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David’s Follicular Lymphoma Story

David’s Follicular Lymphoma Story

David, a stage 4 follicular lymphoma survivor, began his journey with cancer in 2011 when he experienced sharp abdomen pains and persistent sickness while living in Japan. Initially dismissed as the flu, he faced a delayed diagnosis due to the aftermath of a devastating earthquake and tsunami. The loss of his home and business added complexity to his struggle as he sought treatment for his blood cancer.

After enduring grueling chemotherapy and a clinical trial, David faced severe side effects and a slow tumor response. Despite temporary relief, the cancer returned, leading to a stem cell transplant that came with complications. Battling infections, respiratory issues, and a grim prognosis, David emerged from the transplant determined to focus on diet, exercise, and a positive mindset. Now, 9.5 years into remission, he attributes his recovery to disciplined lifestyle choices, offering a beacon of hope to others facing the challenges of stage 4 follicular lymphoma.

David shares his cancer symptoms, treatments, and diagnosis
David shares his cancer story timeline
David shares his cancer story timeline

If you feel like you’ve got a mountain to climb in front of you, don’t look at the mountain. Just focus on the next step.

David K.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Symptoms

Tell us about yourself
David has a YouTube channel and runs a Facebook group about overcoming follicular lymphoma

I am David. I have a YouTube channel trying to help people and some Facebook groups. At the moment, my hobbies are mostly to do with sport, healthy eating, healthy lifestyle and that sort of thing. Grounding and getting outdoors as much as possible. 

What were your initial symptoms?

My story with cancer started back in 2011. I didn’t take a lot of notice at the time. Of course, many of us don’t. We sort of pass different health issues off as just part of life.

I was having very sharp abdomen pains off and on throughout the day, but it wouldn’t last. It would only be for a few seconds at a time. They gradually got worse and worse. I was sick all the time. I had a cold all the time. Like all year I was fighting colds and flu. 

What was happening in your life around this time? 

At the time, we were living in Japan and in March of 2011, we were hit by a 9 magnitude earthquake that lasted over 6 minutes. That resulted in the large tsunami that hit us afterward. We spent a few months without power, water, gas, or anything like that for a while. We’re riding around on bicycles, trying to find places that have some food and water for us to buy. Things did settle down and supplies started coming in so we could get fuel and things like that again. We were trying to rebuild.

I’m a strength and conditioning coach and I was coaching athletes at the time. I was trying to build that business back up and my wife had to go back to work. In between that, we were helping other people trying to clean up after the tsunami. We cleaned out houses that did survive, visited shelters, and tried to bring food, clothing, and things like that to people who didn’t have any. It’s kind of difficult. You’re trying to rebuild yourself as well. 

Japan post-tsunami
Did you see a doctor to address your symptoms?

I was getting sick all the time, as I said. I did see a doctor once and he just said it was a flu. He did an x-ray and didn’t say much about it. He was confused by my blood results, and he said he would check me again early next year.

But in December, I decided to visit my family here in Australia. As soon as I got off the plane again, I was sick with the flu. I decided to go see their local doctor to get something for the flu and just have a general checkup. He decided to do a blood test. That next day he called me back in to have a look at the results. I wasn’t expecting it to be that soon. He was confused by the blood results as well because I was quite fit. I thought I was healthy, I was doing everything right. 

He felt around my abdomen and he didn’t tell me what it was, because he didn’t know. But he said, “Look, I think you should stay here and get this checked out.” I was by myself. My wife was still in Japan working. I had to go home, tell my parents, call my wife, and tell her, “Look, I don’t think I’ll be able to come home in January,” when I was due to go home. “Because I might be a little bit worse off than I thought.”

Diagnosis

Travel plans were delayed due to the doctor’s recommendation

I just thought it was a bit of the flu, and while I was doing that, my doctor organized an ultrasound and x-rays to be done in the town near my parent’s place because they lived in the countryside about a 4-hour drive from the main city, Brisbane. Over the Christmas holidays, not a lot happens, so it took a few days for this to happen. On the 3rd of January, my wife decided to join me. She arrived here in Australia, and that same day, the hospital in the city called me just a couple of hours after she arrived. They called me and asked me to go into that hospital that night. Of course, we didn’t do it that night. We went the next day and they didn’t speculate on any reason why. They just told me that it was rather urgent. 

My parents and my wife all made the trip and we went into the emergency room and we’re thinking, okay, we might be here for a few hours just waiting. But surprisingly, they had me in a bed within about 10 or, 15 minutes and I was surrounded by all these doctors, nurses, council workers, and counselors. People that are getting ready to tell me something is really bad.

Receiving a cancer diagnosis

Eventually, the test came back and they diagnosed me as stage 4 follicular lymphoma. With follicular lymphoma, there’s no chance of a cure. There’s only hope for a remission period.

They said that they didn’t know what type of cancer it was, but they knew that I had a large tumor and that I had a form of blood cancer that they needed to do tests for. It was a bit of a head spin. I wasn’t prepared for anything like that. I knew I wasn’t well because I kept getting the flu and things like that, but I wasn’t expecting that. I wasn’t expecting them to say, “Look, you’ve got cancer.” 

I was only 38, 2 months away from my 39th birthday. The year before was a pretty tough year. Going through running, my usual training, and things like that, I started slowing down a lot. I was thinking I was just getting old, that’s what I put it down to. Then the tests started, and that took a little over a week because there’s quite a numerous amount of tests. We did all sorts of scans, a biopsy of the main tumor, and my kidney function. The kidney function was important because the size of the tumor was that big that it had sort of crushed all the other organs around it. It was wrapped around my aorta is where it originated from.

It killed my left kidney and my right kidney was just down to 12% capacity. The cancer was already pretty much going to kill me. I probably wouldn’t have lasted long enough for the cancer to come there because the kidney was going to fail before then. That was the priority before they could start treatment. I had to have stents put in. They put them in both kidneys to try and get the left one going, but it had shrunk too much to recover. The stent operations were done every 3 months for a couple of years after that. 

»MORE: Reacting to a Cancer Diagnosis

What stage were you? 

Eventually, the test came back and they diagnosed me as stage 4 follicular lymphoma. With follicular lymphoma, there’s no chance of a cure. There’s only hope for a remission period. The more you treat it or the heavier you treat it, usually the shorter the remission period and the more aggressive it comes back. 

Adjusting to life with cancer

I wasn’t too worried about that at the time. I was more concerned about our life in Japan. I’d been there for 10 years. Everything that we had was in Japan, and our whole life was there. Our home, business, car – just everything that you build up over the years career-wise. We lost all that because of the cancer. 

All I wanted them to do was just cut out the tumor, dose me up with some drugs, and then just let me go. That was pretty much how I was thinking about it right up to treatment. I didn’t take on board that I was going to be there all the time, for the rest of my life, or that it might come back. That took some time to get around. I didn’t delve too much into it at the time. I just wanted to take it step by step. 

Before my first treatment, my wife had to go back to Japan. This was a difficult stage for us because this might have been the last time we ever saw each other. They told me my kidney function, because of the way it was, I might have less than 3 months to live. She had to go back to Japan to sort out our lives and get rid of everything that we couldn’t keep, and that would take some time. We didn’t expect to be able to see each other again. That was difficult. 

While she was gone. I then had to try and organize a visa for her to come to Australia because she’s Japanese. I had to try and set up a home, find a place to live, and start again while I was going through treatment. So when I started treatment and went through treatment, I was pretty much homeless. I was living on couches and spare rooms of friends and family that were close enough to the hospital or within an hour’s drive. There was just a lot going on, having to move internationally and then going through treatment and getting the diagnosis. It was a real head spin, just so much going on at once. 

Before beginning treatment, David's wife had to leave the country

This was a difficult stage for us because this might have been the last time we ever saw each other. They told me my kidney function, because of the way it was, I might have less than 3 months to live.

Chemotherapy

What cancer treatment were you on?

The treatment was absolutely brutal. They started me on R-CHOP. The plan was for 6 to 8 treatments, depending on how the cancer reacted and the tumor. The cancer itself did react pretty well, but the tumor? Not so much. From January 27th, we started R-CHOP, which is an extremely heavy dose and it’s a 21-day cycle. Every 21 days we have the treatment.

It’s about 5 bags of treatment in one day. They ran it through over a 4-hour period. The first few treatments, ran it through over an 8-hour treatment because it takes time for you to get used to the treatment. The next day, after treatment, you have to give yourself a white cell injection to try and stimulate white cell production. That was the most painful part. After that, I think that’s when all the bone pain sort of comes in and all the violent vomiting and that sort of stuff. 

We did scans every 2 months. We got to treatment number 6, and they said, “Well, we’re going to have to go all the way out to 8 because the tumor just hadn’t reacted.” It was very slow to react to the treatment. We got to treatment number 8, which emotionally, was very up and down. I had white coat syndrome, and the thought of going back to the hospital after each treatment was just brutal. It was sickening. Certain smells would set you off. Even just body smells from other people, soaps, anything like that would just make me very sick. 

I didn’t want to see [my doctors] at all because I knew how I felt afterward. It made me so sick and violently ill. Just the thought of going back and seeing them, or even speaking to them, just made me sick. 

David shares his experience on R-CHOP chemotherapy

»MORE: Chemotherapy FAQs & Patient Stories

How was your medical care team? 

They were very good. The people were wonderful. My oncologist, I still see him every 6 months. They’re just great people and the nursing staff are lovely. They go through a lot. I think it’s a very thankless sort of job but they are wonderful people. I think it takes a special kind of person to do that job. 

What advice do you have for someone on cancer treatment?

Tell [your doctors] everything that you’re feeling. They may not be able to help with the way you’re feeling, but any kind of side effect that you’re feeling they may be able to either change the treatment or they might give you some painkillers or something that might help with those side effects. 

David shares his advice for someone on cancer treatments

There are numerous amount of side effects of chemotherapy. I had bad IBS and reflux. The bone pain. If you’re going through our trial especially, things like the bone pain are quite intense. Even without movement, just lying on the bed, it felt like the weight of my own body was crushing my bones. Plus, if you do have abnormal sort of reactions, they need to know about it so that they can adjust the treatment. So you should tell them everything.

What did you do to combat mouth sores? 

Depending on the treatment that you go through, some people react differently. I tended not to delve too much into other people’s stories because you do react differently and I just wanted to react to how I was feeling. For example, in the first 2 weeks of the after-treatment, I couldn’t eat. My mouth was full of ulcers and sores. All I could taste was the chemotherapy itself, which was a horrible, horrible taste. It kind of felt like I was sucking on metal. It was a really strong flavor as well. It’s very painful. The mouth is all swollen because of the sores and vomiting a lot. You can’t keep anything down either. 

David suffered from mouth sores, a side effect from chemotherapy

You have to find ways to numb the mouth. Things that worked for me were baking soda and salt, mouthwash helped to clean the sores and to numb the pain. It also helped just to clean the mouth as well, to get rid of the sores. Oddly enough, chewing gum. I don’t recommend eating a lot of sugar or those sorts of things, but it did numb the mouth enough that I could try and eat something. 

Fasting – I didn’t set out to fast at the time, but for the first 2 weeks after, I really couldn’t eat because of the way I was feeling. Again, when you’re vomiting that violently on an empty stomach, it’s infinitely more painful. If you can get something in, even if it’s like liquid food, something to help or to have to bring it up, it helps. It also reduces the acid burn you get from the reflux in your esophagus. It was really good for all the esophageal mucus and that sort of stuff. That was really helpful for me, I think.

»MORE: Managing Nausea and Vomiting from Chemotherapy

Radiation & Immunotherapy

How often were you getting scans during cancer treatment?

I was getting scans every 2 months. They were doing CT scans, PET scans, tests, and all sorts of things. After the eighth round, we did CT scans and the result was the main tumor had only shrunk by just under about 28%. It hadn’t responded as well as they wanted it to, but my blood was clear at the time, so that was good, and my spleen was clear. Most of everything else was okay, but the tumor itself was still only a 28% reduction and still growing. 

Beginning radiation to shrink the tumor

The next day, we did 18 rounds of targeted radiation on the tumor itself and on the main tumor. I say ‘main tumor’ because it lives with lymphoma. The lymph nodes are all malignant as well, and they were all clear by the eighth round. That was good. 

The radiation, I thought, was a cakewalk. That was easy, but I did still take my anti-nausea medication because the one day that I didn’t, I did vomit. You still do get nausea from the radiation. I didn’t have any other side effects really, so there was no pain involved or anything. It’s just a 2 minute done and dusted hit on the tumor. 

After that, we did more CT scans, blood tests, and update tests just to work out where the tumor was up to. The radiation did help a little bit. It reduced it by another 10%, so they were pretty happy with my progress and labeled me as stage 2 and stable. That was pretty good. I was thinking, hopefully, if we can keep it in that stable in that remission, everything would be good and maybe we can go back to Japan and start living again. 

Switching to another cancer treatment 
David switched to rituximab

Then they decided to put me on a rituximab 2-year program. Rituximab is the first part of the R-CHOP treatment. That’s what the “R” is for in R-CHOP. Every 2 months I have a rituximab treatment, and this would be for 2 years. Then this would hopefully give me an extended remission period. I was hoping for maybe 5 or 10 years of remission. And of course, we did scans and tests every, every treatment as well. That was every 2 months. We did that for 14 months. That took me to January of 2014, exactly 2 years to the month. 

Were you able to stay in remission with rituximab?

They rediagnosed me again as very high stage 4, so it had come back even while I was going through the rituximab treatment. The 2 months before we had done scans and tests and I was stable. I was fine. In that 2-month period, it was back to stage 4 and again just everywhere. I was back to square one. That was really disheartening because the 2-years before I said, okay, this will keep me in remission, because I knew it would come back. I just didn’t think it would come back until after these 2-years. 

I thought I was going back to Japan and my wife and I were going to start living again. Even if it was just stage 2 remission and I still had the tumor there, it wouldn’t worry me. But now it’s stage 4 again. So that whole 2-years are just back to square one. It was very difficult emotionally and mentally. 

Clinical Trial

Joining a clinical trial for bendamustine

They got me into a clinical trial here in Brisbane for bendamustine. It’s not a new drug, but it just hadn’t been used in Australia for some time. They decided to use it in a clinical trial. It was supposed to be as effective as the R-CHOP, but not have so many violent side effects. 

For some people, maybe it worked. For me, because it was a clinical trial, I had a clinical nurse who was with me every day, every step of the way. They were checking on me and wanted every detail. I kept a diary for each day on how it was making me feel, so it was very tight. It’s very good that way, but it kind of made me feel like a lab rat too, because they’re sort of experimenting on everything. 

How did you feel about joining a clinical trial?

I was nervous about it because I didn’t want to go through R-CHOP again. I was mainly concerned about how that made me feel. I was concerned about whether or not I wanted to go through more treatment. They assured me that the side effects were not as bad and it wasn’t as violent. 

The fact that it was a clinical trial did make me a little bit nervous as well. I was thinking, has it been used or is it an untested drug? I did find some information on bendamustine itself, and it had been used in other places for some time, which sort of put my mind at ease. It was kind of like that lab rat feeling going into it. 

But again, the staff was so nice. They were nice people. The clinical nurse that I had kept tabs on me all the time, and she’d call and talk to me every day and see how it was going. It wasn’t so much about writing down everything that you’re feeling, all the side effects, and that sort of stuff. She just wanted to make sure that I was feeling okay emotionally about the trial, and that helped.

I think there are a lot of benefits to doing a clinical trial. For example, when you have a clinical nurse there keeping an eye on the treatment, they make sure that everything is done correctly. Everything is done right. This helped because one of the things about treatment number 4, one of the bags that the pharmacy sent to us was out of date by nearly 2 years. She picked up on those sorts of things, so it was it was very handy. It did make the whole thing a lot easier, I think. 

Did you have side effects from bendamustine?

As for the treatment itself, the first one I thought was really easy. I had to drive myself to the hospital. I didn’t have anyone to drive me. My wife can’t drive, so I drove. It was done over 2 days, each treatment. I came home at night between them. During the first treatment, I drove home and immediately I started having non-neutropenic fevers. It skyrocketed, my fevers. I was feeling like I just couldn’t do anything and I was hot, I was red, and I wanted to lie down on the bed and sleep it off. But my wife called an ambulance and took me back to the hospital, which is a good thing because I wouldn’t have made it through the night otherwise. The fevers were too high. 

David was on a clinical trial for bendamustine

They kept me in for 3 days. The following day, they gave me the rest of the treatment. Apart from the fever and the treatment itself, I didn’t have as much bone pain, muscle pain, or anything like that. There was a little bit of nausea and vomiting, but nothing like the R-CHOP. It was very easy and mild compared to that. The second treatment was the same, and again, they kept me in hospital for 3 days. 

After that, we did updated scans. The first 2 treatments worked quite well on the cancer. They were pretty positive about it, so I felt it was all good. I can handle the fevers and stay 3 days in hospital if it’s working. 

My wife called an ambulance and took me back to the hospital, which is a good thing because I wouldn’t have made it through the night otherwise. The fevers were too high.

We got to treatment number 3 again and the fevers were out of control. They kept me in for 3 days. They were still treating me the second day, but this time my treatment arm was starting to fill up with blood clots and they were quite long and very pronounced. There were superficial blood clots in my arm, but they went from my shoulder down to my wrist so they couldn’t keep feeding it through my arm. So they went to my left arm and the next treatment did the same thing to my left arm. By treatment number 4, both my arms were filled with blood clots. 

»MORE: Cancer Treatment Side Effects

Receiving a port

Then they had to put in a port on the right side of my chest. That was the scary part because it had filled up both my arms with blood clots, and now they wanted to feed it directly into my heart. I was a little bit worried because they told me it’s because the heart just gets it out quickly and disperses it, so you should be okay. But I still had these massive, long, very painful blood clots in my arms, so it was very concerning. We did update scans on the fourth treatment. The first 3 treatments had been quite effective, but by treatment number 4, it had stopped working. We went to treatment number 6, we had more update scans and again, it had stopped working. They went out to the full 8 rounds. 

By treatment number 6, they worked out how to keep the fevers down before treatment, but the scans after treatment number 8 showed that the first 3 had worked quite well, but from there, they did nothing. Then they prepared me for the autologous stem cell transplant. Because I couldn’t work through all this, I didn’t have much income. So we were living in a foundation here called the Leukaemia Foundation

Between treatments in the clinical trial, we had to move, so we had to find a place close to the hospital. We found this tiny little studio and we had to move between treatments. There were a good 5 or 6 days after each treatment that was on a 21-day cycle, the same as the chart, but there were about 5 or 6 days where I felt pretty good. Before the next treatment, I almost felt normal again, so that was pretty good. That gave me time where we could organize and move into our little studio. 

Stem Cell Transplant

Opting for a stem cell transplant 
David was told to make a will before undergoing a stem cell transplant

They told me before going into it that I had to make out a will because they really didn’t expect me to come out of it.

After the eighth round, we did more scans. The clinical trial was still going for a couple of months afterward to track my progress. Because it hadn’t done much from the third treatment, they decided to go into the stem cell transplant. I had to get a Hickman line or CV line implanted in my chest on the left side. That had 2 rubber tubes sticking out of my chest there, plugged straight into my heart, and 2 little connectors that just hung out so they could run the different treatments through. There were quite a few different treatments that were going to basically destroy my body and then reintroduce new stem cells. 

They used these different types of chemotherapy over 7 days for 24 hours at a time. That was an absolute nightmare. That was a much worse feeling than the clinical trial. I didn’t want to do it. I even asked my oncologist if it was going to be worth it and how much time would it give me. Do you think I would live if I didn’t do it? But again, the time was down to months. I was only thinking about my wife, so it was a tough decision to make. 

They told me before going into it that I had to make out a will because they didn’t expect me to come out of it. That was really tough. It was consent. Being concerned about what could happen during the transplant, they strongly suggested that I make a will before going into it. The months afterward, my oncologist admitted that he didn’t think I was going to get through it. It was tough, but obviously, we decided that it was at least worth trying. I didn’t think it would be as bad as the R-CHOP, so I figured, well, I got through that. I can get through this.

The difference is that this was numerous amounts of chemotherapy going through. It’s 7 days, 24 hours at a time, but there’s no rest period at all. Then on the eighth day, they would reintroduce my stem cells to try and help me recover. That was the good news, that the year before, after my blood was clear, they collected my stem cells at the end of my R-CHOP treatment before I started radiation. My stem cells were quite high. They were 99.4% viable, so that was one good thing I had going for me. During treatment, I was fasting and I was still – on the days that I could – getting some movement around. I was quite fit before going into it, so I was lucky in that respect. 

Complications during transplant

During the transplant, my Hickman line, the CV, and the plastic tubes for my treatment became infected. They had to decide whether or not to keep going with the transplant or not, or just remove the tubes and keep going. They decided to keep going, but they had to put the treatment through my arms and the port in my chest. So they had to pull out the Hickman line, and that was concerning as well because I still had clots in my arms as well, and they were still feeding it through my arms. 

From there, because of the infection, I don’t know if it was just due to the infection or not, but I stopped breathing numerous times and it got so bad that the nurse would have to come and check on me every 10 minutes or so to check if I was breathing or not. I had bad heart fluctuations, the arrhythmia in my heart, so I would pass out. I’d stop breathing, I’d wake up, I’d have this oxygen mask on, and I’d have ECG electrodes stuck on my chest, trying to measure my heart rate and things like that. They kept those monitors on all night. I was trying to sleep and it was really difficult. Especially because the nurse kept coming in to check if I was breathing or not, so I didn’t get much sleep. That was really difficult. 

They had to quarantine my room, and of course, the only person that came to see me was my wife. She was sitting there watching that all day, and that was difficult for her. Years afterward, she would – if I was sleeping, because I was stuck in bed for years after that – she would wake me up just to make sure I was breathing. It was a bit of a traumatic stress for her as well, I think. 

I went in on the 3rd of September in 2014, a couple of weeks just after the clinical trial, and I came out on the 6th of October. I kind of looked like a raisin. I went in looking like a grape and came out looking like a raisin. I lost about 100 pounds. I couldn’t move. I was in a wheelchair and had a walking aid to get to my studio. I couldn’t move from there for quite some time. 

Did you have follow-up scans post-transplant?

After that, we had updated tests and scans. I had blood tests and I had to see my doctor every week. We did scans every 2 months or so. We did CT scans, and even just the fluid for the CT scans, PET scans, and things like that would make me sick for days. I still couldn’t move. Whenever I was in the hospital, I always was in a wheelchair and then I had a walker. It was like baby steps. I couldn’t move more than half a foot in front of each other. It took me quite a long time to get moving again. 

Reflections 

David has been in remission for 9.5 years

This month, January 2024, is actually 12 years to the month of the original diagnosis. A couple of months to live to 12 years and still going, getting better and better.

The importance of diet and exercise in staying cancer-free

Time heals everything, I guess. Getting the right food helps as well. Throughout the whole period, we never ate takeaway food, junk food, or anything like that. It was all my wife’s cooking and my cooking. Always home prepped, home-cooked meals. That, I think, was the key to surviving Later on, progressing to where I am now, it has been all diet. I’m now 9.5 years in remission. 

This month, January 2024, is 12 years to the month of the original diagnosis. A couple of months to live to 12 years and still going, getting better and better, and it’s all come down to my diet and exercise. It’s been a big help.

»MORE: Learn More About Cancer Remission

Do you have any advice for cancer patients?

Staying positive is a very big thing. It’s very difficult to do in situations like that. We all get in stressful situations in life, but I think a lot of the stress that we feel is internal because of the way we think about the situation. I like to break down every situation into small, easy, achievable steps. If you feel like you’ve got a mountain to climb in front of you, don’t look at the mountain. Just focus on the next step. I think dealing with the situation as it came made it easier for me. 

I didn’t try to look at everyone else’s story too much, although it was nice to get information and helpful tips, but you’re going to react to things differently. Impossible is nothing but motivation. To me, when you get a bad diagnosis, it doesn’t mean that’s the end of everything. They told me many times there were situations where I almost didn’t make it. But if you stick with it, if you believe in yourself, even if everyone around you tells you that it’s going to be like this, that doesn’t mean it’s going to happen. 

Just because it hasn’t been done doesn’t mean you can’t do it. They just haven’t seen it yet. So believe in yourself, believe in God, have faith in yourself, and you will get there. It is frustrating, it takes time, and even if it’s slow going, even one step forward is still getting you one step closer. Don’t try not to fall into the trap of, “Poor me. Here we go.” That’s all I can say – just focus on moving forward. Get the job done and you will get there. I promise you.

Thank you for sharing your story with us, David!
David is a stage 4 follicular cancer survivor

I’m happy to help and I hope my story does help some people who are going through this sort of treatment as well. 

More Follicular Lymphoma Stories

David shares his stage 4 follicular lymphoma diagnosis
David K. Diagnosis: Stage 4 Follicular LymphomaSymptoms: Sharp abdomen pains, frequently sick, less stamina Treatment: Chemo, R-CHOP, rituximab, radiation, bendamustine, stem cell transplant
Headshot of Nicky, who's living with stage 4 follicular lymphoma
Nicky G. Diagnosis: Follicular LymphomaSymptoms: Fatigue, weight loss, lumps in the neck and groin Treatment: Quarterly infusions of rituximab, radioactive iodine 131 infusion, platelet transfusionn
Kim

Kim S., Follicular Lymphoma, Stage 4



1st Symptoms: Stomach pain
Treatment:Chemotherapy (rituximab & bendamustine), rituximab for 2 additional years
Categories
Colorectal Patient Stories Rectal

Jelena’s Stage 3 Rectal Cancer Story

Jelena’s Stage 3 Rectal Cancer Story

Jelena, a mother and avid runner, shares her journey with stage 3 rectal cancer. Initially experiencing changes in her gas, she attributed it to dietary issues. When bleeding occurred, she consulted a nurse practitioner who suggested monitoring the symptoms. After three months, the bleeding intensified, prompting tests and a colonoscopy. Despite being healthy and in her 30s, Jelena received an unexpected diagnosis – rectal cancer.

The following weeks involved diagnostic testing, revealing the cancer’s stage 3 status. Jelena faced decisions on treatment options, considering seeking second opinions from larger cancer centers. Ultimately, she opted to undergo 28 days of radiation and oral chemotherapy followed by surgery to remove the tumor. 

Her journey continued with additional chemotherapy sessions, challenging moments, and a supportive online community. Regular follow-ups and surveillance became part of her life, offering reassurance as she embraced the role of a cancer survivor. Jelena emphasizes the importance of online support groups and encourages others facing similar challenges to connect, share experiences, and find strength in solidarity.

Jelena on her final round of chemo

Social media can get a bad rap a lot of times, but it can be great in situations like this, to connect with others that are in your situation that may not be in your town or even in your country where you live.

Jelena T.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Symptoms

Tell us about yourself

My name is Jelena. I am a mom to a now 12 year old daughter. Some of my activities that I like to do, I love to run. I’ve been running ever since high school. I enjoy sewing. I’ve been sewing figure skating costumes for my daughter, who is a skater. 

Jelena is an avid runner
Jelena has a YouTube channel about her cancer journey

Other hobbies that I have, I’ve got a YouTube channel that I started after my cancer diagnosis called Life As A Cancer Survivor, which keeps me very busy. I enjoy hanging out with my family and spending time with them and traveling when we can. 

What were your first symptoms? 

I didn’t necessarily know anything was super wrong at first when my first symptoms popped up. My first symptom was actually a change in my gas. It smelled different and was more potent than it used to be. I thought maybe it was just something I was eating so I tried taking some probiotics, thinking that would help. Then I started experiencing bleeding when I would go to the bathroom after taking those probiotics, so I stopped. I let the bleeding stop and let the probiotics work their way out of me. 

My first symptom was actually a change in my gas. It smelled different and was more potent than it used to be.

Jelena and her husband
Jelena and her daughter

I tried them again, got the same result, so I thought that I was stuck with stinky farts for the rest of my life. When I went in for my physical a few months later, I mentioned that experience with the nurse practitioner, and she asked if I was still experiencing the bleeding, and I said no. She suspected maybe it was just a change in my diet, although my diet really hadn’t changed, so it could have just been changes in my body as I aged. She did say that if the bleeding started again to call the office and let them know and they’d investigate further. 

»MORE: Colon & Rectal Cancer Symptoms

Running tests and scans to investigate the symptoms 

Three months later, the bleeding did pick up again and I hadn’t been taking the probiotics. I called the office and they brought me in for tests. They ran blood work to check me for all kinds of food allergies, to see if something was just upsetting my digestive system and causing the bleeding. Everything came back negative, so she sent me in for a colonoscopy so they could investigate firsthand what was going on inside. I was 34 at the time back in 2016. 

Tests & Scans

Was it easy to get a colonoscopy? 
Jelena discusses how to get a colonoscopy

If they refuse a colonoscopy, tell them that they need to put in your file that you came to them with symptoms and that they refused to give you a colonoscopy. That may also make them think twice about denying it.

My doctor, I didn’t have to really fight with her about it, but I know many others do have troubles going in. My advice would be to try and keep track of all of those symptoms. Mark in a calendar or some kind of symptom tracker, how many times you’re using the bathroom and how your stool has changed, or when you’re experiencing blood and all of those things. So you’ve got hard evidence to take in to the doctor’s office when you see them. 

If they refuse a colonoscopy, tell them that they need to put in your file that you came to them with symptoms and that they refused to give you a colonoscopy. That may also make them think twice about denying it. They might say, “Well, I don’t want to look bad. Okay, we’ll let you go in for one.” Or if they are still adamant about it, get a second opinion from another doctor. I know that’s not always the easiest thing to do, but if these symptoms are ongoing and aren’t getting better with diet changes or other recommendations from a doctor, then it needs to be checked out.

Did you suspect you had cancer?
Jelena didn't suspect she had cancer

I was not thinking cancer at all. Cancer doesn’t run in my family, especially not colorectal cancer. I was 34, I was healthy, as I mentioned, I was a runner. I had just run a half marathon up and down Pikes Peak, which is a 14,000 foot mountain here in town. I was in some of the best shape of my life. I ate healthy and didn’t ever think that cancer would strike me at such a young age. 

I was going in thinking I had some kind of digestive disorder that was causing this. I might have to be gluten free for the rest of my life, or maybe take some kind of medication to keep things from progressing or to keep the gas and bleeding under control. I did not suspect cancer at all. 

Describe your experience prepping for a colonoscopy 

I actually just went in for my most recent colonoscopy last week, so it’s been a week since my most recent one. But for that first one, they did tell me not to eat fruits and vegetables for the two days leading up to the colonoscopy. No fresh fruit or vegetables. Canned stuff, you can digest easily, you can eat. They want your colon to be nice and clean. A lot of those fibrous things that we eat, they can linger or leave residue behind. That makes it difficult to really see the entire colon wall. 

The day before the procedure, the prep they had me do, I drank magnesium citrate. It’s like a 16 ounce weird tasting sprite, bubbly beverage. I drank that. I took some stool softeners, and then I mixed up the Miralax and Gatorade and had two different doses of that to clean me out. 

Jelena in Belize post-cancer

Diagnosis

She said that they found a mass in my rectum when they were doing the colonoscopy…she was 99% sure that it was cancer.

Grappling with possibly having cancer while awaiting results

I had the procedure the next morning and went in. It was late in the morning. It was at 11:30 because my daughter was in preschool at the time. My husband had to drop me off at the colonoscopy, go pick her up from preschool, and bring her back to pick me up. When I was waking up from the procedure, he was in the room, but my daughter was not. I was like, “Where’s Maelle?” They said, “The nurse wanted her out while they come in and talk to you.” That was when my stomach dropped and I suspected that there was bad news coming if they didn’t want my daughter in there. She said that they found a mass in my rectum when they were doing the colonoscopy. They took biopsies of it to see what exactly it was, but she was 99% sure that it was cancer. 

She said they put a rush on the biopsy so they would get the results as soon as possible, but she didn’t discuss anything further. She said we’d talk more once those results came in, which only took two days. The colonoscopy was on a Monday, and by Wednesday afternoon we were in her office to get the results. It was heart wrenching finding out that I could have cancer, that it was bad enough that they couldn’t just scoop it out during the colonoscopy. I knew it wasn’t just stage 1 or 2. It was probably more advanced, but had no idea how advanced it was. 

My daughter was finishing preschool. We were in the process of building a house in a nearby neighborhood, but I had no idea if I was going to live to see that house completed. I was like, do we even continue with this or just pull out? Because I’m not going to be here. We’re not going to need this house. 

Jelena's unfinished home

You try your hardest to not let your mind go to the worst case scenario, but it’s really difficult when you hear the word cancer, and you have no idea how bad it is to not let your mind wander there occasionally. So then it’s just planning. Okay, well, what happens if it is this or if it is that? You’re trying to not let that get too out of control because you can spiral quickly and think the worst when it may not necessarily be the worst case scenario. 

»MORE: Reacting to a Cancer Diagnosis

Receiving a cancer diagnosis 

As I mentioned, two days later, we were getting the results at the doctor’s office and she confirmed. When she was walking us back, she seemed cheery and upbeat so I thought, oh well, maybe it’s not cancer or it’s not bad. Then she sat us down and she said it was cancer. My husband was there with me and we cried. The doctor held my hand and cried with us, and she said, we don’t know how bad it is, but the next week or so is going to be full of diagnostic testing to find out the staging of the cancer so that we can begin treatment. 

Jelena grappled with the idea of having cancer

It was heart wrenching finding out that I could have cancer.

Receiving further tests and diagnostics 

She referred me to multiple offices to get the CT scan. She referred me to an oncologist, which I’m glad because I had no idea who I would go and see for this. Her office took care of getting in touch with all of those offices, and they reached out to me to get everything scheduled. The next couple of days was just a flood of getting phone calls, scheduling appointments, figuring out preps for this because some of them, you can’t eat for a few hours before or you need to do this, you need to do that.

Jelena's doctor referred her to get further tests
Jelena received a CT scan, MRI and ultrasound to get an accurate diagnosis
She was diagnosed with stage 3 rectal cancer

Over the next week, I did an a CT scan, I had an MRI, I had a rectal ultrasound so that they could see if lymph nodes were involved because it was difficult to see in the CT scan whether or not multiple lymph nodes were involved. In the CT scan, a lymph node lit up in my chest and they weren’t sure if it was cancer or not. They said typically if it had spread up into the chest, there would be a trail leading from the cancer up to there. To be sure, they sent me in for a PET scan, so there was another scan that I had to do. 

Treatment

Considering traveling to receive the best medical care
Jelena discusses her first appointment with her oncologist

Meeting with the oncologist, we hadn’t gotten the PET scan results yet but we had gotten CT scan and ultrasound results, so they knew it was at least stage 3 when I met with him. He explained what the standard of care was, what order treatment was going to go in, and what the next steps would be. Then from there, we went home, and researched is what he’s saying in line with what other people have done with what the standard of care is. Do we need to get second or third opinions? 

We’re in Colorado Springs, so it’s a decent sized city, but we don’t have a huge medical center here. I have family in other states near big cancer centers. If this isn’t where I can get the best treatment and other places could, I want to know if I should be going out to Washington, to Ohio, or to North Carolina to seek options that may not be available to me here. After doing our research, everything that we saw lined up with what the oncologist was telling us. 

Jelena with her chemo port in

I was comfortable with getting treatment here when we met with the radiation oncologist as well. I asked him if he thought we should seek out other opinions. He said, “I would put my ego aside if I thought you could get better treatment elsewhere. I would totally recommend you other places, but I feel like with your situation, you can get perfectly great treatment and we can handle your situation here.” That comforted me as well that we were making the right decision to stay in town for treatment. 

What cancer treatments were you on?
First round of Xeloda chemo

I started out with 28 days of radiation and the oral chemotherapy Xeloda. For radiation, I went in 5 days a week Monday through Friday. On those days I took the chemotherapy pills. Saturday and Sunday were break days so I didn’t take anything on those days. I had 5 and a half weeks of that. The 4th of July and my sister’s wedding happened right in the middle of treatment so I had a couple of days off in the middle there. He cleared me to go fly to my sister’s wedding while I was going through treatment. Then I came back home and finished it up. 

Jelena took time off of cancer treatment to be at her sister's wedding

I rested for 2 months, which is what my surgeon wanted to give the radiation a chance to do its job as much as possible, because the tumor continues to shrink even after you’re done with radiation. My tumor was located low enough in the rectum that when we started treatment, if it didn’t shrink at all during radiation, then I most likely would have had a permanent colostomy when I had surgery. But the tumor shrank and it shrank in the correct direction, so my surgeon was able to remove the tumor and leave enough rectum so that I just needed a temporary ileostomy while the resected site had a chance to heal. 

They took out about 12 inches of where the colon and rectum joined together, and they took out 17 lymph nodes during that surgery. Five of them were still positive for cancer. That meant I would do 8 rounds of the IV chemotherapy FOLFOX. I waited about 6 weeks after my surgery. I had the opportunity to heal and get strong again. They put in a port about 2 weeks before I started my first round of chemotherapy then every 2 weeks I would go in for FOLFOX. I finished that at the end of March in 2017 and rested a couple of months. 

I really wanted to run a race at the end of May with some friends that we had done multiple years, and so my reversal surgery would have landed, if he waited 6 weeks, it would have been 2 weeks before that race. I would not have been able to have run it. I was like, can I wait a little bit? So I waited a week after. It was really 2 months after my final round of chemo when I had my ileostomy reversed. 

Running a race prior to ileostomy surgery
What is an ileostomy? 

The ileostomy is where they take a portion of your small intestine and route it out your abdominal wall. For mine, it was a loop ileostomy. If this was the abdominal wall and my little knuckle here is my small intestine, they just pull a little bit of it out. Then they cut a slit in it and peel it back so it’s still connected. It’s not fully severed and your waste goes out into a bag that you wear over it.

Jelena had an ileostomy
She discusses the pros and cons of an ostomy

There’s different types of bags. There’s ones that you can change the whole thing or change part of it. The ileostomy, the output is a little more liquidy than usual because it’s your small intestine, so it hasn’t had time for the large intestine to take out some of that liquid. 

»MORE: Navigating Life with an Ostomy

It was a little trickier for me doing changes of the bag because the output wasn’t as predictable as if you have a colostomy. It looks more like what you would normally pass when you go to the bathroom and it’s about that frequent a lot of times. Versus the ileostomy, you don’t have control. You don’t feel anything coming out. Sometimes you can hear it, but it was more difficult to change the bag because of that output constantly happening. 

Reflections

What advice do you have for someone with an ostomy? 

I would just make sure you have all the supplies, have things ready to clean yourself up, clean up any messes afterwards, and again, reach out to others for help. Also, on YouTube there’s quite a few people that have ostomies that have explained what works for them for bag changes and if things get irritated, what they do. So don’t ever feel like you’re alone. Look around. The internet is a great place for finding help through all of these things. So many other people have been through this, you just have to find them.

Are you receiving follow-up scans and tests?

It’s been maintenance and surveillance. I went in, at first, every 3 months for CT scans and checking my CEA and my bloodwork to make sure all my blood counts were bouncing back. Eventually, it got strung out to every 6 months, every year, and now I am just going in once a year for follow-up blood work and to check in with my oncologist.

The colonoscopy I did one follow-up one year after my surgery. I went in after 3 years, another 3 years, and after this past one that I went in this past week, everything looked good. There were no polyps, nothing suspicious. Now I get to wait 5 years until my next colonoscopy. I will be of a normal age of getting a colonoscopy for my fifth one.

Jelena is on maintenance treatment and surveillance
Jelena follows-up with her doctor
Jelena is now NED
The importance of finding a cancer community

I think one of the things that really helped me along the way, because I didn’t have any family members that had any history of cancer, so I didn’t have anyone nearby that I could reach out to. I looked online on social media. Social media can get a bad rap a lot of times, but it can be great in situations like this, to connect with others that are in your situation that may not be in your town or even in your country where you live. 

I connected with so many others that had either finished treatment or were going through treatment at the same time as myself to just have that support group and know I wasn’t the only young woman that was going through this. There were other women across the country, in Canada, elsewhere, that were going through that same thing.

Hike after finishing chemo

Social media can get a bad rap a lot of times, but it can be great in situations like this, to connect with others that are in your situation that may not be in your town or even in your country where you live.

We could vent to each other when we were really tired or ask, “Hey, is this bothering your system?” Or, “Oh my gosh, is your ileostomy going crazy too? What can you do to slow this down? What do you drink when you’re going through FOLFOX and you’ve got that cold sensitivity and everything has to be hot? I can only drink so much hot tea before I’m tired of it. Like, what else are you drinking?” Those are some of the things you don’t necessarily bother your oncologist about, but having a friend there to support you through can help bounce ideas off of you and help you feel like you’ve got a support group that’s there for you and that you can reach out to if you’re having a bad day. 

»MORE: Read More About Cancer Support

More Colorectal Cancer Stories

 

Shannon M., Colon Cancer, Stage 1




Cancer Details:
Found the cancer as a result of her Lynch Syndrome
1st Symptoms: Routine colonoscopy found polyp
Treatment: Partial colectomy

Hugo T., Colon Cancer, Stage 1



Cancer Details: Diagnosed 2 weeks after 5 years remission from testicular cancer
1st Symptoms: Inflamed bowel
Treatment: Subtotal colectomy, immunotherapy

Rachel B., Sigmoid Colon Cancer, Stage 1



Cancer Details: The sigmoid colon (or pelvic colon) is the part of the large intestine that is closest to the rectum
1st Symptoms: Stomach discomfort, nausea, bloating, blood in stool
Treatment: Colectomy

Chris T., Colon Cancer, Stage 2



Cancer Details: Discovered Lynch Syndrome after genetic testing
1st Symptoms: Found the cancer as a result of family history, early colonoscopy
Treatment: Partial colectomy

Shannon C., Colon Cancer, Stage 2A



Cancer Details: Diagnosed at 29, tested positive for Lynch Syndrome
1st Symptoms: Severe pains after eating
Treatment: Partial colectomy
Barbara smiling

Barbara M., Colon Cancer, Stage 3



Cancer Details: Family history wasn’t flagged, should have had colonoscopy earlier
1st Symptoms: Stomach discomfort, difficult to process food
Treatment: Colectomy, Chemo (FOLFOX, CAPOX)

Shelley B., Colon Cancer, Stage 3B



Cancer Details: Had no usual first symptoms, found as a result of routine colonoscopy and endoscopy
1st Symptoms: None
Treatment:Partial colectomy, chemotherapy (FOLFOX)
Lindsay

Lindsay D., Colon Cancer, Stage 4



Cancer Details: Diagnosed at 32, cancer spread to ovary and lung
1st Symptoms: Lump in pelvic area, funny-smelling food, weight loss
Treatment: Chemotherapy, colectomy (surgery)
Lee

Lee J., Colon Cancer, Stage 4, Recurrence



Cancer Details: Recurrence then remission
1st Symptoms: Discovered stage 4 cancer from unrelated CT scan
Treatment: Neoadjuvant chemo (FOLFOX), hemicolectomy (partial colon surgery), adjuvant chemo (FOLFOX), chemo post-recurrence (FOLFIRI), liver surgery

JJ S., Colorectal Cancer, Stage 4



Age at Diagnosis: 27l



1st Symptoms: Abdominal pain, blood in stool



Treatment: Surgery to remove tumor, chemotherapy, clinical trial of Keytruda (pembrolizumab)
Haley P. feature profile

Haley P., Colon Cancer, Stage 3C



Symptoms: Constipation, fatigue, shortness of breath
Treatment: Surgery, chemotherapy
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Amanda G., Colon Cancer, Stage 2A



Symptoms: Gurgly stomach, blood in stool, chronic constipation
Treatment: Surgery (hemicolectomy), chemotherapy (CAPOX), Zarxio
Jason Randall describes his colon cancer journey
Jason R., Colorectal Cancer, Stage 4 Diagnosis: Colorectal Cancer Symptoms: Abdominal pain, constipation, belly button discharge Treatment: Liver surgery, chemotherapy, radiation
Angelica A., Bowel Cancer, Stage 3

Symptoms: Fatigue, anemia, irregular bowel movements, loss of appetite, heavy periods Treatment: Laparoscopy, chemotherapy, partial hysterectomy
Danielle shares her stage 4 metastatic colon cancer
Danielle A., Colorectal Cancer, Metastatic Stage 3 Diagnosis: Stage 3 Colorectal Cancer Symptoms: Abdominal pain, constipationTreatment: Surgery, Chemo
Keith shares his stage 4 colorectal cancer story
Keith H., Colorectal Cancer, Stage 4 Diagnosis: Stage 4 Colorectal Cancer Symptoms: Abdominal painTreatment: Surgery, Chemo
Sherrie shares her stage 4 metastatic breast cancer story
Sherri O., Metastatic Breast Cancer & Colon Cancer Diagnosis: Colon & Metastatic Breast Cancer Symptoms: Shortness of breath, lump under armpit, not feeling herself Treatment: Chemotherapy, Transfusions
Dania M.

Dania M., Colon Cancer, Stage 4, with Liver and Peritoneal Carcinomatosis



Symptoms: Constipation, diarrhea, terrible bloating, swollen belly, as if pregnant
Treatment: Surgery, immunotherapy (KEYTRUDA)
Stephanie K.

Stephanie K., Colon Cancer, Stage 3



Symptoms: Very bad cramps, bloating, indigestion, burping
Treatment: Surgery, chemotherapy (CAPOX)
Jason A. feature profile

Jason A., Colon Cancer, Stage 3B



Symptoms: Abdominal pressure, fatigue, small amounts of blood in stool
Treatment: Surgery (colon resection), chemotherapy (FOLFOX: folinic acid, fluorouracil, and oxaliplatin)
Kelly shares her cancer story
Kelly B. Diagnosis: Stage 3 Colon CancerSymptoms: Blood in stool, cramping, bloating Treatment: Chemo, surgery
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Courtney H. Diagnosis: Stage 1 Colorectal CancerSymptoms: Blood in stool, fatigue Treatment: Chemo, oxaliplatin, capecitabine, surgery
Zykeisha shares her stage 4 colon cancer story
Zykeisha L. Diagnosis: Stage 4 Colon CancerSymptoms: Anemia, stool changes, blood in urine, back painTreatment: Chemo, Avastin, FOLFOX, FOLFIRI, surgery, Neupogen shots
Kyle R.M. Diagnosis: Stage 4 Colon Cancer Symptoms: Constipation, blood in stoolTreatment: Chemo, FOLFOX
Categories
Chemotherapy Colorectal CRC Patient Stories Radiation Therapy Treatments

Jason’s Stage 4 Metastatic Colorectal Cancer Story

Jason’s Stage 4 Metastatic Colorectal Cancer Story

Jason, a motorsports photojournalist and business owner who rescues cats with his wife, led a busy life. His career often involved working long hours, being away from home for extended periods, and physical challenges. When new symptoms arose such as blood in his stool and gastrointestinal issues, he put them aside and explained them away. Until the bleeding worsened. 

He visited the doctor to address his symptoms and his doctor discovered elevated liver levels following blood work. Further tests and biopsies revealed a stage 4 colorectal cancer diagnosis with metastasis to the liver. 

Motivated by the many positive aspects of his life, Jason refrains from talking negatively about his cancer. He discusses how he ignored initial symptoms and his encouragement for people to get checked when new symptoms arise. Jason describes the process of his cancer diagnosis, including the challenges of undergoing chemotherapy and the emotional toll it takes. He also discusses his unique perspective gained from surviving a heart attack years earlier and his tips for undergoing a colonoscopy with ease. Despite his diagnosis, he remains grateful for the fulfilling aspects of his life.

Jason shares his colorectal cancer timeline

I really try very hard to not complain about my cancer, because all the other stuff in my life is so awesome.

Jason R.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Lifestyle

Tell us about yourself

My name is Jason. I’m 49 years old and going to be 50 years old in 10 days. I am a stage 4 colorectal cancer patient with metastasis to my liver which was considered innumerable upon my diagnosis. There were so many that they couldn’t count. The last time I was scanned, there were so few that they couldn’t really find them. 

I’m married. We have 5 cats. We also are active in cat rescue. We just delivered 3 cats that we had been raising as fosters. One of them already went home. Two of them are still looking for families. Those 3, I think, make 40 in the last 3.5 years through our house. More than 2 of those years we’ve been dealing with my diagnosis at the same time. 

Jason and his wife rescue cats

My wife is an amazing, incredible, unbelievable person. I don’t know where she finds the time, the strength, the energy to deal with my craziness. She teaches a foreign language in a middle school – that’s her job. She’s teaching 12 year olds how to speak French, and she raises all these babies. I just look good. I pose with them and I take cute pictures and they look nice with my big beard and people love that. 

My wife does all the work. She gets up at 6 in the morning to feed them. She’s down there giving them medication. She gives them shots sometimes when they need it. She does all this amazing stuff and it just makes me look good. That’s the short story of us. I enjoy doing that a lot. Helping out, even just sitting down there and socializing with them, because that’s what I’m doing. I’ll go down with my laptop and sit that on my lap. They come up, they sleep on me, I pet them, and just get them used to people. Used to people’s noises and big, boomy voices like mine and things they’re going to experience. 

One of the kittens, the one that got adopted the other day that just left here, went to a home with 2 dogs. She’d never seen a dog before. We already have a video of her laying on the couch, grooming the dog. Or the dog was grooming her – one or the other. For her to be that comfortable that quickly, she’s only 4 months old, we attribute that to us taking a lot of time to socialize with them, but it’s mostly my wife. I, as you might imagine, dealing with all of this stuff, takes up a fair amount of time.

What do you do for work? 

Work-wise, I have a very interesting job. At least to me. I own my own company. I’m a motor sports photojournalist. These days, that encompasses many things from managing social media to working with outside partners. I work for a racing series that puts on motorsports events around the country. I’m basically the staff photographer, social media-writer guy, and I do all of those things. I go to these events that are in North Carolina, Virginia, Maryland, Michigan, Ohio. There’s 9 events through the course of the year. We go to two tracks twice. 

I travel to these events where I work 16 hour days taking racing photographs of some of the fastest cars on the planet. They go from 0 to 200+ miles an hour in an eighth mile in 3.6 seconds. I have to take a picture of that while I have cancer and not die. It’s 16 hour days, it’ll be 3 or 4 of those in a row. It’s not just one. 20,000 steps, 25,000 steps, being on the side of the track, the track temperature is 140 degrees and I’m standing next to it. That’s my life. 

When I think about my cancer and I think about the things I get to do – rescue all these cats, do all this crazy work stuff – my life is like somebody else’s bucket list. We have a separate room in our house. We use the laundry room for the cats because it’s a tile floor. We don’t use it for anything else other than to do laundry. So we have a whole room of our house we could dedicate to that. 

I have cancer and it sucks, but what do I have to complain about? I get to do all this other cool stuff.

Jason is a motor sport photojournalist

We don’t have any children so it’s okay if I say to my wife, “I’ll see you in a week.” I jump in my car and I drive to a race that’s 7 states and 700 miles away, and I go shoot photos of my friends is really what I’m doing. Basically, I get paid to work with my friends and take pictures of them and help promote them in their racing programs and all the other things that’s involved in our little tiny corner of the world. That’s the very short story. This 2024 will be 23 years of doing what I do. I’m very lucky. There’s not a lot of people in the world who get to do it. There’s a much smaller subset of people who actually make a living doing it, where I do. 

The racing series that I work with, I would consider like triple-A baseball. You have the major racing series, which is called the NHRA. Many of our racers will graduate and go race there. That’s my life. Yeah, I have cancer and it sucks, but what do I have to complain about? I get to do all this other cool stuff. That’s the very short, condensed story of why I fight so hard to stay alive. I get to jump in my car an go take pictures. Then I come home and I edit pictures and people pay me money for that, and I’m really good at it. Don’t get me wrong, you don’t get to where I’m at without being talented enough to get there. 

What keeps you motivated? 

I really try very hard to not complain about my cancer, because all the other stuff in my life is so awesome. Starting with my wonderful wife who makes it possible not only by holding down the house while she raises the animals and teaches the children and takes care of our own cats. She also carries the health insurance. Thank you, honey very much for that. And for sticking it out when work is hard, because you’re making it possible for me to be able to be here and do all this stuff.

So grateful. So thankful for all of those things that I [go] forward and I continue to live. Eventually, something’s going to take me. It might be my cancer, it might be something else. I don’t know, but I have all this other great stuff to live for, so I keep doing that.

Symptoms

What were your initial symptoms?

I probably ignored the real symptoms for a long time and explained those away by my poor diet because I didn’t have a great diet. My diet was okay, but I tend to, when I crave something, I’ll overeat that thing. If I want, let’s say, hard mini pretzels, I’ll buy a pound bag and eat half of that. I would explain away all of this gastrointestinal distress to my eating habits. If we’re getting wings, I’m going to order 25 for myself. One human does not need to eat 25 wings. 12 is probably enough. These days, I’ll eat 6 and I call that good. 

Jason ignored his symptoms

I explained away a lot of the looseness. I never really looked at it, I just knew it didn’t really feel good coming out. I don’t know the last time I had a normal bowel movement until after I had radiation treatment and it helped me. They’re still not normal, but they’re so much more normal than what they were before my diagnosis and I started any treatment. I struggled with my gut for a very long time. I thought it was IBS. I’m busy. With my job, I’m gone 9 or 10 weeks, probably a third of the year most of the time. There have been years where it’s been closer to half the year I’m not here because I’m off running around the country playing race car. 

»MORE: Colon & Rectal Cancer Symptoms

I would see, every so often, a little tiny bit of blood. Well, I had a hemorrhoid too. Because I had high cholesterol, do I remember to mention the blood that I saw 6 months ago to the doctor when I’m here for my yearly cholesterol check? Maybe not. I know I mentioned it to him at least once, and he said, “You probably just have a hemorrhoid, keep an eye on it and let me know.” Well, here we are. I don’t blame him. It’s not his fault. It’s my body. He can’t possibly know the other things I’m dealing with. 

Overlooking symptoms 

My issue is more that I didn’t put them together. Like, hey, this happens when you poop. When you eat this thing, this happens. Maybe you should go to the doctor and say, “I’m having some GI trouble.” My career at the time was so busy and so demanding. As a writer, 40 hours usually doesn’t really cut it.

When you’re trying to make a living as a writer, it’s closer to 80. It could be closer to 100 some weeks. It’s not about the amount of time you put into the product that you’re delivering. I have incredibly high standards, ridiculously high standards. I would not turn something into someone else that I would not put my name on. My name is on everything that I do, my photos and my writing. I’m not going to put my name on junk. That requires an incredibly intense commitment and a singular focus. That focus destroyed relationships. Probably contributed to a heart attack I had 12 years ago. 

I’m as type A as they come. When you think of a driven type A person, I’m the one in the driver’s seat driving the bus of the type A people. That’s how insane things are in my head. I just shoved it. It’s not a thing. I eat a lot of popcorn, it tore me up inside, that’s why I saw blood. I would just rationalize and rationalize because I felt okay. It wasn’t like I felt bad. If I had diarrhea from poor eating, I knew that that’s what it was from. Most of the time I didn’t feel poorly. It was just I had this GI crap going on and I didn’t put it all together until I was pretty close to being diagnosed.

Jason started working for himself around his symptoms worsened
How often did you notice blood in your stool?

In the beginning, it would be once every 6 or 9 months. I would see it for a day or two and then it would go away. That very well could have been hemorrhoids. That’s why I’m not sure of when I actually started seeing what you would call symptoms or a doctor would call symptoms. I just know most of my life, I explained away all the GI crap that I had going on from a little bit of blood to having diarrhea 3 days in a row to, I eat terribly. Or I had too many wings or I drank too much lemonade, and all the sugar is tearing me up. 

»MORE: Is Frequent Diarrhea a Sign of Cancer?

When you don’t feel bad, it’s easy to rationalize all of that away, so I did. I finally became ill enough to where I was like, alright, I’m going to have to do something. My wife and I were on vacation in August of 2021. We typically go on vacation for our anniversary every year. Last year and this year we couldn’t because my racing schedule is on top of it. But that year, 2021 was the middle of COVID. I avoided some stuff because of Covid. You don’t want to go to the doctor. You’re not sure if you could go out. I didn’t go to the doctor. I probably should have gone 6 or 9 months earlier, and maybe I overlooked some symptoms and stuff because all that was going on. 

Symptoms worsened 

Finally, we’re on vacation and I started passing blood, and it wasn’t just a little bit on the paper. I’m seeing it in the bowl. In the beginning, when I would see those little spots, it was mostly on the paper. I would wipe, I’d see some and [I’d think] I’m wiping too hard. August 2021. [I started thinking] oh, that doesn’t look good. And man, I’ve been feeling really crappy lately. That was kind of how it started for me. I was feeling really run down. 

However, also in 2021, I started my own company. February 2021, I started my own business and I’m running like the devil all summer long. I’m taking on every job I could find trying to survive. Even though I have many years in my industry, I’ve always worked for someone. This is really my first time where I went on my own and said, I’m going to work for him and him and him and him and him. That whole year, I was running like the devil. Then I’m feeling run down. Now I’m passing some blood. I should probably go to the doctor. Maybe something’s going on. 

Jason's symptoms worsened on vacation with his wife

I don’t remember if I told my wife about the blood. I think I just told her I was having a lot of GI distress because I was kind of embarrassed. It’s not really the kind of thing that fosters intimacy when you’re on vacation with your wife in a nice place. I tried to hide that, and I feel horrible. It didn’t make any difference to my ultimate diagnosis. It wouldn’t have mattered had I said to her, “Hey, I have blood in my stool” in August, versus when I finally got to the doctor in October. So I suffered from August into October. 

The blood and stuff started progressing to the point where I was having tenesmus. Tenesmus is basically uncontrollable cramping of your butthole. It happens to radiation patients right after you have radiation, because the muscles are angry at you for doing what you do down there with the radiation. Well, I had all of that before I ever had a diagnosis. I had this problem with this cramping because of how torn up everything was. I suffered with that for a month and a half before I finally got to the doctor for the first checkup. 

I covered 3 or 4 races in that span. I had all these commitments. I had committed to do things for people where they’re paying me, and that’s what’s paying my mortgage. I got to do what I got to do. 

Describe your doctor appointment

I finally got to the doctor the first week of October. He did blood work. Today, I know I recognize my liver values were to the moon. I didn’t really understand what he was talking about at the time. He just said, “I see some stuff I don’t like. I’m not sure if your cholesterol medication is causing it. Come back in 2 weeks.” I didn’t really get too deep into all the blood stuff with him at that point, because it came and went. I would have 4 days where it was horrific, and then I would have 3 days where it was okay and I was all right. I go back for the second amount of blood work 2 weeks later. 

A friend had colorectal cancer around this time 

Now I’m going to bring someone else into this very quickly. I had a friend, Clarence. Clarence is a fellow photographer. Toward the end of this season, we had commiserated about how terrible we were both feeling. He was about 10 years older than me. To make that very short, during the time period I’m talking about, everything happened from a CT scan to a biopsy to a colonoscopy to an ultimate diagnosis.

All of those things occurred for me between October 14th and December 5th. Let’s include the port also in this time span. I got all those things, ended up with a diagnosis, had a port installed. I’m sitting in the chair on December 5th which is the day that Clarence passed away from colorectal cancer. Like I said,, my story is bananas. I haven’t even gotten into the two HAI pumps yet. I’m now sitting in the chair for the first time. I have watched Clarence basically pass away through Facebook Messenger from all of my friends who are talking with him and talking with his sister. 

Jason with his colleagues

Today, I sit on the board of a nonprofit that his sister runs in his memory. Clarence is a very big part of my story because we were photographers together. When I went to the racetrack where he was the staff photographer, I parked in his spot so nobody else could park there. When I get into the media room, I’m the first one in there because I’m the one who works for the racing series. Clarence and I typically have about a 30 minute conversation in my head before I ever start working, because we talk about how lucky we are to be here again.

Diagnosis

Beginning chemo

I liken the beginning of the cancer experience to being forced to learn a new language without a teacher in whatever your quick time span is. I was diagnosed, I had an official diagnosis on November 23rd. First chemo treatment on December 5th. 

When you go in for your first chemo treatment and they talk to you about all the drugs and stuff they’re getting ready to try to kill you with, you realize that every piece of paper you’re signing could potentially be signing your life away. Everything they’re going to pump into you can kill you every time they do it. Not one time, not the first time, not the third time. You have to build up to dying from it. Every time you get an infusion, you could literally have a heart attack and be dead. You have to sign consent for all of that stuff. It’s like learning a new language. 

You have all these new drugs you’re taking. You have all these diseases…Adenocarcinoma. I get carcinoma. I understand that from high school biology. Oh, well that’s what I have.

What did your doctor say after he received your blood work results?
Jason had elevated liver levels

I recall reading in that report that it said suspected malignancy or suspected metastatic disease.

Once my doctor got back the second round of blood work, he knew there was something wrong. I think he didn’t know what to say to me. He’s located almost an hour from where I live. He’s the doctor I’ve been going to since I was 15 years old. What he said to me was, “I still don’t like what I see. I think we need to do a CT scan to see if there’s anything going on inside.” At this point, I have no frame of reference for what that means. I’m thinking it’s like an x-ray. He didn’t say to me, “Liver values like what you have typically mean…” He didn’t do any of that. 

Maybe he’s trying to be gentle. Maybe he didn’t want to say before he knew for sure. I’m pretty sure he had an idea. He found a hospital close to me where I could go get the CT. I go and get the CT scan. I’m not proud of what I’m going to say, but I have to say it because this is my story and I have to be honest about how everything went down. 

If I remember right, I got the results, maybe in my email from my chart, and I don’t remember sharing them with my wife. If I remember correctly, and some of this stuff is fuzzy, I don’t remember telling my wife, but I think I recall reading in that report that it said suspected malignancy or suspected metastatic disease. I think that was the phrase that I saw. I’m not a stupid guy. I know what metastatic means. I know what disease means. I think that was when I started spiraling. Everybody does it. I know now that everybody does it, and nobody’s immune. You do what I call turtling up. You dive into your shell and you find the thing that keeps you going day to day while you figure out what the heck is going on. 

That’s when I started to spiral, because at the same time, my symptoms were back. The tenesmus was very bad during this period. I was spending 4 hours a day sitting on the toilet just bleeding, not really going to the bathroom, just bleeding. It was horrible. After the CT scan, I read that. Now all of a sudden, instead of me begging for appointments, they’re calling me. “We’re going to schedule you in for a biopsy after the CT scan,” but nobody really told me what they were looking for. At least I don’t remember that. They may have said something to my wife. Ultimately they did a biopsy of my liver next because I guess whatever they saw in the CT, they were like, well, his liver is effed.

What were the results of your further tests?  

Knowing what I know now, seeing my original scan photos and understanding what I’m looking at today compared to before [the] diagnosis, they probably took one look at my liver and said, “This guy is fucked. There’s not going to be anything we can do for him. Let’s do a colonoscopy and confirm it but it’s what it is.” That’s what I think the doctors are probably thinking, but nobody’s saying that to us. 

Jason's doctor didn't communicate much about his test results

We do the biopsy. Again, I got the results and at that point, I didn’t know how to link [my wife] in so she could see my MyChart stuff. I’m getting the results and I’m just like, I don’t know how to read this. We should wait for the doctor. Then the phone call came from the doctor on the 23rd, “Sorry to tell you. This is where we’re at.” If I remember correctly, the doctor who told me that on the phone was the guy who read the biopsy report. I had never spoken to him before. He had never consulted on my case. I think he was just the attending doctor at that time.

After the biopsy, they right away scheduled the colonoscopy 4 days later. I go for a colonoscopy. That doctor wakes me up and says, “I can confirm that you have cancer. This is where it’s from. It’s in your rectum. We’re going to do everything we can for you.” Obviously that’s devastating to anybody. 

Finding strength to keep going

Seeing how people react today, knowing what I have been through, I see why many people refuse [chemo]. Maybe they’ve had a family member who’s been impacted and they’ve watched some of the crap that I’ve gone through, which is insane. I don’t know. I just know for me, like I said, I have all that awesome shit going on and I’m not done. I didn’t work this hard to get to the pinnacle of my career to give up because of this. 

I’ve slept in my car to cover races before, driven overnight all night after working all day, being up 24 hours and sleeping for 3 hours in my car outside the gates before they open. I lived in somebody’s motorhome for 6 months, working. I will sacrifice whatever it takes to continue to be here and if that means surgeries, it’s what it means. 

I have a different perspective, and I’ve had a lot of this since the beginning because of my heart attack. I already had this massive traumatic event that should have killed me because I laid on my bathroom floor for hours having a heart attack before I realized what was happening and managed to get up and get to the hospital. I’ve already had 12 bonus years whereas, when I was first diagnosed, it was 10 bonus years. Since my heart attack, I’ve always lived as if tomorrow could be it because it could be it. I had a much closer view of that than most of my friends did. I’ve lived the last 12 years of my life in a very different fashion than in the beginning. I have so much to live for. It’s going to have to go insane and crazy in my body and take me down, because so far it’s been trying really hard and it has not done that.

Jason had a heart attack years prior to his diagnosis

I’m not done. I didn’t work this hard to get to the pinnacle of my career to give up because of this.

Researching and understanding your cancer diagnosis 

My initial diagnosis came from Dr. Z. He’s a couple years younger than me. Very personable guy. Very good oncologist. What he said to me at the beginning was, “You’re most likely going to be on chemo for life. We’re going to do what we can for you. If you had waited 6 more months, I wouldn’t be able to help you at all.” If I remember right, that was like our first meeting or our second meeting he said that to me. While it’s hard to hear that in the moment, I believe I have enough self-awareness to be able to [say], okay, that fucking hurt. But I see what he’s saying. My condition is very poor. It’s going to be what it’s going to be. 

At this point, all I can do is succumb to what they offer me and hope it helps. I did a little bit of reading on my own at the very beginning, and then I realized that was a poor idea at the very beginning. The type of detail oriented person that I am, I will be in the weeds where I’ll be teaching [doctors] stuff. So I didn’t do that.

I tried to focus on what I knew were the big words, so that I could look those up and understand what they were talking about, without having to dive into the details. I knew the details would come. I just tried to navigate it the best I could. For me to absorb something like this, I have to break it down into chunks that I can absorb. Sometimes they become really small chunks, like single words. Adenocarcinoma, suspected metastatic disease. Because I’m a writer and because I’ve been an editor of other people for many years, I can look at the report and figure out what I’m looking at and have a decent understanding without having to read the whole thing. 

Treatment

What chemo treatment were you on?

He said “most likely, you’ll be on chemo for life.” So far, he’s been right. I’ve had a little break here and there. I’ve been on chemo pretty much since we talked. At first it was FOLFOX, which is what he put me on. I was on FOLFOX starting December 5th of ’21, and I had 16 full strength treatments, which was a very bad idea. 

Dealing with neuropathy

I did not understand what neuropathy felt like. I probably should have told him much sooner that I was having issues. Part of the challenge, and this might sound crazy, is that right when I started chemo, I bought all new socks. I kept thinking that the feeling I was feeling under my toes was my new socks bunched up under my toes. It’s actually the underside of my toes being deader than a doornail. Lesson learned. My toes are pretty much numb. I have some feeling in my big toes. I have some in my hands. 

I did do icing where you cool your hands and feet down. However, I didn’t necessarily understand what I was trying to achieve with the icing. I used frozen water bottles because they would stay cold much longer than the gloves you could buy. I bought cycling water bottles and I was holding them and resting my feet on them. Well, the soles of my feet are fine, but from the balls of my feet forward where I didn’t use the ice, that’s the part that’s numb. Same thing with my hands. My palms are fine, and up to here pretty much is fine on each hand, but the ends are starting to become dead because I didn’t chill that area enough. Knowing what I know today, I would have handled the cold items much differently to target the proper areas that are really going to get the terrible neuropathy.

Jason is apart of Man Up To Cancer

That experience is helpful to me when I talk to patients who are behind me. I get a lot of that because I’m one of the administrators at Man Up to Cancer’s Facebook group. I’m a pretty large part of what we have going on. I’m trying to advocate for myself, but also helping many, many, many new patients who come in who have all these questions about all this crap that I’m talking about. What’s going to happen to me? Well, get yourself some cycling water bottles, but make sure you hold your fingers on them and not your palms. Put your fingers on them and freeze your fingers. Freeze your toes. 

That’s the stuff you need to keep nimble. Especially for me as a photographer and a writer. It’s a little discouraging to have so much numbness, but I just pushed through and it’s what it is. They work. They’re just a little more fumbly than they used to be. 

It takes longer to put buttons on if I’m buttoning up a shirt. Stuff like that, but I can still do all the things I need to do. I started with FOLFOX. 

What led you to want an HAI pump?

Through Man Up to Cancer and one of my friends who I’ve met there, Mike, I learn about the HAI pump. I go to treatment and I say to my doctor, “Hey, I have rectal cancer. That’s to my liver. That’s what they use this for.” “They don’t use that anymore. That’s an old technology,” is what he tells me. I’m like, “No, doc, my friend just had this done. He has one in his body.” [He said], “No, no, that’s old. That’s not going to work for you.” 

Jason sought out getting an HAI pump

I won’t say I took him at his word because I realized that he didn’t understand what I was talking about. He did what many doctors do, which is they try to bluster you into thinking they know because they don’t want to appear that they don’t know. I know at this stage of my life that it’s okay to say, “I’m not really sure what that is. Let me find out and then we can talk about it and see if it’s right for you.” Even though he didn’t do that, I’m not mad at him, I understand. At the end of the day he’s a guy trying to do his job and go home to his family. He’s doing the best he can. He probably sees a lot of people who die. I get it, I’m not mad. At that time I was a little mad, but today I have a different perspective. 

Describe your experience getting an HAI pump

He told me this thing didn’t exist, so I started researching where they would do this type of stuff. I came across the NCI center where I live. I go to the University of Pennsylvania and I discover that the technology was really pioneered by somebody at MSK. The gentleman who does it here at the University of Pennsylvania trained with that person. Well, the University of Pennsylvania is 20 minutes from my house. I’m going to set up an appointment with this guy and see if I could do this. Regardless of what my other oncologist says, this guy’s a surgeon. Maybe I’m eligible for this thing. 

He says, “I want to operate on you. You’re in great shape. You have no other stuff going on,” so we schedule it. We’re going to put in an HAI pump. I wind down my FOLFOX treatment at the other hospital and switch all my care to Penn. I had a little bit of a chemo break there at the end of that summer because I had to be off before he could cut on me. I was on Avastin with FOLFOX.

Jason's incisions

On October 20th of 2022, a year and 2 months ago, he put in the first HAI pump. A couple of days later, a hematoma formed on top of it. There was so much pressure that the incision popped open. We fought for a month to try to get it to heal. I went to him on November 16th,  a little bit less than a month later. I went to him for an appointment so he could check it out, and he says, “I want you to come back tomorrow. I’m going to put you under and I’m either going to wash it out and stitch it up so that it’ll heal or I’m going to take it out, and I’m going to put in another one on the other side. We won’t know until I start what I’m going to have to do.” 

I have to just submit to that. He just did this surgery. He opened me up straight up and down. My abs are still healing. I got this problem with the hematoma, and I’m bleeding and bleeding every day. Long story short, I go on the 17th. I wake up on the 18th with a new pump on the other side. That’s what he felt he had to do. He glued me shut again. 

Side Effects

Jason shares his cancer treatment side effects
Jason had a skin outbreak following cancer treatment
The incision opened a second time

Not long after that, it opened up again. We fought and fought and it was almost closed. I’m not sure what happened, but it opened back up like this wide. It was almost done. He put it in on November 17th. End of December, it was almost finally healed up. I don’t know if I maybe shifted wrong and it twisted and I bumped it and it opened. I don’t know if maybe I went to put my shoe on and my thigh bumped the bottom of it. It was very tough for me because I’m very lean. I don’t have any stomach fat to put it in right. I don’t have a lot of [pinching stomach]. There’s nowhere to put it. 

The first one was over here [touches scar on left side of the abdomen]. This one didn’t heal at the same time as when this incision was made [points to scar in the center of the chest and abdomen], because they have to get to the artery for the liver that way. He was also looking around to see if I could be resected on that day. That incision goes from here [points to the bottom of the center of the chest] and it ruins my belly button. My belly button used to be a perfect circle. It’s not anymore.

Then he did this one a month later [touches scar on right side of the abdomen]. It didn’t heal properly, so at the end of December, now I have this incision and it’s open an inch again. Well, not only is it open by an inch, but you can see the pump inside me. The pump and the catheter. You can see a little bit of the pump sticking out of the thing. While all of this is going on and I’m dealing with this crap, somehow I still managed to convince them to pump the drug into the pump. They put a treatment in the first one while we were battling that because we thought we were going to be able to fix it. When that didn’t happen, they put in the second one and it was healing. Then we did the first treatment, so now that made two and then I think we did one more maybe. Before we did the third one is when it popped open again. 

Did you let your doctor know the incision had reopened?

I knew if the doctor saw how bad it was, he was going to try to take it out, because I knew that I wasn’t healing properly. I’m on chemo. I’m on irinotecan and vectibix while this is happening. I knew he’s not going to do anything. There’s nothing he could really do to help it. I had a home nurse helping me to manage the wound. She was packing it with some Aquacel, which is like a silver infused cloth that helps you heal more quickly. She was packing it with that. She was here like every 3 or 4 days. 

In an attempt to keep it from popping worse, I was only showering right before she came so that it had 3 days. I literally laid on my couch for weeks. I would wake up, I would lay there, I would eat breakfast in that spot. I’d watch TV all day in that spot and go to the bathroom once. Literally, I just laid on the couch in the same position for weeks at a time because the location when I showed you where those cuts are, those cuts are also right at the base of my ribs, which is where your body flexes when you bend. So every movement I’m making is just another movement that’s preventing it from healing. 

Today, I can look back and say, “Doc, you probably should have stitched or stapled me shut.” It’s not his fault. I’m not mad. It’s what it is, but I managed to get two more treatments of the drug, because I discovered how to palpate the bump where they would fill it, and I would bandage myself in a way that all they had to do was just stab me in the bump, and they would never see the incision to say, “Yo, bro, we need to take this out of you right now, because maybe it’s infected.”

Jason's incision opened a second time but he didn't tell his doctor

I didn’t care because I knew in my heart that that drug was the only thing that was going to get my liver to a point where I could maybe live through this. I got 3 and a half treatments of the drug before they finally took it out. Every time we check my liver, all the values are in the green for someone who is perfectly healthy. Did that do it? I don’t know. Had I given up earlier, would it have impacted me? I’m pretty sure it would have. I fought and fought and fought until I could see the edges of the incision getting red, and it felt kind of stingy before I said, “Hey, doc, I think we should probably take this thing out right now.” And he did. He took it out on Valentine’s Day, so now I don’t have either one. It’s supposed to be in there for, pretty much, life if you get to that point. I don’t have either one of them though.

Did you have any additional side effects from cancer treatment

To make my story much shorter, in conjunction with the pump, they were doing vectibix and irinotecan. I had all this skin stuff going on. My chest broke out. Basically, from the waist up, I was one giant 14 year old pimple. It was behind my ears. It was in my neck. It was in my ears. It was in my nose. It was horrible. I was on that during all this stuff with the pump. I was on irinotecan and vectibix until June. 

Jason broke out in pimples due to cancer treatment
Jason was on vetibix and irinotecan

In June, we decided it was time to look at radiation for my primary tumor, which is still right where it was at the very beginning of all of this. It’s still there. I’m sitting on it right now. I did irinotecan and vectibix. Then we did 28 radiation treatments. I do not recommend them to anyone because it fucking hurts. The first 3 weeks were okay. It was the last week. All the fatigue kicked in and I was dead for like a month. I just laid around the house.

I had trouble going to the bathroom. I found out later from my surgeon who’s hopefully going to be cutting on me, that I had a fissure that I was unaware of. That was adding to the pain and the difficulty that radiation causes. There would be times going to the bathroom where I was in tears, like literally just screaming and crying in the bathroom. I had to yell at my wife to go downstairs. I didn’t need her to hear this. It’s just horrible stuff. 

Considering a colostomy

Radiation is over. As I mentioned earlier, I’ve had the most normal bowel movements that I’ve had in the last 2 years. In the last couple of weeks, I’ve continued to heal from radiation. My next step is going to be a colostomy because my tumor is right above the top of the muscle stack, I guess. I’m not sure of the terminology, but my tumor is right at the top. I’m not sure whether they could reconnect me afterward. 

Based on the fissure pain that I’ve had and all the other pain that I’ve had, I’m very inclined to just tell him to sew me up and do an APR and make it permanent. Not only because it relieves me of all that pain and stress, but because if I take the chance of doing the reconnection and end up being one of the people who struggles with frequency or urgency – urgency more than frequency – there are times when I’m on the side of the racetrack and I can’t get to the bathroom in 2 minutes. I’m not prepared to crap myself on the side of the racetrack in front of 4,000 people. 

One and only one time, I had an urgency issue not long after radiation was complete. I was standing and doing the dishes. I farted once, and I thought, oh, I should probably get the dishes done so I could go to the bathroom. I farted again and I went, oh, I should probably do that right now. I turned around and I went, oh, I’m going to do that right now. I literally dropped my drawers and crapped into my hand in the middle of my kitchen. So an ostomy, for all of the challenges that it can bring, actually sounds kind of liberating and nice given all of the pain. 

»MORE: Navigating Life with an Ostomy

Jason considers getting an ostomy bag

The last 2 years of my life have been dominated by thoughts of how my GI is going to act or react to a stimulus, a food, or not enough water. It sounds very, very nice to think about the fact that maybe just taking care of a bag every other day, once you figure it out. I know there’s challenges to figuring it out but the consistency, the simplicity, mostly the consistency and the lack of worry. 

I want to continue to live my life as long as I can. Maybe they take that out, and then I find a liver transplant and I become NED, and I’m good for another 20 years. I’d rather live that with a bag than I can’t go work for the next 20 years. Who’s going to pay my mortgage? I don’t have savings. The kind of job I have is not exactly the kind of job where you’re making enough money to save plenty of money for the future. It doesn’t really work that way. It’s what it is. But it’s like I said before, it’s been a crazy ride.

Preparing for surgery

I was supposed to have Avastin last Wednesday and they canceled it to get me off in preparation for the surgery. I had a consultation with the surgeon. We discussed it. I told him what I was interested in, which is what I just told you about. I need to be able to manage this consistently above all else. I don’t care what I look like. I don’t care if the bag sticks out of my neck. I gotta live my life and I have to be able to do that consistently. He’s the second surgeon we saw. 

The first surgeon was unwilling to do anything so my oncologist recommended this gentleman who is also at my hospital. Other than my NP that works with my oncologist, he’s the only doctor I’ve had so far who’s actually asked me a bunch of questions. How are you feeling? Why do you want to do this? What do you think is next? What are your goals? Where are you trying to get to? He’s the first one who took an active interest. 

BYOL: Bring your own liver

Remember I said before that I had to teach my doctor stuff? Well, I taught my first oncologist about the HAI pump and about the icing because he didn’t know that was a thing for anybody but breast cancer patients. I taught him those two things. We fast forwarded to the last couple of months. Six weeks ago I had an appointment with my current oncologist, and I brought up a program to him that they do at the University of Rochester, which is what they call a BYOL: bring your own liver. I would find my own donor once my primary tumor is gone. If I have no spread anywhere else and I get a new liver, theoretically it won’t come back. 

Jason discusses a program called bring your own liver

I have a friend who’s had this done at this hospital. I go in and I say to my oncologist, “Hey, you need to get the primary out because this is the next step.” He says to me, “You can’t get on the list.” I said, “Doctor there isn’t a list for this. You bring your own person.” He said, “That doesn’t exist. You can’t get on the list because you have cancer.” I said, “Doc, I’m telling you this exists.” He said, “No, it doesn’t.” I left and I’m not mad because I know that I’ve planted a seed because of what happened with the first guy. 

I go back 2 weeks later for treatment, and I’m sitting in there with my NP. I see her every time, unless it’s right after a scan. The first time was right after the scan. I’m ready to talk about doing the surgery to move forward. We’re in there for 15 or 20 minutes. She’s talking about side effects and we’re just chatting. He pokes his head in and he says, “Remember that thing you asked me about the last time – the bring your own liver deal? We’re in the middle of doing that here.” Two thumbs up, doc. I’m glad you figured it out. 

But at this point, my intention is to be one of the first people on that table for that. I have to get the primary tumor out, then I have to figure out what are the requirements, and then I will go find someone. I don’t care if I have to walk every street in this country and knock on doors. I will find someone who will be willing. I have many friends who have told me, “Just tell us what’s needed and we’ll all go get tested.” 

My industry attracts people who are very wealthy because it’s a hobby for them. Think of what it costs you to buy a car. Now think of racing a car and how bad that’s going to beat up the engine and the transmission and all the other parts. It’s a millionaire’s hobby in most cases. I have some friends in that club that are very kind and generous to me. They will go get tested. These are people who are public figures-ish [who’ve said], “I’ll go for you. I’ll do this for you. I don’t care, just tell me what I need.” Fingers crossed that’s where we get. That’s the hope. That’s the goal. 

Reflections 

Showing gratitude 
Jason thanked his doctor for taking time to help him

I’m not sure what day today is, but last Thursday I think was day 751 since I got that diagnosis. Remember, he told me if I waited 6 more months, there’d be nothing he could do for me. We’ve now clocked 2 years. I actually sent him an email on the anniversary of my first treatment and said, “Hey, doc, today is the second anniversary of the first time you treated me. I’m very thankful that you gave me the care that you did because I’m still here.” He hasn’t responded, but I sent the email because I’m very, very grateful that all of these people have taken an interest in getting me to this point. Hopefully we’ll get to the next point.

What cancer treatments are you currently receiving?

Every 3 months we do a scan because I’ve been on a different treatment right now than I was on before. Before I was on capecitabine when I was getting radiation. I wasn’t getting Avastin at the same time, but once the radiation ended, they kept the capecitabine. They took it from just radiation days to 7 days on, 7 days off, and now you’re taking twice as much. Then they add in the Avastin. We’ll scan again in January, which was scheduled anyway. 

Before I got to the surgeon, that scan on January 2nd or 3rd was already set. Once I went to him, he said, “Okay. Well, you have a scan coming here. That’s right around the time where I’m going to be ready if you stop doing Avastin on this treatment.” So that’s what we just did. We quit Avastin. I see him on the 9th. 

Jason's favorite band in concert

I know he’s not going to cuddle me that week because I have concert tickets for the 10th in Baltimore and concert tickets for the 12th in New York City. Same band, two different places. My favorite band. I’ve already seen him 4 times on this tour. This will make 6 and he can cuddle me the next week, but I’m going out with those two good memories of being in arenas I’ve never been in before, seeing my favorite band with new people both times. Then the surgery is going to be what it is. The next step is going to be what it is, but I can’t control any of that part. I can just get to that point, hopefully.

What tips do you have for someone getting a colonoscopy? 

That’s the real trick for the colonoscopy. If it has to come out, think about what you’re putting in a couple of days before.

When I went for my first colonoscopy, I had no idea what to expect. All I know is I’m already dealing with the biopsy and all the other stuff and they say you have to go for a colonoscopy. Here’s the instructions. The instructions say to buy Gatorade, buy Miralax, Dulcolax I think I took also. There’s this cocktail you mix up. Don’t buy anything with red #40, green #12, whatever it says on the instructions. I went to the store and I proceeded to spend $100 on Gatorade and all this other garbage. Half of which I didn’t realize had the red in it. 

Jason shares his colonoscopy tips

But my tip for the colonoscopy, remember that everything that goes in has to come out. In the 3 days leading up to your colonoscopy, when you have to prep on the last day, if you eat a porterhouse and then you eat 30 wings, that’s going to feel like death on the way out when it’s forced out by the laxatives that you’re taking to make the process work. If you go, have eggs and French toast, maybe a turkey sandwich for lunch so you get some protein, maybe a protein bar, because that’s not going to be a giant piece of meat that your stomach has to digest. Pasta, stuff that slides in and slides out is the easiest way to explain it.

That’s the real trick for the colonoscopy. If it has to come out, think about what you’re putting in a couple of days before. Eat a couple bananas. They’re nice and healthy and they’re going to pass real easy. Maybe a prune or 3. If you clean yourself out before it’s forcibly cleaned out, there is no, “Oh, my God, this is so horrible. I’m in the bathroom all night,” because you blow it all out and it’s all gone. That’s the real trick. Once I tell people that, they’re like, “Oh my God, it really wasn’t that bad.” I told you it’s not going to be that bad. You have to listen and actually do the things.

»MORE: What It’s Really Like To Get A Colonoscopy 

What advice do you have for someone who suspects they have colorectal cancer symptoms? 

The first one – it’s one of the hashtags that I use every time I make a post about my cancer. Because every post that I make is public, people who I don’t know have seen them and sent me messages saying, “Thank you for talking about this. You made me go to the doctor and I’m clean.” This happens regularly so I just continue to make them all public. 

That hashtag is #GetYourButtFingered, please. It’s not something to be ashamed of. We all have buttholes. We all fart. We all poop. Some of us get diseases, and it’s completely curable if you don’t ever get to the point where you have it. If you have stage 1, they can get it out of you and you don’t end up like me, turning 50 in 10 days but staring at the end of my life at the end of my hat. Please just go to the doctor if you have any poop weirdness. Weird shape, weird smell, weird color, weird anything. Any kind of blood on the paper. Any kind of blood in the stool or in the bowl. Any kind of pain. They can fix you, especially if you go before you end up like I do. Please, just go to the doctor. 

Jason with a rescue cat

Send me a message on social media. I’m very easy to find. If you have questions or anything at all, anything I can do to help. Anyone who is at this point, 45 years or older, make an appointment today. If you’re under 45 and it runs in your family, make an appointment today. Even if it doesn’t run in your family and you’re under 45 and you have poop weirdness, tell them it runs in your family because they can’t fucking check your family history. Just tell them you have a problem and go to the goddamn doctor. You can call me before that, but please, go to the doctor. 

It’s so important and it’s so easy. It’s 20 minutes of your life. I can give you tips on how to make the colonoscopy easier so it’s not sucky like many people go through. Just go to the doctor. 20 minutes, it’s over and it’s a great nap. You wake up and you can go get chicken nuggets, fries, and a big soda and you call it a day. Just go to the doctor. That’s the most important thing that I could tell everybody.

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Categories
Chemotherapy Lymphoplasmacytic Lymphoma/Waldenstrom Macroglobulinemia Non-Hodgkin Lymphoma Patient Stories R-CHOP rituximab (Rituxan) Treatments

Komal’s WM Non-Hodgkin’s Lymphoma Story

Komal’s WM Non-Hodgkin’s Lymphoma Story

Komal often visited the doctor as strange symptoms arose, including nosebleeds, weight loss, fainting episodes, and hair loss. Her doctor told her she likely had anemia and was not vigilant to check her for other issues. This led Komal to switch doctors, who discovered she had a rare type of lymphoma called Waldenström macroglobulinemia (WM) and an enlarged spleen. Doctors told her she was one of the youngest people in the UK to have this disease. 

Komal began R-CHOP chemotherapy to combat her cancer, but she did not complete her first cycle due to various side effects which she was not warned about by her medical care team. Further lack of information from the hospital Komal was at ensued, which led her to switch hospitals, only for her to receive similar care. Rather than accepting this, she sought a second opinion who helped her better understand her treatment options, including stem cell transplant.  

Today, Komal’s cancer is stable, in partial remission, and is being actively monitored while her care team considers giving her a stem cell transplant. She shares her cancer journey with us, including the importance of standing up for yourself, her quality of life with lymphoma, her side effects from chemotherapy, expelling misconceptions about cancer, and her advice to those on their cancer journeys.

Komal shares her non-hodgkin lymphoma story
  • Name: Komal
  • Diagnosis (DX):
  • Staging
    • 4B
  • Symptoms
    • Nosebleeds
    • Extreme fatigue
    • Fainting
    • Bruises
    • Hair loss
    • Breathlessness
    • Bone pain
  • Treatment:
Komal shares her timeline of symptoms and treatment

I think it’s truly beautiful to share your story, but also reminds people that they’re not alone.

Komal

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Table Of Contents
  1. Symptoms & Diagnosis 
  2. Chemotherapy
  3. Being A Patient Advocate
  4. Quality of Life
  5. Cancer Treatment
  6. Living With Lymphoma
  7. Ongoing Cancer Care
  8. Reflections

Symptoms & Diagnosis 

Tell us about your diagnosis

I never knew in a million years I would be diagnosed with cancer.

My name is Komal and I have a rare cancer called Waldenström macroglobulinemia – it’s a long name. It’s WM lymphoma, you can say. It comes under blood cancer, non-Hodgkin lymphoma, rare cancer, B-cell lymphoma. 

I was diagnosed in 2021, and I had high-grade aggressive cells and I had an enlarged spleen 3 times larger than normal size. And of course, something was growing inside me. Initially in 2020 I already recognized this. 

What were your initial symptoms? 

The GP that I used to go to in Manchester, England said, “It’s going to come and go.” They were not clear with me, but they kept on taking blood tests to see if I am anemic. I started with anemia and they kept asking me to come back and forth, but I said, “I need some medication or something. I can’t keep on going [like this].” So I didn’t want to go again. 

I felt like I needed a new doctor to check on me. That’s when I moved to another [doctor] and I felt much better because I was looked upon quickly and after my blood test they said something is abnormal. [I received the] results in March 2021. I was like, “Oh, what is wrong?” They said, “We’re going to refer you to a hematologist.”

I used to have nosebleeds. I had unexplained bruises – I’m thinking, what’s going on – and weight loss. I lost 6 kilos, so things were unexplained. I was not feeling well either. 

»MORE: What Does Cancer Feel Like?

In 2020, I had a bald patch. I was like, “Oh my God, what’s going on? That’s abnormal.” My eyelashes were falling out. I thought, “Maybe it’s a castor oil allergy.” Then I started bleeding in December. My nose was bleeding and I was losing so much hair. I thought it was normal for an anemia patient. My doctor said, “That’s not normal.” I was losing hair, losing weight, not eating well, and my body was collapsing. I [fell] on the floor. My dad picked me up and said, “Have a banana, have this.” They thought my blood pressure was low. 

What was happening in your life around the time you had these symptoms?

My sister was like, “Are you sure you want to move?” I was also moving to another home. I used to live very close to City Centre in Manchester, so I was like, “Yeah, I’m 100% sure. I want to be independent.” I think that was a bad idea for me to move. 

Did you suspect you had cancer at that time?

Things went a bit downhill in my life, and I think it hit me when the doctors were saying, “We need to talk to you face to face.” I’m like, “What do you mean?” They said, “Your blood cells are abnormal.” It’s like, what is supposed to be abnormal? 

I spoke to my sister. She was a doctor and she said, “It means it’s abnormal.” But they didn’t tell me anything. I think my sister is the one who saved my life by saying, “Something is off with you. You should go to your doctors for a check up.” 

She was saying before diagnosis, maybe it could be lymphoma, because [she was] looking at the ultrasound diagnosis as well. I was like, “No, honey, I don’t have blood cancer. It can’t be.” I was very determined that it must be a blood disorder, but I [didn’t believe] I had cancer. That never came into my mind. 

How did you react to receiving your cancer diagnosis? 

I never knew in a million years I would be diagnosed with cancer in April 2021. I was like, “What? No.” I didn’t take it really well. I threw my stuff on the ground because I was so frustrated. I was like, “No, this is not it. This is unfair. Why is life so unfair to me?” My family kept saying, “Calm down, calm down.” My sister was like, “Don’t worry.” I think the more months went, the more I accepted that I had cancer. 

My sister and I had a little bit of an argument because at Manchester Hospital, the hematologist was writing to my sister rather than to me, the patient. Communication is key if you really want the patient to be in the know. She was writing to my sister and my sister was writing to me. The thing is, I should get the appointments [directly]. I should know when things are [happening], so that was not professional. They did ask me initially, “Do you want your sister to know?” But I didn’t know they would write to each other and that I would never get to know about when my appointments are. Only my sister knew. Because she works in a hospital, she wouldn’t be able to constantly give me emails. I think they should email me only.

»MORE: Reacting to a Cancer Diagnosis

Did you take anyone with you on diagnosis day?

The more you understand your disease, the more you accept it.

Encouraging people to understand their diagnosis

They told me they wanted my sister to come on the diagnosis day and that I wouldn’t want to take my mom because she would start crying. I did take my mom initially for the diagnosis day, because I said to my mom, “I do not want to keep on repeating myself and what I have.” My sister knows medical terms so she was easier to go with. 

On the diagnosis day, she asked the doctors and the hematologist what’s my survival rate and am I curable? I know the word lymphoma is coming. I know I have cancer coming. I have also done research beforehand and I have accepted in a way that I have this. Looking at the diagnosis with the ultrasound, I was connecting the jigsaw puzzle of what I have. I said, “Maybe, sister, I have Waldenström macroglobulinemia.” She said, “No, no, that can’t be.” 

I mentioned the name even though I didn’t even know what it was. I know it affects white cells, it lowers your white cells and it gives you plasma cells. There’s an abnormal plasma cell that gives you IGM protein, so I have studied my disease. I think that’s very important to study your disease. The more you understand your disease, the more you accept it. Acceptance is very important with cancer. Once you accept it, then you can start living your life. 

Chemotherapy

Komal was on R-CHOP chemo
What cancer treatment were you on?

There were a lot of things going on. I was signed up with Manchester Infirmary Hospital because I didn’t have any preference. I didn’t know how the team members or the team people would be. I was just referred by my GP to them, and I had my R-CHOP chemotherapy for about 5 to 6 months to treat high-grade [cancer]. They said, “We suspect that you have transformed to high-grade,” but later on they confirmed that I had high-grade aggressive cells, which were treated with R-CHOP. 

What is the status of your cancer today?

Now I have a low-grade. They said my PET/CT scan that I had this year in 2023 is much better than what it was 2 years ago. Now it’s reduced completely to its former size. My lymph nodes are nearly reduced to small size. 

I just have active cancer cells in the chest area. As long as it’s not doing anything, my sister said it’s fine and to take it easy and keep eating healthy food. So it’s much better now, but the past 2 years it was a mixed response. This year it’s like, wow, magic. I had a nearly clear scan. Last year they were telling me the spleen size was still enlarged. I’m happy that this year it’s normal size. 

Did you have any side effects on chemo?

When I had my chemo in 2021, I wanted to give up. I initially didn’t complete my first cycle because I reacted to rituximab. My heart [was beating] so fast. I still have that issue at the moment. I feel that impact when I travel with speed.

Komal shares her side effects of chemotherapy

My heart feels really weird, like it’s tightening. I have had heart scans last year to rule out if I have any heart disease, considering my dad has heart problems. Alhamdulillah, my heart is normal. They said they might do [a scan] with a dye contrast. I keep [telling them] that when I travel, even when the train goes fast, I feel weird in my heart. I’ve asked, “Can you please check this again?” That’s why they’re going to do it with dye contrast, which is still on wait. It’s a long waiting time. 

I still have bone pains I’ve been dealing with since before diagnosis until now. I’m dealing with numbness in my feet, so I’m trying to walk. I feel like I’m flying a bit high. I fell down this Thursday badly on the road where there was a car. I was in the middle of the road. Nobody picked me up, or said, “Are you ok?” I picked myself up gracefully and I was happy that I was not fractured or bleeding because I can easily fracture – that’s also a problem I have. 

I have a dental issue as well, so I’m going to the dentist to get my treatment. I have cavities and they did fill them. They said because I have non-Hodgkin lymphoma, I’m still able to get dental. One thing I didn’t [learn from] Manchester Royal Infirmary hospital (MRI), was that you could get dental help. 

Every 3 weeks I had chemotherapy, which is not bad, but I felt like it was drugs, drugs, drugs, and then more side effects. I think the first cycle and the third cycle were much worse because I had more side effects. You also feel weird in your mouth, like an ulcer or something. I thought I could take these side effects. 

Did doctors prepare you for chemo side effects?

They kept saying to me,”Please don’t read about side effects.” They gave me a leaflet, but said, “Don’t read it now,” because I was a very anxious person. They were not [understanding] of me being an anxious person. Some hematologists ask, “Why are you anxious?” It made me think, “Are they [understanding] me as a patient or are they not?” That’s why I moved to Christie Hospital because I wanted a better team. 

It’s not like everyone was [bad], just one particular hematologist and a few of the nurse specialists. I moved to Christie Hospital. I judged the building by its cover and not the inside. Unfortunately, I am in a situation where I expressed my feelings to them and I don’t think they’ve taken it really well. They know that I’m going to move to another hospital again. It will be my third time.

Did anything help with the side effects?

The first cycle, as I said, I didn’t complete because I was having a reaction with rituximab. I told them my heart was beating really fast and they said, “Nothing’s wrong.” I asked, “Can you just stop the treatment?” I was so worried. After that I went home and I was feeling sick. Even the anti-sickness medicine was not working for me. Whenever my mum fed me, it came out. 

I felt like I was going to collapse. You feel like you’re going to collapse when you have this chemotherapy, especially R-CHOP because it’s high-intensive. They also gave me an injection for thinning blood clots because you’re on the bed all the time. You can’t move. I remember it exploded on my clothes. The blood exploded everywhere. I didn’t make a scene, but I told the nurse. They were a bit rude, one of the nurses. She said, “Oh, you’re such a baby.” I meet different people with different mindsets and I’m just like, “God bless you.” That’s all I’m going to say. 

I feel like the side effects that I had from chemo were the worst. The first cycle was the worst, because everything was entering my body. When a drug enters, your body is trying to figure out what it’s doing. It’s attacking the cancer cells, but it also attacks the healthy cells. It doesn’t just attack your cancer cells. That’s what happened. 

It doesn’t let you eat properly. You lose weight. Again, I had a low weight at that time and a low BMI. They were like, “Eat, eat.” I was like, “I feel like I can’t eat. It’s killing me inside.” 

Being A Patient Advocate

Encouraging people to stand up for themselves

You need to remind yourself of your value and you need to step up and stand up for yourself. That’s what is happening now – I’m standing up for myself.

Do you feel like your first doctor listened to you?

No. They were saying I had anemia. I did take iron tablets. I had hair loss, and I felt fatigued and breathless. I vlogged. Three years ago I joined YouTube. I remember when watching my old vlogs, I did sound breathless, like I couldn’t breathe. That’s proof that I wasn’t feeling well. And I was so fatigued. I was extremely tired. Even walking 11 minutes to my GP was a lot for me. I can’t walk for 11 minutes, I’m too tired. I’m thinking, I can do this, I can do this.

They did blood tests that time. The GP that I use, I still have them but I have moved to my local now because I think I’m done with them. You know when you feel like they’re helping you, but they’re not helping you? You need to remind yourself of your value and you need to step up and stand up for yourself. That’s what is happening now – I’m standing up for myself. There’s a lot of things happening around the world and I’m not forgetting that. But I think you need to focus on yourself too. You can’t keep forgetting yourself as a cancer patient. I do believe in spreading love and not hate because there’s a lot happening around the world. I just feel like I keep forgetting myself. I need to take care of myself as well, because who else will?

Switching doctors

The first GP said [the problem was] anemia. I said to my sister, “I really think I should keep on looking for another GP.” I got my appointment in March. I used to faint a lot in 2020 as well. [My cancer] was not visible and everyone was doubting what was going on. “Why are you fainting if you’re unwell?” I was like, “No, I’m fine. I’m sure it’s just anemia,” but I seriously did not understand what was going on. 

I had hair loss, bald patches, and white hair. I’m like, “What is going on?” Things were not making sense for me at that time. I used to have heavy bleeding. I do have a second opinion as well, so there are a lot of doctors involved in my case now. But I’m more than happy to have a second opinion from London. She’s more knowledgeable than I feel the Christie Hospital was. Maybe they just follow the principles, but I’m going to be honest, I love her.

I met her recently at a conference that I went to, WMUK. They are international, based in Florida, USA. They [held it] in Birmingham and Amsterdam, so I went to Birmingham last month. It was really good and I got to meet my second opinion and other people around the world. It’s really nice to be able to talk about Waldenström macroglobulinemia, how you can manage your symptoms, and actively monitor it. That was very useful. 

Is it common for young people to get WM? 

I’ve been told many times that I’m the youngest patient in the UK to have this disease.

I got to meet different patients. I didn’t get to meet young patients like me. There are young patients in London, but I’ve been told many times that I’m the youngest patient in the UK to have this disease. It usually occurs in older people above 65 who are caucasian. I am from Denmark originally, so I could have it from them. When they did a mutation test at MRI in Manchester, it was negative. They usually look for MDY88 DNA, but it was negative. 

Did you get a bone marrow biopsy? 

My second opinion wanted me to do a bone marrow biopsy this year to see if it turned positive. I was not keen to do a bone marrow biopsy again because it’s painful. I don’t know how I [got them to] agree to do it under general anesthesia (GA). My sister said, “No, don’t do it because it’s under the tube.” I said, “Don’t show me the videos and pictures. I’m not interested. I’d rather just do it on GA.” 

I was dealing with an enlarged spleen 3 times larger [than normal]. It was 30 centimeters in the ultrasound and 31 centimeters in the PET/CT scan, which is why they were saying we have to do a bone marrow biopsy. They didn’t want to delay my treatment because they could immediately see it was growing. 

Reacting to a life expectancy 
Reacting to a life expectancy

If they didn’t give me treatment, I would’ve possibly been hospitalized or worse because I felt I was enduring a dire situation. I felt that. Of course, they can’t tell you, you’re going to die. They will be diplomatic. They won’t be straightforward, especially at MRI. But the Christie Hospital was very direct with me and told me I don’t have much time. They told me I have a short life [expectancy] in October 2021. That hit me so hard. I was thinking, “Why? Why did they tell me about this?” I’m like, “That’s up to God.”

I believe in Allah, so I would do my best to leave it up to God. But there were 4 people telling me, “You don’t have much of a life with this disease and because of this, what we’re doing is giving you a treatment whenever you need it. If you are relapsing or high-grade, we’ll give you a treatment, then slowly we’re going to give your body time to recover.” They said, “This chemotherapy doesn’t really improve the quality of life.” 

Were you given alternative treatment options?

My second opinion talked about a stem cell transplant and said, “If that is needed we might give you.” But the Christie Hospital – there’s a debate going between these two people – said, “We might not do it because it could be a risk of 20% death and 80% survival.” But why are they looking at death only? Why are they not looking at the good, positive impact? 

They were telling me, “Okay, you have reduced lymph nodes and they’re still in the chest area, but it’s looking as if it’s clear and it’s still partial remission you are in,” thank God.

Do you feel your doctors have been straightforward with you?

The second opinion has a way of telling me the truth and says that there’s active cancer cells. I’m like, “Why couldn’t the Christie Hospital say that?” I’d rather you give me honesty and truth. Truthfully, nowadays, people do not have the ability or the courage to say [these things]. I’m seeing it in today’s world and today’s generation. But I like to speak the truth rather than [spread] lies, manipulation, and gaslighting. 

I feel like I wasn’t treated well enough at Manchester Hospital, to be honest. That’s why I moved to Christie Hospital. I thought Christie Hospital would be better, but I think I judged them by their cover rather than the inside. With the second opinion, I can’t move to London. I live in Manchester, I live alone, I pay the bills and everything is [expensive], so it’s not easy to come back and forth. Especially when I have heart problems. It’s difficult now.

I think doctors should be very honest and truthful. Just say it. I’ve heard the worst. People have said, “You’re going to die, you’re going to have a short life, you don’t have much time,” and this and that. For me, it’s a normal conversation because I’m a cancer patient. You hear these things, but to normal people, they’re like, “What? No way. That’s not normal.” That’s because you’re not in that position, but actually, you just have to be a human. 

These days humanity lacks everywhere, to be honest. I think people need to be human, be careful, and grateful in life, whatever they’re dealing with. If you haven’t had cancer or have had cancer, just be grateful in life. Be happy, don’t worry about it, and spend as much time as you can on this earth.

Quality of Life

Describe your quality of life with WM

I’ve been living with cancer. Obviously it’s a bit of a limitation for me. I can’t go in crowded places, I can’t go to certain things. I do go to events, but I go early in the morning so that I know not many people will come. Once there’s so many people, I’m out of there because I don’t want to trip on people. I don’t want to faint or pass out. I don’t want to make a fool out of myself. Yesterday I went to this event in Preston and my mum was like, “Are you sure you’re going to go?” Because they’re worried about me. 

Since I got the diagnosis, my family has been very cautious about me and very worried about me. They keep on calling me to ask, “Are you ok?” Every single day, my mom calls me. She asked, “How are you going to live alone? How are you going to do this and that?” My sister suggested I live alone because she said, “I don’t want you to get infections because of us.” 

Last time she got COVID, thank God I was living alone. Cancer support had some advice and they said, “You should go and isolate yourself. If you don’t have COVID, then save yourself because it will be a risk factor for you.” I think I only had the flu. I didn’t have COVID that time in 2021. 

Have you had any complications with cancer?
Komal had COVID during cancer

This year I had sepsis, I had COVID, and I was hospitalized for 3 days. This year has been a nightmare for me. I’ve been very traumatized, to be honest. Being told to your face that you’re going to die if you go against our rules. It’s like, I want to go home. Can I just go home? Because I can’t sit here for 6 hours or more. They said, “No, there’s not enough beds.”

I asked, “What do I even have? What have you diagnosed me with? Oh, sepsis. Sepsis? No way.” I’ve heard about sepsis, but it didn’t click for me. I said, “If I go home, what’s going to happen?” They said that the complication is death. I said, “You know what, keep me. Admit me to the hospital.” I didn’t have any choice. If I go home, what if I get worse? If I didn’t get any fluids in my body – because I was not eating well and my body was breaking down. 

My mum saw me at my worst. I was coughing a lot. They [thought I had] COVID and said, “Keep your mask on.” I said, “Mum, keep your mask on.” I think it was too late for them to send my mum because all night, she was not able to sleep like me. She was worried and crying. She didn’t want to leave me. I was like, “Don’t worry, mother, I’ll be fine. I’ll be here for 2 days and I’m out.” At least that’s what they told me. 

But sepsis is life-threatening and it’s not fun. You’re on fluids, you keep feeling full and you can’t taste anything. Then they said, “Oh, it was a misdiagnosis.” Then I found out it was a misdiagnosis. I said, “Why did you fool me?” 

How has cancer changed your outlook on life?

I take this cancer as a blessing. Because I believe in Allah, I take this as a blessing. I know a lot of people take it as bad or think life is unfair. In 2021, I thought, “Oh my God, how bad.” Then I took it as a blessing, thinking, “Okay, I got this. I’m learning something.” 

Before, I used to care about what other people say about me. I used to take care of other people rather than myself. This cancer journey has led me to focus on myself and what I want. I think this is a lesson learned, but also a blessing for myself to focus on myself. Like, honey, you need to focus on yourself. You have cancer now. Sit down and focus on yourself instead of other people around you. 

[People] can say whatever they want. It doesn’t mean if it’s true because that’s just a narrative they put on you. Some narratives could be very false about you. People make up rumors. Some people assume a lot of things like I’m living a normal life. I wish I was living a normal life. I don’t think this is a normal life. I’m wearing a face mask and I can’t be in a crowd. If you want to go to an event, you can’t go [because you might] fall down. 

I feel numbness in my feet now. I’ve been telling the Christie Hospital this and I’m actually going to see them on the 20th of November. Hopefully I can tell them what exactly happened and how it happened, but I twisted my ankle as well and I’m wondering if it’s swollen. I can see my knee is swollen and I’m just bearing it. 

Overcoming people’s perceptions of what cancer looks like

I don’t [like to] show people that I go on walks. People say, “Oh, she’s not sick.” My appearance doesn’t look like I’m sick, but inside, whatever the cancer is doing, you won’t ever see with a magnifying glass. You can’t see it unless you make a diagnosis. 

I think a lot of people’s mindset needs to change, especially people with canes and pregnant women. I know there are priority seats for them, but I’m seeing so many people in England being diagnosed with cancer and it’s crazy, but you can’t see whether they’re well or not. They might look beautiful with makeup. They can cover their scars and they heal, but so many people are saying, “Oh, you don’t look sick.” 

I’ve been told by a social worker in the UK, “Oh, you don’t look sick.” It was day one after my chemo. I’m thinking, “How do I not look sick?” It’s crazy to pass these kinds of comments. It’s not nice. Be in our position. You would understand [if you were]. We can’t imagine being in a position [of someone] lower than us who doesn’t even have cancer, but who are not able to live in a house, or don’t have shelters. If we talk about that, we should have to be grateful in life. 

Finding the right support system

I remember I completed my first cycle on the 1st of June. I at least completed it. I took my mum. I was like, “I’m going with mum,” but I felt so bad taking her because they were not letting her get in the ward. There was a lockdown in 2021, they were not letting anyone go in for a bone marrow biopsy. My sister couldn’t get in, despite being a doctor. They only allowed her to go on diagnosis day because they were like, “Okay, she’s a doctor.” Otherwise they would never let other people go in, which is a bit of a pain. At least get me someone. 

My friends asked, “Do you want us to go?” I said, “No, it’s okay. It’s too overwhelming. I don’t think you can handle it.” You need someone who can handle it because you can’t just go with anyone. Everyone has a different tolerance. 

»MORE: Read More About Cancer Support

I don’t think my mum could tolerate it, but she still came despite waiting for so many hours. I said, “Sister, do you want to tell her or should I tell her?” I told my mum I got cancer, so she started crying. I said, “Don’t cry, mother.” I was hiding my tears sitting there and doing nothing. 

Having help getting to and from the hospital

I was so happy my sister said, “I will send your mum to your home. You’re not going to live alone.” I’m like, “Why?” She knew for a fact that it’s not good [to be alone] and I’m so happy my sister told me so. My sister has been very supportive. She has been to most of my appointments in April. In May she was working so she couldn’t. 

She said, “You can get a hospital transport.” I’m so happy that the hospital transport was actually free of cost. They took me from my home to the hospital and from the hospital to my home, so that was a great help. Even the Christie Hospital still gives me a transport home. I think this is great because transport, when you’re living alone, will cost you a lot of money. That’s great because my sister can’t always take me. She still works so I think that’s nice. 

Cancer Treatment

Describe your latter chemo cycles

When I was in the fourth and fifth cycle, I became extremely tired and I couldn’t stand it. After chemotherapy, once you’re sitting in the wheelchair, you can’t stand. Your body is weak. You can’t even get up. My body was breaking. My bones were aching and you have to take steroids to help you with bone pains. It also can give you weight, which came afterward in 2022. I can feel the masses. 

In 2021, they did my PET/CT scan and discovered [the chemo] had worked 50%, but 50% it hadn’t worked. I asked, “What does that mean?” They said, “You have partial remission.” 

Komal is actively being monitored via PET/CT scans

The MRI hospital, before chemotherapy, they were giving me high hopes saying, “You will be in remission in the sixth cycle.” Then they said, “You will never be in remission.” I said, “Well 6 months ago you’re telling me that I’ll be in remission, and 6 months later you’re telling me I won’t be in remission.” 

I was about to [ring] the bell. They didn’t even have the bell. I was like, “Let me [ring] it. Let me find the bell on Amazon and I’ll buy it.” I’m glad I didn’t buy it, but I’m just like, they’re not clear. Why couldn’t you tell me this before? They just wanted me to do [chemo]. I asked, “Is there no alternative to R-CHOP?” I learned from other doctors that there is an alternative. I thought, “Why did MRI hospital say I needed this?”

How long were you on R-CHOP?

I think 6 months because I need to have 6 cycles of chemotherapy to complete it. 

Wanting to give up on chemo
Komal received a bone marrow biopsy at Manchester Royal Infirmary

I kept saying to my sister I want to give up every month. I want to give up. She said, “No, you can do it. You can do it. You just need to think, you did one, you have 5 left. You did 5, you have one left.” She kept telling me to keep going. I asked, “How am I going to do this? It’s too awful to think about. 

With the bone marrow biopsy, they did it under GA. The thing is the MRI people didn’t want to do it under GA. They didn’t recommend it. I asked why and they said it was because I have an enlarged spleen. I can’t stand, sit, or sleep. I’m just in pain, and you’re telling me I can’t do it. I wrote to my GP. My GP was very sufficient. I explained to him that MRI hospital doesn’t want me to do any GA. Also my sister, because she’s a doctor, was also insisting for me not to get it done because she knows how things work. Maybe she saw a video or she has seen people with this and there’s a lot of complications. I think she just wants to protect me.

Being uncompromising 

I don’t think there should be a compromise from my end all the time. I feel like if you’re going to compromise, then where do you take your stand? Where is your worth? I love to stand up [for myself]. So I went to my GP, I said, “Write a letter to her [that approves] me being under GA.” Less than 24 hours later, I got an appointment with GA. I was like, “Should I cry? What should I do?” I was frozen for a while. Then I said, “Oh, it’s tomorrow. Oh my God, I haven’t prepared myself. I don’t know what to do.” I was so scared. I was crying. 

I realized that my tears were not my weakness. I think a lot of people think tears are a weakness. It’s not. It’s my strength. If you have nothing and no one, you have your tears. That builds strength. A lot of people admire me and say, “You’re so inspirational.” I said, “I’m not an inspiration, honey. Not for that.” Someone telling me I’m dying – I’m not inspirational for that. 

The importance of sharing your cancer journey

Nobody wants to see people dying, but there are so many people who’ve died from cancer on YouTube who I used to follow. I’m shocked. I’ve talked to them and it’s painful to see them die. They did mention that they were dying, but nobody wants to see them dying. It’s heartbreaking. I don’t know what to say. I’m clueless right now. [This YouTuber] has inspired so many people by talking about things. 

What I want to do is share my cancer journey on YouTube to find a cure by giving interviews, but also saving people’s lives. I feel like when you save one person’s life, you save the whole human entity. That’s what it is in Islam, because Islam is a peaceful religion. Saving people’s lives makes me happy. If I can help one person, I can help another person. I think it’s truly beautiful to share your story, but also reminds people that they’re not alone. 

Living With Lymphoma

Chemo drugs
Have you lost friends on your cancer journey?

I have lost some friends during this cancer journey. Some people didn’t speak to me. I recently lost a friend. She was there with me with the diagnosis. During that time, she disappeared. Everyone has depression and anxiety. Fair enough. That doesn’t mean that you can’t ask how I am doing. So I have lost friends, which is not good.

Some people are good at saying, “Do you want us to help?” But when I ask them for help, they disappear. So what’s the point of saying these things? I think they just want to say that they were there for me, but they were not there for me. I think that people should stop doing that. You’re not helping. I felt alone in this cancer journey. Let’s be very honest, I feel I’m still alone. 

People don’t understand my cancer, or they think I am cancer-free because there is no more treatment. So many people said to me, “You shouldn’t do chemotherapy.” Like, honey, if I don’t do chemotherapy, I would not be in this world. I would be dead. They said that I didn’t have the option to freeze eggs. This year I learned I’m in permanent postmenopause. My sister said that is infertility. This year is bad news.

Switching hospitals 

When they said, “You won’t be in remission,” my heart broke. After that, I decided to move to another hospital.

Had you finished chemotherapy at that point?

I had already done the cycles. The doctor said [my care] would be lost in transition. She said, “You’re a cancer patient.” I said, “Don’t worry, I’m moving to Christie Hospital and they’re doing my PET/CT scan. It’s just a transition.” I told myself I have to stand up for myself because I was getting mixed signals from MRI Hospital. 

I was thinking about writing a book very soon [about my experience], but I can’t write the hospital name for some reason. A lot of people said I could be sued and God knows why, but I’m very honest. It has to be transparent, otherwise, I can’t write a book because I don’t like to tell the half truth.

What were your results after finishing chemo?

It happened in October 2021. They said I had 50% of cancer cells and 50% had been reduced. I said, “Okay, and what about my spleen?” They said it had reduced but not by a lot. I asked, “Okay, so enlarged meaning, it can’t be ruptured?” Rupturing is life-threatening. You can die from it. [Because of this], I can’t carry heavy stuff. 

I have to be very careful not to rupture it. They said I couldn’t sleep on the right side because it was too heavy. The left side wasn’t heavy, so I had to sleep on the left side. Usually on the right side, I can sleep better because I don’t feel the heart weirdness. My heart felt so weird after chemo. I think because of the drips from the machine and the speed that it goes in [caused it]. Otherwise, I don’t know how I got it. They said one of the chemo drugs can affect your heart. I’m like, that’s not good.

Delaying chemo
Chemo equipment

I went to another hospital because I got mixed signals from the MRI people. They were not being clear. They should never say, “You won’t be in remission.” They were convincing me to do things that I didn’t want. They were saying that there’s no other option. They said, “We don’t want to delay your treatment.” Then why are you talking about pre-surgery, honey? Why are you talking about pre-surgery if I don’t have the option for that? Because they said pre-surgery would take another 2 weeks and they don’t want to delay. 

They gave me my first cycle on Eid day. I said, “Can you at least give me one day off on that day? Because I want to celebrate Eid without any tension. It will ruin not just me. It would ruin my family’s day as well, because they are fasting and they are celebrating Eid. If I do it on Eid day, everyone’s going to go nuts and crazy because they want to know how I am doing. Can you spare one day?” They said, “Okay, we’re going to spare one day, but we’re not going to be able to delay it.” 

I got a bit lucky for the Eid day on the 19th of May. I think the 21st of May 2021, I got chemotherapy, the first cycle and then the second cycle. Then [I had it] in June, July, and August. September was my last cycle, but I landed in the hospital because I was bleeding from the bottom. My family was in Denmark while me and my dad were at home. Then I was in the hospital. I said, “Don’t worry, dad. I’m coming back.” I couldn’t leave him alone at home. My mum was like, “What is going on? Why is she in the hospital?”

Ongoing Cancer Care

Are you currently on cancer treatment? 

No treatment. That’s the dilemma. These are the discussions happening. Basically after chemotherapy it was just active monitoring. So, a PET/CT scan to see, okay 50% [remission]. They said, “At the moment, you don’t need the treatment.” This carried on until 2022 and 2023. 

They still say I do not need it because my cancer is stable. I was like, “What does stable mean?” Everyone thinks ‘cancer is stable’ means it has stopped or that I’m cancer free. This is a myth. People think when you’re done with chemotherapy, you’re free from cancer. But in my case, they said I’m in partial remission. I’m never going to be in remission in my life. I’m like, “Okay, so I’m living with cancer.” Technically, that’s what it means, but how much I’m living? They couldn’t say how much I’m living. That’s why I’m saying they’re not straightforward. They were hesitating to say things. I think they should have sat down and talked about the side effects, which I was being told not to read about. Otherwise I would have known my dental [benefits] and I would have gone to the dentist. I didn’t get the choice to go and talk about it. 

I have a bone marrow biopsy and they want to do a lymph node biopsy. I was praying for no more pain. I don’t want more pain. I’m done. The radiologist said we can’t do it because the spleen was on the surface and behind all the tumors and cancer cells. There were multiple in my stomach. That was weird how that happened. There was a significant amount in my bone marrow. It starts in the bone marrow. 

Cancer is stable does not mean cancer free

Everyone thinks ‘cancer is stable’ means it has stopped or that I’m cancer free. This is a myth.

What stage is your cancer in?

I asked, “Where would you stage me?” They said, “There’s no stage, but we will stage you in stage 4B. Symptoms such as fever, night sweats, itchiness, and weight loss, that comes in B symptoms. X is a bulky disease because the spleen was enlarged. They said, “You’re the youngest patient that I’m treating.” I said, “Well, at least I’m the youngest and not the oldest.”

Are you currently getting scans?

Yes, now I’m having scans. In October 2021, I had my scan initially, then in January 2022, I had another PET/CT scan. They did 2 to be clear what was going on with my neck. They saw some lymph nodes had gathered here in January. They thought that maybe this could be cancer, but they can’t confirm. They want to confirm that with a lymph node biopsy. I said to them, “I don’t want to do that. Do I have to do this?” 

I did have a CT scan after my bone marrow biopsy, just 4 days after. That was on my birthday. Unbelievable. I said, “You guys can not give me at least one week?” They said, “We don’t have much time.” I’m like, that’s my birthday. 

I had to drink 3 liters of water. I remember the whole total. I don’t know how I did it, but it was a disaster. I remember the [injection site] used to bleed. It was not stopping. They put one, two, three bandages on it and it was not stopping. Your platelets get so low. You get bruises, you get bleeding, but it doesn’t stop within 10 or 15 [minutes]. I remember I had a deep cut, it didn’t stop. It was still bleeding for 2 hours and wouldn’t stop.

So right now it’s monitoring. I have another scan this year and it looks like every year I’ll get a scan because of my second opinion. She wants to see where the cancer is. If she didn’t insist or recommend it, I would never know if my spleen was normal or if things were getting reduced. 

Where is your cancer and symptoms today?

There’s no lymph node sitting on my neck area. It’s a bit small. Lymph nodes are sitting in my chest area and they’re active. I don’t know what they’re doing, but I do have night sweats every single day. In the morning when I wake up, I have hair around my neck and itchiness, which is a pain. I’m dealing with it. I have bone pains every single day. I’m feeling numb. 

I’ve had UTI infections 2 times this year. One of them led to sepsis because I had a blood infection, chest infection, and COVID. I’ve had so many in one day. I was hospitalized for 3 days. The CT scan also showed reduced lymph nodes and my spleen being normal, 10.5 cm. That’s better than the 31 centimeter that I had initially. I’m happy that my second opinion pushed [for me]. I was rejected twice from my one consultant I met at Christie Hospital.

I asked her, “Do you want me to go all the way to London for the scan? Because that’s not going to happen.” She said, “No, we’ll do it [here].” After 2 times I tried convincing them to do a PET/CT scan. Otherwise I would never know about my spleen being normal size. I would never know what was going on. They said, “We want to have a picture before we do anything.” 

Are you still considering a stem cell transplant?

The second opinion spoke about it and said, “Have they not discussed it?” I said, “No, the Christie Hospital hasn’t spoken about the stem cell transplant.” When I mentioned it to them, they said, “Okay, yeah, we might do it if you need it, but we’re just waiting.” 

Usually the PET/CT scan only happens when it’s progressing. They won’t do it if it’s stable. Stable doesn’t mean that it’s completely gone, it’s just slowly progressing. So this cancer is slowly progressing. I thought stable meant it stopped, but it doesn’t mean it stopped. So in 3 or 4 months they’re going to see me again for a checkup. 

Active monitoring

They check my neck and armpits for lumps. They check my groin and my stomach area to see if there’s enlargement. This is what I get and also blood tests. They check my IGM. My IGM has been low, which is great. It’s lower than 3.0. I think the IGM I had in 2021 was 24 IGM, and that was high. 

You have fainting episodes. You will feel your body collapsing. You can’t walk. You will feel anemic because your red blood cells, white blood cells, and your platelets will be low. Also plasma cells are abnormal in IGM because that’s the IGM protein. So now I’m being actively monitored. It [feels] a bit slow because right now they’re just seeing me if I need to, but they are planning [a possible] stem cell transplant. 

The second opinion said they want to prolong my quality of life. At my age, we have to consider that. I was like, “Why is the Christie Hospital not considering that?” So I am looking for a good [health care] team. It’s going to take time to find one. I have to see my local [doctors] now because I’ve just moved. I have to tell them how I’m dealing with these things, then maybe I can get into a new hospital. It’s a bit hard. They said not to move because then I have to refer myself to a second opinion, so I am in a bit of a dilemma.

Reflections

Surrounding yourself with positive people 

Share your story, your journey with diaries, or however you want – on YouTube, Instagram, or with your friends. My closest friend was surprised when I was diagnosed with cancer. She was like, “Are you sure?” I had to show her my folder. I think she was shocked and she couldn’t take it. She told her family. Some people won’t be able to take it. I have other friends who were crying. I was like, “Don’t worry, I’ll be fine. I’ll keep you updated.” 

She sees me nearly every month and comes all the way from London to Manchester to visit. I’m so blessed to have these kinds of friends in my life that come to visit me. You need these kinds of friends. Be with friends who would consider supporting you, even telling you [they’ll be there] if you need any help. Be around positive people. Negative people would make you depressed and sad. 

The importance of focusing on yourself

If [doctors] are not telling you the truth and you’re getting answers via other people, you can seek a second opinion. It’s your right.

Seek a second opinion

What I’ve learned about myself is that I also need to focus on myself. I know it’s not easy to focus on yourself, especially with whatever you’re dealing with and what is happening around the world. I understand that some people might have bad things [to say] about you, but you know who you are. You know the truth. Don’t let other people tell you what to do. Think about yourself. Do you accept these things from other people? 

If [doctors] are not telling you the truth and you’re getting answers via other people, you can seek a second opinion. It’s your right. They can’t tell you not to. You can seek opinions 2, 3, and 4. Wherever you want to go, you can seek opinions. You just need to do it. If you feel you can not today, you feel bad, then do it the next day. You may surprise yourself. 

Do you have any advice for those on their cancer journeys?
Komal shares her advice for other cancer patients

You should stand up for yourself if they’re giving you mixed signals like I did. I’ve received mixed signals, and dealt with them not being able to tell the truth. People should be a bit kind as well, because some people might not accept you the way you are. If you’re able to accept yourself and know your value, you would know how to stand up for yourself. 

I think people should learn to accept things and educate themselves about their disease. I’ve seen people who don’t educate themselves and they just put out wrong information. Why are they putting out wrong information? I think you should educate yourself, whether you like it or not. I know it gives you anxiety, but I think the more you learn about your disease, the more you would accept it and you can educate other people about it. 

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Cancer details: Only ~1000-1500 new cases in the US each year
1st Symptoms: Hyperproteinemia
Treatment: Chemotherapy
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Cancers Carboplatin Chemotherapy Metastatic Ovarian PARP Inhibitor Patient Stories Surgery Treatments

Marie’s Stage 4B Metastatic High-Grade Serous Ovarian Cancer Story

Marie’s Stage 4B Metastatic High-Grade Serous Ovarian Cancer Story

As a healthcare communications professional, Marie sat down with numerous cancer patients and shared their stories through writing. She was familiar with cancer symptoms and knew to take them seriously. Then her own cancer symptoms began, such as bleeding and spotting, which led her to make an appointment with her doctor and get an endometrial biopsy and ultrasound. Doctors didn’t find anything in either test.

Later that year, new symptoms arose including fatigue, belly button discharge and a major fall which led her back to the doctor. New tests revealed that Marie had metastatic cancer and another biopsy uncovered a stage 4B ovarian cancer diagnosis. She quickly began chemotherapy and would soon after receive a major surgery. 

Today, Marie shares her cancer story with us, including her experience with chemotherapy side effects, the importance of advocating for yourself, why she chooses to have a positive outlook, her encouragement for people to get genetic testing, and her advice for others on their cancer journeys.   

Marie shares her symptoms and treatment plan for ovarian cancer
  • Name: Marie K.
  • Diagnosis (DX):
  • Staging
    • 4B
  • Symptoms
    • Bleeding and spotting
    • Extreme fatigue
    • Oozing belly button
    • Swollen gland near the groin
  • Age at DX: Early 60s
  • Treatment:

I believe in making lemonade out of lemons. One of my goals now is to, for the rest of my life, advocate and make sure that any opportunities to do genetic testing or screening early to prevent cancer become mainstream.

Marie K.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Symptoms

Tell us about yourself

My name is Marie and I live in Sacramento, California, which is the state capital of California. I’ve been in California for decades, but have only lived up here for a short while. My family’s here, so that’s why I’m here. 

I’m a mom. I have wonderful adult children, and their lives fulfill me and keep me on the move. They’re all in amazing, wonderful careers. Not everybody lives nearby, so it’s a little hard to stay in touch. 

I have been in healthcare communications for decades, so it was very interesting after all those years to be the patient after telling so many patient stories for so long. 

I keep myself busy. I love the outdoors and the beach, and I do a lot of downhill skiing. I have a black lab. He’s not a puppy anymore, but we still call him a puppy, and he keeps me pretty entertained. I like to travel and read. I serve on a number of nonprofit boards and do some nonprofit work, which is really important to me. I keep really busy.

What were your first symptoms? 

In early 2020 during the pandemic, one of my clients was an NCI-designated cancer center here in the Sacramento area. I was producing their synthesis magazine, which comes out twice a year. I wrote stories about people with cancer. I happened to be doing a special issue around colorectal cancer. 

I knew a lot about symptoms for anything that wasn’t okay, and I started getting my own symptoms. I started having spotting and bleeding, which is not okay for a woman of my age. I was like, “Well, I know that’s not a good thing.” 

I reached out to my primary care physician in 2020. She did an endometrial biopsy. First, she did an ultrasound and didn’t find anything specific at that time. In January 2021, she did an endometrial biopsy and still didn’t find anything. I was told that if I continued to have those symptoms, the spotting would be normal because of the biopsy I had. Then I got super busy. 

I look back and I see that I had other symptoms that are symptoms of the cancer I was ultimately diagnosed with, but they’re not obvious symptoms. 

Secondary symptoms

Fast forward to the Fall of 2021. I went on a river rafting trip. We did a 9-day trip down the Colorado River. We’re a mile down in the canyon for 9 days with no reception. The river’s muddy. When you look at the brochures or the website, the river’s always blue, but it was muddy. The river loves to be muddy. It wasn’t good for the rest of us, but basically, we were bathing and washing our hair in muddy water. 

Because there was a heat warning down there, it was 115 degrees, we spent a lot of time in the water. You wanted to be wet all the time. Fast forward, I get back from that trip and I’m pretty tired. I’m pretty worn out, and I just assume that was from every night, you set up camp and every morning you pack it up and head back down the river. I assumed I was tired from sleeping on the sand for 9 days. But I was still tired, so I said to my son, “If I’m still tired next weekend, I’m going to go see a doctor because I’m really tired.” 

Marie's dog alerted her to her belly button oozing

Meanwhile, my black lab was a puppy at the time. He’s from a line of hunting dogs. He’s always sniffing everything, he’s always sniffing me. If you come home from anywhere, he checks you out. But he kept burying his nose in my belly and I’m like, “What is he doing?” I hadn’t been showering a lot. It’s the pandemic and I didn’t feel well. I finally lift up my shirt. I’m like, “Do I have food on me or something?” This is probably TMI, but I discovered that my belly button was oozing, which is pretty gross. I immediately Googled it. I’m like, “Well, I better see a doctor.” 

Scheduling a doctor’s appointment

I was super fortunate. This is now the end of September 2021. I get in to see a doctor and it’s during the pandemic. Believe it or not, I found an opening and told the doctor that I’d been on the river, so I thought maybe I had an infection. The doctor prescribed me an antibiotic but said if nothing changed in 48 hours, please come back. 

Nothing changes in 48 hours and then I find what feels like a swollen gland in my groin, coincidentally. I have a follow-up appointment for the following Tuesday. Now we’re getting into the first week of October.

That Monday, I was walking my dog again, and I was like, “I just don’t feel good. I really shouldn’t be out walking him,” because he’s a lively, strong puppy. Before I knew it, I hit the ground. I don’t know what happened if I tripped on him, but I hit the ground so hard that it knocked the wind out of me. I went face-plant on the cement. Fortunately, a neighbor saw he came running out. He helped me. I eventually made my way back home. I wasn’t that far from home and I had my doctor’s appointment the next day, so I’m like, perfect. 

My wrist hurts, my lungs, I just hurt really bad. I’m in a lot of pain. I see the doctor and since nothing’s changed, she orders an ultrasound of my pelvic and stomach area. Because I had so much pain in my chest, she ordered an x-ray of my chest also. I get in right away to do that. That was on a Tuesday. 

Diagnosis

Receiving a cancer diagnosis 

On Thursday, the classic cliche, I’m driving along, I get a call from the doctor and she asks if I’m close to home or if I can pull over. I pull over and she says, “I hate to tell you this on the phone, but you have metastatic cancer. It’s in your ovaries, your lungs, your omentum,” which is your extra stomach. I’m in so much pain, all I say is, “Yeah, but did I break my chest or something?” She said, “No, we don’t see any breaks in your chest or anything.” 

All I cared about, this is terrible, is just the pain I was in. That’s the first week of October. She gets me in right away to see this wonderful gynecological oncologic surgeon at my hospital system. I go see her and she’s like, “Everybody likes to assume that things are ovarian right away, but we need to find out the origin of the cancer first because it affects how we treat you. I’m also concerned about all the falls you’ve taken and the fact that your cancer has metastasized. I’d like you to do a skeletal scan and a brain scan and make sure you don’t have Mets in your brain and your bones.” I do that and the good news is there was no Mets in my brain or my bones.

»MORE: Reacting to a Cancer Diagnosis

But the tech said to my doctor, “Does she know that she has 4 fractured ribs on her left side, 6 fractured ribs on her right side, and a fractured sternum?” I had taken a fall before my river trip walking my puppy and I went on the trip anyway because it’s really expensive to cancel. I didn’t get to paddle a lot on the trip, so those ribs were a little further along in healing, but that was all I cared about. 

I think most people would probably be reeling from a metastatic cancer diagnosis, but I was just in so much pain. Finally, I got some stronger meds and walked around and laid around with a pillow for a couple of weeks and healed. I had time to lay there and start processing the fact that I had this cancer diagnosis. 

What was your official diagnosis? 

I had to wait 3 weeks because it was the pandemic. It took me that long to get in to do a biopsy to confirm the origin of the cancer. The biopsy was at the end of October. By the end of October, it was confirmed that it was metastatic ovarian cancer stage 4B, which is pretty much the worst diagnosis that you can get.

Processing a cancer diagnosis

I have the advantage that, for decades I’ve been writing stories about and meeting cancer patients. I knew a lot about healthcare and the healthcare system. I knew a lot about the drugs that are out there for cancer and how we treat cancer. I also knew that when you read those prognosis factors on websites, they’re based on some data and everybody’s cancer journey is different. 

From an intellectual perspective, I was like, “Okay, I can do this. I’ve watched all these other amazing people and told their stories. I can do this.” I knew there were great drugs out there and great doctors. Intellectually I was like, “I’m going to get through this.” Emotionally, I wouldn’t let myself go there too often, but I did have some crying sessions, mostly because I was not ready to leave my adult children. It broke my heart to think about that. 

It was confirmed that it was metastatic ovarian cancer stage 4B, which is pretty much the worst diagnosis that you can get.

Doctors confirmed Marie had metastatic ovarian cancer

I was the one who wrote the stories about, “I was able to be there for one more wedding or one more grandchild.” I still tear up. I cannot talk about that part without tearing up. That was the emotional part, was the fact that I wouldn’t be able to see my kids continue to become the beautiful people that they are. That was hard. 

Then, of course, we were on the phone every day trying to navigate how I was going to put together my care. Because again, it was 2021, but the pandemic was still very much affecting the healthcare system, access to doctors, access to the OR, and all of those things. I was in the middle of an insurance change, believe it or not. I had a lot going on to keep me busy.

Chemotherapy

Starting chemotherapy 

This wonderful doctor, this oncologist that I went in to see, helped me expedite everything. She wanted me to get into the chair as soon as possible. They fast-forwarded my training. You do a chemo training. I got my own personal chemo training. I was in the chair by November 6th. Because the cancer center had been my client, I was working on getting into the cancer center, but I went where I could get in the quickest. 

I have a really good friend from where I used to live. He’s an oncological surgeon. I was so sad that I was waiting so long for the biopsy and then I was nervous about having a pretty big surgery in between my infusions. He just said, “Well, first of all, don’t panic that the cancer is in there. It doesn’t change that much. Don’t let the time stress you out.” But I was in the chair pretty quickly. He also did a bunch of his own research, which was in agreement with the doctor’s recommendation. Three infusions every 3 weeks of carboplatin and paclitaxel, which is the standard of care. It’s in the NCCN guidelines for ovarian cancer. 

»MORE: Chemotherapy FAQs & Patient Stories

How did your surgery go?

Then I had my major surgery within a few weeks of that third infusion, and then 3 more infusions, which took me into April of the next year. I had my big surgery in January. I ended up getting my surgery at the cancer center because two things happened. One is this wonderful oncologist left and I was so sad. I had also been doing a lot of research and found out that Dr. Brooks at the cancer center was renowned in terms of ovarian cancer. Instead of trying to find a surgeon within the hospital system I was at, I chose to have my surgery at the cancer center. 

The surgery was good news. It was a high-grade serous ovarian cancer, which means it responds really well to chemo. When they did the surgery, what’s usually a 7 or 8-hour surgery, was only 3 hours. It had not metastasized to my other organs. It had worked so well that they weren’t even able to get enough of my tumor to type the tumor in pathology. Since I had such a good response, I did say, “Does that mean I don’t have to do 3 more infusions?” They’re like, “No, it doesn’t work that way.”

Did you have any side effects from chemotherapy? 
Marie lost her hair due to chemo

That’s probably one of the hardest visually dramatic parts of chemo care is losing your hair.

The truth of the matter is the infusions get harder because the side effects get harder. My fifth infusion was delayed by a week because my white blood cell count had dropped too much. I had the symptoms that you hear about. I lost all my hair. In 2022, I was completely bald. I did eventually shave my head so I didn’t have to deal with that. I think that’s probably one of the hardest visually dramatic parts of chemo care is losing your hair. It was really tough. 

What are some tips you have for someone on chemotherapy? 

It’s something I really think about a lot and I’m doing some advocacy work around this topic. For these drugs to work well, you have to have the right 360 care. You have to be able to eat right, sleep, be safe, rest, and a lot of other things so that you can survive the treatment. 

I was fortunate that I had this amazing village. Everybody showed up. Even my kids were like, “Who are all these people?” It was a beautiful thing. I cried every day because of all the acts of kindness. I’m not kidding. Beautiful blankets that people made me would show up, wonderful food, and the most gorgeous flower arrangements and cards. Every day, there was something. I was so touched. 

The 360 care was so important to managing the side effects. You’ve got to be able to eat. They’ve come a long way in giving chemo. Decades ago, I launched a monoclonal antibody for breast cancer. It was one of the first, and that was in the late 90s. Chemo was really hard on women. They’ve come a long way. 

For these drugs to work well, you have to have the right 360 care. You have to be able to eat right, sleep, be safe, rest, and a lot of other things so that you can survive the treatment.

The week you get your infusion, you’re given steroids, antihistamines, anti-nausea, and all kinds of prophylactic care. You stay on those meds that first week until you get through the worst part of the chemo. I always knew that chemo week would be a really bad week. Well, the first few days would be great. You were high on the steroids, so I couldn’t sleep. People clean their houses, do projects, and then you crash and burn. Your second week is really hard, in your third week you’re feeling good, and then you start all over again. 

Was there anything that helped mitigate your side effects? 
Marie with her medications

It was really critical to eat right and to follow the regimen that they’d set forward. Lots of sleep, which was weird for me because I was never a napper. I’ve never been the kind of person that can lie down and sleep. But this fatigue is not the same as being tired. It’s a very physical type of tiredness where you have no choice. You can feel the energy drain out of your body from your head to your toes and you have to lie down. 

I did a lot of resting and sleeping, which was not very normal for me. I watched more TV during that time than I watched in my lifetime. I read a lot too. I had friends send me great books, their favorite books. I read some autobiographies about people who had cancer. I continue to do nonprofit work, so I try to have some structure in my life. 

»MORE: Cancer Treatment Side Effects

Quality of Life

What cancer treatment are you on today?
Marie after her last infusion

Today, I’m on an oral chemo. It’s a PARP inhibitor and it targets the BRCA2 mutation. I’ll be on it for 2 years, so I’ve got about 10 months left, or maybe 9 months. It has side effects, but I’ve gotten used to most of the side effects. There are things I have to do every day and I have to take care of myself, which is hard. I can’t do a lot of things that I used to do. 

The good news is, when I’m finished with my 2 years, they take you off because they believe that the side effects start to outweigh the benefits if you’re on it for too long. But they believe that it keeps working. They believe, with ovarian cancer, that they can talk about remission, which they weren’t able to do before. My next big milestone is June 24th, and it will be really exciting to not be on any medication anymore. It’s been a long time.

How often do you receive scans and tests?

My oncologist is really nice about that. She leaves it up to me. Every time you get a scan, you expose your body to radiation so we don’t do a lot of scanning. We did scanning in the beginning. The first year you scan – I’m forgetting – I think you scan quarterly. Then we went down and then we stopped. 

Every quarter, I do my lab tests and there’s a test called a CA-125, which is a measurement. It’s not a predictor, but a measurement if you have ovarian cancer. I think it measures other cancers too. Your CA-125 tells you if the cancer is returning. When I was diagnosed, my CA-125 was 477 and it’s supposed to be under 35. Today, it stays under 35. It’s quite low, but since it was a predictor for me, they used that. We keep an eye on that quarterly. 

If I’m feeling nervous about things, which I do. Every little bump now, I’m like, “Oh, it’s back.” The thing about the scans is it has to be far along for the scans to pick it up. The lab tests are actually better in trying to pick up the cancer before it becomes big enough that it can be picked up by a scan.

Did you stop working?

I left my work right around getting diagnosed, and I don’t know how people continue to work. I don’t know if that’s a good idea. Some people don’t have a choice, but I don’t know how people work while they’re getting chemo. They’d have to have a really understanding employer.

Genetic Testing

Marie was BRCA2+
Did you get genetic testing?

In the middle of that, I did find out that I am BRCA2 positive. They put off the genetic testing until you’re through care. I said, “No, I want to know now.” I was quite angry about that because I was like, this is crazy that I had to wait until I’m in my early 60s to find out that I’m BRCA2 positive. We could have figured out a long time ago if I was positive that it was likely ovarian cancer because BRCA2 is an indicator for ovarian, melanoma, prostate, colon, breast, and they think pancreatic cancer.

Advocating for preventative care

I believe in making lemonade out of lemons. One of my goals now is to, for the rest of my life, advocate and make sure that any opportunities to do genetic testing or screening early to prevent cancer become mainstream. We sequenced the human genome decades ago and there are now lots of genetic tests out there. They just haven’t made it mainstream. 

If you check guidelines for preventive care for women’s health, you don’t see on there, get genetic testing. If you go to the NCCN guidelines, it’s not there. Men don’t get told to go do their genetic testing to find out if they’re susceptible to prostate cancer. It doesn’t happen. 

What I would tell people is that your healthcare provider within that system has somebody who is a geneticist, and it’s their job to do the genetic testing. There’s a lot of genetic testing that’s done for other types of care. One of the reasons it’s not mainstream is because, when you find out you have something, how do you take care of it? Sometimes you find out you have something and there is no care for it. But there are so many other types of diseases that you can find out about through genetic testing that outweigh the others. 

Are there options for genetic testing outside of getting it through a healthcare provider?

I have a lot of friends and family now who are all getting their genetic testing done, and it’s really not that expensive. If for some reason your healthcare provider won’t pay for it, it’s only $250, in general. It’s a spit test so they mail the whole kit to your house. You don’t even have to go anywhere. You do it at your house and you mail it back. 

Are there benefits to seeing a geneticist? 
Marie promotes people getting genetic testing

Be proactive and ask to get your genetic testing.

It really is wonderful to do it with a geneticist because then they walk you through the report you get back. I have a very detailed report, and they even wrote a family letter for me to send out to my family. With something like a BRCA mutation, people only usually associate that with breast cancer, but it’s an indicator of prostate cancer. 

The irony is that both my mother and my brother had cancer, and their healthcare system never had them do genetic testing. If they would have done that, we could have known then that we had this mutation in our family

I really recommend that people start asking questions. It really fills my heart when I have friends let me know that they’ve done their genetic testing. One of my dear friends who was part of my village, her family uncovered the BRCA2 mutation. Her sister has since been diagnosed with ovarian cancer, so her daughters are all over it now. I really encourage women and men to be proactive. Not just women, but men too. Be proactive and ask to get your genetic testing.

Reflections

What advice do you have for someone on their own cancer journey?

First and foremost, you have to be your own advocate. I know people talk about that all the time, but you really need to get engaged in your healthcare. It’s unfortunate if you haven’t done that already. Now you’re facing this diagnosis and now you need to. 

This is the time you need to accept help from the people around you. I really recommend when you’re seeing your doctors, always bring somebody with you or if it’s on the phone, have somebody there because it’s so much to take in and it’s really helpful if somebody else is taking notes. I never went to an appointment without somebody else there. We would compare notes and then I would forget something but my friend or daughter or whoever would remember what the doctor had said.

The importance of asking questions

Don’t just accept what you’ve been told if you don’t understand it. It’s okay if you don’t understand what the doctor is telling you. This is complicated stuff. Our doctors, this is what they do every day so they understand it. Sometimes they forget to slow down for you. As somebody whose job it was to translate science and healthcare so the layperson could understand it, it was still hard for me to understand. Don’t be afraid to ask questions. 

If you’re not comfortable with your healthcare provider and you feel like you need somebody who’s going to listen to you more, it’s okay to seek that care out and know how you’re being treated. Know what the options are. I have run into people who didn’t even know what they were being treated with, and I think you should know what you’re being treated with, what your options are, what are the side effects, and what are the long-term impacts. It’s okay to ask all those questions. I would say, take the time and get engaged. This is life and death stuff. You want to get engaged and you want to know what’s going on so that you can navigate through to the other side.

»MORE: How To Be A Cancer Patient Advocate 

Marie encourages people to ask their doctors questions if they don't understand
Having a positive outlook 

I’ll have people say to me, well, you had such a positive attitude. That’s why you did so well because you had such a positive attitude. With some exceptions, I think there’s truth to that. Every cancer is different – when and where you get diagnosed, the health of your own body, and the resources you have at your disposal, all impact your recovery. 

Don’t let people tell you all those negative stories. Don’t read the general data about diagnosis and prognosis because it’s general data. Write your own story and try to stay positive. Let your friends and family help you. People want to help you, and you need to let them, and they will be part of your hope because everybody is rooting for you. 

I do believe that depending on your cancer, the cancer doctors know a lot, they know how to treat you, and they’re going to do their best to help you. That combined with hope and love can sustain you. There is an end. You’ll hear stories – lots of people have second and third cancers, which is hard. But you’re going to get through this first one. So every day, look around you and be thankful for something that day.

Adjusting to life with cancer

When you get your cancer diagnosis, as much energy as you put into finding the doctor and figuring out your medical care, put just as much energy into, what is your life going to look like for the next year? What is that support system going to look like? Who’s going to be around to help me go to appointments, make sure I’m being fed, and make sure there’s groceries in the house? Think about your activities of daily living and how you’re going to get through those. I think it will have a lot of impact on you having a healthy, positive outcome.

Thank you for sharing your story, Marie!

One of my goals now is to, for the rest of my life, advocate and make sure that any opportunities to do genetic testing or screening early to prevent cancer become mainstream.

Marie does advocacy work to emphasize cancer prevention

It’s part of my making lemonade out of lemons. I want to share my story, I want to work on making sure that genetic testing is accessible, and I want to make sure that we help people who have less resources figure out how to navigate and have a positive outcome. Backing up to that is prevention. Getting more of these cancers diagnosed early, and that’s the work I do through my advocacy work through the Cancer Action Network.

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Categories
ABVD Bone marrow transplant Chemotherapy Hodgkin Lymphoma Patient Stories Treatments

Madeleine’s Stage 2 Hodgkin’s Lymphoma Story

Madeleine’s Stage 2 Hodgkin’s Lymphoma Story

Madeleine was in her early 20s when she first noticed symptoms such as itching that kept her up at night. She visited the dermatologist several times who couldn’t pinpoint her issues and gave anxiety as a possible explanation for her itching. A year later, she visited her primary care doctor after developing a bad cough and lump on her neck. After multiple scans, Madeleine was diagnosed with stage 2 Hodgkin’s lymphoma at 22 years old.

Her oncologist was hopeful about treating her with ABVD chemo, but when the ABVD proved minimally responsive, she was given a 5-year life expectancy. This led Madeleine to change doctors and begin additional treatments. Other treatments also showed little progress, but salvage chemotherapy turned things around and opened the door for her to have a bone marrow transplant

Today, she is cancer-free and shares her journey with us including her experience with different types of cancer treatments, why she encourages championing your mental health, how she dealt with recurrence, and her advice to others on their own cancer journeys.


Maddie post-cancer

My story is still ongoing. I guess you could say the curse of cancer is the fact that it’s always going to be in the back of my mind, but the further away you are from that moment of actually getting the declaration of remission, the easier it gets.

Madeleine S.

Thank you to Pfizer for its support of our patient education program! The Patient Story retains full editorial control over all content.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Table of Contents
  1. Symptoms & Diagnosis
  2. Chemotherapy
  3. Recurrence
  4. Switching Treatment
  5. Clinical Trial
  6. Bone Marrow Transplant
  7. Quality of Life
  8. Reflections

Symptoms & Diagnosis

Tell us about yourself

I am Maddie. I am 30 years old. I am a senior at the University of Maryland, I’m a history major, and I also work full-time as an accountant.

I used to be a competitive figure skater, so I do like doing that on the side. Not competitively anymore, but whenever I have the time. I’m a big fan of theater and singing. Before I was a history major, I was a theater major. That’s an active hobby of mine. I like watching movies. My friends have told me that I’m a walking IMDb.

Maddie skating
Maddie is a history major
A hobby of Maddie's is watching movies
What were your first symptoms? 

Everything started a year before I was diagnosed. I had insanely itchy skin on my feet, my legs, and my torso. For a year, I went from dermatologist to dermatologist trying to figure out what the heck was going on because it was getting to the point where I was breaking skin in the middle of the night. 

That was when we knew that we were dealing with some kind of cancer.

None of the specialists could figure out what exactly was wrong. They said it was everything from eczema to it’s just in your head, it’s anxiety. It was incredibly frustrating because, after a year of no sleep, I was starting to accept the fact that this was just what I had to deal with for the rest of my life. 

Maddie shares her initial cancer symptoms

In April 2015, I scheduled an appointment with my primary care doctor because I had a really bad cough. The day before that appointment, I happened to be running my hand down my neck and I noticed a lump on the side, and I didn’t really think much of it.

I thought it was probably just a swollen lymph node from an infection. That would explain the coughing. I went into the appointment and that was in the back of my mind. At the very end of the appointment, I casually brought it up and my doctor said, “Yeah, that’s not normal.” Immediately she scheduled an ultrasound appointment and the ultrasound led to an MRI. The MRI led to a PET scan, and that was when we knew that we were dealing with some kind of cancer. 

What did the scans show?

I got that call 2 weeks into a new job that I had just started. That was rough to take because I finally felt like things were getting back on track in my life and I had plans to go back to school that fall. But everything had to go on hold. 

Did you suspect that you had cancer?

No, not at all. I don’t think I started thinking about the worst-case scenario until a family member of mine said, “My daughter had something similar.” She was worried that it was going to be a type of lymphoma, but it turned out not to be. That was the only time prior to getting my diagnosis that cancer was even on the radar at all. 

I thought the odds of it were probably very slim. Come to find out, Hodgkin’s lymphoma is actually pretty common between ages 20 to 25, and I was 22 when I was diagnosed. 

How did you process your diagnosis?
Maddie receiving chemo

That’s when I put two and two together, that the itchiness was actually related to the cancer because it never came back after that day. It was really frustrating to know that it could have been caught a year before.

I knew I was dealing with cancer before actually finding out that it was Hodgkin’s. And that was the hardest moment. Finding out what exactly it was actually a little uplifting because I knew what I was dealing with and we had a plan to go forward. 

The oncologist that I had at the time said something along the lines of, “Out of all the cancers to have, this is one of the more easily treatable ones,” which no oncologist should ever say. I think because there are so many variables, everyone’s cancer is different. Regardless of what the diagnosis is, anything could happen and my case is a perfect example of that. I didn’t last with that oncologist for very long.

I was still very upset getting the news that I had cancer. No 22-year-old really wants to hear that kind of news. That’s supposed to be when you’re in your prime. I was upset in my appointment, and my oncologist said, “You have to be strong. You have to buck up and stop crying, you’re going to get through this. It’s just 1 chemotherapy and then you’re done.” I’m like, okay, cool. 

»MORE: Reacting to a Cancer Diagnosis

Chemotherapy

What were the first steps in your cancer treatment?

It was a bit of a rush getting into chemo, because before I knew it, I was doing a bone marrow transplant, a bone marrow biopsy, I was getting my port put in, and all of this was happening all at once. It was really overwhelming. 

It wasn’t until that first infusion that I actually slept through the night for the first time in over a year. That’s when I put two and two together, that the itchiness was actually related to the cancer because it never came back after that day. It was really frustrating to know that it could have been caught a year before.

How did your body respond to chemotherapy? 

I’m sorry to say, but it looks like you have less than a 5-year life expectancy.

Maddie completing ABVD chemo

After doing ABVD chemo, at the end of the year, my oncologist gave me the impression that I was basically in the clear and I could go back to normal life. I was ready to do that. I celebrated with friends. I went back to work because I had taken disability halfway through chemo. I thought it was just a really bad chapter in my life. I’m going to move on. It didn’t even take over a year so it’s okay. 

Then I found out that it didn’t respond perfectly well to the ABVD. It responded, but not enough. After finding that out, the oncologist that I had at the time said, “I’m sorry to say, but it looks like you have less than a 5-year life expectancy. We’re looking at having to do ICE chemo, we have to do a transplant, and your odds aren’t really looking too good.” She recommended that I resign from my job that I had just resumed. At that point, I was like, “I need a second opinion here. I don’t feel comfortable with this.”

Were you originally given options for treatment? 
Maddie was only given ABVD as an option for treatment

There weren’t really any options. It was just the standard protocol at that time, and this was in 2015. I don’t know what it is now, but the standard protocol was ABVD for 6 months and I can’t remember how frequently I went in for infusions. I think it was every other week. I did that diligently and made every appointment on time. My mom accompanied me to every single one of those appointments. 

So, no, there wasn’t really any wavering. I didn’t even ask any questions about other options because I figured that was the best case for me. Especially being told that it’s so easily treatable. So why question it if I’m getting the best care?

Did you have any side effects from chemotherapy? 

Oh, yeah. There’s the usual hair thinning and the nausea, but the worst side effect for ABVD was by far mouth sores. It just really aggravated my mouth to the point where I had to eat ice chips while I was getting the infusion, which was so miserable. I had no appetite at all, so I didn’t really want to eat. All I wanted to do was sleep.

Did anything else help with the mouth sores?
Maddie ate ice chips to help with mouth sores

Not really. It was just the ice chips. That was all they could really offer. But out of most other patients who have had chemotherapy, they thought I tolerated it really well and I think I did. 

A lot of my friends, I could have fooled easily with how I was going about my day-to-day. I felt exhausted, all I wanted to do was sleep and I was depressed given everything that had been blown up in my face over the course of a few months. But I tried to give the outward appearance that everything was fine. I think I did a pretty good job of that for a while. 

»MORE: Chemotherapy FAQs & Patient Stories

Recurrence

How soon after your treatment did you get scans? 

We originally planned on having the last PET scan in January, which was a couple of weeks after my last infusion of ABVD. When that came back, there was a little tiny residue that was in my chest so I couldn’t feel lumps or anything. 

Maddie underwent cancer recurrence

They said that there was a little tiny speck in the middle of my chest, and I was given an option. We can assume that this is a recurrence, or there’s the possibility that it’s just scar tissue. If that’s the case, then we can just do a repeat PET scan and see what happens. I went with that option thinking it was behind me still. When that repeat PET scan came back, it came back aggressive. 

How did you react to having cancer recurrence? 

At the time, it was just a complete shock. I didn’t really know what to make of the future anymore. I was distressed, but I look back on it and actually, there’s a lot of pent-up anger around that because it’s like there are so many things that could have been done differently. There’s the possibility that it could have been avoided altogether if I had gotten diagnosed sooner or if I had actually just treated it as a recurrence. Maybe my cancer journey would have been shortened by a half. 

But at the time, I was in a lot of distress, and the only thing I could think of at the time was, “I’m not going to just give up.” I wanted to get a second opinion. I wanted to find out if there were other options besides ICE chemo because I was told, that out of all the chemo options out there, it’s one of the more toxic ones. At the time, I was only 23 and I still had so many things I wanted to do with my life. One of them was to eventually have a family of my own and to be able to have a kid of my own. 

Did you discuss preserving fertility with your doctor?
Maddie wearing a curly wig

I don’t really remember what the conversations were like with my oncologist, but I do remember having the conversations with my family. My immediate family was very supportive of whatever I wanted to do in terms of preserving whatever I could after having 6 months of chemo. 

Then there were some family members and also friends of mine who had just learned about the incident. They weren’t as supportive. They were like, “This is God’s plan. There are so many kids out there who need to be adopted.” I know that, and my original dream was to have my own kid plus adopt. But to have cancer rob me of one more thing, I didn’t really want to let that stand. So I went through the fertility treatment prior to doing the next chemotherapy. 

Do you feel your medical team encouraged you to preserve fertility? 

When I asked for a second opinion, they sent me directly to Johns Hopkins and I saw one of the best specialists specifically for lymphomas there. He strongly recommended that if I want to have my kid, don’t jeopardize it. I should definitely consider it. Especially because I was looking at potentially doing a transplant at that time if I ever made it to remission. He said, “If you do a transplant, the odds of you having your own kid without any kind of assistance is pretty much impossible.” 

[With my first oncologist], I do remember it being brought up, but it was kind of dismissed because they were like, “You’re young and a lot of people bounce back.” At the time, it wasn’t covered under any kind of insurance. It would have been paid completely out of pocket and I didn’t have the funds for it. Neither did my family. So I was like, I’ll take the risk. 

It wasn’t until afterward when I was facing a transplant, I was like, this is something that I really want and I want to invest in. I held a GoFundMe and the people who were supportive of me supported it. 

What did you discover after receiving a second opinion?
Maddie and friends wearing sunglasses

When I asked for a second opinion, they sent me to Johns Hopkins. That was where I found out there are a ton of options. There are clinical trials, there’s immunotherapy that’s just come out for Hodgkin’s lymphoma. Besides that, there were other chemo options out there that weren’t as toxic as ICE chemo. 

He said, “Since you’re familiar with chemotherapies, brentuximab has some of the better results and it’s not as toxic.” He recommended doing that. After discussing it in thorough detail with him, and I had my parents with me in the room, we all decided that that was the better course. When I went back to my main oncologist, I immediately sought a different one. The second oncologist that I went with ended up being the one who saved my life ultimately. 

Switching Treatment

How did your body respond to brentuximab? 

I did brentuximab after doing all the fertility treatment and all it really did was stabilize the cancer. It didn’t do a whole lot, unfortunately. When it became apparent after a couple of months of it not doing anything, it was like, okay, we need to look at another option.

Exploring clinical trials

That was when my new oncologist said there were some clinical trials going on at NIH. He assembled a team of doctors from both Johns Hopkins and NIH to find out what everyone’s opinions were on the situation. He sent me over to NIH to get every scan and test done under the sun. Then I finally met with the team over there, and I had never felt like a lab rat more in my life because they were all talking about statistics and everything. It was a lot to take in. 

Maddie was sent to NIH
Maddie received several scans at NIH

They presented all these different options. They presented the clinical trial which was the CAR-T cell project, but it was in its beta phase so it had only just come out with recent results. They said, “Before we even think about doing that, there’s one more option that we want you to try, which is an immunotherapy called nivolumab.” I said, “Okay, sure, let’s do that.” It was basically like chemotherapy, but again, less toxic. I went with that and that one almost killed me actually.

Describe your experience with nivolumab
Maddie and her mom

I went in for my first infusion thinking nothing of it. It’s like any other infusion that I’ve had. I was seeing the same crew of nurses that I’d seen for a year now, and I remember them hooking it up and maybe 2 minutes into the infusion, I couldn’t breathe. I felt like something in my chest was cut off. I was really struggling to take another breath and immediately hit the emergency button. 

I was in a panic and they said, “It sometimes happens. Maybe it’s because we were putting the drugs into your system too quickly.” They slowed it down in the next infusion and it worked out a little easier for me. I still had a little bit of chest pain, but it was something I could put up with. I figured it was going to do its job. Why not just put up with it?

Is breathlessness a common side effect of nivolumab?

For that drug in particular, it’s not exactly a common side effect to have. I think it was just an error with how quickly it was being administered to me. But I mean, after having an incident like that, that kind of changes your perspective on future infusions. You’re very, very cautious going forward after that. Beforehand I had really no major issues. I tolerated the treatments rather well, so this took me by surprise a bit.

It honestly had no benefit at all. It actually gave me lasting problems to this day. I’ve had thyroid problems ever since. Prior to that drug, I never had any issues. It was actually very upsetting being told that I would have to be on medication for life when I didn’t have to deal with that beforehand. Mind you, prior to cancer, I was healthy, I was active, so this was very upsetting. 

That’s when I started to see a decline in my mental health because I was starting to feel very hopeless. It was after the nivolumab that I was told, “We’re looking at something that’s incurable here,” which was very hard to take.

They said that the clinical trial was still an option, but because of how early on in the phase it was, it basically would just buy me time. I was like, okay, well, it’s better than nothing. 

Maddie often traveled between chemo
Did you have a cancer support group?

I had an amazing support group that I had been attending and they all lifted me up. When I was told that news that we’re basically facing something that’s incurable, the first thing that they all wanted to do was take me out and treat me to dinner. We all partied up. 

Maddie had support throughout her cancer journey
Maddie parasailing
Maddie had supportive friends and family

They also asked if there was anything that I would want to do before the end and what would it be. At that time, I was like, “All I want to do right now is go and see family that I haven’t seen in a decade in France.” They set up my second GoFundMe, which I didn’t really feel comfortable with, but they set it up so that I would be able to go and see my family. The intention was basically to say goodbye to them. 

Clinical Trial

Preparing to go on a clinical trial

With that in place, I started preparing for the clinical trial at NIH. I had done all the tests and everything, but my lab work came back and showed that I had increased levels of estrogen despite all the chemo that I had undergone. They said, “Because your estrogen levels are too high, you’re technically not able to go through with the clinical trial just yet. We have to put you on hormone therapy. In the meantime, while you’re doing the hormone therapy, we’re going to have you go on salvage chemotherapy,” which was GVD. 

Maddie prepared to go on a clinical trial
Salvage chemo leads to a breakthrough 

It was just supposed to hold me over until my levels were at the right place so that I could do the clinical trial. However, 2 months into doing the salvage chemo, which was not supposed to have really any effect, I started bouncing back. I noticed a significant decrease in the lumps that had recently formed after the nivolumab, and no one saw it coming. It was like, okay, clinical trial is no longer at the forefront. We’re looking at another opportunity for a bone marrow transplant.

I was thrilled and ecstatic. I saw hope in the future. But when having the discussion about the transplant, given everything that had happened, my team of doctors broke it up into thirds. “There’s a third possibility that you accept the transplant and it goes great and you’re in remission. Awesome. There’s a third chance that there are complications during the transplant and cancer doesn’t go away in the end and we have to take it from there. There’s also the potential third percentage that you don’t even make it at all. That you don’t respond at all to the transplant.” 

Two months into doing the salvage chemo, which was not supposed to have really any effect, I started bouncing back.

Maddie started bouncing back after salvage chemo
Delaying the transplant

After having that conversation, I was still determined to go to France and see family, because nothing is guaranteed. At the time, when we had made travel plans, I was reaching a state of temporary remission, and my doctor was like, “You should really think about dropping your plans and going into transplant.” I was like, “Yes, I have every intention of doing that. But my mental health right now is at an all-time low. I am under the impression that you have to go forward with a positive outlook here.”

I knew that if there was the potential that I wasn’t going to pull through and I wasn’t going to get into remission after the transplant, I would regret not being able to see my family. Because at that point, I probably would have been too weak to even do that. After talking to my doctor for several minutes, I was like, “Okay, this is what I want.” That was the first time in a while that I really called the shots. Come to look back on it, I actually regret doing it because when I came back from my travels, there was a regrowth happening. 

Maddie traveled to France
Despite her doctor saying she should have a transplant, Maddie traveled
Her friends setup a GoFundMe so she could see family in France
What treatment options did you have at this point? 

At first, my oncologist was sort of optimistic. He said, “You know, the GVD worked before. Let’s have you go back on it for another 2 infusions and see what happens.” It became apparent that I was no longer responding to it so I was right back where I was at the start having to face a decision. It was the final decision at that point. Either I’m going to go into the clinical trial or I’m going to do the last option available to me, which was the chemotherapy, which my first oncologist was the one who recommended from the start.

Maddie felt strongly she had to do ICE chemo

I had a really strong gut feeling that doing chemo was the right thing to do.

I remember having that conversation with my oncologist over the phone. Surprisingly, I wasn’t really upset anymore. I think it was because I had actually taken the initiative of going to see family and doing what I wanted to do in my life that made me content with whatever outcome was going to happen. 

I asked my oncologist, “Can I have a day to think about which option I want to go with?” Because both had major risks involved. He said okay. The next day, I basically spent the entire time contemplating and thinking and weighing the pros and cons and deciding what I felt most comfortable with. 

When my oncologist finally called over the phone, I just had a very, very strong gut feeling. I can’t even really describe it. I had a really strong gut feeling that doing chemo was the right thing to do. When I told him that specifically, he said, “If you have a good feeling about it, then I’m all for it.” So we went with the chemotherapy and that ended up actually being the miracle.

Bone Marrow Transplant

Preparing to go on ICE chemotherapy 
Maddie opted for a bone marrow transplant

ICE was a whole different game because, unlike the previous infusions where I just went to my doctor’s office and sat in the infusion center for a couple of hours, I actually had to be hospitalized this time. That was the first time I ever had to be hospitalized through the whole cancer situation. It was right after the holidays, too. There was trouble trying to book things because everyone didn’t want to be in the hospital over the holidays. Finding a bed was rather difficult, but they managed to squeeze me in at the start of January. 

Describe your side effects on ICE chemotherapy
Maddie with a buzzed haircut

The side effects were pretty brutal. I was very nauseous and very fatigued. I know I had friends visit me in the hospital, but my recollection of it is very limited. When I was looking back at photos, I found a photo of a friend who had come by, and I’m like, I don’t even remember them swinging by at all. That’s how completely out of it I was. 

But at the end of every infusion, I was re-energized. I was like, yeah, let’s get out of here. One of my good friends from my support group was the one to come and pick me up and take me home. But before going home, she took me to support group, and she treated it like bailing me out of prison. That was memorable. But getting the infusion, it’s kind of a blur. 

How soon after beginning ICE did you get scans?

Originally, I had been getting PET scans, I want to say, once every 3 months because they don’t want to put them too close back to back. There’s a lot of radiation involved, which is already a phobia of mine. But after the second infusion of ICE – there were only 3 that were given – I didn’t feel any lumps anymore. I had a very strange feeling that this had actually worked. 

My oncologist said, “You know what? Let’s schedule a PET scan first thing tomorrow.” The PET scan showed almost complete remission, and no one expected that. It shocked not only my oncologist but also the whole team of doctors that had been in communication. They were like, “Oh my God, we need to fast-track her into a transplant immediately. No waiting.” My oncologist was even like, “Don’t go traveling anywhere.” I said, “I have no intention of doing so. This is a golden opportunity here.” 

Preparing for a bone marrow transplant
Maddie received a bone marrow transplant

By that time, we already knew that if I did make it to transplant, my sister was going to be my donor. They got her into all of her tests and labs and everything. It was a whirlwind over a month’s time of getting all those tests and everything done because we were trying to erase the clock. They decided to bypass the third infusion just to get into transplant. If at any point during those tests and scans, there was any kind of recurrence, then it’s off the table. It was a race against the clock. 

Finally, on March 15th or 14th I ended up moving out to Baltimore and I started the transplant. I had an allogeneic bone marrow transplant. Originally, the idea was to get autologous, which is a lot easier. You’re not dealing with a donor, you’re dealing with your own cells. But because of all the recurrences I had, that was off the table. 

So we were dealing with a donor, and that poses more complications or the potential of more complications, specifically graft versus host disease. Because of that, they have you stay at the hospital for whatever length of time they recommend. For me, they recommended 3 months of being in and out of constant care. 

Describe your experience with getting a bone marrow transplant

They had me stay in housing right across the street from the cancer center at Johns Hopkins. I would just walk across the street every other day almost to get looked at, and take my vitals. Every once in a while I had to do blood transfusions because when you go through the process of a bone marrow transplant, you’re immunity is shot. You undergo 5 days of really, really aggressive chemotherapy followed by total body radiation and I did that for 20 minutes.

Then you do the transplant. The funny part is that they say that the transplant is supposed to be the most boring day out of the whole duration that you’re out there. But for me, my odds have never been great. That ended up being the scariest day of my life. Even though my sister and I were pretty much a perfect match, we had different blood types. When they collected her bone marrow, some of her blood cells got in, and it triggered a horrible reaction to the point where I had to stay under observation for over 24 hours, and I was in and out of consciousness. 

Maddie holding a chemo blanket

I was absolutely sick. Every time I would get back into consciousness, the thoughts going through my head were, “Oh, this is it. This is what they were talking about, that third possibility.” After that, they just monitor you and you’re taking antifungal and antibacterial medication to try to watch as your levels slowly climb back up from ground 0. 

»MORE: Managing Nausea and Vomiting from Chemotherapy

What was the follow-up to your transplant like? 

After the transplant is one giant blur. I take that back, the first couple of days. The first couple of days were pretty traumatic. Not just because of the transplant day occurrence, but shortly after that, my very good friend Needa, the girl who used to bail me out of the hospital, passed away. She had been in remission up until the point where I went in for ICE chemo. As I was slowly getting better, she was steadily getting worse. 

That was very, very difficult for me to take because it really felt like, even though it really makes no sense, it really felt like something in the universe swapped. It felt like I was swapping places with her. It felt wrong because she had so much to live for. She was amazing. After that day, it became a blur. When Needa passed away, that was pretty much where I shut down. All I wanted to do was wake up, have a little something to eat, walk across the street, get monitored, walk back across the street, and go to sleep. I did that for 3 months. 

Quality of Life

A second lease on life
Maddie felt she had a second lease on life

When you’re out there for a transplant, you have to have a caregiver with you at all times just in case. I had a whole calendar of friends and family members who would take shifts and be with me. Half of half of those shifts, I don’t even really remember. I don’t remember half of the friends who came by and spent time with me because I was so out of it. 

As I steadily approached the end of the whole transplant ordeal, and I was getting catheters taken out, I was like, I’ve been standing on the sidelines for so long watching all my friends move on with their lives. I’ve been given a second lease on life, so I want to get back out there. I want to go and do the things that I want to do, which was first, go back to school and get my degree. 

After speaking with the nurses, I managed to sign myself up and register for classes that summer. It was a way to distract me from all of the horrible stuff that had happened over the last 3 years. I put all of that in a closet in the back of my mind, locked it away, and was like, I’m going to focus on my studies. I’m going to get straight As. I made the Dean’s list every semester. But that stuff catches up with you after some time.

Describe the transition back to normal life post-cancer
Maddie's head shaved

At first, it was really uncomfortable because I was going back to school and my head was shaved. I didn’t recognize my body anymore. From all of the stuff that had happened with the thyroid problems, I ballooned and I hated my appearance. I just felt very uncomfortable. 

I was still so determined to try to reclaim whatever normal part of my life I could that I just kept my head down, and focused on my studies. The following year, I also got a job part-time working at a grocery store just to get myself through school. It was an interesting transition, to say the least. 

I was still attending the support group, but as time went on, it felt very strange being in a support group where people were either actively in treatment or they were facing a recurrence. There was a seed of guilt that was growing because it was like, I’m okay right now. So how do you make sense of that? You can’t really. 

Dating after a cancer diagnosis

I kept off for a while after the transplant. In my support group, everyone was basically already married and already had kids. That was never really an issue that was brought up despite it being a young adult support group. The only other young adult who was single was Needa. When she passed away, it was just me there. That was another thing that made it uncomfortable still being in that group setting because it felt like my needs weren’t really being addressed anymore. 

It’s hard to introduce yourself to someone who doesn’t know you, who’s wondering why you’re wearing headscarves every day. Even after treatment, it’s like, how do you explain the last 3 years of your life? When they ask you, “What do you like to do for fun?” It’s like, “Well, right now I’m too tired to really do anything.” I used to have this ongoing joke that I’m a full-time cancer survivor to try to find a little humor in anything I could. 

Dating was very, very difficult for a while there. It wasn’t until probably 2021 when I started really putting myself back out there. That was in the middle of the pandemic so it was horrible timing.

Describe the fertility preservation process 

I went to Shady Grove Fertility here in Gaithersburg, Maryland. Out of all of the doctors – outside of my oncologist – that I interacted with, the doctors and nurses there were out of this world amazing. It was all out-of-pocket costs to do any kind of fertility preservation. It’s not just withdrawing eggs, it’s also like the lead-up to that. Having to go in for ultrasounds, having to get the medication to actually produce those eggs, and they’re not cheap.

Maddie's fertility medications were paid for

When I mentioned to the doctor in my first consultation that the only reason I was doing this was because this is where I’m at. I’m facing a bone marrow transplant in the near future. He felt really sorry for me. He said, “I’m going to discuss things with the finances department and we’ll see what we can do for you.”

At my first appointment, when I showed up for an ultrasound, they were trying to teach people how to give themselves self-injections for medication. Which, at the time, I was not really fond of needles. Finding out that was something that I would have to do twice a day, that was something. But when I went to that teaching class, they gave me a giant bag full of all the meds that I would need. They said, “Don’t worry about it. It’s covered. The nurses all pitched in.” I remember crying when I left the place. They covered basically everything except for the actual retrieval date. Without their help, I probably wouldn’t have been able to do any of that. It was a mind-blowing experience, to say the least. 

»MORE: Fertility After Cancer Diagnosis

Reflections

What advice would you give someone on their own cancer journey? 

First, don’t ever make the mistake that I made by just assuming standard protocol is the thing for you because it might not be. I strongly recommend getting a second opinion, even if your oncologist is one that you really like. Always get a second opinion from a specialist, another oncologist, or someone. Because there might be treatment options that they aren’t even aware of that another person might be. 

When it comes to picking a treatment option, if you have more than one option available, look at not just the statistics, but also the side effects. You have to weigh the pros and cons and figure out what you think your body is going to be able to tolerate. The reason I went with ICE chemo over the clinical trial was because it was something that I was more familiar with, and that I knew that my body would probably be able to tolerate, even if it was the more toxic out of the 2. That’s on top of the fact that, statistically, there was a better outcome than through the clinical trial. I’m sure you know, that statistics constantly change.

Maddie encourages people to get a second opinion
Maddie reminds people not to think too much about statistics
Maddie recommends weighing the options when it comes to choosing a cancer treatment

I strongly recommend getting a second opinion, even if your oncologist is one that you really like.

Don’t let my my story prevent you from actually looking into clinical trial options, because I know quite a few people who had success come from their clinical trials. That’s always something you want to weigh as an option. 

It’s always good to communicate with not just your oncologist or your team of doctors, but also family members, your significant other, or your friends because those are your caregivers. If there’s one thing that I noticed over the 3 years of undergoing treatment after treatment is, that it’s not just you who’s having to cope with the the potential of a bad outcome. It’s also the people around you and it plays a huge role in the way that you look at your treatment. If they’re going into it with a positive attitude, that rubs off on you and vice versa. Definitely something to discuss with them.

Recognizing that everyone’s cancer journey is unique

If there’s one thing that my support group constantly mentioned was, don’t always buy into the statistics because they’re not always right. Half the time they’re not even really up to date. Like I said at the beginning, everyone’s cancer is different. Everyone’s cancer is unique. If you look at statistics, I wasn’t supposed to have pulled through this, and yet, I’m still here. My friend Needa was supposed to have her whole life ahead of her. You can’t just look at cancer at face value and say, “Oh, yeah, that one’s more easily treatable in comparison to this other cancer.” It doesn’t work like that. Doctors really need to consider that because you’re giving your patients false hope that way, and it only bites them in the end. 

The other thing I would say is definitely prioritize your mental health because that’s something that, even after your chemo treatments and everything, is going to play a huge role in your recovery process. That was something that I didn’t address immediately, and I wish I had. The more you put that off, the more you think, “Oh, yeah, I’m fine now that life is going to go back to normal.” The harder it’s going to be to move past all of the trauma that you went through. Even if it’s 6 months or 3 years of chemo, it’s still a huge, huge impact on your life. Your whole world gets flipped upside down and that’s something that you need to address with, a professional. I strongly recommend you prioritize your mental health just as much as you value your physical health.

»MORE: Cancer and Mental Health 

Maddie reflects on her cancer journey

My story is still ongoing. I guess you could say the curse of cancer is the fact that it’s always going to be in the back of my mind, but the further away you are from that moment of actually getting the declaration of remission, the easier it gets. I probably wouldn’t even be here right now if it wasn’t for the support system that I have in place, not just with the therapist, but with family, my very close friends, and the support group that got me through it. I have so many people to thank for just being here. The only way I can really give that back is just to be there for others and give as much support as I possibly can to the cancer community. 


Special thanks again to Pfizer for its support of our independent patient education content. The Patient Story retains full editorial control.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


More Hodgkin Lymphoma Stories


Madi J., Hodgkin's, Stage 1B



Cancer details: Most common and most treatable form of Hodgkin lymphoma
1st Symptoms:
Shortness of breath
Treatment:
3 rounds (6 infusions) of ABVD chemo

Danielle D., Hodgkin's, Stage 2



Cancer details: Diagnosed at age 25
1st Symptoms: Swollen lump on right side of neck/chest area, continued to grow
Treatment: ABVD chemotherapy (3 cycles = 6 infusions)

Lani S., Hodgkin's, Stage 2



Cancer details: Tumor pressing on heart
1st Symptoms: Appendicitis led to CT scan that found tumor
Treatment: ABVD chemotherapy, 7 cycles
Jason

Jason F., Hodgkin's, Stage 2A



Cancer details: Diagnosed at 39
1st Symptoms: Itchy legs, bloated face and “upper trunk,” slow-healing wounds, asthma worsened
Treatment: 6 cycles (12 infusion) ABVD chemo, 18 radiation therapy sessions
Logan

Logan A., Hodgkin's, Stage 2A



Cancer details: Diagnosed at age 15
1st Symptoms:
Lump in neck & fatigue
Treatment:
4 cycles of ABVE-PC chemo

Helicon K., Hodgkin's, Stage 2A



Cancer details: Found lymphoma cells in adenoid tissue
1st Symptoms: Difficulty breathing with blockage in nose, surgery to remove tissue resulted in discovery of Hodgkin lymphoma cells
Treatment: ABVD chemotherapy (4 cycles), radiation (20 sessions)
Lauren

Lauren C., Hodgkin's, Stage 2A



Cancer details: Diagnosed at 23 years old with nodular sclerosis, relapsed after 6 months of 1st-line treatment
1st Symptoms: Itchy body, enlarged lymph node over collar bone
Treatment: ABVD chemotherapy and ICE, radiation, and stem cell transplant for relapse
Wade looking out over a lawn

Wade W., Hodgkin's, Stage 2A



Cancer details: Diagnosed at 18 years old
1st Symptoms: Enlarged lymph nodes (around neck), diagnosed at 18 years old
Treatment: ABVD chemotherapy (2 cycles), AVD chemotherapy (4 cycles)

Moe C., Hodgkin's, 2B, Relapse



Cancer details: Diagnosed at 19, relapsed before remission
1st Symptoms: Fatigue, weight loss, night sweats
Treatment: ABVD chemo, DHAP chemo, MINE-R chemo, splenectomy, autologous bone marrow transplant
Fabiola

Fabiola L., Hodgkin's, Stage 2BX



Cancer details: Stage 2 with bulky disease, relapsed after 1st chemo. Remission after 2nd chemo & bone marrow transplant
1st Symptoms: Shortness of breath, dry cough, fatigue
Treatment: ABVD chemo (6 cycles), IGEV chemo, bone marrow transplant, BEAM chemo, brentuximab
Stephanie

Stephanie O., Hodgkin's, Stage 2B



Cancer details: Stage 2 with bulky disease
1st Symptoms: Shortness of breath, dry cough
Treatment: Stanford V chemotherapy (12 weeks, 1 infusion each week), radiation (20 days)

Chelsea B., Hodgkin's, Stage 2B



Cancer details: Diagnosed at 32
1st Symptoms: Lump in neck
Treatment: ABVD chemotherapy

Katee P., Hodgkin, Stage 2B



Cancer details: Accidentally found in x-ray after months of symptoms
1st Symptoms: Night sweats, fatigue, extreme itchiness, persistent cough
Treatment: AAVD chemo, clinical trial w/brentuximab (Adcetris) + nivolumab (Opdivo) immunotherapy

Mara T., Stage 2BX (Bulky)



1st Symptoms: Shortness of breath, back pains, daily migraines
Treatment: 3 rounds of ABVD, 3 rounds AVD, Radiation
Topics: Self-advocacy, mental health
Jade

Jade B., Hodgkin, Stage 2X



Cancer details: Diagnosed at 21 years old
1st Symptoms: Itchy legs and feet
Treatment: ABVD chemotherapy (4 treatments), AVD (remaining treatments)
Tylere

Tylere P., Hodgkin, Stage 3



Cancer details: Mother is a nurse practitioner; suspected cancer
1st Symptoms: Swollen lymph nodes in neck
Treatment: Clinical trial; Chemotherapy, BMT
Kayla

Kayla T., Hodgkin's, Stage 3A



Cancer details: Possibly misdiagnosed the first time; later diagnosed as grey zone lymphoma
1st Symptoms: Pulled muscle in chest
Treatment: ABVD chemo, radiation, high-dose chemo, stem cell transplant

Erica H., Hodgkin's, Stage 3B



Cancer details: Staged at 3B
1st Symptoms: Intense itchiness, fatigue, night sweats, weight loss
Treatment:ABVD chemotherapy, 6 cycles (12 infusions)

Nicole M., Hodgkin's, Stage 4



Cancer details: Staged 2 then 4 after second opinion
1st Symptoms: Extreme fatigue, persistent itching on lower half of legs
Treatment: 6 cycles (12 infusions) chemo, ABVD then AVD (dropped bleomycin)

CC W., Hodgkin's, Stage 4



Cancer details: Diagnosed at 29, misdiagnosed as mono
1st Symptoms: Achiness, extreme fatigue, reactive rash on chest and neck. Later: chills, night sweats
Treatment: ABVD chemotherapy (6 cycles)

Lia S., Nodular Sclerosis, Stage 4A



Cancer details: Most common and most treatable form of Hodgkin's lymphoma
1st Symptoms:
Extreme lower back pain
Treatment:
ABVD chemotherapy
Ava

Ava O., Stage 4B



1st Symptoms: Trouble digesting, weak immune system, raised glands, night sweats, chest pain, extreme fatigue
Treatment: 6 cycles of ABVD chemotherapy
Topics: Emotional grieving, mental health, letting go

Delishea A., Hodgkin's, Stage 4B



1st Symptoms: Extreme itchiness and dry cough
Treatment: 6 cycles of chemo, radiation, immunotherapy (Adcetris)
Topics: Finding community & support, self-advocacy
Emmanuel S. feature profile

Emmanuel S., Relapsed Hodgkin’s



Symptoms: Enlarged lymph nodes
Treatments: Chemotherapy: ABVD, ICE; autologous stem cell transplant; Targeted therapy: Brentuximab
Kelsey R. profile

Kelsey R., Hodgkin’s, Stage 2A



Symptoms: Bad leg itching with no rash, enlarged lymph nodes
Treatment: ABVD chemotherapy, radiation
Manda M. profile

Manda M., Relapsed Hodgkin’s, Stage 2B



Symptoms: Loss of menstrual cycles, iron deficiency, itching, night sweats, tiredness, night terrors, trouble breathing, difficulty concentrating, enlarged lymph nodes
Treatment: ABVD chemotherapy, radiation, ICE chemotherapy, bone marrow transplant
Samantha S. feature profile

Samantha S., Relapsed Hodgkin’s



Symptoms: Fatigue, cough, enlarged lymph node
Treatment: ABVD chemotherapy (later changed to AVD), Brentuximab, Cyclophosphamide, BEAM chemotherapy, autologous bone marrow transplant
Nicole D. feature profile

Nicole D., Hodgkin’s



Initial Symptom: Fatigue, random rash
Treatment: Chemotherapy (ABVD)
Patrick C. feature profile

Patrick C., Hodgkin’s Lymphoma, Stage 2B



Initial Symptom: Dry cough, difficulty breathing
Treatment: Chemotherapy (ABVD)
Danielle shares her stage 1 Hodgkin lymphoma story
Danielle D., Classical Hodgkin's Lymphoma, Stage 1 Diagnosis: Stage 1 Classical Hodgkin's Lymphoma Symptoms: NoneTreatment: Chemo, ABVD, Immunotherapy, Nivolumab, Brentuximab, Bone Marrow Transplant
Stepheni shares her Hodgkin lymphoma cancer story
Stephenie P., Classical Hodgkin's Lymphoma Diagnosis: Classical Hodgkin's Lymphoma Symptoms: Bumps along the neck, Night sweats, 25-pound weight lossTreatment: Chemo, ABVD, ICE, Brentuximab, Radiation, Stem Cell Transplants

Categories
Breast Cancer Chemotherapy Colon Colorectal Metastatic Patient Stories Treatments

Sherri’s Stage 4 HER2+ Metastatic Breast & Colon Cancer Story

Sherri’s Stage 4 HER2+ Metastatic Breast & Colon Cancer Story

After retiring from the Air Force, Sherri became a mental health therapist and ran a private practice while being a mother to her three children. Feeling burnt out, she took a week’s trip to Costa Rica and noticed feeling out of breath. 

This feeling continued when she returned home which led her to the ER where doctors discovered her oxygen levels and blood count were extremely low. After many tests and exams, a mass was found in her breast. Soon after, she was diagnosed with stage 4 metastatic breast cancer

Sherri was put on 12 rounds of Herceptin chemo and began transfusions. Three months after her breast cancer diagnosis that had spread to her bone marrow, Sherri was no evidence of disease. However, doctors wanted her to undergo a colonoscopy after finding blood in her stool. The colonoscopy revealed early stage 3 colon cancer unrelated to her breast cancer. 

Today, Sherri is currently undergoing Oxyplatin chemo and transfusions for colon cancer. She shares her story with us, including how she deals with anxiety, how cancer has catalyzed inner healing, her experience with chemo and its side effects, starting a podcast to spread hope, and her advice to those on their own cancer journeys.

Sherri shares her breast cancer symptoms, treatment and side effects
  • Name: Sherri O. 
  • Diagnosis (DX):
  • Stage: 4
  • 2nd Diagnosis (DX):
  • Stage: 3
  • Symptoms
    • Shortness of breath
    • Lump under armpit
    • Not feeling herself
  • Treatment:
    • Chemotherapy
      • Pertuzumab
      • Herceptin
        • 12 rounds
      • Oxyplatin
        • Every 3 weeks
    • Transfusions
Sherri's breast cancer timeline
Sherri's colon cancer timeline

There’s not enough hope and inspiration. That’s what I want to give to the world.

Sherri O.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Symptoms & Diagnosis 

Tell us about yourself
Sherri has 3 children

My name is Sherri and I am a single mom. I have 2 adult children, which is so weird to say. I have a daughter who just turned 21 in August, my other son is 19, and I have one left in school. He is a senior this year and he’s 17. 

I served in the Air Force for 23 years and retired in 2017. I’m not really active in this now because of everything that happened in the last 9 months, but I became a mental health therapist. I went back to school in my 40s, got my master’s in clinical counseling, became a therapist, and ran a full private practice for about 5 years. 

I have a dog named Chief and we also have a bird my daughter named Pickles. We have a cat named Maui. I had a house built a couple of years ago. We’re living in a farming community in Colorado, which I love.

What were your first symptoms? 
Sherri began experiencing shortness of breath

Hindsight is 2020. I was having signs of some things that were off that I was downplaying. I thought I was healthy. I was working out, I was running my business, and I was feeling a little bit burnt out so I decided to take a trip to Costa Rica. I thought this was going to be great. I’ll take some time away from my business, settle down, and do some unwinding in a beautiful place. 

I went for about a week. I did notice when I was there that I was out of breath a lot more. I was like, it’s probably the shift in altitude or maybe it’s jet lag. I went on a little bit of a hike and I was out of breath and it wasn’t too bad. 

I didn’t really have anything significant happen until I got back, which is a blessing in disguise. I was walking up to the post office and I was carrying a couple of boxes and I thought I was going to pass out. My heart started beating really fast and I was like, okay, there is something really going on here. I might have a virus or something. 

Taking a trip to the ER

I met one of my friends for brunch and I said, I just don’t feel right. I feel off. I’m not sure what’s going on. I came back home and I called the nurse triage line and I was telling them my symptoms. She was like, “You need to go to the ER,” so I went. I drove myself to the ER because I thought that I picked up a virus or something from Costa Rica. 

I got to the ER and they were like, “Your oxygen is at 70. You have to stay here.” It was very weird. It was a whirlwind of things going on. They did blood tests and they they said that my platelets and my hemoglobin were tanking. I needed a blood transfusion. I need a platelet transfusion. It was very weird for me. I was like, What? This is insane. I felt fine two days ago. 

Sherri went to the ER after her nurse recommended it

I started getting transfusions, they admitted me to the hospital, and they were like, we don’t really know what’s going on. They did find a mass under my right breast because they were turning over everything and they were testing me for everything. We needed to do a mammogram and sent me to another hospital. 

Sherri was diagnosed with metastatic breast cancer
What was your diagnosis? 

I got transferred to an ICU in Denver and they ended up finding out that the mass under my right breast was cancerous, and the reason why my blood was tanking was because it had metastasized to my bone marrow. After Thanksgiving, they diagnosed me with stage 4 metastatic breast cancer. That was the beginning of the whirlwind story. This was November of 2022.

Did you suspect you had cancer? 

It’s not anything that crossed anybody’s mind. In fact, the doctors were very focused on a parasite, on a virus, because I’m pretty healthy. I’m 52 now and I’ve always been in good shape. They were very perplexed as to what was going on. They did a really good job though of turning over everything. They tested me for everything you could think of. That’s what it ended up being, unfortunately.

Did you ever feel a lump?
Sherri didn't suspect at the time she was diagnosed that she had cancer

They ended up finding out that the mass under my right breast was cancerous, and the reason why my blood was tanking was because it had metastasized to my bone marrow.

No, I didn’t feel anything. In fact, my last mammogram, they were like, “Your breasts are very dense.” I guess the older you get, your breasts get more dense and I never felt anything. I also had a swollen lymph node in my armpit and I just didn’t recognize any of that. 

Again, hindsight is 2020 and it’s really important to check those things and to pay attention to your labs. That was one of the big things I’ve learned is that I was anemic. I had been anemic for a really long time and I just didn’t do anything about it because I just listened to what the doctor said. They’re like, “You’re fine as long as it doesn’t go below this number.” However, I think it’s really important to look at those things and to go, okay, what could I do differently to get out of anemia? It is possible to not be anemic, because I’m not anemic now, which is crazy because I was anemic almost all my life.

Processing A Cancer DX

How did you react to your cancer diagnosis

I didn’t. My sister was with me at the time they said that. I knew it wasn’t good, and they also said it was aggressive. They use that actual word. I just left my body. I think that being in mental health, we can go into fight or flight or freeze. I totally froze. I don’t think I was even in my body, to be honest with you. I left the building, basically. 

My sister cried, and she said, “You didn’t even have a reaction.” It wasn’t hitting me. It didn’t hit me until way later. I think it took me a couple of months to really get out of the fog. Part of it was I had low blood count, so I had no energy. I was tired, I could barely walk from the couch 5 feet to the kitchen, that’s how tanked I was. I think part of that was why I didn’t have a reaction is, I was in a fog and I only wanted to rest and everything was wearing me out. 

It wasn’t until a couple of months later that I attended a support group, which I wasn’t ready for. It was people that had been going through cancer and they were all younger than me. Very young. They were all at different stages. I was the only stage 4. I’m listening to their stories and I’m like, I’m doomed because they had all gone through all these things. I’m like, well, what about me? I’m stage 4. I don’t even have a chance. That’s how I was taking it. What I learned from that was, that my story is different than their story. We don’t all have the same story. 

Sherri froze when she discovered she had cancer
Sherri assumed she was doomed when she learned she had cancer
It took Sherri a while to process her diagnosis

I totally froze. I don’t think I was even in my body, to be honest with you.

Learning to accept a cancer diagnosis 

I had a massive breakdown, which I think needed to happen. Coming out of that, that was when I came into acceptance. I was accepting that this was what was happening and what can I do now. 

The other important piece is that I’m still alive. I’m here, I’m not dead yet, so what can I do now that I’m here in this moment? I can succumb to it. Or I could just live. I started to put one foot in front of the other and go, I’m alive and I’m going to make it count. I believe that mentality has been so crucial to my healing. I don’t think I would be healed if it wasn’t for that piece of it and the attitude.

Sherri learned to accept her breast cancer diagnosis
What were the first steps in your cancer treatment? 

The first part was I had to have my blood levels at a certain point before they would do anything with me. They wouldn’t treat anything, they wouldn’t do surgery, nothing. They didn’t want to touch me because my blood counts were so low. To put it into perspective, my platelets were about 20,000 and to be at a healthy level, you need to have 150,000. I wasn’t even close and they were not going up very fast. 

I started to get really diligent about seeing the numbers go up in my mind. I asked, what number do I need? You need at least 90,000. I started to picture 90,000 and then it happened. Then every time I would ask, what do I need next? I would visualize it and then it would happen. 

Pretty soon they put me on a targeted treatment and pertuzumab and I started to get better. I kept getting better and better. Even the blood transfusions helped me to get better as well. I ended up transferring from VA in Denver to Banner MD Anderson and then they started me on Herceptin and I was on that for 12 rounds of chemo. I lost my hair. I had really long hair, and now it’s growing back, which is great. 

Reframing a cancer diagnosis 

I’ve had such great care from VA to Banner, everybody has been so good to me and so supportive. Sometimes the language would get to me. One of the doctors said, “It’s aggressive, you’re really sick.” She kept using those types of words and I was like, I have to switch that in my mind because if I focus on that, I’m going to be depressed. I started saying, that’s an opinion. A diagnosis is an opinion also. What can I do differently within my body, myself, and my mind? I started visualizing myself healthy and on that track, and I just kept getting better and better. Language is everything. Your words, the things that you say, really do matter. 

Sherri experienced hair loss after chemo
Sherri shaved her head after her hair began to fall out
Sherri learned to reframe her cancer diagnosis to be more positive

Realize that stage 4 is not the end. I think when you hear cancer, at least when I used to hear the word cancer, I’m like, that person’s just done. It’s just not true. It’s a misconception. I’ve learned that you can still live a long time. 

There’s so much misinformation. When I was first diagnosed, I was like, I got to figure this out. I started going on all kinds of crazy diets and supplements to have some sense of control. I let go of that and realized I didn’t need to do all this crazy stuff. I’m going to be okay. I’m going to live in the moment as much as I can. The truth is that nobody knows our timelines, even a doctor doesn’t really know. They can speculate. I think the most important thing is listening to yourself, and listening to what your body is saying to you, is key to the whole thing.

I’m here, I’m not dead yet, so what can I do now that I’m here in this moment?

Healing the heart
Sherri healed heart wounds during her cancer journey

One of the things that has come up for me with all of the cancer stuff is that there were things in my body that needed to be healed. It sounds a little weird. However, I will ask my body, what does this mass mean to me? What is it wanting to tell me? 

I’ve healed so many mother wounds and nurturing that I was missing. The breast is all about nurturing yourself. I wasn’t taking good care of myself like I thought I was and giving myself what I needed. I remember somebody asked, “Well, what do you need?” I automatically was like, I don’t need anything. I didn’t even check in with myself to ask myself what I needed. 

Remission

Taking a sabbatical to focus on health
Sherri took a sabbatical to focus on her health

That’s been a whirlwind too, all the appointments. At the beginning of it, I was looking at my calendar and I was like, there are so many appointments. How is this going to work? I decided to put myself on a sabbatical, which was one of the best things I could have ever done for myself, to just stop everything else and really focus on my health.

Did your body have a positive reaction to cancer treatment?
Sherri went into remission after her chemo treatments

For stage 4 HER2+ breast cancer that I have, I have to do an infusion every 3 weeks. I’m still on that every 3 weeks. I’m not done with the chemo for the breast cancer and I have had 3 PET scans since November. 

I will tell you the good news, which is that the first scan was awful. They said that my bones were riddled with cancer and that it was not going away. That was in November. Then I had a scan 3 months later, in February I believe, there was no evidence of disease in my body. In that short amount of time, I have no evidence of disease in my body. Even I was like, are you sure? I was questioning it. 

I had the same reaction I had when I got the diagnosis. I was numb. I didn’t have a reaction because I just didn’t believe it. I was like, how is that even possible? Two weeks later, I brought a friend with me and I said, “Can you listen for me? Be my ears?” That’s one thing I’ve also learned is you need to have an advocate. Because as a patient, you hear things totally differently than somebody outside of it. I think that’s important. 

Becoming NED

I asked the nurse, “Do you call that remission? What do you call this?” She said, “No, there’s no evidence of disease.” They showed me on the scan that the mass and the swollen lymph node were gone. It still blows my mind. Those scans are every 3 months. I just had another one a couple of weeks ago and that one is also clean. There’s no evidence of disease on that one. 

I had a fractured rib in January. They showed a fractured rib and they had some other stuff on the bottom of my ribs and those are completely healed as of this last scan. So the doctors are like, “You’re doing great. Your body is healing.” My infusions are every 3 weeks, which at first I was like, that sucks. However, I don’t have a lot of side effects from that infusion at all. It’s just like going and getting vitamins to me. I’m not going to lose my hair from it or anything like that.

Sherri became NED
Did you have side effects from chemo?

The chemo that I got, Herceptin, the side effects were feeling very heavy and I did a lot of resting. I didn’t have any nausea or anything like that. I didn’t have a lot of side effects. It was mainly just heaviness and wanting to lay down a lot. I didn’t do a whole lot during those 12 rounds. They were every week, so I was pretty tanked. When you do chemo, your blood levels tend to go down. I was in and out of anemia, like a roller coaster. I rested a lot during that time. I didn’t do a whole lot of anything. It wasn’t bad, it was just a blah feeling.

»MORE: Cancer Treatment Side Effects

2nd Diagnosis 

Sherri received a second cancer diagnosis of colon cancer

A couple of days later, the doctor who did the colonoscopy called and said that it looked like I had cancer. That was really shocking.

Receiving a second cancer diagnosis 

The good news about the [breast cancer] diagnosis is that I’ve had 3 scans. The last 2 scans showed no evidence of disease, I didn’t have to have any sort of breast surgery, the mass that was under my right breast disappeared, and I had a swollen lymph node in my armpit that is gone. The last scan was 2 weeks ago, so this is about 9 months after diagnosis, which is incredible. I was no evidence of disease on the last round of chemo treatment that I had for breast cancer. I got to ring the bell, which was awesome. 

When I first went into the hospital for breast cancer, they tested my stools. They were testing everything. In January, they found traces of blood in my stool. The oncology team didn’t want to do a colonoscopy because I was in a very vulnerable state, body-wise. They wanted to wait until after I had done the 12 rounds of Herceptin. I did all of that and I waited a little bit. Then I got scheduled for a colonoscopy and did that procedure. A couple of days later, the doctor who did the colonoscopy called and said that it looked like I had cancer. That was really shocking and I did have a breakdown right away. I reacted a lot differently than I did the first time.

The first time, I was very numb. The second time, I was really mad and upset. I did have a meltdown. Then I came out of that and I was like, okay, I don’t know where it is exactly. I didn’t have a stage yet. They wouldn’t have been able to tell me that until after the surgery. They scheduled surgery. I had a polyp that they had to remove, and I also had something in my rectum. However, they wanted to break it up into 2 different surgeries. The one in the rectal area was not cancerous at all. They took the polyp out, they tested it and it was cancerous. They also tested 35 lymph nodes. Out of the 35 lymph nodes, 2 of them were positive for cancer. They classified me as very early stage 3 colon cancer, which is totally separate from the breast. Now I’ve got the breast cancer under control and have been diagnosed with colon cancer.

Sherri rang the bell after finishing cancer treatment

»MORE: Cancer Surgery Treatments 

How long after your first diagnosis did you receive your second diagnosis?

I was diagnosed in November with metastatic breast cancer, then I was diagnosed with colon cancer in July.

Did you suspect you had cancer again?

I kind of suspected it. Again, when you’re looking back at something, it’s easier to see it. When you’re in it, you don’t really see it. I had downplayed some of my symptoms. During pregnancy, I got hemorrhoids. I have had those off and on. A lot of times there’s a little bit of bleeding that happens when you go to the restroom but I was like, it’s just hemorrhoids. It’s no big deal. It wasn’t, it was actually colon cancer. 

If I don’t do it, it’s a 50% chance that it will come back. If I do the treatment, then it’s a 10% chance. It’s better if I do the treatment even though I don’t want to do it.

Sherri ignored symptoms of colon cancer such as blood in her stool
Sherri downplayed symptoms

I just kept downplaying my symptoms. It was a good thing that they did test that and caught it when they did. There’s a test that I highly recommend people get. It’s a Signatera test where they actually test if there’s any residual cancer in your bloodstream. I did the lab, and I did the blood test prior to the surgery and it was positive. That means that there’s cancer in the bloodstream. Then they said, “We’ll test you again afterward.” They tested me again after they took it out and it was negative, which is really a good sign that it’s not going to come back.

Did you go back on chemo after your colon cancer diagnosis? 
Sherri went on chemo again for his second cancer diagnosis

To prevent reoccurrence, they wanted to do more chemo, which I wasn’t really happy with because I was like, I just got through this thing. I don’t want to do this again. I was in complete resistance to it. I had to really listen to my doctor. I said, “I don’t want to do this. What’s the risk-reward?” Basically, it’s 50/50. If I don’t do it, it’s a 50% chance that it will come back. If I do the treatment, then it’s a 10% chance. It’s better if I do the treatment even though I don’t want to do it. I made the choice to do it. I started it 3 weeks ago and it’s added to the infusion that I’m doing. The good news about this is that it’s only 3 months. I’m currently on that now.

Do you have a family history of cancer? 

I don’t have anything genetic. I did the genetic testing and I don’t have the BRCA1 gene for breast cancer, so I don’t know. I’ve been investigating it a little bit and I’m convinced that it’s environmental. However, I don’t really know. I don’t know how to prove that. I don’t have any idea. 

It is very odd that they’re 2 different separate cancers. I asked, “Is it because of the breast?” They said, “No, it has nothing to do with it.” I’m not a doctor, so I don’t know how they know all this. My instinct is that it’s environmental. I was in the military for a long time and I was exposed to fumes and asbestos and different things like that. It could be that, but I don’t know.

Sherri doesn't have a family history of cancer

Quality of Life

Have you experienced side effects from your current chemo treatments?

I’m on Oxyplatin and that will be every 3 weeks. I did the first round not that long ago and my side effects are a lot different. I wasn’t expecting that. I was like, I got it. This will be a piece of cake. No, it’s actually way different. I have a lot more nausea with this drug. I have one of the things that Oxaliplatin does when you touch something cold, it burns or stings like frostbite. I do have that tingling in my fingers. I have a sensitivity to my jaw when I eat anything, it has to be very warm. Anything remotely cold sends a shock to my jaw. Sometimes I’ll have tingling in my hands and feet. That’s not too bad. The biggest thing is the nausea. It doesn’t feel great. 

Sherri is now eating plant-based since being diagnosed with cancer

I eat a lot differently than I used to. I eat a lot more. I’ve actually gained weight this time, which is great because when I started the breast cancer treatment, I was 145 and I dropped to 120. When I found out that I needed to go into another round of treatment, I was like, I got to get my weight back up. I started eating differently. I went plant-based. However, I ate a lot more rice, potatoes, and carbs so that I could gain weight. 

I started working out more, which has helped me tremendously get through this chemo. I’m going into this one a lot stronger. I think that the side effects are like 2 or 3 days. I haven’t had the tingling, the cold stuff doesn’t stay around. That’s been a good sign I can do this, I can get through this. I’ll be on this treatment for 3 months.

Yogurt and bananas helped Sherri with her nausea
Has anything helped with the nausea? 

Bananas and yogurt, for some reason, seem to be my thing. Walking and exercise actually really help with it as well. There’s an app called Couch to 5K, so I’ve been doing that. It’s basically interval training. It’ll be walk 5 minutes, run 1 minute, walk 2 minutes. It has really helped me a lot. I’ve been running a little bit more, which has been really great. I have more energy because I do that. The weight training has helped me gain weight back.

»MORE: Managing Nausea and Vomiting from Chemotherapy

Describe prep and recovery for your surgeries

The first one, the prep was that I had to do 5 days of Ensure shakes, and that was a little rough for me because I had eliminated sugar from my diet. I didn’t eat a lot of sugar because sugar just caused my body to be more inflamed. I had to drink those for 5 days. It was 2 drinks a day and so many calories. That was the prep for the surgery. I had to do some fasting before. That surgery went really well. 

Sherri discusses her surgery prep and recovery

I was in a lot of pain coming out of it because it was a colon resection. They took out part of my colon and resected it, put it back together. I had a very non-invasive surgery. They did robotic laser surgery. You can’t even hardly tell that I have scars, which has been really nice. I am so grateful for technology now because, if this had been in the 80s, I might not be here. We’ve come a long way in science and how much we’ve advanced. The recovery time, I was in the hospital for 5 days after that one. 

Then they did the other rectal surgery separately because they just thought that doing both of them wouldn’t be a good idea. I agree because the second one was very painful to go to the bathroom. That was only a day’s procedure. I was in and out of the hospital the same day. However, my recovery time for the second one was a lot longer because of where it was. That one was a little tough for me.

I bounce back pretty fast. I think part of that was because I had gone into it with my body a lot stronger. I had gained more weight. I was exercising. I bounced back quicker because of that. They told me, “It’s going to take 6 weeks [to recover] for both,” and it was really minimal. It was maybe 3 weeks for both, so half the time.

Sherri did not need a colostomy bag after colon cancer
Did you have a colostomy bag? 

No colostomy bag, Nothing like that. I do have to go back and get a scope just to make sure they got everything in a couple of months. I did the blood test again, the one that I did prior to when they found out I had it. It was positive for cancer. I just did it again and it’s negative. It’s a really, really good sign and now we’re on treatment to keep it from reoccurring.

How often are you receiving scans? 

I just recently did the PET scan. I’m not sure if they’re going to move me to 6 months since the last 2 were clear. With scans, you’re putting yourself in radiation, so you have to be mindful of that. I don’t know if I’m going to be every 6 months or not. I’m assuming that’s what’s going to happen. I’ve had to have some brain scans just to make sure that breast cancer doesn’t metastasize to my brain. I probably have one of those coming up. Those are every 6 months. The more you’re healing, the less you have to do.

Reflections 

Sherri reflects on her journey with cancer
Do you ever experience scanxiety?

I did go through that this last time, actually. I went through it more this time than I did the last time. The last time I was like, it’ll be what it is. I just didn’t really think about it too much. This time, I just really want a clear scan again. When you get your labs done, they look at all the cancer markers and everything has been good. 

I did have a lot more anxiety come up this time, which was very interesting for me. I was walking it out and I’m like, I don’t know what I’m afraid of. I just started to ask questions. I think to alleviate anxiety is to face it versus running from it. A lot of times with anxiety it’s like, I have anxiety, I’m so anxious, take a deep breath. Well, that doesn’t really get to the root of it.

Facing anxiety 

To alleviate anxiety is to face it versus running from it.

What helped me was asking really good questions like, what are you afraid of? I’m afraid it’s going to come back. If it’s going to come back, then what are you afraid of? I’m afraid I’m going to die. If you die, what else are you afraid of? I’m afraid my kids are not going to know what to do with themselves because they don’t have their mom here. Why are you afraid of that? The root of it was guilt that I hadn’t prepared them for life. 

The thing that you think you’re afraid of is really not the thing. It’s important to ask those types of questions to get down to the root of it so you can pull the root out and go, okay, it’s guilt. I didn’t have any clue it was guilt. It really helped me alleviate that anxiety. Then I got a clean scan.

»MORE: Cancer and Mental Health 

Sherri emphasizes facing anxiety rather than running it from it
Sherri recommends pulling out the roots behind anxiety
Finding gratitude in one’s cancer journey

I say that things don’t happen to you, they happen for you. It’s a weird thing to say that I’m grateful for cancer. It’s so true though, because I have healed so many things in my body and I have more inner freedom and peace than I ever have had in my life because I started to face it versus running from it. Fear happens. It’s like, what’s going to happen to me, and what’s going to happen to my kids? All of that is real. It comes up and it’s like, I have a choice. I could either face it or I could run from it. 

Another thing I heard a long time ago was, get to know fear. If you get to know it, it dissolves. It starts to melt away a little bit and it’s like, okay, I could do this. There isn’t anything to be afraid of. We’re all going to die at some point. We don’t know when. For me, it was switching to, I get to live today. I’m so grateful to be alive because, in November, I could have been dead. I appreciate that I’m alive. That’s key. I’m breathing today, so I get to live today. 

I started a podcast to help other people and that’s helped me because it’s like, I’m back to life. I realized that one of the big things for me was realizing how disconnected I was spiritually. That has totally changed. I feel so much more connected to God and my faith. It wasn’t something I think I would have had with all of these things. Again, the key for me is living, being appreciative and grateful for where I’m at, and also giving. This is one of the reasons why I wanted to do this story is because I do think that we need a lot of hope and inspiration in the world, especially around cancer and people having a disease. I think this could help lots of people have hope and faith in themselves.

Sherri discusses being grateful for cancer

It’s a weird thing to say that I’m grateful for cancer. It’s so true though, because I have healed so many things in my body and I have more inner freedom and peace than I ever have had in my life.

What advice do you have for someone on a cancer journey?

The message of hope I would give is that you have to remember that your story is different than everybody else’s. I think a lot of cancer patients go into comparison – this person did that, and this person did this, and this person died, and this person didn’t. The most important thing is that your story is your story. It’s not the same as everybody else. Your body is different than everybody else’s as well. That’s why it’s so important to listen to yourself. 

I had dense breast tissue and I didn’t investigate it. Look at your labs and ask lots of questions. When COVID happened, I didn’t get a physical because they wanted to do it virtually. I asked questions like, well, what am I going to do? I need a colonoscopy, I need a breast exam, and I need all these things. “Don’t worry,” they said. “Everything was fine last time, so you’ll be fine.” It can change very fast. It’s really important to investigate yourself and definitely get your exams done on time every time and ask lots of questions, especially if you’re feeling like something’s off now. 

Sherri shares her advice for others on their cancer journey
Sherri has learned to be hyper-vigilant about her health
Sherri emphasizes surrounding yourself with people who support you

My hemoglobin was off for a long time and the doctors downplayed that. I trusted what they were saying. I think that you should trust it to an extent and also ask lots of questions because it sure helps. Now I’m very hyper-vigilant. My labs, I know exactly what they mean.

Have a lot of people around you to support you. I’ve had so much support and I have really good people in my corner where I’m like, “Hey, I need you to come with me because I don’t know how I’m going to hear it.” That’s really critical because there’s been so many times on this path where I’ve heard something and it’s not what was said. Even with the clean scan, I just heard it’s getting better. I didn’t hear that there was no evidence of disease. When my friend went with me, I asked, “Did they say what I think they said?” She said, “Yes, that’s what they said.” Having that person in your corner is really, really important.

Spreading hope and inspiration 

There’s not enough hope and inspiration. That’s what I want to give to the world.

In life, we’re going to go through ups and downs anyway. Just because I have cancer doesn’t mean I’m different than anyone else. We still all go through things and we’re all going to have ups and downs in life. The only guarantee about life is it changes all the time. We’re all going to go through something. 

I think that it’s important to be kind to yourself and give yourself what you need. That’s one thing I’ve learned, I have to check in with myself and go, what is it that you need? Don’t dismiss what you need. If somebody asks you what you need, tell them because people want to give you what you need. I think that’s really helped me to navigate this. 

Sherrie makes spreading hope and positivity her mission

A really good attitude has been appreciating where I’m at. I could make the choice to be in a corner and curl up in a ball. By giving back to the community, by sharing my story doing the podcast and videos, or whatever I can do to get the message out, I’m going to do it. Because there’s not enough hope and inspiration. That’s what I want to give to the world is more of that versus doom and gloom. 

Wherever your focus is, if you’re looking at all the train wrecks, that’s what you’re going to get. Look at where all the miracles are happening. I would prefer to see that.

More Metastatic Breast Cancer Stories

Sherrie shares her stage 4 metastatic breast cancer story
Sherri O., Metastatic Breast Cancer & Colon Cancer Diagnosis: Colon & Metastatic Breast Cancer Symptoms: Shortness of breath, lump under armpit, not feeling herself Treatment: Chemotherapy, Transfusions
April D.

April D., Metastatic Triple Negative, BRCA1+



Symptoms: Four lumps on the side of the left breast
Treatment: Chemotherapy (carboplatin, paclitaxel doxorubicin, surgery (double mastectomy), radiation (proton therapy), PARP inhibitors
Brittney shares her stage 4 breast cancer story
Brittney B., Metastatic Breast Cancer Diagnosis: Stage 4 Breast Cancer Symptoms: Lump in the right breast, inverted nippleTreatment: Surgery, chemo, immunotherapy, radiation
Bethany W. feature profile

Bethany W., Stage 4 Metastatic



Symptoms: Lower back pain
Treatment: Chemotherapy, radiation, maintenance treatment

Abigail J., Stage 4, Metastatic



Cancer Details: HER2-low, node negative, PIK3CA mutation



1st Symptoms: Back and leg pain, lump in breast



Treatment: Surgery, chemotherapy, radiation, CDK4/6 inhibitors

Alison R., Partially Differentiated DCIS, Stage 4 Metastatic



Cancer details: Triple positive = positive for HER2, estrogen receptor (ER), progesterone receptor (PR)
1st Symptoms: Lump in underarm/breast
Treatment: Chemotherapy, surgery, radiation, targeted therapy
Erin

Erin C., IDC, Stage 2B/4, Metastatic, Triple Negative



Cancer details: Triple negative doesn’t have any receptors commonly found in breast cancer making it harder to treat
1st Symptoms: Pain in breast
Treatment: Surgery, chemotherapy, radiation

Shari S., Stage 4, Metastatic, Triple Positive



Cancer details: Triple positive = positive for HER2, estrogen receptor (ER), progesterone receptor (PR)
1st Symptoms: Lump in breast
Treatment: Surgery, chemotherapy, radiation

Renee N., IDC, Stage 3-4, HER2+



Cancer details: IDC is most common kind of breast cancer.
1st Symptoms: Lump in breast
Treatment: chemotherapy, bilateral mastectomy, radiation
Categories
Cancers MPN myelofibrosis Patient Stories Stem cell transplant Treatments

Stacy’s Myelofibrosis Story

Stacy’s Myelofibrosis Story

Interviewed by: Alexis Moberger
Edited by: Katrina Villareal

Stacy S.

Stacy shares the subtle symptoms she experienced that eventually led to her diagnosis of myelofibrosis, a rare type of bone marrow cancer.

In 1999, Stacy was initially diagnosed with essential thrombocythemia (ET), a disorder that causes the overproduction of platelets. She initially went in to see her doctor because of what she thought were thyroid issues until her blood work showed a platelet count that was off the charts.

After being referred to an oncologist and getting a bone marrow biopsy, she was told she had a bone marrow disorder. Despite not having any symptoms, she was put on medication and continued seeing an oncologist for the next two decades.

During one of her annual checks, her new oncologist found blasts in her blood. The biopsy results subsequently showed myelofibrosis with a non-aggressive mutation.

Shortly after, she consulted with renowned MPN specialist Dr. Serge Verstovsek and found out that she had another mutation. This one was more aggressive so she was put on the stem cell transplant list immediately.

She talks about going through the uncertainty of initial diagnoses when it comes to myeloproliferative neoplasms, going through stem cell transplant, managing an enlarged spleen, and the questions she faced with treatment decision-making.

In addition to Stacy’s narrative, The Patient Story offers a diverse collection of myeloproliferative neoplasm (MPN) stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.


  • Name: Stacy S.
  • Diagnosis:
  • Mutations:
    • CALR
    • ASXL1
  • Initial Symptoms:
    • Fatigue
    • Cold hands & feet
  • Treatments:
    • Agrylin (blood thinner; for thrombocythemia)
    • Ruxolitinib (JAKAFI)
    • Fedratinib (INREBIC)
    • Stem cell transplant
Stacy S.


Introduction

I grew up with five brothers. I’m the only girl and the youngest.

I live in Tomball, a suburb of Houston, Texas. I love sports. If Houston has a sports team, I root for them.

I did community theater for about 25 years. It wasn’t the applause that I loved. What did it for me is when you hear people laugh or in a drama, when you hear that silence when something is really, really tense. It’s been tough to let that go, but I don’t have the energy anymore.

I’ve channeled it into something new. I’ve been writing and directing little skits for Vacation Bible School at church. It’s been a whole different world for me.

Stacy S.

I had thrombocythemia. They gave me medication. It was great for 17 years. Then they noticed some immature cells and my platelets dropping. That’s when they found the myelofibrosis.

Stacy S.

Pre-diagnosis

Initial symptoms

In September 1999, I thought there was something wrong with my thyroid because I had some fatigue. I was tired. My hands and feet were cold, but I don’t know what caused that.

They did a blood test. My platelets were through the roof that they couldn’t even read and had to send out. It was 1,400,000.

When they did a bone marrow biopsy, that’s when they found that I had thrombocythemia. They gave me medication. It was great for 17 years. Then they noticed some immature cells and my platelets dropping. That’s when they found the myelofibrosis.

At work, my lunch hour was always my time to work out. I would do the elliptical and strength and/or core. I would start out on the elliptical and instead of being able to add more resistance or go faster, I get out of breath faster and can’t do more. I’ve got to do less or take away resistance. All I could think of was, Is it because I’m getting older? That was my excuse for it.

That happened in April 2016.

Diagnosis

When the results came back, I said, “Let’s do them again. I want to make sure. Let’s do them again before we do a biopsy.” We did them again. I got scheduled for a biopsy and that’s when they found out that it was myelofibrosis.

In 1999, thrombocythemia was considered a bone marrow disorder. It shifted in 2006. My oncologist never told me. I always went for my annual CBC and everything looks great.

When I went in after my biopsy and my oncologist said, “You’ve always had cancer,” that’s when I looked it up online. In 2006, they upgraded it to describe it as cancer.

I thought thrombocythemia could turn into acute myeloid leukemia. That’s what the little sheet of paper he gave me said. I never heard about myelofibrosis or polycythemia vera.

Stacy S.

The second bone marrow biopsy was a nightmare… The painkiller they gave me wasn’t working.

Stacy S. with friends
Testing

I had a biopsy. The first one was great. I had twilight in 1999 so I felt nothing.

The second one was a nightmare. Since myelofibrosis is scarring of your marrow, it’s harder to get that sample. I was at the table for about 40 minutes. They kept on trying and couldn’t get a sample so I sat there for another 30 minutes. They brought a second team and they kept on trying until they got a semi-sample.

I found out that morphine doesn’t work on me. The painkiller they gave me wasn’t working so it was hellacious.

Processing the Diagnosis

They said, “You’ve got one mutation, but it’s not very aggressive.” It was the CALR, which was the “good” mutation. If you have myelofibrosis, this is the one you want. The prognosis was 15 to 20 years. I thought, Hey, I’m cool with that. That gave me until I was 70 so I was happy with that.

Stacy S. with friends

I’m living each day like I might not have tomorrow, but I’m going to make plans for next month. I’m going to make plans for next year. I’m buying Christmas presents. I’m living like I usually do. I’m not going to focus too much on that because it’s not up to me anyway.

Stacy S.

Treatment

Medications

I took Jakafi for about six months, but my platelets were crashing and my spleen was still getting bigger so I got off it.

Then I did thalidomide and that was tremendous. It was great. That helped me a lot. It pushed my numbers up.

But in April 2017, I said, “I’ve got a little numbness in my right foot. Is that neuropathy?” My oncologist said, “No, no, no. If you don’t have it in your left foot and just your right, then it’s fine. It would be in both feet.”

August came around and I said, “I’ve got numbness in both feet now.” I had already stopped taking it. I really wish I stopped taking it in April because whenever I got chemo, that’s when it worked its way all the way up to my knees.

I started to go to MD Anderson to the world-renowned myelofibrosis doctor Dr. Verstovsek. He did a few more blood tests and got some of the samples from my biopsy. He said, “Yes, you do have the CALR, but we found a second mutation. We found the ASLX1, which is one of the more aggressive ones so we suggest you do the stem cell transplant because you’ve now got 2 to 5 years.”

I’m on a Facebook page where many people have been told that they have 2 to 5 years and they’re saying, “Yeah, but I’m on my year 10,” “I’m on my year 15,” so it’s okay.

I’m living each day like I might not have tomorrow, but I’m going to make plans for next month. I’m going to make plans for next year. I’m buying Christmas presents. I’m living like I usually do. I’m not going to focus too much on that because it’s not up to me anyway.

Stacy S. with friends

‘We suggest you do the stem cell transplant because you’ve now got 2 to 5 years.’

Stacy S.
Stem Cell Transplant

The stem cell transplant was in March 2019.

Before the stem cell transplant, you go through a boatload of tests, like a bone marrow biopsy. Your family goes through training on what to expect. For the first 100 days, you have to be prepared to be within an hour of the hospital and then expect to say about a month in the hospital.

You check in and they put in a port for them to give you medicine, do blood draws every day, and also give you your chemo.

Side Effects

The other thing worse than the chemo was the immunosuppressive treatment. That’s the worst thing I’ve ever been through in my life. It was basically to crash your immune system.

I’ve never had the flu, but I’m guessing this was like getting the flu times three. You get a fever. I’ve only had probably five fevers in my life. My fever spiked to about 102°F or 103°F. I remember seeing my hands shaking. My body was shaking.

I learned to meditate so I started to meditate and I could calm it for like 6 or 7 seconds then it would start up again. The bone pain in my legs was so excruciating. I had to get out of bed and walk around. They gave me three doses of either Percocet or Darvocet. After about 3 or 4 hours, it finally went away.

I had a little nausea from the chemo. The anti-nausea medications that they gave me didn’t help. The first day, I was sick and had nausea and diarrhea. Then the next day, it was like my body got used to it and I was fine. They switched to the next one and then I was sick and then my body got used to it.

After chemo, I got mouth sores. A lot of people had it much worse than I did because they were always checking if I had it down my throat so I was very lucky in that capacity, but I did have bad mouth sores.

They gave Biotène, but that didn’t help. I would try and numb my mouth with ice and that helped.

After, you wait for your numbers to get better. They waited for the leukocytes to get up to a certain number. I think 19 was the magic number to release you.

I had a little bit of graft versus host disease. Again, not as bad as most people. My skin itched terribly. I didn’t have any rashes, but my skin felt like I had ants crawling over me all the time. The magic thing was putting coconut oil on my skin, especially right after a shower when the pores are open. It felt so good.

Stacy S.

The other thing worse than the chemo was the immunosuppressive treatment. That’s the worst thing I’ve ever been through in my life.

Stacy S. Be the Match sign up
Recovering from Stem Cell Transplant

I stayed at my mom’s for the first week and then I moved to stay with my brother and sister-in-law.

When the stem cells didn’t graft, they kept on saying, “We’ll keep on checking your blood counts.” My blood counts kept on looking really good for a year or two, except my white blood count because they’ve always been pretty high. They said, “Okay, keep on doing what you’re doing.”

It wasn’t until 2023 that my LDH went through the roof, which is what shows how much scarring is in your bone marrow. You’re supposed to be around 150 and mine’s about over 2,000.

I’m on medication because I have neuropathy up to my knees. I got Addison’s disease so I’m on steroids. I also get migraines so I’m on medication for that.

I’m still on several medications from the stem cell transplant. I take medication right when I wake up, when I go to bed, and twice during the day. I also take supplements.

Post-Stem Cell Transplant

I stopped having transfusions. My last transfusion was in January 2020.

Then I started to lose the stem cells in August 2020.

They said that they wanted to do another stem cell transplant, but I said no. I wasn’t going to do it again, mainly because I’m still living with the side effects from the chemotherapy that I got. The neuropathy and Addison’s disease haven’t gotten better.

Addison’s attacks your adrenal glands and your adrenal glands work in conjunction with your muscles. I have pain in my muscles all the time. Now I have low sodium, low magnesium, and high potassium. At nighttime, I wake up with really bad cramps in my feet, ankles, and shins.

Even if the next stem cell transplant were successful, I would be worried about what would be left over in my body afterward.

Stacy S. with friends

They wanted to do another stem cell transplant, but I said no. I wasn’t going to do it again

Stacy S. with family
Fatigue

I would like to take a nap every single day. There are so many stages of fatigue. Fatigue stage 1 would be when your hemoglobin is at 10 and when it hits 9, you’re dragging, but you can still do stuff.

Then when it hits 7 or 8, which is where I am now, getting out of the chair and going to cook something requires focus. When I drag my sprinkler out, I’m so worn out and breathing heavily that I slump in a chair and think, I have to go to the bathroom. Okay, I’ll do that in about 15 or 20 minutes when I can do that.

I’m not married. I don’t have kids so I’m taking care of myself. It would be really difficult for me to take care of myself if even more of my body is affected by the chemo. Even though the cancer is gone, there would be other things going on. Right now, I can at least get around and take care of myself.

Enlarged Spleen

The normal size is around 11. It shoves up against your stomach and it can make you feel fuller faster. My spleen in December 2016 was 16.5 cm. By the time I had the stem cell transplant, it had gotten up to 22 cm. But now it’s halted at 16. I had a CAT scan in 2022 and it was 16.5.

My oncologist feels my side every single time I go in, which is every two months. He says, “Yeah, it still feels like it’s about that.”

We are planning on having another CT scan before the end of 2023, but it doesn’t seem like it’s getting any bigger.

Fedratinib’s been great. It’s keeping my spleen where it should be. It’s still affecting my hemoglobin so we’ve been waiting for the other one. I heard that it doesn’t affect your hemoglobin as much so that’s what I’m looking for. But it does help with fatigue and helps keep your spleen where it should be.

Stacy S. with dad and mom

Fedratinib’s been great. It’s keeping my spleen where it should be.

Stacy S. with Heaven is for Real author

I asked my oncologist about that a year ago. I mentioned it to him because I got it from the MPN newsletter that I get. I said, “Did you hear about this?” They were talking about a March release from the FDA, then it was pushed to June, and then it was pushed to the fall.

He said, “I’m going to get you on it the second that it gets released,” so we’re definitely on the same page there.

It seems like there’s more awareness of it because there’s people talking about it now. People are getting more into research.

Words of Advice

I could not have gotten through it without my family, my friends, and my church community. There’s no way. When I thought about the transplant, I didn’t worry about the chemo, losing my hair, or being in the hospital.

I dreaded going to the hospital 2 to 3 times a week and having to depend on somebody else to drive me. I lost sleep over that because I did not want to have to put people out like that. It bothered me so much thinking about it.

Accept the help and give help whenever you can and however you can.

My family, my friends, and my community were so giving to do that for me. I can’t thank them enough. I learned humility. It’s the greatest gift I’ve ever, ever, ever received and I’ll never be able to pay them back.

There are people that have such good hearts. Accept the help and give help whenever you can and however you can, even if it’s just to call somebody up and say, “Hey, how are you doing?”

When I wake up every morning, the first thing that I do now before even getting out of bed is meditate on Scripture. Before it was, “No, I’m going to stay in bed. I’m going to sleep ten more minutes.” It’s not my day. It’s His day.

Stacy S.

Stacy S.
Thank you for sharing your story, Stacy!

Inspired by Stacy's story?

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More Myelofibrosis Stories

Stacy S.

Stacy S.



Diagnosis: Myelofibrosis with CALR and ASXL1 mutations
Symptoms: Fatique, cold hands and feet
Treatment: Agrylin (for thrombocythemia), Ruxolitinib (Jakafi), Fedratinib (INREBIC), stem cell transplant
Ruth R. Diagnosis: Myeloproliferative Neoplasms (MPN) Treatment: Chemotherapy, Bone marrow biopsy, clinical trial
Natalia's Myelofibrosis Story
Natalia A. Diagnosis: Myelofibrosis Symptoms: Anemia, fatigue, weakness, shortness of breath Treatment: Phlebotomies, iron pills, blood transfusion

Mary L.



Diagnosis: Myelofibrosis (MPN)
1st Symptoms: Fatigue, extreme dizziness (later diagnosed as vertigo)
Treatment: Pegasys, hydroxyurea (current)
Kristin D.

Kristin D.



Symptoms: None; caught at routine blood work
Treatment: Stem cell transplant
Joseph C. feature profile

Joseph C.



Symptoms: None; caught at routine blood work
Treatment: Clinical trial: VONJO (pacritinib)

Jeremy S.



Diagnosis: Myeloproliferative Neoplasm (MPN), Polycythemia vera (PV) and Chronic Lymphocytic Leukemia (CLL)

Doug A. feature profile

Doug A.



Symptoms: Fatigue
Treatment: ruxolitinib, selinexor (clinical trial)
Cathy T. feature profile

Cathy T.



Diagnosis: Myelofibrosis

Symptoms: None; caught at a routine blood test
Treatment: Stem cell transplant
Andrew SchorrDiagnosis: Myelofibrosis, Chronic Lymphocytic Leukemia (CLL)Treatment: Clinical trial, Gazyva, Jakafi, Increbic, Reblozyl and steroids

Categories
Chemotherapy Diffuse Large B-Cell (DLBCL) methotrexate Non-Hodgkin Lymphoma Patient Stories R-EPOCH Treatments

Harriet’s Diffuse Large B-Cell Lymphoma Story

Harriet’s Diffuse Large B-Cell Lymphoma Story

As an avid exerciser and ballroom dancer, Harriet knew something was wrong when she had difficulty after 2 minutes of walking. This led her to the ER, where she assumed she’d receive fluids because she was dehydrated. Doctors insisted she have a CAT scan of her stomach before sending her off. It was then that they discovered she had a large mass sitting on 3 organs.

Harriet was admitted to the hospital that same day and received biopsies and tests which revealed a non-Hodgkin’s large B-cell lymphoma diagnosis. She began her care at Columbia University Medical Center and started EPOCH chemo to combat, what her doctor called, a very treatable cancer. 

Today, Harriet is cancer-free and the author of Living Well Despite Adversity. She shares her journey with and discusses how she coped with fear and anxiety through visualizations, positive psychology, being outdoors, and creating coping cards, as well as her advice to others on their own cancer journeys.

Harriet shares her DLBCL story
Harriet's DLBCL timeline

After cancer treatment, you’re on a forever healing journey.

Harriet C.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Symptoms & Diagnosis 

Tell us about yourself

My name is Harriet and I’m from Long Island, New York. In terms of what I am beyond a cancer diagnosis – because we’re a lot bigger than our diagnosis and our illness. I actually kept that in mind during my treatment. I’m a clinical social worker and I have a private practice, ironically working with people, going through grief and loss and all types of critical life situations and transitions. 

Before this, I was also a social worker in the school system, working with the little people, the 4-year-olds. For the last 15 years or so, I’ve been working privately, so I have clients. 

I do speaking. I wrote a book a few years ago, Living Well Despite Adversity. I’ve always been in this field with this theme in life. Fast forward to March of 2022, I got my diagnosis of non-Hodgkin’s large B-cell lymphoma.

Harriet experienced stomach pain and weight loss prior to her DLBCL diagnosis
What were your initial symptoms?

A few months before I got diagnosed, I was having stomach issues. I think we all have weak links in our bodies. The stomach has always been my weak link. 20 years ago, I had ulcers and I’ve had reflux. I’ve always had irritable bowel and stuff in my gut, but I’ve always managed it and I don’t do medicine. I was seeing a great integrative doctor, but it would flare up here and there. 

In the fall of ’21, I went for an endoscopy. Everything seemed fine, typical. A little bit of gastritis. I also tested positive for H. pylori. Instead of going on the rigorous antibiotic routine, which is like 12 pills a day for 10 days, my integrative doctor has known me for 20 years and said, “You’ll never tolerate that. I’m going to create a cocktail for you of natural things.” After a month of taking them, I went back for a repeat of the test for H. pylori and it came back negative, so that was wonderful. 

I was still not feeling great, although I went away on vacation and was pushing myself through, I still had energy. I was taking my ballroom dancing classes. I was seeing clients. I was doing everything, but still felt I was losing some weight and I couldn’t afford to lose weight. I’m a very small, thin person. I don’t like to say this, but most people struggle the other way. I try always to gain some weight. I was losing some weight, 2 or 3 pounds. I wasn’t eating a lot, I didn’t have much of an appetite, and my husband would say, “Maybe you should go to the emergency room.” I didn’t want to go to the emergency room. 

Going to the emergency room 

One day we were at Long Beach on the boardwalk walking. I’m an avid walker. We hike, we walk, I’ve been an avid exerciser for years. I couldn’t walk. I had to sit down after 2 minutes. I said, “This isn’t me.” Three days before that, I was doing my ballroom dancing, learning the tango. I have a video I showed the doctor. I said, “Three days ago I was doing a tango. What is this?” 

Doctors discovered a tumor sitting on 3 organs

She said, “You have a large mass growing inside you sitting on 3 organs.”

I was at Long Beach, couldn’t walk, came home, and said, “I probably am dehydrated. Maybe I should go to the hospital for some fluids.” We went to the hospital in the city because I have a connection there. We went to Lenox Hill and the doctor said, “We need to run a CAT scan on your stomach to see if these are the symptoms you had a year ago.”

It was fine. She said, “You don’t have to drink the whole drink. Just do a little to placate me.” I did the CAT scan and I’m not one to do extra stuff medically, but I did it and it was taking a very long time for results. I thought, uh oh, something is not right. Instead of an hour, it was like 3 hours sitting there pacing and going to the bathroom, because when I’m nervous, I have to keep going. 

She finally came out and it was a different [doctor] than the original one who had changed shifts. I saw her face right away. She said, “I don’t even know you. The other doctor at least knew you for 15 minutes. I’m a stranger and I’m giving you very bad news.” I was like, oh my God. She said, “You have a large mass growing inside you sitting on 3 organs.” I was stone-faced. My husband broke down crying like a baby. Even now, I get the chills. I didn’t have any words. She said, “We’re going to admit you. We have to run more tests. This is an initial diagnostic and we have to do biopsies.”

What was your reaction to hearing you have a mass?

I thought to myself at that point, if it’s truly sitting on 3 organs, it’s really big, really fast growing, and I only have a few months to live, I told my husband at 11:00 at night, “You’re going to put me in hospice.” This is the worst news you could possibly get from a complete stranger. I came in for a hydration and this is what it is. That’s how I found out, and then they brought me up to the room. 

It was midnight, completely dark. He had to leave. Spouses weren’t allowed to stay. There was a roommate and I just laid there in bed and my whole life ran through my brain. I said, okay if this is God’s will, I really don’t want to die yet. I also don’t want to suffer, but I’ve had a good life and I went through all the stuff in my life and I said, I can’t be bitter because I’ve had a lot of great stuff, but I would like longer. I don’t really know how I got through the next few days until I actually got the real diagnosis 6 days later. 

Receiving an official cancer diagnosis 

They did biopsies. I apparently was yellow. They said, “Didn’t you see that you were yellow?” I didn’t. I had 2 severely blocked liver bile ducts. So 2 days later they went in, they biopsied, and they put in 2 stents to open it up. I had no clue. That was Sunday. I got the final diagnosis on Saturday. I have no clue how I went through 6 days like that. 

The doctor called me up and said, “I have the best news possible within the cancer world. What you have is called non-Hodgkin’s lymphoma, which is very, very treatable. So if you had to have cancer, this is one of the better ones.” That week, my verdict was changed. I went from thinking that this is it, sitting on 3 large organs, 1 of which is the pancreas. My verdict was changed and I felt better about it. 

Shortly thereafter, I started treatment. I took the recommendation of this doctor who actually is a family member, who was a head of gastro at Lenox Hill for many, many years. He did some quick research and said, “I’m finding you the top person who specializes in this,” and he sent me to this woman [at Columbia]. I did not seek second and third opinions. I went to her.

What you have is called non-Hodgkin’s lymphoma, which is very, very treatable. So if you had to have cancer, this is one of the better ones.

Treatment

What cancer treatments were you on?
She was on EPOCH and methotrexate chemo

I was doing chemo. It’s called EPOCH treatment. I had 6 rounds every 3 weeks. It was intense because it was 5 days of chemo. I did the first round in the hospital. After that, my doctor encouraged me to do outpatient. She said, “You’re a good candidate. You’re basically healthy. You’re in good shape. I want you to try it,” because I was scared to do it at home. She said, “If it doesn’t work out, you’ll do the next 4 in hospital. You have nothing to lose.” So I did. 

They hooked me up to a fanny pack, and for 5 days, I’m hooked up to this chemo drip. In the hospital, it was to the big pole. But once I was home, it was a little fanny pack that I carried around 24/7 for 5 days. Then I would go in 2 of the days that week to change the bag, to get the next one, to get hydration, and to check my blood. Then Friday, at the end of the week, I went in to get unhooked. I actually was hooked up Monday, went in Wednesday, and went back Friday to get unhooked. That was week 1, and then week 2 and 3 I was off, and then we started again. It was every 3 weeks. That was my cycle. 

For every one of those intervals, I had a lumbar puncture, which is not very pleasant, and they injected methotrexate. I think that was more preventative. They wanted it in my central nervous system, my brain. That part was fine. It was like 5 minutes of injecting that once they put the needle in the spine, but that was every cycle.

Did you experience side effects from cancer treatment? 
Harriet took preventive medicine to stop nausea and vomiting

I said to the doctor, “This may sound nutty, in the scheme of things, but I have this terrible fear of nausea and vomiting.” You see all these movies with cancer patients and they are sitting by the toilet. She said, “I’m going to tell you something. Number one, this isn’t one of those that will cause a lot of that. However, you’re going to take the anti-nausea medicine always ahead of time, prophylactically. You’re never going to wait to start to feel it. You’re going to be ahead of the game, even if it means you take it every day or 3 times a day. Whatever it is, you’re not going to wait.” 

I took her advice, and I know it sounds funny. I never threw up once. I mean, one time I had a little tiny episode, but that was a big fear. I laughed when I was telling her. She said, “It’s a lot of people’s fears. You don’t have to laugh. It’s okay.” 

My other big fear was that I am so sensitive and allergic, and I don’t do well with a lot of antibiotics. I have a very sensitive gut. I had to be on a lot of antifungal, antiviral, antibacterial, and miracle of miracles – and I have a lot of miracles in my story – my stomach was fine with all the antibiotics I had to take every day, including very high doses of steroids. Steroids, I wasn’t concerned with, but the antibiotics I was. It was all fine. 

The side effects I had were fatigue, weakness, loss of appetite, and mouth sores. Every time I came to see her for every interval, she’d say, “Are you having joint pain? Are you having neuropathy?” I didn’t, but I did have mouth sores that lasted about a week each cycle.

»MORE: Cancer Treatment Side Effects

How did you cope with mouth sores? 

I drank some smoothies and sucked on ice. I really didn’t have much of an appetite. I can remember eating watermelon. That was the most soothing thing in the world for me was watermelon. I was being treated in the summer, so watermelon was in season. 

Mental Health

Using positive psychology to overcome fear
Harriet discusses mental health and cancer

My biggest fear and my biggest side effect which was bad news, was weight loss. Like I said, I couldn’t afford to lose more weight. I went down to 80 pounds. I lost over 20 pounds. That was not even including the weight loss from before. All I could think was that my body was not going to survive it. It’s going to cave in and I’m going to die just from the treatment. 

By round 4, I was down so low and that’s when my anxiety got really high. How is my body going to withstand more treatments? And it did. I did a lot of self-talk and I was always out in nature when I had strength. Every week on a Sunday, my husband and I went to a nature park. Even if we sat on the bench, and walked a little, that was soothing. 

I was always watering my plants. I teach positive psychology concepts to clients a lot. I’m a student of it. That and logotherapy, which is the therapy of meaning and purpose. I was really trying to input a lot of the stuff that I work with clients on myself. Little bits of joy and pleasure each day. Get up. What are your plans? Go outside. I was sitting out on my deck most of the summer. Even if I didn’t feel well, I would lay there on the lounge. I tried very hard to cope in a way that was helpful to me.

I did a lot of self-talk and I was always out in nature when I had strength.

Did you join any cancer support groups?

As a therapist, people said to me, “You can join a support group.” I said, “No, I cannot.” I lead support groups, women’s groups, and all kinds of stuff. I said, “I can’t be in a group and hear everyone else’s stuff.” That was my intuitive sense. I didn’t think that was going to help me. I had friends who called and said, “This one had what you had and she came through it great.” I said, “You know what? Thank you. I don’t want it. I can’t hear everyone. I have to go through this my way and maybe down the road I will use it, but not right away.” 

I had in my mind this image of a horse with blinders who put one foot in front of the other and plowed through. I never went online to look. I did not want to hear the side effects of medicines, because then I’d have every one of them. I didn’t want to hear stories of people who ended up with a stem cell [transplant] or this [treatment] failed. I never Googled and looked things up online.

»MORE: Read More About Cancer Support

What’s one thing that helped you on your cancer journey?

I wanted to do something a little more creative, so I started doing these cards. Here’s one for example. [Holding up a card with a picture] Here’s the horse with blinders. I wrote on it, and then my husband would laminate it. “A horse with blinders keeping on the straight path, putting one foot in front of the other.” Then I would write on the back my intention. “My intention is to be grateful for this aspect of myself that has served me well.” 

I call these my coping cards, but I will show you one that I did from the beginning. I took this from my first lumbar puncture. The technician who was setting me up said, “What are you holding?” I said, “I’m holding a card.” He must have thought I was nuts, but who cares? You do what’s going to help you. The previous summer, my husband and I had done a national park trip. [Holding up a card with a picture on it] This is Zion National Park and that’s me, small against these humongous mountains. I thought that was really powerful. I wrote “Embracing Strength.” In the back, I wrote, “My intention is to allow the strength of the mountains to support and embrace me in coping with this process.”

I would take some of these cards, and I’ve done tons through the treatment and after the treatment. I enjoyed the process of doing them. I love finding the pictures and what they mean to me and writing on the back. 

Seeing a therapist during and after cancer
She began seeing a therapist on her cancer journey

After cancer treatment, you’re on a forever healing journey.

I also did have a therapist who I was seeing, a new person, but very different. Not the typical therapist I found on one of my favorite blogs called Tiny Buddha. People write guest posts. I’ve submitted a lot also, and this woman wrote this guest post about 3 components. Nature, creativity, and mindfulness. I was reading and thought this really hit home. 

I emailed her and said I’m going to be starting treatment. I really want to engage in something individual, not group, not typical therapy. Something creative that will get me out of myself and get me out of my own head. Something new. We started working together, and to this day, I still work with her because, after cancer treatment, you’re on a forever healing journey. She is amazing. It was a completely different way of dealing with adversity and anxiety through the arts. I mean, I still draw stick figures, but we did these together and it was an amazing process with this woman. That is a big deal that helped me. 

Using visualizations to overcome anxiety

My good friends would say, “You’re never talking about how you feel. You’re talking about all the road stuff and the concrete stuff.” I felt like part of my coping, when I look back is, I shut down from the feeling just to get through it. It was just too much to let myself feel. 

After round 4, when I had lost a lot of weight and I was terrified, the anxiety was sky-high. I reached out to a hospital social worker to have a couple of sessions to talk about it. I’m not saying I know it all, but there was nothing I didn’t really know. I would do my meditation. 

I had a good friend who would lead me on the phone through visualizations of lavender light coming down and healing. I had a lot of visuals, this being one of them, the idea of a field. I love flowers. My field, at that point, was dark because that’s where my lymphoma was. It was brown and muddy. That was my visual. But [sunflowers] stand tall and proud and they face the sun. They were my protectors around that darkness so that none of the secondary infections if you wanted to go there, would enter. These were my visuals. That was a big coping tool also. 

Visualizations helped her cope with her cancer

This friend of mine who actually teaches meditation, went through his own cancer horror stories. I would speak to him a few times a week or he’d say, “Whenever you feel overly anxious, call me. We’ll do a 20-minute visualization.” It was very, very helpful. It would quell some of the anxiety. 

A couple of times I took marijuana edibles. I didn’t like it. It made my head feel like I was in another world, so I stopped. I inputted whatever I could do naturally that would help. Usually, it was being out in beauty.

What would you say to someone facing anxiety over cancer?

Anxiety is future worry. Regret is past upset. The biggest thing I could say is take one day at a time. If I would start at the first round thinking I’m never going to get through 6 rounds, I would have been a basket case. I would put a stop sign in my brain. If I would start to say, how am I going to do it? I would stop myself and say, we’re going to do 1 round. We’re going to get through 1 round. We have smoothies when the sores come and in the third week, you feel better. You’re going to go to that park and this park and that’s it. 

That’s how I really try to do it, 1 round at a time. If I allowed myself to think, oh my God, how am I going to get through it? I would be crippled. At round 4, I did think like that because the weight loss was the highest at that point and that’s when my anxiety levels skyrocketed. It took me a while to manage it, to come back and go through the rest.

The biggest thing I could say is take one day at a time.

»MORE: Cancer and Mental Health 

Follow-Up

What have scans shown post-cancer treatment?

I had my scan on Thursday. I had a scan after the fourth to see if the chemo was working, and it was. Then I had a scan after I finished treatment, September 22nd, at the end of my chemo, after I rang the bell. I love that I rang the bell. That was such a great thing. Thank God it was clear. I had one in March and I just had my recent one a few days ago. I have to have them every 6 months for 2 years after finishing chemo. I think I have 2 more in March and then next September. 

Do you experience scanxiety?

The scanxiety, I know that’s a new word, is high. We all know we’re going to get something. None of us are here forever. Someone could be diagnosed with something else in 6 months. Why does this feel so much scarier? Why once you have a diagnosis, does it feel like you’re forever with an axe over your head? I haven’t figured that one out yet, but it’s there every time I have a stomach thing now. 

I had an episode in the last couple of weeks. My blood work was a little out of whack. Oh, my God, is this it? Thank God it wasn’t. It was clear, but this is where you go. That’s a little hard. I haven’t quite wrapped my head around how it’s so much different than anyone else just because they haven’t had a diagnosis. We’re all waiting our turn, so to speak. Nobody goes through unscathed, but once you have it, it becomes more real that it could be a recurrence.

What did your most recent scan show?

I just got the results Monday, and thank God it’s all clear. I was greatly relieved. I have to say, I was very spoiled. I normally get the results on the same day. I get the PET scan, I do my blood work, and I see my oncologist, but this time I didn’t. I have a Zoom call with her on Friday, but I got the results through the portal. I was nervous to open the portal, but I couldn’t not do it. Thank God, it came out good. 

Harriet's most recent scans have been clear

You don’t just go back to life as it was.

When you get a good result like this, and I would imagine everyone feels like this, you feel a sense of renewal. I get a 6-month reprieve. Six months doesn’t mean I can’t go out and get hit by a bus, but I have a 6-month renewal on life. Now what am I doing? How am I going to show my gratitude? How am I going to pay this forward? My husband thinks I’m nuts. He says, “You’re doing enough.” But I feel so compelled to ask, what am I doing with this good news? You don’t just go back to life as it was.

Reflections 

What are you doing differently since receiving a cancer diagnosis?
She has worked on herself since her cancer diagnosis

I don’t live that much differently. I’ve always lived with a very keen sense of appreciation and enthusiasm. I have a daughter with disabilities. She went through a critical illness for a year. I had other challenges, believe me. I’ve learned a lot of things about how to live life. I look at this and say this is another jumping point, another level. It’s not like suddenly, now I appreciate sunsets or now I appreciate my family. No, I’ve always had this.

The one thing I am doing now differently is more internal work with this therapist, Elizabeth. Visually, I need to clean out the cobwebs in there so that more beautiful flowers can grow. We hold onto a lot of stuff. There’s resentment and anger and this and that, and I’m working much more on my internal landscape emotionally and psychologically. 

When you’re going through it, it’s got to be one tiny step at a time. Don’t think of the long road ahead because it is too overwhelming and anxiety-provoking. You have to be cognitively attuned to one step at a time. Don’t project, how will I do it? Because that’s too anxiety-provoking. 

The other thing is, it’s an opportunity to really go into ourselves, to better ourselves as people and not just to say, I appreciate life more. Absolutely, this will give them more gratitude and appreciation, that’s great. Beyond that is, and it’s not selfish, it’s saying let me let go of some of the old stuff. Let me forgive more, let me be more self-compassionate. Everyone, not just people who had traumatic childhoods. Every single person I believe needs this because we all carry this stuff. 

There’s a book by Bessel van der Kolk, The Body Keeps The Score. We hold onto our stuff, and how do we know if that’s not one of the precipitating factors of growth? We know we all have cancer stuff in our bodies. It’s just when the terrain is right, they explode and grow. I think it behooves us all to work on our hearts. That’s a big deal.

Choosing to see the miracles

I was very cognizant of miracles every step of the way. I always try to look for the silver lining, but not to be Pollyanna-ish. To just embrace that there is a lot of good throughout and I can just give a couple of examples. I have terrible teeth. I had my teeth flare up. I was so anxious about that. My oncologist forbid me, “You cannot go to a dentist. Your immune system is compromised. That’s the biggest place for germs.” I would pray that my teeth would hold until I could go to the dentist. 

In September, after my treatments, the first place I went was the root canal dentist. Who is happy to sit in a dentist’s chair? Nobody except me, I was thrilled. In fact, I took a picture. I was thrilled to be in the dentist’s chair, to finally be working on my awful teeth that served me and held up well. Now every night when I brush my teeth, I say, “You serve me well. I have to do my part in keeping you as well as can be,” even though I’ve lost half my teeth. I’m so cognitive. That was a miracle.

It was a miracle that I went through each cycle without a break. Sometimes people need breaks because they have an infection or because their blood count is too low. I was able to do it each cycle on time. Nothing thwarted it. I hear these stories all the time, “They had to put it off a month…My counts are too low…I ended up in the hospital with this infection, with that infection…” No matter how rough it was, I got through each cycle. Miracle! I could go on.

You have to look at it and say, within the bad, there are these amazing things because it could have been much worse. I was so scared to do my treatment at home. [I feared] it would keep beeping and I would have to run back into the city. Nope. One time it kept beeping and I was due to go back anyways into the city. Because I live on the island, my treatment was at Columbia in the city, so even the bag worked out. It never had glitches in the little fanny pack with the chemo. You need to be intentional about looking for that and then feeling, wow that’s pretty cool.

Thank you for sharing your story with us, Harriet! 
Harriet wishes to give people hope

Thank you for inviting me to come on. It’s a great opportunity and I hope it’s a source of help or inspiration. We always want to give hope to people going through bad stuff like I went through. 

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Categories
Cancers Multiple Myeloma Patient Stories Stem cell transplant Treatments

Sarah’s Multiple Myeloma Story

Sarah’s Multiple Myeloma Story

At 22 years old, Sarah was looking forward to graduating college and beginning her life, but following a malaria diagnosis, she became severely anemic. Many tests later, she was examined for multiple myeloma and tested positive. 

Sarah felt derailed from the track she was on, and while most of her peers were making plans to begin careers and move out of state, she was beginning chemotherapy. 

Rather than processing her diagnosis right away, she tried to live life as normally as possible, listening to doctors but avoiding learning too much about her diagnosis. Years after cancer, she started therapy to process her cancer journey and what life in light of a myeloma diagnosis would look like. 

Eighteen years after receiving her myeloma diagnosis, Sarah shares her multiple myeloma story, including her experience with receiving a stem cell transplant, her side effects from cancer treatment, family planning after cancer, the importance of finding a support group and cancer specialist, and her advice for those on their own cancer journeys.

Sarah shares her multiple myeloma symptoms, diagnosis and treatments

Knowing that a relapse could happen at any time changes the way you appreciate every big decision in life, period.

Sarah F.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Symptoms & Diagnosis 

Tell us about yourself

My name is Sarah. I live in Seattle, Washington. I love the outdoors. I love being with my two kids and my husband. I work as a nurse in the hospital and am a myeloma survivor of 18 years.

What were your first symptoms? 

I was diagnosed with multiple myeloma when I was 22 years old. I was in college. In my senior year of college, I traveled to Kenya for a semester, and at the end of my time there, I got malaria. I ended up very ill in the hospital for about a week and a half. 

When I had recovered fully from that and returned back to the States to finish out my senior year of college, I was feeling recovered but remained severely anemic. My red blood counts were pretty low. Based on that, as a follow-up, they had me go to the hematology clinic here in Seattle where they were testing for all sorts of things. 

I went back to school to finish my senior year, and over the next 6 months, they tested me for whatever they could think of that might cause anemia in a young person. Mono, if there was a strain of malaria that was hanging on, anything that might be causing this. I was on iron supplements. None of it was giving us any reason why this was happening. 

How did you feel during that time? 

I felt really run down, but that was my only symptom. I was very pale, I had bad acne, I was very tired all the time, but I was recovering from malaria. I was very busy with school and activities. 

Receiving a diagnosis 

About 6 months after those initial symptoms, they tested me for multiple myeloma and the blood work came back indicating that that was in fact the case. They immediately sent me to Fred Hutch Cancer Center, which was our local cancer research institute, and they followed up with a bone marrow biopsy that confirmed the diagnosis.

Reacting To A Diagnosis 

Did you ever suspect you had cancer?

No, never. Cancer was not on my radar at all. I had been going to this hematology clinic every couple of weeks for months as they did more tests. I was doing it because the docs were telling me to, but my mind was so focused on everything else that was happening in my life – school and peers, and figuring out what I was going to do after I graduated. 

They said, “Bring somebody with you to this appointment.” I was like, I don’t have time for that. I got the diagnosis, and my doctors told me, “We think this is multiple myeloma which is cancer.” I was by myself, I had no support. I was totally blindsided. It was very memorable. It was not a happy time.

Did you know what multiple myeloma was pre-diagnosis?

No, I’d never heard of it. I think like many people, the first time you hear that word, you think they’re talking about skin cancer, melanoma. It was a very steep learning curve to understand anything about this disease, let alone mentally and emotionally come to terms with the idea that the word cancer is going to be frequently used in relation to me. That was a huge hurdle. 

I think for anybody that will be difficult, for a young person, I didn’t have any peers that had dealt with any severe illnesses at that time. Cancer was something that grandparents had. Cancer was something that you saw on commercials, I didn’t have any image in my mind of what cancer, could be like or might be like for somebody that looked like me.

How did you react to your diagnosis?

I didn’t do a good job of that. I went to all my appointments. I did what I was told. I followed directions as far as taking all my meds and things and didn’t miss an appointment. I wanted to know very little about what was happening to me and I didn’t want to look at research. I got the very basics from my doctors during my appointments and I had very few questions because it was just too overwhelming, and it was very othering. 

»MORE: Reacting to a Cancer Diagnosis

Understanding her multiple myeloma was a learning curve for Sarah

It was a very steep learning curve to understand anything about this disease, let alone mentally and emotionally come to terms with the idea that the word cancer is going to be frequently used in relation to me.

I was diagnosed 2 weeks before my graduation from college. My peer group was talking about careers, moving in with partners, moving out of state, and the next steps in very positive, exciting, and optimistic ways. It felt like all of a sudden, my whole life had been on track with my peer group and now was derailed to this totally different train. I’m on a different railroad track now and don’t know where this is going. I wanted to do everything in my power to get back on the same train track that everyone else was on.

Slowly processing a cancer diagnosis 

I did not process it. I’m very grateful, I was going to college out of state from my family and my mom dropped everything and moved across the country to get an apartment with me during my treatments and be my caregiver, which I was positive I was not going to need but absolutely needed. She did the processing. She did the research. For being 22 and thinking I was a very independent adult, I was very grateful for my mama. She really took care of a lot. 

It took several years after my transplant to go through the steps of processing what a cancer diagnosis was going to mean to me, to my future, and how I was going to process that mentally. There were support groups available to me that I refused to join. I didn’t want to talk to a counselor, I didn’t want to do any online research. I wanted to pretend things were normal.

Treatments

What were your cancer treatment options?

After the diagnosis was confirmed with the bone marrow biopsy, I immediately started oral chemotherapy and steroids. We set up many more tests and appointments with the medical team at the cancer center. One of the initial appointments was going over what my treatment options would be. This was in 2005, so the options were very different than they are today. The myeloma landscape is so much more optimistic today than it was in 2005, thankfully. At the time, my options were pretty limited and none of them sounded good. 

When I had my initial meeting with the doctors, they laid out about 3, maybe 4 different choices of treatment plans, the average life span for each one, and the average life span was about 2 to 4 years. When you’re 22, I mean at any time, that’s miserable. I don’t know how you process that successfully. 

The myeloma landscape is so much more optimistic today than it was in 2005, thankfully.

There were no good options so I went with most of my doctor’s recommendations at the time. I again, wasn’t doing research. There really was a lot less understood about myeloma, and there were many fewer options and I wasn’t looking for them. I chose not to go on a clinical trial and do an allo transplant. I chose to have an auto transplant, stem cells from myself transferred back to myself, which was the standard therapy at the time. And that’s what I did.

»MORE: Chemotherapy FAQs & Patient Stories

Describe your stem cell transplant procedure

For my transplant process, I took oral chemotherapies for about 6 weeks as well as steroids, followed by some pretty intensive chemotherapy, a couple of doses in order to knock down my immune system. They collected my stem cells from my bone marrow and processed those outside of my body. After they collected my stem cells, I received more heavy-duty chemotherapy to completely wipe out my own immune system. 

Then about 10 days after that, I received my transplant stem cells back as part of the autologous stem cell transplant, and that’s considered day 0. Then you wait for 100 days and during that 100 days hope that these stem cells do an adequate job of replacing the immune system that we had chemically removed with cells that don’t include myeloma.

Did you have side effects from cancer treatment?

It’s not comfortable. The hardest part of everything was the social-emotional aspects. The physical part was uncomfortable, but not the overwhelming part of my remembrances. You’re exhausted, you have no immune system. 

»MORE: Cancer Treatment Side Effects

At the peak of my transplant process, my mom suggested I go for a walk because I was feeling depressed. We went outside and I lived on a hill at the time, but we couldn’t make it halfway around the block. I was a healthy 22-year-old and could not walk halfway around the block. It didn’t help with my depression. It made me think, oh my gosh, what’s happening to me? 

Everyone told me this was the hardest part. You’re going to get through this, and they were right. Fatigue was immense. With the heavy-duty chemotherapies, you do have some nausea. When they harvest your stem cells, they give you a medication before they harvest them to make them proliferate and make more of them so they have an easier job harvesting them out of your bone marrow and that causes a lot of bone pain.

The hardest part of everything was the social-emotional aspects. The physical part was uncomfortable, but not the overwhelming part.

For a couple of days, everything aches. You feel yucky, feverish, chilled, and kind of gross. If that’s all it was, I think I would have been okay. I think for me, it was all mental and emotional, and just wondering what was going to happen. If have a lifespan of 2 to 4 years, what am I planning for? How do I have a future? How do I plan for things? How do I get a career? Do I start a career? Do I start a family? Do I, do I not do anything? Do I curl up under a rock and wait for things to get worse? That was circling in my head on repeat, and that was the hardest part.

How much time passed between your symptoms and treatment? 

I first started having anemia symptoms in December or January 2005. I was diagnosed with myeloma in May of 2005 and pretty quickly started on oral chemotherapy. So from May through September, I had a lot of oral chemotherapies and had a little bit of radiation to my arm where I had a big bone lesion. 

Then in October, I started the more intensive part of the transplant cycle involving IV chemotherapy and the stem cell harvest. My transplant was on December 6th, 2005. So from diagnosis in May to transplant was about 6 months. Then they monitor you very closely for the first year or 2 post-transplant, but especially the first 100 days are very critical and your immune system is still baby. 

Describe rebuilding your immune system post-transplant

Just like toddlers bring home every germ, your immune system is like that. You have to be very careful. I wasn’t allowed to eat in restaurants. I had to be careful if anybody had a sniffle, I had to avoid them. The first 100 days were still getting my sea legs and then slowly reintroducing myself back to life after that. 

I was very grateful that, for my experience, I didn’t have any broken bones or compression fractures. I know a lot of myeloma patients are diagnosed in part because of bone fractures, so I did not have to overcome those aspects, which I’m very grateful for. 

Survivorship 

Seeking cancer support
Sarah emphasizes the importance of cancer support

Feeling like I wasn’t so alone in my experiences would have been so helpful.

I felt mostly myself again after about 6 months post-transplant. Once I was starting to feel better, I wanted to pretend it had never happened and I didn’t want to talk about it. I didn’t want to think about it. I wanted to be as normal as possible among my peer group. 

It was about a year and a half or 2 years after my transplant, that I came to a personal crisis moment, where my anxiety was over, What am I doing? If I’m pretending this didn’t happen, then I’m going forward with career choices, and I’m going forward with relationships. But it did happen and I can’t ignore it. I still go to the doctor regularly. I finally saw a counselor and started to process the emotions around, how I recognize cancer as a part of myself, but not as defining myself.

I very much wish that I had been willing to talk to others. There are many wonderful survivors that I have met in the last 18 years, and I so wish that I had been able to find a cohort or felt like I could have reached out just to say, tell me what your experience was like. Tell me what your life is like today. I’m going through this really hard part right now, how did you deal with that? Tell me it’s not going to be like this all the time. 

Feeling like I wasn’t so alone in my experiences would have been so helpful. Those opportunities did exist and I chose not to take them. If my 40-year-old self could talk to my 22-year-old self, I would have a lot of advice. But I think for others, there are a lot of resources out there. There are support groups all over the country. There are several organizations that really focus on multiple myeloma research as well as education.

What support groups are available to myeloma patients?

Learn about your disease and meet with other people. There are Facebook groups, there are other social media outlets, so you don’t have to leave your home. I was the youngest person my doctors had ever treated for multiple myeloma, which was again, very othering. I felt like I wasn’t like the other people in the support group. I wasn’t like any of the people I saw in the waiting room, and that was difficult. 

Fortunately and unfortunately, I’ve met many other young people who have multiple myeloma all over the country, and that has been a wonderful support over the last few years. So if you’re a young person and you want somebody to talk to, reach out. I would love to connect. I do think those resources are there. I think that just knowing that there is someone like you who is going through this and has made it through parts that are feeling hard at the moment, is helpful. It’s the support we all need.

How often did you see your doctor post-transplant?

The frequency of my checkups has varied wildly over the course of the last 18 years. Initially, it was I think every month, then every 2 months, every 3 months, 4 months, and then every 6 months. Certain tests were pushed out to every year and then it was every other year. 

12 years after my diagnosis, a plasmacytoma developed in my nose which required surgery and radiation, and that plasmacytoma is a solid tumor of myeloma cells. While multiple myeloma is in your bone marrow, a plasmacytoma is those same pesky cells, but it’s just one solid collection in one spot. Mine happened to be in my nose. Some people call that a relapse, some don’t, since it wasn’t in my bone marrow. Whatever you call it, that was in 2017 and then my appointment frequency increased again after that.

What treatment did you receive for your plasmacytoma? 

For the plasmacytoma, I had surgery to remove it and then that was followed by a very targeted radiation 5 days a week for 5 weeks, which was a lot. I was trying to work full time and had a 2-year-old at home, but we made it through. I get lots of PET scans regularly, MRIs regularly, and blood work regularly. I’ve been monitoring things very closely since that.

Do you experience scanxiety

It’s not that I am fearful of lying on the exam table. I’m fearful of walking in the building knowing that this might not be an every 6-month visit. This might become a much more regular occurrence. I walk into the building and think about the results I’m going to get in 3 to 5 days, and those results might change everything. 

Every time I go in for that test, every 6 months or every 4 months, it’s the same thought. It used to be more intense, the anxiety of those appointments. Now I distract myself pretty well with the rest of my life. I still have that heart-fluttering feeling when I park the car and I’m walking into the building. I still check my email very closely in the days following to see the results pop up as soon as they’re ready. I don’t have the days of anxiety ahead of time that I did initially.

Fertility

Did you opt for fertility preservation pre-cancer treatment?

When I was diagnosed, before my autologous stem cell transplant, I was asked if I wanted to preserve my fertility by harvesting my eggs. I went to a fertility clinic where we attempted to do that and it was not successful. I’m not sure what the reason for that was, but my cancer docs didn’t want to take the time to pursue that further and felt strongly that it was time to go directly into transplant because of how my disease was progressing. 

It was addressed, maybe not a lot, but it was addressed prior to treatments. I will also say I was 22 and not thinking about children, so I was okay with that. But between IVF, surrogacy, and donors, there are just a lot of options. There are also many ways to start a family. Foster care and adoption are some, and it’s complicated having cancer as your medical history, but it is not impossible. And being a cancer survivor does not make you a bad parent.

»MORE: Fertility After Cancer Diagnosis

Thinking about fertility preservation as a young cancer patient

In my experience, being a young person, one of the biggest challenges post-treatment was talking about fertility. That’s something that, as a young cancer survivor, whatever your cancer, is a big topic of discussion and there’s not a lot of info out there. Post-transplant, post-treatment, that was probably the most stressful topic to hurdle, research, figure out, and navigate.

The options are going to be different depending on each person’s situation, but there are a lot of options out there. Just like cancer treatments are advancing, fertility treatments are advancing as well. There are a lot of people out there who are willing to share their stories. So, again, if people want to reach out to me, I would be more than happy to connect and communicate more about that.

Describe your experience with survivorship 

People say life is a journey. While my transplant is over, I think that the initial treatment step and initial diagnosis step chapter are completed. Cancer is going to be a part of my life forever, and I think as different parts of my life happen, I have to reexamine my life with the lens of that diagnosis always there. 

The wonderful man I was dating when I was diagnosed proposed to me 8 years after we graduated. I had to think really hard, do I want to be married? Do I want to bring somebody else into this nebulous? I don’t know how long I’m going to be around. When we got married we talked about, do we want to have kids? Is that something that I could do? Logistically, can I physically do that? But also, is it responsible to bring someone into this world if I might not be around for their whole life or even a significant part of it? We just don’t know the future.

Reflections

The importance of working with a myeloma specialist 

I was very lucky to live in Seattle. We have a world-renowned cancer center, the Fred Hutch, right here in our city. My initial referral was with them and I was able to be treated from the start by a myeloma specialist. That said, I know many people who that’s not the case. 

My physician at the cancer center works often with doctors in general oncology offices throughout the state and throughout the region providing guidance and second opinions and is always willing to do that. I think most of them are because the research is changing so fast and the treatment options are changing so fast, you really, really need to have somebody who is dedicated directly to studying myeloma and knowing what the best options might be for you.

»MORE: Multiple Myeloma in 2023

How has cancer changed your outlook on life?

Knowing that a relapse could happen at any time changes the way you appreciate every big decision in life, period. I think about saving for a retirement and it’s like, is it worth it? Life insurance, all of these things, it’s like, what am I thinking about in these choices? 

Cancer is going to be a part of my life forever, and I think as different parts of my life happen, I have to reexamine my life with the lens of that diagnosis always there.

To be really honest with you, I waffle back and forth a lot between super optimistic and super pessimistic. I try not to make any decision off the cuff and I let my emotions go through all of those positive and negative feelings and have very open communication with my partner. We talk optimistically, but realistically as well. You’re always processing. There’s always something else to think about, I don’t think it’s all negative. 

I have a lot of fears about missing out on my kid’s life as they get older. I also think that I am blessed to use the lens of a cancer diagnosis to value each and every day and each and every moment with them in a way that I don’t know that I would if I hadn’t had that experience with cancer. It’s not all bad. I feel closer to people who have been with me through some of those hard times. I have wonderful relationships. I have a great support team. I’m able to value the little things and maybe not get as upset about the small stuff as I think I would be if this wasn’t part of my life.

What advice do you have for myeloma patients? 

Myeloma is a very different disease for different people and your experience is your own. Reach out for support. There are a lot of people out there who are going through similar situations and everyone needs a friend. Not everybody’s situation is going to be the same. 

Sarah shares her advice for multiple myeloma patients

I have a lot of fears about missing out on my kid’s life as they get older. I also think that I am blessed to use the lens of a cancer diagnosis to value each and every day and each and every moment with them in a way that I don’t know that I would if I hadn’t had that experience with cancer.

Find a really good doctor. If you don’t, find a second opinion. Make sure you have a myeloma expert helping to guide your care. You don’t have to have a myeloma expert as your primary doctor, but have them as a second opinion. Have them help and advise because they’re the ones who know the newest research and what might work best for somebody with your demographics or your type of myeloma. It’s okay to be scared, it’s okay to be vulnerable, and it’s okay to ask for help, which was the hardest part for me.

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