Interviewed by: Alexis Moberger Edited by: Chris Sanchez
Rachel was diagnosed with Stage 4 Hodgkin lymphoma at age 44. After initial misdiagnosis including eczema and other conditions, her symptoms progressed and her cancer was finally diagnosed correctly. She was initially hesitant to undergo chemotherapy, but upon learning that she would have approximately 6 months to live without it, and after consulting her family and other specialists, she agreed to undergo treatment. She was then put on chemotherapy for 6 months.
Rachel is from Almondsbury in the UK. Having been trained in musical theater, she has taught singing and drama in theater schools and has run her own business teaching singing for the better part of a decade.
Rachel’s cancer is now in remission. She shares her story with us–including her key challenges, frustrations, and struggles, and some important lessons and takeaways–in the hope that other cancer patients can benefit from and be inspired by her experience.
In addition to Rachel’s narrative, The Patient Story offers a diverse collection of Hodgkin lymphoma stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.
I feel really positive. Because I’ve realized that my life was saved for a reason. And that starts with getting my story out there.
Pre-diagnosis
History of Illness
Long before my diagnosis, I was ill for quite a while, and I suspect that I may actually have had cancer even then.
In my 20s and 30s, I was a lot heavier. Over the years, I started to lose weight very gradually and very subtly. Since everybody knows that middle-aged women tend to gain weight as they get older rather than the reverse, this was a bit of a red flag.
I have a son. When I was pregnant with him back then, I was really ill. I had obstetric cholestasis. I found out through research that pregnant women who have obstetric status in pregnancy are at greater risk of developing cancer.
At the time, I also experienced severe nausea and terrible itching on my palms, the soles of my feet, and so on. I was induced and my son was born early because there was a risk of stillbirth. After giving birth, I lost a lot of weight quite quickly—and I do know that a lot of women take a while to regain their shape after giving birth.
Aside from my experience during pregnancy, I was always suffering from diseases like respiratory tract infections—tonsillitis, bronchitis, a whole heap of stuff—one after the other. Whatever was going around, I caught it.
Initial Symptoms
I knew that something was really, really wrong in the spring of 2020.
I developed a rash on my arm and I went to see the doctors. But COVID had just arrived and the doctors had far more interesting things to deal with.
My frustration was mounting because I knew that there was something really, really wrong and no one can get to the bottom of it.
Diagnosis
First Appointments, Misdiagnoses, and Progression
The doctors said it was eczema and I said I didn’t get eczema that way, but they insisted.
The rash went away, but in the spring of 2022, it returned with a vengeance. It was worse than before. The rash was so extreme that I broke the skin several times by scratching and it kept me up at night. Yet they kept saying it was eczema.
I also suffered from dizziness and nosebleeds on various occasions. Dizziness while putting my washing out on the line, staying in the kitchen, and other times; recurring nosebleeds that may have coincided with my menstrual cycle and even took place around the time I miscarried.
One lump turned to 2 then 3 then 4, and before I knew it, my legs were all covered in lumps. My rash had spread to cover the whole of my body save for my face. It was so intensely itchy that I couldn’t sleep and had to keep spreading cooling cream on myself.
The doctor suspected that I had tuberculosis or an autoimmune condition and sent me to have a chest X-ray. I was thinking he was going completely down the wrong path, but at this point, I was absolutely desperate so I agreed.
Getting the Correct Diagnosis
I didn’t think the chest X-ray would reveal anything, but it actually showed a shadow on my lungs.
I was fast-tracked to hematology where I was sent for a CT scan, which revealed that the lymph nodes in my chest and neck were swollen.
A needle biopsy of one of the lymph nodes came back as what they thought was stage 3 Hodgkin’s lymphoma.
Finally, the doctors ordered a full body PET scan, which revealed that what I actually had was stage 4 Hodgkin’s lymphoma and that it had started to creep into the edge of my lungs.
I asked the doctor about chemotherapy. Life had been pretty rubbish up to this point and I was on the fence about whether to take it or not. If I didn’t take the chemo, I asked him how long I had. He said six months.
Treatment
Considerations
I behaved a little bit like a child when I got the diagnosis. I felt completely boxed into a corner like I had no options aside from either chemo or death. What I did know about chemo scared the living daylights out of me.
I didn’t want to lose my hair. I’ve always had really good hair and I’d literally die rather than lose my hair.
There was also fertility. I’m really, really grateful for my son, but I’ve always longed for another child. I’ve suffered two miscarriages. I don’t qualify for egg freezing because in the UK, if you have one child, you’re already a parent and are automatically disqualified from egg freezing.
I talked it through a lot with my husband, my sister-in-law, a psychologist, nutritionist, physiotherapist, and clinical nurse specialists and decided to get on with it, even though my first session on October 4, 2022, very sadly coincided with my parents’ golden wedding anniversary.
I behaved a little bit like a child when I got the diagnosis. I felt completely boxed into a corner, like I had no options aside from either chemo or death.
ABVD Chemotherapy and Medicines
My chemotherapy was a cycle made up of two lots of infusions.
My treatment took place every two weeks. I would go in and have these IV medicines put in my PICC line then I would have my chemo on the same day as well. My first chemo session was made up of the PICC line going in and my first lot of chemo.
My sessions were once every two weeks for six months. Every other week, I would have a pre-chemo appointment to make sure that I was well enough to undergo treatment.
By the way, it wasn’t just IV drugs. Every day I had to take medicine at home as well. I used to load my pill box and take pills at home: steroids, dexamethasone, and then antivirals, acyclovir.
Side Effects of Chemotherapy
I had loads of side effects. The doctor said I had pretty much every side effect under the sun.
The first time was the worst, definitely. I started feeling unwell in the chemo chair. When I got home, it knocked me out. For days afterward, my self-care went downhill. I didn’t have enough energy to do anything apart from go to the toilet and brush my teeth—and even that felt like climbing a mountain.
I felt very, very cold when the chemo went in. My whole body was really, really cold. I immediately started bloating like a balloon. I could feel my stomach swelling when the IV drugs were going in. I also immediately started feeling quite nauseous.
I would come home after treatment, change into my pajamas, and get into bed feeling very nauseous and very bloated. I’d have a lot of stomach pain, and I’d lie there and wait for it to ease off and get a little bit better.
I’d have a lot of little pain in my legs, like a burning sensation, from fatigue. My legs would sort of give way on me. I literally felt like, How on earth am I going to get to bed? The fatigue was just insane.
I’d wake up in the morning and feel really thirsty straight away. I suffered from hemorrhoids, constipation, ulcers, cuts, and angular colitis. Cuts at the corner of my mouth. The hemorrhoid pain was absolutely the worst.
All that being said, I’d never been hospitalized or even had a temperature.
Dealing With the Side Effects
Soup, fresh air, and hugs helped with the side effects. Basically, distracting myself, like with things to watch. A lot of comfort-watching—whatever made me feel good. Whatever was funny, lighthearted, or anything familiar.
It was literally pure survival mode, anything just to get me through.
Remission
Apart from the side effects, everything went amazingly well in terms of progress.
Two cycles in, I had a PET scan that showed that I’d had a complete metabolic response. The doctors said, “We couldn’t ask for better than that.”
Everything in me wanted to stop. Surely I’m cured. But they said it doesn’t really work that way so I had to undergo about four more months of chemo.
Eventually, at the end of the chemotherapy, about six weeks after it stopped, I had another PET scan that showed that I’d had a complete response.
All the scans after chemo showed the best possible results.
Hang in there. Be patient because your emotions do catch up. Just give them time.
Processing the News
When I was told I had the all-clear, I didn’t feel a single emotion. I didn’t feel shocked, sad, confused—not even happy. It wasn’t as if I’d reached the pot of gold at the end of the rainbow.
I think it was like that for different reasons. My life had been a struggle before I was a cancer patient and now that my cancer’s been dealt with, all my concerns were still there. I had to step back into it and continue with it.
Eventually, I felt really bad and guilty about this because there are people out there who want to live. I felt guilty that I didn’t feel happy.
The lady I spoke with was ever so kind. She said, “You’re perfectly within your rights to feel exactly what you’re feeling. No judgment. No guilt. Whatever you’re feeling, even if you’re feeling nothing, that’s completely okay.” It was really lovely to connect with someone and hear those words.
I also found that having access to mental health services was absolutely necessary in terms of processing and moving forward. I had access to a psychologist through the UK National Health System. We determined that not everything that I talked about was related to cancer.
There were things we worked through that were issues before I had cancer, as well as those that will happen in the future. Honestly, I don’t think that my mental health would be in a good state right now if I hadn’t had access to a mental health professional.
Now, I feel really positive. Because I’ve realized that my life was saved for a reason. And that starts with getting my story out there.
Although initially, I wanted to look into medical negligence. I do believe my cancer could have been found years earlier with all my recurrent illnesses. I made a formal complaint in terms of the very late diagnosis of my cancer. I do plan to tell my story as well as complain. Now the complaint’s been dealt with.
Cancer is a life-changing experience. I’ve heard it said that if you have cancer, you’re never the same person you were before.
I think that if you have cancer and you’re still here to tell the tale, you’re still here for a reason.
Realizations and Takeaways
To cancer patients and caregivers who may also be feeling numb like I did, I’d say, hang in there. Be patient because your emotions do catch up. Just give them time.
I also want to say that my faith helped me. I’m a Christian and I feel that it’s as if God had His hand over the cancer, hovering over the edge of my lungs, and caught it before it could enter a major organ. Now I can say that it was not my time to go, even though I felt it had been my time for a long time.
Your body is incredibly clever at telling you that something is wrong. I knew the rash was not eczema. I knew something was really out of balance and I shouldn’t leave it alone. If I had left it alone, I wouldn’t be here today.
I kept going back to the doctor because intuitively, I knew something was wrong. I think the body tells you before the brain does, and the brain catches up. It’s just that we don’t really stop to listen.
Cancer is a life-changing experience. I’ve heard it said that if you have cancer, you’re never the same person you were before. I feel like I had a near-death experience insofar as if my cancer hadn’t been found, I would have died. I think that if you have cancer and you’re still here to tell the tale, you’re still here for a reason.
It’s a chance to regroup, to really look at your values, what’s important to you, and what you want your future to look like, considering you nearly didn’t have a future. What is really important and what isn’t so important: family, life, work, and faith.
Cancer details: Most common and most treatable form of Hodgkin lymphoma 1st Symptoms: Shortness of breath Treatment: 3 rounds (6 infusions) of ABVD chemo
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)
Shortly after gallbladder removal, Keith developed what felt like gallbladder pain. His wife encouraged him to go to the ER where he received a CT scan that revealed a mass in his colon. After removing the mass and some lymph nodes, a biopsy showed Keith had stage 4 colorectal cancer.
As a husband and a father of two boys, Keith discusses the impact his diagnosis has had on his outlook and life and how he stopped working to prioritize time spent with his sons.
Now on his third line of treatment, Keith discusses cancer support groups, chemotherapy, treatment side effects, mental health, how he is considering a double lung transplant, the importance of being a patient advocate, and his advice for others on their own cancer journeys.
I’m Keith. I’m 43 years old. My hobby is that I love to be outside kayaking, hiking, and walking. I’m a Corvette enthusiast who’s working on my car and hanging out with my dogs. Those are usually the 2 that hang out with me while my kids are at school and one might poke his head in. He’s a very large Great Dane. My wife, kids, and I like to travel. We like to do a lot of international travel and domestic as well.
When did your symptoms first occur?
Early in the year 2021, I had my gallbladder removed. Then in May, I started to have abdominal pain again, very similar to when I had gallbladder issues.
I was coaching Little League baseball the night of May 4th, 2021. As the night progressed, the abdominal pain continued to get a little worse, so much so that my wife forced me to the hospital in the middle of the night.
Getting emergency surgery
I went to the emergency room, and they did a quick CT scan and found a mass in my colon. They did a couple of other tests like blood work and stuff, and they said that they were going to be prepping me for emergency surgery because they wanted to get that mass out.
As they did more digging and research, they also found several lymph nodes that were impacted as well as 4 lesions on my liver at that time. So that’s a whirlwind of how we got started.
I went through that emergency surgery that night and was in the hospital for about 11 days. A couple of days after my surgery, I became septic so I had a lot of issues health-wise. We weren’t sure how that was going to play out, but I was actually able to make it out of the hospital the day before my wedding anniversary, which was nice. I started chemo shortly thereafter.
I went to the emergency room, and they did a quick CT scan and found a mass in my colon.
Did you have other symptoms besides abdominal pain?
No, nothing. Even what would have been 6 months before that, I did a triathlon. No issues. I’m not necessarily saying I’m the most healthy person in the world, but I definitely didn’t consider myself unhealthy by any stretch of the imagination.
What did doctors say about your minimal symptoms?
I was told that 41 was very young to be diagnosed with this. They mentioned that they’re seeing more and more of this in younger patients being diagnosed very late stage. Some of the traditional symptoms are rectal bleeding and abdominal discomfort. But for me, I really didn’t have any of that, other than the gallbladder pain that came back.
I thought it was strange because you shouldn’t have pain in an organ that was removed. I thought initially it was maybe some type of surgery complication that turned out to not be a surgery complication at all. It was a whole other issue.
I was told that 41 was very young to be diagnosed with this. They mentioned that they’re seeing more and more of this in younger patients being diagnosed very late stage.
It was tough. I went to the hospital during COVID times, so nobody else could come with me. I went by myself. I was in the emergency room by myself and had to make a call to my wife that they found a mass. Even at that point, I still really didn’t comprehend or grasp what the situation was. I was thinking, okay, they found something, they got to get it out and then I can go home and move on with life. That wasn’t the case.
It was very shocking initially and I was almost numb. It wasn’t until after the surgery when I started to recover in the hospital that my situation and the diagnosis became real.
The more doctors that I spoke to while I was in the hospital didn’t necessarily paint a real great picture of the survivability, how long I would be around, and all those things. Luckily, I have a great oncologist I met several weeks after all that, which helped put things into perspective a little bit, and while obviously still serious, there’s at least hope.
I still really didn’t comprehend or grasp what the situation was. I was thinking, okay, they found something, they got to get it out and then I can go home and move on with life. That wasn’t the case.
What cancer treatment options were you given?
After surgery recovery, I met with my oncologist about 4 weeks after my initial diagnosis and surgery. We walked through traditional first-line chemotherapy FOLFOX, which is a pretty aggressive first-line treatment and pretty standard care for most of these patients. We did add Avastin into the mix as well to hit it harder, which is probably the best way to describe it.
We talked through side effects and what to expect over these 6 months. The intent was curative intent and to get me to a position where I could be surgical in regards to the liver situation.
Undergoing liver surgery and chemo
We went through 4 months of FOLFOX before I was able to have my liver surgery. They did a liver resection in October of 2021 and took out about 30% of my liver. The good news is most of the lesions that were in the liver were necrotic. Chemotherapy, knock on wood, had done its job, and then I recovered from that surgery.
They did ask me to complete 4 additional rounds of clean-up chemo just to make sure there wasn’t anything lingering out there that didn’t show up on scans. I left the hospital in October extremely excited. You get this diagnosis 4 months before and it’s a pretty dark picture, and to be told that we got it all? In my mind, I beat it and we’re moving on with life. We can go back to normal.
About 2 months after that, a follow-up CT scan showed numerous spots in my lungs. It had hid for a little while and then metastasized further into the lungs which we’re still working on treating today.
About 2 months after that, a follow-up CT scan showed numerous spots in my lungs. It had hid for a little while and then metastasized further into the lungs which we’re still working on treating today.
Of all the chemo that I’ve been on, that first-line treatment was pretty rough. FOLFOX is not for the faint of heart. I had a lot of fatigue and nausea. At one point, I did have a blood clot that they deemed Avastin probably caused. That was a little scary. I had a blood clot that started in my leg and moved into my lungs. We were able to work through that and get that resolved.
Mental Health
The physical and mental toll of cancer
I did seek out some professional help from a therapist’s standpoint, and that helped me tremendously.
I looked at it as 2 things. There’s the physical piece – there’s a lot of medications and vitamin supplements and things like that I was taking to help. But I think the first year of this was more challenging on the mental side if I’m being honest. It was pretty dark for a while because the first thing most people do is grab their cell phone and computer and start searching for your disease and they want to learn more about it.
The prognosis for stage 4 colon cancer patients is not really great. I’ve got 2 young boys and my wife, we have a great family. To think about losing all that in a very short window is very humbling. I went through a pretty dark depression phase where I lost hope. This was before treatment really started and things started to actually show some progress.
I did seek out some professional help from a therapist’s standpoint, and that helped me tremendously. Not only to be able to take the feelings that I’m having at different points throughout the day or the week or whatever and work through and process those but to get me centered and present instead of sheltering away.
Breaking the stigma of men expressing their emotions
I think that the traditional model of men don’t cry, keep your feelings in, walk it off, and rub some dirt on it is just culture. My wife and I had a lot of conversations about depression and the diagnosis. It’s great to be able to talk to friends and family, but there’s a note that a professional can bring to those conversations that friends and family can’t.
Friends and family will tell you, “You got this, you’re going to be okay, we’re going to get through all those things,” and it’s all with good intentions. But the professional side will actually take you through how to deal with the dark stuff, how to work through those feelings, how to deal with anxiety, and how to deal with depression so you can actually enjoy life instead of just living secluded and isolated.
I did find a couple of groups shortly after my diagnosis that really helped me with peer-to-peer, patient-to-patient, sharing stories, hope, avoiding isolation, and being able to talk to people who truly understood what I was going through.
Talking to children about a cancer diagnosis
Honestly, as a father, that was the hardest conversation I’ve ever had. My wife and I talked a lot about this before and what approach we wanted to take. At the time, 2.5 years ago, they would have been 9 and 11. You think 9 and 11-year-olds are pretty young, but kids are smart, especially with technology at their fingertips. They’re able to find the answers if you don’t provide them, so we made the decision that we were going to be age-appropriate, open, and honest with my diagnosis, my condition, and how life is going to look for a while.
I look back on that and I’m really glad we made that decision because I’ve met other folks that are going through similar things that chose a different option. Every family is different and everybody’s decision on how they include their family in these conversations is something very personal. But I’ve also seen a lot of family and friends be torn apart simply because they felt things were hidden from them.
We made the decision that we were going to be age-appropriate, open, and honest with my diagnosis, my condition, and how life is going to look for a while.
I wanted that to be the voice, I wanted them to feel like they’re a part of this story and what we’re going through, and not dismissed. Even 2.5 years into this, I still double down and think that was the right decision for us.
As for my parents and in-laws, we needed a lot of help right in the beginning. This was right at the beginning of summer break when all this happened. My kids are extremely active in sports and activities. Being out of the mix for a while, recovering from surgery, we needed a lot of help shuttling kids here and there and just dealing with life. It doesn’t stop just because somebody gets sick.
We were able to have a lot of conversations and tough conversations, but at the same time, as family does, there’s a lot of hope, positivity, and support that comes with those conversations.
Metastasis
Blood work is pretty traditional and then we also used ctDNA testing to monitor residual disease and that’s actually what gave us the smoke alarm…It posted positive.
How long after your diagnosis did you learn your cancer metastasized?
About 2 months. It would have been January or February 2022 till March or April that I didn’t have residual disease and nothing showed up on the scans. Then we started using a couple of different tools to monitor my disease. Blood work is pretty traditional and then we also used ctDNA testing to monitor residual disease and that’s actually what gave us the smoke alarm. It was a test called Signatera, which is a molecular test for ctDNA. It posted positive.
How did you react to your cancer recurrence?
It sparked a flurry of emotions and feelings that it’s back. Because of that positive test, my medical team ordered scans and so forth. At first, nothing showed up, so we were at this weird place where we knew something was there. We know something’s brewing, but we just can’t see it and we don’t know where it is.
What treatment did you opt for with your recurrence?
I’m really lucky in regard to the medical team that I have. My oncologist and I walked through different options. We could do nothing and wait to see what pops up and deal with it then. Or, what is not very common, is my oncologist actually offered me to go ahead and start back on treatment again knowing that something’s there, it’s going to show up, we just don’t know when. While chemotherapy is not fun, we opted to go ahead and start treatment to be as aggressive as we possibly could. About a month after that, they did a follow-up CT and then found 14 spots on both sides of my lungs.
Not knowing where the recurrence was at first, was chemotherapy the right choice?
I think if anything, it bought me time to process and plan with my team what approach we wanted to take. The treatment that I started then would have been the treatment that I would have started if we waited regardless. I know there’s no real way of knowing, but in my heart, I believe it probably saved it from popping up in other places as well. While 14 spots in your lungs are not great, it could have been worse. I think that some of those tools that we’ve used put us in a position to get ahead of it to try to treat it the best we could.
What chemo were you on post-recurrence?
I know there’s no real way of knowing, but in my heart, I believe it probably saved it from popping up in other places as well.
My second line treatment was called XELIRI, which is Xeloda Irinotecan, and then we kept Avastin in the mix as well. I was on that cocktail for about a year and a half.
There were side effects, so still some fatigue and some nausea, but the ability to bounce back was so much faster. When I was on my first-line treatment with Folfox, after that infusion, I would be out of commission for 4 or 5 days in a row and miserable. The worst flu possible is the best way to describe it.
Then when I moved to the second-line treatment, the day after infusion was pretty rough. Then you started to come out of it pretty quickly and that cycle was every 3 weeks. I actually got an extra week of good feeling into that mix too. While again, no chemo is great, it definitely was good from a quality-of-life perspective.
Staying on a curative path
We had that tougher conversation around curative intent versus palliative care, and I’m still on a curative path. I’m not ready to succumb to this is going to be my life forever. I know that seems kind of silly at times, but I think for me mentally, I need to know that curative is still a path.
I’ve also learned I have to accept stability as positive.
Hearing that was obviously frustrating, it was discouraging. But I feel like we were in the right place to get started when we did. As I said, that cocktail worked for about a year and a half.
What we started to see, and this was just a couple of months ago was that some of those numbers like my Signatera test started to increase, but my scans still showed stability. Again, maybe I’m an oddball, but we’re in this weird situation where we know the chemo that I’m on wasn’t reducing anymore, but it was keeping things stable. I’ve also learned I have to accept stability as positive.
But we had that conversation around if this drug is no longer shrinking but is holding it stable, is it best to stay on this until it stops working altogether or do we want to go ahead and fast forward a little bit and jump on third-line treatment? The path that we’ve always taken is the most aggressive path and the best probable outcome. We made the decision to go ahead and jump ship and start third-line treatment, which started about a month and a half ago.
What cancer treatment are you on currently?
The third line for me is Vectibix, which is an EGFR inhibitor along with Irinotecan. So one of the old drugs and one of the new drugs and that’s where this lovely rash comes from, is from the Vectibix.
How long will you be on your current treatment?
The good news is that I have found options post this line of treatment. Exiting standard of care, there are a couple of clinical trials that I’ve already looked into and tentatively been approved for.
Until it stops working. I love being the oddball. All the spots in my lungs are very small and they’re all under a centimeter. So for me to get into any clinical trials, I don’t qualify because they’re not big enough to biopsy. I’m in that weird situation of, you almost want it to grow to be able to qualify for trials and things like that. But mentally, I just can’t accept that. I’m just going to continue to beat it down until I can’t beat it down anymore, so it’s indefinite right now.
The good news is that I have found options post this line of treatment. Exiting standard of care, there are a couple of clinical trials that I’ve already looked into and tentatively been approved for. It’s a pretty aggressive opportunity that’s being tested in an NCI center close to me, it’s a double lung transplant for metastatic cancer patients. That tumor board has already approved me, but I have to exhaust the traditional standard of care, which is the current treatment that I’m on now.
Reflections
There are plenty more options out there as long as you’re willing to do the research and find them and go wherever it takes to get whatever that treatment may be.
I don’t want to take anything away from my team because they are great, but at the same time, there’s a realization that you’re not their only patient. They’re not going to invest 40 hours a week looking into different options for you.
I’ve learned a lot through a couple of advocacy groups that I’m a part of that have really helped me understand the value of second opinions. For me, second, third, fourth, fifth, sixth, and seventh opinions. I’ve traveled quite a bit to get a better understanding of options that are out there and things that are at different cancer centers I can’t get locally. That has helped me open up some doors and continue to build that hope strategy around, there’s something else after this instead of just saying, this is the last standard of care line. This is it.
There are plenty more options out there as long as you’re willing to do the research and find them and go wherever it takes to get whatever that treatment may be.
Doing your own research to understand your options
I think a big misunderstanding, and it is not the fault of your local oncologists and teams, I think it’s just how the systems are built. You have to be a component of your care and you have to be an advocate of your care. That also comes with education. I had this misunderstanding that I would just go to my oncologist and they would take care of everything and they would prescribe, “Here’s what you need to do to get rid of X, Y, and Z,” and then things would be great.
I can’t stress enough, exhaust your options in regard to opinions. There are never too many opinions and too many places to visit to get ideas.
There are limitations to every cancer center that’s out there. Some specialize in the cancer you have and some don’t. For me, knowing that I’m not going to get a list of trials that are across the United States for me to look into. They provide some that they’re familiar with, but ultimately, a lot of that research lies on the patient along with opinions. I can’t stress enough, exhaust your options in regard to opinions. There are never too many opinions and too many places to visit to get ideas.
How often are your scans?
Because I’m still on active treatment, I see my local team every 2 weeks and we complete scans every 3 months. My next scan will probably be at the end of September. That’ll be the first true telltale sign of how this new line is actually working. My hope is it can get me to a point where surgery would be an option from a lung standpoint, but it’s got to do some good work.
I will say that the positive is that, I just had my third, but after 2 rounds of this, one of the tumor markers in my blood is the second lowest it’s ever been. I’m hoping that correlates in September to good news on a scan, but we’ll see when we get there.
Do you experience scanxiety?
Let yourself be surprised when there’s good news and actually enjoy that.
It was a lot worse in the beginning than it is now, but don’t get me wrong, there’s still scanxiety. I think My Chart is a blessing and a curse at times because you have access to those scans as soon as they’re available. Sometimes I see them before my oncologist. When it’s a good scan, that’s great, because then you can high 5 and move on about the day. It’s when it’s not that the panic sets in – do I need to call, when are they going to see it, what’s our next step?
How I’ve learned to deal with it is you just have to accept it. That sounds really weird, but you have to accept the situation you’re in. You’re going to get good news and you’re going to get bad news, and more than likely, you’re going to get bad news more than good news. With that mindset, you’re not expecting to go in and everything’s going to be great and the scans are going to be clear.
Don’t set yourself up for something that’s not realistic. It helps a ton. Let yourself be surprised when there’s good news and actually enjoy that. When it’s not, learning how to process that, going back to see a professional that can help with tools and tips and tricks to work through some of those things has helped me post-scan to be able to control some of those things.
Do you still work?
I stopped working after my diagnosis. We were lucky enough to be in a situation where I could step away from work and we could live our lives as normally as we had. I know that is not the situation for a lot of folks, so I don’t take that lightly.
What it has allowed me to do is spend my time how I want to spend it and prioritize my time differently than I did in the past. I think with a lot of folks, work is always this big rock that you always have to spend time on. Then, you get home and you got kid’s activities and all these different things. It just consumes the day. With me not having to work, I’ve been able to spend time with my kids that I never would have had the ability to do.
One of the things that I’m most grateful for is the last 2 summers, our kids would go to some type of camp or care when I was working. But since I’ve been home, we didn’t have to do that. I was able to stay with the boys both summers and they coined the term Summer of Dad. What they would do is they would take a plain old calendar, and just start filling it with all these activities that they would want to do throughout the summer break. My job was to find ways to get all those things to happen over the course of 65 days or 80 days or whatever it is.
It has been so much fun and so rewarding to spend that time with my kids. My phone’s not ringing. I don’t have to worry about email. I don’t have to worry about the grind of a traditional job. I’m able to spend my time how I want.
Which cancer support groups do you recommend?
I would be remiss if I didn’t mention a couple of groups that helped me tremendously through this diagnosis. One of those is colon cancer-specific. It’s a group called ColonTown, a nonprofit organization that focuses on patient and caregiver-led support, education, and being able to, share stories and speak to people who are going through things that you’re actually going through.
The other group would be Man Up To Cancer. This is an all-cancer type group, but specifically for men. We touched a little bit earlier on that stigma of male mental health, isolation, and those types of things. That group is phenomenal at helping solve that gap and really providing support and help for men specifically to not isolate during these times and how critical it is to not do that.
As a cancer patient being able to find the people who are going through this with you, it’s amazing. The connections you can make with people, whether it be online or in-person, that are going through things. It’s almost a bond that’s stronger than any relationship I’ve had with people I’ve known for years. I don’t know if it’s a trauma response or what it is, but it’s interesting to be able to surround yourself with like-minded people in similar situations. You just feel that weight gets taken off your shoulders to some extent when you can share and know that people get it.
What advice do you have for others on a cancer journey?
Don’t give up hope, number one. Absolutely educate yourself on your disease and be an advocate for yourself along with your care team. Be a part of those conversations. Don’t just let those conversations be done to you and take your life back.
To say I’m not scared of death is an extreme understatement. I’m actually terrified of that, but can’t control when that’s going to happen. It’s all in science’s hands at this point. What I don’t want to do if I get to that point, is look back and say I’ve wasted the last year, 2 years, 3 years, whatever that is, worrying and not living my life. That will be my biggest regret as a father, a husband, and just as a human.
Everybody has a stopwatch above their head, and some might be shorter than others, but I’m going to maximize every day I can and I’m going to do whatever I can to enjoy it, whether that be enjoying my own hobbies or spending time with my friends and family. I’m not going to let it take that part of my life away.
Symptoms: Found the cancer as a result of family history & early colonoscopy; discovered Lynch Syndrome after genetic testing Treatment: Partial colectomy
Danielle’s Stage 1 Classical Hodgkin’s Lymphoma Story
Interviewed by:
Alexis Moberger
Being a health-focused family, Danielle and her family were shocked to discover Danielle’s mother had a rare blood cancer known as myelofibrosis. To get a stem cell transplant, her mother needed a donor, and tests showed Danielle was a good match. Danielle needed an x-ray to confirm she was healthy enough to be a donor. The x-ray revealed a large tumor in her chest, catalyzing her own journey with cancer. She was diagnosed with stage 1 classical Hodgkin’s lymphoma.
After landing her dream and preparing to step into a new career, at 25, Danielle wasn’t ready to be held back from beginning her life. Still, she found herself adjusting plans to account for various cancer treatments, resulting side effects, and a cancer recurrence.
A month in remission, Danielle shares her cancer story with us including her experience with chemo, fertility preservation, and a bone marrow transplant, her plans of turning her journals into a book, her outlook on being diagnosed with Hodgkin’s lymphoma twice, and her advice to those on their own cancer journeys.
I feel like even when you’re struggling, you can reach for the stars and find meaning in your suffering, never give up hope, and always choose love over fear.
Danielle D.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
I’m Danielle Draper. I’m 26 years old. I was born and raised in Annapolis, Maryland but I’ve been living and working in Washington, D.C. for the last four-ish years. I really like politics and government affairs.
For fun, I love hanging out with a really large friend group and normal mid-twenties activities. Going out to concerts. I’m really adventurous, I love to travel, and I love yoga. I really want to be a yoga teacher. I grew up doing dance my whole life. I’m really into health, fitness, exercising, and eating healthy. My family and I have always been really into integrative health.
Where did your cancer journey begin?
She had a rare blood cancer called myelofibrosis, which is a malignant bone marrow disorder. She was diagnosed with cancer.
My story is extremely unique in that my mom started feeling really itchy and would bruise easily, but she was just going to her normal physical doctor’s appointment and she got her blood drawn as usual. She’s a super healthy person, and all of a sudden, her platelet count was extremely low.
She bounced around a few doctors, then finally, one doctor was like, “I think you should get a bone marrow biopsy.” That confirmed that she had a rare blood cancer called myelofibrosis, which is a malignant bone marrow disorder. She was diagnosed with cancer.
The “C” word was never in our vocabulary. My family is so healthy, so that was such a shock for my family. Especially when the doctor told my mom, “You’re going to have to get a stem cell transplant.” We’ve never heard that word, so we were like, all right, what is the stem cell transplant? It’s a very intense procedure where they would replace her unhealthy blood cells with healthy cells using a donor. Most hospitals try to get a family member to be their donor because they’re most likely a good match. They requested that I get tested because I’m her daughter. I’m also young and healthy.
Preparing to donate stem cells for a transplant
We got tested and I found out I was a pretty good match. We started the approval process right away. There were a lot of questionnaires, I was going to get a lot of blood tests and everything was getting approved and was looking really good. At this point, we had told all our family and friends this is what’s happening. We gathered such a huge support system. Everyone was encouraging me and my mom that our family was going to get through this.
Now we’re about 3 weeks away from my mom’s transplant, everything’s going in order, and the date had been decided. A few weeks before, they had to do final approval tests which included a physical exam by the donor because they wanted to make sure that the donor was perfectly healthy.
I went to the hospital and I did an EKG, a blood test, a physical exam, and a chest x-ray. I definitely wasn’t worried. I rarely went to the doctor for anything at that point in my life. I didn’t even have a primary care doctor, just my pediatrician from my childhood. I went in with a very positive attitude, I felt fine that day, everything was looking good and I was just bouncing around.
A chest x-ray led to a surprise discovery
The doctor walked in and she asked me to sit down and she was like, “We found a tumor in your chest near your heart.”
I got the chest x-ray and the nurse said, “Oh, don’t worry, we’ve never had a donor have a problem.” Those were famous last words. I was waiting in the hospital room for over an hour, like, wow, these results for the chest x-ray are taking a really long time. I still didn’t think anything of it. I just thought hospitals were slow.
Then the doctor walked in and she asked me to sit down and she was like, “We found a tumor in your chest near your heart.” They were just as surprised as I was. Everyone was like, wait, what? She said, “Have you been losing weight?” I said, “Actually, I have been losing weight a little bit.” But I had started really exercising that fall, I’d been eating healthy. I thought it was just me making better, healthy choices in my life. She said, “If you’re losing weight, that’s obviously not a very good sign.”
Did you have any symptoms?
This is definitely a unique situation where I felt fine, but there was a mass the size of my fist near my heart. I didn’t know anything about oncology or anything. My mom went to her doctor and was like, “This is what’s happening.” Then my doctor sent me to one of the best oncologists in Annapolis. I feel really blessed. It was almost like a recommendation by word of mouth.
Getting a biopsy and diagnosis
He said it was classical Hodgkin’s lymphoma.
We went to the oncologist and he took some blood labs and already things were not looking very good because Hodgkin’s lymphoma has certain markers and tests you can do. Those weren’t very good. He asked to get a biopsy right after Christmas.
I tried to have a normal Christmas. December 27th at 5:00 in the morning, I had the biopsy and I think my oncologist pulled a few strings to rush the results, but we got the results the next day. He said it was classical Hodgkin’s lymphoma, one of the most common cancers in people in their 20s. That terrible day of that chest x-ray was December 18th and then I was diagnosed December 28th, so in about 10 days I went from living a completely normal life to having cancer.
It was so shocking. I don’t even know how to describe it. It was definitely the worst moment of my life. I literally thought I was going to die the next day. I was like, I have a month to live.
When I got that chest x-ray, my mom was traveling. She’s a flight attendant, and I called her because she had known that I was getting my approval test, so she was anxious to hear how it all went. At that point, everything was being approved. I called her and she was like, “Hi, honey, I’m about to take off.” She was traveling to Rome and she said, “Is everything all right? How did the test go?” I was like, I can’t tell her. I can’t ruin her trip, so I just lied and said, “Everything’s fine. I’ll see you when you get home.”
Then I had to sit her down and I was like, “I can’t be your donor anymore.” She was like, “What? Why?” I said, “There’s a tumor in my chest.” It was probably the worst look on her face I’ve ever seen. I’ll definitely never forget that moment. It all happened so fast. It was so unbelievable.
A week before that, I had just gotten my dream job. I had been applying for 5 months, working the full-time grind of sending out resumes and cover letters and interviewing, and on December 10th, landed my dream job. I’m over the moon at that point. I had just moved into a brand new apartment with my boyfriend. I thought I was entering a new phase of my life.
That was my main concern, which is weird. It should have been will I die or not, but I was like, I want to start this job…When you’re 25 and just starting to enter the workforce, you don’t want to be held back.
Then when I got diagnosed, I think my first concern, which sounds silly, was I better not lose this new job because it’s something I’ve worked so hard on. That was my first question to my oncologist, can I keep working? Can I start this job? He was like, “If you think you can do it, I encourage you to do it.” That was my main concern, which is weird. It should have been will I die or not, but I was like, I want to start this job.
When you’re 25 and just starting to enter the workforce, you don’t want to be held back. But we were all really surprised. We barely told anyone because everyone was so worried about my mom. It was just so surreal that we didn’t want to tell anyone about what was going on with me because it was too much to handle.
Beginning cancer treatment
Once I was diagnosed, 2 weeks later, [my doctor] was like, “Let’s get you started ASAP.” We did talk about fertility preservation. My oncologist’s niece was a fertility specialist. I guess they knew that I didn’t need as much treatment as someone who had stage 4 Hodgkin’s lymphoma. We decided to just push on. I really trusted him and his niece. They were like, “We believe you’re going to be fine.” I was like, okay, I trust you.
I needed to get a port in, which I still have, and we started chemotherapy in the middle of January.
Did you opt for fertility preservation?
It was so blurry because everything was moving so fast. When he was reading the list of side effects, which is pages and pages of side effects, fertility came up, which for a young person, is such an important part of your life. Me and my mom were like, “Do you think we should do this?” And he was like, “It’s really up to you. A lot of women do, but a lot of women don’t. I personally think you’re going to be fine.” He was very correct, I was fine.
I did, which is totally standard for Hodgkin’s lymphoma. I did 8 rounds. The standard is usually 12, but I did 8. It was terrible. I read somewhere that ABVD is one of the hardest regimens there is in chemotherapy. It is just so brutal. It’s this wave of toxic poison rushing throughout your body. I feel like a lot of cancer survivors talk about when you’re in that fight or flight. You’re so zoned in on making it through that. I made it through it. I slept.
The first 4 days are the hardest, and you just sleep a ton and take it easy. I did a lot of yoga to manage my side effects, which is good for nausea, the digestive system and also managing anxiety. I also took Compazine, which is an anti-nausea drug. I definitely recommend asking your doctor for anti-nausea medication, being near a bathroom at all points, and trying to eat as much as you can. I also ate marijuana edibles which were approved by my doctor. And trying to go for walks, that’s how I manage the side effects.
I read somewhere that ABVD is one of the hardest regimens there is in chemotherapy. It is just so brutal. It’s this wave of toxic poison rushing throughout your body.
How did your cancer react to chemotherapy?
I did 4 infusions and then [my doctor] wanted to check if it was working. I got a PET scan that showed that I had a complete response. The tumor in my chest had disappeared completely, so we were so happy.
A lot of doctors recommend that you keep going with more infusions, that way you’re killing off those hidden cells because PET scans don’t necessarily catch everything, unfortunately. His recommendation was to keep going, which was a little disappointing to hear because chemotherapy is so terrible. I hadn’t lost my hair yet. I was one of the few that didn’t, and I was like, I really want to hold on to my hair. But I trusted him, so I was like, alright, I’m going to put my head down and do 4 more treatments.
Did you lose your hair to chemo?
I lost it later, but during that point, I had really long hair and it definitely started thinning a lot, but it wasn’t coming out in clumps like a lot of survivors say. I had this feeling I could hold on to as much as I could. It’s super depressing. I loved my long hair and it started coming out. You always worry you’re going to wake up one day and look in the mirror and it’s just going to be gone. Preparing yourself for that, it’s traumatizing.
I forget what chemotherapy caused it, but it’s basically the chemotherapy they used to kill off my immune system before the transplant. It’s not even to kill the cancer. It’s to kill my immune system. They told me right away that it would pretty much remove all my body hair.
I loved my long hair and it started coming out. You always worry you’re going to wake up one day and look in the mirror and it’s just going to be gone.
Did you have a reaction to Bleomycin?
No, I know that some people take off the Bleomycin because they’re getting really severe side effects. He was like, “We’re not seeing that, so I’m sorry, we’re going to keep going with it.”
Reoccurrence
What were the results of your post-chemo PET scan?
I’d finished the 8th infusion. I rang the bell. My whole family came into the infusion center and were hysterically crying. It was a really happy moment. But of course, it’s not over till it’s over. I needed to get a clear scan so I could move on with my life, hopefully. They always encourage you to wait a month for your last infusion because they want the chemotherapy to settle into your body.
I got a follow-up PET scan and he informed me that it had gotten bigger. That’s when it’s no questions asked. This is cancer, this is not a cold.
It was about a month after my last infusion, we got a PET scan. I went in with really high hopes because I had already been in remission at that point. He told me that something was lighting up like a tiny, tiny little spot. The problem with Hodgkin’s lymphoma is that your lymph system is extremely sensitive. Like when you get a cut, a lymph node can swell up. When you have a cold, your lymph system can react. I had my COVID vaccine and that showed up on my PET scan once. The scans also can show how – they call it – hot like radioactive the lymph node is. It was very hot, very red, so that was not good.
We entered a wait-and-see period over that summer. I got a follow-up PET scan and he informed me that it had gotten bigger. That’s when it’s no questions asked. This is cancer, this is not a cold.
Processing cancer reoccurrence
I found meaning in my first diagnosis because we accidentally got that chest x-ray and it almost felt like a divine intervention. Everyone told my family how lucky we were. I didn’t have any symptoms and we just got that chest x-ray and I was stage 1, so we caught it extremely early. Many people are bounced around doctors for years. I felt like it was meant to be that I got that chest x-ray and found meaning in it and strength and hope and life lessons.
With the second diagnosis, I was like, this is so unfair. I already went through this. I already gained the lessons that I needed to gain. I had already put in all the inner work. I was already committed to living a much healthier lifestyle. It just felt so unfair. I think that’s what I really got from my second diagnosis was, cancer is genuinely so unfair and random. It’s not because you ate fruit without washing it or you smoked a cigarette once in your life. No, it’s just incredibly random. No one deserves this. I think that’s what helped me process it, recognizing this wasn’t fair. I don’t deserve this. I didn’t do anything to deserve this.
I went to my new oncologist because I was referred to Johns Hopkins, which is one of the best medical schools in the country. Your first question is, did I do anything? Why did this happen? Almost 95% of Hodgkin’s lymphoma patients are cured for the first line of treatment. Why am I in the 5%? What did I do? He was like, “That’s pretty much the first question everybody asks. And it’s not because you didn’t pray hard enough or because you ate too much sugar or you’re not positive, but it’s just an aggressive form of Hodgkin’s lymphoma that’s resistant to chemotherapy. It’s not your fault, and there’s pretty much nothing you could have done to change it.” I told myself, it’s not my fault and I was dealt a crappy hand and was going to do the best I could to fight it.
With the second diagnosis, I was like, this is so unfair. I already went through this. I already gained the lessons that I needed to gain.
Switching medical care teams
My doctor told me that when you have refractory Hodgkin’s lymphoma, the next line of treatment is pretty much always a stem cell transplant, which is the same procedure my mom got when this whole thing started. That was a full-circle moment for my family.
He was like, “I’m recommending you see 2 doctors and decide which one you like better,” which I think is really important because I went to the first one and I was like, alright, I guess I could do this. We felt like we had made a decision. Then we went to Hopkins and we left there being like, whoa. We should go there. I feel like you should definitely have a second opinion. You never know which one will feel right in your heart.
Choosing between a stem cell transplant and a bone marrow transplant
One hospital said they wanted to do an automated stem cell transplant, which is very common for relapsed Hodgkin’s lymphoma patients. Then we went to Hopkins and they said they wanted to do a bone marrow transplant which uses a donor similar to my mom’s transplant. I have a wonderful, young, healthy brother who doesn’t have a tumor in his chest. He was like, “We would love to use him as your donor.”
They also did an outpatient program at Hopkins, and that changed my decision so fast. Not staying in the hospital was key to me. That scared me so much to see myself living in a hospital for a few weeks. It’s actually becoming more common around the country, these outpatient programs for stem cell transplant patients. They had an outpatient program, so I was like, I think we should go with Hopkins. I had the insurance approve it all.
Bone Marrow Transplant
Describe what a bone marrow transplant involves
It is a very long recovery where you’re extremely immunocompromised. You can’t leave your house for a few weeks.
A bone marrow transplant is a very intense procedure where they kill off my entire immune system, and then they transfuse my donor – which was my brother’s healthy stem cells – into my body. It’s this big bag. It pretty much looks like a bag of blood, but it’s surgically removed from my brother’s hip bone. He was placed under anesthesia and they extracted his bone marrow, put it in a bag, filtered it, and then brought it to me.
At this point, my immune system is totally killed off through chemotherapy. I have no immune system, no white blood cells, and they infuse his stem cells into my body, and from there, it’s like a garden. He said, “Your immune system will start growing from scratch using your donor’s immune system.”
It is a very long recovery where you’re extremely immunocompromised. You can’t leave your house for a few weeks. You’re extremely tired because you don’t have any white blood cells and barely any red blood cells, which is where your energy comes from. You’re super tired and there’s a load of other side effects, like you’re not hungry at all. You lose your hair immediately. There’s a lot of medication. For young adults, you definitely want to do fertility preservation before your transplant. Luckily, I had done that through Shady Grove before my transplant.
Preserving fertility
That process went really well. I had a really good experience. Once you tell Shady Grove that you are an oncology patient, they put you on a fast track which they don’t do for normal people who are seeking fertility preservation. They know that you’re in a life-and-death situation. They want to get the process going as soon as possible so you can begin treatment.
Also, there are so many programs out there that will pay for the medicine so you save thousands and thousands of dollars, which would otherwise be a really expensive process. I’m not saying it’s free by any means. It definitely is still pretty expensive, especially for a young adult like me. It’s why I started a Go-Fund-Me to help pay for fertility preservation.
Luckily, it went really, really well. We extracted a lot of eggs. My oncologist was right about the chemotherapy not affecting my fertility. That made me happy that he was right because I still had a lot of eggs and the process went really well. I also feel like they showed me a lot of empathy. They knew that I was in a terrible position and time in my life. I also felt like the doctor showed me a ton of empathy whenever he saw me.
I did have a few rounds of immunotherapy, which is pretty revolutionary in the cancer world. I can’t even imagine what the next 10 years are going to look like for Hodgkin’s lymphoma patients because immunotherapy has proven to be so successful with Hodgkin’s lymphoma.
I had nivolumab and brentuximab and it got me back into complete remission before my transplant, which increased the success of the transplant tremendously. I was so happy to hear that the cancer was responsive. The side effects were night and day compared to the chemotherapy and you don’t lose your hair. I can’t wait to see what is achieved with immunotherapy in the next few years.
I can’t even imagine what the next 10 years are going to look like for Hodgkin’s lymphoma patients because immunotherapy has proven to be so successful with Hodgkin’s lymphoma.
What was your experience getting a bone marrow transplant like?
The bone marrow transplant process, it’s extensive. So much approval has to go into it because it’s an insane scientific achievement. I don’t even know the science behind it all, but so much approval goes into it. I’m getting my blood drawn all the time, my brother has to submit his blood all the time, making sure we’re both ready to do this thing. Getting my heart checked, lungs checked, making sure my liver is healthy, making sure everything is good. I had to get a sinus x-ray. A lot goes into the preliminary testing.
Then finally it’s the extraction day, which they call your birthday. My birthday is April 4th, 2023. Right now, I’m like 5 months old. It’s a very exciting day. It’s actually kind of anticlimactic. I didn’t really feel any different when I got his bag of cells injected into my body. It’s like a normal blood transfusion. I was an outpatient, so I had to be monitored at the hospital every day for 60 days. The first month, they start giving you days off. That was nice. It’s not every day for 60 days, but almost every other day.
What was recovering from your bone marrow transplant like?
My recovery was nothing short of a miracle in terms of side effects. I blame some of it on how terrible ABVD was, in that my pain tolerance was so high because of how terrible that chemotherapy was. By the time the bone marrow came around, I was like, this is terrible but not much more terrible than chemotherapy.
I pretty much did all the same way of treating the transplant side effects with my chemotherapy. I was sleeping a ton, trying to go for walks as much as I could, trying to eat as much as I could, and taking marijuana edibles. Then the mental side effects and being really transparent with my family and friends, and trying to have a strong network.
I documented my recovery via TikTok. I started a TikTok for my cancer recovery and bone marrow transplant, process, healing journey. I did a lot of yoga during that time as well. I didn’t do it for very long, but even if you do it for 10 or 15 minutes, and not even extensively, you’re going to feel a little bit better each time and maintain your strength. That’s how I helped myself during that hard time.
What effect did the bone marrow transplant have on your cancer?
The next day, I happened to be checking my email and I saw an email from my doctor that said the scan was all clear and have a great summer.
A hundred days after a stem cell transplant is when you get your follow-up PET scan to see if the transplant worked. We went back to Hopkins. Anyone who has ever had a scan knows the scanxiety that goes along with getting a scan. It is absolutely the worst feeling in the world. This mental anguish that goes with that waiting is so awful. It feels like you’re waiting to hear if you won the lottery of life or not. I barely slept at all.
The next day, I happened to be checking my email and I saw an email from my doctor that said the scan was all clear and have a great summer. Very anticlimactic, but I was so ecstatic. My mom, who was just as anxious as me, was driving to my apartment to be there when my doctor called me with the results. I decided to surprise her and record her reaction. We were super overjoyed knowing that it had worked, and now we can actually start the post-cancer follow-up journey. Because at that point, I had never gotten that far.
Reflections
How does it feel to be in remission?
You just start going back to your normal life but with this whole new outlook. You’re so grateful to be here and you appreciate the little things.
It’s so early. I just got into remission a month ago. My oncologist was like, “We’ll see you in September.” From there, we’re going to work out how often I should get a scan and blood tests. It’s early, so I think it will feel super real this winter because I’ve spent the last 2 birthdays and Christmases of my life with cancer. It’s really the fall and the winter that have been absolutely terrible. I think when that time comes and I don’t have cancer, it will feel actually real.
You just start going back to your normal life but with this whole new outlook. You’re so grateful to be here and you appreciate the little things, as cliche as that sounds. Even getting dinner with my friends, I feel so grateful because about 2 months ago, I couldn’t even do that. I couldn’t go to a restaurant. Or traveling, I’ve been on so many trips this summer because I want to make up for lost time.
I definitely have a ton of anxiety which I take medication for. I also go to a therapist and I do a lot of yoga. Definitely trying to have healthy outlets. I read a lot of books from cancer survivors. It helps me justify what I went through. Also social media. There’s a huge community on social media, so I feel like being there for each other is really important.
What would you say to someone on their cancer journey?
Cancer, and life in general, can be really unfair and you can be dealt a really bad hand that you don’t deserve. That said, the human spirit is remarkably resilient. I feel like since the start of humankind, we’ve all had faith. It’s within our DNA to fight and push on and do the best that you can with what you’re given.
This tattoo says “Per Aspera Ad Astra.” It’s Latin for “through adversity to the stars.” I feel like even when you’re struggling, you can reach for the stars and find meaning in your suffering, never give up hope, and always choose love over fear.
When I was first diagnosed, I was pen to paper. I’m a huge believer in having a journal. I wrote so much that I want to turn into a book specifically for young adult patients. Because I feel like people in their 20s with cancer are a forgotten part of the cancer community because we don’t identify as children anymore, but we don’t identify as older adults. I definitely think it presents unique challenges that I want to write about and help others go through it.
Cancer details: Most common and most treatable form of Hodgkin lymphoma 1st Symptoms: Shortness of breath Treatment: 3 rounds (6 infusions) of ABVD chemo
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)
Jason Randall, A Stage 4 Colorectal Cancer Survivor
Jason’s Stage 4 Colorectal Cancer Story
Jason’s cancer journey began in 2005, in the middle of his Navy service. He began experiencing stomach issues and was diagnosed with GERD. Much later, in 2018, he was seen by his doctor when he developed severe abdominal pain and infrequent bowel movements. A scan revealed 80% of his liver was covered with metastatic disease, which led to a stage 4 colorectal cancer diagnosis.
After years of fighting Veterans Affairs to prove his cancer was connected to exposure to cancer-causing chemicals during his Navy service, restitution was granted through the Pact Act – an Act that grants better healthcare and funding to veterans exposed to toxic chemicals.
Jason shares his cancer journey, his work with COLONTOWN – a colorectal cancer support network, and how he overcame liver surgery and chemo after doctors said it couldn’t be done.
Just this year, Jason and his wife launched Kohala House of Healing, a cancer retreat in Hawaii. The lush hideaway is designed for those affected by cancer to find hope, healing, and renewed purpose.
At the Patient Story, we feature the real voices of cancer patients to empower and offer hope. Explore more Colorectal Cancer Stories for further inspiration.
My name is Jason Randall. I live in Eudora, Kansas with my wife and 3 children. We live on a hobby farm. I was in the Navy for 5 years from 2003 to 2008. After that, I went to school.
My wife and I were best friends in high school. After the Navy and college, we reconnected. When I came back from Hawaii for a semester at the University of Kansas, we started dating. My wife has our daughter from a previous relationship, who I’ve adopted.
We’ve lived on this hobby farm for 10 years. I’m a cartographer by profession. Technically, a GIS analyst. We like to fish as a family. We go to the gym and swim quite a bit.
When did you first notice something wasn’t right?
In about 2005, right in the middle of my Navy service, I had some stomach issues that they tested. They came to the conclusion that I had GERD reflux disease, so they put me on omeprazole and Zantac-type medications. It was fine for years after that.
About 2018, I was diagnosed with stage 4 colorectal cancer. It blindsided us. I say us as in my family because I always include caregivers. They are often overlooked in this process.
They saw that about 80% of my liver was covered in what appeared to be metastatic lesions…It started me in this world of advanced-stage colorectal cancer.
Two weeks before, I had some severe abdominal pain that I’d never had before and 2 weeks before that, I’d noticed that I wasn’t going to the bathroom at a regular frequency. Then it just stopped and I started getting abdominal pain. That’s when I thought something was wrong. I need to go get this checked out.
My mom had diverticulitis quite a bit over the last couple of decades and they said, “It’s probably that. Let’s get a CT scan just to make sure so we can put you on antibiotics for it.”
I had that scan on July 16th. They saw that about 80% of my liver was covered in what appeared to be metastatic lesions. That prompted a PET scan on the 17th which confirmed it. My liver, the large majority of it, was covered in metastatic disease. It started me in this world of advanced-stage or stage 4 colorectal cancer.
Was there any connection between your GERD and colorectal cancer?
I brought that up along the way many times after I was diagnosed. The doctors never put them together because they generally think, anything in the upper esophagus or upper GI tract is Barrett’s disease or esophageal cancer instead of colorectal cancer.
My colon, where we found the tumor was at the sigmoid part of my colon, right before the rectum. So there really wasn’t a tie to it.
Ironically, after I had surgery to remove 30 cm of my colon, my GERD completely went away. It cued me to ask, what’s going on here?
If you look at the history all the way back to 2005, I was on ranitidine, which is Zantac. Then when I got out of the military into the Veteran Affairs (VA) system, I was on omeprazole for 10 years. My doctor mentioned that the advanced stage of my disease and the extent of it [means] it had been in me for about 10 to 15 years at a minimum. That squarely placed it right in my military service.
Did the VA take responsibility for your diagnosis after your exposure to cancer-causing chemicals?
Not definitively. Presumptively, yes. I was fighting the VA for about 3 years, trying to tell them that everything lines up with the exposures I had while I was in the Newport News Shipyard.
After I got out of my basic and my school training, I reported to the USS Eisenhower in 2004, in what they call an RCOH overhaul, where they take an aircraft carrier in the middle of its life and completely redo everything. They take it down to bare steel. They replace the reactor rods. I was in that environment for about 2 years.
We had all sorts of chemical and toxic exposures. You can use PPE and try to protect yourself, but you still inhale it once you take the equipment off. I was also within the burn pit zones in the Persian Gulf from 2006 to 2007.
Finding help through the Pact Act
They said you need to prove to us and provide a nexus that caused this, which is impossible. Even though statistically, 25-35% of all veterans of any service have an increased risk of multiple cancer types.
Jon Stewart was one of the biggest promoters of this law called the Pact Act for Toxic Exposures and Burn Pits. It finally connected my service to my cancer diagnosis.
Because of the way the laws were written before, the burden of proof was on the person having cancer. They said you need to prove to us and provide a nexus that caused this, which is impossible. Even though statistically, 25-35% of all veterans of any service have an increased risk of multiple cancer types, like prostate, breast cancer, colorectal cancer, and all sorts of different things.
The law was really good to help veterans who have been struggling to get this care and to have the military take responsibility for that within their service.
Did you have any other symptoms before your stage 4 colorectal cancerdiagnosis?
The only other symptom was, before diagnosis, I had something in my belly button that would appear every 4 to 5 months. By the time I could get in [to the doctor’s office], it would go away. They’d say, come back when you can. By the time I could get scheduled, it would go away.
It only lasted for a couple of days and it was like a little bit of discharge from my belly button and a little bit of hair follicles. It seemed like there were hair follicles that would come out. It’s hard to explain, but something wasn’t right.
It turns out that’s right where my primary tumor was, along the sigmoid colon. It was like, this could be a correlation to that.
What happens, happens but I wish I could have got in when they could have examined that a little bit better.
Did you have bleeding?
They say the number one symptom of colorectal cancer is no symptoms at all.
You hear a lot of people with colorectal cancer say they had blood in their stool. I think I’ve only had it at one point and it’s because I ended up having an emergency stent placed shortly after diagnosis because of the situation at hand. Even then, it was a couple of times.
They say the number one symptom of colorectal cancer is no symptoms at all.
How did you react to receiving your stage 4 colorectal cancer diagnosis?
No matter how much you think you know about cancer, unless you’ve experienced it firsthand or been a primary caregiver or even a secondary caregiver to someone, there are so many misconceptions about it.
It’s very vivid, even though in July, it’ll be 5 years now on this journey. I was diagnosed on July 17th, 2018. It was 2 days after my son’s second birthday, and my wife was pregnant with our third child.
I remember walking into the doctor’s office after the CT scan. They called about 15 minutes later and said, we need to see you tomorrow first thing. I go in and the doctor casually says, “I don’t know another way to put this, but you’ve got cancer and it spread to your liver.” I said, okay, took a minute, and then as soon as I walked through the doors leaving the place, it was like a rush of holy crap. I’m a dead man.
No matter how much you think you know about cancer, unless you’ve experienced it firsthand or been a primary caregiver or even a secondary caregiver to someone, there are so many misconceptions about it. I thought I was dead.
I come from a large breast cancer family. I carry a BRCA1 germline mutation. The women in my family, if they’re a carrier, they’re almost guaranteed to get breast cancer. It’s not as prominent in men. My mom had cancer, and her mother passed from cancer. I have had exposure to this, but it was emotionally devastating.
My wife was at the bowling alley with the kids and a friend. When I called her, she completely lost it. It was a bad, very dark time. We ended up coming home that night, my wife and I. We had my parents watch the kids, and we just held each other thinking, how much time do I have?
With 80% of my liver covered, that’s not a good situation. And I had a fully blocked sigmoid colon so they couldn’t go in and remove the primary tumor. I had to have that stent open me up before I could pass stool. Everything from there was a whirlwind getting into doctors, and getting the stent placed. It was emotionally devastating.
Treatment
What were the next steps in your treatment?
That’s a little more vague to me. I do remember [the doctor] saying, we’re going to have to get you in for a PET scan, which happened the next day to confirm it was stage 4 colorectal cancer. After that, I was at my local hospital system near Lawrence.
If you’re not used to it, it’s a lot to process, to listen to everything they’re telling you, and to absorb it.
Luckily, I have a doctor cousin who took me with his training. We called him and asked, “Do you have any advice?” He said, “I want you to go see Dr. Miranda at KU Medical Center,” which is the National Cancer Institute (NCI) here in the Kansas City area. It’s the only one in the Kansas City area.
He came with me to the appointment. That was a very pivotal moment in this. Going to one of the top centers in the area with that NCI rating, it’s important to have.
I work in the colorectal cancer support community and advocacy, and I heard the average time for people going from symptoms to starting chemotherapy is above 200 days, which is insane. I got in within 2 weeks. I was diagnosed on July 17th and I had my first chemo on August 1st, about 2 weeks later. I’m very blessed to have that team move that quickly.
A lot of it is very vague. It was just, go see this doctor, see this, get this scope. If you’re not used to it, it’s a lot to process, to listen to everything they’re telling you, and to absorb it.
I’m very grateful my oncologist never told me an expiration date. They did say, “You have a terminal prognosis of chemo for life and are inoperable due to your extended disease. You’ll never get off chemo and you’ll never be operated on for a curative intent. Palliative reasons, possibly, but we’ll do everything we can to extend your life.” That was a big pill to swallow
How did you come to terms with a terminal prognosis?
I don’t know if I ever fully digested it. I never believed I had cancer. It was all very surreal. I thought, is this happening? Did I get phase-shifted into some weird parallel universe? This has to be a bad dream. When am I going to wake up?
It was a lot to process. Every time I heard it, I would sigh and griff and say, “No, I don’t want to hear this. This is not my fate. I don’t foresee this being me.” It was really hard to swallow, especially every time my oncologist said, “We’ll do everything we can to extend your life, but you will be on this forever.”
I was put on what they call FOLFIRINOX. Sometimes they call it FOLFOXIRI. It’s basically how the drug is administered. With colorectal cancer, if you’re not a candidate for immunotherapy, irinotecan, and oxaliplatin are the 2 big drugs [that are given], and 5-FU which has been a standard since the 70s.
I had what’s called the kitchen sink. It was a combo of those 3 drugs. I started on August 1st and I started with what would have been the first of 30 initial cycles. I did 9 of the FOLFIRINOX, then we paused to do Y-90, which is Yttrium-90. It’s a radioactive isotope of the element yttrium.
They go through your hepatic vein and your groin and they send a catheter up into your liver. It’s a liver-directed therapy where they drop millions of radioactive resin beads right into your liver where the tumors generally form based on where the blood flows. I had 2 of those in November and December 2018, then I resumed 11 more treatments of what they call FOLFOX, which is the previous one, minus the irinotecan. They wanted to drop down the irinotecan because of the 2 Y-90. It’s a lot to take on with the radiation.
It’s targeted radiation, so I ended up having 6 of the 5-FU, largely driven by blood numbers – whether my white blood cells were up or my platelets were high enough. My big issue was low platelets, something I still suffer from today, from all those treatments.
Switching treatments due to lung spots
In September of 2019, I had some lung spots show up so we switched the drug oxaliplatin. A lot of the time, oxaliplatin causes severe neuropathy. Luckily, I never had too bad of that and I ended up taking 20 cycles with that in the mix, which is a lot. Some people dip out after 4. Usually, it’s between 8 and 12 of those.
Then I started back on the irinotecan drug through a combo called FOLFIRI. We added a biological drug called Vectibix or panitumumab, an epidural growth factor inhibitor that prevents blood vessels from growing. I did 4 more treatments through December 2019, and then I stopped to break for Christmas.
Getting a second opinion led to new treatment options
Even though they had my best interests in mind, I still sought that second opinion out at the City of Hope in California. It’s probably the best decision of my life.
My story started to change through COLONTOWN, an online colorectal cancer support community. I learned about Dr. Fong who’s a liver specialist and surgical oncologist. He doesn’t do just the liver, he does a lot of stuff in the abdomen area minus the colon itself.
People kept saying, you need to go see him. I had scans in December at my local center. Even though I had a really good response to chemo, they told me, you’re going to be on chemo for life and inoperable. They were scared that if I did have liver surgery, the liver would grow back. It’s the only organ that does that and the disease would progress with that regrowth.
Even though they had my best interests in mind, I still sought that second opinion out at the City of Hope in California. It’s probably the best decision of my life. It led to a surgery that was 12 hours long in February 2020.
They removed my entire right side and a right hepatectomy and then a lower anterior resection (LAR). They removed 30 cm of colon and a quarter of my rectum with curative intent and also took my gallbladder. I had 5 ablations on my left side at the time. I had lost 110 pounds prior to that surgery.
What inspired you to get a second opinion?
It was the support group COLONTOWN. People kept mentioning it. I was holding out on hope at my current NCI center. I still actually see them to this day, but I was hoping that with that next set of scans, they’d say, we’re going to try. They never did.
Ultimately it was my wife who said, “You need to go do this. Let’s go out to California. What is the worst they’re going to say? No, and you’re still the same?” I said okay, let’s rule it out. If one of the top people in the world says no, then it’s my fate. Thankfully it wasn’t.
Cancer recurrence and COVID caused changes to treatment
That’s not where the treatments ended. I stopped chemo after that because I had 30 cycles and 2 liver embolizations and they said my body needed a break. About 6 months later it returned, but not in my liver or colon. It returned in my tailbone in October 2020.
I started back on the FOLFIRI with the Vectibix for 4 more cycles. On my very last cycle, my 34th chemo, 2 days later I tested positive for COVID. That was a crazy week. COVID delayed my radiation treatment.
In February and March of 2021, I had 28 full pelvic radiation sessions to the entire pelvic region, which destroyed my rectum. For 3 months, it was pretty rough. I was sitting on the toilet for 3-plus hours a day, not really living life, just stuck.
Finding hope after his son’s birth
Throughout January and February 2019, I was on a lot of treatments. My son was still in my wife’s belly at the time. I caught him about 2 hours after my eighth round of heavy chemo. That gave me a lot of motivation, wanting to see my kids grow older.
It’s a very powerful moment in my life. Seeing my son born and being able to catch him. Both my sons were born at this house. My wife did a home birth, bless her soul. I didn’t think it would work out, but it did and it really changed me. It gave me a little bit more hope in October 2018 when that happened.
Then it got dark again. I had surgery in January 2019 because the chemo destroyed my anus and caused a fistula to bore through. It caused a lot of pain.
In early February, I found an integrative medicine doctor through my dentist of all people. I went to see him and he joined my team. That was one of the biggest moments of my stage 4 colorectal cancer experience. Not just diet and exercise, which are important, but he also helped mitigate the side effects, which helped get through it and process it.
I had hope, even though the hope was taken out from underneath me when they said you’re going to be on chemo for life.
One of the biggest things [he taught me] was the mind-body connection and meditation called Psychosomatic Wellness, which has a lot of science behind it. I wasn’t big into that kind of stuff. I thought, “This is heebie jeebie. This isn’t going to work.”
About a month into it, I connected to it. I went somewhere. I still don’t know what to call it. Some people may call it universal energy, God, chi, soul. Whatever you want to call it, I went somewhere and connected with something. It really helped me process things.
I was able to accept life, death, purpose, and what all this means. I was grateful for whatever was to come. I carried that into this second opinion. I had hope, even though the hope was taken out from underneath me when they said you’re going to be on chemo for life. What do I have to lose? I went out to California and sure enough, it happened and here I am still.
Getting an Ostomy
Describe getting an ostomy bag
Back during the big February 2020 surgery, I had a temporary ileostomy placed which is where the small bowel dumps into a bag with a stoma. That was reversed in May 2020.
Fast forward to the radiation. In June 2021, I had an abdominal perineal resection (APR). It’s a surgery that’s known as Ken or Barbie butt. Imagine a Ken doll or a Barbie doll. They just have a straight stitch on the backside. They took my anus, my rectum, and in my case, my tailbone and part of my sacrum to get clear margins. It was successful, and it left me with a permanent colostomy bag but it’s been a blessing in disguise.
Having it removed has been great for me. I don’t sit on the toilet for 3 hours a day. I spend 60-90 seconds messing with bowel function now. I still swim 3 to 4 times a day. I get to play with my kids. I lost 110 pounds and I wasn’t sure if I’d ever gain it back, and now I’m on the other end of it. It’s been so good to me that now I need to lose a few pounds.
What types of ostomy bags are there and which do you use?
There are several types of ostomy:
The ostomy that comes off your small bowel and avoids your large intestine.
A colostomy, which can be placed along your transverse colon all the way down to your sigmoid.
One-piece open bags which have a little cut-off valve that you can drain as needed.
Two-piece drainable bags.
Two-piece closed systems in one-piece closed systems.
I had a temporary ileostomy. At first, they tend to be more of a liquid output. They’re always on because the way the bowel works is your ileo dumps into your cecum and that’s when your stool starts to form. Before that, it’s all liquid as your small intestine absorbs nutrients. [Ileostomy is] common when people have a large surgery over a colostomy.
If you’re removing the lower part, you tend to get a stoma. That’s the medical name for the exit point. The stools tend to be more formed, it’s more predictable. I find that [colostomy] systems are a lot easier to use than the ileostomy systems.
Considerations when choosing an ostomy bag
Any closed system is not a good idea if you have an ileostomy, because you’d be changing it all day long. Whereas with a colostomy, it’s a little more predictable. It’s easier to manage. People tend to go with closed systems for convenience.
I used to be a 2-piece ostomy person for both my ileostomy and my colostomy. I’ve had about 2 years of colostomy and 3 months of ileostomy. With the colostomy, I’ve gone down to a 1-piece system.
There’s usually, a flange that adheres to your stomach. Once that gets on, a lot of people use either pastes, barriers, or protective rings to help hold that on to prevent leaking.
Leaking is the #1 thing that gets people flustered. It’s like crapping your pants and no one wants to crap their pants. It’s one of the big anxiety drivers with an ostomy. Am I going to leak? How am I going to manage this?
Also when you have a peristomal hernia. The creation of a stoma is a hernia in itself. That can cause more herniations so you want to be very careful with your abdominal wall and building your core back. When you get a herniation, you can feel it. It can lead to blockages.
With an ileostomy, you have to watch your diet a lot more than with a colostomy. Things tend to get blocked more with the ileostomy. From my experience and hearing from others’ experiences with a colostomy, people can still get it.
Leaking is the #1 thing that gets people flustered…It’s one of the big anxiety drivers with an ostomy.
If you have an ostomy, make sure you have a good hernia belt. I’ve got several. I have several Stealth belts. I also have one called a Stomaplex, which is like a stoma guard for impact. You don’t want things to hit it because it can bleed. Some people also use a Nu-Hope binder. It’s like a taller binder that goes around with a hole in it to support that and push your abdominal wall together so that you don’t herniate as often.
Is colostomy irrigation an option for some?
You cannot do it with an ileostomy, but with a colostomy, not many people are aware you can do irrigation. Instead of having to worry about having a bag going throughout the day and finding a frequency, people that are more active tend to go the irrigation route.
Imagine an enema but for your stoma. It goes all the way up your bowel track and basically gets behind the stool and you force water through it and then drain it over the next 30 minutes to an hour after that. When it drains, your bowel is empty and you can put a stoma cap on it. A lot of people are able to go hiking for 24 to 48 hours at a time [after irrigation].
Has your ostomy experience always been good?
Go out there and explore, call, get samples if you can, and find the system that works for you.
I’ve had a very good experience with my colostomy and my ileostomy. A lot of people do have struggles though, so if someone’s out there and they’re asking, “Why does this guy have such a good experience?” You’re not alone.
I struggled the first couple of months with mine before I found a nice rhythm and system. Don’t be afraid to call the 3 big companies – Hollister, Convatec, and Coloplast – and request samples. It can be very good to talk to one of their reps to find out what system works for you.
Having an option between a flat bag and a convex bag can be a game changer. A lot of people get stuck and say, “This is what the hospital gave me. How do I deal with this?” Go out there and explore, call, get samples if you can, and find the system that works for you. Because what works well for me may not work well for you.
Post-Treatment Tests & Scans
A circulation tumor DNA (ctDNA) test helped catch cancer recurrence
In June when I had the APR, I got the colostomy, and my Ken butt, I had about a year’s worth of no evidence of disease (NED). Then I had a recurrence in my lung. A spot that had been on CT scans since diagnosis, which they thought was scar tissue, initially never responded to any other thing. After all the chemo I went through, it decided to grow in May 2022.
I didn’t go on treatment because we caught it very early. I’m on a circulating tumor DNA test (ctDNA) called Signatera. Another company, Guardant, has one called the Reveal. It’s the same test, different companies. They sequence the biology of your tumor, specific to the person and no one else. The signature will never pop up in anyone else.
It can detect circulating tumor DNA in your body. It’s not cancer itself, it’s just junk DNA our body puts off, but it has that signature of your disease and they can detect if you have a recurrence. My tailbone recurrence was caught by September or October 2020.
After I went through the radiation, the chemo and more radiation, and the second major surgery, I was about a year clear. Then I had that Signatera test which detected an extremely low amount.
Is a ctDNA test for everybody?
It’s still in the testing phase. Not everyone responds the same. Their bodies aren’t as sensitive to the test.
There are also different areas of the body that put off more ctDNA like the liver, whereas the perineal may not. It’s still in flux, but it can be another tool because the normal marker for me was never above. It was always within range and it still is. It’s never varied more than a point, so it was never really a good indicator. The Signatera test has been really important for that.
COVID delayed a necessary treatment
In May 2022 when I had a spot come back in my lung that grew, COVID struck again. When I went in to get it ablated, I’d had COVID 3 weeks prior. Even though I felt better, my lungs still had some junk in them covering up the spot and they can’t ablate what they can’t see.
Then in August 2022, I had a biopsy that confirmed it was colorectal cancer in my lung and I had an ablation the same day. I was in at 6 a.m. and I was out by noon, working at 12:30. It was the least invasive. It allowed me to skip treatments by detecting them so early.
As of Monday, I had a negative Signatera test come back and I had my CT scans showing that I’m 9 months no evidence of disease and I’ve been off chemo for 2.5 years.
How does it feel to be done with chemo?
Surreal. They told me I’d never get off of it, and here I am. 2.5 years off of chemo.
How often do you have scans?
Right now it’s every 3 months until I hit 2 years. Then it should jump up to every 6 months. In 3 to 5 years, they’ll jump it up to either none at all or every year.
I plan on setting records. I’m going to be the longest person NED ever. At least that’s the way I’m setting my mind up for it.
Reflections
Describe the work you’ve done since being diagnosed
I’m blessed to be where I am, and if I can help alleviate someone’s symptoms, give them peace of mind, or just provide some hope, I won’t be quiet.
I do a lot of work within the colorectal cancer support space. I’ve worked for COLONTOWN since July 2020, after I had my Dr. Fong surgery. Dr. Kaiser was my colorectal surgeon.
PALTOWN, which is the nonprofit for COLONTOWN, asked me to be on their leadership cabinet. They were forming a new leadership cabinet, a new model. There are 7 of us. I’ve been there ever since.
I do a lot of support work. I reach out to a lot of people. I do work for Man Up to Cancer. A primary goal is keeping men from isolating during a diagnosis.
I also do early-onset colorectal cancer awareness through the Colon Club. Through that group, I was in their 2023 On the Rise magazine. It lays out where we’re at and our story to raise early-onset awareness. It came with a photo shoot. I never thought I’d become a model but here I am.
I’m blessed to be where I am, and if I can help alleviate someone’s symptoms, give them peace of mind, or just provide some hope, I won’t be quiet.
The importance of expressing your emotions
Meditation, I went somewhere with it and that was my first foray into the emotional side of [my diagnosis]. I learned to accept that it’s okay to be emotional. And we should be emotional because if you push it down, it does nothing but hurt your mental health. Other people are going through this, and at this point in the game, if you have cancer, who cares?
It’s so much easier said than done, but you need to talk. Tell everyone how you feel. Some people are quieter than others. If you need to join a group and listen to other people do it, you don’t have to be active in those communities. Seeing what other people are going through can help your mental and emotional health more than anything. Some of us happen to be a little more vocal about it, but it helps to get people out of that bubble, that survival mode that we get stuck in.
A trip to Hawaii led to new revelations
In 2021, my family was gifted a vacation. During this trip, we realized that we weren’t living. We were stuck in this deep survival mode, which is mental and emotional depression. You’re living between scans. You’re stuck in survival.
It woke something up in us. We asked, what have we been doing? I’m doing all this support work, but we’re just going through the motions. We’re not really living our own lives.
We came up with the idea of going back to the Big Island of Hawaii. Then we said, we should move back there.
We came back [home], I looked at my wife and said, “I have this crazy idea. Would you ever move back, get a secondary house and host people to experience what we did?” I was thinking she was going to say, “You’re nuts, Jason. No.” And she said, “Yeah. I think that would be great.” So we started developing this plan.
I went to school for a semester on Oahu at the University of Hawaii Manoa studying anthropology and geography. It’s a beautiful place. If you’ve never been, I highly suggest going.
We were stuck in this deep survival mode, which is mental and emotional depression. You’re living between scans. You’re stuck in survival.
Connecting with a cancer retreat center
About 6 months into [developing this plan], I was looking for health care on the Big Island or through the VA because I’ll always need to go see doctors. I found this cancer retreat on the north side of Hawaii on the Kohala Crater. We said, “Holy crap. These people are doing what we thought of, except it’s a whole retreat center.” We reached out to them and they agreed to become our mentors.
Life gets busy with 3 kids and I was still worrying about that lung recurrence. Two days before or after my lung ablation, I finally had my VA claim accepted which lifted a huge medical burden off of my back because they’ll cover all my medical expenses. That freed up some resources.
My wife and I flew out in December to visit them as a patient and a caregiver to see what they had to offer. We really bonded with the couple. We shared our story with them. She was a cancer survivor. Her husband was on chemo for 12 years before she got with her current husband. He was a disabled veteran as well, and we really bonded.
We told them our dream and they offered to sell us the place. I went back for 5 weeks in April and March of this year to see what they meant by that, get more details, figure it out, and work on the farm. It’s also a sustainable farm that teaches food as medicine, and it has a temple that aligns with the integrative practices that I was doing, which was so beneficial to me.
After that trip ended, we came back and we now have a purchase agreement with a timeline to make that happen. We’ve got a little more money to raise and we have a timeline to do that.
My wife and I want to move our family out there, live on-site, and host cancer patients. Ultimately, it would be if we can find enough funding where it’s no cost to other people, but we’ll see how it goes once we get the next steps in place. That’s pretty active right now. We’ve formed an LLC and our nonprofit to make that happen.
What’s helped you stay hopeful throughout your cancer journey?
It’s hard to think in terms of hope when you are told you have stage 4 colorectal cancer, you’re not going to have any other options or it’s a grave diagnosis. Sometimes it’s hard to remove yourself from thinking way into the future. You have to just take it day by day. Take every day, even if it’s minute by minute, hour by hour. Do what you can to help yourself get through the day. Join support groups. That’s been such a big, thing.
The first thing you need to do is never look at Dr. Google. It’ll send you down a rabbit hole of despair. I had my first mental breakdown ever because I was looking at Google and looking at different statistics, then I started thinking about my kids. Avoid that.
Find your people. Find people that will lift you up and support you. A lot of people lose their support networks, especially once they’re out of treatment. Everyone thinks, I’m cured or thinks, you’re done. You’re never really done. Whether the physical stuff is over and the treatments are over, there’s going to be mental and emotional damage. Don’t dwell on that. Everyone goes through this with a cancer diagnosis. It’s okay to not be okay.
What advice do you have for someone recently diagnosed with cancer?
If I have any advice for anyone starting a diagnosis is, once you get diagnosed, it’s going to be rough at first. But once you get through that initial despair and anxiety, start setting goals. Future goals.
Something my integrative medicine doctor told me and it’s been my mantra ever since, he said, “Jason, set a goal and reach it. And once you reach that goal, set another one. Always keep your eye on the prize.”
Symptoms: Found the cancer as a result of family history & early colonoscopy; discovered Lynch Syndrome after genetic testing Treatment: Partial colectomy
A year away from retirement, Steve was looking forward to his final year as a Sociology teacher until a routine check-up revealed an alarmingly low white blood cell count.
Steve shares his story about being diagnosed with acute myeloid leukemia (AML), receiving a cord blood stem cell transplant, and how mindfulness meditation yoga helped him stay positive throughout his journey.
I need to start with my occupation and my profession, which I dearly loved because I spent about 40 years as a practicing sociologist. And although I’ve retired, I continue to be in love with my discipline because it’s a window into the world in so many different ways.
I used to urge my students – unless you plan to live on a desert island for the rest of your life, you really need to take sociology to understand the world that’s going to shape you. So you can be an active agent in that world and know how to respond and react.
We can look big picture of the world capitalist system, or we can micro-focus on 2 people interacting and everything in between. I find it to be a completely captivating perspective for looking at the world. I’m quite the ambassador for trying to recruit people into sociology when I’m not playing sociologist.
I’ve been to Minnesota’s Boundary Waters Canoe Area Wilderness for more than 30 trips, usually a week-long, sometimes 10 days, in the wilderness where you pack everything that you’re going to need and try to survive for 10 days in a remote wilderness area. It’s a great retreat from everything having to do with the modern technological world that we live in.
I like to play poker on the side and shoot pool with a buddy of mine. My wife and I have done a number of cruises, including the Mediterranean many times. I have interests outside of being a sociologist but that’s been my core identity for most of my adult life.
How would you summarize your cancer story?
It would underscore the suddenness with which this came over me. The only time I was in a hospital before my treatment for AML was on the day I was born in Madison, Wisconsin, in 1951. I had the honor of being the 200,000th officially registered patient at Madison General Hospital, so I was destined for something, but I hadn’t been in a hospital other than to visit people for 64 years.
I landed in a hospital very quickly and I stayed for a very long time. It was all new to me. If you would ask me to define leukemia, I couldn’t have done it. I knew nothing about it, I had no exposure to it, and I had no reason to have any familiarity with it. It was a real crash course in trying to figure out what the heck was going on and where was it going to go.
I’d give a nod to the value I found in writing my story, that was one of my basic survival mechanisms. Maybe because I’m an academic and I’m comfortable with writing, but it was more than that. Telling my story for myself and for others was a way of maintaining my sanity.
A routine check-up reveals an abnormally low white blood cell count
I kept the appointment at the last minute. Arguably, it may well have saved my life because they did some routine lab work and came back with very low white blood cell counts which was a red flag for my doctor.
It was the spring of 2016. Professionally, I was looking forward to one more year of teaching and then I was going to glide into a carefree retirement. But I had an annual physical schedule, which they always encourage us to do – go in and get your checkup.
Things were going so well, I almost canceled it. I thought, there’s nothing to learn here. I feel fine. I’m doing well. Why do I want to spend an afternoon going and doing this? But I kept the appointment at the last minute. Arguably, it may well have saved my life because they did some routine lab work and came back with very low white blood cell counts which was a red flag for my doctor.
He said, “I think you should go see a hematologist.” I didn’t know what a hematologist was, but they made an appointment. It was an office of Hematology/Oncology. I thought, what tree are these people barking up? I feel perfectly fine. Oncology is the furthest thing from whatever’s going on here.
Receiving a diagnosis
…he said in about a 10-minute conversation that I had acute myeloid leukemia (AML). I didn’t know what that was. I have 50% blasts in my bloodstream. I didn’t know what that was.
To humor my doctors, I met with this hematologist. They were also very concerned and said, “The next step should be getting a bone marrow biopsy to see if we can rule in or rule out what may be going on here.” I said, “If that’s what you think is appropriate, I’ll follow your recommendation. But I have no symptoms. I’m sure when we do this thing, it’s going to rule out whatever you think is going on that’s so bad.”
Call it confidence, call it naive, call it stupid, but there I am going in. It was a heck of a week. The biopsy was on a Monday afternoon. On Tuesday, I swam my normal 50 laps, saw a chiropractor, did some shopping, and I ate dinner out. Nothing could be more normal.
Wednesday morning, I played a weekly poker game with some retired guys and that afternoon I came home and my wife said, “That doctor called and wants you to call him back.” I placed the call thinking, again with this overconfidence, this is when they’re going to tell me everything is really fine.
Instead, he said in about a 10-minute conversation that I had acute myeloid leukemia (AML). I didn’t know what that was. I have 50% blasts in my bloodstream. I didn’t know what that was.
He said, “It’s imperative that you get to a hospital immediately. We’ve made an appointment for you at 9 a.m. tomorrow morning. Report to this hospital,” which happened to be across the metro from the west side of the Twin Cities where I live to the flagship hospital for my insurance.
The rest of that day is a blur. I can’t clearly remember it. I wasn’t scared or frightened or panicked. I didn’t have any conception of what was happening and how I should feel. Numbness prevailed through that evening.
I packed up some things, not knowing what to pack. They said I could expect a long hospital stay. The next morning, my wife and I drove across the metro.
Like me, she had no idea how to react and what this meant.
What was it like not knowing much about your diagnosis?
It’s the “Fast and Furious’”of blood cancers. It’s the deadliest of the blood cancers. I’ve heard people say, without treatment upon diagnosis, life expectancy can be measured in weeks or months if you’re lucky. It’s that fast.
My first reaction was not to go on Google and look this stuff up. Intuitively, I knew that was not a wise thing to do. In fact, throughout my early treatment, I remained naive about what this disease was and what course of treatment I could expect. In an odd way, I think that served me well until I needed to hear the hard story about what this is and make some decisions.
I was glad I didn’t know much going in because I think it would have been overwhelming. There is some research that’s been done specifically on AML patients that finds, the more they know about their prognosis, the more stress they feel and the more physical symptoms they experience. Depression sets in.
It’s not a pretty story. It’s the “Fast and Furious” of blood cancers. It’s the deadliest of the blood cancers. I’ve heard people say, without treatment upon diagnosis, life expectancy can be measured in weeks or months if you’re lucky. It’s that fast. Not learning all of those facts about AML until I needed to know them to make decisions about treatment, served me well.
Hospital Stay
Did the doctors tell you how long you’d be at the hospital?
They said weeks, but they didn’t specify much more than that.
Once I got my feet under me, I wanted to be a proactive patient and know everything from a scientific perspective. How does this disease work? How does my treatment work? I wasn’t curious about the prognosis. It was that division of labor – I want to know these things but not that thing.
Transferring to a local hospital
We drove across town, we arrived at the hospital, and we spoke with a very good oncologist. What I appreciated is he got to know us as people and not just as a potential patient.
At one point he said, “I think we could take good care of you here, but you probably want to be treated closer to home because of all the back and forth that’s going to be going on for you and all the people visiting you. I know someone across the Twin Cities, an oncologist. I can give her a call and see if she might be able to take you on as a patient.”
It took a couple of hours, but the connection was made so we drove back to a hospital much closer to town and checked in. There were some delays here and there, but that’s pretty typical in hospital admission.
Watching the medical workers was reassuring
They said I would be going to room 4-East-3. I envisioned I was going to be in someplace called room 4, in bed 3 in a barracks-style room, like an old war movie. That’s how little I knew about hospitals. It turned out I had my own room. It was fourth floor, room 3 in a very interesting hospital space where there was a central nurse’s station and about a dozen patient rooms in an oval shape around that nurses station.
I ended up liking that because I was a person that wanted to keep my door open. I wanted to see what was going on. I wanted to hear the chatter. I wanted to be connected to something larger than just my hospital room.
The more I thought about it, I realized being able to watch the nurses and the doctors go about their business in a perfectly normal way, as if this was a routine day at the office for them…I don’t know what’s happening to me. I don’t know what’s going to happen to me, but as I watch these people go about what they’re doing, they seem to know what they’re doing. I can tell they’ve done this before. I feel like I’m in good hands. It was really reassuring just to have that connection from the very first day.
I wanted to see what was going on. I wanted to hear the chatter. I wanted to be connected to something larger than just my hospital room.
Describe how your wife ended up in the hospital while you were there
I ended up in this hospital on Thursday afternoon.
Another side story that I should share because it was pretty impactful – my wife wanted to stay in my room that night to keep me company. I said, “There’s no good place here to sleep. You might as well go home.”
She got up out of one of those huge recliners that they have in hospital rooms and her right leg buckled under her and she winced in pain. We didn’t know what was going on. She limped out of the room and off she went.
The next morning, I get a call that she can’t get out of bed, the pain is so bad. She calls her sister, her sister comes over, they call 911, and they send an ambulance. An hour later, she arrives at my hospital in an ambulance at the ER.
It turns out she has a hairline fracture in her femur bone and she’s going to need surgery so she checks into my hospital and gets a room 2 floors above me. She stays there for a week. During that same week, I start my chemotherapy treatment. I checked into the hospital on Thursday, Sue checked in on Friday night.
Chemotherapy
Starting chemotherapy
I started chemotherapy, it was called 7+3. It was the standard of care at the time. A week-long infusion of cytarabine and another medication called idarubicin.
I don’t think I saw my oncologist until Saturday after I started chemo. That was when she began to lay out what was going to happen in the short term. She said, “You can expect to be here for at least a month. Because this chemotherapy is going to create a lot of side effects, you’re going to get really sick. You’re going to have infections and fevers. We know how to treat them, but they’re serious enough that we’re not going to let you leave here until you get through that process.”
From the first day or 2 that I was there, I had a short-term sense of what was going on. They were vague discussions after that. “You’re going to need more treatment, but we’ll cross that bridge when we get to it.” They really wanted me to focus on this first round of treatment because the goal is really just to stop the leukemia. Ideally to get into remission, and that’s going to buy you enough time to then consider what are my options. What comes next?
What were the effects of 7+3 chemotherapy?
I’m glad I didn’t know this at the time, but they say the chemo I had was really harsh, really brutal, and really wicked. It was nasty. They didn’t tell me that at the time. They said this is the treatment, and I said, okay, let’s do it.
My oncologist said about day 10, these things will begin to happen. I got to day 10, I’m doing fine and I’m cocky. The next day, everything just hit the fan. Colitis, E. coli infection, full body rash, headaches, fevers, diarrhea. You name it, I had it. She was exactly right, she was just off by 1 day. For about 2 and a half weeks it was awful.
Collaborating with doctors to find the best treatment
I gained a real appreciation for infectious disease doctors. These people would come in every day and say, “What are your symptoms today?” I’d rattle them off and they’d say, “This antibiotic, we can get one that’s a broader spectrum. We don’t know exactly what’s going on. Let’s switch it out for this one.” Same with the antivirals, the antifungals.
At a couple of points, it was more like a collaboration because they couldn’t figure out exactly what was causing the side effect. I remember one day saying, “I’ve been on that antifungal medication from the very first day, and somehow I think that’s complicit in some of these side effects.” And they said, “Okay, we’ll switch it out with something else.” That problem got a little better, so it was nice to see I could have a voice, I could have some input, and that on some questions, they just don’t know.
There are so many different symptoms going on that could be many different things, and people react differently to drugs. I felt like it was an experiment in itself to find what medications and what combinations would do the best to get some of these symptoms under control.
How did you take precautions to avoid infection?
They gave me medicated body wipes I’d have to use several times a day. Any possible source of the infection, I had to control it. Wearing masks long before they became fashionable with COVID, hand washing – they urge that completely. If I ever left my room without my mask, they dressed me down and said, “You can walk the halls, but you got to have that mask on.”
I learned a lot about controlling infectious diseases. Not that it prevented most of the things that got me. I also learned some of the things that got me had been living in my body my entire life. They said that’s probably true for the E. coli bacteria. After the transplant, I had a flare-up of the cytomegalovirus. They said that’s probably been in your body your entire life. If you have a functioning immune system, all that stuff is kept under control. But without it, they run rampant.
I had several visitors. They always had to be masked and keep some distance. It was a fairly spacious hospital room and they didn’t stay for a long time so that was quite manageable.
How did you occupy your time during your hospital stay?
What I appreciated the most is throughout this period I was able to leave my room and walk the halls with a mask. Later at my transplant hospital, it was more confined to quarters for 2 and a half to 3 weeks. But at my initial hospital, the first week when I was receiving chemo, I could leave my room with the chemo on an IV pole, but only walk through the cancer ward on the fourth floor and no further in case there was a spill. They knew how to deal with it, but the rest of the hospital, not so much.
To be seen, recognized, and acknowledged as a full-fledged ambulatory person and not just a sick patient in a bed really meant a lot.
Once I was done with the chemo, I explored every nook and cranny of that hospital. I was on different floors. I walked it from one end to the other. I walked out the front door to put utility bills in the mailbox up by the road. Walking was one of my basic survival strategies. It felt so good to get up and move and to see other people.
After a couple of weeks, the nurses said, “We’ve been watching you and we think you’re walking about 5 miles a day, 3 separate times per day.” That just became my routine. The best part of it was, as I walked past different staff and nurses in different parts of the hospital, they’d recognize me and I’d recognize them. We’d wave, chat, and smile and we’d share a couple of stories.
To be seen, recognized, and acknowledged as a full-fledged ambulatory person and not just a sick patient in a bed really meant a lot. I’ve told nurses that I hope they appreciate that something as simple as a smile or a wave or just some acknowledgment of recognition can mean a whole lot to a patient when they’re vulnerable.
Did anything help you cope with your diagnosis?
Right at the top of the list would be the combination of practicing mindfulness meditation and yoga. The really serendipitous thing is about 2 months before my diagnosis, I received a flyer promoting a community education class on these topics. I thought, I’ve dabbled around with meditation and yoga and I’ve never done it seriously. I’m not very good at it, but I’m going to take this class. It was a time in my life when I really needed to incorporate that into my daily activity.
About 8 weeks before my diagnosis, not knowing it was coming, I was meditating, I was doing yoga. One of the gurus of this approach, Jon Kabat-Zinn, has said we can change the way our brains are wired in as little as 8 weeks of systematic practice. It was about 8 weeks before my diagnosis hit.
For most of my life, I could be mistaken for a chronically anxious, anal-retentive, obsessive-compulsive control freak. You would think cancer would throw me through the roof and it was almost the opposite.
I know a lot about staying in the moment, rhythmic breathing, staying in touch with my body, yoga, and the body scan. From the very first night in the hospital when things finally quieted down and Sue left and the lights go out, it was like, if the demons are ever going to come it’s at night. I did a body scan and I started with my toes, my ankles, and my feet. By the time I got to my torso, 15 minutes later, I fell asleep.
I did that every night in the hospital and I never lost any sleep to anxiety. The nurses came in at all hours and people came in for medication checks and vital signs, so you can’t sleep in a hospital anyway. But it was never from fear or anxiety because I had this powerful tool to deal with it.
Being treated like a person rather than a patient
I was deliberately a proactive patient. I sought out those relationships with nurses and when you’re there for 37 days, you have a chance to do that. They got to know me as a real person, and that was tremendously important for all the reasons we’ve just discussed.
Every couple of days I’d be sent down to imaging for an x-ray or a CT scan and an orderly would show up at my door with a wheelchair ready to take me to imaging. I would say, “I’m walking 5 miles a day in the hospital. I know where imaging is just as well as you, so I’m going to walk.” Sometimes they would say, okay. Other times they would force me to get in a wheelchair. I really resented that because I was being treated as a generic patient and not the individual that I am.
When I got to the imaging, [it was] kind of the same thing with the techs. I’m the 93rd person they’re doing today so they treat me very generically. It was very alienating till I got back to my room and my familiar nurses. It was like, okay, now this is home. You’re my people. We’re back on track.
What was it like being without your wife during your hospital stay?
She was in the hospital with me for the first week, but then she went to a transitional care unit (TCU) for a month of rehab. We learned how to do FaceTime and various kinds of screen-sharing things, but it was very weird and very artificial. No one looks good on a little tiny phone screen. Some of the communication was kind of minimal, but we both had our own struggles to bear.
She has a sister who lived in town, and she was a crucial go-between. She would take things back and forth, bring the mail to me, and the newspapers to her. Having someone like that is a lifeline to keep our lives connected. That helped a lot.
What was returning home like?
It was a whole month after [Sue] left for her TCU and I went through my remaining month of hospitalization. After 5 and a half weeks, she came home 1 day before I did. Our home had been unoccupied for roughly 5 weeks. Open the refrigerator and it was like a petri dish, so we had to clean that out.
Gradually we got back to a little bit of normality as I had to figure out what’s the next stage of treatment and where is this eventually going to go. She still had a fairly long recovery, but at least she could be home and maneuver a lot of the time. We shook our heads like no one was going to believe this happened to us.
At the same time, there was that little storm that hit about 3 weeks into my hospital stay. That was an interesting thing to learn from my neighbors. One night they emailed me photos of 2 60-foot trees that fell down on our house while it was unoccupied. I was dealing with a tree service, contractors, and roofers remotely, trying to get the trees out of there and the house repaired. That all took care of itself.
In my family, there was an old saying that bad things happen in threes – my cancer, Sue’s broken leg, trees falling on the house. It should be clear sailing from here out. Not exactly, but it helped to think that way.
Eventually, I decided if I went the chemo route and it didn’t work out, I would always regret not trying the transplant. And if I did the transplant and it didn’t work out, it would at least feel like I gave it my best shot, so I really committed to the transplant.
What triggered my release from the hospital was my immune system came back up. 4 weeks in, they did a bone marrow biopsy and they said there was no cancer. Huge achievement, but this is a cancer that always comes back so we’re on to the next step.
In a nutshell, they said, “We need to wait for the genetic and molecular analysis of your cancer, and that will put you in either a fairly favorable risk profile or an adverse risk profile. If it’s the former, you’ll probably get by with more chemo. If it’s the latter, you’ll probably need a stem cell transplant.” I thought, here’s a fork in the road. The decision will make itself.
When the results came back, they said, “You’re actually in an intermediate category. You’re not in either one, so there’s no clear path forward. We’re going to send you to the University of Minnesota Medical Center where they do transplants.”
I had a 3-hour tag team meeting with nurses, social workers, and a transplant oncologist. Thankfully, she just laid it on the line. She said “You need more treatment. You need consolidation after your induction treatment. Chemotherapy has a 5-year survival rate of 33%, but a lot of patients can’t tolerate how toxic it is so they have to stop before it’s over.” My thought was, I hope you have something better than that.
They said the transplant has a 5-year survival rate of 50% but you have to first survive a 15 to 20% mortality rate from the procedure itself because it’s so brutal. That was like Russian roulette. Six chambers, one bullet. She said, “If you want the transplant, I’m happy to do it. Otherwise, I’ll refer you to someone else if you want to do the chemotherapy route.”
I went back to my original oncologist and laid all this out. She reiterated the risks and potential benefits of both options, but she wouldn’t give a recommendation. Bless her, my wife Sue said to my oncologist, “If Steve was your husband, what would you want him to do?” And she said, “Get a transplant immediately.” That reinforced the notion of transplant.
I got second opinions from doctors at the Mayo Clinic. Eventually, I decided if I went the chemo route and it didn’t work out, I would always regret not trying the transplant. And if I did the transplant and it didn’t work out, it would at least feel like I gave it my best shot, so I really committed to the transplant.
Joining a clinical trial for stem cell transplants
Then we needed a donor. They tested my one and only sibling, my brother. He was a half-match, which is workable but not ideal. The doctor said we could consider umbilical cord blood as a donor source. I was like, “Am I in a science fiction movie?” I’d never heard of that. They reassured me it was a real option. Again, I said, “Okay, you’re the expert.”
Which is better? They said, “We don’t know, but we have a clinical trial to find that out and if you want to join the trial, you can do so.” I read a 22-page consent form, asked some questions, and agreed to the study.
I was randomly assigned to the cord blood arm of the study rather than the half-matched brother arm of the study. My brother was off the hook and at that point, I knew I would be headed for a transplant.
I knew the facility, I knew the donor category, and it was a matter of staying in remission. I had a week of consolidation chemotherapy to keep me in remission until we could get to the transplant.
Delaying the transplant
I went through a workup and tested all my vital organs, [which] I passed. I checked in for the transplant at a different hospital in early October. The day I checked in, I happened to mention to the nurse I had some symptoms like a cold or a mild infection. She said, “Let me get a doctor in here.”
This doctor comes in, and he says, “I’m going to cancel your transplant. You have an infection and we want you to get over that infection before we do the transplant.” I must have looked really disappointed because he told this story that many years ago, they admitted someone with my symptoms, and administered pre-transplant chemotherapy. The patient became immunocompromised, developed pneumonia, and died before he could get to transplant. I said, “Okay, I like your logic.”
A week later, my infection cleared up. I came back and checked in. It started on, what they call, day minus 7. One week before the transplant, you have a countdown to the transplant date.
Describe your stem cell transplant
…you have this waiting game of, will one of my donors graft? How will I respond to the new immunosuppression? That begins a whole new chapter in the saga.
They administered cytotoxin, which I later looked up and realized it’s actually derived from the mustard gas used in chemical warfare in World War 1. Along with another medication called fludarabine and total body irradiation. That’s to wipe everything clean – wipe out my bone marrow, wipe out any residual leukemia, and prepare my body to accept the donor cells.
Transplant day came. Talk about a non-event after everything that you go through. A stem cell transplant just means a nurse brings in a bag or 2 of blood, hangs it on an IV pole, attaches a tube, and flips a switch. That’s it. Once you get to that point, it’s the simplest thing in the world.
Then you have this waiting game of, will one of my donors graft? How will I respond to the new immunosuppression? That begins a whole new chapter in the saga.
What advice would you give someone considering a stem cell transplant?
Read and try to understand as much of the write-up that they give you. Ask as many questions as you can.
In my case, it was a relatively easy decision because I was going to have one of these two treatments anyway. I could have chosen and said I want my brother or I want the cord blood, but by going into this study, I left the decision up to their randomization process. Maybe I contributed a little bit to the progress of science but it was such an even trade-off that I couldn’t find a basis for making a decision myself.
Both paths had different strengths and weaknesses. With cord blood, you’re a little less likely to have graft versus host disease because the cells are naive. They’ve never lived in another body but it can take longer to engraft with a half-matched donor. As someone once said, when his cells get in my body, half of them are going to recognize my body as foreign and there’s a much greater chance of graft versus host disease, but that tends to be earlier engraft.
It was a real toss-up. If I’d had a clear indication that either was better, I would have gone for it. Since I didn’t, I said put me in the trial. It was a very passive trial. They followed my outcome along with several hundred other people and ironically they concluded that the half-matched donor was marginally better than the cord blood. But that’s a generalization. I was one person and my cord blood transplant worked tremendously. It couldn’t have been better. I got all the benefits and none of the downsides of cord blood transplants.
Life After Cancer
Did you not have any side effects from the transplant?
Only if you overlook the first 3 months after the transplant. I was in the hospital for 27 days one week before transplant, and then 2 and a half weeks after transplant. They let me go earlier than expected, but I was doing reasonably well so I came home.
I needed a caregiver with me for at least the first 100 days, preferably longer than that. Since Sue wasn’t entirely able to fulfill that role because of her own medical issues, I recruited a 5-week rotation. My brother came and stayed with me for a week, then an old college friend, then my brother came back, then my college friend’s wife, then my brother came back.
For 5-weeks, someone lived in our house 24/7 in case something happened that needed a quick response. None of that really happened, but they drove me back to the clinic every day for the first month.
It always started with a blood draw. They’d say, “Your platelets are a little low. You need some red blood. Today you’ll be here for 4 or 6 hours to top off your fluids.” Gradually those things became less frequent.
The first month, I had unimaginable fatigue from the transplant and the engraftment process and the residual effects of the medication, a fair amount of nausea, bone aches as the engraftment happened and just generally feeling out of sorts.
I was on anti-rejection medication that was suppressing my immune system so the engraftment could take place. That left me open to all kinds of other infections. They talk about getting through the first 100 days, and I didn’t fully appreciate what that meant.
At that appointment 100 days out, they said, “We’re going to begin to taper the anti-rejection medication, but we’re going to do it very slowly over a 3-month period so that your body can slowly ramp up its own immune system. We don’t do it so quickly that graft versus host disease rears its ugly head.”
I likened it to, I’m old enough to learn to drive on a stick shift, and you have to put the clutch down and the accelerator in a certain pattern. That’s exactly what they did. I still had a lot of side effects but nothing catastrophic. It worked out very nicely.
Did your donors engraft after the transplant?
Two days after I left the hospital, I came back for my first post-transplant bone marrow biopsy. That’s when they discovered one of my 2 cord blood donors was 99% engrafted. That was really early for a cord blood procedure.
Before the transplant, I had this odd sensation that my life depended on – I thought of them as 2 kids, really mothers, who donated umbilical cords. I knew that one of them was a baby boy and one of them was a baby girl. I wanted to be on better terms with them, so I named them. I named the boy Ralph and the girl Gwen.
They could determine 3 weeks after the transplant that Ralph had engrafted 99%. Gwen had kind of faded away, which is typically what happens. I felt bad using up 2 donors, but they don’t know ahead of time which one might engraft, and the protocol called for 2 so we did that.
My oncologist later said Gwen, even though she disappeared, may have played a role because for a couple of weeks, they were both circulating in my blood system and they were competing for dominance. Gwen was like a sparring partner that toughened Ralph up and got him to be more effective in battling an infection. Then she went on her way and Ralph made a home for himself in my body.
The first year after the transplant
At the 6-month appointment, my transplant oncologist called me a statistical outlier because the likelihood of early remission, full engraftment, and no graft versus host disease happening together is less than a 10% probability.
At the 6-month mark, I was off the anti-rejection medication. I was starting to feel human again. At 9 months, I was invited to give a keynote address for a fundraiser for my transplant unit in front of 400 people on a sun-kissed July morning in an urban lake. It was really sweet.
One year out, we got our childhood vaccinations redone from dead sources. Two years out, we got our childhood vaccinations from live sources, and by that point, it was obvious I was in the clear and have been ever since.
At the 6-month appointment, my transplant oncologist called me a statistical outlier because the likelihood of early remission, full engraftment, and no graft versus host disease happening together is less than a 10% probability. The numbers are impressive, but when she said this is as good as it gets, that was the stamp of approval that I’d come through this thing. At that 6-month mark, I was able to accept the fact that I’d really made it and I was going to be around for a while
From cancer patient to cancer survivor
That was a crucial moment. That was the day I changed my understanding of my identity from a cancer patient to a cancer survivor.
It still felt like there was a shoe up there that could fall at any time.
At that 6-month appointment, not only did everything look good, but I said to this oncologist I’d seen daily, then 3 times a week, then twice a week, then once a week, and then once every 2 weeks, “When should I see you again?” Her response was, “Maybe 6 months.” That was unnerving. It’s like attachment disorder. You’re letting me go. You’re cutting me loose. But she said, “Steve, it’s a good thing when you don’t need to see your doctor.”
That was a crucial moment. That was the day I changed my understanding of my identity from a cancer patient to a cancer survivor. There could always be a relapse, all kinds of things could happen. This is the time that demarcates having cancer and treatment and getting beyond it. I tried to capture it in some writing I did, and the phrase I came up with was I was experiencing serene euphoria. I didn’t want to shout from the rooftops, I just wanted to quietly let this feeling wash over me, take it in, and embrace it.
Shortly thereafter, I began thinking I need to find ways to give back. Therein I launched what is now a 5-and-a-half-year volunteer career. I’ll never repay the debt to the people who saved my life, but it’s a lot of fun trying and it’s very gratifying to do the things I’m doing in the cancer community.
How did your doctor’s positive words make you feel?
It was a great relief. I joke that I’d always been pretty good at taking tests as an academic. This was like a test, but unlike anything, I’d ever been through. Feeling incredibly fortunate, incredibly lucky.
I’ve written a bit about, who gets cancer, why they get it, and who survives. You can point to all kinds of reasons that probabilistically make a certain outcome more likely, but I’m convinced there’s a certain element of random variation and luck in these outcomes. I’ve learned a lot about that.
Frankly, as a poker player, I think there’s a lot of poker wisdom that applies to the decisions you make when you’re going through treatment. As in poker, so in medicine.
You can make a good decision with the information you have at the time and you can still get a bad outcome. That doesn’t mean it was the wrong decision. It just means you had incomplete, imperfect information. Things are constantly changing, so don’t beat yourself up if the outcome isn’t what you hope for, you still may have made the right decision. That was helpful to think about it that way.
Reflections
Turning gratitude into giving back
There’s a depth of gratitude, that I never experienced before. People always say to be grateful. That’s a great thing. That’s a mentally healthy thing to do. I understood it when I had this to be grateful for. That’s a big part of what fueled the work I’ve done since.
It started with these peer connect programs where, as a transplant survivor, I would be linked with newly diagnosed patients to talk to them on the phone. For 2 and a half years until COVID struck, I did this back at my transplant hospital.
I’d walk into patient rooms and say, “I’m a volunteer.” They go, “Yeah, yeah, what now?” I’d say, “But I’m a transplant survivor.” Suddenly they would perk up. They would sit up straight, they would invite me in, and we’d have these incredibly personal conversations between 2 complete strangers. But we shared the bond of transplant. That’s quite a bond to share.
There’s a depth of gratitude, that I never experienced before. People always say to be grateful…I understood it when I had this to be grateful for.
The importance of trusting your medical team
Be as well-informed as you possibly can be. Be a proactive patient. Trust your medical team if they’re trustworthy. And if they’re not, if you don’t have a comfortable relationship with your medical team, think about whether you need to make a change because that’s really critical.
All kinds of sources of information are out there, but no one knows you the way your own medical team does in terms of the specifics of your disease and your mutations. You really have to put your fate in their hands and hopefully, you have good hands to put them in. I certainly did.
What led you to write your memoir?
I found great benefits from writing my story. I started sending out emails to people. I wrote 65 very long emails to a group of roughly 100 people over 18 months and turned them into a memoir. That was never my plan. Six years later, I’m still writing quarterly updates. I’m working on another book, so writing is obviously therapy for me.
It started by wanting to keep people informed, but I quickly realized needing to tell a coherent story of what I’m going through requires me to understand it better than I have up to this point. It’s kind of like the old adage – if you really want to learn something, teach it. That’s what this felt like. If I’m going to tell my email recipients what’s going on, I need to get it straight myself.
The social scientific part of me enjoyed that process of constructing a narrative that made sense. Initially, so they knew what was going on, but [then I] realized this is therapeutic for me. I’m a sense-maker. If I can make sense of something, even if it’s bad, I can deal with it. If it doesn’t make sense to me, then I’m at loose ends.
The power of mindfulness and meditation
If you can just live in the moment, you’re going to have as rich a life as you possibly can have and the outcome will be what the outcome will be.
I would encourage people to incorporate mindfulness and all its different manifestations. One thing I learned from mindfulness had to do with what’s called scanxiety. You have an upcoming test or scan and people get understandably anxious.
It occurred to me that if I get all bent out of shape because I have a test or a scan coming up in 2 weeks and it turns out fine, I just wasted 2 weeks of my life getting tied up in knots over something that hasn’t even happened yet, which is really odd if you think about it. If it turns out that it’s bad, that proves to be anxious doesn’t prevent a bad outcome. So there’s no reason to be anxious if you can logically train your mind to think that way.
I got pretty good at doing that. People are bedeviled by fear and anxiety. I’m not implying in any way it’s a simple thing, but to whatever extent you can live in the moment and let each moment come and have some confidence that you and your medical team will know how to deal with that moment if and when it comes…It doesn’t guarantee that all is going to go well, but it’s a much happier way to pass the time.
If you can just live in the moment, you’re going to have as rich a life as you possibly can have and the outcome will be what the outcome will be. It’s like a poker hand. You might win, you might lose. You do everything right and have a bad outcome. You might be lucky and have a good outcome, but that’s in the future and you can’t know the future. So don’t get into a wrestling match with things that haven’t even happened yet. Keep your feet anchored in the present moment.
Everything that goes along with mindfulness meditation and yoga is a really good way of embodying that. As you work through the yoga poses and the breathing, it really keeps you centered. I don’t want to proselytize because that’s just not for some people, but I’ve heard a remarkable number of patients in the cancer community endorse the notion of mindfulness meditation and yoga.
Connecting with people through humor
I hung onto my sense of humor relentlessly. That was really important to me, and that’s not a joke. Every email I sent out, I ended with a joke because I wanted to lighten the burden of these sometimes very dire stories I was telling people.
Humor kept me connected to people. There were people who I’d known on and off throughout my life. They didn’t know how to relate to me as a cancer patient, but they knew they could share a joke with me and that maintained our connection. Humor can be a very serious survival mechanism.
Do you think positive thinking led to your outcome?
People gave me credit for my positive thinking and that’s why I had a good outcome. I never liked that. If I hadn’t made it, would they say I wasn’t positive enough? I think positive thinking is fine if the patient can find their way to a version of it that works for them. But if it’s other people telling you you have to be positive, what they’re really saying is, you can’t have any negative emotions. You can’t have down days, you can’t express this or that, and that’s not the way it goes.
Cancer patients need as much agency as they can possibly find. They don’t need to be told by other people how to react. So positive thinking is fine if you find your way to it and it works for you, but not as a gospel that gets hammered into people’s heads.
I’ll never know if all those strategies I employed contributed to my positive medical outcome. I do know they allowed me to live as fully, through all these days and times and processes, as I possibly could. That sustained me.
Cancer patients need as much agency as they can possibly find. They don’t need to be told by other people how to react.
Discovering a common core humanity in everyone
I witnessed a degree of resilience in a broader span of people than I would have imagined. It’s striking how tough people can be in these circumstances. Many of the people that I talk with, especially in the transplant community, had a much tougher ride than I did. Yet, their ability to find their own coping mechanisms and persist is really quite remarkable.
This may sound corny, but I’ve seen a lot of people at their worst and it’s attuned me to the fact that there is a common core humanity. It doesn’t matter if the person undergoing this process is male or female or an ethnicity or what have you. At some fundamental level, we’re all pretty similar and I didn’t quite fully appreciate that until this process.
Sociologists talk about how in social life we present a certain self to others. We’re like actors conveying through impression management a certain sense of who we are. That’s pretty hard to do in a hospital bed when you’ve got all these things going on.
I’ve had people in conversations where the guy says, “I really like talking to you, but I got to go throw up. Can you hang on till I’m done?” He goes and throws up and comes back and we continue our conversation. Well, there’s not much presentation of self going on. You’re down to the core sort of reality of who people are. It kindled in me a tremendous amount of empathy that I hadn’t quite found, along with gratitude, and the ability to empathize with what people go through.
I have to put in a pitch for a short video called Empathy by the Cleveland Clinic. For about 4.5 minutes, a camera pans through a hospital, these people are walking by, and you can’t tell from their facial expressions what’s going on. There’s a little caption underneath that says, “Just learned his condition is terminal.” The next person comes by and it says, “Found out his mother’s going to survive.” You see these people from the outside and it’s not clear what’s going on, but it could be a million things. It’s a powerful video.
This may sound corny, but I’ve seen a lot of people at their worst and it’s attuned me to the fact that there is a common core humanity. It doesn’t matter if the person undergoing this process is male or female or an ethnicity or what have you. At some fundamental level, we’re all pretty similar and I didn’t quite fully appreciate that until this process.
That reinforced this empathy I was finding from the range of people I was talking to, the diversity of those people. Yet, underneath that diversity, there’s a small core element of humanity that shows up in everyone. It was very moving.
The value of caregivers
Caregivers oftentimes absorb more stress than patients themselves, so kudos to all the caregivers out there. The importance of caregiving needs to be acknowledged and recognized.
What advice would you give to other cancer patients?
For patients, they say it doesn’t build character as much as it reveals character. It doesn’t change you into a totally different person, but it calls for the kind of person you are. Many people have learned coping strategies, survival mechanisms, and resilience strategies. Something like this really puts them all to the test.
So if you can find those, if you can marshal those, if you can bring them to the fore, surround yourself with a supportive community, get yourself a good medical team, try and find a reasonably optimistic and hopeful stance and maintain that stance through whatever coping strategies work for you, being as physically active as possible, doing mindfulness meditation yoga, being a proactive patient, don’t be a dependent variable, be part of what’s going on, have a belief system you can fall back on…
For a lot of people, that’s religion. That’s not especially my approach. I had a scientific secular worldview that was filled with curiosity and interest and wanting to understand how things work. When my doctors would explain it to me, then it was like, now I understand where I’m at and where I’m going.
Writing your story in whatever form works for you. I’m doing a writing workshop with the Leukemia Society right now and people are having some incredible insights writing and sharing it with one another. It’s a powerful tool.
I could plug a book by a doctor named Annie Brewster called The Healing Power of Storytelling. It’s the best thing I’ve ever read on how telling your story can help maintain your humanity in the face of whatever life throws at you.
