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Diffuse Large B-Cell (DLBCL) Non-Hodgkin Lymphoma Patient Stories

Barbara’s Stage 4 DLBCL Non-Hodgkin’s Lymphoma Story

Barbara’s Stage 4 DLBCL Non-Hodgkin’s Lymphoma Story

After beating breast cancer 20 years ago, Barbara was alarmed when faced with having cancer again, this time with stage 4 diffuse large B-cell lymphoma (DLBCL).

She shares her journey of first symptoms, sharing the news with her family and granddaughters, and undergoing treatment.

You can read her in-depth story below and watch our conversation on video. Thank you for sharing your story with us, Barbara!

  • Name: Barbara R.
  • Age: 72
  • 1st Symptoms:
    • Abdominal pain
    • Gastric pain
  • Diagnosis:
    • Non-Hodgkin’s lymphoma
    • Diffuse large B-cell lymphoma
  • Treatment:
    • R-CHOP
    • CAR T-cell therapy
    • Study drug CYT-0851
Table Of Contents
  1. VIDEO: 1st Symptoms and DLBCL Diagnosis
  2. VIDEO: CAR T-Cell Therapy and Radiation Therapy
  3. VIDEO: Clinical Trials

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


VIDEO: 1st Symptoms and DLBCL Diagnosis

Introduction

Tell us about yourself

I’m 72 years old. I had breast cancer 20 years ago. I’m a really active person and avid gardener, and I sailed for 42 years. I have 2 little granddaughters, lots of friends and family, and a wonderful husband.

What were your first symptoms?

They were gastric pain, stomach pain and abdomen pain. I brushed it off. I thought, “It’s just acid stomach. Whatever I ate isn’t agreeing with me.” I had some other health issues going on at the same time, so it just got set on the back burner for probably too long. 

Finally, I went to my PCP doctor, who referred me to a gastroenterologist to get to the bottom of it because it was really increasing worse and worse to the point where I couldn’t get in a comfortable position. It just went beyond a stomach ache, so I knew something was wrong.

How did your gastro specialist communicate the results of your endoscopy and biopsies?

I think it was right after the endoscopy. He said, “Everything went fine. I did see a polyp that I biopsied. It’ll take a few days, and I’ll get back to you.” 

I thought, ‘Okay, I got through the other cancer. I’ll just get through this one.’ I was just sort of ready to take it on because that seemed like the only choice I had.

Apparently, it took more than a few days, but he was concerned because he ordered a CT scan after that, and there was what looked like a mass on the head of my pancreas. That was alarming enough to call me and say he suspected pancreatic cancer, which alarmed me and my family.

I decided I needed to go to a good cancer center. I called Cancer Care Alliance in Seattle, and I set up an appointment and a team for the pancreatic cancer. Then just a few days before my appointment, that gastroenterologist called and said, “Since we have the biopsy report, it’s not pancreatic cancer. You have non-Hodgkin’s lymphoma.”

The DLBCL Diagnosis

How did you process the possibility of having cancer again?

I was alarmed. I knew the severity of pancreatic cancer, and I just wanted to get into treatment right away the next day. The Cancer Care Alliance actually pushed me right into the system, and then as soon as they found out that it was a different diagnosis, they switched me to the hematology department.

I was not totally unhinged. I thought, “Okay, I got through the other cancer. I’ll just get through this one.” I was just sort of ready to take it on because that seemed like the only choice I had.

Receiving the DLBCL diagnosis

The oncologist that they set me up with at the cancer center ordered a PET scan before I even saw him. Just a couple of days later, I had my appointment with him. He went over what the cancer was. 

It was stage 4, but you can treat that blood cancer at stage 4. He also went over the R-CHOP. “This is what we’re going to do first.” I just got it in my head that okay, we’ll do this.

»MORE: Reacting to a Cancer Diagnosis

Did you think about getting a second opinion?

For one thing, I knew that was probably the best cancer center in the Seattle area. My daughter-in-law had worked with them for quite a few years in the hematology department, and she was confident. She said, “This is the place you need to be,” so I didn’t really question that.

Treatment options for DLBCL

It was more or less, “R-CHOP is the way to go. This is what we do. We start here.” He didn’t say that this was the only option. He just said this is where we’re going to start.

I was just accepting the diagnosis and treatment, and I was confident I was in good hands.

Emotions From the Diagnosis and Treatment

How did you break the news to your family and friends?

My husband was with me for the appointment, and I believe my daughter-in-law was on speakerphone. She did that for my first appointment. I have a small family, just a son, his family and my husband. I have a brother, and my husband has a brother. We waited for a while to discuss that with them until we knew more about what everything entailed. I didn’t want to alarm everybody. With my friends, I didn’t go into that for a while.

»MORE: Breaking the news to loved ones

Getting a port placed

There’s always fear about an invasive procedure. I’ve been through it before with my breast cancer. I’m a really calm person. I know it’s hard, but my advice is just to try not to be overly anxious. 

They give you painkillers. It’s really a fairly easy procedure. It’s right under your skin and doesn’t take long, so I didn’t have a problem with it.

What was your reaction when they said R-CHOP was too dangerous because of your elevated liver enzymes?

That actually was scary to me. My husband had dropped me off. It was going to be a long day. We live about an hour away, so he was going to go home. When they told me they had to hospitalize me, it was almost a panic reaction, which I never do. But I had no car. I had no bag with anything I needed for the hospital.

I wasn’t prepared mentally for that at all, and COVID was really strong then. Nobody wanted to be in the hospital. It was scary. They assured me, “We have our own ward. There’ll be somebody right there to take you,” which all was true. They arranged for me to have a ride, but there was just that moment of panic. They were putting me in the hospital. I wasn’t mentally prepared for that at all.

How did you get through the isolation and hardest moments?

The hardest times were felt by everybody. Everybody was isolated in the beginning, so I didn’t feel like I was affected any more than anyone else. As the months went by, especially when people got their COVID vaccines, I was told that my immune system might not react well to the vaccine. Then I started feeling more isolated.

My husband did all the grocery shopping and did all the errands. Actually, to some point, it’s still that way. I have gotten a second set of COVID vaccines and Evusheld prophylactic shots, which makes me feel a lot better. 

I did see my immediate family. My daughter-in-law was vaccinated right away because she worked in healthcare. I just had the few people, after they got their vaccinations, whom I would see but not in public places.

DLBCL Treatment and Side Effects

How did your first cycle of treatment go?

It was alternate drugs that they had abandoned because R-CHOP was better. But since they couldn’t do it and the side effects meant they had to watch more closely, that’s why they hospitalized me. I think I was there a week.

The one thing that bothered me more than the first time was my little granddaughters, because it’s hard to hide what is really going on with Grandma.

What were the side effects of R-CHOP?

I experienced nausea. Then I got the nausea pills down so that I knew when to take them. It just takes experimenting, and I think it’s different for everybody. That took a while. I remember getting dehydrated and having to go to the clinic for a fluid IV. There were rough spots with the nausea and vomiting.

Once that was under control, my appetite went down, but I did eat. Then I think as far as others, I had a side effect with skin flaking. I don’t know if anybody else has had that, but it was just extraordinary dry skin. I’d never experienced anything like that. I was taking oil baths, and then it just went away. I’m sure that was a side effect, too. But other than the nausea and getting that under control, I think I did okay.

»MORE: Managing Chemo Nausea

How did you deal with the hair loss?

It started looking dry and ugly, and then it was just hairs on your clothes and on the couch. I said, “Okay, let’s just get rid of this.” Since I had gone through it before, it wasn’t so traumatic. It was in the spring and summer, and I had a lot of really nice hats.

The one thing that bothered me more than the first time was my little granddaughters, because it’s hard to hide what is really going on with Grandma. At one point, I was taking care of them, and they had some little princess wigs. 

I said, “I want to try one of your wigs.” I took my hat off, and they hadn’t seen me bald before. The little one was a little alarmed. I said, “I look pretty good in your wig, don’t I?” They started laughing and we had a good time, so we got over that.

As far as my friends and my family, I was embarrassed in front of them. The thing about losing your hair that bothers me is that it seems like it takes so long to grow back! When I was ready for it to grow back, I just wanted it to grow back. But it’s not overnight. It takes a while.

»MORE: Hair Loss and Regrowth

How do you talk to young children about cancer?

I think my daughter-in-law handled it best. If they asked a question, we would answer. They would stay all night with us once in a while. It was just kind of common to say, “Grandma’s got to lie down.”  

Kids are not focused. They’re focused on themselves: when they can go play outside, if the sun’s out, what’s for dinner and can they have a treat?

We didn’t go into any details. They knew that their mother worked at a cancer center and that I was going to that same cancer center. They were 4 and 6 when I got sick, and they didn’t ask a lot of questions. We didn’t go into any details unless they did.

»MORE: How to Talk to Kids About Cancer


VIDEO: CAR T-Cell Therapy and Radiation Therapy

Next Steps

In December, a PET scan and biopsy showed an active tumor in your abdomen. How did you react and process this?

My oncologist was doing periodic PET scans. In December, I started again feeling abdominal pain. At first I thought it was just stomach cramps. I knew better. I just didn’t want to deal with it. 

Then when the PET scan showed that it was positive there and that we needed to try another course of treatment, I guess my biggest reaction was disappointment. I was just really disappointed. I wasn’t losing hope, but on the other hand, the reality of things kind of hit me.

What did your hematologist-oncologist say was the next step?

They thought the next step would be stem cell transplant, and they gave me some chemotherapy. They do that before stem cell. There are protocols with getting a stem cell transplant, and you need to be actually cancer free before you do get the transplant. 

I didn’t reach that goal, so they offered me the CAR T, which they were actually more enthused about. It’s just that the medical community and insurance want you to go through stem cell transplant first. Since I didn’t qualify, my doctors were excited that they could offer me the CAR T.

CAR T-Cell Therapy

How did your doctor explain CAR T to you?

He described it pretty thoroughly, and I did have some background in hematology. I was a laboratory medical technician for my career, so I understood T-cells, antibodies, the basics of blood cells. 

It made sense. It seemed astronomical that they had come up with this solution, all the studies and the work that went behind it. The whole idea of it was pretty amazing.

Actually, the same cancer center has a Fred Hutchinson Research Center, and they were heavily involved in CAR T. Jeff Bezos actually donated the money for the CAR T suite and their own doctors. I sort of left the care of my regular oncologist, and I was now in the care of the CAR T research scientist oncologist.

»MORE: Immunotherapy FAQ

Can you explain the CAR T process?

First of all, they go over side effects very thoroughly, which is a little bit scary because there can be some life-threatening side effects. The fact that we lived more than an hour from the hospital required us to live closer, and it was quite an expense to rent an apartment in Seattle for a month.

You had to be 15 minutes from the hospital — which would have been University of Washington — because as soon as you get a fever, they want you there right away. It’s life-threatening. 

I think it was like 100.3 or something. I can’t remember exactly. It was what you would consider a low temperature, but if you got that temperature, you’re in the emergency room. That happened, and I spent a week in the hospital there. They closely monitored me. Of course, that’s after I got the T-cells.

Removing cells

I need to back up a little bit to the process of removing your T-cells. They can do it with veins in your arm if you’re young, healthy and have huge veins in your arm. Unfortunately, I didn’t. 

They put a tube in your neck, which again, was a procedure but not a really painful procedure. It was short. It didn’t take long. All I can say about it is it was awkward, because you’ve got this tube sticking out of your neck. You have to have it there like overnight. I just slept on the couch with pillows propping my head up and managed to get some sleep. 

It’s sort of like a kidney dialysis, where they transfer your blood through a machine. They actually take your blood cells out, they go through a machine, it removes your T cells, and then it puts your blood back in. It’s an all-day process. 

The nurse that does it is highly trained. It’s a complicated process. I didn’t have any problem with it. It’s just that it took a long time, and you were hooked up to this machine so you couldn’t leave. I think they did bring me a bedside commode at one point, but it’s not like you can get up and go to the bathroom or anything.

Returning cells

Then it takes quite a few weeks. They sent my cells to New Jersey, where they were processed. I think it took quite a few weeks. I can’t remember exactly, like at least 4 weeks. Then they came back. It’s just a little tiny bag, and they put the cells back in. 

It’s just an easy process there. They had removed the tube in my neck. They put it in the afternoon before removing my cells, so that’s why I had to come home with it. Then the next day, they just took it out. For putting the cells in, it was like an IV drip, a little tiny bag.

It was at least 6 hours to remove the cells. Receiving the cells back was maybe half an hour. It was no time at all.

Maybe it won’t change anything. Maybe it will. So I went ahead and did it.

Aftercare

After you receive your T-cells, you need to be within 15 minutes of the center for a month. You see the CAR T team Monday through Friday during this time, and they do vital tests and COVID tests once a week.

They did a mental cognitive test and asked how I was feeling. They were short visits, but they wanted to see you in person.

For the mental cognitive test, you wrote the same thing down every day. You’d think I would remember that, but I can’t. You just wrote the same thing every day. You could see it written, and you had to write underneath the same phrase.

Hospitalization for fever

We were at our apartment, and my husband was just fanatic about checking my temperature. He said, “We’re going.” Arrangements had been made for when I got the temperature, and it all went really smoothly. They put me up in the oncology ward at the hospital.

While I was in the hospital, I had a couple of days of chills. I think my temperature probably got higher there, because I remember the chills really bad, and they subsided. They did keep me there for 7 or 8 days.

They monitor you very closely. It’s a little boring to be in the hospital for 7 or 8 days when I didn’t really feel that bad once the chills and the fever went away. It was comforting to know that they were watching me that closely.

»MORE: Leaving the Hospital: Emotions & Support

Radiation Therapy

Your PET scans were returning positive, while your biopsies were returning negative. What was going on?

The doctors were wondering what was going on. They couldn’t give me an answer. They couldn’t give themselves an answer. Apparently, the CAR T oncologist said, “Sometimes you can get a false positive with CAR T.” 

It’s a fairly new cancer procedure. They don’t know everything about it, and they admit that. They were a little hesitant.  

I think I had 2 biopsies. I was feeling fine, and I couldn’t even feel what was still positive. At one point, my doctor said, “Let’s just see in 6 months.” I was thinking that’s great, but then he called just before Christmas and said he just couldn’t get it out of his mind. 

He was a little concerned and thought, “What if I’m not doing the right thing?” He and his colleagues had spent a lot of time thinking about it, and they decided that I should go through radiation therapy for the month of December, which kind of ruined my Christmas plans. 

I was disappointed again, and he gave me a choice. “This is just how we feel about it. It’s up to you.” I kind of don’t like when they do that because those are hard decisions. 

My husband and I talked about it. We thought if they are wondering and worried, then it kind of makes me feel the same way. Like he said, maybe it won’t change anything. Maybe it will. So I went ahead and did it.

He didn’t have any answers because they were confused about the biopsy report compared to the PET scan report. They were just trying to cover all the bases.

What went into your decision to get radiation therapy?

I just wanted to get on with my life. On the other hand, I thought, “I don’t want to just shorten my life. How do I know?” We just don’t know. I tend to be more cautious. We did discuss it. I think my husband and I made the decision that night.

He was getting worn out driving me to Seattle every day, because we needed to get in the commuter lane and it was winter weather. Oh my gosh, we just didn’t want to do that. We just knew the possible consequences versus maybe no consequences. It was hard to do.

How was your experience with radiation?

The worst part was actually getting there. Like I said, it was winter, and traffic in Seattle is not pleasant. We’re north of Seattle. As far as the radiation, you just get on a table, they line you up, and it doesn’t take long at all. Because it was in my abdomen, I had side effects like diarrhea. Again, I dealt with that with the anti-diarrheal medicines, but that was a little unpredictable and unpleasant. I also got fatigue from that.

»MORE: Radiation Therapy

How did you deal with the anxiety of waiting for results?

I think it was harder on my husband, to tell you the truth. You just kind of picture yourself where things are fine. And then all of a sudden, you’re picturing yourself like, “This is it.” It’s like a teeter totter. You’re down, you’re up, you’re down, you’re up. It’s like you just can’t seem to be in the middle. 

I’m a realist. Tell me everything. I can handle it. If it’s going to be this way, it’ll be that way. But I do set myself up for the worst. My husband says I need to be more of an optimist. I always have a plan B, but C-D-F plan — how many plans can you have?

»MORE: Coping With Scanxiety


VIDEO: Clinical Trials

Needing Further Treatment

Learning the results of the lymph node biopsy

I wasn’t too surprised. I just thought, “I’ve been through all these things.” Then I got the impression this is at a simmer. Let’s just try to keep everything at a simmer. It’s the whole attitude of my oncologist and my daughter-in-law, who’s an oncology nurse. It’s the realization that possibly that’s all they can do. That’s okay. We’ll just see.

They did a PET scan after the biopsy. Actually, I got that PET scan result from my radiation oncologist because I had a Zoom meeting set up with her for a month after my radiation. We had both gotten the report at the same time. It was on my MyChart. 

She had just seen it. She told me that actually there were multiple spots all through my abdomen of positive lymph. That’s when my oncologist gave me some options for further treatment, and one of them was a study drug.

What options did your oncologist offer?

One of the options was a repeat CAR T. He says it’s not like the original CAR T. Then he offered me the study drug that he did. I think there was one other. I can’t even remember it. 

With the CAR T, I just didn’t feel like my husband and I had the strength to go through all that again and rent another apartment. We decided together that we’ll try the study drug, and my oncologist said he was guardedly optimistic. That’s better than, “I’m sorry. I can’t offer you anything.”

The study required another biopsy, which I just had yesterday on the lymph gland. I imagine it’s going to be the same as the one I had in February, and then I think that they’ll do a PET scan in June.

Clinical Trial

Clinical trial process

There are 7 chemotherapies once a month. I’m going to have my second one on Monday. There’s lots of blood drawing for the study, like timed blood draws. There are a lot of things that aren’t really the therapeutic side of the treatment, but more the study side, which I’m willing to do.

I’m having a hard time with that because I just feel like I’m a shell of myself.

The blood draws are tests that the study needs to do after the chemotherapies. That sort of thing. I do get blood tests where they monitor my red cells that my oncologist sees — my chemistry test, my kidney, liver function, all that. My doctor keeps tabs on that. The rest of the blood tests go to the study. 

There’s once-a-month chemotherapy, and then you take a pill every day. You have to fast 2 hours before the pill and 1 hour after.

»MORE: Clinical Trials in Cancer

How do CAR T and the clinical trial compare? Do you wish you would have done CAR T again?

I don’t really wish I had done CAR T again. This gives me more freedom: the pill every day, the once-a-month chemotherapy. It’ll be 6 months or 7 months, so I need freedom in my life right now. I just need to not be so tied down to cancer. 

I feel like hopefully it could work, but if it doesn’t, at least I got some freedom to live a life. It’s really hard when you’re just tied to a cancer center constantly. It takes a toll on my husband with all the driving and the waiting. 

We’re in our 70s. I’d have a completely different attitude if I was 20 to 30s. I feel like whatever happens, happens. It’s been kind of a long haul, but I’m just hoping that maybe my experience is like a handbook to somebody else. 

None of the procedures they do are really painful. I got a blood infection from the port, and when they took that out, that was painful, but it was because it was so infected in that area. But all the other procedures I had, I really didn’t have a problem. I had to have one therapy for weeks and IVs and all that. But you just get through that kind of side effect. 

Continuing to Live Life

Dealing with extreme fatigue

I’m having a hard time with that because I just feel like I’m a shell of myself. I have a greenhouse. I walk out there. I’ve planted seeds. I have a chair out there I sit in. It’s just not who I am. That’s the problem. It’s not who I am. I’m just trying to cope with the fatigue.

You just want to make the best out of everything, no matter what it is. At some point, we all have to face an inevitable. But just that the life you led is the best one you could have done, even if you were sick at the end.

My red blood cell count’s low from the chemotherapy, they said. I’m hoping they can help some way to get me a little more energy. I push myself. I really do. Otherwise, I think if you didn’t push yourself, you would just be in bed all day. I can’t do that. I feel better when I push myself, and then I take a nap. 

It’s springtime here. That helps. Everything’s blooming and growing, so the garden helps my spirit. Even though I can’t take a walk like I used to, even if I walk around the yard, it’s like I’ve done something. I’ve looked at something that made me feel good. 

We did hire a housekeeper because you can’t keep your own house up, and my husband’s doing everything. We decided that there are things we need to do to make our lives easier.

»MORE: Cancer Treatment Side Effects

How are you doing now?

You just want to make the best out of everything, no matter what it is. At some point, we all have to face an inevitable. But just that the life you led is the best one you could have done, even if you were sick at the end. I have a lot of inspiration, my grandkids and my husband, but there are sad times. There are really sad times.

My husband tells me to quit crying, and there’s always humor in life. That’s what gets you through — laughing or looking at something that seems silly. I think I’m going to get a cat now. We haven’t had a cat for a while, and I decided I wanted one again.

»MORE: Inspirational Quotes From Cancer Patients


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Categories
Caregivers Spouse

Kelsey’s Acute Lymphoblastic Leukemia (ALL) Caregiver Story

Kelsey’s Acute Lymphoblastic Leukemia Caregiver Story

Kelsey was 30 weeks pregnant when her husband, Seth, was diagnosed with acute lymphoblastic leukemia. She stepped into the role of caregiver during what should be an exciting time in her life.

As a dentist, Seth had some medical expertise but the diagnosis was still a major shock. Kelsey had to navigate the medical system and cancer care while planning for their baby’s arrival.

Kelsey shares processing the diagnosis, becoming new parents, and navigating the recovery process.

On a day where you feel like you can’t do it anymore, you just say, ‘One more day.’ 

Kelsey K.

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


Leukemia Symptoms

Introduction to Kelsey

I’m Kelsey Klasko. Hobbies and things we enjoy probably changed a lot, especially since having our daughter. 

[I] absolutely love being outside, even if it’s just eating lunch outside, playing in the grass, hiking, camping, fishing. Anything outdoors makes me happy. 

I don’t think I’ve ever, especially in the last few years, had a really strict exercise regimen but I like to keep moving. Having a toddler definitely helps me do that. 

Seth’s 1st symptoms

[My husband] started feeling really crummy. He went camping with one of his friends, and I was going to go, but I was pregnant. My doctor said off-roading, and high elevations are not good for you right now. 

He went with one of his buddies, and he took one of our dogs. Just knowing my husband and how similar we are and loving to be outside, I just know when he’s gone for the weekend that I’m not going to hear from him until it is sundown the night he’s supposed to be home because you won’t have phone service. 

He called me the day after he left and said, “I’m on my way home. I feel terrible, just my whole upper body, even breathing.” 

He was driving home on a dirt road, and it was bumpy. [He] was just feeling everything. That was really weird.

We’re young and healthy, so I thought, “All right, buddy, how much whiskey did you guys have last night?” High mountain elevation sickness — people get that, too, and you were sleeping on the ground, and we’re 30 now. We chalked it up to all that kind of stuff.

He felt crummy the rest of the weekend, took it easy, and then he was having several more painful episodes that were concerning. More fatigue. 

First hospital visits

We started going to the doctor. His blood work came back normal. They did a chest X-ray. They chalked initially his symptoms up to a strained muscle under his ribs and told him to take it easy.

In the night or late early morning, he was just having these [episodes] where he was just waking up in pain. His upper body was just painful. It got to a point where he just kept going back to the doctor. 

They prescribed him muscle relaxers and anti-inflammatories, and that wasn’t helping. We are not really medication people. I mean, we take Advil or Tylenol if we need it. He’s a doctor himself, and he just really wanted to make sure they knew, like, “I don’t want opioids; [I’m] not trying to get pain medication.” 

But the concern became greater when the muscle relaxers weren’t working because we’re sitting here like, “Okay, it’s not muscular. What’s going on?” Again, just a few more weeks go by. 

He had gotten the Johnson & Johnson vaccine. I wondered, “If I go into labor and he hasn’t been vaccinated, will they not let him be there with me?”

He got the Johnson & Johnson vaccine and had a pretty moderate reaction. I wanted to take him to the ER, and he’s like, “No, they’re just going to tell me it’s the side effects from the vaccine.” And so he didn’t go. 

Irregular blood work

Then the baby shower came and went. [For] the baby shower, normally he would go get out of the house and go fishing for a day or something, not be surrounded by a bunch of women in a house having girl time. 

But he stayed home. He didn’t leave. He wasn’t feeling well. You could just kind of see his pallor; his color was not right. His dad had actually ended up flying out to come and visit with us because he could even tell his son [was] not behaving normally. 

We were reading the ER doctor’s notes, and he has a differential diagnosis. One of them was lymphoma. 

He went to the doctor on a Thursday. He was supposed to go to work with me because we work together, and he ended up going into the doctor that day. He just was feeling terrible. I had to tell him, “You’re staying home. You can’t function like this.” 

He went to the doctor. They actually repeated blood work. This was like three weeks apart. Then I got home from work that day, and he was on the phone with her. 

She said, “Your blood work’s totally irregular, and I want you to get a CT scan. I ordered one for you tomorrow, but I really think you should just go to the emergency room because you can get one faster.”

ER visit

So we did that. They repeated the blood work because they wanted to make sure it wasn’t a lab error or anything. They did do a CT scan. I’m not going to say all ERs are this way, but I think a lot of emergency rooms, it’s not really their job necessarily to diagnose in these situations. 

It’s more of, “Let’s get you to the right people.” So the only thing that the ER doctor could tell us is that “your spleen’s enlarged, your platelets are extremely low, and I’ve had a hematologist review your blood work. He really wants to see you as soon as possible.” 

This was a Thursday night. My husband and I have medical backgrounds — We’re in dentistry, but we’re educated to a degree. I wondered, “What do all these symptoms mean?” 

We were reading the ER doctor’s notes, and he has a differential diagnosis. One of them was lymphoma. I wondered which one was the worst one, and what do we do. Again, no one had diagnosed him with anything. 

Trying to set up a hematologist visit

Friday morning, I called the hematologist that the ER doctor gave us, and it was a bit frustrating because it was a central scheduling phone number. It’s not the doctor’s office. When I finally got ahold of them, I said, “He needs to see him as soon as possible.”

It was the first week of September and they told me they didn’t have any openings until the end of the month.

I told them, “No, [not] the end of the month. He needs to be seen today. If not, Monday. It needs to happen.” I asked, “Is there someone else I can talk to?

I got connected to the office, but again, it was a woman who works at the front desk, not a nurse, not anyone. I explained, “This is an emergency. The end of the month isn’t going to work.” 

The earliest they could do, the best they could do, was that following Friday, so a week. I said, “Okay, I guess, schedule it.” 

Symptom escalation

Over the weekend, his condition plummeted. He started having bruises everywhere. They weren’t going away. Petechiae all over his body. Again, the color of his skin. He just was sweating, and his gums started bleeding. He’s a dentist. His gums don’t bleed. 

I called on Monday, and I kept making phone calls. I honestly don’t even know how I ended up getting on the phone with the triage nurse, and she was over at MD Anderson in Greeley, which is probably 40 minutes from our home. She just said, “Bring him in. Just bring him in.” 

I didn’t realize at that time his primary care doctor who had done the blood work, who told him to go to the emergency room, had actually sent some of the blood work off to a pathologist already. There were things going on in the background that we just didn’t know yet. 

Diagnosis and Treatment

The diagnosis

We got to MD Anderson in Greeley, and they sent us to the infusion center, where people do outpatient chemotherapy. We’re just kind of sitting there. Again, we don’t know what’s happening, but we thought, “Is it a mistake that we’re here? Part of me feels like you don’t get here unless you have cancer, but we don’t know anything.” 

One of the nurses actually brings us back to a hematologist oncologist’s office, and says, “Hey, based on some of the blood work we have here and talking with your doctors and then the ER, we’re pretty positive that you do not have lymphoma.” 

And I was relieved. I was like, “Yes!” 

But then she said, “I’m almost positive you have leukemia.” I started crying right away. I think Seth, my husband, was just sort of sitting there. You’re hearing what they’re saying, but you’re not really hearing what they’re saying. 

I’m just thinking, “I’m almost 30 weeks pregnant, and how does this…?” I just started spinning. I asked the doctor, “Is he going to be able to be with me when our daughter is born? What’s going on?” 

She said, “Yes. Absolutely.” Very reassuring at the time. She said, “We still have to get more information.” He had to get scheduled for a PET scan. He had a PET scan, I think, the next day or two days later. More and more blood work. I mean, so much blood work going on. 

»MORE: 3 Things To Remember If Your Spouse/Partner Is Diagnosed With Cancer

Changing cancer care hospitals

The doctor that was there was like a traveling doctor. She let us know, “If it is the type of leukemia we think he has, it can’t be treated here. We’re going to be in contact with some doctors in Denver to see if we can get him admitted.” 

Seth had to get more and more bloodwork and bone marrow biopsy. They didn’t really want to send him home, but they didn’t know how soon they could get him admitted down in Denver.

They wanted to get as much information as they could and at least start doing something for him in the interim. Thursday when he was at the ER, his platelets were 20,000, which is very low. By Monday when things were significantly worse, they were like 8,000. 

The center is not very equipped to deliver blood products, especially the amount that he needed. Just for one bag of platelets, he was sitting around for like seven or eight hours. 

His body at that time was so sick. He’s not retaining them. So they’re just kind of dying and flushing away. He got his first bone marrow biopsy on a Thursday, and then that same day, Colorado Blood Cancer Institute in Denver contacted us and said, “We have room for him; we’ll take him.” 

They basically sent us home that night to pack because they said, “You’re not coming home right away. You’re going to be there for at least a few weeks.” We headed down to Denver, and so September 17th was his first day of treatment for acute lymphoblastic leukemia.

How far along were you when he was diagnosed?

His actual date of admission in Denver was my 30-week checkup and I canceled it. The family kind of fought me on that. I was healthy. I felt good. I’d gone to all my other doctors’ visits.

The first trimester of my pregnancy was weird. I ended up having bleeding, which can happen, but I think mine was a little bit higher risk. I actually wasn’t allowed to do any real physical activity or anything in my first trimester. There was a heavy chance that I would miscarry, but I didn’t. 

This is a moment — a long moment, but it’s not forever. It’s not our life. It’s just for now.

That part was scary, but by the time I was at 30 weeks, everything was going really well. To me, it was a no-brainer. I thought, “I’m not going to miss my husband getting admitted into the hospital. I’ll go to a checkup a few days later. We’ll figure it out.” 

 
How did you process your husband’s diagnosis while also being pregnant?

I think I still am. Initially, I thought there was going to be a lot to worry about when she was born. For now, I don’t want to say it’s easy because it wasn’t, but I was like, “She’s with me. She’s here.”

They always say, “The baby can hear you, the parents. They feel what you’re feeling.” 

I thought, “She’s going to be around us and hear us both as much as possible. So we’re all going to stay together, and I’m going to be as calm, cool, and collected as I can while she’s still cooking. I don’t want that to be anything additional for us to all worry and stress about.” 

I thought back to how I was raised and observed my parents. Then I put myself into my husband’s parents’ shoes and then, of course, my husband’s shoes. 

I just always thought, “What example do I want to be for my kid, and how do I want to remember this time and how I carried myself?” Whether it was for her or for him or for the rest of our family.

I think I always use that as a little bit of motivation. I think just always be hopeful and optimistic. I’m going to hope the best and think the best until someone tells me I can’t. That’s always been my mindset. 

Being strong for each other

To a fault in some ways, I think my husband and I both tried to be strong for each other. I think he wanted to display strength so that I wasn’t worried about him and stay healthy through my pregnancy. 

I wanted to be as strong as I could for him because I wanted him to know I have total confidence that we’re going to get through it, and we’re going to be fine. This is a moment — a long moment, but it’s not forever. It’s not our life. It’s just for now.

How did you get through those challenging times?

We have such great support. His parents, my parents, and even his aunts. It’s almost like the caregivers need caregivers. It never ends. We all needed each other. I think that was so helpful for me.

I wouldn’t leave the hospital. I stayed there with him. It was almost a solidarity thing.

Family [would] tell me, “Look, go for a walk, get out, and we’ll be here.” It was almost reassuring knowing if I wasn’t with him, someone else was with him. And the same with our daughter. 

Feeling like you’re always doing the wrong thing

I knew the challenge would be much greater once she was actually born because she wasn’t allowed to be at the hospital with him. There would be times when I had to be with her, and it was very difficult because I felt like I was always doing the wrong thing. 

I felt like if I was with her, I needed to be with him, and if I was with him, I should be with her. No one ever made me feel that way but me.

Seth and I talk about it all the time. There are people that do this alone and people that don’t have caregivers or caregivers that don’t have caregivers. 

We’re so grateful that we’ve faced so many worst-case scenarios in our early lives together, but of every worst-case scenario, we’ve had the best possible outcome you could get from that. Remembering that is important.

What advice do you have for caregivers feeling guilt?

You’re not doing yourself or anyone you’re with any justice by not being present with them at that moment. I just had to tell myself that if you’re going to be with Charlotte, give her all the attention and love that she deserves right now.

You’re not helping Seth by worrying constantly and not being present with her, and you’re not helping her by not giving her all of the love and attention. 

In a way, I kind of felt like, you know what? Your daddy can’t be here with you right now, so I’m giving you all the love from both of us. And kind of the same with him. When I was with him, I’m giving him all the love from her. 

I kept a blanket of hers with him in the hospital, so I would kind of have his scent or whatever on it. Then every few days I’d swap some blankets out and then take that blanket back to her. 

Just knowing, like I said, when I wasn’t with Charlotte, she was getting the best care from her grandparents and aunts, and the same with Seth. There’s just no shortage of love.

The nurses were phenomenal because there were moments when he was alone, give or take, for a few hours or whatnot. They were a great source of relief, knowing that he was in good hands when there were moments when there was maybe a lapse of family being there with him. 

Becoming Parents

Was he there when you delivered your daughter?

Yeah. With just the fortunate schedule he had. We told his medical team from day one. Of course, they knew our situation. It was so obvious because I was super pregnant. He was home for almost every major event holiday. 

The way it worked out, his initial inpatient stay was six weeks. It was supposed to be shorter, but his first round of chemotherapy didn’t work. He was supposed to be on the pediatric treatment plan, which is strictly chemo. But it’s long. It’s a few years. 

Initially, we thought he was getting out after about three weeks, and then we got his bone marrow results back, and it hadn’t worked. That’s when they told us, “Hey, we’ve got to start over with this chemo plan, and we’re going to do the adult plan.” 

On top of that, that’s when we found out he was going to need a transplant. So that was a really hard day. I had everything packed. I was ready to go home. I was like, “I’m getting this guy out of here. Jailbreak.” 

The doctor made his rounds and told us that we weren’t leaving that day. So it was another three weeks.

Getting induced

He was discharged on October 29th, and my due date was November 10th. By the time he had gotten out, I was 39 weeks. At that point, women are allowed to do elective inductions. 

Prior to him being sick, I told him, “I don’t really have a pregnancy plan or a birthing plan. I just really don’t ever want to get induced. I just want to kind of let it all happen.” But he was actually scheduled to go back in for more chemo on November 8th, so we knew we had a window. 

Again, it’s a control thing, right? It’s almost like so much has happened outside of our control, and if I can control him being able to be there for our daughter to be born, I’m not going to miss that. 

We made the decision I would get induced, and he was there. We were, again, fortunate. Because of COVID, they had strict rules about who could be your support person in the hospital for your delivery. 

I talked to them, and I said, “My husband just spent six weeks getting chemo in a different hospital. I don’t know how long this labor is going to take, and I don’t know if he’s going to be able to be here the whole time.”

They worked with us. They allowed my mom to stay and be with me the whole time, and he was allowed to come and go and be there for the most important parts. Again, it all worked out. 

Recovering after giving birth

She was born on November 5th, and we got to leave the hospital on the 6th. He was home for a couple of days before [going] back to Denver for chemo. We live about 45 minutes away. 

From a recovery standpoint, I thought, “I want to recover as fast as I can because I want to get back down to Denver and visit with him.”

My husband, of course, was always very supportive. The family was always there. For most of the first year, we were never alone. Someone was always with us, which was amazing.

How did you manage life as both a new mom and a caregiver?

You just have to. I don’t know. I try to write things down, make notes, [and] have a schedule as best as I can. I made it a priority to try and breastfeed our daughter, which got a little complicated with being with my husband, being home, and back and forth. 

I was almost scared in a sense. One of the things I read online about breastfeeding [is] it helps prevent childhood cancers like leukemia. For me, I was like, “She’s getting all the breastmilk. All of it!” 

I think it’s a control thing. I can control that she gets this and that she’s getting fed the best. No matter what, I’m doing what I can to support her in that way. No matter what.

I know I carried a degree of stress and anxiety with me that I probably tried to push down again purely from the fact that I’m like, “They say that the baby feels what the mother feels.” I just was trying to control so much of that. 

I don’t think I was fooling anyone but myself. I probably should have had more moments to cry or get it all out. And I had my times, but I thought, “I can do that later. You can cry later.” Then later comes, and then I had about 50 other things to do. 

Caregiving as a full-time job

We used to work together full-time as a couple, and both of us, our lives completely stopped. I stopped working as well and didn’t go back to work until the end of August this last year. 

For me, it felt like my new job. It is the most important job I’m ever going to have, whether it’s being a caregiver for my husband or daughter.

That just became my blinders-on focus that no matter what, I’m going to just give everything I have to them. I always told myself, “You can do this another day. You can do this for one more day.”

Then the next day comes, and you say, “I can do this for one more day.” There were times when it was really difficult.

I do think finding the good, even in the smallest moments. It can be hard. I get really greedy with my husband’s recovery and where I want it to be versus where it is.  

I had to stop doing that and start celebrating those little wins and be excited for them, even when they may seem small. Celebrate them because you need to, because it gives you hope for the future.

The Recovery Process

Processing your emotions

It’s kind of strange when you go through something traumatic. You compartmentalize parts of your emotions and your life. During the treatment process, when he was in the hospital, and even the first 100 days after his transplant, you have such a schedule.

I was so busy that my primary focus was, “What am I doing now? What do I have to do in an hour?” 

Now we’re in a place probably since [the] end of summer, early fall, where my husband became a lot more independent and helpful with our daughter, and we were kind of alone as our family unit. 

I think you have this delayed processing. We both started therapy. He and I both see a therapist, and I’m not saying you go once and it’s magic, poof. But she’s been helpful. Honestly, I wish we could do more therapy.

Letting yourself feel your emotions 

For me and for Seth, I think our processing is probably a little different, what I need versus what he needs. I’m at a point where talking with other caregivers is helpful because you can try and explain to people what’s happening or what you’ve been through.

It’s no one’s fault, but if you haven’t lived it, it’s just a very difficult thing for someone to understand — and then add all of the extra circumstances we had on top of it. It’s complicated. 

I do think kind of starting to let myself feel however I should feel. I think there’s a lot of me feeling guilty for wanting to cry or be sad because it’s like things are — I don’t want to say things are perfect now because they’re not. But there is so much to be grateful for and happy for.

But there is a mourning of experiences you thought you may have had. Usually, you picture the birth of your child or the first few months or a year in a certain way, just like you imagine your wedding, right? You kind of have this picture, and it’s changed. It’s not that way. 

You can be sad for that, but then you have those moments where you’re like, “Yeah, but I’m also grateful because, without everything we’ve been through, he’d be dead.” It’s a continuous process, and I don’t think you’re ever done processing it or feeling it. 

Recognizing triggers from the leukemia experience

I think a lot of patients and caregivers will go through phases of times where they’re maybe triggered by something. We went to Phoenix back in November to go see family. That was kind of the first thing we’ve done since before COVID and him getting sick. 

I was packing his bag for him, and it was the same bag that I packed for him to go to the hospital every time. I cry every time I pack a bag for him. It’s weird because it’s not something I expected to happen.

I told him that after the fact, and he said, “Well, maybe I just need to get a new bag then.” And I said, “Yes, please, let’s get a new bag!” 

We’re still in recovery. That may be lost on people outside of this community. People assume you’re in remission or you had your transplant or, oh, my gosh, Kelsey is back to work. Wow, your life, boom, everything’s better. 

This is just another chapter that’s probably a lot harder than either of us expected. Our therapist has reassured us it’s actually very normal what we’re experiencing right now, which is validating. 

I don’t think I expected this phase to be so hard on my mental health. But I’m happy that both of us are working on it. Some days and weeks are better than others, but we’re a work in progress. 

What advice do you have for taking care of your mental health during recovery?

Well, I’ll say something our therapist had told us or me. She said it’s not uncommon at this point in recovery where the caregiver and the patient actually start to progress at different rates. 

She said, even in your relationship, it can be challenging. I was so used to doing absolutely everything for him because he needed it, and now he doesn’t necessarily, and I still want to do everything. 

[It’s] almost like stretching that muscle of knowing when is it right for me to maybe push a little to encourage him to have some more independence versus when do I need to pick up that extra slack in any facet of life? 

I think that advice would be no matter what you’re feeling, it’s normal. We’re not all going to feel the same way, and our responses are not going to be the same. Accepting that is okay. 

Being open about your feelings

I do wonder sometimes if I’d cried more in front of my husband, maybe if it would have made him feel comfortable to do the same. Because I do wonder sometimes if both of us are trying so hard to be strong for each other that we almost don’t allow each other to express ourselves in a way that both of us are craving in the moment. 

I do think having a little bit more openness about your own feelings is important as well. We’re so concerned about how everyone else is feeling and doing that sometimes you forget I’m still really important, too.

In order for me to be the best I can be for them, I need to recharge or reset or just do something. It doesn’t have to be anything big, but just finding something small you can do for yourself that makes you feel better. 

Again, it’s probably different for each person. It is important. So I would just say feel however you feel. It’s okay, and you’re important, too, even if you sometimes don’t feel like it. 

Look forward. I think constantly being positive and hopeful. It’s so easy to dread the worst. “Cancer” is a trigger word. It’s a terrible word. 

Waiting for results

There are times that are really difficult, especially when we’re waiting on results. His one-year transplant anniversary is two months away, and so he’ll have another biopsy in April. 

I don’t even think about it or worry about it until he gets it, and then you’re just waiting, waiting, waiting, waiting. You don’t get results usually for one to two weeks. 

I’ve always noticed this kind of anxiety we both have but almost don’t talk about when we’re on edge a little more when you’re waiting for results. Like I said, sometimes just address the elephant in the room.

»MORE: Patients describe dealing with scanxiety and waiting for results

Reflections

Remembering others’ intentions

It can be hard when you talk to friends and family or other people. Again, outside of this, I think that so many people want to find a way to relate to you by saying, “Oh, I totally get that.” 

It’s hard because, of course, their experience is totally not relatable at all, but they’re doing the best they can. I think that sometimes you can be a little annoyed, because you’re like, “You don’t get it.” 

But remembering intention, people are intentionally trying to connect with you with something they just do not comprehend. Take it with a grain of salt and just remember people’s intentions are generally good when they’re trying to relate to you. So be patient with them.

What is the right thing for friends and family to say to someone with cancer?

Usually saying something is better than saying nothing. I think sometimes you may have friends or people — maybe they’re not your best friends, but people you’re close with in life or that you see on a regular basis. 

Some people just don’t know what to say because it’s a hard thing to approach. Say something. It could be as simple as, “I’m really sorry. That sucks.” Sometimes just say, “You know, that really does suck.” 

Instead of sometimes trying so hard to relate, just empathize. You don’t need to necessarily try and relate so hard, but just having that empathy is really helpful.

So much of what was good for Seth in the hospital was when friends visit or family visited and they talked about normal parts of life. Sometimes it’s almost refreshing to hear about other people’s problems because it takes me away from mine for a minute. 

Change in perception of real problems

There’s the duality of that. Seth and I are forever changed in the sense that our perspective of what true problems are versus menial things seem like are real issues, and then you find out they’re really not. 

Something we’re both working on, too, is recognizing when people talk to us about their problems, those used to be our problems before everything happened. Not necessarily having hostility against anyone for that because that’s what is normal for them. 

But it is hard sometimes when you listen to someone talking about their issues, and you just sit there like [nodding]. You take it one of two ways. You can be annoyed and angry and like, “Oh, they’re so insensitive.” Or you can just be like, “Wow, I miss when that’s all I cared about.”

Staying optimistic

The progress isn’t always linear, which can be frustrating. We expect from day zero and then counting back up after the transplant, that it will always improve. Thinking every day is better than the last, and it’s not, which again is difficult. 

But even if it’s not better every single day — you may have a week or a month where things are great, and then maybe they’re not, and you stay there for a month, and then they get better again. It does get better. It does. 

I think just staying hopeful, staying optimistic. On a day when you feel like you can’t do it anymore, you just say, “One more day.” And then every day, that’s what we say: “One more day.” 

But it does get better. Even if it may not feel like it or there are times that are really hard, you do get through them. Medicine’s improving, research is improving, and I’m just so grateful for that. And be a donor.


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Tiffany’s Non-Small Cell Lung Cancer Story

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    • Pain in right side
    • Breathlessness
    • Persistent cough
  • Tests for DX:
    • Blood work
    • Spirometry test
    • Chest X-rays
    • CT scan
    • Bronchoscopy
    • MRI
    • Lung biopsy
    • Liquid biopsy
  • Treatment:
    • Clinical trial #1
      • Tagrisso
        • TKI inhibitor
      • Cyramza (ramucirumab or RAM)
        • IV infusion every 3 weeks
    • Clinical trial #2
      • Phase 2

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


Pre-Diagnosis

Introduction to Tiffany

Tiffany: This is my husband, Nick. We met our freshman year of college and started dating into freshman year. We celebrate our 15-year wedding anniversary in May. We’ve been together for a little over 20 years. 

We have two 8-year-olds, boys. They’re twins. They’re amazing. I was a labor and delivery nurse for 15 years, and I used to teach Pilates. I love to work out. Fitness, and health, have always been super high on my list of priorities. So this is kind of a shocker, to be honest.

First lung cancer symptoms

Tiffany: I remember 2020, the start of the pandemic, I started having pain in my right rib, and I remember mentioning it to [Nick] several times. But as I said, I work out a lot, so I just thought I pulled a muscle or bruised a rib or something along those lines. 

Then in July of 2020, we went hiking in Colorado, and I couldn’t go 20 yards without my heart rate shooting up and just being so short of breath. And I remember telling [Nick], “This isn’t normal.” 

Then fast-forward another month, I started getting a cough that just lingered. Went to the doctor, drew blood, tested all that, started me on antibiotics, and did a steroid. Nothing helped. 

Along those lines, making sure it wasn’t COVID. I’m still working in the hospital, so going to work and having a cough with the pandemic going on was not ideal. Then September, I went back in, and I told my primary care doctor, who’s also a family friend. 

I said, “It’s just not getting better. These steroids aren’t working. The antibiotics aren’t working.” So we did a couple of tests in the office to check pulmonary function, and I failed that miserably. 

From there it was, “Let’s go see a pulmonologist. Let’s go ahead and get a CT scan, chest X-ray.” Over the course of maybe two weeks.

Nick: I think they said that she had the lung capacity of an 80-year-old. That raised some pretty significant concerns. That was, I think, the first real alarm bell for the primary care doctor, and that’s what sort of initiated the special session.

Did you ever have that feeling before?

Tiffany: I mean, Dr. Google. I kind of tried to self-diagnose myself with adult-onset asthma. After that pulmonary function test, it was obvious that that was not the case. From there, we were sent to a pulmonologist, where they thought it could be sarcoidosis. 

Nick: Some type of interstitial lung disease. Nobody ever speculated that lung cancer could even have been an option.

Tiffany: Never smoked. I didn’t have any factors that really made a red flag go up that it could be cancer. I got scheduled for a bronchoscopy in early October 2020. When I came out of the procedure, Nick could hear me in the waiting room. 

I was telling the nurses, “I can’t breathe.” The anesthesiologist walked by as I was saying that in order to check the X-ray, and my right lung had collapsed. I went back in, and got a chest tube. 

When I came out, I was on the unit, and from there it just became we saw every doctor known to man. Epidemiologist because we had just been to Colorado. They thought maybe I had a fungus in my lung. We saw everybody.

Tests to figure out diagnosis

Nick: I think for a couple of hours, they thought you had tuberculosis.

Tiffany: Yeah, so then I was treated like a COVID patient. I was in isolation. My procedure was October 7th, and then we found out it was cancer October 10th-11th. 

Nick: Four, five days of just tests and treatments and poking and prodding. The whole time, she had a chest tube in [while] trying to heal the collapsed lung. Eventually, that happened. 

The concerning thing was the pulmonologist who did the bronchoscopy, I think looking back at it, he knew what was really happening. He couldn’t diagnose her, but he saw all these other tests being run, and he saw just the misery that she was in [during] that hospital stay. 

We could tell he was frustrated. At one point, when they moved her to the isolation room when they thought she had tuberculosis, he came in and was furious that somebody would be putting her through that and started ripping out all the tubes and starting to get us out of there. That was, for me, the first time I realized it was more serious than that.

Lung Cancer Diagnosis

Did cancer ever cross your mind?

Tiffany: Early on, an oncologist did come into the room, so I think we were already a little bit aware. If we backtrack a little bit, one of the tests that I had prior to the bronchoscopy was a CT scan on my pelvis. 

Our primary care doctor had a conversation with us and said, “There are some things that look a little off. It could be nothing, but sometimes it can be. It does look like it could be a little bit cancerous.”

Mine was already kind of a little bit there, but I had just gone to my OB. All of my testing was normal, as it always has been, and so I told him that. I said, “Well, I was just there. Everything there checked out great.” 

He was like, “Well, that’s really positive. I love that. But we are seeing [bony masses].” Come to find out the cancer was stage 4, so it had already spread to my pelvis, my right femur, and my cervical spine. 

So that’s what he saw. We found that out later, but we kind of had a little bit of an inkling it could be a possibility.

Nick: The primary care doctor’s actually a good friend of ours. When he came to our house, [he had] only the radiologist report. It was concerning, but your mind doesn’t go to advanced-stage, metastatic cancer. Even when you hear the word “cancer,” you don’t immediately assume.

Tiffany: That was October 3rd, I think.

Nick: Primary care doctor raises some concerns. Makes it clear that she has to have a bronchoscopy because they’re going to need to get tissue samples to really figure out what’s happening. That was about a week before she went in for the bronchoscopy, when everything became clear.

Meeting with the oncologist

Tiffany: All the days ran together. It was probably the second or third day that one of them came in, and I was like, “Okay, well, I know what that means, obviously, but I’m not…” 

Everybody else is saying, “It could be this; it could be this,” so we were holding tight to all the possibilities that they were giving us and putting that one in the back. Like, “Surely not. That can’t be happening.”

Nick: Even when the oncologist did come in, he never was very direct about it because they were basing their diagnosis on the fluid that had come off of her lung. They didn’t have the tissue results back, which gives us a clearer picture of what type of cancer it is, maybe more the primary. 

At the time, they still didn’t see a primary tumor. They were basing it off of fluid, so he used words like, “We’re seeing cancerous cells in your endo fluid. It definitely is cancer, but we don’t know where or what type.” 

They didn’t talk about staging or any kind of severity. So we’re sitting there kind of knowing that it’s bad, but not really at that time even still knowing how bad things are or how severe things were. You didn’t find that out until at least a week later.

Waiting for answers

Tiffany: At least a week. I think I was discharged on October 11th. We knew at that point for sure it was cancer. I think on the 10th they tried to tell us in not so many words, but to discharge us, they had to give us a diagnosis. 

Because the tissue biopsy takes so long to get back — it’s like 10 to 14 days — our appointment with the oncologist here in town wasn’t until I think Thursday, the following week. 

We had almost a week at home to sit there and just marinate on everything. Not knowing where my primary tumor was, what exact type of cancer I had. We just knew I had cancer. We came home, and we had to tell our family. They had so many questions, and we had no answers, which was hard.

»MORE: Patients describe dealing with scanxiety and waiting for results

How did you deal with not having answers?

Tiffany: I think I was just kind of in denial. This is not happening. It was shock. A lot of shock.

Nick: The other thing is she was still in a fair amount of pain from the chest tube. At that time, I think, and looking back at all of the pictures and going back — we do that frequently and see memories from that time — we didn’t realize how sick she really was. 

A lot of the symptoms that she was feeling, experiencing, we knew what that was now, and so that was another hard thing. You’re sitting there knowing what this is now, and it just brought a whole new level of anxiety [and] fear. 

And not having a treatment plan or answers on what to start was concerning, too. There’s a lot of fear [and] anxiety.

Did you ask for answers?

Tiffany: Their response was, “We have to wait on the pathology to come back because we don’t know enough to be able to give you anything.”

Nick: The original oncologist who diagnosed her didn’t comment on the primary tumor, so they weren’t saying that it’s lung cancer, although that seemed like the obvious answer. 

We then went to MD Anderson for a second opinion, which was sort of in that week’s waiting period. We were admitted to MD Anderson, so we drove down to Houston, which is about a four-hour drive. They ran all the tests, all the scans. All the things that she had just gone through the week before in the hospital, they sort of redid in their environment 

They basically said, “This is clear, no question. Obviously a mass in your right little lobe. It’s lung cancer, advanced stage. You’ll need to start treatment.” All of the answers kind of smacked in the face in one day.

Tiffany: Remember, this is COVID, so I’m going in there by myself, FaceTiming him. I think it’s hard as anybody getting any news, but trying to separate my nurse brain from my patient brain and really absorb it all was really, really difficult for me. 

I’m so glad I had FaceTime and a second set of ears because I honestly think I heard half of what they were telling me, because I was trying to separate. It was a lot. It was a lot to hear, handle, and navigate on my own.

»MORE: How to be a self-advocate as a patient

Not catching lung cancer early

Nick: Yeah, I remember one of those calls. I was sitting in the parking lot outside the hospital at MD Anderson, and she was having this initial conversation with her oncologist whom she had never met before, who we know now really well. 

But she didn’t know him from some guy down the street, and he’s sitting here telling her that this is really bad. There are some options, but this is that very frank conversation. And I remember you asked, “But we caught this pretty early, right?” He just very bluntly said, “No, we didn’t.” That was the eye-opener.

Tiffany: Yeah, I think because my symptoms came so fast, from basically July. I don’t really count March, when my ribs started hurting. In reality, that probably is when it happened. But I’m just thinking July, August, September, three months, like I’m here. And he’s like, “No, no, no.”

Nick: The vast majority of lung cancers are diagnosed in the advanced stage because their symptoms don’t present until it’s moved pretty fast.

Lung Cancer Treatment

Starting treatment

Tiffany: Luckily, the oncologist in town was very, very open to getting a second opinion. When we met with her and she told us that I had lung cancer but they couldn’t locate the primary tumor, she was like, “Okay, I’m going to schedule you on Wednesday for a port placement, and we’ll start chemo on Thursday.” 

At this point, thankfully, we had already gotten an appointment at MD Anderson. I told her, “I’ll make those appointments, but I’m not going to be here.” I just flat-out told her, “We are going to go get a second opinion, and we were able to get into MD Anderson.” 

She was like, “That is wonderful. You absolutely should do that.” 

With that being said, I already had it in my head, like, “I’m starting chemo.” That’s what you do when you have cancer. At least in my mind, that’s how I was thinking. 

I had really long, beautiful hair that I chopped off into a bob because I thought it would be easier to lose my hair if it was shorter versus all this long hair falling out. I’m in the process of trying to grow it out again because I quickly learned that that was not the route that we were going to take. 

How genetic mutations affect treatment

Tiffany: When we went to Houston, my oncologist said, “We’re still waiting on those biopsy results. What I’m hoping for is that you have a genetic mutation.” 

We had never heard of anything like that, and so we were like, “What do you mean, genetic mutation?” 

He said, “Non-small cell lung cancers, there’s some sort of genetic mutation that we can target. We need targeted therapy to attack that mutation and avoid chemo, for the most part.” 

I’m like, “Really? Tell me more.” 

We went there, did all the scans, came home for two days, drove back. At that point, the biopsy results were back, and we found out that I have an EGFR mutation. 

Thankfully, with that there is a medication that can target it that I was a candidate for, along with a clinical trial that I was a candidate for. They gave us the option to choose between two.

»MORE: Read our interview with a genetic counselor

Starting the clinical trial

Tiffany: I got started on Tagrisso, which targets the EGFR mutation, along with Cyramza, which is an IV medication that I received every three weeks. It’s actually for stomach cancer, but they were seeing what the two combined do together.

Nick: The clinical trial is testing whether or not the combination of those two medications would prolong the effectiveness, and increase the effectiveness. One of the issues that they have, the TKI, the targeted medications, is that they develop antibody resistance over time. 

They were hoping that this Cyramza would prolong that or put that off, the resistance, for a certain amount of time. I don’t think they got their results, not from Tiffany’s trial, because her case lasted basically the average amount of time. 

I did want to say one thing about that genetic biomarker testing is that if she had started chemo when the local oncologist wanted to … they probably wouldn’t have gotten answers on the genetic mutation. 

It would have precluded her from most of the clinical trials that she was a candidate for. So getting the genetic biomarker testing done first, even though it caused some additional waiting, which was tough, was so important. 

In hindsight, even now as she’s being considered for other clinical trials, it’s very important because the more lines of treatment that you’ve been exposed to, the more you start to get excluded from more.

What did you think of clinical trials?

Tiffany: When we heard “clinical trial,” I was very open to it. I think being a nurse, I’ve always been pretty open to things like that. I feel like that’s how we learn. We don’t get information if people don’t do it. 

It kind of brought me back to nursing school, where I remember our professors would go in and say, “I have a nursing student. Are you okay with her coming in and learning today?” 

Some people would say no. I understand that. But when people were open to it, it warmed my heart, because how else am I supposed to learn if I’m not exposed? How else are people supposed to learn if there aren’t people who are willing to do clinical trials?

My grandfather had kidney cancer and agreed to be a part of a clinical trial, and his first round of chemo actually killed him. But I knew it can go one of two ways. You can either have that result, or there’s the potential that this clinical trial could prolong your life. I’m just open to that kind of thing. My heart felt full to go that way.

Nick: You were also saying that the prognosis for lung cancer is pretty bad, and chemo doesn’t have a good track record, especially for her subtype of cancer. I think that makes it easier to be open to trying something experimental.

Genetic testing

Tiffany: With genetic testing, just so people know, you’re going to get pushback, especially from insurance companies. But it is such a huge asset to have and could potentially change the steps going forward. I feel very blessed that my oncologist was a huge advocate for that. He helped us a lot with our insurance.

Nick: The genetic biomarker testing, which is crazy to me, is still considered to be experimental. Maybe it’s changed since this was 2020 when she had that done the first time, but it was denied by insurance three times. 

We had to fight with it for a while, and they eventually ended up writing it off. I don’t know who did. I think it was the testing company, actually. It just shocks me that with this being the new age of cancer treatment and it’s so effective and it’s the first line of treatment, the medication that she’s on. 

Tagrisso is then the first line of treatment for several years now, and the only way you find out if you’re a candidate for that is this genetic biomarker test. For that to be considered experimental is just a shocker.

Every day, it seems like they’re coming up with new medications that target different mutations. It’s an amazing wave of cancer research that’s happening.

Nick J.
Genetic testing process

Nick: I think it is something people need to know about because I think for a lot of oncologists, the local oncologists, where we were diagnosed, treated it as sort of a backup thing that we can do. 

Since we have tissue samples from the bronchoscopy, we might as well do it, but we’re going to start chemo first. In hindsight, again, that would have been a horrible decision. 

We had to have that answer upfront, and we didn’t even know to ask for it. The oncologist at MD Anderson, that’s just part of their standard protocol. There are a couple of different ways that you can do it. 

There’s actually a liquid biopsy, which is just a blood test now that looks for circulating tumor DNA in the blood. It’s a little bit like finding a needle in a haystack, so it’s harder for them to get a clearer picture of any kind of genetic mutations that are driving cancer from the liquid biopsy. 

But it’s still an option that’s less invasive and easier to get done. They literally just drew, what, ten vials of blood?

Tiffany: I just had one done not too long ago again.

Nick: It takes a couple of weeks to get back.

Tiffany: It’s about two weeks.

Nick: The more accurate way to do it is through a tissue biopsy if they can get tissue from the tumor itself or the surrounding areas where there are metastases. Then they get a very clear and accurate picture of what genetic mutations or drivers are causing cancer. 

Every day, it seems like they’re coming up with new medications that target different mutations. It’s an amazing wave of cancer research that’s happening.

Importance of education for patients and their caregivers

Tiffany: I think education is so huge. When you get a diagnosis like this, most people go to Google. I wish there was some page that we could put up that just said, “Do these five things right off the bat.” 

Like, “Make sure you ask for genetic testing. Here’s what to do next. Make sure you get a second opinion.” I wish there was a checklist for people, like when I get my cancer diagnosis, what do I do now? 

We were all over the place, and everybody was Googling things. We were hearing things from left, right, center, and it was really overwhelming. I wish there was a list of, “Make sure you do this, this, this, this, and this.” 

We didn’t know what to ask for. Luckily, we just had people who were already doing those things. I don’t know if everybody has that same thing happen for them.

Dealing with insurance

Nick: First of all, we feel very fortunate that we have insurance. A lot of people don’t have that luxury. But it has been that adds stress and dealing with insurance companies and getting things approved. 

Every day, we get a stack of letters from the insurance company. Half of them are saying you’re denied for this or that’s been excluded. 

MD Anderson does a great job of kind of working and advocating on your behalf with the insurance companies. So a lot of this, the headache, is handled by them. 

I always felt like my role is a supporter and caregiver to kind of shield Tiffany from the stress of the insurance and the bills. If you can take that small thing off her plate, one less thing to think about. 

I didn’t want to deny the fact that those bills are sitting over there and that there are letters and things to deal with. But the insurance companies, a lot of people think they’re these evil villains that are out to get you. It is a difficult process, but I do think that they’ll work with you. 

That’s been my experience. It might take a lot of phone calls and a lot of time and a lot of arguing, but they’re going to figure it out, and you can kind of put it off to the side and deal with it when you can. Nobody’s going to come to repossess your house or take your cars or anything like that. 

For us, we tried to put that off to the side and deal with what was most important, which was being with each other and caring for each other and making sure that we have that covered. When we get a minute to take a deep breath, then you can go and open up those letters.

Med Break and 2nd Clinical Trial

What happened after the clinical trial?

Tiffany: I started a clinical trial taking the Tagrisso, which is what Nick was saying, the primary way to treat EGFR mutation with the Cyramza. The Cyramza was an IV every three weeks. Every three weeks we load it up and head to Houston, and I would get my infusion and check-up with the oncologist, get my labs drawn. 

It was kind of every third visit, I would have a CT scan, chest X-ray, MRI, brain MRI. Lung cancer tends to go to your bones and your brain, and it had already gone to my bones. We’re just trying to make sure it doesn’t go to my brain. 

The Cyramza has its own set of side effects, too. I had a lot of bloody noses. The Tagrisso has side effects. Both of them caused headaches. The Tagrisso makes your body break out in a rash, especially as it’s getting built up in your system. That affected me very greatly. 

I had just sores. They were everywhere — in my mouth, in between my fingers and my toes, my knees, my elbows. But they’re able to kind of help you with all those things with creams and meds. 

»MORE: Cancer patients share their treatment side effects

Collapsed lung

Tiffany: Along this journey, the Cyramza also delays healing. About a year into a treatment, I was just sitting with my mom talking, and my left lung collapsed. I felt just immense pressure like what I would think a heart attack feels like. 

[I] tried to walk it off, tried to take some muscle relaxers, anything I could to make the pain go away. Nothing was happening. We’re still in the midst of COVID. It’s not over yet, but it was bad at this point. This is November 2021. 

I waited several hours, four or five hours, before I finally was like, “Okay, Nick, I think I need to go to the hospital.” They put me in this back room that was secluded from the waiting room, and we had to wait a couple of hours before we were seen. 

They did that chest X-ray, and my left lung was just [shrunk]. Sure enough, it was gone. I got a stat test tube and earned a 10-day stay.

Med break

Tiffany: With that came taking what was a med break from the Cyramza, so we went back to Houston after I got discharged. They held it for two cycles. With the clinical trial, there’s all these things you have to meet. 

I was able to take this break, but then I had to get back on it in order to stay on the trial. The caveat with that was if I have another collapsed lung, we’re done. 

At the same time as that was happening, Tagrisso could cause liver toxicity, and my liver enzymes were just shooting up through the roof. So we had to take a break.

Nick: Which was really concerning because this is a year into treatment, and everything was actually working phenomenally well. They were shocked, actually, how well everything was controlled. 

When Tiffany was diagnosed, we were looking back at pictures, [and] started to remember how sick she really was. We didn’t realize it because it just gradually got to that point. 

At the time that this second pneumothorax happened, she was really healthy and strong and doing well. The fear of having to end the clinical trial that was working so well was really like the top of both of our minds.

Tiffany: I had gone from needing supplemental oxygen very regularly — that was in November of 2020 — to by March of 2021, I don’t think I picked it up again until my lung collapsed.

Nick: November of 2021, you were on a treadmill. 

Tiffany: Running a mile a day. I felt like me again. Just every three weeks, we did our thing. That was a huge, like, “Hey, this is really still happening.” Because we had gotten so accustomed to everything working and falling into place.

Chest cramping issues

Tiffany: We took a break from both, huge med break. During that time, the cancer did grow a little bit, so we knew that these treatments were effective. They didn’t grow a lot. Very, very minuscule. 

But still, our oncologist was like, “You got to be on this. This is not an option for you.” We restarted in February of 2022, I think, was the end of the med break. Started back on track. Everything was great. 

We once again coasted until November. Just not my month. Leading up to Thanksgiving, I had some increased chest cramping, and it just was getting worse and worse and worse and more often. 

We were due for a trip anyway, and I started talking to my nurse. I said, “Just having a lot of cramping. I don’t know what’s going on.” Because of the holidays — it was right around Thanksgiving — they were doing things a little bit backwards. 

Typically I would go in. I would get my labs drawn. I’d get a CT or chest X-ray. Then I’d see my oncologist, and then I’d get the Cyramza. This time it was labs, oncologist, Cyramza, CT, and I was really uncomfortable with that given the symptoms I was having. 

Heading to the ER for scans

Tiffany: She was like, “Why don’t you go to the ER, get checked out? They’ll do that test for you. We’ll have it, and then we can proceed tomorrow.”

I was like, “Okay, sounds good.” So we go in and drove into town, ate because I know how it goes when you go to the doctor. We ate dinner and went to the emergency room. They did a stat chest X-ray. Everything looked great. They did a CT scan. 

This ER doctor who is not an oncologist comes booming in our room, and he’s like, “Well, the reason you feel so bad is that your cancer is worse.” We looked at each other, like, this guy’s happy and jolly, and you just told me really, really bad news. What is wrong with you?

We ended up getting admitted. That started a whole slew of more tests.

Nick: What that meant was not just that things were getting worse. It meant that the drugs that she was taking were losing their effectiveness.

We’ve been living in fear of [this] since the day she started taking it, because they’ll tell you, “This will stop working eventually. It’s great when it works, but when it stops, then you have to figure out why.” That was how we found out that.

Current clinical trial

Tiffany: Now we’re starting a new clinical trial. It doesn’t have a name. I don’t even know. The med doesn’t have a name. It’s a true early-stage medicine. I’m taking that in conjunction with the Tagrisso still. I started that second week of December, I believe, and we actually go back on Monday, and we’ll find out if it’s working.

Nick: It’s phase 2. They had a phase 1 to figure out dosing. The type of treatment is called Aurora kinase inhibitor. That thought there, I think, is that the Tagrisso had stopped working and there’s resistance for some reason, and they think maybe that this pathway is the way that. 

They didn’t find any new genetic mutations, so the thought is that the existing genetic mutation has just built up some type of survival mechanism that they think that they know why that survival mechanism is happening. 

I guess it’ll be pretty obvious this week if it’s working or not working. If it’s working, that’s great; she gets to continue on. But if it’s not working, then it’s back to the drawing board.

»MORE: Learn more about the process of clinical trials from one program director

Reflections

Being a team through lung cancer treatment

Tiffany: Nick’s always been my rock since the beginning. But I think a lot of what we have is our faith is just really strong, and it’s grown even stronger throughout this whole process. 

We have an awesome team behind us. Our family is top-notch, incredible. Our friends are amazing, and our church community has just been such a huge blessing. The elders of our church pray over us pretty regularly. I would say our faith is what has helped us the most.

Nick: I think that part of our faith that helps for me is that at some point you just have to stop trying to control things and realize that you’re not in control of anything in life, from the most minuscule things that happen to you in the day to things like this. 

You can give up the control a little bit, and we find ourselves trying to control every aspect of it. That’s when we start to get frustrated and mad and sad. I think that we help each other try to let go of that a little bit and realize that there’s a higher power at play. 

The plan may not be what we want it to be, but there’s a plan out there that’s going to help somebody, and it’s going to do something because we know that there’s a higher power in control.

Words of advice for patients

Tiffany: Lean into your people. I mean, your family, friends, community, whomever you trust, and just accept help. I think that’s been the hardest part for me. I’m pretty independent, and I like to do things for myself. 

Allowing people to help you is huge. You can’t do it all. Like you said earlier, the insurance thing, he’s like, “Don’t even think about it. Don’t worry about it. I got this.” That’s just one little tiny aspect of it all. 

Over time, we’ve had so many conversations, and one of the things that is so important to me is that we don’t leave this earth without making an impression. This guy thought about that hardcore. He came up with a really great thing, so we started a nonprofit, which gives us a lot of meaning behind all of this, too.

Nick: Finding purpose was a big thing 

Tiffany: A huge thing.

Make every day count

Nick: I also know one of the things Tiffany has done a lot really well, I think better than I would be able to, is finding a way to still smile and have fun and laugh and do stuff with the kids. 

Even when she’s hurting or not feeling well, she’s still outside with the kids. She’s still doing things. It’s harder. Especially with COVID, there’s a lot of fear around doing things and being out there. But if you stop living, then you’re passed up. 

Tiffany: At least for me, it’s been just trying to maintain normalcy and living life. We have a very big zest for life and just going out and doing it. Don’t hold back. I guess that’s the thing, too. 

You always think, “Oh, when I retire, I’ll go do this.” Well, that isn’t going to happen for everybody. We don’t know what’s going to happen to us by the end of the day. We may as well just live for each and every moment.

Nick: Yeah, it’s really cliche — live while you can or make every day count, all that stuff. When you’re kind of forced to do that, it’s a little bit easier for us to say, like, just got to make every day count. 

I feel like that’s one of the things we try to help each other do. Make sure that we’re constantly putting things on the calendar and having things to look forward to and planning trips. Half the trips that we’ve planned, we couldn’t do them or fell through, but we just keep putting them out there and keep doing stuff to try to make the most.

Ten for Ten Million

Nick: Like Tiffany said, she was adamant about leaving an impression and making a mark on this world. We did start a nonprofit that’s dedicated to raising funding for cancer research, and the sole beneficiary of our nonprofit is MD Anderson. 

The nonprofit is called Ten for Ten Million, and that’s $10 a month for the 10 million people every year who die from cancer. What we do that’s a little bit different is we are trying to collect smaller donations in a recurring format. So that’s why we call it $10 a month for the 10 million people every year. 

We have a website where you can go and sign up and make that recurring commitment. What that does is it gives the researchers at MD Anderson a steady, consistent, recurring flow of funds that are constantly growing. 

That gives them the ability to more effectively plan their research and plan their trials and their treatment innovations and everything that they do really well. That just gives them the ability to do that better. That’s what our goal is. 

At the same time, it raises awareness and helps people realize that you can’t wait until you have cancer to try to make an impact. You have to start now, and everybody should be committed to this.

Tiffany: It’s something that’s really easy. It’s just simple, easy, and we have a recurring email that tells you when it’s about to happen. Then we’re working on getting out a quarterly newsletter to just keep people in the know with where their money is going.

We’re working really closely with some people there. We’re going to be able to tour the lab soon and be able to share that with everybody who has committed. So we’re excited about that.


Inspired by Tiffany's story?

Share your story, too!

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Ivy E., Non-Small Cell, EGFR+, Stage 4 (Metastatic)



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Amy G.

Amy G., Non-Small Cell Squamous, MET, Stage 4



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Dan W. profile

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Shyreece P.

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Categories
Medical Experts Medical Update Article

The Latest in Breast Cancer Patient Research

The Latest in Breast Cancer Patient Research

A conversation about the newest breakthrough, treatments and advocacy

The San Antonio Breast Cancer Symposium (SABCS) provides the latest information in research, prevention, diagnosis, and treatment of breast cancer.

The San Antonio Breast Cancer Symposium (SABCS) provides the latest information in research, prevention, diagnosis, and treatment of breast cancer patient research.

Lesley Glenn is a cancer patient advocate who was diagnosed with metastatic breast cancer over a decade ago.

Dr. Mya Roberson is a health services researcher, a health equity champion, and an assistant professor in the Department of Health Policy at Vanderbilt University School of Medicine

Lesley and Dr. Roberson sat down with The Patient Story to discuss patient research and news coming out of SABCS 2022.

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


Introduction to Lesley

Lesley G.: Hi. My name is Lesley Glenn, and I have been living with metastatic breast cancer for a decade now. I want to tell you a quick story before we get into this really amazing interview with Dr. Mya Roberson from Vanderbilt. 

I was diagnosed first with stage 2B. When I came out of the oncologist’s office at that time, I was loaded down with brochures, magazines, beanies, blankets, scented candles, and hand lotion. I had all of these resources handed to me for what I thought was going to be maybe an 8-month journey of going through treatment. 

Soon after that, I went through scans, and they found hot spots in my body, which ended up being a metastatic disease to my bones. I was really stage 4 de novo, which means from the beginning. When I got that diagnosis, I walked out with a piece of paper that basically said, “You are stage 4, and you are 99.99% incurable,” and I had no resources. I had nothing. I had a piece of paper that said that I was incurable. 

Shortly after that, I started IV systemic chemo, and it ended up being really toxic for me. I ended up with full-blown sepsis in the hospital for a month. After I was getting better from the sepsis, the oncologist came back to me, and she said, “Okay, are you ready to go back on chemo?”

My thought was, “Are you kidding me? This almost killed me, and now you want me to go back on this treatment that was actually worse than the cancer itself?” It took me to a place of really trying to pursue what I thought was missing in this whole dynamic of patient-doctor care. 

As I started my advocacy journey, getting to know the scientific part of it, and talking to researchers, [the missing part] was where is the patient voice in all of this? Why doesn’t our voice matter? Why is everyone running through — I’ve heard the term used before — all of these shiny new toys that may be giving cancer patients, especially metastatic breast cancer patients, one month more without quality of life [being] taken into consideration? 

Sure, we want to live longer. The statistic is that those of us with MBC only have 3.3 years. That is the statistic. I know that we’re not statistics, but at the same time, there are a lot of people that are still dying from metastatic breast cancer. We know that research is going into helping us to live longer, but we feel that our voice is so very important.

When I started my organization, Project Life, which deals with the survivorship and the thrivership of those of us that are living with MBC, it was really important to me that we be studied. 

Why are there gatekeepers in these survivorship programs that are saying, “I’m sorry, honey, but this is not for you. You have to be done with treatment, and then you can come and join our programs”? My [thought[ was, “I’m never going to be done with treatment, and I deserve all of these extras just as much as those that are done with treatment.” 

Introduction to Dr. Mya Roberson

Dr. Mya Roberson
Dr. Mya Roberson

Lesley G.: Fast-forward to 2020, when I was introduced to Dr. Mya Roberson from Vanderbilt University through a good friend of mine. She wanted to have the conversation about cancer care delivery with metastatic breast cancer patients and how it was very important. What do metastatic breast cancer patients care about? What do they need, what do they want, and what is the best type of support that we can offer them? 

I’d like to introduce you to Dr. Mya Roberson. Dr. Roberson, can you share a little bit about your passion [and] how you came up with this project? Her passion for the cancer community is amazing.

Dr. Roberson: My name is Mya Roberson. I am an assistant professor of health policy at Vanderbilt University School of Medicine. I am interested in making sure that as we get better at treating cancer, our advances are making it to everyone and that everyone has a high quality of life through their cancer survivorship journey. 

I became particularly passionate about metastatic breast cancer survivorship [from] hearing from patient advocates, starting as simply as on Twitter. [I was] hearing the patient voices highlighting the needs and the gaps that face this particular community around cancer survivorship. 

[I was hearing] how most of the research that exists, when it does exist, around metastatic breast cancer focuses on end-of-life care, rather than understanding that there are individuals living with metastatic breast cancer and thinking about what the specific survivorship needs [are] for those individuals. 

That was really the impetus for this partnership to work with an organization like Project Life, founded by my wonderful colleague and collaborator Lesley Glenn. [The impetus is] to really understand the patient-centered issues related to metastatic survivorship [and] to broaden the conversation, taking a step back well before we even get to conversations around end-of-life care. What does it look like to live well with metastatic cancer? 

It’s really been my honor as a researcher to partner and amplify this work. An analogy that I really like to use for how I see myself as a researcher in this space is that the patients and the patient advocates have the microphone, and through my work, I grab the megaphone to really amplify the needs and what is most important to patients and patient advocates.

Lesley G.: It has been such an amazing experience to work with you, Dr. Roberson, this past year. We have just built this great collaboration. What has been most meaningful to my community at Project Life is that their voices are heard. It’s the first time that someone has ever taken the time to really listen. What is working for you, what is not working for you, and what do you need? 

For so many years, the metastatic voice was not heard. We were put on the back shelf, and [told], “Well, you’re going to die anyways, so we don’t really need to be funding these types of things.” For someone like me that’s been living for 10 years with metastatic breast cancer, my quality of life is really very important to me, like the side effects. 

I shared the story before about being really sick from chemo, then the oncologist trying to push me back to go back on chemo, and then me saying, “Wait a minute, but that made me feel horrible. I don’t want to feel horrible, so can we find something else for me to do so that I do not feel so bad? I still want to be able to function as a human being.”

What you have done for the community and making their voices known has been so pivotal for us. I know it’s just a precursor of getting our voices heard to get more research out there to really listen about our survivorship and what’s important to us: quality of life. 

For those clinical researchers that are looking for new treatments to really think about, “Okay, well, they don’t want to be nauseated 24/7. Yes, they want to live longer, but they don’t want to be bedbound the whole time that they are living longer.” 

Having this type of research gives the patient a voice. We’re able to share that with the clinician part or the scientific part of putting together new treatments. This is what the community is really wanting and needing. I feel very strongly that they’re going to start listening.

What is the impact of this type of breast cancer patient research?

Lesley G.: Dr. Roberson, what is the impact of this type of research for us that are living with metastatic breast cancer? What does it mean to the general public? People will be watching this and go, “I don’t know anything about breast cancer. No one has been affected.” Why is this type of research really important?

Dr. Roberson: I foundationally believe as a researcher and as a person that nobody knows cancer better than people living with cancer. That is, to me, the foundational importance of this work. It is, at a very fundamental level, elevating the voices of people living with metastatic breast cancer. 

As part of this study, one of the questions that I asked all of the participants was, “How would you reimagine metastatic breast cancer care delivery in your own words?” I believe that the solutions are within the folks who live with these conditions day in and day out. It doesn’t necessarily have to be a top-down researcher or clinician’s approach. It really needs to be a patient-centered approach. 

What I learned from asking that fundamental, foundational question was so insightful. I got answers like, “I wish I was connected to palliative care earlier. I wish that my oncology team could communicate with non-oncology specialists. I wish I had better mental health support to deal with the depression that I’m experiencing, being faced with a stage 4 cancer diagnosis.”

Those are all things that we should already foundationally be doing for people living with metastatic cancers broadly. What really struck me is the most quote-unquote out-of-the-box answer that I got to that question was, “I wish I could be poked less. I wish that I got prodded less when I went to my clinical care visits.” 

Literally using the word “reimagine,” these are the things that folks come up with. [These are] the things that we already know that we should be doing and just need to be doing better. That’s my hope for this work and the work that it could potentially inspire. 

We should be asking all folks living with cancer, metastatic and otherwise, even beyond just metastatic breast cancer, “How would you reimagine care delivery?” Your voices absolutely matter, and we as researchers should be listening and elevating those sorts of voices to ensure that we are doing things in a very patient-centered way.

What were you thinking and feeling during those conversations?

Dr. Roberson: On one hand, I felt very discouraged hearing some of these narratives of folks feeling not listened to. That, and thinking about my research colleagues writ large, that we are not centering patients in what we do. That’s what we should be doing as cancer researchers. 

On one hand, it was discouraging in that way, but on the other hand, it was very inspiring because folks are so explicit about what they wanted to see done and what they wanted to see be done better. To close that out, it gives me a lot of hope that there are things that we can do. We have this great foundation of ideas of what patients would like to see be done better about the healthcare system. 

It’s really that full range of emotions, honestly. [It’s] that idea of, ‘Oh my goodness, these things should be things that we’re doing. They should be simple.’ That’s where the discouragement comes in. But also, wow, how fortunate we are as researchers to have such a robust group of patient advocates broadly participating in our scientific conferences, participating in research, [and] giving us such great ideas to make our research even better.

What does success look like to you?

Dr. Roberson: To me, success looks like when patients or patient advocates come up to me, come up to Lesley, or come up to anyone else involved in this work and say, “I see myself in this research.” Whether or not they’re a direct participant or not, that they see themselves reflected in the kind of work that we are doing. This isn’t some kind of abstract idea. This is really, literally that patient-centered work. 

That is a different metric of success than our traditional academic norms. As a researcher, I want to do work that matters to the folks that are most affected by these issues. That’s my metric of success. I don’t ever want to get to a point where someone asks me, “What is the application? What does this mean for patients?” 

I want folks to be able to see [that] I see myself in this work. Quality of life is something that deeply matters to individuals living with metastatic cancers. My value of success is for folks to be able to see themselves centered in research.

I would even take it broader than that. I am a health policy researcher, and so my metric of success is being able to have those sorts of data, have those sorts of publications, [and] have those sorts of presentations that we can take to the Hill [and] to decision-makers, both Big P policy that we talk about in health policy related to legislation, things like that, but also Little P organizational policy. 

That is another metric of success, that this work is able to be taken outside of conferences like the San Antonio Breast Cancer Symposium. [A metric of success is] it can be used to advocate for greater resources for individuals living with metastatic cancers, greater insurance coverage, [and] to have more robust and holistic support within cancer centers and the physical place of care for metastatic survivorship. 

That is my metric of success: to see this impact policy both at the large federal, state, legislative, executive level, but also in the organizational, institutional policy and how we think about metastatic survivorship.

What is your connection to cancer research?

Dr. Roberson: My connection to cancer research is both personal and academic. I have a long family history of cancer in my family. My sister, my aunt, [and] my grandmother were all cancer survivors. It was just something that I had grown up around in a way. 

For me, I gravitated towards breast cancer kind of in the academic space [by] sitting in a classroom very early in my educational career. I saw a figure that many of us know very well that shows the mortality differences between Black and white women with breast cancer. 

[It showed] how we’ve gotten better at treating breast cancer over time, but Black women and other women of color have not found those same advances. Many members of my family have gone on to have very rich, robust cancer survivorship experiences. I want that to be realized for all. 

[It was] that blending of personal experience, seeing the impact that cancer has had on my own family, with that encounter in an academic space with this very real inequity that we see in cancer, and really marrying those to move the needle and help make more equitable cancer care for all.

Conclusion

Lesley G.: Not everybody is going to be a patient advocate. Not everybody is going to have their voice heard. While I’m very passionate about patient advocacy, I didn’t start advocacy when I got cancer. I was always an advocate. I was an advocate before I even got my metastatic breast cancer community for the marginalized communities where I lived. 

I always wanted to be the voice for those that were voiceless. I want to continue to do that for as long as I can. Another thing that is very important to me is I think about my kids. I think about people who live with metastatic breast cancer. I think about their children. 

What I would like to see happen is that the work that is poured into right now, the things that we are bringing a voice to, the things that Dr. Roberson is researching, that if something happens… We think that cancer could never touch our families, and then we’re surprised when they are. 

But wouldn’t it be great if all of these things came together, we could have equitable care, we could have the right kind of care for survivorship and thrivership, we wouldn’t have to fight for it, that our voices have already been heard, and we’ve laid that foundation so that we can be sure that those loved ones of ours do not have to go through what we went through to fight for our rights to live well?


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MPN myelofibrosis Patient Stories

Jeremy’s Myeloproliferative Neoplasm (MPN) Story

Jeremy’s Myeloproliferative Neoplasm (MPN) Story

Jeremy Smith has been living with a myeloproliferative neoplasm (MPN) for 33 years. Jeremy has both polycythemia vera (PV) and chronic lymphocytic leukemia (CLL).

Jeremy hosts MPN Forum Live, a podcast focused on sharing stories and advice from other MPN patients. He also discusses the importance of an anti-inflammatory diet, exercise, and good mental health, as well as having hope for the future of treating MPNs.

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


It’s a wake-up call for you to adjust your life. You should take advantage of that because you can get too focused on all the things going on inside your body. 

Jeremy Smith


Jeremy S.

Diagnosis:

Myeloproliferative Neoplasm (MPN), Polycythemia vera (PV) and Chronic Lymphocytic Leukemia (CLL).

 Introduction to Jeremy Smith

Andrew Schorr, The Patient Story: Hello and welcome to Cancer Friends. Andrew Schorr, here in San Diego and living with myelofibrosis and chronic lymphocytic leukemia (CLL). Joining us on this program is someone else who’s living with myelofibrosis and CLL, and that’s Jeremy Smith, who’s in West Linn, Oregon, right near Portland. Jeremy, thanks for being with us.

Jeremy: It’s a pleasure. Thanks for inviting me on. It’s been quite a journey for me over the years. I’ve always known who you are but didn’t get a chance to really talk to you until recently, so it’s been a welcome pleasure.

Andrew, TPS: Thank you for sharing some time with us. As you said, it’s been a long journey. Jeremy, you’ve been living with an MPN, starting with PV (polycythemia vera), for 33 years. You were part of one of the original, I would say, internet patient communication pioneers, where patients started talking to patients. 

As you’ve told me, these other founders of this early listserv — actually, even before we had more sophisticated tools on the Internet — they passed away. Thank God you have not. 

Why is sharing your voice important?

Andrew, TPS: You’ve really been dedicated to sharing your voice. Why is that so important?

Jeremy: I think that one of the things that I learned about my diagnosis is it’s very difficult for anyone who doesn’t have cancer to understand how you truly feel. As soon as you talk to another MPN patient, there’s a bond that happens and an understanding that you don’t get from your friends or your family, as hard as they try. 

I think it’s important for all of us to keep talking and learning and sharing what we know between each other, because I think it builds strength and knowledge. As rare a disease as an MPN is, it’s a very tight community, and I think that’s related to the social media connections and the ability to converse with each other. 

As you start to talk to people, they do feel lonely at times. It brings people together. It’s a real learning experience for everybody, no matter how knowledgeable or what level you’re at. There’s always a big difference between the person who just got diagnosed and someone who’s been on a 10-year-plus journey.

MPN Forum Live

Andrew, TPS: That’s what you’ve been helping facilitate for others. You’ve been part of the MPNforum, which has more than 10,000 followers. You started about a year ago, after thinking about it for a long time, MPN Forum Live as a podcast. What does it give you?

Jeremy: I love telling stories, so I feel like it’s a digital book that I’m writing and helping guide people to express themselves more openly about where they’re going. For me, it feels good, because everybody’s nervous. 

I would say, because of the average age of MPM patients … when you [tell] them, “We use Zoom,” they’re like, “What’s that?” Some only have 25 megabyte internet broadband. They’re not as technology-savvy as some other groups. 

I’ve enjoyed the conversation and getting to know other patients more in depth than I would otherwise. If I can help them in any way understand things [or] find different doctors, then it’s rewarding to me. I feel like we have an obligation as educated patients to pass on things that we’ve learned to other patients to help them find the answers to their questions.

Importance of diet and exercise

Andrew, TPS: Let’s talk a little bit about your personal journey. Your treatment now is with an interferon. You have your highs and lows, but you’re doing okay. You’re a big believer in diet and exercise. 

I think all of us want to know what we can do to strengthen ourselves for a higher quality of life. Talk about what you do and what you talk to others about related to diet and exercise and that being part of your role as a patient.

Jeremy: When I was first diagnosed, I had never heard of the disease. I was scared. As I started doing research, I found at the time — this was 1989 — there wasn’t a lot of access to information specifically on exercise and diet for MPN patients at all on the web. 

There weren’t any studies. There was no fatigue study that was done later with Dr. Mesa. What I started doing was going to other cancer forums and finding out what these cancer patients were doing with really bad cancers that was different than what we were doing as MPN patients. The constant theme that came through from everything I read was diet and exercise. 

At the time when I had polycythemia, I said, “I got this thick blood. What can I do to help my body recover and fight this disease?” I came up with a whole business plan that I wrote [of] these things I was going to do. For diet, the first thing I started doing was consuming large quantities of garlic because it has properties to thin the blood. 

I knew that I was getting fatigued and that exercise can thwart some of that and definitely depression. Everyone goes through a phase where there is some depression — some worse, some very mild. Then you also get fatigue.

I felt that I really needed to change my program, lose weight, [and] get in shape. Then I brought exercise in, where I’d go out on 30-, 40-, 50-mile bike rides. I want to say, first of all, that I didn’t just do this all on my own. I sat down with my doctors, because you should never start any changes to your diet or exercise without consulting with your doctor so that they know what’s going on. 

One of the things I didn’t know until I spoke to my doctor is that he asked me to always let him know when we did CBCs if I had exercised before or a day before. In many cases, exercise increases your white cell counts. 

It’s important to know that because my white cells might bump up, and that’s either a sign of an infection or something else. There were a couple of times where my white cells went way up, and it was because I had been on a 100-mile bike ride the day before. 

I combined all of those things, and all of a sudden, the fatigue was gone. I was just feeling better. I will say, one of the things that I’m most proud about is that I’ve never missed a day of work in 34 years because of my MPN. 

»MORE: Patients talk about working during cancer treatment

I’ve flown probably — I know I got the 1-million mile certificate, but I’m around 1.7 million miles on planes. Although, once COVID hit, my doctor said, “You’re not flying anymore.” 

I paid for a lot of my own CDC testing so that I could see if I switch to this type of diet or I moderate this, what are the results that I’m getting? I was able to track some of that stuff and share it with my doctor. Now, it’s still unscientific. I’d go to him, and he’d say, “There’s no data to support that.” 

I don’t believe you should create a diet for yourself that makes you miserable. 

The way they look at data is very different than the way I do or you do. For them, they’re more suspicious of what they don’t know. I did learn along the way that the younger doctors seem to be more behind the exercise, although I have to give Dr. Silver credit. He was a runner himself, so he was always behind that. 

Andrew, TPS: And he’s in his 90s, right?

Jeremy: Yeah. A few of the other doctors were kind of, “Well, if you can do it and it helps, that’s awesome. Now, let’s move on.”

What do you eat now?

Andrew, TPS: Jeremy, let me ask you. I’m sure our viewers are hanging on this and saying, “Okay, so what does Jeremy eat now?”

Jeremy: I’ve had one rule, so I’m going to say this now. One day a week, I can eat anything I want, and that includes McDonald’s. I don’t believe you should create a diet for yourself that makes you miserable. If you love food, you shouldn’t start hating it. I’m more on the Mediterranean diet than anything else. 

Another lesson I learned along the way is that it may not be your disease that kills you. It may be something else because of the stress on the body and how the diseases morph. I’ve had cardiovascular issues and things like that. 

The head of cardiology [at the Mayo Clinic] recommended the Mediterranean diet, and that’s pretty much where I am today. It’s a diet anybody can be on and get great benefits out of it. It’s not one of those diets where you have to just eat beans. It has a very good balance, and it gives you flexibility. 

I still eat a Kit-Kat bar. There’s certain things I’m not willing to eliminate. The diet to me that I would go on if I was an MPN patient — and, again, always check with your doctor — is more the Mediterranean diet or some variation of that.

Andrew, TPS: You and I both know Dr. Angela Fleischman, who’s a researcher and a clinician at UC Irvine, up the road for me. She is a big believer in the Mediterranean diet. It’s all connected in her mind — and some of the others say this, too — that what we have is an inflammatory condition.

Jeremy: Right.

Andrew, TPS: This diet can lower inflammation. Again, check with your doctor, but someone who is a very highly regarded MPN specialist, Dr. Fleischman, is doing a lot of research on this. It’s not just conjecture. There’s some thought about it, too.

Jeremy: There was a seminar back in May up at the Hutch (Fred Hutchinson Cancer Center) with a bunch of doctors that Dr. Scott led, and Dr. Mesa was there. There was an interesting doctor from Arizona who is focused on nutrition. We’re really starting to see things change. I think 10 years from now, nutrition and exercise will be a major part of MPN patient treatment.

At this seminar, she was talking about the importance of diet and exercise. I used to go to ASH (American Society of Hematology) every once in a while, and early on, there wasn’t any real discussion of diet and exercise. Every once in a while, someone would talk about it for 15 minutes. 

It’s really starting to change now. I think doctors realize now that it has to be a comprehensive treatment and that food does heal the human body. The right foods, as you said earlier, are critical to reducing inflammation. 

Inflammation drives almost every cancer or disease in the human body. As well as part of my diet and exercise, something I focused on is to get my inflammation down to as low as possible. I’ve done a pretty good job with that.

Importance of mental health

Andrew, TPS: We’ll all, I think, need this. I know I’m working on my diet now, and I think we all want to know what we can do on our end? Beyond the medications or shots, what can we do to put ourselves in the strongest possible position?

Jeremy: I also think — and we don’t talk about this enough — mental health awareness and treatment is very important. I saw a big shift in my attitude when I went to a therapist. I had a person that I could actually talk to about how I felt about possibly dying or my life being impacted. 

I think everybody needs to have that option and consider it. I was driving my doctors nuts at one point because it was very hard to tell when I’d get sick, was it related to my polycythemia vera at the time, or was it related to something else? 

I needed to calm down, and so my therapist got me to start meditating. Although, I have to say, Dr. Schrier was big on meditation. Those things are really helpful. It’s not just about diet and exercise; it’s about healing the body overall. 

All of those things contribute to that and are very important aspects that all MPN patients should explore. Today versus 1989, a lot more patients dabble in some sort of meditation and alternative treatments that they take in consultation with their doctors. You have to be really careful in going off into the la la land of supplements.

»MORE: Read other patient experiences on yoga and meditation

Do you believe this happened for a reason?

Andrew, TPS: Jeremy, 33 years. Many of the people you first met in the very earliest days of the internet are no longer with us. Thank God you are. I don’t know if you’re religious or spiritual at all. Do you ever think there’s a reason? You’re a voice now. You’re a pioneer who’s still with us. It gives you purpose.

Jeremy: Yeah, definitely. I think that priorities shifted in my life. It didn’t happen overnight. It took me about 10 years to get into a state of mind where I was thinking more about things besides work, because I was an A-plus personality. My career was everything. I was missing out on a lot, but I did not know that. 

I always say that an MPN is both a curse and a blessing. The blessing part is that it reminds you how short life can be. It doesn’t mean that you won’t live for 30 or 40 years with the disease, which is a huge advancement compared to 20 or 30 years ago. 

At the same time, it’s a wake-up call for you to adjust your life. You should take advantage of that because you can get too focused on all the things going on inside your body. 

The doctor appointments, I would say, in my mind are the most draining [because of] all the time of having to see the doctors. I kind of created my own mess by having 3 hematologists. I’m to blame for part of the problem. 

Again, this is the blessing part. I think the quality of my life is better today than it was 25, 30 years ago, because I’m more spiritually in tune. I’m not a religious person. The Jewish religion is we’re always wrestling with concepts and ideas. 

I wrestle with a lot of concepts. I have had some issues that I’ve dealt with my therapists on about feeling guilty. Why me? Why, out of all these other people, am I still walking upright? I think some of those things are normal day-to-day stuff that sometimes creep into the crazy mind.

Looking toward the future

Andrew, TPS: I’ve gone through the same thing. I fortunately have a wife of 37 years, who’s a great supporter. Exercise is a bit of my therapy as well. I can imagine you on that 100-mile bike ride and the cadence of it. Thoughts can be with you there, too. How do you feel about the future? 

30-some-odd years. You’re doing your podcasting now, but certainly there’s an uncertainty both with the MPN, and then you have this other condition like I do, CLL. How do you think of tomorrow, next week, next month, next year?

Jeremy: I do sometimes. I don’t know that it’s that productive. One of the things Dr. Schrier had me do was set up goals and write them down. I was going through a divorce at the same time I was diagnosed, and I won custody. My kids were 5, 3 and 1.5. My first goal was to see them graduate high school. 

Then as we passed these goals, Dr. Schrier would have me reset them. Then we kept developing them. My goal of today is to make it to 70. My number-one goal is to have the best quality of life that I can have for whatever time remaining that I have. 

I was on a 767 that almost went down over Dallas several years ago. It makes you think about, “Wow, the disease isn’t going to get me. The plane will.” I just try and stay positive. Everybody has their dark moments when you’re alone, and you’re like, “Oh, man, I got that bone pain.”

It’s not going to go away, but all you can do is give yourself the best opportunities, stay educated, [and] have good doctors, which is very critical. The top doctors have access to some of the drug development that’s going on. As an MPN patient, it’s hard not to be positive these days versus 20 years ago, because there’s so many new drugs being developed. 

I don’t know — other than a stem cell transplant, which sometimes works, sometimes don’t work — whether there’ll be a cure, but I think there’ll be drugs that will allow us to live even with myelofibrosis, at some point over the next 5 to 10 years, that will allow us to live like you have PV or something for a 30- or 40-year lifespan. 

I believe interferon is an important drug that can allow you to at least slow the progression of the disease down. Anything you can do that means there’s more time for you and your life, hopefully. None of us know what’s going to happen in the future. That’s a hard challenge. 

You bring up a really good question. You can get sucked into the negativity of all of it, and it is exhausting. I take more pills than I ever thought I would. Then there’s the fact that I’m much older now than I was when I was first diagnosed. There’s the normal bumps in the body that you get from just being older and the aches and the pains that you would have whether you had this disease or not. 

With all of those things compiled together, you have to get a reflection and just kind of take it with a grain of salt. Whatever happens, happens. I never thought I would be alive to see 5 grandchildren born into this world. I’m very blessed by that. 

COVID scared the crap out of me, and I’ve made it through that, knock on wood, thanks to Evusheld. Life’s a crapshoot no matter what, whether you have a disease or you don’t. Anything can happen at any time. 

I think it is important to have a positive attitude going into this. The more negative you are, I definitely believe that there is some karma out there that can make things worse if you go all dark.

Conclusion

Andrew, TPS: I just love your wisdom, Jeremy. I got to really pay attention to that Mediterranean diet. I used to exercise all the time. I’ve sometimes been tired, but maybe I’d be less tired if I was exercising. I got to work on that, and I think looking to the future. 

You’ve told me you’re 63. You’re shooting for 70 now, and I wish you all the best with that. How about 75 or 80? Wherever you get, though, it’ll be a blessing. I want to thank you, Jeremy, for really being a leading voice over time and now with your MPN Forum Live podcast, which I hope people will look up, and just being almost like a catalyst or a ringmaster for our discussions. 

As you said, there are all these things we can do with our doctors and our diet or exercise, but there’s also great strength in community. I know you foster that, and I’ve tried to foster that, too. So thank you. I just want to thank you on behalf of the community, Jeremy Smith. Thanks for doing that and for being with us today.

Jeremy: Thank you. It’s been a real pleasure. I appreciate you bringing me on.

Andrew, TPS: Andrew Schorr in San Diego, Jeremy near Portland. Both of us [have] myelofibrosis, are living with MPNs, and are devoted to the community so we can all do better.


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Breast Cancer Patient Stories

Christine’s Breast Cancer Story

Christine’s Breast Cancer Story

Christine Handy is a model, mother of two, and self-proclaimed Cancer Disruptor. Her life was forever changed when she was diagnosed with breast cancer at only 41 years old.

Christine used the experience to give back to the community. She is on the board of Ebeauty, a charitable wig exchange program for women who can’t afford wigs during treatment. She is also on the boards of People of Purpose and the Break Free Foundation.

Christine shares her story of becoming a thriver, advice for other patients on a cancer journey, and getting back into modeling for Victoria’s Secret after a series of surgeries.

  • Name: Christine Handy
  • Diagnosis (DX):
    • Breast Cancer
  • Age at DX: 41
  • 1st Symptoms:
    • Lump on left breast
  • Tests for DX:
    • Biopsy
  • Other Tests and Scans:
    • PET scans
    • EKGS
    • Echocardiograms
    • Mammograms
  • Treatment:
    • Chemotherapy
      • 28 rounds
    • Surgery
      • Lumpectomy
      • Lymph node removal
    • Mastectomy
    • Maintenance therapy
      • Tamoxifen for 8 years

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


About Christine

Introduction to Christine

Who am I? Well, my name is Christine Handy, and I am called the Cancer Disrupter for a lot of reasons. A lot of very good reasons. I do like to disrupt the beauty space as a whole. On a personal level, I have two beautiful sons, 24 and 21 years old, respectively. 

I call myself a self-proclaimed athlete. I love sports, which is maybe why I chose to live in Miami because there’s a lot of outdoor activities I can participate in. I like to be on the sand, usually walking, and I like to play tennis and paddle sports and row and things like that. 

I am a big believer in serving and altruism. In every capacity of my life, I get to do that, whether it’s the nonprofit work that I’m a part of or in the social media space. I do work as an influencer, writer, student of life, mentor to breast cancer patients and survivors, mentor to prisoners because I work in that space as well.

I have a lot of different jobs. I wear a lot of different hats, but everything that I do professionally is a direct result of my heart and what I want to contribute to the world.

Career as a model

I was raised in Saint Louis, Missouri, and I started modeling there when I was 11 years old. I really had to kind of push my parents to allow me to get into that space. They weren’t the ones that wanted me in it. 

When I turned 16 and I was able to drive myself to jobs, I was very independent. I missed a lot of school, but I was a very good student, so I would bring my backpack and my homework on photo shoots. While they were doing my hair and my makeup, I was studying. 

I ended up doing well in the modeling space for many, many years. Ultimately, I stopped modeling when I was diagnosed with cancer. Of course, I didn’t think I would ever go back to it, but I ended up going back for a different reason. 

I really loved the modeling space. Of course, it has different issues within the industry. Some of them permeated into my own life. I dealt with an eating disorder when I was quite young. But as a whole, modeling to me felt very safe because I’d been in that industry for so long. 

Getting back into modeling

When I ultimately lost my chest in 2020, subsequent to my breast cancer diagnosis and implants and mastectomies, I ended up going back into the modeling space at 50 years old. I felt like there was a need to show that women without chests, their beauty is not lost.

You are still whole, and our self-esteem is what keeps us whole. Our faith is what keeps us whole. It’s not external beauty or external things like materials. 

I took that opportunity in 2020 to say to my modeling agency and to my manager, “I’d like to go back into modeling, and this is how I want to do it.” It was a little bit difficult because they didn’t see or have the vision or the emotion that I did. It took me to really push myself and them to understand what I really wanted to do with modeling. 

I went up to New York, and I went up to New York Fashion Week. I’d never been a runway model. I went up there with a vision to start walking in New York Fashion Week. Of course, now I was 50 years old and with a concave chest. 

But I found my way into fashion shows and in front of designers and said, “My name is Christine Handy. I’m the beauty disruptor, the cancer disruptor. I’ve been a model for 40 years, and I’d like to walk in your show in February.” 

Modeling with a concave chest

There’s women that need to see this. Women need to see somebody with a concave chest in the largest runway show in the world. That matters. Ultimately, several designers hired me, and I put on high heels for about a month prior to the shows because I needed to get my legs well versed in wearing heels again and also very high heels.

It was a very interesting process for me, and I showed it all over social media. People were rooting me on to completely figure out my walk. I did some YouTube tutorials and figured out how to do it. I ended up walking gracefully and beautifully in these shows, and it had a big impact. 

Ultimately, I’ve walked in three seasons since then, including Miami Swim Week — which made a big splash, no pun intended — but it did make a big splash, because again, I was 50 years old and a concave chest walking in the largest swim show runway show in the world. 

That took a lot of courage and bravery, but I felt like I had it inside of me and people, again, needed to see that. That’s a little bit of the history of my modeling career and why I continue to do it.

Christine’s Breast Cancer Journey

1st symptoms

I was 41, and like I said, I was a self-proclaimed athlete, a model, young enough, and didn’t have any family history. I felt kind of immune to getting cancer. Why would anybody like me get cancer? 

I was allergic to sugar. You hear sugar promotes cancer and these types of things. I didn’t fit the box. It didn’t occur to me that I was going to have breast cancer. 

I was in New York for a doctor’s appointment. I had just had a fused arm from an unfortunate incident with another medical issue, not cancer. 

I was in the shower of a hotel, and my arm was hanging out of the shower because I have the huge cast on, and now my wrist was just rebuilt with cadaver bones and a cadaver Achilles tendon. 

I’m literally 41 years old, trying to figure out how am I going to drive with a fused arm? How am I going to cook? How am I going to take care of my kids? I’m trying to deal with the gravity of that situation. 

I’m in this hotel in New York. Previous to that cast, I had several for months. I was kind of used to having my arm out of the shower, but I wasn’t used to using soap. I would just pour liquid soap over my shoulder and let it run down my body and wash my body.

But in this particular hotel, they didn’t have any liquid soap, so I took the bar of soap. I washed my left breast, and I immediately felt a lump right beneath the surface of my breast. I thought, “There’s no way I have breast cancer.” Again, I have no symptoms. I have no family history. I have no reason to believe that. 

Receiving the breast cancer diagnosis

Ultimately, five days later, I was diagnosed with an aggressive form of breast cancer. The ironic part — well, there are so many ironic parts, which sometimes you have to think about the irony in things and think, “Maybe there’s purpose to this.” 

For me, I was diagnosed on October 1st, which is the first day of breast cancer [month]. Instead of looking at it as now I’m going to be tortured for the whole month, seeing it all over the media and NFL and the pink socks and the pink this, I thought, “There must be a reason for me to be diagnosed on the 1st.” 

The other thing is I wasn’t able to digest the fact that I just had a fused arm, and now I was facing chemotherapy, which had to be postponed for 30 days. If they had started the chemotherapy, the cadaver graft in my arm would have dissolved. 

I thought, “This is some sick joke, right? I have cancer. Now I can’t even treat it.” That started a whole new level of duress into my psyche, into my emotional state.

»MORE: Patients share how they processed a cancer diagnosis

Hitting rock bottom

Ultimately, all of that pain and suffering and distress multiplied so greatly that I thought, “I am really at rock bottom here. I mean, I feel so deflated in life. I feel like, okay, my beauty is now going to be gone. My external value’s gone. Who will love me? I’m now handicapped in my right arm, and now I’m facing 28 rounds of chemo. I have no idea if I’m going to get through this.” 

When I hit rock bottom, I had a choice, and the choice was you can either be a victim or you can be a vine. You can either show courage to yourself and your community and your family, or you can show despair. You can also show compassion to yourself, or you can show pity to yourself. 

I went through this mental gymnastics of, like, do I really want to show pity? I kind of did in the beginning. Do I really want to show compassion to myself? I’m kind of mad. I had to really dig out of this hole with a lot of grace for myself, with a lot of courage. 

I was facing a ginormous amount of distress and changes in my life and a lot of questions whether I was going to live or die. Again, I had young kids. 

For the next 15 months of chemotherapy, I spent a lot of time doing a lot of introspective work and saying to myself, “If you do get out of this, if the outcome comes to your survival, then let’s not try to survive. Let’s try to thrive. And what does that mean? What does that look like?” 

I have a voice, and I’m going to use it.

A transformation through words

I just decided in that moment I’m going to take notes. I’m going to keep a journal of the people that are helping me, the things that are going wrong, maybe the people that aren’t helping me, so I can remember all these moments and so I can write a book about it. Maybe that book can impact somebody. 

That’s when I decided to write my book, and then I ended up publishing it. I was well and healthy, and it became successful. The other reason I wrote my book was because there wasn’t a book. There wasn’t a novel about a journey from start to finish and the good, the bad, and the ugly. 

It wasn’t very appealing about me. My personality wasn’t so attractive before I was diagnosed with cancer. I was very self-serving, and I was very materialistic. I kind of filled myself up on what society wanted from me. 

To go from that to living a life of serving and altruism, there’s quite a transformation, so I wanted to show that in my book. This is how you can do that.

Sharing your story of hope

My book is becoming a film, and one of the reasons why I’m so thrilled about that [is] not because it’s my story. Whether it’s a book or a movie, so often we see the protagonist or the main character die. Let’s say “Philadelphia,” the movie with Tom Hanks, or “Steel Magnolias.” 

Take your pick. There’s a lot of illness movies out there that have been very successful movies, but typically the protagonist dies. When I was first approached about having my book made into a film, I said, “This will be different for the movie industry because I’m alive and I’m thriving. Wouldn’t that be a nice story to have?”

Of course, if it’s a film, it’s a bigger audience of hope. That’s what I’m trying to do. You always get criticized, of course, if you have a big platform. But people say to me, “Do you want a bigger platform?” Of course. I have such a beautiful story of hope; I have a light in the world. I have a voice, and I’m going to use it. 

But I’m not just going to say, “This is the good part. This is a success. I don’t really care about the highlight reel. I care about the whole reel.” That’s what people are attracted to about my story. I will tell you the mess I was in, and I will tell you the vulnerability and the despair I felt. 

I didn’t want to get stuck, and I didn’t want to get paralyzed in that. Ultimately, I didn’t run away, of course. Sometimes people don’t get out of that mess, and that’s why I think these types of stories are so powerful.

Physical impact of cancer

I was already depleted when I was diagnosed with cancer. I had had an infection in my arm for seven months that was untreated, and ultimately my arm was fused. Now I have cadaver bones that are trying to adhere to my body, and I’m trying to figure out how to live a life being handicapped. 

From a physical standpoint, my body was depleted. My hair was already thinning, and that was from my arm issue. To go into chemotherapy depleted, and I was already underweight because of that. 

Meeting the oncologist

At that point, I didn’t trust a lot of doctors because my arm doctor really had disappointed me. When I went to see my oncologist, I had already decided I’m not going to trust him. I just was like, “I’m not trusting doctors. They are not honest. Now my arm is fused. I trusted this guy. He was supposedly the best doctor, and now he’s let me down.” 

I just had my guard up. The first time I saw my oncologist, I walked in the office, and he said, “Oh, you’re the girl with the arm.” He immediately diffused my fear, my anxiety. My walls already started to come down because he knew my story. He took the time to make a joke about it, and it was endearing. I immediately started to trust him. 

He basically said to me in that appointment, “You’re not going to like me because you’re going to go through a lot of chemotherapy, and your body is already broken down.” 

And he said, “And there are going to be moments where you and your friends and your family are going to think that I’m killing you or the chemo is killing you. It’s going to feel like that, but when you’re done, you’re going to be done because I don’t ever really want to see you again.” 

 If we take our hope away, we have nothing.

It was that kind of brash honesty, but also kindness, to say, “I don’t really want to see you around here anymore.” That really stuck with me. I thought, “Okay, I get it. I’m going to go through a lot of help. But if I can just survive this, I’m going to survive life. I’m going to be here to tell the story.” 

Survivorship and Thrivership

Having hope in the darkest moments

That gave me hope. I think when people are giving a diagnosis and say, “Go get your affairs in order,” that takes away hope. When hope is lost, what do we have? The bags and the gifts and the accolades from society and the success — that makes no difference. But if we take our hope away, we have nothing. 

He gave me hope, and so I stuck with that, even in the darkest moments. After my mastectomy and after 18 rounds of chemotherapy, I was able to get a mastectomy, and then I had more chemo, and then after my third revision of my mastectomy and after my faulty implant. 

There were many, many surgeries where I thought, “Okay, this is the last one,” and then they kept going. Even though they kept going, I felt hope. I think that’s the biggest reason why I like to share my story, because it is a story of hope, and we can’t take hope away. 

I’ve had about 23 non-elective surgeries in the past 11 years. I’ve had 28 rounds of chemo. I’ve had many complications from chemo. I lost three teeth because chemo gets in healthy cells as well. I have heart issues from chemotherapy. I have liver spots from chemotherapy. 

Surviving is ultimately getting out of bed. You don’t have to do anything but just try to get out of bed, and that’s enough.

I see doctors regularly, not just my oncologist, for checkups. I see multiple doctors, and that can wear you down. I had an implant issue and ultimately a MRSA infection in my chest, so my implants had to be excavated.

Physical and emotional pain continuing

I have had no shortage of complications. But through all of the complications, I’ve said to myself, “How can we use this? How can I help people with this new complication, with this new story of pain?” Physical pain, emotional pain, and sometimes the emotional pain got to me, where I was like, “Is this ever going to end?” 

I think that’s a subject that cancer survivors should talk about, because a lot of times when treatment is over or the perceived treatment is over, people go away and they move on with their lives, which is expected. 

I’m not saying it’s wrong, but people need to know that there are people out there going, “Are you doing okay?” Checking on them, right? Just a text. Doesn’t have to cost money. It doesn’t have to cost you your resources or your time. 

These are things that if caretakers hear the story, they go, “Oh, you know what? I’m going to text Susie today because I know she finished treatment a year ago, but I wonder how she’s doing.” 

As survivors or patients, we can teach the world how to care for the ones that come after us. That’s our responsibility, so I take that very seriously.

Surviving and thriving

Survivorship certainly looks different for everybody. How it’s impacted them is so different. You can have the exact same disease. You can have lung cancer, you can have breast cancer, or you can have a brain tumor. Everybody’s tumor is going to be different, everybody’s emotional impact is different, and their physical impact is different. 

One size does not fit all, which is why it’s important to have multiple stories and multiple points of view. When I talk about survivorship, it looks different for me. I don’t want to alienate people by saying, “This is how I’ve survived.” 

I try to teach people to survive. It doesn’t necessarily fit other people. I try to look at it as thriving. I try to look it as I haven’t just survived. I don’t want to just be a survivor. I want to be a thriver. 

What it means to be a thriver

For me, that looks like giving back to the community on all levels. If that costs me something, if that’d cost me some emotional distress by sharing my story, if that caused me some financial distress, that’s okay for me. 

Because I know that when I was diagnosed, I felt like I was alone. I felt like I was alone in the diagnosis. I felt like I was alone in the journey. Not because I didn’t have friends and family there. I did. But again, if you don’t have contemporaries that have gone through it, you don’t really know. 

For me, thriving is helping to give people hope because I’m living a story of hope, but also, again, talking about the pain and the complications and why it’s so important to have these conversations. 

I also talked to breast cancer survivors who will say to me, “Today was the day of my diagnosis two years ago, and I can’t get out of bed.” Surviving is ultimately getting out of bed. You don’t have to do anything but just try to get out of bed, and that’s enough. 

Teaching grace

I think one of the most important things that we collectively can do as survivors and as a community of people trying to help cancer patients is to try to teach grace. Take baby steps. Give yourself enough grace today to get through the day, even if it looks bad. 

Give yourself enough grace today to forgive yourself if you’re angry, to forgive yourself if you’re mistrusting of doctors. That’s okay. When we give ourselves the grace and we show grace and we teach grace, that ultimately builds up our courage. 

If I get mad at myself and say, “I shouldn’t have been rude to that nurse.” Okay, I’m having a bad day, and if I’m rude to the nurse, I can certainly go back and apologize to that nurse and say, “I’m sorry. This is my issue, not yours.” That’s grace. We all make mistakes like that, and that’s okay. 

If you give yourself the grace, then you’re giving yourself the courage, and then you’re building your self-esteem, and then you’ve got your feet on the ground, and now you’re on level ground. Now you’re not staying in bed. 

Survivorship looks different, but if we talk about it and we give each other grace, I think that’s a really good talking point, and that’s where we should start.

Advice for Patients and Caregivers

Letting go of the outcome

This is a tough one for people, and I truly believe this is the only way to survive. I think you have to get rid of the outcome. 

When I was diagnosed with cancer, I asked a friend’s mother who had been diagnosed, “When do you stop being afraid?” She was 10 years out, and she said, “I’ll let you know.” 

I thought, “Yikes, that’s going to be a long time. I don’t really want it to be that long. I want to get over this quicker.” I figured out a way to stop worrying about the outcome. I had no idea in chemotherapy whether I was going to live or die. When I was so fixated on, “What if I die? Who’s going to have the privilege of taking care of my kids?” 

That’s just anger. That’s fear, and then anger. Fear translates into anger. When I said to myself, “Okay, enough of the anger. Enough of the fear. Don’t worry about it. Just have faith and just show courage today.”

Show courage for yourself, and then that may permeate to your children. That may permeate to your environment or in your community. 

Not being afraid anymore

In the beginning, I was like, “I can’t let this go. I need to know if I’m going to live.” But when I practiced it day after day after day after day, I finally said, “Okay, it’s out of my hands. I cannot control whether I’m going to live or die. I cannot control whether I’m going to get cancer back. So why am I fixated on this fear?” 

I had to figure that out inside, and once I figured it out, I let it go. I don’t ever think about getting it back. People ask me that all the time in interviews. They’re like, “How often are you afraid?” I’m not afraid. The reason is I let go of the outcome. I’m fixated on faith. My measure is not of this world, and that’s how I live my life.

Did you work on that internally or get help from someone?

That I figured out on my own. Although I was showing people courage, I was super mad inside. I thought, “Wow, this is a really double standard because I’m showing people that I’m hopeful, I’m nice to the nurses, and I’m nice to my friends when they show up.” 

I was mad, and I was questioning my faith. I was questioning my life. Why was a model? Why do I feel sad that I lost my beauty? Why was that important to me? Why am I so fixated on the fear? Why am I so worried about getting through this and getting in the future? 

I really had to come up with a plan for me. In the beginning, somebody said to me, “People are watching you. Be very careful how you show this journey.” And that really stuck with me. Those are two issues. The outcome is one issue, but also showing courage and showing compassion and showing grace for myself. 

I got that from somebody who said to me in the very beginning, “People are watching.” I’m not talking about social media. I wasn’t even on social media back then. I’m talking about every single day, people are watching you. 

They’re watching you, how you react. They’re watching you, how you live your life. It’s just human nature. People were watching me, how I was responding to the diagnosis, how I was responding to the trauma. Was I responding from faith? Was I responding out of fear? 

I wanted to have a legacy, even if it was just in my own family, that I wanted to respond out of grace. I wanted to respond out of faith. If I could teach one person how you respond is all that really matters, then I was helping myself ultimately.

Self-advocacy as a patient

This is not a popular answer. Maybe that’s why I’m called the Cancer Disruptor. Medicine is a business. Let that soak in. It’s for profit. Growing up, I was taught that doctors were to be revered, doctors were to be respected regardless of what they said.

As a woman, there was even more pressure. I would see my dad talk to his doctors, and his doctors would respond differently to my father than they would do to my mother. I accepted that. 

Well, when that happened to my arm, it became unacceptable. But here is the problem. It was inside of me. I didn’t have a very high self-esteem. My self-esteem had gotten chipped away for years in my life, in my profession. 

When I was diagnosed with cancer, part of my panic was I have nothing to offer the world because I’m losing my beauty, which is all that people care about. That was a self-esteem issue. 

So often we expect the world to protect us. We have to protect ourselves. It’s our job. That’s my job.

Needing self-esteem to be a self-advocate

Going back to the medical field, in order to be an advocate for yourself, you have to have a strong self-esteem. I didn’t have a strong self-esteem, so I wasn’t advocating for myself. You walk into these appointments, and you’re diagnosed with cancer, so you’re totally vulnerable.

It’s for profit, and you know that chemo is expensive. You have to say to yourself, “I have to ask hard questions.” I would absolutely tell people to bring somebody with you because half the time you don’t remember what they say because it’s so much. It’s so overwhelming. And take notes. 

All we can do is today. We can’t do tomorrow. We can’t do next year.

Here’s the other problem. A lot of doctors are on a time [crunch]. You got 5 minutes. You can sense that. They’re not going to tell you that, but you can sense that. You feel this pressure, like, “I better ask this really quickly, and I don’t want to ask too many questions because he may get annoyed with me.” 

That all goes back to self-esteem. We should be able to sit in that office as long as we are getting the answers that we deserve. We’re the patient. That is definitely changing in our world, but it takes sad stories like my arm for that to change, for people like me to stand up and go, “No, this is unacceptable.” 

»MORE: How to be a self-advocate as a patient

Believing in your worth

But I also have to take responsibility for myself and talk about the fact that I had a low self-esteem, talk about that I had to work on my self-esteem, and talk about how I did that, because that’s what people want to know.

How did you do that? Well, I took back my voice. I took back the power of the thoughts that I had. I don’t know what I used to call myself, but it wasn’t nice things. 

I changed those tapes in my head, and I started to say to myself, “You’re worthy of love. You’re worthy of doctors. You’re worthy of time. You’re worthy of this attention. You’re worthy of asking your friends for help when you need that.” 

If you don’t have a strong self-esteem, you won’t ask for that because you’ll be embarrassed or you’ll have an ego issue. What if they reject me? What if they say no? You’ve got to build your self-esteem in order to be an advocate for yourself. 

That’s a daily process. I have a little picture of me in a couple of different corners of my house. I look at that little girl, and I say to her on a day-to-day basis, “I will protect you.” Because so often we expect the world to protect us. We have to protect ourselves. It’s our job. That’s my job.

Viewing cancer as a season of life

When I was diagnosed, I thought, “It was so overwhelming. This is going to go on forever.” It’s just so much. I’m always going to have this now. I’m never going to be who I was before. 

I felt like I was changed forever. Looking back, it was a season of my life. If we can look at it as a season of your life, it looks very different. Maybe I wouldn’t have been so overwhelmed because I would have been like, “Okay, it’s a season. If I can get through this season, then there’s another season. Not all seasons are bad. There’s going to be a good season coming.” 

In the beginning of COVID, people would ask me all the time, “How am I going to get through this?” I’d say, “Like I did in chemo. It was a season of my life, and now this is a different season. It has a beginning, a middle, and an end. When it’s over, there’s a different season.” 

If you can just compartmentalize it like that, it’s less overwhelming. It’s less grandiose; it’s less big. All we can do is today. We can’t do tomorrow. We can’t do next year. Doing those types of things keeps us present and not afraid. 

If you think about the magnitude of 28 rounds of chemo, and I’m on number one and focused on 28 — how am I going to get 28? All that does is promote anxiety and fear and a low self-esteem. 

If I was going to number one, I’d say, “I gotta get through number one. I gotta get through today, and we’ll worry about next week’s next week.” That’s not easy to do, but if you keep reminding yourself this is a season, that will help you get there.

Help and Support

Importance of your support system

I also think it’s really important who you surround yourself with. I know people have heard that, but really take inventory, especially during cancer and diagnosis. If there are people that are just not a part of your team, it’s okay. 

They maybe don’t know how to act. They maybe don’t understand the magnitude. It’s okay to let those people go. They may be in your life in a different season, but maybe not this one. When I gave my certain friends that grace to kind of let go, that softened my heart, and that helped me not judge them. It also helped me not compare. 

I think we need to focus on collaboration and not comparison in general, and in particular when you’re going through a diagnosis. It’s not fair to expect people to just say the right things and to be there how you want them to be there without asking for it. 

I think that goes back to, again, the grace and also the grace of other people just saying, okay, you may not be here in the season, but I need people who are just going to cheer me on.

Borrowing courage from your support system

I also think that goes back to self-esteem and courage. I think if you have a strong self-esteem, the courage will come. I’ll say one more thing about courage. It’s okay to borrow courage from other people. 

When I was in the hospital [in] June of 2020, there was nobody allowed in the hospital other than COVID patients. There were no elective surgeries. So if you were in the hospital June of 2020, you were very sick. 

I had an emergency surgery to excavate my breast cavity for the 8th, 9th, or 10th time. I had like 104-degree fever, and I had this MRSA infection. They were taking me into surgery, and this nurse put these papers in front of me. I kind of lifted my head, even though it was hard to lift my head because I was so ill, to write down my signature. 

I looked at it, and it said “mastectomy sign.” And I looked at her, and I said, “I can’t be having a mastectomy. I’ve had mastectomies in 2012.” She goes, “Just for insurance reasons.”

Here’s the problem with that. That’s a label. I’m basically signing a label of me having a mastectomy, which it’s not true. 

Anyway, that’s a side note. I’m being wheeled back, and I have no idea what the outcome is going to be. I have no idea that my whole chest is about to be excavated. They don’t know what’s going to happen inside. They don’t know how big the infection is. 

I come out of surgery. The next morning, the doctors come in. They’re about to take off the dressings on my chest, and they say, “Do you want to look at it?” Of course, we all have masks on. Again, it’s June of 2020, right after COVID started. 

I don’t really want to show them how afraid I was, and so I say to them, “I don’t want to see it until I’m with somebody that I love.” I didn’t want them to unveil what I was about to experience probably for the rest of my life without somebody’s courage that I could borrow. 

I needed my mother’s courage. I needed my father’s courage. I needed my son’s courage. I didn’t have any courage right then. It was a very lonely and depleting stage of my life. When I talk about courage, I’m not saying that I always have the courage, even with a strong self-esteem. But what I’m saying is it’s okay to borrow from other people and even use that language. 

Just say, “Hey, Mom, I need to borrow some courage right now because I have nothing left.” I think it’s so important when you go through trauma and duress to remember it’s not all just on you. There are people out there that will lend you their courage.

Asking for help

You’ve got to get rid of your pride and your ego in order to ask for help. So often, especially for women, we’re expected to do it all and maybe not complain while you’re doing it, but to just suck it up. You got this. Come on. You got this. This whole women empowerment thing. 

Hey, listen, I got it. I’m pretty unstoppable. But I ask for help, too. My pride and my ego went away when I was diagnosed with cancer. I have a strong enough self-esteem to say, “I don’t got this on my own, and I need people to help me through it.” There’s a big difference.

How are you doing now?

I’m good. I do see my oncologist a couple of times a year. I’ve had PET scans and biopsies on different places. She keeps an eye on me. I was on tamoxifen for about eight years until it became an issue with my endometrium. 

Currently, I’m not on anything. I’m good. I feel very lucky. I feel very privileged. I feel like my journey had a lot of ups and downs, but in general, I feel like I’ve lived a very lucky life.


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Categories
Cancers Diffuse Large B-Cell (DLBCL) Non-Hodgkin Lymphoma Patient Stories

Leanne’s Stage 3B Non-Hodgkin’s Lymphoma Story

Leanne’s Stage 3B Non-Hodgkin’s Lymphoma Story

Follicular Lymphoma Transformed to Diffuse Large B-Cell Lymphoma (DLBCL)

Leanne had a high-stress career with long hours when she started feeling fatigued all the time. After a cough and abdominal pain led to a series of doctor’s visits, she was eventually diagnosed with non-Hodgkin’s lymphoma.

Leanne shares struggling to get a diagnosis for two years, processing the shocking diagnosis, and going through R-CHOP chemotherapy.

The experience rocked her world, and she also discusses how it changed her mindset, how it affected her friends and family, and how she manages anxiety.

This is an opportunity to take stock of your life and actually think about what do I want to keep in my life, and what things do I need to let go of? 

  • Name: Leanne T.
  • Diagnosis (DX):
    • Non-Hodgkin’s lymphoma
  • 1st Symptoms:
    • Fatigue
    • Persistent cough
    • Abdominal pain
  • Age at DX: 60
  • Tests for DX:
    • Blood work
    • X-ray
    • Ultrasound
    • CT scan
    • Laparoscopic biopsy
  • Treatment:
    • Chemotherapy
      • R-CHOP
      • 6 rounds
      • Infusions every 3 weeks

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


Pre-Diagnosis

Introduction to Leanne

I’m a person that loves being with other people. I’m an extrovert by nature, and all my life I’ve loved connecting with other people. 

I’m probably not as quiet in terms of my leadership anymore, but definitely that’s been the theme of my life. I’ve fit in wherever I’ve gone. It’s just been one of those things where I’m one of those connectors of people. 

First and foremost, I’m a mother. I’ve got two adult children — one that’s 33 and one’s 31 — and I’m a grandmother for the first time. My first grandchild was only born in February last year, so she’s almost one. 

I guess the theme of my life, too, has been one where I’ve been a high achiever. I’ve got several university degrees. I have a curious, inquiring mind and love to learn. 

I’m a creative thinker. I’m one of those people that if there’s issues or problems to be solved, I’ll always come up with creative ideas and solutions. I’ve used that throughout my career, where I’ve been able to bring innovative ideas and ways of doing things into workplaces. 

Leanne’s life now

I’m now 61. No longer working since I had the diagnosis, but still living a rich life, not worried about not working anymore, which is a curious thing given it’s been a theme of my life. 

For a lot of my time raising the children, I was a single mother. That was a juggling act, bringing both the ambition for my career and my ambition for a good, quality life and a good life for my two kids. 

But I’m pretty proud in the way that they’ve come together as human beings. They’re two very highly functioning adults, and both with their own great lives and careers, wonderful partners, and having a fabulous life for both of them. All in all, I’m very happy with the life that I’m having and have had.

I live in Australia. I live in a coastal town two hours just south of Sydney on the east coast of New South Wales.

1st Symptoms

Feeling fatigued

This was back in early 2019. I was working at that point for an aged care organization and was commissioning a very high-value new community and aged care home. I developed a new model of care and had traveled around Europe and Australia, looking at best practice to come up with models that I felt were right for this particular site. 

The spend was over $300 million on the site, so a lot was riding on it. I just felt incredibly tired because it was a full-on demanding kind of a role. I went to the doctor and just said I’m feeling really tired and not sure whether it’s menopause. I’m 61 now. I would have been in my late 50s then. 

They ran blood tests, and at that stage the results came back. Things were pretty normal except for my inflammation markers, which were raised. At the time, it was explained away by saying, “Oh, you must have been fighting off an infection, or something was going on.” 

So I just accepted that, but made a decision to change jobs because I thought I’ve now commissioned the community, the home. It’s been now operating for a couple of years. I feel like I can step away. While I love that job, it’s turned into a toxic kind of a love, and I need to look after myself. I took on another leadership role in another sector.

My nature is to throw myself into things, so even though I was feeling tired, I plugged away again, trying to achieve, I guess. 

Developing a cough

My son lives in London. I hadn’t seen him for 18 months, so [in October 2019] I went over to the UK and Europe for a three-week flying holiday. 

We went to the north of Italy. While we were traveling around there, I caught the flu and just couldn’t shake it. On the way home, I coughed. 

When I got home, I thought, “I’ll get over this cough. It’ll eventually heal.” Then that summer (our December, January, February) was a really bad time environmentally for Australia, and all around where I live were dreadful bushfires. The air quality was quite bad. 

It’s very easy to explain away this cough, thinking, “There’s a lot of smoke and soot in the air, and this cough is being aggravated by that.” It seemed to be worse at night. In February of that year, I thought, “This is really getting me down,” and I went to the doctor, the GP, and said, “I think I need an X-ray. There’s something wrong with my lungs or something because I cannot stop coughing.”

At that point, she said to me, “I think it might be post-nasal drip. Here’s some things. This stuff to spray up your nostrils. That’ll solve the problem.” Anyway, I tried that. Nothing, Nothing. 

Then I went back, and it was March 2020. COVID had hit, and she said to me, “We can’t send you over for X-rays because all of the radiology is being kept for patients with COVID, and you don’t want to be in that environment.” I kept coughing away, thinking this will resolve. 

Then it wasn’t until about June that the situation with the radiology eased up enough where I could go and have a lung X-ray. At that point, the X-rays were clear. There was nothing wrong with my lungs. 

»MORE: Read more patient experiences with first symptoms of lymphoma

Seeing an ENT, cardiologist, and lung specialist

I was sent off then on a round of visits with specialists. I went to an ear, nose, and throat specialist, looking for this post-nasal drip problem. They put a camera down my nose into my throat. He said to me, “I can’t see anything wrong with your ear, nose, and throat. Your throat is inflamed.” And obviously it was, because I’d been coughing for months. 

He said, “I think it’d be worth trying an alkaline diet,” which basically is like a vegan diet, so that’s what I was doing, and avoiding dairy and meat and so on, and just very much a plant-based diet. 

Then there was a question, like maybe there’s something wrong with your heart. I had an appointment to see a cardiologist, who wanted me to have an ultrasound of my heart before I went. So I did that, went and saw him. That was all perfectly normal. 

Might I say, each time I saw these specialists, you’re looking at — I know the health system’s different in Australia — like 400 AUD, which is more than 500 USD, each time I went. That’s not claimable on my health insurance. It’s just part of the picture of feeling desperate, thinking I’ve got to find the solution. 

After that, I then later in the year saw the lung specialist, who said to me, “No, I don’t think there’s anything wrong with your lungs either.” 

Back pain and gastroenterologist

On I plugged, and then we’re now in February 2021. I’d gone away to Canberra for my girlfriend’s 60th. While I was staying away, I had this incredible burning sensation in the flank of my back and just couldn’t get comfortable in bed. I thought, “Gosh, I’ve pulled a muscle. There’s something weird going on here.” 

I went to the physiotherapist, thinking it was a pulled muscle. That didn’t help. In the end, I went to the doctor again, who said, “This is very unusual,” and again thought it might be reflux or something. Why would that be a burning sensation? 

[The doctor] sent me off to the gastroenterologist. The previous year I’d had some weird pains in my stomach, and the doctor said, “Maybe you’re constipated.” I knew I wasn’t. There’s always sort of trying to explain things away. 

I went to the gastroenterologist, and she said to me — this is in May of 2021 — “I’d like to get a CT scan of your abdomen, and we’ll get an idea of what’s going on. Once you’ve done that, we’ll get you to do an endoscopy and a colonoscopy, so we’ll know from an internal perspective.” 

The results of the CT scan came back, and when I looked at the report myself, I said to [the GP], “Why does it say my spleen is enlarged and some of my lymph nodes are enlarged?” Again, it was explained away. “Oh, you probably just had some sort of infection.” That’s at the point where it should have been picked up.

Now [for] the gastroenterologist, [the] endoscopy, colonoscopy, [and] everything was normal as well. They took biopsies. Everything was deemed to be normal. 

Excruciating pain

It was now getting to be about July [or] August of 2021, and I was feeling really tired. I stopped working in that new job that I had in October 2020. That was full time. That was a CEO’s job. 

I decided to take a little break just to sort of recharge. Then I picked up consulting work and was working maybe three days a week. By July of 2021, I thought to myself, “I’m still really tired. I’m going to cut back and just keep one client,” rather than the couple that I was doing some work with. 

Anyway, it was in November of 2021. I woke up in the middle of the night with excruciating back pain. I thought to myself at that stage — still coughing, by the way — “Gosh, I must have a kidney infection.” 

The pain was so bad I could have rung an ambulance, but I didn’t want to end up in hospital. So I thought, “I’ll just hang in there.” [At] like 8:00 in the morning here, if you want to get in to see a doctor, they leave some spaces open for last-minute emergency.

So I rang up, and I said, “I need to see a doctor immediately. I don’t care which doctor I see,” because normally I was seeing one doctor. “I’ll just see anyone. I think I’ve got a kidney infection. I need medication.” They fitted me in with a trainee GP who I’d never met before, but I was desperate. 

Diagnosis

Seeing the GP trainee

This is all through the pandemic. I walked into the doctor’s surgery with my mask on, went into her rooms, and she started talking to me. I began to cough, and she said, “You shouldn’t be here. You might have COVID.” 

And then I burst into tears and said, “I haven’t got COVID. I’ve been coughing like this for two years.” She went, “Oh.” Anyway, she got me to go away and do the urine test to check for my kidneys. While I was away, she got into my files and started reading the reports from all of these tests that I’d been having done. 

I’d had the X-rays on my lungs, I’d had the ultrasound on my heart, I’d had the CT scan of my abdomen, and in between that, I’d had some other weird symptoms. 

I had a lump on my shin, and so I’d had ultrasounds on that, which was sort of a raised red lump and which possibly was a lymph node or something. But no one did a biopsy on that. 

When I came back and she tested my urine, she said, “No, there’s nothing wrong with your kidneys, but I think there’s something quite seriously wrong that I can see from your results. While you’ve been gone, I’ve booked you in for another CT scan this afternoon, and I need you to do some blood tests before you leave.” 

She said, “I’ll have the results back tomorrow morning, and we’ll be in touch. Make sure you get that done today.” So off I went. I did those things, thinking, “Oh my gosh, what is going on?” 

The diagnosis

The next morning at 8:00 in the morning, I got a phone call from the doctor’s surgery, saying, “Doctor would like to see you later today, and you’ll need to bring someone with you.” 

I was panicking, and my appointment wasn’t until 5:30 that afternoon. I went, and I had my partner with me. She was the most delightful person. If there was somebody to break news like that, just really empathetic and kind. I sat there and thought, “I cannot believe this.” 

Processing the diagnosis

This is in November 2021. In April of 2021, I turned 60, and thankfully I had a big 60th birthday party. At my party when I was giving the speech, I’m saying to everyone, “This is a milestone birthday, turning 60. I’m two-thirds of the way through my life.” 

Because all my relatives that I tend to take after all lived into their late 90s, I really felt strongly that’s going to be me. So I’m saying, “Right, we’ve got another third of my life. I’m so excited to see what that third is like, and I’m so glad you’re all with me. Let’s go on this new journey for the final third of my life.” 

One of my passions in my career was working in aged care and looking at how people lived in older life and living well. It’s all about having purposeful days and feeling really good about getting older, but feeling like you’re active and doing what you can with your life. 

Having seen all of that and [having] worked with a lot of older people, I thought, “That’s going to be me. I’m going to be really active, live a long life, and really give back in a whole range of different ways.” 

When I found out I had cancer and it looked like lymphoma, I was thrown. It was such a shock, terrible shock. We came home. We sat out on the balcony, and I just thought, “I just can’t get my head around this.”

Seeing the hematologist

She had rung the head hematologist for the region that I live in and made an appointment for me on the following Tuesday. When we went and saw him, he was absolutely delightful and reassuring. He said to me, “I have a feeling, based on your symptoms.” Prior to that time with the pain in the back, I’d started having night sweats. 

He said, “I think you might have diffuse large B-cell non-Hodgkin’s lymphoma. We need to do some tests to find out for sure.” He said the next step is to go and have a needle biopsy, which I did. With those sorts of biopsies, you’ve got to wait seven days for the pathology to come through to confirm what the cells have told. 

I went to that next meeting by myself because it was in early December by this stage. I was on a board of directors, and there was a Christmas party on at lunchtime. My appointment was at 10:00. I thought, “I’ll go to the appointment and then head on over to the Christmas party.” 

I live 40 minutes away from the hospital where the hematologist was. Because I was so overwhelmed and stressed by the diagnosis, I was driving on the highway and had an anxiety attack in the car. So I’m driving and thinking, “I’ve just got to keep breathing.” 

This is May. A person who used to be able to cope with absolutely anything — standing up in front of a crowd and I could chat, wing my behavior through things that I wasn’t really sure about, just totally competent — having an anxiety attack on the highway. 

Calming down from anxiety

Somehow I got my car into the multi-story car park. I made my way up to the seventh floor, where the hematologist was. I’m sitting in the waiting room waiting to see him, thinking, “Breathe, breathe.” 

Just to distract myself, I got my phone out, and I started looking at social media. The night before, I’d seen a fellow who’d worked for me 15 years ago that had just graduated from university, his first degree. 

I’d written a little comment saying, “I’m so pleased and proud that you’ve been able to achieve this. Congratulations.” And then there was a private message. So I’m sitting in the waiting room, just had the anxiety attack, and there’s this message from this fellow. 

I read it, and it said, “Leanne, if it wasn’t for you, I wouldn’t have done this study. You encouraged me every step of the way, and I plugged away as a mature-aged student, and here I am. I’ve got my degree. I’m now in a senior management role, and you are my role model.”

I’m reading this, thinking, “Aw.” He said, “Whenever there’s something tough that happens, I always think to myself, ‘How would Leanne handle this?’ And that’s how I do it.” 

At that point, I thought, “I’ve touched someone’s life. That’s so important to me.” Anyway, I wrote to him that night. I said, “You don’t know how important that message was to me.” I went into my appointment. I’d calmed down by that stage. 

The hematologist said, “Unfortunately, the results were inconclusive from your needle biopsy. It looks like you’ve got follicular lymphoma, but the symptoms you have don’t match up. We need to do another biopsy. This time it’ll need to be surgically done so we get a larger sample.” 

Strategies for dealing with anxiety

Anyway, at that point, I thought, “Whatever.” I was so anxious and overwhelmed by the thought this cancer is running rampant in my body, and nothing’s happening. Weeks are going by. I was so anxious. 

That’s something that not many people talk about. I really felt like I was losing my mind, to be honest. For a person that was so normally together and could handle anything, it shocked me to no end. I actually went back to that trainee GP, and I said, “I’m so worried about myself.”

Because she was a trainee, she had plenty of time to talk to me. She explained to me that when you have a diagnosis like this, you go into stress overload. The symptoms that I’d been experiencing — not being able to sleep and having huge anxiety and those attacks like I had in the car — were completely normal. 

When I heard that, I thought, “That makes me feel a bit better. It’s not going to be like this forever.”

But she said to me, “Let’s look at some strategies.” One of the strategies was whenever I go for a medical appointment, I’m not to drive myself because that’s just a recipe for disaster. 

Also, she did prescribe some sleeping pills and said, “Just take those for a couple of nights,” because I just needed some sleep to be able to cope. She also prescribed Valium and said to me, “This is highly addictive, so be very careful with it.” 

Just knowing I had it there as a crutch if I needed it was really all I needed. I did take a few, but they were the days when I started treatment because that was pretty full-on. That was such a help. 

Recovering during Christmas

Then on the 23rd of December, so two days before Christmas, I had to go in and have the laparoscopic surgical biopsy. Trying to find a surgeon just before Christmas was really problematic.

Fortunately, a beautiful surgeon made time for me on that afternoon of the 23rd, but then I had to wait over Christmas for the results of that with a very sore stomach.

Christmas normally every year is at my place, and the extended family come. That year, because I was feeling so anxious and stressed with a very sore stomach, I was here. Family stayed, but I didn’t do anything. 

The practice was in the past that I did everything and made Christmas beautiful for everybody else. It’s been a big lesson for me being able to step back and let others do rather than me doing for everybody else. 

Treatment

Starting treatment

On the 27th, the hematologist rang me up and said, “Right, we’ve got the results back. It looks like you’ve had follicular lymphoma that’s now transformed to diffuse large B-cell, so non-Hodgkin’s lymphoma. We’re going to start treatment tomorrow.” 

[For] the cancer clinic, we can normally go as an outpatient during the day. That was closed down between Christmas and New Year. “We’ve got to get you started straight away. I found you a bed in our oncology ward in the public hospital.”

In Australia we’ve got public hospitals, where everything is provided free of charge, or you’ve got the private. I’m fully privately insured, but the hospital closes down over Christmas to New Year. 

In I went to the public hospital in a shared ward. The only bed that was available was in the palliative geriatric oncology room. So there I was, looking at my future with these old people at the end of their lives. That completely upset me. 

Being argumentative at the hospital

It’s funny how I’m normally a very upbeat, glass is half full kind of person, but when I was in there, I was argumentative [and] extremely unhappy. Every time they wanted to take blood tests, I’d argue. 

Before all of this, the hematologist had wanted me to have a gated pool test on your heart to check on the functioning of your heart before you start any sort of chemo treatment. 

I’d gone in to have that test. Two of the radiologists had tried to find a vein to do the injection of the dyes, and they had jabbed and jabbed and jabbed. Bearing in mind I was at my wits end emotionally, I ended up saying, “That’s enough.”

I just left and got into the car and collapsed. I thought, “I’m not having one of those tests.”

When I was in the hospital, they said, “First thing first, we’ll send you down to have one of those gated cultures.” And in my argumentative state, I’m saying, “No way. I’ve got an ultrasound of my heart. That’s enough of a pre-treatment test. It’s not going to change the outcome of anything. I’m not having it.” 

There were all these conversations back in the office outside of the ward saying, “How are we going to deal with Leanne?” 

PICC line

Anyway, in the end, because I do have a bit of a problem with needles, that afternoon they sent me off to have a PICC line inserted in my arm. [It] was the best thing ever because I didn’t have to face needles and finding veins every time I went in for treatment. 

I did settle down after that, and do you know the way I settled down? I actually said to myself, “I have to surrender to this process because if I don’t, it’s going to kill me. Just the process and the stress of the whole thing. I’ve got to surrender and accept.” 

Those were the two words I kept focusing on while I was in that hospital ward because the doctor had said to me the day before, “Come in for the day. We’ll get you started on the treatment. Bring an overnight bag in case you have a reaction to something, but more than likely, you’ll be home.”

»MORE: Read patient PICC line experiences

Reaction to first treatment

Well, I was there for three days, and it just went on and on. I was there for over New Year’s Eve. I thought, “What a way to see in the New Year.” When the treatment started, that’s when the PICC line was there. 

The nurses were just delightful. But there I was, lying in this hospital bed. When the rituximab started, so R-CHOP, that went on for hours. That went on all morning, the infusion for that. I couldn’t believe how long all of this took. Then the remaining drugs took the rest of the afternoon. 

That night I slept so well because I think I was just exhausted emotionally and physically from the whole thing. They monitored me for the next day, and then I could go home. 

Then four days later, I had an appointment back at the hospital to meet up with the hematologist. My whole gastrointestinal tract was riddled with Candida, so I just felt miserable. 

When I went in to see him, he prescribed medication that I ended up having to take along with everything else for the remainder of the time that I was being treated to make sure that never happened again, which made me very worried about my gut health. But there were bigger fish to fry than worry about that at that point. 

Neuropathy

After the second round, I started having incredible neural numbness in my fingers and feet. I went back before my third round of treatment, and I said to the hematologist what was going on. I’m really worried because I understand that this nerve damage can be permanent. 

I wanted to get back into playing the piano, because when I turned 60, I was thinking, “What other things do I want to bring into my life that’s creative?” I said, “I cannot play the piano. My fingers are numb.” 

Anyway, the drug that was causing that I think is called vincristine. They ceased that from that point on, so I didn’t have that in my regime after that. Through the dialogue, the conversation, and better understanding what was going on calmed me down. 

What was your reaction to the GP trainee figuring this out after two years of symptoms?

I was extremely angry and upset about that. When the trainee GP, gave me the bad news, I said to her I always worried about the CT scan that I’d had in May. I’d asked my normal doctor, plus another doctor in the practice who I’d gone to to have a skin cancer check, to get in and have a look at my file. 

[It was] because I just thought, “Why would my spleen be enlarged?” I didn’t understand the importance of looking at the size of lymph nodes. Not being trained medically, I didn’t understand that. But I thought it’s very unusual that my spleen is enlarged. Maybe that’s explaining why I was having abdominal discomfort in my left-hand side. 

Thank God I crossed paths with her, because if not, who knows how much further along I would have gotten?

Those two doctors, as well as the gastroenterologist, did not say there was an issue. So I was extremely upset about that. The trainee GP said to me, “We can’t worry about that now. We’ve got to accept that that’s happened and move forward.” 

Going to former GP for a skin check

It sat with me for quite some time. About July last year, I was due for another skin cancer check. In Australia, because we’re raised in the sun and at the beach and often [never] wore a lot of sunscreen, it’s just a standard thing that [when] we get to a certain age, we get our skin checked, usually annually.

The GP I used to see, who’d been explaining things away — talking to me about lifestyle, medicine, and relaxation — was the doctor who’s now moving into doing skin checks. So I went to see him because I thought this would be really important for him to see me now. 

Anyway, I was in the waiting room and waited 40 minutes, much longer than normal. I was all dressed up, but I had my wig on because I had next to no hair. When I went in, I looked pretty normal because I had this wig on. 

An apology from former GP

He said to me, “Leanne, I’ve just been reading through your file, and I’m so, so sorry that this has happened to you. I cannot understand how I missed this. I’m going to spend a lot of time reading back over your files and learning from this so that it never happens again. I am so sorry.” 

That was important for me to hear. We spent a fair bit of time talking about what had been going on and how I felt. Then when it came time for him to do my skin check, I said, “Can you check my scalp while we’re at it? Because I’ve just noticed some marks up on my scalp.” 

He said, “Sure thing,” and then I ripped my wig off, and that was the biggest shock he got. He didn’t realize I had a wig on. Then when he saw me with no hair, I could see tears in his eyes, and it really upset him. 

I thought, “I’m glad I shocked you because this is not just a paper report. This is a person’s life. And you know that I’ve been coming to you for years.” Now, he has asked to see me every three months and doesn’t bill me for it just to keep in touch with me. 

Doctors not having enough time

For me, the fact that he apologized was very important, and the fact that he’s saying he’s learning from it. It makes me wonder, as a doctor, whether that’s a pivotal moment in his career of listening. I think a lot of our doctors — and I’m sure it’s the same worldwide — are so overworked. You’ve got an appointment. You’re in and you’re out within 10 minutes or so.

Even though I was presenting that all the time and getting all these tests done, no one was looking at my case holistically. Actually, it took that trainee GP who had time. She told me her appointments were an hour apart because it’s all part of her just learning the profession. 

She’d had all of the years of training and so on, but these placements were part of it. She had the time to sit and read and think and connect the dots. Thank God I crossed paths with her, because if not, who knows how much further along I would have gotten? So, yes, it’s not a good story. 

Processing a Cancer Diagnosis

Effect of cancer diagnosis on friends

The shock for all of my friends in my circle when they heard what had happened. Because I’m a person that’s full of the zest for life, it shocked everyone. The hematologist thought I could have had follicular lymphoma for several years prior. 

[My friends were thinking,] “If Leanne was walking around like that with cancer, who knows what we’ve got?” So a number of my friends all went with different ailments that they’ve been explaining away to get investigated. Even my son, who’s 33, went off and had a full medical as well, because you just never know.

The lesson I learned from that is never let go and advocate for yourself because there’s no other way. The shock that I got, even though I knew for some years I wasn’t right, and then stopped working full time and had started slowing down my career.

[I was] thinking, “I don’t feel right. Don’t know what it is. I just know I can’t keep pushing myself where I used to.”

To have that diagnosis was just a terrible shock. It’s taken me a long time to come to terms with it. 

Importance of mental health 

Moving on to another topic, the mental health side of things, cancer is a mind game. Managing your mind and your emotions through the process is something, again, I’ve never heard other people really talk about. 

If there’s a message I can get across in this story, it’s talking about somebody who was in complete control of her life that had to really take stock. I almost feel like it’s Life that had been tapping me on the shoulder, saying, “Time to change. Time to change.” It took the massive shock to get me to change the way that I lived my life.

What change in your life do you think needed to happen?

I think for decades because of this need to be a high achiever, I pushed myself beyond what most people would do. I guess I’ve done everything the hard way. When you think about being a single mother, a lot of women that are single mothers would take a step back in their career and just think, “Focus on this for now.” 

But I thought I could have it all, and so I wanted to have a beautiful home, live in a way I would have lived if I had been in a marriage, and had the overseas trips. We did fabulous holidays. We had a lovely home. 

Plus, this drive to have a really good career, and so I chose jobs where after I might have been in the job [for] seven years, five years, then I’d move and try to get a new mountain to conquer. 

A number of jobs I was in were non-traditional sectors for women. For example, I worked at the port that’s nearby, so shipping and logistics, and was in an executive role in that, which was so interesting. But again, women in those levels of jobs were not the norm, and so to perform in those, you’ve got to work even harder than the guys around you to be taken credibly. 

Another role, I worked for the state government. I managed the southern half of New South Wales, the state that I live in, for Crown land, and that’s state-owned land. 50% of the state is Crown land, a lot of it’s leased and licensed, and the local government manages that under reserves. It was such a fun job. I loved it, but [it was a] massive load and lots and lots of trouble. 

Pushing yourself too far

[I was] constantly pushing myself, not getting enough sleep, trying to be everyone, everything to everyone, and be there for my kids. It was just burning the candle at both ends. 

I’ll give you an example when I was working where with the travel, if I was a guy, [it would have been different]. If I needed to travel out west to have meetings for several days, a man would have — and I’m generalizing, but I saw my other colleagues who did this. 

They would drive or fly out the day before, go out and have a nice meal and a relaxed stay in a lovely hotel, have a leisurely start to the day, and then begin the meetings. Whereas me, I went home because I’m worried about my kids. They needed me around. 

When they went to bed, I’d be washing school uniforms, making sure the lunches were ready, getting things sorted. I had a very good ex-husband who often used to come and move into my home and carry on the family while I was away. But then I’d get up at like five in the morning and drive up to the airport. 

Then my days were jam-packed with meetings. I might stay overnight somewhere, but then a day later I’d be flying back late in the day, driving the two hours back from Sydney Airport. It was just frantic. 

Time for making changes

No one realized, I don’t think, the personal toll because I never really talked about it. I didn’t want to be seen not to be coping, but also, I was in a very male world, where they all had wives doing all that stuff for them. 

It’s funny. With society, women are applauded when they can do all of these things, but there’s a personal toll. I’ve realized now all those years of pushing myself like that exhausted me and I think created an environment in my body where whatever happened, it was an environment for cancer to get a hold. 

I look back now. I don’t have any regrets because I’ve loved my life, and I’m so satisfied with everything that I’ve done and achieved. But yes, it’s time for a change, big change. That’s why through the beginning of the treatment, I sought out a psychologist to help me.

What helped with the stress of diagnosis and treatment?

When I was first diagnosed, living on the coast, I used to go for lots of swims. I found swimming in the ocean was particularly therapeutic for me and very relaxing. Even just walking along where the waves crash on the sand or around headlands because of the negative ions that are released. 

That was very good. I used to love getting up early in the morning and just sitting outside listening to birds and just having time to just breathe, I suppose. But that was in the early days. 

There were a lot of conversations with girlfriends about how I was feeling, and they completely wrapped around me. It was such a beautiful thing. I used to think to myself, “Gosh, I must have been really lovely to people over the years,” because in my hour of need, everybody just came. It didn’t matter where they lived. 

My phone was ringing constantly, text messages. Then through the whole process, they were there for me in all different ways, dropping things off for me, food or groceries. One girlfriend came round during the time when my hair was falling out and brought lunch. 

It was a pretty distressing time, and she walked into the bathroom and said, “Oh my God, look at the floor in the bathroom.” I said, “Look, there’s no point cleaning it because every time I go in there, more and more clumps of hair fall out. I’ll vacuum it shortly.” And she said, “Oh my God, it’s like carpet in there.” 

For times that were really distressing, it was so lovely to have that. During the treatment, I settled down because I thought finally something’s being done to sort this problem out. 

»MORE: Patients describe dealing with hair loss during cancer treatment

Seeing a psychologist

I also had started meeting with my psychologist. That started in February. So the treatment started on New Year’s Eve, and I met with her over Zoom weekly initially for the first few, and then it went to fortnightly and then three weekly and then monthly. 

Is that my problem or theirs, and is that going to serve me by doing that?

That was a really great sounding board for me because I could talk to her about all sorts of things that I was concerned about, particularly when you’re facing death. I was thinking about what that meant to me and thinking about what my priorities were now and how I wanted to live my life moving forward.

I knew that that person and the way that I was living was not serving me at all. Those behaviors of pushing myself and being full-on active needed to change, and I needed to start looking after me as number one, not everybody else. It was so interesting going through those sessions.

She got me to talk about my life and the dynamics of family and so on. Through that, I discovered why I was pushing myself so hard. I’m the firstborn. There’s a whole range of dynamics in my family, which meant that I really wanted to get recognition. 

By doing these things where I was winning awards and doing all of these fabulous jobs where women normally didn’t work and so on, that was filling my cup and feeding that need. 

Now I realize I’m the only person that needs to approve and give recognition to myself. Really, I don’t need to do any of that anymore. I’ve conquered all those mountains, and I feel quite calm and content now to think that was during my career, but now it’s time for me.

Rethinking relationships with others

The psychologist has helped me really think about how I respond to things. It’s being more wise, using wisdom. Rather than the patterns of reacting to situations with behaviors that I developed over the years, now I’m thinking, “Is that my problem or theirs, and is that going to serve me by doing that?” 

I’m even thinking about friendships and looking at some friendships where I think I had given a lot of energy to people to support them in issues, and now I realize I’ve got to have friendships where it’s a two-way street. 

A lot of friends did step up and really support me. A couple of them didn’t. It’s an interesting thing, and I don’t feel any animosity because people cope with things in different ways. 

Some people, I’ve realized, if they hear the word, “cancer,” they think, “My friend’s going to die. I can’t handle goodbyes and death. I might as well quietly disappear now because it’s all too hard for me.” And it’s a shame that that happens, but that’s life, and we’re all hardwired differently.

What emotions were you feeling?

The follow-up with the hematologist after the first treatment, when I had the terrible Candida, I had to go and have a blood test. Before I saw him and because I had the PICC line in my arm, I thought, “Oh, thank God. All these blood tests now will just use the PICC line.” 

And when I went in to where the nurses took the bloods, they said, “Oh, we don’t touch the PICC line. That’s only for the cancer clinic. We’ll have to stick a needle in your other arm.” 

That was all it took. I was feeling so miserable and unhappy. I sobbed and cried the whole way through and was saying, “I can’t understand why this is happening to me.” There’s a waiting room just outside with people waiting, listening to me carrying on. 

After they took the blood, I walked out and sat there, quietly thinking, “Oh my God, I’m so embarrassed.” That was really a sign of how upset I was and just not coping at all. It wasn’t until probably by the second treatment that I had been through it a couple of times and understood then what I was dealing with. 

Researching and asking questions

I spent hours researching, looking at videos on YouTube, conference papers, reading research papers, anything I could get my hands on to understand what I was dealing with, because I found that the medical profession basically told me information on a need-to-know basis.

I’m a person that I need to understand the big picture and then come into the details. If I don’t have that, then I’m anxious and worried because I can’t deal with ambiguity in that way. 

Each appointment that I had with the hematologist, I had a notebook just like this size, carried it around with me, and every day I would write down the date and what symptoms I was experiencing on that day. 

Then I had another section for questions if I was doing research or questions that I just needed to know based on what was happening to me, and I’d take those into my appointment with the hematologist. 

He after a while started laughing, and he said to me, “Do you have a medical background?” And I said, “No, I don’t, but this is happening to my body, and I need to understand. I’m project managing this because this is my life.” He understood that. 

After a while he would say, “I’ll send you to one of my oncology nurses. She’ll be able to explain a lot of these answers to the questions you’ve got.” But he did deal with a lot of them. 

Giving it a red hot go

It’s almost like a treadmill. They get patients, they bring you in at the beginning, away you go through the process, and then you’re sort of spat out at the end. So I was in the middle of that. 

I felt there was nothing more I could do. Everything that I could do was being done. When the treatment started, I was in that dreadful shared hospital ward, and I was saying to myself, “Surrender to the process and accept.” 

I made a deal with myself. I would never have chosen this for myself, but I’m going to give this a red hot go. That’s an Australian saying. I’m going to give it a red hot go, and it means whatever I can do to make this a success, I’m going to do it. 

So I made sure I walked every day. Hematologists talk about the need to have vitamin D, and I was seeing an acupuncturist on a regular basis. I was taking not only vitamin D, but also magnesium and vitamin B12. Just things that I felt that I could do to keep myself as healthy and help that treatment along.

How cancer affected family

Because I had all of my network supporting me, even though I was alone a lot, I still felt incredibly wrapped around. That really helped as well. But I think I needed a lot of time just to think things through. 

I should just talk about the ripple effect on family as well. At the time when I was diagnosed, I thought this was all happening to me, but cancer just doesn’t happen to the person whose body it is in. It happens to the whole family and network.

I found that my two children were really rocked by the news.

»MORE: Breaking the news of a diagnosis to loved ones

Reflections

Where are you currently with your treatment?

The treatment finished on the 14th of April, and so I’ve had no more treatment since that time. But it’s been a rocky road after that time. Six weeks after the last R-CHOP treatment, you do a PET scan. 

I had a CT scan midway through, and that was heartening because it showed there’d been a 50% reduction in the lymphoma activity, so that was good. At the end of the treatment, I was feeling absolutely wiped out and quite wretched and looked absolutely awful. 

When the PET scan was done at the end of May, I then had a follow-up appointment with my hematologist. That was due to be on the 6th of June, and the day before, his office rang me up and said, “The professor wants to meet with you a week later. He’s decided he wants to take your PET scan results to a multidisciplinary team meeting.” 

I thought, “Why? What are the results showing?” No one would tell me. So I then waited a week, thinking, “Oh my God, what is going on? Why has he got to do this?” Then the day before my allocated appointment, they rang and said, “The professor’s got COVID, but he’ll still meet with you over the phone tomorrow.”

»MORE: Patients describe dealing with scanxiety and waiting for results

Results of PET scan

I woke up that morning with a really sore throat and feeling unwell. I did a RAT test at that point. It was negative, and I thought, “At least I haven’t got COVID.” 

When I spoke to the professor, he said, “I cannot understand the results of the PET scan. I thought that the R-CHOP would have worked, but there’s still activity. There’s inflammation in your abdomen, and we can’t understand why this is.”

I was at home alone on the phone, and I started to cough. He said, “You don’t sound well at all.” I said, “I think I’ve got a bad case of the flu.” He said, “Get yourself off and have a PCR. I think you’ve got COVID.” I was telling him the symptoms. 

When I got off the phone from him, I did another RAT test. Yes, it was positive. Went off and had the PCR, and it was confirmed I had COVID. I’d found out on the day that my PET scan results that looked like my treatment hadn’t worked, I had to isolate for a week, and I was sick with COVID. 

From a perspective of thinking, “Oh my God, I’m dying.” I felt really lousy. That was pretty awful, and no one could come to see me because I had COVID. I had all of that knowledge in my head of the treatment hasn’t worked. I’ve just lost six months of a limited life. What am I going to do now? 

I was ravaged by all of the chemotherapy and the rituximab. That does shocking things to you. The rest of it kills the cancer, but it does shocking things to your body. He said, “We’re going to have to do another surgical biopsy to try and understand what’s going on.” 

Mesenteric inflammation

In July, with all of this going on in my head, I had the biopsy again. They did quite extensive laparoscopic incisions to get lots and lots of samples, and then I had to wait for the results of that. 

When I went to the doctor, I was expecting really bad news. The professor said to me, “There’s no sign of cancer, but it doesn’t mean there’s no cancer in your body. It just means maybe they’ve only got the lymph nodes from your mesenteric that weren’t impacted.”

But they did see lots of scavenger cells, which I thought was unusual, and he did, too, so late on. Anyway, he said, “I want to have another PET scan.” So in August I had a PET scan again, the second one, and then I had a third one in December.

By that stage it had gone to the multidisciplinary team several times, and the results then they now were saying to me, “It appears you have no cancer in your body. We don’t know what that inflammation is, but maybe it was there beforehand. It might be mesenteric inflammation.” 

Meditation

In terms of the meditation, when all of this was happening in July and I was thinking I was dying, the psychologists that I saw said to me, “I think you need intensive support with meditation. I’m not the person to help you with that, but I know somebody who can, and she’s given some of my other clients incredible outcomes.”

So I went along and met this lady, and it’s a type of meditation called Vedic meditation. I used to think meditation [was where] I could just sit quietly and relax. I’d done other meditation over the years, where you might do the creative visualization or look at a light or a candle or something. 

[Vedic meditation] is one where you sit with your back supported, your eyes closed, and you’re given a mantra. You say that in your mind. Nothing else external. This is something I would really encourage others to think about introducing into their life. 

I do that practice two times a day, morning and afternoon, 20 minutes, and I believe it’s a form of energy healing. The feeling that I get doing that is like nothing I’ve ever experienced before. It’s quite magical. 

I go to group meditations with others because I feel that that collective energy is very good. I also have been doing some advanced work around breath work and so on since Christmas. I’m very committed to that. 

There’s a lot of things I have no control over in my life, but there are some practices like that that I’m definitely making sure I include. It’s really helped. 

Final words of advice

I think in terms of words of advice, this is an opportunity to take stock of your life and actually think about what do I want to keep in my life, and what things do I need to let go of? 

There’s an imbalance of some sort, obviously, for this to have happened. It’s a real opportunity to be able to rethink the way you want to take your life to the future and to see and realize a future for yourself that actually can be even better than what you’d experienced. 

Sometimes experiences like this, you need to open your eyes to thinking and behaving in different ways. Really have faith and hope that things will turn out, because I’m a true believer that thought does create.


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Categories
Cervical Cancer Metastatic Patient Stories

Leanne’s Stage 4 Cervical Cancer Story

Leanne’s Stage 4 Cervical Cancer Story

Leanne was a mom of four when she started experiencing irregular periods and fatigue. An examination and biopsy revealed she had cervical cancer.

She went through successful treatment, but scans later found cancer had spread to other spots in her body. She was then diagnosed with stage 4 metastatic cancer.

Leanne discusses processing the diagnoses, going through treatment again, parenting with cancer, and finding support.

Thank you for sharing your story, Leanne!

  • Name: Leanne B.
  • 1st Diagnosis (DX): Cervical cancer
    • 1st Symptoms:
      • Irregular periods
      • Bleeding after sex
      • Pain
      • Fatigue
    • Age at DX:
    • Tests for DX:
      • Biopsy
    • Treatment:
      • Radiotherapy
      • Chemotherapy
      • Brachytherapy
  • 2nd DX: Stage 4 metastatic
    • Age at DX:
    • Symptoms:
      • Growth in lung
    • Tests for DX:
      • Scan
    • Treatment:
      • Chemotherapy
        • Carboplatin
        • Paclitaxel
        • Antibody

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


Introduction to Leanne

I’m Leanne. I’m 37. I live in the UK. I’ve got 4 children, 12, 10, 8 now (his birthday was Sunday), and 5. At the moment, I’m a stay-at-home mom. Going through chemo, as you can see. Before that I was a window cleaner. I cleaned windows. [For] hobbies, I just like walking, health, fitness, healthy eating. I’m a vegan as well.

1st symptoms

Basically, I had a smear test when I was 22, which in the UK is actually under the age limit to have it. It happened by fluke that they did the smear test for me. Then when I’d had it done, they said, “We shouldn’t have had it done. You’re not 25.” 

Everything was clear on that. That was fine, and then I didn’t have one after that. I had my youngest, but I didn’t have my other children. I had 3 more children. 

We got to 2019, and I started having irregular periods, bleeding after sex, and the pain and just not really feeling myself. Tiredness as well. I had severe tiredness. I had four children, but I’d fall asleep in the bath. Real fatigue, really bad. 

In the end, I went to the doctor. She was a very young junior doctor, and I remember the look on her face after she did the examination. She looked at me and said, “I think you need to see someone else.”

At that point, I knew. I just knew what it was. I went in and had a proper examination, and then I had a biopsy done. They said, “Yeah, it’s definitely cancer. We’re going to go ahead.”

They did radiotherapy and chemotherapy and brachytherapy, which was all successful. That was brilliant for cervical cancer. That was fine, and that was brilliant. Then we waited a year. We had a few scans. Everything was still fine. 

 2nd diagnosis

On the year scan, they found a little tiny dot in my lung, barely visible, and they said to wait a few months and see what happened. They waited 5 months, and by that point it had grown by 2 centimeters. 

Then in the time it took to have another scan 2 months later, it spread to a node in my windpipe, and so I was diagnosed stage 4, incurable. At the moment, I’m having chemotherapy for that. Just chemotherapy at the moment. I’ve had 3 rounds, and on Monday I’ve got my scan to see if it’s working.

What was the timeline from symptoms to diagnosis?

The first symptom would have been probably in early 2019. I started to get the pain, the bleeding, the fatigue quite badly. Before that, there was no problem at all. I had 4 children.  

I still felt generally quite healthy, but it was the fatigue that really made me worried. That was sort of early 2019, and now obviously we’re in January 2023. 4 years.

How did you process the diagnosis?

I sort of was kind of expecting it. The younger doctor, when I saw her face, I knew. I like to sort of take things for what they are. When they sort of come to me, I just sort of take them, process them. I was quite calm about it. 

It was more telling other people. That’s what really worried me. Telling my mum and my dad, I thought about how I’d feel if that was my daughter. Friends and people that had lost people. It’s difficult. It brings up memories for them, and it’s just a very difficult process. 

For me, I find that other people’s feelings and emotions are harder for me to cope with than my own, if that makes sense. I’m worried about how they’re coping with things. That was really difficult.

»MORE: Patients share how they processed a cancer diagnosis

How did you tell your loved ones?

Really difficultly, because I just tried to reassure them what I’d been told by the doctor. First off, whenever I’m told something, I like to give people the facts, the information that I’ve been given straight from the doctor. 

Don’t look things up on Google. Don’t look at statistics. Everyone’s journey is going to be different. People watching this and seeing me — and maybe they’ve been diagnosed with cervical cancer — don’t look at me and think, “Oh my God, that’s going to happen to me,” because it doesn’t mean that at all. 

There’s different treatments for different people. There’s different things coming out, immunotherapies and things. When you talk to people, just try to reassure them and remember not to go out and try and look for your own information. Just try and stay positive. Try and piece things together for yourself and not sort of go out looking for information other places.

Current treatment plan

I started my chemo in October, and it was the day before my birthday. I felt fine on my birthday, which was brilliant. 

Then it’s meant to be every 3 weeks, so 3 weeks later I had a blood test for pre-chemo. My neutrophils were low, so they postponed it a week. I had it the week later, and then they postponed it again for the next one by 5 weeks. In that time, I ended up in hospital with neutropenic sepsis. 

I had my third one last Monday, which means my scan can now go ahead. Halfway through, my consultant said he wanted to check my lungs and everything and see what happened. I think it’s going to be a full-body PET-CT to see if it’s spread anywhere else as well.

Drugs in chemo regimen

I know one’s called carboplatin. The one that always gets me is [paclitaxel], I think it’s called. There is also an antibody as well they put in there, but I don’t know the name of that. That’s the 3 combined things I’m having. 

As far as I know, they’re widely used. I’m finding it okay at the moment, really. As you can see, I actually had so long off from the chemo that my hair started growing back, so I’ve got little fluffy bits.

Side effects from chemotherapy

So far, for me, there’s something that wasn’t really described to me — which I’ve talked to other people about, and they said that they have felt it, too — is what I’ve called chemo doom. It does make it sound worse than it is. 

There’s this feeling like you’ve been poisoned, which I suppose is what has happened in a way. But it’s kind of this feeling of impending doom. Especially when you’re not feeling well, and you’re sort of laying in bed on your own. That’s what I struggle with, this feeling of emptiness and loneliness. 

I’m quite a positive, happy person, and I find that really hard. But thankfully it doesn’t last that long. It only lasts a couple of days. You can sort of get through that and move on. 

That feeling of doom. That’s not nice. Everything else I’ve not really struggled with. My hair loss wasn’t too bad. Sickness and all the rashes and diarrhea and things hasn’t been too bad for me thankfully.

»MORE: Cancer patients share their treatment side effects

How do you get out of that feeling of doom?

The chemo I had years ago, I didn’t have any of this. This is quite intense, what I’m having right now, in comparison. When it first happened, I really struggled, and I cried. That was even worse for me, looking at myself, realizing that I was that broken by it. 

So I was scared the next time, but when it came the next time, I just thought to myself, “You got through it last time. It might not be as intense. It might be longer, but whatever happens, it will end, and it will go, and it will stop, and then you’ll feel better again.” 

And it did. Then the last time it happened, and I got through it. Just keep thinking I’ve only got 3 more cycles. As long as my results come back and it’s actually reducing it, I’ve got 3 more cycles left, and we’re good. We’re done.

How have you stayed so positive?

I follow a bit of Buddhist practices. One thing I found really helpful is social media, which I wasn’t big on social media before, but that has been my saving grace. I’ve met so many amazing people. 

I’m getting messages from people all over the world, just sending me messages and saying, “How were you today? How are you getting on? You had chemo the other day. Are you okay? How are you feeling?” People genuinely really wanting to know how I am. 

I try and do that for other people, too. There’s such a beautiful community of people that just really care about each other, and they really want us all to be okay. I want us all to know we’re not alone. You can’t beat that. That has been amazing. Go out there and find people, find your tribe, get with them. That is what everyone should do.

Parenting with cancer

That has been really, really tough. I’ve got 4 children, like I said. They’re all different ages, and they’re all very different people, very different, very individual. They’ve all struggled in their own ways. 

One of my sons, the one that just turned 8, has really been struggling at school. He’s been showing a lot of aggression. The school has been amazing. They’ve been so supportive. My eldest daughter, she’s been very quiet, which has been very worrying. She hasn’t really said much about it. 

I try to be honest and open as much as I can. I try to explain things as thoroughly as I can and answer their questions patiently. Some days it’s really hard, and I don’t really want to talk about it, but you have to help them because they don’t understand. 

It’s really difficult for kids to see things like how adults do. It’s our job as parents, even when we’re going through tough times, to be there for them. That is what we need to do for them. So just be patient with them like you are with yourself, and just work with them, sit with them, chat with them. 

There’s books out there to help. Reach out to other people. There’s people that will help you if you don’t feel you can do it just for yourself. Your schools. Go out and find people to help you because there’s people out there that could do it.

»MORE: Parents describe how they handled cancer with their kids

How did you explain everything to your children?

Like I said, because of the ages, I try to explain to them differently. Obviously, if they’re all together and one of them asked me a question, I’m not going to shoo one of them away because they will understand what they understand from what I say. 

The hardest question, quite obviously, is the obvious one: Are you going to die? Yeah, I am. I’m going to die. Like I said to my son the other day, I could walk out down the road and get hit by a bus. It doesn’t necessarily mean it’s imminent. 

It’s a hard thing to grasp, and it was a difficult thing for me to get my head round. They want to know how I feel during chemo and all the sort of things that everyone else asks me. What’s going to happen to them when I’m gone? 

There’s questions that they’ve asked that have been really, really tough and questions that actually sometimes it’s okay to just say, “I don’t know the answer. I can’t answer you, but I’m here for you. I can hug you, but I can’t give you that answer right now.” There’s been some tough ones. There’ve been tears.

Processing your cancer being “not curable”

That was hard. That was really hard. It wasn’t something that I expected, to be honest, because obviously being positive, I like to hear positive things. My consultant said, “It’s not curable. It’s treatable, but not curable.” 

But in that same breath, he also said that he’s going to try this bout of chemo, and if this doesn’t work, that is it. There is nothing else he can do. That sort of took my breath away a bit, which was really hard. 

I just have to look forward. I take each stage like a little step. I’ve got my scan next Monday. Then I see my consultant. He gives me the results, and from there, whatever he says, we go down that path, and then after that we decide what we’re going to do. 

If it means that there is no more treatment, then I have to try and think of what I’m going to do with that time, however long that is, and make the most of it.

Do you have hope for future research and treatment?

That would be brilliant. That would be amazing. There was actually an immunotherapy that had been only recently trialed, and I was put forward for that, but when my bloods came back, I wasn’t actually suitable for that at the time. 

There might be something that comes up. They might come back to me and say, “We’ve got this new drug or this new tablet, and we want to try it.” Obviously, if there’s nothing else I can try, then yeah, sure. I’m up for trying anything and seeing how that goes. 

There’s so many people going through these things, and in the past couple of weeks I’ve had a few friends come to me saying they’re having biopsies on their breasts, and they’ve had lumps here or things or worries. It just seems to be such a big thing now. 

It’s just so hard to watch so much suffering with this horrible thing that’s happening. It’s really tough, because everyone deals with it so differently. Just because I’m positive about it doesn’t make it [easy]. It’s just such a really hard thing. It’s really hard.

Why is this treatment your only option?

His words were he wouldn’t put me through any more chemo after that. I’m assuming that that is because it is grueling. It’s not nice, and obviously, I couldn’t be on that for life anyway. In all honesty, he didn’t explain it fully. 

He did say that if it had reduced enough, he could try radiotherapy, localized radiotherapy, which could help. He basically said once this load of chemo was done, if it didn’t work, he wouldn’t be able to do anything else.

I’ve had the 3 loads of chemo, so I’m halfway through the chemo treatment. This coming Monday, I have my PET-CT scan. With that, he’ll see if it’s done anything, if it’s reduced, or if it’s spread. Then he will decide from there what we’re going to do.

Advice for caregivers and patients

Don’t give up. Don’t let things get you down. You can have days where you don’t feel right and you feel sad, and there’s nothing wrong with that. You don’t have to be overly positive just to make yourself positive for other people. 

If that’s not your thing and you’re not feeling that way, let it out. Just be however you feel. Let those feelings happen, but don’t give up hope. Also, go and find your tribe. Like I said, go out and find people. 

There’s social media. There’s support groups, physical support groups. There are people out there who can help you that genuinely want to make everyone feel that they’ve got someone. You can talk to someone. 

They can do all sorts [of things] for you. If you’ve got struggles with money, you’ve got struggles with childcare, you’ve got struggles with sorting wigs, or anything you want help with, they’re there to help you. So go and find them, and it will change your whole perspective on what’s happening.

How did you find help and support?

Mine has been online mainly. I had a few other things going on in my life at the time, so I actually recently moved to a new area. I was making new friends anyway, and my kids just started a new school.

Online was my thing. I thought I’d start a little Instagram, so I started my Instagram, which has been really good, and I’ve sort of networked with people, which has been amazing. 

I started a YouTube, where I’ve been sharing my thing on there so people can see what’s happening. I’m getting so much support there. I just went out online and found people there

It’s worldwide as well. There’s people all over the world, and it’s just so lovely to meet new people, see their experiences, and hear so many great stories of success, stories of people that have had. It’s just lovely. It’s amazing.

Just look after yourself. Just to take care of yourself and let yourself be taken care of as well. That’s something I’ve always struggled with, people taking care of me. I like to take care of other people, but sometimes you got to sit back and just let people take care of you and look after you and love you. 

That is a very nourishing thing to do. Just take time for yourself. Let other people take time for you. Just take each day as it comes, but also live in the moment. Go do it. If you think, “I should have phoned that friend I haven’t spoken to for ages,” phone them. 

If you think, “I wish I’d gone on that weekend away,” go on that weekend away. Try and make things happen for you. Do little things all the time to improve your situation and improve your mental health.

Do you live more in the moment now?

Yeah, definitely. I’m being more there with other people and sort of saying what I really think. To be honest with you, it’s kind of made me really find who I am. I was always very confident, but I’m much more confident in my person and my personality. 

It’s really affirmed what I believe and how I feel, my moral compass. It’s changed my life in a good way. Cancer changed my life in a good way.


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The Latest in Genetic Testing in 2023

The Latest in Genetic Testing in 2023

Featuring Sue Friedman and Abigail Johnston

Genetic testing can help people understand their risk for cancer, help them make medical decisions and detect cancer early. For those already diagnosed with cancer, genetic testing can play an important role in finding the best treatment options.

Abigail Johnston is a cancer patient advocate living with stage 4 metastatic breast cancer. Abigail has the ATM gene mutation, which carries an increased risk for breast cancer.

Sue Friedman is the founder and executive director of FORCE, Facing Our Risk of Cancer Empowered. Sue founded FORCE after being diagnosed with breast cancer and testing positive for the BRCA2 mutation.

They both attended the San Antonio Breast Cancer Symposium (SABCS) which provides the latest information in research, prevention, diagnosis, and treatment of breast cancer.

In this conversation, they break down what genetic testing is, the different types of genetic tests, what it could mean for you and your family and how to interpret the test results.

Brought to you in partnership with Project Life.

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


Introduction to genetic mutations

Abigail J.: One of the most important things to know when you get a cancer diagnosis is how you’re going to be treated. Learning about your cancer [and] learning about the things that make your cancer unique helps the doctors make the best decisions in order to give you the best medicine that is specifically targeted to the cancer that’s in your body. 

We’re learning a whole lot more. Doctors are learning things all the time about different biomarkers, mutations that they can target, [and] things within your body that respond differently, from one person to another. There are things that can be understood about different patients as groups. 

One of those things are hereditary or germline mutations. These are mutations that come in your DNA. You get one-half of your DNA from your mom, one-half from your dad. Sometimes mutations can be passed down in families. 

At a time of a cancer diagnosis, a lot of times that’s the only time that a family will suddenly find out that there are these sneaky little things going on in their bodies that they have no control over that mean they’re more predisposed to a cancer diagnosis, to diabetes, to heart disease, [or] to all kinds of different things. 

Understanding those mutations in your DNA not only helps the doctors know what medications to pick, but then you can also do family planning. You can inform your families. There’s all kinds of really important things about knowing what is in your DNA. 

Sue, why did you found FORCE?

Abigail J.: I’m super excited to have Sue Friedman here with us today, who is with FORCE, which stands for Facing Our Risk of Cancer Empowered, an organization all about making sure people understand what’s in their DNA and then know what to do with it. Sue, would you tell us why you founded FORCE? Where did it come from?

Sue F.: I was diagnosed out of the blue at age 33 with breast cancer, and I was very proactive with my health. I didn’t have a family history of breast cancer. It wasn’t until after I was diagnosed and actually after I had my initial treatment that I was reading a magazine article about hereditary cancers and about genetic testing for BRCA1 and 2. This was really many years ago, so kind of in the early days of precision medicine. 

In this magazine article, they were talking about BRCA1 and 2 testing and how certain people are more likely to have an inherited mutation that can predispose them to cancer. I’m reading through these red flags, and one of them was young-onset breast cancer. I’m like, “Okay, that’s me. 33 with breast cancer.” 

Then it was talking about a link between other cancers, like ovarian cancer. My paternal grandmother on my father’s side had some kind of abdominal cancer. They said it could be passed on from either side of the family, like you said. Nobody had ever asked me really about my father’s side of the family in medical intake forms. 

All of those things together, and then they were talking about how people of certain ethnicities or groups are more likely to have a mutation, and that included Ashkenazi Jewish people. I was like, “Okay, I’m 3 for 3 here.” But my healthcare team never told me that.

I’m reading [it] in a magazine article, and I said to them, “I want this test.” They were like, “Sure, give us your arm. We’ll pull the blood. We’ll send it in.” Well, they never actually sent it in.

Abigail J.: Wait a minute. They never sent the blood in?

Sue F.: They never sent the blood in. I know.

Abigail J.: Wow.

Sue F.: There was no genetic counseling, and again, this was the early days of genetic testing. I also ended up having a recurrence soon after that. I ended up at a cancer center for a second opinion, and I told them, “I want this test.” They’re like, “Okay, you have to have genetic counseling.”

The idea was, though, to give a voice to a community that didn’t feel they had one. 

Sue F.

I was halfway through chemotherapy when I found out I had a BRCA2 mutation. Suddenly, I had to make other decisions, too.

Sue and family on Halloween of 1997, shortly after starting treatment.

I had had a unilateral mastectomy for treatment, and suddenly I learned my other breast was at really high risk. I didn’t want to go through chemo and treatment again. 

Then they were talking about my ovarian cancer risk. I didn’t think I was done with having children, but I felt like I didn’t want to go through another diagnosis. I had to make these really tough decisions, like do I end my fertility? Take my ovaries out? There really weren’t resources about that.

Abigail J.: Was your medical team helpful in making those decisions?

Sue F.: They were, but because this was such early days in genetic testing, it was a new test. They didn’t have a lot of long-term outcomes, so they’d say, “Well, we think this will lower your risk for ovarian cancer,” which makes sense. “We think removing your other breast is a good idea, but we don’t know. We don’t have long-term outcomes yet.” 

I had to kind of make those decisions in a vacuum, at least an evidence vacuum. There were a lot of other people who I met who had breast cancer, and there were support services and support groups, but most of them weren’t making those decisions with regard to genetic testing and what to do with that risk.

I really felt the need. It was out of my own need that I started FORCE. I started as a lark. I didn’t even have a computer when I was diagnosed. Soon after treatment, I did take out my ovaries. I was newly postmenopausal at 35, so I spent a lot of nights awake with insomnia. 

I’d be on these message boards, talking to other survivors. I started meeting these other people with mutations. Some of them didn’t have cancer, and some of them did, and they really had nowhere to go. That’s kind of why I started FORCE 24 years ago, to give us all a place to go.

Abigail J.: And 24 years.

Sue F.: 24 years. It just grew, and there was such a need. About 5 years into running FORCE, I actually made the very difficult decision to give up my veterinary career to do it full-time because there were a lot of great vets out there, but there was really only one organization providing resources specifically for that community.

Creating the term “previvor”

Abigail J.: I think I read recently that FORCE was behind the term “previvor.” 

Sue F.: We were. One of the members of our community — and she actually happened to be a member of our board of directors — said, “I need a label. What am I? I don’t have cancer, but I know cancer. I lost my mom to cancer at a young age. I’ve lost my breasts to cancer risk. I lost my ovaries to cancer risk, but I don’t have cancer.” She said, “I’m not one for labels, but I need a label for this.” 

What I realized then, too, was that there was this whole group of stakeholders that weren’t part of the conversation. Before I started FORCE, I’d go to support groups. I’d see some of these previvors go, and they were apologetic, like, “I know I don’t belong here. I’m sorry, I don’t have cancer.”

They were always apologizing, and sometimes they weren’t welcomed as stakeholders. 

It was really for that population that FORCE became a real home. We kind of did a search of terms, and we came up with previvor for “survivor of a predisposition to cancer.” Not everybody loves the term, which is fine. The idea was, though, to give a voice to a community that didn’t feel they had one. 

In that regard, whether people love it or we hear people say, “I don’t like the term; stop using the term.” We’re very open to other terms, but it did provide a community and a label for some people who really wanted more.

Breast cancer and hereditary cases

Abigail J.: When you look at the people who have been diagnosed with breast cancer, is hereditary breast cancer something that makes up a lot of the reason for a diagnosis, or is that a small percentage still?

Sue F.: It’s about 10% roughly. Many people don’t know that they have a mutation, but it can affect treatment decisions, it can affect prevention options, and it can affect your family members. It’s not just breast cancer; it’s other cancers as well. Knowing that information can be really important to medical decision-making. 

It’s not like it’s the majority of people with cancer, but when you look across the spectrum of people who have been diagnosed with breast cancer and other cancers, these are often families that have a disproportionate cancer burden.

There are relatives. There’s siblings. There’s parents. There are children and cousins. The burden within some of these families is really, really high.

Abigail J.: Sure, because once you find one incident of hereditary cancer, everybody starts getting tested. In my particular family, when I was diagnosed with ATM — it’s not BRCA. It’s a different, lower, moderate risk for breast cancer. 

I’m 1 of 6. One of my sisters is positive. My mother, my uncle, [and] several of my cousins. We’re pretty sure my grandfather was, but he’s since passed away. That’s only on my mom’s side of the family. That information, I think, is helpful. 

Abigail with her mother, who also had breast cancer.

Reactions to finding out it’s hereditary

Abigail J.: When people find out that their cancer was probably caused by their genes, they have no control over that. Do you find that helps people realize it’s not their fault?

Sue F.: It’s a mixed bag. I know for me it was a little bit of an a-ha, but not everybody gets that answer. Not every 33-year-old with breast cancer gets that. For them, they don’t get that, being able to know. Also, there can be a layer of guilt. There can be a layer of family dynamics. Sometimes the family dynamics that were already at play get heightened because of it. 

Abigail during treatment for breast cancer.

It’s definitely a mixed bag. You’re not just at risk for one type of cancer, but it’s multiple cancers. It’s not always a relief. At the end of the day, people who are born with mutations always had the mutation. If they get to know it, at least they have a little bit of a chance of doing something potentially proactive about it.

Genetic testing

Abigail J.: Let’s just talk about how you find out you have a genetic mutation. You mentioned genetic counselors. I know there’s a couple of people that are typically involved when you want to find out if you have a genetic predisposition for cancer. I assume a doctor has to order a test.

Sue F.: Yes, that’s true.

Abigail J.: And then what happens?

Sue F.: There are a lot of different entrées into finding out that information. One thing we’re seeing more and more of is that people who are diagnosed with cancer — and especially if they’re diagnosed with, in the breast cancer realm, metastatic breast cancer — they may get tumor testing, and the tumor testing may suggest that there’s a mutation. We see that with prostate cancer as well. 

That’s one way to [get to], “I may have an inherited mutation, and I should get genetic testing.” We recommend people talk to an expert in genetics because ordering the test is complicated. It’s not just one test anymore. As you were talking about, it’s not just BRCA1 and 2 anymore. 

There’s at least 20-plus genes that have all been identified and associated with breast cancer, and then other genes associated with colorectal cancer. They now do panel testing. Being able to order the right test and appropriately interpret the results, you want some expertise. 

Sue and family in 1999 after founding FORCE.

Abigail J.: Is that a geneticist? Are you seeing a geneticist? 

Sue F.: Or a genetic counselor. But also, there are oncologists who are highly trained in genetics. There are genetic nurses now. Really, there’s been an expansion of the amount of people who are able to provide that information up front, and then after someone gets a test result, also telling them what it means for themselves, what it means for their family, [and] who else in their family should now get that information. 

The other thing — and this is the group we worry about — is there may be people who test negative, but there may be something still going on in that family. There may be clinical trials that they can join to look for other additional genes, or there may be further testing that would be appropriate for them. We want to make sure that just because someone gets a negative test doesn’t mean that they’re not seeing a genetics expert after that test result as well.

Direct-to-consumer genetic testing

Abigail J.: I know there’s been a whole lot of different genetic-type things in the news: genealogy things, 23andMe.

Sue F.: Yes. That’s the other thing I was going to mention.

Abigail J.: There’s other direct-to-consumer [tests]. Are those as reliable or as helpful as a test that is ordered by a doctor?

Sue F.: The short answer to that is no. Some of the tests, so like the 23andMe test, look for some of the more common mutations found in people of Ashkenazi Jewish descent there.

They, I think, are now reporting out some colorectal cancer mutations. 

They’re testing just a small amount even in BRCA1 and 2. They’re not looking for these other genes, like ATM, PALB2, chek2, and these other genes that can have mutations. It’s not the same. 

Even when the FDA said to 23andMe, “You can report the results of these tests to people,” it came with the caveat that if you do have testing that way, you should follow up with what they would call a “medical-grade test.” That would be from a lab. That is a doctor-ordered test.

Variant of unknown significance

Abigail J.: Sometimes when you have genetic testing, you see on the report a VUS, which is “variant of unknown significance.” What do you do with that?

Sue F.: Again, this is one of the reasons why we tell people, “Go see a genetics expert.” Unfortunately, we’ve seen healthcare professionals who didn’t have training in genetics report those as mutations to people.

A variant of uncertain or unknown significance, or VUS, is a frustrating result because genetic testing most of the time — especially for BRCA1 and 2, some of these newer genes a little less so — will be a, “Yes, you have a mutation,” or, “No, you don’t.” 

Once in a while, you get this inconclusive test result. We haven’t tested enough people. We don’t know. It could be a gene change that’s the difference between two functioning genes, but they function just a little differently, but they still work, versus you have a mutation [that’s] causing cancer. 

There’s really a need for expertise in those situations, because then from there, the best recommendations they make are based on your family history and your personal medical history. You really need someone who has that expertise and training to look at that and see which cancers are related. 

There could be other testing for relatives that’s usually done as research to see if that VUS, or variant of uncertain significance, is tracking with the cancer in the family.

If everybody who’s had cancer in the family also has that same VUS, then that may be a little bit more evidence that this may be what they would call a pathogenic variant or one that’s cancer-causing. 

There have been some research studies trying to classify variants, too. There’s a lot of researchers trying to figure out this frustrating problem. The US results are more common in some of these newer genes that have been newly discovered that they haven’t done as much testing on in some of these panels.

Genetics don’t guarantee you will get cancer

Abigail J.: Important to have an expert in your corner to help explain, even when you’re thinking about a test. Should you get the test? How do you interpret the test? Then you have the test, and it says there’s some genetic mutation. You have some predisposition towards cancer. That doesn’t mean that you’re going to get that cancer, right?

Sue F.: It doesn’t, but your risk may be very high, and it’s really important. The other thing that expanded panel testing has done for us is found all these genes, and they all have different risks. 

It used to be that even BRCA1 and 2 were kind of lumped together, but the risks are a little different for the different cancers. BRCA1, you’re more likely to have ovarian cancer than BRCA2. BRCA2, you’re a little more likely to get pancreatic cancer than BRCA1. 

Sue during treatment in the late ’90s.

They all are different, and the same is true for some of these other genes, like PALB2 and ATM. Fortunately, there are some guideline panels that look through the evidence every year and update those guidelines based on the gene.

It’s really important, too — and this is another reason to see an expert — to make sure that they recognize the gene you have may be different than BRCA1 or 2 and that they may come with a different set of guidelines and recommendations.

 

Resources provided by FORCE

Abigail J.: If there’s a person who is considering genetic testing, has had genetic testing, or has something that’s going on in the family, what can FORCE do for that particular person?

Sue F.: It depends on their circumstance. We have over 300 volunteers with different genes. Some have had cancer, and some have not. We match people by gene mutation, by their cancer diagnosis, their stage, their age if we can, and then geographically. 

We really try and match people as best as we can to someone who’s had a similar situation so that they can talk to a peer who’s been through it. Then we connect them to personalized guidelines and information and even now clinical trials.

We have clinical trials that are embedded to our website based on the gene that someone has, because now there are clinical trials that are open to people with PALB2 or ATM. 

To bring up a different topic, but [there are] people who don’t have inherited mutations but have acquired or somatic mutations that they found from tumor testing or from some of the biomarker testing looking at tumors. 

We know that matching people to these types of specific clinical trials, they’re really looking for that needle in the haystack person, that subgroup of the larger group. It’s important to us to try and match people to clinical trials that they may be really uniquely suited to [in order to] actually fill enrollment and get those answers for themselves and future generations. 

There’s a lot as far as the personalized information, the clinical trials, the support, the resources, [and] paying for care that we try and do and match according to someone’s situation, including their mutation.

Sue and Dan at the welcome reception.

Abigail J.: It’s such a labor of love to be able to give people that information.

Sue F.: Gratifying, too. It really is incredible — and I’m sure you know this — to be able to meet someone who is facing a challenge and be able to provide them with resources that can help them. What’s better than that?

Abigail J.: Absolutely. Thank you for being here today.

Sue F.: Thank you for inviting me.


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Categories
Caregivers Spouse

Joe’s Acute Lymphoblastic Leukemia Caregiver Story

Joe’s Acute Lymphoblastic Leukemia Caregiver Story

When Joe’s wife, Anna, was diagnosed with acute lymphoblastic leukemia (ALL), he became her primary caregiver.

Joe recounts how he met Anna, her initial symptoms, the chemotherapy regimen she underwent, and how they thought she developed a secondary cancer.

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You’ve got to take care of yourself to take care of your patient. You’ve got to. You’re not infinite. You’re not just a well of giving.

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


Pre-Diagnosis

How did you meet Anna?

Anna’s from Budapest, so she was living there at the time that we met, and we were working for the same company. We were working for an international tech company. 

I had just started the job. Actually, I was based in Los Angeles, but I think I was staying in New York at the time. I had just taken the job, and my first project was actually in LA and San Francisco, and she was a project manager, [or] account manager, and had to book me plane tickets. 

We started emailing, and I was very taken with her Google photo, a tiny little circle, and I could see her bright eyes and her smile. I remember thinking to myself, “There’s a person at this company I hope that I get a chance to work with.” 

We, oddly enough, started communicating (because we were binational) on LinkedIn and started flirting very heavily on LinkedIn of all places. That was our dating site. We did that for, gosh, like three or four months, where we were back and forth on LinkedIn, messaging every day.

So we met in LA for the first time. We spent a week together, and that was it. That’s all we needed.

Overcoming challenges together

It’s been kind of challenge after challenge, and I feel that we’ve been able to get over each one. At first it was, obviously, we were thousands of miles apart. Nine-hour time difference. 

Then suddenly it was the pandemic, and we were both quarantined for almost a year before we were able to really talk about seeing each other again. Then it was citizenship paperwork and getting the right stuff in place for her to come over and us to start our life. 

We got married last summer, and then it was five months of wedded bliss before her diagnosis. For a couple that’s relatively young and has been largely displaced for a good chunk of our relationship, we’ve proven our hearts to each other, especially through this last ordeal. [We’re] still going strong.

Anna’s 1st Symptoms

For us, it all happened so fast. Anna got COVID in October of 2021. Nothing serious, and she seemed to recover. We vacationed in Florida in November. In mid-December, I had a little bit of a work/social trip to Chicago. She came with, and we kind of parlayed it into a little bit of a mini vacay before the holidays. 

In between November and December, she’d been really displaying symptoms of some fatigue. The only thing I could call it is kind of breathlessness. As a runner, she’s probably one of the fittest, healthiest people that I know. Suddenly, we would go on kind of one of our long walks or whatever, and she would start to get winded pretty quick. 

For the duration of that, we really were kind of excusing it by, “Maybe it’s long COVID, or maybe it’s just ongoing symptoms from the COVID.” It was really easy to do that. 

We were in Chicago for a week then in mid-December, and toward the end, she was really starting to have a lot of flu-like symptoms. We were walking around a museum, and she got very warm, very sweaty. It was kind of our last night there before we came back to Colorado.

She had a really heavy menstruation, which for female patients that have [periods], that’s something to look out for, for sure. That’s like a big, big indicator of your blood counts being kind of out of whack. 

We at first, again, didn’t necessarily think anything of it. We flew home. It was a week between the time we got home and when we went to urgent care, and during that week, things got increasingly worse. 

Escalation of symptoms

I think with the acute blood cancers, with acute leukemia, that’s the deal. You can go from a kind of dismissible, less than 10% blast count in your bone marrow to 75% in like two, three weeks. 

So in that week, it was like all of a sudden she was out of breath when she walked up the stairs. She was out of breath after she washed her hair in the shower. 

If there’s one big indicator, she started to develop all these mystery bruises all over her legs and torso.

We got into the kind of WebMD black hole, and they tell you it’s usually not the worst-case scenario, and I’m looking at leukemia like that’s the worst-case scenario. When the bruising happened, it sort of started to become undeniable. We have to get this checked out. 

She was even starting to develop a little bit of the petechiae, the little red dots around a bruise, like lining a bruise. That’s another thing to look out for, or some of the gum line perhaps. We didn’t want to be alarmists, but we were like, “Maybe you’re severely anemic. I don’t know.” 

At the end of that week — it was a Sunday — we went to urgent care because we just wanted an answer. It didn’t get super alarming until that last week, and [in] five days we went from zero to, “Holy crap.”

What went through your mind when you found out it could be leukemia?

That’s why I think the concept of early detection is so important to preach and also so important for all of us to accept, because nobody wants this to be the conclusion. We certainly didn’t. I certainly didn’t. 

Hindsight, I look back, and I think in my gut I knew. We’re on WebMD, and I’m seeing like, “Okay, at one end of the spectrum, she could be anemic. At the other end of the spectrum, it could be leukemia.” I think in my gut, I was like, “This is bad.” 

But I think at the time, the denial, self-preservation, survival, your brain is looking for — I mean, your survival brain. I think the lizard brain, that small voice at the back is going, “This is going to be bad.” 

But the reason brain, the human brain, this evolved brain is like, “Nope, it’s going to be fine. It’s all good.” I think there’s a lot of conflict there while you’re in it. 

Probably there was a lot of underlying anxiety, certainly some sleeplessness, and just some dread. I think that I was still trying to talk myself into believing that it was all going to be fine.

Anna’s Diagnosis

Heading to the hospital

Again, the timeline for us was so compressed because we went to urgent care on a Sunday, and then by Sunday night, we knew pretty much what the deal was. Thank God for the medical teams that were in place. 

We were very lucky. There were some personnel, whether doctors or nurses, in place who kind of took a look at her symptoms and knew to ask for not just the basic blood panel, but a white blood cell count. 

It was a Sunday night, so it got sent over to the labs and then to the ER, and there was no guarantee that there would have been someone there to read the results. Luckily, there was a lead doc in the ER where we lived who got the labs, called Anna about 9 p.m. Sunday night, and said, “This is not good.” 

They told her, “Bring your husband, pack a bag, and don’t take more than an hour because we got to get [going].” It was very quick. At that point, we get that call from the doctor, and we still don’t know exactly [what it is]. So we drive to the hospital [in] middle of the night, clutching hands, freaked out. Of course, I’m still trying to comfort her. 

I don’t want to lose the memory or what we’ve learned of any of this, but if I could kind of scrub one clean, I think that first night would be the one I would say, “Can you just nip that out of my brain and toss it in the trash?” 

Unofficial diagnosis

I remember her trying to take a shower and put stuff in a duffel bag for us to drive to the ER, and her just shaking and so afraid of not knowing what we were going to hear. 

We drove to the hospital. They took her into the ER first to kind of see what was going on. Then they called me in. They had told her there’s about an 80% [or] 90% chance that this is leukemia, that this is cancer. They told us right there that that was the greatest likelihood. 

I know that she doesn’t have a very clear memory of it. It’s very foggy for her. I probably also have a very foggy memory. I know there was a lot of time. She didn’t board the flight and I didn’t leave the hospital until like probably 2 in the morning, and I know that we went there about 9:30 or 10. I don’t remember it being three hours or so, but I remember snippets of it.

She has no family history. We had no reason even going into the onset of symptoms that this would be the outcome. I think it was just like absolutely 100% shock at first. We were both in shock. 

I remember that she called her mother in Budapest to tell her. I remember I called my folks, and I remember Anna [said], “If you want to get out, now would be the time.” And I was, of course, like, “That’s ridiculous.” 

Being transferred to Denver

The ER doctor was incredibly reassuring, and we got very lucky because of Anna’s oncologist’s association with this hospital, even though he’s headquartered in Denver.

We were very lucky that they had a bed up here where we are at the Colorado Blood Cancer Institute. Again, we got very lucky, looking back. 

They kind of gave us the rundown. It all happened very fast. At the time, this was all happening down in Durango, Colorado, which is about six hours down in the southwest corner. They called Denver, they arranged for the bed, and they arranged for a med flight. 

Unfortunately, they encouraged me not to fly up with the med flight because there were still COVID stipulations in place, and we didn’t know if I would be allowed into the hospital once we got there.

Processing the likely diagnosis

We decided that I was going to go back to our house, pack a bunch of stuff, and then drive up to Denver first thing in the morning.

I kissed her goodbye when the paramedics came in to load her up into the ambulance to take her to the airport. 

I do remember walking out of the ER, getting into the car, driving back to our house, and crying. I’m angry.

You’re in a fit of rage because you’re like, “This is unfair,” and I’m kind of lamenting that. I have a distinct memory of driving and crying, and I’m mad at the universe. 

And then all of a sudden I just stopped crying, and I was like, “I can be angry, but there’s nobody to be angry to.”

Her having this or not having this is not an argument that I’m having with anyone. Is it unfair? Sure. Yeah, absolutely. It’s all unfair. 

This diagnosis is unfair for everyone, and I’m not saying that doesn’t matter. Everybody has to go through that. Every patient and all of the people who are supporting the patient have to go through that anger and resentment and fury, the why. But the why, why, why? There’s not an answer, and there’s nobody to appeal to. 

I went back to our house, and I packed our bags.

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Official diagnosis

Anna and I were together at the hospital there, and we got the diagnosis from the oncologist, which was the next day. 

He came in and said, “We know it’s leukemia, and we know it’s acute lymphoblastic leukemia. We know it’s B-cell acute lymphoblastic leukemia, Ph-negative. We know exactly what it is, and we know exactly how to fight it. Here’s the treatment protocol.” 

Once you accept the diagnosis, then it’s just a matter of kind of the logistics of reckoning with everything else. I have also said that a situation like this, when it’s life or death or cancer, everything’s sort of easy because all the questions are gone. 

It’s just a matter of like, well, we have to do whatever we have to do to treat her, to fix this. Everything else kind of falls in line after that. It’s just a matter of how we do it, what we do, or when we do it. 

Role as a Caregiver

How did you process your emotions?

I think I probably still am. I think I’m just starting to process stuff in a productive way now. It was shocking. I also think we were a little bit lucky that our diagnostic timeline was so short. 

We did have to do a lot of stuff very suddenly. We had to move overnight, we had to figure out job stuff, and we had to do everything overnight. There wasn’t time to dwell on anything. There was only time to act. 

The trauma often doesn’t happen while the traumatic experience is taking place. Trauma is a byproduct. It often happens after.

Even her oncologist said, “You could go get a second opinion, but I don’t think you have time.” She was about a week or two away from a stroke. He was like, “I think we should do chemo, and it’s going to take three years.” 

There was one moment where Anna was like, “I can’t do this for three years,” and I was like, “Well, we have to. There’s no alternative right now.” We ultimately just had to do [it], so I think we both clicked into a survival mode immediately. 

Processing after treatment

Just given the structure of her treatment protocol, it gave us a lot of milestones to hit and a lot of goals to work toward. She was in the hospital for 30 days while they tried try to induce remission. We knew that from day 1 to day 30, our goal was for her to be in remission by day 30. 

So we had that and then it was just a matter of getting through each course [or] each phase of treatment. It put us in a state of fight or flight for nine months. 

What I’ve said not only about my experience, but what my wife agrees about her experience is that the reality is that the trauma often doesn’t happen while the traumatic experience is taking place. Trauma is a byproduct. It often happens after. 

It’s very complex because by the time the experience is over, the people around you are ready for you to be better. But that’s often where the quality of your mental health or emotionally you might be at your worst because you’ve only just started processing.

Being a caregiver during Anna’s treatment

Her treatment protocol kind of varied. Overall, this particular protocol is one of the most intense, but course to course, it kind of varied in intensity. So she had some courses where she was doing okay, and then she had some courses where she was barely conscious. 

The amount of care I was giving was regulated based on that. Regardless, there was a lot to do because if she wasn’t in the hospital, we were at clinic like 3 to 5 days a week. There was a lot of logistics. 

Stocking the kitchen with the right foods, making sure that we had stuff that made her comfortable, fixing meals, getting her to the bathroom or whatever, getting her showered if need be. And then we were driving up to the clinic or the hospital for every appointment. 

I think I sort of thrive in periods and stretches where I have to satisfy logistical demands. So I think in a weird way, I was sort of at my best when the demand was high. I think that even though I was conscious of the fact that I needed to look out for my mental health, I didn’t put a lot of energy into it until much later. 

Taking care of your own mental health

If I were going to tell new caregivers or caregivers just coming out of a loved one’s diagnosis, I would say get into that very early, and don’t rely on one method. I think I sought out a therapist maybe, and I went to a couple of sessions of therapy. It felt a little like putting a Band-Aid on an open wound. 

I was like, “Well, this feels like a waste of time,” and then I just didn’t do it then for the bulk of the year. It wasn’t actually until Anna started to get better [that I went back].

We weren’t really out of the jungle until maybe November when her current treatment option was introduced to us as a way forward. 

It has been since then that I’ve really noticed and maybe since a little bit earlier that I’ve really noticed the challenges of my mental health. It has kind of spurred me into action for my own sake. 

I sought out not only therapy, but maybe psychiatry and a little medication, a little bit of self-care, and a little bit of peer-to-peer, making sure that I’m part of talking to other caregivers [and] making sure that I’m accessing any resources that I have available, of which there are many. 

The other thing I would encourage caregivers to do. Don’t count on one path for mental or emotional wellness. 

You might need a variety [or] a combination of those things to really keep your self functioning. It may not just be talk therapy, and certainly don’t rely just on medication. 

Connecting with other caregivers

Talking to other caregivers or hearing other caregivers’ stories and the cancer community at large. A lot of connections that we made online, a lot of connections we’ve made in the Denver metropolitan area, a lot of international connections that my wife has made, thankfully, through social media. 

We talk a lot about social media being the bane of our existence, but Instagram literally kept my wife plugged into the world while she was trapped in a hospital bed. I wish we would have leaned into it sooner. 

I think there’s a reluctance to do that, too, because it’s like an admission of the people don’t want to be reminded that they’re [in the cancer community]. Everybody says, “The cancer community is the best club you never wanted to be a part of.” 

But once you kind of give yourself over to it and you’re like, “Oh, there’s amazing people here who are ready to care for you and support and help and offer guidance,” that kind of changes the outlook a little bit.

Caregiver Identity

Advocacy for caregivers

Anna and I are both trying to move into a stage where we’re giving back to the community, doing a lot of fundraising. She’s trying to do a lot of awareness. We’re trying to preach the early detection. 

I’m trying to do a little advocacy for caregivers. There’s a lot of good stuff going on for caregivers, but the role of caregiver [is] really complicated. I think it’s for a couple of different reasons.

Caregiver not taking care of their own needs

I think an inability to or a reluctance to recognize and identify personal needs, to make an attempt, [and] put in the effort to satisfy those needs is inherent to caregiving in those scenarios. 

When it’s a loved one that has a diagnosis that’s as serious as cancer, our human instinct — maybe not instinct, but our human response — our socialized response is to say, “What do my needs matter when my loved one has cancer?” 

The problem with that is — and it’s understandable — it seems to be on the surface evidence of compassion and evidence of recognition of the other situation. But simultaneous to that, it’s also incredibly unhealthy to go into a situation like that denying your own personal needs.

If you’re not good, how are you going to take good care of your loved one? Also, it’s just a denial of personal needs.

Mental health issues for the caregiver

This is something I think we probably don’t talk about often enough, but I think it’s very interesting, and it is starting to come up. I was on a great webinar that Leukemia and Lymphoma Society put together.

On the webinar, we talked a lot about how if you’re in the trajectory of a diagnosis or the cancer journey and if you’re lucky enough to avoid bereavement, oftentimes it’s in the stage when the patient’s in survivorship that there’s the biggest spike of depression, anxiety, suicidal ideation, and serious degrade in mental health among caregivers. [It’s] when the patient’s getting better. 

Anna and I talk about it all the time that as she’s gotten better, we’re a little bit like ships passing in the night because not only is she kind of forged with this new identity as a survivor, but she’s also getting what she lost back. She’s getting her health back. She’s slowly building back up. 

Creating an identity as a caregiver

For the caregiver, this role that you have sort of adopted has become your identity, because in this particular instance, caregiving kind of involves helping to keep someone alive. 

Within that pursuit, I think there’s also a lot of conflict because in the context of the hospital, the clinic, among the care team, or in the presence of the oncologist, you sort of are aware of the fact that you’re useless.

There’s literally nothing you can do. I think there’s a lot of conflict there. You had this identity that you’ve sort of adopted in order to keep your loved one going alive