Jonathan’s Stage 4 DLBCL Story

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

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In terms of hobbies, I like reading. I like traveling. I’ve been to over 35 countries, and I used to enjoy working out. I’m doing less of that than I was, but I hope to get back to it.

I grew up in South Florida, actually, and came to New York a little over 20 years ago for work purposes. In fact, I lived in New York City for 15 years, beginning about a month before 9/11, so it was kind of a cruel introduction to New York City.

How would you describe your DLBCL story?

I guess I’d say it’s been full of twists and turns and one hurdle to jump over after another. It hasn’t ended yet, so I’m still in the middle of it. 

It’s about sort of keeping a positive attitude and dealing with each thing as it comes, and the idea that you really don’t know what road this is going to take when it starts. 

I thought that I had a pretty preordained notion of what this was going to be when I first got diagnosed, and it’s been nothing like that. 

So just keeping a flexible mind and an open mind and taking things maybe not one day at a time, but one week at a time.

1st DLBCL cancer symptoms

I felt severe pain in my shoulder. It was excruciating, and after about three or four days, I made an appointment with an orthopedic surgeon, an orthopod, to look at it. 

He took an X-ray, and he diagnosed rotator cuff tendinitis and prescribed a steroid and physical therapy. I took the steroid, and it flared the pain down, as steroids tend to do, and it enabled me to go on vacation for a week. 

I came back, and a little while later, I started the physical therapy. I noticed a lump under my armpit, a modest-sized lump, but I didn’t think that much of it. Then I went to physical therapy.

About the third session, I was doing an exercise where I had my armpits sort of showing to the physical therapist. She felt it and said, “What’s this?” 

I said, “I don’t know. It’s been there for a little while.” 

She said, “You better get it checked out.” And so I made an appointment for three weeks later with my general practitioner, my primary care doctor. 

I thought about it, and I said maybe three weeks is too late. I called back and got an appointment the next day, and she checked it out.

Why did you decide to get an appointment earlier?

I think I said, “I believe this could be something serious. I don’t know if it’s something serious, but I’d like to get it checked out sooner rather than later, and it’s getting bigger.”

Any guidance for what would have helped before the tests and biopsies?

I would’ve wanted to know a little bit more about the potential diagnoses. I guess what the point of each scan was while we were doing it. I think that’s really it. I had a fair bit of information.

Did you experience claustrophobia from any of the scans?

I didn’t experience any claustrophobia from the MRI. I know a lot of people do. If you do, make sure you have good earplugs [or] that they’ve given you good earplugs so it’s not as loud, which just adds commotion to the claustrophobia. 

Know that it’s only going to be 25-30 minutes and that it does end. You’ll get through it.

DLBCL Diagnosis

How did you process the diagnosis?

I don’t think you fully process it in the moment. It takes a little while. I think I found out over the phone. 

My wife was out but came home about 30 minutes later, and we sat at the kitchen table. The kids were at school, and we just talked, cried, and said we’d get through it together. 

Stage 4 was scary. I read a little bit about how stage 4 is different than it would be for breast cancer or pancreatic cancer or something like that. It was a tough period between when I got the diagnosis and when I started the chemotherapy. 

It was tough physically. I had a six-centimeter mass underneath my armpit, and it was hurting. I would go around with ice packs under my armpit, which sort of seemed ridiculous, but it gave me relief. 

Physically, I was in bad shape, and I was not strong. I was tired. Then mentally, it was hard not to be doing anything about it. 

It was about two or three weeks before we got the chemotherapy going. Once the chemotherapy started, the R-CHOP, I felt like at least something was happening that would fight the cancer.

How did you decide where to go for treatment?

I started at a regional medical center, and that’s where my primary care physician was. It’s a perfectly acceptable place. I mean, there are good doctors there, and it’s a reasonable option. 

But I’m lucky to live in the suburbs of New York, where there are top-notch, best-in-class hospitals for cancer and places for cancer. 

We have a friend who is a nurse at Sloan Kettering who suggested that I look into Sloan Kettering, and it’s not always easy to get in there. She pulled a few strings and helped us get in there. 

I was pretty far down the road. They were going to start chemotherapy at the regional medical center, and they kept calling me to put a port in. I kept delaying it and delaying it because I knew I wanted to get into Sloan Kettering. 

I’d had the lymph node biopsy at the regional medical center, but I think it’s important for someone to keep in mind that even if you’re a little down the road, if you have the opportunity to switch to a world-class place, you go to the best place you can. 

If this had been a straightforward, plain vanilla case, I think the regional medical center would have been fine. I would have done the R-CHOP. It would have put me in remission, and I would have stayed in remission, and they could handle that. 

But as we’ll talk about, there were a lot of twists and turns, and that was fortuitous to go to a world-class place to handle those twists and turns.

Symbolically, every time I looked in the mirror, it was a stark reminder that I had cancer.

I’m a middle-aged man, so three-quarters of my friends are bald anyway. I can understand where for a woman it would be more jarring potentially. But I thought, “My life is on the line. Who cares what your hair looks like?”

It was beginning to be Winter. Most of the time I had a winter hat on anyway, so you couldn’t really tell. Not that I cared a lot.

Did you experience identity loss with the hair loss?

Symbolically, every time I looked in the mirror, it was a stark reminder that I had cancer. I didn’t really care about it cosmetically a whole hell of a lot. But it was a reminder that you’re a cancer patient. 

I’ve lost my hair now three times and grew it back, and it’s starting to grow back again. I never cared a lot about it cosmetically, but every time it’s fallen out, it’s been a reminder that I’m going through chemotherapy and that I’m afflicted with cancer. 

In terms of what we told the kids, we were pretty straight up with them after I got the diagnosis that I was going to lose my hair, that I’m having chemotherapy, but that the chances of a complete recovery and long-term remission are good. 

We didn’t get deep into statistics, but we said [it was] very likely. We didn’t dwell on percentages that you don’t make it or that you do get cured or recurrence or five-year survival rates or any of that. 

But we just said it’s not one of these cancers where you’re doomed, and we continue to be honest. We were pretty straightforward with them.

»MORE: Patients describe dealing with hair loss during cancer treatment

Did you have scanxiety after the midway R-CHOP scan?

Yeah, I did. I mean, it seemed like it would take a day or two for the radiologist to read out the PET scan. I remember one time I had it on a Friday, and it didn’t come back until a Tuesday, which was definite scanxiety over the weekend. 

You just tried to occupy your mind with other things. But every time I have a scan, I’m nervous.

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

Does anything help with the scanxiety?

No. The only thing I can say is if they tell you not to eat and it’s a six-hour window and you have a scan at noon, you can get up at 6:30 and eat a small breakfast, which makes it more bearable than having gone from dinner the night before. 

You don’t want to eat [a] three-egg omelet and bacon and sausage, but you can have a piece of toast. 

That’s been helpful, and I’ve been told that by physicians. Not necessarily the one ordering the scan, but it’s not going to screw things up. 

Just make sure that if you’re drinking the contrast, that it’s cold and that you have a straw. [It’s] helpful just to get it down easier. That’s the only thing I can think of.

Recurrence of Cancer

Getting bad headaches

It had been about six weeks since I got the all-clear on the final scan from the R-CHOP. We had gone out and celebrated with friends who had been supportive of us.

I started getting headaches in mid-May that were pretty bad and mostly at night. I told someone it felt like I drank a 12-pack and had a massive hangover the next day. 

Don’t get too fixated on the probabilities.

Treatment for secondary CNS lymphoma

It was pretty early on that the game plan was created to do four rounds of high-dose methotrexate chemotherapy and then try to transition, if that worked, to a stem cell transplant. 

There were all kinds of twists between the methotrexate and the stem cell transplant. But that was the game plan from the very early days. Methotrexate chemotherapy, for those who aren’t aware, is you get infused with methotrexate, which looks toxic and is toxic. 

Then you have to excrete it from your body, stay inpatient in the hospital, and literally sort of urinate it out over three or four days. Some people, it takes six days. They don’t let you go home until your blood levels of methotrexate hit a certain threshold. 

I was there for Father’s Day weekend. I was there for 4th of July weekend. Thankfully, I got out on the 4th of July itself. It sort of screwed up the summer pretty well. 

But I only needed four of them, so I just kept in mind that I was investing one 4th of July to hopefully have maybe more 4ths of July.

Were you able to have visitors during this time?

It was enough post-COVID. I could have, I think, one visitor at a time, two visitors a day. My wife came almost every day during that period. She was very supportive. 

I had friends who came the day she wasn’t coming or late in the afternoon if she had to go home. Friends kept me going, and sort of humor kept me going. You could laugh or cry, and I sort of chose to laugh. I think that’s important. 

Like I said, you have your moments where you cry, but humor is very important to me in dealing with cancer, because otherwise, it’s just overwhelming. And maybe it’s a defense mechanism, but it helped.

You could laugh or cry, and I sort of chose to laugh. I think that’s important. 

What is the importance of letting yourself cry and feel your emotions?

I think it allows you to be honest with yourself. If you ignore it, you’ve repressed something, and it sort of crops up anyway. You’ve got to be intellectually honest about the fact that you may not make it, but not dwell on that fact. 

You want to plan for the worst and hope for the best. It’s important that you have your affairs in order, that you have a will, and that hopefully you’ve gotten life insurance before the cancer diagnosis because it’s pretty hard to get it once you’ve had the cancer diagnosis. But you want to plan for the worst, and hope for the best. 

The humor wasn’t just for me. We told the kids about the recurrence, and I said to the three kids, “Any questions?” 

I expected them to say, “What’s the chance that you make it? How sick are you going to be from the chemotherapy?” 

And my daughter raises her hand and says, “Can we still go to the Harry Styles concert if you’re going to be immunocompromised?” That was humorous to me, and it showed me they were still kids.

I knew I wasn’t doing a crappy job as a parent and they were totally self-centered. It was good that they weren’t letting this completely dominate their life.

»MORE: Parents describe how they handled cancer with their kids

Stem Cell Transplant

Why was the stem cell transplant delayed?

I finished the methotrexate, and [we had] a scan that showed the brain was clear. This was in mid-July. In August, I got an infection on my arm that delayed the stem cell. We were going to do it at the end of August. 

It delayed it about a week. Because it delayed it a week, the doctor wanted to do another scan to show that the brain was all clear because it had been seven or eight weeks at that point. They had a threshold of how long they’ll keep the old scan valid. 

That scan showed three spots in the brain where there was still disease that were new spots, and so I had to go get two more rounds of high-dose methotrexate two weeks apart. 

Then they did another scan, and those three spots had been eradicated, for lack of a better word. But there was a new spot that hadn’t been there before or was part of the original spot, or they weren’t sure. 

Then I had to have 12 rounds of focal radiation, which is very targeted radiation. I would go every day, Monday through Friday, for 12 days. 

I didn’t find that too bad in terms of side effects or disruption to life. Some people do, and I imagine it depends on how big an area you’re having radiation on and what kind of radiation. That was a bridge to the stem cell transplant.

How were you doing at this point?

The worst part was getting that first scan back that showed, after the seven- or eight-week delay, the lymphoma had come back in the brain, because it was literally the day before I was scheduled to go in for the stem cell transplant. 

So I had mentally gotten myself ready for a month in the hospital. I had started packing a bag. You have to get yourself where you’re sort of girded for high-dose chemotherapy and being pretty sick. 

Then to have that recurrence was just demoralizing, so that was the hardest. I think over time my mental state got better, but I was pretty bummed for the first three or four days after that scan.

Autologous stem cell transplant

I was there for about a month, a little less. 23, 24 days. In my case, I had thiotepa + BCNU, which is carmustine, chemotherapy in high doses. I had a three-day regimen. Right when you got in there the first day, they gave you chemotherapy. That’s one regimen. 

Transplant side effects

They put the stem cells back in, and then the next few days you’re okay. After that, you begin to get very weak and nauseous at times. Your white blood cell count drops to less than 0.1, which normally is 4 to 11. 

Your platelet count drops. You can’t shave. Back then I was shaving. Now I’ve let the hair grow. It’s because they don’t want you to bleed because it won’t clot. 

You feel kind of crappy. Your appetite is de minimis. There were days I’d have a milkshake and that was it. 

I had the rhinovirus, which is basically the common cold, but I had a very bad cough through all four weeks of the stem cell transplant. 

[It] made something that was difficult in the first place even more difficult, because it would keep me up at night. It was an added complication that wasn’t needed.

Stem cell transplant recovery

I think had things gone as planned, which they didn’t, a full recovery would have taken about 2 to 3 months. You have to be very careful about infection. You have to be careful about what you would eat. 

You couldn’t order a turkey sandwich at a deli. You had to have food from home. Make sure you’re not eating raw fruits and vegetables that haven’t been washed or cooked. So there were diet limitations. 

I was tired and fatigued. I had to use separate towels and separate pillowcases. Just from an infection standpoint, we were limited in how many guests we could have in the house. 

I had to ask everyone to wear a mask and sort of pre-clear people. [It was] not just, “Have you had any COVID symptoms or been around people with COVID?” [It was also,] “Have you been around people with a cold?” 

And if they said yes, then most people are smart enough to say, “I’m not going to come over.” You don’t have to really ask them not to come over. 

I think a normal recovery would have taken about two months, two-and-a-half months. I had worked the whole time through all this from home [with a] very flexible schedule until the stem cell transplant started. It was a big enough recovery that I didn’t want to work during that time.

Major Complications

Why did you end up going back to the hospital?

I came home mid-December of 2022, so a few months ago. The first week I was very weak and sort of just getting my sea legs under me. 

The second week I was doing better, and then the third week I started regressing. When I would walk up the steps, I would be short of breath, very short of breath, and it became apparent that something was not going as well as it should. 

Being on a ventilator

It took about a day and a half of my oxygen level dropping, and then it got to the point where it dropped so much that they had to intubate me, sedate me, and put me on a ventilator. 

They weren’t sure I was going to make it. My wife brought the kids in to say goodbye, and I don’t remember it because you get sort of amnesia from the period before the sedation, like 16 hours or whatever before the sedation is given. 

I was on a ventilator for eight days and came off it and started breathing on my own. They wean you off. 40% of your oxygen will come from oxygen given by them, and 60% will come from your natural breathing. Then they sort of wind it down till you get 100% your own breathing. 

I made it, and I was in the ICU for another week or so and then transferred to the main part of the hospital. What I didn’t realize and now do is that you get very weak if you’ve been on a ventilator for eight days. 

Your body doesn’t move basically. They “prone” you, which is [they] put you on your stomach. You can get all kinds of bedsores, and your muscle mass declines by about 2% every day that you’re on a ventilator. It doesn’t sound like a lot to lose 16% of your muscle mass, but I couldn’t walk when I came off it.

What was it like hearing you were on a ventilator?

It was tough. She didn’t initially share it with me. I pressed her after about a week of being off the ventilator. Eventually, she showed me pictures of me on the ventilator. My recollection of the room I was in was totally different than what the room looked like in the pictures. 

It was like I was in my own little world. When I came off the ventilator, I woke up, and they said, “You’re at Sloan Kettering. It’s a safe place.” I thought I had been in an airplane crash and that’s why I was at Sloan Kettering, not because of cancer. 

I thought that my wife and I had been in California and had to get back to the kids, the only plane she could get was a cargo plane, and we were in the cargo hold. This seemed very real to me. It must have been the dream I was having coming out of the sedation. 

I said to her, “I don’t think it’s a good idea to fly home in the cargo hold, but I trust you. And if you think it’s a good idea, then we’ll do it.” Next thing I knew, I woke up at Sloan Kettering, and I was mad at her for like two days. 

I didn’t realize. You can’t talk. You’ve got tubes in your mouth and in your nose. You can’t write. You can’t communicate. Nobody realizes that that’s what you thought.

What were you thinking and feeling about what had happened?

It was just hard to miss eight days of life and not know what happened. So I was very inquisitive, which is my nature, about what happened. 

I also thought I was going to be a vegetable when I came out of the sedation and had all the tubes in me. My arms were so weak I couldn’t even really move them. So I thought I was sort of paralyzed, which was difficult. 

But she was very good about feeding the information as I could handle it. She sort of held off on information for the first four or five days because I was just dealing with getting back to being alert and awake. 

I think she was smart. She took my phone away, so I wasn’t communicating with anyone for five or six days, and I was just sort of recovering from being [under] sedation.

Being in Recovery

Has this been a test of patience?

It’s been a test of patience, but I was impatient in the hospital. I have been in there so much. I worked hard at the physical therapy, and I wanted to get out. I wanted to get out by my daughter’s birthday. I had a lot of motivation. 

They wanted me to go to a rehab hospital for a week, and I sort of made enough progress by working hard at it that I was able to go home. So I wasn’t that patient. 

I was pushing pretty hard. I guess I’ve been patient through this long period; it’s been a year and a half. But I’m not that patient.

What is the follow-up plan?

I’m following up about once a week with labs, and we’ve done a mix of telemedicine visits and in-person visits. I don’t know how long we’ll keep going once a week for. 

Eventually it’ll be once every three weeks or two weeks. I have a scan in early March to see whether the stem cell is working. 

It won’t mean it’s worked because we’ll need five or 10 years of scans that don’t show anything to know that it’s worked. But at least hopefully it will have worked for three months.

Have you allowed yourself to adjust to life, or are you prepared for more twists?

It’s a bit of a mix. I don’t have huge structure to my day. I’m not working again yet. The kids are at school. My wife is busy with her life. So I have a lot of time to think. I try not to. I try to read or watch TV or do something quasi constructive. 

I’ve had friends over. I’ve sort of gotten half back in the swing of life, but it’s not fully because you’re not going out a lot because you don’t want to be around crowds. You don’t have a natural social life during the day. So it’s sort of half back where it was.

Do you try not to hope too much?

Yeah, I’ve learned to temper my expectations. But you’re always hoping for the best, and it’s still a blow if something [happens]. If this scan isn’t a good result, it will be a huge blow. 

You try not to get ahead of yourself. Like I said, I don’t think you take it one day at a time, but at this point, I take it one week at a time. I’ve got enough to do with physical therapy and just getting my strength back.

Support from family, friends, and work

Most of my support, of course, came from my wife and children and good friends. This experience really underscores who’s your good friend and who’s just sort of there during the good times. 

I got lucky. I work at a very big bank on Wall Street, but I work on a small team of four. Without getting into detail, everyone had been touched by cancer somewhere in their family in the last two or three years. 

Everyone was very flexible about schedules, doctor’s appointments, missing time, and, “Do what you got to do to take care of yourself, and we’ll work around you.” So I got very lucky. It wasn’t like people were out to get you because you were missing work a lot.

»MORE: Patients talk about working during cancer treatment

How life changes after cancer

I think any time you have an experience that highlights your own mortality — particularly at not young but sort of a much younger age than you would expect to be grappling with it — you want to examine your life, and I’ve started to. 

I haven’t come to any conclusions, but you just want to make sure you’re spending your days doing what you want to do, spending it with the people you want to spend it with and who want to spend it with you. 

Not that you can’t waste an hour, but just make the most out of every day. It’d be a shame to let this experience go and do everything exactly the same as before.

Did you ever wonder, “Why me?”

Yeah, and I didn’t have it at the first diagnosis. I had it when the recurrence [happened] at the end of the summer [with] the cancer in the brain. 

I thought, “Why is this happening to me? Why is this not being cured or going into remission?” So there was a little bit of “woe is me” at that period of time. That was probably the worst of it.

Both patient and caregiver having support from friends

We both had other people that we could talk to. I’ve had friends who stood by me. [There was] one in particular who I’ve been friends with for over 40 years, who I could talk to. I have a twin brother, who I’ve talked to. 

So having a support system because you can’t burden each other. You’re going to have things that you want to gripe about, and your spouse isn’t necessarily the one to gripe to. 

She has good friends here in town. When they saw that she was getting overwhelmed with caring for me and caring for the children and running the household, they would say, “Hey, come on, have a drink. Come on over tonight to my house.” They would do an impromptu get-together. 

She had a lot of women who formed the meal train and cooked dinners for us. She had a lot of support in the community. If we had been somewhere where we had only been for six months, I think it would have been hard without a support network to go through this.

Final message of advice

My mistake, to the extent I made one, was thinking that I would know how it all would go at the beginning. I think you’ve got to realize that this can be different than what you expect.

Keep your expectations in check, but also don’t have too many of them. That doesn’t mean you’re not fighting. 

I’ve always said — and I said this to my daughter — that I don’t like when people say, “He lost his fight with cancer.” It sounds like he wasn’t trying hard. 

You’re fighting it, but I don’t think of it as losing your fight if you don’t make it. That’s important for people to know.

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