New Struggles

At five years post-transplant, we’re told that the odds of relapse are quite slim. After two years, in fact, those odds are quite slim. If you make it that far without the stem cells being rejected, or without a cancer relapse, you’re probably going to make it.

I didn’t want to ever write a post in this section of my blog again. But here we are.

In April of 2022, the last thing on my mind was a relapse. I was getting pinkish spots on my skin – around the arms, legs and waist, mostly. In May it was getting worse, but I attributed it to sweat from my workouts. The temperature was heating up, and even though I’d been working out daily for several years, it’s not a crazy idea to believe that there was some sort of a heat rash developing. I used to get heat rash for a couple of years as a teen, so no alarm bells were ringing. I went to my family doctor and got a cream for it. A couple of weeks later it was still getting worse, My hands were getting blistered easily, and they weren’t healing. I went back and was given a different cream, with strong anti-fungal dosage and steroid. I bought gloves for my workouts, which seemed to stop further hand issues. But the rash remained.

I went in for my annual post-transplant checkup at Princess Margaret, seeing my hematologist, and he immediately took it seriously. He treated it like it was Graft vs. Host Disease (GVHD), and got me right into their dermatologist. I was also getting issues in my mouth, where it was becoming raw inside the cheeks to the point where I couldn’t handle hot spice nor mint. As a person who eats his wings ‘suicide’ and his nachos with ‘fire salsa’, it was terrible that I now couldn’t even handle ‘medium’ sauces.

I was given, by the dermatologist, yet another cream, as well as a steroid rinse. The rinse helped enough that I could go back to ‘hot’ sauce after a couple of weeks. The cream didn’t do much. I was put on a steroid (pills) and that seemed to cause the rash to retreat a little. The hand issues were now gone. But then it stopped retreating everywhere else, and things were at a standstill. The steroid was no longer helping. The doctor (both of them – hematologist and dermatologist) tried to get me into a UVB treatment. The wait list was several months.

2023

In January of 2023, I was at this point five months post-transplant, and the doctor put me on a pill called Jakavi. This pill stifles the immune system and theoretically will stop it from attacking my skin. Over the next several months, the rash slowly disappeared around the waist and most other spots. There were still some pink spots here and there. My blood counts were dropping – mainly the white blood cells and neutrophils (as expected), but also other counts.

In April, I actually got in to see the UVB specialist, but because the rash was mostly gone, there was nothing he needed to do. However, he kept me on his patient list and if it returned, he could get me right in.

By the summer, I was starting to feel tired more easily. Harder to detect for me, because not only am I active with daily workouts, but summer is crazy for my business. By July, workouts were becoming harder to do. I found myself ‘cheating’ by sometimes holding the rails on the treadmill. Or sometimes not picking up the dumbbells while I jog or run. I attributed this for just falling out of shape, like maybe the workouts need to be increased again since my body was getting used to them.

Then I stopped using them altogether when I was jogging or running (only using them when I walked). I would take breaks – something I never did. Walking up a flight of stairs left me out of breath! I knew this had to be from falling blood counts. At this point I’m going into Princess Margaret every three weeks.

In mid-August I went in and there was a bit of a bombshell: my neutrophils were at 0.4. This rattled me, as I had not seen this kind of number since about 10 or 12 days after my transplant! I was afraid the doc was going to say those very scary words that I had not heard in six years: “bone marrow biopsy”. He did not say them, though, but had me come back in early September. He reduced the dose of the Jakavi by 25%. He also prescribed a new kind of rinse for my mouth (I could still eat hot sauce, but there was discomfort – and things were definitely not healed in there). I was also prescribed a needle to put in my belly that would kickstart the white blood cells. The latter helped to give me energy for a few days. The former actually helped my mouth, and at one point I thought it was 95% better.

Early September brought more bad news. Neutrophils were down again to 0.2. So now I have no immunity (even though I don’t get sick, even with sick kids in the house around me). He reduced the Jakavi dose further, to 50%. I was prescribed the belly needle again (three doses this time), as well as antivirals and antifungals. My exhaustion and fatigue was really hitting me, though those needles helped for the first couple of weeks. But by late September, I was fried. No energy. Could mostly just walk on the treadmill while holding dumbbells and only occasionally bumping it up to a jog or maybe a 10-second run. But the NHL season was fast approaching and this was the only time I could sell my Fantasy Guides, and market my two new apps! So I’m working as much as I can, as well as I can, trying to get in what workouts I am able to manage, as well as trying to help train my youngest daughter, who is in competitive soccer.

October 10, 2023

This was the day that the NHL season began. It was also the date of my next visit to PMH. The WBCs and neutrophils went up slightly. Neutrophils were at 0.3. But the doc was very concerned about the hemoglobin and platelets. Hemoglobin was down to 88. These are things that should not have been affected by the Jakavi. He actually floated the idea of increasing the Jakavi dose again.

“What are we fighting here, doc?” I asked. “Are we just fighting the rash? Because if it gets worse again, I can go and see the UVB specialist and treat it that way. I really don’t like that pill.”

He actually backed off immediately, obviously not totally sold on the idea anyway. He ordered some more tests on the blood that was drawn that morning, so he could drill down on why the hemoglobin was low. Then he prescribed more belly needles, and took me off Jakavi altogether. I’ll come back in four weeks.

Let the rollercoaster ride begin

I returned home relatively happy. My neutrophils were super-low, but at least they went up a tad. I’m off the Jakavi. He didn’t mention “bone marrow biopsy”. All three things made up my goal for this visit. Seems like I’m on the right path. Until the phone rang, that is.

It was the doctor. I need to come in two weeks instead of four – he wanted to do a bone marrow biopsy. So there it is. One of the scariest sentences I can think of besides “you have cancer” and “you’re going to die”. But I feel like this particular sentence is a precursor for the other two. I know I shouldn’t feel like that, but I can’t help it. This hit me like a sledgehammer, and I’ll be lying if I said I didn’t cry. I shared with those closest to me (not my kids though). Throughout the day, I struggled to get a handle on it, unable to do the hockey stuff that I needed to do on the day of the NHL season starting.

When the kids came home from school, I stiffened my spine and tried to act normal. I brought my youngest to cross country training and tried to distract myself while waiting in the car for her to finish. By the time we were back home, I felt a little closer to normal and after distracting myself with some television, I went to bed early (11:30 is very early for me). I actually had a good night’s sleep. But that all ended at nine o’clock in the morning when the phone rang again.

It was the doctor again. He wanted me in for next week, instead of two weeks. He also wanted to tell me not to start on the needles (the one I put in my stomach to stimulate WBC), as it would impact the bone marrow biopsy results. I asked him point blank if it’s possible that the cancer has returned.

“That’s what we’re trying to find out.”

My world came to a screeching halt

Yes, I won’t know for sure until the results of that biopsy come back. But what else could it be? My logical mind has kicked into high gear. Lymphocytes are high, hemoglobin is low, and Jakavi (from what I understand) has no impact on those.

I can’t focus today. Writing this out has helped. It’s the waiting game until Tuesday, and then another waiting game until we see results, which I figure will be the ensuing Friday.

Up for it or not, this is the start of another battle. I think.