Where To Begin

Starting a New Chapter in My Cancer Journey

I had been teeing up a post about the two-year anniversary of my allogenic stem cell transplant. That post had been written and rewritten in my head a half dozen times. Per protocol, as I approached two years post transplant, I had a PET/CT scan scheduled. Every scan brings some degree of scanxiety as I wrote about earlier this year, but I felt great and was living a very normal day-to-day life. I was even daydreaming about what it might feel like to have clean scans two years out. Would I feel cancer free? Would I feel like this chapter was behind me?

Once the scan was completed, I waited for my results. Now for the last 14 years, every time I had CT or PET scans, I met with my oncologist later in the day. There’s a good reason for that. With the ongoing adoption of electronic medical records, test results are reported back to the patient portal within hours (I’ve seen my basic chemistry lab results report back within 30 minutes). Any abnormality may appear frightening to the untrained eye, and the shorter the window between seeing your results and talking to your oncologist, the better.

This time there was a full week between the scan and my oncologist appointment. So when the notification popped up that my scan results were now available, I peeked. And I didn’t like what I saw. There were a couple of lymph nodes that were lighting up - small ones - but lighting up nonetheless, and indicating a potential recurrence. My first reaction wasn’t fear or worry — that would come later — it was anger. Pure anger. At the cancer, my body, my luck, the universe. I immediately paged my doctor and within 30 minutes, he helped talk me off the metaphorical ledge.

When I saw him at my appointment a couple of days later he outlined the potential scenarios which ranged from a minor infection to something less minor-y. So he ordered a biopsy to determine what was going on. Unfortunately, the biopsy showed abnormal cells and the pathology confirmed that it was in fact the large b-cell lymphoma and not the kind, gentle follicular lymphoma that we had hoped for.

The First 24 Hours

I’ve now been essentially diagnosed with lymphoma multiple times. For the 24 hours after being diagnosed, you feel like you can't breathe. Your heart races; your mind races; breathing feels more like a voluntary act than an involuntary one. There’s this unsettled edginess encircling your thoughts.

That’s how I felt when I saw the scan results; and that’s how I felt again when the pathology revealed it to be large b-cell lymphoma. It’s wearying. Exhausting really and it takes time to recover from the gut punch, to pull yourself off the floor and to stand up and say, fuck you, cancer, I'm not done fighting.

Some people don't like the fighting metaphor. But that's how I need to mentally prepare. To deal with whatever's coming, to prepare for the battle ahead. It’s like a team psyching itself up before the game. It always seems a little over the top but it gets you mentally ready for what’s coming.

Fear doesn't prevent death. It prevents life. - annonymous.

I took a picture of that quote a couple of months back and it popped up in a timely fashion when I was scrolling through phone photos. I'm trying to absorb it so I can live it.

Since I found out that my large b-cell lymphoma is back, I've struggled in a very irrational but understandable way. Even though the tumors are small (not even my oncologist could feel them) and isolated to a small area, I can't help but worry that they are taking hold and spreading. And since then, every ache and pain, every muscle strain, every twitch, every bump launches the fear rollercoaster. The most problematic is when I feel any twinge near my back or stomach, as this sets off an almost PTSD-like response - and that's hardly an exaggeration - as it was the summer of 2022 when that excruciating abdominal and back pain started me on this journey I'm now on (see this post below from 2022.)

From Agony to Gratitude

But I'm 62+ years old, I can strain my back doing a fair number of pretty simple tasks around the house. Rationally, I know that a strain isn't necessarily the cancer coming back. Still with each tweak, there's a violent debate inside my head as I try to battle irrational fear with logic. Different sides win each time. Ironically, this constant thinking and internal litigation produces stress which tenses my muscles, which causes twinges, and creates a vicious circle.

So as I sit here on a plane headed toward New Orleans for a short conference to learn a bit, see some old friends and meet some new ones, I'm trying to remember that quote about fear, and while it may not be easy, I’m trying to stay calm, be rational, and live in the moment.

What’s Next

So what is coming? It seems that the best path forward is likely outpatient CAR-T Cell therapy. Here's what that means per dana-farber.org.

“After a sample of a patient’s T cells has been collected from the blood, the cells are re-engineered so they sprout special structures called chimeric antigen receptors (CARs) on their surface. When these CAR T cells are re-injected into the patient, the receptors help the T cells identify and attack cancer cells throughout the body.”

I’ve been through a lot these last two years, and I could easily wonder what was the point of all that effort —if I’m back to needing more treatment. But here’s the thing, if I didn’t have the stem cell transplant, I might not have a whole lot of options. As I wrote about pre-transplant, the reason we went with a donor transplant was that my stem cells were mutated with cancer markers, enough so that an auto stem cell transplant would likely not work well, and any additional chemo could cause further damage. If we kept treating the lymphoma, I could have ended up with leukemia. Not a trade I wanted to make.

A Funny Thing Happened on the Way to the Transplant

So the way I look at it, it’s not that the stem cell didn’t work, but rather it opened up a new wave of treatment possibilities. It reset my immune system and infused a fresh batch of undamaged stem cells, that even if they got exhausted and couldn’t beat off every last remaining lymphoma cell, they can be primed to fight again. As I’ve learned the hard way, there’s no guaranteed fix. Nothing is definite, but I have a low volume of disease right now; I feel otherwise healthy and, if all goes well, we can pursue outpatient CAR-T with, my two favorite words, “curative intent.”

It’s a somewhat intense process - not as intense as stem cell transplant - but who knows, when I’m on the other side of it, maybe I’ll begin to imagine again what life without cancer might look like.