Testing 1, 2, 3, 4...

Echocardiogram, EEG, Lung volume study, Chest X-ray, 14 vials of blood and a PET/CT scan. That was last Thursday. It was a lonnnnnng day but a necessary one. And most importantly, all results look good with the PET/CT scans remaining clear.  Or as the report reads: "No evidence of FDG avid lymphoma." It wasn't as exciting as the scans from five weeks ago because we kinda expected this, didn't we? But clear scans are clear scans are clear scans.

Friday was the bone marrow biopsy - not as scary as it sounds but I'm not lining up to do it again anytime soon. We won't get official results for a week or two, but at this point, we are not expecting to find anything that would prevent us from going forward with a Stem Cell Transplant.

Why do a stem cell transplant?

I feel great and all indications are that I am free of lymphoma. And so the question that I hear most from friends is something like: If you are cancer free why do a stem cell transplant? Well, what you can see at the imaging level is not the same as what might be lurking at the cellular level. Lymphoma is a cancer of the blood; it doesn't originate in any one part of the body like, say breast cancer or prostate cancer. It's not really clear where it originates, and so while it seems like I'm cancer free, there could be cancer cells lurking undetected. So the whole stem cell transplant process is the best chance of getting rid of that, and putting the lymphoma into a long-term remission.

The prospect of doing a stem cell transplant was always an option, but there's an important set of events that brought it from the background to center stage. For 11 years, I've had follicular lymphoma, which is considered an indolent, or slow-growing lymphoma. So slow-growing that in 10-plus years, we treated it with chemo/immunotherapy only twice. We would generally start talking about treatment options when scans would show lymph node/tumors growing past 3 cm. That would take years. 

What happened is that some time in 2022 my indolent lymphoma transformed into diffuse large b-cell lymphoma (DLBCL) with a little bit of double-hit lymphoma.  DLBCL is not indolent. No, no, no. It's aggressive. And fast growing. In about six or seven months since my scan in late 2021, my little tumors had become "bulky" with an accumulation of masses measuring 17 cm. 

Aggressive lymphomas tend to also respond well to treatment, as evidenced by the response to the four rounds of R-CHOP. So now the goal is to knock out the aggressive lymphoma and either return to the good ole days of follicular lymphoma, or maybe cure the follicular too, while we're at it.

What is the SCT process like?

So the R-CHOP is done. The testing is done. Now we wait. And, no, that's not the hardest part, although I do wish we could start tomorrow and get it going. I think the actual process will be a little tougher than the waiting. We start with getting a port placed in an out-patient procedure. That's followed by stem cell collection - also an out-patient  process similar to dialysis or platelet donation (the latter of which I used to do before I was diagnosed). When we have enough stem cells collected (2 million at least), they freeze them.  

From there, I'm admitted to the hospital for six days of high-dose chemo. Then my stem cells are reinfused back into me (after they've been thawed, thank you) and we wait for my blood cell counts to recover. In total, I should be in the hospital for about three weeks. Assuming I feel well enough, visitors are permitted in the hospital (as long as they are gloved and masked). 

Once I'm discharged from the hospital, recovery at home is a long process. For the first two weeks at least, I'm still on a neutropenic diet. That means I can't eat anything that we don't prepare at home. Nothing from restaurants or anyone else's kitchen. No GrubHub. No neighborly casseroles. It's all processed food and stuff we cook here. And for about 2-3 months, life in the bubble continues:  no visitors, avoiding stores, crowds and people in general. 

That's the plan. My hope is to do a daily blog post once the whole process starts -- even if that's just a quick sentence or two. But there's still three weeks to go before we get to that point.

It's All Relative

 I'm always amazed at how quick my mind feels on good days. Chemo and its after effects can cast a mostly opaque film over my mental state. And when that veil is lifted, there's a crispness of thought, a boost of mental energy. It's a great feeling like when you wake up clear headed after being dragged down by cold symptoms for a week.

For both round 3 and round 4, I had  figured out how to keep any nausea at bay until the danger has been washed out to sea. The routine these past two cycles was pretty much the same. In the first few days following the chemo, I felt pretty much 100% -- or so I thought -- with the only issue being the occasional back and joint ache courtesy of the Neulasta, a white blood cell booster that is released into me 24 hours after chemo. In full disclosure, the back pain freaked me out when it came in round 2 given the history of where this whole thing began and I had a moment of panic that the lymphoma was fighting back. But that was before the clean scans. So when the back pain cropped up, I took a few acetaminophin and carried on.

By day 5, as the prednisone (steroids) end, I start to get a little fatigue and that carries through Sunday and Monday. But it's not routine altering fatigue - maybe I sleep a little longer, but I still get up, walk the dog, and go to work thinking all is fine.

Then I wake up Tuesday and realize that my legs don't hurt when I walk up the stairs; that conversations flow more smoothly; and thinking doesn't feel like I'm looking through a pair of filthy  glasses. If I never cleaned those glasses, I probably wouldn't even have known that my vision was clouded.

It's all relative.

That's the theme this week. Four weeks from Monday, if all goes well, I'll be getting my central line placed, followed by the collection of my stem cells. All that stands in the way now are a gazillion tests, including a PET/CT scan and a bone marrow biopsy this week. I don't think I can say with all honesty that I'm looking forward to the transplant, but I'm not fearing it the way I might have a year, or even a few months ago. For years I thought that I had avoided the harder of the chemo regimens. When I had Bendamustine-Rituxan back in 2012-2013, I was relieved that I didn't have to go through R-CHOP. But now having gone through four rounds of R-CHOP, it doesn't feel any worse than B-R. My hope is that my ability to tolerate an effective R-CHOP treatment is a predictor of my ability to tolerate the "conditioning" as they call the 6 days of in-patient chemo I'll get as part of the process.

Random photo of our dog, Rocco,
for no particular reason other than
 I don't like posting without any photos 

So much of anxiety is tied up in the unknown. On lymphoma Facebook groups, I always see questions from survivors about what to expect from this procedure or from this treatment. And one of the most reassuring notes I had during this treatment was from someone in one of those groups who had almost the identical disease transformation experience, and who shared her experience with R-CHOP. It demystified it, and between that and the experience of a round of treatment, it made subsequent rounds easy.

I think that's why my nurse spends so much time going over - repeatedly - the steps that are involved in the stem cell transplant process. Day by day, she's reviewed what it may be like and how we will get from here to there. She's not sugar coating it, but she reviews it with a sense of confidence, experience, and calmness. It makes me feel that while it may not be easy, my team will  be prepared to deal with whatever challenges come our way.  After all, as my nurse says, I'm young. But then, that too, is relative.

Can You Kick Cancer's Ass?

 I’ve always been somewhat reluctant to use phrases like kick cancer's ass. There’s an ongoing debate in cancer survivorship and cancer communications circles about whether “violent” terms like battling cancer and fighting cancer do more harm than good. It casts people as winners who "won their fight against cancer' and losers who "lost their battle to cancer" and well, there's a side that says that's bad.  But I haven't avoided those terms because I’m concerned about offending people. Hell, it’s my cancer, and I’ll choose the language I want to use to describe it. 

No, I'm not worried about being on the wrong side of the debate, it’s just that I’ve never felt like I was doing much. I show up at appointments and people do things to me. They examine me; draw my blood; scan my body; discuss options; give me noxious chemotherapy; give me more drugs to counteract the side effects of the chemotherapy. And all along I’m just an innocent bystander except that I’m not a bystander. I'm in the middle of the crime scene, but I’m not doing anything. I’m just there being done to.

Finishing up round 4.
(Tony, Beth - notice the shirt)

Maybe part of it is because for the first 10 nearly 11 years of my Cancer “ journey" -- a word that I'm not too fond of --  there was little evidence of any fight. With the exception of that one course of chemo therapy in 2012/2013 -- and even through that, I had no outward symptoms,  and unless you were living in my house, you could have no clue that I was going through cancer unless you really probed.

I think another part of it is superstition. I've rooted on too many sports teams and watched too many games to know that you don't celebrate too early. You don't get too cocky, especially against a strong competitor. 

But now as I’ve gone through this much more serious bout, the imagery is ramping up. Hell, I even mistakenly typed battle instead of bout in the previous sentence at first. It seems unavoidable.

The thing is, as great as the scans were three weeks ago (see scans on this post), and as optimistic as I am that having finished round four today, the scans will remain clear in two weeks, I don’t really feel like I’m kicking cancer's ass. I feel like cancer is beating up on me and I’m just doing a good job of absorbing the blows.

I don’t want people to take that negatively, Or feel like they have to avoid saying things like "keep fighting" or "fuck cancer" or "kick cancer's ass" even.  But the truth is, there is a certain amount of helplessness that comes with any disease. You do what you can, you make smart choices, you try to stay mentally resilient, you lean on your friends and family, and you put your faith in the care of your care team. Thankfully, my care team at Dana-Farber is the best in the world.

--Michael