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.