Have you heard this one before? Stem cell transplant recipient walks into a bar...
No? Well maybe because there's no punch line there. Walking into a bar and actually having a drink, like many things for me these days is pretty normal, and very un-newsworthy. I've been to work; been to restaurants; been on public transportation; and even been to a conference with more than 700 people. I feel a bit like a zoo animal, who after being cared for in a sheltered, controlled enclave has been released into the wild - with equal parts excitement and trepidation.
Of course, one of the first things I did was catch a nasty little cold, which I was kind enough to share with Stacy. Then about three weeks later, I discovered another, much less nasty cold. Welcome to the wild. I suspect that this is somewhat to be expected as my brand-new immune system builds itself back up. It makes me appreciate how many precautions we took for more than a year; and it also makes me appreciate how lucky I am to be able to return to living a relatively normal life.
I'm just about 14 months post transplant. My visits to my oncologist are now spaced out to every two months - and given the amount of poking and prodding at the last two visits, that's a good thing. At 12 months, I had a PET-CT scan, which is pretty painless with just the small pinch of an IV line inserted so they can shoot you up with radioactive material. But add in a full complement of seven immunization shots and there's a definite pin cushion feeling. Six weeks later, that was followed by an appointment with only 2 immunization shots, but the added fun of a routine bone marrow biopsy. I'm not a fan of the phrase "routine bone marrow biopsy" but having had 3 or 4 of them now, they are a bit routine. Not fun, but not overly long procedures - and the combination of a little ativan, a little oxycodone, and some lidocaine and it's tolerable. That said, that painkilling combo did wipe me out that evening and in hindsight, walking two miles to the train station in the 75-degree weather might not have been a great plan. But here we are.
More importantly, the PET-CT scan was clean. And I'm pretty sure my bone marrow results are also clean - although I'm not trained to read pathology reports, so I'm waiting to actually confirm that with my oncologist.
It's a bit of a weird time, if you want to know the truth, to quote Holden Caulfield. As I move from recovery to normal life, I continue to work to tame the anxious voices lurking in the shadows. When I was recovering, my focus was on the milestones - get stem cells engrafting so I can get out of the hospital; get to 100 days to enjoy take-out food again; get cleared to go out in public a bit; get GVHD under control and wean off anti-rejection drugs; get to a year. Now without that recovery focus, it can be tempting to fall into a state of worried wellness, longing for some guarantee that at some point post transplant, I'm in the clear. But the reality is that we are never in the clear -- which sounds a bit dark, but I don't mean it that way. It's just that there are no health guarantees and to wish for them is wasted effort.
The transplant's got me to this point and with each passing day, week, and month, it ever so imperceptibly fades a little into the background, and life itself in the quotidian routines of living and working emerge into the fore.
I'll drink to that.
So glad you made it to the conference! It was wonderful seeing you and having some time to catch up. Love that doughnut wall shot! Jennifer B.
ReplyDeleteI see you champing at the bit to take a bite from one of the donuts! I agree that no one is ever in the clear, but pushing oneself closer to the clear is a worthy aspiration. Here is to your full and sustained health, Buller.
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