Muddy sez it’s gonna be alright.
When last we met, an unexpected recurrence of lymphoma in my neck derailed plans for a stem cell transplant, which is really the only viable option I have for any kind of long term remission. No sure thing, to be sure, but in this situation you gotta grab the best bet and push your chips onto the table.
They sent me home to have another surgical biopsy, but by the time I met with the surgeon the entire “recurrence” had disappeared. Quote…
There really isn’t anything there for me to take out.
(Fun fact: Five years ago – six months after the Summer of Tick – this same doc was gobsmacked when I showed up for a fourth biopsy and had miraculously shed all trace of swelling. His comment then: “There really isn’t anything there for me to take out.” He was sure I had lymphoma then. He was probably correct.)
Anyhoo, we spoke to our ace oncology pharmacist at Shands, who then spoke to the transplant doctor (the one who said “You have a very aggressive form of cancer, and no good options.”), who then decided that I should come back to Shands straightaway for more scans and tests &c.
The outcome – revealed this afternoon – is that I am clear of any sign of recurrence. Onward and upward with the transplant!
But the big thrill of the past couple of days has been the several sessions of nurses and doctors reciting the possible negative outcomes of stem cell transplant.
Yesterday, the nurse presented this info with a terrifically inappropriate kind of chipper happy talk. Imagine the following in an octave higher-than-normal-sing-song voice you might use to coax a toddler into taking a nap.
“So, first thing is, the transplant could, um, take your life.”
She went on from there to describe tingling fingers and lips; lack of fine motor coordination; fatigue; mouth, throat, and intestinal lesions; confusion; bone pain; skin rash and itching; dizziness; constipation and/or suddenly explosive diarrhea; and organ failure. She averred that she had never seen any of these unpleasant outcomes in her whole career, which upon questioning stretches all the way back to 2016.
All of this pleasantry was delivered in a sing-song punctuated by reminders to tell the nurses if anything feels wrong, the admonition that “we do not play ‘suck it up buttercup’ around here” recurring at disturbingly frequent intervals. It was like a sitcom tagline, Steve Martin shouting “Well Excuuuuuuse Me”, or Fran Drescher laughing.
By the fourth time she said it, I was ready to scream. By the eleventh recitation, unpremeditated manslaughter was on the menu. I restrained myself, but only just.
Today, we had to endure the same litany from the Head Honcho Doc, followed by me signing documents attesting that yes, indeed, I understand all the crap things that could happen. Now this is a guy that might be considered ‘on the spectrum’ (as ‘they’ say). In contrast to the nurse’s delivery, Dr. H spelled it all out in a largely affect-less delivery. Same info, but no buttercup happy talk. As Sgt. Friday would say, just the facts.
Funny thing. After the nurse’s chipper presentation, I was a fucking wreck filled with dread and premonitions of disaster. Terrified, really. But after meeting with doc today – just the facts, ma’am, no happy talk assurances – I felt reassured and ready to go.
So then. For now, we are back home with the dogs, a cold IPA at hand, the Sons of Kemet blasting 1Go listen to this scorching set from this year’s Big Ears. NOW! while we wait for the next chapter(s).
On Saturday, we begin the stem cell harvesting process, aka apheresis. For four days, I will receive twice-daily injections of a bone marrow stimulant (neupogen for the detail oriented). On the third day (oh, poetic portent!) they will install another port in my chest, this one with three dongles, a sort of Cerberus of access to my internal jugular vein.
On the fourth day we will harvest stem cells. I will be attached to a machine that takes blood out, spins it like a motherfucker (paging Dr. Brakke!), and then returns it to my system. Six hours, no detaching. The worst side effect of this process is boredom.
Then they send me home for a week. And then the real shit starts.
When I return to hospital, I will not step back out into sunlight and unconditioned air for at least 4 weeks, maybe as many as eight. First step in this is chemotherapy program (BEAM, for the curious) designed to pummel my immune system into nothingness. After six days of this (and this is where many of the more unpleasant side effects are likely to begin), they will reinject my stem cells to kick start my immune system from the proverbial ground up. My new birthday will be August 30.
If all goes well, I will then face 2-3 weeks in hospital and 2-3 weeks as an outpatient which requires me to stay in Gainesville. If all does not go well, my stay in hospital and Gainesville may be longer, or, if things go terribly wrong, I could find myself on the wrong side of the dirt at any point along the way.
Just the facts, yo.
Still in all, I feel more positive tonight than last night when I tossed and turned all night in our hotel bed, visions of explosive bowels and sudden organ failure dancing in my head.
Tonight my vision is of beating their estimates of how long I have to stay in stir. Tonight my vision is of putting this shit behind me and moving on like a beastly motherfucker, ready to kick ass and take names. That’s where I see myself going. I might be deluded, but it beats the alternative of figuring that shit is going off the rails.
So for those who wish to help: We have some of our time away covered as far as dog and house sitting are concerned, but we still have some gaps in the calendar. Get in touch if you or anyone you know might be able to help.
Also too, and as always:
LOVE EACH OTHER, MOTHERFUCKERS!
That is an order.Follow @immunetoboredom
References [ + ]
|1.||↑||Go listen to this scorching set from this year’s Big Ears. NOW!|