Come ride the wave with me.
Week 1 of "Transplant Month"
Saturday-Monday:
It started out easy enough with a few injections in the stomach to get those stem cells pumping. Labs looked good. Myeloma counts are way down, meaning the stem cells being harvested this week would be as helpful as possible in the transplant; off to a great start!
Tuesday:
Labs and placement of the CVC (the line that will be used throughout the month for harvest, transplant, and treatment).
The procedure itself was "fine." The docs did a great job describing the process, and while I was awake throughout, there was no pain during the placement. And then the lidocaine wore off...
The best way to describe it is simply to enjoy Mick Konstantin's wonderfully happy song about the beating Conor McGregor hoped to put on Floyd Mayweather (in this instance, Floyd was my collarbone, and Conor won.) I triple-dog dare you to listen to this song and not giggle. In fact, I bet a bunch of you listen to it twice... Something about that Kildarian Irish brogue and a ukelele... just so great. He could be singing about polar ice caps melting, and my toes would be tapping along.
As of the writing of this post, the pain is much better, the bruise is not too nasty, and "this too shall pass."
Wednesday:
Ok, the line's in place, and now it's time to harvest. For those of you still playing along, the magic word is "Apheresis." And the goal is 8 million cells (enough for two transplants... just in case).
Arrived at the Cancer Center at 8:00 AM and by 8:15 we were taken back to the treatment area and had my lines "degooped" (yes, the actual term used by the nurse). Just a simple flushing of the lines and replacing of the caps. Apparently a not-uncommon first step with a new line. They ran tests to see how "bountiful" the bloodstream was with stem cells... and the answer was "very." So, we were optimistic that we might get all 8 million cells in a single day.
I was warned that one side-effect of the harvesting process is "hypocalcemia," a reduction in the calcium in my blood, simply due to the extraction of plasma and stem cells. And it could manifest itself as a slight tingling/numbing around the mouth, fingertips or toes. And if it happens, they'll hook up some calcium and give me some "Tums" to chew on, and slow down the apheresis machine.
Wondering what an Apheresis machine looks like? Well, wonder no more! Bonus Footage of Wednesday's harvest. The yello bag is plasma cells, and the red bag is the stem cells. At any given time, there's a litre of blood being worked through the machine.
Pretty cool, right? About 5 hours in, I started to feel the aforementioned hypocalcemia. At that time, I was somewhere between 6.5 and 7 million cells harvested. With about 60-90 mins to go, it would be close, but alas, the slowing of the machine meant I'd have to return for a second, albeit MUCH shorter, day.
Once I was unhooked from the Machine, they cleaned the "Gunk" from the connections #LegitMedicalTerm and applied a new dressing on the line. To keep (and I quote) "Goobers" out. So clearly, Wednesday was brought to you by the letter. "G" #Goop #Gunk #Goobers #SesameStreetReference
The process is painless; it's just a long day. Fatigue is also very common; despite sitting/lying down most of the day, the body's actually working really hard to process what's going on. And when I got home, I conked out pretty quickly.
Thursday: We returned (same time) 8:00 AM. After the accounting firm of Dewey, Cheetham, and Howe tallied the votes, clearing all the hanging chads, the final count from the day prior's harvest was 7.7 Million. Not to shabby. So as we walked back to the treatment area for a "rinse and repeat" of Wednesday, the Nurse casually tossed over her shoulder, "we only need a million."
Piece of cake! By 12:30, I was being de-gunked, redressed, and anti-goobered! NB: No Goop present.
Friday: The penultimate visit before $hit gets real with chemo next week... or so I thought.
Going in for the "final formalities," which turned out to be more formal. Prelim labs looked ok, and then my wonderful oncologist came in to see me, asking routine questions. And I gave him my routine truth.
Over the last 24 hours, there were three instances where I got a bit of a hot flash (no fever), but the top of my head started to sweat. It passed after a few mins, but since that is not normal for me, I told him about it.
His demeanor changed slightly, and he asked a few follow-up questions... "what about a cough?"
"Funny you mention it, yes, a mild one" "Tell me about the cough."
"Not much to say, only that it happened 4 or 5 times. It's nothing severe, not persistent; it's coming from the top of my sternum, not deep in my lungs, but not something I have every day.
And then the boom was lowered...
"We have to delay the transplant by at least a week"
[insert cosmic gut punch sound here]
Look, I totally get it. I've got to be 100% healthy before they nuke this cancer... and my immune system. And every logical bone in my body (and even the few illogical ones that are left) understands the reasoning... AND yet, I can't overstate the mental preparation, not to mention the family logistics (spouse, parents, brother, and sister-in-law all upsetting their schedules to help me). It was like getting knee-capped, and despite it being for all the right reasons... it just sucks.
I'm not going to have a pity party. Instead, I'm blogging about it, in the hopes that I can
Process and come to terms with the delay faster
Update this fantastic support network I have
Entertain you (because that makes me feel better too).
And if someone somewhere someday who is also dealing with Multiple Myeloma happens to come across my blog, and this helps them, that's a win too.
So what's next? We wait. We wait for some blood cultures and other tests to come back (I will have a fuller picture in 3-4 days) and if I get the all-clear, the transplant starts on the 15th.
If not, we pound it with anti-biotics, and when I'm healthy, we go...
So it's Friday at 7:00 PM. I'm goning put on some mindless television, regroup and Lysol, and Purell everything in sight. ;)
Your outlook on the process and hiccups is half the battle - and yours is amazing. You're not tilting at windmills...you're fighting the good fight. Always in my prayers. -e
Don't worry about us, we can and have adapted, adjusted and we’ll see you Thursday.