“… Like a fish needs a bicycle
When you’re tryin’ to throw your arms around the world…”
This is an R&R post; in this world, R&R is Relapse & Remission.
Karen is one day away from completing chemo cycle six or in the aggregate cycle 27.
Her yesterday just sucked, a general malaise permeated her core and spirit. After chemo, she managed to collapse on the sofa. As the blood counts started their dive over the last year+ and relapse turned from fear to reality, we began to speculate about the possible treatment options. To my disappointment, the communications with our Hopkins team seemed tangential at best. The clear plan of attack remained formulated in the cranium of our transplant lead only; however, fortune is with Karen in the form of her hematologist who bridged the gaps. The plan was chemo, Vidaza (azacitidine) injections again. If you’re going to have to take your poison, take the devil you know; the whole process, like riding a bicycle, familiar. Or in line with the mantra of “what doesn’t kill you makes you stronger” – ahem, that’s just bullshit – well, at least bullshit can be good for plants.
Sorry …ok, back on track …Karen’s body responded well to the chemo boost – today’s blood work was good! For perspective, prior to her transplant, she had been reluctant to quit Vidaza and commit to a potentially fatal procedure. Chemo week hit hard but predictable / day-to-day livable one might say, week 2 was a little unsteady, but weeks 3 and 4 were good, as in normal people good. From the first new cycle, Karen privately asked, “Do you remember it hitting me this hard?” Aside from all the usual joys of chemo, nausea, constipation, pulse and bp irregularities – ( do you really want the list? ), the issues from the graft versus host didn’t take a back seat to wait and see what would happen. Immaterial of time, Karen’s body is different from the immediate post transplant self of 10 years ago.
Houston – we have ignition.
Houston – we have lift off – oh hell a flame out!
One of the peculiarities of these rounds of chemo is not the switch from two injections to three directly, but it did factor into the interactions. The three daily injections require more body territory, the belly area is supplemented with launch sites in the legs and arms. The fun increased as Karen exhibited an allergic reaction to the Vidaza. The injection had always ‘sunburned’ the top layer of skin in a half dollar size areas; however, now the injection site pain is complemented by general itching over most of her body. Benadryl and Claritin to the rescue and antihistamine hangover as another added present. The compounding or confounding thing was that each day’s injection re-ignited the previous injection sites – even those from the prior month. Vidaza as a lifetime treatment plan was going to seriously fuck with the quality of life.
“… I need some good news, baby
Feels like the world’s gone crazy
Give me some good news, baby…”
Blood counts are good. Metabolics mostly behaving. Bone-marrow biopsy mostly normal.
Remission! Great. Super. Wonderful. Oh, the plan was to stop after six cycles of chemo and see what the blood production will roll out? Ok. Hell, stopping Vidaza even better!
“…A Fiddler on the roof. Sounds crazy, no?…”
So, Karen and Dr. B did the paper, scissors, rock equivalent to come up with a schedule of monthly monitoring. The thing hard for me to grasp and come to terms with is Remission is not Cured. Are those blasts (immature blood cells) hiding out? Could we do weekly bloodwork? Well, easy for me – all I do is drive.
So, the tell tale heart will pulse us in two months…. Next month, the counts will still be under the influence of chemo.
“…No straight lines make up my life;
And all my roads have bends;
There’s no clear-cut beginnings;
And so far no dead-ends…”
Well see – you probably just should have read the song lyrics. Dropped five in this blog so really didn’t have much to say. So, what to do in the meantime? Waiting on that second draw? Well….
“…There’s only now
There’s only here
Give in to love
Or live in fear
No other path
No other way
No day but today…”
P.S. Best of luck, Laura; and the rest of you travelers.
P.P.S. Karen received both of her Moderna Covid-19 vaccination injections with no ill effect! I’m still awaiting mine.