Day +4950: Those were the days, my friend…

Sep 23rd, 2021 by

“….We thought they’d never end
We’d sing and dance forever and a day
We’d live the life we choose
We’d fight and never lose
Those were the days…”

In the world of the atomic clock, time is precise to the point of determining leap seconds to keep the electronic world synchronized with a tired earth which dares to alter the length of a day without asking us humans for consent. In the world of humans, time is more fluid – joyous events all pass in a flash, hence our memories seem to be a bit fuzzy. Continuing with this fuzzy logic, the more difficult moments seem to possess a unique time quality, for example: Consider, due frugality or heroics, one decides to forgo that novocaine shot and that nanosecond when the whirling drill assaults the enamel of the tooth and reactivates that ‘dead’ nerve. Well eons pass – it might be because our body’s nervous system is trying to chisel into cortex of brain “don’t do that again stupid” … but ah, we forgot so easily.

An eon ago (yesterday afternoon), Karen saw her hematologist. Blood and urine were collected and processed. Discussions both light and dark were had with a candor and honesty that makes the possibility of the worst outcomes be somehow acceptable. Relax, we ain’t there yet, but the mind tends to wander down the dark roads first. The blood counts were depressed further, but are still hovering above the transfusion threshold. The next chemo cycle is locked and loaded on the calendar. So how is Karen you ask?

“…You know I’m [feel] bad, I’m [feel] bad, you know it
(Bad, bad, really, really bad)..”

We expect the week after chemo to be sucky as a matter principle; however, Karen has been down and out for over two months. The level of bad seems
disproportional to the current state of her counts. There are no clear answers, the havoc the cancer is causing in her body seems to exponentially aggravated all the ills and side effects. Not a medical opinion. So, if you’ve heard of a side effect from chemo – well, let’s just say we got check marks by it. The ray of sunshine is measured in perceptions, quality of life sucks right now, but nothing has driven things to the point of dancing in the ER.

“…I need some good news, baby
Feels like the world’s gone crazy
Give me some good news, baby
Give it to me, give it to me…”

Don’t we all.
Right now it is eon by eon. Hopefully, the Vidaza will do its job.
When? TBD. Time in drag mode.

Michael

P.S. Doctor’s office called, urinary tract infection, Ciprofloxicin ordered from pharmacy.

Day +3945: Well, it’s alright, if you live the life you please…

Sep 18th, 2021 by

“Well, it’s alright, doin’ the best you can…”

So, for Saturday morning fun we went to Hopkins today. Rounds complete, the battery of 15 shots of chemo for the week is done. Nausea, spams, and general pain complicate everything. Hopkins on a weekend is a bit apocalyptic. Empty. Dead. A tad spooky kinda in line with the chemo, or maybe just my mood.

The trip down to and from city wears Karen out.
When we got home, she dropped on the bed.

“..Well, that’s just fine, that’s just fine
You’ve got to believe
And I don’t know, I don’t know
What I believe anymore ..”

Yesterday’s blood counts were down a bit more; however no transfusion required so far. Vidaza will impact the counts further. Waiting. Lots of waiting. First week after chemo is usually the most difficult, peaking around day 10. Hematology is scheduled for Wednesday at Upper Chesapeake. We are hoping the counts don’t bottom out. No guarantees, so day by day.

“… Eat it! Eat it!
If it’s getting cold, reheat it
Have a big dinner
Have a light snack
If you don’t like it, you can’t send it back
Just eat it! Eat it! …”

On the roulette wheel of side effects and complications, we seem to have landed again on red. Karen said on the ride in today, that of everything we have tried the cold Pedialyte concoction tasted the least obnoxious. Alarm! Alarm! Ok, that is kinda like taking a scoop of latrine water, throw in some of last winter’s ice melt from side of driveway, and serve it in a rusty tin can for coloring and texture, and chill for your pleasure and personal delight. Going to try and revive the ‘shake’ mixture. Thank you for all the immediate suggestion of foods, potions, and brews to try; however, her flavor sensitivity is pretty all encompassing.

Don’t worry, I didn’t go completely to the dark side. Pulled three songs from the well.
Life, moment by moment.
Michael

Day +3941: Ode to Azacitidine…

Sep 14th, 2021 by

”You used to be the best
To make life be life to me
And I hope that you’re still out there
And you’re like you used to be
We’ll have ourselves a time

And we’ll dance ’til the morning sun
And we’ll let the good times come in
And we won’t stop ’til we’re done …”

Injection 1 of 3 for the day.

9/14/2021: Day 1, Cycle 1 [28]. Same drug, same protocols, new location. My prior 27 cycles of Vidaza were all administered at Upper Chesapeake/University of Maryland. I’m being treated at Johns Hopkins this week so I could get started a week earlier. In addition to longer, earlier travel, we spent a lot more time waiting because my blood work needed to be done a couple of hours before to assure all was good to go. Everything went well despite my counts dropping even further since last week. My biopsy sites are much less sore today, good thing as it’s time to back off the Tylenol – ALP at 122 is a bit high. I had a good nap when we got home. It will probably be six weeks or more before I know if the Vidaza is working again. Fingers crossed!

xoxo, Karen

Day +3938: It seems like I’ve been here before…

Sep 11th, 2021 by

“…I can’t remember when
But I got this funny feeling
That I’ll be back once again
There’s 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…”

9/11/2021: As Michael indicated, Thursday’s biopsy did not go well. I was all set to contribute extra marrow for an ongoing MDS study but my marrow is so fibrotic that they weren’t able to get more than a few spicules despite multiple tries on both sides of my iliac crest, not even enough for a proper analysis. Once the sedation wore off (halfway home), I was in extreme pain that continued through yesterday from all the poking around.

My new/old doctor is very much on top of things and coordinated with pathology to get as much info as quickly as she could from the biopsy samples of bone, peripheral blood, and limited marrow. This is what she emailed late last night after I’d gone to bed:

I just received the e-mail from my pathology colleague and preliminary the flow cytometry shows 0.6% blasts with atypical phenotype. Further, as promised, I requested the cytogenetic lab to do FISH studies ASAP and it revealed 3.5% cells carrying del 5q which was original abnormality in your bone marrow. Although this number is low, all of these findings are indicative of early disease relapse. The exact extent of relapse in the marrow we will not know until we have final biopsy results and also I would like to know if CG/NGS studies will show something this time, but based on the current findings and the drop in your platelets, I would feel Ok with starting therapy.
 
Sorry for bringing you this poor news but I know that you wanted to know the results ASAP. I usually like to see pt and communicate results.

When I didn’t respond, she called this morning to discuss her findings thus far and to let me know I can restart Vidaza next week. I was surprised to hear from her on a weekend but she understands the mental stress of waiting and wondering. I know I’m in good hands now. She’s as smart and skilled as she is empathetic.

Although the news is not good by any stretch of the imagination, once again we have a known path to follow with additional branches of donor lymphocyte infusion (DLI) or possibly another transplant further down the line.

The tag line is a repeat but it certainly fits.

xoxo, Karen

Day +3936: And drill, ye tarriers, drill

Sep 9th, 2021 by

” And blast, and fire.”

11:30 Karen is trying to rest after her early morning run to Johns Hopkins for blood work and the bone marrow biopsy.

07:05 – Blood counts were depressed a little more, which in itself is depressing. They used Ultrasound to find a ‘good’ vein. Details later.

07:30ish – Although she did receive conscious sedation, the biopsy proved problematic as the tech had to drill into the bone and butt at a second location. We are hoping that a good enough sample was extracted. The dressing looks like a yard of duct tape.

” The waiting is the hardest part
Every day you get one more yard
You take it on faith, you take it to the heart
The waiting is the hardest part” 

So, we are back to the waiting game once more. On average, 7 to 10 days for cytogenetics to come back.

” Y’all come back now y-hear ”

To be continued….