Day +3615: It’s astounding, time is fleeting…

“… Madness takes its toll
But listen closely, not for very much longer
I’ve got to keep control …”

Chemo Cycle One completed – well, the doses of tactical poison have been injected into Karen’s stomach region. She calls it bee stings; well, maybe bloody Yellow Jackets – certainly ain’t no honey there. I simply tend to think of it similar to rabies treatments – well, the outcome is just as iffy for the moment. (Note 2: 93.6% of you noble readers just ran off for cover – that’s ok). The other 21 Vidaza cycles, both prior and post transplant, are like primordial swamp water oozing under the bridge, not totally irrelevant as the marvels of modern medicine mix in the minefield of human genetics spiked by a legacy of potential traps doors left by our friends Fludarabine, Busulfan and Cyclophosphamide (Cytoxan) during the transplant. Yes, the bleeding edge of science has advanced in phenomenal ways, but at times it also makes the gaps in the knowledge that much more frightening.

Me (Confined to parking lot) – “How are today’s counts?”
Mausi (Karen) – “CBC in – dropped a bit but not horribly”
Me – Scans text. Nucleated RBC 2.3 to 3.9. WTF a 58% increase in the “bad”.
Me – “Ok” Math pukes are like that.

The patient is ok. Joy be to the new normal of the day. Hmmm… really..?

“…It’s Okay Not To Be Okay
Feeling Like Your Life’s An Illusion
And Lately You’re Secluded
Thinking You’ll Never Get Your Chance…”

The water tastes metallic. Food – well, we ain’t mixin’ the force feeding milk / ice cream concoctions; but none of the food is right either or really appetizing. Energy running at a fantastic Two on a scale of Ten and Endurance controlled by a moment by moment by random number generator (obtuse?) – well it evaporates randomly; (better?) Sleep sucks as the all the joys, aches, pains and spasms of the Graft versus Host Disease issues haven’t disappeared just because of the relapse.
Relapse … Relapse… Relapse …Relapse … (Note 3: George Carlin could have had a 30 minute monolog on that word choice ( He was that comedian who did the thing about 7 words you couldn’t say on television in ancient times ) …Relapse …Fucking CANCER ..ok, I feel better.

Wait, won’t next week – week two be better; well actually probably worse. Counts tend to fall before rebounding. Bet on week three and four before the cycle repeats.

“… And I can’t help being frightened on these midnight afternoons
When I ask the loaded questions — Why does winter come so soon?…”

Quality of Life … well, kids that only means something to each one of us in our own terms. No generic application of standards will ever suffice or define this adequately. The drawback of entering a blog at the point of transplant, is that it glosses over the hard decisions of prior months – during that chemo phase. Timewarp. Is Vidaza working? How long will it work? The transplant can kill you, the transplant can cure you, where is a transplant in the equation now …wait, wait, – let’s give Vidaza a shot. TBD. The hematologist ponders which is a phenomenal plus; since the transplant team is MIA at this time. It’s just a nightmare go back to sleep love.

The patient is ok. Joy be to the new normal of the day. Hmmm… really..?

“….Yeah, the paint could peel, the glass could shatter
Let it break ’cause you and I remain the same
When there ain’t a crack in the foundation
Baby, I know any storm we’re facing…”

Moment by moment, step by step she perseveres. A smile for the staff.
Pool the energy together …let the phone ring an extra moment, then answer with the friendly “Hello World”.

Hide the tears, hide the fears, never show the toll on the body or the soul.

The patient is ok. Joy be to the new normal of the day. Hmmm… so….?

“….Well, I got a brand new pair of roller skates
You got a brand new key
I think that we should get together and try them out you see…”

So, if the mood or flavor of each blog eludes you, The key is often in the the song lyrics or title of the song that accent each section. Sometimes a song does get repeated. Live with it.

The patient is ok. Joy be to the new normal of the day.
….and she will make this entry pretty and correct, too.

Michael (Note 1: The cheery happy go lucky one – but you already knew this)
EOT

4 Comments so far

  1. Karen is the very Cherry Happy Go Lucky One. Everyone loves to be around her! Sending hugs to you both your way. <3

    Brand New Key-Melanie
    Finally one I recognize. 🙂

  2. Cathy S Johnson on October 24th, 2020 at 12:56 pm
  3. Love to you both.

  4. Laura on October 24th, 2020 at 3:51 pm
  5. Crap and more crap!
    Melanie brand new key
    Glad you’re doing wellish?!
    Crap. So sorry you’re going through this again. Crap!!!!!

  6. Dana hinchliff on October 24th, 2020 at 4:49 pm
  7. Hugs to you Karen.

  8. Lori on October 25th, 2020 at 10:42 am

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