Year +10: Hello good morning happy day…

Nov 30th, 2020 by

“The sun is creeping around my window
Hello good morning happy day
I got to get my head up off my pillow…”

We should be celebrating 10 years cancer free and a magical 10th rebirthday,
We should be celebrating Mary Lou for her gift of life!
We should be on the West Coast eating fresh pizza and sipping cherry wine,
We should be high as a kite enjoying the simple things of the day to day.

“And though your dreams may toss and turn you now
They will vanish away like your daddy’s best jeans
Denim Blue fading up to the sky…”

The dreams are not exactly busted, but the MDS/AML relapse is certainly a curve ball thrown in from far left field for a strike. Compound that with a world out of kilter due to Covid coupled with the usual joys of Chemo and GvHD, which are vying and trying to make the little joys of the day to day evaporate. At this moment, Jake is being examined by the Vet for urinary issues … just a touch of stress – like a little needed accent on the sprinkles of a rainy day.

“Black cats and voodoo dolls
I feel a premonition
That girl’s gonna make me fall
She’s into new sensations…”

We’re watching the rainbow over our vets’ parking lot.

…So….

We need to make a few little adjustments for the big rebirthday.
Replace pizza with carry-out Indian food. Replace cherry wine with the pedialyte and cran-lime juice elixir. Pretend the comfy recliners are in Spokane. No need to change a thing about Mary Lou, because she is perfect and always in our hearts. Pick up Jake and continue this la vida loca journey and yes…

Celebrate the magical Rebirthday!

Happy Rebirthday Mausi! …. ten years – who could have imagined!

Thank you Mary Lou!

Thank you to all the medical and support staff living Tuesdays seven days a week!

Thank you to our friends and families for their support!

Best Wishes to all you other travelers!

~Michael

Note: Jake is accepting donations of urinary-healthy caviar and Strasbourg pie paired with artesian water (stirred [filtered] not shaken, please).

Day +3649: Give me light, Give me life…

Nov 27th, 2020 by

”Give me love
Give me love
Give me peace on earth
Give me light
Give me life
Keep me free from birth
Give me hope
Help me cope, with this heavy load…”

11/27/2020: My lab results are encouraging today, metabolics great as always and CBC values trending much as they did nearly 11 years ago after my first two cycles of Vidaza. Platelets and white blood count are back within normal range. Red blood count, hemoglobin, and hematocrit are down but not dramatically so. It appears the treatments may be starting to work! I was more afraid than I care to admit that they wouldn’t – there are no guarantees. This is the most hopeful news I’ve had in ages, and I feel positively giddy. Not a cure but currency to buy more time. Perspective is everything.

Fingers crossed. I’ll let you know my next results December 14.

xoxo,
Karen

p.s. As always, I ponder the science, and have come to the conclusion that differing rates of noticeable change, with red cells being the slowest, are not surprising if you consider their half-lives (the length of time they survive in the bloodstream): Platelets 5-12 days, white cells 13-20 days, and red cells ~120 days.

p.p.s. Today’s tag line is from a song already used on Day +100 but I couldn’t think of any more appropriate for this déjà vu journey.

Day +3641: It comes and goes in waves…

Nov 19th, 2020 by

“It always does, always does
We watch as our young hearts fade
Into the flood, into the flood…

11/29/2020: Vidaza cycle 2 (or 23), day 4 of 5. This treatment week has been difficult, nothing specific or dramatic but a general feeling of fatigue and physical unwellness. This, in turn, has affected my mood.

However, Dr. B says I’m doing well, and I trust him. My blood counts dropped a little more since last month but that’s to be expected until the chemo starts working, hopefully by next month. My lungs sound clear, and my oxygen levels are good. No weight loss, bruising, or mouth sores. Michael takes great care of me.

With my white counts on the low end and Covid on the upswing, we’re keeping to ourselves for the holidays. Wishing all of you a safe and healthy Thanksgiving! Please be careful. Let’s all look forward to better times ahead.

xoxo,
Karen

Day +3619: There’s been a lot of pressure building…

Oct 28th, 2020 by

”…Clouds dark and static
From the silence you might never tell
But we’re in for a drama
Sci-clone…”

10/28/2020: I finally updated the Cytogenetics page today. The image above is a normal female human karyotype. More than three or four abnormalities are considered complex. My nine are discussed on the updated page. Complex karyotype indeed! 😱

Tag Line Update

Also, it’s been awhile since I did a tag line update. Except for the few otherwise noted, all remained unidentified by our readers.

  • Day +3400: Tag You’re It by Melanie Martinez (2015)
  • Day +3480: Back on the Chain Gang by the Pretenders (1982)
  • Day +3506: Insensitive by Jann Arden (1994)
    …Limbo Rock by Chubby Checker (1962)
    …Beds are Burning by Midnight Oil (1987)
  • Day +3520: One Less Day (Dying Young) by Rob Thomas (2019)
    …Doctor, Doctor by The Who (1967)
  • Day +3572: Free Fallin’ by Tom Petty (1989) IDed by Heather
    …Hotel California by the Eagles (1977) IDed by Heather
    …Little Boxes by Malvina Reynolds (1962) partial credit to Heather who recognized it as used for the Weeds theme song
    …Blowin’ in the Wind by Bob Dylan (1962)IDed by Heather
  • Day +3592: Gloom Despair and Aginy on Me by Buck Owens (1969)
    …Heaven Can Wait by Meat Loaf (1977)
    …Brother by NEEDTOBREATHE (2015)
    …Baltimore by Randy Newman (1977)
    …The Name of the Game by ABBA (1977)
  • Day +3594: I know you got the good feelin’… – Good Feeling by Flo Rida (2011) IDed by Dave
  • Day +3603: Just another Day by Oingo Boingo (1985) IDed by Dave
  • Poison by With Confidence (2017)
  • Day +3612: Poison by Beyoncé (2009)
    …He Ain’t Heavy, He’s My Brother by Kelly Gordon (1969)
    …Just Give Me A Reason by P!nk (2013)
  • Day +3615: The Time Warp from Rocky Horror Picture Show (1973)
    …OK Not to be OK by Marshmello and Demi Lovato (2020)
    …There Only Was One Choice by Harry Chapin (1977)
    …The Bones by Maren Morris (2019)
    …Brand New Key by Melanie (1971) IDed by Cathy and Dana

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

Oct 24th, 2020 by

“… 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