Day +3666: And I been waitin’ for some good news, good news…

Dec 14th, 2020 by

” I’m just tryna get my footloose, footloose
And we been dealin’ with the wrong things so long
The smallest things can make it right, that’s why we hold on
For some good news…”

12/14/2020: It’s Vidaza week again already, cycle 3 (or 24), day 1 of 5. A quick update – my blood counts are definitely headed in the right direction. Red blood count, hematocrit, and hemoglobin are still below normal but improved and there are far fewer nucleated red blood cells; platelets are solidly in the high normal range; white counts are in normal range and stable.

Wishing you the safest and happiest of holidays and hoping 2021 is filled with good news for us all.

xoxo,
Karen

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