Day +3696: When the world is making promises that it can’t keep…

Jan 13th, 2021 by

“…Breathe out, breathe in, breathe out again
When the road you’re on is longer
than you ever thought you’d go.
You’re always on the mend.
Breathe out, breathe in, breathe out again.

“That weight on your shoulder is worse when you’re older
The lines that you’ve drawn will wear thin
When all that’s inside you is screaming for rescue
Breathe out again….”

1/13/2021: Happy New Year everyone! My blood counts are looking good, getting very close to normal. The reds are a bit lazy but getting there. I’m on day 3 of my 4th (25th) Vidaza cycle – tired, whiny, itchy, bitchy. Last week, I felt fantastic, better than in ages. Such is the nature of chemotherapy; it knocks you down before it builds you up. This is the same drug I had for 11 cycles pre-transplant and 10 more afterwards but it’s hitting me much harder now, both physically and mentally. Today’s lyrics resonate. Can you identify the song and artist?

I had a good visit with Dr. Bahrani today. He’s extremely easy to talk to. I asked him why, when I’m still 97+% donor and the abnormal clone is so small, my blood counts dropped so much. He replied, “That is a great question. It’s a big mystery, very odd. I have no idea.” Ever the outlier. I also, for the first time since relapse, discussed my thoughts that my prognosis is poor, given the state of my cytogenetics. He’s always been willing to guess at the best case/worst case when I ask but today he simply said that this time is so different we really can’t make any predictions. He thinks Dr. J’s plan for six chemo cycles in hopes of gaining a durable remission with the help of my chronic GvHD (graft versus host disease) is viable.

My next bone marrow biopsy (BMB) is scheduled for February 1; difficult to believe four months have passed since my last. To me it seems pointless at this juncture. The Vidaza is obviously working, as evidenced by my improved blood counts, and at least two more cycles are planned. However, Dr. B says the counts may or may not be indicative of remission; only a BMB will provide that information. If I’m not in remission, other treatments need to be considered sooner. So, breathe out again and see how everything unfolds.

Until next month…

Cheers,
Karen

Day +3684: I hear babies cry…

Jan 1st, 2021 by

“…I watch them grow
They’ll learn much more
Than I’ll never know
And I think to myself
What a wonderful world…”

Happy New Year! Welcome 2021.

Yes, it is a wonderful world; 2020 was a challenge, true –
personally and globally… Karen’s relapse. Covid. RBG. Vidaza. Politics. TP. Shooting. Looting. THC, Birdseed and Raccoon food (truly a first world problem)- People? Let ’em eat cake; Masks, Isolation, and the Quest of Vaccines, Normality, Predictability.

… and Tuesday is just a day unless the paramedics are hauling one to the ER with sirens blaring (avoided that one in 2020) – see a wonderful world, and better then 2019 – Perspective.

… and 2020 was just a year – one is alive, enjoy what you can while you can
…true … easy to say …

So, the picture of the Wonderful World of 2020 might have been painted in the style of Picasso; the colors a bit harsh and the edges of reality a bit skewed – ah, but priceless.

2021 – Ah a new normal; ah ….all you travelers know new normals well. Fingers crossed for you Laura.

Karen’s treatment could be better – red counts and energy levels are sluggish, degree of nausea and spasms crest the surface of issues.

The communication with Hopkins could be better, the treatment approach a bit better defined. Oh, yes going for six cycles of chemo and then the graft versus host will override the MDS (code word cancer), sounds nice, hopeful; and the patient was accidentally informed of this plan. Oh, let’s do another bone marrow biopsy.

The chemo could be better, not talking the genetic level – just a simple change in protocol from two shots in the gut a day to three and wow running out of real estate and each shot reignites the injection sites of previous shot – chemical sunburn.
Well kid you’re ten years older — true, and ever thankful for reaching that… but, call it selfishness ready for ten or twenty more … fate.

Dr. Ashkan Barani (UMMC) at least is a bright spot.

“….But if the world was ending
You’d come over, right?
You’d come over and you’d stay the night
Would you love me for the hell of it?
All our fears would be irrelevant…”

So, the new normal will be the rule of the day. It encapsulates all dreams, hopes, fears and the meaning and quality of life. Individualistic as that is.

2021 will not magically change the ‘wonderful world’; it is changed at the micro level of human existence on how we choose to face the day to day and how we treat ourselves, our family, friends and probably, most importantly, the strangers one only meets once. Probably why we are cat people.

Karen chooses to live her life, no regrets, no bucket list, or fairy tale might have beens.
Not easy, but….

“… A tame and toothless tabby can’t produce a lion’s roar
And I can’t help being frightened on these midnight afternoons
When I ask the loaded questions — Why does winter come so soon? …”

There only was one choice – live your life, each moment that is given. Things will change, not necessarily better, nor what did not kill you will make you stronger … Just the new normal after the shock of moment – she / they / we deal with it.

Enjoy your travels on the edge of reality… for …. well… figure it out….

Happy Fucking New Year…

….but, even so it is a Wonderful World.

Cheers,
Michael

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.