Day +3732: All the trauma’s in remission…

Feb 17th, 2021 by

” No, I don’t need permission
Feels so, feels so, feels so good to dance again
Feels so, feels so, feels so good to dance again…”

2/17/2021: At 9:44 p.m. I received a lovely one line email from my oncology nurse practitioner:

”Cytogenetics were normal.”

Celebratory ice cream with sprinkles followed immediately. My leukemia is in remission. 🤗

Day +3732: The waiting is the hardest part…

Feb 17th, 2021 by

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

2/17/2021: My fifth (26th) Vidaza (azacitidine) cycle was last week, pretty much a repeat of the previous four. I’m still weak and itchy all over but otherwise feeling great as my blood counts continue to improve. My red blood count is still slightly low but white count, hematocrit, and hemoglobin in normal range and platelets high. We went for a short walk yesterday, our first in a long time. I should be doing more but procrastination, laziness, and newfound lack of tolerance for cold have kept me indoors.

After more than two weeks, I’m still awaiting cytogenetic results from my bone marrow biopsy. I’ve never had to wait this long. I emailed the CRNP yesterday but received no reply. That’s unusual for her. With each passing day, my mind conjures new possibilities. Did they get an insufficient sample for analysis? Did the results get misplaced? Are the results unfavorable and she doesn’t want to share them before reviewing with Dr. J? Are they no longer interested in me as a patient because of my poor prognosis?

Only time will tell…I’ll post more when I know more.

xoxo,
Karen

Day +3717: Let the storm rage on…

Feb 2nd, 2021 by

”The cold never bothered me anyway
It’s funny how some distance
Makes everything seem small
And the fears that once controlled me
Can’t get to me at all…”


2/1/2021: Let it snow! How many times have I uttered that controversial phrase? I love snow. We don’t get a bunch in Maryland, some years only a few dustings that barely cover the grass, others a bit more. Thus, when I heard Friday a “major storm” was headed our way for the weekend, I was excited – until I looked at the actual forecast. Snow, wintery mix (freezing rain) Sunday morning through Tuesday morning. Damn! My bone marrow biopsy that had already been delayed a month due to a timing conflict with chemo, was supposed to happen Monday afternoon at Johns Hopkins.

I called Hopkins Monday morning to confirm my appointment and discovered it was still on but mistakenly slotted without the sedation I need to control my random muscle spasms during the procedure; next sedation appointment was not available before next week when I’m back at chemo again. I made a quick decision to try proceeding without sedation but it turned out I was able to have it after all due to other patients cancelling with the snow. Things have a way of working out. Everything went smoothly, no sciatic nerve hits this time. I had a bad bout with muscle spasms last night, probably unrelated to the procedure, as well as some bleeding when the bandage fell off prematurely. Aside from being very stiff and sore today, all is good. I should have results in about a week and will write more then.

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 (azacitidine) 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 Bahrani (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