Day +3754: And a woman needs a man…

Mar 11th, 2021 by

“… Like a fish needs a bicycle
When you’re tryin’ to throw your arms around the world…”

This is an R&R post; in this world, R&R is Relapse & Remission.

Karen is one day away from completing chemo cycle six or in the aggregate cycle 27.

Her yesterday just sucked, a general malaise permeated her core and spirit. After chemo, she managed to collapse on the sofa. As the blood counts started their dive over the last year+ and relapse turned from fear to reality, we began to speculate about the possible treatment options. To my disappointment, the communications with our Hopkins team seemed tangential at best. The clear plan of attack remained formulated in the cranium of our transplant lead only; however, fortune is with Karen in the form of her hematologist who bridged the gaps. The plan was chemo, Vidaza (azacitidine) injections again. If you’re going to have to take your poison, take the devil you know; the whole process, like riding a bicycle, familiar. Or in line with the mantra of “what doesn’t kill you makes you stronger” – ahem, that’s just bullshit – well, at least bullshit can be good for plants.

Sorry …ok, back on track …Karen’s body responded well to the chemo boost – today’s blood work was good! For perspective, prior to her transplant, she had been reluctant to quit Vidaza and commit to a potentially fatal procedure. Chemo week hit hard but predictable / day-to-day livable one might say, week 2 was a little unsteady, but weeks 3 and 4 were good, as in normal people good. From the first new cycle, Karen privately asked, “Do you remember it hitting me this hard?” Aside from all the usual joys of chemo, nausea, constipation, pulse and bp irregularities – ( do you really want the list? ), the issues from the graft versus host didn’t take a back seat to wait and see what would happen. Immaterial of time, Karen’s body is different from the immediate post transplant self of 10 years ago.

Houston – we have ignition.
Houston – we have lift off – oh hell a flame out!

One of the peculiarities of these rounds of chemo is not the switch from two injections to three directly, but it did factor into the interactions. The three daily injections require more body territory, the belly area is supplemented with launch sites in the legs and arms. The fun increased as Karen exhibited an allergic reaction to the Vidaza. The injection had always ‘sunburned’ the top layer of skin in a half dollar size areas; however, now the injection site pain is complemented by general itching over most of her body. Benadryl and Claritin to the rescue and antihistamine hangover as another added present. The compounding or confounding thing was that each day’s injection re-ignited the previous injection sites – even those from the prior month. Vidaza as a lifetime treatment plan was going to seriously fuck with the quality of life.

“… I need some good news, baby
Feels like the world’s gone crazy
Give me some good news, baby…”

Blood counts are good. Metabolics mostly behaving. Bone-marrow biopsy mostly normal.

Remission! Great. Super. Wonderful. Oh, the plan was to stop after six cycles of chemo and see what the blood production will roll out? Ok. Hell, stopping Vidaza even better!

“…A Fiddler on the roof. Sounds crazy, no?…”

So, Karen and Dr. B did the paper, scissors, rock equivalent to come up with a schedule of monthly monitoring. The thing hard for me to grasp and come to terms with is Remission is not Cured. Are those blasts (immature blood cells) hiding out? Could we do weekly bloodwork? Well, easy for me – all I do is drive.

So, the tell tale heart will pulse us in two months…. Next month, the counts will still be under the influence of chemo.

“…No straight lines make up my life;
And all my roads have bends;
There’s no clear-cut beginnings;
And so far no dead-ends…”

Well see – you probably just should have read the song lyrics. Dropped five in this blog so really didn’t have much to say. So, what to do in the meantime? Waiting on that second draw? Well….

“…There’s only now
There’s only here
Give in to love
Or live in fear
No other path
No other way
No day but today…”


P.S. Best of luck, Laura; and the rest of you travelers.

P.P.S. Karen received both of her Moderna Covid-19 vaccination injections with no ill effect! I’m still awaiting mine.

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.


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…