Day +3775: This is for my outliers…

Apr 1st, 2021 by

”…this is for my people.
Living on the fringes,
trying to figure out how to mend this
Desire to really thrive
while trying to improvise…”

4/1/2021: I had a surprisingly good meeting with my transplant doctor at Johns Hopkins today. It’s my first visit in 18 months – all of our communication has been via email and lab results.

He began with telling me how good I look and the pronouncement that because I relapsed later than any patient he’d ever seen, we’re in uncharted territory. I think he said something about being in “no man’s land” – I can’t remember his exact words. Imagine that, me an outlier. He confirmed that my blood counts look great and that I’m in remission; my chimerism is back up to 100%. All excellent news! I’ll probably relapse again eventually but I might not. Because my marrow is a hundred percent donor again, I might be cured. “We really don’t know.”

I basically have three options for the path forward:

  1. Donor lymphocyte infusion (DLI)
  2. Continuing Vidaza treatments and monitoring counts, DLI if relapse recurs
  3. Discontinuing Vidaza and closely monitoring chimerism and blood counts, resuming Vidaza and/or DLI if relapse recurs

He said he thinks I’m well informed and intelligent enough to decide for myself which way to go but if he were deciding for himself, he’d go with option three because his philosophy is simply to do no harm. He doesn’t think continued Vidaza treatments at this time would offer a better prognosis than resuming them as needed. If I eventually have a DLI, I’ll probably get GvHD but in that case, there are now better drugs to treat it than when I had my transplant.

My current plan is to watch and wait with regular exams and labs. I’ll see my hematologist monthly and see my transplant doctor again in three months. Chimerism can be checked with a blood test. I asked about his threshold to determine relapse. He said now that we know what’s wrong, any reduction in counts or chimerism will be promptly addressed. The diagnostic delays over the past year occurred because relapse at this stage was practically unheard of; it was unthinkable. There were so many other more likely possibilities to explore.

And so the journey continues…remember, regarding our blog, no news is good news. Don’t forget to name that tune!

xoxo,
Karen

p.s. I’m adding chimerism and DLI informational links to the sidebar for further reading.

Day +3759: Tell me, why’d you have to go and get me so constipated?

Mar 16th, 2021 by

”’Cause right now I’d do anything to just get my bowels evacuated.
In the bathroom.
I sit and I wait and I strain and I sweat and I clench and I feel the pain.
Oh, Should I take laxatives of get my colon irrigated?”

3/16/2021: First, a big thank you to Michael for writing last week’s blog after my telling him, “I just don’t feel up to writing – I’ll do an update next week when I can be more positive and upbeat instead of whining and complaining.” There is nothing fun about chemo but at least he’s generally entertaining even when writing about bad stuff. Little did I know my attitude would continue spiraling downward. TMI warning: you may want to jump ahead to otolaryngology.

There are things I don’t care to discuss and typically no one wants to hear about – politics, religion, and the “big C”- no, not cancer…CONSTIPATION. After days of pure misery and consuming a myriad of pills, potions, powders, fibers, and oils, I experienced many disappointing bouts of intestinal cramping with mad dashes to the bathroom that brought to mind the old toilet graffiti: “Here I sit broken hearted, had to shit but only farted….” Then when the desired moment finally arrived at 1 a.m. Monday, I sadly didn’t get there quite fast enough. And then as I sat on the commode with a huge feeling of relief, I vomited, so suddenly and unexpectedly that my entire undigested dinner landed on my feet as well as on the cat dishes, a couple of rugs, and the side of the bathtub. Now that I’ve said way too much already, I’ll end this sad tale by saying Michael truly deserves sainthood after taking care of me and my huge mess.

”When the dog bites, when the bee stings, when I’m feeling sad,
I simply remember my favorite things and then I don’t feel so bad…”

Moving right along, you may recall that I sometimes lightheartedly refer to my Vidaza injection sites as “bee stings.” This photo gives you an idea of what I mean (the spots look worse in person). Now imagine having 15 of these over a five day period every month plus having the prior month’s sites reawakened with the new shots. The injections themselves aren’t bad but the aftereffects can be miserable, akin to being stung by a swarm of hornets. Fortunately, I’ve learned that prophylactic Claritin on treatment days helps bring the overall itching down to a tolerable level. I was also taking oral Benadryl at night but it seemed to exacerbate the constipation issues as well as giving me an antihistamine hangover; Benadryl cream offers some relief. Overall itching continues into the middle of the next week post treatment and gradually disappears once the sites start peeling.

Given the aforementioned woes, along with the general malaise that Michael mentioned and a very painful ulcer on the side of my tongue, I’m very happy and grateful to report that because my leukemia is in remission again, I get to take a break from chemo for as long as my monthly blood counts remain stable. No one, including my doctors, can predict how long this will last but we are focusing on the positive and hoping for a lengthy respite, be it measured in months or possibly years.

Otolaryngology

”And my words don’t sound like they should
So soft then they slowly turn to wood
I look down to only remember
I got splinters on every single finger from
Holding back my tongue…”

Wow, it was a bit of a challenge finding a tongue song that wasn’t about oral sex!

After a couple of postponements due to Covid-19 and weather, I finally saw my otolaryngologist for my annual checkup today. It’s always a pleasure seeing her despite the minor discomfort of the through the nose scope to check my throat and base of tongue (which looked great). Despite our rocky start, she and I bonded years ago over our mutual cat craziness. Since my base of tongue surgery in 2012, the left side of my oral tongue has developed a bulge. While examining the ulcer last week, I noted a more pronounced bump. After much poking, probing, and pinching, Dr. G pronounced the lump was soft and not concerning, most likely a swollen vein that required no intervention. She said I could get an MRI if it would offer me more peace of mind but she felt confident that there’s no sign of malignancy. I declined the MRI for now with the assurance I could reconsider at any time if anything changes. I might since she was able to feel some nodes in my neck today that she said could be related to my MDS/treatments. Barring any other issues, I’ll see her again in a year.

Until next time…remember no news means good news if we fail to post. Boring is good. Life is great!

xoxo,
Karen

p.s. Don’t forget to identify three songs this post.

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…”

Cheers,
Michael

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.

xoxo,
Karen