Day +4118: Singing from heartache from the pain…

“Taking my message from the veins
Speaking my lesson from the brain
Seeing the beauty through the…

Pain!…”

3/10/2022: The rescheduled Chemo Cycle 7 (34) started on Monday. Karen and I both had mixed emotions about it. Karen tries to schedule for late afternoon for two practical reasons: First, we hate mornings! Second, late afternoon appointments don’t tend to mess with an already fragile eating schedule. The trade-off is getting to participate in I-95 rush hour in the evenings.

However, when we got there, the waiting area was nearly vacant and she was quickly called back to phlebotomy for her draw. She returned as rapidly, still applying pressure to the draw site. She commented on how easy the draw was and started to lift her fingers — the pad was saturated with blood and seeping between her fingers. Oops. She got up and headed back to phlebotomy.

The trepidations of the week’s delay raced through my mind. Karen and Dr. Gojo had postponed the chemo to see where the counts would be. We did not not expect that her bone marrow biopsy had acquired a good enough sample to provide a definitive status of the state of the disease. The previous counts dropping across the board did ignite a flurry of fears. So, Monday’s counts may not be pivotal in line of the treatment plan but they did carry a heavy emotional wallop. Did the platelets tank? No! Yay!

Bloodwork 28 Feb / 7 Mar / 11 Mar
White Blood Count: 1.85 / 2.31 / 2.21
ANC: 0.54 / 0.68 / 0.73
Red Blood Count: 2.24 / 2.21 / 2.84
Hemoglobin: 7.9 / 7.8 / 9.3
Hematocrit: 24.3 / 24.9 / 29.4
Platelets: 55 / 58 / 38
Blasts: 2%

Funny how quickly one’s perspective can be reordered. We have often commented on frustration with the perplexing or mixed nature of Karen’s blood counts (some up / some down). Well, mixed is a whole lot easier to deal with than a 100% downward trend.

In discussion with Karen, Dr. Gojo stated she believes Karen’s MDS is currently stable. This does not mean remission! Simply, the treatment and disease seem to be in a kind of equilibrium, neither driving the counts down too low nor providing any distinctive boosts. Dr. Gojo did order an infusion of red cells along with the start of the Vidaza cycle. We hoped the blood would help Karen’s shortness of breath and fatigue and generally make her feel better.

The two also discussed the addition of a second chemo drug to complement the Vidaza, Venetoclax. However, the drug was rejected by Medicare / Tricare insurance geniuses since its primary purpose is for Acute Myeloid Leukemia (AML) not MDS transitioning to AML. Medical expertise be damned. However, Hopkins is very proactive and immediately initiated the appeals process. We will save the rest of this topic for a later blog entry. The next topic with Dr. Gojo was pain management.

“…The pain is slowly creepin’
‘Til there’s nothing I can do
My body in a circle
And clouds fill up my eyes
Wait for it to kick in
So the hurt can be disguised….”

Aside from yielding little information, the biopsy (or more accurately, the biopsy site) ten days later, was still a major source of pain and discomfort, radiating from the pelvic region down Karen’s tailbone and leg. Her ability to stand and sit are severely restricted. She has been on a steady course of Tylenol every four hours, one Aleve a day and an Oxycodone to carry her through some of the night. Karen opted to wait until Friday’s blood draw (Chemo Day 5) to see if she can get a script of Celebrex or similar meds to add to the arsenal. The blood infusion did help with her breathing and fatigue, but no pain relief was to be garnered from it. The pain cycle is particularly troublesome since it spurs bouts of nausea, which kicks in weakness, increases fatigue, and kills the appetite. A platelet count of 50+ is important since it is the cutoff for the Aleve which seems to be most effective for the inflammation throughout Karen body and specifically bones. However, like all drugs, the body seems to adjust to the presence of all of the pain meds, and the duration of their effectiveness is steadily decreasing. Taking more Aleve simply is not an option with the state of the counts.

“…And then my head started to spin.
Well, I’m givin’ up. Don Pardo,
Just tell me now what I didn’t win,Yeah, yeah…”

Additionally, Chemo week always brings its predictable list of side effects to bear. Karen is on a daily dose of Claritin as she seems slightly allergic to the Vidaza. The daily treatments come with a pretreatment dose of Zofran for nausea which contributes a bit to constipation. The Miralax/prune juice cocktails are daily dietary supplements. Stool softeners (Colace) are coupled to the pain meds. All in all, it’s just balancing a dynamic mess – but what else can she do?

Quality of Life is currently defined by how often Karen can retreat to the comfort of her blue sofa.

Tomorrow, she will reach the end of this chemo cycle already. The big picture stuff seems to get blurred into the background of the struggles of the day to day. Karen’s bones seem to be extremely fibrotic. I think of it as scars. This makes getting a bone marrow sample very problematic. The lack of a good sample does not just mask the current status of the MDS, but also precludes some clinical trials from the picture. There is no good way to answer the ability of her bones to produce blood beyond the moment. So, the disease / treatment equilibrium is a good thing … not great, but good. There are no clear paths to address the fibrosis. Vidaza doesn’t seem to have failed. But, we are hoping for the next chemo cycle to be a two drug combo – TBD. Looking for a little edge.

She pushes herself every day. Some days are a lot harder. She is doing far better than last fall. She is not pessimistic – she just realizes how frail the balance of it all is. She does her best … can’t ask for more.

Looking for a better day …today ….

Love you Mausi!
Michael

3/11/2022: Addendum from Karen. Since I didn’t get this posted last night, I decided to add today’s update (Day +4119) here instead of in a new post. I updated Michael’s report above with today’s disappointing labs. The red cell transfusion on Monday gave a much needed boost to all red components, and ANC is up slightly; however, platelets took a big hit, down to 38, since Monday. Anything below 50 is bad news in general but particularly so because I have to stop taking Aleve. I thought my doctor or CRNP would write me a script for an alternative NSAID today but they didn’t. I was told to take Tylenol and Oxycodone for pain. The problem is they don’t work nearly as well, and oxy is extremely constipating. It’s been a hard week of ups and downs. I was in good spirits Monday and feeling a bit better after my transfusion. Tuesday, I felt way worse again, Wednesday slightly better, Thursday slightly worse. My biopsy site pain felt somewhat reduced earlier today but my mood is dark due to the platelet issues. I also came home to letters from both Medicare and Tricare that were not good news – the former showing I may owe $1000+ in deductibles for chemo and the latter reconfirming my denial of benefits for the additional chemo drug. Insurance companies are quite possibly the most evil entities on the face of the earth, benefitting from the hardships of others. Hopkins is still working on appeals for me. I guess that’s all for today. My next appointment is Wednesday for labs and nurse visit. Until then, I’m doing my best to stay positive.

xoxo, Karen

9 Comments:

  1. It is hard to come up with words. But we are so sorry you are suffering right now. You have an amazing spirit. Just know prayers and positive vibes are always being sent your way during this all consuming journey.

  2. I’m thinking of you and praying for relief. You are brave Karen.

  3. Sorry to hear the news about insurance. Such a pain. Speaking of pain, the first tagline is “Believer” by Imagine Dragons. One that I knew!

  4. IM HERE!!!!!!
    We’ve done it!!!! Just like Paul….I got back!!!
    And I’m taking the boy to his first concert. All of his following concerts will pale in comparison!
    And I know one of the songs!
    I lost on jeopardy Weird Al!
    I hated your posts! I wish I could make the insurance company pay all your bills and approve everything you need!
    That being said I can pie you maybe the 26th!

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