Day +4103: It’s 8 O’clock in Los Angeles…


“… It’s 9 O’clock in Denver…
It’s 10 O’clock in Chicago…
In Baltimore it’s 6:42…”


We attempted to smooth out the roller coaster ride with an ‘impromptu’ visit to Hopkins today. Well, Karen did email her doctor last night and this morning we were summoned to see her CRNP. They are responsive. We started the normal routine: bloodwork, doctor visit, treatment. At the vital signs point, this plan was interrupted when Karen mentioned running a fever. She was immediately banished to the Urgent Care Unit and tested for COVID. A swab and 20 minutes later – negative. Whew!

Ok, run down the list COVID Symptoms and overlay that to chemo / chemo side effects — but, they did the right thing.

After this, she moved across the hall and back to one the normal treatment rooms, she met with Meghan, her CRNP. What ensued, aside from the immediate wellness checks, was a discussion on muscle pain, spasms, nausea and the current cyclic nature of things. Karen seems to be an outlier in this area also, no surprise sadly. Erica, her treatment nurse, oversaw the administering of 1000ml of saline.

14 Feb / 23 Feb Blood Counts:

White Blood Count: 2.48 / 2.96
ANC: 0.81 / 0.98
Red Blood Count: 2.62 / 2.56
Hemoglobin: 9.1 / 8.9
Hematocrit: 28.3 / 27.1
Platelets: 80 / 52
Blasts: 0% /  2% 

We picked up a script at the Hopkins pharmacy and headed home.

“…Then we crawled into bed for some peace and quiet
But things weren’t peaceful and things weren’t quiet
Things were scary …”

It is easy to get lost or locked on the numbers. Trends can be very scary, as with the decline of the platelet count. On the plus side, Karen didn’t need any blood products nor have to start up prophylactic antibiotics. The reemergence of blasts (immature blood cells) in the blood leads the mind in a flash to the depths of despair. In the past, we commented how us humans tend to jump and latch onto the greatest fears. However, if Vidaza had failed everything would be diving.

In my simple mind, the conundrum is that blood work reflects what happened (results of the marrow blood production) not what is happening in the marrow. For that, Karen, her doctor and team need a good sample from the biopsy. This also is a source of major concern – due to the extent of the fibrosis in her bones, the score is 0 for 2 … hoping that ‘three times’ is the charm.

The saline didn’t quite abate the spasms, and Karen had to take more meds. An IV&V day – nope, you’re not supposed to understand that. At least Karen’s doctor ain’t Dr. House, unlike somebody we ran into at the pharmacy!

Things are a bit scary and uncertain right now. The sky ain’t falling, but the fog of confusion is thick (hey, working on applying for a job with Katie Perry).

“…Though nothing, nothing will keep us together
We can beat them forever and ever
Oh, we can be heroes just for one day…”

Friday: Still on track for the bone marrow biopsy. Looking for a lil luck.

Cheers travelers,
Michael

P.S. Comin’ up with tag lines to fit the mood of the day ain’t easy – your responses are appreciated. Not looking for words of wisdom but will gratefully take any given. Thanks.

8 Comments:

  1. I knew this song. I like this song. I had no idea it was Bowie. I’m familiar with The Wallflowers version.

    https://youtu.be/lXgkuM2NhYI

  2. Even though I’m quiet, I’m still listening.

    Talked to someone on Sunday who was visiting from Virginia. I asked “Which part?” They said “Northern” and gave me the name of some place I didn’t recognize. I said “I lived in Fairfax for three months” and apparently “some place” was in/next-to Fairfax, so that was interesting.

    We miss seeing you.

  3. hmmm … I’m commenting while I’m sleeping, fixed spelling and added a picture too …. obviously, I need to sleep more!

  4. Hi Michael and Karen;
    I am deeply so very sorry for all you have been going through.
    You both have been a trooper for sure.
    Praying there will be a light at the end of the tunnel for you very soon.
    May God Heal you and make you whole again.
    God Bless
    Jan & the 5 Furbys.

  5. Hi I’m sorry I didn’t get any of theses. Sure looks like you both are trying to hang on day by day by day.
    It’s no wonder you’re depressed and scared. But those are normal emotions correct? My friend Bob is
    Having a lot of medical issues we’re not sure will be correctable and when I ask how he’s doing he always
    Says.,”I’m on the right side of the dirt!! “ I hate that expression! But it’s his way of saying I’m still alive and
    Right now that’s all he gets and he’s happy about it. Hope to start receiving your blog again
    Much love to you both ❤️💚🧡💙🙏🙏🙏🙏

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