Day +4102: Whatever gets you through the night ‘salright, ‘salright…


The roller coaster ride towards Friday’s bone marrow biopsy continues…and somebody cut the brake lines! Well, it feels that way. It is frightening how quickly things shift in Karen’s condition right now or in the presentation of “normal.” To be clear, the battle between disease and chemo are a mystery and the biopsy may provide some insight. The current state of Karen’s day to day is overshadowing this war tearing through her bones and body.

In preparation for the biopsy, blood thinning and platelet impacting medication, such as Aleve (Naproxen), had to be halted. Karen had been allowed ONE Aleve daily with a close eye on the platelet count (not that we’re watchin’ that one anyway – remember: sarcasm is free).

Saturday, we went to Baltimore with her nieces to see the Donna Summer Review. Cool Show! We had a great time and overall a reasonably good day. The five flights of steps in the parking garage were a challenge due to fatigue and shortness of breath, but she managed and controlled the nausea. Food was being a bit mischievous, but again, she managed regular meals and snacks.

“….Monday, Monday, can’t trust that day
Monday, Monday, sometimes it just turns out that way
Oh Monday mornin’ you gave me no warnin’ of what was to be…”


By Monday morning, Karen was battling constant all over muscle pains, rolling bouts of nausea all accented by storms of hot flashes with intermittent chills. She curled up on the sofa most of the day. Solid food was once again abandoned – the abomination of offending smells and tastes overloaded her senses. Fatigue ruled.

We tried addressing the individual issues:

– Muscle pain and spasms. Massage the legs, a four Tylenol per day regimen to take the edge off of the pain (it’s only bad for the liver after all). THC drops for spasms. Muscle relaxants.

– The Pedialyte/Cranberry elixir to balance electrolytes. Broke out the blender and made the shake concoction. Hey, all you got to do is swallow – right? Burnt toast with peanut butter. Escalated on the scale of nausea meds from Ativan, Zofran, and finally Compazine.

– Blankets on. …off… on…. off ….

By Monday night, we pulled out the stops – Oxycodone. This immediately has to be offset by a dose of Colace to minimize the zombifying effect of the narcotic on the bowels. The whole package we refer to as the kitchen sink solution.

In trying to tend to her, I kinda was struck by the chicken or the egg like question of cause and effect. If we could manage the muscle and body pain, would we be able minimize spasms, reduce the chills and flashes, normalize the tastes and smells?

A implies B, B implies C, hey, we are math pukes – roll with it! ….
oh well, it is more like F implies K!

I did go refresh my memory for options on treating muscle pain. Yeah, the ice / heat type of stuff – so, I wandered to the Cleveland Clinic on muscle pain.

“… A B C…
It’s easy as, 1 2 3
As simple as, do re mi
A B C, 1 2 3
Baby, you and me girl …”


So after reading the basics about that anything and everything seems to cause muscle pain and spasms, I hit on two questions on the site in the style of jeopardy:

Chemotherapy. What medications cause muscle pain?

Leukemia. What other conditions cause muscle pain?

The frustration once again surfaced, that oncologists seem to be universally interested in the Big C and its causes and treatment. There seems to be minimal connection to the person who is hosting this macabre scientific playground.

Our doctor is great, caring and compassionate, our CRNP exceptional, the nurses and tech team miraculous….

…but asking the right questions is essential and self advocating is not only necessary, it is survival.

Tuesday: Ditto.

In summary, the week is going to suck!

Life.

Cheers,
Michael

2 Comments:

  1. “…but asking the right questions is essential and self advocating is not only necessary, it is survival.”

    This cuts to the heart of so much.
    Thank you for continuing to keep us updated of your journey. My heart continues to go out to you both.

  2. Love you, Kare.

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