Day +4136: Swallow it down (what a jagged little pill)…

“…It feels so good (swimming in your stomach)
Wait until the dust settles
You live you learn, you love you learn
You cry you learn, you lose you learn
You bleed you learn, you scream you learn…”

Based on questions after Michael’s last updates plus changes made yesterday (and to to help me keep it all straight in my head), I think a pain/med update is in order.

About the pain spiral…

Keeping meds and food down is not, as some surmised, due to the pain medicine. Some drugs, like morphine, Demerol, and dilaudid in pill form will come back up as fast as I swallow and keep me dry heaving for hours. Fortunately, over the years of treatments, transplant, and surgeries, I’ve learned that I’m able to take others with no stomach upset at all, including those I take now. Their worst side effect is constipation. This time, it’s the pain itself that precipitates the loss of appetite and subsequent nausea that, in turn, leads to vomiting and even less desire for food. The more extreme the pain, the more intense the nausea. Added problems arise with prophylactic drugs added due to low blood counts. I’ve taken acyclovir (antiviral) for many years without difficulty but moxifloxicin (antibiotic) nauseates me, and the antifungal whose name I can never remember makes me vomit. I jokingly call my prophylactic drugs Acyclovir, Moxifloxicin, Cottontail, and Peter, a shout out to one of my old favorite children’s books.

I saw both CRNP and oncologist yesterday. My drug regimen was reviewed and remodeled in search of the perfect cocktail. I’m now officially overwhelmed and confused but have Michael and a written schedule to help keep it all straight. Quantities of oxycodone and oxycontin were changed; lyrica, antifungal, mild steroid dexamethasone, and a new chemo drug were added.

Medicine Dance

3:00 a.m. Tylenol 500mg (pain)
6:00  a.m. oxycodone 5mg (short term pain) / Colace (laxative)
9:00  a.m. Tylenol 500mg / lansoprazole (anti-reflux) 30mg / prune juice with Miralax (laxative)
10:00 a.m. dexamethasone (pain and anti-inflammatory steroid) 1mg (two pills) with FOOD
11:00 a.m. salt tabs (cramps/spasms) two 1mg pills quartered with Yogurt
12:00 p.m. oxycodone (short term pain) 5mg 
12:15 p.m. oxycontin (time release, long term pain) 20mg / Colace
3:00 p.m. Tylenol 500mg 
5:00 p.m. posaconazole 100mg x 3  (Anti-Fungal)
6:00 p.m. oxycodone 5mg / Colace / Moxifloxacin with dinner
9:00 p.m. Tylenol 500mg / Compazine (anti-nausea)
10:00 p.m. Acyclovir
11:00 p.m. Lyrica 25mg
11:45 p.m. oxycodone 5mg / yogurt / prune juice
12:00 a.m. oxycontin 20mg
As needed Compazine / Zofran – Max 4x day
Some combo totaling 100+ oz. – water, pedialyte, nutrition shake with ice cream, coffee, prune juice

Chemotherapy drugs

Vidaza
Venetoclax 

Because these are going to involve a new treatment plan, I’m saving them for a different post tomorrow. For now, it’s nap time…

xoxo, Karen

8 Comments:

  1. Alanis. I had this album when it came out.
    https://youtu.be/GFW-WfuX2Dk

  2. Well, my dear cousin,/ little sister, it is so fantastic that you and Michael are both mathematical! My head and eyes are swimming. My arms are reaching out to hug you. Love, Linda

  3. Karen and Michael, it would be hard to keep that schedule, when do you sleep? A bit of a dilemma, sleep heals the body, but also the idea of not letting the pain get too far ahead is good, hard to balance everything. 🙁 Voriconazole??? an anti fungal, I remember it because the IV form made Mike hallucinate. I’ve spent the last few weeks with a family member after a knee replacement surgery, the pain meds did not help her digestive system.
    Wish there was something else I could do to ease the pain, all I can do is send a virtual hug to both of you and hope the treatment plan works!!!

    • I’m fortunate there are pain meds I can tolerate. Thanks much as always for your sustaining love and great vibes. xoxo

  4. This all sounds so painful and time consuming. I’m so sorry you’re dealing with this, but glad there are some meds you can tolerate.
    much love – Jenny

    • ❤️ Think of you often and miss you much. Wish I were up to a visit. A friend visited NS recently, and her photos were gorgeous.

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