Home, Week 22

As per the previous post, we got the biopsy readout from the oncologist on Wednesday.  In his words, “there is zero leukemia present.” This is obviously quite good news, but also please remember: There is no cure for leukemia short of a bone marrow transplant, and that highly risky procedure is not an option we will pursue in my case. The Big L is still present in my system, I remain susceptible to a resurgence, and also in the doctor’s words, there is “better than a 90% chance that leukemia will recur.”

As Han Solo said to Luke Skywalker, “Don’t get cocky.”

The possibility probability of recurrence requires that we now enter a chemotherapy maintenance mode. That means oral meds (Rydapt, my old friend, that fights the FLT-3 variant) two weeks on and two weeks off, probably at least for the rest of this year. That is not difficult to manage (although the pill smells like a skunk), and the med cost has so far been  negligible in my situation. It is unclear what impact that may have on my immune system; weekly monitoring and everyday caution are advisable.

We also met with the infectious disease doctor on Wednesday, who is also delighted with the biopsy readout, but there remains the possibility of a resurgence of the Fusarium fungus; that will also require meds to keep the alligator at bay. She has not yet finalized a recommendation on which meds and how often.

Frankly, if the alligators are kept at bay, I’m good with it. I personally am grateful that Big Pharma is around when you need them. (Some of Big Pharma, anyway.)

Housekeeping news: This journal entry will bring to an end my Caring Bridge posts. Many of you have indicated an interest in the entertainment value of the Friday messages (you are clearly starved for input) so I will continue Friday posts (blog entries) on my own website,

www.alligatorpublishing.com

That website will be up by next Friday 17 February. If you are on Caring Bridge, you will automatically continue to receive an email bump when there is a new post at that site, and just like with CB you may navigate there to read it. (If you’re tired of me, you may Unsubscribe.) There should be a photo gallery of sorts, and other small writings which I have no place else to display.

The book Alligator Wrestling in the Cancer Ward will also be available for ordering at that site (as well as on Amazon) in paperback, eBook and an audiobook version narrated by the author.  The book should be launched by March 1, 2023.

Lynn and I are immensely appreciative of your concern and your prayers, without which I am convinced this post would be of an entirely different nature, and probably written by someone else. This has been a long ordeal, and it will really never be over, but I am humbled that you have chosen to stay with us throughout. You guys are the best, and I am honored to call you my friends.

I am also extremely indebted to Caring Bridge for the use of this site and the ease with which the communication has flowed back and forth. This is a class act and fills a much-needed niche. If you have considered this experience valuable, and if you have not already done so, please consider offering a small financial gift in the Tribute section.

Speaking of Caring Bridge, don’t forget to check the progress of my fellow traveler Shelley Merritt. She is on a tough road, but her CB posts are nothing short of marvelous.

Pray: Keep the leukemia alligator (“The Big Leuk”) at bay. Sound judgment from the medicos as to which medications to use… a lot of the treatment appears to be art rather than science.

2 Timothy 1:7 For the Spirit God gave us does not make us timid, but gives us power, love and self-discipline. (NIV)

Enormously grateful to still be here!

Curt