Spoiler Alert...

PART 5---PERHAPS A SCRIPT REWRITE

For those following this medical ‘journey’ of mine - I seem to have reached another crossroads…

Since late August, after seeing the head of oncology for Multiple Myeloma research [Mayo Clinic] I seem to have slipped into hurry-up-and-wait-mode.

Now, in a play or movie or TV series the Dansel-In-Distress would appear perplexed - however, everyone in the audience would know there’s a completed script and our Damsel would be given a ‘path’ to resolution. LIFE though, typically our life, as many of ‘you’ have already discovered offers no such illuminating element. You and I ‘wing-it’ every single day.

What has happened since my August 20th meeting with a doctor I have seen regularly since 2011? Very little… And surprisingly, I know even less about what the Mayo CAR-T team has ‘planned/scripted’ for me.

On September 10th I went to the Mayo lab for what I thought was another full-panel blood draw, but the tech took only enough blood for a single test tube and the only test result that came back was for my immune level. [ Not even a note in my patient portal or call explaining the change in a protocol that had been unchanged every 30 days for the last ten years.

The following week [September 17th] I was scheduled for another Immune Globulin [G-IgG] infusion, my 4th since October 2023. Because I’m immune compromised [as most cancer patents are] this immune booster is a subcutaneous infusion of healthy immune cells from healthy people. The treatment typically takes about 3 hours. **Normal range for a fully functioning immune system varies [because our immune system is always on guard and always working] between 767 and 1590. Mine has been between 323 and 360. After an infusion my points can rise to +500[ish] then drops slowly again over the following 12 weeks.

What may be happening - or not happening [ due to America’s profit-oriented healthcare system Working Without A Net: HEALTH-CARE IN AMERICA (workingwithnonet.blogspot.com) ] - is a delay or even a complete rejection by Medicare of Mayo’s CAR-T treatment application, for me.

The cost of a CAR-T treatment IF nothing goes wrong is about $400,000[+]. Weighing the risk of that cost especially for anyone over the age of 70 can easily shoot the cost to cover any adverse reactions well above $800,000…SO…even though I also have a supplemental health policy ’if’ Medicare sees me as a high-risk - I may not be hearing from anyone on the Myeloma/CAR-T team - b-e-c-a-u-s-e how do you tell someone with an incurable form of cancer [any health condition] that medical science has run out of options?

Surprisingly - I feel oddly philosophical about this possible turn of events. I’m likely at peace with whatever evolves because I’ve had Multiple Myeloma hanging over my head since 2011 and was forced to face ‘how-much-time-I-had’ soon after my initial diagnosis.

And that resignation goes for everyone who lives with diabetes, cystic fibrosis, Parkinson’s and numerous other health conditions that can only be managed at best. I couldn’t be cured, but my condition could until now, be managed. That management provided 12 more years with family, friends, writing projects, some travel and other experiences I would not otherwise have had.

I may get a call next week [or soon] that a CAR-T treatment has been approved for me - but if that call doesn’t come - I won’t feel cheated - I’ll still feel lucky…

Message Sherrie Todd-Beshore