SPOILER ALERT...

Part 2 - Magic, Miracles & Medicine

I truly consider myself lucky…

Okay perhaps ‘lucky’ in my case is relative, but all ‘things’ considered despite my 2011 [Multiple Myeloma] diagnosis, ‘things’ could have been worse… When I was initially diagnosed, all five of our ‘blended’ offspring had graduated from each form of their individual pursuit and even all five grandchildren were ‘on-their-way’. Also, as important, apparently [so far] I don’t have an aggressive form of bone marrow cancer.

Over the course of the last ten years, the various cycles of treatments for my MM have been manageable - annoying - but manageable. However, that saying; “all good things must come to an end” now applies to me. I didn’t have an aggressive form, but I did have a stubborn form of MM that proved resistant to those various cycles of treatment rather quickly…And for me, presently the available treatment list is down to two—well, three - sort of…

CHOICE ONE: a CAR-T treatment. My T-cells those white cells, guardians of my [& everyone’s immune system] would be extracted by the millions, like giving blood only in reverse. The T-cells would then be sent off for reprograming to recognize the presently disguised myeloma cells then kill all those containing the destructive protein masquerading as healthy protein in normal blood plasma.

Sounds simple enough. However, just as we may run a fever or feel totally miserable while our immune system fights a cold or flu virus - so too do CAR-T patients feel ‘not-so-good’ after the modified white cells are reintroduced in order to battle the camouflaged cancer cells.

CHOICE TWO: is a Bi-specific treatment. This approach is typically less intrusive but requires weekly injections for several months to steadily reduce the myeloma cancer cells in the bone marrow. [I have rejected that route having already experienced a similar treatment early on in 2013 with a delightful creation called Carfilzomib. Optimistically, I went for an infusion two days each week for five months [May to October]. At the end of five months my blood work showed no signs of myeloma cells however three months later my February blood work [again] showed the presence of new myeloma cells…Ugh!

CHOICE THREE: to continue to do nothing, as I have for the last year after Darzalex stopped working. One year ago, I was extremely skeptical of this [still] emerging treatment. However, those pesky destructive proteins continue to accumulate in my kidneys and bone marrow, which means at some point [and the clock is ticking] - bone and organ damage will be irreversible.

If you read my decision-dilemma in Part 1 - I left off with a pending meeting at the Mayo Clinic in Arizona with Dr. Raphiel Fonseca, April 30. The meeting with Dr. Fonseca, was for a more recent, detailed update on the progresses and changes to the CAR-T treatments. Before his update, I was 90 to 10 against considering the process, since then I’m 60 to 40 leaning toward accepting a CAR-T treatment. Again, lucky me - I can still procrastinate until the end of August before making a final decision.

Truly everyone faces an end-of-life reality, some sooner than later. No one escapes, we’re either ‘here’ or we’re not - there is no door number three… And in my neighborhood - which is a 55+ retirement community, I have house after house of company. Each house is occupied by people on various medications for heart, diabetes, high blood pressure, arthritis, thyroid, sight or hearing issues… Where I live it’s a potpourri of health challenges, with everyone around me facing an end-of-life reality.

But what ultimately motivated me to share my diagnosis, treatments and next decision w-a-s… After we get the diagnosis of an incurable cancer, or any diagnosis that’s incurable - suddenly the end of our life isn’t out-there-somewhere’—it’s infinitely closer with a major shift in our approach—to everything.

My preliminary diagnosis from Dr. Lopez in Colorado was May 2011, with a confirmation two months later by Dr, Fonseca—but I remember the day in mid-August when the reality of this health jolt truly sunk in. And it hit me in a rather odd way. I had always been healthy, rarely getting a cold or flu, only the usual childhood mumps, measles etc. The only time I had been hospitalized was for tonsils when I was six then as an adult giving birth. However, that August as I sat at my desk, I wondered if I might not be alive at Christmas or the coming spring for my next birthday. Should I even buy any new clothes or replace old underwear? [I warned you ‘it’ hit me in an odd way.]

This June I go for allergy testing, but not the typical tests for plants, food or animals. The testing that Mayo does is for the ‘ingredients’ in the medications the hospital seeks to use to counter some of the adverse reactions during the CAR-T process. Most people are familiar with this medical-carousel — you take one medication for a problem then need to take a second medication to counter your reaction to the first medication… This specialized allergy testing is designed to mitigate some of that cycle.

As I journey through this [rather uncharted] new territory, I’ll take you with me. My hope is to share information or insight and/or comfort depending on your situation as a neighbor or friend or family member or newly diagnosed patient…

[**AND guess what there’s also some amazing research into Ivermectin [that likely everyone over the age of 12 has heard of…]. Satoshi ōmura and William C. Campbell won the 2015 Nobel Prize in Physiology or Medicine for the discovery of the excellent efficacy of ivermectin. Recently, ivermectin has been reported to inhibit the proliferation of several tumor cells by regulating multiple signaling pathways. This suggests that ivermectin may be an anticancer drug with great potential.] Source: National Library of Medicine