SPOILER ALERT...
Part 1--Tealeaves, Horoscopes & Tarot Cards
If I was going to choose elements and/or experiences, I could have in common with someone who was a prominent household name, bone marrow cancer would not be included. However, besides journalism and books Tom Brokaw and I also have Multiple Myeloma in common.
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Through my years in Junior High [aka Middle School] and High School I never missed reading our local newspaper, though I use the term ‘reading’ loosely. In actuality each morning I rushed to check my daily horoscope - which happened to be on the same page beside another feature I never missed, the column written by Ann Landers.
Current events for most 12 to 18 year-olds then as now did not include much in the way of actual ‘news’. And, I’m sorry to say - even though I wrote for then was editor of our monthly high school newspaper THE STATIC, it was for school events we covered like: snow removal in the student parking lot or the name of the band playing at the next dance or a list of contestants vying for Queen of Hearts…
After high school graduation while working and taking university classes too, one would expect that paying closer attention to “current events” might be a higher priority, but nooo. What still remained important was checking that daily horoscope - added - to - spending some of our extra money on a local tealeaf or tarot card reader, to get even the tiniest glimpse of what our future held. That focused curiosity level - was especially high for the possibility of meeting the person we might marry.
For me [and my high school peers] it’s now 3-score years and then some - and - literally “SPOILER-ALERT” we now know with each reunion what happened [so far] to each of our high school ‘heroes’ and ‘damsels’. As well, it was a good thing that none of the people who read our tea leaves or horoscopes or tarot cards truly ‘saw’ what was lying in wait for our future or we might have run and hid under our bedcovers then not left home after high school graduation.
Okay, how does this rambling connect with Tom Brokaw and where am I going with this?
Because so much of cancer conditions get attention that revolve around statistics like: a certain percentage get breast cancer or lung cancer or pancreatic cancer or prostate cancer, etc…with Multiple Myeloma, through the years survival statistics or relapse statistics or side effects statistics didn’t help. Statistics weren’t supportive for either the patient or their family. I counted on an online newsletter called The Myeloma Beacon for information that wasn’t entirely from a pharmaceutical company or hospital/treatment network.
But even that was limited until I recently found a website: Smart Patients. Finding this site was particularly important, especially now since after ten years of going from Carfilzomib to Pomalist, to Revlimid, to Ninlaro then Darzalex — in May 2023 Darzalex stopped working for me. I was then told I was out of other options except for a CAR-T Cell treatment program.
Anyone diagnosed with any serious cancer or health condition that can/will compromise your life span - sooner than you expect - will give you a jolt. And though I had gone through that mental-emotional-spiritual process after my initial diagnosis in July 2011 - this reality had a much louder ticking-clock.
After digesting the implications, I could ask Smart Patient members/actual patients in a chatroom setting how their CAR-T treatment affected them. Also, since last May I had tried a more natural route with high dose Turmeric [3,000+mg] with green tea and ginger as well as a low dose [4mg] dexamethasone once a week. My numbers hung in there until January 2024 then that ‘clock’ began to tick oh-so-much-louder.
Tom Brokaw and I were diagnosed with Multiple Myeloma about the same year and we both have undergone similar [as most do] rounds of various treatments that don’t cure MM or even put patients in remission like other cancers. The best that MM patients can expect is to cycle from one treatment to another that just keeps the cancer cells at bay [somewhat] without causing other issues.
My choice now is: take a [calculated risk] with Carvyki used for the CAR-T treatment or continue to do basically nothing. Doing as I have been will soon cause irreversible organ damage and make seeing Christmas 2024 unlikely. Typically, with no complications a CAR-T treatment offers a prolonged life of about two years, that for me means about May 2026. The cost [besides possible side effects] is typically $500,000 with no adverse reactions/complications.
Since the natural route has not managed to keep my blood chemistry even, I have put off doing anything else as long as I dare - so another decision needs to be made this week. I see Dr. Fonseca head of Mayo oncology, Arizona tomorrow…
Because Smart Patients was so helpful for me, I felt that sharing my CAR-T treatment, Multiple Myeloma adventure might be helpful not only for other MM patients, but all cancer patients or anyone diagnosed with an incurable medical condition.
Stay tuned, as they say on the radio…