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Last Sunday night I finished reading “Up for the Fight: How to Advocate for Yourself as You Battle Cancer — from a Five-Time Survivor.” I woke Monday at 4 a.m. thinking about that book and the timeliness of so much good information generously, candidly shared by the author Bill Potts. I grabbed my phone and wrote him a (long) email of gratitude. And that’s how it came to be that a guy with 20 years of cancer experience, a self-advocate, a motivator, an author called me on my way out the door with Jackie to that very big treatment plan discussion with my myeloma doc to say, “I’m going with you in spirit. What you wrote tells me how strong you are; how you are owning this. You got this!” This cancer club has very remarkable members.
Daughter Ina Zoom-ed in for our meeting at Hutch Cancer Center. The good news confirms my case is not high risk. After considerable discussion of long term side effects (just like the recitations at the end of TV drug commercials), we and the doc are inclined to follow a 3-drug regime.
There’s much prep before beginning the drug therapy so the start date is set for February 24. The hope is that four rounds of drug cocktails — that’s about 4 months — will get the cancer load knocked down to virtually zero so we can move to the next step. That phase of treatment would involve harvesting a big bunch of my momentarily, mostly cancer-free stem cells, popping those in the deep freeze, walloping any remaining cancer in my body with a big dose of chemo as a kind of ctrl-alt-delete, and then reinstalling my operating system by transplanting my flash frozen stem cells back in my blood and marrow.
But wait a minute Not so fast. We are definitely in second opinion territory here.
Concurrent to treatment preparation and before the final commitment to start, we have an appointment with a myeloma specialist at Mayo Clinic in Arizona on February 9. Myeloma is rare and there are several types of myeloma and my presentation is unusual. (I think I’m hearing a chorus of “Of course your presentation is out of the ordinary, Mary!”) There are so many advances happening right now in the area of blood cancer. We’d be remiss if we didn’t get a few more learned minds pondering the best course of action for this case. There’s still runway left for a second look by the folks at Mayo and that may or may not create a plot twist.
Though there’s no cure (yet) for myeloma, THE MISSION IS REMISSION.
With a deeply affectionate nod to my grandfather who worked as a switchman on the Soo Line railroad, I’m loving this visual representation of where we are now.
I felt silly but enlightened when I said to the doc that I understood the bone pain, but asked why am I so dang tired all the time. My red and white blood cell counts still look remarkably good. She said, “Mary, your body is fighting cancer. It’s working very hard all the time.” Huh. 🤔 Point of learning: I thought only medical intervention did the job. I did not know that the body works to fight cancer on its own accord. Now there’s motivation for body supporting nutrition, rest, and movement. That last one is proving a little tricky between the bone pain and fatigue, but I persist nonetheless.
My heart is so full of gratitude for all the support and love coming at me. I’m wrapped round and round in it.
May you stay safe, be well, love much and be loved, and have easy times in 2023! 💕
Mary