20230713 – Playing the Long Game with Cancer
Deep in the grip of another dexsomnia night (see my previous posts) while watching YouTube model railroad videos and occasionally helping a semi-insomniac grandson (probably triggered by excessive late night screen time), I began pondering again, a typical and frequent activity for me as you all know, and that led me to the subject for this post.
Maybe an odd title for a post, but I think I’m coming around to that idea now that I’m several months into my treatment for Multiple Myeloma. Yeah, I feel like I have to say those two words on a regular basis, just to keep me focused on the reality of my daily life. However, my visit yesterday with my oncologist’s Nurse Practitioner Marlee covered a lot of territory and was very encouraging. My lab results are showing continuing improvement in so many of my blood counts, only three abnormal numbers on the regular CBC test they perform, two abnormal but improving numbers in my immune system, and steadily declining cancerous protein numbers in the key myeloma tests.
My results are good enough that instead of waiting for the end of three more cycles of my current treatment plan (the end of September) to do another bone marrow biopsy, they’re going to do one in three weeks near the end of my current 28 day treatment cycle, and based on the results, help me decide to continue current treatment, switch to maintenance mode, or do a stem cell transplant to totally clobber this cancer. That news was a very pleasant surprise and helped me to look more intently toward the long game I mentioned, which for me is remission and undetectability, with many more years of a good quality of life.
The weird thing about this cancer is that I’m completely asymptomatic; there is nothing I feel or see in my body that tells me I even have it. The only clues I have about the myeloma itself are the numbers on the lab tests. It’s the side effects of the chemo-immunotherapy treatments that remind me every day I’m battling an incurable disease. And those are the things I get really annoyed about having to deal with; that daily short game.
It’s very frustrating, it’s what puts me in a bad mood on occasion, causes me to engage in, although admittedly less frequent, personal pity parties, leaves me weak and tired so much of the time which keeps me from doing things I want to do, is causing neuropathy (constant tingling sensation in my fingers and feet up to my ankles}, and is wreaking pure havoc with my digestive system and taste buds. Much of the food I liked best now tastes like a mouth full of metal and chemical paste at frequent and unpredictable times. I have to find foods that still taste okay and eat other nutritional and healthy for me foods despite the bad taste. That’s really hard, probably more annoying than any other side effect I have to deal with.
But in the face of all of this, I still count my blessings every day, thank the Lord for granting my wish for one more day with the love of my life, and consider myself one of the lucky ones for whom the battle with cancer and other serious diseases is so much easier than the all-out war so many other people face, the pain they deal with, the drugs they must take, the horrible toll on the body so many endure, and for some the finality of their condition. I’m lucky my condition leaves me optimistic that I might just be able to hang around as long as I originally wanted to (I’d like to make it to 90 like my dad) and have the experiences I had always hoped to have before I ended up with this new normal.
Getting through the short game with my family, friends, and faith to lean on, and my absolute best friend, soul mate, and love of my life always offering a shoulder, a desperately needed hug, a shared tear, and a gentle reminder of how far we’ve come, together, gives me the strength I need to face each day as it comes and focus on the possibilities for the future; remission, undetectability, and a good life.
All of that makes it almost easy to begin and keep on playing the long game with cancer…Pops
Hi Terry! Have you heard of a total blood transfusion that changes your blood type? I was talking with my former husband a couple weeks ago and his current wife has had a cancer battle. They did this transfusion and she has now been in remission for 10+ years. I don’t know any more about it but wanted to pass it along in case it could help you. Love you friend! Teri
Deb has heard a little about it, I had not. I’ll see what I can find out, thanks! It’s really worked out well for her!
Yea!!! Sounds like some very positive news. We will keep you on our prayers for the best biopsy results. Hugs to you and Debbie