I found out on Tuesday that my tumor markers are down by 1/3. That’s really good news. It means I get to stay on Afinitor, which has been a pretty easy treatment for me so far.
I am only sharing this now, though, because I have been pretty dang grumpy and really didn’t feel like celebrating with you all.
“It’s good news, but I’m not happy and I don’t know why and I don’t feel like being around celebration so just leave me alone.” (My evening greeting to my PATIENT husband.)
On Tuesday, I was having issues with mouth sores (side effect of Afinitor) — which pretty much cured my sugar addiction overnight. Chocolate was the worst! The melted chocolate stung and burn my mouth. So maybe that was part of my grumpiness?
Dr. Wahl told me the steroid rinse she prescribed to help with my mouth issues would cause tooth decay. She told me I would need to be meticulous with my oral hygiene. So I bought my first sonic toothbrush at Costco on the way home.
THAT THING IS AWESOME! I have no idea why, but that thing works like a magic wand for my mouth pain. Anytime I have a flare up, I just pop the toothbrush in and HEAVENLY RELIEF! Not only that, my sores have HEALED.
Brushing my teeth has become this new addictive sensual pleasure! And I can again eat ANYTHING. Hawaiian Luau, here I come!
I haven’t even picked up the steroid rinse from the pharmacy.
But I still didn’t feel like celebrating the tumor markers.
So I thought about what I *do* like to celebrate.
I celebrate that at my June college reunion, I could not dance without some scary back pain. But today I asked my best friends to go dancing with me because I can move like a TEENAGER! (OK, a teenager with very poor dancing skills.)
I celebrate that today I hiked 8 miles with my husband, scampering up steep hills with a healthy pounding heart and inhaling the autumn air deeply and cleanly. Just over a month ago, I pulled air through “smoky” lungs filled with cancer ditzels.
I celebrate that I can sleep in any position without absolutely no pain — awkwardly cuddling my son after a nightmare, spooning my spouse, when for most of last year I have been sleeping on my back, without a pillow, so avoid positions that caused me pain.
I swim effortlessly for miles at a time, flip turning, diving, and then crawling over the side of the pool to get out. In mid summer I was carefully and painfully moving through the pool, one lap at a time.
I make love to my husband without pain — something I thought that chemo induced menopause had made a permanent part of my life.
The treatments I have received at Swedish Cancer Institute have been restorative and healing. I’ve been gifted with a healthy feeling body, a second youth.
For all of this I celebrate.
But tumor markers just leave me feeling a bit pissed off.
Tumor markers measure the progression of my disease. I expected my tumor markers to be down because I felt so good — clear lungs, pain free. And I expected to be HAPPY! I thought the muddy fog that gathers before each oncology appointment would lift and I would return to brilliant blue skies.
But it didn’t happen that way. And that puzzled me for awhile.
Here’s the thing. When I swim, hike, dance, cuddle, and make love, I am ALIVE. I am grateful for the pleasures of living. And I can stay in this place of gratitude and ignore (deny) the cancer. I CELEBRATE every day.
But tumor markers, even when they go down, are never about health. They are simply about dying more slowly.
I really enjoy knowing about my disease and my body. I like the science. I like visualizing my physiological self. I like knowing as much as possible about what is going on. It calms me. It centers me.
But it doesn’t make me want to celebrate.
Tumor markers are about disease – an incurable, terminal disease.
I used to picture fighting cancer a bit like solving a crime in one of those TV shows like CSI or Criminal Minds. We’d have a team doctors who, much like the imaginary crime teams in these shows, would investigate this particular cancer, watch it, scope out it’s behavior, monitor its strategy and then swoop in with their own clever strategy to arrest.
But despite all of the great advances and innovation, we can’t really see cancer clearly enough yet to do that kind of behavior analysis. Cancer gets smart and learns how to adapt to our strategies and treatments, but we all we can really do it throw another attack at it and hope the cancer doesn’t already have a strategy to work around it right away.
There is no control over the war monitored by tumor markers. A dip is just a lull – and we all know how the final battle ends.
I am grateful for these moments of peace, when cancer retreats or stalls.
But I don’t feel like celebrating right away.
But I’m OK now. Let’s celebrate today.