A year ago when I got my triple-negative breast cancer diagnosis, the second dreadful thought that ran through my head – and perhaps worse than the Big C – was that for a chance at survival I had to once again enter the horrific world of western medicine, a system that for decades had brought me only misery when it came to CRPS.
After five months of researching and contemplating what might be my most hopeful and least harmful treatment strategy, I began chemotherapy with a healthy level of trepidation. While chemo torture can only be described as indescribable, I was stunned and pleased to do well out of the gates. In fact my tumor disappeared during week one.
In all I miraculously completed 17 infusions while escaping lethal complications, only because my integrative doctor, Dr. Malcolm Taw, kept a check on my oncologist’s over-treatment. Let it be known that when a person dies from “complications of cancer”, they died from doctors taking a lethal risk due to money and/or hubris. A personal example is the week my infusion nurse refused to administer chemo because my blood count was so low she was afraid I’d get an infection and die.
My oncologist’s infusion goal was 18, a ridiculously high number I began questioning when I hit twelve. My hair was already growing back while my body was rabidly flushing the drugs out (don’t ask.)
I couldn’t find anyone, in person or on the internet, who’d done more than twelve. Scarier, an oncologist who filled in one morning shared that at no time in his career had he seen someone ordered so many. My guess is that because my oncologist and the massive health system she works for is aggressively working to prove this chemo regimen is a keeper, 18 would seal the deal for their final report.
I reluctantly marched on with this needless torture for one reason. My oncologist fed me a steady diet of fear, western medicine at its best. To keep me in line, I dealt with verbal assaults like, “Your cancer’s going to grow right back if you take a week off.” Another was the golden oldie, “I don’t like your questions!” And after the last infusion went south, I was speared with “All of my other patients want to live.”
The reason I didn’t graduate at the top of my chemo class of one was that while driving home from number 17, my hands and feet felt like they were bursting into flames while fireworks popped. When John got me upstairs to our condo, he took a picture of the beet-red appendages, my expression frighteningly pale.
After being hideously ill for four days, which is typical as side-effects are cumulative, one afternoon I played the piano for a few minutes and out of nowhere my CRPS, mixed with chemo mixed with my new friend, neuropathy, appeared without mercy in my wrists and hands. As of this writing, five weeks later, I’ve had little let up. While my idiot oncologist never took my CRPS seriously, I’m suffering at a level 9-10 pain and laboring to navigate a world built for people with hands.
So much for number 18, which broke my heart. I’m a goal-oriented gal, and desperately wanted closure for trauma release. At infusion centers, people get to know each other, who lives and who doesn’t, and it’s a big deal when a patient completes their chemo course. The nurses do a hip-hip-horrah, ring a bell, and everyone gets to say good-bye and good luck. I gave it my crazy-strong, but as usual, CRPS made my decision.
And it would make my next.
Despite not getting the last one in, I hit a home run. No, a grand slam. Confirmed with follow-up imaging, I’d achieved a clinical Complete Response – the best I could do and hope for. Turns out I’m what they call a “super responder.” Standard of care dictates that with triple-negative, complete response or not, surgery is mandated (lumpectomy and lymph node removal) to confirm all microscopic malignancies are gone.
This knowing had been looming like a dark cloud since my diagnosis. CRPS and surgery don’t make good bed fellows, as its cutting and tissue extracting tends to fire up nerves that in turn can spark a full-blown CRPS flare. My past has taught me my flares can last a month. Or a lifetime.
Still deeply influenced by my doctor’s fear-mongering, I kept coming back to surgery despite its risks and my gut telling me to go another way. For once in my life, I wished I’d been well enough to do all of the treatments without having to work around my never-ending pain. Bottom line, I wanted my best shot at living.
But live how? After surgery, would I be left with a life worth living?
The pulsating, burning pain in my hands and wrists provided this answer too. My body told me, unequivocally, that surgery would leave me with the mother-of-all pulsating burning pain. Body-wide and never ending.
Traumatized that I couldn’t make this biggest decision, my life-partner, John, reminded me that CRPS has made all of them. It didn’t allow me to have a child. I still can’t marry John after 40 years. And it eviscerated my career, one I still yearn for every day. I’m angry that my disease boxes me into corners and knee-caps me at every turn.
Even so, I left fear behind and went toward the light. John and I found three studies, including a meta-analysis, that support de-escalating treatment for triple-negative complete responders. While still early and controversial, these studies show that women who choose active surveillance in lieu of surgery post-chemo live just as long and well, dare I say even better, than those who go under the knife. My integrative doctor, even my surgeon, is strongly backing my decision – as does my pain doctor who wryly commented, “I don’t see any reason to poke the bear.”
I’m damn certain that the decision I’ve made to forego surgery will be standard of care in 15 to 20 years – and that I’m the future. I know deep inside that my CRPS, for all of its hell and fury, is pointing me into a smarter, wiser decision than the one fear would have driven me to.
This “super responder” is in remission, and moving on…