Navigating CRPS and the bleakest breast cancer dx (Triple Negative) is an impossibly riddled nightmare – and since my last post I’ve gone back and forth about treatment almost nonstop. Feels like I’ve got whiplash from the head-spinning indecision of it all.
My original choice to start with chemo which, if effective, is my best chance for survival didn’t stay on the table for long. Not after I thought about the insanity of poisoning my entire body – a body that has endured CRPS and multiple auto-immune comorbidities for nearly forty years. It doesn’t take a genius to know that throwing gasoline on a fire isn’t going to produce anything good.
So I decided to take the “easy” route and just have surgery. But that ain’t no bed of roses either. I’d probably get through the lumpectomy fairly unscathed as breast tissue has few nerve endings, but the lymph nodes and their embedded area are virtual dynamite kegs for CRPS spread. That, and when I asked my USC oncologist if I had a shot at living with just surgery, she paused pregnantly, before responding with a tepid, barely audible, “maybe.”
At that point I decided to go with no treatment. I’ve fought for life forever and it felt like my run was up. I just couldn’t start the CRPS all over again, and death seemed like a better outcome. I thoughtfully amended my will, re-distributed my belongings and planned my memorial service. Hedging my bet, I also made an appointment for a second opinion at UCLA.
That team was brutal. When I said that chemo was off the table, they basically told me I was toast. The surgeon only advised that I have the tumor removed because due to the aggressiveness of my cancer, the mass would likely break through my breast giving me a horribly, gruesome nightmare of a death.
These are the choices left to us women in pain.
When I grimly wrote to a girlfriend, Gigi, a women in pain who works at the NIH and has been doing research for me (more bad news!) about my dilemma, she got back with “Girl, you’re in a category 5 shit storm with no umbrella. Of course, you’re a mess.” The only good news about that right-on-the-money assessment was that I knew I had my next post title.
Despite my lousy prognosis, people’s reactions have been for the most part soul steeling. While planning to undergo chemo at the onset, a former nurse friend insisted she come over once a week to take care of me while giving John a respite. She even showed me her best saving-face technique for out of control retching.
It’s not much of an exaggeration to say that I have a pool full of people at my Y who are worried about and rooting for me. The conversation throughout my swims (which carries into the locker room) revolves around the pros and cons of my cancer treatment choices. These fellow mermaids have become a family to me.
My For Grace colleagues are beyond awesome. I have integrative doctors near and far talking to each other and gifting me with their best advice. Jane Goodall, a For Grace Board member who I love and religiously admire, sent a beautiful message, ending with “You of all people do not deserve this. And I will surely send prayers and thoughts of strength and courage.” Every angel I’ve met through Jane is lighting candles for my cure in Europe.
I’m receiving regular calls, texts, cards, gifts and other check-ins from loved ones – and I’ve been invited to rant and rave when needed. I recently received a card from a wonderful friend who’d given a donation to the Catholic church so that Capuchian Friars throughout the world are praying for me. And yesterday a Jewish friend mentioned that last week in synagogue my name was spoken during the High Holy days. If prayer could heal me, baby, I’d be home free.
And, of course, there’s the love of my life, John, a man who would jump into a volcano before seeing me get hurt.
On the other end of the spectrum, my family continues to disappoint and a couple of friends don’t have the right stuff for my new stroll through the kingdom of the sick. I’ve been wisely advised to cut ties or place distance with those who are toxic. Cancer is a resource-depleting disease, and those who bleed energy have no place in my orbit.
I recently got two pieces of advice that ultimately brought me to a landing on how to move forward. One friend, Alexis, suggested that I let the cancer run its course. She told me the tale of a woman with stage 4 cancer who decided not to fight, but instead fulfilled her ultimate dream of swimming with dolphins. The woman miraculously remitted, or so the legend goes. While listening to her words, I had trouble catching my breath as to me, though not intended, this story implied that my life wasn’t worth fighting for. Alexis’ gift was that I was shocked into a stern reminder of how much I love and value myself.
The second came from Bradley, a gem of a man who broke his neck at 19 and has been a quadriplegic for the last five decades. This one-time cowboy really gets me, and strongly encouraged my fight saying “Cancer’s one more wrinkle on your ride, Cynthia, but it’s still your ride.” After a long pause, he continued, “You’re a thoroughbred, and you’ll run till you die.”
I’m not dead yet. And yesterday I decided that I’m going with the chemo, come what may. Let the CRPS gates of hell open wide. Despite this god awful disease’s every effort to end me, it hasn’t done the deed. After all’s said and done, the only way I know how to live is to stare down fear, strap on my boxing gloves and take another swing.
Nah, I won’t be swimming with dolphins. Instead, I’ll be leaning into a headwind of a category 5 shit storm, with a dazzling, impermeable, indefatigable umbrella of love and support.