By Cynthia Toussaint, PNN Columnist

After hearing the worst words of my life, “Your cancer has grown back,” I felt hopeless and hated the world. Worse, I had to tell my longtime partner and caregiver, John, the grim news. How could we pull up our frayed boot straps again and survive yet another impossible health crisis?

Since getting Complex Regional Pain Syndrome (CRPS) four decades ago, people often use words like “fighter,” “pain warrior” and “super human” to describe me. The most recent catch phrase is, “Cynth, you got this!”

I’ve come to detest this perceived awesomeness. I don’t want to be an uber-person. I never did. I’m tired. I’m so, so tired. And I long for a slice of vanilla-flavored normal.

As the owner of CRPS and 19 comorbidities, I could not afford the diagnosis of triple negative breast cancer, the most aggressive form. But that’s what was delivered, since luck has never been this lady’s lot.

Without consulting me, the universe long ago decided that I’m supposed to slay every dragon while surviving never ending illness and trauma. This latest hell-news has filled me with anger, rage and major depression.

So much so, that for the first time ever, I’m isolating. This social butterfly has returned to her cocoon, unable to feel joy.

I can’t sleep as I’m plagued by night terrors. Each afternoon, my body trembles uncontrollably. Once heavenly activities, like meditation, exercising and eating, are now chores.

John massages my taut muscle tension through the days and nights – and my IBS has gone haywire. My bubbly spirit is absent and what’s left is demoralized.

And not so long ago, I thought I had this thing licked.

Early last year, after six months of weighing my impossible-with-CRPS treatment options, I started aggressive chemotherapy knowing that this regimen could leave me with a life not worth living. The dream was that my pain would stay in check and I’d achieve a Clinical Complete Response (cancer that cannot be seen with imaging). I’m certain chemotherapy almost ended me, as I was left with virtually no immune system. As a bonus, this was during COVID. 

I was coined a “super responder” when I miraculously accomplished a complete response. At that point, the odds were strongly in my favor that the cancer was gone. But the only way to be sure was to do the follow-up standard of care surgery, which I chose to forego because, with CRPS, surgery is, well, not an option.

The doctors were floored by how well I did, and every indicator leaned toward a clean pathology report. I was ready to move on with my life, one that I felt I’d earned by doing everything right (diet, exercise, stress management, good sleep – the whole kit and caboodle!) One doctor commented, “Don’t even look at the survival numbers. They don’t apply to you anymore.”   

True to form, things went as far south as possible. Because I’m one of the unlucky ones who’s cancer stem cells never went away, my malignancy is growing back. This is not a “recurrence,” but a “persistence” because the chemo didn’t hold.

And now that my complete response is gone, I’ll never have my prior odds. John has lamented for years, “You NEVER get a break!” and I’m finally seeing it his way.

For a chance of survival, I must now have – ta daaa!! – surgery. The doctors tell me my best shot is to do a lumpectomy with follow-up radiation or a stand-alone mastectomy.

Tragically, radiation is off the table as it often causes neuropathic pain. In fact, a radiologist who I respect told me flat out, “I can’t ethically do it to you.” And during a recent visit with my surgeon, she strongly advised that, due to CRPS, I’m not a candidate for a mastectomy, let alone reconstructive surgery. Wow.

Finding a New Care Team

Adding insult to injury, out of nowhere, my lead oncologist dropped me! She did so due to questionable guidance (something I can’t detail here) and is fearful of litigation, which doesn’t make it hurt less. This woman had become my hero and I trusted her with my heart and life. Her betrayal has been soul-crushing and created a crisis of faith. I don’t know who or what to believe in anymore.

But through the shadows, I’m quietly planning my next move – and will take on Round Two one slow... step… at… a... time. I’m assembling a new-and-improved care team to up my odds, including an oncologist, acupuncturist, physical therapist, pain specialist and psychologist. I’ve sweetened the pot with an EMDR (an effective technique for trauma release) practitioner who specializes in people with CRPS. Heck, I’ve even lined up the use of a heated pool in these COVID shutdown days.    

I’m going to have a lumpectomy, a word I can still barely say, let alone write. The scariest part is that my surgeon will also remove a possibly involved lymph node in a nerve rich area, ripe for ample, new pain. My new oncologist is concerned that due to a surgery-induced CRPS flare, my arm may freeze up and become a non-functional torture machine.

Even if the surgery mercifully works without condemning me back to bed, this wouldn’t flip me a “get-out-of-jail-free” card. Because I can only do the “minor” surgery without radiation, my odds of a quick recurrence remain high. This means I’ll be on the prowl for some off-the-grid insurance, perhaps low-dose chemo or an immunotherapy clinical trial. But neither can measure up to the standard of care radiation.

God, to be well enough to be sick!         

So, here I am again, looking down the barrel of a gun, knowing it likely has a bullet with my name on it. Like I said, I’m tired and angry. I’m up to my ass with picking the lesser of two evils, and having to crack the code of the near impossible.

Give me a break, already! And I don’t mean this in a small way. I’m shouting out to the big, bad, ice cold universe that I hope, somewhere, somehow, has a heart.

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 19 co-morbidities for nearly four decades, and became a cancer survivor in 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”