Riding the Rough C’s – National Pain Report

My first C, 38 years of Complex Regional Pain Syndrome, braced me with the gift of resilience. But I guess no one can be prepared for my second C, Cancer and one of the toughest prognoses at that, triple-negative breast cancer.

After spending half a year learning, reading, talking and thinking about whether treatment made sense with CRPS, I started a high-dose regimen of my third C, the dreaded (a well-earned adjective) Chemotherapy. Im just starting week ten of fighting for my life.

Because my lot tends to read like Ahab battling the great white whale, OF COURSE that wasnt enough! While staying in a friends beach-front condo to take a weeks break from treatment due to severe pain, all hell broke loose not only in my world, but the whole damn world. Welcome, C #4, COVID-19.

Cynthia Toussaint

Im not much of a complainer, but going through chemo therapy with high-impact pain, a severely compromised immune system and a pandemic is, pardon my French, the sh*ts. In fact, during last weeks visit with my integrative doctor, he expressed deep concern that if I catch even a cold, I will likely end up with pneumonia in an over-crowded hospital with limited supplies and staff.

Already my weekly chemo infusions are much more difficult post-pandemic. Before I go in, I have mandatory screenings with the clinic staff about any symptoms John and I may be feeling and anyone weve come in contact with. When we get to the hospital, him pushing me in my wheelchair, we hit a barricade of fatigued masked and gloved healthcare professionals who are dead set on keeping the virus out. After more interviewing and temperatures taken, we finally get through the treatment doors. Johns only allowed to join me (so far!) due to being my pain caregiver.

When I hit the chemo chair, my nurse is unable to mask me per usual due to the expected supply shortage. I couldnt help myself last week when I asked Scarlett if she was comfortable doing her work and she replied, Honestly, Cynthia, I dont want to be here. Its too unsafe. Then she said, But cancer is so aggressive, at least I get to help the people who are worst off. That really shook me.

When I had the pre-infusion check in with my oncologist, he urged me not to miss another treatment as they dont know day-to-day whether the clinics going to shut down. Seriously, I may have to start this treatment all over again? And, if so, when and where? This whole thing is surreal.

Oh, and last week an old familiar pain friend dropped in more barbarous than ever. Good God, Ive never been so constipated in my life as opioids have nothing on chemo for plugging the pipes. After straining for two days and nights and almost passing out on the throne, John begged me to go to the ER. Any other time, but not now. Certain a hospital visit would deliver the virus, I lay awake on my side crying through that miserable night.

The next morning my oncologist prescribed lactulose, assuring me it would quickly do the trick. Ten hours and two doses (complimented with suppositories) later, I experienced my most painful movement ever. Vacillating between wanting to vomit and near fainting, I had a woman in pain friend on speakerphone (remember, six feet apart!) comforting me and John pleading to push. I felt like I gave birth.

Last evening whilst detailing this saga on the phone with my psychologist, I pieced together the BM culprit. You probably guessed it, the usual suspect western medicine caused my suffering. Heres the low down. My oncologist told me, time and again, to take my anti-nausea meds and I finally caved three weeks ago. Shortly after starting that med, I noticed my urine turned bright yellow. Now I see that signaled dehydration which, as we know, leads to constipation. Then get this; when I asked my oncologist what the side-effects are for lactulose, he said, There arent any. Well, lo and behold, nausea is the #1 side effect for this high-octane laxative.

Again, western medicine has set me up to be as miserable as possible. If I continue to follow my oncologists advice, Id be on a side-effect loop until the end of time (which, ironically, may be just around the corner.) Instead, I called my integrative doctor, and am going to go with a sensible constipation-busting regimen of magnesium and lots of daily dark green leafy veggies. Hello!!

On the good news front, my level 10 lower body agony has been easing. As you may recall from my last post, I was wrangling with my integrative center for weekly acupuncture to control my CRPS pain along with chemo-induced myalgia and neuropathy. My saint-of-a-doctor there put his foot down with the front desk, and is now treating me every week, come hell or high water. The pain let-up is achingly slow, but its no longer getting worse. Another massive help is that a friend is heating her outdoor pool for me to get my heavenly, healing laps in. I continue to find angels among these roiling Cs.

Curiously, the only familiar part of this ever churning epic is the self-isolation. Ive been socially cut off for the past four decades, so being separated from others is par for the course. I can imagine this is a real bear for the uninitiated and am grateful that in times of crisis we with life-altering chronic illnesses are generally miles ahead of the curve.

These high Cs are especially rough, but so far I find them navigable with a port-in-the-storm always within reach. We women in pain are paradoxically prepared for a crisis with endlessly mended sails to keep adrift. A rogue wave may hit us broadside, but instead of capsizing, we remain unsinkable.

Despite these unprecedented times, ladies, continue to set out for the horizon and never look back.

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Riding the Rough C's - National Pain Report