Riding the Rough C’s

Riding the Rough C’s

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. I’m 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 wasn’t enough! While staying in a friend’s beach-front condo to take a week’s 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

I’m 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 week’s 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 we’ve 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. John’s 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 couldn’t help myself last week when I asked Scarlett if she was comfortable doing her work and she replied, “Honestly, Cynthia, I don’t want to be here. It’s 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 don’t know day-to-day whether the clinic’s 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, I’ve 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. Here’s 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 aren’t 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 oncologist’s advice, I’d 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 it’s 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. I’ve 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 C’s 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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Cynthia Toussaint founded For Grace in 2002. It is a Los Angeles-based non-profit organization dedicated to bringing awareness to gender disparity in the treatment of pain. She is also a frequent contributor to the National Pain Report.

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Dana Wirth

You are a Champion for the way you are dealing with your multiplying Cs. I am giving thanks that my two breast cancer battles are past and although I have been left with severe Post Mastectomy Regional Pain Syndrome after a left side lumpectomy and mastectomy, three tumors and several lymph nodes removed and 6 weeks radiation, I am cancer free. The stress of dealing with cancer and all it brings with it is bad enough without having one more crisis, this pandemic, thrown at you and the possibility of your all important life saving treatments may cease. It sounds like you have a wonderful team surrounding you which is a blessing. I don’t even have a decent doctor, he put me into withdrawal because he wrote my prescription wrong andi refused to correct it. I’m stuck with him till this is over. This is the very first time I have actually found something good about being a chronic pain patient, I have lots of practice with sheltering in place, it’s standard procedure for my daily life. Added to my PMRPS I have many serious issues with my back all with words I forgot how to spell but they just mean muscles and nerves are in revolt, discs are bulging, disintegrating, and it’s a general painful mess. My days are spent moving from couch to Lazy Boy to bed with my two cats as companions, so you see I am practiced at never leaving the house except my monthly grocery shopping trip and doctor visit. Not ideal but at least not a shock to the system and the only anxiety, would there be toilet paper at Wal-Mart? 😼💜

Janet Herschel

Hello Cynthia – I am really feeling so bad for you. I have cprs also and have had similar constipation woes. The pain is similar to childbirth, I had natural childbirth 4times. Maybe worse as it takes so long to resolve. I’ll be praying for you thru your so difficult treatment. You are very resilient and inspirational. Keep up the good fight. Janet in Pa

carolyn

Hi! also cancer patient with fibromyalgia, neuropathy and all the rest! You are a blessing to us all! So right that those of us who have been isolating for years have the edge during this Covid-19 crisis! I am also 80 and live in a very protected HUD facility for seniors, so feel safe except, of course, for the trips to hospital for phlebotomies wearing masks, goggles, gloves and then tearing my clothes off for the hamper & shoes off and sprayed.as soon as I return home! Dying doesn’t worry me; being really sick does! Take care of you!

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Mosie

Dear Cynthia, I find your beautiful writing to be inspirational. My illnesses may not be identical to yours, but they are quite painful. We’re blessed to have you.

Bruce

You really are something else, Cynthia. In another life you probably would have had multiple passions, and I’m sure you would have been roped into contributing articles for a women’s health/lifestyle/book review/current events/entertainment blog or magazine and been notable in your genre.
Or maybe you just would have danced. And swam. And walked and ran. Without pain……❤️😢

Penny J

Dear Cynthia,
Showering you with prayers, blessings, and gratitude for continuing to share your incredibly courageous journey. Please know you are surrounded by so many of us who love and care deeply.
Take care! Stay strong! 💚🌷🙏🏽

Beth

God’s Blessings through every moment in your life. You astound me with your strength, your ability to reach into every heart and make the pain lessen. Whenever my life seems like just too much, which it does a lot- I think of you and your brevity, with your wonderful touch of humor, and I think, “I can do this”. Thank you. for being all that you are to so many..

Wendy

Prayers for you. For constipation, if you can’t tolerate miralax with metamucil, try two or three meals daily with bean. Try non-fat refried beans and brown rice with red or green enchilada sauce and nonfat plain yogurt mixed with salsa (I like chipotle) instead of sour cream to top. A healthy salad is chopped cabbage (buy pre-cut) chopped red onion, 2-4 cans rinsed black and or pinto beans, sauce equal parts non-fat yogurt and salsa of your choice (also add cumin, garlic powder to taste). Make each recipe your own!

Pat E

God bless you

Lisa Hess

Hello Cynthia, Again, another story from the bottom of your heart. Though I’m not on Chemo I am on a low dose of opioids (CDC MME 90). I’ve always suffered with constipation since I was a kid and for the past 14 years, like you said, “I feel like I’ve giving birth” is all too familiar with me. In 2016 I was being treated for Chronic Lyme with IV antibiotics. When my Infectious Disease Doc told me that it will most likely give me diarrhea I said “YEAH!” Unfortunately, it didn’t happen to me, just made me more constipated. He asked what I used for it and I’ve been taking Senna tabs for years because it is vegetable based. He told me to add Citrusel because it is soluble fiber. Works like a charm on most days. I hope this helps you. Please STAY SAFE, STAY AS WELL AS YOU CAN. I’m always on your side!

Maureen M.

Dear Cynthia, Unsinkable!! Yes (we) you are!!!! Your inner strength never ceases to amaze me.
When you described your constipation I knew exactly what you were feeling and wanted to tell you stop all that docs tell you to use and take Magnesium (if you can) and greens! And then…there you wrote that your integrative doc instructed that. Bravo to him! I’ve taken Mag 400mg every night for years after having had severe constipation which resulted in a very painful small bowel infection.
I continue to feel for all that you are going through…so much more on your already full-plate! and I keep you in my prayers. I thank God for John and all of the other Angels around you…for you are very blessed in that regard. You have an amazing support system.
I’m so sorry that this darn pandemic hit at this chemo time for you! I wish I could take all of your woes far away.
Well, we women fight all challenges that come our way and somehow manage to keep on keeping’ on!
Stay strong mega Warrior and feel the LOVE coming your way. You are my hero! Maureen M.

Suzy Holcomb

Dear Friend, my heart aches for you & pray for you. Having RSD/CRPS is no fun as it is; but, to be compromised with the big “C” surely is overboard for us for sure! Hoping there is light at the end of the tunnel for you & your treatments will aid in your recovery. Please keep me posted.

Marla

Thanks so much for the update! I was thinking of you and worrying. I get your constipation problem. Been there!! So glad you’re getting your accupuncture weekly!! No idea what these people are complaining about isolation! I only got out 2 days a month max usually it’s one day a month! We are of much more creative and strong stuff! Wouldn’t it be nice to be weak again and have it be ok? Sometimes I wonder!

I’m your soul sista of C’s: Chronic Pain for 2 years, Cancer (Her2+ breast)
Chemo- if the day after shot of Neulasta causes too much bone pain, ask about a half dose.
Constipation – mine was so bad & bloody my Onc ordered a colonoscopy. Found many, many pre-cancerous polyps

I pray that you are able to get through your chemo schedule without delay Cynthia.

Audrey Lynn

Cynthia,

I continue to admire your determination, resiliency, and strength. I can’t have anyone with me at my chemo treatments, but luckily my friends are only a phone call or instant message away, and I’m still ambulatory. The hospital was definitely a much stranger place this time, with a bevy of masked faces and gloved hands to wade through before the woman parked in front of the waiting room door swiped me in.

What a strange new world, eh? I’d tip my hat to you, but the rest of my very, very thin hair would most likely go with it.