Sticks, Stones and Words That Hurt

Sticks, Stones and Words That Hurt

Last week when I saw my integrative doctor for weekly pain-curbing acupuncture, we had a conversation about my dangerously low blood count caused by chemotherapy for breast cancer.

Dr. Schulz was troubled that I’d followed the advice of my infusion oncologist and gone ahead with treatment despite my anemia the week prior. This healer reminded me that I’m in control of my cancer care – and strongly suggested that to avoid getting a deadly infection, I take a week off whenever my numbers drop that low.

Next day at the infusion center my numbers had indeed dipped further, and I was afraid I’d experience a fall due to dizziness. That was it – I was taking the week off to recover. My oncologist pushed back big time, strongly recommending that I carry on. I was taken aback by this man’s apparent lack of concern, wisdom, or both. He seemed threatened that I was making my own cancer care decisions, emboldened by Dr. Schulz, but finally relented once we’d made a “deal” that I’d do my full regimen next week.

The following day I had a tele-medicine appointment with my primary oncologist, a woman who I’ve met just twice despite the fact she’s running my chemo show. I insisted on this follow-up meeting as I wanted to know the woman who’s making life and death decisions for me.

Cynthia Toussain

Out of the gates, Dr. Shelley was stunned by how good I looked and how much energy I had after ten infusions. Her expression told me that she didn’t understand what she was seeing. So, I launched into detail about why I don’t look like her other patients. I eagerly shared that I’m eating a cancer fighting diet, exercising hard six days a week, working part-time, getting abundant sleep and keeping my stress level in check.

I could sense more than a hint of irritation when I went into detail about my daily, two-hour healing ritual; how I encircle myself with gifted amulets, practice gratitude, pray and do a guided mindfulness meditation about self-healing. I shared that before and early into chemo, during these sessions, I sent my tumor light, thanked it for its lessons and made clear it was time to flow out of my body with love.

When I gave Dr. Shelley the great news that my tumor was deemed gone by clinical exam on week three, she jumped in saying she’d seen this before. “It’s very rare, but not unheard of.” To set the record straight, I shared “Actually, the tumor was gone in the first week by my own exam.” She looked perplexed, then defensively took credit with a loud exclamation, “That’s because you’re doing a lower dose regimen more often!” Dr. Shelley failed to mention that was an idea I brought to her from Dr. Schulz for a better outcome with fewer painful side effects.

In short, my abundantly successful integrative practice was dismissed by this narrow-minded ninny. She went on with her marching orders of 18 infusions (seriously, that’s a hell of a lot of poison, especially with a dozen auto-immune diseases, low blood count and a pandemic) and surgery that would include removing the tumor margins and a sentinel lymph node.

I countered that I’d do my best to complete 18, but had not come to a landing on the surgery due to highly-probable CRPS complications and the strong possibility of getting lymphedema, a lifelong, painful side-effect caused by cancer treatment. I mentioned recent clinical trials that did biopsies for triple-negative breast cancer versus surgery with close to the same outcome.

Shelley bristled. Without hesitation, she sternly launched into, “If your cancer comes back, it’ll return in your liver, lungs, bones or brain – and it will kill you.” She got what she wanted, her fear tactic shut me down. I quickly acquiesced to her orders, and on that terrifying note we ended the call. I was up all night, beaten, depressed and in a severe pain flare, and the next day I stopped eating and meditating. I ended up dehydrated as I’d overlooked drinking fluids. I was a mess, no longer self-empowered or hopeful.

That night John asked me to call my psychologist, a breast cancer survivor, as I contemplated my end game. I’m deeply grateful I did because Debra was enraged by what Shelley had done. According to her, this doctor made a baffling move by jumping to the worst case scenario to frighten me into line. Still shaking, Debra calmly reminded, “Cynthia, this isn’t you. You’re a positive, empowered person.” She stayed on the phone while John brought me chamomile tea, and I nuzzled under my heating blanket. I slept straight through the night.

The next morning when I returned from my swim, Dr. Schulz called in response to my frantic email. He was equally upset and went against the health system he works for by sharing, “Every person with cancer hears these words in one shape or another from their oncologist. Western medicine leverages fear to keep their patients compliant.” He asked me to instead obsess on Shelley’s initial words about how well I was I doing, encouraging me to post reminders around my home.

Dr. Schulz and I talked for an hour which helped me reclaim some power. In that time, he reminded me that I’m in the top 95% of chemo patients result-wise, that I’m in charge of my care and that he and my oncologists work for me. Dr. Schulz strongly recommended that I not make any decisions yet about future treatment. “It’s too soon. Let’s take this one week at a time – and move forward depending on what your body and tests tell us.”

Damn straight. It’s my life and it’s my call. Still, words have power, and I can’t un-hear what that monster said. I’ve been crying a lot lately. Shelley got away with robbing me of a good chunk of wellness for sure and I’m grappling to regain my steady confidence. What a bloody shame.

Women in pain, we’re all damaged, even traumatized, by western medicine’s fear driven tactics. We grew up believing doctors had the ultimate power to heal us. Sometimes they do, sometimes not – but most often they fail us in their actions… and words.

Leave a Comment