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.

Featured image: ID 166312962 © Pedro Antonio Salaverría Calahorra | Dreamstime.com

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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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Larry F

Condescending, no. Just shocked. Cancer cured in one week, while CRPS lives forever. I have no problem with meditation as a coping mechanism, but a one week miracle Cure? I’ve never seen a bullet obliterate stainless steel, yet fail to penetrate balsa wood.

JaneF

I agree with “Living with Grace”, LJ Coach was condescending in responding. Cynthia, I have GREAT admiration for you and your journey that you so graciously share with others. ANYTHING that works for you, helps at all, please continue to do. As I am blessed to still continue my life, CRPS and osteoporosis, are factors I’d rather not have to deal with, but I must. I’ve just found out that the meds for the osteo will be very, very hard to quit taking, but my last dose really has done a lot of bad things, physically, to me. Now, what to do?…but, Doctors are mortals, and some are really great, and some, not so much. YOU are your best advocate for your health, research with everything you have available, and make the best decisions for what is BEST FOR YOU. Thank you, and KNOW, your story means so much to so many; we care. May God richly bless you and continue to give you strength to face each day, and include a smile along the way.

living with grace

Frankly, I am troubled by the comments of LJCoach. This woman is bravely sharing her entire experience openly for all to read/learn from. Yet the take away from this person:
A. that she should be done w/acupuncture by now
B. “magic” stones (aka treasured items from loved ones) are baloney

Unless you try everything for your chronic illnesses, you won’t know what works and what doesn’t. These kinds of opinions are common, but they have no real place in a discussion about all possible avenues of healing. If you close yourself off to potential options to reduce the *ongoing* symptoms of a serious illness like CRPS, you do yourself a disservice. If you’d rather leave your life/future health in the hands of a doctor, I say good luck to you. Thing is, most people are realizing that these days especially, docs just don’t have the time/level of knowledge to provide the level or care needed to best help them.

This kind of negativity targeting someone who’s quite ill, dealing with CRPS & cancer concurrently ?! It’s simply not ok. It hurts rather than helps. Please, try and do better by your fellow patients LJCoach. Be supportive, or maybe just maybe, you could be silent next time…

Cindy too

Thanks so much for sharing this, and best of luck in your treatments, both alternative and conventional.
I know an oncologist that I wanted to sue over 20 years ago, for failing to even talk to a doctor I’d found who had discovered/invented some type of special diet plan to keep up the weight of cancer patients, and keeping up the weight kept them alive during treatment. My BIL and sister listened to her, and he died.
Maybe, probably, he would have died anyway — esophogael cancer discovered late — but, I spent countless hours researching alternative treatments and this one was supplemental to conventional treatment, and her refusal to take 10 minutes to talk to the doc was beyond disgusting.

For anyone interested, the diet doc was in Syracuse. That’s all I remember.

Margie

Yes, doctors have the power to heal but also destroy by unintentionally ignoring their patient or use scare tactics. I fallen for tactics of cures of much improvement in health that never came and great deal money for me lost in the scheme. And scared into a surgery and still suffering complications from surgery with surgeon ignoring my pleas for help. Too bad their not true healers but business people in health care. I am so glad you regained to be positive and sad you still have to deal with a doctor who is self centered but doesn’t relize her negative effect on patients. Dr. Shula is superior doctor to stay on the phone that long to encourage you. What a blessing you have to have him. Best of luck to you. Stay strong in mind, body, spirit.

Kristen

Cynthia,I’m so sorry to hear that your Oncologist upset you.She should be lifting you up with positivity rather than her negative comments! I understand how upsetting this was for you and shame on her,but please try not to allow her rudeness to rent space in your head.You don’t need to be exposed to toxic people.You continue to be such an inspiration to so many of us with your positive attitude,bravery,kindness and wisdom.You know your body better than anyone else and you also know what approaches are best for you.Keep on fighting Cynthia! You can do to this! Sending Blessings,hope and Hugs your way!

Deborah Jacobus

You frikken GO Cynthia!!! You are an encouragement and inspiration…Thank you

Mike Swift9n

Dearest Cynthia,
I was deeply touched by your column. Twenty-Six years ago in 1984, I had to endure watching my mother suffer from breast cancer, lymphoma and the final defeating blow, which was an in-operable brain tumor. Her oncologists were nothing short of heartless executioners- delivering multiple death sentences, all exuding not a trifle hint or twitch of compassion in their facial expressions.
Your Physician was right, you are an empowered responsible woman who is selflessly willing to share your personal treatment plan that I believe will open an entirely new alternative much more effective than ‘western medicine’. Many patients in this research have set aside this precious time everyday to meditate, concentrate and ‘imagine’ that the tumor (s) inside them are being ‘eaten away’. I witnessed seven patients in one experimental trial completely ‘eradicated’ any diagnosed and confirmed growth/tumors inside of their bodies.
To battle any cancer diagnosis takes great courage. You are a brave woman to embrace what you are doing, and i believe in your approach and treatment plan, because you are commuting your death sentence and exchanging it for LIFE…a long, healthy, happy and abundant one.

LJCoach

35 yrs all limb CRPS. Last 10 yrs I’ve meditated. Eat healthy. Push physical workout twice weekly. Before I invest in the one thing lacking, the magic stones, just one question: Why do you still have need of an acupuncturist for your CRPS? Is it the only affliction, or one of a subset of diseases, that doesn’t respond to loving kindness after imparting its wisdom?

Cynthia

What a great article! Thanks so much for posting it. I’m tempted to say, “fire those allopathic drs you have”…but there would just be more of them. I’ve been reading your posts for a long time…always full of light and wisdom. Don’t let anyone tell you how to do this. You are many steps ahead of these fools. They will never understand your approach to life because they can’t see what they themselves don’t have. God bless you and keep you.

Good for you !

LMC

I’m sorry that your oncologist was so embarrassed at being caught not being aware of your actual case progress that she lashed out with fear tactics. I’ve had doctors that walk into the room and ask me to remind them of the notes they are supposedly reading in the file/computer they are skimming in front of me. Then they start rambing off protocol suggestions and then I have to remind them why they had already decided against that particular protocol. While I don’t expect to be that doctors only patient, I do expect them to peruse the notes they wrote in the hall right before they walk in to meet with me. Since I’m usually waiting a long time anyway, what’s a few more minutes to make themselves look like know what they are doing?

Good luck with your journey and stand your ground! Its your like and your decision!

Kris Aaron

The older I become the more I learn that many doctors are incompetent buffoons at working with their patients. They see us as machines to be repaired, certainly easier than treating us as fellow humans with hopes, dreams and lives. We are a textbook problem with one right answer, and our preferences get in the way of meeting their goals.
Perhaps it’s time to fire your oncologists and move on to physicians with a little more sensitivity and compassion. Or at least give them negative feedback when they treat you as a “thing” rather than a living being.
“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…”
That’s a doctor with a major problem. He needs a lesson in the medical ethics of terrifying patients, as does Dr. Shelley, who responded with “more than a hint of irritation when I went into detail about my daily, two-hour healing ritual”. Those two have not yet fully stepped into the roles they’ve carved out for themselves as wise, all-knowing healers of the human body.
Shame on them! And hugs to you for finding your own path through this dark time!
Trust yourself and ignore the “mechanics” who see you as little more than a car in need of an engine rebuild.

Gary Lacy

I was so thrilled to read your story until the part where the oncologist destroys your positive feelings with fear. What a shame, and I am so sorry you had to hear her negative remarks.
I got an HIV positive diagnosis in the early 80’s and was told I would die very soon. As my friends were dying on a daily basis, and there was yet anything to treat the virus, I could have begun to think I was dying as well. I was referred to a wonderful doctor who soon became a very close friend. As the months and then years went by, I did not die or even get sick. I lived “the bodybuilder lifestyle” which meant I ate healthy, exercised six days/week, and got my eight hours of sleep without fail. I was at my doctor’s office for my monthly check-up and had decided to talk with him about why he never checked me out. He did not feel my glands, look down my throat, look into my eyes, and the host of other things normally done by most doctors. He looked directly at me and said, “I don’t need too”. I am looking at all of you and you are the picture of health!” Your energy, bright eyes, shiny hair, etc. all tell me what I need to know.” I have never forgotten that day, and his words of wisdom. Throughout the last 30+ years, I have often been told that I was going to die because I have HIV, or whatever else possesses some medical professionals to decide my end. I just think about my friend and his wise words that day and keep putting one foot in front of the other!
Sounds like to me you know how to take care of yourself, you know your body better than anyone else, and you know how you feel. Stay strong and positive! God Bless you!

Typical western medicine ignorance. It amazes me how cancer patients are fed a cancer-feeding diet by oncologists. Possibly job security? No, not really. I don’t believe they are that evil. It’s just that they don’t teach healing in medical school, only procedures that carry the disease on. People need to search out and go to natural medicine doctors if they want a cure. That’s what I was, and the government shut me down because my patients never had to go to Rick Scott’s hospitals.

Maureen M.

Since it doesn’t say… I’m imagining this is from Cynthia. Well, first I want to say that I am very proud of you for all of the ‘positive progress’ you had made before that call with Dr. Shelley. Im so sorry that this knocked you back BUT I’m confident that in a short time you will get back on track, especially given that you have such a great support team that you consistently lean on. Big Kudos to Dr. Schultz for bringing you to a world of light and healing.
Plus, the fact that you are exercising and swimming through your aggressive treatment is truly amazing!! So yes, keep your focus on all that you can do, one week at a time.
Keep strong Cynthia. You got this!! I see an energy healer, meditate etc etc for my Chronic Pain issues….and I’ve proven to myself that it works and has brought my body a long way.
Hang on to what you ‘know helps you and is working for you’.
You’ve been through this before in other ways over the years…so…
Give yourself the time to reprocess and move on again but… please Don’t give up.
Sending care, love, more light and healing hugs, Maureen M.

Laurie

Always remember; Western medicine is mostly interested in making money. That and keeping the status quo going because if people found different way that worked, there could be amazing lawsuits.
Sorry, but I NEVER wanted to interact with Western Big Medicine. Unfortunately my genetic code had different plans…..
Cynthia, your oncologist doesn’t know you, dismiss her from your mind however you can, keep your anger as instruction, tho.
Love, Laurie