Flowers for Malignancy

Flowers for Malignancy

Last month I wrote about a lump I found in my breast and the subsequent mammogram and ultrasound pointing strongly toward cancer. This bolt of lightning has taken center stage in my life – and I’m going to keep writing about my gut-wrenching experience until it resolves one way or another.

Soon after writing my first post, stabbing pain at the site of my tumor seemed to come out of nowhere and the severity was straight from hell. Anytime I accidentally brushed against the area, the allodynia was so severe I would scream, and I became terrified that the ultrasound had spread my Complex Regional Pain Syndrome.

Cynthia Toussaint

Since my three breast cancer doctors had alerted me to the fact that they know nothing about CRPS, I called a wonderful colleague, Dr. Wayne Jonas, because he understands high-impact pain and his wife has survived breast cancer. That proved to be one of the smartest calls of my life.

After letting me vent and spew my fright, Wayne calmly explained that, while the procedure had initiated a problem, the main driver of the pain was my fear and the cortisol that was shooting through my body in response. I was stunned that my thoughts could generate so much physical suffering. I mean, here I am, a woman who’s had high-impact pain for almost 40 years and a strong advocate for over two decades – and I never really got the mind-body connection until that phone call, a conversation that seriously calmed me.

When I told Wayne about the biopsy that I was leaning toward having, he again steadied me by countering my statement that “my doctors are sure it’s cancer” with “doctors can be wrong!” This gave me a wellspring of hope. Wayne then suggested that to calm my cortisol during the procedure, I take a small dose of a beta blocker. He explained that the medication would stem the physiological component of my fear, better known as my fight-or-flight response. To my great surprise and comfort, that evening my pain was reduced by at least 75%. Wow, all because my mind had calmed!

After going back and forth a thousand times about whether to do the biopsy, I chose to forge ahead. It just made good sense to know whether I have cancer or not. And if I do, it could well be the hormone receptor positive variety. If so, my doctors have agreed to treat me with only medication. Nothing invasive, nothing that can spread my CRPS. If it’s another type, I’m up s#!t creek.

My biopsy was scheduled for yesterday, and I was told to be as positive and stress free as possible leading up. As fate would have it, though, I’ve had two recent over-the-moon upsets. My mother’s very ill and her symptoms include paranoia and delusions. She phoned me out of the blue last week yelling out of control and accusing my 39-year partner, John, of something nonsensical before yelling more and hanging up. When she gets on these jags, I can’t take her calls. My stomach aches and I get very lonely for the loving, beautiful mother who once was.

On Monday, almost unbelievably, John got a call with the news that his saint of a father had passed away from a heart attack during the night. These were the two family members who have steadfastly supported us post-illness. And the loss is beyond words.

With deep support from John and my good friends and colleagues, I plowed ahead with the biopsy. I was terribly afraid, to put it mildly. Despite all of my resources, including a stellar team at the USC breast center, I was still hysterical that this procedure would re-ignite my CRPS. But at this writing, I’m happy to report that, though my pain scary spiked after the more-than-adequate local wore off, I’m sitting on a 3-4 with no amp’ing in sight.

Also, literally during this writing, an elegant bouquet of roses and orchids was delivered, sent from my wonderful choir community (I set the flowers next to the many cards I’ve received.) And I just got a compassionate check-in phone call from my USC care coordinator. Friends are checking in with inspiring notes, pretty pictures and handmade gifts. Also, girlfriends are offering to stay with me when John leaves town next week to handle his father’s affairs. This big love and support means the world.

But… yes, there’s a but. This care about my probable breast cancer also unsettles me. I’ve suffered for 37 years with severe pain and fatigue, twelve auto-immune diseases with accompanying anxiety and depression, extreme social isolation and loneliness and my life uprooted in most every way possible. For this, I was abused and abandoned. Never during these decades did I receive an acknowledgement of my illness, let alone cards and flowers.

I guess I finally got the right disease. In fact John took me to lunch after my procedure, and a woman waiting in line was wearing a bright, pink ribbon. I pointed it out, telling her that I’d just had a biopsy. Her expression turned to concern and she rested her hand on my shoulder, telling me about the great advances in breast cancer care. She ended with “good luck” and I knew I was now a member of the pink ribbon club.

Before all hell may bust loose, I’m using my new plight as an opportunity to educate my breast cancer healthcare professionals about pain, the disease and how much we suffer… without flowers and cards.

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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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Lidia Carr

It’s unfortunate that you have are a chronic pain sufferer and a real scare with a breast cancer biopsy that sent your level of pain into another dimension of horrible pain flare. You had a wonderful man that supported you and walked you through it as you got the courage up to get this important biopsy. Unfortunately for many breast cancer survivors who’ve been through the gambit of surgery hell and told everything will be fine. Mastectomies are no big deal and you (me) was told that all will be fine. I had a good job and was working happily for 35 years. I had my bilateral mastectomy in July 2015. We as patients are traumatized getting a diagnosis with breast cancer. What makes it even more horrible is being diagnosed with a very painful condition called post mastectomy pain syndrome. Doctors and surgeons claiming they don’t know what is wrong and trying to a pain doctor to believe in you. Post mastectomy pain is horrible and breast cancer pink celebrators need to stop! 10-30 percent of women that have mastectomies end up with this disabling pain that has no cure. I’m
So happy that you are cancer free. Post mastectomy pain is a condition that many are not aware of. We are told that we need to suck up this pain by the surgeons who already know what’s wrong and refuse to diagnose this condition. It’s one of the most evil pain a woman can experience.

Please know there is no such thing as “probable breast cancer.” It either negative or positive and as I told you in my e-mail – don’t worry until you need to. You will be fine either way. Our minds play terrible tricks so be careful how you think.

Yes, they need the education. I may be a member of the same club – just at the beginning of the process for me, as I was off of yet another medication and feel my pain rise. I’m at a 9+ right now. Don’t know how I’ll do this.

Rose

Well written, Cynthia! I, too had an episode with cancer, (over twenty years ago, another story, but doing well ;-)) And, like you, have received plenty of grief regarding my invisible illnesses. I believe that for some people acknowledging what can’t be seen is scarier to them because a.: they don’t know what to do for you, and b.: it reminds them that they, too could fall prey. If they could ‘talk’ you into being better, they feel less helpless. I won’t say I’ll pray for you, because I’m not a believer and I don’t pray, but having read many of your posts, I know that you are a strong, beautiful, determined fighter, and I wish you continued strength (but it’s okay to cry.) I had an abnormal mammogram a few years ago that required follow-ups, and my first thought was, “Wow, if they take one, they can take them both. I’m SO DONE with them! They did their job nursing babies and (ugh!) attracting man attention, and I’m tired of shifting them around to get comfortable in bed!” But those girls are still with me. Your journey continues, and I find inspiration reading your posts and look forward to many more of them. Love and blessings to you.

Barbara

I had invasive breast cancer about 9 years ago. I could not opt for radiation because with severe CRPS in my arms, I couldn’t hold my arms in the position needed for that treatment so my only option was a mastectomy, no muscles removed. I tried to have the anesthesia to include ketamine but Ithe doctors did not cooperate with any CRPS treatment so of course, I woke up in screaming pain. Over 32 years of CRPS and that is the only time I screamed in pain so be careful if you must have surgery

Cynthia’s article offers some well grounded insights into the emotional dimensions of chronic pain — and the education which doctors need to truly assist people in pain. Thank you Cynthia.

I have pushed this to my networks in social media

Laurie

YUP. Everyone knows cancer, but they run from things they don’t understand. AND people listen to the prevailing op-eds far too much for comfort…for us anyway.

Cynthia, I DO hope that you have the least amount of interference with your already terrible conditions ( how did we get here?) as possible.
As they say “whatever will be, will be”.

I’ve stopped fighting. I’ve fought all my life for one thing or another to try to make this world a slightly better place, keep my health and remain sane. Now, I’ve accepted that there are so many things I cannot change.
I do wish you the very best

Rochelle Odell

I am so sorry Cynthia.😢 Please stay strong and positive. You are in ex Ellenton hands. Many prayers for you and John.

Wendy Paley

Dear Cynthia, I will be praying for you to get good news from the biopsy you had done yesterday! Thank you so much for all the hard work you put in to help the chronic pain community. I am also so sorry to hear that your partner lost his father. It is so difficult to lose a parent no matter what age you are. My thoughts and prayers are with you both.

Kristen

Cynthia, First Thank you for all you do.I am sorry for all you have going through.I am happy you will not have to go through this alone.You have a very supportive group of people who will help carry you through especially John,the Love of your life.I am so sorry to hear about his Father.Sending my sincere Condolences and Prayers to you and John. Wishing you strength and peace during this difficult time. Kristen

Judy Toth

Wishing you the best Cynthia. Thank you for all you do for the high impact pain community. Can you share your dr at usc?

Virginia

Oh, Cynthia, I’m truly sad what you’re going thru, my dear, but remember; you’ve come thru so much already, so don’t let this one hold you down. It’s hard not to worry, and worry does make it harder on you and your healing process, and your body responds in reaction to worry in ways that make it harder to get thru what you’re going thru. I’ve been praying for you, my dear. You’ve done so much for others, and sometimes when we help others, we in turn are not only blessed, but our faith may be tested now and then, for when we are weak, He is strong. I don’t know what your beliefs are, but mine are in Jesus, and He told us in this life we would have tribulation, but be of good cheer, because He has overcome them all. If we lean more on God, and less on ourselves, and on the doctor’s predictions, then we have His peace, and worry then, we can give to the Lord, and trust that He is in control and all things will work out for the good. His ways are not our ways, so at times it’s hard to understand why this, and why me.
This I’ve learned from my many years on earth, and my many years of suffering. God bless you 🙏

Dave

Cynthia, I’m sorry you’ve had to carry so much pain and stress for so very long.
I’ve definitely noticed the connection between how my emotions triggered by my thoughts increase my pain.
I do consider some folks not directly involved or suffering at times over play this connection. What will potentiate a condition has in my experience been confused with causation. A simplified reason seems much more palatable for some folks even some with professional credentials.
I wish you all good fortune moving forward with your biopsy however that may turn out.
As you’ve written, cancer is what’s known in some circles as a casserole illness. Not many people get much sympathy, or a casserole for living in pain.
I wish you kindness and peace.

Maureen M.

Excellent and interesting point Cynthia (in the BUT section)! I wish you the best and pray for your Bx. to be negative so that you can put that behind you. My sincerest condolences to John. Keep strong. Maureen

Wishing you the best of luck. Stay strong lady – you’ve made it through everything else. I know it’s scary, but prayers coming your direction.