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.
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 talk to my doctor about taking a small dose of a beta blocker. He explained that the medication could 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.