As many of you know, I’ve had high-impact pain for nearly 40 years and am now fighting triple-negative breast cancer. The only reason I decided to move ahead with treatment, despite its many serious, even life-threatening risks, is that I’m doing everything integrative (aka, whole-body.)
Along with wonderful colleagues who are champions of integrative care, my treatment is headed by Dr. Aaron Schulz, director of a leading medical school’s Integrative clinic in Los Angeles. At my first post-diagnostic visit, Dr. Schulz went way above and beyond what’s expected of a practitioner. First and foremost, he advised me to pay no attention to the survival numbers as I was going to do everything integrative, thus enhancing my chances.
Dr. Schulz further calmed me by steadily stating that we were going to take cancer on like every other diagnosis. Smart, informed and one step at a time. “Cynthia, I don’t want you to feel like most cancer patients, living in the grip of fear.” The two wonderful nurses there came in after Dr. Schulz with hugs, tears and encouraging words. This clinic quickly became my weekly “safe place.”
At the appointment, Dr. Schulz and I mapped out my integrative cancer fighting plan, including goals with diet and exercise, daily meditation, supplements, sleep hygiene, frequent low-dose infusions, release of toxic people – and to ward off pain, acupuncture before every therapy.
This integrative approach worked so effectively I stunned my oncologists when on week three, after a medical exam, my breast tumor was deemed gone – and my swollen lymph node was quick to follow. I told my doctors that, upon self-examination, my tumor was gone after only a few days, but I think that was too miraculous for them to accept. Bottom line, I’ve sung the virtues of integrative care for many years with my advocacy work, and I’m convinced more than ever that it’s the only way medicine should be delivered. Period.
And then in a moment, my integrative house of health came tumbling down.
Last Tuesday, Nurse Brandi called to alert me that she was canceling my next day acupuncture appointment because I wasn’t covered by insurance. After my initial shock, I was further stunned to hear her say, “You’re not covered for acupuncture here. You can come in just twice a month for massage and cupping.” WTF? I have no clue what cupping is and, as a woman with full-body CRPS, I doubt I could ever endure a massage. Brandi’s head’s up was ludicrous as I’ve been receiving acupuncture from Dr. Schulz for twenty years. All the more pressing now as I’m fighting for my life.
I panicked. I was even dizzy. For the first time since my diagnosis I was in the grip of fear. Frightened and betrayed, I asked Brandi to have Dr. Schulz call me. Ten minutes later, this deeply troubled healer explained that he’d been giving me acupuncture all along “off the books” because my body responds so well. Unbeknownst to me, Medicare doesn’t cover acupuncture. Dr. Schulz went on, “Someone at the front desk made an issue of this. Between you and me, Cynthia, I’ll keep giving you acupuncture, but I can only get away with treating you twice a month now.”
Despite Dr. Schulz’s rare compassion, this bureaucratic disregard for my well-being, and indeed my life, has put me into a very negative emotional space. Since that phone call, I’ve been unable to get a good night’s sleep, and have slipped into a depression, my first since cancer.
To make matters far worse, I’ve lost much of my hope. I had my first non-accompanied acupuncture infusion last Thursday, and the result has been a torturous, pain-filled week. Post-infusion, my lower body immediately got scary heavy which quickly turned into a steady level nine pain. When I walk, my right knee feels as though it will buckle – and when I try to swim, my legs shake uncontrollably. Also, my new chemo symptom, neuropathy, which Dr. Schulz was keeping at bay, has gone off the charts.
Yesterday, I was scheduled for my eighth infusion, but I canceled. I’m terrified that if I continue chemo, half the time without Dr. Schulz’s effective healing, I could well end up with enough new high-impact pain to destroy what’s left of my life. That, and I need to lick my wounds. My safe place has turned into a place of distrust and unwellness. I need time to grieve and reconcile what’s happened before making a decision as to how I can best move forward… or not.
Chemo with CRPS is effing torture. In fact this is the roughest, most grueling suffering I have ever endured. And an unfeeling, demoralizing, illness-inducing healthcare system makes everything a gazillion times worse.
I cried today because I feel so very sad, for me – and for others. You see, for nearly 20 years at For Grace, I’ve been telling Women In Pain to go integrative. I now feel guilty and culpable of disregarding the blow-back about some of it not being covered. I’m angry and concerned that I’ve adamantly given advice that couldn’t always be followed, and maybe I’ve caused women in need of healing to feel left behind.
There’s also the issue of my life. Is there a way to get the integrative care I need to survive being poisoned for another 5-11 weeks, especially since side-effects are cumulative? Mostly, as I sit here typing at now a level 10 pain, I abhor the health care industry for its gross dysfunction and black heart.
Yesterday I spoke with my beautiful mother about my cancer care – but fibbed about being more optimistic than I am. Despite advanced dementia, her loving heart reminded me, “Cynthia, ever since you were a little girl, whenever you made a decision and put your mind to it, you always carried through completely. I think you’re going to make it.”
Who am I to argue with Mom?