Cancer “Healthcare” Leaves Me in the Grip of Fear

Cancer “Healthcare” Leaves Me in the Grip of Fear

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 of a leading medical school 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.”

Cynthia Toussaint

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?

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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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Audrey Lynn

I just had my first chemo treatment last Thursday, as initially I responded well to tamoxifen, but then things started spreading and growing back. I know that pain of which you speak – Friday I slept all day, Saturday wasn’t too bad, but then Sunday all the dead cells hit my bloodstream and oh Lordy loo, I could not handle it. Had to work through it, but I was in bed curled into a ball for the day.

Slowly feeling a skosh better at a time, but at least it’s something. I hope and pray the same for you, that no matter what, you will forge ahead, even if it’s an inch at a time. Know that you are loved by many, and let that love help lift you up when you need it. 💜

Thomas Wayne Kidd

I am so sorry about all of this. You’re in my prayers.

Indeed, I have NEVER known you to be a woman who disagreed with your Mom — & that was her sweet spirit talking that isn’t affected by ANY dementia. I am so sorry for the very frightening premise of what you are facing. But, Cynthia, there is one thing — only one, that is stronger than any and EVERY despicable bureaucracy that could stand in your way — One whom I spoke to about you this morning: Creator God, the GREAT I AM who IS on your side, just like your mother. God can – and so often DOES -“Make a way where there IS NO WAY.” You & I are proof of that. I LOVE YOU and I am FAR from the only one, Beloved! I don’t mean to simply sound like Pollyanna, but I’ve found that if I don’t purposely focus on those things that help me to overcome, it is too easy to get overwhelmed by the gravity of things. SO I truly hope you don’t think that I am making light of all the stressors that have hit you so hard over the past week or two. I would just HATE to make it worse for you. I love you Cynth! MUAH!

Jill

So sorry you are going through such a difficult time. But I agree with Jamie. You integrated approach to pain management is simply not possible for most of us. I have spent literally thousands over the course of my 30 year pain journey., none of which were successful and leaving me pretty much broke. Unlike you with your loving ,partner, financial means , and support group, integrated care is not viable to those of us poor and alone. I hate that you have to battle cancer and have had this set back. Please be strong, know that you are admired for your courage, and prayers for you are said daily💕

Lynn Arthur

Dear Cynthia…

Our health practitioners take an oath to heal the sick. It’s a sin that insurance companies aren’t required to do the same. And in your case…you no longer know which of the two will continue healing you. Much love and understanding ❤️

Rochelle

I am saddened at the downturn of your care, what had been working very well suddenly ceased. I believe you taking a break to lick your wounds as you stated, is probably the best for you so you can take a deep breath, not even think about your battle for a few days, may be what you need to get back up in the proverbial horse and forge ahead. You are a fighter and I know what’s it’s like when you hit that wall and despair kicks in. You are in my thoughts and prayers.

Jim

Cynthia,
So sorry to hear you lost something that worked so well for you, praying for you.
Jim

Jamie

So sorry for what you’re experiencing, but this is a way of life for millions of us. I’ve never had an insurance company willing to pay for alternative therapies. I tried. I went to twice weekly massage appointments, chiropractors and more, but 6 weeks later the bills started arriving for the full cash pay amount because these services just arent covered. I’ve been repeating this for 2 yrs now, ever since the pain medication crackdown began and the alternative therapies push started up. If you’re well off or just have money to spend it’s a great idea to explore these options. However, they arent covered in any amount by most insurers and those who do allow coverage only pay for a percentage (which is never 100), limit the number of visits and if course charge patients with copays for every visit. Attempting to do anything like the strategy you’re attempting for your illness is not just prohibitively costly, but flat out impossible to afford for many if not most normal people. These therapies, even if covered, come with copays for each visit. These treatments need to be done weekly or more often. Even at a low rate of $30 that can add up to over $100 a week in just copays and that’s not including what gets left over that insurance doesnt pay. Suddenly a person is spending $500+ out of pocket monthly on these therapies plus making payments on what wasnt covered. The next step is a medical bankruptcy.

After saying all of that what I can tell you is this: pain patients deserve treatment of whatever type is available to them, including financially available. If all a person can afford is a single $30 prescription every month then that’s what should be done regardless of the current hysteria over pain meds. Addiction rates among pain patients are proven to be low. Pain meds are proven to work. We shouldn’t suffer just because we cant afford other treatment options.

I’m happy to see that you’ve realized your mistake. However I hope that you further consider it further.

Katie Olmstead

Hey Cynthia,
I am sorry for all this suffering, of body and soul, but I know you. You’ll figure this out. The part that is awesome to me is the fact that acupuncture before an infusion makes such a big difference. Of course, as you said, side effects can be cumulative, so you can’t really know, but if it’s working, that’s huge. Put your fight into insuring that you can have acupuncture before each infusion. That’s the task. Can that mean that you have infusions more spaced out? Or can this lovely generous doctor find a different work-around, like a nominal payment so that he doesn’t get in trouble with his front office? Of course it is insane that we are all burdened with a broken medical care system but that is an aside. Get that acupuncture! And no, not from a community center or some other practitioner. There are many kinds of acupuncture. You need to stick (ha ha) with your guy, no one else. Rooting for you, kiddo!

Heather

One day at a time and one foot in front of the other. Remember to breathe. Self care takes effort and our minds can be an enemy… Maybe set a priority to work on what calms you, and moves you away from the thoughts that are feeding more stress into your situation for now. Often when I am calmer, another path forward starts to emerge when things had seemed impossible when my thoughts had kept me mired in the thick fog. You are priority number one. Focus on finding joy for now and look for the simple things to practice gratitude about if you can. Then try a fresh look at the situation after you are in a state of mind to let yourself regroup.

I don’t respond as often as I used to because my life takes a lot of energy but I felt very moved to try to reach out to you in hopes that something I say might help. I have been reeling and in despair with an all too busy mind, before, and my heart aches for the pain you must be in.

I also feel certain that you will find a way to move forward from here. Be kind to yourself. Be patient with yourself and your emotions and pain, but please try to gently guide yourself to calmer waters where roaring waves eventually soften into ripples.

Warm wishes to you.

Heather

Cynthia,
This is a setback but you can find a way through it. Don’t beat yourself up for what you have told others. They have found their own ways forward. I always apply what I can from what people have told me and I don’t blame them if I can’t apply the whole package of their advice. You didn’t know. There is an effort to get acupuncture and massage covered by Medicare. It is covered for me under my private insurance for back pain, and maybe for nausea??? I personally had a paradoxical response to it, feeling achy, sweaty and less well… the practitioner was a medical doctor trained in Eastern and Western medicine. She felt she had been too aggressive with the first treatment. In any case, don’t shut down but try searching for other supportive treatment options or maybe look into community providers? Maybe check to see if it is covered for another symptom or go through an appeal process. I am sorry you had this experience but I think I you will find a way forward if you can let go of the hurt that came with the disappointment of this revelation.

Take care.

Heather

Martha

Oh Cynthia, I am saddened to read this post. However, it doesn’t surprise me, at all. Take your moments to rage & grieve, and then please – carry on. You can do this. The U.S. medical system is so backwards for a supposedly 1st World Country. As you & many here also know, it is incredibly biased regarding women & women’s healthcare needs. I am struggling too, with 2 complex medical issues & for one of them, ME – most Drs. aren’t even taught about this complex, multi-system disease – so trying to find a knowledgeable Dr. is beyond exhausting.
The only way I can think to offer you even a crumb of hope is to cautiously and with love, suggest trying this: maybe when meditating, “try” to reframe your thoughts that having accupuncture bi-weekly is better than none and even as a good thing! Look at this change as gaining an hour+ every other week to do something new or different. Use the ‘gained’ hours to try something that you’ve always wanted to try. And yes, most of us have had our careers & finances reduced to ruin, so you are actually very blessed. It just might not feel that way some days.
So very glad you have such a compassionate doctor to help you through this battle, and a Mom, partner & so many friends who love you.

Maureen M.

Hi Cynthia, Im so sorry your care got sideswiped! Since Dr. Schulz was allowing your Acupuncture ‘off the books’ for so long (assuming that means free?) couldn’t his office work something out with you to even just pay a small fee to continue as you have been with your infusions?
I agree with your awesome mom! You are going to make it. You are blessed with much love around you…hang on to it. Keep strong warrior. Hugs!!

Rose

Dear Cynthia,

I am so saddened for you and others. Everyday I hear more and more about people being denied proper health care, never mind those of us with chronic pain.
Someone just told me Medicare was going to start approving acupuncture. Now I see that’s just a rumor.
Please start a Go Fund Me page!! I would be happy to contribute and I’m sure many others would too! You’re worth it!
You’ll be held in my prayers. And please don’t take on the burden of thinking you let others down! How were you to know these damn insurance carriers would discontinue coverage. They let them down, not you!
I’ve especially like what you share. Your brave, courageous and speak from the heart. I don’t think you realize how much hope you have given us. Now it’s time for us to give back to you!

Keep your bright light shining!

With much love and respect.

CarolynRombardo

Cynthia my heart goes out to you,…I also had breast cancer n its the fight of ur life.u certainly hsve enough on ur plate without ins. Stopping what did work for you…sadly this is the case for many in todays world..including..again ..myself..I will keep u in my prayers n wish u every luck ..plzzz keep ur faith…at times like this ??..we need it most…GOD BLESS…❤

Hayden

God Bless You Lady! MY families thoughts and prayers go out for you!