Finding Chemo

Finding Chemo

I won’t sugar coat it. Fighting breast cancer with chemo is a nightmare.

After three infusions, I’ve grown accustomed to the weekend fatigue that will barely allow me to leave my couch. On infamous Chemo Day 3, after being up all night with aimless energy and a racing mind, I literally feel like I’m going crazy, as if I’m a stained-glass window that’s been shattered and I can’t quite figure out how to put the pieces back. The doctors refer to this symptom as “steroid induced psychosis.” I’m trembling, dizzy and dropping things. My spirit and joy for life are almost non-existent as I generally feel flat-lined emotionally. Being nauseous and rapidly going bald round out the experience. You get the picture.

On a positive note, my pain remains in check after a fear-inducing first week. With my initial infusion came a CRPS-like symptom known as myalgia. For several days my legs would get unbearably achy before amping to up-all-night, think-I’m-gonna-die pain. Terrified, I made an emergency appointment with my integrative doctor – and Dr. Taw’s reassuring nature and acupuncture treatment calmed my mind and body. As always, integrative medicine is my best healer – and my new chemo-induced pain symptom is gone.

Cynthia Toussaint

I’m happy to report that despite the trauma of chemo, all is progressing well. That being said, I’m certain that I’m suffering far more than need be due to the over-care of western medicine. This has always been my complaint with pain care – and now with cancer treatment, it’s the same damn thing. Truth be told, I think western medicine’s doing the cancer thing completely backassward. They’re making us patients suffer far more than necessary. It’s called “over-care” and it’s all about the blessed buck.

I got the first whiff of profit-motive after I had my port surgery (an implantable device that provides a direct line to the artery) – a procedure that blew up my CRPS so badly I strongly considered not following through with the chemo. After somehow surviving six days of hell, my infusion nurse on intake asked me why on earth I had a port. “For these drugs, Cynthia, we just go through the arm.” Stunned, I asked my doctor if this was true as he’d told me the port was non-negotiable. Chagrined, Dr. Lewis admitted to the deceit, but with the rationale “the port is much easier for access.” Sadly, my port isn’t working well, needing multiple flushings to clear it. And it may stop working altogether.

Another big money maker for this healthcare system happened when I arrived for my first infusion. After doctor appointments, procedures and preps, a nurse casually mentioned they’d forgotten to do a kidney work up and wouldn’t be able to start that day. I got the sense that this kind of screw up wasn’t uncommon. All I could think about was how much money they’d just made off of me – and absolutely nothing got done.

And then there are the many expensive, unnecessary drugs. Before each infusion I get zonked with enough meds to kill a small donkey. In fact it’s the steroid and Benadryl delivered by IV that make me most miserable through the week. These drugs are supposedly given to fend off an allergic reaction to the chemo. But when no reaction happens, Dr. Lewis keeps me at the same levels. Angry and suffering, I pushed him to lower both doses and allow me to take them orally. He finally acquiesced, and the crazies have tempered. Next round, I’ll be pushing hard to go down all the way. Far fewer bucks in their pocket, but, thankfully, far less suffering for me.

Another suspicious money maker is the plethora of anti-nausea meds they’re plying me with. One, aprepitant, is doing the job, probably too well, at almost $3000 a pop. When I talked to Dr. Lewis about having so little nausea – “Hey, can we go down?”- rather than decreasing the aprepitant, he pushed me to take preventative anti-nauseas through the week. Again, he’s medicating a symptom that’s not plaguing me. Oddly when I told him that I wasn’t taking the additional Rx’s, he refused to remove them from my records. Think about it. Data gleaned from my chart will help sell drugs that I’m not taking, but are deemed successful.

On the integrative front, it’s just not happening with my infusion center, one known for this progressive care approach. Dr. Lewis is kind and smart, but to my disappointment, he basically dismissed my plan to exercise, work, eat a cancer fighting diet, meditate, get sleep, etc. to enhance chemo efficacy. He applauded my motivation, but has never followed up. When I asked about his experience using acupuncture for cancer patients, he mentioned knowing a doctor in med school once who had tried it. Frankly, I was stunned at his ignorance.

At the infusion center, it’s more of the same. I find it nonsensical that the nurses want fitness tips from me, the patient – and, in fact, I’m helping several of them with their exercise and diet. Then when I was offered a snack, an assortment of chips and soft drinks, they almost did a double-take when I politely declined their junk food, asking for fruits and nuts instead. Still, I’m bonding with these super nice women who seem genuinely pleased that I question my doctors and have taken the leadership role of my care.

Due to my CRPS, I educated myself for six months before choosing which cancer treatments to take, with whom and where. At Dr. Taw’s strong suggestion, I’m going low and slow with the chemo. Instead of getting a big blast every three weeks which is the traditional method, I do a third of a dose weekly. This regimen affords me fewer side effects with far more efficacy. And perhaps more importantly, it greatly lowers the chance of me getting more high-impact pain in the way of neuropathy and bone pain. I feel in control or, at least, I’m getting there. I feel empowered.

I thought cancer care, because of its advanced standing as a measurable disease and mountain-high level of funding, would be light years ahead of pain treatment. But I couldn’t have been more wrong. In fact I’m more aware than ever, that out of necessity we women in pain have had to find our own outside-the-box pain remedies, and these inventive, integrative strategies lead to healing and well-being. My 37+ years of being a critically-thinking pain warrior are serving me beautifully with cancer. More to the point, they could be saving my life.

With every new diagnosis, we must avoid panic, follow our guts, get educated, ask questions, choose our health care practitioners with utmost care and trust – and, most importantly, take responsibility for our own wellness.

Spoiler Alert: By finding chemo my way, a “miracle” has happened. I’ll share the good news in my next post…

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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Maureen M.

Cynthia, Think you for your update. I’ve been praying for you. I can’t imagine all that you are going through but I do know that even in your weakest of times…you still remain an incredibly BRAVE WARRIOR! I am so sorry that you have been dealt these cards along with all else that you deal with. Hang in there and try to keep focus on the love all around you. Maureen M.

Rochelle

I am so happy to hear you are in control of your care. I have been thinking about you my friend and was hoping you would maintain your control of you in this ungodly process. You have been in my thoughts and prayers.❤️🙏 As a side note the Benadryl may be helping both your nausea and pain. Benadryl has always helped my nausea plus it’s cheap. The other anti nausea meds make me so I’ll in addition to suffering psychotic breaks, not fun not knowing what’s happening to you, especially considering my worst reaction occurred where you are receiving your care. After having 35 different drugs dumped into my body over eight days, it’s a wonder the good meaning pain doc didn’t kill me. Benadryl did help with the pain, I had several RN’s tell me patients noted their pain was better. I am so glad you are standing up for you during this process, you have always been a fierce fighter the two decades I have known you. Stay the course, stay positive and pray you will come out on top of cancer as well.

And keep speaking up for you and highlighting the foibles of Western medicine and the almighty dollar!

I don’t know if they ever mention to you sometimes doing chemo or having cancer. You get anemic and so instead of taking oral iron tablets they can go through your port instead that will bypass your stomach. That would cause you nausea. That’s how they treated. my sister’s breast cancer. This is What she had to do. Good luck to you.

Thomas Wayne Kidd

Wonderful to hear you’re surviving. God bless you.

Marilyn A Mack

Have you tried Valerian root to help quiet your mind to be able to relax and get some sleep? I have fibromyalgia with all the comorbidity issues and this helps me. Good luck with your treatment and may you be well soon!

David W Cole

Cynthia, Thank you for writing this article. I’ve followed your work ever since I became a pain patient. I’ve seen first-hand threw womens testimonies The obstacles they have to jump threw when navigating the medical system in the United States. Now you’re going to the worst time of your life and you’re still reaching out to help people. You truly are a beautiful soul That deserves the best this world has to offer.
Lord in heaven, Hallowed be thy name, Please help Cynthia & her doctors eradicate this horrible disease that has taking over her life. Please wrap your Mighty hands around her and give her the strength to carry on.
In Jesus’s name Amen🙏🙏🙏

Martha

Hi Cynthia – great to hear from you again!
Hair or no hair, you are beautiful inside & out….remember that! Thank you for telling the truth about chemo & procedures. It sickens me that Drs. are STILL so dismissive to educated patients. They seemingly prefer uneducated patients who ask no questions & think they are Gods & just say “yes, Dr.” What physicians fail to appreciate is that while they are cramming in 30 patients per day…we are at home researching via smartphones, laptops or iPads. We do this for 2 reasons, 1) many of us are too ill to move from couch or bed and 2) we have a stake in what is going on with our condition. Therefore, we are often far more educated on our particular disease, than they will ever be. Yet the dismissals & disinterest continues, despite the latest research from NIH, CDC, JAMA, The Lancet, etc. that they do not have time to read. I get it, they are maxed out – but is it too much to hope for a curious, open mind??
I am glad you chose to fight cancer Cynthia, and I am grateful for your help to help us empower ourselves.

Finally, a big hug to all of the Pain Warriors here, at National Pain Report. We are Mighty, and collectively…we are strong & will be heard.
Martha

Jennifer Anderson

Oh the steroids drive me bonkers!!! And the increased pain definitely is no fun either.

Claudia Webber

Elegant writing…cannot wait for conclusion! Maybe you should c onsider a book? Remember l said that 20 yrs. From now

Becky

Prayer sent up for you. Been there with breast cancer, ad the aggressive ‘sandwich’ method. Chemo (with a port) for 3 months, radiation for 6 weeks daily, then chemo again for 3 months. Lost my hair twice and that itself is fairly well painful. The silver lining was the chemo put me right into menopause at 41, not so much the menopause, but being bald, I could deal with the hot flashes much better. Just take the hat off when the hot flash was passing, put back on after! Smile… At that time, no pain meds for the pain caused by Taxol. Very rough. For the nausea on the first set of chemo, Adriamycin, the nausea pills caused another type of yukky feeling. Lonely fight when one is single parent.
Did anyone share EMLA cream with you for the port? Still a survivor, plan to always be a survivor. I have to be here for my daughter who is disabled with intense pain caused by Lyme undiagnosed for years on top of EDS. The EDS would have been manageable as she always had it. Not finding the Lyme was a serious grave mistake on the part of doctors, Cleveland Clinic. CDC Positive Lyme what one never wants to hear and in my opinion much worse than fighting cancer. It goes on without end. Here I am, single parent breast cancer survivor, trying my best to take care of my daughter disabled since age 23, now 34, from Lyme complications. Probably her watching me fight to live when she was 16 may be what keeps her fighting, don’t know. I do know her pain and suffering outweighs what I went thru by a long shot and there is no end.