And I am sad. I need to get this off my chest.
When I went through cancer treatment, the cancer medical community was on top of it with cutting edge chemotherapy drugs, state-of-the-art surgical techniques and the latest findings in dosimetry. But, sadly, that’s where it stops in Western medicine.
Before I get into this, let me say that I am so freaking happy to be here that I find words inadequate. However . . .
What has me in such a lather today is my yoga therapy work that I just started. I love it. I found a real gem in my therapist, and I’m happy beyond measure to have stumbled upon this yoga studio and therefore, Sybil. This kind of therapy is far beyond the reaches of the physical therapy I received in Colorado. While Layna was masterful at completely eliminating any effects of my lymph node removal and kept my upper left quadrant movable and flexible throughout radiation, the insurance company severely limited her scope of treatment.
What happens is that the insurance company requires a diagnosis. When the doctor says that I need therapy on my left shoulder after a breast cancer diagnosis, then that is what Layna is allowed to treat. And only that. She’d sometimes spend about five minutes on my right side but it was not equal. I don’t fault her. It’s the way it’s all set up.
She’d give me exercises to do at home. And I took part in the yoga classes that the clinic offered to recovering patients. But it’s not the same.
Why is Sybil different? Because she can work with my entire body. She can look at the way I walk and stand, how I move not only my shoulders and chest but also my pelvis and hips. She has given me exercises that have had a greater impact on my mobility in three short days than anything I was doing in the past 18 months combined.
SO WHY DOESN’T EVERY WOMAN WHO’S GONE THROUGH BREAST CANCER KNOW ABOUT THIS???
And that’s why I’m sad and mad.
Why doesn’t the cancer medical community treat the whole patient?
I remember at the very beginning of treatment getting a call from the American Cancer Society. The woman asked me if I had any concerns, needed resources, financial help, etc. This conversation happened in December of 2014 — before I’d had even one dose of chemotherapy. At the time, I felt fine. Like perfectly fine. So questions like this were not only fruitless they didn’t make sense to me.
I had no idea what I was in for. No one does. How can you possibly know? Everyone is different. Everyone has their own experience. And you can’t possibly guess what you need before you know. I needed this call months later from someone equipped to provide wholistic care. (I chose this spelling carefully, BTW).
Even beyond that, why doesn’t the cancer medical community treat the whole family?
I’m not the only one who suffered during that process. My kids were scared. My husband was run ragged by all of my needs. And my sister took more vacation time than she probably had to be able to come to Denver and help.
The thing is, their scars are acknowledged by the cancer medical community. I heard it all the time, “Cancer is hard on everyone,” they’d say. But that was it. End of discussion. No offer of help or ideas of where to find it.
It’s truly mind boggling that I sought ALL of my complementary treatment on my own and paid for it on my own. While I was going through it all, I was happy to have allies on my side. My whole team was amazing. But the piece that’s missing is that in the cancer medical community, once treatment ceases, care of the patient ceases — and that is wrong.
Our medical system is deficient in so many ways it’s maddening. And it’s now that I’m past the treatment that I have the luxury of fuming. No one should have to suffer during cancer treatment and recovery. Options are available, but the patient has to be aware and able to afford them out of pocket.
In 2015, I spent $17,000 on out of pocket expenses. And that is a lot of money. But if you take, for example, the cost of one chemo treatment it’s a drop in the bucket. One of my treatments cost $60,000. I had six of those. And then 12 more of a single medication. Chemo lasted for a year for me. I had three surgeries. I had a hospital room that cost my insurance company $107,000 for one night. (Not shitting you, I have the bill.) I had biopsies, PET scans, MRIs and mammograms. I had blood work and echocardiograms. I had six weeks of daily radiation. I had weekly physical therapy. And this was all covered by my insurance. My insurance company spent well over a million dollars on my treatment in 2015. So my question is, what’s another $17,000 that would DRAMATICALLY improve a patient’s quality of life?
Don’t fool yourself, it all comes down to the dollars and cents.
They can’t charge $60,000 for yoga therapy. It’s not a profitable business model.
I don’t mean to be cynical but it’s just true. In the cancer medical community, the focus is on treating the disease. Once that is done, further recovery is out of their hands. They may support it, but they don’t provide it or even information on how to get it — or what IT is.
My oncologist used to ask me what I’m doing to stay well and recover. I’d tell him, and he’d say things like, “Well that certainly can’t hurt.” And he was on to the next question.
Throughout the treatment process, I’ve been engaged. I am an educated person who can understand complex things. Not only that, I want to. Apparently, this combination is rare from what I can tell from my doctors’ reactions.
When I recently went to a gynecologist here in Charlotte, she started the visit by asking me questions about my type, grade, stage, genomic risk factors and so on. She was asking them half aloud, half to herself as she’d scan the computer screen for the answer. Once she realized that I had the answers in my head, she stopped scrolling the mouse and turned to look at me.
She said, “Do you have a background in medicine?” I said “No, but I am very engaged in my care and treatment.” After that, the visit was more of a conversation.
I don’t know the answers here, but it seems like more patients need to take the initiative and demand better care. And more doctors need to treat the patients like an ally and not just their job.
If I can offer a some pieces of advice to anyone who is going through treatment they are these:
Take probiotics. Do it now. Twice daily. And do it at least until you finish chemo. Culturelle is great, and you can find it almost everywhere.
Move while you’re in bed. Leg lifts, bicycles, whatever feels good.
Get a wig. It feels better to look like yourself.
Stop eating sugar in all forms, except fresh fruit if you can tolerate fresh fruit.
Walk when you feel good.
Eat when you feel good.
Sit outside in the sun when you feel good.
Get over the disappointment about people in your life who disappear upon hearing the word “cancer.” Focus on the unexpected blessings you get from everyone else.
Lastly, find the joy. Some days it may be hard. But it’s there. You’ll see it, even if you have to squint.