Playing the Odds: A couple hundred bucks a month for an 8-9% survival chance increase

“I’m old, so I have to get up and move my legs.” Returning to my seat on the Vancouver-bound airplane, the man sitting next to me, a man who wouldn’t need a fake beard to convince a small child he was Santa, explained. He’d gotten up also.

His admission makes me remember each time I’ve been warned. Hormone therapy has all kinds of side effects, blood clots being on the long list each medical professional- the oncologist, the pharmacist, the nurse who calls himself “The Man on The Breast Team” and giggles each time he says it, like he doesn’t say it every time. The OR nurse who helped me put on the surgical stockings advised me to keep the impossibly tight thigh highs, “For airplanes. Because you’re at high risk. And these are expensive.”

Medically induced aging, that’s what I’ve got. Not the kind of aging you can see right out- not the kind that causes Santa-hair or the kind that causes confusion about how to use social media or personal technologies.

Just the kind that is simultaneously fussed over and ignored.

The kind that involves staring at death. The kind that involves making decisions about shutting down ovaries, for fear of what they produce. The kind that involves wandering through cancerland.

Just the kind that is simultaneously fussed over and ignored.

There’s a new hormone therapy. I’m switching to it. There’s not one right way. No one knows what the right way is, if there is one. But a study came out recently, called the SOFT Trial. The results were published, and the cancer agency made some decisions, about whether they will fund this new, recommended treatment.

They will not.

That’s because there’s not very many patients for whom it would make a difference. Put another way, the fact that it matters a whole lot for a few bodies, and that it doesn’t matter for the majority of bodies isn’t cost effective. The policy seems to scream to me, your body doesn’t matter enough.

Because for me, it will matter. For me, the treatment recommended by the SOFT trial suggests a 8-9% five year survival increase.

That means that if we were one hundred pre-menopausal patients, and if all one hundred of us had grade 3 cancers in our breasts, and if all one hundred of us were under thirty-five, eight or nine less of us would die. EIGHT OR NINE WHO WOULD HAVE DIED, WOULD LIVE. EIGHT, OR NINE. We don’t know which eight or nine. Some will still die. But eight or nine who would have died, would live old enough to go into menopause naturally. Eight or nine who would have died, would live long enough to grow wrinkles in their foreheads and babies in their bellies and careers on the horizon.

The problem is, the standard of care is not built for me. It’s built for a middle aged woman, with a low or medium grade cancer, who has already gone through menopause. And so when the cancer agency decides what kind of treatments to make standard, they don’t factor us in, even if we are one hundred and eight or nine of us would have lived with the new treatment.

And so I will pay. Because there are not enough of me. Because there are not enough of me to make this treatment financially responsible. What does it mean to be body, a body the state decides not to care for, because it isn’t financially responsible?

Certainly, it means my bank account will sink lower still, as I try to make ends meet on an adjunct professor’s meager wages (that is a whole different blog post). It means I will commiserate with my cancer buddies, about whether the cost is worth it to our lives. It means some of us will not be able to afford to switch to a therapy that means our chances at being alive five years out from our diagnoses jumps from from 65% to 75%. Can you believe it?

It feels like the world is eating its young. It feels odd that folks aren’t out protesting. It feels like our bodies don’t matter. They certainly didn’t find their way into mattering enough as the policy was voted on, the decision made. We weren’t even there to raise our hands. They forgot to tell us when the meeting us. And we got eaten, swallowed whole, written right out of medical policy, our best interests cast aside for financial responsibility, because the older masses matter more. Because someone else knew different, and someone else counted, but they didn’t count our heartache, they didn’t measure our dreams, they didn’t account for our desire to live.

So don’t tell me your so and so had cancer and everything was covered. It’s not true in the US and it’s not true in Canada. No, not even in Canada. And besides, stop being that person who loves to position themselves as close to the cancer, as in the know. You’re not in the know, you’re out of it and your “stories” are not helpful. In Canada, I’ve paid for shots to stop the nausea and treatments to preserve fertility and pain medication post-surgery. Yes, I’m plenty aware I’ve been fed cancer treatment on a silver spoon compared to what I’d have gotten living in the country of my citizenship- which, as a graduate student would have likely included (and as an adjunct professor would certainly have included) piecing together chemotherapy in non-profit clinics, addicted to the drug the nurses call the red devil and unsure about how I’d get the next fix my oncologist insisted on. That’s a real thing that happens. But I’m also absolutely convinced, and if you disagree tell someone else because I have zero interest in arguing and I’m not going to entertain your logic unless you agree with me because anything else feels viscerally violent, that everyone walking this planet deserves completely free access to the best medical treatment around.

And you know what else everyone deserves? To be free of disease born of the environmental disaster that we have created, to be free of hormones that stave off what should be a normal substance in the body, to be free of needing, of requiring medically induced aging that can’t be seen, the kind of aging that rubs most deeply on the soul and makes the future blurry.

So let me just go pay for my eight or nine percent five-year survival rate increase. And if that’s too real for you, I agree, it’s effing morbid. So is wondering if the kink in your calf is a blood clot from your hormone therapy. So is wondering if you should explain to Santa’s body double why you need to get up and roam the airplane as much- maybe more?- than he does, even though he’s decades older. So is deciding an eight or nine percent survival increase for cancer patients who’ve barely had their ten year high school reunions isn’t financially responsible. So what are you gonna do about it?

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Email Anytime Relief

Email ANYTIME, she wrote. Her caps, not mine. Cue, giant sigh of relief.

In the past few weeks, cancer has had its way with me. My body has been angry, flaring up in hives and sending shooting pain through my chest bone. I’ve seen doctors and had tests and gotten results. It’s creepy-crawly. It’s not a place I like to be, this space of not knowing, of wondering if I’m gonna be OK, of weird and random and unexplained side effects.

And my oncologist is on sabbatical. So emailed her. Come in tomorrow, she emailed back, and in a nano-second, the cancer agency was calling to set up an appointment for me. I saw another oncologist. He opened the door without knocking, and he opened my gown without asking. My eyebrows raised. He was wearing batman earrings, but he was no super hero. He did not look old enough to have the years of knowledge Dr. G. carries with her, the knowledge that shapes her decisions, the knowledge that allows her to answer questions firmly and carefully and completely so that I feel taken care of and visible. One look at my reddened skin, mottled with tiny dots, and he assured me it had nothing to do with cancer. Bullshit. Also, since these hives are terrifying me at least acknowledge that they look scary, that they look angry, that they look abnormal. Acknowledge that I’m right to be terrified. Those hives covered only the fake tit, only the skin covering the implant, only the breast that was invaded by cells dividing without control. Those hives had everything to do with my cancer.

Way to build trust, Dr. Batman Earrings. I was skeptical from the moment you walked in the room, and you gave me very few reasons to trust you. You don’t get to fling open doors and blue hospital gowns like you own the cancer agency or worse, like you know my body better than me. Dr. Batman Earrings has got to work on establishing presence, holding space, moving the air so that there’s room for me to know that he is going to make sure this works, that he is going to make sure I’m cured, that he is going to make sure it’s OK.

You don’t know me. You glanced at a bunch of stats, you calculated risk, you flipped through a chart filled with words of warning and prescriptions for curing my cancer. You don’t know me. You were surprised at me. Surprised I didn’t act like I liked you from the second you walked in the door. But you gave me no reason to. I’m skeptical of your nose ring and your earrings and your hoodie. I’m wary of your male privilege. I’m not about to trust you just because you are a doctor. I’m a doctor too, you know. You don’t really know me.

If you really knew me, if you took even a second to really know me, you would know I spent hours debating whether I should call you about these stupid hives, and hours reading about what can cause hives or rash, and about inflammatory breast cancer. You would know I just finished my Ph.D. and that this cancer has been a harrowing experience. You would know the chemo dulled the vibrant orange-y strawberry that was my hair, and that I have a lot of different appointment buddies. You would know that fertility has been a major concern and that I feel so out of place amid the older women.

But you don’t know me. You only saw my chart. That’s not me. My body can’t be captured in those numbers, those graphs, those recommendations. That’s not me.

As the scans and tests mounted, I finally decided to email Dr. G.. Multiple paragraphs, each one dedicated to one of the strange occurrences. A lot of questions, about the hormone therapy Dr. Batman Earrings wanted me to switch to immediately.  About the sternum pain and the X-ray, the risk of radiation from X-ray and the power of the tests to come. I tried not to sound too neurotic, I hoped the lines were not too laden with anxiety. But they were. I worried I was crossing a boundary, that I should be able to let her take her sabbatical without emails from patients, that I should be happy enough that Dr. Batman Earrings saw me the next day after Dr. G. sent an email, that I should be able to deal with whatever oncologist, because really, they’re all oncologists and what’s the difference?

But I emailed anyway. And she responded. At 2am.

And her response was such a relief. Oh thank goodness. Dr. G answered all the questions, in detail, carefully and kindly. She was reassuring and clear and consistent in her answers. There’s no room for uncertainty between cancer doctor and cancer patient, and she is not one to waffle. You can trust clear structure, you can trust certain not-waffling, you can trust her. She’s probably the only human on planet Earth who’s assessment of my being ok actually has the power to make me feel like I’m going to be ok. And she wasn’t wearing batman earrings, even though her emails came at 2am and again at 5am. She must never sleep. I don’t care. I am so relieved. Anytime, you can email me, she said. Oh relief.

I warmed up to Dr. Batman Earrings. He seems competent enough. They’re all competent though- somehow, they got through med school and an elite specialty. What I need is kind. He seems kind enough, but I still feel better about my own oncologist, the one who saw me through the chemo and who made sure I had time to do fertility treatments and who took my concerns seriously.

I sort of warmed to Dr. Batman Earrings. And if I can have Dr. G. over email, too, I can deal. I can stay warmish, if I know she’ll be back at summers’ end. I’ll be glad when Dr.G. is back, and until then, I’ll be here, rolling my eyes at Dr. Batman Earrings, and reminding him he doesn’t know me. He’s competent and kind and I can deal, but he doesn’t know me. And I won’t let him forget it. He doesn’t know me. Not really. Not yet.