The High Cost of Survival

          It was a few weeks ago now. I was standing in the bathroom, sleepily straightening my hair with a hot iron before making breakfast. Since the chemo I've kept my hair short, something I never would have predicted. Now I wear it straight. Prior to going bald, though, I would have said my long curly hair was an integral part of my identity. Same with my breasts: linked critically to my view of myself in the world.

Four years post-cancer, I have short hair and one breast. I've learned to adapt to this new me.  

But on this particular morning I was thinking of making further changes. “I want to talk about removing my right breast.” I watched myself in the bathroom mirror. First I mouthed the words, and then I tried it aloud, but it came out in only a hoarse whisper. It felt heavy  on my tongue. Heavy, but also... necessary. Saying it made me feel better. 

A couple hours later the practicing paid off. There I was, saying this loaded statement out loud again, only this time it was full volume to another person. As soon as it was out I grew scared. Maybe I hadn't given the topic as much forethought as I should have. For a minute -- a day? a week? all freaking eternity? -- the sentence hung in the chilly room, suspended, and my heart galloped around in my chest. I shifted in my seat and the thin paper liner on the exam table beneath me stuck and released noisily from my thighs. Looking down I saw my legs swinging. I stilled them and then, finally, looked up. 

My oncologist met my gaze with a stern-yet-puzzled intensity. 

“Why?” he asked. 

It was a perfectly relevant question. I’m designated No Evidence of Disease, been dancing with good ‘ole NED since Aug 2012. I’d arrived at this appointment with no suspicious aches or pains nor mysterious lumps or coughs. For all intents and purposes, I was doing perfectly. So why?

A little back story: I think the world of my oncologist. He saved my life, he’s my super hero. At a time when I was devastated by an out-of-the-blue cancer diagnosis and had literally no idea what way to turn, he was the one who said, “Here’s what we need to do, and these are the steps in which we are going to do them.” He was the man with the plan. My job was simply to show up and present my mediport. My tumor shrunk in response to his chemo regiment and after many, many weeks we decided together on a modified radical mastectomy: remove the breast with the cancer, keep the one without. It was a solid plan. I wanted to keep the right breast because I planned to put cancer way, way behind me and resume my life: grow my hair long and curly again, and one day breastfeed a newborn. 

Now I think perhaps that ship has sailed (the long locks and that version of the baby dream)… but that’s not why I now want to remove the breast.

“Why?” Dr. Superman asks again, gently. 

“The mammograms and MRIs,” I say. “I’m tired of having them!”

I sound ridiculous even to myself.

It’s true my every-six-month scans are no walk in the park, but the minute I say it, it feels wrong. I know this isn’t the real reason. I can handle the scans. I don’t really mind the dark, narrow tunnel and the loud knocks and buzzes of the MRI anymore. Nor do I mind the cold plates of the mammogram machine, the tight squeeze, or the nurse who inevitably asks why we are only doing imaging on one breast. I dutifully don the paper gown, fold my clothes neatly on the chair, remove my deodorant with a wipe, and leave my piercings in my purse. I swallow the post-traumatic stress and the fear of recurrence that pricks around the edges of my stomach, sending bile into my throat. I smile sweetly at the staff. I am a good patient.

So then why am I here now all but demanding major surgery to amputate a healthy part of my body?

“It’s the money," I say. "I’m struggling to afford the on-going scans."

When I was diagnosed with cancer I was working as a contract employee, self-insuring myself and my small family. My insurance wasn’t great, but it was insurance nonetheless. When the diagnosis came I thanked my lucky stars I’d never let it lapse. At the time my deductible was $4500. I remember how horrified the medical staff were of this figure, the ones who had to discuss the costs of chemo and biopsies and surgery with me; the ones who required I bring a cash deposit of $500 to my first biopsy. I was young: I’d always had a high deductible and all it had meant to me were lower monthly premiums. I had no context. 

And then I was diagnosed with cancer. I was terrified. I wanted to do everything I could to survive. I didn’t want to make decisions based on money if I could avoid it. 

I met the deductible at lightning speed (the week of my diagnosis I had a bone scan, an MRI, a mammogram, a PET scan, blood work, etc.), and then I met the prescription deductible right away (also $4500). That year I paid $10,000 out of pocket and considered myself lucky. My deductibles may have been high but I was thankful for the cap – I saw all the summaries of my medical costs, all the many commas and zeros. 

But what I didn’t think about at the time – and how could I? – was the high cost of surviving cancer: all the costs that come with the post-cancer life. Being diagnosed in my thirties, I hope there is a long, long life ahead living the post-cancer life. So now there are the annual doctor visits, scans, and blood work, the cost of treatment side-effects like lymphedema-prevention machines, garments, and occupational therapy, dental bills, and more (I’m sure there is more coming that I don’t even know about yet). None of this was talked about when I began this journey, and to be fair, I don’t know that it should have been. My job then was to survive, and trust the people I put in charge of my care. I was lucky that I didn’t need it to be about the costs. But that was then. This is now: bi-annual scans that cost me thousands out of pocket. As soon as I finish paying off one, it’s time for the next, and I no longer meet the high deductible now that I’m out of active treatment. Maybe I need better insurance? Maybe, but I’m tired of researching my Covered California options and even with the high deductible, the monthly premium is high, too. But my plan is taken by all my doctors and that’s a big priority for me.

I explain all of this to Dr. Superman. He sits back on his wheely-stool, leaning his back against the row of cupboards. He crosses his legs. Outside the exam room I hear the hustle and bustle of other patients, doctors, and nursing staff. I know he really needs to get on to the next patient, likely one who isn’t NED like me.

“I had no idea it was so expensive,” he says finally. “I just order the tests, I have never wondered what the burden might be financially to my patients. That’s too expensive, I agree. But amputating a healthy part of your body is an extreme response. Let’s see if we can find an alternative to the MRIs.”

I suddenly realize I’ve been holding my breath. At this I exhale and my eyes fill with tears. I realize I don’t really want to cut off my breast. Not now, at least. Maybe one day I will want to for medical reasons, but today is not the right time. I don’t want to cut it off because of the cost of keeping it.     

Dr. Superman to the rescue again. The man with the plan. I agreed to keep doing the annual mammogram. In lieu of the costly MRI he suggests another round of genetic testing (there have been advances since I had my initial testing four years ago), regular gynecological exams, and blood work. I know I need to do my part on the nutrition and exercise side. 

I leave feeling relieved. Of course all these suggestions will cost money, but my hope is that my post-cancer life is a good long run and it feels good knowing there might be alternatives in this “new normal.” I’m very happy to have survived cancer, now I’d prefer not have something that happened in my 30s bankrupt my new lease on life. 

April Johnson Stearns is the editor and founder of Wildfire Community, LLC, an online magazine for young breast cancer survivors. She was diagnosed with HER2+ breast cancer at 35 years old. She lives in Santa Cruz, CA with her family.