Cost of Living

Yesterday, I learned something that has shaken me to my core. I learned how much it is costing to keep me alive.

For most of my adult life I have taken on and shed jobs. I did this so I could concentrate on writing, usually taking a job for a few years and saving money to take a year off. I have always worked, but often just part time. Even on sabbatical in a subsidized living situation, I took on book editing projects. Working is an important part of my identity, something I learned when I couldn’t bring myself to apply for disability, because it would mean giving up my occasional freelance projects. Work is important to me. Making money is not.

I’ve lived simply and do not indulge. I like it that way. Self-sufficiency is my goal, and though I’ve got a modest amount in savings and retirement accounts, I do not ever think about my “number.” I am appalled by the financial services commercials that show retired people of great wealth and privilege living lives of great wealth and privilege — freedom. The “freedom” gained by money has never interested me.

To tell you the truth, I was somewhat relieved when I received my Stage 4 cancer diagnosis nearly five years ago. I would not have to worry about “running out of money” or the indignity of a state nursing home at the end of my life. I knew what my death would be, and there is some odd comfort in that. Of course, at 51, I was nowhere near ready to die. I have done everything I can to prolong my life. So far that has meant three 6-month rounds of chemotherapy (with a 2-year remission after the first round), surgery, and now taking a daily maintenance therapy, a PARP inhibitor called Zejula. I’ve been on it for six months with wonderful results. My quality of life is very good. The cancer is small, contained, and stable. We do not know how long the Zejula will continue to keep the cancer at bay, but Susan Gubar, who has had stage 4 ovarian cancer since 2008 and is 20 years older than me, has been on a PARP inhibitor successfully for eight years.

I knew it was expensive. However, having reached my maximum out-of-pocket expense on my Obamacare (MNsure) health insurance following chemotherapy from January to June, 2020, I didn’t have to think about the expense. I just ignored it, and sighed with gratitude every month when I reordered the refill and the woman from the specialty pharmacy said, “No copay, so we can deliver that for tomorrow.”

Yesterday, I went into the inner workings of my health insurance website for a different reason. As we all know, the costs of healthcare are often not disclosed by providers, and in my case I don’t even get physical statements of claims. It happens magically behind the scenes. I track my own expenses and payments to make sure I am not required more than my maximum, and then I let things run.

Just before Thanksgiving, I fell and broke my ankle in three places. Fibia, tibia, and displaced ankle bone. It required surgery to implant a plate and six screws. I wanted to know how much the surgery and orthopedic care had cost. It was, of course, more than I’d thought, with anaesthesia and radiology and multiple doctor’s visits, as well as the cost of the surgery (I remember being told at the surgical center that a pair of crutches were “part of the package,” like a free clock when you open a bank account. I’ve also been fitted with two splint casts and a high-tech boot, as a matter of course. Like so much medical care, it confidently goes along, and no one asks anything about cost or whether some of these doctor appointments are necessary or can be combined to minimize cost. I think of that, but don’t pursue it, mostly because I don’t have to.)

After seeing these claims, I scrolled down to the claims for Zejula. I had thought the cost was high, maybe $6,000/month. I don’t know where I got that figure, but I think I heard it at a conference for ovarian cancer I attended at the Mayo Clinic a couple years ago. In fact, I remember sitting in the conference room with a doctor telling us about the exciting new therapy, PARP inhibitors, coming down the line, and someone texted or tweeted the cost of the treatment to others in the room, and people started to gasp as the number went around.

It was expensive enough, I knew, that I did something disgusting a few weeks ago. Nauseous after surgery and a reaction to the pain medications, one night I vomited up my nightly pills immediately after taking them. They were there in the sick, fully intact capsules. Thinking those pills cost maybe $200/each, I scooped them up and swallowed them again, this time able to keep them down. It was kinda horrifying.

Not as horrifying, however, as seeing that the medication I am taking, the Zejula I casually order each month, that my FedEx guy drives around with in his truck and casually hands to me in a simple padded envelope, costs $43,000 a month. I was shocked to see that number, and then see it again the month before, and the month before that.

I never wanted to be one of these people. I am youngish, and no one begrudges me the treatment, not even the insurance company. Nobody says, “Enough. That’s all you get. You’re done.” No one says that other thing that terminally or chronically ill people fear hearing the most: you’re a burden.

Yes, when I called today, the pharmacy said I would indeed need to pay up front, by credit card or debit card, the copay of $7,000 when I order in January. I am exceedingly lucky that I have the money. Though I was planning, as in past years, to pay out that amount over the course of months, as oncology bills for scans and treatment make their way through the system, now I will pay up front. And I will pay a small amount in February. And then I will not be asked for any more money for treatment for the rest of the year.

But I am, myself, burdened. Because on some level I don’t support treatment on this level. I don’t support treatment that overburdens and threatens to collapse the system of healthcare. I almost can’t bear that my life is being subsidized to the tune of about $600,000 a year.

I remember, of course Obama and Joe Biden’s “moonshot” to cure cancer. I watch the programs touting immunotherapy and new treatments, like the one I am currently on. It would not have been available to me even four years ago, and if it were not available we would have run out of treatment options this summer. I would have gone into a pattern of almost constant chemotherapy, with shorter and shorter breaks between the debilitating treatments. I would not have had my six months of kayaking and gardening and writing, or the six months or more ahead of me. Before I broke my ankle, I had been looking forward to my first cross-country skiing season in three years.

I also know that eventually, in years, the cost of development of this drug will be met, and it will eventually become, if not a generic, less expensive. Maybe $6,000 a month. And the hope is that there will be something else behind that, maybe even effective immunotherapy, the closest we can get to a cure. And that will be expensive. And that will be success.

I cannot hate the pharmaceutical companies that make the life-prolonging drugs, including investing large sums in research and development, in years of trials. I cannot be upset with the health insurance company that (thank God for Obamacare) does not kick me off the plan because I cost them too much, even as my yearly cost of $20,000 would be beyond the reach of many people. I bristle at talk of “high cost pools” of people separated out from national healthcare plans, the duplicitous talk of honoring pre-existing conditions while planning for those with pre-existing conditions to be left to fend for themselves. And yet. And yet.

I carry with me the cost of my life, which after decades of keeping low, has suddenly soared. As Mary Oliver said, my “one wild and precious life.” No one is demanding anything of me for this cost other than living my life, however I am able. I also do not feel any obligation to “make good” on the money being spent on me.

It all happens in a world beyond my comprehension, in computers and office towers, in government centers. I know that is all precarious, but I will carry on as best I can. I will comfort myself in the cool competence of the woman who wrapped my swollen ankle, who fitted me for my boot. I will go in tomorrow for my 3-month scan and be welcomed into the clean, cool room with the humming machine, where they will access the port installed in my body, send dye through it, give calm instructions, and take the images that grant me another three months of life.