Last family photo taken just days before our world went wonky.

Fade to Pink

I have a love/hate relationship with the photo at the top of the page. I mean, look how adorable the kids are: T starting to look so grown, J with his unruly hair and studious glasses, C carefully working to avoid the itchy scratchy hay. Me, wearing my grandmother’s wedding band that I’d had on since right after her death the year before. Everyone looking so young — little fam out at the pumpkin farm days before Halloween, doing all the Fall things despite no Instagram to document that it happened. We didn’t know what we didn’t know. But out there — like a train — was my doctor’s appointment (finally) on the coming Wednesday to get some answers about a suspicious lump I’d been worrying after. I was about to be diagnosed with breast cancer.

I’ll tell you, I went to that appointment, and for whatever reason the doctor was not available, and I was so frustrated I said aloud (maybe loudly) at the reception desk that I needed someone, I didn’t care who, to look at my breast. The receptionist saw all my unsaid fear, and told me she could get me a few minutes double-booked with a surgeon who was there that day. One look, and he was all ‘I’m biopsying that on Tuesday’. Much later I found out he had recently read research about the six-o’clock presentation of breast cancer, and mine fit what he’d just read, and he was trying to stay cool about being sort of alarmed. So there you go: I was a loud voice for myself, and the right person/persons heard me and helped me and here I still am.

But I’m not writing about that, really. I’m writing about the lottery. Not the life lottery, that hands you a grim diagnosis, but the lottery of you-won-lots-of-money-and-now-what-will-you-do? — ha, I did not actually win that lottery, but I have some pretty solid plans about what happens if I do. First of all (not really, first I pay off the car) I am buying buying buying. I am buying up medical debt. John Oliver shed some light on this: medical debt is for sale. You can buy it and people who fell behind on their medical bills will owe YOU money. Health insurance companies sell it off because it’s unlikely they will collect the full amount, and they’d rather have you buy it and be guaranteed SOME money than spend their own money and resources chasing it. And guess what? You can then chase the folks and their money. I know: that seems like an ethics disaster. Plot twist, though: I’d just forgive the debt. The end.

What is the #1 cause of personal bankruptcy in the United States? Medical Debt. That’s right. One in five adult Americans have delinquent medical debt on their credit report. It’s surprisingly easy to fall delinquent, because insurance companies, on average, take 120 days to settle a bill. In that time, the bill (in YOUR name) can go to collection. And that’s the picture if you have good insurance. Let’s just say you hit the $10,000 out-of-pocket limit (with good insurance) three years in a row (go ahead, get diagnosed with cancer at the end of a calendar year, and be in treatment for another year plus: it will happen). After the dust settles, you are going to pay that down for ten years. Ten. That’s two and a half presidential terms, three World Cup Soccer tournaments, three winter Olympics, three summer Olympics, and two of the kids in that photo above learning to drive, and one of them graduating high school and starting college. It’s being frugal, and vacationing with friends, driving older cars, scaling back holidays, etc. But we did it.

We were lucky. In lots of ways, tbh. But lucky from the perspective that I qualified to be in a clinical study for a treatment drug (nod to the yew plant, and to the scientists who figured that out — God love science), and that protocol included a caseworker assigned to me, who was also a financial advocate and helped us not be overwhelmed. So much of the advice out there was to cash in our IRAs (people do) or take a second mortgage (people do). What we managed in our situation is not a template for anyone other than us. The important learning, for us, was that in the sea of bills, we did not lose our breath. For instance, I had to have a subcutaneous shot every day for a period of time, and it was a $35 co-pay — each time — to go to my doctor’s clinic for that. On the advice of my caseworker, I found a nurse-friend who could do it for me, and she taught me to give myself the shots. And if that seems extreme, well welcome to decisions you make to save a thousand dollars a month.

Cancer will kick your ass and your wallet. The associated costs are more than the daunting numbers listed on each separate bill (from the hospital, the oncologist, the lab, the radiologist, the clinic, the weekly bloodwork, the chemotherapy clinic, the surgeon, the recovery room, the research group, inpatient support, outpatient support, medical equipment, home visits, etc.). For many cancer patients, hidden costs include things like Transportation. If treatment side-effects mean you cannot drive, then getting to/from treatment becomes a challenge, particularly if you are not within service of ride-provider options. For patients living some distance from treatment, each trip may include a hotel stay and meals — no insurance covers those costs; these are just some of the invisible costs of treatment. Also, lack of transportation is the leading cause for missed appointments, and missed appointments impact outcomes. Man, I’m telling you the side effects like neuropathy or blurred vision or slowed decision-making all play into this issue in a big way. Not only can you not drive to treatment, you may not be able to drive to work. Or to even do the work required at your job. Immunities are compromised in the aftermath of treatment as white blood cells were destroyed and now replenish, so maybe you cannot be in crowds; you certainly cannot be on airplanes in most chemo protocols. Jobs are lost, and if your employer carries your insurance, that is a bleak knell.

It’s easy to see how medical debt accrues and towers and swallows people wholly from their lives and their confidence in their ability to control their controllables. As debt mounts, payments often slow, and eventually insurance companies are willing to sell off medical debt for a percentage of what is owed, in order to close the books on that particular line item. RIP Medical Debt, the organization profiled on John Oliver’s LastWeek Tonight show (where he bought $15 million of medical debt for $60,000, then forgave it), buys and forgives medical debt, using donations. Of course, most people who buy medical debt are not in the business of forgiving it; it’s open season on hounding some already vulnerable people. Which is so wrong.

The moral of the story here is that anyone can be out at the pumpkin farm one day and at home recovering from a surgery that lost them a body part just two weeks later, and looking at those little-kid-faces and not thinking twice about taking on staggering debt and horrendous poisoning treatment in order for a chance to still be here. The other moral of the story is this happens every damn day. Closing out this month of pink-everything, get smart. Someone told me recently that all this breast-cancer-awareness gives false hope. Wait a minute. If your mother or grandmother or auntie or teacher or neighbor died of a disease 40 or 50 years ago, wouldn’t you think inroads were made for a cure by now? Yeah, me, too. We need hope, and really, we need results. We are drowning in awareness when what we need to do is cure Stage IV — that’s right, cure Stage IV and you cure all breast cancer. Pay attention where you give your money (BCRF, National Breast Cancer Foundation, Metavivor all do great work funding actual research and/or helping patients in need, and Planned Parenthood provides mammogram screening which is a key to early detection, all without paying executives top dollars. Charity Navigator is your friend here, take a look.). Pink up whatever you like, but also fund research, learn about medical debt especially as related to breast cancer patients (check RIP’s website as well), and knock this disease back. Send October out in a wave of change. That is real winning and gets you more than a pink ribbon.

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