Steps, Stigmas, Stuffs

It’s been one week since I touched down in New York, and with the exception of an overnight hospital stay, everyone asking how I feel and the addition of my dog to my parents household, it still kind of feels just like a visit home. I’m not really in the mood to write at the moment, but I made a promise to myself that I’d post on a regular basis. So be forewarned, what follows may be dry. And I don’t mean dry as in deadpan humor… I mean dry as in juice-less.

I guess I’ll start with the logistics. The weekend after I arrived, my sister and I narrowed down the list of metastatic melanoma specialists we had collected from friends, family members and other doctors to four: two at NYU and two at Sloan Kettering.  The idea was to meet the doctors on both teams and then decide. Well, it’s not that simple.

After reviewing all of the advice that we received regarding insurance, we decided that, for now, my best chance for full coverage was to get on medicaid. Medicaid. First of all, I was skeptical. I assumed that the health insurance available to those in the lowest income bracket in the country would be far from my best option. But a few people who know about these sort of things have assured me (all with different addendums) that Medicaid will cover everything. Given that I’ve talked to fifty different people and have gotten fifty different answers, I am still skeptical.

While the affordable health care act and Obama Care are both amazing developments on the US healthcare landscape… it’s all so new that nobody knows what the fuck to make of most of it. Nobody really knows the rules, at least not as they pertain to my unique situation. An expat who quit a job to come home to get medical treatment, who has a little chunk of change in the bank, another little chunk of change from pension on the way, and a larger chunk of change in a paypal account that was accrued by the charitable contributions of people who don’t want me to die. And that’s the thing. It is life or death. Like, literally. I’m not quite sure if I’m breaking any rules. But if I am, isn’t now the time to do so?

The other thing about Medicaid is the stigma. There was never a time in my life when I was without insurance. When I was a child, it was never an issue – or at least not that I can remember. When I needed medical care, I got it.  As an adult, I always had jobs with benefits.  As a young woman, I worked in the social services sector and I understood Medicaid as something that belonged in the same sentence as food stamps and welfare checks. And so, right now, I kind of feel like an impostor. Here I am, in my parents beautiful home with a fridge full of Trader Joe’s, access to any movie ever on a massive HD screen at the press of a button, borrowing my mom’s Lexus to get around in… Even though this isn’t my home and these aren’t my things, it feels like there’s a disconnect between what I’ve claimed not to have in order to get coverage and my actual life experience.  Now, when I told my Canadian friends that Medicaid was the plan, they were like, ‘yeah, so… you had to quit your job to, like, kick cancer’s ass, and you are a US citizen, so of course the government should support your medical care.’ Yeah, man. ok. I’ll take it.

So this is how my Medicaid enrollment process went. The wife of a cousin is a doctor, and she advised me through the process. I was a little apprehensive going in, as it seemed a tiny bit shady. Basically, you cannot be turned away from the emergency room even without insurance. I was told that if I got myself admitted, the social workers and financial department would interview me, expedite the paperwork and Medicaid would retroactively cover the ER visit in its entirety.  And that’s, pretty much, exactly what happened. Except that, upon discharge from the hospital, it didn’t feel shady anymore. Like, not at all. Every single person I talked to in the hospital affirmed that my need is legit. I’ve got stage four cancer and I have no income. I know, I know, this blog post is laced with a whole lot of fucking justifications and rationalizations. They’re for me, not for you ; )

Anyway, despite the fact that it took from 10am to 3am to actually get me in a room (I spent 10 hours on a gurney in in a hallway crowded with other gurneys containing people who were puking, crying, shouting, shitting themselves…), when my sister texted to ask how I was doing, my instinct wasn’t to complain. In fact, I was so overjoyed to be able to communicate with people about what I was going through… to shoot the shit with my nurse about Orange is The New Black and to  joke around with the cute dude who transported me to and from my scans and to have people look me in the eye upon learning my diagnosis and say, ‘I’m SO sorry you’re going through this…’ By the time I was discharged the following day (with Medicaid Coverage, effective immediately!!), I would have been totally ok had I been told I needed to stay another day.

So, back to the specialists, and why sussing out all the docs before I decide is not really an option.  In addition to the straight Medicaid, I was advised (required, opted… of this I’m not quite sure) to get a supplementary insurance, called (I think) a cutout. While most doctors do take Medicaid, they each take different supplements. The doctors I want to see at NYU take United Health Care, while the doctors at Sloan Kettering take Emblem or Americhoice. So basically, while I was being signed up, I had to decide which cutout to go with, which meant that I was arbitrarily choosing my doctor… kind of like closing my eyes and pointing.  But not like that at all because every single one of them are excellent doctors who specialize in the disease that I have. Also, if I don’t feel comfortable with this doc or with her plan for treatment, I have 90 days to switch cutouts, so I can shift over to Sloan if need be.

So here are the facts and figures, for those of you who are just getting caught up, with a few new details. Let’s go with a list, shall we?

1. diagnosis: metastatic melanoma. started in my knee four years ago. appeared in local lymph node (stage III) last year. now have a small malignant tumor on my chest, just under the skin and what appears to be a metastasis on my lower left lung, which is large-ish (2.5cm). distant metastasis=stage IV.

1A: i tested positive for the BRAF V600 E gene mutation. this (i think) is a good thing, because melanoma is like the ninja of cancers (which is why it kills so many more people than any other kind of cancer). identifying this particular mutation has something to do with the cancer cells’ ability, or rather inability, to hide so stealthily. i’ve read a lot of information online about this mutation, mostly in abstracts, and this is the understanding i’ve gained… it might be totally inaccurate.

2. insurance status: will be covered by Medicaid for a year starting now. unfortunately the supplement I chose won’t kick in until Feb 1st, so I may be paying for some of my treatments out of pocket for the next month,

3. next step: seeing a doc named Melissa Wilson at NYU on monday. she was recommended by a friend of my aunts, who also had melanoma (stage III) , and who has been cancer free for over three years. i had a good long chat with this previous patient, who described the doc as incredibly warm. this is so important to me. again, it’s not some rando doctor. she comes from a list of highly recommended specialists. if she will make me feel like she’s truly invested in my survival, that i’m not just a patient number, i know it will help me to stay hopeful.

4. treatment: still no fucking clue what’s to come.

5. prognosis: if you look at the stats online, they’re grim. like, less than 20% chance i’ll survive five years. but. BUT.  BUUUUUUUT. Those stats are based on data that was collected before. Probably up until 2013. This year saw some of the most significant progress that’s ever been made. Like leaps and bounds. People are talking cure. Soon. So, yeah, there’s that… And, just in case I haven’t told you, I refuse to die. Too much shit left to do. And I still haven’t swam with a whale shark.

Man, I sat down (reluctantly) to write this, totally expecting to bang out a paragraph about the medical-slash-financial crap and then write a whole bunch about what it’s like to move in with my parents at 40. I guess I’ll have to write again tomorrow.