Marriage or Medicare?

Photo credit: Rose-Lynn Fisher, “Tears of Ending and Beginning,” 2013

Photo credit: Rose-Lynn Fisher, “Tears of Ending and Beginning,” 2013

Every fallen petal

diminishes spring

 

so the wind showers down a thousand

just to make me sad

 

I’ll keep my eyes

on the ones that remain

            – Tu Fu, from “Meandering River,” translation by David Young

 

How do you rob a pharmacy?

I understand the basic elements. A ski mask. A weapon, maybe. A certain measure of desperation. But once you bust in, once you’re behind the counter – how do you find what you’re looking for?

I needed a break from work, so I left the office to get a cup of coffee and clear my head.

Rounding the corner, I shallow-breathed the familiar smell of urine-soaked sidewalk. In the doorway, four dope-sick junkies lay in a crumpled heap.

Maybe they’d know how to rob a pharmacy.

They were a jumble of thin limbs riding out the pain together, heads collapsed into chests.

Nah.

In the 1989 Gus Van Sant movie, Drugstore Cowboy, robbery is never a one-man job. In one scene, a young, handsome Matt Dillon walks confidently into a corner drugstore, followed at casual intervals by the rest of the crew, played by Kelly Lynch, Heather Graham, and James Le Gros. They scatter around the store, pretending to browse the greeting cards and gum offerings until Nadine (Graham) fakes a seizure. As the employees and the pharmacist come running, Bob (Dillon) dashes behind the counter, crowbars open a drawer, and sweeps what he can into his coat pocket, slipping out the side door before he’s discovered. Nadine’s seizure miraculously stops, and the three remaining crew members head for the getaway car.

“So, how’d we do?” asks Diane, Bob’s wife, played by Lynch.

“Eh, so-so,” he replies. The camera zooms in on one of the stolen bottles: STOOL SOFTENER.

The crew has more bad luck later at a hospital. While Lynch and Le Gros distract hospital staff by spinning donuts in the parking lot, Dillon breaks into the stash. He barely has time to express disappointment in what he finds before being interrupted by hospital workers investigating the noise. “Demerol, shit!” he whines, and he runs.

Back at the office, coffee in hand, I looked at the pile of notes I’d made and the multiple windows on my computer screen open to various government agencies. I considered the choice Jaylan and I had to make: Marriage or Medicare?

When we decided to get married, we knew it would carry financial risk, but we mostly thought about that risk in the abstract. In Washington State, for example, the debt you bring to a marriage remains your own. Any debt you incur once married, however, belongs to both of you. When one of you has cancer, it’s easy to look down the road and imagine a financial minefield. Faced with the details, it seemed rational to consider knocking over a pharmacy. This is a weight that most couples I know didn’t bear on their wedding day. There are other differences, too.

My brother Patrick married his wife Amy in the most beautiful wedding recently. It was an intimate affair. The ceremony took place beside a stream amid a grove of summer aspen in North Lake Tahoe. The bride was stunning, the groom adoring, the family overjoyed. We danced ourselves warm all the cool night and sent the happy couple off with a massive group hug as, in the last moments of the reception, under starlight, dozens of family and friends spontaneously threw arms around each other, celebrating love, the perfect day, and the blessed couple at the center of it all. Truly, for my brother and his wife, their whole lives are ahead of them.

In photos, their wedding day happened in a dreamscape: soft, filtered by yellow-green light and leaf shadow, everyone under the spell of hope and happiness. It is with a decidedly sharper lens that I look to my own upcoming ceremony.

Reality is plain-spoken: if Jaylan and I get married, my income will be considered as part of his assets and will put him over the line of $24,000 annual income allowable for a couple to be eligible to receive the prescription drug benefit through Medicare that covers his cancer medication, one of which costs $8,000 per month out of pocket if not covered by insurance.

For the past few weeks, we’ve been navigating the healthcare bureaucracy at a furious pace, trying to determine whether the potential consequences of getting married are worth the risk, and exactly how much risk getting married would mean.

The key problem is this. One of the drugs that Jaylan takes is off-label for his disease. In other words, this drug hasn’t been approved by the FDA for treatment of glioblastoma multiforme (GBM). If a drug is off-label, then by rights, an insurance company can easily reject a patient’s request that it be covered. Jaylan’s previous insurers, and Medicare, his current insurer, have thus far approved this drug, and as he’s now qualified for the income-based benefit, the cost to us has been zero dollars per month for the last year. But if we get married, he’ll no longer qualify for that benefit. And while Medicare would likely continue to approve the drug, the insanely complex copay system administered by Medicare-partnered insurance programs would subject us to a widely fluctuating monthly cost; for example, looking at the rest of the year, September’s copay would be $660; October’s copay would be $2,150; November’s copay would be $1,450, and December’s copay would be $165, to say nothing of the cost we’ll continue to incur for bi-monthly MRIs and visits with a neuro-oncologist. You see, there’s something called a “donut hole” in Medicare coverage. And 2016’s copay schedule? It hasn’t been published yet.

It’s hours I’ve spent on the phone with Medicare, DSHS, and my insurance company in the last few weeks, and more than I can count on both hands.

According to the 2014 Centers for Medicare and Medicaid Services statistics released by the Department of Health and Human Services, more than 54 million people were enrolled in Medicare coverage in 2014, a 183% increase in enrollment since 1966.

I don’t know how they do it, those 54 million people.

This is our third medical coverage change in as many years. Each time, the intricacies of the system and the mountain of paperwork required have boggled the mind, and each time, the process has left me stressed, worried, and wondering how some people manage it. After all, Jaylan and I have solid research and self-advocacy skills. What about people who don’t?

We are financially literate. What about people who aren’t, not to mention those who simply aren’t literate at all? We are good at brainstorming scenarios and trying to figure out what we don’t know that we don’t know. We ask good questions. What about people who aren’t, who can’t?

Like other institutions, the health care system seems to exercise favoritism, awarding the most to those who have the most already, and leaving those at the bottom to jump through a difficult series of hoops which require resources of literacy and time that the least fortunate and most in need among us may not possess.

If you can parse legalese, wend your way through the labyrinthine permutations the system presents, and take the time to make the right choice, then after hours, days, or weeks of anxiety and effort, maybe you find meed. Or maybe you find the minotaur.

As for us, at least we have options. Option one: We don’t get married. Jaylan stays on Medicare. Option two: We get married. Jaylan goes on my terrific insurance. Quickly, then, we reach a new crossroad of stress and anxiety: will the new insurance policy approve the drug he needs? If they were to approve it, the copay would be a predictable twenty-five dollars a month as long as they continued to approve the drug. If they were to reject it, the cost would be somewhere between $8,000 per month for what we get now from the pharmacy and, if our doctor were to give us the okay to get a version of the drug from India, $1,200 per month. In other words, if insurance didn’t approve the drug, the best case scenario would mean that all of my disposable income would be spent, every month, on one drug. The worst case scenario would be crippling debt and immediate bankruptcy—financial ruin, to say nothing of the weight such a reality would exert on every other aspect of our lives and relationship.

The drug in question, Valcyte, is one that an increasing number of GBM patients are seeking, using, and trying to find a way to pay for. It is a drug that fights a common viral infection that has been shown to be correlated, but not proven to be causally related, to GBM. Since the day he began taking Valcyte, Jaylan has been convinced that Valcyte, more than anything else, has been responsible for his continued survival.

When faced with a safe, sure thing and a potentially dangerous unknown, especially when the stakes are high, the only good choice can be to choose safety. We see that, Jaylan and I. We understand that we can’t risk the insurance company not covering the drug on which he depends for survival. But we also just really want to get married.

This is our rock, this our hard place.

Few moments in life are imbued with as much good feeling as a wedding, and we want that for ourselves. In our lives, so beset by grave concern that changes shape but never lets up, we crave the opportunity to win the day away from cancer. Ostensibly, we still can. As others have argued, it’s not the marriage certificate that matters. It’s the moment, the spiritual union of souls, and the public declaration of love. We know. Even if we can’t get legally married, we can still have our ceremony, still ask friends and family to bear witness to our love, still enjoy a day when we dress beautifully, hold hands in a gazebo, exchange rings, make promises.

Except, Jaylan says, that maybe we can’t. Maybe we try, and we can’t win the day after all. Maybe we try, but we can’t get out from under the feeling that cancer has, yet again, dictated to us the circumstances of our lives. And maybe that detracts from our happiness, just a little. Maybe that drop of bitterness is intolerable, and we forever remember the way it discolors our otherwise lovely wedding day. Maybe, Jaylan thinks, that’s another risk that’s too big to take.

I hear him. I see how he might imagine our wedding day in photo-negative, cancer peering darkly from every corner.

At Patrick and Amy’s wedding, I cried watching Amy dance with her father, in part because Amy was so beautiful and her father so dear, and in part because of the way the lyrics of the song they danced to resonated: My wish for you is that this life becomes all that you want it to – your dreams stay big, your worries stay small, you never need to carry more than you can hold . . .

I was sitting next to my father, who was also tearing up. We laughed through our tears, leaning into each other, and I wondered if he knew what I was thinking. My worries are huge. I am constantly carrying more than I can hold. And as far as dreams – well, I have them after all. Jaylan does, too. We dream a lot. Perhaps there will still be a ceremony in September. Perhaps Valcyte will make it through the FDA approval process for GBM soon, and we can get officially married. Perhaps. We dream of this, and more.

If I climb high enough and look down from above, I see no cancer, and no ceremony, either; our decisions bear no significance, hold no intrinsic value. There are only the summer bright trees, blushing soon now to autumn, and the peaked hats of orderly rooflines. With enough elevation, the neat grids of our roads disappear, until the lives of men are reduced to their monumental efforts to tame the land into squares. Trees converge with trees; lakes are fallen on the land like tears under a microscope. Rivers meander through mountains. Beyond the small topography of our individual lives, there’s so much to see.

 

 

7 Comments

  • Jaime Wood says:

    Nicole, this is such a lovely, difficult article. The point isn’t so much whether this decision is important on a grand scale or whether it will be the most practical one, it’s that cancer — something that happens to the body at the molecular level — has to be considered in every single decision you make, whether the decision is about joy, marriage, or money. It shades your life. In a way, this is a story about our limitations as humans. The longer we live, the more we recognize them. When we were small, we thought we could do and be anything, go anywhere…at least someday. Now we know that life is a series of forks in the road, and once we choose to go in one direction, it may be impossible to get back and try out the other way, and the road we take has consequences that we may not fully realize until we go down it.

  • Nicole says:

    Thanks, Jaime. There are so many ways I could end the sentence that begins “the point is . . .” The way you expressed it is true.

  • Cynthia Olson says:

    Nicole, I wish you and Jaylan were not forced into a corner like this. I say, no matter what, let’s get together and celebrate your love and commitment to one another.

    With family and friends gathered there together bringing Love and Hope for healing and peace~ you and Jaylan could draw strength from the outpouring of unconditional love and
    your cheerleaders present.
    We do not walk in your shoes and cannot imagine the obstacles you both face. Please know~ our Hearts share in your pain. It kills me I cannot help in some way to fix this. I don’t have the answer. Please share with Jaylan, there is a need among the folks who love you ~to celebrate the two of you. It’s all I have. Love and Hope and the need to share that with you.
    I admire your perseverance, your head on approach and your determination to beat this thing.

    Please do not let Cancer take this day away from you or me.
    When Jaylan beats this monster, we come together again for a brand new celebration.
    Love you my beautiful niece~

  • Nicole says:

    Thanks, Aunt Cindy. I appreciate your support, so much. Update: the ceremony is on! :-)

  • -My heart breaks for you and I am in awe of how strong your both are.

    -This essay speaks to the people who are in similar situations as you and it speaks to everyone else because you made it so personal and so honest.

    -I want you and Jaylan to have your day. I want you to have a long and loving life together.

  • Kristy Smith says:

    Tomorrow Love wins. Marriage is not a piece of paper. It is a Divine bond of souls of which even Jaylan’s cancer cannot destroy. We cannot wait to bear witness to the magic of this day. You two shall stand as a beacon of hope to the one truth we all crave to know as our own: LOVE CONQUERS EVERYTHING
    “For I am persuaded, that neither death nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor any other creature, shall be able to separate us from (the Divine Love of the Highest, the Father of Lights, cascading down on us).” Romans 8:38
    This is our prayer for you, that you would feel the trembling of the whole Earth assembling to celebrate the LOVE between you above all things on your sacred day.
    Our hearts are full in your pain yet confident in your perseverance and untouchable commitment to love, the most precious gift of all. For this we will be ready to rejoice!! We love you guys, thank you for the opportunity to gather with you in celebration despite all odds. Bear hugs and kisses

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