I have a phone on each ear, listening to different automatic messages convey how very important my call is, and how I will be connected to a real person very, very soon. I have been listening to variations of this message for five solid days, scribbling details about times and names into a new binder. The new binder is different from the old one, but I’ve attempted to keep it light. The old binder was named Super Crazy Binder of M Awesome! and BRAIN. The new binder has a cartoon on the front of a happy, smiling M, with an arrow pointing to a spot in his brain, labeling it M’s New Dumb Tumor. The binder itself is called, M’S BRAIN BINDER OF ROCK- ROUND TWO, FIGHT!
When the hold music ends and I finally reach a human being, they offer to relay a message to somebody else who is unavailable, tell me they know nothing, and then tell me to have a great day. Not just a nice day, a great day. Every third or fourth time, I point out that I’ve definitely had better birthdays. Sometimes because I’m trying to make them feel guilty about putting me through this, sometimes to remind them that I, and my husband, are real human beings and maybe inspire them to acts of human compassion, sometimes because I want to remind myself that is is my birthday, because that’s something fundamentally nice about the day that no amount of bureaucracy can fuck up for me.
I have filled up three solid pages of the new binder’s journal with notes, often contradicting, about what needs to be done so that my husband can start treating his brain cancer. There are four doctors involved, and all of them agree about exactly what his care should be. It should not be this hard to move forward. We are circling around and around, and nothing is getting done.
One doctor can’t schedule his tests until another doctor schedules his surgery. He can’t schedule surgery until the first doctor schedules his test. A second surgeon can’t schedule surgery until the other surgery is scheduled. The first doctor can’t schedule his tests until insurance authorizes it. Insurance won’t authorize anything until another doctor sends in more forms. A nurse tells me there are no openings for my husband’s pre-surgical tests for over two months. Another doctor tells me he’ll squeeze my husband in as soon as surgery is scheduled. And we go around again.
I hear over and over and over, “We’ll call you by the end of the day tomorrow with the answer.” The end of the next day comes, and I am more depleted with more unanswered questions.
I wonder, over and over again, what somebody who didn’t have a full-time advocate would do in this situation.
I am disheartened and exhausted, and I make another phone call.
I finally lose it at a few nurses, one of whom I’ve never actually met. I tell them the situation is unacceptable, that this is outrageous, that NOBODY DISAGREES WITH THIS TREATMENT, and yet they can’t work together to make it actually happen. I shame the hospital on social media, and administrators reach out to me with confused attempts to help that lead nowhere. Everybody has a little piece of information I don’t, all of them tell me some of my information is incorrect. I am up to five pages of notes about phone calls, all taken in the span of one week.
The doctors reconvene. They agree their plan, while good, was impossible. If my husband didn’t have a rapidly growing tumor, that would be one thing. But he does, so expediency matters. And they have learned through listening to dozens of increasingly frustrated messages from one patient’s wife that their plan cannot exist in an expedited way. They toss the plan and start over, rendering my five pages of notes nothing more than kindling. I try to consider one longer, more complex surgery instead of two separate procedures as a bright side.
They schedule tests that imply surgery and do not bother calling me with this information.
I am angry. And I am sad. And I am so tired all I can do is feel a sense that crying would be appropriate right about now, but I cannot muster the energy to do more than lay in a vaguely fetal position and breathe. My husband comes into the room, and I find the energy to smile ironically, and tell him the hospital is run by fuckwads. His laughter is better than food.
My toddler stands on a stool at my bedside, where I have set up shop- the covers littered with binders, stacks of business cards, insurance cards, and an assortment of phones, a laptop perched on my knee with the screen displaying a description from the insurance website on coverage for Intraoperative Neurologic Monitoring, and my kindle scrolling over a hundred cheerful birthday messages on facebook. She is the most beautiful thing I’ve ever seen in my life, and I squeeze her soft shoulders in a hunched hug until she whines to return to her marathon Pocoyo viewing. And I make another phone call.
This is the hard part, I keep telling myself. This is the worst of the bureaucratic bullshit. Once he’s scheduled, once the insurance crap is over, once we have all the plan in place and we’re moving forward, all this is going to be over.
I know this is a load of horse shit. But it’s also not. The fact is that this isn’t THE hard part, it’s A hard part, and all the hard parts are equally hard, discouraging, drawn out, and painful.
THIS is the hard part where I have to act like a woman possessed by a scheduling demon to get my husband into treatment. Next comes the hard part where I spend a whole day in a waiting room while a near stranger slices into his brain, probably for longer than the last time- I’m betting on waiting for a full twelve hours. Then comes the hard part of watching my husband recuperate from surgery, looking for symptoms both of brain swelling and brain damage, of increased or decreased seizure activity, allergic reactions to medications, and infection. Then comes the hard part of bringing him home to our third floor walkup and the constant attention of his three daughters, where I will face the task of cleaning week old blood out of his ear and reminding the children not to make too much noise. Then there’s the hard part of physical therapy and possibly new orthodics in case of more reduction in his motor skills, as happened last time, before the hard part of chemo.
And then, if all goes well, the hard part of spending years watching, and waiting.
This is the hard part.
This is the hard part. This part is almost over.
It makes everything a little easier to face.
But this is also the easy part, where we spend money we don’t have on birthday stays at hotels and restaurants, drinking Pinot Noir and forgetting for a few minutes at a time that this is hard. The next part is easy, because it’s a single day- and then over. The next part is easy, because we can spend it together, laughing at flocks of interns and smuggling in decent food. The part after that is easy, because taking care of my family is how I show my love. The next part is easy, because it’s all actively helping, all concrete things to make life easier and better. After that it’s easy, because we’ve done chemo before, we know how to manage it, we know how to get through it, and in a way it’s bordering on nostalgic. And the last part is easy, because it is simply a fact of life.
This is the hard part.
I’m almost through it. I’m almost to that finish line where I look around for the medal I’ve goddamn earned through all this BS, and instead I’m reminded that in this decathlon I’ve only finished the first event.
But I’m going to get through all of them. We’re all going to get through all of them, even those secret ones I don’t know the details for yet. We’ll get through them, whatever they are.
And my reward will be standing on the other side, slumped exhausted against the man I love, knowing we’re going into another hard part together.
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