Today is a blog two-fer. The first is the most frustrated post I've written yet. It spilled out last night and needs to be shared. The second is maybe the most excited. Here's the first. Feel free to skip to the happy one.
*A point of clarification: This letter is to my neurologist, not my neurosurgeon. My neurosurgeon has been the shining light in this whole cancer experience and is featured in the Proof of Life film.
October 3, 2018
Dear Dr. ______
Yesterday I spoke with your Nurse Assistant for the fourth time in as many months (to be fair, she's one of many staff involved), asking her to again renew one of my two anti-seizure meds that has run out again because you are renewing it month-to-month instead of for a full year. This is the fourth month since I switched to an online pharmacy, the only accredited online pharmacy in the US. (Believe it or not, the cost for my meds now is the same as my deductible was back when we had health insurance.)
Every one of those months before this, your office has sent the prescription to the wrong pharmacy. As of yesterday, your clinic still had the wrong pharmacies listed. Between that and the delay getting hold of you to approve a renewal, I have gone days without these crucial meds and in one case had to pay for a three-day set of bridge meds from a local pharmacy that cost the same as a month’s supply from my online pharmacy.
You told me that with the golf-ball-sized hole in my brain, it was amazing I could walk, let alone run. And yet you have held back from renewing an annual prescription of meds that are working well. Not only that, you have insisted I come in to talk with you, rather than call or email me.
But here’s the thing. We have no health coverage, because we can’t afford the $1500 per month premium. So I have to pay for the visit. Plus we still owe somewhere around $12,000 after paying off that same amount over the past two years, while my wife is going back to school in part so she can get a job with health benefits.
And what will come of a visit anyway? Early on, you had me try two other medications that didn’t work, indicating it was a process of trial and error. We’ve found the one that works. Nothing has changed—in the end, you’ll renew the prescription.
There are dozens of people waiting a year or more to see a neurologist. Let one of them take my place. They probably need it far more than I, and they probably have health insurance to cover the visit.
Your nurse assistant asked why I waited to call in about the two-day lag between when I found out I needed another prescription renewal. Let me explain exactly what’s at play here. After 18 months of treatment where medical “experts,” led by a radiologist whose specialty has a well-established 30% error rate, gave a treatment that caused not only seizures but unnecessary radiation treatments that now have destroyed so much tissue I can never have general radiation again; when not one, but two invisible brain infections caused fluid to leak out the top of my skull and past the temple and again bring seizures, along with major surgeries; when those infections rendered the previous bone plate toxic, resulting is plastic surgery that removed part of my right lat muscle as well as causing the further chronic seizures at the core of this discussion; when my oncologist wrapped up our relationship with the prognosis that based on my history, the terminal 3-5 year cancer may not come back for 5-10 years and I could see the uncertainty in his eyes—at that point, I realized I had no control.
When some medical professional or their staff decides my medication is not a priority, I can beg and plead, but in the end, you all go home to bed at night seizure-free and don’t think of it. And when you promise to call me back to confirm you’ve followed through on your promise, it’s my cue that you won’t. Every time.
Or at least, that’s what history has to say.
So in response to your assistant’s question, THAT’S why I sometimes don’t follow up right away. And in response to your insistence that I come see you, THAT’s why I have no intention, until something’s wrong up there. Even two years after the surgeries that caused the problems, I’m tired. And fatalistic. Will the emotional energy return enough to override the fatalism? I can’t say. Do you or your staff really have my well-being and health at heart? I’ll give the benefit of the doubt, if only to a limited degree. Would I switch to another physician and clinic if there wasn’t a shortage of neurologists? Probably. But it’s unlikely I’ll have the chance to find out.
Your reluctant patient,