Over the past 4 years I’ve tried almost every drug on the market. Injection, pill, infusion, steroid, you name it. Nothing was working. My body was unresponsive to all treatments attempted and it was beginning to take a major toll, both physically and emotionally. Now, at this stage in the disease I had become pretty accustomed to receiving negative reports at my monthly rheumatology appointments. This one particular appointment, however, took the gold.
So I went in knowing I wasn’t doing well, but had no idea just how bad it had become. I remember my doctor pulling out this stupid chart with a skeleton on the computer and telling me that 80% of the joints in my body were inflamed. All I saw was red. All red. No green. Just red. Reds never good. Not on exams, not on skin, not on a skeleton. Can they at least give that skeley a smiley so it can slightly resemble a real person? The discussion that follows was kind of a blur but this is what I can recall….
Doc: “You know I’ve been seeing you for over 2 years now.”
Me: “Yep, and you must have a nice beamer parked next to my cavalier because of it.” (ok maybe I didn’t say that, but I SO wanted to)
Doc: “You’ve already tried quite a few of our available options. Methotrexate, enbrel, prednisone, humira, lefludomide…
…more drugs I can barely pronounce let alone spell…
Me: “Yeah and whatever we do next, no more methotrexate.”
Doc: “In all of the patients I see, you are in the top 1%. This disease is progressing quickly and if we don’t stay on top of it…”
Me: “I take it this is the only time being in the top 1% isn’t a good thing?”
Doc: “I know you are optimistic about this, but I’m afraid you are not taking your situation seriously enough. Your disease has progressed at astonishing rates, when we take your age and the numbers into consideration… BLAH BLAH BLAH”
And there I was, sitting quietly. Completely zoned out by now, only able to see his lips moving. No words. Just movement. I was focused on planning my escape route and wishing I was anywhere besides this cold, drab office.
Damn it doc. Don’t you know I’m trying to avoid the inevitable. Let me find my happy place so I don’t ball all over the place while trying to keep this kotex liner you call a hospital gown snug on my naked bum.
Doc: “You are extremely atypical. We need to begin talking about some of our other options.”
Me: Other options? Other options! What is this? What’s happening? “oh” Deeeeppppbreatthhhhh. “k”
The less I say the less of a chance I will lose my shit. And my gown. Keep. It. Together.
That’s when he dove into a discussion of our need to consider future medical trials. And my numbers. My age. My progression.my future. Yeah, that’s right about when I lost it. There was no stopping the gross, high pitched, heaving sobs that were radiating through me. damn I hate crying. Especially at the doctor. Not the time, nor the place. They’re doctors, not shrinks. Naturally, there was no Kleenex to be seen for miles. I think they do that on purpose so they have an excuse to leave the room from people like me. He ran.
A few minutes later and a trash can full of snotty tissues, I was miraculously able to gain composure. Doctors have a way of delivering information all at once, right. Well I’m certainly no doctor and without a doubt have slower processing speeds. This was information I could handle. It was. I knew it was coming; I simply wasn’t ready to hear it out loud.
We then worked together to establish a treatment plan for the now. I told him that while I appreciated him discussing my long-term health plans and was considering all options, I was not quite ready to go down that path. Let’s discuss medical trials or alternative treatments if and when the time comes. When that’s our last and final option. Until then, let’s just focus on the now. Not future numbers. No ifs. No when. Just my current plan of attack. That’s it, because in all honestly I can’t handle thinking long term. Not with these circumstances. While I know that day may come sooner rather than later, and perhaps medical trials will be something I can no longer avoid; today, I’ve got options. Who knows what tomorrows going to bring. All we’ve got is today. So regardless of those inevitable crappy circumstances that await for us tomorrow, let’s try our hardest to save the stress and tears for then.