If I had a dollar for every time I’ve heard that over the past few weeks, maybe I’d be able to make a dent in my copays.
There is no situation where I will be in good health within the next 6-12 months. My mobility is limited to the point that I can’t take a shirt off. I’m so itchy that I can’t think straight. I am so weak that a flight of stairs is difficult. I can’t breathe. I have systemic GVHD involvement in almost my entire body at this point – skin, eyes, liver, mouth, muscle.
The road to recovery is a long one and it’s not guaranteed. It’s possible this could be my reality forever. But in a best case scenario I will get better. It doesn’t happen overnight, though. It is a long, hard journey that will involve continued pain and discomfort. I will need to keep a central line to do photopheresis to treat the scleroderma. I will continue to give myself daily injections of IL2 (which, by the way, have to go in my inner thighs because they have the least scleroderma). At some point, I will probably restart imbrutinib, which involves lovely side effects such as bleeding, bruising, and nausea. In the best case, these treatments will work and my health will improve. But even if that happens, it will be a slow process. Tiny gains in mobility, slight desensitization in my mouth, fewer days with painful, blurry vision. Meanwhile, I have had to restart the process of strengthening my muscles – almost from baseline. Lots of physical and occupational therapy are in my future.
The idea that 2018 will magically be “better” is naive and it really fails to capture the severity of this situation. 2018 will be hard, probably harder than 2017. I am hoping, wishing, crossing every finger that the outcome of a tough year will be better health, more independence, an ability to enjoy moments of my life rather than gritting my teeth and begrudgingly willing myself to continue living. But please don’t pretend it will be easy or fun or that a magical 1-month recovery will occur. None of these things will happen.
In a brief health update: my central line (the brand new one I got in my jugular) is already out of place. If you remember my last post about central lines (go here), you will know that this is almost comical. Tomorrow, I have to get yet another central line – at least this one will be done at CHO so I won’t have to be awake. I have lost count, but I’m guessing I’m at around 15 lines at this point. In other news, we restarted IL2 and so far my kidneys are fine. I’m still on 50 mg of prednisone a day. Our current plan is IL2 + photopheresis + prednisone. The hope is that we can replace photo with imbrutinib in a few months (then I can get the central line out). We will also probably begin to taper the steroids as the other treatments have more time to work. Shockingly, my scleroderma has improved since getting out of the hospital, and I am carrying slightly less fluid weight (30 lbs instead of 40, how exciting – though an improvement from the 60 I reached while in renal failure). We really don’t know why I am improving, given that I have been off of a bunch of GVHD meds recently, but really we know nothing about GVHD anyway so it’s par for the course.
I just told you a bunch of things not to say to me, so here are some things you can: you can root for a positive trend, for the uncomfortable treatments to be worth it, for my hard work in PT and OT to pay off. For my health to improve enough for me to return to school. For my eventual ability to enjoy small moments like a cup of hot coffee or an especially vibrant sunset. Maybe throw in a winning lottery ticket – it’s about time I got some good luck.
Here is a throwback to 2015. Tbh I feel the same way about 2016 and 2017