My symptoms in my eyes, mouth, hands, and feet have continued to improve and they are essentially gone. I have a bigger problem, though. I have developed sclerodermic gvhd, which is essentially skin tightening. My skin has become thick, immobile, and tight on almost my entire body. My chest and abdomen are the worst, to the point that I am struggling to breathe due to the constriction.
This is really scary because I am already on two high-dose immunosuppressants – prednisone and ruxolitinib. Because this happened to me while extremely immune suppressed, the concern is that we will not be able to get control of the scleroderma and it will just continue to spread. Long death in slow motion – at least AML is quick about it.
For a beautiful, heart-wrenching depiction of GVHD, read this article: http://www.fredhutch.org/en/news/center-news/2015/04/tackling-graft-vs-host-disease.html. Unfortunately, this story hits close to home.
Now I’m sure your next question is “surely you aren’t still in school, right?” Well, sorta. I’m still at Stanford, but I’m on a reduced course load consisting of one d school class and units for my thesis. Just adding to the cute collection of W’s on my transcript – thank you cancer. As far as next quarter or even next week, I am taking things day by day. More like minute by minute. I enjoy my research and I like being at school. It is important to me to have something to wake up for every day. I want to hold onto my independence as long as possible. But every minute is hard – pain, itching, tightness. I am beginning to struggle with normal daily tasks like getting dressed, so unless this turns around I will probably take another leave.
As far as the plan goes – I started IL-2 about three weeks ago, but it takes 6-12 months to really work. We have deemed the ruxolitinib a failure, and I will be switching to imbrutinib, which is the first drug FDA-approved specifically for chronic GVHD. I have also been referred to a GVHD specialist at Stanford and we are in the process of setting up a consultation at Fred Hutchinson in Seattle, where many of the country’s GVHD experts are. I asked both my BMT doctor and my oncologist whether they had ever seen this before – rapid, new GVHD symptoms two years out while on high immune suppression. They said no. So we have no idea what will happen. There are still more meds to try even if these fail, but the options are getting slimmer. The other concern is that I will contract some sort of deadly infection due to the severity and length of immune suppression.
I also went to a retreat for young adult cancer survivors last weekend, and it was wonderful – in a painful, get-in-touch-with-your-feelings way. Since I am on the younger end of “young adult,” I was among the youngest of the group. This was nice, especially since being treated at Children’s Hospital meant that I was usually the older one (which is fine, but it was a nice trade). I was worried that I would hate it because frankly I am incredibly jealous of people who come out of cancer treatment with fewer complications than me. But turning these “people” from an abstract concept to real people made this easier – obviously, I wouldn’t wish this suffering on anyone, especially the wonderful people I met at this retreat. I still hate when people are like “they went through the exact same thing as you!!” because the reality is that they did not. But we all have stuff – visible and hidden – and I internalized that I am not the only person who didn’t walk away from treatment unscathed. Really, none of us did.
For now, moment by moment. I am putting one foot in front of the other, showing up to class and lab, working on my thesis, wondering if I will die, hoping the imbrutinib will work, too tired to think about what comes next if it doesn’t.
Here’s a picture from the retreat: