This is something that I have debated sharing, because it’s hard to share the hard stuff, but I’ve worked too hard to keep this site honest and transparent to give up now.
I have been having a hard time coping. The way I got through treatment was by knowing that it would eventually end. The GVHD has not been getting better. In fact, it’s worse. It’s in my eyes, mouth, skin, and muscles. I can barely open my mouth, eat, or use my hands. I am miserable. I recently went way up on steroids (60 and 30 every other day), started a new drug for my skin called acitretin, and started doing UV light therapy (for my skin) and low level laser therapy (for my mouth). Between all of this, I am taking 15+ meds a day, using three different creams for my skin, and going to a doctor every single weekday (UV 3 times a week, laser therapy 2 times a week). I feel like I am having such a hard time existing that I am watching life pass me by. It is so hard to get through the day that there is no energy left for the things I used to enjoy.
At the same time, the hair issue has not been resolved. I have had three different opinions from three different dermatologists. Some of them think it’s permanent and some of them don’t. I feel pretty hopeless about it. It’s hard, because it’s a cosmetic issue so I feel like it gets pushed to the side as something that doesn’t matter. It does matter. I feel like I will never feel beautiful ever again.
I originally wanted to go on a trip at the end of the summer, but I cancelled it to come home and see my primary oncologist again. We are starting ruxolitinib, which I think has a good chance of helping me. But I am coming to terms with the idea that I will never be my old self again. I might have GVHD forever. I might always struggle to get through the day. My hair will probably never grow back, and maybe I’ll never look in the mirror and feel positively ever again. There’s really nothing I can do about it, but that doesn’t stop it from hurting.
I am finishing up my internship at Memorial Sloan Kettering in this coming week. It’s been an amazing learning experience, even though it’s been really hard because of the GVHD. In some ways, I’m glad I pushed myself to do it. In others, I feel like it only made the differences between me and a normal person more apparent. As some of you know, I was recently accepted to Mount Sinai’s FlexMed program, which means I am admitted to start my MD in 2019. It’s possible that I will get better by then. It’s also possible that I won’t, and if that happens I have no idea how I would ever possibly get through medical school. Chronic illness is really hard – in a lot of ways it is way harder for me than being acutely ill was. I constantly feel like I am disappointing the people around me, but most of all I feel like I am disappointing myself. The reality is that I need to recalibrate my expectations to the body I am stuck in. But it’s hard letting go so many pieces of yourself, and it seems like the GVHD and lack of hair just keep taking more and more.
My dermatologist made me take this little survey about how my skin condition affects my life. Sooo that’s how that is going: