It’s been a crazy few weeks. I started an internship at Memorial Sloan-Kettering on June 5. I also took my finals in New York during the first two weeks of working (s/o to the quarter system) and flew back for a weekend for graduation and a family event. In the last couple of weeks I have finally been able to settle into New York and I really like it here.
There is something interesting about being in a new place after this diagnosis. While it’s not a secret that I had cancer, these people don’t know me in the context of going through treatment. It’s a relief to be treated more normally. For the first time in a long time, the people around me are not acting like I’m fragile. This has brought out a new set of challenges, because the reality is that I am still fragile. I have been having a really hard time managing my GVHD lately. While it is somewhat controlled, I have not had a complete response to steroids and my eyes, skin, and mouth are still very irritated. For context, here is a picture of my hand and feet:
The GVHD is the worst on my hands and feet, which is unfortunate because this makes functioning pretty difficult. My eyes are significantly improved since getting my tear ducts plugged, but they are still irritated and light sensitive.
While I am keeping my care primarily at CHO, I have seen some doctors at MSKCC while I’m in New York. We are going to try some new things, including light therapy for my skin and some topical steroids. We are talking about an additional systemic immune suppressant, but it’s so hard to weigh against increasing my risk of infection.
I watched my class graduate from Stanford on June 18. It was two years to the day from my AML diagnosis. I didn’t expect to be so emotional, but standing in the stadium watching my class receive their degrees was really painful.
It’s almost like I’m processing all of this for the first time. For a long time I really tried to block out the worst of my feelings about getting cancer (remember the Zen space?). I’m sad that this happened to me, and I’m angry that I’m still suffering so much. I also have a lot of good in my life – being able to spend a summer away just two years after diagnosis is shocking. I’m turning 22 in November. 22 is not a number I ever imagined for myself. Making it to 21 seemed far-fetched for a long time.
I’ll end with some pictures of me having fun this summer (it’s not all bad, I promise).