I made it! After 18 months (and 15 months post-BMT) I have moved back to Stanford. Being sick makes planning things so hard, and I wasn’t even 100% sure I was going to come back until I was actually packing my things. I still feel like the other shoe could drop at any minute.
I was very conflicted about coming back to school. I’m not in perfect health – I was in the hospital a few weeks ago – and people keep telling me to relax. First of all, I do not relax. But more importantly, I really needed to have a life again. Lounging around sounds so great when you are super busy, but having no direction was isolating and depressing.
Treatment made me nocturnal. Falling asleep at 2 AM was a good day (usually it was more like 3 or 4). Waking up by noon was an accomplishment. With this in mind, coming back to Stanford was scary. I scheduled all my classes for afternoons, but still, it’s awkward to be on a completely different life schedule from everyone else. Shockingly, the sleep problem I have been struggling with since the beginning of treatment has resolved itself in my first week of school. I think it’s because I’m tired after running around all day and excited to wake up in the morning. What a relief.
I’m about one month off of prednisone and so far, so good! I am doing a hydrocortisone taper to help my body’s natural steroids wake back up, since I was on prednisone for over a year. It’s been going really well – I am down to 17.5 mg per day (was on 30 when I started). I have about 5 weeks to go. My face is getting closer and closer to being normal again. They say it takes about three months to return to normal after being on prednisone, so hopefully I will get more and more beautiful over the next few months. I have a secret fear that I will be off prednisone and still horrified by the way I look, but I guess there’s always plastic surgery. In other good news, I was recently moved to once monthly BMT clinic! I have been going every two weeks forever, and having a once-a-month doctor’s appointment feels like a totally reasonable, normal person amount of doctor’s appointments. I am still immune-compromised and unvaccinated, but in about three months we can begin testing for immune reconstitution, at which point I will be declared normal, released from BMT care, and transferred to long-term oncology care. I’m not quite there, but I can see the light.
Here’s a picture of me looking kinda normal!