So I have been out of the hospital for a couple of weeks and while it is a huge relief to no longer have monitors/people/lights everywhere (especially at night), I still feel very trapped.
Because my immune system is so compromised (due to the transplant and then the GVH treatment), I have to follow BMT precautions at all times. This means washing my hands 4 billion times a day, wearing a mask anytime I leave the house, not going to public and/or crowded places, and only eating processed or freshly home-cooked foods that follow the limited GVH diet. Basically, I am mostly confined to my house except for the 2 delightful days that I spent at the hospital outpatient clinic each week.
I think it is really difficult for people to grasp this concept because I keep getting invited to do things I cannot do, even though I feel like I’ve explained this situation about a million times.
I am projected to be immunocompromised most likely through the rest of 2016, so the current estimate of when I can return to school is winter quarter 2017. I am really exhausted and angry that I am missing out on so much. I feel really distant and separated from my old life and I hate the stupid mask that I have to wear literally to sit on the front porch.
I have some goals for this year, like taking some classes from home and maybe learning Spanish and I would love to fundraise for AML research or maybe do some more formal writing but first I am just going to be sad and angry for a little bit because life isn’t fair.
^me pretending to be a good sport.