I need a burrito and a vacation

Actually, what I really need are functional T cells and a healed intestinal track, but those are a bit more abstract.

I am still in the hospital three months after being admitted for graft vs. host disease. I still have chronic GVH which means that I am on an extremely restricted low fat/low fiber/low taste/low fun diet. Basically I am subsisting off of white bread, plain meats, almond milk, and canned fruit. And TPN (IV nutrition). It is as bad as it sounds.

It’s winter quarter right now which is weird because I feel like it was just summer. Hearing about everyone’s summer internship plans is simultaneously giving me the same competitive anxiety I had while setting up my internship last summer and depressing me over the part where my summer plans are to remain indoors/fear germs/eat white bread (also I’m happy for my friends who are, as always, doing amazing things. I’m not a complete heathen).

Speaking of longer-term planning, here are the plans: T Cell Photopheresis. I have already received every frontline treatment for GVH and mine is especially severe/resistant (lol fml). I am way way waayyyy better than when I first got GVH but I am still retaining 5-10 pounds of fluid and have other active symptoms. So we are doing this thing where they take my blood out and filter out the T cells then treat them with a drug called methoxsalen and expose them to UV light. The UV light activates the methoxsalen and damages the T cells. Afterward, the T cells (and the rest of my blood) are returned to my body and will be less reactive/more tolerant, Fun facts: no one knows why this works but it does so that’s cool, it only helps about 50% of the time but why not try it, I have to do it 2 days a week for 6-8 weeks. My first day is tomorrow, wish me luck.

My other plans include getting the hell out of this place before I go even more senile. I have spent so much time on this hallway that I frequently reach that headspace where I’m like “Is this real? Is my life real? Is anything real? Did I really have cancer? Is my head really that shape? Is Kanye West really $53 million in debt?”

I have been told that I can go home on Wednesday after photopheresis and the rest of it can be outpatient, but this is also the third time this admission I’ve been told I can go home so I’m not getting my hopes up too high. When you are first diagnosed with AML they tell you that treatment is 6-8 months. Then when you find out you need a transplant (not all AML patients do), they tell you it will be a 6-8 month recovery from the transplant. Then you get severe GVH and guess what, it’s a 6-8 month recovery from that. At this point I will forever be healed in “6-8 months” so if you were thinking about asking when I’m coming back to real life, the answer is always 6-8 months from your question. Cool.



3 thoughts on “I need a burrito and a vacation

Add yours

  1. Dear Brooke,
    Thank you for this latest post….I will be imaging the blood treatment working with 100% success! Sending you some fierce love from your Beantown peeps!!!!


  2. I just wanted to leave a note, we’ve never met and I’m actually entirely unsure how I stumbled on your blog but I am so so impressed with your writing through all of this. Your humor and sense of self are so strong, and though I do not know you at all you seem to have a great head on your shoulders. Besides all of that, your writing is fantastic! Please keep it up, whether it is writing just for you or writing for others.

    Thank you for sharing these thoughts — very sincere wishes for you to be able to head home soon!



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