Highs and Lows (Mostly Lows)

1 1/2 years post-transplant. 1.5 years of surviving – of learning that the hard part is living, not dying. I capped off 18 months post-transplant in New York City, my first plane travel since the horrific plane ride back from South Africa.

I came back to spring quarter ready to take on too much as always, but Week 1 has been a trainwreck. First, I ended up in the ED with severe eye pain only to be diagnosed with GVHD of the eyes. I had eye exams two days of the week, and lost both days completely due to the dilation required for the exams. On Thursday, I had an IVIG infusion, which I reacted to and thus was unable to finish. This is particularly annoying because I get high doses of benadryl to ideally prevent reactions to the infusion, so I slept the whole day and will have to sleep another whole day to actually get the infusion.

Thursday I also had an oncology clinic appointment. At this point, I have GVHD involvement in my gut, skin, eyes, and liver. I also have weirdly high levels of eosinophils in my blood counts, which may be due to GVHD as well. Despite my best efforts (this includes, I’m not kidding, a diet of predominantly full-fat Kraft Mac and Cheese, protein shakes, Coho caprese paninis, and gummy bears), I have lost 20 pounds since February. At this point, I have no option but to go back on prednisone. Devastated is an understatement.

I don’t know what to do – attempt to catch up in the courses I am already behind in as of week 1? Take a reduced course load? Withdraw and go home? All the options suck. I typed this from a dark starbucks, where I am wearing sunglasses because the light hurts my eyes. Someone hellppp meeee.

One thought on “Highs and Lows (Mostly Lows)

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  1. Brooke, I found your blog through the Stanford Magazine piece you wrote, one of the best personal stories I’ve seen about the turmoil of being drug (literally!) kicking and screaming through the worst/best the human body and mind can experience: you almost died (several times) but survived to tell the story to others.

    I am a Human Biology graduate (1976) and now almost 30 years into doctoring college students at a public university and am humbled by the delay in your diagnosis and how that prolonged your suffering. Your body is continuing to fight, and fight hard, both the cancer and the life-giving new marrow so the battle you find yourself in the middle of is very very exhausting. School is the goal we set up for ourselves and gives us reason to get up in the morning but I think you have the perfect Human Biology project going on right inside you right now — talk to those awesome Human Biology mentors and faculty about how you can make life better for other cancer survivors (and yourself) by concentrating on your recovery right now and sharing that story with those of us responsible for the health and well being of our patients. You have much to teach right now, even more so than what you are working on learning.

    May this time of your life be one you can look back on — far far back and wonder not only “why?” it happened to you, but how it shaped who you became.

    blessings to a fellow Human Biologist!

    Emily Gibson, M.D.


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