Hi everyone! People keep asking me questions like “where are you even living?” and “are you ever graduating?” and “what is even happening” and to be honest I haven’t been answering them because I have had the same questions. But now that the dust has settled I can say that I did end up going back to school and I am on track to graduate in Spring 2019 as long as I don’t need another leave. Maybe attempt 3 at my degree will be the one.
The past few weeks/months have had the usual ups and downs, but still an overall upward trend. My skin, liver, mouth, and eyes continue to drastically improve. However, for the past few months I have been struggling with nausea, vomiting, and increasingly quick weight loss. All signs of gut GVHD. At the same time, I recently started a few other medications that could make me nauseous, including imatinib and progesterone. So, I was in denial. But as it continued, my doctors grew increasingly uneasy. Finally, a few weeks ago I started to develop cramping that I knew I had only experienced once before – when I had gut GVHD three years ago. I cried that day, not out of pain but because every time I get one thing under control there is another. My life is literal whack-a-mole. Anyway, I had to go back up to 30 mg daily of prednisone, which has really helped. This is another sign that it was GVHD, since if it wasn’t the prednisone probably wouldn’t have helped. I really resent that it is helping because I don’t want to take it, but I do appreciate that I’m no longer nauseous/vomiting daily.
So, while this was all happening I moved back to school at Stanford. I was reassigned to the same apartment as last fall. Not just the same building but the actual room. I had a feeling this would happen because the building comes with carpet but they had to switch it for laminate/wood since carpet is a dust/allergen/mold risk for me with my compromised immune system. I really, really did not want to go back to this room. My lung function dropped below 60% in that room. My kidneys failed in that room. I thought I was going to die in that room. The last time I was in that room, it was the day I woke up sick and went to the hospital, where I went into acute renal failure.
I thought about asking Stanford for a different room, but I also knew how much I have struggled to get even basic accommodations from Stanford. When the chemistry department refused to excuse a single absence while I was literally under anesthesia for a bone marrow aspirate because my doctors thought my cancer might have returned, Stanford did nothing. It took me 6 months of emailing, meeting with the head of the disability department, and several meetings all the way up to the chair of the chemistry department before my grade was corrected. Last fall, when I showed up to my apartment it still had carpet despite my accommodations saying that it needed to be wood. I already had all of my stuff the day I arrived, so I had to move it all in. They replaced the carpet over three separate days and each time they did a section they completely disassembled that portion of the room and made no attempt to fix it. Keep in mind they are doing this for a student who is disabled. I called them after the first time and asked them not to do it again. They did it again the second time. I called again and asked them not to do it the third time. The third time they completely disassembled my closet (it is made of wire shelves/racks) and left all the pieces and clothes on my kitchen floor. So, given this history of seeking accommodations at Stanford, I really could not put myself through the exercise of explaining that this apartment induces PTSD symptoms for me. I would have had to explain it ten times to people who have no sympathy for me. I just can’t.
I will say that I am repeatedly surprised by how well I am doing. The day I moved back into my apartment, I told my mom that the room is REALLY far from the elevator. We got there and it is not far at all. Like, at all. I was just so incredibly short of breath last year that it felt like miles. It is weird because last time I went back to school (in January 2017) I honestly did not feel that well but was so optimistic and pushed through it. This time, I feel absolutely destroyed, but then repeatedly surprised that my body is doing fairly well.
I reached my 3 year BMT anniversary on September 24, which was also my first day back to school. I want to do it justice and share my thoughts about this past year. I also want to create a photo journal because so much of it is impossible to put into words. But these past few weeks I have been so overwhelmed by returning to school, the return of gut GVHD, and moving back into my trauma apartment. So, you’ll have to give me a little time.
I am learning to re-navigate school again. I love school, really. Like I enjoy studying. I know, I’m insane. Anyway, I am in the best part of my degree because I have finished my core requirements and am working on the upper division classes that I selected myself as my concentration (my major is Human Biology and my concentration is “Genetics, Immunology, and Precision Medicine”). So, this quarter I am taking child global health, a genomics seminar, immunology, and an intro CS class (my last general education requirement lmao). I genuinely enjoy all of these classes, but I am also struggling because I am learning about a lot of things I have experienced firsthand. In child global health this week, we discussed that protein deficiency is a leading cause of child death worldwide. A girl raised her hand and asked “How do we know it is protein deficiency specifically?” I knew the answer. Because protein pulls fluid from your tissue into your veins. If you are protein deficient your fluid accumulates in your abdomen. So your abdomen swells massively while the rest of your body is emaciated. I know this not because I have seen commercials of starving children, but because I lived it for 3 months while inpatient with acute gut GVHD. I was immediately back in that moment and I actually started to cry in class. I stared at my desk and reminded myself that I am not starving right now, that my gut GVHD is controlled even if it is back a little, that I am okay. I’m okay. But I’m also not.
I am leaving you with a happy image of this $120 blanket I bought at Anthropologie that I could not afford yet do not regret one bit. Look at this happiness it has brought (hi Chris)
^really they should sponsor me