How weird, to be going back to school after watching a timeline full of graduations, trips, new jobs, and graduate school programs. I started last week, and it is bizarre. I watch the freshman in the quad or the older students going to campus events and think “was that really ever me?” I guess it was, though I only had a year or so at Stanford before I got sick.
I guess, if I’m being honest, the best way to describe it is mad. I’m mad that I have to be here – not because Stanford is awful or I don’t like my classes (I do), but because I have to be here. Because I didn’t choose this. And watching my friends get to choose the next phase of their life – whether that’s more school or work or a well-deserved break – is heartbreaking. I spent a lot of my time in treatment working to convince my friends that their problems are still valid, even if they aren’t “I might die of cancer.” But now, it’s really hard to listen to them complain about a job or a grad school assignment when all I can think is that I would give anything to have those options right now. I know this is a “me” problem, not a “them” problem, so I’m still figuring out how to handle it. For now it is lonely, really lonely.
With regard to my health, ups and downs. Lots of downs. I went to LA for the 5th and final week last week, and ended up at CHLA because I was having a hard time breathing. Just getting a nice tour of all the children’s hospitals in the country. I have a little pneumonia, but we think I’m on the right antibiotic now. My skin, eye, and mouth GVHD are significantly improved. We aren’t sure if it’s the prednisone or the ruxolitinib or the low level laser, but we’ll take it. My liver enzymes are also significantly improved – at my last check, my GGT went from 1,000 to about 600. Still super abnormal (normal is <50), but in the right direction. However, I am currently experiencing progressive muscle/joint GVHD, which basically means my skin and muscles are tightening to the point that I can’t reach my arms above my head, bend over, or turn my back. My dad and I brainstormed some potential careers should I turn into a complete fossil – so far the winner is renting out myself as a second person for the carpool lane. Also, I am INSANELY itchy 24/7 from the skin GVHD, which means I can enjoy essentially nothing and I get almost no sleep. This is pretty concerning, especially because I am on so many GVHD meds right now so I really shouldn’t be experiencing progression. So, we are adding another – IL-2. IL-2 actually helps T cells grow, but acts selectively on regulatory T cells, which work to quell the angry, GVHD-causing T Cells. The best part about IL-2 is that I get to administer it to myself as a daily shot. Yay.
In other news, I like my classes – a design school class about navigating the healthcare system, an upper division immunology class, and a gen ed intro to computers class (lol). Stanford hooked it up with a sweet studio apartment. I was officially accepted to the Honors Thesis program for my major (Human Biology), and my project is an extension of my work from last year, which I am pretty excited about. I am building on some recently published work that was funded by the St. Baldrick’s Foundation. The other day, an article about it came up on my facebook timeline, which is pretty cool: link.
I reached my 2-year transplant anniversary on Sept. 24. To say I am disappointed would be a massive understatement. I thought I would be healthier by now, I thought I would have much closer to a normal life. I had my two-year BMT follow-up, which means they tested a bunch of stuff in my body (bone density, heart and lung function, x-rays, etc.). Everything basically sucked, though my bone density somehow increased (?!) from 2.4 standard deviations below the mean last year to 2.1 standard deviations below the mean. Killin it. Childhood cancer awareness month ended yesterday, but I will continue to be aware every moment of every day.
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Day +731: 2 years and not a single easy day. They told me 2 years was a big milestone, the one where you start to think about the C word…not cancer, cure. But these past two years have left me wondering what kind of life we really fought for. While I am grateful for my life, GVHD and hair loss and this amount of suffering make it confusing to view this as a victory, especially in comparison to most 21 year olds. So today I am grieving and celebrating and hoping for easier days ahead. If you want to help me celebrate, send a donation to @stupidcancer, one of many groups that has helped me reach this day (link in bio).