The closer I am to death, the easier it is to write. It’s not really about me after all – it’s about what is happening to me. My skin turning to stone, my nerve endings screaming, my mouth and hands and feet rubbing raw, my kidneys failing, my lung function declining, my eyes burning…none of that tells you anything about me. You don’t know anything about me from what I just typed other than that I’ve been through some really bad shit.
Recovery is a different process. I have choice now, something that was completely absent in many phases of my life. The choices are hard. Of course, choices like “do I want to do the phase 1 clinical trial at City of Hope because my chemo failed?” or “should I get a permanent dialysis catheter when the peds and adult doctors disagree?” are hard. But they aren’t so personal. I can tell you what I chose and why, and you’ll probably understand (I didn’t go to City of Hope because I was very likely to die and I didn’t want to die far away from home and I got the stupid catheter because I was at the adult hospital but I didn’t need it and should’ve trusted my own damn peds doctor).
But if I were to tell you about the ways that my illness has impacted my relationships with my friends and family? About people who have really let me down or people who I have really let down. And how I have chosen to navigate those various situations? Or if I told you about my mental health, if I told you what that really looked like? That all would tell you much more about me.
The truth is that there have always been boundaries on this blog, despite my desire for raw transparency. Nothing is false, every emotion is real, but this phase of my illness is very emotional, very interpersonal. I almost don’t trust myself to write openly about it without torpedoing my own future or hurting people in my life. There is also the part where I believe in my future more now, so maybe I should consider the repercussions of my words. But what has always made writing such an outlet for me is…not worrying about that. But writing about illness is easy – the material writes itself. Navigating the complexities of a life that extends beyond hospital walls? Much harder.
I’ll settle for saying that the highs are high and the lows are low. One day I’ll think “Oh things are going great, I should update!” the next day it’s “things are a disaster…I should update.” Based on my own extremely unscientific opinion, I’m gonna say I have 20% of the GVHD that I had in December 2017. Unfortunately, even 20% of before is still bad. But there are moments where I can actually think about something other than being sick. I am graduating on June 16. Graduating. After 6 years of school – the first as a normal human/cancer muggle, the second with undiagnosed leukemia from hell, then a year and a half off for treatment, then a year back before another 9 months off for severe chronic GVHD. And finally, this past school year back. Last quarter, I won a dean’s award. It meant so, so much to me to be recognized for my research. I have often felt inadequate in school – school relies on consistency, the opposite of what I can do as a chronically ill person. So, to be recognized as outstanding was shocking. It showed me that there are people who see past my attendance or needing extensions and instead are able to see the quality of my work. After struggling with disability accommodations with so many professors, to have a professor go out of their way to nominate me for an academic award was so meaningful.
I am struggling to capture all of the updates of the past few months, but here are the basics:
- This dean’s award!! Stanford Daily Article
- Graduating June 16! Message me your address if you want an announcement (honestly would have skipped these but I feel like SO many people have helped me get to this day and everyone who played a part should know).
- The research that I did at Memorial Sloan Kettering in 2017 was published and I have my very first co-authorship!! https://www.ncbi.nlm.nih.gov/pubmed/30872531
- I’m down to 10 mg of prednisone, which is lower than I’ve been on in 2 years (before the chronic GVHD hit in 2017).
- I am DONE (hopefully) with photopheresis. This was a huge burden – it was the reason I had to have the horrific central line that irritated my skin so badly it was torturous. Then when I convinced my doctors to take it out, I had to get two 18s (huge needles) in my arms for 2 days/4-5 hours every 2-4 weeks.
- The reduction in moon face and skin GVHD has allowed me to look almost normal. I am still very upset about even the smaller moon face and skin GVHD I have now, but I feel like I can at least somewhat blend in.
- I am able to exercise more than I could with the more severe GVHD, which is helping with my mobility and breathing.
- I went on a trip to Sacramento with my friend last weekend and it was super fun to show her around the place where I grew up! Also we saw Ariana Grande which was amazing. Also I look almost normal??
Overall, the difference is actually amazing (swipe these pictures to see a before picture):
- It’s really hard to care about school when my life is like this.
- Three people extremely important to me have relapsed and I am absolutely heartbroken. I would write more but they are not my stories to tell. Just know that they are on my mind every day.
- I am still on IL2 daily injections and imatinib for immune suppression (plus the 10mg prednisone). In addition, I keep having gut GVHD flares whenever I get below 15 mg on prednisone. I got to 15 mg in September and this happened so I had to go back to 30 mg and taper again. Now, at 10 mg, it is flaring again. I recently started a non-absorbable steroid (beclamethasone) that stays in the gut and treats the gut GVHD without having systemic side effects. It is $250/month out of pocket, which is why we didn’t try it in September. But now I just need to try it. I hate the American healthcare system for doing this to me and so many others.
- My hair still isn’t growing. I did get another opinion from a dermatologist who actually was very familiar with hair loss similar to mine/related to GVHD. I have a couple options that are unlikely to work, but I can try. This continues to be devastating to me.
- My medication schedule is really wearing me out and I am so tired of this:
- 9 AM: pills, steroid mouth rinse, beclamethasone (which is 2mg of corn OIL that I have to DRINK)
- 1 PM: pills, beclamethasone
- 5 PM: beclamethasone
- 9 PM: pills, steroid mouth rinse, beclamethasone, IL2 injection
- I am struggling to balance what feels like two very separate lives.
The two lives tend to mix at the most inconvenient times. I will be at yoga and all of a sudden I’m crying because I’m mad that this is so much harder for me than it should be. Or I’m in class and all of a sudden I have a flashback and suddenly I’m tearing up while we discuss epidemiology or history or something else that is irrelevant and mild. Then there are times where I’m sick – a few weeks ago I caught a cold virus and had a fever for a couple days. I had to go to the hospital, but for the first time since transplant I had a fever but didn’t need to be admitted. But I felt awful, and of course my brain was worrying about deadlines and group projects while I should’ve been trying to heal. The stupid virus is still hanging out 3 weeks later by the way, but with my immune system I’m expecting it to be here awhile.
When I was laying in my hospital bed all of those days, especially soon after my transplant, residents were working all hours of the night. They were exhausted. And sometimes I thought – they must want to lie down once in awhile. I vowed to never wish to be in that bed again no matter how tired. As a future medical student and eventual doctor (sooo weird and cool to write that), I will be tired. Right now, I’m really tired. But I try to remember laying in that bed and how much I dreamed of this life. I have more hope than I have had in years. This is a long, slow journey and I have stopped setting dates and goals. I thought that by now I’d be off prednisone, that my body wouldn’t still be covered in scleroderma, that I’d feel stronger and healthier. But I am where I am, and right now that means crying at yoga and worrying about deadlines while I have fevers. The take home message is that I have continued to improve in such a dependable way that I am actually considering trusting it.