An amazing woman, Heidi, said this to me while I was in the hospital last week. She said it to me after she told me that her daughter, Chylee, has no more viable treatment options. Afterward, we spoke about how her 14 year old daughter felt about dying. We also spoke of the things we were grateful for – for our nurses and doctors and families. I am grateful for many things, but have struggled to put them into words because I feel so defensive about how impossible it seems to be for people to admit that so much of this is horrible. I know that it is difficult to admit that a situation is terrible, that we so frequently feel like we must solve a problem, but often a “you’re right, this sucks!” more than suffices (though you can throw in a gift card to Madewell, Crate and Barrel, or Sephora and I won’t complain).
Right now, many of the biggest problems in my life revolve around cancer. They are not as serious as my problems were when my chemotherapy didn’t work or when I almost died of GVHD or when I was in the ICU on a ventilator. That does not mean they are not real or valid. So frequently I have friends afraid to tell me their problems because they fear they are not valid in the face of my illness. They absolutely are. In the same way, my struggles with having a puffy face or bald patches in my head or weak muscles or just plain wanting to go on vacation are valid in a dimension separate from my gratitude that I am alive.
When I complain to someone that no one can figure out why my hair isn’t growing in and they reply “Look at the bright side, at least you have hair!” or worse “At least you are alive!” it makes me feel like they do not see that my humanity is equal to theirs, like they feel that because I had cancer I should simply be grateful to be alive and have no other wishes. Imagine if you called up your friend, told them you were going through something tough like a break-up or an injury or a bad grade on a test and they said “At least you’re not dead!” Kind of jarring, isn’t it?
Last week, I saw a dermatologist to address the large bald patches on my head. I have never felt so relieved as when she said “This is not normal.” I got a punch biopsy of my head (imagine a hole punch and your skin, ew) and should find out soon whether they are able to determine why my hair isn’t growing in normally. Some theories are that it is Busulfan-induced alopecia (permanent), my dysfunctional immune system attacking my hair follicles (not permanent), or my hair follicles are dead (permanent). Let’s hope for the immune system one.
My silver linings are that this doctor heard me and validated me without soliciting my gratefulness for my life. My silver linings are spaghetti and meatballs and peppermint bark and warm coffee while it is raining outside. They are my scheming to return to school, a beautiful trip to Point Reyes with some important people last week, watching reality television and feeling completely unashamed. They are things to look forward to, like my upcoming Levinthal Tutorial at Stanford and my research in pediatric immunotherapy. They exist alongside my grievances.
A reminder of how much I have lost – I kept a journal throughout my treatment up until my bone marrow transplant. My silence during those months was meaningful. I was so incredibly ill. On January 21, I picked up a pen for the first time since before my transplant and wrote this: