Ghosts in my Machine
I started having pretty severe back pain coming home from ASTR in November, right before the election. Then, on my way to vote, I tripped on the beautifully maintained Roslindale sidewalk, and felt that dreaded tweak of muscle spasm that usually means some vertabrae pulled out of place. Fucking Trump. I did all the things you do for back pain: I went to the chiropractor, I got massages, I did yoga and some pilates. I gobbled down Ibuprofen.
Then I went to London to do research on disability and sexuality for a Fulbright Award. London was amazing and the people I met through the research were whip smart and hilarious and insightful. I went all over the city, walking miles and miles and miles in a way you can only do in real cities where there are always new people and sites to watch as you pass through different neighborhoods to keep your feet from noticing the distance.
I knew that I would miss my family, but I had no idea how much. Every night I had terrible violent dreams where the kids were dying horrible deaths that I was helpless to prevent. In one Leo was bitten by a poisonous snake that shot acid venom into his skin, and he was screaming out in pain from the burning. I knew he was dying and all I could do was hold him and tell him the burning feeling was just the sun shining down on him, that were at the beach and it was warm and everything would be okay. I woke soaked from crying, exhausted from imaginary mourning.
I started to make accommodations for my back. I was great at powering through when I had to-- teaching or interviewing or even just hanging with friends. On days when I didn't have to leave the house I spent a lot of time on the floor, on my left side, which seemed to relieve the unending sense of being punched just under my right ribcage. Sleeping got hard as the positions I could lie in diminished down to just one, and most nights were divided into multiple sessions of lying in the bed and lying on the floor watching TV. The terrible dreams started infiltrating my waking life, and I kept finding myself walking back from the tube station bawling. I felt overcome by loss without any idea of what was lost.
One day soon before I was to return home I finally reached a point where I couldn't power through anymore. I cancelled two interviews and went to urgent care. I had a high fever, and in the infinite efficiency of the NHS the nurses checked me for infection and then declared that I had the flu, which, according to their guidelines, "often causes back ache." I tried to explain how this was no ordinary backache and they gave me a pamphlet with core stabilization exercises.
I went back to the flat and looked up "back pain and fever." I called Matthew in tears. "One of the things that can cause back pain and fever is cancer," I said. "Tell me I don't have cancer." You know what he said. It was the same thing I had said months ago when the tiniest wisp of worry had floated into my mind when the pain started. I was done with cancer. Been there, done that. No more.
But of course he was wrong, and I was wrong, and my motherfucking doctors were wrong. Because of course it was cancer. The cancer supposedly excised out during my mastectomy had gnarled its way into my spine and was eating it up like the dream snake poisoning my beautiful boy. I had thought my terrible existential feelings of loss were instigated by being separated from my family, and of course they were. But they were also the beginning of the end, the messages from my spine, from my core, that it was dying. The spine surgeon we met with last week showed us images of shadows where my vertabrae are supposed to be, and described T-10 and T-11 as "ghosts." The only thing holding my spine together now is cancer, the thing that wants to devour it and me.
I need to explore what it means to be turned inside out like this, to become a ghost even while I'm still here. I know most blogs like this are meant to keep family and friends updated about treatments and prognoses and to some extent feelings, and I want to do that too. I will update and ask Matthew to update about radiation (starting today!) and hormone therapy (bitch alert!) and whatever else comes next. I want to try to exorcise the guilt that is trying to eat me up even quicker than the cancer. I think this platform will allow you to comment and post too, so please do if you want to. My hope is that all the good wishes and support will create something calm and strong and loving to surround me and my family as we try to move through.