Two years ago today, I was discharged from the hospital after a five-day stay, a surgery, and on the heels of another day and night’s stay at a different hospital.
Obviously, it wasn’t the best time. Over that week, we went from not quite knowing what was inside of me to understanding that this would be my life for the foreseeable future (even without an official diagnosis, which came later). From my hospital room, we’d emailed and texted and called the people we love to let them know what was happening. I emailed my professors, figuring out what to do about my finals that week and class registration for my last quarter. I got tons of tests and blood draws and was in a fair amount of pain, in addition to the general fear and anxiety of waiting for the diagnosis.
But I also started to feel safe, cocooned by my amazing nurses. I met Dr. K, who swept into my room for the first time at noon on a Saturday with a fleet of people. She exuded capability and knowledge as she explained that she was in discussions with three different surgeons about how to safely do my lymph node excision and biopsy (the tumor itself was not operable and pushing on my heart and lungs, so there was concern my chest would collapse if the surgery was done the wrong way). There was a grownup in charge and I was getting things done, making my plans. My tumor was still pushing on my lung and trachea but if something went wrong, I knew they would handle it. While multiple tests a day was exhausting, it was also comforting that someone was telling me what to do next, what to eat, how to manage my post-surgery symptoms. There was this sausage potato breakfast skillet I loved (when I was allowed to eat) and part of me liked this information-gathering, purposeful phase.
It also felt like we were in a play, and if we all played our little parts well we’d get to go back, return to where we came from. I had to get one more test done on Wednesday morning, and was finally allowed to leave a little before 6 PM. My nurse gave us a pep talk on maintaining some normalcy, on finding a life in all of the strict medical instructions we were receiving. Our moms were both there, chatting with the nurse and writing things down and organizing all the stuff that had accumulated over the stay. Dr. K told us we’d come back the next day for diagnosis, then go straight to a fertility appointment to start IVF. As I left the room, I felt like a brave little soldier, dutifully facing the world as I walked gingerly to not jostle the long new scar on my clavicle.
To leave the oncology floors at Northwestern and get to the parking garage, you have to walk through the pediatric oncology lobby. It has a big aquarium and is brightly colored for the kids—it is as friendly as a hospital can be. But it also leads you past hollow-eyed, worried parents with their bald, impossibly young kids. Every time I passed a bald head, saw a little person with a surgical mask on, I cracked open a little bit.
With that walk, I realized we were crossing over. Into our new life, a different world than the one we’d lived in before we walked into the ER. This was no longer playing house at the hospital, where Nico set up a Chrome cast so we could watch TV and Kate ordered fancy pasta one night for a little party. Now I was one of the stories people walk past in the hospital lobby, a too-young person in a mask.
Nico and I suddenly and simultaneously started sobbing. This is not usually how we operate, and in the two years since it has never happened again: only one of us breaks down at a time, and the other stays calm. But as we walked out, we were both crying so hard that we had to find a bench in the parking garage, chilled by the Chicago evening and gasping in the fumes as we both tried get it together. Our moms were quiet, giving us time and space to let the moment happen. I have a vague memory of of my mom crying too, and Nico’s mom murmuring, “I know.”
We knew that this was the end of a hospital stay, but the beginning of something bigger and scarier.
One year later, in February 2019, we were sorting through everything we owned getting ready to leave Chicago for our move to New York. Now that we are a year out, I can say that I don’t think this was the right decision—we should have stayed longer so I could recover more first. I think Nico’s boss would have been supportive of us continuing to delay the move, and I was definitely not physically ready for the challenges that New York held. But as with everything that’s happened and the bizarre decisions that came with it, we were just doing our best with what was in front of us. Either way, we were busy, and I was still so sick that we didn’t have the distance to reflect on the anniversary. We just kept moving forward.
I again didn’t think much about the anniversary ahead of time this year—and then Valentine’s Day arrived, with its unmistakable reminders of time and occasion. Valentine’s Day 2018 was the week of my first ultrasound, and the day of mine and Nico’s last stupid fight before we knew how bad things were. It was one of the last days that I could pretend the lump on my neck was a fluke, something that I’d get antibiotics for and move on with my life.
This year, Valentine’s Day triggered a deep sense of grief, anger, and isolation in me. I haven’t spent a lot of time being angry in the last two years. Maybe once in a while, but mostly I try to be pragmatic or brave or just sad about missing out on things since I got sick and struggled through recovery.
But suddenly, I was furious. I’m working, doing freelance writing—I am, as always, lucky that I have skills I can use from home doing something I enjoy. But I can still only work for a couple of hours at a time. Then my brain hurts, and I can’t process things anymore. I get headaches and have to take prolonged breaks. Not like a 3 PM coffee to wake myself up (yeah I know, knee slap, we all need a little pick me up, whatever), more like an hour or more of cognitive rest so I can read sentences or talk to a human again and understand what they’re saying. The times when I literally can’t understand things are frequent, scary, and disheartening. I thought they would be over by now.
Last week (the anniversary of my first hospitalization, as we move along the timeline of anniversaries that my brain refuses to shake), we stood in line at the New York DMV, and it started to hit me that I might never have a Midwestern ID again. I am not a New Yorker. I think I’ll always be a St. Louis girl living somewhere else. Now that my family has moved, I don’t go home for holidays. I go to West Hartford, CT and stay in a random hotel while my friends in my real home get together and catch up and text me gossip (if you guys are reading this please keep aforementioned gossip coming).
The losses of the last few years—of my hopes at my planned career timeline or kids in the near-future, of my hometown, of the community I spent seven years building in Chicago, all piled up. For two years I’ve just tried to make the best of situation after situation beyond my control—my health obviously, and with the move, I wasn’t making money, I didn’t have my own health insurance. Nico’s career has an outsized role in our well-being and if he’s even late to work too often I start to panic about what would happen if he lost his job. I know we had to move sometime. But why did we leave Chicago and move somewhere so alien, so overwhelming, so unimaginably enormous? I miss Chicago and St. Louis and the people I love there with an ache I haven’t let myself feel before. This is a great city, but it is not home.
All of this pushed me into a new, unexpected rage phase. After the DMV, I had to email with my Chicago medical team trying to coordinate my next scan in April. I was pissed that I was back on the scan timeline, coordinating my life around it and feeling the worry creep back in, overwhelmed by details as I tried to decide which day to fly in, when to get the scan, which day to have an appointment, and tried to remember which tests I need to ask for in order to potentially get my port removed in May.
I laid in bed at night wired with anger: Why does everyone else get to move on, live their lives, do normal things without these kinds of arrangements? Without the daily fucking calculations about energy use and whether I can handle doing multiple things in a day? Without shooting neuropathy pains in their hips every time they they take a step? The world is a disaster, and I went to an immigration protest but it flared up my nerve pain further—when can I be the active person I want to be again? Why is my career this derailed by ability issues? I thought about my recent bloodwork visit, and the doctor telling me that I need to take extra precautions with Coronavirus: you’re not quite far out enough to be safe, he told me, so if they issue a warning for any population, you need to stay inside. I’ve lived in isolation already, for almost 9 months last year. It made me want to crawl the walls even considering the possibility, and I refused to think about it further. It wasn’t supposed to be like this, I think, over and over.
Then, because apparently this is just how things are going for us, my sister had a rough week in her ongoing, terrible divorce—yet another thing that was supposed to be better two years later. Why are we back here again, as if two years haven’t gone by?
I realized in all of this that, uncharacteristically, I don’t particularly want to see people. I don’t want to go out for drinks and pretend to be normal. Working again has been a big energy adjustment and by the end of the day, I’m too fatigued to be a normal person talking about normal things. So I gave up. I let a few people know that I’m not doing great, but you don’t get tons of follow-up questions when everyone has had to hear all of this for two years. They have their own stuff. This is the lonely time.
And I guess that’s the update today. Usually I try to end my blog posts on a high note, a hopeful glimpse of what’s to come. As always, I know that my life has lots of good things in it. I am deeply lucky and privileged. I know this will get better, that this is a phase I have to go through. I have also learned that intense gratitude can live just fine as a next door neighbor to rage, and that maybe they even make each other a little bit stronger.
I think everyone who goes through a grief process hits this isolating anger stage. It took me a while to get here, but I think it’s been coming ever since I sat on that bench in the Northwestern parking garage. So today, I’m going to give that forced positivity a rest. Hope will come back soon.