Tomorrow

I just keep reminding myself that, last week at this time, walking sounded impossible.

I was two days out of surgery and moving from the ICU to a regular room, but first they wanted me to…get out of bed? Stand? Sit in a chair? Walk with a walker? What.

But I did that, and I continued walking when they told me I was supposed to, and then Joe and I got up every hour or so to do laps around the ward. It doesn’t feel like a lot, but this is what progress looks like. It’s slow. The forward momentum feels minuscule, some days, non-existent. But every day, I feel a bit better, at least physically. The mental game is harder and I’m not sure I’ll ever beat it.

The day of surgery, we got up at 4am to get to the hospital by 5:30. We’d barely slept. I was hungry and thirsty but mostly because I knew I couldn’t eat or drink anything. My skin felt dry because I wasn’t allowed to use any lotion. The moon was full and the sky was clear. 

Surgery check in went smoothly until the nurse came to get me and I realized Joe was not, in fact, allowed to go back to pre-op with me, as we’d originally thought. I don’t want to talk about how hard it was to leave him at the elevator, and walk alone and bleary-eyed behind the nurse, as she led me to a small room where I changed into a gown, put all of my personal belongings in a plastic bag, and crawled under an inflatable heated blanket while random people came in and out poking me in various ways.

Everyone was very kind and calming and I wasn’t as nervous as I thought I’d be. I knew that all I really needed to do was fall asleep and let the professionals take over. Still, I was worried about how I’d feel when I woke up and terrified about what recovery would entail.

And just like everyone else always says, the anesthesia process was hella weird, and I woke up feeling like no time had passed at all. When I woke up in ICU, knew I was at the hospital, but I had this feeling that I was on a conveyor belt or train track and it would slowly move me past various medical professionals as they did procedures to me. I assume that’s NOT exactly how it went down but I wasn’t super aware, who knows. Joe was allowed to see me and he reports that I looked, and I quote, “fucking crazy,” [Joe note: I did not use those words, JENNIE] given my fresh incision, how swollen I was, and that I was flailing around a bit (probably trying to get off the train).

I was in ICU for a couple of days, but my memory of it is really blurry. I came to very slowly and held most conversations with people with my eyes closed. It’s where I saw Joe again, though I wasn’t very aware of him at first. In fact, the best example I can give of my time in ICU was that, the other day, I asked Joe if I’d told him they made me take another COVID test while I was in ICU. His reply? “Jennie…I was there.” Then I found some pages where I’d scrawled notes and questions and had zero memory of any of it. It was like how I used to write poetry sometimes when I’d come home from the bar, and it was…not good.

Once I moved to a regular room, we established somewhat of a routine. Mostly…walking, talk to doctor, drugs, talk to nurse, more drugs, talk to more nurses and doctors, sleep, sleep, sleep. Sleeping was the toughest. Not only were people in and out of the room taking vitals all day long, but people were coming in to clean, bringing food or meds, taking more of my blood or asking me a million questions.

Did I mention I can’t really talk right now? Because that was the big part of the surgery. Removing the part of my tongue that housed a tumor, which they discovered during surgery had continued to grow aggressively in the three week span of time between diagnosis and treatment. So. It’s good they got that out of there, I guess. They also cut down both sides of my neck to remove lymph nodes, and replaced the tissue of my tongue with tissue from my thigh, so I have a giant, gnarly scar down my left thigh that, honestly? Looks pretty badass.

The not talking has been the hardest. When I had the larger trach, I couldn’t even make any noises. When they replaced it with a smaller one, I could at least vocalize, but my tongue is still swollen and wrapped in gauze and not super usable, so I still can’t verbalize much. It’s been hard not to be able to communicate certain things, like that I’m in pain. I can say fuck, though. Which I think we can all agree is the most important.

The surgeon hand delivered the pathology results to Joe one day while I was getting some sort of scan, I can’t remember now what. She said they’d gotten everything with clear margins. Three of the lymph nodes they removed were cancerous. But they’re gone. No longer in my body. Good-bye! Getting that news was the first release, the first good cry, I’d had since this all started. I’ll still likely need radiation and chemo just to be sure they get everything, especially given how aggressively the cancer grew while I was waiting for surgery. But what a goddamn relief. And now we’re finally home, which I can only imagine will be a more restful place to recover (and our favorite nurse discharged us, which I consider a good sign).

And through this all, I can’t believe what a steadfast and supportive network I’m surrounded by. I know I keep saying that but everyone has been so wonderful, offering to help with things we don’t even know we need help with yet. My medical care team is…phenomenal. I honestly just have no words. Everyone is incredibly kind and supportive and just KNOWS THEIR SHIT. It’s comforting to know we’re in such good hands. They even make sure Joe stays properly hydrated, which I appreciate because I can’t yell at him to drink water right now.

Poor Joe, you guys. While I was in the hospital, he slept on this tiny cot that his feet hung off. He was the one who had to wait 14 hours from pre-op drop-off until they took him to see me in ICU. He’s been the one to handle all the medical and insurance questions, and make sure I have everything I need and he has everything he needs, and that I’m not too bored or sad or angry and that I’m doing everything I’m supposed to do. He made sure I has the approximately seven pillows I needed in order to be comfortable in the hospital bed. He puts lotion on my feet, you guys. He’s the best egg.

Despite all the good things, most days are a bit rough, honestly. I’m still very swollen and uncomfortable from surgery. I’m hungry but can’t really eat anything, I’m just fed through a tube in my stomach. I’m still in a bit of pain but not as much as I thought I’d be. I’ve still got this goddamn trach in my neck, and we found out at the end of my hospital stay that it will likely have to stay with me through radiation, in case the radiation causes more swelling and affects my ability to breathe (fun).

I’m learning things all over again and I’m very impatient. I don’t want to walk three laps around the hospital ward, I want to go on a hike. I don’t want to learn how to talk again, I want to sing along to Hamilton because there has to be some reason I know all the words, right? I want to DRINK A GLASS OF ICE WATER. The best I can do so far is drink a few trickles from a syringe.

This is all normal. I’m right on track for recovery from a surgery of this magnitude. And small victories are still victories. I had four drains from surgery that have been removed. I can breathe on my own now (which is why I want the trach out so badly). I can walk on my own. I’m not constantly tied to an IV anymore. I’ve learned how to tube feed myself (which…is weird, you guys, I’m not kidding). I pooped, which is the thing people were most excited about.

And I no longer have aggressive tumors growing in my body. That’s huge. And terrifying. And though it didn’t cause the sense of relief it did in Joe (at least not quite yet), because I know there’s still a long journey ahead, I know we’re now at least headed in the right direction.

Thank you all for your kind words, cute animal photos, jokes, well-wishes, and good vibes/thoughts/prayers. They’ve all been felt and very much appreciated. And on days like this, that feel a bit harder? They really make a huge difference. Thank you for being part of the team to save us.