One Year, Part IV

 A few days after my birthday, Jonathan had a follow up appointment with one of his doctors. He was told that out of the 40 lymph nodes they removed, the ideal situation was to find the single cancerous lymph node and feel secure that there was no further spread in the body. They found two. While assuring him that this was still pretty good news, he advised that he wanted to push forward with a round of chemo to ensure that any lingering cancer cells were destroyed. We were crushed. Had we prolonged this suffering by not just taking chemo from the beginning? Had we opted for it, the treatment would have been more intense and for a longer duration of time but would that have been it? Were we making any of the right choices? There was no real way to ever truly know. All we wanted was to be certain that he was cancer free. We picked up the pieces of ourselves and put on a brave face. It was only one round! Plus the doctor said he would likely still have his beautiful head of hair, something that Jonathan was very intent on keeping, and the symptoms wouldn’t be too bad. It was only 3 weeks. We could do this. 

But just a few a week later, in a pre-portal surgery check up, Jonathan’s oncologist  changed his tune. I can’t remember exactly what the reasoning was, but he wanted to do two rounds instead of one. The grand total of weeks now came to six. While we still felt lucky, knowing how long some chemo sessions can go, we were confused and heartbroken. Jonathan took the news especially hard. He called me while I was at work and I hid in the bathroom for an extended period of time. Tears were shed as we prepared ourselves for what came next. It’s difficult to have to prepare yourself for what will be some of the shittiest six weeks of your life, to watch yourself change in ways you can’t control so rapidly. We both broke down. We just wanted this to be over.  It felt like for every small positive moment we had, there was something in the shadows waiting to knock us back down. I told him I loved him so much and returned to work. When I got home we hugged for a very, very long time. 

Jonathan’s first chemo appointment was scheduled the day after his birthday. He left in the morning, filled with nerves. Someone once called it “first day of school jitters” and I quickly corrected them. This was worse. We didn’t know what was coming and how he would feel. There was no anxious excitement, just dread. As Jonathan headed to the hospital, I called an uber to the office. While it was a perfectly normal day there, my head was elsewhere. I wondered how Jonathan was. I felt angry that because of Covid I couldn’t be there with him. I had a few calls, finished everything I needed to and eventually called an uber to pick him up at the hospital. When he finally emerged he didn’t look terrible, but he looked out of it. “I’m so tired.” he said to me as I quickly tried to order us an uber back home. The car ride was silent, and when we got home, he hit our couch like a ton of bricks. He slept for the majority of that evening while I sat close by. Every so often he would wake up to ask me for water. At one point, I checked his temperature and he was running a fever. I put a few more blankets on him but he asked for more. He was shaking and uncomfortable and I told him we should get him into bed. He tried to sit up and couldn’t. His limbs were in pain and felt like they weighed. I tried to help him off the couch but he couldn’t move without hurting, so I laid him down and rubbed his hair. I gave him some water and kissed his forehead. Eventually, he was able to muster up enough energy to get into bed. It took all of my strength to get him up and hold him while he moved from one room to another. He groaned while I held him and told me he was in pain. Slowly, we got him into the bed.  He fell asleep just about as soon as he laid down. Honey jumped up onto the bed and laid her head over his legs. I turned off the lights and went into the bathroom. I grabbed the fluffiest blue towel we owned and held it over my face to muffle the sounds from my sobs. This was day one and the experience was already horrible. I spent the entire night watching him sleep to make sure he was ok. In the morning, we did it all over again. 

Luckily the next day was my work from home day, and I was able to fit in a quick nap between a few calls. Before I knew it,  I had to pick Jonathan up again. In the morning he texted me telling me he was feeling ok and thought he could get himself home but I didn’t care. I know it was extra money that frankly, we didn’t really have to spare, but the idea of him on a train with his immune system weakened while the city still tried to manage itself through the pandemic made my skin crawl. Plus, I felt it was important for him to come out and see me there waiting, rooting for him. His body was going through something so hard and traumatic. I wanted to be able to take over him the second he got out of the hospital. As we headed home he again was silent as he tried to sleep.  When we got home, more silence as he drifted in and out of sleep while I kept a watchful eye. Again, we struggled as we moved from the living room to the bedroom and again I added more time to my total hours awake so that I could ensure his well being and safety through the night. 

This repeated on and off. Some days were better than others. Between caring for Jonathan, staying on top of my work, my responsibilities with Honey and everything else I felt like a hollow shell of myself. Everyone else was dealing with their own woes during the pandemic so I didn’t want to bother anyone with how miserable this experience was. My saving grace was a denim jacket that I decided I wanted to start bedazzling. As Jonathan rested after each session, I’d set up my TV dinner table and began the methodical work on the jacket. I swear to this day that the rhythmic motion and focus of putting rhinestones down in rows is the only thing that stopped my mind from shutting down completely. Eventually we got to the one day a week cycles and after three, long grueling weeks we were done with round one. We were both exhausted and hurting.

 As soon as round two started, Jonathan began to notice pieces of his mustache would rub off if he blew his nose. After a few more sessions, he texted me while I was at work to tell me that chunks of hair were starting to fall from his head. I knew this was coming and yet I was still anxious to cross this road. Jonathan’s attachment to his hair is deep. A lot of his identity is woven through the follicles and strands. “It’s only hair” a lot of people have said, but it’s not that simple. Jonathan loves his thick hair. The thick, strong dark hair that he shares with his mother. Pre diagnosis, he told me was thinking of growing it out long again. Now, chunk by chunk, it fell out because this medicine was attacking the cells. I got home, exhausted from a long day, and saw the concern displayed all across his face. Earlier he joked about how mangy he could get with his hair falling out. Now, he was somber. He decided to take a quick shower as I prepared dinner, but called me into the bathroom after only a short time. There was so much hair on the shower floor that for a second I thought he had tried to shave his head while showering. “This is just from washing my hair,” he said quietly. I tried to think of things to say but couldn’t find the words. “I need to shave it.” That night, with the buzzer being the only sound, Jonathan shaved off all of his hair. 

Jonathan isn’t much for words. He’s not great at expressing when he’s anxious or sad. A lot of the time he internalizes it and I carefully open the door and show him that it’s possible to let it out. However, during this time I didn’t want to push him. I could see he was sad but he was too tired to begin to deal with it. Somedays, after rushing from work to pick him up, I’d find him in a daze walking from the hospital to the cafe across the street to sit down for a moment before we’d get in the uber home. While I requested a car he’d hang his head back and sleep. Sometimes his mouth would begin to open and I’d scoot over to his side and sit on my legs so that my shoulder was high enough for him to rest his head on. We’d return home and he would sleep for hours. During the weeks where it was one session per week we got into a routine of sleep all day on chemo days, rest the following day and a small return to normalcy until the next cycle. After what can only be described as the fastest longest weeks of our lives, Jonathan finished his last chemotherapy session on October 6th.

My parents were kind enough to give us a ride that day. Between the rides to work, the rides to the hospital, the rides back home, the copays for each and every single chemotherapy session and labs, our savings were non-existent. We considered taking the train from time to time but were too worried about Jonathan’s immune system running on fumes and being too close to people while the pandemic continued on. We were lucky to be able to do that at all, but I was still grateful to have my parents cover us from time to time with a ride. We waited anxiously for Jonathan to appear from the hospital and when he did we all cheered. My mom made makeshift confetti out of hole punched paper and we threw it in the air to celebrate. When Jonathan finally got to the car and we hugged both of us let it out. Tears of joy and relief came down and we held each other for a long time. We were both cautious to say it, since we had been burned in the past, but it finally, really, felt over. 

Life returned to normal for us slowly. Jonathan built up his strength everyday and his body healed. Around Thanksgiving some X-rays showed that Jonathan had blood clots in his lung and in his heart which sent us through a loop, but the doctors were quick to get him on medication and the problem resolved itself. On December 10th, Jonathan’s doctor officially said that Jonathan was cancer free. My mother bought us a fancy dinner at the house to celebrate. Jonathan’s hair has been growing back slowly but surely and his strength is back in full force.

And that brings us back here, one year later. I still don’t feel like I’ve fully processed just how emotional and traumatic this was for us while we lived through an already emotional and traumatic time period. I still feel like I’m playing catch up from everything that transpired. I spent the last year of my life being my husband’s caretaker, a role that I would take on again and again and again, but I still haven’t figured out how to care for myself and my mental and physical well being after the fact. Sometimes I have dreams where Jonathan’s cancer has returned and that it’s worse than before. I wake up in the middle of the night covered in sweat with my heart racing, only to find Jonathan sleeping peacefully next to me. I wish I could tell you that after a year, we’re back to normal and everything is great. It’s certainly not bad, but I know both of us still have a lot of processing to do. Sometimes I want to ask people to still be gentle with us as we figure that out, but life doesn’t stop for anyone or anything. 

The good news, though, is that I know that eventually we will be there and have worked it out. We are alive and that simple fact of that is not lost on either of us. Tough as it was, we made it through a global pandemic, through cancer, through fear and uncertainty. We fucking made it. We made it together. Our bond has grown stronger and I find that we’re more patient and gentler with each other. We appreciate our lives and each other more. Through all of this pain and hardship, we’ve found that our instincts were right. Marrying each other was one of the best choices we ever made. I hope I can come back and read all of this in the future feeling so much better. Remembering this as a distant memory and hopefully with everything finally processed. I wish I had a better way to end this but I don’t really have one. I’m just really hopeful for brighter days ahead for the two of us. If you’ve made it this far I’m grateful. I love you, I really mean it.