One Year, Part III

A surgery to remove the cancerous testicle was scheduled within days of getting the news. Several tests were scheduled in between to make sure everything was on the right track and that Jonathan was able to get through the surgery with no complications. An appointment at the sperm bank was made. A CT scan was done to see if the cancer had spread anywhere else in his body. Navigating these appointments with Covid looming like a heavy cloud over us was proving to be difficult. From what I understand, patients were usually able to have someone accompany them to appointments. Thanks to Covid, this simple luxury was stripped from us leaving Jonathan alone to endure appointment after appointment alone while I waited in our silent apartment. The clouds seemed to part when a doctor told Jonathan that he could have one person wait for him for his first big surgery. Ecstatic that he wouldn’t have to face this alone, we made our way to the Union Square hospital. We signed him in, sat in the waiting room for a short period and then they called him in. We hugged and after a long kiss, Jonathan said “I’ll see you soon”. He disappeared behind the frosted glass windows into the pre-op area and for a moment. I stood silently in the waiting room. As I sat down, I began to cry. I was all alone in the waiting room and my fear finally swallowed me up. I thought of all of the possible terrifying outcomes from this surgery. What if the CT Scan showed that the cancer had spread everywhere? What if there was a complication during surgery and this was the last time I would ever see him? I began to panic and choke on my mask again. Deciding I needed to calm down, I went over to the security desk and asked where I could get water. The man was surprised to see me, and I assumed it was because I looked completely disheveled with swollen red eyes while I tried to speak as I hyperventilated. He was kind, but told me I couldn’t be here. He told me that he was sorry that someone gave me incorrect information, but I had to leave the premises due to Covid protocols. I pulled myself together somehow to find my way out of the building. I thought about where to go to wait but quickly realized there was nowhere to go. All of the cafes nearby were not allowing anyone inside due to their own Covid protocols. I wandered over to the Daryl Roth theater, sat on the steps and cried while strangers passed by and watched. I felt horrible and scared beyond what I could handle. I called my sister who helped to calm me down and once I was in a better headspace I was able to call my friend Paige, who was set to drive us home after the surgery. I asked if she would feel comfortable enough to let me hang out in her apartment while I waited. Being the wonderful light of love that she is, she happily agreed. 

Sometime later, we finally got the call to pick him up. Sitting outside of the hospital in a wheelchair with a nurse, I saw a different person than the man I had been married to for 5 years. Pale and in pain, he got into the car. I put on a smile. It was over! The healing process had begun! I heard so many stories of this being the surgery that ended so many people’s cancer stories. I was filled with hope and really believed that this was going to be it for us, but somewhere between Manhattan and Brooklyn, Jonathan broke the news that the cancer had spread to his lymph nodes. His doctors would let him know what that meant in terms of our next steps soon. Forcing back tears and scared for the future, I pushed my feelings and anxiety deep below and told him, truthfully, that  we would get through it.

We found out that Jonathan’s cancer was a mixture of two cancer cells, seminoma and non seminoma. Some could be physically removed, some could be eradicated with chemo. Neither was 100% certain and each one had its own list of pros and a very long list of cons. Every new piece of this road had forks and suddenly, we had to be adults making these decisions. The details of the next few months are a blur. Just months of never ending anxiety and uncertainty. Endless doctors appointments with new information, figuring out how to get to work in New Jersey while interacting with as few people as possible (which ultimately resulted in almost spending $100 per trip), figuring out medical bills, what was covered under insurance and deemed “necessary” by our insurance, navigating new Covid protocols, getting tested at least once a week due to different appointments or, at certain points, possibly coming in contact with people who had Covid. At some point in this uncontrolled free fall my childhood dog, my sweet 14 year old giant Pomeranian Audrey died. I was an absolute wreck.

My stress manifested itself in my hair thinning out and a loss of appetite. The first week of July, I wrote in my journal that I realized I hadn’t had anything to eat except a few crackers and water the entire week. Everyone told me I looked great, but I was weak, mentally and physically. I had to keep pushing on because there was no other option. I was also feeling intense moments of guilt. How could I be feeling so shitty when Jonathan was the one who was going through this? I didn’t give myself any room to wallow in my own self pity and there wasn’t anytime to. Life moved whether or not this was happening, and the way that life was moving was unlike anything I had ever experienced before. Hit at all angles, I was hurting deeply, but I sucked it up.  

Eventually, Jonathan decided to go with the retroperitoneal lymph node dissection to remove the cancerous lymph node. The hope was that the cancer had spread to a single lymph node, but the doctors would remove about 40 to confirm there wasn’t any further spread. By opting to go down this road, we hoped to save our chances to naturally conceive one day. Each option, whether the RPLND or chemo, posed it’s own risk for the future of having a family. This choice was something that weighed on us heavily, but a decision had to be made. My family was incredible in making sure every single moment of Jonathan’s surgery day was planned. From my amazing parents giving us a ride to the hospital at 5am, to my incredible sister having a full playlist of shows for me to watch while I waited at her house for his surgery to be over. My phenomenal brother in law accompanied me to the hospital to visit Jonathan after his surgery, waited outside until I was done and accompanied me back to their house, where I spent the night. I was surrounded by love and help and I’m grateful. I was on autopilot that day with my anxiety driving a car. 

The following day my wonderful cousin and her husband drove me to the hospital to pick my love up. Even though I fell asleep at 8pm the night before and was somehow still tired, my adrenaline was keeping me moving. Jonathan looked so much better than he did the day before. He was covered in scars that he referred to as his bullet wounds, but all of his color had returned to his face. The doctor came in to talk to us, but I had to excuse myself for a work call. The call was hard to focus on, all I could think about was the information I was missing yet again. Because of Covid, it was a rare occasion for me to be able to directly speak to a doctor and I had waited for so long to be able to do so. As the call wrapped up I heard the doctor say “You have tough recovery ahead so you need to take it easy, but we’ll touch base when we have your results.” The doctor somehow snuck out of the room by the time I returned. “What did they say?” I asked Jonathan and in typical fashion, he just shrugged. 

Not being able to communicate with Jonathan’s team was frustrating. Throughout this, Jonathan had to advocate for himself while hearing scary news all at once. Sometimes, hearing all of that would leave him shaken and not able to really process what was said. When he would come home and try to report back, he had a hard time being able to give me the full assessment. I would get fragments of information. On several occasions we requested to speak to the doctors again over the phone so we could ask new questions together. For one reason or another, those requests were ignored and he would have to wait until his appointment where the whole cycle would repeat itself. 

Those sweet summer days of recovery were pretty quiet too. Jonathan’s diet had to change pretty drastically so that his body could recover. For a full month we had to drop most fats and stick to specific proteins. We would take short quiet walks with Honey around and enjoy the warm air. These walks started slow at first and then eventually grew faster and sometimes even longer. While we waited for the results of the biopsied lymph nodes we were hopeful. Maybe this was it and things would start to turn around again. Maybe we could start doing more things outside with friends. When my birthday came, Jonathan was acting and feeling like himself again. It felt like things were falling into place and with the city buzzing again, we thought life would maybe return back to normal.