Diaries of a First-Time Caregiver: This is What We Do Now

“This is what we do now.” It’s been my mantra in my adult life when situations that were unfamiliar, unavoidably became familiar.

A few months ago, I was touring musician in a 4-piece rock band. I was driving four of my closest friends around the northwest in a big white cargo van named Gwen with raptors painted on the sides. We had shows booked all the way through September. I was also a year and half deep into my first startup company that I had created to help musicians stay financially afloat while on the road. When I wasn’t doing that, I was working part-time at one of the busiest fine dining sushi restaurants in downtown Seattle.

I was getting ready for a really exciting year. My app was being funded and I had a good friend who was helping me with the design. My boyfriend and I were preparing for a ten day motorcycle trip down the west coast before the summer’s end. I was finally with someone that I would be beyond excited to bring home, especially as my date for my little sister’s wedding this coming winter. At that moment, my mom and I were finally together on the road for a mother/daughter road trip that we had been dreaming up for months.

My mother and I had just arrived in Bend, OR. Our first stop was pedicures, obviously. We had spent a good part of the day driving from Portland eating popcorn, and talking about what the hell I was going to do with my life and how I may or may not have depression. I had been to Bend a few times before and was really excited to show my mom what the Pacific northwest had to offer. While we were waiting for the nail polish to dry, I got a call from my boyfriend, Joey. He had went to the doctor earlier to get a CT scan for a mass that we had found below his ribs while laying in bed a few weeks prior. “They think it’s a cyst on my pancreas. I’m going to need surgery. That’s all I really know”.  

I was up all night crying at the thought that this mass could be something more serious and at 4am my mom got out of bed and walked around downtown Bend with me until my panic attack subsided. In the morning, we turned around and went back to Seattle so I could be there for Joey.

After more tests and scans, the doctors had concluded that Joey’s cyst was actually a grapefruit sized tumor that was growing on the tail of his pancreas and feeding off the veins to his spleen. It took weeks for us to find out that it was cancer. He called me while I was at my house checking my mail when he got the news and I drove through two red lights and made it to his house in about five minutes to see him. What I knew about pancreatic cancer was that it was fatal and that at best he would have 2-3 years to live. When I got there, he explained that he had a extremely rare type of pancreatic cancer called Acinar Cell Carcinoma and together we discovered that it was actually a slower growing form of cancer than the usual Adenocarcinoma.

For a minute, we were relieved. Maybe they could resect it and he would be totally fine! The more that we read, the less we knew. Apparently, there were not enough cases of Acinar Cell Carcinoma for anyone to tell us anything concrete about it. Everything was a guessing game. We knew the best chance he had was surgery but even that came with a terrifying pile of potential complications. According to his surgeon, there were a ton of things that could potentially go wrong with a distal pancreatectomy and splenectomy. He could become a diabetic, the pancreas could leak fluid and cause infection, the lack of his spleen could leave him susceptible to other infections, or they could simply open him up and find that there’s nothing they could do for him.

Joey and I had almost been dating for one year at this point, and today I’m a full time caregiver.

“This is what we do now.”

Next month Sammy continues her story with what happened during Joey’s surgery and the reality of being far from relatives during the diagnostic process. Learn more about Sammy and Joey on their GoFundMe page here.