This is the follow-up to LIVING AND DYING WITH CANCER: Treatment, the “good fight” and accepting help, published last month, with more monthly installments to come.
In September 2020, two months after completing radiation and chemo treatment, I still felt bad. I still couldn’t eat, and I still felt extremely sorry for myself. I would sit on the couch all day, just trying to keep my mind off of what I was thinking and feeling.
When I was told I had cancer in March 2020, I’d been relieved, and after finding out I was going to live, I was disappointed. In September 2020, I was demoralized.
My wife had been home for six months, but we still had this sword hanging over our heads. It had been a year since we’d moved Lily’s mother into assisted living. We’d been paying for that and the mortgage on her house for more than a year now, because my wife had to come home and take care of me. One of the things that scared me the most was knowing we didn’t have enough money to retire, and now it seemed that money was just being poured down the drain.
I sat on the couch, my future right in front of me. I was hoping I could retire at 68, but that plan went right out the window. Lily and I didn’t have children. There was no one who was going to pay for our assisted living. There was no one who was going to take care of us. The thought of “getting better” and having to go back to the grind of just trying to survive made me sick.
I didn’t feel better. I was still losing weight. I struggled to get any solid food into my body, and the worst thing was that, like Cinderella, I was going to turn into a pumpkin in October when my six months of short-term disability were over. I knew we had to go back to St. Louis and clean out the house so we could sell it, and hopefully get some of our money back. The only thing that gave me hope was that we had a potential buyer. The neighbours had wanted to buy the house and they were just waiting for us to get it cleaned out.
A slight upswing
I think it was October when I started to feel a little better, but don’t confuse feeling better with feeling good. Feeling better was that I could at least tolerate a couple of protein shakes. Weeks before, I’d lost my sense of taste. Everything tasted like cardboard. I kept trying to eat solid food, but it sucks to eat four of five bites of food just to throw it up again. It makes it harder to keep trying, but I’m getting off-topic.
I don’t mention this so you feel sorry for me or think I’m tough. I’m not. I knew I had to go back to work on October 29th. I knew we had to fly back to St. Louis and clean out the house. What I didn’t know was if I could be on a flight for four hours and not throw up, but there was no way Lily was going to go back to St. Louis by herself.
Lily realized this before I did. We’d been back together for six months, under the worst of circumstances, but it was so good to be together. We’d both been suffering for a long time, and we were suffering alone. I don’t want to speak for Lily, but I don’t like asking for help. I’m the youngest of four siblings in a fairly dysfunctional family. I’d essentially been left to my own devices for all my life. Having to ask someone for help, or more accurately, releasing control and letting someone else help you, was a foreign concept for me. I hate not being in control.
Lily and I spent a lot of time together during my recovery. Even though my treatment was over, I’d still been going to UCSF two to three times a week for hydration treatment. Not only could I not eat, but it was also difficult for me to drink liquids. I’d get one to two litres of saline solution intravenously, which would take about three hours. Lily would sit in the car in the parking garage and wait for me. We didn’t talk a lot about what lay ahead for us. It was just so good to be together. We swore to ourselves that we would never, ever let ourselves be separated again.
So, in October we still didn’t know if the treatment had worked. I was scheduled to be scanned on October 19 and get the results on the 20th, and we were going to fly to St. Louis on the 21st. I got scanned, and as I’ve learned over and over and over again, you never get a clear picture of what’s happening. The doctors couldn’t tell me if I was “cured.” All they could say is that it looked as they expected, there was nothing to be concerned about, and they’d see me in three months for another scan. We flew to St. Louis the next day.
St. Louis during the pandemic
In case you’ve forgotten, we were in the middle of a pandemic, or a fake pandemic; take your pick, because for me, it didn’t matter. After treatment, my immune system was compromised. Just getting a cold could be bad for me. But we got a lucky break. Not a lot of people were flying during this time, and Southwest Airlines had extended their policy of leaving the middle seats open. We were able to have a row to ourselves. Lucky.
The plan was to go to St. Louis, clean out the house, sell it, and drive back to California with whatever keepsakes we could. The only question was, “How long we would be there?” Lily said we’d be back by Christmas. I had my doubts.
My wife is a strong woman. I didn’t realize just how strong she was until we were in St. Louis. When we got back to St. Louis, we found out we weren’t the only ones affected by the pandemic. The neighbours who were planning on buying the house had to back out. They owned a small business that had been hit hard, like so many others. We were crushed, but not surprised. That’s how we thought our luck was going. It seemed to us that since September of 2018, we’d had nothing but bad luck.
So when we found out that we no longer had a buyer, I was devasted. No way were we going to be home by Christmas. Who was buying houses during a pandemic? The difference between real estate sales in October 2020 and October 2021 was like night and day. I wondered if we’d ever make it home. But Lily never faltered. There was no way Lilly was going to spend a third Christmas in St. Louis. Spoiler alert—she was right!
It took us a few days to settle in, but Lily hit the ground running. I went back to work remotely. Another big lucky break was having a job in which I could work remotely. I was lucky to work with caring and understanding people. I was allowed to go back to my Salesforce training without having to worry about deadlines or deliverables, so I’d sit in the second-floor office and study.
Meanwhile, Lily worked on going through years of memories and financial records. She tried to set up an estate sale (good luck, during a pandemic!) and was still trying to take care of me. A week later, it was already November. I’d start work at six in the morning and try to help when I was done. There was just so much to do. After the second week back at work, I realized that there was no way we were going to get back home by Christmas if I didn’t help Lily more. I took the last three weeks of vacation I’d been saving for a trip I was hoping to take with my brother to Australia.
It had been getting “easier” to eat things, but I felt like a pregnant woman. I’d have to crave things in order to eat them, and even then, it was hard to have any more than a few bites, but my wife kept making me try. She kept trying to find things that I could eat. One day when we were out buying something for the house, we passed a White Castle fast-food restaurant. You know the one with the little tiny slider-like “hamburgers”? It had always been my self-indulgent treat to eat White Castle when I was in St. Louis.
We drove through and got a couple of the small burgers. I devoured the first one, and then I ate the second one. I didn’t have to force them down. It was the first time I enjoyed eating solid food in six months, but what it did for me was give me hope. And as Andy Dufresne said in the movie The Shawshank Redemption, “Hope is a good thing, maybe the best of things, and no good thing ever dies.”
I’d been living without hope for a very, very long time. It’s hard to pinpoint when I lost hope, but like so many things I’ve talked about so far, it was gradual. I didn’t realize it was happening.
Religion and philosophy
Side note: If you haven’t noticed so far, I like to reference quotes from movies and songs. It’s because I love a good line. I’ve recently found myself basing my philosophy of life on fragments of things I’ve seen or heard throughout my life.
I was born into a Catholic household. I was baptized and received first communion, but I was never confirmed. When you’re confirmed, you get to pick a saint’s name to be your Patron Saint. My brother and sisters all have four names. First, Middle, Confirmation Name and Last Name. I only have three.
My mother felt it was one of her greatest failures that I wasn’t confirmed. I even have an aunt who was a cloistered Dominican nun. When I was 18, I dated a Baptist girl. I say “girl,” because I was just a boy. And because I was a boy, I pretty much did whatever she asked. So I went with her to Baptist church and thought I was getting closer to God. I told my mother, and she wasn’t happy. I’d stopped going to church with my parents years earlier.
One day when I came home, my mother told me my aunt was on the phone. I was so happy to share my growing relationship with God. This is what my aunt said: “Honey that’s good, but you were born into a Catholic family. God meant for you to be Catholic.” All I heard was, “If god had meant for man to fly, he would’ve had wings.” It was one of the defining moments of my life. It was the same God I was praying to, right? I may be wrong on this, but don’t Catholics and Baptists believe in the same God? What freaking difference does it make, how you get closer to them? It made me sick.
Not long after that, I was attending a service in the Baptist Church. Near the end of the service, they’d ask if newcomers wanted to come up and be Baptized. My new girlfriend nudged me and said, “Are you ready to be Baptized?” I told her I’d already been Baptized when I was a baby. She said, “That doesn’t really count.”
It was at this point that I decided I’d had enough of religion. It seemed to me that it was filled with nothing but hypocrites. Wasn’t it good enough that I wanted a relationship with God? I had to do it your way? F@$# that. So I turned my back on God, or more accurately, I turned my back on that part of myself. I stopped looking for God. But once again, I’ve gotten off-topic.
Gaining hope
So Lily and I were sitting in a car eating, and for the first time in a long time, I felt hope. I tasted something, and it tasted good. After months of not being able to eat, I thought that was my future. The doctors can’t promise when your taste will return, or even if it will return.
My taste buds aren’t the same. I can’t eat some of the foods I used to love, but I can’t explain how truly grateful I am to have what I have, and the gift I was given that day was hope.
Andy was right. Hope is a good thing. It may be even more important than Love, because what is Love, without hope? And I was lucky enough to find hope in the parking lot of a White Castle. What I didn’t know was that Love was right around the corner.
This is the third in a series of monthly installments about the author’s journey through illness, so check back in December for Part Four.
image 1: Eden, Janine and Jim; all other images: Depositphotos
