A lawyer who’s passionate about animal rescue, Steve, age 55, has dealt with cancer twice: a bout with testicular cancer in the 1990s and a recent battle with stage 4 colon cancer.
In 1990, during a very brief marriage, I had testicular cancer. I felt pain but ignored it for a while. Eventually it got too bad and I went to the urologist. Two days later I had surgery to remove one of my testicles, then started radiation—which was far worse than any chemo. I wanted to die; my entire stomach was a field of radiation. I would throw up all night, so violently that I didn’t think I could survive. At the time, doctors told me I was predisposed to another cancer—I think because of the radiation. I knew I would get it but assumed it would be much later in life. I’ve always been keeping an eye on the clock because I thought something would happen.
Then, a routine colonoscopy showed possible pre-cancerous polyps. During a second procedure the doctor saw something outside the colon wall and took a sample from near where my appendix had been removed. Two days later I got the call. When the doctor calls, you know it’s not good. Sure enough, it was cancer. The surgery was supposed to remove a section of the colon. Based on scans, they were optimistic they could get everything, but the hospital stay was horrific. A three-day stay turned into 28. They had to remove an obstruction in a second surgery. When I got home, I still had an open wound to be managed, which delayed my starting chemo for about four weeks. They graded it as stage 4 because the cells were just outside the colon wall, but fairly localized.
Prepared for the Worst
When I was diagnosed, I knew nothing about colon cancer and wondered if it was going to kill me. I felt sorry for myself. Immediately, I feared my of mortality, this is the beginning of the end, and I started thinking about how I needed to wrap things up, like figuring out who was going to take care of my six dogs.
With my first cancer, I also went through this, which destroyed my marriage. I pushed my wife away and didn’t want to accept anyone’s support. I didn’t want to hear anyone say “everything is going to be alright.” That’s the worst thing you can say to a cancer patient. Once I got into the treatment mode and was talking with doctors I got a little better. I didn’t have a positive attitude; it was more of a no-choice attitude. What was the alternative? So I went through the treatments and did what I was told.
I was prepared for the absolute worst. One guy told me horror stories about chemo and that he needed medical marijuana, which got me worried. I ultimately didn’t have the same side effects and I found that to be an interesting lesson: everybody reacts to this very differently. One chemo drug caused cold sensitivity, which last for about a week after each session. I also had some neuropathy and limited fatigue. Another drug caused dry skin; at one point skin on my fingers opened and were bleeding. It felt like a thousand paper cuts, which lasted about two weeks. I worried about mouth issues, dry mouth. I had no desire to drink water and was constantly rinsing or using sugarless gum and lemon drops. Overall, my side effects were minor annoyances. I never missed work other than for the chemo sessions.
The Power of a Hug
I’ve never been good at letting anybody in. I love helping others but don’t like others helping me. It’s hard for me to accept help, but when I was in the hospital, my siblings took shifts staying with me—they all live elsewhere, all married with children—I wouldn’t have made it without them. I never forgot to say thank you for even the stupidest things, like putting my socks on or helping me out of bed.
When things get tough, I can accept help from family, but find it harder from friends, even though I’ve known some for 30 years. I didn’t allow visitors, didn’t feel good, didn’t want to entertain, and didn’t want anyone to see me like that. Afterwards, at home, I would rather be alone. I’m hardwired to be independent and get everything for myself, not wait for gratification from other people.
I learned that if I wanted answers, I’d ask the nurses instead of the doctors. They were my care givers and never steered me wrong. They gave me good tips for dealing with the side effects from chemo. Nurses really see everything up close. Weirdly, I enjoy going to the infusion center, it’s the nicest, most wonderful place and I get treated like royalty. I feel at home when there. I like to go alone, but friends have also come to the sessions with me. It’s unbelievably generous of them to take time away from their busy schedules. I love telling people how much they mean to me. I grew up in a household without hugs, but now I love hugging people and telling them I love them.
I’m in recovery for gambling and have learned that you can only control yourself. We are supposed to accept help. I understand that it’s gratifying to others when I accept help, but it’s been the one part of the program I never embraced. Everybody has their own shit to deal with on a daily basis; no one is waking up thinking, “I wonder how Steve is doing,” so I owe friends the respect of thanking them for checking on me. I do appreciate that.
I think about the chemo and the port, but not the cancer in my body. I’m terrified of cancer coming back when I’m older—I see that I’m one of the younger patients in the infusion center—and fear not having the strength to fight this when I’m 70 or 80 and become a burden. I know I’m going to be alone, I don’t date, don’t have time for that—that’s who I am. I never thought about it before, but it bothers me to think about it now.
Solace in the Daily Routine
For the longest time I wanted to be blissfully ignorant, but I finally had a conversation with my oncologist about the end game. What are we doing this for? Am I going to be completely cured? He didn’t want to offer any guarantees, but said I’m responding well according to the labs. So I’m just taking it one day at a time. All I wanted was just to be told the truth—good or bad—just don’t sugar coat anything. If it is bad, I can handle it. Focusing on the day-to-day things has helped me.
An upcoming PET scan will give an idea of what’s going on, but there’s currently no reason to believe that anything’s spread. Emotionally, I’m in a good place, going about my business and doing daily chores. It inspires other people that I can do these things. That to me is the light at the end of the tunnel: getting back to a normal routine and being done with the chemo stuff.
Getting Over Roadblocks
The best thing you can do to support someone with cancer is be there and see what their needs are. The rah-rah bullshit, people don’t want to hear it. You don’t want to hear “you’re going to be fine, it will be ok.” Someone who has never been through it shouldn’t offer platitudes.
I remember distinctly making so many proclamations after my first cancer, I was going to have this new life and do things differently. That lasted a short time and then I went back to who I was. I don’t even remember all those proclamations. This time, I don’t anticipate being a different person and am not making any proclamations. I expect to go back to living my life and just view this as a roadblock that I tackled and got over.
January 2019 Update
I’ve been done with treatment since February 2018. The dry mouth went completely away. Unfortunately, the neuropathy in my feet has not. It sucks. If I sit too long, my feet get completely numb and it takes a few minutes of walking before I stop looking like a 90-year-old man, especially when it’s cold outside. The two biggest side effects of chemo were dry mouth and neuropathy. This sounds dramatic, but if the dry mouth were permanent, I probably would have killed myself. Nothing depressed me more than that. Everything changed with my mouth, and I had to concentrate every minute of the day on it because the feeling was so bad. Between the two, I knew I could live with the neuropathy.
Had I only had stage 3 colon cancer, I could have stopped my regimen after 3 months. But, because it was stage 4, I had the do the 6-month routine, with a virtual guarantee of neuropathy. It wasn’t horrible during treatment, but it really came on towards the end and after. One downside of the dry mouth going away is that I discovered my love of food again, and quickly regained the roughly 40 pounds I had lost during chemo.
I’ve had three CT Scans since I stopped treatment, with another one scheduled for this month. All have been negative. I also had a colonoscopy last week, with the same Gastroenterologist who did the one in 2017. I was able to tell him how much I appreciated that he saved my life by going above and beyond what some Gastros may have done when he saw something that didn’t look right. He told me he will never forget my case because it was so unusual for him too. Thankfully, the results of this test were negative.
As if I hadn’t had enough surgeries, I developed a hernia because of the two surgeries for my colon cancer. In July 2018, I had surgery to remove the hernia and spent 5 days in the hospital and several weeks at home. Boy, that was a pretty painful experience, but I actually have a semblance of a belly button again.
Another reminder of my colon cancer experience, besides the continuing scans and neuropathy, is my chest port. It still is in me and will be for years until my doc thinks it’s safe to remove. It is a not-so-subtle reminder that I have a foreign body attached to me. I can’t go a day without rubbing or acknowledging I’m not quite finished yet. For the most part though, 2017 seems like a really long time ago. Despite keeping a daily log for the entire time from surgery to the end of chemo, I have forgotten more than I remember.