“How has this changed you?” everybody asks
I often get asked how cancer has changed me. An easier question would be how it hasn’t changed me. In the end, after everything settled, nearly two years later the best way I can describe it is to say that it gave me this calm clarity. I had a friend who had terrible eyesight from a very young age but didn’t know it until she was tested in fourth grade. When she got home after getting glasses for the first time she turned to her mom and said “our house is brick?” She had always thought it was painted red. This is the way I feel after cancer. The experience starkly clarified what was important and what was not. I imagine all of my life experiences as these smooth rocks piled up in a large basket. After cancer I had to sit down, pick up each rock, and reevaluate each one of those experiences with this new clarity. Many of them looked very different under the new lens, and after I was done sorting I had an entirely new foundation.
This clarity was not instantaneous, at least not the right kind of clarity. I expected an instant change, as if the heavens would open up and everything would make sense. I felt like I should change and wondered why it wasn’t happening quickly. It took nearly 18 months to arrive at an understanding of what this experience was telling me. Immediately after treatment I went through a period of extreme life optimization. I needed to relish every minute. I would leave work at 5pm regardless of what was going on. I would rarely leave Julie’s side. I fell further and further behind at work. I found I wasn’t doing a very good job at work, and so I threw myself into the job, because after all, I wasn’t going to be around forever so I might as well do good work. This pendulum swung back and forth a few times and in the end, after a long journey, I settled in a good place. It took John Ruark, a really amazing psychiatrist who specializes in cancer, a very patient wife who specializes in determination, and a good amount of time to get me there.
I think in many ways I just do a better job existing now. I am engaged in everything I do. I have good times, I have bad times. I get bored, I get excited. But in each of these states I really truly exist. Before cancer I would get anxious when I was bored and would try to do anything to change it. I had this unquenchable need to always be doing something. Now “bored” has taken on a different character. Pema Chodron, one of the first female Buddhist monks, wrote about this in her book When Things Fall Apart. She tells us to explore how we feel when things are bad. Her book helped clarify a lot of how I was feeling. A great analogy for me is hunger. When I am really hungry it has the tendency to take over my every thought. I feel this desperate need to eat and get rid of the feeling. If instead of letting this feeling pull me into this blind drive to find food, I explore the feeling I quickly realize it is not as desperate as it feels and it will pass. If you can learn to be comfortable and poised in hunger, you quickly recognize it as temporary feeling that will pass in time. Sadly all good things come to an end. At the same time, all bad things come to an end. I think if you can live your life like this you will be content. Everything that happens to you is just a new path, a new direction. Nothing more, nothing less.
One of the most remarkable changes that resulted from my experience is that I feel invincible. I know that seems odd to go through a period of such extreme vulnerability and frailty and feel invincible. What I really mean by this is that nothing can hurt me as long as I have my health and my family and friends are healthy. Everything else seems so trivial. It made everything else seem like a game. Certainly it is a game I want to do well in but in the end it is just a game.
I found there were a wide range of reactions from friends and family. I found a lot of them disappointing and some of them absolutely amazing. Overall they were very clarifying points in our friendships. Most people didn’t want to deal with it. Worse, they will want you to be over it soon. Many of them were looking to send flowers and be done with it not recognizing it is a long fight and even after the fight is over there is a long, long period of healing. I don’t want to belittle gifts – they are very thoughtful and important, but it was hard to deal with people who didn’t understand that there wasn’t a quick solution. It just isn’t going to be over.
People were also afraid to bring it up. I always found this hilarious. You can tell who these people are. It always made me chuckle to myself when dealing with them. I always pictured my response if they got the courage to bring it up, “Hold on one sec. I need to throw up the plain toast I had for breakfast. OK. I’m back. What did you say? Cancer? Great. Thanks for bringing it up. I had totally forgotten I had cancer and you just reminded me. This sucks. Well, my entire day is ruined.”
Generally we were swamped with offers to help. This was really nice to hear but in the end I felt like I needed an entire management staff to manage requests to help. If I had to do it over again I would have been more direct and simply said, “If there is something you can do, please do it. I am too tired and stressed to think about what I might need. Otherwise, thanks for your offer.” In the end it was the people who showed up with the tray of lasagna on a Wednesday afternoon allowing us to not think about dinner for a few days that really impacted our lives. It was the little things without any prompting that meant the most. My sister wordlessly flew out and spent two weeks with me just talking. She helped me deconstruct different life experiences and most of all just listened.
My wife was and is amazing. She took my depression in stride. She put up with hours and hours of fruitless conversation about how horrible the world looked. She propped me up when I collapsed. She became my own personal researcher and knew everything about the disease. I don’t think you could ask for somebody more amazing at your side. Sometimes I watch her breathe after she has fallen asleep. Each breath is like a miracle to me. I love her so much my soul aches and I promise myself I will never waste another moment with her.
I still cry when I hear a cancer patient’s story. Jul volunteers at the cancer center which is something I couldn’t do because I would constantly break down. Their stories are too real and too close. I know what they are going through in vivid detail and that is impossible to shoulder and I’m not sure if this will change. I also notice when I hear about somebody who had cancer I always want to know how they are doing now. As if somehow them surviving increases my chances.
For the first two years my monitoring consisted of running tests every three months to look for tumor markers, chest tumors, and spreading to the lymph nodes. For three years after that we run the tests every six months. They tell me there is a very small chance that it will come back, but there was an even smaller chance I would get it in the first place so how is that supposed to make me feel better? There is probably a better chance I would get hit by a car, but I don’t go stand in a road every three months just to check if it is going to happen. The week I wait for the test results is a very uncomfortable and dark time. And my doctor is still regularly 45 minutes late.
In his book Lance Armstrong says if he was given the choice between getting cancer and winning the Tour de France he would choose cancer. This sounded insane to me when I first read his book. After surviving cancer I completely understand his choice. I have never felt more alive then I do now. I have never felt so complete. I have never been so accepting of death. I have never loved and appreciated my family and friends so much. I often will press my thumb, middle finger, and index finger together and feel the blood pumping, feel my skin, feel the life in my body and just appreciate my existence.
It was the worst time of my life. I have scars on my abdomen. I have tattoo dots on my chest. I always have this nagging fear it will come back. I desperately want children and am still struggling to have them. I have deep mental scars that are still healing. But all of this pain has made every minute truly precious. It has made three little words really mean something like they never did before.
I am alive.