Who do you tell you have cancer?
I have been fighting cancer for over 20 years and until the writing of this book, other than close friends and neighbors (minus the piece in Houston on NBC) did not know I was battling cancer. This seems a bit counterintuitive, as it feels as if you would want to have everyone supporting you in your battle. But for me, it was different. I did not want cancer to define how people viewed me. In fact, I worked hard to keep it under wraps, asking those who knew about it not to share it with others. In fact, until 3/2/22, you would find only one single post on social media, about my cancer, from me, friends, or family. My reasons, right or wrong, were done for the following reasons:
I did not want everyone asking my wife and kids about my cancer. I wanted to protect them from it. Remember, my journey started when they were 4 and 7 –continuing today. So they went through elementary school, middle school, high school and college/university and now their work careers while I am going through it. I wanted them to be with their friends and not have to talk about their dad.
I wanted to protect my work career from it. This is a can of worms from a career point, but I was in the peak of my earning years and did not want work impacted by it. I wanted to be known for the quality and impact of my work, with no asterisk that said he did it while battling cancer.
I was protecting myself from having to talk about it often. A great way to avoid the questions about cancer was for people not to know about it in the first place.
There is no right or wrong
It is part of advocating for yourself in your journey, but if you are a cancer patient, YOU should make the decision how public you want your battle to become. You need to think about it early. Then make a decision about it - and share that with those you know. If you want it to be private and it shows up on Facebook from a friend, well, you need to get ahead of it to prevent it.
My advice. When in doubt, limit communication early in the battle. Set ground rules upfront with family and friends about it. Then, as your journey progresses, you can decide how open you want to be about it. There could be exceptions, for example, if your hair falls out. But if you want to keep it private if that happens, then wearing hats, wigs, scarfs, could prevent the attention from being on you.
The decision to write Up For the Fight was a difficult one. By writing it, I will now be forced to talk about it, write more about it (like this blog), and be known as a guy who wrote a book on cancer. But, for me, the tradeoffs will be worth it. Even though it triggers me in emotional ways to write and talk about it –the opportunity for the book and the writing and talking to help others in their journey, will counterbalance the angst. As an example of the challenge of the book, as I was reviewing edits for the book, my heart rate doubled instantly. I had the feeling in my throat that happens when the heart is racing. I hollered to my wife, who was downstairs. I told her my heart rate has skyrocketed and I was not feeling well. As she came upstairs to get me to lie down and take my blood pressure, she asked me if I had been working on the book. “Yes.” In fact, the heart rate spiked as I was reading the piece about my initial infusion reaction in 2008. It highlighted the emotional challenges I face now with the publishing of the book. I am counting on being able to deal with the questions without getting too triggered, but expect on occasion, I will need to take a deep breath and step away from some conversations about it. And I am hopeful, no one will ask me about my infusion reactions. Or how did it feel the first time I thought hard about dying. Or what is it like to be isolated from people for 18 months while going through immune system depleting treatment.
My racing heart rate is great example, why you, too, should be cautious about how many people know about your cancer, until you feel ready to be able to handle the conversations without it impacting you very much. The mental and emotional piece is quite challenging, so protect yourself the best you can, by being deliberate who knows about your battle.