Survivor Spotlight: Kevin Hall
I’ve been very lucky. And maybe a little unlucky. It all depends on perspective, which depends on when in my story you peek in.
My left testicle swelled. I ignored it. I knew nothing about testicular cancer at the time. Had literally never heard the two words in the same sentence, way back in 1989. I suppose I simply figured I had some weird case of unilateral college blueballs. It was, theoretically, possible. This hypothesis worked for a few days. Until my left testicle hemorrhaged. Which really hurt.
University infirmary to hospital to surgery to “one down, one to go” all within twenty four hours.
The scar was not very big. On my skin. Just a little two-inch horizontal line down there. However, inside, where my selves try to protect me from spiritual pain, where those selves made up stories about why things happened and whether they might ever happen again, I was torn apart. I was terrified.
Soon after my surgery, people gave me books. The books were supposed to help me put it all in a broader, wiser, more optimistic perspective. However, reading them really really really pissed me off. Their gist was: “My cancer was a gift. It caused me to face human frailty, to face mortality, to decide what was really important to me in this life. I wouldn’t trade it for anything”.
I HATED hearing that, at the time. It didn’t give me any strength, it just made me mad. I was twenty years old, and I hadn’t done anything wrong. I didn’t deserve anything that heavy in my life. I was just trying to, you know, make it through college and have some fun along the way. After getting pissed off and deciding that reading books by optimistic cancer survivors was stupid, I basically non-evented the whole thing. Compartmentalized it right out of my life. Every once in a while, when I had to adjust my junk because my prosthetic left nut was bigger than my real right one, I thought about it for half a second, told myself huh, and got back to whatever Things I was Doing.
Jumping back to immediately after the surgery, it was recommended that I do radiation treatment. I tested “all clear”, but the thinking then was that the smart thing was to do the radiation anyway.
I didn’t want to. I wanted to go back to school and get on with life. So, I promised to get blood tested monthly, and get a CAT scan every three months, to give us every chance of catching anything which had managed to hide. They told me if I made it two years there was a good chance I was in truly in the clear.
Two years came. My blood levels shot through the roof. Almost to the day, as if some evil part of me was just waiting until we celebrated the twenty fourth month, before announcing “BOO! You still have cancer!!”
I had a retroperitoneal lymph node dissection (RPLND). This is where it got interesting. Nothing showed up in the removed lymph nodes. They were all clean, all benign.
I had cancer somewhere (or I was pregnant), but not where it was supposed to be. Somewhere else. There was a whole lot of head scratching. Until the other testicle hemorrhaged. At this point I had short horizontal scar, and a very long vertical one (sternum to just above the star of my man show). The good thing about having the other testicle hemorrhage was I could get a matching horizontal scar on my right side, and a matching prosthesis too. Also, my surgical history rolls like poetry off the tongue: bilateral radical orchiectomy. Sounds lovely.
The bad thing about having my right testicle removed was everything changed forever.
I decided not to bank sperm beforehand. I stand by this decision (it was very complicated and belongs in another story), but in the same breath I urge people to do it, to bank some while they can. “You can always not use it” is the obvious, simple logic, and it is sound logic indeed.
The other thing that changed with my body is it no longer made testosterone. I started taking a shot every other week in my butt. I started having two mood cycles a month, which gave me bit of insight into some peoples’ monthly swings. I take the shot weekly now, and have learned to fill in the valleys and knock off the peaks just a bit. That said, my wife Amanda never has to wonder whether it’s “day after shot day”. I’m randier than an eighteen year old on spring break, for a day or two.
Amanda and I have three beautiful and curious professional patience testers, two boys and a girl currently aged 11, 9, and 8. And I am so grateful, and even a little proud.
So back to the cancer and the whole “it was a gift” thing. It takes time to get there, but it’s true. It’s really hard to simulate facing your own mortality head on. When you’re staring straight at the terror of what can so easily veer into a terminal illness, everything slows way down and you can’t help but ask yourself what is important to you.
It’s not a secret. Hearing the words is a great start so I’ll say them here. Family, friends, and Love are important. Authenticity is important. Most of the other things recede and shush right down once you’re invited to know, to really know, that you may just return to dust a little ahead of the schedule you had planned for yourself.
If you have recently been diagnosed with testicular cancer, it’s not going to be easy and it’s not going to be fun. But I promise, in a way that should probably make you a little mad, that it will be worth it, one day.
In recognition of Testicular Cancer Awareness Month, Kevin has made the Kindle version of his book Black Sails White Rabbits available for free on April 4, 5 & 6th, 2016.
"This is a compelling and extraordinary book about a life of extremes. Of mental pain and sporting triumph, of acute despair and a determination to achieve what others take for granted: a settled family life with a wife and children who love him. It's a jagged ride, funny, romantic and agonizing. And like all the best art, it's honesty is cathartic."
- Philip Delves Broughton, New York Times bestselling author of Ahead of the Curve:Two Years at Harvard Business School and The Art of the Sale
More About Kevin Hall
Kevin A. Hall is an Ivy League graduate of Brown University, where he earned a bachelor’s degree in mathematics and French literature. Despite being diagnosed with bipolar disorder in 1989, he went on to become a world-champion Olympic sailor, as well as racing navigator for Emirates Team New Zealand in the 2007 America’s Cup match. A two-time testicular cancer survivor, Hall has spent a successful 25 years as a racing navigator, speed testing manager, and sailing performance and racing instruments expert. A brief version of his story was featured in Joel and Ian Gold’s book Suspicious Minds: How Culture Shapes Madness, as the only non-anonymous case study of a patient with Truman Show delusion. Hall's first book is the memoir Black Sails White Rabbits; Cancer Was the Easy Part (December 5, 2015). He currently lives in Auckland, New Zealand with his wife and their three children. For more details, please visit www.kevinahall.com