“ Be your own advocate. Don’t be afraid to put yourself out there and reach out to people and let them know what you’re going through, as scary as it may seem.
June is Men’s Health Awareness month! Stephen Heaviside is a Testicular Cancer mAss Kicker from California! He is a musician in Yorba Linda, CA and very involved in adolescent and young adult cancer advocacy through the organizations: Stupid Cancer, the Testicular Cancer Foundation, the Leukemia and Lymphoma Society, and Cancer Fight club. We met him in Denver a couple months ago and are honored to feature him on our website this week.
mK: Thanks again for doing this Stephen. What/ when was your diagnosis? How did you find out about your diagnosis?
SH: I was diagnosed with testicular cancer in December 2013. I had suffered an injury to my left testicle. When I went to a urologist to get it checked out, he confirmed that I had a serious testicular injury. But then he also said that his main concern was that it looked like I may have a cancerous tumor in there.
The staging of testicular cancer is somewhat complicated. My medical team never really said out loud “ok, you’re THIS stage”. Based on a few different sources and the literature I’ve read, I’m considered stage 2 or 3. My markers were quite high and it had spread to my para-aortic lymph nodes. The nodes were too big to do the RPLND surgery. So things ended up being way more serious than I could have anticipated.
I had an orchiectomy (which is fancy medical talk for “they removed my left testicle”) on New Years’ Eve, December 31, 2013. I then had 4 cycles of BEP chemo in the spring of 2014. It’s usually 3 cycles of BEP chemo for testicular cancer guys, but my cancer was moving quickly and aggressively and my oncologist was very confident that I needed that fourth cycle and that it would be the magic bullet that killed off my cancer.
mK: What were your symptoms?
SH: I never really had any! I guess I’m thankful that a milk carton fell right on my crotch at work. Otherwise, I really have no idea how long cancer would have been lurking down there before I realized something was very wrong.
mK: Why are you involved in cancer advocacy? What do you do?
SH: I went to a Stupid Cancer meetup while I was going through chemo and it just instantly made me feel less alone, less terrified by what I was going through. Since then, I’ve really tried hard to give back and help others in the same way. I host Stupid Cancer meetups, I’m a member of the Testicular Cancer Foundation Speakers Bureau, I’ve done some volunteer work with the LLS SoCal Cancer Connection. I’ve written blogs about my journey and my survivorship for Cancer Fight Club. I’m constantly searching for the best ways I can help the young adult cancer community in any way.
mK: Cool. What motivates you?
SH: When I’ve gotten feedback from somebody who’s texted me during a tough night or reached out to me after a meetup and thanked me, it really just nails me how much impact one person can have on somebody else and motivates me to do more of that.
mK: When was the first time you felt like yourself after your diagnosis?
SH: That’s a tough question. There’s some essence of the old me that’s still there, but I think cancer did change me as a person and also make me realize
my true self. There’s this Peter Bjorn and John song “Objects of My Affection” that kinda sums up my feelings: The chorus goes “And the question is: was I
more alive then than I am now? I happily have to disagree. I laugh more often now. I cry more often now. I am more me.”
mK: What makes you laugh, cry, angry?
SH: Nothing makes me laugh harder than a great inside joke with my sister or a friend. They’re like weird connections with people that never go away. I cry at sad films or certain songs. I get angry at cancer and with people who are selfish or lack empathy.
mK: What would you say is the most interesting thing you’ve done?
SH: Oh wow. Well, the week before I started chemo, I did standup comedy and I went to an ayahuasca ceremony. I was definitely in an “all bets are off” mindset where I was now willing to try things that would have previously scared me to death.
mK: What was the toughest challenge you faced as a survivor? How did you overcome it?
SH: During my first cycle of chemo, I ended up being rushed to an ER with neutropenic fever. I was hallucinating and vomiting. Everyone there looked at me
like I was a ghost. I thought I was gonna die that night. Completely horrifying. Once I recovered a little bit, I wasted no time trying to write a song about it and getting it all out on the page. That was my response to a lot of my treatment, really.
mK: Where do you see yourself in 20 years? What will you be doing?
SH: Hopefully, I’ll be healthy and happy; doing advocacy work and also making a living with my music and writing.
mK: What do you like to do in your spare time?
SH: Listening to music and comedy podcasts, reading, visiting art museums, traveling, going to shows, getting together with friends for drinks or trivia.
mK: What are you up to now?
SH: I’m still working on an album of songs all about my cancer journey and everything that’s happened to me since.
mK: Any advice for people or loved ones that get daunting diagnoses?
SH: Be your own advocate. Don’t be afraid to put yourself out there and reach out to people and let them know what you’re going through, as scary as it may
seem. I think back to my younger self and I operated on insecurity and fear a lot: fear of getting made fun of, fear of failure and rejection, fear of people judging me or my motives. Once you let your ego go and open your heart up, who knows what kind of friendships, relationships or opportunities will come your way.
mK: Any parting words for all the mAss Kickers?
SH: I try to live by these words that Conan O’ Brien once said: “Nobody in life gets exactly what they thought they were going to get. But if you work really hard and you’re kind, amazing things will happen. I’m telling you, amazing things will happen”.
Stephen Heaviside: musician, podcast fan, renaissance man, trivia buff, stand up comedian, and driven adolescent and young adult cancer advocate. Thanks for doing this Stephen! We look forward to seeing what you do next! Keep us posted on the album!