Joe Long: Testicular Cancer

DSC00171When I was diagnosed at 26 with testicular cancer, all I wanted was to feel normal.  I didn’t want people looking after me or feeling sorry for me; that would have given the cancer more gravity.  If I could keep things normal and hold a positive attitude, I felt that I had a better chance of getting through my treatments.

The urologist who first saw me wanted to remove all of the cancerous lymph nodes in my body.  It’s very invasive—they open up your stomach and move your internal organs off to the side so they can get to the lymph nodes.  I was naïve and thought that whatever the doctor thought I should do was the best and only choice I had.  I called my sister, who immediately made a bunch of calls and did research on my behalf.  She thought I should get a second opinion, which I did.  I ended up getting only the testicle removed, followed up by chemotherapy.

Originally I was stage 2B, but right before surgery, they scanned me and found that the cancer spread to my lungs, which made it stage 3.  The doctors realized how aggressive the cancer was moving throughout my body and put me on an intense 12-week course of chemotherapy.

That regimen hits you hard.  I remember one time I was in my living room watching TV on my couch and I went to the kitchen to get something to eat.  I was so weak I could barely stand and went back to the couch because I didn’t have the energy to do anything.  A friend had to bring me over some food.

During treatment, I really got in touch with my spiritual side.  I came to see my diagnosis and treatment as a test of my belief in the mind-body connection.  Whether it’s about Jesus or Buddha or any of the other books I’ve read, I believed that not only your thoughts, but also your emotions, create your reality.  That’s why I would do anything to keep my mood and emotions up, like watching comedy videos—Dave Chappelle, Bill Burr and Jim Carrey, in particular.   I surrounded myself with good people, too.  I knew that was going to be the most powerful thing I could do mentally.

Photo on 1-9-14 at 6.43 PM #2It took me eight months for me to get all of my energy back.  When the doctors told me to expect that, I thought they were nuts.  I tried going back to work about a month after my last treatment, but after getting up and feeling like a million bucks, I would crash after a couple of hours. Gradually over the following weeks, my energy increased.

I wanted to put my cancer experience behind me as fast as I could.  I wanted to get back to work, back to my normal way of life and I didn’t want to lose my job.  I was trying to put it all behind me, I was trying to forget about it, and I was trying to move on with my life.  It was as if I locked up that memory and put it on a shelf and I didn’t want to address it for a while.  Even when I would tell people about it who didn’t know that I had been sick, it was a surreal experience.  It seemed like a distant memory of a few years ago, rather than just a few months.

Gradually, I became more open and wanted to be a resource for those going through it.  If my sister didn’t help me avoid a very large, expensive and invasive surgery, I could be in a completely different spot than I am now.  I started to realize how important it was to share your story, but I wasn’t actively seeking to help others.

After some prodding from a friend, I went to an Imerman Angels event.  I appreciated the survivor-to-patient mentoring they promote, but I wasn’t totally on board.  But I ended up talking with Jonny [Imerman] and we really connected.  His mission, his personality and his story just blew me away.

DSC00198Jonny reached out to me a week later—he turned on a switch for me—and the next thing I knew, I was signing up and was actually excited about meeting this guy named Scott Minnig who was going through testicular cancer treatment.  I assumed he was just diagnosed and would have a full head of hair.  But when I met him, he was bald, pale and thin.  It floored me.  Meeting him brought me back to when I was in treatment.  It shook me to my core.  We ended up hitting it off and became great friends.

It’s special when you can offer your experience to someone going through cancer who doesn’t know what’s going to come around the corner.  You can say, “Hey, I’ve been through this, I know what you’re going through, and I’m not here to push anything on you.  I’m here for you, or if you don’t want me, I can go.”  That’s very powerful.

I don’t know if I would have requested a survivor when I was going through treatment.  At the time, I felt like it was something that just my family and close friends would go through.  And some people, like me, don’t want to get emotional in front of strangers.  I’m more of a one-on-one type person.  The powerful impact of one-on-one support is that it’s open and flexible—a person doesn’t have to stay within the structure of a support group.

Since becoming an Angel, I’ve been introduced to an incredible network of people in the cancer community.  My friendship with Scott is awesome—he’s a great guy and has a great family.  But what he’s given to me in return has been unbelievable.  He started a foundation, Beards 4 Balls, to bring awareness to testicular cancer.  I get to meet other people trying to do amazing things to help people in the cancer community; it’s so badly needed.  I find it very moving and I’m blessed to be a part of this world.

Joe is a 10-year survivor.

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