For me, 2022 marks two epic milestones in my life. It was 25 years ago that I married the love of my life. It was also 25 years ago that I was diagnosed with stage IV non-Hodgkin's lymphoma. Talk about your highs and lows!
Just days before I began my cancer treatment, my then-girlfriend Gabriela and I tied the knot in a no-frills wedding at the San Diego County building in Downtown San Diego. Not to get Dickensian on you, but it really was the best of times and the worst of times.
The surgical biopsy was the worst day. As I lay silent, scared and shaking in that cold, antiseptic surgery recovery room, the ear, nose and throat doctor told me that I had lymphoma and that I should schedule an appointment with an oncologist immediately.
A few weeks earlier I had visited the E.N.T. doc's office to check out a walnut-sized lump on my neck about three inches to the left and below my Adam's Apple. I ignored it for too long. I just didn't think it could possibly be serious. I was 34 years old when I first felt it.
I was in an age bracket that I cluelessly thought had nothing to fear in terms of cancer. While cancer did briefly cross my mind when I first discovered the lump, I quickly dismissed it. Not possible, I thought. I'm just too healthy and too young. Boy was I wrong.
When the doctor initially did a needle biopsy of the lump, it came back "inconclusive." But when I came into the exam room he was holding a folder on which the word LYMPHOMA was written in large type, all caps. He already had a good idea what it was.
Obviously I wasn't meant to see that folder. My heart started beating super fast. Tears welled up in my eyes."Oh, shit," is all I could say. He reassured me it wasn't definite, and that only the surgical removal of the swollen lymph node would tell us for certain.
When he entered post-op, with no emotion on his face and in a monotone voice, he said, "Mr. Reno, you have lymphoma. I'll contact the oncologist," and walked out. Yes, he flunked Bedside Manner 101. But no matter how he would have given me the news my response would have been the same.
I shed more than a few tears that day. I thought my life was over. Throughout the cancer diagnostic process, in fact, I kept thinking it was a bad dream from which I would awaken. At other times, I honestly believed they had the wrong guy and that they were looking at the wrong chart.
But it was real. And it was hard to accept. I was 35 years old, living on the beach in San Diego and engaged to the girl of my dreams. I was a multi-sport athlete who had landed my dream job as a correspondent with Newsweek. I didn't smoke. I was very health-conscious and in great physical shape. I surfed in Hawaii and played tennis and basketball regularly. I was healthy, and happy.
After undergoing all the subsequent obligatory scans and tests, the oncologist gave me the official diagnosis: Stage IV follicular non-Hodgkin's lymphoma. It was bad. There was a frighteningly large tumor in my nasal pharynx, which explained why I sometimes had headaches and dizziness. I just dismissed that as stress from working so hard.
There were also tumors in my neck, abdomen and pelvis. The oncologist said I would be fortunate to live five years if I was lucky. That's pretty tough news to take when you're 35 and your whole life is ahead of you.
I started chemotherapy a few days after Christmas. But not before my girlfriend, Gabriela, and I got married. Needless to say, it was the most bittersweet day of my life. I was so scared of the chemo and of dying. But I was so overjoyed that Gabby had chosen to be my wife as I headed down this dark road. She insisted that we get married before I begin the treatment.
There is one thing I know for sure: I would not be alive today without Gabby's love these last 25 years. I am even more in love with her today than I was the day we recited our vows and I prepared to start chemo.
We had a big, bold Gatsby-themed wedding planned for the following April, but we canceled that and instead did the no-frills wedding. Just me, my wife, and my sister, Michele Reno Brown.
The chemo was even worse than I feared. It was brutal for me. Thankfully, not everyone gets as sick as I did. But I got through it. And I kept working, at least through most of it. I've never really stopped working since I was diagnosed with cancer.
My Roller Coaster Life Since the Diagnosis
Since my initial diagnosis, the cancer has recurred, a couple times. I've fought it off with a combination of integrative/holistic things and traditional pharmaceutical treatments.
I opted to enroll in a clinical trial of an experimental radio-immunotherapy treatment for lymphoma called Bexxar, which, along with all the dietary, lifestyle and supplemental things I was doing put me in remission and saved my life.
There have been a lot of high highs and some low lows in the past 25 years. I've had many difficult health issues related to the cancer, including blood clots that entered my lungs and almost killed me. But I'm still here.
And of course the highest high was when our daughter Mandy Reno was born.
It's impossible to adequately explain what it feels like to have a child after thinking it would never happen because of a serious illness. It has been the single most inspirational thing of my life to watch our daughter grow up and spread her wings. I am so proud of her. It has been pure joy.
During this roller coaster ride, I've learned a lot about myself and about human nature. That is, the good, the bad and the ugly in our nature. Perhaps the most surprising and troubling thing I've learned is that in the eyes of some folks, even those you love and who love you and who mean well, you at some point become your cancer.
Despite all the successes you have post-diagnosis, despite all the things you overcome, including sickness, anxiety, fear, physical pain and emotional turmoil, people eventually stop differentiating between you and your illness, especially if you got your cancer at a young age.
Because, you know, cancer is just for old folks, right?
Some people conclude that if you're sick when you are still young, that is the choice you made, that is just who you are. You essentially become your illness.
If you're unable to do something in your life, whether it's taking your daughter to school or attending a family reunion or wedding of a close friend or you name it, some people in your life inevitably no longer think it's because you were dealt this bad hand. They just see it as your choice.
People often see you for your inabilities. They blame you, not your illness, for things you can not do. It's not a conscious or mean-spirited thing. It is I think largely involuntary. It's human nature, I guess. And it is based largely on fear, as most of our prejudices are. On some level, everyone's afraid of getting cancer.
We're Still Here!
So, for every cancer patient and survivor or anyone reading this who has battled any serious illness, and specifically to the teen and young adult cancer patients out there, I want you to please remind yourself of these very important words:
You are not your illness!
You didn't ask for any of this. You don't deserve any of this. You are not to blame for any of this. And it is not your fault that sickness and pain sometimes prevent you from doing the things you want or even need to do or being who you want to be.
You are not the things you can't do. You are in fact all the amazing things you can do and have done despite being sick and in pain -- no matter how small or inconsequential they might seem to someone who has never battled serious illness or chronic pain.
Despite being scared, despite being in physical pain, despite everything, you are still here. From the moment you hear those words, "You have cancer," you are a survivor. And everyone who has ever heard those words is my hero.
Cancer strikes people of all ages. And many cancers are in fact on the rise in adolescents and young adults, who are also now referred to as AYA's.
Teens and young adults with cancer live in an in-between space. They aren't really comfortable in a chemo room with much older adults, and they are equally uncomfortable in the pediatric area with little children.
This is one of the many things that is being addressed by Teen Cancer America, a dynamic, outstanding cancer organization that has built facilities in more than 45 American hospitals that give this teen and young adult age group a place in the hospital that is just for them.
I am proud to be working with Teen Cancer America on this ten-part series. It comes at a perfect time for me. This year, as I enjoy an extended celebration of my 25 years with my soulmate and 25 years of survival, I want to express my admiration and love to all my fellow cancer survivors.
And I want to send specific love and congratulations to anyone who's battled massive chronic pain. It isn't easy.
I remain a relentless optimist. I proudly spend most of my time now writing about cancer, in my journalism and my books. I am also an advocate for cancer patients and their families and I have created multiple educational initiatives for my fellow patients.
I am especially honored to be writing this series of stories about teens and young adults with cancer. And I want to thank Seagen for supporting this series.
This is the first of ten in-depth stories on the unique issues that teen and young adult cancer patients face. We will touch on a broad range of issues that affect the lives of teens and young adults with cancer.
I want to hear from you. I sincerely want your input.
Contact me directly at jreno@san.rr.com
Meanwhile, don't cry for me. Even though I'm still in physical pain, I love being alive and I try not to feel sorry for myself. I am profoundly grateful for my life.
I am not my illness!
