A Milestone Anniversary: Celebrating 30 Years Being Cancer Free
Tuesday March 15, 2022
For many children and their families, eye cancer diagnosis is begins a lifetime journey, with many twists and turns through treatment and long after being declared cancer free. World Eye Cancer Hope USA President Marissa D. Gonzalez reflects on three decades being cancer free from retinoblastoma, the journey of a cancer survivor, and the future with her cancerversary fundraiser.
Overlooking the village of Oia, Santorini, Greece.
It is a gorgeous sunny day in Southern California as I sit down to reflect on this momentous milestone in my life. The birds are chirping, the breeze off the Pacific Ocean is circling my office, and my dog, Lucky, is sunning herself next to me. I can hear neighborhood kids riding bikes, the sound of squeaky flip flops wet from the beach, and dogs barking on their walks.
I cannot help but think that this typical Sunday in my life is something to be incredibly grateful for. Stopping to inhale the little things in life has become more important in the past few years as I have adjusted to being legally blind in both eyes.
A Childhood with Cancer
I was born in 1980 to a single mother who was an educator, anthropologist, and archaeologist. My maternal grandmother helped her raise me.
In the fall of 1981, my mother noticed a white glow in my left eye. She took me to an ophthalmologist who told her she was an overly concerned mom, and there was nothing wrong. As the white glow, known as leukocoria, persisted, she found a pediatric ophthalmologist for a second opinion. That appointment would change the course of both our lives forever.
Diagnosed in early 1982 with bilateral retinoblastoma, I began daily radiation along with cryotherapy and laser treatments under anesthesia. Six months after diagnosis, the doctors decided the left eye needed to be removed, fearing that the cancer would spread to the optic nerve and possibly the brain.
Hesitant to take such drastic and non-reversable measures, my mother questioned the doctor. He said we would be endangering my life if the eye was not removed. So, one month before my second birthday, my left eye was enucleated.
The subsequent five years consisted of exams under anesthesia and more cryotherapy treatments on my remaining eye. I was fitted for a prosthetic eye, and as a child, you couldn’t really tell the eye was not real. As I grew though, the damage from radiation began to rear its ugly head.
The bones at my temples stopped growing at the time of radiation, so as my head grew, indentations formed. By the time I was a teenager, there were visible concave indentations in my face, leaving me deformed.
As my mother and I continued to travel between New York and California for treatments, my awareness of what was going on became more pronounced as I aged. I began to understand that going to the hospital for pre-op blood work meant I would be having surgery the next day.
By age five or six, I would sit in the backseat of the car with my eyes closed tight, anxiety swelling in my chest. I knew every turn the car made on its way to the hospital. My mom would ask if I wanted to play in the play area or read a book while we were in the waiting area. I always refused, sitting with my eyes closed in anticipation of the next few hours.
I hated the gas mask that the anesthesiologist used to put me to sleep. Once I was old enough to learn that I could be anesthetized through my IV, I started asking to be put to sleep this way. One time, an anesthesiologist refused and put the mask on anyways, and in an act of defiance I simply pulled it off and threw it to the ground.
To this day, I ask myself why on earth you would not use the IV when a child can tell the difference, and it would make them more comfortable. I am incredibly grateful that we have child life specialists now to help in these situations. I am certain that if I’d had an advocate in that OR who was there to make the horrible experience even a tiny bit better, this situation would not have happened.
With my mother on vacation in Tahiti when I was four years old. I have this photo framed in my room.
Finally Cancer Free
At age 7, the last active tumors were treated, and for five more years we continued exams under anesthesia to ensure they remained stable. On March 27, 1992, at age eleven, I was finally declared cancer free.
The days of stress, dread, and fear were behind us. The awful vomiting that plagued every hospital day was done. I will always remember the smell of apple juice and ice chips that would not stay down. Before I was middle school aged, I had over 60 surgeries for retinoblastoma – a statistic no child should ever hold.
Life became “normal”, and I learned that it was wonderful not to be in the hospital all the time. By high school, I had found a passion for figure skating, a fabulous group of friends, and hit my stride academically. During these years, the facial deformity was very evident, and my prosthetic eye was looking droopy, but those close to me did not care.
These four years are some of the best memories of my life. I didn’t know yet the challenges of adulthood, and my days were filled with Disneyland trips, ice skating, and innocent fun with my friends.
College was a different story. My Winnie the Pooh comforter was vastly out of place in the USC dorms as my floormates were into drinking and partying. I may have been the most naïve freshman on campus. But by junior year, I found good friends, a love of my classes and faculty members, and thrived academically.
I interned on the set of the TV show Friends for a season, which is still a lifetime highlight. (Yes, all the cast members were very nice, and yes Brad Pitt is very attractive in person!)
With my friend, Diane, on the set of the TV show, Friends.
Two Life Altering Surgeries
The summer between my junior and senior years at USC, I had what would be the scariest surgery of my life. I had gone without a surgery from 1993 to 1998, the longest stretch of my life. But by 2001, the cataract in my right eye – a result of the radiation – had grown so large that I was going blind in my only seeing eye.
My textbooks were being enlarged at USC, and everything was a struggle as the cataract interfered with my vision. My mother found a world-famous surgeon at UCLA Jules Stein Eye Institute who had performed the most successful surgeries on one-eyed patients. So in July of 2001, I went to the hospital for surgery, knowing that if anything were to go wrong, I could awaken blind.
In another surgical act of defiance, I proudly walked into the hospital at UCLA wearing my cardinal and gold USC sweatshirt, to let everyone know where my collegiate alliance lay! The surgery was a success, and my vision remained between 20/20 and 20/25 for the next 17 years.
Post-college life was great for about four months, including a two-month backpacking trip through Europe with my friend Jenny. Then the wedding of my bestie Kristen. But on September 11, 2002, I embarked on my first facial reconstruction surgery to address the facial deformities.
The surgeon made a number of calculated mistakes by operating on radiated muscle and tissue, and this left my face paralyzed. My jaw could not open, and the pain was like nothing I had ever experienced. The surgeon admitted that he experimented with the radiated muscles, and for the first time in my life, I knew what true evil was. I was his Frankenstein, and he left irreparable damage to a 22-year-old who had already been through so much.
Dependency of prescription drugs soon followed, along with self-harm to mask the pain. I was able to pull myself out of the destructive behavior patterns, and had jaw surgery including resection of some muscles. After a year of physical therapy, I had a semblance of my normal life back.
Marissa and her mother, tailgating before a big USC football game.
Stem Cells to the Rescue
I was again surgery free for five years. Until I decided to tiptoe back into craniofacial reconstruction, to help the pain in my head and my physical appearance. But this time, I would maintain control by being fully awake in the OR.
My mom and I travelled to NYC where, with only one dose of valium in my bloodstream, I learned firsthand about liposuction. The surgery took fat from my stomach, centrifuged it to isolate stem cells, and injected those stem cells into my temples. The goal was to infuse this horribly damaged area with healthy blood flow and life.
Little did I know that liposuction is akin to torture, and my right side did not take to the local anesthesia. I think I was shell shocked for a month after that procedure, but the results in my face were fantastic.
Looking to continue doing stem cell transfers, I found a surgeon in Los Angeles who could perform this surgery. We had a successful run of three surgeries, and even used the adipose stem cells to enhance the dermis fat graft inside my left eye socket.
Life Changes in the Blink of an Eye
In 2018, during yet another surgery, my optic nerve had a stroke. The rest, as they say, is history.
The stroke left me blind in my seeing eye, a reality that you can never prepare for. After a week in my least favorite place, the hospital, it was determined that nothing could be done to bring back the eyesight, and I was sent home.
The next months were a whirlwind of appointments, vision therapy, trying what we could to prove the doctors wrong. The pain and trauma of this time is nothing I would wish on my worst enemy. Three and a half years later, the grief is still evident daily. Your life stops, and you never get used to knowing that nothing will be normal again.
I went back to work part-time at USC nine months after going blind, and of course had incredible challenges adjusting to that. I did countless hours of adaptive technology training through The Braille Institute and The Lighthouse Center for the Blind in San Francisco. Slowly, as we hit the one-year anniversary of this horrible thing, life started to fall into place.
I learned how to adjust my home to be friendlier to the visually impaired. I learned to move furniture so I didn’t run into so many things. I mastered the TV and DVR so I could still enjoy my shows, and I stood close to the TV for an important football play or serious scene on a show.
But as life resumed, the daily act of just living would overwhelm me. Something as simple as dropping a piece of food and not being able to find it would set me off into a tantrum. I still have many of these days where I will cry over something simply because I know how easy it is for a person with good vision, versus how difficult it is for a person with limited vision.
On vacation in Antarctica, after losing my sight.
Looking to the Future
As I hit the 30-year mark of being cancer free, I find it both overwhelming and encouraging to look back on the life that retinoblastoma set forth for me. I have no idea what my life would look like had I not been a baby with cancer.
Some people say they would not change their past because it made them the person they are today. It may be selfish to say, but if I had the option, I would love to have been born without this genetic mutation. The reality however is far from that; so I do not spend any time wishing “What if…?” or wondering what path I would have taken. In my mind, there is no point.
That is why I choose instead to focus on what I can control, and what I can do with a cancer-filled life. And that is why about 12 years ago, I became involved with World Eye Cancer Hope.
Over the years, I have become an international advocate and activist for retinoblastoma. I had the privilege of planning the One Retinoblastoma World conference in Washington D.C. in 2017, and the remote conferences in 2020 and 2021. I love our retinoblastoma community, and have served as President of the USA chapter of World Eye Cancer Hope for the past five years.
Looking to the future of the organization, supporting families and survivors is very important to me, which is why I am raising $15,000 for World Eye Cancer Hope, in honor of my 30th Cancerversary. This fundraiser will support
- Regional family and survivor events in Southern California, the Midwest, the Tristate area, and others.
- Support packs that Rb centers around the country can give to families, with resources to help along the journey of treatment and beyond. Packs will include information retinoblastoma, staging, treatments, genetics and genetic testing, follow up care, sibling and family support, child life and mental health resources.
Your donation will directly impact patients, survivors and their families, and children who are yet to be diagnosed with retinoblastoma.
As I close this blog, I would be remiss if I did not say thank you to the many people who have helped get me to this 30-year mark.
To the many doctors, especially Dr. Teresa Rosales, Dr. Andrew Choi, Dr. James Ellsworth and Dr. Laura Bonelli, who have seen and treated me through the decades. To the nurses, anesthesiologists, hospital staff, and doctor’s office staff. To the craniosacral and vision therapy teams I have seen since childhood.
To my incredible therapist, Betty, for teaching me the importance of addressing mental health, and for your unwavering empathy throughout the years.
To my friends and family who have been with me at different stages of my life, from childhood, from high school, from USC, from work and beyond. Your compassion and support through all stages of this cancer journey have been a backbone of strength that I will never forget.
To Kristen, whom I met on the first day of kindergarten. You have been by my side through the very best of times, and slept next to me in the hospital at the very worst of times. I truly do not know where I would be in this world without your love and friendship.
And to my mother, Marty, who insisted that there was something wrong with my eye and did not give up until it was diagnosed. She did not give up as she ferried a small child through bi-coastal surgeries for ten years. She did not give up as she earned a Master’s Degree, while being a single mother to a baby with cancer. She did not give up through all of the reconstructive surgeries, and did not give up when at age 37 her child unexpectedly lost the majority of her remaining vision.
My mother has seen me through the darkest times; through nearly 40 cancer ravaged years. Retinoblastoma and the lifelong effects of radiation never seem to vanish, and thankfully, neither does my mother’s love, sense of humor and support.
Thank you all for reading or listening to this, and for your financial support to my fundraiser. Here’s to another 30 years!
With Dr. Linn Murphree, who established the retinoblastoma program at Children’s Hospital Los Angeles, and Dr. Jesse Berry, who leads the program today.
About the Author
Marissa Gonzalez resides in Southern California and is an event director. She is a founding board member, and current President of World Eye Cancer Hope USA, and was Event Chair for the One Retinoblastoma World Conference in 2017. In her downtime, Marissa enjoys travelling and going to Disneyland.