The year is 1990, a young couple is getting ready to have a little baby boy. It’s spring time in Washington and the sun is mixing with the rain as it usually does creating spring time showers. This really isn’t important but hey I’m writing this!
Anyway a month after my birth it was discovered during an eye exam that I had cancer of the eyes. My father had it as a child and so they knew to look for it in me. The retinoblastoma usually presents in one eye in about 60% of the people that are diagnosed with it. I was one of the few kids to get it in both eyes.
The first year of my life was spent in and out of hospitals receiving radiation treatments and undergoing at the time experimental forms of treatment. The treatments failed and by age one surgeons removed my right eye. It didn’t slow me down though, I went back to the normal life of a one year old, you know eating coco pebbles, teasing the dog and learning to walk.
The second year of life for me would bring some bad news and more time spent in and out of hospitals. Doctors told my dad and grandparents that the cancer had spread to my left eye. The cancer is also now moving along the optic nerve heading straight for my brain. As if this wasn’t bad enough my mother decided to go crazy and her and my dad were now fighting a horrible custody battle. My biological womb never went to any of the appointments and when she was supposed to take me she failed to even show up causing me to miss multiple appointments. Even at two years old I could tell something was wrong and the stress took a toll on me.
Finally the call was made and they went in and took out my left eye and optic nerves. This last ditch effort hopefully would prevent the cancer from reaching the brain and killing me. It worked but the results meant I’d live without sight in a world built for sighted people. I was brought up like any other sighted kid attending public school and going to real classes.
In 1996 my dad and I were walking in from the bus and he asked me how I’d gotten bruises on my right cheek and around my eye. I hadn’t fallen or hit my head on anything so dad took me to see my doctor. The door to cancer city was opened wide again and my life would change dramatically over the next year and a half. The radiation from the treatments of the Retinoblastoma had long lasting side effects which meant a small chance of tumors and cancers as I grew older.
One morning while getting ready for school I was cleaning my right eye which is a prosthetic made of plastic. The eye fits inside my right eye socket and looks pretty natural, most people couldn’t tell it was a prosthetic. As I wiped the rag gently across the eye it popped out into my hand, I put it back in making sure to firmly press on it to set it in place. A few seconds go by and the damn thing pops out again, dad thinks I’m doing this to keep from heading to the bus I didn’t like school and would try to skip even at six years old.
I’m not sure how long it took for him and I to realize something was seriously wrong but after he watched the eye act on its own he called me out of school that day. Another doctor’s appointment had us up in Seattle for MRI’s and Ct scans.
What the scans showed was a big mass sitting at the base of my skull with thick tentacles spread out through my skull. These tentacles were eating my bones and putting pressure on my right eye socket. The tumor was so big the doctors decided to put me on chemo to try to shrink it down. They gave me three months to live and told my family to be prepared for the worst.
Half a year later after 2 weeks in the hospital for chemo and a week at home for resting they said I was ready for surgery so a week before Halloween in 1996 I underwent a 16 hour surgery. They took me apart and pulled out the tumor and like a human Lego set they piece me back together. I was out getting tons of candy that Halloween!
At 6:00 A.M on Dec. 25th the phone rings and I’m already up and so I answer it. I recognize the voice as soon as Dr. Pendergrass says hello.
“Hello Zack, it’s Dr. Pendergrass.”
“Oh hi, Good morning, want to talk to my dad?”
“No, I’d actually like to talk to you, I have a gift for you. I’m sitting here looking at the results for your scans and blood work and the tumor is gone and no signs of cancer. Well I need to go but make sure to tell your family. Merry Christmas, goodbye!”
I hate the fact I became a Christmas miracle but it is what it is. Needless to say I woke up the whole family yelling and laughing.
Over the next 7 years life would go fairly normal for me but at the age of twelve small tumors appeared on my scans. These tumors were in the same area as the last one behind the right eye and doing damage. Luckily these tumors were taken out without any big treatments or poisons being pushed through my veins.
However 2 years later I woke up with a swollen right cheek and sharp pain against my temple and small lines of fire going across my forehead. I missed school for the next three days until my dad finally got tired of me bitchin’ and I went to see my doctor. The tumor was found quickly and it was discovered that the tumor is restricting the third trigeminal nerve causing trigeminal neuralgia. This became a daily dose of pain that wouldn’t go away with simple medicine. By the age of 14 I was on methadone and other opiates to try to knock the chronic pain down from a 10 to a lower number like 5. Looking back we only managed to drop it down to 8.
I still have this tumor and will live with it for life but I now use medical cannabis to help manage the pain and other side effects giving me a great quality of life. I’m often asked how I made it through all of this and I never have what I feel is the right answer. For me I was just living day to day being a kid and teen, even now in my mid twenties I don’t think about it much. I mean being blind isn’t fun but if I let it get me down I’d slit my wrists and die. Positivity is better than hope or love it’s the duct tape of emotions.
I’d like to talk about cannabis and how it can be used for treating a wide variety of problems. When I was on opiates my intake was extremely high 30 milligrams of methadone each morning with 15 milligrams of pirkaset and a muscle relaxer. That would be followed up 4 hours later by another 30 milligrams of methadone and another opiate. I was told that if I didn’t stop my opiate usage I’d die by the age of 30, how could I make that choice though stop taking pills and live the rest of my life in pain.
Why should I be forced to choose between quality or quantity of life just because pills were eating me from the inside out. Well I started smoking cannabis at age 12 13 but I didn’t really do much of it back then, when I moved back to WA I got my green card and started medicating every day. I’m now almost completely off opiates and live a functional happy quality life.
I much rather put a plant from mother nature in me than some synthetic lab created pill that destroys my body over time.
Building a support group
I’ve always wanted to share my experiences with Retinoblastoma and show young ones going through it that there is always hope. If interested please contact me so I can set up a newsleter and site for everyone to share thoughts and support.
E-mail Me Here