The day started out as most days often do. Get up; get ready and head to work. During the tour nothing exciting had occurred. My thoughts were more on the first day of class, which was that evening, and I was leafing through the assigned textbook “Intro to Criminal Justice”.
Later in the afternoon, when I was more or less clock watching I received a call and was told to “Get Here Now”! With the here part meaning the doctors office where my kid was receiving a check-up that day.
WTF !
The kid was only at the doctors to get a routine physical. The drive was a blur to me. Questions ran through my mind, questions with no answers, my thoughts were all over the place. Trepidation increased by the minute.
I arrived at the hospital, parked my car and walked over to the entrance. Riding up in the elevator, I thought, keep bad thoughts out of your mind. Don’t assume anything. Positive thoughts!
After alighting the elevator, I saw several whites coats and immediately my eyes fixated on the one with a Dana Farber patch. Shit, not good. One of the doctors approached and said, “Can we step into the office to talk?”
As we entered the office I suddenly needed somewhere to sit. My legs felt as though they were rubberizing and if I didn’t sit down real quick I knew I would end up on the floor. Several doctors followed us in. They stood there with a look that I’ve seen before, in fact, I’ve had to deliver unpleasant news through my job many times before. So I recognized that “How do I say this” look.
“We have to inform you that your kid has Retinoblastoma”. “What!” Although the blastoma and the presence of the Dana Farber doctors had told me something terrible had been discovered. I still had hope for the best though. Then the doctor confirmed my suspicions. “It is a rare cancer of the eye which afflicts children”… I didn’t hear much else. It felt like my life force was being sucked out of me. My ability to hear and comprehend was compromised.
After being informed about this particular form of cancer and given the variables involved we left the hospital and went home. We had 3 days to make a decision. What would we choose? Our options were Radiation or enucleation (removal of the eye). How do we make it? What were the pros and cons of the options? In 3 days we would have to decide and live with the choice.
I immediately went on-line to find out more about this disease. Those were the days of dial-up connections, so it took a few hours to get some basic knowledge about Retinoblastoma. Researching the signs, symptoms, diagnosis, and treatment options, I printed out everything I could find. I didn’t like any of the options but knew the decision was going to affect us for the rest of our lives.
There were several sites (early versions of Blogs I guess) where parents told their own stories concerning Retinoblastoma. The parents who tried Radiation, Chemo, or in one particular couples choice, where they used a layer of gold placed behind the eye and blasted away with radiation, they all were burying their kids in 18 month or less. One con to radiation is that the cancer could travel through the optic nerve and spread to the brain. Another one is that in the area where they concentrate the radiation, bone growth is retarded and would appear as a dent in the temple area when/if the child grows up.
I’ll use Elisabeth Kubler-Ross model of dealing with grief/death while trying my best to describe my emotions during this part.
1) DENIAL- the whole first weekend was serious denial. I kept thinking I would wake up and laugh it off. You know, a parents nightmare. I couldn’t sleep that weekend. Tossing and turning while feeling angst over the situation.
2) ANGER- I’m not sure I would call it anger. More like a desire to lash out at someone or something. Who can I blame? Did it come from his mother? Me? The Doctor who misdiagnosed the condition when I first asked why does his eye look funny? There had been a couple of times at previous appointments where I expressed some concern that his eye looked “odd” in low light situations. (One sign of the disease is what they call “Cats Eye”). A glossy look to the eye, especially in low light. The Doctor replied that it was blocked tear ducts. Rub them several times a day and he’ll be fine.
3) BARGAINING- I prayed or more like begged, the Supreme Being to fix this. I promised everything to every God and every version of him/her I could think of. Send me a sign, anything, Please! There was nothing I wouldn’t have done to change the hands of fate.
4) DEPRESSION- More like despair. I cried like a baby. Drank some more and cried even more. Never have I felt this low. Not my style. Take it like a man and deal with it. None of that rhetoric worked. The emotions took over and controlled me, not the other way around. There was no stopping them this time.
5) ACCEPTANCE- This is the stage that I don’t think some people ever get to. For me at least I didn’t accept it then, nor do I accept it now. All I knew was a decision was to be made Monday and I would have to be sure about it. “Do I try to save the eye?” even though the Doctor didn’t think he could see out of it now? Maybe gamble to save his peripheral vision? Take a chance on the cancer spreading?
Monday morning came and we went about getting ready to head to the hospital. Not much was said. Just melancholy looks, nods and inarticulate grunts were passed between us.
After arriving at the hospital and meeting with the doctors one last time the decision was made to enucleate. All but one doctor advised us not to gamble. We agreed. Sammy Davis Jr. and Peter Falk were just two people who only had one eye and they seemed to get along fine. Being a baby, the doctors said the kid would adjust fine and probably never know any difference. We’ll see about that.
Later in the afternoon, after the surgery we came home and put him down to sleep. Now that we had made our decision our minds were filled with the question…”Did we make the right decision”? Or did “we make a bad one”?
A few days later the doctor called and told us that the tumors (3 in all) were malignant and the right decision was made. He scheduled a follow up appointment to inform us on how to take out the temporary prosthesis and clean it. One thing he did leave out was that that process was going to be mentally and physically hard. In the beginning it was a 3-person job. One to hold him down, one to hold his head and one to take it out. It was excruciating to hear him scream and struggle while we tried to perform the moves needed. The physical part was easy as compared to the mental anguish I felt when we had to do it. I wanted to scream each and every time we cleaned it.
I took a leave of absence from work and just sat around in a deep depression. Although the surgery was considered a success I still felt angry at everything and everyone. I didn’t want to go to work and face any questions or phony ass sympathy routines, let’s keep it real. Most of us when we perform our sympathy routine are thinking I’m glad it’s not me.
Then one day I figured going back to work would probably be the best thing for me. Some sense of normalcy, if you can call it that.
It’s been over a decade now since we went through this. Everything is good and unless you were told you would never know one of his eyes is a prosthetic. Every check-up since he has been declared cancer free with no apparent complications. The kid runs around like crazy. Is a normal kid (my opinion) and actually takes the prosthetic out himself to clean it. He wears safety glasses that look like regular glasses. He does lack depth perception, which seems to be only a problem when playing a sport. Who cares about raising a sport star? Not me. I want to raise the next Steve Jobs/Bill Gates/Barack Obama.
But, I’ll tell you, not a day goes by that I don’t think about it. I still get depressed when I do. I often wonder if we did the right thing. Should we have tried the radiation etc? So whenever it comes up I just follow the “Ignore it as much as possible routine”. You know the stereotypical male response to stress, which is bullshit stupid at best. The show no feelings and suffer internally crap most boys are raised to believe.
The American Cancer Society reports that 565,650 Americans will die from various forms of the disease this year alone and that over 1.4 million new cases will also be diagnosed. It is the 2nd leading cause of American deaths each year. With Heart Disease being number one.
America is the world’s richest nation and as far as I’m concerned, have the wherewith-all, the scientists and the technology to work on, hopefully, one day of finding a way to eradicate or at least control the spread. Turn it into something that doesn’t cause death and despair. I hope I’m still around when it does happen.
I’m sure all of us have lost someone to it, or experienced it ourselves. I write this to try to convey what my experience was/is and have linked Social Vibe to Stand Up to Cancer on the blog because every little bit helps. Whatever we can do to contribute to the eradication of cancer and raise awareness we do. Whether it’s time, money or both, let’s do our part.
Thank You
SocialVibe