One of my earliest and most prevalent memories is lying down in an eye doctor’s chair, my head being squeezed tightly between my dad’s legs, while he held my arms down and an assistant held my legs. By the time I was 10, my dad surely had the strongest quads of any man in the world, because I was not succumbing to the ophthalmologists’ torture without a fight. My first 12 years of life were spent fighting the “attack of the scary helmet.” I am probably the only woman in the world who would much rather see a gynecologist than an eye doctor! A badge of honor I hold dearly. Thanks to eye cancer and jacked up eyes from the treatments that saved my life, I was exposed to many medical terms that most people do not hear until they qualify for AARP. I could spell Retinoblastoma before my own name, and I knew that dilate meant to make something bigger before I knew my multiplication tables. The vision in my seeing eye could only be corrected to 20/200 at that point, so my sense of hearing was keen despite some radiation damage to my right ear. Well, we thought it was keen.
At one of my 4-times-a-year eye appointments, I heard my ophthalmologist say, “The Cadillac in her right eye is growing, and one is developing in her left eye.” I was about 5 or 6, and my mom started crying, my dad did his stoic thing, but I was more worried about getting to Toys R’ Us to get a toy for my stellar behavior. I think my mom asked some questions, but I was cool. I just needed to remember, “Cadillac.” On our way home from Atlanta, we stopped at my grandparents house. It was halfway between Atlanta and Carrollton. Mom usually used the excuse that it was a bathroom break, but now I know that my mama needed her mama on those days. When we arrived, we found out that my grandmother had gotten a new car. (Different cars were the norm, but a new car was a big deal coming from my used car dealing Granddaddy.) When I asked what kind it was, my grandmother said, “It’s a Cadillac.” I basically started dancing like Carlton from The Fresh Prince of Bel-Air, and exclaimed, “Yes!! I have those too!!!” When my mom asked what in the world I meant, I said, “Mom! Dr. Pollard just told us! I have a Cadillac in my bad eye, and I’m starting to get one in the good one!” Mom’s stress melted away and she laughed for a good five minutes. I then had a lesson in etymology, and was confused that the Escalades I was growing were actually called “cataracts.”
Every eye appointment since then has included a discussion about my Cadillacs. (Old habits die hard.) I have had it ingrained in my brain as deeply as my aversion to white jeans after Labor Day: “We will remove the Cadillac from the bad eye when we can no longer see her tumor through it. We will remove the one from her good eye when it starts affecting her vision, but it is very risky, so we want to wait as late as possible because she might lose vision.” In my mind, my 70s or 80s seemed to be an appropriate “as late as possible.” However, it seems that radiation stunted the growth of everything on my face except for those pesky cataracts. I had the one on my bad eye removed in 2001. It wasn’t easy, but that eye is only for decoration, so there wasn’t a fear of losing function.
So, here we are, as late as possible= early/mid thirties. Sweet. The growth has been quick and substantial, and my vision is deteriorating. If we don’t remove it soon, then it will grow past the point of no return and I will lose any chance of maintaining vision. Next month, we will “suck it out”– my very esteemed surgeon’s technical words– and see what happens! In the vein of MollyROCK, I will be radical and open and admit that I am scared. (A truth that I have only admitted to my mom via text message.)
Here is what I am scared of:
- First and foremost, I’m letting someone touch the eye that usually ignities a karate chop to whomever or whatever invades its space.
- This is not a cataract like your grandparents get, it is more complicated, it is on the back of my lens instead of the front, it is more dense, and removal is riskier.
- We will not know if it has infiltrated my retina until they start to remove it.
- If the anatomy of my eye was a score on a standardized test, it would be “below expectations” at best. We do not know if my retina will be able to withstand the trauma of removing it.
- If (WHEN) the removal is succesful, we do not know how long it will take my vision to adjust. So, I have to relinquish some independence, and put myself at the mercy of my parents and friends.
- If I have to hire a driver forever, should I use Craigslist or Career Builder? Will my driver accept Peanut M&Ms and hilarious company as payment?
- There are no guarantees that I will regain vision. There, I said it.
Here is why I am not scared:
- My doctor is amazing. There are people who say, “I don’t care if they’re nice, I just want them to be the best at what they do.” I am not one of those people. In fact, I have kicked a physician out of my hospital room and off of my case, because he was a jerk. Another physician on the case said, “But, he’s the best in the country at what he does.” I said, “Find me the second best, and send him to me if he has had any courses in bedside manner.” I was a senior in high school. I’ve seen the doctor that is doing my surgery for nearly a decade. He is compassionate, patient, humble, and skilled.
- I don’t really have a choice. It’s either let the air out of the balloon slowly and just wait on my vision to go away, or go down in a blaze of glory trying to save it! I’ve always had a flair for the dramatic.
- If (WHEN) it works, I won’t need a contact or glasses for several years! WHAT?!?!?!?! I’m going to feel naked and weird and free!!
- My parents have carried me through every medical crisis in my life, and I know this will be no different.
- I had to take visually impaired classes in elementary school. I know how to use my feet to feel for elevation changes, count steps, and run my hand along walls in a way that rivals Helen Keller!
- I always need an excuse for awesome sunglasses.
- I have made a habit of defying medical odds. It takes 30 days to break a habit, right? I will pretend like every day that I wake up is a defiance, so hopefully I am still in the habit.
- Kathy Kenimer makes the best cookies in the world, and I am fully expecting to binge on Diet Coke and her cookies whilst listening to TV and making my mom do dramatic readings of Facebook statuses.
So, there you go. That’s why MollyROCK has been a little quieter. I’m here, but I’m a little preoccupied and have spent a lot of time with dilated pupils. In the last few days it has been announced that Georgia’s maternal mortality rate is the highest in the country. The U.S. is not improving in reducing the deaths associated with childbirth. I am sad. I am mad. I want to raise all sorts of cain. I am going to. First, I have to adjust to “as late as possible” being right now, accept the truth of what may be coming, get excited about the huge possibility of improved vision, and watch YouTube videos on how to turn a Pug into a seeing eye dog. (Just in case. Who can sew a vest for my baby? She’s a littile rotund in the chest area.) I am headed to volunteer at Camp Sunshine on Saturday for two weeks. Just in the nick of time! No other place inspires such hope and calms so many fears. I’m sure I will leave there, just as I do each year, feeling as if I could conquer the world— or at least slay a Cadillac!
More than meat loves salt,
P.S. If you are interested in donating to my efforts to raise funds for Camp Sunshine, you can read about my passion for this organization and donate here: http://campsunshine.kintera.org/faf/donorReg/donorPledge.asp?ievent=1118333&supId=214867010