MRF Blog

#EyeGetDilated: William Karp

November 15, 2017 | Categories: Causes, Ocular Melanoma, Patient Stories

Guest blog post by OM survivor and #EyeGetDilated advocate, William Karp:

My OM journey began so quietly that I didn't know I was even on a journey. For a long time, I had been noticing that the vision in my left eye was becoming a little cloudy. I just assumed it was something benign like a cataract since I was approaching the end of my 50's and the anticipation of all kinds of physical decline. This may have been going on for weeks or months before Bill Wiley - the smart one in the family - convinced me to see an eye doctor. It had easily been five years since I had seen an eye doctor.

My appointment was February 14, 2015. Valentine's Day. We figured after a quick eye exam we would spend the day doing silly things to celebrate the day. Thrift shops, hamburgers and ice cream were on the agenda. But, as it turned out, there weren't going to be any silly funny activities after all. After completing the dilated eye exam my doctor asked me a few questions before saying, "I can't be certain but I think that you may have a melanoma in your eye." My heart sank. I had been here before. In 2005 I had been diagnosed with stage 3 cutaneous melanoma.

I got up from the chair and went back to the waiting room and grabbed Bill W, telling him that something was wrong. We then listened as Dr. Hargreaves told us all kinds of stuff, but nothing was getting in. It was just a lot of gibberish that may as well have been a different language.  Fortunately, Bill W got the important details and the name of a reputable ocular oncologist.

Over the years since my "other" melanoma things had almost become humorous in the cancer detection department of our lives. Ever since the Melanoma Episode of 2005 I had been subjecting myself to quarterly body checks that were typically embarrassing, invasive and sometimes ticklish. They usually ended, like all good things, with a shot of pain killer and a biopsy. I've had like 20 of them. No biggie, and aside from the occasional basal cell carcinoma they always came back negative. 

Looks like my body has turned on me again. Apparently my left eyeball has been smoking or coal mining or eating bacon because how else do I explain getting a melanoma in there? It’s the only (and I do mean only) part of me that my dermatologist hasn't examined with obnoxious magnification and regularity.

Fortunately, we were able to get an appointment at Murray Ocular Oncology just three days later and after a battery of tests that felt like I was jettisoning into another dimension the OM diagnosis was confirmed and I learned all kinds of facts and averages and chances and a lot of very large words like brachytherapy and micrometastisis.

I had a medium-sized choroidal melanoma resting on the optic nerve in my left eye. No, my eyeball hasn't been sneaking out to tanning salons and unless it was moonlighting as a welder it probably is not due to anything I did. I found out it was unrelated to my other melanoma, just crap luck to get them both but I still can't shake the feeling that my body is betraying me, trying to sabotage the whole Karp machine thing.

I had my brachytherapy, spent five nights in the hospital and went home feeling bruised and battered but alive.

My OM journey is just past the two-and-a-half-year mark. Life has changed in so many ways.  The good news is, as of my last scans, I am mets-free and my vision in the treated eye is 20/25.  On the other hand, I get Avastin injections every six weeks and MRIs, CAT scans, ultrasounds and X-rays so often that I am glad to be bald because there is no extra time to squeeze in a hair cutting appointment. 

Four things I tell everyone who I know, who I work with and even strangers on the streets:
1. Get a dilated eye exam. Get one now and do it annually. Maybe if I had had a dilated eye exam annually we could have caught this thing earlier and the intervention might be a lot less cumbersome. This is really important. I was so diligent about getting these constant full body checks but never even thought about my eye health. 
2. Make someone happy. Do this every day. This is just as important as a dilated eye exam.  Lots of us with OM have high levels of anxiety about all of the very real dangers that we are faced with. It can be overwhelming. It is overwhelming. But I have noticed that if I get out of myself enough to make someone smile or laugh it is impossible not to smile too. It's like puppies, but all the time and without the poop.
3. This may be the toughest one but if you can swing it, get Bill Wiley as your caregiver. Ok, so this may be a shameless plug but I don't know how all of this would be possible without him. On a more serious note, take care of your caregivers. They are going through this too. If you have OM, you may be the central character, but only relating to your OM. Our caregivers are all of those supporting players and they need us to be there for them too. 
4. Get a dilated eye exam. This may seem similar to Number 1. But it is so important that you just think it is here twice. If you haven't had a dilated eye exam in over a year make an appointment now.
 

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