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#EyeGetDilated: Mark Weinzierl

Guest blog post by Mark Weinzierl, OM survivor and MRF Board Member:

IMGMy name is Mark Weinzierl and for the last 14 years I have been a survivor of a rare cancer that affects your eyes called ocular melanoma (OM). Although it is in the melanoma family, it does not share the same attributes as cutaneous (skin) melanoma.

In 2006 on a family trip with my wife Alison and son Zach, I got off the plane and had trouble focusing with my left eye. This had been going on for a couple of months, but previously after blinking a few times, my vision would return. This time was different. No matter how often I blinked, my left eye remained blurry. After joking with my wife about us getting old and promising her that I would visit an eye doctor when we returned, I thought nothing of it.

The week we returned I went to visit a local optometrist. He ran me through the typical paces, but when he started looking at my left eye, something just didn’t click. He proceeded to dilate my eyes where he was able to tell my retina was starting to detach (we would find out soon it was more than a simple detached retina). The optometrist sent me to a retina specialist here in Dallas who ran me through multiple hours of tests.  After the final test, she hit us with a word that sent my wife and I into shock. She told me I had cancer of the eye and I needed to see a specialist in the field.

My mind started to race off in a million directions and the internet soon became my friend and my enemy. My wife and I learned the details of ocular melanoma, just how rare it is (6 people out of 1 million) and how potentially dangerous it is with just about 50% of all people diagnosed eventually dying from metastatic (where the cancer spreads to other parts of your body) disease with no cure available. This diagnosis has a strange way of playing tricks on your mind. I had an initial scan of my body to make sure the cancer had not already spread and while sitting through the PET, CT and MRI scans your mind is already thinking the worst.

Fortunately, I got through the first round of scans NED (no evidence of disease) and began meeting some of the most dedicated and passionate doctors, caregivers and researchers. My first stop was to Dr. Fuller in Dallas who is one of the experts on this disease in the Dallas area. He confirmed the diagnosis and presented me with the option of treatment in Dallas or going up to Philadelphia and being treated by one of the world’s experts, Dr. Carol Shields, at Wills Eye Institute.

My wife, son and I were on a plane to Philadelphia within a week and Dr. Shields proceeded to use a “radioactive disk” placed on the tumor in my eye to kill off the tumor already there. I was somewhat isolated for five days at Thomas Jefferson Hospital while the radiation did its trick. During the five days, my son could not visit, and my wife could only visit for short periods. On the 5th day, Dr. Shields removed the radioactive disk, bandaged me up and I was on my way home.

This was only the start of my journey. During the initial operation, Dr. Shields took a small sample of the tumor for genetic testing. The testing came back with results that made me more prone to the disease spreading. Remember the 50% number from earlier? Well, I now wake up every morning with just a little bit of anxiety, a coin flip so to speak, on whether the disease will spread or not. I have been very fortunate to date. I continue to get scanned every six months and I have seen my son grow up before my eyes (well at least 1 of my eyes, as the radiation has destroyed most of the vision in my left eye). But it is amazing what the human body is capable of. My right eye has taken over and I rarely notice the loss of vision. I was introduced to Dr. Takami Sato, an oncologist at Thomas Jefferson University in Philadelphia and one of the leading researchers and doctors in treating and researching a cure for metastatic ocular melanoma. I see him regularly and am grateful for him and his team. It has been 14 years and I still have anxiety, especially around the times where I go in for scans, but having a positive attitude, my family and the great doctors to keep me going allow me to lead a fairly active and normal life. I have become involved in helping raise awareness about this disease through my association with Sidney Kimmel Cancer Center Advisory Council and I have been on the Board of the Melanoma Research Foundation (MRF) for the last 6 years. I look forward to the day when we can find a cure for ocular melanoma.

Behind every OM warrior are the family, friends and loved ones who support them. CURE OM is dedicated to offering whatever support is needed to all those who share in the fight against OM. In this season of giving thanks and giving back, please consider a tax-deductible gift to show your support: