In December 2016 I was diagnosed with a rare form of cancer in my left eye, Ocular Melanoma. After much thinking on the matter in the recent months I decided I wanted to share this to help raise awareness for the disease.
Ocular Melanoma (OM) is diagnosed in roughly 2,500 individuals in the United States each year. To put this in perspective at this rate it would take 40 years to fill the Rose Bowl in Pasadena or just over 7 years to fill the Pepsi Center here in Denver. With the odds of contracting this type of cancer being 1 in 129,000 in the United States (roughly 23 new cases each year in the Denver metro area), you can see why most likely you are hearing about this for the first time.
Unfortunately, we all know more people than we should who have battled cancer over the years. For me the list of names includes Venu, Christina, Ben, Julie, Heide, Michelle, Don, Helena and many others who amongst them have battled brain tumors, breast cancer, colon cancer just to name a few. I know we all agree here with two words, cancer sucks. When we hear stories of cancer we can somewhat relate as we know of someone else who has battled those types of cancers, granted it will never be the same as being the one who is going through the treatments or watching a loved one through their courageous fight. With a rare disease like OM this is not the case, we don’t know others who have battled this type of cancer leaving a lot of questions unaswered.
One of the first things you probably thought or wanted to ask about this type of cancer once you heard the word melanoma was, is this related to skin melanoma. The two are not related as there is no link between UV exposure and OM, and like most other cancers the exact cause is still unknown. OM is the most common type of eye cancer and in about half of all cases the cancer will spread to other parts of the body through metastasis. This happens through the blood stream thus the primary location for metastasis to occur first is the liver but it has also been known to spread to other internal organs.
Just about a year ago I underwent treatment for OM with a radiation plaque sewn to the back of my eye which sat in place for a week. This was then removed and I was limited to the activities I could do for the next couple of weeks as the eye recovered and the muscle which was detached and reattached completed the healing process. All of this was through outpatient surgery and living in Denver I am quite fortunate to have a doctor not far from me who specializes in this type of procedure.
This past October, I went to a conference put on by the Ocular Melanoma Foundation with other OM patients and caregivers. Over the weekend, I met other patients recently diagnosed and those who have lived with OM for many years. One of the reminders I received during this conference is the statistics are not always encouraging for an OM patient, but I am not a statistic I am a person. I can also say we are all in this for the long haul and will continue to work in any way possible to help find a cure for this disease.
Another take away from the conference brought me back to a couple of years ago while getting dinner at an overnight layover in Seattle when I met Sean Swarner. Sean was diagnosed with cancer as a teenager and was given just a couple of weeks to live. He not only battled Hodgkin’s disease but also beat Askin’s sarcoma not too many years later, two completely unrelated cancers. Even with one fully functioning lung he has gone on to summit Mount Everest, as well as the tallest peaks on each continent also known as the “Seven Summit’s”. While he was not talking about these accomplishments with a handful of us at the bar having dinner, it was more so the importance of living in the present. He can speak first-hand about not knowing what tomorrow will bring for us in this world.
Thinking about what I heard from this chance encounter, I have been doing what I enjoy and have also been quite busy traveling this past year. From visiting my fiftieth state, going to Ireland, experiencing a person to person cultural exchange in Cuba, seeing the total solar eclipse, traveling on Alaska Marine Highways from Juneau to Bellingham and many more small adventures in between it is time not to sit back but continue to live. These adventures are and will continue to be documented on whereisneil.com with the goal of inspiring others to discover what is around them locally as well as places across the world.
Just after radiation therapy I was talking to a good friend Jason, when I mentioned the biopsy results and stated how the numbers were for me of having metastasis in the next five years. Without even a split second he stated those numbers to me in reverse giving the much better percentage of it not spreading. It was better to hear it in this manner and also changed how I think about the positive in my battle with OM. Jason unfortunately knows all too well about cancer as his wife Christina was diagnosed with a brain tumor not too long after they started dating. Jason was always alongside Christina in her fight taking care of the administration side of things but more so being that rock she so needed. Unfortunately, Christina lost her battle after such a courageous fight for so many years.
The support for raising money for the brain tumor foundation didn’t end there for Jason, myself and many of our friends as we participated in numerous fundraising events in memory of Christina and our friend Venu who also had a similar fight at the same time as Christina. Jason has also taken a passion of his and started to use this as a method to raise money for cancer research and other non-profits. Leverage Wines is a small boutique winemaker in the Paso Robles area which works with a local winemaker to make the best wines possible and also support these organizations.
Following along with Jason’s idea with Leverage Wines, I have also decided to do something similar with my photography. Moving forward a portion from each purchase will be donated directly to the Ocular Melanoma Foundation. In doing so this will continue to help fund the research which is necessary to find a cure, the education so we can detect OM early and also help provide resources to help fund travel for patients to get to the specialists for treatment.
I know this is a lengthy post so if there is one thing which I can ask you to do is schedule regular appointments with your eye doctor. Having your eyes checked annually, which includes dilation of the eyes, will help with early detection of OM.