It’s been over a month since I last posted an update.
This isn’t the first time I’ve tried to write this note. In early May, I was enjoying the fact that I was killing this tumor. I, of course, was confident that things were going to go well. I had already made some slight adjustments to my diet….eating more of the things on the good cancer foods that I liked (apples, nuts), and more of the things I didn’t like that I already were a part of my diet (Kale and other dark leafy greens). I had heard that my scans were clean and I was happy that I was kicking ass.
On May 8, I received a call I had been waiting for from the doctors at Wills Eye Hospital. Finally! My Castle Test Results had come in.
The news was not good. My biopsy came back that the tumor was a class 2 tumor.
This means that I am a high risk patient. The statistics show that I have a 72% chance that the cancer will spread within 5 years (50% in 3 years). The most likely destination is the liver. No one knows why it likes to go to the liver. Regular liver cancer is bad enough…this is even more challenging to treat, because it’s mutated eye cancer cells setting up shop in the liver. Patients who have it hit the liver tend to have less than a year to live once it does.
So, what now?
I saw my oncologist for the first time on May 9. He’s a "prove it to me" doctor. On the other hand, he also takes on a lot of clinical trials. So I’ve got to assume he’s trying to look through the overly optimistic stuff and get to the things that have a shot at working. He has one of the two trials that exist for patients in the United States at my stage, where the disease has not spread. The only other study in the world that is actively recruiting is in Germany.
Both of the studies in the United States are being run by two of the top oncologists in the the ocular melanoma world. One is being run out of Columbia, and the other out of Thomas Jefferson in Philadelphia. Unlike the Columbia study, the Philadelphia study only has a single site. I’m fortunate to have a site to go to that is a 30 minute drive from my home.
I signed paperwork to start this trial on May 9. I’ve been waiting ever since. Apparently it’s up to Columbia to approve the 90 page document sent to them from Ohio State to allow me to start. With luck, I’ll take my first dose on May 29.
My wife has been scouring the internet trying to find information about this disease to learn all she can. I’ve been in shock. I’ve not been doing my job of educating myself. My wife has been on my case about it…and I deserve it. Every day I tell her, "I’m beating this thing", but if I’m not educating myself, then how am I?
This started to change two weeks ago. I sat in my car at an office I was visiting for work. I didn’t want to go in. I started browsing YouTube videos from the 2016 Ocular Melanoma "Eye am Not Alone" Conference (http://www.ocularmelanoma.org/eana16). Although I had been checking out the main keynote, I decided to watch a patient presentation. You should watch it. It’s number 6 in the menu. (https://www.youtube.com/watch?v=OEZP5st689Q&index=6&list=PL74Yz-RleyjafgDzOGLlzu0FVqsVUc-dX) Through Sabrina’s talk, I was mesmerized. She was talking about the experimental treatment that she was ongoing and how she was battling to survive. At the point she talked about her son and how she had 8 and a half years to see her youngest graduate high school….I started crying and pumping my fist in the air yelling "Fuck Yeah!" in my car. I’m sure I looked crazy on the security cameras. I sent Sabrina a message on Facebook telling her how inspiring she was, and went on with my day. Later, after a hike on Mother’s Day at Old Man’s Cave, I got a message back from her. We had a brief chat and have been keeping in touch.
Since then, I’ve found other celebrity patients online…I say that with love. I’m a Columbus Crew SC fan. I’ve played soccer since I was 7. Followed the Crew since they existed in 1996. I’ve attended 3 USA-Mexico 2-0 World Cup victories in Columbus. One of the running jokes in Columbus Crew fandom are celebrity fans. They’re just normal people who decide to put way to much time into supporting the team. Celebrity patients are important. They inspire all of us to fight. If 2500 people get this each year in the United States, there’s not a horde of support groups. We need to hear about each other fighting. And hey, if I can get celebrity patient Ryan Gibson (https://www.youtube.com/watch?v=xuhRnD46Kms&index=9&list=PL74Yz-RleyjafgDzOGLlzu0FVqsVUc-dX) to support Columbus Crew as his MLS team along with Bayern Munich, then Crew SC will be winning the Ocular Melanoma stands. What an Aces Radio episode that would be….
So now, I’m keeping up with treatments, both before and after mets arrives. You see, I have to assume mets will happen. Not to be negative, but to be prepared. So I read http://clinicaltrials.gov weekly and search for uveal melanoma. There are cool things going on. The DelCath trials are really hopeful, and MD Anderson in Austin is doing some badass stuff by genetically modifying T-Cells to kill evil cancer cells. It’s an exciting time because people are trying to figure some things out.
The hardest part of all of this has been asking for help. We aren’t wired to ask for help. Every single person I tell about this says to me, "Let me know if you need any help". So far I’ve asked for help once…put the person on the spot, and god bless her, she helped me out on May 9 when I needed someone to help get my kids to school. She was here at 6:10 am, and I think I asked for help around 9:30 the night before. I appreciate everyone asking, I’m not planning well enough to ask for the help.
Some of you are far away from here and can’t help easily. If you keep up with me, you’ll hear about different fundraisers and awareness days. Next year, I want to encourage everyone to get involved with eye patch day. This year is was May 19 and 20th…not sure why it’s not Eye Patch Days. Wear an eye patch, put Cure OM on it. Talk like a pirate. Run in a melanoma 5k…ask for the funds to go to OM. Those of you closer to me…help me try to put on a OM 5k in May of 2018. I’m seriously thinking about it and will need a lot of help to make it happen.
Thank you all for listening.