I’ve been seeking "normal".

I know what my new normal is. I have a very dangerous cancer floating around in my body. I’m killing the tumor, but there’s a very high risk that it comes back and starts growing where it shouldn’t. Yes, I am on a clinical trial to try to delay this from happening.

But this isn’t the normal I was seeking. I was seeking normal from before.

I realize this is a fools errand. But I am not convinced it’s foolish, as I understand that normal isn’t something I will ever find again. So why seek it?

During the past three months I’ve gotten back to being more aggressive with my life. There were times when I would avoid activities or opportunities because they were inconvienent.

I blame my friends from college. A crazy number of them drove 2-3 hours into town or even flew in from around the country to have a reunion of sorts. Yes, my cancer was the excuse, but this was something I should have been doing all along. I should have been seeing my friends more often, even if only for a few hours. We had a tremendous time at a Columbus Crew match, and enjoyed a few hours together. I was exhausted by the end of the night due to my trial medication and the heat of the day, but it was all worth it.

What happened next? We had an opportunity to go to Orlando for a few days. We were fortunate enough to be able to schedule it during some teacher in service days. The kids only missed two days of school and we enjoyed some family time. Yes, the heat made me grouchy and tired, but we all worked through it at had a great time.

I had an opportunity to go on a Columbus Crew fan podcast. I told stories about when I was really hardcore into the team in its early years. I also explained ocular melanoma and encouraged everyone to get their eyes dialated. I also got to meet World Cup legend Frankie Hejduk. I was exhausted at the end of the night, and was the only sober person…​but that’s trial medication for you, alcohol tastes like garbage.

When Hockey Fights Cancer Night hit Nationwide Arena, the radio broadcasting team asked for tweets about how cancer had impacted their lives. I told the story about how I watched Blue Jackets playoff games from the hotel room in Philadelphia. I linked to the posts here. I later learned that the lead radio broadcaster had lost his father to cutaneous melanoma. He was touched by what I had written. He shared my story to the Blue Jackets fans, and I noticed several new visitors here.

My appearance on Aces Radio, and CBJ 30in30, reached thousands of people. Most of whom have no knowledge of cancer of the eye. I cannot express how much joy it brings me to be able to share my story and hopefully help others.

Just three weeks ago, I went to the dentist. My hygenist and I were talking about my medications, and I had to bring up my trial. She mentioned that she had just gone to the eye doctor and they saw a freckle. They mentioned that they would have to watch it, but they really didn’t express why they needed to. I looked at her and said, listen, for as long as I am around, I am going to ask you about that freckle. If that thing starts growing, you let me know, and I will get you to a specialist. She looked shocked. I said, listen, you have a gift. You know its there, and even though the chances are low that it becomes something bad, you know that it can. If you notice something change, do not think its nothing. Get an expert to look at it.

And that’s when I began to realize, I’ll never have normal again. Old me would have never been so blunt with a complete stranger. New me knows its part of my humanity to educate. So, no, I’m never going to find normal again. But I’m going to keep talking and I’m going to live life aggressively. Normal isn’t an option anymore, even if I may long for those calmer days.

My mind loves to relate experiences to things we’ve seen on television. And this feels like playing a classic 1980s game show.

Answer silly trivia questions, win spins. Yell "No Whammies!" Push the button to stop and hope you win something. Most folks want to win some things and then pass their spins onto another contestant so they can land on the Whammie and lose.

These scans are a lot like that, except there are no other contestants. You’re not allowed to pass your spins. Every scan you’re hoping it doesn’t land on the Whammy of metastasis.

Knowing this, you do whatever you can to increase your odds. For me it’s a clinical trial, abstaining from alcohol, drinking as much fluids as I can, changing my diet so I eat more fish and a lot less red meat (none).

It’s my way of being Michael Larsen.

If you’ve never read Larsen’s story, you should. (https://priceonomics.com/the-man-who-got-no-whammies/) He beat the game. Every little thing I adjust in my life is about trying to be like Larsen memorizing the game board.

With unlimited spins, the only thing I can do is avoid the Whammy. Even when the spins slow down to every 6 months, all I can do is avoid the Whammy.

In the end, although we all hope to be like Michael Larson in the short term, in the long term we don’t. Larson passed away from a battle with throat cancer.

This is all great news. However, the vision in my eye has gone south. I felt like it was, but really couldn’t tell due to the deterioration over time. So the next step is an anti-VEGF treatment. Basically, the radiation which is killing the primary tumor is also causing blood vessels to close. That means the eye doesn’t get the right about of blood supply…​which means new blood vessels grow. The new blood vessels basically hose your vision. An anti-VEGF treatment is supposed to stop the cascading effect by reducing leakage from the damaged blood vessels and stop new ones from being created.

Hopefully my layperson explaination is at least 80% correct. Either way, I’m hopeful this will help my vision at least stabilize while the tumor continues to die and my retina detachment continues to shrink.

I’ve now been through two complete cycles of crizitonib. I’m dealing with three side effects at the moment. Fatigue, diarrhea, and swollen feet and ankles. Out of those three, the most annoying is fatigue. I can deal with the other two. Drink a lot of fluids and elevate your feet. Fatigue you can’t do much to fix, other than rest. I’m hopeful that I can start a simple exercise routine that will let me build my stamina up without knocking myself down too much.

I’m approaching the end of my 2nd cycle on my adjuvant treatment. This means I have only 41 more weeks to go!

Some folks have asked me what the chemo is like. It’s going to be different for everyone. Probably the most interesting thing is the fatigue. This is due to the chemo messing with your system to suppress the growth of the bad stuff. For example, I went for a nice walk in the park with the dogs and my wife today while the kids were at cross country practice. It was 85 degrees during my hour walk. That heat zapped my energy. Even after dinner I still feel fatigued.

I believe this means the chemo is working.

One more interesting thing happened to me this weekend. This is called buring the lede. I left on Sunday around 9:30 to pick up my daughter from a sleepover. On my way out, I saw my neighbor across the street. We hadn’t had a long conversation since before my treatment in April. I asked him what was going on with the landscaping crews yesterday and he had asked what I had been up to. I told him, that was a loaded question. Of course, he asked, and I told him that I had cancer. After a bit, he asked me what kind of cancer. When I told him ocular, I saw a face I had never seen before when speaking about this disease. It wasn’t the "I have no idea you could get cancer in the eyeball face". He said, "I know something about that. Ten years ago, they saw something in my eye. I ended up going to a specialist who told me I needed to see a different specialist on this. It looks like melanoma."

Jaw. Meet. Floor.

He continued, "I asked them where to go, and they reccomended I see a doctor down in Cincinnati. So I went there. When I got there I was ready to have the eye removed. Instead the doctor said he wanted to take a biopsy first, because he couldn’t tell if it was cancerous or just a nevi. The biopsy came back inconculsive." For the past ten years, he’s been having eye scans done to see if it will begin to look cancerous. Doc told him that he thinks it will turn eventually.

I must be honest, I hadn’t heard of just biopsy before you apply the plaque. It’s now a question for my doctor. Not because I wish I hadn’t had the plaque done, but because, it’s interesting. And, I wanted to let her know she might have a new patient since his doc in Cincinnati is going to retire.

There are other ocular melanoma patients around me. Some a few towns over. But I didn’t think that several years ago, I’d happen to move across the street from someone who knows something about what I’m going through.

On May 30, I took my first dose of a drug called crizotinib. It’s an oral chemotherapy used in specific types of non-small-cell lung cancers. However, tests have shown that it has the potential to help kill ocular melanoma cells by teaching the body how to find them and destroy them.

A good write up for lay people on this trial can be found at Memorial Sloan Kettering. The gritty details, for my friends who are doctors can be found at ClinicalTrials.gov.

It’s been three weeks of my first of 12 four week cycles. So far so good. I enjoyed a great vacation to Niagara Falls, Toronto and Cedar Point just 3 days after starting the trial. Fatigue and staying hydrated were the only issues, but it was easily managed with the temperatures in the mid 60s to mid 70s. I did have a challenge this weekend with the heat rising above 90 and have learned that I really need to take it easy. Do bursts of yard work followed by air conditioning and hydration. 30-45 minutes outside, 30-45 minutes inside when the heat is bad.

I’m excited about this trial. There’s only three in the world for anyone at my stage. The lead researcher, , has a slide show here that suggests this trial shows a lot of promise. For the lay person, the mouse slide, slide 10, is particularly exciting. I’m sure my doctor friends can message me with more details.

I’m very lucky that I do not have to travel for this trial. Ohio State has the trial available and I’ll be down there this time next week to pick up new medicine and get more blood work.

You’ll notice that this is no longer a GitHub Gist, but is instead a blog post. Yes, I still have the old Blogger site at TwoFourOne, but I don’t update it, and this subject deserves it’s own space separate from that.

So I decided to stay nerdy and use the HubPress platform. It’s a browser based platform written in Vue.js. It does what it needs to do, and it’s not WordPress. Not that there’s anything wrong with WordPress, I just didn’t want to end up there yet.

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.

On Easter Sunday, I finally began to feel the fatigue of the radiation. I had set my alarm for 7:15 am to eat breakfest, but didn’t actually get out of bed until 8:45. I then ate breakfast and promptly fell back asleep at 9:30 only to be woken up by my mother who called me to make sure she knew what to give my wife to bring over to the hotel for Easter dinner.

Dinner was so tasty, by the way.

On the 17th, the plaque was removed from my eye. We returned to my childhood home and I promptly fell asleep for 3 hours.

On the 18th, we drove home. We took our time, stopping at Hershey’s Chocolate World for the kids and just so my wife could catch her breath. it’s a long drive to Columbus, over 500 miles when you avoid driving through the very busy roads in Philadelphia. We arrived at home about 12 hours later taking 3 hour long stops.

Since then i’ve been resting.

Yesterday, i was able to take the patch off of my eye. It’s quite sore, but nothing that tylenol can’t manage. I put an ointment in the eye to fight infections and another to dialate the eye at night to help rest the eye muscles during sleep.

I’m still tired. Physical activity must be limited and I need to rest between doing simple chores around the house. I’m not allowed to drive until Monday, and this must be why.

Several of you have asked, can I see out of my eye? The answer is yes, and the vision is still messed up as it was before treatment. That’s expected, as it will take 3-6 months for this tumor to shrink so that my retina has a shot at reattaching. I’ll learn more as time goes on.

Thanks again for all the wellwishes and support. It’s amazing.

It’s been a little over 24 hours since I checked into a hotel in Philadelphia after my first surgery.

On Sunday, I flew out to Philadelpha. My parents picked me up and I slept in the bed of my youth.

On Monday morning, I was at Wills Eye Center at 7am. I was trying to register, but the staff didn’t know I was supposed to be there. I guess that’s what happens when the doctors running the place make promises over the weekend. Remember this when your upper management makes a promise that you don’t know about. The staff was awesome trying to help me out. They didn’t publically bitch to me about how the docs didn’t communicate well.

It took a good hour to get Ohio State to send over all of the scans and pictures over to Wills. Some of them were useful, some were not. Wills basically did the same pictures and scans with different equipment over a 10 hour stay. Yes 10 hours. No joke.

We left Wills with a plan for surgery on Thursday and a need of getting blood work done and a physical. That’s sort of tough since I’m not in Ohio. Fortunately, I was able to get these tasks done on Tuesday with the help of Wills staff.

Meanwhile, my wife was driving from Columbus to Philadelphia on Tuesday. She couldn’t have had worse luck. it took her 11 hours because of rain in Columbus not getting her to Zanesville until 9:15. A good hour delay. Accidents on the turnpike in Philly also killed a good hour of time. She got to the house at 6pm with the kids and dog.

One thing that was very smart was finding a way to bring the dog. He’s 11 months old, and although it was a long miserable anxious trip for him, he’s enjoying the larger yard at Grandma’s house and the kids are enjoying spending time with him. I also enjoyed walking him with my wife.

Wednesday, we relaxed as best we could, since Lori and I were getting up at 5 to drive into Philly and check in for surgery by 7 am. Before I knew it, I was meeting with the docs, and wheeling into surgery. I dont even remember counting backwards.

We then drove over to the hotel, got checked in, and sorted out. She grabbed my meds from CVS and spent the night here, which was nice, even though she had to stay far away.

The docs from Wills stopped by at 4 to see how I was doing and answer questions.

Otherwise, I’m treating this like a campout. This thing gets taken out early on Monday morning, and then the plan is to drive home early Tuesday morning.

Be well!

Yesterday, Friday 4/7, I spent about 6 hours at Ohio State’s Havener Eye Institute (http://eye.osu.edu/). I got some awesome scans and pictures of my eye done. I also found out the bastard was quite a bit larger than I thought. Also, much like the scene in Predator, it was one ugly SOB.

I met some awesome doctors who, unwillingly, made me feel like I had accomplished little in my career. My doc is just 2 years older than me (hooray public records) and she is one of 4, people in the Ohio who know what they are doing with this sort of cancer.

And all I’ve done is write software. Yes, I’ve writted software to help people manage their finances and help customers, but not to save lives. But I digress.

They came up with a plan, which was similar to what was outlined before. They would order a radioactive plaque. What’s interesting is how it’s placed on the eye. It will be placed attached to the outside of the eye, where the tumor is. So basically it won’t be visible to anyone, because it’s effectively by the eye socket. This link explains this quite well (https://eyecancer.com/eye-cancer/treatments/eye-and-vision-sparing-radiation-therapy-for-intraocular-tumors/)

So at OSU, they said, surgery to put this thing in on Thursday, take it out on Monday. Should be back to work two weeks later. Wow! Except, they couldn’t start surgery until mid-May due to doctor schedule and the amount of time to get the plaque. I asked if there was any way to move faster.

So the docs at OSU sent a note to Wills Eye Center in Philly (https://www.willseye.org/ocular-oncology-service). Wills is a good choice for me because of family across the river in NJ. It also happens to be "the" place to get this procedure done.

Today I got a phone call around 5pm. I’ve been accepted into Wills. Show up at 8am on Monday. I used what little frequent flyer miles i have to get a one way ticket to Philly. My wife and kids will drive out on Tuesday.

This adventure keeps getting crazier. But I said before, I’m going to kick this bastard’s ass. I really appreciate all of the support and well wishes.

I will continue to update as I have time. Thanks again.

Yesterday, I went to the eye doctor because of messed up vision in my left eye. They told me I had a detatched retina and needed emergency surgery. I ran over to the surgeon and they began to examine me.

They told me it’s not a detached retina, but an ocular melanoma. You can read up on the details here: http://www.ocularmelanoma.org/disease.htm

Basically I have a tumor at the back of my eye. Fluid is leaking into the eye which is causing the vision problem.

I don’t know how long it has been there, but it wasn’t found at my eye exam in July of 2016. Tomorrow I go in to determine if the bastard has spread beyond my eye and determine a course of action.

Needless to say, I’m a bit on edge.

However, I’m determined to kick the living hell out of this thing.

This is just the easiest way to let everyone on here know.

Thanks for listening.