Monday, April 12th, was the day my life as I knew it changed forever: I was diagnosed with a rare form of cancer. The news hit like a brick thrown from out of nowhere; I had a large, cancerous tumor– in my eyeball. Although I had never heard of this type of cancer, the various doctors I’ve encountered have referred to this particular cancer as “one that’s a very different animal” and “one that’s very hard to control” in terms of spread. I have ocular melanoma.
I’m a 54-year-old empty-nester. My wife Shana and I had already started discussing our plans for how we were going to enjoy the rest of our lives together. All of our bills were finally paid off. We were finally feeling financially stable. Life was good. We had a good thing going. And then it happened.
Beginning in late February / early March I had started noticing a little blurriness in my right eye. I shrugged the problem off, attributing it to irritation because of seasonal allergies. The blurriness persisted, not really getting worse but not showing any improvement. On April 12th I called an optometrist here in Salina. My description of symptoms got me in to see Dr. Brandon Smith as a new patient that very morning. What a new patient I turned out to be. After examining my eye, Dr. Smith told me he needed to refer me to a specialist in Wichita and made an appointment for later the same day. I knew this wasn’t normal.
Accompanied by my wife Shana and our therapy dog Ryder, we headed to see Dr. Paul Weishaar in Wichita. Dr. Weishaar was quick to diagnose what was causing the blurriness: a large cancerous tumor in my eye, a rare ocular melanoma. My mind was spinning. Cancer? It couldn’t be. I couldn’t even feel anything in my eye. Was he sure it was cancer? Of course, he was quite certain it was cancer, and he was extra concerned about the size of the tumor. Dr. Weishaar welcomed a second opinion and gave us references, most notably a colleague in Oklahoma City who is on the forefront of this type of condition, but we were gently reminded that time was of the essence. This cancer spreads. Quickly.
Once we had a few moments to soak in what we were hearing, Dr. Weishaar provided an overview of what to expect and laid out treatment options. We really had just two options:
Option 1 was radiation. We could see the specialist in Oklahoma City who would design a special patch for me to wear over the eye while I was hospitalized for four days. Targeted radiation would likely destroy the tumor but also likely the vision in the eye. And the process would be unpleasant.
Option 2 was not any more attractive: enucleation, the surgical removal of the entire eyeball. The tumor would be entirely gone, provided that it had not branched out of the eye.
We drove back to Salina in complete shock. We reviewed together aloud in the vehicle what we had heard. We called the kids. We petted the dog. We went home that night with a lot to digest. We vowed that we would give ourselves that day to grieve, to cry, to feel sorry for ourselves but that when we woke in the morning that we would be in battle mode.
We didn’t sleep much that night. My wife does really quality research and spent that night getting answers. Ocular melanoma is a rare form of cancer that is centered inside the eye; mine was in the choroid. As a doctor in St. Louis would later tell us, “this is a tough cancer.” The wide-eyed look doctors give when discussing ocular melanoma let us know immediately what we were dealing with. This cancer has a tendency to metastasize, or spread, even after the eye with the tumor is removed. The larger the tumor, the more concern of spread. Initial statistics we saw indicated in 85 percent of the cases the cancer spreads within 3 years, usually to the liver or lungs. More recent statistics we saw indicated it spreads in 50 percent of the cases. Those are better numbers, but they are still not good. All of the data is consistent that if the cancer spreads, the outcome is bad.
But, first things first. Before making any treatment decisions, we needed to determine if the cancer had already spread. Dr. Weishaar wanted me to get a chest CT, an internal scan of my upper body. His office tried to schedule one in Salina because this scan needed to happen immediately. The earliest I could get one in Salina was a month later, so we went back to Wichita two days later, Wednesday, April 14th, for the CT. That was a long night. The next day, Thursday April 15th brought a little good news: no large masses were detected. However, the news came with a bit of concern. The radiologist noted a couple of irregularities, possibly in veins. Regardless, my lungs needed to be watched.
On Friday April 16th we met again with Dr. Weishaar. We again discussed the options. Ultimately, after much consultation, consideration, and prayer, we chose enucleation. I would lose my eye but also, we hoped, the entire tumor.
Things continued to move quickly. Dr. Weishaar was able to get us in the very next Monday, April 19th, to Wesley Medical Center in Wichita to perform the surgery. We were at the hospital by 8AM. I was in surgery by 11AM. By 3PM we were headed home, me minus an eye. Diagnosis to eye removal—one week. I had a good feeling about the surgery that morning. Dr. Weishaar was wearing a Kansas City Chiefs surgical cap with his scrubs when he came in for my pre-op. Anyone who knows me knows how I love those Chiefs.
We were back in Wichita two days later, on Wednesday April 21st, for a post-op appointment. The pressure patch came off, and a temporary cover was inserted. The surgery was a success: the doctor saw no indications that the tumor had branched outside the eye, which was on its way to Oklahoma City to be examined. When asked later about the pathology, the doctor replied flatly, “It’s not good pathology,” as the tumor was determined to be a large, malignant melanoma. The fact that the tumor was contained was the good news; however, while the tumor was now gone, the cancer cells were not. Research tells us that because the cancerous cells which created the tumor are still in my body, there is a good chance they will spread within 3 years.
Amazingly to me post-surgery, I was given no restrictions by the doctor. Two days after having my eye removed I was allowed to go back to my “normal” life again, including driving. I’m not going to lie: adjusting to life with one eye has been quite difficult. Most notably, I have a much larger blind spot on my right side, and my depth perception is not good. I have to be much more deliberate in everything I do, such as even setting a glass down on a table. In an effort to achieve normalcy, I was off work the week of the surgery; otherwise, I have been back full-time and have not missed a beat. By the end of September I will have a prosthetic, which will look exactly like my one good eye. Until then I’ve been rockin’ the pirate look wearing a patch or rockin’ the cool sunglasses look. Dr. Weishaar recommended I not tell a lot of people about the eye because when I get the prosthetic it will look just like the real eye. So much for not telling anyone, huh?
So the tumor is gone. What’s next? Unfortunately, I have simply to monitor and wait for its recurrence. I have been referred to an oncolgist at the Tammy Walker Cancer Center, where I’m seeing Dr. Larry Beck. Dr. Beck ordered a PET scan in late May, which is a total body scan from head to toe, looking for signs of cancer. The scan came back normal. He was pleased to deliver that good news.
In the meantime we have found a way I can be proactive in fighting my cancer and at the same time help out in a much larger research effort to help find a cure. Dr. Weishaar reached out to colleagues across the country and found a clinical trial designed to stop the spread of this specific kind of cancer. I have been preliminarily invited to participate in it. Shana and I have been traveling to the Siteman Cancer Research Center in St. Louis and this week signed paperwork to begin the trial. If another scan in a couple of weeks determines there still has been no spread and all other health conditions are still met, I will start treatments.
This trial is not the typical chemo and radiation. It involves immunotherapy, a new technology that has shown some promise in fighting some forms of cancer. Put simply, using data gleaned from my tumor, my cancer team will tweak my immune system and tell it to fight the cancerous cells that are in my body. Of course, an experimental trial doesn’t come without risk. About one third of those who participate have auto-immune side effects. Those can usually be treated. At least one participant has developed Type 1 diabetes. Though the team hasn’t lost anyone in St. Louis, death is also a possibility. Yikes!
The research team is excited: a couple of drugs, both of which are approved by the FDA for use individually and in different cancers, will be administered in alternating infusions every other week. So, yes, I will have to travel to St. Louis twice a month for the treatments and lab work on Wednesdays. Additionally, I will have scans every 3 months to monitor for a return of the cancer. Provided that I tolerate the infusions and have no metastasis, treatment will go on for a year, 25 total treatments. After that, for at least the next four years I will make trips back every 3 months for lab work and scans.
It’s a LOT of trips to St. Louis. That is a big drawback. But, it could potentially stop my cancer from spreading, and in the bigger picture I am helping researchers in their effort to find a cure for cancer. How awesome is that? No matter what happens I will always have that. My new lead cancer doctor, Dr. Jesse Keller, says the trial has seen some success in some individual cases so far. Unfortunately, the team has not seen the general overall success they are hoping for.
I could not fight this battle alone, without the love and support of my family and friends. My wife Shana has been my rock. Along with staying strong for me, she has been the one to reach out to people every time we have an update. It’s just too emotionally hard for me to do it. She had to make that initial phone call to our kids, Dalton and Madison, because we had to move too quickly to be able to tell them in person. That was the hardest conversation to have to have heard happening—twice. My children have been strong as well. Both live in Kansas City, roughly the halfway point to St. Louis. I suspect I will be seeing a lot of them in the near future, crashing on their couches.
I also could not do this without the support of my colleagues. All of them have offered support and willingness to help in any way they can. One of the first things my General Manager Bob Protzman told me was one concern I do not have to have is about my job. And then there’s Hannah Holt. I can’t even begin to explain the support and comfort she has provided both Shana and me.
We have felt so much comfort in prayer and are humbled by the number of friends from various religions on different continents praying: our Christian friends and Buddhist friends here stateside and my wife’s Muslim friends in Africa. Thank you, thank you, thank you.
This ordeal has made my faith stronger. I have tried to stay positive, and so far have not had a “why me” moment apart from the initial shock the first day. A lot of us seek out a reason why we have been put on this earth: mine is to become a cancer warrior.
Along with the clinical trial, in the near future I’m going to begin an effort to raise funds for cancer research. I have been kicking around some ideas. My goal is to raise a million dollars in my lifetime. If you’re going to do something, do it big, right? No matter what I raise it will go toward the ultimate goal of finding a cure. Stay tuned!
So, why am I inviting everyone into my very personal battle? I have always been honest, in life and on the radio. I have hinted about my health issues on the air and have said I would elaborate when the time is right. That time has come. I have been and will continue to be gone a little more than usual, and this is why. I certainly don’t want anyone to feel sorry for me. Instead, I hope maybe you will be inspired to join me, in any way you can, and help in the effort in finding a cure.
And one final note, please be kind. You never know what battles a person is fighting. To those who comment about the proofreading on my stories, give me a break. I lost my dominant eye, and the remaining eye is working overtime. Oh, and get vaccinated.
