IU Health Simon Cancer Center

Rare Disease: The Eyes Didn’t Hide

Patient Stories

June 28, 2018

At 29, Joey Martin had never been ill. But when his eyes started drooping and his speech became slurred, he was diagnosed with Myasthenia Gravis Disease. Dr. Riley Snook and Dr. Patrick Loehrer Sr. are treating him at IU Health Simon Cancer Center.

His bride wore a knee-length white lace dress, with capped sleeves. She carried a bouquet of red roses and white lilies. Joey Martin stood by her side, exchanging vows. He wore gray slacks and a white shirt. His brown eyes were covered with sunglasses.

Those photos taken on the wedding day of Joey and Alicia Martin, Oct. 11, 2016 portray not only the start of their marriage but the beginning of Joey Martin’s journey to treatment for a chronic autoimmune neuromuscular disease characterized by weak muscles, including those that control the eye and eyelid movement and facial expressions.

Martin’s symptoms began Labor Day Weekend 2016. The guy who stands at 6’3” typically weighs 235 pounds, and regularly works his muscles by lifting weights, had rarely been sick a day during his 29 years. He met Alicia at the gym and the two of them had enjoyed a get-away to Las Vegas. During the get-away, his eyes began to droop and his vision was blurred. They initially visited a walk-in clinic but were sent to a hospital fearing he had suffered a stroke. At the hospital a doctor suspected Myasthenia Gravis Disease.

They returned to Indiana and made an appointment with IU Health neurologist Dr. Riley Snook. Two weeks later, blood work confirmed that Martin had Myasthenia Gravis Disease.

“When they told me what it was, I didn’t even know enough to ask about it. Then when I learned more I just wondered if I’d have it the rest of my life. There is no cure,” said Martin, the youngest of five children in the family of Bud and Andrea Martin. At his worst, his speech was slurred, he had difficulty swallowing and was too tired to work out – something he had been doing since he was 16.

“There were times when my speech was so bad, I’d be talking to my parents and they couldn’t understand what I was saying,” said Martin. “Can you imagine I’d never been sick in my life and then I can’t even talk to my parents?”

***

Martin received Intravenous Immunoglobulin (IVIg) at IU Health North for six hours every two weeks. Alicia Martin remembers one occasion when the pharmacy didn’t have the medication in stock and Randall Yust, COO/CFO of IU Health North transported a pharmacy tech to another IU Health location to restock the supply.

“This is just how things have been with IU Health,” said Joey Martin. “I’ve been treated great. I feel like every person I’ve met is a specialist or has a great reputation and wants to do their best.”

The IVIg treatments are intended to fight diseases in people with weakened immune systems. Eventually Martin was told he needed a thymectomy, an operation to remove his thymus. With the help of steroids, it has been known to result in remission of Myasthenia Gravis Disease. The surgery was scheduled for Nov. 3, 2016. In preparation for the procedure, Martin was undergoing CT scans and x-rays. During the process, his radiologist discovered a nodule on his thymus gland. A biopsy revealed it was cancerous.

With surgery on the calendar, Martin had one more thing on his mind. He wanted to marry the woman who had become his workout companion, the one he had taken on a first date to eat sushi, the woman he loved. They flew to California where they were married in a private ceremony in a small chapel in Palm Springs.

“His family has been going to Palm Springs since he was a kid, I’d gone with them and we’d always walk past this little wedding chapel,” said Alicia Martin. “We knew that was where it would be.”

So a month before Joey’s scheduled surgery, they exchanged vows and returned to Indiana to face the unknown.

“When we first met, we were friends and it blossomed from there. We pretty much became inseparable,” said Alicia Martin. “When he was diagnosed it was scary for me and we knew it would be a rough road ahead but we were in it forever. We knew the surgery was quite invasive as they had to cut through his rib cage to get to the thymus that’s close to the heart,” said Alicia Martin. “Dr. Kenneth Kesler was our amazing cardiac surgeon who did the procedure.” The nodule margins were too close to the heart to be removed. Joey Martin spent seven days in the hospital and three additional months recovering. Soon after, the IVIg stopped working and the couple received the devastating news – the nodule was cancerous. Under the care of Dr. Patrick Loehrer Sr. Joey began radiation treatments at IU Health Simon Cancer Center along with plasma exchange treatments to help with the symptoms of the Myasthenia Gravis Disease.

***

More complications followed. His catheter became infected, had to be removed and was replaced by two ports beneath his skin. Those ports also became infected. In October of 2017, Martin was admitted to Methodist Hospital for five days to be treated for an illness. At that point, Dr. Snook prescribed a medication called Rituxan, with treatments once a week for two weeks every six months.

Martin says the medication along with 14 other prescriptions seems to be working.

On a recent check up, his brown eyes were no longer covered with sunglasses. Martin was back to his average weight and his muscles showed that he had been back to the gym. He still worries about the future but is also optimistic. He enjoys spending time with his friends and Sunday dinners with his family members – most live within five minutes of his Greenwood home.

“My wife and my family have really rallied around me,” said Martin. “Some days it’s hard to think about where I’ve been and where I’ll be but as of now, I hope I will eventually cut back on how often I have the cancer scans, stay on the medicine and hope for no more setbacks.”

-- By T.J. Banes, Associate Senior Journalist at IU Health.
Reach Banes via email at
T.J. Banes or on Twitter @tjbanes.

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