Rick Kaitz had run three Boston Marathons and swore he’d never do another. “Training in winter in New England is awful,” said Kaitz, 58, a Boston attorney. “It’s so cold, icy, and dark.”
But on April 15, he was at the starting line in Hopkinton, this time racing for his wife’s life.
Initially told she had benign fibroid tumors, Erica Kaitz was diagnosed last year with uterine leiomyosarcoma, or LMS, a rare and aggressive cancer of the smooth muscle cells. She has an even rarer subtype that affects 50 to 100 people a year in the US. The couple consulted the top three cancer institutes on the East Coast: Dana-Farber, Duke, and Memorial Sloan-Kettering in New York.
“We had three different recommendations for treatment,” he said. “It became clear that the top doctors don’t know anything about it.”
Because “orphan diseases” affect so few, there is little funding for research and few drugs manufactured. Kaitz knew he had to act fast. An athlete who has participated in many charity events, he figured his best chance of raising money would be through “Erica’s Entourage,” a team of friends who would run in the Boston Marathon for her, or ride in the Pan-Mass Challenge — or both.
He named it the Erica Kaitz LMS Research NOW Fund (www.ericasjourney.com) at the Dana-Farber Cancer Institute. All proceeds will go to research.
The night before the Boston Marathon, 19 supporters of Erica’s Entourage attended a team dinner at Trade on Atlantic Avenue. Spirits were high.
On Marathon Monday, it was 38 degrees at 6:45 a.m. when Kaitz left the couple’s condominium at the InterContinental Boston. At 10:45 a.m., he and his teammates — law partner Bethany Bartlett and Tim Simonson, who is married to Erica’s cousin — took off in the last wave at Hopkinton, with the other charity runners.
Kaitz paced himself. He’d told his wife that he’d be at mile 20 between 2 and 2:30 p.m, and he was. Erica was waiting with a hug, a Gatorade, and a caffeine gel for her husband.
“He’s amazing,” she said. “He can tell me exactly where he’s going to be in a race, and when, and he’ll be there.”
The same can be said of their marriage. They met in 1986 on a blind date. “We were engaged in six weeks and married in a couple of months,” said Erica, 52. Their daughters are 21 and 23.
The couple has taken a team approach to her cancer, which they discussed on a recent day as Erica was undergoing chemotherapy at Dana-Farber.
“I focus on my treatment and I also do a tremendous amount of integrated therapies, such as Qui Gong, acupuncture, and meditation,” she said. “Rick focuses on the LMS part of it, figuring what’s out there in terms of meds, reading the literature, keeping in touch with the LMS community, to push our project ahead.”
Indeed, Rick Kaitz uses the word “we” when he speaks of her cancer: “We elected to have the second surgery right after the Pan-Mass Challenge last summer.” He has gone to all of her appointments, and considers himself lucky to have a flexible workplace at the firm of Sherin and Lodgen that allowed him a medical leave; now he works part-time around her schedule.
Billy Starr, executive director of the Pan-Mass Challenge, went to junior high and high school in Newton with Rick, and Erica has ridden, volunteered, and, since 2000, worked for the Pan-Mass Challenge.
Starr is impressed with the couple’s perseverance under fire. “Ricky hasn’t lost his focus, his purpose, even his sense of humor,” he said, noting that Erica’s Entourage has already raised $95,000 for the bike-a-thon, which isn’t until August.
At the Marathon, after he and Erica hugged, Kaitz was feeling sore all over. But he knew the worst was behind him. “The last mile is actually fun, because you know it’s over,” he said.
Only this time, it was neither fun nor over. At 25.7 miles, half a mile from the finish line, Kaitz began to notice “weird stuff.” First, there were the ambulances going up Beacon Street.
“It wasn’t hot out, and I wondered what that was all about,” he said. “The next thing that was definitely very weird was, after Kenmore Square, there were medical volunteers in white jackets handing out Mylar blankets. Usually, they come at the end, at the chutes. You get the water bottle, you get the blanket, and then the medal, that’s how it works.”
Then he saw other runners walking the wrong way on the course. Finally, the pack came to a standstill. He heard the chatter: an explosion at the finish. “My first reaction was that it must be a manhole explosion,” said Kaitz. “The thought of a terrorist attack at the Boston Marathon was not high on my radar screen.”
It took Kaitz what seemed like forever to make it back to the Boston Common Hotel on Trinity Place, where he and his teammates had booked a room for a shower and a quick massage.
Meanwhile, Erica had arrived home and was in the lobby of her building talking about what a great day it was when someone mentioned the explosion. She was worried: “I needed to hear Rick’s voice.” But not until 5 p.m., when he arrived at the hotel, was he able to reach her.
“I felt very fortunate to wake up Tuesday morning with him beside me,” she said.
When her chemotherapy is over this summer, she may have experimental treatments to keep the tumors at bay while researchers race to find more options.
“It’s an incurable disease, and we are trying to do everything we can to give benefits not just to Erica, but to others with orphan diseases,” said Dr. George Demetri, director of the Center for Sarcoma and Bone Oncology at Dana-Farber. His lab is one of the few in the world working on LMS.
Rick Kaitz knows that the money he’s raising is small compared to the multi-billion-dollar “war on cancer,” but medical researchers often labor in small laboratories supported by small grants. Kaitz has raised about $200,000 from the Marathon and a half-marathon he did in October, but the Pan-Mass Challenge will be his biggest effort.
“We have 80 people signed up for our team, and about a half dozen other teams supporting Erica’s fund,” he said. “We should raise a million and a half from the PMC.”
The irony that they now need the PMC and Dana-Farber isn’t lost on the Kaitzes, who between them have raised $400,000 over the years for the effort. Rick has ridden 20 Pan-Mass Challenges, Erica half a dozen. Last year, their daughter Alyssa rode, and she will ride with her father again this year.
Erica has worked for the PMC most recently as the event planner. In fact, she planned this year’s Heavy Hitter Dinner, held the Friday before the Marathon, which honors the biggest fund-raisers for the two-day cycling event. The dinner always features a patient talking about how the PMC has helped. In previous years, she’d helped line them up.
This year, she was the speaker. She spoke about how she had been coming to the Dana-Farber for years, first as a caregiver for her mother who had cancer, and later as a donor and volunteer.
“This year,” she said, dabbing away tears, “I’ll be donning a new hat. It will be my proudest PMC hat yet, that of a survivor.”
She got a standing ovation from the audience, and a hug from her husband.