Featured Survivor Story:
By Vallerie A. Malkin
Fighting advanced stage melanoma in a tutu when you’re a man isn’t the norm, but it’s a heck of a lot of fun. Just ask Mark Williams and Rich McDonald, aka, The Tutu Brothers. They are a dynamic duo in the vein of Batman and Robin who have similar aspirations: They want to save the world, but in this case, the bad guy is melanoma.
Since they met in 2012 at an AIM at Melanoma walk, both men have participated in cancer-centric events across the country, walking in tutus to help raise awareness and money for research. In the long run, the Tutu Brothers hope their efforts will help lead to the cure. In the short run, they seek to give and receive support and make new friends. Sometimes they have had to say goodbye to friends. Through it all, they have never lost their sense of humor.
Rich McDonald, Stage III Melanoma Survivor
A resident of Colorado Springs, Colorado, Rich is a Stage IIIC melanoma survivor who was diagnosed in 2003 with 14 malignant lymph nodes. After a heavy-duty round of biochemotherapy treatments at The University of Colorado Cancer Center, he lucked out.
“The treatments were awful, but I’ve been basically fine with no evidence of the disease ever since,” says Rich. But he struggled with the “hangover effects” of treatment—in other words, a bad case of “chemobrain”—and eventually had to stop practicing law.
Rich is grateful he won the fight this time: “I’m one lucky survivor,” he muses.
Mark Williams, Stage IV Melanoma Survivor
Mark, a resident of Canby, Oregon, was less lucky. In 2007 he felt a lump in his neck near his collar bone. A biopsy and series of CT and PET scans revealed that he had melanoma.
On his 50th birthday, Mark learned via a PET scan that he had 14 tumors in his lungs and esophagus—Stage IV melanoma. He was not expected to live more than a year. Thankfully, an oncologist at Providence Cancer Center had a different take.
In 2008, Mark was treated with a super-high dose of Interleukin2. The protocol was ambitious and required 14 separate doses in just one week. Doctors gave him a two-week break and he resumed the therapy for another week. Mark took a month off so he could be evaluated. The plan was if they were making progress, he would do the entire cycle all over again.
Mark had clean scans in June and September of that year, but in December he had a recurrence. In January of 2009 doctors removed 50 lymph nodes from Mark’s neck region. Then after a month, he took 25 rounds of radiation at 5x the dosing of usual protocols. This shortened the window in which he would have to be doing treatments, and doctors felt he was up to it.
Great news: Mark has been cancer-free since, and still gets a blood test once a year, but no more scans.
When in doubt, put on a skirt
Rich and Mark met on Facebook in 2011, where Rich hosted a blog called “Hotel Melanoma.” They met countless friends who were melanoma survivors interested in connecting about the disease and raising money for research.
A small group of them hatched a plan to meet in person at the AIM Walk in Charlotte, North Carolina, in November of 2012. Mark particularly wanted to meet Rich and a few others, including a young man named Brett Lamb who “seemed like a great guy.” Brett told him he would make an effort to get to the walk in Charlotte since he lived close by.
“We wanted to make a pretty strong fundraising push,” says Rich, who explained that somebody on Facebook had talked about a man who was showing up online in a pink tutu, raising money for breast cancer. Mark offered to wear a black tutu if people would donate to his Facebook page, and Rich decided to join Mark in similar attire: “I didn’t want Mark to publically embarrass himself alone,” he laughs.
Mark arrived in Charlotte with two black tutus, which he had purchased from a very confused cashier; one for him, and one for his new friend, Rich.
“It was a special day,” recalls Mark of the first Walk, because the group finally met in person. Sadly, Mark never got to meet Brett, who died before the Walk took place.
Wearing tutus at a cancer event definitely draws a lot of attention, and the pair had a great time walking around the venue meeting new melanoma friends: “We knew immediately that couldn’t be the one and only appearance of the ‘Tutu Brothers’,” says Rich.
So far the Tutu Brothers have traveled for AIM walks and non-AIM events to Charlotte, North Carolina twice; Houston, Texas; Tuscon, Arizona; Denver, Colorado; and Oklahoma City, Oklahoma.
They also appeared at a pediatric melanoma summit a couple of years ago in Colorado Springs, Colorado, and met AIM’s Director of Community Engagement, Brenda Busby.
Regardless of the type of event or who hosts it, the duo always wears their tutus. Mark has even walked in his tutu alongside his grandson, Cashton, 9, who also dons a tutu to show his support for his grandfather and the cause.
Bad golf, beer, and the good fight
Through their fundraising efforts and hilarious escapades, the two men have become good friends. They try to meet once a year at a Walk or other event. “It usually includes a couple of rounds of bad golf,” jokes Rich.
“I’m pretty sure we will keep on being the Tutu Brothers for as long as we can,” explains Rich. “I just enjoy getting together with Mark, meeting other melanoma survivors in person that I’ve gotten to know through social media, and sharing a meal and adult beverage.”
Rich enjoys the confused looks from strangers when they are out in their tulle skirts, but he is quirky that way: “I don’t know whether we inspire or motivate others, but I think we do at least contribute to the spirit of having fun and celebrating survivorship during these walks.”
According to both men, the walks give them a chance to pay it forward and a chance to socialize with good friends. Mark even has a hip nickname for his melanoma buddies: they are his “melahomies.”
Says Mark: “I think we have given hope to many warriors. Really, that’s all we want is hope.”
Although melanoma is a devastating illness, the men like to keep it upbeat, and that’s not denial: Therapies have improved exponentially and there is reason to feel optimistic, says Mark.
Mark’s favorite song is Journey’s “Don’t Stop Believin’,” and it’s that concept that fuels the Tutu Brothers’ desire to throw on skirts with their sneakers each year.
They have not yet made their Walk plans for 2019 and beyond, but rest assured they’ll show up in tutus until the cure is found.