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Three years after Sheila Levitt underwent a 12-hour specialized surgery at Roswell Park Cancer Institute in Buffalo, she and husband Mark are dealing with what they call “The New Normal.”

The New Normal

Levitts’ lives will never be the same after Sheila battles rare cancer

By Debra Downey, Senior Editor

Sheila Levitt is one in a million in more ways than one.

For husband Mark, she’s the remarkable woman who put a twinkle in his eyes 22 years ago when she became his wife. For the couple’s boys, Benjamin and Barry, mom is admired for her unwavering love and devotion. To her friends, Sheila’s steadfast and loyal, through good times and bad.

But among all these wonderful reasons for being one in a million to her family and friends, Sheila is also unique in the medical world.

She is quite literally one in a million people who have battled a rare type of cancer called pseudomyxoma peritonei, or PMP. The uncommon tumor which often originates in the appendix is known for its production of a gelatinous material in the abdominal cavity that, if left untreated, will eventually build up and destroy vital organs.

Sheila was diagnosed with the cancer three years ago. For six months, the 53-year-old experienced three different areas of discomfort in her stomach and back. One day, after two or three hours of agonizing pain in her back, Sheila knew something was definitely wrong.

Her general practitioner, Dr. Kim McCallum, sent her for a pelvic ultrasound, and on her way back to her Ancaster home, Sheila’s cell phone pierced the quiet of her vehicle. She was advised to go directly to her GP’s office.

“I was immediately frightened,” said Sheila. “A phone call that fast is rarely good news.”

Sheila was stunned and shocked by what Dr. McCallum had to say. She was referred to surgical oncologist Dr. Leyo Ruo at McMaster. There is no cure for pseudomyxoma peritonei, and three years ago in Ontario, the proper treatment options did not exist.

In September 2008 Sheila underwent a 12-hour specialized surgery at Roswell Park Cancer Institute in Buffalo. Dr. John Kane who has done 67 PMP surgeries over a 15-year period, cut Sheila from her rib cage to pubic bone. Her appendix, gall bladder, ovaries, omentum and parts of her bowel and intestines were removed.

During the surgery, Sheila underwent a specialized chemotherapy sometimes referred to as Shake and Bake. A chemotherapy solution is heated to a temperature higher than normal body temperature and circulated inside the abdomen to reach cancer cells not visible to the naked eye.

Sheila returned home to Canada after 12 days in the U.S., only to be stricken by pancreatitis. She experienced nausea and violent vomiting spells. Sheila spent another three and a half weeks at Mac.

Today, almost three years to the day after her surgery, Sheila and Mark deal with what they call “The New Normal.”

Sheila tires easily and suffers from lingering abdominal issues. But although she has good days and bad, she counts her blessings.

“I will never be the same, but I’m here and I’m happy to be alive,” she said.

After the battle with PMP, Sheila and Mark now revel in the little things in life. A year ago Sheila and friend Susan Vaisler started their own business, Rainbow Bridal Boutique on Barton Street East. It’s an accomplishment Sheila couldn’t have envisioned in 2008.

“For almost five months I didn’t drive and could barely get out of bed,” she said. “The fact that I now own my own business is amazing. I’ve come that far that I can even go back to work.”

Mark has also found a new and rewarding career. After becoming a victim of downsizing just prior to Sheila’s diagnosis, Mark was considering a new career.

He wasn’t quite sure what he wanted to do before becoming the pillar of strength at his wife’s side.

“Critical illness and disability insurance were just stuff. Now, it’s real. It has opened my eyes to a lot of things,” said Mark, a life insurance and investment advisor who specializes in critical illness and disability insurance.

The couple is also embarking on a campaign to share their story with the general public, doctors and others who unknowingly suffer from PMP.

Sheila said PMP is commonly misdiagnosed, mistreated and misunderstood by physicians. Because it’s rare, doctors often find it by accident while dealing with problems like infertility. Many times, the cancer has spread too far to be successfully treated.

Sheila was one of the lucky ones. Her cancer was detected early by a physician familiar with the disease.

“People, women in particular, really have to take note of what’s going on in their body, no matter how insignificant it feels.” said Sheila. “I was quite fortunate in that Dr. Ruo was familiar with the cancer.”

Those diagnosed with PMP also now have an option north of the 49th parallel. Along with the surgery now being available in Calgary and Montreal, Dr. Andrea McCart, assistant professor at the Toronto General Research Institute, has received government approval to conduct a limited number of surgeries to evaluate their success through follow up. Seven surgeries have been conducted so far during the trial program at Mount Sinai Hospital in Toronto.

“We’re hoping to educate medical professionals, to let them know the surgery is available for patients,” said Sheila.

She also hopes to do whatever she can to raise money in the continuing battle against PMP and other cancers.
In her business dealing with happy occasions like weddings, customer can purchase a pink garment bag, with the proceeds going to fight women’s cancers.

And meanwhile, the Levitts are doing their best to continue to enjoy life in “The New Normal.” Nothing will ever be the same, but without a doubt, family and friendships are just a little bit sweeter.

“Mark was with me every step of the way,” said Sheila. “It’s so important to have an amazing support system in place during something like this.”

The Ancaster resident also doesn’t get too upset about little things.

“I try not to sweat the small stuff and I try to pass that on to the rest of the family. I have good moments and bad moments, but, overall, I’m good.

For more information about Dr. McCart’s trial program, visit http://www.mshfoundation.ca/Page.aspx?pid=1575

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