Drug trial a new chance for Mindy

Melinda Sullivan, who goes by ‘Mindy’, has heard all sorts of rumours floating around town about how she lost her left leg, the most outlandish of which was that she lost it after passing out at a party.

When she heard that she laughed and sarcastically replied ‘Yeah, they stapled it up and put bandages on it and everything!’

The real reason Sullivan had her leg amputated is because she has aggressive Fibromatosis, a rare cancer-like condition characterized by a large complex ‘desmoid tumor’ that runs extensively through connective tissue in her leg and mid section.

Less than 1 in 250,000 people get the disease.

Since she first started experiencing problems in 2001, Sullivan has had more than 15 surgeries, usually in Toronto, including several biopsies, five attempts to remove the tumour, and an above-the knee amputation of her left leg that was unsuccessful in stopping the tumour from spreading. 

After her amputation, she had more surgeries to put what was left of her snapped leg bone back after it kept piercing through her skin. 

Sullivan has frequent nerve spasms and a variety of assorted pains that come and go, the worst ones feeling like an intense ever-present squeezing of the muscles.

“Imagine giving yourself a Charlie horse where you dig and dig and dig into your muscles until you can’t bear it and then times that by 1,000,” said Sullivan.

Sullivan said her condition is quite severe as the tumour has progressed extensively through her mid section.

Doctors have told her if it reaches her upper body there is a good chance she will die. 

“The tumour is growing larger now with very little room to grow. It creates more pain for her and more nerve disorders like uncontrolled limb movement and mobility is an issue sometimes,” said Sullivan’s husband Chris, who has stuck right by her side and supported throughout her long battle.

Generally, Sullivan moves around using crutches but she can also do some indoor things just by hopping, although her doctors tell her she really shouldn’t.

Sullivan and her husband Chris travel about 15 kilometres downtown and back from their east-end apartment every day.

This can be very difficult in the winter when they don’t have a ride or money for public transportation and Sullivan said this is actually one of the hardest parts of her condition.

“My arms get sore a lot because of all the walking I do,” said Sullivan.

Mindy and Chris are always together.

“He’s a good man. He’s been around with me for everything and he’s seen a lot. I go through it health-wise alone but he still goes through it mentally. He’s with me every step of the way,“ said Sullivan.

Beyond the very important emotional support he also keeps her safe as her condition can impact her health and safety in different ways.

“I’ll be walking past an air conditioner and Chris, who is walking ahead of me, will turn around and I’ll be passed out and he’ll pick me up,” she said. 

The two follow a constant routine of getting up, going to the methadone clinic so they can get their pain medication, then off to Mac’s Convenience Store on Gore Street for “the best coffee in town”, and finally to their friend Christine’s house where they usually hang out these days.

“Its like a ritual,” said Sullivan. 

In the next couple of months Sullivan will participate in a three-year clinical trial testing out a new type of drug that could perhaps slow the growth of her tumour.

This trial has brought her some new hope although she is quite scared because for Sullivan this may be her last chance to battle the disease.

Sullivan said she is thankful for all the help and kind words she’s received from friends and family but she doesn’t want people “feeling sorry” for her.

“I don’t mind help but I don’t want to be pitied,” she said.

Sullivan said she really wants to share her experiences battling this rare disease with the world but that she would need help to write a book and she can’t use technology well enough to reach out to people online – she can’t even download an app on her smartphone.

She said if anyone is interested in helping with anything like this to please reach out to her or Chris if they see them around town.