It wasn’t long after her son was born in August of 2021 that Michelle Hughes was diagnosed with an ultra-rare sarcoma cancer.
“My first oncologist told me I have three years,” Hughes said.┬а
It’s called Epithelioid hemangioendothelioma,┬аor EHE for short.┬а
“It’s a rare, but also very unique cancer and┬аit affects people very differently,” Hughes said. “There are some people who get diagnosed and pass away in a matter of weeks or┬аmonths, but there are some that have lived for twenty years.”
When she was first diagnosed,┬аthe doctor hadn’t┬аheard of EHE.┬а
“It’s very hidden, it’s very hard to see, ” Hughes said.┬а“You can’t see it on ultrasound per se. I┬аhave cancer in my leg, liver, innumerable tumours in my lungs.”
Since the diagnosis in 2021, Hughes said┬аshe is finding hope and figuring out how to manage the unpredictable cancer that doctors still don’t know a lot about.
“I don’t need to be defined within a three-year lifetime,” she said. “I can do this for years and years and there’s hope there.”
Years without answers
Hughes had been experiencing pain on and off for years and visited dozens of different doctors looking for answers.
“It was really frustrating and really difficult experiencing the pain over the years,┬аbut I was living my life,” she said.┬а“It wasn’t like I was in constant pain 24/7.”
It wasn’t until the young mother of three collapsed, only weeks after having her son, Hatton,┬аthat led┬аto weeks of testing тАФ and after many┬аblood tests and┬аnumerous┬аbody scans, she’d eventually get┬аher diagnosis.┬а
Since that time,┬аshe has new hope┬аfor how long she will live, and┬аis doing what she can to keep the numerous┬аtumours throughout her body stabilized.┬аHughes gets scans every three months.┬аShe has been taking experimental medication and, so far, there are no new tumours and no new growth.┬а
“I’m kind of thankful that they didn’t find it six years ago, because I wouldn’t have my [children], my Juliet, my Adeline, my Hatton┬атАФ┬аI’m a mom and that’s my purpose,” she said.
It’s a really, really difficult thing to comprehend that someone can have sarcoma and be flourishing.тАФ Tyrrell Hughes
She and her husband┬аTyrrell, or Ty,┬аneeded┬аfertility treatments and said it was a heart-wrenching journey.┬аBefore they had their three kids, they┬аlost a son who was stillborn, and Michelle had a miscarriage.┬а
Now, they cherish their role as parents.
Hughes said she remains┬аfocused on nutrition and exercise, running almost daily┬атАФ pushing two kids in front of her┬аand pulling one behind in a specialized stroller attached to her waist.┬а
“She is getting a lot of feedback from her body, that exercise and nutrition that she is paying attention to is paying off massively,” her husband Ty said. “It’s a really, really difficult thing to comprehend that someone can have sarcoma and be flourishing.”
Michelle fully admits she didn’t like exercise at first, or thinking about her diet in her “past life.” That perception has drastically changed.┬а
“Exercise is what I’ve quickly learned is my true medicine тАж┬аI do it to feel alive and it feels amazing,” she said.
Being active helps to reduce chronic inflammation for her, which can be a source of pain. She is also very focused on being a mom.
“I believe he is here to keep me busy, he is here to show me that cancer does not define me, that ‘mama’┬аdefines me.┬аAs everyone knows when you have an infant: life doesn’t stop,” Michelle┬аsaid, laughing.┬а
A rare cancer and an abundance of hope
Michelle is under the care of Dr. Abha┬аGupta,┬аa medical oncologist┬аat the Princess Margaret Cancer Centre in Toronto.┬а
Gupta said EHE is “exceptionally rare,” noting that sarcomas make up one per cent of all cancer cases and EHE cases are less than one per cent of those sarcomas.
She said she is impressed with how Michelle is doing.
“You would never know watching her running down the street with her baby, or, you know, just taking care of her family┬аand going about her day to day┬аthat she has, on paper, Stage 4┬аcancer,” said Gupta.┬а
She said there is an unpredictable nature to┬аEHE and that Hughes shows that.┬а
“We are learning about the differences and the biology of different EHE subtypes and, thankfully, Michelle has the kind which is associated with a more indolent┬аcourse,” she said. “Absolutely, people with EHE тАФ┬аeven if they have lesions in their lungs and liver тАФ┬аcan live, hopefully, for decades,” said Gupta.
“It is possible that EHE may not be the cause of Michelle’s death in the future, it is just something that she has to live with.”┬а
Holding on to the motto ‘just live’
Michelle holds fundraisers of all kinds, from bottle drives┬аto making Christmas ornaments,┬аto help fund research. She also writes regularly on her Facebook page “My Journey to Just Live”┬атАФ a motto that’s close to heart.
“Everyone can apply┬а‘just live’ to their life,” she said. “Time is a gift, nobody knows when their time is coming тАж my mindset has changed,”┬а
Michelle said┬аit is possible to thrive even with an incurable cancer, adding “I don’t need to be defined within a three-year lifetime, I can do this for years and years and there’s hope there.”
For her husband Ty, that means many more milestones to come for Michelle.
“I foresee her being at all of our children’s graduations,” he said,┬а“walking our daughters down the aisle, and her and I spending the rest of our lives together.”
