When you start noticing health problems, when do you go to the doctor? Right away? When the problem persists for a few days? When it’s gotten so bad that you feel like you’re going to die? Well, it you’re Jemma Caprioli from New South Wales, Australia, you’d go before you notice any symptoms!
A decade ago, Caprioli and her brother learned that they carried a genetic mutation for a rare cancer with an extremely low survival rate (20%) that had already claimed the lives of 12 family members. The youngest family member to die from this disease was just 30 years old.
Now 30 herself, Caprioli decided to visit Royal North Shore Hospital to check for any signs of hereditary diffuse gastric cancer (HDGC).
Finding HDGC isn’t as easy as getting an X-ray or looking under a microscope though. Doctors needed to get an up-close look, which meant that they needed to remove her stomach.
“I’m constantly thinking, ‘am I taking out a healthy stomach?'” she told Fairfax Media before the surgery.
“In a strange way, I’ve been hoping and praying that they would find something, some sign of cancer, to give me the motivation to confront this.”
Two weeks after her stomach was sent to a pathologist, they discovered early-stage cancer cells using a microscope.
The cancer had started spreading but it had yet to break through the stomach wall.
“I couldn’t believe it,” Caprioli said in a later article. “Over a month later I still don’t think it has really sunk in.”
Due to the rare nature of the disease, Caprioli’s gastroenterologist, professor Alex Boussioutas, couldn’t say for sure how long she could have waited to seek help, before the cancer spread.
“This is the fundamental problem we have with HDGC,” he said. “Things are happening at much deeper layers, so we’re stuck with no test that is able to identify which patients will [develop the cancer].”
While Caprioli is certainly glad that they found the cancer when they did, adjusting to her new stomach has been far from easy.
Her new system had trouble keeping food down, so she essentially went through a week of starvation. Additionally, surgery put pressure on her ribcage, making it tough to breathe.
She contracted pneumonia in the hospital, lost 15 pounds, and even developed anemia. Yet her biggest challenges were emotional.
“Keeping a positive frame of mind is the biggest challenge,” Caprioli admitted. “People say ‘you look really well and healthy’, but they don’t see me when I vomit after food and the difficulties I have at times with eating.”
She had to adapt her diet to suit her new stomach. She’s now eating a lean, high-protein diet with eggs, quinoa, avocado, and chicken, which her stomach seems to be tolerating alright.
Her body required additional adjustments as well. Caprioli had a regular exercise routine that she performed before the surgery, but it took her seven weeks before she was ready to start exercising again. She can now swim for 10 minutes at a time before experiencing nausea.
She has also started running again and returned to her job at a marketing firm. Slowly but surely, things have been returning to normal for her. Yet HDGC continues to impact every day of her life, as she’s been in contact with many with the same condition. This includes an endurance athlete from New Zealand who has given her a lot of motivation.
It should be no surprise then that Caprioli intends to complete the Mount Kosciuszko Challenge in March alongside her boyfriend, Dave.
The challenge requires her to trek 13 miles up the 7,309-foot-high mountain, raising both money and awareness for Rare Cancers Australia (RCA).
Last year people raised over $140,000 climbing Mount Kosciuszko as part of annual #KosiChallenge, and now registrations…
According to RCA’s co-founder, Kate Vines, many rare cancer patients need to have their legs amputated or carry around colostomy bags. So Caprioli’s ability to compete is nothing short of miraculous!
“I also want to do anything I can to raise awareness about HDGC and other rare cancers,” Caprioli said. “Sharing knowledge is going to make a huge difference for people dealing with these [diagnoses].”
So far Caprioli has raised $385 of her $5,000 goal for the run but there’s still plenty of time for her to reach it. If you would like to support her hike up the mountain, you can donate by clicking the link right here.