While many of us were contemplating what we are thankful for this Thanksgiving, Jessica MacKenzie was just thankful to be alive and well.
“I’m just thankful that I’m cancer-free and that I’m helping to spread awareness for this deadly disease,” she said.
MacKenzie was recently diagnosed with a rare form of stomach cancer called Hereditary Diffuse Gastric Cancer. According to the No Stomach For Cancer organization, this particular form makes up only 1 to 3 percent of all stomach cancer cases. Although it is not very common in the Unites States, it is the second deadliest cancer worldwide.
A Rough Realization
Had you met Jessica MacKenzie over a year ago, you would have met a typical Virginia Tech sophomore with no worries about cancer. When MacKenzie returned to her home in New York for winter break in 2011, however, everything changed.
MacKenzie lost one of her aunts to gastric cancer in 2010, but at that time, the family had no detailed knowledge of HDGC. Through death came awareness.
In September 2011, MacKenzie’s father, Bob, was tested for the CDH1 gene mutation that causes HDGC along with his two remaining siblings and his mother. All came back positive except for one of his siblings. Afterward, Bob MacKenzie, his sister Debi and their mother were diagnosed with HDGC.
When Jessica MacKenzie went home for winter break three months later, she was filled in on the family’s genetic discovery. They had waited to tell her so the news would not affect her performance on her final exams.
“I knew right away that I wanted to be tested for the mutation,” MacKenzie said.
She returned to Tech for spring semester, however, and waited until this past summer to be tested. In June of this year, MacKenzie learned she had tested positive for the CDH1 mutation.
“I was a lot more relieved when I tested positive,” she said. “I didn’t want to live in the dark anymore.”
A Detrimental Disease
HDGC is caused by the CDH1 gene mutation. This gene encodes for the protein E-cadherin, which normally allows cells and tissues to adhere to each other. The mutation of this gene causes a disruption in the protein’s function, which often results in cancer. Currently, it is still unknown exactly how the CDH1 mutation causes gastric cancer.
HDGC is difficult to detect because it does not form a visible mass. Instead, the cancer is diffused amongst the stomach lining, making it difficult for an endoscope to detect. Many cases are not discovered until the cancer has reached a later stage, and sometimes it is discovered too late.
Female carriers of the CDH1 mutation also have a 60 percent lifetime risk for lobular breast cancer.
The only current cure for HDGC is a gastrectomy, the total removal of the stomach. MacKenzie’s father, aunt and paternal grandmother had their stomachs removed in March.
Living With Uncertainty
Despite learning that she has the CDH1 mutation, Jessica MacKenzie returned to Tech this fall with the plan to have a gastrectomy five years from now. But, living with the possibly of having cancer made focusing on her education difficult.
“My depression just got the better of me, and I couldn’t get out of bed in the morning,” she said. “I was just really sad, and so I ended up withdrawing and coming home.”
Rex Lacy, MacKenzie’s boyfriend and junior computer science major, stayed by her side as she dealt with everything she had learned in the past year.
“She is one of the bubbliest and most genuinely happy people I’ve ever seen,” Lacy said. “But she definitely knows how to put on a face, and that face is what she puts on when she’s trying to mask the pain of losing her aunt and going through the possibility of having cancer.”
After she was told about HDGC over winter break in 2011, MacKenzie and her parents told Lacy that they would understand if he wanted to leave the relationship. Lacy chose to stay.
“I was just like, ‘Are you kidding?’” he said. “I’m not just going to drop her because maybe things will get hard. She’s worth staying with, so I’ve always just wanted to do what I can to help her get through this.”
MacKenzie’s roommates Annie Wong and Kim Williams were also major sources of support.
“It was hard at times, but she has taken it really well considering,” said Wong, a junior computer engineering major. “I don’t know how I would have reacted to something like this. To have cancer at 20 is really scary and overwhelming for anyone.”
Wong said that living in the dark was what bothered MacKenzie the most.
“It was really scary because none of us knew what was going to happen,” Wong said. “It was really just the fear of the unknown and wondering what’s going to happen next.”
After MacKenzie withdrew from school for depression, she went home and had a scope done as a precaution. Surprisingly, two spots of cancer were found in her stomach.
“I kind of knew something was wrong, but I didn’t know what,” she said. “Now, obviously I know.”
She scheduled an appointment to have a gastrectomy in late October at Sloan-Kettering Memorial Cancer Center in New York, but the surgery was postponed due to Hurricane Sandy.
MacKenzie had her stomach removed on November 8.
“But how do you eat?”
According to her Youtube channel’s introductory video, this is a question that Jessica MacKenzie is frequently asked after revealing that she no longer has a stomach.
“I have to teach myself how to eat again,” she said. “You have to take really small bites, and it’s really tedious. It takes me like an hour to eat an Eggo-waffle, which is kind of pathetic, but you have to chew your food a lot.”
Jessica MacKenzie’s father, Bob MacKenzie, expressed that he has been doing well since his gastrectomy and can now eat a larger variety of food.
“Life without a stomach isn’t so bad; you eat a lot of small meals,” he said. “I used to have a lot of acid reflux before this and I don’t get it anymore, so in some ways I can eat more of a variety of things than I could before.”
Not everyone recovers as well as Bob MacKenzie has, however. His sister Debi has found it harder to maintain a healthy weight and has recently been put on a feeding tube.
As for Jessica MacKenzie, her recovery has been steady.
“She has been handling it like a trooper, she’s been fantastic. She’s strong,” Bob MacKenzie said. “For me, it’s been the greatest thing seeing her mature because of this. It’s given her a different perspective on life and other people and some of the things they’ve gone through.
“Physically, she’s doing fantastic,” he added. “In that way, she’s always been tough, but now, she needs to get structured and hopefully that will come in time.”
After a gastrectomy, small meals must be eaten throughout the day to maintain a healthy intake of calories.
“A normal person would be watching their calories, but I’m watching to make sure I get enough,” MacKenzie said.
Through all of this, Jessica MacKenzie’s goal has been to remain optimistic.
“I try to keep up a positive attitude,” she said. “A lot of people tell me that I inspire them, so I don’t want to be all pessimistic. I want to help people by sharing the journey.”
MacKenzie made videos every day while she was in the hospital after her surgery and posted them to her YouTube channel, SendJessToEllen. She created the channel so that others going through similar ordeals could see what to expect after a gastrectomy. Her main goal, however, is to spread awareness about HDGC and she believes that obtaining an appearance on the Ellen DeGeneres Show would give her opportunity to reach a lot of people. She has also kept a blog at www.indigestibly.com and tweets from her Twitter account, @NoBellyNoProb.
“It’s so grumpy, my blog,” she said. “I’m having trouble finding the words to say right now. Writer’s block is the worst.”
Paying it Forward
In a campaign to spread awareness about HDGC and the CDH1 mutation, Jessica MacKenzie began a charity called Beads for Bellies.
“Over the summer, when I was really anxious about testing for the mutation, we went to Michael’s and bought some beads and we made bracelets and gave them out to family and friends,” she said. “Then a lot of people saw them and thought they were pretty, so it kind of evolved into this charity.”
All proceeds from bracelet sales go to No Stomach for Cancer, an organization whose mission is to support research on stomach cancer and unite people who have been affected by it.
So far, MacKenzie has raised almost $7,000 for HDGC research.
“I didn’t expect it to get this big,” she said. “It’s fun. It’s mind-numbing to make the bracelets. It makes me forget about all this stuff going on.”
Raising awareness of HDGC and the CDH1 mutation is important to MacKenzie and her family because many people do not know anything about this particular form of cancer.
“I just really wanted to spread awareness about this because a lot of doctors don’t even know what it is,” MacKenzie said. “My dad went for a physical the week before his surgery and his doctor had no idea what the mutation was and he thought he was crazy for getting his stomach removed.”
The CDH1 mutation was discovered only about 15 years ago in New Zealand. Research and awareness of the mutation and HDGC are still growing.
“I’ve sold bracelets to hundreds of people, and now all those people know about the mutation,” she said. “Hopefully it will save lives.”
MacKenzie, currently an animal and poultry sciences major, plans to return to Tech next fall and study creative writing. For now, she is at home with her family in New York while she becomes accustomed to her new life without a stomach.