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Terminal at 29: Cancer patient Nicole Jannis candidly discusses the realities of having a deadly disease

Jannis practices yoga in her home in Barrie, Ont. (Amanda Jerome)
Jannis practices yoga in her home in Barrie, Ont. (Amanda Jerome)

Nicole Jannis could be the poster child for breast cancer advocacy, and sometimes she feels like that role has been placed upon her. You’d never know from her boundless optimism, pixie-like smile, and engaging blue eyes that the 29-year-old from Barrie, Ont. has spent a difficult year fighting the disease.

"I've kind of had this image slapped on me, this whole pink ribbon idea of I'm this poster child for fighting back and breast cancer," she says. "This whole idea that I have cancer, but cancer doesn't have me. It's very much become a huge part of my life, but it's not my life.”

Jannis was 27 when she found out she was BRCA positive, an inherited genetic mutation that can result in breast cancer, and 28 when she found a lump in her breast. With a family history of the disease and a positive diagnosis, the team at the Royal Victoria Hospital in Barrie moved quickly and Jannis was undergoing treatment within a week of her diagnosis.

I remember throwing up right away ... It was just utter despair at first, like holy shit, let's just give up.

—Nicole Jannis

Since Apr. 8, 2014. Jannis has undergone a double mastectomy, chemotherapy, and radiation, doing anything she could to fight off the cancer that had appeared sooner than anyone expected. To help mitigate the misery of a challenging diagnosis, Jannis and her mother have dressed up in costume for every chemotherapy treatment. They became well-known to hospital staff for their wacky getups, and people looked forward to seeing what they'd show up in next. Jannis shared her journey openly on social media with photos of her at the hospital and vlog updates.

Every post had a positive spin as she never doubted she’d beat cancer. She was young, she was strong, her mother is a two-time cancer survivor and Jannis had every hope in the world that she would come through triumphant.

But on Jan. 23, 2015, she was told her cancer had metastasized to the bone and spread to her liver and lungs. She’d reached stage 4 and “terminal” was the new diagnosis.

“I believed I had beaten this and I never questioned that,” she says about reaching the end of her breast cancer treatment. “From the very beginning it was 'alright! I'm going to go through cancer, and this is going to be something I do and then be done with it and I'll move on and have my babies and life carries on.' I never ever wavered from that. I think that's a huge testament of how I've been able to get through this past year, probably denial, but also pure optimism to the point where I was like ‘oh, I'll never die from this, that's crazy.”

Jannis adjusts her chemotherapy port at Sunnybrook Hospital in Toronto. (Amanda Jerome)
Jannis adjusts her chemotherapy port at Sunnybrook Hospital in Toronto. (Amanda Jerome)

As crazy as it may seem, it's true: Jannis and her family are dealing with the strange and severe reality that there's no cure for stage 4 cancer.

“I remember throwing up right away ‘cause that was just my go-to,” says Jannis about when she found out her cancer was terminal. “It was just utter despair at first, like holy shit, let's just give up.”

“I went from 150 per cent of 'rah-rah, let's beat this, let's go breast cancer! Let's fight!’ to ‘I can't.’ I've never had the wind knocked out of me to that extent. No matter what news they're going to bring me moving forward it'll never be that bad. They'll never sweep me off my feet again. That's key, I know what I'm dealing with now and it's the shock that damages you more than anything.”

Despite being told she’s terminal, Jannis has chosen to continue treatment and fight back. Her infectious positivity and determination keep her going as she adjusts to her new reality.

“I had a doctor explain it to me recently and she kind of put things into perspective when she said it's a chronic disease,” she says. “She compared it to diabetes. Not to say cancer is diabetes, but it was just that logic of ‘you're going to go on to do this for the rest of your life’ and in my case right now I'm going every three weeks for treatment and I'm going to live scan to scan."

...there's a little bit of anger there too right now as I keep seeing all these survivors that have beaten breast cancer and I'm like that should be me, I should be done!

—Nicole Jannis

Jannis knows that her prognosis combined with her age scares people. She knows that people think if it can happen to her, a young woman in good health, then it can happen to anyone. Despite her situation, she has no regrets when it comes to her health. She was proactive and did all she could do, from getting genetic testing, to finding the lump and bringing it up with her doctor immediately. She advises people to listen to their bodies and be proactive if they think something is wrong.

“I never want to get to the point where I'm an advocate coming off like "don't smoke, don't drink, stop eating sugar," that kind of shit, we all know we should be taking better care of ourselves,” she says about health, stressing that people should go with their gut.

“Check your bodies, again that's so over used, especially with breast cancer, but make a point of being aware. I think you know your body better than anybody else. I hear all these horror stories of women who experienced the same things I did, but they didn't want to know. Don't be afraid to find out. It's much better to find out now than later. If you have that lump or if you feel like something's wrong, it'll be a lot harder to live with yourself knowing that you could have done something differently.”

Jannis chats with husband Derek Marchand and mom Lesley Jannis at Sunnybrook. (Amanda Jerome)
Jannis chats with husband Derek Marchand and mom Lesley Jannis at Sunnybrook. (Amanda Jerome)

Even though the benefits of staying in good health is common knowledge, many people continue to ignore that and play the fool with their bodies. As a young woman with a terminal disease, Jannis has a whole new perspective on these individuals.

“You do get this bitterness of ‘here I am being as healthy as I am and look at the position I'm in. Fighting so hard for my life, but you seem to be throwing yours away.’ I think it comes down to trying not to let it consume you because it could consume you and I don't want to hate people. I don't want to be angry.

“People know they should be eating better, yes these people know they shouldn't be smoking, it's not for me to judge, but yes, on the bad days when you're looking for someone to be mad at and you see that person abusing their health it can be very frustrating to be around.”

Nobody dies of breast cancer, you die of stage 4, you die when it spreads.

—Nicole Jannis

Mental health and staying in the right frame of mind is just as important as physical health and Jannis has turned away from social media on days when she doesn’t want to deal with negativity.

“There are days when I don't go on Facebook because if I have to see one more person complaining about their headache or ‘I had the worst day of my life. FML.’ I want to say ‘the next person who writes FML I'm going to punch in the face because I've been at the hospital for the past 10 hours.’

“It's about learning to take yourself out of the situation and understanding that you can't change these people, it's who they are, and a lot of people are just very pessimistic and hard on themselves and looking for that sympathy. I don't look for sympathy. Everyone sees me doing this big public display of fighting, and advocating, and I do, I make my story very public, but I don't want it to ever be confused with sympathy ‘cause I don't want people to feel sorry for me. That's why you'll never see me post something negative because it goes back to putting out that positive energy.”

But even when Jannis is trying to remain upbeat and positive, it can still be difficult to talk to people who don’t know what she’s going through – even those with the best intentions.

“There are days that I want to tell you all to go f--k yourselves. There are days when I'm upset, or I'm angry, but what kind of reaction would I get then? I can't stand the head tilts and the ‘aww, you okay?’ It makes me go nuts when I get the head tilts and the sappy eyes because it makes me feel sad and it makes me feel sick and I don't want to feel sick and I don't want you guys to feel sorry for me.”

Jannis plays with her dog, Abigail, who she calls her 'best medicine.' (Amanda Jerome)
Jannis plays with her dog, Abigail, who she calls her 'best medicine.' (Amanda Jerome)

Jannis has a fighter’s spirit and it's kept her strong through the past year. She’s blunt when it comes to her survival instinct because that is who she is, as blunt and as feisty as any champion boxer. She gets up and she fights even on her worst days.

“You can only wallow for so long and you can't focus on being sad because I think if you're just willing to give up that you will,” she says. “I don't think you should ever have a timeline, you should never be told you're going to die because I think if you believe that then you will...I'm positive because I don't know how not to be.”

Jannis, who is a self-professed control freak, gets out of bed every day and does her make-up, fixes her wig, and pulls on a fresh pair of jeans. These are things she can control in a world full of hospital visits and treatments that are out of her hands.

“I always say, even on your worst days, you get up and you shower and you put jeans on, because you have to feel good about yourself and self image is huge," she says. "Do whatever makes you feel good. Eat! Go ahead, eat your cheeseburger, do what makes you feel good. It's all about balance, and I think you have to indulge. Even with this diet right now, I'm cutting all this stuff out to try and help shrink these tumours, but I think I need to cut back and go eat the cheeseburger. You know, treat yourself. Go shopping! I go out and buy myself a new wig like I'd go out and buy myself a new pair of shoes, it's the same logic.”

Jannis has been using this positivity to be an engaging advocate for breast cancer awareness, but with her terminal diagnosis she’d like to shift that awareness to the danger of metastatic breast cancer and how it can spread.

“I didn't know that you have a 70% chance of your breast cancer going to your bone. It's all about finding the lump and catching breast cancer and I'm all for that, but we all know that we need to get mammograms, we all know we need to check our breasts, what we don't know is the chance of spread. Nobody dies of breast cancer, you die of stage 4, you die when it spreads.

“It spreads to other parts of your body and it's those four main sites: brain, lung, liver, and bone. I spread to three of the four, and I was still going through treatment. I knew that it could spread, but I didn't know the seriousness of it," she says. "I had the mastectomy; it was all about taking care of my chest. We never considered it spreading so fast. And there's a little bit of anger there too right now as I keep seeing all these survivors that have beaten breast cancer and I'm like that should be me, I should be done! I'm struggling with that a little bit right now.”

Jannis prepares a meal with her husband, Derek Marchand. (Amanda Jerome).
Jannis prepares a meal with her husband, Derek Marchand. (Amanda Jerome).

It’s hard not think of life lessons when faced with a terminal diagnosis. Jannis has learned from this experience not only how strong she really is, but that life’s little irritations don’t really matter, and it’s okay to be selfish and spend time focusing on what's most important to you.

“Time is such a big thing, and going cliché, it's living every day to the fullest. Every day is a new day and don't worry about tomorrow.

“The biggest thing people are surprised about going forward is why have I not flown across the world, and why am I not eating at the best restaurants, and going to do all these crazy bucket list things. What people don't understand is that the biggest thing you crave when you're diagnosed and told it's terminal is normalcy. People don't get that, especially in the beginning with all the appointments and testing, you really just want to sit at home with your husband and your dog and watch Netflix and do what's normal to you. That's what you crave. And feeling normal because the whole experience is so surreal you miss that. More than anything I miss work, I miss work so bad. I miss the social interacting with people and all my staff, and the day-to-day jokes and that kind of thing.

“I just miss being me."

Jannis writes about her battle with metastatic cancer on her blog, Boobie and the Beast.

Follow Amanda on Twitter: @MyOneWomanShow