Charissa has no stomach

She was alone when she received the UMCG’s e-mail, which was something she hadn’t counted on. She’d asked them to send her the results of her genetic test by e-mail because she didn’t want to accidentally open a letter when there was no one around, or have to answer her phone in the middle of a class.

Religious sciences student Charissa Moorrees called her mother. On speaker, her mother heard her daughter say: ‘I’m opening the e-mail now.’ A few seconds later, her bad feelings were confirmed. Something was wrong with her.

Charissa is a carrier of a genetic mutation on the CDH1 gene. This is a very clinical way of saying that she has a seventy percent chance of an aggressive form of stomach cancer, and, because she’s a woman, a fifty percent chance of breast cancer on top of that. In both cases, they are types of cancer that don’t limit themselves to a single location, but develop in various places all over the body.

Alarm bells

A year ago, Charissa had seen what this mutation could do up close. Her cousin, a 27-year-old engineer, went to the doctor with an upset stomach. They soon discovered that the stomach cancer had not only affected his entire stomach, but that it had spread to other organs. He only had three months to live.

‘That’s when the alarm bells started going off’, Charissa recalls. ‘Because he wasn’t the only one in our family with cancer. I had an aunt who had breast cancer, and many other family members had died of cancer.’

People started getting tested, and it turned out many in the family had the genetic disorder. Charissa’s uncles turned out to be carriers, as did her mother. And so Charissa got tested as well, in the knowledge that if she, too, was a carrier, nothing in her life would ever be the same.

‘To be honest, I’ve always felt as though something was wrong with me’, she says. ‘As a child, I was ill often. I would sometimes cry with how much my stomach hurt. I’ve been to the doctor, of course, and had a gastroscopy to look inside my stomach, but they never really found anything.’

And so she was sent home, with a diagnosis of stress. ‘It’s enough to make you doubt yourself’, she says now. ‘Because I always felt that there was something wrong.’

Pole dancing

That something was indeed wrong was confirmed that day she opened the e-mail, with her mother on speaker phone next to her. ‘On the one hand, I was sort of happy to know that the symptoms were actually caused by something’, she says. ‘But it was a huge shock.’

Being a carrier, she now knew, would mean her whole life would change. ‘It meant my stomach would have to be removed, that I would need a double mastectomy. I really want children, but this is not something you want to burden your kids with. So what’s going to happen? What will my life look like from now on?’

Charissa is only 28 years old. She loves her body. This is evident in how she dresses and presents herself, from her shiny red nails to her long, curly hair. Her diet used to be vegetarian, even vegan. She doesn’t smoke, doesn’t drink. She worked out fanatically, five, six times a week. She did jazz ballet, modern dance. Her biggest passion is pole dancing, a sport which requires an enormous amount of muscular strength. ‘I need my stomach to do those things. They are my life.’

Everything she cherished was suddenly up in the air, and although she knew there was really only one thing to do – have surgery – she still hesitated. For months.

Unbearable

‘I thought: but I’m a vegetarian, maybe that will reduce the risk. Or: maybe I’m imagining my stomach pains. I was looking for excuses, because I couldn’t handle the reality of the situation’, she says. ‘It’s an unbearable situation. I didn’t want to lose the life I had.’

In the end, she made a decision. As did two of her uncles, her aunt, and her mother. ‘It was an organisational nightmare. Who gets operated on when? Who will take care of whom?’

Three months ago, Charissa had the surgery. Her stomach was removed and her oesophagus was connected directly to her small intestine. The dairy products she had once avoided so carefully now became a daily staple. She could no longer have potatoes for dinner. She can’t eat a bag of crisps, or ice cream when she’s heartbroken.

In fact, the act of eating is extremely difficult. ‘I can barely hold the food in.’ To maintain her weight – she’s lost over six kilos since the surgery – she has to eat at least eleven times a day. She also really needs to watch what she eats. Because the food can’t be digested by her stomach anymore, sugars and carbohydrates can be absorbed too quickly. ‘I get really ill when that happens’, she has since learned. ‘I get a fever, intense heart palpitations, I get dizzy and throw up. And I get a terrible bellyache. So I learned to eat well really quickly.’

First stage

She knows she made the right decision, though. When the doctor visited her after the surgery, she was told that her stomach had been affected by the first stages of cancer in no fewer than 26 places. ‘That was a lot for someone my age.’

For just a little while, she was able to tell herself that she’d done the right thing. She had beaten the cancer to the punch and could get back to her old life. ‘But that’s when the doctor told me they hadn’t been able to get everything. She said the frozen section wasn’t clean. There is still some stomach mucosa in my oesophagus.’

This means she is not out of the woods just yet. ‘I could still get cancer’, Charissa says. ‘They can try to remove some of it with biopsies, but there’s no certainty they’ll get it all. Or I can have more surgery, where they would open up my whole chest.’

Enormous blow

It was an enormous blow. Not only is she not safe yet, the other surgeries she needs, such as the preventative double mastectomy, cannot be performed any time soon. ‘I want to finish it, be done with it.’

She’s tired of always having to choose the lesser of two evils: should she get tested or not? Should she have surgery or not? And down the road, when she is having kids, should she select a specific embryo, or not? ‘It just never ends.’

It’s not fair, Charissa says. ‘You feel kind of screwed over’, she explains. ‘I took such good care of myself, lived a healthy life, made good choices. I think it’s important to be a good person, to not do any harm to the environment. I love animals.’

She knows, obviously, that things like these can just happen. That it’s just bad luck. And yet. ‘I’m just pissed off. It feels so unfair.’

No more goals

She is genuinely grateful to be alive, though. That’s she’s been given the chance her cousin never had. She is grateful for her supportive friends, the way faculty accommodated her. ‘That really meant a lot.’ She’s also learned what’s really important to her. What she wants. ‘I just want to be happy. I have no more goals to accomplish. My happiness no longer depends on a diploma or being able to buy a house. It’s in the small things.’ She knows this realisation is a good thing.

But when it comes down to it, she says, no one can understand what she’s going through. ‘People can be sympathetic of course, but this is my pain. It’s my burden to carry.’

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