Nalie

Nalie
Age at interview
25

Nalie (25 years old) is in a relationship and worked as an e-commerce coordinator. She is currently unemployed as the company she worked for closed down while she was in treatment for her breast cancer.

Nalie received her diagnosis in 2013. Ten months before her diagnosis, in 2012, Nalie felt a lump after workout, but being so young she never really worried it. A few months she saw her doctor who gave her a referral for an ultrasound even though she suspected it to be a cyst. Another few months later, Nalie had to ask her doctor for a new referral as she lost her old one. Nalie then called several hospitals, thinking she had to make an appointment for a mammogram. She was told that mammograms were not given to women under the age of 40. Nalie felt somewhat reassured that she would be ok. After a few months, when seeing her doctor again, she found out that she should have asked for an ultrasound and not a mammogram. Nalie’s mother, who only just found out about the lumps, then made sure that Nalie got an ultrasound done ASAP in a private clinic. From there, everything went really fast and Nalie had to learn many new things while seeing all kinds of health professionals in a short period of time. Nalie, was diagnosed with breast cancer and had chemotherapy, her left breast was removed, and she finished radiotherapy recently.  A few days before she was to start the chemotherapy, she found out about the risk of losing her fertility because of the treatment. The oncologist postponed the chemotherapy for one week, when Nalie told him how important it was to preserve her fertility. Nalie had a surgery to get her eggs frozen and started taking Lupron injections to stop the production of eggs. Nalie, a graduate in communications, has video recorded many of her experiences and she decided to post her experiences on Facebook as well as on her own website; www.nalie.ca. She received many positive reactions of women who told her it gave them hope and inspiration to be happy and grateful of what they have. This was a huge motivation for her to keep fighting her cancer and share her story.

Time since diagnosis
2 - 5 years
Phase of treatment
Remission

Videoclips

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Yeah, hair loss was probably the hardest thing for me especially because I used to have long hair down to the butt. My hair was really, really nice, everyone... I used to curl it, everyone used to love the hairstyles I used to do. At 20 something years old, as you know, as a woman, hair is super important to you. It’s not like you know, we’re 60 or 80, which I’m sure it was important to them too, but you know, at 80 years old, your hair, your kind of like, it’s whatever at that point. But like at 20 something, you don’t see a bald 20 something year old girl walking around the streets. So that was a really hard thing I had to deal with. At the same time, I wanted to really show others that there’s nothing wrong with being bald, there’s nothing wrong, it’s temporary, that’s what I had to constantly remind myself. Let’s pretend this is just like a daring hairstyle you gave yourself to do and you’re only going to have it for less than a year, so you might as well rock it.  

And that’s another theme that I had on my blog, I took videos of myself the day that we shaved my head, my entire family, well the men in my family shaved their heads with me. Yeah, so, my brothers and my cousins, my dad, they shaved their heads to kind of break the ice, and just in camaraderie. And then, it was funny because I got to shave their heads first. My older brother had like, really thick, you know, good looking hair and so it was a big deal for him too to do it. And so, it was funny that I was able to shave it off and then when came my turn, I was like, okay, why not? Because my hair was falling out already, and it was, I had like this horrible receding hairline and anytime I passed my hand through my hair, chunks would be falling out. That day, we shaved my head, I was excited because I couldn’t stand seeing my hair fall out anymore, we just shaved it.

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I felt the bumps on my left breast at the age of 23, if I remember, so it was almost 10 months before actually doing something about it. I was in the shower and I had just worked out because I used to be really, really active and sporty and fit. So I came back from the gym once and I was just scrubbing my upper body and as I was scrubbing my left breast. I felt lumps, but my initial reaction was, “It must just be my muscles or something,” because I had just worked out my chest and so I didn’t do anything about it. I didn’t think it was anything at all. It didn’t even scare me. It didn’t faze me. And it just so happened that a few months after I had a family doctor appointment. So I went to go see my family doctor and she usually does a breast exam and I told her that my left breast felt a little bumpy. She told me that it was normal in our 20s.We tend to have more bumpy breasts because of fibers and hormones and fat. So she felt it and she’s like, “Don’t worry, it’s probably just a cyst.” So I didn’t even worry at all but she gave me a referral paper just in case. And so when she gave me the referral paper I didn’t really do anything with it because she told me not to worry. And when you’re like in your 20s it’s not a priority to go book you know like at that point I thought a mammogram. And I let months pass and finally I took the referral paper after a second shot where my doctor had to give it to me again because I had lost it. That’s how much I really didn’t even care about it.

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No I didn’t do any complimentary treatment, but if there was one thing that I knew I had control over it was what I ate and so like I said, I completely cut alcohol. They said that we were allowed to, according to the chemotherapy guidelines of what you can and cannot do. It said that I could have some, if I wanted to have one drink. I could have wine and all that but I didn’t see the point to it. I wanted to really try to keep my body as clean as possible knowing that it was about to be intoxicated with chemotherapy. So I tried to do my best to change my diet, I tried to cut off sugar almost completely. I ate a lot of greens, that was suggested, and I did juicing a lot, just to get extra nutrients and vitamins over my meals and stuff. I just wanted to try to have a really healthy diet during treatment and as always, but even more.

Interviewer: But you managed to make those changes during your treatment because some women find that pretty hard to do?

Exactly but like I said, I live at home and my parents and my family were extremely supportive. I started off juicing myself but the times that I was extremely weak, I woke up every morning and I had a juice ready for me, from my dad or my aunt, who actually lives with me. Like I told you, we’re a very big family, so, a lot of people would think that that’s a hard thing to be so many in one house, but like, in my case it, was pretty lifesaving.

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I had to purposely take Lupron shots to protect my fertility because I found out that when doing chemotherapy you can become infertile. To me having children of my own in the future is a huge, huge importance in my life. I also ended up freezing my eggs prior to doing chemotherapy and not only did I freeze my eggs I agreed to take Lupron injections which put you under menopause. So their theory in the reproductive centre is that they say that if you’re not producing any eggs then there’s less of a chance of the chemotherapy harming them.

So I was under menopause at the age of 24 or 25. I was going through menopause with the hot flashes, and all of that on top of chemotherapy symptoms and side-effects. But I wanted to do it,  I thought it was important for me to know that I did whatever it took to protect my fertility. So being in menopause your body changes as well, so that’s one thing I had to go through physically, that was challenging.

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Well you have drains Jackson-Pratt drains that are stuck on the side of your body literally. You feel like you’re in the matrix where you have this grenade looking tube, where all the liquid comes and it just takes all the liquid to prevent infection from the wound. It leaks into this drain that you have to empty yourself. It’s kind of gross because you see your blood and your, the yellowy reddish looking liquid that’s… empties out of your body. You have to keep that on you for 10 days. Going out you have to wear a loose T-shirt and you have to find a pouch to tuck it in or just pin it to the side. So you have just these drains stuck to you for 10 days and that was difficult to deal with and as soon as they’re out of you.

Interviewer:  How was it when they took it out? Was there anything particular?

When they take it out it literally felt like snakes were slithering out of my body because I didn’t expect it to be that deep inside me. The doctor literally just yanks it out of you, and it’s not that painful if the doctor knows how to do it well, but as soon as that’s done and they, I have 2 scars here on the side where there was, used to be tubes that were in it’s just little tiny holes.

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And so she felt it and she’s like, “Don’t worry it’s probably just a cyst,” so I didn’t even worry at all either but she gave me a referral paper just in case.

And so when she gave me the referral paper I didn’t really do anything with it because she told me not to worry and when you’re in your 20s it’s not a priority to go book, at that point I thought a mammogram. I let months pass and finally I took the referral paper after a second shot where my doctor had to give it to me again because I had lost it. That’s how much I really didn’t even care about it.

She asked me, “Oh did you ever go get the exam?” and I said “No”. So I said, “I lost it,” so she gave me a new one and finally I was calling for a mammogram and all the hospitals asked me my date of birth and as soon as I said 1988 they were like, “Oh no sorry we don’t give mammograms to women under the age of 40.” So again I was like that means it must be nothing. I mean I’m in my 20s, I’ve got nothing to worry about if they don’t even give mammograms to women under the age of 40. So again I let months pass and then I had to go see my doctor again and when she asked me, “Did you get the test done Nalie?” and I said, “No they were refusing me.” She said, “Well how were they refusing you?” I said, “No one gives mammograms to women under 40.” She said “You’re supposed to ask for an ultrasound,” so I was so naïve about it I didn’t know, I didn’t know anything about breast cancer and how it worked. So finally that’s the only time that I actually mentioned it to my mom and I didn’t want to mention it to my mom because mothers usually panic and get stressed and get worried. So this is probably a year later, almost 10-11 months after finding the initial bumps on my breast that I told someone about it aside from my family doctor.

And then my mom made sure I got that ultrasound done ASAP and so she even inquired with my sister-in-law who’s a nurse and she referred me to a clinic where I would have to pay to get an ultrasound right away instead of waiting the 3 months at the hospital.

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I think I was completely clueless about breast cancer and I think that’s a huge reason why I decided to make my story so public. With my blog, I write about everything that I know about breast cancer and everything that I’m going through and take videos of what it’s like, because as a 20 something year old, you have no idea what it’s like. The furthest campaigns go is to show you pink ribbons and everything pink, and that’s as far as awareness is brought. So I wanted to really bring that type of awareness and make it raw and real through my blog and my videos. Because as a 20 something year old you don’t know anything about breast cancer. And I will admit it, the first time my surgeon and my oncologist read my diagnosis and read my pathology report and he said, “It was hormone positive estrogen, progesterone positive, HER2* (Human Epidermal Growth Factor Receptor-2) negative…”, you hear that and it just sounds like Chinese to you. You don’t know what that means. Well obviously now, having heard it over and over and over again, and asking questions, I’m much more aware of my diagnosis but still, it’s not something that everyone knows. If you don’t study in the medical field, you don’t really understand.

*HER2: A gene present in cells that, in some breast cancer cases has a mutation. This mutation causes the HER2 gene to be overproduced in breast cells, causing cells to be more aggressive. However treatments that target HER2 are very effective.".