Read the story of Aleena, breast cancer survivor
“The doctors are trained and taught statistics, but you know your body. Don’t let somebody that can’t feel what you feel, tell you what you know about yourself. That’s huge for me because I experienced it with the ultrasound technician. Had I listened and went home, who knows how far along my cancer would have been?”
My name is Aleena, I am 35 years old and I live in the US. I grew up a tomboy so I’m really into sports. My boyfriend is the same so we like to go to baseball games, basketball games, football games, we’ll paint our face, it’s fun. I work for a university at the dean’s office and I have a 3-year old daughter. That’s an interesting story; I got pregnant right after treatment. I saved my eggs prior to chemo just in case, but I got pregnant naturally about two months after my radiation was finished. It was a very interesting year for me for sure!
90% – 95% not cancer
I was 29, this was in the end of 2014, when I got sick with bronchitis and I lost like 7 to 10 pounds. I’ve always been heavier in my breast area, I was an F or G cup, so once I started losing weight I lost some in my breasts. On Christmas morning that year I had an itch and I felt a lump, which of course scared me. But my tia has dense breasts with little ‘tumors’ of cystic breast tissue, so that morning at her house I asked her to feel around and let me know if that was what she felt. She thought so, and of course you don’t want to think the worst. After that I noticed my energy level depleting really quickly. I would wake up, start working at 8, and by like 10, 11 I was already feeling exhausted. I just got hired at my new job and I didn’t have health insurance yet, so I waited for that to kick in and once it did I went to the doctor. She got a little concerned and sent me for an ultrasound.
I know the ultrasound technician isn’t supposed to say too much, but I always ask a lot of questions and I tried to do a little bit of research prior to. The technician said that, looking at my ultrasound, he didn’t believe I had cancer, and to come back in six months if it changes in size or shape. And that was it. So I asked “What is it that you see, that makes you think it’s not cancer?”. He explained to me that the edges of the circle were smooth, and if it was cancerous it would be more cloudy. I saw completely opposite of what he saw, so I started asking more questions. He gave me 90 to 95% chance that it was not cancer, and I was like “Why are you giving me room for error?”. I asked him to do a biopsy. He told me I didn’t have to, and that I might get an infection, but I’d rather have an infection than to be living with cancer. So he did the biopsy, and the pathology report came back a week later. I was diagnosed with Invasive Ductal Carcinoma with lymph node Activity: cancer.
I had the right breast mastectomy in May and started my chemo in June. I had two kinds of chemo, first four treatments of Adriamycin Cytosine that were really hard with a lot of nausea, then twelve more treatments of Taxol that were a lot better. And finally, 25 radiation treatments for anything that might be lingering.
I was offered the choice to get a reconstruction or not, and I actually met with a plastic surgeon to discuss it. She wanted to do an operation where they take muscle and skin from another part of your body and then place it there. My skin is damaged –burnt from my radiation treatment- so I also had to consider that if I were to get expanders, my body would not heal properly and reopen. I decided that I did not want to do more surgery. I had gone through enough.
We are taught that having two breasts is sexy, but you know what, I don’t care about that. In fact, something great came from my mastectomy. My boyfriend and I were just friends before, we fell in love during my treatment. He loves me for me, and that’s more important than a man loving me for my body. Through my grieving I was able to find love. I’m glad I took that route because I don’t know if I would have found this otherwise.
Take your life into your own hands
The doctors are trained and taught statistics, but you know your body. Don’t let somebody that can’t feel what you feel, tell you what you know about yourself. That’s huge for me because I experienced it with the ultrasound technician. Had I listened, and went home and waited for six months, who knows how far along my cancer would have been? You have people that will fight for you, but you have to fight for yourself too. And If something that the doctor is saying doesn’t sit well with you, get a second opinion. Your life is on the line, you want to detect it early. You will have a better chance at fighting it if you do.
I don’t have family history with cancer and I don’t have the mutation of the BRCA gene, so I don’t know what caused my breast cancer. We can speculate and say plastic water bottles; they say heated plastic leaks estrogen into the water, and I used to keep them in my trunk… I am not a scientist so I can’t say that it’s proven, but it makes me wonder. They also say it could be deodorant, I used to use deodorants that had aluminum. There are so many environmental things that it could have been, and then again it could have just been my nature for my body to over-produce estrogen. You can’t prevent everything, but looking back I would advise to take into consideration what you’re eating, what you are using. Slow down for a second and figure out what is going to be best for you.
I realize now that I didn’t take time to invest in myself or to learn about what I like, what I want, what I need. For anybody that is going through a similar thing, and even if you’re not, sit down and learn about yourself. What suits you, what drives you, what is best for you? That way you won’t look back and be disappointed in the choices that you’ve made.
I am a feeler, so I feel pain, I feel happiness, I feel everything, and I’ve gotten more sensitive now that I’ve dealt with all of this. I’m on hormone blockers as well, because my cancer was estrogen progesterone positive. I definitely feel little rollercoasters of emotions some days, where I’ll just be like “I don’t even know why I’m crying right now!”. I’m also working on the fear of getting secondary cancer. Two girls that I know through social media were in remission, and they passed away. Another woman that I follow on Instagram passed away just this week. So you can see, even in your own group, the people that have made it past the five year mark (after five years you are labelled a ‘survivor’) that have gotten it again. It’s just the fear of knowing that it’s possible for it to come back.
There are days where I see myself in the mirror and I realize that I really did go through this- sometimes it feels like it just a bad dream. Some days I miss my old body, I miss feeling so good in a bikini, but I’m not the same person anymore. Actually I think it made me more confident. And I want other women to feel confident in their bodies too, because having cancer doesn’t change them as a person. In fact, I think it makes them better. You learn to appreciate your body, and that it’s not ONLY about your body! And if it is, it’s for good reason: to show your imperfections. With social media being so prominent in everyone’s life right now, all you see is perfection, filters, photoshop and smooth skin. I’m so imperfect, and I’m perfect with that.
I reframed from posting so much on social media about breast cancer for a while after I went through it. I was excited with my new life and having a baby and my relationship, I didn’t want to forget about it but it’s also traumatic and I wanted to feel something different for a moment. You’re reminded every day when you wake up and see yourself in the mirror, so you don’t want to be reminded ALL the time. But it’s part of your history and your life. It’s something you can’t change.
Right now I just want to do more to help women- not even just women, nobody talks about men! Did you know Beyoncé’s dad got breast cancer last year? There is also still not enough information showing that it is possible to get breast cancer at a young age. Cancer doesn’t discriminate. I don’t understand why I still hear young women saying: “My doctor told me I am too young to have breast cancer”. How many people do we know that might have it, and just aren’t aware? That’s why I feel like being an advocate for breast cancer is my purpose.
Even the awareness that there is needs improvement. They tell you “The best cancer to have is breast cancer”. “You can just get reconstruction, and your boobs are going to be better than before”. It’s not that at all! They don’t even see the pain that we go through. Someone like me, I’m not going to get a new set of boobs. I have to consider the fact that my body might reject the implants and then I might have four or five more surgeries. I don’t want to go through that, when does the process end?
I have to normalize having one boob. I don’t like wearing a prosthetic breast, I love the summertime because then I don’t feel like I have to wear one. If I’m going to go to a pool party, I’ll just have my one boob and that’s okay. But when I go to work… Everyone knows, but I haven’t normalized it. Clothes are not designed for one breast. So if I’m wearing something like a V-cut, if I bend over you can see there is a gap. And who cares, right? But at the same time it brings questions and looks. Not that it’s going to hurt my feelings because I really don’t care, sometimes you just don’t feel like answering. But you know what, now that I’m thinking about it, that is actually its own way of advocating. It’s better for people to ask questions than to not ask questions. When I go back to work I’m going to stop wearing my boob!
fall|winter 20 preview
In January, I presented my newest FW20 collection during a show full of dance and entertainment in Rotterdam. All my work as a feminist designer is inspired by muses, powerful female icons from past and present. And for FW20, my muse will be crime writer Agatha Christie. A few months from now, you will get to discover the collections, and see how they tell stories like Agatha’s thrilling books do..
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