“A summer afternoon, in my twenties a life-changing experience uprooted my life, redirecting my path. Cancer doesn’t discriminate. It doesn’t care who you are, your age, race or what you do for a living. When you hear that six-letter word, everything just…stops. Life, as you knew it, it’s over.
It’s hard for me to put all of this into words as the memories from my past are reopening old wounds of the life I loved and didn’t get to fulfill. Prior to my diagnosis, I was living my dream as an international fashion model, working since I was 10 years old and couldn’t be happier! Fashion is my passion, my everything and the only job I ever knew and wanted. I can still remember the words that hijacked my life making everything come crumbling down around me. I can’t speak for anyone else. This is my story, and like snowflakes or fingerprints, no two are the same.
THE DISCOVERY AND JOURNEY
What I thought was going to be a routine trip to the dermatologist turned out to be much more when my biopsy came back positive for cancer and I needed to have surgery on the left side of my face. It was shattering news; how am I going to work with a scar that runs down the side of my face? I was devastated – my career was over, all that hard work, and dreams shattered to pieces. I became extremely depressed and shut down. What was I going to do? I’ve never had a job, I didn’t go to college – stressed to the max! I started to get into Creative/Event Direction, and there was always a void left unfulfilled.
Keeping up with my old routine, I hit the gym five times a week, three times with my trainer, additionally mixing in hot yoga, spin and pilates. I was determined to get ‘me’ back. I was hopeful I’d be able to resume my career. The industry has changed a bit to be a little more accepting to flaws. I knew things wouldn’t ever be how they were, even having a bit of my old life back, doing what I loved would be better than nothing.
Pushing myself hard to bounce back, I thought I pulled muscle or had a cyst, so off to the doctor I went for an ultrasound which turned into breast biopsy. July 25, the day of my second diagnosis, I received the call that my results were positive for Triple Negative Breast Cancer. I remember hearing the words (again), ‘you have cancer,’ but this time it hit differently. I remained as calm as one would be. I didn’t want my mom to notice any change in my behavior while I was on the phone with the doctor. As soon as I got off the phone, I called my dad so he could come home and I could tell them both at the same time. I knew my mom was going to be a mess and she would need the support. A few tears and that was it. There was no time for crying and crying wasn’t going to change anything.
A day or two later, I returned to the doctor’s office. She was very nice but I could tell she was tip-toeing around answering certain things because I was young and she didn’t want to further upset me. She even mentioned that I was taking this very well. I asked one question: ‘Was I going to lose my hair?!’ At that point, the only thing that I was concerned with, was ‘looking different.’ I didn’t want to look or feel like what people tend to associate with the term ‘cancer patient.’ I remember the doctor looking up at me with sadness in her eyes. She paused and said yes, I would lose my hair. I asked again. ‘Is there any way around that?’ Her answer was no.
Later that night after talking with my family, I wanted to meet with a few more doctors. I met with Dr. Elisa Port and Dr. Amy Tiersten at The Dubin Breast Center at Mount Sinai. I knew right away they would be my doctors. Dubin is as pleasant as a cancer center can be, private treatment rooms with TVs, plants around, heated chairs. When the nurse brought me into the section where treatment takes place, I felt like I was out of my body almost watching myself walk throughout the space; it just wasn’t real. How could this be real? It seemed like a cruel joke!
To make matters worse, I also learned I would be in a chemically-induced menopause and if I wanted to have kids, I’d need to freeze my eggs because the chances of me conceiving naturally was slim. My doctors wanted me to start treatment ASAP so this decision needed to be made rather quickly. I met with the fertility doctor the following day and started the process that night. Everything was moving so fast, it was very overwhelming and I had no real time to process anything. The thought of having to inject myself night and day totally freaked me out! There was so much to take in and figure out and the first night was so stressful. ‘Rebel Yell’ by Billy Idol became the inject song night and day – it made it a bit more fun!
A week later, surgery was scheduled for retrieval or what I referred to it as ‘hatch day.’ A week after that, another surgery was scheduled to place my portacath which would be used to administer chemotherapy. Monday, August 26, was my first day of chemo (my hype song was ‘Win’ by Jay Rock). After I got settled into my room, I met my nurses Cate, Ryan and Kara. We instantly clicked and started chatting and for a moment, I forgot what I was about to endure. I also decided to cold cap, which keeps chemotherapy from reaching hair follicles by constricting blood vessels in the scalp. It allows patients to keep some of their hair during treatment. This decision gave me a bit of hope that I would still be able to be ‘normal’ during a time in my life that was anything but.
It was nice to have friends and family visit, which was always a much needed distraction from treatment and especially while my head was being frozen! It was very uncomfortable, fitted so tight around the head at -40 degrees Fahrenheit for eight hours. I just kept repeating to myself, ‘It’s just eight hours, you got this. Don’t give up. FIGHT HARDER. You feel no pain!’
A few weeks into treatment, I made the decision that cold capping wasn’t really working for me how I hoped. My chemo cocktail was really strong. It was very emotional for me to see my hair fall out in clumps everywhere. It was also very hard not to be able to wash my hair (cold cap rules.) I always felt dirty and I was frustrated with my appearance. At this point, I started to gain weight from the steroids and I was in so much pain with side effects and nothing was helping. The nausea and headaches were crippling, I just couldn’t justify adding more pain freezing my head just to keep hair.
On Oct. 1, I took matters into my own hands and shaved my head! I didn’t know how I was going to feel and was scared I wouldn’t be able to look at myself ‘ugly’ in the mirror. I took the buzzer to my head and it was the MOST FREEING experience! I don’t regret it for one second!
Two weeks later is when it all went downhill, or I should say further downhill. I was hospitalized with a high fever, dangerously low neutrophil count (which is never good for a cancer patient) and internal bleeding, I was instantly quarantined. In excruciating pain- I was pumped with meds to try and relieve the pain but NOTHING was working. I wasn’t at Mount Sinai and feeling very uneasy with having doctors treat me that didn’t know my history. I wanted to go home! It was this night for the first time I was told that I wouldn’t make it through the night. My body became weaker and weaker, I recall being so scared to close my eyes that night because I didn’t think I would wake up. Seeing the look on my parents face, I knew I needed to not give in or give up; it was time to fight.
The following week, I returned to Dubin to resume treatment as scheduled, but not quite. I was admitted back into the hospital. I felt like this was a never-ending nightmare. I needed blood transfusions and I was in organ failure. Overnight my body swelled up with 15 pounds of water, and bone and muscle pain was at an all-time high. Using every bit of energy I had left which wasn’t much, I pulled myself out of bed and kept my body moving by walking laps around the nurses station. Almost two weeks later, I was finally released from the hospital. Six more months of chemo followed by breast surgery and then daily radiation.
Thanksgiving, Christmas came and went. It was now March, my birthday, and I wasn’t really feeling up to celebrating or had the energy to do so. My best friend insisted we have dinner and champagne. She said it’s our tradition and we have a lot to celebrate – I was done with chemo and surgery! I was feeling a bit bitter about having my life put on hold and all the things that were ‘robbed’ from me. At dinner, typical girl talk, we discussed some of my feelings and some of the ‘whens’ came up. When will things go back to ‘normal’ for me, when will my hair grow back, when, when, when. The topic of dating came up, a slightly sore subject – I wasn’t much into the dating game prior to being diagnosed with cancer. I was previously in a long-term relationship and I couldn’t wrap my head around what that would be like with all the insecurities I have from cancer now. My friends encouraged me to put myself out there but the thought of it made me so uncomfortable. Do I have to tell them I’m a cancer patient? That my hair isn’t mine, it’s a wig? I was feeling distressed with the weight gain and how I looked in clothes. It all was just a bit too much for me to even think let alone experience.
Shortly after my birthday, a few friends and I went to a hockey game. Tickets were gifted by my lovely, supportive friend and super talented NHL writer. It was ‘Hockey Fights Cancer’ Night (they know I can’t turn down this special night, it was good bait to get me out of the house!). Knowing it was going to be an emotional night, I was happy to be out having a night with friends. The Devils mascot, NJ Devil, walked by, looked at me and said, ‘Want a picture?’ I was still really uncomfortable being captured but I said, ‘Oh okay.’ In this moment, I felt ashamed because I was hiding, especially on a night that was for cancer. Tears ran down my face, I took my wig off. I felt as if all eyes were on me. My friends were screaming and cheering; this was the first time I allowed myself to be seen without a wig. I was about to put it back on when this guy walking by with his friends yelled, ‘Keep it off- you look beautiful!’ The tears stopped, a smile came across my face and I embraced the moment.
A couple days later, everything shut down and we all went into quarantine. I was sick in bed with COVID (like I haven’t been through enough!) During this time, I started chatting with this guy. It turned out, he was a surgical resident at the same hospital I go to. Despite all the worries and insecurities flying around in my head, I was very comfortable with him even though we just stated our conversation. I knew I had to be true to myself and told him I was a cancer patient – he was completely unfazed. From the moment we started chatting we didn’t stop. A few weeks passed and we planned to hangout. It took me a little bit to wrap my head around meeting someone like this. There was something very special about him that made me feel so comfortable. It was easy for me to be me, even this raw, vulnerable version of myself. The reality is, THIS IS ME NOW.
I met him with no makeup, no wig and was wearing leggings with a sweater. It was through meeting him, someone who didn’t know me before my diagnosis, that I realized I was still the same fun, caring person inside I’ve always been and although physical appearances can change, that shouldn’t determine my worth (or anyone else for that matter) and it didn’t. He never treated me as if I was sick or different even on those days I was curled up sick on his couch after coming home from treatment together. It was moments like these that opened my eyes to the self-work I needed to do to love myself again. As my hair started to grow, I was uncomfortable with my appearance yet again, and would shave it. I got so used to my ‘lil fuzzy head.’ When you don’t have hair, eyebrows or lashes, people assume you’re sick so that ‘justifies’ the rest of your body changes or so I thought. But as it starts to grow back and you’re in that awkward phase, you just look a little weird and I didn’t want to be judged. I started to wear my wigs more and more. I thought putting a wig on my head would solve everything, and I’d have a sense of self and femininity back! WRONG. Does it look like a wig? Do people know? Are they staring at me thinking I have a wig on my head? What if it falls off? Do I look funny? Is it more of a neon sign that I’m a cancer patient? It was never-ending thoughts and all I wanted was to hold onto some type of normalcy that I had before cancer. I just wanted to blend in and be normal again! The more I tried to fit into that box and put that pressure on myself, the more uncomfortable I became.
The flip-flopping of emotions are exhausting. I’m doing my best to refuse to be a prisoner to cancer and the stigma. When you feel so much pain, you have a choice. You can allow it to take over and swallow you whole or you can channel it into drive. Let the pain motivate you, to push you forward. Cancer happened. It has changed the way I live my life. I truly live for each moment, I don’t dwell in the past and I don’t over plan for the future. I focus on the things I can do and work more towards the ‘whens’ will come when they come. Cancer took away a lot of things from me, some I can control, some I can’t. It also gave me a lot. By no means can I say I’m happy about my diagnosis, but I am grateful for the deeper sense of appreciation that I now have. I have a new lease on life, an even more sensitive heart, a more intense drive and determination. I’m motivated by others who can’t, I do it for them and push myself to go harder in their honor. And it probably goes without saying I don’t take any moment for granted. Ever.
Having an outlet like this to share bits of my story has given me a chance to help others. If I can change or help even one life, all the hardships will have been worth it for me.
I’m finished with all treatment. I’m happy to report that a week ago I had my first follow up breast MRI which came back negative, yay! My main focus now is on healing, both physically and mentally. Currently I’m out on the west coast soaking up the sun while working on some exciting projects coming soon, one being The Gesumaria Foundation, which I’m really excited for the opportunity to give back and make a difference.
You asked my response to ‘What does a cancer patient look like?’ Well it looks like this.
A former fashion model, a dog mom to a Leopard Catahoula, Rufus. A self-proclaimed girly tomboy. Lover of cars and hockey. An animal whisperer, serious snacker, shoe shopping adventurer. It looks like… just me.”
This story was submitted to Love What Matters by Raphaella Gesumaria from New York City, NY. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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