I'm a Survivor, I'm Not Gonna Give Up
To me, an individual becomes a survivor the moment they receive a diagnosis. To others, it may be when they complete treatment, receive surgery or are declared in remission. No matter where your stance is on who a survivor is…
we’re out there – over 18 million of us and we never stop surviving.
I had been finding lumps in my breasts since 2016 and have a very long history of family members with all types of cancers, especially breast. After finding out that I had very dense, and cystic breasts, I wanted to have a preventative mastectomy to try and avoid going through the same thing I saw my family members go through.
Unfortunately, I was unable to receive such a procedure without having to pay for it out of pocket. Fast forward to the COVID-19 pandemic and I found a lump, but I brushed it off as being just another cyst.
When that “cyst” stayed put, I could tell something was wrong.
Immediately I contacted my obgyn who thankfully was able to get me in as soon as possible to check it out. He ordered a scan as a precautionary measure, but tried to reassure me that it was probably just another one of my cysts.
When the radiology department told me I’d have to get a biopsy, that’s when I knew for certain that this wasn’t just a cyst anymore.
On August 17th, 2020, the day before my 2nd wedding anniversary my doctor called me to confirm that I had Triple Negative Breast Cancer.
I don’t even really remember what happened after that. I guess the shock, anger, and sadness hit me like a pile of bricks.
I do remember calling my loved ones to tell them the news and assuring them that I was going to be fine, “they found it early, I’m doing OK”… ya know, all the things you say to people when you feel like you need to be strong for them so they don’t lose it themselves.
I spent a lot of time trying to decide whether or not I wanted to let the social media world know and it was a difficult decision to make. The last thing I wanted was pity, or sadness coming from all different walks of life. Obviously, I leaned more into sharing my experience with the social media world with a promise to myself to use it as a tool to help others know they’re not alone. I think if I had kept my diagnosis to myself, I would have had a complete meltdown because not being able to go anywhere, do anything, or be with anyone during covid was already making us all go mad.
Making the choice to tell pretty much the world helped me to feel like I was back in control of things, and that’s what we as humans desperately seek – control. So to take that step further (thanks to my in-laws), I got my eyebrows tattooed. Yup, tattooed.
We all know the quintessential cancer look – completely hairless, bald head, no eyebrows… well I didn’t want that. My thought was that if I looked sick, then I’d sure as shit feel sick, so I took the power back into my own control and had my eyebrows tattooed onto me so that no one would be able to tell they were fake (not like we were allowed out to see other people, but ya know).
When I finally decided on my medical team, they told me I could try and cold-cap – but it was expensive and couldn’t guarantee my hair wouldn’t still fall out. Thinking of having an ice helmet on me during treatment wasn’t something I found appealing, so I called my high school friend Nicki (who had been doing my hair for quite some time) and asked her if she’d help me with a special project.
I always joked around that I just wanted to shave my hair off when she asked what I wanted to do with my hair, well now it was time to put my money where my mouth was. I told her that if I was going to lose my hair, it was going to come off in the brightest pink she could make it.
My hair went from a light brunette that was a little longer than shoulder length, to this magenta bob – and I freaking LOVED IT. This is exactly what I needed to give myself that little pick-me up and to prepare myself mentally for the fight of my life.
Now that I had my mental health in better shape to tackle active treatment, it was time to take the first step in actually combatting this cancer diagnosis, and that was to undergo fertility preservation. This meant I’d have to go through the beginning part of an IVF cycle to harvest my eggs and create however many embryos we could before starting chemotherapy.
From someone who never knew if she even wanted to have kids, to being thrown into this tsunami of emotions was exhausting.
Luckily, my cycle was pretty much on par with how IVF is conducted so I spent multiple days having my family members shoot me up with all these hormones to basically maximize the amount of viable eggs they could retrieve when it came time for “ovulation.”
When I started the IVF process my oncologist told me as soon as I was done I could start treatment. However, I don’t do well with hormones. I never did. I had to be taken of birth control multiple times so I was worried that the influx in all these hormones then the crash of removing them all would send me into a spiral.
I decided to take a week in between my egg retrieval and start of treatment to have a little getaway with my husband and 2 pups. We wanted to use this time to instill some peace and calmness into our lives before this whirlwind of treatment would commence.
Since my husband is a testicular survivor, he knew exactly what I was going to be in for when I started treatment and having him in my corner was really a massively positive impact on how I was handle my course of treatment so well.
On our mini retreat, we got the news that we retrieved a lot of eggs, but only 2 were viable for embryo creation and that they were still waiting to see if both would be able to make it through the entire freezing process.
I was devastated.
This was the only chance we’d get to create an embryo before starting treatment and I thought we’d get more. Even though I never knew if I wanted kids, I felt though now this option was ripped away from me and it was no longer my choice. I felt robbed.
We spent the rest of the retreat waiting for the call to confirm how many little vanilla ices we had – we ended up with 1.
This was a hard pill to swallow and not what I needed mentally before starting treatment, but the risk of going through another IVF cycle and delaying my treatment more just wasn’t in the cards – so we pushed onward and prepared for what lie ahead.
On September 23rd, 2020 I waited in the waiting room of Memorial Sloan Kettering, masked up, hand in hand with my husband and received my very first dose of Zoladex (to help try and preserve my fertility), Doxorubicin (Adriamycin) & Cyclophosphamide (Cytoxan) aka The Red Devil.
I was thankful to be allowed at least 1 person with me while receiving treatment, many other treatment centers at this point still weren’t allowing visitors in due to covid. They loaded me up with my pre-meds and lots of hydration, then the nurse came in looking like she was about to walk through chernobyl and asked me if I was ready. I just kept thinking to myself – “jeez, she’s got a freaking hazmat suit on and I’m getting this shit injected directly into my veins… great”.
Once the red juice had pushed all the way into my veins, the needle was removed and I was told I could go home but to make sure I flush my toilet a few times and don’t be alarmed if it’s a little discolored. I was also told that I’d have to try and keep my distance from anyone who’s pregnant and my dogs until the chemo is fully out of me. She reminded me that I need to stay hydrated and to take my anti-nausea medicine later that night to stay ahead of any nausea that may be lurking near by.
As I got up, I felt a little light headed but full of energy (thanks steroids). I decided to use this time to be productive because I knew I’d come crashing down at any moment when the steroids wore off and that inevitable chemo pain would start to creep in.
Man did I crash and burn that first night.
I remember being on the phone with my mom and everything just went super loud and bright – think of it like the worst migraine you could imagine. All I wanted to do was curl up into a ball and sew my eyes shut. I had been chugging so much water to try and get this chemo out of me as quick as possible and I could feel my stomach just doing flips, but I couldn’t throw up. Luckily my mom is also a (now) 2x cancer survivor so she immediately told me to go lay down and she’d call my husband later to check in on me.
The next day I felt better, but still really crappy. I was veryyyy weak and tired, it took every ounce of energy I had just to get out of bed and go into the bathroom. I couldn’t even smell food let alone look at it. As the day went on my symptoms got worse, the anti-nausea meds weren’t helping and my headache was like someone cracked my skull open and started squishing my brain around.
I had to contact my oncologist to let him know how I was feeling and I got a different prescription for anti-nausea to try. I never threw up though. My husband referred to this as chemo stomach, where you really want to throw up but at the same time you don’t. It’s not full of something you want to get rid of but it’s not empty where you need to eat – just bleh.
I could handle the chemo stomach, but what I couldn’t handle was my head. I could barely keep my head up and my eyes open, the pain was excruciating. It even got to a point where I was laying down and went to open my eyes but everything was blurry. I told my husband what I was feeling and when I tried to get up to go to bed I almost fell over. Since it was a weekend I couldn’t go to see my oncologist, the on-call nurse line told me to go to the ER. Great… go to the ER during a global pandemic, cause that’s what someone with almost no white blood cell count wants to go and do. However, my need to feel better outweighed that risk, so we went.
I was there for hours, on my own floor, in my own room, away from anyone that came in complaining about covid symptoms. Turns out that I was severely dehydrated and a scan of my head showed a Chiari Malformation I. Wonderful.
Now I had to be even more careful with my hydration levels, which meant that the day after I get my infusion, I’d have to go back to the treatment center and get a round of hydration & my nuelasta injection. I also started seeing a pain management doctor that helped prescribe some much better meds to help manage any side effects from the chiari I’d have during treatment. Smoking also helped a ton with my side effects, although with my anxiety I had to do a little creation of my own to help keep that at bay.
It would take me just about a week to start to feel better, and I’d use that time to go down to my gym, workout out for hours and then binge watch shows with my husband.
The week always went by so quick, and then it’d be time for another infusion.
I went through 4 rounds of AC before switching over to Taxol – a whole different chemotherapy beast.
During these next 4 rounds, I’d be given a. benadryl and drip the chemo slowly over the course of 4 hours all while having to ice my hands and feet.
How ironic is it that I wanted to avoid cold capping, only to have to keep ice gloves on my hands and feet? Cancer is a d*ck.
The object in having to ice your hands and feet was to avoid developing hand & foot syndrome; aka neuropathy. So for 4 hours, while I tried to sleep from a benadryl coma, my hands at feet were getting iced out.
The icing worked though! I didn’t really get any loss of feeling in them, no peeling and continued to have full functionality.
At the 3rd round of my infusion, my liver enzymes were spiking and I had delay my round of treatment to protect my poor little detoxing agent. I wasn’t happy about that, because I really wanted to be done before the new year so I could start 2021 with the cancer out of my body. Cancer doesn’t really care what you have planned though, so I took the L on this one and waited patiently for my numbers to level out.
I officially finished my iv infusions on January 6th, 2021 – just 3 days before my 34th birthday.
I was absolutely elated, taxol was far more manageable than the red devil and I couldn’t wait to get to that operating room to receive the mastectomy I had been wanting to receive for years.
My little sister flew in from colorado to make sure that my husband and I had enough manpower to help me recover. Little did we know something else was flying in that would threaten to delay me yet again.
February in New York is a pretty volatile time when it comes to mother nature, and this year was no different. We were expected to have a nor’easter the day before I was supposed to go in for surgery. yeay.
I must have called my surgeons office like every hour to make sure that my surgery was still on. I didn’t want another delay, I wanted to get this thing out of me once and for all.
After the 100th time I probably called their office, I was assured that my surgery would still happen and that the dr will see me bright and early. To keep me from going insane my sister and I spent the rest of my pre-surgical day playing in the snow with my dogs.
We literally got so much snow and I never stopped to even think about how i’d GET THERE in the morning.
My surgery was to take place in New York City and I live out in Suffolk County on Long Island. About an hour way on a good day – so how the hell were we going to get into the city when the trains aren’t working and there’s almost 2 feet of snow.
Thankfully my husband is a government employee and assured me they were doing everything they could to get the roads cleared and the salt trucks out.
He came home later that night to tell me that the roads looked good and I really should get some sleep so I can get up bright and early. We’d have to leave a little earlier than expected to make sure we’d have enough time, just incase there were any hiccups along the way.
The sun wasn’t anywhere near coming up when we were on the road and heading into manhattan.
The amount of anxiety coursing through my body was insane and I couldn’t have anything to eat or drink due to anesthesia. By the time we got to the hospital it was a lot of hurry up and wait, but I was ready.
I opted to have a nerve block during my double mastectomy at the recommendation of my medical team and close friend (who’s a pain management nurse) so that was the first thing I had to do while waiting to be rolled into the OR. I said my final goodbye to my husband who was lucky enough to wait with me during pre-op and then I was very groggily on my way to the operating room.
When I finally woke up, I was in this beautiful room that had floor to ceiling windows that faced the 59th street bridge. A bridge that is very near and dear to my heart from living right by it for almost 10 years when I was in my 20’s.
As I opened my eyes I could feel the weight of my eyelids keep trying to shut, so I’d drift in and out of consciousness until the nurse finally woke me to make sure I was ok. Apparently I was sleeping a lot more than normal. As soon as she woke me, I felt it.
The immense amount of pressure on my chest. I could barely breathe and the only person in the room with me was the nurse. No husband, no sister, no friends, I was alone. I guess she could realize I was about to freak the f out, so she reminded me I just woke up from surgery, the doctors all said I did really well and to just relax – if I needed anything she was just right outside the door. She pointed onto my little rolling table to show me that my stuffed animals my brother and sister gave me were right here with me, along with my phone.
Thank goodness for video calling.
I was so weak though, I could barely raise my arms to get the phone off the table that was only about an 1′ above the bed. As soon as I could safely get it in my hands, I called my husband. When he told me they got everything out and clear margins I started to cry, then wince, then cry in a vicious circle because I still couldn’t breathe. We kept the call short because he wanted me to rest, and for the first time since August 17th, 2020 I finally felt like I could. So I slept.