A Story of Surviving Stage IV Spindle Cell Sarcomatoid Carcinoma-6 Years

by GregP_WN

Our Guest Blog Post today is from  Nicki Goodwin, "NGoody16". She is a six year survivor of spindle cell sarcomatoid carcinoma. A rather rare form of soft tissue cancer. She describes her life before, during, and after her diagnosis. This is her inspiring story in her own words.

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Nicki with her husband, Jeremy, and son, Bryce on his first day of 1st grade(Sept 2017).

I was 34 years old in the fall of 2012. I was finally getting the hang of being a new mom and wife while juggling my corporate career. Things were good. It was the week of Thanksgiving and I decided to take on the ambitious role of hosting that year. I remember being annoyed by a blister type bump on my upper gum, but I brushed it aside after all, I had way too much going on to worry about myself. 

A few days after Thanksgiving I was giving my 11-month-old son a “raspberry” kiss on his chubby little belly and felt a sudden sharp pain in my mouth where I still had that nagging bump. When I looked in the mirror, to my shock the bump had turned into a pea sized blood blister. I was able to get into a dentist the next day. After a quick examination, it was concluded that a piece of food, possibly a piece of popcorn, must have gotten stuck in my gum and causing the inflammation. The dentist promptly removed it and casually mentioned on my way out the door if it returns, I would have to visit an oral surgeon. I was relieved to have that annoyance out of the way as Christmas was approaching and I had much more important things on my mind.

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Nicki and Jeremy on vacation (summer 2018)

The holidays came and went and I continued to carry on with my busy life. I chose to ignore the bump growing back and the new pimple-like formations on the side of my nose. By early March, the throbbing pain convinced me to see an oral surgeon. Even though it had grown back, he had the same nonchalant attitude as the first dentist and guessed it was probably just a minor infection. This time, he had the tissue tested just to be sure and sent me on my way.

It took 22 days to get the biopsy results. During this time I started to wonder if it was something more serious. Questions would race through my head, “Why are they taking so long? Why did it grow back? What if it’s C…?” After entertaining these thoughts for a few seconds, I would always convince myself that it was nothing. After all, I was a healthy, active, young mother. I didn’t have time for any of this nonsense.

Finally, on March 26, 2013, I got a call that the results were in. I was the last appointment of the day and the time in the waiting room seemed to drag on forever. I heard my name called and was ushered into a corner room, the empathetic look on the dental assistant’s face gave me an uneasy feeling I couldn’t explain. The oral surgeon soon appeared with a concerned expression on his face, “How are you feeling”? He said. That’s when I knew this was not good.

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Nicki with her son. (Summer 2019)

I was told that I had a very rare and aggressive form of soft tissue cancer known as Spindle Cell Sarcomatoid Carcinoma. He gave me the number to a local cancer center and instructed me to make an appointment soon as possible. Though I could hear him, I couldn’t believe what he was saying. My body turned numb, my heart was racing, my mouth suddenly became extremely dry. I just wanted to get home to my baby.

On the way home, my best friend and sister called to ask how it went. All I could manage to say is “it’s bad news”. As she pressed me for more details, I read her the foreign type of cancer labeled on the pathology report. It was all too much for me to process. I remember pulling up to the driveway and getting out of the car. My knees buckled and I crawled to the front door. When I managed to stumble inside, my husband was feeding our son in his high chair. He saw the look on my face and rushed over. I collapsed on the floor and uttered the words “it’s cancer”.

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Nicki and her 3 sisters at a fundraiser in her honor (closet to the left, her twin sister Jamie, Nicki, Patti & Joann).(June 2013)

That week, my three sisters and parents rushed to my side. They helped build me up for my first oncology appointment. I entered feeling strong and positive. I was ready for anything they threw my way...that’s when I got the second most terrifying piece of news. I was already in Stage IV cancer and it was so aggressive that I would most likely need a massive resection surgery that involved removing my entire nose, partial cheek and upper lip. I remember sobbing uncontrollably in the office and pleading for it not to be true. “I have a baby to take care of!” I cried. This wasn’t supposed to happen to me.

My world suddenly turned upside down, and before I knew it, I was officially a cancer patient. In hopes of shrinking the tumors, it was decided I would first undergo 6 weeks of the highest doses possible of chemotherapy and radiation. Throughout the treatment, I was showered with an overwhelming amount of love and support. I adapted to my new bald look by wearing cute hats and bandanas, I started seeing a meditation counselor to help deal with my claustrophobia from the radiation mask, I stopped panicking every time I needed to throw up, and the chalky taste of supplemental drinks began to grow on me.

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Nicki post op getting a hug from her twin sister Jamie.(September 2013)

By midsummer, I wrapped up my last chemo and radiation session and was hoping for the best. I was in high spirits when my oncology team conference called me on a Wednesday afternoon to tell me the news I had been dreading. The treatment alone was not enough and the resection surgery needed to be scheduled. Late in the summer of 2013, I underwent a 12+ hour joint cancer resection and reconstructive operation. My nose, partial right cheek, upper lip, one of my front teeth and part of my gum was removed. A forehead flap and “lip switch” procedure were also performed in which a portion of my lower lip was attached to the surrounding tissue where my upper lip used to be located. I woke up unrecognizable to myself and everyone around me. It took 6 days lying in my hospital bed before I got the news the margins were clear.

During a time that should have been filled with celebration, I was more depressed than ever. The mirrors in my house were instantly covered, I was scared to even catch a glimpse of my reflection passing by a shiny surface. I had my life and my sweet baby boy but couldn’t feel anything but sorrow.

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Getting her dressing changed by her husband.(Nov 2013)

Four weeks later, as I was in my favorite stained pajamas and tattered robe my mom came to check on me while my son was napping. She looked at me and her eyes grew wide, “honey, your lip is hanging from your face”. My lip switch had failed. I was rushed to the hospital holding onto the piece of tissue I once called my lip. My surgeon was able to attach it back to my lower lip, but told me he would no longer attempt any reconstruction on my radiated face.

Shortly after, I underwent my second and final round of chemotherapy. My body in its weakened state reacted much worse this time around. I was hospitalized twice with neutropenia and needed multiple blood transfusions. I was forced to get a feeding tube and a port-a-cath in my chest. I hid under a large surgical mask and reserved a private chemo room to avoid people. I wanted to be alone and miserable, however my pity party plan didn’t work. My sister (who happens to be the funniest person I’ve ever met) never left my side. Friends, family and even off-duty nurses hung out with me for sometimes hours as I sat in my infusion chair. To my surprise, I began feeling human again. They wanted to talk to me, in spite of my disfigurement. This was a huge turning point in my journey.

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Taking a nap during second round of chemo (Dec 2013)

As 2014 rolled in, my newly found optimism was put to the test as I struggled to find a surgeon who was willing to take on my case. When I was fortunate enough to get into contact with one of the pioneers in nasal reconstruction, I thought all my prayers had been answered. 

Although he told me I was one of the most “daunting” cases he had ever seen, after an in-person consultation he agreed to take me on. Just as I was in the midst of celebrating, I was hit with another roadblock when my insurance company denied covering his services. The convoluted appeals process took weeks, with countless heated phone calls and letters before I finally received news the surgeries would be covered.

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Nicki enjoying a sissy date with her twin. (July 2019)

That summer my reconstruction was well underway, or so I thought… a radial forearm flap surgery was performed first, three months later I underwent an axillary flap surgery. As I did my best to recover, I started to grow concerned about the way things were being handled. The doctor I had just fought so hard for my insurance company, had not even performed any of the reconstruction. His office had one of his peer’s step in while he “oversaw” the operations. This, along with several other factors led me to the difficult decision to momentarily end my reconstructive journey.

Once again, my family and friends rallied behind me. Their support, along with my son who was now an active toddler kept my spirits up. Whenever I was having a bad day, I would look at my little boy’s sweet face and know there was a light at the end of the tunnel. He was my motivation to keep on going through the fear of unknown.

Nicki And Sister Patti In Arizona Fall 2015

Nicki and her Sister Patti in Arizona. (Fall 2015)

This time around, I learned to trust my gut more so than ever before. I researched reconstructive surgeons based around the world. I received trusted advice from physicians I had met along the way, and I battled with my insurance company yet again. I wasn’t going to let desperation or convenience alter my selection process. This time, I had control of the situation and it was an empowering feeling.

In the beginning of 2015, my reconstruction resumed with the man who would ultimately put me back together. Since he was based 3,000 miles away, my sister and I racked up a lot of frequent flier miles and I became a regular with the TSA staff. Due to security issues, they needed me to remove by mask each time I flew. I was very uncomfortable with the thought of exposing my “under construction” face in public. By this point, I had cheek expanders on each side and a forehead expander. I knew how obnoxious I looked, and we did our best to make light of the situation. My sister would call me squirrel because of my puffy cheeks, and I would call her turtle because she was always running late. The staff accommodated me with an enclosed room. During this awkward exchange, I soon learned it was best to close my eyes as to avoid the look of horror on the agent’s face.

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Nicki and her son on the beach. (Summer 2014)

As I reached the stage of my reconstruction that required more back-to-back surgeries, I packed up my things and moved across the country with my now three-year-old son, sister and mom. It was tough being away from my husband, but I was excited to start seeing the light shine through. I underwent several more procedures including a radial forearm flap on my other arm and a rib graph. My tolerance for pain had become quite high, but the rib surgery was one of the more difficult ones. The act of merely breathing was hard. Up until this point I did my best to be a fully present hands on mommy, however that surgery put me out of commission for a few days.

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Nicki in Arizona mid reconstruction. (April 2015)

By March of 2016, I was finally able to remove my mask for good. My reconstructive journey had come to an end after 3 years of ups and downs! I moved back home and started my new normal. Exercise, therapy, humor, and of course the unconditional love of my family and friends helped me regain my footing. I started looking in the mirror again and liked who I saw. I was a woman whose light was capable of blasting through a depth of blinding darkness and that’s someone my old reflection would have never known.

Do you have an inspiring cancer survival story to share? Contact us and let us help you! Your story can inspire thousands by showing them that you CAN survive a cancer diagnosis (or three) and so can others. 

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