Spotlight: Christopher Livezey
My story begins almost 16 years ago, when I was 14 years old. While puberty can make you clumsy as you grow into your body, I noticed that I was tripping and falling much more than I should be. My parents took me to the doctor and after what felt like an agonizing amount of tests, I was diagnosed with Ewing's Sarcoma and told that I had a tumor wrapped around my spine from my C7-T2 vertebrae. I still can remember sitting in the oncology clinic seeing the doctor talking, my mother crying, and me just feeling numb. It felt like I was having a nightmare. While I was awake.
The next morning I was taken to the OR to have the tumor resected. The surgery went well and I had very little physical deficits that I needed to overcome with physical therapy. It wasn't anything anyone wants to go through but the year's worth of chemotherapy and radiation make the tumor resection seem like a trip to Disneyland. I didn't know if was physically possible to vomit that much and radiation burns in my throat felt like I had swallowed razor blades and drank a glass of lemon juice. Despite all of this, the whole year still feels like a blur and I don't remember large chunks of time. I was so excited to be done with chemo and be able to go back to my normal life.
For five years, I got to live a normal life. I got to finish high school. Hang out with my friends. Doing all of things I wanted to do. But I started noticing that I was getting dizzy and lightheaded when I bent over and I was having rectal bleeding. I was easily fatigued and short of breath. But I am a stubborn mother fucker and I just kept working and making jokes about everything. Finally, one of the oncology clinic nurses saw me and told me that I absolutely HAD to come into the clinic to get labs drawn the next day or she would drag my ass there...I don't blame her for being alarmed...my lips were bluish/purple because my hemoglobin was so low. So, I went back to the clinic. Got my ass chewed out by the doctor and nurses. Got labs drawn. Got multiple blood transfusions....and was diagnosed with acute myeloid leukemia. Fuck.
In comparison to my previous treatment, this round of chemo was pretty mild. The nurses and oncologists were amazing and ran my chemo at night so I wouldn't be as nauseous. I also only needed five months of chemotherapy this time. I did have to get a bone marrow transplant, which sucked. But again, not nearly as bad as eating razor blades and drinking lemon juice. So, eight months of torture to be given a second new lease on life...not the worst.
I settled back into my new normal of life. Went back to work. I went to college to become a CNA so I could give back to the field that has saved my life twice now. And began working with pediatric hematology/oncology patients. I wanted to help these kiddos know that this was not the end and that there is light at the end of the tunnel and that they cannot give up fighting. It helped the patients to know that I had survived and was making the most I could out of life.
For four years, I got to have a "normal" life. Making friends, making an impact on those I care for, and living life to my fullest. But, my demons came knocking once again. In 2014, I relapsed with Ewing's Sarcoma in my left lung. Third times the charm, right? Wrong...I was so fucking angry. I just wanted to watch the world burn. This wasn't fair. I didn't understand why this was happening to me again. But, I decided to go with treatment for the third time. Which meant I had to put my life on hold, again. For the next year, I had to undergo chemotherapy and have a section of my lung removed. I relived my first chemotherapy experience...I forgot how much it was humanly possible to blow chunks. But like a cockroach, I survived.
Fast forward to 2018...remember how I said that "Third times the charm"? I was fucking wrong...Ewing's showed it's ugly face again and this time it meant business. And I had to make some fucking scary decisions. Do I continue to fight this or do I just live my best life until I take my last breath? One thing made this decision easier for me, I had just started to see the love of my life and current fiancΓ©. She had just gotten out of an 18 year abusive marriage and was willing to give love a shot again and I was not going to throw that out for my own personal reasons. I was also head over heels for her and I wanted to spend more time with her.
This round of treatment was not a walk in the park...this tumor was located at the opening of my left lung where trachea branches off to connect to my lung. There was no way we could save the lung...I had to have the entire lung removed. Due to the massive amount of scar tissue from the previous lung surgery this one could not be done laparoscopically. The surgeon had to open up my entire left side to removed the lung in chunks, as can be seen by the scar in the pictures I attached. I went under the knife terrified that I wasn't going to wake up. And when I did wake up, I had to learn how to breathe all over again with just one lung. And that shit is weird. I felt like I was drowning for awhile. I wish I could say that this was the worst part but, the worst was yet to come.
During my recovery processes, I was confused and extremely fatigued. I wouldn't eat. I could barely stay awake. Something was wrong. And I was too out of it to communicate what was going on. The nurses tried to advocate for me but they kept getting brushed off. Finally, a surgery resident that I had worked with was on rotation and came to see me. She took one look at me and knew something was wrong. She ordered an ECHO and discovered I had a pericardial effusion. Had this gone undiscovered for another day, I would have ended up in cardiac tamponade and would not still be alive to share my story.
To make matters worse a few weeks later I was still in the hospital recovering from surgery, a friend stopped by to see how I was doing. While we were visiting, I got up to use the restroom. My friend gasped and pointed at the bed. There was an outline of my body that was made out of blood. The surgery had caused a massive amount of swelling and the surgical site opened back up because of this. Over the course of a couple weeks this progressed further and further along, until most of the wound was opened back up. My surgeon took me back to the OR, cleaned out the wound and slapped a wound vac on my back. After another week, I was discharged. Unfortunately, this was short lived as my wound care was not carried out properly by the home health nurses. I had a raging infection in my wound. This not only resulted in a delay of my chemotherapy but resulted in a 3 month long process of receiving wound debridement and revision in the OR and a wound vac dressing changes multiple times a week. Despite all of this shit being handed to me, I still managed to heal and take as much chemo as I could financially manage (I used to be a St. Jude patient and all of my chemo treatments costs after insurance was covered by them but since this was my fourth rodeo and I was in my late 20's, they graduated me so they could focus on treating other younger patients. Which left me with weekly costs of $700.00+). But most importantly, I kept the woman of my dreams by my side. And man, is she amazing. In the midst of picking up the pieces of her life, raising her son, working full time, and going to grad school, she took care of me. And advocated for me. And showed me what true love is.
Life is not a given. We cannot choose the hand we will be dealt. We can only respond to what is given to us. It's up to us whether we give up or fight like hell. Giving up is easy, fighting... fighting is fucking hard, fighting is scary. If I can give any advice about what I have learned through all of this shit is, take your physical and mental health seriously. And don't take them for granted. All of the surgeries and chemotherapy have taken their toll on my body. Before all of this, I took my health for granted. At 14 years old, I was 360 lbs. I'm now 31 years old and weigh 250 lbs. I still have a long way to go but I am still working towards my goals. The last two rounds of chemo and surgeries have slowed me down and I have had to re-work how I do everything in the gym. My cognitive function has taken a hit from all of the chemo. My muscles have been cut and I'm missing a lung. I have had to learn how to brace myself differently, breathe differently, and lift differently. But when looking back at the last 15 years of my life, this ain't nothing but a peanut.