I Hate Ewing's Sarcoma — My Cancer Journey So Far

As some of you may or may not know, after nearly nine years of being cancer free, I was diagnosed this past March with a rare type of bone cancer called Ewing’s Sarcoma. It has been quite a bumpy journey so far that has taken a lot out of me and everyone in my close circle. Shortly after I was diagnosed, I began my chemotherapy treatment which involves one day outpatient with a three week break then five days in the hospital. Overall, I will have to do 14 rounds and I have already completed four. The treatment has been extremely brutal on my body, particularly the one outpatient day, which often leaves me unable to move for two weeks straight. I have dealt with all kinds of side effects from extreme nausea to severe joint pain. I also had to go through the painful journey of losing my hair again. Although it may not seem like as big of a deal as some of the other things I have been experiencing, hair loss was not easy for me. My hair was part of my identity, and losing that, on top of everything else, made me feel even more vulnerable. 

After four rounds of chemo, I had my major surgery at the beginning of this month, which involved taking parts of three of my ribs, taking out the tumor and removing part of my diaphragm. Although the surgery was successful, the recovery has not been easy by any means. I was in the hospital for five days after and experienced several setbacks including a fainting incident and a blood transfusion. I thought chemo was bad, but the pain I have experienced after the surgery is the worst pain I have ever experienced in my life. Because your ribs are connected to nerves, some of the nerves were cut, thus causing a lot of pain that radiates from the left side of my body to my back.

Apart from the pain and recovery, I am also in the midst of another unexpected obstacle. After studying the tumor, my oncologist informed me that the chemo was not being as effective as it should be and that I will need radiation. After four rounds of chemo, 40% of the cancer cells in the tumor should be eradicated, but in my case only 20% were gone. It was really scary news to hear, especially since I have never been through radiation, but I know I have to keep pushing. I met with a radiologist who explained how I would most likely need 28 rounds of targeted radiation, which would last over a period of six weeks and would occur at the same time as my chemo as well. Although it doesn’t seem too bad, I learned that I am at a very high risk for several long term side effects including heart problems and a secondary cancer. Since I am only 24 and have already had two kinds of cancers, I was very concerned about what this would mean for my future. All I wish for is just to be healthy again and to be able to keep living. 

After talking it over with my family, we decided to try and get a second opinion at the Mayo Clinic in Arizona. Although I won’t get into too much detail because most of it I don’t even understand yet, the Mayo Clinic has a certain radiation machine for Sarcoma patients that could possibly lower my risk of long term side effects. We’re still going to meet with them first and see our options before making a decision. But if I did decide to go to the Mayo Clinic, I would have to spend a month in Arizona, which would be hard not being able to be home. 

So right now there’s a lot of unknowns in my life. I know I will need radiation and ten more rounds of chemo, but I don’t know the logistics yet. It is all very overwhelming on top of my recovery from surgery. Everything I have been going through has taken a huge toll on me mentally as well. I have struggled majorly with depression and just feeling hopeless. I just want all of my suffering to end and for me to just go on with my normal life. I constantly grieve the past version of myself. I miss that carefree, happy Caitlyn so much. It’s hard to grapple with why this is happening to me again. I’m so young and I shouldn’t have to be dealing with a cancer diagnosis. The unfairness of it all often gets me down. But I’m trying to keep pushing on. I’ve still been trying to keep busy with work and also coming up with ideas for my own organization, Hopeful Fighters. I want it to be a place where young adult cancer patients and survivors, like me, can go to for mental health resources and a community of people they can talk to so they can feel less alone. Cancer in your 20s is an isolating experience that not too many people can relate to. 

While I have been going through so much, I am lucky enough to have been blessed with the greatest support system. Having my parents close by has been so helpful. They have assisted me so much in managing my appointments, going to my doctors appointments and just being there for me no matter what. Although my sister, Talya, just moved away, she still does everything she can to support me, including flying back just to be there for my surgery. My amazing boyfriend, Daniel, has also just shown up for me in so many incredible and loving ways. I am so grateful to have someone like him in my life and, although this whole thing sucks immensely, he has still managed to make me laugh and smile everyday, even in the hospital. On top of that, my friends have just been so supportive and have gone out of their ways to do things for me. I couldn’t be happier with the people in my life; I love them all so much. They have made this awful situation a little bit better. 

I’m dreaming of the day when I get to ring the cancer-free bell again, but until then, I’m going to keep trying to hold onto every slimmer of hope that there is. I’m praying that it will get better and that I will make it through this, even if it isn’t easy and there are days when I want to give up. I know that I am strong and I will keep fighting.