Surviving Cancer and Heart Failure — The Battle No One Prepared Me For

Something they don’t tell you about when you’re diagnosed with cancer is that it’s all consuming. Cancer takes over your thoughts, your relationships and your life in general. It’s like you don’t just exist as yourself anymore; you exist as you and the cancer. All that is true and more to this day for me especially with what has transpired for me over the past few months.

After finishing radiation and my 10th round of chemo in the hospital at the end of December, I was not feeling like myself even more so than usual. I felt bloated and I was rapidly gaining weight. None of my clothes fit me anymore and I couldn’t even look at myself in the mirror. Aside from the unwanted weight gain, I started becoming very short of breath. Not just like I couldn’t walk up flights of stairs but more so to the point where I couldn’t walk to my bathroom without nearly falling over. Despite going to the ER a couple of times, the doctors just believed that I was having an adverse reaction to the radiation.

Finally, on January 7, things took a turn for the worse. At this point, I could barely move out of bed and I needed a wheelchair to get around. While I was laying in bed, I just knew that something was wrong. It was just this gut feeling that I couldn’t ignore. Like a voice inside my head was telling me that I had to do something quick. My mom ended up calling 911 — which turned out to be the thing that quite literally saved my life.

When I got to the ER, everything quickly became a blur. My bloodwork came back showing I had an extreme amount of fluid in my body and that my heart wasn’t working properly. I didn’t know it at the time until after, but I was in cardiac shock. The shock started shutting down all of my organs from my kidneys to my lungs. My heart ejection fraction was less than 10% when a normal person’s should be above 50. I don’t remember much, but a nurse tried to calm me down by playing “Shake It Off” by Taylor Swift as I was waiting for all the imaging and holding on to my amazing boyfriend’s hand for dear life while somehow questioning why he left work early. I kept trying to think of happy things like all the times I went to Santa Barbara with my family, something we used to do every year growing up. As sad as it may sound, a part of me just accepted that it was my time to go — no matter how much I didn’t feel ready to leave everyone I love. All the sudden a horde of doctors barged in and then it went dark.

By some miracle, I woke up in the ICU. I looked down at my right leg, which was all bloody and torn up, and realized I was connected to an ECMO machine and on dialysis along with a pole with over 20 medications. The doctor told me it was a miracle that I was alive after what had happened. I was told that they didn’t know how long I would be there, it could be months, but I needed to take things one day at a time. I needed to believe that I would get better.

Being in the ICU is hard, especially on an ECMO machine when you know that it is the one thing keeping your heart pumping. Everyone tried to make the ICU a better experience for me, buying me all kinds of amazing gifts, decorating my room and getting me to do arts and crafts. But all I could do was just sit there in shock every day. My chemotherapy treatment had literally almost killed me even though it was meant to save my life. Each day was an eternity in the ICU, like I was trapped in a prison. Meanwhile, LA was quite literally burning down right outside my window and I was helpless.

I ended up being on ECMO for two weeks, which truthfully, is worse than chemo. It’s hard to put into words the amount of pain I experienced while attached to that machine. I spent another week in the ICU before moving to a regular room where I got a little more freedom to walk without all the nurses — and to see my dogs! That probably was the highlight of my experience, minus DoorDashing dinner every night and watching Breaking Bad with my boyfriend (even though we technically weren’t supposed to eat together in the ICU).

Overall, my hospital stay totaled up to nearly five weeks. By the end, I was so mentally exhausted and angry. I was so tired of feeling like I had no control over myself. Even though I knew I was supposed to be happy that I survived, I was the most depressed and suicidal I had ever been in my life. I also felt this overwhelming embarrassment that I, a 25-year old girl, experienced heart failure, which is something you’re “supposed” to deal with when you’re older. The doctors later told me I could be done with my cancer treatment because my last scan was clean and they didn’t want to cause any more harm to my heart.

Life still feels and looks differently for me. Every morning, I have to take my weight, my blood pressure and my heart rate. Throughout the day, I also have to take several medications, some of which I probably will stay on for the rest of my life. I’m still on a fluid and salt restriction. It may seem like a lot, but I feel myself getting stronger every day.

I know I’m supposed to be happy about being over such a hard period of my life, but I just feel scared. I want to trust my body that I’ll stay healthy, but how am I supposed to after it has let me down countless times? I barely know who I am anymore. The Caitlyn I was before Ewing’s Sarcoma is not the same girl as I am now.

Throughout the past year, cancer has consumed everything from my body to my identity. But for the first time in so long, I'm trying to learn what it's like to not have it exist at the center of my life. I'm learning to just be myself again — or rather finding out who I am in this new version of myself. Somehow, I'm also going to Santa Barbara in May. Maybe things do get better — it will just take time.