Meet Casey: 3-Time Acute Lymphoblastic Leukemia Survivor & Cancer Coach

On Friday, February 14th, while sitting in the ER, I was diagnosed with acute lymphoblastic leukemia at 31 years old. I actually think I blacked out when I heard those words. Then I looked at my now ex-husband and asked, “What does that paper say about cancer?” This paper was just a Google printout with some basic information about leukemia. 

I was immediately admitted to the hospital for the next 28 days. My whole life as I knew it was over. My treatment protocol took almost 2 years and consisted of an aggressive regimen of chemotherapy, which had me visiting the hospital for infusions almost 3 or 4 times a week.

Cancer became my world.

Then, four months into treatment, I had an allergic reaction to the chemotherapy. This ended up leading to me having seizures and a stroke, which left me temporarily paralyzed on my left side. So as if chemo wasn’t hard enough, I also had to spend 2 weeks in a rehabilitation hospital.

Once I learned how to walk, talk, eat, and use my entire left side well enough again, I was able to leave. For 8 weeks straight afterward, I had to go to rehab for 3 hours a day, 5 days a week, to gain back as much function as I could, all while still going through chemo. I wasn’t in remission yet. 

I was so beyond desperate for normalcy in my life and decided to go back to work way too soon. Shortly after returning to work, I did reach remission. So my focus went into working, finishing treatment, and trying to be normal as best I could. At the end of July the next year, I was finally done with my treatment. To say the least, I was relieved.

Unfortunately, this was just the beginning.

7 weeks later, I relapsed. My medical team readmitted me to the hospital, telling me that my body was no longer responding to chemotherapy. My options were either a clinical trial or immunotherapy.

I decided with my husband to try the immunotherapy first since it was the least aggressive of the two options. My medical team sent me home with a fanny pack for a 24-hour, 3-day infusion pump. Within 24 hours of being sent home, I went right back to the hospital with a cytokine release storm. My body started to shut down, and I spiked 105-degree fevers for 3 days straight. I remember nothing from this time period.

Once my fevers finally broke, I began the clinical CAR-T cell trial. To participate, I had to get every test under the sun, which took months. I spent my anniversary, birthday, and Thanksgiving waiting in the hospital. It ended up being all for nothing because the clinical trial was shut down.

Now, my only other option was another clinical trial that was full. I waited, and the doctors kept me alive with blood and platelets. After 68 days, I was finally allowed to go home, with my moonshot already in motion. I went home with a letter of compassion written to the drug manufacturer and the FDA for immunotherapy that they thought might work, but that was created for an entirely different cancer than mine. Literally my Hail Mary moment. 

I went home and did what I think anyone else would do. I didn’t go on a fancy vacation. I didn’t have a “Make-A-Wish” granted. I went home and cleaned out closets. I spent time with friends and family.

I spent that Christmas thinking it was my last, soaking in all the moments, and trying to hold onto memories.

Well, I ended up being approved for the immunotherapy that saved my life: Inotuzumab. After four rounds, I officially reached remission again. The next step in my treatment was a stem cell transplant, so I went back to the hospital to get it. After even more useless chemo and 10 rounds of total body radiation, I was all set to have my stem cell transplant. Thankfully, my brother was my 100% match and donor.

On the day of the transplant, I was nervous, scared, and just honestly preparing for the worst. I remember that day, but it was such a blur. After another 32-day inpatient stay, I was set to go home but would still have to stay isolated for 3 months due to the risk of any infection becoming life-threatening.

After my isolation period, I was finally able to go out and have lunch with friends. I remember being so ready to go back out there but still feeling nervous. The entire lunch lasted only about an hour, but it completely exhausted me. I returned home and immediately took a nap. I thought I was recovering well and that my life would be back to normal soon. 

6 months after my transplant, the doctors told me that my cancer was back again. This news broke me. I didn’t have any fight left. The only thing that got me through it was my dad and family. I couldn’t give up on them. My medical team told me my choices were another four rounds of immunotherapy or another stem cell injection. The thought of doing either all over again just exhausted me. 

They eventually settled on doing immunotherapy first to see what would happen. Thankfully, those four rounds put me back into remission to this day. Every time I see my oncologist, she puts her hand on my shoulder and says, “Baby, I am just glad you are still here.” If the situation was that serious, no one let me know, that’s for sure. 

When she finally told me, “You can go live your life, you are okay,” I looked at her like a deer in headlights. I had no clue how to do that. When I was done with treatment, I could not have been more relieved to be done with the toxic chemicals. But that, for me, is where the work began. I was beyond exhausted, and my medical team was telling me, “Just go live, we will see you at your next appointment.” Something inside of me started to panic.

I was really good at being in treatment and had no idea what this new normal was. I had no idea what it meant to live life again. For years, I had concentrated only on not dying. Now, I was scared, waiting to hear the words “Your cancer is back” for a fourth time. I couldn’t imagine a life without cancer, let alone know how to live it.

Don’t get me wrong, I was relieved to hear that I was prepared to go back to living life again. But this time, I wasn’t celebrating. There was no bell to ring, no balloons, no acknowledgment. I think no one wanted to trust that it was actually happening.

So I did what so many of us do. I Googled “Cancer treatment ended, now what?” I expected or at least hoped to find answers, but there really weren’t any. I was left confused, angry, and overwhelmed with what to do. At almost 35 years old, I was post-menopausal, 30+ lbs overweight from the cancer drugs, and just tired. There were no answers to what I was feeling or how to stop feeling those feelings.

I wanted to look like a strong, badass survivor. Instead, I was crippled with fear, more anxiety than ever, and completely unprepared for the intense emotional waves I was feeling. I wanted to feel grateful to be alive, but I didn’t.

I was angry.

I kept wondering, why did this happen to me? I was exhausted. One day after coming home from work, I had a nervous breakdown. I fell on my knees on the kitchen floor in front of my husband at the time, ugly-crying because I just wasn’t me anymore. I had no clue who this new person was.

My husband didn’t know what to do after I grabbed all the painkillers from my med box and locked myself in the bathroom. I didn’t see any hope in my future. I was miserable, but didn’t think I could escape that feeling. I was so strong the whole time I was in treatment, but was completely failing at life afterward. 

As I cried into my couch pillow face-down that night in front of my dad and my mother-in-law, the only thought going through my head was, “This is so embarrassing.” I kept asking “Why can’t I get my sh$t together?” I couldn’t live this life. 

While sobbing into a pillow that night, something just clicked in my head. “ENOUGH. You are going to do what it takes to figure this out, so put your f$cking big girl pants on and handle it.” I thought I was supposed to be going back to my old life, but it was just making the situation worse. The next day, I went to “work” even though everyone thought I should stay home. I went, not to work, but to map out my plan.

I wanted to get my life back. 

I wanted to figure out how to get rid of the fear, anxiety, anger, overwhelm, and weight gain. I had to regain the control I lost. I had to find more purpose and meaning in all of this. I dove deep and started researching, talking to experts, reading every self-help book I could find, attending a healing retreat I couldn’t afford, double-downed on therapy, and kept searching for more answers. I was on a new mission.

To this day, that mission fuels my fire. I wake up every day and say to myself, “How am I going to help someone who is where I used to be?” The guilt I feel now isn’t because of working or surviving but because of who I am NOT able to help and reach. Helping people is my obsession built and fueled by that night when I broke down. I don’t want anyone to EVER feel the way I did that night. 

I’m passionate about sharing my signature program, “12 Weeks to A Happier, Healthier You.” It is a program that will empower you to be stronger mentally, physically, and emotionally so you can take back control of your life. The program has a built-in community of women who are ready to cheer you on, and myself with participants every step of the way, providing personalized support and accountability. I’m on a mission to help other women who are truly ready to start living their best lives again. Find your purpose and meaning, and receive support to stop behavior that no longer serves you, like being controlled by fear. It is truly time to thrive.

Photo courtesy of author.