I found purpose and meaning in my life after so much trauma. I feel like I am here to help other women. I wouldn't be living an incredible life that is better than what I could have ever imagined without cancer. I don't live in fear. I am present with people and found out who my people are.
I was diagnosed with acute lymphoblastic leukemia at 31 years old on Friday February 14th while sitting in the ER.
I had zero energy, nodes on neck, blood coming out my nose when I blew it, bruising everywhere. I was lightheaded, Petechiae, I looked like a ghost, and had eye issues and dizziness.
I actually think I blacked out when I thought I heard those words. Then I looked at my husband and asked, ``What does that paper say about cancer?”
Which was a google print out on leukemia.
I was immediately put into the hospital for the next 28 days.
My whole life as I knew it was over.
My treatment protocol was for almost 2 years, with an aggressive regimen of chemotherapy, which had me going back to 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, which I ended up having a seizures and stroke, which left me temporarily paralized on my left side.
So while chemo wasn’t hard enough I spent 2 weeks in a rehabilitation hospital.
Once I learned how to walk, talk and eat again and use my entire left side well enough to leave I went on to 8 weeks straight, 5 days a week, 3 hours every day of rehab to gain back as much function as I could, all while still going through chemo.
Oh -I wasn’t in remission yet.
Desperate for normalcy in my life. So beyond desperate, I went back to work way too soon.
Still not in remission yet.
But shortly after going back I did get into remission.
So as I was working, going through treatment and just trying to be normal as best I could through it all.
At the end of July the next year I was finally done with my treatment. I was relieved, to say the least.
But this was just the beginning. 7 weeks later I relapsed. My medical team put me back into the hospital.
I was told my body was no longer responding to chemotherapy so my options were a clinical trial or an immunotherapy.
I decided with my husband to try the immunotherapy first, since it was the least aggressive of the two. I was sent home with a fanny pack for a 24 hour 3 day infusion pump.
Well, I went right back to the hospital about 24 hours later with a cytokine release storm. Basically my body started to shut down. I spiked 105ish degree fevers for 3 days straight.
None of which I remember.
My fevers finally broke so onto the clinical CAR-T cell trial.
I had to get every test under the sun done to participate, which took months.
I spent my anniversary, birthday and thanksgiving in the hospital, waiting. Well it was all for nothing, the clinical trial was shut down.
Now my only other option at the time was another clinical trial that was full.
So I waited and they kept me alive with blood and platelets.
After 68 days I was finally allowed to go home, with my moon shot already in motion.
I went home with a letter of compassion written to the drug manufacturer and the FDA for an immunotherapy they thought may work but was for an entirely different cancer than mine.
Literally my Hail Mary moment.
So I went home and did what I think anyone else would do. I didn’t go on some fancy vacation. I didn’t have a “make a wish” situation. I went home cleaned out closets.
I went home and spent time with friends and family.
I spent that Christmas thinking it was my last. Soaking in all the moments. Trying to hold onto memories I may never use again….
Well, I ended up getting approved for the immunotherapy that saved my life, Inotuzumab. After 4 rounds I was officially back into remission.
So onto a stem cell transplant.
Back to the hospital I went 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 & donor.
The day of the transplant I was nervous, scared and just honestly preparing for the worst. I remember that day but it was also such a blur.
After another 32 day stay I was set to go home but still had to stay isolated for the next 3 months, because picking up any infection was life threatening at that point.
So my first time out was lunch with friends. I remember being so ready to go out there but nervous. I was only out about an hour but it completely exhausted me. I went right back home and napped.
I thought I was recovering very well but and that life would be back to normal.
That’s when they told me 6 months after my transplant that my cancer was in fact back, again.
That last one 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.
The choice was between another 4 rounds of immunotherapy or another stem cell injection. The thought of doing it all over again, just exhausted me.
My medical team decided to do the immunotherapy first to see what would happen.
Thankfully from that I am still in remission to this day.
Every time I see my oncologist, she just looks at me and puts her hand on my shoulder and says “Baby, I am just glad you are still here.” If it was that serious, no one let me know, that’s for sure. However, when she finally said I think 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.
I mean 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 just done with all of the treatment. I was beyond exhausted. But as my medical team said "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. I literally was just concentrating on not dying. I was honestly just scared, waiting to hear the words, for a fourth time, your cancer is back. I couldn’t imagine a life without it, let alone how to live it. I mean don’t get wrong. I was relieved to hear this but there weren’t celebrations after this one. There was no bell to ring, there were no balloons, or acknowledgement. I think no one wanted to really believe it was happening either.
So I did what I think so many of us do. I googled “cancer treatment ended, now what?” Expecting or at least hoping to find answers. But there really weren’t any. So I was left confused, angry and overwhelmed with what to do.
I was 34 turning 35 post menopausal, 30+ lbs overweight from the drugs and just tired.
There were no answers to how I felt. Or I should say how to stop feeling how I felt.
I wanted to look like a strong badass survivor but instead I was crippled with fear, anxious more than ever and completely unprepared for the intense waves of emotion 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, which is why one day coming home after work one day I had a nervous breakdown.
I fell on my knees on the kitchen floor in front my husband, ugly crying because I just wasn’t me but had no clue who this new person was either.
My husband didn’t know what to do after I grabbed all the pain killers 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 get out from it. All while the whole time I was so strong through treatment.
But was completely failing at life.
As I cried into my couch pillow face down that night in front of my dad and my mother in law, the only thought that went through my head was “this is so embarrassing”.
I kept asking why I couldn’t get my sh*t together.
I couldn’t live this life.
That night face down in a pillow sobbing, something just clicked in my head and said, "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 going back to my old life was what I was supposed to be doing. But, it was just making it worse.
So 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. Figure out how to rid the fear, anxiety, anger, overwhelm, weight gain and get my life back. I had to regain the control I lost. I had to find more purpose and meaning in all of this.
So I dove deep and started researching, talking to experts, reading every self help book I could, went on a healing retreat I couldn’t afford, double downed on therapy and keep searching. I was on a new mission, which still to this day fuels my fire. I wake up everyday and say to myself: "how am I going to help someone where I used to be?"
The guilt I feel now isn’t over working or surviving but who I am NOT able to help and reach. Yes, it’s my obsession.
Built and fueled by that night I broke down. I don’t want anyone to EVER feel that way I did that night. It’s why I am so passionate about sharing my signature program with all of you: 12 Weeks to A Happier, Healthier You… it is literally a step-by-step program so you can start thriving after treatment instead of surviving each day.
It is a program that will empower you to be stronger mentally, physically and emotionally so you can take back control in your life. It has a built in community of women that are ready to cheer you on. I will be there with you every step of the way giving you personalized support and accountability.
I am on a mission to help women who are truly ready to start living their best lives again. If you are one of those women then it is time for you and I to chat, so book your start living again call here. This program will truly help you thrive, so you can stop all the Googling, wasting time and energy on what doesn’t work and focus on what does. A way to find your purpose and meaning through it all and stop behavior that no longer serves you, like being controlled by fear.
So let’s go my friends, it is truly time to thrive.
Together we are Stronger!
Resource Links from Casey:
Thriving After Cancer Facebook Group
A Happier Healthier You 13-week survivorship program
Book: Finding Your Way Back to Heart Center Cancer treatment is over, now what?
Website: The Happier Hustle
Cancer made me reprioritise myself, gave me the time to be present and see the beauty that was around me. Cancer has shown me that I needed to heal more than my physical body.
My perspective changed in the most wonderful way. Cancer is the best worst thing to happen to me.