February 11.
6210 days.
17 years.
3 different treatments totaling 1335 days and still counting.
I recently saw a question online…
What would you tell your past self when you were first diagnosed with blood cancer?
I scrolled right on past, because I truly didn’t (and don’t) know how to answer it. So many inside and outside of the club I never asked to be a part of only want the bright, shiny, happy stories. Hope perseveres, right?! Or so they say.
For years, I shared about my journey and could have probably rattled off a million answers to that question. I was motivated. And determined. And resilient. But damn, now I’m tired and angry. Tired of being in fight or flight mode. Tired of not even being able to earn the “P”. All I get is Traumatic Stress Disorder. And angry about still having to make space for cancer in my life.
After I was diagnosed in 2008 (officially) I can remember a coworker telling me I was going to do great things despite of and with cancer. While I know her intention was absolutely never to put pressure on me, my type-A perfectionist personality took that as requisite to life with cancer. Go big or go home, right? I got my act together, lost 100 pounds, and started running. I got as healthy as I could. Despite.
In 2014, 2 weeks after finishing my 6th and final round of chemotherapy, I started running again. A year later I ran my first road half marathon. By 2017 I had gotten all the chemo weight off and was feeling strong and healthy. I started getting featured here and there in different places online for my story. Despite and with.
In June 2017 the cancer was officially back, but I still felt good. Because I had fallen in love with running trails, in May 2018 I ran my first 50K and in December 2018 I ran my first road marathon. In March 2019 it was time to start treatment again and because I still had this self-imposed obligation to “go big or go home” and keep up “appearances”, I kept going even through the multitude of side effects and ER visits. I was on the cover of a magazine with a 2 page spread to tell my story and in November 2019 I ran my first 50 miler. In February 2020, I finished my first 100K. I came out of that race with a tibial stress fracture but if I was the “badass” that wouldn’t let cancer hold her back, I couldn’t let that either. So, since I couldn’t run, I took up road cycling. By August 2020 I rode 100 miles through the North Dakota plains. I was also featured in another publication and on a podcast that year. Despite and with.
Late 2020, we had an abundance of life changes which in a way forced me to finally let my body rest. In March 2021 after 730 days of treatment, I took the final pill for that regimen. I spent the next year enjoying foods I couldn’t tolerate during treatment, soaking up all Vegas had to offer, and traveling. Then boom, that ugly “c” word said not so fast. May 2022 brought my third recurrence. The funny thing is, having a chronic, incurable form of cancer, you should expect the shoe to drop at any moment. But I didn’t expect it so soon. I got very comfortable with the hope (oh look, that “h” word) that remission would last a while longer. Even though my body made it very clearly known that it hated every single day of the last treatment, the cancer waved the white flag early on. My doctors believed that gave me a higher chance at deeper and longer remission.
But in true Lacey “go big or go home” fashion, I decided I needed to start training again. I pulled out my bike and laced up my running shoes. It was agonizingly slow going. Even though theoretically I have had a compromised immune system from the beginning of this journey and my body did an amazing job keeping me well other than a minor cold here and there and pneumonia once, it decided no more. I got covid. Then later that year, I got sick for 7 weeks straight. But hey, they started me on monthly IVIG infusions (I call it my superjuice), I signed up for a half marathon and made it up to 8 mile training runs.
Fast forward to fall 2023. My white blood cell counts are rapidly increasing, night sweats are a daily occurrence, and my fatigue levels are becoming detrimental to life. Time to start treatment. Again. I have taken 2 pills daily for 428 days now and will until either the drug decides to stop working or tries to kill me. It’s like a bad game of Russian roulette.
This third recurrence/treatment has been hard. So much harder than the previous 2 and I can’t pinpoint why. It is because I am mentally struggling with not being “ready” to fight again? Is it because my body is older and just doesn’t recover as well? Is it the cumulative effects of treatments damaging the bad AND good cells?
When I started this treatment in December 2023, I took a few weeks off of training runs to let my body adjust to the meds without me exacerbating the situation. When I tried to pick back up, it was immediate failure. So, I started over from scratch. I have tried starting over no less than 4 times in the last year. I am a certified running coach for goodness sake and I can’t create a slow enough training plan for my body to adapt to. Imposter syndrome is running rampant. I mean, I ran a 100K during my last treatment and I can’t make it to 2 miles now. I couldn’t even bring myself to put my me wall (all my medals and race pictures) up in my office in the new house. They are relegated to the garage and still I’m tempted to take them down and box them up. How do I “go big or go home” now when so much of my story (despite of and with cancer) is wrapped up in “miles”?
Perhaps though, I’m not actually angry. Maybe I am just mourning the loss of my coping mechanism. Fresh air. The rhythmic pattern of steps on pavement. The dance on the trails, constantly navigating obstacles. They were far better therapists than any human.
I guess I do have an answer to the question.
What would you tell your past self when you were first diagnosed with blood cancer?
Buckle up, bitch. The journey will be rocky, so get into therapy ASAP. The five stages of grief are not linear and will wax and wane with time. Don’t take advice from the happy, shiny people. Seek out the real people. Find distractions for the hard times, but don’t get lost in them.
And remember….still, you will rise.
