One Step At A Time…walking got me through this.
Obviously, having good insurance, being treated at a top rate hospital, benefiting from years of incredible research on a cure, and luck got me through this too. But walking was what I could do, and walking was what I did.
I was diagnosed with Acute Myeloid Leukemia on June 9, 2017 at the Allstate Wellness Center. I went in to treat a lingering sinus infection and was given a prescription. But my doctor wanted to see me again in a week because she had noticed the lymph nodes in my neck were swollen. I didn’t think much of it and considered skipping the follow-up because my sinuses were feeling better, but my wife made me keep the appointment. I am so grateful that I did. Two days after my follow-up appointment, my doctor called and told me to drop whatever I was doing and immediately go to the ER. I had too many blasts (immature white blood cells) in my blood draw. She said she thought I had leukemia. It’s hard to remember the details of the rest of that day. Leaving my meeting, grabbing my keys and calling my wife on the way to the hospital are fuzzy memories. But I do distinctly remember how I felt. Helpless, as if the floor suddenly gave way and I had nothing to hold on to.
The whirlwind that followed is a blur now. I was in the hospital for a month going through an induction chemo to get in remission. During chemo, the nurses at Loyola Medical Center had a mantra that I would hear on repeat: “Did you eat? Did you walk?” The nurses instructed me to eat, even if I didn’t feel like it, and to try and walk for twenty minutes three times a day. Eating was horrible, and despite my best efforts I couldn’t say I was very successful at it. But I found my stride with walking. My feelings of helplessness were slowly replaced by empowerment with each step. Finally, there was something I had control over.
I walked like my life depended on it, because it did. The survival rate of my cancer was less than 30%. A lot of things can kill you when your immune system is broken, but pneumonia is at the top of the list. At the time, nurses and oncologists were noticing that patients that walked generally fared better than patients that didn’t, believing that being upright and active helped the lungs stay clear. In fact, the outcomes were so much better for active patients that I was chosen to participate in a study where patients were issued a Fit Bit during treatment to study if increasing your steps correlated to an increased survival rate.
It was also made clear that with the type of Leukemia I had chemo alone would not work long-term. A bone marrow transplant (BMT) would be necessary since I needed a new immune system to wipe out and replace my existing, cancerous immune system. Without it, it was almost a certainty that the cancer would come back.
After reaching remission, I was discharged from the hospital and the search for a BMT donor began. My daily walks and obsession with my step count continued. As mental hang ups go, this didn’t seem like the worst one. My wife and kids teased me a lot, and I spent too much money on shoes that month, but I needed to do something.
Two donors were identified and the best match was chosen. I returned to the hospital in August. BMT is a brutal process, where your body is flooded with so much chemo that it destroys your bone marrow. It’s a remarkable and devastating process. That spongy stuff INSIDE YOUR BONE is destroyed. And then, when everything is dead, the doctors introduce the new hope, the new and perfect bone marrow. Needless to say, it wrecked me. I still walked the hospital halls, but sometimes making it even just a few doors down and back felt all but impossible. I missed how my walks made me feel empowered, even during the worst of times, and I missed feeling connected to my support system of loved ones. I went on short-term disability offered through work during this time and had to limit visitors because my infection risk was so high. Even my kids were discouraged from visiting me. My wife stayed in the hospital with me, every day. I still get a little choked up about that one. I am a lucky man.
But at the time luck didn’t seem to be on my side. The first BMT failed to engraft and so they repeated the whole process with the second available donor. The second BMT had failed as well. (It’s important to note that this rarely happens once, and twice was unheard of. So if you are reading this and you are faced with the decision of having a BMT or not, please understand the odds. I was just incredibly unlucky.) Well, long story short, I was dying.
But I was still walking. I was down to two twenty minute walks per day, or even sometimes just one twenty minute walk on bad days. I had also just been diagnosed with sepsis and fungal pneumonia, but I kept moving.
My son was quickly evaluated as a “half match” or haploid donor and I went through my third round of bone marrow killing chemotherapy. My doctors were very clear about the dismal survival rates I was up against. It was a race against time. I would either engraft with my son’s immune system in time and be able to fight the infections in my body, or I would die of these infections. And because my son was not a perfect match, if I did survive, I would need to go through an additional round of chemo and immunosuppressants to keep his immune system from attacking me.
My son, it turns out, had donated some pretty fantastic cells, in record breaking numbers, and they engrafted immediately. I woke up to a parade of nurses on November 9th, 2017, clapping their hands at 5am in the morning, sharing the news! I had engrafted! I had working bone marrow again. I had been in the hospital for over 3 months. By this time, I had stopped walking. And when they discharged me with my new immune system on November 14th, leukemia free, I was in a wheelchair.
Recovery from three bone marrow transplants in a row was not easy. Hard work, eating, and, you guessed it, walking was now my mantra. I remember being in the hospital and a nurse telling me, “You are going to have bad days and good days, you just have to take it day by day, and sometimes, just go minute by minute.” For me that translated into a step by step approach, literally. I could not focus on next week when I would be taken off immunosuppressants and my son’s cells might attack me. I could not focus on the next 100 days when my leukemia was most likely to return. I could not focus on the residual pneumonia that was making it hard to breath.
But I could count my steps. And I could make it a goal to increase that step count every day. So that's what I did.
I am now two and a half years in remission and I will always be grateful to my doctors, nurses, and family who stood by my side, helping me through slow, labored, painful steps, to make sure that I kept moving forward.
It seems quite appropriate that the Light The Night event is a walk to raise money for The Leukemia & Lymphoma Society (LLS). And even more perfect that my journey that began at Allstate would end with the Allstate Light The Night team. This team, led by Guy Hill, has been organizing walks with Allstate employees for years. Many people in this group have even more compelling stories than mine, and many just want to do good. But all have been walking to raise money for LLS. I was so excited to participate in my first walk in 2020.
No matter the impacts of COVID, I am excited to join in my first Light The Night event this fall. And you can be sure I will continue to count my steps and increase my step every day until then. I wish you all good health in these crazy times and I hope with all my heart to be walking with you soon.
Let’s Light The Night!