Stronger together – how support helped me through acute myeloid leukemia
Sep 16, 2016
I will never forget what happened on July 17th, 2013. What started as a routine check-up quickly changed when my doctor called me back that very afternoon: “You have a low white blood cell count,” he said. When I asked what that meant, he told me it could either be a vitamin deficiency…or leukemia. I said to my wife, “that seems like a pretty big difference!” but we remained optimistic. My doctor told me to head to the hospital immediately for further tests. He emphasized that I had to go first thing the next day.
I was diagnosed with acute myeloid leukemia (AML) less than 24 hours later. I had never heard of AML and felt there was a darkness to it, with some uncertainty about the disease. My doctor told me it was a cancer of the blood and bone marrow, which prevents white blood cells from maturing correctly.1 She said it is complicated to treat, and they had to be very careful about tailoring a treatment for me. They conducted more tests. They explained that because the disease moves so rapidly, I had to be admitted to the hospital the very next morning.
I had no time to absorb what was happening. The hospital gave us some written materials which my wife and I read carefully, trying to learn as much as possible. My wife also conducted her own research while I was in the hospital. She asked a lot of questions whenever we met with my doctors. We learned that AML is the most common form of leukemia in adults and that the main treatment today is high-intensity chemotherapy, which meant that I had a long road ahead of me.1,2
Much of my time those first few months was spent in the hospital. It was there that I learned the importance of talking to other patients. Luckily I was in a leukemia ward so I had a lot of AML patients to talk to, and many of them were further along in their treatment. We’d get together in the lunch room when we were feeling ok, and would talk about what we’d do when we got better.
The next two years brought a lot of ups and downs. After finally getting through my first course of chemo, I was declared “cancer free.” But less than one year later, just as my wife told me she had “the old Arne back,” my cancer returned. We decided with the doctor to pursue a stem cell transplant, a procedure that replaces unhealthy blood-forming cells with healthy cells.3 It was the worst four months of all and I am still recovering. But it was worth it, because today I am “cancer-free” once more.
It’s amazing to me when I meet people who don’t want to talk about their AML. Sharing my story allowed me to find a Facebook group and a local support organization, LYLE, which was crucial to my emotional recovery. While my family and friends gave me strength through my treatment, there is nothing quite like speaking with someone who’s gone through it themselves.
So my message this Blood Cancer Awareness Month is: Find others with leukemia and lean on each other for support. My friends in the AML community were among my biggest inspirations, and today I am proud to say that I am returning to work part time and establishing my “new normal.”
We at Novartis are honored to be working with Arne to share his story during Blood Cancer Awareness Month. We hope that you will view his video, as well as other video content from members of your AML community here and here, and follow along with our AML-themed posts on Twitter all month.