Last year, professional fighter Coel Peach opened up to Health Stories Project about life with acute myeloid leukemia (AML). He explained how he first found out he was sick and why he documented so much of his journey on social media, especially Instagram. We were struck by his candor and willingness to share during such a difficult time.
Though one of the most common types of leukemia, acute myeloid leukemia (AML) is still fairly rare, accounting for just 1% of all cancers. Fewer than 200,000 cases are diagnosed in the U.S. every year. AML affects mostly older adults, but can happen to younger folks too. It progresses quickly if untreated, sometimes spreading to other parts of the body. The five-year-survival rate for those over 20 years old is 24 percent, but the disease can be treated and even cured.
The truth is, cancer is different for everyone, and rare cancers like AML can be even harder to cope with, as patients often must seek out testing, specialists, and undergo intense treatments.
One thing Coel told us when we interviewed him is that he felt “like a caged animal.” AML treatment compromised his immune system which meant Coel had to limit activities and even visitors that brought him joy. Knowing this isolation happened to others, Coel wanted to connect with and support people who were also struggling with acute myeloid leukemia via social media.
Recently, we learned of Coel’s passing and this news hit the Health Stories Project team hard. We wanted to honor Coel by continuing his mission and boosting the experiences of people living with AML.
Here’s what some from our community had to say:
The greatest challenge when it comes to life with Acute Myeloid Leukemia is…
“Coming to terms with immediate mortality without being entirely incapacitated by despair.” — Shaun
“Losing my job. Not having kids. All of my family except my husband in another country. My legs atrophy really bad and I had a hard time walking in the beginning.” — Anonymous
“That it was so advanced with so few solid symptoms.” — Tom
“The effects on daily life and the way it affects family. Being on lockdown unable to do things.” — Anonymous
Where to Find Support
“Besides the obvious high standard of technical medical care, unfortunately the best support came from myself, from finding outlets for leveraging grief into something positive. I wish such emotional support had been readily available. I am working to change that.” — Shaun
“My faith in God and the support of my family, in addition to that provided by the hospital.” — Tom
“My husband never left my side and my nurses were always smiling and super friendly and honest.” — Anonymous
Advice for others with Acute Myeloid Leukemia
“For me it was the healing beauty of spending time being physical outdoors. Surround yourself with positivity, beauty, truth, and love — including everything you hear, see, taste, smell; Everything you feed your body and mind. Make your life the most beautiful creation possible given the current limitations. Focus every bit of energy on quality and let go of concerns regarding longevity. That will take care of itself.” — Shaun
“Find a specialist and get treated directly from them even if this means traveling. Go on Facebook and look for your disease. It was very comforting to connect with other people even though they might be on the other side of the Earth. I joined several local cancer groups prior to going to Facebook and finding like-minded friends who either have the disease or are caretakers. Prior to that I thought I was alone and it was very disconcerting.” — Paul
“Do everything your doctor and the staff tell you to do times two.” — Tom
“Keep a good attitude — that’s half the battle!” — Anonymous
What impressed us when we spoke with Coel is that he often countered his anger and frustration with positivity every time he mentioned negative feelings.
“Some days you get defeated, right? When I don’t feel the best, sometimes I just try to smile. I find that if I put a smile on my face, my spirits will come up and everything will turn around.” – Coel Peach
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