I was diagnosed with acute myeloid leukemia (AML) in December 2019. After three days of chemo, which was discontinued due to bleeding in my lungs, I spent three weeks in the hospital finding out I had a life-threatening, invasive fungal sinusitis that they could not treat with medications or surgery. The doctors sent me home to hospice. They had shot me up with white blood count (WBC) stimulators to give me as much time as they could. I wanted to get through Christmas and my youngest's birthday which was on the 29th. They gave me three days to four weeks at most. I was sent home on an antifungal drug, and that's it.
I had lost sight in my left eye due to the sinusitis, and while at home, I lost the use of my right arm and leg. Clearly, it was caused by a stroke in hindsight, but at the time, I’m not sure if it was clear to us or the doctors whether it was the fungus attacking my central nervous system and my brain. Needless to say, this was a difficult time for my family. However, in a bizarre turn of events, I kept living, and my ability to use my right arm and walk had returned. We met with the doctors again after getting a new MRI, but the message was that my condition looked worse than when I was in the hospital. They gave me a "Hey, keep doing what you are doing."
Months had passed, and we were fully in the throes of COVID. The kids were home, which was nice. I wanted to go fishing one last time in Florida, and my wife contacted the hospice doctor to look at bloodwork to see if we should/could risk it. The bloodwork looked like remission numbers. This was five months after the initial blast of three days of chemo. Unbeknownst to us, my hospice doctor talked to my original oncologist, who upon finding out I was still around, reached out to us. The hospital had entered into a partnership with MD Anderson in Houston, and he wanted to get me in and send my case to them. Of course, we were on board.
My wife and I flew down to Houston and met with one of the leading leukemia doctors in the world. They agreed to take my case and admitted me right there and then on July 10, 2020. I spent the next three months in Houston, two in-patient and one at a condo close to the hospital. After that, I was sent back home to continue the protocol for two years with chemo every month for five days.
After two years of treatment and back and forth to MDA for tests, we went back to Houston in September 2022 for follow-up post-treatment, and the bloodwork was not great. My doctor was pretty sure the AML would be back.
We spent the fall getting things in order as my only real option then was a stem cell transplant (SCT) which before I was not a candidate for due to the fungal infection. We checked on local options for the SCT and had a trip to Houston planned also to speak to the SCT doctors there, but the flight got canceled. When AML hits, it hits hard, particularly with my mutation. I did bloodwork in December, and it showed blasts at 8%, and the doctor advised me to get down to Houston as the local hospitals had already said they would not take on my case. Either way, in my mind, I was going back to Houston. We got on a plane that day, and I was walking into the ER at MDA that night by 9:00 p.m.
The SCT process took six months. We had to rent a house in Houston. My older son stayed the entire time, and my wife was back and forth with my younger son visiting here and there. My cousin babysat me while I was dealing with the worst of the SCT process.
Due to the intrathecal chemo, probably 10 in two months, and radiation, I had neuropathy and lost the ability to walk without significant assistance. The PT/OT staff at MDA is fantastic and was crucial in my getting back to walking. I was released to come home in June 2023. I have since been cancer-free (cross fingers), am working, running, lifting weights, took my sons to Scotland, and actually played soccer for the first time since October 2019.
My journey has had lots of twists and turns, pain and joy, and growth. What I know now is that life involves suffering. It can't be avoided. However, the trick is to seek a certain calm resolve in facing the difficulties that life brings. Easier said than done, and I can't say that I didn't have some very dark times in the journey. I was lucky in that I had a very supportive family who did a lot of the fighting to keep me around.
John William
acute myeloid leukemia (AML)
