Surviving Leukemia: Now My Brother Lives Inside of Me


Well, times were dark indeed
Feeling my body betrayed me

Life was good. My wife Bonnie and I were settling into a lifestyle that was becoming less demanding and more fun. Our only son was about to graduate college. My son and I were making music together and playing some local clubs and bars. I was physically active and worked out regularly.

I had recently made changes to my diet due to a history of slightly high cholesterol and was curious to see what effect (if any) it would have. A routine blood test told me that my cholesterol was well within normal range, but my red, white and platelet counts were all low. I was convinced the lab had somehow screwed up the test. I felt fine. After a repeat test, same result. I was referred to a hematologist. When I called they answered something like "Cancer Center." Uh Oh. Not good.

The hematologist confirmed my low blood counts, and wanted to do a bone marrow biopsy. He got an approval from my insurance company in about 10 minutes. This was really serious.

The road ahead was bleak
The plan was kind of hazy

Two days later, I was told that I had acute myeloid leukemia (AML). My world had changed. I went home and googled it. Five-year survival rates were awful. That's when I realized how serious this fight would be.

My neighbor, a breast cancer survivor, gave me a loose leaf binder, so I could keep track of my journey (a very thoughtful gift from someone with relevant experience). I titled the binder "Roy Montana Kicks Leukemia's Ass Book." I don't know why, but even though I had seen the survival rates for AML, I still believed that I would beat it.

After meeting with my oncologists, it quickly became clear that there was no one standard plan to make me well. Everyone's journey is different. Things would become clearer in about a month, after genetic markers in my bone marrow could be analyzed to determine what was causing the AML.

Direction was soon supplied
By markers in the marrow
Mine would have to die
And yours I'd need to borrow

I spent a month sleeping, throwing up, falling down, getting infections and having fevers in the hospital during induction therapy (where they poison cancer cells by poisoning you). The cancer cells liked it even less than I did and I was in remission. I was a survivor. I suffered nerve damage in my right shoulder and on the thumbs and fingers of both hands. I couldn't play the guitar anymore. Still, I was happy to be alive and I was about to get out of the hospital and get back to the real world. Just before getting out, my oncologist gave me the results from the bone marrow tests: I needed a bone marrow transplant and would be out of work for at least a year. Pretty depressing.

My two sisters and my brother volunteered to be bone marrow donors. My brother was a perfect match. The plan was to kill my bone marrow, so they could replace it with my brother's.

So vulnerable and weak
A dark and lonely place
You gave the vital piece
With selfless fortitude and grace

So, another month in the hospital while they poisoned me again (more chemo). At this time, I had no immune system, and was very susceptible to infection. I felt incredibly tired and weak. I have never felt more vulnerable in my entire life. My brother took shots to put his stem cell production into overdrive and flew in to donate his stem cells (that would save my life) like it was no big deal.

I couldn't eat the hospital food and couldn't go home unless I could maintain my weight. I was very depressed and thought I might never get out. When I did get out, the worry of infection continued. I wasn't allowed out of the house without wearing a mask and gloves.

During this time my wife and son had so much to do. I don't know how they made it through this period of time. I only had to focus on getting well. They had to take care of me, and still attend to all their other responsibilities.

With wife Bonnie between induction and transplant

I gradually began to feel better. Eventually, the nerve damage diminished somewhat and I was able to play the guitar again. Life was becoming more normal.

My Donor, you see
Lives inside of me
Giving my life another start
It feels kind of strange
That his blood is in my veins
But it also means he's always in my heart

I thought to myself, how do you thank someone for giving you more time on this planet? What could I possibly do to thank my brother? I eventually hit on the idea that I could do something special by writing a song to thank him. So I did. The lyrics are the lines between the paragraphs. You can listen to it here.

My Brother, you see
Lives inside of me
Giving my life another start
It feels kind of strange
That his blood is in my veins
But it also means he's always in my heart

It's been about two years since my bone marrow transplant (October 2013). Every day I think about the life my brother has given me and how his blood is literally in my body.

Roy and his brother Matthew as children

After a bone marrow transplant there is a possibility that your new immune system will attack your body (graft vs. host disease). I had a very mild (thankfully) bout of that. This can recur, but recurrence is not very likely.

Until you've had cancer, you might think that some people get cured. Remission is the word they use, because there is always a chance of recurrence. While discussing this with my oncologists, my wife summed it up perfectly when she said "so, you know you beat cancer when you die from something else." They pretty much agreed. They also said that when it recurs, the patient usually knows before the doctors.

So, every time I get sick, every time I feel unusually tired, it's there in the back of my mind that leukemia might be back. I realize that I can't control whether it returns, but I try to do what I can to increase my chances of living. I am determined to die from something other than leukemia.

Montana is an engineer living in Burlington County, N.J. with his social worker wife Bonnie. Both are active volunteers with The Leukemia & Lymphoma Society's First Connection program, which matches newly diagnosed patients and their families with trained volunteers who have had similar experiences.

Read other stories on survivorship.

Seventeen months after transplant

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