My name is Aaron Jones. I was diagnosed with multiple myeloma when I was 48, almost 49, in May of 2009. I was a pretty active guy. I was a realtor and played in a rock band. When I started having this burning pain in my lower back, I thought nothing of it. I was in fairly good shape, so I ignored it.
By September, the pain got worse and worse. And the pain did not subside. It just got worse and worse. I went to the MD, and he prescribed me Vicodin. I took that. I still had flexibility and was mobile.
But the thing is, the pain was constant.
When I went back to my doctor, he said before he could give more Vicodin, I’d have to agree to do a CAT scan. And that’s when they detected the lesions on my vertebrae—on like three vertebrae or something. I was already in active myeloma, and that was in October 2009.
When I was diagnosed, I had never heard of multiple myeloma. I always thought cancers were something that other people had to deal with. Not me. I was healthy.
Once I was diagnosed, I didn’t see it as a mortal would. It made me sad. It made me angry. It got in the way of everything. But I had to handle it. My kids were young at the time. We explained it to them the best we could, but we also shielded them from the details—in a way. Soft-pedaled it, in a way. We got them to help out around the house more: walk the dogs, do the dishes, that sort of thing.
I wanted to share my story this Myeloma ACTION Month to provide hope to others and understanding.
For those who haven’t heard of the disease, I want them to know, it’s not contagious. You can still hug a person with myeloma. Just give a person support if they are facing this disease.
I reached out to the International Myeloma Foundation to give some insight into my thoughts. For example, there’s a book I’ve read called Witness written by Whitaker Chambers. He was a member of the Communist Party in the 1930s and 1940s. And the reason he joined the Communist Party was because he felt at the time that they gave him something to live for and something to die for. Other than the premise of the book, that’s something that stood out for me: You have something to live for and something you’re willing to give it all up for. Whether it be that first cup of coffee, your favorite song, your kids, the dog, something…
I want others with myeloma to know that I’m here. I’m alive. I rake the leaves. I walk the dog. I go to the gym. I eat chocolate (maybe too much at times). I play music. I also like to keep in mind the greater good.
When I go for walks on a nature trail near me in Texas, for example, I hate seeing all the plastic and garbage. I just pick up garbage for a couple hours, and I can usually remove about a ton of trash. We all are part of something bigger than just us…is what I guess I’m trying to say.
My myeloma story in one word is attitude. I chose this word because when I was diagnosed, I went to the local hospital. They gave me Fentanyl for the pain. This patch. And remember this is 2009, so I’m swooning from the patch on all kinds of things. So, my wife and I peeled it off, cut it in half, put it back on, and it’s still after a couple of days, too much and cut it to a quarter and it’s still too much. And I start drying out. I couldn’t hold food down. I got re-admitted, constantly re-admitted, and then out again.
And it seemed that the hospital at the time, didn’t want to do anything about it. So, my wife, God bless her with guidance from God knows where, but she was driven. We ended up in contact with a doctor at the University of Michigan. He got me stabilized. They peeled the Fentanyl patch away and left me with no pain medication or anything for days.
I slowly recovered. It was with the help of the doctors there and my wife. I was able to qualify for a Kyprolis (carfilzomib) clinical trial. But it was when I was going through the worst of this, and my wife was just there. That was really powerful. Because I had something to live for… and that’s what I mean about attitude. You realize what is important to you and who is important to you, and you live for that each day with myeloma.