In 1992, I was 43 and happily married with two college-aged sons. Aside from a sore back, I felt healthy. However, results from a mandatory physical at work showed a slight increase in the protein in my urine. I followed up with blood work, X-rays and a bone marrow biopsy (spoiler alert — this was the first of 38 bone marrow biopsies), after which my doctor told me I had multiple myeloma. Even worse, it was Stage III.
My sore ribs weren’t just sore, they were broken. I also had bone damage in my spine and lesions on my skull. I asked him how long I had to live. He said if I did nothing, a few months. If I did all I could, two to three years. My wife, Kathleen, and I were numb.
We’d never even heard of multiple myeloma. I asked him what he would do if he was in my shoes. He told us about an oncologist at a competing hospital who had more experience with multiple myeloma than he did. He believed I’d have a better shot with him, and he’d help me get in with him. I learned then just how compassionate oncologists can be.
We met with the oncologist the next day. There were few drug options, but we liked him, so we mapped out a plan. When we got home, we wrote a single paragraph that included who I was, where I lived, my diagnosis and the plan. We ended it with, “Do you agree?” We faxed that paragraph to the myeloma oncologists who were publishing articles at the time, and we heard back from everyone. They all agreed that the plan and the hospital were good.
That gave us confidence. I started with chemotherapy and an autologous stem cell transplant. I went into remission for five years. I knew the multiple myeloma would come back (because it always does), so when it did, I asked my doctor if I could have another autologous transplant. He hesitated because I’d had full body radiation but finally agreed. That bought me a couple of years.
Toward the end of 2001, I needed more treatment. My older sister was a bone marrow match for me, so although my myeloma levels were high, I had my first allogeneic transplant. The disease came back. We were disappointed but not surprised.
In early 2002, things became serious. I couldn’t eat, I ran high fevers, and my kidneys were shutting down. My doctor said I needed hospice. We’d heard about a clinical trial at another hospital, but he said there were no openings. “You’re wasting your time,” he said.
Another doctor gave me a list of hospitals to try. I left messages with all of them. My phone rang, and it was a doctor associated with the trial. He asked how soon I could get there and if I was willing to relocate for nine months. The fact that he thought I could live that long was incredible. I packed enough for nine months and noticed Kathleen packed for what looked like a weekend. I had a 104 degree fever and was a little foggy, so I didn’t think more about it. When my sister dropped us at the airport, she was very emotional. Again, I didn’t dwell on it.
Our first night there, Kathleen called the ER doctor because she didn’t think I’d make it through the night. He said, “Your husband is the seventh person in our trial. That makes his trial number 007. I think that’s good karma for your husband, Mrs. Bond.” And it was.
Within two weeks, 99 percent of my monoclonal protein had gone away. A few months later, I was in complete remission. It was like a miracle. It dawned on me that Kathleen only packed for a few days because she didn’t think I’d make it longer than that, and when my sister said goodbye at the airport, she was saying goodbye forever.
About three months later, Kathleen decided to develop a cycling fundraising event. I told her it was a great idea with just one problem. We didn’t cycle. To her, that was a minor detail.
After devoting two years to it, she launched the first annual Pan Ohio Hope Ride (POHR.org), a 328-mile bike ride over four days that benefits the ACS Hope Lodge, which provides free lodging for cancer patients and their families while they are undergoing treatment. I bought a bike and trained, and I ride the entire POHR each year.
In September 2012, a very low platelet level necessitated my 32nd bone marrow biopsy. I had treatment-related leukemia. I needed an allogeneic stem cell transplant. We couldn’t use my sister’s stem cells again because my body identified them as mine already. We found a match, but the transplant board had to approve it. I was 64, and with my history, they voted no until they learned I’d just finished the POHR two months earlier. They took a chance on my physical and mental strength. I had the transplant that October and was declared in remission in December.
I’ve lost three inches of height, my spine is curved, I’ve had shingles, my thyroid blew out, and graft versus host settled in my eyes and damaged my vision. Even so, people tell me I’m lucky. I think we do what we can to give luck a chance to happen. Kathleen has been by my side every step of the way, and we take a very active role in our situation. We explored and took advantage of clinical trials – six, to be exact – and we partner with our medical team.
We get the most satisfaction out of helping others, which is why I’m always available as a source of emotional support to anyone with multiple myeloma.
Reprinted with permission from Patient Resource LLC. © 2017 Patient Resource LLC