Multiple Myeloma Survivor
Strong-willed Survivor Shares his Story to Inspire Others
If he hadn’t lived it himself, Jim Bond never would have believed how multiple myeloma would change his life. Today, he and his wife, Kathleen, share their story of setbacks, struggles and joy with support groups around the world. They strongly believe every myeloma case is different and hope their experiences will encourage others facing the disease.
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. He discussed a few treatment options, and 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 oncologist’s 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.
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 much 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 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 rode the entire POHR.
In September 2012, a very low platelet level necessitated my 32nd bone marrow biopsy. I had developed treatment-related leukemia and 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 wrote The Man in the Arena: Surviving Multiple Myeloma since 1992. Along with simply putting down all the details so I would have a written record of everything we’d been through, I hoped it would help others by encouraging them to never give up. Also, 100 percent of the profits go to charities that support multiple myeloma patients.
To promote the book, Kathleen and I have talked to dozens of patient support groups and organizations from all over the globe. We always make it clear that everyone’s experience is different, but we share our story so they can hear how someone else with the same diagnosis has been able to live a long, full life. They hear how I benefited from a second opinion and clinical trials, for example, and learn that they can make their own decisions.
We use humor quite a bit. One of our favorite stories to share is the 8 p.m. rule, and it can really apply to any situation – cancer-related or not. After 8 p.m., no cancer or medical talk is allowed in our house so we can give ourselves a chance to relax, enjoy the evening and get a good night’s sleep. It used to be a 9 p.m. rule, but we’re a little older now. Kathleen swears that if it ever gets to be a 7 p.m. rule, we won’t tell anyone!
It’s difficult to know you have an incurable disease, but you can learn to manage your way through it. I hope we are proof that there are still a lot of memories to be made. We recently celebrated our 50th wedding anniversary, and it’s wonderful to celebrate those happy occasions.
The book is available on Amazon, and I’m always willing to be a source of emotional support to anyone with multiple myeloma (jim.bond48@gmail.com).
