My multiple myeloma story has many chapters and continues to be written, and for that I am grateful. My personal experience also relates to issues that affect the entire multiple myeloma community: although patients like me benefit from a range of new and innovative therapies, more can be done to help us understand our options better, address the emotional burden of this disease, and find ways to reduce disparities in access to care.
Out of the Blue
Before my diagnosis in 2008, I was in the prime of my life. I had 3 wonderful young children, a successful career, and I was competing in Ironman races. Then one day after a race in Lake Placid, something didn’t feel quite right. That was the beginning of a journey that would change my life forever.
At the time I didn’t think much of it, chalking it up to exhaustion. But over the next few months, I continued to get sicker. At one point, I coughed so hard that I ended up with a spinal compression fracture.
However, because I was a strong endurance athlete, I continued to make excuses about why I was feeling sick. But just before I was about to enter another race, I had a conversation with my doctor. He drew blood to see whether my white blood cell count was elevated.
The lab results showed that my blood was so gummed up with protein that it didn’t separate as it was supposed to, and the other blood values were all over the charts. My doctor said that he thought I had multiple myeloma. I had never even heard of multiple myeloma before, and I didn’t even know it was a type of cancer.
A hematologist diagnosed me with stage III (or advanced) multiple myeloma. Getting diagnosed with an advanced-stage cancer was shocking. I didn’t know what to think or what was going to happen. Having to tell my family was very difficult. Explaining a cancer diagnosis to children is not easy.
I told them that I was going to fight through this, so I could watch out for them, and be with them as they grew up. I promised my 2 girls that I would walk them down the aisle someday.
What I didn’t know at the time was that the doctor had told my wife that this was the worst case of multiple myeloma he’d seen in his 40-year career. By the time I ended up at the hematologist’s office, my blood was so gummed up with protein, that it could not even be spun down.
I was losing kidney function by the hour, my hemoglobin and hematocrit levels were at less than 10% of normal levels, and my bones were so damaged that my hip crumbled like a cookie during a bone marrow biopsy. I was given a less than 5% chance to make it out of the hospital.
Treatment’s Ups and Downs
My treatment journey was full of ups and downs, of controlling the disease, and then having another relapse. Although multiple myeloma affects patients in different ways, we all face challenges.
There’s the mental side of coming to terms with a disease that is working against you every step of the way. Then there’s the emotional side from the roller coaster of treatment, remission, and another relapse.
And of course, there’s the physical aspect, which was especially hard for me, having been very athletic and in tune with my body, which came to a sudden halt.
While dealing with this emotional turmoil, I also spent time on understanding this type of blood cancer. I asked if I could pass this on to my children, and was told that the answer was no.
My hematologist explained how multiple myeloma was affecting my body, as well as my treatment options. That first weekend after my diagnosis I had several scans, tests, and blood work to figure out how to get the cancer under control.
It’s been more than 14 years since my initial diagnosis. Although multiple myeloma is not curable, it can be treated. I have gone through different treatments, which is fairly common for this type of cancer. I received a stem-cell transplant and participated in a clinical trial for a novel drug that represented a new drug class for multiple myeloma.
These therapies have allowed me to be present at family events I had only hoped were possible. I have beaten this disease 5 times in the past 14 years, and have been in and out of remission during those years. I have now been in remission for more than 5 years, and I do not receive any maintenance therapy.
Living with Multiple Myeloma
I’m proud to say that I have learned how to live with my new normal, and today I am in a much better place—physically and emotionally. My youngest daughter was 5 when I was first diagnosed; this year she will be finishing her second year of college at my alma mater. I’ve also seen my son graduate college, get his MBA, and start his career. My oldest daughter has become a beautiful and successful woman in real estate.
Thanks to the help of my doctors, my family, and many people in my life, I can look forward to so many more years with them, as we enter the next chapters of our lives.
New Approaches Still Needed
I’m living proof that many patients with multiple myeloma today are living longer, more meaningful lives than ever before, but there is still so much work to be done to improve the treatment.
At each step of my journey, I’ve found it overwhelming to understand and evaluate my different treatment options. Being diagnosed with cancer drives home how precious time is, so you don’t want to waste time exploring a treatment option that is not right for you.
I also had difficulties finding the right care. Sorting through the types of specialists I needed to see was confusing.
This burden became a double whammy: I was sick, but also sick and tired of the dead ends and barriers that blocked my way forward. And for some patients with multiple myeloma, just getting the right care can be a challenge.
I was fortunate to live close enough to a top cancer center in Boston, where I had access to treatments and participated in several clinical trials. Still, I had to drive hours back and forth for my appointments, and not every patient has the opportunity or the flexibility to do that.
Over the course of my disease, I’ve tried several treatments, including a stem-cell transplant, and have also participated in a clinical trial for a novel therapy for multiple myeloma. I had different side effects that made me wonder if it was all worth it.
At times my journey became disorienting, as well as disappointing. However, I still consider myself one of the lucky ones. But not everyone is as lucky, and that needs to change.
Although my story (and every patient’s story) is unique in some ways, many of my challenges are common. It is immensely fulfilling when I can help other patients understand that they’re not alone. I do this by affirming their struggles and sharing my own experience, by helping them to understand their diagnosis and the need to get the right care at the right time, as well as dealing with the emotional roller coaster that comes with cancer, all to underscore that they are not alone. I want them to know that hope and helpful information is available to them.
Target the Future: A New Program
That’s why I’m excited about a new program initiated by GlaxoSmithKline called Target the Future. This program is highlighting some of the challenges faced by people with multiple myeloma, so it established a Think Tank Challenge that awards $100,000 each year to whoever submits the most innovative idea that will address patients’ unmet needs, such as helping patients understand their treatment options better, reducing the emotional burden of the disease, or finding ways to address disparities in multiple myeloma care. By advancing new therapies and accelerating new ideas, we can help create a better future for patients.
I know firsthand you don’t have to be a scientist to make a difference, you just have to be inspired! I invite anyone to consider submitting an idea to the next Think Tank Challenge (for more information, visit www.TargetTheFutureMM.com).