In 2013, I was a 22-year-old senior at the University of Maine Business School and an active runner. Most seniors my age were finishing college, starting their careers, and planning their future. I never anticipated that my path would be different, but I was soon confronted with a diagnosis that would change my life forever.
It Started with Persistent Hip Pain
My journey with multiple myeloma started when I was studying abroad in Spain in the spring of 2013 and training for the Rock ‘n’ Roll Madrid Marathon. I came back home to Portsmouth, NH, in May 2013, with persistent hip pain that soon became crippling—any weight-bearing activities were difficult. I finally had an x-ray, which revealed that I had a suspicious lesion on the femoral head of my hip.
The doctor referred me to Brigham and Women’s Hospital in Boston, MA, where a biopsy showed a clementine size plasmacytoma on my hip. I had never heard this term before my doctor told me about it. A single plasmacytoma indicates a tumor, usually in bone or soft tissue, such as the hip. When there are several, it indicates multiple myeloma.
It was one of those moments you see in movies—time stood still. I could hear what the doctor was saying, but I couldn’t retain anything. It was this deafening roar of noise: my whole body went into an intense survival mode. The doctor told me that plasmacytoma can be successfully treated with radiation.
But hearing that a multiple myeloma diagnosis was possible after plasmacytoma increased my fear and uncertainty. In July, after a few additional biopsies, my team of doctors at the Dana-Farber Cancer Institute in Boston found a much smaller plasmacytoma on my skull, which then indicated I had multiple myeloma.
The majority of people are diagnosed with multiple myeloma at age 60 or older; only few are diagnosed at age 22, according to the statistics online. I felt incredibly isolated and disconnected from everything in the past, without any idea of what lay ahead. Knowing that I was one of the youngest people diagnosed with multiple myeloma was very daunting.
Radiation and Chemotherapy
I started treatment in August 2013. After a 10-day course of intensive radiation for the plasmacytoma on my hip, I had hip surgery, where my orthopedic surgeon put in a dynamic hip screw to stabilize the hip from breaking. I then returned to the University of Maine for a modified course load, while starting a chemotherapy regimen for multiple myeloma that included Velcade (bortezomib), Revlimid (lenalidomide), and Decadron (dexamethasone) and continued from October 2013 to May 2014. Going back to school was the best decision I made then. I was very grateful that my doctors thought I could handle it, so that I could have some semblance of normalcy.
After finishing chemotherapy, I was going to have stem-cell transplantation, meaning that my blood-forming stem cells would be harvested and then put back into my body to replace the stem cells that were damaged by chemotherapy. I thought, “Okay, I’ve just handled and gracefully gotten through radiation, hip surgery, months of chemotherapy—I’ll be able to do this stem-cell transplant as well.” I was almost looking forward to this, thinking this was going to be the “grand finale”—the end of treatment.
My Altered Self-Image After a Transplant
On June 23, 2014, I had the transplant and remained in the hospital for 3.5 weeks. Being in that isolation room for a transplant was symbolic. I had no idea that a transplant was going to be the single hardest thing in my treatment; everyone thought I was finishing up chemotherapy and getting back on with my life, but the truth was far from it.
I caught pneumonia a week after being released from the hospital. It’s common for people to catch infections shortly after a transplant, because of a weakened immune system. I was back in the hospital for the next 5 days. Coming home after that bout of pneumonia was very difficult physically, mentally, and emotionally. My self-image was drastically altered. I had gained 60 pounds. I had lost all my hair. I just didn’t recognize myself, or anything around me.
I’d wake up in a black pit of despair, just wishing and hoping that things would get better, that the nausea would go away, that my hair would come back, that I could return to my previous self-image. I was bitter at what had just happened.
Dr. Schlossman, my oncologist at Dana-Farber, encouraged me to go for walks, which I didn’t appreciate at that time, but going on walks and smelling the fresh air helped me get my “sea legs” back, a term the doctors used to describe my getting back to normal.
I was still having lingering hip issues, and I finally had total hip replacement surgery in July 2016, which ended my treatment. I am currently in remission.
It’s Okay to Reach Out for Support
I give my mom all the credit for motivating me to get out of bed each day when I didn’t want to, and I couldn’t have asked for a better support system than I had with my family, friends, doctors, community, and the University of Maine and its professors; they are all incredible.
If you are going through a similar experience, know that even though you feel you’re part of an exclusive club that no one else is allowed into, many other people want to be there for you and to try and understand what you’re going through.
It’s okay to have fears about your future, to fear whether you’ll land back on your feet, or if you’ll be able to live a long and fulfilling life. Don’t try to hold in these emotions, because this can be a lot for one person to handle alone.
Reach out to anyone you can. There are people inside and outside of the cancer community who want to, and will, help. A strong support system will get you through your darkest moments. You may not always know and understand the feelings that arise while battling cancer, but the moment will come when it will begin to make sense; when that happens, a sense of empowerment will come with it.
In 2015, I looked for programs that support people with cancer and found First Descents (located in Bryson City, NC). First Descents provides life-changing outdoor activities—whitewater rafting, whitewater kayaking, rock climbing, and surfing—for young adults who have been affected by cancer. I participated in First Descents a day after I graduated from college, and for the first time in 2 years I felt I could connect with people.
First Descents helped me come to terms with my diagnosis. So much of the time during my cancer diagnosis I felt like I was trying to swim upstream; I was trying to swim back to familiarity, to a life I used to live that was disappearing. The more I struggled with trying to get back to that, the harder my road to recovery was.
One of the things I got out of First Descents and whitewater kayaking was that even though there are so many bends and corners I can’t see, as long as I let go and trust the process, it will inevitably take me to where I am today, which is a more fulfilling life that I am not sure I would have had the sense to appreciate had it not been for multiple myeloma.
The Multiple Myeloma Research Foundation (MMRF) is another great resource for support. I connected with the MMRF during the 5K run in Boston this past spring. It was everything I could want for in one day—seeing other people who understand multiple myeloma. There is not as much awareness of this type of cancer as for some other cancers, so being with people from this foundation who raise awareness of the disease was great and helped me to feel better.
A Blessing in Disguise
How has multiple myeloma changed my life? First, I’m much more conscientious about my health. I try to maintain a healthy routine, because I have been on the other side of the spectrum, when it would physically take everything I had to get out of bed. Getting a total hip replacement created this sense of momentum—that once I could get out of bed and put my feet on the floor, I wasn’t going to take my second chance at life for granted.
I wanted to show my appreciation, and give back. This propelled me to get into medical device sales. I now have a sense of direction that I probably would not have had without a multiple myeloma diagnosis.
This diagnosis also made me more appreciative and loving of the people in my life. And the day-to-day worries that would normally cause stress now pale in the face of what I’ve endured. Something happens one day, and it all starts clicking: you start seeing why this incredibly difficult and horrifying journey is actually a blessing in disguise.