Reflections on Ten Years With a Myeloma Diagnosis
This morning I realized it was the 10 year anniversary of my myeloma diagnosis. I spent some time reflecting, feeling grateful and crying. Having myeloma is a swirl of mixed emotion.
I still remember the day I found out. We were living in Mexico and I had completely ignored pressing kidney symptoms and fatigue for weeks. delaying care until we could return to Utah to spend summer vacation there. Even then, I didn't make an appointment until the problem dragged on and on. Finally, on our Montana vacation, I made an appointment because my sister-in-law volunteered to babysit the kids. I almost didn't go that day because the blood in my urine had stopped. I drove 2 hours to the nearest hospital to get a PET scan. A week later back in Utah, I was driving alone when a call came from the Bozeman doctor. He said "Your kidneys look fine - but your spine and pelvis are full of holes. It's probably cancer and you need to get checked right away." My reaction was odd - I was shocked, but calm. I didn't cry. I called my husband and told him the news. Our family had lived a traumatic cancer experience six years prior with my husband's younger brother, and we had learned valuable lessons about how to navigate a cancer diagnosis. I felt strangely prepared.
But knowing what you are in for doesn't necessarily make things easier. We jumped into consult visits - first with a general oncologist and then by a myeloma specialist when we realized the oncologist was great at treating common cancers, but probably not myeloma. The oncologist wanted to start me on treatment within days but hadn't done proper testing. This time we asked more questions. We searched for an expert. We were looking for data to make life saving decisions but there wasn't much, and the experts disagreed. I took time to cry. This was hard.
We waited for our oldest to get back from his Boy Scout Jamboree trip and then we sat with our kids in the backyard of my sister-in-law's house and told them the news. At the time they ranged in age from 2 - 15. We all cried, because cancer affects everyone.
I trusted Dr. Guido Tricot and chose tandem transplants because I was young, healthy, and had watched David wait too long for a transplant. I was in good hands with Dr. Tricot at Huntsman and then later with Dr. Robert Orlowski at MD Anderson. I was away from my family in Utah during the transplants while they returned to Mexico. It's hard to keep six young kids away from mom when she's completely immunocompromised for six months. My husband was stellar and amazing.
Traumatic memories have a tendency to stick around. I remember a lot about my treatment - my lovely caregiver friend Sharon, my sister visits, my backyard head shaving, my ICU visits at the same time my daughter broke her femur, the great care I received by my care teams, my husband's father dying, trying to get treatment (unsuccessfully) in Mexico, my weekly trips to Houston for maintenance therapy and more. I was not myself, and wanted to tell everyone that hadn't known me before my diagnosis that this was not the real me. I didn't know how to say that.
Once I was finished with therapy, my daughter wanted me to go to the gym with her and work with a personal trainer. It was the last thing I felt like doing, but because I love her, I did. The trainer had no clue what treatment fatigue felt like, but my daughter was having fun. After awhile, I was too. For some reason, the workouts triggered both a physical and mental change in me. I woke up. My husband and I started co-creating, identifying ways patients could help accelerate a cure for myeloma. We realized that no one had invited the most important stakeholder a seat at the table. So we pulled up our own chair. Did I already say he is amazing?
The ideas became what is now the Myeloma Crowd: the radio program interviewing myeloma experts (such fabulous people doing so many good things), the Myeloma Crowd website, the Round Table meetings, the Coaches, HealthTree and HealthTree University. People like Lizzy Smith, Allyse Shumway, Greg Brozeit, Rozalynn and Richard Hite and our entire development team came out of the woodwork at the exact moment they were needed. I met new myeloma friends like Jack Aiello, Yelak Biru, Jim Omel, Cheryl Boyce, Gary Petersen, Eric Hansen, Paul Kleughten, Dana Holmes, Pat and Pattie Killingsworth, Cindy Chmielewski and hundreds of others who I consider to be close friends and wonderful advocates. We had volunteers show up including our generous Myeloma Coaches who said yes, they would help others along the way. I've met lovely people at the pharmaceutical companies who do care about curing patients, smart and caring myeloma specialists and others who contribute every day to furthering a myeloma cure. The blessings have been overwhelming.
Immediately following my initial treatment, I expected to relapse quickly. I have always felt like I was playing "beat the clock" and that I'd better get to work if we were to contribute to progress. I knew what being on treatment felt like and I knew how different (i.e. terrible) it made me feel. After about 5 years of intense work on the Myeloma Crowd, it began to dawn on me that my myeloma wasn't behaving as high risk disease. I had been given more time. But not long after, my myeloma was again detectable. I guess I'm not supposed to get too comfortable.
Today it hit me extra hard that I've been watched over, cared for and supported by my family, friends and by my loving Creator. The hard things about myeloma didn't go away, but I have been given extra strength and capacity to carry the burdens I've been given, and in the process I've been given the opportunity to change. It has been miraculous.
And in the past 10 years, I have changed. Not in spite of myeloma, but because of it. Myeloma pushed me to build skills and talents I never would have developed. Myeloma gave me a heightened sense of awe and purpose about my mortal life. Myeloma expanded my thinking, challenged me to the edge of my capacity and made me take steps into the uncomfortable unknown. Myeloma helped me become a better collaborator and creator. Most importantly, myeloma allows me and my family the opportunity to serve others who are suffering together.
Ten years later, the two year old is now twelve. Some of my kids are in college, getting married and chasing their own hopes and dreams. But some things haven't changed. I am still losing beloved friends to this dreaded disease. I still have a hard time sleeping the day I go in for labs. I am still stressed before consult visits. I still hate bone marrow biopsies. I may still die of multiple myeloma.
But I have goals, dreams and lots of plans. We won't stop our work with HealthTree and the Myeloma Crowd until there's a cure. In the next decade, we hope our contributions will continue to relieve burdens for myeloma patients and make meaningful progress in the global effort to find that cure.