Here’s a question you’ve probably never seen: How is multiple myeloma like a yellow Volkswagen Beetle? Read on! 

I will never forget the day that I was unceremoniously plunged into the perplexing world of multiple myeloma.

It was an early afternoon in mid November 2008, and I was at home with a backache that I couldn’t seem to get rid of.  My phone rang, and in his stoic, matter-of-fact tone, my family doctor said that my severe pains were not the result of a pulled muscle or tweaked nerves (as I’d hoped), but were most likely the product of an aggressive blood cancer, multiple myeloma.  Further testing to confirm his suspicions would be needed.

Multiple what? After the initial shock of the call subsided, I logged onto the Internet and began sorting through the volumes of myeloma information that rose to the top of the search engines. With a mixture of fear and curiosity, I visited several sources to help conjure up a clearer picture of my foe.

What I uncovered in those early fact-finding hours was awfully scary and confusing.  Language such as ‘incurable blood cancer’, ‘severe pain from bone fractures’, ‘shortened life span’, and more prognostic doom and gloom certainly caught my attention.

I noticed that one of the key descriptors given to multiple myeloma at these sites was that it was deemed a ‘rare’ cancer. Well acquainted with cancers, I certainly believed that it was rare, considering that no one in my immediate circle had ever heard of it, let alone had it.

In its publication, Cancer Facts and Figures 2010, the American Cancer Society (ACS), has determined that a particular type of cancer has to have at least 40,000 reported cases to be considered a ‘common’ type of cancer.

The ACS estimates that in 2010 there were 20,180 new cases of myeloma (11,170 in males / 9,010 in females) in the United States and that roughly 10,650 patients succumbed to the disease during that year.

By way of a comparison between myeloma and various ‘common’ cancers, the ACS estimates that in 2010 there were approximately 102,000 newly diagnosed cases of colon cancer, 217,000 new cases of prostate cancer, 209,000 new cases of breast cancer, and 68,000 new cases of melanoma in the United States. Estimates for various types of leukemia were given at roughly 43,000 newly diagnosed cases. 

Aside from the number of cases reported, I didn’t know the pragmatic distinctions between common cancers and rare cancers. I just prayed that there were enough motivated medical institutions, brilliant minds, and progressive companies working on behalf of myeloma patients to make a difference. I feared that with a low patient pool, there wasn’t enough financial incentive for these groups to enter the arena. Thankfully, I have since witnessed significant activity in the myeloma world.

I am not a fanatical student of statistics, but with roughly 21,180 new myeloma diagnoses in a U.S. population of nearly 308 million, my calculator tells me that about one out of every 15,260 or so U.S. citizens were newly diagnosed with myeloma in 2010. Seems like a lot of people to me.  Maybe I was the one person out of my closest 21,179 friends that was burdened with multiple myeloma.

When I added myeloma to my resume, a phenomenon I call the ‘Yellow Volkswagen Theory’ began playing out in my life. It goes something like this:

Have you ever made a purchase, a bright yellow Volkswagen Beetle, for example, and after getting it home, you start to see more and more yellow Volkswagens on the roadways and in the parking lots? They weren’t necessarily there before, or if they were, you just didn’t notice them. Pretty soon you’re waving at them, having big rallies, and arranging future marriages for your children with other Beetle owners’ children.  Suddenly yellow Volkswagens are everywhere!

Interestingly enough, this life principle also works with myeloma.

The day before I was to travel down to Little Rock, Arkansas, to be evaluated at the Myeloma Institute for Research and Therapy (MIRT), I received another important phone call. A fellow who was a talented musician in a show I’d produced many years before, and with whom I had lost touch, called me from Virginia to wish me well in my myeloma journey. He had begun treatment at MIRT nearly two years earlier.  At 49, I was young-ish at diagnosis, but my friend was several years my junior.  And he was doing well!

His wise, warm, but frankly informative counsel steeled me for what I was to face in the ensuing treatments. I will always be grateful for his reaching out to me.

Okay. Though myeloma is rare, I actually knew someone with it. While I appreciated the personal connection, I was saddened that my friend had to go through this difficult trial. In this case, misery did not love company. 

My little southwestern Missouri town has a population of 1,600 residents. Given the ACS stats cited above, I could easily assume that maybe I was the only ‘recently diagnosed’ myeloma patient living in my vicinity.

Imagine my surprise when I learned that a gentleman who I did not personally know lives just 200 yards from me and has also been battling myeloma for a few years. And then another friend who had appeared in some of my Branson, Missouri, live shows shared that his dad (a local resident) was diagnosed with myeloma and is being treated at MIRT.

While I was going through infusions and stem cell transplants in Little Rock, my wife, our local elementary school’s music teacher, met a student’s mother who was a couple of years ahead of me in the Total Therapy treatment protocol at MIRT.  Shortly after that, the art teacher’s husband, in his 70s, was diagnosed with myeloma.  Tragically, the art teacher’s father had succumbed to myeloma many years earlier.

After I returned to my Missouri home to continue a three-year maintenance chemotherapy plan, I joined a popular myeloma listserv and came across a wonderful guy I’d worked with a dozen years earlier before he moved from our small Ozarks town out to the west coast. He has been battling myeloma for several years and has some harrowing survivor tales. His spirit is amazing.

It doesn’t end there. A lady from my church called me one day and asked if I’d get in touch with one of her neighbors who, you guessed it, was just diagnosed with multiple myeloma. I met with him and his wife both here and in Arkansas. They’ve recently returned home from Little Rock to begin maintenance treatments. 

And just this first week in July, a gentleman from my church, in his 70s, is beginning his treatment at MIRT. And there is another lady from a small town a few miles to the west heading to Arkansas for treatment.

So is myeloma rare? Couldn’t prove it by me.

My mathematically-inclined buddies state that when you get down to it, our local myeloma numbers aren’t entirely unreasonable. An older population, people from all over the country relocating here for retirement, and other factors contribute to a higher propensity for myeloma diagnosis. My half-serious conspiracy theory buddies say that there must be a cluster here. 

These are just some of the nearby connections to myeloma that I have discovered in the last couple of years. It seems like myeloma patients are constantly popping up like shiny, new yellow Volkswagen Beetles.  Perhaps awareness about myeloma is increasing and diagnostic techniques are getting better. I don’t know.

But given my druthers, I’d take the shiny Volkswagen over myeloma any day. Absent that option, I will continue to energetically support and pray for the hundreds of myeloma patients and caregivers whom I’ve met in one form or fashion out there in Myelomaville.

Stay strong, stay hopeful, and stay connected!