If you didn’t read Sean’s Burgundy Thread: Myeloma & Shiny Yellow Volkswagens ^[1], do not let another minute pass before you do.  Sean did a far better job than I did in Me & My Big Mouth ^[2] of bringing light to multiple myeloma versus the “common cancers,” with terrific evidence of what I alluded to – once you are in the multiple myeloma family, suddenly you find out there are a number of people you know who are, too!

Sean’s column also brought to light excellent statistical information about the number of new multiple myeloma cases reported in 2010 (20,180) versus some of the more “common cancers,” – colon (102,000), prostate (217,000), breast (209,000), and melanoma (68,000). 

But the one that really got me was “estimates for various types of leukemia were given at roughly 43,000 newly diagnosed cases.”  So that number is about double the number for multiple myeloma, but it seems to me, heretofore a casual observer, that the Leukemia & Lymphoma Society (LLS) is far more visible than the Multiple Myeloma Research Foundation (MMRF).

I recently received a direct mail appeal from the LLS, complete with cheerful Ziggy return address labels.  Over the last four years, the LLS has called me several times and asked if I would be a neighborhood captain.  This means they will send me a box of solicitation materials, and I will address these to my neighbors, asking for their support in the fight against blood cancers.

How did I attract their attention?  My best guess is that when I made a gift to the LLS in honor of a dear friend who was battling lymphoma, I hit their radar.  When they have called, with all good intentions, I have agreed to the task.  I must confess, however, that I have yet to distribute these materials to my neighbors, opting instead to send another check.

Now I am sitting here with the Ziggy mailer, and I am torn.  More than ever, I want to be an active participant in the quest to find cures for all blood cancers.  But it is hard for me to get excited about the LLS when the words “multiple myeloma” or heck, even “myeloma” don’t appear anywhere in this mailing.

My educational background is in marketing.  I minored in the subject as an undergrad and hold a master’s degree in the field.  For the last twenty years, I have worked in alumni relations and through training and practice, I know that when someone gives to the LLS, they likely do not associate this gift with helping all blood cancers.  In a similar fashion, those who give to the American Heart Association most probably do not know the work this organization does in the area of stroke.

So, I now turn to the work of the MMRF, which, admittedly, I have yet to fully research.  There is one observation I can make, minor though it is.  In the last three and a half years, I have run 14 half marathons and two 10Ks.  At every one of these races, I have seen a very strong presence of the purple shirts proudly worn by the LLS’ Team in Training.  What I have not seen is anyone wearing the orange MMRF’s Power Team ^[3] shirt.

There are so many things I want to do to help bring awareness to multiple myeloma, selfishly, so that we can find a cure during my sister’s lifetime and extend her time with us.  Like many of us who have a loved one we support, we may have jobs and families of our own, so we don’t have the luxury of devoting our every waking moment to multiple myeloma awareness.

Let me propose that we all consider one thing we can do, no matter how small, and do it in the next two weeks.  I’d be really interested in hearing from readers about what activities they have engaged in since becoming part of the multiple myeloma family.

After Me & My Big Mouth, I had begun thinking of what my theme would be for this article, and the call to action seemed like the appropriate way to follow up on my concerns that multiple myeloma is “lost in the shuffle.”  Sean’s column was a sign for me that it was time to start taking the next steps.

Before you hear from me again, I am going to commit to checking my calendar against the MMRF Power Team schedule and if there is a race I am able to do, I am going to sign up for it.

I’ll do other things, too, like continuing to send Deana an encouraging card each day, which for me is an important way to put something physical in her hand to let her know I care.  She worried I was going off the deep end the day I sent one from my three dogs, so they have stopped corresponding with their aunt.

The last book I finished was “Sole Mates,” an account of a 3,000 mile walk a couple from Washington undertook in 1996 to raise money for Habitat for Humanity.  They walked across the United States, finishing in Atlanta in time for the 20^th anniversary celebration of this outstanding organization.  One quote from the book which resonated strongly with me was:

“Fulfillment of dreams does not come easy.  It is with struggle that we appreciate the accomplishment.”

For those of us, patients and caregivers, who dream of a day where there is a cure for multiple myeloma, it will be a joy beyond description to celebrate that accomplishment.  Until that time, we’ll appreciate all our progress and the effort needed to achieve it.