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Spotlight on exceptional members of myeloma community

Posted on January 18 2014 by Pat Killingsworth | 688 views

Writing Wednesday’s Patient Snapshot post about Howard and Teresa got me thinking.  I couldn’t help but reflect back on so many “myeloma friends” I’ve made in the past.

I wrote a blog post about this for the IMF back in the fall of 2012.  I never ran it here.  Allow me to share it with you now:

Support Group Leaders Wear Their Big Hearts and Hometown Pride on Their Sleeves

Pat's IMF headerMy life was deeply touched this fall by three special, hardworking couples: Karl and Lorraine Vollstedt, Howard and Teresa Martinson, and Harold and Sue VanDuyn. Each went out of their way to welcome me into their local myeloma support group community.

With the help of myeloma survivor Barb Davis, Karl and Lorraine are co-leaders of the Stillwater, Minnesota Multiple Myeloma Support Group. I met them when I attended my first ever support group meeting five years ago.

I am fond of telling anyone who will listen that the education I received—and the friendships I made there—helped save my life.

After a number of years, Karl is still alive and kicking. Myeloma and advancing years have taken their toll on Karl. And Lorraine recently had both knees replaced, along with a painful foot surgery. But you wouldn’t know it by talking with them—two of the most positive, upbeat people I have ever met

Lorraine was kind enough to invite me to stay with them during my recent visit north. I was scheduled to speak to a myeloma support group in Minneapolis, but I set up my schedule to allow me to spend a couple extra days with Karl.

We drove into the city for a tour of Target Field, the new Minnesota Twins’ ballpark. We visited a homeless center there, too; Karl is a member of their board of directors.

And speaking of homeless shelters, my new friends and support group leaders, Howard and Teresa, in Spokane, Washington, also help to run a shelter in nearby Coeur d’Alene, Idaho.

What?  Like dealing with their own cancer and helping other patients and caregivers—doesn’t keep them busy enough? Amazing!

I met Howard and Teresa—and our third couple, Harold and Sue—in Dallas at the IMF’s Support Group Summit. Harold had just introduced himself when he started bragging-up their hometown of Grand Rapids, Michigan. They invited me up to speak to their group and I eagerly accepted.  Even thought Grand Rapids is the state’s second largest city, there wasn’t a support group for myeloma patients anywhere to be found nearby. So of course, this energetic couple started one ten months ago.

With the help of the IMF, the new, fledgling group is already amazingly successful.  Over 40 patients, caregivers and family members somehow squeezed into a room in the world famous Gilda’s Club to hear my story on Monday. And Harold was right! Grand Rapids was a very impressive city, with new medical and research buildings rising everywhere.

But it’s the people that make Stillwater, Spokane and Grand Rapids so special. Everyone I met was warm and helpful.

Harold and SueHarold only recently recovered from a stem cell transplant, and some of his counts haven’t recovered.  But like Karl and Lorraine, you wouldn’t know it!  Harold may be the patient face of the new group, but Sue pulls everything together.  She’s the organizer.

Isn’t that always the case?  Behind most every helpful myeloma survivor, there is a dutiful caregiver that helps monitor their medications, gets them to appointments on time and helps emotionally hold things together.

At breakfast Tuesday, Harold started rattling-off examples of all the new myeloma friends the couple had made since starting their group.  Right back at you, Harold!  I hope I make the list.  I can’t imagine having better friends than Karl, Lorraine, Howard, Teresa, Harold and Sue!

Three exceptional patient/caregiver teams and support group leaders.  Six exceptional friends.

Funny how a cancer like multiple myeloma can bring out the best in people, isn’t it?

Amazing people like this are the norm in the myeloma community.  One of the silver linings that make our cancer a bit easier to live with.

Feel good and keep smiling!  Pat

2 Comments For This Post

  1. Barb D. Says:

    Thanks for the shout- out Pat!

  2. Pat Killingsworth Says:

    You are a good friend, Barb. Good luck with your stem cell transplant!

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