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Support Group Magic!

Support Group Magic!

I was so excited to see Stillwater, Minnesota myeloma support group founders, Karl and Lorraine Vollstedt, and co-leader, Barb Davis, featured in a major news article in St. Paul, Minnesota’s Pioneer Press newspaper.  The occasion:  The group’s 100th consecutive monthly meeting!

Before I get started, let me share an unrelated note.  Pattie helped me with a post yesterday on Help With about the new, blockbuster report about cancer risk in workers exposed to toxins at Ground Zero in New York City.

Apparently, officials were impatient and crazy enough to presume that one could extrapolate any useful cancer developmental data from a study less than seven years long.

The blockbuster part?  The study found little evidence of any increased cancer risk.  They did identify “a type of blood cancer” as one of the cancer’s that did measurably increase above expected averages.  Of course, you and I could guess that “a type of blood cancer” would be and is: multiple myeloma.

Seven years?  It takes a lot of 3 pack-a-day smokers 30, 40 years or more to develop lung cancer.  Ironic, since the article ends with an expert from M.Dl Anderson in Houston expressing his surprise that “no increased risks were found for lung cancer — a cancer that might seem plausible after breathing lots of toxic dust and smoke.”

CLICK HERE to read all about it.  Reading and writing about this almost made my myeloma ravaged blood boil!  Guess we take one step forward (Pioneer Press article about multiple myeloma) and two steps back when a nationally syndicated article doesn’t even mention multiple myeloma by name.

But let’s focus on the positive.  Back to a wonderful human interest story that hits close to (my former) home.

The reporter, Ruben Rosario, was diagnosed with multiple myeloma a year or so ago.  He continues to write and so far hasn’t let his diagnosis slow him down much.

Mr Rosario (I have never met him) rarely writes about his cancer.  That’s why it was so cool that he decided to cover the Stillwater, Minnesota groups’ 100th meeting and celebration.

“There may be something to this support group thing after all. No kidding.” The usually cynical Rosario wrote.

But this day wasn’t about him.  It was about my good friends– group founders Karl and Lorraine Vollstedt–that I have written about here before.  And how about allo transplant survivor Steve Joachim, a contributor to my book about stem cell transplants.  Steve (left), Karl and another old friend, JoAnn Weil, are pictured below:

I believe this was the picture selected to run in Saturday’s print edition.  I haven’t seen that yet.

But a great feature of the online edition is a slideshow of 9 different pictures that Rosario’s photographer took at the meeting, including one of my books, used as an example of how members can get and share information at meetings like these.

The article starts-out featuring news about member Don Wright’s recent triumph: running marathons in all 50 states since his myeloma diagnosis eight years ago.  I will post a story about Don that I’m working on soon.

Read the following excerpts if you would–then click-on the link below and enjoy the entire article.  I pick-things-up midway through the first page:

Ruben Rosario: Battling cancer, but not alone, at Stillwater support group

December 15, 2012

There must have been a snowstorm or some other emergency that derailed at least one meeting, I said to Vollstedt as his wife, Lorraine, stood by his side.

“Not one,” the retired 3M supervisor said with pride. “Isn’t that something?”

From listening to medical experts, learning about financial assistance and innovative treatments, to comforting each other and taking trips together, members have become an extended family over the years.

“For myself, I can’t imagine how my life would be without this group,” said Davis, who joined in 2007 after she was diagnosed with multiple myeloma. “I joined the group as a very sick woman, went through a difficult stem-cell transplant and am now very healthy. This gives others hope…”

I’m so proud of all of you!  I wanted to be there, but I would have needed to take the red-eye from Atlanta to make it.  Good friends, mostly good times–one of the few advantages of having bone marrow cancer–and a lot of life saving memories.

Coincidentally, I wrote about how important this group was to me from ASH in a post I did for the IMF last week:

Don Wright helped save my life!

And here is the link to Saturday’s feature story in the St. Paul Pioneer Press:

I included the entire address, just in case the link is ever broken.  That has happened a lot lately, and I rarely have time to go back and try and fix them.

If you would, take the time to scroll through the pictures.  And note the emphasis Mr. Roserio puts on the need to reach African Americans with multiple myeloma, a pressing need for an under served and overrepresented ethnic group.

If I didn’t know better, spending time with the group got to Mr. Rosario.  That’s a very good thing.  My experience from speaking to dozens of different myeloma support groups has been that they are never pity parties.  Instead, old friends and unfortunately some new ones, get together, learn, laugh, cry (only once in a while) and live better lives than if they tried to go-it-alone.

Thanks to support from the IMF and companies like Millennium, groups like this one are sprouting-up all over America.  How inspiring!  How hopeful!  I feel like laughing and crying–all at the same time.  I miss you guys!

Feel good and keep smiling!  Pat