Pat Killingsworth Pat Killingsworth

Meet the IMF’s patient representatives from last year’s ASH

I’m home from the hospital, feeling better and settling-in for what I hope turns-out to be a great 2012.

But I would like to hit the rewind button for a few days, re-visiting my trip to ASH in San Diego.

The IMF paid my expenses.  In return, I wrote a several patient blogs for them about ASH.  I also attended a number of different meetings and events, posting about them on this site as well.

But I wasn’t the only patient involved.  I spent some quality time with a number of other myeloma patients in San Diego.

Here is a picture of the group following the Foreign Press event at the end of the conference.

That’s Michael Tuohy in the center next to me on the right.  Pat Harwood is standing to his left in front.  His wife, Robin, is standing just behind Pat.  Robin is the IMF’s Support Group Coordinator.Upper left is San Diego myeloma support group leader Elliot Recht.   Jack Aiello is to his right.  Nebraska’s Dr. Jim Omel is standing between Atlanta’s Nancy Bruno and Jack.  Cindy Ralston from Kansas is on the far right back.

I learned a lot sitting next to these folks in meetings and presentations, at meal time and traveling to and from different events.

I had met Nancy a year ago while I was speaking at an event in Altlanta.  She is a former caregiver, having recently lost her husband.  What a can-do personality!

I knew Michael (survivor) and Robin from former IMF events.  Robin works so hard helping organize support groups all across the country.  But the couple doesn’t just work all of the time–hope they don’t mind me sharing that they are both a lot of fun!

I have lost track of just how long most of these patients have lived with multiple myeloma.  But like the others, Michael has been around for twice as long (or longer) than the median life expectancy numbers would have predicted.  As a matter of fact, I was probably the last from the group to have been diagnosed.  Surviving nearly five years is just a warm-up when you were spending time with this group!

Cindy has used a combination of conventional and alternative medicine to keep her myeloma at bay for a number of years.  We shared a fascinating 30 minute conversation about acupuncture and ancient Chinese herbs standing by the elevator late one evening before heading up to our rooms.

Elliot runs a large support group in the San Diego area.  He helped me learn my way around while I was out in California.  Much appreciated, Elliot!

I knew Pat Harwood from my days living in Western Wisconsin, only an hour from Minneapolis/St. Paul.  Pat co-founded the support group there.  An allo transplant survivor of almost 14 years, Pat battled graft/host disease for more than a decade before relapsing recently.  But she is doing great and it was wonderful to see her.

Let’s see–who have I forgotten.  Oh yes!  Jack Aiello.  A fellow blogger and long time survivor, Jack is also doing well.  He is very knowledgeable, working often with the IMF at events big and small.  Sometimes he teams-up with phot0 journalist and leukemia survivor Andrew Schorr.  Andrew was also at ASH.  He recently released a series of video interviews he conducted while he was there.  I ran a link to these yesterday on my MyelomaNews.com site yesterday.

And last but not least, I think I spent more time with Jim Omel than anyone else there.  He is also doing very well after being diagnosed around a decade ago.  Battling myeloma forced Jim to retire from his medical practice, but you can bet he brings an informed perspective to long-term survival.  We got to know each other walking through downtown San Diego on a wild Sunday night (Seriously, that place was rocking!) on the way to a reception hosted by Onyx Pharmaceuticals.

Spending quality time with these active, engaging, long term myeloma survivors was incredibly inspiring!  Based on their experiences, I should be around for quite a while–and I like that!

Tomorrow I will share some pictures from the drug company exhibits at ASH.  What a production!

Until then, feel good and keep smiling!  Pat