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Thoughts From A Memorable Night

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Thoughts From A Memorable Night

I’m back. The oysters were hot and tender. What a fun place Mother’s Restaurant is! It was recommended to me on my flight here from Tampa by a interesting, pleasant woman, Julie Barreda, who runs a culinary tour company. Doesn’t that sound like a great gig, leading fun eating tours to places like New Orleans, France and Italy? Who knew Mother’s would be located so close to my hotel? Real New Orleans flavor! (pun intended!) I’m not sure how “Mother” would view my taking her oyster meal back to my room to eat while I work, but I ate it all and I’m back on-line.

The International Myeloma Foundation’s event tonight was more than a “cocktail reception,” as described modestly in the weekend’s itinerary. Honorary presenter, Dr. Robert Kyle, along with IMF President Susie Novis, rewarded a number of different international myeloma researchers with impressive plaques and even more impressive grant checks!

In a week or so I will begin a writing a series about these researchers and their projects. But as I smiled and watched the presentations tonight,one thing became clear to me and my friend, former NFL linebacker and fellow myeloma Elijah Alexander standing next to me: You don’t need to speak English in order to be a great researcher! Overhearing Elijah, another guest remarked, “You know, math is the universal language!” How true! Myeloma doesn’t care where you are from or what language you speak–it is relentless and deadly. We were touched and so appreciative as researchers from Europe, Japan and Latin America made their way to the front of the room, smiling, to graciously accept the life-blood of their profession–more money to help them continue their innovative, important work.

The highlight of my evening was the opportunity to meet two of the most important and distinguished myeloma experts in the field today: Dr. Kenneth Anderson of Dana-Farber Cancer Institute and Harvard University Medical School, and Dr. Robert Kyle, winner of the 2008 Wallace H. Coulter Award for Lifetime Achievement in Hematology and current Director of the International Myeloma Foundation’s Scientific Advisory Board, as well as a professor at the Mayo Medical School in Rochester, MN.

Dr. Kyle was generous enough to spend 20 minutes with me after the presentations. We soon discovered a shared passion–the importance of myeloma patients taking responsibility for their own health care. This wasn’t a formal interview. I wasn’t taking notes–and how could I–this unseasonably cold New Orleans weather, and my worsening neuropathy has left my fingers so numb and stiff I can barely sign my name. But it was fascinating watching Dr. Kyle nod approvingly as he reminisced about positive changes in physician’s attitudes recently. “Many doctors in my day were afraid to admit they didn’t know the answer to a patient’s question. They didn’t want to work with informed patients.” Dr. Kyle continued, “The doctor was always right and always knew best. Today, most physicians prefer to work with an informed patient. Medicine is becoming more and more specialized. We may not always know the answer, but we should know where to find it.” Dr. Kyle then complimented one of the evening’s patient speakers, Amy, who I interviewed earlier in the day. We both agreed she gave an inspired speech as she recapped her difficult early experiences with two, uninformed oncologists in Washington, D.C. “How is that even possible?” I asked Dr. Kyle. “That happened last year. Shouldn’t those oncologists have referred her to a specialist–someone who knew what they are doing?” Dr. Kyle agreed and added, “I may not know much about lung cancer or breast cancer, but I do know how to get my patient help from someone who does!”

So true, doctor! So true. “Every myeloma patient should go to a regional myeloma research center immediately after they are diagnosed for a second opinion.” I volunteered. Once again, Dr. Kyle agreed and added, “That patient doesn’t have to travel back for their day to day care after they are checked-out and a treatment plan established for their local oncologist to follow.”

I said it this morning and I will say it again–and again–and again: Every myeloma patient needs to seek a second, or third, or fourth opinion!

My Wisconsin Badger Football Team (I’m a UW grad, class of ’79) has just kicked-off to Hawaii for a late evening game out in the Pacific. If they win, the team is headed to Tampa for the Outback Bowl and my wife Pattie and I can see the game without needing a plane ticket this year. I’m not sure I can stay awake for the entire game–it’s already 11 PM. I need my rest for tomorrow’s busy day.

I do want to give a special “shout out” to my friends and supporters from the IMF, Millennium and Celgene, who have helped me feel like family this weekend–and like what I do really makes a difference! Feel good and keep smiling! Pat