Community Magazine

It's All Too Much. Travels and Travails of This Leukemia Patient, Advocate and Teacher

By Bkoffman

It's all too much. Travels and travails of this leukemia patient, advocate and teacherThe Spirit of Haida Gwaiiby Bill RiedI am so tired.
It’s all good, but it all too much.
I am returning home from a very successful and delightful few days in Bethesda where I had the privilege to meet the hematology department and address the fellows and faculty about what patients want in their care when I was invited to visit the National Institute of Health.
As any patients who is fortunate enough to get care at the NIH will tell you, the security to get onto the beautiful campus is tight- think TSA at the airport with sniffing dogs and x-rays and metal detectors for any car and all the passengers.
But once you are in- what an amazing group of physician/scientists- brilliant caring men and women doing bench science, clinical research and direct patient care.
I was so lucky to have the opportunity to share my own story and what we have learned from surveying my fellow patients.
We are looking for ways to partner on research in the future.
Before that I had spoken to hundreds of fellow primary care providers on gout on Saturday and geriatric anemia on Friday for certified medical education (CME). My co-presenters are wonderful educators and clinicians. It was great chemistry on stage. We worked hard to make our education relevant and real. The result was that the audience was engaged and complementary. It was great fun. Show time.
One of the best parts of doing this CME again was being back with the same wonderful team that been putting on similar meetings for a decade. Last year the prospect of this happening was bleak. Due to some challenging external forces, it looked as if the end was nigh. However, through some creative and generous partnering, we are all again providing high quality accredited medical education. As one of my long time friends in the med ed world, said: The band was back together.
Some interesting facts:
  • 1.    The guy who does my sound also does the Trump and Clinton rallies and when he is not making me or Donald or Hillary sound good on stage doing CME, he is also one of the soundman for the Rolling Stones.
  • 2.   On my way home from Portugal a few weeks ago, I was 3 feet away from the one and only peripatetic Mick Jagger as we were both at the same customs desk at the same time coming back into the States. He looked fabulous for a 75-year-old man about to father his 10thchild. No entourage. Just one security officer. Sir Mick himself.

Not one to while away my time, I also arranged several in person meetings including one with a wonderful possible development person for the CLL Society, another with one of our CLL Society directors, and another with the hardworking Betsy Dennison who handles our website and grants where we made our end of the year plans.
I managed to schedule a last second telephone interview on CLL and referred two other patients for interviews that were also completed.
I also serve as a director of another nonprofit company. That one accredits CME assuring that it is fair and balanced. In that capacity, I met with the chairman of our board who was attending the same conference where I spoke. We used the opportunity of being together to hold a 90-minute tête-à-tête to negotiate our ongoing mutually beneficial relationship with the two principals of med ed company that was staging the Bethesda CME meeting.
I met the next day with the same folks to discuss how the CLL Society might be looped in on their future educational programs for community oncologists on CLL. We have some great plans if we can pull together the necessary resources.
I managed to squeeze in a quick visit to the Capitol mall to see the marvelously mythical massive Bill Reid sculpture in front of the Canadian Embassy and then walked the few feet down Pennsylvania Ave. to be shocked and astonished at the Newseum.Three hours isn’t nearly enough time for a visit.
Don’t miss either the Newseum or the Bill Reid.
In between, daily I signed into my electronic medical records, reviewed labs, put in orders and refilled prescriptions and also talked to and sent notes to several of my family practice patients back in California.
It was all wonderful- seeing old friends and colleagues and meeting new smart and caring folks with whom we might be able to forge alliances to improve the lot of CLL patients.
Great stuff.
But it is all too much.

I need a long nap.SaveSaveIf you want a personal response, or just want to stay in touch, please email me at [email protected]. I have no other way of contacting. Thanks. Stay strong. After all, we are all in this together. And please visit our website: http://cllsociety.org for the latest news and information.

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