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Sunday, May 5, 2013

Reporting from Reindeer Mountain


Shot that this morning at 6:30 a.m. from my motel balcony. When my late daughter Sissy (born in Seattle) was a young kid, she called Mount Rainier "Reindeer Mountain" (she also pronounced "spaghetti" "busketti.")

Sissy, top, age 7, Danielle, age 5
Thursday one of my long-time PacNW friends texted to advise that the wife of our dear mutual friend Kurt was on life support and was dying and that the family would be having a "pull the plug" meeting on Friday.

They removed the respirator. Cyndy died about 45 minutes later at about 11 a.m. Friday as Kurt and their son Kasey looked on.

A punch in the gut. I booked the next available flight. Got to Kurt's about 6 p.m.

What makes this story searingly difficult is that Kurt has been battling Mantle Cell Lymphoma (MCL) for eight years, and is yet again -- for the 10th time -- in relapse.
There are no proven standards of treatment for MCL, and there is no consensus among specialists on how to treat it optimally. Many regimens are available and often get good response rates, but patients almost always get disease progression after chemotherapy. Each relapse is typically more difficult to treat, and relapse is generally faster.
Five years ago I blogged about Kurt's plight, and our music community's attempts to help.


The man who answered the door in Tacoma last night looked like he'd just come from the Ground Zero of Zombie Hell.

I am rather at a loss for words at the moment, something that my friends will no doubt note rarely ever happens.

UPDATE

FROM MY YOUTUBE NOTE
My dear friend Kurt, who has been fighting off Mantle Cell Lymphoma for 8 years, lost his wife Cyndy 48 hours ago. I'm over at his place in Tacoma. I started singing "Lean on me," which spurred him. "Let me play for ya this tune I wrote 4 years ago. It's my 'Lean on me'. It's on a CD out in the car."

This is off my iPhone. BobbyG's Left Hand Unsteady Cam Productions.

Self-explanatory. This glorious musician-writer (with whom I shared a stage 39 years ago) and his family have been reduced to crushing penury by nearly a decade of acute, life-threatening illness. Now with personal tragedy piled atop it.

Lean on me, bro'.
Kurt playing at another benefit gig in 2009, in relative remission at the time, but addled by chemo neuropathy. Still, he showed his fire. The venerable Tower of Power song "What is Hip?" He said he was just freakin' that he'd drop his sticks.


Shot that from Kurt's front porch.

MONDAY MORNING UPDATE

I hate that I have to go back to Vegas this afternoon, but I think my presence here has been helpful to my ailing, grieving friend. It's gonna be a tough haul for Kurt and his son Kasey, but I will always be there for them.

In my inbox when I awoke at 6 a.m., just a short while ago.




This is the most exciting, momentous time in the history of medicine. For the first time, we can rapidly and affordably sequence a human genome. We have sensors that can remotely track virtually any physiologic metric, from vital signs to glucose to intraocular pressure. We can add a lab-on-a-chip to a smartphone to assay almost any routine chemistry and digitize pills to ensure adherence. Or use a smartphone to conduct all the components of the physical examination. This is superimposed and convergent with a remarkable digital infrastructure that includes ever-increasing bandwidth, pervasive connectivity, cloud- and supercomputing, enormous social networks, and those little mobile devices that we cannot put down.

Medicine is thus poised for its biggest shakeup ever as it transforms to a more precise, individualized, and democratized model. My charge at Medscape is to help capture this excitement, the changes and opportunities, along with the challenges and the need for validation. Medscape will be expanding its breadth of coverage in areas that will be rebooting, which include not only diagnostics, imaging, and medical devices but also the operational aspects of office visits, hospitals, and medical informatics. We have an outstanding team of experts across all medical disciplines, and we'll provide you with timely and insightful commentary on the most important topics in medicine.

We intend to take Medscape to the next level, one that embraces the need for change and zooms in on the ways to get there -- the ways to provide better, more efficient care for your patients. We are all connected, with only a few electrons that separate us. I welcome your ideas and feedback about Medscape, so please direct emails to etopol@medscape.net or follow me on Twitter at @EricTopol.

Sincerely,

Eric J. Topol, MD
Editor-in-Chief of Medscape
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Congratulations, Dr. Topol. You are one of my heroes in Medicine. I watched with rapt attention during your Keynote at HIMSS13 in New Orleans.

What do you have in your bag of tricks with which to eradicate Mantle Cell Lymphoma? I don't want to lose my friend. Sigh...

CHECK A QUICK READ OFF MY BOOK LIST



This wasn't available in Kindle edition, so I bought the hardcopy. Worth it. Private duty nursing is a tough field, as these ten exemplar stories reveal. Written at a conversational level, this was a nice respite from the dense, technical stuff that comprises the bulk of my never-ending reading load.

Kudos, nurse Downes.

HIPAA INFOGRAPHIC

Common Myths About Health Care Compliance

Nice. Embedded from HIPPOmsg.com
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More to come.

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