Jamie's Blog

Saturday, November 3, 2012

Why Breast Cancer Still Matters AFTER October



The Pinktober frenzy has settled like confetti, meanwhile 108 people die every day from breast cancer. For thousands of women and men affected by this disease, breast cancer is a harsh reality 365 days a year.  The ARMY OF WOMEN and The Dr Susan Love Research Foundation are here to issue a month long reminder that breast cancer still matters. Every day throughout November, their blog will post a new reason to continue the focus on finding the causes of breast cancer. As a proud member of the Army of Women bloggers I will help spread the word here.

  1. Because the goal isn’t the cure, it’s finding the cause and stopping it. More: #30reasons
  2. Because this is not the legacy we want to leave our daughters. More: #30reasons
  3. Because a daughter deserves a life with her mother. More: #30reasons
  4. Because nothing much has changed. More: #30reasons
  5. Because breast cancer is not sexy. More: #30reasons
  6. Because we made a national commitment more than 40 years ago. More:
  7. #30reasons
  8. Because the misconceptions will astound you. More: #30reasons
  9. Because a husband shouldn’t have to say goodbye. More: #30reasons
  10. Because we need to refocus research. More: #30reasons
  11. Because living with a cancer question mark hanging over your head isn’t easy.  More: #30reasons
  12. Because our current methods come with a cost.  More: #30reasons
  13. Because your participation is key and you have the power to help scientists.  More: #30reasons
  14. Because awareness isn’t enough.  More: #30reasons
  15. Because breast cancer does not discriminate. More: #30reasons
  16. Because pink should just be a pretty color. More: #30reasons
  17. Because we can wage a better, smarter war. More: #30reasons
  18. Because it’s hard to make individual decisions. More: #30reasons
  19. Because you don’t need to have cancer to participate in cancer research.  More: #30reasons
  20. Because your health information could be the answer.  More: #30reasons
  21. Because fighting breast cancer is a team sport.  More: #30reasons
  22. Because far too many know the loss of a best friend.  More: #30reasons
  23. Because breast cancer changes lives.  More: #30reasons
  24. Because we just don’t know enough.  More: #30reasons
  25. Because unlocking the mysteries of breast cancer will help put an end to other diseases. More: #30reasons
  26. Because it’s unacceptable to watch more than 280,000 get diagnosed every year.  More:  #30reasons
  27. Because not everyone is a survivor.  MORE: #30reasons
  28. Because the causes remain unclear and we need more research.  MORE: #30reasons
  29.  Because breast cancer isn’t a one-size-fits-all disease. More: #30reasons

Sunday, October 7, 2012

Stanford Medicine X Magical Mystery Tour: Shock & Awe

In my opening blog I admitted that I had no idea what to expect at Medicine X, but that Stanford was working its magic on this hometown girl.  After three days basking in the glory of unforgettable people, brilliant inventions (scan the QR code on my badge!) and collaborative genius, I was rendered speechless for a week. 

In fact, as a Licensed Psychotherapist I invented a new syndrome for the DSM-V: Post MedicineX Bliss Disorder, caused by information overload, brain-drain, and oxytocin induced euphoria.  
Seven days later I have not recovered entirely, but will do my best to share some of my favorite parts in Jackson Pollock splatter style. 

Fascinating Factoids, Memorable Moments, Quotable Quotes

I'm not self-tracking for myself; I'm self-tracking for the next person." @seanahrens

By self-tracking Allan Bailey learned that adding butter to coffee keeps his blood sugar from spiking. @zirpu


Doctors more open to our data if our charts are simple @katiemccurdy


 On shifting doctor/patient roles:

Wrong to assume that patients want to know only what doctors want to explain. ~Susannah Fox  

Physicians no longer control information" - @Doctor_V



  "I just want to work with a doctor who will believe me" @katiemccurdy




 Michael Graves, architect,

 paralyzed from chest down by nervous system infection.

His room had a mirror too high, faucets and electric outlets out of reach! THINK OF IT: Hospital rooms without handicap access!

Graves used self-deprecating humor as he faced tragic illness,  "This hospital room is too ugly to die in." NOW redesigns healthcare facilities for PATIENTS first!

Safety, comfort for patient: to prevent infection use a simple disposable cover over the TV remote control.

Regina Holliday uses her art to tell the all-too-familiar tale of patients unable to get their own medical records


Blood sugar monitor app for smartphones 
Hospital gowns made of smart material that monitors 
vital signs @wearabletech

Everyday clothing with technology built-in without losing comfort and fashion. Sonny Vu

The ICD is "defective by design" data goes to everyone BUT the patient!  Hugo Campos

One million patients with remote monitoring by manufacturers: not ONE PATIENT has access to own data! Hugo Campos

Closing thought:
There is a tension between the power and potential of technology in health care and the essential need for human engagement.  It may be true that, "Health reform is just not possible without technology" (Louise Schaper), but all of the tracking and technology still requires human interaction for full effect. 

Sunday, September 30, 2012

MedicineX HMS Mindblower

It is early Sunday morning; my tinnitus sings like the buzzing of a summer night, and my eyes ache for a caffeine bath.        
I am trying to gather my thoughts in the calm before the whirlwind called "Day Three of MedicineX" scoops me up and flings me into the magnificent maelstrom of genius ideas, poignant e-patient stories, and inspiring calls-to-arms.  

I wonder if my brain can absorb more wonderfulness without making my head explode.  Perhaps if I share a dollop of this experience with you I will make just enough room for more. 

 First night tweetup with me, Alicia, and Liza

@ibeatcancrtwice @stales @itsthebunk

 The Walking Gallery
Project by Regina Holliday

 Regina at work.

 Story of my life: Regina nailed it!

Change Is In The Wind
by Regina Holliday

 Off to breakfast with @stales. More to come!

Saturday, September 29, 2012

RESCUING PINK: The Color, Not The Rock Star

October is just around the corner, its brilliant foliage a harbinger of autumn--of grape vines heavy with purple clusters, of brisk air, apple farms and hot cider, of pumpkin fields and Halloween. 

In recent years October has signaled a different kind of season, with its own signature color and cornucopia: store shelves bulging with beribboned stuff, pink festooned windows and football fields with pinked-out athletes; garbage trucks, toilet paper and  COFFINS.

 This one has 30 pairs of breasts painted on it.

All in the name of breast cancer awareness. Machine guns have awareness ribbons!  
Oh, and kitty litter, so our cats can be aware.

Such crass profiteering from what remains for thousands a deadly disease stirs a tumult of feelings in me, from fury to embarrassment to despair.  

Meanwhile sincere, well-meaning citizens who donate time and money are lulled into thinking that their contributions make a real difference--like ending breast cancer in this century.  

Many breast cancer activists like me are appalled by the growing evidence that garish fundraising tactics serve only to line corporate pockets. We have watched our sisters-in-arms die of metastatic breast cancer. 

Demoralized by these losses, the troops voices have grown more shrill in an effort to be heard over the cheers from Celebrations of Breast Cancer.  The screeching sound of impotent rage grates on everyone's ears ,and might even alienate the very people we want to help. 

To combat this sad turn of events, I will attempt to rescue pink, for it is a perfectly innocent color that was co-opted by the awareness movement because it traditionally symbolized wellness, e.g., 'in the pink of health."  That is why I named my website "Stay In The Pink", because it married the old meaning of pink with the breast cancer ribbon. Unfortunately the exploitation and scandals in the awareness movement have caused me embarrassment with my own website.

So rather than hide my brand in pink-phobic shame I will do all I can to turn the anti-pink tide.

After all, what did pink ever do to me to deserve my wrath?


Thursday, September 27, 2012

MedicineX Magical Mystery Tour

Welcome to the magical mystery tour that is StanfordMedicineX .  This conference is already magical and it hasn’t even begun.  Here’s one big reason why: 

 I was married at Stanford’s Memorial Chapel. 

Yep, that's me in the white dress. Quaint little place, isn't it?
In fact, I am a local girl, a Hewlett-Packard brat from the early days with Bill and Dave.  I grew up in Cupertino when it was nothing but orchards—nary a silicon tree in sight—and lived in one of the first Eichler homes (move over Steve Jobs).
Stanford was my back yard: I used the library during high school, took summer school classes during college; my husband proposed to me in front of the chapel, and we sealed the deal  in that magnificent sanctuary.  You should have heard Whiter Shade Of Pale booming out of that cathedral sized pipe organ as I walked down the aisle to my groom.

Another piece of  magic is that I am attending this conference as a member of the media.  Thanks to WEGO Health Press Corp I get to attend as many presentations as I can squeeze into one weekend, all of them brilliant and amazing, and bring you along with me with my tweets, posts, and blogs. 

The mystery part is that I have no idea what to expect, except that my mind and heart will be expanded beyond imagination.  Just one of the cool things is the Global Access Program so that anyone who wants to follow the program in real time can. It will include streaming video of the conference plenary proceedings, live photos, and other updates. The program is an unprecedented effort to bring Stanford Medicine X live to your desktop, phone, or tablet device.
So follow this link, register and join the fun. 

My twitter ID is @ibeatcancrtwice and the hashtags are #medX and #WHPC for WEGO Health Press Corp.

I am off to pick up my registration materials, so I'll sign off for now. 

Jamie, intrepid reporter.