Help lung cancer doctors learn about patient decision making

decision making

If you are patient with lung cancer, or a caregiver of a patient with lung cancer, please consider completing this 15-minute survey. It was created by Dr. Laurie Gaspar, a radiation oncologist at the University of Colorado, to gather information about:

– How prepared patients are for making difficult decisions?
– How involved patients are in the decision process?
– What would help to improve the decision making process?

The study results will help doctors, patients, and caregivers understand how the process of making decisions about lung cancer treatment and care might improved.

The survey is here:

Looking forward: 2016 AACR Annual Meeting and the Scientist-Survivor Program

Microscope

I recently learned I was selected to participate in the American Association of Cancer Research (AACR) 2016 Scientist-Survivor Program!  I’m excited to be attending the AACR Annual Meeting this April in New Orleans.  Thanks to the Bonnie J. Addario Lung Cancer Foundation for sponsoring my application.
I’m looking forward to networking with researchers as well as meeting advocates for other types of cancers to discuss their work.  I’ll also be presenting a research poster on Lung Cancer Social Media (#LCSM) on Twitter, which offer a unique opportunity to connect with all types of stakeholders in the lung cancer community — patients, caregivers, healthcare providers, researchers, hospitals, pharmaceutical companies, advocacy groups, and insurance payers.  Afterwards I plan to blog about the experience and share some of the exciting research presented at the meeting.
After the meeting, I’m going to have a few days vacation to enjoy New Orleans (which I’ve never visited).  I’ll then take The City of New Orleans Amtrak route to Chicago, followed by another train to Boston.  I’ll arrive just in time to present at another conference (GET 2016) at Harvard the next day! I had originally planned to take the Sunset Limited from New Orleans to LA, but after I was invited to GET my travel coordinator (e.g., hubby Gerry) could not find any place where I could disembark along the way and fly to Boston in time for the conference.  After GET, I’ll take a train to Washington DC, where I’ll be a speaker at LUNGevity’s National HOPE Summit.  Whew!
Glad I have willing housesitters who love (and are loved by) the cats.

My Norwescon 39 Panel Schedule

nwc 2016 banner

The Norwescon 39 Science Fiction Convention happens March 24-27, 2016, in SeaTac, Washington.  I will once again be a science panelist.  You can find me on the panels listed below, or maybe hanging out in the bar with other writers and science geeks, scarfing down a snack in the Green Room, or wandering the corridors on my way to the art show, dealers room, a friend’s reading, or an interesting panel.  hope to see you there!

 

BIO21 – Blinded by Pseudoscience
Fri 6:00 PM-7:00 PM – Cascade 3&4
Gregory Gadow (M), Janet Freeman-Daily, Caroline Pate, Dr. Misty Marshall, Jake McKinzie

TEC05 – Real Radiation for Writers & Readers
Fri 8:00 PM-9:00 PM – Cascade 5&6
Mike Brennan (M), Janet Freeman-Daily, Arthur Bozlee, Daniel P. Lynge

BIO20 – Facts & Fictions of Cancer
Sat 1:00 PM-2:00 PM – Cascade 5&6
Janet Freeman-Daily (M), Dr. Misty Marshall, Vickie Bligh, Nicholas Maurice

BIO16 – Ask the Experts: Biology
Sat 2:00 PM-3:00 PM – Cascade 5&6
Alan Andrist (M), Janet Freeman-Daily, Caroline Pate, Dr. Misty Marshall, Nicholas Maurice

TEC01 – Remembering In Tomorrow
Sat 7:00 PM-8:00 PM – Cascade 9
Sean Hagle (M), Janet Freeman-Daily, Michael Ormes

BIO19 – Evolution Is Just a Theory!
Sun 10:00 AM-11:00 AM – Cascade 5&6
Dr. Ricky (M), Janet Freeman-Daily, Alan Andrist, Michael McSwiney, Jake McKinzie

BIO03 – Future Pharma
Sun 2:00 PM-3:00 PM – Cascade 5&6
Janet Freeman-Daily (M), Caroline Pate, Vickie Bligh, Nicholas Maurice

How do you see a good death?

An emergency room physician has written a great piece comparing what dying is like today compared to a century ago.  The experience today isn’t necessarily better. Everyone needs to read I Know You Love Me — Now Let Me Die by .

The majority of humans will experience a gradual decline and loss of function in their lives before they die. Everyone–healthy or otherwise–needs to talk with loved ones NOW about what quality of life means, and how they would prefer to spend their last days. Because we WILL die.

Unfortunately, one can have all the Advance Directive paperwork in place and still have one’s wishes overridden by the hospital if the papers are not in the right hands at the right time. Also, Advanced Directives cannot cover every possibility–for instance, do you want your pneumonia treated with antibiotics if you’re already cognitively impaired by dementia? That’s why it’s so important to make sure loved ones know your wishes and will ensure they are carried out to the best of their ability.

Visit The Conversation Project to get started.

Tropical Sniffles, or Under the Wonderful Weather

 The night before we left for our Hawaiian vacation, I had developed a stuffy nose and sore throat, and slept only three hours because I couldn’t breathe through my CPAP.  On the plane, I went through an entire pack of Kleenex.  In the Kapaa condo, I collapsed at 8 PM with a fever, but awoke at 1:30 AM with screaming sinuses.  To avoid waking hubby, I hung out in the darkened bathroom playing Whirlyword on my phone with tissue stuffed up my nose for two hours.  I finally got back to sleep around 3:30 AM.

This morning, I awoke to guava juice, sunshine, tropical breezes, a balcony overlooking a lovely garden, and the crow of Kauai roosters.  If I’ve got to be sick, this is the sickroom I want!

  
Today was a Kauai afternoon with 3 generations of family, good Hawaiian food, whales breaching offshore, the sound of crashing waves below, and a stellar sunset. I just sat in a corner of the lanai and soaked it all in while life happened all around me.

  
 I am sated.  Sometimes it’s enough to just BE.

————–

Thanks to Steve and Gerry for crowdsourcing the blog title

Take It Personally: How decoding your genes might unlock the future of health care

Denver’s “5280” magazine just published a terrific article on precision medicine called  Take It Personally: How decoding your genes might unlock the future of health care by Julie Dugdale (click on the link to read it). It’s a top-level summary of the benefits and issues that arise from using genomic data in medicine.  One of the main players in the article is the University of Colorado School of Medicine, and some of the providers I work with at CU are quoted (Dr. Dara Aisner and Dr. Robert Doebele).

P.S.  I play a bit role in the article (as a lung cancer case study)

 

 

2015 in review

The WordPress.com stats helper monkeys prepared a 2015 annual report for this blog.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 60,000 times in 2015. If it were a concert at Sydney Opera House, it would take about 22 sold-out performances for that many people to see it.

Click here to see the complete report.