Hyperintensities

Last Monday and Tuesday, September 8-9, I was in Denver for my clinical trial at University of Colorado Hospital (UCH). I had my once-every-eight-weeks PET-CT scan along with a once-every-six-months brain MRI.

I’m happy to report that both scans were clean. I’m now twenty months with No Evidence of Disease of metastatic lung cancer.  That Xalkori is great stuff for those of us with ROS1 NSCLC!

I’ve been in my clinical trial for 22 months, and the trial has been running for over three years. The medical journal article summarizing trial results is due out sometime in the next two weeks.  Judging from the response to Xalkori of several ROS1ers I’ve met online, I expect the news will be positive.  Can’t wait to read it–I’ll probably hustle to the University of Washington Library and download it first chance I get.  Yes, besides being a science geek, I’m an INTENSE science geek.  One of those “complete response” lines on the waterfall plot will be ME!

The scanxiety for this visit was different than my previous visits to Denver. It’s been a very busy summer for me.  As I posted previously, before flying to Denver I attended the Stanford Medicine X conference in Palo Alto September 4-7.  I gave my speech on lung cancer stigma on the main stage Sunday morning, left the conference a couple of hours early to fly to Denver Sunday night, and had my clinical trial labs and scans Monday.  I was so focused on the conference and my speech that I barely noticed any scanxiety –it was difficult to distinguish from the intensity that precedes my speaking publicly.  The only real indication of any anxiety was my increasing inability to focus during the conference and three hours of lost sleep the first night in Palo Alto (although my husband might have a different perspective about my intensity in the days before I flew to Palo Alto).

A few other things were different about this clinic visit:

  • On the day of my visit, I spent an hour talking with the American Lung Association of Colorado’s office about LUNG FORCE.
  • A pleasant UCH oncology Fellow conducted my clinic visit. My primary oncologist Dr. Camidge came in to chat with us both for a few minutes afterwards–he knows I always have a list of questions for him. We talked about an exciting new clinical trial design at UCH for FGFR-positive NSCLC (more on that in a future post).
  • UCH had recently installed new software for their MRI machine, so the report of my brain MRI was not available at the time of my clinic visit. However, Dr. Camidge and the Fellow both reviewed the scan itself and reassured me it was normal.
  • After Dr. Camidge completed his clinic hours on Tuesday, he joined me, Dora (an online friend of mine who is also his lung cancer patient), and Dora’s husband Bill for a chat at a restaurant near UCH. How many world-renown lung cancer doctors do that? Well, yes, I did bribe him with a cup of coffee and a pastry. Here’s a selfie we took:

selfie with Camidge

Something else was also new to me after this clinic visit. I had a headache after I arrived home.  Since I’d just had a clean brain scan two days before, I knew the cause could not possibly be a brain met.  Somehow this reinforced the feeling that I was more a normal person than a cancer patient at this point.  Sometimes a headache is just a headache.

The brain MRI report appeared in our mail yesterday. It didn’t say much except “normal,” but a few terms were new to me.  I was Googling the new terms when an infolinks box popped up with this message:

“Searching for T2 hyperintensities in white matter? Try Kelley Blue Book!”

Maybe Kelley Blue Book can tell me how my hyperintensities affect the resale value of my brain.

My 2014 Stanford Medicine X Experience (Sep 4-7)

I’m in Palo Alto, CA for four days attending the Stanford Medicine X (#MedX) conference, which focuses on emerging health-care technology and patient-centered medicine. The first day was a pre-conference workshop on Partnering for Health in clinical trials.

I’m having a blast! It’s like a giant TweetUp of patient advocates, healthcare providers, and technology innovators. I’ve met a dozen people that I’d previously only known online. Several of them are patients who are healthcare bloggers and tweetchat moderators like me and have diseases different than mine (diabetes, arthritis, lupus, other cancers, etc.) My roommate is a delightful young pre-med student who happens to love chocolate, and who has had no sense of smell for as long as she can remember (which is fortuitous, considering one of my Xalkori side effects).

Presentations and panels address the evolving nature of healthcare, with a strong emphasis on patient involvement. Some topics:
–How to include the patient voice when designing clinical trials
–How do patients who are not tech savvy (“no smartphone patients”) obtain medical records and learn about their disease?
–Technology to assist those with disabilities
–New apps and devices for improving outcomes (e.g., a device that tracks when bedridden patients need to be turned to avoid bedsores)
–The value of relationships in promoting health
–Training medical students and doctors to incorporate empathy in patient care and ask the patient what is important to them
–Patients self-tracking their health data (e.g., diabetes blood levels and insulin doses)
–Which metrics to use when choosing a doctor, and where to find them, and new ways to gather the info

At least half the people in the audience are interacting with their smartphones, laptops and tablets during the event. I can see how all the online activity is extending the reach of the conference, which is also being streamed live (except when the server crashes from overwhelming demand). It is fascinating to watch the presentations and simultaneously read a very active #MedX Twitter stream that summarizes, critiques and expands on what is being said.

I’ve seen some cool vendor demos also, like 3D printing of medical models and devices:

IMG_6646.JPG

My speech is tomorrow (Sunday September 7) at 10:10 AM PDT. Hope you’ll be watching via Medicine X Global Access! If you miss it, it will be posted online eventually.

I fly to Denver Sunday evening for my eight-week scan on Monday. I must admit this conference is a great scanxiety distraction.

My Worst Speech EVER

Last night I gave the worst speech of my life.  Everything that could go wrong, did.

I misunderstood the start time, and arrived late to the venue. Many of the seats in the once-filled room were now empty. People were partying audibly in the hallway.  I walked out onto the empty stage and discovered the fly of my pants was open.  I turned around to zip it, and when I turned back, a large potted plant blocked me.  I stepped around the plant to start speaking, and immediately began stammering nonsense.  An audience member in the front row imitated me and laughed. I finally found my words, but they were somewhere in the middle of my talk– everything was out of sequence.  I couldn’t find my place in my notes. Another audience member began lecturing about what I was doing wrong, and I had to ask him to be quiet so I could continue.  As I spoke, people stood up and walked out.  When I finished, none of the few remaining attendees clapped or looked at me.  I walked out of the building to find people on the street commenting to each other about how bad my speech had been.

I completely failed to deliver an effective speech.  And …

The world did not end. Life continued.

Living with metastatic cancer gives one a different perspective about small things like failure.  I don’t want to waste precious time fretting over what hasn’t gone right in my life.

Failure won’t kill me. It just teaches me what to do better the next time.

Like not having spicy barbeque sauce on a snack before bed.  It gives me weird dreams.  I’d rather not have that dream again.*
*Added that last sentence about 5 hours after the original post — evidently people didn’t catch my hint that this was a dream.  Sorry I was too subtle.  I don’t often hear that adjective applied to me!

Speaking at 2014 Stanford Medicine X

I’m looking forward to attending the 2014 Stanford Medicine X Conference (#MedX on Twitter) as an ePatient Delegate September 5-7 on the campus of Stanford University.  The conference, now in its third year, is the leading patient-centered conference on emerging technology and medicine.

This conference will give me an opportunity to meet and interact with other epatients (engaged and empowered patients who participate in their medical care) as well as innovators who are providing the technologies that enable epatients to learn about their health conditions, track their health status, and share their experiences with others.  I hope this will teach me more about how to use social media to provide lung cancer patients with hope and useful information, raise awareness of our disease, and contribute to research and clinical trials.

I will be speaking on the MedX mainstage about “Making Lung Cancer Visible” on Sunday, September 7.  My speech will be in the Ignite format (5 minutes, 20 slides that automatically advance every 15 seconds), which will be a challenge for my chemobrain!  According to the 2014 MedX schedule,  my talk will be the second in a group of epatient talks that start at 10 AM Pacific Time Sunday 9/7; my talk should start around 10:10 AM.

If you’d like to watch my talk live, please sign up IN ADVANCE (FREE!) for the Stanford Medicine X Global Access Program.  This will allow you to watch all MedX events via livestreaming on the Internet.  If you’re unable to watch it live, my talk will eventually be made available on the MedX YouTube channel — I’ll post the link here when it becomes available.

Edit Sep 17, 2014:
Stanford Medicine X talk posted my talk on YouTube — see it here.

Finding My Voice

Tonight (July 31) at 7 PM Pacific Time I will be the first of six speakers sharing our cancer journeys at “Community Voices: Stories of Survival“. My talk titled “Finding My Voice” will tell the story of why and how I became a lung cancer patient advocate. The event will stream live on the Internet tonight, and will be available later as a podcast and video. Thanks to The Story Collider and the online community Smart Patients (who teamed to create this show in San Carlos, California) for inviting me to participate!

Speaking as a Patient at MedX

Just realized I have a Speaker Profile Page for the 2014 Stanford Medicine X conference. This is really going to happen! Only 69 days to go–I better start writing my speech. And maybe get a professional headshot.

Edited 7/2/2020 to add screen caps of MedX profile:

Sunshine, Baseball, and Video

This morning I awoke to learn I’d been on the news at 6:15 AM.  The local NBC affiliate, King 5, included excerpts from my interview yesterday in their coverage of the Lung Force Turquoise Takeover and art unveiling in Seattle. You can see the clip here. Wonder why I kept looking at the ceiling?

We had a gorgeously clear 80-degree day today in the Pacific Northwest–perfect for a ball game.  Fellow lung cancer patient Gwynne Cleveland (@GB2C on Twitter) and I worked the Lung Force table at a Seattle Mariners day game, recruiting walkers for the inaugural Lung Force Walk in Seattle on June 7.  Shirt sleeve weather in May is a rare treat around here, although the breeze on the shaded concourse drove us both into sweaters.

Back home, as I hear the birdsong in the fading sunlight and spectacular sunset, two questions pop into my mind:

Why do birds sing at dusk?

Is it the same reason lung cancer patients blog?

American Lung Association Unveils LUNG FORCE Initiative

On January 29, the launch event for the American Lung Association’s new national LUNG FORCE initiative occurred in Seattle.  As stated on the LUNG FORCE website, “LUNG FORCE is a new national movement led by the American Lung Association with a singular mission: to unite women to stand together against lung cancer and for lung health.” ALA chose to focus on women because market research indicated that was the best way to break the stigma of lung cancer and bring it into public awareness. ALA’s aim for LUNG FORCE is to raise money for lung cancer research, education and advocacy. They are extremely responsive to the patients’ voice and are genuinely interested in promoting the concept that ANYONE who has lungs can get lung cancer, and NO ONE deserves to die from it.

Seattle is the launch city for the first LUNG FORCE Walk. I’m on the Patient-Survivor-Family Cabinet of the ALA’s Mountain Pacific chapter in Seattle. This chapter also has a Medical Professionals Cabinet, among them oncologist Dr. Howard (Jack) West, Medical Director of Thoracic Oncology at Swedish Medical Center and Founder of cancerGRACE.org (who was unable to attend the kickoff due to horrendous traffic); Dr. David K. Madtes. Director of the Lung Cancer Early Detection & Prevention Clinic at Seattle Cancer Care Alliance (an NCCN facility); and Dr. Steven Kirtland, Medical Director of the Thoracic Oncology Program at Virginia Mason Medical Center (and, coincidentally, my pulmonologist). We also have a cabinet of women business leaders.

I’m thrilled that an established, large national public health organization has chosen to join the effort to eliminate the stigma of lung cancer, educate people about symptoms, champion early detection, and promote research funding. Although ALA has long had a strong anti-smoking program, they are acutely aware of the need to keep it separate from LUNG FORCE to avoid promoting further stigma. I’m hopeful ALA is the Big Dog that will tip the scales and finally bring lung cancer into the public’s awareness.

And yes, the munchies were yummy!

Thanks to Hello Robin, Cupcake Royale, Trader Joes, and st. clouds restaurant for donating refreshments, and glassbaby for donating the meeting space.


Patients and Doctors Who Spoke at Seattle LUNG FORCE Kickoff 29-Jan-2014. I’m second from the left; my pulmonologist Dr. Steven Kirtland is third from right.

This 17-minute video captures the presentations at the kickoff event. I was the last of three patients who spoke at the event.

My Orycon 2013 Science Panels

I’m going to Orycon 35, a science fiction convention held November 8-10, 2013, in Portland, Oregon. The programming folks have dreamed up some interesting science panels! I’m especially looking forward to the panel Jay Lake and I are doing on “Living with Late Stage Cancer,” which was very well received at the World Science Fiction Convention in San Antonio last August. If you’re attending Orycon, I hope you’ll attend one of my panels or find me in the halls (I’m not a night owl nowadays, so I’ll be scarce at parties).

The Science of Funding Science
Fri Nov 8 4:00pm-5:00pm (Alaska)
Are we missing out on gaining knowledge because of political correctness?

Living With Late Stage Cancer
Fri Nov 8 5:00pm-6:00pm (Alaska)
What it’s like to live from scan to scan, how we learn about different treatment options, coping when treatment fails, and answering questions from the audience.

Would you go to a doctor whose professors were witch doctors?
Sat Nov 9 10:00am-11:00am (Idaho)
What medicine has gotten right and wrong over the eons.

Do we all really need to know calculus?
Sat Nov 9 1:00pm-2:00pm (Alaska)
Is it really necessary for everyone to graduate from high school knowing physics? How much math do we really use on a daily basis?

I want to get my science on?
Sat Nov 9 4:00pm-5:00pm (Alaska)
Where does the lay person keep up with the latest developments

Ask Dr. Genius: Ad-Lib Answers to Audience Questions
Sat Nov 9 5:00pm-6:00pm (Alaska)
No, really, they’re real scientists, honest. Bring your science questions, and if they don’t have an answer they’ll make something up, and it might even be sort of right.

Cancer sucks-is there hope?
Sun Nov 10 11:00am-12:00pm (Alaska)
New insights into cancer provides glimmers of hope for victims and their families. How are new treatment options shaping up? How soon can we hope for a cure?

Midi-chlorians? Really?!
Sun Nov 10 1:00pm-2:00pm (Alaska)
Best and worst science in the movies.

My Worldcon Schedule

Over Labor Day weekend, I’ll be a program participant at LoneStarCon 3, the 71st Annual World Science Fiction Convention in San Antonio, Texas. I usually sit on hard science panels at conventions. Here’s my schedule for this Worldcon. Hope to see some of you there!

The Practice of Space Medicine
8/29 Thursday 15:00 – 16:00
Whether you’re suffering from a case of Andorian shingles or just a mild version of numb tongue, you can be sure that our panelists have a higher patient survival rate than Dr. McCoy. What really happens when you have the flu in space?

Scientific Literacy vs Human Knowledge
8/30 Friday 13:00 – 14:00
The entirety of human knowledge is growing constantly. How can we even decide what the baseline of scientific literacy should be? What’s the process by which the baseline changes?

The Future of Medicine
8/30 Friday 18:00 – 19:00
What ever happened to farmacology? Is the futue of medicine all about genetics? Our panelists will predict the future for you.

Can Machines be Conscious?
8/31 Saturday 13:00 – 14:00
Inventing a better Türing test: neuroscientists are coming up with new definitions of consciousness. They also seek to determine how to measure consciousness.

Using Philosophy to Analyse a National Health Service
8/31 Saturday 15:00 – 16:00
Health is important, but health systems are often criticized, sometimes with good reason. Perhaps philosophy is needed to make premises clearer? Who should be treated, how, and where? Is “more health for the money” valid, or should we consider quality? What are the technology challenges, like ICT? Can we treat more old people at home? Should the patient just be patient, or become a stakeholder?

Stroll with the Stars Sunday – Alamo edition
9/1 Sunday 09:00 – 10:00
The Sunday Stroll with the Stars will head towards the Alamo, a few short blocks away. It will be led by Alamo aficionado and LoneStarCon 3 Chair Randall Shepherd. Meet Randy in the lobby of the Marriott Rivercenter for his personal tour of this famous Texas garrison. Visiting the Alamo is free; note that you will not be able to take photos inside parts of the Alamo.

Cutting Edge Cancer Research
9/1 Sunday 13:00 – 14:00
A look at what is currently possible in the field in combating cancer.