Home » 2014 » August

Monthly Archives: August 2014

Relax, Recoup and Regroup

Posted on by | 6 Comments

Today is my day to relax, recoup and regroup.  Just for today.

Yesterday I pitched, hit, threw, and ran (a very short distance) in a relaxed, laughter-filled softball game at my 40th high school reunion in Tacoma’s Cheney Stadium.  Both during the game and the reunion dinner in the evening, I had a chance to visit with people who grew up with me.  I appreciated renewing and reinforcing friendships, especially since I likely will not be around for my 50th reunion.  As the “Faithful Scribe” of the Reunion and Softball Committees, it was a wonderful to see so many people enjoy the months of work that went into making these events happen.  I was also surprised (and pleased) to learn how many classmates have been following my lung cancer journey on my blog.  It was a terrific day!

My sister Karen and me with Rhubarb, mascot of Tacoma Rainiers Baseball in Cheney Stadium
My sister Karen and me with Rhubarb, mascot of Tacoma Rainiers Baseball in Cheney Stadium

Now that the reunion is over, I’ve hit a turning point in the summer.  The looming deadlines imposed by outside events and projects have been met.  In addition to helping plan my high school reunion, I have been up to my eyeballs in lung cancer patient advocacy projects over the past three months:  working on the first-ever LUNG FORCE walk, collaborating with a group of metastatic patients on changes in lung cancer treatment guidelines, attending the big ASCO clinical oncology meeting in Chicago, preparing and giving speeches at conferences and events, writing articles and guest blog posts, and generating panel proposals about lung cancer for upcoming medical conferences.  Somewhere in there, I wrote blog posts, contributed to #LCSM Chat activities, researched new lung cancer developments, and communicated online with others in the lung cancer community.  I’m reminded why I’ve been feeling stressed this summer!

So, just for today, I’m resting up from all that exercise and socializing at the reunion, as well as reviewing what I want to do next.  I still have a long list of projects that don’t have externally-imposed deadlines.  I don’t handle pressure as well as I did before cancer (not that I handled it particularly well before) and need to wind down a bit and set priorities before jumping back into action.

And I MUST jump back into action.  I feel a pressing need to complete family and advocacy tasks ASAP, while I am able.  Even though I’m feeling pretty good right now, I can’t forget that my cancer might recur at any time, and people—including my friends—are dying of this disease every day.

But for now, I’ll bask in the fact that I just wrote blog post #100 for Gray Connections.

Tomorrow hubby Gerry and I start cleaning out the garage for the first time in 22 years.  No stress there.

Pondering Resources for Affordable Healthcare

Posted on by | 2 Comments

I’ve been thinking about the US healthcare system thanks to a fascinating Facebook discussion with other Stanford Medicine X epatients.  Each of us are too familiar with the strengths and weaknesses of the US healthcare system and its mix of insurers: Medicare, employers, and private insurance companies.

My focus is this:  whatever healthcare system we decide to have in the US, we need to be able to pay for it.  The reality is that healthcare resources are not unlimited.

Whether or not a healthcare system is government run and/or devoted to serving the good of all people, the resources required to operate the healthcare system are driven by a free market.  Governments and nonprofits fund only a small percentage of healthcare research and development.  Healthcare providers still choose what type of work they want to do and where they want to live in order to enjoy life and perhaps support a family.  For-profit companies still choose when and how to develop and manufacture drugs and technology, which are required to provide treatment and services. The government can’t afford to fund and/or control all these resources completely (even if some think it should).

Even if healthcare were universally acknowledged (and it isn’t) to be a basic human right, any comprehensive healthcare system will still have to ration healthcare services such as time with providers, technology, and treatments.  As a metastatic cancer patient, I am acutely aware of the rising cost of cancer care.  The drug keeping me alive would cost about $10,000 per month if I weren’t getting it free in a clinical trial.  Even if we acknowledge that everyone deserves to receive the treatments they need, we simply can’t afford to treat everyone with leading edge medical care at those prices.

A good example of this quandary is the new drug Sovaldi, which offers a breakthrough and long-awaited cure for Hepatitis C.    More than 3.2 million people are chronically infected with hepatitis C virus in the US.  A cure with Sovaldi currently costs about $84,000 per person.  A little math shows curing all the US patients would cost around $270 billion–and the cure is not permanent (people can get reinfected with the virus). Having health insurance cover that $270 billion could break the healthcare system and put premiums out of reach for many, no matter whether the system is structured as private pay, single payer (government health system), or a mixture of the two. So who gets the treatment?

Other countries with single payer, government-funded health plans solve this problem by limiting services they cover.  For instance, the National Health Service in the UK will not pay for the lung cancer drug, crizotinib (approximately $10k/mo), even though the drug can give a small population of lung cancer patients years of quality time.  When the government must consider how to use its resources to provide the best care for the nation as a whole, they decided the cost to keep that small group of cancer patients alive for only a year or two is too high.  So people who can afford crizotinib in the UK pay privately, creating a two-tiered health system.

You can’t duck the issue by simply saying, “Get rid of the gatekeeper insurance companies.”  Because healthcare resources are limited, and provided by a market economy, SOMEONE or SOMETHING is going to be the gatekeeper.  Who should it be?  Insurance companies? Government?  Healthcare providers?  Medical societies? Pharmaceutical companies?  Companies that manufacture generic drugs?  Research institutions?  Individuals?

To me, the most important questions are these:

1. What guidelines should our healthcare system use to determine who gets healthcare, so that everyone is treated in the same fair and ethical manner?

2. Who gets to make and enforce those decisions?

You might want to learn more about these questions.  The next person who declares bankruptcy due to a health crisis such as a heart attack or metastatic cancer may be you.  Or your child.

My Worst Speech EVER

Posted on by | 16 Comments

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

Posted on by | 4 Comments

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.