The Assertive Cancer Patient

Oregon, Ho!

I'm starting with a tangent here, because all my brain seems to want to do today is take tangents ...

Oregon, Ho!
The phrase should be, "Westward, ho!", and then you should get a mental image of covered wagons setting out for the Oregon Territory. This would be post-Civil War America. Women WALKING alongside their wagons all the way from the Mississippi River to Oregon, abandoning treasured family possessions along the way to lighten the load.

That's the tangent my brain took when I sat down to write about my trip to Oregon next week.

Of course, I will be traveling south, not west. And Washington state was part of the Oregon Territory in those days, so the image doesn't really work there, either.

Oh, and I will be traveling by train, Amtrak, from Seattle to Albany, which is close to Corvallis, my destination.

If you've been reading my blog, you will know how much I love train travel. I'll have my trusty laptop (still minus the N key, haven't gotten that replaced), some knitting, and a couple of good books.

Read about my recent train journey with Younger Son (lots of photos): Home Again, Home Again

Why am I going to Oregon, you ask? Well, Dee, one of my blogger friends, is a professor at Corvallis, (Department of Anthropology, Oregon State University, Corvallis) and she set up a total of three speaking gigs for me, over three days. So I'm traveling down on Sunday, doing my presentations--plus hanging out with Dee. We haven't met face-to-face yet, but we've been e-mailing every day for months, ever since she found my blog by googling for "Tykerb," a cancer drug we both take.

See: Dee's Updates

Then back home by train on Thursday.

Monday
Corvallis Breast Cancer Support Group presents:

Jeanne Sather
Blogging 101: If I Can Blog, You Can Blog
Monday, May 19, 2008, 7 to 9 p.m.
Good Samaritan Regional Medical Center

Tuesday
The Assertive Cancer Patient Talks About:
The (High) Cost of Cancer Drugs, Drug Repositories, Her Search for a Canadian Husband, Boycotting October, Breast Cancer Barbie (and Friends), and More!
May 20, 2008, 3:30 to 5 p.m.
Waldo Hall 201A

Wednesday
The Department of Anthropology Tan Sacks Lecture Series presents:
"Blogging About Cancer"
(I'm going to talk about how our group of cancer bloggers formed, from the first contact from another blogger--Sara, I think--through our joint blogging efforts, to the Cancer Bloggers Reunion which I am hosting in Seattle this July.)
May 21, 2008, noon
Waldo Hall 240

These talks are sponsored by Oregon State University's:

Dept. of Anthropology

The Women's Center

and

the Women's Studies Program.

Thank you all, for hosting me.

A note about the mosaic
I made this mosaic last October, as a protest against the trivialization of breast cancer by companies such as Mars/M&Ms, which sells pink M&Ms every October.

The mosaic, made completely of M&Ms, with a few red vines for outlines, is titled: What I See in the Mirror Every Morning (And It Ain't Pretty)

The most difficult artistic challenge was to make sure as many of the M&Ms as possible were right side up, to give Mars Inc. which makes the pink M&Ms, the most exposure possible.

@ Jeanne Sather 2008.

Dying Without Health Insurance

A friend of mine at WashingtonCAN, a lobbying group, forwarded a report about the number of people without health insurance who die every year, nationally and here in Washington state--because they don't have health insurance.

Now, I'm not sure how they were able to determine that these people died because of lack of health insurance (in other words, that they wouldn't have died, regardless), but I'm willing to take their word that they have a formula for estimating this.

Here is a piece of the report:

The number of uninsured Americans reached 47 million in 2006, and it continues to rise. For many of the uninsured, the lack of health insurance has dire consequences. The uninsured face medical debt, often go without necessary care, and even die prematurely. In 2002, the Institute of Medicine released a groundbreaking report, "Care without Coverage: Too Little, Too Late," which estimated that, nationwide, 18,000 adults between the ages of 25 and 64 died in 2000 because they did not have health insurance. Subsequently, The Urban Institute estimated that at least 22,000 adults in the same age group died in 2006
because they did not have health insurance.

To find out what this means for people across the nation, Families USA has generated the first-ever state-level estimates of the number of deaths due to lack of health insurance. Our estimates are based on both the Institute of Medicine and The Urban Institute methodologies applied to state-level data.

In 2006, there were nearly 3,505,000 people between the ages of 25 and 64 living in Washington. Of those, 14.6 percent were uninsured. Uninsured Washingtonians are sicker and die sooner than their insured counterparts.

Families USA estimates that one working-age Washingtonian dies each day due to lack of health insurance (approximately 380 people in 2006).

What are 380 lives worth?

Read the report: Families USA Study

@ Jeanne Sather 2008.

A Report: Sick Folks Use the Web (Duh!)

A report from the California HealthCare Foundation says that 80 percent of consumers search the Internet for health-related information. (I'm betting it's higher for those newly diagnosed with cancer--anyone have any numbers?)

At the same time, the report says, "Relatively few patients tap the Internet to manage their care, including scheduling appointments with their doctors, filling prescriptions, or using ratings information to make choices about their doctors or hospitals." Of course, we'd be e-mailing our doctors if we could.

The report also didn't break out the numbers of people using bulletin boards, listservs, and so on.

Then it goes on to give some specifics about people in California.

Read the report:

Just Looking: Consumer Use of the Internet to Manage Care

@ Jeanne Sather 2008.

A Contest: Nominations Please, Drug Co. Profits

My good friend and fellow cancer blogger, The Cheeky Librarian, sent me this announcement, and it got me thinking that it's time for us to hold another contest.

(Debutaunt won the last one, and she gets to drive my Corvair when she's in Seattle this summer. Heck, she can take a road trip with the debu__sweetie in my car. To the beach, maybe? I also want us to go to the drive-in movies in the car, which is a convertible--can you say "Summer of '64"?)

Read: How LOW Will Komen GO?: The Winners

The contest is How Drug Cos. Spend Their (Obscene) Profits, and the categories are Good... Bad ... and Debatable.

So send in your entries for all categories. We'll come up with some prizes--I'm sure to score some drug company freebies when I'm at ASCO at the end of the month. See: ASCO if you don't know what I'm talking about.

Here's the announcement that Cheeky Librarian sent me. I assume she would enter it in the Good category, but I think it's Debatable, personally.

Entries Invited for Lilly Oncology on Canvas Art Competition
Deadline: June 30, 2008
The Lilly Oncology on Canvas: Expressions of a Cancer Journey Art Competition and Exhibition was developed by Eli Lilly and Company ( http://www.lilly.com/ ) in 2004 as a way to honor the journeys people embark upon when confronted with a cancer diagnosis. The 2008 competition invites U.S. and Puerto Rico residents who have been diagnosed with cancer, their health care providers, family members, friends, and caregivers to submit their cancer-inspired artwork.

Here's the link, if you want to enter:

http://fconline.foundationcenter.org/pnd/15012904/lillyoncology

@ Jeanne Sather 2008.

The Car Is Home!

After many trials and tribulations (including three weeks in the shop to get a new rag top, then a blown clutch on Yesler Avenue the very day I got it back, followed by an inflated repair bill from a mechanic who probably caused the clutch to go out--again--in the first place), my Corvair is finally back home where it belongs. And where I can drive it.

I was beginning to think that this car was just going to be a very expensive lawn ornament, one level up from the pink flamingos people used to have when I was a kid.

So long, cabs and rental cars. Those blew a hole in my budget.

The car was fixed by Car Guy, a friend of a friend. The friend tried to set us up, and then I called Car Guy for his help in deciding what to do with my car, and he took over and fixed it for me.

I have yet to see a bill, which is nice in one way (since I also haven't seen the vet bill yet for the last week of GB's life, lived in intensive care at my local vet), but also leaves some questions hanging. Like: Are we dating?

Also discovered that Car Guy is a perfectionist when it comes to making repairs. This is good. The car has never run so well. He tightened the steering, replaced a bunch of seals, did something to the brakes, and took the clutch and fly wheel apart and put them back together correctly--the other guy put an extra piece in there that would have torn my new clutch to shreads, if I understand Car Guy's explanation.

So, except for the ambiguity over the status of our relationship, I am one happy car owner. Going to call Car Guy tonight to thank him and to see if he wants to do something this weekend.

Note to self: Lose 20 pounds.

Blogging 101: If I Can Blog, You Can Blog

Corvallis Breast Cancer Support Group presents:

Jeanne Sather
Blogging 101: If I Can Blog, You Can Blog
Monday, May 19, 2008, 7 to 9 p.m.
Good Samaritan Regional Medical Center

For more information, contact Gerry Gibson at (541) 768-6005 or ggibson@samhealth.org.

The Web is the Wild West of publishing. The rules, standards, and conventions are still in flux.

For example, print journalism has a traditional separation between editorial content and the ad department. This is fuzzier on the Web. This is both good and bad.

What I like most about the Web, and blogging, is that the Web is so democratic. Anyone who has a computer and a couple of hundred dollars a year to pay for Web hosting can reach the entire world with his or her ideas. That is democratic in a way that conventional publishing and media (with all their gatekeepers) are not.

Also, blogs are cooler than Web sites right now.

Some background: Cancer patients are heavy users of the Web, for information, but also for connection and community. Cancer patients use Web sites, like Cancer Lifeline or the NCI Web site. There are also for-profit Web sites like WebMD.

Cancer Lifeline
http://www.cancerlifeline.org/

NCI
http://www.cancer.gov/

WebMD
http://www.webmd.com/

Cancer patients also use bulletin boards, typically attached to Web sites, like the one on the Young Survival Coalition Web site.

YSC bulletin board
http://www.youngsurvival.org/
http://www.youngsurvival.org/en/community/bulletin-board/

And they use listservs, which come through the Web in e-mail format. Typically, you must register to access a cancer listserv.

ACOR listservs
ACOR.org
http://www.listserv.net/scripts/wl.exe?XH=LISTSERV.ACOR.ORG

Examples
These examples are all cancer blogs.

Types:
1. Primarily for family and friends, Dee’s blog
Dee's Updates
http://www.deeupdates.blogspot.com/

2. To fight the isolation of having a rare type of cancer, Teri’s blog
The Cheeky Librarian
http://cheekylibrarian.blogspot.com/

3. Screaming at the universe. Sara's blog.
Moving Right Along
http://movingrightalong.typepad.com/moving_right_along/

4. My blog. The Assertive Cancer Patient: Living with cancer, and an attitude
http://www.assertivepatient.com/

I’ve been living with, and writing about, cancer for nine-plus years now. I think what I have to say is helpful to other people with cancer.

The blog also gives me a way to process what is happening to me personally. And sometimes just to rant about cancer. Because there is plenty to rant about.

Some examples:
Jeanne’s Diary
http://www.assertivepatient.com/jeannes_diary_2/index.html

Jeanne’s Soapboxes
http://www.assertivepatient.com/jeannes_soapboxes_1/index.html

Breast Cancer Barbie
http://www.assertivepatient.com/2006/10/breast_cancer_b_1.html

Boycott October campaign
http://www.assertivepatient.com/2007/09/boycott-october.html

“Cancer movie” reviews
http://www.assertivepatient.com/2007/03/reviews_cancer_.html

The most popular section of my blog is probably the Medical Mistakes section
http://www.assertivepatient.com/medical_mistakes_1/index.html

My goals for my blog:
* To be the most widely read cancer blog in the U.S.

* To influence public policy on issues such as health insurance and access to care.

* To change people’s thinking about health and illness. “As long as my kids are happy and healthy….” “As long as I have my health…”
Happiness
http://www.assertivepatient.com/2006/08/the_assertive_c_1.html

Go to: How to Put Up a Blog

This presentation was sponsored by Sue Savage, a local breast cancer survivor. Thank you, Sue. And also by Gerry Gibson, the breast cancer facilitator. Thank you, Gerry.

@ Jeanne Sather 2007, 2008. All rights reserved.

Cancer Bloggers Reunion: The Menu and More

I sent out an e-mail yesterday to my nearest and dearest, asking them to volunteer to cook breakfasts and dinners for the three-day Cancer Bloggers Reunion.

These are great friends, so I got a few answers right away.

Michele, a member of my writers' group, volunteered for dinner on the 23rd. She's making a "lentil salad, cheese, bread, green salad kind of thing."

My friend Laurie, writer, editor, and massage therapist, volunteered to make veggie lasagna and salad for dinner on the 24th, which is Thursday.

Warren, computer guy and former disc jockey, volunteered to cook dinner on whatever day no one else takes. He wrote, "Let's see what other offers you get and I will fill in the holes." No word yet on what he's planning to make, but this guy is a good cook. I'm betting on something Asian. I guess he gets the 25th.

Update from Warren: He is making us an Indian (from India) meal. Yum.

Jennifer, who is a member of my writers' group, and who has a story about her mother's garden on my blog, is going to provide breakfast on the 23rd. She's making fruit salad, a spinach quiche (or two), and some croissants. "OK, I'm not actually going to bake the croissants, but I will bring some," she wrote.

Read: My Mother's Garden

And Monica, personal trainer and travel buddy, will be out of town during this week (bummer, because I wanted her to meet all the cancer bloggers), but she's going to bake us some cookies. Yum. She also makes a mean cake ...

Debutaunt said it was OK to ask her sweetie, who lives just south of Seattle, to cook breakfast for us all one morning. We have to check this guy out, after all, before me let him marry our Debby. She said something about breakfast tacos, which sounds good to me.

So the menu is shaping up. I figure we can eat lunches out. The meals at my house will be vegetarian--dairy and eggs, but no meat or fish. Hope everyone's OK with that. And we should have some fresh produce from my garden ... I just bought some tomato and pepper plants yesterday. Also an eggplant, but the Western kind. I need some Asian eggplants, but haven't found any at the nurseries yet.

Activities
Lisa wants to do a hike while she's here. I'm thinking maybe the Saturday after the reunion, the 26th, if that works for folks. No need to hurry home on my account.

I think Jacqueline is planning on bringing samples of her Rebel1in8 jewelry and also clothes from the Rhea Belle (say it out loud) line, so that she can do a trunk show one afternoon or evening.

Reminder
Those of you who haven't gotten the answers to those questions I e-mailed to you back to me yet, please try to do that this week. Thanks. Don't answer any questions you don't want to ... or that aren't relevant to you.

@ Jeanne Sather 2008.
The name "Cancer Bloggers Reunion" is also copyright @ Jeanne Sather, 2007, 2008.

Cancer Bloggers Reunion: Panel Discussion

I had a meeting with a couple of folks at Cancer Lifeline last week, and we've set the date for the one public event during the First Annual Cancer Bloggers Reunion in July.

It will be a panel discussion at Cancer Lifeline on Friday, July 25, from 1 p.m. to 3 p.m.

Those of you who are planning to come, watch for an e-mail from me asking for topics for discussion both at the public panel discussion and during our three days together. I'll also want some info about you, your cancer, and your blog, both to share among ourselves and for Cancer Lifeline.

For more about Cancer Lifeline

For more about the Cancer Bloggers Reunion

(Click on the link and scroll down.)

@ Jeanne Sather 2008.

The Dog Has Died

Younger Son's Golden Retriever, GB, died Saturday.

I had to give YS the news yesterday, Mother's Day, when he got home from a weekend retreat sponsored by his school, Seattle University.

Older Son was home as well, but none of us felt like going out for dinner, so we postponed that until Wednesday.

We decided to have GB cremated, and we will take his ashes and scatter them at the beach next time we go. GB loved the beach more than any place else on earth.

The photo at the top is Younger Son, incognito, walking both dogs on Christmas Day. The lower photo is me at the beach with the dogs, two summers ago.

@ Jeanne Sather 2008.

More Stories on MedTrackAlert

I've been writing more stories for MedTrackAlert, and I'm really grateful for the work, especially now with my car repair bills (no, the Red Corvair isn't back home yet) and vet bills for poor GB (haven't seen a final bill yet--they are tactful about these things when a pet dies, but I'm guessing it's going to be up around $2,000).

Here are links to the latest three stories of mine that MedTrackAlert has published:

How to respond to hurtful comments

Get help with your bills from a specialist

Tips for sorting out medical bills

Here's the link to the first piece I wrote for them, back in April:

Story on MedTrackAlert: How to Talk to People With Cancer

MedTrackAlert
From their Web site:
MedTrackAlert is a consumer health information company dedicated to helping people better understand the benefits and risks of prescription medications.

We provide our members with important, time-sensitive news to keep them aware of new advances, adverse drug interactions, and potential dangers related to the medications they take. Our goal is to help you begin and maintain a fruitful collaboration with your doctors in the management of your health.

How It Works
We deliver news through our Web site and e-mail newsletters. Registration for our service is completely free and provides access to our full archive, health management and assessment tools, and free samples from drug manufacturers.

@ Jeanne Sather 2008.

Seattle Times Quotes My Blog

In a follow-up to my posts on e-mailing doctors, The Seattle Times has quoted my blog (and your comments) in a recent story.

Read the story: Group Heath trolling cyberspace to learn what patients think

Read more on my blog: E-Mail Your Doctor?

@ Jeanne Sather 2008.