The Assertive Cancer Patient

A Report: The Wisdom of Patients

Teri, The Cheeky Librarian, sent me a link to a new report from the California HealthCare Foundation: The Wisdom of Patients: Health Care Meets Online Social Media.

Basically, the report confirms what those of us who have cancer and use the Web heavily--for blogging, online support groups, bulletin boards, listservs, and all the rest, already know: The Web, and the people we meet there, is a huge help to people managing chronic illnesses, like cancer.

Here's part of what it says:

Social media on the Internet are empowering, engaging, and educating health care consumers and providers. While consumers use social media -- including social networks, personal blogging, wikis, video-sharing, and other formats -- for emotional support, they also heavily rely on them to manage health conditions. ...

Using examples, this report describes how the Web is becoming a platform for convening people with shared concerns and creating health information that is more relevant to consumers. Social networks, ranging from MySpace to specific disease-oriented sites, are proliferating so rapidly that new services are already under development to help health consumers navigate through the networks.

The report details how innovative collaborations online are changing the way patients, providers, and researchers learn about therapeutic regimens and disease management. It examines the benefits and concerns regarding Health 2.0 and it also includes an extensive listing of health media resources.

To read more, or to download the full report:

The Wisdom of Patients: Health Care Meets Online Social Media

Over the past few days, I've been e-mailing back and forth with a man whose father-in-law has stage IV melanoma. I introduced him to Carver, who had stage III melanoma, and I've also been helping him to understand clinical trials and what the different phases mean.

He found my blog, and me, by doing a Web search.

@ Jeanne Sather 2008.

ASCO and a Better Mood

Well, my strategy seems to be working.

I finished writing my application for a grant to go to the ASCO conference in Chicago as a patient advocate, and sent that off, and that improved my bad mood by quite a bit.

As did all the supportive comments on my blog and in e-mails. Thank you all.

So now I need to move on and get the guest room clean, walk my dog, and go to the post office. Just the ordinary things of life.

ASCO
That's the American Society of Clinical Oncology, and some 30,000 people, mostly oncologists, I imagine, will be gathering for this meeting in Chicago in late May and early June. The downtown hotels are already sold out, so if I go I will have to stay at an airport hotel. Apparently there will be free shuttle service.

Here are some of the sessions that I plan to attend:

** Communicating Prognosis: How Oncologists Can Be More Effective
(I know Tony Back, the moderator for this one, and have made presentations with him several times in the past, including one to medical students at the University of Washington Medical Center. Baby doctors, I call them.)

** Integrating the Humanistic and Scientific Aspects of Patient Care: The Perspective of Seasoned Surgical, Medical, Pediatric, and Radiation Oncologists

** Access to Investigational Drugs Off-Protocol: What Do We Owe Patients?

** Conflicts of Interest in Oncology: Understanding the Problems and Finding Solutions

** Recognition and Management of Medical Errors in Oncology

** Erythropoiesis-Stimulating Agents Use and Overuse: How Do Oncologists Negotiate Conflicting Demands?

Great titles, huh? (NOT.)

I was looking for more on clinical trials, like how to get cancer patients to enroll in clinical trials, because I have some thoughts on that, and also some sessions on psychosocial issues, which I didn't find at all. I want to suggest that someone should do a psychosocial trial about stress over medical bills and patient outcomes.

I'll take the info I have on that along with me to the conference, because I might meet someone who is interested, and of course I will have my laptop so I can blog about all of this.

Go to the ASCO site to read about the conference: ASCO

Another E-mail From Anna

Anna wrote back just now, and she said something that I just have to post.

She was praising my blog, and she said, "You are not a competitive complainer."

In other words, she can tell me what's going on with her, and I don't have the need to top her with a worse cancer story about myself.

I'm posting this not because she is praising my blog, but because I love the words she used. I've never heard that expression (I think she invented it), and I love it. She was also referring to support groups, and how this sometimes happens.

We cancer patients don't need to compete with each other. We are all in this leaky lifeboat together.

@ Jeanne Sather 2008.

The Cheeky Libarian: The Truth About Cancer

Here's Teresa (The Cheeky Librarian) on the topic of truth and cancer:

The truth that I have learned:

There is a lot of money being made on this illness;

Those caring for the sick are way too relaxed, considering treatment and not cure is the expectation (not sure if that reads right--the health professionals are way too used to only treating, and have stopped considering cures);

People in power look the other way UNTIL they catch it, then they want everything to be dropped to seek a cure;

Manufacturers suck off of those good-hearted people who think they are helping finance a cure, when in reality there is not much curing being sought with the money;

Any 'lessons' that cancer is supposed to teach could be taught other ways and a whole lot cheaper in both money and emotion;

I am not 'brave' nor 'awesome' for enduring the treatment and its lifelong effects while trying drastic measures to save my own life;

My friends and family, who I knew were golden, turned out to really be platinum;

Cancer will not take away my tomorrows, but it has hit my dreams pretty hard.

I actually heard someone compare getting a cancer diagnosis--saying it is the same as being laid off. I could recover from a job loss EVER so much better than having cancer, folks.

True to my librarian gene, I searched 'truth cancer' in the literature (and on Google, but oh my gosh, don't do that if you are early in treatment!! Your post shows up in the early screens, though.), and located this oddity from 1925:

The Truth About Cancer (1925)

Kind of sad, really, that they thought they had it all whipped.

Thanks, Teresa (AKA, Teri).

Read more: The Truth About Cancer

Crawling Further Out of My Cave

So yesterday I picked up the red Corvair from the shop where I had left it to have a new top made. It was beautiful: the new top is pristine, of course, and the back window (which is plastic) is clear so I can see behind me when driving with the top up--always a good thing!

I was feeling better after this dreadful cold (The Cold That Ate Seattle), so I dressed in a new shirt that Jacqueline had sent me, and headed off to Pioneer Square in the Corvair to get a massage. On the way, I thought there was something funky with the gears, and made a mental note to check with my mechanic about it.

On the way up up up to the 11th floor of the parking garage, the sound of the Corvair's engine set off not fewer than THREE car alarms, which was pretty funny. I've never had a car alarm. Never had a car stolen, either, but I do have a club for the Corvair.

It was a gorgeous day, too. So, after my massage, when I was heading home to walk poor Connie, who had been shut up for something like four hours by then, I knew I was in trouble. The gears on the Corvair wouldn't catch, and it was smoking and smelly. I couldn't make it up the hill on Yesler Avenue, a busy busy street.

A couple of folks helped me push it out of the lane, and then I called AAA (luckily I had my card with me, I am not always so organized, or so fortunate). Then I waited. And waited. And waited.

Meanwhile, guys kept stopping to see if I needed help. That car--it is just so beautiful. Even when it won't go, it still LOOKS wonderful. Even the cop who stopped was sweet, and didn't write me a ticket. He said he'd come by again in a few minutes to make sure if I was OK.

Anyway, the guy from AAA finally showed up. He said he'd been sitting at a park with one of his buddies, just waiting for a call, and then he got two at once. So we towed the car to my mechanic's and left it there and I came home to walk my totally insane dog and talk a bit with Younger Son, who had come home to walk HIS dog.

This morning I find out that my mechanic doesn't want to work on the Corvair, so I have to take it elsewhere. He gave me a recommendation, but I think I'll go back to the guy who worked on it when I first bought it. So that is hanging over my head. And I am without wheels.

Plus I am so far behind on just everyday stuff, because of being sick. I need to:

Pay bills

Go to the bank

Go to Kinko's to send some faxes

Walk my dog

Clean house

You get the picture ... Just life.

@ Jeanne Sather 2008.

Crawling Out of My Cave ...

Well, after being sick for something like 10 days with The Cold That Ate Seattle, I am finally feeling better and getting back to blogging.

And my mail box is clogged with all sorts of interesting messages, some of which I want to share.

Canadian Husband?
A young Canadian man e-mailed me to say that he is willing to marry a young woman with cancer. He defines young as ages 20 to 25, which lets me out, but if you are looking for a Canadian husband, or know someone who is, and you fit the age criteria, send me an e-mail and I will put you in touch with Paul.

Cheeky Librarian is an Author
The Cheeky Librarian, who is a cancer blogger as well as a medical librarian and a library blogger, has coauthored a book chapter. She wrote Chapter 9 in Leadership in Interprofessional Health Education and Practice.

Go, Teri!

Troublemaker's Handbook
Teri, who always sends me interesting info, also send me info on a directory called The 2008 Brandweek Directory, which lists 19,000 "key personnel" at 7,000 brands--just what we need for the anti-pink-marketing campaign when October rolls around. I don't plan to buy it, I can use it at the library.

More to come, but I'm late for my massage. In the meantime, send me your Truth About Cancer

@ Jeanne Sather 2008.

I Need to Whine!

This doesn't qualify as a rant, I only rant about things that make me crazy, like the high cost of cancer drugs and the insanity of trying to sort out errors in my medical bills.

But I do need to whine, so here goes.

I've had a cold since Saturday, and I feel like crap. It's nothing serious, and it seems like half of Seattle is sick right now, so I certainly am not alone, but my throat hurts, my chest is full of gunk, and I'm running out of Kleenex.

I'm coughing, which hurts, and I have that exquisitely painful condition: Kleenex nostril--where the skin on my nose is red and tender from too much contact with tissues.

I didn't get up this morning till 10:30, which means I slept something like 13 or 14 hours. Obviously I needed it, because I was out cold. I've had to cancel things the past few days, including my volunteer stint at First Place, the school for homeless kids, and a coffee date with an old friend.

I hate having to do that.

To top it off, I'm behind on everything, so if you've been trying to contact me or I haven't done something I told you I would, that's the reason.

Oh, and I just turned down $500 from someone who wanted to put ads on my blog. That hurt, I was sorely tempted, but it didn't fit with my view of what I'm doing with this blog.

I'd really like to crawl back into bed, and I probably will do that in a couple of hours. Just baby myself for another day. Because I have an event tomorrow afternoon that I really don't want to miss: a get-together for freelance writers and editors sponsored by the Society of Professional Jouralists (SPJ) at REI downtown. I'm going with the writers in my small group writing workshop, and really looking forward to it.

The funny thing I've noticed about myself is that I don't whine (much) about my cancer like this--but a simple cold, now that's grounds for a whole lot of whining and bitching.

OK, I'm done.

@ Jeanne Sather 2008.

Dirt Under the Fingernails

The first crocuses are blooming, which as far as I am concerned means spring is here.

Time to start cleaning up the garden beds. Time to mulch, to keep the weeds from coming on stronger than the plants. Time to choose seeds to start inside.

Yesterday, as part of my effort to baby myself, I went to the Fred Meyer gardening department and bought four bags of bark mulch and some potted bulbs--daffodils and tulips. One pot of tulips, the purple ones, is inside against the pumpkin walls of my dining room (Have I said that I love color?). The pink tulips are outside in a pot next to the daffodils by the front steps--a "welcome to my house" greeting, if you will.

Outside, the bulbs I've planted over the eight years or so since I bought this house are just starting to bloom: the crocuses, a few here and there, and a tiny purple iris that I planted last year. But most of the daffodils and tulips have just barely poked their heads above the soil. Time to get out and ruthlessly murder slugs and snails, before they eat the tops off of everything.

I'm an organic gardener, so I just cut slugs in half with whatever tool I have in my hand at the moment, and I step on snails. Awful, I know. I also surround attractive plants with coffee grounds, the slugs don't like those. Good thing I drink a lot of coffee!

I dumped two bags of bark in the backyard in the areas the dogs use. That keeps them from tracking in mud from bare dirt, and also keeps down the doggy smell.

The other two bags are going to go on my beds out front, but I'll leave that job for tomorrow. Time to take a sauna, shower, clean my nails, and walk Connie.

@ Jeanne Sather 2008.

A New Breed of Cancer Patient: Living Longer, Shouting Louder

That's our new slogan, folks. It came to me as I was writing an e-mail to Teri, the Cheeky Librarian, AKA, Ninja Librarian.

Because we are the ones who are going to bring real, lasting change to cancer care. Not the folks who go through treatment once and then are done with it. Bless them, they barely have time to realize how awful it all is and they're out the other side.

But those of us whose lives have been changed by cancer, and who are living with this disease up close and personal every day, we are the ones who have time to think about it, and rant about it, and WE WILL BRING CHANGE.

Read a couple of first-class rants:

The hell I will

Depleted

@ Jeanne Sather 2008.

Babying Myself

I want to thank all the friends who have been cramming my e-mail box with messages of support during the past week. And also messages affirming (and is some cases, proving) that they are real people.

You've probably noticed that I haven't blogged as much this past week as I usually do: Normally, I put up four or five posts a day. But this is only my fifth post in the week since I found out that my bad-luck friend in Australia, "Barry," was a fraud.

I don't want to revisit that incident, you can read the post if you don't know what I'm talking about. But I do want to recognize the impact it had on me: In the short-term, profound. In the long-term: nada.

Because I've decided NOT to let one disturbed individual affect the way I live my life or the way I write my blog, which includes getting to know a huge number of people, online, and getting involved in their lives.

So, the Assertive Cancer Patient is back, doing business at the same old lemonade stand.

@ Jeanne Sather 2008.