May 11, 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.

May 09, 2008

Mother's Day: Minority and Mixed-Race Donors--Step Right Up!

I've asked Older Son, who is Japanese, to sign up for the National Marrow Donor Program as a Mother's Day gift for me.

I know from my own writing and from people I've known that it can be extra difficult for a person who is mixed race or a minority to find a good match for a transplant.

So I e-mailed Susan Hamre at the National Marrow Donor Program (NMDP) again, to get the latest info on this issue. Here's what she said:

Regarding the need for mixed race and minority people to register, the NMDP has made great strides, and the likelihood of finding a match has increased dramatically for patients from all racial and ethnic groups.

Nevertheless, because these traits are inherited, a patient's most successful match is with someone of the same heritage. The groups of individuals underrepresented on the Registry are American Indian or Alaska Native, Asian, Black or African American, Hispanic or Latino, and Native Hawaiian or other Pacific Islander, and there is still a great need for donors of diverse ethnicities and backgrounds.

@ Jeanne Sather 2008.

May 07, 2008

More on Mother's Day

I e-mailed a couple of questions to Susan Hamre of the National Marrow Donor Program (NMDP). Here is her reply:

In answer to your questions, there is always a cost to join the registry. This cost is for tissue typing, which is how a patient is matched to a life-saving donor. (The closer the match between the patient's tissue type and the donor's, the better for the patient.)

It costs $52 to test the tissue type of every new registry member. Knowing that the cost can be a barrier, we work with sponsors, search for grants, and ask for contributions from people year-round. This allows anyone to join the registry during the Thanks Mom campaign (May 5-19) without paying the cost for tissue typing (or until we reach our goal of 46,000 new registry members during the campaign).

One reason I'm so excited to be a part of the Thanks Mom campaign is because individuals who normally aren't able to donate because of cost can do so now. This campaign is all about helping others by becoming a donor and also by allowing more individuals the opportunity to more easily give the gift of becoming a donor.

Again, we are grateful for the financial donations of generous sponsors who allow the NMDP to make this kind of giving possible for so many more people.

I e-mailed her yet again to ask for more info about the need for minorities and people of mixed race to sign up for the registry--because I know that minority and mixed-race patients often have a very hard time finding a match.

I'll post her reply when it arrives.

Read my earlier post: What I Want for Mother's Day


May 04, 2008

What I Want for Mother's Day

May 11 is Mother's Day (I had to check my calendar for that one), and this is what I want:

No flowers (I have plenty in the yard). No chocolates (I'm trying to lose 20 pounds).

I want Older Son to register for the National Marrow Donor Program as a gift to me.

Not that I will ever have a stem cell or bone marrow transplant (transplants aren't generally used to treat breast cancer), but I know how badly we need to expand the pool of potential donors, especially minority and mixed race donors. And Older Son happens to be Asian (Japanese).

Younger Son, who is white, is off the hook this year, because he is only 17, so too young to register, I believe. I think the only time children are donors is for family members, typically siblings.

I didn't think of this all on my own. Last week I received an e-mail from Susan Hamre of the National Marrow Donor Program (NMDP).

Susan wanted to tell me about an effort called "Thanks, Mom."

She wrote, ... our hope is to bring 46,000 people to the national registry in just the two weeks surrounding Mother's Day. For thousands of patients living with diseases like leukemia, finding a match on the Registry is their only chance of long-term survival.

I have a couple of questions for Susan, which I am going to e-mail her:

1. Is it true that people who register for the NMDP have to pay a fee?

2. How much is the fee?

3. Do you think more people would register if there was no cost to potential donors?

Of course, if Older Son agrees to register, I'll pay the fees for him.

To learn more: www.marrow.org

See also:

More on Mother's Day

Mother's Day: Minority and Mixed-Race Donors--Step Right Up!


The photo is of Older Son at age 6. He is now a very handsome 23-year-old business student at the University of Washington, set to graduate this June.

@ Jeanne Sather 2008.

May 03, 2008

Talking to the Press

John e-mailed me a couple of weeks ago, on the day he did an interview with a reporter from his local paper.

Here's what John said:

I met with the member of the paper today. He was not a day over 23 years of age.

He was totally unprepared. He used a cell phone for a tape recorder. I ran that out twice. I really had to highlight this. He had NOT seen my blog. I told him to go there. This would really explain a lot that he was missing. I kept wanting to stress education and early detection, he kept wanting to know if I was going to die or not.

How did that make me feel? Why did I feel that way? MMMMMMMMM Not sure, we shall see how this goes I guess. I had to tell him to remove the cap off the lens of the camera in order for him to take my picture.

I know, he is green and we all have to start somewhere. And I am grateful to have been offered this opportunity, BUT, I just am not sure the story will pan out in the way I wanted it to. We shall see.

I was a mainstream journalist (reporter and editor) for something like 15 years before I started writing about cancer, and I think John is being generous in his reaction to this young reporter. There is no excuse for being unprepared for an interview.

Here's my reply to John's e-mail:

John--I think you should post this e-mail on your blog, just as is.

I'm also going to forward it to the young writers I mentor--good for them to see. Not that any of them would go to an interview unprepared. There's no excuse for that.

It's not uncommon for the writer to have a different agenda for the story than the subject has--but "When are you going to die?" is getting pretty crude. Although I've gotten that too.

John did write a post about the story after it came out and was full of errors.

See: Setting the Story Straight

I've done a lot of interviews with the press, and so far I guess I've been lucky. Most of the stories have come out OK. A few little errors here and there, but generally the point of view of the stories has been OK with me.

Go to the About page on this blog and scroll down to read interviews that I've done with the media and also stories I've written about cancer for a mainstream audience--in some cases rather different from the way I write on my blog.

I've been getting a fair number of requests for interviews, especially in the past year, and I try to accommodate them all, especially from journalism students--because I was a J School student once, and I remember how hard it was to get folks to agree to interviews for stories that probably would not be published (because they were class assignments).

A week or so ago, a student from Columbia U.'s journalism graduate school contacted me and asked if she could interview me. I told her my week was really jammed--that was the week that my friend was here from San Francisco, plus Debutaunt and her daughter (and the debu__sweetie and HIS daughters) were coming to dinner, and I had two stories due, other than my blog.

So she gave me the "I only need 15 minutes of your time" line (which I've used myself), and I agreed-- 9 a.m. on the Saturday that Debs and Co. were coming to dinner. My S.F. friend and I were going out for brunch with another friend at 10, so I had literally 15 minutes I could give this graduate student.

What happens? She doesn't call. I waited till 9:15, and then I turned off the phone. She called after that and she e-mailed, and said that she had had problems with her recording equipment. She asked if we could set up another time.

I was annoyed and not inclined to accommodate her a second time, so I e-mailed her back and said that. I also pointed out that she could have called me as scheduled at 9 to tell me she was having a problem with her recorder. I hate waiting by the phone.

Full disclosure: I have a master's degree in journalism from UC Berkeley, a school that has a fierce rivalry with the school at Columbia.

Do you have a story about talking to the press? Please add a comment below--we want to hear about it. And add a link to the interview, if possible. Thanks.

@ Jeanne Sather 2008.

March 25, 2008

Great 'My Turn' in Newsweek

The March 24, 2008 issue of Newsweek has a great "My Turn" piece about the power of the Web to help someone with cancer.

"My Turn" is written by Newsweek readers, and it's a feature I almost always read. (I've also pitched "My Turn" pieces unsuccessfully a couple of times over the years, but that's another post for another day.)

In "An Electronic Cure for Despair," Rich Thomas writes about the e-mails that raised his wife's spirits--and probably prolonged her life--when she was battling cancer, in the hospital, and in pain.

If you don't get the print edition of Newsweek, here's the link to the story online:

An Electronic Cure for Despair

March 11, 2008

Story in Today's Crosscut

I wrote the top-of-the-Web-site story on the Crosscut site today. Crosscut.com--"News of the Great Nearby"--is a Web site started by several people I know, most of them refugees (escapees?) from Seattle Weekly.

Crosscut has original content, and then introduces stories from pubs around the Pacific Northwest. I like it because it's a quick way to keep up with what's going on, news-wise.

This story is an update on my search for a Canadian husband. It's a summary of the lessons I've learned from that experience, which has been unsuccessful, so far. But now that I'm in remission, I'm going to start looking again.

Read: How to marry a Canadian

@ Jeanne Sather 2008.

March 10, 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

March 05, 2008

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.

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