The Assertive Cancer Patient

Thursday at the Cancer Bloggers Reunion

Well, where to start? People's plans have been changing, it seems almost hourly. Since I'm at the hub of this Cancer Blogger Reunion, I'm trying to keep up.

A couple of examples:

Debutaunt and her debu__sweetie broke up the other day, and she hasn't been able to make it up to Seattle from Renton, a suburb to the south. I miss her. We miss her. And we are sad for her. She's also not feeling well and needs to go to MD Anderson for a "tune up" as soon as she gets back to Texas.

Deanna realized a day or two ago that she wasn't going to be able to come up until today, because of her radiation therapy schedule. OK, that's fine. But then her doctor said she needs a break from radiation, so she could have come yesterday EXCEPT son Eddie was supposed to spend last night with his dad, so they are coming today--driving up from Oregon--but earlier than previously announced.

A reporter who is doing a story about all of us was going to interview us over dinner tonight and then come to the presentation tomorrow, but then her editor decided he (or she) wants the story for tomorrow morning's paper, so she is now interviewing us at 2 this afternoon. This is good, because more people will likely come to the presentation tomorrow as a result of seeing the story, but ...

Will Deanna get here in time?

Jeanne and Teri have a 1 p.m. meeting at Cancer Lifeline to go over technology--will they be home in time to greet the reporter, not to mention Deanna and Eddie?

Will the Corvair break down and leave us stranded?

You get the idea. I am doing my best to just roll with it all, and Teri is a great help in that, because she is so much fun to be with, and also so level-headed. Stories! The girl has stories!

And then, yesterday, or maybe the day before, Teri and I realized that Cancer Lifeline had not done anything to promote our panel discussion there on Friday. It wasn't on the CLL Web site, although Cancer Lifeline had written the post about the event and included a line saying "go to the CLL Web site to sign up for this event ..."

So Teri called Cancer Lifeline's main phone number yesterday to "find out about this blogging thing you're doing there on Friday," and was told by the person who answered the phone that she [Teri] was mistaken, there was no blogging event at CLL on Friday.

Then Teri "outed" herself and said, "Well, yes, there is, and I'm one of the speakers," or words to that effect, and the woman still seemed to think that Teri was mistaken--no bloggers here.

After that I sent off a few e-mails to CLL, asking about the lack of promotion, and also asking about the press release that was supposedly sent out, by the CLL director. I don't think this ever went out, so Teri and I spent some time yesterday promoting the event and putting up flyers in a few places, including dropping some off at my cancer center.

Some Things Are Working ...
So far, all the friends who agreed to cook meals for us (and deliver them to my house, and join us for the meal, of course) have come through like troopers. Thank you, Jennifer and Michele. Tonight Laurie makes lasagna, and tomorrow night Warren makes Indian food. Is someone bringing breakfast tomorrow? I've lost track.

The fridge is stuffed with yummy leftovers as a result of their cooking, which is great.

Yesterday, Wednesday, Teri and I went back to Uwajimaya in the International District and ate lunch in the food court there. I had Thai, Teri had Chinese.

Then we walked through the ID, stopping in at Kobo, a fantastic art gallery and shop that lives in what was once a Japanese-owned dime store. Bought a few small things there (but I really wanted the stirrup from a samurai's saddle, only $150. It's iron, I think, and heavy), and talked to a man who I think is one of the owners who showed us some fabulous realistic-looking insects made of paper by an artist who lives in Kyoto.

Bugs (insects) are a big deal in Japan, and he and I talked about fireflies and kabuto-mushi (horned beetles), which are kept as pets by Japanese kids. Older Son had one the summer he was 5.

After that, we continued our wander towards Pioneer Square, stopping in at a glass gallery and the Klondike Gold Rush Museum on our way to the Elliott Bay Book Co., one of the country's truly great bookstores.

From there, we took a cab home to find Michele waiting on the front porch with dinner. Great meal, great conversation.

@ Jeanne Sather 2008.

Teri Is Here!!!

A couple of days ago, Teri, The Cheeky Librarian, found the first e-mail she ever wrote to me, and resent it.

I was really touched to read it again (OK, I cried.)

Here it is:

From: Teresa Hartman
Date: Sun, Nov 26, 2006 at 1:19 PM
Subject: Thank you for your writing!
To: jeanne.sather@gmail.com

Ms. Sather, I really appreciate your writing, and am so glad to find someone else that protests the pink ribbon marketing... October is Medical Librarian month, too, and utilizing medical librarians would be much more useful to combating cancer fears and locating information on disease and cures than exploiting survivors. I am adding your blog address to my cancer treatment blog (I presume I have permission, so
please forgive my presumption!): http://cheekylibrarian.blogspot.com.

Take care, and I wish you the best. Please know that you have touched my life today, and I am better for it! -Teresa Hartman

That was almost two years ago, and we have been in regular communication ever since. And finally, yesterday, we met for the first time.

Teri arrived at SeaTac yesterday morning and Connie and I picked her up in the red Corvair, top down, although it was rather cold--but what's a convertible with the top up? Just a car.

We had lunch at Shun, my favorite Japanese restaurant (well, favorite in Seattle), and then did a quick tour that included the Asian grocery store Uwajimaya--it turns out Teri loves to do origami, so we shopped for origami paper, and she bought T-shirts with Japanese characters on them for her kids.

Then we drove down the waterfront and through downtown. Back home to find Older Son waiting for us. He joined us for dinner and then Teri and I took Connie for a walk in Ravenna Park. Luckily she is a dog lover, because Connie's manners were not the best--he was too excited to see her. As was I, of course.

Teri and I have been talking pretty much nonstop about cancer, and life, and doctors, and children, and being a librarian (Teri) ... I'll try to post at least some of it.

Oh, and Teri suggested that we record our presentation on Friday and put it up on YouTube. I'm working on that. Also missing the bloggers who wanted to come, like Sara and Jacqueline, but were unable to.

@ Jeanne Sather 2008.

"Why We Blog": At Cancer Lifeline, July 25

Cancer Lifeline presents:

“Why We Blog”—A Panel Discussion
Friday, July 25, 1:00 p.m. to 3 p.m.
Cancer Lifeline’s Dorothy S. O'Brien Center at Greenlake

Cancer Lifeline will host a panel of cancer bloggers from around the country on July 25 at Cancer Lifeline’s Dorothy S. O'Brien Center, located in the Greenlake neighborhood, at 6522 Fremont Avenue North.

The bloggers include two women living with metastatic breast cancer: Deanna Kingston, who is an associate professor of anthropology at Oregon State University in Corvallis and an Oregonian of King Island Inupiaq Eskimo descent. Her blog is: Dee’s Updates. Also, Seattle blogger Jeanne Sather, who organized this event; her blog is The Assertive Cancer Patient.

The third is Teresa Hartman, who has a very rare cancer, adenoid cystic carcinoma. She is an associate professor at the University of Nebraska Medical Center, where her primary area of research is health information literacy. She blogs as The Cheeky Librarian.

The fourth blogger is a leukemia survivor who is two years post-transplant, Debby Greer-Costello, of San Antonio, Texas. She blogs as Debutaunt.

The topic for the panel is “Why We Blog.” The discussion will include:

• Types of cancer blogs
• Reasons to blog when you have cancer
• What we gain: community, friends, answers to our questions
• Privacy and blogging
• Making money with a blog
• Men, women, cancer, sex, and blogging
• And more.

The presentation is free and open to the public. Go to Cancer Lifeline’s Web site to register: Cancer Lifeline.

Cancer Lifeline provides emotional support, classes and exercise programs in the Puget Sound Area. We serve all people living with cancer--patients, family members, and co-workers. All our programs and services are free of charge.

For more information visit our Web site, Cancer Lifeline.

"Why We Blog": At Cancer Lifeline, July 25

Cancer Lifeline presents:

“Why We Blog”—A Panel Discussion
Friday, July 25, 1:00 p.m. to 3 p.m.
Cancer Lifeline’s Dorothy S. O'Brien Center at Greenlake

Cancer Lifeline will host a panel of cancer bloggers from around the country on July 25 at Cancer Lifeline’s Dorothy S. O'Brien Center, located in the Greenlake neighborhood, at 6522 Fremont Avenue North.

The bloggers include two women living with metastatic breast cancer: Deanna Kingston, who is an associate professor of anthropology at Oregon State University in Corvallis and an Oregonian of King Island Inupiaq Eskimo descent. Her blog is: Dee’s Updates. Also, Seattle blogger Jeanne Sather, who organized this event; her blog is The Assertive Cancer Patient.

The third is Teresa Hartman, who has a very rare cancer, adenoid cystic carcinoma. She is an associate professor at the University of Nebraska Medical Center, where her primary area of research is health information literacy. She blogs as The Cheeky Librarian.

The fourth blogger is a leukemia survivor who is two years post-transplant, Debby Greer-Costello, of San Antonio, Texas. She blogs as Debutaunt.

The topic for the panel is “Why We Blog.” The discussion will include:

• Types of cancer blogs
• Reasons to blog when you have cancer
• What we gain: community, friends, answers to our questions
• Privacy and blogging
• Making money with a blog
• Men, women, cancer, sex, and blogging
• And more.

The presentation is free and open to the public. Go to Cancer Lifeline’s Web site to register: Cancer Lifeline.

Cancer Lifeline provides emotional support, classes and exercise programs in the Puget Sound Area. We serve all people living with cancer--patients, family members, and co-workers. All our programs and services are free of charge.

For more information visit our Web site, Cancer Lifeline.

The Business of Blogging

First, let me admit that I was never very good at managing the business side of being a freelance writer, which starts with keeping my desk and my files neat and orderly.

And these sloppy habits have carried over to my life as a cancer blogger, in part because I don't have a lot of energy and in part because I'm just sloppy by nature. I would rather stack things in piles and leave them for another day that deal with them.

(Then, once in a great while, I get in a cleaning mood and throw away everything in sight. I lost Younger Son's birth certificate this way. It went to the recycling with a load of paper files.)

Sigh.

But anyway, when I talk about the business of blogging, I mean things like making money with a blog, and the peripherals: business cards, buttons, and postcards.

I ordered some business cards when I first started my blog, almost two years ago, and I had them designed by a Seattle graphic artist named Kirstina Kling, who did a great job. She echoed the graphic design and colors of my blog and made me some snazzy looking cards.

But now I'm out, and I couldn't find the name of the company that had printed them (See what I mean?), so I e-mailed Kirsti and got that info and I've just called the printer to order another 250 cards.

Buttons from Busy Beaver
I also got on the Busy Beaver Web site this morning and ordered more Boycott October buttons. To date, I've given away about 200 of the pink 2007 buttons and 100 of the 2008 buttons (which I started giving away early, obviously).

So I need more. Hoping the buttons will get here by the time of the Cancer Bloggers Reunion (July 23-25), so that I can give them to the bloggers who are coming.

Postcards
I've been wanting to order postcards with my M&Ms mosaic design, and finally got around to doing that.

Uploaded the art this morning after a couple of e-mail exchanges with Jennifer at Modern Postcard. These cards should be in my hands within two weeks, so should have them by the time of the reunion as well.

After that, I'll use them for my own communications and also give them to people who send donations to my blog. I've been sending buttons, but it will be good to have the postcards as well.

Making Money
I have a donate button on my blog, and readers have been generous. I need to check my PayPal account to see how much I've made since January, when I put the button on, so that we can discuss this topic at the Cancer Bloggers Reunion.

I noticed that after I put up the button a number of other cancer bloggers did so as well. That's fine with me, of course, but I do wonder if we dilute each other's earnings.

Another way that I've made some money is that a couple of editors have found me through my blog and given me writing assignments. One of these was Veronica at MedTrackAlert, which was bought by Health Central just recently.

For more on the Cancer Bloggers Reunion, including profiles of the bloggers who are coming, go to this link and scroll down: Cancer Bloggers Reunion

@ Jeanne Sather 2008.

Cancer Bloggers Reunion: Debby Greer-Costello

Debby Greer-Costello lives in San Antonio, Texas, with her daughter Zoe, 8, but she is spending the summer with the Debu__sweetie, Tim, who lives in a Seattle suburb.

Debby is a two-year leukemia survivor (she had a transplant at M.D. Anderson in Texas) and blogs as Debutaunt.

"I'm a long time blogger (over five years)," she writes, "but have only blogged about my cancer/treatment since October 2005.

"Before I had cancer, I used to write about Internet dating weirdos, working, the commute from hell, and of course, Zoe. I'm glad now that I blog because it's really nice to have a reminder of dates and events."

Debby was an Air Force brat and moved all around the country until 1980 where the family landed in Texas. Debs has a B.A. in humanities with a major in English writing and a minor in art.

"When I was diagnosed I was an editor for an environmental remediation firm," she says. "I am divorced, but now am dating Tim, who lives in Seattle. I hope to move there once we are married because I absolutely fell in love with the city as well. After I finished my treatment, I moved to San Antonio and now live with my parents. I haven't been able to get back to work yet, as I take immunosuppresents and am susceptible to infections."

Her Cancer
Debby writes about her cancer:
"I went to the ER with a terrible headache in October 2005. Turns out the headache was a severe sinus infection, but was admitted for an unusually high white count. Normal counts should be below 11,000, and mine was 117,000. I knew that I most likely had leukemia; Acute Lymphoblastic Leukemia to be exact.

"They then immediately transferred me to M.D. Anderson in Houston and I started chemo three days later. I did five rounds of chemo between October and February 2006 and then had a stem cell transplant on February 27, 2006, with my brother James as my donor. I am now 27 months in complete remission, but still have some residual side effects from graft vs. host disease."

Life After Cancer
Debby and her daughter Zoe raise money for the Leukemia & Lymphoma Society at www.teamzoe.net.

[Skip that latte today and send Zoe the $3. Just a suggestion.]

Debby also volunteers with them and does the Light the Night walk each year. "This year we have teams in Houston, San Antonio, Austin, and Seattle," Debby says. "Zoe's goal is $30,000 this year. We have raised about $12,000 to date."

She also volunteers as a patient ambassador for the National Marrow Donor Program through the South Texas Blood and Tissue Center, writes articles about stem cell transplants, and does some public speaking as well. "Although it makes me nervous," she says.

"But my favorite thing is just to hang out with my daughter and play soccer mom."

Contest Winner
Debby was also the winner of the 2007 How LOW Will Komen GO? contest, and gets to drive my red Corvair while she is in Seattle.

Read Debutaunt's entry about the contest: Jingle Jugs

Go to: Debutaunt

Be sure to read this post if you are doing your end of life planning: Into the Hole ... A little humor at a funeral? Always a good idea.

For more on the Cancer Bloggers Reunion, including profiles of the other bloggers who are coming, go to this link and scroll down: Cancer Bloggers Reunion

@ Jeanne Sather 2008.

Cancer Bloggers Reunion: Deanna Kingston

Deanna Kingston is an associate professor of anthropology at Oregon State University in Corvallis and an Oregonian of King Island Inupiaq Eskimo descent. (Say that three times, quickly. Now say it with food in your mouth. Sorry, Dee.)

"My research interests revolve around the culture and history of the King Island Inupiaq Eskimos and more generally in folklore, ethnohistory, and natural resource issues, such as climate change and environmental toxins," Dee writes. "I generally try to advocate for Native American rights and also for the social sciences at the National Science Foundation."

She is also collecting boob jokes, which will result in an academic folklore journal article.

"I have an 8-year-old son with Asperger's Syndrome and I enjoy spending time with him and the rest of my immediate family," she says. "I enjoy recreational sports (volleyball, softball, tennis), playing cards, heading to the Oregon coast, and being outdoors."

Dee is in treatment for her second bout of breast cancer. She had a bilateral mastectomy and then had tissue expanders inserted and was in the process of getting "pumped up" when she was told in February that the cancer was still in the skin.

"I have since had a few nodules of skin metastases and also small (b-b sized) bone metastases throughout my large bones," she says. "I take Tykerb daily and Xeloda during the week. I have monthly Zoladex injections to shut down my ovary production, and by the time of this Reunion, I will have finished a second round of radiation treatments."

Dee uses acupunture and other techniques offered by traditional Chinese medicine to alleviate side effects.

Her first round of breast cancer occurred from 2002-2003; She was treated with a lumpectomy and sentinel node dissection, four cycles of adriamycin and cytoxan, 6 1/2 weeks of radiation, and then 4 1/2 years of tamoxifen.

Why She Blogs
At the suggestion of a friend, Dee says, she started her blog in order to communicate with family, friends, and colleagues about her treatment and how she is doing.

"I also use the blog to collect boob jokes," she writes, "because I believe humor helps with dealing with treatment. I am also willing to try other forms of medicine ('alternative') to fight the cancer--acupuncture and traditional Chinese medicine--and am interested in ayurvedic medicine, too.

"I generally blog about how I'm handling side effects and how these alternative forms of medicine are helping me. I sometimes attend the local support group, but I find that blogging suits me better at the moment."

One topic for discussion during the reunion that Dee suggested is the question of privacy: .

She asks, "Should you keep names of friends and family private?"

She also suggested: "How does blogging help you cope with cancer?"

While Dee is in Seattle, she says she wants to eat good food, go for walks on the Sound or elsewhere near the water, and go cruising in the Red Corvair--which, yes, is fixed! (Thanks, Car Guy!)

Dee also organized my speaking tour to Oregon in May, which is when I took the photo of her on the beach with Eddie, world's greatest 8-year-old. See: Oregon, Ho!

@ Jeanne Sather 2008.

Cancer Bloggers Reunion: Teresa Hartman

Teresa Hartman from Omaha, Nebraska, blogs as The Cheeky Librarian.

Teresa (Teri) has spent her career as a connector of information to the people that need it most at the time it is most needed. Having worked as a librarian in many types of libraries--military, college, museum--she became a medical librarian in 1992, experiencing first-hand the early days of health information delivered over the Internet.

Teri is an associate professor at the University of Nebraska Medical Center, where her primary area of research is health information literacy, having learned first-hand how valuable it is for anyone going through ANY medical care.

Teri was diagnosed with Adenoid Cystic Carcinoma of the left parotid (salivary gland in the cheek) before the 4th of July weekend in 2006.

This rare cancer occurs in secretory glands, such as salivary, breast, trachea, and lacrimal (tear duct). This slow, relentless cancer travels via nerves, and is known for returning years later in the initial site as well as mets in the lungs, brain, liver and bone.

It is possible to live for quite a while after tumors recur, even if they are in the liver. Treatment generally includes surgery of the tumor and radiation of the site, as there has been no chemotherapy proven effective on this slow-growing cancer. There are chemotherapy clinical trials currently being conducted.

There are no known causes for this cancer.

"The Cheeky Librarian is my effort to collect useful information in one spot on this type of cancer," Teri writes. "I link to the two support groups that exist, research literature and clinical trials searches, and other bloggers with this type of cancer, as I find them.

"I collect links to others' stories about going through this cancer, with the hope we can find each other, or memorialize those who have gone before us. I have also charted my experiences with radiation to the head/neck, which often poses unique difficulties for those going through such treatment. I am currently creating a consumer health information resource for use by one of the ACC research foundations. Other than that, I hope I will always be a supporter for others going through a cancer experience, as they have been for me."

Ninja Librarian: Who IS That Masked Woman?

Teri writes about her other life as the Ninja Librarian:

Beware the Ninja Librarian

The reason there is a Ninja Librarian

The Best Researcher I Know
I like to think that we journalists are good at doing research, but then I think of Teri--she's by far the best researcher I know. I always e-mail her when I have a question, whether it's about cancer or not, and she always comes through.

Go to Teri's blog: Cheeky Librarian

For more on the Cancer Bloggers Reunion, including profiles of the other bloggers who are coming, go to this link and scroll down: Cancer Bloggers Reunion

@ Jeanne Sather 2008.

Jacqueline's New Slideshow

Jacqueline, my good friend in Brooklyn, has a new slideshow to highlight her Rebel1in8 clothing line for one-breasted women (also no-breasted, and she will sell clothes to women who have both breasts ... she doesn't discriminate, but I'm getting off topic here).

Jacqueline has a couple of photos of me in the slideshow wearing a beautiful shirt she made for me. The slideshow also stars Laurie and another woman named Megan who I don't know.

Watch: Rebel1in8/Rhea Belle slideshow

New Earrings
Jacqueline is making me a new pair of earrings in the same style as those pictured here, except with amber beads in place of the turquoise. I wear the turquoise ones almost everyday, and when I was in New York with Younger Son a couple of months ago, Jacqueline restrung them for me, just to be safe.

Go to Laurie's blog: Not Just About Cancer

Read more on my blog about: Rebel Fashion

I haven't worn my prosthesis, Jabba, since I first visited Jacqueline in New York last fall. I don't miss the squishy little guy at all, except when I had my first date with Car Guy

I spent hours debating with myself--should I, or should I not, wear the prosthesis? I put it in. I took it out. By the time I left the house, without Jabba, my back was killing me from the tension and the fidgeting.

Car Guy never even noticed that he was out with a woman who had only one breast--not until I told him, anyway. What a guy!

Footnote: Jacqueline will be doing a trunk show of her clothing and jewelry when she is in Seattle for the Cancer Bloggers Reunion in late July. E-mail me if you would like to come: jeanne.sather@gmail.com

@ Jeanne Sather 2008.

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.