The Assertive Cancer Patient

Support This Blog, Please

You may have noticed a "donate" button at the bottom of some posts on my blog.

A button that looks like this:

The button is there because, with two small exceptions, I have decided to keep The Assertive Cancer Patient ad-free. The exceptions are a link to Amazon whenever I mention a book, and a Netflix ad on my Cancer Movies pages.

There are any number of ways to put ads on a blog. It's simple and easy. I tried this for a week or two when I first put my blog up. I used the ad service provided by Typepad, which hosts my blog.

But--and this is a huge BUT--most of the ads that popped up on my blog were for Web sites, products, and services that I personally couldn't endorse. And I didn't want them on my blog. An awful lot of them fell into the quacks category.

Cancer patients are fairly easy targets for exploitation--because we're sick, because we're afraid, because we'd like a magic cure that came with no side effects ... I don't want the exploitation of any cancer patient to start with an ad on my blog.

So there are none.

But I still need to make some money from the blog, which takes the best hours and the best energy of my day.

The result? The donate button.

Thank you for any cash that you might be able to spare. I appreciate it more than you will ever know.

A special thanks to the cancer patients who have sent me donations, and then apologized for not being able to send more!

I know who my audience is, so I expected that if people were able to send a donation at all, it would be in the $10 to $20 range. Those $20 contributions are keeping me at the keyboard, blogging away.

If you want to read more about me, go to the About page.

A note about using PayPal: You can make a donation by clicking on the donate button and going through PayPal without setting up a PayPal account if you don't want one. There is an option to simply pay with a credit card.

@ Jeanne Sather 2008.

Debutaunt's Love Life

Not that I'm going to tell you anything that Debs hasn't posted to her own blog, but I met the debu__sweetie and his two daughters last weekend, in Seattle, and this new relationship has my total support. Not they need it: I haven't seen a happier couple since ... I don't know when.

Brief synopsis: Zoe, Debs' Wonder Child, started nudging her mom to start dating. So Debs got on eHarmony and met Tim, who happens to live in Renton, which is about half an hour south of Seattle, where I live.

Tim visited her in Texas, and then last week Debs and Zoe came up here to visit him and to meet his two daughters. And they all came to my house for dinner on Saturday. My friend who was visiting from San Francisco (old Tokyo friend, we go back 20 years) was there, and also Younger Son.

I did the easy dinner plan: Made a big salad, put out some chips and vegetables with hummus, and called for pizza.

Everyone seemed to enjoy it, but we had trouble getting Zoe and Tim's older daughter away from the kittens for long enough to eat!

The two of them played with and bottle-fed the kittens all evening, and named the two little females, who are now Zoe and Muffins, although I forget which kitten has which name--they look a lot alike. The kittens were exhausted after they left and slept for hours.

Now Debutaunt is planning on spending most of the summer up here with Tim, and she will definitely be here for the Cancer Bloggers Reunion in July. I have some work to do on that, so those of you who are coming--expect an e-mail soon.

And I am hoping that some of Debs and Tim's good fortune will rub off on me: I have a date with Car Guy on Sunday night. We haven't had The Talk yet, so I'm nervous about that ...

Go to Debutaunt's blog for Seattle photos: Debutaunt

@ Jeanne Sather 2008.

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.

One of Amorette's Babies Has Died

My dear friend and fellow cancer blogger (and bento artist) Amorette was about 18 weeks into her pregnancy with twin girls when she lost one of the babies.

Little Cécile was born on Sunday, April 13, after a premature delivery, Amorette writes on her blog. "She was too tiny to breathe on her own and died shortly after the cord was cut."

The funeral is today, and sadly Amorette cannot be there, because she is still in the hospital, fighting to save Cécile's identical twin sister, Madeleine. Her mother Pam is with her.

Please go to Amorette's blog to leave her a message, and keep that number 24 in mind--that's how many weeks old the baby needs to be to survive.

Go to Amorette's blog: Cécile

@ Jeanne Sather 2008.

Cancer Bloggers: More Catching Up

I've been slow to get around to all my favorite cancer blogs since the big trip, but here are some more updates.

Of course, the list of my favorite cancer blogs keeps growing, so now it takes more time to stay up with everyone, but that's a good thing.

John
One of the newest, and the only guy among my cancer blogger friends, is John, who's been having kind of a tough time (my perception--he sounds great) with oral cancer.

John had to have all his teeth pulled and dentures made before starting radiation therapy for his cancer.

He wrote a post thanking all his doctors:

Kudos to the Doctors

That's great to read. I get a lot of e-mail from people who have been treated very badly by doctors or other medical folks.

Dubutaunt
After kissing a lot of frogs (haven't we all?), Debs has met The One!

She writes: Had a wonderful visit with my sweetie, Tim, (yes, he is now officially the debu_sweetie) last week here in San Antonio. He was my eHarmony match. Yeah. I know. It's Zoe's fault. If there is a male version of me, it's Tim.

Best of all, he lives in SEATTLE, and Debs and the incredible Zoe are coming up to visit later this month. And they'll all be coming to dinner at my house, so I can check out the Debu__Sweetie. I plan to lure Zoe away from her mother (did I say I've always wanted a daughter?) with the litter of kittens I will be fostering. (Kittens arrive this evening.)

Actually, Debs has agreed that I can be an honorary auntie. So I guess I'll only get to keep Zoe for an afternoon.

Read all about it on her blog:

Thems Some Lofty Goals, Zkat

Amorette
Amorette, who is pregnant with twins, and who I want to adopt as my little sister (Do you notice a theme here--are these people becoming my family? I think so), had a scare this past week. Her waters broke, and she ended up in the hospital over the weekend.

She's home now, on strict bedrest--flat on her back, until she gets to 24 weeks, then she'll be in the hospital for the rest of the pregnancy. Babies' heartbeats are strong, and they are kicking away.

So I don't know how much she'll be able to blog over the next few weeks, but she said it was OK for me to write about this.

Send positive energy Amorette's way (She lives in Ohio, so in that direction, please). And the magic number is 24. She needs to carry those babies to 24 weeks, at least.

24-24-24-24-24-24-24-24-24-24-24-24-24-24-24-24

I did my positive-energy-support-thing by knitting two baby hats for the twins. I'm going to take a picture before I mail them off to Amorette, but I won't post it till she gets the hats, because I want her to be surprised. Well, OK, here's a photo of a detail of the hats.

Next challenge: baby socks! I've never knitted a sock before, and there's all this mystique about "turning the heel," but I have a pattern and I'm game. And the lady at the yarn store said she'd help me if I get stuck. They do a lot of that.

Amorette's blog

Oh, I ordered a book that has some of Amorette's bentos in it. It's called "Face Food." You can see it, and order a copy, on Amazon:

Face Food

While on bedrest, Amorette is hard at work on photos and text for another book that will feature some of her bento art. She made me one for my birthday:

Birthday Bento

Carver
Carver, who takes the most amazing photos, has been living in a drought for six months now. Every time I put up a post on my blog about my gardening efforts, she adds a comment about how she can't grow anything because she's not sure she'll be able to water.

So I was delighted to see that Carver's area finally got some rain. But--and this was amazing--the six days of rain only moved them up a category, from "extreme" to "severe." Can you spell climate change?

Go to her blog to read the whole story and to see some lovely photos of rain-drenched blossoms:

Rain at the End of the Downspout

Lisa
This is how Lisa introduces herself on her blog: I am an active, 30-something physician who has never really been sick before. I take care of critically ill babies, I am not supposed to be a patient.

How could I not want to be her friend?

Lisa wrote a great post about adding up all the miles she drove in order to get cancer care last year (she was doing her taxes, and miles driven for doctors' appts. can be deducted, at 20 cents/mile--what's the rate for business miles now? At least 35 cents/mile. Maybe 38. How is this fair?).

How many miles have you gone?

Meanwhile, slacker Jeanne hasn't even done her taxes yet. And I have an accountant. I'm getting my accountant to file for an extension for me, and I swear I'm going to do them the first week of May.

Laurie
Turns out, Laurie was/is part of a cancer cluster. A cancer cluster is a group of people who all get/got cancer at about the same time, and live or work near each other. Typically, they get the same cancer, I believe.

She writes: There is a group of seven women with whom I meet regularly. We are working on a writing project together. Each of us is smart, funny, strong, perceptive and unbelievably supportive of the others in the group.

We share a common set of values. We are all feminists, trade unionists and committed to working for social change. We have all had breast cancer. And we all worked in the same building.

Read the rest of the post:

the building

Dee
And, last but not least, Dee.

Dee and I met a few months ago (online, not in the real world yet) because we were both on Tykerb. She searched for info on Tykerb and found my blog. We've been e-mailing almost every day since, and she has set up a series of three speaking opportunities for me in Oregon in May.

In addition to Tykerb, Dee is also on xeloda (the most common combination), and some friends have written and recorded a song for Dee called "My Xeloda." Xeloda is a conventional chemo drug (Tykerb is a targeted therapy), so she has the typical chemo side effects.

My Xeloda

I'm going to stay with Dee when I go to Oregon to give my talks, and we've been keeping a list of all the things we want to talk about when I'm there--everything from men (of course) to sociolinguistics to kids to cancer.

The Circle Tightens
So of the cancer bloggers I know, I've now visited Jacqueline twice, and Debutaunt is going to visit me in Seattle later this month. Then I'll meet Dee in May, and most of the rest of the gang in July at the Cancer Bloggers Reunion.

I could say something really mushy here about what all these people mean to me, but I think it's obvious.

@ Jeanne Sather 2008

Cancer Bloggers: Catching Up

I haven't had time to stay current with all my cancer blogger friends while on last week's cross-country trip.

So that's my first priority, now that I'm home and have written most (but not all) of what I wanted to say about my train trip from Seattle to New York with my younger son.

First, an observation: I've noticed this before, but when I'm traveling, I seem to leave my cancer behind in Seattle. I don't think about it much, and I certainly don't worry about it. But I'm taking my Tykerb and other drugs every day, so it's not like I can really forget about cancer. But I do, somehow. And that's good. I need a break from cancer every now and then.

Back to the blogger friends:

Sara
Only Sara could have a brain tumor, which she did, and make it funny. That's all I'm going to say, except read about it in Sara's own words:

What They Knew, When They Knew It, and Why We Weren't Told Sooner

Also read about her True Love and what trust REALLY means when you have a brain tumor:

Artifacts of Trust

Sara's True Love, who sent me--and about 40 more of Sara's admirers--the e-mails you can read in the above post, deserves our highest honor. What should it be called, and what should it look like? Something like a badge of courage (because this wasn't easy for him, obviously) ... but also it needs to show his love for Sara ... and the way he "gets" her--this is so rare, especially in stressful, difficult times like when we are living with cancer.

I won't even tell you (much) about all the e-mails I get from people whose partners can't take it, and either bail or are just not supportive. And I don't have a partner--The primary reason for that, I think, is that I am living with a cancer that cannot be cured. I can live with that (mostly) but I haven't found a man who can. And I don't look very hard, because I'm busy dealing with my cancer, and my life.

But this post is not about me, it's about Sara, and her marvelous talent for living and loving.

Amorette
I was a little worried about Amorette, because she's pregnant and I hadn't heard from her for awhile, but it turns out she's been busy, getting into interesting situations involving Wal-Mart and emergency room elevators.

Also, read her marvelous rant about race and disability:

Wait, what?

I still haven't gotten my disability hang-tag for my car (which has been in the shop for the PAST THREE WEEKS, but who's counting?) because I can't quite face it--even though I've been legally disabled and collecting Social Security Disability for the past two years.

I could have applied for disability much sooner, but I was afraid I would go bankrupt and lose my house, so I kept on working--yes, those were fun days. I worked from bed, on a laptop, much of the time.

And a short update on her pregnancy. Yes, Amorette is pregnant, with twins. This is a woman who never does anything by halves. And she wasn't supposed to be able to get pregnant, either.

Heart problem explained...something I hadn't thought about

Teri
Teri, AKA The Cheeky Librarian, has created a blog which probably has more info about her rare form of cancer than any other blog or Web site in the world.

She's also survived a brain tumor, thank you very much, and has written about that.

Her latest post is about getting screened for adenoid cystic carcinoma, which is the kind of cancer she has. Or had. Teri, correct my verb tense, please.

MayoClinic's entry for Salivary Gland Cancer

And here's her entry about the pain clinic:

A visit to the pain clinic

Many of us live with chronic pain, and it's a bitch. Here's one of my posts about pain:

Questions I Hate: Pain

I am, at the moment, and knock wood, pain free. Next time I have a pain problem, I'm going to try needles--that's acupuncture. I think it would be better than the pain meds which messed up my tummy and my head.

Debutaunt
Just got off of Debs' blog. I feel really out of touch with her for some reason--her beautiful daughter has gone and turned 8 (!!!) while I wasn't looking. And it's soccer season for Zoe again already.

See:

Soccer is my LIFE!!!!!

Brave Sister

More to come.

@ Jeanne Sather 2008.

Where Did All Those Readers Come From?

The Typepad stat counter shows that my blog has gotten 911 page views in the past 24 hours.

My daily average is 518 page views, so where did all those readers come from?

Usually when I get a spike like this, it's because someone else has written a story about me with a link to my blog, or I have a story in another publication, like the recent piece I did for Crosscut. The day that story appeared, I had 601 page views, so just a small spike.

The last time I had more than 900 page views in one day was December 11. Back then, I was writing about surviving the holidays and recycling unneeded drugs through drug repositories.

I checked my stats and referrers, but there's no one referrer sending all these folks to my blog today.

It's a mystery.

@ Jeanne Sather 2008.

From the E-Mail Box

One of the really fun things about blogging is the mail that I get. I never got this kind of e-mail before I had cancer (BC)!

Potential Canadian Husband
I received an e-mail from a Canadian man who lives in Vancouver, B.C., suggesting himself as husband material. He didn't tell me much, just suggested that I look at his profile on facebook and e-mail him if I was interested.

Well, I'm not on facebook, and I don't want to have a profile on facebook (I have enough of an online presence as it is: 784 hits on Google, as of this morning). But I was curious about this guy, so last night I went to facebook and tried to set up a profile, and IT WOULDN'T LET ME ON!

Was it because of my year of birth? I know facebook is primarily for college students, but really!

There is a security window when you set up a new account, like the one people have to use when they post comments to my blog, but the security window wouldn't come up. So no luck. I haven't been able to look at this guy's profile.

I thought I might ask Younger Son (who IS on facebook, natch) to sign on and show me the profile, and YS was home last night, but then I thought: Do I want my son involved in my love life? Even this much?

The answer, of course, is no.

So I guess I will try facebook again later today, once I finish the story I'm working on, and if that doesn't work, I'll just have to e-mail Larry and ask him if he'd like to tell me about himself in e-mail. If that's too much trouble, I don't think he and I have much of a future together anyway.

Don't know what I'm talking about? Read about my search for a Canadian husband: Dating
Scroll down. The oldest posts are at the bottom.

An Invite
Then there's the invitation from a woman who works for a PR firm in New York City, asking me if I'd like to take part in a round-table discussion about cancer and careers.

The date, amazingly enough, is next Friday, when I will be in New York. It couldn't have worked out better, actually, because Younger Son and I will be arriving by Amtrak Thursday evening and staying with Jacqueline of Rebel1in8 fame in her loft in Brooklyn. I'm wondering if Jacq. is responsible for this invite--have to e-mail her to ask.

The event is put on by something called Cosmetic Executive Women (CEW) and sponsored by Roche, a drug company. (I'll be sure to wear lipstick, and I'll take notes if there are any weird drug company freebies on offer.)

But it sounds pretty substantive, according to the e-mail I received, which said, in part:

... addresses the unique challenges of cancer in the workplace and focuses on issues patients face when trying to balance both treatment and work.

The roundtable discussion offers an opportunity to present questions about challenges that your readers may experience, and we would love to have you or a representative from your blog attend. ...

Carlotta Jacobson, CEO and Founder of CEW, and board certified medical oncologist Dr. Ruth Oratz, Clinical Associate Professor of Medicine at New York University School of Medicine, will discuss the best ways to transition back to work and maintain a work life balance. ... We will also have a legal expert on hand to discuss national and local laws which protect and offer support to those working and living with cancer.

I've already accepted.

I was fired once while in cancer treatment, by a health and fitness Web site, no less, so this is a topic that is near to my heart. The settlement paid some of my cancer debt and gave me the down payment for my house.

Read: Blindsided by disease and life, she fights to survive

More Questions About Tykerb
I also received an e-mail from a woman who is in remission with Stage III breast cancer after treatment with Herceptin. She wants to get Tykerb, and her oncologist is telling her she isn't eligible.

I'm not going to argue with her doctor, but I sure admire her for looking into this, and I gave her contact information for Dr. Livingston in Tucson and also for the "Tykerb Cares" drug program. Awful name, isn't it? Trust drug company execs and marketing folks to come up with some real winners like this--I feel so warm and fuzzy knowing that my drug company cares about me! Never mind that they delayed shipping my Tykerb to me for THREE WHOLE WEEKS on one pretext or another.

Yes, that's steam coming out of my ears.

Not really, I've been amazingly mellow lately as my energy continues to climb. I don't need afternoon naps anymore, but I do shut off the phones and get into bed with a book and my dinner at about 6 p.m. or so.

"A book"? There are so many books piled around and on my bed that I'd be in danger if an earthquake of any magnitude hit Seattle during the night. The dogs, too, except they are smart enough to crawl under the bed.

@ Jeanne Sather 2008.

Support This Blog, Please

You may have noticed a "donate" button at the bottom of some posts on my blog.

A button that looks like this:

The button is there because, with two small exceptions, I have decided to keep The Assertive Cancer Patient ad-free. The exceptions are a link to Amazon whenever I mention a book, and a Netflix ad on my Cancer Movies pages.

There are any number of ways to put ads on a blog. It's simple and easy. I tried this for a week or two when I first put my blog up. I used the ad service provided by Typepad, which hosts my blog.

But--and this is a huge BUT--most of the ads that popped up on my blog were for Web sites, products, and services that I personally couldn't endorse. And I didn't want them on my blog. An awful lot of them fell into the quacks category.

Cancer patients are fairly easy targets for exploitation--because we're sick, because we're afraid, because we'd like a magic cure that came with no side effects ... I don't want the exploitation of any cancer patient to start with an ad on my blog.

So there are none.

But I still need to make some money from the blog, which takes the best hours and the best energy of my day.

The result? The donate button.

Thank you for any cash that you might be able to spare. I appreciate it more than you will ever know.

A special thanks to the cancer patients who have sent me donations, and then apologized for not being able to send more!

I know who my audience is, so I expected that if people were able to send a donation at all, it would be in the $10 to $20 range. Those $20 contributions are keeping me at the keyboard, blogging away.

If you want to read more about me, go to the About page.

A note about using PayPal: You can make a donation by clicking on the donate button and going through PayPal without setting up a PayPal account if you don't want one. There is an option to simply pay with a credit card.

@ Jeanne Sather 2008.

John Jumps In: Health and Happiness

John, the blogger from Indiana who has oral cancer, has joined in with a post on health and happiness.

John writes: When I climbed out of that poor, poor me stage and looked at all that I had, I never felt better nor happier than I did at that moment. I find myself very happy and healthy despite any cancer or other shortcoming.

Read John's post:

Find Your Health and Happiness Despite Cancer

Read the original health and happiness posts:

Cancer Bloggers Join Forces Again: Health and Happiness

OK, John, so what are your other shortcomings? Spill.

@ Jeanne Sather 2008.