The Assertive Cancer Patient

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.

A Doctor Who Wouldn't Listen: Malpractice at the UW/SCCA?

Last week I met with a Seattle woman named Sandy Garvin. This is her story.

BEFORE
In October of 2006, Sandy was 57 and had just retired after 28 years as a flight attendant for American Airlines. She was traveling, sailing five days a week, and enjoying the three-story house in Seattle's Wallingford neighborhood that she had bought in 2004.

"I was having a blast," Sandy says.

AFTER
Not quite two years later, Sandy's life has changed dramatically.

Sandy can no longer sail:
"I'm afraid to get on a boat," she says.

She can't travel by herself:
"I [have to] bother people now."

She can't even take care of herself and her home:
"I have to ask friends to do my grocery shopping, because I can't carry it upstairs," she says. She can't do housework, laundry, or yard work either, and can barely make it up the three flights of stairs that at one time made her home so attractive.

"I need an elevator," she says, but she can't afford one.

See also:

A Doctor Who Wouldn't Listen: What Happened?

A Doctor Who Wouldn't Listen: A 'Y' in the Road

A Doctor Who Wouldn't Listen: The Other Fork

A Doctor Who Wouldn't Listen: Finding Dr. Park

A Doctor Who Wouldn't Listen: A Personal Footnote

@ Jeanne Sather 2008.

Threats From Swedish

I opened a bill from Swedish Medical Center today, to read the following:

DELIQUENCY NOTICE
After repeated attempts to encourage you to pay your long overdue account with Swedish, this is still an outstanding balance. This letter is sent as our last attempt to assist you in resolving the balance(s) due. While we suggest that you take steps to settle this outstanding balance in full, the account is scheduled for a referral to a debt collector, ARSTRAT, if we do not receive payment within 15 days of this statement date. If you are disputing any charges on your bill, you must contact us immediately. Swedish does offer financial assistance to those who qualify, however, it must be requested by you and we are not showing any completed or approved application at this time. Bills from other health care providers (physicians, laboratories, etc.) that are billed separately from the hospital bill are NOT covered by this statement or Swedish financial assistance policies. In order to prevent debt collection, you must contact us immediately and make satisfactory arrangements for payment at 1-866-365-7357. Your bill is due in full at this time.

Whew! Who wrote that mouthful?

Do they think it's scarier if it's all in one long paragraph like that?

Let me state, for the record, that as far as I can tell--and I've checked--I do not owe Swedish any money. I've written to Swedish telling them this, but they ignore my letters, which from now on will be posted to my blog at the time I write and mail them, to keep a paper trail.

But, just for fun, let's take this threat line by line:

1. "After repeated attempts to encourage you to pay your long overdue account with Swedish, this is still an outstanding balance."

Oh, that must be what those phone calls--which did NOT identify the caller--were all about.

See:

Here's a New One: The Blind Billing Call

Another Letter to Swedish

We'll ignore the weird grammar in that first sentence: "...this is still an outstanding ..."

What about my letter of April 17, and previous letters? I never received a response.

Letter to Swedish

2. "This letter is sent as our last attempt to assist you in resolving the balance(s) due."

Do you promise?

3. "While we suggest that you take steps to settle this outstanding balance in full, the account is scheduled for a referral to a debt collector, ARSTRAT, if we do not receive payment within 15 days of this statement date."

Well, the bill was dated June 4, and I haven't heard from ARSTRAT yet. Maybe they're still reading my letter from last year, which they never responded to.

Letter to Collections Agency

4. "If you are disputing any charges on your bill, you must contact us immediately."

Been there, done that.

I've called (fairly useless), and written (also fairly useless), and not gotten a reply other than more computer-generated form letters and bills.

5. "Swedish does offer financial assistance to those who qualify, however, it must be requested by you and we are not showing any completed or approved application at this time."

Yes, and they call it "Charity Care" to embarrass us. Also, have you seen the forms and documentation that sick people are expected to provide in order to get Charity Care?

See also: more on charity care

6. "Bills from other health care providers (physicians, laboratories, etc.) that are billed separately from the hospital bill are NOT covered by this statement or Swedish financial assistance policies."

Yes, I know, thank you. But boy is it a surprise to new cancer patients when they get bills from doctors they haven't even met!

7. "In order to prevent debt collection, you must contact us immediately and make satisfactory arrangements for payment at 1-866-365-7357."

Please refer to my letter of April 17.

8. "Your bill is due in full at this time."

Well, no, it's not. The date of service on the bill was August 27, 2007. As I've told you before, I always meet my out-of-pocket max by the end of January every year, and after that time I cannot owe for any services provided by Swedish, which is a preferred provider on my insurance plan. We've had this conversation before.

Send me a written statement of what services I received on 8/27/07, and an explanation of why they weren't covered by my insurance company (WSHIP), and I will happily write you a check.

Note to readers: Having problems with a medical bill? Please feel free to adapt any of my letters that are useful. And please let me know what happens.

@ Jeanne Sather 2008.

Letter to Collections Agency

DATE: July 20, 2007
TO: ARSTRAT
FROM: Jeanne Sather
RE: Collection Notice

This letter is to inform you that the bill for $41.40 that Swedish Medical Center sent to your office for collections is an error.

I called my health insurance provider, WSHIP, and was told that it had not received a bill from Swedish for this amount with the date of service that is on the bill, 11/28/2006. Please check with WSHIP if you have any questions. I have tried without success to resolve the matter directly with Swedish.

Do not call me regarding this matter. Any contact by your office must be by mail.

@ Jeanne Sather 2008.

Letter to Swedish

TO: Swedish Medical Center, Patient Accounting Customer Service
FROM: Jeanne Sather
RE: Bill with date of service 8/27/07 (see attached)
DATE: April 17, 2008

I believe that the attached bill is in error.

I called my insurance company, WSHIP, yesterday, and spoke to a woman named Jackie. She told me that WSHIP has not received a claim from you for that date of service in this amount.

She said there was a claim from Dr. Eulau, my radiation oncologist, with that date of service, for $191, and that claim was paid.

The bill also does not say which doctor's services the bill is supposedly for, and I would like an explanation of the term "ongoing outpatient care"--are you saying that I had a doctor's appointment on that date?

In any case, feel free to call WSHIP for confirmation.

As far as I can tell, I do not owe this amount, and I will be sending a copy of this letter to the Better Business Bureau.

CC: Better Business Bureau

@ 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.

@ Jeanne Sather 2008.

Avastin and Tykerb in the News

I'm on both of these drugs to treat my metastatic breast cancer (also zometa), so I perked up when Teri, the Cheeky Librarian, send these headlines my way.

It's basically the old--"Is it worth the cost?" debate, which is always a question worth asking, but at the same time, the answer is going to be different if the patient who may not get access to the drug, is you, or your mother, or some abstract unnamed woman who your taxes are paying to support.

The stories on Avastin are saying that the drug is not all that effective, and it is certainly expensive, although maybe these headlines in the New York Times and elsewhere will persuade Genentech to cut the price, but one thing they may not be considering--most, if not all of us, get Avastin in combination with other drugs. And in combination it helps keep my cancer in check.

And I would fight tooth and nail to keep getting it, although, as I said, I do think it is too expensive.

Read: Avastin Headlines

On Tykerb, the same issue. The UK is apparently not going to allow Tykerb for treatment under the National Health because of the cost, and that is really too bad, because it does work. It also has some benefits that other cancer drugs do not--the most important of these: It crosses the blood/brain barrier and thus can prevent brain mets.

That's something I want to prevent, and one reason that I'm taking it.

However, right now, my Medicare Part D plan, which I joined as of July 1, is telling me that the monthly copay for Tykerb will be $1,600! (!!!!)

I haven't figured out how they can get away with this--since I signed up for a plan that has no copay and no deductible, and this is a covered drug. The person I talked to on the phone didn't know either, but she suggested that it was because I needed pre-approval for the drug, so I've asked my doctor's office to take care of that.

If that doesn't work, you'll hear more yelling and breaking of plates from over here in my corner of Seattle.

Oh, the plan is the Medco Medicare Prescription Plan Access.

Tykerb Headlines

@ 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

@ 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.

A Doctor Who Wouldn't Listen: A Personal Footnote

I don't use the word "malpractice" lightly.

I've been in cancer treatment for most of the past 10 years, both at SCCA and at other cancer centers in Seattle. And during that time, my doctors have made mistakes in my care.

See: Medical Mistakes—They Will Happen

I do not consider those mistakes to be malpractice, and I have never considered suing them.

But Sandy's story about a doctor who repeatedly ignored her reports of severe pain and her requests for further scans is beyond incredible. A court will decide if Dr. Park's actions did indeed constitute malpractice, which is why I've used the word with a question mark after it.

Tales like this one of doctors who refuse to listen to their patients make me cringe. In my opinion, this guy should not be practicing medicine. Because his treatment of Sandy goes beyond missing the tumor that had broken her left femur.

He also has no idea how to give a patient bad news. This is a hot button of mine, as regular readers of this blog well know, and it's something that is finally coming into the oncology mainstream, thanks to the efforts of Dr. Tony Back and others.

So, a counter-example, from Dr. Sangtae Park, as reported by Sandy Garvin.

How NOT to Give Bad News
When I was diagnosed with Renal Cell Carcinoma on October 30, 2006, Dr. Park scheduled the surgery to remove my right kidney and mass for November 6.

When I went back to have him examine the incisions, 10 days later, and asked him what the heck was that, he told me that he got it all, it was encapsulated, and not to worry for five years. "At five years, have a party, because between five and eight years, the tumors would come back with a vengeance, 15 to 20 of them." My body will not be able to handle it. I will die.

You might be wondering, WHERE did this guy go to medical school? Didn't they teach him anything?

Well, I checked, and Dr. Park went to the medical school at the University of California at San Francisco, which happens to be where Younger Son's father has his research lab. Younger Son is there right now, working in the lab for the summer.

Small world and all of that ...