The Assertive Cancer Patient

My One-Year Anniversary

Today is the one-year anniversary of The Assertive Cancer Patient.

On August 30, 2006, I launched my blog with three short posts:

This Blog Is NOT for You

The Assertive Cancer Patient: Feels Surprisingly Happy

The Assertive Cancer Patient: Is Not Necessarily a ‘Good Patient’

The blog has brought me some new friends: Teri, Sara, Gudrun, Liz, Lisa, Jessica, and Jacqueline. Tomorrow I'm flying to New York to spend the Labor Day weekend with Jacqueline and her husband.

How cool is that?

It's also been an incredible outlet for my rants, large and small, about everything from MIA doctors to Breast Cancer Barbie. Some fascinating conversations have grown out of those rants, as readers told their stories or debated cancer issues with me.

One thing I'm especially proud of is that my blog is a place where people can agree to disagree and still stay friends--no name-calling on this blog. And even if you LIKE pink ribbons, you can still be my friend.

Jeanne

@ Jeanne Sather 2007.

Meet Gigi, Debra's Service Dog

After Debra, who lives in San Francisco, read my posts about service dogs, she went to her doctor and got a prescription for a service animal.

She already had the dog, Gigi, a French bulldog who is about five months old.

After Debra talked to San Francisco Animal Care and Control, however, she sent me an e-mail asking for my help, because SFACC told her she had to have a special tag identifying her dog as a service animal before she could take it with her to various public places.

I’m not sure if there was a charge for the special tag, but Debra was caught in a Catch-22 because she was told she could not get the special service dog tag until her dog had a regular dog tag and rabies shots, and Gigi was (and still is) too young for these. Gigi needs to be six months old to have her rabies shot and get a dog license.

“I told them I needed to start training her,” Debra wrote, “and they said there was nothing they could do until then. … They made me feel that it was illegal to have my pet identified as a service dog until then.”

I e-mailed Debra back, and said:

Debra--I'm in Seattle, but the law about service dogs is a national one. Your dog needs a regular dog license and rabies shots, of course, just as she would if she were a pet, but nothing more. I suggest you print out the page from the ADA, link below, and carry it with you. If you have any problems or questions beyond that, I would contact the ADA directly for help.

Who told you that you have to have "special tags," by the way?

Let me know what happens.

Here's the link. The contact info for the ADA is at the bottom of the page:

http://www.ada.gov/svcanimb.htm

I also offered to make the phone call for Debra, since she sounded stressed out in her e-mails.

Debra sent me another e-mail explaining that she had just finished a series of cyberknife treatments and was burnt out from those treatments and also from fighting to get her health insurance to approve the treatments. "I did not sleep for two days, e-mailing anyone I could to help me ... I would so appreciate it if you would call," she wrote.

So today I got on the phone and called the ADA help line, at 800-514-0301.

An aside: the recording at this number is one of the longest I have ever heard. If you want to speak to a real person, just press "7" and skip all the directions for getting various guidelines faxed or mailed to you.

The person I spoke to said that ID tags are not required for service dogs under federal law. In addition, she said, “Under federal law, certification is not required.”

I asked if federal law trumps a local law, like San Francisco's, and she said yes.

So, as far as I can tell, Debra can take Gigi wherever she chooses in the city of San Francisco without a special city dog tag identifying her as a service animal. Debra probably will want to carry a copy of the Web page of ADA rules for service animals that clearly states that ID tags or certification are not required for service animals.

Just for fun, I plan to call S.F. Animal Care and Control and ask them why they are making things difficult for disabled people. I'll post the answer once I get one.

Read more:

Cancer Dog

A Dog By Prescription

Want a Service Dog of Your Very Own?

Animals at the Office

@ Jeanne Sather 2007.

CancerMatch.com?

Assertive, adventurous 52-year-old woman, living with incurable cancer, would like to meet a marriage-minded Canadian gent who is a cancer survivor or living with the disease.

Me: Writer, artist, teacher, well-known cancer blogger. Mother of two almost-grown sons (22 and 17). Vegetarian (but you don’t have to be). Loves animals (two large dogs and three cats), gardening, house projects. The beach. Books. Travel. Financially solvent except for absurdly expensive health insurance premiums and medical costs. Dislikes: Pink ribbons, chemotherapy, and unsolicited advice.

You: Age 45 to about 57. Canadian citizen living in Vancouver, B.C., or willing to relocate there. Cancer patient or survivor. Open-minded. Bit of a risk taker. Warm hearted but not clinging. Bald OK.

I’m not looking for a caretaker, and you shouldn’t be either. I am looking for a lover and new best friend.

Contact: jeanne.sather@gmail.com with photo.

CancerMatch.com? The Press Release

FOR IMMEDIATE RELEASE
August 30, 2007

For further information:
Jeanne Sather
Jeanne.sather@gmail.com


CancerMatch.com? 

Seattle Writer Living With Cancer Advertises for a Canadian Husband

SEATTLE—Aug. 30, 2007—Local blogger and cancer patient Jeanne Sather has posted a personal ad to her blog, The Assertive Cancer Patient, advertising for a Canadian husband.

“If I lived about 150 miles north, in Vancouver, B.C.,” Sather says in a recent post on www.assertivepatient.com, “I would still be financially solvent, instead of having the stress of always teetering on the edge of bankruptcy. I’ve been in cancer treatment for nine years now, and I’m tired of waiting for guaranteed national health care.

“If I married a Canadian, I would not longer have to worry about the high cost of cancer care.”

Sather’s treatment for metastatic breast cancer costs $300,000 a year. She pays about $800 a month for health insurance through the Washington state high risk pool, WSHIP, and has out-of-pocket medical expenses of $20,000 a year, including her insurance premiums.

The personal ad, which includes a photo of Sather at the wheel of her red 1964 Corvair convertible, says, in part:

“Assertive, adventurous 52-year-old woman, living with incurable cancer, would like to meet a marriage-minded Canadian gent who is a cancer survivor or living with the disease. … You: Age 45 to about 57. Canadian citizen living in Vancouver, B.C., or willing to relocate there. Cancer patient or survivor. Open-minded. Bit of a risk taker. Warm hearted but not clinging. Bald OK.”

As a journalist and an outspoken advocate for the cancer patient's point of view, Sather began blogging in September 2006. She has written about how to avoid medical mistakes, Breast Cancer Barbie, MIA doctors (who disappear when their patients are dying) and much more.

Sather began her career as a journalist, working for newspapers, magazines and wire services, including Newsweek in Tokyo, Reuters in Seattle, MSN (also in Seattle) and a number of other publications.

When she was diagnosed with breast cancer in 1998 at age 43, she started writing about cancer for the Web site OnHealth.com, which later fired her while in cancer treatment. That story made national headlines.

###

Choosing Your Doctors

I was talking with a friend the other day (when am I NOT talking with friends, but anyway), and something she said made me realize that most people don't realize that when you are in cancer treatment your doctors do not have to all be at the same cancer center.

Depending on what kind of cancer you have, and the treatment(s) you are contemplating, you could easily have three or four oncologists of different types, plus a talk therapist, physical therapist, massage therapist, and more.

When I was first diagnosed with breast cancer, for example, I sat down for a conference with a breast cancer surgeon, a medical oncologist, and a radiation oncologist. If I had been considering breast reconstruction, a plastic surgeon would have joined us.

As it turned out, I only needed the surgeon and the medical oncologist for my first round of treatment, which was a mastectomy followed by chemotherapy. But when my cancer returned a few months later (I had a local recurrence), I saw my medical oncologist and a radiation oncologist. That time I was treated with chemo and radiation.

I had chosen this team carefully, and they were all at the same hospital, the University of Washington Medical Center.

But now, I have a team of three doctors and they are not even all in the same state. The doctors who care for me are Dr. Livingston, who left Seattle for Tucson about a year ago. He is the doctor who had been my medical oncologist from the beginning, and I see him in Tucson twice a year and communicate with him by e-mail in between.

When Dr. L left, there was not a breast cancer oncologist at the UW or SCCA (a new facility that had opened during the time I was under Dr. L's care) I would trust my life to, so I jumped over to Swedish and saw a doctor there briefly before landing with Dr. Lee at Northwest Hospital, also in Seattle.

Dr. Lee is the doctor I see most often, as he is my new medical oncologist.

But last winter I needed radiation therapy again, and I chose Dr. Eulau at Swedish. He is still my radiation oncologist. And I'll be having treatment with him again over the next month or so, more on that later.

So I have two doctors in Seattle at two different cancer centers, and one doctor consulting from afar in Arizona. And it works seamlessly.

The biggest benefit is that I have the doctors I want. Doctors I trust. Doctors who seem to "get" me, and who like me.

My point is, anyone can do this. Cancer centers don't advertise it, for obvious reasons, but you are the patient, and you are free to choose the doctors you want and ask them to work together.

And they will. They usually know each other anyway, cancer medicine is a surprisingly small world.

@ Jeanne Sather 2007.

U.S.-Canada Cancer Patient Dating Service

This idea came to me, as so many good ideas often do, during a conversation with an intelligent, interesting woman. (Which is not to slam men. I occasionally have great ideas while talking with men as well.)

The woman is an expatriate American who is now a resident of Canada. In our conversation we ranged far and wide in cancer territory, and one subject that came up was the high cost of my health insurance and cancer care.

“Move to Canada,” she said, only half-joking.

From there the conversation segued into the idea of a dating service to match cancer patients north and south of the 49th parallel. We were joking, and I’m joking, sort of, when I put up the first ad (mine), but the whole idea makes a valid point:

If I lived about 150 miles north, in Vancouver, B.C., I would still be financially solvent, instead of having the stress of always teetering on the edge of bankruptcy. I also wouldn’t pay out almost $800 a month for health insurance that is slightly better than a barebones policy (and $15,000 to $20,000 annually in out-of-pocket medical costs). I’d call my policy a Honda Civic, as opposed to the Cadillac health insurance policies that public employees, including members of Congress, enjoy — at the taxpayers’ expense, I might add.

But I digress. The point is, if I married a Canadian, I would not longer have to worry about the high cost of cancer care. (See The (High) Cost of Cancer Treatment: I and The (High) Cost of Cancer Treatment: 2.

Thus, my personal ad:

Assertive, adventurous 52-year-old woman, living with incurable cancer, would like to meet a marriage-minded Canadian gent who is a cancer survivor or living with the disease.

Me: Writer, artist, teacher, well-known cancer blogger. Mother of two almost-grown sons (22 and 17). Vegetarian (but you don’t have to be). Loves animals (two large dogs and three cats), gardening, house projects. The beach. Books. Travel. Financially solvent except for absurdly expensive health insurance premiums and medical costs. Dislikes: Pink ribbons, chemotherapy, and unsolicited advice.

You: Age 45 to about 57. Canadian citizen living in Vancouver, B.C., or willing to relocate there. Cancer patient or survivor. Open-minded. Bit of a risk taker. Warm hearted but not clinging. Bald OK.

I’m not looking for a caretaker, and you shouldn’t be either. I am looking for a lover and new best friend.

Contact: jeanne.sather@gmail.com with photo.

A footnote: If I do marry a Canadian citizen, I expect the Canadian government to send George Bush, or whomever follows him into the Oval Office, a bill for the $300,000 annual cost of my cancer care.

Another footnote: If you'd like to join the U.S.-Canada Cancer Patient Dating Service, shoot me an e-mail: jeanne.sather@gmail.com.

@ Jeanne Sather 2007.

Cutting Medical Costs

Cancer center waiting rooms are a great source of old magazines.

Yesterday, while waiting for my blood draw, for lack of other reading material, I picked up a back issue of Money mag (November 2006).

Two articles caught my eye, one on how to avoid being the victim of a scam, and the other on saving money on medical bills, "50 Ways to Cut Your Health-Care Costs."

No. 4 is "Look for mistakes." That's the statistic I referred to yesterday, that as many as eight out of 10 medical bills contain errors, increasing the bill by an average of 25 percent. I have to say, in all the years I've lived with cancer and wrestled with medical bills, I've found a lot of errors and only one was in my favor.

So these aren't just random errors. Don't pay any bill until you are SURE that it is correct.

Most of these suggestions wouldn't work for cancer patients, who probably don't have the energy to implement them, and I can't really see too many of us taking suggestion No. 1, "Ask for a deal." I would have had a hard time negotiating the price of my mastectomy before surgery. At that time, money was the last thing on my mind.

However, No. 15, "Don't be denied," about appealing insurance co. rejections of any bills, is a good one, as is No. 25, "Go postal," about ordering prescription drugs by mail from your insurance plan. I started doing that when I went on disability almost two years ago now, and it saves me a lot of money on co-pays.

Consider No. 26, "Split 'em up." Pills cost about the same, no matter the dose (antidepressants like Paxil, for example). And some pills can safely be split in half, saving you half the cost or half the co-pay if you buy pills that are twice the dose you need. Don't do this one without checking with your doctor, as some pills cannot be safely split. And you need the doctor to write a prescription for the higher-dose pills.

And my favorite, No. 46, "Wash up." Simple, regular handwashing can keep you from getting sick ans save you money. This one is especially important for cancer patients, who may have low blood counts. Remember to change hand towels often (a wet towel harbors germs), and don't touch the door knob with your clean, still-wet hands on the way out of a public restroom. Half the people who use public restrooms don't wash properly afterwards. (I use a paper towel to open the door.)

And while you're at it, make sure the doctors and nurses around you are washing THEIR hands.

Yuck! Wash Those Hands!

Yuck! Wash Those Hands! Take 2

@ Jeanne Sather 2007.

Meet Prostate Cancer Ken

So, after my blood draw today, as part of my attempt to keep moving and fend off depression, I headed to Toys R Us to buy a Ken doll or two.

Well, I can't recommend that experience as a cure for depression--talk about conspicuous consumption: junky toys, tons of excess packaging, gender-stereotyping to the max in the toys themselves ... not to mention the whole race thing.

I was only able to find two different Ken dolls, one is "Beach Glam Ken," blond and blue-eyed, of course, and the other is "Ken the Groom Doll, every girl's dream," ("bride sold separately, subject to availability," according to the box. I didn't see her), who has brown hair and blue eyes.

There were no black or Asian Ken dolls. And, of course, no Hispanic Ken. Nor were there any clothes available for my Ken dolls--dozens of different Barbie dolls, and then dozens of separate outfits for Barbie, but that was it for poor Ken. Not even a powder-blue tux, which I was hoping for.

Ken looks a lot different from the dolls I remember from when I was a kid (Not that I owned one, my mom disliked Barbies). That Ken was pretty dorky looking, and I think he had molded hair. These have plastic hair, which may get shaved to transform them into Prostate Cancer Ken. Although prostate cancer is not usually treated with chemo, so maybe not. (Surgery or radiation. Chemo for metastatic disease.)

So I need to get to work, using my own ideas and some of the many suggestions that readers have posted to my blog, I think Ken should be dressed in a backless blue hospital gown, embroidered with little blue ribbons (the prostate cancer ribbon, bet you didn't know what color it was).

He'll wear a blue wrist band also, and come with a tiny copy of "Prostate Cancer for Dummies" (a real book, I know the author), a couple of itty-bitty Depends (adult diapers), and a blue teddy bear, for comfort. Maybe some plastic tubing and a urine bottle.

I'm still trying to figure out a tasteful way to indicate that Ken will not be having sex for quite awhile, post treatment, and I don't think Viagra helps in this situation, I need to double check.

Then I'll write some text to adorn the box-- sex-stereotyped cliches to correspond to the Breast Cancer Barbie box.

A footnote: Ken is cheap. I paid only about $6 for the Beach Glam doll, more for the groom. I paid something like $40 for Breast Cancer Barbie last year.

Read more:

Who Wants to Play?: Prostate Cancer Ken

Breast Cancer Barbie

@ Jeanne Sather 2007.

Medical Bills: Errors, Padded Bills, and General Craziness

As I've said before, I have trouble mustering both the energy and the focus to sort out medical billing problems. So I tend to let them go for a month or two, or longer, until I have a batch, and then I deal with them all at once on a day when I've got a head of steam up.

So on the Monday before I left for the beach, I gathered up a stack and went to the phone. I always make these calls from my landline, as I don't want these folks capturing my cell phone number--I never give that out to medical providers, only to my nearest and dearest.

Here's how it went:

Bill No. 1
This was a bill from Quest Diagnostics, a lab which runs my tumor marker tests now that I've switched doctors. The bill was for $102 and change. I talked to Tim and discovered that Quest didn't have my insurance info (don't ask, I didn't), which is why they kept billing me.

I gave Tim the info and now everyone is happy. That was an easy one.

Bill No. 2
This was from Via Radiology, for an MRI. Cost: $1,415. I talked to Michelle, who said that my account had just been sent to insurance a few days before I called, so not to worry about the bill.

That's two down.

Bill No. 3
This was an old one, for a mammogram on 3/20, cost $79. Provider: Seattle Radiologists.

I talked to Dana, or maybe it was Dara, can't read my notes now, and she had a completely wrong insurance company for me. Somebody on the provider side entered the wrong info into the system, apparently, and they were merrily billing the wrong insurance, month after month.

I gave Dana the correct insurance info., and, again, everyone was happy.

Bill No. 4: the Padded Bill
Bill No. 4 was a little more interesting. After I saw Dr. Livingston in Tucson in May, I received two bills. One was for Dr. L's services, and I promptly paid my share of that. (I owed a percentage of the bill because Dr. L is no longer part of WSHIP's network.)

But then I got a second bill, for the same visit, for $53 for "hospital charges."

Except that I saw Dr. L in the clinic as an outpatient, and didn't have any tests or anything else.

My insurance went ahead and paid $31.80 on this one, leaving me with a balance of $21.20. But I didn't see how I could possibly owe this.

So I called, and the person I talked to, Cindy, said that the billing system "automatically bills a facilities fee for patients seen at the cancer center." But, since I didn't have any lab work, she would remove the charge.

And what about all the people who don't question their bills?

Bill No. 5
And then there's my favorite, a bill that I've been fighting over for two years now, from the University of Washington Medical Center. I am satisfied that this bill has been a mistake from the beginning, but I was never able to sort it out. And then a couple of months ago, UWMC started billing me for it again, but now it shows that I made a payment of $25.81, which I certainly didn't do.

This means that the money I sent in to pay some other bill was applied to the disputed bill, and now there's one hanging out there that I thought I paid that will come back to haunt me ...

But in any case, when I called and talked to Jessica in the billing office, she said, "You shouldn't have received that bill. It was corrected as of 6/07. Don't worry about it."

OK. I won't.

Don't ask me. I'm just the patient.

However, something to keep in mind: As many as eight out of 10 hospital bills contain errors, increasing the tab by 25 percent, according to Money magazine.

Read more:

Paying Bills

Medical Billing Woes

Depressing Monday

I'm trying to fend off a depression that began yesterday ... the rain isn't helping, nor is the fact that I'm in pain.

Yesterday I had a pretty active morning: walked Connie, wrote some blog posts, did some inside house projects because of the rain, which kept me from painting outside as I had planned. Then the depression hit and I made some comfort food and retired to bed (clean sheets, yummy) with the book Victoria's Daughters.

Comfort Food

A digression. My friend Sara asked for "food porn," a term I love, and I've been slow to get back to her. (See Food Porn.)

Yesterday, when I could feel a depression coming, I headed to my backyard "garden in the sky" and harvested a few red-skinned potatoes (classic comfort food). I also snagged a zucchini and a red-skinned onion.

I wanted to make a vegetable curry with this, but the fridge yielded no jar of curry paste. No Japanese curry in the cupboard either, or curry powder on the spice rack (I threw away old or suspect spices a few months ago while cleaning the kitchen, and haven't replaced them--a serious oversight).

I had to make do with a packaged sauce meant for pad Thai.

Cooked the potatoes in the microwave for a few minutes. Then added them to the zucchini and onions in the wok. Once these were sizzling nicely, I added leftover rice from the fridge, and then at the end the pad Thai sauce. It wasn't curry, but it was yummy and plenty spicy, and I topped it with mango chutney for good measure.

Took this dish to bed with the book (and the dogs) and stayed there all night and till almost 10 this morning, reading about Queen Victoria and her five remarkable daughters. (She also had four sons, and ultimately 40 grandchildren, who all seemingly married each other.)

This family history makes World War I incredibly personal. It was, for these folks, essentially a family feud. Fascinating reading.

Back to the Depression
But this morning I am still depressed. It probably didn't help to read about the death of Vicky, Queen V's oldest daughter, of breast cancer at the turn of the (20th) century. Be warned that this is coming if you are thinking of reading the book.

So I'm gently trying to push myself out of this mood, which again isn't helped by rain and dark skies. I have much more energy on sunny days.

It's also not helped by pain in my groin. I think it's just a soft-tissue thing: a pulled muscle or ligament from kicking Connie's ball for him. But it hurts. And I have a couple of mets in that area, so I can't help but worry.

Also, after my blood test last week I got a call to come back to have the test repeated: My blood calcium was too high. So I'm going in for that this afternoon. The nurse was vague about what high blood calcium means, but I think I already know: disease progression.

I see my oncologist on Friday, and for once I am not in a hurry to get the news. I'm expecting that he will tell me my break from treatment needs to come to an end. Sigh. I'd like another month or two, and I may try to wrangle that if he doesn't think it's too dangerous.

So I'm going to walk Connie, who is whining, and then try to get myself together. I think I'll go buy a Ken doll or two on my way to the blood draw. (See Prostate Cancer Ken.)

Buy the book:

Victoria's Daughters

@ Jeanne Sather 2007.