The Assertive Cancer Patient

From the Democratic Underground

The folks on democraticunderground.com are discussing my search for a Canadian husband, as reported in the Seattle P-I.

My favorite post, so far, is this one:

While the snicker factor is obvious, this does bring up a veryimportant aspect of our whole health care "insurance" mess in this country. And that is, why are so many Americans dependent on the status of a romantic relationship for access to and affordability of health care?

I've been uninsured since last August (employer is small, can't afford insurance). I will not be insured until after my fiance and I are married on November 23 and I will then be eligible for coverage under his work policy that just started. If something major happens to me before that, I'm up shit creek. Millions of others depend on a spouse or significant other for coverage. Why should that even be remotely the case? That's bullshit, plain and simple.

She raises a good point: Why should so many of us be dependent on our romantic relationships for health insurance coverage?

I have a good friend who was divorced about a year ago, and she hasn't had health insurance since. She's working, but her employer doesn't provide coverage, and she can't afford it.

Of course, my search for a Canadian husband was intended to spark discussions like this one, so I'm delighted. Even if there was apparently an off-color joke on the board that was deleted before I got to see it.

Read the discussion.

At the P-I
There's an even livelier debate going on over at the P-I's bulletin board. Pretty polarized though. I don't think anyone is learning anything from this discussion. A whole lot of name-calling goin' on.

Read the P-I discussion.

@ Jeanne Sather 2007.

Want to Read About My Search for a Canadian Husband?

If you came to my blog from the Seattle P-I, and want to read my posts about my search for a Canadian husband, including the reaction of Canadian talk radio, go to Dating.

Read the P-I story:
Wanted: Husband with Canadian health care

Boycott October

Evolution:
1. Anger
2. Logic and Evidence
3. Humor

1. Anger
My first responses to pink ribbons, written back in 2003 and 2004, were visceral. See Gag Me With a Pink Ribbon.

This story, although written with the knowledge of, and indeed at the suggestion of, the marketing director at the Seattle Cancer Care Alliance, nearly lost me my freelance writing gig with SCCA.

The head of SCCA--NOT a fan of mine--was upset that I mentioned the organization in the story, even though what I said about my relationship with SCCA was accurate, and the doctor whose book I mentioned, Dr. Julie Gralow, was also upset about being mentioned in an anti-pink-ribbon story.

So much for the First Amendment. (I DID lose my freelance job with SCCA when I made a HIPAA complaint, but that's another story for another day.)

This is what I said about pink ribbons in a cover story I wrote for Seattle Weekly in 2003:

I hate them. I really do. I don't understand what they are for. Support and solidarity, something like that, but I'm not getting that from a little twist of pink metal pretending to be a ribbon.

Instead of pink ribbons, I'd rather have national health insurance or any health insurance plan that insures sick people. The way things are now, if you are young and healthy, you can get health insurance at a reasonable cost. If you are old or, God forbid, sick, forget it.

I stand by it. If you really want to help people like me, give us affordable, guaranteed health insurance. Don't buy products with pink ribbons on them and think you are helping. You're not.

See Soapbox No. 4: The Pink Ribbons

2. Logic and Evidence
Then, the years passed and pink ribbon merchandise continued to crowd store shelves every October, and companies offering these products took out full-page, four-color ads in women's magazines bragging about their efforts to help find a cure for breast cancer--never mind that the ads COST MORE THAN THE DONATION these companies were making. That's cause marketing. Also, see Chapter 1 in Samantha King's book, Pink Ribbons, Inc.

As you can see, I turned to using logic and evidence. I collected examples:

Pink ribboned bottled water (3 cent donation per $1 bottle). Pink M&Ms (50 cent donation per $5.39 bag). Clothing. Nail polish. Laundry soap ("clean for the cure"--please). Pink Web sites.

Pink gardening supplies: pink rubber clogs, pink flower pots, pink hoses, pink-handled tools, pink gardening gloves, and more, all in that sickly shade. "Garden for the Cure," says the label.

Pink soup. Pink Soup?

I have not purchased a can of Campbell's soup since last October. This October, I plan to send the folks at the company a letter telling them why.

I didn't like pink BEFORE it became the color of "breast cancer awareness," and now I loath it. (It's a particularly sickly shade of pink, too, a color I associate with girly, sexist expectations.)

Retailers right, left, and center are offering pink-themed merchandise, then donating a tiny share of the profits to cancer research. The reason the pink marketing campaign makes me so angry is that it encourages women to indulge in retail therapy while trivializing a very serious disease.

See
Gag Me With a Pink Ribbon

It's October--Time to Gag Me With Those Pink Ribbons

Pink Soup?

No More Campbell’s Soup for Me

3. Humor
And then came humor, although my sense of humor when it comes to pink ribbon merchandise is also heavily laced with anger and logic.

I think this is my best anti-pink-ribbon piece to date: Breast Cancer Barbie

Here's part of what I had to say about BC Barbie:

As a woman living with breast cancer (and minus one breast) who is forced to run a gauntlet of pink products every October, my question is this:

What does this beauty queen, fairy princess, DOLL in a pink formal gown say about me and my experience with breast cancer?

And the answer is: Nothing.

Nothing.

• This doll does not offer me hope.
• This doll certainly does not offer a positive image of a strong woman living with cancer.
• And the doll is not even a fund-raising effort that I can support.

I realize that passage isn't very funny. But the piece is, and the doll certainly is.

More humor, this one a spoof on the Race for the Cure, from The Onion: 6,000 Runners Fail To Discover Cure For Breast Cancer

Maybe humor will succeed where logic and evidence have, so far, failed.

This year, in a spirit of fair play, and fun, I plan to introduce Prostate Cancer Ken (why should women be the only ones to have their very own diseased doll?), Breast Cancer Ken (yes, men do get breast cancer, and it's a lonely, embarrassed road they travel), and Benign Girl (Breast Cancer Barbie's little sister, a la Skipper).

Watch this space for photos of all of the above in full, disease-specific regalia.

Also, art. My pink M&Ms mosaic is in the works.

Other Plans for October
I'll be writing letters to companies that market pink ribbon products--and expect to be rewarded for it with increased sales and profits. I'll post those letters on my blog for those of you who want to copy them.

I'll also be offering suggestions for ways, other than retail therapy, to help women with breast cancer. Meanwhile, DON'T "shop for the cure." It's a lie.

Note: The Rules of Engagement
Finally, let me say that anyone--except for people trying to sell something, or promote their own Web sites or blogs--is welcome to voice an opinion on my blog. However, name-calling is not allowed. Please see the comments section on my post about the Hallmark cancer cards for a good example of how to respectfully agree to disagree.

Support this blog:

@ Jeanne Sather 2007.

Soapbox No. 4: The Pink Ribbons

This soapbox was part of a longer story I wrote for Seattle Weekly in 2003, Running With Fear: Confessions of a Breast Cancer Poster Child

I hate them. I really do. I don't understand what they are for?support and solidarity, something like that, but I'm not getting that from a little twist of pink metal pretending to be a ribbon.

Instead of pink ribbons, I'd rather have national health insurance or any health insurance plan that insures sick people. The way things are now, if you are young and healthy, you can get health insurance at a reasonable cost. If you are old or, God forbid, sick, forget it.

If you want to support people with cancer, forget the ribbon and lobby for national health care. Or for a state health insurance plan that is open to everyone, rich and poor, sick and well. Olympia is helping to balance the budget by taking health insurance away from 60,000 of the working poor in our state.

Will this save money? Please. All the research has been done: A person without health insurance will wait until she gets really sick and then go to the emergency room at Harborview, which cannot turn her away. Then Harborview will write off the bill, which probably equals one year of health insurance premiums, if not more.

Who makes up the difference when Harborview writes off a bill? You and me, the taxpayers.

Support this blog:

@ Jeanne Sather 2007.

The Buttons Are Coming

If you've e-mailed me asking for a Boycott October button and are wondering where it is, check the mail in a few days.

I just packed up buttons ready for mailing tomorrow for Seana, Pat, Karen, Jen, Katie, and Beth.

If you haven't received your button and you're not on that list, please e-mail me again with your mailing address and I will very happily send you a button. jeanne.sather@gmail.com

Jeanne

A Death in the Family

I just got a phone call from my aunt, telling me that my brother, Eric, has died.

Eric Sather, 54, dead of colon cancer.

Right now, I don't feel much. A big blank.

Eric's death was expected. He was diagnosed with metastatic colon cancer about two years ago. He lived in Alaska, but was back and forth to Seattle for surgery and treatment.

I haven't written about my brother on my blog before because we were pretty much estranged for the past 10 years or more. He did e-mail me, along with my sisters and cousins, during the time he was in treatment, but I didn't see him.

This was one of those topics that I had decided NOT to blog about. For good reason.

But now, my big brother, my only brother, is dead. And it's raining in Seattle.

Let's Play: What Does a Lighthouse Mean to You?

I was just sitting down to write this post when my good friend Pat called. I was so glad she called, because, as you'll know if you read today's other post on "pain," I'm having a bad day.

More than a bad day, I've had a bad week.

Anyway, Pat and I talked for more than an hour (thank you, Cingular, for those free weekend minutes on the cell), and she let me rant for awhile, and then she provided some much-needed propping up for a couple of difficult decisions that I have made but am wavering on, and THEN I got to ask her the question that I'm going to ask all of you in this post:

What does a lighthouse mean to you?

Or, if you'd rather:

What does a lighthouse symbolize?

I'm asking because for the past three weeks I've been looking at the cover of a book I picked up on one of my visits to my radiation oncologist. It's from the National Cancer Institute, and the title is "Radiation Therapy and You." The cover art is a painting of a lighthouse standing high on some rocks, with a beam of light shining out over the sea.

And it's been bugging me for as long as I've had it. (I did read it, but that's another post for another day.)

So, please add your ideas as a comment, or send them to me in an e-mail.

Here are Pat's:

"A lighthouse is protection from running into danger ....it's a Christian thing. There's a lighthouse mission. Also, reaching out."

@ Jeanne Sather 2007.

When the Pain Meds Are (Almost) Worse Than the Pain

Let me say this, first of all: Pain is exhausting. Living with constant pain can sour the sweetest person.

I've been debating this question for about a week now--which is worse, the pain from mets (tumors) in my pelvis and upper leg, or the upset stomach, nausea, and constipation caused by the pain meds.

First, nausea: Last Saturday, while in Vancouver to meet JS, I nearly threw up on the street (chichi Robson Street, if you know Vancouver) as we were walking to a crepe shop. This nausea was the result of taking pain meds on an empty stomach. Not how I had wanted our first date to go.

Thursday night, I came home from a presentation to a Cancer Lifeline support group, ate some fried rice that Older Son had left for me, and promptly threw up in the bathroom sink. Argh. I ate vanilla ice cream instead, and told Older Son the rice was delicious when he asked.

Back to pain: As of last night, I decided the side effects were worse, so I stopped taking my pain meds, oxycodone and naproxen. But this morning, after limping while walking my dog for an hour, and feeling stabbing pain with every step, I'm not so sure.

But let's back up here and fill in some gaps.

The Beginning of Pain
I think the pain started with my first round of chemo, which was almost nine years ago now. My first chemo drug was doxorubicin, which I received weekly for 12 weeks back in 1998-99, after my mastectomy. (See Jeanne's Diary, Chapter 1)

One of the side effects of doxorubicin is aches and pains in the joints and bones. This never entirely went away.

Then, when I had a local recurrence in 1999, I had radiation and more chemo, this time with Taxol. I believe that Taxol also causes this aching in the bones and joints, as well as numb hands and feet.

The numbness gradually went away, the pain never did.

And then of course when my cancer metastasized to my bones, almost six years ago, I had pain. Big Time at the beginning, when a met broke my right arm.

Small time most of the time since then. I live with a certain amount of background pain. Generally, I ignore it.

I don't notice it much any more, in fact when I DO notice it is when it is gone, which happens when I go to Hawaii or Arizona. The warm weather and low humidity are the reason. Sometimes it goes away during the summer in Seattle, but not as dramatically as in Hawaii or Arizona. That's one reason I considered moving to Hawaii, but I can't. My life is in Seattle.

So, fast-forward to the recent past.

I took a four-month break from treatment this summer, the first break I had had in six years. It wasn't totally a break, because I was having monthly blood tests and regular scans, and because my right upper arm, the bone that was broken by a tumor way back in 2001, started hurting Big Time.

Lots of tests and scans, some that seemed to indicate active cancer in that bone, but the final diagnosis was edema, caused by over-use and because the upper arm had been treated with radiation. The radiation had harmed the tissues, even though it had never bothered me till now except for aching sometimes at night or in cold, damp weather, as broken bones typically do.

But the Bone Guy put me on pain meds, including naproxen, which has an anti-inflammatory effect. I think I took these regularly for six or eight weeks.

Eventually, the arm stopped hurting, just in time for something else to start giving me grief.

The Rules for the Break
Many doctors would not agree to let a patient like me, with active metastatic disease, take a break from treatment. But my doctors, Dr. Livingston in Tucson and Dr. Lee in Seattle, are smarter than that.

They were smart enough to see that I was pretty much at the end of my rope, coping-wise, last spring, that too many things, some cancer-related, some not, had piled up, and I was ready to refuse treatment, damn the consequences.

So, Dr. Livingston suggested a break, and Dr. Lee agreed. Thanks, gentlemen.

Except for the problem with my arm, I had a great summer. The best that I can remember. I could eat. Exercise. Stay up late. Drive myself places without worrying about getting home safely. Garden. And enjoy the fruits of my garden. I even cooked dinner regularly, something I haven't done for years. And I advertised for a Canadian husband (still looking, guys).

But during this time, I was having blood tests and scans. The results of these were sometimes contradictory. That's not unusual in cancer treatment. I was willing to live with a certain amount of uncertainty in order to enjoy my break.

So when I saw Dr. Lee a couple of months ago and both my tumor marker, which is a blood test, and my PET scan showed signs of greater cancer activity, we talked about it and decided to WAIT FOR SYMPTOMS.

Now, remember, my cancer cannot be cured. And I've lived with it for a long time. I've (mostly) gotten used to the fact that I have active cancer in my bones, all the time. Ugly little tumors, sitting there. Waiting.

But I live my life in spite of them. Defiantly, in spite of them.

So, we were waiting, and I, ever the optimist, thought this would go on forever. Take a look at my to-do list for the summer if you don't believe me.

Then There Was Pain
Somewhere around the end of August, I think, I started having a sharp pain in my upper left leg and the groin on that side. I noticed it when I kicked Connie's ball for him in the park, so at first I comforted myself with the idea that it might be a soft-tissue injury. But I didn't wait very long. I knew.

So, long story short, I ended up doing three weeks of radiation, which ended yesterday, thank you very much, to treat the mets in my pelvis and upper leg.

And I took lots of pain meds to handle the pain, which was pretty severe.

My radiation oncologist, Dr. Eulau at Swedish, said that the pain should stop at about the end of week two. Unfortunately, that didn't happen. I'm still waiting, and hoping, and telling myself that the pain is better, when in fact it really isn't.

But now I am totally sick of the pain meds. So I plan to e-mail Dr. Eulau and call Dr. Lee and see if one or the other of them can refer me to an acupuncturist who treats cancer patients.

The only down side to this is the paperwork that will probably be involved. I know my health insurance, WSHIP, pays for a certain number of visits to an acupuncturist, but I'm willing to bet WSHIP won't pay for it without a referral from one of my oncologists.

Anyway, that's my solution. Updates to come.

In the meantime, I am eating Malt-o-Meal for my upset tummy and drinking mint tea instead of my beloved coffee. I'm contemplating the idea of walking with a cane. And I'm going to the bathhouse with a friend tonight, to soak and scrub and talk. (See Bathhouse)

Note: If you are a new reader to my blog, please be aware that I do not like people giving me unsolicited advice. So do not e-mail me with suggestions for drugs, treatments, or any other solutions to my problem(s). If you would like to leave a comment about your own cancer, or your own solution to a problem with pain, that is an entirely different thing.

Quacks, and others selling cancer cures, please stay away. Do not post ads for your products or links to your Web sites. I am not interested, and I will take these down immediately.

@ Jeanne Sather 2007.

The One-Breasted Woman Fashion Show Continues

A package arrived from Jacqueline in yesterday's mail. I was having a bad day, so I set it aside to open today.

Things have been a bit out of whack around here. I'm feeling punk from the radiation therapy, and in pain from the mets, and the weather is rapidly changing from summer to fall, and I'm not ready. My long list of summer projects is nowhere near completed. In addition, the trip to Vancouver and my meeting with JS were a disappointment, and I've been down over that.

But I've been in this kind of funk before, and I know how to deal with it. So I've started painting the living room, doing just one section of wall a day. It will take me close to a week to finish, most likely, since I also need to do the window seats, which are tricky. (Photos to come.)

But it will be worth it. Fresh paint. And warm colors, perfectly suited for fall and winter.

So this morning I painted for an hour or so, then took Connie for a walk. After that, I talked to Jacqueline on the phone for about an hour, which cheered me up.

I opened the box from New York and laid out the two shirts. (Black sweater. Gray rusche.) My mood started to lift.

Then a quick sauna and shower, and I dressed in my new clothes for my radiation therapy appointment.

After radiation, I headed over to see Chez to have him cut my hair. I did an interview with the Seattle Post-Intelligencer last week, and the story is set to run next Monday. The reporter and I discussed photo possibilities and agreed that me getting a haircut would be a good shot.

As you can see, the shirts from Jacqueline look great, and I have cheered up. Chez, of course, did a great job on my hair. He's in Seattle, working out of a little barbershop near Seattle Center. Call him if you need a cut: (206) 283-0842.

@ Jeanne Sather 2007.

The Vancouver Report

Well, more than a few readers called me on the fact that I have left them hanging about what happened in Vancouver last weekend--did I find the love of my life, and am I getting married and moving to Canada to take on the Canadian health-care system?

Wouldn't that be fun? I was already fantasizing before I left town about hosting a Vancouver, B.C.-based radio program on health care north of the border. I even had a name for the program, "Fresh Eyes," and was collecting radio station contacts to pitch it to.

Unfortunately, I think it is safe to say that JS and I are not going to be more than friends. I really don't want to say much more because I don't want to criticize such a brave guy, and also I really do like him.

JS called me on the fact that I brought my friend Monica along. That part was OK, since I can't drive myself that far, but JS felt like I was hiding behind her. That was probably true. I felt incredibly ambivalent during the weekend.

Not having dated for such a long time (years? I think it's been years), and then with all the expectations we had both put on this meeting, it was incredibly tough.

So at the moment I am the little rat who is at the blind corner in the maze. Not sure if I should just go back to my safe, manless Seattle life, or continue the quest for a Canadian husband.

No advice, please. I need to sort this one out for myself.

There was one weird thing during the weekend. One of the men who had answered my ad a couple of weeks ago e-mailed me and told me that he had gone into Vancouver to meet me at a particular time and place and I had stood him up. I wasn't there. The weird part is that I remember telling this guy that I was coming to Vancouver for the weekend, but I don't remember setting up a time to meet with him.

OK....

@ Jeanne Sather 2007.