The Assertive Cancer Patient

Snappy Comebacks Wanted

There is nothing worse for us writers than to be caught flat-footed with nothing to say.

My friend Teri, the Cheeky Librarian, and I have been having some exchanges about snappy comebacks—you know, the perfect words to say in response to outrageous comments, usually from total strangers.

It’s happened to all of us, and not just about cancer.

Mommy and Me
Older Son is adopted, and since he is Japanese and I am a Northern European blend (German, Norwegian, French, Irish, English, and Scottish, since you asked), it’s pretty clear to the least-observant passerby that we are not blood relatives. But it’s also pretty clear that I am his mom, not the nanny.

When we lived in Japan, strangers, including young schoolgirls, assumed that my son was half-Japanese, since my then-husband was Japanese. As a result, they called my son a gaijin--a not-very-friendly word for “foreigner” and fussed over him like the baby panda in the zoo.

One afternoon I will never forget: Older Son, then 3, and I were in Hiroshima’s Peace Park with some friends, when a group of uniformed middle-school girls on a field trip surrounded my son, shrieking “kawaii, kawaii,” (“cute, cute”) as though they had encountered the aforementioned baby panda there in the park.

Since he was clearly enjoying the attention, I did not interfere, but I’ve always wondered what would have happened if I had marched up to the girls and said, “This child is 100 percent Japanese. Why are you making such a fuss over him?”

One reason I didn’t is that the snappy comeback doesn’t work very well in Japan, especially when uttered in Japanese by a blonde gaijin. Never has, never will.

Back to America
I divorced my Japanese husband and came home to the United States when Older Son was 4, and I was shocked and dismayed by the things people asked me about my son—total strangers, in public, in front of my child. (I thought, from the perspective of Tokyo, that people in the U.S. would be so much more liberal and accepting of our mixed-race family. Nope. Not so.)

Finally, I wrote a piece for the Seattle Post-Intelligencer, and writing that piece helped me come up with a few snappy comebacks. It also, I hope, helped educate well-meaning but somewhat-insensitive people about what kinds of comments are OK.

For example, “Why did his mother give him up?” is NOT OK.

Nor is, “He looks just like a China doll.” (Mothers of adopted Asian girls get this one much more often, as do Asian mothers of little girls, from whites who think this is a compliment.)

As Older Son grew, the comments stopped, for the most part. And I suppose this experience helped prepare me to some degree for the outrageous things people say—and ask—when you have cancer.

The Masked Librarian
Teri, The Cheeky Librarian, has written on her blog about the mask she wears to protect herself from sun exposure. I e-mailed and asked her how she handles the weird looks she gets when she goes out looking like Darth Vadar.

Here’s part of her reply:

Well, the only time I have had a really bad episode of someone staring at me and making a potentially rude comment was this week ON MY CAMPUS.

I will send a message to the faculty member in charge of professionalism, offering to speak to the group of students and let them know "What's up with THAT?!" probably shouldn't be the first statement out of their mouths when seeing anyone looking a bit different on our medical center campus. (I had to rush to give a tour in the library, or I would have used the time to educate the little bugger on just what IS up with me, and how it is a miracle that I am still walking around in public.)

I am working this episode up for adding it to the blog, and including links to sites that offer comebacks, if I can find any.


I dealt with the stares last summer (when I had the white burn cream all over my face) by just looking the folks straight in the eye and smiling, if they stared long enough. I guess it helps that I have been a “booth babe” in a hundred exhibit halls, and have gotten paid to get folks to look my way--who knows. (I exhibited at medical conferences and trade shows, and still exhibit, for information resources. Used to do it for the National Library of Medicine, now do it for our library.)

Rick heard a guy say something about “You'd think they would wash the cold cream off before leaving home” to his female companion, and he just spoke directly to him that it was burn cream. I could send Rick over your way, if you need someone 6'4" and about 300 pounds to be your spokesperson, too! It helps that he is former military--gets their attention.

Read the entire post:
Still learning how to cope with the after-effects of cancer treatment

Personally, I think the straight-in-the-eye-and-smile approach works well. Most people snap to when you do that. Sometimes I add "Excuuuuuse me?" to the eye contact.


My friend Jill, also a cancer blogger, has lymphedema, and when it acts up, or when she’s flying, she bandages her arm with puffy brown bandages from fingertips to elbow.

“When I look like this,” she says, “I seem to get more questions about what I've done to myself. Sometimes I explain the whole thing. More often than not, my response is to simply agree with whatever the questioner thinks has happened.”

So:

Stranger: “Did you break your arm?” Jill: “YES.”

Stranger: “Did you burn yourself?” Jill: “YES.”

Stranger: “Did someone hit you?” Jill: “YES.”

Jill explains: “If I agree, it doesn't invite more conversation on a subject I'm tired of talking about.”

I love this strategy. Can't wait to try it.

So Cheeky Librarian and I are both looking for snappy comebacks. Please send us your contributions. We could all use a cheat sheet of comebacks to deflect these remarks before they ruin a perfectly good day. In fact, I plan to write the best ones on my arm in waterproof ink.

@ Jeanne Sather 2007.

Privacy and Blogging … Or: Welcome Back, Fat Doctor!

Last week I was working on a post called “Doctors Who Blog,” and I went to Fat Doctor, my favorite doctor-written blog, and IT WASN”T THERE.

Luckily, I had Fat Doctor’s e-mail, and I shot her off a message asking what had happened. (Apparently I was one of about 300 unhappy readers who did so.)

The short version: Fat Doctor blogs anonymously, but she also didn’t keep her blog a secret, and someone at her workplace went to the boss and outed her and complained about the blog. (And the boss wouldn’t tell her who it was. Argh.)

Read Fat Doctor's explanation of what happened:

True Friendship

Note also that Fat Doctor has a new Web address: http://fatdoctor.org/ and a HIPAA link.

This sounds like spite to me. Maybe because she is such a fabulous writer, and most doctors can’t write a legible prescription, let alone a postcard or a blog post.

(An aside: I’m not just dissing doctors here. I’m a writing teacher, have been for years, and most doctors I’ve met cannot write for a lay audience. The other profession—with the notable exception of John Grisham—is lawyers. Something like 70 percent of lawyers say they wish they had chosen another line of work, they hate being lawyers, and about half of those probably want to be writers. Most of the ones who have come my way as students just don’t have it. They also cool rapidly when I tell them how much the average freelance writer makes, as compared to the average lawyer.)

More on Privacy
When I started writing my blog, I never considered doing so anonymously. After all, I had been writing very personal stories about my life with cancer under my own name for years. (See Jeanne’s Diary.)

However, I have run into a few mud puddles in the road with my blog.

It’s hard to explain, but I’ll try. I am a very public cancer patient on my blog and in my other writing. Almost a Professional Cancer Patient, you could say. I do radio, TV, and magazine interviews when asked.

But in my private life, I keep the shields up. I’ve learned over the past eight-plus years that I need to do this to protect myself and to keep my life as normal as possible.

So there are a lot of people who know me slightly—like the folks at the grocery store, people at First Place where I volunteer, and members of my dragon boating team (NOT a cancer team), who do not know that I have cancer.

And that’s the way that I like it.

When acquaintances, or even friends, who know I have cancer, ask me how I’m doing (You know: “How aaare you?” …with the big sad eyes), I just say fine, and ask how they are. Most people don’t push.

I only talk to my closest friends (and the readers of my blog) about what is really going on.

The problem with the blog is that people who know me but are not close friends are reading it and then making assumptions about how I’m doing. And acting on those assumptions.

A group of my former students decided to send me a gift certificate for a couple of meals from a professional chef, because one of them read some of my posts about meltdowns. Sweet, but embarrassing. I have a professional relationship with these folks. I don’t want them reading about my meltdowns.

And one of the women in my writer’s workshop heard I wasn’t doing well and sent me an e-mail saying that she guessed I was canceling the workshop that week. (!?!?!?)

The reality is, my blog is not written for these folks, who don’t have cancer. But I haven’t quite gotten to the point of asking them not to read it. Maybe I should.

There are also the folks who know me who read the blog and then send me advice—a real hot button for me. When I want advice, I ask for it. When I don’t ask, I don’t want it. Pretty simple.

I’m thinking of sending these folks e-mail that says, "My blog is not for you, please don't read it."

My audience is people with cancer, near and far.

Liz’s Words of Wisdom
I e-mailed Liz, who blogs anonymously, and asked her about the privacy thing. Here is her reply:

When I first started my blog it was just for a few close friends and family, since I was tired of attaching jpgs to mass e-mails. But somehow word got out, and before long I got "discovered." Two of my former employers in California published public links to my blog, without my permission, using my full name, which I'd never used on the blog, and suddenly I was overrun with former clients, readers, co-workers, distant acquaintances, all who know exactly who I am.

Gah! It really gave me the creeps and also affected and inhibited my ability to write freely and personally, not to mention the profanity issue. And what after all is cancer without profanity?

But after giving it lots of thought, I decided to just keep going the best I could in spite of them, because: a.) writing and having witnesses is therapeutic for ME; b) it helps me keep a running record of what happened and what I looked like as it happened; and c.) every day several dozen people stumble on the blog via search engines looking for cancer-related information. And maybe, just maybe, a brutally honest and deeply personal account of hell peppered with random profanity will be helpful to them in some small way. I try to write things I wish I could have read when I was going into it.

And then there’s the brainhell blog, also anonymous, but I couldn't get it to open right now.
Here's the URL: http://www.brainhell.com/

Liz reminded me that Brainhell has a "blog etiquette" link in his sidebar, where he asks people--friends and relatives--who know him in the real world and stumble on his blog to send him an e-mail and let him know that they have read it. I think he also makes it pretty clear that friends and family are NOT his audience.

Comments, please: If you are a cancer blogger, please add a comment telling me if you blog anonymously or not, and why or why not.

Also: Who reads YOUR blog? And do you (secretly) wish they would stop?

Thanks.

@ Jeanne Sather 2007.

Universal Health Care: Obama Gets My Vote

Barack Obama is the first presidential candidate to come out with a promise of universal, affordable health insurance. For that, he has my vote. It's that simple.

One irony: the news story from AP says the plan is "similar to the one covering members of Congress." Congress has always had a way of taking care of its members, while leaving the common folks out here struggling to get quality, affordable health care.

How many years have we been waiting for this? The Clintons came the closest, in recent memory.

Obama offers universal health care plan

Other candidates:
Democrat John Edwards thinks the answer is to require everyone to have health insurance, in the same way that states require all drivers to have auto insurance. How many of you have been hit by an uninsured motorist? I have.

The other problem with Edward's proposal is the COST of insurance, an issue he doesn't address. Of course, this is a man who reportedly gets $400 haircuts, so he may not have a good handle on the finances of ordinary Americans.

And then there's Hillary Clinton, who has promised universal health care but has yet to provide specifics. What's she waiting for? Of all the Democratic candidates, she is the one with a leg up on this issue, but Obama got there before her.

Read the details:

Obama's Plan

@ Jeanne Sather 2007.

Liz Needs Help

Who helps cancer patients? Well, it ain’t the government. This we know.

Some hospitals provide limited financial assistance for their patients. Many others do not. (At too many cancer centers, a social worker hands over an out-of-date list of possible sources of help. And that’s it.)

If you apply for Social Security Disability, as I did over a year ago, you wait SIX MONTHS to receive your first payment. A disabled person could starve to death in six months.

Anyway, if you are a regular reader of my blog, I’m probably preaching to the choir, so I’ll stop, and just make my pitch:

Liz, author of my favorite cancer blog, As the Tumor Turns, needs help. She’s put a “Make a Donation” button on her blog. If you have a little cash to spare, and especially if you are a reader of her blog, please send it her way.

Here’s the link:
http://spinningtumor.blogspot.com/

And Liz’s explanation of why she needs help:
Busted By Murphy's Law Again

I plan to. We need to help each other.

Jeanne

Inside a Women’s Bathhouse

On a Saturday night, the Olympus Women’s Health Club is crowded with naked women of all shapes, sizes, colors, and ages.

Many of the women who frequent the bathhouse belong to the local Korean community in Lakewood, a suburb just south of Tacoma, Wash. For Korean women, the bathhouse is more than a place to get clean. It’s a community resource, a home away from home: a place to read newspapers and magazines in their native language, eat Korean home cooking, and catch up on gossip.

Other women drive from as far away as Seattle (45 minutes to the north) or Portland, Ore. (two hours to the south), to experience cleanliness, Korean-style.

The Olympus spa, which now has a second location in Lynnwood, a suburb north of Seattle, is a word-of-mouth sensation among women in the Pacific Northwest. They come, usually with friends, to drop their cares at the door of the women-only facility, where they find communal tubs for soaking, loofah massages for banishing rough skin, and the kind of conversation that only flows when women get naked together.

The ancient Romans had their marble palaces devoted to cleanliness and relaxation; the Japanese, their hot springs resorts and palatial public baths; and the Scandinavians, their saunas. The Olympus bathhouse combines a bit of all of these.

I’ll Have Mugwort, Please
A friend and I sign in at about 7 p.m. and are given waivers to sign and a sheet of rules written in charmingly fractured English: “Prohibit to enter by people with communicable disease.” The $30 entry fee covers unlimited use of the bath and sauna area, which has two heated pools, a cold pool with a waterfall, mineral pools, and two saunas—a dry sauna and an herbal steam room.

It also covers access to the “earth energy” heated rooms, which have floors of sea salt, sand, dried mud with mugwort, and granite.

Massages, facials, body wraps, and full-body scrubs are available for an additional charge. The most popular of these is the Asian-style full-body scrub, which lasts an hour.

When we check in, we are given locker keys on wristbands, bath towels, smaller towels for washing, striped cotton gowns, and cotton caps to cover our hair. We leave our shoes in cubbyholes on the way to the immaculate changing room, when a puzzling sign greets us: “Milk, oil, eggs are not permitted.”

We don our cotton robes and caps and head for the baths. The décor is an amusing combination of East and West—faux marble statues of chubby children look down on a row of low taps with stools and buckets for bathing, Asian-style, before entering the baths. Most of the Western women opt for showers instead.

For the next hour or so, we move between hot tubs at 97 and 104 degrees, the ice-cold waterfall tub, a mineral bath at a cool 90 degrees, and the two saunas.

There’s no need to hurry: The bathhouse is open until midnight on Friday and Saturday nights.

Small groups of women gather in each pool, chatting softly about work, family, men, and health issues, with an occasional reference to goings-on in the broader world. As the evening wears on, the conversations slow, becoming softer and more disconnected.

We make a brief foray to the earth energy rooms, where the various floors are covered with canvas, but we don’t stay long. We are starting to feel the heat.

The Ahhh Effect
Finally, it’s time for my scrub. The massage therapist sends me to sit in the herbal steam room for a few minutes, then calls me to her table in a narrow room just off the baths where four massage therapists work elbow to elbow. I lie facedown on the table and the therapist dons two loofah mitts and starts scrubbing upward from the bottoms of my feet to the skin behind my ears and every inch in between. She rolls me to my side and then my back as she continues, rinsing the dead skin away with buckets of warm water every few minutes.

Over and over, she scrubs my ankles, the skin between my fingers, under my chin, the tops of my feet … it feels heavenly. I drift into sleep. The final luxury is a gentle scrub with rich soapsuds and then, while I’m still soapy, a firm massage of my neck, shouldes, back, and head.

The therapist helps the new me off the table and sends me on my way with a laugh as I struggle to balance my oh-so-relaxed body. My skin is an smooth as the proverbial baby's bottom. I find my friend, and we head for the small restaurant inside the bathhouse.

There's no need to dress. Women gather in their identical cotton gowns and caps, towels slung over their shoulders, to order from a menu scrawled on a white board on the wall: fried rice, seaweed soup, pot stickers, cold noodles, and Japanese udon noodles. All the meals are served with a array of vegetable side dishes in little bowls.

Finally, we head out into the dark of the drizzly spring evening, feeling taller, thinner, more balanced, and cleaner, inside and out, than ever before.

Olympus Women’s Health Club

Tacoma:

8615 S. Tacoma Way
Lakewood, WA 98499
(253) 588-3355/ 582-6625

Lynnwood:

3815 196th Street S.W. Suite 160
Lynnwood, WA 98036
(425) 697-3000

I originally wrote this story for the MyWellness Web site in 2000. Unfortunately, the site never got out of beta—another victim of the Web bubble.

@ Jeanne Sather 2007.

The First Strawberry of Summer

Last night, Friday, May 25, my friend Laurie and I ate the first two ripe strawberries of summer from my garden.

I wanted to document this, because I believe this is the earliest ever that I have had ripe berries. There are quite a few more with just a blush of red across their cheeks, so berries are coming soon.

Then Laurie and I headed out to the women's bathhouse in Lynnwood for a soak and dinner of Korean tofu soup. The bathhouse is a great place--relaxing beyond belief. I wrote a piece about it a few years ago that I will find and post.

I also want to post a progress report on Percival, my little foster kitten, who is now about six weeks old and has started to play--right on schedule. He's chasing a little ball around the bathroom and attacking my toes with needle-sharp kitten claws. I wish I had the capability to post video on my blog so that readers could watch him hop across the floor.

Other than gardening and trying to get the house cleaned up, my holiday weekend will be mostly quiet. Both sons are coming over tomorrow, and we'll probably go out to dinner. Massage today, and a short visit to Folklife to hear my friend Jill sing. I like Folklife, a huge Memorial Day weekend festival here in Seattle, but I'm not in the mood for crowds these days.

I'm still coming down from the stress of meeting my new Seattle doctor last Wednesday--my third oncologist since Dr. Livingston left town. What can I say? He's hard to replace, and I have high standards for my doctor(s). This new doctor, Dr. Lee, did his fellowship under Dr. L, and I think they will work well together, my local oncologist and my long-distance oncologist.

@ Jeanne Sather 2007.

What I’m Eating

Today, for the first time this year, I’ll be eating homegrown, organic lettuce from my garden. Yum.

I’ll probably be eating lettuce every day for about two weeks, until it’s gone.

Next up: strawberries.

I think my strawberries, also organic, will start ripening by mid-June, which is early for Seattle. Looks like my 100-square-foot plot will produce a bumper crop again this year. Last June, I picked a quart of berries a day for weeks.

Fresh berries for breakfast, with lots left over to make jam. Nothing compares to homemade strawberry jam, to hear my sons tell it. They eat it by the tablespoon when they think I’m not looking.

Onions and chives are ready to add to my first salad of the year. Ready soon: peas, carrots, beets and their greens … tomatoes are just blooming, so it will be weeks before I pick the first tomato—always something of an event. And potatoes will be ready by late summer.

I also have a "volunteer" in among the lettuce and onions. I think it's a pumpkin, from a seed that got dumped into my compost pile. This is great: I love surprises in the garden.

I spend at least an hour in my garden most mornings. There’s always work to do.

The benefits of gardening: exercise, stress reduction.

The benefits of eating homegrown produce: better nutrition in fresh-picked food, living more lightly on the Earth. Shipping food hundreds, sometimes even thousands, of miles to market uses up a lot of resources.

More on gardening:

Grow Your Stress Away

The Cancer Garden

Bamboo: Eat It, Grow It, Wear It

Paradise in a Pot

My Mother's Garden

@ Jeanne Sather 2007.

Grow Your Stress Away

For stress relief, get back to the garden. The natural rhythms, fresh air, colors, smells, and tastes of working with plants help to relax the mind, body, and spirit. Your approach is what is important: If gardening is just another chore (or if the garden is simply too big), the experience could be stressful. If you view it as enjoyable, gardening can relieve stress.

If you are new to gardening, don’t plan to plow half an acre: start small. You may want to grow only one vegetable. Broccoli is one of the easiest to grow, as well as one of the best for you.

Recent research shows that broccoli helps to prevent strokes, cataracts, and cancer. Ounce for ounce, broccoli has more vitamin C than oranges and as much calcium as milk. It’s also a great source of fiber and vitamin A.

Start by planting broccoli seeds indoors in small pots in the spring. Move them to the garden when the plants are several inches tall and frost danger has passed. Start new plants on a two-week cycle, and you’ll have fresh-picked broccoli all summer.

Hate broccoli? Try another cruciferous vegetable: cauliflower, cabbage, kale or Brussels sprouts.

In addition to relieving stress and helping to prevent cancer and other diseases, women who garden also protect their bones against osteoporosis, the bone-thinning disease that affects half of all older women. Older women who garden at least once a week have stronger bones than sedentary women, according to a recent study by researchers at the University of Arkansas in Fayetteville.

So get growing!

@ Jeanne Sather 2007.

Name the Gizmo: What Is This?

Anybody have any idea what this gizmo is called?

I know how it's used: Patients who check in at the Arizona Cancer Center in Tucson are given one of these gadgets at the front desk. When it's time for you to move on over to the financial office, it beeps and tells you to go there.

When it's time to head back to your doctor's clinic, it beeps again, and gives you that message on the screen.

I like it. One reason is that this way no one is calling your name out in a huge lobby full of people. So it protects patients' privacy. And two, I like gadgets.

But what is it called? Or maybe we should just make up a name?

Any ideas?

The photo at right is a closeup of the screen on the gizmo.

@ Jeanne Sather 2007.

A Break From Treatment

Back home in Seattle after a five-day trip to Tucson to see my oncologist. Rain pouring down ever since I got home, and temperatures about 50 degrees below those in Tucson. (Shiver.) Also gas prices jumped about 50 cents a gallon while I was gone, putting them about that much above the prices in Tucson ($3/gallon in Tucson, $3.50/gallon in Seattle). What's that all about?

The good news is that my doctor said I could take a break from treatment--the first I've had since my cancer metastasized to my bones five and a half years ago.

So while sorting myself out from trip--unpacking, getting my animals back home, sorting through STACKS of junk mail, getting the garden back into shape, thinking about cleaning house (but not actually getting to it yet)--I've been thinking about what it means to not be in treatment.

• More time. I won't be spending four to five hours at the treatment center once every three weeks.

• More energy. Not immediately, but soon.

• Less stress, for the most part. Going in for treatment, even after all this time, is incredibly stressful for me. Now, I'll have some stress from the usual tests--tumor markers, MRIs, PETs--but that's all.

• Hair. My hair should start to grow again soon. Right now, my eyebrows and eyelashes are nearly invisible, and the hair on my head is wispy with scalp showing through. Downside: I'll have to start shaving legs and undersarms again.

• Appetite. I haven't had a healthy appetite for months, maybe a year.

• Fewer drugs. I've been taking something like seven prescription drugs a day. That number has dropped to three or four.

• Teeth. I can get my teeth cleaned and maybe have some dental work done that I'd been putting off because of the Avastin. Avastin interferes with blood supply to tumors, and also makes you slow to heal, so I couldn't have a tooth pulled or other work done while I was on it.

• Fingernails. My nails had pretty much stopped growing the past few months, and then split easily, sometimes right up the middle, which hurts.

• Tummy. I've had an upset tummy for something like two years here. I'm hoping the break from chemo will allow it to calm down.

But mainly, the benefits of this break are in my head. I was so tired of treatment and all the issues that surround it, that I was ready to give myself a break, with or without my doctor's approval.

Tomorrow, I'm interviewing a new oncologist in Seattle. Expecting that to go well--I'm calm now, after the trip to Tucson, and I know what I want. If this doctor isn't the right one, I'll keep looking.

Read: The Assertive Cancer Patient: Chooses the Right Doctor

@ Jeanne Sather 2007.