The Assertive Cancer Patient

Cancer Bloggers Join Forces

Last week, I had what I thought was a brilliant idea: What if all my favorite cancer bloggers and I joined forces and blogged on the same topic at the same time?

That would give our readers a half dozen different takes on the same topic, and give us some synergy (hate that word, but what can you do?) in our isolated little blogging lives.

The topic I suggested was "meltdowns," because I'd been in the middle of a doozy of a meltdown for almost a week at the time, and for the first time I was blogging about a meltdown in real time. And the sky didn’t fall when I told the world I was having a hard time emotionally. A revelation.

Enthusiastic Response
Teresa at The Cheeky Librarian wrote back:
…your timing is perfect. I am building up for another round of exams on my head/body to see if any cancer can be seen (they didn't believe it was there the first time, dang it, so what is the point?), the first-born looks to be flunking his second senior year of high school (and doesn't seem concerned), a mother-in-law visit is only a week away and I am still not supposed to bend over (how else can I get ready for the inspection since no one else seems to know the floors and lower cabinets need cleaning? dripping stuff so the dog licks it up doesn't count!), and I am traveling soon to a city known for its wonderful cheese steak sandwiches yet I will never know a sandwich again - so I am prime for some dark days.

Folks at work seem to follow the Cheerful Oncologist's train of thought--in their words, I just shouldn't let things get me down. One even said that the cancer grew because I let things get at me, and I should only be positive. Blogging about ways a person is expected to apply that advice in daily life, and my predictions on what outcomes could be expected could be a good exercise, I suppose.

And Jacqueline, at Rebel1in8:
I think this is a mighty fine idea! … Next week's "meltdown" is great as I have one more post regarding the tail-end of a visit to bottom-of-the-pitsville USA. A few weeks ago my friend Tina over at www.diynotdie.com was writing about her lymphedema and after someone praised her for her positive attitude I commented:
"Just to keep it real: I love it when you're pissy, too. I’m proud of anyone who has the balls to be angry and negative sometimes—yes even when they have cancer! It’s human, part of empowering someone with cancer is allowing them the right to bitch without the fear that they are sending out a message of defeat and whining. so in short. I’m damn proud of you ALL of the time."

And then Laurie at http://notjustaboutcancer.blogspot.com/ posted http://notjustaboutcancer.blogspot.com/2007/03/raging.html.

Tina and I were talking last week and we agreed that recently we noticed a stream of similar blog posts. Bloggers, including Jeanne, were giving themselves the right to explore moments of clarity in an effort to let down the shield (as Jeanne calls it)—a small break in the uphill climb towards "positive" that doesn't have to disturb HOPE at all. I truly believe that it is not the feelings defined as "negative" that will ultimately harm us but the GUILT that is imposed upon us for not being Polly-Anna-positive 24/7 will be the magic mystery poison.

And Liz, at As the Tumor Turns:
Wow, this is funny, I was just today thinking I really need to go have my next meltdown with Jeanne. How cool would it be to be reading Elizabeth George in her back seat, with the top down and hanging out with the dogs! My own meltdowns are so pedestrian and run of the mill in comparison.

But yeah, good idea. I'm ready to blog all over the whole meltdown meme. I'm the official Not A Trouper poster child of the decade, Little Miss Meltdown, the Bad Attitude Queen. And I don't mind telling the world all about it in way too much detail.

Go to Liz’s blog for a hilarious report on a crawfish boil: “Or crawfish ‘bawl’ as they say around here.” Bonus: lots of photos of her new hair, which had a mind of its own, to say the least.

I’ll be linking to posts from these women and more. Here's the first one, from Liz at As The Tumor Turns, called Little Miss Meltdown.

Liz writes, "Sometimes a meltdown is the only sane response to a situation, and maybe just maybe, awful as it is, it deserves a little respect."

And here's another one, from Teresa, The Cheeky Librarian:
Meltdown - can information get me out of one?

Teresa writes, "If you are someone that doesn't have cancer and want to criticize meltdowns as a weakness, get your own cancer first and then come back to talk with me about it."

And Lynne at Life Changing Cancer weighed in on Tuesday morning with The Meltdown that Didn't Happen.

Here's one from Jacqueline, at Rebel1in8:
impinged diligence

@ Jeanne Sather 2007.

Meltdowns I Have Known

Meltdowns are humiliating, especially if they happen in public, as they so often do.

One of my more spectacular meltdowns occurred during a parent-teacher conference at Younger Son’s school. He was in third grade, so this was eight years ago.

It was the Monday after my second chemo treatment ever, back in the winter of 1998. I worked from 9 a.m. to 1 p.m., ran a couple of errands, then went to my son's school for a 2:30 p.m. parent-teacher conference. The family in the time slot ahead of us arrived late, and then took 50 minutes for their 20-minute conference.

And I fell apart. I started crying, and complaining to the teacher that I was just too tired for this and it was really unfair to make us wait so long. It was so humiliating. But I couldn’t help it. Classic meltdown.

The causes, of course, are pretty clear. I was too tired. I was fatigued from chemo. I had already done too much that day. I should have left, rather than wait for more than an hour, but when I suggested leaving, Robin started to cry. So I stayed. And then I cried.

I’ve had a few smaller, garden-variety meltdowns more recently, in the grocery store. I was there, despite being tired (read: exhausted, chemo-tired) because Younger Son (he’s getting all the bad press here, but he was not responsible for my meltdowns, just a bystander) insisted that there was NO FOOD IN THE HOUSE, and I, even though I knew I was too tired, went to the grocery store with him.

There is something about grocery stores when you are exhausted—the lights are too bright, there is too much stimulation (all those products shouting “buy me!”), too many choices (blueberry bagels, or plain?), other people are frazzled and in the low-blood-sugar zone, making them push and shove to get to the green peas or the soda.

So there I was, pushing a full cart while my son ambled along doing nothing, and I just lost it. Just like that. I said to him—in the produce section—“Either you help, or I am walking out of the store and leaving you here.”

He did, and we got the food and made it home, where I retreated to my bed to collapse.

The lesson: I knew I was too tired to go out again that day. But I was being a mom, and pushed myself past the point of no return. Now, when I’m tired and Younger Son demands food, I hand him a twenty and point him toward the store.

I also had a smallish meltdown on the day my dermatologist called to tell me the mole he had removed from my arm was melanoma. Actually, this meltdown started as soon as I got his phone message, “Ms. Sather, I need to talk to you about your test results.” When the test results are fine, they ALWAYS tell you so in the voice mail.

So I was already a wreck before I even dialed his number to call him back. But of course, doctors can never come to the phone when you call them, so then I had to wait for a return call. And waiting for bad news is so hard. It never gets any easier, and I’ve had a lot of bad news over the past eight-plus years.

I immediately put in calls to two of my closest friends. One talked with me on the phone, and the other came over to walk the dogs with me. That was enough to take the edge off of it, but I was spacey and weird for a couple more days. Shocked. Reeling from the simple fact that I had a second cancer.

Read more:

A Truly Big Meltdown

The Final Chapter

Things That Help

@ Jeanne Sather 2007.

A Truly Big Meltdown

This past week, I had a huge meltdown, which I’ve already blogged about in The Meltdown Report, except for the final chapter.

This meltdown was caused by a nurse (who I didn't even know) dumping her own personal shit about melanoma on me, when I was in for treatment. Unprofessional, you bet. But it took me days to get over it.

This was a five-friend meltdown, as opposed to the melanoma meltdown, which was a two-friend meltdown. What I mean is, I had to talk (i.e, rant, rage, cry, and, occasionally, talk) to five friends and my therapist before I got through it.

This was also a meltdown which required lots of personal caretaking, but I’m getting good at that:

On Day 4 of the meltdown, I came home after a trip to my doctor’s clinic for antibiotics and whiled away the rest of a truly gorgeous afternoon cuddled in the backseat of my Corvair (1964, red, convertible) in the backyard with the top down to enjoy the sun and the doors open to enjoy the company of my dogs.

For my comfort, I equipped myself with two pillows, a book (Elizabeth George), a bottle of vitamin water, and a pint of tapioca pudding.

Meltdowns are exhausting. Once all the negative energy is dissipated, you need to collapse. And not talk any more.

@ Jeanne Sather 2007.

The Final Chapter

The final chapter of last week’s meltdown is a tough one to write: My doctor fired me.

To be specific, she sent me an e-mail saying that I knew when I chose her as my new doctor six months ago that she only worked part-time, and if that wasn’t going to work for me, she suggested I find another doctor.

Well, I plan to do that. Immediately. No question. The problems I’ve had in the treatment room at that cancer center were enough to send me scrambling for an alternative, but then to have my doctor not get it …

So, what was this all about?

On Monday, I was short of breath from my anemia, plus I had what I thought was bronchitis—but could have been pneumonia, I’m not a doctor—and I couldn’t breathe. And my chest hurt.

When I picked said oncologist, who only works Wednesday-Friday, I interviewed her with a short list of crucial questions. One of these was, What do I do if I need to talk to you on a day when you are not in the clinic? And she said, “Call my office and ask to have me paged.” Great, I thought. And I wrote that down.

So that’s what I did on Monday, because I wasn’t sure if I should be heading to the emergency room or what.

I called at 10:30 and asked to have her paged. The person I talked to said very little, just took my name and number.

I called again at 11:30, and asked if they had been able to reach her. I was told they hadn’t paged her yet. I asked if they would please do so. I told the person I talked to what was wrong (the first person I talked to hadn’t asked).

I called again an hour later. I was told, only then, that they were NOT going to page my doctor, but that the nurse would call me back, “when she has time.”

I was calm up to this point, but by the time I finally did talk to the nurse, at 1:30, I was in full meltdown mode. No question.

I explained that I was only doing what the doctor had told me to do, and that no one had told me that that was not OK with the staff in the clinic. And no one had told me, the first two times I called, that they were not going to page the doctor. .. So what was up with that?

She just wanted to cut to the chase and talk about what was wrong with me.

So I pulled it together, put on my sunglasses, and went in for my chest X-ray and to get some antibiotics, and I didn’t discuss it again when I was there. I also didn’t tell my doctor about it via e-mail, figuring I would leave it for a time when the meltdown was safely over and I was talking to her face-to-face, but clearly her staff had given her an earful.

And she sent me the e-mail suggesting I find another doctor.

So here’s a question: I’m not the first cancer patient ever to have a meltdown. But no one I talked to, including my (now former) doctor or her nurse, seemed to recognize that or show any understanding, or any compassion for the fact that I was sick and scared. Why is that?

I’m disappointed.

@ Jeanne Sather 2007.

Things That Help

The only sure cure for a meltdown is time, in my opinion, but here are some things that help make it bearable.

Screaming

Breaking Plates

Retreating From the World

Blogging

Friends Who Understand
(and who DON’T try to cheer you up before you are ready)

Pudding

Escapist Literature
The piles of read-and-discarded books around my bed are growing to serious heights. I need to call the second-hand bookstore and sell a few hundred of these. If not, I soon won’t be able to make it to the bathroom in the middle of the night.

The Company of Animals

@ Jeanne Sather 2007.

Go Brazil!

Reuters reports from Rio de Janeiro that Brazil has taken the first step toward breaking an AIDS drug patent when the Health Ministry decreed the drug was in the "public interest" and too expensive to buy.

The drug, Efavirenz, is patented by Merck & Co., which refused Brazil's request for a sharp price reduction so that the government could afford to supply the drug to an estimated 75,000 people who need it. Brazil's lauded AIDS treatment program guarantees free drug cocktails to Brazilians with AIDS, according to Reuters. (Are you listening, George W. Bush?)

The report also said that Brazil wanted Merck to cut the price of Efavirenz to $0.65 per pill--the same price paid by Thailand--from the $1.59 per pill paid by Brazil.

OK, so it's not a cancer drug, but it's a great precedent, as far as I'm concerned.

Next up, Herceptin?

This breast-cancer drug costs $2,000 a dose in the UK and anywhere from $4600 to $9,600 a dose in the United States. Read more on Herceptin: The True Cost of Herceptin

Read: Brazil closer to breaking Merck AIDS drug patent

@ Jeanne Sather 2007.

Jeanne's Causes

One of the ways I cope with having metastatic cancer is to make sure my life is NOT ALL ABOUT CANCER.

One of the ways I do that is to volunteer for causes I care about. And, for the most part, the organizations and people I work with are not aware that I even have cancer. So I get a break there.

Right now, I am volunteering to help homeless kids and homeless kittens. A sad irony, the cats' lives are often better than the kids'.

I volunteer once a week at First Place, an incredible school here in Seattle for grade-school-age kids who are "in transition." None of these kids actually is living on the streets. They live in shelters and other housing for families who have been homeless.

My job is to run the Japanese Club. It's a once-a-week commitment, for just an hour. And I love it.

I teach the kids some Japanese. We do origami. We practice picking up jelly beans with chopsticks. We draw maps of Japan and talk about the ways people in Japan are different from us: They bow. We shake hands. If you try to do both at the same time (a common occurrence when East meets West), you bump heads.

The kids love that last part.

First Place can always use help. The school needs money. It needs donations (check the Web site to see what is needed right now). It needs volunteers, warm bodies to make a difference. First Place especially needs male mentors: guys who can spend at hour a week at the school just being friends with a little boy.

First Place School

Kitten Therapy
I call it kitten therapy.

I've been a volunteer with Animal Talk Rescue for about six years now. In fact, right now I'm fostering the tiny kitten I mentioned earlier, Percival. Two of my pets, one cat and my dog, Constant, came to me through the rescue.

So I know what good work this no-kill shelter does. Animal Talk's mission is "to end the plight and suffering of homeless, neglected, and abused companion animals, also to educate the public about the benefits of spaying and neutering."

The shelter can always use help--anything from fostering animals to a donation of old towels. Cash is also good.

Animal Talk Rescue

@ Jeanne Sather 2007.

Today's Successes

What is success?

Well, today, success is getting a tiny orphaned kitten to poop. That's it. Can't begin to explain how happy this makes me.

And now that the little baby has finally done his business, he is no longer crying, and he's curled up on the back of my neck, actually purring. The first purr I've heard out of this baby since I brought him home from the rescue yesterday with orders to "Make him poop." Then, he was crying, pretty much nonstop. Of course, his tummy hurt.

Missy, who runs the Animal Talk Rescue, had had Percival for about 24 hours before he came to me. In that time, she had gotten him to eat from a bottle, no small feat, and had been giving him sub-Q fluids to try to make him poop.

If he hadn't pooped by this morning, I was to give him another needle stick and pump some sterile water under his skin. You can imagine how much we both would have enjoyed that.

However, I accomplished the pooping trick by holdling his little butt under warm running water.

Second Success of the Day
I must be on a roll here, because that wasn't my only success for the day.

Yesterday, I sent out an e-mail to several women I know who also write cancer blogs. I suggested we join forces and all blog on the same topic at the same time.

I suggested "meltdowns" as our first topic, since I've been in one for almost a week now. (Coming out of it now with the help of Percival and my friends.) They responded enthusiastically, and we are going to do it.

Watch for the first posts in the next few days--early next week at the latest.

@ Jeanne Sather 2007.

Bamboo: Eat It, Grow It, Wear It

I love bamboo.

I planted a bamboo grove in my backyard a couple of years ago after watching the film, “Crouching Tiger, Hidden Dragon.”

The bamboo is now 20 feet tall and rustles like the grove in the movie. I don’t swing from plant to plant, which was part of my original fantasy, but I do sit in my tree-house-turned-vegetable-garden-in-the-sky and enjoy this huge grass.

The “vegetable garden in the sky” deserves an explanation.

The tree house was never exactly a tree house, more like a two-level fort I had built for my younger son when he was 10 or so. It has a ladder to the top level, which gets full sun all day.

So when Younger Son grew to almost 6 feet and abandoned said fort in favor of girls, theater, and sports, I appropriated it.

It’s the perfect place to put vegetables (in pots) that need a lot of sun. It also keeps them out of the reach of snails and slugs—a real problem in damp Seattle, especially if, like me, you don’t want to use toxic slug bait. And it keeps them out of the reach of the dang dogs, AKA Golden Boy and Constant, who have been known to pull a 3-foot tomato plant up by the roots and eat it.

I have two low beach chairs up there, and once it gets warm that’s where I go with the first cup of coffee in the morning. If the tomatoes are ripe, I eat cherry tomatoes off the vine for breakfast.

But I Was Talking About Bamboo
I’m just about ready to harvest some of my bamboo and use it to make garden trellises and the like.

I also eat bamboo (having spent about seven years of my life in Japan, where take no ko, or bamboo shoots, are part of the diet).

I have bamboo furniture: a bench that goes on the front porch in the summer, inside the front door the rest of the year (I know, I need two), and various other pieces.

I lusted after bamboo floors for years, but they proved too expensive, so I refinished the original fir floors in my 1908 house myself, on my hands and knees, with a hand sander (I blew out three before I was done). I call that “my therapy floor,” as I was battling my younger son’s father at the time and needed an outlet for all the negative emotions.

And now, for the first time, I am wearing bamboo.

Bought myself a bamboo T-shirt yesterday, when I thought I was out shopping for goldfish, and it is the softest shirt I have ever worn. And, of course, so PC.

What can I say? I live in Seattle.

@ Jeanne Sather 2007.

Paradise in a Pot

Over the past couple of weeks, I’ve been getting my water garden ready for spring—fertilizing the dormant water lily, scrubbing down the walls of the container, buying and installing a new pump, searching for new goldfish to replace the ones that fell prey to marauding raccoons last winter.

Yesterday, it all came together, when I got the new pump up and running and brought home four goldfish to join the water snails that seem to be breeding quite happily. Snails are good—they keep down the green slime.

Here’s a piece I originally wrote for Seattle Weekly on making a water garden. (March 19, 2003). That's me in the photo, with my own hair. I was on Herceptin in 2003.

It's March, and my custom-made water garden doesn't look like much: just a huge blue jar of quiet water with two goldfish dozing near the bottom. Come summer, though, the water garden is a focus of life at my 1908 house in Ravenna. What exactly is a water garden? Mine is a 2-foot-high blue-glazed container. The relaxing burble of its bamboo pump drowns out car traffic and other distractions from nearby Northeast 65th Street.

Family and friends settle next to it on the front porch with food and drink, wrapped in the sweetness of climbing roses, honeysuckle, and sweet peas. The pot holds a fragrant yellow water lily; waiting and watching for the lily to bloom has become something of a neighborhood event. By midsummer, the lily's round leaves cover the entire surface and provide shade and shelter for the fish. Who was the contractor of this marvel? Me. I did it myself, and you can too.

You can make your water garden much more elaborate than mine. I've seen photos of one that has a remote-control train (!) to carry fish food from the house to the pond. But yours doesn't need to be fancy or particularly expensive, either.

I bought my pot at Oasis Water Gardens in Georgetown for about $300. The nursery is well named: For several years now, I've been dropping in on my lunch hour to stroll among the ponds and admire the koi, garden furniture, and plants. (If you visit Oasis in spring, look for tadpoles in the ponds on the property--a rare sight in Seattle these days.)

I added the water lily, also from Oasis, for about $30. The bamboo pump came from Bamboo Hardwoods (about $35). The goldfish I already had, but they had been indoor goldfish until I liberated them into the much larger container last spring.

Water-garden maintenance is pretty simple. I bought outdoor fish food and some kits to test the water, but regular testing hasn't been necessary. If the water looks a bit murky, I freshen it with the garden hose. It's pretty low-tech.

Surprisingly, goldfish in an outdoor pond don't need to be fed. ("People buy fish food because it's fun to feed the fish," a clerk at Oasis told me, "but they don't really need it.") They grow fat on bugs and algae. You should not feed pond fish in the winter, when their digestion slows down, as it can kill them.
The water lily needs fertilizer once a month (in the soil, not the water), spring through fall. In winter, I take away the pump and trim back the water lily, and the garden is quiet. The fish slow down, and they're fine even if the surface of the water freezes.

Now that March is here, it's time to bring the water garden out of hibernation: scrub it down, fertilize the lily, and set up the pump--all ready for another relaxing spring and summer on the porch.

Resources: Water Gardening Basics, by Helen Nash and Marilyn M. Cook (Sterling, $21.95); Oasis Water Gardens, 404 S. Brandon St., (206) 767-9776; Bamboo Hardwoods, 6402 Roosevelt Way N.E., (206) 529-0978.

@ Jeanne Sather 2007.