The Assertive Cancer Patient

Recycle Drugs: Great Minds and Other Cliches

Meet Pat Chandler.

Pat has prostate cancer and he writes a blog. He lives just across Puget Sound from Seattle, on Bainbridge Island. Recently he wrote a post about wanting to give away some cancer drugs that he wasn't going to use because his doctor had changed his treatment.

I'll admit I'm predisposed to like someone who thinks like I do on the important issues, and these issues include passing on expensive, unneeded prescription drugs to those who need them but can't pay for them.

I found out recently that the term for this is drug repository, and quite a few states already have them. So it's not like this is a particularly revolutionary idea, but it sure would help some of the 600,000 people in Washington who don't have health insurance, not to mention the hundreds of thousands (I'm guessing here) more who don't have adequate prescription drug coverage.

(Do you know how much your health insurance pays for prescription drugs? On many policies it is only 50 percent--doesn't take long to run up a huge bill if you are in cancer treatment.)

So after Pat put up his post, he was asking around, and someone steered him to my blog. (Thanks for that, whoever it was.)

We are going to put our heads together and see if we can get the ball rolling (there's the second cliche, in case you were watching for it) in Washington state on establishing a drug repository. I already talked to the folks I know at WashingtonCAN about this, and they weren't interested in adding it to their legislative agenda for this session--but I'm going to see if I can change their minds.

I've also written an opinion piece for the Seattle P-I that should run next Monday.

Here's what Pat wrote:

All you need to know is that I spent a boatload of money for a cancer drug that didn’t do me any good and yesterday I was taken off of it and switched to a different one that probably will. It was somewhat of a surprise, so I had about a full month’s worth on hand, worth more than you will be getting from your economic stimulus package check. ...

I’m not stupid, I didn’t put it on eBay or craigslist under "drugs for sale." Selling prescription drugs is a no no. I want to give them away so I called a Rite Aid Pharmacist and explained that I would like to give these life-saving drugs to someone unable to afford them. ...

So, can’t be done, she said.

I can donate an organ but I can’t donate unused pills? Doesn’t make sense does it? Prescriptions are changed all the time. People die all the time with a 3-month supply and yet people are dying because they can’t buy next week’s supply. We can help.

Read the entire post.

Read more:

Don't Dump Those Drugs!

An Alternative to the Government's Kitty Litter Drug Disposal Plan

@ Jeanne Sather 2008.

When Would You Dump Your Doctor?

That's a question, and one I'd really like to know the answer to.

I get a lot of e-mail from people who are unhappy with their doctors, but what I DON'T hear is a willingness to change doctors. The subtext to most of these complaints is that the writers feel powerless to change things with their doctors, but also feel dependent ... and hestitate to make a doctor or the staff angry by being too demanding. (And what is "too demanding" anyway? That's another good topic.)

Changing doctors when you have cancer is also complicated by the fact that you have cancer (duh) and you probably don't have a lot of energy for interviewing new doctors at this point.

And then there are all the emotions that surround cancer--fear, for one.

These emotions make us cling to what we know, because change on top of all the cancer emotions could just be too much.

This post was triggered by an article in a back issue of Real Simple magazine (September 2006) called "Should You Dump Your Doctor?"

The scenarios listed were things like a doctor who is always very late for appointments, like two hours late, and a doctor who makes personal remarks. What struck me was how trivial some of these scenarios seemed--but that's often what happens when I cross back over the border from Cancer Land into the world where healthy people live.

And this article was written for the healthy majority. Or the "temporarily able bodied," as a friend of mine living with MS used to call them.

So, the question is this: If you are a cancer patient, what kinds of problems or issues would be serious enough for you to change doctors?

Post your answer as a comment below, or send me an e-mail: jeanne.sather@gmail.com

Read more:

There's Obnoxious, and There's Assertive

@ Jeanne Sather 2008.

Cancer News, Myths, and More

First of all, let me say that I didn't know about the myth that this study has debunked. Blissful ignorance, that's me.

If I had known, I would have been mad, because it falls, yet again, in the "blame the victim" category: The idea that women with certain personality traits are more likely to get breast cancer.

Of course, that assumes that your personality is within your control, and I'm not so sure about that.

Anyway, according to a report from Reuters, some researchers in the 1980s had advanced the idea of a "cancer-prone" personality with such traits as stoicism and difficulty in expressing emotions.

The new study, done in the Netherlands, measured women for 11 personality traits and then followed them for 13 or 14 years to see who got breast cancer.

You will be happy to know that they found no link.

"... women with breast cancer should not worry that their character might have contributed to the development of their disease," the researcher who headed the study was quoted as saying.

OK, I'm going to stop here, because I could go in so many directions with this. Let me note that the study didn't say anything about assertive women having higher rates of breast cancer. Whew!

Read the report:

Study debunks personality link to breast cancer

Tell me what you think: jeanne.sather@gmail.com

One for the Guys
It was a busy week for cancer news. I also saw a report on Reuters about testosterone and prostate cancer risk.

I don't know if this one qualilifies for cancer myth status. Some two dozen studies looked at testosterone levels and prostate cancer risk, and the findings were inconclusive, according to the new report.

See: Testosterone seen unrelated to prostate cancer risk

@ Jeanne Sather 2008.

Out of Time, 2003

I would pay good money to watch Denzel Washington brush his teeth for an hour and 45 minutes, so I was prepared to enjoy a thriller in which Washington plays a small-town Florida chief of police with a complicated love life (Sex scenes with Denzel? Better than toothbrushing!).

However, even with Washington in the lead role, Out of Time flops as a thriller. It also flops as a romance--just who is the police chief in love with, anyway, and why are there no sparks between him and the woman he's smooching as the closing credits roll?

Out of Time doesn't really qualify as a cancer movie either, except that the plot hinges on a lie: the police chief believes that his girlfriend has cancer and her only hope is an expensive alternative therapy only available in Europe (Of course). So he hands over the almost $500,000 that happens to be in the safe--evidence in a drug bust.

As a cancer patient, my mouth was hanging open at the audacity: Who would claim to have cancer when they don't?

A scam artist, obviously.

Which then raises the question--how often does this kind of thing really happen?

Every so often I get wind of an urban legend about a cancer or AIDS scam. And I've heard stories second- or third-hand about people claiming to have cancer when they don't in order to attract attention and financial help, but these were people who were mentally ill.

So, if you know of any good cancer scams, send the details my way. I'd like to know.

And what happens, in the real world, when these folks are exposed?

Read more: The Assertive Cancer Patient Reviews 'Cancer Movies'

@ Jeanne Sather 2008.

Seattle Snow Day

The snow that was promised for last Saturday finally arrived. I awoke this morning to see one generous inch of snow on the tree branches and the fence that goes past my dining room window.

A few hours later, it looked like the snow was going to go the way of all fleeting pleasures and melt away, but then the weather gods changed their minds. Now it is coming down thick and fast and looks like it is here to stay.

Thus, I feel the need to introduce A Seattle Snow Day.

Those of you who live in cities and states that have snow all winter long are allowed to snicker. Just remember, we get a lot more fun out of our occasional snow flurries than you probably do out of a whole winter's worth.

The 'Rules' for a Seattle Snow Day
Get up early--establish that snow has fallen.

Go back to bed and sleep late: Nothing will be moving in this city for hours.

When boys awake, dispatch them to check school closures. This involves half an hour in front of the TV or a quick trip to the school Web site--which option will the boys choose?

Cancel all plans for the day that involve the use of an automobile--people in Seattle don't know how to drive in snow and it's dangerous out there!

Make--and eat--a Sunday breakfast. Never mind that it is a weekday. (Sunday breakfast: pancakes, eggs, apple sauce.)

Make a quick trip into the yard, still in jammies, to throw snowballs at the dogs.

Sauna. Shower. Dress.

Search for gloves, missing since last April.

Search for sled, missing since last February.

Bundle up as best you can, take dogs, sled, and boys and head for the park--it's a snow day!

On My Own
Snow days were a lot more fun when the boys were still at home--but I still have the dogs for company.

@ Jeanne Sather 2008.

"Red, Red Shoes ... "

Sing the above line to the tune of "Red, red wine ... " (Who sings that song? Anybody know?)

I just noticed as I was unpacking after my trip to Tucson (OK, the trip was three weeks ago, but that's how long it takes me to unpack. Live with it) that I now have three pairs of red shoes. Well, two pairs of red shoes and one of red sandals.

When did this happen? I don't think of myself as a red shoes kind of person, but somewhere along the way I guess I became one.

I also have a red car--the Corvair--and gorgeous red earrings, a one-of-a-kind pair made for me by my friend Jacqueline of Rebel1in8.

Then there are the one-of-a-kind clothes that Jacqueline has made for me. I love having clothes that no one else has. I was never a clothes horse either, and don't think that I'm one now, exactly. I just like being unique.

Read more:

Tucson

The Red Corvair

Rebel Fashion

Here's the link to get Rebel1in8 earrings:

Rebel earrings

@ Jeanne Sather 2008.

Zit-Faced

I was having trouble taking my antibiotic, minocycline, as directed--because I'm supposed to take it twice a day on an empty stomach, and avoid dairy products for an hour either side of taking it.

Well, that's hard for me, because my stomach is a bit upset (the other common side effect of Tykerb), and dairy foods and tofu are the things I feel like eating.

So anyway, I skipped the antibiotic for a couple of days, and my face broke out big-time. About eight or 10 small pimples on my chin and around my mouth and nose. Ouch.

Vanity is now ruling my decisions, and I'm back to taking the antibiotic on schedule, but it looks like it will take several days to get the acne under control.

The Dose
I'm only taking four Tykerb a day instead of five, because four seems to be the magic number as far as my stomach is concerned. When I take five, I'm in the bathroom all day long.

My doctors are OK with this. And as long as my tumor marker stays down, I'm OK with it too.

My latest CEA was a marvelous 1.6--which is normal, folks. I'll put up with a lot worse side effects than a few zits and an upset tummy for numbers like that!

Read more: Tykerb (Scroll down.)

@ Jeanne Sather 2008.

Cancer Survivors Project

I just found this one, on a list of sites that The Cheeky Librarian e-mailed to me:

Cancer Survivors Project

I'm kind of amazed it didn't turn up before, when we were talking about better after care for cancer survivors and people living with cancer. (See After Care.)--Actually, now that I look again, I did have a link to the "providers list" on this Web site in an earlier post.

I've just started looking at the Web site, but here's what the organization says about itself:

The Cancer Survivors Project is an organized, international community of long-term cancer survivors and their friends working together to improve the lives of children and adults after cancer.

CSP is committed to making available information regarding physiological and psychosocial late effects of cancer treatment, preventive care protocols, and appropriate health care.

The Web site includes a reading list, although it's pretty skimpy.

There is no info on the Web site about who runs the organization, where it's based, or if it's affiliated with a cancer center or other organization. Does anyone know?

I've e-mailed them to ask.

In the meantime, check it out, and let me know what you think.

@ Jeanne Sather 2008.

'Boob Joke' Research

Dee, who has a blog of her own (See Dee Updates), has asked for our help.

She wants to write an academic paper on boob jokes.

Dee is a college professor who lives in Oregon. She is going through her second round of treatment for breast cancer--hence the sudden interest in boob jokes.

Go to Dee's post to leave your jokes, comments, and wise observations:

The Anthropology of Boobs

To read more of what I think of breasts and boobs, go to these categories:

Breasts and Boobs
(scroll down)

The One-Breasted Woman Fashion Show

And:

Retiring Jabba

@ Jeanne Sather 2008.

Do You Have an Updated Will?: The Assertive Cancer Patient Poll

I've been wondering about this, so decided to put it out there and find out--

How many of you had your will and other end-of-life planning in good order at the time you were diagnosed with cancer?

Answer: yes or no

Six months after diagnosis: How many of you had taken care of your will and other end-of-life planning?

Answer: yes or no

One year after diagnosis: How many of you had taken care of your will and other end-of-life planning?

Answer: yes or no

Please answer with a comment (below), or send me an e-mail if you want me to post your answer anonymously. Feel free to elaborate on the simple yes/no answers. jeanne.sather@gmail.com

I'm very curious about this, because I know how hard it is to face end-of-life planning when you're healthy, and I think it is in some ways even harder to face when you are sick.

And I'll start the ball rolling by admitting that at the time I was diagnosed, I did not have a formal will. Only a handwritten letter spelling out my wishes for my sons if I should die.

This, despite the fact that I was a single parent, with (at that time) sole custody of both my sons. This was criminal. What was I thinking? (I know, of course, that I WASN'T thinking. I didn't want to face these issues, or something else was always more important--one thing single parents are is time-starved.)

Since then, I've done my will and other documents twice, and I'm due to update them again, now that Younger Son is 17 and counting. Older Son is 23.

Sorry that I don't have the HTML ability to build a snazzy little poll that will tabulate answers automatically. I'll just have to do it by hand.

Answers, please.

See also: To be dead sure you get the last word, write your own obit
(Note that I was interviewed for the above story FOUR years ago. Women with metastatic breast cancer are living longer.)
@ Jeanne Sather 2008.