The Assertive Cancer Patient

'Me Doctor, You Patient'

Sometimes a great expression comes to me when I'm writing ... or at least, an expression that delights me for its potential to communicate what I'm trying to say. 

In the post I wrote just now about Tony Back, a great medical oncologist here in Seattle, I said Tony wasn't big on status, the "Me Doctor, you Patient" kind of thing. (See: Doctor/Patient: Giving Bad News) 

And it struck me how many cancer doctors ARE big on status, on having the last word, on putting their own egos ahead of their patients' needs ... 

So, if you have a great "Me Doctor, you Patient" story, send it along. Post it as a comment below (comments are held till I approve them), or send it to me in an e-mail: jeanne.sather@gmail.com

And if you have a story about a great doctor who puts YOU first, send that along as well. 

Thanks. 

@ Jeanne Sather 2008. 

The Chicago Tribune: The "Pinklash"

Just as I was sliding into my annual mid-October depression--triggered by the anniversary of my mastectomy compounded by the endless array of pink crap for sale everywhere I look and e-mails asking me to help "celebrate" breast cancer awareness month--along comes some much-needed validation:

A headline in the Chicago Tribune, one of the nation's better daily papers:

Fighting cancer ... with doughnuts?

Here's the top of the story: 

October, in case you've been in a cave, is Breast Cancer Awareness Month, unleashing a flood of pink products that benefit research and outreach programs. 

Pink can openers, pink M&Ms, pink tweezers and pink Viva paper towels, to name a few. But while many view this blitz as painless philanthropy, others see an out-of-control marketing gimmick. 

It's called "pinklash" and one place you can find it is on Jeanne Sather's blog, www.assertivepatient.com. Sather, a Seattle woman who has been battling breast cancer for a decade, runs an annual contest for the tackiest pink items. This year, her money is on the pink hair extensions, courtesy of a Lynchburg, Va., salon.

"How are women bald from chemo going to feel?" she writes. "If you know a woman who has cancer ... offer to go to the grocery store."

Here's the link to read the rest of the story: 

Fighting cancer ... with doughnuts?

@ Jeanne Sather 2008.

You Say 'Pal-iative,' I Say 'Pay-liative'

However we pronounce it, why do we run away from the concept of palliative care? 

Probably because for most of us, palliative care is associated with hospice, an idea we would also like to avoid. Most families wait and wait to call hospice, until their loved one is clearly dying, even though they could have been receiving hospice services for the last six months or even one year of life, depending on the hospice program they contact. (I have a note in my end-of-life paperwork instructing my sons and friends to call hospice EARLY. Let's take advantage of those services.)

BUT, as the Cheeky Librarian points out in a recent post, palliative care is not just making dying cancer patients (and people with other diseases, of course) comfortable in the final days and weeks of their lives. Palliative care is also intended to help manage symptoms and side effects--no need to list those here, we're all plenty familiar with them! 

In her post, she links to a story from the Washington Post about a national scorecard that ranks palliative care across the country, and she also gives the link to check out your state. Good information to have. 

Here's the link: Palliative Care Scorecard

Jack and Jill

The Cheeky Librarian also blogs about the Jack and Jill Late Stage Cancer Foundation, which offers "memory opportunities" to the children of parents who have late-stage cancer with limited life expectancy. 

I don't know about you, but I was busy making memories with my sons long before my cancer was diagnosed, and I've kept it up since, but it would be nice to have someone else pay the bill for that once-in-a-lifetime trip. However, my sons are 18 and 23 now, so I expect we wouldn't qualify. 

Those of you with younger children and advanced cancer, here's the link to Teri's post: Jack and Jill 

Oh, and here's the link to my big ("memory opportunity") train trip with Younger Son: Home Again, Home Again 

Scan Dance

In several posts that Teri, the Cheeky Librarian, wrote over the past weeks, she used the term "scan dance," which I love and which I am officially adding to my glossary of cancer terms. See: Language of Cancer

Teri, who has an incurable cancer, has to have tests and scans whenever she has pain or another symptom that cannot be explained.

Here's part of what she wrote:

I have entered into another period of 'scan dancing' - that special time in a cancer patient's/survivor's/fighter's life when you get the concerned look on the doctor's face during a checkup, and they refer you to a scan to check things out further. 

After the dances I was put through in 2006 when they were trying to determine what had invaded my left cheek (mumps? lymphoma?), then again in 2007 when I was trying my best to grow a unicorn horn out of my radiated skull over my left ear, you would think that I would be used to the rhythm and be able to glide along, tra-la-la. 

During the day, I think I manage the steps well - I am productive, and am keeping up with duties at work. I drive vehicles, navigate traffic, purchase items, laugh at tv humor, and can attempt higher math problems. But outside of those 8 hours where my time is the boss' and my customers', I am a wreck. 

I haven't been able to be productive on projects at home and on my own computer. I can't even do well emailing friends at the moment. I have scheduled my crying times to coincide with showers or when family members are out of the house ...

Yup, that all sounds familiar. See my category Meltdowns . 

Click here to read the rest of the post, but I'll give you the good news right up front: no cancer was found during Teri's latest round of scans. Now she just has to recover from the scan dance. Love ya, Teri. 

@ Jeanne Sather 2008. 

Changes at 'Cure'

I received a press release from "Cure" magazine the other day--you know the one: it's found in most oncologists' waiting rooms.

I don't read it, and I don't like it, mainly because of the name.

I have metastatic breast cancer, which cannot be cured, and I've had it for more than six years now, so why would I want to read a mag called "Cure"? So NOT my publication.

Anyway, according to the press release, "Cure" is expanding its coverage, to include those of us who are long-time cancer survivors. Now, maybe it's just me, but I find this exquisitely funny--how long did it take this magazine, supposedly written for cancer patients, but really produced for the drug companies that buy the advertising that pays the bills, to realize that some of us are surviving out here? And that maybe we have issues that were worth writing about?

The press release also uses the word "survivor," which is another one of those cancer buzz words that has lost its meaning. What does it mean to be a "survivor"?

To me, a survivor is someone who has survived cancer--that is, they are either cured or in remission. But no, now I'm reading that "We're all survivors" from the moment of diagnosis!

No, I don't consider myself a cancer survivor--I am, for better or for worse, a cancer patient in continuous treatment. I have active disease.

Anyway, here's the e-mail I sent in reply to the press release (No answer yet):

TO: Alexandra.Hurd@curetoday.com

Hi Alexandra--saw your press release (well, you sent it to me), and I have a question about the stats you quote on long-term cancer survivors: Does that mean "CANCER-FREE" survival?

Or does it include those of us who are living a long time with metastatic cancer--not cured, and won't be cured, but living pretty well year after year.

That was one reason I have never liked your magazine--by its title alone it was saying it was not a magazine for me. I have metastatic breast cancer, and have for the past six years. I'm 10 years out since my initial diagnosis.

However, if you are serious about writing stories for this audience, I would like to talk to you about writing for the magazine.

Thanks,

Jeanne

Coincidentally, I had just had a conversation a few days ago with an editor at a health Web site, and during that conversation I suggested that the Web site add a channel (or section) for people with metastatic disease of all types. She didn't go for it.

A Footnote:
Here is the statistic I questioned in my e-mail, from the press release:

"The National Cancer Institute estimates there are 12 million U.S. cancer survivors, a number that is expected to increase to 20 million by 2030."

Not clear if that includes only people who are cured or in remission, or if it includes the long-term cancer patients like me. Enquiring minds would like to know. I'll get on to the NCI next.

@ Jeanne Sather 2008.

Ted Kennedy's Cancer

I was not going to write a single word about Ted Kennedy's cancer, except to note that the photo accompanying a recent story on CNN in which my blog was mentioned had a photo of Ted, post-diagnosis with a brain tumor.

The reason? I think we should leave public figures who have cancer alone. And we certainly shouldn't round up "experts" to give them advice on how to deal with their cancer, which is what the media loves to do.

This happened not long ago to Elizabeth Edwards. See:

ABC News: Shame on You

Rush Limbaugh and Elizabeth Edwards

So when a friend sent me the link to this story in the Boston Globe, I read it, and I have to admit that I agree with most of what the writer said, except for this fact:

WHO ASKED HER? Did Ted Kennedy put out a call for help and suggestions about how he should deal with his cancer? Don't think so.

Read: 'Fighting' isn't how you deal with cancer

I sent this e-mail to Judy Foreman, the author of the piece:

Subject: Good piece about Ted Kennedy, but ...

Did he ASK for advice from the general public and from newspaper columnists?

How about, let's leave the poor guy alone? (Unless he asks how he should
deal with his cancer.)

Jeanne

My e-mail bounced back, so I guess I'll try sending it again.

Read more:

Soapbox No. 1: Whose Disease Is This?

@ Jeanne Sather 2008.

More Stories on MedTrackAlert

I've been writing more stories for MedTrackAlert, and I'm really grateful for the work, especially now with my car repair bills (no, the Red Corvair isn't back home yet) and vet bills for poor GB (haven't seen a final bill yet--they are tactful about these things when a pet dies, but I'm guessing it's going to be up around $2,000).

Here are links to the latest three stories of mine that MedTrackAlert has published:

How to respond to hurtful comments

Get help with your bills from a specialist

Tips for sorting out medical bills

Here's the link to the first piece I wrote for them, back in April:

Story on MedTrackAlert: How to Talk to People With Cancer

MedTrackAlert
From their Web site:
MedTrackAlert is a consumer health information company dedicated to helping people better understand the benefits and risks of prescription medications.

We provide our members with important, time-sensitive news to keep them aware of new advances, adverse drug interactions, and potential dangers related to the medications they take. Our goal is to help you begin and maintain a fruitful collaboration with your doctors in the management of your health.

How It Works
We deliver news through our Web site and e-mail newsletters. Registration for our service is completely free and provides access to our full archive, health management and assessment tools, and free samples from drug manufacturers.

@ Jeanne Sather 2008.

Another E-mail From Anna

Anna wrote back just now, and she said something that I just have to post.

She was praising my blog, and she said, "You are not a competitive complainer."

In other words, she can tell me what's going on with her, and I don't have the need to top her with a worse cancer story about myself.

I'm posting this not because she is praising my blog, but because I love the words she used. I've never heard that expression (I think she invented it), and I love it. She was also referring to support groups, and how this sometimes happens.

We cancer patients don't need to compete with each other. We are all in this leaky lifeboat together.

@ Jeanne Sather 2008.

Story on MedTrackAlert: How to Talk to People With Cancer

A editor with MedTrackAlert found me through my blog and asked me to do some writing for them.

This is the first piece that's been published. It first went out in an e-mail newsletter and then was posted to the Web site.

Those of you who know me will recognize that what to say--and what not to say--when someone you know has cancer is a topic close to my heart. No writer's block with this piece!

How to talk to people with cancer

MedTrackAlert
From their Web site:
MedTrackAlert is a consumer health information company dedicated to helping people better understand the benefits and risks of prescription medications.

We provide our members with important, time-sensitive news to keep them aware of new advances, adverse drug interactions, and potential dangers related to the medications they take. Our goal is to help you begin and maintain a fruitful collaboration with your doctors in the management of your health.

How It Works
We deliver news through our Web site and e-mail newsletters. Registration for our service is completely free and provides access to our full archive, health management and assessment tools, and free samples from drug manufacturers.

@ Jeanne Sather 2008.

Great Quotes From Cancerland

"...chemo has turned me into a potted plant."
--Liz, As the Tumor Turns, The Missing Weeks, Part 2

"Cancer patients such as myself consider applying for health insurance a sporting event."
--Jimbo, Jet City Jimbo

"I just want clean margins! Why can't anything in my life have clean margins?"
--Sara, Moving Right Along, in response to my post, Winning and Losing

"She would very much like to have a break from trips to anyone's infusion room."
--Dr. Robert Livingston, in chart note RE Jeanne Sather

The door back into my old life is closed, forever.
--Gudrun Kemper, Health and Happiness

If you poison the environment, the environment will poison you.
--Tony Follari

(More to come)

Great Quotes From Cancerland

"...chemo has turned me into a potted plant."
--Liz, As the Tumor Turns, The Missing Weeks, Part 2

"Cancer patients such as myself consider applying for health insurance a sporting event."
--Jimbo, Jet City Jimbo

"I just want clean margins! Why can't anything in my life have clean margins?"
--Sara, Moving Right Along, in response to my post, Winning and Losing

"She would very much like to have a break from trips to anyone's infusion room."
--Dr. Robert Livingston, in chart note RE Jeanne Sather

The door back into my old life is closed, forever.
--Gudrun Kemper, Health and Happiness

(More to come)