The Assertive Cancer Patient

People Mag Listens to Jill!

My friend Jill, an assertive cancer patient if there ever was one, was interviewed by People magazine for its story in the current issue on Elizabeth Edwards' breast cancer recurrence.

Jill also has metastatic breast cancer and is a blogger. Her story is told in just a few sentences in a sidebar, "When Breast Cancer Returns." The best bit is the quote: "This is not the life I planned, but it's a good life anyway."

Thanks, Jill.

People managed not to push too many of my hot buttons in writing about Edwards, although the headline on the story is PINK, and the cover teases the story: "Elizabeth Edwards: Her Brave Cancer Fight."

Ever notice how people with cancer are always "brave"? Or "courageous"? I've written about that before. Here's the link: The Language of Cancer

More on Elizabeth Edwards:

Rush Limbaugh and Elizabeth Edwards

ABC News: Shame on You

E-Mail From John Edwards

Mammograms, MRIs, and Staying Vigilant

One of the hardest things about living with metastatic cancer is the need to stay constantly vigilant for signs of "disease progression" (don't you love that term?) or a recurrence, without driving yourself crazy over every little thing.

It's a hard line to walk.

I had just had my annual mammogram on my remaining breast when I read a news report that women who have breast cancer on one side should have MRIs to check the other breast.

Reuters reported the new recommendation from the American Cancer Society, which recommends using MRI to check the other breast because it picks up more tumors than a mammogram. Reuters also reported that one in 10 women who have had breast cancer on one side will develop cancer in the other breast--something I didn't know.

I haven't gotten the results of my mammogram yet, but now I need to e-mail my doctor and ask her if she thinks I should be getting regular MRIs on the left side. More tests, sigh.

Saturday Update
Talked to my doctor on the phone yesterday, and she said my mammogram was fine. (Relief.) She also said that I could have an MRI if I wanted, but that with women like me with metastatic disease, she doesn't worry so much about a "second primary" a new, unrelated cancer, because I'm in treatment all the time anyway. Plus a new tumor in the other breast would most likely show up on the scans I already get regularly.

I love it when my doctor does this: Explains things clearly, and then leaves it up to me to make the decision. I opted not to get a breast MRI. I've got better things to do with my time.

We also talked about my shortness of breath when I exercise, and it turns out I'm anemic from the chemo. So I need to swing into action on that one--more iron in my diet, and also an iron tonic, which is better absorbed than iron supplements in pill form.

But at least the shortness of breath is not caused by damage to my heart from the Herceptin, which I was afraid it might be.

Read the report:

New recommendations call for MRI in breast cancer

@ Jeanne Sather 2007.

How to Get What You Need, Part 2

I've been in cancer treatment for a long time, and when my long-time oncologist moved to Arizona and I had to look around for a new doctor, one of the most important issues for me was that I would have the same nurse every time I went in for treatment. (Except when she's out sick or on vacation, of course.)

This helps me feel safe in the treatment center, and also helps prevent mistakes.

Once I chose a new doctor, I had to change cancer centers, but my new doctor told me I could choose a regular nurse to give me my treatment. But it turned out not to be that easy. The treatment center balked at my request.

After discussing this problem with my doctor a couple of times, I experienced the Afternoon From Hell at the treatment center.

Here is the e-mail I sent my doctor afterward:

The first problem:
Zometa.

The nurse told me I was scheduled to get zometa. I told her I had gotten it the last time I was in, and asked her to check the chart and also call your office to confirm that I was supposed to get it every six weeks, not every three.

She checked the chart, and I had gotten zometa three weeks before. In fact, I had gotten it twice in a row, which is probably why I had the severe bone pain a few weeks ago that I told you about.

She called your office, and I overheard the conversation, but all she did was tell whomever answered that I said I wasn't supposed to get zometa that day. She did not ask them to check with you, and I don't believe they did.

So my first question is: How often AM I supposed to receive zometa? Dr. L had me getting it every six weeks, and I assumed that we were continuing with that schedule.

Second problem:
My nurse. We've talked about why I need to have the same nurse each time I go in for treatment, and I believe that you requested that Moire handle my treatment. Moire was there, but the treatment center did not assign me to her.

I can understand that the treatment center feels it makes their job more difficult to honor requests like this, but I would appreciate it if you would speak to them directly and explain that you want me to have the same nurse every time I come in, unless that nurse is not working that day.

This is a medical necessity for me. My anxiety is going through the roof when I am in for treatment. When I have the same nurse, and we have a chance to develop a relationship, then I feel safe and can relax during treatment.

Third problem:
The treatment center was extremely busy, and the nurses were run off their feet and harried. Every chair was taken, and I waited a long time before going back for treatment and then an extremely long time in the chair.

Please suggest a time that would be less busy. Again, this kind of situation makes me very anxious, and it leads to mistakes. Would early Thursday morning be a better time for me to come in? I am perfectly willing to do that.

The time thing: Last time, the person who scheduled me said she could only get me in to see you at 12:40 and in the treatment center at 3, which meant a long wait in between. She did suggest that I go to the treatment center early, in the hopes that they could get me back earlier if I was there.

So I sat and waited in the waiting room at the treatment center for almost two hours after checking in, and did not go back until 3. Then, the pharmacy somehow lost my orders and did not mix up my drugs, so I sat in the chair for another hour before we actually started the drugs.

I am still not sure that the nurses did the double-check on both of my drugs, I believe they only did the first one, the Herceptin.

Then, when my nurse started the second drug, Avastin, which runs for half an hour, she mistakenly did not switch the pump over from the saline, so I sat and received saline for half an hour. She didn't realize her mistake until the pump beeped, so I had to sit there for another half an hour to get the Avastin. She felt really badly, and I wasn't mad at her--it was a result of how busy everyone was.

Total wasted time: 3 1/2 hours.

I was completely wrung out by the end of the day.

SUMMARY:
--Please confirm my treatment schedule for zometa, and put it in my chart.
--Please discuss my needs with the treatment center. I don't care so much which nurse I get, although I really like Moire, but I need the same nurse every time.
--Please suggest a calmer time for me to come in for treatment and have my next couple of treatment appointments made at that time. Early Thursday would work best for me of the three days you are there, but I am also willing to come in Friday afternoons.

I will call you a bit later to discuss all of this, but I thought it was easier to put it in writing since there is a lot of info here. '

Thanks. I really like having you as my doctor, but I cannot deal with the situation in the treatment center. It is out of control.

Jeanne

My doctor--who I really like--discussed my concerns with the person who is in charge of the treatment center, and then we talked about it.

I then had a very cordial phone conversation with the head of the treatment center, and she offered to have my care handled by a team of two or three nurses. I repeated my request for having one nurse assigned to me, unless that nurse was not working on the day I went in. She agreed.

I also decided to go in first thing in the morning, when things will not be so harried, and to take my iPod with me to drown out other people's conversations. This was an issue I didn't bring up with my doctor, but overhearing other people's stressed and anxious conversations increases my own anxiety. So I need the buffer of the iPod.

And on the question of making sure the double-check is done on my drugs, I am taking the advice of my friend Jill, who also has metastatic breast cancer, and I will ask to see the IV bags before they are hung and will check the drug names and doses myself.

So we'll see how things go tomorrow, when I am in for treatment again, at 8 a.m. It will be an adjustment, as I usually sleep till 9 these days, but worth it if I can go in when things are calm and the nurses are not run off their feet.

Read more:

Medical Mistakes—They Will Happen

Chemotherapy Errors

@ Jeanne Sather 2007.

How to Get What You Need

When you have cancer, how do you get what you need from the doctors, nurses, technicians, and others who hold your life in their hands?

The answer is remarkably simple: You ask.

You ask politely, but persistently, and you keep asking until you are satisfied. It really is just that simple, but that doesn't mean that it is all that easy for many of us to do.

It becomes easier once you have trained yourself out of the habit of being a "good patient." Good patients do what the doctor (or nurse or pharmacist or whomever in a white coat) tells them to.

But being a good patient can leave you angry, frustrated, anxious, depressed ... and with no outlet for these feelings (other than the friends and family who may listen to you rant, but THEY can't fix things). Bottled up negative emotions can hurt your health.

And being a "good patient" can kill you.

I have a story to tell that illustrates what I'm talking about, and it's a story with a happy ending for a change, but I'll leave that for tomorrow. I need to round up all my pets, pop out my contacts, and head to bed.

@ Jeanne Sather 2007.

Working America: The Health Care Hustle

The Working America Web site has collected almost 700 health insurance horror stories from people around the country. Not all of these are people with cancer, of course, but the stories illustrate how universal these problems are.

Warning: these stories are heartbreaking.

Health Care Hustle

Reading at UW Bookstore, Friday, March 30

I'll be doing a reading this Friday night, March 30, at the University of Washington Bookstore with a group of adult students from my nonfiction writing class at the UW Extension.

About 10 people will read a variety of nonfiction pieces--everything from "Dirt" to my own "Fifteen Phone Calls," which is from my blog.

The reading starts at 7 p.m. and is open to the public. We will be in the fireplace area, near the bookstore café.

If you live in the Seattle area, please come and join us.

E-Mail From John Edwards

OK, this one is funny. I sent an e-mail to John Edwards' campaign over the weekend, asking that it be forwarded to Elizabeth Edwards.

My e-mail said essentially the same thing as my post about Rush Limbaugh.

So what do I find in my in box today? An e-mail from John Edwards (well, supposedly from him, but you don't think he writes his own e-mails, do you?) about GLOBAL WARMING. So not my issue.

I immediately went to the campaign Web site and opted out of future e-mails from the candidate.

Last election cycle, the Kerry-Edwards campaign somehow got my e-mail address and I was receiving a minimum of one e-mail a day from the candidates. All of them urgent, of course. Most of them asking for money. I e-mailed them back and told them if they sent me one more e-mail, they would lose my vote.

Worked like a charm. I was off the spam list as of that day.

Is too much to ask that SOMEONE at the campaign reads incoming e-mails and doesn't just capture the e-mail addresses for political spam? Who am I kidding? Of course it is.

ABC News: Shame on You

It's going to be a big weekend for outrage.

Here's the letter I e-mailed to ABC News after reading its story about Elizabeth Edwards' prognosis following her breast cancer recurrence.

Your story on Elizabeth Edwards' cancer recurrence was extremely irresponsible.

This is the story I'm talking about:
Elizabeth Edwards Enters Second Cancer Fight

And this is the section:
According to the American Cancer Society, there are no reliable statistics on the survival of women with recurrent stage IV breast cancer.

However, women with an initial diagnosis of stage IV breast cancer have a five-year survival rate of between 18 and 20 percent. This means that for every five women who have stage IV breast cancer, only one survives after five years.

At seven years, the survival rate for these women drops to 11 percent.

First, THERE IS recent research on how long women with metastatic breast cancer are living, it was done at MD Anderson in Texas. If I recall it correctly, the study found that more than 40 percent of women with metastatic disease were living five years from the time of the metastases. Older data shows that women typically lived two to three years from the time of the recurrence.

A simple Google search would have turned up this information:
Is Breast Cancer Survival Improving?

Second, having said there is no reliable data, your story then gives data for a COMPLETELY DIFFERENT scenario: women whose cancer is stage IV at the time of diagnosis.

That, clearly, is not Ms. Edwards' situation, and to use this data in a story about her will leave readers with the idea that she has only a one in five chance of living five years--when her chances are much better than that.

Shame on you.

Jeanne Sather
Diagnosed with breast cancer in 1998
Local recurrence in 1999
Cancer metastasized to the bones in 2001
Still alive, writing and teaching and basically raising hell

A Footnote: The best story I've seen on Elizabeth Edwards is this one from Reuters.
(Disclosure: I used to work for Reuters, so I may be slightly biased, but Reuters does an excellent job of making sure its stories are accurate and not overly sensational.)

Elizabeth Edwards diagnosis not a death sentence

@ Jeanne Sather 2007.

Rush Limbaugh and Elizabeth Edwards

Rush does it again.

There is no “right way” or “wrong way” to deal with a cancer diagnosis.

To announce that the Edwardses should be turning to religion at a time like this, as Limbaugh did—that is [expletive deleted].

Elizabeth Edwards gets to decide what she wants to do, and she and her husband get to decide, on their own, as a couple, if they want to continue with the political campaign.

If nothing else, E. Edwards now has an opportunity to show the world what women with stage IV cancer are capable of—and it’s more than just sitting around waiting to die!

From one cancer patient to another, I hope she has the strength to spit in Limbaugh’s eye.

The Face of Cancer in the Morning

Saturday morning in Seattle. It's raining, and cold. Damp, get-in-your-bones cold. I've neglected my dog, and he needs a walk, first thing, before I get too tired and skip another day.

But first, I'm drawn to the computer and my blog. This thing is addictive. I check my stats, to see how many people are reading me and where they came from. I check gmail, to see who's writing to me. This is a good reason to get out of bed.

And I muse over my aborted battle with the governor. I really wanted to take her on. But apparently the issue is moot, so there is no point. But the irony of the governor, a breast cancer survivor herself, not wanting the WSHIP bill to have the emergency clause that would help me (and others coming up behind me, I'm not alone) ...

I had written a piece called "Going Mano a Mano With the Governor," that compared the two of us in all sorts of ways--age (60, her; 52, me), education (law degree, her; two master's degrees, me), health insurance coverage, cancer status, and so on. I thought it was a great piece, but I guess I won't post it now.

So back to that cancer face. When I first wake up, I tend to give myself a long stare in the mirror, and this is what I see: pale greenish skin, pale purplish lips, thin, bed-head hair, invisible eyebrows, and lots of stiff, tight joints.

What a picture.

The pallor is caused by the chemo drug, cytoxan (and the Seattle weather--no real sun yet this time of year). The invisible eyebrows and thin hair, ditto. And the stiff, sore body is part getting older and, a bigger part, the result of all the chemo that I have had, and the fact that I have bone mets--little cancer tumors just sitting here and there throughout my bones, waiting.

Ugly little beasts. I don't even know where most of them are, or how many of them there are. Some things I just don't need to know.

We keep an eye on them with regular PET scans, and as long as they are relatively quiet, that's fine. Keep taking the drugs, keep doing the scans, and doing my best to live my life in spite of it all.

That greenish, purplish face is cured by the judicious application of makeup: I draw in eyebrows, so I don't look so naked, and always wear lipstick when I go out. Exercise, the occasional sauna, and massage (I'm getting one today) help with the stiffness and the bone pain.

The amazing thing is, when I pull myself together, add a little warpaint, and go out to face the world, no one has any idea that I have advanced cancer: And that's the way I like it.

@ Jeanne Sather 2007.