The Assertive Cancer Patient

A Big 'Duh!' for This Headline

A big 'duh!' for this headline: Most forgo buying own U.S. health insurance

Reuters wire service reported recently that nine out of 10 Americans who tried to buy their own health insurance failed, "either because the price was too steep or because they were denied coverage due to a current medical problem."

This report is not news to anyone living with cancer or another chronic illness. Getting and keeping health insurance (and then getting our insurance to pay the bills) is one of the biggest problems facing people living with cancer.

Read it: Most forgo buying own U.S. health insurance

I've been living with cancer for eight years now, and have managed to keep health insurance throughout that time. That doesn't mean it's been easy, my illness and the cost of treatment and insurance have brought me to the brink of bankruptcy twice. My medical insurance, through a state "high risk pool" in Washington state, costs me about $12,000/year at present, and I'm due to hit my lifetime max of $1 million in about a year and a half.

I figure I'll start dealing with that drama in about six months or so.

@ Jeanne Sather 2006

Doctors

Just a thought: It is not my intention to encourage an adversarial relationship between cancer patients and their doctors or health-care teams.

My goal is exactly the opposite: Cancer patients should feel that their doctors and other medical professionals are listening to them and are on their side.

I hope this blog will help you, if you are a cancer patient, communicate so that your needs are met.

Why Be Assertive?

Seattle lawyer Gloria Nagler says that when she was first told she had endometrial cancer she was “totally passive.”

This is a lawyer who at that time (four years ago) had spent more than 17 years appearing in court, speaking in public, and being very assertive on behalf of her clients. Even so, when told she had cancer, she was unable to assert herself. I think most of us feel that way at first. (I did.) Gloria says she was passive because she was shocked by the news and afraid.

“It never occurred to me to check around, “ she says. “My surgeon was a general surgeon, not a cancer surgeon, or even better, a surgeon specializing in gynecological cancer surgery. That cost me a second surgery.

“It’s done. it’s past. I didn’t sue.”

Gloria’s first surgeon removed the cancer, and told her she was cured, but the doctor had not removed the lymph nodes. So when Gloria did consult a gynecological cancer specialist, she was told she would need a second major surgery to remove the lymph nodes because without them there was no way to “stage” her cancer and tell her how far it had progressed.

“It was appalling,” Gloria says. “I paid the price of a whole second surgery. From then on I was not passive.”

Talking to Doctors: One Cancer Patient’s Experience

Seattle lawyer Gloria Nagler was diagnosed four years ago with endometrial cancer. She had a PAP smear, which was abnormal, and then a D&C procedure, and her doctor called her to tell her what was wrong.

On the phone, Gloria says, her doctor said, “Well, your vagina is OK. And your cervix was clean. …”

Obviously, the doctor was having trouble giving Gloria the bad news. (And I wonder if she was going to work her way through all of Gloria’s healthy body parts before she got to the one that was diseased.)

At that point, Gloria cut her off and asked, “Do I have cancer?” And the doctor responded “yes.”

Gloria says, “She was uncomfortable giving bad news. She should have gone and practiced it somewhere.”

I had a similar experience when I was first told that I had breast cancer. From that experience, the stories of other cancer patients, and research and writing I’ve done over the past few years, I would have to say that this kind of experience is very, very common.

Conclusion? Doctors need to learn to give bad news. And to give it in a way that does not cause their patients unnecessary additional distress.

E-Mail From a Cancer Nurse

I received this e-mail from Juanita McKenzie of Corona, California:

Below is a copy of an e-mail I received today from my best friend. Her name is Dona Freed, she works for Pacific Cancer Medical Center, Inc. in Anaheim, Calif. It is a cancer and hematology treatment center.

Dona is very dedicated and knows all of her patients by their first names. Dona is on the front line everyday with her patients as they fight the cancers that threaten their very lives. It's an emotional and stressful job which she goes to each morning. But she wouldn't have it any other way. She loves her job, actually she loves the patients she works with. For her to experience first hand how these cuts in medical funding are affecting the real people of this country--it breaks my heart to say the least.

I think her words are best describing the situation she sees everyday. How can this be fixed? What do we, as voting citizens of this country, do to get this vital funding back where it is desperately needed? Do we have to wait until George Bush is out of office? Your input and advice is greatly needed in this issue. Dona's e-mail begins after the asterisks.

** It is so heartbreaking, we have had to send patients home without their treatment because of the cuts. It makes me sick inside that here in America somebody that has worked their whole life and paid taxes into Medicare that Medicare will not continue to cover their treatment. Not only is this denying their actual right to live but it is letting the government choose when their life will end.

This shit has gotten so out of hand, Juanita, it's like the devil himself is cutting off any hope or chance for recovery. The medical field and its advances, hell, almost every surgical procedure is "out patient" now. You name it and somehow it can be fixed or transplanted. But if you have cancer and there are eight patients in need of IVGG, four will get it. The other four have to hope that one of the first four don't need it any more or worse. We are allowed to give X amount of patients an IVGG treatment in one month.

How do you pick? How can this really be happening ? Millions of dollars in cuts have caused this.
I have written everyone, please help. Dona**

The Assertive Cancer Patient: Knows About Workplace Rights

When I was first diagnosed with cancer, I had no idea that people who were in cancer treatment could, or did, work. I was surprised when my doctors told me that I could continue to work with a few weeks off after surgery and a few days off after each chemotherapy treatment.

You may want to continue to work, or you may have no choice in the matter, as I didn’t, since I am a single parent raising two sons. But there are obstacles—including employers. I was fired while in cancer treatment by the health and fitness Web site for which I first wrote about my cancer in a weekly series called “Jeanne’s Diary.”

I also did not know, until I was fired, that people with cancer are protected by the Americans With Disabilities Act. The act provides protections for both cancer patients and cancer survivors. These protections include "reasonable accommodation," such as working from home, to allow you to continue to work if you want to.

Why Be an Assertive Cancer Patient?

There are at least three good reasons to be an assertive cancer patient:
* You will get better care.
* You will probably live longer.
* You will feel better about yourself and your illness.

This Blog Is for You
There is nothing like being stripped of your own clothing (and identity) and dressed in a backless cotton hospital gown to make the most self-confident among us feel like children. Suddenly, we find ourselves embarrassingly dependent on our doctors and their opinions of us.

Even people who are comfortably assertive in various aspects of daily life typically do not bring this same assertive style with them into a medical setting. There are a number of reasons for this, including the strong emotions that come with the diagnosis of a serious, potentially life-threatening illness, and our socialization to be “good patients.” In addition, the medical world is an alien culture for most of us, with its own language, hierarchy, and rules--one that takes some getting used to.

I am writing this blog to help people with cancer who, like me, realize that if there was ever a time to be assertive, it is when faced with cancer. Even if you are mostly positive and self-confident, you will probably find these skills deserting you when you enter a doctor’s office.

Many people who do NOT see themselves as assertive will realize that they need these skills when faced with a cancer diagnosis. Being assertive does not mean you are brash or demanding, and it certainly doesn’t mean you are rude or aggressive. Rather, it means that you are calm, positive, and in control of your life and your health.

Whether you are newly diagnosed or have been living with cancer for some time, I hope this blog will help you take the best possible care of yourself and get the best possible care from your health-care team as well.

Read more:

You Will Get Better Care

You Will Probably Live Longer

You Will Feel Better About Yourself and Your Illness

@ Jeanne Sather 2006

Intro to Jeanne's Diary

I began writing “Jeanne’s Diary” for the OnHealth.com Web site in the fall of 1998, just a few weeks after surgery to remove my right breast and shortly before beginning chemotherapy.

In the beginning, I wrote it as a way to make money. I needed to support myself and my children during my cancer treatment and recovery, and the opportunity was there. I’m a writer, it’s my life, so why not?

The diary quickly became so much more.

For me, it was therapy. I wrote each chapter “in the moment”–-in the too quiet hours of the early morning when it seemed the whole world was asleep but me, or whenever I was overwhelmed. I pounded it out as fast as I could type.

I wrote about my fear of chemotherapy.

I wrote about insurance problems, going bald (twice!), a young woman in my support group who died, and about my children, who struggled with their fears that I would die.

Then later, I would edit and rewrite, turning it into complete sentences with correct punctuation. I’d give it to my editor and it would go live on the Web site. Once, I dictated a chapter over the phone from the psych ward at the University of Washington Medical Center where I was hospitalized for depression.

For other women with breast cancer, the diary and the attached online bulletin board became a lively support group. Women–-and one lone man with breast cancer--would post their own stories, ask questions about different treatments, and send messages of encouragement and hope.

Then I Was Fired
Then, when I was fired by OnHealth in early 2000, my life and my story became public in a way that I had never anticipated.

I still find it almost impossible to write about. If you want to read what happened, here’s the link to the page one story in the Seattle Post-Intelligencer: Blindsided by disease and life, she fights to survive

TV interviews followed. The wire services picked up the story, and OnHealth was bombarded with phone calls and e-mails.

This part of my story has a happy ending: I settled with OnHealth and within two weeks of the settlement, I had a better job at another health and fitness Web site.

Overall, the publicity was a good thing, but sometimes I feel a bit funny about the “breast cancer poster child” aspect of it. Am I now expected to be a model cancer patient? To never be afraid or discouraged?

It’s also humbling to find out that so many people care.

The diary covers my cancer treatment in 1998 and 1999.

A couple of years later, on New Year's Eve, December 31, 2001, I found out that my cancer had returned, this time metastasizing to my bones. One tumor broke my right arm. Dozens more were scattered throughout my bones, in the spine, the pelvis, the ribs … It gives me the willies to write about it.

I have been in continuous cancer treatment ever since. And, almost five years later, I am still alive, and life is mostly good. This blog comes out of my experiences living with cancer day by day.

@ Jeanne Sather 2006

Chapter 1: Life in the "Chemo Room"

How many ways can you say scared? Terrified, apprehensive, afraid, nervous, freaked out--just plain scared.

For the two months since my breast cancer diagnosis, I've been riding an emotional roller coaster over the prospect of undergoing chemotherapy. Chemotherapy. You know, the treatment where they pump you full of poisons to kill cancer cells and your hair falls out and you vomit for days at a time and the cure is nearly as deadly as the disease. That treatment.

I had a mastectomy about one month ago, and the surgery was not nearly as frightening to me as the thought of chemo. I was most upset by the thought of losing my hair--a billboard that shouts "I have cancer"--and the fatigue. "How fatigued?" I asked endlessly. "Will I be able to work? Play with my kids? Keep things running at home?"

My lymph nodes were negative, which means the cancer probably hadn't spread beyond the breast. I wanted to just walk away after the mastectomy and be done with it. Take my chances. Without chemo, those chances are 30 percent that the cancer will reoccur--and 70 percent that it won't. With chemo that number increases to 85 percent. But it's all numbers. There are no guarantees.

Week One in the "Chemo Room"
The "chemo room" at the University of Washington Medical Center in Seattle is not a friendly place. Someone has made an effort to make it seem friendly: Metallic stars and chains of paper cranes hang from the ceiling, and the six reclining chairs are pink--a friendly color--but it is not a friendly place.

Before I got there, my mental image of the place was of a group of people sitting knee-to-knee in a circle, IVs dripping powerful drugs into our arms as we shared our life stories.

It's not like that at all. Each patient is isolated behind half-drawn curtains. The six pink chairs are all full, but no one makes eye contact with me. I manage to catch one woman's eye and smile, but she turns away without responding. Everyone looks pretty healthy; several people are wearing hats, although they seem to have hair under them.

It's a private place.

My nurse, Ann, gets me settled in a chair with my friend Elaine sitting to one side and asks about my surgery: "What kind of surgery? Which side?" (Jeez, doesn't the whole world know I lost my right breast on October 12, 1998? My own nurse doesn't know?)

"Right," I say, "I had a mastectomy on the right side," and Ann wraps my left arm in a warm towel to bring up the veins. While we wait, Ann lays out a tray of needles, tubes, plastic bags of saline solution and anti-nausea medication, and then a syringe of bright rosy-red doxorubicin, my chemotherapy drug.

A needle is punched into a vein in the back of my left hand (ouch!), and carefully checked. If the doxorubicin leaks into the tissues, it can cause tissue damage like a burn, I'm warned. First comes the saline, just to make sure everything is working, then the anti-nausea drugs, then finally, the syringe of doxorubicin, all through the same needle.

Ann gives this slowly, with pauses to run saline through the line. She talks nonstop throughout the 45 minutes it takes to give me the drugs. Calmly and cheerfully, she runs down the list of possible side effects. I have a printed sheet in my hand so I can follow along.

• Nausea and/or vomiting . . ."We'll give you pills to take at home". . .

• Red, pink, or orange urine, tears, or sweat. . .

• Hair loss (eyebrows, eyelashes, body hair, all of it). . .

• Mouth sores. . ."You won't have that one this week". . .

• Heart damage. . .

• Sore palms or soles of the feet. . ."Let's worry about that one later."

I try to pay attention and ask intelligent questions, but my eyes won't focus properly.

Finally, at 4:15 p.m., I'm done. I walk out, feeling a little spacey and lightheaded, but otherwise fine. I head to the pharmacy to pick up more anti-nausea drugs to take at home. (A few bad moments here when I hear about the side effects of one of those drugs: The pharmacist warns me that the drug Compazine can cause muscle spasms, sometimes so intense that they require other drugs to unlock the muscles so you can move. She's kidding, right?)

So far, though, it's anticlimactic. All that pink stuff went into my arm, but so what? I feel almost normal.

Waiting for the Drug
Elaine drops me at home, and I go in and wait for the drug to hit. My stomach is a little queasy, I'm not sure if it's the chemo or nerves. I have some soup and talk on the phone with a friend who has just heard about my cancer. She is more upset than I am.

I'm ignoring my kids. They don't seem quite real. At 7 p.m., I take my medicine, drink a glass of milk, pop out my contacts, and get into bed with a copy of Newsweek.

At 7:30, another friend, Pat, arrives to spend the night. We talk and fold laundry. I cuddle Robin, my younger son, who is crying over an argument with his brother, Akira.

At 9 p.m., I pee orange urine and get back into bed. My head hurts. My tears are not pink.

10:30, still awake. Head still hurts. No nausea, thank god.

Midnight. Still awake. I get up and read my cheat-sheet: If you are receiving chemotherapy and experience any of the following problems, call the clinic immediately. "Headaches," it says. I call. "Take Tylenol," the resident says. The only Tylenol in the house is the junior grape variety. I chew four chalky tablets and go back to bed.

Saturday. Not much sleep, but I feel OK. I clean house with my bird, Spot, on my shoulder, playing with my earring as always, while Pat takes the kids to Japanese class and does the grocery shopping. I spend the afternoon in bed, reading, still waiting for the drug to hit me.

Sunday. It hits. I feel rotten. My face is pale and puffy. I go out for a short walk, then back home and into bed. I'm tired and queasy, as if I have a bad case of flu. I try to be a good parent and play Scrabble with Robin, but after four turns, I'm done. Back to bed. The kids eat dinner, I eat crackers in bed. What a day.

Monday morning. My bird is dead. He died during the night. I have no idea why. I cry. Suddenly, I'd like to crawl back into bed and stay there for the next three months. Instead, I go to work and make light of the whole thing to my co-workers.

Tuesday. I feel a bit queasy at the smell of coffee, or when a bus goes by, belching diesel. Otherwise, I'm fine. Ready to go back in three more days and do it again.

@ Jeanne Sather 2006

Chapter 2: The Diagnosis

I walk into my second chemo treatment on Friday feeling terrible--I have a cold, got almost no sleep the past two nights, and my head is pounding so badly my eyes won't focus. I am clutching a long list of questions in my hand to ask Ann, my nurse.

I walk out an hour later feeling tremendous. Headache gone, I'm jazzed--getting wired is one side effect, whether of the chemo drug, doxorubicin, or of the anti-nausea drugs, I'm not sure. I go home, send the kids off to friends' houses for the night, and head out to a Society of Professional Journalists event with a couple of friends.

I have fun. There is a sense of unreality buried down deep, but on the surface I'm having a great time, talking and laughing and being with people I like.

But in the back of my mind always are the questions:

I had a bad headache after my first chemo, what can I do?

Ann says my choices are to change the anti-nausea drugs or to take Tylenol before the chemo to head off the headache. The anti-nausea drugs are working for me, so I don't want to mess with them. I opt for two Tylenol.

Can I drink wine during the holidays?

A glass or two of wine is fine, Ann says.

I'm tired from my cold. Can I take sleeping pills?

We agree that sleep is important, and Ann calls in a prescription for Ambien. I've never taken sleeping pills before my cancer, but I love this stuff. Instead of lying awake for hours with wheels whirling in my head, it's a long, slow slide into dreamless sleep.

What are the weekly blood draws for--what exactly are we checking?

Ann gives me a chart that shows the blood factors measured each week and fills in my counts from the blood draw I had an hour ago. The chart shows my white blood cell counts, my red blood cells, and my platelets, which aid clotting. At week two, everything is fine. My white cell counts are actually up, probably from fighting the cold.

I feel quietly horrified at the thought of watching my blood cells killed off, week by week, but the chart lets me know what's going on. And who knows, maybe I can talk those cells into staying strong, staying with me.

A Warning Signal
The day after my chemo, Saturday, I decide the house is too quiet and lonely without my bird Spot, who died last week. I know it's too soon to buy another bird. So I head out to the pet store and come back an hour later with a bowl of goldfish.

I buy a classic, round bowl, three fish--Spot, Fin, and Feather--and a chubby black and orange snail my son Akira dubs Slow Poke. I get a little castle for the fish to swim through, live plants, and lots of glass marbles for the bottom of the bowl.

By Wednesday, my cold has turned into a sinus infection. I pull out my sheet of instructions. "Call if you have an infection." It's the day before Thanksgiving, and the cancer center is frantic. The nurse asks if I have a GP I can go to for something for my sinus infection.

"Nooo," I respond, thinking there is no way I'm going to let anyone but my oncologist treat me for anything, no matter how small. She'll get back to me, she says, and calls back later with a prescription for an antibiotic.

Now I'm taking: doxorubicin, my chemo drug; zofran and decadron, two anti-nausea drugs I take through an IV; Axid and Compazine, two more anti-nausea drugs I take by mouth; the sleeping pills; the Tylenol for headaches; and now the antibiotic Zithromax for the sinus infection. It's a drug store around here. I line up the bottles and look at them for a long time.

The cold, and the sinus infection that followed, was a warning. My blood counts were not low enough after only two rounds of chemo for the infection to be a serious concern, but I need to avoid germs in the weeks to come as my ability to fight infection declines. Later on, a simple infection could kill me.

I open door knobs with my sleeve, use my own pen to sign checks at the grocery store, wear yellow rubber gloves to wash dishes, and look at my children with newly suspicious eyes: What germs are they incubating to pass on to me?

I have my own hand towel and drinking cup in the bathroom. I buy extra-soft toothbrushes to protect my gums.

How I Got Here
How did this happen to me?

Well, there were no signs or symptoms. I never felt a lump. My doctor, a Seattle ob/gyn, didn't feel a lump when I went in for my annual exam last August. But she did recommend that I have a mammogram.

I was not inclined to agree. I was busy. I'd had a baseline mammogram at 40, and I wasn't convinced I needed another one at 43. I'd read the conflicting recommendations on whether mammograms were necessary--read "cost-effective"--for a woman in her 40s. And I had no risk factors. A vegetarian since age 16, I ate reasonably well, exercised when I could, and had no family history of breast cancer. But my doctor persisted, and I agreed, although I left her office thinking she was one pushy broad.

I go for my mammogram at a clinic down the hall. I don't really mind mammograms. All that squeezing and pulling isn't pleasant, but I don't really mind it.

Then, a few days later, there's a message on my answering machine: "Please call us about your mammogram." When I call back before 5 p.m. that same day, the woman who'd left the message isn't there, and I am told no one else could tell me why she'd called.

I spend a sleepless night.

The next day, I'm told that the clinic wants to do some more mammograms, close-ups, to check some calcifications. "Fine," I say. I try to get more information in the few days before the next mammogram, but the people I talk to are vague. Calcifications are just clumps of calcium in the breast--sometimes a problem and sometimes not. No one wants to use the word "cancer" with me.

I have the follow-up mammograms and read whatever I can find in the waiting room about calcifications. I learn a new term, DCIS, or ductal carcinoma in situ. I read about DCIS, which is really confusing. Some sources call it "precancer," so why are we so worried? Some sources say it's fine to do nothing, just watch it closely to catch any break-out from the milk ducts where it's contained.

But the doctors at my clinic recommend a biopsy of the calcifications. Confused, worried, caught in a whirlwind, I agree. They give me a sheet explaining the procedure, which is a stereotactic biopsy, also called a mammogram-guided core needle biopsy.

Let me tell you, that sheet does not explain the procedure. And it in no way prepares me for having a dozen holes punched into my flattened breast with a device just like a hole punch. It's awful. I thought a biopsy was a little skinny needle that took a few cells. The tissue they take out looks like 12 little worms. I feel really sick.

I ask if all this punching won't release cancer cells into my bloodstream. "That's a good question," responds the doctor, sounding surprised that I would ask such a thing. She goes on to give me a "yes, but" answer that I don't really understand.

I'm scheduled to come back in a day or two to get my test results and talk to a surgeon. Why did they schedule me to see a surgeon before we even have the test results? I ask myself that question, but I'm too overwhelmed to ask at the clinic.

When I show up to learn the test results, the woman who checks me in says I'm scheduled for an ultrasound. An ultrasound? I just came in to get my test results, I reply, no one told me anything about an ultrasound.

"Is it OK to do the ultrasound?" she responds.

"Well, yes, of course, but no one told me," I say. So we do the ultrasound, and a second biopsy, with a skinny needle this time. I'm at the clinic for an hour before I see the surgeon, and so far no one has told me the results of the earlier test. However, no one makes eye contact, a bad sign.

When I finally see the surgeon, she tells me that I have extensive DCIS. Plus I have a lump--a tumor--which didn't show up on the mammogram but was found during all the follow-up testing and has now been submitted for testing. I'll have to wait till next week for the results. Still, she says, I'll probably require a mastectomy.

I don't like this clinic, and I'm not ready to accept the recommendation that I have a mastectomy. I schedule an appointment with a well-known surgeon at the PolyClinic in Seattle for a second opinion and with the Cancer Center at the University of Washington Medical Center for a third opinion.

@ Jeanne Sather 2006