The Assertive Cancer Patient

Chapter 9: The Insurance Fiasco

When the medical bills and insurance statements first started coming in the mail, I'd open them and cry. Later, as a trickle became a flood, I didn't even open them, I just stuck them in a red file folder that grew and grew until it was three inches thick.

The first piece of mail that made me cry was a statement from my insurance company informing me they wouldn't pay any part of a $1,700 bill. On the bottom of the statement they included an incomprehensible explanation of their position, but I knew it was an error. I also knew it was going to take phone calls and letters to both the insurance company and the health-care provider to straighten it out. Who had the energy? Not me.

As the statements continued to come in, I was befuddled by bills from providers I'd never heard of, charges that didn't add up, errors in the calculation of my deductible, and--always--codes and cryptic explanations that I couldn't understand.

My favorite is "Payment reduced per sanctioning policy." What's a sanctioning policy? My health insurance company, United Healthcare of Minnesota, is sanctioning me for spending too much money?

To the Rescue
Help arrived in the person of Kelly Calden, whom I found in the Yellow Pages under "Insurance Claims Processing-Medical." Kelly came to my house and didn't even flinch when she saw the stack of unopened bills and statements. "Some people give me mounds of envelopes in laundry baskets," she says. "Some people have not dealt with the medical bills for two or three years."

First, she sorted out the mess, matching statements from providers with explanations of benefits from my insurance company. She threw away duplicates, filled out forms and sent in the ones that hadn't been submitted to my insurance company. Then, she checked for errors. She found several in the calculation of deductibles, and asked my insurance company to correct them and recalculate payments to the doctors and the hospital. So far, she has saved me $630. And we're not done.

Kelly has called or written to all of my health-care providers and has a contact at each one. She's tracking everything, following up regularly by phone or fax. "I let them know we're working on it and that we're not deadbeats," she says. "It's all very positive and very nice."

If a claim is denied, she doesn't stop working. "I don't accept the first denial," she says. "I question it on the phone and if I'm not satisfied I fax a note or letter asking for a response in writing."

What I get is a list of bills to pay, complete with addressed, stamped envelopes. I also get a clear, brief status report. Kelly charges $25 an hour, and so far her services have cost me $150. She expects to put in two to three hours a month handling my claims over the next couple of months.

What'll It Be: Nausea or Fatigue?
For me, Kelly is a bargain. I barely have the energy to eat dinner, let alone sort through the insurance. My doctors warned me before the chemo started that the two biggest side effects were likely to be nausea and fatigue. I've been lucky with the nausea--I haven't thrown up once.

But fatigue, a fancy word for being tired all the time, I understand. Before I started chemo, I wanted someone to quantify fatigue. "How tired?" I asked again and again in the early weeks of my care. "Give me numbers, give me hours-per-day. Will I be able to work? Play with my kids? Keep things running at home?"

And, of course, I got the standard answer: "It varies from person to person." Which is no answer at all.

A couple tales of deep fatigue:

The Monday after my second chemo, I fell apart in public. I worked from 9 a.m. to 1 p.m., ran a couple of errands, then went to my son Robin's school for a 2:30 p.m. parent 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.

Then, on Christmas Eve, the day of my sixth chemo, I was too tired to open my gifts. I lay on the couch and watched the kids open theirs and left mine till morning. The fatigue can come on very suddenly. And it's hard to predict; some weeks have been much easier than others.

In between, there are days when I feel pretty normal. I have energy and enthusiasm and joy. Those moments are treasures: As trite as it sounds, the sky is bluer; my love for my children and for life is more intense than ever. Paradoxically, rest is not the only thing, or even the best thing, for dealing with fatigue. Exercise is. Just a walk outside in the fresh air, even 15 minutes, can work wonders. One of my nurses tells me, "Exercise fights fatigue, right down to the cellular level." I don't entirely understand that, but it sure seems to be true.

Waking Up
It's been a week since my six-day hospital stay for depression. The antidepressants have kicked in and I feel much better. I'm still not sleeping much, and I have trouble writing. But I feel hopeful and have more energy, despite the chemo fatigue. I can talk to people, and I have an appetite again. And I'm planning a party to celebrate the end of my chemo, just three weeks from now.

I'll continue my treatment for depression past the end of the chemo, and my psychiatrist has suggested light therapy and an additional session of yoga a week. I like the idea of adding complementary therapies to the conventional medical approach, which seems to be drugs, drugs and more drugs.

@ Jeanne Sather 2006

Chapter 10: Complementary Treatments

Knowing I have only two chemotherapy treatments left, I feel lighter, at times almost euphoric. I find myself making plans for "after chemo"--going back to work, taking weekend trips with my kids, planning a party to thank all the friends who helped me through this.

I look around my tiny yard, now soggy and covered with dead leaves and fallen branches, and I can't wait for spring so I can start cleaning it up and planting--sweet peas, snow peas, tomatoes, carrots, maybe garlic. My depression has lifted. My only problem during the last week or two has been sleeplessness. Some nights I'm awake all night; others I sleep well, but can't get up in the morning. It's all part of trying to adjust the dose on my sleeping pills.

I know some people with cancer turn away from conventional medical treatment, like my pills, and choose alternative treatments alone. And some swear alternative treatments do more than treat the symptoms of cancer, although there's little scientific evidence of that. Remember a few years ago when people traveled to Mexico to get something called laetrile, made from peach pits? And more recently it's been shark cartilage, which did no good at all for 58 cancer patients in a recent study.

One reader of my diary when it appeared on the OnHealth Web site sent me an e-mail about her experience going to a naturopath instead of opting for the surgery, chemotherapy and radiation her conventional physician recommended. After three months of eating raw fruits and vegetables, drinking lots of juices and herb teas, taking high doses of certain vitamins and undergoing cleansing treatments, she says she is cancer-free.

Yoga for Comfort
But most cancer patients, including me, stick to conventional treatments. About half of us look for additional therapies to complement that treatment. We're not expecting yoga or aromatherapy to cure our disease, but we do hope they will relieve our nausea, make us more comfortable or improve our state of mind.

I always got my doctor's approval before I tried any complementary therapy, and usually, he gave it quite willingly. But despite greater acceptance of complementary therapies by medical doctors, many of them won't suggest them to you first, and chances are they won't be able to tell you much about them if you ask. Most of the therapies aren’t backed up by the kind of scientific studies doctors respect or published in the kinds of journals doctors recognize.

There are a few exceptions. Acupuncture, for example, seems to help fight pain and nausea during chemotherapy, according to an expert panel convened by the National Institutes of Health, a pretty conventional group. But my nausea was well controlled with drugs, so I never tried acupuncture. In fact, when the drugs seemed to work, I stuck with them, instead of searching for the alternatives many other patients have sworn by. Had the circumstances been different, so would have my behavior.

Instead, I set about trying to find out what might help me with the problems I had as I went through a mastectomy, three months of chemotherapy, and a serious depression. Here's what I tried:

Yoga
I started yoga to help my depression, and after four classes I now find myself craving yoga the way I looked forward to a run in my jogging days. I'm sure the yoga helped make my chemo treatments easier. Yoga on the third day after a chemo treatment seems to help me recover faster, yoga in the morning before my Friday-afternoon chemo sends me in to the Cancer Center calm and relaxed, ready to face the needles and IVs.

The experts say yoga, which combines exercise and meditation, can improve overall physical fitness and help with problems like depression and anxiety. And it feels good. After not getting much exercise for months, I need it.

Mind/Body Books and Tapes
I listened to the tape, "The Exceptional Cancer Patient," by Dr. Bernie Siegel, in which the doctor told the stories of cancer patients who had recovered. I listened to the tape over and over, often as I took walks. Sometimes, I just listened for the sound of Dr. Siegel's New York-tinged voice, which I found comforting.

Vitamins
I took extra vitamins--not mega-doses, but more than I had been taking--in an effort to make myself as strong as I could before my mastectomy and chemo. (I embarked on a more rigorous exercise campaign for the same reason.) My friend Pat, who is a massage therapist and knows a lot about vitamins and alternative medicine, suggested the kinds of vitamins I should take, and my oncologist gave his approval. But he told me to stop taking them while I was undergoing chemotherapy.

Did they help make me stronger and better able to make it through the mastectomy? I have no clinical proof, of course. But I think they did. And I figured if the dosages weren't harmful, I might as well try to do everything I could to build myself up.

Full-Spectrum Light
Shortly after my hospitalization for depression, one of the therapists I saw suggested that light therapy might help me. She said the way to get real help from the therapy is to buy a light box and set up a schedule.

I'm ready to try it, but my insurance doesn't cover light boxes, which cost between $200 and $400. Instead, I've been trying a full-spectrum light bulb from the local health food store. I screwed it into a socket in my bedroom and every morning, I flip it on as I do my morning exercises, check my e-mail and get dressed. Not enough watts, says the therapist, so I'm saving up for the light box.

I can't say the light I've got now has made a major difference in my outlook. But it does seem to wake me up faster. If nothing else, I tell myself, it is a really bright light.

Support Group
I just started going two weeks ago, but I love my support group. We have a rule: We can't talk outside the group about what goes on there. But I can say that we talk non-stop and laugh a lot, even about the sad things.

Like yoga, support groups are considered mind/body medicine and an alternative therapy, although conventional doctors suggest them to cancer patients and many hospitals run them.

One study done at Stanford University Medical Center found that breast cancer patients who joined a support group survived for twice as long as those who did not. But I shuddered when I read the numbers: The women in support groups lived an average of 36 months. Then I learned that all of the women in this study had newly diagnosed metastatic breast cancer. That is, these were women who were treated for breast cancer but had a recurrence in another part of the body.

Humor
Despite the old saying, "Laughter is the best medicine," I don't think people really consider the healing power of laughter.

My friends and I giggled for weeks about going "boob shopping" before I made the trip to Nordstrom for a prosthesis. I can't honestly say that our jokes were all that funny, but we laughed a lot. My 8-year-old has a couple of pretty funny jokes of his own about my fake boob.

Here are two more I've heard during my treatment. The first one I heard in my support group:

Many women are afraid of their first mammogram, but there is no need to worry. By taking a few minutes each day for a week preceding the exam to do the following practice exercises, you will be totally prepared for the test. And, best of all, you can do these simple practice exercises right in your own home.

Exercise 1: Open your refrigerator door and insert one breast between the door and the main box. Have one of your strongest friends slam the door shut as hard as possible and lean on the door for good measure. Hold the position for five seconds. Repeat in case the first time wasn't effective enough.

Exercise 2: Visit your garage at 3 a.m. when the temperature of the cement floor is just perfect. Take off all your clothes and lie comfortably on the floor with one breast wedged under the rear tire of the car. Ask a friend to slowly back the car up until your breast is sufficiently flattened and chilled. Turn over and repeat for the other breast.

Exercise 3: Freeze two metal bookends overnight. Strip to the waist. Invite a stranger into the room. Press the bookends against one of your breasts. Smash the bookends together as hard as you can. Set an appointment with the stranger to meet next year and do it again. You are now properly prepared.

And this one was e-mailed to me by a reader:

An old man was awaiting some test results at his doctor's office. The doctor walked in and said, "Mr. Smith I have two pieces of bad news for you. First, I have to inform you that you have cancer."

Mr. Smith said, "That's a rough one. But I guess it couldn't be worse. What else could be wrong?"

The doctor said, "I'm so sorry, but you also have Alzheimer's disease."

Mr. Smith sighed, looked at the floor for a minute, then replied, "Thank God I don't have cancer."

@ Jeanne Sather 2006

Chapter 11: Living With Cancer

The week leading up to my 12th and final chemo treatment has been a doozy. Robin, my younger son, got sick as I was getting my 11th treatment. We saw his doctor, and Robin started taking antibiotics to fight what turned out to be a sinus infection. Two days later, he came down with the chickenpox--five days (so far) of itching, crying, baking soda baths, sleepless nights and lots of cuddling while one thought remains at the top of my mind: "Go ahead, life. Hit me again."

This turns out to be an ill-conceived challenge: Life has taken me up on it. Just as I was settling in to being stranded at home with a contagious kid, my e-mail--my lifeline to the world--stopped working. I kept sending messages. I'd get no replies.

"Nobody loves me," I thought, staring forlornly at my empty inbox. "I'm being shunned. What did I do? I have no mail!" I called my Internet provider, and a support person helped me fix the problem over the phone. Then I downloaded 886 e-mail messages--which turned out to be duplicates of all my incoming messages since July 8. It took an hour to delete my way down to the 20 truly new messages.

What can you do but laugh?

Dregs of the Drugs
What I wanted to do this week was get ready for my last chemo treatment and my monthly appointment with my oncologist. I wanted to prepare a list of questions about my future treatment. And to do that, I wanted to read the section in "Dr. Susan Love's Breast Book" titled "When Cancer Comes Back."

I've avoided that section all through my diagnosis and treatment. I wasn't ready to read it. But now I need to know. The bright side of the chickenpox is I have a lot of time to read and think while up nights with Robin.

I've also dumped out and counted the contents of my top dresser drawer. Twenty-six pill bottles. Some are refills, but I've taken at least 15 drugs during my dance with breast cancer. Painkillers and stool softeners from my surgery, several nausea drugs for the 12 weeks of chemo (I'll take the last of those in the next day or two), medications for depression, and several different sleeping pills.

Starting next week, I should be down to two or three drugs, just the ones I need for depression. I'm thinking I'll build something with the leftover bottles. I want to go back to taking only vitamins. I want to sleep without any help.

Looking Back
It is too soon to write the last word on what breast cancer means to me, or even the next-to-last word. But looking back, I can say cancer made me bold--bold enough to buzz-cut my own head, bold enough to go out in public without a hat. Bold enough to write this diary and put it up on the Web.

Cancer made me brave--brave enough to tell the people I love most that I have cancer, brave enough to face the changes in my body and the possibility of a shorter life, brave enough to say, "I need help, right now." Cancer made my priorities crystal clear, even when so much else was not clear.

Cancer made me laugh. I had to laugh.

And cancer made me want to help other people, and I plan to do that.

Looking Forward
I went to my appointment with my oncologist with a long list of questions, and he patiently answered every one as he examined me.

When can I start taking vitamins again? (Next week.)

When can I have my teeth cleaned? (In a couple of weeks.)

Are these two moles anything to worry about? (No.)

What about the "chemo brain"--my tendency to lose concentration? (That's caused by the steroids used for nausea, not by the chemo itself. It'll take a month to be clear-headed again.)

I didn't have a period in February, does that mean I'm in menopause? (Not necessarily. If it doesn't start within a year, I'll be considered to be in menopause.)

When will I come in for a follow-up? (In three months.)

And then, finally, a question that caused my doctor some concern: What are these pink areas on my skin where my breast used to be? It could be edema, he told me. It could be an inflammation. Or it could be a tumor coming back. Don't worry, he quickly added, that's probably not what it is.

So, I pick up one more prescription: 10 days’ worth of antibiotics, just when I was longing to be drug-free. I'll see my doctor again in a month. Despite his advice I'm a little worried, but I bought myself a greeting card with this message on my way into the hospital: "Worrying does not empty tomorrow of its troubles, it empties today of its strength."

It's already framed and on my desk.

So Long, Chemo Room
The chemo room, when I report for my treatment, is no longer the scary, unfriendly place it was three and a half months ago. Ann, my favorite nurse, gives me my chemo, and we talk about our childhoods. When I'm done, she crowns me with a tiara and takes a Polaroid shot for me to take home. There are hugs and congratulations and thanks all around as I leave.

I learned one scary thing as I was reading Dr. Love's book in preparation for this last treatment and appointment with my oncologist, something that was not clear to me before. If breast cancer recurs in the breast, chances are it can be cured, with about the same survival rate as for the first cancer. But if it metastasizes and spreads throughout the body, in most cases it cannot be cured. The goal of treatment then is to get the cancer into remission--to prolong your life--and many people stay in remission for years. But the word "cured" doesn't appear very often.

Now that I'm thinking really hard about this, I realize I waited a long time to join a support group because I was afraid I would get close to the members, and then one of them would face the return of cancer, and die.

I don't feel that way now. I want a support group to help me through the months and years of tests and waiting to see if my cancer will come back. I think the group will help me live a normal life, although one with new priorities. I'll get more exercise, and do less work. I'll eat a healthier diet, and spend more of my time on ferry rides and fun.

Even so, when a woman walked into my second support group meeting last week and said that her cancer had returned and she thought she was going to die, I was stunned. And I cried for her, as did everyone else.

But here is what has changed in me: Her situation did not make me more afraid for myself. It made me want to do whatever I could for her, to help her. It made me care, so much, what happens to her.

Kathy Mershimer is her name. She was a 32-year-old math teacher and Girl Scout leader when she first felt a lump two years ago. Even after two mastectomies, chemo, radiation, stem-cell transplants and other treatments, her inflammatory breast cancer recurred in January.

The new cancer caused fluid to build up around her lungs, making the simple act of breathing difficult and uncomfortable. Kathy, now 34, wrote this poem while she was in the hospital to have a catheter placed in her chest so she could undergo another series of aggressive chemo treatments. It says what I'm feeling so beautifully.

What I Took for Granted

In all my searching for what's most important
I never dreamed it would be the simple act of breathing
In the moment I relish breath;
In all my worrying about performance
I never dreamed it would be about just surviving
In the moment I relish being alive;
In all my dissatisfaction
I never dreamed it would be about acceptance and surrendering
In the moment I relish the peace of letting go;
In all my pride and independence
I never dreamed it would be about depending on others
In the moment I relish connecting with people;
In all my sadness and seriousness
I never dreamed it would be about having a sense of humor in the face of death
In the moment I relish laughter;
In all my struggles and failures
I never dreamed it would be about falling on my face again & again
In the moment I relish getting up one more time;
In all my anger and judgments
I never dreamed it would be about forgiveness
In the moment I relish unconditional love;
In all my arrogance in competition
I never dreamed it would be about empathy and understanding
In the moment I relish helping others;
In all my work for being athletic
I never dreamed it would be about my body dying
In the moment I relish walking, talking, seeing, listening, tasting, touching;
In all my impatience
I never dreamed it would be about the moment
In the moment I relish all of my blessings;
I took for granted how rich I was,
But now I can only see how rich I am.

@ Jeanne Sather 2006

Chapter 12: The Three-Month Checkup

The bottles of prescription medications that used to crowd the top of my dresser have been swept away, replaced by vitamins and herbal supplements. My hair has grown back -- it's still very short, but thicker than before and a bit curly. I smile a lot. I hug my kids a lot. And, most importantly, my priorities have changed. I suddenly have time for all the things that, before cancer, I said I didn't have time for: exercise, yoga, sleep, gardening, fun.

I give money to panhandlers and smile at strangers. I'm alive. I schedule my work hours around my yoga classes, massages and other therapies that are helping me recover from three months of chemotherapy.

The biggest change is perhaps the hardest to explain -- a change in attitude. Having survived breast cancer, I know I need to live my life with a different set of priorities; one that admits the cancer might come back (although I don't think it will) but one that is not given over to worrying about cancer.

Last week, I waltzed into the University of Washington Medical Center in Seattle for my three-month checkup with my oncologist. Before my appointment, I went to the lab for blood work, five test tubes' worth, and then chest X-rays. It felt odd being back at the medical center -- I felt like I didn't belong there anymore. I had to ask where the radiation department was -- I'd forgotten. That was strange; I thought I knew every tile on the floor in that place.

All the tests have one primary purpose: to look for signs of cancer. One blood test can tell if there are cancer cells from the breast cancer growing anywhere in my body. I thought I wasn't worried, but when my doctor came in with a smile on his face and said, "You're perfect," I laughed, and cried.

I was so excited and relieved on the mid-February day that marked my twelfth -- and final -- chemo treatment. But I was also exhausted and weak, my resistance at its lowest point because of the assault the chemo drugs made on my healthy cells as well as on any cancerous ones that might have been floating around.

Life in the Really Slow Lane

I went back to work four days after my last chemo treatment, thinking I'd work four half-days that week. This was nothing new for me; I went back to work a week after my mastectomy, too. But I was simply too tired. I worked eight hours -- total -- my first week back at work. The next week I worked 12 hours, and I continued to do so for quite a while. I took afternoon naps and crawled into bed at 7 p.m.

Now, three months after the end of chemo, I work 25 hours a week in the office and do some writing at home. I also teach a night class once a week.

My doctor said it would take me six months to get back to normal. I said, "No way, how about two?" Now, I realize he's right, it will take time. But who's in a hurry? I'm not, anymore. I'm enjoying my recovery.

My garden has never looked so good. There are vegetables and fruit growing in among the roses and rhododendrons -- peas, potatoes, carrots, tomatoes, broccoli, two kinds of lettuce, strawberries and pears. Last Sunday, we bought a bag of ladybugs to fight off the aphids. So now my garden is home to hundreds of bright-red little beetles.

My calendar is crowded again. But in among the kids' track practices and field trips are my yoga classes, massage therapy for the stiff neck I got doing yoga, sessions with a counselor, walks and occasional doctor's visits. I'm also seeing a hypnotherapist once a week. More on that later.

And then there's what I jokingly call "kitten therapy." It's pretty hard to feel unhappy when two kittens are attacking your ear. Or when they're cuddled up under your chin and purring.

The night before my last chemo, I was lying in bed unable to sleep when I heard a persistent, faint crying outside my window. After ignoring it for almost two hours, I went outside and found two newborn kittens under the ivy.

The little mites were apparently born to a feral cat who disappeared. Their eyes were closed, placentas still attached. The kids and I spent the next few weeks bottle-feeding them on demand. Late-night feedings with kittens brought back all sorts of memories.

My father was a veterinarian, and when he did a Caesarian section on a dog or cat he would do the surgery in the evening and then bring the newborns home overnight, because the mother would still be groggy from the anesthesia. So my sisters and I would sit up all night, feeding the babies with eyedroppers and rubbing their tummies so they'd urinate. It's one of my happiest childhood memories, and one I was delighted to be able to repeat for Akira and Robin, my sons.

The Down Side

My recovery hasn't been all roses and kittens, however. A couple of weeks after my last chemo treatment, I started having night sweats and hot flashes. Ugh. Menopause. My periods had stopped in January as a side effect of the chemo, and my doctor had warned me that I might go into menopause.

So I went to see the nurse practitioner who is my new primary-care provider, and she recommended soy - lots of soy. I bought tofu and soy powder and two kinds of supplements, one with soy isoflavones and one with black cohosh. After three weeks of having a soy shake at lunch, tofu for dinner and supplements three times a day, the night sweats and hot flashes stopped and I had a menstrual period, the first in four months.

I'm eating all this soy to get the plant estrogens, and the best part is someone like me, who had an estrogen-positive tumor and can't have hormone replacement therapy, can still use soy. [Note: this chapter was written in 1999, when doctors believed this. More recently, I've been told to avoid soy supplements and eat soy products only occasionally, because my cancer is estrogen-positive. Ask your doctor.]

Along with my on-again, off-again perimenopause symptoms, I've been bothered by weight gain. During the two and a half months after my last chemo treatment I gained almost 30 pounds. Suddenly I was hungry all the time. Peanut butter and jelly sandwiches before bed. Bowls of cereal at 3 a.m. Apparently this is a common side effect of Paxil, which I've been taking since January for depression. But still, 30 pounds!

After two weeks of trying to lose weight, during which I gained 2 pounds more, I decided I needed help. Through my nurse practitioner I found a hypnotherapist whose specialty is weight loss. The first week she hypnotized me to give up the double-tall mochas I drink most mornings, and cookies, which I'll eat anytime. The second week, she hypnotized me so I wouldn't eat before bed or during the night. So far, so good. I haven't had a mocha since that visit; haven't even been tempted. And when I took a bite of a cookie I bought for Robin last Sunday, I gagged on it.

I've lost 4 pounds already. I really love hypnosis, not only for the weight-loss, but because it's even better for relaxation than yoga.

So what's next? I'll see my oncologist in another three months for more tests and a mammogram. Till then, I'll carry on with getting strong -- big doses of fun, laughter, exercise and helping other people who have cancer. I'm also thinking about taking Akira and Robin to Europe in the fall, and wondering if I have the nerve to start a new relationship with a man.

@ Jeanne Sather 2006

Chapter 13: When Cancer Comes Back

There I was, lying in bed on a sunny Sunday morning in July with the newspaper and a cup of coffee, enjoying feeling well. After five months of cancer treatment and five more months of recovery -- gaining energy day by day, remaking my life to fit my new values -- it was the kind of moment I’d learned to savor: The sun through the blinds, buttery yellow and warm but not too hot; the coffee, strong and rich with cream. And then I rubbed my hand across my chest where my right breast used to be and felt a lump.

There was little doubt in my mind that I was feeling cancer: a new tumor, just five months after finishing chemotherapy and less than a year after my mastectomy. I didn’t panic. I didn’t tell anyone, but I did call my oncologist at eight the next morning to make an appointment. I had to wait a week to see him, which was hard, but when I did see him, he had few doubts, either. "I’ve been fooled before, but ... " he said, while arranging for me to see my surgeon the very next day. Then he explained what kind of treatment he would recommend if the lump was cancer. "There aren’t too many doubts in either of our minds," I thought.

During the next few weeks I whirled from doctor’s appointments to surgeries to high-tech tests. I had surgery to remove the lump, then a long wait for biopsy results (positive), another surgery to remove more tissue around the lump, a bone scan, a CT scan, a PET scan, and more consultations on treatment options. The scans, meant to search for evidence of other tumors in my bones, my internal organs, or my lymph nodes, introduced a new fear: the possibility that the cancer had already spread beyond my chest.

During the several weeks of testing, I felt distant and spacey. I wasn’t sad or angry. Somehow I was resigned to the fact that my life might be over, except for the really nasty part: dying of cancer. I didn’t feel too many regrets for myself; I’d done most of the things I’d wanted to in my 44 years. The only regret I felt was that my children were still so young, 14 and 9. But even that was a distant regret -- not a hard, in-my-gut, my-children-need-me kind of feeling.

I did have a recurring, "New Age" kind of thought: Maybe the cancer had come back because I had not yet learned the lesson I was supposed to learn from having breast cancer. This kind of thinking is not really my style, but the idea hung on for days. What was I supposed to learn? What was I supposed to change? Was I supposed to move to the country and raise ducks and llamas, or what?

One of the Unlucky Minority

Finally, when the results of CT, bone and PET scans came back -- all negative -- the fact that I had only a local recurrence of breast cancer felt like good news. It could have been so much worse. My oncologist told me that only 3 percent of women with breast cancer who have the treatment I had -- mastectomy and chemotherapy -- have a local recurrence. I don't quite know what to do with that little fact, but there it is: I am one of a tiny, unlucky minority.

My doctors were able to determine that the second cancer was the same cancer as the first. It came back after chemo because some breast tissue containing ductal carcinoma in situ (DCIS) remained after my mastectomy, and the new cancer broke out from those cells in the few months after I completed chemotherapy.

My doctors recommended chemotherapy with Taxol: four treatments three weeks apart, plus six and a half weeks of daily radiation treatments at the same time.

Suddenly, I broke out of my funk, started sleeping well again and set myself to focus on getting through more chemotherapy, a daunting thought for anyone who’s had it. Chemo makes you so sick it’s demoralizing. Even though you know you’re doing it to save your life, you feel so sick, and after that so exhausted, that it’s hard to hang on and just endure.

Facing chemo again, I made several promises to myself: First, to stay away from people who seem to believe I am going to die or people who depress me with their own fears about cancer. Second, to exercise through my treatment if at all possible. Exercise has made me feel so wonderful during my recovery, and I’ve read that it helps the fatigue of chemo. And third, I decided not to let the cancer treatment take over my life.

So, I promised myself, I’d swim, walk, do yoga, have fun with my kids and friends. I’d even run in the Seattle leg of the Race for the Cure, the nationwide series of fun runs sponsored by the Susan G. Komen Breast Cancer Foundation to raise money for research.

Chemo the Second Time Around

I learned some things from the first round of cancer treatment that have made facing it the second time easier. I’m not afraid of chemo this time. I know the hospital, I know the staff and I have a pretty good idea what is going to happen, even though I’m getting a different drug. Even knowing that my hair will fall out - again - is not that big a deal.

I headed to my first chemo with Taxol on September 3, feeling pretty calm. Taxol causes severe allergic reactions in some people, so I had medication to take 12 and six hours before the treatment to help prevent problems, and then more "premedications" to take half an hour before the Taxol IV started. This IV takes three hours to run, an awfully long time when you're sitting in the chemo room with nothing much to do. But there was a man there, the husband of a cancer patient, who was trying hard to cheer us all up, dancing around with different hats on his head. He succeeded.

I went home feeling pretty okay, and spent the evening eating pizza and watching videos. But the next day, a Saturday, I was miserable. My joints ached as if I'd run a marathon and contracted the worst flu of my life at the same time. I spent the next three days hiding in my bed crying with pain. Late on the third day, I was able to walk around a bit. On the fourth, still feeling achy, I went back to work, and for a swim afterward. By the following Sunday, I felt well enough to run in the Race for the Cure.

The race was just what I needed. I ran with my two sons and a dozen friends and co-workers, caught up in a crowd of 15,000 people on a beautiful, hot morning in Seattle. Here and there in the crowd were women in pink baseball caps, the breast cancer survivors. And I was one of them.

@ Jeanne Sather 2006

Chapter 14: Go Ahead, Radiate Me

Down the hall from the Cancer Center waiting room at the University of Washington Medical Center -- through the double doors, then a left, a right, and another left -- is a world I never knew existed in all the months I've been receiving treatment for breast cancer at UW: the Radiation Treatment Area.

There's another waiting room here, filled with anxious husbands, worried mothers and the patients themselves -- some of them heartbreakingly tiny children.

Before I can begin radiation to combat a recurrence of the breast cancer I thought I had beaten five months ago, there are hours of set-up to get through. Most of it happens in what is called the simulation room, where the first thing the technician does is snap a Polaroid photo of me for my chart. I think it's to make sure they have the right patient on the table.

Next, the technician tells me, he will make what he calls an alpha cradle to hold my head to the side and my right arm crooked back over my head. I must be in this exact position on the table every day during the six-and-a-half weeks of radiation treatments to the chest wall, where my breast used to be, and to the lymph nodes under my collar bone.

As he mixes two foul-smelling chemicals together in a blue plastic bag, the technician jokes, "This looks like a garbage bag, but it's actually a medical device." I lie on the plastic bag, which is warm from the chemical reaction.

Practicing for the Real Thing

For the next two hours, I stretch out on the table under an X-ray machine, head and arm in the cradle, overhead lights dim, Christmas lights twinkling around the ceiling, music on the CD player, and red laser beams crossing my body from the sides of the room. Three or four technicians and doctors move in and out of the room, taking a series of X-rays, calling out numbers to each other, taping wires to my mastectomy scar and to other scars so they will show on the X-rays, adjusting the machine to various angles, and marking my chest with black pen and then with small tattoos.

I lie there feeling relaxed and dozy. Words and phrases run through my head as I try to decide exactly what I'm feeling. Mostly I'm bored. I'm certainly not scared. Every so often I sneeze violently from the smell of the chemicals in the alpha cradle, and the technicians emerge from behind their lead shields to reposition me.

The three scars that crisscross the right side of my chest (mastectomy and node-biopsy scars and the scar from the removal of the most recent tumor) are now overlaid by a web of black marker lines. And I now have seven small, permanent tattoos, so the technicians will always know where to set up the radiation machine.

Once we're done, I meet with my radiation oncologist, Dr. Karen Lindsley, a small, slender woman with a quiet face. She explains the procedure and side effects (fatigue and a sunburn-like redness on the skin are the two most common), and gives me a consent form to sign.

The following week I come back for a CT scan, to measure the thickness of the skin over my chest, and then there's a dry run on the radiation machine that will be used for my treatment.

Somehow I'm not much worried about the radiation; much less worried than I was about chemotherapy. My aunt had radiation last year for breast cancer, so I've heard about it from her, and it just seems less dangerous than the chemotherapy, which sends poison floating through my blood.

About a week into my radiation, I realize that I don't know how it works to kill cancer cells. I know that chemo kills fast-growing cells, which includes cancer cells, but also hair follicles, the cells in the lining of the mouth and other rapidly dividing cells. But radiation? I've been just taking it on trust.

When I ask my doctor about this, she explains that radiation kills cancer cells by scrambling their DNA. But I know radiation can cause cancer, so my second question is whether all this radiation will eventually give me skin cancer. Not skin cancer, says Dr. Lindsley, but some people do develop other cancers in the radiated area. These are likely to be tumors on the bone or muscle, but the risk is less than 1 percent 20 years after treatment. I decide that's a reasonable risk. Finally, the daily radiation treatments begin.

Taking the Cure

Radiation is boring. I go in every day, five days a week. I usually sit in the waiting room for a bit, eyeing the other patients -- who are eyeing me -- then, when my name is called, change into a gown and hop on the table. The two technicians push and pull until my body is lined up exactly where they want it. Then they exit and zap me with a minute of radiation, return to line up the next angle and repeat the process three or four times.

During the treatment, we chat, our conversations continuing from day to day -- kids, the weather, weekend plans, Halloween costumes. With my bald head I'm debating between dressing up as Mr. Clean in a white jumpsuit, and Darth Maul, the fearsome character from the new Star Wars movie.

Mostly, though, I daydream through the half-hour or so I'm on the table, looking into the huge iris of the radiation machine. I dream about trips I want to take, designs I want put on my head with henna, the beach on a rainy day.

For the first 10 days, I notice no effect from the radiation. On the eleventh day, my chest and shoulder have a light sunburn, and I have a sore throat. Dr. Lindsley adjusts my radiation to shield the throat. My right shoulder also is hurting, apparently from my position during the treatments. I ask about massage, and my doctor okays it. She also says radiation tightens the muscles and tissues in the area, so both exercise and massage are good.

Meanwhile, I order a "radiation camisole" from an American Cancer Society catalogue to wear when my skin gets too tender for a bra. And while I'm at it, I order a new hat and some headbands. And one night, just for fun, a friend and I go out and get a henna "tattoo" of a mandala painted on the side of my head. The mandala, a circular design that symbolizes totality in Hinduism or Buddhism, is a prayer for me to get through this treatment with as much grace as possible, Then, I want my life back -- changed forever by cancer, perhaps, but still my life.

Author's Note: Jeanne's Diary ends here, rather abruptly. I was fired by OnHealth.com when I was nearing the end of this round of cancer treatment. That story made national headlines (see http://seattlepi.nwsource.com/local/canc271.shtml), and I also write about it in the Cancer and Work section of this blog.

@ Jeanne Sather 2006