Wednesday, June 26, 2002

 

Introduction

I feel as though I know you. You're caught in the middle between the older generation and the younger generation. You are mother not only to your children, but increasingly to your parents, to younger co-workers, perhaps employees, to older friends and neighbors. But by now, you can handle it. You are accomplished. Your life is organized and running smoothly. You take care of your home, family, job, volunteer work -- you get more done and done well in a day than many younger than you do in a week.

Still, you are looking forward to the day when the demands on you will be fewer, life less fragmented, and you can lavish some time and affection on yourself, and your relationship with your husband and others. You can't wait to spoil your grandchildren, or to travel, to spend all day in the garden or just read a book.

Then you found the lump. Breast cancer. Your first reaction was: "Well, let's just get rid of this and get on with life! I can handle this. I've handled worse. It's just a little lump. Cut it out and send me home."

That was my first reaction. Just cut it out. I thought I could write down the date for surgery on my calendar, maybe have to reschedule a few meetings, cancel a hair appointment, slip this minor disturbance into my busy life.

But breast cancer isn't as simple as that, as just cutting it out. Breast cancer will take all of your skills as an organizer, communicator and researcher. Breast cancer demands you take on new roles. You will have to become an advocate for the best in medical care. You will need to be assertive, aggressive, demanding, zealous in finding the best treatment for yourself.

You will have to ask for help from the same people who have always relied upon you to be the helper. You might be surprised at the people from whom you will gather strength. Getting through it comes one day at a time, sometimes one breath at a time. And you must face your own mortality, the possibility that breast cancer can kill you.

It can kill you, and when you realize that, it will send your life whirling out of control. It's up to you to pull yourself out of the miasma and save yourself, to write yourself a happy ending. So don't lose hope. Just the fact that you've discovered a lump is probably due to more advanced medical care -- better and more frequent mammograms and ultra sound, your increased awareness of the importance of breast self-exams. If ever there were a good time to be diagnosed with breast cancer, it's now. Breast cancer treatments are becoming more sophisticated and successful daily.

Survival rates are excellent, given the right treatment, quickly administered. When I was first diagnosed, I went in search of a book to tell me what to do. I found all sorts of books written by doctors, and brought them home by the armloads. The books gave me a crash course in breast cancer, available treatments, survival rates. But I wanted a book that could tell me what it was like to HAVE breast cancer. I wanted a book to describe the fear, the uncertainty, how my body would react to treatments, how to cope with the changes. I wanted to read somewhere that other women looked at themselves in the mirror after breast cancer surgery and cried. I also wanted to know how to fit breast cancer into my busy life, how to get through breast cancer treatments without leaving the rest of my life in a shambles.

I hope I've written the book I was looking for, an honest book about what breast cancer does. I didn't want its pathology, but its psychology, not presented dispassionately, but emotionally, with a little humor thrown in so I could have something to laugh about again. I hope you will find that kind of help in this account of my journey through breast cancer. At the end of each chapter, I've jotted down a few "helpful hints," most of which I discovered after I needed them myself. And, I've
given you a place to write notes to yourself -- things to ask your doctor, things you want to remember, or maybe just how you are feeling.

Good luck. You can do it. You can hold it all together. You're a woman, after all. A
very busy woman -- with breast cancer.

 

 

 

 

 

 

 

 

July 21

Discovery

In the middle of May, doing an exercise that required pressing my chest against a bar that lifted some weights, I felt a pain in my right breast, but not so bad I couldn't put up with it. I figured it was an inflammation of some sort, maybe in a milk duct, which I had had before but not for many years.

At the end of May, our lives began to get really hectic. Our daughter Morgan graduated from college, and we went on a two-week family vacation with Morgan and our older daughter, Cassidy. At the same time, the weather was so inviting that I began to exercise outdoors instead of at the gym. I forgot about the little pain.

When we came back from our trip, I called and made an appointment for a complete physical with my doctor, Scott Turner. The next available appointment was Monday, July 21.

In the course of a breast exam, Dr. Turner seemed to find something irregular in my right breast. We are social friends, and he's been my family doctor since he delivered my son Jake. When I lie on the examining table and have my feet up in the stirrups, or when he examines my breasts, we avoid eye contact and pretend it's just another social event. But when his fingers slowed down in their pattern of breast exam, and he went back again and again to one certain spot, I looked up and saw his forehead wrinkle and his mouth tighten with concern. I remembered the pain and asked, "Did you find a lump?"

Then he looked me in the eye. The answer was yes. I had felt it too, like a tiny frozen pea under my skin. There is no history of breast cancer in my family, and breast cancers, I had always heard, don't usually hurt. He sent me for a mammogram two days later, on Wednesday. I went, and when they read the test, there was nothing unusual. The radiologist ordered an ultrasound, though, since we knew the lump was there. They wedged me in immediately between their other appointments. The ultrasound was inconclusive. I went home feeling relieved. I was beginning to think that there was nothing to worry about. When I told my husband, I could see in John's eyes that he wasn't so sure we could stop worrying.

Dr. Turner wasn't satisfied either. On Thursday, he sent me to a surgeon, who did a needle biopsy of the lump to be sent to the pathologist. The biopsy was a little uncomfortable. The surgeon numbed the area, the worst part of the procedure, and then inserted an instrument to clip off a little tissue. At the same time, he explained my options should the tissue be breast cancer -- mastectomy or lumpectomy and radiation. I immediately set my mind on a lumpectomy. It just sounded so much more simple, so much easier to handle. Just cut the cancer out. If it was really cancer. On Friday, the surgeon's day off, he called to tell me that indeed I had breast cancer.

That afternoon I got a form letter from the hospital telling me my mammogram was negative. I threw it in the trash and started to cry. John gave me a hug, and I told him I was afraid. He was afraid, too.

Dr. Turner called me that evening and said he wanted me to decide by the next day what I was going to do. He said I should have surgery ASAP, preferably the next week. I agreed. I wanted the cancer gone NOW. On Saturday, he called early. By Monday, my course was set.

I imagined that I could keep my cancer a secret. After all, it was just a little lump, and the surgery sounded so simple. I'd be in the hospital only a day or two and then could go on home with a dressing over the incision. I decided to go to a neighboring town to have the surgery. I knew that in Winona, the news would be all over town before I had even been given the first IV. And I would have to go to another town for radiation anyway. No one but my immediate family would need to know. Dr. Turner made an appointment for me with Dr. Dalton.
Over the weekend, I thought about my life, and what part this cancer was going to play. What was I afraid of? Was I afraid of death? Or was I afraid of the pain? Death or pain? I never once thought "why me?" I knew the futility of that question. I knew that asking it just made me feel worse. The only answer to "why me?" is "why not?" I'm human, and the only thing I really understand about being human is that life is imperfect. Life can't be controlled, just directed.

During the thousands of years that humans have existed, we know that whenever those humans could think, no matter how rudimentarily, they have cursed their trials, sought perfection, and imposed that perfection on a God, a Supreme Being, a Savior. (Or is it that Perfect Being who imposed imperfection upon us?) Fear, death and pain were what rolled around in my mind, like steel balls in an old pinball machine.

Dr. Dalton examined me on Tuesday, a week and a day after Dr. Turner found the lump. Dalton agreed that I could have a lumpectomy, which, when followed by a five-day-a-week, six-week course of radiation, has identical recurrence rates to a total mastectomy. The lumpectomy meant that I would still have a breast, which I realized I had become rather fond of over the course of almost forty years I'd had it. My breasts represent my womanhood, my motherhood. They help define my relationships with my husband and my children.

On Thursday, I had surgery. I went in early to the hospital. I wanted to drive myself there. I would have to leave at 5:30 a.m. for the hospital, 30 minutes away. John and Morgan would come that afternoon to see me and drive my car home. I was determined that this cancer was not going to disrupt my life and my family's life. Cut it out and get on with things.

During the pre-surgical routine, which I was taking in a matter-of-fact manner, the nurse asked if there were any procedures I did not want performed while I was under the anesthesia. I laughed and said, "I don't want to wake up and find out they've taken my breast." Prickles of shock went through me when I saw her take that very seriously and write it down on a form that I had to sign.

In surgery, they injected a blue dye into the tumor that would spread to the lymph nodes under my arm to which the tumor was related. They removed the tumor, some tissue around it, and the lymph nodes. I didn't pay much attention, because although it had been explained to me what the lymph nodes do, I didn't know what it would be like without them.

When I woke up in the recovery room, my friend Cynthia, who works at the hospital, had come to hold my hand as I surfaced from the anesthesia. I shocked myself and her by saying that I wished I had not woken up; I wished I had died. Then I don't fear death, I thought. But certainly I don't really wish for death, do I? By the time I was fully awake, I guessed that I was meant to live a while longer.

In my hospital room, I was given pain medication by machine. I wasn't horribly uncomfortable. I was in a private room in the children's ward, for some odd reason, and the nurses all had soothing bedside manners and wore little smocks with Barney and Winnie the Pooh on them.

John and Morgan brought a huge bouquet of flowers. They both seemed relieved to see how well I looked. When the dressing was changed the next day, I was glad to see that the incision was not very noticeable. The surgeon said the surgery went well, no surprises, and the lymph nodes seemed to be all right. We had to wait for the pathology report to know for sure. I knew they would be fine. I was anxious to get home and get on with my life. I hated missing work.

A volunteer for the American Cancer Society came in before I went home and showed me how to care for myself at home. She demonstrated some exercises, which I thought I didn't need to do, since they were for post-mastectomy patients. She had had a mastectomy and a breast reconstruction, which she described in detail. I kept thinking, "I don't need to know these things. I'm fine. The cancer is gone."

A few days after getting out of the hospital, John and I went back to meet with the surgeon. He told us the pathology report indicated some stray cancer cells near the margins, the edges of the tissue they cut out. But he still seemed to think they had "gotten it all." The cancer cells that the pathologist saw near the margins were ones that hadn't broken out or something. I didn't quite understand, but they sounded harmless. When the surgeon said there was no lymph node involvement, I was surprised to hear John breathe an audible sigh of relief and say "Thank God." I had no idea he was so worried. I wasn't.

John heard from someone at work that it was all over town that I was dying of cancer and we were going to sell our business, a newspaper. So I had that to deal with, too. What should I say to friends and acquaintances? I finally wrote about it in my column. But I felt fine, I assured my readers. I hurt but was getting better. I was tired, but that was improving too. And, I said in a lighthearted way, lucky me, I'd have lots of therapies that would take up my leisure time for the next several months. I had every confidence that this ordeal would be over shortly. Don't worry about me!

I'd gotten a reprieve, I thought. If it hadn't been for some impulse to see Scott Turner; if it hadn't been for his insistence that I see the surgeon, even though the tests did not indicate that I should do so; if it hadn't been strongly suggested by the surgeon to have the needle biopsy. If, if, if. This time the ifs tumbled to the plus side, instead of the minus.

To my women friends, my readers, I said: get a family physician that you like and trust and who likes you and your family; get a regular physical exam; learn how to examine your breasts; don't harbor vague notions about cancer hurting or not hurting, being or not being passed down genetically; don't lull yourself into complacence just because you have a mammogram now and again (the surgeon said that in 90% of the surgeries he performs, the tumor was first found by manual examination, not x-rays).

I thanked our medical community for being so accessible, so quick to respond, for caring beyond the office walls. Then to myself, I said: Okay, kiddo, let's keep slogging through, there's bound to be that damned silver lining in there somewhere.

F.E.'s notes:
Resist the temptation to latch on to the first doctor you find. My sister was in such a rush to get a cancerous lump removed that she had her gynocologist perform the surgery. That first surgery may have complicated the subsequent surgery she underwent when she finally found a very good surgical oncologist who had some familiarity with her quite rare cancer.

Get to a medical center that has a reputable oncology department. I was glad that I did, although I think the world of my family practice physician. But as the treatments progressed, the fact that all of the doctors knew each other and communicated well with each other expedited my treatments and procedures. All my records were in one place, too, saving me from having to drag x-rays around, or, more often the case, having to repeat x-rays and tests I had already had somewhere else.

Now is a good time to start reading about breast cancer and your options. Soon you will see the oncologist, if you haven't already, and you will have to make some choices. Your treatment choice will depend upon what type of cancer you have, how large it is, whether it has spread, and how far. If you don't understand your situation when your doctor explains it to you, say so. Have it explained until you understand your diagnosis and your treatment options.

If it is important to you to try to keep your breast, tell the doctor so. Some women would rather not have to deal with any uncertainty, and want a mastectomy. Some, like myself, wanted to keep the breast, and chose lumpectomy, removal of lymph nodes, and radiation. However, if the cancer is advanced, or quite large, you may not have an option. Have your doctor tell you all about your cancer and present you with options. If you are uneasy about what the doctor has recommended, it is perfectly permissable to ask for a second opinion.

Ask the doctor to explain the surgery. What will be removed? What will it look like? Ask how long you will be hospitalized, how long it will take to recover, how long before you can work. Ask about any long-term effects, not just of the surgery but of subsequent treatments. Ask about the risks.

Write it down, or take someone with you who can write it down or remember it.

You need to educate yourself, so that you can ask the quesitons you need to ask. You don't want to wake up one day and realize you wished you had made a different choice.

OR longer form:

Questions for your primary care physician or gynecologist

1. If you feel a lump, but the mammogram is negative: please order an ultra sound

2. If the mammogram shows something irregular: please order an ultra sound

3. If the ultra sound shows something abnormal, or if the ultra sound cannot

conclusively rule out a breast cancer: please order a biopsy

4. If you aren't satisfied with the results you get: I'd like a second opinion

5. Will you refer me to a surgeon who has experience with breast cancers?

Questions to ask the surgeon

1. How many breast cancer surgeries have you done?

2. What are my surgical choices?

3. What is involved in a modified radical mastectomy? Explain the surgery. How long will I be in the hospital? How long will it take me to recover? Can I have reconstruction surgery? What are my choices of reconstruction surgery? When can I have the reconstruction surgery? What are the risks of a modified radical mastectomy? Are there any long-term effects that I should know about now?

4. What is involved in a lumpectomy? Explain the surgery. How long will I be in the hospital? How long will it take me to recover? Is there any plastic surgery I can have if the surgery will disfigure my breast? When would I be able to have that surgery? What are the risks of a lumpectomy?

5. Will I have to have radiation? Will having radiation on my breast make a difference in the sort of breast reconstruction I could have if I should need a reconstruction in the future?

6. Will you be removing my lymph nodes? Will you explain what the lymph nodes do, and what the effect will be on me when they are removed? Will removing the lymph nodes make me uncomfortable? Will I experience numbness in and under my arm? Will the numbness ever go away? Will it get better? Will my arm swell from lymph edema? Describe lymph edema. Is there any treatment for lymph edema if I should get it?

7. Will I have to be more careful with my arm after the lymph nodes are removed? Why? What are some of the things that I will have to avoid, besides having blood pressure taken on that arm, or having blood drawn from that arm? What about manicures? What about infections?

8. Is there anything I will not be able to do after surgery?

Other people to contact and question

1. Insurance agent. What will my health care insurance pay for? What will I have to pay for?

2. Billing offices of doctor and hospital. How much will my bill be for my breast cancer treatments? If my insurance won't cover the entire cost, what sort of payment plans do you offer?

3. Your employer. Tell your boss and co-workers about your upcoming surgery and treatments. Work out a plan for the time you must be away from work. Be sure to keep them updated, as your plans might change depending on the outcome of your surgery and your reactions to the treatments you will be having. Let them know that breast cancer is very treatable and you should fully recover.

3. Friends, especially those who have had cancer. What was your experience?

4. Family. Your family will be crucial during the coming months. Confide in them. Let them help you by giving you rides, cooking, doing errands for you, being there for a shoulder to cry on, to cheer you on and tell you you're doing a great job and things will get better. If you include them in your breast cancer, your relationships will become closer.

5.Someone to go with you to ALL your doctor appointments at which you will be getting information about your diagnosis and treatments. You will not be in the best frame of mind to concentrate and remember. An extra set of ears is of the utmost importance. I took my husband with me. But another family member, or a good friend, could do just as good a job.

Sample of Doctor's Notes -- this is actually for another chapter:

The Doctor Says

Hormone therapy

Cancer cells are stimulated to grow by substances in the body. For example, removing the ovaries, which make estrogen, will often cause breast cancer to shrink. A pill called tamoxifen (sometimes referred to as an antiestrogen) can be used to reduce the risk for recurrence from an already diagnosed breast cancer which may have snuck over to distinct places in the body, but is too small to see. Tamoxifen has also been shown to reduce the risk of ever getting breast cancer in women at high risk for getting breast cancer, and has been shown to reduce the risk of a new primary breast cancer in women who have had one primary breast cancer.

Like chemotherapy, hormone therapy is also used if the cancer has obviously recurred in an organ beyond the breast, to attempt to shrink the cancer.

Write Your Notes Here:
August 13
A visit from a magician

A week after my surgery, I received a little gift from a friend. Mary Alice drove up from Lawrence, Kansas.

The first year John and I were married, we rented a farmhouse a little south of and between Lewiston and Utica, Minnesota. Our landlords that year, the Browns, became good friends. When we came back after a year in Seattle, where John pursued his Master's in English literature, we got back in touch with the Browns, perhaps with the idea in mind of renting their farmhouse again. We ended up renting a different farmhouse, but Gerald said we should meet the couple who were renting our old place. He said they reminded him of us. We got together with the Browns and some of the other neighbors for a card night and met Mary Alice and her then-husband, David. David taught in the English department at Winona State, and Mary Alice was finishing up a Master's in art from the University of Iowa.

We hit it off right away but of course didn't understand in the least how we could remind the Browns of this couple. Never mind that we all had long hair, dressed almost exclusively in jeans, plaid shirts, and boots, had a dog, no kids, put weeds in vases instead of spraying them with herbicides, drove foreign-made cars, had weird art on the walls and books everywhere. Each couple had one Midwesterner and one New Englander, and all of us were all about the same age. Only later did we discover how much like Mary Alice and David we were.

We shared similar interests in literature and art. We were all competitive and distilled that competitive nature into such endeavors as all night 500 games, wild political arguments, and whose-dog-is-smarter shouting matches. We spent hours trout fishing in Rush Creek, Hemenway Creek, the Whitewater, smoking cigars to keep the bugs away.
John, David and Mary Alice were all good fishermen. I never caught anything but suckers. David, a Socialist, and committed to egalitarianism in all areas of his life, once even declared that we would make a meal of suckers. I never was sure whether he was doing this to include me or the suckers, but whatever the motive, the outcome was distinctly unegalitarian -- suckers are not the equals of trout -- and we never again felt required to include suckers in our diets.

We hunted mushrooms together. I didn't have the courage to admit to David that I mistrusted his skills as a fungus-finder and always pushed the mushrooms around on my plate until I was sure the others were not showing signs of poisoning. We picked watercress, wild asparagus and other things that they assured me were not only okay, but good to eat. They also introduced me to garlic, which my parents so abhorred that I thought it might be against our religion.

Mary Alice and I were in a women's consciousness-raising group with several other Winona women. At one of the meetings, I announced that I was pregnant and to my surprise became the object of pity to several of the women in the group. Mary Alice didn't go so far as to pity me but did say that she thought it was too soon in her marriage to be having a child. At the next meeting, Mary Alice announced her own pregnancy. We had yet another thing in common.

I adore food any time and during my pregnancy grew to mammoth proportions. At seven months I was already hearing people say, "Are you still around? I thought you'd had that baby by now!" Mary Alice was just beginning to show. I was searching for John's large-size shirts to wear. Mary Alice hadn't even looked in the Sears catalog for maternity clothes yet. I was a jumble of hormones that kept John on his toes, and Mary Alice was her calm, funny, happy self.

John Tweedy was our doctor, and of course we compared notes. She was in perfect shape; I got varicose veins. David and Mary Alice were going to name their baby after anti-war activist Angela Davis if it were a girl. John wanted to name ours Ernest, after his grandfather. I was beginning to wonder not only if my marriage would survive this nine-month trek I was taking into uncharted territory, but if there was any way I could ever remain friends with Mary Alice.

Then, the final blow. Mary Alice had her baby on MY due date. We went to the hospital to visit, and Mary Alice showed us a beautiful, dark-haired, wide-eyed baby girl named Angela. I had heartburn. I went home and cried. Two and a half weeks later, I too had a beautiful baby girl, and I didn't have to name her Ernest. I called her Cassidy, after my grandmother's family.

But then Mary Alice's husband moved on to the University of Oklahoma, and our friendship became one of memories, mostly, with the odd, impetuous phone call now and again. Then, out of the blue, she called to announce she would visit. Neither she nor I knew that by the time she arrived I would have cancer. Her visit reminded me how fond I am of her, and what a good friend she was and continues to be. We laughed, partied, stayed up too late, rode around the bike path, went out on the river, got stuck in a shallow backwater. She and John caught four trout for lunch, and I wouldn't have let her leave if it weren't for the fact that we are too old to have so much fun.

Her visit just when I need to be reminded that I am fortunate to have many people who love and support me could not be accidental, could it? It had to be the result of some cosmic force, some energy from me to far-off stars, which then collided and sent a burst of energy back to Mary Alice, propelling her into Winona. Maybe I am just reacting to Mary Alice's artistic mind, which can make a painting, magically, out of tubes and brushes and water and pencils, and sees life in such a surprising and enchanting way that makes trials seem not nearly so insurmountable.

It was a great visit.

 

F.E.'s Notes:
If you are the sort of person who has trouble accepting help and concern from others, because you are used to being the caregiver, now is a good time to get over it. Even if you just had a tiny lump, and it barely makes a difference in how you look, you'll find that you will be more than just a little bit afraid. Let your husband help you, let your kids help you and wait on you, let your friends hover over you. Not only do you need it, but they do, too. This is just as frightening for them as it is for you. Maybe more so.
You are going to need all of your strength and concentration to get through this breast cancer business. Don't worry about things. The doctor's office will take care of most of the things you have to worry about concerning insurance, billing and such. They will tell you when you need to come back for another appointment and that sort of thing. If they don't, get a new doctor.
Don't worry about work. They can manage without you, even if you are self-employed. Breast cancer is more important. You'll be pleasantly surprised at how accommodating people will be.

Write Your Notes Here:

 

 

 

 

 

 

 

 

 

 

 

 

September 3, 1997

Stray cancer cells, or they didn't get it all

My cancer wasn't in the lymph nodes, which is great, but like Hansel and Gretel's bread crumbs, tiny cancer cells that had not yet broken out and enlarged to tumor size laid a trail for the surgeons to follow.

In our family, any time there is a medical question, we call Uncle Lee, John's brother. No matter that he is a plastic surgeon. We demand answers from him on any and all medical conditions. After the first surgery, when the surgeon said that there were stray cancer cells near the margins of the tissue that had been removed and studied, a red flag went up for Lee. He conferred with an oncological surgeon, and they agreed the situation needed more study. At nearly the same time, my surgeon had seen the actual slides of the tissue, not just the pathology report, and was not happy either.

I of course did not want to hear any of this. As far as I was concerned, I had done my duty and given up a piece of skin and wanted it to be all over and done with. But phone conversations continued between John and his brother and my surgeon. Finally I had to accept the fact that the surgeon had not gotten what he called "clean margins." In other words, those old comforting words "they got it all" didn't apply to me.

John and I went down again to meet with Dr. Dalton. John has taken to holding my hand as we drive in the car. His palm is sweaty, but we are comforting each other, patting each other, touching so that nothing will come between us, especially not this cancer. At the clinic, I sit yet again on the examining table, snuggled between the stirrups, glad not to have my heels planted in them. I am wearing a piece of paper the staff calls euphemistically a gown. I had been examined by a resident and by the nurse assigned to breast cancer patients to answer questions, inform them about support groups, and the like.

John sat in a chair. He was nervous. I could see the little muscle in his jaw working -- tighten, relax, tighten, relax. I was afraid. Afraid of what they were going to tell me. Afraid of more surgery. Afraid that I would have to have a mastectomy. Dr. Dalton came in with the resident and the nurse and leaned against the counter. He explained again about the stray cancer cells. He drew a little picture that looked like a picture of an alien universe, with the tumor they had removed in the center, and the baby cancer cells whirling around it. There on the very edge of this cancer universe was a cell that had nearly escaped. The scalpel just cut off its tail. There it was. Now it was my problem, not just the pathologist's and surgeon's. In a week they would perform a second surgery.

In the first surgery they removed the lymph nodes under my right arm. The second time, there would be no lymph nodes to remove, and the incision would follow the path of the first. I went in for the procedure, much the same as the first time. Afterwards I was sent to the recovery room, and John came to take me home.

A week later, we all assembled in the examining room, and Dr. Dalton said it was a very good thing that we decided to go through the second surgery. There was another tumor, not quite as big as the first, but a tumor, breast cancer, nonetheless. This time, he assured us, the margins were clean. But he didn't say "we got it all." My confidence that this turn of events means little in the scheme of things is shaken. Now I look into John's eyes, or Morgan's, and I think the fear there simply mirrors my own.

 

F.E.'s Notes:
I am very glad that I had so many doctors in on the decision to do a second surgery. I suppose that my surgeon would have come to the conclusion that he would have to go in again to get "clean margins" but it never, never hurts to get a second opinion. Most surgeons will consult with pathologists and oncologists and other surgeons, but if yours doesn't, don't be shy about asking for more input. You won't hurt the doctor's feelings, and if you do, so what? It's your breast you're talking about.
I also wish that I had asked about plastic surgery before the second lumpectomy. I'm not sure they would have done anything, but a year later, my breast is sort of cock-eyed, and I don't relish the thought of more breast surgery, even plastic surgery. I would have liked to been able to see my options and make a plan.

Write Your Notes Here:

 

 

 

 

 

 

 

 

 

 

 

 

September 10, 1997

The cat who ran out of lives

Our cat, suffering from heart failure, had to be put to sleep last week. We don't know exactly how old she was, but we got her at Christmas in 1979, full grown, which would make her in the neighborhood of nineteen years old when she died. We had just moved to our house in town on Washington St. from a place in the country on Pleasant Ridge. Just before the move, our previous cat, a huge striped male who never got a name other than "Kitty," had died. When we moved into town, the girls wanted a new cat. Before Christmas, John and I looked around, and ended up at the Humane Society Animal Shelter.

John was immediately befriended by a full-grown, soft grey, short haired cat, with pretty green eyes. She looked much like the Russian Blue cat breed. I objected, "The kids want a kitten!" The grey cat persisted and finally came home with us on Christmas Eve. On Christmas morning, we put a little collar with a bell on it around her neck and hid her in the bathroom. She was very quiet. When the kids got up to see what was under the tree, they found a note telling them where to look for their present. So they met the cat.

Cassidy loved her immediately and dubbed her LaBelle Tinker Edstrom. Morgan said, "But I wanted a kitten!" Pretty soon we all forgot that LaBelle hadn't been a kitten when we got her, and she became a member of the family, an unusually quiet one. She soon became listless and seemed to be sick. We took her to the vet, Jerome Speltz, who x-rayed her and found a broken sternum that had not healed properly, and an abscess. This cat had a past. Some damage may have also been done to her larynx, which would explain why she said "Yawk!" instead of "Meow." She would need to take pills and receive a long series of injections.

Jerome took pity on us as we could see this $7.00 cat becoming worth a couple hundred dollars we couldn't really afford. He taught us not only to give her pills, but to give her injections--we thought. It looked so simple when he did it: just lift up the loose skin on her back, stick the needle in, push the plunger, and there you have it!

We came home from work the first noon we were to give her the injection. First we caught her -- not an easy job back then. Then I held her while John attempted the injection. He stuck the needle in, so far so good. But when he started to push the plunger the cat leapt from my arms and streaked from the room. We gave chase. The cat was practically a blur, but when she stopped momentarily, we could see the needle dangling from her back, making her look like a bull in the ring after the picadors were through with him. We finally caught her and learned to be much gentler with the plunger.

Sometime in February of that year, I think, we invited some new friends over for dinner -- Jan and Bernie. They were also good customers, running ads for their Chevy dealership in our newspaper. We didn't have enough furniture to fill up all the rooms in the house, but we had brought some porch furniture in and arranged it in front of the fireplace in the living room, which had no other furniture except our old upright piano. In front of the porch furniture, I put a Persian rug we had just bought from a Pakistani student at the university. In my imagination, our guests would arrive, we would have drinks and hors d'oeuvres in front of a roaring fire, and then eat dinner in the kitchen. Pretty impressive, right?

Just before they were to arrive, John started building the fire in the fireplace. It was designed to burn coal, really, and has a small metal fire box with a small flue at the top. He crunched up old newspapers, stuffing them all around, which LaBelle thought must be some kind of cat game. He shooed her away and went outside to get the firewood. After he had arranged the wood, he struck a match to the paper. Just as the first tall tongues of fire leapt towards the flue, LaBelle poked her head out of it. John yelled and LaBelle's head disappeared up the flue.

John was yelling "Water! Water!" Cassidy and Morgan were wailing. I was trying to fill a bucket with water, but one of the kids had just flushed the toilet, and there was nothing but a trickle of water coming from the faucets. (We finally had the water service fixed the next summer.) While the bucket was filling, I ran back to the living room, just in time to see John picking up the Persian carpet to smother the fire. I'm sorry to admit that I chose the carpet over the cat, snatching it from his hands.

Cassi ran to get another rug, a white cotton one from the bathroom. John threw that on the fire, but instead of smothering the flames, it ignited. He dragged it out of the fire, and with me running ahead to open the front door, tossed it still burning out on the snow on the front lawn. By this time, the bucket was full enough, and we threw it on the fire, which sputtered and steamed. As we watched, thinking our cat was certainly fried, LaBelle streaked from the chimney and out the front door. She hit the door at the same time as Jan and Bernie did, further puzzling them, since they had seen the rug burning on the snow and the door wide open in the freezing weather.

They came in, a little hesitantly, and we welcomed them with a family picture of soot-smudged harried parents and weeping and wailing little girls. Things settled down a little, and at the end of the evening, Jan and Bernie left and LaBelle returned, whiskers and eyebrows frizzled and curled at the ends.

The next day, I opened the broom closet and found the fire extinguisher which we had stored there, but not once had thought of during the previous night's ordeal.

LaBelle survived the arrival of our son Jake, of whom she was pretty jealous, and of Maggie, a black lab puppy that the cat successfully intimidated with her hissing and bristling. She was a menace to rodents, bats, and such, and would often make us gifts of their little corpses on the back steps. When she left the house, birds would gather on the wires to screech at and dive-bomb her, while she played it cool. We had her declawed, but she continued to hunt and to get into cat fights.

We finally arranged for LaBelle to be on permanent loan to John's parents, who were home pretty much most of the time, and LaBelle became a pampered pet. After my father-in-law died, LaBelle and my mother-in-law became boon companions. This last year, LaBelle began to require daily dosages of thyroid medicine. Then last week, she ran out of lives. Her heart failed, and she had to be put to sleep. As I walked into the vet's office with her, I thought about all we'd been through together. Now her ashes are in a neat little box decorated with flowers.

I hope I haven't run out of lives.

 

F.E.'s Notes:
Cry if you feel like it.

Write your notes here:

September 17, 1997

Lost lymph nodes

When Julia Child demonstrates how to make a roast chicken the most delicious you have ever eaten, she first slaps the poor bird down on the counter, pulls out all the offending tissue, and begins to stuff butter and herbs and garlic under the skin. When it is ready for the oven, it looks like a chicken with cellulite, or the Michelin Man all bumpy and rumpled. As far as I can tell, this is pretty much the method used by my surgeon to operate on my breast cancer.

After surgery, the removal of the lymph nodes bothered me most. There are lymph nodes in strategic spots all over your body. They purify white blood cell-carrying fluids produced by body organs and tissues. Nerves also run through them. My kids would sometimes get lumps in the back of their necks when they were sick. That was the lymph nodes working overtime to get rid of the extra white blood cells produced by infection. When the surgeon removed my lymph nodes, he disturbed the nerves that ran through them, the nerves that served my armpit and the back of my upper arm -- you know, the part that we are always trying to keep from jiggling. Removing lymph nodes also confuses all the fluid-making organs and tissue, used to sending their refuse to those lymph nodes, and they sit in your body and cause swelling. Sort of like a UPS strike, all the stuff just piles up until it finds a different carrier. I feel as though a soggy towel has been stuffed under my skin. There's feeling in my arm, but it is way under the skin, where I can't reach it. When I put on deodorant, my armpit can't feel it.

It is a strange sensation, and the surgeons say it might improve. This is one of those things they say when they are not exactly looking you in the eye. Translation: once at a medical conference, they heard a doctor say a friend of his knew a woman who claimed to get the feeling back, but he doesn't really believe it. What he does believe is that it won't be too far in the future that surgeons will not have to remove all the lymph nodes. But mine are gone, and as the swelling from the surgery goes down, it does get much better.

The second surgery left a quite different scar on my breast than the first. Before the second surgery, the nipple was just a little off center, with a little indentation under the aureole. The nipple is now quite skewed and points downwards. But the skin is healing nicely, and I am hopeful that because I am relatively young and in good health, I'll get through the rest of my treatments as well as I did the surgeries.

 

F.E.'s Notes:
Ask the doctor about lymph nodes, what they do, how it will be without them. There are certain procedures, taking blood, taking blood pressure, that should not be done on the arm that has had the lymph nodes removed. Your doctor should be telling you these things. Keep asking questions.

Not everyone is fortunate enough to have no prolonged swelling, what is called "edema," after having her lymph nodes removed. I met a woman who had read my newspaper columns about cancer, and then found a lump herself almost a year later. She did have edema, which is fluid collecting in the vicinity of the place where the lymph nodes hav been removed. She found a large swollen area, that was quite uncomfortable. She called the oncology nurse, and was given some instruction in massaging the swollen area to dispearse the fluid.

If you are uncomfortable, or if things aren't going exactly as you think they should be, call the doctor's office. Your doctor doesn't want you to suffer in silence. My sister's friend, Steven Kelly, likes to say: "Pain is inevitable, suffering is optional."

 

 

 

September 24, 1997

Chemotherapy and panic

I started chemotherapy a week and a half ago. Dr. Sorscher, the medical oncologist, had given us several hours of explanation of why chemotherapy was being done, how it would be done, my choices, the consequences of my choices, etc. I was glad John was there with me. My mind was whirling around so fast that a thought would spin away from me out into orbit just to be replaced by another, which would spin away also. I needed John to do my remembering.

I asked the oncologist if he were married. He answered no with much surprise at this question. I explained that if he were married, I would have asked him which choices he would want his wife to make. Choices are difficult for me, even off a menu. When the decision may affect my life span, I find it impossible.

I was offered the choice of joining a breast cancer study, in which the researchers would choose my treatment. Suddenly, I was able to choose. I chose an aggressive treatment. I read all the information printed on two small cards concerning the toxic chemicals they planned to use. Of course all of the reactions that could result were listed, which I memorized.

I actually have gotten though the first chemo session quite well. It is given intravenously, and takes a little over an hour. But I am at the doctor's office much longer than that. I must be weighed (I told the nurse not to tell me what the scale said. I have enough on my mind) so that they can administer the right dose of chemicals. They take tubes and tubes of blood. I once again see Dr. Sorscher, my coach. ("Get in there and run with that ball! You can do it!" I imagine him saying, although of course he is much more serious and intent on conveying as much information to me as I can absorb.)

The nurse who starts the IV and administers the drugs is solicitous. Am I cold? Do I want to watch TV? Do I want juice, water? I have no immediate problems, other than feeling spacey and wired from the anti-nausea drug they administer prior to the chemicals that will eventually, we hope, prevent the cancer cells from dividing and multiplying.

After the chemo session, my daughter Morgan drives me home and puts me to bed. I am feeling fidgety and fragile at the same time. I want John to come home. I wish my mother were alive. I feel very sorry for myself. I can't sleep and clutch the chemo cards until they nearly disintegrate from my sweaty palms, reading all the reactions to look for. "Nausea usually occurs about 6 hours after the drug is given and may last 8-10 hours." I check the clock every 30 seconds. Finally, yes, there it is: maybe I'm nauseated. Oh, but maybe I'm not!

But wait! The other drug card says "Nausea usually occurs within 24 hours." I shouldn't go to sleep! I'd better stay awake to see what happens.

"Discolored urine." I am vigilant. "Complete hair loss." The next day, I take to counting the hairs on my brush. Should I buy a wig? Should I just be bald? So many decisions. I'm getting a headache. IT DOESN'T SAY ANYTHING ABOUT A HEADACHE.

I call the oncologist and he tells me to come in. I show up at his office and am told that he has been called to the hospital for an emergency and I will have to see one of his partners. Maybe I am not having an emergency, I begin to think. Nonetheless, I have to fight rising panic and tears of self pity. As the nurse takes me back to be weighed (don't tell me how much, please), I see my oncologist race by in the hall, white coat billowing out behind him. He sees me and I am gratified to note recognizes me and apologizes. I feel a little better.

Finally, I am shown to an examining room. Soon, a soft-spoken doctor, very carefully and precisely groomed, comes into the room and introduces himself. He shakes my hand. He examines me and tells me I am tolerating the chemotherapy wonderfully. BUT MY HEADACHE, I think. "Your headache is probably a tension headache," he says. TENSION? WHAT TENSION?

"You have too many windows open," he says. WINDOWS OPEN? WINDOWS OPEN? HAVE I ENTRUSTED MY LIFE TO SOMEONE WHO IS NUTS? "Your brain is like a computer," he says soothingly, "if there are too many windows open on your screen, too many things to think about, your computer doesn't work as well. And by the way, stop taking the anti-nausea pills we gave you. They might be contributing to the jitters."

He's calm, he doesn't rush me to the emergency room. I must be all right. I go home, take a few Tylenol, take a nap. I decide I'd better quit reading those drug cards. My appetite is wonderful. In fact, it is insatiable. Every time we sit down to eat, John looks at me cleaning my plate and says, "Well, it doesn't seem to have affected your appetite." One night my craving for a sweet is so bad I actually go out at 10:30 p.m. and buy a pint of ice cream.

My oldest daughter comes home for the weekend. She tells me that I can get a handle on nausea by "loading carbs." I think if that means eating noodles, I can do that really well. She tells me I should get a massage. Hey, this is beginning to sound good. She tells me that my craving for ice cream might mean my body needs it. I wonder why I didn't send her to medical school.

Anyway, the upshot is that a week and a half into this chemotherapy thing, I'm fine. I'm working, I'm sleeping and I am not losing weight. (How can I, when I eat all the time?). I am very lucky, I think, in my unlucky circumstance. I am very lucky indeed.

 

 

F.E.'s Notes:
Always take someone with you to your appointments. Your mind will be a whirlwind of jumbled thoughts. Someone has to remember what your choices are, and write them down for you.

If I had not had a hysterectomy, I would have made sure to ask before undergoing chemotherapy what effect it would have on childbearing. I was surprised that my when my sister, who was just over forty, was being treated, no one ever told her that the treatment would destroy her ability to have children. Forty isn't that old for mothers these days.

Never feel that your concerns are trifling. On the way home from my panic-visit to the doctor that day, I wondered if the office girls were laughing about me in the lunch room. But as I became a regular there, it was obvious that oncologists are not only dealing with your cancer, but your emotional reaction to it, too. If you don't get enough care and reassurance, ask if there is a psychologist you can talk to. If you are in a large medical facility, and you absolutely don't get along with your oncologist, you can ask for a different oncologist. This is too hard to go through if you aren't comfortable.

Write Your Notes Here:

 

 

 

 

 

 

 

 

 

October 5

Shedding

The summer before our oldest daughter, Cassidy, went off to college, she got a letter in the mail introducing her roommate for the coming year. I was a little concerned, because on the form that Cassidy had filled out informing the college what she was like, and what she expected in a roommate, she had checked Neat, as opposed to Messy. When I later asked her whether she really thought she was Neat (we hadn't seen the floor in her room since ninth grade), I was relieved to find out that she didn't really think that she could be considered exactly Neat. Her plan, though, was to snare a Neat roommate who would always want the room clean and probably be willing to do much of the cleaning.

The prospective roommate lived up in the Twin Cities area. They talked on the phone, and Cassidy invited her and her parents down to Winona -- to meet, see the river, share the excitement of going to college. John and I were instructed to be on our best behavior -- clean shirts and all that. We needn't have worried.

The roommate's parents obviously had stepped out of a movie, or at the least a sitcom. Her father was the stereotypical engineer: short-sleeved, too-small white shirt, pocket protector, black pants, glasses taped at the bridge, and sandals made from tire treads. He worked in computers. Her mother was a flower child nearly gone to seed: volumes of long, black, wiry hair streaked with gray, long flowered skirt covered by a serape, and sandals made from tire treads.

The roommate was a pleasant girl who intended to study physics. She was completely overshadowed by her bigger-than-life parents. She did not wear sandals made of tire treads. The pièce de résistance was their dog, a huge white long-haired thing that seemed to take up nearly as much room as a horse. It not only dominated our space, but the conversation and the affections of the roommate. To her parents, the dog seemed an obsession.

I like animals. After all, I put up with our cat for nearly twenty years, and we've had a succession of hunting dogs, one of whom actually made it into the house on a regular basis. Oh, we had a newt, too, and fish from time to time. But this dog. It inserted itself into any attempts at conversation solely by virtue of the volume of its panting. It was like trying to talk while the vacuum cleaner is going. Everything it came within a foot of was immediately covered with fine, long white fur. And relaxation was out of the question. We constantly were shifting positions as the dog wandered amongst us knocking against our legs.

When they left, I heaved a sigh of relief, but too soon. All around me, like cotton from a huge cottonwood after a wind storm, or angel hair strewn on a Christmas tree, was white dog fur. It took a while to remove the traces of the dog from our house. Cassidy, who had angled so smartly for a clean roommate, put up with dog hair all year. Her roommate's parents were lonesome at home -- just the two of them with the dog. So they visited their daughter often -- with the dog. Every piece of clothing Cassidy owned began to look like it was made partly of mohair. When the dog wasn't there, her roommate had a fake fur bedspread that would float hairs around the room in lieu of the real thing.

The next year, each of the girls chose different living arrangements. I asked after the former roommate, and Cassidy said she had become one of the campus "cloak people." They actually wore cloaks instead of coats or jackets and held meetings in the arboretum or on the top of a grassy hill. They practiced some sort of Druid magic/religion, although the roommate confided to Cassidy that she still considered herself a Lutheran.

Last Monday, I woke up, took my shower, and as I was toweling my hair dry, noticed many more hairs on the towel than usual. When I combed my hair, more strands were stuck in the comb. I wore a black sweater to work, since it was a little nippy. During the day, each time I ran my fingers through my hair, out came my hair. My sweater was covered with hair. I was like Pigpen in the Peanuts cartoons, or if you're old enough to remember, like the character in Dick Tracy who was always popping buttons that his chickens tried to eat.

The fallout continued on Tuesday, and I made an appointment to get a haircut on Thursday (assuming I had any hair left by then). On Wednesday morning, my hair was coming out in handfuls. I ordered a wig.

So much for all the well-meaning people, including family members, who said after I started chemotherapy, "Maybe you won't lose all your hair, some people don't, it just gets thin." The little cards, my Chemotherapy Bible, said "complete hair loss usually occurs 2 or more weeks after treatment begins" and then adds, so you don't panic totally, "hair grows back when drug is stopped." I had asked the nurse in the oncology department if she had ever known a patient who didn't lose all her hair, and she hadn't. I wasn't completely unprepared to go bald. I could see myself bald and that was okay. In my visualization of this going bald business, however, I had forgotten about the falling out part.

By Wednesday afternoon, I couldn't stand it. I was shedding as I walked. There was hair in my eyes, hair falling on my desk, my papers. Hair everywhere. I called the hairdresser and begged for an earlier appointment. God answered my prayer, and someone canceled, getting me in after work for the buzz cut.

Carolyn gave me a nice neck rub as she washed my hair. Morgan had come along for moral support. I prepared for the worst (redheads are notoriously vain about their hair). We joked about "G. I. Jane" and Demi Moore. I almost started to like this mental picture of me with a buzz. Finally, it was finished. My hair was about an eighth of an inch long all over my head, except for a little fringe in front that might be a quarter of an inch.

I did not look like Demi Moore. I looked a lot like David Bowie. Carolyn said I needed makeup. Morgan told her I don't do make-up. I got a make-up lesson, bought various colored concoctions and some brushes and I've been practicing, with mixed results. I also bought two hats.

By Friday, I didn't mind being nearly bald. It has its advantages. But when I look in the mirror, my reflected image is all wrong. My head is too small, my shoulders too broad. And in my efforts to feminize my appearance, my daughter tells me I have made some errors. Ditch the Country Western Star earrings, she says, you look like k.d. lang. Ditch the shoulder pads -- you look like a cross-dresser with a thing for Brett Favre. And don't forget your lipstick!

Now I'm dreading the wig. I've never put one on without thinking I looked as though a rabbit were sitting on my head. My store of bravery is being severely tested. Only nine more weeks.

F.E.'s Notes:
If I had it to do over again, I would have paid a visit to my hairdresser as soon as I knew I was going to go through chemotherapy. She and I could have made an appointment to shave my head, we could have ordered a wig that matched my hair color, and we could even have styled the wig to look like my real hair.

Some women only want one wig, because they will only be wearing it for special occasions. Others may want a couple, to give the wigs a rest between wearings.

 

 

October 9, 1997

Breast Cancer Awareness Month?

This chemotherapy is making me grouchy. And people thought I was grouchy before all this. I've been spending a lot of time in the doctor's office, and I try to remember to take a book along. There doesn't seem to be any way to avoid reading magazines in doctors' offices. Since October is designated as "Breast Cancer Awareness" month, many articles about breast cancer seem to catch my eye now that I have it. Magazine writers love to run stories about health. But they find it makes their jobs pretty boring if they run the same stories year after year -- you know, the American Cancer Society's lifestyle to follow to avoid breast cancer, for instance.

By now, most magazine readers know that a woman should eat a low-fat diet, drink in moderation, get plenty of exercise, do a regular breast self examination, get a mammogram yearly when she reaches her forties, and go to the doctor for a physical annually. Pretty boring, year after year, those magazine editors think. To put a little zip in the annual breast cancer story, magazines find a reasonable-looking woman, dress her in a white jacket, and photograph her with a concerned look on her face to hype a new theory. There you have the new exciting October magazine article about breast cancer.

Don't these magazine people ever consider their readers, who might be suffering from guilt and paranoia, thinking that had they only known, they could have prevented or cured this cancer in their bodies? If only I'd known, I'd have been practicing yoga (or whatever the preventative) for the last thirty years. If only I'd known, I'd have been taking the rare herb found only in the Amazon (or whatever the cure), instead of this chemotherapy.

When I first began my doctor visits after being diagnosed with breast cancer, I didn't realize that the editors of these stories in Redbook or Good Housekeeping were just women bored with their lives in their Manhattan penthouses and their estates in Connecticut or on Long Island. I thought these people had stumbled upon something, and here I was in the middle of the Midwest, having developed breast cancer, because I hadn't been reading New York magazines often enough.

The first article I read, for instance, was about the cancer preventing agents in wheat bran. WHEAT BRAN!? Do you mean to tell me I've been eating OAT BRAN every morning for years now, and I should have been eating WHEAT BRAN? Why didn't I know this? How could they have let me through the checkout at the grocery store with all this OAT BRAN in my cart? Is this some conspiracy foisted on me by the WHEAT lobby? There should be a special task force to look into this! What is that Janet Reno up to out there in Washington?
But wait! It might not be the wheat bran at all. Here's an article about caffeine's role in causing cancer. There should be a warning label on my cappuccino. How could I have thought a cup of tea was relaxing? What have I done to myself. Here's another one about fruit juice versus the whole fruit. And another one about the wax on turnips. But I CAN'T have eaten too many turnips. My parents made me eat them. It's not my fault!

According to another article, I should have been out in the woods picking wild herbs to eat. Another says I should have been kayaking, not biking. Kayakers rarely get breast cancer. And I should have been doing it three times a week for thirty minutes, not every day for twenty minutes or forty-five. Here's another article that says I can blame it on my ancestors. But I loved my grandparents. It must have been some ancestor I never met. Oh, no! Women who spend a lot of time in the sun don't get breast cancer. I tried! I tried to lie in the sun with all the other girls, but I quit because I always got sunburned, and I read somewhere that girls who spent too much time in the sun got wrinkled and skin cancers. Had I only known!

Finally I decided that if I didn't quit reading health articles in magazines, I would either go crazy or give myself a heart attack from the anxiety. No sooner did I quit the magazines, than in the mail came the pounds and pounds of Christmas catalogues. And do you know what? I BOUGHT THE WRONG NO-FAIL, EZ WATERING, GUARANTEED NOT TO TIP OR LEAK OR MAKE DENTS IN THE CARPETING Christmas tree stand. How can life become any more complicated? It's no wonder I'm grouchy.

 

F.E.'s notes:

Don't forget your local chapte of the American Cancer Society. Our local chapter has wonderful services.

They will give wigs to people who need them. Wigs are donated to the local chapter, our local vocational school cosmotology students style them. They have a program called "Look Good, Feel Better," which you can attend and learn make-up tricks from cosmotologists.

They can help you arrange transportation to and from your treatment sessions, if you are unable to drive yourself.

After a mastectomy, if you wish, the American Cancer Society will send a volunteer to show you exercises to help you regain full use of your arm.

If you need home health care, the Cancer Society will steer you to the right agencies. They will also sometimes be able to send volunteers to your home to help you with things such as vacuuming or shopping when you are unable to do them yourself.

If you are experiencing some depression, which would not be rare in cancer patients, many chapters will help you find a group or therapy that may help you. If you are the sort of person who needs to find others to share your experiences and fears with, call the American Cancer Society and ask them to refer you to a support group.

October 15, 1997

Go into it baldheaded

Men don't complain about things the same way women do. Men don't sit around and grouse that no matter how many times they hose out that dog pen, the dog just goes and messes it up again. Men don't grumble about the price of Sports Illustrated of the presence of an empty toilet paper roll on the holder. Men seem to accept some things as inevitable, or (my theory) they just don't pay enough attention to things to be able to complain as thoroughly as we women can.

I blame it on men, then, that I had no idea of the inconveniences associated with being bald. I bought a wig, but as my old college roommate said, it isn't nearly as much fun to wear a wig when the alternative is being bald. There was a period back in the sixties, I think, when wigs were all the rage. Eva Gabor sold a million of them. Back then, if a woman wanted to be well coiffed, she had to sleep with rollers in her hair, puff if up by teasing it, and then spray the whole mess until it was as hard as peanut brittle. Wearing a wig seemed so sensible.

I've had a wash-and-wear hairdo for most of my life, and this wig seems like an awful lot of work. First of all, there's so much hair on it. Secondly, I thought it was the perfect color, sort of a faded red, but every time I wear it, people say, "Oh! You're going blonde!" Thirdly, it's hot. And fourth, when the wind messes up your real hair, you are aware of it and you smooth it down. When the wind blows your wig, you don't feel it. Several times I've noticed by glimpsing myself in a store window that the hair on my wig has adopted all on its own a style much like that of Seinfeld's Kramer--straight up in the air, as though I had gotten a big scare.

People tell me to buy a couple of cute hats. Well, hats are made for people with hair. A session trying on hats can be demoralizing. Kids look cute in Dad's big hat tipped over one eye. Grownups just look eccentric or even demented. A baseball cap looks adorable on my daughter, but she has about a foot of hair that hangs down the back of it. I have nothing that hangs out of the hat except ears. Ears--in or out of the hat? Bet you never thought about that one.

I bought a black hat that I thought looked pretty chic until I saw myself in the rearview mirror. In my black hat and sunglasses, I looked like a has-been movie star on my way to the Betty Ford Clinic. I finally found a hat small enough to fit pretty well. Even got it on sale, probably because it didn't fit anyone with hair. It's brown, which is a nice color, until you try to wear it with a purple coat.

I really feel most comfortable walking around bald. You'd be amazed at the looks you get. Admit it, now, when you are in a big city and see a guy passed out on the sidewalk and can smell the stale booze about a hundred yards away, you take your kids by the hands and cross the street, right? You don't stare, but your kids do because they don't see this kind of wierd stuff very often. That's a little bit like the reaction I get to my bald head from everyone except the tattoo-pierced-tongue-and-eyebrow crowd, who don't even give it a second look.

Until Sunday, I didn't realize how cold a bald head can get! Those low temperatures on the weather map have a whole new meaning. My head got so cold when I was trying to sleep Sunday night that I dreamt about Christmas and Mama in her kerchief. Cold is nothing until you've been out in the rain with your bald head. It's amazing how well hair protects you from the rain and keeps it from dribbling down into your eyes. All this time I thought hair was something to cut, curl and color. I had no idea how great a role hair played in the comfort level of my life.

Being bald has its up-side, too. I can get ready in the morning so much faster. I don't have to spend precious minutes getting unruly locks to lie down. I don't have to shampoo, condition, gel, mousse, comb, brush, moisturize, neutralize, replenish the oils, blowdry, plug in the curling iron, or worry that it will go straight or frizz up. (Since chemotherapy affects all body hair, I don't have to shave.) On my trip to the grocery or department store, I just breeze right by the several aisles devoted to cosmetics for the hair. I'm not tempted by rows of barrettes, headbands, clips, bows, or elastic bands. I did look twice at some baby bows with a patch of velcro on them sold to mothers of hairless baby girls.

However up the ups are, I'm afraid they don't outnumber the downs. If men weren't so stoic, I would have known this. I console myself with the thought that whereas if John wants a full head of real hair, he'll have to get a transplant or start using Rogaine, my hair is supposed to start growing back at the end of November. Until then, unless you catch me at home or in the office, where the temperature is pretty much controlled, you'll see me in my wig or my hat. For now, as my hair continues its disappearing act, I'm beginning to look less like David Bowie and more like Daddy Warbucks.

F.E.'s Notes:

Find a hat store. It might be the local sports gear store, it might be a wig and hat boutique, it might be an upscale Fifth Avenue department store. Have some fun.

Contact an accountant. Ask if you can deduct expenses associated with your breatst cancer, such as wigs, and transportation to and from treatments. Ask what receipts you must keep.

October 17, 1997

Chemotherapy or chemotorture?

"You're such a strong person." "You are so brave." "Why do bad things happen to good people?" I am thoroughly sick and tired of being told how strong and brave I am. All I really want is for someone to hug me, soothe me, put a cool hand on my forehead, sing to me, take me back to the times before all of this pain entered my life. I am not strong. I am not brave. And, sometimes I think I am not a good person; I think that all this is punishment for some transgression I have made against the gods.

I look at the calendar and see it is almost time for my next chemotherapy. I am just beginning to feel halfway human again, and I dread going back, starting all over. I want to run away, go somewhere where no one will find me. Let my hair grow back, lay on the beach in the sun and feel some warmth finally.

It is so dark here in these darkest of days, so chill. I am cold all the time. I wear a crocheted cap to bed at night. I wear flannel pajamas. I wear polar fleece socks that I'm supposed to wear when I ski or snowshoe. But I'm too tired to have fun, so I wear them to bed. What must John think when he comes to bed, with me all bundled up like Ma in the "Night Before Christmas." What must he think when he sees me getting ready in the morning: bald head with scraggly hairs here and there, chalky skin, deformed breast, tummy sagging from no exercise, deeper wrinkles. These were supposed to be the days in our life that he and I could be free, have some fun. Kids are grown, we finally are done paying for college, we have some extra money for traveling. But instead, here he is, chained to me, to this hag I've become. What must he think?

When I go back for my next chemotherapy session, this is what will happen. First I have to have "lab," where they take blood and count my blood cells, I guess. Of course they can't take blood from the arm on the side of my lumpectomy, because there are no lymph nodes and they fear infection. Since they've been taking blood once a week since I began chemo, my poor arm is black and blue. The last time I was here, the technician had a hard time getting the needle in the vein, which prolongs the discomfort. The last time I had blood drawn at the clinic at home, the needle hit a nerve or something, and it hurt so much I cried. I hate crying in front of these people, but sometimes I can't help it.

Next, after waiting with other cancer patients, in various stages of ill or good health, I am weighed and have my temperature taken. I tell them not to tell me how much I weigh. I have enough to deal with, without thinking how fat I am, and out of shape. The oncologist asks me how I feel, takes a look at the site of the incisions, and does a manual examination of both breasts. I am tolerating the chemo very well, he always says. I think, "That's what you think! I hate this! This is intolerable!" But then I remember the other people in the waiting room, some too sick to get their prescribed chemotherapy, and I guess he's right.

Then into the chemotherapy room. I sit in a lounge chair in a little room that has not much more than a sink and a television. The nurse comes in. I get pillows and blankets to make me comfortable. She arranges all of the chemicals, some hanging in bags. One, the worst, adriamycin, comes in a huge thing that looks like a big turkey baster, but with a needle on the end. It is filled with stuff that looks like strawberry jello. My stomach turns when I see it.

She looks my arm over, turning it this way and that. Then she taps on some veins. Then she looks at the chart again, where they have written down where they put the IV in last time. Then she taps my arm again. Then she wraps my arm in a hot towel, wraps plastic around that and puts a blanket over it. I wait, I surmise, for my veins to pop out.

When she comes back, she looks around for the best bet, vein-wise, and with her plastic gloves on, sticks the needle in, hoping for a hit. I look away and try to relax the arm she's working on. My other hand makes a fist, and I dig my fingernails into my palm, hoping the pain I inflict on myself will distract me from the needle probing around.

I guess my veins aren't very cooperative, which surprises me. They certainly show, as light skinned as I am, and they stick out on my legs! Sometimes the first nurse has to give up after so many tries, and a new nurse comes in, and we start all over again. Finally the needle is in and pushed up into the vein. It gets taped in place, and I'm told that if anything hurts I should tell. Sometimes there's a fine line between discomfort and pain.

The IV starts dripping. It is cold, and I feel cold from the inside out. I get a nauseous, hollow feeling, and my eyes feel as though they are jumping from side to side. Reading is hard. TV is worse than sitting and staring. I stare at the wood door, which is left open just a crack when the nurse leaves. The whorls in the pattern of the wooden door become a sinister face, a monster guard who has been sent to watch me, to make sure I don't move, to make sure I stay put and don't tear the needle out of my arm and run home.

Pretty soon, the nurse comes back to check and then starts pushing the red jello into the IV. I'm feeling worse. I ask for water. I'm supposed to drink lots of water. I don't really know why, but I suppose it is an effort to dilute the stuff as it goes through the parts of me that aren't cancerous. Sometimes the nurse and I talk, small talk. Sometimes, I just want to be quiet, close my eyes and think. Other times, she tries to educate me about the changes I am going through. She tells me that my resistence is down, and I should avoid sick people, crowds, and I should be sure to wash my hands a lot. I vow to follow these instructions, because I don't want to have to postpone any of my chemo treatments and prolong this ordeal. I want the chemo dates to come, even as I hate the thought of them.

Finally, my treatment is done. Morgan comes to drive me home. I still am cold from the inside out, shivering. I want to turn the car heat up. I am cranky. I criticize her driving. I go home and go to bed. It occurs to me that I have no idea what my family does about eating supper.

In bed, in my flannel pajamas, in my little woolen cap, in my socks, holding my latest mindless mystery novel, I cry for myself. I cry because I know that in a couple of days, I will feel very sick. I will get weaker. It will be hard to climb the stairs at work. It will be hard to concentrate. I cry for my family, who don't know whether to be cheerful or concerned, or sad. I don't know what I want, either, except for this to be over. Then what?

 

F.E.'s Notes:

There are going to be some very down times through all of this. Just keep in mind the Little Engine Who Could, "I think I can, I think I can."

Ask for anti-nausea medicine. Make your husband hold you. Ask your kids to put lotion on your feet. Call a buddy from your support group. And sleep, you need it.

Write your notes here:

 

 

 

 

 

 

 

November 6, 1997

After three chemotherapy sessions

What are some of the things I feel and think about now that I have breast cancer, things that are too difficult to talk about face to face?

First there is my breast. When I found the lump, found out it was cancer, it seemed so easy to just have it cut out. After the first surgery, my breast healed pretty well. It was a little misshapen, but my husband and the doctor told me that when the swelling went down, the scar would be barely noticeable.

Then I needed a second surgery, to go after "clean margins," which means that the edges of the excised skin must be free of any cancer cells. I was lucky that the doctors decided to go back in, since there was indeed more cancer -- both a larger tumor and a sprinkling of little invasive cancer cells.

When the swelling from the second surgery went down, my breast was quite deformed -- the poor nipple hanging down at a skewed angle toward the floor. I know, a lot of women deal with mastectomies and do just fine with this body image thing. But I don't feel desirable any more. The pattern and substance of my lovemaking with my husband is as skewed as my breast. It doesn't seem to bother my husband, but it bothers me. I'd as soon keep covered up. Seeing this sagging, tilted breast reminds me that I am aging, and I wonder how the sexual, sensual side of me fits into this new journey. Seeing this misshapen breast also reminds me that I have cancer. And cancer scares me.

I am sick from the chemotherapy. I am weak, too. For about a week after the treatment -- adriamyacin and cytoxin -- I am nauseated. Some times are worse than others. There is a horrible taste in the back of my throat, in my mouth, as though I had just vomited, although I haven't.

I think food will help, food in my stomach. I eat, and sometimes it goes down well, then all of a sudden a bite will turn to sawdust in my mouth. I wonder how I will get it down. Sometimes I can't swallow. That happened the other day as I was driving my car, and I thought I might just die. I finally forced myself to take a deep breath and try to calmly swallow. I lived. When I got home, I went right to bed.

After a meal, my insides rumble and hurt for hours. I have horrible gas. Nothing seems to be working correctly in there. I try fiber pills, I try Pepto Bismol. I try eating blander things. Finally I get diarrhea that is so bad I have to change my underpants a couple of times a day. I seem to have no control, no say not just over my bowels, but over my life, my being.

People smell horrible. My husband, my children, my co-workers, strangers. Sometimes I have to get out of bed in the middle of the night, the smell of my husband's breath is so nauseating. But I am lonely in another bed by myself. I sleep with a bar of soap near my nose, to mask the horrible smell of the man I love, and who loves me even during all this. I smell bad to myself. I wonder if others can smell it.

I am weak. Climbing stairs makes me light-headed. For that I went in and had to be re-hydrated. Even at other times, moving is hard. I have no energy. I have no life. My face is ashen, my wrinkles deeper, my nose runs, my eyes are rimmed in red. I barely recognize myself, and curse this disease that took away my self. I continue working, but I don't care about what I do. In the office, everyone is all excited about some problem or other. How can we solve it? Hurry, hurry, and I am thinking: This is a problem? I'll tell you what a problem is, I have cancer and I feel like shit!

I am normally a person who does not like being alone. But now I like to be by myself, in bed, sleeping or reading. I don't want to have to answer the question: How are you feeling? The answer is really, I'm feeling terrified and terrible. I'm feeling like a failure and a burden to my family. I'm feeling as though I've been abandoned. Sometimes I wish I were dead. Sometimes I am so frightened of death I can barely breathe. It's easier to be alone. There is no one I want to weigh down with these thoughts. I am also afraid if I am too much of a complainer and a loser, I will lose those who love me. Friends call, and I tell them I'm OK. That's what they want to hear. Blah, blah, blah. Now they've done their job, called me and I'm OK. I want my mother to come and comfort me, but she died last February. Oh, aren't I sad? Aren't I miserable? Do you feel as sorry for me as I feel for myself?

My sister who has had cancer calls often, gives me pep talks. But I am her older sister by ten years. I still mother her, I don't tell her how bad I feel. My other sisters pretend I'm OK and don't call. My brother calls once a week, and describes his life on a little farm in Vermont -- a lovely wife, some sheep, mountains, lots of snow, jokes about the sheep, the weather. That's good.

I look at a bookmark a friend sent me. It is a prayer of St. Teresa of Avila, a Spanish saint of the Roman Catholic Church. She was a mystic, a philosopher, one of only two women in all of the history of Christianity to be named a "Doctor of the Church." She says, "Let nothing disturb thee, nothing affright thee; all things are passing; God never changeth. Patient endurance attaineth to all things; who God possesseth in nothing is wanting: alone God sufficeth." She's right, I know that without being a mystic, a philosopher. All things do pass. Time heals all wounds. Soon, a problem at work will be my problem again, too. Soon, I will forget this fear, this sickness, and live easily again, but these are my devils to do battle with now. I can win, I just have to fight harder. Don't tell anyone how I feel, because I'm hoping I won't feel this way for long.

F.E.'s notes:

It's almost over.
Write your notes here:

November 10, 1997
Massage

I've discovered massage. After my chemo sessions, I get up every morning thinking how lovely it would be to have a masseuse rub my aching shoulders and knead those tightening muscles. My joints seem to always ache, and I generally feel unwell. Finally one morning, I called a massage therapist. $18 for 25 minutes, she said, is what it would cost. Well, I figure that since I lost my hair, I must have saved hundreds of dollars in haircuts and hair products. So why not treat myself to a massage. The appointment was set for the next week, Tuesday, right after the deadline for our Wednesday paper.

When the time came for my appointment, I threw on my coat and rushed over to her building, ran down the stairs, and into the therapist's office. It was lighted gently, no fluorescents glaring down. The decorating was simple, inoffensive and soothing. Audio tapes of mellow music and nature sounds played softly. I took a deep breath and felt a muscle pull between my shoulders.

The masseuse has a subdued voice and manner, and a very strong handshake -- a good thing in a masseuse, I thought. She led me to a strange padded chair that looked like it started out life as one of those little chairs shoe salesmen used to sit on, but grew in strange directions. The end effect is that it supports you in a semi-kneeling position, arms leaning forward and supported as well, with your face stuck in a little donut-shaped padded thing that lets you relax face down and breathe at the same time.

I took off my coat and my watch, leaving the rest of my clothes on (this isn't like the movies). I was scheduled for a back, neck and head massage. So I settled into the funny chair, ready to get this show on the road, resisting the impulse to look at my watchless wrist . The masseuse was in no hurry. She padded around quietly behind me, doing something or other. I squirmed a little in the seat. Then she came around to face me and covered the face donut with a cotton cloth.

She disappeared again, and came back with two little bottles. First she held one out to me to sniff, then the other. Which one do I like, she asked. I picked the bottle with the blue-green writing. "Ah," she said, "the calming fragrance. You need calming, and your subconscious (or something like that) chose the calming fragrance." This was true, I thought, but I am not one to hide my feelings, and it doesn't take a psychic to tell that I am a little wired.

After she dotted the fragrance on the cotton covering of the face donut, she told me to rest my face on the donut. Then she told me to relax. RELAX? I haven't relaxed since 1970, and this woman wants me to relax. I gave it a try. I just let myself go until I thought I was practically a rag doll, but the minute she started kneading my back, I could feel that I was quite tense. The music started, the room was calm, and my eyes were closed and her hands felt great on my poor back. As she started the massage at my neck and worked her way down, I thought, "Oh, jeez, what if she touches my waist! I'm so ticklish I'm sure I'll start laughing." But she said in her quiet voice, "Inhale deeply and exhale. As you exhale, let the cares of the day leave you." By the time she got to my waist, I was beginning to drift off and didn't even chuckle.

The tape was having a mild thunder storm, and then came the sound of a steady rain on the roof. My memory dredged up thoughts of vacations at my parents' Vermont mountain cabin, where thunderclouds dripping rain appear suddenly over the crest of the mountain, scud across the sky, and drift away as suddenly.

After she gave my back a thorough workout, she moved around to my bald head, neck and the tops of my shoulders. I was floating; sounds from the street and other offices were muffled. Then she started on my right arm, from the shoulder to the tips of my fingers. When she finished, she said softly, "Feel the difference between your right arm and your left arm." My right arm felt a hundred miles long, stretched lazily like a piece of taffy. My left arm still felt glued to my side.

The tape moved on from the thunder storm to waves lapping against the shore, little birds singing, and an orchestra playing a ballet. I could see myself dancing across a Mississippi River sandbar on a hazy morning. Then she said, "Put your arms down at your sides." I did. She anointed my temples with the calming fragrance and gently massaged my forehead. After a short time, during which I sat eyes closed, arms hanging limply at my sides, feeling something I hadn't felt in a long while -- relaxed -- she told me to put my feet down on the floor and get up when I was ready. What I really wanted to do was to roll right into bed and sleep all night. But instead, I got up, wrote the check and made another appointment, wondering if she gets a lot of marriage proposals.

 

F.E.'s Notes:

You should check with your doctor before you get massage therapy. You may have to avoid deep massages. Be sure you ask, don't rely on your massage therapist. Most of them are very knowledgeable, but you wouldn't want to take the chance.

Write your notes here:

November 12, 1997

Still Grieving

Tomorrow it will be two years since our son Jake died. Am I still grieving? Yes, but differently.

In the days and months following Jake's death, I wished I had been born blind, so that I wouldn't miss seeing him, his amazing blue eyes, his curly blond hair, his changing adolescent body. I wouldn't have to see his room, his shirts hanging in the closet, his shoes on the floor. I wouldn't miss the happy feeling of spotting him in a crowd of kids. I wouldn't miss sitting across from him at the dinner table, watching his antics as we pulled him behind the boat, sneaking a peek at him sleeping before I would wake him up in the morning.

I wished that I had been born deaf so that I wouldn't miss his voice, his jokes, his "Hi, Mom!" when he saw me, his "What's for supper?" when I got home from work, his piano and trombone music. I wouldn't miss his constant chatter that we teased him about.

I wished I had been born with no sense of smell, so that I wouldn't miss the smell of him, after a shower, after football, after being out in the snow, getting into the boat from the waters of the Mississippi River, wearing his new cologne.

I wished I had been born with no sense of touch. I wouldn't miss his soft skin, his kiss, the feel of a barely noticeable mustache beginning to grow, the back of his neck after a new haircut. I wouldn't miss his hugs, snuggling with him while we watched "Northern Exposure" together on cold winter nights, sitting next to him to read the paper.

As the days and months passed, though, the wound became less raw. As time went on, my body, my fickle physical being, lacking the stimulation necessary to retain those physical memories, began to forget the actual sight of him, his smell, his sound, his touch. My mind would search my body for those memories and come up empty. Like the pain of childbirth, this pain of child death began to fade in memory.

But, like my memories of the joy of childbirth, the anguish of Jake's death remained in my mind. I still cry when I think of losing him, of his depression-tortured mind that led him to kill himself. I still wake in the dark of night and am nearly drowned by the wave of sorrow that engulfs me when my consciousness snags on the thought of his death. My heart still constricts when I come upon something of his, or a picture of him, that I didn't expect to see.

Now that my body doesn't dominate my thoughts with its tortured grieving, I have begun to know my son not only physically and mentally, but with a new spirituality. I don't mean spiritual in a religious sense. I don't mean that I see Jake as a holy person, an angel. Rather, I have gotten to know his spirit, his soul, his psychic energy. I don't mean that I will be trying to contact him in the "spirit" world. Simply, the longer he is separated from me physically, the more I am beginning to understand that his spirit still lives.

I am still grieving. I will never "get over it" as some people will urge me to do. The death of one's child is not something to be gotten over. It is a thing that one learns to live with, learns to adapt to, incorporates into this physical life of ours.

But with my grief now comes this new knowledge of Jake's spirit, something that until now I knew only as an intellectual possibility. The pain of Jake's death, like the pain of disease, I know will die when my body dies. But my soul will always be linked to the souls of those I love, as it is now with my son's.

 

November 19, 1997

Being thankful

In spite of the unseasonably cold days we had last weekend, I am looking forward to the coming weeks -- and Thanksgiving and Christmas. This week is my last chemotherapy treatment. And I am very, very glad that it will soon be over.

As it turns out, losing my hair was the easiest of the effects of the chemo to handle. My wig came in handy in social situations. A couple of weeks ago, we got together with friends I hadn't seen since I started the chemo, and they said they were amazed at how fast (and blonde) my hair grew back! I met a woman who had gone through treatments for breast cancer a year ago, and she asked me how it was that I was going through chemo and hadn't lost my hair.

So being bald isn't so bad as long as you have a warm hat and a nice wig. My sister-in-law from Vermont sent me three fleece hats that her sister made, and they work wonderfully, even at bed time, when John insists on opening the window just a crack. What is it with these people with Swedish and Norwegian blood and their love of the cold? My hairdresser cut about half of the hair off my wig and styled it much like my old style, and it doesn't seem so awful.

As for the rest of the effects of chemo, it happened just as they wrote on the little cards they gave me.

Lack of energy was a problem after chemo treatments. I am lucky that I'm my own boss and could go home for a nap or put my head on my desk whenever I needed it. My sister, a nurse, had to quit her job during cancer treatments and is now trying to decide if she'll ever be able to go back to a physically strenuous job like hers.

I experienced all the rest of the stuff they predicted -- nausea, mouth sores for which they gave me horrible pink medicine to swish around in my mouth and swallow. All it does is numb my throat and make it hard to swallow. The skin on my fingertips is cracked and so sore it hurts to type on my computer. I nearly drown myself in lotion, but nothing helps. A normal person might have lost weight on such a regimen. Not I! I'm one of those who doesn't have to remember whether to feed a cold or starve a fever. I just continue eating no matter what, my reasoning being that I love to eat, and if I go, I want to go happy.

I'm looking forward to having everyone over for Thanksgiving, my favorite holiday meal of all. All I have to do is cook, and I won't wake up in the middle of the night before the holiday and wonder where I hid gifts. My mother always would forget several gifts, which she would then give out in dribs and drabs all during January. It drove her crazy, but we liked it because it prolonged the holiday.

Now I am the mother. With the loss of Jake, the house seems empty, even though there will be twelve of us for dinner. My daughters help me cook. My hands are so dry and cracked that I have bought latex gloves, like they wear in hospitals, to cover my hands so the food won't make them sting. I bought large, because my hand seemed to fit the outline on the box, and they slip and slide all over the place. Finally I put rubber bands around the gloves at my wrists to keep them on.

I watch as Cassidy and Morgan get to work in my kitchen, and I know that without their help I wouldn't have been able to do this. I am tired and have to sit down now and again to save my strength. My mother-in-law and sisters- and brother-in-law come with their little kids. The kids haven't seen me since Halloween, when they came over to carve pumpkins, and when I see the looks on their faces, I realize they haven't yet seen me bald. I couldn't wear my wig, because I was warned that heat from the stove and oven could melt it! But the kids took it in stride that I was suddenly bald. I suppose it seems perfectly normal to them that if men can go bald (and they have a way of doing that in the Edstrom family) then why not Aunt Fran.

Dinner is wonderful, a success. I feel real, like the old me. I can still cook, although I have pretty much given it up during the chemo treatments. Sometimes all I want are crackers, sometimes I crave french fried potatoes. Sometimes meat tastes dead in my mouth, and I have to spit it out. My friend Dort has made little turkeys out of cookies, marshmallows and candy corn. They are a hit and lead the conversation away from my cancer.

When my nephew is done eating, and getting restless, we play a game. He throws my hat and tries to get it to land on my head. Then I try to land it on his. It's a great game, lots of laughs, and my hat, meant to cover my baldness, is just part of the landscape.

I see when I look around the room at the flushed, happy faces of my family that I have a great deal to be thankful for and even during this cancer trial very little to resent. I don't want to die. I am thankful for what I have. I can see that having cancer has made me want to savor my life, to stare at John, at the girls, to engulf them with my love for them. Life couldn't have been meant to be any more than this, could it?

 

F.E.'s notes:

Cooking Thanksgiving dinner was important to me. If it isn't important to you to exert yourself for an occasion, don't do it. Someone else can do your job (maybe not as well, but that should make you feel better). Order a pizza! Go to a restaurant! You get to call the shots. You have cancer!

If you are going to exert yourself, plan and pace yourself. The last thing you want to do is to overexert and make yourself sick. If you are sick, your treatments may have to be postponed.

Write your notes here:

November 23, 1997

Health care

After college, I got a job as an insurance company bookkeeper. Not only was this my first introduction to bookkeeping, to business, and to the insurance business, but it was the first time I had to take care of myself and manage my own money. One of my benefits was a health insurance policy that, as the other employees quickly clued me in to, would not pay for doctor visits but would pay for visits to the emergency room. In the dead of winter, I got what I was pretty sure was strep throat. So in order to get my insurance to pay for the visit, I just got myself right down to the Hennepin County Hospital emergency room.

Whoa! This part of my education had been sorely neglected in Dr. Moynihan's office waiting for my booster shot or at the college infirmary. The waiting room was a depressing basement room with dirty beige walls, exposed pipes, and a worn red and beige tiled floor with various suspicious splash marks. I glanced into it as I went to the registration desk, where a harried and curt receptionist listened briefly to my complaint and took my insurance information with a roll of her eyes and a "Siddown'l we call you." It was clear that her diagnosis was that I didn't need to be there.

There wasn't an empty chair in the place. There were people of every sort with as many different complaints you could ever see in Minneapolis, Minnesota. Runny-nosed croupy kids were whining and crying. Pregnant women tried to sit comfortably. Old people hunched in their chairs and looked about vacantly. There were people with casts on just about any body part that can be broken, people holding cloths against black eyes, split lips, and various other wounds. Anyone who could still sit up unaided and was not losing more than about a quart of blood an hour was in the waiting room while the really sick people were being taken care of by doctors, nurses, interns and orderlies in uniforms ununiformly spattered with body fluids.

As I stood waiting for a chair, the doors from the ambulance entrance never quit swinging. Attendants wheeled in accident victims, shooting victims, knifing victims, moaning, groaning, wailing, and sometimes eerily quiet, who were immediately put into curtained cubicles.

I concentrated my attention on the waiting room, where I couldn't help but notice a man in a wheel chair, who was beginning to make a keening animal sound. A woman with him tried to soothe him from time to time with a vacant pat on the shoulder but mostly ignored him. His color was like gray modeling clay. His hair grew in scattered patches and was clumped about his head. He was covered with scabby sores around his mouth and nose, was shaking uncontrollably, was leaking from just about every orifice, having soiled his pants back and front. I couldn't believe he wasn't being rushed to the front of the line.

After a wait of an hour or so, my name was called. I gestured toward the man and whispered to the aide, "Shouldn't that man be taken in first?" She gave him a flicker of a glance and said, "Drugs" and told me which cubicle to go to. I sat on the chair in my little curtained room, thankful to be separated from the shocking scenes in the waiting room and the hallway full of abandoned gurneys. A young man in a white coat stuck his head in briefly and said, "Minute," and I watched his shoes as he entered the cubicle next to mine. When he went in, his coat caught on the curtain and pulled pulled it open, exposing the roped and purpled legs of an old woman. Her shoes were askew, and too light for the time of year. Her stockings were torn and her legs scraped.

The man shouted questions to her, but the volume didn't help her understand. It became obvious that she had been found wandering and hurt and knew absolutely nothing about her identity. The man said something unintelligible to an aide and abruptly pulled aside the curtain to face me and say, "Well?"

"Strep throat." He looked and scribbled a prescription, hurried out, and I hurried out after him. I left feeling much worse than when I had come in, and hurried home to my warm bed and a fitful night of bad dreams.

Last week I had my last chemotherapy treatment, something I dreaded and wanted at the same time. My chemo treatments are administered in calm, quiet rooms, with calm, soothing nurses giving me the poisons that will kill these cancer cells. As I drove home with my daughter, I thought of that confused and abandoned woman and gave thanks for my warm family and friends. I thought of the addict in the wheelchair. The side effects from chemotherapy are much like the results of drug addiction, complete with bruised and needle-tracked arms. His journey into this hell, I imagine, began with a search for happiness and joy and feeling good. That's what I'm looking for, too.

 

F.E.'s Notes:

Count your blessings.

December 14, 1997

Hope

Have you ever waited and hoped for something to happen, or a special day to arrive, and then found that when it finally was there, your anticipation did not match reality? That's how I feel about being done with chemotherapy. I couldn't wait to be done. Now I am, and obviously my life isn't as bad as it was when I had those poisons coursing through my body. But it isn't as good as I had anticipated either.

I'm still bald, although people swear they can see more hair. (Has it ever occurred to you what life is like with no nose hairs?) And, I have finally realized that my life will never be the same as it was before I knew I had cancer.

Getting cancer is a lot like getting into a bad marriage. It isn't easy to get out of. Even if you get a divorce, you'll always have been married. You'll always have an ex-husband. You'll always have ex-in-laws. If you have children, those children will always be half his. And there's always the possibility he'll show up again. After you get cancer, even if you cut it out, poison it, radiate it, or whatever you do to try to get rid of it, you'll always have had cancer. No matter how long I live, I'll have had cancer.

And I'll always have the chance of getting it back.

"How will I know that I don't have another cancer?" I asked my oncologist. Being an earnest person, he took down a big blue book from the shelf and turned to the pages that dealt with the recurrence of breast cancer. In that chapter is recorded as close to a consensus as a group of breast cancer specialists can come to figuring out the best ways to detect cancer recurrence. What it comes down to is that I have to trust to the same methods of detection that nearly failed me before. These are the same methods of detection that, except for the doctor's examination, did not conclusively tell me that I had a lump last June and did not detect that cancer until I had probably had it for many years. Naively, I had assumed that these blood tests I've always read about in women's magazines would somehow wave a red flag the minute a cancer cell might reappear. I had naively assumed also that as horrible as chemotherapy is, if I would only go through it, it would certainly kill any cell even thinking about becoming cancerous.

As I listened to my doctor tell me the percentages of cancer recurring after this and that treatment (And of course these can't be precisely applied to me, he says. I am "unique."), I found myself wishing that I liked to gamble, had studied the odds. Is a twenty percent chance good? Is it bad? How about fifty? How about one? How much do I want to give for another one or two percentage points? Just the fact that I was sitting in an oncologist's office would probably indicate I shouldn't rush right out and buy a lottery ticket. In fact, in the last couple of months, that old blues lyric has often popped into my head: "If it weren't for bad luck, I wouldn't have no luck at all."

So chemotherapy is over, but cancer isn't, and I'm still faced with decisions. Will I take this path that might offer me a better chance of no recurrence, but a less palatable lifestyle? Or will I take this path, that is more chancy? Where is a path labeled "Cure"? Or a path labeled "Before all this happened"?

I met a friend in the grocery store, who has also had breast cancer. She told me that the first time she went to the meat counter after her cancer surgery and treatments, she was faced with a sign for "Chickens -- Parts Missing." I don't want to have "parts missing." I don't like these new challenges life hands me. "I can't tell you what to do," said my doctor. But I want him to, I think. I want someone to tell me what to do. I want someone to say, "Just do this. Just take that." I want someone to reassure me, to say, "It'll be all right." Then I think of my mother, in the hospital in one of her many crises during her last year. I sat next to her, holding her hand. She told me not to cry. "I'm dying, it's true," she said. "But not right now."

Aren't we all dying, just not right now? Isn't this challenge of mine what is supposed to happen? Does it matter much which path I take? Or am I required to have done everything I can to improve my chances of living as long as I can? I think I am. That's why I had surgery, went through chemotherapy. It's just that I wanted those to be the only painful decisions, the last decisions, the last hurdle. But, there's never a last hurdle, is there, except in trials we devise for ourselves. Life is devised for us, whether we believe by God or by chance. And the last hurdle is not something most of us pursue. On the contrary, we drag our feet, we jog in place, we bide our time, we offer compromises, try to make deals, we frantically look for ways to prolong the race through life.

Even if we believe in the promise of eternal life, it doesn't mean we are quite willing to give up this temporary one that has become so dear, so familiar. Even if we believe that when we die we will be with God, we aren't anxious to trade that for being with our lovers, our families, our friends, even our enemies.

So, I suppose I'll climb out of this dip I've been thrown into, make a decision, hope it's the best one, hope the cancer won't come back, hope I'll live to be really old and die in my sleep with my prettiest nightgown on. Hope. And I'll just have to remember that no matter what, I will die. Just not right now.

F.E.'s Notes:

I'm usually a doer, not a thinker. Cancer gave me the opportunity to assess my life, to assess myself and where I stood. Don't be afraid to think, to face your fears.

Write your notes here:

 

 

 

December 31, 1997

A New Year

New Year's Eve. Tonight we are going to Karen's house. There will be just a few couples there, old friends. I'll wear my wig. Karen's had cancer, five years ago, so she knows about chemo, wigs, and all that. Thank God. I feel better than I did a week ago, but I can't help but think about how I felt a year ago.

Last New Year's Eve we were at Karen's, too, and then walked over to another friend's home. It was very cold, and we huddled in our coats during the walk, only a block, our shoes crunching on the dry, frozen snow, John holding my arm to keep me from slipping in my party shoes. Heather's house, a beautiful old Georgian brick, was spectacularly decorated, and all three floors were full of laughing, celebrating people. Heather showed us a bed, a loft sort of arrangement, that she and her husband had a carpenter build for their little daughter. It was made to look like a fantastic castle, all pink and meringue, tulle and tassles. The castle door opened to reveal a playhouse, tiny and safe, with a little ladder leading up to the lofted bed amid the turrets and pinnacles.

I drank too much champagne, and wanted to leave right after the stroke of midnight. John and I drove home, and on the drive I thought about the departed year, the coming year. I was happy that we seemed to have come a long way since Jake's death. We seemed much less fragile, on the mend. Our business was going well. Cassie bought a house, taking to it like a mother bird to a nest. Morgan reported having fun at school, even struggling with a heavy load imposed on her by a dropped class the semester that Jake died. Both girls had been home for the holidays, and it had been fun.

My mother's health troubled me. She had been near death on more than one occasion in the past year, and it was a strain on us all -- Mother praying to die, us feeling guilty for praying for the same thing, having accepted that her disease, emphysema, had progressed to the point beyond plateaus.

John and I talked about what might come in the new year. We had a week-long trip planned to Wales with some old friends. We had decided to stay in Europe an extra week and treat Cassie and Morgan to a week driving through the golden landscape of the Andalusia region of Spain.

I was feeling at a point in our lives where we might be able to begin to enjoy rather than grieve our prematurely empty nest, although of course Jake was still, and always would be, a strong presence there.

We have a painting hanging in our room of a young girl, with long, straight hair pulled back from her face. She is dressed in a two piece bathing suit, with a frayed bit on one of the shoulder straps. She is standing on a diving board, toes grabbing the rim of the board, arms outstretched to maintain her balance, a look of serene concentration on her face. Behind her is nothing but blue sky. That night, New Year's Eve a year ago, when I was undressing from my party clothes, I looked at the painting and felt a kinship with that girl. I felt that having gone through what I had in the last year, I had earned the right to try a dive from the high board. I felt that I had survived the worst life could throw at me and come out not only seared, but tempered, like steel.

When I crawled into bed on January 1, 1997, I looked forward to a healing year, yes, but a year of release, too, from the pain of 1996. I also regretted drinking so much champagne.

Tonight, it is not cold. It has been a mild winter with very little snow. But I am always cold. It's very cold with no hair. At Karen's we are having fun, eating our hors d'oeuvres. People still ask me if the chemo affected my appetite. I roll my eyes and pat my tummy, which is rounder than a year ago, a response to no exercise more than too much food, I think.

The past year has not been anything like the year I expected it to be. Mother died in February. My younger sister was diagnosed with cancer in March. I promised to come out to visit her and help out after we returned from Europe. But I returned from Europe only to find myself diagnosed with cancer.

Tonight we don't talk about my cancer too much, although I finally can't stand my wig and discard it. My hair, which I expected to grow back magically when chemo ended, is still gone. This leads to discussions of wigs, and a whispered confession from one of the men at the party that he wears a toupee. Of course I knew, but we have a bond now.

We left early tonight. I'm so dreadfully tired, still. The others were going off to Heather's for another New Year's Eve party, but this year without Heather's husband, who has gone off with someone else.

I crawl into bed, pull on my knitted cap, my flannel pajamas, my socks. In bed, I'm warm, my room is soothing, a warm yellow, with blue and yellow curtains and pillows and quilts and my favorite prints on the walls, a cheeriness that belies the sometimes wretched hours I have spent there since this whole cancer thing began.

I think about the fairy princess bed at Heather's house. I wonder if her little girl feels as betrayed and bereft tonight as I have as she crawls into her little bed, her little haven, as false as a Hollywood movie set.

 

 

 

 

 

 

January 10, 1998

Gambling

Right now I am pondering my choices, once again. It seems that cancer is only one more question that I must answer. I'm reminded of taking a test in high school, and that panicky feeling of not knowing an answer, or choosing an answer on multiple choice and wondering if that was the right answer. The difference, of course, is that back then, the answer to one question on one test meant very little in the scheme of things. My answers to cancer treatment questions I think mean a great deal.

My father died of cancer, which started out in his prostate gland. He chose to have only radiation, not surgery, because there was a good chance that surgery would have meant impotence. He died from cancer seven years later, at the age of 74. He said he'd lived long enough. But I haven't.

I have reached a point where I have two clear paths. I can still have a mastectomy, and the chances of recurrence in that breast are gone with the tissue, which the doctor says seems to like to "throw tumors". And what was the percent of chance of cancer recurring somewhere else? That's the trouble, though. When I was talking to the doctor about this new crossroads, so many thoughts were racing around in my mind that I took away very little in terms of real numbers. I wish I had taken John. I don't learn very well unless I can read something and digest it slowly.

Back at the beginning, when my cancer was first diagnosed, my choice seemed clear. I had a lumpectomy. Then there was some evidence that there might be more cancer, although none had shown up in my lymph nodes. After the second surgery, I was under the impression that they had gotten it all as we laymen say. I was feeling good and told everyone who asked that my prognosis was excellent, that the rest of the therapy would be inconvenient, yes, but that my chances for being free of cancer and living a long life were excellent. I went on to chemotherapy.

Chemotherapy was more than inconvenient. It was very hard. Up until then, I was a healthy person, except for arthritis. Having chemotherapy made me sick for three months, a long time. I couldn't understand how people could go through it any longer. I couldn't understand how people could live with chronic illnesses. It was easy to become depressed, but I had the knowledge that the pain and discomfort of chemotherapy was finite. My hair would grow back, my nausea would go away, my mouth sores would heal, my skin would be pink once again. All that gave me hope.

Then came the first appointment after chemotherapy was done, and I was presented with another choice. Because I had a breast cancer tumor that didn't show up on a mammogram, because I had lots of tiny cancerous cells in my breast ducts, and because the second surgery revealed another cancerous tumor, my chances for a simple 1-2-3-cured scenario were much less than I had thought.

So I opened this new drawer filled with more information, information that affects my life expectancy as well as my lifestyle. I either had not been told, or not heard if I were told, that after radiation, my skin will have changed in its construction, and my choices for breast reconstruction are more limited. Should I choose mastectomy, and reconstruction, I would have to have an operation that would transplant tissue from my stomach or back, major surgery. And, of course with any reconstruction, the nipple would be gone and although one could be made out of tissue from other parts of my body, and tattooing would make it look pretty good, it would not be the same as having my real breast, my real nipple.

I am very depressed. There are too many decisions to make with too little real information to guide me. I took every book on breast cancer out of the library, and read and read. The choices are few. Women interviewed for these books after choosing one or another option always seem happy. But I am shocked at how many women express feeling fine about losing a breast, as though it was just an extra piece of skin they could take or leave. I don't feel that way at all. I want to be whole. I want to be the old me, have my old body back, no matter how much I complained about it. Is being alive worth giving up so much to these women? Is it to me?

I am looking for someone to make my decision for me, but no one will. John says he loves me no matter what. Whatever will give me the longest life expectancy is what he wants to choose. I wish my feelings were as clear cut to me as are his.

Finally, I decide to take a chance on radiation, and save the breast. I am betting that if there is a recurrence, I will catch it in time and then have a mastectomy. I hate gambling.

F.E.'s Notes:

Take someone with you! Talk about your options with those you love. But in the end, it will be your decision. Don't forget to ask questions.

Write your notes here:

January 11, 1998

In comes the doctor, in comes the nurse

The next time your kids say, "I don't know why I have to take geometry, I'll never use it in real life," here's another reason you can give them for paying attention in class. I went last week for my first appointment with the radiologists at Gundersen Clinic. There were a lot of people there waiting for radiation, and they were all chatting away merrily about bowling or shopping or other things people chat about besides their health. When my name was called, I was taken to a dressing room, where I was told to undress and put on a gown, "Open in the front." I've noticed that nurses never say, "Tied in the front" about those awful hospital gowns. As anyone who has ever worn one knows, the ties are simply window dressing. They don't tie in any strategic places, and as soon as you tie them, you have to untie them again.

Next, I was taken into an x-ray room, in the middle of which is a long, flat, narrow, hard table with a big thing that looks like a giant Polaroid hanging above it. The technician introduced herself and had me lie down on the table on my back. Under my head was a little square piece of foam, and on either side was another triangular piece of foam to keep my head from rolling off the table, I guess. Next, she put a larger triangular pillow under my knees, "To make you more comfortable." Then we opened the gown to "Slip your arm out," and I was told to put my arms above my head and grasp a bar above my head, palms up. A couple more triangular pillows were put under my upper arms, so I could rest them there.

When I was a first grader at St. Stephen's School, we jumped rope every day that it didn't snow or rain. I remember one of the chants we jumped to went something like "Here comes the doctor, Here comes the nurse, Here comes the lady with the big white purse." I never knew what that little chant meant back then. But then in came the doctor, in came the nurse, and in came a lady carrying something that looked suspiciously like a big white purse.

It isn't easy to be a gracious hostess when you're naked. "This is our student nurse, Mellody (I think). You don't mind if she watches, do you, Mrs. Edstrom?"

"Oh, heavens no! Mellody, please make yourself at home. Would you like some tea? A scone with clotted cream? Please, help yourself. As you can see, I'm a tad incapacitated here naked on the table with my arms above my head." Following the doctor is a resident doctor from Milwaukee or Madison or some such place. "Oh, wonderful, more company! Don't you just love big parties? Please, doctors, make yourselves at home. Don't mind my exposed chest."

 

The lady with the big purse turns out to be all business, no chatting. She is the dosemetrist (this is what it sounds like to me). She explains that she is going to take some measurements, do a contour and figure out the dose of radiation I will get. She and the x-ray technician push me a little here, a little there until I am lined up perfectly. They draw Xs on my sides. Then the lady with the big white purse rolls a device over me that looks like a flip chart with only one chart, or a drawing board that stands upright. As she traces the contour of my chest with a metal pen, an attached instrument draws the same contour on the piece of paper -- like a sophisticated Etch-a-Sketch. Then she retires to "do a little geometry and work the calculator," so they'll know how much and at what angle to send the radiation.

I am still maintaining my position, even as the party is breaking up. I find myself hoping this dosemetrist was at the top of her class in geometry and doesn't have to write the formula for the angle of the hypotenuse on her arm every morning before she comes to work. The party stragglers have run out of small talk, and I close my eyes and try to relax, as my muscles are beginning to atrophy. Then, hey! It's a party again. Everybody's back, and this time they are all gathered around me and the doctors, nurses and technicians write all over my chest. By now I have definitely decided against that tattoo that has John+Fran inside a heart.

Finally they all seem satisfied and leave all smiles. I just love it when you know you've thrown a successful party.

The nurse puts a little transparent tape over my chest drawings. I am allowed to assume a seated position and cover my chest. Then I get dressed again, have my picture taken, so they don't give me someone else's radiation, I guess, and I wave goodbye. Monday, I start six weeks of radiation, five days a week. I should have asked the lady with the big white purse for her university transcript or at least demanded that she show her math.

F.E.'s Notes:

I was lucky to have had gentle, caring health care professionals. With the exception of one lab technician who was rough when she took blood samples, I had no complaints. I almost didn't complain about that one lab technician, but one day when I was back for a check-up, I looked around the waiting room at the sick, sick people there, many much more sick than I had been, and I thought, "It's not fair for her to be so rough on these people who are already in pain, and they don't have the energy to complain for themselves." If you aren't being treated well, report it.

Write your notes here:

January 18, 1998

The tedium of radiation

Last Wednesday I drove to La Crosse for my radiation treatment, listening to radio reports that we were having light snow. For light snow, it did a pretty good job of limiting traffic to one lane, and it swirled across the road, like gauze skirts on a whirling ballerina. Just the week before, I had counted over a dozen bald eagles soaring above Twin Bluffs, enjoying the open water on the Mississippi. But Wednesday, the ice had formed after weekend subzero temperatures swept in, and I saw no eagles up in the low clouds that snowed down on me.

I've been spoiled by living in Winona. Some days I can almost do without a car. The daily trips to LaCrosse already seem to me a waste of time. What should I do during those forty minutes down and forty minutes back?

As the road cuts in and out around the bluffs, radio stations come and go. I could listen to CDs, but music will sometimes send my mind on long trips, on winding rambles, and I am often surprised that my thoughts have brought me to a place I don't want to be. How is it that I can look at the bluffs lining the river, fading off into the horizon, and some winter days they are marvels of geometric design, and other days they are bristled monsters with deep, craggy foreheads, crouched to pounce, and moving infinitesimally inward, to force me into the river?

In the waiting room in the radiology department, there is always a coffee party going on. The hospital supplies the coffee, both regular and decaf. And I guess that radiation patients bring goodies to share. One day it was a basket of craisins, dried cranberries. Today it was chocolate chip cookies and cake with peanut butter frosting. Some people sit quietly and wait their turns. Some are in wheelchairs, some are on gurneys. Others treat the wait as an occasion to meet their fellow radiatees, and some are downright chatty.

I feel like the new kid on the block, having only been there a week. Should I help myself to some food, I wonder. Then the receptionist came around from behind the desk and took a bag of craisins. Figuring it must be okay, so did I. My appointment came up so quickly, though, that I ended up stuffing the opened bag into my coat pocket and forgetting about it until I pulled my gloves out of my pockets and spewed little red wrinkly things all over the floor.

I look around in the radiology/oncology waiting room and am ashamed at the complaining I do, the impatience I have with the drive, the wait. My prognosis is good. Others talk about theirs, which are worse. The really bad ones don't usually have the strength to waste talking percentages of chances. They need all their strength to just breathe, to just move an arm, a foot. One day there is a little hospital crib outside of one of the radiation rooms. I start to bawl. I can't help it.

I leave the treatment feeling fine, just the way I felt when I went in. I know there are others who are in pain. The ride home goes quickly, as I think about what I have seen, what I have heard, what I have learned during this cancer cruise I've taken. I feel the hair on my head, which is starting to grow, and finally is showing some color. I anticipate going right to work, living a normal life. I hope I can keep these mental videos in my head for a long time, but I've been told that soon I'll forget and become so immersed in my day-to-day regular old life that the lessons that seem so important now will fade.

I don't know whether to look forward to that or not.

F.E.'s Notes:

It's nice to have company on the trip to the radiation treatments. How many people have said, "Call me if you need help. I can drive if you need a ride."? Now's the time to call and take them up on the offer.

January 25, 1998

The patron saint of radiation

I was in La Crosse for my radiation treatment two days before Superbowl XXXII, when the Green Bay Packers were set to take on the Denver Broncos.

At the clinic, there were people in green and gold Green Bay Packers colors everywhere. Every little kid had a Packers jacket or stocking cap or mittens. Ladies my age were sporting Packers baseball caps, and the men -- well, they could travel with the team and not look out of place. Down in the basement, where the Radiology/Oncology Dept. is located, four-color posters, newspaper pages, and other Packer things were taped to all the walls. You would have thought that Brett Favre were the patron saint of Radiology, and we were all the pilgrims come for the cure. The receptionist had on a Packers cap. People in wheelchairs had Packer buttons on their hospital gowns. And, there was a great big sheet cake, green and gold marble, with a green and gold frosting message exhorting the Pack to come back with the trophy.

Go, Pack!

 

February 5, 1998

When she was bad she was horrid

Radiation is almost as hard to deal with as cancer. They're both so mysterious. You can't see them, they don't cause immediate pain, but yet, there they are.

This business of two hours out of the morning of every work day is beginning to wear me down. Every morning, I leave the office at 9:00 a.m. and drive to La Crosse. I sit in the radiology waiting room for about 30 seconds, a technician comes to get me, I go into a little room, take off my top, put on a gown, go into another little room, and lie down on a table with my hands above my head. It occurred to me this week how much my posture in this process is like being crucified.

The technicians line up little marks they've made on my torso with various lights, position the x-ray machine, leave the room, a buzzer sounds and a red light goes on in the ceiling. When the buzzing stops and the red light is green again, the radiation is over. Then I leave the little room, go to the other little room, put my top back on and am back to the office at 11:00 a.m.

I have to take the word of these medical folks that something is actually happening and that whatever is happening is going to help me. It's kind of like having your palm read. All you see is lines and callouses, and you just trust the palm reader to know what she's doing, because you just paid her. This week I have a little indication that something is actually going on. A red rash has appeared. Any of you with fair skin that reacts badly to exposure to sunlight will know what I'm talking about. The rest of you probably think it's psychosomatic. Whatever it is, it's making me grouchier than usual, and ask anyone, that's pretty grouchy.

On the bright side, my hair is growing back nicely. It started out kind of slow and had me worried. The first batch of down that appeared was awfully light for a person who has been a redhead all her life. I thought either this whole thing has aged me so much I went gray, or that my childhood dream of becoming an overnight blond, like my best friend Dotty Murphy, had come to fruition, albeit a little late for the benefits I supposed would then accrue to me.

Of course let's not forget other body hair. My eyelashes, which have always been a disappointment -- not nearly long enough to bat at men for any effect, have begun to return, so I dug out the mascara. My eyebrows, too, are beginning to come back. For the last three months they have consisted of a few paltry little hairs, dots really, that I had to connect with paint on a brush to form a simulation of the real thing. They are now very strange looking things, kind of stubby and sticking out rather than slicked down. Someone described them as looking like they'd been clipped, like on men whose brows grow to hat brim size and must be pruned.

I shouldn't complain. At least there's something to expand my morning routine, which for several months has consisted of no more than swiping a washcloth over my entire head just to make sure it wasn't gathering dust during the night. Today as I was applying a little makeup to my newly lashed and browed eyes, I noticed that one hair on my left temple has grown to a length that allowed it to nearly touch my left ear.

I have also discovered why I have always had such trouble with bangs. I have a curly cowlick right smack in front -- which may also explain my disposition. I imagine I was like the little girl in the nursery rhyme "who had a little curl right in the middle of her forehead. When she was good she was very, very good, and when she was bad, she was horrid!" Right now, with spindly little hairs popping up all over the place, a rash on my chest that is beginning to itch, a two-hour chunk out of every work day, and lines on my shoes from the slush in the streets and a failed new recipe for supper last night, and having lost one of my favorite pair of socks, I'd say I'm pretty horrid.
F.E.'s Notes:
Don't forget to laugh.

February 8, 1998

Cancer, friendship, life and death

Acey McConnon Hale died last week. In our family, Acey McConnon Hale is part of our oral history. Acey was my mother-in-law's best friend beginning in childhood and lasting until Acey's death. Acey plays a part in favorite stories of Jo's childhood -- school, games, holidays, summers, mothers, fathers, siblings. Jo's steadfastness as Acey's friend has taught my children a wonderful lesson about friendship and the richness it brings to an individual's life.

Last week, I got a telephone call from a friend of mine, whom I hadn't seen since college, Elaine Wicks. A Franciscan sister, she lives in Memphis, Tennessee, where she has formed a non-profit corporation whose purpose is to help a community of descendants of slaves who still live in abject poverty in the rural area near Memphis. We met for lunch in Rochester and caught up briefly on each other's life. We laughed about the old days and remarked on how differently we view what happened then from our present perspective.

The reason for her visit to Rochester was a serious recurrence of cancer, which she first had in her early thirties. There is a history of breast cancer in her family, from her father's side, and two of her sisters also had breast cancer at a very early age. Reubs, as I used to call her in school, thought that her cancer was well under control until a routine exam uncovered that her cancer had returned. By that time, she had stage four ovarian cancer. When we got together, she had had eleven chemotherapy treatments, five more than the six they originally had told her would be required, and the tumors did not seem to be reacting. But she was still fighting, not willing to give up yet.

At lunch we talked about cancer, about facing death, about how we didn't want to die. Our chances for a long cancer-free life are the flip sides of the same coin. Mine are great, hers are grim. I asked how this new cancer and the fact that it didn't seem to be responding to treatment was affecting her spiritual life. "It's rough," she said, looking me in the eye.

Since lunch with Reubs, and now with Acey Hale's death, I've been pondering life and friendship. How is it that the same things that feed our lives deplete our lives? How is it that only the things and people who bring us joy can bring us true sorrow? How is it that even in death we live? Do we inhabit life, or does life inhabit us? Does life let go of us, or do we let go of life?

F.E.'s Notes:

Call an old friend today.

When I asked Reubs what advice she would give to women who had just found out they had breast cancer, she said, "Tell them they have to be aggressive and demanding. Tell them not to accept any treatment but the best.

Write your notes here:

 

 

 

 

 

 

 

 

 

 

 

February 11, 1998

My support group

On Sunday afternoon, as I sat trying to work up the will to clean closets, the phone rang. It was a woman who had just read my column and thought I might need someone to talk to. I guess that my columns about cancer, sickness and death are likely to give readers the idea that I am in the depths of depression. Although I have occasional periods of feeling down, I write about these things because I haven't experienced them before and I find them interesting and challenging. I write about them to help me work out the puzzle of life and death in my own mind, and to see what other people think about them.

I have an advantage, of course, because I have a public forum in which to cast my thoughts on the conundrums facing me. As I told my oncologist, through my column I have found my support group. Hardly a day goes by that I don't get a note, more rarely a phone call, from someone who has read a little bit of her or his own life in my column. Some people just send a note saying they hope things are getting better. Some write to persuade me of the power of prayer. Some send clippings about new cancer treatments or news about old treatments. Others have a story to tell, about themselves, or friends or relatives, who have gone through what I have gone through. And some just want to cheer me up. I even got a new easy recipe this week! See? It's my support group.

At first I hated stories that ended with the death of the friend or relative. I'd wonder why people were telling me these stories. I only wanted to be told about successful treatments, about cures, cases where the patient lived long and well. Gradually, I realized it is really the same story, whether the person lives or dies -- the same story with a different ending, an ending that none of us escapes finally. The further I am from surgery and chemotherapy, the more I forget that cancer can be fatal. Instead of thinking that every pinch or pull or twitch is going to kill me, my mind is occupied with other thoughts, the mundane problems of life on planet earth.

Back in October, when I was bald from chemotherapy, I got a note from a reader whom I knew, a good friend of a friend of mine. She also was going through chemotherapy and commiserated about the bad luck of being bald in cold weather, remarked on how women feel a need to cover the nakedness of chemo-baldness, not just for comfort, but because we aren't used to seeing ourselves or other women without hair. "If more of us are brave about going sans chapeau," she wrote, maybe there would be fewer stares. And, she made some lighthearted remarks about ears seeming so much bigger when not half-hidden by hair.

I loved the note for its spirit of acceptance in the face of adversity and kept it, meaning to get together with her when I started to feel better. On Sunday, I learned that Sandy Christensen had died, at only 58.

Death always makes us cry, "No, no! Wait! Wait, I wanted more. I wasn't done with that person. It isn't time for life to end." When the person who has died is close to us, is someone we love, we have trouble being thankful for having had that person, because that requires that we accept a finality to death. When that person touched us and our lives in a casual way, because random events put us on overlapping orbits, we can be thankful for having had that little cosmic bump in life that enabled us to see into that other soul.

I am thankful to have had Sandy Christensen and her strong spirit in my support group. And I'm thankful to all the other members of this group for the strength they give my spirit.

F.E.'s Notes:

Don't forget to pass on what you have learned to others you hear about who have breast cancer.
February 22, 1998

The lesson of the rusty van

We have an old delivery van that is perhaps the most dilapidated such vehicle in town, or even this whole end of the state. Over the years it has had many different drivers, some more careful than others. The body is so dented and rusted that it seems impossible that it can hold together. The engine, however, keeps going and going and going. We expect one night to get a call from the van driver as he delivers papers to the carriers, saying that when he returned to the van after dropping off some bundles the entire vehicle had disintegrated, leaving a neat pile of newspapers at the curb. Kind of a Cinderella's coach story.

One day a while back, John and I pulled into the alley behind the office, and here was that van, complete with press rags stuck in some of the larger rust holes either to keep the draft out or the empty pop cans in, we think. John paused and looked at the van, and said, "I've really learned a lesson from that old van."

I expected him to say he had learned to buy used, or not to buy used, to have the van washed weekly to prevent rust, or something of that nature. He surprised me. He said, "Never paint your name on the side of a delivery van."

I thought about that last Sunday. I woke up in a funk. It was gray outside, the snow was fast melting, my skin was burned from radiation. Nothing was right with the world, and it didn't seem that there would be any relief soon. John was trying to cheer me up, and when I suggested taking the dog for a walk, he readily agreed. We put the leash on the dog and started off. We hadn't even gotten beyond our property line when the dog, whose leash I was holding, decided not to heel and instead walked in front of me.

I tripped over the dog. The dog, attached to my wrist, leapt forward to get out from under my boots, and tipped me right over onto the sidewalk, nose first. I heard a horrible crunch, and when John bent down to help me up I asked him if my nose were broken. He didn't know, but I had been cut right on the bridge of my nose by my sunglasses, and blood dripped into the little snow that was left. John took the dog back to her kennel, and I wandered into the house to assess the damage, crying.

When I cry it always confuses John. "Does it hurt a lot?" he asked. I managed to respond between sobs, "No."

"Well, then," he struggled to understand, "what's wrong?"

Well, what was wrong was that falling over the dog, wrecking my favorite sunglasses, not getting to go on my walk, and the prospect of having a big scab on my nose was just one too many things to feel sorry for myself about. It just seemed that my body was conspiring against me at every turn. Instead of being a vehicle for my spirit, it was bent on destroying my spirit. Instead of being my servant, it was my master. All my past quarrels with my body were magnified in my mind: fat thighs, sagging skin, arthritic joints, skin that sunburns instead of tanning, gray hairs, thickening waist. I even dredged up past childhood grievances about red hair and freckles.

John took me to the emergency room when the cut on my nose didn't want to stop bleeding, and he thought I might need a stitch. That made me feel even sorrier for myself. I didn't need a stitch, but the doctor looked at it, and the nurse put little strips of tape over it to hold it together. Now, everywhere I go, I have to answer the question "What happened to your nose." The truth is so stupid sounding that I've toyed with the idea of "Snowboarding accident" or "Rock climbing" or "Bar fight," but I always end up telling the truth: "Walking the dog."

Looking at myself in the mirror every morning and seeing a middle-aged woman with hair a quarter of an inch long, stubbly eyebrows, new wrinkles, an absurd sunburn on half of my chest, and now a big bandaid across the bridge of my nose, has taught me the same lesson the delivery van taught John. Don't define yourself by a cosmetic exterior. It won't last as long as what's inside.

 

 

March 1, 1998

The slow burn

Radiation, besides being like going to prison and never having a free day to myself, is hard in its own way. It's not as bad as chemotherapy. The radiologist is extending my treatments for another week. I am burned. It's like a bad sunburn, but somehow of a different quality.

I had to stop wearing a regular bra almost immediately after starting radiation, and I went out and bought an all cotton, very utilitarian one instead. I had to quit wearing that one about three weeks into treatments and started wearing a cotton sports bra. I wore that for about another week and a half, but the area near the scar in my underarm, where they removed the lymph nodes, was so burned and starting to peel that I finally had to go braless. This is not easy for someone who wears a D cup. I'm still going to the office every day, and finding something to wear that will hide my condition is not easy either. I am pretty much limited to a cotton blouse with a blazer over it. If I have a hot flash, which happens a couple of times a day, I can't take off my jacket . I just sweat it out.

Hot flashes have been plaguing me since I was about half way through chemotherapy. I had to stop taking a hormone supplement, since there are those who say that perhaps hormone supplements contribute to the development of breast cancer tumors. I've been on hormones since having a partial hysterectomy nearly seven years ago. I guess I had assumed that by now my ovaries were just little dried up raisin-like things inside me, but apparently something is producing hormones and something is sending me this fire that heats me up to boiling several times a day.

Since I finished chemotherapy, I've been on Tamoxifen, an anti-hormonal drug, twice a day. I don't know what the side effects are, but I've noticed more hair on my face than I thought I had before all this started. I was without body hair for so long, though, maybe I'm not remembering how it was B. C. -- Before Cancer.

For the last week of radiation, and at least three weeks after radiation was over, I was still sore, and the skin on my breast was peeling. The skin feels very rough, too, although it is becoming a little less sensitive and painful.

I'm in my ninth month of knowing I have cancer. And to think that my old self, my young self, my self who couldn't see the end, thought that the nine months of pregnancy were long. This is horrible. Horrible and never-ending, it seems. At the end of pregnancy, I got the most wonderful reward I could imagine. What will I get at the end of this. Is there an end? Or is the end what I'm trying to forestall.

I feel so old, so undesirable, so used up. But people say to me, with some surprise in their voices, "You look so good! Your skin looks so healthy! Did you just have a facial?" Then I know how awful I must have looked going through chemotherapy, when I was so chalky, so hairless, so pinched and afraid looking. When I look at myself now, I am sad, grieving for my old self, the self with no troubles, the self who saw 50 as just half-way there, the strong self, the self-sufficient self, the tough self.

I'm hoping that Spring will help, that sunshine, longer days, warmth, will come and save me from this melancholy, this vast surround of darkness and despair.

F.E.' s Notes:

It's almost over. Ask for some cream to help with the pain. Ask for pain medication. Don't suffer in silence. Let the doctors and the nurses and technicians know how you are feeling.

 

 

March 4, 1998

Paranoia

Thursday was my last day of radiation treatments. When I got up that morning, I had a sense of freedom, of anticipation, like the day you leave on a vacation, or step on a train or plane, or open a map to a foreign land. I had felt like a prisoner to my health since my cancer was diagnosed last July, and Thursday I was to receive my pardon. My work life, my social life, my private life all took second place to my cancer and its treatments. As I completed each step, I thought that my life would be my own for at least a little while, but I underestimated the pervasiveness of this disease.

When I found out about my cancer last summer, I had been planning to go to Massachusetts for a week to help my youngest sister, who was then going through radiation. Preparations for surgery delayed that trip. Then after the first surgery, I thought I could go. No, I needed another surgery. I still held out hope, because chemotherapy wouldn't start for several weeks, but I didn't know about the lengthy preparations for chemotherapy, testing this and that. As it turned out, my sisters came to help me out during the Christmas holiday. And then radiation started. Every weekday for seven weeks, I had a radiation treatment.

So on the morning of my final day, I took care dressing, like a prisoner taking off her jail uniform and putting on civilian clothes. I wore my black suit with a favorite pin. I wore the butter-colored blouse my sister gave me for Christmas. When I went out to get in the car, I squinted in the light of day, like Jimmy Cagney walking out of Sing Sing to start a new life. I stopped at the bakery and bought a couple dozen doughnuts for my friends (by this time they seemed like lifelong friends) at the Radiation Oncology department at Gundersen Clinic. I swept in to the basement waiting room with my huge box of doughnuts, announcing in a loud voice that this was my last day of treatments. When they called my name to go into the radiation room, I flew. I jumped up on the table and bared my breast. One of the technicians, Rosa, asked if I would miss them. I hadn't thought about it until that moment, but I had to answer yes, I would miss them--I would and I wouldn't. They are (as are all the people there I have dealt with going through this cancer) amazingly upbeat, friendly, competent, and reassuring.

I went to work, where I found a nice card, some candy and flowers. I made myself almost sick on the candy. That night John and I had dinner with his mom and sister, a celebration. The next morning, I slept late, indulging myself. As I went through the day, I realized that I was feeling tentative, half there. Over the weekend, I wondered why I didn't feel happier. Where was that feeling of euphoria that had swept over me on the last day of radiation?

This morning, I think I have figured it out. I'm going through withdrawal. During the treatments, I had my surgeon, my oncologist Dr. Sorscher, all the staff in the labs, at the reservation desks, in the Chemotherapy department, my radiation oncologist, Dr. Doescher, the friendly people there. They were focused on me, on curing me, on treating me. They were interested in my every physical and emotional reaction to this cancer and the treatment. They were my opiate. With them around, I didn't need to worry. They worried for me.

Now here I am, like an addict facing the fact that her conduit has dried up. There's no more warm cocoon of medical personnel to surround me. Now every twinge, every spot, every lump is my responsibility to inspect, to seek out. Oh, I'm scheduled for follow-up appointments, of course, but I'm not the debutante any more. I'm last year's model. I'm afraid they'll forget my name.

My friend Jane Rohrer, who died from ovarian cancer several years ago, wrote a paper probably midway through her treatments about her cancer, which she called "Paranoia is a normal state of mind" (when you have cancer). Now I understand it.

 

F.E.'s Notes:

This, too shall pass. It may seem now that cancer is all consuming, all that you can think about. It may seem that you will never shake this fear. But it goes away. Talk about it in your support group.

Ask your doctor if you will be considered cured if you are free of cancer for five years. Ask when the five years starts.

Write your notes here:

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

March 15, 1998

Bad hair day, finally

I was so excited when my hair started to come in after chemotherapy. First there were little white downy hairs, but colorless, like cellophane noodles, then real-looking hairs with real-looking color. They even caught the light when I moved my head. I didn't have to wear a hat. I didn't have to wear a wig. I still got a lot of strange looks. After all, how many women do you know who have hair a quarter of an inch long, and who don't have a pierced eyebrow or steel-toed motorcycle boots?

Well, in the last week or so, as it approached the half-inch mark, my daughter has suddenly begun to fiddle with my hair. First she pulls it this way, then that way. She says things like, "I think your hair is getting too long" and "You might have to start combing your hair." Talk about role reversal!

All this talk about my hair has got me looking at it in the mirror, something I haven't had to do for months. I had to dig around for my hair brush. I first brushed it this way. It stood up in little tufts. So, I brushed it that way. It stood up in little tufts again. I parted it. I unparted it. No matter what, it stood up in little tufts. So, this is easy, I thought. I'll just brush it down flat. I brushed it all forward. I looked like Pee Wee Herman (before he got into such trouble!) I brushed it all back. I looked like Eddie from the Munsters TV show. As long as I was looking at my hair, I gave my new eyebrows a gander. Now that I have some, they look too big, too bushy, too dark. They look like caterpillars playing follow the leader. What am I going to do?

I noticed I have nose hairs (yuk!) and little hairs all over my body. Did I always have all these hairs, and just didn't notice them? Or have all those chemicals turned me into a werewolf! Oh, no! I Was a Middle-aged Werewolf. Can you see it? Who do you suppose would play me in the movie? I'd choose Cher, but it would probably be Kathy Bates. Do you realize that there are little hairs on your fingers and your toes? How long are a woman's sideburns supposed to get? What am I going to do with all this hair? Women don't get hairy backs, do they? This whole hair thing is most distressing.

I had forgotten about bad hair days. I just wanted a hair day. I had forgotten about getting up in the morning and having one side of my hair flat as a pancake and the other side doing the static electricity thing. I had forgotten about having a low forehead. I had forgotten about getting in the shower, and discovering only after my hair is all wet that the shampoo bottle is empty. I had forgotten about reaching for the razor and finding out it has been appropriated by a certain someone who believes "what's yours is mine." I had forgotten how thick my hair is. It looks like $50 a yard carpeting.

Is this supposed to make my life exciting? Is all this constant change designed to keep me on my toes? When am I going to be able to get down to business and not get a jolt every time I look at myself in the mirror or run my fingers through my hair? When am I going to have a GOOD hair day?

I could always wear a hat.

F.E.'s notes:

Pretty soon you'll have lots of great hair again and things will be back to normal.

 

 

 

 

 

 

In the hot seat

June, 1998

It has been so warm and humid lately, I have this crazy feeling I should be pregnant. What is it about heat, humidity and the female reproductive system?

Each of my kids was born in either May or June. "Oh, you're so lucky," my friends would say, "you won't have to go through the long, hot summer." Well, even back in those days before El Niño, it seemed to me that there were strange winds blowing hotter than usual air over Winona, Minnesota each time I was with child.

It was so hot all I wanted to do was sit in the kiddie pool and float there like a Beluga whale, watching my belly shift as the baby moved around in her little private swimming pool, too. I'm usually a real hot weather lover, but those days of carrying around extra weight (and not just in front, either!) and breaking into a sweat just getting out of bed made me yearn for cooler days.
Even when I had Morgan, who was born on May Day, I had to quick put together some summer maternity clothes, because I was unprepared for it to be so hot in April!

Well, I can't expect to be expecting these days, but due to the after-effects of chemotherapy for my breast cancer, and the tamoxifen, my reproductive system is once again teaming up with Mother Nature to cause me nothing but trouble.
Here I am, the girl who sleeps year 'round with a blanket over her, tossing and turning and kicking all the covers off even when the nights are a pleasant 60 degrees and the fan is blowing cool air into the room. And the minute the hot flash passes, I'm fumbling for the blankets again.

If a lot of other people weren't remarking on the hot weather that has come our way, I'd think it was just a prolonged hot flash. I'm actually glad in a way that summer is coming, so my rosy cheeks will look like a sunburn, and my moist brow can be explained away.

As it is, I wait for others to say it's time to turn the air conditioning on before I speak up. I get enough strange looks without inviting them.

John has been bringing home various vehicles to test drive, as it's time to turn his Jimmy in. Last weekend, he brought a car home and invited me to help him test it out. I climbed in, and as we wheeled along Huff Street, I felt a hot flash coming on. But this one just didn't want to go away. I opened the window. No relief. I asked John to open his window. No relief. I turned on the air conditioning. I was still sweating and panting.

I asked John to feel the back of my seat. It was scorching! Wait a minute, I thought, I wonder if this thing has heated seats. Sure enough, when I read the handy manual in the glove compartment, there it was, a little switch on the side of the seat. And, it was turned on. This is a option that I could do without. I have a built-in hot seat of my own.
In order to reassure John that the rest of his life won't be devoted to jumping to my commands ("Open the window! Close the window! Turn on the air! Turn off the air! You're sitting too close! You never want to cuddle any more!) I told him they say this passes as the body gets used to a lack of hormones.

I don't think he believes me, though, ever since Dr. Tweedy told him when I was pregnant with our first child that my temper would improve after the baby was born. Poor John. He's in the hot seat, too.

 

F.E.'s Notes:

By now, your doctor should have mentioned tamoxifen, which might give you wicked hot flashes, but may stave off any recurrence of the cancer if your tumor was hormone recpetive. If the night sweats that accompany hot flashes, which you may have even though you are not on tamoxifen, are keeping you awake at night, ask your doctor about a mild sleeping aid. I take something called Bellergal. Tamoxifen can also cause a vaginal discharge. Ask what you can do for that, too. Remember Steven Kelly"Pain is inevitable, suffering is optional."

Write your notes here:

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

To family

July 4, 1998

I can remember the days when I thought that friends were more important than family. Friends just understood me better, were more accepting, and a lot more fun. I can also remember the days when my kids thought the same thing. Sometimes they still do. When I think back over the years, I sometimes try to remember the friends who moved away, drifted away, whose family situations changed. We were so close back then, and so distant now. Some we have lost track of completely. "I'd sure like to see So-and-so again," we sometimes say to each other. A strong family never loses track of its members. A strong family is a haven and a shelter from the rest of the world.

Over the Fourth of July, during the semi-annual Edstrom family reunion (with a couple of non-Edstrom members), and on Monday, when I visited daughter Cassidy, my current convictions about the importance of family were reinforced. We Edstroms don't get together as often as we used to. Some of us go away in the winter (not me) and most of us have moved to one of the coasts -- California and Rhode Island. So when we do get together, it's fun and also a reminder of times when we were young, carefree, full of hopes and dreams, and full of the expectation that things would never change. Of course some things have changed. Our son, Jake, died, John's father died, my parents died, I had breast cancer (the first life-threatening disease in my generation), there have been divorces. For some of us, our hopes and dreams have either been fulfilled or modified to conform to reality. For others, our hopes and dreams have suffered some hard knocks, and things haven't turned out as we expected. Some of us are content, some are not. Some of us would be considered successful by anyone's measure. Some of us have defined our own success. Some of us are happy, some of us can imagine being happier.

When we are all together, we don't necessarily judge each other by our adult successes or failures, our health, our possessions, our triumphs or disappointment. No, we have twenty, or forty, fifty or sixty or more years of family together that combine to create our pictures of each other. We give each other credit not only for what we are, but what we were.

As we gathered over the weekend, there were lots of opportunities for each of us to praise our parents and our children for their accomplishments, to show each other our love. Of course there were the moments, too, when those old irritations surfaced, but quickly subsided when we could laugh about them. The weekend ended on a high note, lots of hugs and kisses, promises to keep in touch (e-mail makes it a lot easier!).

On Monday, I drove to the Twin Cities with Morgan, put her on a plane, and then went to dinner and stayed overnight with Cassidy. During the dinner conversation, she related her work day, which had been spent mainly in trying to find help for a new employee who was having a psychotic episode. In addition to having to get through all the bureaucratic red tape (who is paying for this patient? who will be responsible for this patient? how will we get this patient to accept treatment?) the entire proceedings were complicated by the fact that the new employee's immediate family lives overseas, a romantic relationship here in the States had ended recently, and the nearest relative is an aunt in California.

"Who can help?" we asked each other, and shook our heads at the impossibility of getting the employee back to family. Family. That's where we first look for help. That's why family is important, and shouldn't be allowed to be misdefined, to be devalued, to be forgotten. Even when we don't need help, we gain strength, solidity, love from family.

F.E.'s notes:

Take advantage of the lessons the last nine months have taught you. It can enrich your life.

July 14, 1998

Happy, healthy and still hoping

It's been over four months since the end of radiation,but I'm still feeling some of the effects. One day several weeks after the end of my treatments, after my breast had lost its sunburned look and pain, and I was back to wearing my real bras and could dress like a woman again, I woke up with that breast swollen and tender.

"Oh, that's normal," said the radiation oncologist, whom I called right away. "That could last a year or two."

I tried to act as though I didn't care, but I do. This isn't fair! It's supposed to be over. The surgery, then the radiation, damaged the lymphatic system, and my poor body just can't figure out how to get rid of fluid that builds up. I also have a very uncomfortable vaginal discharge that I've had for months, nearly since chemotherapy began. Apparently I picked it up when my resistance was down. The doctor also told me that tamoxifen, which they are hoping will keep cancer from coming back, can cause a vaginal discharge. There can be vaginal dryness, too. No more lovely hormones. My poor little ovaries have been fried by the chemotherapy.

Hot flashes and night sweats are still with me. Sometimes I can go a day or two without being bothered, but other days I can't tell if it's the humidity or me. I'm afraid to ask if people think the room is hot, because I always think it's probably just me. My employees had to beg to turn on the air conditioning. It wasn't me after all.

I take tamoxifen twice a day, which exacerbates the effects of menopause. The effectiveness of the drug has been proven in studies, and I am glad that it exists. I am no longer tired, dragged out. I feel good. My color is back. I've even had my hair cut. John's uncle Ev (who as a band director and then founding partner of a music publishing company is used to making demands that people follow) said, "I like your hair like that! It looks good! You should keep it that way!" I like it too. I may never grow it longer than an inch. My friend Bob said, "Now you can try all those hairdos you were afraid to cut you hair for." John would like to see me looking more like a woman, more like the old me.

I am less impatient than I used to be. I am less likely to agree to do things I don't want to do. I am more likely to seize opportunities that present themselves. I am more likely to go on a vacation and not think about work. When we left on our first trip since my breast cancer was diagnosed last July, I felt like I had been let out of prison. I never wanted the plane to land, I wanted to fly forever, be free. But I was glad to get home, too, where my life is a little like it always has been, in some ways better, some ways worse.

Only occasionally do I feel the prickle of fear of that nasty disease. Only occasionally do I wonder what is really going on inside me. Only occasionally do I let breast cancer control me as it has done for the past nine months. I'm alive, I feel great, and I want to stick around for a long time. I have much to experience before I'm willing to say good-bye: weddings, babies, grandchildren, and a chance to grow old with my husband.

 

F.E.'s Notes:

You're getting there.

Write your notes here:

Like a Tornado

July, 1998

Eleven months ago, my friend Mary Alice came to visit me. It had been over fifteen years since I had last seen her. I had just gone through surgery for breast cancer and was facing postoperative treatments. I imagined that my need for reconnection to my life was so great that the energy from that need made the earth tip, or speed up or slow down, and sent Mary Alice to see me, to remind me of the wonderful life I have had. On the Fourth of July, Mary Alice called again. At Easter time, she had a mastectomy because of breast cancer.

When she was here in August, she had no indication that she had a lump in her breast. In October, she felt a BB sized lump. She went to a doctor, who said "Let's keep an eye on it." Life got busy, as it tends to do close to the end of the year, and Mary Alice was probably not as vigilant as she should have been. The next time she thought about the lump, she noticed it seemed to have grown. By early April, when a new doctor looked at it, it had become much larger, and when the doctor took a biopsy, it showed cancer.

Mary Alice then was referred to a surgical oncologist, who, when he performed what was supposed to be a lumpectomy, found that in three tries, he couldn't get a clean margin (edges of the incision free of cancer cells), something I know all about. Mary Alice is a small person, slender and athletic, and the tumor was about two inches across. The doctor finally had to perform a mastectomy. Mary Alice is now facing the long process of breast reconstruction. She is endlessly optimistic, never willing to bow to defeat.

"I learned how to deal with this cancer from Bill Clinton," she told me. I expressed some surprise at this. "I was going through this at the same time that the Monica Lewinsky thing was hitting the news," she explained. "So, I thought, 'Look at Clinton, if he can go on as though nothing is wrong, so can I.' I just put that little black dog in his box and didn't let it out."

"In fact," she said, "it was like Christmas." Again I expressed surprise. "Each of my sisters came to spend a week with me, and my parents came to see me, too." I was beginning to think that she was in denial over this whole breast cancer thing, until she told me, "On Good Friday, after the surgery, I felt as though I was the one nailed to the cross." She has some bitterness towards the doctor who dismissed her, instead of being more aggressive in diagnosing the cause of the lump in her breast. And she wishes that she had been more aggressive in demanding to know what the lump was.

"Now I feel like the aftermath of a tornado." (She lives in Kansas, just like Dorothy in the "Wizard of Oz") Before a tornado, everything is wonderful, warm and maybe even sunny. You look around at the familiar landscape, and all is right with the world. Then all of a sudden the temperature drops, and the sunlight turns to darkness. The tornado hits, so powerful it can't be deflected by human effort. It destroys everything in its path. Afterward, the world acts as though the tornado hadn't happened. The sun shines, the breezes are warm and gentle. The familiar smells of summer soothe you. You look around, and what has been destroyed will be rebuilt; big trees are uprooted, but saplings continue to grow.

I am marveling at Mary Alice's emotional strength that allows her to deal with the devastation of breast cancer and mastectomy. Even the breast reconstruction gets a positive spin from Mary Alice. During the surgery, a flap of skin is left and the rest of the breast tissue is removed. A deflated bag is placed under the flap of skin and the pectoral muscle. Slowly, over several weeks, saline solution is injected into the bag, gradually stretching the skin. "Does it hurt?" I asked.

"It's uncomfortable, but I tell myself I just have to get through it, so I do. Besides," she goes on, "I've never been so curvy." Over several months, the saline solution and gravity finally come to an agreement, and the breast looks pretty natural. Mary Alice says the plastic surgeon told her that by Christmas time the process should be complete. Tattooing or transplanting nipple tissue from the other breast can complete the look of a natural breast. The new breast won't have the same sensation that the old one did, because so many nerves are disturbed in the whole process. Usually some augmentation will also be done on the remaining breast to even things out. When a friend suggested this to Mary Alice, she asked her plastic surgeon if she couldn't perhaps become a "B" cup. "Most of my patients want at least a "C" cup," he said. "Hey, why not?" she replied. In the meantime, Mary Alice has discovered the benefits of cotton wadding to avoid a lopsided look.

Mary Alice is single, and reports that any fears she might have had that she would not be as attractive to men have been allayed. In fact, she says, lately she seems to be attracting attention from younger and younger men. "They think I know things that they don't," she says.

The further I get from my surgery, my treatments, the harder it is to look at my tipsy-turvy breast and be thankful for it. It is even hard to remember sometimes to be thankful to be alive and not suffering. It's really easy to be at the "pity party" and mope around about the lumps (pun intended) life has sent me. After a half an hour on the phone with Mary Alice, I'm reminded of my good fortune, my treasures. I think about the tornado that went through my life, and then Mary Alice's, and think, "Nothing really important has changed, nothing has been destroyed. And the sun is out and the warmth feels good."

 

 

 

 

Epilogue

September 30, 1998

I got a postcard in the mail that said in big letters, "This is not junk mail!" It was an invitation to my high school reunion. It is traditionally held on Thanksgiving weekend, so the alumni can go to the Thanksgiving Day football game. This is a big event, and I remember when I was a kid thinking that a lot of old people came to that game. I guess I'm expected to be one of those old people this year, all bundled up in Flyer colors passing flasks back and forth and generally doing all sorts of odd and slightly distasteful old people things.

What a thought. There I'd be, sitting with the old guys who forgot to shave a big patch of whiskers on their necks, and all us old women with lipstick on our teeth and our eyeliner somewhere up near our eyebrows.

So, I had to decide if I'd be able to cook Thanksgiving dinner (my absolute favorite meal to prepare in the entire year!) in Minnesota and still get to the Framingham, Massachusetts, Eagles Hall by 7:00 p.m. on Friday. Supposing I could work my schedule to put me in Framingham the day after Thanksgiving, did I really want to go to the Eagles Hall to see a bunch of people I haven't seen in ten years? If I did go to the reunion, the card reminded me, there would be a D.J. and (this in bold type) an "all you can eat buffet."

I had a month to decide whether or not I would attend. That was good because it gave me time to think and plan. But it was bad because by then I might have forgotten all about it. As I looked over the postcard one last time, I noticed in fine print that it said "No Senior Citizens Discount." Another consideration.

In the end, I decided to go to the reunion. I worried about it, though. I wondered
if my friends would be able to understand what I had been through. Everyone at home knows I had cancer, because I wrote about my experience in my newspaper column. I get calls frequently from women who have just discovered a lump, or that the lump is indeed breast cancer. Talking with these women is easy. We have a bond, even though often we have not even met each other. We gather strength from each other. But this reunion trip would be different. Would I tell people about my breast cancer? How would I say it? Would my short hair be a give-away?

I got to the Eagles Hall, and after a few uncomfortable moments upon discovering that all those newspaper clippings on the bulletin board were obituaries, I actually had a good time. People remarked on my hair, and I'd say, "It's pretty short!" But
when one classmate, Paula, mentioned my hair, I gave in to the impulse to tell her that I had gone through chemotherapy for breast cancer.

"You, too?" she asked. We shared our breast cancer experiences then. She found out about her breast cancer just after her husband left her for another woman, and she was alone. But, she said, her kids were great, her sister very supportive. She had a mastectomy and reconstruction, along with chemotherapy. Instead of wallowing in self-pity, Paula reassessed her life -- life with no husband and with only one breast. She sold her house in the suburbs and bought a place on Cape Cod. She stays with her sister during the week while she teaches school, and spends weekends and vacations on the Cape.

At the end of the evening we parted, hugging to acknowledge our common
bond, and wished each other good health. "Thank God, I'm not alone," I thought
for the thousandth time since I discovered the lump.

F.E.'s Notes:

You may have to open the door and stick your head outside, to be sure, but there is company out there. Your doctors, all the other health care workers, your support group, the American Cancer Society, your friends, your family, your co-workers. And you'll be surprised who will next say to you, "You, too?"


Top Stories Area News Features Births Obituaries Police Blotter Area Sports Vikings View Packer Partisan Outdoor Letters to the Editor Editorial Postscript Club Calendar Campus Notes School News Postmark At the Movies Photo Scrapbook Growing Concerns Investing Right Employment For Sale Real Estate Services Garage Sales Want To Buy-Rent Pets-Animals Business Opportunity Boats Motorcycles Automobiles-etc. Auctions Farms Miscellaneous Archives Who We Are Circulation Data Classified Rates