Gallows Humor

Five days following surgery for breast cancer I was finally able to remove the last of the bandages. I’m convinced the hospital uses super glue to make them stick. Likewise, I was able to scrub the word “yes” from my shoulder. The word was printed there, with purple ink, to indicate the correct body part to be operated upon. I should have left it there. I have to go back for more surgery November 2, 2009.

The reason for the second operation is good. The top edge of the margin, where the tumor was, is only one millimeter. It should be at least two. The surgeon wants to take out more tissue to guard against recurrence of the cancer. I’m calling it my one millimeter operation.

Following this past Monday’s surgery I was a colorful mess: Orange from the antibacterial scrub. The purple word “yes” written on my arm. White bandages. Green, red, and purple bruises around the area of the incisions. I will not miss being a rainbow.

I’m already thinking of the radiation treatment, which I will likely have to undergo in the next few weeks. It is said to shrink the breast by one bra size. Where does one shop for a bra with mismatched halves?

Now for the cliché parade I’ve been seeing in the past few weeks: Hang in there. Keep on keeping on. That which does not kill you makes you stronger. Better safe than sorry. You’re doing great. You’ll be fine. Think positive. Relax.

A sharp-eyed friend noticed I posted a blog this morning, which I’ve taken down. Too serious. I’m more fortunate than so many who have more advanced stages of cancer, and I know it.

I’ve finished up reading The Guernsey Literary and Potato Peel Pie Society. What a delightful book! I’m so glad I picked it up the day before my surgery. It saw me through and then some. Of course, the subject matter, the occupation of the Channel Islands by the Germans during World War II, immediately captured my interest. My own novel, The Still Voice, takes place in Germany during the war.

I laughed out loud when I came to this line from the central character’s publisher in the Guernsey story: “Strings of anecdotes don’t make a book.” The first draft of my manuscript was a string of anecdotes culled from relatives about their wartime experiences. A book they did not make. Several drafts later I had San Francisco author Adair Lara critique the manuscript. She sent me an email, effusive with praise and including several pages of suggested changes--some of which I even took! She did write: “You have two books in one. You must change the ending.”

I’ve changed the ending. But I do still love the original, as it winds up with the romance that flourished between two people who became my parents.

There is one anecdote from the original ending that is dear to me. When my parents met in Wiesbaden in 1947, my father owned a huge shepherd dog said to have been a member of Erwin Rommel’s Canine Corps. My father would tuck love notes to my mother into Ivan’s collar. The dog would walk them from my father’s office to Mother’s home. One day, a friend of my father’s saw Ivan board a bus. Apparently, the dog had previously ridden the bus with his master and figured out a quicker way to deliver his notes! When the driver told Ivan, “Not you. People only,” Ivan bounded to the rear of the bus and climbed aboard. A smart but lazy character, that was Ivan.

If I ever get to write a second book, I hope I can include the romance that flourished in the rubble of WWII--and, of course, Ivan.

My favorite aunt, Maria, is ninety-four and lives in Bavaria. As I reside in Northern California, the distance between us is great. I miss her terribly.

I love the image I have of her in my mind. She’s sitting at the dinner table, eyeglasses dangling from one hand, the other hand wiping tears of laughter from her eyes. So often full of silliness, my aunt Maria loves to laugh.

I’ve managed to keep her near me by patterning a character in my novel, The Still Voice, after her. Like my aunt in her younger days, the character is a member of the Wiesbaden Swim Team. She’s adventuresome and pretty fearless.

Maria survived World War II living in a small town about an hour northeast of Wiesbaden. A story she loves to tell happened after the war was over. Her husband, imprisoned in a POW camp, had escaped and hitchhiked home from the Russian Front. He had her open a surprise he carried with him--a tin of bacon he’d managed to pick up along the way. She worked the metal key around the edge of the tin. When it sprang open, the bacon was full of maggots. What did she do? She squeezed the maggots out into the kitchen sink and fried up the bacon. The grease, she said, would make good oil for cooking!

Desperate as those times were, my aunt never lost her sunny outlook. One of her favorite sayings is, “Every day is a gift from God.” As a fifty-year breast cancer survivor, she has every right to say that.

This morning her son and my favorite cousin, Dieter, called to see how I was doing after my breast cancer surgery. I had to admit it’s a cranky day. The incisions burn a bit. My throat is sore from having had a breathing tube stuck down it. I feel weak. As I complained, I had to remember this operation saved my life. From now on, every day is a gift from God.

Three little elves left flowers and cards on my doorstep last night. My heartfelt thanks to them, and I wish I could join them at our book club meeting tonight. The spirit is more than eager. The body is feeling puny.

I’ve come through Monday’s surgery pretty well. I’m now a one-day breast cancer survivor. It’s a sisterhood I never aspired to join. Since my diagnosis, I’ve discovered we are legion. From the admitting nurse who checked me in to the nurses who cared for me, many had stories of their own to share. They held my hand and calmed my fears. I owe them a great debt of thanks.

There was good news yesterday, too. The HER2 test result, which indicates the aggressiveness of the cancer, was negative. That news, moments before surgery, gave me great relief. There was even greater relief afterward. The surgeon told me my lymph nodes were clear. It will be a few days before the final pathology report. But things are looking up.

A great big hug to my family who has been there for me and came to me right away in the recovery room. More hugs to surgeon Marla Anderson and her wonderful crew. And smiles all around to my book club friends. I think they’d be happy to know I spent the preoperative part of yesterday reading The Guernsey Literary and Potato Peel Pie Society. It’s a marvelous book given me by a friend in my writers group.

As writers doing our solitary work, we tend to feel all alone. I know now I need never feel that way again. For today it’s back to some rest, that cup of coffee denied me before surgery, and my book. I can hardly wait to read more!

What the human being can adjust to is amazing. Two weeks ago I was devastated at being diagnosed with breast cancer. Now I’m ready for my surgery. The tumor has to come out so the healing and the treatment can begin.

That doesn’t mean I’m not angry at having to go through it. Because I am. It doesn’t mean I’m not scared stiff. Because I’m that, too.

I’m looking at a rock sitting next to my computer. It’s painted with a pink ribbon and the word “courage.” I chose this rock among several on the breast care coordinator’s desk when I was at the hospital. It spoke to me as courage is the theme of my novel, The Still Voice. Years ago, when I began the research for my story, I was visiting a neighbor who handed me a book. “You’ll find this interesting,” she said, “as you’re questioning how the very young can be so daring as to stand up to their government.”

The book was called Conscience and Courage: The Rescuers of the Jews during the Holocaust. Its author is Eva Fogelman. There were a number of articles that interested me in that book. One in particular noted that, in rare instances, a young person has a keenly developed sense of justice. More likely, the youngster has an older role model in a parent or sibling. My character Sophia’s role model is her much older brother Max. The bond between the two is one I love because it is drawn from my mother’s relationship to her brother, who was twenty years her senior.

I was motivated to write The Still Voice because of family stories I’ve heard throughout my life. I’d heard many as a young girl living in Germany, and more when I visited in 2007. The stories do not grow richer over the years. They gain an added perspective. I suppose when I reach the age of ninety-four, like my aunt Maria in Germany, the year I had breast cancer will have better perspective. Right now, I can’t put how I feel about it into print. This is not a profane blog.

An exquisite little glass pumpkin arrived on my doorstep yesterday morning, a gift from a dear friend in my writers group. It was a magical start to an intimidating day. I spent five hours of it in a series of preoperative meetings at the hospital.

It’s all such a jumble. There were forms to fill out and co-pays to pay. There was an electrocardiogram and two blood pressure checks. Results from more tests were in. Everything looks perfect. I’m the picture of health. Couldn’t the breast cancer be a misdiagnosis? No, it’s all too real. My surgery is scheduled for October twenty-sixth.

I told my physician I expect to spend the twenty-four hours before the operation alternately fainting and vomiting. She told me to listen to the “affirmations CD” the hospital has provided. Apparently jumpy-as-a-cat, Type A persons are not welcome on the surgeon’s table.

The soothing affirmations CD, it turns out, can even be listened to over headphones during surgery. It’s remarkable what’s available these days. I learned that sprays for the tongue can be had to relieve anxiety and help with sleep. I’ll be looking for these in the supermarket today as I wake with panic attacks every night. I have a mortal fear of being cut open with knives.

I asked the surgeon about the chance of cancer recurring with a lumpectomy (tumor is removed) compared with a mastectomy (takes the whole breast). The treatments, she said, are equal. With lumpectomy, the percentage of recurrence stands at between eight and ten. In mastectomy, the percentage is about four. But when cancer returns in the area where a breast has been removed, it will be closer to the bone and more dangerous.

I am blessed in so many ways. I’m an excellent candidate for a lumpectomy. I have a surgeon with a fantastic reputation, someone who is sharp and nice--a rare combination. The survivability for my type of cancer is high. And I have a supportive network of family and friends. Thank you all for being there.

People really don’t know what to say on hearing bad news. The reactions to my telling family and friends about my breast cancer diagnosis range from touching to amusing and just plain odd. I thought I’d write about some of the responses today.

One friend called to cheer me up and told me about her own health issues. She concluded with, “Of course, I can’t imagine getting your diagnosis. I haven’t had anything that catastrophic happen to me.” Thanks. I feel better now.

Another friend wanted to analyze my medical condition. Later she sent me an email and parroted some of the things I’ve written in this blog back to me. That was odd.

Much of what’s happened has been beautiful. In all our lives, my brother and I have never exchanged words of endearment. When he learned of my diagnosis he called to tell me that he loves me. My husband said, “When you love your wife, you do everything you can to help her through it.” My mother brought roses and baked me a cake with plums I’d given her from the produce mart.

Some of the emails I’ve received have been eloquent. I’d like to share a few of them:

“I wanted to let you know that you continue to stay on my mind and in my heart. Sometimes I speak my thoughts out loud to you; just know I am sending you constant thoughts of love, care and healing. I hope you can feel my thoughts embrace and hold you with tender love.”
--Cheryl H.

“I am so sad to hear of your recent news. I read every word you posted on your blog. You are an amazing writer and I can’t wait to read your novel when it goes to press. Sophia intrigues me. I was deeply moved this morning reading your story and the courage and tenacity you are exhibiting facing your cancer. I’m rooting for you.”
--Tracey R.

“You are probably saying what so many women think but are afraid to say and I appreciate it so much. With your wonderful gift of writing, you are telling others that it is okay to have those feelings, to cry and to be angry. I have only been able to imagine what someone just hearing that you have breast cancer can be thinking, now I can know and thank you for that. I think your blog will help many. My best thoughts and prayers.”
--Sue O.

Then there was the friend who called to tell me of her double mastectomy. I should keep blogging, she said. It was good that I was reaching out. I asked whether she’d told anyone of her diagnosis. “No,” she said. “People have a tendency to write you off.”

Nobody had better write me off. If they do, I’ll come back and haunt them.

Lately I’ve been talking to the offending body part. “What’s the matter with you? Why are you turning on me? What have I done to you?”

I’m curious whether others who receive a diagnosis of serious illness talk to the affected organs or limbs. At least I can see mine. I can’t imagine directing questions to a pancreas or spleen. Where would you even look?

Doesn’t matter. I’m not getting any answers.

They say the first thing a woman does when she’s diagnosed with breast cancer is to question how she might have gotten it. Which of life’s choices could’ve led to it--garden pesticides, household cleaners, birth control pills, children/no children, hormone replacement therapy/or no HRT, alcohol, smoking or second-hand smoke, our drinking water?

Some years ago a survey was done in Marin County, Calif. because the county’s incidence of breast cancer is so high. I had to laugh at some of the theories that surfaced afterward. One of them postulated that the women of Marin drink more alcohol and are more apt to subscribe to HRT. Well, a liver dysfunction has prevented me from drinking alcohol these past twenty years, and I never had hormone treatments. Let’s broaden this research.

On November 18, 2009 there is a community forum to do just that. It will look at the connection between breast cancer and the environment. I hope I am strong enough to go. The forum will be held from 7:00 to 9:00 p.m. at the Cavallo Point Lodge in Sausalito. The keynote speaker is Dr. Linda Birnbaum, director of the National Institute of Environmental Health Sciences and the National Toxicology Program. The event is free, but they want people to register at http://www.zerobreastcancer.org/. (The site also gives seven ways to reduce the risk of getting breast cancer.)

Maybe I will see you there.

I declared a moratorium on discussing breast cancer over the weekend. I’ve spoken nonstop on the subject since my diagnosis ten days ago. I’ve talked with survivors and researched it on the internet. I’ve met with my surgeon and my husband’s physician, a man who generously gave of his time to answer lingering questions. Sometimes we can know too much.

I have to think of the German people during World War II, the era in which my novel, The Still Voice, is set. As the war progressed they were told less and less. In fact, while German soldiers were dying in Russia by the thousands, Hitler’s Propaganda Minister Dr. Joseph Goebbels gave speeches proclaiming how well the war was going. Of course, the truth filtered out in letters the soldiers mailed home. No wonder Goebbels’ radio broadcasts became known as “Clubfoot’s Fairytale Hour.”

In the spring of 2007 I stayed a week in Wiesbaden, Germany with a childhood friend of my mother’s. On a walk through their old neighborhood, the woman pointed out a jail near the street where my mother had lived as a young girl. “We thought the Jews were being held in that jail,” she said. “Can you imagine? It has seven cells.”

Wiesbaden’s Jewish population stood at its highest in the 1920s, at a little over three thousand. By the start of the war, their number had dwindled to twelve hundred. In 1942, the city’s remaining Jews were deported to death camps. The citizens of Wiesbaden were told the Jews were being resettled in Theresienstadt--a spa city to which they could retire in safety.

Sometimes one can know too much. I wonder what course World War II would have taken had the German people known more.

This morning I’m thumbing through a little book that dates back to 1896. Its German title translates to “Solace for Troubled Hearts.” It was my grandmother’s, and I can see by the worn brown-speckled cover that it was much used.

My grandmother did not have an easy life. She worked on a farm in Bavaria alongside her parents and several siblings. When she was old enough, she became a nurse in a hospital in the big city of Wiesbaden. She endured World Wars I and II. She met her husband, a handsome mounted patrolman, while working at the hospital. They say when you marry someone beautiful that you never have all of them; part of them belongs to the world. From what I understand, my grandfather spread himself around fairly well.

In my novel, “The Still Voice,” the main character’s mother Brigitte quotes from the Solace book now and again. On one particularly hard day, she reads this quote to her daughter, Sophia: “I will pray. God will give. From him, all things flow. Light and joy, solace and life, as though from a bountiful sea. I will pray. God will strengthen. Should I encounter stormy skies, prayer will still my soul. I will pray. God will save . . .”

Reading through this slender volume makes me feel closer to my grandmother, gone almost thirty years now. I often wonder which passages were her favorites and wish I shared her strong faith. It is sometimes hard to believe there is a God. Why would a God visit the scourge of cancer on this earth? Why would a God make the children in the slums of India and Africa suffer so?

There are too many things for which we have no answer. I do know that my beautiful pragmatic grandmother would not have tolerated these maudlin musings. She loved to laugh. She lived to the age of ninety-one. I’m sure she would say that her namesake granddaughter will, too.

I will pray. God will strengthen. Should I encounter stormy skies, prayer will still my soul.

Last weekend I spent an afternoon with a wonderful friend whose husband works for Genentech. We talked about the advancements in cancer treatment the company has made. I’ve taken the opportunity to investigate Genentech’s web site. I scared myself pretty good.

According to Genentech’s research, more than 192,000 American women will be diagnosed with breast cancer in 2009. More than 40,000 will die from the disease. Women with HER2-positive breast cancer are at a “much higher risk for early recurrence and death as a result of their disease, compared to women with HER2-negative breast cancer.” My HER-2 results came back “undetermined” and have been sent to a San Francisco lab for further analysis. I should know the results one week from today.

There is plenty to worry about, and naturally I’ve been obsessing over every bit of it:
--I worry about the drugs administered before surgery as I have a dysfunction in the liver that prohibits processing alcohol of any kind. Lately my system has reacted badly to the most common cold medicines (anything with Sudafed is out). Even prescription eye drops caused headache, nausea, and rapid heartbeat.
--I’ve spoken with a woman who underwent two surgeries on the same breast, the second one much more radical, because “clear margins” weren’t obtained with the first surgery. Getting clear margins is critical because it means the cancer cells in the tissue surrounding the mass itself have all been removed.
--I’m afraid the surgeon will want to prescribe Tamoxifen, which is standard practice for women with estrogen-positive tumors. Tamoxifen blocks the growth of cancer cells. Its side effects include: blood clots, strokes, uterine cancer, and cataracts. Other than that, piece of cake. Whatever side effects there are, I know I can expect to have them in spades.
--I worry about which treatment method to choose following surgery. I’ve known one individual who had only radiation following her surgery. Her cancer returned, and she passed away within a year. Everyone I know who has had some form of cancer, and chemotherapy thereafter, has survived many years. The very thought of chemotherapy makes me shudder.

My father, who had colon cancer at age 78, is my role model. He is a survivor and will be 82 this December. Everything has to turn out well for me. My father has already signed me up for the breast cancer walkathon in October 2010.

The response to my blog yesterday was overwhelming. I’m grateful to everyone for the telephone calls and emails of support. I thank the neighbor who raced to my door to deliver a hug and a good dose of humor, both so important. I’d also like to thank a breast cancer survivor in my book club and her husband. Their calm solid advice in those first hours following my diagnosis was critical to saving my sanity. Though, they say writers have no sanity. But that’s a discussion for another day.

It’s amazing to me how many women in my small circle have had breast cancer: three in my book club, two neighbors within a stone’s throw of my house, a close friend’s sister who had a double mastectomy this June.

The surgeon who will operate on my tumor tells me the survival rate is now eighty-five percent.
She called me yesterday with good news. My chest x-ray shows the lungs are free of cancer cells. The blood work shows the liver and bones are clear as well.

There are so many medical terms I never thought I’d have an interest in or need to know. My HER2 report came back undecided and has been sent to a lab for more analysis. According to the Mayo Clinic, HER2 stands for human epidermal growth factor receptor-2. If the HER2 report is positive, that means the cancer is more aggressive.

I’ve been thinking of the hours I spent researching osteomyelitis, a bone infection I gave to the main character in my novel, The Still Voice. How dry that research was compared to what I’m looking into now. Still, for my character Sophia, the news that she had osteomyelitis in her foot was no less devastating. Imagine being a young girl in a prestigious dance school—a feeder school to a major ballet company—only to be told you should not dance. That story is taken from real life. It happened to my mother.

Ironically, Hitler’s Propaganda Minister Dr. Joseph Goebbels suffered osteomyelitis when he was a boy. An operation on his left thigh was unsuccessful and left that leg shorter than the right. He was crippled for life.

That’s all for today’s report. Its focus is more medical in nature than I’d intended. The content will probably be different every time, and it will come out on a semi regular basis.

Juliane C.

Summoning Courage

Welcome to October. My favorite month of the year. It's now five days since I've been diagnosed with breast cancer. I'm yet another woman in Marin County, California with the disease. It's epidemic, and I feel like a statistic. I'm trying to summon the courage I've given Sophia, the character in my novel, The Still Voice. Sophia experiences many hardships growing up in Germany during WWII--some of them at the hands of the Gestapo. She joins the Edelweiss Pirates to fight the Nazis, to avenge what happens to her as a young girl.

I don’t feel courageous this morning, October 13, 2009. When my husband’s alarm woke us both at four thirty I was babbling, “There’s a yellow bus. I could step in front of the bus, and it would be over.” He saw it as foolish talk, for which I’m glad. I don’t want to step in front of the school bus that circles through our valley every afternoon at three o’clock dropping off schoolchildren. Though it certainly would simplify things. There’d be no more looking for an agent or publisher. There’d be no facing a battle with cancer.

I thought it would help my morale to talk about it with friends and family. It has. Now I’m talked out. I don’t want surgery and radiation. I don’t want to know if it’s spread to my liver, lungs, lymph nodes or bones. I don’t want to worry if I should have chemotherapy, too. I just want my life back. I want to revel in writing every day, finding the perfect words for my story. Why me? Why this? Why now?

I’m starting to cry again, and have to stop writing. I’m sure I’m the world’s biggest baby. Millions of women have faced breast cancer with the courage of my Sophia. I’ve never written a blog before. I wonder why I’m doing it, except for the fact that I’m a writer. It’s what I do.

Juliane C.