Life lessons from the trenches of cancer survival


On my neck there’s a large, upside-down L-shaped scar. One leg of the L runs from my right shoulder blade upward to just below my right ear; the other leg takes a 90-degree turn, following the jaw line to my chin. The right side of my neck — the inside of the L — looks as if it’s had glands, cartilage and muscle scooped out, leaving a tough, bumpy, uneven cavity. After the surgery, a friend joked that I should put Silly Putty on my neck.

No Silly Putty, no cosmetic surgery. My neck has remained exactly as it was after the operation. It’s a souvenir of squamous cell carcinoma — cancer — which started in the right tonsil and metastasized to the lymph nodes, diagnosed and treated 15 years ago.

The day I was told that I had throat cancer, I was furious. There was no logic to it. I’d never smoked, didn’t drink, hadn’t eaten red meat in more than 25 years. So why me?

There was only one way to deal with my fury. I went out and had a real hot dog with sauerkraut. Much better than those meat-free — and taste-free — soy dogs I’d eaten for so long. With each bite, I looked up at the heavens and shook my fist: There! Take that!

In fact, it’s that semidefiant attitude that helped me get through the punishing treatment: massive amounts of throat radiation followed by a radical neck dissection.

Bernie Siegel — the oncologist whose tapes I’d listen to in the car while going back and forth to the hospital — says that one should be a “good-bad patient”: question everything and demand honesty and clear explanations from health-care professionals.

But, Siegel stresses, once you decide on a treatment, stick with it.

Here’s something that helped me: Although I was optimistic, I didn’t see treatment as an attempt to “beat” cancer. Right from the beginning I thought of cancer as my teacher, an experience I was going to learn from.

What did I learn? For one thing, when you accept help from others — which was hard for me — it not only makes you feel better, it also makes the person helping you feel better. When I started treatment, my older son, Rafi, was just finishing his freshman year at an Ivy League school. He took a year off to help me. He didn’t think of it this way at the time, but when he looks back on it now, he says that he cherishes that year.

After I was diagnosed, I was called and visited by many well-meaning people who suggested alternative treatments: from special diets to fasting to massive doses of vitamins. I listened politely and then plunged full bore into the most up-to-date medical treatment available. Oh, I used some unconventional techniques to complement treatment, but not as a substitute for Western medicine.

While going through radiation treatment, I meditated every day. This involved breath control and visualization until I’d reach a state of self-hypnosis. While in a trance, I’d imagine a kind of Pac-Man figure entering my body and eating my cancer cells.

Did it help? Who knows? It felt good, and that’s what counts. Meditation — or prayer or yoga — certainly can’t hurt, so long as it’s not used in place of standard treatment.

While you’re going through treatment, be easy on yourself. If you want to be alone, then be alone. If you don’t want to talk to anyone, then don’t. Recognize your limits, and don’t let anyone talk you out of them. If, however, you want to interact with family and friends, then by all means do so. And when you’re tired, kick them out. Be strict about this.

The medical facility where I received treatment is one of the most prestigious in the world, but some staff members had a lousy bedside manner. One resident — I thought of him as Dr. Worst-Case-Scenario — would always give me his gloomiest predictions.

I never let it affect me. The way I look at it, the job of any medical facility is to provide the most skilled, cutting-edge treatment, and that’s it. But that’s more than enough. If you need happy talk and hand-holding, that’s what family and friends are for.

How can you find the right medical center for you? Ask others in your area who have gone through similar treatment. Talk to your family physician. Consult magazines that rate hospitals and treatment centers. One source is the annual issue of U.S. News & World Report that lists each medical specialty and ranks facilities throughout the country. You can access last year’s rankings via its Web site or at your local library.

Some years back, Norman Cousins wrote about the healing power of laughter. It worked for me. Forget subtle humor. You want the fall-on-the-floor-bust-a-gut-roaring kind: early Woody Allen movies or Peter Sellers as Inspector Clouseau. There are times, though, when other types of movies work, too. During the worst moment of treatment, my pain was eased by watching Fred Astaire and Ginger Rogers glide across the dance floor.

Make no mistake: Cancer — and its treatment — can be horrendous. I wasn’t able to eat, I had no energy. Every day I was faced with my own mortality. But that helped me put priorities in place: seize the day and all that.

Once I recuperated from treatment, I made my own bucket list. After having lived what I felt had been a self-indulgent life, I was now determined to try something different. So I worked for the Shoah Foundation, which assures that Holocaust survivors’ testimonies become a permanent record.

I joined groups that explore life; reconnected with friends and family; published many articles — and a book — on topics close to my heart; volunteered as a writing coach for inner-city kids. And I’ve been a mentor for others going through cancer treatment, sharing what I learned, trying to make a difficult journey a little easier.

Nowadays when I look at my neck — at the scar, bumps and cavities — I feel nothing but gratitude: It’s a reminder of the treatment that saved my life.

And it’s a reminder that having gotten cancer in the first place also saved my life.

Steven Firestein: Making Magic for Children


 

Steven Firestein thought he had it all. At 27, he owned a plush Encino home, drove a Cadillac and made a nice living as a real estate agent. Then he felt a bump on his scalp.

For months, Firestein ignored the growth, fearing he had cancer. By the time he went under the knife, the tumor had grown to the size of a golf ball. Although, it turned out to be benign, the cancer scare forced him to reassess his priorities. Firestein, who had met several children with cancer during his doctor visits, decided to devote his life to alleviating their pain and suffering.

“I wanted to do something for them,” Firestein said. “I felt like they got a bad deal. I was no saint, and I thought, ‘Why was I spared? Why did they get cancer?'”

In 1994, a year after his brush with mortality, Firestein founded a nonprofit that would eventually become the Kids Cancer Connection. A descendant of cosmetics magnate Max Factor — whose family has donated millions to local charities — he invested $10,000 to get the project going.

Firestein decided his L.A.-based organization’s first program would be to give hats and caps to young cancer patients who had lost their hair from chemotherapy, radiation and other treatments. To Firestein, the Magical Caps for Kids program resonated strongly with him; doctors had shaved his head before removing his benign tumor, leaving him feeling vulnerable and self-conscious. To date, Magical Caps has given away an estimated 40,000 caps across the nation.

“I think what he’s doing is terrific,” said Marcia Helton, a 59-year-old professional caregiver from Los Osos, Calif., who has assembled a group of girls called the Little Angels to knit hats, scarves and blankets for Kids Cancer Connection and other charities. The caps “make kids feel cared about. It’s also great for their families, because the families feel better when their kids feel better.”

Under Firestein’s direction, Kids Cancer Connection branched out into new areas. In the late ’90s, the charity began sponsoring field trips to Disneyland, Knott’s Berry Farm and other attractions. Firestein, wherever possible, used his networking abilities to procure free tickets, even tapping the California Travel & Tourism Commission for vouchers.

Later, he helped establish the Courageous Kid Recognition Award to recognize the bravery of children battling cancer. Recently, a young boy undergoing a bone marrow transplant received the award at the Mattel Children’s Hospital at UCLA, where he now seeks treatment. More than 2,000 kids around the country have won the award since the program began in 2003.

Firestein himself has been recognized for his efforts. In 1995, he won a National Volunteer Service Award from Volunteers of America. In November, Rep. Henry Waxman (D-Los Angeles) took to the House floor to praise Firestein’s efforts.

Now a 40-year-old middle-school teacher in the Valley, Firestein still spends 20 hours a week on the Kids Cancer Connection, which has 300 volunteers nationally. Despite the time and financial demands, he has no regrets.

“I totally feel like I’m making a difference,” Firestein said.

Steven Firestein

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Cancer and Secrets


I have cancer. It’s thyroid cancer, which has metastasized. In every bone in my body there is a tumor eating it from the inside out.

That’s why I was at the Cedars-Sinai Outpatient Cancer Center on June 25, 2003, having a bone infusion. I sat there on one of those comfortable chairs as the drug slowly slipped into my veins to make my bones stronger.

And that’s where I saw her — an old friend and a former client who emigrated from Iran. We were so happy to see one another. She was there with a friend, who was there perhaps for a reason similar to mine.

We hugged, kissed and chatted, happy to find one another. We exchanged phone numbers and promised to stay in touch. After two hours her friend was done, so she kissed me goodbye and walked away. But before I knew it she ran back to me.

"Mrs. Homa, Mrs. Homa. I didn’t see you here. I did not see you here. My lips are sealed. I will not tell anyone," she said, and kissed me again.

And I said, "No, please, do tell. That’s alright."

"No, I won’t tell anyone, I promise," she said.

Cancer is scary. It is unkind. It takes away your independence and your freedom. But cancer is a big taboo in the Jewish community, even more so in the Persian Jewish community. Having cancer is kept as a secret of great shame to those involved.

You know I have cancer. Perhaps you have cancer, or someone in your family does. Or you know someone else who has it — a neighbor, a friend. Is it our fault we have cancer? Why should we carry shame? What is there to be ashamed of?

They say that thyroid cancer is from exposure to radiation, especially during childhood. Why do we get cancer? Is it the environment? Is it our diet?

Whatever it is, it’s not our fault.

Isn’t it enough that we have to go through treatment — receive radiation, experience chemo — every day of our lives when we have cancer?

Cancer is not something to be ashamed of. Cancer is an illness, like any other illness. You can take proper measures and appropriate steps to fight it. Cancer is not always a death sentence.

The cancer is escalating in the Persian Jewish community. In every family there are one or two people with cancer. But it’s all being hush-hushed and kept secret.

My girlfriend’s sister has breast cancer. My girlfriend was crying the other day because some woman made fun of her sister wearing a wig, asking her whether she has become Orthodox.

When my girlfriend found out I had cancer, she was absolutely shocked.

"But your father-in-law is a doctor, your brother-in-law is a doctor, your cousin is a doctor. How could you have cancer?" she said.

I told her, "It’s OK. I’m prepared to fight it."

I was at a Cancer Center luncheon, and met some Persian Jews there who nodded their heads and came to me.

"Please don’t tell anyone you saw me here," they said.

Why add additional stress by hiding? Accept it, announce it, fight it and try to beat it. That’s all you have to do. Many people that went to Beverly Hills High School have come down with various forms of cancer. But not all of them are speaking to Erin Brockovich. Instead of participating in her humanitarian effort, they are keeping quiet. What a shame.

What a shame to have cancer.

These days you will see me hanging out at the Outpatient Cancer Center, receiving treatment, radiation and bone infusion. You will see me watching people, observing, asking questions, trying to do something — no matter how small — for someone that could use it. I have always believed in doing random acts of kindness. Perhaps cancer will give me another venue to reach my goal to make this a better world; to tell people it’s OK to hurt a little and do what you can to get a little better.

When my dear uncle (of blessed memory) was shot in downtown Los Angeles, we all gathered at my parents’ house. My mom had gone through severe shock; she would not hear that he had passed away. My sister-in-law pulled me to the kitchen and said, "But his son is a rabbi…. How could this happen?"

"Sometimes bad things happen to good people," I said.

This is true about cancer as well. Having cancer does not make you a bad person. You just have to remember that bad things sometimes happen to good people. Then cancer — like any other challenge in life — can be acknowledged, accepted and dealt with.


Homa Shadpour-Michaelson, a counselor with
the Refugee Resettlement Project for the Los Angeles Unified School District,
wrote this article while she was undergoing cancer treatment last year. She
passed away on Feb. 26, 2004. Her daughter, Shanee, can be reached at shanee2@hotmail.com

Ready for Battle


Bad news on the cancer front. My CT scans, which had been 99 percent tumor-free for almost six months, show a few tiny lesions. A few tiny lesions in non-small-cell lung cancer is not a good thing. My oncologist nearly cried.

What I would give not to have to write about this. I hate lung cancer. I hate the tumors. I hate the failed miracle of the clinical trial with its snazzy new anti-cancer drug that had been working so well. It was wonderful taking those two tiny pills day after day. I felt like a bride renewing her vows every morning, wedded to another day of health. I pledged my loyalty to one treatment alone.

I’m moving on to other treatments, accepting that perhaps there never again will be a one-and-only. From here on, I am destined to fall in love, in the medical equivalent of serial monogamy, with whatever works, for however long the miracle lasts. My doctor promises me that there are many possibilities, and we’ll try lots of them. But when it comes to being cancer-naive, as they say in the oncology business, I’ve lost my virginity.

Don’t freak out. I am ready for battle. I’m healthy — other than my tumors. I have great strength and energy, am able to climb steep mountain paths and practice Kundalini Yoga. For the first time in my life, thanks to wheat grass and nutritional supplements, I have fingernails.

But there is this disease that’s pursuing me. To deny the truth gives the inner terrorist a cave to hide in, a built-in victory. That means I have to write about what it means, so that one day I, too, can take Kabul.

Cancer is not much different from any other war or any other thing that matters. We bring to it our whole selves, nothing omitted. We carry into the struggle our tolerance for vulnerability, our need for victory, our compassion for others and ourselves.

We resolve to prevail, at least to delay and delay and delay.

Most metaphors fail, but I do think of my self and cancer like Jacob’s predawn fight with the mysterious stranger. Who is it that I am fighting? Cancer is my self, of course. My deviant cells were produced by me. But I want to vanquish it, using my wits, my strength, my insistent will to live.

Yes, indeed, as my doctor suggests, cancer does test our faith. But faith in what? Jacob fought with the Angel, and earned the name Israel, one who fought with God and prevailed.

The morning after Jacob fought with the Angel, he went out to meet his estranged brother Esau. They ended their alienation and fell upon each other, and Esau kissed Jacob’s neck.

This is what God is for, what living is for, to end the estrangement within the family of man. In my own midnight battle with the Angel, my brothers and sisters reach out for me.

Soon after my cancer was pronounced "progressive," I met Margie Levine. Margie lives in Boston, but by coincidence she was in Los Angeles speaking at the Los Angeles Times health fair on the very day a friend told me her story. I flew across the San Fernando Valley to sit at her feet.

Twelve years ago, Margie, a health education teacher and social worker, was diagnosed with an asbestos-related lung cancer, mesothelioma. She was given six months to live.

Though she didn’t even tell her mother about her illness, she resolved to fight the disease by combining conventional and alternative medicine, using wisdom from both science and spirituality.

Margie and I sat up late into the evening. She told me what it takes to wage the fight: lots of broccoli, spiritual healing, practicing forgiveness, meditation, independent thinking — and never giving up hope.

"Network with everyone. Research everything. Rely on no one but yourself," she said. "And when you figure out what you’re going to do, get behind yourself 1,000 percent."

Today, her case is one for the books. She fought her hospital for the novel surgical strategy that saved her life. Her book "Surviving Cancer" really is, as the subtitle says, "one woman’s story and her inspiring program for anyone facing a cancer diagnosis."

I’m following Margie’s program. I’ve got only 11-plus years to go.

The Strongest Link


No matter how well things go in chemotherapy, the truth is, cancer always makes new demands on you. You can’t afford to be a k’nocker, pretending you know what you’re doing or what you’re ready for. It’s not as if you are in charge.

On the morning of my final course of treatment, I was ready for the long, seven-hour routine now so familiar to me. I was bringing irises for my room, pretzels filled with peanut butter for the nurses and anticipated visits from dear friends throughout the day.

It occurred to me that now, on my sixth round, maybe I was overdoing the need for support. The nurses have become like friends, and I knew I could count on them for diversion and hope, conversation about their art projects, pets and outside interests. Why ask others to interrupt their lives when by rights I could (should?) handle this last treatment alone?

My portacath was easily accessed. The intravenous drip of steroids and kidney stabilizers was set in motion. Emily, Joyce and I were discussing the career prospects of our adult children. At 2 p.m. the doorway filled; my oncologist and the staff brought a chocolate cake and sang "Happy Last Chemo to You!"

Yes, my last chemo day proceeded naturally, dull with the drip of healing.

At 6 p.m., we caught the mistake. The IV pump had a glitch, and I had not yet begun Taxol, the first and longest part of chemo treatment. For two and one half hours, while Susan, Cynthia and Rona had been discussing art museums and second careers, I’d been getting nothing from a blocked port.

And so I was back at the beginning. Not just the beginning of the day, but, my thoughts sent spiraling, the beginning of my life. Fear took over, my blood pressure rising into the stratosphere. And I knew, with a certainty only six months of lung cancer could produce, that this was bad news. My grandmother, who died before I was born, had had high blood pressure, followed by a stroke. She’d gone blind. All my life seemed pointed at this moment, this awful dark joke. Maybe cancer wouldn’t kill me, but blood pressure might.

"Can you meditate?" nurse Stephanie asked as she turned down the light.

Yes, of course. I had practiced 20 years of meditation, plus visualization. Plus prayer. Not to mention yoga.

"Om," I began. And "Shalom."

I started the slow counting of the breath, in and out. I saw myself on a sandy beach of a tropical island at sunset. I breathed God in, and tried to breathe fear out.

Nothing worked. The slower I breathed, the worse my fear became. I was the proverbial speck, a victim of a senseless universe, with the terror of my grandmother’s legacy whispering in the wind.

And my blood press stayed high.

Then I heard the rustle of leaves. I wasn’t alone, of course. Cynthia and Rona were bringing back soup and sandwiches. But Susan was there, flipping through the newspaper nearby.

"Hold my hand?" I asked her. Within minutes, I was breathing normally. My blood pressure stabilized.

So on the very last day of chemotherapy, one valve of an IV tube was constricted, but another valve, that of the heart, opened up.

I know nothing about bravery. I know only about need. Reb Nachman of Bratslov calls prayer the cry of the brokenhearted to a father who is far away. Maybe so. But prayer can also be reaching out, to friends who are close at hand.

Alone, I am the weakest link. Together, there are soup and sandwiches for all.

Visiting the Sick


You’d have no trouble finding me in the treatment area of Cedars-Sinai Cancer Center. Even from a distance, mine is the little roomlet that rings with soft laughter and the sound of — well, yes — a party going on.

How dare I have fun during chemotherapy? It’s not that I look forward to seven hours of treatment. But with four of six rounds behind me, I no longer feel I’m heading into an abyss.

I load up my suitcase with fresh flowers, pretzels stuffed with peanut butter (nurses love them), chocolate-covered peanut butter cups (Leslie, my friend from college, loves them), Raisinettes (I love them). As I pack I’m thrilled that the whole day’s dance card is filled. I will not be left alone.

My small room looks just like any other, with a bed, three chairs, a television and videoplayer. But it’s my friends that make the experience one of pleasure and healing.

Yes, you’re right, I’m heading down my favorite river: Denial. I’m letting my friends distract me from the fact that I have lung cancer for which the word "cure" does not exist.

Certainly I know from A to Z what a typical chemo day brings: large doses of anxiety over whether my white-blood-cell count will be high enough to qualify me for treatment, coupled with large doses of Zofran, the high-octane anti-nausea drug that makes Carboplatin and Taxol tolerable. I will sit until past sunset with my portacath plugged like I’m some electric coffee pot into an IV drip filled with poison trying to kill the bad cells without killing me.

But why should I dwell upon such puny details when I know that Diane, a romance writer and swell raconteur, is driving me to my CAT scan? Leslie is bringing lunch. And before Jill, the Cedars art therapist, has a chance to take out her brushes, I will see Cynthia, Susan, Rona, Marilyn, Marika or any number of surprise guests. Soon enough, we’ll be laughing and talking as if I weren’t as bald as a cue ball and the nurse wasn’t monitoring my blood pressure every 15 minutes. Yes, even in chemotherapy a girl can still have fun.

This is not the attitude I started with. My initial bias was to tough it out alone, to attend my own funeral, working grimly through long months of my illness with my trusty laptop; to let one friend sit with me for the long day to watch "Silence of the Lambs."

But even if I didn’t have Chemo Brain incapable of focus, that scenario does not fit me. And it does not adequately fulfill the Jewish principle of bikkur cholim, visiting the sick.

Bikkur cholim is designed as a community effort, a way in which we all, sick and well, face mortality together. The Talmud states that a person who visits the sick removes one-sixtieth of the illness. Either Cynthia could visit me 60 times or 60 people can visit me once, which is what happened during my lung surgery when intensive care was filled to overflowing. It drove my surgeon crazy, but soon I was feeling fine.

I’ve learned that my illness is not mine alone, after all. It has caused my terrified friends and fellows to schedule long-overdue physicals, begin exercising and get chest x-rays. Who knows, maybe I’ll save their lives, just as they, through their visits, are saving mine.

And yes, I do believe that visiting, like prayer, is saving my life. The story is told of Yochanan Ben Zakkai, a great healer. One day Ben Zakkai became ill. He was visited by Rabbi Hanina, who held out his hand. Ben Zakkai took the hand and stood up. Why couldn’t Ben Zakkai stand up by himself? Because a prisoner cannot free himself from prison, notes the Talmud, especially from the prison of fear, which, along with travel and sin, are the three elements that destroy a person’s health.

That’s why, as Rambam explains, every sick person needs visitors, except those suffering intestinal disease (gas embarrasses the patient) or headaches (conversation creates a racket).

I know people can get through chemo alone. I’ve heard about the lawyer with the laptop whose practice never missed a beat. She put no demands on anyone. But she gave no one the privilege of service, either. The rules of visiting are simple: stay upbeat. Avoid morbid gossip about, say, others who just died of lung cancer. Enemies and depressed people stay away.

During chemo no. 4 last month, the conversation rivaled the best soirée in town: it included the wisdom of the Bush administration, the problems of picking a middle school and college, the question of whether women need breasts after child-bearing, the value of Botox injections, memories of an affair with Warren Beatty (not mine), reviews of the best movies and theater shows, and advice on how to get a film produced in Hollywood.

Some of the best times of my life have happened during treatment. Imagine that.

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