Cancer gives musician a new song


This time, Charlie Lustman hadn’t come to Cedars-Sinai Medical Center for medical tests or to endure another round of chemotherapy. Despite having lost three-quarters of his jawbone, Lustman had come to celebrate, to inspire — and to sing.

Lustman was at the Samuel Oschin Comprehensive Cancer Institute’s Cancer Survivors Day program to officially launch “Made Me Nuclear,” the album he wrote, arranged, produced and performed. The 12-song compilation chronicles his cancer odyssey, from receiving the diagnosis to experiencing chemotherapy-induced forgetfulness to feeling grateful to those who supported him along the way. The songs range from poignant ballads contemplating mortality to the humorous title song about being injected with a radioactive substance for a diagnostic imaging procedure: “Yes they put me through the scans/Now I’m a subatomic man/I’m a human mobile phone….”

“This is the first ever pop album about cancer,” said Lustman, 43, who decided to create “Made Me Nuclear” a year to the day after receiving his diagnosis. “There is no other album which directly speaks to the cancer experience.”

Lustman completed the album on March 1 — exactly two years after being diagnosed. Next month, he will begin performing a theatrical adaptation of “Made Me Nuclear” at the Santa Monica Playhouse. The one-man show combines songs with dramatizations of Lustman’s experience. He hopes to tour nationally beginning next year.

Lustman’s cancer odyssey began when he noticed a small bump on his gum. His dentist couldn’t identify it, nor could his periodontist, who ordered a biopsy just to be safe.

The bump turned out to be osteosarcoma, a rare form of bone cancer. Lustman’s specific form of the disease is diagnosed in only about 30 people a year nationwide, according to Dr. Charles Forscher, Lustman’s oncologist and medical director of the Sarcoma Center at the Samuel Oschin Comprehensive Cancer Institute.

“I’m an extremely lucky man. Statistically, I’m supposed to have won Super Lotto three times before getting this,” Lustman said. “I turned the statistic into something positive and realized that my whole purpose … was to make a difference in the world and help other people affected by this disease or other hardship. I just had to go through a two-year journey through cancer to come out on the other side.”

The journey included surgery at UCLA’s Head and Neck Institute, which entailed the removal of half of his jaw. After the surgery, Lustman and his wife, Ri, who was pregnant with the couple’s second child, had to wait 10 days for tests to reveal whether all the cancer had been eliminated. It hadn’t, so Lustman underwent a second surgery. The couple endured another 10-day waiting period, and this time the results were clear.

Lustman then returned to Cedars-Sinai for a year of supplemental chemotherapy to destroy any remaining cancer cells. He had timed the chemo sessions around his wife’s due date, but the baby arrived five weeks early. So Lustman went from having chemo in the hospital’s basement to the third floor Labor and Delivery to witness the birth of his daughter, Gita.

After he completed chemotherapy, Lustman received a prosthetic mouth piece, which enables him to speak and sing.

A Santa Monica resident, Lustman grew up in Beverly Hills. He graduated from the Berklee College of Music in Boston with a degree in television and film scoring. After writing commercial music in New York, he spent multiyear stints in Denmark performing and writing songs for Scandinavian artists.

In 1998, Lustman purchased and renovated the Silent Movie Theatre on Fairfax Avenue, which he operated until 2006. He had begun work on “Shaya,” an album about his young son, and was planning to sell the theater in order to focus on his musical career. Cancer expedited the process.

“When you get that kind of diagnosis, you realize you might not have a lot of time on the planet,” he said.

The son of a Holocaust survivor, Lustman drew parallels between his own experience and his father’s.

“When I got my head shaved at the beginning, I felt my father in the camp,” he said. “And when I couldn’t eat anything solid for three months because they had removed most of my upper jaw … I felt what it was like to just have soup… All the pain and all the suffering that my family endured watching me suffer…. It was a very deep suffering that I had never experienced before.”

But here at the July 31st Cancer Survivors Day celebration, the suffering seems like a distant memory.

Dressed in white tennis shoes, white pants and a white shirt emblazoned with his album’s purple nucleus logo, Lustman addressed the audience gathered at Cedars-Sinai — some currently battling cancer and others who have completed treatment. “The [time] here has changed me into something different — something better.”

For more information about Charlie Lustman’s album or performances, visit www.mademenuclear.com

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.

Eva’s prayer


It’s not often you see someone pray to God with all their might for something to happen, and then, when God doesn’t make it happen, thank Him profusely andeven celebrate.

My friend Eva Brown prayed to God with all her might.

She was praying the day she called me a few months ago and said, “Can you come over now? I need to see you.” By a stroke of luck, I had just finished a meeting in her area, and I went right over.

It was one of those bright California afternoons that make you feel guilty if you’re not in a sunny mood. And I was in a great mood, until I got to Eva’s place, a little bungalow in West Hollywood where she has lived for over half a century. With the sun’s rays piercing through the drapes of her immaculate living room, Eva sat on her sofa and gave me the news: She had stage IV leukemia.

Her spleen was so swollen by the tumor that fluid had entered her chest. At 81, she was too frail for surgery. Before doctors could start aggressive chemotherapy, Eva would need a bone marrow test. She was told the earliest it could happen would be two weeks. When she got to the doctor’s office, he changed his mind and said it needed to be done in a hospital. That meant another two weeks. All along, the pain was getting worse.

That’s when Eva started praying.

She saw all these obstacles as a sign that her time was up. Her daughter was not well. The thought of losing her had always haunted Eva. So she figured this was her chance to be the sacrificial lamb that might save her daughter.

“Don’t take her, take me,” she prayed to God day and night, while reading Tehilim (Psalms).

As she was telling me all this, my discomfort grew. This wasn’t the Eva Brown I had come to know — the feisty Holocaust survivor who for years had talked to thousands of people about the preciousness of life. This Eva Brown was ready to throw in the towel.

But I just listened, awkwardly, not agreeing with her resignation, but also wanting to provide comfort and support. As she saw things, after years of teaching people how to live, maybe her new mission would be to teach people how to die: how to accept one’s fate with grace and dignity — how to live while you’re dying.

We agreed that we would film her last statement, which we did a few weeks later. It was not pleasant. The video is a soul-searching, painful summary of her life.

In the meantime, while Eva was anticipating the next world, her good friend Sara Aftergood introduced her to another doctor, Sara’s husband, David, who after talking to Eva immediately put her in touch with a specialist, Dr. Solomon Hamburg. The new doctor and Eva hit it off. Hamburg, a child of Holocaust survivors, took her on as his personal mission. The bone marrow test was done in his office in a day. The chemo would start a few days later, every other Monday for eight weeks. Hamburg had no clue that Eva had been praying for God to “take her.” All he wanted was for Eva to live.

During the chemo treatments, Eva would call and tell me about the incredible physical pain she was going through. It seemed that every part of her little body was aching. She was in such pain she no longer had the strength to pray. When she finally told Dr. Hamburg that even with painkillers her suffering was becoming unbearable, he didn’t downplay it. To the contrary, he told her it was “useful pain”: It meant that the treatment was working.

He pleaded with her to hold on and fight.

He wasn’t the only one who helped Eva fight through the pain. For years, Eva has had an extended family down the street at Maimonides Academy. The head of the school, Rabbi Boruch Kupfer, often came to visit. One day, knowing what Eva was going through, he asked her what they could bring. Eva wasn’t shy: Food, she said, and lots of soup. She had no strength to cook, and she loved soup.

Well, don’t ask. Overnight, the leaders of the Maimonides PTA — Kathy Hiller and Susan Tonczek — turned into managers of a catering operation. For several months, hot, homemade food cooked by Maimonides families was delivered to Eva’s door, along with words of comfort from regular visitors like Marci Spitzer and Sabina Levine.

It was clear that everyone in Eva’s life wanted her to fight and to hang in there, not least her ill daughter. But the pain was so deep she had trouble thinking straight. She started to see God everywhere. She saw God in her daughter’s eyes. She saw God in all the people who wanted her to live. She even saw God in the fact that she was in too much pain to pray for Him to “take her.”

Maybe, she realized, God was simply saying no, it’s not your time to go.

This helped her regain the will to live. Armed with the food deliveries from Maimonides, the dedication of Dr. Hamburg and the love she got from all over, she made it a personal project to conquer the pain of chemotherapy. Like she says now, pain became her “full-time job.” It’s not like she had no experience: Surviving 10 concentration camps in one year at the age of 16 had given her plenty of experience in full-time suffering.

As the weeks went by and her battle continued, her condition slowly improved.

On the Friday before Shavuot, Eva called to give me the news: Her cancer was in remission. The tumor had shrunk and was dormant. She still had some life left in her, and was full of gratitude to everyone who had helped her get through the ordeal.

Having regained some of her strength, Eva is slowly returning to public speaking, and praying with all her might that her daughter will get better.

She’s hoping that God, once again, will know how to answer her prayers.




Last year, Eva Brown talked with JewishJournal.com about her experience during the Shoah. Video by Jay Firestone.



David Suissa, an advertising executive, is founder of OLAM magazine and Meals4Israel.com. He can be reached at dsuissa@olam.org.

Breast Cancer Tips Doctors Don’t Share


My mother recently called me with a request: One of the moms at the elementary school she works at was newly diagnosed with breast cancer. Could I give her a call?

I immediately phoned Susan, a sweet, smart lady in her early 40s. She was weighing her options about surgery and doctors, and gathering information about her course of treatment. She was also terrified. I reassured her about the success of current cancer therapy, but what she really wanted to know were the little things, like does it hurt when your hair falls out? (No, but your scalp feels tingly, like someone pulled your ponytail too tight.) These are the questions that fall under “What you always wanted to know about having breast cancer but were too afraid to ask,” a category that is still too relevant.

This October marks the 20th anniversary of National Breast Cancer Awareness Month. According to the American Cancer Society, an estimated 217,440 people in the United States, almost all women, will be diagnosed with breast cancer in 2004. Despite growing awareness and funding for this disease, the incidence of breast cancer has continue to rise since the 1980s, and while detection methods have improved, there is still no foolproof prevention method.

So, for all those out there who are or will be new members of the Breast Cancer Sisterhood — the sorority no one chooses to join but is, especially in the Jewish community, very popular — here is a list of what to expect during treatment:

Surgery

There are many choices when it comes to breast cancer surgery: lumpectomy, simple mastectomy, bilateral mastectomy. If you decide to opt for the “extreme makeover,” take comfort in the fact that, at least, both sides will match.

The reconstruction process can be uncomfortable and it takes a long time. Be patient.

There are advantages to not having nipples. Clothes look better on you, it’s harder to tell if your breasts are uneven and no one knows when you are cold.

Hair

The best hair substitute for nighttime: ski caps.

The good news, for those of us who have had a close relationship with Gillette since the seventh grade: by the time your hair returns, you will actually miss shaving.

Be prepared for people, especially kids, wanting to touch your bald head.

Wigs are itchy, but if you buy one that fits your appearance, you will look and feel more normal.

Scarves and hats are a lot more comfortable, but they tend to draw attention to you, especially if you are young. However, I’ve noticed on the days when I am wearing a scarf, more people go out of their way to be nice to me — which is a big boost when you’re feeling unwell.

Not-So-Glorious Food

Although it might be tempting to eat your favorite meal the evening before or the day of chemo, don’t. The associations between food and nausea are so strong you might never want that meal to cross your palate again.

Along those lines, the best advice from my nutritionist, Rachel Beller, was to avoid eating good-for-you foods, like fish, around chemo days. Spicy foods and anything too hot or too cold should also be off the list.

Chemotherapy tends to make people anemic, so think Atkins.

You will crave strange things, or only be able to eat a certain food after one chemo session and a different one after the next. (For me, it was the Caesar salad from Sharky’s, alternated with, of all things, pea soup.) If it’s legal and you can eat it, go for it.

Speaking of legal: not only is it a bad idea to fast on the designated holidays when you are undergoing cancer treatment, several rabbis advised me you are not allowed to do so. God will understand.

Emotional Rollercoaster

PMS has nothing on cancer. You will be moody. Forgive yourself for it.

It may sound cliche, but cancer really does give you the opportunity to examine your life and your relationships and make the changes you have been putting off for years.

At least one friend will not be able to handle what you are going through.

Unexpected people will come out of the woodwork to support you. Outside of my family, my two best friends through this whole process have been Ronette K., who teaches at my mom’s school, and Linda C., my brother’s girlfriend’s mother. Ronette sent me funny get-well cards after every chemo (I had 10 courses) and kept me in mystery books during my recovery from surgery; Linda ended her chemotherapy the day I got my diagnosis and was my mentor through the whole treatment process. I wouldn’t have made it without either one of them.

All in the Family

Husbands/significant others are the greatest unsung heroes in this battle. Remind people to check on them instead of you every once in a while.

As with friends, some family members will handle your situation better than others.

Kids can be your greatest allies. For little ones, you don’t have to tell them much, just what they might need to know. Like that Mommy will be living in the bathroom for the next three days.

Beam Me Up, Scotty

Compared to chemo, radiation seems like a cakewalk. Some people do get exhausted from it, so while you may be feeling better, this is not the time to take up lacrosse.

Yes, you will be asked to get tattooed. If this freaks you out, there are alternatives, but a tattoo provides the best record for any possible future radiation. The tattoos are tiny, not the big, rosy “Mother” ones found on certain bikers. Your doctor can give you a note for the chevra kadisha (burial society) if you feel the need.

Know that, even if you do get the tattoos, the radiology staff will draw on you. With a big marker. In dark, purple ink. As if you needed one more thing to make you look strange.

Words to remember: body lotion. Some people swear by aloe vera; I like Aveeno with the colloidal oatmeal (which, by the way, doesn’t mean any kind of special oatmeal — it’s just minced up really fine so they can get it in the lotion).

The machinery used during radiation emits a loud, annoying whine that makes it difficult to lie still. Find a “theme song” you can run through your head to distract you. (Mine is the overture from “Star Wars.”)

Recovery

Just when you start getting good at dealing with the chemo and radiation, it’s over. Thank God.

Wendy J. Madnick was diagnosed with breast cancer in December 2003. She awaits the return of her hair with growing anticipation.

Fuzz


A day before I left for a vacation cruise to Alaska, I looked in the mirror and spied, atop my clean, bald head — Hair! There wasn’t much of it, standing less than one-sixteenth of an inch tall. But when I ran my hand over my crown, I felt the delicious tickle of stubble.

"It’s back!" I cried to my friend Susan, who was lending me a gown for the cruise’s formal night. We jumped up and down the way we did in high school when the latest "he" called. I’ve been a cue ball since Day 12 of my first round of chemo. All my hair is gone, including eyebrows and lashes. The only really bad part, aside from looking like a Conehead, is the way drafts of cold air make my forehead feel glacial. In Alaska, I spent time looking for bald eagles, seeking to join their minyan.

Still, the stubble signified as nothing else could that Taxol and carboplatin were leaving my system, and four months of bravery before the IV drip were at an end.

And I had been brave — if by that you mean accepting the inevitable without flinching. Brave and grateful, for the many lucky breaks of getting cancer in the 21st century, where we at least have a fighting chance of extra time. Yet my happiness at the sight of these tiny fractions of colorless cilia revealed a sullen truth: I hate wearing my wigs. They’re beautiful, probably nicer than my real hair. But they itch. And they make me feel anxious and schizophrenic, like the Cameron Diaz character in "Shrek," conventionally lovely only until sundown.

And I’m not so happy being bald, however lovely people find the shape of my skull.

The last time I wrote about hair and the cancer patient, I quoted two Hebrew definitions of female beauty, "yofi" and "chayn."

"Yofi" was my wig, conventionally pretty, phony and safe. "Chayn," the more internal attractiveness meaning "finding favor," was my bare head, either bald or wearing the baseball cap, naked but true. As I entered the world of chemotherapy, I wondered which would it be: wig or bald. But life is not either/or; it’s more complex that that.

For now, I had turned a corner. After chemo, I wanted my self back, not just my old pre-cancer self, but the new self that had grown and changed by circumstance. How to reconstitute this self post-chemo was the spiritual dilemma.

Aviva Zornberg, writing in "The Beginning of Desire," says that the biblical Joseph’s problem in reuniting with his brothers was to "remember" himself. They had ripped up his coat of many colors and sold him into slavery, depriving him of his family and tradition. Now they had to "reassemble fragments of his repressed past."

If I am to live fully in the aftermath (and shadow) of cancer, this is my task too. I can’t deny that time and security have been ripped from me. But also, I must not let bitterness cast me into the pit of paralysis. I regarded this vacation as a test: Which of these selves — wig or bald or both — would I present on the ship?

Fast forward to the good ship Statendam on its first night heading north from Vancouver to Seward into the heart of fjord country.

I’m in the library room, wearing my wig and makeup and a new dress, before dinner. True, the wig is phony, but it has panache. Two good-looking guys are talking Israeli politics and immediately invite my opinion. Before you can say "Yasser Arafat is no friend of peace," we are all best buds.

Fast forward again, it’s after midnight. We’re walking around the Promenade deck, me and one of the two fast-talkers. By now, we’ve been talking for hours, like we’ve known each other forever. Beyond Israel, we have nothing in common except that we’re both bald. Except, of course, he doesn’t know that. And if I have my way, he never will.

It’s a big if. Post-chemo, I’m alive with sensations I haven’t known since before my diagnosis. One of them is fear: If he kisses me, will my wig fall off?

And just as I’m thinking this, bathed in starlight and the soothing hum of a ship under the moon, he makes his move.

I turn to him. I prop my elbows on his shoulders and hold onto my hair for dear life. He’s a strong guy, and now I increase my grip on my head.

He moves his hand over my cheek. He goes for my hair. My wig moves, a full half-inch.

He stops breathing. He moves my wig again, this time on purpose.

"Cancer?" he says.

What have I got to lose? I take off the wig. Will he see the mark of "chayn?"

"Very sexy," he says. "You know, your hair is growing back."

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