Palo Alto Weekly

Cover Story - January 21, 2011

Second chance at life

Faced with the prospect of death, four people shift priorities while embracing life

by Carol Blitzer

Remember the old joke about the man who was asked what he would do if he had only a year to live? He said he'd stay married to his wife because every day felt like a year.

For people who have gone through a near-death experience or received a diagnosis that could shorten their life, the question of how one's life would change in the face of death goes well beyond a punchline.

Researchers have pondered the outcomes of near-death experiences for decades, especially since an early study that appeared in the medical journal The Lancet in 1991: The researchers found that people who have had a brush with death tend to come out more altruistic, less materialistic and less fearful of dying.

Not only do people who have near-death experiences have beneficial outcomes, but so do people (such as ER nurses) who witness them, notes Ryan Rominger, a faculty member at the Institute of Transpersonal Psychology in Palo Alto in a fall 2009 article in the Journal of Near Death Studies. People report greater spirituality and life changes, an increased sense of purpose and meaning in life, greater compassion for people and the environment.

Though the numbers of people who have faced down death and lived to tell about it are low, four local residents who have cheated death agree with the research.

Ken Byk of Menlo Park found his faith strengthened after two massive heart attacks and an out-of-body experience.

Ken DeLeon, a Palo Alto resident, and Ellie Guardino, of Menlo Park, both express a greater passion for living a meaningful life. And, they became less afraid of death.

And Palo Alto resident Sue Rinsky has devoted her time to volunteering with nonprofits and her synagogue following a leukemia diagnosis.

They sat down with the Weekly to share their stories.

Ken Byk turned 52 last April and ran San Francisco's Bay to Breakers 12k race two weeks later. Over the years he'd completed numerous charity runs and was fit and athletic.

Moments after crossing the finishing line, he suffered a major heart attack.

Luckily for him, an ER nurse and an anesthesiologist were nearby and performed CPR for 20 minutes until he regained a pulse. Later that day, at the hospital, he suffered a second heart attack. Tests showed 99 percent blockage of his main arteries, and he underwent quadruple bypass surgery days later.

Byk (pronounced "Bike") has no recollection of that day or the previous one — no memory of stopping by to pick up his race-registration materials or dropping off his dog at a friend's. He didn't even know what he was wearing that day until he saw the photo snapped as he crossed the finishing line.

What he does recall is having an out-of-the-body experience during which he frantically searched for a person in charge who could help a man in an orange shirt who was lying on the ground. He caught someone's attention and started taking him over to the downed man, only to realize that man was himself.

Six months had passed when Byk sat down to talk to the Weekly about his heart attack, surgery and recovery, and what has changed in his life.

"One of the powerful things I've learned is I have an amazing group of friends in San Francisco and the area here," he said. Friends "took over my business and my dog, my parents, my life. They not only helped with the practical aspects of my life but with my emotional well-being. They lifted my spirits."

The first task his friends undertook was locating Byk's dog.

"Fortunately, I gave an emergency contact. No one takes that stuff seriously," he said. That emergency-contact friend's wife went to Byk's Menlo Park home, opened his computer and found the e-mail list from his 50th birthday party. She "sent out a blast e-mail saying, 'Ken had a heart attack: Does anyone know where his car is, or his dog, Riley?'"

Another friend — who lived in San Francisco and worked in Novato — drove down to the Peninsula to make sure Byk's painting-company employees were paid. He also contacted customers and told them about the medical emergency and minded the business for a few weeks.

Byk's elderly parents drove up from Palm Desert to be with him.

"I was moved beyond words when I realized what my friends did for my parents," including finding them housing. "Everyone just adopted my family."

Post-heart attack, Byk did some soul-searching.

A practicing Christian, he felt a strengthening of his faith. Defying the survival odds and "having an out-of-body experience while lying pulseless has left me no doubt about having a spirit, and a profound sense that I was saved, for whatever reason.

"This is why I feel so compelled to do good works and to make a difference in people's lives — things that give life much greater meaning.

"Life is precious."

One way in which Byk is trying to help others is through a San Francisco nonprofit that helps at-risk youth get ready for work and life, called New Door Ventures.

For 10 years, Byk has served on the board and helped with the vision and operations of two for-profit businesses affiliated with New Door, a T-shirt and embroidery business and a bike shop.

But now he wants to become more directly involved with youth. So he sat down and conducted interviews with 10 kids to prepare some of the teens for a three-month internship with a law firm.

"I was blown away. I asked one, 'What are your greatest strengths?' He said, 'I don't know.' A 6-year-old in Palo Alto would know.

"These kids were so on fire because someone was taking an interest in them, many of them for the first time in their lives.

"You just want to spend every day, every week there."

He's also become a strong advocate for educating the world about hands-only CPR. He speaks often about the technique, which does not require mouth-to-mouth resuscitation.

At a recent walk sponsored by the American Heart Association, he spoke before 5,000 people, introducing a high-school group singing, "Stayin' Alive." That was no coincidence, or even a play on words. The tempo of the song sets the pace for the 100 compressions per minute required.

The technique requires 125 pounds of pressure.

"The petite M.D. anesthesiologist broke three of my ribs doing CPR. My heart surgeon said, 'Be thankful for those broken ribs' because that saved my life," Byk said.

And he's quick to recommend that anyone with a family history of heart disease get checked out before a heart attack. Although his parents are in their 80s, his grandfather died at age 51 from cardiac arrest.

The most obvious change he made was the pledge to never run a major race alone.

"Statistically, of those who have public heart attacks and are saved by CPR, 6 percent survive. If I'd been hiking in Tahoe a month later, at a higher elevation, alone, I would have dropped dead," he said.

Late last year, he brought his story to Menlo Park Presbyterian Church, where he usually attends The Cafι, a "relaxed, contemporary worship" service where he can drop by in a T-shirt and flip flops.

"If one in 3,500 takes something from my story, it's worth it. That's why I want to share it."

Byk said that after what he's gone through, he's "never going to say no to anything.

"I'm not going to turn down speaking opportunities, dinner invitations. It's just grabbing everything that life has to offer.

"I don't think twice. I go and do."

Ken DeLeon, a 38-year-old Realtor with Keller Williams Realty of Palo Alto, has already seen more than his share of personal tragedy.

When he was 15 his 17-year-old sister committed suicide.

At 26, while walking with his dad on the sidewalk in Boca Raton, Fla., he was seriously injured when a drug-crazed driver hit him at 40 mph.

And at 35, he was diagnosed with lymphoma.

Never has his positive attitude wavered. He recently completed a memoir, "Why Do Bad Things Happen to Sexy People?"

"Life is dynamic, chaotic and amoral," he wrote. "While we cannot entirely control circumstances, we can control our perception of and reaction to circumstances."

DeLeon had recently graduated from Boalt Law School and was visiting his folks in Florida when the car came out of nowhere, slamming into (and crushing) his right leg and throwing him through the windshield to land in the passenger seat.

The driver, high on a drug cocktail that included Ketamine and amphetamines, yelled at him to get out while beating him with his fist. Then the driver stopped and dumped DeLeon out of the car.

Seven months later, after a month in a hospital and six months of physical therapy, DeLeon acknowledged that he'd never surf, or play basketball, racquetball or tennis.

But "I can still run and walk fine," he said 12 years later.

Beyond healing — and confronting his brush with death — DeLeon pondered the purpose of life.

"Before the accident, my purpose in life was happiness. I wanted to be happy, to make friends and family happy as well," he said.

He soon changed his life purpose to what he calls "evolution, to maximize my potential, to evolve to the highest level possible."

Even sadness, he said, will lead to greater wisdom and evolution.

"I see the value in sadness and tragedy," he said, adding "I'm happy a lot of times, but happiness is a by-product of a life where I'm always growing and learning."

DeLeon had only dated his future wife, Megan, a University of California, San Diego student, a few times before his accident. When she caught a news account of his accident, she flew to Florida. After she returned to school, the two spoke daily on the phone.

"The accident made us very truthful, very vulnerable. There was no need for a faηade. It was a great time to form a lifelong relationship," he said. Two years later they were married. They now have four children under the age of 7 and have been married for 10 years.

DeLeon eventually took a job with Wilson Sonsini Goodrich & Rosati, a law firm in Palo Alto, and worked there two years.

"I was good at being a lawyer (but) I did not wake up with passion. Since over half our waking hours are work, I wanted work to be fulfilling," he said.

"I realized life can end at any moment. I wanted to live the life I wanted now and not wait."

Instead he chose real estate, where he said he's involved with the largest transaction of his clients' lives.

"You really impact them, become their friends. By sharing expertise you can help them achieve their dreams," he said.

DeLeon said he agrees that near-death has made him more altruistic, less materialistic and less fearful of death — especially the latter.

"With such a heightened awareness of death, I've gained a greater appreciation of life. I don't fear death; I fear living a mediocre life. I don't want a life filled with regrets. I try and make every moment matter because I realize it could be my last," he said.

Soon after the accident, he stopped what he called "spectating": Instead of watching the TV show "Friends" he hangs out with friends.

"The greatest crime against life is boredom. We have only one life. It could end at any moment," he said.

DeLeon's positive view was tested once more three years ago when he developed a softball-sized tumor on the same right leg that was smashed in the accident. His doctor told him his lymphoma correlated heavily with the earlier trauma, involving a lymph node that drains into the same leg.

Treated with chemotherapy and daily radiation, DeLeon said he was prepared for the cancer and whatever outcome prevailed.

"I resolved no matter what to be confident and optimistic. My attitude would make chances of surviving higher," he said.

To keep his spirits up when his hair was falling out, he invited friends over for a head-shaving party. He sported his Mohawk for at least two days.

And he continued to work, now as a Realtor.

"I felt if I didn't dwell upon the cancer I'd feel more normal and happier," he said. However, at 35, he lacked life insurance and was concerned that without his earnings his wife and children would be unable to stay in their Palo Alto house.

DeLeon's positive attitude impacted both his health and his business; he sold $30 million in houses in three months.

"I told my clients I was beating cancer and together we would destroy the housing market and successfully sell their houses. People understood and trusted me," he said.

His tumor was wiped out in about nine months.

"Now there's an 80 percent chance it won't come back. If it does, I will face it with the same positive attitude."

Since his accident — and bout with cancer — DeLeon has volunteered on the speaking circuit, appearing at Jordan and Terman middle schools in Palo Alto and throughout Silicon Valley.

"I tried to convey many lessons with the overriding theme: Although you cannot control life events, what you do with that event is within your power.

"I want to leave as much of a positive legacy as I can so I can feel my life has meaning," he said.

DeLeon has chosen not to hate the driver who wreaked such havoc on his young life, instead directing his feelings toward recovery.

"Before I could do 10,000 things. Now I can do 9,000. I'm going to focus on what I can do.

"Life is a self-fulfilling prophecy. If you think you will fail, you will always be correct," he said.

"We're all going to die. You want to make every day matter."

At age 46 Sue Rinsky was diagnosed with chronic myelogenous leukemia. Although she had no symptoms, a blood test was odd enough for her doctor to send her for a bone-marrow biopsy.

"It was a shock. There was no cancer in my family. I was 46 and always very healthy. It was pretty upsetting," she said recently. She was advised that without a bone-marrow transplant, she'd have three to five years to live.

That was in 1991.

Rinsky spent the first year seeking a bone-marrow match but was unsuccessful because of an odd antigen that she had inherited from her mother.

Without the transplant, doctors had little to offer in terms of treatment. She started on Interferon, which she described as "a horrid drug," which led to bone and joint pain, migraines and "a tiredness that sleep doesn't help."

From the start, Rinsky was as open as she could be about her health with her three children, who were 10, 13 and 14. And she powered on, doing what she'd been doing before.

"I was still room parent, team parent. I was PTA president. I tried to give them as normal a life as we could," she said.

"I don't know if stubbornness helps or outlook. I didn't want my children to remember me as some unhappy, bitter invalid and their childhood all screwed up."

While Rinsky was continuing to live her life, doing what she wanted to do, her husband kept asking what she hadn't done and where she'd like to go. An avid cook, she mentioned that she'd always wanted to do a Cordon Bleu cooking course. So he whisked her off to London for a week.

And her son was an avid fan of Phantom of the Opera, which was only playing in New York at the time.

"It was kind of an extravagance to take a 10-year-old to Broadway," she said. But they treasured the experience.

All the while, Rinsky held on to the hope that she would defy the odds.

"When they told me the statistics, I just said, 'These are statistics. There's no reason to assume I'm at the bad end. All I have to do is stay healthy enough till they find a cure or something better,'" she said.

So Rinsky continued her family involvement, travel and volunteer work, including serving on the boards of her synagogue, Congregation Beth Am, and of the local Leukemia and Lymphoma Society. She raised $40,000 for the latter.

And for 16 years she continued to take Interferon, stopping only after researchers developed a more-accurate blood test, a vast improvement on the quarterly bone-marrow biopsies she'd endured. Over the years she had developed neuropathy, a sort of numbness of the feet, that she feared would ultimately put her in a wheelchair. Although she's been off the Interferon for several years, she still has the neuropathy but it hasn't gotten worse.

After living with a "death sentence" for 20 years, Rinsky has had to adjust her thinking to accept her illness as chronic, not fatal.

"When I was diagnosed, I worried that I wouldn't be around for any high school graduations, much less other significant events in my children's lives," she said. But she's seen her kids well beyond graduations to marriages and parenthood.

"It's like God knew I needed to hang around to plan weddings, holiday celebrations and be a grandparent!"

Ellie Guardino was dressing for a women's cancer-center gala in 2008, checking in the mirror that no straps were showing in back, when she spotted a small mole that she thought had changed.

The fair-skinned Guardino, a breast-cancer specialist on the Stanford Medical School faculty, went every six to 12 months for skin checks. But in just a few months that mole had evolved to Stage 3 melanoma — meaning her lymph nodes were involved and there was a high likelihood of the cancer having spread.

Guardino was 43, married to a cardiologist and the mother of children aged 5, 8 and 10. Suddenly she was confronted with the possibility that she might not see them grow up.

Guardino, who earned an M.D./Ph.D. from Georgetown University, had earlier studied in Southern California with Dr. Don Morton, who had pioneered sentinel lymph-node screening. He performed her surgery, removing 31 additional nodes, and leaving her with drains in her back and under arm for nine weeks.

"I spent a lot of time with my husband trying to decide what to do next with my own health and with my life," she said.

At first, she thought she'd have to make major changes to her life. But she reflected upon what she had accomplished in her life, the many patients she had cared for and the research she'd done.

"I don't think I could ever change my work. This is who I am. I'm not going to be happy doing something that isn't that passionate and important to me, to make this world a better place."

The first year, Guardino went through treatment — first surgery, followed by a year of Interferon. She echoes Rinsky's experience with the drug: "It was like having the worst flu you can imagine every day for a year."

And for someone who hadn't let a day go by without exercising, Guardino struggled to walk up a flight of stairs.

"It was amazing how hard it was on my body," she said.

But she managed to do treatments on Monday, Wednesday and Friday and still recover enough to see patients on Tuesday and Thursday — with occasional absences.

"What was remarkable, not only did I maintain my practice, my patients were committed to being there.

"These women were amazing. I had been there for them during their treatment; they also wanted to be there for me."

During that year, Guardino's work was "a godsend. I don't think I could have made it through a year of treatment if I didn't have that purpose, that drive and that passion and that support. By helping others you're helping yourself."

With support from family and her larger community, mainly at St. Raymond's Parish and St. Joseph's School where her kids attend, Guardino survived the hellish treatment year — learning a lot along the way about patient care and the value of support.

"Until you've gone through those things yourself you can't fully understand. Now the kind of advice I can give to my patients is remarkable," she said.

"There's no question that the psychological aspect was incredibly challenging," she said. Once recovered, she thought a lot about the importance of having better treatments.

"You realize how horrible the experience is to try to do everything to save your life. There's still a significant risk that this disease will come back. ... We need better drugs and less toxic drugs," she said.

Guardino now is limiting patient care and spending most of her energy doing global research at Genentech, working with the FDA to develop new treatments for breast cancer.

"You'd think I would work on melanoma, but there's lots of people working on melanoma.

"Breast cancer is a passion. ... I can do a lot of good for this other disease that I've been passionate about for a long time."

Her Genentech project concerns chemotherapy that is directed straight at the tumor.

"I was excited about an opportunity to work on something that I think will be important not only for breast cancer but all kinds of cancer, a new treatment approach that doesn't have as many side effects."

She's also developing a website (www.breastcancerbasics.org) that offers information for breast-cancer patients to become better advocates for themselves. She has seen patients who "might not have had the kind of excellence in care that they get in an academic center like ours," who don't have access to key information about treatment options.

Her bout with cancer has made her bolder, Guardino said.

"I've always been a strong person, but even more I'm more likely to speak my mind and not feel scared to take things head on, in all aspects of my life, and also try to empower other women to do the same," she said.

The possibility of recurrence, or metastasis, of melanoma is a constant presence in Guardino's life. When it recurs, she said, it's usually as lung or brain cancer. She has interval scans — PET, CAT, MRI — done along with blood work and checks in with her oncologist regularly.

"I call myself a 'limited Stage 3.' If you look at all comers for Stage 3, the five-year survival is about 50 percent. ... I'm always the optimist that I'll be in the more favorable category."

But even feisty Guardino sometimes succumbs to mild panic. One week she had a headache that lasted five days. She was going to call her doctor after a week.

Still, she said, "You can't live in fear. You have to live every day and be with your family, love your family, take that trip."

Associate Editor Carol Blitzer can be e-mailed at cblitzer@paweekly.com.

Comments

Posted by Star Teachout, a resident of Barron Park
on Jan 21, 2011 at 11:03 am

Much thanks for this article.There are so many different survival stories--many of which don't involve attacks on our bodies, but on our spirits and attitudes. It is always a joy to meet or hear of people who have become clear and taken their lives to a higher purpose. Our goals as the "bystanders" is to infuse our own lives with their inspiration. A wonderful topic for our news...


Posted by Steven Kunes, a resident of Old Palo Alto
on Jan 21, 2011 at 11:47 am

What a wonderful article and an inspiration to us all! We should live each day as if it's our last and with one (and ONLY one) goal in mind: What can we do to help our fellow human being?


Posted by local gurl, a resident of Greenmeadow
on Jan 21, 2011 at 1:06 pm

I had a near death experience at 16 and it absolutely changed my life. It is truly amazing to be watching your body on the ground as if you were a spectator in the crowd and suddenly realize that it is YOU!


Posted by marlene, a resident of Greendell/Walnut Grove
on Jan 21, 2011 at 2:31 pm

Dr Guordino was my oncologist at Stanford before she left for Genentech. She was a truly amazing, caring doctor for me and I had no idea what she was going through with her treatments.

It is a privilege to know her.


Posted by Moi, a resident of Another Palo Alto neighborhood
on Jan 23, 2011 at 3:55 am

Lessons for all.
But I'd say a headache that lasts over two days warrants a call to one's physician.


Posted by stanford, a resident of Duveneck/St. Francis
on Jan 24, 2011 at 10:44 am

I just wanted to say what a moving article, and very well written. The four people you profiled are heroes. The fact that they didn't let their experiences change them for the worst, they fought fear and worries and made it through better people - not that they were not before. I am so moved by their stories. I will spend some time thinking about my own life. I wish them all them very best for a happy and long life.


Posted by Survivor, a resident of Another Palo Alto neighborhood
on Jan 24, 2011 at 10:41 pm

Kudos to the Palo Alto online for bringing these stories to our attention. I, too, had Dr. Guardino as my oncologist at Stanford and was inspired every day by her attitude and optimism. I'm alive and strong at almost 2 years post-diagnosis thanks to her.


Posted by learned, a resident of Meadow Park
on Jan 26, 2011 at 2:58 pm

if anyone doesent like you, you still have the right to fdight for your life. no person no aythority ,no police person has right to harass you if you know you did nothing wrong. you have right to fight to death ,anyone who harms you brcause of race religion or any thing that makes you a target.


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