After Mesothelioma: How My Village Helped Save My Life

Heather von St. James' story:

After the birth of my daughter Lily on August 4, 2005, I came to realize the meaning of the saying, “it takes a village.” Our village consisted of my parents, my in-laws and a multitude of friends. I had experienced a pretty easy pregnancy and after the birth everything was going well. Unfortunately, things were not going to stay that way.


A month after returning to work, I began feeling tired and out of breath. It would have been easy just to chalk it up to having a newborn, but I felt something was wrong. I went to my doctor who ran several tests on me before finding out the reason for my symptoms. It turns out I had malignant pleural mesothelioma, which is a cancer that affects the lining of the lung. Apparently it was caused by unknowing asbestos exposure as a child.

I was told that if I didn’t undergo any treatment I had about fifteen months left to live. My first worries were about Lily and how she and my husband would cope if I wasn’t around. These fears led me to choosing one of the most drastic mesothelioma treatment options available. On February 2, 2006, I had my left lung removed in a Boston hospital. It took 18 days of recovery in the hospital and then an additional two months recovery before my body was strong enough to begin chemotherapy, followed by radiation. Remember, through all of this I was still a first time mom with a new baby.

All of this would have been impossible if not for the village that supported us. It was interesting to see who was part of our village. People we thought we could count on disappeared and some we didn’t expect to help rose to the challenge.

During our stay in Boston, Lily stayed with my parents in South Dakota who went from being grandparents to being primary caregivers. Fortunately, they also had their own village supporting them. Girls that I babysat in my youth became babysitters for my girl while my parents went to work. Church members provided much needed love and support. Meanwhile in Boston, we met new friends who were going through the same experience were and we felt their love and support for us.

It was hard to be away from Lily as she was experiencing childhood firsts.  All I had was pictures my mom sent.  My husband printed grainy black and white copies of these milestones off a community hospital printer. Through all this, I keep the thought forefront in my mind that my daughter was the reason I was away from her and fighting for my life.

My message to everyone else is to embrace whatever challenges life gives you. Even with all I went through, I am thankful for what I experienced.  My favorite quote is, “Life is a banquet and most poor suckers are starving to death.” Embrace your life for all it is worth.

Thanks to Heather for sharing her story.  Read another story about a cancer survivor, and see Heather von St. James' blog.

Face Forward: Still, I had to persist

Michele Howe Clarke’s story:
My journey was one from living in a wonderful myth of perfection, as an investment banker, mother of a six-year-old girl, with a husband, living the high life. Then it was shattered like Humpty Dumpty, by an aggressive head and neck cancer. It was a total surprise. I had this pain behind my ear, and went to the dentist. He couldn’t see it, and thought there was nothing there, so he just told me, “Some people just live with pain.”

I got pregnant, and had my daughter. Then the pain became intense. I persisted in saying, “Something’s up here.” Finally, my dentist said to see a head and neck specialist, and I did. Still, I had to persist with him too, telling him something was there, though he couldn’t see or feel anything: “No, really! There’s something going on.”

I had a needle biopsy, and was told to have a happy Christmas, as there was no way I had cancer. It was a series of unfortunate events, as it was such an unusual cancer, not in the forefront of people’s minds: adenoid cystic carcinoma of my salivary gland, so the pain was reflecting in my dental area.

I went in for an operation, and they found it was a cancerous malignancy growing into the facial nerve. I had to sacrific all the facial nerves on my right side just for a chance to live. The statistics said I wouldn’t have very long.

The surgeon came in and laid a hand on my calf with family there, and said, “I’d understand if you’d choose death instead of disfigurement.” I felt an innate resource surge in me, as I wanted to dance more with this life.

I knew I’d get on the team of playing to live. Here’s an important lesson: My surgeon told me to choose death. Then when I went into his office after the operation, with a shunt, staples, and sutures in me, I had questions. But he didn’t have time for questions; it was very adversarial. Then he handed me a scrip for a whole vat of oxycontin pills, more than 300 of them. It’s like he was saying, “This is gonna suck, so go get numb.”

This was very unusual for me, but I owned my authentic No. I said he is NOT the doctor for me. I changed course in the middle of the head and neck diagnosis. I want to shout out to everyone going through a serious disease: It’s so important that you speak up if it doesn’t feel right. You are the key person in the medical team, A1, so ask what you need. If you don’t, no one can help you. If it doesn’t feel right, ask for alternatives.

For two weeks, I asked anyone I knew for a good head and neck surgeon in New York. I landed with Dr. Peter Costantino, because his team welcomes you in as if you are a person with a future, with life for you yet. He told me, “Honey, I want to get you to your daughter’s wedding.” [Sage was six years old.] I was spoken to in the language of hope, which we all deserve. These are the things we’re allowed to ask for. You can change course if you know there’s a better way for you. For you. There are other alternatives in the medical system, since for every doctor you have, there are 100 more.

My daughter is eight and a half now.

Then I had a baby boy, almost two years old now. I trusted my body, and had a wonderful healthy son! It’s OK to make decisions for yourself.

Early on in my cancer I was told something really important about the statistics: You are not an average, not a statistic; you’re an individual with a 0% or 100% chance. You’re on the field alone, with no one to compare yourself to. There’s no way to measure an average as an individual. The average isn’t true; what’s true is what you say about you.

You can live until you die no matter what you’re facing, or you can just live until you die.

See Michele Howe Clarke's book, Face Forward: Meeting Challenges Head on in Times of Trouble.  Thanks to Linda Smith of the Ascot Media Group for arranging the interview. 

If that little girl in the picture can do it: Forgiveness after a severe wartime burn

Perhaps the most unforgettable Vietnam-era photograph shows a screaming, naked nine-year-old girl, afire and fleeing from a napalm attack. She is now a grown woman.

Kim Phuc's story of her long road to forgiveness:

On June 8, 1972, I ran out from Cao Dai temple in my village, Trang Bang, South Vietnam; I saw an airplane getting lower and then four bombs falling down. I saw fire everywhere around me. Then I saw the fire over my body, especially on my left arm. My clothes had been burned off by fire.

I was nine years old but I still remember my thoughts at that moment: I would be ugly and people would treat me in a different way. My picture was taken in that moment on Road No. 1 from Saigon to Phnom Penh. After a soldier gave me some drink and poured water over my body, I lost my consciousness.

Several days after, I realized that I was in the hospital, where I spent 14 months and had 17 operations.

It was a very difficult time for me when I went home from the hospital. Our house was destroyed; we lost everything and we just survived day by day.

Although I suffered from pain, itching and headaches all the time, the long hospital stay made me dream to become a doctor. But my studies were cut short by the local government. They wanted me as a symbol of the state. I could not go to school anymore.
The anger inside me was like a hatred as high as a mountain. I hated my life. I hated all people who were normal because I was not normal. I really wanted to die many times.

I spent my daytime in the library to read a lot of religious books to find a purpose for my life. One of the books that I read was the Holy Bible.

In Christmas 1982, I accepted Jesus Christ as my personal savior. It was an amazing turning point in my life. God helped me to learn to forgive — the most difficult of all lessons. It didn't happen in a day and it wasn't easy. But I finally got it.
Forgiveness made me free from hatred. I still have many scars on my body and severe pain most days but my heart is cleansed.

Napalm is very powerful but faith, forgiveness and love are much more powerful. We would not have war at all if everyone could learn how to live with true love, hope and forgiveness.

If that little girl in the picture can do it, ask yourself: Can you?


Kim Phuc has started a foundation, Kim Foundation International, which aids children who are war victims. She is a patient advocate hero.

Advice: Live like Kim Phuc.

Read a story about the ways faith and prayer help healing.

Thanks to Anne Penman of the Canadian Broadcasting Corporation for the source story, rebroadcast today on National Public Radio.

The day after my operation, my work in patient advocacy began: A prostate and kidney cancer survivor

Winston Dyer's story:

On May 17, 1995, I underwent a radical prostatectomy to remove my prostate gland at Long Island College Hospital in New York City. The next day, my work in patient advocacy began from my hospital bed with my first radio interview. My friend, who is a host on a Caribbean radio show, called me while I was in the hospital to see how I was doing. While we were on the phone, we decided to go on the air and answer questions from listeners about prostate cancer and promote awareness of the disease. I quickly became the go-to guy for Caribbean men all over the city who are experiencing prostate problems.

Now I'm a 12-year prostate cancer survivor and a six-year kidney cancer survivor. I'm the founder and chairman of Arianna Prostate Cancer Community Outreach.

There isn't a rule book on how to be a patient advocate. Each case is different, so there's no set pattern to follow. One kind of patient advocate is someone who offers assistance to patients to improve their care and quality of life. It means being there for people and supporting them in the best way you can. As you begin this work, you'll learn how to best advocate for others.

Winston's Advice: Your advocacy has to come from your heart.

1. Take advantage of every opportunity. When someone asks you to talk about your experience with cancer, take that chance to raise awareness or help a patient. For instance, three months after my surgery, my urologist, Ivan Grunberger, asked me to speak to a newly diagnosed prostate cancer patient. I visited his house, where I met his wife and answered many questions the couple had about the disease and life after prostate cancer.

2. Make yourself available. Accompany patients to their first doctor visits. As a survivor, you can help explain what the doctor is saying and even ask questions the patient may be afraid to ask.

3. Be patient and understanding. A person who is scared by a recent diagnosis may ask you many questions, at all hours of the night. If possible, you may want to have a separate telephone number for your advocacy work.

4. Help dispel myths. Some patients may have misconceptions about cancer and its treatment. Provide them with information to help separate fact from fiction. Also, encourage participation in clinical trials, which may afford patients greater access to state-of-the-art therapies.

5. Network and make connections. The relationships you build with medical experts will benefit you when you’re helping patients. Get to know the physicians in well-known institutions. Pick their brains and ask them to go over a case history. It's also important to create warm relationships with the staff in a hospital's financial aid office. You’ll need them when representing the poor and uninsured.

6. Get involved in support and advocacy organizations. This is a must for those of us who are interested in advocacy. You'll be a better patient advocate by volunteering in a leadership capacity in a support group or other organization. I worked at CaPCURE for several years, which is an organization that funds prostate cancer research; it's known today as the Prostate Cancer Foundation.

Read another of our cancer survivor stories.

Thanks to our source, Kathy Meade of the Prostate Cancer Advocacy and Action blog.

Attaboys from his teammates: Jon Lester’s Win over lymphoma

After six chemotherapy treatments over the winter, he was declared free of the anaplastic large cell lymphoma that had interrupted his solidly successful rookie season as a pitcher with the Boston Red Sox.

The Red Sox had gone slowly in bringing back Jon Lester, waiting until last night to give him the ball. In the sober words of the New York Times journalist Bill Finley, "he made a dramatic and effective return….[H]is ability to get outs has apparently not been diminished by his battle with cancer."

At the beginning of the game he received a warm round of applause from fans of both the Cleveland Indians and Red Sox. His teammates gave him good run support, scoring four times in the first inning.

Six innings later, he was pulled from the game, ahead, 5 – 2. He got slaps on the back and attaboys from his teammates. The Red Sox fans in the Cleveland stadium cheered, and Manager Tony Francona congratulated him.

Lester was supportive to others, wearing a red wristband in support of the Lester Project, an offshoot of another cancer charity, the Jimmy Fund.

Advice to cancer patients: Get a group of supporters who are as fanatic as Red Sox Nation.

Read another of our cancer survivor stories, or read the source stories by Nick Cafardo, Amalie Benjamin, and Bill Finley in the Sports sections of today’s Boston Globe and New York Times.

When you hear a bad prognosis: Dire diagnoses

Jessie Gruman knows all too well what it’s like to hear bad health news: first at age 20 with a diagnosis of Hodgkin’s Disease, ten years later with cervical cancer, five years ago with a potentially fatal infection of the heart’s lining (viral pericarditis), and three years ago with colon cancer.

Based on her hard-won lessons on survival, she has written Aftershock: What to Do when the Doctor Gives You – or Someone You Love – a Devastating Diagnosis.

Advice to newly diagnosed people: Read her book.

Read one of our survivor stories, or read more from Jane Brody’s column in the New York Times on July 3.

I owe my life: Recovery from alcohol use

Heather's story

I have been documenting my life lately but not here. I miss it. I owe my LIFE! to 43things.com. The support I have gained here has been incomparable to anything in my history. It put me in the place I needed to be. I need to revisit more often to give support to all the others in the early stages of getting where I’m at now. Thank you 43things.com. I am no longer an alcoholic, I have lost more than 40 pounds, I have learned to set goals and follow them through! I am LIVING and all I needed the whole time was a little support. Thanks to ‘make new friends’ I have my own support network these days and HONESTLY I couldn’t have pulled myself out of the darkness I was in if not for help.

xoxo,
Heather Rae Hatton

Advice to those struggling against dependence: Find a welcoming support group.

Read another of our drug dependence stories, or read Heather’s source blog post.