A breast cancer survivor's interview: To wring their perfectly coiffed head

Question by Karen Weintraub: You talk about getting a lot of strength from other people going through treatment, people you met in hospital waiting rooms and elsewhere.

Answer by Kelley Tuthill: For me, that was a constant theme of being sick. There was always somebody who was dealing with something far more challenging than I was facing. You say, if they can face this, I certainly can do this.

Q. Was it challenging to be so public about your disease?

A. It was an incredibly positive experience to go out in Boston and have people say - even today - "how are you doing?" The flip side is some pain that the public feels, they share with me, and that's difficult, too. By going public, I've had opportunities to try to do something about [my frustration with the lack of a cure]. My coping mechanism is to try to help.

Q. Do you have any advice for people whose friends or loved ones are going through treatment now - things they shouldn't say to cancer patients?

A. That "you have the perfect head for being bald." If one more person told me that, I was going to wring their perfectly coiffed head! People mean well, but you go: Really? Really? I don't think so.

Q. People with life-threatening diseases often talk about how the challenge made them stronger. Was that your experience?

A. My life is better than it was five years ago, hands down. I appreciate life more. I have so many amazing people in my life now - and that's because of breast cancer.

Read another story about a breast cancer survivor. Thanks to Karen Weintraub for her interview of Kelley Tuthill, excerpted here from the G Section of today's Boston Globe.

Bring a man's shirt: A recovery wear garment for mastectomy patients

Peg Feodoroff's story:
As a result of my and my youngest sister's cancer experiences, we were compelled to start a company that would improve the environment in which people are asked to heal and recover. We designed a Recovery Wear garment that we call the Original Healing Threads. This was our first project and we have many other ideas to further our mission. However, we need to be profitable before we can proceed.

Hospitals cannot afford to purchase our Healing Threads for their patients. We do have 4 hospitals throughout the USA that have forward-thinking decision makers who give our Healing Threads to their mastectomy patients before their surgery. They raise the money to pay for them via the medical institution's philanthropic arm. Wearing our Healing Threads allow women to recover and heal with their dignity and modesty intact. The patented break-away panels allow only the body parts that need to be exposed, to BE exposed. The interior pockets hold post-surgery drainage bulbs discreetly and comfortably. Did you know that the medical community has a common practice of preparing women for breast surgery by suggesting that they bring a MAN'S SHIRT to the hospital for their trip home? Now, your breast or 2 has been removed and now they confirm your feelings of inadequacy as a woman by advising you to bring in a man’s shirt! Not so subliminal a message there! Oh, and then they clip the drainage bulbs to said shirt where they constantly remind you that you no longer have a breast. The Hippocratic Oath states, "First, do no harm," and obviously is taken as an admonition against physical harm. The psychological harm being done is undeniable and endless.

Our garments provide our customers with dignity, modesty, and empowerment. Being able to say "no" to a hospital gown empowers a person to say "no" to other directives: to ask questions; to get 2nd or 3rd opinions; to dialogue with the doc re options, side effects, etc., etc.. To take control and ownership of their own health, their own illness or disease. To bring to the battle the mind, the body and the spirit. Without all 3 working together recovery is not possible.

Yes, you do have a choice, a choice that has won praise from many medical personnel who have worked with patients wearing it. Our Healing Threads are not only attractive, they are supremely functional.

Read a story about hospital gowns. Thanks to Peg Feodoroff, the president of Healing Threads, for the story.

In New York, it was considered very stylish: Hair after chemotherapy

K. Jensen writes:

Dear Diary,
I lost my hair during chemotherapy treatments for breast cancer. When it came back, it grew first on the top of my head and then later filled in on the sides.

In New York, my new crew cut was considered very stylish – for women. People would stop me on the street, compliment me and ask me where I had it done. When another cancer patient also asked me about my "new do," I tried to explain: "It's chemo."

"Kimo?" she said. "He does a great job. Where does he work? What's his number?"

Read another surprising story about chemotherapy’s effect on hair. Thanks to Ms. Jensen, whose diary entry appeared in the Metropolitan Diary in the New York Times of June 17.

To be their own voice: Early detection of breast cancer

Rep. Debbie Wasserman Schultz held a press conference yesterday in a small dining room at the U.S. Capitol building in Washington, DC to announce legislation for a national campaign to educate young women and their doctors on the need to start early on breast cancer detection. Her bill, the EARLY Act ("Education and Awareness Requires Learning Young"), would provide $9 million annually. She says it "would encourage young women to be their own voice – to speak up for themselves and know when they need to go to their doctor. The EARLY Act will teach both young women and medical professionals alike about risk factors, warning signs of breast cancer and predictive tools such as genetic testing that can help women make informed decisions about their health."

The glamorous 42-year-old congresswoman had discovered a breast lump through self-examination in December 2007. Since then, she has undergone seven major surgeries. She learned that her Ashkenazi Jewish ancestry places her at greater risk for the cancer to spread, so she chose to have a double mastectomy, and the removal of her ovaries.

She had kept the illness private during her re-election campaign, not wanting the illness to "define" her.

After her press conference, she had another important message to convey: "I'm healthy, and I'm through it."

She had to make some very tough choices. Maybe her most heroic choice was to go public and to sponsor legislation to protect other young women. That's why she's a patient advocate hero.

Advice: Like her, help others who face the difficult healthcare choices that you've had to confront.

Read another story of a vigorous and imaginative breast cancer survivor. Thanks to Richard Leiby for the source story in today's Washington Post.

I knew I had to live: A pregnant breast cancer survivor

Patty Murray, an attorney in Buffalo, was 35, very healthy and pregnant with her third child. Nearing the 17th week of her pregnancy, she noticed a lump under her arm.

An ultrasound exam revealed that she had aggressive breast cancer, which had spread to her lymph nodes. At that time, in 1995, little was known about cancer treatment of pregnant women, but her oncologist told her the chemo would have no effect on her fetus; if anything, the baby would be born without hair.

Surprisingly, according to a Norwegian study of 45,000 women diagnosed with cancer, pregnancy does not affect survival rates. Some women say that being pregnant increases their will to survive. "The baby inside me created a necessity for living," she said. "Whenever I felt him moving around, I knew that I had to live."

Ten long seconds after her baby boy was born, she heard him cry. "It was the most wonderful sound I ever heard," she said. The doctors brought him over, and unlike her first two children at birth, he had a full head of hair.

Twelve years later, in 1997 Patty founded Hope for Two…the Pregnant with Cancer Network. Its mission is to connect cancer patients.

Advice: Live like Patty, who created an organization to help people overcome what she overcame.

Thanks to Pamela Paul for the source article in the New York Times Magazine of August 31.

We did this to change thousands: A breast cancer survivor

During her treatment for breast cancer, Kim Carlos, 36, ate lunch once a week at the Nordstrom department store in Kansas City, Missouri, with three other young women with breast cancer. They wrote a book based on their discussions, "Nordie's at Noon," and published it themselves. Their grass-roots marketing was so successful that Da Capo Press bought the book and is redistributing it.

Kim's work brought her so many requests for speaking and advocacy work that she decided to leave her position at a law firm in Kansas City to dedicate herself to motivational speaking and issues-oriented public relations.

"We didn’t go through this to change one life, we did this to change thousands," she said.

Advice: Share your survival stories, your pain and your joy, with your support group of friends, like Kim.

Read another breast cancer survivor story, or read the source article by Marci Alboher in the Oct. 25 issue of the New York Times.

I was telling everyone to "feel their boobies": a breast cancer survivor

Leigh Hurst, 37, said she never intended to start a business when her cancer was diagnosed in 2004. She just wanted to spread the word among her friends and other young women that they needed to be serious about breast self-examination. "Basically, I was telling everyone I met to 'feel their boobies,' and when I walked with a group of friends in the Avon breast cancer walk in New York, I set up a one-page web site, put 'Feel your Boobies' on our T-shirts and printed an extra hundred to sell," she said. She sold all the T-shirts within minutes, and donated the proceeds to Komen for the Cure.

Her group was filmed by the Today TV show, and when she returned home to Harrisburg, Pennsylvania, she started filling orders that were coming in through the web site.

After much thought, she decided her company should be a nonprofit, to raise awareness and encourage breast self-exams. She put her parents to work in her house, filling orders and handling customer service, and quit her job.

Advice: Find a way to raise others' awareness to prevent them from getting your disease, and help them detect it early, like Leigh.

Read another breast cancer survivor story, or read more from the source article by Marci Alboher in the Oct. 25 issue of the New York Times.

She was well enough to start making plans again: A cancer survivor and entrepreneur

Ms. Banu Ozden is a computer scientist whose cancer was diagnosed in 2001. She said from the time she started dealing with the disease, she wanted to design a system that would make it easier for patients to keep track of their medical costs and also help them find errors in billing and reimbursement records.

In 2005, when teaching computer science at the University of Southern California, she was told that she again had cancer and that this time the disease had spread.

She took a leave of absence from her job and moved to New York so she could be treated at Memorial Sloan-Kettering Cancer Center. Within a month of her diagnosis, she was feeling well enough to start making plans again.

Once again in the morass of medical bills, she knew she wanted to proceed with her company. She started Smart Medical Consumer with her own funds and investments from friends and family.

Advice: See if you can help those struggling with a disease you have learned how to face, as Banu is doing.

Read one of our cancer survivor entrepreneur stories, or read more from the NY Times article on October 25 by Marci Alboher.

It’s just middle-aged white guys making them, not the customer: Compression sleeves for lymphedema

Rachel Troxell, 37, learned she had breast cancer three years ago. After going through surgery, chemotherapy and radiation, she said the hardest part was learning that she had lymphedema, a condition that affects a sizable number of breast cancer survivors and cause their limbs to swell with fluid. "With the cancer, there was a clear path to follow, and I knew there was an end to it," she said. "With lymphedema, you are stuck with it, and it affects the quality of your life."

Her treatment for lymphedema required her to wear a compression sleeve constantly, leading to questions from everyone she encountered. Rachel, a videographer and graphic designer, said she became consumed with finding an alternative to the drab, unsightly and uncomfortable sleeve.

"I called some companies that made the ugly garment, asking if there were other options, and they all said no," she said. "It is just middle-aged white guys making them, and they aren’t the customer."

She connected with Kristin Dudley, who was then a 22-year=old fashion student at Drexel University in Philadelphia. They designed a more fashionable and comfortable compression sleeve. Kristin was excited about it because her own grandmother, who had lymphedema, had refused to wear her own compression sleeves.

Rachel and Kristin won third place for the idea in a business plan contest sponsored by Drexel University. They are now partners in Lymphedivas, since starting the company last year.

Their business owes its inspiration to the brush with breast cancer.

Survival rates have increased markedly, so there are now 2.3 million breast cancer survivors in the U.S., according to the Susan G. Komen for the Cure, one of the largest breast cancer research and advocacy organizations. Many survivors are committed to doing something to ease the ordeal of others or to solve a particular problem they encountered in their own treatment.

Advice to those with a serious health condition: Perhaps, like Rachel, you can find innovative ways to help others who suffer from the same health condition you do.

Read another of our entrepreneur stories, or read Marci Alboher's source story in today’s New York Times.