Advocates everywhere at SABCS

BY KATHY LATOUR | DECEMBER 12, 2009

I am always sad to leave SABCS because it's been a time to reconnect with the amazing men and women who work full time, mostly as volunteers, advocating for breast cancer and the women and men who are diagnosed with the disease.

Advocacy is one of those words that can be scary if you don't know what it means because it sounds like something that requires a PhD, but advocates come with all levels of education. What they have that others don't is amazing passion to help after having been through it themselves, or to honor someone they love.

Passion is an amazing thing to watch. It's what prompted Nancy Brinker to create Susan G. Komen for the Cure to honor her sister, Susan Komen, who died of breast cancer. Now Komen is the largest funder of breast cancer research outside the government. It's what prompted the creation of Breast Cancer Action, the Young Survival Coalition, and literally hundreds of other groups locally and nationally.

Every advocate and advocacy organization has its own focus, and, believe me, with breast cancer, there will never be enough advocates to cover every aspect of this disease. For example, this week I have highlighted seven of the 186 advocates in San Antonio this year, each of whom works to bring attention to a different area of breast cancer whether it be policy change, male breast cancer, inflammatory breast cancer, young women with breast cancer, African American women with breast cancer, women with metastatic breast cancer, and many more. Indeed, many of the advocates work in multiple areas because once they tackle one issue, they find that there are 10 more underlying issues that need attention.

There are also those who advocate with whimsy, the approach of Rene Bowditch and Mary Beth Gibson who are co-founders of Beyond Boobs!. The women met at a retreat for survivors in 2006 where Rene was dressed as her alter ego, the Good Health Fairy, the persona she has brought to SABCS and one that gets a lot of attention. The two formed a support group that became a nonprofit whose mission is to educate all women about breast health while offering support for young women who are diagnosed.

Being in the passion of the advocates here is what keeps me coming back year after year to this event, because as tired as I am by the end of the day, when I go to the Alamo Breast Cancer Foundation Hot Topics session every evening, I am renewed by the room full of women and men who have come to learn more so they can go home and advocate for others. Last night I met a young man named Peter, one of 52 men (so far) with breast cancer who lived at Camp Lejeune North Carolina between 1957 and 1985. Peter stands out in this mostly female group and the women have clearly come to adore him. Peter is battling metastatic breast cancer and has been a national advocate for the other men and women stationed at the Marine Corps Base at Camp Lejeune, North Carolina, who were exposed to contaminated drinking water from 1957 until 1987.

Peter sits with the other advocates as they listen to a panel of doctors who clarify, and simplify, the day's lectures to hit on the high points (this is also a favorite spot for those who are not medically trained to come and get some effective translation of medical to real life).

On Sunday the advocates will head to their homes to take what they have learned to their own communities -- and to be there for the next wave of advocates who will hear the words you have breast cancer this year.

Do you understand your diagnosis?

BY KATHY LATOUR | NOVEMBER 3, 2009

In the upcoming Winter issue of CURE we have a story on health literacy. As most of you who have been there know, this phrase does not relate to how many people who are diagnosed with cancer can read and write. The day I was diagnosed it didn't matter that I had a master's in communication because I heard very little after the words you have cancer. For the piece we interviewed Helen Osborne, M.Ed.OTR/L (which means she is also licensed in occupational therapy). Osborne, the founder and president of Health Literacy Consulting, became interested in health literacy in the mid-'90s and has received awards for her "plain English" writing.

She is also the one who determined that health literacy should have its own month and decided it should be October. Osborne consults with lots of folks about how to educate people on health issues, including cancer. In addition to promoting the use of plain language, Osborne speaks on the barriers to understanding health care information. These barriers include the obvious things, such as the inability to read or write or a disability such as dementia. But she also addresses another barrier that we don't consider that often – the emotional impact of information. This points to one of the most ignored aspects of health literacy--emotions and how we often cannot hear when we are trying to figure out the issues of life and death--no matter how much education we have.

Over the years she has written a number of cancer education items for the National Cancer Institute, among them Surgical Options for Early Stage Breast Cancer. She laughs about how, a year later, when she was diagnosed with early-stage breast cancer, she had no clue what to do. "I literally wrote the book but it made no difference," Osborne says.

That was how I felt the day I heard I had breast cancer. I could paint you a picture of what the room looked like, but I don't remember any of the words. At one point a few years ago, my oncologist and I were asked to do a skit for a meeting of oncology fellows where he read my actual pathology report into a microphone while I listened. When he said something that set off an emotional or mental reaction in me, I would start saying out loud what I was thinking. Of course, he is still telling me important information, but I'm not hearing it because my own internal dialogue is going. The oncology fellows got it in a way that no amount of classroom instruction could – and I have heard from more than one of them that they now know their patients need information repeated before they actually hear it.

This brings up another issue about literacy. Osborne says the only way to guarantee that cancer patients get the information they need is to get to know them and how they communicate. She gave as an example a time when her own oncologist was discussing with her the use of hormonal agents. Osborne concedes that she does not "do" numbers despite being surrounded by a husband and children who are all numbers driven, so when her oncologist started giving statistics on relative risk and absolute risk, Osborne zoned out. "Then she did something so simple. She took her right arm and held it really high and said, 'I see this as your benefit,' "Osborne says. "Then she took her other hand and held it low and said, 'this is possibility of side effects.'" She made it clear and simple to Osborne, who decided to do the drug that she had had misgivings about.

Osborne recalls the reaction of her hospital co-workers when she began talking about health literacy in the mid-'90s, asking if she meant the ability to read. Today, it's an issue on the national agenda. To read and hear stories about the importance of health literacy, go to Osborne's website

Free mammogram -- read on

BY KATHY LATOUR | OCTOBER 7, 2009

It's breast cancer awareness month again, and this week there were two events I attended that reminded me once again how much I hate this disease.

Since it's been 23 years since my bad diagnosis of breast cancer (I had DCIS in 2007 in the other breast), I forget the pain sometimes.

I forget the bald head and the fear and the anger. Then I am blessed with an event in October that reminds me. I say blessed because, as hard as it was to go through breast cancer, I never want to forget what it did to my life and how very much I don't want other women to have to go through it.

That's one reason why I was appalled at one statistic I heard yesterday at the Faces of Breast Cancer event put on by Astra Zeneca here in Dallas. As part of the event there were presentations from the executive director of Susan G. Komen for the Cure Dallas affiliate and Gilda's Club, both of which do remarkable work in our community.

Chris Packard, the executive director of the Komen affiliate in Dallas, told the assembled group that Texas is number 42 out of 50 states in the ranking of the number of women who should get screening mammograms at age 40 and don't.

I was appalled. That means there are only 8 states worse than Texas. How could my Texas sisters be so stupid.

Then I realized that part of the reason has to be that Texas has the largest uninsured population in the country, which is another horrible statistic about the Lone Star State.

Breast cancer can be deadly if left undetected and is very survivable if found early. And a mammogram costs $110 at most reliable places – less when it's subsidized. So let's do something about that. No matter where you are in the country when you read this – but particularly if you are in Texas – send an e-mail to your whole list of friends and remind them that it's breast cancer awareness month, and that if they are over 40 and haven't had a mammogram they may be harboring a very survivable cancer.

In fact, I challenge you to go a step further. If you know a woman who has no insurance, pay for her mammogram.

That's what I am going to do. I will pay for a mammogram for the first uninsured Texas woman over 40 who has not had a mammogram who sends me an e-mail at kathyl@curetoday.com.

If you want to pledge to help a Texas woman get a mammogram, let me know and I'll send you number 2, 3, 4 . . .

We are our sister's keepers.

Healing through art

BY KATHY LATOUR | SEPTEMBER 14, 2009

Art can do amazing things to help us understand ourselves and the world around us, including healing from cancer.

I met with an old friend and fellow breast cancer survivor and a group of her artist friends last week to talk about using art to help women heal from cancer. Diane Hosey, who I had interviewed in the early '90s for my book The Breast Cancer Companion, was diagnosed in 1987 at 31 with stage 3 inflammatory breast cancer, a year after I was diagnosed.

In 2007 she decided to celebrate being alive by diving again into the abyss of breast cancer to more fully understand what had happened to her. As a very artsy woman and business consultant, Diane asked an artist friend named Karen Blessen (who was the first graphic artist to win a Pulitzer Prize, by the way) to interpret her experience through art. Blessen, a journalist and graphic artist, was the perfect person for the job, having founded the nonprofit Today Marks the Beginning, whose mission is to use art to impact public awareness of social issues.

The resulting story and art created by Blessen appeared in the Dallas Morning News and was so powerful for Diane that she wants to explore how the same process might be used for other women who have survived cancer to gain new understanding of their experience as they heal. It was a dynamic discussion, with the six women gathered around the table bringing insight and excitement of their own remarkable lives to how such a project would work. How do you find the right match of survivor and artist? What would the resulting presentation look like? Is it a gallery show or performance art or both?

It's an exciting idea and I want to know what you think. Would you work with an artist to interpret your cancer to better understand what has happened to you? Would you revel in the possibility of finding new territory? What kind of presentation would you like to see whether you took part or not?

I am intrigued by the possibilities because in 1996 I created a piece of art that helped me understand the power of artistically interpreting my own experience. I had compared my feelings after breast cancer to being shattered and then having to put myself back together again--using that analogy when I spoke about one of the positives of cancer. Positive? Yes, because when you put yourself back together you can add things that weren't there before. I actually put a piece of pottery, by a well-known potter named Mary Whitkop, back together that broke the year after receiving it from a gallery in Taos, New Mexico. I reassembled the pot adding things as I went: the pink rhinestone ribbon, the crystals of an old necklace that belonged to my mother, beads chosen by my daughter to represent her, a symbol of Southern Methodist University where I was welcomed to teach while going through chemotherapy.

As I finished assembling the pot, I saw that one piece was still missing, probably because it was clearly the point where the pot had hit the floor and the pieces were too small to save.

How ironic that my pot would be missing a piece. I filled the hole with beads that I had collected over the years, making it the most beautiful part of the pot. Like me, the pot had lost part of its original symmetry, which had been replaced with something bright and beautiful.

The cancer community will miss you Teddy

BY KATHY LATOUR | SEPTEMBER 1, 2009

Reams have been written in the past week about the death of Ted Kennedy, but little has focused on how important he has been to the cancer community.

From the beginning of discussions on the need to address cancer in the early '70s, Ted Kennedy has been there pushing for research dollars and understanding. This was before he became a survivor himself when his son Edward was diagnosed with a rare bone cancer that resulted in the loss of his leg while a teen.

Then in 2002, his daughter Kara, 42 and the mother of two, was diagnosed with lung cancer, and again he was faced with the same challenges as any parent of a child with cancer. It's true that he had the resources and visibility to find and engage the best, but I choose to see him as a model for many who have learned how to demand the best medicine for themselves and their loved ones -- and to never, never, never give up.

Over the years, Kennedy sponsored and co-sponsored numerous bills that have helped fund cancer research and provide better care for prevention and treatment. In addition to co-sponsoring the Mammography Quality Standard Act in 1992 to set standards of safety and accuracy for mammography, he sponsored the National Institutes of Health Revitalization Act of 1993.

In March 2009, he and Senator Kay Bailey Hutchison introduced the 21st Century Cancer Access to Life Saving Early Detection, Research and Treatment (ALERT) Act. At that time Kennedy was already desperately ill with the brain tumor that would take his life.

It's been interesting to see the responses to people who want to list all his transgressions as a younger, less mature person, some of which were horrific lapses in judgment for which he continued to be held accountable until his death.

But what I see is a man whose efforts to make right those wrongs served many of us in the cancer community beyond well. I only hope in my own life to make up for stupid, young decisions in such a wise way.

No matter how you view Kennedy, his death and that of his sister Eunice a month before marked the end of an era for those of us whose youth, and for some our very direction in life, was defined by a Kennedy.

Alternative cures for cancer and knowing The Secret

BY KATHY LATOUR | AUGUST 17, 2009

I got another one of those e-mails to buy a "secrets to beating cancer" book in my mailbox this week. You know the ones. They list all the miraculous things that happen to your body when you do what they have so carefully detailed in the book, which is yours for only $19.99.

It's been a while since I have bitten on one of these, but I can remember actually looking into a few of them a number of years ago when my diagnosis was a little newer, and e-mail became a way to market. Because, who doesn't want to know "the secret" to healing cancer and getting well? What each book usually had was a kernel of truth about something important that was surrounded by lots of marketing. Of course, the secret is that there is no secret. In fact, the more I read about preventing cancer and being healthy during and after cancer, the more I know that what we need to do has been clearly identified -- we just need to do it. To find out what it is, read on--and it's free.

I was reminded of this a few weeks ago when I interviewed Otis Brawley, MD, Chief Medical Officer at the American Cancer Society, at a meeting on disparities in cancer treatment in Las Vegas. Brawley, who is African American, spoke to the assembled physicians from the National Medical Association, the country's largest association of minority physicians, about health issues for African Americans. The message was clear. It's not about biological differences in race; it's about equal access to treatment whether the patient is poor, black, or rural.

Then he focused on lifestyle and the connection to cancer. Brawley said he is incredibly affected by the data that shows that in 1969, 12 percent of black women were obese, while in 2005, it was 40 percent.

I don't know what the percentages are for white women, but I am guessing they are similar.

In an interview afterward he told me that he believes obesity is almost as bad as tobacco when it comes to causing cancer.

At the end of the interview, I was struck by the fact that we have been getting the same information for years. Obesity, diet, lack of exercise, and tobacco are linked to cancer,getting cancer and maybe even having a recurrence of cancer once treated.

So why is it still the secret cure or quick fix that we want? It's hard to change the way we eat to manage our weight; it's hard to make time for exercise; and it's hard to stop smoking when we now know it's more addictive than cocaine.

But it's never too late to start. So I am. The past month was filled with motivating moments for me, beginning with my 60th birthday and followed by Dr. Brawley's logical assessment to use what we know. Then my daughter Kirtley, who will be 24 in a few months, told me she has begun the KPBP, the Kirtley Perkins Betterment Project, which includes taking care of her body and her soul with specific things to do for her physical, social, and emotional self.

Kirtley has grown up as the daughter of a breast cancer survivor and granddaughter to my mom, who died of breast cancer. I don't know if her cancer risk had anything to do with the KPBP, but I hope so.

So, I am beginning the KLLL plan (I like alliteration), which stands for the Kathy LaTour Leaping Lizards plan, as in leaping into the next part of my life.

First, I am going to take off the 30 pounds that has slowly crept onto my frame since my diagnosis 23 years ago. I am working not only with my internist, who is also a survivor, but also my holistic chiropractor who has gotten me off sugar and onto some great food-based supplements. She sees food as medicine for the body and soul.

Luckily I don't have to stop smoking, but I do have to stop getting those chocolate shakes from Jack-in-the-Box.

Second, I am putting a lap pool in my back yard. I am a total creature of convenience. I know that unless I can exercise easily, I won't do it. And I love to swim.

Third, I am going to ride my motorcycle more and meet up with friends more to take care of my soul. In fact, a number of the breast cancer survivors I have ridden with from all over the world will be joining me in Hill Country next May for a week of riding, hanging, and healing. Come join us if you fit the criteria.

It feels good to make a plan. The Japanese culture says life begins again at 60. You get to start over. As long as I can skip acne, I am ready to go.

Let me know about your plan, and I'll keep you posted on my progress.

P.S. If you are having trouble leaving a comment here or want to make a personal comment to me, please let me know at kathyl@curetoday.com

The twin towers fall again -- and again -- and again

BY KATHY LATOUR | AUGUST 6, 2009

I just returned from a family pilgrimage to New York City where I took my nephew Daniel to celebrate his graduation from high school. Daniel is the youngest of all the nieces and nephews, so I have now completed my auntie duties in that regard, but with my daughter Kirtley having gone to college in Manhattan and now working there, I don't really need any excuses to visit the Big Apple.

I have always loved New York City and the bustle and energy of the city that never sleeps. I'll never forget the morning when Kirtley, then a sophomore in high school, and I watched the planes hit the World Trade Center from our house in Dallas.

We felt, as did all Americans, the personal assault of that morning and the days to come as the city reeled while reclaiming its dead and injured.

I have never wanted to see ground zero on my many trips to New York. It just feels too painful. But on this trip I couldn't avoid it when a cab ride took us past the site enroute to the southern end of the island. In addition to the sadness this brought up, it also made me angry, because in the ensuing years since the towers fell I have come to see them as a symbol of a very different kind of death and destruction.

We lost 3,000 people the day the towers fell, a number we lose every two days to cancer in this country. In the four days I spent in New York with my nephew, the towers fell twice in the deaths of men, women and children to cancer. Today and tomorrow the towers will fall again, and then again, and then again.

I in no way want to diminish the loss of life we experienced in the twin towers – what I want is the same kind out outrage at the loss of life to cancer. And the same dollars used to avert it.

I don't even know how many billions we have spent on airport security and homeland security since 9/11. I don't want to. I do know that every time I get screened at the airport, I am reminded that my tax dollars are being spent for people who spend their days looking for water bottles and nail clippers – all while many a person has made a point of their inadequacies by going through with guns and all kinds of sharp objects.

What if we had spent that money on cancer screening?

Every day 1,500 Americans die of cancer – men, women, and children. Until the towers fell I used the image of the Titanic going down every day. Now it's more appropriate to think of the towers falling. It's a devastating image to maintain.

I only wish it made everyone else as angry as it does me.

Jonathan White is a fraud -- and other strange things

BY KATHY LATOUR | JULY 22, 2009

Many of you read my blog about Jonathan White last month. This is/was the 14-year-old boy who had a brain tumor.

Well, Jonathan isn't . . . that is, Jonathan is evidently a woman with Dissociative Identity Disorder who I will refer to as Madam X from this point forward.

I know. Right now you are wondering how someone this crazy could have fooled all the people she did, including a number of celebrities. I interviewed this person for the story I did on Spirit Jump, the group that connects cancer patients with people who want to make someone's life a little better by sending cards and gifts. I spent a half hour on the phone with this person, who sounded like a sick 14-year-old. I should have known he was a fake when he could complete a sentence without using the word "like."

I am easy to fool because I am one of those people who still believes that everyone is basically good and tells the truth, and I still believe it. But this woman has done some real harm to the hearts and minds of a number of people, which is the only reason I want to offer what I know.

It seems that Madam X was able to convince more than one cancer organization that she was, indeed, a child with a brain tumor. A number of the organizations showered her with gifts and money; they also talked to her parents on the phone. About 10 months ago Madam X contacted one organization and reached the heart of Gena, who worked there doing outreach. His story touched her and Gena became a one-person campaign to help. Her involvement can be found at http://jonthanjayisafraud.blogspot.com/.

What you will learn on the blog is that this has now become a criminal investigation into fraud because Madam X received money in addition to gifts and cards.

Last Sunday, Madam X sent Gena an e-mail that said, in essence, Jonathan is one of many spirits that lives in her body, and she let him out too much and things got out of control while he was looking for love in all the wrong places. She spoke in plurals as in, "we understand" and "our actions."

Bizarre doesn't quite cover it. If it's true.

So, what's the message here? In my 23 years of survivorship, I have come across and read about a few wackos who said they had cancer when they didn't–-an inconceivable idea to me. Those who do it to get attention or love are only sad, but those who do it to get money should be punished.

I am sure there will be more details to come on Madam X, if indeed she is the ring leader of the house of spirits, but until then, if you were taken in by her and want to add to the list, there is an open police file in South Dakota. You can get the detail by going to the blog above.

I do think this particular individual needs to be tracked down and locked up-–whether in a cell with bars or one that is padded will depend on what they find. Because whether or not Madam X is a pathetic person with multiple personality disorder--or a con artist--we know she is smart and can manipulate technology to respond as numerous people when the need arises. Many people talked to Jonathan, and Gena had conversations with his parents. And, if Madam X is totally a con artist, there is nothing to stop her from folding up her tent and moving to another place to begin her sideshow again.

If she is what she says she is, I think we should feel very sad for Madam X that cancer was the only way this part of her psyche could get attention.

But I wouldn't spend a lot of time on it since every day in this country 1,500 people die of cancer. There are millions of people living with cancer as I write this. Some are children with brain tumors--real children--who need the same love and attention given to Jonathan. Find one of them.

Editor's Note: It is now Thursday, July 23, and this morning I had an e-mail that directed me to the press release released by Idaho law enforcement about a woman named Melissa Rice, who was Jonathan. Unfortunately, this story ended in tragedy. Rice was reported dead on Wednesday afternoon. She obviously was very sick and it's sad that her life has ended this way. I hope she has found peace.

Medicare, health care reform and happy birthday

BY KATHY LATOUR | JULY 10, 2009

Well, I am getting ready to celebrate a milestone. On July 18th I celebrate my 60th birthday. First of all, I just don't feel old enough to be 60. When I gave birth to my daughter Kirtley at 36, I kept thinking I would be older than this when she was finished with college and working, but, you guessed it, she is a year out of college and working in New York City at Harry Walker Agency, the country's top speaker's bureau for political speakers (sorry for the plug, but it's a mother's prerogative to brag).

Anyway, next week she will be home and we will be going to Austin to celebrate my birthday with her older siblings from her dad's first marriage and their children, my step-grandchildren. I have one of those modern families that takes a computer program to figure out.

I can't wait to spend time with family and just enjoy getting older. Yep, I am one of those that can't wait for her next birthday. It's what happens to you when you have had cancer. Overnight you stop hating birthdays and start looking forward to them. Right now, I am hoping to make it to 65 when I can spend lots more time being Gran to Dani, Max, Miles, Lilly, Zadie, Tobias, and Terra Belle.

But there is something scary about getting older, and that's health care. Right now we are in the midst of health care reform and, like most of America, I am trying valiantly to keep up with the complexities of an increasingly complex situation. Our health care system is flawed, no one doubts that when we know that even with health care, many people going through cancer come out the other side in financial ruin.

And what about the studies that show that many people with cancer don't seek care because they know they can't pay for it. That is something that should not happen in the greatest country on earth.

Then there is Medicare. When I hit 65, that's what I'll have. I haven't paid much attention to Medicare issues before, but with a 6 now in my age, I have stopped to read a few of the e-mails I get. I got one today that really scared me. It came from medicarerights.org, a nonprofit with offices in New York and Washington D.C. whose mission is to ensure access to affordable health care for older adults and people with disabilities through counseling and advocacy, educational programs and public policy initiatives. Here is the question of the week.

Will health reform help these people? My husband is 62 years old and has been on Social Security Disability for seven years due to heart disease, arthritis and diabetes. He takes 13 prescription drugs daily, plus aspirin to manage his health, including two injectable insulins. I worked in an office and covered us with health insurance for years. When Medicare Part D came into effect I was told by BlueCross/BlueShield that since he was eligible for Medicare Part D, they would no longer pay for his prescriptions. I subsequently lost that job and the coverage. We are not "insurable" on a private policy.

By the first week of March each year, he is in the "donut hole" and his medications cost between $800 and $1,000 per month until approximately the middle of June, when he has spent enough to move to the catastrophic category. We have used credit cards to do this and now the credit card companies are reducing our available credit and/or closing our credit card accounts because of the economy. Our house is now worth less than we owe on it, so there is no equity to tap to consolidate debt. We have not yet paid off last year's donut hole expense and are now adding $4,000 to it. My husband's $21,000/year social security disability puts him over the financial limitations to be eligible for additional help through the State of Georgia or any of the prescription help programs out there, including the manufacturers of the insulin he needs to keep him alive. How are we supposed to pay for this? I can't make enough money to keep my husband alive and we do not qualify for any help. I am terrified. I don't know how to do this. I applied for Partnership for Prescription Assistance; I applied online for help through the State of Georgia; I talked to our doctor; I have searched the internet for help. We don't qualify. >--Kimberly Z, Georgia

There was no answer to the question by the folks at medicarerights, because there isn't an answer. There is only another question. What is health care reform going to do for this family and the others like it?

This man could just as easily have been taking one of the new targeted therapies for cancer that keep it in remission. What then? Or what about women on hormone therapy as part of their treatment for cancer?

If you want to read more about the challenges, and get involved in the national dialogue on health care reform, this website is a good place to start. Go to www.Medicarerights.org.