Sunday, March 15, 2009

Call Me Crazy, But....

My sister did Relay For Life for the first time in 2005. She wore this hat. I didn't make it to Relay that year. I remember her saying to me, "Next year, we will do Relay For Life together!" The next month, cancer took her from us, and our Relay For Life walk was not to be. However, I think that in a way, she was there with me the next year. Our local American Cancer Society dedicated the next Relay For Life to my sister. That year, I was pumped up and ready to go. That year, and every year after, I wore my sister's pink hat and I walked in Relay For Life. That first year, my dad handed me that purple "Cancer Sucks" button, and not wanting to poke the hat, I strung the pin through the hat's tag where it has stayed ever since.

The following two Relays was also good for me. I asked some bloggers if they would mind if I walked in memory of their lost loved ones, and they agreed. I always think of the people who I have met that have been affected by cancer. But last year, I just didn't have my heart into it. While in the past, I asked the online community to help me with donations, I think I did one post. And one person who has always been anonymous has always donated. (Thank you, anonymous person! I do know who you are!) It seemed harder and harder to ask for donations. I still wore the pink hat, I still thought of the people. Even though I haven't forgotten what cancer took for me, I felt sure that others were tired of me talking about my sister and her cancer. But every year, I wear the pink hat and I do my laps around the track.

But last weekend, it hit me. People are still dying of cancer. People of all ages. Mothers and fathers. Sisters and brothers. Friends. Aunts. Uncles. Cousins. All three of my mom's sisters are battling cancer right now. One of my aunts signed up for Relay For Life within minutes when my mom sent out the email a few weeks ago. And I procrastinated. But I've signed up now.

And as I was walking the other day, I realized I wanted to try and get more donations than ever. And I wanted to try to do something to motivate me to raise some money this year.

My sister was 25 when she died of lung cancer. Ironically, this year is also Relay For Life's 25th anniversary. So, my plan this year is to try and raise at least $2500 in donations. And if I raise this much, I intend to walk 25 miles. Part of me doesn't think it can be done. Part of me says there is no way I am going to get enough donations to have to walk 25 miles, so hey, I can just do things I always have done. But, I'm going to train for it, none the less. Because maybe the community out there will prove me wrong. If you are interested in proving me wrong, the link to my page is: http://main.acsevents.org/goto/lyndas_page

Are you willing to help spread the word and prove me wrong?

Labels: awareness, cancer sucks, Laurianne, Laurianne's hope, organizations, Relay For Life, support

Posted by Lynda :: 4:17 PM :: 1 people are more aware ---------------------------------------

Monday, October 27, 2008

Graphic Cigarette Warnings

A few months ago, I came across some graphic cigarette warnings out of Canada. It really made me think for a moment. Why don't we have something like this?

If you are a smoker, or know a smoker, and you live in the United States, you have seen the plain jane warning on cigarette packages. It's something like this:

When I came across the graphic ads from Canada, I wondered if other countries did this as well. I found that there are 12 countries that have graphic cigarette warnings, including the UK, Brazil, New Zealand, and most recently Egypt. These ads show the various disadvantages to smoking. One warning, aimed at men, shows that cigarettes can cause impotence. Another shows young women that cigarettes will affect there unborn children. A third will tell you that that smoking can increase your chance of lung cancer by 80%.

Having watched someone I love go through lung cancer, even though it wasn't caused by cigarettes, I wouldn't wish it on anyone. The pain of not being able to breathe, the insidiousness of the cancer as it spreads through your body. Smoking increases your risk factor in getting lung cancer. Quitting smoking is such a preventable way lowering your risk in getting this disease. When you quit smoking, the benefits to you happen almost immediately. When you quit, your body will start to cleanse itself of the toxins. I have heard quitters say food starts to taste better after just a few days.

The American Cancer Society says this about quitting:

Immediate rewards of quitting
Kicking the tobacco habit offers some benefits that you'll notice right away and some that will develop over time. These rewards can improve your day-to-day life a great deal.

• your breath smells better
• stained teeth get whiter
• bad smelling clothes and hair go away
• your yellow fingers and fingernails disappear
• food tastes better
• your sense of smell returns to normal
• everyday activities no longer leave you out of breath (such as climbing stairs or light housework)

Quitting benefits not only the smoker, but the people around them who smoke. If we had graphic packaging in the United States, I wonder how many people would stop and think about what they are doing to there bodies. As I sit in the coffee shop, writing this article, I wonder if the two men sitting outside, smoking their cigarettes near the No Smoking by ordinance of the City of Santa Rosa sign would consider if smoking was worth the impotence risk, if the woman who bummed a cigarette from them would consider that smoking could increase the risk of SIDS to her future children, if the guy waiting smoking and waiting for the light to change would stop would lower his chance of having his family watch him suffer through some smoking disease or cancer.

Because right now, that little inconsipicious text box is pretty easy to ignore.

*This post is dedicated to my friend. Good luck on your journey! You will only be better for it.*

Labels: lung cancer, multiple myeloma, organizations, second-hand smoke, share a story, support

Posted by Lynda :: 3:50 PM :: 0 people are more aware ---------------------------------------

Tuesday, February 19, 2008

Some Cancer Patients Turn to 'Coaches'

Feb 18, 5:40 PM (ET)

By MARILYNN MARCHIONE

The advice made her head spin: Have the lump removed. No, let them take the whole breast. Chemo? Radiation? Everyone seemed to have an opinion.

"I just shut everyone down around me," said Bernie Brann, a newly diagnosed cancer patient from upstate New York. "You're just so overwhelmed with information."

Bad advice, or just too much of it, can compound the trauma and damage done by the disease itself, cancer patients often find. Friends and relatives are important for support, but when these untrained people act as cancer coaches, they can sway people to make poor decisions about their care.

This includes survivors, whose opinions are highly valued by patients suddenly facing the scary diagnosis. They may know a lot about cancer, but can do harm if they project their own experiences onto someone else, who may have a different form of the disease that needs different treatment.

Survivors also may be out of touch with changes in the field, where genetic discoveries are rapidly reshaping notions of who needs chemotherapy and what kind.

What's the solution?

Many advocacy groups and hospitals are using "professional" coaches - trained volunteers or paid workers who can objectively help new patients navigate the maze of information and options.

The American Cancer Society started a patient navigator program a few years ago that now operates in 87 locations and is planning to expand. The National Breast Cancer Coalition also trains coaches, and big treatment hospitals like the University of Texas' M.D. Anderson Cancer Center are increasingly using them for breast, prostate, lung and other types of cancer.

Attendance set records in December at one of the top training programs, held during the San Antonio Breast Cancer Symposium. More than 240 breast cancer survivors spent late nights at the convention center, taking notes as scientists schooled them on the latest research.

These women go home to volunteer in hospitals and support groups where they staff hotlines, meet with new patients and teach other coaches what they learned. Demand for this training is so great that the Alamo Breast Cancer Foundation gets grants from the Avon Foundation and nine drug companies to subsidize some attendees, but still can't meet the need. Dozens are turned down each year.

To find a coach or navigator, patients can ask their doctors, local cancer hospitals or groups like the cancer society for help. Brann, feeling a need for unbiased help, found a coach by calling the Cancer Resource Center of the Finger Lakes, where associate director Bob Riter provided it.

"People are usually too free about giving advice," said Riter (pronounced RITT-er), a survivor of male breast cancer and graduate of the San Antonio program. "We never tell people what to do. We provide information, and we help them think out loud."

Whether amateur or professional, a good cancer coach should offer these things, experts say:

_Support: an ear to listen, a shoulder to cry on, a hand to hold.

_Resources: reliable information or help getting it, and only if the patient wants it.

_Objectivity: a willingness to help patients discover what is best for them, rather than to validate the coach's own cancer battle and choices.

"There's a big difference in saying, 'This is what I did' and 'Here's what you should do,'" Riter said.

Elderly people are especially vulnerable to having their decisions usurped, he added. "Sometimes middle-aged kids impose what they want to do on their parents" without asking what the parent wants.

No hard numbers exist on how many cancer patients bring professional coaches or informal ones - a relative or friend - to doctor appointments where treatments are discussed.

"The person coming with you can either be an asset or a liability," said Meg Gaines, a lawyer and ovarian cancer survivor who runs the Center for Patient Partnerships, an advocacy resource at the University of Wisconsin-Madison.

It is good if the coach can ask questions, gather information and take notes for the shell-shocked patient to use later, she said. It is bad if the coach interferes with the patient's decisions.

Doctors often find themselves in the middle, fighting for the patient's trust. Some choices come down to personal values and risk tolerance, said Dr. C. Kent Osborne, a breast cancer specialist at Baylor College of Medicine in Houston.

Whether to have chemotherapy is an example. Some women want to avoid it at all cost. Others "don't want to leave any stone unturned," and demand it even if it has harmful side effects and only a 1 percent chance of helping, he said.

As for patients being swayed by others, "a lot of that occurs when they're not in the doctor's office and they go back to their home and their community," Osborne said. "Then well-meaning friends might say, 'Well, gee, I was treated with this and you should get that,' or 'Aunt Molly got this and you should get that, too,' not understanding that every patient is different."

Patients can fall into the same trap when they coach each other, Gaines said.

"This is the potential downside of support groups - you don't have expertise around the room," she said. "Someone may be describing her own treatment and others will think, 'My doctor didn't tell me that,'" possibly because their cancer is different.

Mary Michaud, policy director at the Wisconsin center, warns: "Beware of people who tell you your experience is going to be just like theirs."

Anna Cluxton, a Columbus, Ohio, woman diagnosed with breast cancer at age 32, feels strongly that she did the right thing having her whole breast removed rather than just the lump. When she coaches other young women whose doctors have advised less drastic surgery, she said she will not express an opinion, but suggests a pointed question: "Ask them, 'What will be my chances of recurrence in that same breast?'"

"You need to be aware of all the options" and discuss them fairly, she said.

Vira Brooks, an Omaha public schools administrator, had a different experience 13 years ago. Although she had a tiny, very early-stage tumor, her surgeon recommended removing the whole breast. She chose less drastic treatment after a survivor she knew coached her through looking at other options.

"She was basically my champion. She helped me navigate the system," Brooks said. "She listened, she shared with me what she had been through," but didn't try to tell her what to do.

Brooks now tries to do the same. She has coached dozens of patients, including black women like herself who are more likely to be diagnosed at later stages and are more likely to die from the disease. A local hospital refers people to her.

As for Bernie Brann, the patient from upstate New York, she did not seek a lot of advice when she was first diagnosed. But word got around at Ithaca College Health Center, where the 69-year-old woman works two nights a week as a nurse's aide.

Doctors told her she could either have a mastectomy or just the lump removed, and at first, she thought she would do the latter. "But I had so many people saying, 'No, no, no, that's not the way to go.' Most people said, 'Have a mastectomy.' It was so radical. It just overwhelmed me. It was not something I wanted to do."

She credits her three children with offering support without telling her what to do. Her oldest son went with her to appointments, as did a close friend with nursing training. Ultimately, she changed her mind about what would be best for her, and had a mastectomy in late December.

"I didn't want to go through this again. My feeling was, get in there, get rid of it, get on with your life," she said.

"It's been quite a rollercoaster," she said. But she feels more confident now that she can make good decisions about her future care.

---

On the Net:

American Cancer Society: http://www.cancer.org

Personalized treatment decision tool: http://tinyurl.com/2uvyu6

American Society of Clinical Oncology patient site: http://www.plwc.org

National Cancer Institute: http://www.cancer.gov

Treatment options: http://www.nccn.org/patients

Association of Cancer Online Resources: http://www.acor.org

Breast cancer support groups:

http://www.y-me.org

http://www.komen.org

http://www.bcaction.org

http://www.stopbreastcancer.org

Labels: cancer, chemotherapy, coaches, lung cancer, radiation, support

Posted by Henry (Calem's Opa) :: 2:10 PM :: 0 people are more aware ---------------------------------------