Battling Cancer

Heard any cancer myths or legends lately? How about these?

Cancer Myths: Myths are unproven collective belief.

Did you know that the results of a 2005 an American Cancer Society survey of over 900 people who had not had cancer indicated that 75% of those surveyed believed the following MYTHS were either true or they weren’t sure if they were true or not?

• “Pain medications are not effective in reducing the amount of pain people have from cancer.”
• “All you need to beat cancer is a positive attitude, not treatment.”
• “Treating cancer with surgery can cause it to spread throughout the body.”
• “There is currently a cure for cancer but the medical industry won’t tell the public about it because they make too much money treating cancer patients.”
• “Cancer is something that cannot be effectively treated.”

Then there is the myth that lung cancer tumors spreads when exposed to air. While it is a myth, this does indicate that people’s beliefs can and do influence their treatment choices.

Have you heard that fluoridated water leads to cancer? Per the National Cancer Institute: “a recent report by the Centers for Disease Control and Prevention summarized extensive research findings and concluded that studies to date have produced “no credible evidence” of an association between fluoridated drinking water and an increased risk for cancer.”

Breast implants do not cause cancer. This myth has no scientific basis. In fact it is suggested that women with implants are more likely to be familiar with their anatomy and pick up on unusual lumps or lesions. There is also no evidence that breast implants lead to breast cancer recurrences.

Articles on Common Cancer Myths:

Dana-Farber Cancer Institute: Dispelling Cancer Myths

Mayo Clinic: Cancer Treatment Myths

The American Cancer Society: Many Buy into Common Cancer Myths

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Another day in paradise…just think about it.

Cancer treatment is dependent upon access to that treatment.

The CDC reported in 2006 that 54.5 million Americans or 18.6% had been uninsured for at least part of the year.

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Music has the amazing ability to turn emotions on and off, to transport us to another place and yes, to heal.

Music transcends race, sex, religion and boundaries of time and space.

What’s playing on your iPod, your computer, or in the background of your mind?

Right now I’m listening to Enya’s Paint the Sky with Stars, because to me the music translates to calming empowerment.

How does music factor into complementary cancer therapy?

From the American Music Therapy Association, the definition of music therapy:

Music Therapy is an established health care profession that uses music to address physical, emotional, cognitive and social needs of individuals of all ages. Music therapy interventions can be designed to:

• promote wellness
• manage stress
• alleviate pain
• express feelings
• enhance memory
• improve communication
• promote physical rehabilitation

Combining music and science to promote healing and wellness, is the philosophy of The Institute of Music and Neurological Function.

The Institute utilizes psychotherapy trained music therapists to facilitate with the goal of facilitating self-expression and providing emotional support. Music becomes a method of communication, a tool of expression and a coping mechanism.

Goals of a this type of emotional support therapy include reduced pain, relaxation, stimulated communication and learned coping skills.

The Nordoff-Robbins Center for Music Therapy located on the campus of NYU and affiliated with a graduate program in music therapy, offers programs for children, adolescents and adults to cope with life stressors and to provide therapeutic self expression.

Stanford University’s Center for Music Research and Acoustics released some preliminary symposium results stating that “music with a strong beat stimulates the brain and ultimately causes brainwaves to resonate in time with the rhythm, research has shown. Slow beats encourage the slow brainwaves that are associated with hypnotic or meditative states. Faster beats may encourage more alert and concentrated thinking.”

Neurologist Dr. Oliver Sacks, author of Awakenings shares “As a result of a brain tumor, my patient Greg has not been able to retain any new memories since the 1970s. But if we talk about or play his favorite Grateful Dead songs, his amnesia is bypassed. He becomes vividly animated and can reminisce about their early concerts.” In 2006 Dr. Sacks received the Music Has Power Award given to individuals whose accomplishments have brought new understanding to the use of the power of music to heal and awaken.

Music for pain? A SciencCentral News video shares that music can boost the effectiveness of pain medications, reducing pain up to 31%.

Don Campbell’s The Mozart Effect Resource Center is all about the “transformational powers of music, health, education and well being.”

Campbell’s book, The Mozart Effect: Tapping the Power of Music to Heal the Body, Strengthen the Mind and Unlock the Creative Spirit.

Publisher description: Stimulating, authoritative, and often lyrical, The Mozart Effect has a simple but life-changing message: music is medicine for the body, the mind, and the soul. Campbell shows how modern science has begun to confirm this ancient wisdom, finding evidence that listening to certain types of music can improve the quality of life in almost every respect. Here are dramatic accounts of how music is used to deal with everything from anxiety to cancer, high blood pressure, chronic pain, dyslexia, and even mental illness.

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Cancer Blogging.

First, what exactly is a blog?

“A blog (an abridgment of the term web log) is a website where entries are commonly displayed in reverse chronological order.” Source.

And how many blogs are out there? The estimated 112.8 million English speaking blogs is probably an underestimate.

So why blog? Why write a book or create the lyrics to a song? Do you have something to say that others want to hear?

If you are a cancer patient, you are one of 10,326,000 people. Source.

This doesn’t include cancer survivors.

That’s a lot of people you have a commonality with, not to mention every single person touched by cancer.

Does your journey have a value to others? I think so and obviously so do others.

There is a huge relief that comes from reading a journey similar to your own. That sense of not being alone is hugely comforting. As we’ve discussed before regarding social platforms, sometimes it does take one to know one. Who truly knows what you are dealing with every moment of every day better than someone who IS there, right beside you, in a similar situation?

A New York Times article, February 26, 2008 discusses the value of chronicling for cancer patients. The Power of Words for Cancer Patients.

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Which of these is your hospital nurse?

Is it Nurse Ratched

of One Flew Over the Cuckoo’s Nest?

Carol Hathaway from E.R maybe?

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Lunch with friends. And you DO NOT want the topic of conversation every single week to be YOUR cancer. And even if you wanted the world to rotate around YOU– because hello, let’s get real, most days your mortality is more important to you than your friend’s dishing of professional workplace dirt–often your friends try as they may, don’t always GET IT.

Who does get it? Someone who has been there. Someone who IS THERE RIGHT NOW.

Which is why a social community is such a great source of support, information and yes, FUN.

Some communities remain chat rooms and bulletin boards, while others have evolved into true multi-feature dynamic communities.

General Requisites for Most Social Communities:

• Create a password
• Submit your email address
• Choose a user name-your name in the community
• Decide how much or how little about yourself you want to share
• Picture time-your smiling face or not

Stumbling along in the user community I’ve discovered a few things that are helpful.

Use an alternative email address for your community messages. It’s much easier and tidier to keep all facets of your world separate.

Do share about yourself. Chances are there is someone out there who does get you, right where you are in your journey. Cancer battlers have more things in common than you might think.

Visit often and comment. You are an important part of the community.

Put up a picture. It makes everything more personal. Or how about an avatar?

Places to get an avatar:

Yahoo Avatars

Meez

Many social communities also give you free, create your own blog options and/or create your own page options.

The best way to find your way around these communities is to just, (sorry) DO IT.

Wander around, make friends, invite friends and remember, when all else fails, try the HELP icon.

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Who is your advocate?

Unfortunately, when you are feeling your worst is when you must be your most diligent. The battling cancer war includes a few small skirmishes along the way. No matter what your battle plan you should have help in the form of an advocate.

Here are just some of the reasons why.

1. Inputting information:You’ve just been diagnosed with cancer and you’re being overloaded with new terminology and massive amounts of information. Your advocate will be taking notes in the doctor’s office, at the clinic and anywhere you are introduced to new information. You can sit back and let your head spin.

2. Health care decisions: Post op, as you struggle with your nasogastric tube is not the time to wonder what your doctor said about treatment options, or where your notes are on side effects of that new pill you took or to hope you have the strength to surf the web for information. Your advocate can help you sift through information, do research and assist you in making the best decision possible for your care.

3. Your barrier: The health care advocate is the person who stands between you and the world. Your advocate is the person who gets up and approaches that intimidating clerk in the waiting room and reminds them you have been waiting an hour. They will also block the door to your room when you are napping and someone wants to scrub your floor. Enough said.

4. Mistakes happen: No one likes to discuss mistakes, especially not your caregivers. But as long as there are humans, there will be human error. Your advocate has your medical history and can double check every pill brought to you and every IV bag that is hung.

5.Dealing with red-tape: The maze of insurance and hospital bureaucratic regulations is overwhelming when you feel 100%. Let your advocate play phone tag and chase paperwork from simple pre-qualification details to following up insurance payments.

6. The squeaky wheel gets greased: Here’s a little secret from the nurse’s break room. The patient with the annoying friend who keeps pushing the call button for pain meds exactly when they are due, is likely to get the nurse’s attention first. I’m not saying this is fair but then again, the cancer patient already knows life is far from fair.

7. Hand holding: There is much to be said for the simple human touch. Consider how much time passes in the typical hospital day without human touch–real human touch, not clinical touch, as though you were inanimate. The simple squeeze of a hand communicates far more eloquently and contributes more to your recovery than words.

How to Find an Advocate:

Consider who you trust and who you would be willing to be an advocate for if roles were reversed. Sometimes several close friends are willing to share your advocacy.

Additionally there are professionals whose job is patient advocacy; these include private duty nurses. They’ll put your needs first because they are being paid to. Ask you hospital social worker or doctor if they can recommend someone.

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I just got some really exciting news from some old labmates of mine: Judah Folkman, the father of angiogenesis therapy in cancer, has agreed to speak at my alma mater!

Who is Judah Folkman and Why Should I Care?

To understand the significance of this event, please allow me to give you a brief cell biology lesson: The body’s cells are surrounded by capillaries, or tiny blood vessels, which nourish the cells and carry off their waste. These capillaries are made up of endothelial cells, and because these endothelial cells generally never divide, the blood vasculature pretty much stays the same. Angiogenesis refers to the few times (like during wound healing or menstruation) when these sleepy endothelial cells actually do decide to wake up and start dividing. Like anything that has to go to work after a long nap, the cells get everything they need to get done in a short, controlled burst, and then tune right back out again.

Back in the 1960’s, it was generally thought that the living cells that comprise tumors were just feeding off the blood supply of normal tissue. Dr. Folkman was the first to hypothesize that perhaps these unwanted tumor cells were surviving due to angiogenic activity. Turns out that he was right, and a new way to approach cancer treatment was born.

A flurry of anti-angiogenic approaches have found success not just in cancer, but in but heart disease, obesity, and infertility as well. Researchers in Dr. Folkman’s laboratory have been in the forefront of the “stop ‘em where it starts” approach to management and treatment, and both the man and his research have been highlighted in books both by him and others, a documentary, several news stories, and most recently, new business development.

The Judah Folkman Lunchbox

Because he was not afraid to try new approaches when almost everyone in his field thought he was wrong, I’ve considered Dr. Folkman to be a Rock Star Scientist in my eyes for years. Both my husband and I had done our graduate work in an cancer angiogenesis laboratory, so we used to joke that getting the thumbs-up approval from Dr. Folkman would trump even a Nobel Prize in Medicine.

Fast forward a few years to this past April when I presented my work at the American Association of Cancer Research Annual Meeting for the first time. Until my labmates and I got our conference programs in the Los Angeles Conference Center, I had no idea that it was the 100th anniversary of AACR and that Dr. Folkman had been invited to be a keynote speaker. After briefly hyperventilating, I planned my entire schedule around seeing him speak. When I saw him at his sunrise session talk, he was both humble and instantly likeable as he spoke not just about his recent work but that of his collaborators.

Since I figured I’d never get the chance to see him in person again, I hung around afterwards with a small crowd of scientists. As I eavesdropped on the other people talking to him, I realized that each person he was talking to was asking for his expert opinion on research approaches or clinical practices. They were all dressed up and from big-name institutions. I was some scruffy kid who came from an cancer center no one’s ever heard of — and I had nothing brilliant to say! When it came to my turn in line, I said, in true Lesly-fashion, the first thing that came to mind: “Dr. Folkman, I’m Lesly, and me and my husband think that you’re so great that we would buy a lunchbox with your face on it!”

And there it was for all to see: my pedicured foot inserted neatly in my mouth. More →

I met my friend M. while she was doing an undergraduate summer internship in a cancer research at the university where I worked. A year later, she joined my school as a PhD student and I trained her when she did a research rotation in my laboratory. About this time last year, she had a night on the town cut short by sudden, uncontrollable bleeding. She went home feeling pretty sick, and later that night, her boyfriend rushed her to the emergency room. Later on that week, she was told that that she had cancer.

We were friends — not best friends, but close enough where we regularly shared stories about our wacky families and our mutual fear that a life at the bench might not be for us, met for lunch, and watched basketball games when we could. In the months that followed, we got a lot closer. I visited her in her emergency hospitalizations, helped her sort through the business of hospital billing, and drove her to her specialist appointments four hours away at Johns Hopkins University. We even ended up being interviewed for a “Dateline” special together for a documentary on cancer patients!

In the time that she wasn’t in the hospital or at home recovering from procedures, we spent a lot of time talking. She told me all about how she wanted her life to be as normal as possible, so whenever I called her, we talked about the most mundane things like the latest gossip about our coworkers and the quirks about our bosses.

The thing that she didn’t know was that it was actually really hard for me to act like things were normal. I didn’t know why, but sometimes the prospect of talking to her was sometimes really daunting for me. Sometimes I wouldn’t respond to her email and phone calls right away. I hated it because I wanted to be a good friend to her, but I didn’t know how to deal with what I was feeling. I’m ashamed to say that the reason was that I just felt uncomfortable being reminded with the fact that she had cancer — and it could have been me!

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