Tomorrow, December 1st, is World Aids Day

Yes, tomorrow is World Aids Day. The first Aids patient was 30 years ago, but still this is a top health issue globally. The two themes of focus this year are universal access to treatment and human/civil rights of HIV positive persons.

But first, you may wonder why I'm writing about Aids in a cancer blog? Because people with Aids or HIV get cancer. The most common types are Kaposi sarcoma and non-Hodgkin lymphoma. Other AIDS-related cancers include Hodgkin disease and cancers of the lung, mouth, cervix, and digestive system.

Universal Access to HIV/Aids Treatments: Many areas of Africa are rampant with the disease and have no way to get care. Similarly, poverty-striken people in many parts of the world cannot access medical treatments. In fact, this is a huge problem right here in the USA. Hopefully, this will change with the new univeral healthcare programs.

Human Rights of HIV Positive Persons: Even 30 years later, we need to safeguard the rights of HIV/Aids infected persons. They deserve the same human dignity, understanding and the respect any person does. There is a stigma against persons with HIV. They have been fired from their jobs or denied employment. They have been labeled "deviants" and received workplace discrimination, which makes them feel isolated and vulnerable. Today, there is need to federal legislation to protect these marginalized Americans.

You can help by contacting your congressmen or donating to HIV/Aids organizations.

Product Focus: Boobie Head Scarfs & Knit Tassel Hats

Well, it's that time of year and chill is in the air! The most fun way to stay warm and cozy this fall and winter is with our unisex scarfs and hats.

The scarves are soft-as-a-baby's-behind fleece and oversized for comfort and warmth. They come in year-round favorite BoobieHead pink, a relaxed warm grey, and the always fashionable black. Of course, they have an embroidered BH logo (complete with nips on the B's!)

Our cheeky knit caps are lined with the same comfy soft fleece. They have flaps to keep your ears toasty warm. To top it all off, they have funky cool tassels!

Be cool and stay warm, always with a good humor.

These are great Christmas gifts for all ages.

The best thing is, you are helping a cancer patient with every purchase.

What an inspiration!

Last week, I overheard a wonderful conversation. A local lady was gushing about what a hero my boss, Britt Figueroa, has become in our St Simons Island/Brunswick, Georgia community.

Most mortal humans, rightfully so, cannot handle the pressures of having cancer, telling loved ones, going through treatments, and perhaps even having one of your precious breasts chopped off your body.

Britt not only handled it for herself and her children, but she also listened to the pleas of all the other cancer patients she kept meeting. These people with cancer were talking about the ever-expanding bills for cancer treatments and that many would have to file bankruptcy in order to save their homes. Or they would choose to have the cancer removed, but have absolutely no followup care.

Britt knew that, in order to regain health, the last thing these people should be worrying about is money, yet all too frequently, this is the harsh reality. They were too young to get benefits from Medicare and had too many assets to qualify for other aid agencies.

So, in the midst of her own cancer nightmare (and while caring for her two lovely children), she conceived, created, and coalesced her new company, BoobieHeadInc. and started Your Cancer Care foundation. The sole purpose of the fund is to assist cancer patients to pay their bills and prevent bankruptcies. She works with our local hospital Southeast Georgia Health System and others to pay for Glynn County Georgia patient bills. Later, her plan is to expand way beyond Glynn County to assist other Americans.

I knew her story and admire her courage: that's why I work with her. But, somehow, listening to that woman enthusiastically fawning over Britt, what she has overcome and created to help others in a very few months, I am inspired anew.

Let's do this, people!

Get active and get involved!

Ever hear in the news, that the “FDA advisory committee has recommended (or not recommended) approval for a particular drug therapy”? The FDA typically follows those recommendations, but who is the FDA advisory committee? Certainly, the committee is made up of well-respected scientists and the like, but 15 years ago, cancer patient representatives got a boost in the arm; people with an interest in cancer got the ability to be active participants with full voting rights included!

Bolstered by the experience and success of HIV/AIDS patient representative program, the government added a cancer patient representative program.

Staff is located in the
Office of Special Health Issues.
Contact info:
Office of Special Health Issues
Phone: 301-796-8460
Email: OSHI@fda.hhs.gov
10903 New Hampshire Avenue, Bld 32, Room 5367
Silver Spring, MD 20993

Check out the site www.fda.gov. Then put in “cancer liaison” in the search bar at the top right. When I went to the site, the cancer liaison program was the first link.
Or go directly to the site at: http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates/CancerLiaisonProgram/default.htm
The site is fairly user friendly, and chock full of information on a variety of topics including patient advocacy and drug development. You can download a pdf brochure
which explains the program and how to apply.
http://www.fda.gov/downloads/ForConsumers/ByAudience/ForPatientAdvocates/PatientInvolvement/UCM143432.pdf
Here’s a couple of quotes from actual patient representative that I found particulary astute.
Patients can offer a point of view that no one else on the committee can provide because we've had the experience to share what they haven't," says patient representative Martha Solonche, a five-year survivor of both uterine and ovarian cancer. Solonche believes that the "emotionally charged" nature of some of the issues is "all the more reason for someone with the disease to argue a point."
"One of the biggest hurdles at a committee meeting," says Sallie Forman, a patient representative who suffers from colon cancer, "is convincing the rest of the panel that the approval of a drug that may buy me three or four more years may also take away my quality of life. In other words, a drug that is so toxic to the system, but gives one more week of life, isn't worth it."
Solonche agrees. "No one on the panel could understand this. Only someone who's lived through constant side effects, every time they take a certain drug, can know what that's like."

Enjoy the site and you may be the next patient representative!

Best Books on Cancer

"PlanetCancer" by Heidi Schultz Adams and Christopher Schultz

"Crazy, Sexy Cancer" by Kris Carr

"Everything Changes: The Insider's Guide to Cancer in Your 20s and 30s" by Kairol Rosenthal

"Hope Begins in the Dark" by Jamie Reno

"Keep Climbing: How I Beat Cancer and Reached the Top of the World," by Sean Swarner

"Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer" by Michael Lerner

"Living Well with Cancer: A Nurse Tells You Everything You Need to Know" by Libby Schmais

"The Breast Cancer Survival Manual: A Step-by-Step Guide for the Woman with Newly Diagnosed Breast Cancer" by John Link

"Diagnosis Cancer: Your Guide Through the First Few Months" by Wendy Schlessel Harpham

"Cancer: 50 Essential Things to Do: Revised and Updated Edition" by Greg Anderson

"It's Not About the Bike: My Journey Back to Life" by Lance Armstrong

... More to come in further posts!

A New Way of Looking at Good Health vs. Cancer

Returning from TEDMED, an astonishing meeting of exceptional minds from science, medicine, business and technology, Dr. Mark Hyman says: “we have been asking the wrong question about cancer. We have asked "what": What tumor do you have? What kind of chemotherapy, surgery or radiation is needed for that tumor? What is your prognosis? Instead, we need to be asking "why" and "how": Why did this cancer grow? How can you change the conditions that feed and support cancer-cell growth? How did the terrain of your garden become a host to such an invasive weed?”

I wasn’t aware of this man’s work before reading about him in the Huffington Post, but I am following him on Twitter now. He reminds us that “scientific literature is abundant with evidence that diet, exercise, thoughts, feelings and environmental toxins all influence the initiation, growth and progression of cancer. If a nutrient-poor diet full of sugar, lack of exercise, chronic stress, persistent pollutants and heavy metals can cause cancer, could it be that a nutrient-dense, plant-based diet, physical activity, changing thoughts and reactions to stress, and detoxification might treat the garden in which cancer grows? Treat the soil, not the plant. It is a foundational principle of sustainable agriculture, and of sustainable health.”

This is a manageable approach: enhance immune function through diet and lifestyle changes, nutrient or phytonutrient therapies. We can enhance our body's own detoxification system to promote the elimination of carcinogenic compounds. To improve hormone metabolism and reduce the carcinogenic effects of too much insulin, we can reduce our high sugar and refined carbohydrate diet as well as eliminate use of hormone-disrupting xenobiotics and petrochemicals.

Furthermore, Hyman believes we can alter our genes by changing the inputs that control their expression: diet, nutrients, phytonutrients, toxins, stress and other sources of inflammation. Finally, if we focus on less troublesome and more generative thoughts, we create more uplifting emotions. Hyman sums it up: “all good fertilizer for the soil in the garden of our body.”

Wow, this is what great healthcare can become! In the meantime, you can do this!

Tattoo Artist Helps Cancer Patients Reclaim Their Identity

I just found this article in the Syracuse Post Standard about a nurse-turned-tattoo artist who puts finishing touches on the reconstructed breasts of central New York cancer survivors. A local plastic surgeon came to her to tattoo areolas and nipples on their patients' breasts after reconstruction. Some women come to her to cover their scars and others as a way to celebrate the years after surgery. Whatever their reasons for wanting their tattoos, this strikes me as a wonderful way for a former nurse to continue caring: it helps to heal the women's psyche as it covers the scars.

The first cancer patient Kim Leach ever tattooed presented the biggest challenge: a woman who had serious complications that left her with no breasts and a heavily scarred chest. "She said, 'My chest is destroyed and I feel like I lost my womanhood to cancer,'" Leach recalled. "I said, 'I can give you something you are so proud of on your chest that it won't matter whether you have breasts or not.'" It took almost a year to complete the uniquely personal montage.

"I get these girls on a good day," Leach said. "Their cancer is gone and this is their last step to getting their body back. It's an act with deep meaning, about reclaiming their identity as a woman. I give them that last kick of empowerment over breast cancer."

Quite an amazing story and person!

How to look out for lung cancer

Symptoms of lung cancer may include:
A new cough that will not go away
Changes in a chronic cough or "smoker's cough"
Coughing up blood, even a small amount
Shortness of breath
Chest pain
Wheezing
Hoarseness
Losing weight without trying
Bone pain
Headache

Risk factors for lung cancer include:

Smoking. Still the greatest risk factor, your risk of lung cancer increases with the number of cigarettes and the number of years you smoke. To lower your risk, quit at any age!
Exposure to secondhand smoke... even if you don't smoke.
Exposure to radon gas. Radon testing can determine whether levels are safe in your home or office.
Exposure to asbestos and other chemicals. Workplace exposure to asbestos, arsenic, chromium, nickel and tar can increase your risk of developing lung cancer, especially if you're a smoker.
Family history of lung cancer. People with a parent, sibling or other first-degree relative with lung cancer have an increased risk of the disease.
Excessive alcohol use. Drink no more than one drink a day for women or two drinks a day for men — or you may increase your risk of lung cancer.
COPD. People with certain lung diseases, such as chronic obstructive pulmonary disease, may have an increased risk of lung cancer.

Please see your doctor if you recognize these symptoms or risk factors. The best results come from early diagnosis.

Lung Cancer Treatment News

The American College of Chest Physicians presented new data that some drugs commonly used for diabetes treatment may also help slow the spread of lung cancer. Some drugs including metformin or thiazolidedione (TZDs) could also increase the life expectancy of lung cancer patients.

Ask your doctor if this treatment could be beneficial to you or your loved ones.

Breathe and be patient

ok.

So, i have a 20 year old nephew who has been battling his own war against Hodgkins Lymphoma for a year and a half. He was diagnosed 3 months prior to my own. Our family received a recent scare that his October PET scan showed a large mass where his old tumors kept reappearing. He finished massive doses of radiation spring 2010. Keep in mind, this kid has undergone massive doses of chemo, stem cell replacement and wrapped it up with radiation. He's been through hell and back. So when this mass appeared, needless to say, our hearts dropped for the umpteenth time. The roller coaster ride of emotions and pure distress. We all hunkered down and started the prayer chains again. That's all we have to grab and hold on to when news like this arrives.

I had to learn how to breathe deep again, let go and let God.......again.....and be patient for more detailed news. It arrived this week.

His biopsy confirmed that that large mass was from radiation.....he's still healing!

No cancer cells detected! Yay!!!

He's at MD Anderson in Houston and they're going to do another PET scan this month just to make sure.

We tend to stress ourselves out with all kinds of crappy news.

Folks, we must remember to breathe, be patient and trust everything will work out.

Our hearts and minds need this discipline. It's a tough thing to practice but oh, soooo do-able.

Life is grand......make sure you're living it today. TODAY is what we all have.

love always.........britt

November is COPD and Lung Cancer Awareness Month

Do you and your loved ones know:
• COPD is the fourth leading cause of death in the U.S.? Or that it affects more than 12 million Americans?
• Chronic obstructive pulmonary disease (COPD) – which includes emphysema and chronic bronchitis –describes the obstruction of airflow.
• COPD is often preventable and treatable.
• Lung cancer is the second-most commonly diagnosed cancer in both men and women. However it is still the most common cause of cancer death.
November is also Pancreatic Cancer Awareness Month, sponsered by the Pancreatic Cancer Action Network. And, November 18th is the American Cancer Society's Great American Smokeout.