Breakaway from Cancer – Livermore Stage

Today at the Amgen Tour of California, we met some more amazing cancer survivors and their families, caregivers and advocates. Take for example survivors Andy, from California, and Lee, from upstate New York, who met at Breakaway two years ago and have been friends since.

In addition to Andy and Lee, we had a bunch of other great visitors at our booth, like Peggy Liou, a breast cancer survivor who fired the start gun at the beginning of today’s race.

Today our partner the Prevent Cancer Foundation hosted the Breakaway Mile, which was led by Breakaway Champion Bob Hammer, whose “Have a Ball” foundation has raised more than $1,000,000 to benefit 20 cancer organizations since its start in 2005.

Overall, the Livermore stage was yet another great day on tour. Next stop: Clovis!

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Breakaway from Cancer – Day 1

Day 1 of the Amgen Tour of California and Breakaway from Cancer (BFC) was fantastic!  In addition to being a part of the greatest cycling event in the U.S., CSC is honored to be a part of BFC for the 7th consecutive year and it is truly an honor.  As you may have read in previous blog entries, BFC is designed to raise awareness of support resources available to people touched by cancer.   The partner organizations cover each of the key areas of need of the people we serve from prevention (Prevent Cancer Foundation), to reimbursement/access issues (Patient Advocate Foundation), to survivorship (National Coalition for Cancer Survivorship), to social and emotional support (Cancer Support Community).

Today, I met so many wonderful people who truly wanted to discuss their journey with cancer.  I met a woman in her 40’s that lost her dad to cancer 2 weeks ago – she clearly misses him and she will join an online bereavement group.  I met Chris who walked the Breakaway Mile in honor of a loved one currently in active treatment.  I met a beautiful and articulate woman who shared with me that her 30-year journey began with a diagnosis of breast cancer, then colon cancer, then uterine cancer. She was celebrating her daughter’s 5-year survival of a diagnosis of uterine cancer – and as she was leaving, she tapped me on the shoulder and said, “By the way, I’m 82-years old!”   These are the stories of people living with cancer.  Some live with the loss of cancer, some live with the battle of cancer, and some live with the ability to celebrate the victories.

The Cancer Support Community would like to congratulate Marc Van Riper who was named the Breakaway from Cancer Champion – Santa Rosa!  Marc co-founded Kathy’s Camp for Kids, a nonprofit organization dedicated to meeting the needs of children whose parent has cancer.  Marc led the Breakaway Mile and walked with 100+ cancer survivors, patients, caregivers, and advocates.  We celebrate with them all.

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CSC Gears up for the Amgen Tour of California

Breakaway Mile at the 2011 Amgen Tour of California

The Breakaway Mile walk at the 2011 Amgen Tour of CA

It’s hard to believe the Amgen Tour of California is just a few days away! In addition to being the largest cycling event in America, it is also the signature event of the Breakaway from Cancer initiative—a national partnership to increase awareness of the many resources available to people affected by cancer.

The eight-day race kicks off this Sunday in Santa Rosa and wraps up on Sunday, May 20 in downtown Los Angeles. Members of the CSC Headquarters team as well as a few of our local California affiliates will be there along the way, helping to promote all of the free education and support that is available through CSC and our Breakaway from Cancer partners.

To learn more about the Breakaway from Cancer initiative, visit our website or www.breakawayfromcancer.com

Stay tuned for more blog posts, videos, photos and more from
the 2012 Amgen Tour of California!

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CSC on Capitol Hill!

Wow!  What an amazing couple of days we have had!

On May 7 our team in D.C. was joined by several of our affiliate leaders from across the United States.  This group spent time reviewing policy issues of importance to our mission and also planning meetings with their members of Congress.  Of particular importance to our mission is the work to ensure that social and emotional care is a routine part of the
overall treatment plan for anyone living with cancer.  According to a report issued by the Institute of Medicine in 2007, Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs, approximately one-third to one-half of all patients with cancer need support of some kind, yet the delivery of this level of care is the exception rather than the rule.  Additionally, emotional care without a formal mental health diagnosis is not reimbursed by insurers which makes the work we do and the delivery of care valuing over $40 million per year free of charge all the more important.   Finally, there is information available to indicate that patients who receive support have less distress, likely have an increase in survival, and may cost the health care system less than patients who do not
receive such support.  This information as well as other, evidence-based information was shared broadly on the Hill over the course of 2 days.

On May 8, CSC and the House Cancer Caucus hosted a Hill Briefing entitled, Meeting the
Needs of the Whole Patient in Cancer Care
. This standing-room only meeting was attended by Hill staff, consumer advocacy organizations, professional societies, and the general public.  The group was welcomed by Congresswoman Lois Capps and Congressman Todd Akin who reminded everyone about the life-changing nature
of a cancer diagnosis and just how important it is to address a person’s
psychosocial needs with the same intensity as a person’s biomedical needs.  Congresswoman Sue Myrick also spent time addressing the group by applauding the work being done on this topic and encouraging more.  Finally, Congresswoman
Sheila Jackson Lee closed the Briefing with her comment, “I am a strong supporter of your work.  Let us commit to sitting together to further this mission.”

I would be remiss if I did not mention a little about our panel!  In general, they are the people truly leading this movement.  They are the people most of us would pay handsomely to hear speak.  They are the people who have dedicated their
lives and careers to this mission.  We were fortunate to have 6 of these leaders share their thoughts with us.  It was a truly humbling experience and one that will not be soon forgotten.  I would like to offer a heartfelt thanks to Dr. Sharyl Nass from the Institute of
Medicine, Dr. Barbara Andersen from The Ohio State University, Dr. Lidia
Schapira from Harvard Medical School and Massachusetts General Hospital Cancer
Center, Dr. Daniel McKellar from the American College of Surgeons Commission on
Cancer, Ms. Jan Paul a “RP” (Real Person, as she put it), and our own Kim
Thiboldeaux who moderated the panel.

Today was a day of reflection, study, and a very meaningful
step into the future – so that no one has to face cancer alone.

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What the heck is Neutropenia?

Neutropenia (n): “granulocyte disorder characterized by an abnormally low number of neutrophils, the most important type of white blood cell“.(Wikipedia)  White blood cell counts can be determined by a simple blood test.

Anyone undergoing cancer treatments will most likely experience some level of neutropenia at some point.  You see, white blood cells help our bodies fight against infection.  Cancer treatments often times lower the number of white blood cells in our bodies thus making it harder for our bodies to ward off infection.

Here’s the dealio (as my daughter always says)

An infection in people with cancer is an emergency.  In fact, infection can lead to hospitalization and even become life-threatening if not attended to so follow the advice below…

1.  Call your doctor right away if you have a fever 100.4 or higher.   This could be a sign of infection.  Don’t automatically take tylenol or aspirin unless your doctor advises you to do so, as these meds can mask what’s really going on.

2.  Find out from your doctor when your white blood cell count will be the lowest as this is when you are at greatest risk of infection. During this time, take precautions like avoiding crowds or people with colds; washing hands often; wearing protective gloves when handling raw meats, gardening or cleaning up after pets.  Make sure that all food are properly handled, washed & thoroughly cooked.  Our doctors even advised Alan to avoid raw vegetables during “his time of the month” as we called it.  And we even asked our friends to stay away if they weren’t feeling well or have a cold.

3.  If you have to go the emergency room, it’s important to tell the person checking you in that you have cancer and are receiving chemotherapy.  If you have an infection, you should NOT sit in the waiting room for a long period of time with other sick people.

4.  Look into acupuncture & tai chi… there is scientific data available that these modalities can have a help stimulate white blood counts.  (thanks Darian, amazing naturopath at Cancer Treatment Centers of America for sharing this.)

Remember, an infection in people with cancer is an emergency.  It’s best to avoid any situation that increases your risk of infection.  Also know that if your treatment schedule has to be postponed by a few days because you are neutropenic, don’t worry.  Talk to your doctor.  I’ve always been told that a few days here or there won’t make a difference in the overall success of treatment.

Posted in Cancer Type, Guest Blogger: Robyn Stoller, Living with Cancer | Leave a comment