Awesome Cancer Survivor

Thinking Pink and Seeing Red

I used to love October. The changing of the seasons, the foliage in New England, the warm autumn days and cool nights. Sitting by the fireplace and seeing wonderful shades of oranges, reds, and yellows on the trees outside. But these days, this month is all about pink.

For awhile, I thought I stood alone in my frustration with October's handover to breast cancer awareness and all things pink. I'm realizing there's more to the pink backlash than I first assumed. Check out some incredible articles on breast cancer awareness month, pink ribbons, and marketing ploys gone wrong.

Those pink products you assume are helping cancer research? Not so fast... - TwinCities.com by Allison Kaplan

Great infromation -- "The "Think Before You Pink" campaign encourages consumers to ask questions before buying something with a pink ribbon: How much money from the purchase goes toward the cause? Where does it go? Is there a cap on donations? What is the company doing to make sure its products aren't actually contributing to the breast cancer epidemic?"

 

Pink Ribbon Fatigue - New York Times by Barron H. Lerner, M.D.

Great quote from this article --- "It is great to celebrate one’s survivorship from breast cancer, but it would be better not to have to be a survivor in the first place."

Thinking Pink Hasn't Helped Find Causes of Breast Cancer - US News and World Report by Deborah Kotz

I think this quote from this article says it all: "Breast cancer surgeon Susan Love expressed these same negative sentiments to me. She recently published the 20th-anniversary edition of her best-selling Dr. Susan Love's Breast Book. It's much thicker than it used to be, due to bulked-up chapters with new information on the science of breast cancer and the wider assortment of treatments. But, she tells me, the chapters on causes and prevention of the disease haven't changed that much over the past two decades. "There's frustration out there that we don't know more," she says. "We're wearing pink, walking and running to raise money for research, God knows we're aware, and yet we still don't really have a clue what causes this disease.""

 

If Dr. Susan Love is frustrated -- everyone should be frustrated. Think before you Pink!

 

As Health Activists, how do we see past the pink fatigue and make sure the message of awareness, education, and treatment gets out to the people who need it most? Let me know your thoughts! Join the conversation on WEGO Health today.

Challenge for October 2010

Do we really need more pink?

What health conditions or causes are being being overlooked thanks to the breast cancer awareness wave?

We've hit the point of diminishing returns for breast cancer awareness. One more dollar or pink ribbon for awareness will simply NOT make a difference at this point. The airwaves are saturated. Breast Cancer groups fight over awareness, screening, and treatment options, all while other diseases quietly march on, claiming more lives.

There's too much pink.

 With the lack of funds for other diseases and conditions, and the lack of a marketing machine that accompanies everything in the breast cancer space, how do others rise above and get their messages out to the general public? What disease or conditions are suffering from the lack of attention and support?

For the month of October - I challenge you to post about a rarely discussed health condition.

Need some examples? Let's talk about:

HCV

Addison's Disease

Lupus

Schizophrenia

Krabbe Disease

Better yet, visit the National Organization for Rare Disorders and select a rare disease to learn about and share that information with a friend. Are you up for the challenge? Leave me a comment!

Time for more Leukemia and Lymphoma Advocacy!

Time for more Leukemia and Lymphoma Advocacy!

Another email from the LLS:

Act Now - Urge Congress to Recognize Blood Cancer Awareness Month
Your help is needed to raise awareness for blood cancers! The Leukemia & Lymphoma Society is asking every advocate to write or call their U.S. Representative and urge them to co-sponsor a Congressional resolution (H.RES. 1433) designating September 2010 as Blood Cancer Awareness Month.

Congress has returned from recess and the sponsors of the resolution are making a strong push with their colleagues to co-sponsor the resolution. We need everyone whose life has been affected by blood cancers to join them and urge Congress to recognize Blood Cancer Awareness Month!

We need 100 co-sponsors for the resolution to gain consideration by the House. We currently have 59 co-sponsors, and your representative is NOT yet one of them! Please call the Congressional switchboard at (202) 225-3121, ask to speak to your representative's office, and ask that they become a co-sponsor of House Resolution 1433, naming September 2010 Blood Cancer Awareness Month, or visit LLS's Legislative Action Center to send them an email.

Remember that every phone call and letter counts, so be sure to send this message on to your friends, loved ones and other members of the blood cancer community. If you need help finding out who your representative is, please visit LLS's Legislator Search tool here.

If you choose to call your member's office, here are a few tips and talking points:

1) Ask to speak with a staff member or leave a message for your member of Congress.
2) Introduce yourself as a constituent, explain what the blood cancers are, and briefly tell your/ your loved one's story about living with the disease.
3) Explain that Representatives Walter Jones and Betsy Markey have introduced House Resolution 1433, which would designate September of 2010 as Blood Cancer Awareness Month.
4) Ask them to contact Representative Jones' or Markey's office and become a co-sponsor of House Resolution 1433.
5) Thank them for their time and ask them to advise you of the action they take in response to your request (leave your contact information).

Very simple way to be a cancer activist! Take the time to help out today.

Thanks!!

 

Let's pass this resolution! National Blood Cancer Awareness Month Resolution

Hey everyone, I just received an email from the Leukemia and Lymphoma Society.  We have an opportunity to help pass a congressional resolution to make September 2010 Blood Cancer Awareness month.  Move over breast cancer, here we come! Take a moment to review the information I received in the email - and take the time to write or call your US Representative today!!

Dear Alicia,

Your help is needed to raise awareness for blood cancers. The Leukemia & Lymphoma Society is asking every advocate to write or call their U.S. Representative and urge them to co-sponsor a Congressional resolution (H.RES. 1433) designating September 2010 as Blood Cancer Awareness Month.

The resolution, which was recently introduced in the U.S. House of Representatives by Reps. Walter Jones (R-NC) and Betsy Markey (D-CO), highlights the impact that the blood cancers have in the United States each year, and encourages greater support for blood cancer research and education.

Take Action Now!

We need 100 co-sponsors for the resolution to gain consideration by the House. Please, call the Congressional switchboard at (202) 225-3121 and ask to speak to your representative, or send them an email and ask that they become co-sponsors of the Blood Cancer Awareness Month resolution. Remember that every phone call and letter counts, so be sure to send this message on to your friends, loved ones and other members of the blood cancer community. If you need help finding out who your legislator is, please visit LLS's Legislator Search tool here.

Please act now!

Talking Points:

• Ask to speak with a staff member or leave a message for your member of Congress.
• Introduce yourself as a constituent, explain what lymphoma and the blood cancers are, and briefly tell your/ your loved one's story about living with the disease.
• Explain that Representatives Walter Jones and Betsy Markey have introduced a resolution which would designate September of 2010 as Blood Cancer Awareness Month.
• Ask them to contact Rep. Jones' or Markey's office and become a co-sponsor of the resolution.
• Thank them for their time and ask them to advise you of the action they take in response to your request (leave your contact information).

The Blue Room - Urban Farm Dinner!!!

Check it out! The next Urban Farm Dinner at the Blue Room will benefit the Breast Health Center at Tufts!

I hope you can make it!  To RSVP - click the RSVP button below and sign up on Open Table.

Can't make it?  DONATE!! Click the donate button to go to the special First Giving page to make your donation today. SEE YOU SOON!

Urban Farm Dinner To benefit The Breast Health Center at Tufts Medical Center. Wednesday, June 30th, 6pm @ The Blue Room Join us as we replicate our One Long Table farm dinners "urban" style on our breezy outdoor patio.  We'll still be celebrating all that is good, whole + local fromBay End Farm, but this time we're working with The Staley Foundation and all proceeds will benefit the patients and families of The Breast Health Center. 4 courses paired with organic wines $75 MINIMUM DONATION the local farm-inspired menu will be determined that day for questions or FAQs click here 100% of your donation supports the patients and families of the Breast Health Center at Tufts Medical Center.  What does that mean?  We're talking support groups, prosthesis, wigs, transportation, peace of mind... to RESERVE             to DONATE to our cause            FORWARD to a Friend COMING OFF THE FARM... lettuces, peas, pea tendrils arugula, spinach, marjoram SWISS CHARD, GARLIC SCAPES WINES TO ENJOY... lageder lagrein rosé gysler scheurebe halbtrocken GIRASOLE VINEYARDS CHARDONNAY one kendall square cambridge, ma 02139  617.494.9034   monday–thursday 5:30–10pm, friday–saturday 5:30pm–11pm, sunday brunch 11am–2:30pm dinner 5:30–9pm unsubscribe

Buckets for the Cure?

Well, KFC has me fired up tonight.  What do you think of their new campaign - "Buckets for the Cure?"  Does anyone else think that a fast food chain that sells a pink bucket of fried chicken might be a little off the mark for a breast cancer awareness and donation campaign?  While I applaud KFC for the effort, I'd love to speak with CEO Roger Eaton about this latest promotion.

This is would I'd like to see from KFC:

1. For every "healthy" sandwich or salad option that KFC sells, they make a donation to KOMEN.
2. Don't make donations for buckets of fried chicken - donate monies when customers select the best food choices on the menu.
3. Don't launch the Double Down Chicken Sandwich at the same time you're trying to become a bastion of "cancer awareness." [Note to KFC:  If that sandwich only has 540 calories, then consider me a rocket scientist.  NO WAY]
4. Educational materials printed on the KFC bucket and handed out with all orders during this campaign.

As for Komen, I'm surprised they'd mix the Buckets for the Cure with the very successful Race for the Cure brand they've worked on for years.  Why would they mix fried chicken with running/health/exercise/energy for the sake of breast cancer awareness?

KFC is trying to make the largest one time donation to Susan G. Komen in a splashy promotional campaign.  Big deal.  I'm not impressed. 

With research showing possible connections between increased breast cancer risk and high fat diets (that's listed right on Komen's site!!), why would Komen join forces with KFC? There's only one reason --- money, and that's green.  I think Komen forgot all about their signature color: pink.

What do you think?  Is this an appropriate campaign?  Let me know!

There a great conversation rolling on over on WEGO Health!  Join me there and leave your comments!

The New Face of Cancer

Over the weekend, I got a note from Susan with some questions about head/neck/oral cancers. I started digging around on the 'net, looking for information on head, neck, and throat cancers. Any and every search combination of those cancer terms kept returning a familiar name: Roger Ebert.

I'm sure most people know Roger Ebert - one of the best film critics and long time contributor to the Chicago Sun Times. As a kid, I remember watching "Siskel and Ebert" on TV and thinking they had the BEST JOBS in the world - watch movies, eat popcorn, write a movie review! What could be better than that? I'm sure I was caught up with the 'watching' and 'eating' part of the movie review. Being a film critic is definitely not easy; countless hours go into researching, watching, and writing about a movie. His career has spanned decades and he's reviewed thousands upon thousands of movies. He's dedicated to his craft and has had a phenomenal impact on the movie industry.

Ebert's struggle with cancer started in 2002 when he was diagnosed with thyroid cancer. I vaguely remember hearing the news back then. I thought it was sad the Ebert would have to deal with cancer so soon after Gene Siskel's death in 1999 from brain cancer. I lost track of the severity of his illness after 2002. I was surprised to read he needed additional surgery for cancer in his salivary glands in 2003. Cancer invaded his right jaw bone requiring more surgery in 2006. Part of his jaw bone was removed during this surgery causing considerable disfiguration and the loss of his voice. Over the past few years, he's had additional operations in the attempt to restore his voice. He's also lost his ability to eat or drink, and takes all his nourishment through a feeding tube... Yet, through it all, he continues to review movies.

Ebert's always had a way of making me see things in films I'd have missed if I hadn't read his review. His commentary on the lighting, the musical score, the dialog, the bit actors always brings another dimension to a film. There were times when I'd read a review and I'd run right out to watch the movie again, just to "see" what he's written about in such an eloquent and vivid way. He has a way of critiquing a film that peels back layer after layer - you begin to experience hidden emotions and feelings that are right there in the open, on the big screen.

Esquire Magazine just published a lengthy article on Ebert. As a cancer survivor, I struggled to read the entire article. Cancer has a way of striking your soul and haunting you at unexpected times. Reading about Ebert stirred long lost memories and feelings. I finished the Esquire article, sat back on the couch, turned off my computer and started to cry. My heart ached for the man, a bittersweet ache in a way.

I hadn't seen a recent picture of Ebert until I read the article. You might look at his picture and see horror, sadness, pain, fear, disgust, anger..... You might look away. It's not easy to look at a picture of a man missing part of his jaw.

I see courage, tenacity, hope, strength, and beauty. I see cancer but I also see a man, standing tall after years of physical struggles and illness. I see a glimmer of happiness in his eyes. Maybe that's what I've learned from Roger Ebert, the film critic - I've learned to look at Roger Ebert, the cancer survivor, and see beauty and hope. Cancer has a face - it's Roger Ebert.

In an interview in 2007, when Ebert was asked what he thought the paparazzi would make of his post-surgical look, he replied, "Frankly my dear, I don't give a damn." I think that says it all.

April Fool's Day - 2004

When I was a kid, I loved April Fool's day. Pranks and hi-jinks were commonplace and all were in good fun. My small hometown in Western NY adopted a Canadian tradition to celebrate April Fool's day called possion d'Avril - the fish of April. The custom is to try to place a paper fish on the back of a schoolmate or teacher. I remember the plots and subplots my classmates would conjure up trying to figure out how to attach a fish to the back of our french teacher, or sneak up on the Principal. We'd always have alot of laughs and a great time on this day.

The fun and games of April Fool's day came to end for me on April 1, 2004. That's the date I had my mammogram that uncovered my first bout of breast cancer. When the technician came back into the mammography room to request a second set of films, I hoped she was joking. When she returned 10 minutes later for a third set, my stomach sank. My gut instinct told me it was cancer, and unfortunately I was right. April 1, 2004 also marks the day that I started my journey as a health activist. I'm not sure I even knew it at the time, but my experiences over the next few years would provide the foundation for where I am today.

My first step as a health activist was donating all my scans to the Museum of Science in Boston, MA. My friend Andrea was working on project to showcase the importance of cancer screenings and the five main kinds of diagnostic imaging: X-Ray, PET Scans, MRIs, Ultrasounds, and CT Scans. The exhibit is called "Beyond the X-Ray" and it's on permanent display at the MOS.

When no one stepped forward to donate their scans, she called me. Without hesistation, I said yes. I called Tufts Medical Center and made arrangements to get copies of every single film I ever had there. The medical librarian was more than happy to help me. Now, my infamous April Fool's Day mammogram films live on at the MOS. I guess you can say the rest is history. The activist spark was lit.

Here's the film:

6 years later, I've dealt with two bouts of breast cancer and feel stronger than ever. If you see me today, be on guard. I might just give you a big bear hug and hit you with a paper fish. When I'm healthy, I'm very, very happy - so, watch out!

Keeping Cancer undercover

I just finished reading a series of articles about Mo Mowlam. I realize that many people outside the UK might not recognize the name, so I'll take a moment to provide an overview: Marjorie "Mo" Mowlam was a member of the British Parliament from 1987 to 2001. In 1997, she was the first woman appointed to the position of Secretary of State of Northern Ireland and was tasked with overseeing and facilitating the Peace Talks in Ireland. She was a very popular political figure and was involved with the Good Friday Peace Agreement talks in early 1999. By 2000, she left the Secretary of State position and returned to the Cabinet. She retired from politics in 2001 and passed away in 2005.

Why the history lesson?

I'm interested in Mowlam's story because five months before she was appointed to the Secretary of State position in 1997, she announced she had a benign brain tumor. Benign as in "not cancerous, highly treatable, nothing to see here" kind of tumor. On January 17th, 2010, the news broke in the UK outlining the extent of Mowlam's illness. The article, "How Mo Mowlam mislead Tony Blair," outlines how Mowlam hid her terminal (malignant) cancer diagnosis from Tony Blair and the UK, going against the advice of her doctor. Only her husband and doctor knew how sick she really was as she accepted her position as Secretary of State. This news has caused a stir in the UK.

Secretly Courageous or Calculated Liar?

The range of judgments levied at Mowlam have been all over the map. To some, she's a liar. To others, she's courageous. Still others think she was reckless and foolish, and could have seriously jeopardized the 1999 peace talks. The debate has started in the UK: Did Mo have the right to confidentiality? She clearly knew what she was doing. She insisted her doctor keep private the severity of her cancer. He husband and medical team were the only ones that knew the extent and terminal nature of her illness. Her doctor has finally expressed his frustration dealing with the professional dilemma he found himself in with Mowlam. As her doctor, he was ethically bound to honor his patient's request. In his case, his decision to remain quiet could have affected national security. Forutnately, Mowlam's health never affected her job as the Secretary. I'm sure this very unique case will be subject to much debate in the coming weeks. If I was faced with this situation, I'm not sure what I'd do. In my own case, it took some time for me to accept my cancer diagnosis and build a confident life as a cancer survivor. Now, my cancer story is well known. Mowlam's situation is very unusual but does expose some concerns that all cancer survivors will face at some point: what information do you share and how do you share it so it won't negatively impact relationships, a career, or your life in general?

To share or not to share....

To address the question of whether or not a cancer survivor should disclose a new illness or diagnosis, the American Cancer Society developed a great outline on Talking About Cancer. Cancer And Careers provide a great deal of information on discussing a cancer diagnosis with employers. I firmly believe that honesty is the best policy. I've always been open about my cancer diagnoses and treatments. However, I know there are situations where this might not be the best advice. When and why would you tell someone to hid an illness? I'd love to hear your thoughts on this subject.

Have you ever hid a significant health issue from others? Do you know someone who hasn't publicly disclosed an illness for fear of job loss or career impacts? How do you think this story impacts the cancer community? What about other health communities? I'd love to hear your thoughts.

P.S. A few people have emailed to ask if I was a fan of Mowlam's. YES! Absolutely. I think she was in a very difficult position. She made a decision to move forward the best way she could think of when she was diagnosed. We might not all agree that this was the best course of action, but we should never judge or diminish another's decisions. I think Mo was a very strong woman and made a great impact on UK politics.

Lessons Learned - Facebook, Bra Colors, and Activism

I've had some time to think about the Facebook Bra Meme that made its way around the web in January. Amanda's discussion on WEGO Health on the topic generated a number of comments and opinions about the subject. I've read numerous articles about the event - some consider it a joke gone wrong, others speculate a breast cancer foundation was behind it, and others felt it was no big deal.

I received more emails about this topic than I've received in quite some time. Even after taking some time to think about it, I'm still a little angry. I'm not alone. Here's some feedback on the meme:
My Bra: color me Furious
Bare your bra for breast cancer?

Do Bra Colors on FB Serve a Purpose?

Sexy Breast Cancer Ads: Provocative or Patronizing?

A few things I learned from the Facebook wardrobe malfunction:

- Awareness does not mean action
- It's possible to have too much awareness and not enough action
- There seems to be a growing backlash against the breast cancer movement

but, I have to say.... the number one thing I learned from the FB meme:

Awareness doesn't necessarily translate into Activism

Welcome to the new world of Slacktivism - the Lazy Man's Activism. I first read about "slacktivism" in The brave new world of Slacktivism. I think it accurately describes what occurred with the Face Book Meme. A status update takes only a few seconds and has the appearance of "awareness."

As Health Activists, we need to make sure that activism remains just that - ACTIVE.

Check out the great conversations on WEGO Heatlh - see Amy's challenge on "Put the Active in Activist" and Janeen's post "Let's Talk about Activism." These are great articles on how to keep a community active and engaged in a cause.

Have you heard about slacktivism? What are you doing in your health community to make sure activism keeps moving?  Join the conversation on WEGO Health today!