Awesome Cancer Survivor

2013: The Year of the Awesome Cancer Survivor!

We're getting ready for a new year!  Starting in 2013, we'll be honoring a special Awesome Cancer Survivor every month.  Do you have a special cancer survivor that you'd like to nominate?  Take the time to nominate your favorite cancer survivor now!  After reviewing the 1000s of emails we receive here at awesomecancersurvivor.com, we recognized it's time to honor you!

Are you ready to celebrate your survivorship?  Share your story with us, we want to make sure awesome cancer survivors are highlighted every month!

Each month, a special blog post will be dedicated to the Awesome Cancer Survivor of the Month.  Since they are so good with promotional products, to honor our special cancer survivors, they will receive the official Awesome Cancer Survivor T-Shirt made by QLP.  They will also receive an official Awesome Cancer Survivor coffee mug made by QLP, as well as a selection from our bookstore.  To round out the award basket, the Awesome Cancer Survivor of the Month will also receive our custom baseball hat from QLP.

We're finalizing the details of our new logo and will be announcing our new look on January 1, 2013!  Please join us as we welcome the new year with an exciting new look.  T-shirts and other Awesome Cancer Survivor merchandise will be available for sale in our new store.  Want a sneak peak at the new logo?  Sign up for our newsletter today! 

To nominate an Awesome Cancer Survivor, visit our new nomination center!

Happy Holidays!  Thank you for making 2012 a very succesful year for us.

Calling all Breast Cancer Survivors! Paid Survey Opportunity

A market research company has reached out to my foundation, The Staley Foundation, to help gain some insight regarding breast cancer treatment therapies. More specifically, they are interested in hearing from breast cancer survivors that are taking Generic Anastrozole.

The survey is for women age 39 or older that are currently taking generic Anastrozole (arimidex).

I recognize that dealing with cancer can be a difficult experience and that you may not want to participate in market research. Please feel free to disregard this request. 

If you are willing to share your experience, you will, of course, be compensated for your time. The interview is conducted via an online survey and will last approximately 10-12 minutes. If you qualify and complete the survey, you will be mailed an honorarium of $50 within the next 30 days.


Please contact me directly at [email protected] if you'd like to participate and I can send you the survey link.

Please note this study is only open for a very short period of time and will close on December 16th. If you have any questions at all, please feel free to contact me directly. Thanks in advance for your time and consideration!

BCSM In the News!

Deanna Attai and I were recently interviewed by the Carroll County Times for their annual breast cancer awareness addition.  Make sure to stop by and check out the nice interview article:

Different corners of the world, all united through the Internet

Thank you, Kelcie Pegher!

 

Lawsuits for the Cure: From the Archives

The following post was originally posted on December 9, 2010.  Almost 2 years ago.  In honor of Breast Cancer Awareness Month, I've pulled this post from the archives to share with you.  We still have a great deal of work to do - the Pink Ribbon has fractured the breast cancer community.  It's time to work as a collaborative community, ditch the cause marketing campaigns, and refocus on our energies on the real meaning of the pink ribbon: Hope.

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As a breast cancer survivor, nothing's more infuriating than reading a story on how the Susan G. Komen Foundation actively pursues lawsuits against smaller foundations and individuals using the term "for the cure" in events or promotional materials. "Kites for the Cure". "Dancing for the Cure," "Dog Parade for the Cure." Komen's got them on their radar. Honestly, don't we ALL have better things to do... like find a CURE for cancer instead of chasing after small time charities?

You can read all about the lawsuits and actions of Susan G. Komen in the following articles:

Charity Brawl: Nonprofits aren't so generous when a name's at stake

Susan G. Komen For the Cure Wages Turf War over Trademark Slogan

Komen Lawsuit points out charity branding issues

The point that I take exception with in all these articles is how Komen defends these lawsuits. Komen's lawyers state that: "The charity views the lawsuits as responsible stewardship of our donor's funds.” Oh really? I haven't donated to Komen in a long time. However, if I was to donate again, I'd certainly hope that my funds were directed to more research, not lawsuits. That got me thinking about the total cost of the lawsuits that Komen's currently involved in. I dug a little deeper and pulled out Komen's annual report from 2009 [pdf]. I was hoping to find a line item in their annual report called "lawsuits" or "lawyer's fees". No such luck. However, I found some other interesting points.

Here's a quick review for 2009:

Komen took in $331,328,414 in donations and revenues.
Komen's General Administration costs, in 2009, were $37,148,000.
Their total fundraising costs across all programs were $29,496,000.

In the same year, the total amount given out, or allocated to:

• Research was $70,147,000
• Educational programs were $135,529,000
• Screening was $39,653,000, and
• Treatment assistance was $22,330,000.

Let's stop right here for a moment and reflect.

A organization that is actively pursuing other small charities over the use of the term "for the cure" does NOT spend the majority of their own funds towards RESEARCH FOR A CURE.

In 2009, according to Komen's Audited Financial Statements[links to PDF], the organization awarded $59,179,051 in research grants out of the total $70,147,000 that makes up the reseach figure. The remaining amount went to fees, travel, salaries, and other costs of business.

So, out of the $331,328,414 raised by public support and revenues, only $59,179,051 went to RESEARCH FOR A CURE. Only 17% of the donations received and revenue earned by Komen in 2009 went to "finding a cure." I find it very hard to believe that Komen's lawyers can justify their lawsuits by claiming they are acting as stewards for their donors' monies. For Komen to lay claim to the term "for the cure" or any variation of "the cure," shouldn't they need to show a greater effort towards funding the research required to find "THE CURE?"

135 million dollars for educational programs will certainly help educate men and women about breast cancer and treatment options, but will not help "cure" cancer.

39 million dollars for screening programs will certainly help men and women receive valuable services and help detect cancers much sooner, but will not help "cure" cancer.

22 million dollars for treatment assistance will certainly help many men and women receive badly needed treatment, medication, surgeries, and support, but will not help "cure" cancer.

Komen needs to reevaluate its mission and branding to be more in line with "curing cancer." It needs to establish its core functions to promote and facilitate efforts "for the cure" if they want to continue to chase down small charities that dare to use that phrase. For the cure, not for the lawsuits.

Health Activists: Are lawsuits like the ones Komen brings about good for the non-profit community? Are we doing enough as donors to make sure our monies are used in the best way? Is a cure for cancer just a dream? Are you surprised by this information? Let's talk!

p.s. Check out page 5 of the audited financial reports. Postage, Bank Fees, and Telephone accounted for $10,233,833 in expenses. I hope they at least bought the breast cancer stamps.

Travel Grant Consideration for Kansas City!

To:   The Society of Participatory Medicine

Please accept this blog post as my application for a travel scholarship to attend the upcoming Partnership with Patients Summit in Kansas City, MO on September 21st.  

I would be honored to attend this powerhouse event in Kansas City.  To me, this is the event of the year that I need to attend.  With the incredible speakers on tap to present, I simply cannot miss this event.  The opportunity to learn from the leaders of the epatient movement, including Regina Holliday, Dave deBronkhart, Casey Quinlan, and Trisha Torrey all at the same time is a dream come true!  I have followed so many of these key pople for so long on twitter or Facebook.

While I've had the chance to meet some of the folks that will be attending, the chance to finally meet so many of them at once and  have the chance to network with other members of the Society for Participatory Medicine is truly a once in a life time chance.  I know I'll come away from this event, with a renewed passion and drive that will allow me to take my work to the next level for these wonderful organizations.

As a three time, 20+ year cancer survivor, I'm truly a "professional patient."  As a member of the Patient Family Advisory Council at Tufts Medical Center, I'm working hard to make sure the patient voice is heard, recognized, and respected as a key person in a healthcare team.

With my work in social media to develop virtual support communities like #BCSM (Breast Cancer Social Media) with a fellow breast cancer surivor, Jody Schoger,  and Dr. Deanna Attai, I can certinaly share everything I've learned on how to build vibrant communities working to solve critical healthcare issues from the patient perspective.  

As Community Manager at the HIT Community, I'll also use my enginering background to help make sense of the work currently under way in the health information technology industry.  My goal is to make sure that patients understand how health infomation technology can ultimately improve their health outcome.  Understanding the importance of electronic health reacords is very important to me.   Networking with individuals while in Kansas will help me expand on a successful series I've started collecting EHR Journeys Stories from physicians and healthcare providers.  Meeting more people that are willing to share their stories is main reason why I'd be honored to attend.

Everything I learn at the Partnerships with Patients event will be put to immedidate use, throughing blogging about the experience, to telling my fellow PFAC council members about the journey.  While some might think this is "just a travel scholoarship," I say it's a grant to attend, meet, hug, and connect with some of the most influential patient advocates working very hard to improve healthcare for patients around the world.  I'd be honored to be included in this once-in-a-lifetime summit.

Thank you for the opportunity to submit an entry for your spconsideration.  

Sincerely,

Alicia C. Staley

@stales

What's your Cancer Age?

Have you seen the Real Age calculators? Basically, it seems that we can calculate our real age by factoring in things like smoking, diet, exercise and medical history.  The goal is to keep your real age as low as possible.  Apparently, staying "young" is the key to good health and longevity.

Well, I've been thinking about this real age test, and feel it really does Awesome Cancer Survivors a serious injustice.  We get better as we age, not as we force our "real age" to a more youthful number.  As cancer survivors, each passing year adds to our collective strength and overall health.  In sharp contrast to the Real Age, a higher Cancer Age is a true status symbol!  To address the Real Age test's shortfalls, I'm rolling out a new test.  It's called the Cancer Age Assessment^TM. 

This assessment will reward cancer survivors with their true Cancer Age!  Your Cancer Age reflects the pain, anguish, and sheer guts it took for you to battle cancer and continue on as an Awesome Cancer Survivor.  As awesome cancer survivors, we've all experienced more in our lives than most people.  Your Cancer Age lets everyone know that you are a super hero! 

Take the Assessment!

Write down your Current Age:    ________________________

If you've never had cancer, subtract your current age from your current age.  You're at 0. Please stop here. Your cancer age is 0.  There are no prizes for you.

If you've had cancer, please continue.

Add 5 to your current age for each cancer diagnosis. 

If you were diagnosed with Cancer before 18, add 100.

If you were diagnosed with Cancer between 18 and 50, add 10.

If you were diagnosed with Cancer after 50, add 5.

If you had Chemo, add 25.

If you still remember the names of all your chemo drugs, add 10.

If you lost your hair going through chemo, add 20.

If you had Radiation, add 20.

If you had surgery for cancer treatment, add 10.

If your oncologist attended your wedding, add 20.

If your pharmacy is on speed dial, add 5.

If you like MRIs, subtract 20.

If you have copies of all your medical records, up to date, add 25.

If you don't have any of your medical records, subtract 10.

If your primary care physician takes your calls on the first ring, add 10.

If you've redecorated the oncology waiting room because it was looking a little drab, add 50.

Results:

Add up your score and arrive at your Cancer Age^TM.

1-50 - Congratulations, you're an Awesome Cancer Survivor! Welcome to the club.  You're on a path to becoming a truly empowered survivor.

51 - 1000 - WOW! Not only are you an Awesome Cancer Survivor, you're a true old soul. You're a sherpa, guide, expert, and treasured resource for other cancer survivors.  You've battled cancer with grace, wit, charm, and alot of grit and perserverance.  You have an ability to reflect on the past and see great possibilities for the future.  You live each moment to the fullest and you're making sure that everyone around you lives the same way.  You see beauty in all things and truly live a life with a happiness that aches.  Without you, the cancer survivorship landscape would be a lonely place.  Thank you for all you do! I'd climb a mountain with you!

  

1000 + - Your score is off the charts! Please contact me immediately, I think there's a clinical trial out there somewhere specifically for you. Seriously. Call me right now!

Proudly display your Cancer Age on your site!  Want the Cancer Age badge - let me know.  Leave a comment and tell me your Cancer Age!

 

 

 

 

Winning the War on Cancer?

As a cancer survivor, I'm surprised at the number of times people ask, "Are we winning the war on Cancer?"

Advances made in cancer research and treatments are making a difference, but I still think there's a long way to go. It's not a yes or no question and unfortunately most people immediately assume failure when the answer isn't a definitive "YES." I know we're making great strides in the war on cancer - I'm living proof.

In a recent report by US News & World Report, it seems the "war on cancer" gets mixed reviews. Dr. Samuel Broder wrote an excellent article outlining the progress and pitfalls in: "Health Advice: Why is our Progress against Cancer so slow?" The mortality rates across the board have decreased since the mid-90's, with one exception: rates from women's lung cancers have remained stable. Based on numbers alone, one could surmise we are "winning the war," however progress is still viewed with a sense of pessimism and defeatism.

I learned a very important lesson from this piece:

Perhaps we should reframe the way we view the "war on cancer."

Like Dr. Broder suggests, the discourse is inflammatory and simplistic; it leads us to believe it's a win or lose situation. It's much more complicated than that. Progress is incremental at best, and we are, indeed, making progress. However, the cycle of research, clinical trials, and implementation is much longer in actuality. It take years to find drugs that help address one small part of the cancer crisis. The "war on cancer" is essentially a series of baby steps. Research, trial, treat.... rinse and repeat. Victory is still not in our sights, but we're getting closer.

Years ago, I stopped referring to the search for more cancer treatments as the "War on Cancer." I know from experience there's still much to do. As a cancer activist, I'm hoping the research community uncovers more treatments in the years ahead. Until then, it's up to us to do as much as we can to encourage and support those dealing with the everyday realities of a cancer diagnosis.

The article suggests a few ways we can all help make advances in the cancer community:
- Help expand research initiatives
- Encourage more private businesses to engage in this community
- Encourage cross-discipline research
- individualize and maximize treatments options
- Apply today's knowledge and experiences NOW

and finally:
- Build a better community: focus on community service and outreach

As cancer activists, we can all work to build a better community and expand our reach to all populations dealing with cancer. Let's work on this together!

Do you find that members of your community refer to the "War on Cancer"? How do you feel about advances in cancer research and treatments? Are we making a difference?
What's the best way to reframe this conversation?
How can you reach out to more people in the cancer community to help reinforce the progress?

Let me know what you think!
To discuss, join me over on WEGOHealth.com!!!

Breast Cancer and You - Nutrition Seminar

Community Servings is hosting its 4th annual breast cancer nutrition seminar on Saturday, October 3rd at the Tufts Medical Center - USDA Human Nutrition Research Center. I'm attending the event and looking forward to learning more about wellness and nutrition. I think it will be a great opportunity to meet other Breast Cancer Survivors in the Boston area.  If you're interested in attending the seminar, please check out the event details!

You can also view the invitation flyer here.

I hope to see you there.

-acs

My cancer by the numbers

I'm an engineer by education, so sometimes I think it's easier to explain my cancer experience by the numbers: 

I've had Hodgkin's disease once, Breast Cancer twice.  I was a 20 year old college sophomore, fighting my way through cancer for the 1st time.  To diagnose the Hodgkin's, I had every major organ in my abdominal region biopsied, a section of my hip removed, my spleen removed, and for good measure, I let the doctors take out my appendix too.   To treat the Hodgkin’s, I had 18 weeks of radiation and 9 rounds of chemo therapy.  My chemo regime had 4 drugs.    I still have 21 little blue radiation tattoos used to mark the radiation field on my body.  I lost all my hair and lost a ton of weight.  It took close to 3 years to battle through the Hodgkin’s.   

At the age of 33, I was diagnosed with breast cancer for the first time.   I had one lumpectomy and 5 intense days of Mammosite Radiation.  For two years, I dealt with horrific side effects from “the anticancer drug” Tamoxifen – dry eyes, night sweats, bone pain, weight gain, migraines, insomnia, fevers… Sometimes, the cure is worse than the disease.  Last November, I was diagnosed with breast cancer for a second time and I opted for major surgery - a double mastectomy.  I had my thyroid removed during that surgery too.  In total, I had 3 separate courses of radiation, 1 course of chemo, 8 major surgeries, and 1 bone marrow biopsy.  Whew…

I'm walking proof that super glue and duct tape works wonders.
But in case you want to know... I can still hit a golf ball 250 yards on a good day... bad day, maybe 235.