How You Live

Yes, it’s true. Hannah Powell-Auslam of Fullerton, California was recently diagnosed with an invasive ductal carcinoma at Stage IIA — “a type of cancer that oncologists say has rarely, if ever, been found in a girl of Hannah’s age.”  Mastectomy and all.  What?!  Heart-breaking.

Read this ABC News article to learn more about Hannah’s story. 

I recently heard about a 13 year old in Dallas who was diagnosed with breast cancer.  It seems that i routinely learn about other young women battling a disease that used to be limited to women over 40. 

If you know of a young woman facing this scenario, visit Bright Pink for resources and support.

Two questions:

1. How do you feel about insurance companies limiting coverage for mammograms to women over 40?

2. Why do you think that in recent years, very young women are being diagnosed with breast cancer?

 

I. Love. Camp. I was born to be a camper. And when I out-grew the camper status, I became a counselor and have never missed an opportunity to eat smores and sing campfire songs!

You know what’s better than regular summer camp? Cancer camp!  It’s true… it’s so like being a kid again and enough TLC to last until next summer’s cancer camp.  

There are so many great programs out there for young adult cancer fighters and survivors (google is a fabulous thing). I just learned about another and wanted to share it with you: Camp Mak-A-Dream in Missoula, Montana. Like most cancer retreats and camps, it’s FREE and jam-packed with awesome activities, R&R, and incredible survivors…just like you.  And probably snacks and crafts.

The next Mak-A-Dream young adult camp is June 18-25.  Sign up quick!  

If you know about other camps/retreats, leave us a comment!

Happy Camping!

 

P.S. I also love the movie, Meatballs. Great camp movie. You won’t regret it.

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Recap: In 2007, I was diagnosed with Mediastinal Diffuse Large B-Cell Non Hodgkins Lymphoma. I was 23. [It's really just NHL, but I wanted to see if I could remember the whole name. And I did. Wahoo!]  And going back a bit further, my mom was diagnosed with Hodgkins Lymphoma in 1992.  She was 28.  [no fancy name for hers. too bad, so sad.]  In 1995, my dad was diagnosed with Hodgkins Lymphoma when he was 35 and had a recurrence in 1997.  It’s true…three people in the one family with the same, non-hereditary, non-environmentally induced disease.  Just a fluke, supposedly.

Lymphoma is the number one cancer of young adults.  Boo.  And if that’s hard for you to believe, read paragraph one. 

As  you know, I love to tell you about organizations that are making an impact in the cancer community–specifically young adults.   The Leukemia and Lymphoma Society is no exception.  In a nutshell:
“The Leukemia & Lymphoma Society (LLS) is the world’s largest voluntary health organization dedicated to funding blood cancer research, education and patient services. LLS’s mission: Cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families. Since its founding in 1949, LLS has invested more than $600 million in research specifically targeting blood cancers.”

They don’t only focus on the big picture (research and finding a cure), but they serve patients in a practical way.  For example, when I was going through treatment, the LLS sent me a reimbursement check (via the Co-Pay Assistance Program) for my out-of-pocket health insurance premiums for one year.  That was over $1000! 

Fast-forward to today, May 6, 2009: I am currently raising funds for the LLS by running in the Nike Women’s Marathon in San Fransico on October 18.  My mom and I are doing the race together through the Team in Training program.  Please consider supporting this amazing organization by contributing to our race campaign.

Donating is so easy! Just click here!  $5, $20, $100…whatever.  I’m prepared to nickle and dime this thing to the finish line!  Forward the link to my campaign website to anyone else in your world who might want to support this extremely worthy cause!  Big thanks.

You’re reading this blog and that means the world to me. Thank  you.

 

http://pages.teamintraining.org/ntx/nikesf09/sconley

Thousands of patients with leukemia and other life-threatening diseases depend on a bone marrow transplant to save their life.  And YOU could be the perfect match.  And even more exciting…it’s free! For a limited time. Naturally.  The National Marrow Donor Program is doing something really cool right now– you can join the Registry until April 30 with NO registration fee. Typically, it’s $52 for the kit. 

eight-year old Braden Allard

Let me introduce you to an amazing kid who just received a Bone Marrow Transplant.  This is Braden Allard.  He was diagnosed with leukemia in December and is in the midst of his transplant now. For some patients, their bone marrow match is someone in the family.  That was not the case for Braden.  A perfect stranger happened to be his perfect match. 

And P.S… unfortunately, if you have a history of cancer, you are unable to register. Even if you are in remission. Stupid Cancer. So for all the healthy people out there…register in honor of Braden or someone else you know with a blood cancer.  You never know when someone you love will be affected.  Just call me Debbie Downer.  

Sometimes, cancer comes with rewards. Like scholarships for college. Don’t get me wrong… nothing can redeem the yuckiness of cancer, but free money might ease the burden just a bit.

“Every cancer survivor deserves the chance to receive a college education. Yet the burden of medical debt, side effects of treatment, and limited access to financial and informational resources leaves many young adult cancer survivors with little hope of attending college.”  [CCC.org]

Let me introduce you to a super organization called CCC (Care. Commit. Change.).  CCC is an annual college scholarship program that recognizes survivors who demonstrate leadership, commitment to education, and betterment of their community.  They also provide guidance and resources in the pursuit of higher education, including an online database that contains information on thousands of national scholarships for young adult cancer survivors.

Check out the site and see what scholarships you might be eligible for!  AND… let others know about this program and the opportunity to invest in the future of young cancer survivors.

Dr. Archie Bleyer, pediatric and young adult oncologist at the St. Charles Regional Cancer Center in Bend, Oregon, has been a forerunner in advocacy for young adults with cancer.  Over the past year or two (since my diagnosis) I have come across his name many times and appreciate his insight on the issues that concern us.  Heidi Adams from Planet Cancer posted a link to this article on her Twitter and want to pass it on to you…my most valued readers.  

Enjoy this Q&A with Dr. Bleyer.

Start a campaign at your school or in your community! Use your own creativity and resources to be a part of this awesome movement April 5-11.

Under the American Recovery & Reinvestment Act of 2009, the National Institute of Health (NIH) has designated at least $200 million in FYs 2009 – 2010 for a new initiative called the NIH Challenge Grants in Science and Research. 

One of the NIH grants (up to $1 million) supports young adult cancer research.  How exciting!   Check it out:

The Biology of Cancer in Adolescents and Young Adults. A Progress Review Group, involving the NCI, the Lance Armstrong Foundation and the LIVESTRONG Young Adult Alliance, identified the need to determine if unique biological and molecular differences underlie adolescent and young adult cancer with respect to prognosis and therapeutic outcome and differentiate it from the disease in younger or older patients.  Studies are encouraged using existing tissue samples to investigate whether definitive biological and genetic differences exist in cancers in the 15-39 year age group and whether any such differences could account for the different disease outcomes experienced by this group.  Appropriate topics of investigation could include epigenetic differences, developmental influences or microenvironment changes.

“If a friend is in trouble, don’t annoy him by asking if there is anything you can do. Think up something appropriate and do it.” -Edgar Howe

Many times, when someone is in a crisis, they are not likely to reach out for help.  And if you ask, “Is there anything I can do?” the response is usually vague or uncertain for fear of being a burden.  Don’t be afraid to step in when you recognize a need.  Your efforts will be appreciated more than you know.

·         Clean. Especially things like changing sheets, dusting, mopping floors, etc.  The tough jobs that can feel overwhelming. 

·         Laundry.

·         Do grocery shopping or errands.

·         Massage gift certificate.

·         Subscription to NetFlix.

·         iTunes gift cards.

·         Drive to doctor appointments and treatments.  Hospital days can be long and wearisome, but so much more bearable with a friend.

·         Purchase Take-n-Bake meals or meal subscription from Super Suppers

·         Go for a walk or easy hike.  Fresh air + good conversation = healing

·         Magazine subscriptions. Due to medicine and exhaustion, it may be difficult to concentrate on a book, but short magazine segments are usually more enjoyable.

·         Cards.  This is especially meaningful if you live out of town and can’t easily keep in touch in person.

·         Babysit.

·         Make a brief visit to the infusion room when he/she is having treatment.  Keep in mind that the patient could be knocked out, but will love to know that you stopped by. 

·         Mow the lawn and/or plant flowers.

·         Return calls and voicemails to those wonderfully caring people who are “just checking in.”

I couldn't go out for New Year's, so the party came to me!

These are just a few suggestions.  Each individual is different and the needs of each patient and family are completely different.  The main thing is to be proactive and do something.

Don’t forget about those caring for the sick person.  The role of caregiver can be overwhelming and often under-appreciated.  Instead of only asking how the patient is doing, ask how the caregiver is doing.  Typically, they are under a lot of pressure to be strong and courageous all the time.  They would probably welcome an opportunity to share their fear and anxiety.  Offer to trade places and sit with the patient at appointments.  Bring food to the family who is waiting at the hospital.  Take the children to do something fun to take their mind of the crisis. 

The opportunities are truly endless.  Use your own skills and gifts to be a help and support. 

One final thought….be mindful about not doing too much.   A) The cancer patient needs space and probably still wants to maintain independence in most areas of life.  B) Let others share in the joy and experience of giving and serving.  Don’t steal all the jobs. J 

A dear friend visiting during a treatment.

 

Honestly, this economic stimulus makes me a bit nervous.  A lot nervous.  But I’m hopeful for one reason: President Obama made it very clear in his address last night that he believes we could cure cancer in our lifetime.  He put our money where his mouth is and increased funding for the National Institute of Health  (NIH) from $3.5 billion to $10 billion — including $1.3 billion for the National Cancer Institute.  The NIH awards grants to scientists at local universities, hospitals and research institutions in all 50 states. 

I’m thrilled at the prospect of significant advances in the worldwide effort to cure a disease that has affected millions and millions of boys and girls, moms and dads, and those in-between.