How You Live

I distinctly remember that when I was diagnosed with cancer one of the very first things that entered my mind–surely within the first five minutes–was, “Oh my Gosh. My hair. It’s going to fall out!”  That thought haunted me until my long brown hair actually did disappear.  As I was shaving my head, I realized that often anxiety and anticipation is much worse than the event.  After all, hair grows back, and I didn’t have to fix my hair for quite some time.

For me personally, the hair wasn’t as tragic as weight gain.  One of the silver linings for me was the anticipation that I would lose a few pounds during treatment.  (Sick, I know.) However, quite the opposite happened!  I swelled up and gained about 15 pounds from steroids. A) Retaining fluid and B) increased appetite and couldn’t stop eating.   See for yourself:

with a friend the week after diagnosis

after four months of steriods!

So…by the end of treatment, I was over it. Over the baldness and wig-wearing. Done with the fatness and clothes that didn’t fit.  Disappointed by the scar that would forever mark my chest and was not easily camouflaged.   Exhausted from trying to make outfits, scarves, accessories hide my illness.  If you’ve met this disease called cancer, you understand.

The good news is that my hair did come back. Better than ever. They told me it would…didn’t really believe it, but it’s true. It’s the hair I always wanted: thick and curly. (Lesson: be careful what you wish for!)  It took nearly a year, but I lost all of the extra weight and then some.  Sarah is back! New and improved.

If you can relate, be encouraged! You’re not alone.  Here is a short video from the Lance Armstrong Foundation of young cancer survivors sharing their body image issues and disappointments.

A month or so ago, I had the privilege of touring St. Jude’s Children’s Hospital in Memphis. I have driven past the hospital a zillion times on my commute from Nashville to Dallas, but have never stopped.  Unfortunately I know a patient who has been in treatment there since February 1, so I couldn’t just drive by one more time. And I’m so glad I took that detour. What an incredible place!  St. Jude’s is a fantastic research hospital and all, yes…ALL services are 100% free to patients.  I still don’t fully understand how that’s possible, when I routinely open my medical bills and realize that I’ll be managing cancer debt for quite sometime. I’m not bitter.

On the tour, I walked past an entire wall dedicated to the ABC’s of cancer, written by young patients.  Here’s one of my favorites:

V is for Vomet

And this one says it all:

20-somethings make up the largest population of uninsured and underinsured Americans. Two-thirds of uninsured young adults skip needed care due to high costs.  This same demographic also has the lowest rate of cancer survival (19-39 year olds).   Hmmm…makes you wonder.

This is a great article from CNN Health about college grads and insurance. It’s an easy read and we would love your feedback!

Are you uninsured? If so, why?  (finances, lack of information, not necessary, etc.)  We want to hear from you!  How You Live is in the process of developing a program to support young adults who are uninsured and your thoughts and experiences are valuable.

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.