How You Live

“I’m Still Beautiful: A Concert/Fashion Show Event to Benefit Young People with Cancer” features rock bands The Worsties, Gone City, The Good Wolves, David Condos, Lindsey Jones, and Beuller as well as DJ’s Speakerspell, LeonardoCampo, and Illegal Alien. The event will also include a fashion show in which cancer survivors will model looks by local designers. The event will take place at Mercy Lounge on October 8th. Tickets will be pre-sold for a minimum $10 donation, and VIP tickets, which include a reserved seat and a gift, will be $40.  Tickets will also be sold at the door.

All proceeds raised will be donated to “I’m Too Young For This”, a global organization whose mission is to end isolation, improve quality of life and provide meaningful survivorship for young adults, late teens through thirties, affected by cancer. They accomplish this by serving as a global support community that
provides access to hard-to-find resources, peer support and social networks, educating providers about the unique issues facing this population, advocating on behalf of over 1 million young adult survivors to raise awareness of the ‘cancer under 40′ movement and drive change, gaining a better understanding of the needs of young adult survivors, and using music and the arts to connect and unite young adults, build community and make it hip to talk openly about their experiences. I’m Too Young For This was founded by Matthew Zachary, a brain cancer survivor now in his thirties, and is based out of New York. The website was selected as one of Time Magazines 50 Best Websites of 2007.

For more information on the event, visit www.myspace.com/imstillbeautifulbenefit. For more information on I’m Too Young For This, visit www.imtooyoungforthis.org.

Today I had the great privlege of spending time at the offices of  Susan G. Komen for the Cure.  This is one of the most–if not the most–powerful non-profit organization today and their influence is seen and felt everywhere.  There is no other organization that has branded a color and can raise money with a pink ribbon on anything from toilet paper, to dog food, to chapstick, and contact solution….to name only a few.   

Although I’m not a breast cancer survivor, I am so humbled and energized by their commitment to find a cure for a disease that has killed millions of women (over 40,000 women died in 2007).  October is “Breast Cancer Awareness Month” or something like that.  AKA “drown yourself in pink” month.  (Let’s be honest…pink hair extensions is a bit far.)  Last year, I was at the very beginning of my treatment when October came around.  I found it a bit annoying that there is only a fraction of the support for other diseases that are just as deadly….like lymphoma. Where’s the green?!  But, that lasted for a moment when I realized that I would be far more grateful for Komen if it was my mom or sister or grandma or myself that had breast cancer.  They have done phenomenal things in the last 26 years and should be commended for their unwavering commitment to one woman’s mission to end breast cancer.   Komen’s background and agenda:

“Nancy G. Brinker promised her dying sister, Susan G. Komen, that she would do everything in her power to end breast cancer forever.

In 1982, that promise became Susan G. Komen for the Cure and launched the global breast cancer movement. Today, Komen for the Cure is the world’s largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures. Thanks to events like the Komen Race for the Cure, we have invested nearly $1 billion to fulfill our promise, becoming the largest source of nonprofit funds dedicated to the fight against breast cancer in the world.”

You go, Komen!  No matter how humbling it may be, we will wear pink, buy the deoderant with the pink ribbon and participate in the Race for the Cure!  Because, God forbid…it could be my mom or my sister or grandma…or me.

I came across this article in a medical journal–CA: A Cancer Journal for Clinicians and it details the reasons why young adults with cancer are suffering so much.  Here is the general thesis:

“One in every 168 Americans develops invasive cancer between age 15 to 30 years [70,000 annually]. During this age interval, cancer is unique in the distribution of types that occur and rarely related to either environmental carcinogens, a recognizable inherited predisposition, or a family cancer syndrome. Patients in this age group have the lowest rate of health insurance coverage, frequent delays in diagnosis, and the lowest accrual to clinical trials. Their psychosocial needs are unique and generally less well attended to than in any other age group. Despite an intrinsically equal ability to tolerate chemotherapy, older adolescents and young adults frequently receive lower dose intensities than do younger patients, and at times less than in older patients. Whereas the 15- to 29-year age group once had a better overall survival rate than either younger or older patients, a relative lack of progress has resulted in the majority of cancers in the age group having a worse overall survival rate than in younger patients, and several of these having a worse prognosis than in older patients. Against this background, young adults with cancer have unique survival challenges—medically, psychosocially, and economically—that are now beginning to be appreciated and addressed with a national initiative.”

I experienced firsthand all of these issues and I am passionate about generating support for the young adult cancer community. 

The article is very insightful and if you want to navigate all of the medical terminology, you can read the full article here.

Peace&Love-

Many times, people–especially young people–ask me how I knew I was sick.  “What were your symptoms?”  I was sending an email to another young survivor who is battling the same cancer I had (NHL) and we were swapping stories.  So, I thought I’d share that with you, too!  From my journal on September 3, 2007:

I started feeling bad about six weeks ago.  I think it started with my back hurting.  The week before youth camp, I got a massage, assuming that I was stressed and that’s how my body was responding…muscle aches.  It didn’t help.  It was a deep pain and wasn’t a normal back ache.  I went to camp the next week and had a great time.  However, my energy level was so low.  I worked lots of hours in the weeks before camp, so again, just figured that I was exhausted.  I had to take a nap everyday, which seemed so ridiculous.  Who does that at camp?!  I didn’t really have a choice. I absolutely couldn’t function without sleep. 

I got back from Summer Jubilee and wasn’t feeling better. It’s not unusual for me to be tired.  In fact, I’ve been pretty lethargic most of my life.  But this was extreme–even for me.  I developed a low-grade fever that lasted for the next three weeks.  Melinda [my roommate] had a virus that made her real tired and she had a fever, too.  Naturally, I thought I caught something from her.  However, I began to have a strong sense that something was wrong with me.  I also remember being home in TX for the American Idol audition (the week after camp), standing in the kitchen preparing Ryan’s birthday lunch and suddenly feeling like I couldn’t stand anymore.  I was so exhausted–as if I’d just done a marathon.  I had to sit down. 

Mornings were really difficult.  So hard to wake up and get to work.  During the work day, I was so frustrated because I was in a constant fog.  Couldn’t communicate my thoughts or generate ideas for anything.  I remember sitting at my desk one day and started to cry because I was so frustrated and tired of not feeling well.  I knew I wasn’t doing my job to the best of my ability.  My co-workers were unaware of the physical struggle I was having.  I briefly shared with Steve and Jay and they prayed with me.  I told them my mom and dad had had cancer and for some reason I was afraid that I might, too.

On Friday, August 17, I went to the doctor.  When the fever didn’t go away, that was a reasonable indicator to me that I was legitimately sick.  Dr. Schmitz was so patient and attentive and I felt like she was completely hearing me.  I shared all of my symptoms and she got to work immediately.  I had extensive lab work done that day, as well as a chest x-ray.  She test for like nine different things–mono, lupus, epstein-barr virus, thyroid disease, etc.  She also did some other tests which turned out to be the most important.  Prior to this appointment, I wasn’t too worried.  I knew I was sick, but felt like it was probably a relapse of mono.  That was reasonable. 

I didn’t get those results for almost a week.  Dr. Schmitz called me at work.  I freaked out a little because the doctor herself was calling.  Not the nurse.  The nurse calls when everything is normal.  I was at lunch when she called, so I spent the rest of the afternoon calling every 15 minutes!  She finally called me back.  “Sarah, I have the results of your lab work, and basically, the results are horribly inconclusive!”  She told me that I was negative for everything–mono, lupus, etc. but was mildly anemic.  Anemia causes fatigue, but not fever.  She also said that my platelets were elevated and that these other tests indicated a high level of infection/inflammation somewere in the body.  But, my chest x-ray was clear.  At this point, I realized that she was looking for lymphoma…thus the x-ray.  It was likely to present in the chest somewhere if I did have that type of cancer.  Negative x-ray = good news.  Step two was more blood work and a CT scan of the chest…just to make sure the x-ray was accurate.

[side note to my blog readers: i have NO idea how in the world i documented all of this!  but it's cool because there is no way i could remember everything.  if you're bored...discontinue reading.  won't hurt my feelings!  and plus, i'll never know.]

I had the scan on Wednesday, August 29 (after much fighting w/ insurance).  Shelly [Alfred] went with me.  And Nadia.  What wonderful company!  It didn’t take more than ten minutes.  That’s a good sign, right?  If the tech would have seen something,  I’m sure she would take more pictures.  At least that’s what someone told me. 

On Thursday, August 30, my mom and David [youngest brother] started driving to Nashville to spend Labor Day weekend w/ me.  I was so ready to see my Momma!  Also that morning in staff meeting, Linda informed the staff that I was waiting on test results and had to precious staff pray for me.  About an hour later, Dr. Schmitz called.  Yikes!  “Sarah, I have the results of your CT scan.  You have a mass in your chest.”  Gasp.  As confidently as I knew that I was sick, those were not the words I was prepared to hear.

Hello from Texas on a rainy, Thursday morning!

I’m here visiting family and friends for a few weeks and enjoying this much-needed time of R&R. 

Last Sunday, I had the amazing opportunity to do a radio interview (with Cindy Morgan and Andrew Greer) on the Brian Mason Show (Mix 92.9 in Nashville).  I shared some of my story–life before, during and after cancer.  I was a little nervous (you can hear it in my fast-talking and way too many “um’s”), but had a blast!  I begged him to let me come back.  I have to think of something else to talk about now!  Any suggestions? 

Peace&Love-

THANK YOU, THANK YOU, THANK YOU to all who came out to the “How You Live: An Evening of Songs” concert with Cindy Morgan, Andrew Greer and Sara Beth.  It was an incredibly special evening and I was so blessed by the presence of so many friends and even those I had never met.

There were many moments that were highlights for me: the impromtu appearance by Ginny Owens singing “If You Want Me To,” the phenomenal singers and musicians that shared the stage together, singing “How You Live” with the song’s amazing writer, Cindy Morgan….just to name a few. 

Here are a few snapshots for your viewing pleasure:

with the beautiful, talented, and oh-so-sweet, Cindy Morgan

Andrew Greer (amazing friend and event organizer) with John Roberts

the extraordinary Sara Beth

singing "How You Live" with Cindy

Tonight, an unprecedented TV event will take place on three major networks: CBS, NBC, and ABC–all in effort to “Stand Up to Cancer.”  Watch this short PSA below with Katie Couric and you’ll hear startling statistics that remind us why we MUST stand up to a disease that has killed too many of our moms and dads, sons and daughters, friends and loved ones.

Watch tonight at 7:00 p.m. CST on any major network!!