oh, the places we’ll go!

Published
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Sarah
on November 16, 2008
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The past few weeks have been quite a whirlwind as I have been preparing to make a major transition in my life…moving to Texas!  Eek.  Although I’m confident that it’s the right move for me, it’s a bit scary for a number of reasons.  Mostly because I don’t like change.  Yesterday was the last day at my job and I bawled as I left the family I’ve been working for.  I love them dearly and will certainly miss them.  I think my highly emotional (and unexpected!) response was really because this is the first thing to come to an end for me in Nashville.  And, again, change is hard for me.  I continue to remind myself that “for everything there is a season…”

I have the most incredible support system in Nashville.  Friends are the family you choose for yourself, you know.  I adore this family.  They have walked with me through many joys and sorrows.  But,   I have come to the point in my life where it is actually more painful for me to stay comfortable.  I know God is stretching me and it’s time to do something new.  So, here I go.  Doing something new.  Which, despite my apprehensions about the transition, I’m actually very excited about. 

The primary reason for the move back to Dallas is to launch HOW YOU LIVE—the organization I’ve been telling you about.  I’ve had a few top-secret meetings J and I’m so completely thrilled about what’s on the horizon!  Brace yourself…it’s going to be off the chart.  In a nutshell, as I’ve learned more and more about the young adult cancer crisis, I have realized that there is a massive need for education and health care resources for our people.  As young adults, we avoid issues that are intimidating—like our health. Check it out: 35% of adults in their 20s are uninsured (that’s almost 14 million).  If a young adult doesn’t have a job that provides coverage (and many don’t), how do you even go about finding a policy…much less paying for it? Have you ever asked these other questions:  How do you find a primary care doctor and why is that even important?  What are symptoms of serious illness?  What if I can’t afford to go to the doctor?  These are only a few of the reasons why only 50% of young adults (20s and 30s) diagnosed with cancer survives.  It all comes down to early detection.  And that’s were HYL comes in.  We’re not trying to cure cancer.  We want to empower our generation to be proactive about their health and prevent late-detection of a disease that, if diagnosed early, is almost always curable.  If I’ve said it once, I’ve said it a thousand times:  Young people get sick, too.  Cancer is no respecter of age and it’s time for us, as individuals, and our doctors and healthcare community to pay attention to the needs of young adults. 

I can’t wait to unveil the strategic plan for How You Live and enlist your help!  We CAN make a difference.  I believe it with all of my heart.  Most importantly, I know it’s God’s heart, too. 

I leave you with wise words from Dr. Seuss:

 

And will you succeed?
Yes! You will, indeed!
(98 and 3 / 4 percent guaranteed.)

KID, YOU’LL MOVE MOUNTAINS!

So…
be your name Buxbaum or Bixby or Bray
or Mordecai Ali Van Allen O’Shea,
you’re off to Great Places!
Today is your day!
Your mountain is waiting.
So…get on your way!

 

What are you waiting for?  Let’s get moving! 

Peace and Love-

 

 

 

 

voteYELLOW

Published
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Sarah
on October 28, 2008
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In this impending election, there’s only a couple of issues that I really care about.  Healthcare is first and foremost.  Most of us would probably agree that, although we have access to amazing doctors and medical facilities in the United States, there are also massive failures in our current system.  Can the next president dramatically change the way insurance companies operate?  Doubtful.  Can he promise to make healthcare affordable and attainable for every individual?  No…Not immediately, anyway.  Can he make cancer a national priority?  YES.  And he must.  That’s what Vote Yellow is all about.  Regardless of party affiliation, let’s focus our attention on an issue that affects millions of Americans every year.  We are losing 1500 moms, dads, sons, daughters, sisters, brothers and friends every single day to cancer.  That’s 560,000 every single year.  Just think about 9/11 happening every other day.  That’s terror at its worst. 

See what both candidates have to say about their inentions to make cancer a national priority:

Vote Yellow (vōt • yel-ō)
1. n. An expression of choice made by 12 million cancer survivors and their loved ones. 2. v. To declare one’s opinion that our leaders should make cancer a national priority. 3. n. A philosophy believing it unacceptable to lose 560,000 Americans to cancer each year. 4. n. LIVESTRONG™

indulge me

Published
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Sarah
on October 14, 2008
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This is a video-scrapbook, if you will, of the How You Live concert with Cindy Morgan in August.  Andrew put this together and it’s such a sweet collection of great moments and music throughout the day.  I must say…I have the best friends a girl could ask for. 

universal health care the solution?

Published
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Sarah
on October 13, 2008
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When I began to learn about young adult cancer issues, one of the first things I found was that only 50% of YAs (18 to 39) diagnosed with cancer survive their illnesses.  I was even more shocked to learn that since the early 1970s, there have been tremendous improvements in the survival of children and even older adults….but not so with our age group.  

In 1971, President Nixon declared a war on cancer by signing the National Cancer Act and increasing funding for the National Cancer Institute by 100 million dollars.  Since then, the United States has led the way in cancer research, early detection, better quality of life for those fighting cancer, increasing clinical trials, and many other major strides.  But somewhere along the way, our generation has been overlooked and young people are dying every day from a disease, that IF DETECTED EARLIER, could have been cured. 

Consider this:

This Medical News Today article reveals that countries with universal health care have better survival rates in teens and young adults.  And I quote: Countries that have national health services easily accessible to people of all ages are more likely to have better survival rates for their teenagers and young adults (TYAs) with cancer, than are countries where individuals have to pay for their own medical insurance.  

In this article, the US is compared to Austrailia, whose citizens are all covered by the national health care program.  Between the years of 1982 and 1998, there was a 17% improvement in the survival of cancer patients 18-35.  Another article revealed that nearly three-fourths of TYAs in the UK are now surviving their diseases.  This is an 11% increase over two decades.  Yet another country with universal healthcare. 

And the United States?  No improvement.  And in some cancers, we’ve actually seen a decline in survival.  To read the juicy details from the National Cancer Institute, click here.

Hmmmm….

What are your thoughts on the health care policies of the US?  For or against Universal Health Care?

immerman angels

Published
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Sarah
on October 10, 2008
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Jonny Immerman

Jonny Immerman

I love to share the resources that I’ve found with other young adults in their cancer fight.  One of my favorites is Immerman Angels.  This Chicago-based organization was founded by Jonny Immerman, testicular cancer survivor.  He was diagnosed at the age of 26 and recognized immediately the lack of peer support.  Like all of us, he never met anyone his age with his diagnosis while he was in the fight.  The vision of the orgnization is very simple: Imerman Angels introduces each cancer fighter to one survivor who is the same age, same gender, and someone who has already beaten that particular type of cancer. A cancer survivor would be an angel - walking, talking, living proof to inspire the fighter that he/she can beat cancer.

When I was first diagnosed I found IA and spoke with Jonny on the phone.  If you can find any excuse at all to call, do it.  Cancer or not!  He’s the most inspiring and encouraging person I’ve ever known.  In just a brief phone conversation, he assured me that he knew another young woman in her early twenties who had battled non-hodgkins lymphoma and beat it.  Her name was Cassandra and she was an amazing encouragment to me.

Now on the other side, I’ve had the tremendous honor of being an “angel” to other young fighters.  I love it. 

If you are looking for 1-on-1 support during your illness, or if you’re now a survivor and want to give back, CALL JONNY.  They now have a network of over 1200 survivors representing just about every type of cancer.  Do it!

bills and medical expenses

Published
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Sarah
on October 6, 2008
in Uncategorized
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I’m a huge fan of the Lance Armstrong Foundation.  They have a series of short videos that highlight young adult cancer issues, and I’ll be posting them periodically on the blog.

This video has great info on how to deal with your insurance company, hospital accounting, etc.  The financial pressure that cancer causes can be overwhelming at any age…especially for the under-prepared young person. 

LiveStrong-

THE event of 2008

Published
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Sarah
on September 30, 2008
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“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.


pink pink pink

Published
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Sarah
on September 26, 2008
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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.

the young adult cancer crisis

Published
by
Sarah
on September 25, 2008
in Uncategorized
. 2 Comments

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-

the background

Published
by
Sarah
on September 16, 2008
in Uncategorized
. 2 Comments

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.