How You Live

The research team for  How You Live  is preparing for the launch of an education and awareness campaign whose target audience is 18-25 year olds.  If you fit this demographic, please take just a couple of minutes and respond to this survey. We need your feedback!

Thanks a mil.

I have tried to follow the Healthcare Reform movement as closely as I can, even though my tendency is to shut down at the first sign of debate and disagreement.  I am a peacemaker at heart, and at the end of the day… I just want everyone to be happy! Most of the time I couldn’t care less who is right or wrong.  This is funny because there was a phase I went through in college when I thought I wanted to be a lawyer.  Wanted to change my major from MUSIC to POLITICAL SCIENCE.  Can you even imagine?!  Fortunately, I realized (before I got way in over my head) that my interest was not in law at all, but in advocacy– Giving a voice to those who were neglected and treated unjustly.  At that time, I wanted to be an advocate for abused children.  (That cause is still so close to my heart.)  But today, I am an advocate for the thousands upon thousands of young adults who have been medically underserved.  It’s interesting how life experiences re-shape and re-direct our passion and energy.

It is no secret that young Americans between the age of 19 and 39 have the lowest rate of cancer survival… by far.  Nearly 5o% of those in this age group who are diagnosed with cancer do not survive.  This is significantly lower than any other demographic — including children and older adults.  Why? I don’t know exactly, but finally, research is being done to try to understand this unfortunate chasm in Cancer Land.  (Kind of like Candy Land… except about .0001% as fun.) 

Here is an interesting connection: Those young Americans I just mentioned… this same group is also the most uninsured and underinsured population in America. Could this have something to do with low rate of cancer survival? Absolutely.  It’s called delayed diagnosis.  Example:  Joe graduates from college and “ages out” of his parents’ insurance policy.  He is looking for a full-time job with benefits, but it’s not as easy as it once was.  Several months go by where he is managing a few part-time jobs…none with benefits.  Joe starts feeling ill but dismisses the symptoms as nothing significant because he’s “young and healthy” and has never had any major problems before.  He’s probably “stressed, tired, over-worked.”   Unfortunately, he feels like he can’t go to the doctor because he has no insurance and can’t afford to pay for a doctor visit ($175+), lab fees ($100s), and any scans that might be necessary ($1500 – $2000 easily).  For months he still believes it’s nothing serious.  So he waits until he can hardly function and then his mom intervenes and drags him to the doctor.  24-year old Joe is diagnosed with cancer in an advanced stage.  Not only is his disease now difficult, if not impossible, to treat because it was diagnosed so late, but now he has to pay 100% of expenses out-of-pocket, or rely on a government assistance program to take care of him.  If he is fortunate enough to survive this disease, he now has a “pre-existing condition”  and will be an insurance liability, and may not ever be able to get coverage again.    This is not okay.

I just made Joe up on the spot, but could do so quite easily because it’s the story I hear over and over …and over.  

Needless to say, healthcare reform has become near and dear to my heart and it’s hard for me to ignore the red hot debates and passionate discussions.   We can probably all agree that the present healthcare system in the United States is broken and we need help. To do nothing is going to cost us tremendously–fiscally and otherwise.  But what is the answer?  I don’t know.  I’m troubled and losing sleep over this issue!  I teared up this morning as I, again, thought about this dilema and wondered if there really is an answer.  Who in this situation is trustworthy?  Who is really looking out for the best interests of the American people?  Who sincerely wants future generations to have the resources they need to be healthy?

I have no answers. And just when I think I’m getting close to solving one of the country’s biggest problems, someone changes my mind!  In the meantime, I’m learning all I can and at least want to be an informed citizen.  No more head in the sand.  This is too important.

A couple of months ago, a friend loaned me her copy of My Sister’s Keeper and assured me it was one of the best books she’d ever read. I finished the book and had to agree with Stormi (and all the others who convinced me to read it). It was so well written and moving in many ways. Jodi Picoult has a fantastic gift of presenting multi-perspectives…and you can somehow empathize with every character.

Finished the book and was thrilled to find out that there would be a movie and thankful for the bold attention to blood cancer.  Besides Cameron Diaz nearly ruining it for me (NOT a good role for her!), it was an increible story.  I was completely wrecked and cried nearly the entire time.  It starts heavy and there’s no real relief until the end.  The tears started flowing when one of the young sisters had to have a bone marrow aspiration (and this was in the first few minutes). Something about watching it from an objective perspective, rather than as a patient, was really gripping. Those moments continued throughout the movie.

The story of My Sister’s Keeper is certainly intense and may not be absolutely realistic in every way, BUT… I was so affected because I know that this is someone’s story.  There’s a mom and dad somewhere today who will lose a child to cancer. There is a girl who will watch her sissy slip away. And there is a 16 year-old who will die too young because she lost a vicious battle with cancer.  That level of grief is overwhelming to me. 

Abigail Breslin was phenomenal, as was Sofia Vassilieva.  There were significant differences between the book and movie, but I appreciated them both. 

What did you think? If you’re a cancer survivor or family member, was it realistic? What emotions did it trigger for you?

I frequently get questions from people about my symptoms of lymphoma. “How did you know you had cancer?” being the most popular.  Here is a very brief and informative article about the major red flags of hodgkins and non-hodgkins lymphoma.  I did have all of the described symptoms, but as you will notice, none are tremendously out of the ordinary. That’s the tricky thing about this cancer.  Fatigue, fever, weight loss could mean a number of things, especially for a young adult.  Stress, mono, exhaustion… sound familiar?  Be aware that those symptoms should lead your straight to your doctors office (if evident for more than a week or two).  Do not pass go, do not collect $200!  Basic blood work will alert the doctor to the possibility of  an auto-immune disorder, like leukemia or lymphoma.  Next step is a CT scan to confirm.  After both of those tests, I had a diagnosis pretty quickly. 

Since lymphoma is the #1 cancer in young adults between the ages of 19 and 39, you need to know this info!  And knowing is half the battle.

Blood Cancers 101: What are the signs and symptoms of lymphoma?

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If you are a young adult cancer survivor between the ages of 17-35, finished with treatment an live in the United States, you are eligible for a grant from the SAMFund! They award grants for everything from insurance premiums/co-pays to gym memberships to college tuition.

The deadline to sumbit your Letter of Intent is July 30, 2009.

Click here to get busy!

Note: I’m honored to share my blog today with Kairol Rosenthal, a dynamic cancer survivor who is giving her life’s energy to being an advocate for young adults who share the common bond of cancer.  Read her book. Read her blog. Listen to her radio show. I never cease to be inspired and encouraged!

…and begin.

I was diagnosed with cancer at 27.  After treatment, I ditched my hospital gown and hit the road.  Traveling from the Big Apple to the Bible Belt, I recorded one-on-one conversations with 25 young adult cancer survivors who confessed to me experiences they had never told anyone else.

I was surprised by how many patients said that the hardest part of their cancer experience was life after treatment.  Here’s a snippet of my conversation with Geoff Luttrell, a twenty-something survivor interviewed in my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

“When you have cancer and you wake up every morning, man, you know what’s happening: chemo, scans, IVs, the whole protocol. Everything else just falls away. There’s no confusion. Life was perfectly clear on chemo. A lot of people recovering from cancer talk about trying to live life like there’s no tomorrow, but you have to work, you have to go grocery shopping, you can’t just walk around 24/7 thinking, I have to make the best of it because I could die in the next five minutes. It’s not realistic.”

Like Geoff, I wanted to be realistic about how to deal with the directionless fray my life had become after treatment.  Through my own trial and error, and while talking to other patients for my book Everything Changes, I learned some lessons that made the transition back into daily life just it a bit easier.

After treatment, be kind to yourself.  Take it slowly.  You don’t have to dive back into life where you left off.  In fact you can’t, because life has moved ahead since you were last in it.  Step slowly into your life, taking time to learn about what you want from other people and from yourself.

The entire world will want to know how you’re doing. Create a standard yet honest reply – an elevator line, that will educate them about what you are facing, such as, “I’m glad that treatment is over, but it’s pretty common to feel fatigue for a while, so I’m still recovering.”

When I traveled to Alabama, I met Tracy, a 37-year-old breast cancer patient who said, “Some people think that after an experience like cancer, if you are not smiling and doing cartwheels every day, then you’re just sitting around and feeling sorry for yourself. I am grateful to be alive, but I have good days and bad days just like I did before cancer. I also believe you can’t help yourself if you deny that you have suffered.”

She’s right. Life after treatment is hard. Maybe you’re dealing with medical bills, adjusting to a missing a body part, or making sense of your work, love, or family life. Perhaps fear, anger, or sadness about your diagnosis or recurrence are smacking you in the face.  Don’t pretend that everything is fine if it is not.  Being real about how you feel helps relieve tension.  Don’t worry – you won’t get stuck here forever.  I’m living proof of this.

If you have gone through treatment, what was life like afterwards?  What was the biggest challenge you faced and how did you deal with it?  Are you surprised that so many people said life after treatment was the hardest part of cancer?

For candid stories, practical tips, and expert advice on 20 and 30-something cancer, check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s. Visit my blog http://everythingchangesbook.com/.

Packed with ultra-confessional stories, edgy interviews, and expert advice Everything Changes is the first-ever comprehensive guide for young adults living with cancer.   Issues includes dating, sex, relationships, fertility, parenting, college, careers, health insurance, finances, spirituality, pain management, and much more.

Kairol Rosenthal is a writer whose essays have been broadcast internationally on public radio, and appear in multiple books on cancer and caregiving.  Diagnosed with cancer at 27, she still lives with it nine years later and writes about it daily on her blog EverythingChangesBook.com.

Everything Changes on Amazon: http://tinyurl.com/ltcpto

Read Kairol’s blog: http://EverythingChangesBook.com

Everything Changes is available wherever books are sold.

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?