Wednesday, May 21, 2008

On a serious note...

I'm sure since most people don't live under a rock they've heard the news about Sen. Ted Kennedy's brain tumor diagnosis. There was an article in today's SF Chronicle about the issue titled "No cure for malignant glioma like Kennedy has."

Well that's a cheery headline, isn't it?

In all honesty, it _is_ true. There is not really a cure yet for the type of tumor he has. In all the research that's been conducted, they haven't been able to come up with the silver bullet that works for everybody who is diagnosed with this particular type (there's over 120 types of brain tumors, fyi....but his is the most common malignant type).

But there is hope.

And that's why I hate titles like that. So what if there's no cure? Just because there isn't doesn't mean that the treatment he receives won't extend his life for another 10 years. I know people who were diagnosed with this type of tumor 10 years ago and told to get their affairs in order because they only had 6 months. Treatment has come a long way over the last 10 years and there continue to be new developments. It just happens to be a very complicated cancer.

Doctors really don't know a damn thing about prognosis. But they feel like they have to say something because we demand it (well, some of us do).

Anyway, I am not going to go on standing on this soapbox with this subject. Lance Armstrong, among countless thousands of others, have shown us what hope is about and why we must have hope and live strong. I truly believe it with all my heart and soul and also firmly believe that as patients we must be our own advocates in this system.

We must be educated. We must seek support. We must fight for our right to a second, third, fourth and fifth (and maybe 6th?) opinion. We must demand to be treated with respect. We must demand the respect of honesty - whether that honesty comes in good news, bad news, or *gasp* uncertain news. We must lean on others. We must be strong ourselves.

Why am I writing this? Well...I've been really struck by this issue. I used to work in Patient Services for the National Brain Tumor Foundation and was very passionate about that job for 4 years. I left only because I was moving up to Santa Rosa and a 60 mile commute wasn't my cup of tea.

I can't tell you how many people I spoke with said "I wish we had known about your organization sooner."

I am frustrated by the media's attention to this issue. Nowhere in the last few days has there been any mention of brain tumor support organizations. What about ALL OF THE OTHER 120,000 PEOPLE DIAGNOSED WITH PRIMARY AND SECONDARY (metastatic) BRAIN TUMORS EACH YEAR?

They count, too. And they need to know that there is hope. There is support. There's a place to connect with other survivors who've been through it all. If anybody knows someone who is not sure where to turn with their diagnosis (like I said, primary or metastatic), please let them know about the National Brain Tumor Foundation. Let them know they're not alone.

NBTF can be reached at www.braintumor.org.

Here's the letter I wrote to the author of the article (who DID write me back a nice note!):

Hello Sabin,

My name is Sarah Trejo and I am formerly an employee of the National Brain Tumor Foundation, which is a nationwide non-profit based right there in San Francisco. I felt moved to write you in an effort to give a push for more awareness on this subject. I suppose there will be more news coverage of this issue as Sen. Kennedy's health progresses and he moves forward with his treatment.

I wanted to alert you of NBTF's presence in SF (www.braintumor.org, 22 Battery St, Ste 612) but also to perhaps encourage you and/or other writers who may be continuing to cover this to not only use NBTF as a resource for your articles (the organization has been around for over 25 years and continues to be the leading provider of education and support to brain tumor patients and their families), but also to share with reader the kind of support and information that is available to those affected by this disease.

While I am no longer affiliated with NBTF, I feel very strongly about the work that they do and the kind of support they provide, from pamphlets/brochures to teleconferences on treatment updates to trainings for caregivers, among many other things.

I can't tell you how many people would call us and say "I wish I had known about your organization sooner." I hope you'll consider them in any future pieces you may write.

Sincerely,

Sarah Trejo
Santa Rosa, CA

4 comments:

BreeWee said...

Way to take a stand Sarah! You are one brave strong woman!

Thanks for doing what others don't... we need more people like you!

Marit Chrislock-Lauterbach said...

LOVE THIS! People are SO negative about their diagnosis - JUST because someone has been given X diagnosis, does NOT mean they need to live the rest of their life in fear and follow X plan. Everyone is different, every BODY is different, and everyone has a different approach to their bodies. If I was listening to several of my doctors, I would still be sitting in bed on bed rest. Totally unacceptable! Thanks for highlighting this...

Keep up the AWESOME WORK!

Eileen Swanson said...

Hey Sarah,

Great post. You are so awesome for experssing yourself always! Thanks for the inspiration.

On another note, sorry for the late email on the ride tomorrow. Hope you get it. We are leaving my place at 5:40AM. Let me know if you are in.

E

rocketpants said...

I'm glad you wrote the author a note...i was not aware of organizations such as this and am encouraged to know they exist.