Sunday, April 5, 2009

I'm *Still* Too Young For This

Today was the "I'm Too Young For This" Symposium in Boston -- not to be confused with the i2y organization based in New York. If you've been with my blog for it's existence, or read most of it, you might remember me blogging about going to this symposium 2 years ago (wow!) when I was going thru treatment for the hodge. It was my first chance to meet people my age, battling the same beast I was--cancer, as a young adult.

Going this year and going 2 years ago was quite different for many reasons. My main one was before I really didn't know any cancer folks. I didn't know anything of this business, was losing my hair, puffy from steroids and well just not feeling up to all the networking even though that's what I went for. I didn't know soul in the conference then either - and learned that many people brought loved ones, and had I known then, I would have brought a cancer wingman -- who knew I needed one!? You would think the cancer card would suffice.

But 2 years later it was much more different. My blog has lead me to meet many people I wouldn't have otherwise met -- in person or just via the interweb. I've found myself much more. I have a broad network of cancer folks, of every diagnosis and background, and of course my strong group of fellow Hodgers.

At the conference this year, I had a slight agenda -- meet more people, learn more about advocacy and of course network, network, network. Afterall, cancer advocacy is something I've been looking into in my soul searching expedition this year. I'm starting to already see the major gaps in the large non-profit organizations and it makes me want to re-evaluate some things and learn more about process, where their money goes, how they actually help people like me, not only women with breast cancer (no offense ladies, I know it's important) or help people quit smoking but not spend money on lung cancer research. But I digress... me + running around all day = lots of tangents.

Anywho, it was great to freely network, learn more at the event. Realize that there are other people out in the community doing great things that aren't necessarily attached to a giant non-profit brainwashing community. People that are really interested in helping, for what they believe in!
I also got to meet Kairol Rosenthal, author of the book Everything Changes. She's a Chemopalooza reader, which is always the biggest form of flattery this girl can get. She is also an amazing public speaker and provided the opening keynote speech at the event. It hit home to so many people in the audience. They were all raising their hands with questions about what she had seen during her 5 years of putting together her book, as well as own personal cancer survival tactics. She's tapped into networks and resources I've never even thought or knew of. We actually discussed doing a blog switch and being guest posters on each other's blogs. I had no idea at the time what either one of us could do, but now I think I have a few more ideas on what she could discuss here. Let me try and read her book (and I have no attention span for full books, so we'll see) but I think perhaps something about navigating thru the healthcare system and becoming your own advocate might be a good broad topic for her -- stay tuned. Oh and I'm open to suggestions on what I should write for her blog, I'm more of a jack of all trades, master of nothing kinda cancer lady, so any suggestions would be appreciated.

Anywho, I've got some networking to-do's, some personal writing to-do's and some more learning to do. But what a difference two years ago makes...actually now that I think about this, I actually remember that I took this picture the day of the conference to gauge my hair loss...

Puffy-faced, thinned eyebrows, but still shiny locks! I washed my hair for the occasion, which was a HUGE deal :)

Ahh the infamous thinning part

And me on Thursday posing for a picture I was sending to Veronica of my fancy shiny locks... my brows are unfortunately still a bit thin and not anywhere near as dark as they were before, but I'll take 'em for now :)

Anywho, that's all for now. I'm sure I have a bunch of stuff I forgot to post, but it's 1am and I'm sleepy and I need to wake up before noon tomorrow because I'm treating myself to a massage and a facial tomorrow.


BaldyLocks said...

Nice to hear from you. I've been so cut off from blogging since my computer crash. I'm going to pick up my new hardrive on Monday and will hopefully get my laptop running again. Then I will start catching up on everyone's blogs.

I am so on page with the cancer advocacy. We should get together for a project some time.

Kairol Rosenthal said...

Were your ears burning? I just wrote about you in my blog post today. Great to meet in person.

Here is the post I want to write about on your blog: how to read with chemobrain. Seriously, my book is made for it - you just have to give yourself permission to not read it front to back, but in doses that are right for you.

Hope you had fun getting tipsy with Lenny's daughter afterwords, wish I could have joined.


Veronica said...

Hey lady - glad you had a good, busy day. Sounds like it's opened a few doors worth investigating!
I think the blog swap is a great idea and will get more readers to both blogs - How about writing about the Hodgeapalooza in Boston??BTW, I love the fanciness of your links to Ryan's shirts and i2y ;0)

Take care you........Vx

B. said...

KK --

I'm SO jealous you got to go. I've been e-mailing Matt a few times, back and forth, because I want to help out this summer...

I'll have a TON of volunteer time on my hands, and so he's directed me to Tom (from the Boston chapter of i2y, who you probably already know)...

So, I'm hoping to pick your brain, once my semester is up in May. This summer is all about giving back, for me.

Glad you got to meet so many incredible people. Enjoy the sunshine!


laulausmamma said...

Sounds like you had a wonderful experience at the conference today! So glad that you are finding some outlets to put your heart and soul into...many people will benefit from your experiences and help.

jolene1079 said...

Wow, Kel, you look great!! You are doing awesome, I love your posts.

B. said...

Hey Lovely --

I actually DID know about the conference a while back, Matt e-mailed me about it. He's coming in... again, in April, and I'm meeting up with him, Tom, and hopefully some other people since I offered my help this summer and we're trying to figure out what I can do for them.

I was just swamped with more work. And, knew I wouldn't be able to enjoy myself. But, I'm glad you did! I thin there's a lot of shifting, in the Boston office right now.. so, I'm hoping I won't slip through the cracks ;)

And as for gym, surprisingly, I do NOT have a membership at the moment. I've been biking -- but, if its near me, I'll DEFinitely take it. What gym?


Hillary St. Pierre said...

I wanted to go to the conference, but being a cancer patient and all, I was sick. I also advocate. We should band together and make changes. How ironic, I've spoke with Kairol too.