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Sorry I haven’t posted in awhile, but a lot has been happening and things only look to get crazier in the near future.

First up, the quest to present my ideas about how to build healthcare apps on the Twitter platform hit a little bump in the road.  The first batch of panels and presentations that have been accepted were announced in late September, and mine was not among them.  Although I’m obviously not thrilled about this, it in no way deters me from what I’m working on.  I’ve said from the beginning that I’m doing this regardless of whether or not SXSW selects me to speak at the 2011 SXSW Interactive Festival.  I’m also encouraged by this part of their latest email to me:

“Please do NOT assume that the titles on the website represent what we think are the best ideas from the PanelPicker. The first batch of programming announcements merely represents the first batch of programming announcements — nothing more, nothing less. In fact, we intentionally save some of our favorite proposals for the second batch of panel announcements, which is scheduled for Monday, November 8.”

In other news…

I spent last week in Houston attending the Anderson Network cancer survivor’s conference and meeting with some old friends down there.  The trip was far too short, but we had awesome Tex Mex and I got to roll around in a scooter.  There’s even a grainy cameraphone photo of my joy ride circulating on Facebook somewhere…  Good times!

Most importantly, I connected with several other survivors and shared a lot of great stuff together with them.  I also met a guy with a rare cancer called intrahepatic cholangiocarcinoma which, oddly enough, is what my doctors originally suspected I had before my biopsy told them otherwise.  As chance would have it, we both had the same surgeon at MD Anderson.  Small world!

Back home, efforts to establish a group of young adult cancer survivors in the Greater Toronto Area are going well.  Six of us met last week for a healthy dinner and became fast friends.  We’re looking to build a strong core of YA cancer survivors here to help the newly diagnosed face the challenges of a cancer diagnosis and help them transition into cancer warriors and becoming their own best advocates.  I am very excited about the direction our group is going and will have more to say about it at the end of the month (I hope! :))

Finally, our little Facebook group of patients with Fibrolamellar HCC has grown to 7 members!  We have been joined recently by the widow of my hero Sarah – the inspiration for everything I do around survivorship – and our first French member.  My French is admittedly quite poor, but luckily we have Google Translate to fill in the gaps.  I was also contacted by a Fibrolamellar HCC researcher this week and look forward to sharing knowledge and working on solutions for our little community.

That’s all folks!  Have a great weekend everyone!


Today it is my privilege to share with you a very special poem written  by one of the many amazing cancer survivors I had the honour of meeting at a First Descents camp in Colorado.  Her camp name is “Slam,” a name that she has earned by sharing with us some of her amazing slam poetry.

You’re probably wondering: “So what exactly is slam poetry?”  Ah, an excellent question.  That is precisely what our guide Geordie asked Slam one fateful morning as we went kayaking out on the Colorado River for the very first time.  Without even missing a beat, Slam replies with a wicked poem, matched to a beat, that not only explains the concept but demonstrates it superbly as well.  Our little group of  kayakers and guides was blown away!  That night at campfire we created a brand new award  – the first ever “Awesome Award” – and Slam became the first person ever to win it.

Naturally, when I described the story to everyone explaining why Slam was about to win this new prize (only a few of us got to hear the poem on the water), a chorus of “Prove it!” erupted.  For the second time that day, Slam rose to the occasion and turned skeptics and the uninitiated alike into big time fans of her epic rhymes.

After a raucous round of applause, we asked her if she would consider working on another bit of slam poetry, one that would capture the essence of our First Descents camp.  Slam didn’t make any promises, but she said she would work on it and see what she could come up with.

At the end of camp, we were all eager to hear her poem.  Slam did not disappoint, producing another instant classic.  It’s an honour to share with you now Slam’s First Descents anthem.

First Descents by Adele “Slam” Ramos

We got off the plane
Note sure what to expect
Would it be a first descent?
Or a first eject

The road was windy
The future unknown
We were truly out of our comfort zone

All survivors
Far and Near
Cancer Crushers
Crushing Fear

With the river in front of us
We were on our way
Ready for
A brand new day

Sway your hips
From side to side
Kayak straight
An’ enjoy the ride

Rock the Rapids
Ride the Waves
Boof the Rocks
Surf and Save

The swift and the quick
Guide that stick
An’ paddle on your way

This river battle
Runs deep and shallow

So get down low
Learn how to roll

Wipe that splash from your face

Wet exit when you need to
All you do is lean in through
There is no such disgrace

Pick up that boat
To return to float
With a smile on your face

Cancer led us to this place
7W greased the wheels
I am not sure why I ended up here
Yet, I’m loving how it feels

When these days come to an end
I will look to see your faces again

All locked in
An eddy flower
Floating on Water
Flying on Power

Row, Row, Row your Boat
That’s all you have to do to stay afloat
Sway Your Hips
From Side to Side
We Rock this River with FD Pride

Slam sporting her "Awesome Award" (i.e. the hat!)

So as you probably already know, I spent the past week in Colorado kayaking the great Colorado River with an awesome group of cancer survivors and the best adventure guides I’ve ever met.  It was a life changing experience made possible by the wonderful people at First Descents, an amazing non-profit organization that helps people affected by cancer.  If you haven’t heard of them yet, you have to check out their site right away!

Ok so now that you know what First Descents is all about, I wanted to give you a glimpse of our camp.  While I work away at distilling my own thoughts about camp and trying to preserve the memories forever, I would like to share with you the excellent recap written by one of my fellow campers.  In this note she posted to her Facebook page, she does an excellent job of capturing what our camp experience was all about.



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On to My Next Adventure…

Just wanted to leave a quick note before I go off the grid for a week.

I’ve been very fortunate to be offered an opportunity to join a First Descents camp for one week of kayaking in Colorado.  I am so excited to meet all the other cancer survivors – the ones still undergoing treatment, the newly diagnosed and the ones – like me – who have just recently completed treatment and are looking for how to move forward and put their lives back together.

I am going completely off the grid – I will not have a cellphone or computer, just a journal, a camera and a book on photography (ok, maybe a few other books as well… 😉

For those of you not heading out to camp, you still have one more day to vote for my sxsw panel 🙂

Looking forward to lots of exciting things when I get back.

Carpe Diem!


SXSW Voting Ends Friday!

Just like that, I blink, and voting is almost over.

I have been so looking forward to this and have really high hopes that I will be given the opportunity to present my ideas on how to build novel health care services using the Twitter platform.  A day doesn’t go by where I don’t think about how we can make the world a better place for everyone unfortunate enough to be dealing with a difficult medical condition.

If you have not yet voted, please take a minute (or 2) to vote now!

And for bonus points, please tell all of your family and friends to vote too.

Next week I’m off on an exciting adventure – I can’t wait to tell you all about it.



There are still some things that can be improved, and so much more I want to add, but as you can see if you take a look around, things are coming together nicely 🙂

Getting Ready to Launch

T-1 Days before this blog launches – check back here soon!