Life After Cancer

SXSW Dreams Hit a Bump in the Road and Unrelated Things..

lifeaftercancer — Fri, 01 Oct 2010 23:21:43 +0000

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!
Tal

Slam Describes the First Descents Experience As Only She Can

lifeaftercancer — Wed, 15 Sep 2010 22:17:21 +0000

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!)

Camp “You’re doin’ it dude!!!”

lifeaftercancer — Mon, 06 Sep 2010 20:51:43 +0000

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.

Enjoy!

“Knuckles”

Camp “You’re Doin It, Dude!” by Melinda ‘Ta-tas’ Utendorf

I applied to go to First Descents kayaking camp for young cancer survivors with great reservations. Since I’m not exactly an outdoors-y, physical activities type of person I was very nervous that I would not be able to handle it. But things seemed to fall into place so easily that it was hard to think about not going. I happened to know 3 people who were going to be at the same camp, all of who I had previously met and liked so I decided to go for it.

My comfort zone was sure to be nowhere in sight during this week. Pushing through all of that, I hopped on my plane and flew to Denver, CO to meet up with the group. After that everything seemed to happen in a whirl. A good whirl, with tons of great memories.

The camp that we stayed at was pure beautiful nature. Literally outside my cabin was a gorgeous view of the mountains. I think the beauty alone could be beneficial and healing to a cancer patient. But that’s definitely not all there was to heal us.While this was a kayaking camp it was about so much more. The amazing staff, counselors, kayaking guides and volunteers had so much passion for nature and kayaking and so much compassion for the campers.

The kayaking guides all had so much patience, energy and humor that it was hard to believe that they don’t deal solely with cancer survivors 100% of the time but in actuality this was the first summer they had been with First Descents. Master Chief, Mateo, Burn, Flower, Ducky and Geordy all were part of our camp and made the experience so much better. There were volunteers like Sauce, Tex, Fuzzy and others who were there simply because they cared.

I will admit I was not the greatest at the kayaking part. It did not come easily to me in any sense of the word. However, with the help of Sauce, Master Chief and most surprising of all, Brad Ludden – the founder of FD himself- I was able to kayak through amazing rapids by myself, in my own boat and the thrill I got from that cannot be duplicated.

However camp really wasn’t about kayaking. Its wasn’t even about cancer. It was about the campers. My amazing fellow campers all inspired me in one way or another. By the end of the week I felt a connection with each of them in one way or another. There were 15 of us and that group seemed so large at the beginning of the week but by the end they really felt like family.Their stories were awe inspiring. Slam, who had cancer at age 6, walks with a prosthetic leg, and works with non profit agencies shared her awesome slam poetry with us. KYLF had a daughter with leukemia at a very young age and then had to deal with her own breast cancer a year later. Glisten, Avatar and Marhaba all had breast cancer at a young age and have been doing awesome things like mountain biking and kayaking to deal. Their energy, enthusiasm and spirit were inspiring. Empire was recently out of testicular cancer treatment in his 20′s, but the encouragement and support he offered was of someone way older. Loveseat also had breast cancer and her joy for life was inspiring. 6 and Boss both had brain cancer, 6 now works with a great young cancer non profit and Boss is dealing with high school. Skillet and Snotty were survivors who genuinely loved kayaking. Mary Poppins had a lot to deal with during camp but her energy was still positive and upbeat. Spedy, who had a bone marrow transplant in March is dealing with going to school for her Masters, but her spirit, humor and hilarious dancing skills were all inspiring to me. Knuckles has dealt with a rare form of liver cancer and kicked its ass 3 times now. His fight for life and his unabashed way of conquering his fears was amazing.

These people made this camp the greatest experience for me. Hearing their stories, their lives, and their adventures changed my life. Everyone truly put themselves out there and wore their hearts on their sleeves for all of us to see and learn from. We all got nicknames at camp and while we got closer and closer it was bizarre to realize we didn’t even know each other’s real names. Even more bizarre is that now I have a family that includes people of such wide backgrounds and personalities. I got more support, encouragement and kind words during this week than I have gotten in the last 3 by far.

Plus, and I think the most important part of the whole thing, I laughed more often and harder than I ever have. I have more inside jokes that no one will get in real life than ever before, which is why this family will have to stay together so someone will laugh.

“Guns don’t kill people. Chuck Norris kills people.”

~Ta-Tas

On to My Next Adventure…

lifeaftercancer — Sun, 29 Aug 2010 06:35:53 +0000

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!

Tal

SXSW Voting Ends Friday!

lifeaftercancer — Wed, 25 Aug 2010 21:23:08 +0000

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.

Cheers,
Tal

Launching

lifeaftercancer — Mon, 23 Aug 2010 08:25:51 +0000

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

lifeaftercancer — Mon, 09 Aug 2010 02:23:02 +0000

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