LIVESTRONG Blog

Considering the Cancer Experience

Oct 06, 2011 by Chris Brewer
5 Comments

As you might rightfully expect, cancer is often at the forefront of our minds around here, but there are times when the stories are so dramatic or inspiring that it hits you like a hammer right between the eyes, and so the last couple of days have really got me thinking about the entire cancer experience. It started with our staff meeting here at LIVESTRONG HQ, was furthered by the news of the passing of Steve Jobs, and then driven home by an email our CEO, Doug Ulman, shared with me this morning.

On Wednesday we had our all-staff gathering and while the meeting was running a little late, Doug just didn’t want to end it on time as he clearly had something special to share. By now you’ve probably heard of our LIVESTRONG Cancer Navigation Center here in the HQ. It’s sole purpose is to provide community based navigation services here in Austin, and while it’s still in its infancy, the impact is impressive. We hoped to serve ~300 people to date. We’ve had over 900 come through the doors. But while the numbers are impressive, and a bit daunting when we figure that’s only 15% of the people we potentially could help, it was three stories that got everyone’s attention.

A man came in saying his doctor told him there was nothing more that could be done, to go home, get his affairs in order, and they’d help arrange hospice. The LCNC staff was able to help find a clinical trial he qualified for, and he’s now doing very well.

A woman came in concerned that she had a $7000 deductible that she didn’t think was right and she certainly could not afford. Our financial counselor was able to resolve the matter and she owed nothing.

A man came in highly concerned that his doctor had recommended a leg amputation due to bone cancer. The LCNC staff was able to help with a second opinion that resulted in a new treatment regimen – and saved his leg!

After that a grateful woman came into the meeting to share not only her success story via our Fertile Hope program, but to thank us personally and introduce her amazingly happy daughter. What a way to end a meeting…

Then last night, as the word spread rampantly on the passing of Steve Jobs, I thought: What a cruel irony. One of the most creative and important people of our time, and he’s taken away at just 56 years of age due to a disease that crosses all social boundaries. He had no issues with access to care or money, but ultimately there was currently nothing more that could be done. I couldn’t help but also think of my brother Robin and his passing five years ago, a similar diagnosis and fate. Cancer just sucks.

And that finally brings me to attitude. We received a message today from someone who might be near the end of her personal fight; because ultimately that’s exactly what it is, and simply put, you have to fight like hell.

She wrote: I am filled with sadness to tell you that I am in a position right now with my cancer progression that there is no longer a chemo to work for me. My case is inoperable. We have not given up… but definitely looking through a more difficult list of potential solutions. We all know my power to persevere through cancer and I will continue with all my power. There is always a chance that something new comes through that will work in my favor. I have to believe that.

But it was how she ended her email that really caught my attention, saying:

I AM LIVING STRONG!!!
I get up, I walk, I fall down. Meanwhile, I keep dancing.

The cancer experience is tough, no matter what the outcome. We’re here to help the 28M people around the world navigate through this time, and we’re proud and honored to serve. Thanks – for all you do.

Chris Brewer will celebrate 15 years of cancer survivorship starting at the LIVESTRONG Challenge weekend here in Austin, Oct 15-16.

Josh

With my wife and I both being in cancer fights, we now know life is not about waiting for storms to pass but learning to dance in the rain. We are living strong!
http://www.parrabuddy.blogspot.com Skippy

Picked up this item from a ” Fatcyclist Tweet”! More Nav centres are required World wide !
My Blog item ” Birthday Wishes” outlines a desire to ride “Perth to Sydney” and then onto Adelaide for the Tour Down Under ! Need the AIRFARE and limited expenses if ALONE , but would be happy if there are others out there that could make this Project a way to ASSIST in building new Nav Centres !
y/day was the start of my 67th year and Lance will tell you that i ride where others ” Dream “!

Encourage others to contact me on email , skippi@ausi.com BUT they will have to show that multiple 100+ mile days are normal !
Mario-SATX

Chris,

Well said. It was really great to be at the LCNC launch earlier this year. Chris exemplified the attitude of all the staffers serving at the LiveSTRONG center. He gave my sister and I a quick tour of his desk and a background on the beginning of the LAF at Z’Tejas.

Amazing work they’re doing.

Mario
Peter Thomas

Chris,

Your article is so perfectly put and the disease is so indiscriminate!
I recently had to write something for a Cancer charity explaining my story, so thought i’d paste it below:
Cancer has touched a number of family members throughout my life – not that long at 44, but it really affected me most when my Mother was diagnosed at 50 and died at 51.
I must admit, it had a pretty profound affect on me and my family and although it was over 15 years ago it still remains with me.
So, having never even considered that i would ever get it, i was diagnosed with Non Hodgkins Lymphoma, Diffuse Large B Cell on Friday October 5th 2007 at 5.10pm. I was 40 years old, married with 2 beautiful young boys both under 5. Its funny how profound moments in your life stay etched in your head and this was certainly one of them.
The realisation of the enormity of the whole journey came over me in incredibly powerful waves – very frequently at first, and none more so, when i saw the x-ray of my chest showing a mass of 11cmx7cm right in the middle, a big white cloud! I was petrified.
However, the team at my local hospital were just magnificent and my Consultant and the Senior Team there kept me focused. 8 courses of Chemo – one every 3 weeks for 6 months was the first assault. Followed by a multitude of scans and checkups, then – in their words, ‘were going to throw the kitchen sink at it’. 2 x seperate weeks of 5 days Chemo at University Hospital Wales, then a gap and then a Stem Cell Transplant again at UHW, finally followed by 3 x weeks of radiotherapy every day.
Phew!
After all that, you know it then ironically, became the hardest battle for me. Just coming to terms with the whole thing. But one thing that i had in spades, was Hope. I never gave it up!!
I worked throughout all of my treatments, obviously when i felt rough or fatigued, i stayed home, but when i felt at least a little better, i went to work. Even went to work every day after my Radio. I thought i was Superman.
How wrong i was!!
The ALL CLEAR came in April 2009. Complete Remission. But, then things became difficult
Emotionally, physically and phsycologically its draining and you do not realise the enormity of the ‘the journey’ and the trouble is, there’s no rule book. You get great advise from many quarters and there are a million books and of course the internet – stay away from it!
Throughout Wales and the UK, we are blessed with exceptionally gifted and dedicated Cancer Charities and organisations such as Livestrong that have specific skills in helping patients and their families get through all elements of the journey.
My journey has enabled me to reflect and consider where i am. But, its taken me up till this year to be able to focus on that – 4 years on. Everyone has a different path and that moment of clarity and epiphany comes to everyone – you just dont know when.
So, what i try and do is ‘give back’. Give back as much as i am able to (i still have a few lingering issues, nothing major though), whenever i can for whoever i can.
Is Cancer ‘Life Changing’? I certainly think so and i wish and really hope everyone who is touched by this disease has the ability to make the most of the growing help and support thats out there to help them through ‘their journey’. And if my experience helps and guides someone else, then i feel that it would have been fullfilling my journey

Peter Thomas
Cancer Survivor & Livestrong Leader
Carmarthenshire, Wales, UK
http://www.allcancerinformation.com Walker Hernandez

Cancer is such a terrible disease, Steve Jobs speech at Stanford is one very motivating speech when he mentions about how he was diagnosed with cancer at first. I wish all people fighting against this disease fast recovery.

Considering the Cancer Experience

Oct 06, 2011 by Chris Brewer5 Comments

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Oct 06, 2011 by Chris Brewer
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