Sunday, February 21, 2016

Epic Training Log


Epic Training.


In an effort to inspire others I have decided to document my training rides this year. You can also follow me on Strava.com




https://www.strava.com/activities/498273152



Epic training ride map






This ride was powered by 4 cans of Ensure. I would have drank one more can but I started to aspirate.Without Ensure this ride would not be possible. I just can't get enough calories without it. 


video







Saturday, February 20, 2016


Hi my name is Sean.


I have a sore in my mouth that hurts really badly that my doctors are not worried about. I worry about it every day, every time I eat. It’s been hurting for over a year. Tests are inconclusive, but the doctors can fix it by cutting the nerve.

My back hurts. It’s been hurting for over ten years. Somedays it hurts so bad I want the nerve cut out of my shoulder. Sometimes it makes me cry. It’s really hard when it’s cold. I often spend most of my time indoors watching TV.

My hands hurt, they often have breaks in the skin that look like open wounds, somedays it looks and feels like I have a dozen of cuts on my palms. I also have this problem on my toes. It’s a skin condition with no cure. It is slowly getting worse and spreading to different parts of my body.

I often feel hopeless. It’s winter time and the weather is cold and wet and that makes my body hurt more. I feel hopeless. I can’t image living this way.

I like to ride my bicycle. I have a special recumbent bike that allows me to ride with relatively little pain.  I have just started training to ride my bike 2,000 miles down the west coast this summer. 




Every winter I feel so hopeless and my body hurts badly. Somehow I find hope to carry on and somehow I overcome all this pain and all of my fears and I truly live and feel alive. I go from not being able to look anyone in the eye to talking with random strangers asking me about my bike ride. I truly feel happy and secure. I find peace and can love myself and my body.

Life is hard and yet I carry on. I’m sharing this because I feel that it is important for people following my cause to understand that I’m not superhuman and that while I have major problems I fight hard to overcome them. If you are struggling there is hope out there if you can find it. Riding my bicycle give me hope and allows me to carry on.




 I hope this gives you hope as well.

Tuesday, January 12, 2016

Cindy: Breast Cancer Survivor Interview

I got a new interview posted. I edited it myself. I am still learning! Still working on fundraising for my next bike ride. Fundraising is hard this time of year, hopefully things will pick up soon. Please share this video with anyone you know who has or has had breast cancer. Thank you.

Monday, December 28, 2015

Update: December 28, 2015



Sorry for not blogging much. To be honest I have been battling depression since the end of my epic adventure. My ride to San Francisco was both physically and emotionally exhausting. By the time I got to San Francisco I was done. I had just plain pushed myself too hard. Many days I rode all day, often eight or more hour on the bike traveling 40 to 60+ miles, and it was awesome. It felt so good to be on the road, being able to use my body, and most importantly being able to keep my pain in check. I'm in more pain not riding my bike.

We are preparing for our next ride from the Bay Area heading south and then east across the country, funding willing. Doing this trip as a family is very important to me and I know my family really needs it! My daughter and her mother have faced many hardships because of my health problems. Her mom told her she was going to have a hard life with me and she was right. My daughter was attending on of the worst schools in our state and our state is one of the lowest ranked school system in the country. She was constantly being bullied and the chaos in the classroom was insane. I spent hundreds of hours volunteering in her classroom and I'm really scared for these kids. I only wish was healthy enough to homeschool her sooner.

Traveling as a family is really important to our mission. Many people facing cancer and fellow survivors have families and children and the power of us showing up to visit and document their story is lifechanging. Cancer is such a dark and scary place and by showing them our courage and strength we can inspire and instill hope in both those facing cancer and their loved ones.

Together we change lives.




Friday, October 23, 2015

TJ's Story

Ten years ago this January, I was diagnosed with Adnoid Cystic Carcinoma in the minor salivary gland on the roof of my mouth. Although it was worse than hoped, I only lost half the hard and soft palette. I was 27 years old, married, with two young girls.


I did 30 days of radiation after I healed from surgery, and it was the worst thing EVER! I really fear nothing after going through it. The damage left seemed irreparable. I was pronounced cured, but my cancer had a 98% chance of returning within ten to fifteen years.

I felt like I was waiting to die... Like a countdown.... It took five years for me to physically return to my new normal and to mentally pull my head out of my ass.

At the same time, I began having leg pain which was quickly diagnosed as a hemangioma or blood tumor in my right sacral strut by the University of Iowa, who also performed a procedure that only caused nerve damage and no benefit. U of I wanted to perform the procedure again, which I declined, and I stopped going there.

In August 2014 (3 years later), I returned to Dr. Deming, my radiation doctor, after being told radiation may help my hemangioma pain. After doing a biopsy, it was discovered that it was actually my cancer returned.  Upon further study, due to the slow growth of my type of cancer, it's now believed that it's been there the whole time. What was the size of the tip of my thumb was now the size of my fist! Surgery was scheduled for Dec 15th, last year, to remove what could be removed without damaging nerves.

A scan was performed to ensure it had not spread to other parts of the body. As my luck was going, surgery was canceled due to it having spread to my spine, lung, rib, and possible lymph nodes. Radiation was scheduled asap!

Although radiation is typically ineffective against this type of cancer, it was all I had. Within a week I was back to walking on my own, rib pain that had gone misdiagnosed went away! A follow up scan in April showed the spot in my lung had doubled in size but the spine and hip had been reduced to half its size. I still had pain but things were so much better.


I started a chemo in February or March, it's nothing heavy, but it's to protect my bones from further damage. I do it monthly and the biggest side effect seems to be fatigue.

I had my latest scan on Tuesday and got the results today. I'm now 36; a single father raising two amazing teenage girls. A year and a half ago they gave me three to five years to live. I went on disability in August to spend more time with my kids and because the fatigue was getting to be too much. I was really feeling like this was it and really just preparing to move past this life and looking at how I leave my loved ones.


The results today showed that the spot in my lung has gotten larger. It has never been treated and is only the size of the tip of my pinky. The other two areas that were treated with radiation in December 2014, the spine and hip, were now almost unrecognizable as it was there was very little uptake and size wise it was hard to say, but it's gonna be awhile before they are threatening my life or even lifestyle much more than they currently are.

So I sit here assessing my life and I'm wondering if I haven't done it to myself again, although I'm more positive about my life, am I waiting to die again? Should I try to go back to work? Is the fatigue depression?

This can be so mentally challenging! It's so hard to just live your life it's everywhere! I have amazing family and friends that support me, but as we know we end up counseling our loved ones instead of getting it for ourselves.


My doctor has a group called Above And Beyond Cancer. They take a group of survivors every year on a trip. In the past, they have climbed Mount Everest. They just got back from Nepal doing work helping survivors of the earthquake and volunteering at the hospital and they are planning another trip soon back to Nepal.  He has asked for years that I go.

I think now I'm ready.

 by TJ Smith

Wednesday, October 21, 2015

Living Life: Ron Rock Part Three



Ron and Sean talk about life with cancer and about what life is like as a laryngectomee.

Camera: Sean Z Smith
Editor: A. F. Litt

Music:

"Sweet Moments"
http://www.jewelbeat.com/free/free-library-music.htm

"Back To Earth (Instrumental)" by Lisa Germano
Licensed under a Attribution-NonCommercial 3.0 International License. Based on a work at http://needledrop.co
http://freemusicarchive.org/music/Lisa_Germano/No_Elephants_Instrumentals/Back_To_Earth_Instrumental

"Trodden" by Taylor Howard
http://www.taylorhayward.org

"25th Anniversary Score"
https://seeds.churchonthemove.com/resources/music

"Sound In Calling" by Taylor Howard
http://www.taylorhayward.org

Sunday, October 11, 2015

Without a Voice: Ron Rock Part Two



Ron and Sean discuss life without a voice after surgery, and the challenges of being understood when speaking with a prosthesis.

Camera:
Sean Z Smith

Editor:
A. F. Litt

Music:

"Sweet Moments"
http://www.jewelbeat.com/free/free-library-music.htm

"Derek's Story"
https://seeds.churchonthemove.com/resources/music

"Sound In Calling" by Taylor Howard
http://www.taylorhayward.org