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

Friday, October 9, 2015

Lucy's Story





































I used to do a lot of singing and got to the point where I couldn't hit notes I used to be able to hit. I also worked on the telephones and it got to the point my voice kept breaking and I felt like I had a frog in it and needed to clear it.



After bumping into an old friend and her commenting on my voice and how bad it sounded, I decided to go to the doctor. I was told I had laryngitis and to rest my voice for 2 weeks. In them 2 weeks, I read a story in a magazine about throat cancer and I knew as soon as I read it I had cancer.

I went back to the doctors and tried to tell him but his response was, "you are only 25 there is no chance it's throat cancer but I will do the checks to put your mind at rest."


After having a camera down my throat and a biopsy, I was diagnosed with cancer of the larynx. I had 6 weeks of radiotherapy and was told they could no longer see the cancer. But only a few months later, I started having problems again.


I was violently sick all day and had to phone the hospital as it has hurt my throat. I was told it could be related to the cancer and to speak to my special nurse. I felt better the next day so I left it, but I started to get earache.


About 5 weeks later I had another biopsy. I was told the cancer had returned and was more aggressive. I was told I needed an operation in a couple of weeks. I begged them to try laser first, as I really didn't want a Laryngectomy, but unfortunately it was too aggressive for laser.

I had my Laryngectomy February 1, 2012 and since then I have had a little boy, who is 13 months old.
                                       
----Lucy Lodge



Tuesday, October 6, 2015

Elayna's Story

I was thirty-one when I first lost my voice. I whispered for over a year and a half, from October of 2011 to April of 2012. I was diagnosed with Chronic Laryngitis and was treated with two rounds of steroids and four rounds of antibiotics. After my voice did not return I was referred to a Nose, Ear, and Throat Specialist for further examination. 
By September of 2012, I had a Micro-Laryngoscopy to strip and burn the true vocal cords and the Larynx. I had abnormal growths on both my vocal cords and my Larynx that had been pinned open for months by them and was restricting my ability to speak and project any type of sound. 
After, my results were negative from all the biopsies that had been taken.  My doctors followed me with check-ups to monitor any changes in my voice after I was put on voice rest for three weeks. 
Six months later I would have a second Micro-Laryngoscopy and Biopsies for more growths that had developed within my Larynx and true vocal cords again. I woke up from the second surgery with a high pitch ear ringing that I still hear every day and all day long. This time I was diagnosed with Squamous Cell Carcinoma Stage two on the larynx and True Vocal Cords in April of 2013. 
I was thirty-two years old at the time and a full-time mother, college student, and a server. My Mother moved up here from Raleigh, NC to help my family take care of my kids and me during my battle with cancer.
I would have seven weeks of radiation, five times a week, from July of 2013 to August of 2013. The day I went in to get fitted for the mask I was alone and thought, "this is no big deal." I told my husband there was no need for anyone to accompany me. I had a complete emotional meltdown while I was being fitted for the mask. 
The mask isn’t even bad. It is what the mask represented for me. I couldn’t run or hide. This was real and I was going to have to deal with it. 
After the first three visits, my treatments went quicker and quicker. My last day of treatment was August 23, 2013 and I was really proud of myself when I received a certificate. I still have the mask as well.
October 16, 2013 was the last day I ever sang a song or heard the sound of my natural voice. I lost my voice and became pale and sick. I couldn’t hold down any fluid and when I saw my Radiation Doctor for a checkup she was extremely concerned for my well-being and referred me to the James Cancer Center. 
After being evaluated by the Cancer Team I was on the surgical table within four hours. I had a tumor that was suffocating my airway and, if My Radiation Doctor would not have sent me to the James Cancer Center, I may not be here today to share my story with you. I woke up with a tracheotomy and spent eight days in the James Cancer Center and Halloween.
Between October 2013 and November 2013 I would have several false positive biopsies from all the radiation treatments I received over the previous summer. The Medical Board at The James and my wonderful Doctor would not do a full Laryngectomy until he knew for sure I still had cancer. 
My Doctor and his team did everything they could within their power to save my Larynx and Vocal Cords during my horrific battle. My age was quite the shocker to the staff at the James Cancer Center and to most people I have spoken with about my specific type of cancer.
On November 21, 2013, I would have a seven hour surgery and have a full Laryngectomy with a skin flap and a one-way valve to voice and still have verbal communication. I woke up with a nasal feeding tube, five drains, sixty-two staples, and a permanent stoma. I spent eleven days at the James Cancer Center and, within my stay, I also spent Thanksgiving with them as well. 
The first five days was really rough I woke up with a pounding in my ears that is still present today along with the ear ringing that has been with me since 2013.
Since my surgery I have been cancer free and I have adapted to being a full Lary pretty well. I am working on my second degree with Psychology and Nursing and I am still a server and a bartender. I am hoping to one day work at a Cancer Unit helping other cancer patients’ with their specific cancer journeys.
I have good days and bad days but, for the most part I try to keep going and I don’t allow my Stoma to dictate or restrict how I live my life or enjoy it.


Elayna Bauer


Saturday, October 3, 2015

Sharing Our Stories: Ron Rock



An excerpt from Sean's conversation with Ron Rock, looking at the lifesaving power of one survivor reaching out to another...

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

Monday, September 21, 2015

Stories From the Ride: To the Redwoods...


The last several days have been wonderfully hard. I started collecting photos of interesting objects I found along the road during my ride from Eugene to Florence. I went a few days without finding anything except a hat and a lighter, and then about 50 miles from the Oregon-California border this vividly bright red tube landed right in front of my bike forcing me to stop and move it out of my way. 

This was the start of my downfall. It was not until after I became sick an hour later with chronic diarrhea that I realize what I had touched. It was a waste disposal tube from an RV. 


 

 This did not stop me from exploring a magical land filled with dinosaurs.

  

After hours of laboriously struggling to keep everything clamped shut tight I made it to California...


I was sick all day and had to just keep riding until I got to camp. After setting up my tent, I walked down to the beach and discovered a nice bonfire that beckoned me over, so I asked to joined in on the fun. We sat around the fire listening to The Doors while sharing stories and drinks. Near the end of the night, the neighbors above us started lighting off fireworks creating a spectacular show that seemed to last all night. It was straight out of a movie starring Keanu Reeves capping off my first night in sunny California. It was an epic end to a horrible day.

The next morning I awoke early, like always, surrounded by fog. I laid in my tent listening to the surf roll in while trying to go back to sleep, but I soon gave up and decided to hit the road. The road ahead of me was shrouded in mist and mystery. I was dreading the upcoming climb, this would by far be the biggest challenge of the entire ride, and I was already exhausted from the last few days. I had planned on staying in Crescent City, but arrived so early I decided to just keep riding.

As soon as I hit the grade, I had to dismount and walk the entire way. My load was too heavy.  Just before arriving in California, I picked up three cases of Ensure from the pharmacy in Brookings Oregon.  My pharmacist Amber from the Albertson's Sav-On in Troutdale, Oregon had three cases transferred and ready for me. I ended up giving away a case to a group of homeless to lighten my load, but it was still too heavy, yet I kept pushing....


After about an hour of pushing my new friends drove past me and pulled over to take some photos. They soon left me in the dust. After a hundred false summits, I reached what could only be the top of the mountain and ahead of me awaited an awesome seven percent downgrade sending me flying down the hill for the next twenty minutes.
When I reached the bottom I ran into Paul Bunyan and his Ox, so I stopped for a photos.


I carried on and soon came across a small shop selling Smoked Salmon and Indian artwork. I asked for some traditional belly strips and left one of my brochures. While I was outside eating, the nice lady tending the store brought me out a ten dollar donation and took a picture with me. Smoked Salmon was the second food that I could eat after ten years of not eating, and this was the best smoked fish I have ever had. I packed half my fish in ice and headed down the road for camp.


Following the shopkeepers advice, I headed for the coast and again I faced a daunting hill that was hell to push over.  Just after I started down the other side, I was flagged-down by a group of hitchhikers whom I had kept crossing paths with over the past week and we shared some food and talked for about an hour before someone stopped offering them a ride.

I arrived at a Redwoods State Park campground and was completely exhausted. I was promptly warned about locking up all of my food because of the bears. I even had to sign a form agreeing to lock everything up in a large steel box. As a neck breather, my sense of smell is weak, but I reeked of sweet goodness of my favorite food and no amount of washing would rid my hands and clothes of what could only be crack for bears. I finished the rest of my fish and did my best to clean up…

Monday, August 17, 2015

Update from the road: Days 7 - 10

Today is day 10 and my second rest day. I spent the day at a windsurfer and kitesurfer camp. I took another wrong turn and ended up at a campground that has WiFi and the surfers invited me to stay, covered my camping fee, and gave me a ton of food from their potluck. They really saved me because there was no way I was going to make it back to the 101 and down the road to the state park with the $5 hiker-biker sites and I was going to just sleep on the beach.

I was dead tired and low on food and money. I thought my nearest bank was an 85 mile round trip, but the surfers found one for me that is just 23 miles down the road. I learned today that most of the towns on the coast are 23 miles apart because that's how far the stagecoaches could travel in a day.


The camp host is an old army vet who brought me over a bag of food and offered me money for the shower. I was invited to cake and ice cream tonight to celebrate a surfers 69th birthday! I have not had ice cream in days, I can't wait!


It's been a few days since my last blog and things have been wonderful. I made it to the coast, camped four miles south of Florence at a hiker-biker site at the state park, and met a couple from Canada. The girl's father had prostate cancer and she shared some of her feelings about what it was like for her when she found out. Her partner's uncle has the same cancer as me and I was able to give them some brochures that will hopefully be helpful.  Maybe, when I get to Calgary City, I can talk them into an interview.






I got up early and headed out for the next campground planning on only riding 30 or 40 miles, but one of the bikers I camped with passed me and the race was on. We were planning to camp together on the beach, but I lost him after going over the bridge north of North Bend.  Wow, was that a fun bridge to cross! I lived in North Bend for a few years as a kid, and I stopped to look in the mall I used to terrorize and the movie theater that we stuck into and watched movies at all summer. I looked for my friend's mom's house, but could not find it and it was getting dark. I needed to get to Red Sunset Bay to camp. This was a hard 65 mile ride and I arrived at camp super late and had to set up in the dark. The campground was great with a super hot shower that I had to abuse for a long time!



I got up in the morning and was completely exhausted, but felt the need to push-on and ended up riding the hardest stretch of road so far, Seven Devils road from Charleston to Brandon. I was so exhausted I had to walk up every hill. The night before the sign said 44 miles and I was really not looking forward to another long day, but when I got to the road the sign said 22 miles and my heart filled with joy.  Even having to walk up every hill, I was happy!



When I reached Brandon I was done! Real done! I even tried to call and message a few friends about renting me a cheap motel room, but the cheapest room I found was $85 and that was at a special rate just for me. I kindly thanked the man and headed down the road to find a campsite. It was nice that he treated me with respect.

I stopped in town to investigate better cellular service because T-Mobile has almost no coverage on the coast and went to buy a sausage on a stick for two dollars.  I expected a whole sausage but, when the guy cut me off a two inch strip, I kindly asked for my money back and started heading out of town. I rode around old town just for fun and really wish I could have afforded a crab-cake.  I talked with a motorcycle biker who had cancer and then ended up meeting a fellow cyclist whose friend had just died of cancer. We talked and shared our stories of pain and loss and I left him in the dust, fully expecting him to pass me down the road. I was heading for a park where I thought there would be camping and got about a mile down the road before realizing that I did not want to ride back up that hill. When I got back to the 101, I noticed that there was a small sign stating that there was no camping at that park! I was so happy I had turned around!



The next sign I saw showed tent sites and free WiFi with the state parks logo so I assumed that they had hiker-biker sites but they did not. They were charging $15 dollars a night and all I had left was $20 until I made it to a bank and cashed a check. I was about to leave when I was chased down and invited to a potluck. I explained that I was heading down the road looking for a hiker-biker site and this nice lady said not to worry about it and just set up my tent. The camp host let me stay two nights for free. I really needed the day's rest.

I've been having a hard time connecting with Warmshower.org hosts because T-Mobil has horrible coverage on the coast. I'm going to have to buy a new phone with Verizon or someone else so I can manage my affairs better. I hate to keep spending money on technology. My GoPro crapped out, hopefully it is just a problem with the update I installed before leaving Portland and someone with a computer can help me get it healthy again. I lost a lot of recording time between Eugene and here. Makes me kinda sad. I really wanted to record the whole trip and play it in fast forward for all my followers.
I ended up at Floras Lake Windsurfing and Kitesurfing campground south of Bandon. Once again, people opened their hearts to me and shared their food, fire and good music with me. It was by far my best night so far. Once again I had rode too far and hard.  It was nice to sit in a camp chair and listen to people's stories.
The next day I retrieved my electronics after my new friends charged them for me and ended up talking with a man who is a kitesurfer, currently has prostate cancer and has already has it removed and treated with radiation.  His tests still indicate cancer, but today he was out flying across the water with his kite sailing high. I'm still hopeful I can talk him into an interview.
I made a new friend named Josh and helped him repair his kite.  All I really did was hold it down and he helped me take some great photos for my daughter. It was awesome watching him get his kite up into the air!
I'm heading for Gold Beach in the morning to cash my check and to get another day closer to California! A song by David lee Roth comes to mind! The sun is setting and I might be missing ice-cream and cake, so I'm off to see if anything is left! I'll update next time I get free WiFi. This Word program only works if I have WiFi!
Peace!

Thursday, August 13, 2015

The first week on the road...

Today I awakened in my own private apartment owned by an awesome couple and it sounded like it was raining. My heart sank for I'm not ready for rain again.  It turns out they have a stream in their yard. All the people I have been staying with have been very nice and I'm really learning a lot about adventure cycling.


I got Word to work on my tablet today, so I can now start writing real blog posts. 

Saturday, August 8: Day One 

The first day, I left Portland on Saturday around 4:30.  Right out of town,  on the way to Oregon City, I hit my first big hill and had to push half way up.  It was brutal and I arrived at my host Sandy's home kinda late. They had food waiting for me and chuckled at how much gear i was pulling.


Sunday, August 9: Day Two

I woke up to a nice bowl of oatmeal. Sandy is a health coach and she gave me my first interview. We talked about nutrition and she provided a wealth of knowledge. The interview went well, but being my first interview, I had some of the camera angles wrong.  My last host helped me figure out how to frame my shots for future interviews.


I left Sandy's home around 10 AM, figuring that I could ride 80 miles to Corvallis, OR for an interview with a lady starting chemotherapy the next day. After 11 hours of riding I was still 25 to 30 miles away and was looking for some bushes to sleep in when I came across a small farm house with their lights on and door open. I was running low on water, but had lots of Ensure, so i decided to ask them for some more water and some directions to the next town. I guess I was in bad shape because the lady made me sit down and rest and then told me I could sleep in her camper. God, I was ready to cry!

It turns out that she is a fellow survivor and she gave me my second interview. It was awesome, and we both shared some very personal stories. After I went to go to sleep in the trailer, her neighbor came over to make sure everything was OK. It's nice to see neighbors looking out for one another. It turns out that this neighbor's friend is having his voice-box removed next week. I was right where I needed to be and was able to leave the lady with my brochures that have a list of support groups and suggested that this friend contact me.



Monday & Tuesday, August 10 - 11: Days Three & Four

I set out the next afternoon for Corvallis, OR and again arrived in town kinda of late with no place to stay. I tried calling a few people from the Warmshowers network and got hung up on three times. Again, I wanted to cry, but one lady called me back.  She and her friend ended up coming into town to meet me and they insisted on loading my bike and trailer into their van and driving me to their place. I said I wanted to ride, and they again insisted on driving me because they live up a big with a 20% grade.  Thankfully, I listened and took the ride. 





We arrived at this awesome old country home in a woodland setting with deer all around and a bunch of chickens in a coup. Real down to earth people who prepared a meal and cooked up some of the fresh corn I purchased from a roadside stand on a private farm. We ended up spending most of the night talking. The next day I was too exhausted to move on, so I stayed another day. We talked some more and I took a ride into town to get a new SD card and some food. This was the first time I had spent more than a few dollars since leaving Portland. Everyone has been so kind offering food and drink.




Wednesday, August 12: Day Five

I set out for Eugene, Oregon, but I got a late start and did not make to my hosts home until 10 pm. A four hour ride took me more like seven hours. Today I'm going to try and lighten my load and maybe ditch the trailer so I can travel faster.

The host I'm staying with has a friend who's husband died of throat cancer and I might stick around to try and get an interview out of her. If not, I plan to come back and try to connect with her in the future. Hopefully she will add me on Facebook.



Thursday, August 13: Day Six

The plan for today is to head west down Highway 126 toward Florence. I won't try to make it all the way over the Coast Range, instead I'll stay at a private yurt campground. They have a free yurt for me to stay in tonight. I have to get going soon if I'm going to make it. If my host's friend calls and wants to connect, I'll turn around and come back to Eugene for an interview.

My body is adjusting to all the miles. Last night, after riding seven miles, I made it up a bike hill without having to dismount and push the bike. That felt good and gave me renewed confidence. I'm too concerned with how far or how fast I travel, my main mission is to connect with other survivors. I started posting Craigslist ads in cities I will be visiting looking for anyone interested in sharing their survivor stories.

I'm excited to get my new brochures from Atos medical.  The black and white ones I have now are just not the same thing. I want to present people with something of quality that looks professional. Atos is also sending me some jerseys they had printed. They are also sending me one or two of their new hands-free units that will allow me to talk with having to stick my dirty finger in my hole, my stoma... I call it the hole.
I really looking forward to riding along the coast and doing some camping at the hiker-biker sites that charge $5 per person. I expect to meet lots of fellow cyclist and hope to meet some fellow survivors. 

Thank you for following my adventure and sharing my story, your support has made this all happen.

Tuesday, August 4, 2015

Two nights before I hit the road...

Just two nights left before I hit the road. I’m having lots of mixed emotions that are keeping my mind stirring and my heart tight. I can never sleep before major events. I did a hundred mile bike ride once on no sleep and climbed Mt. St. Helens on no sleep (more than once!). I’m just too excited to sleep. It has been a long road getting here.



I can remember not being able to walk around the block about six years ago until one day I did and I kept doing it. So I was throwing up on the side of the road with cars pulling over asking if I need help. “I’m fine, I just rode 5 miles or 10 miles,” I would say. Within a year I was doing hundred mile rides and back to climbing to the top of Mt. St. Helens.  I had three really great years.



About two years ago I started getting massive headaches that would last for a week or two. I could not function at all. I continued riding for a year with frequent headaches. My doctor had advised me to cut back on my riding when they first started, but cycling was my life, and after a year of pain I gave in and stopped riding more than 10 miles a day and no racing. No one wants to go 8 mph when they can go going 22 mph!

That was a year ago. This winter was very depressing. My pain levels were out of control and I had to ask the doctors for some medication. It sucked being back on pain pills. My mental health was really going downhill. I had lost most of my hope.
 
I broke down and started a fundraiser to raise money for a recumbent bike. Because I had operations on my neck, and had a feeding tube for so long, seventeen years too long, and had lost too much muscle mass, the riding position of my road bike was hurting my neck. The recumbent fixed all of that.
 
Instantly I was back in the saddle. Within a few weeks I was up to doing four 40 mile rides in ten days. The world went from a dark painful place where I saw little hope to one where I could dream again, dream about adventures, and a better life for my daughter.



Because of my recumbent bike I was able to stop taking the pain medication and will be doing my ride pain medication free. I still have pain, but no pain while cycling and nothing feels better than a fifty mile bike ride. 














So I planned this project: the film and the ride to make it happen.  It started with the burning desire to ride every day and ride far, and I realized that if I can do that while accomplishing something even greater, than so much the better!  I started talking about the ride with a few of my Facebook friends who wanted to connect, and then I realized that this trip could be so much more and I decided to make it an Epic Adventure and turn it into a documentary about our lives.


Thankfully a few believed in me and Atos Medical put up money and medical equipment to make a 30 day ride happen. With this small ride I hope to gain enough momentum and gather enough support to spend a year or two riding around the entire world with my family, completing the filming for a feature length documentary along the way!