Stage IV Colon Cancer & Building an RV-8

After many years of dreaming, turning a garage into an airplane factory, I started my RV-8 build on March 31, 2015. Within two weeks I started experiencing abdominal cramps, being unconcerned until one day they were stronger than previous and persistent throughout the day.

X-rays at an urgent care center suggested a bowel blockage and trip to the ER. More x-rays and a CT scan but the ER doctors couldn't pinpoint the issue. I was admitted for further evaluation. Three days later a GI doctor called my room from his home at 11:30PM saying, "Something is definitely wrong." A colonoscopy was performed and a cancerous tumor discovered.

Surgery to remove the tumor, a section of the colon, an appendectomy, remove lymph nodes, and liver biopsy was performed. Several infections developed and I remained in the hospital for four weeks with chest tubes and another fluid drain (OUCH!), followed by three weeks of home infusion with three self-administered antibiotic IVs each day (via a PICC line; I'm hooked up as I type.) Pathology results confirmed colon cancer having spread to all nearby lymph nodes and a small liver lesion. Having metastasized to distant organs I was diagnosed as Stage IV.

Internet searches suggested a 39% 2-year survival rate, and only 7% 5-years after diagnosis. My first two thoughts: 1. Family - We've planned, but should visit an estate lawyer to verify. 2. Will I have time to finish and fly my RV-8?

My oncologist said to ignore statistics; I'm relatively young, in otherwise good health, should respond well to chemotherapy, and numerous options exist to rid my perfectly functioning liver of cancer. He has patients whose cancer was much more advanced than mine living normal lives 8+ years after diagnosis. The American Cancer Society says some Stage IV patients can be cured, and I meet much of the criteria. Youth, health, available treatments, and the discipline to follow strict diet and exercise regimens are in my favor.

A forthcoming PET-CT scan will provide tremendous insight into the extent of the cancer. Colorectal chemotherapy treatment is relatively mild and I'm told to continue to work and live normally. Diet, exercise, and a lot of spring water will enhance the impact of the treatment. I have an appointment to receive a 2nd opinion from a premier GI oncologist at the world renowned Moffitt Cancer Center which is a mere 15 minute drive. Despite the unfortunate diagnosis, optimism exists. I'll go forward with the attitude that I will at least beat this back to a NED (No Evidence of Disease), though hope to be fortunate and diagnosed as cured. If there is a mere 1% chance of cure, that’s my goal.

Only 2.5 weeks into the build, the experience has been fantastic. I continued to learn new techniques, use the tools, workspace organization, and more. Time flies when I’m building. I become intensely focused on each task, making sure I’m doing it right, and with quality. When I thought I’d spent 1-2 hours building, it was 4-5! It’s been awhile since I’ve enjoyed something so much that time would fly that fast. The build must go on! It should be therapeutic as I need to remain active.

While lying in a hospital bed discussing what should become of the RV-8, everyone agreed that the build should continue as planned. A friend confirmed that if in remission and otherwise healthy, I can receive a 3rd Class Medical. If not, the RV-8 has two seats, so I can still fly it. I’m sure I could find someone ito assist with Phase I operations, and they and others may also be interested in flying with me so I can experience the results of my efforts even if I cannot act as PIC. Of course I hope I can act as PIC and fly solo as well as take family and friends up, but it’s not a reason to halt the build not knowing whether that will happen. The goal is that it will.

My father and I recently attended our first EAA Chapter 175 meeting here in Tampa, and I’ve been a part of the VAF community and seen them band together. Worst case, I’m not able to finish the build, I bet some EAA and/or VAF members could assist and at least get my family up in the air to finish the dream, and then decide what to do with the plane.

While the build should continue, but should it “continue as planned?” Upon returning home I have spent a little time in the workshop on small tasks, even with the IV connected! I long for when I have the energy to endure hours at a time, and I hope and expect that to happen soon once the antibiotics treatments are complete. But when that happens, how to proceed?

I believe I can get through the empennage and wings before I have to make any serious decisions, but aside from the cancer I have learned from “Dr.” Dan Horton that I am likely afflicted with “opinionitis,” not wanting to miss out on any “optional improvements” rather than what is known to be reliable and serviceable.

I love Dave Stephens’ RV-8 with the Showplanes fastback and cowl. I also love Bastien’s cockpit. So, given my affliction with “opinionitis,” my dream is a:

RV-8 Slow Build IFR with:

• Showplane’s Fastback kit
• Showplane’s cowl
• Sam James or similar plenum
• Titan R-360 200hp engine
• Whirlwind 74RV or 200RV propeller
• Grove airfoil gear and wheels & brakes
• JDAir Tailwheel
• Dynon Skyview avionics
• AircraftWraps vinyl wrap based on Vietnam Ace Richard Stephen’s F-4D Phantom II paint scheme

Get everything to work and I’m sure she’d be an awesome bird to fly! But, so many non-standard modifications. How much extra time to get into the air? How much extra money? How much added frustration? But employing Dr. Dan’s prescription, and given my situation, might it be more prudent to go with:

RV-8 Slow Build (really want to bang every rivet but could change with cancer prognosis) VFR:

• Stock Van’s RV-8 kit
• Lycoming XIO-360-M1B 180HP (from Van’s)
• Hartzell Composite or Blended propeller (from Van’s) – Might even consider a fixed pitch to further reduce complexity.
• Probably stay with above choices for avionics and vinyl wrap but with more simplified installations

Sticking with Van’s plans I’ll likely get into the air faster with less work and frustration and money. Might not be as slick or fast, but still a much better performer than anything that I have flown to date.

Sometimes life can throw something at you that you’re entirely unprepared for, but one must adjust accordingly. I’ve got a heck of a fight ahead of me and a lot of unknowns, but in one form or another, the RV-8 build is going to continue.

Chris

We will close ranks, brother

Chris,

Wow. The cancer diagnosis really sucks. That said, we are a big family here and I know I speak for all my brothers (and a few sisters) to say that we will be with you every step of the way. You already know the formula; work on it every day, even if it is just 15 minutes, even if you have a tube in you.

Also, check in with us here every day (or, like the rest of us, at least 3X per day) It will keep us all motivated.

If I can give my own piece of advice, it would be build as stock as possible. Going off the trail leads to indecision that can derail the best project. Besides, a lot of the bells and whistles can come later, much later, in the build.

Don't hesitate to call, write or just scream out. All of your brothers here will be there for you. Whether to answer a question, give an opinion, lend a hand or just listen and be there. My cell is 404-310-5128.

Now get off your *** and go drive some rivets.

Steve

Keep up the fight. A guy I work with went through the same thing. He was diagnosed stage 4 also and given a small percentage servival rate also. He learned every thing he could about his conditions, made changes to his lifestyle, and after five year not only is he still with us he is cancer free, holding a class 1 and is in command of a part 121 airliner. You have a hard fight ahead but don't loose faith. Attitude is a very large part of it. Good luck, keep fighting and building. Our hopes and prayers are with you.

Bob burns

Ya

Screw cancer! Build on...

All the best.... I have had friends diagnosed with what they thought was a life sentence and many years later they are still doing great. Dont give up, dont give in.

You have an RV to build.... and fly. All the best.

I'm just across the bay in Clearwater. Anything I can ever do to help, just pm me for my number.

-another Chris Johnson

Story sound exactly like my dad

Same story as my dad and he lived 5 years past the statistical end. Liver tumors and all. And that was in 1999 when technology was older. He did change his diet and life style, still stayed stubborn as always.

I agree, keep the airplane stock and simple. Any deviations add logarithmic levels of second order consequence and frustration.

Get your *** building and living. Have your family help and enjoy time with dads favorite hobby.

Thoughts and prayers.

One more thing

Go to Oshkosh, huge motivation boost. We are a big RV family and our reunion is in Oshkosh. See you there.

Focus

Chris
Your brothers and sisters here at VAF will be thinking of you every day. Never loose focus on your goal. When that evil voice tries to speak up, chase it away.
If you need an extra prayer, just ask.
Build on

What did I tell you about the bros.

I second what Bugsy said. Get yourself to OSH. I have rented a house and you can bunk with us. I'll wager one of your fellow Floridians can haul you up there in something quick and aluminum. See you there!

Yup! Check your PM for my own experience.

Build on, Fly on!

Chris,

I'm sorry to hear about your diagnosis but keep this in mind:

My Mom was diagnosed, at the age of 54, with stage IV endothelial cancer. It had metastasized from its original location and the prognosis was not pleasant. She started on a course of radiation treatment augmented by chemo and fought as hard as she could, keeping a positive attitude every day. She approached every treatment with vigor, knowing the physical effects would bring her down, but never stopping with the positive attitude.

This was in 2003. She is now approaching her 66th birthday with a bright outlook on life, with a newly rebuilt home that she and her husband renovated from a stripped out shell. She is a bit worse for wear, but she is still around and as full of vigor as ever. I firmly believe that, while she had some amazing doctors who had wonderful technology at their fingertips, her positive attitude and determination were absolutely key in her survival. The cancer came back three times, even making its way through her lymphatic system, but her doctors and her attitude have beaten it back every time. The treatment options and technology they have now are really amazing.

Stay positive, look for opportunities to stay busy (the RV-8 build for you, like her house renovation, will provide a major project). Do whatever you can to keep your spirits up, and eat well, visit with friends, take trips when you can. The determination to stick around, in my humble opinion, can make a huge difference. I think my Mom proves it.

Take care, stay positive, and I'll keep you in my thoughts.

Knowledge and attitude

A good book worth reading given a stage IV diagnosis:

Radical Remission by Kelly Turner

I think you might find some of the commonalities between stage IV survivors with NED worth consideration. It's a fairly quick read. It's not snake oil or a miracle cure. It is data driven research presented in a very straight forward format.

As someone who lost about 8" of my colon 6 years ago, I know exactly how you're feeling at the moment. Keep your chin up, your food down, and your eyes on the horizon.

Best regards,
Steve

I had an employee who had left to work for another company and then returned to Memphis...why? He told me that he had returned to die. Same diagnosis. That was in the late nineties...he's still here and as active as he ever was. Since that time he's written three novels, runs a charitable organization and preaches church on the side. If you ever want to talk to someone who's been there and done that, I'll hook you up. I KNOW he would be delighted to talk and help.

In re: your kit. Yes, going by the book and as simple as possible will make this move faster and moving faster generates motivation, but it's not as simple as that is it? The key is the identify how to get the max pleasure out of your build and the answer to that is different for each of us. I really enjoyed thinking and scheming on my avionics and electrics...I know others who hate it. My suggestion is to identify the parts of the build where you won't dislike thinking about it when you can't build. For example, you talk about the R series engines from Titan. Those cylinders are probably going to be an issue whe you get to the baffles. If you like metal work, then great. For me, I'd hate myself for going that direction when I discovered that I had to reinvent that wheel. Pick a limited number of areas for going your own direction, make sure they are areas you have some passion for. Be careful with going off reservation too far on your FWF section. They are all connected like dominos.

Chris,
I lost both my parents to Kidney Cancer. My Mom at 58, my Dad at 80. I know I'm probably pre-disposed to getting it as well.

Live your life & keep up the fight.

I'm located in St Pete, but work in Tampa.
Fell free to send me a PM with your contact info. I would be happy to stop by after work & lend a helping hand.

Chris, my brother,

As on relatively young cancer survivor to another, I feel for you. I had a pancreatic neruoendocrine tumor two years ago, hopefully cured via Whipple surgery. I'm back at the helm with a Class 1 medical, contemplating an RV-10 build.

Those PICC lines suck, don't they! I think at the end I just gave up showering. Too much trouble.

You have a great attitude. I wish I had the same as yours. On your bad days, remember that your family is not responsible for your attitude or happiness. You are. They will help you, but the fight comes from within.

Reach out when you are sad or need help. PM me for my number. Put it in your phone and call anytime. There are tons of resources out there to help people like you and me.

I don't have the faintest idea what it's like to build, but do whatever you need to do to live and love life.

Prayers headed your way.

Ben
R1

There's a good chance that positives in your life, like the RV-8, will improve your odds - not to mention making life more fun!

Hang in there and don't quit living, even if the docs sometimes have to change your style for a while.

Ed

Chris, good luck and my thoughts will be with you and your family during this difficult time.

This sounds like we an "RV" morale booster get togther in Tampa!

A bunch of RV's of all different types and options to give you idea's.

Throw us out a date when you feel up to it and maybe we can make a lunch run to Tampa sometime soon!

Having something positive to focus on will be a great thing for you. Building is a journey and there is great satisfaction (an lots of frustration which is why getting it done feels so good) to be had by completing major and even minor milestones. If you enjoy building, then go spend your time doing what you enjoy. I wish you best of luck. I don't really know part luckl plays but it sure can't hurt.

I just spent the entire afternoon riveting on my aileron mounts to the rear spar only to find after finishing that my rivet set was incorrectly labeled (it was a -5, not a -4 but I got it really cheap!!) and it squashed and ruined every rivet.

Somehow I feel a little less sorry for myself than I did 5 min ago....

Chris, I am so sorry for your diagnosis. When I read it, I thought to myself that is the same stuff they did to my dad in 1983. He was 58 years old and just turned 90 in January of 2015. He is a 32 year survivor, and still plays golf twice a week. He got his class 1 medical back five months after finishing chemo and went back to work flying Gulfstreams. You will be in our prayers.
Kevin

Thank you!!!

Hi All! Well, to say that I'm overwhelmed by all of the replies would be an understatement. While I don't think I can respond to everyone individually, let me say thank you so much for the thoughts, prayers, advice, encouragement, and survivor stories. There's a lot of inspiration here and I'll use it all.

Fortunately I took an RV (terra firma variety) to Oshkosh last year and spent the week. It was definitely inspirational and a lot of fun (not to mention exercise!) Being in Tampa I make it to Sun n' Fun too, though unfortunately in the hospital this year. I won't be able to get to Osh this year as I'll be on chemo.

I've definitely continued the build and spent a few hours on the vertical stabilizer yesterday. I agree, and do try to get in the workshop even if I'm not feeling great, and even if for only a few minutes at a time. It's one of my own prescriptions for recovery as it keeps me active and is an outstanding distraction.

The cancer experience and survivor stories are wonderful to hear and provide even more hope, inspiration, and keep the attitude up. Yeah, PICC lines suck (hooked up again now - but better than needles!) and showering difficult; I'm sure the chemo port won't be much better. But, it's all part of the battle toward recovery and I'm embracing anything that helps me get there.

Consensus is definitely to build to Van's plans and use proven components. Right now I think that is the way to go, though by the time I get to the point that I have options I'll know how my recovery is progressing and might try something different as maybe I will enjoy that process as well.

Again, thanks to all for everything. I'm on VAF just about every day and will get back to posting on My RV Build Project thread and also provide updates here as I receive news and achieve milestones.

Chris

Bugger - a lousy thing to happen. No one can tell the future with certainty.
If circumstances permit, the definitely keep biuilding. Great way to live life to the full.
Your family can hopefully help with build and get great family times and memories for you all.
Best of luck, and if any of us can help we all will be pleased to do so - even if from a fair way away like me!
John

Stage IV

Hi chris.
Just to let you know. Not all stage IV are equal.
If they can remove all the lesion in your liver the numbers are much better.
But again your dr is right. You are not a pourcentage, you are a person. Some have lived much longer than we could expected. Some have spent all their money because the dr said that they will never be cured and came back and said that now they are cured and alive but have no money .
Good luck.
Vinh

Ordered the Book

horndesign said:

A good book worth reading given a stage IV diagnosis:

Radical Remission by Kelly Turner

Click to expand...

Hi Steve - Ordered from Amazon. - Thanks for the advice! Chris

Chris:

I suggest getting to know this guy's story:

http://www.epatientdave.com/

It sounds like you're doing many of the same things but what impressed me most was how he took advantage of online communities of patients with similar diagnosis and received state-of-the-art curative treatment. Remember that any published outcomes data are years behind - it takes years to get the data and then substantial time to publish.

I've met Dave and his doctor - quite an encouraging model of healthcare in the internet era.

Best of luck with the cancer! Don't give up on the build, it will give you something else to think about and look forward to!

Please keep us updated on both!

PS. If you just need to get a way, check out http://www.windriverservices.org/. Some friends of mine run the place and there is no cost. It is a place to get your head in the right place for the fight ahead!

Fight the good fight, my man! You've got a VAF family behind you the whole way! Keep building, keep flying. It's not a death sentence; it's an incentive to live.

Hi, Chris

I'm an orthopaedic surgeon over in Clearwater (actually Largo). I might have a little insight into treatment. Call or PM me if you wish
727- five four three- 1658

HI Chris
First off I'm sorry to read about a fellow RVer being stricken with cancer but don't let that stop you! I was stricken way back in early 1977 at the young age of 19. I was just out of AIT training for being a military Policeman. Lots of life since than and am still here after I was told to pack my things and get all things in order(still haven't done that). So there is hope and don't let what others say about not being able to do anything! I just finished my 8A and having a blast flying it now it has over 55 hours and loving it!
On another note my buddy that I was helping finish his 9A got the same diagnoses and he's doing the same as me! Now of coarse this is all after surgery and all the test and doctors exams. For me it was many years and him just a couple of months. I even still have a third class medical. Just go and do it and don't take any **** ,you have a life to live after cancer so push on!
Scott

Chris,
Just saw the post, have faith and know we're all praying for a successful out come. Keep on living and fighting.

You've got the best physician looking down on you guiding your Doctors
Smilin' Jack

illegitimis non carborundum

Keep on fighting.
Prayers to you.

Update

It's been a long time and much has happened. The support on VAF has been fantastic. In fact, one VAF member, Michael Tippen used to live across the street from the CEO of Moffitt Cancer Center here in Tampa. He got me hooked up with their Executive Program and we made the move to Moffitt. What a community!

Since my last post I was back in the hospital twice. First because of a botched chemo port implant surgery resulting in an infection and surgical removal of the port. Then a botched PICC line insertion resulting in a Pulmonary Embolism. My doctors agreed neither should have happened, so we moved to Moffitt.

While I finished the vertical stabilizer, I may be moving to something such as the Sonex Xenos. It's a Motor Glider and does not require a medical to fly (as always, one must self-certify their medical condition prior to each flight). It has 120HP, 140 MPH cruise, 2,000+ FPM climb, and is aerobatic. It's construction is similar to the RV-8 so my workshop and tooling will all be used. It's not an RV-8, but a great alternative.

While LSA has become so popular, the Motor Gliders seem much more flexible as they don't have many of the LSA limitations, but that's just my opinion per my recent research. (LSA is not an option for me as I reported taking eye drops for elevated eye pressures. My medical was denied with a time limited special issuance granted.)

One way or another I will build and fly, and I will continue to fight this disease with everything I have. The tremendous support I have received from family, friends, including VAF, has been incredible and I know will continue to be invaluable.

Prayers

Wow. You are an inspiration Chris. Prayers will always flow your way.

Keep up the battle!!

The Sonex family served me well when I built a Sonex. You won't go wrong with a Xenos.

The Moffitt family served me incredibly well when my wife of 30 years was diagnosed with Stage IV metastatic melanoma in 2007. She survived for almost 6 years, against all odds, in large part because of the care she received at Moffitt.

You are in good hands, and my prayers will be with and for you.

I'm sorry to say that Chris lost his battle on March 19th, 2016.

I didn't know Chris, but I wish I had.

So sad. Prayers for the family.

Sad to hear this. Condolences to Chris' family and friends.

Great Motivation Example

So sorry to hear of Chris's cancer diagnosis. But am so very impressed with his motivation to build on. I can't begin to imagine how it would feel. But his enthusiasm for getting the RV done is a motivator to me.

Agree with those who say, "Go to Oshkosh". And don't miss the Vans dinner Tuesday night. These are motivators for builders.

Sorry to hear about Chris's passing. Could be me. Condolences for the family and friends.

I was reading the posts and wishing for the best. I really hoped I would read about how well Chris was doing with his recovery. Prayers to Chris's family and friends.

Life is not fair

So sorry to hear about Chris. I was just thinking about him yesterday, and then this thread pops back up.

Chris's orginal post is errily similar to my story. But, so far, I am fortunate enough to have beaten back an early stage PNET. Less than 30 days ago, I purchased a flying 6A. It's not fair that I'm flying and Chris is not.


My brother, Chris, know that prayers are headed your way for peace and understanding.

Ben

[This is tough to do, but thread moved to a more appropriate forum; S. Buchanan]

Hoping memories of Chris's courageous fight will bring peace to his family....

Deleted - missed the post on page 4

Very saddened to hear of Chris' passing. He was a client, and I considered him a friend. His courage is an inspiration to all of us, and he will be missed.
Tom