Pancreatic Cancer - Living With The Consequences

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Mar 18, 2007
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Gold Hill, NC
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I've been pondering this post for many, many weeks, it's difficult to tell the story and ask for help. I first posted to ST-Owners in 2007 as I recovered from injuries related to a collision with a car in December of 2006. That wreck took me from my GL-500 that I enjoyed riding and put me aboard an ST1300 in early 2008.

During the first weeks of my tenure with the ST1300 I managed to put 16,000 miles on the bike as I worked in earnest to log some serious miles against the estimated 175,000 it would take to complete my "Ride Around America." The goal of that project is to visit all 3,059 counties of the lower 48 states and to document at least one veterans memorial in each. To date I've ridden well over 50,000 miles, photographing about 1,000 monument areas in about 700 counties. I've still got a long way to go, and that's why I'm posting here today.

At the end of 2008 a recurring problem with my pancreas got serious. I was diagnosed with Intraductal Papillary Mucinous Neoplasm (IPMN) - a very rare form of pancreatic cancer. The preferred method of treatment is to resect (remove) the damaged part of the organ and in some cases move on to radiation and chemo.

I was relatively lucky with the first go 'round - a little over half of the pancreas was taken, along with my spleen. For the purposes of riding the news wasn't that good. I spent several months either not riding, or riding only a limited amount. Any distance over 200 miles required a bulky abdominal truss and a good dose of pain killers. Regardless of that, I was still able to cut the list of undocumented counties when away from hospital stays.

Several more in-patient stays for various complications put a damper on a concentrated effort to finish the project. But I was relatively young and could rely upon what my doctors told me was a long life expectancy. I was happy with some progress, even though it wasn't what I had first envisioned.

Early last winter I went for another of the monitoring scans now required by my condition. That was quickly followed up by an upper EUS - a tube shoved down my throat into my stomach with an ultrasound attached. Two days before Christmas a VA doctor called to tell me the biopsy revealed "evident colloid carcinoma." Cancer again, but in a more advanced form.

In January almost all of what remained of my pancreas was removed. Clear margins were not gained during the resection. Cancer cells remained. A six week course of concurrent chemotherapy and radiation treatments were scheduled - but not before I went back into hospital for a week to resolve a bowel obstruction. One of the adverse effects of many surgeries are adhesions that cause things to stick together at the most inopportune places and times.

A month ago I finished the radiation. My primary oncologist revealed this particular form of carcinoma is very persistent. According to him, it's not a question of if it will return, only a matter of when. His time line estimates are not encouraging.

We talked about the time line and the discussion centered around what meant most to me. I've got a large family, with three adult children and 11 grandchildren. There's a young man sniffing around my oldest granddaughter and I suspect the first great-grandchild will be here in another year or so. I should be content just enjoying them, but my nature is not to sit in a rocking chair telling the youngsters what it was like "back in the day."

I told the doctor about Ride Around America and how it was not about me, but it was all about remembering and honoring our veterans, and educating others - telling the stories of those names found etched upon monuments around this nation. He understood and said, "Let's do the math."

Long story short, if I find a way to get back on the road NOW I probably have enough time to reach the remaining counties and the memorials they hold. Currently I am free of pain and other than being pretty bummed over the whole thing, I'm doing well. I did a 250 mile non-stop run a few days ago and tolerated it without undue problems. All I noticed was that the 30 pounds I've lost gives me a slightly different ride in the seat - my butt has to re-engineer those hard spots I had developed before this last operation.

Forgive me, this post is going on much longer than I imagined, but I have to explain all of this as I ask all of you for some help.

Obviously the goal of this ride is very important to me. I'm a veteran myself. I come from a long line of veterans that goes back to the patriots of the American Revolution. Three of my ancestors are listed in the DAR/SAR Book of Patriots, and one of the in-laws of that generation was Maj General Henry Knox - the first Secretary of War.

I think it's important that the younger generations be given every opportunity to learn about the individual sacrifices that have given us a free republic and have maintained it for more than 225 years. These sacrifices have to be placed into context. They are not just names etched upon a memorial. These are stories of courage, deprivation, endurance, and patriotism. They are the stories of YOUR ancestors and for some of us they are the stories of those we served with.

While I have the good health to ride I need to be on the road; collecting photographs and learning about the hometowns of the fallen. Unfortunately, this is an expensive process and funding it personally as anything more than a casual effort is impossible on my monthly VA pension.

I find it distasteful to just put my hand out and say, "Please." That's why it has taken me so long to post this message. I would rather ask those of you that understand my mission to help me find a way to make this an honorable request.

Do you have a veteran you would like to honor by dedicating a memorial visit? Send me photos and background information - and tell me the county that you want to identify as your veteran's hometown. I'll format his or her story and photos on the introduction area of that county. Give what you feel is appropriate. Offer $20 and I'll mail you a 4" embroidered patch that commemorates Ride Around America.

Do you know of a civic club or riders group that would like to host my presentation about the project and my personal experiences during the ride? Let's set it up as a stop during my next outbound or inbound leg from North Carolina.

Are you aware of a local business that would help with an inexpensive sponsor ad? Put me in touch . . .

If you want to ride with me for a leg or two, let me know. I don't want to turn it into a parade, but having a local or two along with me helps shorten the time it takes to locate and document a memorial in your county.

Wednesday the 27th I'll mount up and ride a three day trip to finish the last of the South Carolina counties and visit a few more of those in Georgia. Send me a message or email if you want to ride a few miles with me. I'd enjoy the company.

I post this reluctantly. I don't want the thread to turn into a long, overly involved, saga talking about me and how I cope with cancer and the ultimate outcome. I would, however, be pleased if those of you that feel inclined to say something in response - post a story about a veteran. Or, if you are a veteran yourself, tell us about your experience. There are many active duty and veteran riders on this board - I'm proud of all of them and pleased to acknowledge them.

Thanks for you time and attention -


See photos and stories at www.ridearoundamerica.com
 

ToddC

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Lee, keep fighting the good fight.
It makes me happy to see people like yourself who honors those who gave so much. When you get to WA State let me know, I would be honored to ride with YOU.
And I will help anyway I can, good luck and keep on ridin.
ToddC
 
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Sounds like a great project. Have you considered one of the crowd-funding sites on the web? Surely some of the other members here can help direct you to these (I don't even keep track of them).
 
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It is an honor to have you on this site and share your experiences. First I cannot image riding and visiting all of the memorials you speak of. WOW. Second I find it amazing that your health issues seem to be more of an inconvenience interfering with your project. I wish you the best on getting healthy to finish your project.
 
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Lee, if you are coming to the north Georgia area and need overnight accommodations for several days, you are welcome here. It would be an honor to ride with you. If you have already finished the counties in the north end of the state, PM me with info to make a donation... couldn't get the link to work....
 
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LeeWonnacott
Joined
Mar 18, 2007
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Gold Hill, NC
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Stopped at a rest area yesterday in South Carolina. Met two guys on H-D's, one hauling a bunkhouse trailer. First one, Tom, walked up to ask how the day was going and said he and friend were on another of their annual BAMR's. Then he explained that mean "Big ***** Motorcycle Ride." His buddy had started last week from Seattle and ridden to Lexington, KY to collect Tom for the second half of the ride - enroute to Key West. Tom said that once crossing the Florida border he would have ridden in all 50 states.

Best of the story is that both riders are in the late 70's and Tom is fighting bladder cancer. We all agreed it's about the ride and what's found along the way, and it's always better not to dwell on the physical problems - they just get in the way of a good time.

Thanks for the comments and encouragement. I'll post when possible.
 
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LeeWonnacott
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Mar 18, 2007
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258
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Gold Hill, NC
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ST1300
Have completed about 4,000 miles in the last month. Did a round trip to Pensacola to dedicate a Florida Heritage Site marker for the USCGC SEBAGO. Got nearly three dozen counties in Georgia and another 15 or 20 in Alabama and Florida. Went out again during the last week for six days and 2,100 miles that got another 20 in Georgia and completed the last 20 of the 67 counties of Florida.

Home for a week or so to get some maintenance done and then out again to do more of Georgia and Alabama. Planning on taking the winter to work the southern counties of Louisiana, Mississippi, and Texas. Averaging about 300 miles each riding day, tenting out three nights of every four. Back sometimes complains and the old left shoulder injury too, but the recovery from surgery seems positive - very little abdominal pain. A quick two day visit to VAMC at Durham two weeks ago shows I'm currently cancer free... if those little cells stay away for another 28 months I think I can get this all done.

See you on the road - noticed two or three ST's in the past week and last month the parking lot of the Tuskeegee Airman's museum was FULL of ST1300's - only two vehicles in the lot and both of them were 1300's ! Interesting talk with the other owner.
 
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ibike2havefun

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Thanks for the update. I had been wondering what was happening since there had not been news for a while.

Hope all goes well, both on and off the bike.

Keep me in mind when / if you point the front wheel toward Maryland.
 

STraymond

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Fantastic news on the lack of cancer! I pray for your continued health and the strength to complete your honoring quest.
 

ibike2havefun

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Having just re-read the original post and the request for veterans to honor, it occurs to me that there is a veteran I particularly want to honor, none other than my own father. His military service consisted mainly of being an occupation troop in Germany following World War II. it was an unremarkable stint, but he served.

He was deferred on the initial draft in order to run the Kansas farm where the family lived at the time. His older brothers were already away from home, one training to be a doctor (he eventually became a Flight Surgeon) and the other studying chemical engineering and preparing to go to work in the munitions industry. His next younger brother was not yet quit old enough to run the farm on his own, so Dad remained at home for a couple of years before answering the call.

He trained as an infantry replacement and arrived in Europe in February 1945. Before his unit moved up, a sergeant from a heavy artillery unit down the road came by looking for a couple guys. And so it was that Abner, Ackerman, Adams, and Baker fell out and went to another unit. The artillery went into reserve and saw no more action, but Dad's stint lasted until 1946 or '47.

He "guarded" displaced persons camps, mostly protecting the inhabitants from the civilians more than anything else. As you can imagine there were a lot of munitions lying around and some folks thought it grand entertainment to chuck a grenade into a house and watch all the Germans run out.

Among his other achievements, he introduced a number of the DPs to popcorn. They were amazed to think a small hard nugget could somehow puff up to soft delicious goodness.

Between Depression-era dirt farming in Kansas and his time in the Army, Dad learned how to have a hard edge when needed, but it never changed his fundamentally easy-going and generous personality. You don't want to tangle with him in a serious situation, but you will not find a more caring, open, honest, generous man when you need one.

He's 90 now, and still in good health. If I can manage it, I hope to get out to his place in Illinois when the spring weather returns next year and take him for a ride on my ST. it'd mean a lot to me, and I know also to him. It was his love of motorcycles that lit the fire in me. He had one, for a few years when I was in my early and middle teens. It was not to my mother's liking, however, and he eventually stopped riding in deference to her wishes. I rode it for seven glorious weeks at age 18, then piled it up and did myself serious but not permanently disabling injury. That ended that, for both of us, until Mom passed in 2011.

Last spring, to celebrate Dad's 90th, the family converged on LaGrange Park, IL where Dad lives. I rode the ST out there so that he could see it, but being a novice rider was not comfortable with taking him for even a short ride around the block. So that will have to wait.

Over the 4th of July weekend in 2014, the local Harley dealer in Dad's area sponsored a veteran's event. Any veteran wishing to participate was collected by someone and ferried by bike (or in Dad's case, trike) to the shop for a barbecue and celebration. It was the high point of his summer, I think.

So here is my request: if you happen to be striking in the direction of Cook County, IL, could you maybe stop by Dad's place and look in on him? He'll gladly tell you stories of the Army and his time in it, and he'd love to get a few minutes of pillion time. I'll gladly contribute in a material way to help that happen.

The proper veteran's memorial for him would be in Clay Center, Kansas, as that was where he lived before and after his Army service. You won't, I expect, find his name on any sort of plaque or monument; he was just one of millions of grunts, after all, and one of those fortunate enough to have returned without being shot at or wounded or killed.

Thanks again for the project, and Godspeed in your journeys.
 
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Contact me when you get to Missouri/Kansas. I'd be glad to help you find the places you're looking for and share a meal.
 
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LeeWonnacott
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Gold Hill, NC
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if you happen to be striking in the direction of Cook County, IL,
It would be my pleasure to stop and chat with him for a bit. The occupation forces of that had a hard standard of appearance and demeanor to meet and it wasn't always easy to please the command officers who were constantly pounded by senior command to "keep the troops in line." I documented a memorial last week in Ocilla, GA at which about 50 members of the "Berlin Brigade" were remembered. It's unusual for so many men from one county to have gone to the same unit that I wondered if they were part of a reserve call up. I've still not been able to find out the details, but looking at the information of the Berlin Brigade gave me a new understanding of what it must have been like for those soldiers to serve in Germany in that time.

PM to me with photos of your Dad and I'll get a county page set up and dedicated to him. Thanks for your story.
 

John Anthony

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Lee,

Let me know when you're in the Seattle area and I'll try to help support you in any way that I can. My oldest brother has been dealing with recurring cancer for the last several years. Sounds like you've got the attitude to prove your oncologist wrong.

John
 
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LeeWonnacott
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Lee,

My oldest brother has been dealing with recurring cancer for the last several years. Sounds like you've got the attitude to prove your oncologist wrong.

John
In the long run, I'm sure he will come out correct in his assumption - BUT Duke University and five other research units have joined forces to seek a path of immunotherapy treatment that would simply turn off the gene that causes the recurrence. We talked about that, and because I'm a VA patient, it might not be an option in the near term. If it stays away long enough their research may get beyond clinical trials before I would need it - at that point VA could possibly allow patients to enter into that program. But it's very expensive and VA would ponder it for a long time. That's another of those long, convoluted, political discussions about where government finds the money, etc etc etc. I'm not complaining about that, they have already spent a ton on me and have kept me going longer than I could have done for myself. Just gotta hang on and this ride is a way to focus.

Last time I was in Seattle was October of 1968 - I was enroute to my first duty station, north of Nome, Alaska. Spent a full year at the Arctic Circle without leave, liberty, telephone, television, radio, or recent newspapers. I'm looking forward to visiting Seattle again, but I don't even want to contemplate returning to Alaska - 12 months in one lifetime is enough.

See you when I get into your area.
 
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