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Cancer Update, 03/16/2012
Posted in My Background
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Cancer Update, 03/16/2012
I have not posted on this blog; in fact, I have not posted on any of my outreach for two and a half months. On December 23 2011, I muscled through the new pain the cancer started generating to finish the last post here and have been unable to concentrate to any degree and produce anything I felt worthy of your time to read. Let me bring you up to my world beginning during the last week of February 2012, and begin the update looking back from that date…
Test the previous week showed the tumors, all the tumors had increased in mass by about 10% over the previous sixty days…. That Friday was a disappointing day. The new, much sought after drug trial open enrollment date first opened on 02/28 with only 100 sponsored positions worldwide was moving out of reach. On the day, I was to receive my first infusion, my lymphocytes tested low at only 400, and without retesting above 1000, I was not going to be able to qualify. Before retesting during my afternoon appointment, I walked around the multilevel hospital complex 2 times. I walked around the complex of buildings in a clockwise direction and used the stairs to move up to Upper-Street levels of the Hospital Campus built into the hillside, instead of taking elevators.
I returned to the sixth floor then the nurse drew new vials of blood to retest levels but although I tested 500 points higher at 900, I did not reach the 1000 mark. I rescheduled my next appointment for the following Tuesday. Given a measured increase in lymphocyte counts by simply walking I vowed to work as hard as I could on my treadmill over the weekend to achieve the highest readings my body could produce through the diseased lymph nodes. Push, push, push, I told myself each time I neared the end of each programmed walking cycle pushing to walk an additional two minutes after I felt I could not walk any further.
Finely Tuesday morning arrived and before getting in the car to head for my doctor appointment in Portland, I jumped on the treadmill for a last quarter-mile push.
We needed to go in and out of four-wheel drive several times that morning to drive through the snow and ice from the final winter storm dropping snow overnight on the route to Portland, which added an extra hour to drive to one hundred miles drive from my home on the coast to the Cancer Institute in Portland. We managed to arrive fifteen minutes before my check in time but the nurse called me back to an exam room only minutes after we arrived. I asked her if I could have five extra minutes to walk down the stairs to the first floor and back up to the sixth floor in a last-ditch effort to raise my lymphocyte count. The nurse asked the front desk to page her when I returned and off I headed down the stairs.
I rather laughed at myself after hustling down the stairs and I got to the first floor because I was not even breathing hard. However, when I needed to stop on the way back upstairs on the third floor because my legs muscles were burning and again on the fifth floor where I needed to catch my breath. When I made it to the fifth floor, I thought hard about ducking through the stairway exit door and returning up the sixth floor via the elevator to avoid the final two flights of stairs. I laughed at myself again because I knew if I could push up those last sixteen stairs, I could honestly say I did my best to do everything I could to qualify for the drug trial and I pushed on up the last few steps counting each one I climbed.
When I arrived back upstairs, my Kindle barley had enough time to open my most recent book to where I had left off when I heard my name called and back I walked to have my blood drawn for my last attempt to qualify for this drug trial. I was still breathing deeply trying to catch my breath when the first vial started to fill. I had a deep satisfaction knowing that if my count was too low now, it was not because I slacked off or cut any opportunity to raise my numbers short.
I know the comfort I feel fighting cancer through the joint efforts of the teams assembled there at the Research Center at Providence Hospital in Portland Oregon has been a contributing factor to the successes I have enjoyed fighting the disease over the last few years. As I sat in the exam room and I settling into the story line in my book, waiting for the doctor to get the results and to finish my appointment, it was only ten or fifteen minutes or so since the nurse walked out of the exam room with blood vials in hand. Then I heard a light tap, tap, and another light tap, on the closed-door. I said, “Come in,” and one of the infusion nurses cracked the door open and popped her head into the exam room to whisper her secret news to me. She gave me the thumbs up signal saying in a hushed voice the news, the test results… ”12.9″ and slipped the door closed knowing she had trumped the doctor and got away with it leaving me to do my happy dance until I heard another heavier knock on the door from the doctor. He arrived bringing the good news from the blood workup and knowledge that if I still desired to be part of this new “Drug Trial” the Cancer Institute was taking part in, he would be happy to get the ball rolling right then, right there.
Doing a vigorous “happy dance” in the confined quarters of an exam room is difficult. I managed success a successful proactive blow against the cancer that morning. I even managed to plug a skip in here and there, as I strolled on my cane from the exam room area. I worked my way to the infusion area across the building there on the sixth floor of the Cancer Center with a smile on my face where I picked a durable chair in which I could sit in for several hours as the new drug began pushing its way through the delivery pump and meters into my body… Working out as hard as I was able to over the weekend and the last floor I walked up the stairs proved to be worth all the pain and effort. As I sat there thanking God for being with me and providing many too many prayer partners to count who joined forces with the other people who provided everything I needed to get in that infusion chair, a thought occurred to me. At some point in the future, many of us will look back from Heaven at our time here on earth when we put in the extra study time in God’s Word when it was not the easiest thing to do and with an even greater sense of satisfaction and pride and experience greater joy than I was feeling right then. We can all be in Heaven someday and know “it” too, was worth “it”, all of “it”!
Posted in My Current Stuff
Tagged Cancer, Friendships, Holy Spirit, Hope, Ministry, Motorcycle, Motorcycle Ministry, Religion
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Time to Hit the Road, Literally
“4 Corners 4 the Cure” is the final name we adopted for the motorcycle ride we planned to spend five to seven weeks traveling during the summer of 2011. Our plan is a bold one, to ride our motorcycles to all four corners of America to raise money to help pay down our medical debts. We also planned to preach the Gospel when given an opportunity, and to try to bring a few words of wisdom to our fellow-men around the country that we are losing the battle against aging, disease, and many of us are dying too young. Because of our pride, many of us men are too slow to schedule an appointment with our doctors when something changes with our bodies. We just think it is a sign of getting older; our pride, the wiring in the American male brain cannot handle this fact. We cannot let our fellow-man in on the fact we are breaking, or broken, this socially leads us to keep our health concerns a secret and this information guarded. We plan to break this cycle with guided discussions wherever we have an opportunity to use our circumstances as an example.
On with the trip, the clock never slowed down and Joe’s insurance company did not seem in a hurry to spend any of the premium dues they collected monthly from his household. I could see Joe feeling a little anxious; he had hoped for a partnership with them in some way but had nothing to even to show attentiveness in any way they would make an honest attempt to get out in front of Joe’s new cancer battle site in his lungs. Week after week, we waited for the insurance company to authorize Joes treatments and then after that, would need to wait to receive the time frame for a treatment schedule from the planning department at the Cancer Institute in Portland. We hoped Joe could finish treatments in time to hit the road with us.
Our plan had us traveling together to Seattle Washington to the farthest north Harley Davidson Dealership in Washington State so Harley themselves could document our odometer readings at “The Sound” Harley Davidson Dealership and get the first corner of America in the bag. Our plan getting the first corner of America out-of-the-way as we started the trip to be a wise choice, as we anticipating how tired we might be at the end of our trip after riding all the way across the country from New England. Joe and I thought we could separate in Spokane, Washington on our return from the east coast via Interstate 90. We thought it could be nice to ride home unencumbered from a formation ride to book homeward for our first shower in our own showers in a long time as we closed out the trip. That is the beginning and the end plan for the trip. After our business in Seattle, our plan is to head south to tag our second corner of America down San Diego way in Southern California then join hundreds of friend for fellowship at our Black Sheep International Leadership Summit, (ILS).
Our Leadership Summit is set to begin on Wednesday night, May 11th 2011 at a little local Mexican Restaurant with an informal “Meet & Great Gathering.” The Hospital had not contacted Joe yet and knowing we needed to head on a ride four hours north to begin our “4 Corners ride,” we thought we could spend the night with one of our Seattle area Chapter Presidents and his family, the next day take care of documenting our odometers at the Harley Dealership then head south. From Seattle, the most accurate way to describe the best plan we could come up with, given the information we had in hand at that time, was that we were going to “wing it.” A few weeks later in New Mexico or Arizona, Dave could quietly say “Ping,” that one word condensed the entire thought process and all the necessary planning and conversations we needed to have before hitting the road for the next destination. More of the “ping” story later when I tell the “Story about our travels through the Southwest.” For now we are out of time, we need to hit the road if we hope to ride to Seattle before riding south to Southern California in time to make all the meetings at ILS , 1400 miles south and just five days away.
I faked my way a little bit when I met up with our North Oregon Chapter President and his wife to spend the night before officially launching the “4 Corners 4 the Cure” fundraiser ride. I put on a good face Thursday afternoon May 5th when I packed up and left my house for what I thought would be five to seven weeks on the road. I came back to Portland to spend the night Thursday night after driving my Jeep into Portland and back to get my last infusion of chemo a couple of days earlier on Tuesday May 3rd. My wife was able to break away from work to spend the previous week in Astoria with me She came with me to my doctor’s appointment Tuesday and sat with me as they did the blood workup to make sure my liver and other internals could stand the final dose of this new trial drug, now let me restate. To be infused by “THE NOW NEW APPROVED FDA DRUG!”
It took about five hours for the drive to Portland and back Tuesday and almost another five hours for the infusion protocol making Tuesday a very long day. Thursday, I drove to Portland and back again, to take my wife to the Airport to fly back home to Southern California so her attendance at work would stay unblemished and her overall productive time would not put her on the map when her company built their next layoff list. She has almost 35 years with the company and only a couple before she can retire. Both of us understand the impact not completing her full years of service has on her monthly income if she were to lose her job early due to a layoff. I have good weeks and I have bad weeks, I am still fighting stage four melanoma… there is a real chance, just looking at the numbers that I am not long for the earth. Every penny she can secure for her future retirement is helping to fill her living income requirements and help offset a future income shortfall in case I am not around.
Thursday afternoon, leaving Astoria for the last time this spring and I am now on the Motorcycle beginning the most challenging ride of my life. I spent a little time each day Monday and Wednesday to pack up a little early giving me time to balance the load I planned to carry for the next several weeks. All I need to do Thursday morning was to grab my medicine and toothbrush, pray for a break in the rain and head to Portland to stage my launch for the “4 Corners 4 the Cure” fundraiser the following day. Heading out I had EVERYTHING I thought I needed to carry on my normal life until I knew where I was going to be so I could have my next round of prescription burn medications and wet signature Rx prescriptions for pain medications mailed to me. One of my riding partners, Joe, planned to meet me in Portland after staging himself at his parents’ house there in town Thursday night and the other riding partner, Dave, planned to ride down to Southern California with his Chapter beginning Monday May 9th to attend our International Leadership Conference, (ILS.) He planned to travel with a few other friends leaving from Southern Oregon that day as well. Joe and I wanted to hit the northern tip of America on the west coast side before heading down to ILS and tagging the southwestern corner of America while we were there. This would get two of the four corners out-of-the-way within a week leaving better than a month to put together a real plan to get to, and document, our ride to the remaining two corners of America.
(-WARNING – Please skip this next paragraph if you do not want to know graphic details about the physical medical challenges I needed to cope with as I began the 4 Corners ride.)
I had a tumor begin to develop in February 2011, which started growing after tapping into a major blood supply in the upper inside area of my right leg. It developed a section, which came out from the tumor body, pressed like a finger under my skin, and rubbed “uncomfortably” against the saddle seam near the front of the motorcycle seat while I stood on the motorcycle at stop signs and red lights. We scheduled surgery and doctors made an incision on the inside of my inseam at the top of my right leg to remove the tumor and then I underwent three weeks of concentrated radiation in that area to irradiate any stray melanoma cells loose in the area. The incision had not completely healed, I still needed to wear a dressing over the surgery site but all the stitches, which need the surgeon to remove, were out by my departure day. The radiation treatments stopped only ten days or so before leaving on the ride and the full effect of the intense x-rays hitting the tender skin in that area began to accumulate. At first I experienced mild itching and a light sunburn developed, but within days of my departure, the most tender skin and the area most central to the tumor site degraded into a second degree burn requiring special medications and doctors wanted me to maintain a high level of sanitation practices to avoid an infection. The area hurt like a second-degree burn with multiple layers of skin scaling away every day until the skin in that area was raw. Only a couple of people outside of the two I planned to ride with knew of the pain and discomfort, my riding partners knew I had just finished chemo and radiation and were on the lookout for several different things about me while on the road, much without my fore-knowledge. At that time they rode hot on the lookout checking if I started to get dehydrated, light-headed, too tired, forgetful, disconnected, feverish, disorientated…
(I am finished with the medical details and it is safe to start reading the story again…)
We began our trip while an “El-Niña” weather storm pattern began pounding the Pacific North West with storm after storm and storm after storm. Week after week, storm after storm, and again and again, week after week. I departed from Astoria in full heated rain gear and spent the night in Portland where I listened to the strength of the storm gather stronger overnight. It cut loose Friday morning as it began to pour. Joe arrived at my friend’s house and we waited a little while for the rain to lighten up but it continued to rain harder and harder. Well, we had the proper gear. It was just after noon on Friday, we committed to an agenda starting Saturday morning in Seattle. Our plans also included meeting the Seattle area Black Sheep Chapters. We needed to hit the road!
Joe Leading Heading North in the Rain
Breaking Free Between Portland Oregon and Tacoma Washington
It rained and rained and rained even harder. Windshield wipers are shooting sheets of rain off car windshields while swiping back and forth as fast as the control circuit would allow them. It rained so hard I sat higher in the seat to put the face shields on my full faced helmet into the main spray off the front faring windscreen to get a consistent flow of fresh transparent rain water on it rather than the opaque disfiguring collogue of raindrops and road spray from car and semi-tractor-trailer tires. Midafternoon, we ran into stop and go get off work early Friday afternoon Olympia area traffic. My legs carry my weight pretty well as long as I plan to walk with the use of a cane to steady myself while walking on uneven surfaces. I can balance on the motorcycle, while maintaining decent side-to-side strength, holding the motorcycle up at traffic lights, but did not have any reserve strength in them. I lacked strength especially from the surgery area in my right leg. The heavy traffic on the freeway we stopped on forced us to stop on straightaways and corners alike. The freeway had a steep bank built into all the corners. I could steady the motorcycle on the straightaways OK, but on the corners where we need to stop and put our feet down, I had trouble holding the bike upright and starting up and maintaining the front wheel straight for the first twenty feet or so. My Chapter President was leading us at this time and he noticed through his mirrors, I was having trouble, so did Joe, Joe started blocking traffic for me as we stopped and started. In fact, I almost dropped the motorcycle on the right side several times when we came to a stop while on many of the banked freeway turns. Pride, pride again got in the way. I should have asked my friends to cancel this part of the trip or to go on without me. I needed to stop and get a hotel, I was too tired to ride safely anymore, and my legs were gone.
My legs, no stamina, gone, it started to get dark, we still had almost two hours of riding through the pounding rain before we arrived at our overnight destination. I started rethinking whether I was at all strong enough to attempt this trip. I had serious doubts concerning my abilities as my thoughts centered on my weakness… the motorcycle felt wrong. I was standing on my right tiptoe, flat-footed on my left foot. My headlight started pointing to the right on its’ own and I began to feel less weight on my left foot. My right foot was going to sleep; the motorcycle seat was cutting into my right inseam over the burn and throbbing incision. I started to realize the motorcycle was leaning to the right too much; at that moment it leaned past the point of no return. My brain began spinning, was I passing out? I found myself leaning to the right, I was riding side by side with another Black Sheep motorcycle on my left to give us better protection in our lane. I found myself in stopped, rush-hour traffic, riding almost on top of the lane line, ready to fall over pinning me against the driver side door of the car next to me. Panic, panic, the bike is starting to fall faster, I cannot stop it, what if I am pinned and the driver panics himself and hits the gas before any of my friends can come to my aid and pick the bike up off me… Adrenaline cuts loose in my bloodstream but still I do not have enough strength to stop the bike from falling, my right toe begins to slip on the wet paint on the lane line…. (Continued…)
Posted in My Background, My Current Stuff
Tagged Cancer, Friendships, Holy Spirit, Hope, Ministry, Motorcycle, Motorcycle Ministry, Religion
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Things Start Coming Together 2011
Posted in My Background, My Current Stuff
Tagged Cancer, Friendships, Holy Spirit, Hope, Ministry, Motorcycle, Motorcycle Ministry, Religion
4 Comments
Things Start Coming Together 2011
We did not have a savings account we could draw from to pay for any aspect of the trip. Joe and I were talking at one point, almost laughing in joyful amazement as God revealed some of the mountains He moved out-of-the-way to place us where we were. I think we were in North Central New York State at new friends’ Phil and Linda’s house when the memory of an earlier conversation resurfaced. The new heart attitude we traveled with grew during the time we had that revelation in New York where it had become a whole new way of thinking, much different from before the beginning of the trip when we first hit the road during the first week of May 2010. There is a whole story unto itself that fits between them, our original attitude and the new attitude. I need to insert that part of our feeling about money, both making it and spending it, and how that plays into the story before I move on.
Joe shared the “Joy” he is getting when he realized either one of us, earlier through our separate, successful business we operated a handful of years earlier, could have easily written a check to fund this entire dream. If we had heard of a couple of guys presenting a vision for a trip like we were now living “right then, right there,” both of us would first pray about whether or not we should become involved. The question of being obedient with the means we have and whether God wanted us to be involved was first to be considered. At that time either of us had the resources readily available to be able to write a check to supply everything for the entire trip. The people presenting the vision would walk away saying, “Boy oh boy, I am so glad God let me be friends with Joe and Lee.” “I surely wouldn’t be here without their help….” They would have repeated that over and over, all around the country. We would have mistakenly gotten the glory, bypassing God’s extraordinary provisions.
The truth of the matter is neither Joe nor I even had enough money coming in at that time to even be able to pre-register for our Black Sheep International Leadership Conference. We, at that time, had enough money coming in to make it financially to the end of the month. Living hand to mouth, month by month, there was never an excess of money anymore. A while back, God began to teach us the value of not just a hundred-dollar bill, but the real value of a five-dollar bill. I know my savings account never increased beyond the ten dollars that sat in it. As it was, Joe and I knew we needed to solicit money from somewhere to pay for the conference registration cost, we needed money for gasoline for our Harley to get there, and we needed motel money between here and there. We began to pray God would open our eyes to his plan, to understand the way He planned to provide a steady source of donations to provide enough money to cover all our expenses, and to keep us funded all the weeks we planned to be on the road. I remember saying that we would look back to this time from somewhere out on the road, saying, “We would be blessed when we realized we were actually where we were and God had provided.” We would see the miracle that provided everything we needed to place us there, and we would praise God in a fresh way at that moment. I laughed in a good way because I knew it was true, I have seen God provide before, this was beyond my vision, at the time, but as Joe said, “Remember who we serve!” We gained a lot of strength through that one saying as we repeated to each other, time and time again throughout the entire trip, “Remember who we serve.”
We only knew what we knew. God did not choose to lay His plan out to us in a way we could connect the dots and just do them. Joe and I began to take baby steps, calling each and every week, first to praise God for some little provision or bit of knowledge…. We could share then how that news from the other fit into a thought the Lord had given him, how it connected a “dot.” The Lord began to build the trip bit by bit. Part of Gods plan was to put us into a place where our faith began to build up, and the point where the first thing we ever did was to turn our focus to God. Praise and provisions, bit by bit the foundation for the trip started coming together. Dave came into the circle by then, he was calling every ten days or so. I was sharing with Dave, he was connecting the “dots” presented to him by God, and then he would share that knowledge with me. Everything started fitting together and there is a peace in our hearts building as we moved out-of-the-way and we began looking at what it was that could first “Kingdom Build,” and then secondly, move our plans forward. “Bit by bit,” “Dot,” by Dot.” “God’s Fingerprint by Fingerprint.” Everything was coming together and connecting. This pattern knitted together month by month, we knew in our hearts the trip was going to happen. We still did not have any money for the trip as yet, but that was just a minor detail. We saw all the other details coming together, by faith, (without stress,) we knew the money would come in. Yea, it was weird, we knew and it was a good feeling.
Between November and March, we seemed to rest when we saw each of the bullet points on our “to-do” list answered in a miraculous way. Still major money had not come in thus far, that was OK, and God is in control. The trip started from the original plan to ship our bikes cross-country to the New York area and Ride back to our Leadership Conference in southern California. We saw the plan to cross the country grow from a 4500-mile ride, to then what we estimated to become at least an 11,000-mile trip riding to all four corners of America.. …No big money yet, but people started saying out loud, when you get ready to go, let me know, I want to help…
The cancer in my lungs no longer showed up on the CT Scans when doctors looked as hard for it as they could. It did not show a flicker in my lungs scan after scan even when they used contrast materials to highlight the cancer cell in the scans. Joe had chemo and then radiation attack it and the surrounding area, then Joe had the dying tumor surgically removed. Joe became cancer free. It is fun to talk to Joe during this period; he was doing his happy dance. Joe was cancer free! Joe was cancer free! Joe was cancer free! The new trial drug I was taking gave researchers and the Pharmaceutical Company good numbers, along with good results from me, others in the drug trial presented good enough numbers consistently enough to encourage the Pharmaceutical Company to have it submitted to the FDA for national approval. My body responded so well to it, I was getting stronger; I was part of the 26% of participants in the drug trial who had an immune system that worked very well with the new drug. I had very few, and only minor auto immune reactions develop from the new drug. My doctors cleared me to hit the road and gave me a list of Cancer Centers my doctors knew they could work with on the East Coast. This is a good backup plan to have in place and it felt reassuring that I could leave for an extended period and forethought is in place to deal with any kind of emergency which may pop up. Everything was in place to begin the trip. Everything is starting to line up in place, everything except for the big money….
Looking back, I am now not surprised we hit a major snag after having so many of the major obstacles blocking our departure removed so we could pick our own departure date after praying about the problems and to have practical solutions answers to our prayers lining up left and right. In March 2010, both Joe and I were going to get what we called our pre-ride CT Scans that both of us naturally accepted would show continued patterns of success fighting the cancer. WRONG! The timing and seriousness of the attack marshaled against our bodies looked and had a feeling of intelligence behind it. The attack really did for all practical purposes. Joe and I understood this and brought into the battle as many thousands of prayer warriors we could gather. Joe’s scan showed the cancer progress from stage three to a stage four, he advanced or realistically declined to a terminal diagnosis fighting a new battlefront in his lungs. My new battle was a new tumor I found one morning in the shower located at the top, inside of my right leg. Our regular scheduled CT Scans confirmed these as new cancer tumors and new therapies immediately came to play. I approved, at my doctors recommendations, to have this new tumor removed because it rubbed on the saddle seam on my motorcycle seat. I will leave it to your imaginations to draw your own mental pictures… After the surgery, the Radiation Oncologist at the Cancer Institute scheduled three weeks of daily radiation and my research oncologist doctors began a new six-week course of chemo using the trial drug. I finished radiation treatments one week before hitting the road, and finished with my last dose of chemo four days before hitting the road. My body was tired… very tired! Tired enough to create national fame for me at my ability to close my eyes and take a nap anytime, anywhere, from coast to coast for the next few months.
Joe faced a different path. His oncologist in Seattle wanted him to check into the hospital and allow them to do a procedure that only yielded a fractional percentage of participants’ success. Something less than ten percent of the patients undergoing this procedure would benefit from it. I asked my doctors in Portland to consider taking over Joe’s treatment. By this time, my doctors and the staff there knew of my dreams, my success with their treatment procedures, and shared with me an optimistic joy anticipating my upcoming trip with Joe. It just felt natural they would be part of an answer to the new prayers everyone started saying for Joe; my doctors in Portland agreed to extend their services to him. Unfortunately, Joe’s insurance company needed to review the treatment plan before they would authorize it. After weeks and weeks of silence from the insurance company we both felt like calling the insurance company and saying, “come-on, this is melanoma cancer folks!!! The fastest spreading, deadliest form of skin cancer folks,!!! FOLKS, are you waiting for Joe to die???” A commitment Joe and I made to each other early on when we agreed there would be no heroism while on the trip, the commitment we would put our cancer treatments first was soon to be put to the test and hit us with no other choice but to alter our plans… To be Continued…
Posted in My Background, My Current Stuff
Tagged Cancer, Friendships, Holy Spirit, Hope, Ministry, Motorcycle, Motorcycle Ministry, Religion
1 Comment
Things Start Coming Together 2010
Posted in My Background, My Current Stuff
Tagged Cancer, Friendships, Holy Spirit, Hope, Ministry, Motorcycle, Motorcycle Ministry, Religion
1 Comment
Things Start Coming Together 2010
Earlier CT and MRI Scans between December 2009 and March 2010 showed a cloud of abnormal cells developing in an upper section of my left lung. The next scan showed the cells accumulating into a more organized group. The final scan the drug company sponsoring the drug trial I was participating in at that time showed the cluster now in a well-organized group. The Cancer had moved into my lungs. This did not catch the doctors at the Cancer Institute off guard; this is an expected failure, they knew my immune system could only work for a limited length of time at the rate it ran before it altogether stopped working with this particular trial drug. This revelation was still a shock to me. I was out of that trial, my spirit sank, and I started feeling pretty beat up.
I spent nearly a dozen months mixing up one of the pharmaceutical companies’ powder concoctions into an injectable solution and injecting myself at home on a strict time schedule. In reality, it is not like there is another option available where I could run to the pharmacy at the corner supermarket, or drive twenty miles and turn to the super drug store to find a cold remedy in search of relief from a particular group of new flu symptoms. As the crazy person thinks he is normal, I did not think my brain suffered compromise from the drug I injected. I did not think the drug led me to where I would exclude facts to be able to come to sound conclusions. I certainly did not think I was in denial. BUT… at that same time, I knew something is missing, I just cannot get my head around the truth of this news and accept what I knew to be true. I really could be dead within a handful of months. Strange, this news of this sudden extreme change in circumstances did not carry a terror-like-shadow with it.
The “bad in the news” ran into the wall of hope and peace. My friends prayed continuously, through their prayers they constructed a spiritual wall to surround and protected me from many of the normal scary things related with dying many of the unsaved faces when they die. To your healthy functioning mind, you are reading and learning as best you can imagine the emotions of the moment you think you might experience facing your own final chapters, all the while hearing from me what I felt when forced to walk through this chapter of my life. My mind was not healthy; it is functioning with an impact from the trial drug. The news is real and it came to me in real-time, sitting in the exam room at the doctor’s office, the doctor sitting, facing me, our knees almost touching. My spinning brain watching him read my body language…. I really knew deep down inside I might be living a fantasy, living in denial and it might be the start of life’s’ end road unless I experienced a real “CT-MRI-Scan-Provable” miracle. Right now seemed like the best time to get my entire life in order. The doctor had a new drug trial in hand to present me to think about which worked with about 26% of the trial patients’ immune systems. Looking around, it is the middle of May 2010; this is the only door leading to a story of my life, which has a few more chapters that are open to me right now, Yea Doc… Where are the new “Release of Liability” consent forms, count me in Doc…
Dave was there for me all summer long. He called every few weeks with hope and encouragements. He prayed simple honest prayers for my comfort and I valued the personal time he set aside to pray with me. Lots and lots of friends called as well. Many came up to Astoria from southern California to spend time with me. Nobody really talked about me dying but the underlying theme was always there. My doctors had other thoughts about what was going on in my lungs. They moved me into a new drug trial. Between May and September 2010, the new drug kicked butt on the cells organizing in my lungs. By the end of September, scans stopped picking up signs of cancer at the new site, and those existing tumors in my abdomen stopped enlarging.
A year earlier, I joined a local group of motorcycle riders who together spent many of their united efforts to help the disadvantaged children in the community. They also worked together with other chapters throughout the State to help sponsor lobbyist to protect motorcycle rider rights. Along with other chapters in the State, they helped persuade State Lawmakers to put into law, a bill that prohibited insurance companies from denying workplace provided medical coverage to people who rode motorcycles. I also witness them put on a “Spaghetti Feed fundraiser which raised nearly $10K among a population of 10,000 residents to purchase a brand new high-end bicycle for every foster child in state custodial living. My heart knew this is going to be a blessing for these children to receive a brand new high quality bicycle for Christmas. This dinner and what they did with the profits blew me away! If this group had a heart like this for the hurting children in the community, I needed to support them. ABATE of Oregon; North Coast Chapter ( http://www.abateoforegon.net/default.html ) is a place for my heart to connect in the community. They created a position of “Chapter Chaplain” and voted me unanimously as their first Chaplain. Only a few months after finding out about the cancer, they stepped up to bless me! I noticed a broken header pipe coming off the cylinders on my Harley. One of the members owns a local Motorcycle Repair Shop; he donated a new header pipe. Two guys came over, said, “Stay upstairs where it is warm.” They installed the new pipe on my bike. I felt helpless, but I was beginning to learn to receive gifts of time and material things from others. .” I just wrote about how a year later the cancer jumped into my lungs. At that time, I was too weak to go down stairs and wash my bike. Shortly my legs became too weak to crouch down and then stand up, too weak to hold the weight of my Road Glide up on uneven surfaces. I parked my motorcycle for five months. In the spring of 2010, to get me back on the road, again, two ABATE members came over one afternoon and told me, “stay upstairs where it is warm” “We will take care of this.” The North Coast ABATE Chapter purchased lowering kits for my front forks and my rear shocks. The guys installed the parts and returned the bike to me; ride worthy again, I was back on the road! Two months later, April 2011, the group put a motion forward to pull money from their “downed Rider Fund and donated it into our trip fund to help us hit the road… ABATE is more important in my life than I can put into words, shortly I left on a 16,000-mile ride to all four corners of America.
Returning to September 2010, a month after Joe approached me about riding home cross-country after shipping our bikes to New York, both Joe and I were beginning to get stronger. We started to pray about the scope of the trip, to modify our overall plan from what we pictured in the original vision born in August. By then, I had $50k in doctor bills stacking up from the package of treatments I received in Portland Oregon. These bills fell into a grouping not covered by the normal insurance I had at the time, or they were building up through unpaid co-pays, or on other test and expensive uninsurable trial procedures. Joe had an equal debt building from his melanoma battle at the Lance Armstrong in Seattle. We wanted to try to put together a fundraiser to try to draw donations to protect our wives from inheriting this debt if we were to lose the cancer battle. The token good faith payments we were making at the time did not even keep pace with the compounding interest costs that was building on the accounts forwarded to collection agency. We also wanted a way we could encourage men to go see their doctors when something about their body started to change. We wanted to break the cycle of waiting too long to seek a medical opinion and end up with a late stage cancer that would steal everything of value from their wife, their children, and their grandchildren through depleting their entire estate.
At that time both Joe and I noticed we are living a life surrounded by Christian men who took their commitments to their faith through a tangible Christian worldview successfully giving us an example how to live our lives day by day. They did not proclaim or demand that the Holy Spirit or God do this or that. They joined with us to seek out what God’s plan was with the things we prayed about and to put that plan into action first. Both of us had an extra dose of peace, the unsurpassed peace spoken about in the Bible. When talking to a church congregation it is easy to use a buzz word here or there to get this idea across. I do not want to do that as I write here. I want to share what we felt, and why I think we felt a strong motivation to plan our trip in the way we did. I need to go back to November 2010 when Dave, Joe and I began earnestly focusing to making the trip happen. To Be Continued…
Posted in My Background, My Current Stuff
Tagged Cancer, Friendships, Holy Spirit, Hope, Ministry, Motorcycle, Motorcycle Ministry, Religion
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Dave Comes Into My Life
Leap frog over nine months of life, I am still fighting cancer. I will jump back to original timeline shortly in a different post. For now, given I have had a few good days, a few bad days. A few good weeks scattered throughout the year, but more bad weeks than good. No good months, but I was still alive! I survived radiation, chemotherapy, everything the FDA has in its’ approval file, barely living at times only getting through with a lot of support from family and the community… For now, different combinations of trial drugs stall the cancer. I still have new tumors developing, and doctors know how intensely tuned in I am to the MRI results of my brain scans. Doctors are so in tune that by now the research center’s doctors enjoy phoning me to ease my stress as I drive back to Astoria after the test are completed to tell me there the results. They tell me time and time again there are no new tumor in my brain, that we are moving forward with… “X,” “Y,” or “Z” trial drugs.
I ended up moving to the north side of the hill here in Astoria. I have two guest rooms and the garage footprint under the house has as many square feet as the house above it. I live across the street from the county jail. Three or four jail cells bordering the sidewalk across the street from my house, all of them not more than fifty feet from my front door. Between the two inch thick, opaque cell windows and my front door in the street was the sound of nearly a half dozen Harley’s backing into parking slots taking a couple of minutes to perfectly align their bikes in a row with their rear wheel or exhaust pipe extension below their saddle bags just barely touching the curb. The rumble had a potato, potato, potato thump from the combined exhaust pipes of all the Harleys building a harmonic vibrating throughout the entire concrete structure of the jail. The guys were taking their sweet time backing up to the curb, I can see where all this noise from the road outside could tend to rile up the prisoners.
I live in a quiet neighborhood. My guests arrived out here on the North Coast of Oregon after riding several hours, riding through the rain up coastal Highway US101. They spent hours listened to their own thundering exhaust; some listened to extremely loud music through iPod ear buds, and of course, the wind. Their hearing, dulled to all but loud noises by the time they got to my house sounded like they permanently had earplugs inserted into their ears. As soon as they turned off their motors, not even waiting to take their helmets off, they started talking to each other. They were speaking using their “outside voices,” very loud, almost shouting by normal standards, and, they all had something to say, all at the same time to each other about something that happened on the ride out of town and up the coast.
Everybody finally settled down after introductions of a couple of new faces. And again as with other groups coming into town to visit, I attempted to try to contain the noise level they made outside. This time I mentioned I only had one bathroom, first come, first serve. I witnessed poetry in motion as half a dozen bikers and their ladies walked, talked, and peeled off layers of rain gear, jackets, sweaters, riding pants, chaps, long johns… all hoping to be first to present themselves ready to claim their position in line to the single bathroom.
This group rode north to Astoria from Brookings Oregon, which is a few miles north of the California – Oregon border on the coast. They have a purpose to head north this weekend, to escort and support a fellow member named Dave to the memorial service of a close friend of his. His friend was rolling slowly in the middle of a U-turn in a parking lot when his front wheel tucked to the inside of the turn tossing Dave’s friend over the motorcycle landing on the top of his head. Even though he was wearing a DOT approved helmet, he suffered a very rare brain injury similar to the brain stem injury Dale Earnhart suffered. Dave’s friend died instantly when he struck the ground.
This circumstance gets to the core of the dangerous lack of a sense of urgency many of us have become so very comfortable living with. So many of our friends have intellectualized our path to a religious existence in the country where we have such a broad choice of faith based belief systems to fill the God shaped hole in our hearts. When Dave’s’ friend woke up and prepared for his ride with friends later that morning, he more than likely focused on where he was going to fill his gas tank before meeting up with his friends, what he was going to eat for breakfast, lunch, or where he and his wife were going to have dinner later that night. I am quite certain his last thought was not what words would come out of his mouth when without warning; he found this God thing is for real. As Christians, we carry a New Testament, part of our modern Christian Bible, where Jesus himself said He was the only path to an eternity shared with the Creator and the blessings of all that is good.
Fighting a terminal cancer brings me to a place where I try to ask God to help me be the man He wants me to be shortly after I wake up and realize I am still alive. I try to begin my day with a prayer. People in my world tolerate “My sense of urgency.” People accept the fact I should have an extreme sense of urgency. Many think it would only be natural for one who is so close to dying to lean towards spiritual thoughts. In another place in the Christian Bible, it says, “no man knows the day or hour…” I have a large core of friends who believe, think, and pray in much the same way I do. Some are fighting cancer; some are not. Some have been motivated by the same gut feeling which may have been whispered in their ear by the same spirit who whispered in my ear to stop seeking, to just be comfortable. They are tired of being comfortable.
I met another Black Sheep names Steve in 2007 at a North West Regional Rally and spent quite a bit of time sharing together and through this friendship he thought another friend of his and I had quite a bit in common. Steve thought Dave and I would become good friends and Steve told me for a year or more that Dave and I should really try to get together. When Dave’s friend died, an opportunity came up for the group of them to break up the ride to the Vancouver Washington area for the memorial service by staying overnight in Astoria at my house.
I have two guest rooms in my house. Riding up from Brookings was one married couple; they are the chapter President and his wife, two single men, and a future fiancé of one of the single men. The married couple got the front guest room, the single lady naturally slid seamlessly into the center guest room without complaining, Steve won the coin toss, (he thought) and slept on the sofa, and Dave got the inflatable queen mattress. Dave said he slept comfortable. Through our discussions during the evening and night, I came to understand Dave was no longer comfortable with the overall Christian opportunities he felt were open to him through the traditional efforts he was aware of in his community. Dave heard about the plans Joe and I were praying about to cross the country on our motorcycles and a tiny bell started ringing in his brain.
In the morning, we woke up to a cold, constant rain. Dave and the group bundled up, some had not been prepared for the north coast rain the group rode into here when they arrived, so as they departed, I loaned my Wal-Mart rain gear to them to share, and they continued on their way to Portland to support their friend’s widow and other events that lay ahead that weekend. Dave and I began to call and chat from time to time and the Lord started to move His plans into action. One day, Dave called me and asked if he could shadow us for part of the trip. Dave had his own reasons to ride with us, which he shared with me, but it was after everything for the ride was in place that we found out how valuable Dave riding with us would turn out be.
During one phone call, Dave ask if we planned to ride through Arizona. I told him I was leaving the route open to the Lords leading hoping to understand God’s plan before it was time to head for the east coast from our Leadership Summit in Southern California. I figured if we headed east, why not make a stop in Arizona so Dave could have his new motor dino-tuned by the engine builder who put together the build package he followed for his Harley motor. A few weeks later Dave asked if we planned to head through Missouri or Arkansas as we traveled east. I was no closer to having anything from the Lord, which could lead me to say no, so I said that if he saw anything in route to speak up and we would try to work a place he desired to stop into our route.
Dave began to get excited about the trip. His phone calls and the bug he was nurturing for the trip coincided with the sudden increase in both Joe and my health. However, five month earlier, in May 2010, the cancer metastasized from my lower abdomen up into my lungs. (Continued in “Things Start Coming Together”)
Posted in My Background
Tagged Cancer, Friendships, Holy Spirit, Hope, Ministry, Motorcycle, Motorcycle Ministry, Religion
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“Right Then, Right There”
Posted in My Background, My Current Stuff
Tagged Cancer, Friendships, Holy Spirit, Hope, Ministry, Motorcycle, Motorcycle Ministry, Religion
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“Right Then, Right There”
I thought to myself, “I get to meet Joe in person for the first time.” This was Joe’s first ride with the Portland area Black Sheep shortly after the 2009 Black Sheep Leadership Summit in Southern California where he first heard from the podium about my cancer battle. He rode out with them and some other Christian Bikers who were showing interest in applying for membership in our Ministry. For a couple of them, this was their first trip together with the Portland area Black Sheep in a group ride out to the coast where I live in Astoria, specifically so I could meet them and so the other Chapter members could evaluate their riding skills. I was the Chapter President at the time. This ride became a “Chapter Run.” Once they arrived, they fell into the common pattern of making more noise than they really needed to but I will write more about this phenomenon later. Once my friends dismounted off their Harley’s and everyone stowed helmets and riding gear securely on their bikes, I noticed from my enclosed second story porch that neighbors were starting to come outside and check out the sudden transformation of their quiet neighborhood. This intrusion into the tranquility of the block is their first encounter with the new renter who moved into the neighborhood less than a month earlier. Adjoining neighbors, house by house and across the street from each other were sharing the international unspoken body language for “what the heck is this ruckus” by making eye contact then turning palms up and raising their forearms as they would cock their heads either to the left or right…. I went outside to hurry the “getting settled off the bike” process hastily along in an attempt to bring the noise generated by the arriving crowd inside my house, close the door and insulate it away from the quiet of the neighborhood. I realized this was not the best, how do you do; I am your new neighbor…
After successfully herding the crowd into my house and meeting the new guest, the rooms filled with a light feeling of gladness, some of us were meeting for the first time, others meeting again to share a common joyful feelings like a family gathering over a food filled festive holiday. It felt great to be together with friends and fellow Black Sheep. We had official business to attend to which included asking older Chapter members to reach deep within and receive appointments for new responsibilities within the leadership of our Chapter until regular elections would be held in a few months.. I needed to step down as Chapter President as I reëxamine where I placed my resources, energy, and as it were my “life force” while I sorted out the cancer battles which lay ahead for me. Many of the Sheep, which rode out to my house that day, did not have any idea I was calling on them to shoulder a heavy responsibility like taking on the responsibility of a Chapter Officer. Everybody called on, some after a short uncomfortable pause to think through what I was asking of them and that they could do the task asked after fully counting the cost. All of them accepted the new responsibilities asked of them. I felt like the weight of layers and layers of heavy responsibility suddenly moved from my shoulders. Immediately I had a fresh breath of air letting me concentrate of sorting out other life affecting decisions concerning the cancer battle.
Some of the Sheep gathered in my living room had been at the Leadership Summit in Southern California where at the same exact time I lay in a hospital bed in Portland Oregon, still in shock from the cancer diagnosis I just received. Not many of us have a plan within easy reach in our quick response to life and death emergency news “grab bag.” Somehow with my wife’s help in spite of the overwhelming future changes this news brought my wife, with her help and deliberate and considerate patients, I made it through that first overwhelming phone call to her from my hospital bed. Then, after gathering myself back together again a short moment later, I placed the next phone call I made to a dear friend in Riverside California to ask him to have the original Black Sheep Chapter I “Patched in” with pray for me. I did not know it at that moment, but my friend was at the yearly Black Sheep Summit. He immediately sought and was granted permission to address the hundreds of Black Sheep Chapter Presidents, Vice-Presidents, Chaplains, Secretaries, Treasures, Regional Directors, and National Board Officers gathered together from all over the country. He shared who I was, through his own brokenness shared our heartstrings and asked our National Chaplain “Right Then, Right There,” to bring together a corporate prayer to God, asking Him to address all the traumatic brokenness I was experiencing. Someday I hope to put in words what it meant to me, to be me as these prayers elevated to the Lord. However, right now, some of those who were 1200 miles away at that moment attending the Summit in California had a heart love and concern wanting to become involved in my life in a real way, “Right Then, Right There.” God heard their prayers and petitions again…. I believe countless Angles departed the heavenly realm and put into action a reserved plan for the next assault of the Lords’ against the Principalities and Powers ruling over this fallen world. The Angles started bringing a work, a work ordained by the Lord, intended to bring hearts closer to Gods’ own. Through all this craziness and seamlessly at the same time, The Lord was answering a call first uttered from my lips years before to “Use me Lord, Here I am.”
The group gathered in my living room made it through the heaviness of the Black Sheep business OK and the common, a more normal state of laughter filled the room again. Soon the air of celebrations morphed to a more seriousness tone. The room became quieter and quieter. Seriousness had passed from the joy, new hope and expatiations’ born with fresh ideas and the new leadership. Swiftly the new excitement of the moment shifted to a quiet and a need to know something. The energy and noise of busy chatter plummeted to a long silence as eyes turned to me and a hush fell over the room as everyone paused for me to answer the three “elephant question” filling the room. “Lee, – I can’t imagine how you really feel?” “How are you really doing?” “What are you really going to do?” I saw the love radiating from their eyes, kind smiles agreeing with my spirit knowing it was going to be a hard moment.
I felt the presence of the same Holy Spirit that recently fell over the auditorium in California begin to flow over me, I felt like God was wrapping me in a preheated electric blanket, wrapping me in His love as I searched for the right words. The Holy Spirit filled the room as each person heard in real time my words leave my lips and the words supernaturally fall apart in route to their ears. Letters dissembled from my spoken words and reassembled to form new words and a message perfect to answer what each person need to hear to inspire them and motivate them to fulfill the work God had in store through their relationships with me. I shared my heart and feelings with brutal emotion and honestly. At times as tears would rise up and flush my eyes, I found a new strength to share more, deeper emotions, unanswered fears, and a hope and Peace I found in real time while combatting the emptiness I felt. I was among people who opened their heart to me as natural blood family member would….
These were the new Black Sheep God had assembled over the last few months to minister to the community and now to me here in North Oregon. They joined together that day and committed to do the Lords work, seeking out opportunities to be a brother or sister to me. Soon I ran out of words. Soon, out Regional director gathered everyone together to circled around me and Joe stepped forward, anointed me with oil, and led a prayer for the Lord to keep me close to his heart and fill every request people prayed for me. He prayed that if the Lords plan was to heal me that he would be swift about it, moving immediately for a complete and total healing. They each took turns praying short, direct prayers filling me with patience and strength to pursue the entire course of medical treatments that lay ahead…. They prayed a wonderful prayer, I remember I wished I would soon learn how to pray like this, that someday I would have an opportunity to pay forward the comforts I received “Right Then, Right There.” Joe prayed a mighty prayer for me that day which I knew moved Gods’ Heart. I was a lucky man to draw a mighty man of God like Joe into my life to go to battle interceding for me to the one appointed to intercede, to intercede for us…. It was not just Joe who was a mighty man or women of God praying mighty prayers for me that day… The room was full of them. Again, the intensity of the emotion of the love shared by the Black Sheep brought tears to my eyes.
Nobody in the room had any idea at that time that somewhere around six to nine months later, that the few abnormal cells scattered in an unorganized, yet to cluster grouping of melanoma cells in Joe’s side and back would organize. They would soon tap into a blood supply of their own, gathering together to make their presence known by forming a tumor. Their discovery was almost too late. The cancer, by the time of its discovery in Joe, had already become a stage three melanoma. Joe and I now found the reason God touched his heart drawing us together so we could double-team the cancer. We joined forces as a team battling the cancer as if it were a spiritual entity barging into our lives. This became a new mantra for both Joe and me over the next two years. To go to battle in prayer, to pray for whatever, for whomever, “Right Then, Right There!”
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Tagged Cancer, Friendships, Holy Spirit, Hope, Ministry, Motorcycle, Motorcycle Ministry, Religion
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