Words From A Cancer Soul, COLA
edited: Sunday, September 11, 2005
By Addie Williams & Katie Fairchild
Rated "PG" by the Author.
Posted: Sunday, September 11, 2005
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I hesitated on putting this on, but feel that he would appreciate it, as he has his own site up and expresses so much concerning his life and Adventures.
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- 11:06 AM
Ward’s CELEBRATION OF LIFE ADVENTURE (COLA)
Prologue: When I finished this first section of my journal to send to Dave Winters to post to my website, it had a lot of pictures. The problem is, pictures take up more memory than I am allotted… I can only send 2MB at a time over my website. I tried to break it down into sections to include all the pictures but some sections were still too large. So, I’m sending the text alone and am not sure yet how I will get the pictures inserted later – but at least the story is available.
Cancer does really weird things to a person – not only to the body but to the mind as well. When one is suddenly placed in a limited life position, many seemingly important things are no longer important and a “Living Like You’re Dying” mentality takes over. I have very seldom mentioned my prognosis to my friends or family because it is so very difficult to accept and honestly, I don’t buy it. My doctors will not give me a time based prognosis because they say everyone is different and reacts differently to the various treatments given. Therefore, I did the research myself to get an idea of just how serious my 4th stage colon cancer is. My sources were the small physicians information sheets that come with documents defining and explaining specific chemotherapy drugs. Each sheet, of the included 3 sheets from each type of drug, stated that patients with liver cancer undergoing chemo therapy can expect a 20% chance of survivability after one year and a 1% chance after two years (with chemo). Now, this was quite a shock to me – I actually got out a magnifying glass to confirm what I had read because the sheets are written in about a 3-point font. The text was scientifically written and included a life expectancy vs. therapy chart and left little doubt that I had read it correctly. So, after the initial shock, I decided I belonged in the 1% category – but JUST IN CASE – I wanted to do something very adventurous while healthy enough to do so. The problem is that life with my type of cancer and treatment must be lived in three-week cycles – and the first week I don’t consider quality living at all – because it’s “chemo-week”. I spend 5 or 6 days meeting with doctors and then getting “juiced up” with 4 different types of drugs so have to be tied to a machine for four to six hours every day. It’s a great time to read, write or reflect but sometimes, due to the fatigue brought on by the drugs, I simply don’t feel like using my brain so I don’t get a lot of writing done. Sometimes, on the first day, I may answer some emails or write a little since no harsh drugs are given on that day – only vitamins and other drugs to get me prepared for the onslaught of the next four days. Days two through four are the worst since I receive oxaliplatin, which causes extreme fatigue, nausea and skin and mucous linings irritation (esp. in the mouth & nose). In addition, it makes me very sensitive to anything cold. I can’t have cold drinks, I can’t touch anything cold or even breath cold air. I hate this since my favorite beverage is ice-tea and once I’m finally off this drug, it takes about a week before I can drink anything cold again and even longer before I can pick up the ice to put in my tea. OK, when day 5 of chemo-week finally arrives, I feel pretty good because, in addition to no more “oxa”, I am also leaving the hospital. YEAH Baby, YEAH!
Week two is what I call my recovery week. My face may break out – though usually not a bad as the picture. However, my tongue does breakout every time and if you can imagine that skin breakout picture pertaining to the mouth, that’s what I have to deal with after chemo. I can’t eat anything hot, or spicy – I can’t even use toothpaste to brush my teeth. My mouth dries out very easily and it’s really a pain sometimes to keep it perpetually lubricated to ensure it doesn’t get too dry, which could result in gum disease. Fatigue during week two comes around mid-day and though I’m “semi-functional”, I would much rather be napping part of the time.
Week three is the best! It’s almost to the day – two weeks after the last of my chemo – that I can drink cold liquids again and I am active all day - I can write or walk or just about anything except heavy exercise. However, my appetite is never good but at least during my normal week, I can eat two full meals instead of just breakfast and a few snacks as I do in weeks one and two.
Now you know a bit about my three-week cycle, I am going to tell you about my idea of what I am doing to live like I am dying. Years ago, when I was in good physical condition, I wanted to ride across the U.S. on a bicycle. I still have that dream but am obviously in no condition for it right now. However, I did plan a road adventure during one of my chemo weeks – it also would be on two wheels but for this trip I will have a powerful 1.8 liter engine between the wheels. The idea began because I wanted to ride a motorcycle to one of my chemo treatments, and it grew from there. My imagination took off and since I have family and friends in many parts of the Eastern US and Canada, I decided I should visit them by motorcycle while I still could. During this ride, I would celebrate the life I now have and enjoy it to the utmost – stopping where I wanted and taking time to appreciate the natural beauty this country offers while spending time with many friends that I have not seen for some time. I appropriately name the escapade as my Celebration of Life Adventure (aka COLA) and made some cards up to give people asking them to celebrate their lives with family and friends NOW and often - and not wait to do it. I also included my website so they could read this journal or email me if they wished.
And before beginning this journal of my COLA, I must add this about so many good friends at Special Operations Command (SOCOM) in Tampa. Since being diagnosed, I have had to use all my sick and personal leave. Had it not been for many fabulous friends that generously donated real time leave to me, I would not have been able to do this. The personal leave they donated is the very same as giving me money from their paychecks because personal leave is paid leave. I certainly could not have gone back to work full time and without their charity, I would be in a difficult hardship by working part-time or not working at all with no means of support. For this I want to give my heartfelt appreciation – when I first heard of all the people that donated, it confirmed my highest realization that some of the best folks in the world are my comrades at SOCOM. I had never realized I had so many true friends and hearing the news of the donations, my eyes welled from gratitude. Thank you all.
The American Heritage Dictionary defines adventure as: 1. An undertaking of a hazardous nature; a risky enterprise. 2. An unusual experience or course of events marked by excitement and suspense. Given this definition, I suppose cancer, in itself, is an adventure and I won’t suggest it’s not. However, it is not voluntary and certainly not something that someone prepares for or looks forward to. Already having cancer, I decided I wanted an adventure of a different sort – I love traveling, especially by motorcycle, and visiting friends and family. Earlier in the year I had sold my totally awesome Honda Valkyrie and thought my riding days were pretty much over after being diagnosed. But the more I thought about it – the more I realized that motorcycle riding is therapy for me – and there are few things that can make you feel as free as riding the open highway on a brawny motorcycle – enjoying the scenery and nature that cannot be as appreciated from inside a cage (car). So, I’ve spent two weeks preparing for a trip that is taking me from St Petersburg, FL, up the Mississippi Natchez Trace, through the Appalachians and then as far north as Quebec, Canada (after Chemo in Illinois). My return route then takes me back through Portland, Maine down to Boston, New York City, Washington DC and other numerous stops before returning to Florida. This journal will record my daily “adventures” and I am more than happy to share them – hopefully, you will not find them too boring. And even though there will be many boring hours just riding to predetermined destinations, I will not put those moments into words.
Of course, before I could even begin the trip I had to buy a motorcycle. Believe it or not, while planning the trip I had a dream about a bike with a unique back rest and the following day I went to Barney’s in St Pete and noticed a PURPLE Honda Goldwing with a unique back rest (so much for a “Brawny” looking bike). I knew I was supposed to buy that bike and gave the salesman a ridiculously low offer for it. He called me back the next day and said I could have it for the price plus $500. I agreed and picked it up the following day. I guess purple bikes don’t sell too well. I get a lot of grief from the macho guys – but guess what, women love it – especially my girlfriend, so I’m not complaining.
I didn’t start my trip until August 17, 2005 even though I had planned to start a week earlier. Several things got in the way and I wasn’t sure if some of them could actually be resolved in time to leave in August so it seemed as if the trip might be “strangled” from the beginning. Had that happened, this would be a short story - titled perhaps, “Choke-a-COLA” and it wouldn’t have been very fun to read.
Wed August 17th – Due to my “condition”, I tried to plan each ride to be four hours or less. In addition to what I said previously about oxaliplatin, it also makes me very sensitive to the sun so I didn’t want to spend too much time riding in the south in mid-August. Originally, I had planned to leave St. Pete at 7AM and drive as far as Tallahassee before stopping for the night. However, I called a friend that used to work at SOCOM, Linda Kindurys, and told her I wanted to stop by and visit. In our conversation, the idea came up for me to spend the night at her house in Fort Walton Beach, and leave from there for my next stop in Mississippi. At the time, it sounded grand – the more time I spend with people and the less money I spend on hotel rooms, the better I like it. So, Tuesday night before leaving, my girlfriend and I have a bon-voyage dinner with some friends and got home a bit late for me to finish some last minute packing and prep. I set my watch to wake up early but was overly tired and slept through it. I didn’t start on the final arrangements until 7:30 – a half hour later than I was supposed to leave. I finished around 10 and the heat was already in the 90’s. I decided to change my route and go up a slow route to pick up some things from my storage unit on Allen Bussey’s property in Hudson, FL. The ride there was slow but bearable – after all, this is my very first leg of a trip that is going to take me over 6,000 miles over the next month and a half, and I was pretty excited. I got the items I needed but realized I wasn’t feeling too well and stopped at a Granny’s restaurant, to cool off with some AC, some good food, and a nice ice-cold tea. Well 2 out of 3 ain’t bad - I couldn’t drink iced ice tea due to the “oxa” – so I just had the waitress put a few cubes in it to remove the heat. (The trip began during a “recovery” week). I spent about 30 minutes there and finally felt able to move on – and when I got outside the temperature was 970 F. There have been two higher truths I have realized since beginning this trip – higher than normal temperatures and extremely high gasoline prices. However, neither makes me feel I have learned something worthwhile. As I mentioned, I will not bore you with tales trying to make a boring ride seem exciting – I simply followed Highway 19 to Highway 98 and tried identify with roasted chickens making a supreme sacrifice. It wasn’t difficult to do. The only interesting sights on this trip began around Apalachicola, Fl. that still shows damage by hurricanes from both last year and this year. I witnessed this devastation from this point through Mobile, AL. It is remarkable how many people have not removed the protective siding from their windows – I have to assume they are simply waiting for the next hurricane this season. But moving on, just before reaching Destin, FL – I passed the “Men of the Sea” museum and noticed they had the final Advanced SEAL Delivery Vehicle (ASDS) on display. It’s amazing how much it has changed after the latest Congressional budget cuts and down-scoping – I was astounded!!! (see picture)
I finally arrived at Linda’s house just after dark – having been on the road for over 9 hours. I was SPENT! Linda, Vic (her husband) and I talked a while but I had to turn in early – I just couldn’t keep my eyes open. I took a hot shower and it felt like heaven – I then collapsed on the bed and didn’t wake up until after 7 on Thursday morning (it is very rare for me to sleep all night).
In the morning, Linda showed me what she does for enjoyment (& profit). Her passion is working with glass –she is an excellent craftsman. She made some extraordinary pieces of stained glass (see pics) and is now getting into fused glass. Her work is amazing – I never knew she is so talented. Oh, and I have to mention her home – it is a beautiful place on the bay in Pensacola and is situated in the middle of some wetlands. One of last year’s hurricanes blew in a national park sign that she put on her back deck - it makes a perfect placard for her back yard, which does indeed look like a national park.
Thursday, August 18. I left Linda’s house pretty early to avoid driving in the sun as much as I could. My first stop was in Pensacola to try and contact some old friends I had known there sometime ago. I knew one, Sharon, had moved but had no idea where. I haven’t seen or heard from her for quite some time. My other friend, that still lives there, is Cynthia Craig. She was one of my very first girlfriends from college that I met over 30 years ago. We have stayed in touch over the years but I seldom see her except when I might be passing through the area. To contact Sharon, I bought some stationary and wrote a quick letter at a very neat coffee bar in the downtown tourist district of Pensacola. The city of Pensacola has done some great things with their downtown area – it has a New Orleans flavor and many nice shops and bars. Once I finished the letter, I took it to the bank where she used to work and asked someone there for her forwarding address. Unfortunately, it was lunchtime and the only person that had the address was out, so I just left it for them to send and hopefully it will reach her. I should know in a few days if she got it.
From there, I went to try to find Cynthia’s business office. She converted a beautiful house to an office near downtown but I couldn’t remember exactly where it is. And I NEVER did find it. I called her home but she, too, has moved (but is still in P’cola) and the number is no longer in service. I had no choice but to get back on the road because the temperature was climbing and I still had a couple of hours of driving to do. To leave town, I did have to pass where Cynthia used to live, so just by chance she might be at the old house, I drove by it. When I got there, I went into total shock. The house was in ruins! It sits a few hundred yards back from the bay and Hurricane Ivan almost completely destroyed it last year. The water line was still visible – about 3 or 4 feet up the walls, and everything in the house was gone including most of the tiled floors. Now this was a large, magnificent home – beautifully designed and recently built on the bay. I had visited her a couple of years ago just after she had moved in, and she was so proud of it – with good reason. I felt so bad for her after I saw it and, naturally, very much wanted to talk to her and see how she is doing. I talked to her neighbor and gave her my number for Cynthia to call. Later that evening, while staying at my next stop, she did. She is fine now but last year was totally devastating for her – as I learned when I asked about her husband, Joe. Joe had been staying at another home they owned and simply refused to leave as Ivan approached. Cynthia begged him to come with her but he flatly refused to leave. He died. Cynthia, of course, still has a hard time talking about it but she is getting through it and my heart goes out to her. It is hard to loose someone in any circumstance but it is especially tragic when it could have been prevented.
I left Pensacola in the early afternoon and was feeling a bit ill – probably due to the heat, which was already near 1000F. In Foley, AL I cruised around a block a couple of times just as I used to do on my tricycle 45 years ago. OK, OK, it was a bicycle but the point is that I used to live in Foley. An old tree in front of our old house still has arrow holes in it where my brother and I used it for target practice. Of course, those wounds are about 25 feet high now when they used to be about 3 free from the ground. I was so disappointed to see my old hand built fort was no longer there but hey, I was about 8 years old when my brother and I built it from used lumber – but it was really cool. It even had a second floor but you had to lay down to get in it. Yeah, there are a lot of old memories from that place – it’s where I hung my sister (my dad pulled her off the rope before there was too much brain damage), and where my brother shot me with an arrow (thankfully the arrow bounced off my sternum but it hurt like hell). Oh, and my pet rabbit was killed by a dog and left only the head for us to find. I threw it back in the cage – everyone assumed it was because I felt so badly to loose my pet and as a little boy, I felt it might live again. Actually though, I put it in there because I had to go somewhere and was in too much of a hurry to bury it. (Thought it would live?! Yeah, right!) Oh, the memories! ‘ tons more but not now. Having said that, there is one thing that upsets me about this trip thus far - I didn’t take some pictures I should have such as the devastation of last year’s storms on the panhandle, Cynthia’s house, my old house and the tree and some other really good shots. I did improve on the picture taking after Foley but I really wish I had taken more early on.
My next stop was Moss Point, Mississippi (near Pascagoula). By the time I got there I was extremely exhausted and feeling pretty ill due to the heat, I’m sure. I don’t believe I was dehydrated since I had been drinking water and tea the whole time but two days of driving in the Florida August sun can’t be good for you – especially if you’re already “afflicted”. As mentioned, I made a rule when I left not to drive much more than four hours a day but AFTER finding Moss Point, it took me FOREVER to find Steve Stringfellow’s house. Steve is a very close friend that was the principal of a high school where I used to teach (Live Oak). He and his closest friend Chick, had to talk me in once I got to Moss Point, and believe me, it wasn’t easy. Moss Point has changed so much in the last 25 years and I couldn’t find any of the old landmarks. I had a GPS and for the life of me, I don’t know why I simply didn’t plug in his address coordinates before leaving but I won’t make that mistake again. At any rate, I finally made it and it was so good to see “String” and our old friend, Chick. Greetings were made and little “catch up” done and it wasn’t long before it felt as if I had never left. All of us were soon insulting each other and laughing at the same ole things we always had. And Steve was the most gracious host – he doesn’t cook and every time we went out, he would not let me pay for anything – no matter how much I insisted. So for the first time I actually felt good about feeling bad. HUH?! Well, since I couldn’t eat well, I didn’t order too much and my meals cost less – or I could take leftovers back with me – which was better for String.
Friday, 18. August. The following morning, Bob Henly, the other math teacher from the old school, came over to visit me. All four of us sat around and reminisced over old times – good and bad. Bob, now superintendent of all math programs in the Pascagoula High Schools district (and a preacher too!) has not changed a bit – except for putting on a few pounds. However, his sense of humor and dedication to God and his students is as steadfast as it’s always been. After a couple of hours, he had to leave and Steve, Chic and I went to Ocean Springs to eat at one of their favorite spots. It’s called “Rene’s” and is a small, quaint meat market that specializes in Creole cuisine. Many famous people from sports personalities to movie stars have pictures posted on the walls in there. You would not think a small place like this would be so well known. One the most popular current day diva’s has a picture there where she is eating a sandwich about the size of her head – that being no other than Paris Hilton. We ordered gumbo and it was delicious. I would have enjoyed it more had my mouth been less sensitive due to my treatments. (I did have to let it cool down). While there, we talked about what has happened to many of our students during past years. Physicians, wealth, deaths (car accidents), a heart attack (Gary Busby in his 40’s), and “alternative” life styles all entered the conversation. All in all though, it was mostly good and we all had fun.
Saturday, 20 August. I left Steve’s house pretty early for Biloxi to pick up my nephew, Adrian. (His picture didn’t come out very good... sorry!) He wanted to ride the Natchez Trace with me from Jackson, MS to Huntsville, AL. I was excited about this since travel is much more rewarding when shared with someone. However, it was the hottest day I’d encountered thus far – temps were above 100oF for most of the trip. And since I had to pick him up in Biloxi, instead of Jackson, it added several hours to the trip. My four hour driving limit had been exceeded more than the speed limit on this trip. It wouldn’t have been so bad but the “oxa” also makes me very sensitive to sun and as a result, my face began to breakout with pimples again. Also, like everyone else, the heat saps my energy and by the time we got to our first break, I practically dismounted the bike by falling off and my patience was wearing quite thin. I was very anxious to get inside so I grabbed Adrian’s shirt with all my strength to jerk him off the bike and get him inside – but he just thought I was straightening his collar and said “Thanks!” then took at least another 5 whole seconds to get off while I stood there bent over and panting like I had just finished the Hawaiian Iron Man triathlon.
This cool off stop, in Jackson, was a small 50’s style restaurant that had a flair that both of us liked. When we opened the door, we expected to be welcomed by a blast of cold air but instead were poorly received by a lukewarm breeze. We learned from the manager that only one of their two a/c units was working. We almost left but I thought we may not want to cool down too fast (stupid me) but more than that – the restaurant was so novel. It had pictures of Elvis, Marilyn and Humphrey over every table. Fifty’s souvenirs and pictures of my favorite old cars lined all the walls. So, we stayed and had a great lunch. I, of course, didn’t eat much – just a couple of vegetables, and Adrian had a truly southern meal of chicken fried steak, mashed potatoes, lima beans and corn bread. It was great – but I had not begun to cool off like I had wanted. I had taken my laptop in to check our route and by the time we got it and ourselves back on the bike, I was already, again, in a marathoners sweat. It was so frustrating – the bungee cord’s would not bungee – it felt like stretching steel cable and the suitcase would not cooperate when trying to attach it to the luggage rack. I ended up scratching my bike and punching out my nephew (just kidding) but I was aggravated – and it primarily due to the heat. I checked a bank marquee behind us (see pic) and it was only 101 but it felt hotter. We finally got everything mounted and started again. I wanted to stop again to cool off properly before the getting on the Natchez Trace, which I thought was only about 20 minutes away. We got alternative directions from a local lady for the quickest route and it turned out to be over an hour - and by then, the temperature had gone up to 103. I mean, that’s too much for even HEALTHY people. For God’s sake, I do want to at least live out my first year! We got to the Trace and I woke Adrian up since he had passed out from the heat, and with my last ounce of energy, pulled him off the bike. I told him to wash his face and try to cool down because we were going to hunt down and kill the lady that gave us those directions. He was pretty despondent and kept mumbling something about “wa-wa” so I let it go.
Anyway – as miserable as it was to get to the Trace, we were glad we did. It is a beautiful section of highway that runs from Natchez, MS to Nashville, TN. It is parallel to the original Natchez Trace that was developed in the early 1800’s. During that time mail delivery was very slow getting from the upper states to the lower since there were no railroads or waterways. The only method of communications was using old Indian trails that were difficult to follow, dangerous and many often led to dead ends. President Jefferson requested locals in the area to develop a means of connecting the known trails into one long, continuous trail that would allow easy access for mail carriers and other types of commerce. It was finished around 1833(?) but not without a lot of assistance from the Indians. It became a very well used passage by Indians and Whites alike and supply stations were set up along the way to make travel more accommodating. The trail even had agents that would go back and forth along their specific routes to clean up, maintain contact with Indians and assist travelers. In addition, through use of the trail, missionaries spread Christianity to many Indian tribes and built numerous schools. Many of the Indian children were taught trades – the boys learned farming and woodworking and the girls learned basket weaving and cooking. After the Mississippi waterway was developed, the trail was pretty much abandoned. However, much of it is still intact and it makes a wonderful trip to drive beside it and read all of the associated history written on roadside markers.
We finally made it to Tupelo and my GPS guided me straight to the front door of the Trace Inn to the amazement of my nephew. I didn’t tell him we were supposed to go to the Economy Inn on the other side of town but it was all good (just kidding). Now even though the Natchez was shaded in many parts, it was still hot – triple digits almost the whole way. By the time we got to the hotel, I was feeling pretty peaked. We unpacked and then walked over to a steak house for dinner. Adrian ordered a steak and I, as usual, ordered vegetables. I so wish I could eat the heavy stuff sometimes – anyway, I ate about three bites and put the rest in a to-go box. Of course, I didn’t touch it anymore that night or in the morning and I have no idea why I even took it back. Just the thought of having the restaurant throw away $7.00 worth of MY food, I guess. (And it was only veggies!). We showered (no, not together!!!) and went to bed. I slept like a rock – my body was purely beat!
Sunday, August 21st - The following morning, we wanted to leave as early as possible because we had a much deeper respect for the sun-god – and I’m not even Aztec. However, I slept until 8:30AM and we still needed to make a couple of stops for cash, gas and breakfast before getting on the road. Indeed, it appeared as if we were headed for another wretched day in the heat. At least when we packed up the bike this time, we were smart enough to move it to a place near the front of the hotel that was shaded – until the big guy standing next to us began to leave. I tried to pay him a couple of bucks not to move for a couple of more minutes – he thought me strange and left anyway. After packing up, we stopped at Hardee’s for breakfast and I could actually eat….and though biscuits and gravy are not on my diet – I completely enjoyed them and added a couple of eggs for good measure. We got back on the Trace and a crossed bridge that passed over one of the canals on the Tennessee-Tombigbee waterway. While we were there, a boat pushing four barges was coming toward us headed for the lock just past the bridge. We hurried down to the side of the canal to get a closer look at were amazed at the size of the barges being pushed by the small tug – not to mention there were four of them. These two pictures are from the barges mentioned and the lock. The next picture is off one of the placards I’m standing next to that gives a brief history of the Tenn-Tom waterway. We got back on the bike and headed on to Huntsville. I was actually quite relieved to get on a real highway again and not be restricted to the 50MPH limit of the Trace. Going 90MPH feels GREAT!! We stopped one last time for gas and a cold drink and after getting back on the road for a few minutes, we FINALLY saw a well-known Huntsville landmark – it was the NASA Space Museum displaying a multitude of large Apollo rockets and other spacecraft. We didn’t stop but took a couple of pictures as we zoomed by.
I think it was bout 4:30PM when we finally rolled into my sister’s house on Monte Sano in Huntsville, AL….
TO BE CONTINUED
Web Site: Wardman Afflication Adventures
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Addie Williams & Katie Fairchild