From Kaye

T. he day after surgery has been up and down. Will has had quite a bit of pain, but the MDA staff seems to have it under control now. Overall I am very pleased with the staff here at MD Anderson. I know Will has been very frustrated with "feeling like a number, not a person", but their experience and organization are the best. He has gotten very personal attention since his surgery.
His most difficult issue (other than the pain & all of the tubes in his body) is not being able to swallow anything! he can suck on a sponge on a stick, but he must spit out whatever little moisture he gets. He said a big glass of ice water sounds like heaven!
They have him up and walking 3 times a day and he takes it like a trooper! Our daughter and I trade off staying with him, and it is great having her here. Our son and his family left today for KC and I will certainly miss their help..
Thanks for your prayers & thoughts -- we are both anxious to get back home amoung our friends!

Surgery Update (from Will Jr.)

Thank you for everyone's thoughts and prayers; they all meant a great deal to Mom and Dad. The surgery was a success, dad was in surgery roughly 6 hours and came out as well as can be expected. They believe they got all the cancer and did several biopsies to confirm it, we will know next week. Now the tough part begins, the initial rehab is tough and painful but as you all know Dad is pretty tough. For the next 3 weeks he is not supposed to swallow any liquids whatsoever.

Hopefully if all goes well he will leave the hospital early next week.

Again thank you for all the warm wishes.

P.S. Thanks to all the Texas Cleaver's who have opened their homes and hearts to our family.

Willie & Christy

December 28th 2008

Sunday, Houston, Texas. Finally, we are set for surgery at 7:30 a.m. Monday 12-29. The surgery will take four to 6 hours. The surgeon said that he would remove 1/2 of my stomach, and 2/3 s of my esophegas. I will be in the hospital 5-7 days and then he wants me to remain in Houston area for an additional 3-5 days so with any luck at all we will be on our way back to Kansas on the 11th or 12th of January. I will be on a feeding tube for the next month and then return to Houston for a barium test to make sure there is not leakage. If that proves to be the case then they will remove the feeding tube and I should be able to eat solid foods.
If my luck holds then they will continue to monitor the situation. I am feeling very good today I think the anxiety of sitting around and waiting has been very tough on Kaye and I know it has been on me.
We have had so much support from my brother and his family. Parties and Christmas gatherings have kept us busy. My son and his wife and 4 kids were able to join us for Christmas and they will stay until after the surgery and my daughter is coming in today to be here with Kaye during the surgery.
Thank all of you for your support, phone calls, letters and cards. I doubt that I will feel much like blogging until the middle of the week---thank you for your prayers and positive thoughts---keep them up---I am looking forward to boring you with more organ reports. Have a Happy New Year---
Will

December 22 Monday

The little kids are excited, the teenagers are acting cool and the adults are emeshed in the memories of the past. My family is so fortunate that Christmas is a time for gathering togeather and laughing and remembering Shirley, or Nanny, or Mom whose nom de christmas was Shitly Cranberries. My mother grew up hard, with her Dad dying under mysterious circumstances while loading cattle for shippmemt to Oklahoma one blizzardly day in 1908. After he and his partner each inspected each side of the loaded cattle car his partner borded the train. Albert Cross was not seen again until 2 weeks later when his body was discovered in the snow under a railroad trestle. Shirley was 8 years old. Shirleys Mother was left with a farm and children ranging from toddlers to adults and an Oklahoma farm. When Shirley was 14 some one mistakenly put gas in a kerosene can and when her mother attempted to start the fire it exploded and the burns resulted in her mother's death. Shirley was farmed out with and older sister. Shirley married Dad at 19, her first son died, and in 1946 she was divorced with 4 children, working as a cook in a resteraunt, sold brassieres door to door and cleaned houses. Dad had hit the road following the wheatharvest, and picking fruit in the northwest.
The story of Shitley began with a letter addressed to Shitley Cleaver and the Cranberry appellation resulted from a trip to the store to purchase Christmas dinner. Shirley couldnt find Cranberries. When she wrote the check for groceries the clerk said "that is an appropriate name for this time of year" Shirley said "Cleaver" and the clerk said no "Cranberries". Mother had signed the check "Shirley Cranberries". So of course she became "Shitley Cranberries" or to all of us Mother Christmas. She has been gone for many years but Shirley is always with us this time of year. Years after her death my wife said I will always remember our Christmas at your Mothers filled with laughter. May all of your Christmas be filled with laughter and love---I do not remember the presents, but I remember the ornriness, the jokes, and the laughter. May you Christmas' be filled with the same. AND MERRY CHRISTMAS FROM SHITLEY CRANBERRIES AND THE CRANBERRY KIDS.

It has not been smooth. The preliminary test indicated that my liver was inflamed and caused concern that the cancer had It spread. So last Monday they did a liver biopsy. I did not get the results until Thursday and then the doctor was an hour late. Since the liver involvment would significantly reduce my chances of survival from 80 per cent to less than 30 per cent you might accurately conclude I was somewhat apprehensive and quite irritated that the doctor dwaddled around for over and hour before he finally walked in and said "good news". Talk about conflicted, I was torn between strangling him and hugging him but settled for "thank you" while muttering under my breath "asshole". We are now back on the surgery tract and I am sceduled for surgery Dec 29th, assuming something else doesnt fall off the truck. We are staying with my brother at his place on Lake Conroe. It is a very shallow lake so we took is pontoon boat out for and ride and we managed to bottom out and kill the engine. So yesterday we sat out on the lake, the weather was fine, and we managed to contact someone who said then would come out and tow us. We messsed with the engine for 20 to 30 minutes when it occurred to me that may be the kill switch was not holding. Sure enough once we held that in the boat started and we churned our way out of the mud and back to the dock.
We will celebrate Christmas here in Houston with my brother and his family. My son is going to bring his family down for Christmas and my daughter will be down right after Christmas for the surgery.
So now I am back to worrying about the surgery rather than whehther or not the cancer has spread.

I am hoping to be in San Carlos around the middle of Feburary. It will all depend on how well I surge back from the cutting.
Have a good Holiday and we will look forward to lacerating the waters around SC in Feb.
The weather here is damp but warm. We will try the lake again and tonight we are going over to my niece and nephews for the office Christmas party. My brother is exicited because I can be his designated driver---and me I am excitied to be anywhere.
Will

December 18th 2008

GOOD NEWS! The liver biopsy was negative so I am back on the surgery track. We are currently trying to get that sceduled. Thank you all for your support. It has been a very tough week but it sure as hell had a good ending. JUST got a call from the surgeon and it is my understanding that we are back on the surgery scedule for the 29th of December. So, not that I have any control over the damned schedule, I am assuming that we will proceed at that time.
Later,
Will

Monday December 16 2008

MD is a big efficient machine with each portion set up to do it's job efficiently. You get the distinct impression that you are whatever test they are conducting and if it indicates something that is not in their department then they dont seem to have a lot of interest. The surgeon's reaction when he saw the hot spot on the liver was "Im done here and there is not much to say to you until we find out whether surgery is an option so you need to move on". I only hang in here because those who seem to know say they are the best at assessing and composing the treatment protocol.
The liver biopsy will take place this morning and will take about 4 hours. They will stick a needle in to the liver and start withdrawing tissue until the pathologists determines if they have enough to make the diagnosis. We have an appointment Thursday with the Oncologists who, I assume will tell us the results and the next course of action. I will ask this morning if we can get some idea of the results before Thursday but I have the feeling they are going to say "Not my deparment we just do the test and those that talk about the test will talk about the test.
We had a very pleasant week-end celebrating my brother's birthday with his ornery family. Then we went to the lake. Saturday night we watched "Johnny Carson's compilation of 30 years of the Tonight Show". It was great fun to watch and we laughed all evening. What a great flood of memories. Sunday Kaye and I came back to Pearland and we are now waiting to leave for the hospital. Of course I can't eat or drink anything so here I sit at the computer boring all of you with the munutia of my week end.
So 50 years after joining the military I am putting to use what I was taught in the service. "Hurry up and Wait".
So it goes

Friday

The pet scan at MD indicated a problems with the liver. They are going to do a liver biopsy we think Monday. They think it is just the radiation but if the liver is involved they will not perform surgery and I will have to pursue other avenues of treatment. Right now we are hoping that the liver indication is related to radiation and not spreading of the cancer. I would have to say I am not particularly impressed with MD and I may leave here and return to Olathe. I feel like I am caught up in a big impersonal machine here and that is not a good feeling.

December 9th 2008

We left Olathe around noon Saturday Dec 6th and spent the night with my sister in Wichita. Woke up early Sunday morning and was on the road by 4:30 am and arrived in Pearland, Texas around 4 p.m.. Our kids and my brother Ron and June's kids had decoratated the house for Christmans and in almost every rood there were family pictures of our kids, grandkids and Ron and Junes kids and grandkids. What a neat and wonderful idea. Ron of course is regaling us with the state of he nation, politics and the economy. Kaye has take my traditional place in the arguments so all I do is sit and listen to the wisdom that pores forth from those 2---June and I just eat food and watch.
Monday the did the nuclear cardio vascular testing and the nuclear PET. It was a long and arudous day. At least they kept me bust and uncomfortable, poor Kaye just sat and waited. Today they are going to do the Endoscopic Ultrasound (the basically put you under and then scope the throat and perform ultra sound to "re-state the cancer". We meet with the surgeon and anestitisist(sp) on Wed and then they deciced the next step which will proably be surgery.
If they perform the surgery Thursday thet indicate 6-8 hrs. Then I will be in ICU and on a feeding tube for 2-3 days and after that they try to get me back on solid food. As soon as I can tolerate solid food they will allow me to go home. They anticipate that will be 7-10 days. We will remain here in Texas until after Christmas to deal with any complications (a common one is leaking around where they re-attach the stomach to the esophagus) assuming no leaks we should be back in Olather around the first.
We have a mailing address but it is at my brothers lake hosue 13030 Wood Harbor, Montgomery, Tx 77356.
Our email seems to work okay so just email us and we will try to respond.
Will And Kaye

November 26 2008

Well, I hope everyone is ready for Thanksgiving. I caught that upper respritory thing that has been going around---not pleasant. It looks like we are not going to be able to have Willie and his family over for Thanksgiving. They are leaving on a cruise Friday and they dont want to expose the kids. I totally agree.
I have had 2 flying lessons. The third got cancelled because the plane wouldnt start. I had to cancel yesterday due to illness. I hope to get out next week assuming I am finally over this stuff.
We leave for Houston on the 6th of December and hope to have the surgery on the 11th and be back here by the first of the year.
Doesnt seem like I do much here lately except lay around---poor Kaye I think she is getting worn out from running around getting all the prescriptions filled.
The consensus is the reason we had to call EMS 3-4 weeks ago was that I had an allergic reaction to one of the scripts. They have changed it and hopefully I wont have to take anymore ambulance rides.
Just talked to my sister-in-law June down in Texas, she said Ron is down working on the house we are staying in down there and they have ordered a new couch. Now that is what I call service.
The house in Pearland, Texas did not get damaged during the hurricane, except for a small leak in the roof, but evidently it tore the trees up and filled the yard with limbs. So my brother age 7o soon to be 71 is chopping up the trees with a chain saw.
I hope everone has a great Thanksgiving.

November 16 2008

It has been a quiet week here at Lake Cedar Creek. Waiting for surgery and trying to heal. The radiation and chemo have played havoc with my digestion tract so I take a variety of pills and solutions.
I took a flying lesson yesterday. We took off from the Downtown Airport in a light sports (not experimental) airplane. It has a bubble canopy and you sit out on the nose of it. The view was great. My instructor was 23 years old and graduated from K-State in their pilot training program. He let me take off and fly but decided he should land it. I am sure I could have landed it but I might have bent it in the process. I think it will take a few more lessons before he will allow me to land. I enjoyed it so I will pursue it for now in sas much as it is a welcome distaction for now. I don't know how far I will pursue it. The expenses of it clash with my cheapness but we will see.
We will leave here December 6 0r 7th and I am sceduled for surgery on the 11th, with luck I will be back the first week of January.

November 8th 2008

So, here is the deal. We met with the KU surgeon yesterday and told him we were going to MD Anderson for a complete work up beginning and second opinion and possibly for the surgery. We will leave here on December 6-7, they test the 8-9-10th and do the surgery on December 11. However if we are not satisfied with MD we will return to KU for Surgery on the 16th. He was very supportive and urged us to get a second opionion and said he could use whatever tests MD used and that he would pencil us in for surgery but to let him know as soon as possible. If we do the surgery in Houston he suggested that we stay there at least one week after being discharged from the hosital in case there were any complications but after that if we returned to KC they can do any follow up. So now we wait!
I will try to fill out the hours with pertinent and insiteful prose---and hopefully very few organ reports.

Thursaya November 6 2008

I wrote an email to my friend Paul this morning and decided that it reflected on how I felt and would like to share it with you.
I woke up early this morning and I feel great but it is a little ridiculous to wake up at 1:30 am toss around until 2:30 am and then get up. Oh, well! I feel very good this morning. Some stomach pain, but really it is so great to feel good after the last few days.
Well, the election is over and I know your guy didn’t win---but don’t you feel a certain amount of pride in the fact that in this country anything is possible and there is little excuse for not trying to reach the stars.
I have always had an idealized concept of this country and the justice system. That is what attracted me to the law and I devoutly believe that everyone—everyone is equal before the law. It has been interesting to watch the various interviews of people on the street and their obvious pride in this country and it’ promise of equal opportunity and that we can all start from where we are at with what we have and seek whatever goal our God given talents allow us to seek.
I just finished the book on Warren Buffett “Snowball”. I urge you to buy it or check it out at the library. Buffett talks about having won the “ovary” and “geographical lottery” born of good parents in country of opportunity. In his comment on taxes he states “if you have two twin brothers born in Bangladesh and you tell them one of you must stay here and the other must go to the U.S. and pay at least 25-30% of your income in taxes, what would you choose.?
I know, I know---the U.S. and no taxes, but Buffett does make an emphatic point. I can see why he and Bill Gates hit it off so well. They are both nerdy guys who, by accident of birth and talent have created wealth beyond belief. The book even talks about why Buffett decided to leave the bulk of his estate to the Bill and Melinda Gates foundation.
There was an article the other day about the Hughes Medical Foundation that was created by Howard Hughes to avoid taxes and it has now become the largest medical charitable foundation in the world and has been responsible for some of the most dramatic changes in medicine. I think that is called serendipity .
As you may suspect I am wired tonight and I have had nothing---I take that back, I went to the Bar luncheon yesterday. I only wish people could know attorneys as I know them---for the most part you will find people who believe in this system and value the rule of law discussing ideas of liberty and justice and who work every day in the trenches to see that these values are infused in to everyday living. I am talking about the everyday average practioner that is helping people.
I often wish I had the skill and will to have become a doctor. A friend of mine says he became a lawyer because he wanted to help people but he didn’t have the talent to be a Doctor.
I have been blessed by the good care of doctors---some with good bed side manners and talent some not so much bedside manner but talented. I read horror stories every so often of those who have lost their way and perform unnecessary procedures to line their pockets, and pharmacists who dilute their medication to increase their profit or lawyers who file frivolous lawsuits---but I know that these are the exceptions and not the rule. It is easy to read the paper and think all is murder and mayhem, but the truth is the reason that it is news is that it is the exception not the rule.
Be safe and hug your family and your friends, and know that you are living in the grandest country in the world, that can always use criticism and improvement, but is nonetheless the land of opportunity.
Will

November 4th 2008

Last night I went from exhaustion to hyper. By the time I tried to go to bed I was wired and finally got up read, then went back to bed and still couldnt sleep. After tossing and turning all night I finally dozed for awhile then gave up and got up. I feel much better this morning. I am tired but not exhausted.
I have mentioned that I am trying to think of things to do rather than dwell on the surgery. I began to fixate on the idea of going back to flying. I started making some phone calls and discussed it with a flight school in Gardner. They suggested I talked to a Doctor that gave FAA physicals before I spent a lot of money. They gave me a name and I talked to him yesterday. He was not encouraging. He said that last year he had tried to get someone who had esophageal cancer through but that they were turned down by the FAA.
I think I am going out and taking a few lessons just to have something else to focus on and to see if this is just another crazy pipe dream or something I want to pursue. Who knows, can't quit before I start.
My daughter Christy said that my 14 year old grandson was following my blog so I better not tell any risque jokes---oh I dont know I was telling quite a few dirty jokes when I was that age. Someone asked how many kids and grandkids. I have a son 6'3' and 250 lbs and a daughter 5' and 1/2 inchs (if you leave off the 1/2 inch you get told about it) that my son calls his "big" sister. Christy and Kevin have Jackson, 14 and Bennett 12. Will and Kristy have Zack 11, Kaylee, 6, Kennedy 5 and Maddy 3. Of course we are all like Lake Woebegone people where all the woman are beautiful, all the Men are handsome and all the children are hansome, beautiful and intelligent.
It is always so much fun to hear people talk about their grandchildred. The faces light up as they share some precious moment. Felix and Mary Anne talked about their little 3 year old who walked out on stage at some function and immediately began to dance to everyone's delight. Aw the exhuberance of youth.
I promise not to share any stories, unless of course, it becomes apparent that you need to hear the special qualities displayed by one of my grandchildren that must be shared---none come to mind but just give me a few minutes.
KU Basketball exhitition game tonight---tune in

November 2 2008

This has been a bit of a lost weekend. The steroids went off Friday and I went down for the most difficult weekend so far. It is better this afternoon and I am hopeful that as the chemo wears off I will perk up. Pretty much a waiting game now so there wont be much to report---at least I hope that will be the case. If something comes up I will let you all know.

Thusday Oct 30 2008

Steroids are all right except that it must be similart to Manic/depressive. So far the manic has been full bore. I am thinking about buying a dog, taking flying lessons, scuba diving and of course buying a car. Fortunately Ms. Director has confiscaticasted all my credit cards check books posted my pictures and all pertinent information at local merchants and warned my friends if I call them wanting to corner the stock market--you know GM and Ford need to make bigger SUV, oh well she is just no fun.
Seriously, the steroids just seem to help push my body around where it doesnt want to go on its own--trudging is the most descriptive term to describe this "burst of energy". I am tired but I have the energy to enjoy walks and meet with friends. White count has remained fairly stable and thus I have not had to avoid crowds---ironically I am to avoid sick people. Try that going to doctors office and hospitals on a regular basis--I try to sit next to those who appear to be transporting the patients---but some times you get fooled and have to run to another chair---I try not to point and scream at the sick one "don't you infect me" as they edge nervously away from me.
Now we wait. We have an appointment at MD ADERSON on Nov. 8, so we will leave here the 6 or 7th. We meet with the Surgeon, and then they do a battery of test, PET, Endoscopic Ultra sound, cardiovascular stress test, pulmonary function test, and if all looks doable the surgery should take place around 15-16. I will be in surgery 6 hrs or so, then ICU2-3 days and they estimate with no complications out in about 10-12 days. I will be on a feeding tube and they want me to be able to eat "solid" food before the release me. I will probably stay in Houston for at least a week to 10 days and then return to KC.
Before we make the final determination about MD with are awaiting confirmation of the number of these particular types of surgeries (Trans-hietal esophagectomies) the surgeon has performed and the number the hospital has performed. KU has performed esphageal surgeries but as near as we can determine only 20 of these particular surgeries in the past 2 years and the Surgeon has only performed 13 over the last 2 years. While the KU Surgeon is obviously a skilled surgeon, according to the literature the most desirable set up is a hospital that has performed over 50 of these per year and a surgeon that has performe 20-30. That means the support personnel know what to be alerted to and there are more doctors to call upon should complications arise.
The latest, my cousin Elaine just had surgery to remove colon cancer---she has never drank or smoked but of course that is not the primary cause of colon cancer---but you ought to get some credit for something. She seems in good spirits so say prayers or think positive thoughs for her. She is a charator.
I find it reassuring that so many people have shared their cancer stories with me. This confirms my belief that we must all share this information. People are not dropping like flys because the big "C" word gets muttered. Lance Armstrong has done a magnificent joy in demonstating that Cancer is treatable and beatable. The treatment is not fun but as for mine I would not want to exchange my discomfort I have been through for that discomfort so many of our young people returning from overseas have suffered.
AARP has an excellent article on how to take care of yourself if you are going through health difficulties. I am making copies of this an will be glad to share it with anyone--just send me you address or email and I will get it out to you.
So it goes...

Monday Oct 8 2008

Today was the last day for radiation therapy and my last large chemo injection. We went in to KU MedWest at 8:15 a.m. and finally left there for the radiologists around 1:30 or 2 and left there around 4 p.m. . I would be be totally beat but they have loaded me up with so many steroids and offsetting drugs that I am tired but hyper. This will probably last until Thursday and then I will be done for about 3 days. But the good news they are done with radiation, chemo will be for one more week and then I start getting ready for the surgery. As you can imagine I am real tired of spending time in Doctors office and Hospital but I guess I may as well get use to it.
The surgery will take 5-6 hours. The biggest problem is infection, pneumonia and leakage around the incision. If it goes well, they estimate 7-14 days and could be back on solic foods withing 2-4 weeks. Some people I have talked to have had good results within 3-6 months and some I have talked to it has taken much looker---but the good news is I have talked to several who have survived more than 5 years

October 25 2008

Saturday Morning. This week was a pretty decent week. Most mornings I wake up feeling pretty good and by the afternoon I am slowing down and usually go to bed about 8:30 to 9:30. Of course I wake up early around 4am but I always wake up early. One more radiation treatment Monday and I think I will receive the large chemo dose which takes about 4 hours on Monday. That should complete that phase. The next 4-6 weeks I will be trying to get up to snuff for the surgery. I am going to try to have that done by the 15th of December. With a little luck I will be heading for Mexico in early Feburary.
For those of you who wonder about chemo and radiation--my experience has been better than I thought it would be. There have been a few bad days but overall it is just a matter of trudgeing through it and staying as active as one can. Everyone responds differently and I think I have been one of the lucky ones. The goal of this is to basically burn out the growth and leave an ulcer which is then cut out. The naseusa makes food less than attractive and the burning is like swallowing a steel brush dipped in jalepena'. The good news not every bite goes down like that--the bad news is sometimes you innocently take a swallow and your face responds like an infant given a lemon---yuck! So you stand up and bounce around trying to get it to go down---thinking that is the last time I put that shit in my mouth, then the director takes over and waggles the fork or spoon at you like your some kind of infant---okay okay like a big baby--eat your damned spinach--no--eat NO! EAT---gimme the damned fork. Life with the Director aint no pic nic. Dont tell me about Marine DI's. Have a good week-end.

Wed 0ct 22 2008

Wed Oct 22,2008
I have lost track of time but it appears that I have missed a day or two. This is the final week of my radiation. I have one left for Monday and I believe I have one more week of Chemo. The next step is the surgery. As I said earliar we haver met with the KU Surgeon and seems to have the requisite background but I have not had a chance to make it very clear that he and he alone will handle the surgery with the assisstance of a resident but not the participation. In talking with all the docs they recommend that I continue on a parallel track. By that they recommend that I go forward with the intent of the surgery at KU but seek a second opinion and approach from MD and then make a final decision.
Dr. Smalley, the radiologists, says we are on track and that I am reacting as he anticpates. He also said I would probably want to crawl in a hole after we finish because it continues to get worse even after they stop the treatment---but that is again to be anticipated. He is concerned about my weight loss since I lost 7lbs this week and he wants me ready for surgery within 6 weeks. He was quite adament that we want to proceed ASAP with the surgery. So I am bound and determine to choke down all the food I can. The problem is sometimes it just is not possible. It wants to come up before it goes down.
That is about it as far as the organ report. Is anybody doing anything fun or interesting---I dont know about you but all this cancer talk gets to be a bore. I had fun looking at my neices new house on the internet and of course I had to give her my 2 cents as to to what to do. MY sis Lois would be real proud of her. My nephew Mike just closed on his home out in the country and it sounds like a very cool place---ideal for Mike. My nephew Harold is staying busy running up and down the road between Wichita and Topeka. My son and his wife are always busy with four kids and my daughter is adjusting to Taz the wonder dog and teenagers with hormones. My wife, the director is having great fun telling me what to do and how to do it---and she is generally right. My friend Donna is worried about her horse that somehow injured himself. Both of my Bob friends are doing okay---a good day is not always a perfect day. That's just about it. The happy chronicles of Willie shall cease for now.

Exciting not fun week-end Oct 19 2008

My daughter left Friday and by that time the steroids had worn off and I was pooped. Saturday I just sort of crawled around and Kaye fixed some teriyaki stir fry. About 5 minutes later I passed out and Kaye had to call EMS and theyrushed me to the hospital. I evidently had somesort of allergic reaction to the teriyaki and my throat closed so I couldn't breath and sweat poured off me like Niagra. It was strange because I don't remember falling I just remember lieing there hoping someone got there quick. Kaye was great and EMS was great they took me to the Olathe Med Center and pumped me full of a variety of drugs and I was released around noon today. I am tired but I feel fine andOther than that it was pretty uneventful. I start my 4th week of chemo and radiation Monday and I am hoping that we can complete it on schedule.
I have no words of wisdom to impart other than:

If your not sure before you bite what isnt good or isnt right lock your lips and pass the plate onesmall bite may be too late.
Later,
Will

Thursday October 16 2008

I neglected to mention that my daughter Christy came in from California Tuesday to stay a few days and check her old man out. She went to radiology with me and met Dr. Smalley and watched the radiation treatment. Over all I think she was very impressed with the Doctor and his staff. I also think that it is helping her to be here and be as involved and see that at least for now I am not wasting away---in fact I am gaining. Kaye fixed one of her famous raw apple cakes with cream cheese---I am a little reluctant to share this since if my son sees it he will come over and eat way too much of it. I had 3 pieces last night---oh, yeah!


I woke up very early this morning but I feel very good and the only discomfort is the burning in my esophagus--sort of like swallowing a brush dipped in jalepeno.

After radiation Kaye and I and Christy went to the "Blue Tomato" a nice little gourmet restaurant in downtown De Soto for a very nice lunch. Then Christy had to take me out for a ride in my little Miata convertible--she really had a good time as did I. Came back and had a leisurely afternoon. What a gorgeous day---sunshine, convertible and good company---it doesnt get any better---well may be 30 years ago when I use to cruise with a good looking red head who is now a good looking gray head---but has a litttle more difficulty getting out of a little sports car as do I, oh well!
and so it goes...

Wed Oct 15 2008

Another day. This the beginning of the 4th week of treatment. Radiation everyday and I have my fanny pack back on. No real problems, well you either have diarrea or the other and I have the other so I would not say it is a positive experience. However I do get to experiment with a variety of pills, liquids and other sundry devices all calculated to assist but so far have not---could be why I am gaining weight, oh well. The radiation is beginning to burn the tumor out and according to the radiologists that is good because they hope to create a ulcer where the tumor is and that is good because that is the goal even if it causes pain. You know it is that old saying "No pain no gain". Someone can stick that where the sun don't shine. The truth is that they have so many counteracting and side affects reducing drugs that it has not been as bad as I thouhgt it might be.
We are still evaluating surgical options. We have met with the local surgeon and it certainly looks like a good option. I talked to my nephew Brett who is a doctor and he suggested several more questions to ask and also thought it would not be a bad idea to get a second opinion from Mayo and or MD Anderson.
We talked to MD and they said they would set an appointment with a surgeon, then they would do thier own PET and Endoscopic Ultrasoun, Cardiology study and pulmunary study then decide whether they would do the surgery and scedule within a week. KU would basically do the same thing. The KU doc has done about 125-150 of these procedures and does about 20-30 per year;
MD says they do over 200---but I dont know which doc is being propose or how many he has done. Brett suggests that I go down go through the process and if comfortable go through with it if not come back and go to KU. I have to admit the surgery is giving me more concern than I like but at this time I am pretty comfortable with KU but I dont want to forgo quality for comfort. The other problem is that sometimes there are complications post surgery and this is a consideration--oh well I am kind of worrying this in print so I will stop and play with my flight simulater program.
I close with this thought that I have composed:
Of all the things I ever knew I know this much is true if your not laughing at yourself and stupid things you do your missing all the fun that others see in you!
So it goes

Monday October 13 2008

Whew! what a week-end---I felt like I was drugged and my stomach did flip flops every time I looked at food. Went to bed at 8:30 Sunday night and slept until 4:30 and then forced myself to walk 2 miles. Today I went back to KUMED at Midland and I435 and met with Oncologist. She was pleased that the ulcers in my mouth were gone and it was time to do the heavy chemo dose of Oxiloplatin. We arrived at 9:15 and finallly left there at 2:30 pm. They used the IV and filled me up with steroids, anti-naseaus fluid, gave me a pill, then poured in the Oxiloplatin and then attached the fanny pack of 5FU chemo and sent me to the radiologists. So I am now flused with noxious chemicals and glowing with radiation---but the good news is that with the anti-naseaus meds, and steroids I feel pretty good and food even looks pretty good. We arrived home at 3 pm. I think I am going to contact that program "The Worlds Toughest Jobs". It isnt that it is so tough, as it may be a way to break in to show business.
When I was a very little boy I used to go down to the bus stop and sing songs for people waiting on the bus and often when I was riding on the bus I would day dream that I would be discovered---I am not sure by whom but I was pretty sure that if the could hear me I could make it to radio. I would go down to WIBW a local radio station where some Local Western played and sang but I was never invited to sing. When I was in the Navy after a couple of drinks I would get up to sing with the band and then I was asked to MC a special services program and sing but when I tried it stone sober I was like a deer in head lights. But hey, after the Navy I started playing the Guitar and when I was 5o A group of my friends and I formed the "Cabin Fever" band. We have played in many many venues in the KCMETRO area and had a great time for over 15 years. My old friend Mame D'Agostino told me a story that is worth sharing. She had received a academic scholaship to a very fine all woman's school in NYNY and was invited to be inducted in this exclusive club that was meeting at the Waldorf-Astoria---a very expensive hotel. She couldnt afford the price of the dinner. Her mother told her "Mame just go have a cup of coffee" and enjoy the opportunity. My show biz experience was my cup of coffee---and before I heard Mame's wonderful story I passed up some great times because I didnt think about buying a cup of coffee.
So buy the coffee---enjoy---we are all rich and healthy compared to someone else, ENJOY.

Saturday October 11 2008

Thus ends the 3rd week of treatment. Monday Doc Baranda is going to see if I can return to chemo--the radiation has been continueing. Met with the surgeon yesterday. I would be lieing if I said I wasn't a little taken aback by the extent of the surgery. It is a 6-8 hour procedure where they remove most of the esophegus and 1/3 of the stomach and pull the rest of the stomach up to attach to the esophegas. They usually try to do this 6-8 weeks after I finish chemo and radiation. They have a 95 to 98 % survival rate---you don't want to have the dubious honor of being in the minority. He has done about 125-50 of these procedures and averages about 20-30 a year. According to what I can determine that is a pretty good track record. He will not agree to the surgery until after all of the other treatment and then an evaluation as to the condition of my heart and lungs after that (evidently chemo and radiation can affect them---gee who woulda thought of that). It also takes about 4-6 weeks for the tissue around the tumor to heal enough to allow the surgery. I have to admit that not having the fanny pack has been kind of nice---the area of radiation is getting very tender because it is burning out the tumor and leaving an abcess---now that's a pleasant thought. I have been able to eat and swallow with an occasional "gulp". If all of this detail bothers you think what it does to me--actually it helps because one acquires a certain detachment---at least until the cutting starts. Having gone through a couple of major surgeries in the past I have no illusions but as I understand it, if they can determine during surgery and studies that the cancer has not gone any further then, and if I survive the surgery I have and 80% chance of beating this---
I would much rather play blackjack but my odds are better in this "casino". My friend Chuck from San Carlos sent me this:
Something you need to know with winter coming on!
It was necessary to keep a good supply of cannon balls near the cannon on old war ships. But how to prevent them from rolling about the deck was the problem. The best storage method devised was to stack them as a square based pyramid, with one ball on top, resting on four, resting on nine, which rested on sixteen. Thus, a supply of 30 cannon balls could be stacked in a small area right next to the cannon. There was only one problem -- how to prevent the bottom layer from sliding/rolling from under the others. The solution was a metal plate with 16 round indentations, called, for reasons unknown, a "Monkey". But if this plate were made of iron, the iron balls would quickly rust to it in the sea air and water environment. The solution to the rusting problem was to make them of brass -- hence, "Brass Monkeys". Few landlubbers realize that brass contracts much more and much faster than iron when chilled. Consequently, when the temperature dropped too far, the brass indentations would shrink so much that the iron cannon balls would come right off the monkey. Thus, it was quite literally, cold enough to freeze the balls off a brass monkey. And all this time, you thought that was just a vulgar expression, didn't you?

Thursday October 9 2008

I talked to Dr.Smalley yesterday and he was very encouraging. He said not to worry about suspending the chemo, that it was obviously working and that the goal was to load you with chemo until you hurt, but not kill. Once it reaches a point where it is causing ulcers and other unwanted re-actions it is time to back it off. One of the improvements in chemo therapy is that they don't have to load you up and then when it starts hitting you to hard it is too late to pull back. Today with the fanny pack they can stop it and hopefully stop the side affects and then start again.
The ulcers are subsiding so it looks like they will hit me again Monday. In the meantime the radiation continues. I am tired and other than some discomfort upper stomach and lower bowel no big deals. I am enjoying all the fat food, Mashed potatos, baked, pies---Kaye made a very good butterscotch pie and it is even better when the crust is baked. I gained 2 lbs last week and that seems to please everyone. You know you got a low performance threshold when gaining weight is cause for praise. For those of you who are impressed send me a cake, a baked potato, or someother fat food---just kidding, just kidding. I don't want Kaye to have anymore food to try to stuff down me---she is tough. I am beginning to more sympathetic to my grandkids when the are told to clean their plate---I eating as much as I can dammit---why do I have to eat the spinach--it doesnt have nearly enough calories for me. So anoter day passes, be of good cheer and eat your spinach, as for me pass me the spuds.

Monday Oct 8 2008

Went to KUMED today for chemo. Dr. Baranda thought we should delay the chemo to allow my mouth to heal. To tell the truth that was disappointing, in as much as I want to do as much damage to the cancer as I can. Oh, well. I dont quite know whether that means the chemo is working and the dosage is just a little too much and I dont know whether the delay of the chemo is all bad. I find her a little harder to read than Dr. Smally and I probably don't think fast enough ask all the questions until after I leave the office. I am scheduled to see Dr Smally tomorrow and I will ask him if it means good, bad or indifferent. The doctors drop little things during the conversation that you think--hmm, I should have asked this or that. It is hard not to get paranoid and start thinking--I should have asked this or that, did she say this or that. My wife was there but she always hears the positive and I can see any flaw and manage to project negatively and complicate rice crispies. Keeping a positive mental attitude is easy to say and sometimes hard to do. I think 99% of the time I am very positive, but I have to admit it bugs me that the chemo was delayed and I need to quit trying to guess what that means---as Kaye says it doesnt mean anything---just means a delay and the nurse said that obviously it is attacking the tissue because it is attacking the inside of my mouth so that is a positive sign.
My friend Chuck from Boston sent me this:

"Finish each day and be done with it. You have done what you could. Some blunders and absurdities no doubt crept in; forget them as soon as you can. Tomorrow is a new day; begin it well and serenely and with too high a spirit to be encumbered with your old nonsense."

Ralph Waldo Emerson

Monday Oct 8 2008

Last week I mentioned I was going to paint my garage doors. While I was at Radiation treatment Friday my dear dear friends Pat and Jim painted the garage doors---. It is a good thing because I was so tired when I got home it would have been hard for me to even get started.
Went to my Sat. morning breakfast club and as usual got no sympathy---which is probably good since I can get in to that pretty easily. Saturday pretty much layed around and read cant think of anything I did that was constructive. Went to Bob and Colleen's for dinner Sunday night. They are pursueing a vegan diet (basically all raw food). It is good but at this time in my treatment I need soft foods. My mouth just cant take any sharp objects. It is sort of like I have been chewing shards of glass so the stangest things can smart.
Monday they had me come in to radiology at 7 a.m. so I am done for the day. Tomorrow back to KUMed for the hyperdose of chemo and they will most likely re-install my fanny pack then I go to radiology. So tomorrow will be pretty much consumed and Wed will proably be a down day.
Unfortunately I am beginning to have trouble swallowing---sort of like a big pill that won't go down---then finally slides on down--for just a moment you gulp air like a guppey and then much to my relief it goes on by. I will talk to the docs but they have been asking me if I have had trouble and up until today I have not had that much trouble but today seems to be the time for that to start, oh well.
It has started to rain this afternoon. I have been so spoiled by this gorgeous weather it is impolite to complain, so I won't, well not very much.
later

Saturday Sunday October 6-7, 2008

Another day of trudging. My wife is bound and determine to keep me from losing weight and she is baking potatos, squash, chocolate pie, candy bars and anything else she can think of to get me to eat. My friend Bob, in the KC area, has come up with this herbal "tea" that is suppose to have all of these wonderful healing properties. It must be good for you because it sure as hell doesn't taste good or smell good--okay! okay! I'll drink that damned stuff, Kaye! She's tough---but I have gained back 2 lbs. I finally gave up and went to bed at 9:30 and slept until 6 a.m. which is sleeping in for me. Oh, I have to share this: Kaye decided to fix a chocolate pie, she had a frozen pie crust, turned on the oven, mixed and fixed the filling. Poured the filing in the crust and then realized that she had forgot to bake the shell---oh, well it was good pudding.
Sunday, another beautiful day. Kaye and I walked 2.3 miles up hill and down. It appears that I am much stronger in the morning and by noon I start to sludge up and the mud fills my shoes. Since I have been off the one chemo for 2 days I am hopeful that I will be a little less sludgey today. I am looking forward to enjoying the day.

Friday Oct. 3rd, 2009

The weather has just been exceptional. Yesterday was a good day. Went to Shawnee Mission Park and met Pat and Jim for "picnic". We met at the boat dock and had a nice view of the lake. Not very many people. Came home and read in the afternoon and then went for a 2 mile walk. I am still getting dizzy when I get up after radiation and they are not sure why---may be it is because these very nice young women put their arms around me and help me back to the dressing room. Doc is concerned about the sores in my mouth caused by the chemo---not all that bad but certainly would prefer not to have a sore mouth. Watched the debate last night.
Woke up tired this morning but starting to perk up. Nothing remarkable going on and that is just fine with me. I am tired this morning. So far, it has not been unrelenting tiredness so it is not like having the flu it just comes and goes so you never know---I might perk up for awhile and then it feels like I am wading through mud and I have to sit down. At this time I am wading through mud---but ten minutes from now it may change. A friend of mine was asked the other day "you seem to be happy all the time---is that an act?" and Pat said "no, I am either in a good place or assume I will be in a little while". That is a good faith to live by.
I talked to Don, my friend who taught me how to shoot skeet, he just found out he has lung cancer. It does seem a little unrelenting right now---a book I read many years ago "The Hand Book To Higher Consciousness" discusses how to re-focus negative thoughts with positive ones a real simple way to do that is to review your gratitude list, focus on others and get the hell out of self. When you are all wrapup in yourself you are in the worlds smallest package.


Just got back from the Radiologist. He sent me to KUMed---seems as if the chemo is causing ulcers in my mouth and he wants them to stop the chemo for a day or so. I am also having some equilibrium problems and dont know whether it is from the treatment or something else--so if you see me staggering around it is not from the booze.

October 2nd Thursday

It is a thin line between reporting and whining---if it seems like a whine try to read it as a report. It seems like everyday there are some good times and some hard times. We walked a mile yesterday morning, but I was tired so we came back. I am developing sores in my mouth and my tongue and lips feel like when your feet go to sleep. My appetite is good then bad almost moment to moment. The Doc was concerned because I have lost 6-8 lbds. After radiology yesterday I got up off the table and was naseous and dizzy. It took me a awhile to get my land legs back. Dr. Smalley was very positive and upbeat---but told me I really needed to keep up my weight.
So we went over to the local 56 Diner and I had a chicken fried chicken steak, mashed potatoes, gravey and corn. I sopped up the gravey with bread. This morning I had gained 1/2 lb. Who said your momma cant cook. Unfortunately the rest of the day my stomach decided to react like a washing machine and agitate. Kaye went over to babysit and left me with strict instrctions on what to do---so nice being married to Ms. Director. I received a care package from my sis Darlene and her stalwart Gerald---how did she know that I needed some Holloween candy corn.

Against the Directors orders I knew it would be good for me to walk and get some fresh air so I went out and had a nice 1.5 mile walk---listened to my friend Stephen Bennett's music---and just had as nice a time as one could want to have. Music and a beautiful day---the only thing missing was sweet babes (sleeping) and young lovers holding hands---friends it gets no better.

Yes, Kaye I really did eat a little chicken and some bread last night I didnt just cut some off and throw it away---I was tempted---my biggest disappointment was that the choclate candy that was available was tempting but everytime I thought about eating some of it my stomach did a piroette (I think that is close to the word used for dancers spinning).

Feel pretty good this morning and plan on walking this afternoon. Of course I have my radiation then we are going to meet our friends Pat and Jim for lunch at Shawnee Mission Park.

The upside of cancer seems to be you can eat any damned thing you want---the down side is you cant stand the sight of food, now who said God doesnt have a since of humor.
So it goes

September 30, 2008 Tuesday

Tuesday: This process is pretty much trudging with very little drama. It is hard not to get consumed by the logistics of getting to the doctors, the treatments and the pills. It seems to be taking on more of a routine. I am experiencing some pain and discomfort which is to be expected when they are injecting poison and burning holes in you body. The little buddy pack that I carry for the continuous chemo is more of a casual distractions than a pain. Occasionally I night I wake up somewhat involved in the chord but other than that no problem. My friend Far north Bob (lives in Minnesota) was diagnosed with colon cancer last May. He has had surgery and on going chemo since June, my friend Ron, from Winfield has had surgery and is on his second round of chemo, and has been on this trudge for a year, my friend Bob, not so far North, Lake Weatherby, has been undergoing, radiation and chemo since August. If I am lucky it appears that I will be radiatied and poisoned for about 6 weeks, then with some "luck" they will be able to to do surgery within 4-6 weeks from the last radiation/chemo so I am hoping that by January----late I can start for Mexico.
This morning I went in an got my fanny pack re-charged and went to radiation. Had a nice lunch at home with my wife I am going to work on prepping my garage doors for painting. I feel good, but as my wife is quick to point out I dont need to over do it and quite frankly that hammuck out on my patio looks pretty inviting so dont be surprised if the garage doors get left out.

Monday Sept. 29th, 2008

Kind of a lost week-end. The naseus medicine must have a tranquilizer or sleeping componet because I spent the week end feeling like I wanted to nap---which I did. Went for a walk yesterday and managed 2 miles then late added another 1/2 mile. Bob and Colleen came over for lunch.
Went over to see the grandkids---Will, my son, participated in the Shawenee Barbecue contest this week-end. He won 3rd place for brisket and and placed 17 out of 102 teams. Pretty good for his 2nd contest. It is an awful low of work but he enjoys it. I felt bad that I have not been able to help, but fortunately his friends joined in and assisted---next contest is in Desoto next week. I dont know that I will be able to assist much it will depend on my white count. I will start back with my radiation today.
What do any of you know about the vegan diet? Bob and Colleen have been following it pretty rigourisly and it seems to be helping. We are going to talk to the people they have been using. One of the problems with my cancer is the weight loss that accompanies the treatment and the need to be in shape to withstand the surgery.
Nothing on the agenda today except, my little buddy pack and radiation. If I feel like it I will join some friends for lunch.
When my daughter graduated from college and was working full time she told her mother that this work sure took up a lot of your time---Kaye said that is why they call it "work". I might say the same about this disease---it sure takes up a hell of a lot of your time.
Well, I wish I had some wisdom or insight to share but as per usual no great insights other than have a nice day. It is raining here so I will have to delay my walk.

Sunday September 29,2008

Yesterday was a tired day. I think it was from not getting enough sleep the 2 nights before. I have always gotten by on 5-7 hrs sleep or less, but the Thursday and Friday I think I only got about 4 hours then woke up wide awake each night---I don't feel anxious so it could just be all the chemicals and radiation are stimulating my system. Then of course the chemo does tend to upset ones digestive tract---with out details---too much or too little not good---right now too little so I am taking some magic elixir to adjust that--dont take a morning constituional for granted.
I finally took a pill last night and went to bed at around 8:30 pm and woke up at 6:30 am. Got up and Kaye and I walked a couple of miles trying to clear out the cobwebbs----still a little slow here at 10 am.
Nothing on the agenda today---just my little chemo fanny pack and a few pills. I will start back on Radiation Monday. I am beginning to notice that I am having more burning where they are radiating and some discomfort around the stomach---more queasiness, which is all to be expected if not exactly welcomed.

As e.e.comings says it:

mr youse needn'tbe so spry
concerning questions arty

eachhas his tastes but as for i
i likes a certain party

gimme the he-man's solid bliss
for youse ideas i'll match you

a pretty girl who naked is
is worth a milion status

I agree with ee--have a good day

Saturday Morning September 27th, 2008 Day 25

It has been 25 days since I discovered I have cancer of the esophegus. I have learned that sharing the news with friends and family is hard, but very nescessary. I have learned that in the past I have been reluctant to make inquiries or contact people going through difficult times out of some sort of odd thought that I was being intrusive---I know now that for me, I must make and effort to reach out to those who are going through these things and express my interest and concern. I think I have always had the idea that it was my job to fix it---and if I couldnt then avoid it. So for all of you dont worry about solutions---the word is support. I have had several people call me that were friends and friends of friends who have gone through this exact cancer and have survived---tough trip but a good result. By all of you reaching out I feel less isolated and more inside the herd, let me explain:
When I was first diagnosed I shared with my friend Bob that it was a bit like being a Zebra cut from the herd by a pride of lions and the other Zebras seemed to be pulling away----wishing me good luck but trying to avoid the lions. I am happy to say that by showing your support I am feeling like I am being surrounded by the herd and you all are helping me whip the lions.
At Winfield I had a hat made for Bob and myself--it has a Zebra and the logo fighting "Zebras Treatable beatable."
Finished up the first week of treatment. No real problems---feeling good most of the time.
Go Fighting Zebras--

This is the end of my first week of treatment

This is Friday. My constant fanny pack of chemo woke me up (actually Kaye) about 230 am I had rolled over the line and cut off the chemo. So it works. The problem was in getting back to sleep. Yesterday after the Radiation I became dizzy and woozey---they said my blood pressure had shot up and they thought I was dehydreated---drank 2 bottles of water, a bottle of tea, 2 cans of juice and seem to recover. Went home after stopping by and visiting by friend Al. He is going though some business problems and his 11 yr old grand-daughter has a non malignant tumor wrapped around her spinal column, she has had 2 surgeries and it has come back. Given her age it is hard to treat it--Al says she is tough. My local friend Bob has stage 4, lung and brain, but the Docs say 2 of the tumors in the brain are gone, the ones in the lungs have shrunk---so they are getting more positive. My friend Bob in Minniapolos is recovering from surgery--colon cancer and is in chemo having a rough time but hanging in there. I would be lieing if I didnt say that it gets you down a little to see so much struggle going on---but it does take your mind off the problems on Wall Street. As they say "don't sweat the small stuff--and it's all small stuff". A beautiful morning here in Olathe. Walked 2 miles and averaged 151/2 minutes a mile, not bad for an old guy. I have radiation at 10:45 then I am done until Monday, except for my little fanny pack buddy.
My Step-sister Judy sent this to me,
"Don't Quit"
When things go wrong as they sometimes will When the road yo're traveling seems all uphill When the funds are low and the debts are high And you want to smile but you have to sigh REST IF YOU MUST--BUT DONT QUIT Life is queer with its twists and turns. As everyone of us sometimes learns And many a failure turns about When he might have won if he stuck it out Don't give up though the pace seems slow You may succeed with another blow Success is failure - Turned inside out the silver tint of the clouds of doubt And you never can tell how close you are It may be near when it seems so far So stick to the fight when you're hardest hit It's when things seem worst that you Must Not Quit. ( author unkown)
But it is okay to take a rest now and then---but some of you might want to get off your butts and get this economy going

How to become a follower of this blog

How do I become a Follower of a blog?
There are several ways to become a follower of a blog. One of the easiest ways is to visit a blog that has added the Following widget and click on the "Follow this Blog" link under the "Followers" widget:
You'll then see a popup window with the options to either follow publicly or anonymously:

September 24,2008

Today was the first day of the chemo and radiation therapy. We arrived at the KU Mid West facility at Midland dr and I-435 at 8:45 a.m. . They put us in a small treatment room and used my "port" to draw blood. Then then began to pour bags of fluid down the tube aattached to the "port", Dacordron , Ativan, Alloxi, and Magnesium sulphate/calcium gluconate they are all 4-6 once bags. They all act as to combat the naseuas induced by chemo. Oxaliplatin is then induced (the strong chemo that I will receive every 3 weeks) and then the attach a pump filled with 5-FU (chemo) to the tube and I have a fanny pack. This will allow the 5-FU to flow 24/7. We finished there about 2;30 p.m. and then went to the Radiologist at Olathe Med Center. They had previously set me all up and it was just a matter of lieing on the table for about 10 minutes while they administered the radiation front and back. We went out to dinner with some friends and everything seemed to go pretty smooth. I was tired but had trouble sleeping becase the one of the chemo anti-naseous.
Wed.9.3.08
This was a tough day. The heavy dose of chemicals the day before caused me to stagger and slur my speech for a little while. I went to radiation and when I got up I staggered out of there and didnt think I could make it to the car. Went to meet with my group and had lunch with some buddies and at least felt okay to drive home. Lounged around the rest of the day and started feeling a little better. Went to bed about 10pm and woke up at 4am this morning. I feel very good and am looking forward to going for a walk and doing some projects around the house.
there is a way for you all to post on this---and also to join but I am not sufficiently versed to give you a how to---so if you dont know how just email me at either rebeldog109@gmail.com or wcleaver40@comcast.net. If any of you have poetry---yours or others send it on. If you have commnents "make them". Thanks for all your good thoughts---keep them flowing they are reciprocated. Keep my friend Bob and sister Darlene, my friend Al and his grandaughter in the flow and if there is anyone that needs special thoughts let me know and I will certainly put them on my list. My little sidekick (the continuous chemo companion that I carry around my neck or in a fanny pack) is not as distracting as I thought it would be. I set it on the night stand next to the bed and have no problems sleeping with it---I havent forgotten to grab it when I get up---as some of have to do in the middle of the night.

Well, it's a start

Yesterday was not a fun day. We had to go to KU Med (main hospital) and have them install what theyquaintly call a "Port". This is a surgically installed portal that allows them to administer the chemo. It is a clever idea and looks pleasant enough but putting it in was and all day job. We arrived at the hospital at 8:45 a.m. and they were able to work me in around 11 a.m.---not complaining they were kind enough to put me into their busy schedule at the behest of Dr. Smalley(radiologist) and Dr. Baranda(oncologist). Dr. Alley was the surgeon---and of all people I ran in to Dr. McEachen's son Bob who is an anesthiologists nurse--he wasnt on my case but it was nice to have him assure me that I was in good hands--it re-affirmed my decision to return here for treatment--did I mention that our friend and neighbor is on Dr. Smalley's staff, but I digress, which I do frequently.


They loaded me with valium and implanted the "port" just below the clavical bone on the left side of my upper chest. It is beneath the skin and channelled in to the main artery. It has a silicone center where they insert the needles through the skin and into the port for administering the chemo.


As I understand it I will be receiving one dose of chemo(Oxaliplatin)beginning today and then they will attach a fanny pack that will provide continous chemo(Fluorouracil) 24/7. I will receive Radiation 5 days a week and then an additonal dose of Ox the third week and then an additional 3 weeks of F 24/7 and Radiation. At the end of 6 weeks, hopefully they will have knocked the dog poop out of the active cancer and then decide what surgical course to take.


I am not egotistical or cruel enough to think that it was God's will to have hurricane IKE disrupt my plans to go to MD ANDERSON but I am grateful that the hurricane caused me to re-think my decicison and return to Kansas to be here with my friends and family AND I am absoutely grateful and confidant that I have found very good and kind health care providers that pick up the phone and talk to each other in order to faciltate the treatment that is needed.


I do not know much but this much I do know: God works through people--so keep working for me and others who need your heart, your help, your hand and your prayers. Oh, and for those of you who know me Good, Orderly Direction is still what I mean.



I was knocked out most of yesterday and I am still woosey today---but I would like to share a poem with you that has resonated in me throughout my life---I only hope that I have lived by its sentiments.



The poet John Donne said it best:



No man is an island, entire of itself
every man is a piece of the continent, a part of the main
if a clod be washed away by the sea,
Europe is the less, as well as if a promontory were,
as well as if a manor of thy friends or of thine own were.
Any man's death diminishes me, because I am involved in mankind
and therefore never send to know for whom the bell tolls
it tolls for thee.
-- John Donne

I dont know whether you can post on this but if you have comments or questions email me at rebeldog109@gmail.com

Heading for Home

This was an unusual Winfield. Didnt make land rush and was not able to get there until Friday---I usually spend at least 6-7 days so arriving on Friday and leaving on Sunday makes for a short trip. In addition the camp ground was closed due to the flood so everyone was scattered all over 2 counties. Our main group was congregated in the little park at Oxford about 8 miles west of Winfield. The people that run the festival were just incredible. I had a motel room in the Sonner Inn---old but clean, with showers, A/C and quiet. I only worked a 1/2 day because I was on the scedule for Thursday and Friday and did not make it. My gate Pass and my parking permit were delivered to the motel so when I checked in I was ready to head for the Stages---it had fortunately dried out enough to allow for all 4 stages. This is the first time in the 37 yrs it has been going that the fairground camping areas were closed because of the flooding.

The other thing that was a constant was Bob Black was not there. He is a friend and bandmate and we have play music and been coming to Winfield togeather since 1990. Bob was diagnosed at stage 4 cancer just 3 weeks prior to my diagnosis and because of the chemo he just couldnt make it. I would be lieing if I tried to say that wasnt a downer---.

I am glad I was able to go down but the dust and the smoke were more than I care for at this time so I am really glad I had the motel instead of camping.

Well, it all starts Monday and I cant say I am looking forward to it----it was melancholy parting with my Windfield friends, but I have every intention of seeing them here next year.

Drove back to KC on Sunday---again unusual because we are usuallly tearing down the "Pickin Parlor"---the flood carried off our brand new 20x30 canopy and all the other stuff had been picked up and put in our utility trailer and so all I had to do was pack my bag and load my car and go---hmmm, might not be a bad way to do this is sure as hell is easier---but not as much fun

Here at Winfield

Finally got through with the Radiologist around 1:30 pm Friday. They have to position you so that the radiation focal point is on the tumor. They do that by using a series of infra red beams then tatoo itty bitty dots on the chest and rib cage and then they try to line everything up and take a series of xrays as this huge arm rotates completely around the body---I felt a little like I was in the "Little Shop of Terror" and the huge plant was saying "feed me--FEED ME". All the while you have to lay perfectly still with your arms stretched above your head. This procedure took 2 sessions of about 1/2 and hour to 45 minutes---the actual treatment will take only about 8-10 minutes of radiation 5 days a week. It was by no means arduous but I can appreciate that it doesnt take much to understand torture and these people are trying to help. Im just glad they were not trying extricate information--I would have talked in another hour or so--may be 5 minutes.
But the good news is I arrived in Oxford/Winfield---because of the flooding at the Winfield Fairgrounds no one was able to camp there so camp sites are scattered all over---most of the people that congregate at the Cabinfever site were at the Oxford park in Oxford, Ks which is about 8 miles from Winfield. Yes! we picked and grinned and had a very good time---as many of you know there is Winfield with the stages and entertainers and then there are the camp sites with all the jam sessions--it is like having a family re-union every year. The only down part was that Bob Black hasnt been able to come, he has stage IV lung, brain and spinal cancer--he was diagnosed just 3 weeks before I was---he too is a member of the FIGHTING ZEBRAS. I will discuss the fighting zebras in a later post--chow!

Getting there

Well it has been 2 weeks since I discovered I have cancer. Starting Monday 9-15 things began to move. Had the PET, then the Endoscopic ultra-sound Tuesday, met with Dr. Baranda at KU Med Tuesday afternoon, then met with Dr. Smalley the radiologist for over 2 hours on Thursday and began the preparation for the radiation treatment. Today I go back to the Radiologists and do some additional testing. Monday they will surgically install a "port" in my chest and Wed they will begin simultaneous chemo and radiation treatment. The docs indicate that it will start to get tough around week 3. The radiologist is optimistic that he can kill the tumor with radiation and drugs and then the next step is the surgical removal of the tumor. This aspect is the most harrowing as it involves a complex operation. The concern is the state of my health at the end of the chemo/radiation. If I can tolerate it they say my chances of surviving are very good. If I cannot tolerate the surgery then the odds are worse for the cancer re-occuring. I am eager to start the treatment because Adenocarcinoma is a very fast growing cancer---and it would be great to get it whipped quickly before it spreads furthur.

Still September Whirlwind

Met with Docs--looks like stage II--early III start chemo and radiation therapy next week. Meet with Radiologist this morning and go over procedure---then I am heading for the Winfield Music Festival. Chow!

A Whirlwind of a September

Sept. 2nd, 2008. I had been having what I thought gas and some slight difficulty swallowing so on my birthday I had an Endoscopic exam where they stick a camera down the throat. On Sept. 3rd the Doc called and said it was Esophegeal cancer. The following day a CAT scan did not disclose that it has spread but it is inconclusive so set up another test called Endoscopic Ultra sound for Sept 12--tried to get in to see an Oncologist--at Olathe Med, KU and MD Anderson in Houston. The earliest appt. I could get was 9-17. Olathe Doc had cancellation and finally got in to see him on Sept 9th. He suggested a PET to be able to stage the cancer and set it for Monday 9-15. Then MD Anderson called and said they could see me on 9-11. So we threw everthing we thought we might need for the next few weeks in the car and made arrangements to go to Houston for staging and treatment. I have a brother that is a builder in Houston and has a house in Pearland, Tx---10 miles from MD and it is furnished and vacant--sounds perfect, highly rated cancer clinic, near family and ready to go. We arrive in Houston on Wed 9-10 and we of course are on the eve of Hurricane Ike. We arrive at MD Anderson on Thursday and they are suppose to start testing Thursday and Friday. MD is a zoo--they are going to close the outpatient clinic Friday due to IKE and so they are only able to do one test on Thursday--cancelled Friday's test (endoscopic ultra sound--I had cancelled the one schedule in KC for 9-12 because MD had called) and now MD had set it off for another week and do not scedule the PET---everything was on hold due to Hurricane IKE----so there I am staying with m brother at Lake Conroe--just north of Houston--the Pearland house is in a potential flood zone if IKE hits--nothing scheduled for a 10 days in Houston and waiting on a Hurricane.
Luckily I had not cancelled the PET scan I had scheduled at the Olathe Med Center and I had not cancelled an appointment I had with a KU Oncologists. So back in the car on Friday on the phone trying to re-schedule the Endoscopic ultra sound--got it scheduled for Sept. 16th.
Arrived back in Olathe---helped my son with his first Barbecue contest---came in 12th out of 27 teams.
Monday Sept 15th had the PET, today I am scheduled for the Orthoscopic Ultra sound. I am to meet with the KU oncologists this afternoon and have an appointment with the Olathe oncologists for Thusday 9-18. I am hopeful that we can get this staged and get a treatment plan and fearful that they will tell me what's the point?
Since many people (including me) think positive thoughts and/or prayers work I would ask you all to engage in them.
It sounds like best case scenario is an arduous 3-4 months or worst case...well let's not go there. Last but not least the Walnut Valley Music Festival starts this week. I had to cancel MCing because of this minor distraction--BUT IF THE DOCTORS DO NOT SCHEDULE SOMETHING I AM HEADING FOR WINFIELD AND A LITTLE PICKIN' LATE THURSDAY OR EARLY FRIDAY. NOW THAT IS PRAYER!!!

I will try to keep you posted