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

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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