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