Here it is October! We read that for every day one spends in the Hospital it takes about 7 days to recover. By our calculations I should start getting better in August and that seems just about when I started getting back my strength. We just returned from California (where we visited our daughter and watched the grandkids play soccer and then went on up to Washington state just across the Colombia river from Portland, Oregon where we visited Kaye's brother. His daughter and family lives in the same area so we were able to have a nice visit with them. Drove over to the coast to see the beautiful shoreline and enjoyed a great seafood dinner. I survived the trip and even gained a couple of pounds. It is great to be back in one's own bed even though the weather in Washington and Kansas seem about the same---wet, cloudy and chilly. Oh, well.
I go in for more testing in the next week and we our hopeful that the big C is in remission. I will let you know. In the mean time take care and enjoy!
Sunday, October 25, 2009
Monday, September 21, 2009
It has been quite a while since I posted and I suppose I have lost my huge audience, oh well. The reason I have not been bloggging is that I have not had the energy to sit at the computer. They finally removed the feeding tube in mid August and I have been gaining strength since that time. I even went to Winfield and was able to stay 2 days. We stayed at a motel. After 2 days I had to get back to my own bed. First night home I went to bed at 7:30 pm and didnt wake up until 7 a.m. Right now it is just a process of slow recovery and periodic scans to see if the cancer comes back. I weigh 154 lbs and still struggle to eat. Food is like medicine I have to take in a certain amout but I sure dont like it. Because of the reduced size of my stomach I have to eat 6 times a day---its great to drop a little weight but I dont recommend this diet to anyone. I hope everyone is doing well and let me know if you are still following the blog. My email is wcleaver40@comcast.net
Later,
Will
Later,
Will
Saturday, July 4, 2009
4th of July, 2009, from Kaye
I apologize to Will's friends for not updating his blog. Every day, I kept thinking he would have the energy to do this himself. To summarize:
After the abdomianl pain continuing long after the surgery had healed, in April the doctors recommended he do a PET scan, EGD & xray to determine why he still had pain. The good news: no sign of cancer and the esophectomy had healed nicely. The only thing they could see was a calcified gall bladder. They recommended that he have his gall bladder removed, which was done in mid-May. The need for pain pills was preventing him from the eating and walking that he needed to do to regain his strength & energy. After recovering from the gall bladder surgery, the pain is considerably less and he is eating about 1200 calories per day and walking 20-25 minutes per day.
It is a very slow process, since his stomach can only hold about 1 cup of food at a time. But they assure us it will stretch in time; just cannot tell us how much time. The return of his energy and strength is so slow that sometimes he has a hard time seeing his progress! But he takes my word for it. I can see a big difference since the gall bladder surgery.
So, we plug along every day, trying for a hundred more calories and another block to add to our walks. He's tough, he will get there, we just need patience and to keep our eye on the ball.
I cannot tell you how much your emails and cards mean to him. They sure perk him up and give him something to be grateful for.
After the abdomianl pain continuing long after the surgery had healed, in April the doctors recommended he do a PET scan, EGD & xray to determine why he still had pain. The good news: no sign of cancer and the esophectomy had healed nicely. The only thing they could see was a calcified gall bladder. They recommended that he have his gall bladder removed, which was done in mid-May. The need for pain pills was preventing him from the eating and walking that he needed to do to regain his strength & energy. After recovering from the gall bladder surgery, the pain is considerably less and he is eating about 1200 calories per day and walking 20-25 minutes per day.
It is a very slow process, since his stomach can only hold about 1 cup of food at a time. But they assure us it will stretch in time; just cannot tell us how much time. The return of his energy and strength is so slow that sometimes he has a hard time seeing his progress! But he takes my word for it. I can see a big difference since the gall bladder surgery.
So, we plug along every day, trying for a hundred more calories and another block to add to our walks. He's tough, he will get there, we just need patience and to keep our eye on the ball.
I cannot tell you how much your emails and cards mean to him. They sure perk him up and give him something to be grateful for.
Wednesday, March 18, 2009
Well, it has been a while since I shared with everyone and updated the blog. Finally dischared from intensive care at MDANDERSON late January early Feb. Stayed in Texas for 2 weeks at the Surgeons request and returned to Kansas around Valentines Kaye and I went back to Texas around March 10th for a follow up visit. MyTexas Surgeon is very positive about eventual recovery---note eventual---not necessarily speedy
I have been back to my local doctors and they are also optomistic----
As for Kaye and I it is a daily struggle dealing with the desease and the logistics of getting to the doctors and keeping track of the medications. I have been so out of it poor Kaye has had to bare the brunt of keeping track of the meds the doctors, etc.
I am trying to walk everday---but it is a struggle.
Later,
Will
I have been back to my local doctors and they are also optomistic----
As for Kaye and I it is a daily struggle dealing with the desease and the logistics of getting to the doctors and keeping track of the medications. I have been so out of it poor Kaye has had to bare the brunt of keeping track of the meds the doctors, etc.
I am trying to walk everday---but it is a struggle.
Later,
Will
Monday, February 23, 2009
Monday February 23 2009
Well, here I am again. We arrived home from Texas about 2 weeks ago but I have not felt like I have had the energy to sit down and make an entry until today. I guess I am on schedule. Dr. Smalley asked me if I felf worse today than I did yesterday. After careful considereation I said I don't feel worse today than I did yesterday. He said good if your not feeling worse you are getting better and so that is what I would say to you... I am getting better but it is damned hard to see.
This is now Tueday. I tried to post this yesterday but it wouldnt post and I got fed up and quit. I must be feeling better because I dont feel worse than I felt yesterday. In fact today I feel pretty good. I walked all the way to the mail box and and we over to the Smith's for a short vistit---wow we are getting to be social gad flys.
I will be taking this time to try to thank everyone for theire cards and letters and the incredibel support ---I hope your thoughtfulness has changed me to be a little more conscioncious about staying in contact and to keep encouraging people who are going trouh difficult times.
It truly is amazing---this last Sunday I didn't think I would ever feel good again---my poor body was so beat up all it could do was lay around and sleep. I am a long way from well but I am sure as hell getting better and that is something I can really look forward too.
And so it goes....
This is now Tueday. I tried to post this yesterday but it wouldnt post and I got fed up and quit. I must be feeling better because I dont feel worse than I felt yesterday. In fact today I feel pretty good. I walked all the way to the mail box and and we over to the Smith's for a short vistit---wow we are getting to be social gad flys.
I will be taking this time to try to thank everyone for theire cards and letters and the incredibel support ---I hope your thoughtfulness has changed me to be a little more conscioncious about staying in contact and to keep encouraging people who are going trouh difficult times.
It truly is amazing---this last Sunday I didn't think I would ever feel good again---my poor body was so beat up all it could do was lay around and sleep. I am a long way from well but I am sure as hell getting better and that is something I can really look forward too.
And so it goes....
Sunday, February 15, 2009
From Kaye, Sunday, Feb 15th:
We arrive home Friday afternoon after a two day trip from Houston. It seemed like we have been gone for months! We both were tired from the trip and Will is still pretty wiped out. That is why I am updating his blog. Hopefully, he will feel like updating you in a day or two.
Thanks for all your concern and encouragement.
We arrive home Friday afternoon after a two day trip from Houston. It seemed like we have been gone for months! We both were tired from the trip and Will is still pretty wiped out. That is why I am updating his blog. Hopefully, he will feel like updating you in a day or two.
Thanks for all your concern and encouragement.
Tuesday, February 3, 2009
Tusday Feb 3rd 2009
Kaye has been after me to update the blog. It is hard to do when memory fades quicker than fireworks on the 4th of July. If I repete myself remember it is still pretty accurate---lets face it my lfe has been pretty much routine---lots of pain, fear, and boredom. As Kaye said WE ARE FINALLY OUT OF THE HOSPITAL. I am still hung with tubes.:drainage tubes and feeding. tubes. The doctor has been allowing me to drink some apple jucie, water and coffee. The last thing I had by mouth was December 28th. One tends to day dream about how good the coffee juice or tea will taste. NOT! It seems like my taste buds have become supper critics---what in hell are you putting that stuff in here.
Of course I can not eat any food or take any medication down the throat so Kaye has to crush the pills and then mix it with water and then we mix up this stuff that looks like grits and it pumps though a tube that by passes my stomach and goes directly in to my small intestine. This may go on for weeks or months depending on how the stomach heals.
BUT LEST I FORGET IT---DURING SURGERY THEY TESTED THE SITE AND 12 LYMP NODES AND COULD FIND NO CANCER.
We plan on returning to Olathe around the 16-18 of Feb. Keep those prayers and positive thoughts coming---you, of course are in mine daily.
Will
Of course I can not eat any food or take any medication down the throat so Kaye has to crush the pills and then mix it with water and then we mix up this stuff that looks like grits and it pumps though a tube that by passes my stomach and goes directly in to my small intestine. This may go on for weeks or months depending on how the stomach heals.
BUT LEST I FORGET IT---DURING SURGERY THEY TESTED THE SITE AND 12 LYMP NODES AND COULD FIND NO CANCER.
We plan on returning to Olathe around the 16-18 of Feb. Keep those prayers and positive thoughts coming---you, of course are in mine daily.
Will
Friday, January 30, 2009
From Kaye, Jan 30th
HOORAY!! Will will be dismissed from the hospital tomorrow!
We will stay at his brother's house for 12-14 days and hope to be at home in KC by Feb 15th. He still has a lot of recovery to do. He is weak, but walking and rest should put him at 80% of normal within a month. At least that is what the doctor tells us. Of course, rest is not something Will is used to, so we will see. I may just have to turn into a controlling and demanding wife for a few weeks.
It will be so good to begin to re-join the real world.
I cannot tell you how much it has meant to Will and myself and how much it encouraged him to hear from his friends and family through this ordeal. Thanks again, for all of your thoughts and prayers. We certainly needed and appreciated them.
Love and gratitude to each one of you.
We will stay at his brother's house for 12-14 days and hope to be at home in KC by Feb 15th. He still has a lot of recovery to do. He is weak, but walking and rest should put him at 80% of normal within a month. At least that is what the doctor tells us. Of course, rest is not something Will is used to, so we will see. I may just have to turn into a controlling and demanding wife for a few weeks.
It will be so good to begin to re-join the real world.
I cannot tell you how much it has meant to Will and myself and how much it encouraged him to hear from his friends and family through this ordeal. Thanks again, for all of your thoughts and prayers. We certainly needed and appreciated them.
Love and gratitude to each one of you.
Saturday, January 24, 2009
1-24-009
This has been nightmare. Starting with the sugery. Pneumomiia, now I am on a feeding tube--I can't eat and I cant breathe very well---y0u just try not to painic and try to remember to think happy thoughts and do yoga breathing (Bennett came up with that).
My plan ia to build my strength up and return to KC---I will be looking fir someome to stretch the throat muscle and to help me in rehab.
I do not plan on doing anything else here----ececpt get out ou town
My plan ia to build my strength up and return to KC---I will be looking fir someome to stretch the throat muscle and to help me in rehab.
I do not plan on doing anything else here----ececpt get out ou town
Friday, January 23, 2009
from Kaye, Jan 23rd
It has been an uneventful day, thank goodness! Two days ago, they performed a tracheoctomy on Will so he would not have to have the tube down his windpipe, which he hated. With a trach, he can be ventilated or breathe on his own with a little oxygen. This way he can be weined from the ventilator. Yesterday he breathed on his own for 5 hours, but his heart rate went up and they changed back to the ventilator. He's been on that ever since. They want his heart rate to stay below 120 before trying the breathing on his own.
The doctors assure me that his full recovery is not in doubt. It's just that with the pneumonia, infection, etc, his recovery will be very slow and may take several months. Hopefully, we will be out of the hospital in 10 to 12 days and then to Ron's house for a few days before starting home.
We are so anxious to get home!
A couple of you have asked me how I feel now about our decision to come to MD Anderson for the surgery. Mixed feelings: glad that we were here when all of the complications came up, but sure miss home, friends and kids since we had to be gone much,much longer than we expected.
I am staying in the ICU room with Will and every 3rd day, his brother, Ron, comes from noon to 8:00 pm to relieve me. The ICU room has a recliner chair that converts to a single bed that I sleep on. The cafeteria food and restrooms leave something to be desired -- a little like camping out without the scenery! And of course, visitors all through the night: drawing blood, inhalation therapy and giving shots, etc. From now on, every time I crawl into my own bed and shower in my own bathroom, I will be grateful!
All in all, mostly what we need is patience, I'm not even sure that is the way to spell the word. Daily improvement comes in very small steps. Patience has never been one of Will's strong suits and I haven't noticed that I have an abundance either. So if you have any extra, please send right away!
Thanks to all of you who have sent comments on the blog and emails to Will via me. I am in the process of reading them to him and it is so good for him.
The doctors assure me that his full recovery is not in doubt. It's just that with the pneumonia, infection, etc, his recovery will be very slow and may take several months. Hopefully, we will be out of the hospital in 10 to 12 days and then to Ron's house for a few days before starting home.
We are so anxious to get home!
A couple of you have asked me how I feel now about our decision to come to MD Anderson for the surgery. Mixed feelings: glad that we were here when all of the complications came up, but sure miss home, friends and kids since we had to be gone much,much longer than we expected.
I am staying in the ICU room with Will and every 3rd day, his brother, Ron, comes from noon to 8:00 pm to relieve me. The ICU room has a recliner chair that converts to a single bed that I sleep on. The cafeteria food and restrooms leave something to be desired -- a little like camping out without the scenery! And of course, visitors all through the night: drawing blood, inhalation therapy and giving shots, etc. From now on, every time I crawl into my own bed and shower in my own bathroom, I will be grateful!
All in all, mostly what we need is patience, I'm not even sure that is the way to spell the word. Daily improvement comes in very small steps. Patience has never been one of Will's strong suits and I haven't noticed that I have an abundance either. So if you have any extra, please send right away!
Thanks to all of you who have sent comments on the blog and emails to Will via me. I am in the process of reading them to him and it is so good for him.
Wednesday, January 21, 2009
From Kaye, Jan 21st
We cannot have cell phones in ICU, but I know Will would like to hear from his friends. Please send your words of encouragement by replying to this blog or send emails to me, kayecleaver@comcast.net and I will read them to him.
Tuesday, January 20, 2009
Tuesday, Jan. 20th - from Christy
Last night, about 1am, Will was intubated again, because of his body had a high level of CO2. The high CO2 levels were caused in part by diuretics he is taking to help his body get rid of fluids he is retaining. This morning the doctors decided it would be best to do a tracheotomy, which would be more comfortable for Will, allow the doctors to wean him off the ventilator easier, and allow him to be more mobile. With all of this, Will has been sedated today and tomorrow they will bring him out of the sedation and begin to reduce the work the ventilator is doing, and let his body resume the work. He will stay in the ICU for a few more days. We will know more in the next day or so.
If anyone would like to send a card or note, you can mail it to:'
M.D. Anderson Hospital
William Cleaver
7th Floor, C24
P.O. Box 300206
Houston, TX 77230-0206
Thanks to everyone who has called, emailed, and sent positive thoughts and prayers our way. We hope this will be the last bump in the road to recovery.
If anyone would like to send a card or note, you can mail it to:'
M.D. Anderson Hospital
William Cleaver
7th Floor, C24
P.O. Box 300206
Houston, TX 77230-0206
Thanks to everyone who has called, emailed, and sent positive thoughts and prayers our way. We hope this will be the last bump in the road to recovery.
Sunday, January 18, 2009
from Kaye, Sunday, Jan18th, 2009
Will is much better today. He is off the intubator and breathing on his own, but still in IC U. We hope he will be moved to a room today.
Christy came in from California yesterday, so I came to Ron's and got a good night's sleep in a real bed! I feel much better. It is so great to have adult children.
Hopefully, in a day or two, Will will be able to resume control of this blog.
Thanks for all your thoughts and prayers.
Christy came in from California yesterday, so I came to Ron's and got a good night's sleep in a real bed! I feel much better. It is so great to have adult children.
Hopefully, in a day or two, Will will be able to resume control of this blog.
Thanks for all your thoughts and prayers.
Wednesday, January 14, 2009
From Kaye, Wed., Jan 14th
It has been a very tough week for Will. He has had problems with his breathing from the pneumonia which kept him from walking very much, which slowed his recovery from surgery. In addition, the shortness of breath and 9 IVs caused him so much nervous agitation that he never slept more thann 1 or 2 hours at a time. Finally, yesterday they put him back in ICU to give him more assistance in his breathing. Last nite they inctubated and sedated him to give him more oxygen and rest. However, The doctor who performed the bronchosophy and suctioned his lungs this afternoon said his lungs were better than she expected from the xrays. The doctors told me they want him in ICU for 2-3 days to rest and breath easy, before he goes back to the floor. They warned me he would be weakened from being inactive in ICU and would need to rebuild his strength before leaving the hospital. So it looks like another week in the hospital.
I would never had made it if it were not for my kids. Willie was here for 4 days last weekend and Christy is flying in this Sat for 4 days. While Will is in ICU I am not staying overnite in the hospital, he is sedated and doesn't know whether I am there or not. The last time I remember being so tired was after childbirth. So I will take advantage and sleep in a real bed for a couple of nights.
Thanks for your cards and phone calls. I know you will understand if I do not get everyone called back right now. But I check Will's cell phone and tell him you called and he always smiles!
I would never had made it if it were not for my kids. Willie was here for 4 days last weekend and Christy is flying in this Sat for 4 days. While Will is in ICU I am not staying overnite in the hospital, he is sedated and doesn't know whether I am there or not. The last time I remember being so tired was after childbirth. So I will take advantage and sleep in a real bed for a couple of nights.
Thanks for your cards and phone calls. I know you will understand if I do not get everyone called back right now. But I check Will's cell phone and tell him you called and he always smiles!
Friday, January 9, 2009
Update (from Willie)
Over the past 2 weeks we have all come to learn that there are no big steps forward in this process but little steps backwards and forwards and that you hope you take more steps forward each day. I was fortunate enough to make it back down to Houston today and plan on staying here until Tuesday. Dad is doing better each day but still has little energy. I know a lot of people have left messages on his phone and I will try and call everyone Saturday and Sunday. At this point Dad will be here through the middle of the next week and plans to stay down in Houston for several weeks in case of complicaitons. If I know him they will be in Mexico by Febuarary.
In case you did not know the biospsies came back negative (wooo hooo)....
Thank you all for your thoughts and prayers.
Willie
In case you did not know the biospsies came back negative (wooo hooo)....
Thank you all for your thoughts and prayers.
Willie
Thursday, January 8, 2009
JAN 08 2009
Kaye gave the last update and I will attempt a very small update. It looks like every time we get one thing In cinc something else pops out. Kaye has been through absolute unmitigated hell, the entire staff are wonderful and it has been unmitigated hell for me. We are hoping for a ticket out of the hospital by Sunday but who knows.
Love to everyone and prayers to you keep them coming---we need them
Love to everyone and prayers to you keep them coming---we need them
Monday, January 5, 2009
Monday, Jan 5th from Kaye:
Good News! Will left ICU today and we are back on the floor at MDA. After several tests, they decided his heart arhythms would not be threatening and could be treated with drugs. He is still weak and some what disoriented, but at least he was up and walking (about 25 ft) today. So we are back to recovering from the surgery, pneumonia, etc.
I hope we will be out of the hospital by the end of this week and back in KC the end of the following week. It will be sooooo good to be home!!
(Thanks for your support.)
Good News! Will left ICU today and we are back on the floor at MDA. After several tests, they decided his heart arhythms would not be threatening and could be treated with drugs. He is still weak and some what disoriented, but at least he was up and walking (about 25 ft) today. So we are back to recovering from the surgery, pneumonia, etc.
I hope we will be out of the hospital by the end of this week and back in KC the end of the following week. It will be sooooo good to be home!!
(Thanks for your support.)
Saturday, January 3, 2009
Jan 3rd, from Kaye
I finally figured out how to update this blog!
Yesterday afternoon we had a setback. Will developed pneumonia and an infection in his chest. So they immediately took him back to surgery and re-opened the chest to clean out the infection and check on his lungs. He spent the night in Critical care on a ventilator and is still there, because when they removed the ventilater, his heart starting racing and they had to give him some medication by IV to stabilize it. They want him to stay in C..tical Care to moniter his heart. So all of this puts us back to day 1. He will probably be in the hospital until next Friday.
Thank goodness, our daughter, Christy, was here from Monday thru Friday and we took turns staying at the hospital with him. Ron & June (Will's brother and sister in law) have been great. I don't know what I would have done without them. Will, our son and his wife & kids went back to Johnson County last Tuesday, but we sure enjoyed them here for Xmas and I was glad to have them here for the surgery.
Anyway, it is a setback and more pain & suffering for Will, but today, he was resting good, breathing good, and pretty goofy from all the pain medicine. While sleeping, he would slowly bring his hand up, clutching an imaginery coffee cup and bring it to his lips for a sip of coffee.
Poor guy, that is the closest he will get to coffee for a month!
Yesterday afternoon we had a setback. Will developed pneumonia and an infection in his chest. So they immediately took him back to surgery and re-opened the chest to clean out the infection and check on his lungs. He spent the night in Critical care on a ventilator and is still there, because when they removed the ventilater, his heart starting racing and they had to give him some medication by IV to stabilize it. They want him to stay in C..tical Care to moniter his heart. So all of this puts us back to day 1. He will probably be in the hospital until next Friday.
Thank goodness, our daughter, Christy, was here from Monday thru Friday and we took turns staying at the hospital with him. Ron & June (Will's brother and sister in law) have been great. I don't know what I would have done without them. Will, our son and his wife & kids went back to Johnson County last Tuesday, but we sure enjoyed them here for Xmas and I was glad to have them here for the surgery.
Anyway, it is a setback and more pain & suffering for Will, but today, he was resting good, breathing good, and pretty goofy from all the pain medicine. While sleeping, he would slowly bring his hand up, clutching an imaginery coffee cup and bring it to his lips for a sip of coffee.
Poor guy, that is the closest he will get to coffee for a month!
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