Thursday, May 14, 2009
Good news at the end of a tough day
10:30 p.m. and we just finished our fourth walk of the day. It always amazes me how fast things can spin on a dime after surgery. Clem is getting out of the bed on his own, his catheter will come out tomorrow, his GI function seems to be working, and the nausea and pain is now in check. I am anticipating a good nights rest and more improvement tomorrow.
The Recovery Nazi
It is 9:45 a.m. and Clem is finally calm for the first time in about 12 hours. The charge nurse came and supervised his care this morning which proved to be our salvation. His ostomy bag began leaking again this morning around 3 a.m. but we opted to do the best we could to prevent major catastrophe and call upon experts in the morning. That proved to be a good strategy because not only did we get much more experienced people but we got special gear to accommodate his particular problem. Susan was very nice last night but competence and congeniality are two totally different assets. I think right now we'll stick with the competence.
The nurses this morning really knew their stuff and basically made sound suggestions to the Doctor to alleviate his problems. His surgical dressing and his ostomy bag are now pristine and the drug combination is doing the job. I have closed the blinds and fluffed his pillow and he is totally out. I felt myself take a full deep breath just minutes ago and realized that I have been essentially holding my breath all night long. It is hard to witness suffering.
Today we will sleep and hopefully at some point attempt to get back on our schedule of walking and eating. He can eat anything he wants and is hungry but the pain and the vomiting have stolen his apetite. It is very important for him to take in lots of fluid because his ileostomy execretes much of the liquid that is normally absorbed by the body. Here in the hospital he has IV therapy to compensate for this but at home he will have to do lots of fluid.
We have learned that the hospital stay is a training ground for what must happen at home. It is important to begin forming your recovery regime right from the beginning. The steps are small at first but the important thing is to burn and imprint a daily schedule in your mind. Your body does not always want to cooperate but as you slowly receive positive feedback from the activities it becomes easier and more willing. My job comes at the beginning. I am the Recovery Nazi.
The Recovery Nazi makes you get out of bed, makes you walk further down the hall than you want, offers you drinks every 15 minutes, repeatedly reviews the bad effects associated with getting a blood clot, evaluates the staff to see who are the smart ones, fields calls and tells friends and family not to come visit so you can rest, holds the vomit pan, and repeats over and over to breath slowly in through your nose and out your mouth. Initially I thought Clem was going to punch me a few times but now that he has gone through one major surgery he too understands the importance of the regime.
Most of the time being a Recovery Nazi is just like being a Mom but occasionally it reaches a whole new level a place where I have never been. Last night was certainly one of those times. I wanted so bad to curl up in the bed with him and comfort him but touching him was just out of the question. I just held his hand and punched the morphine pump everytime I felt him grimace. He would nod off for minutes at a time and then wake to tell me how much he loved me and that I should get some rest. Even though I am exhausted and ache everywhere this morning I feel that it was a small price to pay for such meaningful moments.
The longer I live the more that life reveals little surprises. You would think that a diagnosis of cancer would offer only a life of fear and anxiety but instead I have found the true beauty in marriage that we all thought we would instantly receive when we picked out our china patterns and said "I do" as young adults. It is a wonderful gift and it has infused my thoughts with an entirely different outlook. As I held Clem's hand last night I remembered our vows and found comfort in the words..."in sickness and in health".
Life is an unpredictable friend and it has not been that long since I was in the hospital bed and Clem was carrying my catheter bag down the hall. No one prepares you or could even convey to you the intimacy and love associated with those moments. Young people believe that love is the happy ending stories that you see in chick flicks but the truly beautiful side of love sometimes wears a disguise of ugliness.
Last night I was with Clem as he fought through one of the worst nights of his life. Experiences of this nature creates a cement in a relationship that is not easily broken. I do not feel sad. I do not feel cheated by God or life or by cancer. I only feel lucky that in the temporary scheme of things I have been able to recognize and embrace at least some of the meaningful moments when they have passed my way. Do not feel sorry for us we have more than anyone could imagine and our cache of treasures grows larger day after day, night after night, minute by minute. This morning as I lay down to rest my wishes will be for all of you to be as satisfied as I am right now.
The nurses this morning really knew their stuff and basically made sound suggestions to the Doctor to alleviate his problems. His surgical dressing and his ostomy bag are now pristine and the drug combination is doing the job. I have closed the blinds and fluffed his pillow and he is totally out. I felt myself take a full deep breath just minutes ago and realized that I have been essentially holding my breath all night long. It is hard to witness suffering.
Today we will sleep and hopefully at some point attempt to get back on our schedule of walking and eating. He can eat anything he wants and is hungry but the pain and the vomiting have stolen his apetite. It is very important for him to take in lots of fluid because his ileostomy execretes much of the liquid that is normally absorbed by the body. Here in the hospital he has IV therapy to compensate for this but at home he will have to do lots of fluid.
We have learned that the hospital stay is a training ground for what must happen at home. It is important to begin forming your recovery regime right from the beginning. The steps are small at first but the important thing is to burn and imprint a daily schedule in your mind. Your body does not always want to cooperate but as you slowly receive positive feedback from the activities it becomes easier and more willing. My job comes at the beginning. I am the Recovery Nazi.
The Recovery Nazi makes you get out of bed, makes you walk further down the hall than you want, offers you drinks every 15 minutes, repeatedly reviews the bad effects associated with getting a blood clot, evaluates the staff to see who are the smart ones, fields calls and tells friends and family not to come visit so you can rest, holds the vomit pan, and repeats over and over to breath slowly in through your nose and out your mouth. Initially I thought Clem was going to punch me a few times but now that he has gone through one major surgery he too understands the importance of the regime.
Most of the time being a Recovery Nazi is just like being a Mom but occasionally it reaches a whole new level a place where I have never been. Last night was certainly one of those times. I wanted so bad to curl up in the bed with him and comfort him but touching him was just out of the question. I just held his hand and punched the morphine pump everytime I felt him grimace. He would nod off for minutes at a time and then wake to tell me how much he loved me and that I should get some rest. Even though I am exhausted and ache everywhere this morning I feel that it was a small price to pay for such meaningful moments.
The longer I live the more that life reveals little surprises. You would think that a diagnosis of cancer would offer only a life of fear and anxiety but instead I have found the true beauty in marriage that we all thought we would instantly receive when we picked out our china patterns and said "I do" as young adults. It is a wonderful gift and it has infused my thoughts with an entirely different outlook. As I held Clem's hand last night I remembered our vows and found comfort in the words..."in sickness and in health".
Life is an unpredictable friend and it has not been that long since I was in the hospital bed and Clem was carrying my catheter bag down the hall. No one prepares you or could even convey to you the intimacy and love associated with those moments. Young people believe that love is the happy ending stories that you see in chick flicks but the truly beautiful side of love sometimes wears a disguise of ugliness.
Last night I was with Clem as he fought through one of the worst nights of his life. Experiences of this nature creates a cement in a relationship that is not easily broken. I do not feel sad. I do not feel cheated by God or life or by cancer. I only feel lucky that in the temporary scheme of things I have been able to recognize and embrace at least some of the meaningful moments when they have passed my way. Do not feel sorry for us we have more than anyone could imagine and our cache of treasures grows larger day after day, night after night, minute by minute. This morning as I lay down to rest my wishes will be for all of you to be as satisfied as I am right now.
The Calvary
It didn't take much to get the Calvary to come. Our nurse Susan took care of everything. After the third call concerning his surgery dressing and his pain level she mounted the charge herself by calling all the pertinent Doctors for new orders. The epidural was disconnected and a marvelous morphine pump was initiated. Clem was having so much pain that he had begun vomiting so she also shot him full of phenergan. Susan gave Clem about an hour on the pump to get his pain down and then had to change all of his surgical dressings and his ostomy bag because it had leaked everywhere.
It was an awful event. Clem was writhing in pain as all the tape was removed from his tender incision but he held my hand and we hit the morphine pump every eight minutes together. It took her about 45 minutes to complete the procedure and afterwards he was exhausted. He never had this sort of pain with his liver surgery. I suspect today was a series of events that built on each other and started with his epidural becoming ineffective for some reason. When the pain started so did the nausea and when the nausea took over and the vomiting began it intensified the pain until it was out of control.
Right now it is 1 a.m. and we are waiting for the nurse to change his IV bag so the alarm will stop and we may be able to actually sleep some. I am so keyed up right now that I may not be able to rest. I can't believe that the morphine has not put Clem to sleep but he does seem more relaxed now. He has been plagued with the hiccups today and you can imagine how that feels. They have been waking him up in his sleep.
Tonight I will say a prayer of thanks for Susan who geniunely cared about Clem's well being and went the extra mile to make him better. I will also mention the trash man who waited patiently for Clem and I to pass him in the hall and offered Clem a wish of speedy recovery and a heads up on the basketball game tonight on the tele and last but not least for all of you who allow me to vent my frustrations and fears in the early morning hours.
It was an awful event. Clem was writhing in pain as all the tape was removed from his tender incision but he held my hand and we hit the morphine pump every eight minutes together. It took her about 45 minutes to complete the procedure and afterwards he was exhausted. He never had this sort of pain with his liver surgery. I suspect today was a series of events that built on each other and started with his epidural becoming ineffective for some reason. When the pain started so did the nausea and when the nausea took over and the vomiting began it intensified the pain until it was out of control.
Right now it is 1 a.m. and we are waiting for the nurse to change his IV bag so the alarm will stop and we may be able to actually sleep some. I am so keyed up right now that I may not be able to rest. I can't believe that the morphine has not put Clem to sleep but he does seem more relaxed now. He has been plagued with the hiccups today and you can imagine how that feels. They have been waking him up in his sleep.
Tonight I will say a prayer of thanks for Susan who geniunely cared about Clem's well being and went the extra mile to make him better. I will also mention the trash man who waited patiently for Clem and I to pass him in the hall and offered Clem a wish of speedy recovery and a heads up on the basketball game tonight on the tele and last but not least for all of you who allow me to vent my frustrations and fears in the early morning hours.
Wednesday, May 13, 2009
NED
Sorry about my previous rant. It is a coping mechanism that Clem and I refer to as "sick humor". Whenever things get really tough we have a tendancy to cope by making humorous and often sick jokes/stories. Clem has had a tough pain day and along with all the walking down the hall he has had his share of nausea too. It is really hard to watch on the sidelines when all you can do is be encouraging and rearrange his sheets.
Tonight has been especially hard. His GI tract seems to be working again however his epidural is not really cutting the pain. The nurses can't give him oral meds along with the epidural so he is having to just tough it out until the anesthesia dudes show up in the morning. Everyone here has been really helpful and responsive but if he can't find sleep soon I am going to call in the calvary. I can't stand seeing him suffer like this.
The Doctor was very positive this morning about the outcome of the surgery. It appears that Clem is in a state referred to in the medical field as NED which is an acronym for no evidence of disease. During surgery the Doctor searched extensively for other signs of disease and discovered nothing. He does believe however that the pathologists will find cancer in his lymph nodes. It is not a major factor in determining his cure rate it is his liver that will eventually determine his long range survival rate.
Right now NED is good enough for us. Pain free would be a welcome state too. Some days are minute by minute and today has been one of those days.
Tonight has been especially hard. His GI tract seems to be working again however his epidural is not really cutting the pain. The nurses can't give him oral meds along with the epidural so he is having to just tough it out until the anesthesia dudes show up in the morning. Everyone here has been really helpful and responsive but if he can't find sleep soon I am going to call in the calvary. I can't stand seeing him suffer like this.
The Doctor was very positive this morning about the outcome of the surgery. It appears that Clem is in a state referred to in the medical field as NED which is an acronym for no evidence of disease. During surgery the Doctor searched extensively for other signs of disease and discovered nothing. He does believe however that the pathologists will find cancer in his lymph nodes. It is not a major factor in determining his cure rate it is his liver that will eventually determine his long range survival rate.
Right now NED is good enough for us. Pain free would be a welcome state too. Some days are minute by minute and today has been one of those days.
Praise the Lord and pass the ammunition
It is a good thing that yesterday was chill because today was not!! I was right about the nurses not fussing over Clem so much this time. Instead they walked in the door early this morning and told him that getting out of the bed, sitting in the chair, and then subsequently walking down the hall four times today was on the schedule. He had had a good nights sleep and probably had some of yesterday's drugs in him when he pleasantly consented to these tasks.
So around 8:30 this morning we disconnected or rearranged all his tubes and got him to the side of the bed and into the chair. He only made it about five minutes but was willing to give the walking a try about thirty minutes later. He was quite proud of himself and even taunted the other patients in the hall attempting the same exercise. His colon surgery has a high risk of blood clotting so he is receiving daily shots of blood thinner, is wearing circulation stimulating devices on his calves, and is being forced to walk down the hall in order to prevent this complication. So far we have made two of the four walks without fainting or puking but the last little stroll brought on some pretty serious nausea.
Not many things make you feel as bad as being on the very verge of vomiting (VVV) except being visited by a hard core southern Baptist Preacher while fighting off VVV. That is what happened today. It was really quite surreal. We had met him a few times but weren't really sure why he came by to visit except for the possibility that we resembled some sinners he once met. Anyway, he introduced himself and inquired about Clem's condition and of course as everyone has done lately described in detail his and his mother's experience with their colon cancer surgery. She is dead...of course.
I think he could tell by our lack of response to his story that it was time to change the subject so he immediately began to review all the horrible events that had taken place in the last 24 hours in the Chattanooga area. First there was the close encounter with the small child and the child molester in the RV at the Ace Hardware. Second there was the elaborate story of the woman who was almost abducted by the man who had let the air out of her tire in order to trick her into letting him in her car. His briefcase which was later found in her trunk had contained knives, duct tape, and rope which by the way sounds a lot like my purse or the bag in the back of Clem's truck. No one knew about this story and it would not be on the news because the owners of the mall were keeping it hush hush so as not to disrupt shopping. He was passing the story along so that we could all be aware of the horrible crime happening just outside our doors.
Then just when I though he might be getting the YOU ARE ANNOYING THE CRAP OUT OF US SIGNAL from both Clem and myself he goes into his third story which of course was attached to his stay in the hospital with colon cancer. According to Brother Bob there was a patient across the hall from him who refused to get out of bed. After three days the Doctor threatened to fire the male nurse who could not get him to cooperate. The nurse proceeded to be more aggressive with his attempts and the patients replied that he could give 38 reasons for not getting out of the bed. With this statement he reached under his pillow and pulled out his 38 revolver and threatened the nurse. Of course the nurse did not call the Doctor but instead sought the advice of Brother Bob. He quickly suggested that the nurse drug the patient heavily so the two of them could retrieve the gun from his possession. Which is what they did! AMEN HALLELUJAH!!
With that Brother Bob said his exit prayer and left to go spread the good word to others in need of apocalyptic information. Clem and I just sat and looked at each other for a moment after the the door finally swung shut. I was feeling sorry for other patients he might be off to visit who might be in need of a cheerful thought during their recovery. Clem just turned, looked at me solemnly, shook his head, and said PRAISE THE LORD AND PASS THE AMMUNITION!!
You couldn't make this stuff up!
So around 8:30 this morning we disconnected or rearranged all his tubes and got him to the side of the bed and into the chair. He only made it about five minutes but was willing to give the walking a try about thirty minutes later. He was quite proud of himself and even taunted the other patients in the hall attempting the same exercise. His colon surgery has a high risk of blood clotting so he is receiving daily shots of blood thinner, is wearing circulation stimulating devices on his calves, and is being forced to walk down the hall in order to prevent this complication. So far we have made two of the four walks without fainting or puking but the last little stroll brought on some pretty serious nausea.
Not many things make you feel as bad as being on the very verge of vomiting (VVV) except being visited by a hard core southern Baptist Preacher while fighting off VVV. That is what happened today. It was really quite surreal. We had met him a few times but weren't really sure why he came by to visit except for the possibility that we resembled some sinners he once met. Anyway, he introduced himself and inquired about Clem's condition and of course as everyone has done lately described in detail his and his mother's experience with their colon cancer surgery. She is dead...of course.
I think he could tell by our lack of response to his story that it was time to change the subject so he immediately began to review all the horrible events that had taken place in the last 24 hours in the Chattanooga area. First there was the close encounter with the small child and the child molester in the RV at the Ace Hardware. Second there was the elaborate story of the woman who was almost abducted by the man who had let the air out of her tire in order to trick her into letting him in her car. His briefcase which was later found in her trunk had contained knives, duct tape, and rope which by the way sounds a lot like my purse or the bag in the back of Clem's truck. No one knew about this story and it would not be on the news because the owners of the mall were keeping it hush hush so as not to disrupt shopping. He was passing the story along so that we could all be aware of the horrible crime happening just outside our doors.
Then just when I though he might be getting the YOU ARE ANNOYING THE CRAP OUT OF US SIGNAL from both Clem and myself he goes into his third story which of course was attached to his stay in the hospital with colon cancer. According to Brother Bob there was a patient across the hall from him who refused to get out of bed. After three days the Doctor threatened to fire the male nurse who could not get him to cooperate. The nurse proceeded to be more aggressive with his attempts and the patients replied that he could give 38 reasons for not getting out of the bed. With this statement he reached under his pillow and pulled out his 38 revolver and threatened the nurse. Of course the nurse did not call the Doctor but instead sought the advice of Brother Bob. He quickly suggested that the nurse drug the patient heavily so the two of them could retrieve the gun from his possession. Which is what they did! AMEN HALLELUJAH!!
With that Brother Bob said his exit prayer and left to go spread the good word to others in need of apocalyptic information. Clem and I just sat and looked at each other for a moment after the the door finally swung shut. I was feeling sorry for other patients he might be off to visit who might be in need of a cheerful thought during their recovery. Clem just turned, looked at me solemnly, shook his head, and said PRAISE THE LORD AND PASS THE AMMUNITION!!
You couldn't make this stuff up!
Tuesday, May 12, 2009
A good plumber knows how to improvise
I must be getting better at this because today was a pretty chill day. Of course I am not the one who got their insides replumbed. As a matter of fact I sat around reading a book and chatting with my family while Clem underwent a three and a half hour surgery to remove the tumor in his colon. The Surgeon was very positive about both his performance during the operation and his long term outcome. He has a temporary ileostomy to give the section of his colon that was resected a rest during the healing process and in six weeks the Doctor will perform a minor operation to drop it back inside. Surrounding lymph nodes were also removed and sent for biopsy to provide more information concerning the course of his disease.
Right now it is 8:30 p.m. and he is resting quietly in his room on the surgical floor. We have a much improved room from the last time and I am hoping for a good nights sleep for both of us. His operation today was not as invasive as his last so I think the nurses will fuss over him less during the night. Tomorrow will be a big day because he needs to sit up asap and eventually beginning walking. Getting up and moving around prevents blood clots which is a complication that we would like to avoid. The first time out of the bed is really hard though.
There is not much more to say except thank you to all who have called today. I will keep the blog updated while we are here or until Clem feels well enough to make his own posts. I'll let everyone know when he feels like having visitors or calls. Also, if you ever need a good plumber we know where you can find one. We love you.
Right now it is 8:30 p.m. and he is resting quietly in his room on the surgical floor. We have a much improved room from the last time and I am hoping for a good nights sleep for both of us. His operation today was not as invasive as his last so I think the nurses will fuss over him less during the night. Tomorrow will be a big day because he needs to sit up asap and eventually beginning walking. Getting up and moving around prevents blood clots which is a complication that we would like to avoid. The first time out of the bed is really hard though.
There is not much more to say except thank you to all who have called today. I will keep the blog updated while we are here or until Clem feels well enough to make his own posts. I'll let everyone know when he feels like having visitors or calls. Also, if you ever need a good plumber we know where you can find one. We love you.
Wednesday, May 6, 2009
Twelve!
Quickie update: Blood tests yesterday (results today) showed my CEA count to be 12!
CEA is a chemical cancer marker in the blood. When they first measured it, my count was well above 8,000. After the first round of chemo, it went down by half. After surgery, it was down to 200 or so. After radiation, it was at about 41.
Normal is less than 3 for a non-smoker. Not three hundred, but only 3.
That's what we're shooting for after next week's colon resection.
Fingers crossed,
Clem
CEA is a chemical cancer marker in the blood. When they first measured it, my count was well above 8,000. After the first round of chemo, it went down by half. After surgery, it was down to 200 or so. After radiation, it was at about 41.
Normal is less than 3 for a non-smoker. Not three hundred, but only 3.
That's what we're shooting for after next week's colon resection.
Fingers crossed,
Clem
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