Survived the weekend. Had a ham lunch on Sunday, it was one of the spiral, honey, sweet ham's. While the meat was good Terry wanted to make some gravy and the gravy came out like candy, it was not good. However the green beans were tasty and the mashed potatoes OK.
I have started taking Melatonin to help me sleep at night. It seems to work. I wait until about 8 - 9 PM and take two 6 mg tablets and chase with water. With in a little while it is lights out and while I wake to use the bathroom, or wake several time a night just to look around I go back to sleep and usually sleep till Terry wakes. For the most part I feel rested and because it kind of puts me down I don't have to deal with the evil genies.
For some reason today feels like a step backward. I am feeling week, tired and rundown. I can try to lie down but I usually just lay there awake with my mind wandering about my universe. However, I did complete the PT exercises this morning and there have grown a bit more strenuous than last week.
It is still mentally tough, I want progress not a day backward. However when I have had surgical recovery in the past that has been how it has been. I would have a day that I would feel good, pumped up and perhaps over do, then the next day, oof!
Spring is here. The plum, cherries and peach trees have or are blossoming. Terry early flowers have come up and the progression moves along as the other flowers are starting to make their appearance. So I need to concentrate on that with I enjoy and perhaps my mood will lift too.
Monday, April 6, 2015
Friday, April 3, 2015
Here we go again
April 3, day 8 of returning home after major surgery at UAMS in Little Rock, AR. It all started last summer 2014 as my CEA count began to slowly rise. Now this is the second recurrence of a colo-rectal cancer that has been hanging around since 2007.
I started chemo in September of 2014 and it lasted until December of 2014. At first it wasn't too bad, but by the time I got to December I was just a mass of tired, sick human flesh simply was biding his time.
I took six weeks off from chemo to let the body settle down then on January 15, 2015 I went to Little Rock for surgery to remove the now defeated small mass in my pelvic region. It was supposed to be pretty simple surgery, besides it was under the direction of the chief oncological surgeon at the University of Arkansas Medical School. Not so.
When they went to seal the rectum, create the stoma and finish they found a fisstula that was at the based of the pelvic area and was leaking small intestine fluid into my rectal area and then draining out my rectum.
As a result I had an acid burn on my buttocks for five weeks that was excruciating. I was hooked up to a TPM system that fed me through my veins and I never had any food or water for that five week period while they tried to get the fisstula to heal.
The pain was so intense I spent every day either standing up or lying down because I could not stand to sit on anything.
Finally on March 15 we went to Little Rock and I told them I just could not stand it any more, it was more than I could handle and I was entertaining bad thoughts like harming myself.
I was immediately admitted to the hospital, I underwent surgery at 8:30 AM on Tuesday March 16 to remove the fisstula and reroute the ostomy. I awoke to my second recovery and the pain in my buttocks is gone. The ostomy is short and is working well so far and I think corrections were made. But at what expense.
I am traumatized by the surgery, the drugs, the setting, the lack of food. I went in the hospital 250 and came out 204. I am so weak I can barely walk, my stamina is virtually nil, and I feel achy all the time,
However, I have gained four pounds this week, I am walking about the house now albeit I have to stop and rest a lot. I am able to go up and down stairs, but don't yell fire.
I don't sleep well, my mind works overtime stewing over my situation. I am trying some melatonin and even though the Dr. doubts its effectiveness I have found a lot of people who are taking the OTC drug. The best thing to happen is for me to just plod one day at a time and notice the improvements along the way as I usually do, and they are occurring, But right now I am disheartened, feel alone and sick.
I started chemo in September of 2014 and it lasted until December of 2014. At first it wasn't too bad, but by the time I got to December I was just a mass of tired, sick human flesh simply was biding his time.
I took six weeks off from chemo to let the body settle down then on January 15, 2015 I went to Little Rock for surgery to remove the now defeated small mass in my pelvic region. It was supposed to be pretty simple surgery, besides it was under the direction of the chief oncological surgeon at the University of Arkansas Medical School. Not so.
When they went to seal the rectum, create the stoma and finish they found a fisstula that was at the based of the pelvic area and was leaking small intestine fluid into my rectal area and then draining out my rectum.
As a result I had an acid burn on my buttocks for five weeks that was excruciating. I was hooked up to a TPM system that fed me through my veins and I never had any food or water for that five week period while they tried to get the fisstula to heal.
The pain was so intense I spent every day either standing up or lying down because I could not stand to sit on anything.
Finally on March 15 we went to Little Rock and I told them I just could not stand it any more, it was more than I could handle and I was entertaining bad thoughts like harming myself.
I was immediately admitted to the hospital, I underwent surgery at 8:30 AM on Tuesday March 16 to remove the fisstula and reroute the ostomy. I awoke to my second recovery and the pain in my buttocks is gone. The ostomy is short and is working well so far and I think corrections were made. But at what expense.
I am traumatized by the surgery, the drugs, the setting, the lack of food. I went in the hospital 250 and came out 204. I am so weak I can barely walk, my stamina is virtually nil, and I feel achy all the time,
However, I have gained four pounds this week, I am walking about the house now albeit I have to stop and rest a lot. I am able to go up and down stairs, but don't yell fire.
I don't sleep well, my mind works overtime stewing over my situation. I am trying some melatonin and even though the Dr. doubts its effectiveness I have found a lot of people who are taking the OTC drug. The best thing to happen is for me to just plod one day at a time and notice the improvements along the way as I usually do, and they are occurring, But right now I am disheartened, feel alone and sick.
Tuesday, January 13, 2015
Early Start
This evening is the day before, the day before. On Thursday, Jan 15, 2015 I will have my third bowel resection since 2007. In fact it is just a few days past eight years since my first surgery.
I cannot tell you how I hope this is my last. The first surgery was supposed to be uncomplicated, a simple resection and a cure. The Oncologist told me that from the pathology report I was cured, it was as though I'd never had a polyp before.
Initially I encountered frequent bowl movements and I characterized it as going a little a lot. Ten to fifteen times or more a day was not uncommon. There were some days where I didn't go all day, but other days I had accidents and had to clean out my underwear, other days I just had the urge often.
Two years later I started to run into pain, bleeding, and accidents that came without warning. The third year I had a colonoscopy at VA, 2010, and the Dr. said the anastomosis was clear. It wasn't because in April of 2011 after months of treatment for IBS the doctor finally wanted to run another colonoscopy to see what was going on, what was going on was a tumor at the anastomosis that had nearly encircled the bowel. The dumbass at VA missed it.
So in May and June of 2011 I began a regime of concurrent radiation and chemo. It was tough, it was very tough. At the end of June I ended up lying on a bed in a trailer screaming in pain, getting up every fifteen minutes and have diarhhea and then lying back down to get a few minutes rest. After about two weeks the inflammation healed and began to feel good. Then in August 2011 the second resection to remove the burned tumor. All was good.
Around April or May of 2014 my CEA started to rise, and rose until in August it hit 6.2, 3.2 points over normal. A PET scan revealed a hot spot in my pelvic area. A MRI with Contrast reveals a small malignant mass about in the same area as the previous two surgerys.
So I had to indure three months of chemo again which made me feel sick, tired, and fatigued. I ended up spending two months just sitting and enduring.
Thursday I go to a specialist in Little Rock to have the malignancy removed, hopefully. The scans show it very small and not attached to anything like a bone. It outlook is good. My normal surgeon declined to do the surgery because of the risk of a bleed. The surgeon doing the surgery is a specialist in colorectal cancer surgery and well reputed. Hopefully I will survive the surgery and perhaps this time we may get it all. I pray so.
I cannot tell you how I hope this is my last. The first surgery was supposed to be uncomplicated, a simple resection and a cure. The Oncologist told me that from the pathology report I was cured, it was as though I'd never had a polyp before.
Initially I encountered frequent bowl movements and I characterized it as going a little a lot. Ten to fifteen times or more a day was not uncommon. There were some days where I didn't go all day, but other days I had accidents and had to clean out my underwear, other days I just had the urge often.
Two years later I started to run into pain, bleeding, and accidents that came without warning. The third year I had a colonoscopy at VA, 2010, and the Dr. said the anastomosis was clear. It wasn't because in April of 2011 after months of treatment for IBS the doctor finally wanted to run another colonoscopy to see what was going on, what was going on was a tumor at the anastomosis that had nearly encircled the bowel. The dumbass at VA missed it.
So in May and June of 2011 I began a regime of concurrent radiation and chemo. It was tough, it was very tough. At the end of June I ended up lying on a bed in a trailer screaming in pain, getting up every fifteen minutes and have diarhhea and then lying back down to get a few minutes rest. After about two weeks the inflammation healed and began to feel good. Then in August 2011 the second resection to remove the burned tumor. All was good.
Around April or May of 2014 my CEA started to rise, and rose until in August it hit 6.2, 3.2 points over normal. A PET scan revealed a hot spot in my pelvic area. A MRI with Contrast reveals a small malignant mass about in the same area as the previous two surgerys.
So I had to indure three months of chemo again which made me feel sick, tired, and fatigued. I ended up spending two months just sitting and enduring.
Thursday I go to a specialist in Little Rock to have the malignancy removed, hopefully. The scans show it very small and not attached to anything like a bone. It outlook is good. My normal surgeon declined to do the surgery because of the risk of a bleed. The surgeon doing the surgery is a specialist in colorectal cancer surgery and well reputed. Hopefully I will survive the surgery and perhaps this time we may get it all. I pray so.
Wednesday, November 26, 2014
Done with Chemo
I am done with chemo for the time being. I have already discussed with the oncologist that I will have some follow up chemo after surgery, but last time I had it the effect was pretty mild.
I have had six rounds of chemo, every two weeks, so three months of feeling off, fatigued, lethargic and having a mildly upset stomach will be done. I have to be off chemo for six weeks before I can have surgery. I have an appointment with the specialist in Little Rock on December 15, 2014 and I will sign a consent form then that is good for 30 days. That means that surgery will take place after the first of the year and must be before the 15th.
I'll look forward to feeling well for the 2014 Christmas.
I have had six rounds of chemo, every two weeks, so three months of feeling off, fatigued, lethargic and having a mildly upset stomach will be done. I have to be off chemo for six weeks before I can have surgery. I have an appointment with the specialist in Little Rock on December 15, 2014 and I will sign a consent form then that is good for 30 days. That means that surgery will take place after the first of the year and must be before the 15th.
I'll look forward to feeling well for the 2014 Christmas.
Monday, November 24, 2014
Chemo: Round Six
I am becoming an old hand at this. The oncologist and I had a discussion because I want to end the chemo, he argue for it as we had agreed to six rounds, and I have completed five. In addition I realized this is a short week and I won't get in to see the specialist this week, however the week after Thanksgiving would be fine. It would also be the second week after chemo and later in the week I start to recover. So I went for Round 6.
However, there is a drug they give that helps with anti-nausea and is a strong steroid. The effect is I feel good for about three days. Thursday, Day 4 is when the effect wears off and I feel very tired, little stamina and my stomach is mildly upset, this lasts for about a week, then slowly lifts.
So tonight I am up late as I cannot go to sleep. The drug makes me feel good, I am hungry and have enjoyed half a left over Turkey sandwich from our early Thanksgiving bird, and may even enjoy a second. My mind is alert and I simply do not feel tired. I lay on the bed and listened to a number of Leon Redbone tracks then read his biography on Wikipedia. I read the news, looked up Monday night football and checked the weather. I turned the light out, rolled over and was wide awake. I'm downstairs at the computer taking advantage of the energy.
That is what my chemo is like, and has been through all 5 rounds. However, the Dr. did lower the dosage by 15% on the two remaining drugs I take so hopefully the side effects won't be as severe this time, nor last as long.
However, there is a drug they give that helps with anti-nausea and is a strong steroid. The effect is I feel good for about three days. Thursday, Day 4 is when the effect wears off and I feel very tired, little stamina and my stomach is mildly upset, this lasts for about a week, then slowly lifts.
So tonight I am up late as I cannot go to sleep. The drug makes me feel good, I am hungry and have enjoyed half a left over Turkey sandwich from our early Thanksgiving bird, and may even enjoy a second. My mind is alert and I simply do not feel tired. I lay on the bed and listened to a number of Leon Redbone tracks then read his biography on Wikipedia. I read the news, looked up Monday night football and checked the weather. I turned the light out, rolled over and was wide awake. I'm downstairs at the computer taking advantage of the energy.
That is what my chemo is like, and has been through all 5 rounds. However, the Dr. did lower the dosage by 15% on the two remaining drugs I take so hopefully the side effects won't be as severe this time, nor last as long.
Thursday, November 13, 2014
Observations from my hospital stay
I have already written about the large bowel partial blockage I experienced in late October. I hope no one has to go through that. This short blog concerns the care I received while under the care of the hospital.
The hospital just opened in November 2013. It represents over $500,000,000 investment in our area and is a state of art hospital when it comes to technology. The hospital also recently received some accredation that puts in on the same footing as MD Anderson and Mayo's for level of care. It is a gem.
I went in through ER and did not experience the painful slow intake process usually associated with the ER. Within less than half and hour I had been triaged, had an x-ray that determined I had a partial lower bowel blockage and waited on transport to a regular room
Within a half an hour I was in a room and nurses were attending to me. Several times during the admission to the hospital the "hospitalist" came in and check. Now I was have violent cramps and pain all this time but no pain meds were prescribed until a Dr. had determined the final diagnosis and settled on a course of treatment. That is frustrating and kind of scary, but I can understand how necessary it is. I've been through that several times before.
The next 6 days were spent in pain, uncontrolable bowel movements, and boredom. The nurses were efficient, compassionate, and very efficient. I was truly impressed at their work ethic and care they exhibited for their patient. Everyone was part of the team and pitched in to perform whatever task was needed to be performed, from cleaning up the messes I made to administering medications. Nothing was too low or to unimportant.
I met a Dr. in the hospital who had been a general surgeon but didn't make the change with new surgery procedures and became a hospitalist. He was straightforward and honest and I appreciated it. He gave me advice and told me things that perhaps a Dr. wouldn't. I did appreciate the input.
All in all the experience, under the circumstances, was good. Just wish I didn't have to go back, but this one will be at the University of Arkansas School of Medicine in Little Rock so we shall see what comes of that.
The hospital just opened in November 2013. It represents over $500,000,000 investment in our area and is a state of art hospital when it comes to technology. The hospital also recently received some accredation that puts in on the same footing as MD Anderson and Mayo's for level of care. It is a gem.
I went in through ER and did not experience the painful slow intake process usually associated with the ER. Within less than half and hour I had been triaged, had an x-ray that determined I had a partial lower bowel blockage and waited on transport to a regular room
Within a half an hour I was in a room and nurses were attending to me. Several times during the admission to the hospital the "hospitalist" came in and check. Now I was have violent cramps and pain all this time but no pain meds were prescribed until a Dr. had determined the final diagnosis and settled on a course of treatment. That is frustrating and kind of scary, but I can understand how necessary it is. I've been through that several times before.
The next 6 days were spent in pain, uncontrolable bowel movements, and boredom. The nurses were efficient, compassionate, and very efficient. I was truly impressed at their work ethic and care they exhibited for their patient. Everyone was part of the team and pitched in to perform whatever task was needed to be performed, from cleaning up the messes I made to administering medications. Nothing was too low or to unimportant.
I met a Dr. in the hospital who had been a general surgeon but didn't make the change with new surgery procedures and became a hospitalist. He was straightforward and honest and I appreciated it. He gave me advice and told me things that perhaps a Dr. wouldn't. I did appreciate the input.
All in all the experience, under the circumstances, was good. Just wish I didn't have to go back, but this one will be at the University of Arkansas School of Medicine in Little Rock so we shall see what comes of that.
Wednesday, November 12, 2014
Partial Lower Bowel Obstruction
I had my 4th Round of Chemo on October 20th. I enjoyed my usual two to three days of feeling good from one of the pre-meds they give me prior to chemo. However about Thursday I started having trouble going to the bath room and starting have fairly intense cramps. This worsened throughout the weekend until my belly was distended and I was encountering quite severe pain. I had no appetite and really did not eat much at all. I did try to eat and forced myself, but the minute food touch my stomach I would start these intense, hard cramps.
Finally Tuesday, Oct 28 I told my wife I couldn't take it any more and we needed to go to the ER. I was admitted that morning with a partial lower bowel obstruction. While I was relieved that an NG tube would not be of much help, I then learned the treatment is no food or water, nothing until it worked its way out. I went four days with nothing to eat or nothing to drink. One of the drugs in my chemo regime is Oxyplatin, which causes and intense reaction to cold. So even when I was able to suck on the ice chips I couldn't. I could not stand the reaction to cold.
I started to pass gas along about Thursday, heavy rumbling sounds that were almost as painful as relief. Finally Saturday, Nov. 1 I was put on a clear liquid diet. This meant juice, broth, water, etc. However my taste was all balled up and not much tasted good so I was getting much of my fluids through an IV.
In the meantime on Friday a x-ray revealed a pneumonia. That started an intense round of anti-biotics. Now my bowels have very little going on because of the blockage and then they come along with Round-Up and kill all the bacteria.
My stool looks like sludge, it is uncontrollable and comes frequently. Nurses are having to change my bed several times a shift, I am soiling myself several times and hour and wearing these hospital briefs to contain the output. Its a hell of a mess. I am not feeling any better and my wife is helping as much as she can, which is a lot.
By now, after four days we've established a good repartee with the staff and nurses. I don't know how they can work in the situation I offered them but they seem very professional and take it like just part of what goes on. In the meantime my modesty and embarrassment have fled like a fart in a windstorm.
I start feeling a little better on Saturday evening and Sunday but still I go and go. A Dr. comes in and says he believed if I kept pooping and passing gas and eating I could go home Monday. By Sunday it seemed like I was having a reversal, not in the blockage, but I just started to feel worse and worse.
Monday comes and the Dr.'s nurse comes in to check up and I tell her about feeling worse. She says it is a well known fact that if you stay in a hospital too long it will make you sick. Long story short, I was released on Monday and went home. I felt sick and weak and tired. However, I am getting better, In fact, I'd say I feel about as good as I have in a month. You see chemo colors all. I have know sense of blockage, but chemo just makes you tired, worn out and lethargic. That is where I'm at now having spent six days in the hospital and 8 days out. I'd call that about normal.
Next week a couple of tests, a PET Scan and an MRI with Contrast, then an evaluation of the situation by the Dr. in Little Rock and hopefully surgery in Mid-December. At least that is my hope, we shall see what the outcome will be.
Finally Tuesday, Oct 28 I told my wife I couldn't take it any more and we needed to go to the ER. I was admitted that morning with a partial lower bowel obstruction. While I was relieved that an NG tube would not be of much help, I then learned the treatment is no food or water, nothing until it worked its way out. I went four days with nothing to eat or nothing to drink. One of the drugs in my chemo regime is Oxyplatin, which causes and intense reaction to cold. So even when I was able to suck on the ice chips I couldn't. I could not stand the reaction to cold.
I started to pass gas along about Thursday, heavy rumbling sounds that were almost as painful as relief. Finally Saturday, Nov. 1 I was put on a clear liquid diet. This meant juice, broth, water, etc. However my taste was all balled up and not much tasted good so I was getting much of my fluids through an IV.
In the meantime on Friday a x-ray revealed a pneumonia. That started an intense round of anti-biotics. Now my bowels have very little going on because of the blockage and then they come along with Round-Up and kill all the bacteria.
My stool looks like sludge, it is uncontrollable and comes frequently. Nurses are having to change my bed several times a shift, I am soiling myself several times and hour and wearing these hospital briefs to contain the output. Its a hell of a mess. I am not feeling any better and my wife is helping as much as she can, which is a lot.
By now, after four days we've established a good repartee with the staff and nurses. I don't know how they can work in the situation I offered them but they seem very professional and take it like just part of what goes on. In the meantime my modesty and embarrassment have fled like a fart in a windstorm.
I start feeling a little better on Saturday evening and Sunday but still I go and go. A Dr. comes in and says he believed if I kept pooping and passing gas and eating I could go home Monday. By Sunday it seemed like I was having a reversal, not in the blockage, but I just started to feel worse and worse.
Monday comes and the Dr.'s nurse comes in to check up and I tell her about feeling worse. She says it is a well known fact that if you stay in a hospital too long it will make you sick. Long story short, I was released on Monday and went home. I felt sick and weak and tired. However, I am getting better, In fact, I'd say I feel about as good as I have in a month. You see chemo colors all. I have know sense of blockage, but chemo just makes you tired, worn out and lethargic. That is where I'm at now having spent six days in the hospital and 8 days out. I'd call that about normal.
Next week a couple of tests, a PET Scan and an MRI with Contrast, then an evaluation of the situation by the Dr. in Little Rock and hopefully surgery in Mid-December. At least that is my hope, we shall see what the outcome will be.
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