This entry's title comes from the Harry Potter series of books. It's the spell used to make things lift up and hover in the air. On Tuesday I learned that there are other spells that are equally effective at that "magic" trick.
When they do a big operation on you, they install a drain to keep your insides from filling up with fluids. I had one with my liver, so I wasn't surprised to see one when I woke up from my colon surgery. It's a little rubber bulb with a long rubber hose on it, maybe 3/8" or 9mm in diameter, that sticks inside you through a hole. From time to time through the day it fills up with liquid (some blood at first, then just liquid stuff) and has to be emptied. It's kind of annoying, but no big deal while you're in the hospital.
By this week, however, it wasn't draining much any more and I was definitely ready to have the nasty thing out and gone. A quick phone call later and the nurse was waiting for me at the hospital. Last time, when they pulled it out, I had no idea what to expect. It turned out to be nothing too bad at all. Kind of strange, as there seemed to be about three feet of hose in there, but it didn't exactly hurt or anything as they yanked and tugged.
So I was sitting there on the table, calm and with a good understanding about the whole procedure, happy to demonstrate my unflappable cool to the nurse as she pulled the first foot or so out. I must have missed her incantation (wingardium leviosa!) but I sure felt myself lift up off the table! Pam said I screamed something unprintable and hovered about one foot in the air, with a death grip on the nurse's hand and hose. YEOW! The hose had snagged on something in there and it HURT LIKE HELL. After all that I've been through, pain hasn't really been a problem for me until that second. I was breathing like I'd run a marathon, sweating heavily, and not at all eager to continue. The nurse, bless her heart, was as calm as could be, patiently watching her hand being crushed and me levitating there.
Pam suggested that I lie back, but the nurse and I realized that I wouldn't be lying back for long once she jerked that hose again. For the second pull, I braced (mentally taking a big slug of whiskey and putting a big leather strap between my teeth like they do in the Western movies) and gave the nod.
What came out was not merely a plain hose, but about another foot or so of hose with a huge plastic thing on the end of it! Pam said it looked like a brush. I thought it was like a little flat strip with a long hole in it for fluid collection. My insides told me it was one of the longline fishing tackles they use for catching sharks in the ocean, bristling with hooks and maybe a shark or two thrashing there as well.
Once it was out it was done, so I floated back down to the table and sat there breathing for a while. The nurse disposed of the hated thing with quick efficiency and smiled as she restored circulation to her hand. It took me an hour or so to come back from the adrenaline dump. Pam sped the process considerably by taking me by the Sonic for a little ice cream on the way home.
I've been laughing at myself ever since, to think that I was screaming like a little girl at the least of the medical procedures I've endured over the past year. It just goes to show, you can't relax for a minute around here. Mad-Eye Moody said it best: "Constant vigilance!"
Thursday, May 28, 2009
Tuesday, May 26, 2009
Men say the nicest things
I am sensing a lack of communication. Thanks for the nice comments...ummmm I think.
Monday, May 25, 2009
Prevention--an ounce is worth a pound of cure
Clem here. (With selected Pam edits)
Today we had a long talk with my oncologist, the primary doctor who's responsible for everything cancer-related. He's the one who resolved to cure me back when the rest of the team of doctors doubted whether I would even be treatable. The big news of the day: I'm cured!
In the foot-and-a-half of colon that they removed they found a few microscopic cancer cells, and in 3 of the 27 lymph nodes that came with it they found a few more microscopic foci. (There's a word-of-the-day for you!) We should have new CEA marker news in the morning, but we expect it to be normal--below 5. (Personally, I'm shooting for less than three.) Clear margins were achieved everywhere. The surgery was an unqualified success--another huge hurdle cleared for me.
The oncologist goes with the numbers, doing what has statistically been shown to be the most efficacious plan of treatment for similar cases to mine. The numbers call for 12 doses of chemotherapy to maximize the effectiveness of the treatment. So far, I've had 5 of them. Since today's cancer counts were non-zero, perhaps there is still an odd cell or two wandering around looking for a nice, juicy liver to set up shop in again. Further, since it's been proven that these cells are responsive to the treatments we've done so far, it makes sense to continue the chemo for the full term--another 7 sessions.
On the one hand, I'm sure not looking forward to a summer of chemo. On the other, it really didn't bother me all that much, and we have an opportunity to "kick it while it's down" and really put any stray cancer cells out of their misery. So, starting on Monday, I'll be back to my "week on/week off" chemo regimen. I'll do it through June, July, and August. In the midst of that somewhere I'll have the ileostomy reversed (or possibly just wait until the end and have the portacath taken out at the same time.)
With that, all the big stumbling blocks are out of the way and I'm set to walk away from this thing "free and clear." Though it has taken a year, and not been fun by any means, there have been many good things to come from this experience. My bond with my fantastic wife is more solid than I could have ever imagined one could be. There were times, before, when Ithought that I felt was out of mind mind and felt ready to walk away from her. There were other times when I chose to trust her, even when I knew somehow got deluded into the crazy notion that she was doing something hurtful to me or wrong or mean. that only an idiot could have interpreted as--barely possibly--slightly insulting or some kind of silly, misunderstood thing like that. She has repaid that trust a thousand times over and humbled me in the process. Love is not easy, but it is worth every challenge when it's with the right person. She's the one.
Thanks for listening. You have all helped me to make it through these trials, and I appreciate your caring more than I can convey with these few words. We'll keep the news fresh as it happens over the next few months, through these last few small steps.
Clem
Today we had a long talk with my oncologist, the primary doctor who's responsible for everything cancer-related. He's the one who resolved to cure me back when the rest of the team of doctors doubted whether I would even be treatable. The big news of the day: I'm cured!
In the foot-and-a-half of colon that they removed they found a few microscopic cancer cells, and in 3 of the 27 lymph nodes that came with it they found a few more microscopic foci. (There's a word-of-the-day for you!) We should have new CEA marker news in the morning, but we expect it to be normal--below 5. (Personally, I'm shooting for less than three.) Clear margins were achieved everywhere. The surgery was an unqualified success--another huge hurdle cleared for me.
The oncologist goes with the numbers, doing what has statistically been shown to be the most efficacious plan of treatment for similar cases to mine. The numbers call for 12 doses of chemotherapy to maximize the effectiveness of the treatment. So far, I've had 5 of them. Since today's cancer counts were non-zero, perhaps there is still an odd cell or two wandering around looking for a nice, juicy liver to set up shop in again. Further, since it's been proven that these cells are responsive to the treatments we've done so far, it makes sense to continue the chemo for the full term--another 7 sessions.
On the one hand, I'm sure not looking forward to a summer of chemo. On the other, it really didn't bother me all that much, and we have an opportunity to "kick it while it's down" and really put any stray cancer cells out of their misery. So, starting on Monday, I'll be back to my "week on/week off" chemo regimen. I'll do it through June, July, and August. In the midst of that somewhere I'll have the ileostomy reversed (or possibly just wait until the end and have the portacath taken out at the same time.)
With that, all the big stumbling blocks are out of the way and I'm set to walk away from this thing "free and clear." Though it has taken a year, and not been fun by any means, there have been many good things to come from this experience. My bond with my fantastic wife is more solid than I could have ever imagined one could be. There were times, before, when I
Thanks for listening. You have all helped me to make it through these trials, and I appreciate your caring more than I can convey with these few words. We'll keep the news fresh as it happens over the next few months, through these last few small steps.
Clem
Friday, May 22, 2009
The sounds and smells of home
I woke this morning to the sounds of my grandson babbling and the birds singing. I had a brief thought that I would sneek out of bed and let Clem rest more when I realized I was the only one in the bed. Clem had been up twice. Once to nibble some breakfast and another time after crawling back into bed with me and sleeping more. I don't remember any of it. Like many women I need sleep more sleep than Clem requires. I think it is because he can dive down into the restful part of right from the start. I don't reach that point until about 3 a.m.
I can tell that Clem's attitude has changed dramatically today. The hard part is over and now the lazy days of recovery begin. We both had begun to feel like our brains were drying up the last few days in the hospital. It is good to be home!
I can tell that Clem's attitude has changed dramatically today. The hard part is over and now the lazy days of recovery begin. We both had begun to feel like our brains were drying up the last few days in the hospital. It is good to be home!
Thursday, May 21, 2009
Home is where my heart is and my bed and my garden and my stuff and my own toliet and I can walk around naked if I want to
We made it home! Clem walked down the hall, rode the elevator carrying his backpack, and walked out of the hospital!! He is tired tonight but feeling like a real person again. No more tubes, iv's, or injections in the middle of the night. he has bruise all over his tiny little fanny from the heparin injections, a big hole in his arm from the PICC line, an even bigger hole in his belly where his ostomy is located, and last but not least the infamous grenade drain came home with him. We were hoping that the Doctor would take this out. He even teased us with the thought but it is still draining "stuff" from his abdomen so I guess it is for the best.
He is thrilled to have clothes on. He started to score some of those sexy hospital gowns just for lounging around the house but sometimes a good thing can be beat to death. I think we'll just save those for special occasions.
We are lying here in the bed smelling the fresh air of the country and watching the lightning bugs spark outside our bedroom window. It looks like a jungle here everything has grown so tall since we have been gone. Tomorrow I get to pull weeds!! Yeah!!!! Dirt! Clem will probably just piddle. Resting when he needs to and motivating around the yard and the house. I think he is up for visitors if you want to stop by. We'll be here but I can't guarantee that he will be awake.
I want to thank everyone who has been following Clem's progress and let you know how much it means to both of us. Your comments encourage us and help us to know that we are not alone. Today we got a comment from Ann who is also going through the same type of treatment. I am sure that Clem would love to meet you and talk or correspond by email. Contact me (Pam) at akins.pamela@yahoo.com and I will hook you two guys up. I am assuming that you live in or around Huntsville and we are frequently there. I hope that something on the blog has been beneficial to you even if it is just to read about someone who is going through the same thing.
He is thrilled to have clothes on. He started to score some of those sexy hospital gowns just for lounging around the house but sometimes a good thing can be beat to death. I think we'll just save those for special occasions.
We are lying here in the bed smelling the fresh air of the country and watching the lightning bugs spark outside our bedroom window. It looks like a jungle here everything has grown so tall since we have been gone. Tomorrow I get to pull weeds!! Yeah!!!! Dirt! Clem will probably just piddle. Resting when he needs to and motivating around the yard and the house. I think he is up for visitors if you want to stop by. We'll be here but I can't guarantee that he will be awake.
I want to thank everyone who has been following Clem's progress and let you know how much it means to both of us. Your comments encourage us and help us to know that we are not alone. Today we got a comment from Ann who is also going through the same type of treatment. I am sure that Clem would love to meet you and talk or correspond by email. Contact me (Pam) at akins.pamela@yahoo.com and I will hook you two guys up. I am assuming that you live in or around Huntsville and we are frequently there. I hope that something on the blog has been beneficial to you even if it is just to read about someone who is going through the same thing.
Sleeping in our own bed tonight!!!!
The Doctor came in this morning and gave us our release!!!! We have to wait until after dinner so we are sure that he is not going to digress but that is not going to happen. Dr. Stanley warned Clem about becoming dehydrated at home and all the dangers that go along with it. He is also still at risk for blood clots so walking frequently is a must. He has been receiving daily heparin shots here in the hospital that will end with our stay. The good news is Clem's platelet count is 133,000 today which is the highest it has been in months. The bad news is that puts him at higher risk for clotting.
His electrolytes are also a concern because of the way his plumbing is connected so the Doctor wants him to drink at least three Gatorade drinks a day. OMG of all the things he is having to deal with now this pisses him off the most. He does not like gatorade or powerade or vitamin water or anything else but his favorite which is weak tea. There are lots of good things about type A people but change is not one of their better skill levels. Once he finds something that works for him Clem will continue with the course of action for years and years and years until something new and definitely better PROVES itself to him. I can already see that the Nazi is going to have to deal with this issue.
Walking and hydration is our new plan but for today a little more rest and a lot of packing. I hope to have all of our things in the car by the time we are released today so our exit is swift and easy. I may even run by the house and pick up something nice for Clem to wear out of the hospital. I want him to feel proud of himself today as he leaves.
His electrolytes are also a concern because of the way his plumbing is connected so the Doctor wants him to drink at least three Gatorade drinks a day. OMG of all the things he is having to deal with now this pisses him off the most. He does not like gatorade or powerade or vitamin water or anything else but his favorite which is weak tea. There are lots of good things about type A people but change is not one of their better skill levels. Once he finds something that works for him Clem will continue with the course of action for years and years and years until something new and definitely better PROVES itself to him. I can already see that the Nazi is going to have to deal with this issue.
Walking and hydration is our new plan but for today a little more rest and a lot of packing. I hope to have all of our things in the car by the time we are released today so our exit is swift and easy. I may even run by the house and pick up something nice for Clem to wear out of the hospital. I want him to feel proud of himself today as he leaves.
Wednesday, May 20, 2009
Show me the way to go home
I've been having a recurring dream all my life. This week I have had it over and over. It goes something like this: I am in college again and it is finals day. I am unprepared for the test and trying to get to the classroom to cram a little before hand. Suddenly I forget how to get to the classroom and I search and search lost in areas that I recognize but never being able to find my way.
We have had such crazy sleep patterns this week that it feels like I have had this dream three or more times in a night. I decided to look for an interpretation of the dream online. I discovered that dreams of this nature are common and may be recurrant throughout someones lifetime. It is universally agreed upon that these dreams are indicative of feelings of vulnerability and feeling out of place. Well, there you have it! It is time to go home!@!
Clem is ready and so am I. I am hoping that the Doctor will dismiss us in the morning and that we will not have to stay another day in order to complete his nutrition therapy. A specialized team has to remove his PICC line and it took more than 24 hours to get it inserted.
The room changed atmosphere over the course of the day. As Clem improved more and more the room seemed more and more claustrophobic. We miss our house and especially our own bed. We stepped outside a few times today just to get some fresh air and I think it just made us a little more homesick. It was easy to be here when he needed therapy but now he is ready and we are getting anxious to leave.
Hopefully my next post will detail our plans of going home tomorrow.
We have had such crazy sleep patterns this week that it feels like I have had this dream three or more times in a night. I decided to look for an interpretation of the dream online. I discovered that dreams of this nature are common and may be recurrant throughout someones lifetime. It is universally agreed upon that these dreams are indicative of feelings of vulnerability and feeling out of place. Well, there you have it! It is time to go home!@!
Clem is ready and so am I. I am hoping that the Doctor will dismiss us in the morning and that we will not have to stay another day in order to complete his nutrition therapy. A specialized team has to remove his PICC line and it took more than 24 hours to get it inserted.
The room changed atmosphere over the course of the day. As Clem improved more and more the room seemed more and more claustrophobic. We miss our house and especially our own bed. We stepped outside a few times today just to get some fresh air and I think it just made us a little more homesick. It was easy to be here when he needed therapy but now he is ready and we are getting anxious to leave.
Hopefully my next post will detail our plans of going home tomorrow.
Around the Corner
2:15 Looks like we turned a corner. The Doctor put Clem back on solid food today and he has had two meals with excellent results. I think the Doctor will consider sending us home tomorrow if all goes well today. He is walking well, getting up and down on his own, and today we took an actual shower. He is using no pain medication and would be sleeping well at night if we could keep everyone out of the room.
We have been asleep for the last few hours trying to catch up from last night. We were up at 4:00 and then every hour on the hour until around 9:00. Jessica and Adley stopped by with some supplies and a visit then around noon we just crashed after the shower.
It appears to be a beautiful day here today and we anxious to be outside again. Right now I am fantasizing about sitting on our front porch in the hammock. Maybe tomorrow.
We have been asleep for the last few hours trying to catch up from last night. We were up at 4:00 and then every hour on the hour until around 9:00. Jessica and Adley stopped by with some supplies and a visit then around noon we just crashed after the shower.
It appears to be a beautiful day here today and we anxious to be outside again. Right now I am fantasizing about sitting on our front porch in the hammock. Maybe tomorrow.
Tuesday, May 19, 2009
Update
10:15 The tpn has been started and he is tolerating it well. Had a nice visit with Mike and Nancy Harrison who came just when Clem was feeling better. It was great to have laughter in the room again.
The nutrition runs 24 hours and is switched out every night at 9 p.m. I think by tomorrow he should be back to his old self.
The nutrition runs 24 hours and is switched out every night at 9 p.m. I think by tomorrow he should be back to his old self.
A little bit of progress
8:00 p.m. Looks like a new man sitting in the chair munching tentatively on some pita chips. He woke from a four hour nap, finished four bags of IV fluids today, and his stomach feels like it might be emptying. I think the Doctor was right. Clem was overdosed on imodium.
After this type of surgery the Doctor attempts to regulate the balance of in and out. The use of Imodium is pretty standard in that treatment. Obviously Clem needs a less aggressive dosage. The tpn treatment is still going to happen for a day or two because as my posts have shown a little progress can turn around fast either way. We both have a good feeling that we are on the right track now though and are again hopeful that we might make it home in a few more days.
After this type of surgery the Doctor attempts to regulate the balance of in and out. The use of Imodium is pretty standard in that treatment. Obviously Clem needs a less aggressive dosage. The tpn treatment is still going to happen for a day or two because as my posts have shown a little progress can turn around fast either way. We both have a good feeling that we are on the right track now though and are again hopeful that we might make it home in a few more days.
Waiting for the feast to begin
5:15 p.m. Clem has crashed. It has been another long day without nurishment. He has had a huge volume of fluids from his IV but only sips by mouth. He is so weak right now. The PICC line was easily and quickly inserted around 2:00 p.m. and I was pretty frustrated with their response until I learned that the nutrition therapy will not begin until tonight at 9 p.m. I'm not sure why this is the case but all the tpn starts at the same time each night with each patient. ???
After that news we just hunkered down and attempted to rest until that time came. He has not vomited today but he has been suffering with the full belly discomfort. He said earlier that he thought that some thing might actually be making it down the pipes now but he was unsure as this is a first for his body to experience.
He looks so thin in his face right now and it breaks my heart to see him go through this even though if you ask him he describes it as not being so bad. I think this is the toughest thing he has gone through so far even the liver surgery.
He is off all meds. No pain drugs, no nausea drugs, no imodium, nothing. He does however have tubes running rampant out of and into his body. I know it has just been a week but he looks like he is starving right now. I can tell such a difference in his body from a week ago even his beautiful muscular legs have atrophied.
On a different note I know how fast this man can turn things around and before I know it he'll be hanging off of something tall and I will be trying to catch up.
After that news we just hunkered down and attempted to rest until that time came. He has not vomited today but he has been suffering with the full belly discomfort. He said earlier that he thought that some thing might actually be making it down the pipes now but he was unsure as this is a first for his body to experience.
He looks so thin in his face right now and it breaks my heart to see him go through this even though if you ask him he describes it as not being so bad. I think this is the toughest thing he has gone through so far even the liver surgery.
He is off all meds. No pain drugs, no nausea drugs, no imodium, nothing. He does however have tubes running rampant out of and into his body. I know it has just been a week but he looks like he is starving right now. I can tell such a difference in his body from a week ago even his beautiful muscular legs have atrophied.
On a different note I know how fast this man can turn things around and before I know it he'll be hanging off of something tall and I will be trying to catch up.
Plan B
11:30 a.m. Long night long morning. Clem woke very early looking haggard and uncomfortable. Not so much pain anymore just hurting from being in the bed and incapable of getting a satisfying position and just too damn tired to walk down the hall right now. We had the x-rays this morning which did not reveal anything alarming or significant so the Doctor is going to wait and see what happens over the next few days. He suspects that the combination of the high doses of Imodium and the tylenol #3 may have stopped his small intestines from functioning. So all of that is being held, his IV fluids have been pumped up to 500ml per hour, and he is going on the tpn nutition program to keep him from starving over the next 2 or 3 day waiting period. The Doctor is confident that this will resolve itself without more surgery.
In the meantime Clem and I are patiently waiting in our room for the PICC line team. They are a specially trained group of nurses who do this daily and apparently they are very busy because the order has been in place for what seems like a long time. I have yet to be a bitch to anyone yet mostly because it really hasn't been necessary. Everyone responds here so positively but we are both exhausted and Clem literally looks emaciated today and he needs nutrition!! So my patience are beginning to wear thin. Fortunately Clem is catching up on the sleep that he missed out on last night. He asked me to crawl into bed with him for the first time this morning so that he could sleep better and we both crashed for a few hours in what was a blissful rest for me. I am only up now because I wanted to let all his family know what was happening and that progress is slowly being made. He is taking in a few clear liquids by mouth now but he is very guarded about the quantities.
It looks like a beautiful day outside. Hopefully by the end of the day Clem will be feeling much better and we will be out walking again. I scoped out a new place for us to walk last night. A covered bridge that leads from the hospital to the adjacent medical building is like being outside but has the benefit of hand rails and a smooth surface so we can roll our new best friend the IV pump and pole. I suggested this morning that we put a hat on top of the pole and and drape a hospital gown around the pump for a more human look. Yes, I am bored. If I ha a needle and thread up here I would have these curtains down and entirely new costume made for the thing.
I'll update again after the PICC line team comes and goes.
In the meantime Clem and I are patiently waiting in our room for the PICC line team. They are a specially trained group of nurses who do this daily and apparently they are very busy because the order has been in place for what seems like a long time. I have yet to be a bitch to anyone yet mostly because it really hasn't been necessary. Everyone responds here so positively but we are both exhausted and Clem literally looks emaciated today and he needs nutrition!! So my patience are beginning to wear thin. Fortunately Clem is catching up on the sleep that he missed out on last night. He asked me to crawl into bed with him for the first time this morning so that he could sleep better and we both crashed for a few hours in what was a blissful rest for me. I am only up now because I wanted to let all his family know what was happening and that progress is slowly being made. He is taking in a few clear liquids by mouth now but he is very guarded about the quantities.
It looks like a beautiful day outside. Hopefully by the end of the day Clem will be feeling much better and we will be out walking again. I scoped out a new place for us to walk last night. A covered bridge that leads from the hospital to the adjacent medical building is like being outside but has the benefit of hand rails and a smooth surface so we can roll our new best friend the IV pump and pole. I suggested this morning that we put a hat on top of the pole and and drape a hospital gown around the pump for a more human look. Yes, I am bored. If I ha a needle and thread up here I would have these curtains down and entirely new costume made for the thing.
I'll update again after the PICC line team comes and goes.
Monday, May 18, 2009
Another step back
7:30 p.m. It looked pretty good there for a while and then Clem started violently vomiting again! Not just a small amount but an entire days worth of fluid intake. 2250ml to be exact. We both decided it was time to call the Doctor and discuss the possibility of an occlusion and he agreed that all was not well.
The new plan. In the morning Clem gets a PICC line and will be started on TPN therapy which I believe stands for total patient nutrition. He basically has not held anything down since last Tuesday. His IV fluids will be running in this line as well. He has been switched back to clear liquid fluids and tomorrow he will be getting x-rays of his abdomen to see if anything noticable reveals itself.
What are the possibilities? A kink or some type of occlusion in his small intestine or his intestines are just slow in coming back to life. Most of these complications work themselves out within a few days but it is possible that the surgeon will have to go back in and straighten something out. For now we wait.
As long as Clem does not take anything in by mouth he does not experience nausea or much pain. He is hungry but nothing else. After throwing up this afternoon he felt much better and now we are just hanging out waiting for the plan to begin to unfold tomorrow. The Doctor came back by this afternoon to check on him while he was taking a break from one of his surgeries. This is exactly the type of response that we have received from everyone here at the Hospital. We are so lucky that we chose Memorial Hospital for our treatment center. It helps to stay calm in the face of possible complications when you know that everyone including your Doctor is paying close attention to you.
The new plan. In the morning Clem gets a PICC line and will be started on TPN therapy which I believe stands for total patient nutrition. He basically has not held anything down since last Tuesday. His IV fluids will be running in this line as well. He has been switched back to clear liquid fluids and tomorrow he will be getting x-rays of his abdomen to see if anything noticable reveals itself.
What are the possibilities? A kink or some type of occlusion in his small intestine or his intestines are just slow in coming back to life. Most of these complications work themselves out within a few days but it is possible that the surgeon will have to go back in and straighten something out. For now we wait.
As long as Clem does not take anything in by mouth he does not experience nausea or much pain. He is hungry but nothing else. After throwing up this afternoon he felt much better and now we are just hanging out waiting for the plan to begin to unfold tomorrow. The Doctor came back by this afternoon to check on him while he was taking a break from one of his surgeries. This is exactly the type of response that we have received from everyone here at the Hospital. We are so lucky that we chose Memorial Hospital for our treatment center. It helps to stay calm in the face of possible complications when you know that everyone including your Doctor is paying close attention to you.
Grits do the trick
What a gorgeous day!! The sky is clear and we have an amazing view of the city from our room. Clem does in fact look renewed and last night was a restful night with very few issues with pain or nausea. We were up and around at 4 a.m. strolling in the halls and letting things settle then we were back to bed without any pain meds. Looks like the tylenol 3 is going to do the trick!
The Doctor was in this morning and was encouraged by his turn around. We'll go home tomorrow if he can eat with success today. Right now he is munching on a blueberry muffin and some down home hospital grits. He is really starving so as soon as the rest of him cooperates eating will be no problem.
Today we also change out all his dressings ourselves for the first time. I don't see that being a problem with exception of any pain that it might cause. I hate hurting him. I will update more later just wanted to let all the family know that things are going better. He wants to walk down the hall now so off we go.
The Doctor was in this morning and was encouraged by his turn around. We'll go home tomorrow if he can eat with success today. Right now he is munching on a blueberry muffin and some down home hospital grits. He is really starving so as soon as the rest of him cooperates eating will be no problem.
Today we also change out all his dressings ourselves for the first time. I don't see that being a problem with exception of any pain that it might cause. I hate hurting him. I will update more later just wanted to let all the family know that things are going better. He wants to walk down the hall now so off we go.
Sunday, May 17, 2009
A well deserved rest
10:30 p.m. Another long day. Clem was very sick this morning but the new plan seems to be working. He is still taking very little in but it is not coming back up any more. He has been very lethargic today and we have spent most of the day in silence. The phenergan this morning kicked his butt and put him in a strange place. I think he is detoxing from all the pain medicine.
Tonight we are going to start using tylenol with codeine for the pain. We learned last time to try the meds out at the hospital before going home. This gives you an idea of its effectiveness ahead of time. His pain level has actually improved. Most of his discomfort is coming from processing his food and trapped gas. We have discovered that walking helps his food to find its way into the correct pipe. So we have spent lots of time in the hall.
I am really hoping that by the morning Clem will be renewed both physically and mentally. I had to coax him out of the bed this evening at 9:00 to give him his daily bath. This says alot about where his head space was today. I realized today that Clem and I both expected him to make recovery records. His liver surgery went so well that we left the hospital in six days. I think we both expected the same thing here. We were told that his stay could be anywhere from 6 to 12 days and we planned to be going home today or tomorrow. So we are regrouping and trying to relax and let as many days go by as necessary. His body has been through a great deal surgery, chemo, radiation and now another major surgery. I think a few more days is well deserved.
Tonight we are going to start using tylenol with codeine for the pain. We learned last time to try the meds out at the hospital before going home. This gives you an idea of its effectiveness ahead of time. His pain level has actually improved. Most of his discomfort is coming from processing his food and trapped gas. We have discovered that walking helps his food to find its way into the correct pipe. So we have spent lots of time in the hall.
I am really hoping that by the morning Clem will be renewed both physically and mentally. I had to coax him out of the bed this evening at 9:00 to give him his daily bath. This says alot about where his head space was today. I realized today that Clem and I both expected him to make recovery records. His liver surgery went so well that we left the hospital in six days. I think we both expected the same thing here. We were told that his stay could be anywhere from 6 to 12 days and we planned to be going home today or tomorrow. So we are regrouping and trying to relax and let as many days go by as necessary. His body has been through a great deal surgery, chemo, radiation and now another major surgery. I think a few more days is well deserved.
The Long Day is Over
I've been working on this photo journal for a few days now in the quiet times when Clem was sleeping. I've never done one of these before so there are imperfections that I hope to someday work out. Maybe I will even read the help menu. Anyway, I have entitled this The Long Day is Over because of our recent experiences and I have included music of the same title by Nora Jones. Hope you enjoy.
We seem to have turned a corner now. He is resting well with the aid of "Sargeant Valium" (Clem's name for the drug) after eating most of a bowl of potato soup and some peach cobbler. The biggest indicator that things have turned is his desire for food. He has actually said wow! that tastes good!
Hopefully tomorrow will bring the exit of the drain and a possible discharge from the Hospital if he continues to improve. He is getting up and down great, walking fine, and is handling the care of his ileostomy. His fluid balance is his last obstacle and I have a feeling that we are on our way to resolving this too.
Blow up owls do not keep the creatures away
I can't believe it is noon already. This morning has been a whirlwind. I woke to find Clem literally dazed and confused talking nonsense to the nurse about his dreams and struggling to keep both eyes going in the same direction. The breakfast tray had already come and gotten cold and she was urging him to eat. I had not heard any of this. I am a night person and I laid awake last night for hours after Clem crashed so I was sleeping really deep this morning.
Jumping from my little cot I felt guilty that he had been in this state alone. It didn't take long for me to realize that he was pretty much bonkers. I took a deep breath and tried to slow myself down and slowly fluffed him and washed his face until he agreed to attempting the cream of wheat. About two hours later he had consumed almost all of it along with intermittent sips of tea. The Doctor came and went, the nurses came and went, the lab people came and went, and eventually the cream of wheat came and went.
Clem seems to be going through a big adjustment phase inside. His ileostomy put out 2400cc of fluid yesterday despite the Imodium that was prescribed to slow this down. Today the medication will be doubled. He vomited at least that much and took in nothing. His IV fluids saved him yesterday and today the Doctor has increased those again. The plan is to take him off the dilaudid, keep a back up iv morphine if needed, and use valium and zophran. Zophran is an awesome anti nausea drug and he has used it throughout his chemo and any other time that he has experienced nausea. It is very effective and does not have all the nasty side effects of phenergan.
The Doctor thinks that Clem is reacting to the complex cocktail of drugs and that what he really needs is something to stop the muscle spasms that he is having in his gut. Everytime he has a spasm it causes terrible pain in his incision area, every time he has this pain he starts having nausea, he stops eating and drinking with the nausea and this causes dehydration which perpetuates the nausea etc.... So he is going off the drugs and onto valium. He will at least be a happier camper. This morning in the middle of his phenergan stupor he warned me that he was pissed off about everything. The phenergan was making him have crazy thoughts and the air around him was irritating him. It is probably fortunate that he was exhausted because he may have ripped the curtains down otherwise. I just tried not to stimulate him any more than necessary and encouraged him to sleep until all the symptoms passed.
Unfortunately barfing up all his breakfast has calmed him down alot. He seems to be resting comfortably right now and I am hoping for a turn around soon. I actually had a moment yesterday where I wanted to sit in the corner and cry but fortunately the craziness of the day didn't allow this option and soon it passed and I was back to the regime therapy. I hope that Clem will trust me after this episode. Everything that I have coaxed into his body in the last 24 hours has come back up on him. Wearing the Nazi hat has really sucked.
Despite everything that has been going on Clem has been walking the halls constantly and sitting up in his chair. He really wants to be better. Yesterday we went back out to the little balcony over the garden and watched the rain. Clem spotted a huge hawk sitting on a railing right beside a fake blow up owl that had been duct tapped there to deter creatures. (Note to self...that doesn't work!!!) We were amazed at the beautiful creature and spent a good ten minutes just watching it hoping that it would fly. Turning to come inside I could see that this had renewed him and given him the extra energy he needed to do a few more laps down the long claustrophobic corridors.
The bright spot has been a little hard to search out over the last few days and fortunately we sense when the other one needs a positive thought and one of us jokes or plants a new thought for focus. This morning I told the nurse about Clem's trip to the North Pole. She asked him lots of questions about it and of course marveled at his adventurous spirit. For just a few minutes you could see him reliving a bit of that time and it took him away from the black hole he has found himself in lately. "I love you sweetheart thank you for taking care of me" is all that it takes for me. Fortunately he tells me this everyday and it fuels me to keep the Nazi hat firmly on my head.
Jumping from my little cot I felt guilty that he had been in this state alone. It didn't take long for me to realize that he was pretty much bonkers. I took a deep breath and tried to slow myself down and slowly fluffed him and washed his face until he agreed to attempting the cream of wheat. About two hours later he had consumed almost all of it along with intermittent sips of tea. The Doctor came and went, the nurses came and went, the lab people came and went, and eventually the cream of wheat came and went.
Clem seems to be going through a big adjustment phase inside. His ileostomy put out 2400cc of fluid yesterday despite the Imodium that was prescribed to slow this down. Today the medication will be doubled. He vomited at least that much and took in nothing. His IV fluids saved him yesterday and today the Doctor has increased those again. The plan is to take him off the dilaudid, keep a back up iv morphine if needed, and use valium and zophran. Zophran is an awesome anti nausea drug and he has used it throughout his chemo and any other time that he has experienced nausea. It is very effective and does not have all the nasty side effects of phenergan.
The Doctor thinks that Clem is reacting to the complex cocktail of drugs and that what he really needs is something to stop the muscle spasms that he is having in his gut. Everytime he has a spasm it causes terrible pain in his incision area, every time he has this pain he starts having nausea, he stops eating and drinking with the nausea and this causes dehydration which perpetuates the nausea etc.... So he is going off the drugs and onto valium. He will at least be a happier camper. This morning in the middle of his phenergan stupor he warned me that he was pissed off about everything. The phenergan was making him have crazy thoughts and the air around him was irritating him. It is probably fortunate that he was exhausted because he may have ripped the curtains down otherwise. I just tried not to stimulate him any more than necessary and encouraged him to sleep until all the symptoms passed.
Unfortunately barfing up all his breakfast has calmed him down alot. He seems to be resting comfortably right now and I am hoping for a turn around soon. I actually had a moment yesterday where I wanted to sit in the corner and cry but fortunately the craziness of the day didn't allow this option and soon it passed and I was back to the regime therapy. I hope that Clem will trust me after this episode. Everything that I have coaxed into his body in the last 24 hours has come back up on him. Wearing the Nazi hat has really sucked.
Despite everything that has been going on Clem has been walking the halls constantly and sitting up in his chair. He really wants to be better. Yesterday we went back out to the little balcony over the garden and watched the rain. Clem spotted a huge hawk sitting on a railing right beside a fake blow up owl that had been duct tapped there to deter creatures. (Note to self...that doesn't work!!!) We were amazed at the beautiful creature and spent a good ten minutes just watching it hoping that it would fly. Turning to come inside I could see that this had renewed him and given him the extra energy he needed to do a few more laps down the long claustrophobic corridors.
The bright spot has been a little hard to search out over the last few days and fortunately we sense when the other one needs a positive thought and one of us jokes or plants a new thought for focus. This morning I told the nurse about Clem's trip to the North Pole. She asked him lots of questions about it and of course marveled at his adventurous spirit. For just a few minutes you could see him reliving a bit of that time and it took him away from the black hole he has found himself in lately. "I love you sweetheart thank you for taking care of me" is all that it takes for me. Fortunately he tells me this everyday and it fuels me to keep the Nazi hat firmly on my head.
Saturday, May 16, 2009
YUK!
7:30 p.m. After a long hard day we have a new plan for tonight and tomorrow. The Doctor put Clem back on his IV fluids and after a bag and a half he finally has color again and is beginning to pee. Dehydration sucks. I think he may be having trouble with his pain medication (dilaudid) because all this started when they changed him to this late yesterday. So we are going to try to keep him on the nausea medication throughout the night and use some alternatives to the dilaudid. There are bound to be a few hard days and I am really glad that this one is almost behind us.
The Tennessee Two Step
9:30 a.m. Looks like we are at the point where we are taking the two steps backward at the moment. After a energetic start Clem has become nauseated again and has been throwing up quite violently. He is drugged now and after an hour of struggling he is back in the bed asleep. Our plan is to let him sleep as long as he can and then get up an try again. So far today his output has been way more than his input. The Doctor visited and gave him some drugs to slow down his ostomy output but his vomiting is very concerning. His IV's have been slowed way down so I would not be surprised if some of his nausea is from dehydration. We are just going to keep trying different ways of keeping fluids in him until something works. If we reach a critical point the staff can always crank the IV fluid back up and give him some help. Maybe they cut it back too severely yesterday.
Clem is very compliant. He sticks with the plan even though there are speed bumps along the way and this is definitely one of those speed bumps. Even after violently puking he got up, bathed, changed his gown and sat in the chair. All of those things are still critical. He is an awesome patient because he truly wants to be better and willing to do whatever it takes.
I know I blog about details that some of you may not want to read. I do this in the event that other colon cancer patients or caregivers are interested in our story and are looking for useful information. I have read several accounts on the web and found that I wanted more details so I could know what to expect and how to prepare. I hope I don't gross you out too much.
As you can tell from my post, this morning would not be a good time to visit. Like I have said before things can change drastically within a moment and I am hoping that after he wakes up that we will be doing the one step forward thing again. I'll keep the blog updated often in case you want to visit this weekend. We will definitely be staying until Monday maybe a little longer depending on the whole input/output thing. Say a little prayer for the man this morning he is having a tough day so far.
Clem is very compliant. He sticks with the plan even though there are speed bumps along the way and this is definitely one of those speed bumps. Even after violently puking he got up, bathed, changed his gown and sat in the chair. All of those things are still critical. He is an awesome patient because he truly wants to be better and willing to do whatever it takes.
I know I blog about details that some of you may not want to read. I do this in the event that other colon cancer patients or caregivers are interested in our story and are looking for useful information. I have read several accounts on the web and found that I wanted more details so I could know what to expect and how to prepare. I hope I don't gross you out too much.
As you can tell from my post, this morning would not be a good time to visit. Like I have said before things can change drastically within a moment and I am hoping that after he wakes up that we will be doing the one step forward thing again. I'll keep the blog updated often in case you want to visit this weekend. We will definitely be staying until Monday maybe a little longer depending on the whole input/output thing. Say a little prayer for the man this morning he is having a tough day so far.
Up at the crack of dawn
5 a.m. awake for the early morning maintenance of the tubes and emptying of the drains. I found bananas last night in the cafeteria and Clem has been slowly munching one and attempting to get down fluids. I have never seen him this cautious with his eating. I continue to offer him all sorts of soft things like yogurt and ice cream and soup but nothing seems appealing to him yet. I am hoping that this may change today.
The staff continues to change his pain meds in preparation for going home. He does seem to be hitting the pump less but really pays the price when he does not keep the pain in check. Everything is a constant evaluation of too much or too little. Balance is our goal.
We have been up this morning already walking the halls. Early is better here because in about an hour the atmosphere begins to take on the appearance of a small city coming to life. Dodging carts and rushing staff makes the morning walk more hectic than restorative. We found an open door to an outside balcony and were able to step outside and check out the view of the city still asleep. It felt good to breathe the morning air.
Clem has moments of boredom throughout the day and he checks his emails often. It would be great if you could contact him by email. Phone conversations take a little more out of him. He can pick the best time to return emails and texts in between all of the many activities that go on here.
Today is Saturday and I am horrified at the thought of going home with Clem just yet. I am not sure that I can help him manage his pain and nausea and fluids. The Doctor warned us yesterday that 20% of patients are rehospitalized for dehydration after undergoing this procedure. I can see why. It appears that his body is having to learn an entirely new way of operating and Clem continues to be amazed at the new and/or false sensations that he is feeling.
We both had a good nights sleep. The staff seemed to leave us alone and just peek in at us without flipping on the light or making a bunch of noise. Clem has turned on an old Western so he must be wide awake. I think I'm going to crawl back in the back and go to my happy place for a while before all the fresh coffee filled day shift comes steam rolling in.
The staff continues to change his pain meds in preparation for going home. He does seem to be hitting the pump less but really pays the price when he does not keep the pain in check. Everything is a constant evaluation of too much or too little. Balance is our goal.
We have been up this morning already walking the halls. Early is better here because in about an hour the atmosphere begins to take on the appearance of a small city coming to life. Dodging carts and rushing staff makes the morning walk more hectic than restorative. We found an open door to an outside balcony and were able to step outside and check out the view of the city still asleep. It felt good to breathe the morning air.
Clem has moments of boredom throughout the day and he checks his emails often. It would be great if you could contact him by email. Phone conversations take a little more out of him. He can pick the best time to return emails and texts in between all of the many activities that go on here.
Today is Saturday and I am horrified at the thought of going home with Clem just yet. I am not sure that I can help him manage his pain and nausea and fluids. The Doctor warned us yesterday that 20% of patients are rehospitalized for dehydration after undergoing this procedure. I can see why. It appears that his body is having to learn an entirely new way of operating and Clem continues to be amazed at the new and/or false sensations that he is feeling.
We both had a good nights sleep. The staff seemed to leave us alone and just peek in at us without flipping on the light or making a bunch of noise. Clem has turned on an old Western so he must be wide awake. I think I'm going to crawl back in the back and go to my happy place for a while before all the fresh coffee filled day shift comes steam rolling in.
Friday, May 15, 2009
Comfort Food
Today was a sunshine day! We are fortunate to have a very good room this time both in size and the fact that we have an entire wall of windows. This morning we woke with a new attitude because sleep was plentiful and pain was subdued. Clem actually woke me at 4 a.m. to help with a few things and then to talk. He also was hungry and asked for some chicken noodle soup all positive signs in my book. My conversation didn't last too long because I crashed in mid sentence but around 5 a.m. the daily grind began around here and I slept in little 30 minute spurts until around 9 a.m. Clem on the other hand returned text messages and surfed on the computer in the wee morning hours.
Breakfast, walking, and bathing took up the next few hours and then we were met by the ostomy nurse who conducted about an hour training with us on how to care for and replace all the "gear" that he will be wearing for the next six weeks. Clem sat in the chair for about an hour during the training and afterwards I actually got to bathe and sneak downstairs for some brunch. When I returned I found both the Doctor and a few family members lined up to see Clem and wish him well. The Doctor again was very positive and mentioned sending us home sometime this weekend. We also got a surprise visit today from our liver surgeon, Dr. Charles Portera, who is our hero!!
Clem's Mom and sister came for a few hours today from Huntsville and we had a wonderful visit with them. His family has been very supportive and loving and it has meant so much to both of us. This evening we both crashed for a few hours of sleep which was so restorative for me. Clem on the other hand does not feel so well right now and I think he may have over done it a bit. Food is not his friend just yet and he has been having more nausea and just a bit of vomiting. I think the balance of food/fluids and output is going to be the real challenge for a while. The Doctor is weening him off his IV fluids so he can begin training his body to consume large amount of fluids.
It is very frustrating to watch the hospital food come. He consumed more of the liquid diet than any of the solid food they have brought him mostly because it looks so disgusting. I think that we should force hospitals to ban serving their patients turnip greens unless they actually ask for them. When you were home from school sick did your Mother ever bring you turnip greens as a comfort food? No of course not she made chicken soup or potato soup, milk shakes, yogurt, or maybe tomato soup and grilled cheese...never turnip greens. Greens are categorized in my book as a preventive food not a recovery food. You eat them when you are healthy to stay that way because that is the only time you can get them down. Sorry ranting again!!
This evening as I sit here writing I am remembering being in this place before. The place that is slow and steady one step forward and sometimes one step back. I am concerned for the first time about Clem loosing weight because he is having such difficulty with eating. I am trying to center myself and remember that it is still really early in the game and that this can turn around fast. We have been very focused on Clem maintaining his weight. He has actually gained about five pounds over the past few weeks while off treatment and in anticipation of this phase of adjustment. We read when he was initially diagnosed that 40% of cancer patients die from malnutrition and we decided early on to do everything we could not to add any numbers to this statistic.
It is 8 p.m. and the lack of noise in the hall indicates that the shift change has taken place and the floor is settling down for the night. I can see the lights of the city beginning to spark from our windows and I am wishing that they were open so I could smell the scent of fresh rainfall in the air. This place is very foreign to me. Clem and I live with the elements. Our windows are open at every opportunity and our heat and air conditioning are last ditch efforts for comfort instead of the norm. I am unaccustom to a man made environment and when it is still and quiet here I become aware of my lost connection with nature.
It is these rare quiet times that I am able to regroup and remind myself of the very few things that we need to do in order to survive this. My experience so far tells me not to think too far ahead that it will make you crazy and cause you to loose focus and become afraid. So I am now watching him rest peacefully and reviewing all the events of the day sorting out the information that is important for his recovery.
Being helpless is a deep black hole for me. I attempt to avoid this feeling by having a plan and implementing it daily. Sometimes I drive Clem crazy doing this but he does recognize that it helps me to maintain my sanity. Right now my plan involves patience. I possess very little of this quality naturally so I have to work at finding activities that allow me to at least appear patient. I am not his primary caregiver here. He has a staff of 15 professionals at his disposal at any given time and even though I jump in to help most of the time I am just a cheerleader. I think that is why I blog so much at the hospital because I am trapped in a small room and my brain can be very busy while blogging.
I think it is time for me to go and forage for food. Clem appears to be resting well and my tummy is reminding me that brunch at 11 a.m. was the last time that I addressed this issue. Maybe if I am lucky they will be serving left over turnip greens in the cafeteria. YUM!
Breakfast, walking, and bathing took up the next few hours and then we were met by the ostomy nurse who conducted about an hour training with us on how to care for and replace all the "gear" that he will be wearing for the next six weeks. Clem sat in the chair for about an hour during the training and afterwards I actually got to bathe and sneak downstairs for some brunch. When I returned I found both the Doctor and a few family members lined up to see Clem and wish him well. The Doctor again was very positive and mentioned sending us home sometime this weekend. We also got a surprise visit today from our liver surgeon, Dr. Charles Portera, who is our hero!!
Clem's Mom and sister came for a few hours today from Huntsville and we had a wonderful visit with them. His family has been very supportive and loving and it has meant so much to both of us. This evening we both crashed for a few hours of sleep which was so restorative for me. Clem on the other hand does not feel so well right now and I think he may have over done it a bit. Food is not his friend just yet and he has been having more nausea and just a bit of vomiting. I think the balance of food/fluids and output is going to be the real challenge for a while. The Doctor is weening him off his IV fluids so he can begin training his body to consume large amount of fluids.
It is very frustrating to watch the hospital food come. He consumed more of the liquid diet than any of the solid food they have brought him mostly because it looks so disgusting. I think that we should force hospitals to ban serving their patients turnip greens unless they actually ask for them. When you were home from school sick did your Mother ever bring you turnip greens as a comfort food? No of course not she made chicken soup or potato soup, milk shakes, yogurt, or maybe tomato soup and grilled cheese...never turnip greens. Greens are categorized in my book as a preventive food not a recovery food. You eat them when you are healthy to stay that way because that is the only time you can get them down. Sorry ranting again!!
This evening as I sit here writing I am remembering being in this place before. The place that is slow and steady one step forward and sometimes one step back. I am concerned for the first time about Clem loosing weight because he is having such difficulty with eating. I am trying to center myself and remember that it is still really early in the game and that this can turn around fast. We have been very focused on Clem maintaining his weight. He has actually gained about five pounds over the past few weeks while off treatment and in anticipation of this phase of adjustment. We read when he was initially diagnosed that 40% of cancer patients die from malnutrition and we decided early on to do everything we could not to add any numbers to this statistic.
It is 8 p.m. and the lack of noise in the hall indicates that the shift change has taken place and the floor is settling down for the night. I can see the lights of the city beginning to spark from our windows and I am wishing that they were open so I could smell the scent of fresh rainfall in the air. This place is very foreign to me. Clem and I live with the elements. Our windows are open at every opportunity and our heat and air conditioning are last ditch efforts for comfort instead of the norm. I am unaccustom to a man made environment and when it is still and quiet here I become aware of my lost connection with nature.
It is these rare quiet times that I am able to regroup and remind myself of the very few things that we need to do in order to survive this. My experience so far tells me not to think too far ahead that it will make you crazy and cause you to loose focus and become afraid. So I am now watching him rest peacefully and reviewing all the events of the day sorting out the information that is important for his recovery.
Being helpless is a deep black hole for me. I attempt to avoid this feeling by having a plan and implementing it daily. Sometimes I drive Clem crazy doing this but he does recognize that it helps me to maintain my sanity. Right now my plan involves patience. I possess very little of this quality naturally so I have to work at finding activities that allow me to at least appear patient. I am not his primary caregiver here. He has a staff of 15 professionals at his disposal at any given time and even though I jump in to help most of the time I am just a cheerleader. I think that is why I blog so much at the hospital because I am trapped in a small room and my brain can be very busy while blogging.
I think it is time for me to go and forage for food. Clem appears to be resting well and my tummy is reminding me that brunch at 11 a.m. was the last time that I addressed this issue. Maybe if I am lucky they will be serving left over turnip greens in the cafeteria. YUM!
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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