The last two weeks have, generally, been pretty rough. Last weekend we had the whole puking/hospital thing that was miserable. We got that cleared up and it hasn't returned, fortunately, but my lips/tongue/cheeks/throat are REALLY having a tough time this week with, I presume, the radiation. Throw in yet another fine case of Thrush on top of those sores and it makes for a mouth that can hardly do anything.
Certainly no eating, but that's not new, but it's elevated to difficulties drinking just water, swallowing pills. Talking is almost impossible above a whisper and even that hurts my tongue to enunciate the words.
Jenny found me an old 6" x 8" or so dry erase board with it's own carrying case for markers and something to erase. I carry that around but it's still a pain. I went to my brother's yesterday and forgot it so my nephew loaned me his MagnaDoodle. It worked pretty well.
So, it's with this apprehension that I enter my final week of treatment. Tonight I get to take my first Chemo pill then tomorrow we're back down to K.U. for treatments.
It's getting late in the overall process so I've gotten lots of the expected question along the lines of "so how quick do you bounce back after treatments are over?"
I really don't know the answer to that. Hopefully we'll do a better job this week than last in staying on top on the nausea. Which would mean that piece should be relatively behind my pretty soon after treatment. But the fatigue, mouth pain, throat pain, skin pain, mucousy congestion, etc. could linger for quite some time. No idea when I'll be able to start eating again. Ron, who was in my same treatment but had started 6-weeks earlier -- so finished 6-weeks earlier -- got started eating slowly after a couple of weeks. But his wife cautioned to ease into it. Every Doctor/Nurse I talk to tells me that every patient is different. I believe it.
So really, we'll just have to see. My goal is to eat SOMETHING by mouth at Christmas dinner. It might just be a helping of Mashed Potatoes but I plan to eat something. That would be almost 3-weeks after my last treatment so I think that's a pretty conservative goal. Regardless, that would be an improvement over Thanksgiving where I got to visit with everyone while they ate, but no eating for myself.
Well, I'd better go get started with my Sunday. I've got a pile of pills waiting for me on the counter.
Sunday, November 30, 2008
Thursday, November 27, 2008
Well, it's Thursday morning. Thanksgiving morning.
As usual, I'm up before the rest of the crew. In fact I've been up for quite a while. Sleep hasn't been very friendly with me of late. It leaves me nodding off in the middle of conversations, TV Shows, or whatever goes on during the day.
The nausea and vomiting that hit me last weekend appears to be fully behind me for this round of treatment. The Radiation effects have been kicking in the last couple of days -- sore mouth, sore tongue, sore throat, thick, mucousy saliva, nose bleeds/sores, etc. My neck, amazingly though, is not nearly as bad as it was earlier in the whole treatment. The skin's tight, sensitive in areas, etc. but nothing like it was when I posted the "Red Neck" picture.
My boss stopped by the house yesterday to say hi and drop off a "care package" from the folks at work. It was good to talk to him and get updates on everything at the office. He told me I looked a lot better than he was expecting me to have looked. I think that was a complement. But when he left Jenny and I had to look at each other and breath a sigh of relief. Sorry, but with the economy the way it is and the things I see happening to friends around me at their jobs, the thought had creeped its way into both of our heads that Dave was stopping by to let me know about something bad -- they were laying me off, they were closing the Research Center, whatever. In fact, it was just a friendly visit -- and a good one at that -- but Mr. Imagination can really mess with your head if you let him.
So this being Thanksgiving, I at first glance feel very little to be Thankful for. But a quick look beyond the obvious negative things that are going on in my life unveil plenty of positive things to genuinely be thankful for. Having a competent Cancer Treatment Center so close, a job with good insurance coverage, a supportive family, supportive friends, etc., etc. The list could get pretty lengthy. So yes, I have cancer and I feel like crap 24-7 lately, but in the grand scheme of things, there's plenty to be thankful for and, I suppose, taking a moment to recognize that is what today's all about.
One more week of treatment remaining. That will get the logistical issue of driving back and forth to KU twice a day out of the way but that ending of treatment will just be the beginning of the getting better process. Like everything, I'm told it varies from person to person but I should expect 2-weeks from the end of treatments before I START feeling better and, from there, it will just be a gradual process. I'm certainly anxious to get the treatments done but I'm even more anxious to begin feeling better again. Just not sure yet how long I have to wait for that.
Enough for today. We're heading over to my Brother's to hang out today for Thanksgiving. I'm a little unsure how the day's going to go. We'll just play it by ear and react as needed. Have a great day today.
As usual, I'm up before the rest of the crew. In fact I've been up for quite a while. Sleep hasn't been very friendly with me of late. It leaves me nodding off in the middle of conversations, TV Shows, or whatever goes on during the day.
The nausea and vomiting that hit me last weekend appears to be fully behind me for this round of treatment. The Radiation effects have been kicking in the last couple of days -- sore mouth, sore tongue, sore throat, thick, mucousy saliva, nose bleeds/sores, etc. My neck, amazingly though, is not nearly as bad as it was earlier in the whole treatment. The skin's tight, sensitive in areas, etc. but nothing like it was when I posted the "Red Neck" picture.
My boss stopped by the house yesterday to say hi and drop off a "care package" from the folks at work. It was good to talk to him and get updates on everything at the office. He told me I looked a lot better than he was expecting me to have looked. I think that was a complement. But when he left Jenny and I had to look at each other and breath a sigh of relief. Sorry, but with the economy the way it is and the things I see happening to friends around me at their jobs, the thought had creeped its way into both of our heads that Dave was stopping by to let me know about something bad -- they were laying me off, they were closing the Research Center, whatever. In fact, it was just a friendly visit -- and a good one at that -- but Mr. Imagination can really mess with your head if you let him.
So this being Thanksgiving, I at first glance feel very little to be Thankful for. But a quick look beyond the obvious negative things that are going on in my life unveil plenty of positive things to genuinely be thankful for. Having a competent Cancer Treatment Center so close, a job with good insurance coverage, a supportive family, supportive friends, etc., etc. The list could get pretty lengthy. So yes, I have cancer and I feel like crap 24-7 lately, but in the grand scheme of things, there's plenty to be thankful for and, I suppose, taking a moment to recognize that is what today's all about.
One more week of treatment remaining. That will get the logistical issue of driving back and forth to KU twice a day out of the way but that ending of treatment will just be the beginning of the getting better process. Like everything, I'm told it varies from person to person but I should expect 2-weeks from the end of treatments before I START feeling better and, from there, it will just be a gradual process. I'm certainly anxious to get the treatments done but I'm even more anxious to begin feeling better again. Just not sure yet how long I have to wait for that.
Enough for today. We're heading over to my Brother's to hang out today for Thanksgiving. I'm a little unsure how the day's going to go. We'll just play it by ear and react as needed. Have a great day today.
Monday, November 24, 2008
WOW! What a Weekend
I'm sure you all remember from when you were reading my Saturday morning post (as opposed to the Saturday Evening Post) so intently how I said that I had had a rough week but was feeling better, in no immediate danger of throwing up any more.
Couldn't have been more wrong!
In fact, the vomiting continued shortly after my post and continued on. When I went to have my pump removed that morning they kept us for a few hours to pump in some fluids and some I.V. anti-nausea drugs. She told us I'd be feeling like a new person in a couple of hours.
Couldn't have been more wrong II!
The vomiting continued on all afternoon and evening. Every two or three hours. And I'm sure you can imagine how much fun that was when you really have nothing in your stomach to throw up. After that continued Saturday night, I called the doc Sunday morning. He called in a new prescription to try and said that should clear things up in a couple of hours.
Couldn't have been more wrong III!
When that didn't work I called him back again and he told me to come down to KU to be admitted. So, off we went. At this point -- according to Jenny -- I had uttered all of three, maybe four words and, according to Tim, spent a bunch of time moaning and groaning over the previous 48 hours. So we spent an exciting afternoon, evening and night at K.U. Med Center. They pumped in four liters of fluid and a host of different anti-nausea and steroid drugs. Finally, somewhere around midnight, they did something right and the vomiting finally stopped.
After I got through the night without vomiting, I got to eat a little bit Monday morning. When I held that down I got to eat a little more (we're talking feeding tube eating). And finally, by mid-afternoon I was feeling pretty OK. When the doctor came in mid-afternoon to discuss if they should release me or not, I kinda had to talk them into letting me go. Not a big stretch or anything, but they were contemplating keeping me another night for observation. But I'm not taking any big risks or anything by having come home. And, I know where they're at if something goes awry.
The BEST part of the conversation with the doc -- really -- was that the doctor apologized for they're letting me get as sick as I was. He said that never should have happened and they should have been more on top of things. He said this won't happen next time. That's what was the best part -- not the apology. Although the apology didn't suck or anything either.
Jenny and I certainly weren't excited about my being sick, but we really thought -- hey, I have cancer, I'm talking Chemo, I'm gonna be sick. Instead, we now know what to watch for and, if things start going bad next time, I know what to do so, hopefully, this won't happen again.
But, feeling much better tonight. Hopefully things will stay that way.
Couldn't have been more wrong!
In fact, the vomiting continued shortly after my post and continued on. When I went to have my pump removed that morning they kept us for a few hours to pump in some fluids and some I.V. anti-nausea drugs. She told us I'd be feeling like a new person in a couple of hours.
Couldn't have been more wrong II!
The vomiting continued on all afternoon and evening. Every two or three hours. And I'm sure you can imagine how much fun that was when you really have nothing in your stomach to throw up. After that continued Saturday night, I called the doc Sunday morning. He called in a new prescription to try and said that should clear things up in a couple of hours.
Couldn't have been more wrong III!
When that didn't work I called him back again and he told me to come down to KU to be admitted. So, off we went. At this point -- according to Jenny -- I had uttered all of three, maybe four words and, according to Tim, spent a bunch of time moaning and groaning over the previous 48 hours. So we spent an exciting afternoon, evening and night at K.U. Med Center. They pumped in four liters of fluid and a host of different anti-nausea and steroid drugs. Finally, somewhere around midnight, they did something right and the vomiting finally stopped.
After I got through the night without vomiting, I got to eat a little bit Monday morning. When I held that down I got to eat a little more (we're talking feeding tube eating). And finally, by mid-afternoon I was feeling pretty OK. When the doctor came in mid-afternoon to discuss if they should release me or not, I kinda had to talk them into letting me go. Not a big stretch or anything, but they were contemplating keeping me another night for observation. But I'm not taking any big risks or anything by having come home. And, I know where they're at if something goes awry.
The BEST part of the conversation with the doc -- really -- was that the doctor apologized for they're letting me get as sick as I was. He said that never should have happened and they should have been more on top of things. He said this won't happen next time. That's what was the best part -- not the apology. Although the apology didn't suck or anything either.
Jenny and I certainly weren't excited about my being sick, but we really thought -- hey, I have cancer, I'm talking Chemo, I'm gonna be sick. Instead, we now know what to watch for and, if things start going bad next time, I know what to do so, hopefully, this won't happen again.
But, feeling much better tonight. Hopefully things will stay that way.
Saturday, November 22, 2008
Week 4 Winding Down -- Thank Gawd!
I get my pump off in a few hours and I'll be done with week 4 -- none too soon. This has been a rough, rough week. Been kinda wierd, though.
Since Wednesday afternoon when the Chemo Drugs kicked in, I've felt horrible. During the day I feel horrible, I sleep a lot and just kinda lay around. But evening comes and, for some reason, things go way down hill.
Every evening I got to feeling worse then the vomiting kicks in -- and then I really start feeling bad. Tim's girlfriend was over Thursday night. I'm guessing she'll not be anxious to return after the show I put on.
Trying to stay hydrated but that's a challenge as well. It was on two different sets of scales so I'm not sure how accurate it was but, in theory, I lost 8 lbs between Tuesday morning and Friday morning. I could believe it, though.
But, this morning leaves me feeling bad but, I think, in little danger of vomiting. So hopefully I can get the pump off and get enough of this crap out of my system that I'll be done with the puking for the week.
I know, I'm sure I drive lots of you crazy with all these pleasant, upbeat posts like this. But sorry, I just can't help myself.
Since Wednesday afternoon when the Chemo Drugs kicked in, I've felt horrible. During the day I feel horrible, I sleep a lot and just kinda lay around. But evening comes and, for some reason, things go way down hill.
Every evening I got to feeling worse then the vomiting kicks in -- and then I really start feeling bad. Tim's girlfriend was over Thursday night. I'm guessing she'll not be anxious to return after the show I put on.
Trying to stay hydrated but that's a challenge as well. It was on two different sets of scales so I'm not sure how accurate it was but, in theory, I lost 8 lbs between Tuesday morning and Friday morning. I could believe it, though.
But, this morning leaves me feeling bad but, I think, in little danger of vomiting. So hopefully I can get the pump off and get enough of this crap out of my system that I'll be done with the puking for the week.
I know, I'm sure I drive lots of you crazy with all these pleasant, upbeat posts like this. But sorry, I just can't help myself.
Thursday, November 20, 2008
Ton-O-Bricks
Well, Wednesday is usually the day of treatment week when the chemo drugs kick in and I start feeling like cr&% for the rest of the week. This week was no different on that front but when they kicked in, they kicked in.
Usually I feel bad but that's as far as it goes. Last night I took it a big step further and was vomiting, completely veg'd out in the recliner feeling really bad. Hit me a good bit harder this week than previous weeks.
I actually feel a bit better this morning. Still pretty puny but I was able to get down my meds plus a small glass of water and, the fact that I'm typing here is a big improvement over last night. I need to "eat" but I'm a bit leery. But hopefully last night wasn't some sign of things to come and, instead, was just some fluky blip on the radar where I can finish out the week just feeling like poop instead of REALLY feeling like poop.
Usually I feel bad but that's as far as it goes. Last night I took it a big step further and was vomiting, completely veg'd out in the recliner feeling really bad. Hit me a good bit harder this week than previous weeks.
I actually feel a bit better this morning. Still pretty puny but I was able to get down my meds plus a small glass of water and, the fact that I'm typing here is a big improvement over last night. I need to "eat" but I'm a bit leery. But hopefully last night wasn't some sign of things to come and, instead, was just some fluky blip on the radar where I can finish out the week just feeling like poop instead of REALLY feeling like poop.
Tuesday, November 18, 2008
Brain Problems
OK, after my last post I've had several people ask where the I.C.U. and my mom came from. I just threw that in out of the blue.
Apparently in my foggy state over the weekend I dreamed that I had already posted something about that so Tuesday I was just updating briefly.
So, here's the scoop. Mom's had some problems with heavy bleeding from her sinus/nose lately. They've been in to the ENT and were working on it. But Friday evening she had another episode and dad got worried and called 911. They came, mom was a bit non-responsive to their questions, so they took her to St. Lukes down by the plaza, thinking there was a possibility of a stroke.
Well her hemoglobin was way low but they admitted her to I.C.U. to check out the remaining possibility of a stroke. Over the weekend they got the bleeding under control, did some preliminary tests and Monday and Tuesday have been doing more tests. It does appear she's had a recent stroke, presumably Friday night, but all thing considered she's doing pretty well. The stroke was on the left side of her brain -- effecting the right side of her body -- but she's eating with her right hand, her right leg is just as strong as her left, but her speech is a bit more garbled than it was before.
They're going to get started tomorrow working on her nose/sinus to get a long-term solution to the bleeding and get a gameplan for therapy to get her back to where she was before Friday.
That's the update -- with additional details -- that I THOUGHT I had posted over the weekend. So now things might make a little more sense.
I did get down to visit her this evening. Tomorrow is when my Chemo Drugs usually kick in so I should feel like doo-doo the rest of the week and won't be up to going to see mom. I did get to where my surgical mask, though. I'm sure everyone there thought I was a surgeon, don't you think? I was a little surprised no one stopped to ask me surgical-type questions. Maybe my jeans, tennis shoes and regular shirt had something to do with it.
Apparently in my foggy state over the weekend I dreamed that I had already posted something about that so Tuesday I was just updating briefly.
So, here's the scoop. Mom's had some problems with heavy bleeding from her sinus/nose lately. They've been in to the ENT and were working on it. But Friday evening she had another episode and dad got worried and called 911. They came, mom was a bit non-responsive to their questions, so they took her to St. Lukes down by the plaza, thinking there was a possibility of a stroke.
Well her hemoglobin was way low but they admitted her to I.C.U. to check out the remaining possibility of a stroke. Over the weekend they got the bleeding under control, did some preliminary tests and Monday and Tuesday have been doing more tests. It does appear she's had a recent stroke, presumably Friday night, but all thing considered she's doing pretty well. The stroke was on the left side of her brain -- effecting the right side of her body -- but she's eating with her right hand, her right leg is just as strong as her left, but her speech is a bit more garbled than it was before.
They're going to get started tomorrow working on her nose/sinus to get a long-term solution to the bleeding and get a gameplan for therapy to get her back to where she was before Friday.
That's the update -- with additional details -- that I THOUGHT I had posted over the weekend. So now things might make a little more sense.
I did get down to visit her this evening. Tomorrow is when my Chemo Drugs usually kick in so I should feel like doo-doo the rest of the week and won't be up to going to see mom. I did get to where my surgical mask, though. I'm sure everyone there thought I was a surgeon, don't you think? I was a little surprised no one stopped to ask me surgical-type questions. Maybe my jeans, tennis shoes and regular shirt had something to do with it.
Week 4 off and Running
Well, I started my fourth of five weeks of treatment yesterday. 18 days from today and I'll be getting my pump removed for the final time -- free of this treatment cr&%. Can't wait.
Last weekend wasn't quite the respit I'd experienced in previous off-weeks. I never really got to feeling that great. I was very tired -- sleepy and energy level -- and just never got going. I did head down to see mom at the Hospital for a while Sunday morning but had to wear a medical mask the whole time and was given a special back-door access so I entered the I.C.U. right next to mom's room rather than have to walk through the whole unit to get to her.
Mom's making progress, slow but sure. Off the ventilator and they're able to begin other tests to see what's going on. I think results are back on most of those tests today.
Unrelated to the I.C.U. visit because it started while I was there, I came down with a low-grade, 100.8 fever on Sunday. Had that all day but it broke during the night, leaving me drenched in sweat in bed about 3:00 in the morning.
Good news of late, though, I've been sleeping like a mad-man. About 15 hours on Saturday, 20 hours on Sunday, another 18-or so on Monday. This is kinda the opposite of the insomnia I've experience for most of the last several weeks. Still, it's not like I wake up refreshed and ready to tackle to day, though. That's what's crazy about this kind of tired. You never get over it no matter how much you sleep. Now, you may get to a point you don't need to sleep, but you're still tired. Hard to explain.
Unsure why but my neck has improved vastly in the last 48 hours. The redness has decreased dramatically, many of the blisters have disappeared and it's just not as sore. No good explanation from the doctors but I'll take it. On the flip side, my mouth is sore as it can be. Yawning really hurts and, of course, with all my fatigue lately I've been doing plenty of yawning.
Jenny's mom is going home today for a week-and-a-half. Getting a well needed break from us, I'm sure, and a chance to get things in order at home for a bit. They're having a Musical presentation dedicated to my Father-In-Law on Sunday. Bill passed away last December so Pat was certainly going to make it down for that. My Brother-In-Law volunteered to be my chauffeur this week so that free'd Pat up to take an extended vacation to her home. She's been a great help, though, so we'll be glad to have her back when she returns.
Enough for today. In the early going it feels like I might be able to stay awake more than a few hours today so maybe I'll be a quasi-productive member of the household for a day. We'll see.
Last weekend wasn't quite the respit I'd experienced in previous off-weeks. I never really got to feeling that great. I was very tired -- sleepy and energy level -- and just never got going. I did head down to see mom at the Hospital for a while Sunday morning but had to wear a medical mask the whole time and was given a special back-door access so I entered the I.C.U. right next to mom's room rather than have to walk through the whole unit to get to her.
Mom's making progress, slow but sure. Off the ventilator and they're able to begin other tests to see what's going on. I think results are back on most of those tests today.
Unrelated to the I.C.U. visit because it started while I was there, I came down with a low-grade, 100.8 fever on Sunday. Had that all day but it broke during the night, leaving me drenched in sweat in bed about 3:00 in the morning.
Good news of late, though, I've been sleeping like a mad-man. About 15 hours on Saturday, 20 hours on Sunday, another 18-or so on Monday. This is kinda the opposite of the insomnia I've experience for most of the last several weeks. Still, it's not like I wake up refreshed and ready to tackle to day, though. That's what's crazy about this kind of tired. You never get over it no matter how much you sleep. Now, you may get to a point you don't need to sleep, but you're still tired. Hard to explain.
Unsure why but my neck has improved vastly in the last 48 hours. The redness has decreased dramatically, many of the blisters have disappeared and it's just not as sore. No good explanation from the doctors but I'll take it. On the flip side, my mouth is sore as it can be. Yawning really hurts and, of course, with all my fatigue lately I've been doing plenty of yawning.
Jenny's mom is going home today for a week-and-a-half. Getting a well needed break from us, I'm sure, and a chance to get things in order at home for a bit. They're having a Musical presentation dedicated to my Father-In-Law on Sunday. Bill passed away last December so Pat was certainly going to make it down for that. My Brother-In-Law volunteered to be my chauffeur this week so that free'd Pat up to take an extended vacation to her home. She's been a great help, though, so we'll be glad to have her back when she returns.
Enough for today. In the early going it feels like I might be able to stay awake more than a few hours today so maybe I'll be a quasi-productive member of the household for a day. We'll see.
Friday, November 14, 2008
Slow Week
Friday of my third off-week now. This hasn't been the same routine as my previous two off-weeks.
Monday and Tuesday I think I felt better then I felt on Monday and Tuesday of the previous two cycles. I was pumped, expecting to be ready to run a marathon by the end of the week. However, by late Tuesday or early Wednesday, some of the Radiation effects were kicking in. I have sores inside my nose that, as silly as it sounds, are making me crazy. They hurt and I get nosebleeds several times a day. My neck is getting blistery and is sore to go along with it. Mouth sores are the worst they've been with my tongue looking pretty gross. And my throat is WAY sore. It feels like I'm swallowing glass any time I swallow anything -- Saliva, Water, whatever.
To go along with all this, the whole dry mouth, thick saliva thing is kicking in, amplifying the difficulty swallowing problem. You know how every once in a while you accidentally inhale something wrong and some saliva gets into your windpipe and you gag, perceiving that you're going to die? That happens eight or ten times a day. The other night I had a really good episode in the middle of the night. Scared me and Jenny to death.
I had my weekly appointment with the Nurse Practitioner at the Oncologist's office Thursday. I was really expecting (hoping) her to tell me that the sore throat was, again, the result of a virus or infection that she could treat and make it go away. No go. She said this was all just par for the course. Her treatment suggestion was to increase the pain medication.
I mentioned my hands a while back. They continue to hurt -- good days and bad. Over the course of the last week or so I've peeled a layer, at least, of skin off my palms and fingers. But on bad days I have trouble buttoning my shirt or opening a prescription bottle.
On top of this, my sleep problems have resurfaced. The last few nights I've been waking up about 2:00 or 3:00 in the morning. A little snoozing in the recliner between there and morning, but not real sleep and it's catching up with me.
I've been kinda hoarse for quite a while now but, today, my voice is completely gone. I can whisper but that's it.
A summary, then? Very tired, sore throat, thick disgusting saliva, blistery neck, sore/bleeding nose and painful hands. Not quite the rosy picture I painted about the weekend at the end of my two previous off-weeks. I'm a little disappointed but, as I keep telling Jenny, as crappy as I feel, I don't feel as crappy as I THOUGHT I was going to feel by now back when this all started. So I'm better off than I thought I was going to be -- a big positive.
On the fine dining front, I'm getting my nutrition exclusively from my feeding tube now. I still eat Jello but nothing else. It hurts to eat but, more than that, everything tastes bad. Metallic. I don't know why Jello still tastes OK but I'll take it. Pretty much one batch per day. Jenny and I are going to dinner tonight with Liz and Keith. This will be our first time out for quite a while and our first time period since I quit eating. Should be an interesting experience.
And don't take this wrong, my overall body feels pretty decent other than fatigue. The pain is localized. I've been able to get a fair amount of work done from home this week. I have to work in a nap here and there, of course, but I've felt a little more productive this week.
So, I've painted a bit of a negative picture today. Sorry. Three weeks from today I'll be receiving my last Radiation Treatments, getting ready to go in and get my 5FU pump off the next morning for the last time. Not really that far away, is it?
Monday and Tuesday I think I felt better then I felt on Monday and Tuesday of the previous two cycles. I was pumped, expecting to be ready to run a marathon by the end of the week. However, by late Tuesday or early Wednesday, some of the Radiation effects were kicking in. I have sores inside my nose that, as silly as it sounds, are making me crazy. They hurt and I get nosebleeds several times a day. My neck is getting blistery and is sore to go along with it. Mouth sores are the worst they've been with my tongue looking pretty gross. And my throat is WAY sore. It feels like I'm swallowing glass any time I swallow anything -- Saliva, Water, whatever.
To go along with all this, the whole dry mouth, thick saliva thing is kicking in, amplifying the difficulty swallowing problem. You know how every once in a while you accidentally inhale something wrong and some saliva gets into your windpipe and you gag, perceiving that you're going to die? That happens eight or ten times a day. The other night I had a really good episode in the middle of the night. Scared me and Jenny to death.
I had my weekly appointment with the Nurse Practitioner at the Oncologist's office Thursday. I was really expecting (hoping) her to tell me that the sore throat was, again, the result of a virus or infection that she could treat and make it go away. No go. She said this was all just par for the course. Her treatment suggestion was to increase the pain medication.
I mentioned my hands a while back. They continue to hurt -- good days and bad. Over the course of the last week or so I've peeled a layer, at least, of skin off my palms and fingers. But on bad days I have trouble buttoning my shirt or opening a prescription bottle.
On top of this, my sleep problems have resurfaced. The last few nights I've been waking up about 2:00 or 3:00 in the morning. A little snoozing in the recliner between there and morning, but not real sleep and it's catching up with me.
I've been kinda hoarse for quite a while now but, today, my voice is completely gone. I can whisper but that's it.
A summary, then? Very tired, sore throat, thick disgusting saliva, blistery neck, sore/bleeding nose and painful hands. Not quite the rosy picture I painted about the weekend at the end of my two previous off-weeks. I'm a little disappointed but, as I keep telling Jenny, as crappy as I feel, I don't feel as crappy as I THOUGHT I was going to feel by now back when this all started. So I'm better off than I thought I was going to be -- a big positive.
On the fine dining front, I'm getting my nutrition exclusively from my feeding tube now. I still eat Jello but nothing else. It hurts to eat but, more than that, everything tastes bad. Metallic. I don't know why Jello still tastes OK but I'll take it. Pretty much one batch per day. Jenny and I are going to dinner tonight with Liz and Keith. This will be our first time out for quite a while and our first time period since I quit eating. Should be an interesting experience.
And don't take this wrong, my overall body feels pretty decent other than fatigue. The pain is localized. I've been able to get a fair amount of work done from home this week. I have to work in a nap here and there, of course, but I've felt a little more productive this week.
So, I've painted a bit of a negative picture today. Sorry. Three weeks from today I'll be receiving my last Radiation Treatments, getting ready to go in and get my 5FU pump off the next morning for the last time. Not really that far away, is it?
Monday, November 10, 2008
Three Weeks Down
My posts seem to be getting more and more spread out. Not sure why that is.
As I said in my last post, the Chemo drugs kicked in last Wednesday afternoon right on schedule. Thursday was a rough day but, without the infections and other stuff I had going on the previous cycle, not quite as bad as the previous cycle. Friday was pretty bad, period, though. Just flat out sick as a dog. I did my best to sleep away the second half of the week, sleeping about 18 hours a day -- literally -- but Friday didn't work out as well.
I pretty much just sat in my recliner and stared at the ceiling, hoping to avoid vomiting. That worked most of the day but not all.
Saturday morning brought new hope because I got to get my 5FU pump off. Not sure if it's in my head or what, but I start feeling better on Saturday morning even before I got the pump off. And once it's off and I'm suddenly free of that Damn thing, I really feel better like right away. It's crazy.
So, overall body-wise, Saturday afternoon, Sunday and, so far today, have been non-bad days. Jenny and I went with Ed and Julie yesterday to scout out some alternative living facilities for my parents and one facility tour was more than I could handle. I wound up sitting in their reception area while the other finished the tour and fell asleep. So yes, I didn't feel horrible but I'm certainly still in the pretty low energy category.
Saturday and Sunday nights didn't bring much sleep. Looks like it's feast or famine on the sleep front. So I'm tired today to go along with my mild wierd-feeling stomach. My mouth/throat continue to be sore and my neck just keeps getting redder and redder and, along with it, more and more sore. Of course, the parts that have already dried up and are peeling -- like a bad sunburn -- itch like crazy so Jenny has a full-time job trying to keep me from scratching.
And last for my whining today, my hands have decided to experience the "less likely" side effect from the chemo drugs. The skin on my hands is getting red, sore, cracking and peeling. I think I had mentioned this a week or so ago but it's gotten much worse. It's getting difficult to button a shirt, take the lid off a prescription bottle, etc. It FEELS like I should be able to put lotion on and that would solve the problem, but this is an inside-out problem and the lotion does little to help.
So, with all my downer info out of the way, we can enjoy a few upbeat stats. I just completed my third of five weeks of treatment. 60% done as far as the treatments themselves go. Today -- Monday -- marks the 37th calendar day from the start of my treatment back on Oct 6th. I get my 5FU Pump off for the last time on Saturday, December 6th -- 63 days after the start of treatment. So I'm 59% of the way through the calendar days from start to finish, but that number keeps going up each day.
Point is, I'm over the hump and I'm on the downhill side now.
Can anyone tell I'm an Anal-Retentive Engineer?
As I said in my last post, the Chemo drugs kicked in last Wednesday afternoon right on schedule. Thursday was a rough day but, without the infections and other stuff I had going on the previous cycle, not quite as bad as the previous cycle. Friday was pretty bad, period, though. Just flat out sick as a dog. I did my best to sleep away the second half of the week, sleeping about 18 hours a day -- literally -- but Friday didn't work out as well.
I pretty much just sat in my recliner and stared at the ceiling, hoping to avoid vomiting. That worked most of the day but not all.
Saturday morning brought new hope because I got to get my 5FU pump off. Not sure if it's in my head or what, but I start feeling better on Saturday morning even before I got the pump off. And once it's off and I'm suddenly free of that Damn thing, I really feel better like right away. It's crazy.
So, overall body-wise, Saturday afternoon, Sunday and, so far today, have been non-bad days. Jenny and I went with Ed and Julie yesterday to scout out some alternative living facilities for my parents and one facility tour was more than I could handle. I wound up sitting in their reception area while the other finished the tour and fell asleep. So yes, I didn't feel horrible but I'm certainly still in the pretty low energy category.
Saturday and Sunday nights didn't bring much sleep. Looks like it's feast or famine on the sleep front. So I'm tired today to go along with my mild wierd-feeling stomach. My mouth/throat continue to be sore and my neck just keeps getting redder and redder and, along with it, more and more sore. Of course, the parts that have already dried up and are peeling -- like a bad sunburn -- itch like crazy so Jenny has a full-time job trying to keep me from scratching.
And last for my whining today, my hands have decided to experience the "less likely" side effect from the chemo drugs. The skin on my hands is getting red, sore, cracking and peeling. I think I had mentioned this a week or so ago but it's gotten much worse. It's getting difficult to button a shirt, take the lid off a prescription bottle, etc. It FEELS like I should be able to put lotion on and that would solve the problem, but this is an inside-out problem and the lotion does little to help.
So, with all my downer info out of the way, we can enjoy a few upbeat stats. I just completed my third of five weeks of treatment. 60% done as far as the treatments themselves go. Today -- Monday -- marks the 37th calendar day from the start of my treatment back on Oct 6th. I get my 5FU Pump off for the last time on Saturday, December 6th -- 63 days after the start of treatment. So I'm 59% of the way through the calendar days from start to finish, but that number keeps going up each day.
Point is, I'm over the hump and I'm on the downhill side now.
Can anyone tell I'm an Anal-Retentive Engineer?
Thursday, November 6, 2008
You could set your clock . . .
Monday and Tuesday went OK this week. I had to get all my Chemo Stuff Monday so it was a pretty full day, but I felt reasonably not bad both days. Wednesday started out that same way but, like clock work, about 2:00 Wednesday afternoon the drugs kicked in and I started feeling like doo-doo.
I went down to my afternoon radiation treatment -- now changed to 3:45 instead of my old 5:00 time -- then came home and crashed. From 5:00 until 11:00 I was out. Jenny said she tried to wake me a few times to take my meds and go to bed, but I just kept going back to sleep. About 11:00, though, she finally succeeded. I did my normal routine to take all my drugs, take care of my teeth, and take care of the skin on my neck. But then I was out like a light again. Woke up about 3:45 and thought I was up for the night but somehow fell asleep again until Emily got up at 5:45.
Frankly I wouldn't mind sleeping away these bad days. So far I'm still awake today, though. Haven't been able to sleep this one away yet.
I went down to my afternoon radiation treatment -- now changed to 3:45 instead of my old 5:00 time -- then came home and crashed. From 5:00 until 11:00 I was out. Jenny said she tried to wake me a few times to take my meds and go to bed, but I just kept going back to sleep. About 11:00, though, she finally succeeded. I did my normal routine to take all my drugs, take care of my teeth, and take care of the skin on my neck. But then I was out like a light again. Woke up about 3:45 and thought I was up for the night but somehow fell asleep again until Emily got up at 5:45.
Frankly I wouldn't mind sleeping away these bad days. So far I'm still awake today, though. Haven't been able to sleep this one away yet.
Sunday, November 2, 2008
Week 3 Begins Tonight
Sunday night I get to start the 3rd of my five treatment weeks. Going into this third week I've had a relatively good weekend. I'm not sleeping again (despite my Ambien), my neck hurts, my hands hurt, my mouth and throat hurt, I'm generally tired all the time and I get pretty well exhausted if I do much of anything. But none of those are as bad as they were a week ago, I don't have a fever, I'm not nauseous at all and, my general, overall body feels relatively OK. Shoot, Ben-Jammin, I might even try a Cartwheel or two this afternoon.
I know that with my 3rd week of treatment this isn't going to last that long, but I've enjoyed the short respite nonetheless. I got a little carried away and tried some Graham Crackers and Milk. One of my favs for a long time. It went down OK from a pain standpoint if I soaked them really well, but the taste just wasn't there. They tasted metallic and I only got down one cracker before I gave up.
I am curious, though. I got some new "suppliment" that's designed specifically for a feeding tube. And it's Vanilla flavored. Why? I suppose it doesn't say you CAN'T drink it, but I'll tell you what, I ain't gonna taste it.
Questions for the Radiation Doc at Monday's appointment. The effects on my skin have been pretty much as they said they would be. Maybe a little sooner than expected, but not THAT different. But the AREA effected is much bigger than expected and, I think, much bigger than they told us it would be. So we'll talk Monday and I'll report back Monday evening. In the meantime, I'm going to enjoy the nice weather and live pretty high today. Shoot, I might even get crazy and go for a drive with Jenny or something "out there" like that.
I know that with my 3rd week of treatment this isn't going to last that long, but I've enjoyed the short respite nonetheless. I got a little carried away and tried some Graham Crackers and Milk. One of my favs for a long time. It went down OK from a pain standpoint if I soaked them really well, but the taste just wasn't there. They tasted metallic and I only got down one cracker before I gave up.
I am curious, though. I got some new "suppliment" that's designed specifically for a feeding tube. And it's Vanilla flavored. Why? I suppose it doesn't say you CAN'T drink it, but I'll tell you what, I ain't gonna taste it.
Questions for the Radiation Doc at Monday's appointment. The effects on my skin have been pretty much as they said they would be. Maybe a little sooner than expected, but not THAT different. But the AREA effected is much bigger than expected and, I think, much bigger than they told us it would be. So we'll talk Monday and I'll report back Monday evening. In the meantime, I'm going to enjoy the nice weather and live pretty high today. Shoot, I might even get crazy and go for a drive with Jenny or something "out there" like that.
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