We just got back from the airport and put the luggage away. but my daughter is back home again!
Thursday, October 4, 2007
Yesterday; Miercoles, Oct. 3!
Let’s start with the three hours of sleep, or thereabouts, that I got due to the side effects of my Dexamethasone, a steroid to reduce my edema. But I’ve operated on less sleep before. And I figured I could catch a nap or two in “The Chair” hooked up to their pump.
I was attended by Nurse “S.” Now you know that something is up when I won’t give her name. As I asked Kris yesterday, “What do they call the worst graduating student from “doctor school?” That’s simple; they still call him Doctor!
That can happen with nurses as well, but Nurse “S” wasn’t quite that bad.
Although she is quite personable, watching her I wasn’t impressed with her technique. And as the recipient of her technique I was less impressed. I’ve had several hookups to my implanted port that have all happened with virtually no sensation for the needle stick after the “freezing spray” which numbs the area. As you might imagine, the needle for the port is a rather large gauge and makes a big hole. So she stuck me in a spot different than the white spot generated by the cold spray and complained that I moved. So, as you can imagine, after expecting no pain, I moved, but only after I felt the unexpected pain.
While she was off getting another needle set, I adjusted my position on the chair so I couldn’t move even if she didn’t use the spray. When she got back she made adjustments to make that more of a certainty. It still hurt.
And, she forgot that I’d be hooked up to a portable pump later. The needle set for the portable pump has “wings” allowing for taping points to secure the needle in the port. Rather than go through all the fuss with placing another needle set, all she did was place a thin membrane bandage over the needle area. I’ve listened to the crinkle of the bandage all day and part of the night, as it has loosened on top, which will allow the access of water when I shower and has allowed the tipping of the needle in the pot.
I expect better service than that.
She withdrew the necessary blood for the lab work, leaving me alone while they waited for the lab work.
Did I mention that I’d had only about 3 hours of sleep the night before?
Nurse Dawn showed up a bit later and requested that we go across the hall to the consultation rooms. I asked why and she responded that she needed to get some info from me. I wasn’t thinking that this was a prelude to the doctor’s visit so I didn’t bring my supporting paperwork with me. Luckily I had my questions loaded into my iPAQ, my PDA, in my shirt pocket. Even though we only got part way through my first question.
The nurse and I did what we needed to do, and then I waited for the doctor. We went through what he needed and then we got to my concerns. First on my list was my pain meds. Go figure.
Now, I had been surprised, considering what I had been hearing from the other oncologists, when Nurse Dawn had said that I could only take 8 PCs per day despite what the label directions on my meds say.
Even so, I was still more surprised when this oncologist said the same thing.
I told the doctor that the elixir I had been originally prescribed was a combo of 7.5 mg hydrocodone / 500 mg acetaminophen, but the pills, issued under his direction, had lowered the hydrocodone to 5.0 mg with no reduction in acetaminophen.
I tried to explain to him that acetaminophen has little effect on me. I’ve had two prescriptions for Tylenol #3 w/ codeine in my dresser drawer until recently, one from the mid 80s and another from the mid 90s, which I simply hadn’t taken because they never seemed to work for me. I’d never known what all the fuss was about with that drug. I kept them around in case I had some really bad pain so I could actually try them out.
I also brought up the issue of my right upper quadrant pain as possibly being the result of all the acetaminophen.
And I brought up the issue of the recent onset of pain from old Workmen’s Comp injuries that my PC doesn’t seem to alleviate at all; my right lower back which was injured two years ago which now involves the tendons at the top of the hip as well; my left hip joint injured in my dispute in 2004 with that Ottawa spotting truck; and a relatively new pain, this year, anyway, in the right ankle unrelated to any injury.
All the right side pain has actually caused me to occasionally rely on the cane given to me by Kris. It didn’t “fit” her; but it seems to work well for me. Thanks, again, Kris!
That’s when he, the doctor, BLEW MY MIND! He told me to discontinue my PC, the hydrocodone/acetaminophen, and to start taking aspirin. ASPIRIN!!!
Oh, he modified his statement to include ibuprofen, naproxen sodium, and the like. Whatever NSAIDS I wanted to take.
Now, because of the short time we have had together and the medical history he didn’t get, he wasn’t aware that my stomach pain that I characterized as “gastritis” before we found out that was cancer, I believed to be started, or at least exacerbated, by the naproxen sodium prescribed by a POS (Prevea Orthopedic Surgeon, and yes, I picked those initials on purpose; I didn’t stutter.) for a Workman’s Comp injury to my right shoulder. I injured my shoulder; he took x-rays, found a bone spur, and wanted to operate, RIGHT AWAY, to remove it. Oh, he’d also check the rotator cuff while he was in the shoulder.
Now, the shoulder hadn’t hurt before the injury, and after shifting the pain around for awhile due to the change in my work efforts and the physical therapy, the pain eventually went away. My point is I disagreed with a doctor’s desire to use his “hammer” to take care of a problem that probably didn’t need the use of a hammer.
And, I didn’t do my homework on the meds he prescribed, so I developed an NSAID stomach reaction.
So, since it has been on my mind, I asked about the use of spices and the extracts of spices, specifically the spice turmeric, the extract curcumin, and a brand called Curamin that contains curcumins and other ingredients, which have excellent pain and anti-inflammation properties without the side effects of NSAIDS. One double blind study had curcumin matching the effects of cortisone, a steroid!
Silly me; I asked this of a doctor whom I had to fight to allow me to take Vitamin C. He blew me off.
Now, following the doctor’s regime STRICTLY, I have only a one in four chance of seeing the next five years. He’s only interested in me following his rules for a one in four chance of living to see 60; I’m interested in doing whatever it takes to stay alive longer. I’d like to better those odds. Now, I’ll work with him as much as possible, but some things have got to change.
Now, tell me this. Why, if aspirin would have worked in the first place, did they prescribe PC for me? If it wouldn’t work then, and we need to change the acetaminophen levels now, why do we want to use aspirin?
I tried to set up an appointment with my PCP (primary care physician) but the earliest they could schedule me in was in three weeks. I asked them to see if they could get me in sooner. I haven’t heard back yet. As soon as this gets posted I’ll try calling again.
Now, you’ll have to forgive me for my attitude. My work experience and education has been in Quality Management, which usually includes customer service. I’m extremely critical of customer service issues. But with the medical profession, there is a paradigm shift; we aren’t “customers,” we’re “patients.” A science fiction author, Philip K. Dick, said, “"The basic tool for the manipulation of reality is the manipulation of words. If you can control the meaning of words, you can control the people who must use the words."
This is how they manipulate us, by manipulating the usage of the language. Oh, we, or our agents, still pay for their services, but they get to decide the level of acceptable behavior. And our “agents,” our companies and their insurance companies, make it hard for us to shop around for better service.
Look at the word "patient;" what’s it mean? Someone is a doctor’s care, right? But it also means able to “wait or endure calmly or to be persevering.” Something a person in pain shouldn’t have to do. Notice how they do that?
Now, what does the word customer mean when it comes to expecting service from a doctor? Notice the difference?
Right now, I’m associated with a place that took two months to get an appointment with my PCP, when my company changed insurance carriers, even though I was sick at the time with my “gastritis” because I was a new patient (it’s their rules); where I saw another of their doctors, on an emergency basis, for my “gastritis” (cancer) and was only prescribed Prilosec OTC; where I later had an EGD with six biopsies taken and they lost the biopsies and had to repeat (for free, at least) the EGD; and the list continues to go on today.
As sister Cuz would say, “Grrrrrrr.”
Last night I slept well until 2:00AM again. Took my scheduled meds and tried to get back to sleep.
One of the side effects of one of my chemotherapy drugs is the hiccups which manifested themselves last night after my 2AM meds. When I hiccup I sometimes ingest air into the stomach causing gas pressure on the top of the stomach.
Now, this is an old complaint for me, but one that caused a lot of problems until I figured out what was happening. It first started early in my marriage. I would get anxiety attacks and since they were manifesting themselves during the time period we were undergoing counseling, they caused some problems in the marriage.
I saw doctors for the anxiety attacks, had a battery of tests, and the doctors couldn’t figure it out. Therefore, it was perceived as a “mental condition.” Later, I found out different.
Due to the ingestion of carbonated sodas, and other sources of digestive gas, I would generate gas pressure in the stomach. Usually, I could get rid of it, but not always. When I couldn’t, or before I could get rid of it, the gas would press on a certain “magic” spot on the upper stomach, which would press on a nerve—the Vagus nerve, I believe—which would then cause heart palpitations. These would in turn would cause the release of adrenaline, causing an anxiety attack. Sounds complicated, but can happen very quickly.
Once I realized what was happening, I could actually short circuit the process, stopping or at least curtailing the adrenaline release. Then I would make a special effort to “express” the gas.
Well, it seems that the situation is happening again. I’m not getting to the adrenaline stage due to my previous experience in the 70s, but it is still alarming when it happens, especially when you’re not aware of the gas.
It happened as Nurse “S” was disconnecting me from the Clinic pump and hooking up my personal pump. Now, I wasn’t aware of the gas build up, but I noticed the heart fluctuations. Since I was watching with dismay the air in the plastic tubing going into my body—“Oh it would take a garden hose of air to cause problems…”—it still was disturbing when I have air going into my veins and my heart start to act up. Once I felt the gas pressure, I knew what the problem was and put a clamp on the anxiety and waited for the opportunity to get rid of the gas.
So, it wasn’t much of a surprise when it started happening overnight. That’s happened before with this “gastritis” episode. What is means is that I can’t sleep in a position where the gas presses upon that “magic” spot; the palpitations will wake me up. Usually I sit up, try to express the gas, and after expressing it, lay back down and go to sleep. The placement of the tumor makes the expression difficult at night sometimes, like last night.
The other thing that helps is when I change positions, when I sleep on my other side. Except I now have a “tether” that makes waking up enough to do some critical thinking necessary for changing positions; rerouting the hose, etc. Then it's hard to get back to sleep.
So, again, I didn’t get much sleep after 2:00AM. Again, I’m going to be tired all day, wanting to sleep, and knowing I should save it all up for nighttime.
Some other notes, as long as I’m here.
My daughter gets in tonight at 8:49PM. I’m looking forward to picking her up at the airport. As I mentioned in an earlier comment, I have some concerns wearing my personal chemotherapy pump into an airport.
I recently mentioned to Robin a quote by Gerald Massey that goes like this, “They must find it difficult.... Those who have taken authority as the truth, rather than truth as authority.” But, as Pontius Pilate asked, “What is truth?” It’s usually easier to determine authority than it is to determine truth.
To that end, I obtained a “prescription” from an "authority" for my pump. Now, if I can only get it out of my pocket without being shot for carrying a “mock explosive device.”
Cuz, I did find the slippery elm lozenges, but haven’t had the opportunity to try them yet. I did find another product that works well for dry mouth called Rain, at the health food store, ~$12. I tried Salivart for the same issue from Shopko at the same price but it doesn’t work well at all. The “Rain” contains xylitol, which is a type of sugar with five carbon atoms instead of the six found in sucrose. It seems to help.
And I’m doing the saline mouthwash for the mouth issues.
I’m taking a diuretic for the edema, but it depletes the potassium in my body. So they prescribed a potassium supplement. Talk about a “horse pill!” Luckily it can be crushed; it made my yogurt crunchy, this morning.
I apologize for the length of this “Brain Dump” as Robin calls them. As Marcus T. Cicero once said, "If I had more time, I would have written a shorter letter." And I have been going back and editing this somewhat.
And did I mention my lack of sleep?
Thanks for putting up with all this. And I’ll try to catch up on my email later today.
I was attended by Nurse “S.” Now you know that something is up when I won’t give her name. As I asked Kris yesterday, “What do they call the worst graduating student from “doctor school?” That’s simple; they still call him Doctor!
That can happen with nurses as well, but Nurse “S” wasn’t quite that bad.
Although she is quite personable, watching her I wasn’t impressed with her technique. And as the recipient of her technique I was less impressed. I’ve had several hookups to my implanted port that have all happened with virtually no sensation for the needle stick after the “freezing spray” which numbs the area. As you might imagine, the needle for the port is a rather large gauge and makes a big hole. So she stuck me in a spot different than the white spot generated by the cold spray and complained that I moved. So, as you can imagine, after expecting no pain, I moved, but only after I felt the unexpected pain.
While she was off getting another needle set, I adjusted my position on the chair so I couldn’t move even if she didn’t use the spray. When she got back she made adjustments to make that more of a certainty. It still hurt.
And, she forgot that I’d be hooked up to a portable pump later. The needle set for the portable pump has “wings” allowing for taping points to secure the needle in the port. Rather than go through all the fuss with placing another needle set, all she did was place a thin membrane bandage over the needle area. I’ve listened to the crinkle of the bandage all day and part of the night, as it has loosened on top, which will allow the access of water when I shower and has allowed the tipping of the needle in the pot.
I expect better service than that.
She withdrew the necessary blood for the lab work, leaving me alone while they waited for the lab work.
Did I mention that I’d had only about 3 hours of sleep the night before?
Nurse Dawn showed up a bit later and requested that we go across the hall to the consultation rooms. I asked why and she responded that she needed to get some info from me. I wasn’t thinking that this was a prelude to the doctor’s visit so I didn’t bring my supporting paperwork with me. Luckily I had my questions loaded into my iPAQ, my PDA, in my shirt pocket. Even though we only got part way through my first question.
The nurse and I did what we needed to do, and then I waited for the doctor. We went through what he needed and then we got to my concerns. First on my list was my pain meds. Go figure.
Now, I had been surprised, considering what I had been hearing from the other oncologists, when Nurse Dawn had said that I could only take 8 PCs per day despite what the label directions on my meds say.
Even so, I was still more surprised when this oncologist said the same thing.
I told the doctor that the elixir I had been originally prescribed was a combo of 7.5 mg hydrocodone / 500 mg acetaminophen, but the pills, issued under his direction, had lowered the hydrocodone to 5.0 mg with no reduction in acetaminophen.
I tried to explain to him that acetaminophen has little effect on me. I’ve had two prescriptions for Tylenol #3 w/ codeine in my dresser drawer until recently, one from the mid 80s and another from the mid 90s, which I simply hadn’t taken because they never seemed to work for me. I’d never known what all the fuss was about with that drug. I kept them around in case I had some really bad pain so I could actually try them out.
I also brought up the issue of my right upper quadrant pain as possibly being the result of all the acetaminophen.
And I brought up the issue of the recent onset of pain from old Workmen’s Comp injuries that my PC doesn’t seem to alleviate at all; my right lower back which was injured two years ago which now involves the tendons at the top of the hip as well; my left hip joint injured in my dispute in 2004 with that Ottawa spotting truck; and a relatively new pain, this year, anyway, in the right ankle unrelated to any injury.
All the right side pain has actually caused me to occasionally rely on the cane given to me by Kris. It didn’t “fit” her; but it seems to work well for me. Thanks, again, Kris!
That’s when he, the doctor, BLEW MY MIND! He told me to discontinue my PC, the hydrocodone/acetaminophen, and to start taking aspirin. ASPIRIN!!!
Oh, he modified his statement to include ibuprofen, naproxen sodium, and the like. Whatever NSAIDS I wanted to take.
Now, because of the short time we have had together and the medical history he didn’t get, he wasn’t aware that my stomach pain that I characterized as “gastritis” before we found out that was cancer, I believed to be started, or at least exacerbated, by the naproxen sodium prescribed by a POS (Prevea Orthopedic Surgeon, and yes, I picked those initials on purpose; I didn’t stutter.) for a Workman’s Comp injury to my right shoulder. I injured my shoulder; he took x-rays, found a bone spur, and wanted to operate, RIGHT AWAY, to remove it. Oh, he’d also check the rotator cuff while he was in the shoulder.
Now, the shoulder hadn’t hurt before the injury, and after shifting the pain around for awhile due to the change in my work efforts and the physical therapy, the pain eventually went away. My point is I disagreed with a doctor’s desire to use his “hammer” to take care of a problem that probably didn’t need the use of a hammer.
And, I didn’t do my homework on the meds he prescribed, so I developed an NSAID stomach reaction.
So, since it has been on my mind, I asked about the use of spices and the extracts of spices, specifically the spice turmeric, the extract curcumin, and a brand called Curamin that contains curcumins and other ingredients, which have excellent pain and anti-inflammation properties without the side effects of NSAIDS. One double blind study had curcumin matching the effects of cortisone, a steroid!
Silly me; I asked this of a doctor whom I had to fight to allow me to take Vitamin C. He blew me off.
Now, following the doctor’s regime STRICTLY, I have only a one in four chance of seeing the next five years. He’s only interested in me following his rules for a one in four chance of living to see 60; I’m interested in doing whatever it takes to stay alive longer. I’d like to better those odds. Now, I’ll work with him as much as possible, but some things have got to change.
Now, tell me this. Why, if aspirin would have worked in the first place, did they prescribe PC for me? If it wouldn’t work then, and we need to change the acetaminophen levels now, why do we want to use aspirin?
I tried to set up an appointment with my PCP (primary care physician) but the earliest they could schedule me in was in three weeks. I asked them to see if they could get me in sooner. I haven’t heard back yet. As soon as this gets posted I’ll try calling again.
Now, you’ll have to forgive me for my attitude. My work experience and education has been in Quality Management, which usually includes customer service. I’m extremely critical of customer service issues. But with the medical profession, there is a paradigm shift; we aren’t “customers,” we’re “patients.” A science fiction author, Philip K. Dick, said, “"The basic tool for the manipulation of reality is the manipulation of words. If you can control the meaning of words, you can control the people who must use the words."
This is how they manipulate us, by manipulating the usage of the language. Oh, we, or our agents, still pay for their services, but they get to decide the level of acceptable behavior. And our “agents,” our companies and their insurance companies, make it hard for us to shop around for better service.
Look at the word "patient;" what’s it mean? Someone is a doctor’s care, right? But it also means able to “wait or endure calmly or to be persevering.” Something a person in pain shouldn’t have to do. Notice how they do that?
Now, what does the word customer mean when it comes to expecting service from a doctor? Notice the difference?
Right now, I’m associated with a place that took two months to get an appointment with my PCP, when my company changed insurance carriers, even though I was sick at the time with my “gastritis” because I was a new patient (it’s their rules); where I saw another of their doctors, on an emergency basis, for my “gastritis” (cancer) and was only prescribed Prilosec OTC; where I later had an EGD with six biopsies taken and they lost the biopsies and had to repeat (for free, at least) the EGD; and the list continues to go on today.
As sister Cuz would say, “Grrrrrrr.”
Last night I slept well until 2:00AM again. Took my scheduled meds and tried to get back to sleep.
One of the side effects of one of my chemotherapy drugs is the hiccups which manifested themselves last night after my 2AM meds. When I hiccup I sometimes ingest air into the stomach causing gas pressure on the top of the stomach.
Now, this is an old complaint for me, but one that caused a lot of problems until I figured out what was happening. It first started early in my marriage. I would get anxiety attacks and since they were manifesting themselves during the time period we were undergoing counseling, they caused some problems in the marriage.
I saw doctors for the anxiety attacks, had a battery of tests, and the doctors couldn’t figure it out. Therefore, it was perceived as a “mental condition.” Later, I found out different.
Due to the ingestion of carbonated sodas, and other sources of digestive gas, I would generate gas pressure in the stomach. Usually, I could get rid of it, but not always. When I couldn’t, or before I could get rid of it, the gas would press on a certain “magic” spot on the upper stomach, which would press on a nerve—the Vagus nerve, I believe—which would then cause heart palpitations. These would in turn would cause the release of adrenaline, causing an anxiety attack. Sounds complicated, but can happen very quickly.
Once I realized what was happening, I could actually short circuit the process, stopping or at least curtailing the adrenaline release. Then I would make a special effort to “express” the gas.
Well, it seems that the situation is happening again. I’m not getting to the adrenaline stage due to my previous experience in the 70s, but it is still alarming when it happens, especially when you’re not aware of the gas.
It happened as Nurse “S” was disconnecting me from the Clinic pump and hooking up my personal pump. Now, I wasn’t aware of the gas build up, but I noticed the heart fluctuations. Since I was watching with dismay the air in the plastic tubing going into my body—“Oh it would take a garden hose of air to cause problems…”—it still was disturbing when I have air going into my veins and my heart start to act up. Once I felt the gas pressure, I knew what the problem was and put a clamp on the anxiety and waited for the opportunity to get rid of the gas.
So, it wasn’t much of a surprise when it started happening overnight. That’s happened before with this “gastritis” episode. What is means is that I can’t sleep in a position where the gas presses upon that “magic” spot; the palpitations will wake me up. Usually I sit up, try to express the gas, and after expressing it, lay back down and go to sleep. The placement of the tumor makes the expression difficult at night sometimes, like last night.
The other thing that helps is when I change positions, when I sleep on my other side. Except I now have a “tether” that makes waking up enough to do some critical thinking necessary for changing positions; rerouting the hose, etc. Then it's hard to get back to sleep.
So, again, I didn’t get much sleep after 2:00AM. Again, I’m going to be tired all day, wanting to sleep, and knowing I should save it all up for nighttime.
Some other notes, as long as I’m here.
My daughter gets in tonight at 8:49PM. I’m looking forward to picking her up at the airport. As I mentioned in an earlier comment, I have some concerns wearing my personal chemotherapy pump into an airport.
I recently mentioned to Robin a quote by Gerald Massey that goes like this, “They must find it difficult.... Those who have taken authority as the truth, rather than truth as authority.” But, as Pontius Pilate asked, “What is truth?” It’s usually easier to determine authority than it is to determine truth.
To that end, I obtained a “prescription” from an "authority" for my pump. Now, if I can only get it out of my pocket without being shot for carrying a “mock explosive device.”
Cuz, I did find the slippery elm lozenges, but haven’t had the opportunity to try them yet. I did find another product that works well for dry mouth called Rain, at the health food store, ~$12. I tried Salivart for the same issue from Shopko at the same price but it doesn’t work well at all. The “Rain” contains xylitol, which is a type of sugar with five carbon atoms instead of the six found in sucrose. It seems to help.
And I’m doing the saline mouthwash for the mouth issues.
I’m taking a diuretic for the edema, but it depletes the potassium in my body. So they prescribed a potassium supplement. Talk about a “horse pill!” Luckily it can be crushed; it made my yogurt crunchy, this morning.
I apologize for the length of this “Brain Dump” as Robin calls them. As Marcus T. Cicero once said, "If I had more time, I would have written a shorter letter." And I have been going back and editing this somewhat.
And did I mention my lack of sleep?
Thanks for putting up with all this. And I’ll try to catch up on my email later today.
Wednesday, October 3, 2007
I Knew It!
And, it’s not your fault, Robin. I just don’t like to have to go get this fight started; I’m a lover not a fighter!
I finally got to sleep about 11:30PM last night. Then, I proceeded to sleep through my 2:00AM alarm. Luckily I had two alarms set. The second one finally woke me up; probably woke Ben up, as well, if he hadn’t gone to bed yet.
Took my meds and tried to fall back asleep. Not gonna happen. So, with pain in the upper right quadrant, I got up to investigate the sounds coming from the kitchen, and to get a bottle of Ensure, hoping that something in the stomach might quell the pain. That’s after the two, count ‘em, two PC at 2:00AM. They should have kicked in by 3:00AM, wouldn’t you think? Maybe they had.
Anyway, I found out that Himmy had tipped over the kitchen garbage can. Must have been the smell of the meat package I threw out last night.
I had purchased some thin steaks, diced them, and stir-fried them with some mushrooms and dark soy sauce for supper. That used to be a favorite meal of mine when I could use some Sriracha sauce, a hot chili sauce, as well. Now it’s relatively bland; I’ll have to see what I can do about that without destroying my stomach.
Eating supper, I thought for a bit that I was going to suffer from an esophageal sphincter spasm again. It had all the earmarks started, but when it hurts that much, you learn quickly. But I let my stomach settle for a few minutes and started eating again, vewy, vewy, carefuwy! Did just fine after that.
Back to 3AM, I went back to bed, and never got back to sleep. OK, maybe about 5:30 I might have dozed off. But the alarm woke me at 6:00AM and I got up to get my day started.
I’m finding that the Dexamethasone might be the drug, a steroid, that has, and probably had, been causing my dry mouth that I had so much trouble with before. I can tell a change in the taste of food as well. My iced tea just doesn’t taste the same.
Anyway, came out to the kitchen and found that Himmy had knocked the recyclable bin and the garbage can over again. Nothing was pulled out. He either wanted to smell what was in there or was just trying to climb up on them. No big deal. It’s just that they're getting to feel at home here and that’s always good, right?
Thanks for the info last night, Kris. I read it before trying to sleep. I think what I’ll do, just to keep the kids up on what’s going on is to put a meds section in my “Sticky” Schedule post when I get home tonight.
Let’s look forward to happy times; tomorrow I get to see my daughter again!!
I finally got to sleep about 11:30PM last night. Then, I proceeded to sleep through my 2:00AM alarm. Luckily I had two alarms set. The second one finally woke me up; probably woke Ben up, as well, if he hadn’t gone to bed yet.
Took my meds and tried to fall back asleep. Not gonna happen. So, with pain in the upper right quadrant, I got up to investigate the sounds coming from the kitchen, and to get a bottle of Ensure, hoping that something in the stomach might quell the pain. That’s after the two, count ‘em, two PC at 2:00AM. They should have kicked in by 3:00AM, wouldn’t you think? Maybe they had.
Anyway, I found out that Himmy had tipped over the kitchen garbage can. Must have been the smell of the meat package I threw out last night.
I had purchased some thin steaks, diced them, and stir-fried them with some mushrooms and dark soy sauce for supper. That used to be a favorite meal of mine when I could use some Sriracha sauce, a hot chili sauce, as well. Now it’s relatively bland; I’ll have to see what I can do about that without destroying my stomach.
Eating supper, I thought for a bit that I was going to suffer from an esophageal sphincter spasm again. It had all the earmarks started, but when it hurts that much, you learn quickly. But I let my stomach settle for a few minutes and started eating again, vewy, vewy, carefuwy! Did just fine after that.
Back to 3AM, I went back to bed, and never got back to sleep. OK, maybe about 5:30 I might have dozed off. But the alarm woke me at 6:00AM and I got up to get my day started.
I’m finding that the Dexamethasone might be the drug, a steroid, that has, and probably had, been causing my dry mouth that I had so much trouble with before. I can tell a change in the taste of food as well. My iced tea just doesn’t taste the same.
Anyway, came out to the kitchen and found that Himmy had knocked the recyclable bin and the garbage can over again. Nothing was pulled out. He either wanted to smell what was in there or was just trying to climb up on them. No big deal. It’s just that they're getting to feel at home here and that’s always good, right?
Thanks for the info last night, Kris. I read it before trying to sleep. I think what I’ll do, just to keep the kids up on what’s going on is to put a meds section in my “Sticky” Schedule post when I get home tonight.
Let’s look forward to happy times; tomorrow I get to see my daughter again!!
Tuesday, October 2, 2007
Bait and Switch Revisited
Just in case you only read the new posts, I’d like to say that late breaking news from yesterday (OK it was early afternoon) was that my October 10 EGD was cancelled. As procedures go, it’s relatively harmless. But it’s the thought that they’re sticking a tube and camera down my throat that bugs me.
AND, I started the use of color in the “’Sticky’ Schedule” to highlight certain dates.
~~~~~~~~~~
My "horrorscope" today made the comment, “Perfection isn't the goal -- happiness is.” I seem to recall someone saying something like this about housework…. :-D
~~~~~~~~~~
Mousebane is loving it here. When the cats first came with Ben to live here, the only time I got to see them was when Ben got up to get ready for work and about 9:30 – 10:00 PM when Ben was expected home. Then they came up and were fairly vocal; it was feeding time, don’tcha know?
Now, Mousebane is waiting for me in the kitchen when I get up. He gets some loving and a good brushing, just a purrin' all the while. I’m using one of my old hairbrushes since I’m not using them!
But he does enjoy it.
~~~~~~~~~~
I had an opportunity to talk to Robin last night, so I seized it. It was nice to talk to her again. I’m sorry to say I can’t remember the last time I did talk to her. That memory is sitting just outside of my grasp right now; I may remember later.
I’ve always enjoyed her “accent” for want of a better term; an Ohio girl living in Utah via California. They say that music hath charms to soothe the savage breast. Well her voice has the same effect for me.
I was able to offer some hopefully helpful advice; only time will tell. But the situation did bring home to me the need I have to explain to all of you what has gone on with me that might help explain me to you. Maybe when you understand what I have to say, a lot of questions you have about me will be answered.
~~~~~~~~~~
Acetaminophen, http://en.wikipedia.org/wiki/Acetaminophen, has very little anti-inflammatory effects, which is probably why it doesn’t usually work well for me at all. I usually have inflammation associated with pain. As a matter of fact, since I started eating again, my joint pain has flared up and either my PC won’t touch it, or the pain is so great that I’d hate to be without my PC right now. I’m betting that the PC just doesn’t touch this type of pain.
Getting back to acetaminophen, in the UK sales are limited to 32 and 16 tablets in pharmacies and non-pharmacy locations respectively because of the chance of liver toxicity. In Ireland it is limited to 24 and 12 tablets respectively.
So, let’s talk toxic doses. “The toxic dose of paracetamol [acetaminophen –HB] is highly variable. In adults, single doses above 10 grams [10000 mg –HB] or 150 mg/kg have a reasonable likelihood of causing toxicity. Toxicity can also occur when multiple smaller doses within 24 hours exceeds these levels, or even with chronic ingestion of doses as low as 4 g [4000 mg –HB]/day, and death with as little as 6 g [6000 mg –HB]/day.”
My current prescription allows me to consume 3 – 8 grams (3000 – 8000 mg) of acetaminophen per day. I am currently taking 3.5 g (3500 mg) per day. That means I experience "chronic ingestion" of 500 mg less than the 4000 mg they mention above.
Diagnosis? “Evidence of liver toxicity may develop in one to four days, although in severe cases it may be evident in 12 hours. Right upper quadrant tenderness may be present.” I may not have right upper quadrant tenderness but I do have right upper quadrant pain. Prior to this I thought it was just the tumor; normal pain for my condition has usually been on the left side and just below the rib cage. Now I’m not so sure.
And, oh yeah, something I didn't know, acetaminophen/ paracetamol is addictive!!!!! “Surprisingly, paracetamol can be physically addictive: the needed dose increases with each administration, and there is a distinct withdrawal syndrome, which resembles the headache for which the drug was first taken, but not exactly.”
So, based on this one article, not only will I need more and more acetaminophen to maintain my "buzz," but I’ll be in pain when I try to quit.
Or am I wrong to be concerned with the doctors prescribing meds that keep me so close to a toxic dose? That I’m dependent on their being alert for any changes in my condition just to keep me alive and well, when the only contact I have with them is that which I initiate. You’ve seen my schedule; doctor appointments are several weeks apart, while liver toxicity can develop in 1 – 4 days! When I can get pain from eating at the wrong time—last night I started to eat ½ hour before taking my pain meds instead of 1 hour after taking my pain meds and it caused me some pain—or because the food was a little too spicy, I’m more likely to ignore it because I think I know, correctly or incorrectly, what the reason for the pain is.
This is why I dislike doctors. Just because they prescribe toxic drugs in the hopes that the chemotherapy kills the cancer before it kills me doesn’t mean that they should do the same with my pain meds.
Or am I out of line on this?
AND, I started the use of color in the “’Sticky’ Schedule” to highlight certain dates.
~~~~~~~~~~
My "horrorscope" today made the comment, “Perfection isn't the goal -- happiness is.” I seem to recall someone saying something like this about housework…. :-D
~~~~~~~~~~
Mousebane is loving it here. When the cats first came with Ben to live here, the only time I got to see them was when Ben got up to get ready for work and about 9:30 – 10:00 PM when Ben was expected home. Then they came up and were fairly vocal; it was feeding time, don’tcha know?
Now, Mousebane is waiting for me in the kitchen when I get up. He gets some loving and a good brushing, just a purrin' all the while. I’m using one of my old hairbrushes since I’m not using them!
But he does enjoy it.
~~~~~~~~~~
I had an opportunity to talk to Robin last night, so I seized it. It was nice to talk to her again. I’m sorry to say I can’t remember the last time I did talk to her. That memory is sitting just outside of my grasp right now; I may remember later.
I’ve always enjoyed her “accent” for want of a better term; an Ohio girl living in Utah via California. They say that music hath charms to soothe the savage breast. Well her voice has the same effect for me.
I was able to offer some hopefully helpful advice; only time will tell. But the situation did bring home to me the need I have to explain to all of you what has gone on with me that might help explain me to you. Maybe when you understand what I have to say, a lot of questions you have about me will be answered.
~~~~~~~~~~
Acetaminophen, http://en.wikipedia.org/wiki/Acetaminophen, has very little anti-inflammatory effects, which is probably why it doesn’t usually work well for me at all. I usually have inflammation associated with pain. As a matter of fact, since I started eating again, my joint pain has flared up and either my PC won’t touch it, or the pain is so great that I’d hate to be without my PC right now. I’m betting that the PC just doesn’t touch this type of pain.
Getting back to acetaminophen, in the UK sales are limited to 32 and 16 tablets in pharmacies and non-pharmacy locations respectively because of the chance of liver toxicity. In Ireland it is limited to 24 and 12 tablets respectively.
So, let’s talk toxic doses. “The toxic dose of paracetamol [acetaminophen –HB] is highly variable. In adults, single doses above 10 grams [10000 mg –HB] or 150 mg/kg have a reasonable likelihood of causing toxicity. Toxicity can also occur when multiple smaller doses within 24 hours exceeds these levels, or even with chronic ingestion of doses as low as 4 g [4000 mg –HB]/day, and death with as little as 6 g [6000 mg –HB]/day.”
My current prescription allows me to consume 3 – 8 grams (3000 – 8000 mg) of acetaminophen per day. I am currently taking 3.5 g (3500 mg) per day. That means I experience "chronic ingestion" of 500 mg less than the 4000 mg they mention above.
Diagnosis? “Evidence of liver toxicity may develop in one to four days, although in severe cases it may be evident in 12 hours. Right upper quadrant tenderness may be present.” I may not have right upper quadrant tenderness but I do have right upper quadrant pain. Prior to this I thought it was just the tumor; normal pain for my condition has usually been on the left side and just below the rib cage. Now I’m not so sure.
And, oh yeah, something I didn't know, acetaminophen/ paracetamol is addictive!!!!! “Surprisingly, paracetamol can be physically addictive: the needed dose increases with each administration, and there is a distinct withdrawal syndrome, which resembles the headache for which the drug was first taken, but not exactly.”
So, based on this one article, not only will I need more and more acetaminophen to maintain my "buzz," but I’ll be in pain when I try to quit.
Or am I wrong to be concerned with the doctors prescribing meds that keep me so close to a toxic dose? That I’m dependent on their being alert for any changes in my condition just to keep me alive and well, when the only contact I have with them is that which I initiate. You’ve seen my schedule; doctor appointments are several weeks apart, while liver toxicity can develop in 1 – 4 days! When I can get pain from eating at the wrong time—last night I started to eat ½ hour before taking my pain meds instead of 1 hour after taking my pain meds and it caused me some pain—or because the food was a little too spicy, I’m more likely to ignore it because I think I know, correctly or incorrectly, what the reason for the pain is.
This is why I dislike doctors. Just because they prescribe toxic drugs in the hopes that the chemotherapy kills the cancer before it kills me doesn’t mean that they should do the same with my pain meds.
Or am I out of line on this?
Monday, October 1, 2007
Bait and Switch
OK, I'm adding this to this post, so I don't forget tomorrow, but the EGD procedure next week has been cancelled until further notice. If I remember, I'll add it tomomorrow as well. To repeat, no more EGDs scheduled!
~~~~~~~~~
In addition to mowing the lawn, I finally took matters in hand and, for the first time in two – three years, washed the outside windows yesterday. So guess what happened last night and today. If you guessed rain, you’d be right. Maybe this should have gone in the “Some Days You’re the Bug” post.
~~~~~~~~~~~~
I stopped by the pharmacy over the weekend to get my next fix of PC. While there, the pharmacist, in addition to asking if I had any questions about my PC asked a bunch of unobtrusive questions about my “condition.” Since I had nothing to hide, and since I have a tendency to trust people with “expertise” (unless I know better), I told him what was going on with me.
But the questions he asked, and the comments he made, started me to wonder what his concerns were. So I did some checking. I found something interesting when I started to read my PC medicine labels.
The liquid form of my medication, the elixir, contained 7.5 mg. Hydrocodone / 500 mg acetaminophen per 15 mls. Label directions for usage were 15 mls every 6 hours as needed, for a maximum usage of 30 mg. Hydrocodone / 2000 mg acetaminophen every day.
Oral directions from my doctor increased the dose to 15 – 30 mls every 4 hours increasing my daily consumption to 45 - 90 mg Hydrocodone / 3000 – 6000 mg acetaminophen.
Now, the FDA has a 24-hour maximum limit for acetaminophen set at 4000 mg. So, the doctor’s orders for the liquid medicine puts me near or over the FDA’s maximum, putting me at risk for hepatotoxicity; severe liver damage!
When I could no longer tolerate the liquid form, I was switched to pill form of the drug. However, while my dosage schedule was increased—I am directed by the label to take 1 – 2 tablets every 3 – 4 hours as needed for pain—the Hydrocodone level was actually reduced to two thirds of the previous level! . Each dose, each tablet, now contains 5 mg Hydrocodone while still containing 500 mg acetaminophen.
That means on this new dosing schedule, my Hydrocodone consumption is reduced to 30 – 80 mg each day while my acetaminophen consumption is increased to 3000 – 8000 mg per day!!!!!! Twice the FDA’s maximum.
Sure, “the doctors are watching my consumption.” Yeah, right!
The Wikipedia article states, “Daily consumption of hydrocodone should not exceed 40 milligrams in patients not tolerant to opiates.” But they also point out that the PDR (Physician’s Desk Reference) makes allowances for higher dosages as long as the side effects do not manifest themselves.
Now, as a pain reliever, acetaminophen doesn’t work well for me at all. Over the years I have had opportunity to obtain prescriptions to Tylenol #3 with codeine. Until recently, I had two prescriptions for the stuff sitting in my dresser drawer; one prescription from 1985. I don’t know what the fuss was all about; it never did that much for me.
Current consumption of my PC puts me right at 35 mg / 3500 mg. One more tablet a day will max me out. Care to guess what one of my questions to my doctor on Wednesday will be?
Edit: Added schedule change!
~~~~~~~~~
In addition to mowing the lawn, I finally took matters in hand and, for the first time in two – three years, washed the outside windows yesterday. So guess what happened last night and today. If you guessed rain, you’d be right. Maybe this should have gone in the “Some Days You’re the Bug” post.
~~~~~~~~~~~~
I stopped by the pharmacy over the weekend to get my next fix of PC. While there, the pharmacist, in addition to asking if I had any questions about my PC asked a bunch of unobtrusive questions about my “condition.” Since I had nothing to hide, and since I have a tendency to trust people with “expertise” (unless I know better), I told him what was going on with me.
But the questions he asked, and the comments he made, started me to wonder what his concerns were. So I did some checking. I found something interesting when I started to read my PC medicine labels.
The liquid form of my medication, the elixir, contained 7.5 mg. Hydrocodone / 500 mg acetaminophen per 15 mls. Label directions for usage were 15 mls every 6 hours as needed, for a maximum usage of 30 mg. Hydrocodone / 2000 mg acetaminophen every day.
Oral directions from my doctor increased the dose to 15 – 30 mls every 4 hours increasing my daily consumption to 45 - 90 mg Hydrocodone / 3000 – 6000 mg acetaminophen.
Now, the FDA has a 24-hour maximum limit for acetaminophen set at 4000 mg. So, the doctor’s orders for the liquid medicine puts me near or over the FDA’s maximum, putting me at risk for hepatotoxicity; severe liver damage!
When I could no longer tolerate the liquid form, I was switched to pill form of the drug. However, while my dosage schedule was increased—I am directed by the label to take 1 – 2 tablets every 3 – 4 hours as needed for pain—the Hydrocodone level was actually reduced to two thirds of the previous level! . Each dose, each tablet, now contains 5 mg Hydrocodone while still containing 500 mg acetaminophen.
That means on this new dosing schedule, my Hydrocodone consumption is reduced to 30 – 80 mg each day while my acetaminophen consumption is increased to 3000 – 8000 mg per day!!!!!! Twice the FDA’s maximum.
Sure, “the doctors are watching my consumption.” Yeah, right!
The Wikipedia article states, “Daily consumption of hydrocodone should not exceed 40 milligrams in patients not tolerant to opiates.” But they also point out that the PDR (Physician’s Desk Reference) makes allowances for higher dosages as long as the side effects do not manifest themselves.
Now, as a pain reliever, acetaminophen doesn’t work well for me at all. Over the years I have had opportunity to obtain prescriptions to Tylenol #3 with codeine. Until recently, I had two prescriptions for the stuff sitting in my dresser drawer; one prescription from 1985. I don’t know what the fuss was all about; it never did that much for me.
Current consumption of my PC puts me right at 35 mg / 3500 mg. One more tablet a day will max me out. Care to guess what one of my questions to my doctor on Wednesday will be?
Edit: Added schedule change!
Sunday, September 30, 2007
Boxes, Boxes, Everywhere!!
Since Ben is staying with me, I don’t feel that it is necessary for me to post early every morning. I’m not sure that it is necessary for me to post every day. What do you think?
~~~~~~~~~~~~
I was 189 this AM; I’m starting to feel like a little piggie. I think that some of my weight gain is water retention; my legs feel somewhat swollen. Then again, maybe it’s that time of the month.
~~~~~~~~~~~
I mowed the lawn today. My goal is to get the lawn as short as possible before the leaves start to fall. That way, the wind will blow the leaves off my lawn and onto the neighbor’s lawn. Since the “neighbor” is the local hospital, their yard crew can mow the leaves into a mulch, for all I care. I won’t have to rake too much at all, then.
~~~~~~~~~~~~~~
We had a scare today. We couldn’t find Himmy! We searched the house high and low; no Himmy.
Since I’d been in and out throughout the day, I thought that maybe I’d let him get out somehow. I was sick!
Ben was looking all over the back yard, going along the hedgerows searching for his cat. Since I needed to pick up some Humpty Dumpty eggs which the local gas station sells, I walked over, got my eggs, and asked if they had seen a cat. They mentioned there was a black one, dead in the road, near the Men’s Mall. But Himmy isn’t black, I thought.
But, with a sinking feeling in my stomach—maybe that was there all along, now that I think about it—I walked over to check out the corpse. Thank God it wasn’t Himmy. So where was Himmy!!
Now, it’s possible that he got caught in one of the rooms upstairs. Although we searched every room, we left the doors open in case he was well hidden and locked in.
But I still felt that he was down stairs.
I was looking everywhere downstairs for the umpteenth time. I got to three empty boxes, stacked one atop the other, when I noticed something amiss with the bottom box. Now you have to understand, this box was only about six inches wider than the two boxes stacked on top of it. But, apparently, it was wide enough. Himmy was hiding (sleeping) inside the bottom box and all I caught was just a glimpse of his cheek.
What a relief to find him! I thought that I’d done something wrong and he’d gotten away.
~~~~~~~~~~~
Finally, Cuz asked about my pillboxes so I thought I’d elaborate.
I now have two types of pillboxes. The first I’ve had for some time; a weeks worth of compartments, Sunday through Saturday with an AM and a PM compartment for each day; for a total of 14 compartments.
The second is a simple one compartment for each day of the week type of box. However, I’ve set it up for my doses during the day. I put a label on each compartment for the hour of the dose. They are numbered, in order, 10AM, 2PM, 6PM, 10PM, 2AM, and 6AM. The seventh compartment is a blank label.
I figure that I’ll load the hourly pillbox sometime between 6AM and 10AM with my PC and the contents of the weekly pillbox. I put my PC in each compartment and my Protonix and blood pressure meds from the weekly pillbox into the 6AM and 6PM compartments of the hourly pillbox.
I did take a photo of the two boxes, the weekly
box and the daily box. As you can see from the open lids on the weekly box, both Sunday AM and PM, and the Monday AM compartments are empty. Those meds have been transferred to the daily box. Since it’s after 6PM on Sunday, I’ve taken blood pressure meds and the Protonix from the Sunday PM compartment that was transferred to the 6PM compartment in the hourly pillbox.
Since it’s not yet 10PM, the rest of the compartments are closed. Now, I don’t normally leave the compartments open after I take the pills. That was just for this photo opportunity.
Does this make my process a little clearer?
~~~~~~~~~~~~
I was 189 this AM; I’m starting to feel like a little piggie. I think that some of my weight gain is water retention; my legs feel somewhat swollen. Then again, maybe it’s that time of the month.
~~~~~~~~~~~
I mowed the lawn today. My goal is to get the lawn as short as possible before the leaves start to fall. That way, the wind will blow the leaves off my lawn and onto the neighbor’s lawn. Since the “neighbor” is the local hospital, their yard crew can mow the leaves into a mulch, for all I care. I won’t have to rake too much at all, then.
~~~~~~~~~~~~~~
We had a scare today. We couldn’t find Himmy! We searched the house high and low; no Himmy.
Since I’d been in and out throughout the day, I thought that maybe I’d let him get out somehow. I was sick!
Ben was looking all over the back yard, going along the hedgerows searching for his cat. Since I needed to pick up some Humpty Dumpty eggs which the local gas station sells, I walked over, got my eggs, and asked if they had seen a cat. They mentioned there was a black one, dead in the road, near the Men’s Mall. But Himmy isn’t black, I thought.
But, with a sinking feeling in my stomach—maybe that was there all along, now that I think about it—I walked over to check out the corpse. Thank God it wasn’t Himmy. So where was Himmy!!
Now, it’s possible that he got caught in one of the rooms upstairs. Although we searched every room, we left the doors open in case he was well hidden and locked in.
But I still felt that he was down stairs.
I was looking everywhere downstairs for the umpteenth time. I got to three empty boxes, stacked one atop the other, when I noticed something amiss with the bottom box. Now you have to understand, this box was only about six inches wider than the two boxes stacked on top of it. But, apparently, it was wide enough. Himmy was hiding (sleeping) inside the bottom box and all I caught was just a glimpse of his cheek.
What a relief to find him! I thought that I’d done something wrong and he’d gotten away.
~~~~~~~~~~~
Finally, Cuz asked about my pillboxes so I thought I’d elaborate.
I now have two types of pillboxes. The first I’ve had for some time; a weeks worth of compartments, Sunday through Saturday with an AM and a PM compartment for each day; for a total of 14 compartments.
The second is a simple one compartment for each day of the week type of box. However, I’ve set it up for my doses during the day. I put a label on each compartment for the hour of the dose. They are numbered, in order, 10AM, 2PM, 6PM, 10PM, 2AM, and 6AM. The seventh compartment is a blank label.
I figure that I’ll load the hourly pillbox sometime between 6AM and 10AM with my PC and the contents of the weekly pillbox. I put my PC in each compartment and my Protonix and blood pressure meds from the weekly pillbox into the 6AM and 6PM compartments of the hourly pillbox.
I did take a photo of the two boxes, the weekly
box and the daily box. As you can see from the open lids on the weekly box, both Sunday AM and PM, and the Monday AM compartments are empty. Those meds have been transferred to the daily box. Since it’s after 6PM on Sunday, I’ve taken blood pressure meds and the Protonix from the Sunday PM compartment that was transferred to the 6PM compartment in the hourly pillbox.Since it’s not yet 10PM, the rest of the compartments are closed. Now, I don’t normally leave the compartments open after I take the pills. That was just for this photo opportunity.
Does this make my process a little clearer?
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