Boy, does that have a bunch of meanings. I may need a disambiguation page like Wikipedia.
First, I’m back on the Ensure. It just hurts too much to eat. It even hurts to drink the Ensure—it doesn’t sit right in the stomach, and I checked the expiration date—so I started taking one teaspoon of the hydrocodone/APAP "sauce." That means 2.5mg/167mg. Not much, but I’m hoping that it helps. I don’t want to get back into that other issue! Not that I had a problem; I just don’t want one to develop.
It occurred to me today that lying in bed in a semi-reclining position—I’ve been sleeping most of the day—might not be the best thing for me. Something to do with the geometry of the digestive system, the tumor, and the introduction of food/liquids into the alimentary canal. I mean, if my cancer developed as a result of acid reflux, this is the position I developed it in. How I’m going to change that, other than sitting bolt upright, is beyond me right now. But it does give me something to think about. I don’t have the strength to sit bolt upright comfortably for any length of time. Maybe just upright in the recliner?
I’ll make the proper inquiries/notifications on Monday.
BTW, I’m back on the peppermint tea “sauce,” as well.
I’m finally getting around to getting my laundry done, too. Not that I had a lot. When you lay around all day in your pj’s you don’t need to do too much. But now that I have to go to the VLCC every weekday does mean more clothes to wash.
And some good news, my cough is changing; it’s getting more “moist.” It’s not as dry a cough as before, and it does seem to be lessening somewhat.
Kunolunkwa!
"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith
Saturday, January 19, 2008
Friday, January 18, 2008
RT, Day 2
I actually felt the beam or whatever it is hit my left side today! Weird! I could have used a pointer and matched the feel of the beam and the feel of the pointer. I bet they would have matched. It didn’t hurt; it was just sensation.
So, I really, really concentrated on the chest and right side treatments, but didn’t feel a thing. Nurse Paula said that they had delivered the exact dose they intended; they had a gauge on me.
I pay attention more than most folks, I guess. Sometimes I can “taste” the dye they use for CT scans. But then, I’m also looking for something. If I weren’t, I wouldn’t have noticed it.
~~~~~~~~
Which brings me to my final hospital bitch.
If you check Figure 4 in the photo essay of a Port Access, you will notice that Diehl Martin mentions a chemical spray they use to numb the skin prior to accessing the port. The hospital doesn’t use it!
That poor port has been accessed countless times by a needle that isn’t exactly a small gauge. It can get tender!
Now, there are stories about how my grandfather, the Norwegian, could roll up his sleeve and stick a knitting needle in his bicep deep enough that it stood straight up.
I’ve sat perfectly still while my mother slit my skin with a razor blade and probed with a needle to remove an old bullet fragment that had worked its way to the surface and was causing some discomfort. Since she doesn’t believe in alcohol except to sterilize things, I didn’t get any anesthesia prior to her surgery. 8- )
I’m no stranger to pain. I’ve been shot, stuck, cut, and sometimes I’ve done it to myself. And there were even a few times when it was on purpose.
But I don’t like to have to endure pain when I don’t have to. And if it is possible to feel a beam of radiation, imagine what a needle feels like!
There, that’s out of my system. Maybe I can let it go….
~~~~~~~~~
Dammit! Amazing Grace just came on the mp3 player. Bagpipes. Damn, damn, damn!
My best friend and hunting buddy, Rawley, died nine years ago, next month. At his request, we played that song at his funeral. That exact recording.
Today wasn’t the day to hear that! When does the pain of loss go away?
~~~~~~~~~
I don’t know if it’s the radiation or just the progression of the disease, but I have to be very careful when I eat. I do have some pain but it isn’t too bad. Yet. ;- )
The gas in my stomach backs solid (and not so solid) food up against the tumor, which then blocks the sphincter, so I can’t expel the gas. The tumor gets compressed and doesn’t like it. I’m waiting for the time when I try to regurgitate the tumor. I can’t say, “regurgitate,” can I? No, it means "to cast up again." It was never “up” in the first place. Whatever the word, I’m waiting for it to try and make an appearance.
BTW, what does fruit have? Fiber? Bulk? I’m finding out that it’s not a good idea to eat much fruit. (As I reach over and snag a grape; the alcohol comes later. Again, kidding, :- ) although I’m wondering if it wouldn’t help with the pain.) Looks like it’s back to the Ensure for a while.
~~~~~~~~~
Ben and I are planning on seeing the movie, Cloverfield, this weekend. I’m looking forward to it. Maybe I’ll pop a movie in the computer and watch one now. Take my mind off my troubles.
Later! Kunolunkwa!
"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith
So, I really, really concentrated on the chest and right side treatments, but didn’t feel a thing. Nurse Paula said that they had delivered the exact dose they intended; they had a gauge on me.
I pay attention more than most folks, I guess. Sometimes I can “taste” the dye they use for CT scans. But then, I’m also looking for something. If I weren’t, I wouldn’t have noticed it.
~~~~~~~~
Which brings me to my final hospital bitch.
If you check Figure 4 in the photo essay of a Port Access, you will notice that Diehl Martin mentions a chemical spray they use to numb the skin prior to accessing the port. The hospital doesn’t use it!
That poor port has been accessed countless times by a needle that isn’t exactly a small gauge. It can get tender!
Now, there are stories about how my grandfather, the Norwegian, could roll up his sleeve and stick a knitting needle in his bicep deep enough that it stood straight up.
I’ve sat perfectly still while my mother slit my skin with a razor blade and probed with a needle to remove an old bullet fragment that had worked its way to the surface and was causing some discomfort. Since she doesn’t believe in alcohol except to sterilize things, I didn’t get any anesthesia prior to her surgery. 8- )
I’m no stranger to pain. I’ve been shot, stuck, cut, and sometimes I’ve done it to myself. And there were even a few times when it was on purpose.
But I don’t like to have to endure pain when I don’t have to. And if it is possible to feel a beam of radiation, imagine what a needle feels like!
There, that’s out of my system. Maybe I can let it go….
~~~~~~~~~
Dammit! Amazing Grace just came on the mp3 player. Bagpipes. Damn, damn, damn!
My best friend and hunting buddy, Rawley, died nine years ago, next month. At his request, we played that song at his funeral. That exact recording.
Today wasn’t the day to hear that! When does the pain of loss go away?
~~~~~~~~~
I don’t know if it’s the radiation or just the progression of the disease, but I have to be very careful when I eat. I do have some pain but it isn’t too bad. Yet. ;- )
The gas in my stomach backs solid (and not so solid) food up against the tumor, which then blocks the sphincter, so I can’t expel the gas. The tumor gets compressed and doesn’t like it. I’m waiting for the time when I try to regurgitate the tumor. I can’t say, “regurgitate,” can I? No, it means "to cast up again." It was never “up” in the first place. Whatever the word, I’m waiting for it to try and make an appearance.
BTW, what does fruit have? Fiber? Bulk? I’m finding out that it’s not a good idea to eat much fruit. (As I reach over and snag a grape; the alcohol comes later. Again, kidding, :- ) although I’m wondering if it wouldn’t help with the pain.) Looks like it’s back to the Ensure for a while.
~~~~~~~~~
Ben and I are planning on seeing the movie, Cloverfield, this weekend. I’m looking forward to it. Maybe I’ll pop a movie in the computer and watch one now. Take my mind off my troubles.
Later! Kunolunkwa!
"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith
Thursday, January 17, 2008
Radiation Therapy, Day 1
From the title you should gather that today was my first day of radiation therapy, and you’d be right! I’m sure that y’all have had X-rays done. That’s pretty much the procedure. Except in this case, the “head” of the machine does move around me to several different positions to “zap” me.
I got a chance to talk to the nutritionist, Nutritionist Lisa, who is taking the place of Nutritionist Amy who is moving on to greater challenges in the hospital. Looks nothing like N. Amy. I don’t know if I mentioned it, but I ran into another Nutritionist Amy on the hospital-side of things when I was stuck over there for several days last week. You remember. Well, the hospital N. Amy looked a lot like the VLCC N. Amy only with shorter blonde hair.
Now I have chemobrain. My memory can play tricks on me. So, I was confused for a few minutes when the hospital version walked into the room. When I explained my confusion, she said another patient had just told her the same thing!!
Anyway, N. Lisa and I had a great talk about my nutrition. Even though I’m not eating the way that they would like, I’m not losing any weight so whatever I’m doing must be working.
I learned a few things from her and she learned a bunch from me! :-) She didn’t even know about the “polymeal.” What kind of nutritionist doesn’t know about the polymeal? Actually, I’m surprised that Wikipedia even has an article on it.
As an aside, please note that the polymeal article mentions that alcohol reduces clotting! Since that seems to be an issue with me right now, I’m gonna hafta start drinking, again!!!! Since I’m allergic to the red wine mentioned, here come the grapes and Southern Comfort, or the Jose Cuervo, or if I can get a supply of it, the Cubano Anejo!
(It was a joke! Or at least, I think it was a joke. I could be wrong. I have been wrong before, you know!)
BUT, while we were talking nutrition after my radiation treatment, I started to get my “hiccups.” I always thought that they were a SFX (side effect) of one of my chemo drugs. So, since I hadn’t just had chemo, I wondered out loud what could be the problem and answered my own question. I realized very quickly that the “hiccup” was my tumor responding to getting kinda sick today with all the radiation passing through it. Just like it gets sick after all those chemo drugs start to make it sick. Pretty quick, huh? I still got it!
Maybe shortly my tumor won’t be giving me any problems about sharing my stomach with food!! :-D
~~~~~~~~~
I finally, finally, finally got some of my imaging today that I asked for how many months ago and that Dr. P said that he would get for me, when one of my kids was with me as a witness in the office. The files say they were written on 12/14/2007. I got it slightly more than one month later. It took over a month to get to me. You can tell how high I rate, as a customer, on their priority list.
I’m going to have to learn a new software program to do anything with the images, but, Good Gorram, was the initial tumor HUGE!
The other part of my learning curve will be to remember my anatomy! Some of the things I’m seeing aren’t the tumor, but actually things like the heart and the bladder. Yes, I do know which is which. But it’s just strange poring over images of my own insides!
So, Ben and I will work on that over the next couple of days.
~~~~~~~~~
Just to correct my daughter, the anthropologist, but since AmerIndians are more of my specialty than hers, I’d just like to set the record straight.
She mentioned that the T-shirt that she and Ben had gotten for me had four Indian tribes named on it. They weren’t tribes; they were actual Indian names. Geronimo, who was often considered a chief, was in actuality a shaman and medicine man. He was also, probably, the fiercest warrior the Apache has ever produced. His last wish was to return to his homeland, but he died a prisoner of war in Oklahoma, February 17, 1909.
Chappo was also named on the t-shirt. Chappo was a son to Geronimo, while Perico (Spanish for parrot) was brother to Geronimo. Chihuahua, also named, was also a member of their merry band that fought off over 5,000 American troops for over 2 years.
Now you know why those four were mentioned with regard to Homeland Security, and why I like the shirt so very, very much. It even has my blood on it now from that Lovenox needle with the bent tip. Which reminds me, I gotta do some wash!
And, yes, I had to look up the names. My memory isn’t as good as it once was, but I’m just happy to remember that two of the names were associated with Geronimo.
BTW, Geronimo’s youngest son was named Naiche. That name is very close to the Cheyenne word for “thank you” –nia’ish, that plays a part in the movie The Last of the Dog Men. I had briefly considered the Apache spelling as a name for another dog, if I ever got another. My first was a black lab that I named Otsitsi (sounds like the French name, Gigi, O’gigi). I miss her!
Hmmm? Oh, it’s the first Oneida word I ever learned-BEER!
~~~~~~~~~
Before I got home today and found Amy’s post on the blog, I was thinking about something that she had said in a comment a while back.
I have mentioned before that I have noticed a personality change in myself over the course of my disease. Normally, I try to minimize the “visible” changes as much as possible. But today, since I was out for the first time in a while and that’s usually when I notice the difference, I started to wonder if the change is getting noticeable to the folks who know me best, my kids.
So, Ben and Amy, are you starting to notice the change? Any specifics or just a gut feeling? Anybody?
~~~~~~~~~
I did do some shoveling today. More snow blowing than shoveling, but it quickly tuckered me out and started a coughing fit. I feel like I should be doing more, physically, but at the same time, I realize the need to husband my strength. It can create an internal dilemma. Maybe this should have gone in the section above.
I just heard a loud noise, the wind and snow are blowing and my hearing is getting poor, so I got up to investigate. Si, con mi pistola en mi mano! It wasn't time for Ben to be home so I had to check.
But now I’m back at the computer and coughing up a storm. Move, get tired, and cough a lot, or sit around and do nothing but play on the computer?
I have been drinking more fruit juice lately, usually V-8, and tonight when I couldn’t even eat the soup and rice I had for lunch, I ate some melon, pineapple, and grape chunks that I picked up at the store today. It hurt for a while, but did taste pretty good. And the melon pieces they put in those trays don’t usually have much in the way of flavor.
Amy, I also picked up the bruchetta “sauce” that I had seen at Woodman’s when you were here. It must be kinda like a “pico de gallo.” If I can figure out how to eat the bruchetta, maybe the pico de gallo will be next! Italian to Mexican! :-)
I can’t think of anything else right now. There’s still something else to bitch about from my hospital stay, but I can’t think of it right now. Maybe later.
Kunolunkwa!
"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith
I got a chance to talk to the nutritionist, Nutritionist Lisa, who is taking the place of Nutritionist Amy who is moving on to greater challenges in the hospital. Looks nothing like N. Amy. I don’t know if I mentioned it, but I ran into another Nutritionist Amy on the hospital-side of things when I was stuck over there for several days last week. You remember. Well, the hospital N. Amy looked a lot like the VLCC N. Amy only with shorter blonde hair.
Now I have chemobrain. My memory can play tricks on me. So, I was confused for a few minutes when the hospital version walked into the room. When I explained my confusion, she said another patient had just told her the same thing!!
Anyway, N. Lisa and I had a great talk about my nutrition. Even though I’m not eating the way that they would like, I’m not losing any weight so whatever I’m doing must be working.
I learned a few things from her and she learned a bunch from me! :-) She didn’t even know about the “polymeal.” What kind of nutritionist doesn’t know about the polymeal? Actually, I’m surprised that Wikipedia even has an article on it.
As an aside, please note that the polymeal article mentions that alcohol reduces clotting! Since that seems to be an issue with me right now, I’m gonna hafta start drinking, again!!!! Since I’m allergic to the red wine mentioned, here come the grapes and Southern Comfort, or the Jose Cuervo, or if I can get a supply of it, the Cubano Anejo!
(It was a joke! Or at least, I think it was a joke. I could be wrong. I have been wrong before, you know!)
BUT, while we were talking nutrition after my radiation treatment, I started to get my “hiccups.” I always thought that they were a SFX (side effect) of one of my chemo drugs. So, since I hadn’t just had chemo, I wondered out loud what could be the problem and answered my own question. I realized very quickly that the “hiccup” was my tumor responding to getting kinda sick today with all the radiation passing through it. Just like it gets sick after all those chemo drugs start to make it sick. Pretty quick, huh? I still got it!
Maybe shortly my tumor won’t be giving me any problems about sharing my stomach with food!! :-D
~~~~~~~~~
I finally, finally, finally got some of my imaging today that I asked for how many months ago and that Dr. P said that he would get for me, when one of my kids was with me as a witness in the office. The files say they were written on 12/14/2007. I got it slightly more than one month later. It took over a month to get to me. You can tell how high I rate, as a customer, on their priority list.
I’m going to have to learn a new software program to do anything with the images, but, Good Gorram, was the initial tumor HUGE!
The other part of my learning curve will be to remember my anatomy! Some of the things I’m seeing aren’t the tumor, but actually things like the heart and the bladder. Yes, I do know which is which. But it’s just strange poring over images of my own insides!
So, Ben and I will work on that over the next couple of days.
~~~~~~~~~
Just to correct my daughter, the anthropologist, but since AmerIndians are more of my specialty than hers, I’d just like to set the record straight.
She mentioned that the T-shirt that she and Ben had gotten for me had four Indian tribes named on it. They weren’t tribes; they were actual Indian names. Geronimo, who was often considered a chief, was in actuality a shaman and medicine man. He was also, probably, the fiercest warrior the Apache has ever produced. His last wish was to return to his homeland, but he died a prisoner of war in Oklahoma, February 17, 1909.
Chappo was also named on the t-shirt. Chappo was a son to Geronimo, while Perico (Spanish for parrot) was brother to Geronimo. Chihuahua, also named, was also a member of their merry band that fought off over 5,000 American troops for over 2 years.
Now you know why those four were mentioned with regard to Homeland Security, and why I like the shirt so very, very much. It even has my blood on it now from that Lovenox needle with the bent tip. Which reminds me, I gotta do some wash!
And, yes, I had to look up the names. My memory isn’t as good as it once was, but I’m just happy to remember that two of the names were associated with Geronimo.
BTW, Geronimo’s youngest son was named Naiche. That name is very close to the Cheyenne word for “thank you” –nia’ish, that plays a part in the movie The Last of the Dog Men. I had briefly considered the Apache spelling as a name for another dog, if I ever got another. My first was a black lab that I named Otsitsi (sounds like the French name, Gigi, O’gigi). I miss her!
Hmmm? Oh, it’s the first Oneida word I ever learned-BEER!
~~~~~~~~~
Before I got home today and found Amy’s post on the blog, I was thinking about something that she had said in a comment a while back.
I have mentioned before that I have noticed a personality change in myself over the course of my disease. Normally, I try to minimize the “visible” changes as much as possible. But today, since I was out for the first time in a while and that’s usually when I notice the difference, I started to wonder if the change is getting noticeable to the folks who know me best, my kids.
So, Ben and Amy, are you starting to notice the change? Any specifics or just a gut feeling? Anybody?
~~~~~~~~~
I did do some shoveling today. More snow blowing than shoveling, but it quickly tuckered me out and started a coughing fit. I feel like I should be doing more, physically, but at the same time, I realize the need to husband my strength. It can create an internal dilemma. Maybe this should have gone in the section above.
I just heard a loud noise, the wind and snow are blowing and my hearing is getting poor, so I got up to investigate. Si, con mi pistola en mi mano! It wasn't time for Ben to be home so I had to check.
But now I’m back at the computer and coughing up a storm. Move, get tired, and cough a lot, or sit around and do nothing but play on the computer?
I have been drinking more fruit juice lately, usually V-8, and tonight when I couldn’t even eat the soup and rice I had for lunch, I ate some melon, pineapple, and grape chunks that I picked up at the store today. It hurt for a while, but did taste pretty good. And the melon pieces they put in those trays don’t usually have much in the way of flavor.
Amy, I also picked up the bruchetta “sauce” that I had seen at Woodman’s when you were here. It must be kinda like a “pico de gallo.” If I can figure out how to eat the bruchetta, maybe the pico de gallo will be next! Italian to Mexican! :-)
I can’t think of anything else right now. There’s still something else to bitch about from my hospital stay, but I can’t think of it right now. Maybe later.
Kunolunkwa!
"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith
Some thoughts to share....
Thanks Dad and Nettie for the feedback on my question. While I wasn't just talking about your venting on the blog, Dad, I understand that venting in real life serves the same purpose ;-). I know how stubborn you are, and I just don't want you to hesitate to ask for help or express your needs if/when you feel them.
If your insurance will pay for housing if you go to H. Lee Moffitt in Tampa, can I bill your insurance if you stay with ME ;-)!?!? Just think about it, we may be able to get you some income out of this deal, yet ;-).
Ronnie and Cuz (in the pic above with Dad) gave us each a Danish Christmas beer when they were visiting GB. They wanted feedback once we tasted them. Well, Mike and I shared that beer awhile ago, and I've been forgetting to share my thoughts. Now, mind you, I've never been a beer drinker, so my opinion isn't very experienced. I thought it was good, but a bit strong. The aftertaste reminded me a bit of soy sauce ;-). Mike said it was similar to some of the dark ales he's tasted before. It was very interesting, but not being a beer drinker, I wouldn't be chugging them anytime soon ;-).
On that note, I wanted to share a few pics from my trip home. Also, Dad, Cuz and Ronnie - please email me any pics you took while we were all up there. The first pic above is Dad in his winter PJ's, on the phone, with his stocking cap on. I just like the pic, so thought I'd share ;-).
Dad really enjoyed a T-Shirt Ben and I got him, and said he wanted a pic of it on his blog, so I'm FINALLY posting one. Here it is, Dad, enjoy ;-). It says, "HOMELAND SECURITY: [names of four indian tribes]: FREEDOM IS NOT FREE: FIGHTING TERRORISM." You can see the image for yourself. I'm glad you liked it, Dad ;-).
xoxoxo,
Amy
P.S. How did 1st day of radiation go?
Wednesday, January 16, 2008
"Thinking of You"
I got a card from the hospital today, wishing me comfort, peace, and hope. There were five signatures, three of which were HUCs. I had to look that up ‘cause I didn’t know what a health unit coordinator was. As it was, I didn’t recognize any of the names. It was a nice gesture, but it would have helped had I had contact with the people who signed the card. *sigh*
I was also hoping to learn the name of that nurse on nights! :-)
I started to make good on a promise elsewhere. I started to reread Glory Road by Robert Heinlein. I’m just about halfway through. I’m surprised by how much I’d forgotten although I’m remembering quite a bit. It’s funny what you mind forgets. Now, it’s been decades since I read this, but I can’t see how I ever thought that this book was a “juvenile!”
I had Ben mail some bills for me today. I did get up later and walk across the street so I guess I could have mailed them myself. I’m still moving slow with some pain in the right leg. Maybe another clot?
I still have the cough so it should be interesting tomorrow during radiation. And did I mention that I’m back on soft food? I guess that stomach tumor just doesn’t like to share its living quarters with solid food. So, back to warm soups.
Got an email from my HR person today. She finally took my advice about curamin and she says that it is helping some. I told her that she has to build up a level in her blood before it really becomes effective. I also told her to make sure she’s getting enough magnesium. That’s one “take-away” I’m glad I got from all this clinic stuff.
She also mentioned that her mother-in-law passed away on the ninth. They had told her that she had 4-6 months on the third of this month. At 78, I believe, it looks like she didn’t want to stick around for the fight. I do know the feeling after having been so sick for so long. Pero, yo soy testarudo!! I’m stubborn!! So I have that working for me.
Gonna stop now and try to get more reading in before Ben comes home.
"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith
I was also hoping to learn the name of that nurse on nights! :-)
I started to make good on a promise elsewhere. I started to reread Glory Road by Robert Heinlein. I’m just about halfway through. I’m surprised by how much I’d forgotten although I’m remembering quite a bit. It’s funny what you mind forgets. Now, it’s been decades since I read this, but I can’t see how I ever thought that this book was a “juvenile!”
I had Ben mail some bills for me today. I did get up later and walk across the street so I guess I could have mailed them myself. I’m still moving slow with some pain in the right leg. Maybe another clot?
I still have the cough so it should be interesting tomorrow during radiation. And did I mention that I’m back on soft food? I guess that stomach tumor just doesn’t like to share its living quarters with solid food. So, back to warm soups.
Got an email from my HR person today. She finally took my advice about curamin and she says that it is helping some. I told her that she has to build up a level in her blood before it really becomes effective. I also told her to make sure she’s getting enough magnesium. That’s one “take-away” I’m glad I got from all this clinic stuff.
She also mentioned that her mother-in-law passed away on the ninth. They had told her that she had 4-6 months on the third of this month. At 78, I believe, it looks like she didn’t want to stick around for the fight. I do know the feeling after having been so sick for so long. Pero, yo soy testarudo!! I’m stubborn!! So I have that working for me.
Gonna stop now and try to get more reading in before Ben comes home.
"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith
Monday, January 14, 2008
MHE 2
When we last left our hero it was going on the night of his first day in the hospital, he was tired having been up since 6:30AM to get to his appointment at VLCC early, so he could get to his PCP’s office at 8:30AM. And we know how that worked out, don’t we?
By this time I had hooked up the computer and was on line via an unsecured WiFi link. Because it was unsecured and the hospital could read everything I wrote, I didn’t visit my blog but contented to play at some other sites. In retrospect, I could have logged my impressions to a Word document for later posting, but that would have required thinking.
It took me so long to get online because the only outlets available were on the bed, and Nurse A. didn’t know if they could be used. She put in a call to the computer area, but they never got back to the customer, I mean the patient, with an answer. The nurse on nights had no issues with using the bed outlets and plugged me right in!
So there I was, trying to sleep and couldn’t! Nothing I tried would let me sleep without chemical intervention. And no chemicals were forthcoming.
Morning came and I was still trying to get some sleep. Nurse Lisa came in to get some blood and needed another nurse to have my port accessed. I told her that I’d been up all night. The night nurse—I wish I could remember her name, she was a cutie—confirmed my story. She told Nurse Lisa that every time she came in to check on me my eyes were open!
Dr. M—the new pulmonary guy, it was his third day there—came in later, talked with me, and said he’d order some Ambien for me for later in the morning. It never came!
So Day 2, Thursday, consisted of getting a chest X-ray looking for the source of my cough.
It was fun talking to the volunteers taking me to the X-ray department. I told them that I was the only member of the world’s smallest minority. That got them interested! So I explained that, as an individual I was the only one exactly like me. Then they laughed when I explained that they too were the only members of the world’s smallest minority of people exactly like them. I had them laughing, nodding, and agreeing with me in short order. It was fun! Made my sleepless day go easier.
Not much else happened that day that I remember. I kept the lights low and tried to sleep, but sleep never came. It was only when I was playing my music down low and attempting to sleep that I noticed that I might, just might, have dozed for a minute or two. Never for very long, I just missed hearing the entire song a couple of times.
Night came and I got my sleeping pill. Blissful sleep! I had them close the door so the hall noise wouldn’t disturb me, but it wasn’t necessary. I slept until they awakened me to do vitals and I went right back to sleep.
I had been awake, or almost so, for 39 hours!!!!!! The nurses were amazed that I was still functioning, and functioning as well as I was! 39 freakin’ hours because they didn’t pay attention to my personal meds.
Did I mention that I didn’t get all of my blood pressure meds? They were driving me nuts, not giving my meds on time, not giving me the meds I would have been taking at home—they gave me Prilosec instead of Protonix, so why do I need the more expensive med at home?—and not giving me my supplements, obviously!
Let me take a moment to describe how they had me trussed up. I had had my port accessed and fluids going in there. I had a large bore IV stuck in my left ante-cubital vein at the elbow joint. They had used it for the CTPA and had just left it there. I had monitoring telemetry leads stuck all over my chest. AND, I had a nasal canula piping oxygen into my nostrils going at two liters a minute! I was all set.
Considering I had heard a Code Blue on third floor ICU and an “intervention” in the room next to me, I was glad they were so worried about me!
Day 3, Friday--I slept in until they came in to take my vitals. Now, I don’t remember if it was this particular AM, but one of the night nurses did my lung sounds. She had me sit up and put the stethoscope to my back. But the first thing I noticed was that she wasn’t listening in the normal areas; she was way outside those. She didn’t have me take any deep breaths. I just sat there waiting for the command to “Take a deep breath” and it never came. She then proceeded to listen to my heart sounds. At least she got those right!
They came in early Friday to do an echocardiogram. I later found out that my heart is in good shape although I do have some very slight leakage from one of the valves. Considering I had at least one blood clot go through my heart, it could be just a chunk that got hung up and will eventually go way. Time will tell.
I had Respiratory Therapy (RT) come in and do a treatment where I breathe a mist deep into my lungs. It’s supposed to open up the passageways, or something. The only thing it did was make me lose control of my fine muscle motor skills. I tried typing into my HP iPAQ and couldn’t even hit the letters. It did make me cough more, as well!
Later Dr M. told me that a cough was a symptom of a PE. So why were they doing RT? Especially since later the RT folks came back with an Advair inhaler and got me started on that. I think that they were trying to sell me everything they could since I was there!
I had asked Ben to bring in a telephone cable since there was a data port on the side of the phone. I could use a dial-up connection to my ISP and be able to access my accounts with considerably more confidence than by using their WiFi setup. Unfortunately, I didn’t have my account info with me so that didn’t happen. Sorry!
Day 4 was Saturday. I slept well again last night with the sleeping meds. They got me ready to go home but forgot to send my Advair inhaler with me. Checking later, it’s not even listed on the list of meds that they had for me at the hospital. They had a new med listed, the cough med that they had me on, but they never put it on the list of Discharge Prescriptions. But I wasn’t feeling well; I had had a “stomach issue” over breakfast similar to my March 16 trip to the ER and it affected my whole day apparently. I had been eating just fine until then. I was even complaining about th elack of taste! But my lack of IP-6 due to being in the hospital might have had something to do with it. Don’t know.
Anyway, I wasn’t mentally up to the challenge of keeping the doctors and nurses in line.
Ben and I stopped on the way home to pick up the one tablet of antibiotic that I needed for the next day, and the sleeping pills that they had me on. I didn’t notice at that time that the cough med wasn’t on the list.
We got home and I laid down for a nap, which I hardly ever do, and surprise, surprise, I slept until 5:00PM
I called back Saturday afternoon to find out about the cough med and was rewarded by a return call from a rather snippy Dr. M. He said that he would send the prescriptions to the pharmacy. Since I needed to update my blood pressure meds, I waited for a while and then went on line to let the pharmacy know about my needed refills. A refill for the Adair was there, but the cough med wasn’t. I waited until Monday and called my PCP.
When I went I today to pick up my meds, I refused the Advair prescription. I also found out that the cough med wasn’t a prescription med. Was that why it wasn’t on the list of Discharge Prescriptions? I have had OTC meds put on a script before. Why was this different? Or was it just one of those things a patient with chemobrain was supposed to know?
I had tried calling my son using the hospital room phone because cell phones don’t work very well in that building. I could never get him or his machine; the phone would just continue to ring. I had tried dialing just one number and listening for a recorded message; nothing. On my last day there, I found out that I had to dial for an outside line to call my son. There had been no instructions when I got there; there was no indication on the phone at all. How the heck was I supposed to know I needed an outside access number to call out?
That’s enough bitching.
Basically, I had three issues. I was anemic. I expected that, that’s what the IP-6 does to deny the cancer cells the necessary iron to live.
I had at least one blood clot that the VLCC hadn’t looked for or caught that needed to be addressed.
And I had a cough, that can be a symptom of the PE or it cold be the result of an infection. Currently it looks like it’s not an infection, letting Mike and Amy off the hook! :-D
Now, I’m just trying to catch up with the rest of my life while sleeping in due to the meds. I have Radiation Therapy backed off until Thursday and I don’t know when my next chemo will start. BTW, I saw ANOTHER oncologist; Dr. P. is on vacation. I did ask him about the Maruyama vaccine. He said that he hadn’t heard about it but that he’d look it up!
Let me know if I missed anything that you wanted to know. And if someone can get me the name of that nurse….
By this time I had hooked up the computer and was on line via an unsecured WiFi link. Because it was unsecured and the hospital could read everything I wrote, I didn’t visit my blog but contented to play at some other sites. In retrospect, I could have logged my impressions to a Word document for later posting, but that would have required thinking.
It took me so long to get online because the only outlets available were on the bed, and Nurse A. didn’t know if they could be used. She put in a call to the computer area, but they never got back to the customer, I mean the patient, with an answer. The nurse on nights had no issues with using the bed outlets and plugged me right in!
So there I was, trying to sleep and couldn’t! Nothing I tried would let me sleep without chemical intervention. And no chemicals were forthcoming.
Morning came and I was still trying to get some sleep. Nurse Lisa came in to get some blood and needed another nurse to have my port accessed. I told her that I’d been up all night. The night nurse—I wish I could remember her name, she was a cutie—confirmed my story. She told Nurse Lisa that every time she came in to check on me my eyes were open!
Dr. M—the new pulmonary guy, it was his third day there—came in later, talked with me, and said he’d order some Ambien for me for later in the morning. It never came!
So Day 2, Thursday, consisted of getting a chest X-ray looking for the source of my cough.
It was fun talking to the volunteers taking me to the X-ray department. I told them that I was the only member of the world’s smallest minority. That got them interested! So I explained that, as an individual I was the only one exactly like me. Then they laughed when I explained that they too were the only members of the world’s smallest minority of people exactly like them. I had them laughing, nodding, and agreeing with me in short order. It was fun! Made my sleepless day go easier.
Not much else happened that day that I remember. I kept the lights low and tried to sleep, but sleep never came. It was only when I was playing my music down low and attempting to sleep that I noticed that I might, just might, have dozed for a minute or two. Never for very long, I just missed hearing the entire song a couple of times.
Night came and I got my sleeping pill. Blissful sleep! I had them close the door so the hall noise wouldn’t disturb me, but it wasn’t necessary. I slept until they awakened me to do vitals and I went right back to sleep.
I had been awake, or almost so, for 39 hours!!!!!! The nurses were amazed that I was still functioning, and functioning as well as I was! 39 freakin’ hours because they didn’t pay attention to my personal meds.
Did I mention that I didn’t get all of my blood pressure meds? They were driving me nuts, not giving my meds on time, not giving me the meds I would have been taking at home—they gave me Prilosec instead of Protonix, so why do I need the more expensive med at home?—and not giving me my supplements, obviously!
Let me take a moment to describe how they had me trussed up. I had had my port accessed and fluids going in there. I had a large bore IV stuck in my left ante-cubital vein at the elbow joint. They had used it for the CTPA and had just left it there. I had monitoring telemetry leads stuck all over my chest. AND, I had a nasal canula piping oxygen into my nostrils going at two liters a minute! I was all set.
Considering I had heard a Code Blue on third floor ICU and an “intervention” in the room next to me, I was glad they were so worried about me!
Day 3, Friday--I slept in until they came in to take my vitals. Now, I don’t remember if it was this particular AM, but one of the night nurses did my lung sounds. She had me sit up and put the stethoscope to my back. But the first thing I noticed was that she wasn’t listening in the normal areas; she was way outside those. She didn’t have me take any deep breaths. I just sat there waiting for the command to “Take a deep breath” and it never came. She then proceeded to listen to my heart sounds. At least she got those right!
They came in early Friday to do an echocardiogram. I later found out that my heart is in good shape although I do have some very slight leakage from one of the valves. Considering I had at least one blood clot go through my heart, it could be just a chunk that got hung up and will eventually go way. Time will tell.
I had Respiratory Therapy (RT) come in and do a treatment where I breathe a mist deep into my lungs. It’s supposed to open up the passageways, or something. The only thing it did was make me lose control of my fine muscle motor skills. I tried typing into my HP iPAQ and couldn’t even hit the letters. It did make me cough more, as well!
Later Dr M. told me that a cough was a symptom of a PE. So why were they doing RT? Especially since later the RT folks came back with an Advair inhaler and got me started on that. I think that they were trying to sell me everything they could since I was there!
I had asked Ben to bring in a telephone cable since there was a data port on the side of the phone. I could use a dial-up connection to my ISP and be able to access my accounts with considerably more confidence than by using their WiFi setup. Unfortunately, I didn’t have my account info with me so that didn’t happen. Sorry!
Day 4 was Saturday. I slept well again last night with the sleeping meds. They got me ready to go home but forgot to send my Advair inhaler with me. Checking later, it’s not even listed on the list of meds that they had for me at the hospital. They had a new med listed, the cough med that they had me on, but they never put it on the list of Discharge Prescriptions. But I wasn’t feeling well; I had had a “stomach issue” over breakfast similar to my March 16 trip to the ER and it affected my whole day apparently. I had been eating just fine until then. I was even complaining about th elack of taste! But my lack of IP-6 due to being in the hospital might have had something to do with it. Don’t know.
Anyway, I wasn’t mentally up to the challenge of keeping the doctors and nurses in line.
Ben and I stopped on the way home to pick up the one tablet of antibiotic that I needed for the next day, and the sleeping pills that they had me on. I didn’t notice at that time that the cough med wasn’t on the list.
We got home and I laid down for a nap, which I hardly ever do, and surprise, surprise, I slept until 5:00PM
I called back Saturday afternoon to find out about the cough med and was rewarded by a return call from a rather snippy Dr. M. He said that he would send the prescriptions to the pharmacy. Since I needed to update my blood pressure meds, I waited for a while and then went on line to let the pharmacy know about my needed refills. A refill for the Adair was there, but the cough med wasn’t. I waited until Monday and called my PCP.
When I went I today to pick up my meds, I refused the Advair prescription. I also found out that the cough med wasn’t a prescription med. Was that why it wasn’t on the list of Discharge Prescriptions? I have had OTC meds put on a script before. Why was this different? Or was it just one of those things a patient with chemobrain was supposed to know?
I had tried calling my son using the hospital room phone because cell phones don’t work very well in that building. I could never get him or his machine; the phone would just continue to ring. I had tried dialing just one number and listening for a recorded message; nothing. On my last day there, I found out that I had to dial for an outside line to call my son. There had been no instructions when I got there; there was no indication on the phone at all. How the heck was I supposed to know I needed an outside access number to call out?
That’s enough bitching.
Basically, I had three issues. I was anemic. I expected that, that’s what the IP-6 does to deny the cancer cells the necessary iron to live.
I had at least one blood clot that the VLCC hadn’t looked for or caught that needed to be addressed.
And I had a cough, that can be a symptom of the PE or it cold be the result of an infection. Currently it looks like it’s not an infection, letting Mike and Amy off the hook! :-D
Now, I’m just trying to catch up with the rest of my life while sleeping in due to the meds. I have Radiation Therapy backed off until Thursday and I don’t know when my next chemo will start. BTW, I saw ANOTHER oncologist; Dr. P. is on vacation. I did ask him about the Maruyama vaccine. He said that he hadn’t heard about it but that he’d look it up!
Let me know if I missed anything that you wanted to know. And if someone can get me the name of that nurse….
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