Wednesday, February 07, 2007
Anniversary!
For a while I've been marking cancerversaries. November 5: my surgery date. November 3: second bone scan and confirmation of metastatic disease. December: hospital stay. I don't think I will be able to forget and keep from feeling unease when late fall rolls around again, but a new marker of passing time is coming up.
February 25 will be Brian and my first wedding anniversary. I confess that when we got married, I was not entirely convinced that I would be seeing an anniversary, but I am thrilled and relieved to comment that my notion of impending doom was silly and that we will be seeing many more anniversaries.
February 14 will be my first Valentine's Day as a married person. April 13 is the anniversary of our first date (at La Shish...Brian rode his Harley for optimum impact). Spring is considered to be a time of renewal and rebirth. Usually this is represented by bunnies, tulips, and Cadbury eggs. I represent it by throwing off the shackles of my wheelchair, walker, and Fentanyl patches, and by celebrating what is good instead of being mired in what's miserable.
February 25 will be Brian and my first wedding anniversary. I confess that when we got married, I was not entirely convinced that I would be seeing an anniversary, but I am thrilled and relieved to comment that my notion of impending doom was silly and that we will be seeing many more anniversaries.
February 14 will be my first Valentine's Day as a married person. April 13 is the anniversary of our first date (at La Shish...Brian rode his Harley for optimum impact). Spring is considered to be a time of renewal and rebirth. Usually this is represented by bunnies, tulips, and Cadbury eggs. I represent it by throwing off the shackles of my wheelchair, walker, and Fentanyl patches, and by celebrating what is good instead of being mired in what's miserable.
Labels: anniversary, bone scan, Brian, cancerversary, fentanyl, hospital, metastasis, motorcycle, surgery, walker, wedding, wheelchair
Saturday, November 11, 2006
Mostly Better
I should probably state that the bus ride is over. I'm feeling mostly better.
I still have lots of congestion and am on some antibiotics and have also been extremely tired. I don't think the antibiotics I pleaded for last Tuesday are working well (let's just say that today I asked Brian to buy some cranberry juice in my desperation) and will try to call tomorrow.
My left eye itches and I feel a little achey. The apartment is too cold. My right hand is a little bit chafed and my left thumb is somewhat crushed from trying to knit with squeaky chenille.
My hair is stupid and I have acne. My right hip is giving me some twinges and I can't remember when I last changed the fentanyl patch.
My lower back is sore. I've been feeling some tightness under my left breast and naturally worry about it. I keep having to sneeze and the wires in my braces are getting too long and poke into the sides of my cheeks.
But I can't complain.
I still have lots of congestion and am on some antibiotics and have also been extremely tired. I don't think the antibiotics I pleaded for last Tuesday are working well (let's just say that today I asked Brian to buy some cranberry juice in my desperation) and will try to call tomorrow.
My left eye itches and I feel a little achey. The apartment is too cold. My right hand is a little bit chafed and my left thumb is somewhat crushed from trying to knit with squeaky chenille.
My hair is stupid and I have acne. My right hip is giving me some twinges and I can't remember when I last changed the fentanyl patch.
My lower back is sore. I've been feeling some tightness under my left breast and naturally worry about it. I keep having to sneeze and the wires in my braces are getting too long and poke into the sides of my cheeks.
But I can't complain.
Labels: antibiotics, braces, Brian, fentanyl, hair, hip, infection, nausea, tired
Sunday, May 21, 2006
An Official Junkie
After talking with Lita this past Friday, I feel slightly more at ease. Brian called her out of concern, and she gave me a call to find out how I was doing. Don't get me wrong--I'm still unhappy with having to be on chemotherapy again when I had hoped an alternative might work, and I have been rather weepy about my situation in general, but at least I'm no longer climbing the walls and have been able to sleep.
She reminded me that the chemo was something they had actually wanted to start with, but I was so sick in November when I first came to see Dr. Hayes that I wouldn't have been able to tolerate it. So they started hormone therapy to buy some time and did the radiation. Now that I'm stronger and feeling well, the time is good. The hope is to beat back the tumors and the chemo (combined with another drug that inhibits the growth of new blood vessels, which tumors tend to create to feed themselves) has the potential to shrink things so that they are undetectable. Of course there's no way to know if this will happen--it might not, in which case they'll try something else--but at least there's a chance. She doesn't expect my immune system to be compromised, and so far I haven't felt any nausea or other symptoms aside from some sinus pain and general digestive unrest.
It also occurred to me that I hadn't changed my fentanyl patch in something like four or five days. Lita made me promise to change it immediately--I was probably undergoing withdrawal, which can make people extremely agitated and restless. So I did, and sure enough, I feel more calm and have been able to rest. It's official: I'm hooked on little narcotic patches. I remember trying to give up caffeine one year for lent. I had terrible withdrawal headaches, but this feeling was so much worse.
She reminded me that the chemo was something they had actually wanted to start with, but I was so sick in November when I first came to see Dr. Hayes that I wouldn't have been able to tolerate it. So they started hormone therapy to buy some time and did the radiation. Now that I'm stronger and feeling well, the time is good. The hope is to beat back the tumors and the chemo (combined with another drug that inhibits the growth of new blood vessels, which tumors tend to create to feed themselves) has the potential to shrink things so that they are undetectable. Of course there's no way to know if this will happen--it might not, in which case they'll try something else--but at least there's a chance. She doesn't expect my immune system to be compromised, and so far I haven't felt any nausea or other symptoms aside from some sinus pain and general digestive unrest.
It also occurred to me that I hadn't changed my fentanyl patch in something like four or five days. Lita made me promise to change it immediately--I was probably undergoing withdrawal, which can make people extremely agitated and restless. So I did, and sure enough, I feel more calm and have been able to rest. It's official: I'm hooked on little narcotic patches. I remember trying to give up caffeine one year for lent. I had terrible withdrawal headaches, but this feeling was so much worse.
Labels: Brian, chemo, Dr. Hayes, fentanyl, Lita
Friday, May 19, 2006
Unsettled
...Is the understatement. Right now I am in a state of full-on panic and I don't know what to do about it. I spent most of the night in a state of agitation, flopping this way and that, and waking up provides no relief. I have nervous energy I can't get rid of and don't know what to do; my hands can hardly keep from shaking enough to type legibly.
I hope this feeling passes and that I can get back to being myself. I don't like this crawling under my skin and the feeling that I might explode in all directions at once.
I hope this feeling passes and that I can get back to being myself. I don't like this crawling under my skin and the feeling that I might explode in all directions at once.
Labels: fentanyl
Wednesday, May 10, 2006
Do the Borg eat ice cream?
This week I will be undergoing a new spate of tests including multiple CT scans and a comprehensive bone scan. This is actually good news: it is Dr. Hayes' opinion that since I am doing so much better now than I was in November when he first saw me, and he wants a new set of baseline tests.
Since I was doing so much better, I asked about whether or not it would be advisable to ride a motorcycle. I wanted to know specifically if the shaking engine would cause my pelvis to fall apart or if I might be ok given smooth roads and a careful rider at the controls.
His face contorted. "Weeeeeell," he said, "I don't want to tell you not to do it if it's something you really feel you want to do, but I'm a doctor and the consequences for you if the bike goes down are really bad."
We regarded each other.
"I won't tell you no, but all I'm saying is if you do, I don't want to know about it," he blurted.
I have since ridden behind Brian on his motorcycle twice, using the helmet that was specifically bought for me and which I'm pretty sure Brian won't want to use (due to the fact that it is pink). I am not graceful getting on and climbing off, but we are working on that and I'm sure I'll get better at it given practice.
Anyway, I have a spate of tests tomorrow, and next week will have a port inserted that will make it easier to draw blood and do the monthly infusion. I hate having an i.v. inserted almost more than anything. They have such difficulty getting the i.v. in the veins in my right arm/hand that when I have to have it done, it takes multiple tries, and is torturously painful. A port should make things easier, but getting the port inserted is some kind of surgery, and I'm nervous about it. Will they knock me out? I tend to react poorly to anesthesia. Will they try to sedate me but keep me conscious? That didn't work AT ALL during my liver biopsy, and the fentanyl patches might interfere with the kind of medication they want to use for that. I'm also slightly freaked out about having a tube in my arm at all times. It seems inhuman to have tubes and things winding their way around the interior of my body. Borg have tubes on the outside, but I can't help feeling that the process has begun.
After having my biological and technological distinctiveness added to the collective, I will immediately get to test out the new port by having my monthly infusion, because by that time they just won't have tortured me enough for one day. Then of course comes the monthly shot in the stomach, the one that renders me menopausal and is the cause of the hot flashes I've been suffering with some increase in frequency.
On the other hand, my acne has finally gone away. It could be my new skin care regimen, but it's probably the hormone therapy. My nausea also seems to finally be under control, although I have not regained my appetite for anything but sweets.
We are Borg; We demand your ice cream and leftover Easter candy.
Since I was doing so much better, I asked about whether or not it would be advisable to ride a motorcycle. I wanted to know specifically if the shaking engine would cause my pelvis to fall apart or if I might be ok given smooth roads and a careful rider at the controls.
His face contorted. "Weeeeeell," he said, "I don't want to tell you not to do it if it's something you really feel you want to do, but I'm a doctor and the consequences for you if the bike goes down are really bad."
We regarded each other.
"I won't tell you no, but all I'm saying is if you do, I don't want to know about it," he blurted.
I have since ridden behind Brian on his motorcycle twice, using the helmet that was specifically bought for me and which I'm pretty sure Brian won't want to use (due to the fact that it is pink). I am not graceful getting on and climbing off, but we are working on that and I'm sure I'll get better at it given practice.
Anyway, I have a spate of tests tomorrow, and next week will have a port inserted that will make it easier to draw blood and do the monthly infusion. I hate having an i.v. inserted almost more than anything. They have such difficulty getting the i.v. in the veins in my right arm/hand that when I have to have it done, it takes multiple tries, and is torturously painful. A port should make things easier, but getting the port inserted is some kind of surgery, and I'm nervous about it. Will they knock me out? I tend to react poorly to anesthesia. Will they try to sedate me but keep me conscious? That didn't work AT ALL during my liver biopsy, and the fentanyl patches might interfere with the kind of medication they want to use for that. I'm also slightly freaked out about having a tube in my arm at all times. It seems inhuman to have tubes and things winding their way around the interior of my body. Borg have tubes on the outside, but I can't help feeling that the process has begun.
After having my biological and technological distinctiveness added to the collective, I will immediately get to test out the new port by having my monthly infusion, because by that time they just won't have tortured me enough for one day. Then of course comes the monthly shot in the stomach, the one that renders me menopausal and is the cause of the hot flashes I've been suffering with some increase in frequency.
On the other hand, my acne has finally gone away. It could be my new skin care regimen, but it's probably the hormone therapy. My nausea also seems to finally be under control, although I have not regained my appetite for anything but sweets.
We are Borg; We demand your ice cream and leftover Easter candy.
Labels: bone scan, Brian, CT scan, Dr. Hayes, fentanyl, hormone therapy, hot flash, IV, liver, motorcycle, nausea, port, star trek
Monday, February 06, 2006
I Am Not a Ragdoll (or, Use the slide board, for the love of God!)
On floor 6A of the hospital I underwent ten sessions of radiation, any number of tests including X-rays and MRIs, and a liver biopsy, which were all terrible in their own way, but I'm going to spend a little time talking about transportation of people with hip fractures.
I know I've mentioned the unbearable, excruciating pain. They had to prescribe liquid morphine so that I could take something to make being moved bearable. There was also some kind of intravenous thing they were giving me that put me into a twilight state that was blessedly numbing. What they do to move a patient onto the transport table is that they get four to six people to grab the extra sheet under the patient (called the "draw sheet"). Everybody grabs an edge of the sheet and then they try to coordinate efforts and heave on the count of three. I found this method to be invariably awful.
On one of the occasions when I was to be moved, I started to cry and somebody promised that a "slide board," which is a slippery body-length board which the patient and draw sheet can be slid over, would make everything better. When the nurses and assistants and orderlies used the slide board, it worked amazingly well. There was no friction. My legs moved at the same time as my hips which moved at the same time as my upper torso...Unbelievable! The people in radiation were good at moving patients without causing any kind of pain (they're used to dealing with people who might have broken spinal things), but for the nursing staff on 6A to do it was amazing. I begged them to use it every time, but there were one or two people who insisted it didn't work or didn't make things any easier. The last example of this was the "kindly" man who directed my transfer when I had to go get my liver biopsied.
John was leaving to go back to Chattanooga, and I was already very sad about that. I don't see my brother often, and when he made plans to come and visit me in Detroit, I'm sure he didn't intend to spend the time visiting the hospital and packing books in my apartment. He looked at me funny when I said I was sorry his trip wasn't better.
Then, when the person directing my transfer made no moves to use the slideboard, I lost it and began sobbing uncontrollably, which never helps with the pain issue. "Now you have to relax," I was told. "It makes it worse if you don't relax."
What makes it worse, a**h***, is being told to f****** relax when you're about to heave and plop me onto a table, while telling me that if it hurts, it's somehow my fault.
Being moved was awful. I cried long after the pain subsided, though. I sat in the surgical waiting/recovery area and sobbed. Everything was awful. I hurt; John was leaving; I was frightened of the biopsy.
I was even more frightened when I found out that this is not something they knock you out for. It was an ultrasound-guided procedure, and I guess they needed me conscious so that they could tell me to not inhale at a certain point, since they insert the biopsy needle in between a couple of ribs.
That's right. They stab you in the chest while you are conscious, and ask you to please not squirm around as they're digging for the right spot.
"Don't worry," the anesthesiologist told me when I appeared apprehensive. "We'll give you a fentanyl drip and you won't feel much discomfort at all. He was not happy when I told him I was already on a fentanyl patch...I guess either he gave me something completely different or reduced the dosage, and the biopsy hurt like hell.
I will never again submit to such a procedure. They'd best not plan anything involving stabbing and searching unless I am totally unconcious for the procedure, because I will resist to the utmost of my ability, particularly if they try to claim that I "won't feel a thing!"
Liars.
They had to try separating my ribs twice, because the first time they jabbed, the needle bounced off. Then, after more careful poking and prodding with the fingers, they jabbed me in a gap between two ribs and inserted. They told me internal organs don't have nerve endings, so I shouldn't feel pain, but I swear I could feel the resistance as the needle encountered different kinds of tissue. So I experienced pain from the initial stab wound and knew exactly when it encountered the liver. I could feel it, and they had to work the needle around a bit to find the "right" spot indicated by the ultrasound.
After it was over and I was back in my room, the radiation team came to get me, but I refused to go. I'd had it; I didn't want to be moved any more, and I exercised my right as a patient to refuse treatment (they did make up for it later).
The next day, the doctor and his accompanying doctorlets were shocked to find out that the biopsy was very painful and that my chest still hurt where the needle went in. To his credit, the doctor was very concerned that I seemed to have anxiety about being seen by them, and that they weren't really able to do much to help me. I said what would help would be if they could always use the slide board to move me, so he agreed to write it as an order in my chart. Being moved was much better after that; I no longer dreaded being moved, I didn't have to take the liquid morphine as frequently, and I started having some positive feelings about the doctor and his interns.
Also, I stopped feeling shy about being moved with the slideboard. I vigilantly reminded people that it was there, and that they were to use it or I wasn't going wherever they wanted to take me.
To be continued...
I know I've mentioned the unbearable, excruciating pain. They had to prescribe liquid morphine so that I could take something to make being moved bearable. There was also some kind of intravenous thing they were giving me that put me into a twilight state that was blessedly numbing. What they do to move a patient onto the transport table is that they get four to six people to grab the extra sheet under the patient (called the "draw sheet"). Everybody grabs an edge of the sheet and then they try to coordinate efforts and heave on the count of three. I found this method to be invariably awful.
On one of the occasions when I was to be moved, I started to cry and somebody promised that a "slide board," which is a slippery body-length board which the patient and draw sheet can be slid over, would make everything better. When the nurses and assistants and orderlies used the slide board, it worked amazingly well. There was no friction. My legs moved at the same time as my hips which moved at the same time as my upper torso...Unbelievable! The people in radiation were good at moving patients without causing any kind of pain (they're used to dealing with people who might have broken spinal things), but for the nursing staff on 6A to do it was amazing. I begged them to use it every time, but there were one or two people who insisted it didn't work or didn't make things any easier. The last example of this was the "kindly" man who directed my transfer when I had to go get my liver biopsied.
John was leaving to go back to Chattanooga, and I was already very sad about that. I don't see my brother often, and when he made plans to come and visit me in Detroit, I'm sure he didn't intend to spend the time visiting the hospital and packing books in my apartment. He looked at me funny when I said I was sorry his trip wasn't better.
Then, when the person directing my transfer made no moves to use the slideboard, I lost it and began sobbing uncontrollably, which never helps with the pain issue. "Now you have to relax," I was told. "It makes it worse if you don't relax."
What makes it worse, a**h***, is being told to f****** relax when you're about to heave and plop me onto a table, while telling me that if it hurts, it's somehow my fault.
Being moved was awful. I cried long after the pain subsided, though. I sat in the surgical waiting/recovery area and sobbed. Everything was awful. I hurt; John was leaving; I was frightened of the biopsy.
I was even more frightened when I found out that this is not something they knock you out for. It was an ultrasound-guided procedure, and I guess they needed me conscious so that they could tell me to not inhale at a certain point, since they insert the biopsy needle in between a couple of ribs.
That's right. They stab you in the chest while you are conscious, and ask you to please not squirm around as they're digging for the right spot.
"Don't worry," the anesthesiologist told me when I appeared apprehensive. "We'll give you a fentanyl drip and you won't feel much discomfort at all. He was not happy when I told him I was already on a fentanyl patch...I guess either he gave me something completely different or reduced the dosage, and the biopsy hurt like hell.
I will never again submit to such a procedure. They'd best not plan anything involving stabbing and searching unless I am totally unconcious for the procedure, because I will resist to the utmost of my ability, particularly if they try to claim that I "won't feel a thing!"
Liars.
They had to try separating my ribs twice, because the first time they jabbed, the needle bounced off. Then, after more careful poking and prodding with the fingers, they jabbed me in a gap between two ribs and inserted. They told me internal organs don't have nerve endings, so I shouldn't feel pain, but I swear I could feel the resistance as the needle encountered different kinds of tissue. So I experienced pain from the initial stab wound and knew exactly when it encountered the liver. I could feel it, and they had to work the needle around a bit to find the "right" spot indicated by the ultrasound.
After it was over and I was back in my room, the radiation team came to get me, but I refused to go. I'd had it; I didn't want to be moved any more, and I exercised my right as a patient to refuse treatment (they did make up for it later).
The next day, the doctor and his accompanying doctorlets were shocked to find out that the biopsy was very painful and that my chest still hurt where the needle went in. To his credit, the doctor was very concerned that I seemed to have anxiety about being seen by them, and that they weren't really able to do much to help me. I said what would help would be if they could always use the slide board to move me, so he agreed to write it as an order in my chart. Being moved was much better after that; I no longer dreaded being moved, I didn't have to take the liquid morphine as frequently, and I started having some positive feelings about the doctor and his interns.
Also, I stopped feeling shy about being moved with the slideboard. I vigilantly reminded people that it was there, and that they were to use it or I wasn't going wherever they wanted to take me.
To be continued...
Labels: biopsy, doctorlets, fentanyl, fracture, hip, hospital, John, liver, morphine, MRI, radiation, slide board, x-rays
