Friday, June 15, 2007
Sleep: the Dream That Eludes
I had a nasty cold last week (which now Brian seems to be getting). It has progressed to a nagging, unproductive cough, robbing me of sleep and sanity. I sound awful, and not just because of the retainers. It is an effort to squeeze sound out of my throat. I showed up for work yesterday because I had four meetings I really didn't think I could skip; people there keep looking at me funny.
I was coughing at infusion on Tuesday, so the nurses had me talk to a PA. The PA asked me a series of questions about my cough and thought it might be a "reactive airway" thing, and asked if I'd ever had asthma. She set me up with an appointment with my general practitioner for Wednesday evening--I went to the doctor and wrote down as my reason for visit: "horrible, sleep-depriving cough." She gave me a boatload of medications (prednisone, an antibiotic, special cough medicine with a narcotic) and promised I would be able to sleep that night. The codeine made me loopy, I saw weird stuff when I closed my eyes, but I could not stop coughing and my brain would not shut off.
I'm still supposed to go for a chest ex-ray, even though everyone agrees my lungs sound ok. I just can't breathe without hacking. I am wary of trying to drive anywhere, even to get the chest ex-ray. I know that I am impaired.
I can't even think of a clever way to conclude this post. It looks like I will not be traveling to Cleveland this weekend (it would have worked out great...seeing my dad on Father's Day...quel bummer). I am going to try to drag my carcass to Race for the Cure Saturday. Maybe I should call and beg the doctor for either some kind of inhaler or a horse tranquilizer.
I was coughing at infusion on Tuesday, so the nurses had me talk to a PA. The PA asked me a series of questions about my cough and thought it might be a "reactive airway" thing, and asked if I'd ever had asthma. She set me up with an appointment with my general practitioner for Wednesday evening--I went to the doctor and wrote down as my reason for visit: "horrible, sleep-depriving cough." She gave me a boatload of medications (prednisone, an antibiotic, special cough medicine with a narcotic) and promised I would be able to sleep that night. The codeine made me loopy, I saw weird stuff when I closed my eyes, but I could not stop coughing and my brain would not shut off.
I'm still supposed to go for a chest ex-ray, even though everyone agrees my lungs sound ok. I just can't breathe without hacking. I am wary of trying to drive anywhere, even to get the chest ex-ray. I know that I am impaired.
I can't even think of a clever way to conclude this post. It looks like I will not be traveling to Cleveland this weekend (it would have worked out great...seeing my dad on Father's Day...quel bummer). I am going to try to drag my carcass to Race for the Cure Saturday. Maybe I should call and beg the doctor for either some kind of inhaler or a horse tranquilizer.
Labels: Brian, Cleveland, codeine, Dad, infusion, prednisone, Race for the Cure, sick days
Tuesday, November 07, 2006
Back Behind the Wheel: driving the porcelain bus with stops at Yakville, Puketon, and Barfburg
I have no idea why. I stayed home from work (I called in, using one of my SHORT term sick days--which is actually kind of rare for me) and prayed for sleep to avoid having to deal with the queasiness and excess salivation that precedes an "episode."
Several occasions saw me drooling uncontrollably into the toilet. Nobody ever talks about that particular symptom of nausea. It's never that much of a surprise to throw up because of the whole saliva thing. When I slept I found myself embroiled in very violent RPG videogames of my dreaming brain's device. (It turns out that it's not actually that much fun to be Sydney Bristow, particularly not when everybody is shooting at you.)
Today at infusion they gave me more drugs--this time I got kytril, which is a very good anti-emetic, and zantac for my stomach. They did not make me swallow pills, either, which is probably a good thing.
When I complained about my sinuses, I also got an antibiotic for an infection. I had a cold last week and the sinus agony is living on. I don't have a fever, but I typically don't for sinus infections. Anyway, I feel much better and have a prescription for a couple of days' worth of kytril which I should take whether I feel nauseous or not. If you can stave it off it's better than trying to treat it once the nausea is rearing its ugly head and you are once again behind the porcelain wheel.
Several occasions saw me drooling uncontrollably into the toilet. Nobody ever talks about that particular symptom of nausea. It's never that much of a surprise to throw up because of the whole saliva thing. When I slept I found myself embroiled in very violent RPG videogames of my dreaming brain's device. (It turns out that it's not actually that much fun to be Sydney Bristow, particularly not when everybody is shooting at you.)
Today at infusion they gave me more drugs--this time I got kytril, which is a very good anti-emetic, and zantac for my stomach. They did not make me swallow pills, either, which is probably a good thing.
When I complained about my sinuses, I also got an antibiotic for an infection. I had a cold last week and the sinus agony is living on. I don't have a fever, but I typically don't for sinus infections. Anyway, I feel much better and have a prescription for a couple of days' worth of kytril which I should take whether I feel nauseous or not. If you can stave it off it's better than trying to treat it once the nausea is rearing its ugly head and you are once again behind the porcelain wheel.
Labels: infection, infusion, kytril, nausea, sick days, videogames, zantac
Friday, September 22, 2006
Woohoo! I'm a Case Study! and Crap...I Hate Human Resources...
At my appointment this past Wednesday, Lita (my oncologist's nurse practitioner) told me that she had spoken at a conference in Chicago, where she mentioned me as an example of how well newer cancer treatments can work. I'm a case study!
Of course my name was not used, to protect my identity.
Dr. Hayes mentioned that he had recently had a conversation with Dr. Smith (the attending physician for the floor of the hospital where I spent the first two weeks of December), who was not at all certain that I'd turn out very well. "Oh, that poor lady," Dr. Smith took a dim view. I can imagine why he thought my case was dire: I was very, very ill in December, and tended to immediately vomit whenever he or his troupe of doctorlets came to visit me. I had what Lita describes as "the worst case of gastritis" she had ever seen, had a hip that broke as a result of metastatic disease, was undergoing radiation, and couldn't be moved without copious amounts of morphine.
What a very sad sack I was.
Well, things have turned around completely. Last weekend Brian and I went to visit my relatives in Cleveland, and not only was I able to stay on Aunt Barb's second floor (thanks for the hospitality, Aunt Barb), but I was able to show off my new, walker-free self to Grandma. "This is what physical therapy can do," I tried to tell her. Grandma is 93 and doesn't want to go to physical therapy. I can't say I blame her, but she does have exercises she could be doing at home. (Also, Grandma needs to wear her compression stockings. I highly recommend the toeless ones by Juzo...they included a little paper slipper that made them very easy for Brian to put them on my feet, after being shown how by the occupational therapist.) I was a little tired after walking back to the car from Jacob's Field on Friday, and walking around the Cleveland Zoo on Saturday definitely made me sore, but it was more the result of lots of walking after long inactivity, and nothing like the hip pain I experienced last year before being properly diagnosed.
Dr. Hayes also again mentioned the idea of taking a break from chemotherapy. I am more disposed to the idea this time. I will be undergoing more rounds of chemo and then in November will be re-scanned. If the downward trend on my lab results continues, and the tumors in my liver shrink further (to non-scary sizes: the largest is still around 4 centimeters), then I will be taken off Abraxane for as long as things appear to be ok. I will continue receiving Avastin and Zometa, which do not have the kind of side effects that chemotherapy does. I'm disappointed to have to continue going for infusions, but being able to grow my hair and stop getting Neupogen shots (which I've been weaseling out of having Brian give me) will be very nice. Lita called and left the latest lab results: the tumor marker which had gone down to 16.1 is now 15. The one which had gone down to 65 is now 45. (I will try to amend this with more accurate information when I get home.)
Now that things are going so well and that I am back at work full time, I've had a human resources snafu thrust upon me. I am very lucky in that my benefits allow me a very large number of "extended sick leave" hours at full pay. Unfortunately, I have only 20 of those hours remaining. I can use extended sick leave hours at half pay (which only contributes half to my retirement and benefits), or if I don't use extended sick leave hours at all for thirty days, they will be renewed to 1056 hours available.
However, those 1056 hours cannot be used for the same occurrence of an illness. Basically this means that in order to use the renewed extended sick leave hours, I have to develop some OTHER catastrophic medical situation aside from the chronic disease which for which I will be undergoing treatment for the rest of my life.
I could use my fifteen days of short term sick leave for my infusion appointments (these tend to take six hours or more) and other doctor's appointments. However, since I get infused roughly three times a month, within less than five months my sick leave will be gone for the year. Also, due to the library's interpretation of the university's Standard Practice Guide, taking three sick days per month could, in three months' time, give my supervisor (who, mercifully, is not interested in punative tracking of my schedule) grounds to write me up and fire me.
I could use my vacation time--which did not accrue while I was on extended sick leave--for my appointments, however I get only two vacation days per month and it hardly seems fair to deny me my vacation time in entirety because of a medical condition.
I could take time off without pay, which isn't appealing for the same reasons taking half-pay extended sick leave isn't a great option. Or I could rework my schedule to work longer hours on the other days of the week that I am not receiving medications intraveinously. Sure, that makes sense--let's have somebody on chemotherapy working longer hours to make up for it.
This is all patently ridiculous. I'm not a malingerer; I work hard and contribute positively to the library. I feel like I'm being punished for something utterly out of my control: I didn't choose to be afflicted by a chronic condition, and if I could magically stop going to as many appointments as I do, I'd be thrilled. However, there's nothing I can do about it, and I feel like the university's policy is designed to keep them from having to pay for somebody with a chronic illness.
Grounds for dispute under the Americans with Disabilities Act? I don't know.
Of course my name was not used, to protect my identity.
Dr. Hayes mentioned that he had recently had a conversation with Dr. Smith (the attending physician for the floor of the hospital where I spent the first two weeks of December), who was not at all certain that I'd turn out very well. "Oh, that poor lady," Dr. Smith took a dim view. I can imagine why he thought my case was dire: I was very, very ill in December, and tended to immediately vomit whenever he or his troupe of doctorlets came to visit me. I had what Lita describes as "the worst case of gastritis" she had ever seen, had a hip that broke as a result of metastatic disease, was undergoing radiation, and couldn't be moved without copious amounts of morphine.
What a very sad sack I was.
Well, things have turned around completely. Last weekend Brian and I went to visit my relatives in Cleveland, and not only was I able to stay on Aunt Barb's second floor (thanks for the hospitality, Aunt Barb), but I was able to show off my new, walker-free self to Grandma. "This is what physical therapy can do," I tried to tell her. Grandma is 93 and doesn't want to go to physical therapy. I can't say I blame her, but she does have exercises she could be doing at home. (Also, Grandma needs to wear her compression stockings. I highly recommend the toeless ones by Juzo...they included a little paper slipper that made them very easy for Brian to put them on my feet, after being shown how by the occupational therapist.) I was a little tired after walking back to the car from Jacob's Field on Friday, and walking around the Cleveland Zoo on Saturday definitely made me sore, but it was more the result of lots of walking after long inactivity, and nothing like the hip pain I experienced last year before being properly diagnosed.
Dr. Hayes also again mentioned the idea of taking a break from chemotherapy. I am more disposed to the idea this time. I will be undergoing more rounds of chemo and then in November will be re-scanned. If the downward trend on my lab results continues, and the tumors in my liver shrink further (to non-scary sizes: the largest is still around 4 centimeters), then I will be taken off Abraxane for as long as things appear to be ok. I will continue receiving Avastin and Zometa, which do not have the kind of side effects that chemotherapy does. I'm disappointed to have to continue going for infusions, but being able to grow my hair and stop getting Neupogen shots (which I've been weaseling out of having Brian give me) will be very nice. Lita called and left the latest lab results: the tumor marker which had gone down to 16.1 is now 15. The one which had gone down to 65 is now 45. (I will try to amend this with more accurate information when I get home.)
Now that things are going so well and that I am back at work full time, I've had a human resources snafu thrust upon me. I am very lucky in that my benefits allow me a very large number of "extended sick leave" hours at full pay. Unfortunately, I have only 20 of those hours remaining. I can use extended sick leave hours at half pay (which only contributes half to my retirement and benefits), or if I don't use extended sick leave hours at all for thirty days, they will be renewed to 1056 hours available.
However, those 1056 hours cannot be used for the same occurrence of an illness. Basically this means that in order to use the renewed extended sick leave hours, I have to develop some OTHER catastrophic medical situation aside from the chronic disease which for which I will be undergoing treatment for the rest of my life.
I could use my fifteen days of short term sick leave for my infusion appointments (these tend to take six hours or more) and other doctor's appointments. However, since I get infused roughly three times a month, within less than five months my sick leave will be gone for the year. Also, due to the library's interpretation of the university's Standard Practice Guide, taking three sick days per month could, in three months' time, give my supervisor (who, mercifully, is not interested in punative tracking of my schedule) grounds to write me up and fire me.
I could use my vacation time--which did not accrue while I was on extended sick leave--for my appointments, however I get only two vacation days per month and it hardly seems fair to deny me my vacation time in entirety because of a medical condition.
I could take time off without pay, which isn't appealing for the same reasons taking half-pay extended sick leave isn't a great option. Or I could rework my schedule to work longer hours on the other days of the week that I am not receiving medications intraveinously. Sure, that makes sense--let's have somebody on chemotherapy working longer hours to make up for it.
This is all patently ridiculous. I'm not a malingerer; I work hard and contribute positively to the library. I feel like I'm being punished for something utterly out of my control: I didn't choose to be afflicted by a chronic condition, and if I could magically stop going to as many appointments as I do, I'd be thrilled. However, there's nothing I can do about it, and I feel like the university's policy is designed to keep them from having to pay for somebody with a chronic illness.
Grounds for dispute under the Americans with Disabilities Act? I don't know.
Labels: Abraxane, Aunt Barb, Avastin, Brian, chemo, Cleveland, doctorlets, Dr. Hayes, Grandma, hip, Lita, liver, morphine, nausea, Neupogen, physical therapy, radiation, sick days, Zometa
