Tuesday, May 13, 2008
I Got Trapped in an Episode of "House"
Only one in which there was no brilliant, cranky Head Doctor who would come up with the solution and heal me of my infirmities.
A couple of weeks ago, during a visit by my mom on Sunday, I got very cold. Teeth-chatteringly cold. After our card game was over and she went home, I went to bed and huddled under many blankets. Brian discovered that I actually had a pretty high fever. So he called the oncologist on call, who suggested taking some tylenol and watching my temperature, and if there was no improvement, come to the hospital in the morning.
The next morning there wasn't an improvement (although I felt immensely better), so my nurse practitioner told me to come in, have blood drawn, get a chest ex-ray, and then go up to "bedside" in the infusion area (a opposed to the area where the infusion chairs are), where they got all freaked out about my "shortness of breath" (with my stomach all bloated, of course my lungs can't fill up really well), so they did the test where they do your blood pressure lying down, then sitting, then standing. They did this several times. Of course my blood pressure is very low to begin with, but it's especially erratic since they have to use either my right forearm or my leg.
Their results were so alarming that they decided I needed a CT scan of my chest. This makes me cry, because it means insertion of an IV. They eventually get the thing inserted, and then it turns out that the only CT machine available is in the ER...when I get down to ER, the CT technicians look at my IV and say, "Oh no, that one's too small." Blarrrrrg. So I get to cry again as they stab me again in the arm. They made a mess of it, too, and got blood on my fuzzy "Snoop Dog" hat. It also turns out that I have developed an allergy to the iodine conrast, so I couldn't breathe for a short while after the test. They didn't believe me and thought I was just "freaking out."
So they take me back to "bedside," where my oncologist agrees that I should be admitted.
Sadly they could not admit me directly to a room, but I had to go through ER. So I sat in triage in ER for several hours. Then a room opened up in ER and I had an EKG, many blood tests (with blood taken both from my port and from my arm) The ER doctor came in and told me my CT scan showed a pulmonary embolism. Then, no it was actually a "chronic embolism" which means it was a blood clot that was surrounded by other tissue and had been there for a long time and wasn't doing any harm, but perhaps I should have a mesh thingy surgically implanted to keep blood clots from my legs from reaching any vital organs.
Then they finally admitted me to the hospital proper, and I was put into a double room with a diabetic woman who had been there a month and complained constantly.
I can't say I blame her.
So then the doctors decided I didn't have an embolism at all, and that my low blood pressure/shortness of breath might be pneumonia or some kind of viral or bacterial infection. So they started giving me crazy amounts of antibiotics, at which point I developed horrible digestive issues. They had to bring me a bedside commode. They thought maybe whatever infection I was dealing with was making me anemic, so they decided to give me a blood transfusion. (It turns out I am type A-positive, which I did not know before).
They kept coming to test my blood--they had to take blood both from my port, and from another spot in my arm (in case it was the port that was infected)--and every test they wanted to do they told me, "We'll have the results in three days." But you already TOOK blood for tests and it's been three days....where are those results? Grrrrr.
I developed a dry cough (they were giving me oxygen at night because I was having some trouble getting enough air), so the respiratory people got all excited and wanted to give me this test where they made me breathe albuterol through a tube and then after a few minutes of this, spit sputum into a cup for testing. Well, my cough was a DRY cough. They were never able to get a sample from me, although they tried twice.
The freaky thing is that they also made my roommate do the albuterol thing and try to spit into the little cup, and then when she got discharged (after a month, the poor lady), and then they did it to the next roommate I had. I wonder if there was something going around the hospital, or what.
After about seven days of misery and crappy food and trying (sometimes unsuccessfully) to make it to the commode, they sent a physical therapist, who brought me a walker, a theraband, and a little pedal thing that sits on the floor and is sort of like a thing that makes whatever chair you're in into a recumbent bicycle. Great. Thanks, now I get to have a walker again. And the theraband was for my arms. I took the walker and theraband home; I'm not sure if I was supposed to keep the pedal thing or not, but I decided it was stupid and the hospital PT was useless. (I'm now getting PT at home, and she actually gave me USEFUL exercises to do.)
They never did decide what I might be infected with...if it was bacterial, viral, side effects from Xeloda, or what. So I got discharged after about nine days, just in time to go to Brian's graduation, weaker than I have been in a long time, coughing, and wearing a diaper.
Luckily I am getting stronger. I'm still wearing a diaper, though (at least I am today)...and I've got a bedside commode (which I have not needed yet, thank goodness because I've been sleeping very deeply), a walker for very long walks, and my feet swell up like sausages. I ranted to my oncologist and expressed relief that all the tests at least confirmed that I do not have EBOLA. I don't think he appreciated my outrage, because of course they've got my best interests in mind and are concerned for my welfare.
I FELT BETTER BEFORE BEING HOSPITALIZED.
Grrrrr. I hope there WAS some kind of bug floating around my system that got killed, because I'm pissed off and hate having to try to rebuild my strength and deal with the cough and the digestive issues. OH, also food is now disgusting to me I think because of the medications I've been given (usually antibiotics do this) or maybe the Xeloda itself is messing up my appetite. I don't have any nausea, it's just that when I put food into my mouth, it tastes all gross and metallic and I lose interest in swallowing it. It's even worse when there's a distinctive texture. It's sort of like I'll chew a mouthful of food, and then suddenly I realize that I have this nasty blob of chewed food in my mouth that I can't quite bring myself to swallow, but you can't spit it out.
I bet House could figure it out.
A couple of weeks ago, during a visit by my mom on Sunday, I got very cold. Teeth-chatteringly cold. After our card game was over and she went home, I went to bed and huddled under many blankets. Brian discovered that I actually had a pretty high fever. So he called the oncologist on call, who suggested taking some tylenol and watching my temperature, and if there was no improvement, come to the hospital in the morning.
The next morning there wasn't an improvement (although I felt immensely better), so my nurse practitioner told me to come in, have blood drawn, get a chest ex-ray, and then go up to "bedside" in the infusion area (a opposed to the area where the infusion chairs are), where they got all freaked out about my "shortness of breath" (with my stomach all bloated, of course my lungs can't fill up really well), so they did the test where they do your blood pressure lying down, then sitting, then standing. They did this several times. Of course my blood pressure is very low to begin with, but it's especially erratic since they have to use either my right forearm or my leg.
Their results were so alarming that they decided I needed a CT scan of my chest. This makes me cry, because it means insertion of an IV. They eventually get the thing inserted, and then it turns out that the only CT machine available is in the ER...when I get down to ER, the CT technicians look at my IV and say, "Oh no, that one's too small." Blarrrrrg. So I get to cry again as they stab me again in the arm. They made a mess of it, too, and got blood on my fuzzy "Snoop Dog" hat. It also turns out that I have developed an allergy to the iodine conrast, so I couldn't breathe for a short while after the test. They didn't believe me and thought I was just "freaking out."
So they take me back to "bedside," where my oncologist agrees that I should be admitted.
Sadly they could not admit me directly to a room, but I had to go through ER. So I sat in triage in ER for several hours. Then a room opened up in ER and I had an EKG, many blood tests (with blood taken both from my port and from my arm) The ER doctor came in and told me my CT scan showed a pulmonary embolism. Then, no it was actually a "chronic embolism" which means it was a blood clot that was surrounded by other tissue and had been there for a long time and wasn't doing any harm, but perhaps I should have a mesh thingy surgically implanted to keep blood clots from my legs from reaching any vital organs.
Then they finally admitted me to the hospital proper, and I was put into a double room with a diabetic woman who had been there a month and complained constantly.
I can't say I blame her.
So then the doctors decided I didn't have an embolism at all, and that my low blood pressure/shortness of breath might be pneumonia or some kind of viral or bacterial infection. So they started giving me crazy amounts of antibiotics, at which point I developed horrible digestive issues. They had to bring me a bedside commode. They thought maybe whatever infection I was dealing with was making me anemic, so they decided to give me a blood transfusion. (It turns out I am type A-positive, which I did not know before).
They kept coming to test my blood--they had to take blood both from my port, and from another spot in my arm (in case it was the port that was infected)--and every test they wanted to do they told me, "We'll have the results in three days." But you already TOOK blood for tests and it's been three days....where are those results? Grrrrr.
I developed a dry cough (they were giving me oxygen at night because I was having some trouble getting enough air), so the respiratory people got all excited and wanted to give me this test where they made me breathe albuterol through a tube and then after a few minutes of this, spit sputum into a cup for testing. Well, my cough was a DRY cough. They were never able to get a sample from me, although they tried twice.
The freaky thing is that they also made my roommate do the albuterol thing and try to spit into the little cup, and then when she got discharged (after a month, the poor lady), and then they did it to the next roommate I had. I wonder if there was something going around the hospital, or what.
After about seven days of misery and crappy food and trying (sometimes unsuccessfully) to make it to the commode, they sent a physical therapist, who brought me a walker, a theraband, and a little pedal thing that sits on the floor and is sort of like a thing that makes whatever chair you're in into a recumbent bicycle. Great. Thanks, now I get to have a walker again. And the theraband was for my arms. I took the walker and theraband home; I'm not sure if I was supposed to keep the pedal thing or not, but I decided it was stupid and the hospital PT was useless. (I'm now getting PT at home, and she actually gave me USEFUL exercises to do.)
They never did decide what I might be infected with...if it was bacterial, viral, side effects from Xeloda, or what. So I got discharged after about nine days, just in time to go to Brian's graduation, weaker than I have been in a long time, coughing, and wearing a diaper.
Luckily I am getting stronger. I'm still wearing a diaper, though (at least I am today)...and I've got a bedside commode (which I have not needed yet, thank goodness because I've been sleeping very deeply), a walker for very long walks, and my feet swell up like sausages. I ranted to my oncologist and expressed relief that all the tests at least confirmed that I do not have EBOLA. I don't think he appreciated my outrage, because of course they've got my best interests in mind and are concerned for my welfare.
I FELT BETTER BEFORE BEING HOSPITALIZED.
Grrrrr. I hope there WAS some kind of bug floating around my system that got killed, because I'm pissed off and hate having to try to rebuild my strength and deal with the cough and the digestive issues. OH, also food is now disgusting to me I think because of the medications I've been given (usually antibiotics do this) or maybe the Xeloda itself is messing up my appetite. I don't have any nausea, it's just that when I put food into my mouth, it tastes all gross and metallic and I lose interest in swallowing it. It's even worse when there's a distinctive texture. It's sort of like I'll chew a mouthful of food, and then suddenly I realize that I have this nasty blob of chewed food in my mouth that I can't quite bring myself to swallow, but you can't spit it out.
I bet House could figure it out.
Labels: Brian, CT scan, hospital, mom, physical therapy, Xeloda
Friday, December 28, 2007
Par-Tay
I think people had a good time. There were many foods. Grandma (who actually expressed shock that I could cook a turkey) would have been proud of the spread that got laid out.
Everything got done--I even managed to finish some gift knitting while the turkey was in the oven. Well, almost everything. I still need to take care of sending the remote gifts. Oh well.
My back spasms have calmed down and my flute playing at church went reasonably well. I can't say it was great, but nobody noticed anything amiss.
We are now stripping wallpaper from the kitchen walls. Sadly, there will not be enough time to totally strip and paint, but I don't care. I'm relieved to see the paisley coming off in stretchy vinyl sheets and lying in tatters on the kitchen floor. Whoever decorated this place before we moved in was demented and color-blind.
I had a CT scan on the 26th and an upcoming bone scan this Thursday; presumably I will get my results January 8. I have also started physical therapy again. I am sore, but in a way that is probably good. I'd like to be able to comfortably tie my shoes and lift my legs into the car without having to use my hands to do it. Today I had a therapist throwing a foam ball at me as I balanced on a teetering board. I'm not entirely convinced this will help with my goals, but I'm getting better at catching a foam ball while balancing on a teetering board.
Happy New Year! Pop on over for some spinach dip and sparkling grape juice, if you like. We might be awake long enough to watch the ball drop.
Everything got done--I even managed to finish some gift knitting while the turkey was in the oven. Well, almost everything. I still need to take care of sending the remote gifts. Oh well.
My back spasms have calmed down and my flute playing at church went reasonably well. I can't say it was great, but nobody noticed anything amiss.
We are now stripping wallpaper from the kitchen walls. Sadly, there will not be enough time to totally strip and paint, but I don't care. I'm relieved to see the paisley coming off in stretchy vinyl sheets and lying in tatters on the kitchen floor. Whoever decorated this place before we moved in was demented and color-blind.
I had a CT scan on the 26th and an upcoming bone scan this Thursday; presumably I will get my results January 8. I have also started physical therapy again. I am sore, but in a way that is probably good. I'd like to be able to comfortably tie my shoes and lift my legs into the car without having to use my hands to do it. Today I had a therapist throwing a foam ball at me as I balanced on a teetering board. I'm not entirely convinced this will help with my goals, but I'm getting better at catching a foam ball while balancing on a teetering board.
Happy New Year! Pop on over for some spinach dip and sparkling grape juice, if you like. We might be awake long enough to watch the ball drop.
Labels: bone scan, Christmas, condominium, CT scan, flute, Grandma, physical therapy, wallpaper
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
Wednesday, May 24, 2006
Cycle trauma
The other day at the appointment with Dr. Rodriguez (who is a physical rehabilitation specialist), it was determined that I am well enough now to not require further visits with her, and that should I desire physical therapy in the future or if anything comes up, I could see her "as needed," but for now I should consider myself as being graduated from physical therapy.
I asked about the CT scans she had ordered of my upper spine, since I had complained of some neck issues which seem to be causing numbness in my thumb when I turn my head to the left. It turns out there are metastatic lesions on that part of my spine as well, which isn't something she can really address.
Brian brought up the subject of whether or not it would be safe to ride a motorcycle, which she denied vehemently. I believe he was asking if RIDING could cause any problems, but she focused on what happens when you fall off or get hit by a car.
Of course nobody thinks that will happen.
Yesterday on the way home from the infusion, Brian asked what I thought about what she had said. There was a yellow bike ahead of us. I said I think that riding itself won't necessarily shake me to pieces and that the doctor is correct in that the consequences of actually having an accident are likely to be worse for me than for other people, but that it might be possible to ride safely. Brian also said he agreed completely with the doctor, that riding a bike isn't as safe as being in a car. It's true; you're totally exposed. But it might be possible to find a relatively safe place to go to ride where bikers are expected and common. We agreed Hines Park would be a good place to ride. At that moment the traffic got a little wonky. Things slowed down and we shifted lanes a little bit only to see that the yellow bike we had seen lay smashed in the middle of an intersection. The rider was lying face down on the pavement.
"Oh my God."
"Holy shit."
Brian pulled to the right and hopped out of the car to see if the rider was ok. I called 9-1-1, only to regret I didn't know exactly what part of 153 we were on. The operator told me they were getting other calls, so I thanked her and hung up. The rider appeared to be breathing, and I think had been advised to lay still in case of a neck or back injury. There wasn't much else we could do. When a police car pulled up to take control of the intersection, Brian got back in the car and we continued down the road. Brian said that the rider's face was smashed up from not wearing a more protective helmet.
Brian went out riding after we got home. I told him to be careful and was relieved when he got home in one piece. He later told me that the smashed yellow bike was still in the intersection but that the car and the rider were gone.
He was still thinking about the accident this morning.
I asked about the CT scans she had ordered of my upper spine, since I had complained of some neck issues which seem to be causing numbness in my thumb when I turn my head to the left. It turns out there are metastatic lesions on that part of my spine as well, which isn't something she can really address.
Brian brought up the subject of whether or not it would be safe to ride a motorcycle, which she denied vehemently. I believe he was asking if RIDING could cause any problems, but she focused on what happens when you fall off or get hit by a car.
Of course nobody thinks that will happen.
Yesterday on the way home from the infusion, Brian asked what I thought about what she had said. There was a yellow bike ahead of us. I said I think that riding itself won't necessarily shake me to pieces and that the doctor is correct in that the consequences of actually having an accident are likely to be worse for me than for other people, but that it might be possible to ride safely. Brian also said he agreed completely with the doctor, that riding a bike isn't as safe as being in a car. It's true; you're totally exposed. But it might be possible to find a relatively safe place to go to ride where bikers are expected and common. We agreed Hines Park would be a good place to ride. At that moment the traffic got a little wonky. Things slowed down and we shifted lanes a little bit only to see that the yellow bike we had seen lay smashed in the middle of an intersection. The rider was lying face down on the pavement.
"Oh my God."
"Holy shit."
Brian pulled to the right and hopped out of the car to see if the rider was ok. I called 9-1-1, only to regret I didn't know exactly what part of 153 we were on. The operator told me they were getting other calls, so I thanked her and hung up. The rider appeared to be breathing, and I think had been advised to lay still in case of a neck or back injury. There wasn't much else we could do. When a police car pulled up to take control of the intersection, Brian got back in the car and we continued down the road. Brian said that the rider's face was smashed up from not wearing a more protective helmet.
Brian went out riding after we got home. I told him to be careful and was relieved when he got home in one piece. He later told me that the smashed yellow bike was still in the intersection but that the car and the rider were gone.
He was still thinking about the accident this morning.
Labels: accident, CT scan, Dr. Rodriguez, infusion, motorcycle, physical therapy
Monday, April 17, 2006
Unwelcome surprise: how my hospital bill nearly put me in the hospital
My insurance company sends me periodic statements when they get billed for service by hospitals, physicians, medical professionals, et al. indicating how much money they asked for, how much they actually got, and how much I might owe.
Usually they get far less than they ask for but they seem to be ok with that.
If I ever do have to pay anything, it's usually either a $15 copay or a $30 copay for something I didn't get a referral for. I also once had a statement saying I owed $50, and that turns out to be the amount I owe for ER service if I don't manage to get a referral in the middle of an emergency. I went to the ER the day after I broke my hip and they didn't actually bill me that day, so I got a statement from M-Care telling me that I owed $50. I didn't argue; it's printed on my M-Care card.
This is why when I got a bill from the hospital for $2545.80, I nearly had a coronary, which would have required paying another $50 for an emergency visit to the ER. I got very depressed about this because I was anticipating a nice tax refund from the IRS, and am hoping to buy a new car soon because we have two very unreliable vehicles, and it's time to get something that doesn't make funny noises that make you wonder "Did I ever hear that noise before? Is that normal? Will I be able to afford the next repair bill on this thing?"
$2545.80. It came on Friday and informed me I had fourteen days to pay in full, or it would go to a collection agency, so naturally I was unable to do anything about it and had to worry all weekend.
This morning I called the hospital, and they weren't really able to tell me what the payment was for. So after physical therapy (I got treated once more with electrodes to the butt...my superpowers are going to manifest this time for sure) today I called the insurance company. After being put on hold for several minutes, the lady's conclusion was that it looked like a filing error and she said she would call me back if she found out otherwise.
I hope the phone doesn't ring soon.
Usually they get far less than they ask for but they seem to be ok with that.
If I ever do have to pay anything, it's usually either a $15 copay or a $30 copay for something I didn't get a referral for. I also once had a statement saying I owed $50, and that turns out to be the amount I owe for ER service if I don't manage to get a referral in the middle of an emergency. I went to the ER the day after I broke my hip and they didn't actually bill me that day, so I got a statement from M-Care telling me that I owed $50. I didn't argue; it's printed on my M-Care card.
This is why when I got a bill from the hospital for $2545.80, I nearly had a coronary, which would have required paying another $50 for an emergency visit to the ER. I got very depressed about this because I was anticipating a nice tax refund from the IRS, and am hoping to buy a new car soon because we have two very unreliable vehicles, and it's time to get something that doesn't make funny noises that make you wonder "Did I ever hear that noise before? Is that normal? Will I be able to afford the next repair bill on this thing?"
$2545.80. It came on Friday and informed me I had fourteen days to pay in full, or it would go to a collection agency, so naturally I was unable to do anything about it and had to worry all weekend.
This morning I called the hospital, and they weren't really able to tell me what the payment was for. So after physical therapy (I got treated once more with electrodes to the butt...my superpowers are going to manifest this time for sure) today I called the insurance company. After being put on hold for several minutes, the lady's conclusion was that it looked like a filing error and she said she would call me back if she found out otherwise.
I hope the phone doesn't ring soon.
Labels: hip, hospital, insurance, physical therapy, superpowers
Wednesday, March 22, 2006
Appointments and CT scans and MRIs, Oh My!
This week I had the veritable motherlode of appointments. I had my usual blood draw/oncology team visit/infusion & pellet injection on Tuesday. I made sure to bring pictures of the wedding with me to show Lita, the Oncology nurse practitioner, who demanded them last time. (I also tossed in some of the wedding favors Brian's mom put together for her and Dr. Hayes.)
My mom picked me up, and they were running on time at the blood draw station, so I went in, had some tubes sucked out painlessly as possible (I love those people), and then came out to go to the next appointment. We went upstairs and waited for Brian. The check-in area was hectic, and there was about an hour to wait.
We did not get to go in early.
They called me to one of the rooms, and forty minutes later, Brian showed up. Finally, my mom decided she had to go, so she left and Brian and I waited some more. And we waited and waited. I chewed some gum. It lost its flavor, and still I waited. Finally Lita came in and checked how I was doing. I showed her the mini-album of pictures my mom put together and gave her the party favor. She was delighted with the candy, not having eaten lunch that day.
We talked about the nausea, and how that's really the only thing bothering me significantly at this point. We also talked about driving, and she suggested that physical therapy would be the place to address that issue, so I said I'd talk to Dr. Rodriguez (the physical medicine specialist) today about it. Then she took off to find Dr. Hayes and send him in.
We waited, and waited, and waited....
My gum lost its flavor, so I threw it away. I got cold and decided to put my shirt back on. I figured if the doctor wanted to use the stethescope, he didn't need me in a gown for that.
Finally he ducked in and asked if we'd seen Lita. Sure, uh, about an HOUR ago. He asked briefly how I was and then said he'd come back with her.
When they got back, and the doctor talked about how the "numbers are down" and that things are looking very good. He was talking about the presence of protein markers which indicate tumor activity: tumor activity is down, so I am getting healthier. He is a little bit concerned about the nausea, and ordered an MRI of the brain to rule out tumors there. "A hundred dollars on it being nothing," he said (or something like it.)
This makes me nervous. I have beaten stupider odds. But surely the universe would not do this to me again--that would just be cruel. They just have to rule it out. I hope they're ruling it out. "I'd stay and talk, but you're doing well and I need to go help the sick people," he said, and left.
So Lita suggested seeing if the MRI people I was going to see this morning could add another MRI.
I had to be at the hospital today at 5:30 a.m. Laugh uproariously, all ye who know how much of a morning person I am not.
They did add the other MRI, but it totally ruined my whole shtick about pretending to be a photon torpedo. They put stabilizer pads by my head and then affixed a thing that was more like The Man in the Iron Mask than Star Trek. It ruined my concentration and made me all tense. Then just as the test was beginning I suddenly realized I had totally forgotten to take my wedding band off. Was I wearing any metal? Duh....I thought for sure I had remembered everything. I could feel it buzzing to the MRI pulse and hoped that the machine wasn't going to explode or zap my ring finger off or anything like that.
The CT scan was over very quickly; it was just of the neck. The original CT and MRI scans were prescribed by Dr. Rodriguez, who wanted to investigate why I've been getting some numbness in my hands when my head turns a certain way. (I'm guessing "pinched nerve," but I'm not the doctor.) So after this morning, I had to go back to Ann Arbor in the afternoon to see her. She asked how I was, inquired about my movement, measuered my legs when I complained one feels shorter than the other, and wrote out a new prescription for physical therapy, suggested a driving evaluation when I asked about that, and told me that I can have an appointment with orthotist? Orthotician?
I have to get an orthotic wedge in my shoe. Sigh. At least this will help with the limping. I guess a wedge is better than having to get orthopedic shoes. My mom had to wear those when she was younger and the result was a woman with a full-blown shoe fetish that has yet to wane.
My mom picked me up, and they were running on time at the blood draw station, so I went in, had some tubes sucked out painlessly as possible (I love those people), and then came out to go to the next appointment. We went upstairs and waited for Brian. The check-in area was hectic, and there was about an hour to wait.
We did not get to go in early.
They called me to one of the rooms, and forty minutes later, Brian showed up. Finally, my mom decided she had to go, so she left and Brian and I waited some more. And we waited and waited. I chewed some gum. It lost its flavor, and still I waited. Finally Lita came in and checked how I was doing. I showed her the mini-album of pictures my mom put together and gave her the party favor. She was delighted with the candy, not having eaten lunch that day.
We talked about the nausea, and how that's really the only thing bothering me significantly at this point. We also talked about driving, and she suggested that physical therapy would be the place to address that issue, so I said I'd talk to Dr. Rodriguez (the physical medicine specialist) today about it. Then she took off to find Dr. Hayes and send him in.
We waited, and waited, and waited....
My gum lost its flavor, so I threw it away. I got cold and decided to put my shirt back on. I figured if the doctor wanted to use the stethescope, he didn't need me in a gown for that.
Finally he ducked in and asked if we'd seen Lita. Sure, uh, about an HOUR ago. He asked briefly how I was and then said he'd come back with her.
When they got back, and the doctor talked about how the "numbers are down" and that things are looking very good. He was talking about the presence of protein markers which indicate tumor activity: tumor activity is down, so I am getting healthier. He is a little bit concerned about the nausea, and ordered an MRI of the brain to rule out tumors there. "A hundred dollars on it being nothing," he said (or something like it.)
This makes me nervous. I have beaten stupider odds. But surely the universe would not do this to me again--that would just be cruel. They just have to rule it out. I hope they're ruling it out. "I'd stay and talk, but you're doing well and I need to go help the sick people," he said, and left.
So Lita suggested seeing if the MRI people I was going to see this morning could add another MRI.
I had to be at the hospital today at 5:30 a.m. Laugh uproariously, all ye who know how much of a morning person I am not.
They did add the other MRI, but it totally ruined my whole shtick about pretending to be a photon torpedo. They put stabilizer pads by my head and then affixed a thing that was more like The Man in the Iron Mask than Star Trek. It ruined my concentration and made me all tense. Then just as the test was beginning I suddenly realized I had totally forgotten to take my wedding band off. Was I wearing any metal? Duh....I thought for sure I had remembered everything. I could feel it buzzing to the MRI pulse and hoped that the machine wasn't going to explode or zap my ring finger off or anything like that.
The CT scan was over very quickly; it was just of the neck. The original CT and MRI scans were prescribed by Dr. Rodriguez, who wanted to investigate why I've been getting some numbness in my hands when my head turns a certain way. (I'm guessing "pinched nerve," but I'm not the doctor.) So after this morning, I had to go back to Ann Arbor in the afternoon to see her. She asked how I was, inquired about my movement, measuered my legs when I complained one feels shorter than the other, and wrote out a new prescription for physical therapy, suggested a driving evaluation when I asked about that, and told me that I can have an appointment with orthotist? Orthotician?
I have to get an orthotic wedge in my shoe. Sigh. At least this will help with the limping. I guess a wedge is better than having to get orthopedic shoes. My mom had to wear those when she was younger and the result was a woman with a full-blown shoe fetish that has yet to wane.
Labels: brain scan, Brian, CT scan, Dr. Hayes, Dr. Rodriguez, infusion, injection, Lita, mom, MRI, nausea, physical therapy, star trek, tumor marker, wedding
Thursday, February 23, 2006
Two days before the wedding
It's two days before my wedding, I'm still fighting nausea, and there's an awful lot of backstory to cover.
I discovered in the hospital that you can't depend on the caregivers to necessarily give the best care, whatever their intentions. It is vitally important to keep track of your own treatment and to speak up if something doesn't seem right.
Unfortunately, many of the things that don't seem right are just a natural result of being ill or damaged. I started suffering ungodly muscle spasms, particularly at night. You know how when you fall asleep, sometimes your body does that all-over jerk that feels like you've just fallen from mid-air? Or sometimes it feels like electricity, or like all of your muscles just have to tighten all at once. It's involuntary, and usually harmless, but with my hip fracture, it was unbearably painful.
I also had a huge amount of nausea, which seemed to be made worse by anxiety. Every time the attending doctor and his little doctorlets came by, I felt ill. When my mom wanted to talk about wedding invitations--what kind of print, wording, whether to say "the parents of" or have them be from Brian and me--I felt queasy. When anybody talked about possible discharge from the hospital, I became ill. Where was I going to go? I couldn't imagine going back to the second-story apartment in Westland. But what else could I do? Brian began searching for other apartments, and looking at options also made me feel queasy.
At this point, I began physical therapy. I was on some level glad to be getting out of that torturous hospital device they call a "bed" and beginning the process of becoming something that wasn't an immobile lump of protoplasm, although actually having to do it was painful, difficult, tiring, and also caused nausea. Sitting up for long was difficult at first, but at least I did know--from previous experience--that it would pass and that getting up and moving around would ultimately be good for me. The physical therapist would show up, bring a walker, and have me try to get out of bed and move around. First it was three feet away from the bed and back. Then it was to the door and back. Then it was through the door, across the hall and back. Each time my jaunts got successively longer, and she recommended--as an alternative to going home or going into an "assistive care facility" (read: "nursing home")--that I be admitted to the intensive rehabilitation unit on the same floor of the hospital. I would do physical and occupational therapy twice a day.
So I moved to the room where I would spend my Christmas.
On my first day of occupational therapy, I was measured for compression stockings and given a set of adaptive equipment of the kind they gave to Grandma when she had her hip injury several years ago. I too got the sock put-er on-er, the grippy thing, the giant shoe horn, the pants hook. I'm not sure if Grandma also got the leg loop (it looks like one of those "invisible dog" leashes) or not; I found mine to be incredibly helpful for moving my legs onto and off of the bed.
Physical therapy consisted of walking for longer and longer distances using the walker (but putting no weight on the right foot), doing leg exercises on the mat, and occasionally doing arm strengthening using the pulleys or fulcrum weights. They also taught skills like stepping up onto a curb using a walker, sitting down in a car seat from either a wheelchair or a walker, and using a crutch to go up and down stairs.
I had too much anxiety to do the stairs. I was just too worried about my hips crumpling like phyllo pastry, and the therapists didn't press me.
Occupational therapy consisted of getting me dressed and showered in the mornings, and in the afternoon doing a combination of eye-hand coordination activities, some arm strengthening activities, and some arts and crafts. I saw people making these rubber mats with the Michigan M and when offered the tubs of colored rubber tiles, decided I would try to get creative and make an aquatic scene. The therapist was getting visibly impatient with me (she wanted to clear space off the counter) and I couldn't spend as much time planning my picture as I wanted, so I had to do a fairly rudimentary scene with two fish, gravel, some plants, and two different colors of blue to indicate the depth of the water.
Nobody told me it was going to be a doormat. If I'd known, as I told one of the substitute therapists on the Christmas break, I would have planned the picture to be horizontally aligned...as it was, they must have thought I was either mentally deranged or just really careless.
The other therapist turned it sideways the way I had planned it. "Oh hey, that's actually pretty cute!"
I discovered in the hospital that you can't depend on the caregivers to necessarily give the best care, whatever their intentions. It is vitally important to keep track of your own treatment and to speak up if something doesn't seem right.
Unfortunately, many of the things that don't seem right are just a natural result of being ill or damaged. I started suffering ungodly muscle spasms, particularly at night. You know how when you fall asleep, sometimes your body does that all-over jerk that feels like you've just fallen from mid-air? Or sometimes it feels like electricity, or like all of your muscles just have to tighten all at once. It's involuntary, and usually harmless, but with my hip fracture, it was unbearably painful.
I also had a huge amount of nausea, which seemed to be made worse by anxiety. Every time the attending doctor and his little doctorlets came by, I felt ill. When my mom wanted to talk about wedding invitations--what kind of print, wording, whether to say "the parents of" or have them be from Brian and me--I felt queasy. When anybody talked about possible discharge from the hospital, I became ill. Where was I going to go? I couldn't imagine going back to the second-story apartment in Westland. But what else could I do? Brian began searching for other apartments, and looking at options also made me feel queasy.
At this point, I began physical therapy. I was on some level glad to be getting out of that torturous hospital device they call a "bed" and beginning the process of becoming something that wasn't an immobile lump of protoplasm, although actually having to do it was painful, difficult, tiring, and also caused nausea. Sitting up for long was difficult at first, but at least I did know--from previous experience--that it would pass and that getting up and moving around would ultimately be good for me. The physical therapist would show up, bring a walker, and have me try to get out of bed and move around. First it was three feet away from the bed and back. Then it was to the door and back. Then it was through the door, across the hall and back. Each time my jaunts got successively longer, and she recommended--as an alternative to going home or going into an "assistive care facility" (read: "nursing home")--that I be admitted to the intensive rehabilitation unit on the same floor of the hospital. I would do physical and occupational therapy twice a day.
So I moved to the room where I would spend my Christmas.
On my first day of occupational therapy, I was measured for compression stockings and given a set of adaptive equipment of the kind they gave to Grandma when she had her hip injury several years ago. I too got the sock put-er on-er, the grippy thing, the giant shoe horn, the pants hook. I'm not sure if Grandma also got the leg loop (it looks like one of those "invisible dog" leashes) or not; I found mine to be incredibly helpful for moving my legs onto and off of the bed.
Physical therapy consisted of walking for longer and longer distances using the walker (but putting no weight on the right foot), doing leg exercises on the mat, and occasionally doing arm strengthening using the pulleys or fulcrum weights. They also taught skills like stepping up onto a curb using a walker, sitting down in a car seat from either a wheelchair or a walker, and using a crutch to go up and down stairs.
I had too much anxiety to do the stairs. I was just too worried about my hips crumpling like phyllo pastry, and the therapists didn't press me.
Occupational therapy consisted of getting me dressed and showered in the mornings, and in the afternoon doing a combination of eye-hand coordination activities, some arm strengthening activities, and some arts and crafts. I saw people making these rubber mats with the Michigan M and when offered the tubs of colored rubber tiles, decided I would try to get creative and make an aquatic scene. The therapist was getting visibly impatient with me (she wanted to clear space off the counter) and I couldn't spend as much time planning my picture as I wanted, so I had to do a fairly rudimentary scene with two fish, gravel, some plants, and two different colors of blue to indicate the depth of the water.
Nobody told me it was going to be a doormat. If I'd known, as I told one of the substitute therapists on the Christmas break, I would have planned the picture to be horizontally aligned...as it was, they must have thought I was either mentally deranged or just really careless.
The other therapist turned it sideways the way I had planned it. "Oh hey, that's actually pretty cute!"
Labels: anxiety, Brian, doctorlets, Grandma, hip, hospital, mom, nausea, physical therapy, spasms, stairs, walker, wedding, wheelchair
Thursday, November 17, 2005
Things I have in Common with Grandma
I'm about the same height. We both wear size seven shoes. We both take lots of medications. Both of us are currently having some trouble getting around, and neither of us is going to be completing our Olympic floor exercise routine any time soon. I think I inherited Grandma's forehead. We both really dislike physical therapy. I collect dolls like Grandma does. And I fully confess I got the idea of decorating my Christmas tree in white and gold from Grandma, who did it first.
I have a broken hip, now, too.
My fall the other day put a fracture in one of the weakened areas of my pelvis. I called my pain management/physical medicine doctor (Dr. Nadjarian) this morning, who stopped short of calling me an idiot and insisted I come in for ex-rays at the emergency center that's downstairs from his office. He told me to call a cab.
I was leery, but the cab dude turned out to be very nice. He helped me to the car and turned out to be a huge proponent of librarians. In fact, he used to have a job selling books to librarians. "Those librarians can be crazy to hang out with," he said. "They get pretty wild." I commented that I think librarians tend to feel compelled to rebel against the stereotype.
"It's true," he agreed, then went on an impassioned diatribe about how libraries are not sanctified spaces of higher learning any more and he gets so angry when he sees "these kids today" yakking on their cell phones at the library. I hear ya, mister.
After a brief and confused trip upstairs, I was made to understand that I should check in at the emergency desk downstairs to be evaluated by the ER doctor. At this point Brian surprised me by showing up at the medical center; when he got my message he told work he was leaving to go to the hospital...I'm not too sure that is going to bode well for his job, but I was glad he was there with me. The ER doctor moved my leg in various directions and observed my grimace of pain and sharp intake of breath in a very clinical fashion. Then they sent me for ex-rays. (The radiology people commented they could still see the barium in my system from the CT scans.)
There probably isn't much that can be done surgically to address the fracture; it's not the kind of injury that pins or false joints can repair. Unlike Grandma, I do not need a hip replacement. They gave me crutches to walk with, advised me to keep my weight off of it, and Dr. Nadjarian said he would call UM and try to set something up with an orthopedic specialist there since I'm going to be transferring my oncology to UM anyway.
It looks like I will be spending some more time at home for a while. I just got cable and will be able to watch Trading Spaces just like I get to do at Grandma's house.
I have a broken hip, now, too.
My fall the other day put a fracture in one of the weakened areas of my pelvis. I called my pain management/physical medicine doctor (Dr. Nadjarian) this morning, who stopped short of calling me an idiot and insisted I come in for ex-rays at the emergency center that's downstairs from his office. He told me to call a cab.
I was leery, but the cab dude turned out to be very nice. He helped me to the car and turned out to be a huge proponent of librarians. In fact, he used to have a job selling books to librarians. "Those librarians can be crazy to hang out with," he said. "They get pretty wild." I commented that I think librarians tend to feel compelled to rebel against the stereotype.
"It's true," he agreed, then went on an impassioned diatribe about how libraries are not sanctified spaces of higher learning any more and he gets so angry when he sees "these kids today" yakking on their cell phones at the library. I hear ya, mister.
After a brief and confused trip upstairs, I was made to understand that I should check in at the emergency desk downstairs to be evaluated by the ER doctor. At this point Brian surprised me by showing up at the medical center; when he got my message he told work he was leaving to go to the hospital...I'm not too sure that is going to bode well for his job, but I was glad he was there with me. The ER doctor moved my leg in various directions and observed my grimace of pain and sharp intake of breath in a very clinical fashion. Then they sent me for ex-rays. (The radiology people commented they could still see the barium in my system from the CT scans.)
There probably isn't much that can be done surgically to address the fracture; it's not the kind of injury that pins or false joints can repair. Unlike Grandma, I do not need a hip replacement. They gave me crutches to walk with, advised me to keep my weight off of it, and Dr. Nadjarian said he would call UM and try to set something up with an orthopedic specialist there since I'm going to be transferring my oncology to UM anyway.
It looks like I will be spending some more time at home for a while. I just got cable and will be able to watch Trading Spaces just like I get to do at Grandma's house.
Labels: barium, Brian, Dr. Nadjarian, fracture, Grandma, hip, physical therapy, University of Michigan Cancer Center, x-rays
