Tuesday, July 22, 2008
I Has a Sad
Today I found out that a former boss (well, technically my boss's boss) passed away last Thursday. Dr. Hackney was the head of the Counseling department at Macomb Community College. I worked there in the summers while I was home from college. After a stint at the Learning Center, I went back to Counseling, where my job was to help new students get started, and help associate degree students figure out what classes they needed.
The Macomb Assistance Center was often a very fun place to be. Once I was helping a student on the phone when I looked up and noticed something odd...
"First you fill out the application, then you will need to take the--OH MY GOD!" My fellow Assistance Center technicians Robyn and Lori had glued tiny photocopies of David Duchovny's head to all of the push pins on my bulletin board.
Computing services on campus was not always concerned about securing desktop PCs, so at the prompting of Dr. Hackney's secretary, I installed a piece of software on his machine that replaced the regular system beeps and sounds with video and audio clips from Star Wars. The next time he came in, his computer greeted him with "Help me, Obi Wan Kenobi; you're my only hope."
Dr. Hackney was very proud of his Tickle-Me Elmo.
He was very kind and low key. He was the only African-American administrator on campus (at that time at any rate...I don't know what the situation is now), which I imagine was somewhat difficult. I respected him immensely.
I left in 1999, and Dr. Hackney retired in 2002. I hadn't seen him in years, then Brian and I ran into him at the radiation oncology department at the hospital this past February. He recognized me first and said hi. We talked a little bit, introduced spouses, and then lapsed into silence, because what do you really say when you're waiting to be bombarded with radiation for cancer?
Last Thursday I wasn't feeling all that well, but I met Robyn and Lori for dinner. I mentioned having seen Dr. Hackney at the hospital a few months ago, and we reminisced about him and about our days together in the same office.
That's the night he passed away. I can only offer my deepest condolences and sympathy to his family and loved ones.
Larry Heywood Hackney, Ph.D
1938-2008
Labels: Brian, Dr. Larry Hackney, liver, radiation
Tuesday, March 25, 2008
Yay! Hospital Food!
I went to the clinic on Friday and got to speak with the nurse practitioner who is Lita's counterpart. I believe she tried to give me good information and assistance, but I don't think I will consent to speak with her again unless Lita has been hit by that mythical bus that's just aiming to kill everyone. I felt things were going fine until she asked me if I had ever had a conversation about ceasing treatment.
Huh? Why the would I be calling asking about my symptoms and trying like heck to get back on chemo if that were the case? Why would THIS be the time to be having such a discussion? I was very upset and later, extremely angry that she would say such a thing to me. She doesn't KNOW me. Perhaps she was attempting in some clumsy way to bring up the notion of advance directives, but I've already gone through that with other people and it's not her business. I don't know to whom I can complain about this, or maybe I should just let it go.
Anyway, after an early morning MRI on Saturday, I got a call from one of the doctors I saw initially about the brain mets that I should go back to the hospital immediately. I was able to go to the floor instead of being admitted to the ER, which streamlined things somewhat, but it did mean having to be in the hospital over night for who knows how long. The plan was to radiate my thoracic spine--the MRI showed that one of the two lesions on my spine had increased in size, and the one in the T9 area is poking into my spinal column, which may account for some of my recent symptoms (but not the shingles). This is seen as an immediate problem, since delaying action can result in, oh, say, paralysis.
Sigh.
I got a private room, which was kind of nice. I also had multiple radiation/neuro people come to my room to have me squeeze their hands, follow the light with my eyes, and have invasive procedures to test the muscle tone of an area one doesn't want to have evaluated multiple times unless one has that particular fetish.
I refused the third "evaluation."
Sleeping was also a problem as they have seen fit to up my decadron to 8mg a day. I finally saw the movie Brigadoon (I have a soft spot for Gene Kelly) and a number of shows on Animal Planet about some amazing dogs that have vastly improved the lives of their owners, including one lab puppy who kept running away from home to be with a lady who eventually had her breast cancer diagnosed after the dog became upset and was poking at her breast incessantly. Dogs have been trained to detect cancer cells by smell, but this dog just did it naturally.
I did get released on Easter; I was expecting to go to my mom's for dinner, but that just wasn't going to work out. Instead, after she arrived at the hospital only to find out that I had just been discharged, we all went back to Canton and Brian's parents showed up shortly afterwards.
I've had three radiation treatments so far; they've scheduled them all at 7am, which is hilarious. This time I don't have to wear a mask; they just have me up on the table. I will have ten treatments altogether, and it will be over April 2. I don't know how long I will have to recover from the radiation before they can resume the chemo. I really hope there are no more hurdles. My other things have to heal and we are all hoping I don't get some kind of inconvenient infection.
Huh? Why the
Anyway, after an early morning MRI on Saturday, I got a call from one of the doctors I saw initially about the brain mets that I should go back to the hospital immediately. I was able to go to the floor instead of being admitted to the ER, which streamlined things somewhat, but it did mean having to be in the hospital over night for who knows how long. The plan was to radiate my thoracic spine--the MRI showed that one of the two lesions on my spine had increased in size, and the one in the T9 area is poking into my spinal column, which may account for some of my recent symptoms (but not the shingles). This is seen as an immediate problem, since delaying action can result in, oh, say, paralysis.
Sigh.
I got a private room, which was kind of nice. I also had multiple radiation/neuro people come to my room to have me squeeze their hands, follow the light with my eyes, and have invasive procedures to test the muscle tone of an area one doesn't want to have evaluated multiple times unless one has that particular fetish.
I refused the third "evaluation."
Sleeping was also a problem as they have seen fit to up my decadron to 8mg a day. I finally saw the movie Brigadoon (I have a soft spot for Gene Kelly) and a number of shows on Animal Planet about some amazing dogs that have vastly improved the lives of their owners, including one lab puppy who kept running away from home to be with a lady who eventually had her breast cancer diagnosed after the dog became upset and was poking at her breast incessantly. Dogs have been trained to detect cancer cells by smell, but this dog just did it naturally.
I did get released on Easter; I was expecting to go to my mom's for dinner, but that just wasn't going to work out. Instead, after she arrived at the hospital only to find out that I had just been discharged, we all went back to Canton and Brian's parents showed up shortly afterwards.
I've had three radiation treatments so far; they've scheduled them all at 7am, which is hilarious. This time I don't have to wear a mask; they just have me up on the table. I will have ten treatments altogether, and it will be over April 2. I don't know how long I will have to recover from the radiation before they can resume the chemo. I really hope there are no more hurdles. My other things have to heal and we are all hoping I don't get some kind of inconvenient infection.
Labels: Brian, Decadron, hospital, Joyce, Lita, mom, MRI, radiation, Roger, shingles, spine
Thursday, February 14, 2008
Because Brain Mets Just Aren't Enough:
Shingles, which has me crabby.
Talk about insult to injury--I've been almost unreasonably optimistic and chipper since regaining my ability to communicate. I started noticing a couple of blisterlike red spots on my neck a few days ago and thought perhaps it was a reaction to the radiation. They were uncomfortable, so I put lotion on them. Today they had doubled in number. They are irritated when anything touches them, they itch, and moving my head makes the skin stretch and become more uncomfortable.
This morning I was told three times that lotion can intensify the beams and make it worse, so it was really my fault.
The techs went to get the nurse, who went to get Dr. Hayman, who decided it might be shingles and went to get a physician's assistant, who concurred but went to call the department of dermatology to have me see them today.
The doctorlet at the department of dermatology decided it was shingles, but went to get one of the supervising doctors, who agreed completely. They then asked me if it would be ok for the medical students to come and look. I said "ok," not realizing there would be about ten of them, a few of whom wanted to poke and prod. (I hope they've already had chicken-pox.) Then I had one of the blisters scraped, and under a microscope they detected a viral load, so I now get to take--in addition to the stuff I was given for the brain thing--the most enormous dark blue pills I have ever seen in my life. Dermatology is doing follow-up tests, as well.
At least Dr. Hayman told me it wasn't related to the radiation per se (I wonder if the steroid is suppressing my immune system) since it is directed at my brain and not at my neck/chest area. What, am I under stress or something?
The good news about today is that Brian and I went to Zingerman's in Ann Arbor for some really excellent sandwiches and baked goods. I now know where to get gelato, too. Their foods all rock, and you might want to check them out. We also managed to get out of a ticket possibly by having a hospital Radiation Oncology tag hanging from the rear-view mirror.
Labels: brain metastases, Brian, Decadron, dermatologist, doctorlets, Dr. Hayman, radiation, shingles, whole-brain radiation
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
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
Saturday, February 04, 2006
Admission: aren't hospitals supposed to make you feel better?
Brian contacted Lita to let her know what was going on and that getting to my radiation appointments was going to be a problem. She wanted to get me admitted to the care of radiation oncology, but to do that I'd need to come through the Emergency Room at U of M since the prospect of doing any normal kind of transportation was out of the question.
The trouble with my Westland apartment is that Westland is smack dab in the middle of Oakwood hospital territory. Local ambulances were going to want to take me somewhere nearby. EMS people who normally deliver to U of M are not going to want to travel all the way to Westland to pick somebody up. After no small amount of calling different EMS companies, Brian found one that was willing to go out of the way.
The EMS people came and discussed how to get me out of the apartment, and ended up getting help from the local fire department. The trick was going to be moving me over onto the body board, which didn't quite fit around the corner from the bedroom to the hallway, so they were going to have to tilt it sideways. (They did a draft run before loading me up.) The other problem was that I was completely unable to scootch myself over from the bed to the board, so they were going to have to manhandle me over. There was some discussion about whether or not to just take the sheets, which caused me to panic unreasonably since I love those sheets, which have a very high thread count. Finally I think they got a sheet of their own and jiggled me on one side then the other (not pleasant), and then moved me on the heave of three, which was awful, I saw stars, and whimpered from the agony.
Agony. It's a word I will probably use a lot. I think it might come across as hyperbole, but I do not exaggerate.
Being tilted sideways was not only painful, but it was frightening as well. I was strapped down fairly well, but couldn't help worrying that I would fall off the board. The EMS people tried fairly hard to keep me level on the stairs, which I appreciated, and when we got outside they were able to move me to a stretcher. It was snowing, and I thought of the poem recited by Joy Gresham in Shadowlands where she talks about soldiers seeing "..with unwounded eye/For once a gentle thing/Fall from the sky."
In the emergency van they hooked me up, loaded me with drugs to keep me from feeling too much during the trip, and took me to Ann Arbor.
I think I was probably in the Emergency area for a long time, but I don't really know. What I remember most is having to go to be X-rayed, where I felt that the technicians wanted to cause me unreasonable pain. In order to get good films of my hip, they tried to do a "through-shot" which involved lifting one leg and trying to take the X-ray under the leg. Brian had to help hold the leg up, since I just couldn't do it. Then they decided that wasn't good enough and insisted I be turned on my side. I insisted they not do it, but I lost out. When they turned me, I actually screamed. I decided X-rays were bad, tests were bad, and I didn't want to ever have any more. Moving to and from the X-ray table and the transport gurney were also bad. It seems to be impossible for four to six people to keep legs and hips and shoulders and everything else lined up while moving a body. To somebody with a broken pelvis, this means that being moved is going to cause hideous pain.
After deciding, "yup, she has a broken pelvis" and "yup, she can't get around without severe assistance" and "yup, her vitals are a bit screwey and need to be watched," I was admitted to the hospital proper. At this point, more tests were warranted since I had abdominal tenderness, and the doctors were concerned I might be in the midst of some kind of spleen/gallbladder issue, so they wanted to send me down for an ultrasound, at which point I began to cry, which hurt my hip.
The nurse was livid, and told me I didn't have to go if I didn't want to. She told the doctors so.
I don't have to go? Cool! So I refused to let them transport me--which I had already decided was evil and unbearably painful, what with being tossed around like a sack of potatoes--for something I wasn't convinced I had.
So the doctors came to me and said the test was vitally important, and they had a portable scanner they could use.
If they had a portable scanner, why couldn't they propose using that on someone who finds moving to be insupportibly agonizing? Grrrrr... Incidentally, when they did bring the portable scanner (which the technicians complained about no end--apparently it doesn't do everything automatically like their shiny new stationary equipment down in the ultrasound area; poor babies), they had another stop on my floor anyway.
Having the test required no food or drink, which led to my next lesson in Life in the Hospital: shift changes can result in some incredible stupidity.
To be continued...
The trouble with my Westland apartment is that Westland is smack dab in the middle of Oakwood hospital territory. Local ambulances were going to want to take me somewhere nearby. EMS people who normally deliver to U of M are not going to want to travel all the way to Westland to pick somebody up. After no small amount of calling different EMS companies, Brian found one that was willing to go out of the way.
The EMS people came and discussed how to get me out of the apartment, and ended up getting help from the local fire department. The trick was going to be moving me over onto the body board, which didn't quite fit around the corner from the bedroom to the hallway, so they were going to have to tilt it sideways. (They did a draft run before loading me up.) The other problem was that I was completely unable to scootch myself over from the bed to the board, so they were going to have to manhandle me over. There was some discussion about whether or not to just take the sheets, which caused me to panic unreasonably since I love those sheets, which have a very high thread count. Finally I think they got a sheet of their own and jiggled me on one side then the other (not pleasant), and then moved me on the heave of three, which was awful, I saw stars, and whimpered from the agony.
Agony. It's a word I will probably use a lot. I think it might come across as hyperbole, but I do not exaggerate.
Being tilted sideways was not only painful, but it was frightening as well. I was strapped down fairly well, but couldn't help worrying that I would fall off the board. The EMS people tried fairly hard to keep me level on the stairs, which I appreciated, and when we got outside they were able to move me to a stretcher. It was snowing, and I thought of the poem recited by Joy Gresham in Shadowlands where she talks about soldiers seeing "..with unwounded eye/For once a gentle thing/Fall from the sky."
In the emergency van they hooked me up, loaded me with drugs to keep me from feeling too much during the trip, and took me to Ann Arbor.
I think I was probably in the Emergency area for a long time, but I don't really know. What I remember most is having to go to be X-rayed, where I felt that the technicians wanted to cause me unreasonable pain. In order to get good films of my hip, they tried to do a "through-shot" which involved lifting one leg and trying to take the X-ray under the leg. Brian had to help hold the leg up, since I just couldn't do it. Then they decided that wasn't good enough and insisted I be turned on my side. I insisted they not do it, but I lost out. When they turned me, I actually screamed. I decided X-rays were bad, tests were bad, and I didn't want to ever have any more. Moving to and from the X-ray table and the transport gurney were also bad. It seems to be impossible for four to six people to keep legs and hips and shoulders and everything else lined up while moving a body. To somebody with a broken pelvis, this means that being moved is going to cause hideous pain.
After deciding, "yup, she has a broken pelvis" and "yup, she can't get around without severe assistance" and "yup, her vitals are a bit screwey and need to be watched," I was admitted to the hospital proper. At this point, more tests were warranted since I had abdominal tenderness, and the doctors were concerned I might be in the midst of some kind of spleen/gallbladder issue, so they wanted to send me down for an ultrasound, at which point I began to cry, which hurt my hip.
The nurse was livid, and told me I didn't have to go if I didn't want to. She told the doctors so.
I don't have to go? Cool! So I refused to let them transport me--which I had already decided was evil and unbearably painful, what with being tossed around like a sack of potatoes--for something I wasn't convinced I had.
So the doctors came to me and said the test was vitally important, and they had a portable scanner they could use.
If they had a portable scanner, why couldn't they propose using that on someone who finds moving to be insupportibly agonizing? Grrrrr... Incidentally, when they did bring the portable scanner (which the technicians complained about no end--apparently it doesn't do everything automatically like their shiny new stationary equipment down in the ultrasound area; poor babies), they had another stop on my floor anyway.
Having the test required no food or drink, which led to my next lesson in Life in the Hospital: shift changes can result in some incredible stupidity.
To be continued...
Labels: Brian, EMS, hip, hospital, Lita, radiation, ultrasound, Westland, x-rays
Thursday, February 02, 2006
Phew; where to begin?
So much has happened in the time since my last post. I regret not having been able to chronicle things as they occurred. At this point I think most of the three or so people who read this blog are up to date, but I will try to reconstruct events (to the best of my ability) after the fact.
After my less-than-delightful news about the cause of my joint pain (which just had to be delivered by the incredibly condescending doctor whom I have since given several bad ratings in a mail survey sent to me by Oakwood Westland Family Practice), I intended to soldier on and go about my business. I contacted the University of Michigan Cancer Center, and was told that I would have to supply them with all of the conceivable medical records relating to my initial cancer diagnosis. Slides, mammograms, X-rays, scans, pathology reports, everything.
I was unable to do much of anything besides make phone calls; Brian did most of the collecting. He went to various hospitals and gathered piles of films and scans and CDs. He tried looking at them too, but to a lay person they don't make much sense. The Cancer Center called and said I had an appointment with Dr. Daniel Hayes on November 29. I met the doctor and Lita, his nurse practitioner who both seemed very kind and yet somewhat disquieting. Nobody asked the really dangerous questions, and nobody seemed inclined to provide answers to what remained unasked: how bad is it? How long do I have? What's the prognosis? Will I get better?
What they did do is start setting up appointments like gangbusters. I was to come back the next day to meet with the orthopedic surgeon to find out if surgery would be required for my hip. I was to have the first of my monthly infusions of a bone-strengthening drug and the first injection of the pellet which has by now completely shut down my ovaries (there will not be the pitter-patter of little feet in my future unless the little feet are attached to a puppy), and I was to meet with the radiation oncologist to get "measured" for the radiation treatments.
The next day I was back at the medical center being wheeled around. Good news from the surgeon: no surgery. It wouldn't really help at this point, and radiation would be of more benefit. The infusion was unpleasant, as they always are; the iv lady couldn't get the iv started and after several failed attempts had to get somebody else to do it. The giant needle used to insert the pellet hurt like a m***** f*****. When they say "You might feel a little sting," be prepared for the PAIN.
Finally I went to meet the radiation oncologist, who was oddly smiley, and the radiation people put me on the table, made some marks on my body, and then said something which sounded disturbingly like, "Ok, now we're going to do the tattoos."
"Is that really necessary?" I said. I'd had it with being stabbed for one day.
It wasn't. They were able to make do with stickers, so I avoided acquiring permanent markings as a sign of my treatment. (I did eventually get something of a radiation burn on some very private areas--and suffered some rather interesting hair loss--but the rash went away and I assume the hair will eventually grow back. If not, I'll forever be able to save money on the kind of bikini wax job people pay good money for.)
Sitting up from the table, I started to feel very ill...I am extremely familiar with nausea and started having that extreme saliva production that heralds the onset of, well, the puking. Somebody grabbed a pink tray for me, and I spewed into that for a moment. Of course the involuntary spasms caused no small amount of agony in my hip.
Later that evening, getting into the car, I had trouble turning on my good foot and accidentally put my full weight on the injured side.
Agony.
Every bump in the road compounded it.
Getting out of the car took forever.
Getting up the steps was one of the hardest and most painful things I've ever done; putting any weight at all on my right leg caused horrible, excruciating pain. Dangling the leg and putting no weight on it caused similar, but different pain. Every time I was able to hoist myself onto the next step, my right foot would tap the step as well, causing more agony. About halfway up the staircase I started to feel like my left hip was snapping apart as well. I don't know how I finally made it; Brian tried to help but lifting under my arms didn't work either. I eventually made it onto the landing and it took about a half an hour to go from the front door to the bathroom. From there I went to bed, where I planned to stay the next day.
Before leaving for work the next morning, Brian made sure I would have pills and water nearby, and that I'd have access to a phone. When I woke up and attempted to get out of bed, I was made painfully aware that I was not going to be able to do so. I couldn't get out of bed, much less cross the hall to go to the bathroom or make it down the stairs to any of my radiation appointments. I called Brian and left a message; Brian called Lita and started planning how to get me admitted to UM Hospital's Emergency Room.
To be continued...
After my less-than-delightful news about the cause of my joint pain (which just had to be delivered by the incredibly condescending doctor whom I have since given several bad ratings in a mail survey sent to me by Oakwood Westland Family Practice), I intended to soldier on and go about my business. I contacted the University of Michigan Cancer Center, and was told that I would have to supply them with all of the conceivable medical records relating to my initial cancer diagnosis. Slides, mammograms, X-rays, scans, pathology reports, everything.
I was unable to do much of anything besides make phone calls; Brian did most of the collecting. He went to various hospitals and gathered piles of films and scans and CDs. He tried looking at them too, but to a lay person they don't make much sense. The Cancer Center called and said I had an appointment with Dr. Daniel Hayes on November 29. I met the doctor and Lita, his nurse practitioner who both seemed very kind and yet somewhat disquieting. Nobody asked the really dangerous questions, and nobody seemed inclined to provide answers to what remained unasked: how bad is it? How long do I have? What's the prognosis? Will I get better?
What they did do is start setting up appointments like gangbusters. I was to come back the next day to meet with the orthopedic surgeon to find out if surgery would be required for my hip. I was to have the first of my monthly infusions of a bone-strengthening drug and the first injection of the pellet which has by now completely shut down my ovaries (there will not be the pitter-patter of little feet in my future unless the little feet are attached to a puppy), and I was to meet with the radiation oncologist to get "measured" for the radiation treatments.
The next day I was back at the medical center being wheeled around. Good news from the surgeon: no surgery. It wouldn't really help at this point, and radiation would be of more benefit. The infusion was unpleasant, as they always are; the iv lady couldn't get the iv started and after several failed attempts had to get somebody else to do it. The giant needle used to insert the pellet hurt like a m***** f*****. When they say "You might feel a little sting," be prepared for the PAIN.
Finally I went to meet the radiation oncologist, who was oddly smiley, and the radiation people put me on the table, made some marks on my body, and then said something which sounded disturbingly like, "Ok, now we're going to do the tattoos."
"Is that really necessary?" I said. I'd had it with being stabbed for one day.
It wasn't. They were able to make do with stickers, so I avoided acquiring permanent markings as a sign of my treatment. (I did eventually get something of a radiation burn on some very private areas--and suffered some rather interesting hair loss--but the rash went away and I assume the hair will eventually grow back. If not, I'll forever be able to save money on the kind of bikini wax job people pay good money for.)
Sitting up from the table, I started to feel very ill...I am extremely familiar with nausea and started having that extreme saliva production that heralds the onset of, well, the puking. Somebody grabbed a pink tray for me, and I spewed into that for a moment. Of course the involuntary spasms caused no small amount of agony in my hip.
Later that evening, getting into the car, I had trouble turning on my good foot and accidentally put my full weight on the injured side.
Agony.
Every bump in the road compounded it.
Getting out of the car took forever.
Getting up the steps was one of the hardest and most painful things I've ever done; putting any weight at all on my right leg caused horrible, excruciating pain. Dangling the leg and putting no weight on it caused similar, but different pain. Every time I was able to hoist myself onto the next step, my right foot would tap the step as well, causing more agony. About halfway up the staircase I started to feel like my left hip was snapping apart as well. I don't know how I finally made it; Brian tried to help but lifting under my arms didn't work either. I eventually made it onto the landing and it took about a half an hour to go from the front door to the bathroom. From there I went to bed, where I planned to stay the next day.
Before leaving for work the next morning, Brian made sure I would have pills and water nearby, and that I'd have access to a phone. When I woke up and attempted to get out of bed, I was made painfully aware that I was not going to be able to do so. I couldn't get out of bed, much less cross the hall to go to the bathroom or make it down the stairs to any of my radiation appointments. I called Brian and left a message; Brian called Lita and started planning how to get me admitted to UM Hospital's Emergency Room.
To be continued...
Labels: blog, Brian, Dr. Hayes, hip, infusion, IV, Lita, nausea, Oakwood, radiation, spasms, University of Michigan Cancer Center, Zometa
