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
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
Wednesday, November 16, 2005
University of Michigan Hospital just called
And it wasn't just to say they loved me.
I have an appointment November 29 at 4:00 p.m., to which I am supposed to hand-carry all of the films associated with my various mammograms, scans, ex-rays, and what not. I'm not entirely sure how to go about getting all of them, since I'm not sure the doctors who prescribed those tests necessarily get the actual films. Sigh.
I have an appointment November 29 at 4:00 p.m., to which I am supposed to hand-carry all of the films associated with my various mammograms, scans, ex-rays, and what not. I'm not entirely sure how to go about getting all of them, since I'm not sure the doctors who prescribed those tests necessarily get the actual films. Sigh.
Labels: bone scan, mammogram, University of Michigan Cancer Center, x-rays
Friday, November 11, 2005
Officially Differently-Abled
I went to see Dr. Coello today with my mom, who insisted his hands weren't as cold as I claimed they were, however she didn't have them prodding her lymph nodes. I had told him over the phone that I was interested in seeking care from the University of Michigan Health System, and he agreed it would be a good idea, particularly since research institutions like U of M or Wayne State can offer treatments that regular oncologists don't.
He said a good option for me might be a bone marrow transplant. Chemotherapy works by destroying fast-growing cells, since cancer cells are among those that grow the fastest. However, so do cells in the hair follicles, stomach lining, and bone marrow. If the treatment is too severe, it can kill off a patient's bone marrow, which is generally not a good thing, since it is needed to produce new blood cells. So what they can do is harvest the patient's bone marrow, do a more powerful chemo treatment than they'd be able to do otherwise, and then reinject the harvested marrow after the chemo has been completed.
He said I would be a good candidate for this procedure (since I'm young and generally healthy, except for, you know, having cancer) and he would contact the U of M Cancer Center immediately to send them his records and impress upon them how things need to move quickly. I hope to be able to see someone next week. Wherever I go, Dr. Coello said that chemo treatments would most likely relieve my pain in as little as 2 to 3 weeks. I am very much looking forward to that, although in the meantime I did ask for a form to get a handicapped sticker from the Secretary of State's office, and my library director and associate director arranged a handicapped permit for my car that will allow me to park by the library loading dock. I'm officially differently-abled! I'm handicapable!
I will be slightly embarrassed to tell the oncologist assigned to me by my new primary care office that I will actually be heading elsewhere, but if he's professional, he won't mind my seeking care that I'm comfortable with.
What I wonder is, what do they do with the bone marrow once they've sucked it out and before they squirt it back it? Is it kept in jiggling piles on petri dishes? Do they load it into tubes to be extruded back into place? Do they use little tiny turkey basters to suck it up, freeze it, then let it thaw and squeeze it back in? Do they ever get the samples mixed up and could I end up with the bone marrow of an NBA draft pick? Will it improve my game? Medical science contains so many mysteries.
He said a good option for me might be a bone marrow transplant. Chemotherapy works by destroying fast-growing cells, since cancer cells are among those that grow the fastest. However, so do cells in the hair follicles, stomach lining, and bone marrow. If the treatment is too severe, it can kill off a patient's bone marrow, which is generally not a good thing, since it is needed to produce new blood cells. So what they can do is harvest the patient's bone marrow, do a more powerful chemo treatment than they'd be able to do otherwise, and then reinject the harvested marrow after the chemo has been completed.
He said I would be a good candidate for this procedure (since I'm young and generally healthy, except for, you know, having cancer) and he would contact the U of M Cancer Center immediately to send them his records and impress upon them how things need to move quickly. I hope to be able to see someone next week. Wherever I go, Dr. Coello said that chemo treatments would most likely relieve my pain in as little as 2 to 3 weeks. I am very much looking forward to that, although in the meantime I did ask for a form to get a handicapped sticker from the Secretary of State's office, and my library director and associate director arranged a handicapped permit for my car that will allow me to park by the library loading dock. I'm officially differently-abled! I'm handicapable!
I will be slightly embarrassed to tell the oncologist assigned to me by my new primary care office that I will actually be heading elsewhere, but if he's professional, he won't mind my seeking care that I'm comfortable with.
What I wonder is, what do they do with the bone marrow once they've sucked it out and before they squirt it back it? Is it kept in jiggling piles on petri dishes? Do they load it into tubes to be extruded back into place? Do they use little tiny turkey basters to suck it up, freeze it, then let it thaw and squeeze it back in? Do they ever get the samples mixed up and could I end up with the bone marrow of an NBA draft pick? Will it improve my game? Medical science contains so many mysteries.
Labels: bone marrow transplant, chemo, Dr. Coello, handicapped, hip, University of Michigan Cancer Center
