Wednesday, September 10, 2008
The Hip Bone's Connected to the...Thigh Bone (isn't it?)
And so I've been having some hip pain for the last few days, which seemed to feel worse as I either twisted while putting weight on my left leg, or tried to roll over in bed.
Normally I would chalk it up to random soreness (like the pain in my shoulder I think comes from sleeping on my arm in a wonky manner), but I refuse to blow off pain in my hips, especially after the ordeal in 2005 which left me with pelvis crumbs, requiring a month-long stay in the hospital after seven months of useless and ineffective treatment, and required a move to an apartment without lots of stairs.
I was going to call my nurse practitioner about it in a few days if the pain hadn't gone away, but at infusion today the chemo nurse asked if I was having any pain. So I admitted that I was, that it wasn't bad, but I was wondering if I should get an ex-ray or something. So I spoke to the PA, who set me up with ex-rays right away. They got a wheelchair for me--it was very wide; I felt compelled to make beeping noises as we rolled down the hallway--because they didn't want my hip to blow out as I was on my way for a diagnostic test.
The results did show some "activity." Unlike the last time, the part that's becoming a little spongy is the spot connecting the main part of my left femur with the ball joint that fits into the socket of the pelvis. I think there's also some damage on the top ridge of my pelvis. The PA told me I'd need more precise scans--which I am hoping do NOT include a CT with contrast dye because IVs are eeeeeeeeeeevil--and I'll be set up with an appointment to see the orthopedic surgeon. I saw her once before when I began treatment at U of M. There was noting to be done about my pelvis then, but there might be something to be done to "shore up" my femur.
I've got a cane now because I really don't want to tote a dorky old-person walker with me wherever I go. I need one of the hot-rod walkers that have the hand-brakes and built-in seat.
Normally I would chalk it up to random soreness (like the pain in my shoulder I think comes from sleeping on my arm in a wonky manner), but I refuse to blow off pain in my hips, especially after the ordeal in 2005 which left me with pelvis crumbs, requiring a month-long stay in the hospital after seven months of useless and ineffective treatment, and required a move to an apartment without lots of stairs.
I was going to call my nurse practitioner about it in a few days if the pain hadn't gone away, but at infusion today the chemo nurse asked if I was having any pain. So I admitted that I was, that it wasn't bad, but I was wondering if I should get an ex-ray or something. So I spoke to the PA, who set me up with ex-rays right away. They got a wheelchair for me--it was very wide; I felt compelled to make beeping noises as we rolled down the hallway--because they didn't want my hip to blow out as I was on my way for a diagnostic test.
The results did show some "activity." Unlike the last time, the part that's becoming a little spongy is the spot connecting the main part of my left femur with the ball joint that fits into the socket of the pelvis. I think there's also some damage on the top ridge of my pelvis. The PA told me I'd need more precise scans--which I am hoping do NOT include a CT with contrast dye because IVs are eeeeeeeeeeevil--and I'll be set up with an appointment to see the orthopedic surgeon. I saw her once before when I began treatment at U of M. There was noting to be done about my pelvis then, but there might be something to be done to "shore up" my femur.
I've got a cane now because I really don't want to tote a dorky old-person walker with me wherever I go. I need one of the hot-rod walkers that have the hand-brakes and built-in seat.
Labels: CT scan, hip, infusion, IV, Lita, stairs, walker, wheelchair, x-rays
Wednesday, February 07, 2007
Anniversary!
For a while I've been marking cancerversaries. November 5: my surgery date. November 3: second bone scan and confirmation of metastatic disease. December: hospital stay. I don't think I will be able to forget and keep from feeling unease when late fall rolls around again, but a new marker of passing time is coming up.
February 25 will be Brian and my first wedding anniversary. I confess that when we got married, I was not entirely convinced that I would be seeing an anniversary, but I am thrilled and relieved to comment that my notion of impending doom was silly and that we will be seeing many more anniversaries.
February 14 will be my first Valentine's Day as a married person. April 13 is the anniversary of our first date (at La Shish...Brian rode his Harley for optimum impact). Spring is considered to be a time of renewal and rebirth. Usually this is represented by bunnies, tulips, and Cadbury eggs. I represent it by throwing off the shackles of my wheelchair, walker, and Fentanyl patches, and by celebrating what is good instead of being mired in what's miserable.
February 25 will be Brian and my first wedding anniversary. I confess that when we got married, I was not entirely convinced that I would be seeing an anniversary, but I am thrilled and relieved to comment that my notion of impending doom was silly and that we will be seeing many more anniversaries.
February 14 will be my first Valentine's Day as a married person. April 13 is the anniversary of our first date (at La Shish...Brian rode his Harley for optimum impact). Spring is considered to be a time of renewal and rebirth. Usually this is represented by bunnies, tulips, and Cadbury eggs. I represent it by throwing off the shackles of my wheelchair, walker, and Fentanyl patches, and by celebrating what is good instead of being mired in what's miserable.
Labels: anniversary, bone scan, Brian, cancerversary, fentanyl, hospital, metastasis, motorcycle, surgery, walker, wedding, wheelchair
Friday, February 24, 2006
Entertainment Update: next Tuesday is going to be rather on the hectic side
I did indeed get tickets to see Spamalot; I ordered the tickets through a website that has a special option for acquiring wheelchair-accessible seating. I won't have to try to maneuver balcony steps in the dark with a walker and struggle over other people to get to a seat in the middle of a row. I am very excited about this.
Brian also received a message from a gentleman named Brad from The Late Show with David Letterman. So Brian asked me to call the number (Brian is not really able to take calls while at work) and suggested I have Google ready when Brad calls back because getting tickets involves answering a trivia question.
I called and left a message, and blurted something about next week being my honeymoon (it doesn't hurt to provide human interest...or to wheedle, as the case may be). Brad actually did call back regarding the Late Show tickets, the end result of the conversation being...Brian and I will be in the audience at The Late Show with David Letterman on the same day we are going to see Spamalot ! Set yo' VCRs, my peeps.
Brian also received a message from a gentleman named Brad from The Late Show with David Letterman. So Brian asked me to call the number (Brian is not really able to take calls while at work) and suggested I have Google ready when Brad calls back because getting tickets involves answering a trivia question.
I called and left a message, and blurted something about next week being my honeymoon (it doesn't hurt to provide human interest...or to wheedle, as the case may be). Brad actually did call back regarding the Late Show tickets, the end result of the conversation being...Brian and I will be in the audience at The Late Show with David Letterman on the same day we are going to see Spamalot ! Set yo' VCRs, my peeps.
Labels: Brian, honeymoon, Late Show, wheelchair
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
Tuesday, November 22, 2005
More Questions With No Answers
Will I start to feel better soon?
Will the new pain medication keep from making me ill so that I don't have to worry that the involuntary muscular spasms from heaving the remnants of last night's dinner and this morning's dose of medication into the sink will cause my hip agonizing pain?
Will I give up trying to go up and down the stairs altogether? I thought about cancelling the PET scan today because everything is so hard. I did actually cancel my first appointment for today and sent my mom instead to pick up a new prescription for oxycontin, which gives me something in common with Rush Limbaugh, who also got people to get his drugs for him. Getting down the stairs and into the car was hard. Luckily the hospital has wheelchairs, but they had to move me several times. First they loaded me into a chair in the scanner trailer (sort of like the one I thought was going to take me to Iowa for weird medical testing in some corn field), then they made me get out of the chair and use the little peoples' room (apparently the isotope collects in the bladder and obscures what they are trying to image), then load me onto a narrow table. After they were done, there was an ER nurse to help move me back onto the wheelchair.
I wonder what they saw in the image to go get a nurse.
I wonder how fragile the damaged bits really are. Brian wonders this, too. He said he looked at the ex-rays today but doesn't really know what it means because nobody has explained them.
The reason people shy away from asking things is that they are afraid of the answers. This I understand.
Will the new pain medication keep from making me ill so that I don't have to worry that the involuntary muscular spasms from heaving the remnants of last night's dinner and this morning's dose of medication into the sink will cause my hip agonizing pain?
Will I give up trying to go up and down the stairs altogether? I thought about cancelling the PET scan today because everything is so hard. I did actually cancel my first appointment for today and sent my mom instead to pick up a new prescription for oxycontin, which gives me something in common with Rush Limbaugh, who also got people to get his drugs for him. Getting down the stairs and into the car was hard. Luckily the hospital has wheelchairs, but they had to move me several times. First they loaded me into a chair in the scanner trailer (sort of like the one I thought was going to take me to Iowa for weird medical testing in some corn field), then they made me get out of the chair and use the little peoples' room (apparently the isotope collects in the bladder and obscures what they are trying to image), then load me onto a narrow table. After they were done, there was an ER nurse to help move me back onto the wheelchair.
I wonder what they saw in the image to go get a nurse.
I wonder how fragile the damaged bits really are. Brian wonders this, too. He said he looked at the ex-rays today but doesn't really know what it means because nobody has explained them.
The reason people shy away from asking things is that they are afraid of the answers. This I understand.
Labels: Brian, hip, hospital, PET scan, spasms, stairs, wheelchair, x-rays
Sunday, November 20, 2005
Now Playing the Part of Tiny Tim
I am getting better at maneuvering with the crutches they gave me at the ER.
Thursday evening I had an appointment with Oncologist #2, Dr. Khan. Because of my extreme gimpiness, I did not have to step onto the scale (let's all be thankful for small favors), the office staff felt very sorry for me and gave me a script for a wheelchair, and somebody in the waiting room who just happens to work at Oakwood hospital in the records department told Brian she would personally make sure that the films would all be arranged for me.
Friday I received a call from somebody at Oakwood named Amy who said the films were all arranged and ready for pickup. She also noticed that I had some tests done at Oakwood Annapolis hospital and wondered if I needed anything done with those. "Yes, I need those too," I told her. She said she would take care of everything and 20 minutes later called me back to say the Annapolis films would be ready Monday.
Wow. Sometimes these people can be on the ball.
I have also called Bon Secours to get slides from the Pathology department, and still have yet to contact anyone there about the films.
Today Brian picked up a stool for the shower (something else I have in common with Grandma), and it's so nice to feel clean! I think I'd like a hand-held shower nozzle better that what we've got right now, but being able to wash my hair at all was wonderful. I'm ready for my closeup--I even put on some makeup today--and I already know my line:
God bless us, every one!
Thursday evening I had an appointment with Oncologist #2, Dr. Khan. Because of my extreme gimpiness, I did not have to step onto the scale (let's all be thankful for small favors), the office staff felt very sorry for me and gave me a script for a wheelchair, and somebody in the waiting room who just happens to work at Oakwood hospital in the records department told Brian she would personally make sure that the films would all be arranged for me.
Friday I received a call from somebody at Oakwood named Amy who said the films were all arranged and ready for pickup. She also noticed that I had some tests done at Oakwood Annapolis hospital and wondered if I needed anything done with those. "Yes, I need those too," I told her. She said she would take care of everything and 20 minutes later called me back to say the Annapolis films would be ready Monday.
Wow. Sometimes these people can be on the ball.
I have also called Bon Secours to get slides from the Pathology department, and still have yet to contact anyone there about the films.
Today Brian picked up a stool for the shower (something else I have in common with Grandma), and it's so nice to feel clean! I think I'd like a hand-held shower nozzle better that what we've got right now, but being able to wash my hair at all was wonderful. I'm ready for my closeup--I even put on some makeup today--and I already know my line:
God bless us, every one!
Labels: Brian, crutches, Dr. Khan, Grandma, hair, Oakwood, wheelchair
