Well, I survived the 1st of the 3 kyphoplasty operations, although there
were times I wondered if I would. L1 was done under vertebroplasty, L2 & L3
under kyphoplasty, where they use a baloon to expand the site. Today is 5
days after the procedure, and there is virtually no pain where the procedure
was performed. I've also noticed that I can walk a little straighter with no
pain, but my body, from old habits, wants to huntch, so I,ve got to be
conscious of that. I don't get the pain I used to get when trying to walk
straight.
The only problem I've had is that the procedure is done with me laying on my
stomach. I believe that sometime during the procedure, I cracked a rib on my
right side up high. The pain is pretty sharp, especially if I try to breathe
deeply. Some extra percocet has helped with that. In the past the fractures usually
heal in about 2 weeks or so. This one really scared me because of the pain I felt when I tried to breathe deeply.
I've noticed a slight improvement in the last 2
days. Hopefully, by turkey day, there will be further improvement, since we're going away to Arlene's son for the holiday.
My next procedure will be my parathyroidectamy scheduled for Friday 12/14,
followed by my 2nd kyphoplasty on 12/19, a Wednesday. This is only 5 days
apart, while ideally it should be a week. It's a little close, but because
of scheduling problems, it can't be helped. It should be ok as long as I
don't crack another rib. The 3rd kyphoplasty will be scheduled after the 2nd one is done.
Have a nice thanksgiving everyone. Be thankful and appreciative of what you have rather than sad because of the things you don't or no longer have.
Monday, November 19, 2007
Thursday, November 8, 2007
Surgery
What a fool I was to think I would go 3 weeks without seeing a doctor. This week I have 2 doctor appointments - Tuesday with an interventional radiologist at Kaisers spine center in Oakland, and tomorrow with a psiatrist (thats a physical medicine doc) locally. But good news followed my 1st appt and I hope good news follows my appt tomorrow.
Tuesday was cool. I got to look at x-rays of my spine. Almost every vertebrae was broken via compression fracture. The doc was cool too. Our appt lasted 1 1/2 hours and I felt like I was his only patient. Dr T., the radioligist, explained everything about vertebroplasty/kyphoplasty. I will have a series of 3 operations during which he will repair 3 vertebrae per procedure. More is dangerous. There will be a minimum of 3 weeks between procedures. He's done about 400-500 of these, and never had a problem. My 1st procedure will be next Wednesday 11/14. We will stay in Oakland at a hotel the night before and the night after the procedure, which is done under a local anesthesia with no overnight stay in the hospital. With any luck, I can schedule this out to be completed no later than the 2nd week in January. Dr T will use a comination of the 2 procedures depending on the vertebrae and the fracture. He states that he has not seen the height gain with kyphoplasty described in the literature. He expects the procedures to reduce my pain at least by 75% if not more, and eliminate the hunching over when I walk. He also told me that the procedure may bring on more fractures, but they would deal with them.
The cement that they use starts out the consistancy of toothpaste, hardens after 5 minutes to the consistancy of clay, and then becomes solid like cement. The vertabrae can never be broken again. If they dig me up 200 years from now and examine my spine, they're going to wonder what the hell went on with me, with a cement spine.
After this is all over, Arlene and I will go away for a week. We both need it. I'm so happy that there is an end in sight to my misery.
Tuesday was cool. I got to look at x-rays of my spine. Almost every vertebrae was broken via compression fracture. The doc was cool too. Our appt lasted 1 1/2 hours and I felt like I was his only patient. Dr T., the radioligist, explained everything about vertebroplasty/kyphoplasty. I will have a series of 3 operations during which he will repair 3 vertebrae per procedure. More is dangerous. There will be a minimum of 3 weeks between procedures. He's done about 400-500 of these, and never had a problem. My 1st procedure will be next Wednesday 11/14. We will stay in Oakland at a hotel the night before and the night after the procedure, which is done under a local anesthesia with no overnight stay in the hospital. With any luck, I can schedule this out to be completed no later than the 2nd week in January. Dr T will use a comination of the 2 procedures depending on the vertebrae and the fracture. He states that he has not seen the height gain with kyphoplasty described in the literature. He expects the procedures to reduce my pain at least by 75% if not more, and eliminate the hunching over when I walk. He also told me that the procedure may bring on more fractures, but they would deal with them.
The cement that they use starts out the consistancy of toothpaste, hardens after 5 minutes to the consistancy of clay, and then becomes solid like cement. The vertabrae can never be broken again. If they dig me up 200 years from now and examine my spine, they're going to wonder what the hell went on with me, with a cement spine.
After this is all over, Arlene and I will go away for a week. We both need it. I'm so happy that there is an end in sight to my misery.
Saturday, October 27, 2007
A vacation
Unbelievable - 3 weeks without any doctor's appointments. I only have labs which can be done at my convenience. A vacation of sorts.
Friday, I had my MRI which will determine whether I can have the kyphoplasty operation. I should know this week. As usual, there was pain associated with the MRI, being in 1 position for 45 minutes without moving. Unfortunately, it carried over the rest of the day. BUT, I took Arlene to lunch after the procedure. I suprised her by suggesting it and it was nice.
At Kaiser, the sqweeky wheel gets the grease. I bitched to enough people about the long wait for the operation on my parathyroids. I got a call from the surgery scheduler on Thursday, stating she had an opening for the surgery in mid December. Of course, I accepted it as it was better than the end of January. I had a chance to talk to her about my situation, and she promised me that should there be a cancellation before then, she would contact me. That's great.
I've had some rib fractures due to the osteoporosis, and I had e-mailed my oncologist about them, just to let him know, since you basically don't treat rib fractures. I got a response on Thursday in which he actually cracked a joke and signed it with his first name only - no MD, etc. I thought that was great - here's a doc that actually can act like a human being. I had also seen him on Monday for my monthly appointment. He had promised to intercede on my behalf to try to get the parathyroid operation moved up. He also confirmed that the leukemia is still stable and that at this time he doesn't want to treat it. We'll see how that winds up when all this other stuff gets done.
The prior weekend, Arlene and I went to see our new granddaughter - a 122 mile trip one way.
We decided to check out property in a beach area about a half-hour away from them since I can't physically do the trip back and forth in 1 day. I figured it would double as a vacation home. Too expensive for us, even with "depressed prices" in the area. The visit itself was nice. I got to hold and feed her while I was there and she didn't even cry. Very nice.
We finally sent the hospital bed back. Yea - we got our family room back. I got a sleeping wedge to use on a regular bed. That worked real well for me. I also got a gel-foam pad that came with the hospital bed. Those 2 things help me sleep well in a regular bed.
A reunion buddie of mine keeps telling me to "keep the faith". I Am
Friday, I had my MRI which will determine whether I can have the kyphoplasty operation. I should know this week. As usual, there was pain associated with the MRI, being in 1 position for 45 minutes without moving. Unfortunately, it carried over the rest of the day. BUT, I took Arlene to lunch after the procedure. I suprised her by suggesting it and it was nice.
At Kaiser, the sqweeky wheel gets the grease. I bitched to enough people about the long wait for the operation on my parathyroids. I got a call from the surgery scheduler on Thursday, stating she had an opening for the surgery in mid December. Of course, I accepted it as it was better than the end of January. I had a chance to talk to her about my situation, and she promised me that should there be a cancellation before then, she would contact me. That's great.
I've had some rib fractures due to the osteoporosis, and I had e-mailed my oncologist about them, just to let him know, since you basically don't treat rib fractures. I got a response on Thursday in which he actually cracked a joke and signed it with his first name only - no MD, etc. I thought that was great - here's a doc that actually can act like a human being. I had also seen him on Monday for my monthly appointment. He had promised to intercede on my behalf to try to get the parathyroid operation moved up. He also confirmed that the leukemia is still stable and that at this time he doesn't want to treat it. We'll see how that winds up when all this other stuff gets done.
The prior weekend, Arlene and I went to see our new granddaughter - a 122 mile trip one way.
We decided to check out property in a beach area about a half-hour away from them since I can't physically do the trip back and forth in 1 day. I figured it would double as a vacation home. Too expensive for us, even with "depressed prices" in the area. The visit itself was nice. I got to hold and feed her while I was there and she didn't even cry. Very nice.
We finally sent the hospital bed back. Yea - we got our family room back. I got a sleeping wedge to use on a regular bed. That worked real well for me. I also got a gel-foam pad that came with the hospital bed. Those 2 things help me sleep well in a regular bed.
A reunion buddie of mine keeps telling me to "keep the faith". I Am
Monday, October 15, 2007
The reunion
This past weekend was our annual reunion. I went Friday and came home Saturday night. Sleeping over was not the best for me. Sunday I was sore all over - like I overdid it.
The weekend was everything it was cracked up to be. I didn't get too many short jokes. 5 minutes after we were all there, we all talked about where it would be next year. Everyone was mellow. Saturday we went to the cliffs overlooking the beach. The conversations were never ending. A good time was had by all. The house left a little to be desired, but at least we were all under 1 roof.
This past week they discovered an adenoma - a benign tumor - on my one of my parathyroids (there are 4 glands). This has caused the excess parathyroid hormone in my blood which has leached the calcium from my bones giving me osteoporosis. They are going to schedule surgery for me in January- they're all booked up till then and my levels are not high enough to warrent bumping someone from the schedule. The surgery is done as an outpatient, which is nice. They remove the tumor and while I'm still open, check my parathyroid levels. If they return to normal, they close me up and send me home. If the levels are still high, they remove most of the other 3 glands, close me up and send me home.
At the same time, my oncologist found that they do kyphoplasty at their facility in Oakland, about 60 miles away. My oncologist sent a referrel and they've scheduled me for an MRI to see if I qualify medically. If I qualify medically, they will schedule me after I have my parathyroids done - it's best done when my blood calcium is stable. The kyphoplasty will restore most of my lost height and there is a 95% chance it will rid me of my pain. FINALLY TO BE FREE OF TAKING PAIN MEDS. I should also be able to walk straight up, not hunched.
This has been a good week for me.
The weekend was everything it was cracked up to be. I didn't get too many short jokes. 5 minutes after we were all there, we all talked about where it would be next year. Everyone was mellow. Saturday we went to the cliffs overlooking the beach. The conversations were never ending. A good time was had by all. The house left a little to be desired, but at least we were all under 1 roof.
This past week they discovered an adenoma - a benign tumor - on my one of my parathyroids (there are 4 glands). This has caused the excess parathyroid hormone in my blood which has leached the calcium from my bones giving me osteoporosis. They are going to schedule surgery for me in January- they're all booked up till then and my levels are not high enough to warrent bumping someone from the schedule. The surgery is done as an outpatient, which is nice. They remove the tumor and while I'm still open, check my parathyroid levels. If they return to normal, they close me up and send me home. If the levels are still high, they remove most of the other 3 glands, close me up and send me home.
At the same time, my oncologist found that they do kyphoplasty at their facility in Oakland, about 60 miles away. My oncologist sent a referrel and they've scheduled me for an MRI to see if I qualify medically. If I qualify medically, they will schedule me after I have my parathyroids done - it's best done when my blood calcium is stable. The kyphoplasty will restore most of my lost height and there is a 95% chance it will rid me of my pain. FINALLY TO BE FREE OF TAKING PAIN MEDS. I should also be able to walk straight up, not hunched.
This has been a good week for me.
Saturday, October 6, 2007
My upcoming week
This morning, I got a call from one of my reunion buddies who lives in LA. Wanted to know how I was doing and my plans for the reunion. I told him. We BS'd for a while and then said goodby. I really felt good after the call- it got me thinking about friends and how good it is to have some, even if you only see them once a year. Especially friends you've known since you were a teen ager and with whom you've raised a little hell in your younger years. These are people you can say anything to, insult all the time, and can talk about the most intimate things.
I had a major accomplishment this morning. Arlene's computer is connected wirelessly to the internet and for the last month it's been giving us problems, shutting the connection unexpectedly. I tried a new wireless usb adaptor - same problem. So screw it, I decided to hardwire it to my dsl modem. I did it. Lots of moaning and groaning with back pain as I was working (its in another room). When done, I had to rest for a while. A month ago, there was no way I would ever try doing that. YEA FOR ME. The computer is working fine now.
I no longer use any kind of support around the house. No canes, no walkers. Just me and my two feet. What a good feeling that is. My back hurts after I walk in the house, but I expect that.
My doctor will find out where in Kaiser they do kyphoplasty. This will relieve the pain and restore some of the height I've lost. This will get done after my parathyroid surgery, which I'll find out about this wednesday.
The other day, I tried laying in our king size bed - painful if I lay straight on my back. My mind is working tho, and I think about a wedge pillow, which would approximate the angle of my hospital bed, where I sleep with no discomfort. I find several on the internet. I will order one next week and this should allow me to get rid of that hospital bed we have in our family room.
I'm looking forward to the coming week - more medical answers and my reunion.
I had a major accomplishment this morning. Arlene's computer is connected wirelessly to the internet and for the last month it's been giving us problems, shutting the connection unexpectedly. I tried a new wireless usb adaptor - same problem. So screw it, I decided to hardwire it to my dsl modem. I did it. Lots of moaning and groaning with back pain as I was working (its in another room). When done, I had to rest for a while. A month ago, there was no way I would ever try doing that. YEA FOR ME. The computer is working fine now.
I no longer use any kind of support around the house. No canes, no walkers. Just me and my two feet. What a good feeling that is. My back hurts after I walk in the house, but I expect that.
My doctor will find out where in Kaiser they do kyphoplasty. This will relieve the pain and restore some of the height I've lost. This will get done after my parathyroid surgery, which I'll find out about this wednesday.
The other day, I tried laying in our king size bed - painful if I lay straight on my back. My mind is working tho, and I think about a wedge pillow, which would approximate the angle of my hospital bed, where I sleep with no discomfort. I find several on the internet. I will order one next week and this should allow me to get rid of that hospital bed we have in our family room.
I'm looking forward to the coming week - more medical answers and my reunion.
Sunday, September 30, 2007
My UCSF Visit
Saw my UCSF oncologist on Friday. He concurred with my Kaiser oncologist that my CMML was the least of my problems right now as it is still under control and not showing any signs of progression. Good.
He told me about a procedure called kyphoplasty which can restore most of the lost height that I have suffered due to my compression fractures in my spine. It's a minimally invasive procedure.
Don't know if Kaiser pays for it, but will look into it when the other stuff gets done.
My parathyroid scan is scheduled for next monday, the 8th. It's another procedure that involves injection of radioactive stuff and a series of x-rays. After that is done, I'll be scheduled for surgery if that's the decision based on the results. My endocrinologist keeps telling me that I have the option of NOT doing the surgery. How can that be an option if my bones continue to break due to excessive parathyroid hormone in my body????? Do they want me to lose another 4 to 6 inches in height????
I need to make a decision regarding my upcoming reunion. I will probably just go for 1 day on
Saturday. I'll be hampered by my inability to walk normally - and I start physical therapy on Monday - but I'll still be able to see everyone and yes, they'll squeeze 2 days of crap that they'll give me into 1 day.
I still believe I'm going to get thru all this crap that's happened to me to where my only problem will be the leukemia.
He told me about a procedure called kyphoplasty which can restore most of the lost height that I have suffered due to my compression fractures in my spine. It's a minimally invasive procedure.
Don't know if Kaiser pays for it, but will look into it when the other stuff gets done.
My parathyroid scan is scheduled for next monday, the 8th. It's another procedure that involves injection of radioactive stuff and a series of x-rays. After that is done, I'll be scheduled for surgery if that's the decision based on the results. My endocrinologist keeps telling me that I have the option of NOT doing the surgery. How can that be an option if my bones continue to break due to excessive parathyroid hormone in my body????? Do they want me to lose another 4 to 6 inches in height????
I need to make a decision regarding my upcoming reunion. I will probably just go for 1 day on
Saturday. I'll be hampered by my inability to walk normally - and I start physical therapy on Monday - but I'll still be able to see everyone and yes, they'll squeeze 2 days of crap that they'll give me into 1 day.
I still believe I'm going to get thru all this crap that's happened to me to where my only problem will be the leukemia.
Tuesday, September 25, 2007
Some Answers
"Right now, the leukemia is the least of your concerns". That's a direct quote from my oncologist at Kaiser.
I saw the endocrinologist yesterday, and basically she told me that I need surgery on my parathyroids. My hormone level is high and my calcium level is high normal. The parathyroid hormone is basically a calcium regulator and too much of the hormone will cause your bones to lose calcium and become weak. That is what is happened to me and why I fractured my hip and have had compression fractures in my ribs and spine. She needs to do 2 more tests - 24 hour urine and parathyroid scan - to confirm the diagnosis, then hi ho, hi ho, it's off to the hospital I go. At least I have an answer. It's a "short surgery" involving an overnight stay. I also found out that I HAVE SHRUNK 4 INCHES in the last 7 months. Amazing. Arlene and I are the same height. I never knew I would become a little person. My BMI shot up to over 28 from 25. I've gone from 165 to 158 lbs, but I guess I'll have to lose some weight now too.
I also saw my oncologist yesterday. The bone marrow biopsy shows very little change from the previous biopsy. The leukemia is stable and the least of my concerns. He also cut my labs down to every 2 weeks instead of every week. YEA - 1 less trip to kaiser. He also urged me to get the parathyroid surgery in case I had any doubts. During the exam, while checking my spleen, I felt a sharp pain from my ribs and I yelled out. I think I scared the shit out of the doctor. I hope he didn't cause a fracture on a rib - he says no or I would continue to feel pain. Guess what - today I'm feeling pain in the area. I'll let him know.
This morning I saw the orthpedist. I'm done with him - the hip fracture has healed nicely, even though I still can't walk normally without pain in my back. He says to continue my walking exercise to strengthen the area and not to worry about hunching over. I will do that as well as work with physical therapy. I can walk a little bit without any help - cane, walker, etc, but then I get pain in my back and hunch over. This will take time to work out.
I did see the report on my bladder cancer - non-invasive and low grade was how it was described. I have to see if there's another way to monitor me other than sticking a scope up my dick every 3 months.
All in all, I'm feeling pretty positive about what I've learned. Now I'll see my oncologist at UCSF, confirm everything my kaiser doc told me, and continue with my life, enjoying the things that I have and the loving people around me.
I saw the endocrinologist yesterday, and basically she told me that I need surgery on my parathyroids. My hormone level is high and my calcium level is high normal. The parathyroid hormone is basically a calcium regulator and too much of the hormone will cause your bones to lose calcium and become weak. That is what is happened to me and why I fractured my hip and have had compression fractures in my ribs and spine. She needs to do 2 more tests - 24 hour urine and parathyroid scan - to confirm the diagnosis, then hi ho, hi ho, it's off to the hospital I go. At least I have an answer. It's a "short surgery" involving an overnight stay. I also found out that I HAVE SHRUNK 4 INCHES in the last 7 months. Amazing. Arlene and I are the same height. I never knew I would become a little person. My BMI shot up to over 28 from 25. I've gone from 165 to 158 lbs, but I guess I'll have to lose some weight now too.
I also saw my oncologist yesterday. The bone marrow biopsy shows very little change from the previous biopsy. The leukemia is stable and the least of my concerns. He also cut my labs down to every 2 weeks instead of every week. YEA - 1 less trip to kaiser. He also urged me to get the parathyroid surgery in case I had any doubts. During the exam, while checking my spleen, I felt a sharp pain from my ribs and I yelled out. I think I scared the shit out of the doctor. I hope he didn't cause a fracture on a rib - he says no or I would continue to feel pain. Guess what - today I'm feeling pain in the area. I'll let him know.
This morning I saw the orthpedist. I'm done with him - the hip fracture has healed nicely, even though I still can't walk normally without pain in my back. He says to continue my walking exercise to strengthen the area and not to worry about hunching over. I will do that as well as work with physical therapy. I can walk a little bit without any help - cane, walker, etc, but then I get pain in my back and hunch over. This will take time to work out.
I did see the report on my bladder cancer - non-invasive and low grade was how it was described. I have to see if there's another way to monitor me other than sticking a scope up my dick every 3 months.
All in all, I'm feeling pretty positive about what I've learned. Now I'll see my oncologist at UCSF, confirm everything my kaiser doc told me, and continue with my life, enjoying the things that I have and the loving people around me.
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