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.
Sunday, September 30, 2007
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.
Thursday, September 20, 2007
My new granddaughter
Went to visit my new granddaughter on Tuesday. I drove there and found the drive to be long, so Arlene drove home. We stayed later than I had wanted to stay and didn't get home till 11 PM - that's late for me.
The visit was great. She is soooooo cute. I held her for quite a while and she didn't cry. Maybe I'm less scary as I get older. She's just a month old, so I didn't expect her to do magic tricks or some other stuff, but there she was looking around, being a 1 month old baby. Then they grow up and become teenagers. Oh well.
I appreciate all the comments on the c-pap machine. I doubt that I'll ever use it, but it's there just in case.
Had an appt with my primary care doctor on monday as a follow up to my hospital stay. Discussed my fears about going to sleep and not waking up. Was told that there is no medical reason to fear not waking up. I am working on that and affirming to myself that I will wake up in the morning when I go to sleep. Last night I finally got a good night's sleep and hope that this pattern continues. And today I will walk.
Next week will be a busy one for me with 4 doctor appointments - endocrinologist, oncologist, orthopedist, and oncologist at UCSF. I hope to get some answers regarding my osteoporosis and brittle bones, my fractured hip, and my leukemia.
The visit was great. She is soooooo cute. I held her for quite a while and she didn't cry. Maybe I'm less scary as I get older. She's just a month old, so I didn't expect her to do magic tricks or some other stuff, but there she was looking around, being a 1 month old baby. Then they grow up and become teenagers. Oh well.
I appreciate all the comments on the c-pap machine. I doubt that I'll ever use it, but it's there just in case.
Had an appt with my primary care doctor on monday as a follow up to my hospital stay. Discussed my fears about going to sleep and not waking up. Was told that there is no medical reason to fear not waking up. I am working on that and affirming to myself that I will wake up in the morning when I go to sleep. Last night I finally got a good night's sleep and hope that this pattern continues. And today I will walk.
Next week will be a busy one for me with 4 doctor appointments - endocrinologist, oncologist, orthopedist, and oncologist at UCSF. I hope to get some answers regarding my osteoporosis and brittle bones, my fractured hip, and my leukemia.
Saturday, September 15, 2007
The c-pap machine sucks
The c-pap machine sucks. There's no other way to put it. I tried it 3 times last night and each time I had to pull the mask off. I had this tremendous feeling of panic with the mask on my face blowing air up my nose constantly. I had to fight to exhale - imagine a battle between my exhaled air and the c-pap air fighting to see who would win. All it did was panic me. I may try it again. Or not.
The whole reason for the machine was to make sure I would continue to breathe throughout the night. When in the hospital, while all doped up on opiates, I did have problems breathing. I blame that on the opiates. Once I cut back on the opiates, I had no problems I was aware of. The nurses who monitored my vitals said my oxygen saturation at night was in the low to mid 90's - a good value - and they couldn't understand why I needed the machine.
Last night, after I pulled the mask off, I didn't want to go to sleep. I was afraid of dying in my sleep, a feeling I did not have before the c-pap machine. Arlene finally took the machine and put it out of sight. Good. I hate the machine more for what it represents to me than what it actually is. I watched TV till I finally conked out and went to sleep. I also made a decision. I will no longer takes opiates before I go to sleep. I will also start using the nasal strips to help me get more air.
I've also decided to resume my walking. Because of the pain in my groin and the bladder operation, I stopped walking. I feel like I've been set back about 6 weeks and I refuse to accept that, so my walking resumes. I hope it also improves my attitude.
Tuesday, we're going to visit my new granddaughter. It's about a 2 hour drive and I'm going to do the driving, which will be good for me. I look forward to that as taking another step. It will also help me get out of this "poor me" funk I seem to be stuck in.
The whole reason for the machine was to make sure I would continue to breathe throughout the night. When in the hospital, while all doped up on opiates, I did have problems breathing. I blame that on the opiates. Once I cut back on the opiates, I had no problems I was aware of. The nurses who monitored my vitals said my oxygen saturation at night was in the low to mid 90's - a good value - and they couldn't understand why I needed the machine.
Last night, after I pulled the mask off, I didn't want to go to sleep. I was afraid of dying in my sleep, a feeling I did not have before the c-pap machine. Arlene finally took the machine and put it out of sight. Good. I hate the machine more for what it represents to me than what it actually is. I watched TV till I finally conked out and went to sleep. I also made a decision. I will no longer takes opiates before I go to sleep. I will also start using the nasal strips to help me get more air.
I've also decided to resume my walking. Because of the pain in my groin and the bladder operation, I stopped walking. I feel like I've been set back about 6 weeks and I refuse to accept that, so my walking resumes. I hope it also improves my attitude.
Tuesday, we're going to visit my new granddaughter. It's about a 2 hour drive and I'm going to do the driving, which will be good for me. I look forward to that as taking another step. It will also help me get out of this "poor me" funk I seem to be stuck in.
Thursday, September 13, 2007
C-Pap Machine
Upon release from the hospital, my hospital doc ordered a c-pap machine for me. This machine helps you breathe if you have sleep apnea, although it's a pain in the ass. (Maybe I'm putting it on at the wrong end). We picked it up yesterday, although they were out of "pillows" to use it in my nose. The pillows are coming.
Apparantly , the 1st night at the hospital, my breathing had stopped and the doc was afraid that without the machine, I might stop breathing and die in my sleep. That 1st night I was all doped up on opiates, which can affect your breathing, while the other nights, I had no problems. I will try to use it when the pillows come - I didn't want the mask, which can cover your face.
This is a $1200 item that I didn't especially want, which was paid for by my insurance and medicare. Imagine if I had wanted it. How many of you think the insurance would have paid for it??
I'm feeling better every day. My hospital bed is very comfortable, but my goal is to get into my old bed by the 1st of October. I'm looking forward to my reunion in October and in November, we're going to rent a house by the beach for a week just to get away from all the crap around here - no docs, lab tests, etc.
I want to thank each of you for all your kind thoughts and prayers, whether on my blog or Arlene's blog. I've had a chance to go thru and read them all and the idea behind each of them made me feel kind of "mushy". Thank you
Apparantly , the 1st night at the hospital, my breathing had stopped and the doc was afraid that without the machine, I might stop breathing and die in my sleep. That 1st night I was all doped up on opiates, which can affect your breathing, while the other nights, I had no problems. I will try to use it when the pillows come - I didn't want the mask, which can cover your face.
This is a $1200 item that I didn't especially want, which was paid for by my insurance and medicare. Imagine if I had wanted it. How many of you think the insurance would have paid for it??
I'm feeling better every day. My hospital bed is very comfortable, but my goal is to get into my old bed by the 1st of October. I'm looking forward to my reunion in October and in November, we're going to rent a house by the beach for a week just to get away from all the crap around here - no docs, lab tests, etc.
I want to thank each of you for all your kind thoughts and prayers, whether on my blog or Arlene's blog. I've had a chance to go thru and read them all and the idea behind each of them made me feel kind of "mushy". Thank you
Monday, September 10, 2007
The Cath is Out
Had my post-op meeting with my urologist today. He removed the catheter. He
also confirmed that the cancer I had, if one was to have cancer, was the
best kind to have. It was superficial and just on top of the bladder walls,
but not in the walls of the bladder. It was a non-invasive slow growing type
of cancer. And he confirmed that he did get it all.
This type of cancer tends to reoccur, so I will have to have checkups every
3 months to begin with. If no cancer is found, the checkups can be extended
to every 6 months. This is another one of those great visual exams where they insert a
cystoscope into the bladder and have a look-see. Great fun.
The bone marrow biopsy results are also back. No significant changes, which
means that the CMML - Leukemia - is still stable. YEA!!! At the end of the month, I'll meet with my Doc at UCSF and he'll review everything with me.
While in the hospital, one of the docs there worked at the Fred Hutchinson
Center in Seattle. He told me that when there were platelet donors there, he
always had them drink a beer or 2 before donating platelets because it
brings the platelet level up. Non-alcoholic beer also works, which is what
I'm now doing as alcoholic beer can bring on a gout attack. Too bad. I
wonder if I can write it off as a medical expense?
That might raise a red flag at the IRS.
I'm beginning to get a real positive feeling about the next 12 months. Yea, I got alot of crap I have to deal with - weak bones, parathyroid problems, broken but healing hips, pain, etc-
but I feel that these are just bumps in the road, and I will continue to increase the quality of my life. I want to do something really nice for Arlene and I'll have to figure that out.
also confirmed that the cancer I had, if one was to have cancer, was the
best kind to have. It was superficial and just on top of the bladder walls,
but not in the walls of the bladder. It was a non-invasive slow growing type
of cancer. And he confirmed that he did get it all.
This type of cancer tends to reoccur, so I will have to have checkups every
3 months to begin with. If no cancer is found, the checkups can be extended
to every 6 months. This is another one of those great visual exams where they insert a
cystoscope into the bladder and have a look-see. Great fun.
The bone marrow biopsy results are also back. No significant changes, which
means that the CMML - Leukemia - is still stable. YEA!!! At the end of the month, I'll meet with my Doc at UCSF and he'll review everything with me.
While in the hospital, one of the docs there worked at the Fred Hutchinson
Center in Seattle. He told me that when there were platelet donors there, he
always had them drink a beer or 2 before donating platelets because it
brings the platelet level up. Non-alcoholic beer also works, which is what
I'm now doing as alcoholic beer can bring on a gout attack. Too bad. I
wonder if I can write it off as a medical expense?
That might raise a red flag at the IRS.
I'm beginning to get a real positive feeling about the next 12 months. Yea, I got alot of crap I have to deal with - weak bones, parathyroid problems, broken but healing hips, pain, etc-
but I feel that these are just bumps in the road, and I will continue to increase the quality of my life. I want to do something really nice for Arlene and I'll have to figure that out.
Saturday, September 8, 2007
The catheter comes out on Monday
MONDAY - the catheter comes out - yea. I wonder if I get to keep it as a souvenier.
I've learned some interesting stuff. I drain my catheter bag into a male uninal for convenience. It helps if you open the urinal up when you drain, otherwise, you know where the stuff goes. It happened once and only once.
A friend of mine kept telling me to keep the faith. I think about that and it really helps.
Arlene tells me that my attitude has really improved. Wait till she sees the improvement when the catheter comes out.
My new bed is comfortable, but at some point it'll have to go and I'll be back in our bed. I look forward to that.
When I was in the hospital for the pain, both my kids came up. My daughter stayed with me all night at the hospital for 3 nights. I must have done something right in raising her. She didn't want me to be alone
I'm looking forward to improving my quality of life and spending time with Arlene.
I've learned some interesting stuff. I drain my catheter bag into a male uninal for convenience. It helps if you open the urinal up when you drain, otherwise, you know where the stuff goes. It happened once and only once.
A friend of mine kept telling me to keep the faith. I think about that and it really helps.
Arlene tells me that my attitude has really improved. Wait till she sees the improvement when the catheter comes out.
My new bed is comfortable, but at some point it'll have to go and I'll be back in our bed. I look forward to that.
When I was in the hospital for the pain, both my kids came up. My daughter stayed with me all night at the hospital for 3 nights. I must have done something right in raising her. She didn't want me to be alone
I'm looking forward to improving my quality of life and spending time with Arlene.
Thursday, September 6, 2007
Bladder cancer surgery
Yesterday, I underwent successful surgery for my bladder cancer:
1. The cancer was superficial - stage 0. It sat on my bladder and was
not involved with the bladder walls
2.The doctor believes he got all of it since it was superficial.
3. He believes it is the slow growing non aggressive type of cancer.
Pathology will have to confirm, but based on his experience, that's what he
believes. surgery was thru the urethra. Was I glad I was out.
I have a catheter in me which comes out on Monday. Miserable. I'll have to
undergoe checkups every 3 to 6 months since this cancer does tend to return,
but right now everything looks favorable. The surgery was done as an
outpatient. I was really scared about this one.
On the 29th, I was put in the hospital for uncontrolable pain. I was there
for 4 days till they were able to control the pain and while I was there I
developed a bladder infection. That was just great. At one point I wondered
if I was going to die there, but I keep remembering to keep the faith, as
Bruce is always saying. My kids both flew up from LA and I guess that's what
scared me. Bedpans, urinals etc - the whole 9 yards. ugh!!!
Both these hospital episodes scared the shit out of me and I thought I was going to die. I hate hospitals. If my diseases progress and I die, so be it, but at least leave me wth dignity and allow me what little time I may have to enjoy my family, including my new granddaughter "Maddy"
1. The cancer was superficial - stage 0. It sat on my bladder and was
not involved with the bladder walls
2.The doctor believes he got all of it since it was superficial.
3. He believes it is the slow growing non aggressive type of cancer.
Pathology will have to confirm, but based on his experience, that's what he
believes. surgery was thru the urethra. Was I glad I was out.
I have a catheter in me which comes out on Monday. Miserable. I'll have to
undergoe checkups every 3 to 6 months since this cancer does tend to return,
but right now everything looks favorable. The surgery was done as an
outpatient. I was really scared about this one.
On the 29th, I was put in the hospital for uncontrolable pain. I was there
for 4 days till they were able to control the pain and while I was there I
developed a bladder infection. That was just great. At one point I wondered
if I was going to die there, but I keep remembering to keep the faith, as
Bruce is always saying. My kids both flew up from LA and I guess that's what
scared me. Bedpans, urinals etc - the whole 9 yards. ugh!!!
Both these hospital episodes scared the shit out of me and I thought I was going to die. I hate hospitals. If my diseases progress and I die, so be it, but at least leave me wth dignity and allow me what little time I may have to enjoy my family, including my new granddaughter "Maddy"
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