LEUKEMIA - went to the oncologist at UCSF on the 23rd and got a big scare. My platelet count at UCSF was 11. This is dangerously low and totally inconsistent with the counts that I have had at Kaiser, which run in the 40's. He suggested that I confirm the low count with another test at Kaiser, which I did later that afternoon. That test showed a platelet count of 49 - low but certainly not dangerous. I can't believe , while there are certainly lab differences, that Kaiser has been consistently wrong for 2 years. Had the count of 11 held up, he would have recommended treatment with Dacogen or Vidaza. But as it now stands, after reviewing my latest bone marrow biopsy and my blood values, he is in agreement with my oncologist at Kaiser that we continue to do nothing as all my blood values are stable. He will call my oncologist at Kaiser to touch base. I'll see him in another 6 months unless there is a change in my stability. It sure is nice to have an expert to see every few months.

PARATHYROID - I continue to have my high pitched voice 4 months after the surgery although there are times in the morning that the voice sound a little more normal. I just saw the surgeon and he reviewed my options. He can inject the vocal cord, using a large curved needle which goes down my throat to give me relief. This is a temporary measure which will last 2-3 months. The thought of the needle makes me want to gag, so I rejected that out of hand. I could have surgery under a local anesthetic where they permanently inject the cord to move it closer to the other cord while I am awake (so they can monitor my voice). When the surgeon looked at my vocal cord, he "could almost see some movement". I decided to do nothing at this time giving it a little more time to see if the vocal cord recovers on its own, which can take up to a year. I see him in another 3 months. I was told that statistically, this problem occurs with 10% of parathyroid surgery. In the meantime, my bones are getting stronger now that I no longer have a tumor robbing me of my calcium.

KYPHOPLASTY - Had my last kyphoplasty surgery on May 6th. This time , I did not crack a rib. Unfortunately, I am still in some pain from the surgery and it did not improve my ability to walk. If anything, It made it worse although it seems to be starting to improve now. I still need my walker to walk any distance and I have pain in my back when I go to sleep. I see the surgeon in another 1 1/2 weeks to see what's going on. By the way, the kyphoplasty was supposed to restore some of the height I lost due to the compression fractures of the spine. I gained a whole 1/2 inch. I am now 5' 3 1/2 inches tall, down from 5'7". WOW - THAT's A REAL BIG DIFFERENCE.

In other health issues, I had a cholesterol test and psa test done. If you can believe this, I had a cholesterol value of 98 and I don't take cholesterol drugs. Extremely good. I celebrated the news by going out and eating a steak. My PSA value was 0.8, also very good and consistent with my range of values over the past 10 years. I had a 6 month checkup of my bladder and it remains cancer free. No gout attacks for the last 4 months.

Arlene and I managed to get away for a week and went to the beach. It was really nice to get away. My goal over the next 2 years is to build my strength up so in the next 2 years I have a real choice to make as to whether to undergoe the mini cell stem transplant which can cure the leukemia.

My last kyphoplasty

Finally had my last kyphoplasty surgery on may 6th. NO CRACKED RIBS this time. Maybe my bones are getting stronger finally. Went home and had alot more pain this time. I may have had this pain on my previous 2 operations but didn't notice it because of the cracked ribs. Anyway, the pain lasted about a week before letting up. Has the whole kyphoplasty procedure done any good? I don't know. I have not regained any lost height to speak of. I haven't really started any physical therapy or exercises yet. That'll come next week. I seem to be a little more stable when I walk, but still have to use a walker for any distance walking. All I know is that when they dig me up 200 years from now, they'll say "What's with this dude with all the cement in his back?"

My voice still has not gotten back to normal. I keep thinking that its starting to change back to a more normal voice, but by the end of the day, it's back to being high pitched again. I have an appointment with the doctor re this next week and we'll see what he says. My oncologist says not to get the surgery to correct this unless it's a "slam dunk". We'll see. I'm tired of doctors and surgery and don't want to do any more unless it's life saving.

I also have an appointment at UCSF with my oncologist there. I'm going to have him review my last bone marrow biopsy and see where we go from here regarding treatment, if any. My blood tests continue to show stablilty with the leukemia. The only effects I have from it are my low platelets and my borderline anemia. My oncologist at Kaiser doesn't want to treat me since I'm so stable, but my concern is 2 years from now. That's when I have to decide about having the mini stem cell transplant procedure. If I undergo it, I have to be strong physically to survive, but it can CURE the leukemia. We shall see.

Off the subject, last December I got a new computer with the VISTA operating system, the "computer destroyer" version of vista. Last week I had to reinstall the operating system because it got so screwed up. Dealing with India for tech support was another experience. I am now very careful as to what goes on the computer and create a restore point before I add any software.
&^%$*#$ Microsoft.

Good Numbers

Saw my oncologist at Kaiser on Monday. Besides the usual, he ran some other tests. My overall cholesterol was 98 - extremely low and I don't take cholesterol drugs. My PSA was 0.8 - also very low. All very good. My doc seemed to feel I was also putting on muscle mass. Again, very good. My weight seemed to have stabilized at 150 lbs where I want it to be. My blood test numbers were also good and stable. He's decided to give me an iron sucrose injection to fight my anemia. While my numbers are stable, I can't "catch up" to get normal values with oral iron, so this is to boost my iron stores. Next week I get my final kyphoplasty surgery and hopefully, I won't break a rib.

Last week, Arlene and I went to the beach for a week. Unfortunately, there was some construction going on next door, but the sounds of the ocean blocked the noise for the most part. Totally relaxing, I got a tan on my face, and I read 5 books. The views from the balcony were killer views. Our kids came over on Saturday and that was nice. Our granddaughter is becoming a person.

The week did me alot of good mentally. I feel good overall and confident about the future and thoroughly believe I can beat this leukemia, at least for a while longer. It's stable, it has not advanced since I was diagnosed almost 2 years ago. I was told the average life expectancy after diagnosis of this type of leukemia is about 2 years and its been almost that time now. When I asked the doc when I would be treated for it, he told me hopefully never. It's made me value the people I have around me now and not take anything for granted. Till next time

No news is good news

No news is good news. Had 2 doctor appointments last week. The urologist examined my bladder and indicated that it remains free of cancer. My oncologist basically said that the leukemia remains stable, my anemia is improving, my color has returned and my mental attitude has improved. According to him, I could live like this for years.

I continue to have some pain in some areas of my back. My final kyphoplasty surgery on my spine was cancelled by the doctor and rescheduled for May 6th. I think it was a bullshit cancellation - he had to go to a conference - yea yea. Hopefully that procedure will relieve the pain. I walk without any aids except if I walk distances, in which case I need my walker. But I get around fine with no walking aids doing everyday tasks.

My voice remains high pitched from my parathyroid surgery. Apparently, one of the vocal cords still isn't moving. I see the doctor on this around the end of May. It can take up to a year for the condition to correct on its own. If it doesn't correct within a year, it's permanent. It's also creating some other minor problems for me. There is a surgical procedure to correct this which is done under general anesthesia and generally does not involve a hospital stay. (that's what they said about my parathyroid surgery). I will think long and hard before I get it done, but if I get it done, it'll have to be before the next reunion with my buddies because I'll never hear the end of it if I go with a high pitched squeaky voice.

Looking forward to getting away from here in less than 3 weeks. I love our house and its location in the hills, but after being cooped up here this past winter, Arlene and I just need a change of scenery.

I'M BACK

I've been thru hell the last 3 months and I haven't felt like blogging. I've undergone a parathyoidectamy - the operation from hell - from which I'm still recovering. This was supposed to be a 1 1/2 hour outpatient surgery which turned out to be a 4 1/2 hour inpatient procedure. It was supposed to be done in December, but had to be postponed till January because of a fever I developed. My little benign fucking adenoma on one of my parathyroid glands- the cause of all my problems this past year - was hiding underneath some blood vessels AND THEY HAD A HELL OF A TIME FINDING IT. I'm thankful my surgeon was experienced and commented that it was one of the worst cases he's had in a while. I'm still not recovered - my voice is high pitched and can take up to a year to fully recover to normal. Something about one of my vocal cords not moving, which can be surgically corrected, but for now I'm opting to wait. The louder I talk, the higher pitched my voice sounds.

I had my 2nd kyphoplasty in January and have postponed my 3rd one till the end of march. My body needs to heal. So far, it hasn't helped like it was supposed to. I need my walker if I want to walk any distance. I try to walk about 1/2 mile a day, but don't always do it. I've been able to reduce my pain meds substantially: no more morphine and only 1 or 2 oxycodone a day, so maybe it has helped.

My leukemia is still stable. I had thought it was "acting up" since a had some unexplained fever and have lost alot of weight without trying. My normal weight was about 165 and I was 5'7" tall.
My new height is 5'3" due to the compression fractures in my spine. Some weight loss was going to happen because of my lost height, but I got to 137 lbs and looked like a scarecrow. This morning I was 144 lbs. I can eat whatever I want - all the fattening foods - and I am slowly gaining weight back. Arlene is jealous. I want to get to 150lbs as a goal.

Anyway, my doctor decided to do another bone marrow biopsy. Results - same as the last one in August which is essentially the same as the one I had when I was diagnosed. My leukemia is still stable and I will not be treated for it for now.

During the last 3 months, I was emotionally fucked up. I kept thinking I was going to die. I've spent many nights afraid to fall asleep for fear of not waking up. I'd watch TV, see something sad, and start crying for no reason. I'm over the fear for now. Arlene was great during this time and really helped me over the rough spots. Bless her. Overall I'm in a good spot right now. We're planning a vacation - renting a house by the beach for a week , and I've had our RV serviced with the idea that we might take a trip soon. Good stuff.

I may not blog as often as I did in the past - just when I feel like it. But that's life. It's time for my walk.

1 Down, 3 to go

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.

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.

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

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.

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.

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.

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.

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 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.

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

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.

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.

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"

Some Answers

Tuesday, my daughter visited me - a 400 mile trip. It was a good visit and I enjoyed it alot. She had told me that she had a meeting in the city and would come up after that, but she lied. She came up on her own. It was a good lie. We had most of the day together.

Wednesday I had my bone scan. I was injected with the radioactive stuff, went away for 3 hours, came back and they did it. It wasn't too bad and I did not glow in the dark.

Thursday, I noticed that my pain had decreased. Good. I could use less pain. I also went for a walk with my walker, but I'm still having problems walking straight - I have to hunch over. Without my walker, I can't walk more that 5 minutes without getting real tired, whether I walk with or without my cane, and I can walk without my cane.

Today I got a call from my doctor. The bone scan showed that I had healing fractures of my ribs - several of them. I also have one in my spine. The doctor called them compression fractures. Have no idea how I got them. We talked about my previous use of steroids and he believes that the steroids made my bones brittle and subject to fractures. Treatment is with Fosamax, which I've started on already. The problem is that it takes about 3 months before any affects begin, so for the next 2 1/2 months I'll have to be really careful. I'm also noticing that other than being sore from my walk, I have very little, if any, pain. Good. I'll be able to cut back on some of my pain meds, which may increase my energy levels.

This also expains how I broke my hip, probably from some little activity that just put pressure on the bone, and it broke. I'm getting referred to an endocrinologist to make sure that a hormone from one of my glands (parathyroid) is not causing this. Now I've got to find out who I can see about walking hunched over.

I'm upset about all this crap. I envision my life as a semi-invalid unable to do the things I like to do, and a burden to Arlene, basically housebound. But she's helpful. "we could go on these old folks tours" or stuff like that. Maybe. We'll have to see. In the meantime, I've got to focus on getting better. Whatever time I have left, and it could be years although it doesn't feel like it today, I will make a life with Arlene. While I may be limited in what I will be able to do, I will be able to do some things, and I will enjoy them with Arlene.