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.