1/24/15 I am still hanging around but my hemoglobin has dropped to 7.2 requiring a blood transfusion.
1/10/15 We have called in Hospice and I am beginning to wish for stronger pain killers. Another PSA is due on January 26, but that is pretty irrelevant now.
12/15/14 The spike in the chart was not so bad as last month, but it’s pretty obvious I am headed for the end.
11/17/14 It looks very much like the party is over.
The chemotherapy ended in May and the "floating" period ended this month. The doctor had told me that the cancer would then resume it's course either quickly or slowly.
I asked him about the recent spike in the chart, up to 456.4. Was it indicative of quickly or slowly? The answer was “quickly.”
I asked him if I would get to buy an Apple Watch. He asked, "When are they coming out with it?" I said “In February." He said, “——Maybe.”
My take from this was, “If February is a ‘maybe’, then January is a ‘more likely’.
So if I were to estimate a time it would be the middle of January. I might guess 10 weeks minus a week in hospice, but it could be sooner.
Karen, my wife, said that I had beat the predictions before. She is such a sweet lady.
If one quarter of my body was affected and the cancer was advancing at 50 miles an hour, then we might have some sort of expectation. But I saw the scans over a year ago, and my entire skeleton was affected. Multiply that by 50 miles an hour and the outcome has to be much more daunting.
Thankfully, I learned to enjoy life every day, and my major goal is to clean up my act so I can be ready.
Karen and I are working together to make it the best possible.
Meanwhile, please tell someone else about this website, joes-site.net
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10/28/14 I have reached 80 (years), and thank all of you who have helped and/or supported me along the way.
10/24/14 Not much more information. The PSA has gone up, but not significantly according to the doctor. I think that the next PSA test report on Nov. 17 will be more significant.
8/25/14 The PSA came out today as a shocking 85, totally unexpected and very low, in fact the lowest ever. It will go back up; I’m not cured, but it buys me more time.
8/8/14 We are watching the slope.
As I mentioned before, the doctors have no other intervention to offer. The chemo ended on May 7. The PSA was 130.6 on May 19. It reached 102.6 at the lowest on June 9 and has started to go back up; 104.5 on June 30 and 132.9 on July 14. With no more chemo to keep it in check we don’t know how fast it will continue up or when the end will be. It took 6 weeks to get it down from 130.6 and only three weeks to climb back up even higher 162.1. I will keep on trying to predict, and of course the closer to the end the better the predictions will be.
7/30/14 It doesn’t look good.
Yes, it has been a while since March 5 and a lot has happened. Finally the chemo was doing more harm than good and the doctor has no other intervention to offer. The chemo ended on May 7. The PSA was 130.6 on May 19. It reached 102.6 at the lowest on June 9 and has started to go back up; 104.5 on June 30 and 132.9 on July 14. With no more chemo to keep it in check we don’t know how fast it will continue up. It took 6 weeks to get it down from 130.6 and only two weeks to climb back up even higher.
3/5/14
The PSA actually went down a little again, only to 171.4, which is not a significant amount. However, as I said before, better than up. Dr. Agrawall agreed that we could do one more round of chemo. That will begin next week.
2/18/14
A very pleasant surprise. My PSA taken on 2/10 actually went down a little to 196.9. The significance is that it DID NOT go up, which we were expecting, and which will certainly happen. But based on this I will probably get one or two extra months hanging around here.
2/11/14
Monday I began what may be my last round of chemotherapy. Apparently there are no more interventions on the horizon. After that we're talking palliative care. So it looks like the "honeymoon" is basically over. I have no idea what to expect. I will try to keep in touch. I'm thinking about trying to write a daily diary for as long as I am able.
2/7/14
My PSA may have bottomed out. It stopped moving down. The last three, since January 6 were 267, 233, but finally moving up to 250 this past Monday. It may not be significant, unless you believe in numbers. Nevertheless, I am still feeling fairly good considering the circumstances.
2/4/14
Previously I would go up and down the stairs every 9 minutes in order to keep loose. Now I am going up and down twice every 9 minutes as an exercise. This feels really good. I am looking forward to my next PSA; see the paragraph just below.
1/14/14
To make a long story short Dr. Agrawal has saved my life, so to speak. My PSA has come down from 1267 (and going up) to 267 as of January 6. I even began feeling happy.
9/5/13
PSA has been going up and down. From 1053 on July 15 to 711 and then 976 and recently 623 on August 26. This is definitely better than up and up.
Lack of control over urination and bowels. Urine is cloudy again and the frequency is sometimes three times an hour. I passed a blood clot through the urinary tract and I’m a little worried there may be more. There may be a urinary tract infection; I started taking medication for that.
Meanwhile, the cancer continues to attack the bones and the bone marrow continues to deteriorate, so my need for platelets, white cells, red cells, etc will continue. We keep checking every week.
I thank all my friends for caring and for inspiring me. And special thanks to my Royal Blood-Brothers and Sisters who volunteered to give blood in my name at the blood drive at my church.
Current physical: I am getting various muscle cramps, especially in my legs and hands. Use of my hands is deteriorating. Feet and lower legs are even more swollen and wooden. Lack of balance when walking remains the same. Fatigue continues to increase. Hot flashes are getting hotter and more frequent, every two to four hours; I’m taking a new medication that may reduce that.
8/29/13
I am still working on the Dying Happy site and the Self Help project and I am very happy about it.
I finished day 3 of my three-day chemotherapy run today. The blood levels all came up enough that we felt it was safe.
Cancer continues to attack the bones and the bone marrow continues to deteriorate, so my need for platelets, white cells, red cells, etc will continue. We keep checking every week. Meanwhile, I am experiencing somewhat decent days.
The blood drive at my church was very successful.
I thank all my friends for caring and for inspiring me.
For those of you not in my cancer support group click here for a brief history.
8/19/13
Today’s blood test showed that my platelets numbers are gradually coming up but if they don’t come up enough by next week I will not be able to get my chemotherapy at that time. My white blood cells numbers are also low and they gave me a shot to improve that but that also has to come up for me to get my next treatment.
I’m not really feeling bad, but my blood situation remains touch and go. I won’t have the PSA report for a few days and I am hoping it will remain somewhat level.
Thanks again for caring.
8/18/13
When they told me that my PSA had come down from 1147 to 711 it sounded too good to be true. Really. Based on my previous experience of PSA changes it just didn't make sense.
This weeks PSA number seems a lot more realistic. It is 976. If we disregard the 711 number it seems to fit more into what one might expect.
From 1147 to 976 implies stability* and killing cancer to some degree. It's a good sign, but I think we can seriously disregard the 711 number.
My platelets are what the nurse called "the bottom of the curve" and are expected to come up naturally, until my next chemotherapy treatment. The hemoglobin, on the other hand, was not adequate or satisfactory or anything else and I had to get another blood transfusion yesterday (Friday).
Meanwhile, I am experiencing somewhat decent days. Thanks for caring.
Joe
*not going higher
8/8/13:
I am recovering from my chemotherapy and have entered what Karen calls a honeymoon period, a temporary stabilization of the cancer, the PSA having come down some and maintaining a stable state. It gives me even more time to think and learn. See “You Can’t Take It With You”. See “Emptiness Recognition”.
7/30/13:
I have recovered from the ordeal of this past week. I am feeling strong and will resume my chemotherapy tomorrow.
7/26/13:
Ureter stent replacements that was supposed to be an outpatient procedure on Tuesday went bad and kept me in the hospital for two extra days.
Flushing out blood clots was excruciatingly painful, and it went on for hours and hours (literally). I continued bleeding internally and providing clots as fast as the doctor could pull them.
As of this morning, Friday, it appears that the bleeding has stopped and I am now drinking four gallons of water per day (not literally) in order to try to keep it that way.
If experience is the purpose of life, which I believe it is, I have just had one of the best.
Anyway, I am gradually recovering and hope to be in good enough shape to continue my chemotherapy next week.
Joe
