August 24, 2017
For those of you who pray for me, I thought I’d update you regarding my health since my last post on this in 2016.
- I found out in June that my radical prostate surgery of August 3, 2015 did not get all the cancer. My PSA has been steadily rising. My doctor cannot give me radiation because I need 5 years to be cleared of colon cancer and if that came back, radiation would be a first priority and I can’t get radiation for both. He told me that the cancer is slow growing, I should have many years to live and if my PSA reached 4.0 (its .65 and should be .03 or so), we would start hormone treatment or radiation.
- I have had two PET scans this year and one colonoscopy. The good news is that I was found completely clear, so I will do these twice a year for two more years, then once a year for two years and if I am clear after 5 years, I will be declared in remission. The bad news is that a chemical indicator of recurrent cancer in blood work tests—CEA—should not be higher than 3.9 and my last 3 tests were 4.1, 4.3 and 5.1. There is mild concern about this, but there are false positives regarding CEA, so we will continue to monitor it every three months when I go to the cancer center to have my port flushed.
- For some odd and unknown reason, starting 4 months ago, my liver enzyme readings are 2 ½ times higher than normal. So they did an ultrasound on my liver and found nothing. At this point, I get blood work and see the specialist every 2-3 months. We are trying different things to see if anything works, but at this point, it’s a mystery.
- You may remember that last fall, I had to stop chemo for 5 weeks to have an operation on a lesion on my arm. Believe it or not, the lesion was a very, very rare skin cancer than none of my doctors or the local labs had ever heard of (my dermatologist and plastic surgeon have been in practice 30 years and had to look it up on the internet). It is called a sebaceous carcinoma rooted in Muir Tore syndrome. Only about 2000 Americans have this, and 98% of those who do have the cancer appear around the eyes. I am one of only 125 cases in the US who have it appear on my body. I had the cancer removed through surgery last fall, I have about a 7 inch scar on my left arm, and they removed a bunch of lymph nodes because this sort of cancer metastasizes and is life-threatening. Well, I now have one near my right nipple and it is likely there is one on my nose. Last fall they had to send my biopsy to Harvard and UCLA since no one here—including no labs—could diagnose it, and both universities came to the same conclusion stated above. I see my surgeon next week, but my doctors are trying to get approval for me to go to UC Irvine to see someone who knows what this is since my doctors don’t want me to have a full surgery every 6 months the rest of my life if I don’t need it, but they don’t want to simply cut it out when clear borders are reached since it may have metastasized. I await approval for the UC Irvine visit.
- My cardiologist told me this week that I have atrial flutter (the top of my heart beats at 200 per minute, my bottom at 100 beats per minute). My heart is very strong, but I have an electrical problem, so he is referring me to a specialist who will run a tube from groin to heart and electrically kill cells that are over-firing. If that doesn’t work, I’ll get a pacemaker.
- Due to the chemo, all 5 toes on each foot are 80% numb and tingling throughout the day. It isn’t painful, but it is distracting and keeps me from walking normally.
In spite of all this, believe it or not, I have had one of the most productive summers re writing in recent memory. And I have a lot of peace and joy. Well, I have to go. I’m taking my grandson fishing. I just thought you should know about all this.
With great warmth and appreciation,