Posted 12/3/2015 8:59 PM (GMT -7)
Hello one and all, time for another update, only wish there were something good to report.
Met with my LT PCP today, been seeing him since the end of 1993, so 22 years. Haven't seen him since early July.
The new growth on my scalp getting out of hand. If you remember, a dermatologist cut the other one off earlier in the year, and pathology supposedly came back clean. However, a new area, longer, and to the left of the former site, is getting bigger. Sometimes, it oozes clear sticky fluid, at other times, it bleeds, and sometimes - its doing both. This dr. is well versed with my Porocarcinoma events, and is concerned greatly for me. He's sending me to a higher level dermatologist, one with experience with ultra rare cancers. Waiting for appointment. He's afraid the other pathologist may have missed something.
As far as the bleeding from my kidney's, he thinks its time to move away from my LT urologist, and he is having me see a kidney specialist (forgot what they call those). He said its unacceptable for my urologist to simply say "I will see you in 6 months, probably just radiation damage". Said something has to be causing the bleeding, Said there were all kinds of weird kidney issues the urologist may be missing Said if the kidney specialist can't find a cause, I should at least consider seeing a new urologist with a different practice to get a good second opinion.
What I thought was a spider bite near my navel, which doesn't want to heal, keeps pussing up and bleeding, turns out to be stitch trying to work its way out of me. He sending me back to the GI surgeon who did my big surgery in October. He listened to the left side of my abdomen, and said something was still not right, as I am getting increasingly stronger acute stabbing pains below my ribs on the left side. Was near the point of tears a couple of nights ago, close to going to the ER. After 2 hours, the pain finally let up. But it came back earlier this evening with a vengeance.
I see my oncologist next week, got a long list to go over with him. With my PSA doubling (we are talking double digit whole numbers) and the pain in my right hip getting worse, its at least time to do a major bone scan again. Been a while.
Hate to be complaining, but been living this life of severe chronic pain now since July of 2010, nearly 5 1/2 years, and to be blunt, I have emotionally and physically taking about all I can take. Not sure how much more I can endure with all of this. Nothing every improves or gets better, only worse over time.
Most men dealing with end day cancer pain, fortunately, is short lived, and they are pumped up with morphine to ease their suffering, and then they die eventually. This is truly a never ending purgatory, from the moment my eyes open, I am reminded of the pain. The only thing that makes one day different from the next, is the degree and scope of the pain on a given day. And that's a very random thing, no way to predict until I have been up for a while.
When I do sleep, I am consumed most times by nightmares, so you don't even get a break then. Got to be a better reason to live than living like this. If only I could see any hope of an improvement in my QOL, I could see hope ahead. But I don't. Finally starting to resign myself to the cruelty of my situation.
Right now, pain and anxiety is gotten a hold on me, so don't mind me. As much a vent as anything else. Being here alone at home on a night like this doesn't help my frame of thinking either.
I do find satisfaction here at HW PC, when I read of good news stories. I am always thankful to read of men that are winning their battles, or at least holding the beast at bay. Never jealous, always happy to read those kinds of stories.