Been a frustrating time of late, seems to be taking forever to get any new answers to any of my issues.
Did get my oncologist to move up my appointment by 3 weeks, I see him next Wednesday. As usual, I will e-mail him my current list of questions and concerns a couple of days in advance. It saves us both some time during the visit.
He may or may not want to do another PSA test. Doesn't matter to me one way or the other at this point. I take the same position as Sonny at this juncture in my journey. A little curious of how much it has jumped from the previous reading of 40.x, but regardless, isn't going to change anything.
Pain is still my worse enemy. Who knows what's really going on with the PC at this point, but it isn't what is directly causing even more increasing areas and levels of pain. It was brought to my attention to investigate CRPS. I had never heard of it before, it stands for Complex Regional Pain Syndrome. Many of the symptoms are exactly what I have been dealing with for nearly 3 years now. It would explain why more and more areas of my body are wracked with pain around the clock, and why its never getting any better. It's not easy to diagnose, and it can even be harder to treat. Worth talking to my doctor about it. He's under the impression that it is severe nerve damage caused by the ill-fated SRT, but even he is puzzled that it continues to worsen and spread over time.
Had a really bad spell this past Saturday. My wife and I did some local shopping, nothing unusual there. After walking through 3 major stores, I drifted into some of the worse pain ever. Everything hurt from the waist down, including both hips, both legs down to and including my ankles, and all of my back from about 3" below my shoulder blades. We had to abort the trip and come home. By the time I got in the house, was so severely fatigued, that I could barely walk or even lift my arms. It was time for some pain meds, so I took them, and literally spent the rest of the day in bed. Even lying down, the pain was intense. And earlier that morning, I had put on a new Fentanyl patch as scheduled.
The combined meds did nothing for that pain episode, and I took 3 Advils to boot, to try to help. Hardly slept Saturday night, perhaps 2-3 hours of broken sleep. Woke up Sunday with most of the extra pain gone, and Sunday was what I call a "regular" pain day. This type of pain is hard to describe, its like a combination of hitting a raw nerve, as in a bad tooth ache, but picture it covering that much of your body, and a deep gnawing feeling deep in the bones (or so it seems), the way an ear ache or bad tooth would feel. It was hard to find any comfortable position to ease it, other then lying in a fetal position on the bed.
It finally got the best of me, and this is a rare thing, but it actually brought me to tears, and I broke down and had a good cry. Told my wife, in the moment of the worse of it, that I don't understand why I am having to suffer so much. Takes a lot to get me to tear up for any reason, but that level of hurt for that long a period was just too much. I can't be strong and brave 100% of the time, its not possible when one is hurting that much.
My doctor is going to have to do something else, change the meds, increase them, etc. I want to see if I can push him for the PET scan that was scrubbed late last year. It's always possible that perhaps there are some mets hidden away causing some of the extra pain.
Also, still no final answer on the increasing bladder spasms and pain. Still getting worse. For you guys that experienced a handful during the short time you were on a cath post surgery, can't imagine what its been like going through dozens of them a day. I estimate since my PC journey began, I have had over 5,000 of them, if not more. And since my bladder isn't even connected anymore, and according to scans, is in a deflated position, it makes no sense that I am having them at all. I actually timed a bad one the other day, that brought me to my knees literally, it last 4 minutes before it let up.
I am at an impasse with the specialist in Charleston. The ball is back in his court, and I haven't heard anything in weeks. He now has had all my CAT and MRI scans to look at for weeks, was suppose to get back to me. I think they were ticked because I cancelled an appointment with a neurologist also in Charleston. Can't seem to get them to understand, that I can't easily make the 225 mile each way trip on the drop of a hat. If they want me to see a neuro doctor, then set me up with one in my area. An hour or so in the car is all it takes to make my back flair up in pain, and it takes 3 1/2 hours of fast driving to get there. Can't do it alone, and its not easy for my wife as a nurse to keep taking time off, and since I can't go there and come back in a day, it means we have to spend at least a night there. I want to discuss the findings of the specialist with my own doctor before making any further commitment to that process.
That bladder removal surgery, with all my radiation damage, is a high risk and dangerous solution to an already complicated situation. Especially when the surgeon emphasized that it could make things even worse, or not work at all. Beginning to think the negatives far exceed the potential good.
Meanwhile, I still have no natural appetite. I have stopped the rapid weight loss, but that's only because in my current frame of mind, I have resorted back to being a sugar junkie late at night. Yeah, I know that's not a healthy way to keep on weight, but it works, and hey, chocolate makes me feel better. My weight is staying pretty steady right now on this plan, not really gaining or losing like I was before. But still no official answer or solution seems close at hands.
Hoping to get some new answers next week, perhaps a new sense of direction or game plan. I still feel like I am slowly shutting down, week by week, losing even more energy, and finding it harder to get anything done in my life. I am thankful when I read of many of you here, that have PC, get treated, and are able to move on with your lives, I only wish I could get some kind of break from this low QOL I am locked into. Not much to look forward to anymore, other than simply existing.
That's about it, hope at some point to have something more positive to report. I know that many of you are sick of hearing about this stuff, but trust me, I am sick of living this way. It's no fun to be awake 19-20 hours a day, and spend most of it in pain. If I am a bit testy or short sometimes, forgive me, just tell yourself its the pain that is talking. I wish no one any ill feelings. I am doing the best I can on these very trying circumstances.
I am still thrilled with every success story I read here, every great PSA report, etc. PC is a terrible thing in general, but it thrills me when I read of a good report from one of the guys.
David in SC