Brief Update: 11/20

Hello, HW PC Friends and Brothers,

Time keeps eluding me, one day drifts into the next, weeks and months go by, usually a blur to me.

Good news, as expected, the VA's Hep C test came back negative. Despite my wife having had a serious bout of it some 11-12 years ago, and the VA said that all Viet-Nam vets are much higher risk in general.

Bad news, still getting a lot of raw red blood entering my Urostomy bag. Sometimes, several days in a row. Based on fairly recent contrasted CT scans, X-rays, and special blood work, no reason can be found. Has my LT urologist stumped. He said I had an unremarkable kidney stone (5.5 MM) located in a remarkable place, some fleshy part of my right kidney, not where stones are usually located. If bleeding continues or worsens, they may attempt to remove, re-scan that area, or try to do a biopsy, to make sure the "stone" isn't a hidden tumor. As usually, they are blaming the matter on latent radiation damage. The normal suspect.

Bad news, been confirmed, my PSA has literally doubled from an already high 2-digit to the left of the period to an even higher 2 digit number in 3 months time. The largest movement over the past 3 years. I see my oncologist December 10th, he said we will have a talk and perhaps a strategy meeting, to discuss, what if anything, should be done in regards to it.

Despite my recent abdominal operation, still having total lack of appetite, will gain 2-3 lbs. (mostly due to my intense sugar cravings), only to lose it again in 24 hours. Endless battle. Most times when I do eat anything, even "good" food, I am still having intense and painful stomach cramps. Yet 2 GI doctors and my VA PCP say that nothing is wrong. Go figure that one out.

On the fun side, recently purchased a fun car, somewhat a project car but in excellent shape. A 1984 Alfa Romeo Veloce Spider. I will be only the 4th confirmed owner from new. And I am finally getting a small stand alone garage on my property. Both for the car, and to move my limited workshop out of my basement. Kind of will be my "man cave", though I hate that expression.

This past weekend, we winterized our perm. RV property for the season, as we are starting now to have more evenings at or below the freezing mark. Pretty well finished building up that property. We have a nice open deck, a large perm. screen house/building, a decent shed, and most recently had a large RV metal awning that covers the entire travel trailer. Kind of view it as a second home or retreat property. It beats having to haul the trailer from place to place. We own two adjoining lots at a large RV resort type place, about 40 miles from where we live.

I will try to check in more often when I can. Doing the best I can do each day.

Thanks for this post, Purgatory. Sorry to hear the PCa news isn't good, but good to hear how you're carrying on with life. Best to you.
Wilderness

David –

Sometimes when you haven't posted for a while I, as I am sure the others here do, become somewhat concerned about your situation.

However, when those times have happened, I have always remained confident that, in reality, you were just using your time to do the sorts of things that you have been telling us about: ambitious activities that are good uses of your time and result in useful products. Then if there's time, you post here when you can.

In short, you soldier on, as you have done so well in the past, in spite of the health challenges that you face.

Admirable. And while your physical conditions change, often not for the better, your will and determination to last it out remain ever steadfast.

Admirable. A model for us all..

Still praying for you.

Andrew

One reason I post less, is I am convinced after 7 years plus, my stories are old, everyone has heard them and some are sick to death hearing about my twisted journey. I know I am. I have learned in r/l, to hate the question, "How are you doing?" or "How are you feeling?" It's getting easier all the time for me, to simply lie, and say, "Fine", and let it go at that.

Most people say that to be polite, but in reality really don't want to know the answer, unless its a good positive answer. I have learned this the hard way. And many people honestly do not understand or comprehend those with long term over even perm. chronic situation. I have been told, "I don't see how you could be hurting that bad after all these years". Honestly. How do I answer that? How do you prove that? If the same person could transfer inside my body (or anyone with severe chronic pain), my gut feeling is that they wouldn't last 15 minutes, perhaps an hour if they were tough, let alone for weeks, months and years. Especially if they knew, that they were never, ever going to get better. It's a tough reality to really get a grasp upon. Not complaining, just stating facts.

What I am doing, is to still try to enjoy my life, pursing the things that interest me, enjoying my immediate family, to the best of my abilities. Like a normal person, like a well person. I for one, took my health for granite for decades, huge, huge mistake.

My newest daughter in law was recently dx. with the worse possible level of Chrohn's, to where she needs constant transfusions, etc. Only been married for a year to my youngest son. She just recently had to drop out of college, can no longer work, probably will never be able to bear children. And she is only 26 years old. She know understands, first hand, some of what I have been dealing with. But I'm old, she's young, so to me, its very unfair situation. I made it to my late 40's before I started becoming a cancer magnet. Made it to 56 before my PC Journey began, at least I had a chance to live most of my life with reasonably decent health.

As usual, appreciate the care and concern from this community and my friends here. Means a lot to me.

Wish I had more to add, but so many more knowledgeable folks here than me, I have nothing new or update to add or offer most times. Sad to me, that there's that never ending line of new folks entering the ranks here. PC truly sucks, and so does cancer in general.

It would be easy for me to give up and just lie down. But don't fear, will never happen, just not in my DNA makeup. I will keep living, keep fighting, keep trying to hold my head up, until my body no longer allows me to. As I joked for years, I keep getting knocked down to the floor, I'm just to stupid to keep getting back up.

Purg:

That was a very perceptive, deep post.

I think many of us get tired of the first thing out of family/friends mouths: That concerned look and the question "How are you?" I HATE that being the first thought when someone sees you. It means you are standing out as "the sick one."

This doesn't happen that often to me, but often enough that it is irritating. How are we doing? For most of us fighting "only" PC, the answer is that we are only as good as out last test. But who really wants to get into that.

I did have a long talk with my friend who has esophageal cancer. In a way, his results are both excellent but bad. His was found, apparently, in the earliest of stages. That's good as it means he has a good chance of beating this thing. It's bad because "good chance" means about 50% and he is about to undergo radiation and chemo. At the moment, he is unable to swallow (from the cancer -- I imagine the upcoming radiation could make things even worse before they get better. Some good news, heh?

Anyway, I pointed out to my friend that he will just have to adjust to a new reality. His life will just not be the same anymore.

Mel

Bohemond said...
Thanks for sharing the update. Sorry the medical news isn't better. But the car and the new garage sound like well-earned treats. A guy I worked with, who is now also retired, has poured his time and money into a 1950s vintage MG for as long as I've known him.

I envy you your new garage. My man cave is a small shop in my cellar where I build guitars and ukuleles. I'd love to have a bigger shop --moreover a shop that is above ground with large windows. In my fantasy shop I'd have room for second band saw so I wouldn't have to keep changing blades, plus a thickness planer, and a separate dust room with vacuum system and and a dust-free room. Such stuff dreams are made of.

Jim

My space/workshop the past 10 years is a small back room in my basement with a door to the outside. Has low ceilings, about 6 1/2', and is perhaps 5 feet wide and 8 feet long at best. To do anything, I have to take about tools and such and go up a step to the outside and set up what I am doing outside. Having this free standing garage is like a miracle to me. Kind of an early Christmas present. My wife gladly agreed to it, without me having to sell my soul to the devil. We will use the old space as a general storage area for all the junk that we don't know what to do with currently.

Great news about doing things to redirect your focus. I'm about two weeks into rt and past 30 days of Casodex and the first three months on a 2 year stretch of Lupron . It has been a wild ride as I think Andrew said it would be, but buying a 20' Harris pontoon boat has really changed my perspective on life. We have been out 5 times now with family. Of course I can't leave well enough alone and am rigging it up for fishing as much as cruising. I know I can't escape a 5-4 G9 dx. At least with my floating patio it's not just about me now. That is a great feeling to me.

Rio: your pontoon boat sounds like fun. After owning 5 sailboats, I got out of boating a few years ago. If I could afford to keep a boat on the water, i.e. dock space or lake front property, would still have one. But I can no longer handle the process of hauling boats in and out of the lakes, waiting in long lines at the landings, etc. Traded that life for the perm. RV place we have invested into. Now I don't even have to hook up and haul travel trailers anymore. Hope you do well in your HT. I have been fortunate to avoid that path the past few years, but with a huge doubling recently on my PSA, not sure how long this will last. See my oncologist early in December. We will talk.

Getter: Thanks for the kind words, and with me, the "P" word is both ok and appropriate in conversing with me. Can't have enough "p's". Yes, my wife of nearly 42 years is the single greatest blessing in my life. We have always maintained a "best friend" first relationship, I think that is what makes the difference. Our common grounds far out weigh our differences, and we thrive to always respect one another, even when on opposing sides of an issue. We both hate to argue, fight, or raise our voices. I work mostly on logic, she works mostly on emotion, so together, it usually balances right in the middle, it takes both aspects in my opinion for a happy union.

If something ever happen to her, I know already, I would never re-marry. No way I could ever start all over again in that process, and her presence would taint a new person in my mind, which wouldn't be fair to that person.
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Update:

Today, spent most of the day picking up my Alfa. I already had a truck borrowed, and the U-Haul auto trailer rented the afternoon before. Had to drive to G-ville to pick up my youngest son to help me. His wife had a 2-hour plus medical treatment, so we had to hustle. On the other end, the seller had 2 of his friends waiting to help. 4 guys easily pushed the 2.400 lb. car right up and on the trailer. We never had to use the winch thing I bought, its still unopened in the box. Plus, they knew how to strap and chain the car in place. Was a slow 17 miles home My son, my wife, and I were able to get the car off fairly easy, minus a few technical problems with the hitch, etc. At least we had gravity in our favor. Car was delivered without a scratch and no damage.

Then I had to drive my son back to get his car/wife. Then I had to come home, take the truck and trailer back to U-Haul. The person was so hateful. I was alone, and he offered me zero help, trying to back the trailer into a very tight space between other rentals. He wouldn't even offer me verbal assistance, said it wasn't his job. Told him I was physically shot, that I wasn't good at backing up tandem axle trailers, and the truck I had borrowed (1998 Full size Ford Conversion van) literally had no rear visibility. I had no reference to where the trailer was backing up. Took me over 30 minutes of back and forth, jumping in and out, etc. to finally get it right. And in this narrow unleveled lot, there were deep unmarked ditches on 2 sides. All he said to me, was "that don't you dare think you can just unhitch it there and leave it in the middle of the lot". Yeah, great help. I was near passing out at this point from exhaustion and pain, but he didn't care. May report him to U-Haul National, but I doubt they would do anything.

Finally got home, and I literally took pain meds, and crashed for nearly 3 hours. It was living hell, but at least I got the car home safely. about 10 minutes after I put my new car cover on it, it started raining even though there was zero chance of rain, lol. Talk about close timing.

That's the kind of physical pushing I have got to stop doing. When I went inside, emptied my bag, and after nearly 5 hours total time, there was like maybe 3-4 ounces of fluid, and most of that was pure blood, so I must have gotten dehydrated without realizing it, despite being a cool and cloudy day.

Geeter: What is dumb, U-Haul refuses to rent a trailer to me with my wife's 2003 Ford Sport Trac Pickup truck. It's rated to tow 5,500 lbs. I have pulled 4,500 lb. travel trailers with it. They claim there was an accident years ago with one, fatalities, and will not rent to anyone using one. That is why I had to borrow a friends huge Ford conversion van with zero rear vision, with almost 200k miles on it and the sloppiest steering I have ever felt, but that was ok by U Haul standards. What a crock.

Rio: Feel bad that you are a 5+4 PC guy. On a good note, my LT oncologist told me years back, that despite the severity of Gleason 8/9, they often respond well to advanced treatments. He told me, that Gleason 7 cases like mine (and others) can be very unpredictable and non-responsive to multiple treatments, such as been my PC journey. It has never reacted well to any treatment thus far.

On the car, spent a couple of hours detailing inside and out. Took a while and 3 doses of WD40 on the roof frame to get it to go down, but once those old joints were loosened, it worked like a champ. One person can open and fold the roof without getting out of the drivers seat. Being the deluxe version, this Alfa has real leather bucket seats and door panels (dark tan), power mirrors and electric windows, solid mahogany steering wheel and matching shift knob. Only offered as a 5-speed manual, no power steering, but has 4 wheel Brembo disc brakes, and real "Campy" alloy rims, 5 of them, including the matching spare. Today, I found the original jack (a rare find) and a complete set of the Alfa tools - in the red leather Alfa tool bag. All hard to find on one this old. BTW, the roof is cloth, not canvas or vinyl, very well made and the original also. The previous owner was restoring the gas tank, so its out of the car, I just have to finish it off, he gave me all the supplies and instructions. Once I do all the normal maintenance items that a sitting car needs - should be ready to go. And he gave me all the NOS OEM parts to do it. Plugs, plug wires, distributor cap, oil and fuel filters, air filter, etc.

Meant to be a project car, so if it takes me a few months (winter is nearly here), so be it. We have 3 other vehicles and just the 2 of us. Nice car to go for a Sunday drive out to the forest, lakes, and mountains here with a picnic basket. British driving cap (or should I say Italian), driving gloves, and my wife wearing a long scarf. That kind of car.