Visit with Urologist today, about kidneys (UPDATED 4/6)

Sounds like good news, 81. My normal BP runs 125/65 typically. 130 would be high for me. Lots of bad heart disease in my immediate family tree, but so far, hasn't effected me.

Thanks, Diane, that's one scare that I can scratch off the board. Five days after the Charleston trip, I finally had a "normal" pain day. Takes me that long to get over a big physical strain like that trip Will make me think twice before doing that again.

David

I had forgotten about those stamps as well. And's it reminding me, time for me to buy another sheet of the prostate cancer stamps and do another giveaway for all the many new members we have picked up, it will be either the 3rd or 4th time, I have lost track.

The highest my BP was up to, was in the low 140's, so my PCP had me on the lowest dose of lisinopril, or how ever you spell it. Now its at a nice steady rate, feel real at ease about that part of my health.

If you are interested in exchange, I have so many extra mint UN stamps presently, I don't know what to do with them.

David

Lynn,

Could be one reason why my oncologist is not overly concerned, since he has been my pain manager for over 3 years now. Plus, I did have lots of fluff on my frame, not like I look like a human skeleton. Still averaging 1/2 to 1 lbs. per day, whether I eat once, twice, or not at all.

Probably, anything I eat makes me cramp up. Even those 6-10 oz. whatever the size is, of Ensure or Boost will cramp me, then the cramping makes my back hurt worse, its a vicious circle.

Fixed grilled out food for the wife tonight, and you think the smell alone would trigger an appetite, but not for me any more. Had she not been expecting dinner, wouldn't have bothered to have eaten at all, first food of the day for me, and had to force myself to eat a child's portion.

Not even tempted to eat junk food or my old stand-by's of lots of sugary stuff, have even lost my taste for the things I like. I stay well hydrated with endless water, my normal beverage. I know how important that is.

Yes, CP could be behind this. Only thing different about this event from the ones in 2012, and 2013, is this is lasting much longer, being like this for 3 full months with no sign of letting up.

D.

Mal, I had wondered what became of my good friend. So glad you checked in. Sorry to hear that your wife is still going through so much herself. I feel lucky this week, only a single medical appointment scheduled this Friday with my neurologist - hoping he finally has enough data to make a diagnosis.

Though I did have to make a 60 mile round trip just to pick up a pain prescription. It's not one that can be phoned or faxed to a druggist. And they fooled around too long to get it mailed to me.

Not worried about the prospect of false teeth, made it to almost age 62 years on my own teeth, and having a broken up mouth of teeth currently isn't too appealing either. So I am just going with the flow on that one. Least it won't be costing me any money to have all the extensive work they say is needed.

Still another pit fall of what happens when one undergoes radiation. The dental team says all of it is the direct result of the neck/throat radiation I had back in year 2000 for my previous non-PC cancers. It just took these years to catch up to me. He said 70 gys. was a lot of radiation transmitted in a small area, thus all the jaw bone and teeth damage.

Hope your wife gets her answers and solutions. Glad you are there for her. Don't be a stranger.

David

Thanks for checking back, Loretta. Was thinking about you, and all your ordeals. I fully understand on the fatigue part. Severe Chronic Fatigue is another one of those hard things to explain to people that don't have it. They often fail to understand the difference between normal tiredness, and true chronic fatigue. They don't understand why sleep doesn't often help relieve the symptoms. I can wake up (not that I ever get much undisturbed sleep) and be just as achy tired, if not worse, then if I hadn't slept.

It's hard to explain the "wall" that most CFS people experience. Invisible of course, but very real. I hit mine between 3 PM and 4 PM every single day, as regular as clockwork. Once it hits, its like being a lithium battery, you know, the kind that doesn't slow discharge, they simply stop working when empty of charge. Same with me. Can be fine one second, than blam, I am through, I am toast for the day, and all the resting in the world is incapable of charging me back up for the rest of that day.

Hope you feel better.

I am off to see the neurologist Friday afternoon, to see what and if he found out anything from the last round of electrical and blood tests I had taken with him.

At PT today, I was barely functional, took all I could muster to get through a 45 minute session, that most would find simple and easy. My therapist said my legs were becoming more and more like jelly with each passing village. I managed to fall to the right today while we were walking, but fortunately she reached up just in time to catch me. And that was walking with a "walker".

She was shocked at how much weight I had lost just in the past 3 weeks.

David

Pat,

Your words always touch me in particular. My heart still goes out to you, as its been less than a month since Mark lost his battle in the flesh, but gained victory in faith, and no longer suffers in this world. Sure you have so many wonderful memories to hold onto.

My wife is slowly breaking down after watching what I have gone through the past 5 plus years. As a nurse, she sees those suffering and dying on a daily basis. She sees what it does to family members. While she's a tough bird at work, she has to come home and see and deal with what I suffer through, and she's frustrated, because she knows there is nothing she can physically do to make me feel better.

Of course, her being there for me is more than enough to keep my going. But when she witnesses me in the midst of a major pain episode (like yesterday and today ongoing), she just doesn't know what to say or what to do. It's hard to ignore what she witnesses and hears. And trust me, I don't tell her half of what I am feeling.

But being married to someone for 40 years (will be this Sunday, April 6), you can't hide much from one another. She can tell from my eyes alone, if I am fighting deep pain.

I feel the fight is slowly being zapped out of me as well. There's only so much "tough guy" stuff a guy can pull off. There are many times I am close to screaming, or simply crying, but I refuse to give in, to the best of my ability. If there was only some glimmer of hope, that I might get better, or even if I believed I could get better, it would help. But it does not seem to be the case.

For men that do lose the good battle with PC, the physical suffering part is generally short lived, toward the end, and its great that is commonly the case. I am coming quickly up on the 4 year mark of dealing with serious level chronic pain. One can only take so much. It will get to the best of one's spirit.

If it weren't for the love of my wife and family, and for my rock hard faith, I would have called it quits a long time ago. Though the thought of suffering like this for "x" amount of time, or even years ahead, is almost more than I can bare most days.

It's unlikely that I will even be able to attend my youngest son's wedding in San Francisco later this year. There is no way I could physically handle a 12-16 hour travel day. Even with flying, there are endless layovers on a flight that long, plus being confined to one narrow seat for hours, and not being able to lay down and nap when needed, as of now, it's impossible for me to consider.

My last car trip to Charleston to see my daughter was way too much for me. It took 4 hours in a car, and by the time you add up all the walking and standing I had to do while there, and then turn around and do another 4 hour trip, it took me nearly a full week to get back to "normal". And trust me, "normal" is bad enough. I may not make the trip again this year, just the thought of it bothers me.

Today I am paying for what I did yesterday. My crime: I mowed the yard for the first time since winter. And yes, using a yard tractor, but even that pounds the fool out of my back and joints. Then I had to carry a 20 lb. pound propane tank up a flight of stairs, and carry another full one back down the steps (long story). It's easy to say, oh, you shouldn't do stuff like that. But I don't have easily available help handy to help me with the hard parts. It's mind over body with me most days, and I am strong willed, and force my body to keep doing things I shouldn't.

So today, I am with severe back, legs, hip, and feet pain. But at least the yard is mowed.

My mind still thinks I am ok, thinks I am physically strong and able, but my body betrays me every day of my life.

Meanwhile, I keep losing rapid weight, and still puzzled why not a single doctor of mine shows any serious concern. I have lost 4.5 lbs. just the past 3 days alone, and yet I am eating. That's over a pound of day. Have now lost over 32 lbs. since the first of January. If anything, the loss is picking up speed, as I ate 3 meals yesterday and still lost 1.5 lbs. over night.

David

Staying properly hydrated, I am constantly thirsty, so constantly drinking water. I eat when I feel hungry, which is seldom, but eat at least one full meal a day, and most days, supplementing on Boost.

Tried to get my oncologist to consider upping either of my pain meds or both, to cover the ever growing realm of pain, but he didn't want to, at least at my last meeting. It's been many months since there was last an increase.

I see the neurologist in the morning, I will see if he has any wisdom on the weight loss.

But 4.5 lbs in 3 days, with me eating? Doesn't even seem possible. Have lost 3 pants sizes just in the past 30 days. I am now within 2 pant sizes of what I wore when I was 21 years old when I got married, haven't weighed this little since I was around 32 years old, or younger.

But, I don't feel weak, or dizzy (most times). And I never feel hungry nor am I crave anything. Gave up all sweets for Lent, thought that would bother me, but I never even think about my former love of sweets and chocolate. Though I do get a little chocolate fix in the Boost or Ensure drinks. I either drink the chocolate ones or the creamy strawberry flavored ones.

Only thing that concerns me about the weight loss, if I suddenly have another major medical incident, i.e. a surgery, I will no longer have any cushion to fall back on during recovery. When I had the Urostomy surgery in 2010, I lost 35 lbs quickly during recovery stage. But in that case, once I started feeling better, appetite picked up, and I gained it all back and then some.

It is what it is. For those that preach, that if you lose a bunch of weight, it makes it easier on your joints, I find that not true for me. None of this weight loss has any effect on the level or duration of the pain I suffer daily. Makes no difference so far, nor on my chronic fatigue.

D.

I see you post only looking for mistakes. Very becoming of you.

He agreed, reluctantly to change. He wrote the script wrong. CVS said they couldn't fill it for 30 days at the higher level. The way he wrote it, they would only fill it for 40 days, which wouldn't have proved anything. So I mailed the script back to the doctor, and told him to forget it, since he wasn't eager to change it, but only did so at my insistence. I didn't feel comfortable, so I will do without the additional pills for now. I am more interested in keeping him as my oncologist long term. Not going to mess up relationship over differing opinions on the pain pills.

Satisfied now?

D.

David, just wanted to wish you and Peg a very Happy Anniversary for Sunday. Have a lovely day together. Thinking of you as always.

Jane xx

Sorry for the crappy day. Hope your weekend is at least a bit better.

David
Sorry to hear about the disastrous visit. My rule is if I have to wait more than 25 minutes in the exam room I leave, unless they tell me what is going on and is believable. Reading what you had to go through all for nothing makes me po'd.

If you get the nasty nurse again, ask her why she even went into nursing if she can't handle basic people skills.

Hey, if you decide to go to your son's wedding, let me know, I'm in the bay area.