Just back from Emergency Room a couple of hours ago

Thank you, Mau.

Sorry to hear someone as young as your granddaughter dealing with that. Glad to know the Miralex works so well.

The ER doctor strongly endorsed it. As of this evening, will be taking one dose, plus the 2 stool softeners I already was taking, in a nightly basis, whether I need it or not.

Still feeling a lot of pain and pressure down there, makes me kind of gun shy about wanting to go, because I know in advance it will hurt. I tend to feel traumatized easily these days, just been through so much back to back, never get back to "normal", always some crisis going on with my body. But doing the best a person can do under the circumstances.

My best to you,

David

Purgatory,

You surely have many trials, and the way you weather each storm is an inspiration.

take care!
.

David
If I wrote what I want too this reply, then the censoring software would probably make it look something like this

"*** ****** ******* ******* ** *******!"

Instead, I will just say that I am yet again amazed at how you still manage to find yet another ounce of inner strength when something like this barges into your life.

And
MVP = your ex boss!

It reckon that your botched RT must have ruined your bowels too so that the lining was damaged and won't absorb nutrients and the muscles are damaged and can't move stuff along from top to bottom.

If nothing else I hope you at least get some rest.

Alf

Hi David,
really sorry you had to go trought this nightmare - hope you will have peacefull time with your wife.
L.

David, real sorry to hear about all of this BS, so to speak. Miralax, eh? Over the counter?

yes, doctor said to stick to the 2 stool softeners a day I have been using (OTC) and to use Miralax daily at night. Claims it's tasteless but they lie, I have tried to hide it in Diet Ginger Ale and Diet 7 UP, but can taste this funk regardless. Not totally gross, and if keeps me from what I just went through, I will gladly drink it.

thanks chart, the drive to airport is past tense, you must have missed that part above. Ex-boss fully expected to do it, but I felt well enough at 9 PM last night to make the trip. 3 hours before, I was laying down in bed as miserable in pain as I could be, and was surprised that I suddenly felt well enough to go. However, once at the airport, the pain returned, and I wished I hadn't made the attempt. But it all ended well, she was so glad to be home though she had a wonderful trip.

In summary, she said our son's wedding was like a story book wedding (very wealthy in-laws), the my oldest son and his family spent the rest of the week with her, they spent a day in San Francisco playing tourist, visited Muir's Woods (she had wanted to see the Redwood trees all her life), went to the beach (she had never seen the Pacific before). The next day, they drove up to Lake Tahoe, and had a picnic at some famous vineyard (don't remember the name).

This was the trip I had always wanted to take her on for the past 40 years, as a delayed honeymoon we never had. Sorry I was too ill in health to make the trip, but grateful that she had the chance to do it on my behalf. With the problems I had anyway, and the blockage disaster I just went through, I simply would have ruined the trip for her had I gone, so in a weird way, it worked better for the rest of the family.

good advice, my wife said where she works, they always mix it for the patients with either grape juice or apple juice to hide it, and for some, with prune juice. I tried prune juice this weekend, but cold, and warmed up, and can't stand the taste, so I may try it tomorrow with apple juice or apple cider.

Anything buttery or margarine or greasy tasting has always made me ill. Same with salad dressings, I haven eaten "dry" salads most of my life, and plain sandwiches (no mustard, mayo, etc.).

I love sugar, been trying to control the sugar monster in me, and so has my oncologist. I don't drink much soda, average a can a day, or less, and have only drank diet sodas for at least the past 25 years.

So not doing the "no butter" or the "sugar free" thing to gain or lose weight. For example, I would never eat sugar free candy, or ultra low fat products, whatever they put in those products make me ill.

Yes, all I did was provide the funding for the wedding, I didn't get to go, see, or enjoy any of it. All I have seen is some photos. My oldest son made sure my wife had a wonderful Northern CA trip after the wedding, the trip I had wanted to take her on. Not quite the same thing, but still glad she got to see all the stuff I wanted to show her.

Not counting the cross country air travel, which btw, took them from airport in Greenville to hotel in CA, over 12 hours to accomplish each way, they put 1,200 miles on a rental car during that week. There is no physical way I could have ever endured all that, not counting the recent surgery or the recent ER incident. I still have about a 4-6 hour max. window of endurance each day, period.

I would have been the spoiler on the trip. And with no teeth and very sore gums still, couldn't have enjoyed any of the 950 buck rehearsal dinner I paid for, or the reception, or all the good CA eating they did everywhere they went. I would have needed constant rest breaks, and nap time, just would not have worked out.

So as much as it grieved me, and didn't make me real popular on some fronts, I know I made the right decision not to go. I could have ruined things for the happy couple. They will return from Hawaii next Wednesday I understand. Everyone said it was like a story book wedding, so I am glad they got to enjoy their special moment (that's where his wealthy new in-laws came in handy, lol).

Wasn't cheap for us either, and we were only dealing with the "grooms" side of course, and still spent money than for my own daughter's entire wedding and my oldest son's wedding put together, and still, the "other side" thought at times we were being cheap. Too bad money had to be behind all that.

We are not pretentious people in our family, and we made our mind up, that we were not going into debt one cent for the wedding, and we didn't. God knows how much her parents sunk into this event, but that's their choice and decision and their dime. We did the best we could. Just glad its over with, and hope and pray they have a long and happy marriage, that's what counts the most to me.

David,

I hope things will begin to turn around for you in the near future. You certainly have extraordinary endurance and the patience of Job. One of the side benefits of your hyperbaric oxygen therapy is that it is known to improve chronic radiation induced enteritis by encouraging angiogenesis in the tissue of the small bowels just as it does for the tissues of your jaw. Medical studies have proven it to stimulate new blood vessel formation in radiation damaged small bowels.

Bennett M., Feldmeier J., Hampson N., Smee R., Milross C. (2012) Hyperbaric oxygen therapy for late radiation tissue injury. Cochrane Database Syst Rev 5: CD005005. [PubMed] [Ref list]

This may slowly lead to better absorption of nutrients and an improvement in food tolerance for you. Through trial and error over the last year you have learned which foods are the most irritating for you and which are more tolerable. Hopefully you can slowly add more foods to the tolerable side as your small bowel continues to benefit from the hyperbaric oxygen treatment you have completed.

Joe

www.ncbi.nlm.nih.gov/pmc/articles/PMC3871275/#!po=52.8571

Sunday Evening Update
+++++++++++++++

Nothing really has changed. Went to church this morning, there was a reception after, and in the midst of that, I started getting very chilled to the bone and shaking as well as a lot of weakness. Went home, shaking all over, but no fever. Laid down on the couch and turned on a football game, under a thick blanket. Next thing I know, I must have passed right out asleep and didn't wake up till 2 hours later.
Kind of didn't make sense. Wasn't tired, had slept quite a bit last night, and no explanation for the shakes.

Spent the afternoon detailing our cars (more therapeutic than needed, as often as I clean our cars), and then just took it easy rest of the day.

Did some "forced" eating this weekend, wished I hadn't, because it always backfires on me, and it did this time. So back to my "regular" limited eating starting tomorrow. It's really become difficult for us to eat out anywhere, because my eatable choices minus all teeth and having sore gums is extremely limited. Sometimes, its all but impossible to find anything on a menu that I either could eat, or would eat.

Got a busy week ahead, with resuming PT again (hadn't made it back since the surgery), and some needed but limited consulting work for my ex-boss (I owe him big time). Need to find out where I stand with my other doctors. Still nothing resolved. My regular PCP has left me hanging high and dry, the VA never got back to me with either a follow-up appointment with the VA PCP about the weight loss, nor the appointment with the new PCP they assigned that isn't even until December. And the VA's follow-up with my dental surgery got screwed up (by them, not on my end). So I have no idea when I am suppose to go back to be checked in Columbia. Sounds like a lot of long and aggravating time ahead on the phone.

Thank you, Chart. This is why the VA oral surgeon wants to wait 3-4 months for my gums to heal fully and properly, so that when he fits the false teeth, there should be few problems and easier alignment. I am at the point, where I don't mind the wait, as I want this done right.
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WEDNESDAY UPDATE

Went to PT yesterday for the first time in 4 weeks. After 3 1/2 years, they moved the Oncology only Rehab to a new facility, and separated it entirely from regular PT and Rehab. The new place is beautiful, but almost twice the distance. However, I can use the Interstate to get most of the way to the new one, and actually saved 15 minutes drive compared to the old. And it eliminates at least 25 traffic lights.

I was the only patient there. Was told for sure, I am there most senior member of the club (as far as going there). I am fortunate that I still have the same therapist after 3 1/2 plus years, and no one knows my body and limitations better than she can.

They took the better quality exercise machines to the new place, which was a nice touch. The inside walking area is limited, and a bit tedious, because they don't have the long hallways that the other building offered. But parking is easier, so its a good trade off.

My insides are starting to settle down after the blockage issue of last week. Not quite as sore sitting down, but still not feeling totally back to normal. When I need to "go", I have little signal or indication, not really any natural urge, and I still find myself tensing up in advance (in fear of the former trauma), which I know isn't helping the matter. But it will take time.

Found out my weight scale at home is overstating by 2 full pounds, had my suspicions, so I actually weigh 2 pounds less than the scale says.

Eating without teeth is proving to be more difficult than we anticipated. I am sick to death of the things I can eat, and long for things that involve teeth. Smashing up or pulverizing normal foods to eat, often ends up being gross and unappealing to me. No easy answer.

At PT, they did a full body assessment on me, and it wasn't good. Based on the readings 3 months ago, I have lost 50% of my agility and strength in my arms and legs. No real surprise there. I am amazed that I still have the strength and ability that I still possess. To look at me, you wouldn't think I could lift a pound, lol. Yet the other day, due to the fact that no one was around to help me, I unloaded a box from the back of our truck that weighed 75 lbs. Not that I could do much with it once it was on the ground, my upper body/chest strength feels about the same to me.

I have cut down my use of Norco between 1/3rd and 1/2 per day (depending on pain level and mix of pain). Due to my severe weight loss, I don't feel I need all the formal level of pain meds, since the drugs are serving a much lighter body. Since I use that as break through med, my doctor has no problem with me deciding the dose, as long as I never exceed the max. daily dose he has me on, and in nearly 5 years, I have never once taken more than I should. The fentanyl patch still is the main source of my pain relief, and I or my doctor, have no reason to change the patch size. It works well, and my body well tolerates it.

My next goal this week, is to touch bases with my private PCP and the VA to find out what is the next step and/or appointment, concerning the weight loss issue. Both thought I was in a severe situation that required immediate treatment, yet weeks go by, and absolutely nothing happens.

Perhaps when I need to be wheeled off in an ambulance to the ER, or in the back of a Hearse, perhaps then, they will get off their a** and decide to do something.

Meanwhile, I continue to be, the Incredible Shrinking Man.

Tim, I can't make any doctor do anything in particular. They are just not following up with me, and me leaving phone messages gets no results. Not like I can stand there with a gun in my hand, and demand an answer or solution. Both doctors acted and spoke as if it were critical but their lack of action, no treatment plan, no other tests ordered, etc. - speak as if it really either doesn't matter, or its not as dangerous as they claimed it would be, or they are just being plain negligent. Or a combination of all of the above.

Not leaving the office the visit is over isn't a practical solution in real life, all that's going to do, is for them to call security and have me escorted out.

I am close to the point, where I simply don't care either. What difference does any of it really make? I already feel like I am becoming invisible, and have no relevance left, and no real purpose - other than simply existing for another day. Whoopie! Every day is a bonus to me, is a joke when your life sucks so much, and you have to live with constant pain and problems without solution. What's the point? Just so you can be miserable for another 24 hours?

From the time I was first treated for PC back in October of 2008 to now, its been almost an endless disaster story, no point repeating any of it, we are all sick of the saga (especially me, I had to live it), and there is no end in sight with what is going on with my body. I didn't ask for any of this to happen, but I have sure have had to pay the price endlessly regardless.

Never mind, even I am sick of me and this nonsense. Whatever happens, happens, no point me giving it any more thought. Had enough of doctors and tests that go no where.