Coming up quickly on the 1 month mark since I "retired" from HW. In fairness to my many friends and to those that have been concerned on my well being, I choose to give a quick update. For all those that have been e-mailing me since my departure, I thank you and appreciate each of them. I believe I have replied to every one, if I haven't please let me know via e-mail.
On the weight loss issue. No progress, no improvement. Getting much worse, well below 150 lbs. as of today. I saw my PCP for a follow up just today, he's at a loss, and like me, very disappointed that the Gastro doctor was a complete waste of space and time. He gave up quickly, when anything obvious wasn't found via scoping. My oncologist warned me about Gastro doctors - how many of them are "scope" guys only. The Gastro doctor's only conclusion, and I think it's a weak answer, was to blame what is going on, to additional and ongoing radiation damage. Possible, but not buying it, especially since it's been almost 5 years since I had the SRT.
My family has never seen me skinny like this in their entire lifetimes. Had to buy some new shorts today, and it was a size I hadn't worn since I was 18 years old. My PT staff are more than concerned, afraid I am quickly closing in on a dangerous point here. They feel that's its all the classic symptoms of "wasting" disease, though the gastro doctor quickly dismissed.
Still have zero appetite. And I mean it still literally. There is never a time, day or night, that I ever feel any hunger. I do best when I don't eat at all. We went out to eat tonight, ate a modest meal, and was cramped over before we made it back to the car, and by the time I got home, had 3 major diarrhea attacks, and severe and lasting back aches and cramps. Still hurts hours later.
Not sure what to do next. PCP seems clueless at this point, have no interest in seeing the gastro doctor again, I may see if I can get my VA PCP to see me as an urgent case, perhaps they will have other resources.
On another front, another serious situation brewing. I met with the highest level dental surgeon with the VA for the entire state of SC. He came all the way from Columbia earlier this week just to meet me. I was referred to as the "Radiation Guy". He feels that I have severe radiation damage to all of my teeth, gums, and left jaw bone from the year 2000 radiation for my 3rd bout of porocarcinoma.
The previous radiation expert dentist I had seen, thought they could save 3-4 teeth to use as anchor points for dentures, but the big guy, said no, said I didn't have a single tooth worth saving. He also said that I have unusual (of course) extreme bone growth beyond my teeth in both my upper and lower mouth. He said that the 70 gys. of radiation I had back then, was extremely excessive and put me at high risk for both eye and brain cancers, and couldn't understand why so much radiation was used in such a delicate area.
He will be performing a high risk and lengthy dental surgery, 2-4 hours in Columbia, date to be set. But first, I have to go through 4 weeks of daily hyperbaric treatments prior to surgery. Then have the surgery. Then it will be followed by 3-4 weeks of post-surgical hyperbaric treatments.
I will be without any teeth for 3-4 months post surgery. He said it will be a long and painful recovery, due to the amount of work that needs to be done on my gums, jaw bone, etc. During that time, I will have to be on a liquid or baby food type diet. He's aware of my weight loss issue, and obviously, I can only imagine how much more I will lose when I can no longer chew food in the normal manner.
After the 3-4 months of recovery, if all goes well, they will supply custom dentures, but even that, I was told, will be a 1-2 month process, assuming I do not have any recovery problems.
I need the work done desperately, but the thought of going through all of this frightens even me. But he said the risk of me developing even more severe mouth and teeth and infection problems scares me more. Plus, I am fortunate that the VA will pay 100% for everything, including the hyperbaric treatments, which will be done via a private Non-VA facility, hopefully near where I live.
That's the best update I can give. Still dealing with all the same chronic pain and fatigue. The weight loss has not helped me at all in either of those 2 departments, and yes, still dealing with constant bladder spasms, even with my non-working bladder.
I just turned 62 on Sunday, we had a nice family only event at our home, that was nice. July is a big birthday month in our house, as 5 of us have birthdays.
My wife fixed a marvelous meal, tempting me with all my favorite dishes, plus make a from scratch chocolate fudge cake (actually ate 3 pieces that day), but all this good food did for me, was leave me in pain from cramping, so kind of took the enjoyment out of it. And when the week end of all this extra eating was over with, I still manage to lose another 2 1/2 lbs. in just 2 days. Really in a vicious circle right now, and nothing seems to help.
Again, thanks to all that care, thought it was only fair to break my silence and give an update. Will do so again, when there is some progress or something of importance to report to you all.
David aka Purgatory