Busy day for me, went and saw my VA assigned PCP, and then had to go to GHS for treatment #14.
Good visit at the VA. Spent 15 minutes with a nurse, then 1 hour and 15 minutes, one on one with the doctor.
To say the least, he was horrified at how I look. He was totally shocked, and angry at my "civilian" doctors who are still clueless about my drastic weight loss. By his records, I have lost 95 lbs. since I last saw him in January. He had me take my shirt/pants off, and gave me a good physical exam, and shook his head, and said I had all the classic displays of "wasting disease". Said I had massive muscle loss in my arms in particular, and significant loss in my upper and lower leg muscles.
He said his greatest fear for me, was that an undiagnosed secondary cancer was at work in my body, and couldn't understand why more extensive testing hadn't been done. He was suppose to be getting copies (at my request) of all my scans ,blood work, etc from my other doctors, but none had bothered to send him anything this year, despite me having 6 MRI, a PET scan, some CAT scans, and various x-rays, let alone all the blood work that has been done by different doctors.
He then spent on/off, trying to reach both my regular PCP and my oncologist on the phone. He never could even get my PCP's office to answer their phone, so he left a harsh message. After many attempts, he got through to my oncologist's office at Gibbs, and was told that the doctor was too busy to take the call. Keep in mind, I was sitting right there while this was going on, so he told them, that this was an emergency, and to have the doctor paged no matter what. So the two of them spoke for a goo 15 minutes, and my oncologist was honest enough to tell the VA doctor that both he and my PCP were clueless about the weight loss, and weren't sure what to do next.
So the VA doctor said enough was enough, and that he would be now take charge of the issue himself. He was still going to talk to my PCP first, then come up with a treatment plan of his own. Going to send me to a good ENT doctor (civilian, as he said the VA didn't have a good one of their own), order all new blood tests, order some really specific new scans, etc. He said there has to be a physical or medical reason for such severe weight loss, and we had to find out before it reaches the point of no return for me.
On another note, due to the remote possibility, that the lump in my cheek could signal a return of the porocarcinoma, he's contacting my original oncologist, who was the treating physician during those 3 events, to get him to look at my cheek and feels it warrants having it removed and examined, since we are talking about such an ultra rare cancer, that normally would not be checked for. This is some thorough exam going on.
He said he will call me personally, with the first steps needed, within 24-48 hours. He still wants me to go ahead with the upcoming dental surgery and to continue the hyperbaric treatments, knowing first hand, how difficult it is to get such extensive dental work from the VA. Said I would still continue to have the lack of appetite with or without teeth, and he's right on that point.
Said its too soon to consider any kind of feeding tube, as there would be difficulties with some of my other issues and having so much scar tissue and radiation damage doing it, so he's recommending holding off on that until he can get a full evaluation of the situation.
Was rather surprised by how quickly he took over things, and sounded very determined to help me, no matter what.