This was my normal every 3 months visit with my doctor, last one for the year. We did take blood for my 2nd PSA check of the year. A week later, no results, this is not normal, I usually get a phone call/message within 48 hours.
Entire visit lasted nearly 1 1/2 hours, there was a lot to go over. Plus, they changed how these appointments work, now involved me spending time with 3 different nurses, a great Nurse Practicioner, and then my doctor of course. In the new layout, most of the visit is with the NP, and when she was through, she stayed while my doctor wrapped up things.
Only the 2nd time I had met and talked with the NP. She was thorough, and very sharp, and very empathetic to my many woes. She had reviewed my extensive history prior, and said that I had been put through the wringer way above the normal PC patient, and admired my endurance through all these unpleasant trials along the way.
My doctor was furious with the VA. He said he had a good connection with my previous VA doctor, and for them to dump him, and make me start at square one on Dec. 22nd with an entirely new doctor made no sense to him. He said, if needed, he will talk to the newly assigned doctor, and bring him up to speed on my case.
In the short version, he still feels that nothing is really needed to be directly done on the PC side, unless there is some huge spike in the latest test, which he is not expecting. He said my case is still about damage control, and pain management primarily. He said the other VA doctor absolutely wanted to run a new special PET scan on me, and he's hoping the new doctor will agree. I plan to push for that when I go to the VA.
Part of the problem, and I respect his honesty, that some of my special issues are beyond the normal scope of an oncologist, so he's really counting on me getting the right kind of help from my other doctors. As you all know, that has been an object of futility most of this year. Including all the time I wasted with that neurologist, and even more recently with my long term PCP. I feel like he gave up and threw me under the bus.
One minute, he's talking about feeding tubes, and the next, left me hanging up in the air with no answer or solution on all the weight loss. From my lowest weight point, I slowly gained back about 3-4 pounds temporarily, but that was only because I was gorging on sugar junk, not because of any change in appetite. But it was short lived, have lost almost all of that gain, and back to losing at least 1/2 lb. per day, whether I eat once a day, or 3 times a day.
I am backing off the sugar and junk calories, not good for the cancer, and not how I want to regain weight. Year upon years of junk eating, is why I was a fat guy for so many years. I want to stop the loss, regain at least 20-30 lbs, but through healthy eating.
He was not happy with the delay on my dentures with the VA, but realizes that we have to go along with the plan, since the VA is footing the entire bill. At this point, not convinced another 2-3 month delay is going to radically change a thing.
The way things were left, he wants me to see the VA doctor (the new one), bring him up to speed, and for me to give him a condensed set of medical notes on my case (which I have in a sealed envelope in my car), and see what the VA wants to do next. I agree with him. The appointment is only in a little over 1 1/2 weeks away, right before Christmas.
Depending on what the VA wants to do, and how fast/slow they plan to act, my doctor will reserve the right to order other tests/scans, etc. He still feels its in my best interest to retain him as my oncologist and my pain manager. I agree with that, plus the VA agrees, as they state, that even in Columbia, they do not have any one of his experience or caliber to replace him. On the pain front, we live in an age where its getting touchier and touchier for doctors to prescribe long term strong pain meds, even to legitimate chronic pain patients. As a rule, an oncologist has more leeway on these types of drugs than most other types of doctors. Especially with my long track record with multiple cancers, 2 disastorous bouts of radiation, etc.
Plus, the VA, while I could get all my pain meds for free, don't prescribe Fentanyl. They already told me, they would switch me to regular Morphine. Been there, done that, and don't want to go there. Fentanyl is stronger, and after being on it for nearly 3 years, my body is very acclimated to how it acts and reacts to it.
There is still no explanation for my legs giving out, knees buckling, etc. Very frustrating, and its a miracle that I haven't taken a bad fall and breaking bones. Only a question of time. He wants the VA's help on that one.
And some of my newer symptoms, this long periods of shaking cold spells (without any evidence of fever or sickness), burning patches at random places on my skin, etc, still need to be addressed. Will be interested to see what the VA can do in those areas.
So needless to say, I have a long written list to go over with the VA. And hope I walk away with some distinct test plans or treatment plans. All in all, 2014 was not a good year for me with so many issues, and basically no answers.
As a final point on the PC side, he still feels, that as long as there is no physical evidence of any Mets being picked up, to stay the course, and to keep buying me as much time as possible without going to HT or Chemo. Still feels that day will come, but until it does, why make me any more miserable than I am already living and enduring. I still agree. If I felt even remotely threatened by the cancer, I would be pushing for treatment, but I don't.
Every case here is different, and my PC journey has ran its own bizarre path thus far.
On a scale of 1-5, 5 being best visit, I would rate this one as a 3.5 with my doctor himself, but a 4.5 with the NP, I really liked her interest, care, and style, and she gave me one through physical exam in the process, and she asked all the right kinds of questions, and took her sweet time patiently answering every single question on my written list, until I was completely done. Made me feel like I was the only patient on the board that day.
All for now.