Tuesday, April 2, 2013

NIH

The last few days have been pretty good ones. Pain has been moderate and is once again wandering but has been mostly in my lower back of late. Vicodin has kept it under control for the most part.

Thursday I went in for a bone scan which sounds more ominous than it is. I had to go in first to get an injection of some kind of radioactive marker which then settles in my bones so that it shows up clearly on the scan. I then go back later in the day to get the actual scan which looks a lot like the machine that I got my radiation treatments from. Anyway, I had to lay there for 45 minutes while this thing passed over me at a snail's pace.

I later picked up a copy of the results so that I could take it with me to my assessment at NIH. The report stated "overall improvement" from the last scan that I had. I haven't yet talked to my doctor about his impressions from it. I don't think that he was only looking for a level of improvement, but wanted to look at some of the details of the scan to determine if the current pain regimen is the correct one.

Saturday was a nice day so I decided to do a little yard work. After about an hour, that was about all that I was good for so I just sat out on the deck and enjoyed the day while watching the girls play on in the yard. By evening, I was feeling some pain in my back, most likely due to the yard work. I'm out of shape, tired, and atrophied enough that an hour's work takes quite a bit out of me, plus the work started with some difficulty getting the motor started on my leaf vac. It didn't want to start at first and took some persuasion to get it going, but the motions that went into getting it started pretty well matched up to the muscles that were hurting later.

Sunday was much the same as Saturday in terms of how I was feeling. I woke up with some of the usual pains, took meds and went on with my day. We drove out to Westminster to see some of my wife's relatives. I made it out there without the car ride causing any pain. In fact, I was still in some pain when we got in the car to leave, but by the time we arrived I wasn't noticing it anymore. The drive back was much the same.

Went to NIH on Monday. This took the better part of my day as they asked me to be there an hour and a half early to deal with security and admissions. My wife wanted to come with me, so we also had to drop off the girls with her parents who, thankfully, live near the facility but that added to the time needed to get there. Once we got there, we had to go through the whole security exercise of getting out of the car while they looked it over for contraband and we walked through the requisite metal detectors. We each got name badges to wear, even the baby got one. Next we parked and then went about finding our way to the admissions desk where I was asked a number of questions and then given some identification paperwork and a welcome pack. Upstairs in the cancer ward we met a volunteer who explained how it all works to us and informed us that NIH is an acronym for Not In a Hurry. Apparently there can be some rather long wait times, but the reason is that the doctors take as much time with each patient as they need and do not worry about hurrying people through like in a primary care clinic, therefore appointments tend to stack up as the day wears on. My appointment was for 2:15pm and we finally saw the doctor a little after 3:00pm. With everything else that was going on, including the nurse taking my vital signs and a quick meet with the social worker, it didn't seem like we waited all that long.

We met with the fellow assigned to our case who walked through my history to date and asked a bunch of questions about how things were progressing. She then went back and spoke to the doctors on the panel that runs the prostate research and after few minutes she came back with one of the panel doctors and a student that they are training. This doctor talked at length about how the cancer works and what strategies are typically used to attack it. Much of this was review for me but it was perhaps in a little greater detail than I'd heard it before. He talked about some possible trials that they could consider but then explained why he doesn't think that they are right to do at this time. He also spoke of a few that he felt would not be right for me and explained why as well. He also mentioned that the Xgeva that I'm now on is often only good for 26 months or so and that at that point, something else may be needed as the cancer adapts.

In the end, they decided to take a wait and see approach with me for now. My current treatment seems to be going pretty well and there isn't enough data at this point to suggest that something else is needed. They would like to keep an eye on me for the next few months to see if anything changes at which time they may re-evaluate things. He asked me to come back in 2-3 weeks depending on how my pain is over the next 2 weeks. So that's it, no lab rat for me for the time being.

I made it to NIH and back without any complications from the drive, however the next day I felt off for most of the day. It wasn't anything specific, just felt a little drained perhaps. I've now taken 3 rather long drives in the last couple of weeks and have found that I am now able to make the drive without it adding to my pain, but that the day after seems to be needed to rest and recover from it.

The visit to NIH hit my wife pretty hard. Hearing all the information over again and hearing things like the Xgeva may only work for a certain period of time was a little discouraging and brought back all of those feelings from when I was first diagnosed. I think that she perhaps had held a little hope that I'd get into a study that would somehow make it all better, but after talking to the doctors there it doesn't really work that way. "Remission" is not a word that we can ever expect to hear as prostate cancer doesn't work that way. It's not something that can be beaten and conquered but rather must be controlled and managed and that reality can be difficult to swallow. I didn't realize that it had affected her that way until the next day. She kept asking me if I was alright and my answers of "I'm fine" made her think that I was equally impacted by the visit and just didn't want to talk about it. I assured her that my moping around the house that day was all physical, a combination of fatigue and otherwise feeling "off" but that the visit hadn't impacted me in the way that it did her. I've grown accustomed to it all and have accepted the diagnosis, now I just want to get it under control so that we can return to some semblance of normalcy in our routines. I didn't know that it had impacted her as it did and once I learned that it had, I could only stand there helplessly and say "I'm sorry" as there is really nothing that I can do to make her feel better about the situation. All that I can do is offer my love.



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