Wednesday, July 31, 2013
It's hard to believe that my last post was back at the end of May. It feels like it was only a few weeks ago. I haven't written anything since largely because I simply haven't felt like writing. Part of it has been because I'm getting more sleep these days. Most of my previous posts were written while I was up in the night dealing with one pain or another that kept me from sleeping but lately those moments of nocturnal solitude have been few and far between. These days I tend to get up only once or twice in the night and am often able to go back to bed rather quickly after taking medication or stretching or whatever is required to quell the discomfort that woke me in the first place. When I do get up in the night, I have a tendency to nod off where I sit only to wake up an hour or so later and return to bed.
A lot has happened since my last post that I wanted to write about but somehow just couldn't bring myself to actuallly sit down and do it. When I saw my oncologist at the beginning of June, I received some news that was pretty devastating to me personally. It probably seems pretty petty to someone looking at it from the outside and probably is in the grand scheme of things, but it still hit me pretty hard. At that appointment, my wife wanted me to ask the doctor if it was OK for me to continue to ride my motorocycle. She was concerned that perhaps the vibration of the motor could somehow cause problems for me with all that I have going on. Ever the skeptic, I was not prepared for the answer that he gave, that he would not be comfortable with me riding, not due to the vibrations, but due to the risk of complications from any injury that I may receive should I get into an accident on the bike. He explained that the cancer in my bones has left me in a similar condition as someone with osteoperosis, that my bones are brittle and weak and that any serious accident would only be complicated by this fact. The Xgeva that I take is to strengthen my bones, to make them harder. It is often given to older women who suffer from osteoperosis which I think I had read when I first started taking it, but somehow that information didn't sink in at the time.
The news was a shock to me much like my original diagnosis as it was equallly unexpected and had a much bigger effect on me than I would have imagined. You see, riding my motorcycle is one of my few true passions, something that originally brought my wife and I together and something that we've been able to do much less of since the kids arrived. It's difficult to explain the freedom that one feels when riding up and down the hills and around the curves of backcountry roads, difficult at least to someone who hasn't experienced it. Hearing that I couldn't ride again filled me with helplessness, mostly because this is not a temporary condition, but a permanent prescription, a freedom taken from me, that would not return over time. The worst of it was that the doctor didn't outright tell me that I can't ride, just that he "would not be comfortable" with my riding my bike. He had put it all on me, given me the facts of the situation, and advised me that it's not in my best interest, then left it up to me to make the right decision. I thought of writing about it then, tried to come up witih the words to explain how I felt about it all, but just couldn't do it, but my wife did a better job at putting it into words than I ever could have in her own blog.
As I slowly recoverd from my angst over the motorcycle issue, I started having these pains in my legs. At first my pain doctor suggested applying heat to the areas in question for relief and for a while, that helped, but within a couple of weeks it had gotten to the point where the pain continued through my doses of medication without abatement. I reported this to the doc and he had me drop the Lodine from my regimin and switch it out with Ibuprofen. Surprisingly that worked. The Ibuprofen made the pain in my legs go away and I've mostly felt pretty good since then as long as I stay on schedule with my medication. The Ibuprofen is only supposed to be taken every 6 hours and I can usually tell when it's been 5½ hours without looking at a clock as the pain starts to slowly seep back in around then. In the last week or so, I've been able to stretch it out beyond 6 hours here and there and have been taking smaller doses of it.
With this new regimin in place, I took the family on vacation to Chincoteague Island, VA. Overall the trip was a success as I made it through the week, as well as the 4 hour drive down and back, without any complications. I even rented a bicycle one day, one of those with the kids tagalong bike attached to the back, and took my oldest for a ride around town that lasted a couple of hours. I was surprised that I not only was able to last that long without any pain or exhaustion, but also that I didn't have to pay for iit afterwards. I fully expected to have some kind of pain afterwards even if it was just muscle soreness from putting them through unfamiliar paces, but surprisingly there was none. Other than feeling a little tired and dehydrated, I felt fine afterwards. I took this as a sign that my pain doctor was correct, that my curent pain is largely musculoskeletal and that I need to start getting more exercise into my routine to keep the pain at bay.
I have noticed that on weekends as I'm out working in the yard, I just don't notice the pain until I stop and sit down for a while. Sometimes while working outside I'll go beyond the time that I would normally need to take more medication and not even realize it until I stop, other times if I feel pain coming on before it's time to take more meds I've found that going for a walk helps to reduce the pain until it is time for medication. It's been difficult to find time to work some kind of exercise into my daily routine, but I now know that I need to find a way to do so.
Today I visited the folks down at NIH again. After my last visit to the oncologist, he gave his blessing for me to enter this study that they've been trying to get me into so now that I'm ready to go for it, they are desperately trying to fit me into the protocol. The study requires that in order for me to enroll there must be evidence that my current treatment is no longer working. The problem is that I am doing great and am continuing to improve. They need data that shows a negative trend which thus far there has been none. It sounds like the bar for proof is pretty low which is why they keep taking so many tests whenever I visit so today they took blood once again and depending on the results that come back, we'll determine next steps. It's a little amusing that they've been pressuring me for some time to enroll in the study and now that I'm wiling, they are now not so sure that I can qualify, but are doing eveything that they can to shoehorn me in somehow.
It feels good to finally get something written after all of this time. If you are one of those following this blog to keep up with my progress, I apologize for the long wait, but "no news is good news" as they say and other than my depression over the motorcycle situation, things have been going really well for me. I seem to have achieved some measure of normalcy and am able to maintain that for the time being. I've been going into the office pretty much every day for the last couple of months without any negative consequences. It's been busy at work which hasn't left me with a lot of time to worry about keeping a log of every ache, pain, or discomfort that I've had. Mostly when I do feel it lately, the level of discomfort has been pretty low with it being more annoyance than anything. Hopefully this current trend will continue for the time being. We'll see what the next few weeks and months bring.
Posted by Clint Brown at 12:21 AM