Il mio futuro: Sunday, March 14, 2010
Recently, I’ve been beginning to notice what I believe to be, little permanent changes that have been taking place in my system, since treatments ended in mid-December 2009. Believe it or not, I think it’s taken this long for some these things to begin to appear, or come out.
If you remember, a ways back I was told that the proton treatments could, and probably would continue to work on the tumor for as much as nine months after treatment stopped. I am now beginning to understand what they meant by this.
The claim was that the treatment wouldn’t instantly kill the tumor, but that it would alter the tumor’s DNA sequence so that it could not continue to replicate and there-fore, not continue to grow either. Which basically means that the tumor is alive and well for a period of time (hence the nine month span) after treatment.
I think this is true, because I can feel it changing over the last eight weeks.
I find it hard to believe that it was only been eight weeks ago, that I was still undergoing intense treatment at the proton center. Driving back and forth to Boston, and feeling continuously ill for months. It seems like it took place in another life-time even though I remember it (almost word for word or action for action) like it were yesterday.
But here I am, just beginning to understand and feel the effects of what was done during that three month period I spent in treatment. I might even venture to say that “the effects of the consequences, of the decision to go with Proton therapy instead of conventional surgery, are just beginning to show”.
Clearly I’m not saying that I’m sorry for my decision in anyway, I feel that, even the time that I’ve already had, is a huge bonus in comparison to the alternative … but you’d be a fool to think that I walked away from treatment without having some effects that were permanent.
Since treatment ended, I’ve continued to lose weight slowly. Very slowly I might add, but a continuous loss non-the-less. As a matter of fact, I can actually feel the tumor itself, more now, then I could a few months ago. I have to assume because of the weight loss, there is less ‘padding’ around it, and there-fore it’s less protected then it used to be.
That’s right, I can actually feel the lump under my skin more now then before. It’s lightly sensitive too. If I poke it or bump into something … it’s an ouch! … to say the least.
My ability to walk has been changing too. One general statement I could say is that at most times it is now less painful to walk. However, the duration of time that that statement is true, seems to be changing and not for the better.
When I wake up in the mornings, my leg is usually pretty darn non-functional. Almost that feeling that we commonly associate with being “asleep”, you know that almost numb to tingly feeling that we get when blood flow has been cut off for too long. After ten or fifteen minutes of moving around, getting a coffee and such, this seems to clear up and I begin to feel pretty good.
I used to get out of bed and instantly balance on one foot, while I put a sock on, and then do the other, but that’s not possible any longer. I tried that once recently and immediately toppled over onto the bed ! Woke Sher up with a startled look, so I decided I wouldn’t try that again for a bit.
After moving around for a bit, my leg begins to work reasonably well. I won’t say normally … but it’s ok, it moves, what more can I ask for? As the day wears on though, I begin to lose the ability to get around easily. Most days, by around one or two in the afternoon, it’s done about all it’s going to do for the day.
At this point, it becomes a burden rather then a working leg. The odd thing is that you’d think sitting down for awhile would solve this, but for some reason that doesn’t seem to be true. Laying down, for twenty minutes or so, does seem to help. That’s what I do on weekends. Get off my legs for a bit and then I seem fine again and continue on with the day.
I have found that standing in the kitchen, preparing dinner is almost impossible by the end of the day, and that’s a shame because I love to cook! I miss that. My point is that the duration of time, that my leg is useful per day, seems to be lessening over the last eight weeks or so. That’s a bummer, but at least I still have a leg to complain about. It could’ve and would’ve been a lot different.
My back or spine, also seems to be changing too. Prior to any of this I never had any back problems, well except for the occasional sore back from working too hard in the yard or something, but certainly nothing to ever complain about ,or ask the doc about.
Now, I can begin to feel a steady pain about four to five inches above the tumor, except right on my spine. This area was treated pretty heavily as a precaution for the cancer spreading. Not only was the tumor treated, but a large surrounding area was also blasted … and I mean blasted. At the time I asked doc why and he simply explained that it was per-cautionary. It didn’t bother me then, but it is beginning to now.
You know proton treatment is a very powerful thing. I remember not only the sea-sickness feeling but the heat that radiated out of your body after treatment was intense. I was surprised at the time that heat wasn’t warping my bones let alone whatever else it was doing … but no immediate effect. Until recently, and that may change again … I’m not totally convinced that all these are really permanent.
In the same way they weren’t there when I finished treatment, they may not be in another month or so. Of course the opposite is true also, they could get worse.
Either way, I don’t feel like they are preventing me from surviving or functioning on a daily basis yet, but I do feel they are definitely changing and moving around my body still even after this amount of time.
I guess I hadn’t really thought much about these types of things at the time of treatment because I was so damn happy at the time to find an alternative to surgery … but they are certainly things to consider now.
It’s because of these types of changes in my body and bones that I continue to investigate the idea of wheelchairs and where life may lead me, and what that path may be like. I don’t believe I’m in any type of immediate danger, but more of a slow decline in the future. As that approaches, I hope to be prepared for those changes, and to be able to handle them without the loss of functioning in our society.
… and as they say in Italian, quel che sarà, sarà …
