Saturday, December 10, 2011
Shawn's new site at Caring Bridge
Shawn just started a new site at Caring Bridge - follow him there at http://caringbridge.org/visit/shawngilley.
Monday, December 5, 2011
Painful Reminders
The theme of the past five years has been I just need a diagnosis. After all, I can deal with anything if I just know what I'm dealing with. I'm certainly not going to say that it was better not knowing. In fact, I'm fairly comfortable describing that particular experience as a shit-filled nightmare lasting far longer than one ever thought could be possible.
That being said, this past month or so has been a reminder of what our reality is. The stress MRI found no treatable causes of the heart failure (blocked arteries, etc.) and thus, the assumption is that it's either a result of the beating the heart took over the past few years or it's directly related to the cancer. The good news is that the treatment is proving to hold the cardiac function normal and band-aid fix or not, I'll take it.
The MRI also showed that even with normal function, the heart is still enlarged, however, which is not great. Essentially, if you think of the heart as a balloon, a blockage could cause it to temporarily inflate and upon removing the blockage, the balloon returns back to its normal elasticity. However, if the balloon is over-inflated for too long, it becomes permanently stretched out and worn. So I can add living with heart failure to my list of things to deal with.
What's been most hard on myself and my family is the reminder that this is my life now. When we didn't know what was wrong, we could hope that they'll find this easily treatable thing that'll allow me to resume the life I had before this. And still after the carcinoid cancer diagnosis, every reminder that my life will never return to "normal" forces us to watch that hope we carried for so long shatter all over again. It happened when I picked up the paperwork from the oncologist with the diagnosis "metastatic carcinoid cancer". It happened with these recent tests where we somehow thought that maybe the heart failure was reversible. And it happened when after not being able to digest any food for a week, my oncologist said that the carcinoid syndrome will break through occasionally and there's not much we can do about that.
I've spent a lot of time mulling this over and I think what's so hard is the fact that I'm mourning the loss of the life I thought I'd have. I don't have the energy I used to. I will never be able to work full time due to the extreme fatigue from the medications and the disease itself. I have to exercise every single day because not only does it help maintain my appetite but the moment I stop, my muscles will shrivel to nothing.
But while I do get frustrated with certain realities, I have not let that stop me from creating a new life and planning a future with my new limitations. I do freelance copy writing for a local marketing firm, I teach religious school at the temple, I continue to supply my producer with new songs and I am in the midst of writing a book about this saga. Make no mistake about it, I can be knocked down over and over again but I will never stop standing back up.
That being said, this past month or so has been a reminder of what our reality is. The stress MRI found no treatable causes of the heart failure (blocked arteries, etc.) and thus, the assumption is that it's either a result of the beating the heart took over the past few years or it's directly related to the cancer. The good news is that the treatment is proving to hold the cardiac function normal and band-aid fix or not, I'll take it.
The MRI also showed that even with normal function, the heart is still enlarged, however, which is not great. Essentially, if you think of the heart as a balloon, a blockage could cause it to temporarily inflate and upon removing the blockage, the balloon returns back to its normal elasticity. However, if the balloon is over-inflated for too long, it becomes permanently stretched out and worn. So I can add living with heart failure to my list of things to deal with.
What's been most hard on myself and my family is the reminder that this is my life now. When we didn't know what was wrong, we could hope that they'll find this easily treatable thing that'll allow me to resume the life I had before this. And still after the carcinoid cancer diagnosis, every reminder that my life will never return to "normal" forces us to watch that hope we carried for so long shatter all over again. It happened when I picked up the paperwork from the oncologist with the diagnosis "metastatic carcinoid cancer". It happened with these recent tests where we somehow thought that maybe the heart failure was reversible. And it happened when after not being able to digest any food for a week, my oncologist said that the carcinoid syndrome will break through occasionally and there's not much we can do about that.
I've spent a lot of time mulling this over and I think what's so hard is the fact that I'm mourning the loss of the life I thought I'd have. I don't have the energy I used to. I will never be able to work full time due to the extreme fatigue from the medications and the disease itself. I have to exercise every single day because not only does it help maintain my appetite but the moment I stop, my muscles will shrivel to nothing.
But while I do get frustrated with certain realities, I have not let that stop me from creating a new life and planning a future with my new limitations. I do freelance copy writing for a local marketing firm, I teach religious school at the temple, I continue to supply my producer with new songs and I am in the midst of writing a book about this saga. Make no mistake about it, I can be knocked down over and over again but I will never stop standing back up.
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