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DeanCarl


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Hi DeanCarl,

I have been reading these boards about 2 years now. My mother was diagnosed Feb, 2002, and she passed June of that year. I still read the boards daily. It is like an addiction. I was depressed lately until I read your responses, rants, etc. You have helped me a great deal.

I was just wondering how YOU are feeling. You are a big help to everyone here. Just thought I'd ask.

JoAnn

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JoAnn,

I’ve been thinking for the last couple of hours on how to answer that question. Usually when somebody asks me how I’m doing my standard answer is “as well as can be expected”. And, in retrospect, that answer is good enough for those kinds of situations because that’s all they really want to know. They are simply being polite … and there is nothing wrong with that.

But I think you mean more than that. So, to answer an honest question honestly …. :

The easy part first. Physically I’m not doing all that well. The disease is progressing as we knew it would when I decided not to aggressively treat it. I’m down to about half the strength and stamina I had in August of last year (just before I got the pneumonia that led to finding the tumor), and maybe even a bit less. Back then I was driving a 41’, 37,000lb city bus 8 to 10 hours a day. Now I need a wheeled walker to get around outside the apartment (and really could use a powered chair or scooter). My breathing has gotten worse recently, though my last test showed I was able to maintain a normal oxygen level even without being on my oxygen machine. But the tests also showed my lungs had to work VERY hard to maintain that level so I use the machine when needed and have my portable system when I’m out and about (good news: I’m getting a new, smaller portable system tomorrow! YAY!).

Now for the harder part. Emotionally I have my ups and downs just like anyone else (my downs seem to be proportional to the amount of time I spend dealing with the VA medical center! :)) but, for the most part, I’m doing fine.

Thinking about “how I’m doing” has gotten me to realize just what a lucky person I am. I have a wife who supports me with all her heart even though I can see the pain she is going through due to this disease. I have a daughter (from a previous marriage) that tries her best to be of help even though she has her own problems to deal with.

And I have you folks. A group of people, none of whom I’ve ever met (though I hope to change that someday), who have done more for me than I can ever repay. You’ve given me a very special gift. Ever since I sobered up (24 years ago) I’ve been involved with some form of “human service”. Whether it was working with the mentally ill homeless, developmentally delayed kids, or even keeping that bus safe and on time and getting folks where they needed to go, I found a lot of joy and satisfaction in doing something that benefited others. I’m just wired that way, I guess. I was pretty upset when this disease took that away from me. Or so I thought. Like someone posted in another thread, one door closed, another door opened. That door led me to you folks. Believe it or not, being involved here gives me one more reason to get my butt out of bed in the morning. As soon as I’m awake enough to figure out what day it is and what my name is I’m on the computer and logged in here. By allowing me to care about you, you’ve given me the gift of being able to continue to care about myself. You can not know how grateful I am for that.

Dean

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DeanCarl,

You are an amazing individual. I want to say thank you to you.

Thank you for several reasons:

First, because of the encouragement, love, honesty, and care you show to people here and elsewhere.

Second, because I have a developmentally delayed son (he's now 15) and I am so grateful there are people like you in the world. It is a challenge (daily), but God gave certain people gifts to work with these kids and my eyes, those people are angels.

God's richest blessings to you and yours!

:)

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what i think of Dean

To Cancer: he is like a human trick birthday candle....he doesn't go out...he may flicker for a moment, but then he is back, shining through, laughing in its face as if to say "nope, still didn't get me down for long"

To Me: (personally) a strong shining pillar candle (like in church) that you wonder every sunday when you see it. "how is it still burning and looking like it never burned down any at all" Its always there stoicially shining through even through hard times, its a constant that I have come to rely on and take comfort in his words of wisdom.

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