DeanCarl

Heather, Right now you are doing maybe the hardest job known to man. Trying to help someone who doesn't want help but desperately needs it is a bear! But, like you said, somethings HAVE to get done and I'm glad you have the courage to do those things even though you know it might irritate your father. A little story: A LONG time ago I blew out an ankle. I was laid up for over 2 months (a BAD blow out). Now, I'm a bull headed Norwiegen who, of course has to do EVERYTHING for my self. I had two very close friends (a couple) who were trying to help me out at the time and all I was doing was making life difficult for them. After about a week the lady had had enough. She looked at me and almost yelled "What right have YOU to not let us love you!". Stopped me dead in my tracks, let me tell you. From that point on I let them help. Hope things work out for you! Dean

Guess I'll echo the "wet" sentiment. We live in an area that isn't prone to floods or landslides so we're doing ok. No euciliptas (sp?) trees around us either so that's a good thing. How in the heck did God design such a HUGE tree with such TINY roots? One drop of water and it's "timber" for those things! Dean

Heather, In California Contact In Home Supportive Serveces through Social Services. I think your mom will qualify due to her income even though she owns a home. The neat thing about IHSS is that your mom can hire WHOEVER SHE WANTS (including you!). The amount of pay will depend on how many hours of service IHSS authorizes. The pay isn't a lot (8.50 an hour) but it's a lot better than nothing. Let me know how it works out. Dean

Lori, Get a piece of paper. Now in really BIG numbers write "6 to 12 months". After you do that rip that paper into at least a hundred little pieces and chuck it in the waste basket! Doctors and others come up with those numbers based on what they read in medical journals and their own personal experience with this disease. The studies usually involve a large number of people and what you get is the AVERAGES from that large group. Well you mom is NOT a "large group" of people. She's your mom. A single individual who will live as long as she lives. As for HOW to live. All I can say is that I've been living my life the same way for quite awhile now (long before I was dxd). There is only one "time frame" that really means anything to me. And that's the 24 hours I have to live TODAY. And I don't do it that way 'cause I'm dying. After all we are ALL headed in that direction anyway. I do it because I'm ALIVE today. Oh, and by the by. The numbers I was given when dxd? 8 to 15 months. That was 15 months and 3 days ago and I'm still chugging along. Dean

Cheryl, I can't add much to what the others have already said. As you've read brain mets ARE TREATABLE. As for the fear, it's about as normal as normal gets. But it does not have to own you. And, as you can see from all the posts, your not doing this alone! Dean

Lots of discussions over the last year or so about statistics and what they really mean. Well, my stats said that, left untreated, I would live between 8 and 15 months from the time of my dx. Well, today is 15 months. As of today I do not have any symtoms of metastisis to any other major organs. My liver function is normal, no indicator of any mets to the bones or the brain. The major symptoms I do have are the ones I started out with (SOB, cough, muscle weakness (especially in my legs but throughout my body as well)) that have simply gotten worse as time has gone on and that is only to be expected. To tell the truth I must confess to feeling some "survivors guilt" lately. So many good folks have come here, many after I did, fought this disease with everything they had, and are no longer with us. I hope my situation will not bring any more pain to the loved ones of those folks. The flip side of that same coin is that I hope my situation can, in some way, calm some of the fears for the new folks here who either read or are told they have a certain amount of time left on this earth. The truth is no one really knows. So I don't let the "stats" control my emotions. After all, the most important "stat" is that I am alive and healthy enough to find some enjoyment in life. All else pails in comparison. I hope every one had as good a Christmas as it was possible for you to have. Dean

Welcome Debbie, I am sorry you had to seek us out ... but VERY glad that you found us. There is a TON of wonderful folks here with just about ever type and stage of this disease you can think of. No matter what the next few months bring for you and your brother someone here will probably have experienced the very same thing. A couple of things. One is to remember that, from the moment you found this site, no matter what happens you (and your brother) don't have to do any of this alone! Ya know all the things "I" can't handle? Well, "WE" can! The other thing is that I believe in the bottom of my heart that ATTITUDE IS EVERYTHING. As you can see from my sig I was dxd with Stage 3, inoperable cancer. I wasn't given a whole lot of time. Yet here it is, over a year later, and I'm still around causing hate and discontent amongst the masses! And that's without ANY treatment (except for palative (treating the pain and discomfort and such) at all!!! I firmly believe it's been my attitude that has made that difference. And remember, unlike the weather, attitude is a CHOICE! One we can make every day. So no more of that "victim" stuff. Your brother, from the moment of his diagnoses, is a cancer SURVIVOR. As I am and as so many others here are. Yes, it's a scary time. Yes, the road ahead can be pretty bumpy in spots. But thousands of folks have walked that road ahead of you and your brother and you can also. Praying for nothing but good news from here on out for the both of you. Dean

A lot of folks here say they find my words to be of some help. Well, I can trace the origon of my way of living back to Nov. 22nd 1979. That was my first day clean and sober after 15 years of hard drinking, using and living. So as of today I've been clean and sober 25 years. When I got dxd last year I kinda wanted to live long enough to see this day and, by the grace of whatever power you believe in, that has happend. (Though, to tell the truth, I really didn't think it would). And the kicker is .... it's been a GOOD 25 years. I came off the streets, went back to school, met a WONDERFUL lady who is still my partner in this journey and built a reputation as one of the best in my proffession (and not in just one profession ... but TWO totaly different ones). But what has made the last 25 years so good has been the chance to meet and get to know people. Good people. People like you all. People who taught me to live, laugh and love in ways I never thought possible. I don't know just how much longer I have in this world. But be it weeks or months or whatever, when it comes time to lay my body down for the last time I know I'll be able to say to myself, "Yes, it WAS a good life". And it don't get much better than that! Dean

Well, I actually have a little energy left over this evening so I thought I'd post an update. There really hasn't been much change lately. Still house bound due to muscle weakness and that's not going to change. I WILL have to make a trip the the social security office in the next couple of weeks as my State Disability runs out and I switch over to Social Security Disability. It's all been aproved already and I'm just waiting on the notice from the State that they are tired of giving me money. We "inherited" a new bird feeder from some neighbors that were moving. So now we have two and the various breeds of birds are working out who uses what feeder. Funny as heck to watch A big ol' red tail hawk took care of part of our wood rat problem the other day (the wood rats moved in after the fire last year) and I happened to be looking out the window when he made his strike. Absolutely increadable bit of flying! I do feel some sadness from time to time over the things I can no longer do, but I try to focus on those things I CAN do and am constantly on the lookout for new things to occupy my time and mental energy. I guess the problem there is I didn't expect when I made the choice over a year ago not to agresively treat this ilnness to be alive this long. I'm on the board daily and think about you all often, even the newcomers I haven't replied to. My attitude toward this disease remains the same .... it may kill me, but it will NEVER beat me! My goal for the rest of my life is still the same .... to live it as well as I can for as long as I'm here. That attitude and goal has allowed me not only to survive the last year, but, at least in my mind, to flourish. One last reminder: Remember, "I" can't do this .... but "WE" can. And if you will allow me a little tribute: "Praying for us all!" Dean

I put a post in the "Path Less Travelled" forum that might be appropriate for others too. In case you don't regularily puruse that forum please go take a look if you wish. Dean

I was walking quite comfortably along this path less travelled when suddenly the path turned upward at a steep angle and what had been smooth soft grass changed to rocky ground. Being the macho egotist that I am I forged ahead regardless and soon found myself with twisted ankles, bruised and battered skin from falling on the rocks and completely exhausted even tho I'd only travelled a short way. Discouraged, I found a large rock and sat there dejected and confused. This was, after all, my choosen path. Choosen because I had thought, for me, it would be the better of the choices I had. Now I wasn't too sure. After a few minutes there was a movment to my right. A small green gecko lizard had hopped up on the warm rock. He seemed quite interested in a line of ants just below him and soon was enjoying his miday meal. I then heard some chirping in the trees beside this path. Turned out a family of song birds were squabbiling over some seeds from the trees. I'm not sure how any of them had time to eat because as soon as one of them landed to grab a seed three others would come hollering after him and chase him off. The scene brought the first smile to my face in quite a long time. Suddenly the gecko disapeared and the birds became very quiet. I looked around to see what was happening but saw nothing until I looked up. There, criss crossing the sky was the biggest red tail hawk I'd ever seen. I sat and marveled at his majestic command of the air, moving back and forth, up and down, without ever seeming to move his wings. Suddenly he dropped from the sky in an almost vertical dive to the ground. I couldn't see him for a bit as he was behind the trees, but in a moment he flew up with what looked like some small animal in his talons. And as I sat there on that path less travelled and day turned to night I realized that no matter how rough the road benieth my feet may be there is wonder all around me if I just stop for a moment, lift my eyes from the rocks, and LOOK. Dean

I am taking WAY too much vicoden to even TRY this! OUCH! Dean

Dragon Speaker is one of the better "voice recognition" software out there. I know a couple of folks that use it and are quiet pleased with it. Dean

It was Sept. 26, 2003 when I first heard the words "there is something else in there" from a doctor looking at my x-rays we'd had taken looking for pnuemonia which, at the time, we thought was causeing my muscle weakness and general malaise. A month later, due to having to deal with the VA and being surrounded by a major fire, I had my full diagnosis and had decided on the treatment option I would follow. I really had no expectations, at the time, of being alive this long. I remember telling Gay after the Super Bowl last year I was glad it was a good game because I probably wouldn't get to see another pro football game. And yet, here I am wondering just how badly the Chargers will do THIS week. A quick update: Everything is pretty much the same as a posted a couple of weeks ago except for a worsening cough and more weakness in my legs. Good news is I started on Megace for my appitite and it's working quite well. It's nice to be able to want to eat again! I was thinking about the "glass half full" reply I got to my last message. I took it as the compliment I knew it was ment to be, but for some reason it didn't seem to quite fit. After thinking about my life (especially this last year) I came to realize that I am blessed beyond belief that my glass (life) is never "half" anything. No matter how much I drink of that glass it always seems to be full to brim and just waiting for me to drink some more. So much I've learned this last year. I guess the biggest lesson learned was that I CAN live a full life no matter what the situation might be. I also learned that I can NOT do it alone. And I've learned just how lucky I am in that, thanks to you folks here, I don't have to do it alone. Dean

Can't speak for anybody else. But you've made a difference in one person's life ... mine. Dean

I think the idea of a second opinion is always a good one. But your post left me with a question rather than answers. What does you husband want to do? It is, ultimately, his decision on how to treat, or not treat, this disease. If his wish is to continue the fight then I'd suggest getting a better team together. Folks that are willing and able to provide the treatment, and hope, that he needs. If, however, his choice is to walk "the path less travelled" then he needs folks around him who support and understand that decision. Praying that whatever the decision might be that the road ahead is smoother than has been travelled so far. Dean

I can only add my unqualified WELCOME. And, in fact, invite some of your co-workers and other medical proffessionals who deal with this disease to come join us! The more that you folks understand how we feel, the more WE understand how YOU feel about this disease the more we can work TOGETHER. And that means more people survive this disease. Dean

I had no proplems at all with applying for benifits. I got on State disability right away and was aproved for SSD very quickly. Since SSD wants me to use up my state disability first I'll be on that until November and then SSD will kick in. Dean

Karen, I have a lot of regrets about things in my past. And EVERY SINGLE ONE OF THEM is about things I *DIDN'T* do! Sure, some of the things I DID do turned out to be mistakes. But I don't regret doing them. Dean

Beth, There's a couple of things that come to mind. First off, take that word "normal" and add the word "new" to it. Don Wood first brought up the term "new normal" to describe life after a cancer dx and it works for me. You DON'T wake up each day without it being there because .... well .... it's there. But you can take a break from thinking about it every minute of the day. I call it "thinking about a zebra". Here's how it works. If I'm asked NOT to think about an elephant, guess what? E-yup. No matter how hard I try to not think about that darn elephant, there he is right in front of me with those big floppy ears, long nose and wrinkly grey skin. But I've found that if I think about a zebra instead then POOF, the elephant is gone. So I work VERY hard at times during the day where I think about other things instead. I have some favorite tv shows. I play poker on the internet. Whatever works for you. Finally ... break it down into bite sized pieces. You don't swallow a whole steak all at once. And you can't live your life "all at once" either. One day at time, one hour at a time, one MINUTE at a time you just take care of the next indicated thing, whatever that means at the time, and the next thing you know you've made it through one more day or one more week or whatever. Living with cancer isn't easy. It takes work in areas we sometimes aren't used to dealing with. But it CAN be done ... and succesfully. Keep banging away at it, Beth. You'll find the enjoyment in life that's there for the ones that look for it. Dean

As a couple of folks have noted I haven't posted much to the board lately. The reasons behind this have nothing to do with the recent "flaps" here. I usually do not get involved with those kind of things and didn't really this time. The truth is I've taken a bit of a downward turn over the last couple of weeks. As I stated in a previous message I'm dealing with very low blood pressure. The meds I was given raised the blood pressure, but I had to stop taking them 'cause they caused severe diahrea and dehydration. So now my blood pressure is dropping again. Oh well, I'd MUCH rather deal with making sure there's a wall or chair handy than taking up permenent residentcy in the bathroom! I've gotten much weaker over the last couple of weeks also. So far I am still able to take care of my personal needs and get around the apartment as long as I only try to do one thing at a time, but I can see the day comming when that will no longer be possible. I've had to up the pain meds again and THAT is the real reason I haven't posted much. I end up being pretty foggy headed a lot of the time and, while there is much I would like to say to so many of you here it becomes kinda difficult, at times, to put those thoughts in a coherant (sp?) message. The above sounds like a real downer ... but please, PLEASE don't take it as such. None of what is going on with me physically was unexpected and none of it is getting to me emotionally. I simply refuse to let it. I still spend the major part of my day trying to find ways to enjoy it. The bird feeder outside my window is a big hit with the local featherd population, the little gecko lizards still drive the cats crazy by sunning themselves just in front of the screen door where the cats can't get at them, the garden (surprizingly enough) is still blooming (I think due to a very cool summer we've had this year for this part of the world) and, most importantly, I still have Gay here with me each and every day. The biggest lesson I think I've learned over the last months is that life can be lived, and lived fully and joyfully, no matter what a persons situation might be. I always had thought that one of the worst things that could happen to me would be to be stuck in the house. And yet, though I haven't been able to get outside except for twice in the last 2 months I've found there ARE ways to enjoy my life. Don Wood said it a long time ago ... it's all about enjoying the things we CAN do and not dwelling on the things we can't. A quick note to the newcommers here. You have come to us at a time when we lost some folks who were very precious to us. From what you've read you might think that the battle you've entered into is a futile one. But that is simply not true! You'll find that the monster doesn't allways win. There are a ton of folks right here on this board that are alive and doing well LONG after any statistics or doctor's perdictions ever thought they'd be. And even when the monster has done it's worst, did it really "win"? Does anyone here really believe that the monster "won" over Tbone? Or DavidA? Or beckyg? Or the Duke? Or all the others who came here and gave so much of themselves so that we could deal with this illness a little better each day and have now moved on to whatever comes next in the journey we all are on? *I* sure don't believe it! Not for one minute! I've said this before and I'll keep on saying it because it's true. This illness may kill me ... it will NEVER beat me! There is much more I'd like to say, but I'm getting tired again and Law and Order is comming on in 10 minutes! I'll post again when I can. In the meantime please know that I'm on every day to see how you all are doing and that I think about you a lot. Dean

I am on 02 on a PRN (as needed) basis. When I'm just stitting watching TV or something I don't need it, but I do need it when doing anything active at all. I also find that if I know I'm going to be doing anything active (getting dressed, cooking, etc.) it helps to go on the 02 about 20 minutes or so before that activity. I also use a small dose of morphine (again, as needed) to help with breathing when I need it. And it really does help. Dean

Lillian, Having just gone through a similar experience with last years Cedar fire down here in Alpine (although by the time we were told to evacuate there was no way TO evacuate with all the roads closed) all I can say is that I've been thinking about you all week and am VERY glad to hear you are safe and that your home was spared. Dean

In my opinion that's the ONLY way to LIVE! Anything less is simply existing! Dean

Elaine, E-yup. That's exactly the way it is with me. I'll do ok for a day or two and then have a couple of days where I'm pretty much glued to the couch due to weakness and fatigue. And it doesn't seem to be related to any outside factors like sleep or fluid intake or how much I use my oxygen. As for before my dx: One of my biggest complaints for the year before my dx was that I always felt "old". I'd see folks 15 or 20 years older than me, doing the same job I did, and having a lot more energy than I seemed to have. I know now that my low energy and tiredness during that time was due to the cancer, but I didn't know what was going on then and it was pretty frustrating. What I try to do today is concentrate on what I can do to enjoy my life no matter what the situation might be for that day. If I can do a lot, great. If I'm having a day where I can't do much, well, I find some tv to watch, maybe play a little "on line" poker, and watch the nutty birds argue over the bird feeder in the yard (bird watching is also a favorite occupation for my cats also. ). I've found that, no matter how tired and worn out I feel there seems to always be something going on that I enjoy. Dean