DeanCarl

Mine is simply my first and middle name smooshed together. Rather boring but every time I tried to log on to any site that needed user names "Dean" was already taken and I don't like using numbers so .... Now I'm pretty lucky in a way. You see my parents almost made me a "junior" and named me after my Dad. Back in the early 1900's (my dad was born in 1909) his name was fairly common among the scandinavian communities Minnisota and Wisconson where he was born and raised. However, by 1950, when I was born the name was definately NOT common. The name? "Knute Orivill". Like I said ... lucky me! Dean

Shelley, No need to tell you how I feel. I'll be there with you in spirit. Remember, we don't do this alone! Dean

I'm sorry you had to seek us out, but VERY glad you found us. Yes, this is a scary time. But neither your nor your Mom has to go through it alone. There is a TON of wonderful folks here who, no matter what the situation you and your Mom find yourself in, have "been there, done that" and are ready and willing to walk the walk with you. Now, there are a couple of things in your post you can just dump in the ol' toilet. One is the idea of "how long" you Mom has to live. There are folks right here on this board who were told they had 6 months, or a year, or whatever and have lived FAR longer than the doctors said they would. And the important thing is that your Mom is alive TODAY. It seems to me THAT is the thing to concentrate on. The other thing you can get rid of is the idea that your Mom is dying. No, she is NOT dying. As I was told by someone here awhile back (thanks Curtisg!), I'm not dying from lung cancer ... I'm LIVING with it! Big difference. Prayers for you and your Mom and please let us know how things are going. Dean

Jane, Glad you decided to "jump into" the pool with the rest of us. I'm looking forward to seeing a post in the future that lets us know you got your PHD. Dean

Sherri, I'm sorry you had to seek us out, but VERY glad you found us. As you read through the posts here you'll see that there are many, MANY folks here who have lived months, and even years, past any "timeline" the doctors gave them. Besides, there's really only one "timeline" that really counts. That's the 24 hour "timeline" we are given each day. No doctor, no priest or preacher, no friend or relatvie can tell me what tomorrow might bring. What I KNOW for sure is that I am alive TODAY and that is what is important in my life. So what becomes important is how I plan on living today. Tomorrow? Well, I'll figure that one out when I get there! Prayers for you and your father. Dean

Ok, I've taken a couple of days to clear the one brain cell I have left and am now back. I'm not going to write a big disertation on why I had to take that little break. As far as I'm concerned THAT is a pot best left unstirred. Dean

TeeTea, Please let Terry know he is always in my thoughts and prayers. I'm hoping hospice can come up with something to relieve his pain. Being free from pain is an absolute when dealing with this, whether to have the energy to continue the battle or for having the ability to enjoy each moment of whatever time we have left in this world. Dean

It's time to take a break. To tell you the truth I'm more than a little ticked about some of the stuff that's been going on here lately. It seems there are a few folks (and, thankfully, only a few) that have forgotten what the REAL issues are for those of us who have to deal with this disease on a daily basis. I'll answer PM's, e-mails and phone calls. Dean

Some things I've learned about anger: First off a qualifier. I grew up angry. At everybody. You've all read the news stories about the "bullied" kid in school who suddenly snaps and hurts or kills a bunch of his/her classmates? Well, that was me. Except I didn't hurt anybody, then. Instead I turned the anger inward and spent much of the first half of my life trying to kill me. Alcohol, drugs, and the way I lived. Somewhere during that time I started turning the anger outward and started hurting other people. Got a reputation. Got such a reputation that some folks decided I'd be real good at helping them "collect" on unpaid debts. So, for a while, I got PAID to be angry. Such a deal. When I walked away from all that I forgot, at first, to leave the anger there, too. About a year after I sobered up a friend of mine was teasing me about something or other. She stopped in the middle of it and told me that 6 months ago she never would have teased me like that because she would have been afraid I'd come over the table after her ... and she was right. So I know a little about anger. Such as: MY anger is ALWAYS based on fear. ALWAYS! If I want to know why I'm angry about something all I have to do is be honest with myself about what I'm afraid of at the moment. Once I do that THEN I can deal with what is REALLY going on in my life. All anger does is hurt someone. Either I explode outward and hurt someone else or I implode and hurt myself. Anger has never made ANY situation I've been in better, always worse. Anger (and the fear that is behind it) FEELS GOOD! At least for me. Anger and fear produce a drug called adrenalin. Adrenalin is a central nervous system stimulant and a POWERFUL one. Now remember, I'm a drug addict. When I was using I LOVED central nervous system stimulants! Anger can be used to control people. Is there anyone here who has not been controled by someone being angry at them or, on the flip side, as not used anger to try to control the actions of someone else? Finally I've learned I cannot afford anger in my life. Every moment I spend being angry is a moment lost to me. I get angry. I am not perfect. But today, when anger shows it's ugly head, I do everything in my power to get rid of it ... NOW. I look for what I'm afraid of. I do something active (anger is an ACTIVE emotion) to help get rid of the adrenalin in my system. If, in my anger, I hurt someone I make amends and try to get things streight with that person. If, in my anger, I have hurt myself I make those same amends, only to me. We here battle a horrible disease daily. Any energy I spend being angry is energy that I do not have available to use to live my life. When I'm angry I don't see the flowers in my garden. When I'm angry I don't take the time to pet my cats or laugh at their antics. When I'm angry I don't feel the sun or the rain. When I'm angry I don't feel the love from my wife and daughter. When I'm angry all I see, hear or feel is the anger. And that is NOT the way I want to live. Dean

Elaine, I've had the same problem and took the time to talk to a few diaticians about it. Basically the all said the same thing. Anything you can do to get more fruits and veggies into you will help some. A daily multivitamin can help also. EVERY diatician I talked to said to try to stay away from the "energy" suppliments you see on TV adds. They are all about marketing rather than actually doing anything for you. Even the "reptuable" ones are simply packaging the very same things you get in peaches and apricotes and such and selling them for a lot more than you'd pay for the fruit. For me, I've added a TON of fruits and fresh vegies to my diet. I'll let you know how it works out. Dean

Using the energy that anger produces can be very profitable. I've gone off on the VA hospital here in San Diego a couple of different times and, in both cases, got exactly what I wanted out of the deal. But there is a caviat (sp?) that goes along with it. Once you've used the energy to do the things you feel you have to do .... get rid of the anger!!!! My wife is always amazed at how quick I "get over it" when I get mad about something. That's because I've learned, over the years, that if I don't I only hurt myself or those close to me. I also don't play the "what if" game. I've found I loose that one every time. As far as your loved one goes I doubt very seriously there was much change in her condition between the misdiagnosis in September of 03 to February of 04. As you probably know NSCLC is a slow growing cancer so I suspect, unfortunately, that she was stage IV back in September. That does not, in any way, mean you should let the doctors who made that mistake "off the hook". What I AM saying is don't let it eat at you. Do what you feel is necessary, but I think, for right now, that energy could be better spent in the fight you and your loved one are now embarked on. Quality of life vs. Fight with every ounce of energy. THAT is a choice your loved one must make. There ARE options and treatments that have worked for every stage of this disease and the proof of that can be found right here on this board. At the same time there are those of us who have chosen a different road and HAVE concentrated on the quality of life rather than the quantity. There is no "right" or "wrong" answer to this question. It can only be decided by what is in each persons heart. You said you're dealing with two seperate issues and I agree with you. But I would caution you not to let your anger over the mistakes of the doctors get your priorities mixed up. You have a person who you love who is begining the biggest fight of her life. THAT, it seems to me, is the important part. Good luck with all that you are facing. I will be saying a couple extra prayers for you and your loved one. Dean

BJ, Dizziness can be caused by a bunch of different things, even some that have nothing to do with the brain. An inner ear infection can cause it. Best not to jump to any conclusions until all the facts are in, huh? Dean

Shelley, First off ... STOP APOLOGIZING! You don't need to, at least not around here. Second: The lethargic feeling from the meds you're taking should go away after awhile so hang in there and keep taking them, they DO help. Finally: A TON of prayers going out for your sister that whatever they took out of her turns out to be benign. Dean

Happy 21st!!!! And a prayer for at LEAST 21 more! Dean

45 years. What an incredable milestone for and incredable couple! Praying for many, MANY more!!! Dean

Tbone, When I first had my x-rays done due to symptoms of pnuemonia they couldn't actually "see" the cancer either. What alerted them to something other than pnuemonia going on was that a blood vessel in my right upper lung that was supposed to be "here" was actually over "there". In other words it wasn't where it was supposed to be and SOMETHING had to be causing that. Glad you're home and praying for no more trips to the ER for you! Dean

Rich, I, too, hate doctors offices, hospitals and ESPECIALLY the thought of surgery. However, if my dx had been different and they had told me that surgery was an option I would have jumped on the table that very day, bared my chest and told them to "go get that thing!" So let me add a HUGE "ditto" to what Gail said. No matter what comes down the pike in the next few days, weeks and months DO NOT let fear be the deciding factor in whatever decisions you have to make. Dean

As some of you might have noticed I haven't been posting as much as I used to (though I still log on and read messages a couple of times a day). This lack of posting is mainly due to the changes that have been going on with me and my illness lately. A couple of weeks ago I noticed a major drop in my energy level and in my over all body strength. I can no longer do much of the things I used to and, in fact, had to give up driving as of last week (anybody interested in a really nice 1994 Mercury Grand Marquis LS? ). At the same time I started experiencing some pretty nasty bone pain just below my left knee. This necessitated an upage in my pain meds (Vicodan) which lowered my energy level even more and added the ol' "foggy head" syndrom to the list of "things I really don't like about this disease". Add that to the "sick" feeling I get in the evenings and it all pretty much wipes out a good portion of my day as far as actually doing anything is concerned. I still DO have a few hours each day where I'm in fairly good shape and try to get outside as much as I can during those hours. Sometimes I'm just too tired but, so far, I've been able to get out at least every other day, even if it's just a 15 minute "scoot" to the post office and back. So what happens is that when I get on this board I'm often not in a place mentally or physically where I can post much. Either I'm too tired from the day or my mind is in la-la land from the pain meds. I will continue to post as I can as time goes on. I'm taking the time to post this tonight because, for some reason that I don't need to analyze) I'm feeling pretty good this evening. All this is not unexpected and I accept what is happening to my body as just one more step in this journey I'm on. I still take the time (and always will) to notice the new flowers in my garden and laugh at the dumb stuff my two cats can come up with. There's still enough energy to give Gay a hug whenever one is needed (like ALL the time) and to enjoy my new obsession with NYPD Blue (did you know that show is on 3 times a day around here? ... EVERY day?! If I stick around long enough I can catch up on all the old episodes I wasn't able to watch 'cause I worked nights for so long! ). I still cry when I read the sad things that happen here and cheer for the good. Mostly I still live my life as well as I can, one day at a time. As for tomarrow? Well, I'll figure that out when I get there. Dean

Preston, Sorry you had to seek us out, but VERY glad you found us. Sounds like you've got a good treatment plan going. Here's hoping things continue to improve. Dean

Eyup. Been there, done that. X-ray then CT scan then bronchoscophy. And your right, it IS a scary trip. But the nice thing about it is that, with a place like this around, you don't have to do it alone. A couple of things to keep in mind. You don't KNOW it's lung cancer yet. Might turn out to be something else that's not so nasty. That's happened a couple of times in the last few months for some folks who came here absolutely convinced they had LC. Even if it IS lung cancer (now listen close!). A DX OF LUNG CANCER IS NOT A DEATH SENTENCE! Much will depend on what exactly they find. But there are folks right here who have had the worst possible dx and are still alive and kicking many months and even years longer than their doctors thought they would be. Sending a prayer your way. Keep us informed, ok? Dean

Renee, I'm sorry you had to seek us out, but VERY glad you found us. If your husband continues in his decision to not have chemo please let him know that he is not alone in that. There is even a forum here (The Path Less Travelled) for those of us who have chosen that road. What ever your husband's choice may be, know that there are folks here who have walked before him and are ready to be there for him and you. Dean

I also use combivent. I have an inhaler for when I'm out and about and a nebulizer for home use. I've found the nebulizer to be VERY effective. Dean

Shelley, You and I both know that words aren't enough at times like these .. but .. I am absolutely SURE that God doesn't hate you. But go ahead and get mad at Him anyway. He's big enough to handle it. I know this to be true. I've spent many hours telling Him what I thought of Him and how He's running things. Hope: Sometimes "hope" is simply hanging on by the fingertips. If that is what you have to do now ... then do it. Breast Cancer: Your sister is NOT dead yet. Period. End of statement. This is a different disease with different treatment options and a different prognosis. Yes, the experiences you've had seem to lead to one conclusion for this. But guess what? You may just be wrong this time. Finally, since my arms aren't 3000 miles long I gotta do it this way: ((((((Shelley)))))) Dean

Don, Just an off the wall thought, but do you know anybody with a van or even a small motor home you could transport you Mom in? Some way she could lie down on a matress or something and just sleep the trip away? Might make things a bit easier. Dean

A lot of good advice here and yes it IS a hard place to be. Just a thought, but how about comming at it from a different angle? As has been stated here already it may NOT be lung cancer. So maybe suggesting to your Mom that what is going on with her may NOT be so serious now but if she doesn't see someone about it it may just get REAL serious. You know, kinda like a small cut on the arm that, left untreated, could get infected? Comming at it from that direction might help alleviate some of your Mom's fears. Sending a couple extra prayers your way. Dean