DeanCarl Posted February 7, 2004 Share Posted February 7, 2004 I haven't posted much lately, I know. The reasons for that have been numerous. Some simple, some more complicated. First the simple ones. Since last Friday I've been "dealing" with "stuff" almost constantly. From the VA to Social Security to State Disablility to my daughters SSI to what all. Each day seemed to bring on a new crisis that required my presence somewhere other than where I wanted to be, which was at home allowing my body to recuperate from the LAST crisis. If I'm "out and about" more than an hour or so my legs HURT. And even if I do stay home and rest I'm often very tired by the end of the day. I had been posting mostly in the mornings, but that time was being taken up "dealing" and by the time I got done with that I was too worn out to do much of anything, even type on the computer. I'd aslo started 3 new medicaitons for various things and, as usually happens, I got hammered a bit by the side effects. As a recovering addict I find I'm VERY sensitive to medications. So much for the simple reasons. More complicated are the emotional reasons I haven't felt much like posting. To put it as simply as I can ... I got burnt out on the emotional asspects of this disease. I think many of you have noticed I'm a bit of an empath. As I read your messages I rode that emotional roller coaster with you all. Incredable pain and loss, incredable joy and hope. Back and forth and back and forth. While being an empath allows me to do some of the things I do, it is a double edged sword. I have to make sure I ballance the intensity with other, more relaxing times and places. One of those "places" is my art. I display my art on various "artist community" web sites and participate in discussion forums and such. The same day I realized I needed a break from the strong emotions this disease brings forth I logged on to one of those sites only to find that one of the folks I'd "known" since I started doing computer art and had helped me out quite a bit when I first started was dying ... of cancer. He passed away a couple of days later. It was like I could not get away from it no matter what I did. That started a downward spiral in my emotions that lasted 4 or 5 days. Now, it is in my character to pull inside myself whenever I'm not feeling well physically or emotionally. Maybe not the best way to go, but it's almost like I'm "hard wired" that way. I get quiet for awhile and then am willing to talk about whatever is going on with me. I finally reached that point today. So I logged on to the board and posted a couple of replies ... and then saw Fay's message. Now Fay, I KNOW your message was not directed at me. I know it was a response to someone indicating YOU should take the path *I* have chosen. And I AGREE with all that you had to say. Withholding ANY kind of treatment for someone because of their choices is, in my opinion, a crime ... period. And yes, I think we are much alike. Both of us are willing to fight for what we think is right and do not allow ourselves to be intimidated. But as I read that message and some of the responses that followed I could not help but notice some of the words and phrases that were used in referance to those of us who have chosen "the path less travelled". Words like "go softly into the good night", "quit", "throw it away" and others. Words that indicated to me an attitude. An attitude that seemed to say I, and others like me, are some how "less" than those who choose to fight every day, every hour, every minute to beat this horrible disease. I do not wish to offend. But I DO wish to be understood. I have made my choice based on what I've been able to learn about this disease *I* have, added to what I know about my life's situation and what is in my heart. I am going to die from this illness, probably within the next few months. But I am NOT "going softly into the night". Nor have I given up on LIFE. And I've thrown away nothing! I hold every preciouse moment close to my heart. I fill each moment with as much as my physical situation will allow. I've said it before .. this disease will kill me, it will NEVER beat me. As I said, I do not wish to offend. I do understand that no malice was ment by those who "spoke" those words. But I hope that folks come to understand that words can sometimes affect others in ways we often to not intend. As the only really "active" member here who has chosen this road I'm on I've always felt a little "outside" from the rest of you. And, for awhile today. I felt even less a part of this place than I had in the past few months. Not a good feeling. Dean Quote Link to comment Share on other sites More sharing options...
Debbie2003 Posted February 7, 2004 Share Posted February 7, 2004 I am a true "outsider" myself since my nodule turned out to be inflamation not cancer (so far?) but I wanted to say that Dean it's so important for you to do what is best for you. And if coming to the board reading certain things puts stress or negative feelings on your body, then it was smart of you to avoid it for a while. Having said that though, you are definately not in anyway an outsider here. You are a main part of the group. And your choice of treatment is a valid one with some studies backing it up so I hope you never feel judged. I know people who wished they would have done the same thing. Everyone has to make their own choices and no one knows which choice is right. But the only choice everyone can agree on is living each day to the fullest. Good luck and keep the positive thoughts flowing. Quote Link to comment Share on other sites More sharing options...
karenl Posted February 7, 2004 Share Posted February 7, 2004 Dean I have stopped and started and deleted this post so many times!! I just cannot find the words to say what I want to say! But the bottom line is that no one gives more of themselves on this board than you do. It hurts to read that you don't feel part of this group, because, to me, you personify this group and everything it stands for. I hope that you find peace and joy on the rest of your journey, and that you find some of that peace and joy here, with your friends. Karen Quote Link to comment Share on other sites More sharing options...
Karen Posted February 7, 2004 Share Posted February 7, 2004 Dean, I just want to say that I think you are an AMAZING person. I have seen that empathy of which you wrote in your posts. You are an angel of a man, yet, sometimes angels need their moments to rest and refresh. Wishing you a much better week. Less "dealing" and more precious moments is what I am praying for you. God bless~ Karen M. Quote Link to comment Share on other sites More sharing options...
TBone Posted February 7, 2004 Share Posted February 7, 2004 Hi Dean, I am getting ready to leave MD Anderson to fly back home in a couple of hours.My wife and sisters made this trip with me.We have been talking a whole bunch about what this message board has done for us and if you feel like an outsider I wish you could have heard our discussions.We all run to your posts.It takes a tremendous amount of courage to face this animal no matter what avenue one decides to take in the fight.We are all fighters even if we don't decide to do certain things.A lot of the courage that I muster comes directly from you.And from Fay as well.I love you both so much.I cannot wait to log on when I wake up.I really can't describe in words what this brotherhood has done for me and I am so glad that it is here for my family as well.I can't wait til you post a photo on your scooter.I will post again when I get home about my trip out here.There is no big news for me.I am faced with some of the decisions that we all are.Basically making life more comfortable and enjoying what I have left.I plan on being here for a while.And I plan on you being here to talk to as well.Take care.Have a blessed day.And I am praying hard for us all.TBone Quote Link to comment Share on other sites More sharing options...
David A Posted February 7, 2004 Share Posted February 7, 2004 Dean, I have respected your dicision for your life from the momernt I met you and consider you a very important member of this group, believe me after my 1st round of gemzar this time around, I too considered the same thing it was throughly *ss-kicking for me. You and I will all we be brother anyways with our recovery from addictions. Take care friend. DavidA Quote Link to comment Share on other sites More sharing options...
gerbil runner Posted February 7, 2004 Share Posted February 7, 2004 Dean, I sure hope you don't feel like your decision is looked down upon in any way. There is no "right" or "wrong" answer in how/whether to fight a disease like this, there is only YOUR answer - the answer of the one battling the disease. I hope your life gets less complicated. Nobody needs all the BS you've been dealing with lately. Quote Link to comment Share on other sites More sharing options...
Pam Posted February 7, 2004 Share Posted February 7, 2004 Dean - I want you to know that I often times wish my dad had taken the path you chose, because we could have had more *quality* time with him He may have extended his life a little while extra because of treatment, but it wasn't quality time at all. Too sick and tired from chemo and radiation, etc. You are the bravest man I know,and I know a whole lot of us come here and search for your posts, you have touched the lives of so many. I have the utmost respect and admiration for you. You have the courage to look this thing in the eye and spit in it! Hoping you "recharge your batteries" soon - and looking forward to many more posts from you! Much love to you and Gay, Quote Link to comment Share on other sites More sharing options...
lilyjohn Posted February 7, 2004 Share Posted February 7, 2004 At first I thought that I would PM you with my message. I often feel that my views are seen as radical and cause people to feel uneasy. I have decided that what I have to say is my opinion and I have the right to say what I feel and continue to post both my feelings and beliefs. I do not have lung cancer. I say that because I have not been diagnosed with that disease. The posibility that I will someday is very strong. I lost my mother to lung cancer and smoked for many years. Just because I do not have the disease at this time does not mean that I haven't felt it or lived with it. While dealing with Johnny's disease as well as my mother"s I saw most of the attitudes that Fay speaks of. I believe beyond a doubt that the attitude of both the doctors and the general public goes a long way toward making lung cancer a fatal disease instead of a chronic one. I also saw how patient's rights are ignored. I have said before and will say it again. It is your body, your life and your choice. No one has the right to fault you or anyone else who chooses to not actively fight this disease with aggresive treatment any more than they have the right to fault the ones who do choose to fight it. Because you are not using many of the treatments available does NOT mean that you have given up or are not fighting. In many ways you are fighting harder than most. I respect your decison and above all your right to make that decision. You are certainly not going "quietly into the night". I seriously doubt that you have ever done anything quietly in your life. Why start now? It takes a lot of courage to make the decision that you have made and even more to stick with it. Your posts are both supportive and compassionate to those who have chosen to take the oposite route and those who are still in the process of deciding or learning what is availabe to them.. Never doubt your importance to this group or any other. Your wisdom and insight are remarkable and welcome. I find your posts inspiring and touching. As for the attitude that Fay speaks of I can understand her frustrations because many of those things led directly to Johnny's death. He chose to fight his disease but the option was taken out of his hands and his rights were denied. Not only denied but abused. Because of that my main concern is that no matter what choice a person makes their wishes should be the only ones condidered. Your quality of life is your business and you are the only one who knows what that quality is. Johnny knew that dispite his disease his quality of life was the best it had ever been. It is all in the perspective of the one who is living that life. No one else has the right to make that judgement. When I first started visiting lung cancer message boards I posted the paper that I wrote "It's time for a change". I got many interesting and informative letters. One I recieved was from a man fighting lung cancer. He told me that his doctor had told him that there was nothing more that he could do for him. He was told to go home and get his affairs in order. He had about three months to live. Once out of the hands of the doctors he took matters into his own hands. All of the things that he had wanted to try that his doctors had told him would not only not help but cause him harm he decided to try. If there was no hope what could it cost him. The letter that he wrote to me was written six years after his doctor sent him home to die. The bottom line is that God and God alone knows and decides when it is our time to go.How we travel the road until then is our choice and can only be decided by us. Like you I tend to speak my mind and from my heart. I say what I feel and hope that people understand. If not that is not for me to worry about. I have too many other things that I have to be concerned about. I may not have cancer in my body but I have it in my mind and in my heart. Everyday of my life I fight it's effects on my life. Often times coming to these boards leave me sad, upset or even feeling hopeless. I support and care for everyone here. I wish that everyone of you could have a long and fulfilling life without cancer. I pray everyday for a cure. Am I upset because my Johnny died so soon and did not have the chance that others do to fight for his life? Your damned right I am and I am sure that I am not alone in those feelings. Maybe I am just too open in admitting what I feel. If so and someone takes offence then I am sorry. It is just my nature like yours to be honest about what I feel. I can be no other way.. You my friend are deeply loved respected and above all needed. Keep your chin up and do whatever it takes to make your life easy. We are here for you as you have been here for us. Bless you and your family. You still have a lot of fight left in you and in many ways it is taking more to fight the things that you fight than anyone else can imagine. Lillian Quote Link to comment Share on other sites More sharing options...
Don Wood Posted February 7, 2004 Share Posted February 7, 2004 Dean, I have no problem with your choices, and support you wholeheartedly. I have said here many times the survivor ultimately has to call his/her own shots and we have to be supportive of that. Don Quote Link to comment Share on other sites More sharing options...
cathy Posted February 7, 2004 Share Posted February 7, 2004 Dear Dean, You know how I feel. I am not sure if you remember, when you first joined lcsc I told you that I wish we didnt talk my dad into treatment, because he really didnt want any treatment, any way thats besides the point..Everyone has to do what is right for them and you chose the path that is best for you, I know everyone here supports you, you have been an inspiration to many.. . I am glad that you told us how you felt, because I think you will see no disrespect was meant towards your decision on how you wish to fight this monster... I hope you know I admire you, and completely support you... Quote Link to comment Share on other sites More sharing options...
teresag Posted February 7, 2004 Share Posted February 7, 2004 Dean, the path you've chosen is your own. No one can make these choices for you, and I truly believe that the people here understand that implicitly, even if they do occasionally voice an opinion that seems to the contrary. For some people, "the fight" is a mission, a way to find purpose, a purpose that gives them added strength. And I respect that. It can be difficult for some people to accept a viewpoint such as yours, of acceptance of your fate, of aiming to maximize your quality of life in the precious time you have left. But acceptance is just another way of coping with the problems so many people here face, isn't it? You look, from where I sit, like a man whose acceptance is working very well for him and his family. And if it works, don't mess with it, I say. My father made the same choice you did. The dr. told him and my Mom that he would die of this disease. They offered him palliative radiation & he declined. We had him for another five precious, wonderful months, after which he died a truly beautiful death. So, I guess my message is that you are accepted here, and everyone else's way of deaing with this challenge is also. No one can make these agonizing decisions for the person with lung cancer. We can only support people like you, Fay and everyone else. May God shower his blessings on you! Quote Link to comment Share on other sites More sharing options...
Fay A. Posted February 7, 2004 Share Posted February 7, 2004 Dean, I want to be understood, too. My post wasn't directed towards you. (Or our co-member, Z--Pacific, or anyone else who is chosing not to have treatment). And my comment about going QUIETLY into that good night had to do with the folks I'm dealing with who view my bringing symptoms to their attention as 'noise' I should keep to myself, because I have "...lung cancer and what does she expect? She should just let the disease run it's course." There are people out there who admire those who "...never complain...", but the cost to those who never complain can be suffering in silence. I do not want anyone to suffer...and that includes me! The folks I was referring to have no business interjecting their opinions into the equation. They have no right to sit in judgement of what I should or should not be willing to tolerate because I have Stage IV Lung Cancer. (things like severe pain, chronic infection, inability to sleep, inability to eat, profound weakness, the list goes on). I'm not implying your stance to be somehow less than my own. I would not do that. I don't know you well enough to be privy to all that has gone into the making of your decision. I made a mistake like that once years ago, but I learn from my mistakes, especially when my response could cause hurt feelings. I don't go out of my way to cause anyone distress. I'm a bit of an empath, too. Your choices have nothing to do with mine and vice versa, but there is a body of opinion out there that is pushing for people like me to do as you have chosen, and I reject that. I reject if for myself and for anyone else who does not want to do that. Because I reject it I am coming under fire. And as far as those of you who wish your family members had not undergone treatment because you believe they would have had a better quality of life until their deaths (less sickness, more strength, etc.) I would like to suggest to you that you not second guess your loved one's decisions. It was their life at risk, and maybe the act of fighting for it was of comfort to them. But also I would suggest to you that you do some real research into the physical consequences of late stage Lung Cancer (or any cancer), that is allowed to progress unchecked. I could be pretty graphic with my descriptions. I lost my Mother, her sister, and their brothers to Lung Cancer. Some chose the treatments that were available at the time, but some chose no treatment at all. The two who chose no treatment had just as rough a time of it as those who underwent treatment. I've since learned that what they experienced is not uncommon. I hope that you can all take comfort in knowing that you supported your loved one in whatever way they chose to live with and die from this disease. If you were able to do that you've done a great thing as a human being. There was a heck of a lot that occurred in the past 3 1/2 weeks that led up to my reality check rant...very little of it having to do with anything said on this message board. Let me give you an example, and then let me know how you would have felt about this: I have an alleged benign brain tumor. In the Fall of 2002 it was reported as being 1 cm (aka 10 mm) at it's widest. In the Spring of 2003 it was reported as 15 mm (aka 1.5 cm) at it's widest. Benign brain tumors do not respond to chemo. Malignant brain tumors MAY respond to chemo (brain mets interfere with and compromise the integrity of the blood brain barrier. Can't quote the source, but you folks can do a search on PubMed, Medscape, MedLine, what ever to obtain peer reviewed documentation if you want to check it out). So the report in January of 2004-after 6 rounds of chemo- reads 1cm at it's widest, stable tumor. Okay, that's a difference of 5mm (half a centimeter). And that might mean the tumor is malignant and not benign. So I ask the Onc about this and she agrees, this needs to be investigated. I bring in my copies of the films and reports to the the radiologist who read the January scan and he does take the time to put up the films and make the measurements with me present...and the tumor was 14 mm at it's widest point on the January 2004 scan. WHY was it reported then as a stable 1 cm mass.... a difference of 1mm can be a result of using a different machine, taking the scan at a different slice, but 4mm is not a machine or resolution distortion. It's under reporting of almost half a centimeter. I'm standing there having to defend WHY very specific measurements are required. My treatment decisions DEPEND upon accurate scan information. And this was one of the easiest to resolve issues of the past 3 1/2 weeks. Plus the people in my world who are intent upon insisting that I follow some crack pot time table for the "stages of terminal illness". They think I should be grieving the end of my life. What a waste of my precious time....Look, in my book there is 1. Alive...that means I have a life. So I'm going to live it. I'm not going to sit around and meditate on it, unless I just happen to feel like meditating. 2. Dead....which is self explanatory. I am not going to give up without a fight just to make it easier on someone else. This is the one time in my entire life where I get to be totally selfish. And I'm not going to be made to feel guilty for that. Anyway, I'm sorry that what I had to say caused you to feel as an outsider. You aren't. You're a member in good standing of a club that NONE of us wants to belong to. Dean, you know and I know that a day will come when I chose to no longer actively seek treatment. (unless I manage to survive long enough for some superbrain to actually discover a cure, or I'm hit by a car.). So, my friend, I am sincere when I say that I respect your right to make the choice you've made, because I KNOW someday I will make the same choice. Don't know if it will be because of the cancer, or because of the genetic kidney and liver disease, or the brain tumor, but something will bring me to your side of the fence at some point. The key here is your choice is accepted because your choice goes along with what our current culture sees as the most cost effective (fiscally, mentally, emotionally) way to deal with Lung Cancer. I want the same respect for my choices. And I'm not getting it without a fight. I'm having to fight for everything, and I shouldn't have to do that. I wish I didn't have to do it. I should be able to declare my intentions at the time of diagnosis, and that should be that, until such time as I decide to change my plans. I have spent hours of my time every day for the past month dealing with people who I should not have to push to do their jobs, when what I really wanted to do was paint, or write, or plant, or read, spend time with those I love, you get the idea.... So I lost it....and the truth is I'm not THROUGH losing it. I'm walking an emotional tightrope right now... I'm not going to re read what I've written...I'm emotionally shot. I think if I reread it I'll delete it. So for once in my life I'm not going to agonize over what I'm about to say (well, maybe a little). I'm going to tell you all that I do not intend to hurt anyone. Let the chips fall where they may. Quote Link to comment Share on other sites More sharing options...
Lisa O Posted February 7, 2004 Share Posted February 7, 2004 Dearest DeanCarl and Fay, You both fight so hard for a right fundamental to all of us -- the right to choose which, if any, treatment is best for us PERSONALLY. It seems there is so much judgment from the medical community, from family and I guess even from each other that we have begun to feel the need to justify our approach. When it comes down to it, Fay and DeanCarl both stand for the same thing -- EMPOWERMENT-- our right to choose the terms of our fight and within our means the right to choose our weapons. I believe that both of them are an inspiration and an asset to this community. Quote Link to comment Share on other sites More sharing options...
judysdaughter Posted February 7, 2004 Share Posted February 7, 2004 I dont' know that I have ever responded to one of your posts, but I certainly do know who you are. I agree with previous responses that no one can assert "what is best for someone" except for the person going through this disease. When my mom first got diagnosed with cancer I prayed to God to give us His grace to accept His will (whatever that might be). I certainly had my hopes, full recovery and pain free but I knew it would be a battle. As I talked to people, I would be somewhat upset about the assertion that "she will survive." It wasn't that I didn't want her to, it's just that I knew it was somewhat out of our hands. People would tell me that they would pray for her cure. I appreciated the prayers but felt frustrated. What if she doesn't get better??? What if she suffers???? I just wanted God to help us with whatever the outcome. When David W first got on this board, he would reply with I'll pray for what is best. We pm'd each other and he was worried that people may not respond well to praying for something that didn't involve recovery. I've attached another pm that I received from David W well before his death which sums it up best. (I couldn't figure out how to attach a quote) David W To: judysdaughter Posted: Tue Sep 30, 2003 10:24 am Subject: Re: Just wanted to say.. I once asked God that my friend would live after a terrible fall. I got exactly what I asked for but, my friend was angry, loud and mean after recovery. When I told my pastor the story his responce was,"you got exactly what you asked for." He taught me to ask God for what is best for someone and to avoid inflicting our will. Thank you and God Bless, Dave, No one knows what is in the plan. All we can do is listen to our own consciences and proceed accordingly and hope that we are hearing God's words in our hearts. I don't believe anyone on this board would ever mean to make anyone else feel bad. We all have our different views. What is shameful to me is that some people's choices are limited by the medical community and/or economics to manager their own life and treatment options. God bless you Dean Carl and everyone else here on this board. May we all find God's grace and strength. Quote Link to comment Share on other sites More sharing options...
Z_Pacific Posted February 7, 2004 Share Posted February 7, 2004 Hi Dean, I was going to send you a PM on your posting but decided that I should share my thoughts on what you have said. FIRST OF ALL - MY GOSH Dean - just reading all the responses you have gotten would wear anyone out. AND what’s this about you being the only one who has opted against treatment. I may not be such an “active” participant but I am right there with you just a little behind. My wife tells me that I am spending too much time on this site and it only depresses me – which it does sometimes. I do however find a great deal strength and inspiration from the love and compassion offered to those who are fighting our common enemy in their own ways. As you first advised me, I take it one day at a time and try and get the most from it. When I become depressed (which is happening more often) I try to focus on what is good in my life and consider it a small victory in overcoming the depression. I keep telling myself this disease is not going to break my spirit, for that spirit is the only weapon I have to fight on. You have undoubtedly been through a lot lately but should consider it a victory that you are back with us. Every time you face a difficult time consider it a victory that you have looked it in the eye and continue on. Every time you wake up in the morning giving you another day is a victory and it’s the sum of the small victories that keeps us going. I am not sure how much sand is left in my hourglass but I am going to get the most out of each grain that falls. My prayers are with you and God Bless, Howard Quote Link to comment Share on other sites More sharing options...
judysdaughter Posted February 7, 2004 Share Posted February 7, 2004 Fay, I don't think Dean Carl would want you to anguish any more that you would've wanted him to anguish. Jenny Quote Link to comment Share on other sites More sharing options...
stephnewyork34 Posted February 8, 2004 Share Posted February 8, 2004 Hi Dean Carl, I am not sure if I have ever responded to one of your posts, but I have to say that I think you are amazing and I think that it takes tremendous courage to not take treatment, when Mom (JudyB) first got sick we talked about that "If" the worst case scenario were to happen, and I think that it is better to live your life to the fullest even if it is shorter, why be sick etc? I just hope that if I am ever faced with this myself that I will have even half of the courage that you do. . .you inspre me, On the other hand, I see why soe people want to fight, either way it is the choice of the person going through it. I am not sick, so I can't even pretend to understand how you must be feeling, all I can do is try . Also I ften feel like an outsider because I am not sick and it is my Mom who is, but I know that it not the case, and I love this board and couldn't handle this w/out it. The roller coaster sucks, and I totally know what you mean about having empathy and caring and it is so hard sometimes when we see what our new friends and family are also going through. This is why I watch bad TV like Friends, and shows like that, action films and soaps to get my min doff of it. I have had the occasional time when I thin I can't listen to anymore of this because it is so hard, and I can't imagine how much harder it must be for you. Anyhow I just motsly wanted to say that it is greta that you let us know where you have been and I am glad that you are okay, but I hope is well with all the dilemas that you spoke of and I hope you are taking care of yourself. Big hugs Quote Link to comment Share on other sites More sharing options...
DeanCarl Posted February 8, 2004 Author Share Posted February 8, 2004 Thanks folks. There are often times when I feel "not a part of". I see I was mistaken. Thank you. And a special "thank you" to you Fay. Your reply shows me we are actually fighting for the same thing. Respect. Each of us has a clear idea of what is "right" for us and each of us is unwilling to back down from that. And each of us had a couple of weeks where it seemed like we had daily battles with folks WE SHOULDN'T HAVE TO BATTLE WITH! Hey ... I got an idea. You and I live fairly close to each other. Let's get our medical stuff done at a place halfway in between and then set up our appointments AT THE SAME TIME! It may not get much changed as far as the attitude toward this disease goes ... but it could be fun to watch those joker's reactions after the second week or so. "Oh, no .... here THEY come again!" On a more serious note: This has all proven one thing. There needs to be an across the board change in the attitude toward this illness. There needs to come a time when a cancer patient, no matter what "brand" of this disease they have, can have access to ALL he or she needs no matter what his/her choice of treatment might be. And that change in attitude needs to start here with us. WE are the folks that KNOW what this disease does. Doctors may know the biological part of this illness. They may know how the disease grows and spreads and how it affects the body. "Society" may know facts and figures they are told in the newspaper and on TV. But they do NOT know what it's like to LIVE with this disease, day in and day out. WE do. So it's up to us to make those changes. First in ourselves, then in those around us. I truely believe this can be done. If nothing else I hope this has opened up a dialog concerning the attitudes WE have toward this illness. Dean Quote Link to comment Share on other sites More sharing options...
sharyn Posted February 9, 2004 Share Posted February 9, 2004 Dear Dean Carl and Fay - I read both your posts and although I have no "enlightening words" to share... I think it is important to say thank you to both of you for all you have taught me personally. You my friends have made a difference and for that I am eternally grateful. Peace to both of you... Much Love, Sharon Quote Link to comment Share on other sites More sharing options...
Snowflake Posted February 9, 2004 Share Posted February 9, 2004 Dean and Fay, I would like you both to know that you are heroes of mine for SO many reasons. (Ahem, ladies first...) Fay, you give so much of who you are, sharing your experiences with those new to treatments. You give all a "reference point" - not only do you say "That's not right", you give examples of how to fix it, other options of what "symptoms" may be and share an overall wisdom of life. So far, you've taken on everything that has been thrown your way, and LOOK, you're still here! How awesome is that? Dean, you also give a lot. You have the BIGGEST shoulders I have ever seen for someone in a crying mood, yet you are not one to shy away from a boot in the *ss if someone really needs it. I admire how you have chosen to ride this ride, as in some ways, your choice takes far more courage. I have to admit, I'm scared to die and here you are, facing it head on and getting on with life. And so, for both of you, I hope that you get what you need and deserve for being so loving and giving to people that you have no physical connection to, 'just' the touching of souls. Amazing how angels manifest themselves... I love you both, Becky Quote Link to comment Share on other sites More sharing options...
Angie Daughter of Bill Posted February 9, 2004 Share Posted February 9, 2004 Snowflake..........I couldn't have said it better! For two days I have been trying to respond to this post, but couldn't seem to find the words. I have seen both sides.........I had an uncle with a brain tumor. He tried EVERYTHING possible. He flew from Alabama to Duke University Hospital on a regular basis. He was involved in a clinical trial, etc. I know it took tremendous courage to do these things. On the other hand, my Dad is leaning more towards DeanCarl's view....my Dad wants to spend his time doing what HE wants to do........not going to some type Dr's appointment several days a week. This decision also takes tremendous courage!! Whatever a lung cancer patient decides, they need support. I offer that to any of you! (Truly I do) I am praying daily for everyone here, but if there is something more that I can do, please get in touch with me. Blessing to everyone! Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted February 9, 2004 Share Posted February 9, 2004 My Dear and Beloved Friends DeanCarl and Fay, Becky said it best, but I'll reiterate. I love you both, for your empathy, and the guts it takes to not crawl whimpering under the bed -- The last part is for all of us who get hit with CANCER and empower ourselves to deal with it, however we come to terms with that. We all hit lows in the roller coaster where the emotional end of everyone's disease becomes too much, and we lie low for a bit, until we recover our strength. I too feel like an outsider at times, because I have a "clean bill" to date. Maybe because I had extra medical attention, being an NIH employee. I do admire strength of character, and the ability to share and uplift others, which I see as part of the deal when one has cancer -- to support fellow cancer ites. You both are heroes to me in that regard. I am sorry the outside world is so lousy sometimes, I wish I could fix it for you. I wish I could fix it for me, and for all of us. As long as we don't bow down and let the disease become empowered over us, we win, no matter how long our tenure here is, or under what terms it is. I truly believe that. The main reason I will chose to fight if my remission fails this time is I have children to raise, and I'm not finished yet. I have a duty to them to try and hang around, so I'll do that. I have no fear of death, or of dying, but I do know there is a finite amount of times I can fight that big fight and keep going. But, I am empowered with CHOICE. If there is anyone on this board who is pressuring or criticizing either of you for the decisions you have made, I'd like to see them go through me first rather than hurt either one of you. I'd fight to the last bit of my being to defend your right to live in peace in your own fashion. Again, louder, incase you didn't hear me the first time, I love you both, and you are my heroes Screw the rest of em, they don't rate anyway. God bless and keep us all, XOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
SandyS Posted February 10, 2004 Share Posted February 10, 2004 Gee - I feel stupid. I emphasized with Fay's post and posted my comments, never ONCE thinking about Dean. I know that sounds awful, but actually it shows how much it doesn't matter to me WHICH path ANYONE chooses, and that I don't think of Dean as any different than the rest of us. We're ALL fighting the same horrible disease. And we can all only choose what is right for us......love ya ALL! Hugs and prayers, SandyS Quote Link to comment Share on other sites More sharing options...
BeckyCW Posted February 10, 2004 Share Posted February 10, 2004 Dean and Fay and everyone else who posted here... I just wanted to say how much I respect you all for your choices and for speaking your mind, standing up for what you need to do for YOU. I have learned so much from all of you, and I think you are all pretty incredible people. I especially appreciate how much everyone here really cares for each other, whether or not they approach the big things the same way. You're all in my heart to stay. BeckyCW Quote Link to comment Share on other sites More sharing options...
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