DeanCarl Posted November 20, 2003 Share Posted November 20, 2003 ... and the consultations all held. And I FINALY got some real, upfront information on what I'm dealing with. My cancer is, basicaly, inoperable and, probably, incurable (though we'll see about that last one ). I realize now that part of the problem with someone just comming out and saying that in the first place was that, up until Tuesday, I was dealing with young doctors ("fellows" in the terms of the VA system) who hadn't been in the field that long. It's got to be hard for any doctor to sit facing a patient and tell him he has less than a 5 percent chance of being alive a couple of years from now. And especialy hard for a younger doctor. Tuesday, on the other hand, I sat down with a doctor who's been working in this field since 1976 (and is actualy working at the UCSD cancer center and doing VA work a coupld of days a week) and while he was not in any way callous or hard hearted about it, he WAS willing to lay it out in front of me. I appreciated that a bunch! Anyway, at this time I am not a candidate for surgery. This disease was just caught too late for that. There is a lot of involvment in the lymph nodes in between the lungs and the surgon was honest enough to say they just couldn't get it all if they operated. There is, apparently, an over 90 percent chance the cancer has already micrometastisized to other areas but it's just too small yet to be detected. Chemo is not a good option at this point either. This is due (according to that experienced doctor) to my rapid weight loss and fatigue symptoms. His experience is that agressive chemo in patients with my symptoms do not respond well to agressive chemo treatments and end up causing their bodies a lot of pain and distress for very little results. There is, however, one way to go with this. I'm going to start a "fractionalized" radiation treatment. I will recieve five days of radiation followed by a break (I think he said 2 weeks) then five more days. Two goals with this. There is a chance, albeit a slight one, that the radiation can knock some of the lymph nodes down, reduce the tumor AND help restore some of my strength and stamina. This would then make me eligible for more agressive therapy. Even if the radiation doesn't help qualify me for other treatments it WILL help with my "quality of life", again by helping to restore some of my strength and stamina. As a former firefighter (in the Navy and, before that, in the forests of Washington State) I understand the idea of fighting this disease from the "outside in". And that seems to be the way to go with this, at least for now. Hmmmm.... I have some things to say about my attitude toward all this (I think it's a good one), but this is getting abit long so I'll save that for another message. Dean Quote Link to comment Share on other sites More sharing options...
Fay A. Posted November 20, 2003 Share Posted November 20, 2003 Dean, Did they do a PET scan as part of your workup? Quote Link to comment Share on other sites More sharing options...
Margaret Posted November 20, 2003 Share Posted November 20, 2003 Dean, I'm glad you now know your course of action...guess it's always good to have a plan! Don't ever worry about writing too much...it is interesting to all of us how each of us deals with every stage we have to go through. I am praying this will improve your overall condition and that you will feel stronger, so that you can take whatever next step is available. This is such an individual disease that it is very good that everything about you is being taken into account. Peace and blessings, Margaret Quote Link to comment Share on other sites More sharing options...
DeanCarl Posted November 20, 2003 Author Share Posted November 20, 2003 Fay, One of the things ALL the doctors I talked to agreed on is that a PET scan wouldn't help much right now. Something about the location of the lymph nodes involved and the low resolution of the PET scan itself. There was some talk of doing a mediascinoschopy (sp?), but that's been put on hold until we see how the radiation treatments work. Margaret (that was my Mom's name by the way. Spelled the same way, too! ), Yea, someone finaly listened to ALL my symptoms rather than just looking at the test results. It was nice. And yes, I'm a bit of a blabbermouth. I like to talk. And since I'm an egotistical blabbermouth the thing I like to talk most about is me! (becomes a bit boreing to the folks around me at times ). As for my attitude: I'm one of those folks of whom it is said "he's lived a full life". Though not that old (53) I've packed a TON of living into those years. I didn't design it that way, I just got lucky. I'm one of those extremely lucky folks who's had the chance to make a difference in other peoples lives (I worked for many years with developmentaly disabled kids). I've had the chance to travel all over this country (many times by motorcycle) and have seen the wonderful beauty of this land. I've seen half the world in my travels (mostly the far east) and spent time with so many different and wonderful people. At one point in my life I went from living on the streets of San Diego for 4 years to being cosidered one of the best at what I did just a couple years later. And, best of all, for the last 19 years I've had the good fortune of loving, and being loved by, the most gentle, loving and couragous of people .. my wife, Gay. As for the statistics about my disease. I'm a recovering alcoholic/addict. Dual addicted. You think the stats are nasty for cancer? You oughta see the numbers for that! Yet I'll be clean and sober for 24 years in two days. So as far as this illness goes: I hope to be one of the folks that pushes that 2 percent survival rate up a bit. But I'm not going to spend a lot of time worrying about it. There's too much else to do! There's too many good books that need to be read. Too many good songs that I want to hear. Too many sunrises that need to be seen. Too many friends I want to spend time over coffee with. There is a rose bush in our yard that is growing wild. It puts out HUGE pink blossems and I can't wait to see what the next one is going to look like. I'm a computer artist and there are a ton of pictures in my head I want to get done. And most of all there's a BUNCH of loving my wife that I want to do. THOSE are the things I'm going to concentrate my energies on for however long I have left. See? I TOLD you I was a blabbermouth! Dean Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted November 20, 2003 Share Posted November 20, 2003 Dean, I was told when I started this journey that attitude played a large part in a persons recovery. I am a firm believer in that! I have seen people who have been dx'd just give up and it wasn't long till they were dead. Me on the other hand, I am fighting all the way because as you said, there is to much living to be done to give up now! I am also a firm believer in God helping us get through each day of this battle and of his leading us to do what we need to do to fight it. Prayers and best wishes to you and your Dr's. God Bless. Quote Link to comment Share on other sites More sharing options...
Ry Posted November 20, 2003 Share Posted November 20, 2003 Boy do I like you. I am sorry you have to be here, but I am going to really enjoy reading your posts. We have something in common besides cancer as I work with the developmentally disabled also. Oh, and I think I had that same Volkswagon beetle you talk about in your other post. I think you will see a great response from the radiation, however, I think I might seek a 2nd opinion on chemo if I were you. Take care. Quote Link to comment Share on other sites More sharing options...
karen335 Posted November 20, 2003 Share Posted November 20, 2003 Dean, I agree with Fay about the PET scan. You really should have this done, I would insist on it. I did with my doctor. I went to UCLA for a 2nd opinion and they said I should have it done. When I came back to my onc, it wasn't a week and she had me scheduled for one. Some times they don't want to do tests because of the cost. It helps, in my opinion to let them know that you have gotten another opinion. It keeps them on their toes and aware that you are consulting with another doctor for treatment. Use all the tests possible to you and get that 2nd opinion. How are you feeling? Have you started to gain back your weight? Drink insure or boost a couple of times a day to gain your weight back. Have you inquired about RFA treatment or Brachy treatment, since the tumor is blocking the airway. How large is the tumor? If you want to pm me, I can give you more info. Praying for you and Gay. God Bless Karen Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted November 20, 2003 Share Posted November 20, 2003 Hey Dean? By the time I was diagnosed,I had hit the "lose a bunch of weight real fast" stage, plus I was anemic. I had also perforated my colon and wound up with a bag. I was transfused twice, and fed IV with that nasty stuff for about ten days post surgery in the hospital. Then they turned me loose with the promise that I had to EAT and REST, since I was 'young' enough they were going to do chemo (I was 43) in 2 weeks and how well I lasted through it depended a lot on nutritional status. Your attitude is great. If your weight stabilizes and your nutrtional status is good, and you have energy and strength enough, I would bet you could find a second opinion doctor that would say you should go try the chemo. I don't really understand the first doctor. How could the chemo be worse than the alternative? At least give it a shot. You, dear, are a champion. Chemo or no. I'm going to put you on my wall of heroes, and say I'm glad to "know" you. It's an honor to have met you, and I'm sorry about this da^^ disease. God bless and keep you. MaryAnn Quote Link to comment Share on other sites More sharing options...
Don Wood Posted November 20, 2003 Share Posted November 20, 2003 Hi, Dean. Hang in there with the rest of us. Sounds like you have the fighting spirit that it takes. Good luck. Don Quote Link to comment Share on other sites More sharing options...
donaf Posted November 21, 2003 Share Posted November 21, 2003 Dean: You are such an inspiration! You have a great attitude and I know this will help you tremendously. I hope that your positive outlook will be contagious and help a lot of us who turn to this board to obtain information and find encouragement. My brother was very depressed when he first was diagnosed. As time goes by though he has become more positive and tries to enjoy each day as much as he can. I know that having a positive attitude has helped him bear all that he has gone through and is helping him to continue to fight a good battle against this ugly beast. I am glad that you have so many things to look forward to and that you have a caring wife. praying for you and for all on this wonderful site. donaf Quote Link to comment Share on other sites More sharing options...
Guest CindiB Posted November 21, 2003 Share Posted November 21, 2003 Dean, Your situation and diagnosis sound exactly like my mothers. She does have a cancerous, swollen lymph node in her neck as well. She was diagnosed mid October and we were told that without treatment she would live another three weeks. She had no weight loss, but had been sick for months, and was exausted. We began a fifteen day treatment of radiation (250 rads per day, five days per week, weekends off) that will end on Monday. She hasn't had horrible effects from the radiation, but has had a VERY sore throat and some vomiting. Vomiting only started this week. On the whole, she's feeling much better. Remember that regardless of what the dr's say, there is ALWAYS hope and while a cure is not necessarily in the cards for everyone, you can have stable disease. Don't give up until you slay the dragon. Cindi Quote Link to comment Share on other sites More sharing options...
Guest CindiB Posted November 21, 2003 Share Posted November 21, 2003 Dean, I just read your post about the petscan. My mother didn't have one either. The dr's said the same thing yours did. I guess every situation is different. My mom is using a lot of visualization and I think it's helping a great deal. Her attitude is improving, though not as good as yours! I wish!! We keep calling her the Dragonslayer and telling her she has to slay the dragon, hence my reference to you . Everyone with cancer has to fight their own dragon. I'm grateful for people who are fighting the same battle. Cindi Quote Link to comment Share on other sites More sharing options...
Debi Posted November 22, 2003 Share Posted November 22, 2003 Dean, I am glad that you finally got the answers that you have been searching for from your doctor. AT least now, you know what exactly you are dealing with and the steps you have to take. That's alot better than a big blank question mark!! I have seen people who have beaten and are beating their cancer on this board. If anyone has a chance to do the same, I would have to say it would be you. Make sure to keep us posted (excuse the pun ) and I wish you lots of luck in your journey ahead. Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted November 22, 2003 Share Posted November 22, 2003 Hi Dean, Great attitude, that’s 90% of the battle. Mind over matter. My father-in-law was in the Navy for 38 years. You know in the days of iron men and wooded ships. World War One and World War Two. He lived to be 95. Must be something about the salt air. So you should be able to match that. Sounds like a good game plan. Sounds like once you restore some of your strength and stamina you should be eligible for more aggressive therapy. My doctor told me that it is also important to remember when being treated with chemo etc. it also kills other cells and can damage other organs as well. Because I tell them I want to be microwaved with as much as I can take until I glow. I do believe my doctor does have the right game plan for me never the less and have had success in slowing it down. Sounds like the same for you. Take care and God Bless. Rich My 2-cents in battling cancer: Stay positive and focused. Never give up, never give in. Take one-step and one day at a time. Enjoy life to it’s fullest. Lots of laughing and yes even crying. It rejuvenates the body. Quote Link to comment Share on other sites More sharing options...
teresag Posted November 22, 2003 Share Posted November 22, 2003 What a story you must have to tell about your life, Dean! I'm glad you posted your picture. You seem like one amazingly tough and colorful guy - kinda like my own Dad was, a Navy man too. I'll keep hoping that the radiation beats back that cancer enough to let you start chemo. Although you probably don't need to be told, keep on top of everything re: your disease and treatment, make your drs. talk straight to you, and keep telling us all about yourself. I'll bet you have LOTS of great stories to tell. Welcome here, although I'm never glad anyone has to be here, it's always good that they have found this place of support and friendship when it's needed. Quote Link to comment Share on other sites More sharing options...
lilyjohn Posted November 25, 2003 Share Posted November 25, 2003 Hi Dean I too think your attitude is great. We were told also that attitude is 90% of the battle. Unfortunately no one bothered to tell the docters that their attitude was also important. As for worrying about the weight loss and chemo I have a comment. When Johnny was first diagnosed (tho the diagnosis left a lot to be desired) we were told he could not have radiation because he was stage 1V and had so much cancer(not biopsied just going by exrays) that it would burn him too bad. Later learned that radiation is one of the most important tools for at least comfort care in stage 1V. Well he had lost 25 pounds in about 2 months. He had pneumonia when he entered the hospital and was very depressed after hearing the diagnosis. Being told that after the first 6 treatments a CAT scan would be done to see how much (not if) the cancer had shrunk gave him the boost he needed. He started Chemo right away and had very few side effects. He did not lose anymore weight instead he gained back what he had lost plus 5 pounds and instead of getting weaker he got stronger. He went from being able to move air only half way down in his right lung to being able to move it all the way down in both lungs. Because of that he weaned himself almost completely off the oxygen. My point is that everyone is different and tho you have found an older docter that you seem to trust more don't let that be your only guide. Get that second opinion and remember if at any time a docter starts talking like he is giving up on you fire him!! Your attitude may be 90% of the battle but his attitude is 100% of decision making that your life depends on. Statistics are made to be broken. They are numbers NOT people and they do not take into consideration things like , love, faith and hope or attitude. God has the final say but if you are not careful man can sometimes over ride even God's wishes and plans for you. I say fight with all you have and when you think you can't go anymore say a prayer for strength and then fight some more. Giving up gives nothing but death. Fighting gives life, love and hope. What could do more for you than those things. God Bless you sound like you are a lot like my Johnny was and he was a very special man. Lillian Quote Link to comment Share on other sites More sharing options...
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