Debaroo

Shordy, I understand your frustration with your father. My father-in -law is the same way. He's a tough, military man with six kids and a real shi#@$ attitude! He has had several brushes with death and, this probably sounds stupid, but each time I have expected him to have some type of realization that he must make it known to his family that he cares about them. I mean, I always thought that being stricken with an illness such as cancer, or in my father-in-laws case emphasema and heart disease, that they gain perspective about what is really important in life. And that is the LOVE OF YOUR FAMILY, especially your children! I mean, it always happens in the movies, right. "On Golden Pond" and all that. I think that when someone isn't getting 'THE BIG PICTURE', than the rest of us that have been saying "oh, thats just the way he is" and have that sort of acceptance of the persons toughness are left heartbroken and disappointed. Because, well, why does ANYONE, especially a caring family member, deserve to be treated that way? And there are no clear answers. But I do believe that showing love for someone puts one in a very vunerable place, and takes more strength than it does to be the "hard-*ss". Showing love for someone, and letting your guard down leaves you open to being refused, or embarrassed, and (especially in the case of your children) it leaves you open to be afraid-afraid of loosing them, afraid of not being seen as a pillar of strength, afraid that if -God forbid-something were to happen to them (be it your grown children, small children, spouse) you would somehow suffer more. Hurt more. And for someone like your dad or my father in law, that is MORE FRIGHTENING than getting them so pissed off that they CHOOSE to leave you alone. It seems screwed up, but I think it makes perfect sense. They forget that the love that they are bottling up is ultimatly the most beautiful emotion you could have. That the rewards are boundless. They are so focused on maintaining a certain "cool". They believe that in doing so that if/when the sh#@ hits the fan, they will be somehow protected from the heartache. Thats just my opinion. I am sorry that I didn't get the opportunity to post to you earlier, but you have been on my mind. All I'm trying to say, is that you have EVERY RIGHT to be frustrated and angry and to take whatever break you need. There are no rulebooks on how to be a good parent, to small children or adult ones. And I hope that you find the strength to take the time for yourself, and to also do in the longrun what would allow you to be able to look at your reflection in the mirror and not finding yourself saying "I should have" or "I shouldn't have". We all have limits. And you deserve to be treated in a loving way, as do the rest of your family. All I can say, is that you know you love your dad, and so does he. And he loves you, too. We all have different ways to show it. Its kind of like, when it comes to Love, you speak English, and your dad speaks-I don't know-Galic. You don't understand his language, and he can't speak yours. But the love is still there. Well, I hope this was of some help to you. I know what you mean, the whole "turn the other cheek" thing gets tiresome. It's like "This cheek is sore as hell, and this one ain't stupid", so what do you do? You take a break and vent to us. Just like what you did. Continue to take care of yourself, and keep posting!! Deb

Peg, I am sorry that this round of chemo didn't help, how many different combos have been tried? Have you asked about an Iressa trial? Chemo didn't help my dad either, although his cancer did grow very slowly, it DID grow. So, they started him on Iressa. We seem to believe that its working, as Dad feels so good and is no longer experiencing back pain (spine mets). Please try not to give up, as I see it-as the same thing happened to my dad, for the chemo not to work and for the cancer to have spread to the other lung-it hadn't spread anywhere else. Eventually Dad had brain mets, which we handled with Gamma Knife, but the cancer didn't spread anywhere else. Which is good, maybe it is slow growing enough. If he is not experiencing symptoms of further mets, that is also good. It is good that they're doing test to be sure there are no other mets. I have found that when we get news we're not thrilled with (like that Dads chemo was ineffective, it helped to reason and see the big picture. He still felt good, and there was asymptomatic of the lung mets (he got 2 more) or of any others for that matter. Also, now that you know that that particular chemo cocktail didn't work, you can move to the next type. Please try not to give up hope. How is your husband feeling, physically? Does he feel like a "sick" person, does he feel physically different, aside from the side effects of chemo. Please keep us updated, and when you need a sounding board, this is the place. Frustration and fear are normal, but when you let them take over-they can be dangerous. Take care, and keep us posted, you're in my prayers, Deb

YEEEEHAAAAA!! Alyse, I am SO HAPPY that the gamma went well!! I was going to e-mail you to check up, but I didn't want you to think I was harrassing you or anything . And for the tumor to have not grown further deserves an extra YEEEEHAAA, and that there were no OTHER mets, again a big, loud YEEEEHAAA!!! I hope he does well on the Iressa, my dad goes for his first CAT scan (since starting the Iressa) next month, so I'll keep you posted. You and your husband deserve a major TOAST! "To continued good results and being in good shape (CLINK) CHEERS!!" I was so relieved to see your post. Continue to take care, your husbands case sounds alot like my dads, slow growing(good). Here's to hoping that the Iressa does its thing!!! Take care, DEB

Fay, prayers for your mom and her doctors visits tomorrow. Take care, Deb

Tiny, HERE, HERE, I agree COMPLETLY!!! Any non-smokers out there that feel all warm and fuzzy that they are somehow exempt from LC need to be forewarned. Maybe your risk is lower, but it is NOT non-existant!! Personally, as a woman, the only thing I can be certain of is that I won't get testicular cancer, otherwise, all bets are OFF!! Am I right? I mean, I'm going to the doctor tomorrow because I have had a cough that I just can't shake. It is in my throat, and likely due to an allergy-related nasal drip, but if I had a dime for everytime I have said "what if?" I'd be paying off my car loan. I have been to the Dr. on three occasions about the cough, its weird, because while I work out at the gym I don't cough at ALL, and at night while I'm upstairs I don't cough at all-so I may be allergic to my dog, Farley. I've ALWAYS suffered from allergies, but I know that I'm nothing special, and I need to get this thing cleared up once and for all!! It is annoying at the least, and a bit unnerving. Anyway, thats my opinion on the priority list of the cancer society, and the mis-information that the public at large have. Take care, Deb

Marlon, I will keep your mom in my prayers for a successful surgery and recouperation. Please let us know how it goes, I know you will-so that was a pointless request, sorry . I hope you know that you will not be alone in spirit in the coming weeks, we will be with you and here for you when you tell us how well the surgery went ! Take care, Deb

Shordy, I am so sorry that your dad and your family are going through this. My dad is also on Iressa, and from what I read of the possible side effects, I don't recall any mention of fluid build up. Its good that the CT and MRI came back good. Seeing as he is on the Iressa, I take it that he is not on any other meds for the cancer. I suppose an allergy is possible, of course I'm just guessing. Did they discontinue the Iressa? I will try to look up a few things to see if there can be a connection, I mean, just because the side effects may not mention it, dosn't mean it isn't possible. Everyone reacts differently to different medication. But I have to say, that the thought that he was allergic to it did pop into my head. Please let us know how he's doing. I know that waiting for test results is AGONY. And as I see it, calling regularly for the test results before the week is up is your right. Just explain that you're sorry, but he's your dad and this is a very frightening time for both HIM and your family. I'll keep an eye out for your posts, and there may be someone here with more insight. I'm sorry I couldn't give you the info. you are seeking. Take care, Deb

Ginny and Earl, I think that being aggressive in treatment is a good thing. I will keep you guys in my thoughts and please continue to let us know how you BOTH are fairing. May the side effects be minimal and the benifits be MAXIMUM !!! I have a hunch that he'll do alright. He seems determined, and with a wonderful wife like you by his side-let's just say-I'm glad I'm not one of those cancer cells!!! Take care, hugs and prayers to you both, Deb

Renee, I'm sorry that your mom has to go through this . How are you holding up? I just wanted to let you know that I'm thinking of you and I will say a little prayer for your mom and you and your family. Take care, and please keep us posted. Deb

Caroline, it's great that the chemo worked so well for so long for your dad. Have you ever tried to get him into an IRESSA clinical trial? It isn't guaranteed to work (but what IS?) but when it does, it's pretty amazing. Maybe you could contact your dads onc. and ask about it? Take care, Deb

Zimbo, Great that your mom will get the needle biopsy. It is really true that "the squeaky wheel gets the oil" making noise is the right thing to do. You have nothing to loose and everything to gain . Keep us posted, you're in my thoughts. Take care, Deb

AMEN CONNIE!!!!! GREAT POINT!! Deb

I would also try to go for a second opinion. There is much that can be done for brain mets. Please look into Gamma Knife, my father had it in January, and would not be doing as well had he not. Going for a second opinion you have nothing to loose, and everything to gain. I hope that you come back to the boards to give an update, or if you have any other questions or concerns. Take care, Deb

Cathy, GOOD FOR YOU CATHYS DAD!!! That doctors behavior is what I would call a "What the--- " moment. It is unbelievable how they can hold THEMSELVES up on a pedistal like that. When I was about 22 I broke my ankle in a "freak" jet-skiing accident (the freak being me) and had a tri-maliolar break (all three ankle bones) anyway, as I lie on the stretcher in the ER this young orthopedic surgeon came in and said (I wish they had a emoticons face to represent an arrogant doctor) "Boy, you have bad luck-you have a bad break, you need surgery, the only good luck you have is that I'm going to be doing the surgery." I looked at him and said "I hope you can live up to what you think of yourself." Complete attitude adjustment after that. I mean, I'd never been under anasthesia before and I was really nervous. I'm so glad that your father had the courage to call the shots on his own behalf. Unfortunatly, I don't think too many people would have the confidence to do that. And it's great that his lung specialist was so supportive. It just goes to show you, listen to you gut, you know your body and how you feel-you have to be your own advocate. I'm sure your Dad knew you'd back him, too, which is a great help. Keep us posted as to how he's doing, and continue to take care, Deb

Zimbo, I am sorry that you found the need to come to this board, but you are in the right place for info and support. My Dad was diagnosed in January 2002 after a needle biopsy of the spine, with what was thought to be SCLC, extensive stage (it had metastisized to the spine) and was present in both lungs. In October 2002, after three types of chemo, the tumors were not being effected, yet they had barely grown. A needle biopsy of the lung showed NSCLC, a very slow growing form of it. Please be prepared, needle biopsy's can be very tricky, and if they don't get a good sample another biopsy will probably be in order. My Dad is fairing very well. He is now on IRESSA, which is still a clinical trial but pretty available to many people. The Iressa is used only if two or three (I forget which) types of chemo were tried first. I know your mother is scared and may be depressed, you may want to request an anti-depressent for her. Please emphisise to her that her cancer is slow growing, read posts from here to her that may improve her emotional outlook on the whole thing. Her attitude will greatly effect her fighting this disease. Katie is absolutly right, research as much as possible. And let your Mom know that she is not in this alone. Come here as often as you need, even if you just need to vent. I have no idea about the health system in the UK, but from what you said, it is at the least slow. As far as statistics, when my Dad was diagnosed I read them and was so sad. Now it is a little over a year and I not only question the statistics, but ignore them completly. Just try to keep an eye out for symptoms of further mets (metastis) so that they may be handled ASAP.. But keep in mind that there is much that can be done for your mom, come to this board at anytime with ANY and ALL questions-because there is alot of knowledge to help point you in the right direction for more information. I will keep you and your mom in my thoughts and prayers. Tell your mom that there are survivors of this disease, and there are people surviving with it also. My Dad has been able to live a pretty normal life, even through chemo, many people have-so, why not her? Right? Please keep us posted, and know you are doing all you can for your mom. Your looking for info. and that is REALLY IMPORTANT. Please take care, Deb

Renee, I think its great that your mom is not so concerned about her appearance. When my dad started to loose his hair he had it buzzed really short, it was itching him when it started to fall out and he found it to be very annoying. His hair is all grey, but REALLY thick. Its actually quite nice. Anyway, now he wears baseball hats all the time. Its funny, because when I was a kid I always wanted to buy my dad a cool baseball hat, but he never wanted one because he said he didn't like to wear hats. Then he got cancer, and started to wear one and it made me sad . Now his hair is back and he STILL wears a baseball hat outside all the time. He said he feels naked without it. I guess the cold weather we've been having dosn't help. Oh, well, now at least it gives me another choise when its time to buy gifts. He's a hard man to buy gifts for, so why not a nice baseball hat. Anyway, I hope your mom starts to feel better really soon. And I also hope your brother dosn't freak you out like that again. My mom always said that when the S*%$ hits the fan, it always seems to be that one sibling ends up taking up most of the slack, and has to take charge. I guess its true. Please continue to keep us posted about your mom and tell her she's got a slew of "cheerleaders" as JudyB would say, cheering her on. And you, too. Take care, Deb

Renee, just for the heck of it I went online and found a website that may be of some help to you, there is a questionner for you to fill out online and then someone would contact you. The site is http://www.kycares.net It is for a program called Kentucky Cares. I hope this was of some help. Take care, and keep us posted, Deb

Renee, you have nothing to be ashamed of, and everything to be proud of. You are human, you love your mom and as the only caretaker you are becoming physically AND emotionally exausted. There is no shame in wanting a break, or being relieved when you get one. Taking care of a loved one who is sick is a major undertaking. I live on Long Island, and we have a program called RESPITE. There are different types, some for parents of children with various disabilities and others for those who are in your situation-the caregivers of a loved one that needs either constant supervision or help with eating, getting dressed, etc. If you contact the hospital that your mom was in and ask to speak with a social worker, or even if you call a social services type organization, they should be able to point you in the right direction. RESPITE consists of people trained in assisting someone in your shoes, they are caring people that will sit with your mom for a few hours and make sure her needs are met, as well as just to spend time with her. If you feel more comfortable, in the beginning you can stay close to home and visit with a neighbor, or even just go to a quiet place in your home and read a book, or you may want to just go to get a cup of coffee and "get out" for a little while. This would afford you a much needed and required break. Visits can be scheduled on a regular basis, and may require a small fee from you, but are also subsidized by government funding. I worked for an agency that provided these services and it was a well run and much needed program. I hope this was of some help. As you continue to take care of your mom, please try to take care of yourself, too. It is good that you shared your feelings, and your feelings are not only understandable, but COMPLETELY NORMAL!! Don't beat yourself up over it. That is why there are various volunteer groups and respite programs, because they are needed and understandably so. Please take care of yourself. Deb

Alyse, I know you were supposed to find out if your husband was a candidate for GK yesterday. I was just wondering how it went. I'm hoping for the best. Take care, Deb

Kristen, I am sorry that your dad has lung cancer, my dad was dx in Jan 2002. But I will say that I wish he were in the position of surgery being possible, although it is a rough surgery, it seems to be a great advantage. But I can't complain, hes doing alright. Your dads positive attitude will be a big plus. I know that research has shown that when a person gets depressed it lowers the immune system, and I think that you will find his positivity to be contagous. I will keep you and your dad in my prayers. Keep us posted, and find comfort in knowing that there are alot of people out here pulling for you and your Daddy. Take care, Deb

Teetlee, I don't know of anyone who has had RFA, but have read some pretty impressive things about it. I am so happy to hear that you are a freak of nature (which is meant as a compliment), and that your cancer is not acting "normal"! Its great to throw the Docs a curve ball now and again, maybe it makes them question the "statistics" that they seem so used to relying on and also question whether they should assume that they know what will happen next. Life is unpredictable, so why shouldn't cancer be? Good luck with the RFA, please keep us posted. I have been looking into it for my dad, extensive NSCLC, and would be very interested in knowing more about it from the point of view of someone that has had it done. Keep us posted, and I'll keep a good thought, make that many good thoughts, for you!! Take care, Deb

CARPE' DEUM (ok, the spelling might be wrong), Janet. SEIZE THE DAY!!! Life is uncertain, for EVERYONE! My husband is famous for saying that I worry too much, that I'm too tense. He is right. I am learning to let go, because there are no guarantees, and worrying is like paying interest on a loan you'll never take out. I used to tell him that I'll stop worrying when he gets a NOTARIZED LETTER FROM GOD stating that nothing will ever happen to the people I love, or to me. But then I realized, that it wasn't that I couldn't stop worrying, its that I WOULDN'T stop worrying. As if all the worry would somehow prepare me for when the s#&* hit the fan, what a crock. I'm not saying that I don't worry, hell, I have 2 children. But I don't let myself get too carried away.. I read Estrias post, and she's been there, and reading her past posts about how she has gone on with her life served as a swack in the head to me that even when the S#&* hits the fan, you do what you have to do-take care of it. Now you've been given the thumbs up from your doctor to go on with your life. I know I've not been in your shoes, and I hope I'm not being preachy or anything, but reading Sandy, Estria, and Gails posts, I really feel that, when I start to sit around and worry, I've really got some nerve. I don't want to insult anyone that has gone through surviving something like lung cancer, or breast cancer, or abuse, I could go on and on, by worrying about something that may never happen. And, Janet, I wouldn't want to insult you. You're a survivor. I hope you enjoy. Take Care, Deb

Cary, THAT'S IT.. It was driving me crazy that I couldn't think of the term, and it was at the tip of my tongue. Thank you. I hated to describe it as I did, but that's basically what the meaning is. Thanks again. Take care, Deb

From what I understand from my dads oncologist, the doctor must be part of the clinical study to get iressa. However, I think it is easier for other doctors to get because it is currently awaiting approval from the FDA, and it is being pushed through on some quick program. My dads oncologist said that usually when a drug is almost approved, the drug company stops making it available to new patients, pretty much because they know that soon it will be available and they lessen their own paperwork. However, the drug co. that manufactures Iressa has-thankfully- made it MORE widely available, basicly "oh, the poor guys is dying, lets do the humane thing and try to help him out" catagory, I'm sorry, I forget the actual term, and its annoying me because the word is at the tip of my tongue ! Cary got it, the word was "compassionate use"-thank you Cary. When I remember, I'll edit this and write the catagory correctly. Even though my dad didn't fit into that catagory, that is how they were able to get it for him. I would really try to find out if this oncologist can get it or not, if not you may want to find one that can. I do know that one of the qualifications that my dad had to fit was that 3 courses of chemo were tried, which they were. I hope this was of some help to you. Take care, Deb

Don, I am with you, the squeaky wheel gets the oil, truer words were never spoken. It is frustrating when you KNOW a situation is urgent and the doctors see it as "routine"; "par for the course", nothing is routine when its YOUR loved ones life on the line. So it is our job to remind them. GOOD FOR YOU!!! I hope that if the S#%! hits the fan and I should ever "need oil", my husband squeaks as LOUD AS POSSIBLE!!! You and your wife are in my prayers, I know its difficult to keep those doctors on their toes, but you're doing a fine job. I'm sending warm thoughts your way. Take care, Deb