SDianneB

It truly is good to read -- I agree. Now, if they'd only believe it and say it! When I was first diagnosed, what tipped me to the side of going through treatment was when the Pulmonologist sat in front of my sister and I in the hospital and told us the frank and brutal truth -- that this disease was a killer, but there was plenty we (emphasis on "we") could do to stop that from happening. Later, the Radiation Oncologist looked me in the eye and said "we are all here working with you for a cure." Every time I see the Pulmonologist and we are talking about treatment, how I'm feeling, etc., he's talking about the future -- for the next 20 years or so, in 30 years, etc. In other words, he doesn't talk to me like I'm a goner or a patient with only limited time. It sure does make a difference. Di

Some of us may have read recently about the medical profession's hesitancy to use the term "cured." Given that, this discussion, and similar ones in other threads, I'd like to pose this question to health care professionals: (We know they certainly aren't immune to disease, as Cindy points out, but just as a hypothetical question.) If it were you, your wife or your child, and you had difficulties getting full or straight answers from an oncologist or a radiation oncologist, would you be inclined to forgive it as a "bad day," or a misunderstanding, or something else? Would you not do everything in your power to seek out the best you could find, and not want to waste time with people who weren't helpful to you? What would you be saying to someone who told you to just take your child home and love him/her, because treatment would be a waste of time? Your mother? Your father? Your sibling? Your spouse? It's a given that health care professionals normally have some advantages within the system -- "professional courtesy." It doesn't, however, mean that they get perfection, no more than any of the rest of us. From the years I spent in the field, I am awestruck by the many health care providers out there (docs, nurses, and all the other allied care givers) and how overburdened they are, yet they keep on giving of themselves for us. But, when we come across a bad apple in the barrel, what would you have to say about it? What would you be saying to them directly?

Gail -- YAY!!! Go have a facial for me, ok? Wait. What am I saying -- I'll have my own facial, thankyouverymuch. Di

Elaine says: "The calender looks nice, but I would much rather see 15 beautiful faces of LC survivors instead of the beautiful flowers." Well, if the purpose is to inspire, then leave me out. It would be TOO scary! Di

Cindi, just be very cautious before signing on with an attorney, ok? Class action suits aren't usually what they are cracked up to be. Attorneys will rush to sign up as many people as possible, with no thought of ever really going to trial, in the hopes that they can get a large settlement from the company. The trouble is that the attorney usually gets the lion's share of the settlement, and sometimes even takes out additional money for "extra" fees. Just make sure you read the small print -- over and over -- to make sure how you are represented and that you know all the details. Also be prepared for it to go to trial, as the company may believe they can get a better deal with a judge and jury than with so many settlements. Either way, it can take years to resolve. If it were me, I'd stay away from attorneys advertising this on television and on the internet, and look for a reputable one in your area known by other people to at least advise you as to what your chances may be to prevail with legal action. Good luck to you! Di

Debi, I'm so very sorry. I recently posted about losing my Boopy cat, and had some pangs of guilt just like you mentioned, because I was sick and wasn't paying such close attention to him. But, like your Casey, he had a good long life, and lived in the lap of luxury -- MINE! All my friends say that if there is such a thing as reincarnation, they want to come back as one of my cats! When and if you're ready, you'll have plenty of room and love for another little 4-legged friend, and will give and get as much joy and love from it as you have any of the others in your life. These little critters just work magic in our lives, don't they? My heart goes out to you. It sounds like we all agree though that Casey is in kitty heaven playing with my Boopy, Mama Kitty, Baby Kitty, Mr. Kitty, and all the rest. Di

Well, I read it last night and it wasn't such a big deal after all -- at least not in my opinion. I didn't see anything in the article that hasn't already been discussed here -- at least once. It talks about a mentor, where we've discussed patient advocate - a little different, but basically just having reliable people to be with you. I almost fell over when I read a quote from a person diagnosed with lung cancer earlier this year who said all she got from her oncologist was "gloom and doom." Been there, done that! It was good info though, and of the helpful variety for someone just entering the vast area of confusion that is known as health care. Di

Doc Joe, I'll send you a batch of cyber cookies. (Trust me -- you'd probably rather have those than real ones if I made them!) Di

I never saw it the new way, so guess I didn't miss much, huh? Oh well. I was wondering what you'd done to MY Cowboys -- I'm a native Texan, and can't recall a Sunday afternoon in my young life that we weren't plastered in front of the television set watching the Cowboys play someone! Back then, they NEVER won -- it was a while before they would reach their heyday, but we were surely loyal! We have the Titans here now, formerly the Houston Oilers, but I don't pay a lot of attention to them, because we got Bud Adams in the deal when we got them! I've been mad at him ever since he fired Bum Phillips. Oh well. Di

Doc Joe, the gritching I do is about people who deserve to be gritched about. All you've done here is to be kind and thoughtful and extremely helpful, and just because you want to. You're a real human being, and based just on what you write, you have compassion and understanding along with the smarts needed to help people tackle the scourge that we're all dealing with in one way or another. I'd like to clone you and those like you to make up for those who aren't. I believe the good ones like you are in the majority, by far, but now and then we just come across the exception, unfortunately. I can't disagree with what the first poster said, but I think it's not just being angry at the cancer, but sometimes the sense we get that our "team" isn't being a "team." Make any sense? Some of it has to do with making the commitment to jump into treatment, and then get complacency when you're in aggressive mode! Must be something like being married at times -- one in a good mood and the other in a lousy mood! With the realization that some oncologists actually have cancer themselves and know firsthand what they put their patients through, the big difference between oncologists and us patients is that it is our lives on the line. If you hesitate or goof up really badly, it's us who will pay the price. It's us and our supportive families. Heavy burden, huh? Well, we put our trust with you guys, and I'm thankful there are docs around like you who deserve it, and then some.

Melanie, that's great news. I'm glad you're hanging in there. You're in my thoughts & prayers for big successes. Di

Paula, YAY!!! That sounds great. Keep up the good healing, ok? I don't know from rounds ... rounds of golf or chemo or whatever. I managed to figure out I guess after a few times with the chemo, that one "set" of an IV and then pills was a round. DUH!! My vote is that you go ahead and start ASAP. Sounds like that's important for just about all cancer treatment, unless for some reason they'd let you know otherwise. Di

Keeping everything crossed that this all works out for you. Are ya moving in down the street from me? That would be fun! Di

Wouldn't you know it. I'm strolling around in Walgreen's while at lunch, and see this week's U.S. News & World Report (Nov. 8, 2004 issue) -- the cover story: How to be a smart patient: A complete guide to getting teh very best medical care." Wow! I haven't read it yet, so don't know whether to recommend it, but thought I'd pass it along in case any of you are interested. You may be able to find it on their website too. Di

That's wonderful! See what happens while we're all posting and stewing and having that thing called "life?" YEARS pass!! YAY!!! Di

Xena, I'm so very sorry for you and your family. I will never forget what it feels like to lose my dad, so I have an understanding of what you must be going through now. Take care. Di

The only cough I had started about 2 days before I finally went to the hospital, and wasn't much to write home about. The night before I went, I started having pain in my right side. I had pneumonia, which was obvious, and had the extremely good fortune to be cared for by a Pulmonologist who put together my symptoms -- pneumonia with no fever and a cough that didn't quite go along with it, very low sodium count (120). My mother is 91 years old and has had a "tickle" in her throat for as long as I can remember, but that's just what it is -- she's in terrific health. So, you never know about symptoms, huh. I sincerely hope she will go to a doctor to at least try and find out what it is. I have a great deal of respect for voluntarily refusing treatment, but unless she knows what it is she's facing, how could she really make an informed decision? I do agree with others though who know that it will have to be up to her to make the decision. I see that big hugs and support are in order. Take care, the both of you. Di

Go and get thyself taken care of, ya hear? How very strange. As usual, I am clueless! The strangest thing I experienced (so far) was that the tape they use that looks like Saran Wrap (it has a name but I don't know what it is) caused a reaction when they used it over the marks on my chest when I started radiation. The ones on my upper chest & belly actually caused blisters on about the 2nd day. Ouchie. There was tape on both sides, and it didn't bother me at all, so I left it on there for another day until it started itching. When they redid the marks for the last half of radiation, I let them put that tape on my sides, thinking it would just be a day or so, but that time, it started itching almost immediately, and one side developed a little blister within just a few hours. In the ER visit I had recently, they used the tape on the back of my hand to cover the IV, and it didn't bother me at all. I guess I have sensitive skin, but only in places! I've sure never had anything like you described -- where something that you'd think was related to skin caused so much pain. I hope they figure this out and fast! Let us know, ok?? Di

Don, thanks for posting. I love hearing good survival stories. I'm sorry about the loss of your friend. This scourge that is cancer has just got to be stopped and soon. Take care. Di

Addie says: "My onc said, "You know this is curable?" Well....no, I didn't. Not from any "horse's mouth" anyway! So I made him repeat his words...which he did....my hubby and I smiled at each other like we'd just been given a reprieve (because we HAD!!)....and since that day (May 12, 2004) for the most part, I've maintained a positive attitude." My sister went with me the first time I saw the Rad. Onc. I had to ask the nurse why I was there, because the Onc. had not told me -- they told me at the desk when I checked out, when they told me he'd ordered a CT/PET scan that he'd not mentioned either. The last thing the Onc. told me was that radiation probably wouldn't do me any good, since I had adrenal gland involvement (I did not). I saw the Pulmonologist and found out that he'd called the Onc., and asked him to refer me for radiation anyway, and to just go forth with the idea that I was limited stage. I was lucky. Well, lucky and exhausted from having gone back and forth to all the docs because I was hearing different things from him than I was from the other 2. So, in the Rad. Onc. office, the nurse said I was there to be set up for radiation, and didn't Dr. S talk to me about this? Well, no. I told her exactly what he'd said, and I told the Rad. Onc. Not only did he think radiation would work for me, he told me that day that they were all (at the cancer center) "working with me for a cure." Wow. My sister and I burst into tears, and I told him that was the first time anyone treating me for this had said anything like that. And that was after I'd finished 2 rounds of chemo. So, imagine with all the stress and mental duress you're under with all this, going through chemo, and hearing nothing but gloom & doom, and in a tone of voice that just about says "she's six feet under already; just get her chemo done and she's outta here." (I took 2 different friends with me on 2 different visits, and my sister was with me once, so I had witnesses to all this, and they actually come down harder on him than I do, if that tells you anything about his personality -- or lack thereof.) Do I wish Dr. S ill? Of course not. He and his wife have just had a baby, and I hope that he learns to be a human being while raising his new child. I hope that for him and his child. (His wife is a dear person.) I will admit that I've wished him a few flat tires now and then, but that's about the worst of it. It's like night and day. I'd gone through the 2 rounds of chemo, feeling really better than I thought I should, but not hearing anything to motivate me to keep going. Believe it or not, when I went back to Dr. S., his only comment about my adrenal glands was that "apparently the Radiologist doesn't agree about the involvement either." Indeed. And his comment when I told him what both the PCP and Pulmonologist said to explain why they thought there wasn't adrenal gland involvement -- "Well, I see a lot more of this than they do." (They've been practicing since way before he was even an itch in his daddy's pants.) And yes, this is only a small part of the overall picture with him -- each and every visit was a new jaw dropping experience. Di

Joe, if I didn't say it already, I apologize, but I truly think that any bad experiences I've had with doctors -- including oncologists -- represents the minority --- by far. I've also considered the burnout factor, because I've been there, done that, with more than a few health care people in my lifetime. But here is the deal, I think, that providers make when they make up their minds to do what they do. I think they must realize that just being a doctor means that you won't get much sleep, may miss out on lots of time with your family, and may have to work strange hours. Never once have I expected miracles from these docs, but I could literally write a small book about the misinformation, different things being told to me on different days by the same person, and having to always be alert that everyone is singing off the same page. That is NOT what a patient should have to do, IMO. I realize that doctors deal with each other in a totally different way -- as colleagues. But, as patients, we generally see something way different. I "fired" the first oncologist because all he could come up with was gloom and doom, and his treatment wasn't at all within their own protocols, nor those of the other major cancer centers in the country. (He wanted me to have a PET scan the day after I finished chest radiation -- prime time for NOT having a PET scan. He was going to withhold the radiation to begin with because he thought I had adrenal gland involvement, even though all the other doctors disagreed, and there were NO clinical indications that they were. It took a week of my time to get the Pulmonologist to talk to him and get him to refer me for the radiation anyway. I firmly believe that had I not taken the time to listen and learn, my situation now would be perilous, at best. The one I have now is a breast cancer specialist, and doesn't appear to know SCLC protocols either. I had to spend almost a week going back and forth between her and the Rad. Onc. just to get the right tests done at the right time, and to get them to communicate to each other, and say the same things they were telling me. If nothing else, the mistake was mine in not seeking out someone who at least knows more about lung cancer, if not a lung cancer specialist. Apparently, not all oncologists are trained to treat all cancers. Keep in mind that these are 2 docs out of many wonderful ones whom I'm am most grateful for. The wonderful ER doc who got me to the right Pulmonary doc when my PCP was out of town, the PCP himself who is a great friend, the Pulmonary doc who has saved my skin more than once, etc, etc., etc. I want honesty and competency. And I don't think that's too much to ask for.

Glad to hear you're not having bad troubles with the PCI. I'm disappointed I couldn't have it before Halloween, as I thought I might grow a 2nd head, and give all the kids a thrill trick-or-treating! I miss Laugh-In too -- and how cute Goldie Hawn was then! I'm too old ... pout. Di

TAnn wrote: "On a brighter note, did anyone see ABC's evening news. The current administration has moved many obstacles to obtain a new and promising drug in the fight against lung cancer from (of all places) Cuba. It sounds very similar to the GVAX vaccine, but promises to increase survival rates by as much as 8 months, which is alot by most standards. The catch was that the United States would not pay Cuba for the drug to be brought to the US in money, but in food and medical supplies. I think it was a doctor in California that got the ball rolling on this one. " I also read something about a recent Executive Order putting Medicare patients into trials for the first time, but can't remember the details. If I can find reference to it, I'll share. Di

"We are alive....until we aren't anymore. I don't want to die of cancer...but I might. Until that happens, though, I'm going to enjoy my life as much as I can AND do what I need to do in terms of trying to beat this thing. Anyone locked in pessimism will not be on my team. It's just that simple!" You bet yer assets, it is! I can't believe I'm so dumb sometimes. I was stewing about having to wait on another PET scan (one that may be useless), and it occurred to me that no matter what, someone is going to have to commit either way -- PCI or more chemo. If not, then Di is going to be going to the other place, and taking her insurance with her. Oh, and your use of the word "bippy" almost made me swallow my popsicle whole -- too funny! I haven't heard that in years!!! (Hope the PCI is going well??) Di

Cheryl, I'll loan you my 2 fists if you need 'em. Grrrrrrrrr. I'd suggest that you get a copy of their policies and procedures if you don't already have one. Then read them and find out how they are supposed to handle this, and if you are being treated according to their own policies/procedures. Make sure this includes time off with and without pay, and their FMLA policy. Also, ask who else has had FMLA forced on them without it being requested. If they won't tell you, that will be one thing a lawyer can go after, but you may know of someone, or co-workers may know. If there isn't anyone, that's another mark against them. You can get a copy of the FMLA on the internet, and read it too -- it's fairly straightforward as to what employers can/can't do. As others mentioned, document each and every thing -- who you talked to, when, where, what was said, get copies of all the documents, notes, etc. Keep it all -- and start a diary of everything from now on. If you don't have one already, get copies of the plan documents for all the benefits -- medical/dental/life or whatever they offer. Read and learn them backward and forward too! They will be important if you have to change to COBRA coverage. You can also consider unemployment benefits while waiting on SS disability if you go that route. I don't know what you do professionally, but maybe you could do some work from your home to make at least a little money. I can't say for sure, but it sounds like you are costing them too much in medical insurance and they are building a case to get rid of you. Putting you on FMLA isn't like being fired, but that will come. You may be able, depending on the law in your state, to have a good wrongful discharge claim at some point, if there isn't anything to hang them on with FMLA. What is going to be really important, and I think an attorney will tell you this too, is that since they chose this route, their feet should be held to the fire and they must do everything by the book -- everything. And that's not just the book of FMLA, but their own book too. If they are treating you any differently than another "similarly situated" employee, then you have them by the short hairs, so to speak. It isn't just about you, now, it's about others in the past and what they have done with them, and how they plan on handling such things in the future. Much luck to you. I have faith that, if nothing else, you can make them regret starting down this path. Di