SDianneB

"Thanksgiving is a national holiday, but I doubt American Native Americans find it a really celebratory occassion. Hmmmm... I doubt the Constitution has an amendment for days off for government offices and officials, nor a listing of holidays celebrated by the Nation. After all, when those government workers are off for Martin Luther King Day or Presidents Day, MOST workers in the U.S. who receive minimum wage or the like are working! It's "just another day" to them, as most do not receive holiday pay NOR overtime, ya know?" Yep!! How many federal holidays are there now -- 15 or so? More? We get 6 a year. And we're open 6 days a week, so have to stagger schedules too. I'm the only one with Sat/Sun off. A friend of mine is a Constitutional scholar, and we were having this conversation once, and he pointed out to me that having a Martin Luther King, Jr. holiday could be considered discrimination if we use the Constitution and framers' intent as the basis for discussion. In the U.S., we are free to believe whatever we want, and even free to be racist. Not having a holiday to honor a well known racist to offset MLK Day might be considered discrimination by some. They might even be in the minority. (All depends on whose ox is being gored, I guess.) And no, I don't feel that way and neither does he, it was just a hypothetical discussion on the issue of separation of church & state. I agree though, Becky. Staggering schedules might be a good thing for John Q. Public, except we couldn't hold our tax returns longer when the 15th falls on a weekend!!! Di

More from Mr. Murphy: They call me back about the unwanted copies of records, and of course, that was all my fault. Seems as though when I dared to ask this morning how much longer I'd have to wait, it made them rush, so they failed to notice I'd just requested records from May 31, 2004 to date. I told the lady that I'd been there yesterday to request the copies, and felt like 24 hours was plenty of time to have them done. She says they normally do them at the time the patient requests them. So why then, when I specifically asked if it would be better for THEM if I came back the next day, they said it would be better???? Then, she tells me they "can't be held responsible" for any duplicate copies that may be in there. I ask her if she went out to eat and they brought her pie that she didn't order, would she pay for it? No. Well then, neither will I. And give me a break -- for what they are charging for these copies, they danged sure better be "responsible" for their own work. Good grief. Di

Schmaydee -- I hear you on the PCI. Addie and I have discussed it too, and there are others here as well. What I'm saying is that I very much want to have PCI, but I can't just walk into the Rad. Onc. office and ask for it! Supposedly after the PET scan next week (scan #6 since June) they will re-evaluate and reconsider the PCI. Honestly, I don't think they will do a thing, given the history I've had with them, but maybe they will surprise me. Bummed out? Yep. But also tired of having to fight just to get standard treatment based on their own protocols and what they tell me, and then having to play this run around game just to get someone to really listen and deal with me as an adult, which only comes about when I can get them to talk to each other, because they aren't about to listen to me. Di

Well, it's only a few weeks before I see the specialist, so ... We see people on tv every day who have been selected to have their homes made over by the ABC Extreme Makeover/Home show or one of the various TLC and/or Discovery channel teams. We see people who win $500, $1,000, or a million $$ or millionS of $$ in the lottery. We see people who are considered "miracles" because they survive horrific car accidents without a scratch. We see people on game shows who win fabulous trips, appliances, cars, etc. We see people who are the millionth visitor to a local grocery store, movie theater, mall, or whatever, and win big prizes just for walking in the right door at the right time. I am not one of those people. I'm one of the "Murphy" people -- as in Murphy's Law. Always have been, probably always will be. But like I said in a previous threat, having no expectations means I'm seldom disappointed. All I'm aiming for in this visit to Vandy is his opinion - one way or another. If he agrees with what I've already heard, so be it. I'll just stay where I am and do without the PCI. If he disagrees, I don't even know if he'll take me on as a patient, or send me back to the others with his recommendations. (Rest assured if that's what he does, they will fall on deaf ears.) Either way, if I'm not a candidate for and can't have PCI in December, I won't have it. Murphy sez, yanno. Di

Just a few little factoids ... Although some people probably did come here to avoid religious prosecution, most of those who did so came to the colonies, before there was a United States of America. Several of our founding fathers were Deists -- not Christians. It's quite different. Deism is, in fact, based on a disbelief in scripture, prophets, superstition and church authority. As U. S. citizens, we have freedom *of* religion; not freedom *from* religion. Di

I am in awe! That's fantastic. As my granny would have said, he must have a "strong constitution." Di

So, the saga continues. I show up this morning to pick up the hospital records I requested yesterday morning. Same time, 8:15 a.m. They have me sit down. 30 minutes later, I ask how much longer -- "3 minutes." Why so long a wait? "It takes a while to get the copies made." Ok, so it takes a while, granted, but 24 hours plus another half hour? "gulp" Oopsie. Finally, after I'd been sitting for 45 minutes, here she comes with 227 pages of copies. $149.95. THUD I get to work and see that they copied a visit there from 2003 that I didn't ask for. In fact, the form I completed yesterday (a copy of that was on the very front) said that I specifically wanted records from May 31, 2004 to the present. I've just called them back, left a voice mail message, finding out who I talk to for a refund, as the 2003 records weren't asked for, and I'm not paying for them. I haven't counted pages, but they are at least 1/4 of the total. Interesting reading, although I've just skimmed so far -- I was getting 700 mg. of Carboplatin, plus a total of 750 mg. Etoposide (Esoposide spread out over a 10 day period), over 4 rounds of chemo. One report said I was a pack a day smoker; one said 1 1/2 packs a day, one said "over a pack" a day. I smoked less than half a pack a day, and had for years. I'd cut back about 8 years ago when I repainted my house and stopped smoking inside, so as to keep the icky residue off the walls. It would take me about 4 trips to smoke 1 cigarette -- I'd leave the butt each time, and make several trips back until it was gone, usually 3 or 4 hours. I could buy a carton (10 packs), and it would last almost a month, usually more. I told them that. Looks like they really don't listen, huh.

Beth, you're probably aware that I have some of those anger issues myself right now! I am ever thankful that I can post here and vent some of it, because I don't have the real live person to talk it out with like you do -- the hubby! You should see me when I'm angry and typing -- my fingers FLY over the keyboard, and I type fast even when I'm feeling normal! It's like the anger peaks, and a few minutes after I'm done, a deep breath, and I'm back to being more calm. I won't tell you at all to not be angry, because I'd be a real hypocrite if I did. I will say that having it and getting through it was a learning process for me, and one I'm still working at, and doing much better. So, let 'er rip ... Di

That's good to hear. Thanks for letting us know. Di

I've written a few rants here already about having to wait so long -- I call it "Institutional Disrespect" -- for a variety of reasons. I never had to wait more than a few minutes at the Radiation Oncologist, either having treatments every day or to see him every Friday. I wait around 30 minutes or so to see the PCP when I go, and usually about that long to see the Pulmonologist. (Sometimes they have called to tell me he's been held up in the hospital, and offer me the choice of coming in later to avoid a long wait or rescheduling.) It's just at the oncologists where I've had to wait that long, and it's not unusual there -- not for me, and not for others I've heard say the same thing. They would do my blood work, then put me in an exam room, close the door,and there I'd sit for 2 hours. After the first time, I started leaving the door open so they could see there was a person behind those closed doors. It made some difference, because they would stop and offer me coffee -- ha. Didn't get the doc there any earlier though. Then, there were the stories from this morning with me trying to get copies of my records. Hahaha ... I parked and ran into the Medical Records dept. to sign the authorization forms, and they demanded to see my drivers license or said they wouldn't release them. After a few words with the director on their phone, I told her to ask me any question from those records, and I'd answer it -- I can tell her my DOB, SS#, and whatever else she wants to know to prove it's me. Failing that, I ask her to meet me in the CEO's office, because I worked for that company for 25 years, and I know their CEO and have for at least 10 years, and I, in fact, knew the man personally who started the whole danged company many years ago. She finally figured I was who I said I was and accepted the release form that I signed. I'm leaving, and run into my PCP on the way out. He asks why I'm there, so I tell him I'm getting records to go for a 2nd opinion. He wants to know who told me to do that -- I told myself to do that. Then he wants to know why, so I reminded him that I've told him many times what I think about the oncologists I've been seeing, so he should already know why. He doesn't seem to like this much, so then starts to caution me to get him a copy of the consultation, make sure the Pulmonologist "approves" it, and on and on. I stop him, and remind him that these things are MY choice, and that the Pulmonologist knows all about it, thinks it's a good idea, and it's a done deal. (The PCP is a good doc, and is a friend of my sister's. She doesn't understand why I don't relate to him as a friend too -- because he's my doctor, and not my friend -- he is HER friend.) So, I get to work, tell this to my sister, and she hops on me about the PCP, and how he will help me if I just let him, yada, yada, yada. I tell her that I have discussed this with EVERY doctor I'm seeing, so if it's a surprise to any of them, that's only because they were NOT listening. Not my problem.

I can think of only one time going to these Oncologists that I've been seen within 1 hour of arriving, on time, for my appointment. The norm there is a 2 hour wait, or has been in my experience. If it's "only" 2 hours at Vanderbilt, that wouldn't seem like such a bad thing to me! The Oncologists I see own their own imaging center -- that is where they want me to go for scans, but I go to the hospital (Centennial) for those so the money doesn't go into the pockets of the docs, thinking they won't be so eager to order to many if they aren't making any money from them. So far, that's been a correct assumption on my part. It won't be much longer now, but by the time I see the guy for the 2nd opinion, November will be over, and I will only have December to actually have anything done -- either 2nd line chemo or PCI or whatever -- as my insurance deductible & copays kick in all over again on Jan. 1, and I for sure can't pay for all of that out of pocket. Whatever will be done to me will be done in December, or won't be done at all. That's part of the reason I'm wanting them to move on right now and stop with the sitting and waiting. Also, some windows will be closing soon -- namely the window in which PCI will actually help and not harm me. We'll see!! Di

I keep saying it's the cynic in me that leads me to believe this, but maybe not. They order scan after scan and then insist that I have them done in the imaging center that they own. The first time this came up, the reason was consistency -- I should have all the scans done at the same place on the same machine. Makes sense, huh. So, for consistency, I should be having them all done at CMC because that's where the first ones were done. Wrong. The next "reason" was that they couldn't get the results as fast from CMC. Huh? Well, if you make the appointment for the scan 2 hours before the appt. with the doc, maybe so. So, let's just make it earlier, ok? Wrong. The next excuse (we're way past "reasons" by now) was "she prefers her patients to go there." So? Which one or none of those "reasons" were real? Keep in mind that the money goes into their pocket in that practice. Once I told them I would be having my scans done at CMC because THEY said it was a good idea for consistency, and I'd handle getting them the actual scans on CD and reports if necessary, they cooled their jets a bit on ordering more scans. Since your doc is in the same practice and is going by a completely different protocol, I guess they either don't uniformly follow their own protocols in that practice, or don't know what they are, huh. Actually what you see are protocols from the Cancer Center, and can find the same ones on the web site that medical practice has. Interesting, isn't it. Di

Peggy so helpfully points out: Di: It's easy: The red ones are redbirds, the blue ones are bluebirds, the black ones are blackbirds, and the brown ones are sparrows! Piece of cake! Anybody can do it! hahahahahahaha .... funny lady, she is. hahahahahaha .... (It really IS funny!!!)

What Addie said ...!!! I'm not an expert either, but the one thing I would do for sure is find out about the adrenal gland involvement. I went round and round with that issue myself, and I see a Pulmonologist who is great, and he was able to sort through that for me. As it turned out, I had adrenal gland enlargement, but it was from a benign infection and not cancer. They can do CT guided biopsies, and other tests to rule it out, I'd think. I'd at least find out as much as I could about it. Hang in there -- this can all be SO confusing. Take care. Di

"I guess I am just so confused. I am absolutely thrilled that he is doing very well, but on the other hand I am also scared. Two weeks ago we were thinking hospice and now we are thinking cure! " Ain't that the truth! It's what many here refer to as the roller-coaster of this awful disease. When I was first diagnosed, I tried sorting out my hope from the dread in terms of a mental scale -- like the scale of justice. Hope goes up, dread goes down, and vice versa. Once I came to terms with things better, it soon just became a hope scale! I could rid myself of the dread by putting things into perspective, and one that made sense to me. Mine was that when I wondered if I would have another birthday, I figured that before the cancer diagnosis, I didn't know for sure that I'd have another birthday either. We just don't know those things -- none of us do. For now, I'm looking at my cancer as a chronic disease and not necessarily a killer. I have no idea what is to come or what kind of a future I will have, but I didn't know that before I had cancer either. My very best to you and your family. This is very difficult, and you're in the right place to share those kinds of thoughts and feelings. Take care. Di

Schmaydee -- I'm having the opposite experience from you, apparently. I don't like Vanderbilt either -- I don't like the way they treat people (and they are the only one out of literally dozens of places I've been who are threatening to sue me over a bill that started out at $350 and I've now paid down to $150. So much for the "goodness of non-profit" facilities!) and I don't like having to make my way through their maze. But this guy is a lung cancer specialist, so I'm gathering up copies of records to take to him for a 2nd opinion. I will say that if he will actually treat me and not have me sit and wait, I will probably just change over to him, and just put up with Vanderbilt as best I can. Since I was diagnosed (June 4, 2004) and started chemo, I have not been what you would call "sick" at all. I took a total of 2 of the anti-nausea pills they gave me, because I thought I was supposed to, then found out I was only to take them if needed. I never needed them. I had a minor bladder infection after the first round of chemo, and it went away quickly (well, after the 9 hour wait I had to endure just to get something to take for it - and that is another story). I didn't lose my hair. My blood counts stayed good throughout, except for platelets which were down once (85,000) just before the last round of chemo, but they came WAY up (360,000) within a few days. I never had a fever, my blood pressure was normal throughout. I have worked all through this. While I was having chemo & radiation, I would leave a little early and go home to rest for an hour or so, but could then get back up and go until bedtime. The week after I finished radiation, I started working full days. I have not felt "bad" since I was hospitalized -- just the icky taste in my mouth, the esophagitis from radiation that was more an annoyance than anything, and didn't last very long, and being a bit tired. I have the wheeze from radiation (scarring) and even it feels like it's trying to go away this week. I have no problems breathing, and no other side effects whatsoever. I have felt better the past few weeks than I have in a LONG time. My energy level has been great since just after radiation stopped (on Sept. 9th). I've been told just about what you were told, it sounds like. That what they are seeing in my chest is "tiny" -- the Pulmonologist thinks it's just scarring. The Oncologist just wrings her hands and wants more scans. With you though, they are actually DOING something. With me, just sitting on their hands after wringing them, and saying "we don't know." And according to the Radiation Oncologists, PET scans are "useless" until 4-5 months after completing any kind of radiation therapy. That would put me into January since my radiation ended Sept. 9th. The Onc. have ordered one PET scan after another, I've refused, referred them back to the Rad. Onc. to find out why they aren't "useless" any more, then had them come back and order another one, and on and on. I'm having one next week, then will see the Oncologist on the 29th, and the specialist on the next day -- the 30th. Here is what I think may happen that I do NOT want to happen -- that the PET scan will be, as I'm told, "useless." It will, as predicted, "light up" everything inside me, and the Onc. will then want to submit me to one after another invasive procedure -- biopsies, scopes, etc., to rule out what is probably no more than just interference on the PET scan. My insurance company isn't going to pay for any more PET scans (the one next week will be #2 since June, plus one CT/PET combo, plus 2 CT scans of my chest and one CT of my head) for a while, and I sure can't afford it, so there will be no choice but to just wait and see. So, it will all have been wasted -- wasted time, wasted money that the insurance will pay on a scan that they knew up front would be "useless." So, yes -- I'm a bit anxious to get a 2nd opinion, no matter where I have to go for it! I thought I'd get that when I changed to this Oncologist from the 1st one I had, but since she's in the same practice, I guess they are playing the same game. Too bad.

Schmaydee, I wish there was a good answer, but there isn't. All I've had from them for the past few months is equivocation. "We don't know." These are the same docs who couldn't wait to get out of the starting gate with treatment initially. The cynic in me says that this is making lots of money for them, so why speed up? People would faint if they saw the bills for what radiation costs, and chemo, and the times I went in there and waited over 2 hours just to see a doctor for a few minutes and my insurance company was billed $600? Sheesh. Now, they make more money by having me undergo scans -- at least 1 a month, and then they "don't know" what the scans show, so we wait another month and have another one. "It's probably scarring, but we're not sure," so wait another month and have another one. Of course, all these scans they want done in the imaging center that they own. (Interesting how they slowed down with the scans when I informed them I was having them done elsewhere. I figured taking away their financial incentive might lessen their eagerness to order so many, and it did. I've had 1 since radiation stopped, and will have another next week. Had I done what they wanted, I would already have had 3, one next week, and another one in January.) That seems to be their plan anyway. It isn't mine. And it's going to change -- REAL soon.

Well, if I may, it's been my experience that most discussions about smoking and lung cancer -- directly or second hand -- usually are about blame, even though the ultimate goal might be to discuss prevention. Sometimes it's the hidden agenda. Try thinking of it in a different way ... You are a young woman with young children at home. You've done what your doc has recommended for as long as you can remember. You've never smoked, didn't grow up in a home with smokers, have hardly been around it much because whenever you detect smoke, you remove yourself from it. You've had mammograms as recommended, pap smears, and regular checkups. Then one day, you find out you have advanced stage lung cancer. How could this happen? No one ever warned you about it, even though you were in the segment of the population in which lung cancer is appearing at a higher and higher rate. Even if you had been warned, the chances are that they wouldn't have found it too early, because due to lack of funding, they just haven't come up with an effective test for detection yet. You might get angry, frustrated, or whatever, and think you have a real cause on your hands, except that no one in the media is interested unless you have breast cancer, because it gets the most attention. In short, you have the cancer that kills more women in a year than many of the other cancers combined. More and more young women just like yourself come down with this disease every year, yet nothing much changes. Why? It's the stigma of smoking that is permanently affixed to a diagnosis of lung cancer. And as long as that continues, people who never smoked or who were told they would be better off if they quit and believed it, will continue to be caught in the trap of this disease -- the catch 22, in that it's a huge killer, yet not many people in the world really care, because they tend to see it as self-inflicted. Remember when AIDS first got started? It didn't get much attention or $$ until it started hitting white, middle and upper class people. Lung cancer probably won't get much attention either until the number of non-smokers who get it equal or surpass the number of smokers. If left unchecked, it may not be too much longer before that happens. And that would be saddest thing of all, because after all, not many of the discussions were really about prevention, were they? At their core and underneath all the political correctness and the guise of prevention, they were really discussions about blame. And in the meantime, all the non-smokers out there get stuck in the same boat as everyone else. I don't know if this applies to the poster here or not, but generally when I hear these kinds of questions, the real question is this: "Please give us at least one tidbit that we can use to link second hand smoke to anything." Lots of people have tried to do that for a long time now, and have come up blank. And maybe a moot point anyway once they figure out if the genetic link holds the key to cause and prevention, whether a person is a smoker or not. No holds barred, Di

Just echoing what Becky said. It is UNBELIEVABLE to me every time I hear of yet one more doctor wanting to "wait and see." I just wonder if they'd want their wives/daughters/sisters, etc., treated like that? Good grief. 2nd opinions are always good, they say, and this sounds to me like an excellent reason to get one ASAP. Di

Remember the comedian Andy Kaufman? He died of lung cancer and never smoked. Some speculated that it was the time he'd spent as a stand up comedian in smoke filled clubs that caused his cancer, but there were no known connections.

You and I use the same places, just opposite sides of town. I have an appointment at Vanderbilt on the 30th, so will see if they want to treat me over there! Seriously -- I had my last chemo on Aug. 22. I had the last chest radiation on Sept. 9th. I have had NOTHING since then. Nothing. Nada. Well, I've had scans out the wazoo, and then hand wringing and equivocation, as in "Well, it could be this or it could be that ..." -- yada, yada, yada. If there is still cancer there, then I should be in 2nd line chemo or something, wouldn't you think? If not, then I should have already had the PCI and been done with it, wouldn't you think? They said this cancer was "aggressive" at first, yet now they seem content to just sit on it and order scans every month, and then more scans because they don't have a clue what the last ones show, and on and on. I realize that medical science isn't exact, but my survival depends on someone DOING something rather than just sit and wait and say "we don't know." I hope the lung cancer specialist at Vanderbilt knows better -- I'm counting on it. And if he does, it will be my pleasure to go to that group of oncologists in person and the radiation oncologists and tell them that I'm changing providers and why. (Can you tell I'm more than a little miffed about this? ) Di

Oh my. This is reason #542 why I never had kids.

I think you took the thoughts right out of the minds of so many people and then just put them right here for us to read. Thank you!! Di

Gosh - it is SO good to hear from you again! You said: "I do feel some sadness from time to time over the things I can no longer do, but I try to focus on those things I CAN do and am constantly on the lookout for new things to occupy my time and mental energy." You do so many things I can't do! For one, I bet you know all the different kinds of birds and critters that come into your yard. I don't know blue ones from brown ones from red ones. You can also uplift so many of us here with the amazing way you have of putting words together. THAT is to be envied. Take care of yourself. Di

Schmaydee -- if you're being treated by the same group I am, let me say that I am SO impressed that you're having PCI, since they won't do anything with me except wring their hands, then sit on them and make hmmmmmmmm noises! I'm just so glad to hear from the 2 of you in the midst of this treatment, and that you're both hanging in there. YAY!!! Di