SDianneB

Becky, that is just awesome. Simply awesome. Incredible. Fantastic. WOW! Di

Is it safe to say that if I get any closer, I'm in BIG trouble? Haha!! Di

How very strange. My "normal" temp has always been around 97.5 - 97.7. On my last CT scan, they found 2 "non-specific nodules" on my right thyroid that were followed with ultrasound and the same conclusion. In about December, I'll have another ultrasound to follow up on the nodules again. (The docs seem to think these are just harmless cysts, but need to be watched.) I guess I'll find out what's going on in December. My lab work is all just about normal -- my blood counts and platelets didn't even get down to a dangerously low level through chemo and radiation, and were just about back to normal the week after radiation ended. I'll be interested to see what, if anything, develops with this now. Di

Oh, I'm still around. My mother has been here for a visit so I've not had much free time the past few weeks to post -- just here and there! I have NO idea what a CRAFT moment is, but can give it a good guess -- "can't remember a freekin' thing" maybe? Di

You mean, start a thread where we're all expected to discuss our CRS symdrome? No way!! Ha. The problem is that I don't know if it's from chemo, or just getting so danged old. Hmmmppphhh. My favorite bumper sticker: Of all the things I've lost, I miss my mind the most. Di

Ha -- you'd love the real kitties too -- I sure do! Poor little Button (on the right) is afraid of her own shadow, but Tootsie is a real sweetheart. (I'm still smacking myself for forgetting about the steroid -- OF COURSE it's what caused the night sweat! Double DUH!! to me!!!) Di

Sharlene, I'd completely forgotten about that. Yes, I had an IV with a steroid and anti-nausea drug before the Carboplatin IV. I only had a problem with the night sweat the one night I told about, and minor ones a few times, but it wasn't anything constant, and I didn't have the "red face" -- just sweaty. Eeewww!! Di

Jen, when I started the 2nd round of chemo (Carboplatin/Etoposide) I had a major night sweat the night after they gave me the Carboplatin IV. It woke me up in the night, but wasn't a "flash" because I wanted to cover up instead of throw off clothes! I had a few smaller ones over the next few days, but no more after that. I never had anything like that during the day time. Di

Jen -- I just finished 34 radiation treatments last Thursday (Sept. 10th). For about the last 2 weeks of treatment I had a "radiation wheeze" that the Radiation Oncologist had told me was to be expected. He asked about it every week when I saw him, and listened to my chest, and said it was not of concern. When I saw the Pulmonologist a few weeks ago, he said the same, and said it would only be of concern if I coughed up blood or had a real problem breathing -- neither of which I've had or even come close. It seemed to me to be creeping up my windpipe -- having started in my chest and now feels like it's almost in my throat! The Rad. Onc. says I'm doing splendidly, and that should go away on its own soon. I noticed just this weekend that it's actually better, as in I'm not wheezy all the time. It's also not as pronounced as it was for a while -- meaning not as noisy! It helps me to take a few deep breaths now and then -- almost like I'm exercising my lungs. I do this when I'm working, just sitting around watching tv, or whenever I think of it. What they call "deep cleansing breaths" are also good -- I bet lots of people learned those in Lamaze classes! It's a slow, deep breath in through the nose, and a slow breath out through the mouth. Works wonders! Now, to work on the leather skin I developed during radiation. Ewwww!!! Di

I've changed Oncologists -- officially as of Sept. 15th when I'll see the new one. It was a bit frustrating, but also humorous, getting this done. The former and the new one are in the same practice -- the new one is female, and I've heard really good things about her from my Pulmonologist and some of her patients. I called their office to tell them that I no longer wanted to see the former doc and wanted to change to this new one, and this is how the exchange went (keep in mind I was talking to someone less than half my age, sitting at the front desk smacking her gum): Her: Well, I'll need your phone number so Dr. A can call you back. Me: Why does he need to call me back? Her: Well, he'll need to approve you changing doctors. Me: Approve? Don't think so. This is America -- in case someone forgot to tell you, we get to choose which docs we see -- or not see. Her: Well, Dr. B is in the same practice, so Dr. A will have to approve the change. Me: No, it requires no approval -- trust me on this. You just let me know if Dr. B will see me or not, and if not, the Yellow Pages are full to the brim of Oncologists in this city. I'm sure I'll have no problem at all finding at least a dozen others who will be more than happy to be on the receiving end of my insurance payments. Her: Then I'll have one of the nurses call you back. Me: Fine -- let them know they have until the end of the day and then I'll be looking elsewhere. Sheesh! When I finally heard back, it was one of the nurses, and I just told her I didn't relate to Dr. A very well, and that my Pulmonologist suggested I see Dr. B. She was very nice, and just had me call in to make the appointment, so I'm all set up for Sept. 15th to see the new doc. (I informed the Radiation Oncologist of the change this morning, and guess what he said? "Well, you just don't gee with everyone you meet in life, do you! Thanks for letting us know -- you're the boss, you know.") So, I've cancelled the useless CT/PET scan Dr. A had set up for next week. As it turns out, a PET scan is useless so soon after radiation anyway -- Radiation Oncologist says I should wait at least 4 months before having a PET scan, and that everything will probably light up before that time from residual radiation. (DUH!) He also says that I need to wait at least 30 days to have even a CT or an MRI because the radiation will continue to work for that period of time and the test will be more helpful to them. (Although I couldn't prove it, I felt like Dr. A just scheduled the CT/PET scan because it's done at their imaging center, so would put some $$ in their pockets even though it would be useless. Given his personality, it would have given him probably 20 more things to be negative about, so he would have been happy at my expense. Haha.) So, I have the last radiation treatment next Thursday - yay! I'll see the new Oncologist on Sept. 15th, and my 91 year old mother (who is in much better shape than all 3 of her kids!) will be here Sept. 13th for a 2 week visit, so life looks pretty good right now. Yes, I know this illness is unpredictable and I know full well not to expect each and every little thing to be positive from here on out, but by golly, I will be LIVING and not DYING like I thought a scant 3 months ago. So there.

Fay -- I'm about at the end of radiation too - yay! Only 3 more treatments left for next week, and that's it! Actually, in a month, they will decide whether to recommend PCI or not, but no more chest radiation at least! The techs gave me some fabulous lotion to put on my back where I had a rash and alligator hide -- it's called Aquaphor. It's more of a creme actually -- I found a big jar of it at Walgreen's for around $16. I'd used A&D Ointment on it a little too, and that helped, but the Aquaphor is better under clothing, even though it is somewhat "greasy." After only one day, I could tell all the difference in the world. Sorry about your poor toes -- ouchy, huh! Di

Unless you woke up in a different country, this is still the USA and you still get to choose the practitioners you want. In my opinion, you need to be reporting these guys to your County Medical Society (if you have such an organization where you live) and to the AMA, and to whatever state licensing body you have. It may not do you any good in the short term, but if they begin collecting such complaints, yours may just come back to haunt them one of these days. It just makes me furious when I'm told I "have to" do something in order to fix something created by someone else! It's like the phone company -- they screw up something on your account, you call to fix it, and they tell you all you "have to do" to get it fixed!! grrrrrr. I've started telling them that I don't "have to" do anything -- this is their problem, they can deal with it, and in the meantime this is what WE are going to do for ME. Good grief. I hope you get some help, and soon, and that someone drop kicks these jerks one fo these days! Di

Dear Schmaydee, As luck would have it, we were diagnosed with limited SCLC on the exact same day, June 4, 2004, I live in Nashville too (assuming you mean TN!), and was hospitalized with pneumonia, although I didn't have a collapsed lung - not yet anyway. You and I are probably very close in timing on chemo/radiation. It didn't knock me down totally, and I didn't experience drastic side effects like so many do, so my opinion is that treatment was most definitely worthwhile, and I'm glad I chose that option. If you'd like to talk more, just send me a private message and we can share phone numbers and maybe get together and I'll gladly share with you my experience and we can hold each other's hands if need be. With all the other similarities, we may be going to the same group of docs and to the same treatment centers! Yes, there is a lot of hope, I think, and I bet you can find some of it once you get past some of the associated dread that comes along with such a diagnosis. Di

Well, as someone wisely pointed out to me this week, much of this is just based on gut feeling, huh. There was some question about adrenal gland involvement with me at first, at least by the Oncologist, but no symptoms, nothing showing on any tests, etc. They were just enlarged. Given the conflicting information I was getting, I did my own research and found out that a person can have an adrenal gland removed and live without it quite nicely -- go figure! No, it isn't at all like having an appendix removed, but it can be done, and is done quite a bit. Given what I learned, I might make the same choice as you in your situation, especially if I had that gut feeling telling me to! Man, oh man, I do understand the scary part though -- wondering if you're doing the right thing. Whew. But -- it sounds to me like you have checked things out many times over, and that you have enough information under your belt to have made an informed and intelligent decision. Can't beat that with a stick! Many good thoughts and prayers for you, and my very best wishes. Keep us posted, ok? Di

My 2 cents worth: The battles your mother and her caregivers will undergo are far too important than an Oncologist with a lousy attitude, believe me! I'm just a tad behind Addie in diagnosis, and just finished 4 rounds of chemo, dumped the Oncologist, and will be seeing a new one for follow-up. The one I had I called "Dr. Gloom & Doom" because of his negative attitude. I also found out that he was about to withhold treatment (radiation) because he had a "hunch" about adrenal gland involvement that didn't exist. I had absolutely no room in my life or in the fight against this disease for that jerk, so he got the heave-ho. The Internist/Pulmonologist I see and the Radiation Oncologist both told me -- quite enthusiastically -- that they are all fighting for me, and working with me for a cure. Wow. I'd never heard those words or anything close from the Oncologist -- a cold fish. My chemo started just a few days after diagnosis -- I knew there was a tumor on 6/1/04, SCLC was confirmed on 6/3/04, and chemo started on 6/5/04 with IV Carboplatin on my last day in the hospital. We live in a country where you DO get to choose the health care providers you see -- including doctors. If you don't have a good feeling about someone on your treatment team, then dump them, in my opinion! I can't tell you how many sleepless nights I spent at first, worrying not only about the unknown and treatments, but about all the ocnflicting information that was coming from this Oncologist and the other docs. Now that he's out of the picture, life is SO much better! You can and probably will read so much negative about this disease, and it is what I call a "scourge," but I decided early on that if there was even as little as a 1% chance of long term survival, I wanted to be in that 1%!!! That has been my goal all along. There are others like me too -- we'll take your mother with us and include her in our 1% groupie if she wants!!! Di

Here's my advice: Find out about the new plan -- does the employer offer self-insured benefit plans? If so, then they are more than likely covered by federal ERISA law rather than your own state law regarding eligibility and coverage. If it is an ERISA/self-insured (also called self-funded) plan, then request, in writing, a copy of the plan documents. (ERISA law obligates them to give these to plan participants on an annual basis or upon request.) You may need to take the plan documents to someone familiar with insurance terminology and coverage, but it will be well worth it to know exactly what is/isn't covered in this plan. If it isn't an ERISA plan, then request a copy of the plan documents/policies, and do the same thing -- have them reviewed and analyzed as to coverage, eligibility, etc. While going through these documents, make a list of all questions you have, even if you think they may be silly! Then, go to the plan administrator or person in charge of benefits with your questions and ask them all and make sure you get answers. If it isn't an ERISA/self-insured plan, your state will have an Insurance Commissioner and an office that oversees compliance -- contact them if you think the plan has rules that are contrary to state law. Also, contact someone in a large hospital in your area, in the business office. They know all the resources in the state, will probably know all about the plan already, and can tell you about state & ERISA regs pertaining to claims payment, because they deal with this stuff every day. There's no such thing as too much information about health insurance! Di

Well, after reading all this, I'd just like to say that I am perfect, am never negative, I always say just the right thing at the right time and in the right way, and I am, of course, better than anyone else on the planet. JUST KIDDING!!! I do so enjoy reading all you have to say about your lives and your experiences and your families, even the negative when it rears its ugly head, because that's a part of it, I think. I'm glad I found you all and this place. I'm also totally clueless about whatever negative has allegedly been going on around here, but me being clueless is NOT a new phenomenon! Take care you all -- I NEED you!! Di

Well, of course there are miracles to tell about -- each and every one of us posting here is a miracle in one way or another. At least I think so! Ditto what Addie wrote -- she and I are very close in stories and timing, although I'm a little behind her schedule. I will admit that the "dread" side of the scale sometimes tends to get a little heavy, but when good sense returns, I remember that I'm blessed to just be here on earth anyway, for whatever time period that may be, and that I had no guarantees of even one more minute/hour/day at any point in my life, nor will I ever. I see my survival a day at a time -- just as I always did. My plans got put on hold when I got sick, but being a human, I will continue to plan for the future and hope for the best, but not fear the unknown as that's something I can't control. Best wishes to you, Dawn. Dianne

I'm so very sorry. God bless you all. Dianne

Ginny & Earl -- as sad as this is, and it truly is sad, it is also uplifting in that here are 2 people who obviously care so very much about each other, carrying out this battle together, being together, you knowing each and every feeling that he has when he has it, working with outside care givers for his benefit, and it's all about the love and devotion you have for each other. Wow. Should we all be so fortunate to have someone like that in our lives. I have such tremendous admiration for the both of you, and hope that his days remain peaceful. Dianne

You've got the prayers and good thoughts coming your way, Betty. Stay safe and let us know how things are going when you can. Dianne

This is "good news" for me, as it's about some things that have bubbled around in my mind lately, and I've finally made some decisions that I think will help me stay on a positive course. Today marked the halfway point in the radiation therapy, and I had a CT scan this morning so they can plan out the remaining half. Last week I was to have started round 4 chemo, but platelets were down to around 85,000 and they wanted them around 100,000 for chemo, so put it off until yesterday. Platelets were "well over 300,000" - wow, what a difference! To coincide with the end of the chest radiation will be the follow up CT/PET scan and a "see where we are" meeting. I will see the Oncologist, and then back to the Radiation Oncologist to discuss and schedule PCI which will start after I've had a few weeks break from chest radiation and chemo. So far, so good, but now the little pinches of fear have to do with withdrawal, I think! As long as they are frying my chest every day and I'm taking chemo, I feel like I'm DOING something to rid myself of the bad cells. When that slows down or stops, I am prepared to have to mentally adjust to the difference. Oh well -- will come to that soon enough, I guess. The big decision I've made is that once I'm done with this last CT/PET scan and have seen the Oncologist (Dr. Gloom & Doom), I have an appointment the next week with the Pulmonologist -- my hero. When I see him, I am going to tell him that I prefer to follow up with him and my primary care doc for diagnostic matters, and if I need any more chemo or need an Oncologist from then on, I want someone else. I've really had it up to *here* with this Oncologist, and from what I've seen of some of the others in his practice, he's really just a cold fish, and I don't need someone like that on my team. A different Oncologist in that practice would confer with him about the treatment anyway, and they all work together on protocols, so I will be just as well off technically speaking as I ever was. If this Oncologist wants to know why I made this decision, I have no problem telling him, as I will be telling the Pulmonologist and have already told my primary care doc. I was just mentally exhausted with all the "what ifs" and 2nd guessing I was doing with this Oncologist, and decided that I did NOT need that in my life, and that I was going to get rid of it once and for all. So there! ttthhhppptttt As for now, I'm still feeling good -- was feeling extra good in the few days I had waiting on platelets to come back up! -- have good strength, still able to work, hardly any side effects, still have my hair (or will have it until they hit me with PCI!!), and feel really positive about my life in general. Before being attacked by the scourge, I had no guarantee about how long my life here on earth would be, and I still don't have one, and don't want one. I will do what I can as long as I can, and that's all I can do. Dianne

Cathy -- welcome! This is a good place to be if you have to be here, but we all wish we had something else in common besides cancer! From your last post, I picked on one thing -- about people having discussions with your physicians behind your back. NO NO NO!! There are privacy laws, yanno! Each and every time I've been to see a doctor or gone to a new place, they give me one of those and make me sign something that says I received it. (And yes, I DO read it before I sign.) Also, the doctors offices had me fill out a form that told them exactly who they could/could not discuss my case with. If yours don't have that, then make one up for yourself and take it to them, and then insist that it be a part of your record, and insist that they abide by your wishes. If you don't already have a durable POA/living will, get one and give them a copy of that too, so there is no doubt who they are to be in contact with, based on what YOU want. As to smoking? Well, on the day the Pulmonologist told me I had a tumor, I had the thought later in the day that I could go home, just smoke one or 2 "last" cigarettes, then quit. Yeahright. It's like alcoholism -- I didn't want 1 or 2, I wanted 20 or 25 or more. Once that little speck of truth caught hold in my brain, I called the neighbor who was taking care of my cats while I was in the hospital, told her where all the cigarettes were in my house, and asked her to just pitch them all so it wouldn't even be an issue. Once we knew what I had for sure, the Pulmonologist said that if I wanted to smoke when I got home, it probably would have no effect on what I have now, but my body had just told us that it is genetically predisposed to react to smoking in a certain way -- cancer. He said his concern would be that to continue smoking would just mean that my body would be working on another tumor, and did I want to go through this again? NO WAY! The Radiation Oncologist said later on that smoking impedes healing and people often suffer from bronchitis and other infections that slow down the treatment process. Not to mention that I spent 5 days in the hospital and had all the chemical residue from smoking mostly out of my system, so why go home and just put in back in there again? Besides, it was difficult enough to breathe until the pneumonia went away, I couldn't even imagine trying to inhale a cigarette. DUH! Finally, the thought I put into my mind at that time and the one that has remained there through today is this: I chose to commit to treatment. If I choose to smoke, then that means I can no longer keep my commitment to treatment. It means that I will just be wasting my time with all the chemo and radiation and nutrition, etc., not to mention a heck of a lot of money & energy. It means, in short, that I will have chosen to die rather than try to live. I never smoked again after leaving the hospital, have not had cravings or urges to smoke because of that thought that comes into my head whenever I even think of smoking. I walk through crowds and smell cigarettes, and they smell good to me still, but to me, they mean nothing but death. Continuing treatment means life, smoking means death. Maybe you can formulate your own thoughts to replace mine -- it helped me a great deal. Dianne

"Can you belive the doctor at U of Chicago actually said he was "insulted that we didn't accept fully his recomendation and had questions regarding his plan". Oh, then he tried to back track and say he was joking....NOT FUNNY! What normal person doesn't get a 2nd oppinion when it is the person's life and or quality of life at stake. WHO THE HECK SAYS THAT!" Unfortunately, yes, I can believe it. I also recognize it as a definite clue that a 2nd opinion MUST be sought. I think if it were me, I'd get away from a doctor who said that REALLY fast, no matter what. Part of what I don't like (personally) about my Oncologist is his incredible ego, but he hasn't crossed that line with me -- not yet anyway. Professionally, I know he is really, really competent, so I'm still with him for now. If I ever heard him say anything like that, I'd be outta there in a minute. Sheesh. Dianne

This is so very sad. In a strange way, it's rather shocking having not ever met this person, but to have read his words and to have learned a bit about his tenacious battle for life, to discover that he will not be posting again. I read at times that s/he has "lost the battle," but I don't believe that for a minute. A battle well fought is never lost, I don't think. I think that someone like David A who had such a good humor and a great spirit about him on the internet had to have had the same things tripled in his real life. He "lost" nothing -- he was a definite winner in my opinion, and an encouragement for myself as I fight my own battles from day to day. I hope his family takes some pleasure from knowing that their loved one had meaning in the lives of so many virtual strangers in this forum, and the realization that he had another "family" here. May God bless and be with you all in this very sad time. Dianne