SDianneB

Yanno, a girl just can't get no justice in this world! Seems like if the hair has to go, it could at least go from the legs and underarms, but noooooooooo ... just the head. Tttthhhpppttt. This morning was the freakiest so far - my mental fix on losing my hair has been really solid for a long time, but when I actually see it -- yikes! I have hair covering about 98% of my head still, it's just getting really thin. I have a few really neat caps, and there is hair sticking out from underneath still. But when I look closely, I see the bare skin around my ears - ack! (The worse spots so far.) The good part about that is that I can actually treat my sore scalp now -- it's a little itchy and tender from the radiation. Now that I've discovered that the A&D ointment works really well on that, I guess I'll just go after my scalp as it becomes visible! But, what the heck. It is a small price to pay, huh .... Di

(Dontcha love those bumper stickers that say "My karma ran over my dogma." !! Or this one -- "My dogma p**d on my karma." ) Yanno Becky, sometimes you read my mind! When I began stewing about my hair, it occurred to me that this was at least something I was sharing with others going through the same thing! Seriously though, by last night, I began thinking of it in a different way -- as in having the opportunity for a whole new head of hair -- awesome! Just how many times in my past did I get SO frustrated trying to get my hair to look *just right* and wish I could start over with new hair? Well, here's my chance! Also, the caps are great -- WARM! I even like the look, and it's amazing how fast I get out the door in the morning without having to mess with my hair. (I do still have hair covering my head, but it's thinning -- probably in another week or 10 days or so, it will be gone if it continues to fall out like it is now.) I also discovered that the gooey moisturizer I was putting on my face rash was good for moisturizing, but wasn't doing a thing for the rash. So, I started putting A&D ointment on it -- yeah, the stuff they use for diaper rash! It did the trick -- it is MUCH better today, and doesn't itch at all. You are exactly right, my friend -- I just need to FEEL out the feelings I have, because they usually go in a better direction once I do that. Di

Been there, done THAT. Sheesh. My sister and I had a little go round recently, because of something she says (repeatedly) about when I was in the hospital. Once, when the pulmonologist was leaving my room, she asked him about me smoking. I wondered why at the time, but didn't say anything. (This is the sister who will hog all the time with the doc and ask what she wants to know, and then later act like I know all I *need to* -- feh. ) After that, she tells everyone that she asked him "just in case" I wasn't planning on quitting smoking. So, I finally confronted her about this and asked why she thought anything she said or did would have any impact on my decisions in that regard? After a while of the standard song and dance smoking lecture from her, I finally reminded her that I am an adult -- all grown up at age 51, and will make my own choices. Further, she knows now why I don't allow her to go with me on doctor visits -- because almost the entire medical establishment wants to treat me like a 12 year old, and when my sister tries it, I won't have it from her too. Of course, she loves me and cares about me, but the truth is that she had a heart attack about 2 years ago and was really sick for a while -- much sicker than I've ever been. And as bad as cigarettes were and are for me, the stress she keeps herself immersed in 24/7 is worse for her with her heart disease. Do either of us *deserve* what we got in terms of illness? No, I don't think so. But it is a consequence of the way we led our lives, and so we have it to deal with. I told her that since I DID stop smoking, that it's now her turn to take care of herself with the same kind of conviction she had just after the heart attack. We'll see if it made any difference. Interestingly, when she was sick, there were people lined up at the door with food, offers of help, etc. -- for months. While I was in the hospital, many of those same people would call and talk to her about me, but not talk to me, and I saw about 2 of them -- briefly. The rest stayed far away as if I were contagious. Unbelievable. Di

Rich, you ask about something that can be SO complicated! This is a thumbnail of how these things work most of the time -- First, the type of plan you are in may be one not covered by state law, so no matter what your state law says, your plan doesn't have to comply. That is what they call a self-insured, or self-funded plan, covered by federal ERISA regulations. ERISA, among many other things, exempts plans from state laws concerning insurance, and came about mostly so that large employers who have employees in more than one state weren't burdened by having to follow up to 50 potential sets of state laws. Even if your plan is an ERISA plan, you are entitled to copies of what they call "plan documents." They are required by law to make these available to you, so ask for them. Also ask what kinds of agreements they have in place with their providers as to your being billed for excess amounts. An ERISA plan may not be subject to state laws, but may operate just the same as a non-ERISA plan in terms of provider agreements and contracts that determine what you do/don't pay. If your plan isn't an ERISA plan, then the amount you and the insurance pay is probably part of a contract between the provider and the insurance company. If the agreement calls for the provider to render services at the agreed amount and (like Cindy described) you pay a percentage, then that would be all you have to pay according to the contract. This is what you will need to check on -- what the provider contract says. They probably won't let you have a copy, but the plan administrator can surely help you with it, and maybe intervene with the provider if necessary. You can probably contact your state insurance commission to find out what, if anything, the law in your state has to say about this, but if you are in an ERISA plan, it probably won't matter what the law says. Just make sure to keep copies of everything and write down names, dates, times of people you talk to and an outline of what they tell you. Good luck. Di

Welcome Jackie. Not much for me to say after all the good words these other folks have posted, so I'll just extend my best wishes to you and your family that you get through this and come out on the other side even stronger. I don't think there is anyone here who hasn't had those feelings of dread on at least a few occasions, and it's so easy to let it take over when your usual defense systems are a bit down. Hang in there. Take care of yourself too. Di

We're at the (almost) end of another year - my how time flies! As the television shows review the top events of the year, I usually reflect on my own. For obvious reasons, 2004 will go down as a monumental year for me. (DUH! ) Perhaps the most amazing thing to me is that I'm ALIVE. I'm feeling good. I'm working. My daily routine wasn't shaken so very much in spite of a serious illness and somewhat toxic treatment. I read Dean Carl's post about "survivor guilt," and said a silent "Amen." I sometimes feel guilty because the chemo/radiation didn't make me sicker -- because I didn't suffer like so many people. Now, I think it's because I was supposed to help others. Someone has to be on their feet and strong, and I guess this time that was me. There will be something in that for me in 2005 -- I just know it. I'm going to see about volunteering at the cancer center where I've been treated, and see where that goes. If nothing else, I may be of help to someone else going through this, and hopefully can devote some time to other lung cancer patients. I will have my comeuppance though, because as I sit here, my hair has started to shed! (Didja hear that, Addie? ) It started a few days ago, and just sheds a little every day. Today, I still have plenty of hair, and you can't tell it's coming out unless you look around my ears, and that is still covered up with hair from the top of my head. At this rate, it will take a month for it to all come out! Guess I'll have to do what Schmaydee did and just have someone shave my head and be done with it. (I figured something was going on, because my scalp began to itch, and I suspect it's a little irritated from the radiation like the sides of my face are.) I'll probably spend NY eve just like I usually do -- alone, and in reflection. It's always been a quiet time for me, and one where I review the year and sort of give myself a grade for the year. Happy New Year to you all, and here's hoping we all make it for as many more as we can! Di

Dean Carl, I always love it when you post - thanks so much! If you are a statistic of any kind, you are THE ONE who is making the old stats be wrong, and that is a terrific thing! Just set 'em on their collective ears! You are such a "tuned in" person -- so aware of the beauty around you and within you. Just think of the guilt you'll have if you quit posting to us and we have to go without reading your inspiring posts! Good to hear from you, and I hope you continue to do well. Di

Alice, you just take care of yourself and rest - you'll get through this. I hope you have a peaceful and restful Christmas! Di

And from another aspect ... I didn't have a port, because where I'm treated they don't like to do them unless they are necessary. My veins held up well, but I wasn't getting stuck that much really. I got the Carboplatin IV about once every 3 weeks or so, but took the Etoposide orally for 10 days each round. When I'd go for chemo, they'd draw my blood and use the same site for the Carboplatin IV, so in 4 rounds of chemo, I was only stuck 4 times. If I'd had any trouble, they would have been very willing to put in a port, but I just didn't need one. Since diagnosed in June, I had 6 scans - yikes! 3 CT, 3 PET. Interestingly, the CT scans showed mass -- as in the size of the initial tumor and as it decreased in size, but continued to show "something" that turned out to be some scarring from radiation. The 1st PET scan showed uptake exactly where the CT showed the problem areas. The 2nd PET scan showed significant resolution, and again jived with the CT results. The last CT still showed the scarring, and the PET scan I had just after that showed NO uptake anywhere except for minor "expected" uptake. It's difficult to say *this* or *that* is the way, I guess, since we all seem to be so different in our experiences! Di

YAY!!! It's over!!! Happy dance ... lalala. As I type, the mask sits next to me looking SO very innocent, and not at all like the instrument of torture it was for 12 treatments! People hang moose heads on their walls, so I guess I could hang my own head form on the wall, huh. (NOT an idea the home decorators will grab onto, I'm sure!) The nice people at the Radiation Oncology treatment place -- I'm so very grateful that they do what they do for all of us. Don't you know that job has to be a bummer now and then, seeing one cancer patient after another? But, they do it, and with smiles on their faces, and caring in their hearts, and they help us immensely. God bless them all. Last night, my kitties were restless for some reason. Tootsie always wants to sleep on my chest with her butt in my face. I push her away, she comes back, we repeat that a few times, and she gets mad and jumps down. About the time I'm dozing off, she jumps back on me -- THUD. Owie. We repeat our routine, until the the next time I'm about to doze off and she jumps on me again. THUD. Owie. Finally, she settles elsewhere, and I go to sleep, until 2:30. Button wakes me up by throwing up on my hand. Eeeeuuu. I have to get up, clean all that up, then go back to bed and finally get some sleep. I'm pumped this morning though, because it's the LAST treatment! Rad. Onc. says I'm good to go with him, and no need to follow with him unless I need to, or if one of the other docs thinks I need to, but no real reason to. I told him, no offense, but I didn't want to be coming back there at all, unless just to visit! Hair is still in place for some reason, and he says that it may stay put if it hasn't already started coming out by now, but the next few days will tell that story. I have a slight rash just above my left eye that is a little itchy, but I've been keeping moisturizer on it and it doesn't bother me. Other than that and being sleepy this morning, I'm good to go. It occurs to me that I'm finally done with the "standard" treatment, and have done all I can do to increase my survival odds. When Schmaydee asked the other day if there were long term survivors out there, I thought of Lance Armstrong. When they diagnosed his cancer, it was advanced testicular cancer that had spread to his abdomen, liver, lung, and brain. Wow. He did ok for himself, huh. I hope I can do as well, without the extreme bike riding!! So, anyone out there reading this, I hope you make a well informed decision if it comes to you having to decide whether to have PCI or not. I'm ever grateful to Addie especially, but also to others who so kindly shared their experiences, and to the people new to the forum like sweet Alice and Mouse who are sharing theirs, and to others who may come here, and keep on sharing until someone finally eradicates cancer from the face of the planet. God bless you all, and I hope each and every one of you have a Merry Christmas! Di

David & Karen -- hope you two take the much needed rest so you can get back to top fighting strength. As if this disease isn't stressful enough, add the holidays, winter weather, and umpteen other life things, and it's no wonder we get knocked off our feet now and then. Take care, the both of you, and I hope you enjoy your Christmas in a reclining position!! Di

Yay Sandy!! Ya done good! Now, enjoy your holidays!!! Di

Fay -- of course you and your son both are in my prayers, and will be sending good thoughts to you. He's young, and probably tough as a boot, so I believe he will do well. Hang in there. Di

Peggy, I am SO happy for you both!! Wow. Such good news, at such a special time!!! So, when and where do I show up for a ribeye? Yummy. Please DO share your news - always. It's not just *your news* yanno, it's you letting us know what is going on with you -- the good and the not-so-good. Merry Christmas!! Di

Marion, I'm so sorry you lost your little friend, Baby. Not that many years ago, I had 6 cats, and am now down to just two. Each time I lost one of the older ones, I mourned and now I remember them distinctly - each one so very different. The 2 I have now (in the picture) were restless last night, so I didn't sleep too well. I was ready at about 3:00 a.m. to evict them both from the house, just after Button threw up in my hand (ick), but whatever would I do without them? I know you are sad and will grieve for this kitty, as you should. They mean so much to us in the little time we are privileged to have them. Sadly, Di

Don & Lucie -- I hope for the BEST of holidays to you both. You two have been one of my many gifts this year, and I'm truly grateful to have come to know you a bit through this forum. May God bless you and yours this Christmas season. Di

Alice - I'm so glad you left us a note today!! And glad to hear you're hanging in there. I know this is difficult for you, but in spite of your fatigue, it sounds to me like you are doing VERY well, all things considered. I met a new patient at the Rad. Onc. today -- in his 70s. He said the chemo and first radiation nearly did him in, and he thought that he'd just as soon be dead as bad as he felt. But, he hung in there, and looked super this morning -- said he'd had 6 tumors in his throat. Ick. Oh well. You and I are hanging in there, huh!!! Happy holidays to you, sweet lady. Di

Cyndy, I'm so very sorry for your loss. In your words, I read your affection and kinship with this wonderful man, and I see that the evidence of that is all around you in the presence of your children. He affected people here too with his daily battles and with you sharing them with us. I know you will have a funeral that will do him proud! Wish we could all be there with you to hold your hand, but will have to just send cyber hugs. Take care of yourself. Di

Shelly, I hope you have a wonderful holiday. It's time for you to have some joy in your life, and I hope the holiday season brings you a lot of that. Take care, Di

Addie, you are right -- what still sets me off is the grocery store parking lot during the holidays. Aaarrgghh!!! The Rad. Onc. told me that the 3rd week is the time for the hair to go. I expect it any day now! I've carried around 2 little caps in the car "just in case" it falls out unexpectedly and I'm not at home. As cold as it is, it will look quite normal to be wearing a cap! And one of our staff Christmas presents was a cap with our logo, so that will work too! Now that the end is SO very close, I'm antsy for it to just be over. And then, I want to feel perfect again the next day. Not too much to ask, is it? Di

Oh my. Number 10 done, and only two to go - YAY! If only there was a way to have #11 and #12 done all at once, I'd just have one more day! Well, one more day of treatment, and a lifetime of mush brain!! My hair is still in place (knock on wood!), and I feel about the same -- no headaches, sleeping VERY well, and no daily fatigue, although there was the one day last week when I had to leave work early and go home to rest for a while. All things being equal, I'd just as soon not put my head in the toaster every day, but all things aren't equal, are they. Only 2 more days though -- I can do that, no problem. The tech this morning says they should place bets on whether I make it to work downtown with my mask intact to show it to the people I work with, or will I just have to stop on the way and run over the bleepin' thing! So, what if? What if I'd never been diagnosed with cancer. What if this past 7 months had been just a bad dream. Seven months isn't a very long time, but I can't really visualize life without cancer at this point. Taking all this away and putting me back to where I was before would just mean I was still smoking, and would probably have cancer at another time or heart disease or whatever. Does it define my life? No, but it puts a new definition of "life" at the forefront. And not just my life -- I've learned to notice more keenly the lives of other people. The people I come across when I'm in waiting rooms to see doctors, technicians, etc. There may be things I can do such as help them by being an advocate, a volunteer at the cancer center, etc. I don't know exactly what just yet, but there is something, and I'll figure it out. I just don't want it all to be for nothing, yanno? Like, Dianne was a nice person, but she had cancer. Schmaydee asked over the weekend if anyone lived a long time with this -- and I betcha there are people out there who do, and I wanna be one of them if I can. But mostly, I'd like to know that I can help some of the others along the way so that they can see this as a chronic disease and not an automatic death sentence. (Oh, and the party was lots and lots of fun, we laughed a LOT, and the fruit salad was devine!!!) Di

That's amazing. What a reward to have had this man for your father, and he to have you as a daughter. Take care as you go through this difficult time. Di

Honestly, I don't know what to tell ya. It's a beech, huh. When I first heard my diagnosis, the Pulmonologist gave me a number -- it was my statistical chance if I did nothing from that point. Obviously not good! So, once I committed to treatment, that number began to increase. When I had good days where I could work a full day and be somewhat normal, the number inreased. With the PCI, it increased some more. I have no idea what the number would be today, because somewhere in all that, I came to see this as a chronic disease rather than a death sentence. When I began to see it as a chronic disease, the challenge became to do what I needed to do while I'm enjoying my life, rather than to think that I'm doing all this just to squeeze out a few more days/months. The people I know who are cancer survivors tell me that your life will NEVER go back to even close to what it was before diagnosis. Never. I truly understand that now. A few years ago, my sister had a heart attack that scared us all. She knows it can kill her without warning at any time, and she does what she needs to do to stay as healthy as she can. But -- her life will never be the same either. The both of us have these little clouds over our heads, but by golly, we have things to do, so we just try to manage our disease and go on with life. I think you'll feel better soon, and once you feel better and get back to work and into some kind of routine that doesn't involve chemo or radiation, your outlook will change. It's easy to be bummed out when you feel bad. Hang in there! Di

Awwww, Ginny. When we grieve for a person, it is a tribute. In our grief, our feelings are at the end of each nerve. We are giving a testament to the person out of our grief for not having them by our side. Your many testaments and tributes to your Earl in this forum made him a person that not only touched your life in a significant way, but someone I will never forget, and I think others feel the same. Di

Cindy -- what an inspiration you are! I remember stewing and fussing over the difference between limited and extensive SCLC, thinking I'd only have a few weeks ( ) if I was extensive stage as the oncologist thought. Then I come to this forum and see people like you who have battled back that beast!!! I can't wait until this cancer center has its annual picnic and survivor get together. I'm gonna be there crowing about some of you guys -- including you!! Di