Remembering Dave

Hey - Dave had the same awful headache after his first day of PCI. It turns out, after just one treatment, he was having brain swelling from the radiation and to start taking the steroid Decadron to alleviate the swelling. Decadron is often used to alleviate swelling associated with brain tumors, so if anyone tells you that, don't be alarmed. I have a friend who's father just got diagnosed with Stage IV NSCLC which had mets to the brain and he's on Decadron. I would tell your radiologist immediately. Good luck, and hang in there, Karen C.

Wenna, I'm glad you're doing the PCI. I have to tell you, it kicked Dave's butt worse than the chemo or the chest radiation, but a 10% better chance of escaping recurrence is like a gold mine, if you ask me. Glad you're dealing with the hair loss OK. Folks that say they don't want the PCI because of the potential permanent hair loss just flips me out. OK, I'd rather be dead than be bald for the rest of my life? Not sure about that one . . . but I have to tell you, Dave's hair had just started to show signs of sprouting when he started the PCI. It's been almost two months since he finished PCI and he's still as smooth on his noggin as ever. He also had some weird short term memory loss toward the end and maybe still has a touch of that. He also just felt weird - bad - but I think that subsided, too. Hang in there! God Bless, Karen C.

Hi, this is Karen, Dave's wife. We're pretty sure he has a virus. He had his blood completely tested last week since he felt so bad, his counts were OK, and nothing else showed up, so the nurses told him it must be a virus. Well, yesterday, Sunday, one week later, he had a temp of 100.5 (which is really high for him) and still feels bad - like the flu but not as bad a full blown flu. I have to think it is just a virus, and a "normal" person (one who hasn't had chemo and radiation recently) would kick it in a day. Hi, Greg - yep he had a flu shot, maybe a month ago, but he also had a pneumonia shot at his oncologist's advice, and I think that was just last Friday. Hmmm. Another thought on the hot lymph node in his pelvic area. He had posted about this, but a couple of weeks ago he had that procedure where the interventional radiologist punctured a large vein in his groin and ran a wire up to his portacath, which had slipped out of place, and lassoed it back in place. I'd bet a winning lottery ticket that the lymph nodes down there are just responding to that trauma/healing process. Would love to hear input from anyone with experience with something like this. We're seeing his pulmonary doc in about an hour about the fluid around his lung and heart. I hope he concurs with the oncologist - that is just some pleural effusion from the radiation and will go away with time. Just my two cents as a semi-observant spouse (only semi-observant because I'm juggling working full time, a two hour daily commute and a toddler who needs surgery soon herself!) Best to all, Karen C.

Greg, thank you so much for your words of wisdom. You may be right that this is just a result of all the hellish treatments we have been through. I was feeling pretty good last week and went back to work part time. Saturday I ran a few errands and Karen thinks I just overdid it but I really did not do that much. Maybe I did and this is the result, hard to tell. Again, thanks for the support and by the way.....great picture, those are good looking kids. David C

Well I have good news and bad news. Actually not sure which is which at this point. For the good news/bad news The Pet Scan still shows activity in the mid lung, could beresidual tumor or scar tissue, it showed something in the spine-T-12 which could be arthritis or degenerative, And a lymph node in the pelvis is a little hot. Since this is the first PET Scan I have had We will have to wait until I get another one done to compare against this one. Now for the Bad news--I feel like absolute crap. I had the PET Scan done on Monday. And felt like crap that day but I just figured it was because I had not eaten anything from 7:30 in the morning until 4:00 in the afternoon but actually I realize I started feeling bad on Sunday. I went to the Doc on Tuesday and they did a work up on my blood but nothing showed wrong. I have never felt like this, even during chemo and radiation and believe it or not even when I was on the Oh so dreaded steroids. I am just so week and sore and numb. I cannot ever remember feeling this way. The nurse said I might have some kind of virus which is making me feel this way. Has anyone else felt this way after all treatments have been over and done with for a few months?? If it was not for the relatively good PET Scan results I would be convinced that, well you can guess what else might cause this pain. God Bless you all. I do read the posts and you are all in my prayers. David C

Ginny, well, it might be a little before my time (I'm almost 45) but I do know the song! Probably also helps that Dave is an ex-professional trumpet player. I'm trying to convince Dave we need to replace the carpet in our living room since the puppy (puppy who is six months old and weighs at least 50 pounds!) soaked it with his pee pee - with hardwood flooring. Last summer, before getting Faith and before Dave got sick, we pulled up the carpet in another room and installed prefinished hardwood flooring ourselves, we also tore up the water damaged hardwood in our kitchen and replaced it with ceramic tile - ourselves. I told him we should do this soon and hire someone to install the new flooring. He doesn't like the idea and I think the idea of hiring someone to do something he used to be able to do quite well is the problem. I'm also trying to convince him to let me hire cleaning help 'cause it just ain't happening with me . . . Anyway, I do love your attitude, it's helping! Perspective is everything! Take care! Karen C.

Ginny, I know what you mean on all accounts. For one thing, in between holding down a full time job (which, for the first time in my life, I have gone through all my sick and vacation time for the year so any more time off is w/o pay, in fact, I was sick a few weeks ago and had to take a day off w/o pay), a two hour round trip commute, taking care of a two year old, trying to keep up the house (that just ain't happening) and keeping up with Dave and his treatment as best I can, I'm pretty darn tired all the time. Not much time for the computer once I'm home. Another thing: yep, I get people telling me how well I'm holding up, probably especially in light of the fact that I've had clinical depression before. Even Dave has been amazed, I think, until earlier this week when a bad case of PMS plus probable onset of menopause hit me, I told him I felt like I was losing it and I meant it. But I try to act like we have a future and as far as we're concerned we do. When he got diagnosed all I could think about was selling our beautiful place out in the country on the Mattaponi River and moving in to suburialand for an easier life for Faith and I. Now I'm nagging him about the addition I want to the house and upgrading to a newer travel trailer! How about that for optimism? I've told him he has no choice - I NEED HIM around for quite a long time more - so does Faith, so he's got to slay this beast! My random thoughts, I think I know how you feel, though. And I love how you call your hubbie The Duke. Or is that his name? Take care, Karen C.

Hello, all, this is Karen C. A friend I work with is out of work all week, at the hospital with her 70-something year old Dad, who was rushed to the hospital Monday morning. Her mother called and said her father would not wake up. She rushed to their house and the rescue squad was there. They thought he'd had a stroke. Turns out he has NSLC with three mets in the brain, and the brain tumors were causing the stroke symptoms. He's in the midst of testing, staging, etc. I told my friend about this board so when she's back at a computer hopefully she'll come on and at least lurk. There's many of you on here as caregivers/supporters of your parents who have LC and I think she would get lots of information and support here. It made me sick to hear of his diagnoses. I think I'd rather he'd had a stroke, but I told her, and I believe this, that LC, even with mets to the brain, is NOT a death sentence. There's lots they can do to treat him. And it sounds like they already have a good game plan in place. AND, his oncologist is in the same practice as Dave's, so he's probably in great hands. I HATE THIS DISEASE! God Bless to everyone, Karen C.

C&J that is wonderful news. Sorry took so long to reply. I also have the Plueral Effusion stuff and hopefully it will clear up itself. I hope you two celebrated the good news. David C

YIPEE!!!!!!!!!!!!!!!!!!! It worked. I re-registered and once I got my confirmation email I was able to log in using my new name and CHAT appeared!!!!!!!!!! David C

Wondeerful news Bob. What a wonderful article you wrote. Here is to many more years. God Bless. David C

Awesome news!!!! God Bless. David C

Sounds like a pretty good visit. Tell her to keep up the good work. My prayers are with you. David C

Cindy, Cindy, Cindy, I am just beginning to understand what you are saying about being a cheerleader. My prayers are with you. Please keep us updated. You have such a wonderful attitude you are an inspiration. David C

I just treid again without success. I even tried to re-register and then log on again without luck. Is it possible to put the Chat link back on theLC Message Forum Index page again???? David C

Donnie, I'm so sorry. Dads are special and yours sound about as special as they come. Your Mom sounds like a terrific person as well, giving your Dad CPR until help arrived. You are lucky to have two such special parents. God Bless you and your family. Karen C.

Definitely ask the oncologist immediately about a flu shot and a pneumonia shot. Dave's oncologist told him to get both. But we had to ask him, he didn't volunteer it. Dave's not on Iressa but it probably doesn't make a difference, but still, call up and ask. You have to ask/prod these doctors for everything! Good luck! Karen C. (wife to David C.)

Carly, wonderful! My husband Dave is going through some stuff right now - we THINK he's in remission, but has fluid in his lung/around heart, so he's getting a PET scan next week. Hearing your outcome after getting the positives on the PET scan is good to hear, I'm going to remember that if he gets any "positives" on the scan. Take care, and congrats! Karen C. - wife to David C.

Hi all, I am in a little bit of a hurry here. Have to go pick up my little Lady Bug (She hates the lady bug outfit, ha,ha) for a Hallowed Eve on the town!!!!! I just wanted to let you all know I got clean reports on my chest and head CT scans.........Still something going on in the left lung but nothing is getting bigger so again, thinking scar tissue from the radiation. I have a PET Scan scheduled for Nov. 10th. Happy Halloween to you all!! David C

Ry, thanks for the reply but I just tried again and got login error. David C

Rhonda - that's pretty wild, because our good friend who lost her husband, SHE is the organist at the church and just celebrated 45 years! And she told me herself that you can only rely on family. I will say we have one neighbor that I can call up and ask for favors just about any time and he's great, and I've only had to do it two or three times in the last six months. Mostly, if we get stuck at the hospital or something, we call him to let our dogs out for a while. We live in a rural area about 20 miles from the nearest hospital and almost an hour from the hospital where Dave gets most of his tests done, so its good to have a trusty neighbor for that, add to the fact that he's a writer and works from home so he's almost always there. I've learned alot from this experience, and I plan on BEING THERE the next time someone I know goes through this. Thanks for all the input and advice - keep it coming - and wish us luck, we get results of Dave's CT scan tomorrow morning,. Karen C.

Ray!!!! Awsome news!!!!!! Big Congrats!!! Keep it up buddy, fight, fight, fight!!!!!!!!!!!!!! David C

I just tried to log in on the Home Page and keep being told I am entering the wrong info even though I am using the same info I wrote down when I joinedand confirmed the info with my wife who logs in daily at her work. I am Automatically logged in when I am here at the posting page but am not automatically logged in on the home page.?.?.?.?.? HELP!!!! David C

Carly, this is Karen C., Dave C's wife. I believe that is where Dave's limited stage SCLC was. He had a spot in his left lung and then on the lymph nodes in the middle of the lungs. Hopefully he'll see this post (or I'll remember to remind him to look at it) and correct me if I'm wrong. He's done GREAT, so far. We'll see tomorrow and Friday just how great, when we meet with his oncologist and radiologist. You can look at his sig line and see what they did to him. but basically he had six rounds of chemo, six weeks of radiation, 15 days of PCI (which was really hard on him but well worth it if it doesn't what it's supposed to do) and every CT scan so far has been NED. Good luck, Karen C. p.s. I'm not supposed to use the internet for much personal stuff, either, but I lurk here at least once a day (I'm at work now, too!). It's the only way I can make it through most days!

MaryAnn and Don, You're both so right. I am glad to have the support we do. And I know that lots of people are well meaning and just don't understand what it's like. Although I will say that we hadn't heard from anyone at our church in months, except for when I go on Sunday and someone asks as I walk past, but any more it's just one person. The minister barely mentions it and then every week says "I'm going to call Dave this week" and hasn't. So I guess I'm a little annoyed with the whole bunch. We have one good, old friend there, the mother of one of my best friends, who lost her husband to cancer a couple of years ago, and I mean they are the pillars of that church, and she told me that the minister, especially, feels that his mission is to make sure your faith is there and strong and then moves on to the next person - his main concern is your spiritual health and if that's OK he doesn't get too wrapped up in your physical health. Now, she wasn't saying this in defense of him, I think it was her own analysis based on what she'd just gone through herself. Again, I am venting, and Dave is going to read this and tell me I'm not thankful for all we have. we have had lots and lots of support - we have an entire shoebox full of cards and letters. But they all came in a torrent at the beginning. Maybe I should go see the shrink I saw when I had miscarriages to help me make better sense of it all ! I will say that if it weren't for Dave's parents giving up six months of their lives to stay with us I don't know how we would have gotten through those six months. Thank God for wonderful family. Love to all, Karen C.