Remembering Dave

Hey folks. I have been trying to post this all week. I just sat at the computer all week last week trying to write and just sit soooooo Thank you so much beth forposting for us. This is an excerpt from an email Karen sent to Beth which pretty mucc explains whats is going on. The pain is a little better and I actually went outside yesterday and watched my Dad do some yard wrk. You are all in my prayers daily , Please keep Karen and me in yours. "Dave's not doing so well. His pain is uncontrollable, despite heavy use of oxycontin, oxycodone and gabapentin (nerve pain pills). He got a brain MRI and we saw the neurosurgeon again on Wednesday and got the news - three confirmed brain tumors. He gets a head PET on Thursday, the doc puts it before a clincial review board, and then we see him again next Friday to discuss the gamma knife, which he will more than likely be having. Can't find a source of his trigeminal nerve pain in his face, so will probably inject an alcohol block into the facial nerves to numb them, will try to do it along with the gamma knife but he has to see, he says doing that procedure in the gamma knife OR will probably drive the staff crazy with set up (smile). anyway, he hasn't had chemo since early April - the topotecan was killing his blood counts and, according to Dr. S., killing HIM, so he pulled Dave off the topo and was going to start him on something else yesterday, CHOPS is the cocktail - less effective, but less killing also. He used the term "qualify of life" which made me think "not much time left". "Thanks for asking about my mom. she had her gallbladder and half her liver removed last Wednesday. so I guess you will be joining her in the empty gallbladder club soon. everything went well, she spent six days in ICU and we could only see her for a half hour at 10 am, 2 pm and 6 pm. so instead of just staying at the hospital with her, I did alot of running back and forth, which was complicated over the weekend with Dave's parents gone to visit his sister, they took Faith which was a great help. But she went into a regular room on Tuesday and came home last night, for a 72 year old woman who's had her fourth major surgery in less than a year, she did great. I am so very proud of her! Fired the real estate agent for gross nonperformance and got a new guy, long story, but I KNOW he will sell the house fast. So am busy busy busy trying to get the house ready as he requests, our old agent really dropped the ball on having us prep the house and especially showcasing the riverbank properly. new guy is bringing out some high school football players that work on his farm for him to do yard work and stuff to get the riverbank looking sharp, Monday after school. after that I imagine we'll hit the ground running, we're running short of prime selling season for riverfront property. David C

Doug, a lot of good advice given here. I did not have swelling problems with the chemo cocktail you are having but no one person has the exact same side effects. I have run the gamout from washing all the sodium out of my system to pretty bad dehydration ( I was diagnosed by extremely low sodium). Guess the best advice I could offer is to go in and insist on a complete blood work. That should determine if you need a diuretic or maybe go on a fluid restriction. David C

Ok,Ok.....Good news and bad news here at "C"acres. Yes, last week was very rough on all involved here, emotionally and maybe even causing a little physical turn for the worse on my part culminating with a lovely Friday night date with Karen to our local ER. Don’t worry, there was no target practice taken at anything except that dern tree stuck in the river and the Kitty (JUST KIDDING). We pretty much had a good old-fashioned clearing of the air with everybody involved, long overdue. I think it did clear the air and brought everybody back onto the same page with the same objectives and goals. Yes, some feelings did get hurt among the masses at the table but communication around here has dramatically improved. Now all you guys out there, here are some tips on how to show your lady a good time on a Friday night. Now this takes some planning and some good old bad luck. All joking aside this is what happened. I had been feeling run down all week progressively getting weaker and more tired and started getting all over body pain. I did have an appt. at my Onc.s office on Wed. and met with the N.P. who is also very good. I was supposed to get Chemo but I decided to skip it so I could build up some energy for our trip to Myrtle Beach. We went over all my medications and dosages, and adjusted a few and got a few new ones (oh joy) . Thursday and Friday I started feeling worse and worse. I laid down on Friday at 2:30 and slept to about 7:00 when Karen got home. Now, when I laid down I was sweatting my A$$ of so I turned on the A/C. When Karen got home I so cold I was shivering she said ( the outside temp was only 50 degrees). I had a little bit of phlegm but I could not get a deep enough breath to cough it out. When I would try and get a good deep breath I would get excruciating pain in my left shoulder blade and in my chest. We took my temp. and it came in at 101.8!!!! Now listen close guys, here is my advice on showing your sweetie a good time. Go to the Emergency room. They have great vending machines and it is a nice quite place to hang out and talk and try and guess how sick all the other people there are. Actually we only had to wait about 30 minutes before we got called back. The Nurse was fabulous and we liked the Doc we had. I had a chest x-ray and then they sent me back for a CT scan due to they saw something on the scan they said could be pneumonia or might be a blood clot. Turned out it was pneumonia. Only time in my life I was thankful to have Pneumonia. They gave me two different super kinds of antibiotics through the huge bag of IV of fluids they were giving me. Karen and I had another lovely date at the ER lasting from approx. 7:30 pm until they cut me loose at 4:00 am.I have orders to get in touch with my Onc. on Monday to see about maybe getting a blood transfusio due to my counts. We did not even have to go to the after-hours clubs to keep getting those fluids. I woke Saturday and felt 1,000 % better ( the day we were supposed to leave for Myrtle Beach) . Today we went to Williamsburg and met up with all of Karen’s family for Mommy's Day at one of the best seafood restaurants I have ever been to. I loooooooooove seafood and know a good shrump when I see it! I would say am doing better. I felt better physically than Saturday but was a little less OK mentally. Karen and I snapped at each other a little. Please keep us all in your thoughts and prayers. I know I hardly ever post butt this Topotecan, my current chemo cocktail of choice is kicking my big old flat fanny. I do get on every day and read all of your triumphs and sorrow’s. You are all in my prayers everyday. David C

Andrea, I just sent you a recipe at your lchelp email. Hope it will be usefull. Please let me know you got and if you have any questions. It is pretty simple but you never know. Thanks David C

for everyone who participated, if you want to call it that, in my post yesterday, everything is OK now. well, not really OK, but somewhat settled down. My concerns about Dave still exist. I still don't like having a gun in the house, but it looks like it's going to stay. But at least his mother and I are now on the same page about most issues. Now if we can just get Dave out of his funk and move forward, as she and I have agreed to do. Again, I'm really worried about him, and I'm worried about me. I fight the depression demons every day and all the stress I'm under has been putting me at a disadvantage with that. Maybe one reason I posted was because everyone says they don't see how I do it. Well, the truth is, I don't "do it" very well at all. I'm terrible at it. Yeah, I go to work, yeah, I manage to get Faith fed, dressed and bathed. Yeah, I try to be a wife or a companion to Dave, and I do stay on top of his treatment and medical issues. But I'm barely doing any of it, and most of it pretty poorly. But hopefully things will be OK now. Maybe we'll get our house sold this weekend and the financial stress and the commuting stress will go away. we'll see. Karen

That's too bad. Although everyone has an opinion, no one should judge anyone else on this board, because we're all here for support. SUPPORT!! I'd like you to quit because I want you to get better, but I'm not going to judge your decision, and I sure wish no one else would, either. Blessings, Karen C.

yeah, what kasey said: the beginning of nothing but good things! amen! Karen

all I have to say is: LISTEN TO GINNY. I was doing the same thing, or close to it, a month or two ago. all the what ifs of Dave dying ran through my head. Ginny, actually, pointed out to me that I was grieving in advance. hmmm. I was! so I just stopped. LISTEN TO GINNY. EVERYTHING WILL BE FINE - EVERYTHING!!! Luv ya, girl, Karen

I'm not the patient, but I fully understand where you're coming from on all fronts, Becky. Especially the not starting a support group thing. and the privacy thing, of other patients. I keep thinking that Dave and I should try to start something here, but I just honestly don't have the time. Like you, and for alot of the same reasons. anyway, we were so EXCITED to meet JustAKid when she joined the board last summer - because finally we knew someone in our city with lung cancer! and someone our age! of course she has NSCLC and Dave has SCLC, but, still, they're about the same age and we know her personally! Crazy! and now we care as much, no MORE about Beth and her family than the friends we've known forever. but how can we live and work and move around in the same town with Philip Morris USA and thousands of residents, and not have known anyone else with LC? weird. I feel the same way about the families we traveled to China with. Spend two weeks in close quarters with people doing the exact same, life changing, thrilling, adventure of a lifetime, and you're bonded for life. and there's not a soul amongst the 15 families that I wish I'd never see again. I love them all. anyway, I really get what you're saying. it is so HUGE when you meet someone with the exact same experience. Karen

Dave has sleeping pills. he started off with Ambien, but he said they gave him nightmares, so he got something else and I cannot remember the name. I'll try to find out and post it. I'd try a sleeping pill. I take one or two benadryls at bedtime, in less than an hour I'm dozing. and have you or he ever tried melatonin? Karen

Lenda, this is a support group, and you are a survivor. That's what we're here for. I hope we can help you. we're here to help you. and believe it or not, your very presence will help someone else. so welcome, and share with us all you want. I'd be pretty darn mad at those doctors, too. enough I don't like frivolous law suits (I'm a legal secretary) I think I'd be mad enough to look into suing them. They sound pretty negligence. You hang in there, and I hope things get better for you. I can't even imagine how tough this is. it's hard enough to lose a spouse, but to know it might have been prevented makes the wound sting even more. God Bless, Karen

Well, Connie, I'm so glad you're back on the board, shaking things up a bit in your charming way! (I mean this with affection, absolutely). What I sort of like about the Bushes is their human-ness. "W" used to be a partier, drinker, now he's totally on the wagon, but admits to his past digressions and what he learned from them. Laura sneaks a smoke every now and then. I hope that's the extent of it . . . but it makes her pretty human. Karen

Sandy, you do an AMAZING job of dodging the bullet! this is great! Karen

OK, just a dumb shot in the dark, but tumors have blood vessels feeding them, when the tumors start to die, what happens to the blood veseels? don't you think they'd sort of "break off" from the tumor? maybe that would cause some pain? Karen

Peggy, yipee about your son! Wow, I hope this is the beginning of a clean bill of health for him! Now, about your husband. I don't know if you remember this or even saw it at the time, but about mid-February, when Dave started his new chemo (topotecan) and zometa for his bone mets, he started getting some really bad pain, it would start in the areas where he had bone mets and radiate, like from his hip met, radiating down his legs. He had joint pain. After a while, the onco doc figured it was the zometa, and getting the zometa with the chemo made it all worse. I was worried sick, SURE that the bones mets had spread like wildfire, but when Dave had a bone scan done, they weren't any worse and were perhaps a little bit better. So maybe that's what it is, something related to the zometa and/or chemo. Just a thought. Hang in there kiddo! My hero! Karen

Sharlene, I do think at this point I'd be kicking his butt or something. Could you go with him to these appointments, to make sure he gets there? Was the Welbutrin giving him the stomach problems? Geez, should have kept him on it, I mean, if he'd been on it for a few weeks, it would have started working after a few more. I don't know what else to say. It's hard. I've been very very depressed before. But I never became catonic. I guess my depression takes the form of anger and irritability more than anything so I don't understand this, but everyone is different. Hang in there. I don't know what else to say. Karen

Wow, thanks for bringing such a peaceful perspective to all of us (especially me, I need it right now). you are so right. I will try to remember your words as I go through each day, especially when the going gets tough. God Bless, Karen

Pat, thanks for starting this thread. Betty, you are undoubtedly one of my favorite people in the whole wide world. I really admire you. Little girl hugs and kisses from Faith, and prayers from me. God Bless, Karen

yeah, I'm wondering if it's not lung cancer related at all but allergies and sinus stuff. that mucinex stuff is really good. I would try it, and see if it helps. I'd also make sure he doesn't have any pneumonia related problems. take care, Karen p.s. you CAN'T gross me out!

When Dave was first diagnosed and still in the hospital, two years ago, we had the initial meeting with his WONDERFUL, POSITIVE oncologist right there in the hospital room. He looked Dave right in the eye and said "small cell lung cancer is almost always caused by smoking. if you continue to smoke, no matter what I do for you, you will probably die." that's all it took for Dave to quit. Smoking is a horrible addiction. I think some people are just more "prone" to that addiction than others, too, and for them, quitting is pretty darn hard. I think your friend needs to quit, no doubt, but please go easy on him. Karen

of course, different cancers grows at different rates, too. small cell lung cancer is much more fast growing than (most) NSCLC, for instance. that's why I think it's good to get a biopsy whenever you can, of new metastasis. to make sure you know what it is. I believe melanoma is a realtively fast growing cancer. I think ovarian cancer is. Karen

Peggy, I didn't get on the internet all weekend. We had a wonderful time Friday evening and Saturday afternoon with my visiting aunts and uncles. Then we had an extremely rough day yesterday. very bad. mostly my fault, insofar as getting the bad day starting. anyway, I thought we'd hit rock bottom, but I just read our post and I have this odd mixture of feeling at peace, and also your words of wisdom kicked my bottom side out of my pity party because everything said is so true. Now, I hope the absolute best for your son. that procedures sounds incredibly neat. like a very miniature heart catherization or something! please let us know how he did, and how he's doing. and I know you are doing fine. I wish I could hold up as well as you do. you are an inspiration and a hero. God Bless, Karen

I think everybody here has pretty much summed up my thoughts about your situation. I have SCLC Extensive now and am fighting harder than ever to beat this. I would definitely at least have a good sit down with this Onc. In my opinion an Onc saying he would not scan unless there are symptoms is total bull kuku. SCLC is very fast growing and usually does not get caught early, BECAUSE THERE ARE NO SYMPTOMS (or very little symptoms that could be anything). I have been on 3 different chemo regimes and my cancer has responded very well to all 3. Never say never and get him to another Onc as soon as possible is my final opinion I must say that I have been very lucky with all my Doc.s having a positive attitude. Also, if possible, make sure he has someone at all the appt.s to help interpret what the Onc. is saying. Someone who is not afraid to ask the Onc. questions and act as an advocat. Don't hesitate to ask questions and get up in the Onc.'s face if you do not agree with something. My wife is great at that. The patient has to have a positive attitude and must not ever question if they/we are going to beat this. I can't imagine not having confidence in my Onc. Hope my chemo and pain pill induced rambling has helped a little. Feel free to PM me or my wife at any time. My prayers will be you, your Dad and all your family as you go this. Please come back and let us know how everything is going. David C

pretty funny. I think the CPT-11 is used for colon cancer - my mom has colon cancer, and I think they tried it on her. she's had several different chemos in the last few months because if there is a side effect, it's going to hit her, so they've been trying different ones. but I know she hasn't had topotecan. you know, that carbo and VP-16 really seemed to work well, but on reflection, I think it's the radiation that really killed the SCLC the first time. I'm sure the carbo and VP-16 combo helped, but obviously it didn't kill every last cancer cell, since the darn stuff keep reappearing! Karen

This makes me mad. FIND ANOTHER ONCOLOGIST, AND DO IT QUICK. First of all, with SCLC, he should have had CT scans every three months, especially since they did see a small speck. A small spot is a small spot - it's not nothing. Another thing - ask about the chemo topotecan. My husband Dave is on his THIRD bout of SCLC, and he's on topotecan, and so is Addie from this board (it's her second go 'round) and it seems to be working. This oncologist is not interested in helping your dad fight. SCLC does respond very well to chemo. this can be treated. it can be more than pallative. and being in your '70's is not old! certainly not old enough to write someone off! no way! I just don't think this oncologist has served your father very well at all. Karen