Remembering Dave

We've been busy - my mom had her third surgery since June last week and it didn't go so well. she's doing OK now, but can't do any pain meds so that was a problem. Long story. Dave had his cisplatin chemo on Monday and is pretty under the weather. AND, we have decided to sell our dream house in the country, waterfront on a navigable river, and move closer to town where we can manage Faith's life easier and be closer to treatments and doctors, work and daycare. Met with a real estate agent yesterday. We have quite a few things in common, the biggest one being HE IS A SIX YEAR LUNG CANCER SURVIVOR. He was a stage 3A, non small cell. Inoperable, but chemo and radiation got it. He considers himself healed through God's love and the miracles of modern science. We will probably use him to sell our house, mostly because he will do the best job and get the most money for our very unique property, but the lung cancer connection helps. He was also adopted as a baby. He also lives on a small nearby river. We haven't been on the board at all, so I don't know what's going on with everyone else, but just wanted to send an update and my prayers. God Bless, Karen C.

Just a quick update. it's been an awful week. My Mom had her hernia surgery Monday and it was worse than the surgeon thought. sounds like he basically had to fix the entire colon surgery incision which is rather large. a one night stay in the hospital turned into three nights. that doesn't sound so bad, but she's had an awful time. she OD'd on demarol AGAIN and went into a total delirium for an entire day. I felt like I was losing my mom. it's all a long long story, but the surgeon and the nurses just didn't listen when we told them how she just can't do narcotics. she had this surgery in a different hospital so they didn't have her records and see that she coded once on demarol. I had the sinus infection from hell so was trying to work, hang at the hospital and make sure my mom was being taken care of, and trying to feel better. I had two complete nights in a row without any sleep at all. they finally switched her from demeral to torodol but she was still delirious. I left that evening thinking she'd be OK, came back the next morning to find her lucid but in extreme pain. I dragged the day nurse who had just come on into her room to see about getting her some pain meds. she flipped open her chart and said she hadn't had any since 9:30 the previous evening - no wonder she was in pain. I said why not? She said, oh, with torodol, the patient has to ASK for the pain meds. What? I said, ask? She was DELIRIOUS. She didn't know where she was, much less know to ASK. I was furious. More than once we had to track down the surgeon to come see her because more than 24 hours - much more - had passed since he did rounds and seen her. The hospital nurses all told me what a good surgeon he was, the best for hernia repair, and I said, well, I don't care how skilled you are, if you cut on your patient and then walk away and forget about them you are worthless in my book. anyway, just a few of many stories of the keystone cops. this hospital used to be the best in Richmond and now frankly it's the pits. no one in my family will ever go there. anyway, she's home now and doing OK except for driving my poor Dad insane and I am trying to catch up at work which feels impossible. Thanks for the prayers for my mom, she now deserves an even bigger break than before! God Bless, Karen c.

Hello all, I guess we have given y'all bits and peices of our last few weeks so I will fill in some of the blanks. I am not so sure that going camping was really a great idea. No, thats not exactly true. I had a great time camping. I went up on Thursday and got a sight in the campground and went to set up. When you have a Travel Trailer you must get it level which really should not be that big of a deal but...........I had to use a stack of FIVE 2X8's under one of the axles to get the TT level!! Thats a lot of leveling and quite a bit of back and forth and wok stacking boards etc. . When I got it level I was really pretty poud of myself ( one of those, Da##, I'm Good, moments). I plugged in the Electicity, tuned on the propane and lit the Hot Water Heater and hooked up the water hose. I was pretty wiped out by then, started getting light headed and was really looking foward to chilling out for a while. I turned the water on and got nothing!! I went down the mountain to the office and told the guy there that I had no water, he said he would send someone. I went back up and after a few minutes a guy showed up on a golf cart who had more rings in his face than I thought was humanly possible, rings everywhere. He tried to get the water going unsuccessfully and then said they would give me a new sight which meant I would have to tear down, hook the trailer back up and then set it all up again and I definitely did not have the energy to do that. I sugested we just split off the next sight over. Ring Man went down to the office and came back with a splitter but we played around with my sites water spigot some more and eventually got it going. Turns out Ring Man lived right across from our sight in a RV with his wife and 3 sons aged 3, 5 and 7. Oh Boy!!! I thought. The only sign of the mom for the first 2 days was her hand sticking out of one of the widows of the RV to flick the ashes from her cigaretts.......OH Boy!! The boys kept wandering over to my sight and actually they were petty well behaved but if I were not so worn out, sipping on a few Samuel Adams and if I did not have such a laid back personality I would have been pretty upset with the intrusions. Karen and Faith came in Fiday night and the boys came over as soon as they got there and just fawned all over Faith. The 3 year old hung out Saturday night and he and Faith played until bedtime, Again, no sign of mom, which actually was pretty nice since he kept Faith occupied which gave Karen a break. Ring Man and his family actually made for good people watching. On the way home was when the trouble started. We had a flat tire on the Trailer. I had to change the tire twice due to the spare was flat. It seemed pumped up when I put it on but when the weight was put on it it was flat sooooooooooooo I had to jack up the traile AGAIN, took it off, went and pumped it up and then put it back on again. Needless to say that wore me plum out, Oh did I mention it was misting? We finally made it home and the I got up the next day and went and had my chemo. I felt so bad from Monday all the way to Thursday afternoon, I mean really really bad and I know it was from the camping trip and the flat tire coupled with the chemo and Monday and chemo the previous week. If I could do it over I would do it in a heart beat though. It was worth every minute of feeling like crap, You have to live every minute to the max, no matter how bad you feel. When I met with My Onc this week he was so impressed that we went camping that he said he was going to increase my dose of Cisplatin for my last 2 rounds of chemo. I said for him to Sock It To Me but am not looking forward to getting more Cisplatin. I had my hearing checked and have had some high fequency hearing loss but I attribute that to playing in bands for 15 years and not from the Cisplatin. My thoughts and prayers are with you all. Keep a positive attitude and thanks for all the encouraging words, good thoughts and prayers, They really do mean a lot. David C

Well, it's probably the thing to do, as explained by Curtis. I just remember when Dave was first diagnosed and had treatment in 2003 - he didn't get any scans until he was done with chemo and radiation (which he had concurrently) and when he had that one final CT scan he showed No Evidence of Disease and that was such a cool thing to see! this time, he just had a CT scan, after completing three of six rounds of chemo, and it showed definite shrinkage. I was disappointed because I wanted to see NED again! Now we have to wait until he's done for NED to come visit again. Soo, don't be like me and have high expectations, just look for SOME shrinkage and celebrate that! Karen C.

Amy, I've been wondering about you and your dad. Thanks so much for the update. It sounds like he recovered well after the surgery. Where in WV is he? I'm from WV. Lived here most of my life but we have tons of family over there and I used to go visit all the time - before cancer, that is. PM me if you want. Just curious . . . or maybe we know some of the same folks. God Bless, Karen C.

Ray, you are one wonderful husband, wonderful guy, caring, loving, faithful dude. I'm betting big money that they just didn't get a very good film on one of the shots they took and want to redo it. If it were something more serious they would have called her and made sure she came in ASAP, not sent a letter. I'm speaking partly from experience as my mother is a breast cancer survivor, my cousin did not survive breast cancer, and I get those darn mammograms every year and pay close attention to what they're doing! Please keep us posted, OK? God Bless, Karen C.

First of all, Fay, happy birthday. Happy Belated Birthday! My Mom, you know, recently had surgery on her liver to remove the colon cancer met there. The recovery from the surgery wasn't so bad because it was done laproscopically, but she had pain afterwards from her liver that she didn't expect. I'm sure I'm telling you stuff you already know since you have chronic problems with your liver. When she had the post op appt. with the surgeon he said that yes, it was pain from the liver - the liver heals quickly and regenerates itself but also can get pain from it. She said it felt like the healing liver would stick to her backbone and he said it probably was. Very strange. but she got over the whole thing within a month I'd say. I'm sorry you have to go through this but I'm glad you're living long enough to make your other non-cancer chronic illnesses demand some serious attention - that is really saying something! I think you will live to see lots of your other goals, like turning 60, 70 or 80 - because you have the spirit and the will to. Thanks for the update, again, I've been wondering what's going on with you. God Bless, Karen C.

Terra - glad she fired the awful doc and got a good one. That is a great first step! And welcome from name similar folks here - my name is Karen and my daughter's name is Faith! So, I'm Karen but closer in age to your mother named Karen but I have a daughter named Faith almost the same age as your daughter named Faith . . . ok, never mind. Just being wacky here. Sorry you have to be here, but glad you've been lurking and decided to stay. We will get you all through this! God Bless, Karen C.

well, on the other hand, I was going to say it sounds like you had a very thorough tech who thought to get something checked closer. In any event, I suspect you are afraid and down because of your father's down feelings. Hang tight. I think things always seem bad at the beginning but somehow seem to come together. Hopefully this is the case here. Please keep us posted and we will continue our prayers! Karen C.

I love NED and I"m glad he's a part of your life! Karen C.

Great, Beth, sounds good - and you know Dave and I are with you! We'll do whatever we can to get it going AND attend. I think we've decided to move "back into town" in the spring - so it will tons easier for us to participate in stuff like that, without the hour long commute to get anywhere. Karen C.

xema, I thought about you and wondered what was going on. I pray that your father will fight off all infection and get his strength back so that he can get chemo and fight the lung cancer. please keep us all posted - we all care so much. God Bless, Karen C.

Wow, Kim, nice post! You are so right. I think your Dad will be OK with you by his side. You never know, he may rather you join him on the trip. But glad you are so understanding if he doesn't. But I'm sure when he's up in those beautiful mountains he will feel your mother's spirit. God Bless, Karen C.

Faith and I DID get up to the mountains with Dave, and had a very nice time! It was overcast the whole time and then Sunday morning we woke up to rain, but we all just snuggled up and listened to the rain. There was a little boy from a nearby campsite Faith's age and he and Faith played and played and played and played Saturday night around our campfire, they were so cute, Dave got some photos of them taking turns sitting in each other's laps (they were playfully fighting over a chair, so the little boy decided if they sat in each other's lap in the chair then they would both have the chair at the same time - good compromise - cute compromise!). On the way home the trailer got a flat tire and poor chemo-scuzzied Dave had to change it, only for the spare to go flat in the parking lot we stopped at, but it was gas station and they had air so he took it off and filled it with air and it held so we got home OK! I'm amazed that Dave was able to camp for four days AND change a tire twice! My parents took a drive to the mountains on Saturday and came by, I was so glad to see my mom feel able to leave her bathroom for that long a time! dAVE is at chemo as I type and on Wed. we see the oncologist and get the results of last week's CT scan. Karen C.

Gina, I was wondering about you the other day. Dave went into remission but it came back, to, of all places, his right forehead sinus cavity and surrounding bone. We played stump the docs and the met got nicknamed "bonkitis" because Dave first noticed it when he was playing with Faith and she head bonked him. He's halfway through chemo and so far it appears to be shrinking. I doubt he is going anywhere yet! Welcome back, fellow travel trailer devotee! We just spent the weekend camping in the Virginia mountains in ours, it was great. check out www.trailerlife.com forums. lots of fun! Karen C.

Cathy, I agree, great to see your smiling face! and I think it's great you're doing all this traveling. I don't care if a person has cancer or not, why wait to do the things you want to do! God Bless, Karen C.

He, Dr. Joe, got your point about the treatment for limited stage - still in the lung - you know, both the oncologist and the radiation oncologist talked about the chemo being highly sensitizing and that's why they were reluctant to do radiation concurrent with the chemo at the beginning, but when the bonikitis bump appeared to be growing instead of shrinking after the first round of chemo they decided to go ahead and do the radiation at the same time. I can see how that would be dangerous with chest radiation. seems to me that alot of folks on this board who have passed away, the younger patients, that is, was from radiation pneumonia or otherwise chronic fluid in the lungs. dave has been fortunate to not have had that problem. his oncologist and radiation oncologist both said they'd never seen lung cancer go to a sinus cavity . . . but both said as well, have always told us this, that cancer can and will go anywhere. Dave has sure proven that. Karen

Dr. Joe, Dave is currently getting cisplatin and cpt-11 WHILE getting 30 days of radiation to this bonkitis tumor (forehead sinus and surrounding bone tumor). Why is that not a good idea unless in a clinical trial? He's not in a clinical trial. His oncologist - who is very highly respected . . . . told us it was in clinical trial, this regimen, but is giving it to Dave outside of the trial. Dave is doing pretty good on it, the cisplatin really kicks his butt, the radiation gave him a little bit of a burn, but the tumor appears to the naked eye to be shrinking and on Monday when he goes in for chemo I suppose we'll get the results of the CT scan he had this week. Karen C.

thanks for the update, and glad to hear about the sense of humor back! God Bless! Karen C.

My Dad's colonosocpy turned out fine, thank goodness, so one less thing to worry about! Mom is doing well except for the Big D whenever she eats. at least stopping chemo for a while will give her tum tum a break. Dave is up in the mountains alone with the dogs and seems to be enjoying himself, although he said it is raining this morning. He said that just gave him a good excuse to lay around in the trailer and read and sleep, and that's not a bad thing for him to do. Ginny - I have two brothers, but they live about two hours from us, which isn't far - but one brother is, shall we say, worthless (especially when it comes to any kind of helping out) and the other brother is married with three kids and a job that requires him to work about 14 hours a day and getting called in the middle of the night all the time. He cares very much about my parents but just doesn't have the time for much help. He did take time off from work to be with my folks when they were both in the hospital at the same time, but he is also very "uptight" and doesn't know much about this medical stuff, also very "analytical" so he would worry and stress and interrogate the doctors about every little tiny thing that was obvious or common sense - so my folks and I agree it's almost better than he's not around very much! I don't mind being there for them - but I'd like for my mom to cop a break. first breast cancer six years ago, now this . . . well, this too shall pass! Karen

I was thinking . . . I'll send you a bunch for a camping section, or how about an outdoor cooking section? then people can submit recipes for grilling, smoking, etc., too? Karen

Heather - awesome article! great photo - your Avator doesn't do you justice! way to go, girl! Karen C.

Cat, I'm glad your ex is coming to get you. He must really care about you. I hope you can be happy and comfortable at your daughter's, are you going to get treatment for these brain mets? am anxious to hear what the doc says, and am hopefully they can be zapped away with gamma knife or something. hang in there, Karen C.

cute story. I can't tell you how much cancer has made me appreciate my own mother so much more. Karen C.

My Mom, if you recall, has been battling colon cancer while Dave battles SCLC. She had her colon tumor surgery, then her liver metastasis surgery, then started chemo and got two treatments under her belt, but went to see her surgeon yesterday because of a weird feeling around her colon incision. She has a hernia from that incision and now has to have surgery to repair that, which also means stopping chemo for a few months. It seems never ending for her! To top it all off, yesterday was my parents' 48th wedding anniversary. My Dad is getting a colonoscopy today so he spent all of yestereday getting "cleaned out" and couldn't go with Mom to see her surgeon. My Dad asked me to go with her, but Mom insisted she could go by herself and everything was fine. Needless to say, she was a little upset over the news, although it is nothing life threatening, and I feel horrible that I didn't go with her. My Dad's colonoscopy is just routine, so he'd better be in good shape - no more sickness in my family for now, please! I'm sure my mom will be fine, just a bump in the road to slow things down a bit. Karen