EastCoastLadi

Thank you again for the thoughts and prayers.... As far as how Carlton is doing, much better! ...he's talking more, not the potty mouth, but he is still agitated, I think it's mainly from the steroids and the fact that Carlton absolutely hates hospitals! Also they moved him upstairs to a private room, alot less chaotic, I know that with alot of stimuli, it definitely upsets him. He had a cathadar(sp), awful!...but its' out, no restricted diet and he was able to walk better with the help of only one person! But, and I hate buts, comes the other side, first he wants to come home, but not yet, so he takes all of his anger and frustrations on me! ( you always hurt the one you love!). I also met w/ his oncologist yesterday, and not such good news, he looked at the initial reports of his MRI he had yesterday and it looks like the brain tumors have grown, thus causing all the trouble. we ( onc. and I ) had a long, private talk yesterday, he's concerned about the girls and I, we wants Carlton to go to rehab for about a week, to let him recover more and give me a chance to rest and put things together. In the right now, chemo isn't going to happen, because it appears that the etoposide didn't help this time around. He discussed whether or not, the decision of quality of life versus quantity of life, like a prolonging of life w/ chemo, but causing his quality to be low.... I hate this, drs, social workers, visiting nurses, hospice, rehab..... No matter how hard I thought I was prepared, this has so thrown me for a loop. ..but as Carltons' abilities are coming back, it really is up to him in those moments of clarity and competence. ..one day at a time.... I am so overwhelmed by all of you with your support and prayers, I can't articulate with the right words how I need you all so much and you are here for me....it's a great comfort. luv Grace

Donnalee, I am so very sad, I hate the pain, I don't have the right words to tell you except, I am so very sorry, please know we are here for you. Grace

Once again, thank you for all the prayers and thoughts! Today Carlton is speaking, but it is very fragmented and disoriented...he was having as I put it "potty mouth" this morning.....but every once and a while he would say "I love you very much" - he would always say that to me....but in the next moment I would ask him if he knew who I was ....he would just stare...or shake his head "no". I'm off to see him in a while w/ the girls...the hospital social worker called me...i'm sure many of you can relate...if he comes home...what kind of set up...we can get help in......all that.....also a team w/ the visiting nurses and hospice called a "bridge" - hospice nurses doing regular care... ....please pray... Grace

Thank you all so much for your prayers and kind words! He is doing a little bit better today, I'm at home for a few and now back to hospital. Still waiting for the Neurologist ......hate waiting....the girls are taking it hard, they want to see their dad, but I can't let them.... i will keep you all posted... Grace

..he was admitted a couple of hours ago, he was fine this morning, we went to his onc. we talked about my husband having some weakness on his left side, he ordered an MRI and told him to up his steroids. ..after we went out to eat, came home, he was doing odds and ends, I watched my soap, was tired, fell asleep, he was sitting on the other sofa, later the phone rang, it was for him, I look over, he was sitting up, eyes wide open, expressionless, not able to talk or move. At first I thought he was joking, but it wasn't a joke. I called 911, then my mom, then the cancer ctr.. all the emts, fire dept, police dept. in my house, for the life of me, I couldn't remember all his meds. he wasn't responding to any of them, they took him by ambulance to the hospital..... ..I was a few minutes behind.. at the er, he was still unresponsive, eyes wide open, looking around, they gave him some iv steroids and some ativan. I told them to talk to his onc. he went for chest xray and a ct scan of brain. As you may or may not know my husband has brain mets... ...the nurse told me he had a seizure right as he was in the er..but still didn't know. His onc. finally came and looked at my husband, he checked him out and told me, he was resisting him, which was a good sign, meaning some response, dr. told me he thinks he was having seizures, didn't rule out a stroke, but thought not so....we talked about a DNR ...he filled one out....but I held off on for tonite, let him get thru...... ...he was admitted, but all the wait for a bed, the er was packed, was it a full moon?....my sister came up, he didn't respond to her either....I told her to go home....I'll be ok ( not)...but later on, he sat up in his bed, moaning...mumbling...I called the nurse, she called the ER dr. ....this was encouraging...but he still wasn't responding to me....I told him it was alright....but then we fell back to sleep...all the meds....then later he mumbled..."got to get up".....told him no....just rest...finally after mmmm 6 hrs...a bed upstairs.... got him settled.....he woke up....mumbled again....I asked him if he knew he was in the hospital...he shook his head yes, but still couldn't squeeze my hand...or speak....told him i love him and had to go home to the girls... my girls were so upset, I told them, daddy had a seizure and was staying in the hospital...he was sleeping.... i'm just rambling....but that look on my husbands' face, when I first saw him...I will never forget...I don't know if this is a turn for the worse....I'm not ready, no matter how much I think I am...not yet....I know its' not his time yet, but I don't know how will he be in the morning....its' so hard to sleep tonite..... please just pray for Carlton.... Grace

Nancy... I hope your out burning some rubber!!! Grace

...the platium based chemos are well known for causing neuropathy...but of course your other med could be contributing as well Grace

(((Frank))) I don't think I can put in words as eloquently as you have. Please know I am one of your many, many admirers. My prayers go out to you. You are one tough cookie!! and I hope you will be giving us your peaks and valleys for a long time!!!! Bless you... with much love.. Grace

Thank you for the info Randy... I just told my husband that I was going to discuss this w/ his onc. this week. He has been getting weekly procrit shots, but he has gotten arenesp before. It makes you wonder if sometimes the treatment for this awful disease can be as devistating as the disease itself.. Grace

Please know my prayers go out to Pam and her husband. Please let her know she can come here whenever she wants to, as you know she will get so much support and imformation from those of us, survivors, caregivers and family and friends who have been thru this. Grace

Amen... Grace

I am sorry to hear about your dad, I know you are scared, understandly so, but people do and have responded well with brain mets to chemo and or radiation. Also if you see my husbands' history, he has had reoccuring brain mets, the first time they went away w/ whole brain radiation, only to come back a couple of months later, now he has been only on 1 oral chemo drug regimen ( etoposide) and so far has had very good response to it. Please know you are among many who have traveled down this tiring road, and we are here for you and your dad and family. Grace

Could this be true!!! http://www.flashfunpages.com/couple.swf

I'm sure there are a few of you that already know about this, but I just came across this.... Grace http://www.cancerpage.com/news/article.asp?id=10464

...that is too funny!!!!!

Loretta, I too, like Debbie, have been a spouse dealing w/ my husbands' ex sclc for about 1 1/2 yrs. I will tell you that when my husband has his IMRT ( radiation)..it effected his ears, especially he had a tremendous buildup of wax, so he brought one of those ear wax cleaning kits at the rx store. It helped him a little. But also know that radiation does have its' accumulative effects, and don't be at all suprised if your husband has his bouts of extreme fatigue, its par for the course. I hate the fact that I am coming across more people who are dealing with this awful disease. Please know Loretta, we're here for you. Like Debbie said, read our signatures to find out about our journeys... Just know, you're not alone.... Grace

Teri (and Bill!), We ( meaning my husband and I ) have been this road and sometimes I feel like with this type of sclc if after 1 year you're considered an "old-timer"... What I can tell you is that we had discussed PCI in the very beginning before my husbands' cancer went to his brain, so he went straight into WBR, and of course short term memory loss, extreme fatigue. Did it help, yes, but unfortunately the mets came back, so round 2 was low dosage IMRT radiation, to the brain and chest. Results, very small change, when he stopped, boy did the mets come back fast!!! As for anything experimental, I hate to say, like we all know SCLC isn't as heavily researched as other types of LC. Even I had a very respected Thoracic Onc. in Boston, tell me he was ashamed to admit the lack of research and trials for sclc. But still having said that, there was still some trials and onc. trying different things. I can tell you know that my husband has only been doing oral etoposide, 50 mg 2x daily, 10 days on and usually 10 days off ( but this time we are waiting for his blood cts to go up). This treatment seems to be working very well w/ my husband... 90 percent shrinkage in tumors in lung and adrenal gland...also 50 -60% shrinkage in size and numbers of mets in brain. So the philosophy is keep on going w/ a good thing.... I wish I had more answers, I look at my husbands' onc., he knows I like to pick his brain about this... Grace

Hello Wendy, Once again, welcome to "the gang" ...you will find some of the nicest, most knowledgable people around...and we "get it"! so don't be a stranger and don't be afraid to ask ?'s, give opinions, experiences!!!! Grace

Moonstar, I am so very sorry, please know we are here for you. My deepest condolences to you and your family Grace

Yesterday, I received a call from a friend, whom I had met while my husband was going thru radiation. Her mom Marion was going thru WBR and also had lung cancer. Her, her husband Bud and her daughter Kelly and my husband CC and I became friends. Kelly called me to tell me her mom Marion passed away on Dec 23rd, she told me her and her entire family were there when her mom passed. She told me her mom had a difficult time in her final moments. We spoke for quite some time, Kelly is having a difficult time right now and really could use many prayers. This awful disease robs us of so many wonderful people.....please pray for Kelly and her family Grace

Hey SC, I know exactly how you are feeling, my husband has ex sclc and he has has re-occuring brain mets all over and his dr. is amazed that he is still here as well! So there are stories of hope, my husband is still having dizzy spells and has experienced some weakness on his left side, but even w/ that he's still strong as an ox and gets around pretty good. I guess for us and many here it's this ongoing rollercoaster, up and down. Tell your dad, I said he's a trooper like my husband, even my husbands' onc. can't tell my husband why, he's still here, and btw, he has been responding to just 1 chemo drug, etoposide - orally, it at this point it is helping! so I hope you tell your dad this too. Please keep in touch... Grace

(((Tina))) I want you to know that I am praying that your mom will alright and I know that with you, she will be well taken care of. Grace

May your dad rest in peace, my prayers go out to you and your family Grace

I am very sorry, please know your mom is at peace and that cancer can no longer hurt her. I am praying for you and your family. Grace

I totally understand how it does suck! Chemo depletes ones systems so much, it's a constant balancing act between, keeping up w/any chemo treatment and not wiping out someone totally. I know w/ my husbands' treatment there were weeks that he had to wait because of his terrible blood counts. With the platelets there was nothing the dr. could give, he told us the "artifical" platelets were not good, so it was just a matter of time. I would tell your MIL to try to eat as healthy as she can, especially foods like beef liver and greens, they are full of vitamin K and that can naturally help her platelets. You may want to run it by her onc. first, because I don't know the specifics about your MIL. She will be fine, unfortunately it usually is a wait and see kind of thing.... Grace