renee

Mom just left in the ambulance. I read your posts and decided that you were right. I woke mom up and told her she was going for a ride. I will let y'all know what happens. thanks.

ohh Laurie, I could feel the pain that you felt by reading your post and it made me gratefull that my mommy is here with me. I think I kind of took for granted that my mom is here, I never thought about what it would be like if she wasn't. Thanks for the reality check, no matter what I go through, I have to remember the good. I have to agree..... what a good daughter you are. They must know how much you love them, I do, and I don't even know you.

Hello all.... Mom has been getting pretty sick the last couple of days, this morning she is still in bed, very unusual, and she is miserable. She is really sick this morning. No fever, but sick none-the-less. Her pain has been horrible and untreatable, I've given her 120mgs of oxycontin yesterday and it didn't knock it out like it used to. She was still in tears until she finally fell asleep lastnight. She can't eat, and says that she can't get up, she says that she "is too sick". I don't know why or how she is sick, just "sick". I may be over reacting, but this just isn't like mom, I plan on calling the doc this morning when the office opens. I just don't trust the "jerk". In y'all's (is that a word?) opinion, do you think I should be so worried or just wait and see if she gets a fever? The highest it got yesterday was 99.5 so I didn't think she needed to see a doc. I'm a little scared today. thanks so much...... I've learned that no question is a silly question on this board.

yes!!!!! Those are by far the best times in a persons life...... and if your mom can do it, go into remission, then maybe my mom can do it too...... yes!!!! I loved hearing about that.... gives me hope!!!! thanks for the post.... just what I needed to hear today, a nice story of spending wonderful quality time and REMISSION. Thanks again, Renee and mom

I spoke to soon... lol... When I took moms new meds to the pharmacy they had some trouble finding a D.E.A number for the doc that wrote the script. Her medical card pays for her pain meds, but this new doc doesn't have a number in the state of ky, he is in WV. So, we have to pay for 84, 40mg oxycontin, no chance in that happening, and 164, 5mg oxycontin IR. I don't have a clue what to do now. Thank heavens for my pharmicist, he is looking for a solution to the problem. In the mean time, mom has no meds. Well, if it's not one thing it's another. Ohh, the doc. mom see's regularly, the jerk, he was so sweet to tell her that "you have lived longer than I expected you to." Why in the world would a doctor just come out and say something like that to someone? Now she is worried that she is walking a wire and could fall off at any time now. Of course I told her not to worry, but it's easier said than done. I tried to tell her that, that was good news. Didn't help, he needs to take the "bedside manners" course again. I reckon that's about all for today...... thanks ya'll.... you are TERRIFIC!!!!

Hey all, Mom and I went to an appointment at a pain clinic today and left so dag-on-happy!!! We have been fighting for pain meds since september and finally this wonderful doctor gave her everything we asked for and more. If anyone is having trouble getting pain meds like we were, I suggest looking into a pain clinic. Now we can worry about more important things and we can sleep at night. For months now mom would wake up in pain and there was nothing that we could do about it.... I have felt so helpless. Just thought I would share... funny how little things are so wonderful now. praying for you all.... Renee

she does take those shots.... the ones that start with an "n".... lol I can't remember the name. They give her those after they start going down. They waited this time until they were 0.2 to give them to her. she goes twice a week for blood work and they see they are going down, but they won't do anything until they are so low she is in the hospital. I don't know why. This whole thing is so frustrating. I'm just tired. I have a hard time coping now. I wish I could go to bed and hide under the covers with a gallon of "fudge brownie ice cream". But I can't.

Just wanted to let y'all know that mom is in the hospital again with pneumonia. Her white blood cell is still down. She says that she is tired and that she feels sicker this time than ever before. I'm keeping my fingers crossed. Good luck to you all. Your in my thoughts and prayers. Renee

Well hello all.... Mom is sick again and her white blood cell count is down to 0.2, that is the worst is has been. Her temp has gone up to 100.1, we were told to go to the hospital when it gets to 100.5. What do you all think? Should we sit and wait.... kind of like a woman in labor, you know the baby's comming, you just have to wait till the pains get closer. The big difference is, this could be life or death. I HATE CANCER!!!!! Sorry, had to vent. We went to have blood work today and I got the great news that I get to give my mom injections. Isn't that fun..... I don't think mom is very happy with that. She needs to be a little nicer to me now.... lol... Sorry all, I'm nervouse and scared again. Mom says that she is scared this time also. I told her that it will be like all the other times, I could hear the doubt in my voice, I know she could. Any words of advice, or just support would be great. And to tell you the truth.... I would like to hear the TRUTH.... even if it's bad. I'm so tired of being in the dark with this. If you have some news that isn't so good, maybe you should send an e-mail. fruityncrzy@msn.com Mom dx September 02, NSCLC now stage 4 three tumors in the lungs and cancer in the lymph nodes between the lungs. 8 weeks of radiation, just had 2nd round of taxatere(sp?) been in the hospital 4 times with pneumonia, one blood transfusion, in isolation once so far.

hello Mary, I know what you are going through... although my mother could never have afforded a four bedroom house, she has lost most of what she did have and like your husband is now on SSI. You are so right about it.... they worked very hard for all they get and more. Mom had finnaly established her own business just 4 short years before the DX, of stage 4 NSCLC. She lives with me know in what used to be my daughters room, a far cry from her cosy little home she used to have. Unlike you, she doesn't have anything from home. I try to get her to bring stuff to make her more comfortable, I think she doesn't want to move her stuff here because it would be like giving up her home completly. Well, my point is, you have the right attitude and should still keep your head held high. Fight the good fight. I TRY not to give up, it's hard, easier said than done tho. Keep us posted and good luck to ya, Renee Mom dx in september 2002 stage 4 NSCLC, finished 8 weeks of radiation, started chemo last month, had second round today, (keeping fingers crossed she doesn't get sick and in the hospital again.)

When I first found this board, it was to find out what happens with Cancer and therapy. Mom was diagnosed in September with tumors in her lungs, it took about 2 MONTHS to find out what stage she was in, and then it was 3b. When I found this place and told the great people on here my story, that's when I realised that people normaly have some kind of therapy done right away, not the case with mom. With some guidance from here, I knew what to start demanding, and how (thanks to Jen) to get on there nerves enough for them to get off there *ss's (pardon the launguage). After 2 months with nothing, I started yelling for radiation or something, so we started radiation and mom got sick with pneumonia, she has been in the hostpital now 4 times with it. For the first month, mom was taking just plain tylenol for pain. Again, thanks to this board, I learned what to ask for and how to do it. I believe it was the second pneumonia that we learned that she is now at stage 4. I truely believe that because of the 2 months with no therapy, the cancer spred. I still can't get a straight answere about the effects of radiation and how far it has spread. I don't know about mets. I assume, like you do, that she has some. I don't have any idea how she is doing. I don't know if anything is helping or not. I am just told that the x-rays, not ct scans, look better. We can't get ct scans done.... I yell at them all the time to do one.... they won't. We have tried to go to another dr. but because we can't get a referal to another one, we can't see one. We want'ed to go to the medical board here at the hospital, but the dr. mom has, hasn't refused to give us one, he claims he hasn't had the TIME to give us one. So we wait. I called for refills on meds for 2 days..... it took 11 hours to get one yesterday. I called at 8 am, and picked up the script at 7:30 lastnight. I got to the pharmacy as they were closing the doors. Thank heavens we live in a small town and the pharmacist knows about mom's condition and he filled it for me. One of the meds is an antibiotic that she needs. Almost didn't get it until Monday. Ok.... I think I've gone on long enough..... aren't you glad you asked... mom is taking a nap now and I need to go to the store to get her some snacks...... good luck to you all......

When mom came home this morning she was complaining that her scalp was hurting her. She asked me to cut it off, she said that maybe the way it was being pulled with the turban, (she started with a turban because her hair was so thin and it's pretty darn cold out up here), that it was causing so much pain and since it was comming out anyway.... So I did, and laughed the whole time. She looks rediculus. I don't think that chopping hair is a strong suit for me. I did that at 8:00 this morning, it's 3:30 now and she still hasn't looked at it.....lol.... My mom has only been to chemo once so far, she is on taxatere so she goes once every three weeks. I can't believe she has already started to lose her hair. She realy didn't seem to worried about her appearence. The only thing she said was that if anything does happen to her, to make sure I covered her head. Thanks for the posts, I read them to mom and they made her smile. She has also said that she would like to post on here to y'all, that you guys have helped so much, she will thank you herself soon. Thanks again. Mom diagnosed 9/02 NSCLC stage 4 8 weeks of radiation, one round of taxater(sp)

Howdy y'all.... hope all is well with you and your loved ones. Mom went to the dr. for bloodwork following chemo and now she is in the hospital again. She needs 2 units of blood. This has been a bad day for her. She has been feeling bad the last few days and then this morning I noticed that her hair is begining to fall out.... I looked at her and she had clumps of hair on her shirt and a small bald spot on her head. That was just terrible. We knew it would happen, but when it does, it's just shocking. Her hair is comming out by the hand-fulls. My brother came by today, for the first time in 3 weeks, so he took her to the doc. About 2 hours later he calls and says to me..... "get up here quick... they are having trouble with mom. GET HERE NOW" So needless to say.... I flew to the hospital, scared to death. They were having trouble getting blood!!!!! That's it!!!! The A-hole scared me to death. I told him not to ever do that to me again. He said he didn't know what to do. So that's our big day.... it's 6:00 and I can't wait to get my kids to bed and relax for a bit.... Thank you all for your kind words, I feel better after hearing that I'm not the only one. I had felt so terrible for feeling that way, like I needed her to be gone for a little while. I thought that I was being selfish. Thanks again all.....

Hello all.... I have just moved so I just got my connection set up. Mom was sick last week and I think I even posted about it. Anyway, I called and called the doc and was told the same old thing. "give her plenty of fluids and if the pain gets worse, give her another percocet" Well turns out moms white cells were down to 1.1, so she was in isolation for 3 days until they could get them back up. She is home now and doing fine. Her last blood work showed something wrong with the " hemoglobin?" (sp?) Nothing happened of course. They didn't do anything about it.... just wait until it gets worse. I feel so guilty..... as most of you know, I am the only one taking care of mom and have been since September. Well, I'm ashamed to admitt that when she went into the hospital and they had her in a room and comfortable, I was so relieved to have her there. Not for any Noble reason, just that I needed a break. I was worried of course, but I hate to say it..... I was glad she was gone for a day or two. That sounds just awful. I am so ashamed of myself for that, I am thankful that she is still with me and I wouldn't want her to live with anyone else, I want to take care of her. I was just so tired. That's no excuse is it? When I think about all of you wonderful people out there that have lost your loved ones and would give anything to have them back I don't feel worthy to be here. I just needed to confess my sins to you all..... don't ask me why, I just do, this disease is so horrible in so many diferent ways. I'm sorry if I have made anyone angry. I'm sure it did, to hear someone say that they wanted there loved one to be away for a little while. I will keep you all in my prayers. I hope you have a nice valentines day.

Wow, I love this place. Y'all make a girl feel better. Nice to hear from ya. I don't have any help at all. None of my family or mom's friends come around her. When mom is sick and in bed, I call her sisters and beg them to just come and visit. I tell them that a half and hour would help her so much. I did get the pastor from our old church to come and pray with us. He brought her a "prayer cloth", that helped a little. I'm not concerned with me so much right now, just that mom needs people around her. Right now it's just her and me. She is on decadron now, what kind of side effects are there from that stuff? After the situation with the neurontin, I'm scared to give her anything. Has anyone been on Taxatere(sp?) for chemo? If so, what were the effects of that? Thanks again y'all, you are all I've got!!!

Laurie, That was truely beatiful and made me cry when I read it.... as you can see at the time I post on here I stay up all night as well..... 4:45.... I got you beat!!! Just wanted to tell you that you are in the same boat we all are... and check out the Nick at Night... that what makes me smile, even through the tears sometimes. Stay strong, Renee

Hello to you all and I hope you or your loved one is doing well. For those of you who follow what happens with mom, I wanted to tell you the latest. The doc told us a couple of weeks ago that without chemo she has about a month or so, with chemo we will have " a few more months". We started chemo last Monday, Taxatere(sp?), she goes once every three weeks. After monday she has been exhasted(i live in ky, we can't spell.... ) she is too tired to shower and I have to make her food for her now. She was doing very well a couple of weeks ago and had gained 2 lbs. yeaaaa. Isn't life funny? I never thought that I would be excited about gaining 2 lbs. Anyway, she is in a lot more pain now. The oxy used to work, not anymore. I don't sleep at night, I want to make sure I give her the percocets as often as she needs them. She is supposed to take them every six hours, I give them when she needs them. She has started coughing more than ever. I don't know what, if anything that means. I'm worried tho. The heartburn is the worst. She always has it, nothing helps and I've tried everything I can think of. I haven't found anything that will give her any kind of relief yet. If anyone can think of something I would really appreciate it. I also worry about it .... does anyone know if I SHOULD be worried. After the Neurontin thing.... I trust y'all more than the docs. Just because you guys are going through all of this crap.... the docs have just read about it. It seems to me that my mom is just a file in a big cabinet with all the other files. Not a person or a mother. k... enough whining.... Thanks again..... hope y'all have a good day.

Thank you so much for asking... I have been so busy with mom that I havent' checked my e-mail for days. In the middle of all of this... I am trying to move. Not a good time for this but I have to... I need an extra room for mom. Anyway, the doc told us a couple of weeks ago that without chemo she will have about a month, with chemo we will have " a few more months". I'm not sure what a few more months mean, but that's what he said. So we went to chemo. last monday. Taxatere(sp?) so she goes once every three weeks. She is soo very tired, and complaining of heartburn. I have tried everything, if anyone has any suggestions on that I would be so greatfull. Nothing has worked so far. She is miserable with it. She is on 40mgs of oxy twice a day and 10 mgs of percocet every six hours but I give it to her when she wants it. The doc just changed her meds about 2 weeks ago, I need to ask for more. I stay up and give her meds to her at 11:00 that used to help, not anymore. The pain is getting worse. when she wakes up in pain she talks about her funeral. I hate that. Our pastor brought her a "prayer cloth", that helped for about a day. She is coughing more than ever and she says that she just doesn't feel good. I have kept an eye on her temp. and that's been fine. I don't know what to do now. I don't what are normal side effects from chemo and what aren't. I don't trust the doc after the neurontin thing we just went through. I'm so scared that she is dying. I know that is a horrible thing to say, but I am. She looks awful. Anyway, thanks again for your concern. Thanks to all for any help at all.

Those of you who have been following my story about my mother know that we thought she had mets in her brain. The ct scan showed all clear!!!!! So I decided to take the advice given to me here on the board about the neurontin and poof, she is getting a little better. She still has a hard time with balance and she still forgets words and such... but she is so much better now. I have the power of attorney now and I told that dang doc that we want to go to Lexington for a second oppinion. We still need to get to a sergeon for the port for chemo.... but all seems to be going well..... She is still at stage 4. We will keep fighting. Never give up. Mommy and Me(lol) are going to wal-mart today and do some shopping. I think we both need a little time away from this cancer. Just spend some quality time together and be happy. Thank you... thank you.... thank you.... I can't say that enough.... you all have help me and mom so much I don't know what I would have done without you all.... Oh one more thing... she is a little more depressed than she was and she has been on Remron. I don't think it's working... any suggestions? Prayers and hope go out to all of you. Renee

OK lets see... mom was diagnosed in September with stage 3b NSCLC, no treatment was done until november so she developed another tumor and she is now at stage 4. I called the doc today and told him that she is out of meds and that I wanted a second opinion about her treatment, and if he would not refer her to another doc. I would go to the medical board at the hospital were he works. I told the S.O.B [ pardon the language] that my mother was dying and if something wasn't done soon I would find myself a good lawyer and he would wish that he HAD done something. It worked.... we had a CT scan done this afternoon on her brain and will find out the results in the morning. Her health was fair before she was diagnosed with cancer. She has had a history of pneumonia so her lungs were'nt very strong to begin with. Other than that she has not had any problems. She is 61 years old. She has started drooling and has lost about 20 lbs. even tho I shove food into her every day, all day. Just a bite or two, but it is something. She is more than a little dizzy... it's more like she has lost all balance or control of her limbs. She will loose a whole day.... she will visit with people go places or talk on the phone and not remember a bit of it. The doc. up until now, has called all of that "normal reaction to pain meds." Now she is on 20mg of oxycontin twice a day when she was on 50mg. Doesn't make sence to me. I don't think I will sleep very well tonight, but I expect there to be a tumor in her brain. I pray there isn't. Thank you guys for your words..... anything anyone posts makes me feel so much better not being alone. I still keep all of you in my prayers and I don't think I could ever express my gratitude for your concern. Renee

Hello Don, I to am a veteran of the message board.... Mom was diagnosed with NSCLC stage 3b in September of 02....We started radiation in November and now she is at stage 4. This disease is a terrible thing and all we can do is try our best to take care of the ones we love. It sounds to me that you have been through a lot your self and now this. I know that at times you figure "enough is enough, why us?" You also sound to be a strong minded person who can get things done. Hang in there Don. The people on this board are amazing. They can help you through just about anything. I'll keep you in my prayers like I do everyone else on here. Renee

This just keeps getting worse and worse. she was diagnosed with stage 3b in September.... no treatments were done for 2 months, in that time she developed a third tumor in the left lung. We called the oncologist today and told him once again about the dizzyness and falling and memory loss, and of course we got the "That's normal" I know its not... for one thing lots of people are walking and driving themselves to treatment. He did finnaly tell us that she is now at stage 4 and she needs to go to a pain clinic. I suppose they just want to keep her comfortable until she dies. I broke down and mom was reasuring me...lol. how ironic. here I am the "care giver" and she is trying to make me feel better. I had to take a shower and compose myself. Please someone tell me of a survivor story with stage 4.... after been given 8 weeks of radiation. Sorry to be so long winded.... just having a bad day. Good luck to all of you and God bless us all. Renee

I am terrified and confused. thank you for your advice deb. It made mom feel a little better also just knowing that someone else has gone through this it gave her a sence of direction. I will do as you suggested asap. Thanks again. To all of you Renee