Tami

Just so everyone knows.. I DIDN'T get it either. I would also like to add that only 1 out of the 10 people I forwarded it to got it!! Tami

sometimes I wonder this myself.. especially when i'm depressed and life seems to really be getting in the way. You mean I went through ALL THAT, FOR THIS?! Sometimes it really doesn't seem worth it. Yes, I have several chemo protocols, radiation, 3 thorocotomys and finally a pneumonectomy.. yes, that was hard and yes, it takes its toll. But.. i have had 4 years of NED. I have watched my kids grow, helped my daughter learn to drive, helped my son get his first job, watched my 2 youngest sons now be able to grow taller than me (which I'm only 5'0" so that's not really a HUGE accomplishment but to them it is) I've experienced 4 more holiday seasons with the time to teach them how to bake cookies, where all my decorations go, I got to be with my father until his passing last November, spend time with my brothers and sister, watch my niece get married on the beach this summer... it is definately worth it.. a 100 times over. the treatment is rough but not everyone goes through everything and sometimes we actually beat this monster. It's really her decision.. she knows how much fight she has and when she has had enough.. so just love and support her... I was told I was inoperable with not long to live 4 yrs ago!! I wanted to fight for every second of life and it has been well worth it. Good luck to both of you. Keep us posted and vent when you need to. Tami

Okay... Many of you will get this. But I'll bet a few of you may not. Here's a one question IQ Test to help you decide how you should spend the rest of your day...... There is a mute who wants to buy a toothbrush. By imitating the action of brushing one's teeth, he successfully expresses himself to the shopkeeper and the purchase is done. Now if there is a blind man who wishes to buy a Hammer, how should he express himself? Think about it first before scrolling down for the answer... > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > He opens his mouth and says. "I would like to buy a hammer" > > If you got this wrong - please turn off your computer and call it a day. > > I've got mine shutting down right now...

Gosh, I hope this doesn't offend anyone but I saw this on my way in this morning.. If you like riding my a$$, at least pull my hair.. apologies if that was out of line.. it just struck me so funny.

Hooray for Kasey!! 2 years is a VERY BIG DEAL!! I am looking forward to April of 2007 when I will officially be at my 5 year mark...!! I don't think anyone can understand except for those of us who have been or still are "there." I agree with you about the board the losses are very hard to take but it's impossible to leave when you have so many friends that remain. you have good friends who I'm sure love and care for you but they live in that wonderful, blissful ignorant world of life without cancer. I miss that world sometimes more than you can ever imagine. Everytime I'm sick, or have an unexplained pain or fever.. and I worry about "it" coming back. When I go to the pharmacy just to pick up my kids antibotics.. I remember buying groceries there because I was too sick to go to the grocery store. The wave of smells hit me and I remember coming in there so full of chemo and barely being able to walk to the back of the store to get my antinausea meds. I long for the days when I could just check "NO" in all the categories on those long health history forms instead of trying to relay an entire novel of health information everytime I see a doctor. A lot of days I just miss taking things for granted and knowing I'll always be there to watch my kids grow. But then I realize that had it not been for cancer I wouldn't tell them I love them as often.. I would tend to appreciate just the big moments in their lives not all the moments in their lives. I wouldn't be able to offer advice to new survivors.. I would be missing out on a lot of life. Those of us that have "walked the walk" know what it means to be a 2 year survivor. Here's to many, many more!!! tami

here's my take for what it's worth.. I was also diagnosed as a stage IV. Also tumor on my left side chemo, surgery, radiation the whole works. Radiation was bad and I had it with chemo for 12 weeks. Mine was an attept at curative so I think that's the reason it was for so long. Your mother's will no doubt be a shorter time as it is mainly for pain relief. the radiation is tough however you are closely monitored. BURNS- I did not have any burns to my skin at all. I was given cream before they started and used it faithfully. That is just something that CAN happen not will happen for sure. HEART-My tumor was actually sorta under my heart. so yes my heart received some of the radiation. Now I do not have heart problems so I can't really speculate on that but my heart is fine, never had a problem with it. However when they did finally remove my tumor my heart sac, my lung and tumor were all kind of concreted together and I ended up losing my heart sac (they made a new one for me out of nylon ) but I never felt a problem with my heart and I never had any heart issues. I still don't. LUNGS- this is a tough one.. the radiation destroyed my lung completely. However, I didn't notice that, I had the issues from the tumor that affected my breathing. The radiation did not make it worse. I would THINK that if she is having pain and SOB now that if the radiation shrinks the tumor and provides pain relief that may make her breathe easier? ESOPHAGUS-yes, I had problems with this. Mine swelled and narrowed and it was sore and hard to swallow. I still have problems swallowing and I have to really chew my food so I don't choke. But again.. I ate soft foods, but still pretty much ate everything I felt like. They gave me the magic mouthwash and it helped. She may not FEEL like eating much... everything tasted like metal to me. But I drank boost, ensure and I did eat stuff. I think your onco gave you the worst case senario in my opinion. Not everyone has all of this or even much of any of this. Especially if you are looking at a short period of time. To put it honestly yes, the treatment sucked... but it wasn't torture. Having said that I was younger than your mother when I had my treatment but I had also been thorough 2 chemo protocols and 3 thorocotomys as well so I was pretty run down when I started. I also worked through most of the treatment as well. This is tough.. my opinion would be to try it. Especially if she wants to try. then see how it goes if it's too much for her let her stop. I will say that no matter how bad the treatment was, how sick to my stomach, how tired, how yucky my throat felt, how difficult is was nothing compared to pain. Pain is just the worst to me.. Just for pain relief it would have been worth it and if it possibly shrinks the tumor and helps her to breathe I would think that would also be a relief to her. Good luck with whichever you decide to do. You will find a wealth of information and experiences here. Please keep us posted on your mothers treatment. tami

I'm so sorry... I know how difficult it is to hang on. You were a wonderful, caring loving daughter. You were lucky to have each other. Take comfort in the memories of your wonderful times together.. she has peace now. Continued prayers for the tough days ahead. (((((hugs))))) Tami

I am so happy for the two of you. Continued prayers for Lucie's healing. God IS SO GOOD! Tami

Where I am in PA it is raining and cold. It has been doing this off and on for days. it's probably about 60.. feels like 50. We haven't seen the sun in forever and it might as well get used to it.. PA never sees the sun. Although I hear we may get one last glimpse friday and saturday. I hate Pennsylvania.....

I hope I'm like that when I retire too... You gotta love those folk!

I'd like one of each too! Those pictures are so sweet.. I used the kitten as my new desktop!!! Thanks, you made my day!

Thanks for all the information.. In a way this is all too funny.. I guess I should have filed when I received my Stage 4 diagnosis and especially after my second surgery to remove my tumor when I was a Stage 4, considered inoperable and given 4-6 months. I guess I'm out of luck that I didn't die. I guess I lived too long to qualify as ever being sick...

Thanks for all the info about staging. It seems to be a difficult process for some of us.. Like I mentioned only a couple attorneys in town even handle the cases and those that do won't talk to me while I'm working. I would have to stop work.. unfortunatly I have no short term disability. so no work = no pay and this could go on for a year?? I should have applied when I was diagnosed the stage 4 but couldn't I had to work. Now things see getting worse. Why is that? I've always had problems with neuropathy but now my left hand is becoming almost completely numb, sort of. Other times the top of it burns and when I wash my hands or put clothes on and something rubs across it.. it's a terrible burning. The area seems to be getting larger. Why is it getting worse. I thought the chemo effects would peak and then the damage was done. I haven't had chemo since about 2002. I had cistoplatin, carboplatin and taxol. I can't seem to type anymore. As I mentioned the lymphedma is worse in my arm and it aches alot. Keeps me up at night. Along with numbness and pain in the back and ribs. I guess what is bothering me is why it is getting worse? I work in an office so I sit at a computer and type. I'm having problems and pain from sitting and now I can't seem to type or hold a pen or pencil. this is all so frustrating. I get bitter because of the way the doctors screwed up my case and gave me the wrong treatment and yet I'm grateful to be NED and don't want to rock the boat. I'm just not sure where to go from here. Thanks for listening to me whine..

Thanks Andrea and Kasey.. wow, you gals on quick on that keyboard. Things with me are difficult at the moment at home. I'm still NED but the effects of all the treaments, surgery and depression are getting to me I think. I'm having some physical issues related to all that and I'm working ALOT trying to cover expenses. Which isn't helping things. the lympedema and neuropathy are worse this summer. Along with the rib pain.. Plus working 2 and 3 jobs doesn't help. The reason I'm asking about staging is because I wanted to check on disability. As I said I was orginally diagnosed as a Stage 4 and I thought that meant automatic acceptance. However, I think they restaged me to a 1 or 2 because they did the surgery and changed their opinion of my tumor type etc. I can't even get an attorney to talk to me about it because I'm still working and I'm not undergoing treatment at this time. But I can't afford to just stop working. I guess I was hoping that this could be my "foot in the door" to get them to do something. There is a big difference between a stage 4 NED and a Stage 1 or 2. it's weird though you don't want to wish yourself sick... Thanks for all your help!!!

I THINK I read somewhere that staging never changes.. once you are given a stage that is what you remain. Is that correct? I was listed as a stage 4 originally and was "inoperable" by my surgeon/oncologist. then I had surgery and have been okay since and in my mind I thought I was considered a stage 4 NED. However, in some recent paperwork I notice that they restaged me to a Stage 1 or 2 with NED. Do they always do that? I thought that staging always remainded the same. Can someone share some wisdom with me!!! Thanks.

I like the lottery idea..!! Kelly.. you can get it one day I'll take it the next. But it has to be one of those big payout ones. If I'm going to do this I'm gonna make it worth it. I've always dreamed of winning the lottery! ever here that old lottery joke?? An old man lived a very frugal life. He worked very hard and prayed every night. Each night he would pray "oh God, I've lived a rightous life please bless me by allowing me to win the lottery." this went on every single night. "I didn't win today God but tomorrow please let me win the lottery". The man lived a long life and eventually died. When at last he was in heaven he asked St Peter if he could speak with God. When he saw God he said "I was a good man on earth. All I ever asked was just to be able to win the lottery. I prayed every night that you would let me win. Why didn't you ever let me win the lottery" and God said.. "why didn't you ever buy a ticket?"

I had them both. Carbo and Taxol the first round and later I had Cisplatin along with my radiation. I agree the Cisplatin was much more difficult to tolerate for me. I was much more tired, the nausea, the neuropathy in the fingers and toes was more pronounced and I just felt crappy... crappier I guess. The "infusionist" told me that it is harder on your body especially your kidneys so I don't think they use it as a first line.. I think they are more likely to use the less harsh drugs like Carbo.

I work for a large university. We are allowed to donate days to people that need them thoughout our own college. There are several colleges (education, health and human development, business etc) with hundreds of employees in each college. In order for a person to be eligible to receive donated time they first must have used all their own sick time, vacation etc. Then it must be a serious illness (as deemed by the colleges Human resourses person) pregnancy etc. doesn't count. If the person qualifies a notice is sent to all employees with information about the employee just basic information about the illness etc. Asking people to donate. An individual may ONLY donate one VACATION DAY per month. The vacation day is taken from your bank of earned days. that's it you are not required to also make up the day. You just have one less vacation day to use. That company sounds very unethical... that's like the company getting 2 days?? Sounds like they are exploting the ill person and taking advantage of their other employees. What a horrible system. If I were the person asking for donated days I would feel doubly guilty...

I normally plan for the big stuff. But I once bought a house on the spur of the moment. My first husband and I were considering moving and had discussed it. I was visiting my father in my hometown (which was about 40 minutes from my current home but in the same school district) and walked by a house that the owner was just putting a FSBO sign in the yard. I asked him if I could see the inside and he showed it to me and I said I'll take it! I gave him $1,000.00 to hold it for me. Then I went and called my husband and said.. you'll never guess what I bought!" We ended up selling our current house fairly quickly and moved in. Neither he nor my kids ever saw the inside till the day we moved. God, I loved that house, I still miss it. Wonder if that's why we ended up getting divorced??

This is tough and I'm at work.. supposed to be actualy working.. geez. so far.. 2. How about Mt. Rushmore.. it's got to be eroding.. 4. strawberry 6. came up with the same as Eppie 7. coma, semicolon, colon, period, question mark, exclamation point, hyphen, quotes 8. cantalope 9. sox, shoes, sandels, skates, stirups?, skis going to keep working on the rest..

Just wanted to send out my prayers for Nancy B as she has her surgery today. I'm hoping that the surgery goes well and that the doctors will remove the lung and with it all traces of that nasty tumor May she awake from surgery knowing that she is free of the tumor and this da*n disease for GOOD!!! Nancy... please post when you are feeling up to it! Tami

A Rhino for me... yuck! They always seemed kinda mean... I'm not mean 27% of people will be a "higher" life form than me! I thought I was a good person.. I think it was that $2.00 question?? Really wasn't sure about that one!

Like the others my heart just breaks for you. I pray that God will hold you close, comfort you and give you peace. You and Keith have been given such a wonderful love for the two of you to share. Now I pray that in addition to that love you will also find strength. May Keith find relief from his pain. I am so sorry..

I was worried that this might get lost in that long post. Please let us know how things go when you contact Cedars-Sinai about the trial that meredith spoke of. I clicked on the link that she included and it does look very promising. I wish you could have found them sooner but at least you have them now!!!! I am praying that this will give both you and Keith some options, some available treatment options and some hope. Keith is willing to fight... they must give him something to fight with. Please let us know how things go. Many prayers for you both. Tami

Fly... no not like superman although that would be cool. I'm thinking a plane or even a hang glider. However I am hoping that someday I'll get my wings!! Tami