sues

Welcome Valarie, Again better late than never. I am so glad you did find this site - when I was first dx'd I had that same doom and gloom prognosis. I'm happy to say that the Hospice that was caring for me asked me to leave.. ( my kids say I'm not dying fast enough ) I was dx'd 5/2005 and happy to say I just celebrated my 57th birthday- thay said I wouldn't make it to 56 !! I'm not cured by any means - but because of these wonderful people on this site I HAVE HOPE. They're always with me . Good and Bad times. So welcome again - have a very MERRY CHRISTMAS, and if I can EVER be of any help just hollar. Love from all my clan, sue

It is so good to know I'm not the only one that breaks into a cold sweat before scans - I want the scan ( because I HAVE TO KNOW WHAT'S GOING ON ) and I hate the scan because it tells me what's going on. I also get my results within hours. I just had my MRI 12/07 not the best or the worst news I've heard since all this started.. and it is so good to know there are others that understand why one day I can cry all day and another I COULD USE THAT FRYING PAY ! My family is all wonderful. I love them all dearely - but this roller coaster we are on is different then theirs.. someone asked me one day if I understood that my family is being affected by all this ... DO YOU THINK ??? I tell them that I can see what it does to them but I can't FEEL how it effects them - the same as they can see how this effects us - but they can't feel this scare either...I really don't want anyone to EVER have to feel this scare.. What a sour post so close to Christmas !!! SORRY !!! I start another round of SRS on the 18th for the findings from my MRI.. The brain tumor is still growing.. I guess the 25 rounds of WBR didn't do the trick.. I'm just ready to give up yet !! I pray for all to have a WONDERFUL CHRISTMAS -PLEASE BE SAFE AND MOST OF ALL ENJOY EACH OTHER. sue

Betty, I don't know about anyone else - but I was sore for quite a while. I've had several rounds of radiation ( to lung - neck - brain ) All have had some degree of soreness. If you have a UTI - your throat may have a yeast infection. Each time I get radiation - I end up w/ a yeast infection of the mouth and throat. Dr said it's not unusual. They perscribe a " swish and swallow " and in a few days it's so much better.. the pain in your chest COULD be the same thing. Doc told me that some of us are just more prone to a yeast infection than others..check with your doc - Good luck sue

I'm not sure where to post this : but I need to get it said - For over a year all of you have been so supportive. When I needed lifted you were always there. I THANK YOU FOR THAT I hope NO ONE EVER NEEDS TO FIND THIS SITE. BUT THEY WILL., and you wonderful people will be here to help them too. You can't imagine how much I have appreciated ALL of you ! I know Missy has been helped so much too. My other kids wait to hear from her ( she's our talker of the family ) I'm not giving up...not yet anyway . Missy stated in her last entry that I said I can't believe dying would be this hard..I can't ..She is such a good kid -she tries so hard to make it easier on me and the family. Always hoping.. I've had so much support from ALL my family - I know that's why I'm still here -between the prayers and encouragement -couldn't have happened without all of you.. THANK YOU AGAIN FOR BEING HERE FOR ME AND MY FAMILY/ MAY GOD WATCH OVER ALL OF YOU/ LOVE YOU ALL SUE

Hi Donna, Again welcome to this wonderful site -sorry you had to find us . I can't give any new advice that you haven't heard already. My Pet scan ( if I remember correctly ) was not that big of a deal - but in a 3 day period I had the Pet, CT, bone scan all done while in the hospital. Then right before they reased me they decided I needed an MRI. I also am VERY claustraphobic, and the piece ( what ever it's called ) that goes over your head was the scariest thing I endured. So I too took Valium. No problems - matter of fact I fell asleep during the test. The next MRI I decided I could do w/o drugs ( WRONG ) When I was finished I told the tec I would never do another w/o drugs. I was also staged IV with mets to the brain. We did what's called SRS to the tumor in the brain ( stereotactic radiosurgery ) Then they stated me on both radiation ( for the lung tumor ) and chemo at the same time...... I NEVER had any nausea or vomiting with any of my chemos - They just dehydrated me - caused low blood counts and TIRED. MY onc decided HE was making me sick !! If you really want the details it's in my bio ...rather than me taking up space to repeat my self. As everyone here has told you -let your onc know your fears - For some- this doctor thing gets LONG - but I figure if I'm still upright I'm good to go ( Slowly though ) Good luck - you are in our prayers sue

Since Missy beats me to these things usually, I do have to agree with most of what has been said.I've ALWAYS had short hair, so it was no big deal to me . I'm also a hairdresser....so again , no big deal. Your kids are pretty young -but again not all chemos make your hair fall out. I was actually dissapointed when I had taxol/carbo -they told me I WOULD LOOSE my hair. ( I always wanted to know how it felt to have NO hair on your head. Mine did not fall all out. It fell out here and there -and of course there's always the hair all over the place. My hair is normally THICK. so when it started falling out I had the amount that most people have. I couldn't take the hair all over the house - so I had my 6 year old granddaughter shave it off for me. She became part of my journey - mostly so she could understand what was going on with me. The other 2 were 4 and 3. the 4 year old came in and said grandma you have no hair ! She rubbed my bald head and off she went. The 3 year old came in and walked right by me. Still don't know if he didn't notice -or care. When I started my WBR they said I WOULD LOOSE IT FOR SURE. This time I lost it in patches - the funny of the family is which continent does it look like today. So I opted to shave it off again - this time I had the 2 youngest do it for me. They had the time of their lives. Again I didn't want them scared of my bald head . I still have not lost ALL of my hair - bald looks better than it did. It really is comfortable. My husband just shakes his head. I told him years ago I wanted to shave my head and he said I'd have to wear a wig in public. I do not wear a wig anywhere. I wear a hat in the sun but that's it. I didn't want to be bald because of cancer but - we don't have a choice sometimes . I tell everyone I was delt this hand -now I have to play it out -When my first brain met came back I told everyone I got the joker and it isn't even wild. So the hand plays on. You know your children - do what you think will be the least tramatic for you and them. Use your stylist - I'm sure he's had experience with this same situation.Good luck to you. Maybe you won't need either radiation or chemo. We'll keep you in our prayers. sue

What wonderful news! When I was on Tarceva my tumor dissapeared ! My biggest problem was the mets to the brain. So I just finished WBR. I really don't think they left ANY brain cells - some days. In all seriousness I hope it keeps doing it's job. Ther have been many good reports with Tarceva. Congarts again ! sue

I have just recently been involved w/ hospice. I had to do WBR after radiation on the primary tumor in the lung/ and chemo. When the rad onc.thought I needed WBR my oncologist contacted hospice. They were at my door the next day. At least the nurse was. She explained how the system works. (Complicated ) What she was really there for was to see if I really needed hospice. As far as I was concerned I didn't. We sat and VISITED for about an hour. she went through the process for me and my family. Explained that if ANY of us needed anything she would be there in a heartbeat. At this point I don't need cna services -little unsteady on my feet - she got me an electric wheel chair for home use.A few days later my social worker came to visit . I felt as comfortable with her as I did with the nurse. THey explained that they will help me and my family through this journey. I explained that my biggest concern is my husband ( he's in denial ) although he's been with me for every treatment and every dr's appt - he's heard the dx - we've cried together -I've helped him with plans for him when I'm gone - but it's still "when you're better ". I explained this to the nurse and she told me that the first day she met him she had him pegged as one they need to be with. He may surprise everyone and deal well - we've been discussing this whole thing for 13 moths so far. The nurse told me that hospice will pay 95% of persciptions if the script is illness related. Now I'm in IOWA . I assume each state has different rules and regulations - we also have partial persciption coverage through our insurance, She told me it doesn't matter. I keep forgetting to find out how that works. I'll try to remember Thursday. I haven't had a lot of experience with hospice so far - but from what I've seen and heard - they'll be my best bet - for me and the family. By the way the nurse told me that at ANY time we were unhappy with our care or a worker, all we have to do is tell them. GOD BLESS sue

Congratulations on NED - And of course congrats on the grandchild - that was one of the things that kept me going.. I'm on my 2nd round of bald - I kind of like it !! Keep up that attitude and we will beat this beast. We all love news like this - thanks for sharing. Best to you and your family- love sue

I just spoke with Missy about this very topic. You caregivers are to be held in highest esteem. You drop your lives to make us ( the patient ) comfortable. You disrupt your family life for us. That's not fair. We know we need help - don't like to admit it. Our loved ones are the ones that are always there to help. We know without you angels, we couldn't keep up the fight . Missy and my son Mike are the first 2 to come running to help me -not that my other daughter wouldn't. She would too. But my family has always been the glue that holds me together. Missy told me it was Me that held them all together. I told her that's because I was sticky !! I feel for Missy -they're trying to put together a new home - trying to help me. Trying to keep things together. Actually, she's at her best when she's busy -just not this kind of busy. Cindy - she did get to get in the pool on Saturday !!! That's the first thing she asked me today -if I got in today - still a little too tired to take the plunge alone. I finished my 20 rounds of WBR on Friday -now, Mon , Tues and Wed I have pinpoint rad each day - then the wait begins. I wish we could get the answers right away....I just want to know if I have a reason to be bald again. Love to all of you . Thanks for listening to me babble this time. sue

happy birthday katie sorry for being so late - the good wishes are still there ! ! ! ! Many more to come ! ! ! ! ':D' sue

Welcome - as the others have said sorry for having to be here.. The statemnet of taking baby steps - one day at a time is so true - if you read most of the posts you'll find how many of us are so scared - how many are so unsure of where we're going and how we're getting there, But believe we are ALL HERE FOR THE SAME REASONS - TO SUPPORT EACH OTHER. We do that through prayer - encouraging words - and just plain "being there " If you need anything -just let us know -someone will have the answer or a way of finding it. These are the most wonderful people in the world. Use them - gool luck with the boyfriends test results . In my prayers sue

I guess I have to add my 2cents worth in too. I agree with all that's been said a POA is you and moms safest thing to do . When my husband and I went to our attorney about my living will -he suggested a POA. Both for financial and medical reasons. My children all know my wishes -but -only one has to decide they don't like that -then there's the POA -whether it's medical or financial . My husband has the say - END OF IT -no one can over ride his authority -I gave him that authority, because he knows my wishes and I know he will carry them out. He is also my childrens SF. He and my children are best of friends - but when it comes to a loved ones leaving this world -emotions take over. What about Hospice ? My Doc called them for me and they were at my house the next day.... they will be sure I have EVERYTHING I NEED TO BE COMFORTABLE -from hosp bed to camode -to caregiver if I need one. Right now my husband takes complete care of me. He works full time ( nights )and gets me to radiation every day . The kids pitch in and come over to cook us meals each day. At some point my husband will have to give up part of his caregiving. He tells me that we're in this together..I just worry more about him He has high blood preasure to begin with -not enough sleep and trying to keep me comfortable... He's doing a wonderful job . I've always been one of these people that wanted to do for others - so I have a hard time asking anyone to help me -when the kids started doing meals it made me (and him feel better )now I feel like I'm taking the time my kids should be using for their own familys.. Listen to your heart - save yourself and your mom -get the POA You won't regret it -I also am not an attorney - just what mine told me I am also told that the social worker in the hosp can help you set all this up for you. Keep your chin up - best of luck to you and mom -prayers your way love sue

Val , As the person that IS terminally ill you helped me a lot. I felt that these people that don't bother calling seeing me etc for months - I didn't want them to be welcomed - but after reading your post that has changed my mind - there are people that just don't know what to do or say in these situations. I am not close with my sisters and brother -but as soon as they knew I was terminal they come out of the woodwork. We had a reunion in Las Vegas in February. I spoke to my brother ( that I swore I would NEVER speak to again ). When we all got together I decided life was way too short to hold a grudge till death. I'm still not CLOSE to any of them - but we all live in different parts of the country. At least that's the excuse I use . But we had a GREAT time. Thanks to you - even the lady that came up to my husband and wispered to him "how long does she have to live " is also welcome in my home.I do believe people just don't know how to handle someone that ill - they don't know what to say ....I think maybe they think they should be able to give us some kind of hope - not sure - like you said - a hold of a hand - knowing someone is there - a funny joke -we're not looking for them to CURE us - just visit ! Thank you again Val -God bless you and your family sue

Don't know of any advise - you seem to be jumping in w/ both feet ! Hang in there. I have already discussed this with ALL of my family. I DON'T WANT TO DIE AT HOME I want home to be remembered as a fun and happy place - not just a place mom or grandma died ..I have a friend that told me I was being selfish. That my family needs to be able to be with me all they want . I guess she's right to that extent.. I just don't want to put that burden on anyone else. Hospice will send people into your home to help. Let them help you with all this go round ..you sound like your plate is overflowing now. Good luck. God Bless you all. sue