Treebywater

Mom is too weak to be a candidate for the Perifosine trial. Hospice comes tomorrow. I've been thinking of it as 'the H word' because I didn't want to get to it... but we're here now. The help would be good. So... that's where we are.

In thinking of it all, all of those different 'spins' have come to me too. I just needed to hear other people say it. Fay, I was not offended, but I do want to reassure you that I am doing all I can to keep it all about her. I also know that though maybe it's silly of me to feel this way, I DO feel this way, so I'm trying to keep that in check and not let a shred of those thoughts cross my face or even my mind when I'm dealing with my Mom or my aunt--just as it hurt you, but you didn't let it show. It is all about her, and at this point if she told me she wanted to fly a rocket to the moon tomorrow, I'd do my darnedest to make it happen. I guess I have sounded pretty self-centered here lately though, huh? I think part of my frustration is also coming from wanting so badly to do my best for her... and feeling like somehow I'm not getting it right. It's not that I'm hurt by HER... I feel disappointed in myself for not doing better. That's probably too much of a me thing as well, but I want to be doing as much for HER as I can, and the thought that I'm coming up short and not getting that done makes me sick with myself. amie--your post was not incoherent... I totally understood. Thank you. I think right now I am going in and out of good and bad head-spaces in general... Most of the time, I know that Mom is just enjoying her sister, and they're both just trying to give ME a break. But then I get the crazies some of the time and have to process through them. Bless all you dear people for listening through the crazies. I will keep trying to have my head on straight, and take this little break I'm being give with my aunt here... I have a feeling things are going to get a whole lot harder here soon, and I need to be ready for THAT battle. So... from now on I will try to just be thankful that Mom IS enjoying my aunt so much, I'll try to take notes on some of the things she is doing that Mom is enjoying, and I'll be grateful for the breaks I'm able to get right now (to come here and write out my crazies ). Val

I need to process this and maybe get some feedback. You all know that my aunt flew in to see Mom for 10 days... She's wonderful, she's such a great help, I'm so grateful... And at the same time I'm finding myself jealous and hurt. My aunt cared for both of my grandparents before they died. She's got the caretaking role down pretty good. But we had it down pretty well ourselves before she came in. Now... Mom is really preferring her. If she needs something she calls for her. I'm feeling left out and like I must not have been doing a good job of taking care of her after all. I just feel so deflated... I'm trying so hard, and working so hard and now she prefers someone else take care of her. Her brother came to visit this weekend as well and when she found out his work contract was up at the end of the month she invited HIM to come help up here... I just feel like I must not be doing it right for her... And if I wasn't doing it right, why couldn't she have told me, "Maybe you could do this differently," instead of not saying anything until her sister comes who can apparently do it better. I guess I'm just insecure... but this is an awful feeling on top of seeing how very bad things are for her right now. I'm afraid we're getting near the point that we'll need hospice. Anyway... You guys always help me get a better perspective... Help?

I'm so sorry, Pam... We hurt with you.

You guys are so fabulous.... I'm in a semblance of normal headspace again... All of your words helped so very much. Thank you!

1) Mom is already out of bed and going today 2) We get to find out how big Carolyn is today at a doctor's appt. 3) Carolyn woke up all bright-eyed and bushy tailed (WAYYYY TOOO EARLY! ) 4) I got an email from an old friend from high school 5) You guys always help me to keep keeping on.

I loved seeing your avatar again... It meant we got to hear from you!!! (((((hugs)))) to you.

((((Peggy))))

Oh Jana, I hate to read this. I'm so sorry things are so bad right now. I'm praying for your Mama and for you guys. I struggle so much for words here. I hurt for you and am praying.

Melanie, I hope you won't mind if I do one today! 1) Carolyn is four months old today! 2) Mom is getting around better than she has been 3) I DID put my aunt to work and she watched Carolyn while I got a NICE long shower. 4) Carolyn rolled from her front to her back today for the first time 5) One of my favorite songs from when I was little, "Tennessee Flat Top Box" was on and I got to listen to it.

Well... I really messed up today. It just all built, and I thought things were better after I talked to DH on the phone (he is in port for a few days), and then I was asking mom what she WOULD eat... and she wouldn't give me any answers except to elaborate that she was so tired of all the same types of foods.... and I just burst into tears and started yelling (not at Mom) about how I couldn't get anything right... and how all I wanted was a shower (finally got one just now), and how I don't know WHAT to cook because I don't know HOW to cook that many things and how I was trying so hard to always have a veggie and a bread and a main dish and that's why there were so many rolls, and on and on and on... And while it wasn't at Mom, it was 'near' Mom... And I know she will feel so badly about that now, and she really won't tell me when she doesn't like something.... I couldn't stop crying... And there's nowhere to go. I need to 'take a powder' now, but I can't. My aunt will be here any minute. Thank God Mom's friend is bringing something over tonight for dinner so I'm off the hook there. I feel so bad. I KNOW I need to not take things out on her and I really wasn't TRYING to... It just all came out at the wrong moment and with the wrong person... I just feel awful. Now Carolyn is fussing... Who wants to babysit? *Sigh* Ugh...

*sigh* I'm usually so up and functional (though it mightn't seem like it... because when I feel whiny I whine here), but today I've hit a very large speed bump or something... And it's NOT a good day for it. My Mom's sister is coming in for ten days today. She'll be staying here. I'm trying to get the house in order and figure out meal plans. Carolyn and I just got back from Kansas last night which amounted to essentially 4 days of 5-7 hours of driving (2 of those were with my Brother in Law and his wife), and a day and a half of socializing with my husband's family. I'm worn out from that and trying so hard to catch up. My aunt will be here for ten days, Mom's brother and his wife will also be here this weekend, and at the end of July my Mom's other 3 brothers are headed here... I am SO GLAD for Mom that they are coming, but it's stressful to have to play hostess on top of everything else. I'm so scared about Mom right now. She just seems to get worse and worse and never better. I'm still looking around for those 'good days' for Mom Maybe I am just missing them because they look so different now. And we ARE taking as much joy in the days we're given regardless of their hardness, but Mom is in so much pain and having so much nausea and each day she is weaker than she was the day before. She can barely make it to the bathroom right now, and certaily COULDN'T make it without help. We NEED this new drug to work. (The doc is working on the pain thing... We just haven't found the ticket yet). She had to have a blood transfusion yesterday because her counts were again really low. That took all night and Carolyn and I were there late into the evening. I found out that Mom isn't liking or able to eat a lot of the food I've been preparing, so I have to switch gears there (I have to admit I don't like cooking much, and I especially don't like cooking dishes I don't like, so I'm having trouble adjusting). That makes me feel just awful. She needs to eat, and I'm fixing stuff she isn't liking. I think I have a pretty good list of other ideas to work from. Just have to get the recipes together (can't wait to get the LCSC cookbook!). But for a second there I just felt crushed. It was an irrational reaction, I know... But that's an example of what I'm like today. We haven't gotten word about whether or not the ok has been given for her to start the Perifosine... We thought we'd get that yesterday... Nothing. Nothing today either. I just feel so sad today, and angry at the situation and stifled by everything happening all at once with me not being in a decent headspace. And I'm scared too. Mom is planning her funeral. Down to telling us specifics, and planning to talk to folks about doing certain things. I tell her, just because we're making these plans doesn't mean you need to be using them anytime soon, but... I'm afraid we will be using them sooner than I want. I know it is good to get it done, and important for her to feel settled about it, but it is very hard. And on top of that, I just miss my husband so much it's hard to breathe. What I wouldn't give for just a few seconds of one of his hugs... So anyway... I'm sorry to vent and be downy again here today, and I do assure you all most days I am very functional and keep the junk in my head to a minimum, but I think I'm just tired and it's all starting to catch up with me a bit. Thank you for letting me vent. Val

(((Karen))) You're doing a great job of putting one foot in front of the other. Keep it up. You'll get through this mountain of stuff. Know that you are thought of often. Val

Kathi, I'm so sorry he's gone. My heart feels so very heavy for you. I know he knew how very much you loved him... (((((Kathi)))))

Melanie, What a precious bond you to will have, and what a beautiful quilt. I'm so sorry to hear this news about your Gramma, and I will be praying for you both.

I say "Bleh!" to bad news (It's from one of Carolyn's toys... you so should here it. It would make you smile). I wish the news had been better, but I'm praying that the Tarceva is going to do some major, major work. The next scans are going to look better!!! (((((Brian and Pat)))))

((((inCA)))) Praying for you! Do look into being able to get a 2nd opinion with Cobra. Mom has a Cobra, and is able to do that. Sounds like Fay has some good info there too.

Praying!!!

I don't think you've done a thing wrong. I'm so sorry to hear that your sister had been diagnosed. The words Stage IV are so scary to hear, but there is still A LOT of hope. And don't be too panicked about those scans... I'm working with limited informaton here, but what I hear most people experiencing (and what Mom is experiencing) is that they monitor what happens wiht the chemos and if things aren't working, then they try a new tactic. If that isn't what your sister's doctor wants to do, encourage her to get a second opinion. The first days are so hard... Just being so scared and not knowing how to get information. Keep coming back here. Read, read, read... You'll start to get a feel for how things work, and if your experience is anything like mine, you'll also start to understand that there is SO MUCH HOPE for your sister and other's with LC. I can't answer your question about the brain MRI. I'm sure someone else can, and for sure if you post it in the "Ask the Experts" forum, you'll get a learned answer. ((((hugs)))) We're here for you!

Darn it on the progression! Darn it, Darn it! I hope Alimta is kind to you and KICKS some cancer butt.

Hey guys! I just wanted you to know I'm still holding you guys in prayer!!! Hang in there!

1) I've been married to the most wonderful man for 2 years as of today. 2) That most wonderful man arranged for flowers to be sent before he left, and sent me the most beautiful email. 3) Mom has oodles of family coming to visit 4) Carolyn looked darling in a little watermelon outfit today. 5) There might be storms tonight!

I'm so sorry for this news. Will be praying for you tomorrow and on. ((((hugs)))) Rotten, rotten stuff!!!!

You are SO entitled to a sort of 'down' post. I'm sorry your Mama is having these complications. Prayers continue!

Bless you Melanie. 1) We got rain we DESPERATELY needed. 2) Carolyn is ticklish now, and if I kiss her in JUST the right spot she gives this most delightful giggle. 3) I got to read through the cards Mom has gotten. Such wonderful people in our lives. 4) The hope and strength to keep keeping on we all get from one another 5) My husband isn't seasick