Thinking of MomAllTheTime and Dani

Momall, what a nightmare. Deep down Dani must know that you and the other people who love her will not go away. We all worry about causing each other pain, but sometimes don’t see how too much protecting can limit intimacy. We need our relationships with each other more than we need to avoid difficult things. But it can be so hard to share. We all do the best we can. Everything I say to you right now sounds trite as I read it, because you are in the fire and I am not, but my love, respect, and good wishes are sincere.

Lulubee, please keep filling up those grandkids with their grandmother’s love. They will be richer for it because you will be with them in spirit forever.

Curi-ous exactly she needs the strength to put herself through it. Yes, those waves are fierce. How are you coming along?

Lulubee you guys really get it. Now I believe that the bond you create or any of the ladies here with the people they love, or care, the ones you could just hang out with, is never enough for the people that wanna hold momentos and love, I think you enrich the other lives. If I give someone a ride in the neighborhood they are so thankful and I feel so selfish because really I was making myself feel good that I did something good, you get it? It's always a thing with me and Dani, is it better to have loved and lost or never known love. What do you guys think? Yep, I always say the first and she always says the second. If she would not have been born Mom would not have to go through this. As you feel she really hates that we have to have "this" in our lives, and of course we understand this, but "it" is here, we are there through the thick and thin. As Shetland said give and give all you want, let them know you and live with you, they will always take that with them.

But the way I see it, if it's in sickness or other losses you don't have that someone, at least you could remember the good times, the smiles and sometimes the sad moments. But you lived life. So this is purely my opinion, but it's so great to be close to those you love. My Mom was one of those unique Human beings that loved every single person, extremely warm, and when she got sick only towards the end of her life at 95, I spent almost all my time with her, even Dani and it's such a tremendous peace for us (her daughters) that we were there when she needed us and shared such intimate times. And I tell Dani, when your little one is not feeling well she practically sleeps on top of you, and you let her it doesn't matter what night she is having.

Don't worry D keeps the UPS guys busy. If she can't go out, shopping on the internet is the next best thing. It doesn't have to be something special, but she got new glasses and she just shared a picture with us. Of course the makeup went on first. But then she herself says oh I"m so skinny and narrow, but we just commented we like the glasses and so it goes.

Shetland I know where your heart is, it's not trite. But yeah, I dance the waltz with her, she goes this way that's the way we go, she moves the other way we move with her. She is the driver.

Babs, didn't want to get you involved in this while the prince is here. I just give her the space when I feel she really needs it.

Mom - just letting you know you and Dani are in my thoughts.  You are two very strong ladies.  Like mother like daughter.  

Yes artist def guilty feelings. We talk about 100000000 times a day, and whatsapp BUT we don't talk about THIS not a moment more than necessary. You know her hubby is a good father but no matter what they will turn to her first, so yes she feels the same way she always the nurturer and she's not giving this up.

Zar oh I know how ferocious you are with yours, for sure love.

Micmei you made me laugh, I was picturing you running around with the bandaids. Thanks.

Cathy I know , thx. you got your coverage already?

Bstein, I'd say it crosses her mind, but im telling you for the real close people, that have lives intertwined with a person that is going through hardship pushing away is not gonna make it bette, it adds anguish.

Doc called last night, he came up with Methotrexate, and folic acid to minimize SE's. She will have to go in for infusion, i'm not sure yet what the schedule is, and she will ask him about the pill form. I wonder why he did not recommend that right away. I sure hope it actually makes a dent. I emailed him a summary of rads tx, he looked it over but after discussing with radiologist they said it's too dangerous for rads again particularly to the T2 area which is much needed. She has compressions in T2 and in C6 so that's crazy, he said she could get paralyzed. I sent back saying I'm not telling her, she is gonna have a fit when she finds out, she was really counting on it, i'm letting him be the bad wolf.

I just read David Rieff: Swimming in a sea of death (Susan Sontag's son), quite a read.

Mom and Dani~Keep asking every question you have, sometimes I feel they have too many patients and really, we need to rely on-them being the Doctor and we are placing precious cargo in their hands. I am hoping this onc will gather the entire team and put it all on be table and come up with something. There has to be something to help her. Every time we start believing something, someone pulls the rug right out from under us. That is why we are forced to take one Day at a time , and everyday we are thinking of you And Dani, for the when turn around time comes when we can all throw up our hands in relief,that she is getting a much needed and deserved break from suffering and pain. Children are always the priority, I could be dragging myself over to the fridge for water, “Hey Mom need help?" “Uh no, pay no attention to me dragging my body on the floor for A Drink I am fine, just keeping watching that good old television" So I slither over to the fridge and grab my water. By then I'll need two, because I just won the gold medal for effort. But I smile anyway dripping in sweat.... ready to pass out from exhaustion. But I don't want them to see me as not able to do things. I understand how she must feel. That angel. Both of you, precious!!!I am sending hugs and love. ~M~

Oh Southern you did go through so much, good for you and thanks for sharing good stuff. Micmei exactly, that's the part i love, mom you ok? , k see ya later, gonna go get some ice cream.

I am concerned, first she tells me that the liver feels hard, what does that mean? Her alkaline phosphate in 500 wasn't so high ever, her Creatinine is 0.35 her CEA in the hundreds ( wasn't so high in ages), what are the chances this methotrexate will do anything? She's only going on Thursday.

Mom and Dani - just here watching your path. Thinking of you and your family.

Thinking of you and Dani today. Praying the MTX brings some way overdue relief. Best. MJH

It's so sweet for you all to keep us in mind. It didn't turn up so well. Dani has high fever. WBC 1.2 and e/t that has to be high is low and e/t that has to be low is high. NO treatment. She was very disappointed. You know when you are looking forward in getting chemo yep, that's how things are now, but it was not to be for her. Doc wanted to send her to get transfusion HGB 7.0 PTS 80 RDW low HCT all of it is messed up, but with the fever they opted better for her to go home and rest. She got Neupogen. And now we wait. All other concerns are in the oven, because now her counts have to get better, and her fever has to come down. He gave her an antibiotic. she didn't even have any tx for 2 weeks, so he retested her twice because they could not even believe it himself. Just another day.

Momall, I am back on the mend and just catching up on the thread. Praying for both you and Dani. I am sending you a PM to tell you how I was able to manage some of the worse pain I have ever experienced. It is definitely a round the clock effort.

Hugs,

Robin

Momall. Hoping those antibiotics work and fast so Dani can get her treatments. I know how hard this must be for all of you. Sending big hugs

Bab

Louis-you are a dear man. Hope things are going OK for you and your family. Best, MJH

Mom, I'm keeping up with what is happening in Dani's world right through your posts. I hope this antibiotics get her fever down and she can get treatment and maybe some blood to help that hemoglobin count. Prayers coming hard and fast for you two.