Thinking of MomAllTheTime and Dani

Thinking of you MomATT and wrapping my virtual arms around you.

Popping in as you and the girls and Dani's siblings are all on my mind. Sending oodles of hugs and love.

Thinking of you MomATT and family.  (((HUGS)))

hello dear friend. Thinking of you all, especially Dani’s girls

Louis -  You are such a kind and caring man.  Hope you and your family are fairing well. ((Hugs))

Edited - I forgot to let MomATT that I was thinking of her and her family.  We do miss you.

Stopping by to say hello, hope you and yours are doing OK. Best, MJH

Thank you thank you. I could read and reread all your wonderful words. I printed it out and showed it to my other 2 DD, they appreciate it so. As I have mentioned in a different thread the support that I got here, really kept my sanity, you guys are an amazing bunch of ladies (and guys)

I know that Dani's struggle at the end was mishandled. Her "good" oncologist ignored her symptoms. She did have lots of stuff going on, the bone mets were out of control, she had shortness of breath, there was pleurisy around her lungs, and the liver was in very bad shape. she also had small lesions appearing on her body. Did anyone ever hear of this?? She had gone shopping with her sibs just a week b4,(driven to the store), and they were very disturbed in seeing the pregnant belly, and the yellow of her eyes and her disappearing self. Onco knew that, he saw her, but she kinda had to ask over and over again (after I told her) about draining the ascites. The day the drainage finally happened her BP was extremely low. I'm trying to convince myself and her sibs that she was suffering (she was extremely uncomfortable), in pain (from the liver pushing into her organs, and the bone mets) and she still had that issue with the bleeding hemangiomas in the bladder. To keep from forming clots, she had to keep drinking, but she did not want to drink too much because she kept getting blown up. Finally he did give her Lasix, but it did not work, her legs were like stumps, in a 60 something LBS woman. I do take solace that she passed at home, and i'm thinking if he would have been more aggressive she would have been hooked up in a Hospital. Still, he is not the doc I told paramedics to call in time of need, i gave the family doc's # instead. Her Onco called like early morning to give his condolences but I just listened. I am really angry at him. He knows, he knows i did not give his # for them to call. It's too painful to stir up emotions. I don't want to make SIL feel that he, we did not do enough, so I'm gonna keep it on the low. But someone messed up, and Onco did.

I won't lie to you, the struggle is real. I take turns with my girls to be at D's home when the little ones come home from school. I'm able to do it, one daughter teaches, so she goes right after she finishes teaching, the other one has one day off in the week so she goes then, and one day my SIL mom goes. People from the community are still bringing suppers, they are cooking with Dani's recipes. They insist. (that's one thing i'm not so great with so I gladly nod at this). Dani's younger one talks about mom from time to time, but the older one does not. We are trying to figure out a good balance about that. In my home we the adults, we still think it's surreal. We are finding songs she sang and taped, so beautiful to listen. And like with e/t else, some ppl get it, some ppl don't. I get calls all the time, hey why don't you go out a little, take a walk, go to someone's engagement, no, i'm not in the mood, i'm going to the store to buy milk (and I pat myself in the back), too bad, if i do go outside i am corteous to ppl and I don't look disheveled, but i can't make e/o happy and just partee so they don't have to be sad. Things I am learning.

I still have to think how to tackle different issues. Dani was negative for BRCA 1/2 - I'm trying to understand if we need to take the test. Because she was so young when she was diagnosed it's right away an issue. But i can't get solid answers. I was reading a book called Previvors, these are women that had either BRCA in the family, or have certain markers as being from Jewish Ashkenazi ancestry (which is our situation), and their decisions to deal with it head on. I did try to go on this board to BRCA but so far I did not get any info, which i find it interesting. To top it off, i had to have excision for some benign lesion that has to be taken out, and my girls had biopsies done (it turned out b9), all in all it's ridiculous because Radiologist that specializes only on Breasts, tells us it's just a fluke. They are anyway going for aggressive checkups due to History from sister. If anyone has any info on this subject I would love to hear. In a perfect I'm not crazy about doing this test, because they are still single, and then you have another set of can of worms to deal with.

Love and warm hugs to the most beautiful people

MicMei thank you and I feel the love, trust me.

BAM!!!!!!!! The 10yr old is all upset, they did a mother's day project in school today. Oh my Lordy, no way!! No notification to us in advance, they asked if she wants to do something in her memory, what a bunch of a crap, she just turned 10, she knows to put away in a safe place things that Mom gave her, but do things in her memory give me a break. We are dumbfounded. This is so fresh for her still, what a bunch of wackos. My DD called me from their house to tell me that, i'm too angry, she's gonna see what SIL has to say about it. If at least we could have prepared her...yep.

Dear Momallthetime,

It's so good to hear from you. Thank you so much for sharing your experience and understanding of what went wrong with Dani's treatment. I think getting preventively tested, at the appropriate time, for the BRCA is a good idea,

Thank you also for your kind words. I feel so vulnerable right now, as I see the cumulative side effects of Afinitor wreak what's left of my strength and cognitive capacities. What's worse? It might not be working anyway

I fear, as far as cancer treatments are concerned, that we are all stuck between a stone and a hard place. The choices are between being ravaged by mets or the dehabilitating side effects of the medications we are forced to take, that unfortunately stop working or don't work at all.

What I'm learning, from the sharing that goes on on this board, is that as our bodies become increasingly vulnerable by the mets and years of medical treatments, a small mistake, any mistake, can bring a quick and fatal ending. And as was the case with Dani, oncologist don't always have a good alternative, are slow to react, or lose faith in whatever knowledge they might have.

The long term survivors are simply very lucky people. There's no science...just darts and a dartboard...Hopefully, we will experience some real breakthroughs in cancer treatments soon.

Meanwhile Mom, may you, your family, and your grandchildren continue to find inner peace and blessings in the memories of beautiful Dani.

With love. Miao

Mom, so good to see your “voice” again. I am sure you are so busy trying to find the new normal in your life and with Dani’s family. I imagine there is a huge emptiness. I cannot imagine losing a child. Your sharing of yours and Dani’s experience has helped so many ladies here. We will always honor you and Dani here on BCO.

Sunset

SandiBeach that's so sweet, i hope so, thank you.

Sunset yes I hope it does help people. She had such empathy for people, so that would be great.

JFL awful it is. One would think you write, the issue is they DON'T.

lwrite what bothers me most is they walk amongst us!

We found out today, that a lot of the friends from her class, actually walked over to the teacher and told her that their friend is tearing up, so they don't think THIS is a good idea. Ten yr olds have more of e/t than careless adults. We are all so mad.

And yes Lwrite for me too, is very hard to see these young women have to have this on their heads all the time. But supposedly the check ups are a must when there is a family History of a sister that had this so young. One DD is in her 20's and one just 30. Mind you at the same time, docs tell me Dani's was just a fluke.

And Miao i know for sure that many times there was delay in Dani's tx. When we waited weeks for insurance to approve something, of course mishaps at doc's office...Or waiting for a clinical trial, so no treatment there. Then when you wait for doc to get back to you and it's another week. For some ppl with aggressive tumors, or very advanced stage these are big negatives. Ughh don't get me started on the so called medical field. It's the same everywhere we turn. Right off the bat there is a disconnect between science and reality. Books and real people. Just look at all the mea culpas from doctors, then illness strike, then voila all of a sudden they are talking a different language.

Mom, for what it is worth, I had always heard that about 10% of BC in young women is hereditary and out of that, only a small fraction is due to BRCA. Most of the genetics of cancers passed down through family lines are not understood at all. Better to err on the side of caution with your two young daughters as you seem to be doing although sad that young women have to even think about this kind of thing. The two youngest of my sisters are kind of at a loss of what to do. One was 31 and the other 24 when I was diagnosed. They view me as a fluke as well but do get a bit spooked sometimes for themselves and for one sister, her young daughter some day. One another note, how tone deaf does a teacher need to be that the 10-year olds need to tell the teacher that the project is inappropriate and insensitive? Is this what teachers going through the motions looks like? It is touching that the 10-year olds, operating on instinct and minimal life experience, seem to get it spot on.

Z, your post is well said and I agree with and relate to a lot of it.