Thinking of MomAllTheTime and Dani

good morning Momall, I read your thread with tears in my eyes just not able to understand how so many things could go so wrong. I have to remind myself at times that the doctors are practicing medicine, they are not the know all, be all, that we would like for them to be. It seems that those of us with the very aggressive forms of cancer, need to be monitored much closer than the rest of us in the insurance needs to be approved much quicker and the doctors need to react much faster and something needs to change in our system to get that to start happening.

I am beyond upset at the teacher in your granddaughters class. My best friend has been a teacher for 30 years of grade school kids she would have never, ever asked the kids to do something so thoughtless. It does drive me crazy that the kids are smarter than the adult teacher. Maybe a little chat with the principal is in order.

What I know for sure as I'm sitting here, is that Dani was so lucky to have you as her mother, and your granddaughters are so incredibly lucky to have you as their grandmother you are one of the most caring, thoughtful, selfless women I have ever had the pleasure of knowing.

I know that it is another form of heartbreak to have to have your other daughter's go through this testing, but know that they will feel much better in their minds to have this put to rest. I also, and the first person in my family, on either side, to have breast cancer. My sister who is 6 years younger than me, and my niece, her daughter both were tested and I am grateful for that. I know that it was frightening to go through the testing, but in the end it is a huge worry off of their minds.

As You muddle through this new reality, I am absolutely positive that you will handle it with the grace and thoughtfulness that will help your family to find their new way through this.

Anytime that you need to talk things through, or just be you and explain to people who can totally understand where you're coming from, we are here for you. Know that, always. Most times we don't have answers but we sure do have broad shoulders that you're more than welcome to cry on to rail on to just vent on. We all need that at some point.

Hugs and prayers to you and your family. You are always in my thoughts and prayers every single day.

Love,

Claudia

thinking of you all. Sending love and hugs. ~M~

Where do you guys come from??? There is so much insight in these threads. How come i don't meet such people "on the outside". ?!?!

Z what a touching testament of you are! Spot on that your kids are watching you no matter what. So cute, and great that she vocalizes that fear (even if she didn't put the word fear). IMHO these interactions are good for both of you. It's real life. She will know who you are, your thoughts, your values, what matters. And that's what I hope the little ones took from Dani, and your daughters have from you. I must say I'm glad you had that exchange yes, they and you are always thinking about it. As I said most of the time D did not speak about the unspeakable, but sometimes I had to tell her something, like the doc should be taking out the ascites (this should be read as me screaming NOW, i did not scream then), she hung up then called again after whatever minutes she needed to work on herself, but I did push her to call the idiot, until he got them into a specialist (it was too late). You know what i dreaded the most, when she was NOT fighting me, when she really was just asking questions like the last few weeks when she was feeling this and that, not seeing her in her tiger self, that broke my heart. In my immediate fam, spunk I could deal with, complacency I don't know what it is.

Lynwood thank you. I see that you had ILC. Could you remind me how was that diagnosed, did you have a hint b4. I had an excision not long ago, and it says among other things, proliferative atypical lobular hyperplasia. So gotta be watched, going to see the surgeon again, it's so stupid, just looking at my pretty face how can he tell s/t is going on in the lobular, he should tell me to go to my radiologist. Just trying to get accurate answers.

Claudia what you said is so sweet. Glad they tested negative, it's a thing hanging over my head. The thing is that my Radiologist(who only deals with Breast), and surgeon are not sure the sibs have to test, I think they feel bad for us, so I'm not sure which way I'm gonna go. They go for mamos/US/MRI. Thank you for the open invite.

JFL I'm glad your family tackled it. The thing is that they are always coming up with new mutations, so that's the scary part also. I'll update you when I get more answers. But thank you all for the info.

The whole world sees a problem with what that teacher did, she's the only one that does not realize it. SIL spoke to the principal, she said she's speechless. Not good enough. You know, "you had one job to do"… yeah. By the mercy of God she's done with that principal and the whole mentality in a few weeks, next year it's a different division, so new principal etc…I remembered Dani worked many times with them for various reasons, trying to change the top tier vision but to no avail. Today was uniform trials day for next year, so my daughter and I went to be there with the girls, it was very emotional. They were gr8 but I had to go out, i had to ask them what length their mommy wanted the skirts at… to make things better we went for chocolate ice cream after. Nothing like a bunch of empty calories.

MicMei waving at ya

MicMei thank you for the prayers.

A lot of people i see just cannot handle these deep conversations. It stuns me. i've learned to gage how people look at me when they are talking, im learning if they are just asking how things are or if they really wanna know. I keep a very short leash to whom i feel comfortable in sharing with. Here, i feel the ladies really get it. thank you LisaY it's just real life.

Lynwood sorry you had to go through so much, this whole thing is absurd.

Someone sent me a letter that a school not far from the school the girls are going to, it's from a therapist, she suggested that they don't call it specifically Mother's day projects, but parent day, to be sensitive. A teacher from there sent it to me, and asked my opinion. Usually im not much for this neutral gender thing, i like that men have their thing and ladies their. but right now i'm biased, and it could help alleviate some of the pressure and the feeling of outcast. What say you?

A "nice" relative that became a widow at an early age asked me that she would like to speak with my SIL, they are pretty much the same age, but i just found out that her adorable kids, do not mention their lost father, i told her i really appreciate it but he has so many people he's already talking to. Like no lady, thank you, if your kids are not talking about their father (who was so sweet and a great papa) 10 years later i don't think it's such a good idea for my SIL to be talking to you, we got enough problems...(she doesn't understand why i don't connect him to her, ughhh)

I had to have a excision for sclerosing intraductal papiloma with usual ductal hyperplasia. Then the surgery report came back as atypical lobular hyperplasia, fibrocystic changes proliferative type, so surgeon wanted me to see him in 6 mos. which is already 7mos. now, i have no problem going to him, but from what i understand this thing was occult to begin with, i feel no lumps what good is it to just go to him instead of going to get images? Just checking if a/o had this experience. I left a message for the nurse to call me, the truth is this damn excision still hurts 7 mos in, it was quite large, it's weird. it's not infected, the whole area is sensitive, but let's just say when i go to the market or there is a lot of ppl i protect my breast

MomATT, Please keep posting!! One day this will be an important diary for you of this time, but you are still right in the middle of it, and I bet writing it up every so often really helps you to process everything that happened, and how to move forward with Dani's girls now.

I do like Parent's Day, not only for the families with missing moms and dads, but for the two-dad, two-mom households, and every other variation in our rich lives. Since Mothers Day was a Hallmark made-up holiday anyway, we can improve. If it helps just one kid get by...

Zar you made me laugh! Sorry, i was just thinking if someone else had the Lobular thingy going, as Lynwood mentioned. Thinking of you all the time.

Curi-ious i was thinking along these lines. My mom used to say every day is mother's day. We did stuff for her anyway...

PATTYYYYYY awww how i love to hear from you. How are you sweetie??

Hi lwrite, thanks so much. so yours was metastatic out of the gate?? Wow that's really hard. The thing is that from e/t i read is that it raises the risk of cancer and with fam HX the stakes are higher. I have pretty good Radiologist, and surgeon is the same that took care of Dani. He was devastated when he found out of what happened. Devastated when he had to tell me after the lumpectomy right there that what he sees is no good. Anyway, the truth is they don't tell you that it will hurt 7 months later still. The whole damn thing is painful To be honest i don't know how they would be able to do a mamo now. I'll go for the clinical visit, but he won't feel a/t. How did you find your ILC? On a regular checkup?

MomATT- yep...stage IV de novo. Regular annual test... my gyn said it probably wasn’t a problem...ha!

The girls are tender and sometimes I get shooting pains there, but no surgery planned. The mammogram showed a tiny questionable spot and the biopsy only showed a bit o’something on the right side. They wanted to do a lumpectomy. My 2nd opinion did the MRI and the girls both lit up along with the sternum. It may be different for you! The MRI is the only way they see ILC and somethings it’s just a “thickening” that’s visible IF it’s there. For you it may be nothing!! (I sure hope so!)

I’m stable right now at 31 months out from Dx. It seems to be a slow grower for me.

You’ll feel better once you know. After what you and Dani went through, you know what questions to ask. We are here for you

mom- thanks for checking in.

I am sorry you even have something to watch. You know everyone on these boards is there fir you.

I think Mother’s Day is a Hallmark holiday as well. I am sorry that Dani’s children have to live through all hype so soon after their loss.

You and they are never far from my thoughts.

Southernsurvivor what a story indeed. You went through so much. One could watch and watch and this monster still catches you. Dani always used to say, so she'll have a scan today let's say, but who knows what's gonna be next week. 16 Biopsies? How does a breast even have room for 16 biopsies?

My DD is 28 she had 2 already, suspicious stuff but it was b9. But she is so young, docs keep saying there is no relation to Dani, the sisters started with Mamo at 25, and can you imagine the 2 of them had to have biopsies the first time they went to get screened. And one of them had to have this year, 2 years later another biopsy. That was done on day b4 our lives changed in March. These girls have so much on their plate, i hate they have to deal with this when women their age don't even know mamos exist. And now they are literally busy every day with the little nieces. But we chug along.

One of them is going every 6 months now, the other is yearly for now. I was suppose to have gone, but i spoke to surgeon and he understand it was not something i could have followed up earlier last month, so we'll take it step by step.

Lynwood196 there you go. Could i ask you please how did they find the atypical cells on the left side? I do have a question, from all the reading here and elsewhere, women have mastectomies but a very large number still get metastatic, between you and me, i have no qualms about it, but even for Dani, doc said it would not make a difference. She wanted to, but she was 25, i kinda went along with doc, who knows what was right or not?

Today the children are starting with a therapist, she has a good name, but i am so skeptical. She better not mess with their heads. A pediatrician that knows the family well had said don't rush to therapists, if they have a close family bond, they will be able to waddle this through for now. So SIL waited a few weeks, but he decided to give it a try, hope it's for the best. People say oh why don't you get help in the house so you don't have to travel there every day, but the children are eager to say things about school, whom should they say that to? A stranger? I say to these people, don't worry about me or my DDs we are better off being there then being anxious. My daughters are going to spend the weekend with the kids ad SIL, shopping for summer outfits, talking to them about ladies stuff, things that Mom should be doing and would have loved to. They are preparing them mentally and physically.

Leftfootforward yes, it's a money thing, and that's exactly the worst that it's so soon. I'll whatsapp the gang not to send me messages on that day. Not in the mood.

We keep getting requests to attach Dani's name to organizations (mostly communal) so as to call people's attention, but we all agreed she would not like her name just being used right and left, we will donate, and they will have to make do with that.

Wishing you all a terrific weekend.

Mom, Thinking of you today. Hug your granddaughters for all of us and feel th hugs we are sending you.

Hugs and prayers from, Lynne

I am checking in and I see your warm thoughts. You guys are the ones that are the Heroines. I kinda sent out a shout out on the fam chat not to bother with greeting today, as much as I know that of course this does not define us, i do feel bad that D is not being the celebrated one, and it's quite hard.

My daughters were gonna take the little ones shopping for a much needed summer revamp, in honor of Dani, she loved to shop, but then they realized it's gonna be mother's day sale this and special mother's day that, it will be very emotional to all involved, so they are spending the day with them doing the shopping on the net and eat some donuts. Distraction distraction.

I am very angry with some well meaning people that are pissg me off by telling me i gotta accept it, and move on, and why i am so involved with the kids, they have a father....i started telling them, are you kidding me, we've always been there for them this is not new, and if they really wanna help they should just be there to lend an ear, but im so disappointed, these are people that care for us, but really they wanna take away the pain by making me forget??That's so insane. I don't have words. We keep Dani in mind all day long, she was so intertwined in our lives, her sibs (sisters and bro) can't shake it, different families have different dynamics, some ppl can't possibly understand how close they were. So i'm learning to keep a tight lip, people even those close to you cannot cope with it. Believe me we all know she is not physically with us, but she is IN us, i know you guys will understand. And we her nuclear fam wants it this way. Every single second. I'm thinking in writing something up, and sending it out to some people. I did tell them, what do you think i'll just divorce the little girls now?? They think WE spend too much time with them. My DDs should move on, and not be perturbed by spending too much time with them. They are not leaving these kids anytime soon, i could tell you that. yes, it's very stressful, they are working then run after work to them, they are there today, it's gonna take a long time till they will slowly be there less time. It's a silent promise to Dani. She would turn herself inside out for us. Did they really think that would leave these little kids, not only did they loose their Goddess but they should lose us? HUH?? These were the ppl that I thought would be there. I know they think they are protecting us but actually they make us hurt more, yeah that's what what i'm gonna write.

And you know i'll share this with you, by keeping close to the kids, we are able to reach them when they need us. What do you think? They are 11/and 10 yr old girls, right by the cusp. So yes, of course there is THAT conversation, D had started with the older one, but my girls are continuing with the support on that. (im keeping on the sidelines, i think they got my 2 DD and it's just fine) and the little one just started talking about it with them, so yeah even if they have a lot of good people around them, they are coming to us for that. We didn't even really start talking about MOM. There are so many details of life. Dad is in touch whatsapp my DDs and us, of course we have to make sure he's comfortable with us being there and we work things out with him when and etc...For instance, on the topic above, i told him you know your little girls are growing up, he says it's out of my league i let you ladies take care of that.

I am sad. We are all sad. We are not depressed. I just got a card from an old neighbor, how she remembers D being like an old soul even at a young age, yep. It's just too bad about the pressure you get from "others".

"I should know enough about loss to realize that you never really stop missing someone-you just learn to live around the huge gaping hole of their absence." –Alyson Noel, Evermore

You guys ok?? I don't want to make anyone feel down.