Thinking of MomAllTheTime and Dani

I concur with everyone. This MO sounds wonderful.

I know you are so worried about Dani driving to her treatment. Just remember that means she feels strong, she's not giving up the fight. It's not that she doesn't want or need your help but she needs to do something. Enduring chemo isn't enough. Driving makes her feel normal, in control. That's how it is for me.

Please take care of yourself. You know the airlines spiel. Put on your oxygen mask first so you can help others.

Much appreciate your update, MomATT. I, too, worry when I haven't seen anything from for a while. I'm relieved to hear about the current onc.

Sending you love and strength today and always! Deanna

So pleased to hear you’ve found someone who listens, cares and gives themselves to you and Dani instead of giving you all the brush off or nothing at all. This is a positive change, the kind that makes an impact, thanks for updating

Chelle hey, that's so funny yeah she's little and mighty, exactly. Thanks for the shout out, do show up, we miss you. How is your husband doing? How are you? Where are you guys holding?

Jen thanks for the support, how was time off with your little prince?

Kaay I gotta check in how you've been feeling? You are so right about the line, these people forget the responsibility imbued to them. I just read a profile for a doc it said: it's a privilege to treat the patients. That's how they all should look at it.

Illimae appreciate your words, so true, how are you?

Zillsit's exactly as you say. I could see in a lot of things she says or does, we ( the sibs and I) we know, and we get her. Lots of stuff does not make sense, like driving in a blizzard and looking for a spot in NYC!!! but for her that's how it feels. She could control that. (well, thankfully it turned out that day she allowed her hubby to accompany her). It's the little she could actually control in life. Chemo is not enough.

Bluebird yep, it's a blessing. Don't let it fool you, doctors are not the saviors but if you have to deal with them day in day out, it sure makes life easier and lighter. And if we could feel that someone is really thinking of your well being that's beyond important. On an aside, I just went over to a family I know, the father passed away, he was 95yrs.old, his wife is 15 yrs younger, and she took care of him, the daughter in her 60's was falling apart, s/o said, oh you gonna be there for your mom, I said no, I think mom will be there for her. How are you feeling – I gotta hop on the other thread and check in on all of you.

Shetland, yes, I am feeling overwhelmed, but definitely feeling much better. Thanks for your kind words. Was the first time I did not stay up to see the fireworks, I am so scared of being called out of bed, that I try to go to sleep much earlier, so at least I get some sleep.

MJH i got how you were trying to help. Thank you.

Momallthetime - you are one very special lady. Hugs.

Momatt, My heart goes out to you. You are an amazing mom.

Louis!!!!!! How are you doing? I was just thinking of you and the boys. Good to see you pop in.

Mom, You put us all to shame. You not only find time to check in for us, but you address every one of us individually. You are amazing. I have come to the conclusion that you should teach a course to help healthcare workers, doctors in particular, how to treat their patients. Medical schools definitely instruct students on anatomy, diseases, treatments, procedures, etc, but they must just skim the surface when it comes to those people skills, mutual trust, and bedside manner that are such important parts of care, communication, and effective outcomes.

Louis, How wonderful to hear from you. I hope that you and your sons are doing well. I suspect that there were some difficult moments for you during the holidays, but I am sure Karen was there in your heart helping you through.

Hugs and prayers from, Lynne

Oh Louis it's so emotional to have you show up. It sure brings back memories. How special of you. Thank you so much. As you know, the support here stays with us 24/7. It literally changed my life. It must have been so hard this season of celebration, how are you?? How are the young studs? You in laws? Are you in touch?

Lynne i posted this article in the other thread also, just a short version what it's like when the shoe is on the other foot. I read many such a true stories. We should print this and walk around with a copy at the visits.

https://www.nytimes.com/2018/01/04/well/live/resol...

Lindalou, hi, how have you been? And thank you, just a mom and a friend.

BigB she's been terrible disappointed, one of the things is she says how can i get a little dog and never know if ill be available to tend to the puppy. The plan was she was gonna kinda volunteer me for the dogsitting, but having been going for tests, procedures and tx, left and right and not knowing where she'll be became an issue. My DD's and I were in a store we were buying small items, and we saw these cute doggies that move their heads, we were gonna get it for her, but then we decided it will be a reminder of what she can't have now. Hopefully not too far in the future.

Bluebird you kidding, my hat is off to you!

Mom, praying for you and Dani. Please, please, take care of yourself. It is too easy to loose yourself while under so much stress. It is terribly presumptive of me to think that Dani may also be worried about you.

While I cannot physically come to your house and cook, clean, or do the laundry, perhaps I can help you in other ways. Please do not hesitate to let me know.

Many hugs and warm wishes to you and Dani.

Mom, thank you for asking about me. It’s incredible how you can deal with all of the things going on in your life, and still have room for all of that compassion and love for others. Currently I’m doing pretty well. On Afinotor and faslodex, with minimal SEs so far. Just hope it’s working. We’ll find out soon enough.

I wonder, does Dani know about us? And how much time you spend with us? If so, please tell her, even tho we haven’t “met” , that we know her through you, and we love her as we do each other.

Stay strong. You are an amazing mom.

Stefanie

Mom and Dani-still right here in your corner. MJH

Big B what breed is Skittles?

Grannax exactly a lot less turmoil. Interestingly I was just reading some articles about doctors, how things are not what they seem. Anyway in this article they write how the older doc takes it easy, he does not rush with scans, blood tests, he learns about the patient. And as I told you all before, if you would have told me that months ago, I would have told you no way, e/o knows that I love meds, got a headache, get a Tylenol, throat hurts get good meds, but somehow after going through what we went through, we are still traumatized, if it would not be for the private fancy room we paid for, I just don't know in what state we would be and he has a calming, professional and we'll work with you attitude.

Anyway, this doc really sits with her, he talks with her, he's been in the business I could tell you about 40 years. He asks her questions, and he listens. It's like having Dr. Marcus Welby (at 70). enough said. SO somehow I am letting him guide her, us, he's not doing scans (although I'm dying to know what's up), because her bone marrow is acting up, her blood levels are still not up to par, and he does not think that the scans will be accurate at this time yet.

He believes people that are not well, need to rest take things slow, and incredibly that's what I read in this article. It's not for everyone, but at this stage I think that her being in peace, and knowing he really cherish life means a lot. (he told me in the room, I know she is very sick, so he knows what's what, but it does not faze him)

NO-21Nov you made me laugh. Yeah, for awhile, things really did not get done. My sister came to visit, I never win with her, and she just sent over dinners. She didn't ask too many details, but she saw that we were kinda not how shall I say it, functioning. We are on the mend.

Bjsmiller welcome, so nice to hear from you. Thank you.

Stefajoy your treatment sounds really good. Best wishes it should work and fast. No, Dani does not know that I have "my people", she really really does not like to have any attention, my other DDs know, my hubby knows, my SIL knows, because I tell him about my friends, my peeps how much you helped. We feel your love! She knows i try to understand things, she knows i look and looked for docs, she wants me to keep the records but it's not conversation, only when she wants to talk. It's her floor.

Zar gonna check on you soon. We are much better thank you. Re: the dosage, I did not get it. But I do know that he lowered it even more, because her blood counts are low, he was worried about the bone marrow. They don't have a portal. So I gotta ask directly, and it's very hard to get her to the phone to send the info over.

MJH I got you at the corner.

Artist generosity I'd say yes, Dani at the worst of times, shared a snack with a nurse, but grace…but thank you. About the furry cutie thing, she really wants it, and then she's like and you'll take care of "it" when I am at an appointment, I love doggies, don't get me wrong but I was not ready for THAT. She even convinced my hubby, that is not crazy about doggies 😊 that if she has to be away (aka Hospital) we'd take it to our home. AND he just melted, he didn't say a/t. But her energy levels are low, so I am not so sure when this will happen, but a girl could dream right?

Dani had the embolization on Wednesday, exhausted or not Thursday she went for her weekly treatment. The bleeding is much better, but there are still clots, but small. So far we don't have real answers. She's dealing with it the way she deals with e/t. She's got to know her body well, she works hard to keep it at this level, as long as there are no formations of large clots. Crazy crazy stuff.

Big B what breed is Skittles?

Grannax exactly a lot less turmoil. Interestingly I was just reading some articles about doctors, how things are not what they seem. Anyway in this article they write how the older doc takes it easy, ihe does not rush with scans, blood tests, he learns about the patient. And as I told you all before, if you would have told me that months ago, I would have told you no way, e/o knows that I love meds, got a headache, get a Tylenol, throat hurts get good meds, but somehow after going through what we went through, we are still traumatized, if it would not be for the private fancy room we paid for, I just don't know in what state we would be.

Anyway, this doc really sits with her, he talks with her, he's been in the business I could tell you about 40 years. He asks her questions, and he listens. It's like having Dr. Welby. enough said. SOsomehow I am letting him guide her, us, he's not doing scans (although I'm dying to know what's up), because her bone marrow is acting up, her blood levels are still not up to par, and he does not think that the scans will be accurate at this time yet.

He believes people that are not well, need to rest take things slow, and incredibly that's what I read in this article. It's not for everyone, but at this stage I think that her being in peace, and knowing he really cherish life means a lot. (he told me in the room, I know she is very sick, so he knows what's what, but it does not faze him)

NO-21Nov you made me laugh. Yeah, for awhile, things really did not get done. My sister came to visit, I never win with her, and she just sent over dinners. She didn't ask too many details, but she saw that we were kinda not how shall I say it, functioning. We are on the mend.

Bjsmiller welcome, so nice to hear from you. Thank you.

Stefajoy your treatment sounds really good. Best wishes it should work and fast. No, Dani does not know that I have "my people", she really really does not like to have any attention, my other DDs know, my hubby knows, my SIL knows, because I tell him about my friends, my peeps how much you helped. We feel your love!

Zar gonna check on you soon. We are much better thank you. Re: the dosage, I did not get it. But I do know that he lowered it even more, because her blood counts are low, he was worried about the bone marrow. They don't have a portal. So I gotta ask directly, and it's very hard to get her to the phone to send the info over.

MJH I got you at the corner.

Artist generosity I'd say yes, Dani at the worst of times, shared a snack with a nurse, but grace…but thank you. About the furry cutie thing, she really wants it, and then she's like and you'll take care of "it" when I am at an appointment, I love doggies, don't get me wrong but I was not ready for THAT. She even convinced my hubby, that is not crazy about doggies 😊 that if she has to be away (aka Hospital) we'd take it to our home. AND he just melted, he didn't say a/t. But her energy levels are low, so I am not so sure when this will happen, but a girl could dream right?

Dani had the embolization on Wednesday, exhausted or not Thursday she went for her weekly treatment. The bleeding is much better, but there are still clots, but small. So far we don't have real answers. She's dealing with it the way she deals with e/t. She's got to know her body well, she works hard to keep it at this level, as long as there are no formations of large clots. Crazy crazy stuff.

Very good night to all

What a huge turnaround in doctor personalities. I'm glad Dani and you have one that listens and thinks of her whole being. These are a rare breed. Much love to you, Mom, and to Dani.