Thinking of MomAllTheTime and Dani

Dani is going through a rough patch. The bleeding is still present, sometimes more than other times. Today's tx was almost held back because all her #s are wacko. So far her platelets didn't rebound back much, I didn't see the BT yet, prob tomorrow, but e/t is low. She's been pretty much not doing any activities to due lack of energy and pain. A lot of pain in the bones. She could not even drive her DD to the doc because her arms are so weak she did not think she could handle the wheel.

So re: pain meds. I'll get to the bones thread also, but she cannot take the Anti inflammatory because there is concern for thinning the blood and she can't afford that with that condition. Tylenol doesn't do a thing for her. And the other stuff with codeine or stronger, she doesn't want to take, first because she says she has to be aware and make sure she goes to the bathroom in the middle of the night to make sure the little clots come out, and during the day she wants to be able to be available when the kids come home and do stuff in the house. I don't know. I don't know what to say, she has constant pain, they will finally do a MRI of the shoulder and the spine to see what's pressing where. I know for a fact that RO didn't do all she said she was gonna do. But in the meantime, she is pretty much just plopping down on the couch.

He took off the new added tx to the cocktail, no more Leukeran till they see the BT getting better. He wants to see if that made her have less energy. I think so. I called him in the AM and told him how weak she is. I can't imagine how bad she is feeling.

Dani is really angry that she had to cut off part of the tx. We'll see what the BT shows.

You guys are my rock thank you so much for being there.

Lying in bed praying for Dani, Mom, the family and Dani’s treatment team.

Continued prayers for all the BCO ladies and their caregivers.

🙏🙏🙏🙏🙏🙏🙏

Louis

Louis, omg so wonderful to see you here. I have often prayed for you and your family. I am hoping you have some peace and strength when you needed it. Sending warm thoughts to you! ~M~

Keeping Dani and Mom close in thoughts always as well! Always

Mom - I have no words today. Hugs, just hugs. And more hugs.

Mom-it must be beyond heartbreaking to see Dani in such pain. I hate that she suffers so. Visioning her in a soft healing light and sending love and hugs. MJH

Mom, checking in and sending love, hugs, and prayers. A place of pain...no words quite capture all that it does to you physically, mentally, emotionally. I do hope Dani finds comfort and answers soon.

Always thinking of you and Dani Mom. The strength the two of you have is incredible

Yes you all do care. Beyond words can express, thanks everyone, i read your sweet meaningful best wishes.

Dani figured out it takes at least 2 hrs for the pain meds to even make a dent, so she kinda figured a schedule. She lost weight, and she is eating, that's not good. She is involved in the every day life, she's pretty much homebound by choice, just sitting by the fire and taking it easy, but she doesn't want to be seen, she says she looks greenish and she thinks she looks horrible. Well she looks extremely thin, but she is embarrassed even in seeing us - it's crazy but it's the truth. So we are not really "seeing her" it's always on her terms. The problem is that we understand. She did send me a selfie of what she figured out she could do with the wig. It's the first time she did not fix it, but sent it out to the salon, she literally cannot make much use of her arms.

She is trying to push us away a bit, my DD's and I see that, but they still whatsapp all day long. My SIL told me she told him, she was seeing if she withdraws from me, i'll give up. And she told him it just doesn't happen. She can't understand. He told her, what did you think, these ppl that love you so are just gonna go away? Well we get it, so it's not gonna happen. She thinks that if we don't see her or talk to her, she could make things easier for us, we'll get used to not being around her. Well we think more of her if we don't see or hear from her, i told her that. This is now, she changes her mind all the time, so... Who feels like that? It's hard on the very close people, but we always go by what she wants.

Doc still didn't come up with a plan, and re: radiation, they are hesitating because they already radiated those areas, so now what?? They are thinking about it.

A new thing happened, she has a red blotch under her eye, on top of the cheek bone, WTH?? it looks like someone punched her. But what's going on? We don't know as of yet. Did anyone hear of this before? What could be the relation to what's going on with her?

Love and tonz of hugs

You guys bring tear to my eyes. Zar it's exactly what you mentioned. I knew you ladies would understand. She just called the moment she got off the phone with doc, she is getting Diflucan for sores again, and she is in touch with the girls about bags and shoes and nonsense, but no talking about the way she feels. The mirror analogy i totally agree, as much as i try to be cool, it's a game we both play, she knows me well and she knows it's me trying to be strong for her. I never felt a victim being a woman, and i think my hubby and i instilled that in the girls, he likes and only knows through us strong women, my son married a strong woman, by strong i don't mean we don't cry, oh we cry if a squirrel is ran over, but strong i mean we always go to plan B plan C, you just do it. Something like you Z and all the wonderful true friends here.

And yes, as a strong woman this is the worst case scenario. Well, she is under a rock now. And i believe she will soar, she will groom her feathers and off she goes, maybe a bit scathed but just like a phoenix off she goes. Deanna always really nice to hear from you. You literally were one of the first ones to welcome me, and gave me tonz of advice. Thank you.

I jumped with my new story, and i did not call you by your individual names to thank you, Micmei thank you for your warm words. Southernsurvivor,Lynwood1960,Leftfootforward , GracieM2007, JFL, MJH, such beautiful words, Kaayborg crossing fingers for the new tx to work, Lwrite as you so poignant put it - good grief.

I get it, dear Dani, I get it.

The thing I hate most about this whole wretched business is knowing that I am a source of pain and sorrow for the people I love most dearly, when all I ever wanted to be to them is a fount of happiness and comfort and stability. I would go to crazy lengths to distance them from grief and pain over my sickness.

I am driven to stay alive for my two small grandchildren, and I invest my best days into forming deep bonds with them-- all the while wringing my hands over whether it might be better for them if I were not so dear to their small hearts. When I hit particularly bad patches with my health or even just go through a wave of scanxiety, I have this sort of desperate primal response where everything in me wants to fade out of their lives now so they won't be so gut-punched by my decline later.

So yeah, I get it.

But Mom... you hang in there. She really wants you close by, in her heart of hearts. I have a dear, close cousin who I treasure because she has always spoken clarity and truth into my life like nobody else ever could. A while back she implored me to let go of protecting my family so much from any real awareness of my daily challenges and suffering over BC. Her father died from cancer 13 years ago, and she said the only way she and the others in his immediate family could even begin to be reconciled to his death was because they knew how he had suffered, how hard cancer had been for him. I've had to think about that. I'm still working on it. Maybe Dani needs to know that it's easier for you to see it all than to not see and be left wondering. Surely she knows that if it was one of her children, she would be stuck to them like a fierce, sticky velcro mama. Just like you.