new and future flat sister, with questions
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Bobo. Today is the PCP. Ask him about the GS. I would have been comfortable going to mine except it was out of her range and she said so. Hopefully your GS would be upfront with you and more compassionate. You did say they had some experience with mxs.
Good luck today.0 -
Good afternoon everyone!
I am having a quiet time, Nephew has started his long journey back to Sydney, and his Mother is sleeping.
I have been very affected by the events of the past couple of days. After seeing the car and hearing the Police were surprised they were able to walk away from this, has given me a bit of a reality check. Colin's Mother is slipping away, not a bad thing, because there is absolutely no quality of life. Her stoic nature and a lifetime of clean living have turned on her, keeping her in this limbo much longer than is fair to any one. It is all very sad, not an emotion I deal with well. It sets me off on a Rheumatoid flare, every time.
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I've read back over all the posts that I haven't been able to respond to. I am so grateful to be part of this little group. What an amazing thing it is to have found each other.
The advice and the support here is something very special.
Sorry if I am sounding like a maudlin drunk! and I don't even drink:)
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M, you make me laugh even in the middle of your challenging time! Saying that you sound drunk. We know you don't drink!
But you must be feeling a little sad. Poor M! If you hadn't slept through the bag, you would still be laughing out loud at our Z. She took over as bad girl for me this week. She went 'old-school,' shooting spitballs at the doctors. Idesim and I peed our pants a little. And everyone was a little bit mad because they all had to sit in the pee-smelling bag.
A girl! We are all over the moon. I was too worried to say how much I wanted a girl. If it had been a boy, I didn't want to hurt his feelings. When will she be ready to come out? All of us cannot wait.
Z, I don't know about second-best. I will have to see. Even though I am being put through the ringer, I'd want to stick with someone with more practice. I have been looking into Moffitt. I might go to Jax, but don't want to go back and forth with minimal yield. Plus my mother lives in Jax. Yuck. She is coming day after tomorrow. She knows nothing about any of this. Have no plans about it, but I wonder how long I can keep it from her. I'm going to go as long as I can because I do not want to deal with her nonsense. Probably I will have to tell her once DLLP can't stand it any longer. She was horrible yesterday, by the way -- she didn't come with me (I didn't want her to), but she was supremely self-centered all morning about petty things, and I called her on it via text, and she texted that I was right, she was sorry, could she come to the hospital? and I texted no, I did not want her there. I have enough to deal with. Everyone just goes on with their own needs, despite what's going on with me, in part because I have been doing such a good job compartmentalizing. Not that I should excuse this kind of behavior.
M, hoping for a full hostess report soon! You sound miserable. Idesim, how are you bouncing back from the Herceptin? Birdie, I think I understood about your mom, I am so sorry.
ND, let's make the new baby some dresses!
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Bobo, your situation is so wrong in so many different ways. You have been jumping through hoops for months. What about those who want a BMX because they might get BC, are they required to do an evaluation with a shrink? They are heralded as brave, pro-active, forward thinking individuals who are doing what's best for their health and family. I see a double standard. I would also tthink that an insurance company would rather pay for one procedure instead of all the ones you have had to endure. None of this is fair to you, your DLLP,or your children. I wish I had the magic words to say to this anal retentive, backward thinking, Northwestern educated wench, to make her see just how wrong she is. I have no breast, no uterus, no ovaries, and I'm killing my estrogen daily, none of which makes me less of a woman
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Gramwe, you are ALL woman! And you make me feel like a lazy good-for-nothing when you give the animals a bath. Bobo needs a bath as we speak.
You are right. But many of those women who have had preventative surgery have been tested for the gene -- I have not been tested. I can't understand why this is being called preventative, anyway. Haven't I had enough surgeries to qualify?
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What it does make me is a fighter. I will do whatever it takes to live!
Yesterday as I sat in that tiny room watching the child my baby is carrying, I was giddy, excited, hopeing for a little girl. When the US tech said those words I smiled. Then it felt like someone punched me in the gut, through my mind went, what have you done, what if you passed on to your precious daughter and her daughter this stupid BC. I left the office and cried on the way home. BC had taken away my joy! And had given me anger. Damn BC and all that comes with it. I know living with fear is silly, and I gave into the fear for that moment, but I will not let it steal another moment of my happiness, I will not let it win.
M, as usual you are right, this is a special group! We laugh, we cry, we bitch, all done safely with others who care and understand. So sorry that you are dealing with so much right now. The car accident had to be frightening for you all. Watching a loved ones health deteriorate is also a heart wrenching event. Know we are all with you!
Snow? Did some one say snow? Wow fall is really turning on its charm early. We had lots of rain yesterday, but today is crisp and beautiful. Tomorrow starts a big move for us. We are moving our bedroom into the sunroom so I can finally paint the bedroom. Before the roof was repaired we had a water leak in there so the ceiling is stained and driving me crazy. I figure while we are at we may as well paint our bathroom too. : )
Going to do the Rites and take a long walk. The city has changed the color of the water in the fountains, and timed them with music, I always enjoy fall in the park. Hugs0 -
What a woman you are gramwe! Well said!
I can't get my head around what is happening to our Bobo.
You sure have had enough surgeries to qualify for a BMX. Is there nothing in that law I found for gB that would suit your circumstances? It was tied in with symmetry, and discrimination. Both issues you are facing...just a thought.
Sorry you have the stress of your Mother again, Bobo. It is so hard to keep this stuff a secret. I don't know how you manage it.
Take care M x
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Yes you have had enough surgeries! It's time they do what you want and need.
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Thank you gramwe, we were posting at the same time.
I feel for you, so much right now. I can only begin to imagine how thrilled you are for your daughter. I am so excited for the new baby too!
I understand your fear, I feel it for my Bec in the future too.
Enjoy your walk....M x
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I had help with the spitwads but I'm not saying who. Hope you cleaned the bag before today's appt. I'm sure M will start packing essential oils to disinfect the bag.
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I can empathize with your fears Ariom and Granwe. That was my first grateful thought when I got the news. I can't give it to the baby. Lets hope by the time she is old enough to be tested that there is a cure.
So sorry M about your flare. It's hard to watch a loved one decline. I think we treat our pets better.
Granwe. I want to go for a walk and see the fountains. I love fountains. Music and colored water make them even better.
Took kids in for a checkup and baby due a shot. Ugh. Need to go to the grocery but put it off until I get the boy. I'm worn out from the dr waiting room! Plus didn't sleep well last night. Hot flashes!
Good news DH says my hair is almost 3/8 - 1/2. Almost as long as his! Either the planets aligned last night or jello makes an awesome rice pudding. Kids wouldn't eat it but DH ate the entire pot! Said it reminded him of home and he washed and dried all the dishes. I need to make it more often:)0 -
What color(s) are you painting? I'm continually amazed at your stamina Granwe.
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I second the question. What color, Granwe? We need to do ours as well.
A word about all of you women 'giving' your bc to your daughters. While I certainly feel your pain surrounding this, and those feelings are certainly legitimate, and deserve to be expressed... you are, none of you, 'giving' anybody any breast cancer. Do you think your mother or grandmother 'gave' it to you? Certainly you don't. My grandma died at my age from bc. It was while I was waiting to be born. I am named for her. It's never crossed my mind that she gave me bc. She did give me a raggedy annie dolly, though, which she had made herself, and gave to my mother to give me, because she knew she wasn't going to be able to see me.
They have all of these tests now. Don't I know it, right? We women can get tested and take charge of things now. And the increase in chance for a bc does not mean a woman will get it. So cry your tears, then dry your tears! Granwe, the only thing you are giving your daughter -- and the new baby -- is an exemplary role model of what a real woman is. A real stand-up woman, who fights for her family, and shows them what real beauty is. A woman who can make a surprise birthday dinner special at the drop of a hat, out of nowhere. My mother has sought to ruin my last two birthdays, as you know, by holding family parties on the exact day and entreating people to focus on those parties rather than celebrate with me. Last June, as you know, it was her retirement party. You give your daughter wonderful birthdays, and nutrients! And you give our baby nutrients.
The same goes for all of you. Even me and Z. Z, I am ashamed of your behavior in the bag. If I did not love you so much there would be some sort of punitive activity. But those don't work with mothers. Go to your room? Yes please. Go to bed early? Ditto. No dinner? I'm too tired to cook for myself anyways!
Okay. Just got back from the PCP. She asked about America's Favorite, then said she was going to have a word with her. She said I was perfectly within my rights, it shouldn't be AF's decision, it is a legitimate choice. And she's going to try to get me out of the psych consult. My PCP: You are in no way in need of a psych consult.
She also suggested the other surgeon in the practice, the GP, should this not work out. But she agrees with my thought that a surgeon need not be the most touchy-feely person in the world -- she just has to be on my team, and willing to cut. That's why I'm not villainizing AF. Who is to say the other one would be any better?
So. My PCP is calling the BS today. And then she's going to call me. Meantime, my MRI has been moved up to now, which in this case is a week from Sunday. Sunday MRI! We can all REALLY be in the bag for that one. Scared of MRIs, always have been. Who's holding?
XXX
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I'm holding. Just think of the noise as my children banging their pots and pans. The baby loves pots and pans. Then hum nursery rhymes. Got me through mine. I swear it sounds like pots and pans. My children are noisy!
Thanks for the attitude adjustment. You're so right!0 -
ND, The 4 boys are grands. I have one son and one daughter (who's not happy about my BC raising her risk). At least she went for her overdue mammo. I was raised by my mother's side of the family and none of those women had BC. Several made it to their mid 90's. I don't know much about my father's side, except they have high BP (which I have) and heart troubles. I have a younger half sister that I've never met and know nothing about. I suspect BC is more related to environmental toxins than genes, except for the BRCA 1 & 2.
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Bobo, you bet I am holding! Sounds like a very productive meeting pcp, seems to be reasonable. an mri on Sunday? will be there. I have never had one but dh has had several. I also am just a little skeptical about gp for breast removals.. I know people in my area have had them in the past but not so much now.. they may do a fine job, but would you be comfortable? only you can decided that, thank God no physc test or hopefully at this point. Never heard of such a thing for someone who has been down the path you have. Oh about sewing pink dresses.. sorry i dont sew, but could maybe think of something else
. sorry to say this but your mom sounds like a piece of work! what will it take? I feel bad for anyone not having a good solid relationship with their mothers, I did the traditional mother/daughter dance with mine when a teenager, but we were always there for each other.. we were different personalities for sure, but still loved each other fiercely.. wish you could have had that, but right now you do not need the extra stress.Zills sounds like she has the mri mastered.... all you gals have so much insight to things I am just amazed at everyone on here.
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Bobo, your beautiful words made me cry and smile. I guess it goes without saying that I adore my children and grandchildren, they are my everything. Even tho I don't blame my mom for my BC, I once again dug into my cancer bag, where all test results are stuffed and read those words that made me cringe, genetic predisposition for BC. Since I am uninsured, I was discouraged from having the BRAC testing by the MOs office due to the high cost of the test. They did the preassesment but not the actual test, now I'm trying to figure out a way to have the test, just so we know more. Maybe that way we can be proactive in the future. Okay I didn't come here to discuss that junk. I came to tell you a cute story. My DIL and baby Houdini met me at the park to walk this morning. There is music that plays throughout the park not loudly but enough so you can hear it in most spots. At certain times the speakers near the fountain come on and the water is choreographed to certain songs, on one of our trips around the fountain it happened. Little Houdini was in his stroller so I stopped pushing to let him listen and watch, he sat for a moment looked at the speaker then at the water, then it was obvious that he got it. He knew that the water was dancing to the music and began laughing the deepest, happiest belly laugh I've ever heard. He clapped his tiny hands and then he began moving to the music too. One tiny very special moment that made me so happy. One of the best parts of being a Gram is watching them learn.
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Bobo, I had a breast MRI and it was my first ever. They had me lay on my stomach, so I couldn't really see the machine. They give you ear plugs, but it's still really noisy. Pots and pans is a good description. ND took the words out of my mouth to describe your mother. You're probably right to keep her in the dark as long as possible. Sounds like she would find some way to make it all about her.
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Birdie, you are exactly right. The only time she knew about this -- back in 2008 -- was just a bloodbath. She used the info of my PMX to get soooo much attention for herself. It was crazeballs. And she doesn't really care, obviously, so I don't gain anything from talking about it. I told no one about my April surgery at all -- not the surgery, not the results -- and it was great. I would definitely do it again (obviously DLLP knew). I won't be able to hide this one as easily. But it's possible that I could wait until it's over, if DLLP can 'stay cool'...
ND, you're holding, huh? You make me smile. We will find something to make for the baby. Granwe, I just loved that story about your smart Houdini. He is the one who had to get into your shirt, isn't he? Love him.
I have already had what seems like a million MRIs. They've never gotten that much easier for me. I always cry. It's like a reflex now. I think it started with the very first one, how awful everything was, and now I'm just like an animal who can't stop being scared of them. Will try the pots and pans thing. But I'm also thinking... I've got one Valium left from the endometrial biopsy. Might add an Ativan or two. How many, do you think? I must say, I don't think Ativan effects me when the chips are down.
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Bobo
DH had an MRI, they gave him head phones, asked what radio station he wanted. Maybe you could take an iPod with your favorite music? Worth a call.0 -
bobo, when I first talked to my BS re BMX she said my ins wouldn't cover it. I checked with them and they said yes. Then she tried to convince me that I could have problems with the non bc MX. I saw no validity to that comment. I stood firm and she still pushed a bit but finally agreed I was doing what was right for me. Even to the time right before they wheeled me in she asked yet again was I sure? I said just a touch peeved, "if I had 3 boobs, I'd have them all removed!" OK then, lets do it was her response. Down to the wire she wanted to be sure, but there was never a thought to have a psych review. What this BS is putting you through is downright cruel and a bunch of bu11 sh1t!
I think Zills may have a good idea. Find out what you can about the GS. That may be a better fit for you. And you did say you were going to request a PS for the close so that may be a plus toward the GS.
ndgirl, no snow here but the mountains have more now than they did a day or two ago.
gramwe, spot on!! You are so right! Boobs and reprductive organs do not a real woman make!!
Gotta run, no time to read any more now. Have some orders to ship. Will be back later.
Hugs!
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Granwe, what a beautiful story... thank you for telling us about it.. I have a huge smile on my face and I'm just glad he stayed out of our shirt this time hahaha. Congrats on the baby girl news! I too want to know what color the Bedroom/bathroom makeover is. I still have to decide what to do in my bedroom.
Bobogirl, i am relieved we are getting the MRI business out of the way... take whatever you need to take to make you feel better ... I am happy to hear they are listening to you and I dearly hope that America's fav hopes on board and we can have you putting all this shit behind you... that's right.. I am swearing.. it's just not right and I am RELIEVED to hear the PCP is in agreement... you should have told her you WOULD need a psych consult if this roller coaster shit didn't stop.. yes I swore again.
Bobogirl, I love you word(s) on giving BC to daughters... do you still have the raggedy ann dolly?
Granwe, you are a role model and then some.. I too am astounded over your energy and your good humor over everything.
Bobogirl, your mother defies description and I am sorry you have to deal with her again... take Zils advice (does she not give the best damn advice around?) from the last time and do not cater to her.. don't let DLLP do it either. Did I read correctly that you were having a spat with DLLP? I sense that you are always doing doing doing and turn away assistance from others.. which I am also guilty of doing.. but once in awhile you need to let them do for you!!!
Zils! Congrats on the hair growth! Is yours growing in evenly??
Moira, hearing you are a bit down made me so sad... I hope that you are feeling a little better now. I know what you mean about Colin's mother... although I am sorry to hear she is doing poorly, we are faced with a similar circumstance with my grandmother who will be 101 in a couple of months and has deteriorated so much in the last couple of years that is just makes you so sad and you just wonder what is the point.
I have to agree with Wren, there has been no evidence of BC in my family as I just said my mother's mother will be 101 and my father's mother is late 80's. My great grandmothers both lived in their 90's. My grandfather's both had cancer, but I was never thought to be a risk.. so you really can never know.
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Yep, a spat with DLLP. She was being a selfish pig on the day of the BS appt. Even she recognized it. Which is really something, because she tends to never admit she is wrong.
Of course I still have that dolly! She is a much-loved dolly. Charlotte loves her now. She has a heart on her chest, hand-sewn, that had 'I love you' sewn inside it. That kills me. She is a sweet dolly. I too want a Z hair update.
Have no idea the impact the PCP will have on America's Fave, although the idea of the GS with a PS to close is a good one. They are friends, though. I don't want to get in the middle of any drama. I am beginning to really not like the feeling that none of this is in my hands. After five years. I feel like I'm waiting for someone to call me for a date. I'm trying to stay neutral, and even, but I feel angry. Better cover that up for the psych appt! Don't want to land in the bc looney bin.
GrammaB, good story about your BS. She gave you the Japanese rite of three refusals. I wish that was what this is. I don't think so though.
Idesim, how are you after Herceptin? M, how was your day? Poor M.
I am on pins and needles! XXX
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Spookie, that is such sweet advice. I will take i pod. But I'm going to double down on the Ativan also. When push comes to shove, I'm always so stingy. Why? It's my goal to reverse this situation beginning with this next appt.
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OK, I am back after a good sleep, rheumatoid has settled somewhat, and I am thrilled that our Bobo has someone in her corner who will speak to that irritating BS.
I am on board for the MRI, hate them myself, but have to say our Colin goes swiftly to sleep as soon as he is put into the chute. He's just so calm about everything. Pots and Pans or Roadworks is the sound.
I feel we may be getting closer to a resolution for Bobo, and as has been mentioned, you don't have to be BFF with your surgeon. I am just thankful that there is someone going to intervene and try to talk some sense into Americas Fave. Psych appointment diverted, I hope:)
ldesim, thankyou! I am all better today!
I know the stress about Colin's Mother is futile. I rarely go to see her these days, just if Colin needs me. This stage was the most difficult for me with my own Mother. It is a kind of limbo between here and the next life, so terribly sad.
I agree about our Zills advice! She's got it, nailed and sorted!
gramwe, I am always so moved by your writings here. I have to say I lay no blame on my dear Mum, for my Dx, but naturally fear for Bec.
I love the stories of your Houdini gs! Dexter is nicknamed Houdini too. He will find a way out of everything. When we had the new fence constructed, Colin measured Dex's chest to make sure that he couldn't fit through the rungs. That didn't stop Dex from trying every single opening for the entire length of that fence.
I love the story of the recognition of the music and the water, what a wonderful revelation that must have been, for the very first time.
Wren, I was so sorry to read of you losing your Mother so tragically, and so young. I am an only child too, that must have been really devastating for you. I never knew my Grandparents, they passed young and we had moved to Australia before the last one passed. I only ever knew my parents.
Zills, I am packing the essential oils!
Have to run, the guest is up....I'll be back....love to all...M x
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Zills, there is something you need to know, YOU are my hero. All of us have had our struggles, in my heart you are the one who has stepped up and over come some difficult adversities. Through all the medical "stuff" you put yourself second, the children and your family has been your first priority. You manage to see the beauty in nature, care for kittens, and even when so very sick from chemo, you still make the time to brighten our lives. I gain strength through you everyday.
M, you glide through the manner in elegant grace. You have taught us all how to be lovely, graceful and self assured no matter the trials. You have paved the road to better health, and beauty for all of us. You lead us along the foob highway by blazing the trail. You've taught us the graceful way to embrace our new normal. Thank you.
Bobo, our tough on the outside, but mushy in the middle angel. To the real world you are every woman. You tuck all your uncertainty into its own little neat package, pop on your bitch bonnet and tell the world to bring it on, you can take it. You put everyone and everything in your life on the high priority list, and put yourself to the side. I adore you! With all the stuff going on in your own world you care enough to make us pillows, and knit us foobs. Without you in our bags, our medical visits would have been scarey. Knowing even metaphorically that you were in the room has for me meant the world.
Idesim, even on your way to treatment you took the time to enjoy and share the blooming vegetation with us. You made your way through a bombing to have your drains removed! Throughout your own journey you have shared, loved, and laughed with us all. You have continued to work, wig an all, and have given us strength through your strength. You taught us to eat on the coffee table, when at times we didn't care if we even ate. Thank you too.
Gb, where to begin. You walked into this journey quietly asking questions. Babe you jumped into this with both feet and head on. You were the most prepared and the fastest recovery of us all. You did it on your own and your way. You and the cat taking it on and coming out ahead. You have show us to be prepared for the worst, but expect the best. A very valuable lesson.
Nd, your contribution has been to keep your head up, face adversity head on, and win! Much like the farmers I admire you for standing up and fighting the forces of nature. Not only have you faced the forces you are winning. Throughout your journey you too have found and embraced the beauty of the world. You have taught me to stop and breath, to look at what's around me and to enjoy each precious moment.
Wren, you have shown grace, love, and wisdom. Not only through your post on this thread but through your posts on other threads. I always look forward to reading your words, because I know that there I can gleen wisdom that I might have otherwise missed. You are a treasure.
In closing I guess all I'm really saying is a big Thank You to you all. Each of you, weather I mentioned you by name or not are so very important in my life. You each have given me more than you will ever know and I honestly love you. Thank you for holding my hand, listening to my rants and sharing. I'm proud to call you all my friends. With many heart felt HUGS. I love you all.0 -
Gramwe.. thank you for the beautiful words, I have tears in my eyes and they are tears of gratitude that I have you and all these wonderful woman here to share my life with.. we may never meet face to face but I feel each and every one of you are very special! I am in awe of Zills and Bobo, going thru cancer struggles of every kind but yet being the best mothers, having young children is a huge job in itself but dealing with cancer along side of that is something I can not even imagine.. you two are an inspiration to me.. and all you gals, and I love all the humor, laying out our emotions is so easy because nobody here is going to judge we are in the same boat.
I am going to bed and I will sleep tonight! Thanks again Gramwe, you soothed my soul!
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Oh dear!
I just snuck in here while the others are chatting over lunch. Now they want to know why I am upset!
Not upset at all, just "Having a Greet" as the Scots would say. Happy Tears for the words of a wonderful friend. You put it so eloquently, gramwe, describe our girls so well.
I thank you for the kind words spoken to me, gramwe!
Love you all! Moira x
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Gramwe, you are amazingly eloquent. Do give some consideration to writing as a pasttime or career. You have the talent. I'm still laughing over the scene with the octopus and the elderly couple.
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