I think I have a problem
Comments
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Dear Annie,
Who never ate his bread in sorrow,
Who never spent the darksome hours
Weeping, and watching for the morrow,—
He knows ye not, ye gloomy Powers. Wilhelm Meister. Book ii. Chap. xiii.I don't know if you have a faith of any kind, but faith is what gets me through those times. "Perfect love casts out fear."
Here's to a better week this week. Have a doc check out your rash soon!
Hope M.
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I have just read this entire thread with my hand over my mouth. This has got to be one of the worst doctor stories I have heard in a long time....well ever actually. What a complete idiot...and at your expense. I thought I had many issues with doctors but your issues are much more maddening/repetitive than mine.
I will read every single post you write. You have a most beautiful sense of humor...I smiled while I was cursing like a mad dog.
My thoughts will be with you all day tomorrow.
Shirley
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Annie, my friend,
I hate that you are going through this, and will have you in my thoughts tomorrow morning. Waiting for results sucks. I did want to throw out the idea that some of your physical reactions may be stress - when I did rads, I was so scared that I sent all the tension into my back, and had a terrible time.
Be watching for your updates - the biggest flank is me, feel free to lean.
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Annie,
So much has happened in such a compressed manner that it all lumps into a seeminly unending circus of pain. Break that mold, will you please!!! (as if)
And now your daughters are angry. That's almost worse than the other issues right now. I hope that whatever is coming between you resolves quickly.
Yes, I like Goethe, though haven't read him a great deal. My youngest son, now away at college, spent preschool, kindergarten, and first grade at a Waldorf School. Goethe's color theory and other ideas are used heavily.
Hmmm...I wonder if applying his color theory to our homes would help us stay centerd in this chaos of BC. It certainly is effective in the classroom.
Peace,
Judie
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Dear Annie,
We are all here for you. Holding your hand, rubbing your back, listening to you and understanding the deep trial this has been for you in every way. I believe in the healing power of goodness in the world. You have us all and we "have your back." Sleep well tonight and know that we are all with you throughout your day tomorrow.
femme
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Annie -
You have to manufacture the "normal" days - or whatever passes for normal once you are dx with cancer. In the middle of chemo, one day when I was feeling good, I managed to go for a walk on the beach. It was only one hour in 12 weeks of hell, but it made all the difference.
Hope you get not terrible news tomorrow - thinking about you
susan
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Annie,
Thinking of you this morning (New York time is 9:00) as you go for your report and rads. Fingers and toes crossed that's it's not terrible news, and hopefully even positive news. As all the elephants gather around you, I hope you find strength and peace from our support.
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Dear Annie,Enveloping you in our arms, may you feel our support and quite whispers. You are not alone, but rather have so very many who care deeply about you and wish you very well today and beyond.((Hugs))Tender
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Hi, Annie,
I wish you lived next door to me. I would bring over a nice bottle of red wine, some cheese and crackers, and of course fine dark chocolate--a camel's favorite trreat. And we'd paint our toenails and laugh and gossip and curse this sucko disease and all the changes it brings to our lives.
Sigh. But we're not neighbors, so just know I'm thinking about you.
Anne
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Hi Annie,
...and I'd keep re-trying my chocolate cake, based on your Reine de Saba hints, until it was properly crispy on the outside and molten in the middle -- and we'd all have to sample all the efforts...
Ann
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Annie,
First, I'd like to be present at this cybersister's neighbor get-together. I make a helluva chocolate chip cookie (I can't cook beef to save our lives, but boy can I make dessert!).
Now, about the lack of sense of closure and angry daughters.....my first reaction to this is that your daughters are probably not really angry at you, but after having lost their Daddy, you are probably the easiest and fastest target to outlet any ill feelings. I am speaking to you from the Daughter point of view on this one. After losing my Mom in 94, I was often taking out anger on my poor, unsuspecting Dad.
Now that he's been gone for a year, I realize I STILL carry guilt over that!Leading into the never getting to say "goodbye" struggle. I didn't get to say "goodbye" to my Dad, either. There really is no magic formula to get us over that, is there? We absolutely have to move forward. NOT move on. I feel there is a big difference. Moving on implies that you are leaving him behind in the proverbial dust. Moving forward implies that you are heading in a new direction.
I hope this is getting easier. What a horrific experience to go through without having your sisters by your physical side. I do hope that our presence is enough, and that it fills your spirit with peace.
Love and prayers, Deb
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Hi all,
There's no news tonight. The oncologist's office called to say they haven't gotten the report, but I have a feeling the radiation oncologist (she who ordered the scan) will probably tell me the results tomorrow morning when I go for rads. She's apparently never in the local office on Mondays, so I didn't see her today.
I wonder if one day we all really CAN get together, paint toenails, drink Margaritas or wine, eat chocolate, crackers, cake, and cheese, and gossip about all the men, children, and other people in our lives. We'd all wear pyjamas and sleep on the floor on big fluffy eiderdowns, and drift off while giggling and talking. What heaven that would be.
Love,
AnnieCamel Feathers (betcha didn't know camels have feathers!)
Edited to add: As far as the saying goodbye issue is concerned, I also have tons of guilt associated with that situation. He was the love of my life, the father of my children, and in many ways my soul mate. However, he was not a very good husband, and I ended up leaving when my girls were grown. So, you can see where it's not an easy situation for anyone. I'll always miss him.
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Anne,
I had like a hard brook stone under my arm, and it keeps getting smaller and smaller. The BS drained it once. The ONC keeps feeling it, and did not like feeling something under my arm (!!) but an MRI showed it was nothing. I was told to do scar massage, which I do a lot, and it is almost gone, even the ONC said it was changing and getting smaller.
Another ONC and my BS have said it is just scar tissue. I bet you will be just fine!
The waiting makes us all bananas!!
Springtime
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Annie, Camel tail???
I touting my best jammies for the occasion. Bringing cheetos and wine. How could that be wrong?
Hugs
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I'm so ready for this slumber party!
Annie, hugs and sleep tight,
Ann
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Dear Annnie,
Human beings are complex creatures. I am sure that the father of your children and you had many happy beautiful times together. You must rejoice in that. I am also sure that when you left your husband, you took all the information that you had available and made the best decision that you could make. Annie, there is no way that you can convince me that you did not live your life with honesty and integrity.
This C disease cause us to review our life and actions. As we all know, hindsight is 20/20 and time tends to soften the edges of our memories. Please Annie, don't beat up on Annie. You are a wonderful woman and that is why you have so many of us caring about you. It is your intelligent humanity that has touched us all.
And please try to stop putting your past under a microscope. Every deep human relationship is so often unintelligible to those who are not living it. (And often unintelligible to those who are living it)! Your daughters are doing the best they can during this very difficult time. They are casting about in their pain. They love you and you love them and you three are alive together... This we know. Please be kind to Annie, Annie.
femme.
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Very well spoken last sentence, femme.
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Hi all,
Thanks for your wisdom, perspective, and affectionate support. Unfortunately, the news is not that good. It has moved into the bones, and I now have hotspots in right shoulder, right hip, and one vertebra in lower back. They are very tiny, so perhaps I had them already at the last scan four weeks ago, but the machine wasn't sensitive enough to pick them up. For right now we're apparently continuing with the Xeloda and the radiation to get the local recurrence under control, and then moving on to some other chemotherapy. I hate the idea of being on chemo for the rest of my life, but I guess I have no choice. I wonder how long one might have once it moves into the bones? My dad lived nearly 18 years after being diagnosed with metastatic prostate cancer, but I guess that's a different type ...
Love to all,
Annie Camel Shoulder
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[Expletives deleted.]
I HATE CANCER.
Annie, I am so sorry.
I know from reading other forums that bone mets are managable, and that you can have a good long run ahead of you, but I wish you didn't have to do this.
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Aw, Annie... no, not mets! Can I say curse words here? At least 4 or 5 really good ones came rushing out of my mouth when I read your latest post.
Even though this news is bad, it was a wise thing to get that referral to SA for the combined CT/PET. From what I've read, that's the best way to figure out what the hot spots are on a PET scan, which doesn't show anatomic detail like a CT does. Now you know the treatment plan has to change. And, I know how much we hate to hear this from other people, but I'm going to say it anyway because it's true: at least the mets were discovered early, when they're still very small.
As for bone mets: I've heard people say that if you're going to have mets from BC, bone mets are the very best kind of mets to have. They can be treated and controlled, and sometimes even made to disappear. Someone with bone mets can live for years and years (and years). Check the mets board (I know you've been there already)--those women will tell you the same thing.
Annie, this is mind-numbing news. One thing to think about is getting a biopsy done of one of the met sites. That is the only way to know for sure whether those hot spots really are mets, or something else. And, the receptors on the BC cells can change sometimes. I don't know how quickly that can happen, though. Now is the time to consult with that doc at MD Anderson.
Big hugs, Annie...
otter
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Annie, If I wern't a southern lady, I would be cursing up a snow storm for you. I hate to hear that you have mets. But as Otter said, bone mets can be treated easier than other types of mets.
Sheila
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Oh Annie, I'm so sorry to hear this... this truly sucks. The "good" news is that it's bone ~ you know this from the mets board, so hopefully it's helping you at least a little as you process the news. Thinking of you,
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Well, that's a sock to the stomach. I'm feeling so awful for you, Annie. I second Otter's opinion that at least one of them should be biopsied so you're sure you're dealing with mets and not something else.
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Sheila may be too much of a sweet Southern gal to cuss up a storm, but I'm not! I just let out the roughest string of cussing ever. And it didn't make me feel one bit better.
Bone mets. I first thought of Elizabeth Edwards. She is living life fully, despite personal issues. You will, too. I know you're going to hit the camel pits of despair, wondering when your flame will be snuffed out. And none of know that, babe, so all we can do is suck it up, be stoic for everyone else, and keep living. (Don't be stoic here, though. No need for that.)
Yes, a new treatment plan will be on your way. TIme to cut ties with Gary. He's been nothing but bad luck for you. Damn, I'm mad.
Damn.
Anne
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I'm not a southern woman - I'm a kid from NYC who grew up with a taxi cab driver as a neighbor - many many many cursewords being aimed at the mets.
Big virtual hugs being aimed at you.
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I hate cancer.
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Well, I'm cursing.
Also hoping that maybe what you have is actually very much like what your father had.
Will you be making a trip to Houston?
I am so pissed off.
But I want to echo what Femme said, above: "please be kind to Annie, Annie" !
And make sure everyone else falls in line with that, too!!!
Love you.
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Having been on these boards for about 5 years, I've definitely seen bone mets survivors of over 14 years. If the mets respond to treatment, they can be controlled indefinitely.
Chocolate, wine and comfy PJ's--heaven!
Hope M.
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Oh, Annie - this wasn't what I'd hoped to read.
CUCK FANCER!!!!
You do everything 'right', you treat as aggressively as hell, you endure it all... And still its vile nature comes up to bite you in the ass. I am ANGRY for you, it is unfair and without justice.
Thank God it is small isloated areas (tiny, you even wrote!) and you have a strong constitution. Those bits won't have a chance! Hey - See if you can get something to biopsy ER+ and you'll be around until your dotage!
Now get to Dr. Valero - - -
Lisa
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So very sorry, Annie.Tender
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