Somebody get me an umberella...!

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hummingbyrd
hummingbyrd Member Posts: 950 Member
edited March 2014 in Breast Cancer #1
Talk about when it rains it pours!
Brother went to MDAnderson, they say they are going to put in a central line. Port takes up too much time and costs them too much money to tie up OpRoom!
Head 'em up...moooo've 'em out. Gee whiz.
AND NOW....
Bone met in my right arm shows erosion since 2/02.
I say radiate it again, doc says put a pin in it.
YEAH! Let's stir up those cancer cells.
Doc says chemo, I say poisen my whole body again for one spot? He says, 'you think it's one spot, but it's through out your body'.
Checked him off my Christmas list! LOL
Gee thanks, doc appreciate you cheering me up and all. With docs like you who needs a mortician?
Give me a break! Just not in my arm!
Any advice? Anyone had a bone met rad twice?
Anyone know of a good rad onc?
On a serious note, thank you all for the prayers for my brother, myself and my family. I'm sure that's whats holding me together right now.
God bless. hummingbyrd

(Never could stand for my brother to get more attention than me, but this is ridiculous!) ; }

Comments

  • Sandis
    Sandis Member Posts: 85
    #2
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    I'm sorry I don't know the answers to your questions, but you are in my prayers. I wish I could give you and your brother a hug. I feel bad that it sounds like your brother is being treated so insensitively. I've never heard of anyone being told they can't have a port because it takes up too much time. I suppose he can't change treatment facilities because they have the best protcol, just not the best respect for patients. Anyway, know that we're all thinking about you and your brother.
  • jeancmici
    jeancmici Member Posts: 665 Member
    #3
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    You're right about when it rains it pours- it does seem that way often!!!!

    But they only radiate an area ONCE - believe me I checked that out which is why my onco wants to wait on any radiation if i can wait. My pain is a bit better these last few days - WAIT - where's that wood I need to knock on?

    I don't understand the erosion part you mentioned - do you mean more holey? Yes, it happens unfortunately and a pin may be the answer.

    Wishing you and your brother who is at a really difficult time, the best of treatment and good results. God bless both of you.
    Love, Jean
  • ktinkey
    ktinkey Member Posts: 170
    #4
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    Hummingbyrd,

    Take several deep breaths in and out and then go kick Satan's butt. He is not going to win, but he is pulling out the big guns. Remember, it is not My God, I've got a big problem, but Problem, I've got a Big God!!

    My oncologist is a great doctor, but she is to the point also. She tells me all the time once you have Stage IV cancer, it means the cancer has traveled all through the blood stream and it is only a matter of time before it roars its ugly head somewhere else. They never speak in terms of cure at our stage, only in terms of remission (waiting for the next bomb in layman's terms). They don't want us to be unrealistic about our disease. That is fine, I just don't have to buy into it and neither do you. God is so much bigger than all of them combined. Pray and let God lead you in the direction of treatment He wants you to follow. Romans 8:28 "And we know that in all things God works for the good of those who love Him, who have been called accroding to His purpose". Verse 31, "What, then, shall we say in response to this? If God is for us, who can be against us?" (NIV) I need this word as much as you. We are all here for each other and we are all on this site for a reason. Your fight is our fight, so girlfriend, you are being prayed for and together we will kick satan's butt!!

    God Bless,
    Kathy
  • rizzo15
    rizzo15 Member Posts: 153 Member
    #5
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    Hummingbyrd. You are the inspiration for all of us. I'm sure all will turn out well for you. I am a firm believer in the power of prayer and will certainly offer a prayer for you.

    The reasons for MDAnderson to deny a port sound totally bogus to me. I had mine installed as an out patient. 3 hours from setting foot in the facility to walking out again. Except for the need for an anesthesiologist to be standing by during the procedure (just in case), the cost was not extraordinary. Maybe what they are really saying is, "Your insurance won't pay for it."
  • DeeNY711
    DeeNY711 Member Posts: 476 Member
    #6
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    ktinkey said:

    Hummingbyrd,

    Take several deep breaths in and out and then go kick Satan's butt. He is not going to win, but he is pulling out the big guns. Remember, it is not My God, I've got a big problem, but Problem, I've got a Big God!!

    My oncologist is a great doctor, but she is to the point also. She tells me all the time once you have Stage IV cancer, it means the cancer has traveled all through the blood stream and it is only a matter of time before it roars its ugly head somewhere else. They never speak in terms of cure at our stage, only in terms of remission (waiting for the next bomb in layman's terms). They don't want us to be unrealistic about our disease. That is fine, I just don't have to buy into it and neither do you. God is so much bigger than all of them combined. Pray and let God lead you in the direction of treatment He wants you to follow. Romans 8:28 "And we know that in all things God works for the good of those who love Him, who have been called accroding to His purpose". Verse 31, "What, then, shall we say in response to this? If God is for us, who can be against us?" (NIV) I need this word as much as you. We are all here for each other and we are all on this site for a reason. Your fight is our fight, so girlfriend, you are being prayed for and together we will kick satan's butt!!

    God Bless,
    Kathy

    I absolutely loved your definition of the word remission. It made me laugh and holler YES all at once.
  • jake10
    jake10 Member Posts: 202
    #7
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    As far as I know they don't usually rad a bone area twice because it will always break/crumble and need a rod/pins anyway. But I would get a second opinion before I got the surgery. (From another group of Rad Onc. Beth
    You are in my prayers.
  • DeeNY711
    DeeNY711 Member Posts: 476 Member
    #8
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    Hummingbyrd, my first port filled with clots that moved up the arm and lodged at the junction of the jugular vein, almost killing me. The second port became infected and was removed before it could cause endocarditis. The reasoning for the central line seems lame, but maybe there is a plus side to the central line.

    You might be more comfortable this time seeking a second opinion on what to do with the bone erosion. Most doctors do not resent having a patient seek a second opinion because it takes part of the burden of decision making off of them.
    Hugs, Denise
  • me2
    me2 Member Posts: 20
    #9
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    DeeNY711 said:

    Hummingbyrd, my first port filled with clots that moved up the arm and lodged at the junction of the jugular vein, almost killing me. The second port became infected and was removed before it could cause endocarditis. The reasoning for the central line seems lame, but maybe there is a plus side to the central line.

    You might be more comfortable this time seeking a second opinion on what to do with the bone erosion. Most doctors do not resent having a patient seek a second opinion because it takes part of the burden of decision making off of them.
    Hugs, Denise

    Hummingbyrd you are always an inspiration to everyone. My prayers are with you and your brother.
  • Unknown
    Unknown
    #10
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    If we can't be your umbrella, we'll send you showers of prayers!!!Hope you find your answers!
    May God wrap His Holy Spirit around you.
    love, Getupandgo
  • badger
    badger Member Posts: 23
    #11
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    Oh, byrd - why is it that the people who make us feel the best are those who get all of the fecal matter thrown upon them? Not fair, not fair. But your spirits will prevail --even if those are Jack Daniels spirits!! We are all thinking of you and praying for you and your brother. Not much else we can do, except to hold you in our hearts. Love, Badger. email me whenever you want - badgerj@erols.com
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    #12
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    badger said:

    Oh, byrd - why is it that the people who make us feel the best are those who get all of the fecal matter thrown upon them? Not fair, not fair. But your spirits will prevail --even if those are Jack Daniels spirits!! We are all thinking of you and praying for you and your brother. Not much else we can do, except to hold you in our hearts. Love, Badger. email me whenever you want - badgerj@erols.com

    Thank you all for your very compassionate responses and prayers. I love you dear sweet ladies!
    badger...I seem to have walked into a sh-- load of fecal matter, but ya know what...I'm digging through it like crazy, cause with this much poop there MUST be a shetland pony around here somewhere! Maybe a whole herd of them! LOL
    I've been searching the internet for an answer ladies. They say this stuff is not curable at stage 4, well I say 'hogwash'.
    Mark 9:23
    Everything is possible for him who believes.
    I believe I can find a cure and when I do I'm gonna share it with all of you. AND...if I don't I'll see you all in heaven. Either way looks like I win! God bless you all. hummingbyrd

    If you want to know how to get to heaven go look for directions at www.urcctc.com Don't want any of you to get lost, now do we? (((HUGS))) hummer
  • maggs
    maggs Member Posts: 164
    #13
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    Dear Hummingbyrd,
    Glad to see you've kept your sense of humor-I've missed it! Since when do the docs listen to the patients, anyway?
    On a more serious note, maybe the central line has benefits over and beyond the port! I think I had one for awhile and it was beneficial to have three entry places for all the different medicines and antibiotics, etc.
    By the way, I loved the picture of you and your boys that I saw on this site! Wonderful family you've got there. And you are a wonderful, brave, and strong woman for your boys and brother, too! They are lucky to have you. So are we!
    I'm having some back pain and I hope it's only arthritis. I will keep you and your brother in my prayers; please keep me in yours! Maggs
  • cinder
    cinder Member Posts: 50
    #14
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    Hummer,
    So sorry to hear about all that you are going thru. You know you will for sure be in my prayers. I haven't been here for awhile, have been really busy. My friend Jean is not doing too good and her father has put himself in a major state of depression,so I've been pretty busy with them (he should get his report back on his biopsy tomorrow)
    I am taking special time to say a prayer for you and your brother.
    Cinder
  • Snookums
    Snookums Member Posts: 148
    #15
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    cinder said:

    Hummer,
    So sorry to hear about all that you are going thru. You know you will for sure be in my prayers. I haven't been here for awhile, have been really busy. My friend Jean is not doing too good and her father has put himself in a major state of depression,so I've been pretty busy with them (he should get his report back on his biopsy tomorrow)
    I am taking special time to say a prayer for you and your brother.
    Cinder

    Shopping list-
    1. rubber boots for sh_- piling up
    2. GOLF sized umbrella for rain
    3. Fan for sh__ to hit
    4. 2x4 to knock on with my head
    5. Large box of salt to put in wounds . . .
    6. box to ship it out to you my favorite birdie! I have and will continue to keep you in my prayers as always. GOd is with you and His will be done but couldn't He at least send you a quick e-mail update to keep you in the loop? Answers we want will come one day for us all- OXOXOX- C
  • jolliff
    jolliff Member Posts: 12
    #16
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    Oh my! You and your brother and your family will be in my prayers.

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