The Beast & Me: Round Two
Comments
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I'm so sorry!! Cancer just sucks! Prayers and hugs for you!!
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Hi everyone- I am sorry I didn't post an update sooner, but I have a bit of the stomach flu on top of all this! Either that or my body is finally revolting to all the news.
I REALLY REALLY LIKED the plastic surgeon I saw yesterday. he said he will FIGHT to get my insurance company to pay. he also said that since he does things that other docs in the area do not do- then the insurance company can't say no.
he CAN do the immediate silicone implant
he uses the Alloderm, which will help with my radiated side
he can get me the OnQ pump which a dear sister here told me about- and since I can't take pain killers it will save me!
But THEN he did something amazing- and I have to tell you something you already know- BREAST CANCER SURVIVORS ARE AWESOME! He asked two of his patients who were in other exam rooms if I could see their implants... and of course- sisters say yes. One was a week out of surgery and had an expander and the other was two weeks out with an immediate implant... they looked great. I started to cry I was so grateful to them. And of course- THEY UNDERSTOOD!
I just hope and pray that my insurance company doesn't screw this up. If all goes well with them- my surgery date is March 6th. I shake a little when I write that... but hopefully I will get stronger as these weeks go by.
I am still waiting on authorization on all my scans.
Besides my stomach- I just want to sleep now. I guess it is nerves...but I am hoping to get my act together soon!
We are having a really bad ice storm snow rain thing happening here...hope I don't lose power and heat!
When I feel better I will come back and spend the usual amount of time I do here and answer and post and be more productive member of this board!!Thank you for helping me and holding me up through this whole thing.
When I met with the plastic surgeon I couldn't help but think of all of you and hear you saying "HE IS GREAT! GO FOR IT!"
Happy Valentine's Day my sisters!
Love,
g -
g...wonderful update. You are right. BC sisters RATE!
But..your doc is awesome! Sounds like you have wonderful support from him and that is important right now.
Feel good. You have always been a great support to the women here. I, for one, would like to give that back to you if I can...
Wishing you the best. -
g..I am so happy for you..I've been praying that you find the right ps and everything will fall into place. Rest,your body is trying to get ready for the battle. You can do this..we are all there in spirit w/h you..wish I could do more...Philly is not far from NY...
Joyce -
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That's great news About that plastic surgeon, FINALLY!!!
From now on it can only go well.
Even so, will keep all my fingers cross for you
so the insurance will not
come up with "their things" again.
Have a Happy Valentine's Day.
And rest.
Hugs
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I love plastic surgeons. They are so awesome!!
Kisses for him!! -
G
Get the rest you need... no need to be productive right now, it's our turn to support you hun. We just want to hear how you are doing and to listen if you need us.
Glad to hear you like your surgeon ... sounds like you found a great one.
We are all there for you .... as you always were for so many of us.
Love
CherylG -
Hi Ns,
I am so happy for your news! I will keep my fingers crossed that your insurance comes through. You could use a break.
Sorry you are not feeling well. Hopefully that will pass soon. Take care and I hope you are feeling better soon.
Take care and get plenty of rest,
Jackie -
Gina, you have made me happy -- have made my day knowing that you have a WONDERFUL BS who is willing to fight for you. And, I'll bet he'll get the insurance company to give in. He's the doctor. What the hell does the insurance company know anyway!!
Get your rest. Take care of your stomach and let others wait on you.
When it comes time for surgery I think you will be very relieved. I asked people to pray that God would give me the strength to get through this stuff. He answered my prayers. When I went for my mast I was very calm..not at ALL like me. I let the anesthesiologist give me stuff in my IV to calm me even more just in case.
Take care of YOURSELF!
Shirley -
Where have I been? I am so sorry to hear of your new findings. It really does suck big eggs! Please be careful of any surgeon that tells you this is 8 -10 hrs. My bilateral with axillary dissection was that long and I now firmly believe it was because the plastic surgeon was not very experienced. My bilateral DIEP much later down the road with experienced surgeons was 5 hours with no complications (or at least very minor complications). My firsdt surgeon netted a long operation with more than six weeks of lingering major complications. I do so wish there was some kind of licensing agency that would help us weed out the inexperienced or less than desirable surgeons. I do believe that one of the issues are docotrs don't offer honest thoughts about one another. I do believe in your heart you need to trust the doctor you hire to do the job and not have any doubts about qualifications. Insurance companies have a unique way to make this joourney much more stressful and again I feel the insurance company should have much more liability to their decisions they force upon their subscribers. I do believe that me making my position very clear about holding them responsible may have been an asset to my winning my multiple appeals. I do not think one has the time or the emotional strength when active disease is present. Hoping this awful stressful time is short lived and an easy journey. Thinking of you!
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Oh, Sweetie, you brought tears to my eyes reading your post about your doc and how you feel! When I found my second ps and was able to finally exhale, I know just how you feel.
I am thrilled for you to be in such good hands and it sounds like he will take the ins. co to school on how it's done RIGHT.
Hope the weather and your tummy clear up soon and you keep feeling better and better.
((((hugs))) -
I am so glad you found someone you like! Great news. Receiving encouragement from other patients is invaluable. I'm a strong believer in instincts and it sounds like your instincts are giving this ps a thumbs up. I remember having a feeling a peace come over me from the moment I requested an information packet from the surgeons I used. You didn't have a good feeling about that creepy dr who hoisted his keister onto the table with you. You ran screaming (figuratively that is), kept looking and found someone better. You rock!
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Quote:
When I feel better I will come back and spend the usual amount of time I do here and answer and post and be more productive member of this board!!
Are you KIDDING me? You are worried that you don't seem especially productive to us? Now look here young lady, you don't get to help everyone else and not say "it's my turn, I need some support!" I don't want to hear that from you - you always chastised the Junies for doing too much! Now let yourself take support for a change! (read: go to your room and LAY DOWN and REST! No more painting and cleaning!) Meditate, read, pray, whatever...try and feel our warm fuzzies bonking you from cyberspace! -
Gina...Your post about the responsiveness of the PS and the 2 other ladies actually gave me chills! It's so awful to feel alone and so frustrated when you're facing this surgery and to get such support and help has to feel great. Hope you feel better and strong soon!
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Oh... I'm so happy to hear you have found a BS you have confidence in! That's great news.
G... you are human. You're allowed to be scared and out of sorts... I'd think it odd if you weren't!
Hang in there. I'm thinking of you often and hoping you are a little comforted by all the love coming your way!
Hugs,
Dana (Junie 2005) -
Gina,
So good to read that you have found a PS you trust and who sounds like a dr. with empathy for his patients. It always helps to have confidence in your dr. when you are facing surgery - especially surgery like yours.
Sorry you are sick with flu/ nerves - that is just what you needed. NOT! At least not having the surgery until March, gives you time to try and build yourself up before then.
Not a surprize about the other BC ladies but still awesome what they did.
Feel better darlin',
Niki -
Things are moving along... and so far no word from my insurance company that they don't think cancer treatment is medically necessary- YET!
I have all the scans approved and they will happen next week. These will help re-stage me if I need re-staging.
My surgery date is scheduled for March 6th- I have already planned to be released on March 7th. I have been planning escape routes from the hospital all day!
When I was diagnosed the first time I told everyone. It was therapeutic. THIS time- I don't want ANYONE to know. Isn't that weird?? Maybe because I just moved to this neighborhood last spring and didn't tell people I was a BC survivor- I pretended I was a normal person. The thought of everyone knowing my business is very unsettling. It really is a GOSSIPY street!
I think I am becoming anti-social or maybe I am just withdrawing inside myself to strengthen myself up. But I don't feel like talking to anyone on the phone or seeing anyone... I also think that because when I do all they want to do is talk about IT.
So- back to my exit strategy and my early escape from the hospital... do any of you know if I can get out earlier if I have expanders instead of immediate implants?? And is the pain less with expanders???
going back into my cocoon!!
THANK YOU for this lifeline to the outside world!
Love you,
g -
Maybe you just want to keep this trip as even-keeled as possible and just get through it safely and sanely. The first go-around was probably full of drama (I know mine was), but this time steady and straight through might be the more attractive way to go...? The sooner it's done and behind you the better, right? I get that.
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NS,
It's far more common
women not spreading the word around
over their BC problem then you may know.
There's thousands that had it and never talked about it.
May seem odd to some not wanting to talk about it,
that was also my option when I was dx.
and still today I keep with it,
Only talk about it with whom may understand, and even so...
I do not have to deal with the neighborhood gossip,
but not even to some of my family I went on details,
only those really close, very close know about it all.
To the rest, I never used a wig for instance, but ...
Seeing someone hairless
guess there's no need to make too much questions.
To some at the sight of it that asked "Oh geez! Are you ok?"
Goodness...
hairless, and standing, and above all shopping,
yes I am ok, considering the situation.
No need for more when one
just do not want to talk about it all the time.
If people do not understand this, that's their problem,
coz at this moment it's all about you.
We are one, and
how many people do we cross with during the day?
10, 20, 30, plus friends, co-workers, not counting
the all phone calls at the end of the day,
if all them ask the same normal questions,
even with the best of intentions of course
and no matter how much we cherish them for that,
sorry but to me sounds sadistic at some point
if one does not want to talk about it and
when one has to save mental and emotional energy.
By then and now if I needed to talk about it freely,
I knew and know with whom and where.
And one thing ...
About those sort of feelings
when meting the ladies at your PS office,
those that showed you some of the results,
I just wanted to add one thing.
At some point though what you saw do give us A LOT of hope,
at the same time can be a bit confusing and
we may get that "thing" of "OMG!! what am I getting into?"
That "thing" of no matter how good the results are,
deep there's that "thing"...
(Sorry I do not have better words for this in English,
but I can bet that you understand what I am talking about.)
Just wanted to add that ...
at this moment when we are on the other side of the mirror,
things like "adapting" and our ability for it,
have one meaning, after and with time ...
you will be very surprised with yourself
and the way you will adapt, takes time of course, not easy,
but the way you will adapt you can be sure
that overcomes all your expectations about yourself.
What you may think about it now, or ever considered before,
you wouldn't guess the dimension of it later.
So no need to turn yourself all upsidown about it,
yes, easier said then done at this moment, but ...
just wanted to let you know that you can be sure about it
and relay on that too.
Knock! Knock! Hello??? ... Heeeeeeeellloooooo ??? ...
Are you still there in the cocoon??
When you find out about how can you escape,
before you run, you ask when you can start drinking,
We'll hop in to pick you up with some couple of stuff.
Hugs.
. -
Maria,
Great post. I felt very much the same as you, and you expressed it wonderfully.
NS,
Remember, this is about you. You are not being anti-social, you are not vain, whatever do you and however you choose to handle this, you are not being selfish. This is about you. You have to do what makes you feel most comfortable. Don't worry about the rest of the world. And remember too that regardless of what the outside world might think, there are lots of us here who have felt exactly the same way as you, and who've handled it exactly the same way.
Your only responsibility is to do whatever is best for you. -
Thanks again- everyone.
maria, you are a wonderful writer- I can't thank you enough.
Today I tried to find PJs that button down the front- I couldn't find any! They all are over the head kind. In desperation I went into Victoria's Secret. I was ok- believe it or not I was looking at all the wonderbras and underwires and push up this and smooshup that and thought- I WON'T EVER have to wear one of those again! My ps told me that my new ones will stay UP naturally.
Which is a good thing since I have begun to resemble Margorie Maine.
I have a list of things to sweat out-
First are the scans I have next week... I am praying they are all clear and they can restage me as a new primary.
Second is the surgery itself and how much pain there will be since I can't take pain meds.
Third is my escape from the hospital
Fourth is how I will be able to take care of myself after.
and then fifth-
WHAT KIND OF CHEMO.... Lord help me that is like a horror show in itself.
But i am only concentrating on the first two right now.
I am very active and use my arms a lot- I am told I won't be as physically strong as I am now? Is this true?
How are single women supposed to have bilaterals and take care of themselves and their homes if they can't use their arms??
I have so many questions that pop into my mind I am not sure where my mind is going sometimes.
Thank heavens for you girls. I feel like I have a tether keeping me attached to earth or I would float away or something!!
Love,
g -
g,
I was so terrified of surgery when it was looming on my horizon. My mom had bc 25 years ago and they were yanking lymph nodes in those days like they were loose teeth. She couldn't lift her arm over her head for years, or what seemed like years. I was so afraid of diminished capacity post surgery.
Thank goodness for SNB's. I forked over one or two nodes for the test, which thankfully and miraculously showed no cancer. I was able to lift my arm over my head, and I could still wear pull over tshirts. Just one side was affected for me, and I opted for diep instead of implants, so I know our cases are different. I just want you to know that I can still yank on my lawn mower cord and get it started even in cold weather when it would rather sit idle. And I yank with my right arm, which is my affected side.
I know the risk of lymphedema is out there, but I just say a prayer asking for protection and wail on that cord anyway. You are going to be FINE. Just read something about the law of attraction. If that's not enough to scare away the dark thoughts, I'll think of some of my own. Sweet dreams dear one. -
g-
Sent you a PM. Hang in there girlfriend. We are there for you.
Deb C -
"I WON'T EVER have to wear one of those again!"
It's a great thought isn't it? Hahaha ...
I am very active and use my arms a lot-
I am told I won't be as physically strong as I am now?
Is this true?
Is not so linear neither simple as that,
you will have to keep your arms in shape
one way or the other; the more in shape you are at,
the less is the probability of problems,
in this situations things like to not move can be worst.
Your arms will have around the same strength, but
you just can not use it for heavy stuff,
and if so or when needed,
for that you take precautions.
Like my PT says, you can do it all
as long as you are very careful,
measure what you do, be attentive to yourself,
and be preventive when in doubt and just in case.
I was always very active and had some couple
of sports activities that were about arm work,
found solutions for that and today I can not do some,
more because of my back then because of my arm.
A small example;
to workout with weights, for instance ... sleeve on,
with the appropriate weights, not over do on it,
rest, sleeve off, shower and I'm good to go.
Anything or when there may be the chance of overdoing,
I use a sleeve as prevention, sleeve and other things
is not for whom has LE already, is to prevent it.
To me to bake a pizza still is more dangerous,
I'm too clumsy and keep burning myself.
My profession still gives me more problems, then my
daily life things or leisure activities.
Anyone around here on Lymphedema Concerns boards,
can give you very good advise on this,
and there's some literature around about it.
To me the biggest problem with the literature around
is that, it was created based on 20, 30 years ago,
when life style and
woman's age affected by this was very different.
We nowdays have very different life styles,
and most of our things just do not come on that reading.
Who would say for instance
that to stay for too long in front of a computer
can be bad for a person with arm problems
related with this kind of surgery with node involvement?
This and other things you will not read around.
Yet, that's the basic of our daily life today.
My advise is that after you recover from surgery,
you consult a Physical Therapist expert on this,
preferably one expert on LE
this are the best for this situations,
one willing to teach you some couple of things.
With them, one can learn better
and according to our situation,
just as also some and most of them will
give you tips on how to deal
with your implants too, massage the stretchings
how that should be done, and so on, and so on, and so on.
or if one is on expanders, or even if one just had a mastec.,
You can learn what and how you can do things
according with your specific situation,
just as also how to keep yourself in shape and
even how to massage yourself, self maintenance and so on.
To me and in my opinion it does worth always the investment,
it's a "for life thing" and
you will learn "in loco" a pile of things
according with your conditions and
that you will use for life;
and learning with a Pro. will make you feel FAR MORE safer
and will help you A LOT mainly on gaining back
your self confidence on your physical abilities.
You may think, "Oh no, not another doc. please!..."
In my opinion is always good to have the
contact of a good one for any eventuality,
then what may seem to be complicated and take long time
in around 2 or 4 sections not more then that,
you can learn what you need to know to get you going.
Right on the first you will notice what they can do
with our arms, that after surgery and during a while
most of us just do not dare. Just the way they deal with us
improves A LOT our self confidence and at the same time
we learn a lot of things, including until where we can go.
Hope everything goes well with your tests next week.
And have a good rest during the weekend.
Hugs.
. -
Gina-
Who told you that you wouldn't be as strong as you are now? Did they mean immediately after surgery or permanently? I am about 20 months post mast and 14 months post free TRAM and have no problems in that regard. My left shoulder was frozen before dx and the right one froze post TRAM (I still think it was from the Arimidex) and the only issues I have are range of motion and even that is very slight at this point.
I really worry about your post surgical care----your sister can't come? You decided not to tell your Mom?
You're right about the no bra thing. I made Marjorie Maine look downright perky pre-dx and now can go braless at 62! And do frequently---boy is that comfy! Even my (female) breast surgeon says, "those are beautiful breasts" every time I see her. I'm so pleased with the outcome that I may end up having to fight the compulsion to show them to strangers in WalMart.
Just trying to make you smile. You know I've said it all over the boards and several times, but we are all with you and behind you with loving and caring arms. This is a scarey time but all will work out in the end---you are one of the strongest women I know. And on those days when you think you aren't strong enough, draw on us.
Althea made a good suggestion about the law of attraction. Not like you have a lot of time to read right now but it is a very interesting personal dynamic.
Sending hugs and prayers and healing light your way.
Jeannie -
Gina...Oohh...a beautiful butterfly will emerge from your cocoon! Take all the time you need to complete your metamorphosis! We will treat you new delicate wings with care so that you may fly strong and free!
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Want to add my good wishes NS and hope you get the PS you want. He sounds great. Had rt mastectomy in Jan of 06 and different primary cancer found left breast in Dec. of 06 w/bi-lat late Dec. 06. Love your handle and believe in no surrender whole heartedly. It's ok now and have been driving for weeks and probably driving everyone crazy with my need to talk about it. It's so much better than I expected. Still debating about reconstruction as recon after surgery became infected and had to be removed. Rather like the freedom of being like a young girl again - flat.
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Hello everyone,
I have been hunting and gathering in preparation for this...
I bought pjs that button down the front, a few tops that zipper down the front that are baggy, and I am almost finished making my drain holder that I will wear around my waist. I even bought shoes a size larger that I can slip on without bending over- I bought them big because for some reason I always swell up after surgery.
I wanted to answer one of Maria's questions-- I have LE in my left arm from my first go around with BC. They took out all my nodes then and I am really hoping I don't wind up with LE in BOTH arms after this.
I don't know if the core biopsies shifted the tumors or what- but they feel larger and much more distinct. Before, you had to really feel closely to find them, now they are very prominent. This has made me go from being sad about losing my breasts to GET THESE THINGS OFF!! All this time is passing by and it may be spreading... I DO NOT like that idea at all.
I wanted to ask, do they put you in a compression type garment after immediate recon? Do I need to have something like that here at home?
I will be meeting with the PS a few days before the surgery- I guess I should be starting a list.
I am ok until someone starts asking me questions about this whole thing. A friend's husband was asking me what kind of chemo I would be on and if I was stage 4 yesterday and he really shook me up!
I also got a call from a long distance friend last night. We have sort of had a little romance from afar, we met once and he is really wonderful. But he lives on the other side of the country. Well, he called to tell me his company is sending him here in June. Of all times- I will probably be bald, but maybe I will have nipples! I guess this was just not meant to be!
Love,
g -
No Surrender,
I am so sorry that you are living out our fears. Just keep reminding yourself that you beat it once and you will beat it again.
Sue -
Gina,
You CAN be as strong as you were before. As someone who's gone through this twice also, I'd really recommend getting some physical therapy soon after surgery (insurance paid for 8 sessions for me). I didn't do that the first time around, when I had lumpectomy, SNB, and rads, and wound up with limitations in my range of motion and then, two years out, frozen shoulder, which was no fun. At that point, I finally made it to a physical therapist and learned how helpful PT can be. So, when I had the new primary diagnosed in my other breast and had bilateral mastectomies, I was at the physical therapist two weeks after surgery. That's rather early, but as soon as you're able, a good PT (try to find one who works with bc patients) can really keep the scar tissue from adhering and affecting your range of motion. The result--my arm on the new-cancer side has full range of motion. The other arm will never be quite there, since I waited too long, but it's better than it was. And I'm as strong as I was before!!
BTW, I didn't have recon, but I know my PT works with women with implant and tissue recon all the time, so I think what I've said applies to all of us.
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