feeling so out of control and isolated

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sherryg
New Member


Date Joined Dec 2004
Total Posts : 19
   Posted 12/30/2004 3:09 PM (GMT -7)   
Just have to vent before I break down and ball in front of my kids. I am still in the "wait" mode as far as when my surgery is. Waiting to hear from insurance and I see plastic surgeon on Monday. Cant decide on whether to do just the lumpectomy that my surgeon says would "probably" be ok or the mast that my onc recommends. Can't decide which form of reconstruction yet. Pretty much have read everything to read on each but wow what alot of info. Trying so hard to keep things "normal" here and trying to prepare my house for while i am out of commission. With 4 kids at home its rough. My 18 yr old will talk about it but she's a typical teenager and justs hopes this wont interfere with her life. I don't mean that in a bad way, its just that I was a teen when my mother was sick and I understand what she feels. My 12 yr old wont even talk to me about it. My 10 yr old is just scared and is acting out. My 5 yr old doesn't even know i am sick but i can tell he knows something is different because he's been so cuddly lately. My husband is great but bless his heart, he wont read any info I have and is so sure that this will be fine. I hope for that too but poor thing, he didn't even realize that mastectomy meant taking the entire breast until last night. I was dx on Dec.7. He thought somehow they would save the exterior of mine and my nipple and just put something underneath it. Well, thanks for letting me vent. You ladies are the only ones who know what i am feeling and I could sure use a hug.
 
Sherry

jaaustin
Veteran Member


Date Joined Jul 2003
Total Posts : 741
   Posted 12/30/2004 3:26 PM (GMT -7)   
Sherry,
We do understand. My biggest complaint about my husband was just what you say - wouldn't read anything and kept saying I was going to be "fine". I must say that I do not regret for one minute having a mastectomy. I even had delayed recon. 1 1/2 years after initial diagnosis & surgery. My daughter was only 19 months old and I didn't want the long recovery of additional surgery. Kids are very resilient, so hopefully, they will come around and you can still have some "normalcy".

Consider yourself hugged!!!
Julie
Do not go gentle into that goodnight,
Rage, rage against the dying of the light.
~Dylan Thomas


Cathi
Veteran Member


Date Joined Jul 2003
Total Posts : 702
   Posted 12/30/2004 3:32 PM (GMT -7)   
Hi...sorry things are so upsetting right now. Making these decisions
are tough..always afraid it wont be the right one. You seem well informed so I guess you need to go with your gut feeling.

I Hope that your DH will read some of the info you have...why are
they so stubborn ?

Comforting hugs

Cathi
Sometimes it is a slender thread, Sometimes a strong,
stout rope; She clings to one end, I the other;
She calls it friendship; I call it hope....


gma
Veteran Member


Date Joined Jul 2003
Total Posts : 2921
   Posted 12/30/2004 5:25 PM (GMT -7)   
Sherry you just go ahead and let it all out. This is why we are here. We understand, truly we do. Some husbands are in denial, others don't want any information because they don't want to feel the pain. Kids are kids, but you know what? When it is time they willl all be there for you with more strength than you can imagine. We will be here, too, and all of a sudden it will all fall into place and you will feel a peace about it. Trust me, I have heard too many women say they felt peace once they made a decision and times and dates were set. Wish I was closer to you, so I could help a little. My kids live in the Covington area but that isn't even close to you, is it? Just take it one step at a time and if you feel like it is getting ready to explode just come here and let er rip. We understand and will hold your hand and give you cyber hugs. Mary K.


wackygal
Veteran Member


Date Joined Jul 2003
Total Posts : 857
   Posted 12/30/2004 6:32 PM (GMT -7)   
oh Sherry, we feel your pain and anguish... the beginning of this journey is enough to paralyze you with fear, anxiety and horror. And your poor husband doesn't know what to do for you, yet probably feels guilty for thinking 'how will this affect me'? My husband tried to be SO POSITIVE that he really was in denial... you have to give him time to let it sink in, for both of you. Waiting is so tough, I had 5 weeks between dx and surgery, partly becuase my surgeon's mother died and the surgery was pushed out a week. I was at the end of my rope by the time surgery day came! Yours will come too, and make sure you cry when you need to, but just understand that somewhere inside of you there is a little seed of hope that you need to nourish too... spend some time each day telling yourself that you WILL fight this and win, and watch that seed grow. Today not so much maybe, but tomorrow or the day after.... until then, many hugs and wishes for strength and faith.
hugs
stefanie
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"It's been worth everything I've been through,
 To do what I do"

                       To Do What I Do   -Alan Jackson, 2004


Candy
Veteran Member


Date Joined Jul 2003
Total Posts : 1294
   Posted 12/30/2004 7:47 PM (GMT -7)   
Hang in there hon. All I know is that I had to make all my decisions on what was closest to being an absolute. The word "probably" or "usually" did not make me feel very good. But, I do know that my mast. was the closest to being an absolute. No room left over for any errors or return of the cancer. But, that was me. My type of cancer has a high rate of return so they made sure they got it all with the mast.

Reconstruction can always wait. If the decision is causing you lots of stress, then it is the one thing you have total control of. Just hold off making the decision.

Many (((((((((HUGS)))))))),

Candy

Many Blessings for the New Year

 

 

Life may not be the party

 we hoped for,

but while we are here we might as

well dance.
   


Tavish
Veteran Member


Date Joined Jul 2003
Total Posts : 2272
   Posted 12/30/2004 8:37 PM (GMT -7)   
Sherry, we do understand....and making the medical decisions is so hard, especially when combined with the paralyzing fear that comes with diagnosis. If onc is recommending a mast and surgeon is recommending a lumpectomy, I would definitely consider a 2nd opinion. I went through the University of Michigan for my 2nd opinion, went through the breast clinic there. I brought my slides, path reports, films, everything...and had to watch a film on surgeries, then met with the multidisciplinary team. I met with the RN, the surgeon, the onc and declined the rad onc (had it at a different facility due to proximity).

I was offered a choice on surgeries for the breast and the lymph nodes, and I got lots of opinions, mostly leaning the same way. I asked the docs if I had been their sister or daughter or wife, would they feel comfortable with the options I chose, and they said yes. Then I spent the Christmas holidays emailing with my surgeon and asking more questions to help me be sure. Most likely, there is no need to rush.

My initial diagnosis and lumpectomy was 11/30. All margins were clear except one that required a re-excision. With the holidays adding to the delay, I had my re-excision and sentinel node biopsy on 1/14....I had several weeks in between. Chemo started 2/8, so it was not a quick process.

As for the kids, do you live near a Gilda's Club or other cancer support community? or can you talk to the social worker at the hospital? They can offer some guidance and tips on what to expect and how to talk to the kids...mostly the kids will be scared for you, and scared how this will all impact them (if Mom is sick, who will take care of me?) They may also be concered if you will lose your hair or how your appearance may change...but I have never heard of a bad outcome here! Kids ARE resilient and they just need time to absorb and 'get' it. And to learn that cancer will be a chronic illness, just a bump in the road...

Hugs to you-
Lori


Cindy802
Regular Member


Date Joined Dec 2004
Total Posts : 70
   Posted 12/30/2004 8:45 PM (GMT -7)   

Hi sherry. So sorry you are having so much stress. Take a few, big, calm, deep breaths and try to clear your head. I know that things are so scary for you right now. You may not know which way to turn or what decisions to make. Seems like everything is coming at you so fast. This can make anyone have a meltdown. I know you have probably researched so much, and that is a wonderful thing...but your husband is right...they do have a mastectomy where they leave the outer skin envelope and just remove the breast tissue. It is called a skin-sparing mastectomy. Depending on where your cancer is, sometimes they will leave the nipple, too (nipple sparing procedure). A woman no longer has to have the entire breast removed, unless there are special circimstances, where it is unavoidable. Did you check out diep reconstruction? That surgery removes the skin and fat from the tummy (no muscle), and is transplanted to the breast. It leaves you a very normal looking, jiggly :-)  , perky breast. I wish you well, Sherry. Keep us updated, dear.

Cindy

PS...if you want to see some before and after photos, here is the website for the center I had mine done: www.centerforrestoration.com


Breast cancer has become an epidemic. After all of the these years and billions of dollars donated for research...WHERE IS THE CURE???
http://www.truefacesofbreastcancer.org

Post Edited (Cindy802) : 1/1/2005 9:36:09 PM (GMT-7)


coopfesta
Veteran Member


Date Joined Sep 2003
Total Posts : 1373
   Posted 12/30/2004 9:50 PM (GMT -7)   
(((((((((((((((((((sherry))))))))))))))))))))))
 
Oh, I am so there with you!  I had a lot of the same stuff to deal with, little one was hard, he knew something was seriously wrong.  My dh, well, he was almost out on his ear.  Supportive was not the word of the day.  He did not handle the cancer at all, even tried to tell me that he wasn't so sure that it really was cancer, but the doctors just trying to make money by treating me and billing the insurance.  He'd voice his suspicions a couple of times, at a prime time, when I was sick, because he couldn't handle it.  OOOHHHH was I mad.  Real validating.  I remember saying to him "Honey, I'll survive this, but I don't know if we will."  It was really rough.  From what I remember, you have a great DH, who's supportive.  I couldn't even say that much at the time.  Point is, though, it wound up being okay, I trained him, granted, but he wound up doing what I needed him to do.  Sometimes they just are clueless.  At the cancer center in NYC, (Beth Israel) there were pamphlets for husbands.  Like he would have looked at it, but maybe yours will.  I have a video for kids with bc moms to watch.  If you want it, email me. 
 
I remember this site really got me through it.  I was on every night, always posting, really got to know the ladies.  Even went to a gathering while on chemo.  It was wonderful. 
 
Please keep venting.  I pray you make a decision that your heart led you to.  An old friend said three little words to me once when I was all over the place, ten years ago, now, and I never forgot it.
 
follow your heart.
"Our greatest glory is not in never falling, but in rising every time we fall." -Confucius

Ellen


lemonz
Veteran Member


Date Joined Jul 2003
Total Posts : 1090
   Posted 12/31/2004 9:41 AM (GMT -7)   
Wow I am so glad to see all the ladies have already posted. Nothing much left to say after all this good advice. I just wanted you to know I am also thinking of you and here for you also. There is really nothing to add except once you have made your decision if you do not feel better I would then rethink it. I know once I made up my mind I felt great. Kind of like a battle plan. I was comfortable with it and ready to go to war. Hugs Joyce
People are like tea bags, you have to put them in hot water to see how  strong they are!
 
 

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