It has finally sunk in ...

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I was diagnosed with DCIS in September, has unilateral BX with immediate DIEP on Dec. 11. I had sentinal node biopsy; results negative.   I am very pleased with my reconstruction so far and happy with my PS.  I've had some pretty intense under arm and pectoral stretching and tightness throughout my abdomen.  I've been to 7 PT appointments and am gaining more and more movement back daily.  The hematoma I had that was one of the most painful things is healing.  I've returned to work part time this week and full time next week.  I have an awesome husband and support system around me. 

So, with all of these positive things around me right now, can someone tell me why all of a sudden all I want to do is cry?  My baby boy doggie Jack was lying next to me last night and rested his head on my belly and I couldn't feel his head! I got a catalog in the mail with swimsuits and actually got excited that maybe this year I can buy one without worrying about supporting my sagging boobs.  That should make me feel good, right? Nope. It made me feel that "dammit, I had to go through all of crap to finally be able to wear that cute swimsuit!" How dare it!  My PS says the feeling in my belly and around my rec breast may or may not come back and that it could take up to 6 months before I feel like my "nethers" aren't be stretched like a rubber band.  Will I ever get used to this?

When I was first diagnosed I was completely pissed off, then I was afraid and scared, then I was excited to get on with the surgery and start new.  I don't know that I really ever just cried.  I mean, cry just for crying.  I cried in pain, I cried with anger.   Last night and today at work, I just cried.  Is it that it's just finally hit me and sunk in? My friends say I am amazing and they cannot believe what I've been through and how strong I've been.  I think my strength has worn off.  I am petrified about my future now and the decision of tomoxifen (thank goodness I don't have to make that yet!).  Any words of encouragement is so appreciated!

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Comments

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited February 2010

    As women, we are very good during a crisis. And bc is certainly one of those! What we often do is allow ourselves to "let go" once the danger is past. That's what you have done and it is totally normal! Good for you to be able to begin the inner (emotional) healing process. So this is a good sign, not a bad one.

    Now buy a drop dead gorgeous bathing suit and strut your stuff. You done good! Laughing

  • hollyann
    hollyann Member Posts: 2,992
    edited February 2010

    Barbe is right......You have been through a hell of a lot in the past few months.....I remember when I was first diagnosed and had my surgeries.....I cried because of fear, anger and loss.....But I didn't cry for ME until much later......Then after the smoke had cleared and I was on the road to recovery I found myself just sitting one day and bawling my eyes out......Thank God for this site!.....I came here and found what I was going through was perfectly NORMAL!.........You too will come to a better place and feel better about everything eventually.....It took me a good 2 years to feel normal and not break down in tears every other day but then again I went through a hyst and ooph not even a year after my masts and TRAMs.......Good luck to you sweetie and come back here any time you need us......

  • robinlbe
    robinlbe Member Posts: 585
    edited February 2010

    I liken it to a roller coaster.....and even though I haven't been on it quite as long as you have, I'm not sure when (or if) we ever get off.  My guess is we never really do get off of it, but maybe the hills become more drawn out.....I'm sure we all hear how "strong" we are.  Well, what else are we supposed to do?  Crawl up in a hole, shrivel and die??  For crying out loud!!

    And you know what??  That's exactly what ya gotta do sometimes!!!  So do it...cry.  Get it out...and like Barbe said, get your new suit!!

    I didn't get reconstructed and I am dreading summer so badly...I gawk at swimsuits and wonder if I'll even have the nerve to put one on....sigh. 

    p.s.  and besides, you're still pretty new to this business, anyway....it's been less than a year, and September and December weren't THAT long ago.  For me, I was diagnosed in November, and had my BMX four weeks ago....I STILL haven't really grasped the idea that this is real....

  • beaglesmom
    beaglesmom Member Posts: 64
    edited February 2010

    Thank you all so much!  I am crying as I read this and having a big bowl of ice cream (the simple things in life you know!) ... 2009 was certainly a year to wipe off the map.  I too, Hollyann, had a hyster in Jan 2009 and then lost my mother, who battled Alzheimer's and colon cancer, in March, my father in law passed in August and then I am diagnosed with BC in Sept.  It's been quite a ride.  Robin, I've always hated roller coasters so I like your analogy :-)  I think I sense a retail therapy weekend in my weekend and is anyone else ready for spring out there!!

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited February 2010

    Robin, I strutted around a 5-star resort for my daughter's destination wedding like I had the best pair out there! I was totally flat and just got a cute tankini! You can do it...

  • badger
    badger Member Posts: 34,614
    edited February 2010

    cleoleach - what you're feeling is very normal!  Ever hear of the fight or flight instinct?  The adrenaline kicks in when the fight is on...then there's a lull and the adrenaline kind of wears off so the feelings start to surface.  There's an excellent thread in the Reconstruction forum called, "I was fine, but 6 months later I am SO SAD about my loss."  Here's the link, hope it helps!  {{hugs}}

    http://community.breastcancer.org/forum/44/topic/734772?page=6#idx_157

    And, if it makes you feel better, yes - Spring is on the way!!!

  • Nicole112
    Nicole112 Member Posts: 327
    edited February 2010

    Ironically, I came to this site tonight because I'm crying... crying, crying, crying, and I am 1 1/2 yrs out from diagnosis and over a year from treatment, but who's counting... what I find so bizarre, is I am crying MORE now than then... does this make sense...

    I went out with girlfriends tonight and they were praising me for looking so cute as my hair is starting to grow back, etc... but inside, I am ANGRY, I am sad, I am blue... and I wonder WHY? As, I am lucky, I have life, I have a second chance, I have 2 children, a husband, a career, a white picket fence... but there is something, something deep down I have been stripped of from bc.

    This is the one site I can come to and express myself, as I was sitting there hearing my girlfriends talk about life events, kids, routine, the perfect vacation... the old bubbly person I used to be is withdrawn, cautious and reserved... I am ANGRY that bc has intruded on my life and my way of thinking... I can only hope that in due time, like chemo, this time too shall pass and I will feel normal again.

    Thank you for starting this post, and sorry for "letting: it all out... it is just so necessary to let it out and vent to woman that understand!

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited February 2010

    I think what has been "stripped" from us as Nicole says, is our innocence that "it can't happen to me"; our trust in the Universe that we will be safe; we are good people - bad things won't happen; perhaps even our trust in our Faith.

    We have seen the end - and faced it. Looked death in the eye and said "not just yet, my friend!"

    That may seem overly dramatic to some, but so true to those of use who have/had cancer!

    Most people think we should have moved on, gotten over it by now. Not. We face that truth every day.

  • dianenv
    dianenv Member Posts: 241
    edited February 2010

    cleoleach I so understand your "roller coaster".  I was dianosed in November with DCIS and had my surgery with TE on December 15.  As everyone has said, fine one minute and just a sense of dread another minute.  Thank goodness for this site!  People around me do not understand.  My outcome is great, no chemo, radiation, or tamoxifen, so I should just feel happy.  I am blessed.  For such a sucky situation, it all turned out well.  However, I think all of us lose a sense of innocence.  Nothing will ever be the same again.  As I was telling my mother in a year the physical scars should be healed, I am not too sure about the emotional ones (those may take a little longer).  diane

  • Magister105
    Magister105 Member Posts: 73
    edited February 2010

    Barbe:

    Thank you for your post -- I haven't been able to put into words what the change in me is until I read this. You are exactly right and have named it perfectly. Thanks!

  • beaglesmom
    beaglesmom Member Posts: 64
    edited February 2010

    You girls are the best!  I realize now that it's not just me.  It's so hard to put into words why I want to cry.  My husband asks "what's wrong" and I can't put my finger on it.  I look at myself in the mirror and all the scars, sometimes feeling pleased with my flat belly and perky foob and then other times wanting my flabby belly and sagging boob back.  My friends say that at 44 I'll look better than some 30 year olds out there but sometimes I just don't care. Everyone says I look great and it's great to have me back, but I don't feel "back".  I feel different.  I guess I just have to find whatever the new normal is for me and embrace it. 

    Diane, sounds like you and I have had the same diagnosis, DCIS, no chemo or radiation but I am still struggling with the tomoxifen decision.  My oncologist is leaving the decision up to me.  She is awesome and said if it were her she wouldn't do it, but it's easy for her to say that not having been through what I have been through.  The risks for me are more nuisances than really risks because I don't have my uterus anymore so I'd be dealing more with the night sweats, hot flashes and mood swing possiblities. What made your decision? 

    So glad to find a group that understands each other! 

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited February 2010

    Cleo, you won't have some of those symptoms because you already went through them when you had your hysterectomy.

    Mood swings are our perogative as women...we'll never lose that! Kiss

  • sweatyspice
    sweatyspice Member Posts: 922
    edited February 2010

    I haven't cried over this yet.  A stray tear here and there but nothing more, nothing I'd consider "crying."  That scares me.  On the other hand,

    barbe1958 wrote:

    I think what has been "stripped" from us as Nicole says, is our innocence that "it can't happen to me"; our trust in the Universe that we will be safe; we are good people - bad things won't happen; perhaps even our trust in our Faith.

    We have seen the end - and faced it. Looked death in the eye and said "not just yet, my friend!"

    That may seem overly dramatic to some, but so true to those of use who have/had cancer!

    Most people think we should have moved on, gotten over it by now. Not. We face that truth every day.

    _____

    I've been there, done that several times before, through different kinds of life & death crises.   I fear the emotional toll it's all taken, and sometimes think all that stress is what caused the BC.... 

    I can totally relate to the "I should be pleased with my new perky breasts but I want my saggy old ones back - whose body is this?  Mine or my plastic surgeon's?" kind of feeling.  Very Talking Heads.

  • dlb823
    dlb823 Member Posts: 9,430
    edited February 2010

    cleoleach ~ Unfortunately, no one tells us that being done with treatment does not immediately equal "the end" of what we've been through.  Physical and emotional healing just takes longer than we're led to believe, because, as Barbe and others have pointed out, we tend to suppress a lot of our feelings to get through what has to be done.  And you are still so close to all you've been through and are still going through.  Personally, I found that getting my Stage II Diep surgery behind me was a huge step towards getting back to feeling more "normal," and recently having my nipple done was another.  

    I'm now 2 years out from my initial dx and about 18 months from my mast & Diep, and I can honestly tell you that it's MUCH MUCH better now.  One thing I've found helpful and I highly recommend is walking.  I walk outdoors for about an hour each a.m., and it's made an incredible difference in both my physical and emotional strength.  

    So, hang in there... cry all you need to now... get it all out... give yourself time to grieve and get used to the unexpected changes in your body and life, but know that you will feel entirely different a year from now.   Deanna

  • dianenv
    dianenv Member Posts: 241
    edited February 2010

    cleoleach

    My oncologistdid not recomend it for me.  I have already passed menopause, I finished at 45, and I did not test positive for the cancer  gene. I do not have the night sweats anymore, thank goodness, just sometimes the lack of sleep.  Good luck with your decision. I am off to Tahoe tonight.  diane 

  • spar2
    spar2 Member Posts: 6,827
    edited February 2010

    Barbe did express it so well, losing that "it can't happen to me"  put me in the anything can happen at any time mode.  I didn't like it in 2004 and don't like it any better in 2010  The rubber band effect does get better but mine has never gone completely away.  Wishing you the very best and to hang on when the roller coaster gets too much.  Hugs sherry

  • tamgam
    tamgam Member Posts: 255
    edited February 2010

    Barbe,

    You hit the nail on the head with your insight.  The safety net we always thought we had has been pulled out from under us never to be fully present again.  It seems so surreal, this bc journey.  It helps so much to hear other women;s perspectives. We can all relate to these crazy waves of emotions that others want 2 understand but simply can not.

  • beaglesmom
    beaglesmom Member Posts: 64
    edited February 2010

    I had to laugh at the comment Sweatyspace says "is my body my plastic surgeons?".  When I was there on Tuesday, he looked at my breast and said he likes the shape and then realized to ask me what I thought ... ME, remember ME, the one who has to live with this.  Don't get me wrong, I love him and he's really been great, but I kind of feel more like a number now.  I am not the patient with cancer with drains and feeling like s**t, barely able to walk anymore.  Now, I am just another routine patient waiting for my stage II diep.  I agree Deanna, I cannot wait for stage II thinking that may be the step toward more normalcy for me and thank you for your advice about walking.  I put my YMCA membership on hold until March 1 and was thinking about trying to get it reinstated earlier.  I found myself walking the malls while I was recovering to get some exercise (our weather has been horrible) and need to get back to the Y and walk the track.  You've encouraged me to do just that. How long is the recovery with stage II? I am hoping only about 1-2 weeks.  I can't stand being home again for any great length of time.  :-)

    Nicole, girl, let it out!!!  I realize now that it's okay to. Somewhere out there, we all have someone who knows exactly how we all feel.  We should all try to find comfort in that.

    Margaret

  • Ezscriiibe
    Ezscriiibe Member Posts: 598
    edited February 2010

    This: - - - > "We have seen the end - and faced it. Looked death in the eye and said "not just yet, my friend!""

    I haven't even started chemo yet (on 2/18), but today I found myself completely melting down over the littlest things, a song on the radio (Rod Stewart's "Sailing"). Then during a presentation to some homeshool kids regarding Project Linus (I'm our city's local chapter coordinator). I choked up in the presentation, but held it off until I got in the car and just utterly collapsed. And I could tell you right now there was absolutely NO thoughts going through my head, just this immense sadness.

    This is so not me and it also makes me angry that cancer has done this to me.

    Just need to rant that. Thanks.

  • Nicole112
    Nicole112 Member Posts: 327
    edited February 2010

    Ezxcriibe-

    I am glad you have found this website prior to going through treatments as you will find these "rooms" will give you comfort... I did not know about these boards until after treatment, would have helped a lot to have known during the treatments.

    I hear what you are saying, about this not being "you"... I used to be "happy go lucky, always laughing, always joking"... and I have to say, cancer has changed me... but I did use humor to get through a lot of it... one particular moment I recall is when I was with my daughter in Target on a hot summer day and I had my wig on, she dared me to take it off in line and fan myself with it saying, Whew is anyone else hot in here?" If we would have had a camera we would have won some money from expressions on faces of customers. (Americ's Funniest Videos!)

    Humor helps through all of this... but I will say, kleenex is a necessity through the whole process... and one last thing people are not so aware of, just what a "process" the whole cancer thing is.. I am 18 months out and going to see a plastic surgeon soon to complete my reconstruction... fingers crossed it is smooth sailing...

    So Ezscriibe, I guess what I am saying is, you have every right to be angry and you are not alone in this... so many of us have traveled in your shoes... lean on us when you are in need, have any questions, or just need to "vent"

    I will be thinking of you in the coming months as you go through treatments. BTW- I will share, chemo is manageable, you got this, just baby step through it!

  • cs34
    cs34 Member Posts: 253
    edited February 2010

    So glad I found this. I'm sitting at my desk (at work) bawling my eyes out. The tears just won't stop and it just feels like they never will...(but I know they will soon.)

    Over? Finished? Ya...with the DMX, latt flap, lymph node removal, chemo & radiation but the emotional part and mourning who I used to be has just begun. It may sound dramatic but that's how I feel.

    I just hate looking in the mirror. My eyelashes are falling out again (Taxol) and my eyebrows are starting to thin. My hair is coming in salt and pepper and I'm 60 pounds over weight. I got on the tread mill the other day and hit the interval training and it was on run for 30 seconds. Because I can't do what I used and I feel so old, tired and weak, I ran for the 30 seconds. It felt SO unbelievably horrible inside. The tightness, the vice grip, the heaviness of the tissue expanders. I started to cry on the tread mill but wouldn't get off. Radiation was done Dec 17th so I'm still feeling tightness and I was in such pain after the tread mill. I haven't been on it again and have no desire to feel that tightness & heaviness again.

    I just feel like any stress in my life sends me into a tail spin of feeling overwhelmed. My friend is a Trauma therapist and she assured me this is normal and may last about six months so that does make me feel better and OF COURSE coming here and reading what everyone has written also let's me know I'm not alone.

    As I read through the posts, the tears stopped because I'm like, "ok. This isn't just me and I will just have to let the feeling be what they are."

    I also bought the book the moderators wrote, "Living Well Beyond Breast Cancer" and they do talk about finding your "new normal" life. But goodness it feels like I will never feel "normal" again with all of my scars, no boobs and knowing the thought of doing this all over again is always knocking on the back door and could happen at any moment.

    I'm also questioning my fiance right now about walking down the aisle because I just want to be ALONE and not have ANY stress in my life. He's wonderful and supportive (but of course he drives me crazy and we have our issues) but i just don't want issues right now. I don't want to have to deal with the day to day NORMAL struggles of life while all of these horrible feelings are running around in my heart and mind. It almost just seems like it's too much for one to take. And then add on that people just assume the minute you walk out of your last treatment center that you are done...you are finished...you're cured and all is well!!! How do you explain these overwhelming feelings to these people to make them understand why you're crying your eyes out continuously? I know unless you walked the walk, no one can really understand what we've been through but can't everyone just stop trying to tell me I'm ok?

    Goodness, I went on and on but that is the "rawest" I've ever been on these boards.
    Thank you all for listening!!!!

  • Makratz
    Makratz Member Posts: 12,678
    edited February 2010

    CS34 ((((((((((((((((HUGS)))))))))))))))))))

  • cs34
    cs34 Member Posts: 253
    edited February 2010

    SEE?????? you sending me hugs made me cry!!! Smile Really, it did.

    Thank you very much!

    I know this is a process we all have to go through and each one of us will do it in our own time so I can't rush things but I hate this crying all the time...

    One day at a time!

  • EWB
    EWB Member Posts: 2,927
    edited February 2010

    Barbe - as always you have a way with words, a calming "something" - a true gift.

    Lucy - I think you made a good point about a lot of crying but it was a while before crying "for me". We forget that part sometimes. And we forget that its OK, and even necessary, healing to do so.

    One day at a time, remember to breathe ....

  • robinlbe
    robinlbe Member Posts: 585
    edited February 2010

    So, maybe that's why I'm in my crying moods and "can't get up and going" mode the last three days?  I was diagnosed in November...had two surgeries, then the BMX Jan 6, 2010.  I don't have to have chemo or rads, nothing. Not even tamox.  I'm done.  I will have a follow- up with onc., and some genetic counseling, possibly testing, but that's it.  My head KNOWS I should be grateful and needs to go forward....I know I need to be thankful for what I have left. 

    I can hardly utter a word without crying.  I hate my body.  I hate being flat.  I hate the bumper pads.  I hate the prosthetics that I don't even have yet.  I hate the idea of implants and I hate the idea of reconstruction.  I hate the idea of more surgery.  I just want "me" back.  I hate all of this. 

    My school system is screwing me out of some of my sick days, and I'm having to fight some of that.  I'm so tired of fighting that, too.  I haven't even been able to really rest even after surgery, as I've been expected to write lesson plans and communicate each week with my three schools.  Then, when they finally got a regular sub for me, I've had to stay in constant communication with her. 

    I'm tired of trying to stay strong.  I'm tired of being positive, of being cheerful.  Actually, I truly was postive and cheerful and upbeat for awhile.  I"m not now.  But now is when I SHOULD be.  Why am I not????

     I'm 5 weeks post surgery.  My range of motion is almost all back.  I can drive again.  I can do almost everything I want to do.  So why do I feel like crying all the time?  Why am I such a wreck?  (I know there are really no answers....just venting I guess....but grateful you're there to read, or at least I can post this and maybe try to feel a little better...)

    blessings...robin

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited February 2010

    Robin, as women we are wonderful during a crisis; stepping up to the plate; lifting cars off our young. But, when it's all over, it's our time to "fall apart", to cry, to rant, to rave, to grieve. You have to give your soul a chance to grieve for the loss of your breast - your health. You are dealing with it beautifully by wording your feelings in your post.

    Someone late one night said something special that helped me when I felt like you do:

    Let God take the helm.

  • neversurrender
    neversurrender Member Posts: 508
    edited February 2010

    Robin, you received your diagnosis, had your surgeries and are now "on the other side" - and all in a very short time. You are feeling better physically and are able to do most of your normal routine again.  I think it is normal to now fall apart...the crisis is over, your brain is no longer in survival mode.  Now it is done,  you are left to face your new reality.

    I will liken this to a situation I was in a few years ago.  My family goes on an annual camping trip with several other families.  On our last day, all of the kids were playing ball while the adults were packing up gear and putting away the tents.  I was just coming from my tent and heard an odd cry behind me.  When I turned, one of the little boys in our group (4yrs old), was lying, propped on his forearms and legs over a fire ring.  We had used the fire ring for breakfast that day, and it was still burning and full of embers.  I ran to him, swung him up out of the fire, screamed to get water, and had him stripped of his smoking clothes all in a matter of seconds.  Everyone else jumped into action and we had him doused in water and were tending to him while waiting for the EMS.  I remember being squatted beside him the whole time carrying on inane conversations about Spiderman while trying to distract him from his burning skin.  The EMS arrived, got him stable and took off.  Five minutes after the ambulance left, I was hyperventilating and in tears -- but not a single tear the whole time I was in action.  Your brain focuses on surviving, once that adrenalin is gone - the reality of the situation hits.  I had nightmares about the look on his face for a long time, but eventually they stopped.  Give yourself time to grieve.  Give yourself time to cry.  You did not ask to have your life turned upside down.  You did not ask to have your breasts amputated.  You have every right to feel pissed off and sad and angry.  Allow yourself to have this time, it will eventually pass, and you will be able to move forward. 

    Never Surrender!    

  • beaglesmom
    beaglesmom Member Posts: 64
    edited February 2010

    Never Surrender!!  Amen!!  You could not have said that any better.  I started this thread almost 2 weeks ago and can honestly say that it is getting better.  I have days that I just want to scream and when I look at myself in the mirror, I wonder who that person is.  But, as I am trying my damndest to get back into my life and routine, I find that I am the strong person everyone says I am.  Robin -- hang in there sister! 

    Now never surrender - how is the little boy now?  I teared up reading your story and hope there was a happy ending.

    Margaret

  • Suzanne3131
    Suzanne3131 Member Posts: 3,953
    edited February 2010

    Yesterday I was cleaning the house...I had great music on my ipod and was happily vacuuming and dancing, feeling very happy.  I started to notice that I was feeling grateful for having the energy to feel that good while working so hard, and feeling like I had come so far since July.  Suddenly, it was like the reality of the fact that I had cancer hit me like a wrecking ball!  Like I had never truly acknowledged that.  It was a crazy sudden sensation of something like panic.  Maybe I have not really let my guard down until that moment?  Anyway, on this thread I feel like I am in good company, and I think maybe I should have a good cry one of these days!  :-)  

  • neversurrender
    neversurrender Member Posts: 508
    edited February 2010

    Margaret,

    The little boy if fine now.  He is 9 yrs old. The burns on his legs and side and left hand healed easily.  He had used his right forearm to hold up most of his weight over the fire.  He had to have 3 surgeries on his right forearm/wrist/palm area, but the scars are now barely noticable.  The doctors said he was literally within 10 seconds of losing his arm (10seconds more on the ring). He does not even remember the incident.  He knows he got burned once, but he is only "retelling" the story, he has no real memory of it.  Kids are amazing creatures, his skin and mind have healed much more quickly and completely than us poor adults :)  

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