2010 Sisters

12122242627157

Comments

  • barbaraa
    barbaraa Member Posts: 3,548

    Jag, Cathy, Amyjo and Max -  I relate to meltdowns. I am in controlled meltdown mode. I have a high-powered, high visibility job that got put on hold for three months because of BC. Now I am back in it and am really struggling. I called ACS and got a referral to a BC therapist (call came Fri so have to call tomorrow then wait for appt. Wonder when that will be.). I feel like I am having PTSD big time. I can't take anti-anxiety meds well, as I do not metabolize them and end up in la-la land for days then in an OD state after a week or so. Hoping the therapist can help because I'm a gonna blow here pretty soon.

    Need the job. (Insurance, $$. DUH!) DH is wonderful but is a working musician. Minimum wage so no financial help there but I don't care because he's great. Meanwhile the financial life goes on.

    I dream BC EVERY night. Woke up last night in a total cold sweat (similar to a hot flash) with the bedsheets soaked. This was after a dream where I had a BC recurrance. At least I know the DIM is working.

    Man oh man, I need a shrink bad or I'm gonna crack and soon.

    Sorry for the vent but I just want ONE night of no BC dreams or even dreamless sleep so I can get back on track.

    I'm gonna go take a long bath and cry. Thanks for listening.

  • Lady_Madonna
    Lady_Madonna Member Posts: 313

    Oh Barbara, so sorry!!!  Take it easy.  Hopefully you'll get help soon.  We all need support. 

    Glad we can be here for you until you can get those appointments.

    (((((HUGS)))))

  • lago
    lago Member Posts: 11,653

    Get this I dream of sleeping on my chest with my arms above my head. Can't wait to be able to do that again.

    The only bad dream I had is I went to see my oncologist and she said that I wasn't going to get chemo/Herceptin because the test said I wouldn't benefit from it. Yeah I was actually upset in the dream thinking… but I'm HER2+ No chemo/Herceptin is like a death sentence for someone like me. Of course Tuesday I do get to meet her. I'm sure she'll tell me they are going aggressive and doing it all. 

  • Elisimo
    Elisimo Member Posts: 1,262

    BarbaraA - So sorry you are having such a hard time.  Hope the BC therapist can find just the right solution for you.  Don't be afraid or ashamed of melt downs or blow ups especially with us.  We are all here supporting each other through the good, bad and the ugly.  Praying you have a peaceful night and can get the needed rest with no BC dreams.  Take care of yourself and know we are always here.

    Joy and blessings, 

    Amy Jo 

  • LadyinBama
    LadyinBama Member Posts: 993
    Jag: I'm one of the people with few side effects and I post! I come here for information and understanding. I've had just one chemo, my second one is Tuesday, but the first one was so much better than I expected. I got through diagnosis, tests and surgery fine, but I was having a come-apart about chemo too. It's the fear of the unknown and we hear/read so much about what COULD happen. It does not mean it WILL happen. You can do it!
  • DesignerMom
    DesignerMom Member Posts: 730

    Oh the fear and stress that we all have to face!  I think Amyjo's strategy is the best!  I want to go out and smash old chiina against a wall.  Maybe we should all have a "smash china for the cause" event!  Then we could take all the broken pieces and make a fabulous mosaic like that incredible artist in Barcelona.  It sure would feel good to smash something!

    Thanks to everyone for remembering NYC and 9/11.  It's still very close to the surface for me.  I will never, EVER forget!

  • TMarina
    TMarina Member Posts: 297

    mac5-->about the hair--I also have low self-esteem--never thought I was very pretty.  I didn't want to sweat or get caught in the rain, because my hair would go flat and I would look bad.  I have to say, having no hair is sort of freeing (altho I would prefer to still have it!).  Since I had no choice in the matter, I'm trying to be a little more "colorful"  than my old "safe" self, and buying lots of scarves.  (I really hate the wigs I got!)  Before my hair started falling out I got a short haircut--something I had been wanting, but had been too afraid to get.  It turned out it was really cute and everyone liked it!  I don't look as bad in scarves as I thought I would, (I say I look like an old Ukranian woman!) and have actually gained self-confidence through this.  As soon as my hair grows back a little I will confidently throw off the scarves, and sport my new spiky 'do!

    I did take me awhile to get to this point.  My first thought when I found out the cancer had spread to my nodes was "now I have to lose my hair".  But I eventually realized I had no control over it, and it would only be temporary, so I may as well have a little fun with it!  I think my daughters (I have 3!) were relieved that I could laugh about it, and of course its ok to make fun of mom!  I just cried one night, when I was really feeling bad from chemo, and I looked in the mirror and it all hit me.  It was just too much at that moment.  But now I hardly think about it--I'm really used to the scarves.

    Barbara--> I'm so glad you are going to see a therapist.  I know many women who have done that during cancer tx, and some even after they are done with tx.  I encourage anyone to do that, esp. if you feel you don't have anyone to talk to (in person).

    Take care all!  Hope it's a good week!

  • worldwatcher
    worldwatcher Member Posts: 46

    Thanks for the support, Lady Madonna

    For some of us, when you are past seventy with other risks you may be dead set against taking on not only the risk of chemo, but dead set against paying the price in advance for something that may not be worth the coin.

    If Herceptin is such a wonder drug (from posts I have seen on this forum it appears to be 100% effective, as the cancer cell  Terminator that hunts down all cancer cells and obliberates them) you would think that every effort would be made to make it available to every Her2+ woman in every manner. As it is, as nearly as I can tell its effectiveness depends on the addition of other drugs that can be extremely toxic.  There MUST be a reason that stand-alone therapy is not made available until, as someone said, stage IV. 

    I have done what I personally feel worth doing to avoid recurrence, but also fully understand that IF I should live many more months until that time,  my expected life span is NOT that of  a fifty-year-old. Rebellious? Perhaps. I have always know that there s a "different drummer" out there marking the beat.

  • jag82569
    jag82569 Member Posts: 84

    Once again I'm amazed at all the support.  Thank God for you girls!!!!! 

    I had 2nd thoughts all weekend about getting the port and chemo.  I made the mistake of going on Google images to look at what the port/scar might look like.  I'm thin and I have lost 12 pounds in the past 2 months from lack of sleep and anxiety - I'm afraid the port is just going to stick out.  I still can't get over losing my hair. I know it's short term....and I know it's stupid to think my hair over my life!  I just wish they could tell me that treatment is 100%  I wish I could do just the Herceptin, rads, and hormone treatment.

    Trying to work up the courage for Tuesday's port surgery.

    I want to thank all of you for your love and support.  My husband and I are just "living" together and I don't have much support.  My mom lives near by, but it's hard for me to tell her everything, I don't want her to worry more than she is. 

    I have to continue to work through chemo, my husband lost his job a couple of years ago (only working part time right now) I have a great job and I hold the health insurance and where would I be without it!  Something else that scares me - can't be without my job!  Not sure how I will do it.

    Thank you again, you are all always on my mind and in my prayers.  Peace and grace to all! 

  • worldwatcher
    worldwatcher Member Posts: 46

    Jag, my prayers are with you and your family.  I wish things could be easier for you. I'm sure you will find the strength you need as you take it one step at a time.

  • tryn2staycalm
    tryn2staycalm Member Posts: 470

    Lady Madonna - The picc line goes in your inner arm (in a good vein) just above the elbow, at least mine does.  It feeds up and around the shoulder into the chest to the vena cava.  It does show if  your sleeves don't come down to the elbow but like no one would notice that when they are starring at the bald head! lol.. I'm going to cover that too.  Actually now that its healing up its not that big of a deal.  Yes its needed to save the veins so I'm stuck with it till the new year.  I guess that will be my late Christmas gift.. No more chemo and no more picc line. (a week late if everything goes the way its planned). 

    Our Dear Barbara A -  Your so sweet and supportive and you now are the one suffering.  There must be some help out there for you.  I also dream of BC often but not every night.  It is such a big part of our lives right now and its overwhelming more than anyone can imagine until they have gone through it themselves.  Our lives are threatened by this terrible disease and it can scare us silly.  No wonder we dream of it.  We will give it a fight and as Grannydukes said we will kick BC in the arse.  What your feeling is so justified yet so extreme and I wish I could just tell you something to make it all well again.  If I could I would my sister.  Take care and god bless. Wishing you the best.  We really care.

    Cathy

  • mac5
    mac5 Member Posts: 85

    jag--

    Sister Dear.....let me speak plainly to you, I am on my second Chemo treatment of Abraxane.  You can do what you have to do.  The SE's are manageable.  You can work if you have to.  There are medications available to you to help you with the SE's.  You can do this.  Do not let the Disease rob you of the life you have left to live.

    Do not let your fears defeat you.  Don't let your anxiety and fear of the unknown rob you of your chance to beat the Disease.  Please give it your best shot.  

    We are all terrified.  Just remember.  You don't have to be brave.....just show up.

    When you are going through hell what was it Churchill said.....KEEP GOING!  

  • jag82569
    jag82569 Member Posts: 84

    mac5- THANK YOU!  Going to try to sleep tonight and dream positive......

  • LilyLou
    LilyLou Member Posts: 56

    If I had been told a year ago what my immediate future was to be, I don't know how I would have reacted.  I had always said I would never have chemo, no matter what.  But you know what?  When faced with the reality of letting a disease take over and WIN or spend a relatively short period of time with flu-like symptoms and live without hair for a few months, there was no question of what my choice had to be.  Everyone has different SE and the key is being prepared for any one of them that might occur.  Doctors are not going to prescribe for every one of the possibilities but be ready to call for help if you need it.  I was prescribed Emend, a strong anti nausea, ahead of time and also had an Rx for additional nausea control if needed.  They worked well.  What I didn't plan on was pain and later learned this was caused by the Nulasta shot.  I had nothing but Tylenol to help with that but for the 2nd chemo I was ready with stronger meds for those couple days that pain was an issue.  One of the most important things you HAVE to do is hydrate - drink lots and lots of water - it will make you feel better and I always felt I was washing the chemo out. Cathy, lago, Jag... will be thinking of you this week.  

  • mareruss4
    mareruss4 Member Posts: 5

    Hi everyone,

    Well got pet scan tomorrow and first chemo thrusday up early like usual because can't sleep. The house is quite because everyone is slepping and sitting here getting mad because im think back to a couple of years ago when I was on my 3rd biopsy and they thought it was cancer I ask my Dr. to go ahead and remove both breast because cancer ran in the family and I was tried of being stress from my yearly check ups. But Dr and DH talk me out of it said there was know need to do that. Well if they would of did what I wanted I wouldn't be going through this now. I guess I just need someone to blame. My DH has been good through all of this but in the back of my mind i'm mad at him because he did listen to me back then. 

  • tryn2staycalm
    tryn2staycalm Member Posts: 470

    mareruss4 - I know we tend to look back and say "IF" this or that.  Unfortunately we are "HERE" today and must deal with what we have ahead of us.  I'm sure your doctor and husband thought it was best for you at the time and when we get scared we can tend to do the extreme.  If you and you husband have a good relationship you do need to embrace that now as your going to need him and his support.  The only one you will be hurting by being mad at him is yourself.  I can't imagine going this alone.  My significant other has taken me to EVERY  appointment and been there with a listening ear and a shoulder to cry on.  He told me exactly what I needed to hear - that he will still love me with 2 boobs, 1 boob, or no boobs and he will still love me with or without hair, that it is still me and that is who he loves and he just wants me here anyway I am. Without that stability in my relationship I would be very scared and lonely.  I would think if and any other lady can really connect with your spouse now it is going to be a real bonus to your mind and soul and body.  This is just my thinking but it can't hurt to get more love.  Best of luck to you and I hope you find some peace.

    Sister Cathy

  • lago
    lago Member Posts: 11,653

    It's tough when looking at the what ifs. I don't even want to get started with all the screws in the last 4 years that could have put me in a stage 1 or even 0. I remember I too wanted to remove both when this all started this summer but the surgeon felt it was unneccisary… well until we did the MRI.

    It's really hard to make those decisions. Believe it or not surgeons don't like to remove healthy tissue. They don't like to leave women without breasts. It's really so hard to predict. So many women have just one breast removed and live a full life without another incident.

    I don't know where I'd be without my DH. He's been amazing. Damn he even tried to seduce me the day after I got home from the hospital. I needed a little more time to  heal though but it was so wonderful that he hasn't been effected by this. He was a butt man anyway ;D

  • Good Monday morning, ladies!

    Well I was off the board most of the weekend with lots of family activities.  Now today is jammie day.

    I only skimmed through  everything from the last couple of days, but did notice a few mentions for BarbaraA.  Gosh, girl, I'm sorry you are having such stress and anxiety.  I can relate to your working situation - I'm the sole breadwinner too, my DH is a struggling writer, and our finances are in the tank with this economy.  But I wouldn't trade him for money.  I'm extremely grateful I have short-term disability coverage so I've been off work since July 2nd and scheduled to go back in November, but hopefully part-time at first and on part-time long-term disability during rads.  Anyway enough about me.    Let us know how it's going with getting set up with a therapist.  Talk therapy can be very helpful, and hopefully they can find some kind of med to help you sleep peacefully.  I took an Ativan for the first time a few nights ago, and boy I slept like a rock.

    I'll try to get caught  up . . . . 

  • FireKracker
    FireKracker Member Posts: 5,858

    i too am tryin to catch up

    barbaraaaaa cancerland.does suk.period.

    Designer mom-thanks for your kind words.I TOO WILL SUFFER FOR THE REST OF MY LIFE FROM SEPT.11TH. I WAS THERE.

    Amyjo--its nice to hear you have a DH.

    Worldwatcher-im with you on the chemo.100%.i told all my drs.i want quality not quantity.im 69 yrs.old.my body had enuf.

    who ever i forgot know you are always on my mind and in my prayers.GOD bless

    hugggggggggggggggs

    K

  • omaz
    omaz Member Posts: 4,218
    Hugs to you Grannydukes!
  • Elisimo
    Elisimo Member Posts: 1,262

    Well back from the BS and the paths from the surgery were not good.  So what was I expecting? All I ever get is more bad news.  Basically they are going to treat this more aggressively and treatments will be longer and start sooner.  I go see the onco tomorrow afternoon instead of waiting until the 22nd.

    Basically there were no clear margins in either breast and node on right were 4/5 and on the left was 1/1, but that one was huge and matted together into a solid hard mass.  My case is still has them in disbelief that none of this has every showed up on any test or procedure I had before this past July and yet I have evidently had this for who knows how many years.  

    I am trying to keep it together for my DH at least until we go to bed tonight.  I don't have any more dishes ready to be smashed so I may just throw rocks in the pond instead.  I'll let you all know if that works as well.

    Joy and blessings

    Amy Jo 

  • Adey
    Adey Member Posts: 2,413

    Hugs and prayers AmyJo.

  • barbaraa
    barbaraa Member Posts: 3,548

    Oh AmyJo, I wish I could come over and heave rocks into the pond with you. My biggest ((HUGS))) coming out to you. Cancer SUCKS!!!

    Mareruss, MrsNice and Cathy - Having a supportive DH is so wonderful. I feel so sad for sisters with less than or even NON supportive DH's.

    On the shrink front, called ACS (as I told you) they gave me the name of a doc. I Googled this AM and her website (she's in NY-wouldn't help me any) is all about her book. So didn't bother to call to be told to buy a book. I want to look 'em in the eye. Called my onc. They called back and said they had a shrink on staff in the onc practice and the secretary would call me back. This is at 10AM. It is now 5. Good thing I am not suicidal.

    All my sistas, you have lifted me up and supported me and I sooo appreciate it. YOU understand and no one else I know does. Regarding an anti-depressant, I had a genomic test done and in addition to pain killers flooring me, anti-depressants have to be administered at 1/4 to 1/8 dose because I don't metabolize them either. There may be one out there but I haven't found it yet.

    Thanks again. The dirty martini did wonders putting me to sleep but tonight I am trying the melatonin. The health food store ordered SAMe for me. In tomorrow.

    Thanks for caring.

  • FireKracker
    FireKracker Member Posts: 5,858

    Amyjo....know that we as your sistas are prayin for you.

    hey girls come on.THIS CALLS FOR A GROUP HUGGGGGGGGGGGGGGGGGGG

    luv ya

    K

  • TMarina
    TMarina Member Posts: 297

    Sending extra prayers your way AmyJo, and joining in that group hug!   Barabara--hope you get that call soon!  Hang in there girl!

    Tina

  • LadyinBama
    LadyinBama Member Posts: 993

    AmyJo and Barbara: ((((((HUGS))))) and prayers.

  • jag82569
    jag82569 Member Posts: 84

    AmyJo- Prayers and thoughts are with you...I will smash extra dishes for you tonight!

  • DesignerMom
    DesignerMom Member Posts: 730
    amyjo- I don't have words.  Do you want me to send you a box of dishes? I could keep you supplied for a looooooong time.  I have a feeling you are going to need them. I know you and everyone must be devastated by all the bad news.  Just know this. MIRACLES HAPPEN EVERY DAY!  I used to be a nurse and have seen it first hand.  Patients who had horrible diagnosis and recovered completely.  I have a friend whos husband has/had stomach cancer so badly that even Sloan Kettering said there was nothing more they could do for him.  He's been going to Sloan for his checkups now for about 5 years and they just scratch their head in disbelief.  Prayers going up for you every day.
  • samsue
    samsue Member Posts: 599

    Jag, Amyjo, Barbara and all the wonderful sisters,

    My supervisor worked thru her BC and wore hats and scarves to work. That was 10 yrs ago... so there is hope. She looks back at it now and is really amazed at her own courage. That's what it will be for us too. We'll look back and see just how strong a woman we actually are.

    Sometimes I'd like to throw dishes too, but the neighbors live so close, they'd probably have me carted off.... Instead I come here read your posts and feel blessed that I have someone to talk to.

     (((( hugs ))) to all.

  • JenC
    JenC Member Posts: 186

    Amyjo - Big huge hugs and prayers to you.  We are all hear for you no matter what.  Please keep us posted. 

    Grannydukes - the group hug thing is a great idea:) (((((HHHUUUUGGGSSSS))))