What the heck???

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  • nowheregirl
    nowheregirl Member Posts: 894
    edited June 2006
    Carrie, I do know what you mean but sorry I just don't seem to be able to think that way. I've learned that it doesn't always mean you'll be heard just because you voice what you have to say out loud. My life has been too tough to expect much in the future or from other people.

    Maybe I'm just too tired from all the incidents here along with the fact that I've got LE and that I'll have to start 35 sessions of radiation treatment in a couple of weeks. *sigh*
  • csp
    csp Member Posts: 2,765
    edited June 2006
    You don't have to say sorry to me Fumi.
    I'm sorry you feel so down, I wish I had words.

    But know I care about you ~
    Carrie
  • nowheregirl
    nowheregirl Member Posts: 894
    edited June 2006
    Carrie,

    The same time last year, I didn't know I was going to be this ugly. I have never been good-looking in my entire life but certainly never been as gross as I am now.
    I have gained more than 30 lbs ever since I started Taxol before surgery (although it's not Taxol, it's the steroid called Decadron that caused weight gain). I have absolutely no hair on my head as I had to shave it off just a couple of days ago since it started falling out like crazy. My right arm is swollen as I've got this damn LE and my legs are swollen too because of Taxol. Now I have to wear 5 sizes larger shoes than I normaly wore. I've got nasy rashes all over my body as I sweat so much because of the weight gain and hot flashes. Imagine a too fat woman having no hair on her head with swollen arm and legs (I'd say my entire body looks swollen) having her entire body full of rashes. It's nothing but gross but sadly that's me.
  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2006
    Fumi: The body changes are temporary ... you are such a beautiful person inside ... and by the way - I think you are beautiful on the outside too... (from the photo you included in the tribute to Diane).

    Hang in there .... focus on fighting the beast and keeping your inner beauty alive. You sound soooo down and depressed. Maybe you can get something to help with that ?

    I wish I could give you a real big bear hug ... this cyber hug will have to do ... ((((((Fumi))))))

    Doreen
  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2006
  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2006
    Fumi honey, the others are right, you are a beautiful person. There is absolutely no question about that.

    But I'll echo your sentiments with you. Because I know exactly, exactly what you mean. My goofy hair is coming in and I've gained that stupid horrible weight from the decadron and I saw a picture someone took of me with my 14 year old son the other night at his graduation and I thought to myself "you are so ugly, not to mention goofy looking." And I wanted a full head of proper hair, and I want those horrible pounds off and I want my feet to stop being swollen (I finished taxol in Jan. and they are still swelling from time to time in the heat) and I want to look like I used to look!!!!

    And I never will. And I won't look like this forever. And I know I'm going to look really, really, more beautiful than I did before bc ~ because my soul is also beautiful now and it shines through my eyes. Look at your eyes Fumi and see if you can see where your new beauty is going to come from.

    In the meantime...I hear you loud and clear. And if you think you look ugly, you do. Because it's what you're seeing in the middle of all this mess. And mostly you want the mess gone and the old Fumi back.

    And cancer is stupid and it sucks and it's the most rotten thing you've ever had to endure.

    And when you feel like you can start to see your beauty and you want to tell us about that, you know we want to hear. And for now? If you want to tell us that you look like a smashed up Cabbage Patch Doll, you can do that too.

    Beauty really is in the eye of the beholder. You just aren't yet ready to behold. But you will.

    (((((((((((((((((really gentle hug))))))))))))))))))
  • Isabella4
    Isabella4 Member Posts: 2,166
    edited June 2010
  • Sandra1957
    Sandra1957 Member Posts: 1,701
    edited June 2006
    Ah, Fumi. I'm so sad that you feel so down. I actually looked back at that amazing video tribute to Diane, just to see what your picture looked like. How can you say that you've never been beautiful? You are gorgeous. My goodness, I think that you are being too hard on yourself. I'm sure that you probably look a bit different now, than you do in your photo, but it is temporary. You are probably focusing on the worst. Focus on getting well. Your beauty will always be there, more than you know. I haven't been here long, I tested the waters for a while, and finally jumped in last month. You made me feel welcome and happy. I had been in such a funk, but you have been one of those that brought me out of it, with your amazing ability to make people feel good. I thank you for that. Let me help you out of yours. Please let me know if there is anything I can do for you. Really!

    Lini
  • djd
    djd Member Posts: 866
    edited June 2006
    Fumi - You ARE beautiful. Weight, swelling, hair loss are just "scars" that any mini'zilla would be wearing after the battle you've been through.

    Your heart, kindness, spirit, humor remain intact and shine more than ever before.

    I know it's sad to feel "ugly" - I have felt that way at different times, either because of extra weight, a pimple on my face, bad (or no) hair days...but this journey has helped me to gain perspective..it's what's on the inside that counts.

    Sending warm thoughts and a great big silly {{{{{{cyber-hug}}}}}} across the ocean my friend,

    hang in there...remember, this TOO shall PASS.

    Donna
  • beachcottage
    beachcottage Member Posts: 4,688
    edited June 2006
    Dear Fumi
    my heart breaks
    into a million pieces
    reading your post

    You are so
    beautiful...I feel your
    kind spirit and it radiates

    I felt
    the same range of emotions
    and questions lurking deep inside
    of myself after completing
    treatments~~they lasted for some time

    Three years ago
    this time I was recovering
    from surgery and trying to
    wrap my mind around the start of treatments

    Two years ago this time
    I was where you are

    Today I look
    back in amazement
    and thanks for having come this far

    The journey back
    is hard~~you have been
    through so much sweet friend

    It takes time to regain
    energy...confidence and strength
    please do not loose hope
    in time things will get better...it will
    I promise

    In the mean time
    come here and feel support
    we are here to help
    you and walk with you
    as you find your way back

    sending you
    hugs
    vibes of comfort
    and lots of love

    xoxo
    Patti
  • cowgirl
    cowgirl Member Posts: 777
    edited June 2006
    Wow I miss everything!

    Fumi girlfriend you are loved and cared for! Snap outta it!!!!! You are too special to be so sad!

    Been busy miss yall so much! Mom's appartment is officially empty. I am doing another garage sale here at my house, the kids feel robbed of a summer yet again but what are you going to do? I had cancer mom had to be moved! They need to cowboy up too!

    Okay my vent is over! Glad to see familar faces here to cheer up the crowd, stick around gals!
  • littlecatsfeet
    littlecatsfeet Member Posts: 87
    edited July 2006
    Fumi, I really do know how you feel.

    I hope you can feel me hugging you right now - you hang in there, and I'll be praying that these days fly by for you -

    Leslie
  • csp
    csp Member Posts: 2,765
    edited July 2006
    Fumi,
    I feel so sad when you are sad.
    You made me think of something. When Denise was going through the active part of treatment no hair, swollen from decadron , throwing up, too tired to even go to the front room. I kept thinking why does she still look so pretty?
    I would look like a toad, I was amazed. she did'nt think so , and most certainly did'nt feel very pretty, she felt like a toad, a squished one!

    Today Fumi she can see out of eye's that are not feeling all the effects of treament, today Fumi she will tell you she looks good,and that day will happen for you too sweet friend.

    Love ,
    Carrie

    PS
    I saw you picture too, and I and my husband think you are soo pretty.
  • Sandra1957
    Sandra1957 Member Posts: 1,701
    edited July 2006
    Fumi,

    Hope you are okay. Haven't seen any posts from you today. Praying you had a better day. Sending you positive vibes.

    Lini
  • csp
    csp Member Posts: 2,765
    edited July 2006
    Fumi,
    I am worried about you will you please checkin with us
    even if it is just to tell us you are taking a break?

    We care very much about you~~~~

    Carrie
  • beachcottage
    beachcottage Member Posts: 4,688
    edited July 2006
    ((((fumi)))

    gentle hugs
    sweet friend

    xoxo
    Patti
  • nowheregirl
    nowheregirl Member Posts: 894
    edited July 2006
    No worries, I'm still alive.

    I'm just tired of everything. I've been fighting this battle almost for a year and haven't had a break at all. Did two different regimens of neoadjuvant chemo for 6 months, had a lumpectomy and axillary node dissection, and have been on Taxol again along with Lupron shot plus Tamoxifen then am going to do 35 sessions of radiation in a couple of weeks. I had to go through all these and will have to do everything in the future all by myself with NO support at all. There's no one here who works and earns money to afford the bills for me, who brings or makes meals for me, who cares and pats on my back when I come from chemo or when I'm sick, who hugs me when I wet my pillow with a lot of tears. I have to pressure myself to be strong as it's the only option that is given. I have no other choice since no matter how sick or depressed I am, there's no one to help me out.

    So what do you fight this battle for? After all, you couldn't fight any kinds of battles if you didn't have something or someone to protect, to look forward to or to love. Love makes you strong. Dreams make you strong. But I have none. This damn disease took them all away from me. I'm starting to lose motivation. I am thinking about having a break from all the treatments. I've already emailed my oncologist and told him that I want to put all the treatments on hold. (No response yet) It may increase the risk of recurrence but I don't care. I don't want a long life in the first place when I have nothing to look forward to.

    I don't feel like posting at the moment because I don't see where I belong on these boards. If I should only speak from my own experience and stay away from the sections I don't apply to, then I'll have to leave because things are usually a little or very much different to what you experince where you live. I did go through chemo and am currently doing it again but since I haven't really had any side effects, I can't say "been there done that" as I can't feel the pain of sisters as my own. I can't offer advice when I have never experienced their "pain". These are why used to spend most time on the Moving Beyond board. But it's getting rather cruel for me at the moment. At least not comfortable at all. I don't want to hear "God has a plan" thing as it's too hard to believe when you're having a real rough time. And I don't have faith in the first place. (Most people don't where I live.) I get irritated when I read "how strong they have become" thing as I don't want it to be said by those who didn't have the need to be strong when they're in the active treatment phrase, or those who can expect a lot of support from their family or other people. They are able to be taken care of and know they are loved. They don't need to be as strong as I have to.

    Sorry if I offend anyone. I know I am being childish but I'm emotionally exhausted. Maybe I need the "Can't get on with life" board.

    One thing before I go...
    Just because I don't post as often as I did or I don't PM you back when I get one from you doesn't mean in any way I don't care about you or I don't think about you. This damn disease is nothing but crap however it has brought me some really wonderful friends. You're all in my thoughts everyday.

    Thanks for being concerned. I appreciate it.
  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2006
    Oh Fumi, my heart does hurt for you.
    And I'm not even sure that a hug will help, but I'm sending it anyway (((((((((((((((((((((dear sweet Fumi))))))))))))))))))))))

    So many of us are feeling we don't belong on this board at the moment, that there is no place for us or what we have to offer. But I've decided we can only feel that way if we allow ourselves to, what others think of us or how they act is not us and we cannot be defined by that. But I do hear you and I do respect & appreciate how you are feeling.

    You do have a place on this board ~ it's in our hearts always ~

    Praying for better days ahead for you and that you are able to create some new dreams ~ and know that we do love you.
  • momarcela
    momarcela Member Posts: 6
    edited July 2006
    I am new to this board as I was diagnosed a month ago and am 2 1/2 weeks post masectomy with immed recon (expander) - I read and read and only sometimes respond - I even feel quilty responding or venting my own emotional bs sometimes because I caught this bc early - stage 1 - was able to start immed recon - had clear margins - e/p + and will not have to endure chemo - just tamoxifen - I have a cervical issue which is a whole other drama that was dx a week prior to surgery that I am dealing with - BUT ... I still feel sometimes like I have no right to complain or feel sorry for myself - there are those of you who have had this far worse and harder -
    I am divorced with 2 kids - a 12 yr old son who lives with me full time and 19 yr old daughter who is moving back in with me this month with her own set of dramas - I have a live in boyfriend of 1 1/2 years (who brings with him a 6 and 8 year old son) and who I wonder if we will make it through as a couple - Our relationship has had to endure one difficult trial after another and this one takes the cake - and even though sometimes I have a houseful of either kids who needs me or relatives visiting so they can "help", my family who do not like/approve of my boyrfriend and remind me whenever they can or my boyfriend who relieves his stress by snoring on the sofa - I feel so alone - I HATE having to depend on others for help - I HATE the tightness and the nerve pain felt with the expander - I HATE the weekly doctor appointments and the upcoming cervical surgery this week - I HATE the crying spells I find myself in or the physical limitations I have at the moment - I HATE the waiting games for test results - and then I feel SOOOO ungrateful - When I was first dx I thought Oh My Gosh - I am going to die - I have cancer - Now ---- I am getting news that all points in the direction that this will not kill me - It will just be one heck of a ride - and I still can't rejoice and feel grateful and appreciative of all that I thought I would lose -
    Fumi - I don't know you - (don't even know where you live) and I haven't been a part of your very long journey - but your emotions and feelings of lonliness and emotional exhaustion are something we share in common - even if our situations are not identical - It comes from within - and you CAN get on with life - even when you think you can't - because you don't need others to care for or live for - you live for YOU and you are worth the effort!
    As for your faith "issues" - I am Christian (although I have lost many friends because I am living in sin with my boyfriend!) - My mother is buddhist and my father was an athiest - So my eclectic philosophy is that God is love and HE loves you ALWAYS - that Nothing is permanent and that pain and suffering are an inevitable part of life - and that it's the little things in life added up that bring us joy - Cancer did not take your life - DON'T let it deplete you anymore than it has to -
    Now I will log off and see if I can't take my own advice!
    Marcela
  • djd
    djd Member Posts: 866
    edited July 2006
    Fumi,

    Sending {{hugs}} your way, sister. You've been awfully depressed lately, dear. Maybe it's time to ask the doctor for an anti-depressant, just a boost to help bring you back from the darkness.

    I'm not saying you haven't earned the right to feel so sad, but I am worried about you lately.

    Please do not continue to suffer needlessly. There is a world of hope out here - you know that! But sometimes our body/mind/chemical balances get out of whack and depression takes hold. If you were a diabetic, you'd take insulin, right? Well, a little zoloft/prozac/wellbutrin or whatever may be the "insulin" you need to feel good again.

    I hope I'm not over-stepping, but please know that I speak from experience and I can hear the familiar desperation in your recent posts.

    We all love you and care about you deeply, Fumi. You don't have to be "strong" for us all the time.

    hugs & luv,
    Donna
  • Deese
    Deese Member Posts: 144
    edited July 2006
    Fumi, I have to agree with Donna. You sound like I was feeling when I decided I needed some help. I was afraid that I would get to a point that I couldn't return from and I just didn't have the strength to fight the cancer and fight my emotions. Best decision I ever made, never plan to stop taking them! Peace of mind is just so important in this whole process.

    Don't make me come over there! It won't be pretty! (Also, Carrie would have to box me up and pay postage!!!)

    Love you sis,

    Denise
  • csp
    csp Member Posts: 2,765
    edited July 2006
    Okay!! fed up, had enough, stop the merry-go-round I want off,tired of hearing how you should feel because it just is'nt happening for you yet? need to put it out there with no judgement .

    I am if I may Fumi adding my: SOMEWHERE YOU DON'T HAVE TO BE STRONG THREAD right in here with Your WHAT THE HECK

    a combination of both so you can be safe to whaaa vent
    stomp your foot whatever you want it's okay!! their your feelings and there ain't no right or wrong to them.

    Hugs everyone~
    Carrie
  • cowgirl
    cowgirl Member Posts: 777
    edited July 2006
    Fumi,
    My colon cancer friend went through a lot of the feelings you are feeling. He hit rock bottom, and honestly was fed up. His quality of life was not okay, and he felt like the treatment was worse than the cancer.

    I say this because what he decided was to take a treatment break, space out his chemo. It was the best decision, his oncologist agreed. So he is cancer free now, and you know he is much happier. He said it was the best decision, he felt like he was riding a freight train and couldn't stop it.

    We all need a break from this board, and I truly understand. Everyone needs space and support, and at different times it is different for each of us.

    I love you and support you. I wish I could be there with you to give you hugs.

    I understand your faith situation, so don't worry about offending me, heck I have been deleted and am expert at killing threads.

    Just want you to know I love you Fumi!
  • csp
    csp Member Posts: 2,765
    edited July 2006
    >I understand your faith situation, so don't worry about offending me, heck I have been deleted and am expert at killing threads.

    It's true Fumi she has a reputation !

    hugs,
    Carrie
  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2006
    I hope Marcela comes back to read this thread ~ after she's gone to take her own advice ~ because I want to send her a great big hug as well
    (((((((((((((((((Marcela)))))))))))))))))))))))
    you are going through the journey yourself, you have had and continue to have ups and downs and strong emotions, you identified so strongly with Fumi's feelings and you took the time to come and help her and show her that life is good and life is worth carrying on.

    What a very generous and giving spirit you have. Bless you on your journey.
  • Calico
    Calico Member Posts: 1,108
    edited July 2006
    Fumi,
    you are beautiful and you may say what you want where you want!!
    It's the Decadron for the most part that makes us feel rotten and look different.
    Want to see an ugly picture?? I e-mail you mine!!!
    I am sooo sorry for your pain, I can't take it away from you.
    BC sucks big time. But we need you here and therefore you just have get through this!!
    We love you!!
    [[[HUGS]]]

    God Bless
  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2006
    Fumi: I sooooo want to get on a plane and give you a hug and show you how much you are loved ... I live by myself too... I have 4 sisters - but none of us live in the same town ... I went through my cancer treatments alone ... though I skipped chemo... had a lumpectomy, radiation, hysterectomy, and am on arimidex - I fought and continue to fight for myself ... and the ability to help support others who are going through this battle...
    even when we go through the same or similar treatments - each of us has different and differing levels of side effects and reactions from the treatements ... I personally do not think that that means we cannot reply in support of someone else ...
    I think that each of us can help each other .. no matter what our treatements entail .. as we can understand each other - maybe not the specifics of each individual treatment plan - but with the fear - the anxiety, the overwhelming feelings, the feelings of being alone and nobody understanding how we really feel ... the overwhelming feelings and unknowns of our lifes that are forever changed by the unwelcome experience - and journey that is forced upon us...

    Can you take a break from work for awhile ? Does your work have a short term disability program - or perhaps your co-workers would be willing to pool some vacation so you can take some time off during treatment - or perphaps there is some govt program that can help you for a short period of time ??? Is there a social worker at your treatment center that can offer you ideas for some type of assistance and support ?

    Fumi: I care about you very deeply ... and want to help if there's any way that I can ... please ... please... let me know if there's anything I can do....
    With love and hugs,
    Doreen
  • KariLynn
    KariLynn Member Posts: 1,079
    edited July 2006
    Fumi,

    You don't know how much I want to come kidnap you and bring you home and take care of you. No one should have to go through this alone. Please try to find some support (and stick with us for the emotionmal type.) Sorry I can't offer you any real hep but am sending a ((hug)). And really, if you decide to run away from home, there's room for you in Kansas!!
  • nosurrender
    nosurrender Member Posts: 2,019
    edited July 2006
    Fumi,
    My sweet friend.
    Let me tell you about me. I am one of the ones who is Ra RA! You can do it! You are Strong! Bullets bounce off you!

    but THAT WAS NOT ME.

    I was completely alone for all of my treatments and surgeries.

    I remember during one of the surgeries they said I HAD to have a family member take me home. I had none! I hired a car service and had to pay the driver extra to pretend to be my cousin. In the recovery room they asked me what my "cousin" looked like. I only saw the back of his head - I had no idea how tall he was or what he looked like! I said "average" and that passed. But then he dropped me home and I had no cousin and I had to do everything for myself.

    I would go grocery shopping before each infusion and try to think of everything I could possibly need because I knew I wouldn't be able to leave the house for a few days. I drove to chemo and drove home, picking up my meds on the way. I had a really bad reaction to chemo. And I was allergic to all the anti nausea meds, so I literally spent the first couple of days and nights, sleeping on the bathroom floor. BUT when I needed another pill or needed some ginger ale or some crackers I had to drag myself up and get it myself.

    I wanted to quit. In fact I did. I told my onc - no more. I am killing myself to save my life and I don't have a life worth saving. I would hear about a young mother who lost her battle and think that should have been me in her place, I have nothing, I am nothing, she deserves to live not me.

    I don't know if I ever posted this here, but before my dx I had a spinal surgery that went really bad. I left the hospital unable to walk without a walker. I graduated to a cane and six mnths later got BC. I went through tx with my cane. The problem was I have an unstable spine, and every time I got sick it would make my back worse. That would mean losing all feeling in my legs.

    I told my onc I quit but I showed up for the next one and the next one until I was done. I was an automaton. My life was comprised of going to the doctor, getting sick and being in pain from my back. What made the back worse was I am allergic to all narcotics to the best I could do was tylenol.

    I made it to the last chemo. On that last day I couldn't stop crying because I could not believe I made it. That I actually managed to drag myself there and take care of everything that needed to be taken care of.

    I still had rads ahead and I had a bad time with those too. During chemo I needed more surgery for another lump they found and after rads they had to remove the bottom part of my breast to take off the burned, dead tissue.

    By the time I was DONE I wasn't popping any champagne. I was exhausted, beat up, beaten down, and felt like FOR WHAT? WHAT kind of life am I going to have NOW?

    This whole thing, while we reassure eachother that it is so doable, is DOABLE... but it takes its toll on our spirit. You see, they can heal us, treat the cancer, but what about the rest of us? What about our spirit? It has been shocked with the dx, terrified by surgeries, assaulted by chemicals and a never ending fear of which is worse- the disease or the treatment??

    You feel so badly because you are going through HELL. You are at the worst part right now. The part that makes you forget WHY you are taking the tx, and most importantly that there IS an end to this.

    No matter how bad you feel, it ends. If you told me that when I was sleeping in the bathroom I would have thrown something at you.

    But here I am, Fumi. It ended. I went to hell... the same hell you are in. But you have to remember this, they let you out.

    Now the day you are done you won't feel well. You will feel lost, like NOW WHAT??! And you will still think of yourself as a permanent patient- Fumi no more.

    I did!

    Slowly, your spirit starts to heal. And it starts to relax. Your whole being has been on RED ALERT for months and months now. That fight or flight response that is raging through you is wreaking havoc on your spirit. But when you are done, you kick it down a few nothches... and then a few more... and somehow your spirit sees it is safe to relax a bit and then you will too.

    Now here is where the Ra RA part comes in. When you have fought the last battle and kicked this beast to the curb for good, when the dust has settled you suddenly realize- "holy crap! I did all that??? And I did it by myself?!"

    That is the most empowering realization in the world.

    But you have to get there... RIGHT NOW? It is OK to feel like sh!t. If you didn't there would be something seriously wrong with you. You have hit rock bottom and have had enough. THAT iS OK and it is normal. Fumi needs a break...

    ...it is coming. You just have to ride this wave out. If you quit now that would mean maybe having to start from square one all over again. DON'T do it!

    You are in it, you are doing all the things necessary, and it is almost over. Remember this above all else: IT ENDS... and when it ends Fumi begins.

    I WAS you Fumi. And here I am, almost five years later, here because I didn't quit when I wanted to. There is an end to this mess and you will be YOU again.

    And the you I know from these boards is pretty awesome. Give yourself a chance to beat this beast and be able to look back and shake your head and say I DID IT.

    NO- You do not feel like it now.
    No- you want it overwith now.
    And I understand that. But do yourself a favor...please Fumi, finish it so it really is OVERWITH FOREVER.

    Please PM me if you ever want to talk. If I can get from the place you are in right now and become a RA RA cheerleader- anyone can.

    Let yourself feel bad- it is ok! but also let yourself get better and get rid of this cancer NOW.

    "Think of all the beauty that's still left in and around you and be happy." Ann Frank

    With love and total understanding,
    your friend, g

    PS...now do you see how I came up with the name nosurrender???
    Don't let the Beast win. WE WANT FUMI.
  • djd
    djd Member Posts: 866
    edited July 2006
    ns - I am so touched and inspired by your story...you are a strong woman, to say the least!

    hugs (extra extra gentle)
    Donna

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