Where I've been, where I am and where I am going.

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Dawne.Hope
Dawne.Hope Member Posts: 823
edited March 2014 in Breast Cancer #1
Some know my story. It began a little over a year ago when I found out I had DCIS. Within a month of that diagnosis my mom was put under the care of hospice. In November she died from BC. Winter was agonizing as I waffled between traditional treatment for DCIS and DMX. I was BRAC1 and 2 negative but my mom and my grandmother have had BC. In February I opted for DMX with immediate reconstruction with TE's. That whole process proved longer, more difficult and painful than I expected. I finally had my TE's replaced with silicone implants seven weeks ago.

I've developed swelling in my fingers. Walking was a huge part of my life before BC. I walked 5 miles every day, lifted weights three times a week, did Pilates twice a week. I haven't been able to do that for six months. My belly has grown soft where it was once in shape. It's depressing not being able to do what I once did. After my exchange surgery I tried walking but my fingers would swell and not go down. Devastating. You can't get lymphedema with only one sentinel node removed? Bu## sh**. Look at my fingers! This summer it's been all I could do to get out of bed and move on with my life. No one told me that lymphedema was a possibility if you have sentinel nodes removed. Well, it is possible and I have it, not bad, but I have it. Getting to meet with a certified lymphedema specialist proved to be difficult. No one really believed me. Finally this summer, after a meltdown in my PC doctor's office, after a ultrasound on my arm to prove I didn't have a blood clot, I was finally able to get in to the occupational therapist. How healing it is to have someone believe you, take you seriously and help you. I've had that luxury the last few weeks. I've learned how to do the exercises to help, she is teaching me the massage techniques. The swelling in my fingers is gone, the pain in my fingers, armpit and side are gone. You don't know how much pain you've been in until it finally starts to go away. I'm so thankful. Today's been a good day. It's so nice to finally be pain free after six months of constant pain. Many of you have it worse than I've ever had. I just want you to know there is a corner. I'm beginning to see the light. My Spirit is lifted. I'm thankful for healing therapists and people who listen with compassion.

Last week I saw some pictures from a photographer named David Jay. I posted a thread called "The Scar Project." That's the name of his book. I'm going to bump it up. Please check it out. The pictures are of young breast cancer survivor's showing their scars. Some are defiant, some are crying, but all of it is real. When I looked at those beautiful young women and saw how beautiful they are, how hopeful they are, how sexy they are ... I saw myself in them. I never knew how deep the scars of cancer have affected me until I looked at those pictures. It resonated deeply within me ... I'm still trying to figure out the why ... but I think part of it is I have felt ugly, scarred, maimed for life, not sexy, not beautiful ... but when I saw those women I saw all of those things and if they still are all of those things ... so am I and so are you.

I'm leaving the past behind me and I'm looking forward to the future. It doesn't have to be like the hell this past year has been. I want you to know there's hope, there's light, there's healing.

Thank you for all the love and support you've shown me in the past year. I love you.
DawneHope

Comments

  • New Flower
    New Flower Member Posts: 4,294
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    Sending you a big hug
    I am really sorry that nobody believed you for long time, while we did. I am glad that your lymphedema is better and the pain is gone. Mine is not. But we will continue fighting and prevail. Swimming is very good for both fitness and lymphedema. I was swimming during summer 3times a week outdoors and I am going to sign up for indoor pool
    To be honest I cannot look at the Scar project photos. I just can't. I do have enough courage to face a mirror, I look at my own scars every day in the morning and night trying convince myself that I am sexy and wonderful, and cute. It is hard, but life is going on.
    Cheers,
    New Flower
  • EdnaM
    EdnaM Member Posts: 30
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    Node removed
    I had one node removed and fortunately so far no swelling. It's a question I asked surgeon, oncologist and breast care coordinator they all tell me chances are slim with only 1 removed but there is a 2 to 4% chance of it occuring anytime the rest of our lives. I was
    told that should never have blood drawn from that arm and also no blood pressure cuff, don't carry handbag on shoulder or do anything that will affect blood flow to that extremity.
    I'm glad you're heading in the right direction with treatments - keep your chin up!!
    I've also looked at the pictures in the book and certainly wish I could have seen something like this before surgery; it would have made easier to know what to expect 'the new look' was going to be.
  • carkris
    carkris Member Posts: 4,553 Member
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    EdnaM said:

    Node removed
    I had one node removed and fortunately so far no swelling. It's a question I asked surgeon, oncologist and breast care coordinator they all tell me chances are slim with only 1 removed but there is a 2 to 4% chance of it occuring anytime the rest of our lives. I was
    told that should never have blood drawn from that arm and also no blood pressure cuff, don't carry handbag on shoulder or do anything that will affect blood flow to that extremity.
    I'm glad you're heading in the right direction with treatments - keep your chin up!!
    I've also looked at the pictures in the book and certainly wish I could have seen something like this before surgery; it would have made easier to know what to expect 'the new look' was going to be.

    I know the frustration of
    I know the frustration of not being listened to that happened to me during treatment. I felt so alone, and so weak that it was hard to help myself. because I did not follow what was typical I was dismissed. My social worker said they dont know what to do with you. I finally got better but advocated for myself, being forceful about what was working and what wasnt. and insisting. Dont know why it has to be such a battle sometimes but it is. so glad you got someone to listen and things are going well. The book is too hard right now, I did look at the pictures on the internet, but it just makes me sad. Sad that women have to have this done, that we dont have an answer to the cause, and a better way of handling this disease. These ladies are so young. I feel they are beautiful, just I am not. Funny thing I dont get down about it, its just how I feel about myself right now. although I cant say I ever thought I was beautiful.
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
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    carkris said:

    I know the frustration of
    I know the frustration of not being listened to that happened to me during treatment. I felt so alone, and so weak that it was hard to help myself. because I did not follow what was typical I was dismissed. My social worker said they dont know what to do with you. I finally got better but advocated for myself, being forceful about what was working and what wasnt. and insisting. Dont know why it has to be such a battle sometimes but it is. so glad you got someone to listen and things are going well. The book is too hard right now, I did look at the pictures on the internet, but it just makes me sad. Sad that women have to have this done, that we dont have an answer to the cause, and a better way of handling this disease. These ladies are so young. I feel they are beautiful, just I am not. Funny thing I dont get down about it, its just how I feel about myself right now. although I cant say I ever thought I was beautiful.

    You are beautiful!
    NewFlower and Carkris -
    I'm sorry looking at those pictures brings you pain. For me, it was healing and cathartic. You're beautiful. The lie that cancer tells us is that we're ugly, we're our breasts, we're scarred, maimed ... and it is a lie. Please don't buy that lie. We're so much more than what cancer does to us. Cancer may take our breasts, our strength, our ability to concentrate but it cannot take away the beauty within us. You're beautiful.

    Much Love,
    dh
  • VickiSam
    VickiSam Member Posts: 9,079 Member
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    You are beautiful!
    NewFlower and Carkris -
    I'm sorry looking at those pictures brings you pain. For me, it was healing and cathartic. You're beautiful. The lie that cancer tells us is that we're ugly, we're our breasts, we're scarred, maimed ... and it is a lie. Please don't buy that lie. We're so much more than what cancer does to us. Cancer may take our breasts, our strength, our ability to concentrate but it cannot take away the beauty within us. You're beautiful.

    Much Love,
    dh

    Dawne.Hope .. You are 1 classy lady and a wonderful
    caring friend to me. Your words bring many of us hope for the future and your Warrior spirit lives within every sentence you print.


    Strength, Peace and Courage, my friend as you live life ..

    Vicki Sam
  • natly15
    natly15 Member Posts: 1,941
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    One could not have said this
    One could not have said this more eloquently. Thank you so much for sharing your hope and your light. This is a quite touching post. I haven't viewed the photos but will.
  • SamuraiMom
    SamuraiMom Member Posts: 295
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    xxoo
    I've so missed you Dawne!!!

    You just made me cry. (in a good way. :) )

    I'm going to look up The Scar Project today.

    Love you!

    xxoo,
    SamuraiMom
  • webbwife50
    webbwife50 Member Posts: 394
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    Thank you
    Thank you for sharing your experiences. I had,and have many of the same feelings, particularly regarding my body, the things I am unable to do, pain, feeling sexy, and the big "why". God Bless you!
    Alison