Fun beadgirl-hope you are feeling well

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  • Andeoup
    Andeoup Member Posts: 29
    #22
    ccfighter said:

    Andeuope,
    it sounds like you

    Andeuope,

    it sounds like you have had a lot to deal with.  Thank you for sharing and for helping the cause with your contribution to research.  I also opted into a trial where I donated blood and biopsies and medical records for research.  I have no idea what they are doing with it but I hope it helps someone someday.  Keep enjoying each day and on treatment that makes you feel better.  Hugs.

    CCFighter

    I believe most of us are leading and challeging the medical professionals. We must stick together. All cancers are horrible. But ours is so personal because it takes our physical sexual attributes away and damages our external female organs much like breast cancer but worse in that we are danaged where we sit and our mobility is shaken. We are not receiving tbe same care or respect that our pink ribbon ladies do. Most women have no idea about this type of cancer. Thery spend so much time worry about breast and they forget that cancer affects all organs.

    I spend much time saying to women no I do have breast cancer. Thier natural assumption is that I have breast cancer. The other misconception is because I do look like a person who the media constantly shows with cancer. That I do not look like I have cancer. I say to them what does cancer look like?

    I chose not to have a treat whereby my cancer does not respond. I choose to live the best way I can while I am alive. Most people have a false since of knowledge. Chemo and radiation is not the cure all to all cancers. 

    My Dad had a unknown primary cancer and used these treatment and he died anyway. So I choose to live and not be a victim to harsh treatments that will not treat my particular cancer.  I cared for him for 10 years until his death. Cancer attack every part of his being.

     

     

     

     

     

  • Andeoup
    Andeoup Member Posts: 29
    #23
    funbeadgirl said:

    Well ladies, since my last

    Well ladies, since my last visit here I have broken another rib and have already had 5 radiation treatments, I will have 5 more next week. They have also upped pain medication until the pain subsides from radiation. My PETscan showed a new mass in C3 area, which doc did not seem too concerned about, a new tumor in thoracic spine, but rest of previous tumors showed no remarkable change...so i guess stopping the chemo really had no effect on the disease. Good to know. The way it stands now is I will finish my treatments, then see oncologist in 4 weeks.

    In the mean time I will get back to enjoying my life and get back to swimming, two broken ribs have kept me immobile for last two weeks.

    as I read through everyone's postings, I can see that we all are affected in the same way, we also are fighters, having much to live for and desire to build ourselves up by building up others. I guess that is what good friendship truly is, the desire to help others by helping ourselves, sort of setting a pattern of hope to guide us through the seas of uncertainty . We will all have times of despair where we feel we can't go on anymore, but we will also feel as though our souls can soar the highest of heights with a renewed sense of vigor. In all reality, it's that we must learn how to ride those waves that take us up and down and tether us about, remembering that we have the strength to hang on . Presently I am taking my life in about 12 hour segments, basically floating along and do my best every day. we all have great abilities inside of us to endure and pursue, my best wishes to all of you ladies that continue to fight the battle.

    FunBeadGirl

    I send to you Love and Hugs. Many days are so uncertain. You focus on what makes you feel better. Put you first.

  • Andeoup
    Andeoup Member Posts: 29
    #24
    ccfighter said:

    Andeuope,
    it sounds like you

    Andeuope,

    it sounds like you have had a lot to deal with.  Thank you for sharing and for helping the cause with your contribution to research.  I also opted into a trial where I donated blood and biopsies and medical records for research.  I have no idea what they are doing with it but I hope it helps someone someday.  Keep enjoying each day and on treatment that makes you feel better.  Hugs.

    CC Fighter

    I think they put the research medical records in a database and pull from them to assist people with the same or similar cancers.

  • Andeoup
    Andeoup Member Posts: 29
    #25
    annett said:

    Hello Andeoup you are such a

    Hello Andeoup you are such a trooper! It is truly an unselfish act for you to help the future cancer victims. I am sorry you have this in your life. God willing maybe things will get better for you. I too have vulvar cancer but the one that is more common than yours. I have found that vulvar cancer is rare but a lot of ladies give light at the end of the tunnel. Hope your day is good today! Prayers, Hugs, and Blessings, Annett

    Thank you Annett.

    Thank you Annett. I am truly honored to know each of you....

  • Andeoup
    Andeoup Member Posts: 29
    #26
    annett said:

    Hello Andeoup you are such a

    Hello Andeoup you are such a trooper! It is truly an unselfish act for you to help the future cancer victims. I am sorry you have this in your life. God willing maybe things will get better for you. I too have vulvar cancer but the one that is more common than yours. I have found that vulvar cancer is rare but a lot of ladies give light at the end of the tunnel. Hope your day is good today! Prayers, Hugs, and Blessings, Annett

    Annett our journey

    Each if us and our cancer are special and rare. We all are rare jewels and we have a mission to educate and receive better and proactive care. Proactive care and knowledge will go a long way. 

  • Andeoup
    Andeoup Member Posts: 29
    #27
    annett said:

    Hello Andeoup you are such a

    Hello Andeoup you are such a trooper! It is truly an unselfish act for you to help the future cancer victims. I am sorry you have this in your life. God willing maybe things will get better for you. I too have vulvar cancer but the one that is more common than yours. I have found that vulvar cancer is rare but a lot of ladies give light at the end of the tunnel. Hope your day is good today! Prayers, Hugs, and Blessings, Annett

    Everyone and New Research

    I located this fascinating article that was published on April 2015. It describes all Vulva cancer types.  It is really helpful for new and old members. The article was on Researchgate.com and reseach article is called: Vulvar Cancer for Dermatologist. What I learned is that my metastasized mucinous adenocarcinoma is a combination of Aprocine adneocarcinoma (AA) breast-like AA and Andenoid cystic carcinoma (ACC) of the Bartholin gland. My other research on sweat gland cancer, which is what my current doctor thinks it is, reports world wide literature only 38 cases as of 2013.

    Very interesting...

    You can save it as  PDF file. 

    I am always searching for new research and better care. I had no idea in the beginning of my battle. 

  • Andeoup
    Andeoup Member Posts: 29
    #28
    annett said:

    (No subject)

    Smile

    Hello everyone

    I am sorry for not responding to each of you. I read each of your post and I think about each of you and your journey. Please know that. I am not always the best communicator. Since May 6, 2014, I have been enjoying a wonderful gift. My sweet daughter in law who has severe Crohn's disease gave birth to my first and only grandson. I spend several days a week visiting and loving baby Lucas. God has granted me a gift that is priceless. My husband in charge of driving us and helping do the things I can not. But my heart is so full of love and joy. This makes me fight harder. I have been unble to lift baby Lucas since he was 4 months old my legs collaspe. But I am determine to always have my visits. He is now 17 months old and so sweet. :)  

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