allisonburkebw

Survivor since 1981…
I was young and strong. At age 22, my life was spreading out before me. Synovial Sarcoma, which usually strikes teenage boys, is rare, and almost always results in the amputation of a leg, sometimes an arm . It was even less likely that a young woman would be afflicted. My tumor, the size of a man’s fist, was in my shoulder which, thankfully, couldn’t be amputated. Oncologists met in teams, and decided to hit me with everything they had, as the tumor was known to be aggressive, and metastasize to bone or lung. While I was never sick from the cancer, I now spent a day and a half of every month retching up the lining of my stomach. My skin was burned from radiation. I had no hair. Anywhere.

I have survived a quarter of a century now, blessed with two beautiful daughters, Madison and Shelby, that I was warned might not exist. My husband John appreciates the gift we have been given, as he was there from the beginning, rinsing out the bucket, and sitting quietly near me. At the age of 12 John lost his own father to cancer. Having them in my life is a gift.

Prior to my diagnosis, I was in a relationship that was wrong for me. I didn’t have the wisdom, or the courage to trust myself, and I allowed too much negative energy to control my life.  I was made to choose between the relationship, and my family. I chose the relationship, and severed ties with people that I loved.  I believe now that the guilt of hurting these people that cared about me deeply made me sick, that the ugliness and pain that I had shoved down inside of me literally made me ill. When I was diagnosed, I was instantly reunited with those that I had hurt, and forgiven. I was placed in a womb of love and healing. Positive, caring people surrounded and supported me, showering me with unconditional love.  It is undeniable that not only our minds but also our hearts are connected to our bodies. Shutting people out made me sick. Letting them in made me well.

My personal goals have been shaped by the lessons that cancer has taught me.  It is a lifelong process to pursue these goals.  So many years later, I sometimes have to remind myself that just waking up every day is a gift. Letting the people that I love, and the people that love me, be my compass comes more naturally. I try to remember that even the smallest of kindnesses can have an effect on someone’s day, or even their life. Not only am I inspired to surround myself with authentic and true people, I work towards being one of them everyday.  It is a challenge to keep these goals in sight.

Thankfully, I wake up everyday to these challenges.

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  1. Montye Gardner says:

    Allison, thank you so much for sharing your story – gives us all HOPE. I wanted to share the name of my new doctor, Dr. Nicholas Gonzalez, in NYC. He is curing cancer (all cancers – synovial sarcoma included) with enzyme therapy. He uses the word manage, but his patients will tell you that they are cured. I have been on the program for over four months and have never been healthier. My immune system is strong and I feel great, no more discomfort in my lungs. Hope anyone who has synovial sarcoma or any other cancer will look through his website http://www.dr-gonzalez.com (all natural, will not make you sick like chemo). Wishing you all the best!

    Montye Gardner
    http://www.allthisandmore.typepad.com
    Diagnosed with Synovial Sarcoma Sept. 2009, spread to both lungs April 2010.

  2. Jaime says:

    Hi. I currently have a friend who has battled monophasic synovial sarcoma for over 5 years without remission. I won’t go into details, that’d take all day, but I’m desperate to help him. I have heard that ET 743, Yondelis, is a very promising drug. Do you know of this and treating SS? Is there any treatment advice, beyond what is protocol, that you could provide. Thanks so much!! Jaime

  3. Her Husband says:

    Thank you, Allison. My wonderful wife was diagnosed several months ago after 13 years of having an
    unexplained tenderness in her thigh. The worst was the fool “physician” who said it was all in her mind. During her wait
    the tumor grew to 5 cm and stage 3/grade 3 when removed. We were told that her surgeon is one of the
    best in the country, but it is all so scary for me. She’s always been strong and I want to be strong for her.
    The last thing she needs is me looking at her with sadness in my eyes. Sometimes it is all that I feel. Stories such as yours
    help. ANd even if they only help a little, a little is a whole lot more than nothing. Thanks again, Allison.

  4. jennifer s says:

    your story means alot to me_ my sister is sick with synovial sarcoma_ i’m really scared 4 her_ you gave me hope_ she just got her surgery, she’s only 15_ it kills me to see her sick_ her tumor was 6 cm_ they took it out_ we’re waiting now to see what the doctors say_ you gave me a little bit of hope_ when i go on these websites, they all have negative things that the prognosis is poor.

  5. SGD says:

    Your story is absolutely amazing and inspiring… and I thank you from the bottom of my heart for this message which has become a part of your life… the PAFOC blog is followed by people from around the world, and you have simply and profoundly written something which all survivors feel deeply… thank you for coming forward with your story and reminding us all, on this May Day, that we have so much to be thankful for and to appreciate…

    “No man remains quite what he was when he recognizes himself.” Thomas Mann

    SGD

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