“I AM Heather. I Am Not My Genetic Condition.”


If you are new to this blog, read this so you know what this project and post, #Brain Tumor Thursday, is about.  You can also read the page on the top of the blog that is marked “Brain Tumor Thursday.”   Archive profiles are availble there too, as well as, links to information, support, and websites for brain tumor patients and families.

It is my pleasure to introduce you to Heather.

I hope..

I hope that I am able to live the next 40 years of my life  without overwhelming fear and panic of my health and genetic condition.  Being diagnosed with a brain tumor at 39 years old rocked me to my core and pulled most of the wool out from under me.  For the last while I spoke in terms of “Before July 18, 2011” and “After July 18, 2011” because July 18, 2011 is when Dr. F told me “There’s something there.”  And the rest is pretty much a blur.  I hope to figure out how to find myself again separate from my health.  I hope to find daily the joys and blessings in my life, which little by little, as time is going by and I’m finding it easier to do.  More Time.  I know time will make things easier, and things are getting a bit easier.  I see some semblance of normalcy coming back to my life and I’m grateful for that.

I wish…

I wish that I could speak with my Dad and get his advice and see his face and smile and have him hold my hand through this entire journey.  He passed away in 2004 and while my family has been incredible throughout this, I wish I could have a hug from my Dad.  My Mother has been my rock through this and I’m so thankful for her, but I wish I could hear my Dad’s voice or get a hug from him.

I dream…

I dream of what my future will be like and I try to not fear it. I try to look forward to my future with hope and anticipation.  Everyone tells me to be positive and while I know how vitally important that is, it’s a struggle for me sometimes.  I’m getting some good counseling and learning some incredible tools at self-care, there’s still quite a bit of fear and anxiety in my life. I dream about my husband, where he might be and when our lives will cross paths.  I dream about my children and what they will be like (if I’m blessed to have any – which I sure hope I do!), I dream about my nephews and their future. I dream about the medical field and what advances are coming for my 2 rare conditions. I dream about the life I thought I was going to have before July 18, 2011 and what of that life I can still have now moving forward.  I know my dreams must include faith and trust and hope and over time, I will be able to hone those skills and traits even more.

I AM…

I am Heather.  I am not my genetic condition.  I am a daughter, sister, Auntie, Friend.  I am part of an incredible family and have been blessed immensely by them.  I am part of a Faith that teaches me that Heaven knows of my existence and my Heavenly Father knows ME.  I am a Child of God and He knows ME and my journey and where I am and what I am going through.  When I have my next MRI or ultrasound medical procedure,  my Heavenly Father KNOWS me and what’s most crucial is I AM known to HIM.

3 things about me:
 
1).  I love the movie, Grease and can pretty much quote any part of the movie at any given scene.

2).  I love Friends and can also quote almost any scene of an episode of a show when it’s on.

3).  I have loved Dooney & Bourke for over 20 years and finally for my 40th birthday and for enduring through my “Summer Adventures” (as I refer to the surgeries last July and August) I treated myself to a Disneyland Dooney & Bourke bag.

Diagnosis and Treatment…

July 18, 2011 diagnosis of tumor

July 27, 2011 craniotomy (gangliocytoma 5 cm)

August 4, 2011 2nd craniotomy (CSF leak) – diagnosis of Lhermitte-duclos disease (Google it!)

October 2011 diagnosis of Cowden’s Syndrome (PTEN Hamartoma Tumor Syndrome).

Favorite quotes:  “If you live your life fully, you will die only once.  But if you are scared of every step, fear will kill you day after day.” – Paulo Coelho

“The key to success is to focus our conscious mind on things we desire not things we fear.” – Brian Tracy

You can contact Heather on Twitter https://twitter.com/ZHeatherChamp.

***

If you are a brain tumor patient, survivor, or care giver and would like to share your story, please contact me at memomuse@gmail.com.  If you read this post, you will find the template for the profile feature, as well as, the connection I have to brain tumors.

You can also find me on Twitter, especially on #braintumorthursday.  Leave me a message here in the comments  at my blog.  If you are on Twitter, be sure to put in the hash tag, “#braintumorthursday” to find support, information, and a whole community of amazing people doing their part to raise awareness and offer each other kindness and support.  You can also put in the hash tag “#BTSM” which means “brain tumor social media.”  You don’t have to have a Twitter account to get the information.  Just go to http://www.twitter.com and put in the two hash tags (#braintumorthursday and #btsm) to see the links to many websites.  You can also use a search engine, such as Goggle, to do this.

Here are several links to organizations, with a lot of other links and information about brain tumors.

Please feel free to add your link in a comment if it has to do with brain tumor support and information.  If you wish to get in  touch with Stephanie, you can reach her by leaving a comment on this blog and I will make sure she gets your message.  You can also email me at memomuse@gmail.com and I will forward the message to her.  Heather will be reading the comments here on this post, so give her some love.

Thank you for tuning in today and supporting #braintumorthursday.  We look forward to seeing you here at http://www.memomuse.wordpress.com every Thursday for #Brain Tumor Thursday and on Twitter every Thursday.  Thank you for your time.  BT Buddies has expressed that they would like to repost these profiles on their website too.  More information on that coming soon.  Tune in next Thursday.

Hope. Wish. Dream. Be.

~ memomuse

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17 thoughts on ““I AM Heather. I Am Not My Genetic Condition.”

  1. Yes,its indeed a good information.There are usually a rare case of genetic disorders but cant be ignored.There are some non-profit health organization who helps the people who are suffering from this disorders by giving them information and supports.

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      • BT Buddies seems to be a good organization out of England. Heather, let me know if the links on my blog are helpful ones. Also, feel free to drop in the link to any others you think should be added to that website link group.

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      • Is there a website that has links to all the organizations? It would be nice to direct people to one that has a lot of information and support, as well as, other links. These are the links have: https://memomuse.wordpress.com/brain-tumor-thursday/ (Go here to get the links)

        National Brain Tumor Society
        The American Brain Tumor Association
        Google Site – Tummor Warrior
        BT Buddies
        Your Eyes Are Your Heart
        It’s Just Benign
        Brain Tumour Foundation of Canada
        Kathy Wakile’s Website (Charity Work with National Brain Tumor Society)
        (See “Brain Tumor Thursday” tab at the top of my blog)

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  2. @anonymous: thx very much for sharing PTEN World’s link! It’s been SO helpful to me! there’s so much information, and the people there are so nice and respectful!!! some of the people in particular have gone out of their way to make me feel welcome. I don’t know who you are, but THANX SO MUCH for the info! very much appreciated. =)

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    • Be very careful @pten fighter. People aren’t out to help at that site, they are out for their own gain. There’s no support there to fight this condition, it’s just cookie cutter people sharing their stories and if you don’t do what they say they will CUT you.

      Share on a need to know basis. Trust me.

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  3. Pingback: Finally – the power of #braintumorthursday « hopeforheather

    • Heather, thank you for your post. You are an amazing voice for the BTSM community. Keep raising your voice and sharing your story. You inspire so many people. Thank you for promoting Brain Tumor Thursday on my blog. I really appreciate it. Cheers! I love your blog and how it is developing. You go girl.

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  4. Pingback: How GOOD it was for me to read this again! | hopeforheather

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