Re-Defining Normal

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By Genie Alice Causey

geniealice.jpgNate Causey of Tupelo, Miss., was treated for TMJ and tension headaches before doctors found the real cause. At age 34, he was diagnosed with a central neurocytoma on May 7, 2010. Unexpected and rare complications left him with several disabilities, but with hard work and determination, Nate is beating the odds every day.

His wife, Genie Alice, wants to share her experiences as a caregiver to encourage others no matter where they are in the process of fighting cancer.

Many dream of a "normal" life -- a happy marriage, a couple of kids, a yard and a picket fence.

I met Nate shortly after I graduated from college and fell hard. I had never met anyone so kind, smart and good-looking! He eventually proposed, and we had a perfect wedding. We were on the road to a fabulous, "normal" life together.

A few months into the marriage, while I was busy redecorating his "man cave," he started having neck pain. Our family doctor treated him for tension headaches. Then vision problems started, and he had an MRI.

Devastating news

The tech, who looked like she had seen a ghost, sent us back to the opthalmologist. He broke the devastating news that Nate had a large brain tumor.

Nate had surgery at our local hospital. After a short recovery, he went to MD Anderson for a second opinion. We met Dr. Jeffrey Weinberg, who told us that while Nate's tumor was benign, it was way too big -- he needed another surgery soon.

We came home to talk and pray about it, but knew Dr. Weinberg was right. The vision problems and neck pain had already returned. 

On June 29, 2010, Nate had a 17-hour surgery.

In the wee hours of the next morning, Dr. Weinberg told us the surgery went well and that Nate was in ICU waking up. Our family came in, kissed him good night and returned to their hotel.

Unexpected complications
While the nurses were trying to gently coax him awake, he suddenly stiffened and gripped my hand so tightly that I thought it was going to break. I had to pry it off so I could get out of the way of the nurses and doctors who were in overdrive trying to save his life. Unexpected complications had caused his brain to bleed.

The next days were a blur. He was in and out of the OR with his life hanging in the balance. Eventually, Dr. Weinberg put Nate in a medical coma to protect his brain from further damage. When Nate finally woke up he couldn't move or speak.

The only things that got me through those days were Dr. Weinberg, who we trusted with his life, our faith in God and our family.

Weeks later when Nate started moving, we saw that his right side was paralyzed, and he was diagnosed with severe speech and language disorders.

Overcoming obstacles
After seven brain surgeries, a stint at a rehab hospital and finally outpatient rehab at home, Nate has come so far. He's walking, learning to use his right side, working on his memory and learning to communicate.

Those days at MD Anderson were hard. But sometimes being home is even harder. In the hospital, there's the comfort of having your "dream team" to help you through. At home, it's up to you. In the hospital, everyone is fighting their own battle and there's comfort in making friends in the waiting room. At home, friends and family are living "normal" lives and yours is forever changed.

I imagine the realization that life may not ever be normal again is common among survivors and caregivers. Early on, as much as I hate to admit it, I sometimes felt like "my" Nate had been taken away. Even though he was still right in front of me, my "rock" was now entirely dependent on me.

I was reminded of Jeremiah 29:11: "For I know the plans I have for you, declares the Lord, plans for good and not for evil, to give you a future and a hope."

A new purpose
Our life may not look like everyone else's, but it is still so beautiful. Admittedly, I feel a twinge of jealousy when my friends have babies. Nate and I had planned to start a family soon. But that's their purpose right now, not mine. My purpose, for now, is to be the best caregiver and wife I can be.

Our relationship is different than in my dreams, but we are more in love than ever. Nate is still kind, compassionate, funny, hard working and good-looking!

I want to encourage others. Your life is undoubtedly different now, but it can still be perfect, even if it's not "normal." You may just have to tweak your definition.

Helpful links:
This is a link to a song by Laura Story - it really touched my heart the first time I heard it.

This is a link to more information about the BrainSuite technology that Dr. Weinberg used for Nate. We were so thankful for technology like this - it made it possible to remove more of the tumor than could have ever been without it.

This is a link to more information about Aphasia -one of the speech/language disorders Nate has.


thank you for sharing your strory! It is a true blessing from GOD you were placed in Dr. Weinberg's care -- he is the ultimate brain surgeon and also handled the procedure on my hubby's brain! MD Anderson is amazing and I am so happy to get to read everyone's stories and will be posting our journey soon as well -- I will continue to keep you and your hubby in prayers -- My Husband was also 34 when he was doagnosed - and to this day is defying all odds! GOD speed and GOD bless you both!! XO Lyndie My blog:

I'm so happy that your husband had the good fortune to be under the care of Jeff Weinberg. Jeff is a member of my personal dream team - the man with the golden hands! I have ultimate trust in his knowledge, decisions and surgical skills. I'm 2 years and 3 months out of a surgery to remove an oligodendroglioma from the left frontal lobe of my brain and I'm doing very well. I wish you and your husband all the very best and hope for his continued recovery.

Thank you, Genie, for sharing your story. I am reminded of the saying that "Real life happens in the interruptions!" Your life has been interrupted and re-aligned and you are finding new focus and perspective in the middle of that. Thank you for sharing something of the trials as well as the triumphs. Caregivers for people with chronic conditions, disabilities and/or terminal illnesses can be champions but there is inevitably grief in the process. I hope you've found a support group or counselor where you can openly vent about the challenges and be helped in your efforts to achieve stability and a realistically positive outlook. Bless you for sharing.

Linda Watson

Thank y'all so much! Dr. Weinberg is amazing, isn't he! :)

I appreciate the kind words. I wish you both the very best as well. Thanks for reading!

I will keep you both in my prayers as well!!

My blog (that I JUST started!!)

Can't wait to check yours out Lyndie!!

Oh Genie Alice, what a blessing! Thank you for sharing this. Aren't we all shocked,scared,and so many other feelings when life doesn't go as "planned"!!??
I thank God that He is always there to pull us through, and that, when we are willing, we will learn what He has planned for our "real life"! And I can tell you, from experience, that "real life"... is more blessed,and peaceful than any "planned" life we could have ever imagined.

You and Nate have been in our prayers since before that first surgery, and continue to be. I have prayed from the beginning for God to give Nate complete healing. And I realize, that wasn't the right thing to pray. But I will continue to pray for healing, but more importantly, Gods will. Because as I said, even though we don't always understand His ways, they are MUCH better than ours. So, as with many other things in my life,again,(when will I learn!!) I give this to God, and ask Him to use it to glorify Himself, and honor Him.

And you have a very good start with this first blog, doing just that!
Congratulations for learning young! Some of us, it takes a long time. May God bless you and Nate, and may you touch so many people for Him with your story.
So proud to call you two friends:)

Love you.
Jerry and Delba

Genie Alice, Thanks for the information about Nate and what is happening in your life. I get updates from Gloria, but it has been a while. I started praying for you and Nate and your families as soon as I heard about his tumor. I still do. WIshing you both all the best and happy life together.

couldn't have said it better myself, as a caregiver! You do a wonderful job and Nate is blessed more than he could know. Hang in there, you will be repaid and then some! God is in control! Luv u all, Anita

The brain is a funny thing isn't it..
I was lucky to find MD Anderson after a half-a-- attempt at a local hospital.
The Brain and Spine Center are second to none..
Like you, I would like just to live down there until this is all over.
My wife has GBM4.
Like you, I hate coming home and having to wait 8 weeks to go back/
If it were up to me, I'd have her scanned every Saturday night at MDA!
The radiation was worse than the cancer.
Radiation necrosis is for real...I want everyone to know that!
My wife is in 3 different therapy classes as we speak, trying to get some cognitive skills back..
"lowly and slowly"!!!

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