Sunday, November 29, 2009

What to buy for the 10 year brain surgery anniversary?

10 years ago this month, my husband and I were walking across the lovely campus of University of Evansville where he had been guest-preaching for a couple of days. He had been doing alot of that lately - preaching at retreats and conferences. I have always loved to hear him teach... As we walked through the crisp leaves, he would periodically bump into me, gently nudging me off the sidewalk. I light-heartedly joked with him about not being able to walk a straight line. After a few days of this, he finally realized it was because he couldn't see me in his peripheral vision.

We had already been through the partial removal of a brain tumor when he was in college, and radiation therapy a few years later when the tumor began to grow again. But he had never experienced symptoms like this.

2 weeks later we were in with his endocrinologist, then came the MRI, a visit to the neurologist, and a referral for a respected neurosurgeon in Charlottesville, Virginia. Soon we were sitting in his office at the Univ. of Virginia, and as he looked across the desk from us, we heard the words, "If you were my son, I wouldn't let you leave town without doing this surgery."

Our moms flew in with 18 month old Sarah Jane, our good friend, Ed, came to sit with us, and Todd's dad drove all night to be there for the surgery. My Aunt Linda lived in Charlottesville, and graciously opened her house to friends and family, so at least we had a home base and a place for a good night's sleep.

On one hand, we'd been through brain surgery before. It's not nearly as scary the 2nd time around. On the other hand, this was different....different symptoms, different size, different doctor and removal technique. I was confident that God had His hand on us, but it's just a scary scenario.

The first indication that something had gone wrong in surgery was when our time in the waiting room was much longer than we had been told. Several calls back to recovery and we finally were instructed to go wait in the hospital room he was being moved to. We went. And waited. Occasionally a nurse would stick her head in and reassure us that he was just a little groggy still.....but about 5 hours later, we were finally told we could see the ICU.

There were no answers really....just that they couldn't get his electrolytes balanced.....and I don't think he even opened his eyes for us that first night. They insisted he'd be better the next day. The next day they said to give it 3 days. After 3 days in ICU he was finally moved to a regular bed.

In the hospital, I sat through dozens of memory tests....those silly exams that neurologists and speech therapists do after you've had brain surgery:
1. Can you tell me where you are? Why are you here?
2. Can you tell me what day it is?
3. I'm going to tell you 4 words to remember....don't forget these, because I'm going to ask you again in a few minutes. Apple, Penny....
4. Who is the President of the United States?
5. Please take this piece of paper with your right hand, fold it in half, and place it in your lap.
6. Can you tell me those 4 words I asked you to remember?

I'm sure these are important for diagnostic reasons, but they are extremely frightening to a spouse who begins to realize that her husband isn't remembering anything. It didn't matter how many time we did these exact same tests, he didn't know what year it was. He wasn't sure where he was. I wanted to scream "APPLE! Penny!! How many times have your heard this?!" And he had no recollection that we had just found out 6 weeks prior that we were expecting our 2nd child. Those 10 days in the hospital I answered so many questions from him about the day or our location, or the doctor's instructions, that we made big signs on the walls with the day's date and other important information. None of it was sticking.

A speech therapist pulled me aside and told me I needed to request a neuropsych consult for the memory loss. The neurosurgeon assured me this was normal after a traumatic brain surgery, and a memory specialist wasn't necessary. Give it a few more days....then a few weeks....6 weeks and he should be back to normal....give it 3 months....

The next 9 months looked something like this:
  • Todd couldn't drive anywhere because he couldn't remember how to get from our house to the grocery store and back.
  • The tumor affected the sleep center of his brain, so he couldn't stay awake. He would be sitting knee to knee with a doctor or a student or friend and completely fall asleep right there.
  • He would wake up at 3 in the morning, just about every day, not having any idea what day it was or what he was forgetting to do, and wouldn't be able to get back to sleep.
  • The phone would ring, he would answer it and have a conversation, hang up, and not be able to tell me who he just talked with or what they discussed.
  • We made a notebook for him to read every day, sometimes several times a day, reminding him about what had happened, what the doctors told us, and why he couldn't remember anything.
And finally after about 9 months, the neurosurgeon in Virginia stopped taking my calls and sent us a letter wishing us the best of luck.

I am so thankful for the life of my husband. I'm thankful he didn't die during surgery. Thankful for how God has healed him in so many ways since then. Thankful for my husband's amazing faith and perseverance in spite of really crappy circumstances. I'm especially thankful because in Todd, I see a perfect picture of God's faithfulness to equip us with everything we need to do the things He's called us to.

He hasn't really ever recovered his short-term memory. He writes everything down. He still forgets who called on the phone. He's made good friends with the security guards at LLCC, who often would have to help him find his car in a sea of cars. But he is SO much better than he was! I think alot of people have no idea what God has brought him through, and what a hero he is for walking thru it with grace and strength. And on this 10th anniversay of his surgery, I just thought it appropriate to remember.


Missy said...

Wow....what an incredible story! Amazing what you all have been through. Thank God it all turned out alright!

Sara at Miller Moments: said...

We were there at RCC during this time...and I've always wondered what the long term outcome was. Thanks for sharing, Gretchen. You are one strong woman - and Praise Jesus that Todd is doing well!

bbrown said...

Amazing story. Thanks for sharing it.

fenelon said...

JF and I love your family so much and remember all of those scary things. We thank God for you 5 all the time and thank Him for allowing us to see Jesus through your family. We will forever pray and love you guys. You are an inspiration to so many and Jesus with skin.

The Williams Family Blog said...

wow. that is an amazing story from your life!! thanks so much for sharing! what an inspiration you both are!

Anonymous said...


This is amazing! I will never forget Todd apologizing for not remembering names. I will also never forget the small group with him sophomore year and finally being on the other side of the short-term memory!! You have an amazing husband!

Mamushsky World Headquarters said...

Gretchen - thank you for sharing. Amazing - beautiful - and, powerful. Love to you all.

Emily said...

Todd is definitely one of my heroes.
You and your daughters have been so blessed by him, even through the struggles.. and I KNOW God has given him an amazing wife to stay by his side through all these hardships.

Such a great example for me :)

I love you both so much.

AprylMay said...

I read this post through tears, remembering the courage and strength you guys had during this time. I also remember how humble and beautifully vulnerable you were. Sometimes I am jealous of you guys of how much you have in your life: great friends, great help, great faith. Then I remember all that you've been through that has deepened those relationships, deepened the trust you have in the Lord for Him to provide,deepened your faith. I am grateful for knowing you guys and your story, and I am a better me for it.

Jerry said...

How great the Lord is! How strong you are.. Gretchen! What an inspirational story. Thank You so much for sharing …I am still in tears!

Marilyn Kok said...

Gretchen--Thanks for telling about this. It's such a comfort to know that God has a plan and that it is a good plan and that He is making everything beautiful in its time (even if we can't fathom it from beginning to end). Here's a verse about our great and wonderful God, who never forgets: "Can a woman forget her nursing child and have no compassion on the son of her womb? Even these may forget, but I will not forget you. "Behold, I have inscribed you on the palms of My hands." Isaiah 49:15-16