Survival Mode

I had coffee with a friend last Thursday night, and we both intentionally want the friendship to go deeper than just our kids play together, so that’s why we made it a no kid time coffee date. Two-thirds of the way through the conversation she asked me, and I’m paraphrasing here, if I had processed the surgery? I stopped before answering because I want to be honest in our burgeoning friendship, and I said no. Not entirely. That stayed with me throughout the entire weekend. I was shocked at the strong, protective feelings her initial question evoked and there was a definite shift in the conversation.

Mike and I celebrated a long overdue date night. We had received a gift card for Mark’s Prime, a fancy place in Gainesville (thanks Brittany and Brian!) and we splurged ordering appetizers, steak, and dessert. (See Mom I do make an effort to eat red meat the week before chemo!) Then we watched a movie just right for us. Saturday was spent in typical fashion, Evy talking to Mr. Sun on our way to Krispy Kreme, Enoch threatening to put Mommy and Daddy in time out if we yelled any louder at the football game. Then Sunday it was a full day at Gator Wesley.

I didn’t consciously think about my friend’s question until they started my IV for the contrast in the MRI this morning.

Then left with no phone or book or students or laundry or things that need cleaning or ways to procrastinate, I was left alone and perfectly still with my thoughts for a whole 45 minutes. I’ve had longer MRI’s, but this FELT longer. I was trying to pray. To be present. To make this time somehow “productive.” To fight off the occasional panic attack. But the question remained.

And then fast forward to the doctor’s appointment. The oncologist’s resident came in first to ask me a few questions. I was struck by two things. The first the only person to have cancer in my family was my paternal grandfather (prostate cancer). After my grandmother died of a heart attack, the results came back the next day that she had leukemia. Now, don’t get me wrong, it’s not that we don’t have our fair share of health problems, diabetes to the extreme on Dad’s side and cholesterol and extreme heart disease on my mom’s. But growing up, cancer was never something we worried about. My grandfather was given 6 months to live when Dad was a little boy and then he lived until I was a junior in college.

The second was how different this recovery was to my first surgery. They were DRAMATICALLY different. In 2010, I came out of surgery completely normal (or as normal as I could be…). The surgery in 2010 I had no deficits, except recalling some names. I woke up in ICU talking and thinking clearly, and I went back to work a week later, ready to be back. I experienced the same pre-op that I had before, but waking up in the recovery room unable to speak but fully understanding all that was happening around me and to me….(what I was experiencing was apraxia, which I define below)…and the nurse(s) wondering aloud what was wrong with me, they had never seen someone come out of brain surgery like this…and my people pleasing nature coming out for sure…me wondering how to communicate to them about my pain needs…wondering all the time if this was permanent…the doctor checking in because the nurses apparently called him…me trying to communicate with my eyes the helplessness I felt…and sobbing when I couldn’t communicate with the doctor. That’s the last time I cried in the hospital. I guess I flipped a switch. Moving into survival mode.

I was reading back through my “notes” before the MRI. Iphones have these things called “notes” that are an app where you can type directly into it. At the end of May/beginning of June this was my preferred method of conversing because it was still hard for me to speak at that time. Somehow it was easier for me to order the words if I typed them. In the midst of “notes” of song lyrics, movies to watch, quotes from speakers at the UMCMA conference, benedictions/prayers that I had to type up to say them, notes from our staff retreat in NYC, was this hidden gem. May 24, 2013, exactly two weeks after the surgery, I typed, “The quickness with which I speak comes back?” I imagine this was thrust in the face of Mike at some point, as I gathered the courage for days to ask that question.

I ended the work day with a meeting of a newly formed clergywomen’s covenant group. I could barely articulate to them the events of the day. They had seen the facebook post so they knew the results of the MRI. A fellow clergywoman, I had not met before today, at the end of our conversation, called me a beautiful person and I answered honestly that I don’t feel that way now. I repeated my answer, but I was unable to add or articulate the words that would disguise my bruised soul. So it was left hanging out there.

So on my way I called Mike debating if I should go home or back to Wesley before freshman small group. And he said that he had been feeling the same way. He didn’t understand it either. He said he had walked around the neighborhood with the kids and that made him feel better, to get out the excess energy. And he encouraged me to do a blog, because that’s the way I process. Why are we not feeling relief/excitement/joy at the good news of the MRI results? I don’t know. Maybe we never turned off survival mode. Maybe during “recovery” we never quite recovered. Maybe it takes time. My mom texted me tonight, “Ask Jesus to show you where he was” in the post-op. And that may lead to an entirely different blog post.

I’m glad for the friend who asked the question. Because she, without her knowing, set me off on a journey towards healing….

*** Apraxia (from Greek praxis, an act, work, or deed[1]) is characterized by loss of the ability to execute or carry out learned purposeful movements,[2] despite having the desire and the physical ability to perform the movements. It is a disorder of motor planning, which may be acquired or developmental, but is not caused by incoordination, sensory loss, or failure to comprehend simple commands (which can be tested by asking the person to recognize the correct movement from a series). It is caused by damage to specific areas of the cerebrum.

Hurricane

I have my first MRI post-surgery tomorrow at 9 am. The doctor is going to read it at our appointment at 1 pm. I’m not expecting that the tumor will grow back overnight. Not by any means. And I’m sure the doctor’s visit will be anticlimactic – but only in a GREAT, AWESOME, GOD way.

This song “Hurricane” by Natalie Grant has really struck me lately.

Bald is Beautiful?

photo (1)

I took my hat off going through security at the airport (they made me) and my hat flew off at the beach earlier today so I’m naming the awkwardness of the patchiness of my head. It still hasn’t begun to grow back and they’re unsure whether it will grow back during chemo, if it will ever grow back. But we pray on. I never thought I would be saying a prayer about my hair.

Little Hairs

I’m crying alone at my desk with the door closed because it’s been a really cruddy day.  And I can’t go anywhere without seeing these little hairs everywhere.  I’m frustrated.  And I want to go on a date with Mike and stop thinking about these things.  He’s promised me to shave my hair completely off tonight so I won’t see the little hairs anymore.  I may be vain.  But I liked my hair.  I was sort of attached to it.  Or it was to me any way.

Bald is beautiful.  It will grow back.  This too shall pass.  It’s only for six weeks.  There’s people worse off than you.  No one is unaffected by cancer.

But I want to scream.

And break stuff.

Then I listen to The Call by Regina Spektor and the tears are flowing freely down my face.  I first heard the song on The Chronicles of Narnia:  Prince Caspian soundtrack.  I really relate to the beginning of the song, “It started out as a feeling/Which then grew into a hope/Which then turned into a quiet thought/Which then turned into a quiet word
/And then that word grew louder and louder/’Til it was a battle cry…”

http://www.youtube.com/watch?v=WY0QcSQf_mc

Thanks for letting me vent.  I’ve stopped crying.  I will hold fast to the truth of John 16:33, “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

Halfway Point

So I’m halfway through the radiation treatments and I have had very little side effects – occasional nausea, hair loss, and headaches.  But I’ve got some great wigs in a variety of colors!

This song came on the radio, as I was heading into radiation.  The chorus

“You’re the one who conquers giants
You’re the one who calls out kings
You shut the mouths of lions
You tell the dead to breathe
You’re the one who walks through fire
You take the orphan’s hand
You are the one Messiah
You are I am
You are I am”

We certainly serve an audacious God.

http://www.youtube.com/watch?v=2JI4CPfuLW0

The lectionary text for this past week, shows Jesus casting out demons.  I think of the Florence and the Machine song “Shake it Off” with the lyrics “Every demon wants his pound of flesh….And it’s hard to dance with a devil on your back…So shake him off”

http://www.youtube.com/watch?v=L0cjxmMDNFo

We serve an audacious God.  The Upper Room devotional had this verse from Psalm 62:8 this morning, “Trust in [God] at all times, you people; pour out your hearts to him, for God is our refuge.”  These are my reminders that God is faithful to deliver and no matter how my foolish pride may get in the way, I can always pour out my heart to God.

LOVE – Songs of my Soul for Now

In an hour I go to the hospital for my second brain surgery and it feels super surreal to write that.  I wanted to post a quick blog before I go to say thank you to everyone who is praying and who has been supporting us.  We can feel your love and the community surrounding us!

I spent this past week with 30+ students from Gator Wesley touring around the state of Florida doing our Spring Tour – singing, dancing, rocking out, reading scripture and so much more.  There’s a song that they sing in one of the sets (and I love the mash up that they do) called “Set a Fire” by United Pursuit Band and one of the lines says, “There’s no place I’d rather be…but here in Your love…”  I’ve felt that from each of you.

Campus ministry is this crazy special place where things intersect – struggles, fears, hopes, dreams, silly Vine videos, lots of laughter, and experiences that both challenge and inspire. The students this week have inspired the heck out of me.  I’ve been ministered to in their music and their passion and their faith, and even more than that in their zest for life!  There weren’t many stops during this tour where I didn’t feel moved in some way and though I couldn’t figure out how to share that with them without becoming a blubbering hot mess, I want to let them know how special this week was for me.  Even the trampolines.  And the cold water of the spring when knocked off a raft.

Two of the songs that they’ve been singing are two favorites of mine that I’ve been holding dear over the past few weeks.  They didn’t know that when they picked the songs how much they have been resonating with me and yet again, I know that God is weaving all of this together in mighty ways.  The first is Meredith Andrews’ “Not for a Moment.”

And the second is by an amazing band that we hosted here at Gator Wesley called Bellarive.  It’s their song, “Taste of Eternity.”

These have been the songs of my heart.  Worship taps into a place that breaks down the barriers that we place.  It digs in between the walls that we’ve built to protect ourselves and the layers of stress and muck that this world provides.  May the scales on our hearts and our eyes be removed that we may see God more clearly and know God more fully, as God draws us to God’s self.  I know that no matter what happens today, I know that I am God’s and God is ever in the midst working things together for good.

Y’all have humbled me speechless with all of your texts, facebook messages, tweets, and cards and I hope that each of you feels the love, hugs, fist pumps, and high fives that we have for you!  Thanks for being on this journey with me.

Much love!

Cheers to a new haircut!

Grace and Peace,

Narcie

Surgery Date

It’s official.

Surgery will be on May 10th and pre-op on May 3rd.

Thanks for y’all’s prayers, your comments on the blog, your comments on facebook and all of the messages!  Much love to each of you.

All of us greatly appreciate it.  As I know more, I’ll let you know.  As I process more, I’ll try to post.  The in between time makes this a bit surreal but I know that God is with us.  I know there are quotes out there like “Never trust quotes posted on the internet” – Abraham Lincoln, and I don’t know if this one is completely true or not, but as my uncle Carlee would quote John Wesley saying, “The best of all is, God is with us.”