Posted in Brain Tumor, Cancer, Health, Helpless

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.

Posted in Health, Natalie Grant, Tumor

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.

Posted in Battle, calling, Grief, Health, Hope

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.”

Posted in Guidance, Healing, Health, perseverance, Tumor

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.

Posted in Community, Health, Love, Prayer, Providence, Tumor, Worship

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

Posted in Health, Tumor

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.”

Posted in Family, Health, Holy Week, Mommy, Support, Thankful, Trust, Tumor, Unexpected

Here We Go Again.

In December I had an appointment with my neurosurgeon in Charlotte and since it was the last day of classes here and was a 7 hour drive, I decided to cancel it and find a neurosurgeon here in Gainesville.  I didn’t make this decision lightly and I looked up all sorts of things about the awesome program here and I asked around to a number of people.  I saw my new neurosurgeon for the first time on Valentine’s Day (ha!).  He ordered an MRI to be done the Monday after our spring break trip to Costa Rica (March 11th).  On Tuesday, March 19th while Mike and I ate lunch with Evy, the nurse called and said that the doctor recommended surgery.  She then set an appointment for me to talk to him about this for today, March 28th.

Mike and I of course called our parents.  I didn’t want to say anything about this before we knew anything, but needless to say, we’ve been pretty distracted this past week and because I try to be a reasonably transparent person, it was hard to preach on Palm Sunday or for either of us to function without a twinge of something always in the background.  My parents came to visit last night so that Mom could go with us to the appointment and Dad being the great MacMac that he is, could hang out with the kids this morning since they’re on spring break.

Three years have passed since the first surgery.  To review, my doctor in Charlotte removed what he could of the tumor but left a strip near the motor cortex of the brain.  The type of tumor I have is an oligodendroglioma and very thankfully it’s a grade II (low grade).  At the time, research and common practice said that you take a watch and wait perspective and treat symptoms.  Now, research says that you resect as much as you can of the tumor so that it does not increase in grade.  They will use computer guidance to make sure that they are as precise as possible in removing as much as they can of the tumor that remains.  All of the risks associated with brain surgery are still at play here (duh.), but even more than that, because this is on my motor cortex, there could be temporary weakness in my right arm, hand and face.  As he said, scenario A is much like the first surgery – I come in on Friday and have surgery, I go home on Sunday, and I go back to work on Wednesday (this is also because I’m a crazy person that likes to work – yes, I know).  Scenario B is I go into surgery on Friday, hopefully still leave on Sunday depending on some things, go back to work in two weeks, and then possibly do physical therapy and rehab for a month.  If removing as much of the tumor as possible gives me a higher means of this not turning into something worse, I’m willing to risk either scenario.  The doctor’s suggestion is to take the “earliest elective opportunity” to do the surgery.

I’ve decided to do the surgery in May – most likely either May 10th or May 17th.  What does this mean for our family?  The kids were 1 and just turning 3 when the first surgery happened so they thought Mommy was on a trip of some sort.  They’re 4 and 5 now so we’ll be handling things a little differently.  They’ll still be in school so that should help.  I am blessed with an incredible extended family….and in essence I consider y’all a part of that as well.  Mike has been an absolute rock in all of this and I can’t begin to thank him for living out the weight of our vows every day.  The irony of asking him today – do you want to have the surgery around our 11th anniversary (May 11th) or around your 34th birthday (May 16th)?  I know that God is with us and will provide – whether that’s within the surgery, recovery, sanity, financially or us trying to squeeze in two more days at Disney before June 6th when our passes expire =0).  I’m also looking at the beginning of May so that I can be present for all of the end of semester fun, but before things ramp back up for summer.  I didn’t plan on a surgery during my first year here in Gainesville, but I know that there’s an amazing staff, student leaders and board here and we’ll be good to go.  As always, I’m pretty open with questions – so if you have one, ask me.  I also tend to use the blog to process and answer things as I can. (Don’t be afraid.  I’m not “broken” or an invalid, and I’m still the same person.  Human as can be, but trying to figure it out….so ask, don’t just wonder.)

As soon as I get the actual date of the surgery, I’ll definitely post it and I will hugely appreciate all of your prayers!

So all that to say, I don’t have any big actual blog “reflection” tonight.  We just completed the Maundy Thursday service and I’m pretty spent at this point, which I guess is just about right with Good Friday coming tomorrow.  I am increasingly struck this Easter season that there’s no fast forward button between Palm Sunday with the Hosannas and Easter.  I also appreciated a song that my parent’s sent me when I told them this last week.  It’s Tenth Avenue North’s “Worn.”  Hope that during this Holy Week we are reminded of our redemption, peace and hope in Christ in the midst of the sometimes dark despair.

For those visual people out there that want to pray over an image….rock on.

Image

Posted in Community, Easter, Faith, Health, Holy Week, Miracle, Prayer, Support

Miraculous

ImageI got a phone call on Friday after a long week of good, fun, tiring and yet rewarding work.  It was not a number that I or my phone recognized and I’m usually tempted to let those go to voice mail since you never know if it’s a survey or a wrong number or who knows.  But for once, I didn’t.  It was a student who had something to give me.  A pastor of hers knew that she was a student at Winthrop so she wanted to pass something along to me.  That’s all she really said.  So I had no idea what this could be.

When she stopped by Wesley, she handed me a beautifully colored picture.  I love rainbows and bright colorful things so I liked the picture instantly.  She then said that it was a Mandala and as the picture says on the back – it’s a contemplative practice.  Rev. Annie Edwards who I don’t know, created this for me during my brain surgery in 2010.  She started it at 11:45 am and finished it at 1:30 pm – truly roughly the time of my surgery.  As she writes on the back, “This was done for you during your surgery, with love and compassion.  Your Dad is my friend.”

It’s beautiful and something I’ll treasure.  As are the prayer shawls, books, pictures, everything that has been passed along to me that I can share with others.

I am admittedly sometimes flippant about the surgery and I in some ways am pretty successful at brushing it off.  In my day to day life – I don’t walk around with a sign around my neck that mentions it.  When I get an invitation to the survivor’s dinner for Relay for Life, I am more often than not – surprised.  But I think, as is often the case with the things that we are flippant about, most of my bravado comes from a place that is truly grateful and humbled by the outpouring of love and support – so much so that I don’t know if I can express how much it means or how much even when it’s not at the forefront of my mind – that I depend and rely on the prayers and the Spirit of mercy and grace that I feel ever present.

It’s not something that I’m afraid to talk about, but it is something that’s deeply personal.  So yes, I keep it on the About Me part of the blog – though I’ve debated that – and it becomes a part of the fabric of my life.  Not definitive of all of who I am, but yes a defining moment….among many.

One of the things that struck me on Friday was yes, the picture, but also what the girl from Winthrop who I’ve never met, said to me as she delivered.  She talked about what a miracle it is.  I asked her what she meant and she said, “You.  It’s miraculous.”  No, this is not a big head moment.  I’m not slapping myself on the back. But part of me did want to slap my forehead at the “Doh!” moment.  I don’t know about you but I think it’s easier for me to see the miracles around me – my students, Spring, healing of friends and family, the birth of a child – but it’s harder to see ourselves in that way.  I don’t know if we can even wrap our minds around that.  But we can sure as heck be grateful.  And hugely grateful at that.  For the prayers of so many, for the love that encircles us, and for the hope of the resurrection.

During this Holy Week, my hope is that I not rush straight to the resurrection but that I take time to attend to the twists and turns between Palm Sunday to Maundy Thursday and that I’m attentive to all that is the darkness and despair of Good Friday because we all have felt and walked and witnessed times like that.  And that when I hear the Good News of the resurrection on Easter morning that I feel both the impossibility and the miraculous and the ever present and real hope and promise that it offers.  May we know and see the miracles in each of our lives, our communities and the world around us and may we claim and treasure them!

 

**  Dad’s reflection on this time period – Holy Saturday Redux – http://wtmcclendon.wordpress.com/2010/06/16/holy-saturday-redux/  I think about it around this time of year…and I appreciate his honesty.

Posted in Advent, Balance, Busy-ness, Centering, Devotional Life, Faith, Health, New Years, Tune Up

Time for a Tune Up

I’m sitting at the car dealership where there’s a computer kiosk, right beside a vending machine selling 5 Hour Energy Drinks.  Really.  In a car dealership you need 5 hour energy drinks?  Maybe so.  I don’t know if you would like to drink one in a waiting room though.

My car has needed an oil change for the longest time.  It’s one of those new kinds that instead of looking at the lovely sticker that the last oil change put on your car saying what mile to bring it back on, it tells you you’ve got 15% oil life left, 10% and so on.  Let’s just say I’m way over after the 0% and when you do that it flashes at you at all times this little yellow wrench.  You would think that the little wrench would have been annoying enough that it would have spurred me on to take the car in.  Quite the contrary.  In some ways it was a fun game to see how long it would take me to notice.  Especially on a drive to Columbia, there were many miles that I didn’t notice and then out of the corner of my eye I would think, what is that thing flashing and lo and behold I would remember the wrench.

Yes, it would inspire some guilt and I would think gosh, I am really stinking at getting things done right now but then I would remind myself it’s the end of the semester, things are crazy, a break is coming.

I don’t know about you but it seems like that’s a habit in my life.  There are times when I push through the busy and just keep going well past the yellow light of the wrench blinking.  Last night I began praying before I went to sleep and in my mind I started saying the words to the blessing I often pray when sharing a meal with the students.  That’s not a good sign folks.  When what naturally comes out is just the pattern and is not so much the heart, that gives me pause.

But is it a pause that I will do something about?  I don’t know.

You see, I would like to think that if my prayer life or my family life or my work life or my scale of sanity had a blinking yellow wrench every time I woke up to show me that I need to get a tune up, I would actually do something about it.  I would right the wrong or at least make an intentional effort.  You would think this, right?

But then again, I have gone hundreds of miles with this blinking light and as much as I feel guilty when others drive my car or if someone sees the blinking light, it hasn’t forced me to remedy it.  I may know that it needs fixing, others may see that it needs fixing, but if I don’t make the choice to do something about it, than it languishes in it’s oil-less misery getting worse and worse with more and more damage.

I think there are seasons where we wonder, is this the time?  Is this when I should make the change?  Is this the moment to make some new habits?

And then – at least I – think, well it’s not New Years and it’s not my birthday and it’s not some milestone moment.  Am I really going to do whatever this Is at least 6-8 times to actually make it a habit?  Is this a good enough moment?  Is it a dire enough situation?

When I first talked to my neurosurgeon about the brain tumor, one of the perhaps idiotic things that I asked, was if taking my vitamins now and exercising now what make a difference.  I’m not saying those things would have made any difference in the grand scheme of things but I look back at the irony of that question, like – can I get a do over and actually do things “right” and that make everything better?

We don’t do things like take seriously our devotional and prayer life, be fully present with our kids and treasure our spouse, and try to live as an example of the love of Christ instead of just a harried, frustrated, tired person, just because it’s “right” or it’s going to be the cure all.  We do these things because they help to make as whole.  God doesn’t command things just for the heck of it or so that we can walk around with halos.  God commands things because God wants the best for us and wants to save us as much heartache and hurt as possible.  The Honda company doesn’t just have the wrench light up for no reason, but because it’s something that I need to deal with NOW and not 1,000 miles later.

So what are some things that we need  to take seriously?  Is our check engine light on?  Or is it just an oil change that is needed?  What are some areas that we see as things that need our attention?

The awesome thing is that we don’t do all the work by ourselves.  Just like, I’m not the one in the shop working on my car right now, I’m also not the one who has to try to “fix” my life all by myself.  It’s not even really about fixing.  It’s about being open to God and God’s leading and opening our eyes to our growing edges.  This is not because God loves us any less or that anything can separate us from the love of God, because we know that’s not true, but it’s so that we are firing on all cylinders and are ready for whatever life may throw at us.

Oh my all of these cars references are killing me.  One more though – let us this day, this Advent, not just waiting for New Year’s, let the Great Mechanic open us up and give us the tune up that we need.  Let us be open to that.  Let us be ready for that.  Let us take it seriously and be ready.  Even in the midst of the hustle and bustle, there are times when we need to take a breath and pause things for a bit so that we can continue on in the most full and abundant way that we can.