Category: Tumor

Posted in Community, Faith, God's Providence, Grace, Healing, Health, Thankful, Theodicy, Tumor

Update on that Spongy thing inside my Noggin’

Posted on by narciejeter

  I am completely slacking on blogs right now which breaks all the rules of regular blogging.  Sorry about that!  I’ll catch up soon.  Right now I’m at a great conference and have tried to be as fully invested in it as possible, but there has been a part of me distracted.  Some of you that began following this blog when I started writing after finding out that I had a brain tumor and you walked with me through that journey and the recovery and even though the blog has become a little bit something different, I do still want to give you an update on that good ole brain of mine because I believe that this community of support has been invaluable and really a holy presence in my life and I can’t imagine my life without your prayer and support.

I have been doing 3 month MRI and neurosurgeon check ups over the past year.  For the most part, I try to keep moving with life and I give a sincere and concerted effort not to let these worries and fears rule over my life.  Then comes the time when I get the envelope from Carolina Spine and Neurosurgery in the mail with all of my appointment times and as Mike and I see it, I can feel the background stress and tension in me and those I love.  The unknown is so completely…humbling…scary…difficult.  There’s so much to unpack there but that would be an incredibly long blog and mine are already probably way too long.

Last week I went to my (I don’t really care to remember how many its been now) whatevereth MRI and the techs were asking how I was doing and what I was there for, all that good stuff and I told them my hope that maybe this was the visit where I could be increased to every 6 months or every year instead of every 3 months.

On Monday I met with the neurosurgeon and he said that it was the radiologist’s opinion that the part of the tumor still up there in brain/motor cortex land may have grown slightly but that it was very slight.  His opinion was that he didn’t see a change and disagreed with the radiologist.  We then had a lovely back and forth where I looked at the comparison MRI’s myself and tried to understand and that I got a chance to ask some hard questions.  Since Mike was not with me, I could ask some of the things that I want to know and would like to understand but that I don’t want to alarm, worry or hurt someone else by them hearing the questions or the answers.  Does that make sense?

So even though it was not my most favorite news in the world, I was okay.  My amazing doctor said he was going to take the tumor to the tumor board for them to decide if it had grown or not.  I called Mike and my parents on the way home and was okay.

Primarily I was okay because I was leaving the next morning for a conference and I just didn’t have the emotional energy or the whatever to process it.

Yesterday afternoon while I was in a workshop, the doctor left a message and when I hear him say his name I immediately get a little freaked out on the inside even though he’s a fabulous doctor – like fabulous – but it’s just anxiety producing.  But then he says an AMAZING thing – the tumor board doesn’t see any change.  AND because this place on my lovely brain has stayed consistent this year, I get to stretch the time between MRI’s to 6 months!!!!!!!!!!!!!  (I could probably mash exclamation points for a while on that one.)  That may seem like a little thing, but it’s such an act of hope and grace and peace to me.

And though I didn’t shed a tear on Monday, I couldn’t stop crying off and on yesterday evening.  Is that crazy?  The bad news – I take it and I’m like let’s do this thing.  The good news – I’m a basketcase.  In talking with a dear friend and colleague about this last night I told her as I was trying to process and express my layers of feelings that I really needed to blog about this.  For some odd, crazy reason this is how I started this journey – blogging.  And it has been such a healing and cathartic piece or even peace for me.  There’s something about putting it out there in writing and narrative that makes it something that I feel a little more grounded in.  I guess we each have our mediums – whether it’s walking outside or making pottery or playing baseball or journaling.  And I am thankful for this one.

In the midst of this I know that there are those walking incredibly hard and deep and heartbreaking journeys right now.  I think of the family members that are living this reality right now and the friends and loved ones who have faced challenges that I know not of.  Please do lift up in prayer those who are in the midst of the struggle of the unknown and in this thin place where anger and fear and sadness and grief and life and death and joy and pain are so close to the surface at times.  Each of us walks this journey at times.

And we’re not alone.

I have seen Christ in the colleagues that I’ve shared with here and that continue to uplift and inspire and challenge and hold me accountable.  I have seen Christ in my family who continue to battle for me.  I have seen Christ in the countless people that continue to tell me they’re praying for me or those that just give me space to be…and to feel…and to just cry or laugh or talk about it or not talk about it.  I have seen Christ when I’m by myself and I am vulnerable and just laid bare as a child of God.  Although there is no doubt that I would not have chosen for this piece of the puzzle of life, I have felt Christ’s Spirit and promise more tangibly and have felt the Body of Christ more profoundly and genuine than I have felt in my life.

I am grateful for a community of people that I can keep it real with on the sad days and the angry days and the joyous days and the rock and roll days.  I am grateful for a Savior who continues to be that Great Redeemer and Strong Protector and just that Amazing Grace who support us and girds us up in mighty, mighty ways.

So that’s my brain.

And one of the awesome things – 6 MONTHS!!!!!

Grace and peace to all of you.  I am gratefu for you all.

Posted in Death, Faith, Fear, God's Providence, Grace, Healing, Hope, Jesus, Methodism, Music, Spirit, Trust, Tumor, United Methodist Church

Tears

Posted on by narciejeter

Annual Conference this year was both a whirlwind and a marathon.  Busy-ness or business was everywhere and it was both challenging and inspiring, a call to action and a test of will as we waited/persevered to the end.

I’m starting to think I’ve become more and more emotional as I grow older.  There were several times over this past week when I felt tears come to my eyes.  Some of those times were times of happiness and thanksgiving – feeling the Spirit move as Telley preached at Annual Conference, Josh’s ordination, the prayerful and powerful way our South Carolina delegation laid hands on Dad and prayed over him after unanimously deciding he would be our episcopal nominee.  There were so many great moments from the teaching to the preaching to the videos shared like this:

It was also a great time to camp out for Imagine No Malaria and to train some amazing Students In Mission (SIM) to commit their summers to being in mission = ministry with.  Much to be joyful about!

Sometimes the tears were both thankful and a little bit of just overwhelming gratitude.  It was surreal being back at Annual Conference this year.  Last year, I came in for two days right before the brain surgery and although some probably thought I was insane for coming, for me, it was my church.  The conference – both lay and clergy – are our people and that’s where we as a body share our joys and concerns.  I didn’t realize going into this how much being back at conference would bring up for me in terms of last year’s struggle.

We sang the song, “In Christ Alone” during the opening worship and those words and all of us a large body singing together was such a powerful witness and testimony to the love and providence of God.  (A video and lyrics are below.)  I’m glad we also sang this song during the ordination.  What a powerful song for our commissioned members and ordinands.

My mom’s birthday is June 11th and the brain surgery (left frontal craniotomy) was on her birthday last year.  There’s a part of me that would love to forget that date and not have any mark or reminder of it.  There’s another part of me that knows that it was everyone’s prayers and the grace of God that brought me through and it should be celebrated.  Don’t know which one is winning yet.  The jury is still out.  I get teary just typing about it.  Does that mean I haven’t fully dealt with it yet?  Could be.  Too soon?  Maybe, but not entirely.  Does that mean that was a mucho grande big deal and it’s still crazy to me that all of that happened a year ago and wasn’t just a bad dream?  Yes.  It’s hard to believe that that was me and if I didn’t have my lovely scar that I worry about getting sunburned, I might forget.

It’s hard to process things.  There’s a certain grief and emotion that swells up when you least expect it sometimes.  And it happens to all of us.  I was sitting in the Memorial Service for ministers that have gone to be with God over the past year on Mom’s birthday on the anniversary of my brain surgery and I just couldn’t do it.  I got through the sermon but the slide show of the pictures just did me in.  It’s always been a powerful service to me since in my mind the South Carolina Annual Conference is my home/my church and I know that one day there will be a service for each of us.  And there goes a Sandi Patti song and slides of the pastor that helped during my Gandaddy’s funeral and I have to head on out.  Even in the midst of the thanksgiving for life, even in the midst of the joy of the swelling of the Spirit, even in the midst of realizing that nothing can pluck any of us from God’s hand – there’s still both the realization that something really scary and really serious happened and a something that’s even beyond the word thanksgiving that describes that depth of feeling behind all that could have been and is now.

As I think about those that have faced such devastation in the storms and floods this year, those that have lost loved ones, those that are facing moves and transitions, those that are searching for hope and a rock to lean on when it feels like the walls are closing in around you – I know that the great Comforter is at work in our world and is blowing, inspiring and surrounding us every step of the way.  I am grateful that it is in Christ alone our hope is found and that we will never be turned away from it.  It’s available to each of us.

What are you grieving today?  What are your struggles?  When’s the last time you felt that ground swell of emotion?  How do we see the Spirit at work in our world?  What are the fears and frustrations that we’ve held on to and not given over to God?  What are those buttons of grief that can be turned in to sources of joy in our lives?

We are given songs or videos or movies or sermons or scriptures or friends or emails or a beautiful tree or the melody of the ocean or the stillness and quiet to claim as our promise from God.  It’s there waiting for us.  May we open ourselves to the Word God would speak to us this day.  May we claim it and know it and feel it to the depths of our souls.  May we know and trust.

In Christ alone my hope is found
He is my light, my strength, my song
This Cornerstone, this solid ground
Firm through the fiercest drought and storm

What heights of love, what depths of peace
When fears are stilled, when strivings cease
My Comforter, my All in All
Here in the love of Christ I stand

In Christ alone, who took on flesh
Fullness of God in helpless Babe
This gift of love and righteousness
Scorned by the ones He came to save

Til on that cross as Jesus died
The wrath of God was satisfied
For every sin on Him was laid
Here in the death of Christ I live, I live

There in the ground His body lay
Light of the world by darkness slain
Then bursting forth in glorious Day
Up from the grave He rose again

And as He stands in victory
Sin?s curse has lost its grip on me
For I am His and He is mine
Bought with the precious blood of Christ

No guilt in life, no fear in death
This is the power of Christ in me
From a life’s first cry to final breath
Jesus commands my destiny

No power of hell, no scheme of man
Could ever pluck me from His hand
Til He returns or calls me home
Here in the power of Christ I stand

I will stand, I will stand
All other ground is sinking sand
All other ground, all other ground
Is sinking sand, is sinking sand
So I stand

Posted in Death, Faith, Health, Tumor

Would life change for you?

Posted on by narciejeter

I know I haven’t posted much about the tumor lately and to be honest I haven’t wanted to.  This is not because I haven’t been thinking about it but the opposite.  I think this summer when everything happened, I didn’t really process or take the time to think about everything because it was so fast and then it was the school year and semester and you know how crazy that is.  With a little bit of a break over the past couple of weeks, it’s been tough.  I have a friend who says she only blogs on the bad days, but for some reason, I don’t.  I’m not saying that I haven’t had challenging days and hard days and have not blogged, but when I’m really wrestling with something, I just don’t always want to articulate or “sermonize” it.

After Christmas I did my latest MRI and the next day went and saw the neurosurgeon.  He said there was no change, so the little line of tumor on the motor cortex hasn’t grown and for that I’m thankful.  He didn’t really say anything new, but for some reason I took it more to heart.  I asked him whether I should get off of the seizure medicine or not and he said that was up to the neurologist but he also warned that it is more likely that I will have another symptom whether seizure or otherwise before an MRI would actually pick up a change.  Then he said that it’s not a question of if the tumor will come back, but when.

Now, I know that he’s said this before and I know that this type usually recurs but for some reason it hit me worse this time.  I think it’s because there’s a huge part of me and a sense from a lot of the people around me that everything’s fine now and back to normal and that I have to lead my life as I’ve always lived it.  And I do really want to do that.  It’s hard to tell if I should just go about business as usual or if my life really has changed completely.

I am a huge fan of wikipedia.  That may be completely against my English teacher self and I know it’s not always right or accurate but if you want something quick and consise – especially when I’m trying to figure out history during the Tudors or looking up actors or actresses – it’s a great site.  Did you know that I didn’t even look up “oligodendrogioma” which is the tumor that I had/still have a piece of?  Didn’t even think about it in the rush of the summer and semester.  The diagnosis and the treatment and much of the article follows exactly what we’ve been doing and I didn’t even think to look there.

Now part of me is glad that I didn’t.  I didn’t know that the median survival times for a grade 2 is 11.7 years or for a grade 3 is 3.5 years.  That’s a median I know and as the doctor said I could still live to be 80.  But how does knowing that information affect my life?

Not that we ever know specifics or a particular time table but if you knew you had say 5, 10, 15, 20, 30 years to live, how would that affect how you live your life?  Would it?  Would you change what you eat or how much you exercise or if you take your vitamins?  Would you spend more time with friends and family and try to make more meaningful relationships?  Would you change careers or look at fulfilling your hearts desire in a different vocation?  Would you live your life differently?

I’m not talking about Tim McGraw’s, “Live Like You Were Dying” song and sky diving and rocky mountain climbing – love the song but that’s too cheesy of segue for even me to post.  I’m asking a real question.  How would you live your life differently?  Or would you?  Maybe it’s better just to keep on keeping on and keep fighting and do the best you can and not change anything.  Or maybe we should be living our abundant lives to the fullest every day regardless of any prognosis, time table, or outcome?

I don’t know.  I don’t quite know how I feel about this yet or if this changes anything.  I know that I believe that prayer is powerful.  I know that when I read that article or I read other materials about this tumor that it is miraculous that I have come away from this with very little deficits – not being able to remember names and numbness and tingling every now and then is significantly different than what could have happened.  I thank each of you and my community folks for this.  I know that God walks with those on the 3.7 year side as well as those that live to be 80 and that God’s mercy, love and grace is shown to each.  I know that we all have “stuff” to deal with and for each of us it can be a long and winding road.

When I think about New Year’s resolutions or I think about the future, I think very much of how we live our life.  How do we let our lives speak?  Would you live your life differently knowing…?”

Here are some quotes from the beloved Parker Palmer:

“Verbalizing is not the only way our lives speak, of course. They speak through

our actions and reactions, our intuitions and instincts, our feelings and bodily

states of being, perhaps more profoundly than through our words.”

“Our deepest calling is to grow into our own authentic self-hood, whether or not it conforms to some image of who we ought to be. As we do so, we will not only find the joy that every human being seeks–we will also find our path of authentic service in the world.”

“We need a coat with two pockets. In one pocket there is dust, and in the other pocket there is gold. We need a coat with two pockets to remind us who we are.”

“Humility is the only lens though which great things can be seen–and once we have seen them, humility is the only posture possible.”

“As a young man, I yearned for the day when, rooted in the experience that comes only with age, I could do my work fearlessly. But today, in my mid-sixties, I realize that I will feel fear from time to time for the rest of my life. I may never get rid of my fear. But . . . I can learn to walk into it and through it whenever it rises up . . . naming the inner force that triggers . . . fear . . . Naming our fears aloud . . . is the first step toward transcending them.”

Posted in Health, Tumor

No Negative is Positive

Posted on by narciejeter

So that’s what the doctor said today.  No negative change is positive news.  Mike and I went to see Dr. Smith today and he showed us the scans.  I like to have visuals so I’m glad he showed them to us.  There’s still a bright part that could be scar tissue, swelling or still some of the tumor – but as Mike said – there’s no new players in the band.  Ie. there are no new negative things.  So that is good!

Mike started asking a lot of questions in typical deep voice, serious form and Dr. Smith responded, “Right…you’re the questions guy.”  That was funny.  He asked why the image still looked like that with like a hole there and he said that I would never have another normal looking brain MRI again.  The brain doesn’t grow back and the tumor was in part of the brain matter so therefore some of it is gone.  Very little though.  Ridiculously I was taking it very personally that Mike was talking about my brain and part of it not being there even though I know I’m still me and I’m okay.  Anyway, the funniest thing of the afternoon – Mike says well we only use a small percentage of our brains anyway, and Dr. Smith says something along the lines of well she didn’t really need that part anyway.  Yay!

Mike is excited by all of this news!  No negative change is a positive report.  We’ll keep doing MRI’s every 3 months for awhile and we’ll see what happens.  Dad on the phone earlier asked what could have made the news perfect?  Well that my brain is normal of course.  That it’s not always going to look like that on an MRI.  That there’s no bright smudgy line that’s still there.

But hey – I’ll take “No negative is positive” any day of the week.  This paired with some folks dropping off some paper towels as donations to Wesley – have made the day sunny again – and even in my un-air conditioned building – that is good.

Posted in affliction, Campus Ministry, Faith, Health, Music, perseverance, Tumor, U2

So in reading about afflictions…

Posted on by narciejeter

Affliction is such a yuck word.  Don’t you think?  Affliction.  Doesn’t sound good at all?  I just googled it and did you know there’s an Affliction clothing line?  Why in the world would you want “Affliction” clothing?

The Upper Room this morning was on 2 Corinthians 1:3-7.  It begins with, “Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and the God of all consolation, who consoles us in all our affliction, so that we may be able to console those who are in any affliction with the consolation with which we ourselves are consoled by God.”

I wrote about the race earlier and about perseverance and some of our afflictions sure do take some perseverance.  This is the first week of school at Winthrop and could arguably be one of our busiest weeks of the year.  We’ve been doing our thing here at Wesley and things are going pretty well – it’s great meeting new people and love, love, love connecting and catching up with our returning Wesley folks!

But this is tiring….and draining….and so many more depleting adjectives.  It doesn’t seem like it’s just student life, but everywhere it seems that folks are tired right about now as we all get into the swing of a school year.

I admit that at times I am frustrated – I can’t remember things I used to.  I am really tired and the typical adrenaline boost is not kicking in.  I just can’t gear up for this right now – the energy reserves are not there.  I also finally got the letter scheduling the next MRI and surgeon’s appointment – September 14th MRI and September 15th the brain surgeon.

I’d like to think that I can do this normal welcome back wohoo wesley thing no problem and the same as always, but if I’m honest with myself – it’s not the same.  I can’t run around like a crazy person and not feel those affects.  Humbling.  Frustrating.  Frightening.  Freeing?

We get so caught up in a numbers game – so caught up in how much can we produce?  Who is coming to Wesley?  How many?  Who showed up for church on Sunday? How much money is our company making?  What did we do today?  There’s such a focus on numbers and what we do that we forget to just be and that we don’t have to do it all.  I write that, but do I mean that?  Josh and I were talking about numbers and church/Wesley/what is the crazy thing called ministry stuff this week and I know that when pastors say we shouldn’t focus on the numbers, that can sometimes mean they’re just using that as a justification for the size of the body of folks that they work with.  But sometimes I really do question numbers…is that all that there is to say that you’re doing something?  Do we get so caught up in proving that something is happening at our churches or in our classes or in our workplaces or in our lives that we miss the blessings and consolations that God gives us along the way?  Or do we miss being those blessings and consolations to others because we’re more concerned about the to-do lists and keeping up with “that” family or company or church or whatever?

I wonder what would happen if we didn’t just feel frustrated by some of these things that seem to limit us or tie us down but we could flip that and feel the freedom from the endless search for perfection and the chance to claim even our inabilities, sufferings, and crud for the grace and strength of God?  I can believe that at the beginning of the day reading the Upper Room.  It’s harder to believe at the end of a day wondering where it all went and how the list never gets shorter.

Maybe we just need to give ourselves a break…

U2’s “Walk On” is on my itunes dj right now.  Maybe that’s what we do from all the things that can weigh us down – we walk on.  Some of our afflictions may go with us, but we can trust that God is with us and we walk on.

“Leave it behind
You’ve got to leave it behind
All that you fashion
All that you make
All that you build
All that you break
All that you measure
All that you steal
All this you can leave behind
All that you reason
All that you sense
All that you speak
All you dress up
All that you scheme…”

Posted in change, Community, Grace, Health, Music, Tumor

Neurologist Update

Posted on by narciejeter

Hi y’all,

I realized earlier today I haven’t really updated folks on the latest health stuff.  It’s both easy and difficult to push that to the back of my mind – especially this time of the year as we prepare for the students return.

Mike and I went a couple weeks ago to the new neurologist and she’s great!  An Emory Med School grad and it was like night and day from before which was great.  Mike particularly liked her which is high praise.  We talked to her about the small things that have changed since the surgery and she did some tests that proved that we weren’t just imagining things.  I have found that I can’t always remember simple things or people’s names even I’ve known them forever.  She showed me some flash cards with simple objects on them and although I knew what each was and they were simple like an umbrella or something like that.  I couldn’t actually say all of their names for a little while.  It’s like I know it but there’s some sort of delay or block.  I knew that I had been feeling this way but when she did that test, I knew for sure, that everything wasn’t “back to normal.”  We then did a test where you’re supposed to walk in a straight line.  Yes, like the drunk test.  Welp, totally bombed that one too.  I haven’t noticed any difference in regular life with my motor skills so that was a little startling to know that even that’s a little off.  She said she would testify on behalf if I failed a DUI test – no worries there since I can’t drive but it was funny nonetheless.

 I know that this is normal after brain surgery and many people laugh and say this comes with age.  I get that.  I’m not expecting to do everything that I could do before or to be able to snap my fingers and that this all will disappear.  But it’s tough because like she said that day – I look perfectly normal.  The way my hair is cut and the way I part it now completely covers up my scar that stretches 22 sutures from the top of my head to my ear.  Now that is a great haircut!  When you look normal and you’re trying to go back to your life and all of the same challenges and demands, it’s easy to forget that things are different.

For someone that talks and remembers things as part of her job – her ministry – her vocation – her life – not being able to think clearly on your feet is hard.  There’s no way around that.  Am I worried about August quickly approaching and getting ready for the school year?  Heck yes.  Am I worried that my normal “meditations” with the students in worship will be that much more difficult trying to remember and bring things together?  Yep.  Am I learning that I need to depend on other people more and I need to rest in the grace of God more?  Oh yeah.  I feel like a middle schooler without her license as I ask people for rides all the time.  But then again, it’s good to let others help you sometimes.  If we really are community it’s a balance of each of us helping and taking turns and building up the body.

Anyway – long story short – the neurologist says I’ll be on the seizure meds for 2 years if nothing happens again.  One piece of good news that I liked since I’m a little afraid of the seizures – if I have a little seizure (not go unconscious) then that doesn’t start over my 6 months wait to drive.  Scary I know.  Only if I go unconscious does that restart so November 28th I am looking forward to you!  I’ll see the neurologist again in January so the only thing on the docket now is the MRI in September.

That and getting ready for the school year!  But hey that’s just the normal crazy campus minister to do list…

Mike has done a lot of songs by Michael Gungor in The Journey service and I really do like his music a lot.  We’ve been playing the Gungor album “Beautiful Things” in our car for a while.  Below is a song by their group called “Please Be My Strength.”  It’s melody and lyrics speak to me and I hope it will speak to some of you.

I’ve tried to stand my ground
I’ve tried to understand
but I can’t seem to find my way
 
like water on the sand
or grasping at the wind
I keep on falling short
 
please be my strength
please be my strenth
I don’t have anymore
I don’t have anymore
 
I’m looking for a place
that I can plant my faith
one thing I know for sure
 
I cannot create it
I cannot sustain it
It’s Your love that’s keeping (captured) me
 
Please be my strength…
 
at my final breath
I hope that I can say
I’ve fought the good fight of faith
 
I pray your glory shines
through this doubting heart of mine
so my world would know that You
 
You are my strength
You and You alone
You and You alone
Keep bringin me back home

Posted in Health, Tumor

Call from Doc

Posted on by narciejeter

Just to keep y’all updated on the medical part of this blog.  I talked with the doctor yesterday and he assured me that the Tumor Board agreed with his plan to wait this out for 3 months and then do an MRI to see how/if things grow/change.  Since they don’t know how long the tumor was there, they’re not sure how all of this will play out.  He did say that there’s no radiation needed right now so that’s good news.

I asked a lot of questions about it being a grade 2 tumor and what that meant.  I also really hedged on asking the question I really wanted to know specifically about this type of tumor but he was wise enough to know what I was asking.  He responded, “So you’re asking about life expectancy.” And I said yes.  And he said that there’s a wide range.  The tumor may come back in 2-3 years or 10 years or could be even longer.  A lot of it depends on how all of these MRI’s play out.  Bottom line – there’s no set answer for what this is going to look like in the long run.  But there’s no immediate threat.  This is not a grade 3 or 4 tumor.  And we are VERY thankful for that!

I know that your prayers had and will continue to have a great impact on these outcomes and I thank you for all of them.  I thank you for all of the cards and support and even pictures in the sand (loved that one!).  I thank you for walking with us and keeping us in your hearts.  Your support has been amazing and I seriously could never thank you enough.  We don’t know what the future holds.  No clue.  But we know who walks with us each step of the way.

I’ll meet with the neurologist next week and we’ll go from there on that end.  And other than that – it’s time to keep rockin and rollin with life.  Thank y’all, thank y’all, thank y’all!  Can’t say it enough!

Posted in Faith, Family, Health, Methodism, Tumor

Figured it out.

Posted on by narciejeter

Fear is a powerful thing.  My greatest fear growing up was that something would happen to my family and that I would be all alone.  I still have that fear now.  If someone is not in the right place at the right time, it’s in the back of my head.  Maybe that makes me crazy or hypervigilant or just weird.  A very definite possiblity.

When I was doing CPE (Clinical Pastoral Education) at Scottish Rite Children’s Hospital in Atlanta I learned a great deal about loss and death and everything in between.  People always want some sort of reason…some sort of answer…something they can cling to and trust and know.  In the 17 on call nights that we had, there was only 1 that I didn’t have sort of call and this happened to be the Friday night that I was frantically working on my probationary member Board of Ordained ministry papers finishing up at the last second as normal in my world of procrastination.  I think everyone was praying for no calls that night and I was able to email the papers to Mike, he printed them out back at our home in Decatur and then mailed them in fed ex right before midnight.  Craziness.

Anyway, to say the least, CPE was a life-changing experience for me.  I maybe crazily got a lot out of it and learned a ton about myself.  Dealing with tragedy in the lives of children was tough as heck and has made me a somewhat paranoid parent in being overly cautious with hotdogs, the pool, second story windows, monkey bars and all sorts of random things.  On my second to last on call I performed my first baptism on a few weeks old dying baby.  I had never done a baptism before and didn’t even really know what to do, but it ended up being one of the most special experiences I have shared with anyone as this life returned back to God.  In the midst of this I got word that a 6 month old was in the ER from a car accident downstairs.  I stopped in on my way out and checked on the child who they said had substantial brain injuries.  There wasn’t any family there and so I eventually left to then be called back late that evening.

I found out on the way that the police had just located the child’s mother who had been working at Ryan’s making some extra money for Christmas.  The child had been with her 3 year old brother and husband who both had died at the scene of the accident.  I was waiting at the hospital when the family – mother, grandmother, grandfather, uncle arrived.  I’ll never forget that night.  Their child had been moved to the PICU and the doctors were pretty sure she was brain dead.

I don’t even have words to describe that night.  I do remember us going to the chapel of the hospital right before the final evaluation at 7 am the next morning and I remember that mother screaming at God in that chapel.  With all of the anger and grief and sheer despair that all of us felt and much, much more.  I had at that point seen a lot of children be declared braid dead and I had accepted it and grieved with the family and been whatever support I could be, but not until that day did I scream at God too.  As the mother of this child said “Come on, you’re God.  You can do anything.  I don’t care what they say.  You can work miracles.  You can make this happen.”  I felt myself thinking the same things right along with her.  You are the Great God of the Universe – You can make this happen.  You can do this.

There are so many stories that run through my mind of miraculous and amazing things that have happened that we rejoice and are unfathomably thankful for, but then there are also many where we feel sucker punched and reeling.  I know that life is supposed to be more normal now.  The tumor board recommended the same wait and see and we’ll check back in 3 months with the MRI and see how much what’s left has grown, etc.  I am super thankful that this is not worse.  Really.  But it took until today for me to figure out why I haven’t been able to totally bounce back.  Oh I’m bouncing.  Thanks to y’all’s prayers.  But there are times when I’m tired and sad and it’s hard to keep bouncing.  I figured it out today.  It’s that fear thing again.  But for me it’s the reverse.  When I witnessed that family’s heartbreak, I saw one of my fears realized (boy was that fodder for CPE discussions).  I hadn’t been able to entirely put my finger on what was getting to me until today.  Not that this wouldn’t happen without a total fight and all the strength and grit that I have, but it is terrifying to think of ever leaving Mike and my kids.  For my kids not to know who I am or how I love them.  For them not to feel that to the essence of their bones.

I know this is not a feel good blog post.  I haven’t posted in a lot of days and it’s not because they’ve been bad days, they’ve been good.  But part of the reason that I’m writing these – actually one of the main reasons – is to process this for me.  Read it, don’t read it – it’s not hurting my feelings.  For me I think naming my fear, naming the imaginable loss I would feel leaving Mike and my kids, even if there’s no way in the world that would happen and the prognosis is great and I should be happy – just naming it makes a difference to me.  Saying the words outloud and acknowledging the big and small shifts that this has made in my life is important in moving forward.  Gosh, it sometimes sucks to practice what you preach.

What clicked today is that even in the most dreadful things, I know that God is still present.  God is still with us.  God is still cradling us.  Whether this is in the crazy topsy turvy days or the floating in between times.  I’m not going to let fear rule my life.  And I certainly don’t want it to rule the next 3 months.  It’s hard to live that abundant life Jesus talks about when fear takes root in your heart.  So my hope is that we get them out there.  That we say them outloud.  That we can let not just the nice happy parts of our souls shine through but that we can be honest in our questions our concerns our frustrations.  I keep thinking of Star Wars and Twilight references here, but I’m going to abstain from my typical music/movie references even though I love them.  It’s amazing how acknowledging our fears and letting the light shine on them can change our perspective and help keep us moving forward.  Hope y’all didn’t mind me acknowledging mine.

Posted in Faith, Family, Health, Hope, Tumor

So it hit me…

Posted on by narciejeter

I don’t really know how to begin this blog.  It’s been a long weekend.  While I was at the doctor on Wednesday we realized I have a sinus infection and Mike and I have been battling those all weekend so I know that has something to do with it.  It’s been exhausting and for some reason on Friday everything just kind of hit me, that 4 weeks from that day I randomly had a seizure and they then the next morning found this brain tumor and two weeks from that day I had that brain tumor mostly removed and on Wednesday I found out it was a type 2, not a type 1 or a 3 or 4 and I will wait for 3 months and will get another MRI and will get to wait I’m sure several days after that to see what the deal is.

I’ve been asked about getting second opinions and so many of my much beloved Emory people have offered medical expertise and I am full of gratitude for that.  I think it was Friday though when it hit me that all this really has happened and this is not a bad dream and this is my new reality.  I kind of hate the phrase at this point “new normal.”  A large part of me wants to scream the heck with the “new normal.”  I don’t want to find it.  I don’t want to have to find it.  I don’t want any of this happening period.

I know that there are very many people that have this worse off than I do.  It could have been a type 3 or 4 malignant.  I’m not even going to name all of the worse things that could be happening right now, and I know that and feel the pain of that.  But I also have to acknowledge that for me this sucks.  For a known and self-identified control freak, not being able to drive anywhere when I get carsick all the time, not having any control over this line of tumor still in my brain, not being able to do anything about it (yes I know I can get a second opinion and I can choose my attitude and I can be thankful, but that’s not how I always feel), not having the energy to clean up the house much less care that it’s a mess….it really just stinks.

So I battled this funk all weekend.  I read three books over the weekend – two ended sadly and praise God the one I read yesterday ended well.  We watched Carolina make it into the College World Series which is tremendous.  I spent the weekend playing with the kids and we ate good food, relaxed and I’m as always thankful for the help of my mom and Mike in keeping things together right now.  On Sunday morning I had absolutely no desire to go to church.  No I didn’t pull the I’m going to go to Bedside UMC this morning or Boxsprings Baptist, but I didn’t really want to go.  But you know that’s what happens on Sundays…Mike goes to church and on the rare chance that I’m not preaching I get to listen to someone bring the Word.  So Mom and I got the kiddos dressed and ready for church and off we went.

All morning I had been on the verge of tears and when we went into Bethel the first hymn was “O How He Loves You and Me” from the Faith We Sing 2108.  That was it.  I ended up having to go downstairs because I was pretty much hyperventilating crying.  It’s a simple song…”O how he loves you and me!  O how he loves you and me!  He gave his life.  What more could he give?  O how he loves you; O how he loves me; O how he loves you and me.”  I wasn’t upset because I didn’t believe the words.  I was upset because I do believe the words.  I know God loves me but that doesn’t completely change how devastating some of this is.  We can feel and know God’s love and there is hope there, but sometimes all we feel is despair at all of the what if’s and could have been’s and it isn’t easy to keep on singing and praising when you’re just not there.

By the time I got it together Josh was on to the children’s sermon and then the choir played a song that Patti had learned at a UMW retreat.  It’s also out of the Faith We Sing 2218 called “You are Mine.”  Here are the words:

I will come to you in slence, I will lift you from all your fear.  You will hear my voice, I claim you as my choice, be still and know that I am here.

I am hope for all who are hopeless, I am eyes for all who long to see.  In the shadows of the night, I will be your light, come and rest in me.

Do not be afraid, I am with you.  I have called you each by name.  Come and follow me, I will bring you home; I love you and you are mine.

I am strength for all the despairing, healing for the ones who dwell in shame.  All the blind will see, the lame will all run free, and all will know my name.

I am the Word that leads all to freedom, I am the peace the world cannt give.  I will call your name, embracing all your pain, stand up, now walk, and live!

Do not be afraid, I am with you.  I have called you each by name.  Come and follow me, I will bring you home; I love you and you are mine.

I kept crying but that at least got me to the sermon which was great and much needed as well.  All day I just kept struggling with this.  And I finally just let it out during Phineas and Ferb and told Mom and Mike the things that I’m frustrated with and afraid of and just sick of.  I don’t want to bottle this up and it keep giving me nightmares and I don’t want to take it out on my children or family, but it’s all so much sometimes that everything spills over.

Somehow though after saying it out loud to them and after eating some Fruitloops and watching the daytime Emmy’s I felt better.  Last night was one of the first nights I didn’t have a nightmare and for that I am thankful.  Is every day going to be easy?  No.  Does life sometimes really completely stink?  Yes.  Are there sometimes in our lives when tears of desperation are all that we can muster? Sure.  Is there One who still loves us and holds us and wants the best for us even in the midst?  Heck Yeah.  Is that hard to handle sometimes?  I think so.

I can’t help hearing that refrain from the hymn – “Do not be afraid, I am with you.  I have called you each by name.  Come and follow me, I will bring you home; I love you and you are mine.”  I guess sometimes there are things that we just have to cling to in the midst.

The kids were watching an Anne of Green Gables cartoon on PBS yesterday and I LOVE Anne of Green Gables.  It was a lot of fun watching it with them and I love that Kevin Sullivan produced both the Anne that I grew up with and this new animated series.  She always had a way with words saying things like not just feeling sad but being in the “depths of despair.”  Funny girl.  Maybe sometimes we are in the depths of despair.  And that’s real.  It’s not always faith, praise, and strength.  Who in the heck is like that all the time?  We are real people with real crud that happens and sometimes that’s not beautiful or picture perfect.  There are questions.  There are fears.  There is struggle.  I’m glad we don’t have to always have the answers and I’m glad that we don’t have to stay in the depths.  May God give each of us the strength and the tenacity and the courage and the hope to keep keeping on but may we also be thankful that we can come battered and bruised and confused and despondent and that’s okay too.

There’s a song I listened to a lot as a gangly too tall teenager facing typical mean girl stuff – nothing out of the ordinary, but you know how it goes.  The song is by Twila Paris and it’s called “The Warrior is a Child.”  May we each know that there’s a home to run to and that it’s okay to struggle with picking up the pieces.

Posted in Health, Music, Tumor

Quick Report

Posted on by narciejeter

Not going to spend too much time reporting on this and will debrief and reflect more later but we went to the neurosurgeon’s and the nurse took out the stitches – hallelujah!  My head is my head again so that’s good.  The pathology report says that this is a “low grade oligodendroglioma grade 2.”  Right now we just hang out and I get a MRI in three months and see if it grows or not.  Because they can’t determine how long it’s been there so how fast it grew the first time, they don’t really know how fast or if it will grow this time.

There are four grades – 1, 2, 3, and 4.  There are a ton of websites but one that helped me was http://www.irsa.org/astrocytoma.html.   So it’s not a grade 1 which is the better of the four.  But it’s also not a grade 3 or 4 which are malignant.  So it’s pretty awesome that it’s not malignant!  I would prefer a grade 1 but hey – I’ll take a 2 over a 3 or 4 any day of the week.  The group will present my tumor (those are two words you’d really not prefer to put together) next Wednesday to the tumor board and we’re supposed to call on Friday to see if there’s any change in what we’re going to do.  We’re still scheduled to meet with the new neurologist in a couple weeks and get those things going but as of now unless there are changes in my symptoms like more seizures, etc. than we’re to go about life as usual.  Sadly, Nicaragua is still a no go and they don’t want me to get overly exhausted, but other than that – life is good and beautiful and wonderful.

Thank you so very much for the prayers!  Both nurses were shocked that I felt so good after having surgery.  They couldn’t believe that I didn’t have any tingling or loss of feeling or anything besides some headaches.  I know that’s y’all’s prayers at work.  I know that the rapidness of my recovery and feeling as good as I do now is because of the power of those prayers and I appreciate every one of them.  I’m not going to go too much farther in that because I don’t want to start crying here at the computer, but THANK YOU!!!!!!!  This is good news.  We’re going to claim that and believe that.  And even better – life can go on as usual at least for three months so that means having fun with Mike and the kids, family and friends, getting ready for a new year at Wesley, preaching on Sundays and loving life!  Hallelujah!!!!!!!!!  God is good!

I’m going to close you out this afternoon with a song that I love by the group New World Son called “There is a Way.”  Love it! http://www.youtube.com/watch?v=17eWXuUTq5s

Love, love, love to each of you!  Thanks for the prayers.  Loving the light breaking through each day!