I’ve not used this as a blog much anymore since the second surgery and I say I will start using it again, but it doesn’t ever happen. But that stops tonight. Because this is the place that I process. This is the place where I don’t read anything back over. Unedited. Semi-uncensored. Real. Raw. I started this blog before my first brain surgery. I would read back over my post, but that would break my cardinal rule! =0)
I didn’t understand at the time the ramifications “brain tumor” would have on my life. Some would say I was in denial. But I’ve processed things at my own pace, along and along. I didn’t look up what type of tumor I had until the December after I had the first surgery in June. When the tumor increased in grade, I didn’t process it (what with the radiation, chemo, speech, occupational, and physical therapy) until a transatlantic flight to the Ukraine. Still then, I didn’t share it with anyone until March. That the movie “Stuck in Love” let me know I want to see Enoch and Evy go to college. That’s the age group I spend my life working with so I will hope beyond hope that I get to see it happen.
Evy asked me on Tuesday if I would be around when she is a grown up and I said honestly, “I hope so.”
I’ve been hesitant to share openly, honestly and vulnerably on here because this is a public forum whether I post these blogs on facebook or twitter or not. I began working a new job two years ago and I didn’t want them to judge me as weak, broken, or not enough, especially after the second surgery at the end of the first year I was here. I KNOW that’s not what most people thought, but that’s how I felt. I tell my students all the time don’t wear masks, don’t hide who you are, and I feel like I’ve had a mask on here. I don’t mind posting sermons or speaking gigs, but I’m hesitant to share the day to day because it’s filled with all of the challenges and I feel like if I don’t write them down and just shake them off or zip past them than I’m not dwelling on them, but as my mom reminded me this past week, what a wonderful testimony of what God can do. I’ve received my share of challenges, but God’s grace and love and peace and strength is ever sufficient for all my needs. Mom often hears the Mother Teresa quote, “I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.” I do not even begin to think of myself as Mother Teresa, I’m not that saintly and I like tv shows too much, but I can do the best I can to be as authentic as I can be. Sharing the good times and the bad, the mountain tops and the valleys.
PS – I did the title based off an old Silers Bald song.
I’ve been preaching for four Sundays now. Reading from a manuscript. Sunday was the first Sunday I had the nerve to do the communion liturgy and benediction extemporaneously. I bet it was the shortest communion extrapolation ever! I’ve been frustrated with how slow a process it is. I came home late in the afternoon after having lunch with the students and something prompted me to reach for The Legend of Bagger Vance among the collection of our DVD’s. It was a God thing. I needed it. And God knew it.
“Inside each and every one of us is one true authentic swing. Something that we were born with. Something that’s ours and ours alone. Something that can’t be taught to you or learned. Something that got to be remembered. Over time the world can rob us of that swing. It can be buried inside us in the woulda, coulda, shoulda’s. Some people forget what their swing was like.”
“You know I can’t quit.”
” I know. Just making sure you know it too.”
“Look at his practice swing. Almost as if he’s searching for something. And then he finds it. He settles himself right in the middle of it. Feel that focus. He’s got a lot of shots he can choose from….But there’s only one shot that’s his. Authentic shot. And that shot is going to choose him. There’s a perfect shot out there trying to find each and every one of us. What we got to do is get ourselves out of it’s way and let it choose us.”
“I can’t.”
“Yes, you can. But you ain’t alone. I’m right here with you. I’ve been here all along. Now play the game. Your game. The one that only you was meant to play. The one that was given to you when you come into this world. You ready? Take your stance. Strike that ball. Don’t hold nothing back. Give it everything. Now’s the time. Let yourself remember. Remember your swing.”
It was like my own personal pep talk. I need to be me. I need to trust my own voice. I need to be centered on God and all that comes with it. It reminds me of the old Siler’s Bald song Getting Back. With the lines like, “I crawl, I run, as you wait for me//With open arms, there you stand//take my heart in your hands//I’m going to keep my eyes on you//I pray this life you’ll see me through.”
So there’s progress. I was able to do the chinese balls with my right hand. I wasn’t able to do that a month ago, so I dreaded it when my occupational therapist placed them before me. But I was pleasantly surprised that I could do it!
It still terrifies me to stand in the pulpit. But I know I’m not alone. May my nervousness draw me closer to God. This is my prayer.
Thanks for all of yours! I walk this journey with all of you by my side and a great cloud of witnesses looking on.
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…”
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.”
The surgery was successful. The doctor said he got it all. The speech is improving and the hand is almost back to normal. Answered prayers!
Mike got a call from the radiologist on Monday to say that it upgraded to a malignant tumor. Grade III. Continued prayers!
We met with the radiation oncologist today. The oncologist explained that the surgery was successful, but the likelihood of recurrence is pretty good. I will start radiation and chemo on Thursday, 5 days a week for 6 weeks. It will be 20-30 minutes a day. This will be preventative with minimal side effects, the worst of which is described as fatigue. They said I would have temporary hair loss randomly and permanent hair loss at the site of the tumor. But during treatment I will still be in the office, and rocking my speech and occupational therapy.
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.
So it’s there. A little bit after the parental units, but nonetheless, the anger stage is in the house. I, like most of you, know about the stages of grief and it’s almost worse that I know this and realize this and can clinically say, why of course, Narcie Jeter, what you are experiencing is a quite substantial dose of the anger and sadness stages of grief.
Lord knows why it took me so long and why I went into survival, defuse the situation, and keep bouncing along mode except for the fact that I just really don’t want to deal with this. I really don’t want to think about surgery again. I really don’t want to show the kids the scar from the last time and let them know this is all going to be okay. I really don’t want to feel so freaking ticked off and frustrated and distracted and weepy. Weepy. And not in a nice, cute crying way, but watching old episodes of Dawson’s Creek and crying like a nutcase.
I don’t really know how to make this feeling go away so besides the Dawson’s Creek marathon which is strangely always comforting (nutcase, I told you), I’m trying to blog it out. Maybe if I articulate whatever this is…since I don’t really have a punching bag and I probably shouldn’t throw things against the wall so late at night.
I don’t actually know what I want.
I don’t know if there’s an answer.
I don’t even know if there’s a question.
Things I know: I love my family. I trust God. I know there are many, many people praying. I appreciate that greatly. I love what I do – all of it – silly, serious, and in between. I am tired. I am worried. I am scared. I am loved and cherished by an amazing man who is more than I ever deserve or imagined. I have done this before and I know all will be fine and it’s a great doctor and facility. I can’t decide if this is a big deal or not a big deal or if it’s just normal, which is weird and not quite right. I’m already wondering about the next surgery or what will happen… I have the two silliest, sweetest, most unique and precious and precocious children imaginable and I swing between the hope that they may never know anything about this because I wish I could control things and realizing that this isn’t just my story but our story. I realize that there are a heck of a lot of people dealing with things more awful and challenging and I sometimes feel whiny and weak for even articulating this.
And yet. When I start typing and I stop feeling the waves of anger for a bit and I stop crying along to “I Don’t Wanna Wait” like a sad sack, I know that God is carrying me and holding me each step of the way, which ironically in some ways makes me cry more. And for the record, I’m not writing that as a pastor and I don’t care a hill of beans if anyone reads this, but it’s just good to feel and know that. Even as silly as that may seem to some.
Thanks for being on this journey. Thanks for praying. Even if I don’t always answer the emails, comments, facebooks, fast enough or at all, know that I appreciate them and I read them. They help that “held” feeling when it’s denial, anger, sadness, and yuck city. Love you all. Especially my crazy WNWers that would let me share my Dawson’s obsession. And if any of you reading this make fun of me for my silly, trashy, and immature tv watching….you’re going to get it. (I kid. Mostly.)
***I also realize that I write plenty of run-on, stream of consciousness sentences, and I, nor the English major inside of me, actually cares. So ha!
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.”
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.
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
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.”
Blessings on the Journey 