What thirty-nine looks like...

Oh thirty-nine.  You are so fine.  

The more birthdays I have, the more I love them.  I think people have caught on to that because the fanfare seems to grow annually.  It’s a great time for reflection, a great time for a self-check as to who and where you are, and more importantly who you want to be.  I think back to 29, and the tiny house with the one-year old who we were trying desperately to get to sleep at night.  I lived in 1100 square feet of sippy cups and Elmo, oblivious to real problems. And then, a few days after my 29th birthday my mom was diagnosed with cancer.  The jarring and jolting reality would begin a decade of my life that in some ways would become terribly worse before it got much better, and better would sometimes only mean different.  I would question God, be angry at God, try to make deals with Him, and then eventually learn to trust Him in all circumstances, well most, because I’m human.  And He made me anyway so he already knew that part.  

Thirty-nine is certainly not old.  I’m surrounded by those who are both older and younger and in reality I think I’m the same age until they tell me how old they are and I realize that was so 15 years ago.  And when I take a closer look, they had time and cared enough to curl their hair and the wrinkles around my eyes from years of laughter aren’t really there on them.  But, I’m good, because I’ve laughed more.  And, they are sending me pictures of their sonograms and videos of their babies crawling so that’s a bonus.  We are all the same.  We all have struggles and some of those 26 and 29 year olds have it much more together than I do.  And they struggle more than I do, or at least differently.  

Somewhere along this last decade, the little boy that watched Elmo and wouldn’t go to bed is now in middle school.  I’m praying that he walks out everyday and is respectful, loves others, and loves God.  I’m praying that he has good friends and that he makes good choices.  Sometimes I’m praying that God will hold back my hand from his smart mouth or that God will grant me the patience to show him how to “find x” for the tenth time.  This was my exact prayer at about 10 pm on my birthday.  I am so fully invested in his future that I have spent the last decade pushing and encouraging and shoving his introverted little self into the uncomfortable when I just wanted to scoop him up and go home.  But, I know that one day he will find his voice and people will know how funny he is and appreciate how deeply he thinks and how fully he loves.  I know this because I used to be him.  And I do this because in another decade he will be twenty-one and the world will have him.  But, for now, if I need to reassure him at the start line before high-tailing it to the bottom of the hill to see him run, I’ll do it, because he asked me to.  And I can.   

Somewhere else along this decade, I gave birth to what I could best compare to Olaf, the happy snowman from the Frozen movie.  I named her Martha after the other most doggedly determined person I know besides myself and there is no doubt it was perfect.  God’s timing was also perfect as she had no idea how her joy helped to overshadow sorrow as I rocked her to sleep when she was a baby.  She has no idea how her busy little toddler body that would not allow me to stop gave me no choice but to put aside my problems and keep going.  She shares my love for pronto pups, jewelry, magazines, and shoes, but also for people.  She sees only the good and gives her all, but can size up reality faster than you can blink.  For my birthday she wrapped up a bracelet that she had bought with her own money, one that she insisted was for her when we were shopping one day.  She was so proud of herself and I am even more proud of that sparkly little bracelet.  Now, I didn’t make her heart that big, God did, but she teaches me to open mine up just a little more.    

At thirty-nine, what I really am is okay.  Not the kind of complacent okay because you can always improve, but the kind of comfortable-in-my-skin okay.   I am okay with the fact that it’s really hard to change my mind once it’s made up or hurry me up if I’m not ready, the brutal honesty that flies out of my mouth, and the wrinkly skin on the top of my hands that I noticed now puddles like play doh under one of those public restroom hand dryers.  The only thing that really matters is that these hands can hold a little hand when it reaches out and untie a knot it a yo-yo string at a moment’s notice.  I am okay that sometimes I can’t “people” anymore and retreat to Friday nights at home with cheap pizza.  I’m okay that I can’t pretend to like things that I don’t, like camping and Brussels sprouts, unsolicited advice, Metallica, and being cold.  And, I’m totally okay with my decision to abort dorm accommodations for the Hilton if the opportunity should arise.  

I’m okay with getting older because older means living.  Age is just a number but when you work hard for those numbers they mean a lot more.  I looked down once at a stack of medical papers with my name, birthdate, and age printed on them at thirty-three and I was told that was all I would get.  Last week, I ran a race and when I looked up my time, reality hit as I saw a “39” beside my name.  There’s just something about seeing it in print.  When I saw that the other two people that beat me were thirty, I wanted to complain about the 9-year age bracket but I bet their next decade will look nothing like mine.  Let them have that one.  

At thirty-nine, I sure don’t have it all figured out.  In fact, many times my every day life looks a lot like a reality TV show.  But, I’ve learned to hold on to what’s important.  I’ve learned that if something keeps you up at night, then it’s a good idea to do something about it because it very well might be the Holy Spirit.  I’ve learned the true meanings of hope and love and I have very tangible examples of them.  And when the conversation turns to grace, I can usually one-up that too.  I’ve learned to persevere and I see glimpses that my children are learning this too - when your shoe falls off in a race, you keep running; when third grade is hard, you press on.  I’ve learned to look at the perspective of others before I make judgements because most of the time the intent is good, it’s the execution that is poor.  I’ve learned that my kitchen table is the safest ground for discussion, laughs, and solving the world’s problems because the end result is always to turn the lights off and go to bed.  I’ve also learned that a cup of coffee and a decorating magazine can be equal to an attitude adjustment, especially if enjoyed on a patio.  

At thirty-nine I do hard things.  I still don’t want to, but I do them.  I do them and move on to the next thing, sometimes learning from it and sometimes just checking it off the list.  And sometimes buying myself some earrings because hard things deserve earrings.  

Every month, my good friends at CVS send me a little card with my chemo drugs that has funny little sayings like, “may you be happier than a bird with a french fry.”  Maybe they knew it was my birthday, because this month’s quote was from the great Mark Twain and very fittingly said, “Wrinkles merely indicate where smiles have been.”  Bring on the wrinkles.  Bring on the smiles.  Where most people are looking at forty with a side eye, I’m headed for it with a wide-eyed grin. 

One thing’s for sure, I’m going to be one heck of an old lady.  

Thirty-nine and counting....

KJ

that time I was a number...

A few months back, I got a phone call, an email, and a Facebook message all at the same time from somebody at Vanderbilt.  The sight of a 615 number on my phone can send me into a hyper-alert state, so I usually just let them leave a message.  I’m not a quick processor and even though it’s highly doubtful that they are digging through my DNA or have the capability of seeing some new tumor from 200 miles away, somehow my brain thinks that.  Turns out they just wanted my story.  Better yet, they wanted me to write it.  

My story.  

I have a story.  

January 2011, was the first time I wrote something in black and white letters for the world to see.  It was more out of necessity than anything else.  The phone calls and messages got to be too much and my introversion could not take the face to face explanation anymore so I started documenting in the sick people’s digest called Caring Bridge.  I only wrote what I was okay with my children reading one day - they needed to know that I tried.  Most of the time it was a chore for me to put some sort of positive spin on difficulty and defeat.  People read it.  They shared it and then they prayed and they encouraged.  And, I went on about my business and let everybody else formulate their thoughts of how this story was going to go down.  

Five years and almost nine months later, I am still telling this story.  It is still being written.  

The last few months have been filled with seemingly endless busy-ness as I guess life overall just is.  Summer is basically a hamster wheel that never really stops spinning and then rolls right into the start of a new school year.  The beginning of school is always a little rocky, this one in particular because middle school.  It apparently brings on a whole set of emotions that range from excitability to fear to melt down in the span of an hour - here we go!  Smack-dab in the middle of this chaos was scan week.  Impeccable timing some might say, but cancer doesn’t really fit into anyone’s schedule.  There is nothing like a group of medical professionals viewing your insides looking for traces of tumor growth to give you some clarity on life.  

In short, my scans are fine.  Crystal clear.  It actually reads, “no evidence of metastatic disease” because I just read it myself to be sure.  My blood is fine too.  The leukemia cells can’t really be found even at the smallest molecular level so that box of cancer-fighting gold that’s delivered on my doorstep every month is doing it’s job.  This, my friends, is amazing.  And, now I have even more evidence to prove that it is. Physical and numerical in the form of charts, graphs, and percentages.  

I met with my new doctor, Dr. Johnson, who I endearingly refer to in my head as Bill Nye the Science Guy.  We are not the same but kind of.  He is numbers and science trying to stop tumor growth.  I am a mother, trying to make all of the practices and meetings, work, and foster healthy social and emotional growth in kids.  Now, “Bill” and I go way back - on paper and in a lab at least, because he got the pleasure of studying my case from the beginning and analyzing my tumors probably before he met the actual me, bless his heart.   I know this because he told me once about all of my “mutations.”  So we sat in the clinic the other day and discussed scans, new studies that were out, and the effectiveness of these new drugs.  He asked me if I had read the recent five year results of the study I was on.  I replied with a simple “no,” but in my head I was thinking of how when those results came out, I was probably sitting at the baseball park, or running carpool to dance lessons and maybe slightly embarrassed that I didn’t even know the results came out.  In summary, the drug that I was on had about a 30% response rate for what’s called progression free survival.  So, it works in about 1/3 of people who don’t grow new cancer while they are on it.  Not me.  I’m not even in the 1/3 because I grew a big fat spinal tumor while I was on it. Pretty sure they didn’t measure that.  

It took me a few days but I decided to look up those study results and read them for myself.  I did so on Saturday morning while I was making scrambled eggs for my kids.  So, I’m standing there in the kitchen trying to make sense of it all and the truth is that it doesn’t make sense. Now, I’m not a numbers person.  I can’t even do a spreadsheet.  They give me anxiety with the cells and rows and whatnot.  I was standing there stirring eggs and reading numbers that basically accounted for my life.  It is just hard to wrap my mind around it.  I came down to the side-effects graph and there’s stuff listed like nausea, and rash, and then there’s this one tiny fraction of 1/17 that contracted another “neoplasm” (Fancy Nancy for cancer) called chronic myeloid leukemia.  So there I am.  I am a number.  A single number in a graph on a chart in a study.

What actually came to my mind when I was reading this is the verse, Luke 12:7 - “Indeed, the very hairs of your head are all numbered.  Don’t be afraid; you are worth more than many sparrows.”  When I was a child I used to think a lot about that verse as I brushed my hair because clearly I had a very literal sense of it’s meaning.  But, now it seemed crystal clear.  God knows me.  I matter.  He not only knows how much hair I have, don’t have, and how many are gray, but he values me enough to allow me to open and close so many doors to lead to a clinical research study, to lead to another major cancer, to lead to a chart-full of data that I would read years later while standing in my kitchen and it would shout my worth to Him in black and white and leave my crying in my kid’s eggs. 

What that number also doesn’t say is that I am very much alive.  I am very much walking around and shuffling my kids here and there to give them the best life possible, all the while planning in my head if that this scan is not what I hope, how I will schedule cancer treatment with church activities, play practice, cross country, dance, baseball, and homework.  What it also doesn’t say is what kind of life cancer has taught me to live fully and completely and in four month increments of time.  What kind of responsibility defying odds has brought for me.  What kind of perspective on life I have been given, what kind of empathy I have for those who struggle.  I spend time in prayer for friends and strangers who have cancer and are fighting because I know the fight.  I attend a funeral of a little boy who I grew to love and who possibly left this earth because “his body could no longer contain his spirit”  all the while thinking how hard I’ve tried to hold onto every aspect of my children’s lives and cannot fathom how these parents will go on.  I comfort my middle schooler, holding back laughter, because change is hard and he actually exclaims with dramatic flair as I shove him out of the car on the first day, “I’m going to die!”  I encourage my daughter and she tries out for the school play but remind her that it’s just a play.  I hold them tight, I put my fingers through their reddish hair and love how their lanky legs peek further under their shorts as they grow.  

I fully know that I am not exempt from the stuff of life but have to keep my eye on the bigger picture.  On the very same day that I spent 6 hours driving and 3 hours in a cold sterile machine with an IV in my arm, I also spent half of what my car was worth on repairs, drove from a cancer clinic directly to a third grade curriculum meeting, picked my son up from cross country, and went to two different office supply stores to find a much needed locker shelf for my 6th grader before going through the Chick-fil-A drive through for dinner at 9:00.  I had to do none of this really.  I could have declared myself finished for the day and gone to bed, but in a day where I control nothing, this craziness gave me a little control.  And, quite simply, I can.  There was a time when people sent me pictures of my children reading at school because I couldn’t be there to see them so now that I can, I will.  It doesn’t stop me from being annoyed at the lady in curriculum night with the big PTA letters on her shirt on asking if she has to pay a workbook fee for our free and fabulous public school, or the other lady asking how her child will be honored if he makes straight A’s.  Instead it causes me to think about what I want for my two children who to the world are pretty average and my answer is really just happy and kind.  

And that story?  Well, I wrote the part that has been written for Vanderbilt because they asked me to, realizing later that I wrote it just as much for myself.  I deliberated over it for weeks because it’s a lot for 1700 words. I even left out the third cancer because sometimes too much is just too much, and then sent it to a friend to edit for me.  Vanderbilt sent a fancy photographer with real equipment to my house last spring.  We tried to look our best and clean up our act around here for at least that hour.  The article came out and was published on social media and in their magazine.  We watched as it was liked and shared and people commented.  Strangers commented on how it gave them hope, and gave God the credit.  Exactly what I had hoped would happen. 

I was back in that cancer clinic the other day that I’ve walked into and out of so many times. Some of them broken, full of cancer, full of defeat, searching for joy, searching for hope, some of them not walking at all, some of them in disbelief that the diseases I’m fighting are no longer there.  And this day, I walked out holding that magazine, with my smiling face on a full page, playing in a sandbox.  No sign of cancer in my body.  I just can’t help but laugh.  Who would have ever guessed this is where it would go?  So, what do you do with that?  Well, you continue life with perspective, you eat lunch with your best friend, and you drive through Dairy Queen for a blizzard on the way home so you can pull in the driveway in time to pick up your kid from practice.  You sing a few verses of “Great is Thy Faithfulness” because it is.  His mercies are new every day.  Even if the day hadn’t been this way, He is still faithful.   

As I toasted Stephen to a good day with that Oreo Blizzard, his watch slid down and  I saw the tattoo - my name and then names of our kids in a circle around his wrist.  He didn’t have to tattoo it on his arm for me to know that I married a man who’s story was written to collide with mine and complete me as a person, to write our story together.  As sure as that tattoo on his wrist, he intends to keep his little circle of people in tact and together.  It’s a physical reminder of his love that came out of what was the absolute pit of our lives.  No doubt that my story is still being written, as all of ours are.  God writes our stories in phases of our lives and He counts the numbers of hairs on our heads.  He doesn’t reveal what is to come because all of it is in His timing.  Cancer is not what I wanted.  It wasn’t in my plan.  It was in His.  It has taught me patience, empathy, kindness, and perseverance, how to love more deeply and fully.  

I have no idea what is yet to be written, none of us do, but if our lives end because our bodies can no longer contain our spirits, the world will be a much better place. 

“Great is Thy faithfulness! 

Great is Thy faithfulness! 

Morning by morning new mercies I see;

All I have needed Thy hand hath provided - 

Great is Thy faithfulness,

Lord, unto me!”

Jesus. Science. Grace. 

Love, 

Kimberly 

eight is great!

Dear my Martha Kate, 

Today you are eight!  And, let me tell you, you make eight look really great!  It has been such a fun year of watching you grow.  You lost a lot of teeth this year (six!), mostly all at the same time, so for a while you couldn’t eat corn or apples, and whistling was a little tricky.  Now that your two big front teeth are in, sometimes you look so grown up!  Your personality has not stopped growing either.  You are a busy bouncing ball of sunshine.  You love to play outside and love to swing - the higher the better.  You like to climb to the top of the fort and swing from the rope to jump on the swing.  

You pick every flower, even if it’s a weed and never leave a dandelion unblown.  They are all beautiful in your eyes and you have made me see how beautiful they are too.  Most of them you give to me and I put in a vase but sometimes when I clean out my car, I find some little wilty ones in the cupholder and I think about you.  

Music makes you so happy.  We love watching you belt it out in the rearview mirror and listening to you sing when daddy plays the guitar.  You like all kinds - pop songs, country songs, daddy’s 80’s hair band songs, church songs, and you know all the words after you hear it one time.  You asked for a microphone for Christmas and sang for a solid hour while dancing on the kitchen chairs on Christmas morning.  You sang your first little solo in church this year, “This Little Light of Mine.”  It was perfect for you because we watch your little light shine all the time.  Your G-Daddy even built you a stage for your room and made it extra big so you wouldn’t fall off if the music made you move a lot. 

Your creative little mind never stops turning.  You make things and paint things and draw things constantly.  You came home from school with a Kleenex box and turned it into a guitar.  I am always looking for my stapler or my tape but it is usually gone because you have used it all with your creations.  That’s ok, I can just buy more tape!  You also like to write stories and song lyrics, and they are really good because you also draw pictures to go with them.  You love to make cards because you are so thoughtful.  I have them on little pieces of paper all over the house and they remind me of how deeply you love and how giving you are.  I love how you always make my hair look extra good in your drawings.  You are even giving to your brother and bought him a gift with your own money for his birthday.  He’s lucky to have you.  

You wrote this about yourself! "
"I also love to color and love life."

We never thought you were the athletic type, but you tried soccer this year and you were really fast!  It was really exciting to watch you fly across that field and score goals.  I think you were excited too - almost as excited as you were about the pink cleats you got to wear.  You definitely have your own sense of fashion and the soccer field proved to be no exception.  

You have loved school this year, mostly because you have learned to read really well.   You love books and most nights after you go to sleep, I come in and move all of the books off of your bed.  I enjoy reviewing your graded papers with you because you always have a good explanation for your answers, like when you wrote, “slippery” for how an object would move more easily and went on to demonstrate how if you poured sunscreen on the floor, the object would slide.  I made perfect sense to me, but school sometimes likes for you to get the answers from the paragraph instead of making up your own.  You also got a little worried about testing this year because you might not be able to out of your seat to change pencils or walk around, but the extra recess and snacks made it better.  You teach me not to take things in life so seriously and to look for the positive when you have to do hard things.  

You are also my good helper.  You are never far from my side, so you just help me with my work.  You also help me find my keys and help me to remember the snacks when we go on a trip.  I love to hear your little voice chattering away when I’m holding your hand and we are walking together.  You are overflowing with ideas and questions.  I try to answer them all because I know that’s how you learn.  Last night, we looked at the pictures from when you were born and you loved hearing stories of what you were like as a baby.  You were so tiny and feisty and so loved.  That has not changed.  

Martha Kate, you bring us such joy!  Your free spirit is so contagious and you make people around you so happy - that is such a gift!  There is so much love and life in your little forty pound body that it’s hard to contain sometimes.  It is a pleasure to watch you grow.  You are a girl with purpose and an opinion who is not afraid to make it known.  I admire your contentment and your confidence.  

You are eight.  You are great. 

I love you so very much!

Mommy

there's always donuts...

After school yesterday, I took the kids to Kroger to choose Mother’s Day cards.  After six years, it’s still tough for me to read through cards and not pick out one for my own mother, so I’m glad they can read and choose for themselves.  The compromise is a little tough when one is asking where the inappropriate cards are and the other is mesmerized by the pink glitter pop-up ones, but they moved on after being distracted by the toys and the discovery of POP TOOBS - those plastic accordion things you pull apart and they make a loud noise.  I shared my memory of how they once came in McDonald’s Happy Meals and they preceded to discover that the faster you pull the louder it gets.  So there they were whooping it up and acting like fools in the card isle while all the women were choosing sentiments for their moms.  I suddenly felt really good about where I am in life.  I soaked up their joy for a moment before I moved them onto the donut display because that’s what my mom would have done.  Let them be kids.  

Everyday I kiss them goodbye and watch them walk out the door with their backpacks.  Everyday they are a little bigger, a little older, and have a tiny bit more life experience.  Sometimes I pull them back in, hug them once more and put their faces in my hands just to take in their freckles and eyelashes.  They are growing.  This is exactly what I wanted to see.  They are lovely humans with spunk and humor and personality.   Sometime last week, I realized that I have moved from kissing boo-boos and hand holding to nurturing souls and comforting spirits.  There is always the one mean kid who  looks for someone else’s insecurities and goes after them, causing tears and crushing confidence.  There are the girls who aren’t inclusive, hurting feelings and breaking hearts.  There are the teams they won’t make, the goals they won’t score.  There are the choices they will make and the consequences that may have to come.  I know that the punk kid will grow up to be the obnoxious adult but it’s hard for an eleven year old to see that trajectory.  Kroger donuts won’t always fix it but it won’t stop me from trying.  

I hear my mother’s voice over and over as I mother my own children. She’s laughing when my girl comes downstairs in heels and a fairy dress to go swing because she thinks it will make her fly.  She’s agreeing with me that it’s not fair because he tried really hard and wants it more than the other kids.  She’s reminding me how many scraps of paper she used to pick up in my room when I’m picking confetti out of the carpet.  She’s reminding me to let them figure it out, even though it’s hard to watch.  She’s telling me that she knew they could do it when I doubted. I think how she didn’t put up with anybody’s mess, how she only needed to give us a look to make us straighten up, and how she beamed with pride at anything we accomplished.  The things she taught me are engrained in my being and not only do I hear her, I am so much her. 

Teaching was her career, but also her life.  A friend of my mom’s gave me some of her school papers a while back.  I sat and read through them - articles of her students that were recognized, her teacher evaluations, things she had written in her perfect cursive writing, and some of my report cards and grades interspersed.  I stopped on the plastic covered report for “Teacher of the Year.”  It was from 1993 and there was a picture of her on the front with big triangle hair wearing a lace collared puffy sleeve dress.  The whole thing was typed by hand on a typewriter, no less.  (The typewriter came out in my house when it was something important or “official.”  There was a bottle of white-out really handy and she reminded me over and over how she nearly failed typing in high school as she pecked away at the keys, uttering a “shoot!” here and there.)  There was no doubt hours of work in this, worthy of the report cover.  It listed her accomplishments, her family life, and then there was a page and a half of her teaching philosophy which was founded on three basic principles - consistency, honesty, and love.  

Some of my favorite things she said were, “We need to show children it’s not where you start, but where you finish that counts,” and “We need to follow through with what we promise.”  By reading this I confirmed that a) her brilliance would never be overshadowed by her 90‘s hairdo and b) my brother and I had basically spent our entire childhood inside the walls of an elementary school classroom without knowing it.  She figured if it worked at school, it would work at home or vice versa and she was probably too tired for another strategy.   

Motherhood is not what anyone expects. I was so disappointed in the “What to Expect When You’re Expecting” book that I read to about the seventh month and donated it to Goodwill.  I certainly did not expect that five years into this gig, I would figure out how to simultaneously survive and mother some toddlers.  

What you can expect as a mother is to fall completely and hopelessly in love with small humans.  You can expect to feel what they are feeling.  You can expect to envision yourself walking out to collect him from the pitcher’s mound but you grip your fingers to the seat.  You can expect find yourself mad over the money you spent on dance lessons until she puts on the costume and her whole being is transformed.  You can expect to find joy in the first frogs of the season and eating tiny sandwiches on the floor at her tea party.  You can expect to trial and error and second guess your way through eighteen years and hope that end the end you end up with an adult who loves God and loves people. You can expect to rise up and will yourself to live for the sake of their futures.  You can expect that at the end of the day you will fall back on honesty, consistency, and love.  And, when all else fails, you can expect that Kroger will have donuts.    

Happy Mother’s Day!  

kj

I DOT WUT TO

When I was in high school, I was on the school newspaper staff.  Every year, the seniors got to publish a list their likes and dislikes at the end of the year.  It was so fun to read and as staff we got to cut and paste like professionals (probably using actual scissors) as we read through them.   They were mostly inside jokes or something that alluded to something that went on in 9th grade that forever (or for at least four years) bonded so and so.  At nearly forty, it’s a good idea to have a clear understanding of what you like and don’t like so you can either do more of them or avoid them.  

My documented list of yeses officially started on my birthday.  My list of no thank yous while shorter, is pretty solid - Brussels sprouts, socks with no elastic, cockroaches, empty toilet paper rolls, artificial sweetener, etc.  A few years back when Martha Kate was in kindergarten, she apparently did not want to complete the rest of her work, so she put a big ole “X” over it and wrote the words, “I DOT WUT TO.”  (This paper is framed in my bathroom right above the portrait of Bailey's kindergarten self with a big ole erased pile of poo drawn under it.  Because that’s the kind of mother that I am). So when adding to the “no” list I always think of her big ole “X.”  I had a little extra time to think this week and as I was adding to my list, I realized that there are things that I want to draw a big ole “X” over but they just don’t go away.  Here’s a few: 

brain scans, unsolicited advice, and public restroom hand dryers

It was brain scan week.  That in itself is enough to send anyone into orbit.  This was my 7th one in 5 years so while one would think it may be old hat, it’s so not.  La-ti-da...just lie on your back and relax while you freeze to death with your head in a cage, wearing earplugs and extra face-squishing foam, and let the jack hammers draw pictures of your noggin.  While mirrors typically make a space look larger, the tiny one that is 2 inches from your eyeballs does not.  It does allow you to check your mascara application, but if you look closer it actually reflects into the imaging room so you can really freak yourself out about what they are seeing. I’m just thankful that it’s not recording real-time thoughts.  Around my second brain scan I lay there praying and remembered 2 Timothy 1:7 and that became my brain scan verse.  The “sound mind” part is subjective but the way I see it is that God does not want me to be afraid and whatever is on the other side of that picture, He has given me enough sense to make a decision about.  The good news is that mine is normal (again, subjective) and the other news is that I can’t avoid them because melanoma loves the brain and since I’ve already had it in my spine, a frightening 6 inches from there, it’s kind of necessary.  

As for unsolicited advice, or “free” advice, I’ve been the recipient of much.  These are the sentences that start with “You should...” or sometimes “Why don’t you...” (See also the unfiltered comment).  A cancer diagnosis warrants both, and truly some advice has been really sound and I get my best material from unfiltered comments.  

The tech in the MRI this week asked why I was there and when I gave her the short version, she said, 

“Well, you are way to young to be dealing with all of this.”  

Unfiltered.  

I said, “I thought so too, until I walked into the cancer clinic and didn’t see an age discrimination sign.” 

Silence.  

My exception to the unsolicited advice is when it comes from anyone over 80, because it will either be very sound and backed up by life experience or so hysterically funny that you need to hear it.  The other exception is your mama because, well, she’s earned it.  The bottom line is I can’t avoid this either, so I will use it to my advantage and just refrain from giving it.  

As for the hand dryers.  I’ve used a lot of public restrooms this week.  Those things are everywhere with no paper towel option.  You wash your hands, turn around for the towel, only to see the blower.  Your faced with a decision - push the button or walk away.  For all the racket, there should be instant evaporation, but instead they blow water (or the actual loose skin) around on your hands and then turn off, leaving you dripping and wiping on your clothes.  If you have a small child with you, the child either flaps and sprays water everywhere or wipes her hands on YOUR clothes to avoid the loud noise.  Handwashing is necessary, apparently drying is optional.  Just going to deal.  

Now, onto my appointment on Tuesday.  The short of it is that it was good, really good.  I stand in amazement that the scans are clear.  Nothing there.  I actually just pulled them up and read them once more just to be sure.  Not the tumor in my spine that had once cut off the blood flow to my spinal cord, not the one that was pressing into my airway, or the one in my diaphragm, or my adrenal gland, or the other 10 or so that were scattered around.  Nothing.  Completely melted away sometime over three years ago and I’m holding steady.  Every day is a gift, not promised, but borrowed with the intent to make the most of it.  As my doctor told me, “no one knows the curve on this” because the curve is still being written - partially by yours truly.  My hematology visit, two floors up, immediately following oncology, also good.  My leukemia remains in remission, what my hematologist refers to as a deep remission with stable molecular levels (basically the only way to find any sign of leukemia in my body is to dig through the DNA and then there’s only a tiny trace).  I achieved this milestone about six months after I was diagnosed, but it takes many people three years or so.  We discussed studies that are going on in France that may allow CML patients who are in remission to come off of the drug at some point. Frankly, I’m ok with what I’ve got going - if it ain’t broke, well you know.

So my visit was good, but one of the toughest.  A few weeks ago, I got a letter in the mail from Vanderbilt.  I get dozens of Vanderbilt envelopes - mostly because I owe them money or they want a donation.  This one was from Dr. Sosman informing his patients that he will soon be practicing at Northwestern in Chicago.  I called Stephen and asked him how he felt about it we mutually agreed upon “sick.”  Well, I was angry, but the sick and sad kind of angry.  We just walked around the house saying, “sick.” over and over, only I couldn’t really say it without tearing up.  Big ole honking “X.” 

Sometime during one of those critical life-saving treatment decision times, Dr. Sosman looked at me and said, “Let’s get you well, because I want to see you in ten years.”  I took that to heart but I also took that to mean that he would actually be the one to see me.  My thoughts that day were, “well, ok, buddy if you’re going to talk about ten years from now, I’m going to do my part.” He may not know how much that statement actually fueled my inner cockroach climbing out of the puddle of Raid, but it did.  

Immediately following receiving the letter, I sent Dr. Sosman a text that I was not happy about this and that I hoped he had negotiated my travel expenses into his new salary.  Wouldn’t you want to have me for a patient?  When he opened the door to the room the other day, he said, “I wasn’t sure you were going to come.”  Ha!  He knows me well.  It was a sad sort of visit, but very endearing.  I may or may not have been as worried about holding it together than the actual scans.  We all cried and he hugged us both about four times.  I was hoping to walk away with more clarity on what to do (or a plane ticket) but I did walk away knowing that he has invested as much into me as I have in him.  We have history.  

So, here we are faced with decisions that I DOT WUT TO make.  I wasn’t looking for a new doctor.  I wasn’t looking to continue my medical care in two cities that are not even close to each other or to the one I actually live in.  I wasn’t looking to figure out the finances and logistics of it all.  But what I do know is that it will work out.  I’m doing great medically and I’ve got time to figure it out.  What a great place to be.  God has always provided.  For 1,945 days of cancer, God has provided.  We have traveled to Nashville and home so many times and never once has a need not been met.  

I will use last week as an example.  Our trips are a two day affair.  I go up on Monday, get scans and bloodwork and then Stephen goes back with me for results on Tuesday.  Two oncologists is too much to cram into one day.  The biggest (unsolicited) question I get asked is “Why don’t you spend the night?” or “You should spend the night.”  My reasons are simple - while disrupting my life a little, it minimizes disruption for my children.  They are first, always have been.  To parent small children in the face of uncertainty, fear, and pure chaos is no small task.  We have been at this for over five years.  By God’s grace, our children are fairly well-adjusted, happy, and oh so loved.  My son who was a kindergartner when I was diagnosed, will soon go to middle school.  And, according to the picture my daughter drew in her Sunday School class this morning, she understands perseverence.  What may seem or have seemed to an outsider as a seamless transition between normal life and cancer, is really not all that seamless.  

I have sat and cried with Bailey when he was scared and we both knew that I may end up in the hospital and not back at home later that night.  I have tiptoed through many dark mornings so they wouldn’t wake up and cry with anxiety that I was leaving before school.  I have spent months building back the trust that every time their precious grandparents showed up, we were not going to medical appointments.  So, when I’m washing a baseball uniform at midnight before scan day, signing folders, writing notes for lunchboxes, and packing soccer practice clothes, it gives me peace.  And, when I walk up at the start of his baseball game and he gives me this half smile and wave from the dugout, he knows I’m there, and he’s ok.  I can give him that. When I get to kiss her and take a picture before her soccer practice and reassure her that I will see her after, she’s elated. When it’s “wear owl day” at school and he asks me where his Hooter’s shirt is and I bust out laughing, my entire extra 400 miles is totally worth it.  

And selfishly, when much of my day looks like this:

blue suede shoes because Memphis 

 I'd like to end it like this.

What’s cool is that make this happen, to allow Stephen and me to parent seamlessly, God provided an entire village.  Six different people disrupted their own lives to make ours easier - company, food, practice, dogs, kid shuffle, and lunchdates.  The rest of them are praying, waiting, hoping, and texting to see if we need anything.  The truth is that over five years into this, I have to turn down help because I have more offers than I need.  That is amazing.  So, He will provide.  He always does.  I have quit trying to understand the why and the timing and the logistics but it doesn’t keep me from wanting to draw a big old “X,” over the whole deal sometimes.  But, I am here.  I am breathing, walking, mothering, and living out this miracle I call life.  

Last Sunday, our pastor’s sermon was on how we see Jesus when we are called outside our comfort zone, and immediately following that was our Sunday School lesson on Romans 5 where Romans 5:3 was highlighted in my Bible.  So, going into scan day, it was apparent that A) I am not supposed to be comfortable and B) this has been one big fat exercise in character building.  

Awesome.  Bring it on! 

Thank you for your prayers, thank you for your encouragement, and thank you for never giving up.  Love, KJ