Wednesday, January 13, 2016

Eleven.

Eleven.  Today you are eleven!  

As I write this, I remember the cold January eleven years ago when I couldn’t wait to meet you.  I couldn’t wait to see what you looked like and to hold you in my arms.  You made me wait an extra week so I started learning to be patient really early with you - one of the best things you could teach me.

I am so proud of who you are and who I see you becoming.  This is your last year of elementary school.  I realized that this summer when you were standing in front of the school releasing Nana’s birthday balloons and it made me both happy and sad.  Next year you will go to middle school and it will be full of new and exciting adventures and more independence.  I will learn a lot more about how to be your mother.

This year, I have watched you become more responsible.  You set goals for yourself and work really hard to meet them.  You saved all of your money this year from birthdays, Christmas, leaf raking, and pulled teeth, to buy nice sunglasses and now an iPad which is awesome!  You are much more responsible with your schoolwork this year too.  And, even though you and I have spent hours studying and researching for your social studies projects on Abraham Lincoln and World War I, I wouldn’t trade my time with you for anything in the world.  I love to watch you succeed because it drives you to set higher goals for yourself and helps you have confidence that you can meet your goals.  I  know you get frustrated sometimes but it is always because you expect more for yourself and we want that for you too.  You already have a pretty good idea that life is not easy and good things come with hard work and perseverance. 

Bailey, you just crack us up.  Your sense of humor, knack for impressions, and the way you can sum up a situation - serious or humorous - in about three words is hilarious.  Nothing gets by you.  You notice how people talk, what they wear, and can give a dead-on impression of their mannerisms.  I love the little smirk that comes over your face and the look you give me when something is so funny but it’s inappropriate to laugh in public and how tickled we get later when we talk about it.  I also love how you walk in circles around the house talking to me and telling me about your day, what people did at school, and what happened on the video that you watched on TV.  You teach me how things work and remind me to slow down and pay attention to details.  

You love sports - watching them and playing them and you'd rather be outside than anywhere else.  You have become your daddy’s sidekick at Mississippi State football games and between then two of you, I’ve never seen so much anxiety over a ball and a bunch of grown men.  You also love to eat.  The kids meal days are over for us and I knew this when you ordered shrimp and grits at a nice restaurant and there were no leftovers for me to try.  You watch Food Network and plan when we can go to Guy Fieri’s featured diner.  You educate me on how to use my phone, how to work the TV, and soon you will know much more than me about how to use my computer.  It’s scary but also useful.  And, you sure do love that dog, and he knows it.  I tell him that the only thing keeping him here sometimes is his looks but it’s also because of how much you love him.  

I have watched you realize what it means to be grateful.  You are content and thankful for what you have most of the time.  You are thoughtful and make sure that everyone around you is taken care of - you did great helping your daddy with Christmas shopping this year!  Your teachers and coaches also recognize your sweet spirit and we are so proud when you are complimented on your character.  You keep a watchful eye on your sister which is extra helpful for me, even though she acts like she’s annoyed.  

Bailey, you are a joy! You know how to love, you know how to give, and you have high expectations for yourself and others.  You are honest and dependable and I am proud that you are my son.  We pray that you will grow to love God and love others as He loves us.  

Happy Eleventh Birthday!

I love you, 

Mom











Saturday, January 2, 2016

FIVE



21 3/4 inches of growing children
18 visits from the tooth fairy
7 honors ceremonies
2 school plays
1 preschool graduation
2 preschool Christmas programs
10 school Christmas parties
6 church choir programs
5 first days of school
5 birthdays
10 (semi) planned birthday parties
5 anniversaries
2 kindergarten graduations
6 Christmases
5 sets of Halloween costumes
5 seasons of Mississippi State football
9 little league baseball seasons
2 dance recitals
over 50 scans
over 60 weeks of treatments
180 boxes of chemo pills
one unlikely survival speech
countless vials of blood 
one magazine article
three cancers
two surgeries
one pair of worn-in cowboy boots
a few more wrinkles
a few more gray hairs
one tattoo
one amazing race
and countless prayers, tears, laughs, fears, and what-ifs later...

I woke up to 2016.  

Stephen and I stood numbly in a doctor’s office five years ago and he said, “I need you to teach me how to fix her hair.”  I have fixed hair almost every day for the last 1,846 days.  Granted, some days it has looked better than others, but so has mine.  I have also facilitated teeth brushing at least twice a day which is no small task.

Five years.

I kind of wondered what I would do if I hit the five year mark.  The answer is really nothing.  Stephen and I kicked off the Christmas season and called ourselves celebrating in Chicago a few weeks ago.  We took our first trip there together for my 33rd birthday.  Later that year, we were pretty sure we’d never be back.  In 2012, we did go back.  I walked his tail all over Michigan Avenue and up and down State Street.  He never said a word, just watched me walk and was glad I could.  As a trade off, I sat through the coldest Bears game of my life.  We’ve been every year since.  

This year’s trip was not without roadblocks as we ended up in Texas before we got to Chicago.  I sat in the airport laughing at the irony as I remembered so vividly of how five years before I somehow ended up in Texas in a cancer clinic.  The three hour delay didn’t seem so bad this time.  Five years ago, Stephen was begging everyone at the airport to find another flight to make our appointment on time because of a weather delay.  This year there was also a weather delay, a canceled flight, and we barely missed the earlier connecting flight even though we ran from the plane like we were on fire.  We stood at the counter with a businessman who had the last seat but probably would have given it up as he asked, “Do you HAVE to get there?”  Our answer was no.  No we don’t.  We don’t have to be anywhere.  No cancer clinic, no brain MRI, no first opinion, no second opinion.  We can just sit in the Texas airport for 3 hours, drink coffee, and look at the boot store.  Stephen can predict that the band members from Great White and Slaughter might possibly based on his Twitter tour schedule research and disappear to spot them a the Dunkin Donuts.  And then just for fun, I can walk over and say hi to them.  No panic, just an “oh well.”  We’re used to waiting by now.  

My actual cancerversary was spent wrapping up the school year with fifth grade social studies projects, school Christmas parties, and an excited boy and girl who look forward to a few weeks with no reading or spelling and all the joy that Christmas has to offer.  We anticipated celebrated the birth of baby Jesus who forever changed our hope.   We ate dinners with friends and talked about how what happened five years ago brought us together, made us closer, and prepared us for the changes on the road ahead.  We celebrated the life of my grandmother who decided to spend her 98th Christmas in heaven.  I’m sure my mom was glad to have her.  I also took time to blow out my candle on my Christmas Tree cake.  Stephen looked at me and said, “Today is proof that statistics don’t matter.”

This season has not been without thought of what we have experienced and what we are thankful for.  I remember walking into our church’s Santa breakfast five years ago, two days after my world changed with my little two year old and five year old.  I was going through the motions, playing Christmas.  People stared, surprised to see me - most of whom I barely knew but no one knew what to say.  I didn’t know either.  Our family went to Christmas Eve service for the first time and as I watched Kate walk up to the front in her tinsel angel halo, I wondered what the next Christmas would look like. The next year, every ornament I put on the tree caused a pinching stabbing pain from the spinal tumor I would soon discover I had.  

This year, Stephen played the guitar at the Christmas Eve Service.  He strummed, “Hark the Herald Angels Sing...” while my now seven year old walked up in her tinsel halo with the other children.  My now ten year old sat close to me and giggled at the little kids who cried and ran back and forth to their parents.  The service was loud and full of joy, just like a birthday should be.  On Christmas morning we opened boxes that our little girl wrapped - hand colored ornaments, paintings that they had done, and presents that they picked out from the church’s alternative Christmas, because they now understand the importance and joy of giving.  My boy curled up next to me and educated me on iPhones and Instagram because he knows how to love.  She sang to the top of her lungs into a pink microphone while I made pancakes on Christmas morning.  They jumped until they were sore in the freezing cold on a trampoline that they never dreamed of getting.  We screamed and yelled like real people do as we loaded up all the dogs and the kids and gifts to go have Christmas with the grandparents.  

Statistics don’t matter.  They don’t.  When it was all said and done, my chances were approximately zero making me keenly aware that every day is nothing short of a gift.  I have thought a lot about what Stephen said and determined that maybe the statistics do matter.  They have mattered to us more than we like to admit.  They have been the reference point to the miracle we experienced.  Our expectations were so low that up seemed too far to imagine.  My trajectory of forward movement is one based on what could have been.  It’s not coincidental.  God wants us to expect more.  He wants us to expect the miracle.  

There is a saying that life is not measured by the number of breaths you take, but by the number of moments that take your breath away.  Maybe so.  But, if I walk around waiting for my breath to be taken away, I might end up disappointed.  So I kind of measure the breaths, or don’t try to measure life at all.  I don't worry about if it measures up - just live it and enjoy it.  If I wake up breathing, then it’s a good thing and there’s joy to find.  Some days I find myself breathing deep to get through it or holding my breath for just a minute because that seems more appropriate.  Either way, I’m glad to be living it. 

So, here’s to a happy and new 2016.  May it be full of living, loving, breathing, and immeasurable joy.

Happy New Year!

KJ










Chicago 2015
Chicago 2010

Thursday, December 24, 2015

Jesus was human.

manger by MKJ
December 3, 2015
Luke 2:11
For there is born to you this day in the city of David a Savior, who is Christ the Lord.
I've never met a baby I didn't like. There's something so pure and innocent about a baby - their skin is soft and smooth, no wrinkles from worry or gravity. They have perfect lips, eyelashes, fingers, and toes. They thrive on the affection and attention of others and through their innocence bring joy and peace. No matter what the mood of the room is or the crowd - young, old, rich, poor - if you plop a cute drooly baby in the middle, people are instantly happy. As a mother, no matter the problems or stresses of the day, it all seemed to melt away when I rocked my own babies to sleep. Now that they are older, I still take every opportunity I get to memorize their freckles, their eyelashes, their scars from the boo-boos I once kissed. 

I also get to hold other people's babies for a living. I have found myself in a career where mothers and fathers entrust me to help the world's most innocent assets. Many of them are fragile - born with medical problems or have special needs that require more care than the average baby. 

I have the pleasure of seeing many of them in their homes, but with this comes a raw and real representation of how difficult parenting can actually be. As I sit and talk with them through problems that I have not faced as a mother, I often realize how inadequate I am and how strong others are. Seemingly simple things are sometimes so hard for these families but what is not ever hard is loving them. What also never changes is the way these children love you back. I am always honored to hold someone else's baby and to tell them how lovely and special they are or sit in the middle of a toddler classroom and have a few little chubby-legged babies climb on my lap. 

When I think of Christmas, I think of the way God formed a human connection with all of us by sending a perfect baby to earth. He showed us the most innocent and pure way to love someone by sending a newborn - undoubtedly with perfect skin and eyelashes. He allowed that child to walk around among us - the broken, the innocent, the different, the fragile - and to experience disappointment, rejection, acceptance, and love as we all do. I take comfort in knowing that my Jesus was human. 

All year in our home, I keep a painting of the manger and a sign that reads, "REJOICE! - For there is born to you this day in the city of David a Savior, who is Christ the Lord." (Luke 2:11). They are reminders to me that Jesus was human too.

Kimberly Jessop
Emmanuel Class

Dear Lord, thank you for showing us love and humanity through the miracle of Christmas. Help us to remember to love others as You do this Christmas season.

Friday, December 4, 2015

Dear Cancer Clinic...

I’ve spent hundreds of hours in cancer clinics in my life.  There is probably not one single place I dislike more than a doctor’s office or hospital.  If there was one single thing that I ever was most afraid of, it would be cancer.  For some reason, the irony of all of this was extra apparent to me this week.  I sat there on Tuesday, Stephen by my side, both of us in our minds playing Russian Roulette.  You can’t help but overthink it.  

After twenty-five hours of waiting, driving, and testing, I walked out of there with clear scans.  Just go back to living - that simple.  Go eat some chicken and go home.  Go do laundry, help your son hot glue his fifth grade planet project and sign all the papers in the take-home folders.  Get your daughter’s dress ready for the daddy-daughter dance on Friday.  Plan your Christmas. Buy your gifts.  Plan your celebration dinner with your friends.  

God has placed me in uncomfortable.  He has done this purposefully.  This was His plan, His Jeremiah 29:11.  He has given me more grace than I deserve and though I have walked out of that clinic frustrated, confused, disappointed, amazed, and dumbfounded, I have never walked out of there ungrateful.  Never ungrateful for the way He shows me how loved I am and how much I have by showing me what it could be - what it has been.  This week more than ever, it was obvious.  The waiting was a lot longer, so maybe I had longer to think.  My introversion kicks in and I usually look down at my book or iPad but this time, for a few minutes, I stared down the hallway and watched doors open and close, people in and out.  I looked out the window and wondered what would happen if I just left now but I was pretty sure that wasn’t an option.  What would happen if I acted on my crazy and just started running?  It would make for a good story, but wouldn’t change anything. 

So in my mind, I wrote a letter to Cancer Clinic.  I decided we are not friends.  Our relationship is symbiotic - we exist on our own but need each other to survive.  (Thank you, fifth grade).  

I’ll visit again in four months, but in between that time, I will have Christmas, I will celebrate birthdays, I will go on trips, and go to concerts.  I will do school projects and look forward to a New Year.  Things will break and I will be inconvenienced.  A lot. 
I will be grateful, because I am.  


Dear Cancer Clinic,

I visited you today as I have over a hundred times.  I know your walls, your paint, your furniture, your chairs, your art in the hallways.  I’ve turned the corner to your driveway and every time I feel my throat swell and my heart race.  Cancer clinic, I won’t lie, you make me nervous.  
I watched you today during our visit, and I listened to you too.  I watched your people.  You see the sickest, the most broken - physically, emotionally, and spiritually.  You see the hopeless.  You see the hope.  You see the beginning and you watch the journey to the end.  
I watched the lady who talked too loud and too close about the sale she got on her new purse.  
I backed up when she got too close.  
I watched the pale lady with the mask who listened politely to her but probably wanted to run.  
I watched the weak and tired lady use her purse as a pillow in the waiting room.  
I watched and listened as the husband read his wife the brochure on the very cancer that I have. 
I watched the young girl with the baby who screamed and fussed until she went to sleep like we all wanted to do.  I wanted her to have a stroller. Or friends like mine that would take care of her baby.  But, then she probably wanted to hold her baby, to help distract her.  
I was one of your youngest visitors today but certainly not excluded.  
I watched as people moved from chair to chair and large waiting room to small waiting room with bags of pills, magazines, and family members that they have drug into this mess.  

I watched them stare at me too.  They stared at my boots and so did I.  I saw the steel peeking through the toe and thought of how funny they must have looked with hospital gowns.  I felt out of place but sort of liked it - because no one can really tell how much I need you.  

I looked down your hallway.  Shiny, waxed floors and rows of doors and hand sanitizer.  I listened to the nurse ask everyone loudly the same questions:
“Are you having any trouble feeding yourself?”
“Are you having any pain?” 
“Are you having any difficulty getting up and down?”
“Have you had a fever?”
I wondered if she ever gets bored.  I asked her if she ever made up questions.  She was  not into humor.   

I listened to the nurses talk about their kids.  I thought about my own kids and how I couldn’t wait to see them.  

I thought about your rooms and then I walked in and sat in one.  Once the door was closed, you could cut the silence with a knife.  Cancer clinic, you do not talk.  You do not distract.  Your paper table is scary.  Your silence is creepy.  I looked at your magazines but was not desperate enough for Golf Digest or the rodeo magazine.  

So, I looked at my phone and I waited.  
And waited.  

Cancer clinic, you have no schedule.  You give us a time to visit, but once we are in your doors, we cannot leave until you say.  You are demanding and consuming. I poured your coffee with powdered creamer and realized there was only decaf.  I was disappointed but drank it anyway and thought of real coffee with half and half.  I thought about how much more pleasant our visits would be if your friends met me on the bench out front and I never came inside.  I’m much better outside.  In the open space.  Less people to talk and stare.  Less hand sanitizer.  Less waxed floors.  We could discuss my scans and blood over Starbucks.
But I stay, like I always do.  I wanted to bolt but I waited for my turn.  

And my turn is good.  Inside of your walls, I am a star.  I shine with crystal clear scans and glow of health in comparison to so much broken.  In comparison to when I was so broken.  

So, Cancer Clinic, you have tools to heal and I need you.  I need you in spite of your unpleasant and your uncomfortable.  I need you to remind me that I am ok and that I can walk out of your doors and continue to live.  I can walk back into my messy life that’s chipped a little, but not broken.  I can walk back into the arms of my warm children who smell like outside and shampoo and school all at the same time.  I am reminded to be thankful that I’m not spending the night, that I’m able to walk away.    

So, thank you Cancer Clinic.  Thank you for showing me hope and broken and healing.  Thank you for teaching me patience and to be grateful.  Thank you for the glimpses of real that I get when I visit you.  Thank you for letting my husband, and my friends, and my God walk through the halls with me so that I am never alone.  

Sincerely, 



Me

Monday, October 19, 2015

That time I was in SELF...


Several months ago I was standing in Jet’s pizza on a Friday night trying to convince the cashier to use my coupon that I had accidentally left on the counter when the phone rang.  I saw that it was a Nashville number so I politely excused myself from the coupon convo and walked outside.  The sweet young voice on the other end was a girl from the PR department at Vandy who asked if I’d ever heard of a magazine called SELF.  

She went on to explain that SELF had talked with some of the doctors at Vandy and they were looking for stories for their October issue on women in cancer.  The focus has typically been about breast cancer but this year they wanted to look at other cancers that women get and focus on precision medicine.  She asked if it was true that I had benefitted from precision medicine and if would be willing to speak with them.  I agreed.  She explained that my story would have to be chosen so they may or may not call but needed my permission to give them my name.  I asked if she knew my story and when she said no, I gave her the 3 minute elevator version.  This resulted in her silence and I kind of felt bad because she probably just had a piece of paper with a list of names to call for permission and she may or may not have been an intern. After all, it WAS after 6:00 on a Friday night.  I thanked her for calling and assured her I was doing well, thanks to her kind friends at Vandy, but I would be doing better if this pizza guy would give me a discount.  

Several weeks went by and I had heard nothing so I figured either I scared the girl or they had all the stories they needed.  Then, on my way back from our last scan appointment in July I checked my email and there was this one:

Hi Kimberly,

I’m Kristin Canning, a writer for SELF Magazine. I’m working on real women stories for our October cancer package, and you were referred to my editors by Vanderbilt-Ingram Cancer Center. I’d love to interview you about your experience and treatments for melanoma. Would you be able to talk on the phone sometime early this week? Looking forward to hearing from you!

Thank you,

Kristin Canning
Editorial Assistant | SELF
Condé Nast | 1 World Trade Center| 37th floor
New York, NY 10007 | 212.286.3418

It looked pretty official to me.  Stephen was driving and playing “name the 80’s song.”  I told him that I couldn’t talk because I was busy responding to SELF magazine.  We set up a phone interview for the next day.  I left a work meeting early with a strategic plan to drive far enough outside of downtown Memphis to find a safe parking lot to sit in before the phone rang.  I’m sure that’s what most famous people do.  I think I ended up at Old Navy.  

So the phone did ring and I talked to Ms. Kristin for about an hour about what went down in my life since that day in December.  I gave her the fairly long synopsis of the last nearly five years and just when she thought I was finished, I would give her another dramatic detail.  There was lots of “hmm, I see..” from her and “How did you feel when the treatment didn’t work?” to which most of the answers were either kind of self-explanatory or “like I was going to die” and I started running out of adjectives.  I left out the squamous cell nose job incident because I felt like she had plenty of material.  Somewhere near the end of the hour I looked down at my scrub pants and my steering wheel and it hit me that I was sitting in my car in a parking lot recounting details of my life that I will always wish didn’t exist to a perfect stranger in New York City on Eastern time.   She had no idea how very ordinary I was and I was pretty sure that I was not magazine material.  In an effort to explain this I blurted out, “Look, I live the most normal kind of life.  Most people don’t know what I’ve been through and I don’t walk around telling them unless they ask.  I just try to live my life, to be a mom, a wife, and do my job.”  A few minutes later, we hung up and she said she’d get back with me.  I asked if she was actually planning on publishing this and she said, “Oh yes, it will go in the October issue.”  So that was that. 

I kind of wondered what she was thinking after we hung up.  I was thinking that I was exhausted and that I’m a lot better in writing than on the phone.  She had asked me if I made any lifestyle changes after being diagnosed with cancer.  I wanted to come up with something very profound and health-conscious-like such as only eating the seeds of Mexican turnip because you know, SELF magazine and all.  But I just said, “Not really - I was not unhealthy to begin with - this came out of nowhere,” and had the vision of me walking my dog in my pajamas the night before.  I’m not sure why they didn’t put me on the cover.  

When I got home, Stephen asked how it went and I told him that I had no idea what I said.  He then proceeded to tell me how he had told my story to someone on the phone that day and the guy asked if I was bed-ridden.  I got nervous about Ms. Kristin's mental image of me as she wrote my article so I panic emailed her a family picture, just to prove that I was upright, functional, and not overweight or whatever and that we all looked reasonably happy.  She complimented me on my beautiful people and asked if she could use the photo.  

There were a series of emails back and forth between Kristin and me and then another lady named Pat who had to “check the facts.”  In this series of emails I learned a lot about deadlines, and editors and fact checking, but mostly that anyone who hasn’t experienced cancer has no clue.  They did send me questions for clarification (see below) which I certainly clarified.  I was pretty sure by the fact that they kind of got some of the info mixed up and with the tight deadline, it may not be the most accurate.  I also learned that the online version would be written in my own voice so I saw this as an opportunity and I edited rewrote that one too.  Either way, the story would be shared and someone needed to read it.  I would have paid good money for a story like this five years when I couldn’t find one soul worse off than me that lived to tell about it.  

The online version came out on my birthday.  Some people would call that irony but I call it God’s timing.  There could not have been a better reminder of the gift of life.  Stephen was the first to find it, of course, and texted it to me.  I saw the word, “lethal” and I was scared to read it.  As I read it, I found myself crying for whoever that girl was, remembering that girl was me, thanking God that I was that girl, and then I went back to work.  The online article was almost exactly what I had sent them.  I was pretty pleased that they left the word “faith.”  Five letters can speak volumes.  Happy Birthday.  Stick a candle in that. 

The print version came out the next week with Jessica Alba wearing a swimsuit on the cover and it still makes me laugh.  Me. Her. Basically twins.  We watched as the article was shared over and over on Facebook by our friends, on MSN.com, and on Vanderbilt Cancer Center’s page.  It was tweeted and favorited and shared by all sorts of random people.  There were more kind words than I’ve ever been worthy of...all very cool, but a little weird.  And, the picture.  We could not have been more Southern if we tried - standing in a cotton field holding some dogs.  

I guess any fear I had in putting myself out there has pretty much diminished.  So much for flying under the radar.  I also realized that is when it’s your story and you’ve lived it, you are very protective of the details.  They matter.  I’ve written things over and over about my experiences but in the hands of a stranger, my control was released to their interpretation.  As I answered those questions, the details came flooding back, like the one about “setbacks.”  I thought about the day that I literally could not balance to put my daughter’s smocked dress on her for church.  Definitely a setback.  I thought about the moment that four somber-faced doctors walked in and I could read what they were thinking.  I thought about the day I told my crying son that I’d be back later that day, knowing I probably wouldn’t.  But, it’s a magazine article - nobody needs to read that. The bottom line is that somebody will pick that up in the grocery store or search for positive melanoma stories on the internet and my face will pop up - smiling and holding a dog.  They will need to hear what it says because it will give them hope.  It may only contain part of the story and we all know the whole, but the end result is good and for those that believe, there will be no doubt how God showed up. 

Next month there will be a new magazine with new articles and another gorgeous cover model.  My copy will probably go on a shelf to collect some dust, and I’ll save it to show my kids one day.  They know about it now but are seriously unimpressed which is just fine with me.  I certainly don’t consider being in SELF magazine my greatest accomplishment.  They are.  And they know it. 

KJ


Link to the SELF online article

*My clarification from SELF.  Note that they call questions "queries" which is probably in a Fancy Nancy book and that means they are important.  Also note that I was proud of my fancy colored ink but was supposed to use ALL CAPs.  I apologized for this because I was working on our fifth grade project at the same time I answered the queries.

QUERIES FROM SELF: ( If you could use CAPS, that helps distinguish your answers from the original query, thanks!)

1) Correct spelling? Kimberly Jessop  yes

2) You will be 37 as of October 1, 2015?  No, I turn 38 in September

3) Correct that in 2010 (which month was it?)  your husband pointed out a small cyst on your back? December 2010. Yes.

4) And you thought it was nothing, but still made an appointment with your dermatologist?  Well, sort of.  He made the appointment for me because he’s a worrier which I can also credit for my survival.  But, yes, I went that day, thinking it was just a cyst and hoping it was nothing. 

5) When the biopsy turned up stage 4 melanoma would it be fair to say you were dumbfounded? That’s fair.  Blindsided, dumbfounded, shocked, devastated...

6) After the Interleukin-2 treatment, you  started a two-year, PD-1 inhibitor immunotherapy infusion clinical trial? Yes, I failed IL2 and started the 2 year clinical trial.

7) You wold drive three hours to Vanderbilt then drive back, continuing to work and take care of our family? yes.  Friends and my husband helped with drop off and pickup and meals on the days I had treatments because I was usually gone about 18 hours. 

8) And your children were  2 and 5 years old at the time? yes (10 and 7 now!)  

9) You did the PD-1 immunotherapy for nine months; things seemed to be going well, but you had to wait until your first scan to be sure? I was on an 8 week cycle which meant that I was scanned for the first time after 8 weeks and every 8 weeks thereafter.  So for the first 2 months, I had no clue if it was working or not.  My first scans showed some shrinking so it was definitely positive.

10)  When your doctor called on your drive home and told you that your tumors were getting smaller, you screamed with joy? sure did.  Well, I waited until I hung up the phone, because you know, not to appear too crazy.  And, it’s a guarded kind of joy - everything is with cancer.  You are elated with any positive progress but guarded in how long the progress will last.  Always.  It is still this way. Four years and 8 months later.  Every time I walk out of a clear scan I know I’m not home free, just grateful that God gave me more days.  

11) Being away from your family for treatment makes you wonder if what you’re doing is worth it? Never. It was always hard to leave my kids even for a day, but I would go to the end of the earth and back if that gave me one more day with my husband and kids.  Have you seen them?  If those faces don’t give you a reason to live, I’m not sure what would.  


12) You did have a couple of setbacks, the worst being diagnosed with chronic myeloid leukemia?  No.  The pivotal moment was when the cancer had spread to my spine and paralyzed me.  I knew and we all knew that if I lived it would be a miracle.  I envisioned trying to care for my children in a wheelchair and knew that my career where I basically teach people to walk was pretty much over.  I don’t like to depend on others so this was devastating.  The neurosurgeon that did my surgery did not know the damage to my spinal cord that had been done and could not promise that I would walk normally again but it would buy me some time and relieve the pain.  I remember telling God that if I survived this, He could use me for whatever He wanted.  I woke up from surgery and felt my toes for the first time in a couple of months and I haven’t stopped since.  (Last week I ran a 5K and got 2nd in my age group.  It happened to be the 5K for the Melanoma Research Foundation that my husband and I brought to Memphis and hosted for the first time this year.  We raised 42K for melanoma research - not too shabby for a first year).  The CML was a complete sideshow.  Yes, it’s cancer.  Bad cancer.  I was diagnosed with that about 6 months after my spinal tumor.  I had spent 6 months trying to figure out how to walk again, so when they told me there was a drug for that, I figured the odds were a lot better than stage 4 melanoma.  If God had brought me this far, He wasn’t about to fail me now.  The biggest issue with getting another cancer while you are on a research drug is that you can no longer take the drug. So, I was basically left with no options to treat my melanoma tumors that were still there, but had no choice but to treat the CML.  It was a very wait and see approach which also required a lot of faith.  

13) As you explained to Kristin, at this point, you and your husband weren’t fazed by bad news — if cancer taught you anything, it’s that until everyone tells you there are no options, there are options? Oh we were fazed but the blow on the second cancer seems a lot softer, I guess.  (And the third is even less - I was diagnosed with squamous cell carcinoma last year on my nose.  Surgery took care of that one.) As a dear friend of mine says, you choose to “bow up or fold up” and I will always bow up.  We were certainly numb that day, and probably in shock because who in the world does that happen to? But again, I was given 3 drug choices that are FDA approved to treat the CML.  I hate poking, prodding.  Bone marrow biopsies are horrible.  Taking chemo pills for the rest of my life is not convenient, but cancer is not convenient.  And, yes.  I am not big on taking no for an answer.  We will always look for options.  The beautiful thing is that melanoma treatment has advanced so much that now there are actually options.  

 14) Since February of 2013, you’ve been in remission for both  melanoma and leukemia and I feel so lucky.  Ha!  Lucky is what happens when you win the lottery.  I won way more than that.  I won life.  I get to hold my children, watch them grow, pick them up from school, and tuck them in at night.  I get to spend my days helping others and doing what I love.  I get to celebrate anniversaries with my husband and hold his hand as I share this life with him.  I’m not lucky.  I’m honored.  I believe that it is all God’s plan and I believe in miracles.  I am not sure why He chose me for one, but I am grateful.



Friday, October 2, 2015

What thirty-eight looks like...


Thirty-eight does not fall in the milestone category like 30 and 40 and whatnot.  It’s a lost-in-the-middle kind of number - past 35 so you round up to 40, and shoot, well over 30.  We live life by fives and tens and the others just get lost in the middle.  But, thirty-eight for me is pretty significant - 20 years since I graduated high school, 15 years at my job, 10 years of motherhood, and 5 years since I first shook hands with cancer.  Plus, I’m never lacking for things to celebrate - I’ll just make stuff up. 

At thirty-eight, life seems to have brought me to a place where age and circumstance intertwine.  We all have something in common - our kids, our work, our past experiences.  We’ve moved past the intimidation of who’s older or younger and just see each other for who we are - or at least I do.  It’s really cool.    
Every year brings challenges, victories, defeat, and this year is no exception.  I find my prayer list longer and thicker with needs - illnesses that we thought only older people face, challenges that are reserved for “grown-ups” and then I realized I’m supposed to be a grown-up.  Somedays I long for that little two-bedroom house that we first put all the money we had in only because that’s before life got real big and messy.  But, then I realize that messy is sometimes beautiful and real and very much the glue that binds us all together.  Messy is rich with friendships and Friday night pizza, laughing and crying our way through life’s celebrations and heartaches.  

At thirty-eight, life has sure brought me to a place that was no where in my dreams, but part of it is better than what I could have dreamed.  So many times, my tendency is to say, “no, thank you” and go about my business, but thirty-eight has taught me “yes” because sometimes even though “yes” is not very comfortable, it’s the right thing.  So, this year, I decided to list 38 yeses - in no particular order:
  1. Yes to cake.  My mom used to make me a chocolate sheet cake with homemade icing every year on my birthday.  This year, my aunt walked through my door with the same cake, tied up with a purple fluffy bow - yes, just yes to that.
  2. Yes to spandex.  It helps with holding the things in that are poking out at thirty-eight.
  3. Yes to lunch.  With friends, with your kids - even if I have to totally rearrange my day and spend an hour in a noisy elementary school cafeteria, I never regret it.
  4. Yes to fear.  Facing it is harder than knowing you have it, but you will either determine that it was not as bad as you thought or much harder than you thought and both will be gratifying. 
  5. Yes to fairies, fairy gardens, fairy dust, and gnomes.  They are tiny and cute and I am fueling a limitless imagination. 
  6. Yes to meal sign-ups.  You can’t fix cancer, tragedy, or death, and you may not know what to say but everybody needs to eat.
  7. Yes to jewelry.  I can wear solid colors the rest of my life and no one will notice.
  8. Yes to an emergency stash.  Of chocolate, wine, coffee, wet-wipes, or whatever it takes to get through it.
  9. Yes to the puppy.  He will weasel his way into your bed, your heart, and bring endless joy for your kids, even if he poops on the rug.
  10. Yes to the kitchen table.  For homework, for family dinner, for art, for the piles of junk, and for all the dips that will start conversations that always end in side-splitting, cheek-holding laughter.
  11. Yes to music.  Two of the four people in this house find their groove in music.  One claims that “her brain just plays music like a radio.”  I’ve learned to embrace it and sometimes use my galley kitchen as a dance floor. Sometimes.
  12. Yes to the Big Green Egg.  It has saved me countless hours in the kitchen cooking meat and brought many people to my table.
  13. Yes to child meal planning.  Taco Tuesday and Waffle Wednesday will be a big hit and the guesswork is removed every week.
  14. Yes to humor.  Life’s not always funny, but it is.  And, you can find humor in the hardest places if you look for it.
  15. Yes to play.  The kind that’s free and unstructured. I spend my life teaching and encouraging play skills for children with different abilities and their families.  There is no greater joy than watching my own fling off their backpacks and run free in the backyard. 
  16. Yes to the littlest giver or gift.  For my birthday, I got sandbox cupcakes with stick candles made by toddler daycare friends, a birthday book made by my own little bitty artist, and a chocolate cupcake presented by a crying toddler because she really wanted to eat it.  All small but all big.
  17. Yes to interviews.  The story was lived to be told.  
  18. Yes to Tervis Tumblers.  They keep drinks cold and don’t leave those pesky rings that you see after it’s too late and the plastic cup is sitting in a puddle on your grandmother’s table.  
  19. Yes to sporting events.  I’ve never watched one play of any NFL, MLB, or college football game, even though all of my vacations have been centered around stadiums.  I love watching my son play and sitting by my husband.  My people watching skills have sharpened and even bad nachos are good.
  20. Yes to Bible verses.  I had no idea when I memorized them as a child how often my brain would recall them to bring me peace and help me look forward.  
  21. Yes to thank-you.  Sometimes that’s all that’s needed - not score-keeping, not returned favors, just simple acknowledgement of kindness and good.  
  22. Yes to survival data surveys.  Yes, I’m still alive.  Go ahead and extend the bar graph.
  23. Yes to service.  Sometimes you don’t have talent or money to give but serving others in whatever capacity is a gift for the people you serve, for yourself, and for your children who are taking notes.
  24. Yes to the consent form to use my extra blood for research.  It’s one more way I can help.
  25. Yes to your gut.  It usually steers you right.
  26. Yes to candles.  Especially trick candles.  I believe in making wishes and trick ones let you do this over and over.  Plus, the ten-year-old boy will really get a kick out of this.  My birthday cake came with three to celebrate past, present, and future.  What more do you really need? 
  27. Yes to reading glasses.  It beats squinting and who are we kidding?
  28. Yes to books.  It’s hard to find the time but good ones are such an escape.  Same goes for magazines.
  29. Yes to Sundays.  For worship, fellowship, and family, and to sit down for a few minutes without feeling guilty.
  30. Yes to stopping to smell the roses.  Or reading all the iris labels in the garden, touring the caboose, picking the blueberries, looking at the sunflowers, standing on the porch of Elvis’s birthplace - even though it wasn’t planned, you’ve got time and you’re teaching them something. 
  31. Yes to art.  Especially kid art.  It’s one of the freest forms of self-expression and allows us to interpret the world through someone else’s eyes.  Glitter is optional.
  32. Yes to coffee.  No explanation needed. 
  33. Yes to the experience.  There will be a story later and it will be fun to tell.
  34. Yes to Girl Scout cookies.  They are overpriced but delicious and some mom has to meet her quota of cookie money.
  35. Yes to keeping your mouth shut.  Sometimes this is the best option.  
  36. Yes to no.  Sometimes this is the best option.
  37. Yes to prayer.  This is always the best option.
  38. Yes to birthdays.  Celebrate them fully.  They are not just calendar days but gifts of life, growth, change, experience.  Parties are optional but cake is not.  

At thirty-eight, I live the most ordinary life in a suburban neighborhood dotted with SUVs where moms run taxi and dads cut grass.  I never would have thought what a miracle it would take to get to a place of ordinary and how happy I’d be with first world problems.  I ran across this quote that was written below some picture of a baby horse snuggled up to a teddy bear.  I can’t figure out what in the world this quote had to do with the horse and the bear, but it’s a pretty good summary of where I am and what thirty-eight looks like:  

"There comes a time in your life, when you walk away from all the drama and people who create it. You surround yourself with people who make you laugh. Forget the bad, and focus on the good. Love the people who treat you right, pray for the ones who don't. Life is too short to be anything but happy. Falling down is a part of life, getting back up is living."


Here’s to thirty-eight - the party's just getting started.


KJ