again.

So here goes....

I have cancer. Again.  

If I’m being honest, I’ve been at a loss for words on this.  

Words are powerful things.  They travel and tell stories and get returned back to you sometimes to hear with your own ears again, making you remember that those are actually words you said, or wrote - words that belong to you and make it real.  So for that reason and several more, I’ve sat on these words for a minute.  

A couple of months ago, what I hoped to be wrong about was indeed breast cancer.  

Since then there have been a lot of words - words to hear like “very concerning findings” and biopsy and pathology and such for me to process and fit into life.  They really don’t fit - it’s more like an invasive shove so I’m doing the best I can with this very rude interruption.  As stories go that are made of words it’s usually good to start at the beginning even if you’ve read it before because sometimes you forget the details,   Sometimes it good to remember where the story  has already been in order to think about where it’s going.  So here goes…

.......

I was standing in the middle of the pediatric critical care unit in 2006, treating patients when my mom called me at work, which she never did, and I heard the words “breast cancer” for the first time.  I was literally frozen.  Unable to function. The only thing I could think to do was to leave work and go pick up my baby from daycare and go home.  It was the most irrational move, waking him up from his nap and disrupting his day, and I most certainly looked like a lunatic.  What I did not know is that from that moment, every choice I would make would be centered around cancer and time.  

A year or so later we sold our house, moved to a bigger one, and had our girl who we named Martha, because time.  The two Marthas - both forces of nature - bonded over the next fourteen months and I was so hopeful that the older would infuse all of who she is into the younger.  It appears that worked out.  

In 2009, my most cherished and beloved mother went to be with Jesus, who she has most certainly spent the last fourteen years bossing around.  I was not ok with this and never have been but I carried on in my grief to parent toddlers - one free spirited and one strong willed but highly perceptive - without a mother to ask those random ONLY MOM KNOWS parenting questions to.   

The next year I heard some more words but this time they belonged to me.  Stage four melanoma - otherwise known as a lot of cancer.  I sat at my kitchen table building a lego set with a kindergartner and holding a baby with a pacifier while googling clinical trials to try to hold onto to my motherhood.

I decided then my kids would see me show up at whatever ceremony or event or sport no matter how insignificant it seemed.  Because time.  No matter what it takes for me to get there they will scan the room and their eyes will find mine and I will be sitting on the bleachers or standing at the fence smiling and waving.  I’ve never missed anything.  Ok, once Bailey got an honor roll certificate and I got the date wrong and went to work.  He never let me forget it.

We spent the better part of the next two years parenting toddlers and searching for cures.  I got treatments, signed on to experimental drugs, sometimes got better and a lot of times got worse.  I stared at images on screens and counted tumors, read data, went to t-ball games and dance recitals and class parties.  Tumors spread and paralyzed me and surgery sort of fixed that, but in 2012 another cancer - leukemia - threw the whole plan off track.  I told God I’d do whatever He asked if I lived.  

I started drug for the new cancer, got kicked off the clinical trial for the other.  There were no other options so we waited.  Stephen prayed in every chapel across town and put my name in all the prayer boxes.  Everyone that ever heard my name prayed for a miracle and what happened is exactly that.  It was a slow miracle as they are in human time, but by 2013 the cancer was gone.  All of it.  So we held our breath - zero guarantees - but no one really has any anyway.  There were scans and bloodwork and remission that blew experimental data out of the water.  My survival chances were literally in the negative numbers yet, I was sitting at coach pitch games, teaching babies to walk at work, handing out snacks to soccer kids, and marching my now five year old into kindergarten.  I pulled teeth, cleaned scraped knees, took first day pictures, and drove back and forth to get my body scanned that came back clean every time.  Clinically inexplicable.  

Four years later, I walked my scared and anxious boy into middle school in sixth grade only to walk him out less than six months later with a tumor in his leg.  Bone cancer.  He looked at me dead in the face and said he was born to fight this because after all, and I had seventeen tumors but he only had one.  I walked him into a cancer hospital, listened to all the words again, and explained all that would happen to him, because I could.  

He was twelve and she was eight.  No longer babies but smack-dab in the middle of critical forming years for self esteem and confidence - the very time when you figure out who you are and who is there for you.  I needed to be there for both of them.

I was with him almost 24/7.  I would leave his chemo to take her to running practice just to spend time with her in the car.  Stephen and I passed each other on the interstate or tagged out in a hospital room every day.  I started running so I could be near her.  I’d wave at her team practicing when I ran by or high five her on her way down the hills.  I spent three out of seven nights in a hospital by his side  and she and I spent Friday nights doing whatever she wanted which was usually just being as close to me as humanly possible for twelve hours or so.  By day I counted hemoglobin, gave IV meds, and sat in waiting rooms catching vomit.  In the afternoon I did third grade homework and walked the dog.  All night I pushed alarm buttons and hooked up meds to portable pumps.  For an entire year. 

Bailey went back to school full time in eighth grade and I taught him seventh grade at the kitchen table at night to try to catch him up.   He spent most of his high school years between leg surgeries, driving lessons, and planning his next adventure.  He missed out, he figured out how to work around what he couldn’t do, and he got up and figured out how to make something of the mess.  We watched it all unfold and it has been a painfully beautiful transformation for him into adulthood.  One that only God could have seen coming.  I have spent the last six years doing everything in my power to make sure that boy lives and has a future, and every other thing to make sure that girl knows I’m still here for her too.  She matters and I need her to know it.    

Last weekend, Bailey walked effortlessly to the front of a church wearing his cap and gown.  His eyes scanned the room, found mine, he gave me his signature half grin and wave back.  I took the picture and he kept walking.  His name was called and he grabbed that high school diploma that took more physical and mental stamina to achieve than any one person should have to muster and the whole thing was over in seconds.  I sat from my church seat with this very annoying port in my chest and watched it all go down.  

There was a time in life when I wanted to make it to walk her into kindergarten so I certainly had not planned what his high school graduation would look like in my mind.  I do know that I would not have imagined this.  I would not have planned to be propped up on medication to control side effects from chemo three days before.  Yet I was there and that is all that matters.  His eyes found mine and the culmination of details to get to that point really made no difference.  His memories won’t be mine.  I’ve learned that if nothing else.  And neither of us are looking back. 

The irony of all of it is not lost on me.  I just can’t make it make sense.  Mostly because it doesn’t. 

Those are the words of the story we have lived.  I have written them and spoken them and other people have spoken them around and about us as we have lived lived our lives parallel to everyone else we know for over a decade.  Only, our lives have been based on percentages and odds and data and medications and also lived fully and completely on hope.  There is more.

.......

For the last few weeks I have had graduation cap and gown, a binder full of chemotherapy instructions, and a cheap sequin top for an almost birthday girl to wear to a concert that was promised over six months ago.  I’ve driven thousands of miles back and forth to Nashville and spent hours in waiting rooms and had a fair amount of inspection in order to figure out what we we’re dealing with.  None of this was neither comfortable or convenient a most certainly did not fit into my spring agenda of focusing on college decisions and graduation and a fifteenth birthday and Taylor Swift.  I have rolled thoughts around in my mind like “who even lives like this” and mostly “I don’t want to do this again.” 

 

The first week or so I had a hard time finding God or even forming a prayer.  I watched as every single person in this house had their life disrupted, turned upside down.  It all crumbled like some sort of intricately built powdered sugar tower blown over by one single puff of wind.  The same panic, the same trauma that we all carry differently, all back to the surface.  Everything we had planned halted into chaos.  I was both the catalyst of the breakdown and the one holding it together.  It’s a tricky place to be.  

I walked around with 2 Timothy 1:7 on repeat in my head and praying “Please Lord make something of the mess.”  Both things I have done often when I am trying hard not to run from a situation.  

I know very little of the why or how of this but what I can tell you is that I am neither afraid nor alone.  Maybe I should be, or maybe I’ve lived through so much now that I’ve lost the ability to be surprised anymore.  But mostly because I trust God to handle it. 

I know He is working.  I have seen it.  Tiny pieces of this story started to unfold almost immediately through pathology reports that we thought would reveal something different - a road I’ve already walked and did not want to walk again, through strategically placed nurses and doctors and appointments and scheduling.  And people.  People who have been so intricately woven into our lives and they still show up with their time and their food and their prayers and their laughs and their love.  It’s remarkable.  I kind of can’t even comprehend it except for it’s the most tangible form of love. 

I know that He will make something of the mess.  I know that I fully trust the plan regardless of how much I don’t like it.  I am a lot mad.  I have a lot of questions.  I have had a lot of questions for a long time and most of them are unanswered still.   There’s not one you could ask that we haven’t already tried to answer.  

Here are the ones I have been asked most:

How are we? 

As a family we are ok.  I am not sure how any family really is supposed to be who has four different cancers in their house in ten years.  We do not get extra points for dealing with it or “handling it” as people say.  We get the same points as everyone else for getting through the day.  It is hard to stop and start again and again.  The logistics of the situation alone are exhausting - what can we still do, what do I need to let go of, and then the actual letting go of what took me so long to get back together.  We have learned not to dwell on the loss but what we can gain and not to get to stuck in the yuck because there’s plenty of it.  We are honest with our kids.  They know too much anyway and so it’s all laid out there.  They get to make choices and they get to be whatever emotion they are because that’s the only way I know to do this.  

They also get to go on with their plans because they deserve that.   I made a last minute college decision for Bailey over a text message with him.  We had wavered back and forth over money but sometimes you just need to shore some things up when there are a lot of balls in the air and go with what you feel is right.  I made a promise to Kate that I would take her to Taylor Swift and may have scheduled chemo around it.  I have zero regrets there.  

How are your kids? 

My kids are the most resilient and remarkable humans on the planet.  They have earned this status the hard way.  It is not the life I wanted for them.  I kind of wanted them to be able to take life for granted every once in a while, but yet they are incapable.  Instead, they have no time for nonsense, they know what matters, they speak truth and demand it from me.  They are also unbelievably loved by so many because they are easy to love.  They know hard things and are drawn to other people who also do.  Martha Kate said she was mad and that’s fair.  Bailey said chemo is like brushing your teeth - you kind of hate it but have to do it.  And he told me my port was lame.  

What do we need? 

We do not know what we need.  Fundamentally, I need not to have cancer.  I need for my son who has fought for his life to enjoy his life and go to college and he will.  I need my daughter who has watched all of this go down to keep her head up, keep moving forward, and not lose hope in it all.  She will.  Stephen needs to work and function.  He will. I need to work too, because that was the plan, because college.  And because I like it and it makes me happy to do something for other people.  It will work out.  My kids are older now - they are not babies or toddlers, but near grown adults which makes it easier and also not.  

What is the plan?

Chemotherapy first.  Twenty weeks of it (I’m three weeks in).  Then surgery.  Then radiation.  Then more surgery and maybe a little more surgery.  It’s a long game complicated by various factors but doable. I have three oncology teams - all in Nashville - and will add two surgeons to the mix and who knows who else before it’s all said and done. I am now off the chemo I have been on for ten years for leukemia because as my new oncologist says we are in a “no data zone” and don’t know how those will play together.  It’s a wait and see game there.  My hematologist and I have discussed it for a few years but I told him in February I did not have time for all that right now. It turns out I’ve got plenty of time. 

The plan is definitely not the trip to the Bahamas Stephen worked hard for and won and we were supposed to take.  I got some biopsies instead.  It is not new living room furniture or whatever house upgrade we kind of considered.  It is definitely not bangs as I was so inspired by Taylor to cut.  Probably best anyway.  It is not whatever frivolous thing that comes along because all of that can wait.  Pretty much anything can wait - ask me how I know.  

The plan for the year is cancer and college and even though that’s not what exactly I had in mind I’m thankful there is a plan.  This is the first time I’ve ever been given a protocol - all the others were kind of a shot in the dark.  I am thankful it’s my cancer and not his because that would kill me all over again.  I am thankful that we are us and we are in it together.  

I am mostly thankful that words are still being written because that means I am still very much living.  

Lipstick and earrings and here we go!  

Again.  

KJ