Reality and Love

You would think that four months into this, it would get easier.  More predictable.  Less uncertain.

Actually, cancer is never easy.  Totally unpredictable and extremely uncertain.

You already knew that.  But when you're knee deep, you forget and you keep waiting for a reprieve.

You know those moments when you're so tired or so done? Let's say you're on an amusement park ride and your stomach is starting to turn or your back is getting knocked around and you just want OFF.  You think it would get easier after the first drop, but no.  Every dip, every climb, every turn, every jolt and shake and stomach flutter becomes more and more intense.  Uncertain.  Unpredictable.  It leaves you uneasy.  It gets harder because you just want the wheels to come to a full and complete stop back at the station, so you can feel that lap-bar release and you can get OUT.

That's sort of how this feels for us.  We go to the "Clinic" 1-2 times a week.  Sometimes three.  Each time you go, you hope you will end up leaving with answers.  Clarity.  Sometimes you do, but not quite the kind you're hoping for.  Say, for instance, your cancer is gone - get back to your life.  Nope.  Instead, we get a bunch of numbers listed on a page on a printout to tell us how low or how high Anton's blood results are.  How sick or unwell he is likely to feel.  What appointments or procedures he will need next week.  And the next week.  And the next.  We have a long, winding road ahead of us.  We are not a 1/4 through this process.

I'm going to be transparent with this next bit because I need to say it.  Or write it.  Either way...

I sometimes look at Anton and think "I wonder if he'll be here for Christmas?"  Or Easter next year.  Or his birthday.  Or the kids' next birthdays.  Our Anniversary.  I think about simple and normal every day things and then I follow up with "I wonder if I'll need to do that alone".  Like...cleaning out the garage.  Stupid.  I know.  Who cares about the garage?  I don't.  But it's one of those every day things you think about.  Sometimes when we are watching TV together at night, I wonder...how long will he be here, by my side, making me laugh at this stupid stuff we watch?  We took Quint to a professional soccer game recently.  I wondered as I took this picture "is this the last time we get to do this?"

I know everything in you right now wants to say "Stop!  It's not the last time.  He will make it.  He will be fine."  I get that need to right the ship.  To auto-correct what you perceive as giving up, being negative or pessimistic.  I really do.  I've done it.  For others.  But when you live with cancer...and it's in your house...in your life...in the body of someone you love and trying to take them down; you see things differently.  Trust me.  Anton and I have had these conversations regularly.  They become a part of your dialogue when you're staring down crappy statistics and signing Advanced Directives.

We are foodies.  It's a huge part of our bond and always has been.  Anton has lost his sense of taste from the chemo.  It's devastating.  He's my chef.  He's amazing and well-known for his culinary skill set.  But he neither has the ability to taste nor the energy to prepare and cook meals.  

Anton is my front-runner.  Outgoing, extroverted, gregarious and a people person.  We balance each other because I am actually none of those things.  When we go out and about, he runs interference for me.  He's the front-man and I'm the wing-girl.  It's a nice setup.  Now I find myself running front and center without my larger than life best friend to navigate.  Cancer has robbed him of his immunity and his energy to be out in public.  

Theatre is and has been our life for years and years.  Anton pours himself into his work and his students and we chug along through production after production.  Enjoying and yes, sometimes grumbling through the grueling schedules but delightful results.  As you might already know, Anton has had to take an extended leave of absence from his passion - teaching.  It kills him.  It brings him down lower than I have ever seen him.  A big part of our life is missing and it's extremely difficult to know that "the show must go on".  Even when we can't be a part of it...

Now we face transplant.  Our only hope for Anton's survival per the medical world.  But there are so many potential complications.  The chances for remission/survival are around 60%.  Anton asked me if I wanted to take $20K and go to Vegas and put it on one color at the Roulette wheel.  Of course I said "no!"  He replied, well baby...those are basically my odds of surviving this."

I cried.  So did he.

The longevity of this race.  The overwhelming financial burden.  The grim diagnosis, treatment, and recovery options.  The exhaustion and total life interruption.  The vague timeline of getting our life back.  The potential complications.  The unending "what if" that takes up residence in your mind.  The sadness.  The depression.  The medical terminology and paperwork.  The IV's, PICC lines, medical supplies, blood draws, clinic visits, and transfusions.  All of these things and more have become our life.

We have both said "I wouldn't wish this on anyone."

And yet.  Here we are.  Living it all.  Every day.  Still in shock.  Still numb.  Still wading through the process with questions and uncertainty and confusion.  Still in disbelief that my best friend, my chef..my front runner, TV partner, co-parent, love and overall hand-holder...is fighting for his life.  

It's mind altering.  Painful and overwhelming.

And yes, for as long as is physically possible or until God calls Anton home (and trust me, I'm crying out that it is many, many, many years away) - we will keep fighting this awful disease side by side and we will continue showing up to treatments and clinic and chemo and transplant and whatever else it requires.  

At the end of the day, the house doesn't matter.  The cars don't matter.  The bills don't matter.  

What matters is relationship.  Notice I didn't say "survival" or "beating cancer".  There is nothing Anton can do to work any harder at "kicking cancer's butt" than he already is.  He is doing everything.  And in this way and for so many others, we don't get to decide if that will be enough.  It's not up to us.  Only God knows Anton's final breath, and don't think that's easy for me to type.  Because I sit here crying like a baby.  Except that it's true.  No one is promised tomorrow.  Not me, not you, and not Anton.  Cancer will not decide.  God has already ordained Anton's life.  And He has already ordained yours and mine.

But what is up to us are the relationships we forge and tend and build.  With each other, our children, our families, our friends, and those who rally around us.  That's what matters.  Because we don't get to choose the rest. We do get to choose today to love each other better, practice patience and kindness, let things go, forgive, rejoice, enjoy each other, laugh, cry, build memories and recall old ones, hug, kiss, and stare at each other across the room, take pictures and silly selfies, and cherish what we have today.  We get to do that and so we do.  We choose to love.  

For today and all the tomorrows that we get.

Every one.

Living in the Grey

There is nothing we cannot live down, and rise above, and overcome. - Ella Wheeler Wilcox

I don't live in black and white.  I live in grey.  I can't help myself.  I've always been this way.  I have one foot firmly planted into "what if" and "maybe" but the other foot deep into reality.  I'm not rainbows and unicorns.  I'm not an optimist.  I'm a funeral director's daughter.  This is actually true. 

When the Oncologist put her hand over Anton's and said in a somber, quiet voice "I'm so sorry...I'm going to be praying for you" - you really hate that "firmly planted in reality" foot.  Dang that foot.  General oncologists see it all.  All the cancers.  Even she knew, this wasn't good.  This was a difficult road ahead and make no mistake, she felt bad for us.  If that doesn't catapult you into reality, I don't know what will. 

 
I've gone back to those first diagnosis moments many times in my mind.  The shock, the grief, the despair.  I long to re-write the outcome.  Many times over they had walked into his room and said they believed he had some sort of auto-immune disease, but they weren't sure which one.  At one point they had even ruled out Acute Leukemia.  Now you know why I said in my last post that we were so confused that first week. 

Those sores in his mouth?  They weren't canker sores.  They weren't stress.  They were cancer.  In plain sight and yet no one knew.  They were the actual aggressive Leukemia growing in his mouth.  When I think back on those three months that he had those sores, I cringe in my heart.  Every rinse and gargle and sleepless night he spent, in agony.  In pain.  In exhaustion.  Every meal he tried to eat, and winced in pain as the food hit those sores. 

When I think back over the summer.  How tired he was.  How relentlessly exhausted he was when we took our kids to DisneyWorld.  How he threw himself into his new job with as much strength and will-power and excitement as I've ever seen in him - and yet.  He was pale.  Fatigued.  Running on sheer adrenaline during his first show and the hundreds of hours he put into it.  By Thanksgiving when he told me he was simply too tired to host our annual "Thanksgiving", I should have known.  Why didn't I know?  

Christmas morning, we had so much fun giving each other gifts - something we don't usually do.  He spoiled me rotten.  I cried and hugged him.  And I didn't see it.  I didn't see how truly sick he really was.  How fragile he was in those days.  In reality, and I mean this, how close to death he was.

And then fast-forward just 13 short days.  We had a solid diagnosis.  We had a treatment plan, though we really didn't understand all of it in those moments.  We sat at Medical City Dallas, in that blue and white hospital room, staring at each other in disbelief.  Was this real?  Were we really here?  Was this our new reality?  The grey.  The black and the white.  All the in-between.  Feet  scrambling to find solid ground.  

We cried buckets, friends.  We despaired heavily.  We existed moment to moment.  Chemotherapy began and we met nurse after nurse.  (Was this real?  Were we really here?) Anton had two IV trees at one point.  So many bags going every which way that even his nurses were overwhelmed.  

A storm with tornado warnings blew into Dallas one night and hospital alarms began sounding off instructing staff to help patients take immediate cover.  This meant that Anton, chemo bags hanging, red devil pumping into him, and as sick as I have ever seen him in almost twenty years, had to be moved from his dark, quiet room into the loud bright hallway.  How can he handle that right now, I wondered?  I don't care if there's a tornado.  It'll pass.  We all know it will.  Leave him alone!  I wanted to shout that, but instead I sat quietly in the corner on the cold vinyl couch in his room.  I watched out the large window as the storm approached and then raged.  

Pouring rain and wind slammed against the pane and I thought "That's how I feel.  I feel like our life has become a horrific storm and the warnings are sounding and yet, I can't figure out where to take cover."  Just as they had begun to move Anton's bed out of the room, the code changed back to an alert and he didn't have to be moved after all.  They wheeled him back, plugged everything back in.  After everyone had cleared out and it was just the hum of the machines, I sobbed silently in the corner - knees to my chest, head down.  How do we get off this boat?  How do we escape this storm?  How can this be happening to our life?

Even today, I find myself asking some of those questions.  There are moments I burst into tears. There are moments we simultaneously burst into tears together.  Random simple things will set us off and we cry.  Sometimes we cry and then laugh.  But I'm here to say - Dad and Mom raised me with a solid foundation.  And even as I ask these desperate questions in my darkest moments, I know the answer already!  I KNOW the answer.  I know Him.  We could NOT do this without faith.  I could not get out of bed in the morning without Jesus tugging at my feet - both the grey and the one drowning in the reality of our life circumstance.  He's there reminding me where I go when the storm is raging all around.  I go to the Rock.  

Both of these feet.  Dragging myself to the cross and to God's truth, day after day.  I need you to know that we choose to believe God has GOT this.  And it's not easy.  That means whether the outcome is what we hope for or even if it's not.  It's the hardest thing we've ever done so far.  But friends, we do not grieve as those with no hope!

We are just regular people over here living through an earthbound nightmare.  But GOD! 

We are confused, scared, angry, frustrated, grieving...  But GOD!

I'm so relieved that God can handle all of my anger.  He can take it.    

There is comfort.  There is peace.  There is a sacredness in the broken pieces of this horrible disease.  And it surprises me, because I'm a bit of a Doubting Thomas.  Blame the grey foot.  I can't help it!  My faith is like a sand-castle in high tide some days. 

I don't know what will happen to AB.  We don't know what story God is telling through Anton or our family.  What we do know is that we need to get out of the way and let Him tell it.

On that note, I'll leave you with an old song by Dottie Rambo (old school gospel) that keeps ringing through my mind as I type all of this up.  I know we don't all share the same belief system.  I get that.  But it is such a privilege to share my heart with you.  Thanks for letting me...

Where do I hide till the storms have all passed over?
Who do I run to when the winds of sorrow threaten?
Is there a refuge in the time of tribulation?
When my soul needs consolation, I go to the Rock

 I go to The Rock for my salvation
I go to the stone that the builders rejected
I run to the mountain and the mountain stands by me
When the earth all around me is sinking sand
On Christ, the Solid Rock, I stand
When I need a shelter, when I need a friend, I go to the Rock

Walking through Fire

It was October 2016.  Anton had started a brand new teaching job at the high school level and was working on an incredible steampunk version of Romeo & Juliet.  He started getting canker sores.  That's what we thought, anyway.  Several of them, around the inside of his gums and lips.  They would heal and then return in new places.  He saw a dentist and eventually a periodontist.  It was likely stress, they told him.  From the new job.  He took several rounds of antibiotics.  He tried over the counter rinses and pain numbers.  The show came and went and was wildly successful.  But he was tired.  Run down.  By December we thought he had a mild case of the flu.  He developed a really sore throat.  I had just recovered from two weeks of flu-like symptoms.  He had what I had, I announced.  You need to sleep, I told him.  

"I can't sleep though...I'm in too much pain.  I feel terrible" he lamented to me.

On Saturday, January 7th, he coached our daughter's volleyball game.  He coached our son's basketball game.  He went to school for a rehearsal and set-building day, but came home early.

I should stop right there.  I need to tell you that Anton doesn't leave any rehearsal early.  He doesn't quit.  He is a work horse with a high pain tolerance and a "get it done" mentality.  I wish I could say I sensed something, but when he came in the door that day looking pale and cold-sweating and when he sat down on our couch with a heavy slow motion, I should have known inherently that something was really wrong.  But I didn't.  And instead, I have to tell you that I nonchalantly blew the whole thing off a bit.  He has the flu.  That has to be it.  (I said to myself).  

He looked at me with weak eyes and said "I can't swallow."  What does that mean?  You can't swallow?  "My throat is so sore...I can't swallow my own saliva".  Here is where I want to tell you that I jumped up and took action.  Only I didn't.  I stayed right there, in my recliner.  I suggested he had the flu.  He asked me to take him to the ER.  

Wives?  Have you been there?  When your husband has a cold and thinks he is positively dying?  I was there.  He has a sore throat and he wants to go to the ER?  I can at least tell you that I held back those words.  I didn't say them, I only thought them.  

When they started blood work and a CT scan, I was seeing dollar signs.  I thought "all of this for a sore throat?"  Hours passed.  I left with Keira for a sandwich.  We called Anton and asked if he wanted anything.  He did, but they wouldn't let him eat.  We returned and football was playing on the hospital t.v.

We passed a young man being wheeled out of the ER with his wife and parents.  "Finally, getting admitted and a real room - that'll be better" they said as we walked by.  Sad, I thought.  Being admitted stinks.  

I returned to Anton's side and the door opened behind me.  The doctor suggested that the testing he needed would have to take place at a different hospital, and I immediately assumed we would make an outpatient follow-up appointment.  I started looking for paper to write down who we should call.  No, she replied - they would be transferring him via ambulance.  Non-negotiable.  Her face was somber as she stared at both of us.  The kids, oblivious to this, played quietly.

Friends, that was my moment.  Right there in ER room 8.  

I froze up inside.  I distanced myself from what was happening.  I moved away from it.  I knew somewhere deep inside that all was not well.  This was not a sore throat.  I wouldn't allow myself any further than that.  I stopped myself and steeled up.  

The kids went to a friend's to sleep over.  I moved in slow motion and I moved rapidly.  I met Anton at the second hospital.  He arrived on a stretcher, chatting up the EMT's.  "My wife!" he said, cheerily, when he saw me.  That's his typical greeting.  My wife!  He shouts it across rooms.  He whispers it in church.  He says is as he's falling asleep.  

The next two days were a blur of tests and boredom.  Anton felt lousy, but they gave him pain medication to help with the swallowing.  We watched HGTV and tried to nap in between IV beeps and visitors and more tests.  

Monday, January 9th, Anton's hospital doctor walked in our room.  Her face serious.  Her tone quiet.  She touched Anton's arm.  She looked at us and then at Keira who was in the corner.  She said "I have news.  It's not good.  Do you want her here for this?".

Here's how that sentence falls on you physically: I sat up straight.  Without meaning to.  I just bolted up.  My eyes darted over to Keira.  Then to Anton.  My heart started beating rapidly.  Like I was running, only I was sitting as still as I ever had.  My adrenaline forced the blood straight up into my neck and face like a rocket.  I felt like lava.  Heavy.  Solid.  On fire. Burning up. My heart melting.

"Please, can you just word it in a way that won't cause panic?..."  I heard myself say that as I glanced over at Keira.  I didn't mean it though.  What I meant was "No.  Walk out of here.  Take your words and walk them right on out of here.  Whatever you're about to say that's going to upset our entire world...I need you to keep it.  Don't say it.  Please, don't say it."

She looked at Anton with compassion.  "You have leukemia."  And her words hung in the air like smoke.  Wafting around and getting in your eyes and your heart and your lungs.  And I wanted to cough and cry and throw up and fall apart.  Instead I just sat there.  Frozen.  Anton looked at me and we locked eyes.  And it felt like forever that we sat like that, but it was only a few seconds.   

She said other things.  Biopsy.  We're not sure what type.  Few days.  Chemo outpatient. All we can do here.  I heard her, but I didn't.  I looked out the window and she walked out eventually, taking all of what we used to be with her.  

I climbed into the hospital bed with Anton and we collapsed into tears.  Keira came over and crawled up with us, and we spoke gentle truth to her.  Daddy has cancer.  We're going to get help.  God is gonna take care of us.  She was so brave.  No tears.  Only strength and innocence.

Two days later we learned that Anton had Acute Myeloid Leukemia with a rare presentation in the mouth.  We also found out that it was aggressive and had to be treated immediately with chemo.  In those first couple of days we received so many mixed ideas about treatment and prognosis that we felt constantly confused.  It seemed the plan changed daily.  We finally learned that Anton was to receive inpatient chemotherapy at Medical City Dallas by one of the top doctors in the state.  This was both a comfort and a blow.  What little we knew about chemo seemed to be done on an outpatient basis.  What you see in the movies.  A small clinic, a chair, a patient hooked up for a few hours.  

Instead, he went by ambulance to our third hospital.  We arrived within minutes of each other again and he said those words I expected as he rounded the corner to his new room on yet another ambulance stretcher; "my wife is here!"  

Within two hours, we were speed educated on what was coming.  30-45 days in the hospital for the first round of induction chemo.  1-3 weeks home.  Then 4-6 rounds of chemo after that at 5-7 days inpatient each time.  21 days off in between to heal.  This type of presentation requires Stem Cell Transplant, almost always.  We digested what we could and cried through the rest.  We held hands tightly.  We stared in disbelief.  We were numb and exhausted.  We were aching for our children who could not grasp the seriousness of cancer, let alone a blood cancer. 

I wish I could tell you that I was a rock.  That my faith was sure and solid.  That I was strong.  But friends, I was messy.  I was a sponge.  My faith was shaky and scary.  I was weak.  I was angry.  I was frustrated and consumed with pain.  I was afraid to my deepest core.  

I told Anton "this isn't the deal we have" and I wept in his arms.  I reminded him that we are growing old together.  We are traveling to Japan some day.  We have kids to raise and stuff to do.  I climbed into that hospital bed repeatedly and we sobbed together, asking God why and trying so desperately to understand how He had allowed this for our life.  

I have never walked through fire like this.  I have never watched someone I love this much be so sick.  I have never understood the agony of having the father of your children ravaged by a vicious disease or of having to come to terms with the notion that he might not survive this.

Until now.

But I want you to know, there is unbelievable HOPE and COMFORT in the eye of this awful storm.  Our valley is deep, but God!  Our path is dark and stormy, but God sends His people to rally around us.  The love and care we have received is vast and wide and covers our darkest hours.

And here's where I'll stop for now, but there is much more to tell.  So much more...