Lemon Drops

This post is inspired by other cancer moms, friends, family . . . people who have said to me, "I just don't know how you do it."  People who have said it like I have some secret handbook to life.  People who talk of me like I am somehow stronger than they are, like I am doing something they couldn't.  I want them to know, there is no secret.  I am just as human and flawed as they are, that we all struggle.  We are all at different vantage points along our journey.



I don't have a picture, but I can remember so much about that moment. 

The moment right as our plane took off from Los Angeles last summer, July 2009.  A few weeks earlier Josh had gotten his port out, we had all the time in the world to go on that much deserved beach vacation.  Until we didn't.  His port was removed June 9th, the afternoon of June 22nd Josh was upstairs sleeping off his CT sedation when they called to say he had already relapsed, only 3 months out from the last time we flooded his body with chemo.  In the 6 weeks from when that chemo would have seeped out of his body, one of the tumors in his lung had regrown to its original size. 

We had only one request.  Can we please go on vacation first, we promised Penny.  Our therapist and our primary oncologist advocated for us, three days later we got word they would delay, but only one week.  We were on a plane to stay with former co-workers living in sunny, beachy orange county 3 days after that.  We stayed for almost a week, my kids broke things and taught them about the child-proofing to come, we drank fresh microbrews, and ate awesome thai food.  There were beaches and sand and horses.  Josh appeared perfectly healthy.  Except he wasn't.  We came home late on a sunday, he was in surgery tuesday morning.  Cancer doesn't wait while you pull yourself together.

I remember that flight.  Some passengers had traded us seats so our two little pairs making our family of four could sit only a row apart instead of the whole plane.  I buckled in.  The woman across the aisle asked if she could put her carry-on under the seat next to me that was empty.  I happily agreed and took the bag from her and began squeezing and shoving it roughly under the seat.  She winced.  It was not working, and then I used two hands.  Grasping it from both sides I recognized the item, the bag contained an urn, wrapped in a blanket. 

I pushed more gentle, bent over in a knot, but I slowly secured it.  A quiet tear fell from her face and I smiled as reassuringly as I could, and turned away so she could weep quietly.  The plane taxied.  In my head a ukulele played, the lyrics of  "Somewhere Over the Rainbow" did their best to assemble.  I can't even remember if I was seated next to Penny or Josh, I think it was Penny.  But I remember the way the light streamed in the windows on our side of the plane.  I remember the hot sensation of my own tears starting to stream.

I wanted to be anywhere but on that plane.  Every protective mothering instinct told me to run.  Instead we boarded.  Delivering my son back to surgery, radiation, and more, harsher chemo.  Delivering my daughter to more fear and more uncertainty, more having to be the super sib.  Delivering my husband back to a life where we managed, we scheduled, and lived lives in parallel keeping it all afloat.  I struggled to sing the lyrics.  To remind myself there would be a somewhere, a place where this would end.  Relapsing is cruel.  Relapsing immediately. . .at that moment was too much to bear.  I just wanted this plane to get diverted to anywhere but our city.

And then the woman diagonally infront of me next to the window began to sob, softly.  I could see her shoulders heaving.  And briefly I thought "I'm sorry I didn't realize I moved to the crying section of the plane."  I remember the external sound of my own laughter snapping me back to reality.  Plane trips like movie scenes are supposed to be happy, full of excitement and waves and kisses goodbye, happy memories and anticipated adventures.  Except when they aren't. 

So I reached in my carry on and pulled out the travel pack of tissues.  I triaged.  How many tissues did each of the three of us need?  I decided I could get by with one.  I was a mom traveling with young children, if need be I could use my sleeve and blame it on the kids.  The lady with the tired eyes desperately needing to not cry anymore but failing, she got 3.  The rest of the pack I'd give to the lady infront of me.  I wiped my tears.  Gave myself a peptalk to pull myself together and took a very large, slow breath. 

I reached across the aisle and took her hand, sliding the tissues into her palm.  She looked up at me from her concentrated gaze at her hands, the gaze where she had been fighting with the stinging tears to stop.  Her face was anguish.  She wanted support, she wanted help, but she wanted to crawl in a hole away from people, away from the pain, away from the lady across the aisle whom she was ashamed to be crying in front of.  I knew there was nothing I could say to make it better and she didn't need to talk, so I simply said, "One breath at a time."

She nodded, and I turned away before she had to say something.  She didn't need to.  I didn't want to have to tell her why I was sad.  I couldn't bear her pain anymore than she could bear mine.  I took another breath.  The lady in the row ahead was getting worse.  The man next to her was awkwardly trying to talk to her.  Big breath.  I shoved my hand between the seats.  I rested my hand silently on her shoulder.  She put her hand over it, she cried harder.  I struggled to find something to say.  "Not every flight is a happy one, it's ok."  One thing I have learned, sometimes you need to give yourself permission to just marinate in the suckitude of your situation.  She sobbed and shook her head up and down in agreement.  I pushed the package of tissues through to her hand.  She squeezed my hand again and then took them.  She calmed and then the sweet man next to her told her a joke.  She snorted.  We all giggled.

I went back to ukuleles and troubles that could melt like lemon drops.   The tears crept up and spilled slowly.  I didn't want to be on this plane.  But neither did ashes lady, or the lady who just said goodbye to relatives she was afraid she'd never see again.  We all have to do it though.  We have to get on the plane, even when it is not a happy flight.  I tried to find gratitude that Josh still had a chance, that we had excellent medical care.  But I couldn't do it that moment, I just wanted to be somewhere with real ukuleles, warm salty breezes, endless sand, drinks with umbrellas, and carefree days that had the promise to last forever.

We put our shoulder to the grindstone and slogged through one of the toughest and painfully beautiful years of my life.  

I didn't hear that song in any form, didn't even think of it, until 13 months later.  I was seated in a church next to my husband.  I was wearing the paisley dress we bought in amsterdam, the one Penny loves, the one with handsewn accent beads that fall off everytime I wear it.  The church was filled with pastel pink and purple balloons.  Balloons tied to little stuffed animals.

I had just taken my seat.  I had just returned from a volunteer mission.  I had stepped forward, and volunteered to go tell a mother it was time to close the casket on her daughter's coffin.  That it was time for her to look on her daughter's body, devastated by the same cancer my son has, a cancer that was diagnosed at the most favorable stage, and then had relapsed over and over.  It had ravaged her, until, finally she couldn't fight it anymore, till she asked to go to the hospital for hospice, where she died, slowly.  I couldn't even look at her.  I didn't want to remember her like that.  I had focused on her mom, I had refused to look at her body.  I don't even know what color clothes she had on, if it was a dress or a shirt. 

I had just used my phone to email the other editors of this blog, asking them to promise me that I would never do this again with their daughters at the back of a church in a little white coffin.  I had choked on the burning in my throat, the reality that they could hope, but not promise.  I had gone to find our friend.  To give her one last hug before the service, one from all three of us, her pack.  She wasn't at the back of the church and the funeral directors and some family were discussing that someone needed to go tell her it was time.  It is a tight knit little town.  They all were aching.  I volunteered.  I found her.  I said it in way I think only another cancer mom could say.  I gave her the longest hug I could muster, and I walked away so she could gather herself.

I sat next to my husband.  I bit my cheek, the way I do when I really don't want to cry.  Parents took a seat for their own child's funeral, as helium balloons swayed and bobbed against each other.  And then that little ukulele began strumming.  I stopped biting my cheek.  We both cried.  My husband and I.

I didn't want to be here either.

I didn't want to bury this little girl.  I didn't want to make peace with the idea of it.  I didn't want to swallow the truth that it could be us, that we didn't have a golden ticket that would absolutely spare us.  That the harsh reality was, that if it wasn't our boy, it would be another child.

I sang that song in my head as my husband and I stood watch over her little casket.  We stayed, alone, under a tree.  We stayed and did what we knew her family could not, we threw the first handfuls of dirt, we stood guard over her body till there was nothing more that could be done.  We tossed pink and purple petals over the dry dirt, because I knew she wouldn't like it all ugly and brown.  In my mind I sang about being high above chimney tops, I wanted this journey to just stop hurting so much. 

I wanted to be somewhere over a rainbow.  I didn't want to be doing this.  It was a hard day, but I got in the car and drove there. There is no magic secret in these aching hours.  Life means doing all of it, even the trips that aren't happy.  Life means looking at a child or a friend, and telling yourself that loving them means you go where you don't want to go, because being beside them through hell is what will make you walk through it at all.

A few weeks later we were still raw, and we were back in CT again.  Portless again.  The line had ruptured and been removed before the scan,.  We waited.  We got the news, Josh, for the first time off of chemo was NED, no evidence of disease.  We didn't celebrate, the only true tangible feeling was relief. There is an ocean of difference between ecstatic and grateful.  I had just been back to that little girl's grave the night before to celebrate the birthday she missed.  It seemed insincere to make a fuss like we had annihilated something that could be absolutely vanquished.  Her grave is a reality.  We had gotten a pardon, a reprieve.  We get to think about the 62% of his survival rate for 3 months instead of the 38% chance he won't make it.  We were, we are, thankful for this time, as long as it lasts.

Weeks later we began to plan our "real" beach vacation.  Penny wanted to go to Hawaii, she wanted to hula.  I tried desperately to sing that song to her.  I ended up having to get it off iTunes instead.  We listened to it before school one morning, and I would swear I heard her mumbling it now and then.  A few more long weeks of stress passed, as they do, crawling and sprinting all at once.  It was time to go to a birthday party.  Life and all of the joyful milestones don't wait for you to pull yourself together either.

It was the 3rd birthday of a boy I homecared until Josh was diagnosed.  We missed his 1st birthday party, it was 5 weeks after Josh's diagnosis and nephrectomy.  My husband and daughter went.  His second birthday, Josh was too ill from the relapse course of chemotherapy.  Penny was struggling.  My husband went by himself.  This year, he was three.  We were all going together.  And one of the attending oncologists would be there, their family took gymborree classes with the birthday boy.  It was twistedly ironic.  Our first of his birthday parties, we'd spend it with the man who saved Josh's intestines from a blockage surgery wouldn't believe existed, the man who trusted my weird feelings.  The man who only weeks ago had re-written an order for an ultrasound to a CT, solely because I lost it on the phone with the nurse and melted into tears. 

This past saturday was warm and gorgeous in my town.  My husband burned a cd for the kids, I'm not sure why.  We piled in the hybrid commuting mobile, and put the windows down.  The cd slid into the player.  The ukulele plucked those first few notes.  Penny squealed.

I looked in the passenger side mirror.  I could see myself, and somehow I looked happy.  Somehow I looked rested.  Somehow, I saw myself for the first time in a long time, and I thought I looked pretty.  I laughed, I was wearing a red shirt, much to Josh's approval.  Over my shoulder I could see my daughter, melting in happiness.  Singing along, loudly enunciating "Lemon Drops" despite the fact that she has no idea what they are, flying her hand out the window like mine.  Making "hummingbird shadows" as she likes to call them.  We took the long way, the way that goes through both round-a-bouts.  The ukulele played on repeat. 

The breeze was as soothing as any ocean breeze.  My family was all together, in our little car.  I reached out the window and chomped my daughter's hand.  She giggled ecstatically.  The sun warmed my skin.  The noise of the other cars was barely audible. 

I cried, slightly.  Softly.

I had made it.  Somewhere after treatment.

It wasn't the somewhere I wanted.  I am here, where people from there criticize a mom for even thinking of photographing their child, for documenting a life that may end too quickly.  The here people happily stop thinking about after one month of awkward acknowledgments and discomfort.  The here where you just have to move through the pain, and the fears.  The here that shows you how tough you are, because it doesn't give you a choice.  The here where you don't have cancer, your child does, you are the mom, and you have to make unspeakable choices.  The here where no matter the outcome, no matter the length of your journey, you come out changed.


The here where a ten minute car ride can cement itself to your soul and define who you are becoming as deeply as a funeral for a child you love like your own.  

My troubles don't melt like lemon drops.  Some days, are still really hard.  I grapple with the fears about whether Josh will ever be able to live without his current limitations, will the long term side effects be treatable, will he relapse, will we fill a church with red and blue balloons?  I mourn 2 little friends I touched and laughed with, I break for their mommas.  I ache for little ones I only know from pictures, little ones already lost, and their brave families.  I try to be on time for kindergarten drop-off.  To remember appointments.  To not triple schedule for the same time slot again.  To clean and fold laundry.  To snuggle and discipline.  To not yell.  To breath.  To take pictures.  To return work to my clients as timely as I can muster.  To sustain productivity for more than 3 days.  To return emails.  To recognize my best is all I have right now.  To cut myself some slack.  To let myself do nothing despite a to-do list a mile long. To wake up smiling.  To steal another kiss.  To ruffle a head full of hair.  To lose my patience and find it.  To brush little teeth and clip little nails.  To visit specialists.  To allow myself to mourn my own losses.  To dance to the "GoodMorning" ringtone/alarm my new phone makes in the darkness before the sun rises. To find the gentleness of now.

It's been 16 months since that plane ride.  I just wanted to get here.  To NED.  But it isn't where I thought I'd find it.  I didn't think I could be this tired, that 2 years could catch up with my so intensely.  I didn't think I'd have to teach myself to find beauty again, to remember what's important.  It's certainly not the deadlines, and the "getting back to normal" everyone so desperately wants me to do so they don't have to think about cancer anymore. 

I refuse to get back to that normal, I just can't get back to there.  I refuse to run around the wheel and live for deadlines and meetings and filling schedules with activities.  I can't repair the cracks in me with one clean scan.  I can't just walk away from here.  I've slowly come to terms with the simple truth that even if I could, I don't want to. 

Here there is gratitude that surpasses normal, that is deeper and stronger than feeling lucky.  Here there are friendships forged in the hottest of fires, and of the strongest of metals.  Souls that understand and accept cruelties others can't bear to imagine, ones that know without having to ask. People that step forward from normal and jump in with me despite never having gotten diagnosed into the club.  I have a built in friendship meter now, the people that can talk about the cancer, and the people that can't. 

I don't have the magic answer.  I still ache in the center of my chest thinking of that plane ride.  Write names on balloons and release them instead of keeping them till they droop to the ground.  I still fly my hand out of the car window and sing to a ukulele as my daughter drifts afloat the purest of happiness. 

It doesn't have to be pediatric cancer that puts you on a hard road.  There are things out there just as bad, and as we like to say, "paper cuts still really hurt."  If you are broken, if you have those fears that immobilize you, here is what you need to hear from my journey.  Listen to the lady across the aisle, "One breath at a time."  Roll loose change, use a whole container of clorox wipes to clean one bathroom, knit, take a walk, sit still.  Pick one thing you can manage, and do it.  That's all you have to do, it's all you can do, just do that one thing, no matter how small.  Then breath.  And then do another.  Put one foot in front of the other, move forward, no matter what the speed.  There's no magic answer.  It's one choice at a time.  You have to go your own way, find a way to integrate it all, to cobble all the pieces together and make yourself feel whole again. 

To allow yourself to be capable of being filled up with those moments of sunshine and warm breezes, no matter how far you are from the ocean you wished they came from.

To allow yourself to co-exist in the pain and fear of your journey's past and the wholeness of your present. 

To allow a song to bring back some of the most painful memories of your life and one of the most beautiful ones as well.  You don't get to pick and choose.  You are the sum of your parts, of your experiences.  You do choose how you assemble them into your present.

My 5.5 year old daughter recently climbed next to her almost 4 year old brother in our over-sized chair.  He was tired and in pain and just sick of not feeling well.  He hasn't had chemo in five months.  This is just life now.  She stroked his hair and said, "Joshie, if you die and I'm still alive, I'll ask mommy to take me to the box where we'll keep your body.  I'll ask her to lift the lid and I'll put your toys inside. Don't worry."   He said, "Thanks, Penny."

I find myself thinking, "I don't know how she does it."  How is she so tough?  The truth is, just like her momma, she's not.  She can't sleep without a picture of her family, all of us, hanging next to her bed.  She just does the best she can.  She just knows that deep in her core, her life is entwined with his, that walking with her brother means going wherever the path may lead.  She'll do it, for him. 

I live with two little superheroes, some days, in comparison, my troubles do seem small enough that they could melt like lemon drops.