Monday, April 1, 2013

Springing into Action

I love love love Spring.  It gets a little overwhelming at times with all the birthdays and Easter.   My birthday marks the time of year I remind myself to get my annual checkups. No wonder I dread my birthday- yeesh. I don't dread it because I am a year older- I have long cherished every year I get to celebrate. This year marks the first year I have visible gray hairs. Every so often Phil and I compare- he's winning by the way!  It just compels him to be more dilligent on shaving his head- me- I pluck the rogue ones that draw attention to themselves- but mostly I'm not bothered-yet. To me this is a right of passage that so many in my family- so many with Li Fraumeni Syndrome are robbed of. I am not in a hurry to cover them. Like the wrinkles that crinkle at my eyes and catch my tears from time to time- I have earned each and every one of those wirey sparkly bits of tinsel. And just as with decorating the Christmas tree- too much tinsel is a bad thing- and when that time comes I will proudly cover my badges of courage just as I have learned to cover the emotional and physical scars of this journey.

It was a year ago that I made an appointment to have a lump on my arm checked out. A little hard lump that I noticed one day while driving. It became a compulsion- every time I got in the car- I would feel it. Never bigger, it moved slightly when prodded. But my gut said- it has to go, get it out.  It made the other lump- the one that would come and go with the monthly moons seem a little more ominous. Common sense tells you to deal with it- ignoring it will not make it go away. Yet in your heart- you have to be ready to face the battle ahead and each time you go to battle- a little piece of you is chipped away- sometimes emotionally- sometimes physically - either way- it's a little tougher each time. It doesn't get easier because you have done it before. It's not like riding a bike or something you can practice at and get good at. There are no Olympic medals for fighting cancer- although if you know of any celebrities who have gotten cancer- you know all cancer warriors are not equal and there are very different battlefields.  Such is the battle of life.

We had a birthday party on Saturday. A last minute invitation from an old friend. The lateness completely unintentional and a testimony to our hectic schedules- as it was a beautiful hand delivered message in a bottle invitation for a mermaid themed beach party. How could I say no to that- despite Saturday being Phil's only day off- the only chance to paint eggs as a family and have Easter dinner- since he was working Easter night?  So I slightly adjust the day's plans to include a couple hours at the party- managing beforehand to paint Kiera's nails which I had been promising to do for a week with cute Easter patterns and in 24 hours the theme would be late. We arrive late to the party- and just in time for me to escort 5 giddy girls down to the water.  I nod to the other party moms and am somewhat grateful to not have to engage in chit chat- it's not something I'm good at. I notice the birthday girl's mom pulls me over to introduce me to another mom who is sitting by herself at a table. I smile- but the girls are making a beeline for the waves- I excuse myself. The girls are soon cold and hungry and we make our way back to the party.  I get my girls plates, grab a quick bite and start the potty trips- oh the life of a mom!  Before I know it- Lily is laying on the picnic table claiming to be dying of stomach pains. Bathroom trip #85. Including me and a bathroom maintenance guy having a pretty descriptive discourse as to the nature of mess he would be finding if we were not expressly allowed admittance to the lavatory. He politely explained it would be 5 minutes. Lily screaming that she had to poop helped.

Upon returning to the party- party mom had noted  the rather volatile nature of my middle daughter's temperament and proceeded with the cupcake ceremony- always an event that can soothe the most grumpy of beast. It was time for us to leave- I told our host when we arrived that our departure would be premature and explained why- there was a pricey non cured vegetarian fed ham awaiting my attention.  She pulls me aside and drops the bomb-  I know you have to leave- but the mom I introduced you to earlier- um well - I think you have a lot in common and would you mind talking to her for a few minutes? I hesitate. A few minutes won't hurt- I can get the ham on the table by 7- it's not a school night. She continues- her older daughter has leukemia and I think you could really help her. It's like one of those movie moment realizations- I look over and wonder how I missed it- a woman sitting alone- closest to where her younger child is playing with the other girls- what could be construed as shyness or helicopter parenting is just plain old sheer exhaustion. In that moment I feel horrible that I missed it- that I have put up my barriers to others struggles because I have been so focused on our own. Part of me wants to run away. Part of me knows the universe throws these landmines in our path for a reason. Sometimes you have to pull the scab off. So I pulled. In the few first moments I could not even get words out- I became that person- the person that came up to me time and time again after Lily was diagnosed with tears and I ended up comforting them. A dad standing nearby made a beeline for the barbecue.   Yet you are never as strong as you are when you are helping your child battle for their life and I know this now. I also pulled myself together and explained- choking up- I heard her daughter had leukemia- she nodded preparing herself to hear what everyone else says- they are so sorry- is there anything I can do- but instead I pointed to Lily. She's my survivor. She didn't have leukemia- but she had and exceptionally rare cancer with a very poor prognosis. This is the hardest time in your life- you will never be as exhausted or as strong as you are now and you will get through this. You will find strength in places your never expected and people will surprise the hell out of you. Ask for help. Sleep when you can and don't worry about the little things- when you get through this- they will be there and you can deal with it then. By the time I stopped talking - I realized we were gripping each others hands-me unsure of who was helping who more.  We talked for over an hour. We laughed about things that would mortify those who had not been through the journey. And so the scab bled- and still bleeds. But sometimes you are given an opportunity that reminds you of your purpose. I had been feeling very low about where I am at- where I am going. Even Phil finds relatablity on Sportscenter- Stewart Scott said "The worst part about cancer is that it robs you of the ability to make plans".  And we laughed. You can make plans- and just watch the show as they implode- sometimes it goes down like a tube of mentos in diet coke. Ahhh plans.

When you are living cancer- you have support coming out of the woodwork. You are on autopilot- "you don't have time to think up there- you think- you die". And you spend the recovery years trying to pick up the pieces- putting them together- but the moving forward is tricky.  You are terrified to make plans that will get annihilated by cancer yet you are surrounded by the urgency to get as much accomplished as humanly possible before time on the clock runs out. All the while the clock it taunting you- reminding you that you haven't accomplished things while daring you to make plans so you can face the ultimate disappointment. And so through it- you pretend to be normal and you get immersed in normal things and you pretend to forget about the parts of your life that have left the biggest scars. And under that scab was a great big scar- but spring is a time for new beginnings. And that scar was once an open wound and it healed- and now it's time to keep on keeping on and if we are lucky we will be able to look back on these times and have lots more scars to compare- because although those aren't the only remnants of the battle- they are the ones that bring us together and remind us what we are fighting for.

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)