Notes Left Behind

I can’t tell time. For ten years I wore digital wristwatches – the cheap kind. Some had timers, others could tell me the time in England if I were to ever travel outside of Ohio and one had a calculator (that was the expensive one – at least $35). Telling time was easy: look down and read the display. They even had a backlight if I was ever in the dark. Then came the pager and suddenly the watch was redundant. And for the next five years my watch was on my belt. Then I got married. Brooke thought I should wear a watch once again, but this time I would get an elegant watch. No more black plastic – this one would be made of metallic silver and decorate my arm. She said that I needed to look sophisticated and the watch was the first step of many to come. So like a paper doll, I bought a new watch and wore it again for the first time in five years. This time it had hands and no numbers. I suggested a compromise. How about one with hands and a digital display? That’s when I realized it wasn’t my choice.

That was ten years ago. And for eight of those years I wore a watch I couldn’t read. Sometimes I’d show up and hour late, other times an hour early, but never on time if I relied on my watch. Some people would ask the time and I’d look at my watch puzzled. “It’s this time”, I’d say, offering them a glance at the silver piece of jewelry hanging from my wrist. Sometimes I’d quickly look at my phone as they looked away to confirm. A watch without numbers was always pointless.

Sometimes the watch battery would die. Still, I’d leave it on my arm for weeks, never noticing until Brooke asked me for the time. During time changes it would go a week or two before I’d finally change it – also usually when Brooke would as for the time. Then came Elena. One of the last things that she learned in kindergarten was how to tell time. And while she too never comprehended the purpose of a watch without numbers, it never prevented her from trying. When we went to the Memphis, her teacher told her to practice telling time. Good thing, because when you’re waiting for your “always late” radiation appointments it’s about the only thing you do. So she and I would practice together – counting each arrow on the face. In time she mastered the hours and I filled in the minutes. She had found her skill and I helped her with mine. Cooperatively we knew the time. We were no longer an hour ahead or an hour behind.
 

Last week my watch battery died once more. This time I noticed immediately. I still can’t tell the time and part of me never wants to. Still the watch hangs from my wrist and serves as a reminder of the way she touched my life. And whether I never change it from eastern daylight time to Eastern Standard Time, each second that clicks by signifies a part of me that never wants to forget. Together we could tell time – just as we could do so many other things as team. I will never buy another watch with numbers – just don’t ask me what time it is.

Lately I’ve been thinking a lot about Elvis. No, not because he’s been suddenly sighted wandering the halls of my home now 32 years after his death or even because I’ve recently spent too much time reading tabloids in the checkout lane of the local grocery store (which I have considering how many ingredients Brooke failed to get for the holiday parties). Instead, I’ve been thinking a lot about Memphis, Tennessee and whenever you think of Memphis is always hard to ignore Elvis. He’s part of the history, part of the tourism, even part of the local menu as you order everything from Elvis Waffles to Elvis Hamburgers. He’s even part of the bus line.

 
Visiting another city without any preparation is never easy, especially when you come to that city after discovering your daughter has cancer. But instead of coming for the sights, the music and the culture, we came for another thing: hope. And on that cold November morning, it was the only thing that kept us going. And so Elena and I began our journey, starting with a bus ride to a hospital we never hoped to visit. At the time it represented depression, loss and sadness. After all, how inspiring could a hospital that treated children diagnosed with terminal cancer be? Instead, at St. Jude Hospital we discovered the impossible. We not only found that hope, but we rediscovered our determination and love for life as well. And in doing so, we discovered Elena and the lessons she left behind.

 
At a recent book signing, people stroll by and ask us what our book is about. I used to tell them it was about my daughter, her fight with cancer and the lessons she taught us. In return they’d thank us for writing the book, comment on how they couldn’t read such a sad book and continue on. Refining our synopsis we’d tell the next person it was about learning to be a parent, how our daughters were our heroes and how the proceeds benefited cancer research. They’d too offer some sort of blessing, a tilted head and a comment on how they couldn’t read a sad book. So when the third person asked, Brooke suggested we simply tell them it was a book about a cute and cuddly dog. I told them I had no idea what the book was about and they’d have to buy it to find out. And thankfully, we ultimately sold the book.

 
The first 20 pages of the book are sad. I can’t help it. Still, it is a journal ultimately written for Gracie and no one else. And for this reason, it also teaches lessons. So while the first 20 pages are about cancer, pages 21-248 (or in her case, pages 21-684, since she has the original version) are about hope, about life and about the joy that Elena taught us each and every day. Those that make it beyond page 20 know this to be true. Those that don’t simply tell us how they cried.

 
In the end, the book is no more about sadness than St. Jude Hospital was to us the first time we walked through the front doors. But where we thought we’d lose ourselves, we instead rediscovered our family and our hope. And it is the happiest place I can imagine still today. For there, in the heart of Memphis, families from around the globe rediscover that life and childhood is all about.

 
But there is more, much more to learn about Memphis than just a hospital; there is also a bus driver. Complete with sideburns and a slightly overweight appearance, you’d swear he was Elvis’s younger brother. Later, as we would get to know him, we discovered that in earlier times he and Elvis had actually spent time together as teenagers, ultimately becoming part of the traveling entourage of the hometown hero. But for now, he was a bus driver to his own special group of heroes. And so greeting us each morning on our lonely trip to the hospital, he reveled in the challenge of making Elena smile through the steroids, sometimes commenting on the stuffed animal she’d brought with her or even joining me in renaming her “Fred” in honor of the steroid frown patterned across her face. Most times he won the battle, finally earning her love after joining her fight for the pink cowboy boots that Mom offered as a prize for successfully completing her first awake radiation treatment. And from there on, he would always be known as “Elvis” to her.

 
When I look back on Elena and reread the book, all I can think of is Elvis. The tears still come, but they are also frequently accompanied by laughter as we talk about the bus ride, the boots and her smile. You can’t help it. So the next time someone asks us what the book is about, I’ll reply that it’s about Elvis. Maybe I’ll even tell them he had it all wrong when he wrote the song too. After all, who says you need blue suede shoes when you got a pink pair of cowboy boots?

From the beginning, Elena always knew the perfect places to nap. In the summer it was a warm sunny day in the grass after finishing a bowl full of strawberries. Winters ago it was on the couch while the Bengals lost their most recent game. From our first weekend together to our last, it was our shared tradition: her head in my arms and shoes off.

Not that I had a hard time sleeping. Between Mom and the girls, it was commonly known that Dad could sleep through everything. Even without Elena’s help I’d fall asleep in the theater, in the car and even in the restaurant waiting for the waitress to take our order. I’d claim it was because of work, yet they knew I was lying. I was just lazy.

In truth, after Elena’s diagnosis I could sleep no more. So I’d feign exhaustion, waiting for the moment that Elena would nod off to sleep, only to spend the next hour marveling at her silky hair, her soft cheeks and her peaceful smile. Somehow sleeping could wait.

So when Elena suggested that we go to the Nutcracker, everyone immediately suspected that Dad would never make it out awake. In truth, I even had my doubts. For years past I’d thought of every excuse to skip the ballet. When Elena asked the first year, I told her we didn’t have the money. When she asked the second year, I told her we didn’t have the time. When she asked the third year I had no more excuses to offer. And this time saying “no” meant that we may never have another chance.

Now ballet is an art. A refined art that demands the utmost skill, balance and beauty of the performer. And for the audience you should expect no less. This I did not anticipated. There were elaborate dresses, elegant hair and lipstick – and this was all for Elena. From six in the morning until two in the afternoon, Elena was quaffed, manicured and doted on by an army of stylists and grandmas, all eager to offer their own suggestions and ideas. And before it was done, she was complete, all the way down to her sparkly ruby red shoes.
Even her smile sparkled. This was Elena’s night to shine – a night I wished we’d had years before. And as the curtain opened so did her heart.

Now I’d love to tell you she was enchanted; that for the next two hours we reveled in the majesty of the nutcracker and feared the return of the mouse army. Instead, before the very first entrance of the sugar plum fairies, it was Elena who fell asleep in my arms while I stayed awake for the entire show. Still, if you ask about the ballet, I couldn’t tell you what I saw; my eyes watched my little girl sleeping ever so softly against my shoulder.

To this day, if you look on our mantle, a lone Nutcracker keeps watch over our home. It is the one Christmas decoration that remains throughout the year; a constant reminder to capture the memories that we share as a family and never to let them slip between our fingers; no matter if it is the ballet or even a simple nap on a Saturday afternoon. As I said before, Elena knew all the perfect places.

Happy Birthday Elena!

I’ve never known anyone that died from global warming. Not in my family, not in my circle of friends, not in my city and probably never will. Still, I know over 12 people who have died from cancer and 20 more that suffer from it.

In 2007 the World Health Organization (WHO) said that 150,000 people will die from global warming worldwide. In 2030, they expect this number to double. Conversely, the WHO says that nearly 7,000,000 are expected to die from cancer worldwide this year alone. And in 2020, they expect this number to increase by 50%. That means that in the next 25 years, there will be 4.2 million deaths from global warming while cancer will kill over 220.5 million people worldwide. That’s nearly 53 times more deaths than global warming.

Politics don’t matter. Regardless of what you may think about global warming, priorities matter. Whether you think that the ocean levels will rise or hurricanes will grow intensity, you can’t argue with numbers. 1 out of 40,000 of your friends will die of global warming while 1 out of 400 will suffer from cancer just this year. And within your lifetime, you will no doubt know 70 more cancer victims. Worst yet, it is one of the only diseases that affects developing and industrial nations equally. Still we buy electric cars, conserve fuel and fund carbon credits. When was the last time you bought cancer credits?

I watch the news and wonder. What would our world be like if we truly gave cancer the attention it deserves? Would we finally save our father, our wife or maybe our child? Would we concentrate on a cure instead of symptoms? Or will you be the next one to wonder if you could have done more? As I write this today, world leaders are insisting that we spend $200 billion on global warming. Only $100 billion is currently on the table. Meanwhile our President proposed less than $5 billion for a National Cancer Institute research budget in 2009. So while we spend $1.3 million on prevention and research per casualty on global warming, we will spend less than $715 dollars on prevention and research per casualty on cancer research. And then we wonder why we cannot win the war against cancer. Worst yet, the money we do spend is often misdirected in a political numbers game that ignores those rarer cancers that may offer us a vital chance of achieving a “homerun” cure for all cancers.

I don’t presume to understand the effects of global warming or any other battle we face as a nation or as a world, but I do know that knowledge is the key to saving yet another child from death. Cancer is second only to cardiovascular diseases in global mortality, yet increasingly we seemed convinced to accept it as a condition of life rather than a preventable disease. And in many cases, cancer is unavoidable. With the exception of cigarette created cancers, the victims are both young and old and share no fault in their condition. Shouldn’t we do more and shouldn’t our dollars, our awareness and our politics represent our priorities? Pick your political issue: global warming, the war – nothing is more important.

I never cared for politics – I only care for issues. And this is an issue we should care more about. Cancer isn’t just a disease, it is a war and the casualties might be within our own family. I know this all too personally. I lost my daughter to cancer. It’s time we give it the attention it deserves. That’s the inconvenient truth.