Rebuilding, One Brick at a Time

Monday, October 12, 2009

Avik: Why do you want to bomb Dresden? 

Walter Russell: There’s a monster in a room. Once that room was filled with everything that was valuable to him. His train sets, his puppet theatre, his model planes. They’re all broken now. All that’s left untouched is his beautiful collection of Dresden china. You go into that room, you smash all his crockery, then you have broken his spirit.

I realized today that that’s what cancer did. It came into my life and, like an American B12, bombed my Dresden to hell. I was left shell-shocked, looking at the wreckage of what was left of the future I had planned, unsure of how to rebuild it all. When something is vaporized before your eyes, how can you even imagine a day when it is whole again?

What breast cancer does to women is attack them at the center of their femininity – the symbol of female nourishment, sexuality, and beauty. If they are unlucky enough to catch it late, or face aggressive chemotherapy (as I did), even more is taken away – their hair, the blush of their cheeks, their energy. When the dust settles, your ability to survive the aftermath of a cancer diagnosis depends 100% on your belief that life can be good again, that you can feel good again.

Day after day when you are fighting this disease, you feel like crap. You feel like crap for months. The treatment that is supposed to me saving your life is actually killing you – not enough to produce a system collapse, just enough to get you to the brink, because healthy cells can repair the damage, but cancer cells give up. That is how chemotherapy works – it relies on your body’s ability to rebuild itself. You must attack it sequentially, repeatedly, until every last cancer cell is destroyed, even if your healthy cells are brutalized. It’s like a Dresden bombing every week.

I have asked, nearly every day, Lord, what am I supposed to be learning from this? In moments of pain and struggle, I have wondered how losing my hair or being hospitalized or going broke could possibly be helpful to me, let alone someone else. The answer came to me over a few days of Boot Camp, crystallizing this morning when my coach and trainer pointed to the back of my T-shirt with an enthusiastic grin and said, “See? That’s what I’m talking about! SPINE sweat!”

Lou always calls the last set in a workout circuit the “Transformation Set”. It is the set where you feel like you are going to throw up, where you try to summon your strength and your muscles refuse to contract. You’re doing mountain climbers or burpees and your quads are numb, as if to say, “Yeah, sorry, kid, that is just not gonna happen.” Just five or six seconds later, though, they tighten, and you can squeeze one more rep out. That is the part where your body transforms itself, becoming stronger and more resilient, cell by cell. Ironically, am doing to my body what chemotherapy did to it: breaking it down so it can build itself back up.

Looking back in an attempt to construct a Hero’s Journey from my history, I see that Lou has been my unwitting Obi Wan. By challenging me 30, 40, or 50 seconds at a time, he has trained me in chunking it down. Taking a task one piece at time, bearing a weight one pound at a time, crawling through a tough period of my life one day at a time. It is a lesson I could never have learned without going through it, just as the lesson of “this too shall pass” could not have taken root in my heart, had I not used it every day to envision a brighter future. Lou has been my Mr. Miyagi, and I’m not even sure he realizes it.

If you can truly manage to live in the present moment, you will inevitably always either be cherishing or white-knuckling your way through life. We imagine perfect futures where there is no pain, there are no problems, and everything works out. Dreams like that make me think of a parable Bernie tells in his second book – a Congressman meets a friend for lunch and bemoans the state of the world. His friend says, “I know a place in Virginia where there are 300,000 people with no problems.” The Congressmen says, “Where is that?!” He answers, “Arlington Cemetery.”

Life is hard, but not always. The sweet tempers the bitter, the bitter tempers the sweet. I know it is easy to have a philosophical perspective when you have made it to the Other Side of tragedy. Trust me: this peace was hard-won and not easy to cultivate; it took a thousand strokes to paddle to a place where I can look back and see meaning (and even beauty!) in the destruction of so many of my dreams. What I realize now is that, with every stroke, I told myself, keep swimming and you will get there. Miraculously, I was right.

For more on this topic, see my video, “Nothing Lasts Forever,” on YouTube: http://www.youtube.com/watch?v=AacAg3eCsCM

 

Where The Wild Things Are

Tuesday, September 29, 2009

Like many children of the 70s, I love Maurice Sendak’s book Where the Wild Things Are. I was at a party a few weeks back, talking about the upcoming movie, when someone asked, “Why are they even making that into a movie? It’s such a short book!” My heart softened, remembering the story, and I answered, “Because it has everything: gluttony, imprisonment, adventure, domination, loneliness, longing, love, redemption!” A boy runs away from the discipline and restrictions of home and finds power and freedom, only to return for the comfort and love that he left behind… It’s a beautiful story, an allegory for everyone. No wonder we love it.

I have been thinking, throughout this journey, about this idea of “the other side” of disaster, of what recovery is. I read a poem post-9/11 by Judyth Hill called Wage Peace:

Learn to knit: make a hat.

Think of chaos as dancing raspberries.

Imagine grief

as the outbreak of beauty or gesture of fish.

Swim for the other side.

Swimming for the other side: it is exactly what it is like, this journey of recovery and survivorship, because it’s not the shore you just left that you must head for – it’s some other shore, on the other side of a great body of water. Your future suddenly changes, and a forest grows in your room; an ocean laps at your feet, and you must make a choice: swim or drown. Sometimes, you are lucky: a boat sails up, to carry you to the opposite shore, like Max. Sometimes, you are not so lucky: you must swim, or sink.

The journey of survivorship is not like putting one foot in front of the other, because you won’t die if you stop walking. It’s more like swimming, because stopping means sinking, into the dark waters that threaten to swallow you – depression, recurrence, metastasis. You must keep moving. Moving puts distance between you and the moment/experience that changed your life forever. You have to keep swimming for that other side, because it is the side where your new life awaits, where you can dry off, regroup, and regain your strength without being surrounded by collateral damage. Turning back for the shore you left will not (and, in fact, cannot) save you.

My roommate in Kaua’i often walked with me on weekends around a loop near our house, where there was a view of the ocean. Walking it, you were never more aware that you were on a rock, in the middle of the Pacific, miles from a major continent. I feel a little like Max now, like someone who sailed, over a year and in and out of weeks and through a day, to a place where wild things were, things with terrible teeth and terrible claws, that threatened to eat me up.

I have said it before: cancer does not play. It IS a Wild Thing, and it will eat you up if you let it. Perhaps this is what I am trying to do with my 40-by-40: to say BE STILL, and tame it with the magic trick of looking into its yellow eyes without blinking once. To let it know that I don’t play either, and frighten it into making me its King.

Yesterday, my doctor’s nurse told me my labs were normal, showing me the report with a flourish. “You should frame this!” she said, smiling. “You know, in this office, we get used to seeing levels that are not in the normal range, but when I saw yours, I said, ‘they’re all normal!’ look, no Hs (for ‘high’) or Ls (for ‘low’)!” Now, I don’t usually put much stock in statistics, but in that moment, it was as if, like Max, I could suddenly smell my next life, on the other side of this adventure, like a hot supper waiting for me. I told my sister this morning, “I feel more like myself again. Not like that fake-it-till-you-make-it positivity, that is just supposed to carry you through the hard part; it’s real, genuine optimism, the kind you have when you believe in your own power.” It’s the kind of self-assuredness, I think, that allows Max to say to the Wild Things when they protest his departure, NO, to wave good-bye and sail away without regret.

There are moments of calm (usually post-wild-rumpus) where I feel a kind of peace, knowing in my heart that the time to leave this place I have been in for nearly a year is out there, that the other side of my journey is waiting, like Max’s still-hot dinner, for my arrival. I once told my roommate, on a walk, that it felt like I had survived a shipwreck and was now floundering in the ocean, not knowing which direction to swim. She said, “Maybe you don’t have to know. Maybe you could just swim towards the place where you’re done with this part, and then think about your next leg once you get there.”

I swam and swam, and here I am: washed up on the shore of a kind of “Health Island.” Where the Wild Things Are.

The Burning Bush

Monday, September 28, 2009

For a time during my battle with breast cancer, I felt like God had forgotten me. I saw my future laid out before me – unemployment, foreclosure, bankruptcy – and could not imagine that this was His plan for me. “Really?” I wanted to say; “Really? This is the plan?”

Personally, I think of God the way you think of a parent; I imagine Him making some decisions for me, and letting me make the rest. Watching with a benevolent eye and hating to see me screw up, but understanding that sometimes, I need to in order to learn a hard lesson. It’s hard to watch someone you love fall down, but sometimes you have to stand back so they can learn how to pick themselves up. The hardest part of being the parent, I imagine, is making your kid do something they don’t want to do, because you know it’ll be good for them. I can’t count the number of times my own father forced me to buckle down on my schoolwork, and truth be told, it took me 15 years to see that all the good times I had in college were the direct result of both of us working together to make that future possible for me. If I wasn’t blessed with a diligent dad and faith in his plan for me, I might have walked a different path in life.

Faith is so hard to have, especially in things you can’t see, hear, or touch. I mean, Moses at least had a burning bush! All I have is the feeling when I walk into the building I work in – that I’m in the right place – and two pieces of Scripture: Jeremiah 29:11 and Job 8:21, to reassure me that the future ahead of me is worth living for. So often, I feel like I’m blindfolded, walking by faith, not by sight. It’s terrifying to love a job that can’t pay your bills, to wake up every morning not knowing if something is growing inside your body that could kill you. But what else can you do if you want to maintain your sanity? You tell yourself, “God knows the plans He has for me; plans to prosper me and not to harm me. Plans for a hope and a future.” You say, “He will yet fill my mouth with laughter, and my lips with shouts of joy.” You remind yourself of other times in your life when you thought disaster was imminent, and you survived. You survived. You take comfort in knowing that you can’t take anything with you when you leave this earth – not your riches, not your debt. We come in with nothing and we leave with nothing, and no one knows when their number will be up. Not even people with millions of dollars or perfect health. All we can do is be thankful for each day, and the blessings in it. Wake up each morning and be glad for one more day – one more chance to breathe and live and love.

What gives me faith is not only gratitude for the blessings in my life, but giving God credit for those blessings. I keep a journal, and every evening before bed, I fill a page with things I’m thankful for – a light that stayed green long enough for me to get through it, a penny I found on the street, a kid who made me laugh at work. Little things, big things, it doesn’t matter – the important part is giving God credit by thanking Him for bringing them into my life. The distinction is important because it helps strengthen my belief in a benevolent, caring Creator who watches out for me. It’s hard to hate or fault someone you’ve been thanking night after night for all the good things in your life. I’ve found that, after months of keeping this very specific kind of gratitude journal, I’m more likely to ask God for strength to get through something than ask Him why it’s happening, or be angry with Him for bringing it into my life. Since I started crediting God with all the good things in my life, I trust Him more, and question Him less. You may say it’s just a psychological trick or religious hoo-doo voodoo, but if it gives me peace of mind, does it matter?

Yesterday, I sat in a sunlit meadow after hiking 11.5 miles with two of my best friends, catching up with the first boy I ever slow-danced with, who just happened to run into us on the trail. We were eating a delicious lunch and listening to great music, and I suddenly teared up, counting my blessings. How many survivors, three months after chemo, could hike Mt. Tamalpais, and enjoy the company of two friends (one who came all the way from Catalina Island!) who raised nearly $800 to hike with them? Who else but the Creator of the Universe could negotiate such a logistical miracle? To ensure that we all came to the right place, at the right time, in the right frame of mind, so that all our needs could be met in one sunlit moment? Breathing the sweet air of the Marin Headlands, all I could think was, He will yet fill your mouth with laughter, and your lips with shouts of joy. It wasn’t a burning bush, but that moment, I knew that God counted me, that He has a plan for me, and that it IS a plan to prosper, and not to harm me.

It is the hardest thing, especially for us Type As, to entrust our future to something intangible, unprovable. It is the biggest gamble, to believe in a Higher Power that is greater than ourselves, and the scariest part is the possibility that His plan might be different than our plan. What helps me is reminding myself that I don’t know everything, and cataloging those moments when things work out so beautifully that no amount of human planning could have produced the same result. That, to me, is proof of Divinity, and its role in my own journey.

Recovery and The Pre-Disease State

Friday, September 18, 2009

I’ve been thinking lately about the word recovery. In medical terminology, recovery is “a return to the pre-disease state.” A return to the pre-disease state.

We have, in our culture, an erroneous idea that we can somehow avoid change. That, should disaster strike, we can rebuild, take medicine, start over, and miraculously return to our previous (“pre-disease”) state. But we can’t, can we? We can’t ever return to the pre-disease, pre-divorce, pre-disaster state. The truth is, we can’t ever get back what we’ve lost, and that is what breaks our hearts in the aftermath of a tragedy.

I did the Avon 2-Day Walk this weekend (I’m still fundraising, if you’d like to donate) – the first event in my 40-by-40 series – and I guess I thought that completing it would represent my “return to normal life,” the first step on the road to being my old, active self again. I thought, if I do the things I used to do, I will get back to being the me I used to be. Before we even started to walk, though, I felt like a Vietnam vet at a Peace March. And for two days, everyone around me was walking to support or remember someone who had gone through what I went through, but I felt utterly disconnected from all of them. Only the survivors who cheered from the sidelines reached me – the women without eyelashes wearing baseball caps. Walking past them, I wondered if this is what concentration camp survivors felt like post-World War II, if they saw other skinny people with short hair, if they reacted to wrist tattoos the way I react to port scars, their heart sinking in the knowledge that their pain is not a solitary one.* On the walk, I would see a woman on the route, sometimes with her friends and family, sometimes alone, and think, I’ve been there. Every time I recognized someone clearly still in chemo, I would leave the walk to hug her hard and say, it comes back; it all comes back.

What I realize now is, I was wrong. It doesn’t come back. Your hair regrows and your scars heal, but you will never, ever get to be the you you were again, after cancer. The idea that you can take medicine and be the person you were before is a terrible illusion, one we maintain for the sole purpose of just getting through it. That is the tragedy of surviving something – you come out the other side of it different, unable to return to the life you had before.

The Hero’s Journey is the story of all survivors. It doesn’t ring true unless the Hero is changed by his experience. What happens, though, when the you that you are after cancer is not a person you ever wanted to be? I remember being in an ACS office earlier this year, staring at a poster for the Relay for Life, when someone said, “You can walk in the Survivor lap.” She meant it as a compliment, I’m sure, as an affirmation of my victory against a potentially terminal illness, but I started to cry, thinking, I never wanted to be in that lap. I wanted to be the one walking in support of the people in that lap, but I never wanted to be in that lap.

Women like my sister, who never imagined themselves as divorcees, fumble in their newfound singledom. My Aunt Audrey, who survived Katrina, sounded detached and confused when I talked to her after the storm, saying, “They said we would only be away a day, two at the most, and when we went back to the house, there was nothing left but a wall and the front porch. All my jewelry was in my bathroom drawer, and I don’t even know where that is anymore.” We tell divorced women to start dating and hurricane victims to rebuild and cancer survivors to wear pink ribbons, and it all feeds into this idea that we can somehow get back what we’ve lost, but the truth is, WE are the Orpheus in the story, NOT the Eurydice. We think that we can go into Hell and bring our old selves back with us to Earth, but we can’t. Try to look back, and we lose her forever.

In the opening remarks of the Walk, the announcer said that every three minutes, a woman is diagnosed with breast cancer. Moments later, she said that there are two million survivors in the U.S. alone. I thought, Jesus, that’s not very many. Dr. Bernie Siegel, in his books, talks about cancer being a manifestation of unrealized potential. The idea is that, if you deny your sense of purpose, your true path in life, all that energy manifests in your body as cancer cells that refuse to die. Cancer gives many people a new start: an excuse to be the person they never gave themselves permission to be. For others, though, the fallout is unsettling, disorienting, and discouraging. All they want, despite their very existence being threatened, is to go back to the way they used to be. When they realize they can’t, they have one of two choices: build a new life, with a new future, or give up. To be or not to be, Hamlet said. I wonder, though: who is the coward – the one who sleeps, or the one who chooses not to?

My grandfather said to me once, regarding his bypass surgery, “I sometimes wonder if it was worth it.” He struggled in his last months with horrible edema in his legs, which got so bad he couldn’t walk or drive a car. This man, who was the captain of a Navy ship, could not even go to the bathroom by himself. Realizing he could never be what he was before, that his future could never be the future the old him saw for himself, he took his own life. I often wonder if my mother felt the same disillusionment; if her suicide was the result of her life ending up in a corner she could not see how to paint herself out of. She was 39, divorced, without custody of her children, unemployed and mourning the loss of her own mother, with two failed careers behind her. To justify her decision, I tell myself that she was simply incapable of imagining her recovery from what must have been the hardest year of her life. Many women can’t, after disaster. They simply cannot see how life can get better, cannot summon the strength for another climb up the ladder. I have been there myself. Perhaps what has saved me is the other half of my genepool – my father, who was such a wonderful example of resilience. Twice divorced, laid off at 53 from a company he had worked with 24 years, he died from an enlarged heart the weekend before he was to open his first small business, six months before his first child graduated from a 4-year college. He died because his heart was too big. This was the same man who always told me, “Look 20 miles ahead,” perhaps to remind me that the solution to one’s problems may be far away, but if you can at least imagine it, you can get there one step at a time.

I play a game on my iPhone sometimes called BPop. There are five levels, each with the potential for scoring 10,000 points. I have gotten such a high score on it (29,000) that now, if I do not get 7,000 points by the first level, I reset the game and start over. Why play through four more levels if I cannot beat my highest score? Some people see a reset as a step backwards – a starting over at square one – and some see it as a second chance, to best your highest score. Your resilience after tragedy depends on your perspective, always.

This is what post-cancer looks like: resetting. Resetting everything. Building a ladder and climbing it one step at a time. You make lists of things to get through, things to check off, and those things are your rungs. Each time you reach a hiccup (an unforeseen infection, a claim rejection from your insurance), you start over, but you keep climbing. Two steps forward, two steps back (sometimes three steps back!). The progress from diagnosis to remission is mind-numbingly slow, and sometimes all you can do is count the days that pass, the days that mark the distance between treatment and non-treatment. You cannot say “between illness and health,” because you never feel healthy when you have had cancer. You are always acutely aware that it is something that can come back, despite your efforts, but the necessity of feeling safe in the world forces you to at least note the distance between the meat of your illness and this post-illness state where you are at least not being treated for it. As the distance increases, so does your security. At moments, you can even forget, during this post-treatment life, that you were ever sick. Time inevitably marches on, and I tell myself, I will have a day in my future when I do not have a doctor’s appointment next week, when I am not taking a pill to treat something that threatens my life. Perhaps on that day, I will feel, not like my old self, but like a person who has reached the other side of some deep lake I had to swim across.

Will I ever recover? I ask myself. No, I realize, but I can survive, as someone else. I can swim for the other side, where a new me awaits.

Getting to the Top

Saturday, September 5, 2009

This afternoon, I hiked the Lafayette Reservoir Rim Trail – a trail I haven’t hiked since I left California over a year ago. At 4.7 miles, it’s not that far, but it has six pretty steep hills, including one that looks almost vertical! I did the loop twice, to prepare for my Peak Hike to Mt. Tam for breast cancer at the end of the month (you can see pictures on my Twitter Page). That hike is 11.5 miles, and I want to be ready.

Alone with my thoughts on the trail, I realized something: when we fall down, and have to pick ourselves back up, the hardest part is believing that things can be okay again. We might start to think, maybe I’m not special or destined for greatness after all. Maybe I’ve just been lucky the last few years, and my luck has finally run out. When I hit my bottom in Kaua’i, I thought to myself, if all I have left to look forward to in this life is unemployment, foreclosure and bankruptcy, why am I still going to chemo? I could not even imagine myself, in just six months, employed at a job I love, surrounded by people who make me smile every day, hiking a double loop of a trail a mere 10 weeks after finishing chemotherapy. I would have missed all this, if I had allowed myself to check out of life.

I was thinking today about Persephone and Eurydice. In Greek mythology, Persephone is the daughter of Ceres. Hades, the master of Hell, falls in love with Persephone and kidnaps her to be his bride and live with him in the Underworld. In another story, Eurydice, the wife of the musician Orpheus, dies after treading on a snake. Orpheus travels to the Underworld to bring her back and plays music for Persephone, softening her heart. Persephone tells Orpheus he can lead Eurydice back to the world above, but only if he walks in front of her, and doesn’t look back. At the last moment, though, his insecurities plague him, and he turns around, only to watch Eurydice vanish forever.

When you find yourself in Hell, you must ask yourself, am I a Persephone or a Eurydice? Is your Hell a place that you think you will just have to get used to, to learn to live in? Or is it a place where, with enough love and devotion, you can climb out of? And I’m not talking about pining away, waiting for an Orpheus to come and rescue you. You must be your own Orpheus. You must rescue yourself, one step at a time.

With every step I took today, I imagined myself climbing up and into my new life, into the life that, at one time, I had no hope could even exist. I look in the mirror now and there are eyelashes that weren’t there two months ago, a body that, thanks to Lou Kristopher’s Boot Camp, is stronger and healthier than it’s ever been. For the first time in months, I can’t just see the light at the end of the tunnel. I’m there, standing on the threshold.

All I have to do, it seems, is keep moving forward, to the life that is waiting for me on the other side.

Wows and Woo-Woos

Wednesday, August 12, 2009

I look in the mirror these days, and while I sometimes still don’t recognize the person staring back, I know I am in there somewhere. I think about this journey I am beginning, of survivorship, and all kinds of metaphors come to mind.

A woman in my support group here asked me, while we were at our second radiotherapy appointment together, “Do you know what it means when the machine is clicking? Are those the radiowaves shooting out, or is it scanning us?” She was a sweet and somewhat nervous woman, young like me, and had been struggling with a stressful work environment where she felt manipulated and under-appreciated.

We had talked before about her job and how hard it was, but also about how good the money was, and I had asked her, “I’ve read about women with cancer saying, ‘I will make this work if it kills me,’ when it comes to difficulties at their jobs. But what if it does? What if it kills you?” She replied, “I know, I know, but I can’t afford to quit right now.” I know. I know. I thought, at the time, yes, I knew once too. Yet here I am. Stage IIIA: just shy of metastatic breast cancer.

Some people who fight cancer take comfort in knowledge. White blood cell counts. Survival odds, based on statistics, culled from years of Big Pharma data. You can find these statistics online at various websites devoted to the numbers of cancer. If you have x number of treatments of y drug at z intervals over a months, then you have a b percent chance of being alive after c years. Numbers comfort many people, because it gives them something to hold onto that has been verified by the very industry that is treating (and, they hope, curing) their dis-ease. In a land of uncertainty, numbers comfort us.

The thing is, if you ask any scientist what a fact is, they will have to agree that a fact is simply an opinion that most people agree on. At one time, remember, it was a fact that the earth was flat. All science can really tell us is that x number of people have tried y, and it worked for z of them. Drugs work for some people, and don’t work for others. Why they work is just an assumption, based on other assumptions. It’s also important to remember that why they don’t work is an assumption too. For all we know, listening to Van Halen’s  “Dance the Night Away” cures cancer, but because someone isn’t asking people in chemotherapy if they’ve heard it during the course of their treatment, we don’t really know, do we? My friend Greg ignored all his doctor’s advice when he was diagnosed with Hodgkin’s lymphoma at 20 years old. He drank Natty Light nearly every weekend with his fraternity brothers, believing he was going to go out of this life with a bang. Six weeks later, his tumor had shrunk. Six months later, he was in remission. Does Natural Light beer cure cancer? We don’t know. We don’t know.

The truth is, I have never put *that* much faith in facts or numbers. My opinion is, my body will either heal itself or it won’t. I will either live or die, and only a certain amount of my life is really under my control anyway. What fighting cancer has taught me is that wrapping myself up in judgment over whether my numbers are “good” or “bad” this week or this month can only serve to increase my anxiety, and ultimately, make my life less enjoyable. What keeps me going, instead, is to spend what time I have left on this earth – be it 5 months or 50 years – taking comfort in what makes me feel good, strong, and proud, and not wasting time or energy worrying about being weak, unhappy, or guilty. There will be times in the years ahead (I hope, many years ahead) when I feel weak, unhappy, and even guilty, but they will pass. They will pass! As the Good Book says, this too shall pass.

I have been very careful, in my cancer fight, about surrounding myself with people who have positive, constructive energy. I realized very quickly that people with negative, destructive energy – even when it is unintentional – bring me to a place that drains me of my strength and positivity. I can almost feel my immune system weakening in the face of negative energy. Of course, I knew that, if I was going to be in a giant, clicking, radioactive machine every day for six weeks, I would have lots of time to think about the tumors that had grown in my breast, the likelihood of them growing back, and my long-term odds of surviving breast cancer. I knew that I would need to use the time constructively, not destructively, to help me heal (because ultimately, it is not doctors who heal us, but our bodies that heal themselves). Sitting in the waiting room, next to this woman that I realized I would see every morning for the next month and a half, listening to her worry about her job, about the machine’s effectiveness, I struggled with how I could possibly be supportive and encouraging, and still protect myself from her clearly unintentional drain on my energy.

“I guess I’m just wondering how it works,” she asked, almost to herself, as we sat waiting for the nurses to come get us. I visualized the scene I had been picturing the first couple of days of radiotherapy, that had been carrying me through my own worry, and debated on sharing it with her. “Well….” I said, “You know that part in Lord of the Rings, when Frodo is weak from being stabbed by the Nazgul, and Arwen has him on her horse, and they’re running from the Black Riders?” She nodded, presumably wondering where I was going with this, and if “chemo brain” was a legitimate phenomenon. Suddenly, I found myself tearing up. “Well, when I am in that machine, and I hear it clicking, I imagine that there is this part of me, that is weak like Frodo, from being wounded, and that the things that wounded me – my cancer cells – are chasing me, but that there is this also this stronger part of me, that is like Arwen, and she is carrying me away from them. That she is riding for her life and mine, with all the strength that she has. And when I hear the clicking of the tomography machine, I imagine that it is the sound of her horse, galloping with all the strength that it has, to carry us both away to a safe place. And when the clicking stops, I visualize Arwen calling the river to come and drown the Nazgul, and the radiation washing over me like the river, melting my tumor like they’re it’s the Wicked Witch of the West. So when I open my eyes, I’m like Frodo, opening his eyes after being healed.” I collect myself, wiping my eyes. “I’m not sure what’s really going on when they put us in that machine,” I tell her, “but that is what I think of when I hear the clicking.”

She looked at me, a little bewildered, almost as if she had not really been listening, but before she could say anything, the nurse came in and called her to come down the hall. I sat there after she’d gone, wondering if she pitied me, a woman who invested in daydreams rather than science, and if I had helped her at all by sharing my story.

There are some people, I guess, who just don’t find comfort in what they cannot touch or measure. I am thankful, though, that I am not one of them.

The Big Bang

Tuesday, August 11, 2009

A few days before I left Kaua’i to move back to California, I went to Borders to pick out a journal. It was going to be my “new chapter” journal – the one that I would start when I closed the book on what was probably the hardest 9 months of my life. The one in which I would write a new story, with a happier ending.

At the time, I was hanging on by a thread. I was in one of those places where you feel like God has forgotten about you. Not in a mean way; more like He’s been really busy with getting Obama into the White House and keeping Palestinians from fighting with Israelis and making sure one less human rights activist is being arrested in Myanmar (in considering time-space arguments that explain how Santa is able to get into billions of chimneys in a single night, I often think that God’s ability to evaluate a trillion prayers a day, and still have time tolisten to mine, must have something to do with an as-yet undefined unified field theory). In any case, when I walked into Borders, I said a tiny prayer that He would help me fine a journal that would, perhaps with its cover or pages or binding, give me a sense of hope about the year ahead of me, which I so desperately needed to be better than the year behind me.

As I walked towards the giant wall of journals, I immediately spotted a pale pink/peachy-colored one, nearly in the center of the wall, covered in iridescent butterflies. For numerous reasons that I will have to explain in a future journal entry, butterflies have been a kind of lietmotif running throughout my life, and as I closed in on the journal, I relaxed just a teeny bit. On its cover was a quote from the Bible, a quote I had read just a few days earlier in a card from a Christian friend and 3-time breast cancer survivor: “For I know the PLANS I have for YOU (Jeremiah 29:11).” And wouldn’t you know, I nearly burst into tears right there in Borders. I took the journal off the shelf, my hands (yes) shaking a little, and opened it, only to find another quote inside from the Book of Job: “He will yet fill your mouth with laughter, and your lips with shouts of joy.” How does He do it? I wondered. How does God hear you, and let you know He hears you, when you need it most, despite all the other things on His plate? Perhaps Stephen Hawking, a man who shares my birthday, knows.

In any case, tonight, as I open the journal to write in it, the quote at the top of today’s page makes me smile. It is (of course) from theoretical physicist Edward Teller, and is another one of my favorites: “When you come to the end of all the light you know, and it’s time to step into the darkness of the unknown, faith is knowing that one of two things shall happen: either you will be given something solid to stand on, or your will be taught to fly.” The quote is particularly appropriate, considering I just registered for my first 40-by-40 event: the Avon 2-Day Walk in Los Angeles September 12-13. Which means, I have about 33 days to raise $1800 and be able to walk 40 miles in 48 hours. This is the part that feels like the top of the roller coaster.

All yesterday, I kep thinking, “Oh my God…. Oh my God….” It’s starting. My 40-by-40. My next five years. My journey to survivorship. Considering this, the first chapter in Part II of my story, I can’t help but hear the faint crack of a starting gun, somewhere in an alternate universe where I am becoming everything I want to be.

Taking My Hat Off

Tuesday, July 28, 2009

The truth is, I baby-stepped into it.

First, my sis and I went to see the latest Harry Potter installment in the theater, then we met friends at Sweet Tomatoes (aka Souplantation) for an early dinner. Next, it was running errands and hanging out at my favorite coffee shop, Pacific Bay, and finally, work on Sunday (forgive me, Lord).

By yesterday afternoon, though, after six months of covering my head, I was finally comfortable without a hat, scarf of wig.

The thing they don’t tell you about chemo is that not all of your hair falls out. You kind of look like a nuclear fallout victim, because hair grows in cycles, and it falls out in cycles. You end up with like, two hundred or so sad little hairs poking out of your scalp, six or seven sad little eyelashes hanging onto your lids for dear life, three or four eyebrow hairs askew above them. I think women going through chemo shave their heads for the same reason men shave theirs – because it just looks better without any hair at all.

It was hard watching it grow back in, but not as hard as watching it all fall out. When I lost my hair, the first week of 2009, it was heartbreaking. I mean, I had like, Julia Roberts hair – long, brown, thick, gorgeous. I could wear it curly or straight, and even though I had cut it in anticipation of it falling out, when it finally did, I was horrified. I cried every time I took a shower, every time I looked in the mirror. I couldn’t even hold it together during my last haircut, and made the hairdresser cry (albeit, notintentionally).

It’s not like it all falls out at once, either. It’s more like, when you brush a dog or a cat, and tons of hair comes off in the brush, only, you can see where it’s come off your head, and it just gets thinner and thinner every day. Every time you take a shower and run your hands through your hair, there’s a toupee-sized clump in the drain. Every time you wake up, there’s hair all over your pillow and shirt. You scratch your head under your hat, and there’s hair on your hand when you pull it away, or a clump sitting on your shoulder that you don’t even know about. I lost most of it in a week, and still went through a whole lint roller in just under a month. I tried to reassure myself that it was just temporary, but somehow losing my hair made cancer real, even more real than surgery or chemo. Suddenly, I really did look like a cancer patient.

I kept my eyelashes and eyebrows through most of Taxol, and only lost them halfway through – about two months before chemo was over. Now I really looked freaky. I felt like one of those vampire extras from I Am Legend – dark bags under my eyes, patchy hair, no facial hair. I never wanted to go outside, because even when I felt good, I looked sick. Even my goddaughter stared at me strangely – this sweet child I had known and loved for 6 years, admitted, “It’s kind of weird,” when I asked her what she thought of my “new look.” I started spending more and more time holing up at home, in my pajamas, in front of my computer. Outfits had to be coordinated with baseball caps (I hardly ever wore my wigs because I was afraid they would fall off, or they would make my head sweat as summer kicked in). It was just easier to never go outside. I was becoming a victim of my own reluctance to share my illness with the world.

They say that when the student is ready, the teacher arrives. My sister dragged me to a seminar in Las Vegas to see “The World’s Greatest Hypnotist” who was now a motivational speaker with an MLM pitch. It was only two days, but, as always, clothes had to carefully be coordinated to go with hats, makeup had to be applied to warm up my chemo pallor and nearly invisible eyes. It was the first time in months I had been with a group of strangers who didn’t know my story, and I felt like Dolly Parton, having to put on her face to greet the public.

I asked the speaker, in the Q&A, “How can I forgive myself for the mistakes I’ve made?” and he responded with encouragement and awareness, making me see how I was punishing myself for, essentially, not being psychic. Hindsight is always 20/20, yet we blame ourselves all the time for not being able to prevent disaster. I realized the silliness and futility of wanting my situation to be different, and the necessity of me moving forward in it as positively as I could, with what I had. I couldn’t change that I had cancer, or lost my hair, or all the dreams I had for the future. What I could do, though, was dream a new dream, that started where I was already, and do it without beating myself up anymore.

I took a good, long, forgiving look in the mirror, and realized that there must be other women out there, feeling self-conscious about their appearance, wanting to hole up until it was “all over,” and, as the speaker suggested, thought of how I could help them in their struggles. I saw the danger in my own reclusiveness – by separating myself from society, I was fighting alone. I remembered Rowena’s telling me to “call in the troops,” to fight my cancer, and knew that I was doing exactly the opposite – instead of calling in for reinforcements, I was in denial about the seriousness of the battle I was facing. It was time I reached out.

The YouTube videos started, initially, as an idea I had to be more comfortable with the way I looked. I was so, SO scared, during my cancer fight, to let other people see me weak, ugly, unsure of myself, or incompetent. I was always the rock and the resident genius. It was enourmously challenging to admit I was struggling. History teaches that you must confront your fears, or they will always hold you back from greatness. I thought, “if I can let the people who love me see me vulnerable, perhaps I will finally be okay with it, and will not spend the rest of the time I’ve got left on this earth in fear of people thinking I can’t handle a challenge.” Many of my friends admitted later that they wondered how I was holding up, and feared I was putting on a brave face (as I always did), while being in denial. I told myself, “Okay, I’ll record a little makeup tutorial for women in chemo, and I’ll just let everyone see what I look like under all that makeup, and they’ll see it’s still me, and the friends who are freaked out will fall away, and the friends who still love me will stay, and that will be that.” In the process, hopefully I would inspire a few cancer-driven agoraphobes to put on some mascara and rejoin the world.

The beauty was, no one fell away. All my friends voiced their encouragement, support, and sometimes amazement, over my videos, and I felt so blessed to have a veritable army of supporters around me, urging me on.

I made video after video, and got a real job. I chose a sales position in a healthy, fitness-focused environment, where I would interact with strangers every day, helping them get fit, or equip themselves for athletic journeys. It allowed me to draw on my history and experiences, and gave me something to do to feel useful every day, instead of feeling like a hopeless cancer mercy case, sitting at home waiting for somone to e-mail her with something to pay the rent. The money was waaay less than I was used to, but the environment more than made up for it. I kept uploading videos and people kept watching them, commenting and sending me encouragement. Every time I felt down or depressed, inevitably someone would post a response to one of my tutorials encouraging me to keep up the fight, and thanking me for my inspirational messages.

Finally, my eyelashes started growing back! It started as one dark little stubbie a week after chemo (my sister blames the Xango she made me drink when it ended; I say my body was just reeeeaaally glad to be drug-free again). Then there was another stubbie, and pretty soon, I didn’t have to wear eyeliner every day anymore. My hair was growing in too, and even though it bore a curious resemblence to Willian Shatner’s, I celebrated every new little strand that came in. I joined an awesome boot camp early in the mornings, and saw my running times improve. I told myself everything was coming back; everything was getting better. With each new gain in health, I celebrated, reminding myself I was coming back.

And so it was that I went to my second or third day of radiotherapy and sat next to Susan, a woman in my CA support group, who was totally bald – hatless and scarfless, going about her business. I looked at her and thought, “Why am I so self-conscious about my head when here she is, walking around bald without thinking twice?” I realized I was being ridiculous, and decided right then to spend the weekend easing myself into a hat-free life.

Sure, when we went to Sweet Tomatoes, a lot of little kids gawked. My friend’s daughter, Molly, more than made up for it. When they came in, she ran up to me, surprised and smiling, and shouted, “April!!” wrapping me in the best kid’s hug ever. It was like I was finally letting her see me, without the hat, without the eyeliner, and she was happy as only a four year-old can be. I said, “Do you like my hair?” and she nodded, smiling shyly. Two days later, I was at work, equally shy and still nervous about my monk-like hairdo, discussing my comfort level with a hatless existence, when my supervisor (who rides for Team In Training) said, “You look adorable. It’s a celebration of life!”

A celebration of life. Indeed. :)

Missing My Father

Friday, July 3, 2009

Reading an excerpt from Bliss Broyard’s book, One Drop, I suddenly tear up. The book is about her father, literary critic Anatole Broyard, who, on his deathbed, confessed his greatest secret: he was part black. My own father was Filipino, and reading about Anatole watching Bliss’ brother run a 5K, I suddenly felt sad, wishing he was still here with me.

In the book excerpt, Bliss says that her father once wrote, of the “critically ill, ‘it may not be dying we fear so much, but the diminished self.’ He reasoned that by developing a style for their illness, a stance that incorporated it into the ongoing narrative of their lives, sick people could ‘go on being themselves, perhaps even more so than before.’

Is that what I am trying to do, by repeating a challenge I met five years ago? Recapture a me I used to be, that, it feels like, cancer has tried to “diminish”? Perhaps… perhaps my 40-by-40 is a kind of reincarnation, this effort, this journey I am embarking on. I am also willing to explore the idea that it may be this exact effort that heals my illness, moreso even than the drugs I’ve been given. Medicine comes in all forms.

My father was a runner. He ran every day, rain or shine, and when I was 12 and got a D in Pre-Algebra, he sat me down at the kitchen table and said, “Do you want to work at McDonald’s?” I shook my head, holding back tears (oh! the wrath of a disappointed father!). “I mean,” he said, “I don’t mind you working at McDonald’s; it’s an honest job, but at 18, you are out of my house, and it’s hard to pay the rent on minimum wage.” I told him I didn’t want to work at McDonald’s. “Okay then. Go upstairs and get your sneakers on. You’re coming running with me.” I was suddenly confused. “What?” He stood up, looking down at me. “You need some discipline, so you are coming running with me until these grades get back up.”

At 12, you are still in that vague area of adolescence where you do what your parents say. At least, that’s the way it was when I was 12. In the 80s. So I put on my sneakers, and I ran with my dad. Every day, rain or shine, until I was 16 and, of course, occupied with Drama Club and Track and various other afterschool distractions. I never ran with my father again, sadly. I Rollerbladed with him once, but his pace was much, much faster by the time I was in college, so I always ran on my own after that. Later, he took up cycling, but he died of runner’s heart, ironically, when I was 21 and about to graduate. I think now, he would have gotten into triathlons eventually (he was a swimmer in the Army), and probably surprised himself.

It’s not the present that I think we miss when we lose someone we love, but the future – the future they were supposed to be a part of. I miss my father most, not when I look at old pictures, but when I think of something I wish he could be there to see: my first solo marathon, my wedding, my first child. I’ll miss him at every one of my 40 finish lines, I know, because without him, I think, I would not even be a runner.

My favorite quote from the excerpt? “[A] person’s identity [is] an act of will and style.” I totally agree. :)

 

My 40-By-40 List

Friday, June 26, 2009

Cancer, like any threat to one’s survival, can really mind-screw you. When you’re diagnosed, you might find yourself thinking that life after treatment will never be as sweet as it could be, or that there will be things in your life that are suddenly unreachable or unimaginable, just because you’ve had cancer.

I’m here to tell you, that is simply not true.

When I was 27 years old, I did my first triathlon and first marathon in the same year. All my friends were turning 30, bemoaning the end of their 20s, and, what they thought, were the “best years” of their lives. Looking ahead to my own 30th birthday, I decided I wasn’t going to hit 30 like that. I decided to do 28 more athletic events over the next two years, committing to “30-by-30”. I finished 7 triathlons, 3 bike rides, numerous 5Ks and 10Ks, and 3 Providian Relays. My 30th birthday ROCKED, because I was celebrating life every minute up to it!

One of the the lowest points in my battle with cancer was when I Googled “5-year Survival Rates for Stage 3 Breast Cancer.” The number came back: 67%. I have a 67% chance of being alive by my 40th birthday, I thought to myself.

With one number, cancer tried to take my hope for the future away. With another, I’m trying to take it back. That number? 40. How many women do you know who are looking forward to their 40th birthday? Count me among them.

For most breast cancer survivors, if you can make it to the 5-year survival mark, your long-term survival odds increase significantly. So I’m going to make these next 5 years count with another goal: 40-by-40. Part “bucket list,” part personal challenge (and, part Fear Factor), my 40-by-40 is a celebration of who I am, what drives me, and what I have to live for.

I’m not going to let cancer take away my hope for the future.

Are you with me?

Here’s the list:

1. Do a Susan G. Komen Walk
2. Do an Avon Walk
3. Do the Mt. Tam Peak Hike
4. Run the NYC Marathon
5. Do the Napa Tri with Kristy Seltzer
6. Do an Olympic triathlon with Misha McPherson
7. Run the Disney Princess Half Marathon at WDW
8. Climb Mt. Kilimanjaro
9. Innertube the Russian River
10. Take a Road Trip across the USA
11. Go Skydiving with Ian Fuller
12. See an Oprah show with Loren Madden
13. Go on a Chocolate Tour of Paris with Anne Barrow
14. Go to Graceland on my birthday (I have Elvis’ birthday)
15. Swim with my friend Ian’s dolphins (he is a dolphin trainer)
16. Go to an Oktoberfest Celebration
17. Bring my goddaughter out to where I live for a visit
18. Learn how to figure skate
19. Kayak a river with First Descents
20. Go to a concert at Red Rocks Amphitheater
21. Build a Rube Goldberg machine
22. Rock-climb in Moab, Utah
23. Visit 20 breweries in Colorado
24. Ski in Vail with my sister
25. Live in Boulder, Colorado
26. Have a job where I can ride my bike to work
27. Have my own place again
28. Go all out for Halloween
29. Sell my house in Kaua’i
30. Go back to Kaua’i to empty out my storage unit
31. Perfect my chocolate chip cookie recipe
32. Reconnect with Katie Birkholz
33. Play on a community sports team
34. Host a monthly movie night with a theme
35. Have an amazing 40th birthday party
36. Make it to 5 years cancer-free
37. Go to Tamika Felder’s wedding
38. Speak at a survivor conference
39. Get a great job with awesome benefits
40. Write & publish a book