Barbara Ehrenreich and Positive Thinking

Wednesday, April 14, 2010

I wanted to share this interview with Jon Stewart and Barbara Ehrenreich, whose new book “Bright-Sided” discusses the dark side of positive thinking: http://www.thedailyshow.com/watch/wed-october-14-2009/barbara-ehrenreich

Many times, when you are coping with an unexpected disappointment or particularly challenging time in your life (like cancer), people (even people you love) try to help you feel better by suggesting you just “think positive” and “don’t dwell on the negative.” I talk about this in Chapter Five of my book, Recipe For Lemonade.

I can’t tell you how annoying this is for someone going through cancer.

Now, there is a difference between a heartfelt, “It won’t always be like this; hang in there,” (which I love) and a somewhat self-righteous, The Secret/Law Of Attraction-motivated attitude that implies a person can bring misfortune on themselves deliberately through a combination of their thoughts and the science (or magic) of quantum physics.

I myself have been buoyed by hugs, e-mails with supportive, encouraging messages, and belly laughs brought on by joking coworkers. Whether these things have changed my white blood cell counts remains to be seen, but I do know that they have given me a reason to get up in the morning – something to keep living for – which is very motivating when you’re fighting for your life. To put it frankly, these things can be the difference between wanting to live and wanting to die. What they cannot do, however, is cure cancer.

We don’t want to believe this, of course. We want saving someone’s life to be as simple as the power of prayer. We don’t want to believe that sometimes, people die and there is nothing you can do to stop it. That’s a terrible world to live in, isn’t it? A world where someone you love, no matter how much you love them, or how much they love you, can be beaten by a lack of T-cells. And yet, this is the world we live in, and no amount of happy thoughts can change it. Why is it we can believe positive thinking can cure cancer, but it can’t cure AIDS? Why do scores of people bash chemotherapy when it has saved millions of lives? I know it’s not perfect, but it’s ALL WE’VE GOT. If you have a better solution, for God’s sake, get some medical training and go prove it at the Mayo Clinic, because we could certainly use an alternative. But don’t sit there when you haven’t had a doctor tell you that you could die if you don’t do what they say, and then suggest I meditate on rainbows to shrink my tumor.

When people I love tell me not to be so negative (i.e., realistic) about cancer and the ramifications of having had it, I wish that, for just a moment, they could be in my shoes. That, for just a moment, they could feel the fainting heart and nauseous stomach that comes with a cancer diagnosis. The sinking feeling that accompanies the realization that the life you thought lay before you – the one you were working towards, hanging in there for, and getting up in the morning for – has been utterly wiped out, like Nagasaki, in a split second. I wish they could know what it feels like to go through week after week of treatment – each chemo drip reaffirming the unavailability and inaccessibility of that future – and know how hard it is to keep getting up in the morning, despite your uncertainty about the future. But mostly, I wish they could feel the way I feel when someone suggests in the face of all this that staying positive can not only cure cancer, but keep it away. Are you fucking kidding me? I want to say. You do four rounds of AC and twelve rounds of Taxol and tell me how to stay positive when I look like Uncle Fester and my future looks like Hiroshima (circa 1946). It is taking everything I have in me just to keep waking up in the morning, I want to say.

Now, all that being said, there is a way to come out of cancer without hating your life and the people who have loved you through it.

The first thing you must do is recognize that there is a pro and a con to nearly everything. Sometimes, the only pro is, “this will not last forever,” and that is what you must hang onto if you want to make it to the other side of disaster. Sometimes, the cons build up so much that all you can do is curl up in a ball and cry. When this happens, cry. Cry, cry, cry. Cry till your eyes are swollen shut. Stay away from drugs, alcohol, and anything else that’s self-destructive, and curl up in bed until you fall asleep. When you wake up, that crappy day will be over and done and a new one will have started. When you get out of bed, on this new day, don’t think of it as one more crappy day to get through – think of it as one day closer to the end of a crappy week, a crappy month, a crappy year. It won’t stay crappy forever – sooner or later, things WILL get better. Your job is to make it to the end of the crap. Trust me, it will come.

Whenever the crap breaks, take a breath. Entertain the possibility that, even if this amazing life you were working so hard for and imagining every day is not to be, that there might be some alternate, happier (or just-as-happy) future available to you now. This is all you have to do – drive the wedge into your crap-centric thinking – to jump the track. Find the things in your life you can be content with, even happy about, and you will feel the crushing despair of impossibility lift, if only slightly.

This is the path to rebuilding optimism – not faking it till you make it, not pasting on a smile when you feel like giving up, but seeking out the reasons to keep living, keep hoping, keep dreaming. Giving yourself permission to imagine new happinesses and forgiving yourself for having a bad day, or a bad month, or a bad year. We only blame ourselves for misery because we don’t want to live in a world where anyone and anything can fall apart, at any time, for no good reason. We have to believe that people bring it on themselves, otherwise we’re all vulnerable. When someone tells you to “stay positive” instead of worrying about a recurrence, they’re either afraid of their own mortality, or grasping at straws because they don’t want to imagine a world without you. Chances are, they have no idea what you’re going through, so unless they’re being a pushy jerk, cut them some slack.

Especially if they bought you a pink bear.

Stuck In A Moment That You Can’t Get Out Of

Friday, December 4, 2009

Ever feel like you’re stuck in a moment you can’t get out of? Like, you keep going back to it and telling yourself, “Had I only done THIS,” or, “If only I HADN’T done THAT”? Do you harbor anger and resentment over that moment, or do you often find yourself blaming all the unhappy or unsatisfying things in your life on that ONE decision?

Throughout this last year, I have been taking notes.

Why? Two words: Joseph Campbell.

Campbell was a proponent of the Monomyth, also known as “The Hero’s Journey,” a literary structure he’s said shows up in nearly every story, whether it’s Gilgamesh or GlengarryGlenross. In an effort to navigate the stormy waters of trial and recovery, I’ve found myself turning to Campbell for guidance, seeking some kind of roadmap for my journey. Of particular importance to me is what Campbell calls the “boon” – the elixir of life, the Golden Fleece, the healing balm the Hero faces trial after trial to obtain and return to his (or her) home. I’ve wondered, time and again, “What is my boon?” I’m happy to say, I think I know now.

Many people have gone through what I’ve gone through. They might not have had cancer, or lost their business, or had to rebuild after a tragedy. Maybe they busted their knee in a homecoming game, dashing their hopes for a collegiate scholarship. Maybe they miscarried after a car accident, or married someone who didn’t turn out to be what they thought. It doesn’t matter; many of us have had to watch our dreams vanish, and imagined that with them, we’ve lost our ONE chance at happiness. Afterwards, we end up living a half-life, hating our reality while convincing ourselves that the life we ARE living “would be happier if only…” We hate ourselves for making the wrong decision, taking the wrong path, loving the wrong person. We beat ourselves up, for what? For not being psychic? It’s ridiculous, but people do it every day. I did it for months, imagining that, if I had my lump removed earlier, if I hadn’t bought a house in Hawaii, if I hadn’t started a business three months before the economy crashed… if, if, if. If wishes were horses, beggars would ride!

My boon is this: a way back to happiness after you think you’ve lost everything. A road map, to navigate the waters post-shipwreck. I put the beginnings of it here now, for all of you who have helped me make it to the Other Side of this.

1. Make a decision, today, to entertain the idea that happiness – YOUR happiness – can come in an alternate form than the kind you always imagined for yourself. Is it possible for you to find happiness without the things you’ve lost? Is it possible that there could be some other happiness in your future, that you can’t even imagine yet?

2. Forgive yourself for not being psychic. We can never know our futures, no matter how carefully we plan them. Trust me! And no amount of beating yourself up will change the time space continuum enough for you to go back and know then what you know now.

3. Because you’re probably already in the habit of comparing your life to everyone else’s, and, let’s face it, you probably don’t know what’s *really* going on in their lives (just as you can’t possibly know how fantastic or crappy this “alternate” life you’d be living, had your life gone a different way, would be), make a decision right now: if you’re going to compare yourself to other people, look to people LESS fortunate than you, as opposed to people MORE fortunate than you. It seems logical, but we get caught up in what we DON’T have (which 99% of advertising has conditioned us to think about, in order to drive consumerism), and we neglect to appreciate what we DO have. Comparing yourself to people who have more challenges than you have will cultivate within you the perspective of someone who is more fortunate than most. Cultivate this habit, and you will feel blessed instead of cursed.

4. Now that you are 1) open to the idea that your happiness can come in a way *different* from the ONE way you thought it could ONLY come in; 2) you’ve forgiven yourself for not being able to predict the future; and 3) you’re feeling a little more grateful for the life you DO have, make a decision to STOP telling yourself that your life cannot ever hold the happiness that some alternate, imagined reality (where you made different decisions) could. You simply don’t know that, and beating yourself up about what you think you’ve lost will only keep you from being open to happiness in THIS reality.

5. When you start worrying that you HAVE missed out on your one chance at happiness, and that you future couldn’t possibly hold anything as good as what you *could* have had, remind yourself, YOU’RE NOT THERE YET. And, you’re not psychic. So don’t get yourself worked up over a part of your life that hasn’t even happened yet, or a part of your life that might never have happened anyway.

6. Lastly, recognize that, no matter what mistakes you’ve made, we all do the best we can, with what we have at the time. Give yourself some credit. The only mistake you’ve made is believing that it’s no longer possible for you to find happiness. Happiness comes in all shapes, sizes, forms, and times, and we can never know when or how it will present itself. Only shutting ourselves off from joy, as some form of self-punishment for mistakes we think we’ve made, keeps us from finding it again.

And that’s what I’ve come to so far. ūüôā

 

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

 

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.

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. ūüôā

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. ūüôā

 

On the Run Again

Thursday, June 25, 2009

As (I hope) you know, many people diagnosed with cancer are not unhealthy, cigarette-smoking, fast-food-eating, non-gym-going laggards just waiting for a terminal disease to punish them for years of not taking care of themselves. Although a little overweight (every time I say that, I think, “Over WHAT weight?!), I considered myself pretty active at the time I was diagnosed. I went on Sierra Club hikes almost every weekend and ate pretty healthy (except for the occasional cinnamon knuckle or chocolate chip cookie). Once I got on Adriamycin and Cytoxan, though, that all went to hell.

AC, as it’s called, makes you nauseous for 3-5 days after treatment, and you’re so tired, you feel like you’ve been a) hit by a truck or b) running for two days. You’re so tired that even simple things can wipe you out, and by the time you get your appetite back, you’re so hungry you want to EAT a truck! To make matters worse, I was beset by indigestion so bad that at one point, everything I ate either made me want to throw up, or gave me heartburn (later, I found out it was my gallbladder). By the time I was done with AC, it was onto Taxol, which didn’t give me nausea, but brought with it neuropathy in my feet and its own share of tiredness.

Adriamycin has a risk of heart damage in patients treated with it, and I knew that the road back to healthy, especially after 6 months of being pretty sedentary, would be a long one. Anxious to get my healthy body back, and feeling stronger now that I could see the light at the end of the chemo tunnel, I started jogging again, halfway through Taxol. I made sure I cleared it with my doctor, of course, and began very, very slow – 3 minutes at 4 miles an hour, followed by one minute at 3 miles an hour, for about 30 minutes, on a treadmill. I remember the day I did two miles in 33 minutes – I was ecstatic! Never mind that I use to run a 5K in 33 minutes – two miles was a marathon to me, and I celebrated by telling myself, one step at a time, April.

Running has always been my favorite way to work out, second only to hiking. You don’t have to think too hard to do it; it’s not competitive, and the more you do it, the better you feel when you do! Just put one foot in front of the other, at a pace you’re comfortable at, until you’re done – that’s it! If you want to push yourself, you just pick up your pace or change your route. It’s so easy to measure your progress, too – you can work to improve how far you run or how fast you run – and at the end of the day, you only measure your success against your own performance. It’s the ultimate low-stress sport, mentally anyway.

I’ve met quite a few people, of course, who hate running – just HATE it. They say their knees are bad or their back is bad or they can’t stand being on a treadmill or working out so hard. I say, if you don’t like running, try walking or hiking. Find a nice path or loop in a safe part of your neighborhood and just go for a walk. Walking is a safe, easy way to work your way back to health after an illness. It will get you your Vitamin D for the day, a chance to breathe some fresh, clean air, and some time to just clear your head and enjoy the scenery. So often, we are either going-going-going at a breakneck speed, or crashed, still and motionless from exhaustion. Running and walking give you an opportunity to move through life at a more relaxed pace, which might put things in perspective for you.

More more info on Running and Walking, check these websites out:

Running: http://www.medicinenet.com/running/page2.htm#why

Walking: http://www.thewalkingsite.com/beginner.html