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

 

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

The Top 3 Things Cancer Patients Can’t Stand Hearing From Their Loved Ones

Wednesday, June 24, 2009

Attention all caregivers! Please read on if you *really* want to be there for someone you love who’s fighting cancer.

The Top 3 Things Cancer Patients Can’t Stand Hearing From Their Loved Ones

1. That we somehow caused our cancer. This includes reminding us of “bad” habits that we have or haven’t given up, or implying, via “The Secret” mythology, that we somehow attracted it, or, via something like Catholicism, that cancer is some kind of punishment for our sins.

2. That there is more we can be doing to fight our cancer. Once you have gone through surgery, chemo, hair loss, and radiation, then you can gauge your threshold for dealing and suggest something more we can do. On second thought, don’t even bother then. We don’t want to hear it.

3. What we should do post-treatment to keep our cancer from coming back. Please don’t tell us how to keep our cancer from coming back. Tell the American Medical Association, or the National Institutes of Health, or the Centers For Disease Control. Rest assured, they’re dying to know so they can monetize your miracle advice.

Why do people we love tell us these things? Because they love us, and they can’t bear the thought of losing us. That, and they really do think, perhaps because they’re not the one with a chest port, that we can have some measure of control over our cancer. Or, rather, that they can have some measure of control over our cancer.

Try as we might to convince ourselves that life is predictable and logical, the fact is, we live in a world of complete uncertainty. As such, our first response to the unexpected is to seek out logical, rational conclusions based in causality. Why? Because we need to believe that things happen for a reason, and if we reduce cancer to an effect with a cause, then, in a twisted way, it gives us the illusion of having power over it. If I caused my cancer, then I can cure it! Even better, not only can I cure it; I can keep it from coming back! See how that works?

This is the height of insanity, and trying to convince someone fighting cancer of it, while it might give you comfort, is a backhanded compliment at best, and a hurtful insult at worst. Most people with cancer have already struggled with staying positive in the face of relentless unpredictability. Give them some credit for STILL BEING ALIVE and stop sharing your opinion on how they can manage, survive, or prevent their disease better.

The Happiness Lock

Tuesday, June 2, 2009

So, my hair is growing in. Actually, it’s *been* growing in. I’m still not comfortable walking around without a hat (and yet, I put videos on YouTube of me without one, interesting….). Still, it reminds me that my body is recovering.

My body is recovering. How powerful a statement is that? Lately, I have gotten in the habit of wording things in the present tense. Not “My body will get better” or “I am going to heal,” but “My body IS recovering.” Right now, right this very second – with every hair cell that pushes its way out of my scalp! For all his talk about ditching minimum-wage activities and hundred-thousand dollar watches, I think what all these MLM seminar leaders are really teaching, beneath the how-to-be-a-millionaire smoke and mirrors, is that the language you use, the words you speak, are of critical importance to your success in any endeavor. Are you someone who says, “As soon as I ____, things will be better…”? What statements like this do is put your brain in a permanent state of anticipation, not a permanenet state of action. You are contstantly anticipating the day when things in your life will get better, but they never get better, because you are never taking action!

Have you ever heard the expression that in our dreams, we are the writers, directors, and actors? I have a better metaphor – our lives are courtrooms, and we are the defendant, the plaintiff, the judge, jury, and attorneys. Every moment of our lives, we are making the case for beliefs that we uphold. We look for evidence, and deem it relevant or irrelevant depending on those beliefs. Do you think marriage is an outdated, sexist institution? Then you will seek out evidence of it and IGNORE evidence to the contrary, just to uphold your belief. Even when the knife has fingerprints from the defendant and the victim’s blood all over it, you will say, “Illegal Search! This Evidence Is Inadmissible!” You will look at someone in a happy, giving, joyful marriage, and say that they are an exception, a fluke, or a lie, just to maintain your belief.

One of my favorite quotes is, “Reality is created by Validation.” We make choices every day about where that validation comes from, and we accept or reject the validation based on our evaluation of the evidence presented (which is, of course, accepted or rejected based on our beliefs). If we believe we are bad people (based on what we deem “credible” evidence, like, say, an abusive spouse’s opinion), we might also then believe that God gave us cancer to punish us. A sane person would tell us, “That’s ridiculous!” If we believed we deserved it, though, and believed it with enough fervor, we would dismiss our well-meaning friend’s opinion as uninformed. “You just don’t know how bad I am,” we would say to ourselves. “I do deserve this, and that’s why I have it.”

When bad things happen to good people, it’s easy to blame God, but it’s even easier to blame ourselves. Why? Because it gives us the illusion of control. If you got this because you’re bad, then you can get rid of it by being good. Right? So, basically, you think you can manipulate God’s will by changing your behavior? That’s kind of arrogant, isn’t it? Or is it ignorant? Maybe, shit just happens. Every day. And there’s nothing you can do but roll with the punches. That’s scary, though. It’s much more comforting to imagine we can control God by living a certain way, like happiness is some kind of combination lock we can figure out, isn’t it? That’s not the way it works, though. The sooner we accept that, the easier it gets to swerve when life throws you a curve.

Some of you might disagree, so here’s the evidence, and it’s undisputable: bad things happen to good people. All the time. You can be living a right and good and honest life and still get sick with a disease you don’t deserve. So what? How are you going to respond? Are you going to fight it? Are you going to yell at God? Get angry? Sit around and have a pity party? Good luck. I can’t think of an example where any of that’s actually worked for anyone or made their life happier.

The only thing that works is this: get busy living your life. Stop crying and feeling sorry for yourself – that’s just selfishness and it does no one any good, especially you. Believe with all your heart that you deserve all the happiness and goodness and abundance in the universe, and get out of that darkness so you can get busy living the life you DO deserve (and who says that you can’t be fighting cancer AND be happy?!) Then, look back and create a road map of your journey, so you can help others find their way out. There are a millions ways to get to a happy life. Find yours, then share it.