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.

My Sister, aka General Patton

Monday, May 25, 2009

I often say that my sister “is not a nurturer.” If you need warm and fuzzy, Rachel is probably not your gal. In fact, I once went to her in need of comfort and had her say, rather helplessly, “I don’t know what you want me to do.”

Where Rachel excels, though, is getting things done. If Cameron Diaz and General Patton had a child, it would be my sister – full of boundless energy, huge grins, and ruthless, take-no-prisoners self-determination. This is why, inevitably, my “she’s not a nurturer” statement is quickly followed by, “but if we ever go to war, I want her in charge!”

Faced with prepping my dream house for sale – the house I thought I would get married in, raise my children in, and grow old in – I was immobilized. I had just started Adriamycin and Cytoxan – two of the least fun chemo drugs – and my heart was breaking watching my dreams sink to the bottom of the Pacific. My realtor told me I needed to “de-clutter” the house as soon as possible, and all I could see when I looked around were the hundreds of dollars I had spent shipping hundreds of dollars of knick-knacks that would inevitably end up on a garage sale table, at the local Salvation Army, or packed in bubble wrap for storage until I could afford to ship them back to the mainland. I was overwhelmed with grief, and didn’t know how I was going to do it all.

Thankfully, Patton arrived, and with her, order and comfort. Not the comfort we want when we’re wounded – the Florence Nightingale-ish, soothing kind of comfort – but the structured, decisive comfort that is the other side of mothering. My sister took charge, “Rachel-izing” the house in barely a day, saving me the heartache of de-cluttering it myself. It was the first time, or maybe just the most significant time, that she was able to do something for me, and I was able to appreciate what she did. It sounds so simple, but how many times do people with different definitions of “support” find themselves unfulfilled? Had I insisted that the only way she could make me feel better was the way I made others feel better, I would have missed out on the gift she gave me.

We forget, when we’re sick, that caregivers often feel just as helpless as we do in the face of illness. They are not (usually) doctors or nurses, and can only watch lamely while someone they love suffers. I am reminded of rescue dogs after 9/11, who kept finding body after body, growing more and more discouraged, until officers planted faux “victims” in the rubble for them to find, to keep their spirits up. My sister was listless and depressed watching me go through chemo until I asked her to please do this one thing for me because I can’t do it without your help. I literally threw her a bone, and it allowed her to feel empowered in the face of my cancer.

When someone loves you, and sees you in a weakened state, all they want to do is help you feel strong again. Never getting the chance to help can be discouraging and depressing for a caregiver. Even if you have to muster up the last of the strength you have, find a way that someone who wants to help you can.

The most wonderful thing my sister has ever done for me (and, truth be told, she is a very loving sister who has done lots of wonderful things for me) was to throw me a surprise Welcome Home party after I moved back from Kaua’i. For a week, she had been all over me about keeping the house clean, and my friend Anne had come up to visit another friend further north. I hadn’t seen many people since coming home, as I was self-conscious about my appearance, my unemployment, and my lack of confidence in my future. Who wants to have lunch with a bald, broke girl who surfs the Internet all day? Turns out, a lot of people. Rachel’s friend Pynkee had suggested a surprise party to welcome me home, and my sister, in true Patton fashion, mounted a covert op with military precision. She contacted my friends through my Facebook account and old Evites, and even hid the party food at a friend’s house up the street! When Anne and I came back from breakfast, I was welcomed by dozens of friends and family members, some of whom I hadn’t seen in a year, others who drove an hour or more just to be there and show they cared. At a time when I felt so alone and in need of comfort, it was my sister – General Patton – who called in the troops for me, and made me feel supported and loved.

Everyone has a role to play in your journey to healing. Remember that not everyone is capable of giving in the same way (some people offer shoulders to cry on; others make Bundt cakes), and many may not feel comfortable giving without your permission. We’re not all psychic either, so if you notice a friend acting like a depressed rescue dog in your presence, find one way that they can be of service to you during your time of need, even if it’s picking up your mail or bringing you a Starbucks. Don’t dismiss your needs (and yourself) because you “don’t want to be a burden” to others – those “others” may be waiting for an opportunity to lighten your load, if only you’d let them! Giving someone a way to help makes them feel less helpless in the face of your struggles.

And, most importantly, if someone you love says, “I don’t know what you want me to do,” cut them a little slack, or better yet, throw them a bone. Not everyone can be Florence Nightingale. Sometimes, you don’t know you need a Patton until you ask.

 

How to Get Through Chemo

Wednesday, May 20, 2009

I was going to title this post, “How to Beat Cancer,” but, I think that’s premature, considering I’m not 5 years out yet. Still, time will tell if the same strategy applies. What I know now is How to Get Through Chemo.

Chemotherapy is no picnic. It’s hard enough, as a woman, to lose your breasts, and if chemo takes your hair, your eyebrows, and eyelashes, it’s even harder. When you look in the mirror, you don’t even recognize yourself – on a good day, you’re an extra from I Am Legend. On a bad day, you’re Uncle Fester. Or maybe it’s vice-versa. Either way, you feel like a freakshow, and all you want to do is stay home and curl into a fetal position.

There is another factor, of course. Many women facing breast cancer are (like me) real “Type-As.” We are the driven, strong ones everyone else relies on, and the worst part of getting sick is entertaining the idea that we might (gasp!) be mortal. It’s hard enough facing the fact ourselves, but letting our friends in on the secret?! Or worse, our family?! Unthinkable!!

The worst thing you can do after a breast cancer diagnosis is hole up. I mean it: YOU MUST NOT RETREAT. It’s so so SO tempting to batten down the hatches and hide away until your hair grows back, to turn down requests to accompany you to chemo because you don’t want people to see you vulnerable. It’s the WORST thing you can do and you will have a terribly hard time Getting Through Chemo alone.

I’ve been where you are. I’ve made it through the deaths of two parents and four grandparents, two financial crises, seven triathlons, three careers, two marathons, a graduate degree and nursing my only sibling through a horrible divorce ALONE. I have carried burden after burden all by myself; I pride myself on being able to pull my own weight in any situation and when I was diagnosed with Stage IIIA Triple Negative Breast Cancer 3500 miles away from all my family and most of my friends, I told myself, “I can get through ANYTHING all by myself, and cancer is no different.”

I’m here to tell you: I was WRONG, and I am incredibly lucky I wasn’t dead wrong.

Cancer is NOT the time to bravely soldier on alone. Three days after my second Taxol treatment, after four very tough cycles of Adriamycin and Cytoxan, I was hit with the worst depression I’ve ever experienced in my life. I found myself crying hysterically at the foot of my bed, wanting to wash the last of the Vicodin from my lumpectomy surgery with the last of the tequila in my freezer. I felt so helpless and hopeless, I wanted to walk into the woods behind my house, curl up into a ball, and never wake up.

I credit three people with saving my life that weekend: my roommate, a fellow survivor, and one of my chemo nurses. My roommate sensed something was wrong when I woke up the next morning, and asked me to stop by her office before my chemo appointment that afternoon. When I got there, she introduced me to her coworker, who was a ten-year survivor of Stage IV breast cancer. I burst into tears when I met her, and told her I was terrified of the thoughts I had been having. She told me that she’d battled with depression during her chemo also, then looked me straight in the eye and said, dead serious, “You have to call in the troops.” I went to chemo and, instead of putting a brave face on for my nurses, I let myself cry in front of them, and confessed I wasn’t having a good day. For someone like me, who was always cracking jokes and making people laugh in Infusion Services, it was a huge admission. Chemo nurses, of course, are a special breed, and one of my nurses offered to do a healing touch therapy on me while I was receiving my meds (something they probably don’t teach at medical assistant schools). I took her up on it and when I woke up after treatment, I felt like a weight had been lifted from my shoulders.

I’ll never know if it was my roommate reaching out to me, her coworker giving me permission to ask for help, or my reaching out to my chemo nurses that lightened the load I was carrying. What I do know is this: when you feel like “turtling”; when you want to hide from your friends and family, rather than face them in a weakened, vulnerable state, you must do the OPPOSITE: you must REACH OUT. Let them be the source of strength they want to be for you!

In my moments of darkness, I asked the same question Jesus asked on the Cross: “My God, my God, why have you forsaken me?” I felt so alone, so far away from what was supposed to be the Source of my strength at my lowest point. What I didn’t know was that He had surrounded me with angels to be there for me in His place. God loves us through other people. We just have to be open and receptive of that love. All around me were people waiting for the opportunity to be my rocks of Gibraltar, and if I had kept on insisting I didn’t need anyone’s help, I might have thrown myself into that pit of despair, for fear of appearing weak! Don’t do it. Don’t worry so much about appearing strong that you break from the pressure. People all around you love you no matter what, and are waiting to be there for you, if you let them. Call in the troops. You won’t win the battle without them.

This is How You Get Through Chemo: by Opening Up, not Holing Up.

 

If you doubt the power of strength, power, and beauty in numbers, check out this video: Playing For Change.

Survival and Sustainability

Monday, May 18, 2009

It was in my oncologist’s office that I realized the connection between breast cancer and sustainable enterprise. As an unemployed GreenMBA diagnosed with Stage III Invasive Ductal Carcinoma, I had understandably bigger fish to fry: my house was a month away from foreclosure; I had just gotten a $27,000 bill from the hospital that did my lumpectomy, and it had only been two weeks since I moved my life 3,000 miles back home to California. The truth is, it was a miracle that I’d even found an oncologist who took my insurance and was accepting new patients. I wasn’t exactly looking for life-changing truths.

“With triple negative cases like yours,” Dr. Kuan was saying, “I like to recommend clinical trials, because there isn’t a drug you can take after chemo and radiation….” I looked at her blankly. “To keep your cancer from coming back,” she clarified. To keep it from coming back? It had never even occurred to me that my cancer could come back. I’d had two surgeries to cut it out; I was dumping petrochemicals into my body (despite my green values) so that any remaining cells were destroyed. When chemo was over, I was shooting radioactive isotopes into my chest. Why on earth would my cancer come back? For the first time since my diagnosis, I realized I should be doing everything I possibly can to survive. If not, I was in danger of only surviving this round.

Walking out of her office, it hit me that businesses can think the same way when faced with a crisis resulting from unsustainable practices. A carpet company realizes that everything it produces is made from a finite resource that is running out. A public utility is faced with the impossible expense of building a new power plant because of needs that only exist for two hours a day. Suddenly, something that has been working fine for years and years faces a challenge that threatens to undo it completely.

Most companies’ first instinct is the same as mine was: let’s just get through this. Let’s just solve this problem, recover, and get back on track. What no one ever asks is, could the track we’re on be what led us straight to this crisis? It never occurs to most businesses that the crisis isn’t an accident at all; that it is the inevitable progression of their operational systems and priorities. We focus on just fixing the problem, and five years later, we are in a different crisis, with another fire to put out.

I spoke with a woman a few days after seeing my doctor whose best friend was fighting the same cancer I had. It had spread to her friend’s bones, then her liver, then her brain, and she was looking for an oncologist who specialized in liver cancer. The woman was distraught at the thought of someone so close to her having months to live. “I’m just trying to do everything I can to help her,” she said, and I asked if her friend had thought of changing her diet. “We can’t even get her to stop smoking!” she said. I thought, but didn’t say, then I’m sorry to be the one to tell you this, but your friend wants to die.

What fighting cancer and operating a business sustainably have in common is that both endeavors are about ensuring longevity. And to ensure longevity, you have to do certain things: you have to be designed right from the beginning, you have to have a foundation of support, you have to have a sense of purpose, and you have to focus your attention on the longview.

Being designed right isn’t always within your control, unfortunately. As humans, we are susceptible to our genetic makeup; we may be predisposed to cancer, or heart disease, or alcoholism. What’s important to remember is, we can still make smart choices. We can defy our odds. When you take over or inherit a business, it may have a design flaw, but if you can’t start from scratch, you can at least do your best to work around it. People born without sight or hearing learn to live without eyes or ears; soldiers who lose legs learn to walk without feet. They may not function as perfectly as someone blessed with ideal genes, but they may have enough resilience and persistence to outlive them. Even well-designed businesses can fall prey to employee theft or an owner’s ridiculously inflated ego. The lesson is, if the odds are against you, recognize your handicaps and don’t be defined or limited by them. If the odds are in your favor, don’t be undone by avoidable mistakes.

Take a lesson from Mother Nature: having an unshakeable foundation enables you to bend and not break in a storm. If your business can be destroyed by a three month recession or one bad customer, it won’t last 50 years. If your physical health can be destroyed by a broken leg, or your mental health by a miscarriage, you won’t last 50 years either. It’s not to say that change isn’t challenging or painful. Adapting to change is not easy – and businesses and species have gone extinct trying – but if you want to survive, you must not only adapt, you must reach out. Don’t take every hard knock on by yourself. Many individuals and business owners confuse resilience with adaptability; in fact, adaptability can mean changing direction every time the wind blows a different way. Resilience, on the other hand, means being able to stand your ground no matter which way the wind blows, and that comes from having strong roots in the form of a solid base of friends, family members, coworkers and customers to support you through those big storms. People need people. If you want to make it past the curveballs life throws your way, build a web of roots around you so you can call in the troops and regain your footing.

I’ve always believed that a sense of purpose can only develop from a life of service. Feeling needed and valued gives you a reason to stick around, and when a business serves a purpose in a community, its customers need and value it as well. It sounds dreary, but as long as there are deaths and taxes, mortuaries and accountants will always have job security! So take a lesson from businesses and people that have seen the fly-by-nighters come and go. Longevity belongs to those who are fixtures in a community they serve. When you see yourself as an integral, invaluable contributor to a cause, you have a reason to fight for your life, because you’re not just living for you.

Lastly, if you want to make it through a crisis and still be around when other businesses are failing or other people with your prognosis are dying, you need to take the longview. I’m not saying, “Don’t listen to economists or doctors!” On the contrary, take any information under consideration, but more importantly, consider what you need to do to stick around. We often get forecasting wrong, investing our efforts in daydreams of a “future self” that is thinner, richer, or more successful than our present self, without actually outlining a plan and taking action to get there. Instead, we eat junk and overspend, putting off the day when we’ll finally take care of ourselves or finally take care of our business. Even now, with scientists all over the planet agreeing that we are running out of oil, people are still driving gas-guzzling cars on 2-hour commutes. We’re building hybrid cars, but the dashboards and headlamps are still made of plastic! Because most people in the working world are 30-50 years old, it’s understandable that we tend to only think 20 or 30 years ahead, but we have to be thinking much, much farther into the future. Seven generations ahead, if you take the Iroquois Nation’s advice.

Had I been thinking, from birth, about living as long as I possibly could, I would have never developed a sweet tooth; I would have exercised regularly and managed stress better, reduced my exposure to toxics and gotten regular checkups. If we ran our businesses (and our planet) looking seven generations ahead, there would not be a gigantic trash dump floating in the Pacific Ocean. NASA would not even be entertaining the idea of colonizing Mars (seriously, why is no one talking about the amount of steel and oil we would have to dig out of our already resource-stripped planet to accomplish such a goal? Not to mention the megatons of toxic construction waste that would be produced by such an endeavor?!). We are acting as if we just have to get through this generation alive. We are not doing everything we possibly can to ensure the survival of our species. We’re like a breast cancer patient who wants to beat cancer, but refuses to give up her cigarettes.

Before I met with my new oncologist, I would indulge in root beer floats to cheer myself up after chemo. Organic root beer sweetened with cane sugar, non-RBGH-containing, all natural vanilla ice cream. I would finish a bottle of root beer and a pint of ice cream over maybe a week, flooding my bloodstream the kind of food that cancer cells love, immediately after dumping petrochemicals into my body to kill them. Within a week of realizing the futility (and irony) of this “feel-good” indulgence, I radically changed my diet and immediately set a five year goal for my fortieth birthday, five years being the benchmark for remission. If I can be cancer-free in five years, my long-term survival odds go up radically. In short, if I live to 40, I have a better chance of living to 80. Where other diets have failed, this one has succeeded, because I am no longer fighting to make it through this quarter, through this year, or even through the next five years. I am fighting so that I can be around for the rest of my life, for years I can’t even imagine yet, because I want to do everything I can to make sure I get the chance to live them.

There is great value in investing in our longevity, and a terrible price to pay for instant gratification. Maybe, if we start taking care of our businesses and our planet and our bodies like we want them around forever, and not just for the next 10 or 20 or even 100 years, we might actually achieve true sustainability.