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The Big Bang

Aug 18, 2014 40-by-40, Cancer, Faith + Scripture, Front Page, Pre-Recovery Leave a Comment

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

Aug 18, 2014 Cancer, Front Page, Keeping Your Chin Up, Pre-Recovery, Vanity , Leave a Comment

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

Aug 18, 2014 40-by-40, Cancer, Family, Pre-Recovery Leave a Comment

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

Aug 18, 2014 40-by-40, Keeping Your Chin Up, Pre-Recovery Leave a Comment

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

Aug 17, 2014 Cancer, Pre-Recovery, Staying Fit Leave a Comment

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

Aug 17, 2014 Cancer, Caregivers, Family, New, Pre-Recovery Leave a Comment

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

Aug 17, 2014 Cancer, Faith + Scripture, Keeping Your Chin Up, Pre-Recovery , , , Leave a Comment

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

Aug 17, 2014 Cancer, Caregivers, Family, Pre-Recovery , , , Leave a Comment

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

Aug 17, 2014 Cancer, Faith + Scripture, Keeping Your Chin Up, Pre-Recovery , , , Leave a Comment

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.

The Case For White-Knuckling It

Aug 17, 2014 Faith + Scripture, Keeping Your Chin Up, Pre-Recovery , Leave a Comment

Tuesday, May 19, 2009

I realized today that sometimes, you just have to white-knuckle it.

I have a few interns graduating from high school in Richmond, CA. If you’re not familiar with Richmond, it’s a very tough place to grow up. Seated right next to Chevron’s biggest petroleum refinery west of the Mississippi, it’s full of toxic chemicals. The parks are run down and while there is change coming to the City, it wasn’t changing much when many of my students were growing up. Sometimes, I think it’s a miracle they’ve made it this far in one piece, with their sanity intact.

I went down to a local JC today to sort out a clerical error for one of my kids – someone used his ID number to register, then drop out of a class. They say he owes them $21 for a on-unit course, and he can’t register for classes at a sister JC closer to home until it’s paid. I mean, this kid doesn’t have $8 for the BART to come out here to fix it, let alone $21 to pay it. He’s saving every dime so he can get his first apartment, and being a young African-American man from Richmond, even one with a great resume, he’s having trouble finding a job in this economy. He asked me, frustrated beyond belief, why everything has to be so hard. Ah, kid, I wanted to say, I am so not the one to ask right now.

The reason is this: I’d just realized I had done the math wrong this month, and I have three chemo sessions left, not two. Then, my doctor told me that the thing on my tailbone I thought was a staph infection from my gym’s nasty locker room was actually shingles. Which is also why the headaches I’ve been getting are not going away no matter how much water I drink. The best part is, I can’t take anything but over-the-counter pain medication, because I have to drive myself to the doctor four times a week for shots, bloodwork, and chemo.

If you’ve ever put pressure on a shingles-inflamed nerve, it’s not pleasant. Not at all. Which is why I am wincing when Marlon asks me why everything has to be so hard, I know how he feels. I know the feeling that it’s just not going to get any easier anytime soon. In those times, I now realize, you just have to white-knuckle It. You just have to get through it, because no amount of vision-boarding or Madonna-album-listening, or positive-affirmation-ing is going to make the pain and frustration go away.

The worst pain I’ve ever been in was the week I had my gallbladder taken out. I didn’t even have a gallstone; I had like “gall-sludge” – a slimy, grainy-textured, tar-sand-like substance clogging my bile duct. The pain was excruciating; I was out of my mind from the second I walked into the hospital to the moment the morphine took effect. It felt like an alien made of boulders was trying to claw its way out of my chest and I was literally watching the second hand on the clock, thinking two more minutes and the nurse will be here, thirty more seconds and she’ll find a vein, five more seconds and it will be in my bloodstream, knowing that as soon as my body metabolized it, the pain would abate.

Knowing there will be an end to pain makes it so much easier to get through, of course. It’s thinking that life is going to be hard forever that makes you want it over. In the Book of Job, the Devil says to God, “You know, even your best followers only follow you because their lives are blessed. If you took away everything they had, they wouldn’t be so penitent.” So God says, “Okay, fine – there’s Job – go to town. Take away anything you want from him.” And Job loses everything – his kids, his business, his house, all of it. Still, Job believes in God and doesn’t question Him. Finally, Job’s friends are like, “Dude, you are not perfect, but still, how can you deserve this? You need to take it up with God, you need to ask Him what you’ve done to be so punished.” God, hearing Job’s friends question His judgement, interrupts them and says, “Who is this that darkeneth counsel by words without knowledge?” (which would be Hebrew for “Who are YOU to question ME?”)

Theologians typically suggest that the central question of the book of Job is, “Is misfortune always divine punishment?” and in my opinion, the Book of Job says no. We’re not at the mercy of a capricious God, and we’re not always bearing the burden of His wrath. In times of misfortune, I take comfort in the Book of Jeremiah, where God says He has a plan for me. I may not know what it is; it may be confusing sometimes. I may feel like the Karate-fucking-Kid, waxing on and waxing off and painting houses all day while He’s out fishing! But I have to trust that it’s all part of His plan, and that, like Job, faith and trust are rewarded. Even if you want to get all existential and say the only reward for faith in a Higher Power is feeling like misery isn’t pointless…. sometimes, that can be enough to make you want to go on living.

So many times in my life, I have been able to use past disasters to put things in perspective, either for myself or for others. Time and again, I have made it through hard times to enjoy an abundant and happy life. We never know what God has planned for us; we can only take comfort in what is, and pray for strength, patience, and understanding if it isn’t what we want. I told Marlon, when he asked me why life has to be so hard, that sometimes it’s hard, and sometimes it’s easy, and the only thing we can control is our reaction to it. When you don’t think you have the strength to bear a burden, and none of your positive thinking is helping, the answer is to hold on, let the tears fall, and white-knuckle it ’till it’s over.