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┬ásuggested, 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┬áteaches 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. :)

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.