Pillow Front

Another good thing about having breast cancer is that people sometimes pamper you with a special gift. Last week, I got an amazing gift in the mail. It’s the cutest pillow in the world! It’s a handmade, custom designed quilted pillow with a Breast Cancer Awareness theme. But the theme is subtle. One thing that really bothered me last year during Breast Cancer Awareness Month was the ubiquity of the pink ribbon. I literally could not escape it. It was everywhere I turned and I had a hard time dealing with it because of my (then) new diagnosis. Even NFL football players were wearing hot pink. But one of the things I love about this pillow is that the pink ribbon theme is not in your face; you have to look for it. But it is there.

The quilter is a dear friend who lives in Connecticut. Our children grew up together. She is an amazing artist and designer who went through a horrible tragedy last year. Out of that tragedy comes her new business, Material Impressions. When I received the pillow, I just had to ask Alison a few questions because I knew others would want to know more about the pillow and about her.

Q: I love the Breast Cancer awareness pillow. How did that project come about? Why breast cancer?

Alison: I accepted an offer from a fabric vendor to buy precut fabric squares, the proceeds of which would go to Breast Cancer Research. I also had just learned at that time that a dear friend had been diagnosed with breast cancer and I wanted to do something for her…by buying the fabric, I could not only make her something, but also donate towards the cause with my purchase ;0)

Fabric details

Q: How did you pick the fabrics for the pillow? Where do you find them?

Alison: The top, is pieced from the precut fabrics noted above, plus some brown and pink fabric I found in my travels – wherever I happen to vacation or visit someone, I have to visit a local quilt shop! I found all the pink ribbon and brown and striped fabrics in this particular pillow version at a shop in Portsmouth, NH. The shop was doing their share for Breast Cancer awareness.

Q: How did you get your start sewing?

Alison: I started sewing when I was 9 or 10 years old – my Christmas wish that year was a sewing machine and I got it! The rest is history – though still in the making ;0)

Q: What kinds of things do you create at your sewing machine?

Alison: For years I made mostly clothing, for myself and then for my kids. I got into making quilts after having so much left over fabric from sewing for my kids…I bought a used Gloria Bonesteel Lap Quilting book and got hooked! I also make art quilts – to be hung on the wall as opposed to using as a bed covering – I continue to make these on commission or for my own home.

Q: Do you have a background in art or design? How does that influence your work?

Alison: I graduated with a BA in Art History and a minor in fne arts – Watercolor Painting was my focus for many years. I know that my sense of color and design in my fabric work all stems from that traning; I find the added sensory aspect of working with fabric to be especially enjoyable. Making quilts, pillows, clothing, etc.; also often mixes the need for something useful with my artistic expression – merging the utilitarian and the aesthetic.

Q: Do you have a favorite artist or designer whose work inspires you?

Pillow Back

Alison: There are so many fabric artists that inspire me! I love the saturating color use of Kaffe Fassett and the applique-as-painting of McKenna Ryan – both are well known in the quilt world – as far as fine artists: I am a John Singer Sargent fan from way back, the charm of that era (turn of the century and a little earlier) goes hand-n-hand with my love and appreciation of women’s domestic and fine arts – embroidery, quilt-making, needlepoint, etc., which seemed to have its heyday in that era.

Q: Can you share a little bit about your dreams and goals for Material Impressions? Why did you start it?

Alison: I started Material Impressions in memory of my husband, who died last year. He was my biggest fan when it came to the things I created, and he had plans to retire and start me in my own business. My goal is to satisfy my passion to create, while earning some income to help support myself, working out of my home to be close to my kids. One of my goals is to buy the materials I use (fabric, trinkets, etc.) from women who need to support themselves and/or better their situations, as well as from retailers that support causes such as cancer research. I also give 10% of what I make to a missions fund.

Q: Can you tell us a little bit about yourself and your family?

Alison: I was born in Chicago, have lived in California, England and now New England – have two wonderful kids; a son, Ryne 20 years old, a junior at Northeastern University in Boston; and my daughter Rachel, 16 and a junior in high school. We love the East Coast, it is beautiful here – especially this time of the year! I have a strong faith in God’s love for me and my family which has helped us to survive the sudden loss of my best friend, husband and my children’s father to heart failure last year. God teaches me everyday that life is a test and a trust; He smiles when I trust Him. “The Lord is pleased with those who worship Him and Trust his love” Psalm 147:11(CEV)

Q: How can people order one of the pillows?

Alison: I am in the process of setting up a website, but until then anyone interested in ordering can reach me at alisoneschultz@sbcglobal.net. The pillows are $40/each plus shipping and handling. I have three left in the style pictured; and one “quillow” version – a lap-size fleece blanket (in pink of course!) that folds into the quilted panel and becomes a pillow! That is $50, plus shipping and handling.

The fabric world is an ever-changing one and when they discontinue a fabric I have to change my inventory as well – a new style of PinkPillows for the Cause are coming soon – as well as a TouchofTealPillows for the Cause for ovarian cancer research.

Thanks, Alison. You are amazing! And, readers, if you have a friend or family member who is a breast cancer survivor, or currently going through it, you HAVE to send them The Cutest Pillow in the World. They will love it! (And who among us doesn’t need more pillows? At last count, I sleep on three.)

Do you have a 9-11 list? I do. It’s on a pink heart-shaped Post-it note on my computer monitor (in the photo below it’s the second heart from the left).

At the top of the note are three letters: 9-1-1. Then a list of 6 names. This simple note is something that helped me keep my sanity and my heart intact during the last nine months of navigating through breast cancer.

I got the idea when one of my dear friends said that I could call her any moment of any day, even in the middle of the night if I needed to. She had been through a really tough time when she was young and her husband was being treated for cancer. One night she was at the end of her rope and called a friend in the middle of the night to talk for a couple of hours. Her friend never complained and just sat on the phone with her and let her talk. A simple thing, really, but in a desperate moment it was a lifeline.

I’ve always been one of those kinds of people who hates to ask for help. I pretended I was strong and brave and sort of a lone cowgirl. But breast cancer knocked me down and stomped on me.

So when my friend told me to call her for any reason anytime I needed to, I created a 911 list and put her name on it. Then someone else said the same thing to me, so I added her name. I ended up with six names on my list. And I used it. I called or emailed each of the six at different times to ask for help, and they responded.

Sometimes when life squashes you, you need a pink piece of paper with some names on it. And when you can’t think of what else to do, you look at that paper that represents so much love, compassion, caring, and sacrifice that you can’t really even comprehend it, and you know that you are loved. You have help. And you’re going to make it.

Do you have a 911 list?

And even more important, is your name on someone’s 911 list?

Sprinkles says "You can put ME on your 911 list"

For most of my life I’ve observed tattoos with curiosity but never wanted one. I think I avoided the idea because when I was growing up, tattoos were mostly worn by Hells Angels leather dudes with big ol’ fat stinky motorcycles or ex-sailors who had faded and blurry bluish tattoos on their arms of pinup girls or Donald Duck. Church girls just didn’t get tattoos.

Plus, there were other issues. First, there’s the pain factor. Having a needle punched into my skin thousands of times? No thanks. Then there’s the permanence. Is there an image I love enough to wear it on my skin for the rest of my life?

And then there’s the blood. (When I worked for the Newhall Signal I interviewed a grizzled tattoo artist for an article he informed me that the tattooing process draws blood. Having grown up in the age of HIV and hepatitis, I say, Yuck.). And there’s the healing process. And the possibility that the beautiful living artwork you have envisioned might not look like what you were envisioning. Or you will have second thoughts. Or you will just get tired of it. Styles change, and it’s easy to change your hairstyle or color or clothes, but not your skin.

And last, there’s the hygiene problem. It’s one thing to have an injection or a blood test in a sparkly clean medical facility with highly trained and scrubbed up phlebotomists. It’s quite another to climb a set of rickety stairs outside an old brick building with graffiti on the walls and enter a storefront where an artist who has taken a class or two (quite possibly online) is waiting to ink you with a motorized needle that’s been intimate with someone else’s skin.

So, all that to say that I’m not the most enthusiastic tattoo fan that ever walked the planet.

But now I’m the proud owner of five tattoos. Can you believe it? Church girl has five tattoos.

At least they’re small. They almost look like blue moles. And I will have them for the rest of my life as a reminder of undergoing radiation treatments for breast cancer. They are used to map out the treatment site and also to warn future doctors that the site has already been thoroughly irradiated. It can only undergo radiation once in that particular area.

It’s been a long haul but I’m almost done with radiation. I’ve been going weekdays for almost 6 weeks now. I was in the gray zone, meaning that radiation was an option, not a mandate. There’s no clear and convincing research that demonstrates a benefit for people with my breast cancer stats (3 cm tumor, 2 lymph nodes involved). But there are indications that it’s helpful, especially for younger women (I’m 45 and that’s considered young where breast cancer is concerned). The idea is that any stray cancer cells lurking about the chest or lymph nodes will be killed off by radiation and lessen the chances of recurrence.

My five tattoos now border skin that’s sporting a reddish brown radiation tan. It’s a small price to pay for my future health, and while the tan will fade, the tattoos will remain.

I rather like them, now. Those blue dots are something of a badge of endurance and of hope. I didn’t ask for them but they’re helping me hang on to health and life. And who knows? Maybe one of these days I’ll have a tattoo artist connect the dots and make them into something more meaningful and artistic. Like a bird, like the warbler who visited me every day when I was recovering from surgery. But that’s a story for another day.

Until then, count your blessings. And your blue dots.

Dr. Susan Love’s Breast Book (Susan Love, MD)
A good all around manual on breast cancer and treatment. Recommended by my doctors and my surgeon.

Just Get Me Through This: The Practical Guide to Breast Cancer (Deborah A. Cohen)

A personal and practical account by a woman who went through breast cancer. Really helpful for chemotherapy hints and tips.

Breast Cancer Husband: How to Help Your Wife (and Yourself) Through Diagnosis, Treatment, and Beyond (Marc Silver)
My husband read this (I did, too). Really good and practical, too.

Thanks for the Mammogram! Fighting Cancer with Faith, Hope, and a Healthy Dose of Laughter (Laura Jensen Walker)
A good book by a breast cancer survivor that helped me to laugh at hard things. The book is out of print but you can buy it used on Amazon.

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Susy Flory is the author of So Long Status Quo: What I Learned From Women Who Changed the World (Beacon Hill). She wrote a book about being a strong woman; now, with a recent diagnosis of breast cancer, she has to live it.

As scary as it is to have cancer, it’s almost scarier to face chemo. I’ve blogged before about the terror inherent in the word “cancer,” and I think chemo is another one of those loaded, fear-filled words.

Before I had breast cancer, there were just a few things I knew, or thought I knew, about chemo:

• You go bald
• You lose weight and look very ill
• You can’t eat much more than jello and Seven Up
• Your life is ruled by nausea and vomiting

Well, it turns out I was wrong. I did lose my hair, but the other things never really materialized. I didn’t personally know many people who had undergone chemotherapy, but I’d heard all kinds of horror stories. And, when I was 20, my dad died from a reaction to chemo. Just like in The Ghosts of Cancers Past, my ideas about chemo were that I would look and feel like something out of Night of the Living Dead. But it wasn’t like that at all.

So, in case you don’t know much about chemo, or you are facing chemo and have some of the same unspeakable terror I was harboring, I thought it might be helpful if I described a typical three week cycle. Before my first treatment, I read everything I could get my hands on, but most things were either very clinical, or scary (long lists of side effects), or sketchy. I really never came across a detailed, personal account of what it’s like to go through chemo. This is my experience, so it may differ from your experience, but still. Here goes.

BEFORE

• Game Face. I’ve been watching the Winter Olympics in Vancouver the last couple of weeks, especially the ski and snowboard events. My favorite thing is to watch the competitors’ faces just before a race. They are prepping for the race of their lives, and the intensity, emotion, and energy emanates from their faces. It’s fascinating to watch. I found myself doing something similar the day before chemo. I was hyper aware of every action, emotion, and interaction as I counted down the hours before my infusion. It was as if I was preparing myself for a race or a battle, and I suppose in a way it is a battle to submit willingly submit yourself to something that is going to make you ill. The night before chemo especially, I felt as if I was putting on my game face, staying calm and controlled with an inner dialogue about how these drugs were an important part of my treatment, that my doctors were caring and knowledgeable, and that most people only experience a few of the dozens of possible side effects. I also prayed and put the whole experience in God’s hands.
• Pre-chemo meds. My chemo regimen included a course of steroids, starting before each infusion and intended to prevent adverse reactions. This gave me extra confidence, but the steroids also made me feel a little hyper and short of breath at times. The answer? Ativan, a mild anti anxiety med. It’s been a lifesaver during the emotional ups and downs of chemo. I generally hate taking any sort of medication (I’ve never smoked a cigarette or taken an unnecessary med in my life), but this one was a huge help.
• Chemo buddy. As a rule, I’m sort of a proudly independent cowgirl type, but breast cancer has taught me a different way to live. I couldn’t have made it this far without friends, and for each of my four chemo treatments, I invited a friend to go with me. My idea was to make it almost like a fun outing with a friend, with lunch and maybe even a little shopping after each infusion. It worked! Life is less scary when you face it with a friend. Ditto the chemo infusion room, chock full of very ill people hooked up to infusion lines. It’s brighter and warmer with a friend in tow, and after the first treatment, it made me almost look forward to chemo day in an odd sort of way.

DURING

• Nurses. The chemo nurses were warm and wonderful. They greeted me like a long lost friend, and I even became particularly close to one named Sharee, whose smile lit up the room. If you’re up for it, bring them a small gift or a home baked cookie. They work hard.
• The Lego Moment. The chemo room looks sort of like a beauty shop, with big chairs lined up around the edge of the room. You sit down, relax, and wait for your nurse to hook you up. I had a port implanted during my first surgery back in October, and it was there, waiting, just under the skin below the left side of my collarbone. The nurse has a little plastic piece that fits right onto the port, like two Legos snapping together, and it all starts with just a quick pinch. Doable. Then tape goes over the port to hold everything in place. Relax…you’re not going to accidentally jerk out the line.
• The Filling Station. After you get hooked up, the first thing flowing into your veins is saltwater. I couldn’t feel it at all. Next are the drugs. Mine were Taxotere and Cytoxan, given one after the other. Couldn’t feel them at all either, but I could look up at the monitor to see how much time was left, or at the IV lines to see the drip. I thought I’d be able to feel it going in, but no.
• Movie time. Once the infusion begins, it’s time to distract yourself. I brought ice water, crunchy snacks, and my iPod. I also brought a laptop and a lighthearted movie to watch with earbuds. I brought movies that made me happy: Mamma Mia, What About Bob, and Dan in Real Life. The chemo room offered TVs, but wouldn’t it be great if they had DVD players and a library of films for patients? My friend, Lorena, is working on this as a project.
• Walking on Air. After a couple of hours, I was done. The nurse flushed the port with some weird solution that tickled my nose (how something going into a vein in my shoulder would blast my nose, I have no idea), split apart the Legos, and said goodbye. Each time as I got up and walked out, I felt as if I were walking on air. I didn’t feel ill, but just like my body and head had been inflated like those red rubber bouncy balls we used to play Foursquare with in grade school. I had to walk a little slower, but otherwise felt okay.

AFTER

• Excuse Me. The first after effect I always noticed was some heartburn. Pepcid works great, as well as the anti-nausea meds that were prescribed for me. It wasn’t enough to keep me up at night, but enough to notice that something was going on in my stomach.
• Days of Grace. I had a day or two after each infusion where I felt okay. Not really myself, but okay. I was still on steroids at this point, and I think they give you a false sense of wellbeing.
• D-day. A day or two later, it hits. Major fatigue–you feel like you’re dragging around big ol’ elephant legs that just don’t function quite right. If you try to carry anything, it feels heavy. Walking up the stairs is slow and you have to think about lifting each leg as you go. Your brain feels fuzzy and it’s hard to read or concentrate. Your body sometimes feels hot or cold. You’re supposed to drink lots of water so you spend a lot of time in the bathroom. Your digestive system doesn’t work quite right–either things slow down or speed up.
• Lizard Mouth. One things I didn’t anticipate was the loss of taste. Chemo burns out your tastebuds, and bread tastes like the stuffing from inside your couch cushions. Ice cream tastes like cold lotion. And water tastes creamy. After a few days, the skin inside your mouth goes from smooth to grainy, like lizard skin. You have to brush your teeth a lot and gargle with baking soda-infused water, to reduce sores (I had a few, but they were doable.) All of this makes eating a whole lot less fun. I gravitated toward spicy things that I could taste. I developed a new fondness for spicy brown mustard, because I could taste it. I could also taste fresh fruits, veggies, and meat. Not much else.
• Aches. At times your head aches, your body aches. Oy! The aches, they move around. This is the time you really want to moan and complain, but I tried to remember how grateful I was for chemo and for the medical advances that have made it possible to beat back breast cancer. Most of the time I was successful, but a little moan may have escaped out now and then. Naps are a must.
• Crybaby. All of the above happened the first week after. The second week, I began to feel better physically, but my emotions took a beating. I don’t usually cry a whole lot, but small things would set me off. Loud noises, activity, and any kind of family conflict made me feel like I was being beaten with a sledgehammer about the head and shoulders. I finally researched this, and discovered that the chemo affects your nervous system and makes you more sensitive and vulnerable. It got so that my daughter, every time my voice sounded a little weak, would peer into my face and ask, sympathetically, “Are you going to cry?” Embrace it. Cowgirls cry.
• The Eyes Have It. After my second treatment, my eyes began to burn and water. I looked like I was crying all the time. Eventually it got so bad that I couldn’t read or watch TV. Simple solution: steroid eyedrops. Fixed.
• Chemobrain. People used to joke about this, but researchers have found that chemobrain is indeed a real phenomenon. Chemo affects your short term memory, and gives you a feeling of haziness or fogginess. Thankfully, it does not affect your intelligence or your ability to work. It’s frustrating, but usually temporary. And it’s a great excuse to buy a really cool organizer to keep yourself together. Ya gotta love the Franklin Covey clearance rack!
• Going Commando. I started losing my hair about 2 weeks after my first chemo treatment. This, by far, was the hardest and most emotional side effect from the chemo. However, it also has become sort of fun to wear funky hats, and try out new hairstyles and colors. Right now I’m liking my Meg Ryan blond wig, lent by a friend. Who knew I could carry off platinum hair? I wrote a blog post about going out bald, or commando, but so far haven’t had the guts to do it. But I will. Pictures to come.

ICK

• Hot Flashes. Chemo can send you into menopause. I now know what a hot flash is. And it’s strange; your body feels like it’s glowing hot from the inside, but if you touch your skin, it feels cool. You get sweaty (especially with a wig) and it wakes you up at night. There’s no way around it, this side effect stinks.
• Neupogen Injections. Two days after each chemo treatment, I had to start a course of five daily Neupogen injections to stimulate my body to produce more white blood cells to stave off infections. These injections are given at home (I talked my wonderful husband into doing this for me–he became a pro). You keep the pre-filled syringes in the refrigerator and take them out about an hour before bedtime. The injection goes into the extra skin around your belly. You pinch it, swab it with a little alcohol, then inject. It takes about 3 seconds and you just feel a slight sting. Here’s the trick: if  you pinch the skin hard and hold it, then you barely feel the needle.
• Ouch. Bad news, though. The Neupogen causes bone pain. Because it’s stimulating your bone marrow to produce more white blood cells, your bone marrow swells and you get achy bones. It hurts! My doctor let me take Advil and the occasion Vicodin. Along with Ativan, these meds helped me make it through this phase of chemo.
• The Cumulative Effect. Each of these things I experienced became stronger and more long lasting with each chemo treatment. For example, after my first treatment, I was able to go skiing and snowshoeing up in the High Sierras (during the third week of the cycle, when I was feeling pretty good). By my fourth treatment, I was happy to take a slow walk around the block. My body was definitely weaker and slower to recover.

THE GOOD NEWS

• By the third week of each three week cycle, I was feeling pretty good
• Overall, no vomiting and very little nausea
• I could eat whatever I wanted (although I couldn’t always taste it)
• My weight stayed the same
• People say I don’t look ill. To me, I look a little more pale, my skin is dryer, and I’m wearing a wig, so I don’t think I’d win any beauty contests. But when I slap on my makeup, put on my blond Meg Ryan wig and smile, I think I look okay.

There’s no way around it; cancer is a major challenge and chemo is horrible. But although it’s horrible, it’s an amazing tool in the cancer fighting toolbox, it’s temporary, and it’s doable. But the fear? That’s another thing altogether. My fear of chemo reminds me of the time when my dad was driving our old olive green Ford station wagon down a highway in Arizona. A hot breeze kicked up, and big thorny tumbleweeds started rolling down the highway. All of a sudden, the wind direction changed and a giant tumbleweed as tall as our car rolled directly toward us. I was about 7 years old, in the passenger seat, and it looked like we were about to be crushed by the tumbleweed. It was like the scene out of Raiders of the Lost Ark where Indy faces down the rolling boulder. I screamed on impact and the strangest thing happened: it disappeared, crushed into a million tiny pieces of dried brown grass that scattered across the road under our car. We felt nothing.

My fear of chemo was like that. I felt overwhelmed and like I was going to be crushed by something much bigger than me. But I wasn’t, and I’m done. And if you or someone you love is facing chemo, you’ll be done soon too. Just fasten your seatbelt and let that station wagon roll on.

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Susy Flory is the author of So Long Status Quo: What I Learned From Women Who Changed the World (Beacon Hill). She wrote a book about being a strong woman; now, with a recent diagnosis of breast cancer, she has to live it.

1. Showers take 5 minutes. Really.

2. Shaving my legs? Nope. Don’t have to. They are smooth and sleek.

3. Armpits? Ditto.

4. No more $45 haircuts.

5. Shampoo, conditioners, mousse, gel, and hairspray: No longer needed (although I should be feeling some more money in my pocket at this point. Hmmm.)

6. I don’t have to take the time to comb, dry, and style my hair. I’m much faster than Robert at getting ready now (well I was always faster, but now I’m much faster. I’m competitive, so I get a little thrill every time I beat him at something, even if it’s petty.)

7. Cool and even exotic hats. I have a hand knit blue and green beret, a black Anne Hathaway/Devils Wears Prada hat with a buckle on the side, a fur and purple/silver fabric cap that looks like something a cardinal would have worn in the Renaissance, and a pink ski hat with fleece inside. Love them.

8. When I take my hat or wig off, I like to rub my hand back and forth over stubbly head. Why? I don’t know. But it feels good.

9. No hair in my food.

10. I never have a bad hair day.

Can you think of any more? Help me look on the bright side!

* * * * *

Susy Flory is the author of So Long Status Quo: What I Learned From Women Who Changed the World (Beacon Hill). She wrote a book about being a strong woman; now, with a recent diagnosis of breast cancer, she has to live it.

My cancer is not my father’s cancer.

Two very simple statements, but the journey I undertook to be able to say them, and more importantly, to believe them, was perilous. What I didn’t understand when I was diagnosed with breast cancer five months ago is that I would not be experiencing this health crisis alone.

I’m not talking about family and friends helping me and supporting me; I hoped and prayed that they would (and they have). What I mean is that the cancer journey I started on in September is not just me fighting breast cancer — it’s me and a whole pack of ghosts of cancers past.

There’s my great-grandmother Susanna, who I was named for. She was a beautiful and tough Arkansas Ozarks mother of ten who died in her late sixties of cancer. No one is quite sure what kind.

And my husband’s grandfather Duffy, who died of lung cancer. Robert took him to his radiation treatments as he wasted away. He ended up so weak that my husband had to carry him into the hospital for his treatments towards the end.

There are other close relatives and friends. Marilyn and Josephine, who died of ovarian cancer. David and Stan, who died of brain cancer. Lou Ann, a next door neighbor who died of breast cancer.

And then there’s my dad. He was an amazing father and I adored him. A Texas cowboy, he was the very first in his family to go to college. He survived a horrific childhood where both parents died and he ended up an orphan at 15. He quit school to help support his two younger brothers, met and married my mom at 19, and, with her support, went to night school to get his high school diploma. He then applied to Texas A&M, graduated with honors, and moved out to California to work for Safeway. He built a new life in the Golden State and provided my sister and me with an idyllic upbringing. He loved horses, and I grew up on a string of fat and friendly ponies. My favorite memories are of trail rides with him in the gorgeous green foothills surrounding our house. He was active, fit, and happy. He loved life and he loved us.

But when he was 45 he contracted renal (kidney) cancer. And when he was 47, despite surgery, radiation, and chemo, the cancer advanced into his liver and he died.

So when I had my first indication that there might be something quite dangerous lurking in my breast, the ghosts started to stir. Fearful memories of others’ illness and death dusted themselves off and came back to life. Long forgotten images and conversations and smells and sounds came to mind, unbidden and unwelcome.

Dealing with breast cancer is enough, in and of itself. There’s so much to learn about the disease and the treatment, so many emotions and experiences to process, so many fears to battle. I knew this, in a way. I knew there would be much work to do and that I had a long and uncertain journey ahead of me. I just didn’t know that I’d be undertaking the journey with the ghosts of everyone I’ve ever known who’s died of cancer.

I’m not quite sure what it is about cancer that is so much more frightening than, say, heart disease or Alzheimer’s or even the H1N1 flu. I’ve noticed that some people are even afraid to say the word cancer, dancing around the word or calling it “the Big C.” There’s some kind of dark power in the word. I feel it, and often I talk about “what I’m experiencing” or “this health issue” or “health problem” without using the word itself. I’m not sure why, but I do know that the dark cloud of fear and memories that goes with cancer is a very real part of the battle.

And those memories are wrapped up in the people I’ve known and lost to cancer, despite the best efforts of doctors and surgeons.

Very early on around the time of my diagnosis, I began to vividly relive my dad’s illness and death. I felt afresh the agony of losing him and just the unfairness of the whole damn thing.

And I agonized over his age. He had been 45 when he got cancer. I was 44. I couldn’t get past those numbers. They haunted me. Was everyone in my family going to die in their forties? Would my children have to experience what I went through in losing a parent so young? It was a dark time. I was at a women’s retreat down in the Santa Cruz mountains during this period, and I had the time to think and grieve and cry and argue with God. This was so unfair. How could he do this to me and my family? Why did I have to go through this? I explained to God that I didn’t have time for cancer. I’m writing books and speaking and doing ministry. I’m raising kids and being a wife and living my life. I’d been working out in the months previous, living and eating healthy. I was mentoring a budding speaker and teaching a women’s Bible study and promoting So Long Status Quo.

I didn’t tell anyone at the retreat what I was going through and I felt very alone and afraid. I really didn’t know where to turn.

Then the retreat speaker, a gorgeous and wise woman, shared a Bible verse that rocked me. I don’t remember much of what she said, but I do remember this. It’s from the book of Phillippians in the New Testament:

Don’t worry about anything, but pray about everything. With thankful hearts offer up your prayers and requests to God. Then, because you belong to Christ Jesus, God will bless you with peace that no one can completely understand. And this peace will control the way you think and feel (Philippians 4:6-7, CEV)

Another translation reads like this: “Be anxious for nothing…..and the peace of God, that surpasses all understanding, will guard your hearts and minds through Christ Jesus.”

I clung to that verse like a blind woman stumbling down a dark hallway. I memorized it, and repeated it, and soaked it in. I practiced it. I did what it said. I prayed, and thanked God for all the ways he has blessed me, and I told him my worries and my deepest, darkest thoughts. And slowly…slowly…it worked. It doesn’t make much sense, but I have peace.

And that’s it. That’s how I’ve been able to stay strong on this journey. It’s my little secret….and now it’s yours, too.

*  *  *  *  *

TREATMENT UPDATE: I have my 3rd chemo infusion today. One of my dearest and oldest best friends, Lorena, is taking me today. This is 3 of 4, so I’m almost done! After that, probably a course of radiation to mop up any stray cells in the area, and then Tamoxifen, a hormone blocker, for five years. I’m feeling pretty good–just experiencing some bone and muscle pain from Neupogen injections to boost white blood cells in my bone marrow. And I still haven’t had the guts to go commando (an expression I co-opted for going out bald), just yet. But I still have the itch to do it, so stay posted!!

Susy Flory is the author of So Long Status Quo: What I Learned From Women Who Changed the World (Beacon Hill). She wrote a book about being a strong woman; now, with a recent diagnosis of breast cancer, she has to live it.

But you wouldn’t think a cowgirl would have a hard time losing her hair.

So far I’ve been able to rely on some innate strength, courage, and bravado to navigate the last few months of breast cancer. I’ve gathered strength from family, friends, and God. Just remembering that he has a plan for my life has given me peace that this illness is more than some sort of random maelstrom with an unknown conclusion. God is at work, and he has a plan.

Even facing my first surgery, and then my second, I felt pretty peaceful. I remember the night before the mastectomy, looking at my breast and saying goodbye to a part of my body that had been part of my womanhood and nurtured both my children. It was hard, but I felt peace. I was sacrificing a breast for good health and a future. It seemed a fair trade.

After I recovered from the second surgery, chemotherapy loomed. There are many, many, many potential side effects. There are thick booklets and manuals and classes to inform you of the variety of ways in which chemo will impact your life. For starters, there’s the more common things like stomach problems, and fatigue. Your white and red blood cells are impacted, which can lead to infections and anemia. And then there are the more odd and obscure effects, like the impact on your fingernails and toenails (they can actually come off!), neuropathy (your hands and feet can get numb and lose sensation), and loss of taste (your tastebuds die out and everything tastes the same. I can taste pretty spicy things–I had a turkey sandwich today with pepper jack cheese, garlic spread, and dijon mustard that I enjoyed. But bland food tastes like rubber, cardboard, styrofoam or playdough depending on the texture.)

But of all of the things I’ve faced so far, the hardest, so far, has been the prospect of losing my hair. My mom (partly disabled, who lives with us) kept trying to reassure me with some charismatic type pronouncements of “You are not going to lose your hair.” But I knew it was inevitable; the oncologist said the hair comes out two weeks after the first treatment.

With my fuzzy headed bro-in-law, David

And from the very first pathology report that indicated I would need chemo, losing my hair has frightened me. It’s such a primal experience. It exposes your head, which hasn’t seen the light of day since infancy. It takes away a major marker of femininity. It throws your features into the spotlight (my big nose! My crooked smile!) It sets you apart from most other women. It slots you into the ranks of the seriously ill. It makes people stare at you. And feel sorry for you. It makes you look weak. You have to make the decision of how to cover your head: scarf? Cap? Hat? Wig? Or…going commando and just proudly wearing your bald head out into the world.

This last Sunday I wore a wig to church for the first time. It was excruciating. It needed some trimming and shaping because it was just too bulky. I felt so self-conscious, like I was walking around with a big black mop on my head. I thought about myself all during the service (sorry, God), and at Chipotle after I almost broke into tears at the table feeling sorry for myself. Somehow having no hair kicked my butt. What happened to my inner cowgirl? How have I been able to face surgery and chemo, but not the thought of being bald? I feel like such a weak willed wimp.

Then something happened Sunday on the way out of church. We were walking down the steps in a hurry (so I didn’t have to talk to anybody or see them look at my wig) and I noticed a young guy walking slowly in front of us. He had his arm bent awkwardly across the front of his body. When I got closer, I noticed that he had a deformity. His right wrist and hand were mangled and twisted together, and he held it gently across the front of his body. He walked slowly, alone, with grace and composure. And the sight rocked me.

His hand had somehow been taken from him, and it’s not going to grow back. He can’t use it. It’s very visible, and I’m sure he gets stared at often. Yet, and yet, he’s alive. He’s happy. He’s beautiful. And he’s a survivor. I, on the other hand, had been obsessing over the temporary shutdown of some hair follicles as a side effect to medication that will give me a better chance at future health. I had been obsessed with myself and as I walked behind the young guy I saw a different, less self conscious, more gracious way of living. I want that. And if giving up my hair will move me further along that path, I accept it.

I’m going to try it again. I’m going back to church this Sunday. And my goal is to center on God and his goodness and faithfulness. Not my fuzzy little head.

So here’s where you come in. I need your help. I’m taking a poll. Should I wear my wig (which I’ve since had trimmed and it looks pretty good)? Or should I wear a hat? Or go commando and wear nothing? Whatever the results say, I’m going to do. Hair, or lack of it, is trivial. I’m not going to let not having hair take up any time or emotions or spiritual energy. It’s just hair, darnit!

Leave me a comment: Go to church commando, hat, or wig? It’s your call.

Shocking. I was appalled. Why? Because I don’t feel ill.

I’m not even quite sure exactly what it means to be ill. Maybe you can help me figure this out.

A couple of months ago I was diagnosed with breast cancer. Since then I’ve had several diagnostic tests, two surgeries, and a plethora of doctor’s visits and other medical appointments. My body has been sliced, diced, glued, taped, and stitched. I’ve been anesthetized, medicated, i.v.ed, and drained of vials of blood sent off for diagnostic tests. I’ve traded a breast and some lymph nodes for a surgically implanted port that will be used for chemo (and I’m not quite sure that’s a fair trade.) I’m going to have a few weeks of chemo, then I’ll be on a hormone blocking drug called tamoxifen. Later, a few more outpatient surgeries to even things up in the cleavage area. Then done…at least for now.

Becoming a member of the pink ribbon club has been invasive and costly in many ways, some of which I’m just beginning to understand. But there’s this: I don’t feel ill.

Just what does it mean to be ill?

I picture someone with pale skin, hollow eyes, and thin limbs. They move slowly and don’t have much of an appetite. They have very little energy and need help doing simple tasks. Their voice is small and weak. They’re cold and wear bulky sweaters and knit hats.

I do admit I was in bed for a couple of days after each surgery, and I did move slowly to protect the surgery site, but I never felt ill. I had to rest more, especially at night. I couldn’t drive for a while and still can’t lift anything heavy. My brain was pretty foggy at first, but the fog seems to be breaking up (at least I think so–you’d tell me if I’m delusional on this, right?)

And now, four weeks after my second surgery, I feel great. Other than a little soreness and stiffness in my arm and shoulder, I feel healthy, strong, and energetic. I take fast walks on the local regional park trails with our chocolate lab, Eli, and I’ve worked out twice at the gym (Eli is sitting by my desk with his tennis ball right now, waiting patiently to go on a walk). I ate a hearty lunch today (spicy Mexican food) and I still talk loud (my kids think I’m getting hard of hearing, but I’ve always talked loud). I’m wearing sweaters but that’s because it’s freezing cold outside. And I’m getting back to work.

Am I ill? I’m just not sure what that means, or if I’m willing to admit to it. I did have a malignant tumor, although it’s gone now. And it is possible there are some cancerous cells floating around in my body. So I will be having chemo, starting Monday.

Chemo might make me feel ill. In fact, it probably will as the medication destroys all fast-growing cells. Normal cells will recover and continue functioning; cancer cells will die off. This process, and my body working hard to repair itself, will make me feel tired, will probably make me pale, and I might move more slowly. I’ll probably feel weaker, colder (thicker sweaters), and I will lose my hair (hats). My brain might get foggy again.

So am I ill? I’m not sure. Will I become ill? I don’t know.

But, if you’re driving around and see a tall, pale, bald woman in a heavy sweater swinging a leaf blower around, watch out.

I might be ill, but I can still wield power tools.

What’s your take? What do you think it means to be ill?

It’s not that I’m particularly well endowed, or that I wear those super low v-neck Tshirts hawked by Abercrombie & Fitch.

No. It’s because something is missing…and people know it.

Three months ago, in early September I was diagnosed with breast cancer. I noticed a little dent in the side of my right breast and went in for a mammogram. Results: irregular (this is a nice way of saying “Uh oh!”). Then, in quick succession, I had an ultrasound, a biopsy, and a very unpleasant phone call from an apologetic radiologist. This was followed by a lumpectomy (unsuccessful), a mastectomy (successful), and, starting next week, chemo.

So I’m missing a breast and people look at my chest and try to figure out which one. It’s okay—don’t feel bad—I’d look too. I have looked. It just feels weird now to be the one being looked at.

My life has changed and will never be the same (is this good? Or bad? Still working on that.) Having breast cancer is time consuming and very expensive in terms of money, energy, and emotion (not to mention, my hair). It’s almost like having a demanding new career that I didn’t go to school for and wasn’t quite expecting. But it’s mine, it’s been given to me, and I can’t opt out.

And I haven’t written a word about it until now.

My tagline for my writing career is “Start a Little Adventure” It’s on my website and my business card. It even serves as the very last line of my book, So Long Status Quo, a memoir about women who changed the world. In fact, I was talking to my sister-in-law on the phone when all of this was first going down and she said “You wrote a book about strong women.  Now you’re going to have to be one.”

Right.

So, just as it does for every woman who joins the pink ribbon club, breast cancer has rocked my world. I’ve been living it, with no thought of writing about it, until last week when I had coffee with a friend. She lives in Wyoming and was in the San Francisco Bay Area for a friend’s wedding. We had the chance to sit down and talk at Bodi’s Java, an awesome local coffee house.

My friend loves books as much as I do. We’ve joked before that books are our first language. We talked about lots of things and at some point got around to my cancer thing.

“Are you going to write about it?”

Deep breath. Hold it. Exhale. “I don’t know.” There are so many reasons not to. It’s embarrassing, It’s painful. It’s public. It’s new, and raw.

“I’ve been wishing you would,” she said, quietly. Her voice held a note of longing.

So, dear friend, here we go. I’m going to write about it because books and the written word are my first language. It’s how I make sense of the world. It’s how I can even begin to know who I am and what I’m doing. So I guess that trying to make sense of breast cancer can only happen, for me at least, through words. And maybe there are others out there like me.

Another deep breath.

Start a little adventure? Okay. I’m in.