"they have dragons"

A woman at work was recently diagnosed with breast cancer. I stepped in to see her, and said “Welcome to my club.” She said she didn’t want to be in my club. I told her I understood that and we hugged.

When you find out that you have breast cancer it is amazing how quickly you learn who else in your world has or has had breast cancer. It’s like a Doppler radar picture rippling out throughout your own 6 degrees of separation. While the numbers are alarming and sobering, they are also comforting. There’s a bunch of survivors out there.

And we help each other. I spent an hour on the phone last night with my roommate from the surgery. We compared notes about numb armpits and spent a lot of time laughing as well. Misery does love company after all.

There seems to be an unwritten, but intrinsically understood rule among cancer survivors: they must share. They must pay the story of their survival forward. Who better to pass on the precious flame that is hope? The American Cancer Society understands this very well. In their Cancer Recovery program they partner new “inductees” with survivors who seem to be trained in the exactly perfect time to call.

Here’s the thing though. Cancer is an equal opportunity employer; it has no problem meeting diversity quotas, but it is also careful to give each of its employees a unique experience. So there are no blanket assurances. You can’t say, “There won’t be any nausea at all!” All you can say is “I didn’t have any nausea!” And even knowing that each body handles these treatments in a different way, it is still reassuring and comforting to hear that this person at least had no trouble.

It’s a little like when Harry Potter was in the Tri-wizard Tournament and warned Cedric that one of the trials was going to be dragons. He couldn’t tell Cedric what to do about the dragon--they each had a different kind-- but just knowing about the dragon certainly helped.

the first 30 drips

The warning labels on the medications known as “chemotherapy” make ‘take with food’ look like small meaningless asides for amateurs.

Of course, they don’t simply hand you the IV package to read over. The doctor and nurse sit with you and explain each point and then hand you paperwork for a little light reading at home. You come away pretty convinced you shouldn’t be anywhere near the stuff, let alone let someone else deliberately poison you with it.

Still, my first chemo went well. The nurses hung out for “the first 30 drips” watching carefully for undue reactions. The most painful thing for me was actually getting the IV put in, a procedure I am normally “very good about” I kept telling everyone, but for some reason hurt like the dickens. Add to that the incredible stomachache I had when I arrived—oddly, the same one I took with me for my surgery (what nerves will do!).

We were given a private room for my first time and trooped in with magazines, snacks and a portable Scrabble game. (Shall I just mention here, that yes, I did whup my sister in Scrabble in a first that probably had to do with the fact that I was pumped up with steroids?)

Then, it is simply waiting. It takes a long time to drip and you are told to drink and pee as much as possible, chew ice chips and eat snacks and a light lunch. We read Christmas magazines. My daughter darted out for Panera. I whupped my sister in Scrabble (oh, already mentioned that didn’t I?).

When we arrived home I was tired, but who isn’t around 3:30? We decided then and there that chemo nights would become movie nights and so off we went to AMC where I stood far from the crowd while the tickets were bought. Not bad.

Fast forward to the 6th day—er night. It is 4:15 and I am wide awake at the computer because I am (ironically?) tired of lying awake. Last night the temperature drop combined with the 6th day caused ripples of spasms in my lower back that had me cringing while I attempted to ignore it all and watch Glee.

I think it is fixin’ to snow.

I also have what I am calling “pink tissue issues”—a condition where it feels like anything on my body that has pink tissue feels sensitive. This is because the drugs kill fast-growing cells and those cells in our pink tissues (aka mouth) are fast-growing.

Just call me, sting-ache-itch and you’ve pretty much covered it.
There are a few soothing remedies, however. One is the knowledge that I just have to do this three more times. The other is the timely delivery of Christmas cookies. And third? Same cure Harry Potter used against dementors—chocolate—seems to work with chemo as well…that’s my theory anyway.

Vanity

Admittedly, going back to work was not easy. For the most part it had to do with the simple physical drain. Who knew it could hurt to staple something, or use the paper cutter? Being on my feet after nearly three weeks of only wandering from the kitchen to couch, was a challenge that had me back on the couch again the minute I got home until I dragged myself to bed. Yet each day got better, and my range of movement so improved that I’m thinking the paper cutter will offer no challenge at all next week.

But the difficulty of returning also had to do with the way I look. I stood before the mirror the night before trying on different outfits in a futile attempt to find something that would hide the fact that I no longer have breasts. I will have breasts. I had reconstruction along with my mastectomy, but what that means is the plastic surgeon implanted tissue expanders, which will be filled each week, until I essentially “grow” a new pair.

I wondered if I should have returned with a prosthesis—falsies—thus sparing myself this conspicuous feeling. My daughter assures me that no one is staring at my boobs (of course not, I don’t have any!) and that it is my vanity that is the issue.

It certainly is.

Funny how cancer seems to want to teach us lessons about all the major sins. I’ve written about one already—gluttony. But vanity is the sin of the moment, even though I’ve never considered myself an overly vain person.

Here’s the truth though. I’m pretty vain about my hair.
I hated my thick red hair when I was little. My mom would take me to a barber instead of a beauty salon, because it was so thick and unruly. Embarrassing. For the first 12 years it was always short and coarse and bushy. Then an illness kept me at home for three months and oh darn, my hair grew and from then on, I had long red hair. One nice quirk about being a red head is that teachers always knew my name by the second day. Another thing that happened was that strangers would stop and compliment my hair. I was asked if it was real, asked if it was the natural color. I guess it was my one good feature, a crowning touch to crooked teeth, squinty eyes and freckles. So that even now, despite the dulling of age and lightening of gray that on my head happily looks likes highlights, I ‘ve come to love my red hair, even if I am never content with the specific haircut.

It makes me sad that with the migrating patterns of the world’s population, the dominant hair color genes vs. recessive genes means that red hair doesn’t have a chance of surviving beyond another few decades.
It makes me somewhat annoyed that my kids cringe at the possibility of their having a “ginger baby.”

But it really bothers me that my hair is going to fall out, and I will be one lumpy, bald woman with crooked teeth and squinty eyes and a wig that is not red at all because the red-haired wigs all looked too fake.

Yes, it is temporary...but is it? Many people I know had their hair return white, often curly. Interesting and horrifying.

Still, in the real scheme of things, how important is this? We are talking about survival, and so this must seem a trite and superficial thing to whine about.

But sometimes a person needs to whine about insignificant things, because often they loom up there with the significant things. Because after all, there are three basic issues every human, from age 16 to 95 worries about: Is there a God? Who do I love and who loves me? And, “does my hair look okay today?”

the cranky phase

These days I have an interesting silhouette. I imagine my stomach has always been this big; I guess I just never noticed because I couldn’t see it beneath my boobs! (Which come to think of it, often used my belly as a resting place…) So right now I kind of resemble Yogi Bear or maybe Wimpy… If I didn’t know better I’d accuse the doctors of simply shoving my boobs into my belly. (When I asked the surgeon about this today he assured me they had not!) Add to this my two drains that end in little hand grenades that are pinned under my shirt—increasing the bulk—and you have a truly chic look.

My hair as seen in silhouette is a frozen tableau of mussy-ness. It retains its bed-head shape because while I have had it washed for me (as I stand bent over the kitchen sink) I haven’t truly showered and so I can’t believe two or three pitchers can really be considered a good rinse. Ah, at least I still have my hair. We are looking at the bright side of things are we not?

It all comes to this: I’m dirty and itchy and lumpy and misshapen and everyone who visits me tells me I look great. Oh yeah? You should see how great this looks. I can hardly look at it myself-- at this lumpy, dimpled, puckered line that runs across where my breasts used to be.

Tomorrow it will be two weeks. My daughter and I have cabin fever. I have been reprimanded for using too many water glasses. It has been suggested that she is getting cranky. I have been assured that I am getting cranky as well. There are only so many food network shows a person can watch in between Oprah and Ellen.

I know what all this impatience and frustration means. It means I am healing. So when I catch a glimpse of my styling-self in the mirror (a hazard in a house with mirrored doors everywhere) I just laugh.

As for my cranky daughter, I am trying to limit myself to one water glass for the entire day, and trying to put my dirty washcloths in the laundry basket, not on the floor, and trying not to feel guilty for being so happy that she has come home to take care of me.

Blueberries for Sal

When I was little, growing up in Michigan, August was the month that my sisters and I would ride our bikes to the woods at the end of Swede road. We looped buckets over our handlebars because we were on a mission—picking blueberries.

Blueberry picking was a hot and sometimes painful business. For some reason the best berry bushes were always surrounded by bushes with thorns. You had to sidle your way through the prickly branches and then were plagued by bees and mosquitoes. It was slow going filling a bucket, but always worth it. First of all, there was mom’s promise to make pie. But the best way to eat blueberries was in a bowl, with milk and sugar, stirring so that the milk turned blue. Imagine eating a pint of blueberries like this now with blueberries, at $5.99 a pint, more if you buy organic, which with blueberries, you should do.

Of course, it was a different world. Consider the differences. What parent today could send their kids on bikes to spend several hours in the woods at the end of the street? (For that matter, how many of us have woods at the end of our street?)

What brings me to this tangent is my cancer-fighting diet. Blueberries star. Blueberries have one of the highest antioxidant activity rates of any fruit. Blueberries are a wonderful fruit, and while I can’t rationalize eating an entire bowl with milk and sugar, I have been putting them in my oatmeal, in my pancakes, on top of my whole wheat bagel, and on my waffles.

Cherries are good too. And because I lived in Michigan, there was naturally a cherry tree in our back yard. It takes a few years for a cherry tree to begin producing a hefty amount of cherries but once it gets going, the fun thing to do is to have a competition spitting pits at the neighbor’s garage from the picnic table. Of course, the neighbors did not particularly care for this activity. (But that was only ½ as much fun as participating in a pit-spitting contest at the Barber’s house--another family with Michigan roots--where else can you spit pits at each other at the dinner table?)

When I was a blueberry picking, cherry-pit spitting little girl in Michigan, I was a skinny little thing. I rode my bike, did hand-springs, I broke into a sprint the minute I stepped out of school and liked to go to the park alone just to swing and think. My dad made us oatmeal for breakfast and despite our efforts to fool our parents (the old peas-under-the rim-of the plate-trick) we were made to eat our vegetables. On Saturday movie nights we ate popcorn with orange juice—with the very occasional root beer float treat. As for fast food, McDonalds was a rare event, such as the night mom and dad had bridge club, and Dog and Suds was reserved for unique celebrations or difficulties, like a broken stove.

Spin ahead with me now some 40-odd years, from my Michigan roots to this present-day Illinois suburban self. The world has changed. I’ve changed. I’m no longer the skinny girl who loved nothing more than a juicy orange, a good book and a stretch of green grass to lie in. I still love a good book, but with so many choices, would an orange be my first pick? I have to admit that for the last several years, my favorite orange snack has been Cheetos!

When my husband and I were in East Germany (pre-1981) I remember thinking that all we needed to do to end the cold war was to take the communists and drop them off at the Jewel-- the difference being choices. In East Germany we shopped every day because there was no ability to store food, there was no abundant supply to save for later and we never knew what might be there. We saw bananas once in four months. When we would go for a walk after dinner, we could tell that everyone had the same thing to eat that night. Cauliflower was in the store that day and we could smell cauliflower in the air throughout town. I adore capitalism as a result of this experience, and yet, perhaps the abundance of choice that I have reveled in for so many years has done me no favors.

Seventy per cent of cancer can be attributed to lifestyle, but can I possibly blame my cancer on capitalism and a life of privilege? I don’t think so. The change from a skinny little girl who loved to run and eat blueberries, to this person I am, one who has to force herself to eat fruit and vegetables and choose exercise over reading a book, has been a slow erosion of discipline, developing tastes and good choices. I still love capitalism. I especially love the ability to choose.

I choose to change. Somewhere inside me is a skinny little girl who longs to climb a tree with a book under her arm and an apple in her pocket for later. Surely that’s a good compromise.

under the elephant

There are a couple of things you are advised to do before surgery. Go to the dentist. Remove the tail end remnants of toenail polish from the summer. Have your wedding ring cut off.
Of course that is only for those of us who can’t just slide it off. I’ve worn my wedding band for 31 years, despite being a widow for 8. Shall we just say that my finger and ring were one? A few years ago a psychic told me that my husband wanted me to keep my ring on. I laughed because it really wasn’t an issue, I couldn’t get it off! But the pre-surgery nurse told me to have a jeweler cut it as the surgeons may do well with flesh, but they are not so good with precious metals. So off we went to the jeweler who brought out his little tool (apparently they do this all the time) and told us it took only a second. Ten minutes later he was still grinding away. After I told him about the psychic, he began to address Jack. That worked. The ring is off, waiting to either be resized or made into a necklace, my finger left bare and hideously misshapen.
All these things were taken care of, and work continued, all the waiting and anticipation gathering until the night before finally arrived, where of course, there was the fast, beginning at midnight and even worse, the no water rule.
In the trick time has of slowing and speeding up, I finally found myself being rolled into the operating room. Why are operating rooms on TV always dark? This room was blindingly bright and I had a nurse attending me named Alla (pronounced Allah) and another tech named Angel. It seemed a fortuitous beginning. I asked if they were going to page Jesus as they pulled my arms out and strapped them onto what seemed to be a cross. They laughed and that is the last thing I remember from the surgery.
So it is good to make these preparations before surgery. I had good advice. Unfortunately, no one mentioned the elephant-- the one that was sitting on my chest when I woke up.
Later I asked my mom, who had a mastectomy 14 years ago, “Why didn’t you tell me about the pain?”
“Well, I didn’t want you to go into surgery with any apprehension,” she answered.
Good plan, I’m glad I didn’t know how painful it would be.
The nurses asked about my pain often, “on a scale of one to ten…” for some idiotic reason I kept choosing 6 or 7, when it was clearly a 12. My roommate (also a redhead, also a widow, also with breast cancer) kept telling her nurse, “I’m not in pain at all.” It reminded me of the roommate I had after delivering one of my kids, who kept telling everyone that her labor was only 45 minutes and didn’t hurt at all. I wanted to smack her. Why was I such a wimp? It turns out my roommate hadn’t had a double mastectomy.
And as she pointed out, it all evened out, she didn’t have pain, but I had flowers and the window.

sisterhood

An emergency meeting of the Moms Night out group was called for the Sunday following my Friday diagnosis. This is a group of women I have known for over twenty years. It began as a playgroup, morphed into a monthly dinner away from the kids and evolved into a group of friends, who trust each others’ opinions on things like doctors, contractors and hairstyles, who use each other as sounding boards and who have stood by each other during weddings, funerals and the emptying of our nests.
Mostly, we have fun. We are the loud group of women in the corner of restaurants that you hear howling with laughter. To be a member of the MNO group it is a prerequisite to have a sense of humor and be able to tell a good story.

I have always valued friendship. I still exchange Christmas greetings with a childhood friend I have not seen since I moved away from Michigan over 40 years ago. (But I know that she married and has children and grandchildren now.) I spend a weekend every year with my two best friends from high school, catching up and supplementing letters and phone calls with new experiences. I am part of the “magnificent 7” a group of women brought together by one common friend who wove her friendship with each of us into a net that enclosed us all. Because I have lived in so many places and worked in many schools, I have a treasure chest filled with women friends who are like sisters to me.

It may be the fact that I grew up with three sisters that I so value my women friends. My sisters all live in different states now. It is true that we can go weeks without calling or e-mailing, but it is equally true that my sisters have always been right here when I needed them. Once when I was pregnant and had the flu, one of my sisters drove an hour through a snowstorm to come help me put my son to bed, then put me to bed. My youngest sister walked into the hospital room when my son had emergency surgery—despite the fact that she lived 500 miles away. My oldest sister will be with me for my surgery.

The truth is (and as women we all know this) women take care of things. We solve problems, we know what to say, we know what to do, who to ask and when to hug. As I relate the stories about my sisters and as I receive so many cards, supportive visitors and well wishes from my friends, I hope that I reciprocate in kind. I hope that I am as good a friend to my friends as they have been to me.

At the emergency meeting there was wine (green tea for me) and healthy snacks. A list of cell phone and e-mail numbers was put together to later become a spread sheet that included my kids’ information and my two best friends from high school. I was told to tell my family that I would never have to go to a doctor alone.
My friends asked me what I needed. How they could make me feel good. I told them “I feel good right now.” So it was decided that some outings were in order, a movie night, and even, the weekend in Michigan we had planned earlier.

As I sat there with my friends, I felt cared for. I felt surrounded by love and I felt invincible. Surely the healing has begun already.

the you-stupid-ass phase

I understand that one of the stages of coming to grips with a cancer diagnosis is the “why me” phase. I did spend some time puzzling over God’s opinion of how much I could handle, and I have checked the sky over my house for a black cloud. Nothing there.
The truth is I don’t wonder why me. I’m not surprised at all; I was a sitting duck.
News Flash: Being overweight increases the odds of getting breast cancer. There is a complex scientific estrogen-stored-in-fat explanation that I couldn’t begin to describe here, but I have read the blurbs countless times in women’s magazines. It is why I am always starting a diet on Monday. Alcohol isn’t good either, it feeds tumors. My bedtime beer was not helping my odds.
News Flash: Being inactive increases the odds of getting breast cancer. Walking the dog around the block apparently doesn’t do the trick.
News Flash: Having a family history of breast cancer increases the odds of getting cancer. Check.
News Flash: Being under stress can undermine your body’s defense system. Living with stress is the norm for me. When I am not worried about something, I’m convinced something is about to go wrong. And not all of these are imaginary stresses. Most of my worry comes from real, clinically charted stresses. Becoming a widow. Working during the day and going to school at night to become certified to teach. Being told after three years as a teacher that I am “not a fit for their needs.” Working three jobs to make up for no longer being a teacher. Spending the last three years in gentile poverty. Selling my house in the era’s worst housing market. Moving. It’s an impressive tally for stress on any scale.
So instead of the “why me” phase, I went through the “you stupid ass” phase. I was seriously pissed off at myself. True, I couldn’t very well avoid the family history. But everything else was my own damn fault. My weight, my inactivity, even the series of events that have made my life so stressful--all essentially related to my own failure and if it can be argued that they aren’t necessarily MY failure, then at the very least I have to recognize that I have clearly not dealt with my stress in a healthy way. (It seems there are two kinds of people: those who can’t eat when they are stressed and those who eat too much when they are stressed…)
In this “you stupid ass” phase I ranted and raved. I cried. I carried on. I was very angry. Then my older sister suggested that perhaps this way of thinking was counterproductive.
Oh.
And my friend suggested that what matters now is what I do from this point on.
True.
So for the 175th time I turned a new leaf, and it wasn’t even Monday. I went on the internet and researched the cancer-fighting diet. I cleaned out my refrigerator. Hot dogs, ham—anything with nitrates—gone. Processed foods—aka Trans fats—
gone. Ditto potato chips. Diet pop. And all the white stuff, no more freshly baked Jewel bread for me.
Then I went to the grocery store and explored the organic food aisle. I loaded my cart with fruits and vegetables and whole wheat bread.
And I called my friend, “What exactly, do you do with lentils?”

One in Eight

On a normal Tuesday in September, I walked the dog as usual at 6 A.M., thinking about what to wear to work. It promised to be a pretty fall day, so my major problem was whether to go sleeveless. It was sure to be warm by the lunch hour for outdoor recess, yet cold in the air conditioning of the classrooms. You can see the dilemma.
Once the dog and I returned home, I checked my email, ate breakfast and stepped into the shower.
And just like that my life changed.
‘What the hell?’ I had my finger on a lump. Not a tiny lump either, a how-haven’t-I-noticed-this-before-sized lump.
There ensued many phone calls; I called in sick, I called my gynecologist. Throughout the week there were doctor’s visits, waiting and then a mammogram, an ultrasound, and finally a needle-biopsy. There ensued more waiting and much praying.
I found out that I had breast cancer on a Friday while pacing in the school corridor, trying to get better reception on my cell phone. It was our lunch break. I had leftover pizza in the microwave and my new work colleagues sat stunned as I came in and sat heavily at the table wearing the news on my face. I’ve only known them a few weeks and this is pretty personal, serious business to share with near strangers. Stupidly, I went to get my pizza out of the microwave. As if I could eat. I was having trouble breathing. They sat and watched me try not to cry. They were kind and warm, sometimes meeting my eyes with sympathy, sometimes looking down at their plates. It was the consensus that I should go home.
I called my daughter in the car. She was calm and pragmatic, “Grandma and Aunt Boo got through it, and so will you.”
When I got home I called my sister. I told her I didn’t think I could handle it. She said, “Oh really? Exactly what does that mean? How do you plan to not handle it?”
Good point. Whining to my younger sister who went through surgery and chemo therapy just two years ago for the same kind of breast cancer, is perhaps not a wise move. And it only points out how un-unique this diagnosis is. Within the same hour that I discovered I had breast cancer, 20 other women were learning the same thing. Roughly 200,000 of us will be diagnosed this year. Which, whittled down to a neighborhood friendly statistic, one repeated often during cancer awareness month, is 1 in 8.
There ensued crying. I sobbed into my dog’s fur and she ducked her head into me to comfort me. I called my other daughter and my son. I called my mom. Then I called my best friend. She was over within moments. As the day passed into evening, more friends showed up at my door. My children showed up. Within two hours I had recommendations for surgeons and oncologists. I had assurances of well being and loving support.
And with my friends and family’s help I began to handle it.