Re-Learning the Lesson

I worked really hard on my talk, and suffered over it.

First, I spent hours and hours writing about what I think gets in the way for people who want to reach out and provide support for Breast Cancer Patients. I wrote for longer about how much they (we) need help and in what ways. Most of what I wrote was yada yada yada and I cut it out.

Then, I was delighted on the day that I managed to sort out a few strong threads of information and wrangle them into a reasonable outline. It took two weeks for me to flesh out the outline and I felt stupid the whole time I was doing it.

It's hard to keep believing I have anything useful to say to anybody on this topic. Isn't that silly? Here I am writing this blog for months and months and I feel like I don't have anything useful to say? I guess the difference is, if no one wants to read the blog, they don't have to. They can stop and go do something else anytime they want.

But, if I do this talk, I'm inviting people to come and I'm promising that they'll get some value out of the event. I guess they could get up and leave if they thought it was stupid...but most people don't really feel free to vacate the premises in the middle of a workshop.

I try not to worry too much. I guess my hope is that I'll be brilliant and dynamic and will motivate people to break through their cultural habits of isolation. I hope that I'll inspire them to build strong networks that will continue to serve them in future times of crisis and that they'll increase the number and quality of authentic relationships in their lives. Maybe that's too much pressure to put on myself? (!)

After something that felt like a month of writing and organizing and editing and tweaking, I did a practice run with K. It was the end of the day. She was tired. She listened to it from the sofa, laying down like one of Freud's patients. She liked it. She thought it was good. She made some suggestions.

To my immense relief, she agreed that it might be useful to people. That's the main thing I want for this talk, workshop, whatever. I want it to be useful to people.

A few days later, after making K's suggested changes and putting together a rough draft flip chart, I did a second practice run for 3 friends. It was the middle of the day. They sat up in their chairs. They drank tea and ate food we enjoyed calling crumpets, though they were really just assorted pastries.

My friends made good suggestions too. I could make it more interactive. There are parts I can shorten. There are places I might introduce a topic shift more smoothly. I need to introduce myself and Breast Friends in more detail.

It was very good to get their feedback. Just as importantly, it was very good to get it over with. I stood up there and I went through the whole thing and I didn't faint and fall over from embarrassment at my stupid talk. That was how it felt before I did it...that I would feel so useless and awful that I wouldn't even be able to stand it...or even stand up.

But I feel better now. The packet of brochures and support information from head of the local Breast Friends Chapter came in the mail while I was in California last week. It's nice to feel like I have some concrete reference materials turn to. Also, during the last two weeks, while I was taking a break from actively working on the talk, but still thinking about it, I had some more good ideas about what to do and say.

Most importantly, I think actually being in California helped me relax. The idea of giving a stupid and useless talk still feels unpleasant, but not devastatingly so.

I think that's because I remembered that I am a full-grown functioning adult, capable of having a good job and supporting myself. It's easy to remember that in California, where there is a house furnished with nice things I selected and purchased for myself. It's easy to remember when I'm visiting my friends there, who met me and knew me as someone who drove a nice car, travelled a lot, and invited them out on my sailboat most weekends. Someone like that, like the person I feel myself to be when I'm there, could volunteer to give a workshop on community building, and it's just a cool thing to do. If it's excellent, it's excellent. If it's mediocre, so be it. Either way, it just seems good that I thought of it, that I worked on it, that I tried it.

But, here in Colorado, it's hard to remember that I'm a competent, capable, valuable adult. When I lived here before, I was mostly working minimum wage jobs and taking part time college classes. I rode my bike everywhere for 3 years. Then, for seven, I owned a string of semi-reliable vehicles that were donated to me by family, friends, and ex-lovers. I was always broke and usually in debt.

I'm not broke now, and I'm not in debt. But neither am I earning my own money. I've used up my savings. I don't have a car of my own. My sail boat is broken and parked on a busted up trailer than cannot safely haul it farther than 20 feet.

I don't have a job, much less a career. I don't even have any concrete plans for one at the moment. No matter how much I tell myself that it is okay to take a break, I still feel like a bum. No matter how hard I work everyday to wrestle this house into a functioning home for K and me and our various furry housemates, I still feel like a spoiled brat for not working at a "real" job.

This talk...writing it, giving it...has felt like an opportunity to prove that I'm actually capable of doing something worthwhile, that I'm not a spoiled bratty bum taking advantage of K's gentle heart and love for me.

Actually, "opportunity" is the wrong word for how it feels. It feels more like an exam, or a dissertation. But, instead of defending my work, I've been set to the task of defending myself, and my right to feel okay about myself on any day that I don't earn a paycheck.

Maybe feeling better about my talk, and myself, wasn't as much about remembering my life when I was employed, as it was about remembering my life right after I was fired. Maybe the magic of being back in California had to do with going back to the place I was at when I was learning the lessons that cancer had to teach me.

Those lessons were mostly about what is important in life: family, friend, each moment of being alive. And they were about what is not important: impressing the boss, fat paychecks, working hard at a job I don't believe in.

These things seemed so clear back in August. I can't believe I fell back into the trap of needing to prove that I deserve to feel good about myself. I guess I'll probably keep forgetting what's really important. Hopefully, I'll also keep remembering.

Maybe giving my talk will help me remember more often. Maybe it will help other people remember too. But even if it doesn't do a damn thing for anybody, I still think it's worth doing. I think it's worth taking a chance. I think chances are good.

Good People

One of the things I did, when I found out that B. had breast cancer, was take a basket into K's study and fill it up with books. They are K's books, not mine, but I recognized a lot of them. I pulled all the ones that I'd read and enjoyed once upon a time, even if I couldn't remember much about what happened in them. I took these over to B.'s house and let her choose the ones she thought might be interesting and upbeat.

In some ways, having cancer can be a real good time. For instance, it's a real good time to catch up on your reading. With surgery to heal from, and chemo knocking you on your ass, and all those overwhelming, terrifying feelings that make it hard to get out of bed in the morning, it's no problem fitting in a chapter or two every day.

I think I read more books last July than I had during the entire year of 2007. Maybe that's why I started writing. When you surround yourself with books it starts to seem like everybody is writing; like writing is the only thing really worth doing. Also, suddenly, I had the time. And a topic.

At first, I only wrote here, in my Double Whammy Diary. But later, I wrote in a journal too. I started setting aside 3 hours every weekday, just for writing. Most of what I write is garbage, just a step above word salad. Wilted word salad. I don't really know why I'm doing it. It feels good. It feels important. It feels like an act of faith that someday something good might come out of my hours at the keyboard. I might not recognize it if is ever does. I guess that's okay. There might be something good coming out of it now. I really don't know.

I told B. about these daily dates and she loaned me a book about writing. It is by Anne Lamott, whose work I've never read. The title is Bird by Bird. She says a lot of good things that I like to hear. She says to keep writing, even if you never get anything published. She says to keep writing even if no one ever reads your work. She says to keep writing even if you are terrible at it. I like this kind of encouragement.

But when she gets to the chapter about characters she starts to loose me. Maybe it doesn't matter, because I don't really want to write fiction and I don't need to worry about inventing characters. But I think what she said represents a world view that swamps us all, whether we are real live people, or a collection of words on a page.

Here is what she writes:

...you are probably going to have to let bad things happen to some of the characters you love or you won't have much of a story. Bad things happen to good characters, because our actions have consequences, and we do not all behave perfectly all the time. As soon as you start protecting your characters from the ramifications of their less-than-lofty behavior, your story will start to feel flat and pointless...

I think there was a time when I felt like that, that mostly the world lines up in an orderly stream of cause and effect. But what "less than lofty behaviour" resulted in B. getting breast cancer? What action of mine resulted in the consequence of having my right breast removed? This strikes me as a silly childish way of thinking. Isn't it time we all grew up and faced the fact that there is no Big Daddy up in the sky ready to take us out for ice cream if we are good girls and boys, or taking off his belt if we are bad. Things just happen. Bad things happen to good people and if there were such a thing as bad people, good things would often be their lot.

This may not be comforting. But it's liberating. When we finally get this fact...that we are already good enough, and that working to be better won't protect us...we might be able to relax, and finally enjoy all the blessings that are already ours.

Looking out the study window, I can see that it is a beautiful day outside. On the other side of the street, my rude and horrible neighbor can see the same beautiful day through her window. And I'm okay with that.

My Donation

Back in September, after a month of sending me letters and gifts in the mail everyday, C. had something even better delivered to my house...herself! I was healing from surgery and couldn't do too much. We stayed in and watched movies. We went for small outings in Los Osos when I had the energy. I was so happy to do things that didn't relate to having cancer. After a month of what felt like driving to appointments and procedures every other day, it was such a luxury to stay home, or in the neighborhood. We walked to the bakery, the coffee shop, the farmer's market. I don't think we drove into San Luis more than once that whole week.

When we did make that drive all the way into town, it was to go to the bookstore, of course. I don't remember what I bought at Barnes and Nobles that day. Trailrunner magazine? Spanish in 90 Days? I don't remember what C. bought either. But, we must have bought something because I very clearly remember standing in line behind her, waiting for my own turn at the check-out counter.

When it came, the young clerk asked me, had found everything I was looking for? I was happy to say that I had.

She asked me if I had a membership card. I didn't, but she let me use C.s card, which was nice.

Then she asked me, would I like to donate a dollar to breast cancer today? That's when I punched her in the face.

Well, no. Of course I didn't do that. But I felt like it for a moment. Not because I was angry or wanted to hurt her or anything. It was more like an automatic response to shock and surprise. It was like being in an old fashioned, slapstick cartoon. I felt like a bucket of cold water dropped on me suddenly from a atop a carefully propped door. I felt like I'd stepped on a rake and the handle just flew up and hit me in the face.

The surge of adrenaline flooding me at that moment moment was amazing. I could have scaled a building, or jumped over a river, or lifted a car. I could have done these things, maybe, if my entire right side hadn't been all wounded and sore.

I think this over reaction on my part was probably just do to the fact that I didn't want to think about breast cancer anymore. Finally, I had the luxury of NOT thinking about it. I was in pain and I was tired, but I was okay and I didn't have to think about it anymore! Until this young woman shoved it in my face without warning.

Also, I may have been irritated at her lazy and inaccurate grammar.

"Do you want to donate a dollar to breast cancer?"

"No thank you. I just donated my right tit to breast cancer. I think I've given enough for this year."

Beneath Notice

I've gotten used to being naked in the gym locker room. I don't worry about shocking people with my breastlessness anymore. If it's convenient, I'll throw a towel over my right shoulder and let it hang casually across my scar. If I don't have a towel handy, or it is getting in the way...I don't worry about it anymore.

So, when we went to Idaho Springs for a soak, I didn't even think or blink about being naked among strangers there.

The hot pools carved into the cave floor are sex segregated. I don't know what they do on the men's side, but on the women's side, we float naked and steaming under dark, dripping stone. Unlike the gym, it's slow and calm in the caves. No one is in a hurry to get to yoga on time, or blow dry their hair before they have to be at work. We all just melt into the stone and wait for the water to work it's magic on us.

Sometimes we talk. To the friends that came with us. To women from elsewhere. I had a nice conversation with a woman from Peru. She told me about her middle eastern husband, How they'd been married years ago and split. Now they were trying to work it out again. Cultural differences, she said, were the problem. She asked about me, my life, my history. We talked about breast cancer and mastectomies. She hadn't even noticed mine. After I showed her she said, "You know, they do really amazing things with reconstruction these days and your insurance will cover it."

Later, K said, "She just doesnt' get it, does she?"

"No," I agreed, but then I wondered what "it" is.

What is she not getting? That I think I look okay? That I don't think I look so bad that I need to be stitched and sliced in order to look better? That a problem she didn't even notice until I pointed to it doesn't seem worth the trouble of fixing?

Later in the day, K. asked me if I feel good about my body. I told her that I didn't feel great, but I didn't feel awful either. Mostly I'm just glad to have one that works.

I also told her that since cancer, how I feel about my body seems sharply disconnected from how I feel about myself.

Thank god, because shortly after that a horribly unflattering photo of me showed up in the Daily Camera.

Once you decide advanced technology makes sense for changing the way you look, for instance, on your scarred and bony chest, where does that reasoning stop? In that photo, I was far too pale ... with one squinting eye, crooked yellow smile and a double chin. Should I make an appointment for an artificial tan? corrective lenses? tooth bleaching? facial liposuction?

Or should I just relax and realize that, probably, no one even noticed.

Every Day

My mom started a nature writer's club. If I wasn't far away, I would go to it. Thanks to the Internet...I can still enjoy it even though I'm not a part of it. I visit their blog. I read the books on their reading list.

The first book was Always, Rachel, a collection of letters exchanged between Rachel Carson and her close friend Dorothy Freeman. (I think that's her last name. I'll check on it later.) It's a fat volume, and some of it is tedious. It's not a good starter read if you are not already familiar with Ms. Carson. I think you'd have to be head over heels in love with her to find all these pages interesting. I like her, alright, but I don't really know her well enough yet to be in love with her...so I skim through the pages.

There are descriptions of their tidepooling adventures together, but also of the days they couldn't go because someone had a cold or the plumber was late. Of course, later on in the book, Rachel can't do much of anything because she's battling against cancer. It's sweet to read how Dorothy sent something to Rachel every day in the mail while she had cancer. It's also sad and strange, and tragically poetic that this woman who worked so hard to make the world safer for all of us, who dared to speak out about the dangers of our chemical lifestyle, would suffer so? I don't know the timing of her life exactly. Did she publish Silent Spring before she started to get sick? Was she researching how pesticides are crawling through the food chain while her own body was turning against her...or did the tumors come later? I don't know.

I don't even know about my own timing, my own body. When did my tumors start to grow? What gave me breast cancer? Was it living near the power plants? (There is one on each side of Los Osos.) Was it poison in the bay? (My own house was one of the polluters.) Was it a karmic kickback from my job as a drug pusher? (How long can you dole out medicine before you have to take some yourself?) I'll never know.

It really doesn't matter. Whats the point of knowing how I got cancer, unless it's going to help me avoid getting it again? Maybe Diablo Canyon and Morro Bay and Boehringer-Ingelheim caused my cancer, but I love the Central Coast and I plan to live there again.

Even if it means I'll live a shorter life, loose my other breast, chance chemo and radiation...I am moving back. Even if it means I have to work again as a pharmaceutical sales rep, I'll go.

I decided that last week, after being on the ground in San Luis Obispo County for less than 10 minutes. In the airport parking lot, surrounded by mostly cement, I remembered like a flood. "This is home. This is home."

I called K the next morning and told her so. I told her, "this is where we belong." And she said, "I think so too."

But we can't move just yet. There are lovely people living in my house, and they're not ready to go. There are a million things we need to do in our own lives to get ready, not the least of which is...find jobs in San Luis. So I'm back in Colorado for now. Wiping my runny nose on my layered sleeves and crouching by the roaring wood stove. Watching the white snow blanket the brown slopes. Relearning that one warm week in March does not mean winter's over in April.

Since I officially moved her on the first of the year, I've been happy with K, and happy to reconnect with friends. I've been happy to go running with Piper, and happy to eat at my favorite local restaurants.

But, I have not been happy to be living here, looking toward a long life here. I feel trapped between these brown mountains and these browner plains. I guess I used to be happy enough to live here...back in my twenties, before I'd walked those green hills, before I'd touched a surfboard or owned a sailboat. But happy enough doesn't feel like enough anymore.

How silly I've been since January, trying to settle in here, when I know my home is elsewhere.

My thought process had been: 1. K owns a house here in Boulder, and I don't own a house anywhere. 2. K has a job here in Boulder and I don't have a job anywhere. 3. K has a loving community of friends here in Boulder, and because I lived here from 1994 to 2002, so do I.

But I forgot it takes more than a house to make a home. I forgot that jobs are changeable and that community is larger than the town in which you live. I forgot that I don't have choose between the two biggest happinesses in my life. Karen and California needn't be mutually exclusive.

Having realized all this, and made that decision, I find myself newly delighted with Boulder. It's a lovely town and I have history here. I charmed anew by the bike path along the creek, and freshly awed by the mountain peaks.

I ran into an old friend at the post office yesterday. I would not have her phone number in my bicycle bag now if I hadn't come to live here. I wouldn't have eaten a pop-over at Breadworks on Saturday morning. I wouldn't have seen the snow on the Flatirons Sunday afternoon. A thousand small pleasures and insights are mine because I am here. I'm able to enjoy and notice them now that I've removed the life sentence from myself and my little family. I can be here now, because we don't have to stay.

It's like we are on sabbatical. What a nice opportunity...to stay for a while in Boulder.

And how convenient the timing is! We just happen to be here in the same window of time that my good friend C. has landed here. She's in Denver for a few years, working on her advanced degree. It's no small thing, a chance to stay close to a friend like C. She's as good a friend to me as Ms.Freeman was to Rachel Carson. When I had cancer C., like Dorothy, sent something in the mail. Every day.

Her Word

I went to see Dr. Rocco while I was home in California. It was nice to see her, and all their staff too. They are so sweet and friendly and I feel like I belong to them. They were there to help me when I needed it. I feel like they saved my life. Doesn't that make me theirs, in a way? They act like it. It's always a nice day when I have a visit at their office, which is an amazing thing to say, considering why I go there.

Dr. Rocco, as always, made time to sit and talk with me. We talked about how I was doing, but about how she is doing too. She still hopes to get on Oprah and talk about genetic testing. Her young daughter is still interested in becoming a chef. We talked about Liz, the Care Coordinator and why she was having a rough time lately. One of her favorite patients recently died.

We talked about what it was like having only one breast. What I told her was, basically, I don't really mind. I've gotten pretty used to it. If I wear a sports bra and a t-shirt, most people don't even notice. When I dress up to look pretty, plopping Phyllis into my bra means I look just great. Naked, I still feel attractive. Now, I feel interesting too.

This is where it surreal for me. Dr. Rocco, the woman whose words fell out of her mouth when I told her I might not have reconstruction, began to tell me how important it was that women consider the option I had taken. She talked about how painful and stressful reconstruction can be. She described how many surgeries it takes before women are really happy with the shape and appearance of their new breasts. She sighed over the great number of women who never end up really satisfied.

Now it was me with no words in my mouth. What should I say?

I didn't want to insult her or drive any kind of wedge between us by suggesting that this was pure opposite to the attitude she shared with me before my surgery. I still rely on her to keep me safe from cancer. I didn't want to sound accusing or critical of her. I don't FEEL accusing or critical of her. I worship her. I think she's done the absolute best for me that she possibly could. She is so smart, kind, generous, capable, educated and competent. She so obviously cares deeply for her patients and does her very best to see that they are thriving. The fact that she didn't offer me options other than immediate reconstruction has never changed my opinion of her, personally or professionally. It has always seemed to me like proof of how intense the whole culture of breast cancer treatment leans towards pushing the miracles of surgery.

To hear her now, espousing the importance of giving women the choice to forgo reconstruction, or to consider having in later, made my head reel. I was delighted. This was exactly what I hope all breast surgeons tell their patients. "Slow down. Take your time. You have choices. Reconstruction is a complicated, intensive process and not a process to be undertaken lightly."

But I also felt suspicious. At first I was suspicious of her. Did she really mean what she was saying, or was she just humoring me? Did she realize what a change this was from her previous approach? Was she entirely stable? Or, maybe I was the unstable one. Did I really remember correctly what had happened in this office 9 months ago? Had she really looked at me with shock and surprise when I asked about the possibility of NOT seeing a plastic surgeon? Maybe I had made up that story in my head.

The fact that I started questioning my own perception of reality at this point just illustrates how powerful the impulse is to trust a physician's thinking over you own. The pull is especially strong when you've already put yourself in her hands, and feel like your life depends on her good decisions. To doubt her then, is to worry. That's one thing, as a cancer patient, that I've done enough of this past year. I don't want to worry anymore. I want to trust her. I want to know I'm going to be okay as long as I'm in her care. If that means doubting my own memory of how things happened and who said what, so be it.

Except that I don't have the luxury of dismissing my own accounts as distorted over time...because I write it all down.

So I grew angry. Why hadn't she given me this kind of advice? Why had she assumed I would have immediate reconstruction and attempted to design my treatment plan accordingly? Why didn't she encourage me to be brave and face the personal growth that comes with losing a body part rather than push me to risk the the knife and needle.

And then it occurred to me that maybe I was the reason for her changed perspective. Maybe working with me had planted a seed that was blossoming now before me. Perhaps, because of the choice I made and the way I explained it, her future patients would feel encouraged and supported no matter which of the 3 post mastectomy options they chose. Now, later and never might now all be fine times for her patients to get new breasts built.

How proud I felt! I wanted to protect this vision of change, make sure it wasn't a fantasy. I wanted to ask her if she made a point of sharing this information with all her new patients. I wanted to ask her how she introduced the topic of reconstruction to women facing mastectomies. I wanted to know that she wasn't just talking this way to me, trying to make me feel better about not having a right breasts.

But, I didn't ask her. Again, I didn't want to insult her. I didn't want her to feel like I was judging her or doubting her. I can't risk making her mad at me. I still feel like I need her too much.







.

Ahoy Matey

It is still weird to just have one lonely breast inside my shirt. But, I am getting used to it. Now, when I am naked from the waist up and doing the kind of business-like things one tends to do when topless...trimming toe and fingernails, cleaning my ears, flossing my teeth...I sometimes catch a glimpse of myself in the bathroom mirror. I still look damaged, injured. But, it's also clear that I am fully recovered and there's something about that that makes me feel strong and happy. I look like I've lived through things. I look interesting.

I look like a pirate. My missing body piece invites a tale to be told. Swordfights! Crocodiles! Aargh!


I look like an Amazon. Which, to me, means that what I do with my body is more important than how it looks. (Which, of course, is always true of everyone, regardless of whether or not they believe it.) And how it looks is ... like I can do things with it. Shoot an arrow. Out run a horse.


I can't really do either of these things. Fit and well running humans CAN out-run a horse, I've read. But it takes about 20 miles before the two-leggers pull ahead. The longest I've ever run is fifteen. What that means is, with practice, I could outrun a horse.


Also, with practice, I could use a bow and arrow. K already has some. She and our freind A. had them out for target practice last weekend, while I was in California. Maybe I'll choose a 20 mile race to train for this year. And, maybe, after I've run it, I'll add "excel at archery" to my list of things to do.

In the meantime, I'll just enjoy feeling like a pirate. In my head I'll keep designing clothes that flatter and exentuate my asymetry, rather than conceal it. I'll keep laughing outloud when I imagine the shirts and dresses with an eye patch pattern across the chest.



.