Recovering From Radiation

At the end of radiation therapy last year, I was one exhausted woman.  I’d gained twenty pounds (a cookie?  why not a BOX of cookies?), and I felt estranged from myself.  I couldn’t concentrate on my work, and felt like I’d failed people and myself because of my difficulty even getting up in the morning.  It’s hard to admit I felt this way, because I believe that admitting things like this can make you sink even deeper into them.  (On the other hand, admitting it to yourself, and people you trust is a good thing — particularly if you do it while trying to figure out how to get over it.)  Although I had the incredible good luck to dodge more difficult breast cancers, it is still the case that an experience like this knocks you down. 

And I am here to report, on the other side of it all, as my surgeon said at my checkup yesterday, that life is not the same now.  My children are not the same people — they know I’m not invincible.  Like all things, that’s good and bad.  In the beginning, they clung more than they used to and seemed more reluctant than other children to be independent.  But I can see them relinquishing their hold on me, and feeling more confident that I’m not going anywhere.  We don’t talk about it very often — they don’t like to be reminded — but I have concluded that although you cannot control what happens to you sometimes, you are in charge of how you handle it and so the best I can do is show them, through example, how you recover from a physically difficult experience:    

A year out, these are the results of my recovery efforts: 

• Personal training.  Huge success.  I love going, love having someone keep track of my progress, show me the right way to do things.  Hugely expensive too!  I’ve reduced the number of sessions, and started training on my own.  Really, it didn’t have to be this expensive choice.  Any kind of regular physical endeavor — as long as you keep it up and try to challenge yourself so you can see progress — is one of the best things you can do to get over seeing yourself as diseased.  And even if you don’t think of yourself that way, it is one of the best things you can do anyway.  So do it.
• Writing.  I entered my novel in a contest — it was a finalist — and now I’m looking for an agent.  And I’m sending short stories out.  (And writing them too!)  Some interest.  Enough.   The lesson here?  Throw yourself into the thing you most love doing.  Make that garden grow.  Build that boat.  Join that choir. 
• Travel.  I must have decided, at some level, that the world must be seen.  I’ve said yes to every trip everyone has proposed:  Hawaii?  Sure, I’ll come to your conference.  Italy:  ditto.  France and England:  absolutely.  Lovely.  The lesson here?  Do not put things off.  I know this is a cliche.  But NOW really is the time. 
• Practice gratitude.  Say thank you again and again to people for the things they do for you.  It doesn’t matter if it’s cancer-related or not.  For some reason, letting people know that they matter is such a healing thing to do.  And it keeps you from becoming a grouch. 

But life’s not all a big plus.  There is more residual anxiety than I’d thought.  Yesterday at my six month mammogram I realized that I could get bad news again.  And my heart sank.  I worried.  It was fine.  But the worry is still there. 

There’s nothing to do, of course, but to keep going, and to keep going in directions that make you and your loved ones happy.  That’s really the story of one year out.

One Year Out

The other day I had a one year post-surgery appointment with Dr. Hwang, the amazing surgeon who did my lumpectomy. We admired my scar, which is pretty minimal, and my dent, which is impressively minor. I still have the suntan path across my left breast from the radiation, but that’s about it for the physical signs of last year’s experience. The lying-around-and-eating-bagels/chocolate/potato chips twenty pounds is gone. And it’s been a while since I’ve woken up in the morning feeling that horrible feeling of utter despair and sadness and hopelessness. I thought I’d make a list of the things that have brought me to this place because, well, just because I like to make lists:

• time. The further away you get from something, the more room you have for other things to fill their place. But you have to find things to fill that place that’re good.
• exercise. I have been going three times a week to a lovely gym, to meet Carin, the wonderful trainer, who follows me around with a clipboard and tells me to lift things, or throw them, or lift myself. I cannot say enough about how wonderful this is. But just as wonderful, and far less expensive, is hiking up the hill behind our house. The view from the hill of San Francisco and beyond is so utterly beautiful, and inspiring, that it makes you remember you are not that big of a deal in the universe. That’s a good thing, not a depressing thing.
• gratitude. It’s not enough just to have a general sense that life is pretty good. I am a strong believer in itemizing the things that make it that way. The weather in September, the appearance of beautiful pears at the Star Grocery, around the corner from our house, the enormous princess plant in our front yard, the fact that we have a new dog and he’s such a good boy.
• food. Sustaining, delicious, healthy, lovely food.

I’m a pretty regular visitor to UCSF — every time I’m there I feel so grateful to have been a patient at a place where everyone is so competent and some, like Dr. Hwang, are extraordinary. I’ve had two mammograms, and both are fine. In about six months or so I’m going to start taking Tamoxifan. I could have begun taking it immediately after radiation, but I decided to wait, and get in much better shape before taking something that has — anecdotally anyway — such unpleasant-sounding side effects. Dr. Hwang said this was just fine, as did Hope Rugo (don’t you think all oncologists should be named “hope”?) Anyway, I’m not just experiencing hope, but gratitude, a sense of perspective, and a couple of muscles I didn’t know I actually had.

Going Back

It’s taken me a year to unravel — to stop hiking, gym-going, thoughtful eating.  It’s taken me a year to become — at least on bad days — an ancient old woman. 

 I think I will have to remember that it took a year for everything to come apart.  And that it will take a year to knit it back together again. 

The Woman Who Cried “Tired”

A few days ago, I realized I’d been crazy to ever say I felt tired before. Because what I’ve experienced since Friday is something beyond tired, it’s a profound fatigue that makes me wish I’d never said I was tired — because now that’s a word I can’t use anymore to describe how I’m feeling.  I didn’t expect to feel this way.  I’ve always been able to keep going no matter how little sleep I get.  I guess I’ve just never felt so wiped out — with so much sleep! — before.

Let’s just say profoundly tired and leave it at that. Naps don’t seem to be helping. I wake up and I’m still beat. I’ve finished ten treatments. I’ve got twenty more to go. That’s a little more than four weeks worth. I guess I’m going to have to get used to being profoundly tired.

What’s Blue and White and Read All Over?

The left breast of a woman who’s been set up for radiation. (Not to put too fine a point on it, mine.) It’s blue because that’s the color sharpie marker the radiologist and her helpers use to mark up your breast so they can figure out where to direct the radiation. It’s white because, well, that’s what I am. Read all over? A stunning number of people (all women, all medical professionals) spent a stunning amount of time yesterday studying the markings and talking about them.

The whole time I was lying flat on my back with my left arm over my head, thinking maybe it would all go better if I could just sleep.

Oh, one other thing. Around the holidays, the preferred jewelry of fifty percent of the nurses I ran into turned out to be made out of Christmas lights. Earrings. Necklaces. Some lit up. Some not. You notice stuff like that when you’re flat on your back.

And I also want to mention that I now have four very small tattoos on my left breast. That they’re there to guide the radiologist amuses me. It’s never occurred to me to get a tattoo, but I’d have said if I did it would be voluntary and something a little more interesting than a dot.

The setup appointment was sandwiched between two research appointments. I like doing these studies. There are a lot of them going on at UCSF and they all aim to make life better for breast cancer patients. It gives me a lot of pleasure to think that I’m part of something like that, even if all I have to do is have my blood drawn or my arms measured.

And now, a little breather until next week, when things begin in earnest.

At the Spa, They Have Better Magazines

Don’t get me wrong, I’m grateful to whoever funded the nice waiting room at the Breast Care Center at UCSF, the one that looks like the place you sit while you wait for a beauty treatment at a so-so spa.

But you know, you’re not at a spa. Here are the clues:

• Bad magazines. At spas, you get to read Vogue, and Martha Stewart and People and In Style. Here, there’s a rack of magazines directly across from you and the selection is worse than what you get on Southwest Airlines when you’re in the C minus boarding group. (The one you’re in when you show up afater all the people in the C boarding group.)  Things like American Hunter (I’m not kidding), Golf (with a guy on the cover demonstrating a swing), and Tennis (Andre Agassi, farewell).
• The woman next to you is filling out a questionnaire in Russian, and she’s muttering things under her breath that don’t sound like happy spa talk.
• The chairs are really, really, really close together and there’s no fruit on the coffee table or tea in an urn to the side. You can hear the woman next to you breathing shallow worried breaths. Next to her, there’s a woman in a wheelchair who’s got an oxygen mask on her face. You try to maintain your privacy by looking up at the magazine rack and wondering why every magazine in it has a picture of a guy on the cover.
• The woman who comes to get you isn’t going to give you a massage. She’s going to smush your breasts into a machine that was not made for your comfort and convenience, but for that of the doctors who’re waiting to look at the pictures she takes.  The doctors who never even come out and say a word to you.  And she’s not going to tell you to breathe deeply, the way the nice massage therapist does. Nope. She’s going to tell you not to move and whatever you do… don’t breathe.

So I didn’t. Breathe that is. Next time, I’m bringing them some new magazines, so at least I have something to look at that’s sort of interesting. As for breathing?  I’m planning on doing more of it, even if they tell me not to.

You’re a 46 year old woman

After a three month break, during which time I unsuccesfully tried to schedule radiation at a facility closer to my house, it took one phone call to set in motion the most efficient medical process I’ve yet to participate in.

I don’t know if it’s like this everywhere, but the people who do the scheduling at UCSF, where I’ll be having six weeks of radiation treatment for breast cancer, are a marvel. They get you in as soon as they can, they have real live people with real live phone numbers call you, they look you in the eye most of the time when they talk to you and seem to get that you’re a person, not a sickness.

But even so, it’s quite obvious that the medical system is set up in ways that are not always good for you, the person seeking care. Here’s an example.

When I went in for my first meeting, a very nice young woman, a resident, took my “history.” Taking a patient’s history is a basic medical skill, one in which the doctor must be sure they understand who the patient is, what their current complaints are, and what their past medical issues might have been — all this with an eye to making sure they know the patient as a whole, so they don’t well… kill them by prescribing something they’re allergic to.

Given these goals, you’d think the person taking your history would ask you questions and listen to you speak. But this resident didn’t do that. Instead, she looked at me, and her notes, and told me who I am. It was a very odd experience and went something like this:

• She: You’re a 46 year old woman who didn’t feel a lump.
• Me (in my head): Why are you telling me who I am? I know who I am. You’re the person who doesn’t know who I am.
• She (glancing down at the chart): And you had first a follow up mammogram and then a biopsy.
• Me (in my head): well, duh.
• She: And… you blah, blah, blah,blah.

It was a remarkable, surreal conversation. And as it was happening I felt increasingly angry. Possibly, I am angry a lot these days because I don’t like being a patient. But what I really don’t like about being a patient was on display in this very moment. It was this: being spoken to in this way, by someone who’s suddenly so in charge of me that she can actually tell me who I am, is one way in which the medical care system takes power away from you. The ability to tell your own story is one sign that you are in control of your life. When someone else starts telling your story for you, well, that says even this most basic of things, your ownership of your history, is out of your hands.

And that is something I don’t like one bit.

I resist of course. I find myself taking the history of the resident and the doctor with whom she works in the way I wanted them to take mine. I talk about things we have in common: children, professional careers. I ask them questions about themselves, about where they’re from, what their hours are like. When I do this, I feel less and less like they are in charge of my life. I feel like it is becoming clearer to them and to me that they are in my employ. Not the other way around. I’ve hired them to give me something I need. I expect them to do a good job. But that doesn’t mean I am in their power. My history belongs to me, not to them. It is what I make of it, not what they tell me it is.

How do you Talk to Your Insurance Company?

I’m a lawyer. I know a fair amount about how you apply rules to facts and how you make an effective argument. But it’s very difficult to do that when the person on whose behalf you’re performing this work is… you. There’s a saying that a lawyer who represents herself has a fool for a client.

Perhaps this is why it’s taken me months and months to deal with transferring my care from my medical group in San Francisco to a hospital right here in Berkeley. This transfer would let me drive fifteen minutes, do radiation for fifteen minutes, and be home in fifteen minutes. (It’s a hospital that actually valet parks the cars of cancer patients who’re doing radiation and chemo. I wonder if they bring you a cup of tea?) If I stay in San Francsico, I’d be driving, or taking public transportation for about two and half hours a day.

The trick is that, in order to transfer from my medical group in San Francisco to the out of plan group in Berkeley, someone I don’t know has to be convinced the transfer is “medically necessary.” What’s funny is that when I asked how transfer requests are evaluated, so I’d know how to talk about my need to be seen in Berkeley, the woman I spoke to in the medical group acted like I’d asked her to open the envelope of the Best Picture Academy Award winner two days before Harrison Ford did. It was that bad. This information naturally belongs to me — but it didn’t stop her from trying to intimidate me into backing off and not asking. Apparently, you don’t actually get to talk to your insurance company. They just want you to go away.

How many people, I wonder, stop trying when they get that kind of response? I didn’t, but it took me about two months to give it another go. I wrote an email yesterday to my surgeon, with the text of an argument about why my transfer is “medically necessary.” She told me why it is, but when I offered to write it up she seemed very grateful. She’s too busy to do more than scrawl a few words on a form. This way, she’ll have a few paragraphs and I’ll have a better chance of getting better treatment… medically necessary treatment.

Again and again I wonder how people who don’t have the many privileges I do negotiate this system that really has almost nothing to do with securing their health and everything to do with making a profit. It makes me sad. And angry. But yesterday I talked to the insurance company in the voice of my surgeon: someone who cares about my health and knows how to safeguard it. And that felt awfully good.

Cancer Journal

What follows once lived on my blog, BlogLily, as a separate page. I’ve moved it, because I’ve come to a point in my treatment for breast cancer where it doesn’t seem necessary to write frequent updates about how I’m doing. I’m doing fine. I’ve had surgery twice, and am on to radiation therapy. I’ve realized I’m not sick. I’m different than I was when I started, but I’m not a cancer patient anymore.

This page contains a record of how things are going with my treatment for breast cancer. The kind of cancer I have is called DCIS — ductal carcinoma in situ. Because I have regular mammograms, it was caught early. It’s in only one place (that’s what in situ means), and it’s very treatable. There is the slightest of chances it might be in more places than that, but I’m not going to worry about the possibility. Sometimes, though, other people do worry (hello mom), and this is meant to assuage your fears in case you don’t feel you can call me to chat, although you are certainly welcome to do that. Also, should anyone else go through this, maybe it will be a good guide for them.

June 30, 2006. Insurance hassles.

Good thing it’s June 30th. Turns out, when you want to change your health plan from one medical group to another so you can be treated by people you have confidence in, your request doesn’t take effect until the month after you make it. Perfect, huh? My request takes effect tomorrow. Here are a few facts about dealing with the insurance people:

• 3: The number of hours I spent on the phone today getting my insurance lined up in advance of my appointment this Monday at 9:00.
• 29: that’s how many phone calls I made to shift from my old, incompetent medical group to my new, much better medical group at UCSF.
• 0: That’s how much help I got from my gynocologist’s office, the people who gave me my diagnosis and said they’d be delighted to help me in any way they could.
• High: My blood pressure.
• High: My level of outrage and anger about having to negotiate this system, but even more, about other people — with far fewer skills than I have — having to do this in the days after receiving shocking news.
• 2: The number of truly competent people who helped me, people who told me things that their companies probably wouldn’t have wanted me to know so I could more effectively work the system. That’s a lot, all things considered.
• 0: The number of times anybody cried around here about my diagnosis.

July 1. It was a perfectly lovely summer day today. My youngest son and I went for a long walk, to the library, to the burrito shop, by a yard sale, and then home. He took his scooter, and talked the whole way. At the yard sale, he bought one of those black messenger bags they give tech people at conferences. For one dollar. It was a good buy and he used it to put his library book and Indiana Jones dvd in. We’ve been talking a lot about the holy grail ever since. (How did Jesus die? What color was the Roman’s flag? Were they an army? Were they mean?)

At one point (I believe it was when I was on a street near our house where the trees form a canopy of green overhead) I thought to myself, “We only die once, for just a moment. But the business of living is so much longer than that of dying.” It occurred to me that I could let myself experience all the good things these slow summer days bring, and not cloud them with the knowledge that they will end someday. Even though what I’ve been diagnosed with is not a terminal illness, I think everyone who’s told they have cancer immediately thinks about their mortality in a way that is much starker than our usual thoughts about dying. What I learned today is that you can be afraid of dying all your life, and so turn your living into one long death — but that’s a decision you don’t have to make, a way of existing you can say no to. This decision is made easier when you see that you do a lot more living than you do dying.

July 2. Yikes. I should only watch the informational dvds the hospital gives you after I’ve had a lot to drink or while eating an ice cream cone. I know it’s meant to be reassuring, but the little graphic they do, where they show you the number of women who have lumpectomy and radiation and then have a recurrence of DCIS or the appearance of invasive cancer, is not a happy one. The figure that represents the 100 women in the sample is, well, a woman. And the ones who get cancer again are sort of lit up from behind, like the winners in a game show. (Picture a bar graph where, instead of bars you have women stacked on top of each other — that’s what the graphic looks like.) Instead of lighting them up, they might as well just put x’s through them, big red slashing x’s. I am sure I will be one of those women. Something like 18 out of one hundred really are those women. That’s a lot more than I thought it would be. Did I mention I’m sure I’ll be one of those unlucky ones? Aren’t we all? Still, I have no more time to record my anxiety about my appointment tomorrow with the surgeon, because I have, like, sixty zillion forms to fill out tonight — and it’s almost 10:00 p.m. Maybe I should do them in the morning, since I’m sure I’ll wake up at 4:00 a.m.

One other worry, and then I’ll stop: one of my older sons comes home tonight from a two week trip away, and he has no idea about any of this. He’s leaving tomorrow to visit my parents and my brother, and I won’t be taking him, as we’d originally planned. His nanny, a lovely woman who has been part of his life since he was five weeks old, is going to do that. He doesn’t know that either. Fortunately, she is a lot of fun and they love her very much, so I’m sure that part of the news will not concern him. But the rest of it is not going to be much fun for me to tell or for him to hear although his brother seemed to take it all in with an equanimity that was impressive.

July 3. As many of you know, my husband comes from a family of San Joaquin Valley grape growers. They’ve been farming in Lodi, California since the late 1800s. They grow the kind of grapes that go into wine made by the Gallo family — sturdy, dependable grapes. He’s a strong believer in the notion that it is healthy to have a glass of wine or two with dinner, every night. (Unless, of course, you have a drinking problem. We are lucky not to have been afflicted with that issue.)

At my appointment today the surgeon asked me to tell her if I drink and how much. Clearly, she was after “drinking issues.”

My husband spoke up for the first time.

“She doesn’t drink enough,” he said.

He sounded more concerned about my drinking than about the cancer. He told the surgeon I routinely fail to finish my wine at dinner. In his mind, this is a very bad thing, like being on a diet of potato chips and bean dip. Exclusively. Never eating a vegetable or fruit.

He sat back, looking like he thought she’d immediately whip out her prescription pad and write something like Must have glass of wine (preferably red) with good dinner every night. Sweet woman (in addition to being incredibly competent) she agreed with him that wine with dinner is a good thing. She did not write it down, but I think this interaction made him feel better. He’s aired this additional problem with my health and had a medical professional endorse his idea about the efficacy of wine with dinner.

But he wasn’t finished. He has a theory I don’t finish my glass of wine because we haven’t found the right wine for me to drink. At his insistence, after the appointment (which went quite well), we stopped off at Vino, a wonderful wine store in our neighborhood. He asked the guy who runs the shop, a knowledgeable man without a hint of snobbery, what a woman like me would like to drink. A woman like me, apparently, is a rose drinker (no, I don’t mean rose the flower, I just don’t have an accent key handy), but not the nasty kind of pink wine Neil Diamond is singing about in Cracklin’ Rosie, but a south of France kind of wine, a summer wine. This is what we’ll be drinking this week. It’s hard to tell from the labels, but they’re Spanish and French wines and they are each about $10. Not once did my husband complain about the absence of California wines. This alone is a clue to have fervently he wishes me to enjoy the health benefits of wine.

 

As for the appointment — I will have surgery in a few weeks. After a rest from the surgery, radiation therapy. There was a most inspiring air of confidence about the surgeon, Dr. Shelley Hwang, a Korean-American woman who was more competent than any single medical professional I’ve met in my life. I quite liked her. Clearly, she had seen many patients like me. Most likely, she said, things will be fine. I’ll wait until after they do the surgery and test what they find before I agree. Still, I’m an optimist and I’m going to toast that surgeon with our wine tonight.

July 5. My friend Kay suggested we have lunch today at Oliveto, a nice place near our house. She brought with her a get well gift so perfect I was pretty much speechless. Here it is:

Yes, you are seeing that correctly. It’s a book about enjoying life in a sensual way and a small box of dark chocolates made by someone in Oakland who’s recently opened a jewel of a chocolate shop.

I wonder sometimes how it is I stumbled into the life I’m living. Sometimes, I think I’ll wake up and discover I actually did not leave Tacoma, Washington, where I spent my unfortunate adolescence. Instead, I married my high school boyfriend who worked at the Rainier Brewery and I found a job working the night shift at Hostess Cupcakes. Not the worst life, but not the best, either.

Several times today, I also found myself thinking, this is an illness, not a spa vacation. But, in truth, it has elements of both. If I’ve been changed in the near term, it’s that I’ve decided to behave more sanely, a way of life we seem to embrace only when we’re near collapse and then only when someone else forces us to. Behaving more sanely seems to mean doing things that are good for me — eating dark chocolate, having trout stuffed with tapenade for dinner, eating tomatoes so red they have to be good for you.

And also, giving other people gifts, because nothing is worse for you than thinking everything in the world should revolve around you and your illness. In fact, I don’t think it’s so great to have so much focus on how I’m feeling. I literally felt like I was going to hyperventilate from talking about myself so much at lunch. Lightheaded, I could think of only one antidote: make a care package for my sister-in-law, who is recovering from a surgery that’s going to take some time to heal. This is what I made for her:

To be accurate, I didn’t make what’s in those packages. I foraged for it. A perfectly legitimate thing to do, especially when you consider that most of it is chocolate, but there’s a healthy amount of other good food, including things that will make it possible to put dinner together without having to do much.

To be in the company of such a friend as Kay, and to remember that there are people besides me to attend to has been the great gift of today.

July 7. Oh, I do so like the people at UCSF. I did have to call to remind them, but when I did, they immediately called back with ultrasound and surgery appointments. The appointments are this Tuesday, July 11 for the ultrasound and then right when we come back from Feather River Camp, the surgery will be on July 25. Perfect. The only thing I have to work on is making sure my radiation happens in Berkeley. That’s an insurance issue, and one I can start working on now.

July 14, 2006. I’ve been having odd and disturbing dreams about weird kinds of illnesses — lice, and bruises — except they’re not ordinary lice and bruises but really awful, apocalyptic lice and bruises. (Please don’t ask me to describe that.) I guess this is a metaphor that doesn’t take a genius to figure out. I know everything’s okay, but it doesn’t stop me from what I assume is a pretty normal uneasiness about how things are not always what you think they are. I also find myself not liking the feeling I get from some people (people I don’t know well) that they’re watching me like I’m half way across the river Styx. Waving goodbye. Take care of my boys, they hear me say, faintly, as I disappear into a puff of dry ice. I assume I’m wearing something lovely, but still, it’s not a vision I want to see reflected in the eyes of anybody.
July 11, 2006. I learned today that it is better to ask ahead of time where you should go for your appointment than to assume it’s at the place you last visited. Apparently the ultrasound department is unknown to the people who work at the cancer center — they sent me one place, that person sent me another, the third person finally sent me to the correct place — right next door to where I’d gone to begin with. I’m not complaining though. The ultrasound was intended to see if there’s anything else to worry about, beyond what’s already been found. The best moment was when the doctor had trouble finding anything to photograph, “I’d like to get an exemplary shot,” she said, “but this is the best I can do.” A few minutes later she came back, said there was nothing new there, and sent me on my way. So, all I have to worry about is the bits they’ve already found. And those are coming out on July 25.

July 18, 2006 Today at lunch, I was noticing how each of my three boys has some kind of ailment. A bee sting for one, another slipped and cut his head, the third boy has a blister. I’m the only one who doesn’t have a single ailment, I said. One of my older sons laughed and said, Mom, you have CANCER.

July 22, 2006. I know I’m repeating myself — but it’s such a good thing it bears repeating: the people who work at the Cancer Center at UCSF are wonderful. Someone has figured out that one significant source of stress for people recovering from cancer is dealing with the ins and outs of hospital visits. And so they make it easy for you. The waiting times are minimal, the directions they give you for pre-operative tests are clear. Everyone I dealt with seemed unhurried and competent. Even the single mix-up (about whether I needed an EKG) was untangled by someone who looked me in the eye, knew who I was, and explained to me what they were doing. And then I met with a lovely woman who was conducting a research study on some sort of problem breast cancer patients experience after surgery. It’s a problem that’s not life threatening, she explained, but one that causes distress to their patients. It seemed perfectly in keeping with the thoughtful ethos of this place that they are at work figuring out how to prevent this problem (a pain women develop in their arms after the surgery) by looking at who develops it and why. I volunteered for this study because I wanted to do something that wasn’t about myself during this time and because I wanted to feel helpful as well as helped. Imagine my surprise when she said you actually get paid to do it — $150!

As good as all this is, I am finding it hard to sleep at night and I feel distant and sad sometimes. I woke up this morning with an icky cold. I think no matter how optimistic you are and how good the people around you are, it is still a lot to take in and deal with emotionally. One thing that seems to matter is to set a bedtime and stick with it. Another is to make sure you have as much fun as possible in your daily life.

July 24, 2006. I’m loath to admit it because I’d like to keep things positive, but, in truth, I feel awful. I have a terrible cold that’s reached my chest, I haven’t been able to sleep, and it’s very hot and uncomfortable here. I feel like I’m in a bit of a fog — from the cold, and from a kind of anxiety I know isn’t rational but is with me nevertheless. I don’t like the idea of being operated on, in part because the biopsy was so horrendous and I sort of suspect that this procedure will be like that. So, I’ve vented. I don’t know if that’s therapeutic or not, but it’s certainly as close to the truth as I can get.

What am I going to do about it? I’m going to eat cold-destroying foods today — mostly in the form of liquid: lots of tea and orange juice and a nice green salad and some soup if I can figure out how to make that or buy it in all this heat. Unfortunately (for me only) we are going out to the San Joaquin Valley today in the afternoon to celebrate my two oldest sons’ birthday, which is today and it is very hot there. But I do like being with our family, and there is a lovely swimming pool, so maybe it will be nicer than I think. Also, being around happy children (and no matter how much they quarrel, my children are fundamentally happy people) is very good for whatever ails you.

July 26, 2006. The cure for the common cold is, apparently, breast cancer surgery.

I woke up from the procedure, wondering if they were about to start, only to discover they’d finished. And I felt like I’d just had the best night’s sleep of my life. It seems I’m such a lousy sleeper that I can’t get a decent hour’s sleep without anesthesiological intervention. But having had that decent sleep, the first thing I noticed was that my cold was much better. The second thing I noticed was how delicious a saltine cracker tastes when you haven’t eaten anything for a day.

In case I haven’t been clear, I’m feeling really good. On August 3, I have an appointment with the amazing Dr. Hwang, and then I’ll find out if there’s anything else to the cancer than what she suspects. And once that happens, I’ll go on to radiation and that’ll be that.

Except, of course, it’s not really. And that’s good. I can’t really say how or why, but I do know that many things have changed in the way I see my life since I received this diagnosis. And I’m pretty sure they are all for the better.

One thing I’ve been floored by is how many people have been so kind to me. Perfect strangers, like the nurses at UCSF. The people I work with who’ve been so loving and caring. My friends, and my family. The truth is, I never really considered how many people there are who make up the web of my life — or how kind they are. And I’ve been thinking a lot about how much I want to be on the giving end of that kind of generosity of spirit, having been on the receiving end so often in the last few months. How much pleasure there is from putting a package in the mail to someone, or saying thank you, or noticing that someone really could use a word or a book or a gesture and making sure it’s there for them.

I think it is in experiencing gratitude that we are able to then become generous ourselves. I never knew that. I’m grateful to have learned it this year.

August 1, 2006. The wonderful man I have worked for these last ten years came into my office a few minutes ago. I said something about being nervous about my appointment Thursday to go over my pathology results. He said, You know, even bad news is easier to handle than uncertainty. I wanted to hug him for being so clear sighted.

So, I have a teensy bit of anxiety about something I’ve been told not to be anxious about. (Another wonderful co-worker, who brought me the loveliest cookies from Citizen Cupcake (I can’t show pictures of them because they’re all gone) and who knows all about this sort of thing told me that when the news is bad they call you. No one’s called except my mother, and she always just calls to say hello and I love you. I should be okay.

August 3, 2006. It’s one of those good news bad news kinds of things. The cancer: not invasive. The operation: they didn’t get it all. There was more than they expected. It doesn’t change the prognosis, it just involves another operation (another one of those great naps, I guess.) Well, it could be better, but it could be worse. The operation’s in a month, the radiation is pushed off to four weeks beyond that. Yay for the non-invasive. Drat for the second procedure.

August 11, 2006. The second surgery is scheduled for September 5, 2006, the morning of the day we see the Oakland A’s take on somebody not nearly as mighty as the A’s and whose name I’ve completely forgotten. (Is it possible they could be playing the Cleveland Indians? No?) We’re going on some special deal where you get a t-shirt with the name of the A’s rookie of the year last year, Huston Street. That means we get five of these t-shirts. That’s enough to make up the entire wardrobe for one child for the school year, as long as we keep the stain remover handy.

I don’t have much to say about the surgery except to note that when the surgeon told me to make sure I got the first morning appointment it did not for an instant occur to me that her first surgery occurs at 7:30 a.m. That means you have to get there at 6:00 a.m. That seems a little extreme. Still, it gives me time to get a long day’s sleep in before I go to the Oakland Coliseum and claim my Huston Street t-shirt.

August 16, 2006. Here’s something I hadn’t expected: I’m tired a lot, even though I’m not physically ill at all. I feel paralyzed at the oddest moments, particularly in the morning. I think some of this is about waiting: waiting for another surgery, waiting for the radiation to begin. All that waiting makes me feel a little like a computer on sleep mode. It is also odd and sad to understand that your body, the one you’ve relied on and taken for granted, has allowed something like this to happen. I know that’s not really true, that there’s no blame to be assigned for this. But I haven’t been inspired to greater heights of physical purity at all by what’s happened. In fact, I’ve been wanting to ignore my physical self completely. Maybe that’s what the paralysis is for. And there isn’t a quick fix for this, I can’t just shake myself and say, “that’s it then, time to hike.” In fact, I am convinced that if this changes it will simply be because of time passing, of fears receding, of getting past certain markers. I think one day I’ll wake up in the morning and feel the way I used to feel. Just not quite yet.

August 20, 2006. My friend Debby was here for a few days. We bought this book at a local bookstore and then went to Oliveto and had dinner and cackled over it. The woman who wrote this book, Miriam Engelberg, is a genius. She is very right about some things: from the way people try really hard not to look at your breasts when they talk to you, to the fact that maybe you didn’t need cancer to change your life because your life was going pretty well already. She’s honest, funny and real, a true writer.

August 24, 2006. A couple of days ago I felt more tired than usual, sort of like a cold was coming on. Except it wasn’t a cold but a small infection from the surgery. I drove to San Francisco, where a very nice nurse took a look and wrote me a prescription for an antibiotic. I’m feeling more like myself, which is good. I am very, very lucky to have such good health insurance. The only bad thing is this: it’s unlikely that I’ll be able to do radiation therapy in Berkeley. Maybe the request to do this will be approved, but if it’s not, that’s a lot of driving to Mt. Zion hospital where UCSF is not terribly conveniently located.

August 29, 2006. My surgery on September 5 happens at 7:30 a.m., a time I’d much rather be lying in bed drinking tea. It’s also the day one of my boys has an orientation at his new middle school, and it’s a school day for our youngest boy. So, with only one parent, who’s going to be there when the children wake up, to get them breakfast, and help them make their lunches and take them to school and me to the hospital at the same time, since I can’t drive home from there? Well, it turns out we won’t have to bisect my husband because our terrific friend Nathalie is going to drive me to the hospital, while my husband gets everyone to school. And then, my surgery will be over well before school is out, so he can come and pick me up and take me home (along with our other son, who hasn’t started school yet.) And the son who’s at the orientation can go home with friends, I think. It’s very complicated being a person who’s responsible for people other than herself. I’m sometimes utterly panicked about it. Just yesterday, we forgot to pick someone up at a rehearsal for a concert he’s singing in — fortunately, he was rehearsing a few minutes from our house and called us to remind us to come get him. Still, I sometimes feel that we’re skating on the thinnest of ice.

September 1, 2006. Better. A new month. I like September, and back to school time, very much. It’s better than the New Year for making resolutions, because it’s a time when one generally feels like everything’s new and just beginning. And indeed it is. I’ll be finished with surgery in a few days and then all there’s to do is some radiation. I can do that.

September 11, 2006. I didn’t expect that last surgery to be as tiring as it’s been. Maybe it was all the codeine I took with a liberality I’ve only ever before used for good food. Maybe it’s just inevitable that the second time around, things will take longer to heal. Who knows. What matters is that I’ve been trying to take it a little easier. That’s not actually very easy. School began the day after the surgery and it just isn’t okay to be in bed while your children go off to school. But I have noticed they seem so loving and tender toward me. I hope it’s not because they think I’m going to die on them. I will be so happy not to be feeling tired and slightly off and once again be the mother who hikes up the hills with them. I don’t want them to think of me as a sick person anymore. For that to happen, though, I have to stop feeling like a sick person. Soon.

September 12, 2006. I’d just like to record that I’m no longer in the grips of all that codeine, which apparently hangs around for a while after you stop taking it, and I feel a lot more energetic and optimistic. Good thing. I’ve got a lot of work to do. Thursday, the 14th, I have a meeting with my surgeon and then after that a meeting with an oncologist. And then I’m assuming it’ll be on to radiation.

September 13, 2006. Yes, indeed! I’m feeling GREAT. What a relief, not to be queasy anymore. And how nice it is for everyone around me that I’m not creeping around, being grumpy and tired.

September 16, 2006. All’s clear, says the surgeon. On to radiation. How about that?
September 20, 2006. Yesterday morning, on my way into my office in San Francisco, I realized I was no longer in the fog I’d seemed to have fallen into when I learned I had breast cancer. This fog mostly seemed to involve eating a lot of mint chocolate chip ice cream, lying around reading, and thinking about mortality more than I usually do.

Actually it was more than just that. I also felt like there was a big black line that separated me from other people. On one side stood people who were well. On the other side was me. My side was on lower ground than theirs. The ground was boggier and there were more mosquitos. It was a miasmic spot. Foggy all the time. Not one in which you’d willingly take up residence. You get exiled there. Because you took birth control pills, or you don’t know how to handle stress. Or maybe it was those three cigarettes you smoked back in college, or the fact that you don’t laugh often enough. The residents of this side of the line are not happy, that’s for sure.

Late last week, I went to see my surgeon and got a good report. I’m off to radiation in a few weeks, a procedure that’s been explained to me over and over as being a belt and suspenders thing. There’s no cancer in you, but, man, after you do radiation there REALLY won’t be any. And the worst that will happen to you is that you might feel a little tired.

I went home after seeing my surgeon to people who behaved as though I’d won the Pulitzer Prize. It was that happy around here. Me? I kept wanting to say, not so fast, I’m actually still sick, you know.

I’m here to report that the revelation that I am not, in fact, sick, was a gentle one. It didn’t hit me like lightening. It came slowly, the way the fog lifts in the city. Many mornings on my way to work I notice what the fog is doing. And this morning it was nowhere in sight. And then I saw that I’m not a patient anymore. I’m not sick.

I went into my office and did more work in a day than I’ve done in three months. I don’t feel worried or queasy or angry. I just feel like myself. I just hadn’t realized I’d lost myself so thoroughly. But I’m certainly glad to be back. That page up top on my blog? The one that’s called “How It’s Going”? I’m moving that somewhere else. I’m done.