I Continue Down

Today I find myself more down than when I last wrote here. Why now, when my prognosis suddenly seems so good? I am being ungrateful, especially when I think of those who are diagnosed at Stage 4 and must hold onto every year as a blessing. So what's wrong with me?

Yes, I feel as though a bullet chased me down the street and I improbably managed to duck. But that in itself makes me feel unsafe, like walking in a bad neighborhood and waiting to be stabbed. Also, transitioning out of crisis mode has freed me to think of lesser problems that had to be put aside before. It must be that way when soldiers finish a battle: then they realize they're cold and wet and hungry.

I have said over and over that I "just want to get back to normal", to "resume" my life. And on the surface, I have. I'm working again, and starting to write the book again, and have begun to be able to talk about other matters besides cancer when I see family and friends. All that is undeniably good. But in another way, I don't feel normal, and it doesn't feel that I've just turned back the clock or put the train back on the track after a temporary derailment. I think I felt that way after the first cancer, once chemo was over. I actually may be more shaken now than I was then! Really, twice around feels like too much, especially when I look about me and see that most people never get on this merry-go-round even once.

My mood may be partly because I find I am still in pain..or call it discomfort. It had gotten so much better by a week after surgery that I pretty much thought I'd be fine by now, two weeks later, and instead it seems to be taking its sweet time to go away. So I'm conscious of that body part all day (and when I'm not asleep at night) in a very unpleasant way.

Then too, I'm mentally in a state of discomfort, conscious of some deep alteration that feels more disturbing than the cancer I had eleven years ago. I didn't feel monstrous after those surgeries, and I sort of do now. It's not just the lack of nipple...that doesn't bother me as much as the whole appearance of the thing. And I do think of that poor battered and mutilated breast as a "Thing", sadly enough. Yesterday and today I couldn't stop wondering if any of my clothes will look okay, and that I will surely need to ditch my tank tops and bathing suits. I can't tell you how bad that unimportant idea makes me feel. It's very odd.

I had a dream last night: I was cutting the arms off very small dolls. That is, they seemed like dolls, but they were alive. I wasn't being violent and I wasn't enjoying it at all: I was doing it for their own good. Gee, where do you think that came from?

As I said, kind of feeling down.

The Path Report, At Last

I did decide, after all, to call every day to see if the pathology report was ready. This shows, I guess, that when I have a conscious choice to know the truth, I will choose to know, whereas unconsciously I have sometimes been a champion denier about my own life. (The prime example that leaps to mind is the belief I cultivated for many years that my marriage was a happy one.)

As for the path report, which was supposed to take the classic 7-10 days, I was told it was "not available" on Day Seven or Eight, and Day Nine, the snowstorm hit New York and the doctor's line didn't get answered at all. So that brought me to Day Ten, when I had my post-op check-up with Dr. C, the surgeon, anyway.

Anxiety built during those last three days, I'll admit. My fantasy was that the report was in, but was so bad the doctor wanted to give me the news in person (even though I was told all the bad news over the phone at the time of the first, invasive cancer, from the same doctor's office). Fortunately, I didn't really believe this -- I do know I'm susceptible to this kind of "What if"-ing. But when Dr. C. strode cheerfully into the examining room on Friday morning and greeted me with, "Hello! How are you feeling today?" I wanted to yell, "Cut the crap and tell me how the path report was, please!"

I'm well-behaved and didn't, and right after, he said, "Well, the path report was good..." -- "It WAS?" I cried, but he went on, "But I do need to go over it with you." Never a good sign.

First we admired his handiwork, which really is quite amazing (more on that another time), and then he showed me the detailed report. The good (going on fabulous) part: no invasive cancer found, DCIS (ductal carcinoma in situ, which means localized) only. The not-so-great part: three margins were nice and clean, but one showed a little bit of DCIS half a millimeter from the margin of the incision. "Clean" margins, the ideal, are more than a millimeter (which is damn small, if you look at a ruler). The point of clean margins is that the chances of having missed a patch of cancer cells is better. His comment: "Some of my colleagues who are conservative would say this requires re-excision [i.e. another surgery to take more tissue, as I had eleven years ago], but my judgement is that it's a low enough risk that we can stop where we are and just monitor it."

Oh. That was deflating, and a little scary. I wasn't sure how scary, so confusing, too.

He went on to discuss the possibility of radiation ("This hospital has been experimenting with re-radiating the same breast but the benefit seems very small, so let's set up a consultation with a radiologist for you to discuss the benefits and side effect"). I asked about going back on hormone therapy, and he thought my old oncologist should decide that. I was given three more appointments in the next month -- radiologist, oncologist, and another check of the incision by Dr. C -- and sent home.

Calling my family to tell the good news was excellent. But I didn't tell my children about the "dirty margin" (as they call it), though it's always tempting to share every single feeling with them. Dr. C. said the risk of recurrence was low, so why trouble them with this vague possibility if I'm not going to have more surgery? And it gave me such pleasure to hear their excited voices when I told them the report was good.

On the other hand, while the percentage of recurrences is low (I think he said 3%), the percentage was also low for getting a recurrence eleven years ago, not to mention for getting Paget's Disease (only 2-5% of breast cancers), or even getting breast cancer at all (I'm the only one among my friends who has had invasive cancer). Here I'd been hanging all week on Good (a fine path report) or Terrible (a bad one), and this leaves me with more mixed feelings than I thought I'd have. I've noticed life is like that so often: just when you think it's a drama of Yes or No, Good or Bad, What I Want or Don't Want, it turns out to be more complex than that, no simple denouement.

And so this morning I woke up feeling down for the first time in quite a while...how odd that in the last weeks of anticipating surgery and the path report, I have been very anxious but quite cheerful, not depressed at all...I suppose because something was always happening next, and there was always the hope that good news would make it all go away.

Do YOU Want to Know?

It's a funny feeling: as I get stronger and feel more "normal", part of me wants to forget it all (in spite of my weirdly un-nippled breast, which I still have not seen bare) and part of me feels I'm walking on the edge of a cliff, waiting for the news from the path report.

I find myself making plans for the summer and then catching myself: maybe I'll be having chemo then and those unfulfilled plans will make me feel bad. I've just got to know everything is "all right" -- at least, as far as the doctor can tell -- before I can be normal, whatever that is.

I called yesterday with some trepidation, and was told the report was not back yet. The nurse said I can wait for my post-op visit with Dr. C, the surgeon, on Friday morning, when it will definitely be ready, or I can call today or tomorrow to see if it's in before that. I doubt they'll bother to call me, so I feel I have to decide: how much do I want to know this news now?

Remember that old dorm-room question (not that I ever got to have a dorm room), Would you choose to know the date of your death if you could? My answer would be a resounding No. I'm prepared to live with a certain fogginess over the pain of mortality. On the other hand, it's been in the news a lot lately that if a test is developed that predicts Alzheimer's in an individual, some may prefer to know the results even though there is presently no treatment for it. I'm one of those...and I've thought about it because my mother, her father and two of her sisters died of Alzheimer's, so that pushes me on the more likely side of the genetic probability scale. And I'd like to know, horrible as that would be, for a pragmatic reason: I could make arrangements for my children to take over my finances and decisions when they see the early signs.

What's at stake in the path report is not -- at least, probably not -- as dramatic as death and dementia, but a bad report would sure disrupt my life and bring me stress and pain in the form of a mastectomy. The last few days have been the happiest since this bad dream started in December: the surgery is over, not in a lot of pain, I'm out in the world again, and most of all, back at work. If I choose to know early and the report is bad, I will have forfeited a few days of peace and contentment; on the other hand, underneath everything, the presence of those dark possibilities taints it all. And if I find out the report is good, I can be free of that. So I'm not sure what to do.

I am a Bitch with Cancer

I swear, breast cancer No. 2 is turning me into a bitch, or else bringing out the bitch that has always lurked within.

I am so tired, for example, of people telling me "it's going to be fine." Here's today's conversation with a colleague who just learned the news and called to get an update:

Me: Blah, blah, so the path report should be ready this week and I'm anxiously waiting for the results.
Colleague: Oh, I'm sure it'll be fine...
Me: Please don't say that! I hate when people tell me everything will be fine when you don't actually know that. [Lamely, feeling guilty at my aggressive tone]..I mean, it's the evil eye thing, I guess..
Colleague: I didn't say it will be fine, I said I hope it will be fine.

Now, gentle reader, she lied, whether purposefully or unconsciously. Because I distinctly heard her say "I'm sure", and "I'm sure I hope it will be fine" makes no sense at all. Normally I'm far from confrontational and would have dropped it, but instead I stuck my metaphorical chin out and said "No, you said you were sure it would be fine. The thing is, if the doctor wasn't sure it would be fine, how could we be?" Note that I softened it at the last minute by saying "we" when I really meant "You, idiot."

I think I've illustrated what I mean by my new level of bitchiness.

Why does this piss me off so much? Hmm, let me count the ways: mostly, it feels dismissive.."Don't feel bad because then I don't know what to say, so let's just wrap it up with a note of positive thinking, and we're on to the next topic!" Then too, maybe it IS the evil eye thing, ingrained from childhood: never-never-say-anything-will-be-good, because you're provoking the gods and they'll make you pay. (You can see I'm from peasant stock.)

I feel bad about my poor colleague, who is both very nice and nice to me in particular, and I hope I didn't make her sorry she called. You may be curious how she handled my mini-assault: simple. She changed the subject, which is no doubt what she wanted to do anyway.

Healing Well

So pronounced the nurse, after I squeezed myself into her schedule and waited an hour to see her. This is because it's Friday, and I knew that if I didn't have a professional look at the wound, I'd worry that it was infected all weekend. Many, many times -- diverticulitis attack, various UTIs, children's ailments, and of course, the diagnosis of cancer -- conditions for which you need to see a doctor have occurred on the weekend, or just before a major holiday...just my luck, right?

I was already downtown on my first subway trip (complete with transfer at 42nd St) since surgery, to copy the syllabus for the first day of class on Monday and meet with a grad student who wants to do an Independent Study...pretty much on sex, but okay, sure. I felt lousy, and as the day went by, I had convinced myself that I was running a fever. Nope. The sweet and very efficient nurse took my temp and took one look and said everything was going well, and I just need to rest. It's common to feel worse after the first day or two, she said, because the immune system has kicked in after the first shock and is causing all the discomforts in the area that I'm experiencing, like redness, swelling and stinging. Interesting.

I came home to the comforts of a cable box that is up and running, after a serious diagnosis of TOO MUCH CAT HAIR in the mechanism by the technician. Not sure exactly what to do about that. The culprits don't go near the cable box, but their hair sure does fly wantonly about the room and lands everywhere. If I could sell loose cat hair as an accessory, I'd make a fortune.

So nice to nestle under the electric blanket and watch my electric boob-tube. And no pun about boobs intended.

Two Days Later

Only two days later, and my spirits have bounced back. My daughter C. firmly told me to have some perspective ("It's only been two days since surgery, Ma, give yourself a break, it will get a little better every day, geez...") -- usually my other daughter, A., performs this necessary task, but C. is quite good at it too -- and sure enough, some energy came back yesterday. I went further afield for breakfast, and actually got some teaching preparation done. And last night was the first since before surgery that I didn't have raging insomnia.

Also, I'm not in pain any longer, though the poor beaten-up breast is pinkish and swollen tight, just as when I had an infection while nursing babies. The nurse I called said this could be normal for recovery, but I must watch and see it doesn't get worse.

And I worked the phone and had the cable appointment moved up to this morning. I am now sitting here waiting for Cable Guy, who will arrive at the last minute of the designated window, or not at all, if the past is any indication. I guess you could say that's part of life returning to normal?

I am Ridiculous, Post-Op Version

Yesterday I had the surgery. I set the alarm for 5 am so I'd have time to take a second shower with some super-germicide as ordered, then appear at the hospital, about as far east from my place as you can go in Manhattan and a couple of miles downtown, by 7 am. Instead I woke at 4:45 after little sleep, as if I knew what was coming. After the shower, I walked rapidly through the ghostly, snowy dark (how empty the streets are at 6 in the morning after a snowfall!) to the subway and then the bus, arriving at the hospital half an hour early. It was oddly comforting to see how busy the hospital was at 6:30 am, staff going in and out chatting on cellphones or walking with quick steps down corridors.

From there it went like clockwork, as it pretty much always does at Sloan-Kettering; they have their firm routines, and you're pushed along the required stops on the road with beautiful precision. To my joy, I did not have general anethesia; instead I was given Propofal (if that's how it's spelled), the Michael Jackson drug. I did not even count down...the last words I heard were, "We're just giving you something to sedate you first." There was no second as far as I could tell, and I woke up feeling remarkably well, considering. Big elastic bandage around my chest, but couldn't see beneath it, and still haven't really looked, so nothing to get upset about there. I'm saving that for later.

My dear daughter C. picked me up on time, stuck me in a taxi for a damned expensive ride, and by midday we were at my table having tea, toast and jam before she had to return to work. I was almost euphoric: It's over! Then I popped one of the Vicodin and basically slept dreamlessly on and off the rest of the afternoon, evening and night. In between bouts of sleep I ate the chicken-and-cornbread pot pie I'd thought to make the day before. So far, so good.

But I woke this morning in the lowest spirits I've had since the diagnosis in late December, basically spent an hour or so mopping tears. The pain had worsened over the course of the day, and I realized when I woke up that it hurt more than yesterday to reach things, or pick things up (like the flowerpot one of the cats upset in the middle of the night), or wash dishes. I didn't have to get up for any reason, so I lay there exhausted, in spite of all the sleep. Then the anxious thoughts began:

1. Now that I've experienced this relatively minor out-patient surgery, I'm more afraid than ever of the more extensive surgery with general anesthesia I'll have to have if the post-op path report is not good. Sure, that's now unlikely, but that's what I was told at other times...So unlikely that the sentinel node will be malignant! Odds are that the altered appearance of your nipple is nothing at all! If there's one thing I've absorbed from this, it's that unlikely things do happen.

2. My daily habit is to leave my apartment as soon as I'm dressed, rain or shine, work or no work, to have breakfast out while I read the paper. I don't really feel the necessity of this when I'm a houseguest at someone's spacious home, so it must have to do with a kind of morning loneliness or claustrophobia, or both. In spite of feeling pretty awful, I did get dressed and went out today, only to feel dismayingly weak and invalid-ish. Basically I had the gait and strength of a ninety year old woman. Yes, that's to be expected 24 hours after even out-patient surgery, but it brought back very unpleasant buried memories of feeling that way for six solid months during chemotherapy eleven years ago.

3. This led to lots of self-pitying thoughts about being alone. In addition to Real Estate Envy and Good Health Envy, I felt a bad infusion of Partner Envy. How well that must work: you have someone by your side who by institutional imperative (at the least) is obligated to take care of you, or better yet is impelled to do it by their emotional investment in you. You have a claim on them, very different from a relationship with good friends who are being kind (your grown kids have a deep emotional investment, but if they have young children of their own, as all three of mine do, their main obligations are elsewhere). And if you live with your main squeeze, you don't have to feel that you're burdening him or her too much. That's how the partner system works, but it hasn't been there for me for many years.

4. As one of their little jokes, the gods decided to render my cable box completely dysfunctional last night, so the comfort of holing up in bed (and there really is no other place to hole up in my studio apartment) while watching amusing stuff I'd saved for this occasion was trashed. This is a new cable box, installed last summer -- what amazing timing. No TV at all till it's fixed, and of course no appointments to fix it are available for days. I could read, but my head is foggy and the programs on my DVR would have been just what the doctor didn't order.

Yes, this is all mostly silly, made larger by lying in bed feeling sorry for myself. Big deal: I thought I'd work intensively on the book this month and that's not possible. So there's no partner to hover over me and bring me tea and pick up the dirt from the plant that the cat sent crashing at 3 am. So I'm not my usual energetic and curious self the day after surgery and feel both restless and also unable to do anything to entertain myself now that the cable box is sitting there dead and useless. At this point, I'm alive and haven't heard anything different. And I long ago decided that I'd rather take care of myself than live with a partner I'm not downright crazy about. Plus there's a fair chance I'd have to be the partner who takes care of the other (given my luck), which sounds much less appealing.

One step at a time, to paraphrase the useful advice of AA.

I am Ridiculous

If you've read this blog at all, you may have picked up that I often tend to worry about small things when I'm really worried about big things. Tomorrow is my surgery, but I really wasn't anxious about it today...instead I gnawed on my fear of the fasting you have to do the day of surgery. Yes, I hate any kind of fasting, including hunger when a dinner host makes you wait hours before you can sink your teeth into anything filling...the sort of thing most people don't mind (or at least appear not to mind) at all. My dear friend G.R. used to skip lunch regularly to maintain his weight; I viewed him as a kind of alien species. I can't remember the last time I voluntarily skipped lunch or any other meal. It's not in my repertoire.

I suppose this comes from deep, dark neurotic roots...lack of nurturing, self-comforting instead of maternal warmth and so on. But who cares? I'm not overweight, and I like to eat. Period. It's all about pleasure, people, and avoiding pain. I'm a Utilitarian.

So when I learned that I have to be at the hospital by 7 a.m. I was overjoyed rather than annoyed that I have to get up at the crack of the alarm clock at 5 am or so. This afternoon I happily made a cornbread-topped chicken pot pie from scratch to eat for the next few days. And I strongly feel that since I won't be eating till the afternoon tomorrow, I should not put limits on the amount of chocolate I eat tonight. There's got to be some fun in all this.

Surgery Looms

I met with the surgeon on Friday and had various pre-op tests (blood, X-ray, EKG) performed. Memorial Sloan-Kettering is a well-oiled machine; you are tunnelled from office to office, where a kindly nurse or technician takes you through exactly what you must do and what will happpen. As unpleasant as it is (the depersonalization, no matter how well-meant, the technologies, leave-your-clothes-here, recite your name and birth date), there's also a kind of comfort in it: they've done this thousands of times and they know exactly what they're doing.

Dr. C., my surgeon, exudes professional competence and calm. He will change the breast shape as little as possible, since the MRI result was so good...with the small exception of that nipple, of course. The surgery is outpatient, and aside from a bit more rest than usual, I should have a quick recovery and can go back to work in a week, JUST in time for the first day of classes, coincidentally. All this was reassuring.

But then he said: There's a 90% chance that we will find nothing more, as the MRI indicated. But we won't really know until the post-op pathology report comes back, 7-10 days later. Even an MRI isn't a hundred percent reliable. If the path report shows more cancer than we thought, we'll have to go back in and do a mastectomy.

Oh. So that provokes more anxiety. I'm almost there, but could be stopped in my tracks, as when it turned out that the sentinel lymph node was malignant eleven years ago. The odds were against that too. The result of that was five months of chemotherapy and a much bigger, more painful operation.

But keep the spirits and optimisim up. Worry isn't going to make it better or worse.

Lucky/Unlucky

My poor father, born in the mean streets of the Whitechapel district of London to an impoverished tin peddlar and his illiterate wife, used to shake his head bitterly when something bad happened and cry, "Goddamn-stinkin'-rotten-lousy-LUCK!" Naturally, that meant he had none. And the truth was, he didn't have a lot, but probably could have made more of what he had (or at least that was my mother's view).

So it's no wonder that a theme of I've-got-bad-luck runs through my life. It's so pervasive as my complaint, my fear, my attempt at manipulating the gods through guilt, that I smile when I hear myself thinking it. "Oh, poor you," mocked a therapist once, "As if whatever happens that you don't like is just luck." Her big theory was that I was mentally cowardly and lazy, dooming myself to self-fulfilling prophecies when I should be upbeat, positive and optimistic about my bright future. Which would get me nowhere, given my lousy luck.

What happens when a hypochondriac gets sick is similar to what happens when the bad-luck girl gets a diagnosis of cancer for the second time, out of the blue. It feels like the gods are picking on her...as usual. Take that, therapist; did I deserve this? Did I?

Yes, poor me, dammit.

Part of my luck fixation is a (yes, I admit it) irrational envy of those who have good luck. This might take the form of inherited money, but usually centers on acute Real Estate Envy (which shows I'm a New Yorker): the rent controlled or rent stabilized who happened to stay in the right place at the right time, or the recipients of gifts from well-off parents. They never seem to ask or doubt whether they deserve this largesse. Because here's what's odd: I don't at all envy those who accomplish or achieve by being smart, talented, or hard-working. I see the justice of that and don't begrudge their prizes and acclaim, even their financial rewards. I don't even envy the beautiful or the young; I consider that almost a fleeting kind of talent, or at least a state of grace.

The form my irrationality takes right now is Health Envy: I look around at everyone I know who is my age, and overwhelmingly, I see healthy breasts and people with minor complaints who bitch about them endlessly. There are friends who rarely or never go to doctors -- and have absolutely nothing wrong with them, who never even get bladder infections. Why?

And then I think of the exceptions: a childhood friend who was diagnosed with Lou Gehrig's disease and died this year after only 13 months of (terrifying) illness, or a friend's wife whose multiple sclerosis is getting worse. It all seems to come down to...luck. Good luck, or bad. And which was mine, if I get past this roller coaster month and live?

Surgical Insomnia

I must be getting anxious about the upcoming surgery, even though I don't expect it to be difficult. Last night I woke at 3 a.m. and tossed until 6 a.m., when I briefly fell into dreaming about anxiety-filled situations, e.g. I was taking care of a grandchild at the movies and when I came back to our seats from getting him a snack, he wasn't there. Freud? Meaning? Ah, you say we don't need Freud for this one? You think?

I'm always amused afterward by the kinds of thoughts I dwell on when I have insomnia in the middle of the night (as opposed to not being able to fall asleep, when my mind is more ordered). What I was thinking about at 4 a.m., for example, was not death but a)how much I dread fasting before the surgery, and b)what I'm going to look like in a bathing suit, and whether I'd have to wear one without cleavage for the first time in my life. I'm going to have to buy a new one, and I hate shopping for bathing suits, I remember saying to myself petulantly. Not exactly a Jean-Paul Sartre level of cognition about being and existence. And it doesn't help at all to tell myself that I shouldn't be sweating the little stuff. Because at 4 a.m. it doesn't feel little, period.

The Knife

I don't really understand how people can bear to be surgeons and cut into flesh, even for life-giving purposes. I suppose Dr. C. will not think of himself as cutting off a nipple so much as cutting out the bad stuff, the killer, though both are true.

It's all scheduled now, down in my calendar: this Wed., pre-op meeting with surgeon and tests like X-ray and EKG, and the surgery itself next week, on Tues. The focus of interest should be getting through it and the post-op path report, which could answer important questions like whether this is a recurrence or new cancer, how aggressive the nature of the malignancy actually is, and whether or not the surgeon got enough out so the operation doesn't have to be immediately repeated, as eleven years ago.

Instead I find myself thinking about fitting into my bras, and what I'm going to have to do to look passably normal. This is actually more of an issue to me than how I'm going to look without a bra, since I can control who will see me naked (basically, as of this writing, no one), but I have to go out and face the public (including that pitiless population, my students) dressed, like it or not.

Nipples

So today I'm thinking about nipples in general and my left nipple in particular. It's an interesting experience to look at a part of your body that you've had all your life and know that it's shortly going away. I don't think that's ever happened to me before, unless you count cutting off hair and trimming nails.

When I've told people in person that this is about to happen (not many, actually), I think I see by their expressions that they're embarrassed or horrified, or maybe embarrassed because they're trying not to show that they're horrified. But is it really all that bad? This is what I'm contemplating today.

That nipple (and its twin, of course) has had a long and rich life of its own, in a way. I remember very well when it first puffed out at age eleven, and my puzzlement about this, since I hadn't exactly been briefed on expecting it or what it meant. I can recall fitting into a size A bra, which became a B rather quickly after. There was the odd recognition that boys were very interested in the existence of those nipples, and not quite understanding the enthusiasm behind that for a long time.

It took a while to see the beauty of a breast and nipple, and to think my own were quite pretty. The nipple part of the breast is almost always painted as rosy and smooth, or photographed in glowing light, when in fact it's not lovely in itself, especially the bump at the end that goes into the baby's (or lover's) mouth.

Then came the babies, three of them, if anything more fixated than the boys had been, each infant in turn totally obsessed with those nipples. They were sore with the babies' vacuum sucking, as unbelievably (to me) they delivered the milk with sloppy efficiency and were always there in the middle of the night when they were needed (unlike plastic bottles that had to be fetched from the kitchen). And for a long time, even when they weren't needed (as in the middle of the night past the newborn stage) they were still always wanted, possibly the most wanted part of my entire body, since they've done double service for sexual desire and nurturing.

Because of breast feeding or weight gain or both, the bra size became a C and stayed there, and the bra no longer had to be the kind that opened for the baby's mouth. And so it proceeded for many years, the admirers of the nipples being lovers only, no more infants.

And now -- no babies, no lovers, no admirers any longer for those nipples. That one will be just gone, and the poor breast will look odd, probably monstrous to anyone who should look at it. I don't intend for it to be seen, though, maybe not even by me. I'm recalling that when my father had a mastectomy (he had male breast cancer) and swam shirtless in a pool, someone complained to the management that his surgery scar was disturbing and they made him put on a shirt when he swam. I remember his face when he told me that. And I've seen pictures of mastectomies myself online and in magazines, and I thought they were repulsive and disturbing to look at too.

Yet I am not very upset at losing my nipple, in spite of facing problems in looking good in shirts and tank tops. What's the value of looking good? I've been giving that up for years now. I feel like I've made a swap, my nipple for my life, and I've got the far better part of the bargain. I'm going to say goodbye to that nipple fondly and with regret, but it's going to be a hearty farewell. You might say that after nursing babies and pleasing lovers, giving and getting pleasure, it's done its job long and well and the last thing it can do for me is go quietly to save my life.

The Surgeon Weighs In

To me, it seemed like an eon till the doctor called me - yet I'm sure to him it seemed perfectly normal to wait two days. It was a short conversation, basically confirming that since the imaging revealed no new cancer, it's probably confined to the ducts beneath the nipple, the minimum for Paget's. He thinks a mastectomy is not necessary; he's just going to excise the bad stuff, which unfortunately includes the nipple itself, and hope that the pathology report supports that decision. If not, back to square one, which means mastectomy, though probably not chemo.

Many questions remain: When will surgery be? How long and how bad will recovery be? What will the path report show? Will I need more surgery for dirty margins? What about post-op treatment, since I can't be radiated twice? And so on. Sigh.

Of these, the most important is the path report: it will show if this cancer is a recurrence of the last one, or possibly a new one, and it will show the "grade" of the cancer cells. From what I've read, you don't want a recurrence, as it shows the cells were there doing God-knows-what all these years.

I feel like I dodged a bullet. Yet I can't now feel safe again, not for a long, long time.

Another Day

I'm embarrassed to say that though I sat in front of a computer several hours in the library today, supposedly working on my book, I accomplished very little. Instead I spent most of my time there reading reviews of the new Mike Leigh movie I saw yesterday ("Another Year") and searching for articles on how predictive MRI results are for successful surgery on Paget's Disease, the form of cancer I have.

I love to read movie reviews after I've seen a movie, especially one I'm on the fence about, but an hour and a half of this is over the top even for me. I did find a couple of very interesting medical articles co-authored (to my surprise) by my own surgeon on exactly the question I was researching. How fortuitous was that? And the answer was gratifying: apparently studies show that MRI exams are quite reliable in spotting "occult" (meaning hidden, those that don't show up on mammograms) breast cancer. Tumors of various types and sizes usually accompany Paget's and their presence determines whether the patient must have a mastectomy or might -- notice might -- be able to get away with excision of the nipple area.

Now to be fair to myself, all this distraction and procrastination probably had to do with waiting all day for the surgeon to call me back, which he has not, as of this writing at past 5 pm. I haven't spoken to him since I had the mammogram and MRI, and I can't know or do another thing till he tells me what the tests mean and where we should go next. So while there isn't the dark cloud of dreadful anxiety that made waiting for imaging results so difficult, I do still feel a bit on edge about that phone call and not knowing when the surgery will take place. I worried all day about missing it, the way I missed the dermatologist when she called to tell me the biopsy showed cancer, while I was in the bathroom for five minutes and left the cell phone in the other room. I then had to wait for another horrible hour or so to get hold of her.

"He's been in surgery all day," said the secretary snippily when I called him again at 4:30 pm. Apparently I'm going to be waiting some more.

Yes, Good News!

I'm almost afraid to write it, but the nurse called yesterday while I was having lunch out with a friend and told me the MRI result was "benign." For a second I wasn't sure what she meant, I was so focused on how much cancer there was. I'm still wary of being too happy till I talk to the doctor, who didn't call me yesterday. What does a negative MRI mean, exactly, about my condition? Does the doctor actually know, or is it an educated guess?

Today the doc is in surgery all day but supposedly will call me in between surgeries (what a fun day that must be). I assume I'm still going to have surgery to have the nipple removed, but I just have to wait and see.

Better "benign" than malignant, of course. I stood in the entryway of the Turkish restaurant calling my children to tell them: "Yeah, baby, a normal MRI!" There's nothing like delivering good news to kids who are upset and worried about you.

And now more waiting. What a two weeks this has been.

More Anxiety

I was told to try calling for the MRI results late this afternoon (Tues), but when I did just now, the nurse {?} said the results "are still being reviewed" and I should call tomorrow afternoon instead. It's a funny thing that today I was not too exercised about waiting for these results, still triumphing over my fear of MRI's yesterday. In fact, I was in a good mood all day, an I-can-handle-it, warily optimistic mood, and was quite productive with work.

But as soon as I heard that the results were not ready, anxiety kicked in. Was it bad news and they wanted to check and make sure before talking to me? Was the doctor not available to give me the bad news? Or did it just mean that no one had looked at the report yet? No way to know.

Again I focused on a detail: I'm supposed to have lunch out and see a movie with a friend tomorrow, which means I'll have to call for the news on a cell phone, where I often can't hear well. Do I want to be with my friend if/when I get bad news? No, peculiar as it may sound, I'd rather be alone.

But I'm not going to stay by my home phone all afternoon in a state of high anxiety. Better to see the movie and hope for the best, I think.

Oh, I wish this part could be over so we can get to work on what needs to be done to save my life.

Take That, You Nasty MRI, You

I was dreading the horrible 45 minute MRI, but I got through it with flying colors just now. First, my daughter A., who always knows exactly what to say to me, gave me a stern talking to about sucking it up because I had to. I knew she was right: I could do this. Second, the Valium was excellent. I wish I'd had it last time when I ran out of there crying with fear and anxiety.

I took it early enough so I was woozy and pleasantly sleepy when I went in. When I was positioned lying flat down on the narrow table, the worst problem for me was not moving my head for nearly an hour --it was immoblized in a kind of hole in the table (surrounded by a tunnel) and I couldn't even lift my chin or scratch my nose, which itched a bit after a while. But they played classical music through the headphones and I imagined ballet dancers moving gracefully and beautifully to the music; that helped a lot. And they provided a ball to squeeze if I needed to stop the procedure. I like an exit plan.

When it was over, I was elated and treated myself to a cab and a guilty-pleasure dinner out (spaghetti and meatballs). Of course the results of the MRI are the next hurdle (tomorrow or the following day) but one step at a time. Right now I'm feeling great because I had the strength to do it.

Can't help wondering if heroin is anything like Valium? If so, I can see the appeal. Im not the druggie type, though, which is why I'd never taken Valium before. You can be sure it will be on hand for the next MRI.

Anxious Me

This weekend I've experienced a lot of anxiety. Last night, for example, I couldn't fall asleep, not typical of me. I can't wait for this week to be over: the MRI on Monday, the talk with the surgeon about the results on Tuesday, scheduling the surgery.

I also feel a lot of sadness. Even if this doesn't take my life, cancer is preoccupying the very time that I thought I'd have to work hard at my book project and yet also relax, free of the usual pressures of teaching. Instead it seems that January will be devoted to taking care of this invader.

On the good side, I saw a lot of my little grandsons, ages 3.5 and 6 months, who live nearby these last two days, and they could not be more distracting. No matter what, I can't help laughing when I'm with them. Visiting me, the 3 year old commented, "This is a nice place,Grammy". Actually it's a small cluttered studio, but he doesn't care about that.