2012년 12월 20일 목요일

Aging and Ailing


My mother has never been quite well since I was about 13.  That’s when she had cervical cancer at the age of 46.  Good news was that it was detected early and that she kicked it.  But it had its price.  Her treatment did not include chemotherapy but the radiation 30 years ago messed up her intestines and she never had one day free of some sort of gastrointestinal trouble since then.  The unfortunate hernia surgery about 19 years ago, which got so complicated as to require two more operations within months, did not help.  She had to be hospitalized numberless times in the past twenty years for many intestinal problems including strangulation.  Her surgery record also includes three hip replacements and two broken elbow surgeries—all of which she had after her mid-60s.  Then there was breast cancer 6 years ago.  It’s very rare to have two primary cancers, but she did, with other big and small illnesses and operations in between.  In my family we’re only glad that the tumor was small enough to let her dodge the ordeal of chemotherapy once again.  We just can’t imagine how, or whether, she could have withstood the chemo with her screwed up insides.

Two weeks ago, she suffered the worst case of intestinal strangulation she had so far.  Although she was dispatched to the OR for an emergency operation, a severe case of peritonitis caused by ruptured bowels threatened her life.  The doctors saved her; but since she went to the OR in an almost septic condition, she did not recover lucidity until days after she came out of the ICU.  I never knew that septic shock was such a serious thing.  She would open her eyes but I could see her mind was elsewhere, while her body was suffering with a dozen tubes attached.  What little she uttered was incoherent or incomprehensible.  It took over ten days for her to recover a modicum of lucidity that enabled a simplest conversation, a pretense of bodily coordination that enabled the slowest bathroom trips.  Today, however, she went in for another operation because her suture wasn’t healing properly for prolonged infection.  This second operation didn’t solve the problem for good, though.  The doctors say that they still need to watch how the infected area will heal.  At this point, we can only hope that she will manage to keep up strength, that her immune system will fight out the infection effectively with the aid of medication. 

When your parent is ill on an almost regular basis for an extended period of time—I don’t mean weeks or months, but years and decades—your prolonged worry and trepidation and, to be honest, the inevitably accompanying sense of exhaustion, irritation, and guilt, turn into a hard knot of these affects that eventually overrides your entire relationship with that parent.  Unfortunately such is how I am with my mother, I am sad to confess.  This, however, I never thought about deeply or consciously when I was healthy.  Helping Mother with anything, helping her go in and out of the hospital, listening to her endless complaints about symptoms and doctors and foods, were what my siblings and I thought we just had to do.  Ever since I graduated high school, Mother was someone I needed to watch out for, rather than someone who looked after me.  Since I was a teenager, I didn’t have much that I needed her help with anyway, and Mother always demanded our assistance.  My sister and I always did whatever chores she assigned us, and they weren’t few.  She never told us to do our homework; instead she told us to run the vacuum, do the dishes, mop the floor, or take out the laundry, etc.  We still go over to my parents’ house every weekend and do the housework—cooking, grocery shopping, and sometimes cleaning: we’ve been doing it since we each came back from our studies abroad over 12 years ago.  Mother preferred it to hiring help around the house.  So we the two Ph.D.’s would break our backs in the kitchen every Saturday and/or Sunday, while Mother nagged away as if we were clumsy teenagers.  It's not Alzheimer's for sure, but in her slightly clouded judgment she didn't seem to notice that her daughters were middle-aged women.  This nagging frequently becomes quite unbearable, for it is a mixture of angry outbursts and whiny complaints at everything we say and do, irrational and endlessly repetitive.  Even though we know that this is not so much about us as about her tough lot in general, it certainly is misdirected at us and it is we as easy targets who have to take the bullets.  These bullets hurt too, and very often we need to have our emotional shutters down to minimize our emotional injuries, which in turn will increase her anger and frustration at our lack of response.  Still, we deal with it—we’re young (relatively speaking, that is) and she is aged and weak.  But what about Mother’s emotional care?  What about so-called maternal love that everybody is so religiously talking about?  This must sound horrible.  I have never expressed how I feel about my mother this nakedly.  I’m sure she loves her children, but my siblings and I haven’t felt it in a very long time.  When my youngest brother got married two and a half years ago, she didn’t feel like going to his wedding.  This was inexplicable, for she wasn’t afflicted with any discernible disease or symptoms at the time.  In contrast, Father had had heart surgery only a few days before but hurried out of the hospital lest he miss the wedding of his youngest child.  Sickness can change people.  I remember her being fun, bright and warm once—but that was a long time ago indeed.  Formerly cold and stern Father mellowed down to become the emotional caregiver in our clan, whereas Mother’s long history of various health problems turned her into a near stranger, whose foremost concern is her own physical comfort.  This is understandable in a sense, but I’ve been feeling more conflicted about this in the last year or so.  I often wondered what exactly she thought about my illness.

After my diagnosis, I had fretted so much about how to break the terrible news to my aged parents.  When I finally told them, it was Father, not Mother, who even in devastation kept comforting me, calling me for information, and reassuring me.  She didn’t say much, if she was worried or curious.  While Father called me almost every day to check in on me, Mother must have been content with his report.  As I couldn’t eat much, Father constantly worried about how I was managing at home and wanted to take me out for a good meal whenever I felt like going out.  Friends came over to cook and eat with me whenever possible—especially Jooyoung and Nari came every week, I’m eternally grateful—and even some male friends came over with food.  But my own mother never asked me how and what I ate every single day alone in my own apartment.  Once she packed up some food for me to take home from their house, and it was just that once.  Sure, she was in and out of the hospital with her own problems but she wasn’t constantly bedridden.  Yet, she never came to see me at my home or at the hospital even when I had surgery.  Never once did she ask me whether I had a mastectomy or a lumpectomy.  Later she gave me about a thousand dollars and told me she was sorry she couldn’t do much else.  I didn’t need her money; and even this I know she did at Father’s urging.  I would have felt more loved, had I seen her wringing hands over my hair loss or worrying over my scarred body or something like that.  As I recovered from surgery and began the radiation therapy in April, I gradually gained strength and was able to go out with less difficulty.  Even before my radiation therapy was over, I was once again going over to my parents’ house every weekend to cook and shop grocery.  Father was uncomfortable about it but too glad to see me function almost normally again.  Mother didn’t seem to remember that my health had been seriously jeopardized recently—if she did, she never mentioned it.  She never showed how she felt about me laboring in her kitchen again.  Her fault-finding with my perpetually sub-professional cooking was quick to return, though.

All this, however, is by no means to speak ill of my mother or to cry over not getting enough love from her.  My 76-year-old mother does not pamper my 43-year-old self: what a big deal.  It is more about the sorrow and frustration of losing one’s loved parent over to age and illnesses.  No longer a child, you don’t expect mommy to hold your hand through a crisis.  But what about a mother who doesn’t expressly worry over a daughter’s cancer?  She raised five children and did much for her husband who had his slew of medical problems.  Perhaps she used up her ability to care for others.  When your mother acts like a third party about a potentially fatal disease of her child, you realize she is spent.  I feel awful for her.  What great pain it must have been that makes her forget the suffering of her own flesh and blood.  During the chemotherapy, the loneliness of pain was sometimes unspeakable.  I often felt that without Mother’s love a single person in sickness really had nothing and no one.  I do have very caring Father, but Mother’s emotional distance, or should I say absence, made me incredibly lonely.  How ironic—I dreaded breaking my parents' heart but on the other hand I was at a loss with Mother’s extreme undemonstrativeness.  Don’t other mothers usually make a huge deal and cry about such things?  Was my mother so blase because she too had it and therefore considered it old news?  Or was it because she firmly believed that I’d beat it just as she did?  I don’t know if I’ll ever figure her out.  I have no heart to accuse her of not caring enough or to confront her inability to understand me.  What terrifies me, though, is whether I will turn out to be like her in old age.  I look like her, and my body is much like hers.  Her history of two cancers kept me in fear of inheriting the tendency, and voila!: we have breast cancer in common.  There is nothing more terrifying than losing oneself in aging and ailing.  Will I too become so sick and so emotionally incapacitated in age?  I don’t know if I’ll live to become “old” even, but it’s a chilling thought.  How sad is it that a daughter should shudder at the idea of resembling her mother? 

Everybody says I still need to be careful and spare myself, and I know that.  But there can be no question when it concerns your own mother.  I go to the hospital almost every day, wait for hours on end in the ER or in front of the OR, look after father in her absence, ready to spend nights in her hospital room with a bedpan if need be.  She will not tell me to go home and take care of myself.  But it's not like I'm killing myself for her.  I do these things along with my sister, my brothers, and my father.  At the same time we all try and have fun, enjoy our lives in whichever way and whenever possible.  And as my friend Sheri says, we try not to feel guilty.  Yet I hope Mother will recover; she must recover, for her own sake, for father’s sake, and for the sake of me and my siblings too.  For, even though a mother’s endless, unconditional love is largely a myth, an emotionally absent and constantly ailing mother must be incomparably better than no mother at all. 

2012년 12월 10일 월요일

Woman in the Next Bed


I hear that a friend of Kim’s was recently diagnosed with breast cancer.  My heart sinks at the news, even though I don’t know who she is. I’m sure she already has her own network of friendly support and commiseration. Nonetheless, I offer to do whatever I can for herexchange emails if she wants, for instancejust in case. Instant solidarity based on shared affliction may sound like a cliche, but you realize that it’s become a cliche because the ages-old truth in it has been worked to no end.
 
Knowing your disease is important.  But it's not just a matter of knowledge.  Breast cancer is such a public disease that googling alone will provide you with an overwhelming amount of information.  I devoured whatever I could get my hands on in the first few weeks after my diagnosis. But only a very limited amount of medical discourse and statistical data helps you cope with the catastrophe that has become your everyday life. Statistics is especially tricky. You’d like to learn the 5-year survival rate, 10-year survival rate of your particular subtype of cancer. Inevitably, however, in the process you also get to learn the recurrence rate, the mortality rate of your particular age or ethnicity group. Your refusal to be reduced to a piece of data won’t effectively prevent your wondering where in that pie chart or graph or table you’d fit eventually. This can undo you at a stroke, because, being that one woman out of eight, deep down you think the odds are already against you. Especially if you’re that one woman with the triple negative breast cancer unlike the other nine women with other, less difficult subtypes of breast cancer, wouldn’t you think the odds are really against you? It’s hard to say what particular good it did me to learn about the TNBC’s higher recurrence rate in the 3rd to 5th year period.
 
What did me good, on the other hand, was the things I learned from other women with cancer. During my first chemo infusion, the woman in the next bed, who looked about my age, almost determined the ways in which I took my own chemotherapy. Seeing that I was as tightly wound as possible, she asked me whether it was my first. She was having her fifth. Only two years older than me, she had colon cancer. Not exactly the most inviting personality in general, I was in no mood for conversation.  But she kept talking. I never could understand why some sick people just assumed that other sick people would openly discuss their sickness with anyone. My slow, inexpressive responses didn’t deter her, however.  When the nurse from the oncology department left me with the booklet about the side effects, diet, exercise and so on, the woman in the next bed again turned to me.  “You won’t throw up. You’ll lose appetite, but with antemetics these days you don’t throw up.” I still didn’t feel like talking but I could gladly do without one of the most upsetting images about chemotherapy. “Eat whatever you want and keep your strength up. It’s a cycle of good days and bad days. You’ll be fine on good days, fine enough to go out with friends and stuff.” She was actually answering some of the questions I had asked the nurse. The nurse gave me a lot of helpful general information, but this co-patient’s first-hand report was in fact much better than the nurse’s noncommittal “every patient can react differently” spiel. And she told me many things besides, including what she liked to eat, how she was dealing with particular symptoms, etc. She wasn’t invading my privacy. She was instead forgoing her privacy to help me with what I was in for. In the end, she told me that it wasn’t easy but “bearable” (her exact word) and showed me that it was possible to carry on with life, with the chemo as part of it. And she wasn’t being a hero or a cheerleader, either. That was good to know, truly. If someone who was going through nine infusions could say that it was bearable and make it believable, it meant that I’d be OK with my six infusions. Weeks and months into the chemo, I realized that there were many things that professional medical discourse didn’t, couldn’t, prepare me for. But I often thought of this co-patient’s reassuring word and demeanor. Symptoms and side effects came and went, and I believed that all those things were bearableand they were.
 
Three weeks after my last infusion, I was sitting in front of the Breast Cancer Center at the KUMC (Korea University Medical Center) for the ultrasound and a CT scan. I noticed the woman next to me burning a hole in my face with her stare. By that time I was too used to my own sickly face to be very self-conscious, but her stare reminded me that I indeed looked awful. I was annoyed and turned around with a terrible, accusing look. When our eyes met, she said: “The eyebrows go, too? No one told me about the eyebrows.”  With such absent-minded despondence in her face. She had had her first infusion only a few days before. Memories of my first day were still fresh. I said that no one had told me about the eyebrows and eyelashes either, and that I hadn’t even realized that they were gone until there were only four or five strands left. I found myself saying things to her. “Losing hair is nothing to worry about. I feel better than I look.” Without meaning to, I suddenly turned into that woman in the next bed from a year before, and was basically telling her that it was going to be “bearable.”
 
I had another friend who helped me with the details of her experience from five years ago too. Since hers was the TNBC like mine, her successful cope record is particularly meaningful to me. Though she was temporarily living in Brazil until a few months ago, she was another woman in the next bed to me with her long-distance support. For another friendthis is an old friend’s wifeI’ve been the woman in the next bed most willingly since her diagnosis last June. Everybody knows at least one person who has or had breast cancer and it’s one of the first things they would tell you. Most of the times such remarks don’t amount to much, but connecting with that person might actually help. I guess that’s why there are support groups on and off line everywhere. My own personal chain of “women in the next bed” attaches me to these co-patients.  All the more so, as I never forget that still early in our occurrence history we’re copers rather than survivors just yet. I hope Kim’s friend is coping well. I hope my friend’s wife will sail through her last infusion in two weeks.  Every time I think of them I root for them and root for myself.  In commiseration I root for all the copers and all the women in the next bed.

2012년 11월 25일 일요일

That Rundown Hair Salon

There is a tiny hair salon in the alley between my apartment complex and the large thoroughfare.  It's a rundown, one-woman operation, which seems to have lost track of time since the early 1980s.  Apparently the salon has a rather limited clientele.  Even when there is someone inside, it's hard to tell if she is a customer, for that person would be sitting on the couch chatting with the owner/stylist lady, not on a high chair in front of the mirror.  Somehow the business doesn't go under, and I'm happy for the lady.  I went into that place twice--November last year, and two days ago. 



I had started chemotherapy in late October.  The nurse from the oncology department who came to explain possible side effects said that hair would begin to fall off in about two weeks after the first chemo infusion.  Mine was the cocktail of Docetaxel and Epirubicin, both of which would cause severe hair loss, so there was no avoiding it.  The nurse said that shaving it off would make it less difficult.  I nodded, but it's hard to imagine what it is going to be like before it happens.  Until about a week into it, it looked like it was going to be slow, gradual, and therefore manageable, even though there were more and more strands of hair on the pillow and on the floor.  The second week I had to stay in the hospital in quarantine, for my white blood cell level plummeted close to zero.  Little windows of lucid hours between feverish hazes and drug-induced sleep were spent in horrified revulsion against the "sterilized" hospital food.  No time to worry about hair.  After the second week, though, it was becoming impossible to shampoo in the shower.  Then, it didn't even need touching.  Strands of hair slowly rained down on the table, on the plate, as I was eating.  Wearing a cap to keep the hair in place only hurt my scalp.

The stylist I usually go to, however, wouldn't do it.  She just kept crying.  We had become friends over the five years, and it was sweet of her to be so emotional for me.  This was inconvenient, though.  Where should I go, then?  Should I do it myself?  But I'm not Samantha and my life isn't Sex and the City.  Talking to another hair stylist about this at a different shop wasn't an attractive option.  Being stared at by other customers in an unfamiliar place was even less so.  If my chemo-fatigued self hadn't been so tired and weak that day, it would have taken hell of a lot more inner turmoil to convince myself that anything would be OK with a complete stranger, that they really didn't care.  My immune system had just been terrorized and I couldn't wander around any longer.  When I went into that rundown place, the owner lady was by herself, watching TV. 

As I was leaving, last November, she told me to come say hi when my treatment was over.  I don't know why I said I would, but I did.  I never forgot that.  Since the end of the radiation therapy in late May, I kept thinking about it.  I walked past that place often enough, but didn't know whether I wanted to go see her or not.  I did and didn't.  If she hadn't forgotten, perhaps she'd think I was dead or something.  Yes, the tiny hair salon owner has nothing better to do than think about the sullen sickly woman whose hair was falling out, right?  The world doesn't revolve around me, I know.  But I kept thinking that she did me a big favor when I really needed one.  More importantly, it wasn't what she did.  It was how she did it.  She understood what I needed without my having to explain at length.  While doing my hair, she talked about things with me like she would with any other customer.  No fuss, and just the right amount of discretion.  She encouraged me to get through the treatment well only when I stood up to leave.  I had been so freaked out about everything that it was such a relief to have the head shaving finally done that day.  In addition, having a bald head didn't seem to matter much when an almost normal conversation with a stranger was still doable.  No tears that day, which in itself was quite an accomplishment too.

Two days ago, I finally went to see her with a small gift.  She remembered me when I reminded her of my visit last year.  Then she said: Was it breast cancer.  Was the radiation over.  Was I well now.  Marvelling at how full my hair was again, she told me not to dye it, for it's no good.  Two minutes into the conversation, I was bawling like a child, tears streaming down a year overdue.  Such an emotional outburst I hadn't had in over a decade, let alone in front of a stranger--well, two strangers.  I hadn't seen when I walked in but there was another woman sitting on the couch.  I didn't care.  That owner lady handed a Kleenex to me and wiped her eyes too.  In that rundown hair place, with the matronly owner lady, I don't know what came over me. 

2012년 11월 14일 수요일

"It isn't terminal, is it?"

On my way to the eye glasses shop--the place is right next to the campus--I found myself watching for familiar faces I might run into at the busy intersection.  Since my diagnosis over a year ago, the few times I came to campus to pick up mail or books from my office, I came late in the evening lest I should run into colleagues.  Mostly I did not want to be seen with the hairless, steroid-induced moonface, or to have to explain anything to the ones not yet in the know.  When the moonface is long gone and the hair is long back, however, the dread of running into random acquaintances lingers.  Most people are generous and kind; and you think you are somewhat used to that "oh I'm so sorry" conversation.  But actually you never know where that interaction might spiral down to, and you're a bit afraid of what you might learn from all that--about yourself, and about the other person.  Serious illnesses like cancer will put you in situations where you get to see things that you wouldn't normally see in other people.  It's either that, or with a new, unprecedented degree of self-centeredness you develop this uncanny ability to be offended and find fault with others.

An older colleague wrote me a long email on hearing about my diagnosis.  As a person who had had breast cancer some years before, she was most sympathetic and I was grateful. But her repeated insistence upon visiting me at home was quite out of line.  We weren't that close, and having guests like her over was out of the question in my condition then.  Chemotherapy puts your general social life on hold.  You try to carry on with a normal routine but there are many days when you just can't see people, period.  Of all people she should have known that.  I begrudged the time and energy I had to spend in politely diverting her offers to visit me.  Then she wanted to give me the hats from her own chemo.  In general, I'm in favor of recycling.  But her hats?  Truth be told, I didn't want to inherit the relics of her cancer.  I could make my case with the obsessive compulsive disorder plea, but I guess I never did like her.  When I told her that I already had more than enough hats and that she shouldn't go out of her way, she said she'd send them via someone else.  She just wouldn't let it go.  A few weeks later, another email.  The hats couldn't be dry-cleaned for there was no parking space in front of the dry cleaner's she had to go to.  She was going to send them as they were, and told me to wash them or have them dry-cleaned before use.  Too tired to be polite, I finally said outright that I didn't want them.  She gave up that idea then, but ended up sending me a book about anti-cancer food.  The only problem is that the book is in Japanese and I don't know Japanese.  The book came with her message that my sister could translate it for me.  She could, indeed.  But in all honesty I cannot imagine any cancer patient willing to slave one's sibling to translate a common sensical book about healthful foodstuff.  That book is now rotting away in the cupboard.  All the same, long minutes on one of those sick, white blood cell alert days had to be spent in writing her a thank you note for that precious, thoughtful gift.

One day in December, I received an email from a professor I know from a feminist scholars association--in the same discipline but another university.  In the email she said she had heard I was sick.  Surprisingly, though, it wasn't one of those "get well soon" notes.  Without even asking me how I was holding up, she asked for a copy of my essay on Walter Benjamin, PDF file preferred.  It was necessary for her research.  It would have been understandable if she had had no idea what I was going through.  But she did state that she had heard.  Yet she was asking me to make photocopies and put them in the post or sit up in front of the computer and sort through my files for her convenience.  Why did she not go to the library or use web databases?  Was she being considerate and treating me as if I wasn't sick?  I never got to ask, for I didn't bother to write back. 

A few weeks ago, on my way to the garbage recycle spot in my apartment complex, I ran into a professor in another department.  She'd moved to the same complex and was disposing of her recycle materials.  We had had coffee or lunch a couple of times a couple years back.  Then she wanted to hang out more but I extricated myself from her invitations with some sense of guilt.  Her complaint about not having friends at work made me wary, although I didn't care enough to figure out why.  I preferred to think that she was just boring or something.  And I hadn't seen her for a couple of years until that day.  In front of the recycle spot, the first thing she asked me when I mentioned my illness was, "It isn't terminal, is it?"  I was baffled that someone of her age and education was capable of uttering something so inadequate.  She was smiling, too.  The extent to which that question baffled me is matched only by the extent to which her parting words disturbed me: "Be careful.  They say it recurs, you know."  When careless curiosity about what stage my case was can be easily upsetting, it's hard to say what to make of such remarks.  I never could tell whether she was malicious or colossally clueless.  On the other hand, I could see why she would complain about having no friends.  My lingering sense of guilt about blowing her off couldn't have dissippated any faster.  Now I am extra careful on the garbage recycle day so I wouldn't run into her and her inadequacy. 

And when I went to the faculty meeting for the first time in over a year two weeks ago, they were glad to see me well again.  But one colleague seemed noticeably displeased with my appearance.  The visible discomfort in his face invited a lot of questions on my side.  Maybe I was just another possible obstacle to having his way, or maybe he was unhappy to suddenly find his all-important self in company that required some form of acknowledgment.  I don't know.  I can come up with a thousand theories, but in the end it boils down to him not knowing how to properly address others as the occasion calls for.  There are people who honestly don't know what to say to me--but these cases are all different.  Some can't find the right words for what they feel; some are too afraid to hurt my feelings with quick words.  But there are awkward silences and wrong words caused by serious social ineptness or a simple lack of sympathy.  Being on the receiving end of these latter cases is never pleasant even when you're not afflicted with a life-threatening illness.  One might think, having cancer does not entitle one to special treatment from all quarters.  But I object.  Who would want to live in a world where everyone thinks even a cancer patient shouldn't get a little special consideration?  I'm not talking about wanting to get away with murder, am I?  His reluctant inquiry after my health was the worst of the kind, delivered five minutes after I sat down next to him, the only empty spot.  While I was answering him, he even stopped listening to me mid-sentence, and began talking to someone else.  He didn't know how to, or didn't care to, put up a passible performance of politeness.  I realized that, in our supposedly collegial interaction of the past seven years, if there was anything he valued in me, it was my service to him.  I can't say I didn't know it, but it was as if that ugly truth I never wanted to acknowledge even to myself suddenly came to light then and there.

Work is a strange place where it's best to keep most people at a reasonable distance and most personal feelings and thoughts under the surface.  Sure, a few friends who will watch your back are essential; but I'd rather not think too much or too deeply about the rest of them, unless it's absolutely necessary, and not show too much of myself.  I would have liked to stick to that particular way of maintaining a friendly yet functional relationship with colleagues.  But since last fall, some things couldn't be helped, and it's too bad.  Certain details about my body became casual knowledge to many people at work and beyond.  I don't like it.  And I can't say I like certain things I've come to see about some of those people.  Not to mention the (lack of) depth of my own character.  It was more (and worse) than I needed or cared to know.  This is part of the unexpected and unwelcome fruit of going through a crisis.  Sure, it's not like everyone has to tiptoe around me 24/7, and I often resented being treated too much like an invalid.  I admit that my frequent inability to handle the strange emotional kinks made me super bitchy.  You try to objectify things, reminding yourself that this was a situation as difficult for others to handle as it was for yourself.  Still, inexplicable incidents make you wonder what it is with academics, including yourself. 

2012년 11월 12일 월요일

Relieved

Dr. Lee calls me in the morning with the biopsy result from a week ago.  The second my phone rings, I instinctively know it's her.  My heart sinks. She's supposed to call me at 5 pm--why is she calling so early unless it's urgent?  I begin to analyze her tone, but her hello is so finely balanced that I cannot immediately tell what that voice is about to deliver.  I think I can read from her voice what sort of verdict I am in for.  This of course is total bullshit.  Seasoned doctors like her wouldn't necessarily show it in the ways that patients imagine they can read.  But doctors are people too, and they will find it easier to give good news, surely.  And am I not an expert analyst of any text and context?  I can go on rationalizing and de-rationalizing, as if this endless rumination mattered more than the actual results and what they entail.  It's pitiful but I can't help it.  I get so wired up about these medical conversations; I'll pick apart littlest clues over and over--for any detail that might mean something, any hint that might shorten the suspense.  But it's Dr. Lee that makes everything good by getting to the point without ceremony.  The new lumps proved to be nothing to worry about: they're just hardened fatty tissues, as she had assumed, and they're going to melt away in time.  She called as soon as she got the result because she knew I was anxiously waiting.  So much for my interpretive skills.  Everything depends on the doctor, and thank goodness I have this awsome woman who is kind and considerate in addition to being extremely professional.

It's been almost three weeks since I found these new lumps.  It's a long enough time to spend in fear and uncertainty.  Fear, however, is so exhausting that it is unsustainable, I learned.  Somewhere in the middle of those three weeks, I stopped being actively scared, even though I was still worried and afraid.  Instead, inertia set in.  And it wasn't easy to fight it out.  Even though my anxiety had lessened since seeing Dr. Lee last week, waiting for the biopsy result was still a drag.  You can never be sure, for, as Dr. Lee says, "there are quiet a lot of exceptions."  That off chance weighed me down; despite what I was consciously thinking, my body and my unconscious still lagged behind, and it was getting increasingly difficult to get out of bed.  I'm relieved to be out of the tunnel now.  It's disheartening to imagine how many more of these suspenses I'll have to live through in the future.  But for now, I am happy to be healthy and happy to be enjoying this sense of relief.

As I was waiting for the biopsy result, I kept making a list of things that I would do once I'm off the hook.  There was no reason why I shouldn't have done those things before the result was in, and I know it isn't always healthy to be thinking in those terms.  But when you just can't help asking "what if" and putting your life on hold in face of the very concrete fear of recurrence, perhaps it is better to turn it around and use that logic to reward yourself afterwards.  Now that I'm all good, I will do those things.  Buy a pair of kickass suede boots.  Get new eye glasses.  Update Terry.  Get back in touch with Nawon, who left a message at the office.  Write a thank you note to that nice orthopedic surgeon who helped me with the hip joint stretching for weeks.  Drive to Damyang and see the famous bamboo colonies and metasequois forest.  Go to Tokyo.  Plan that trip to the US.  And go see that hair lady.  I think I will now.

2012년 11월 11일 일요일

Other People's Children

A beautiful hand-written card arrived in the post from a former student, wishing me a speedy and complete recovery.  I picked it up when I went to my office a few days ago.  She is a sweet girl, now a school teacher in NYC.  I had always liked her as a student, and she kept in touch.  I saw her in the summer of 2010 in NYC.  She was delighted to go to an upscale restaurant which she then couldn't afford as a poor graduate student.  It was fun hanging out with her outside the school setting, talking about boys and so on.  News travels fast, and I'm sure most of the people who know me, including students, here or abroad, heard of my breast cancer somehow.  But she seems to have heard it quite recently.  The "thinking of you" card was still in my purse and I read it again.  From the tone of the note it's clear that she is seriously scared for me.  She probably wrote it and mailed it the first chance she got, fretting to get her best wishes through to me in a hurry.  I relish her heartfelt concern.  It is a lovely moment.

When I started chemotherapy and suddenly had to stop teaching right after the mid-term week in October 2011, a number of students wrote me, some of them repeatedly, asking how I was and wishing me well.  They didn't know what exactly was wrong with me but probably suspected something serious was going on.  Professors don't usually disappear in the middle of a semester.  Regardless, these students were the first ones to send me a steady stream of concerned emails and supportive messages, for they were the first ones to notice that a serious illness pulled me out of my ordinary life, even before most of my friends did.  Not all of those emails came from the ones I personally knew or recognized.  Some of them I couldn't place.  Still they wrote me.  These students I teach are smart kids--they are accordingly very sensitive and conscious about their relationship with faculty, and wouldn't usually write to a professor who they weren't sure would remember them (except to demand a letter of recommendation and complain about, or plea for, grades!).  Only a few weeks into the shocking sensations of chemotherapy, I was disoriented and distressed, to say the least, and unable to write them back.  I simply didn't know what to say to them.  I did read those emails avidly, however--sometimes crying, sometimes smiling, and very often both.  The number of their emails declined over the months, but they kept coming.  I never took them for granted.  Each of these student emails was a fresh surprise, which opened a pocket of delight in the dark days of last fall and winter.  I was genuinely sorry that their semester was messed up: apparently they weren't getting what they had signed up for, even though I'm sure the new, substitute instructors gave them what I couldn't give.  At the end of December, the substitute professors sent final grades over to me; I could see that many of my students's grades suffered because of the sudden change of hands.  Astonishingly, though, not one of the hundred and twenty plus students in my two undergraduate sections sent me a complaining or questioning email about the final grade.  Not one.  Instead, many of them sent me warm wishes for my restored health in the new year, and quite a few graduating ones wrote me about their new jobs and thanked me for what they read with me in class.  As I got somewhat used to the chemo cycle and the entailing symptoms, I began to write them back, if only a few brief lines.

In reply, I write the girl in NYC that I'm all right now.  Reading her card again, I remember all the other unexpected kindnesses from my students over the past year, graduate and undergraduate.  When I went to my office for the first time in months in the spring, I was surprised to find cards and even gifts waiting for me there--a pot of orchid, chocolate, coffee, books, CDs, and so on.  I cannot recount them all.  Not knowing my home address, students had sent me these things to my office, hoping that I would get them sooner or later.  Last month, two students sent me emails, both remembering that it had been already a year since I stopped teaching.  They say they are waiting to see me again on campus in March, when I will come back to campus.  One of them I know, but the other I don't.  The latter's email is particularly precious for that reason.  Not having a child of my own, I alwalys thought that it was my job to take care of other people's children in ways that their parents couldn't and in the best way I could.  I still do.  These student's letters made me feel that I didn't do that terrible a job of it so far.  It is an exalting and humbling feeling, which even a kickass combination of chemo-induced nausea and insomnia at its height could not kill off.

2012년 11월 6일 화요일

What if

Yesterday I went to see Dr. Lee at the National Cancer Center.  She is the surgeon who operated on me on February 28, 2012.  I saw her only two months ago for the first followup meeting since my surgery, and everything was fine then.  About 2 weeks ago, however, I found two new lumps right next to the surgery scar.  This is the last thing you want, especially if you recently came out of the long hard process of getting rid your body of cancer.  Seriously. The first thing I did was call the NCC to make an appointment, but the earliest I could get was November 5, which meant thirteen days of suspense--thirteen long days that I would spend in the circular torture of uncertainty, fear, hope, and despair.  I had had a few scares about other symptoms since the end of the radiation treatment, which sort of familiarized me with the routine of this torturous waiting.  All those scares ended up being nothing serious.  Yet this was different, surely--two hard round lumps were found again in the remaining breast where malignant tumors had been removed.  Imagine what I could not but imagine.  I saw Dr. Lee the next day at the NCC breast cancer awareness event, and when I told her about the newly found masses, she felt them over the shirt and said that they were probably fat tissues hardening near the surgical scar.  But she still wanted to look at them closely to be safe.  The chance of recurrence at this point was low, but she also said that there were "quite a few exceptions," which was why she didn't want to brush them away.  She told me to come see her on November 5.  She could put me in an earlier spot that day, but could not get me anything before that date.  A few reassuring words from her were better than nothing, but she still wanted an ultrasound and possibly a biopsy as well.  A biopsy again?  From that day my sleep was disrupted: I woke up at all hours and kept having...not exactly horrifying nightmares but ambiguous dreams that left unpleasant aftertaste.

One of the worst parts of having cancer is this fear of recurrence and metastatsis.  The mere idea of going through another round of chemotherapy sickens you, not to mention the overwhelming reality of mortality closing in on you.  You literally startle with every pain, every new symptom and every unfamiliar feeling in the body.  And no one will tell you that you're just being neurotic.  Instead, doctors will say that you can never be too vigilant about anything unusual now and, if anything, they will want to have a closer look.  I sincerely miss the days when I was just another crazy hypochondriac.  The physical comings and goings that these appointments and tests entail are the least difficult part.  Even a regularly scheduled followup test seems like an exceedingly tough hurdle.  You feel small as you realize that you've become ridiculously dependent on the semantics of doctors' facial expressions, tonal changes, and gestures.  Then, whenever you're about to do something, the inevitable question arises: "What if I did this and then got the bad news?"  This question is a definite party-pooper, for nothing much retains its initial significance when measured against it.  It can and will stop you from doing whatever you were going to do.  You find yourself putting everything on hold, suddenly abject in front of the frosty reality of all-encompassing meaninglessness.  Thus your life grinds to a halt, until the results put you in the clear for now.  Even then it feels more like a reprieve than anything else.  So easy to just let yourself go in the way of fear and negativity.

The first few days after discovering the new lumps were slow and difficult.  Just like the days before I learned the result of my first breast biopsy.  I could not think of other things, and I kept feeling those lumps as if to make sure they were still there, just like I did last fall.  But every time I put my fingers there, I also hoped to find them miraculously gone, just like I did last fall.  As stupid and desperate that hope was, the disappointment and despair were fresh each time I learned that they were still there.  Pressed too much and too often, the lumpy area began to hurt and consequently the entire breast and arm ached, as if the mind-blowing agony wasn't enough already.  By this time I forgot how glad I was that she had left my breast almost intact and unscarred.  Why did Dr. Lee not remove the entire breast?  I was tired from all this fear and pain and did not feel like doing anything.  What was the use, when I didn't even know how long I'd live?  Inaction seemed the only logical choice.  Yet I couldn't just sit around fueling dark thoughts.  It wasn't easy to peel myself off the bed in the morning to go swimming, walking, grocery shopping, and so on, but I did.  I went out to talk about their theses with my graduate students, and I went out to dinner with friends.  All these things that I did, however, kept reminding me that I was living in this body which was mortal, already damaged, possibly beyond repair, and definitely beyond my control.  After a few days, though, I stopped fingering the lumps.  Numerous times I had ascertained that they were there, and there was nothing to be done about them until I saw Dr. Lee.  As the days of uncertainty were prolonged, resignation took over, and I thought about the lumps a little less.  Perhaps my mind needed to restore quietude or something similar in some way.  It wasn't optimism.  It was as if my mind was trying to dissociate itself from fear by remembering that fear too was useless after all.  The resilience of human mind probably enables us to cope with the worst in this way.  I couldn't altogether stop asking myself "what if I did this and then got the bad news?" but I didn't let it stop me from doing things.  I even started this blog as if to defy that question.  So, the second week in waiting crawled by and I went to see Dr. Lee yesterday.

After the ultrasound Dr. Lee gave me the same explanation she had already given to me at the NCC event.  She did order a biopsy and arranged it so that I didn't have to make another appointment for it.  Although I had to wait three hours in the hospital because she squeezed me into that day's packed biopsy schedule, I was glad to have it done before the day was over.  The young radiologist who did the ultrasound and took the tissues was matter-of-fact about the frequent hardening of fat tissues adjacent to the surgical scar.  All things considered, it is likely that that's what the new lumps are.  She didn't even seem to think that a biopsy was absolutely necessary.  That's not a bad sign.  Now I wait another few days before Dr. Lee calls me about the biopsy result.  I am not as worried as two weeks ago, but my sleep is still disrupted.  I don't like the fact that the fear of recurrence has this negative effect on my store of joie-de-vivre, which wasn't overbrimming in the first place.  I can no more pretend that it isn't true than I like it, though.  Maybe we in middle age should all be content with semi-joie whenever possible, as Kim says.  Still I don't understand those people who persist with perennial optimism under similar circumstances.  Are they stronger than me?  Is it sheer will, or is it self-deception?  The insidious question "what if" always hovers over my head.  What if, indeed?  I don't know that one could live as if that question didn't matter, or that one should.  On good days I forget to remember it.  Usually it takes an awful lot to plug on, countering that question with "even so!"  Yet I am told to maintain a positive outlook on life, for it helps reduce the chances of recurrence.  I can only smile at the lethal irony. 

2012년 10월 30일 화요일

NO SHIT

Jinyong calls me in the afternoon.  Like a good friend he asks how I am; then like a good doctor he adds that I should keep being cautious about everything.  As if I needed to be reminded.  True, I didn't always live like this.  And I'll jump at any reason to skip my Pilates session.  That he knows it slightly irks me.  But I am grateful to him for he's one of the friends who helped me get to this "healthful" state.  Now my diet is mostly of rice, fresh vegetables, fruits, tofu and seafood--everything organic as far as possible.  I do without meat and milk fat, and assiduously avoid sugar.  And absolutely no smoking, not even a social cig or two that I used to love.  I sometimes miss those occasional puffs but I know I can't afford to romanticize that now.  I don't like meat, so going meatless isn't a problem.  But desserts and cheese... Every once in a while, I'll have a bite, literally only a bite, and grudgingly curb myself.  Eating this way, however, is much easier than sticking to my exercise routine--Pilates twice a week, swimming once a week, and an hour-long walk (often longer) twice a week.  This may not seem very rigorous, but for someone like me who used to work out for zero hour a week for most of my life, believe me, it most definitely is.  Especially because my joints still ache from the chemotheray, working out always takes a lot out of me.  But since I started actively working out on a schedule in July, my body aches less.  The thought of not being able to stop this routine (or at least something simliar), however, is disheartening.  I am one of the laziest persons on earth.  Exercise is modern day torture.  Just look at all those unhappy faces on treadmills!  But my doctors are always breathing down my neck about regular exercise as if without it I would keel over any minute.  No shit?

On October 13, 2012, I was diagnosed with stage 2 TNBC (triple negative breast cancer).  That's a little over a year ago now.  I'd had a lump checked out and was facing the doctor in his office at the breast/thyroid clinic.  The usually smiley doctor looked adequately glum as he said, "the biopsy shows cancer cells."  So that was that.  Since happening upon that damned lump in my right breast 10 days ealier, my anxiety level went through the roof.  I am an extremely imaginative hypochondriac, who kind of likes going to the doctor and being told off for being neurotic.  Something was wrong, though.  A palpable lump cannot bode well.  Still I went to the doctor, hoping he'd set things straight.  But the usually chatty doctor was not so chatty when he told me that it wasn't just one lump.  He saw three in the ultrasound.  They weren't big but they were three, and he didn't like their shapes.  He ordered an immediate biopsy, when all I wanted to hear from him was, "Aw, get out of here, this is nothing."  Looking at him showing me the ultrasound pictures I could see thngs could not be good.  The mere sight of the spiky little monsters in black and white was ominous.  The poking needles didn't hurt as much as the marked reticence of the doctor.  The following week was a haze.  I tried to maintain a semblance of normalcy.  It was still unreal, and, flimsy as it was, I held on to the possibility of benign tumors.  On learning the biopsy result the following week, I realized that there was just no preparing for this, no matter how educated or philosophical you might think you were.  Even a meltdown is out of the question for its sheer senselessness.  The doctor suggested a mammotome procedure that afternoon so as to help expedite everything for me, with the cell block and stuff for further testing.  He also said I should call someone.  Too much to absorb and no one to call.  At that moment, an appalling new sense of the word "lonely" descended upon an unattached 42-year-old woman in a single-person household.  I could only repeat to myself: "No shit!"

Under these circumstances there is nothing one can do but accept the fact and act upon it somehow.  I had cancerous tumors growing in my body.  My body, which had been clean in the annual checkup only 10 months earlier, was being attacked by these rapidly multiplying malignant organisms.  Don't they usually take years and years to grow?  The speed and aggression with which these tumors seemed to be growing scared me most.  Something needed to be done about this.  Fast.  Promptness seemed imperative even in my addled mind.  Sitting in my car in the parking lot, I called my sister.  She was going to come for the procedure.  I needed someone else too, though, for I wasn't supposed to drive after the local anaesthesia and my sister couldn't drive.  Thankfully, friends came to rescue.  When I called SK, he said he'd run out as soon as possble to drive me home.  Then I called Jinyong, a close friend who is a physician, for what to consider and where to call.  As he got me some names and numbers at the speed of light, it was finally becoming real.  Looking back, that hour was a threshold to an entirely different phase of life.  The healthy, carefree, cancer-free era of my life was over.  From that hour on, a constant confrontation with the face of mortality was going to be an indispensable part of my life.  As a cancer-ridden single woman living alone, I was to be forever beholden to a few friends.  Several phone calls later, Jinyong and I decided that I'd go see two surgeons in the following week about treatment and surgery options.  Now it was a fixed fact.  Now that the first steps were taken, tight-lipped concentration on pragmatics gave way to fear and despair.  My voice began to crack a little.  If I were to have an emotional breakdown once in my life, this seemed to be the time.  But I didn't get to be a drama queen even at that moment, for Jinyong did not forget to forestall me by yelling, "Breast cancer these days is not even a cancer!"  I heard him half in relief and half in disbelief, but of all the things I had to hear that day it was the only thing that I liked.  No shit.

2012년 10월 29일 월요일

New

The purpose or direction of this blog I cannot say.  I guess it's like any other blog.  Since late last year writing became even more important than it used to be.  I communicated with close friends and other people in writing in the long months of my treatment.  Volumes of letters came and went, mostly emails but sometimes letters and cards in the post as well.  It helped me objectify and nurse my fears, and get on with the reality.  My kind friends' letters and emails gave me the love and support that I never knew I needed so much.  
















It was always private, though: my body, writing, my friends, everything.  While I was in the thick of it, I couldn't even imagine writing about it so openly.  That I've been playing with the idea of blogging for a while now probably means that things got a little better, or at least a little different.  But that doesn't mean I am not hesitant.  My experience of the past year is not exactly a pleasant business, and I don't always feel like dwelling upon it or talking about it--any part of it.  Not many people enjoy watching a documentary about diseases and other forms of suffering, and neither do I.  Part of me desperately desires to move on, leaving it all in the past.  Yet it is impossible to do so, obviously.  Then why a public display of personal exerience and feelings, when I much prefer bottling things up usually?  I still hesitate.  I do and do not want this.  But I could see why Dr. Susan Gubar wanted to write a book about her ovarian cancer, when I read that article about her in The Chronicle (http://chronicle.com/article/article-content/131611/).  

So here I am, thanks to friends who did encourage me to write (many thanks to Sheri, Kim and Anne!).  I don't pretend to a blueprint or a grand agenda here, though, much less any authorial stature or ambition.  And I unabashedly and desperately hope this isn't going to be my closing chapters like hers.  This certainly is neither to inspire nor edify, neither myself nor anyone else.  This won't be only about my breast cancer.  I still don't think that what I write would be worth anyone's while to read.  Maybe no one else will read this, and that would be perfectly fine too.  Call it therapeutic scribbling. Yet, it is also true that I am not writing this only for myself, although I can't quite say who or what I am doing this for.  Maybe I want to rechercher my own termps perdu in my own rambles.  Is there ever a reason.  Not having to justify anything is sometimes all the reason one needs.