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 her—exchange emails if she wants, for instance—just 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 bearable—and 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 friend—this is an old friend’s wife—I’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.

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. 

"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. 

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.