Negotiating (Non-) Mothering

My friend Cheryl who has been trying very hard to adopt a baby is going through a really tough spell.  Trying to form and maintain a relationship with one potential birthmom after another must be like a series of impossible exams--how do we prove our ability to love and provide for an as-yet-unfixed object, especially when the judge is the person who will never think anyone good enough for the job that she herself is (for whatever reason) to give up?  Even when one understands why it should never be easy for anyone to adopt a child, it just seems plain stupid to me that any birthmom does not see that my friend would be the most loving and wonderful mother to the child.  

While writing Cheryl how sorry I was to hear about yet another heartbreak with a birthmom, I thought about how difficult it is for so many women to negotiate that strange built-in potential to mother a child (biologically and/or otherwise)--no matter how different situations may be, how different individual aspirations and frustrations may be.  In my case it was the pain of realizing that I would not be able to realize the said mothering potential, my own heartbreak over a child that I never had and will never have. 

In the summer of 2010, another long-term relationship possibility that I had been invested in for quite a while was fast proving itself dead.  On its heel I had a mindless fling with a much younger man, which ended up in sheer humiliation.  The two incidents were like my last straw.  I did not consciously think of them that way then, but they must have been, for I remember, despite the apparently impracticable circumstances, wanting and hoping to make it work with each man with a kind of desperation and urgency that surprised even myself.  When the two men successively turned out to be no good for even a lasting friendship let alone a committed relationship, a blinking red light came on in my head, as if to direct me toward something that I had not thought of very clearly up to that point.  I was repulsed by discourses that had anything to do with the proverbial "biological clock" but there it was.  I was 41, had moved into a new place by myself, but instead of joy and pride at my first home that I bought with my own savings, medium-degree depression set in.  That was the only time in my life when I really did suffer from something that could be called clinical depression.  Every day after work I would trudge home and wallow in misery.  In the evening I would sit alone facing what I then called my daily 7-o'clock crisis. Whenever I turned my computer on, I logged in on Facebook and did nothing but look at the photos of my friend Andrea's then newborn baby Oliver.  Andrea has no idea to this day, but Oliver's unrealistically beautiful baby face and Andrea's characteristically understated expressions of happiness would make me cry for hours on end.  I was long used to the reality of being one of the very few left who had not parented a child or two, but Andrea's pregnancy and birthing had a very particular impact.  She had given birth with a donor dad, and Andrea having a child kind of meant that everybody but me in the entire world had a child.  It wasn't merely because she is gay--it was because she really was the last person you would ever imagine to use her own body to mother a child.  I was genuinely happy for her and her partner, but I was genuinely sad for myself and my ever shrinking possibility of having a child of my own.  The more I admired Andrea for braving it and beating all the odds against her, the more I despaired at my own misfortune and lack of courage and determination.

I had never consciously decided upon not having a child, I always had been patient, nursing the vague idea that it would happen to me when my turn came.  In all of my relationships, though, the only time a child seemed a real possibility was when M would sweet-talk to me about what to name the child we would have.  I was getting into my late thirties then.  Partly because I was feeling the escalating pressure of time on my body and partly because I was foolish, I let him fool me with that shit when in reality he was manipulating me not to leave him in his pathetic state of obsessive disorder with all his imaginary symptoms.  After 2 years of empty promises and pathological whining he ended up leaving me for another woman (or for a man--who knows?), and in the following years my luck with men did not improve.  A traditional marriage and family life was never something I wanted.  But not wanting it had its toll.  Without it, I realized, it was difficult to have, or even to want, a child--especially in the culture where I belonged.  With no feasible alternative in sight I intuitively felt that I was being deprived of something very significant.  Thinking that it perhaps was my own fault, not having had more aggressively sought to mother a child up to that point, I began to contemplate adoption and even donors.  This contemplation, however, would always morph into a struggle with the sense of guilt at not honestly feeling quite equal to the formidable prospect of becoming a single mother in a morally hostile society.  Then the guilt would become even more compounded, for I could not help but think that perhaps my desire to become a mother was (is) just not strong enough.

My problem kind of solved itself in the most unexpected and unwelcome manner, when I was diagnosed with breast cancer shortly after I turned 42.  Everything changed in a slow yet radical whirlwind.  2 and a half years later, I now feel too old and unfit for adoption, with messed-up ovaries.  The fear of recurrence is ever so handy in justifying my cowardice in face of adopted single motherhood.  It's all but impossible to picture my life at this point with a man who will adopt with me.  Things have been settled for me, without my consent.  In a sense it's kind of convenient that I can now stop wringing my hands over what to do, how to do.  That, however, neither erases my wanting altogether nor mitigates my irrational sense of guilt at not having capitalized my built-in capacity for mothering.  My sense of guilt has nothing to do with the perpetuation of the species or some other moral value.  It has everything to do with my own self--not having explored the life as mother, I will never be able to stop asking and wondering what kind of mother I could have become, what kind of child I could have had, what kind of relationship we would have had, what different meaning I would have been able to attribute to my own life. 

Idly I entertain this notion that perhaps I could get involved with a divorced guy with a child or two who will let me play out the nice stepmom scenario.  But in reality most divorced guys my age do not have small children.  Their kids are far more likely to be sullen teenagers who will resent dad's new middle-aged girlfriend to death.  My imagination stops at the scene where I'm murdered by miscreant grownup stepchildren, who spit on my gouged out eye sockets.  Maybe it is good for my non-existent baby, adopted or not, to not grow up exposed to my grotesque imagination and macabre sense of humor, which are not getting any lighter with my persistent cancer worries. 

Though I deeply feel for Cheryl in this difficult time, I almost envy her too.  All the more reason for me to share her sadness and to root for her in her unwavering effort to adopt.  And I sincerely hope she will meet her baby--sooner than later. 

Call It Intuition or Denial

The semi-annual followup scans that I have to go through since my surgery is a veritable ordeal in my otherwise painless life.  I am duly aware of the fact that my usually eventless and relatively comfortable life leaves me not much to complain about.  I humbly accept the fact, and I am mostly content too.  I also know that the successful treatment and surgery outcome is something to be grateful for.  I am profoundly grateful, indeed. Yet there is no denying that the regularly scheduled scans are no small bumps.

A whole-day affair it is.  After drawing blood for all kinds of tests, it is a succession of mammogram, breast ultrasound, CT-scan, and bone scan.  The bone scan requires three to four hours of waiting, as the injection needs to diffuse throughout all the bones in the body, so on top of all the small waits here and there between this and that at the hospital, there is also this interminable wait before the whole thing is over.  One could go home or out somewhere but I object to leaving the hospital because I know how much I would dislike coming back.  It's fortunate that whiling away hours in one spot with a book in hand is no problem for me.  So this interval is spent for lunch, reading, and some scrabble on my iPad.  It is a long day at the hospital: today I left home at 8:20 am and came home after 3:30 pm.

The fear of recurrence has become a constant companion in my life by now.  Good days are ordinarily the days when this companion makes itself scarce.  This, however, is the day when this fear takes the center stage; and it will claim my attention full on for a week.  The week between this day and the day when I go see the oncologist for the results is a strange borderland where this fear magnifies the fact that my life straddles the fantastic yet so very threatening dividing line between possibility and reality.

Le supplice du jour: the ultrasound is the biggest of all the ordeals.  As the radiologist slowly and steadily moves the cold, lubricated handle over the skin, you can feel every inch of your breast being seen through.  Any little pause and click that the radiologist makes with her machine seems to indicate something wrong.  Any typing that is being done into the machine might mean some noteworthy abnormality.  During the ten to fifteen minutes of this ultrasound scanning, you simply tighten up into a ridiculous mass of sheer vulnerability.  It is a maddening quarter of an hour where you experience your body not as a house of your life but as a dangerous host of antagonistic possibilities. This is the overwhelming moment you comprehend the simple yet elusive fact that the body is a heap of stuff over which you have no control.

The radiologist who ran the ultrasound on me today was a young male doctor who didn't say much.  There were some pauses and clicks, and of course all kinds of foreboding crowded my mind.  After he muttered "all done" and disappeared, I made a terrible mistake of looking at the monitor he left on.  In the complicated layout of data and pictures and what not on the screen, I saw my name, the date, and a few words that I well recognized.  Oh shit, is that another finding in my right breast?  It's like a lightening inside my head.  But it's hard to say what those words were for, as I could not clearly make out the rest of the screen.  Did he find something new today, or does it refer to the originary pathology for my regular scanning?

As I get out of the ultrasound room and get dressed, I am unable to focus.  It takes a few minutes to regroup.  Mechanically moving on to the CT-scan room, it occurs to me that the radiologist would hardly be able to specify whatever findings that he might have seen today as "malignant."  It is likely that those words I saw refer to my original diagnosis, since I was there for those scans as the patient with that diagnosis.  I reluctantly but cautiously feel my right breast and there is no distinct mass that I can discern.  Once again I tell myself that the radiologist could not have typed those words in.  There is no lump that I can feel.  Even if there was, he could not have determined the nature of whatever lump so precisely right then and there without a biopsy.  I carefully retrace the entire course of the examination.  He did not type much while examining the right breast.  I keep telling myself these things over and over like a mantra.  The more I think of it, the more I am convinced that it was my original diagnosis that probably has become my label.  Call it intuition or denial, it is good for now.  I should go with it, at least until I see my oncologist next week, although I am also carefully harboring that other possibility in one corner of my mind.  Yes, it is possible that he found something new today and wrote it down; I cannot rule that out.  I also know that something entirely different and unexpected may catch me by surprise, while I pore over what I saw on his computer screen.  As I sat in the waiting area in the CT-scan room, however, the fear gradually subsided even in my entangled mind.  Whatever it might be, if anything, there is nothing I can do but accept and deal with it.  For the rest of the day, I was able to put the fear aside.  For the rest of the day, I reminded myself of the resolution I had made to myself some time ago: I'll keep doing what I do for all the days I live, be they short or long.  In the hospital coffee shop, Martha Nussbaum's Poetic Justice keeps me good company.

As I live in constant fear, I realize over and over that fear is not sustainable, long term.  Our mind is clever enough to manipulate itself out of this dreadful state of fear.  It will desperately come up with some way to wriggle out out of it.  It will think of something, some reason that would nullify it or counterbalance it, even though the fear never disappears completely.  Coloring my life as a constant flirtation with the sublime is one way of doing it.  Braving the naked fact that my death would ultimately cause only very little disturbance to the world is another.  Honestly, though, it is not necessarily death itself that I fear most.  It is beyond fearful for sure, the absolute finality of it; but I mainly understand it to be the return to the state before my birth, and seen that way extinction doesn't seem so horrible.  It is the slow yet certain, incapacitating and painful, course of dying occasioned by difficult illnesses that I fear most.  Any one and every one will share this fear.  The difference is that my first-hand experience of cancer treatment lets this fear have a stronger and more real grip on me.  Picking things apart like this and becoming more aware of the nature of my own fear, however, doesn't help much.  Who could control her fate and choose the mode of her death?  Living with this shadow of death, this helplessness, this ultimate lack of choice, must be the essence of life; facing mortality is the burden of living itself that any conscious person should bear.  It is just that this burden is so very vividly felt in my daily life.  Perhaps I should be proud that I am living the essence of life, right in the very thick of it.  So there.  I repeat to myself: I'll keep doing what I do for all the days I live, be they short or long.  It is simple self-hypnosis, yet a surprisingly soothing therapy.  To keep doing what I do for all the days I live may not amount to much, but it certainly would be the best I could do and not the easiest, either.  Being able to go through with it would be something, at least to me, and finding out that I could would be a priceless solace.

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. 

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.

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. 

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.

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.