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.