I have a very love-hate relationship with the word hope. Because we hoped for better. And when hope for better is humbled in this way, do you just hope for better, again? That doesn't sound very logical.
How does one not get jealous, when you look around and all you see are peers who have no more substantial issues than essential oils for their children or how to improve their skin or which designer item to afford, or the general parade of hello world pictures, we couldn't be happier birth announcements and numerous twin pregnancies.
I know the world is not all, like that but it would also depress, not to mention traumatise me to read about sickness, poverty and desperation.
I also know that bitching about it wouldn't do me any good. But do I feel unlucky? Well, yes.
I didn't want a life more dramatic than an Asian serial. I really didn't. I didn't expect a very long life, don't ask me what I expected, I hadn't thought about it at 33, but I didn't expect a short life either, or one that counted down, or to be told at this age that my life needed prolonging. Particularly in a painful, soul-sucking, violent way. I didn't want to lose parts of my body, femininity, fertility and youthful innocence before a tenth of my thirties passed. It would always have felt too soon but breast cancer this young is rare.
I know there are no guarantees for anyone but I wanted a better expectation. I wanted an explanation. I wanted to grow old with my husband and children. I wanted a simple, family-orientated, productive life and career of comfort and ease.
Even people who live badly feel cheated. Let alone people who like me, are athletic, in shape, clean eating, non-drinking, non-smoking, disciplined and hard-working. My parents work out more than I do, at 64 and 74. I didn't even have private health insurance.
I was very lucky in many things. Lucky in my family, lucky to have parents who are dedicated, devoted and loving, lucky in my place of birth, lucky in my education, and lucky to love my education. Lucky to attend both Stanford and Harvard in some of the best years of my life, extraordinarily lucky to marry the love of my life, a patient, good-hearted man with a non-judgemental, earnest capacity to love, lucky to have a supportive employer and training, challenging work that allowed for travel, a house I love, and lucky to be well off enough to afford treatment and help. I will always find it ironic that I spent my teens studying so hard and my twenties working so hard, then getting this seriously sick just into my thirties. I don't want this to be the sum total of my life.
So that's where the easy luckiness in my life kind of ran out and I don't know how to react, that the rest of it is going to be hard and perhaps harder. In a few days, my entire world changed. Apparently, I had been given a lot of gifts, but years might not be one of them. I should see every day as a bonus. In an instant, I couldn't focus on work, I couldn't sleep, I couldn't be independent, or make simple decisions about what to buy, what to wear or how to move, it all seemed so irrelevant and I felt needy and immaterial to the world. I absorbed nothing, nothing of conversations and every time I woke, it was in grief, fear and panic.
From where I was, in a life that I liked a lot, I was being told I would be grateful for simple things like the birds chirping or how kind people can be. I was shell-shocked, additionally, by day 4 after diagnosis, I began frightening neo-adjuvant chemotherapy in which my physical strength and stamina were taking a beating. My white blood cell count went down to 2.7 (normal 4-12) which meant I was cooped up alone, at home and this would continue for months. Friends who were busy and unreliable with new homes, new babies or three young children stayed away and anyway couldn't comprehend what I was or complained about or maybe they felt I had just fallen by the wayside of unfortunate.
I also realize how much our previous experience of trying to overcome infertility pressurized and saddened me. As each of the last three years passed, it crystallized our longing and love for these children, that it felt an extension and deepening of my husband and my relationship and the sense that I really wanted this purpose. I had always been told by my mother, who was early menopausal at 39, that it would be difficult after 30 and while growing up, I had stayed often with couples who didn't have their own children and felt their homes emptier without that experience.
It left me with a distrust and frustration about my body, about doctors and their medicines, about success statistics. Even before we were given a cancer diagnosis, I had spent hours in traffic, shuttling between waiting rooms and clinics, taking their treatments and I was sick and tired of it. We were told different things by doctors about our chances, from 50%, or 5% or 15%, we were told by everyone around us that to just relax, it would surely happen, that things would get better, even while we saw how easy it was for most others. But every year of hoping, trying and waiting, as well as the attempts with IVF, were negative, drips of hope and potential, only to be steamrolled and it sowed the seeds of thinking, what if this doesn't work?
I was in gynaecological clinics regularly and constantly for over two years and I was initially told that breast pain was common with hormonal changes and IVF, but none of them detected the breast cancer until I insisted on tests. I felt like this was my fault for being desperate and reckless, that if I had been pregnant young, instead of in college, or changing boyfriends, or working so hard, or when we first got married, I would have had natural protection, that if we had waited to conceive naturally, things would have been different, even that my mother's predilection toward early menopause would have given me naturally improved chances against breast cancer risk.
We had moved ahead with adoption research and egg donor transfers, and it seemed like we were so close before our dreams were crushed. I started a support group for women dealing with infertility so that we'd all feel less negative and more comforted, and we celebrated that perhaps soon, it wouldn't even matter. As people who've been waiting do, we bought small baby items or received hand-me-downs, for luck. We went from rationalizing that we just had fewer options, to feeling like I didn't even have the time left for it, that we were losing everything even vaguely connected to it, that it would not be responsible for us even to hope. All around the house, I see papers littered with adoption documents, swabs, syringes, pregnancy tests, ovulation kits, egg donor dossiers, and numerous cards from agencies and doctors. Those represented time, effort, dedication, family, future and worse, hope. I think about all the time I spent days taking folic acid and drinking green kale juice (which people keep telling me is healthy and nutritious for me now), feeling then healthy and nutritious. What do I do with them, do I pack them all up, and give them away before they expire, to someone who might use them, someone whose body won't be mutilated beyond use for them? Thus started the fear that even against our choice or efforts, bad things could and might keep happening to us.
Given the rapid diagnosis and chemo, the experience of moving almost directly from treatment for infertility to treatment for cancer was brutal, the nail polish from my last support group presentation had barely grown out. The clinics are on the same floor. And sometimes when I approached it, I felt the same discouraging and surreal confusion, why is this happening to me, why am I doing this, what is supposed to happen, I don't want to fight this for the rest of my life, I don't want this to be how my life is.
I felt foolish and abnormal. There are 1700 cases of breast cancer in Singapore a year, fewer than 50 under 40 years old and 300 adoptions a year. How did I manage to be one of the former and now excluded from the latter, unless we are a rare country that doesn't have moratoriums for post-cancer? What kind of quality of life is there for me, when the only thing we really wanted is just even further down the road? When hope for better is humbled, do you just hope for better again? That doesn't make much sense.
Do I know where I'm going? I really, really don't. I didn't have a long-term plan before but I don't even know now if I'm meant to have a long-term plan and it makes all the difference — if you know you may not have a long term, then how do you make long-term plans? Am I scarred and scared? Absolutely, yes and I think I will be for a long time to come. I dread ever being back at this stage and in the terrifying and horrible treatment again. I have issues even reading bad newspaper stories about accidents and death because the trauma is when something this silent, bad and uncommon happens to you, you fear that everything is possible, or targeted and you feel vulnerable, waiting for the other shoe to fall.
I don't know if I have two years or twenty. I get people telling me about their mothers, but I haven't that luxury of age, nor is it a sensible or happy target for me to know they are fine a few years later. 5, or 10, or 20 years means a different thing when you're 66 or half that at 33, and so does the typology of older, menopausal breast cancer isn't the same as young breast cancer. It'd be more to the point if they could tell me they'd be sleeping peacefully if this were them or their young daughters right now.
The statistics of young breast cancer are sobering, they tend to be grade 3, which are the most aggressive and fast-growing cancers, with a higher probability of early recurrence. I am afraid of recurrence, metastasizing or secondary cancers or heart failure from the treatment itself. I sometimes wonder why I'm doing this if the exchange is more likely two years, five years or ten, as twenty or thirty.
Sometimes it still doesn't feel real and sometimes it does and I'm scared this is how I'll die and that it will be painful. Having breast cancer early is a fairly recent phenomenon and there are no readily available long-term or positive stories, not even from doctors. The prognosis is that 85% will be alive in 5 years and there are some stories of people at 16-24 years, but otherwise, almost every other story about breast cancer in the 30s that I find online and from the 32 years old-at-diagnosis volunteer at the Breast Cancer Foundation involves a recurrence and more treatment in under 5 years. I don't feel lucky to have escaped with my life and am too keenly aware that I really don't know that either, but I want to feel lucky to be able to continue to live my life.
I would love to have 28 years or look around at 70 and realize, hey, it made absolutely no difference, but I'm also realistic that your age kind of stacks longevity against you. The idea of not growing old with my husband or of children breaks my heart and I want to get to a stage of acceptance where I can feel that it's painful because it's worthwhile.
What do I hope? I hope to feel hopeful. I hope to have dreams. I hope to have time to see them fulfilled. I don't want my parents, my husband, or my family to be upset, but neither do I want to feel left behind when they bounce back into normalcy, telling me that 'life goes on'. I want to be able to support them and to feel or care for things that happen in the world again, not just to see everyone as cancer-free people.
I want to feel confident. I don't want to walk around, pick and choose food and feel out of control, or cagey. I want to feel like my life isn't tragic, even if it feels that way right now. I want to be able to sleep, a dreamless and deep sleep, and wake up feeling happy — not anxious, stressed, scared or sad and full of belief that my life will be full and not limited. I was already grateful and I don't want to look back in gratefulness, I want to look forward.
