Meeting Expectations

I had my 3-weekly Herceptin treatment today, so I expect to be up all night. Insomnia is one of the side-effects of the drug. So I guess I’m not superhuman enough to be immune to ALL side effects, after all.

I ran into a fellow breast cancer patient at the oncologist’s office. She said she was feeling depressed and reacting very badly to chemotherapy. I thought she looked and sounded pretty strong so I told her so. I told her I have faith that she’ll come out of this with her strength and spirit in tact. I don’t know if she thinks I’m just being nice, but I don’t think anyone should underestimate the power of encouraging words.

I’m a skeptic about everything, so when friends and family say encouraging things to me (some of it cliche, some of it not even that convincing), I smile, thank them, and tell myself they’re just trying to be nice, but they’re optimistic because they have no idea just how bad my prognosis is or how bad it could get. But after hearing so many people tell me how well I look and how sure they are that I’ll beat cancer, my skepticism starts to wear thin and I find myself thinking that I’ll survive just to meet everyone’s expectations. Everyone tells me I’m going to beat it. I can’t let them down, can I?

A friend sent me a story about a man who suffers one misfortune after another and each time, he says that he faces a choice -- either wallow in sorrow and anger, or put a positive spin on it and get on with life. He chooses the latter and overcomes every horrible thing that comes his way with optimism. My friend mass-mailed this story to a bunch of people and added a note saying, “This is what Shin shows us everyday.” How can I be any other way when this is what people expect from me? And when I start to feel down, I tell myself that I can’t disappoint them. Forget about how I feel; what about all those people who are expecting me to be strong, cheerful, and brave? The thought of letting everyone down is sometimes worse than my own fear and misery.

I think we often meet the expectations of people around us, be they high or low. If your teachers and parents think you’ll amount to nothing, chances are you won’t. If they’re convinced you’ll be a success and convince you of it, then chances are you’ll be a success (however you define that term). I think if my doctors kept telling me I wasn’t going to last and my family and friends acted like I was dying, I wouldn’t last as long. But it doesn’t seem like anyone who knows me is thinking I’m going to die any day soon, even those close friends who have done the research and know what the statistics say. They might just be putting on the optimism for my sake, or for their own sake. But even then, it’s working. Faking optimism slowly becomes true optimism, until you realize one day that you don’t have to fake it anymore.

Holiday from Daily Life

We got back yesterday from a 9-day family holiday to Gili Trawangan near Bali, which was planned as a trip to celebrate the end of my cancer treatment.

A few times during the holiday, I wondered if I were making the most of this trip. I’d be lying alone on the massive canopied day bed on the terrace, feeling the cool breeze and listening to the waves on the beach, and wonder if I were supposed to come to some cathartic realization about the meaning of life, my mortality, the nature of the universe. Instead, I read novels and mindless magazines while munching on peanuts.

One morning, I woke up just before sunrise and thought I should go for a solitary walk on the beach to see the sun come up and have an introspective moment to ponder and reflect on my life. Isn’t someone in my situation supposed to have deep thoughts and take stock of her life -- the past, the future, hopes and dreams and such? I felt like I’d be forcing it. Plus, it was a bit chilly. So I stayed in bed and dozed off again instead.

Am I wasting precious time? Should I be searching for meaning, for God, or something bigger than my pre-cancer understanding of life? Or do I save that for when I really think I might die? Because these days, I’m too busy stressing about our house renovations, family finances, whether the kids are getting a balanced diet, whether I can fit all my activities into my days. I don’t have time for introspection. Maybe I’ll put that on my TO DO list for when I’m incapacitated and no longer have any choice but to lie in bed with nothing but my thoughts, whenever that may be.

Hope and Delusion

I sometimes wonder if I’m confusing hope with delusion. According to statistics, I have a 20% chance of being around in five years. Sometimes I’m convinced I’m in that 20%. Sometimes I ask myself if I’m living in denial. But day to day, I’m living with hope because I’m not acting like somebody who has less than five years to live, and no one is treating me like someone whose days are numbered.

We’ve just bought our very first house and are doing massive renovations. I’ve started training for a marathon, and since I figure it will take several years at least to be able to actually finish a marathon, I think this is fairly optimistic. I even bought some new clothes finally after several failed attempts (selecting items, then putting them all back thinking I was wasting money since I wouldn’t be around to wear them very long).

I’m not consciously thinking that I’ll live to be 50, 60, or 70. I wonder if people who are 70 or so look at the average life span for their demographic and say, “According to statistics, I only have five more years to live.” Of course these people know they won’t live forever, but if there’s nothing wrong with them, do they think that maybe they’ll just carry on indefinitely until something DOES go wrong with their bodies? Shouldn’t I live like that and assume that the cancer’s gone so I’ll live indefinitely until something happens later to tell me otherwise?

What Kids Know About Dying

I had a strange and sad conversation with Josie tonight as I was putting her to bed. It started with our usual routine with me telling her I’d love her forever.

Me: I love you and I always will. And if I’m not with you, where will I be?
Josie (tapping her chest with her hand): In my heart.
Me: That’s right. I’ll always be in your heart. Always and forever.
Josie: But what if you’re dead?
Me (long pause): I’ll still be with you in your heart.
Josie: But what if you’re dead?
Me: I’ll still be in your heart. I’ll always be in your heart no matter what.
Josie: But if you’re dead you won’t be able to get up.
Me: But I’ll still be in your heart. No matter what.

I’m not sure what a three-year-old knows about death and dying, but Josie has mentioned death in the usual context for kids -- the flower will die if you pick it off the bush; if you run into the street a car will crush you and you will die; kill the mosquito so it won’t get us. I don’t know if she would have said these things tonight if I didn’t have cancer or if she senses that I’m in danger of dying. Hard to tell. But it was a pretty matter-of-fact conversation -- not at all emotional. I was just stunned by her question. I think I handled it pretty well. I hope so.

Death and Panic

There’s been a lot in the news today about the terrorist attacks in the U.S. five years ago. As I listened to interviews of victims’ families and friends, I tried to imagine what it must have felt like to be standing at the window of an office in the World Trade Center tower after a plane had hit it. Would I accept that death was imminent and calmly resign myself to my fate? Would I run around in a blind panic trying to get out somehow? Would I pre-empt fate and jump out the window?

And what about the people on the plane that crashed into a field instead of its intended target? The passengers fought the hijackers and forced the plane down before it could get to a populated city and kill more people. Would I have tried to kill the hijackers to save more lives, even if it meant sure death for me? Would I have clung to hope that I’d get out of it alive?

I can’t imagine what mind-boggling terror and panic those people must have felt, knowing for sure they were going to die any second. They didn’t even have time to think about what was happening to them.

I know my days are numbered, but I have time to keep living a normal life, and even have the hope that I’ll live to a pretty decent life span. There are times I imagine what it might be like if my cancer comes back and no treatment will fix me. There I’d be in my hospital bed, knowing I had only hours or minutes left. I think I might panic. I’d want to cling to my kids and not let them go. But for their sake, I know I should put on a brave face and smile and leave them with a happy memory of my last moments. But knowing I’d never see them again, knowing they’d have to grow up without me, knowing that I was heading to a great unknown, I think I’d panic. I hope, though, that I’ll have the sense to jump out the window like some of the people in the World Trade Center towers did -- figuratively, of course.

Why Me? Why Them?

I never asked myself, “Why me?” after I was diagnosed with cancer. I don’t know if it was because I had so much else to think about, but the question just didn’t come up. Much later, people asked me if I asked myself “Why me?” But instead, I found myself asking, “Why not me?” I’m in a low risk category for breast cancer, and there’s no history in my family (I’ve read only 20% of cancers are genetic anyway), so I had every reason to ask why this was happening to me. But it just seemed an irrelevant question.

Once in a while, I learn of someone’s death -- someone who makes people around him happy and contributes something valuable to his community or society at large -- and I start to think, “Why him?” And then I think of other people who contribute nothing but misery to the world around them and think these people should die instead.

When I was in my twenties, I heard about a man at the local church who had died of cancer, leaving behind a wife and two very young children. I was single and childless at the time, working as a journalist but not the kind of journalism that makes a difference in anyone’s life. And I found myself thinking that if I could trade places with this man, I might do it. I didn’t have anyone who needed me as much as this man’s wife and kids needed him. Sure, I had family and friends who’d cry a lot and miss me, but that’s different from having kids who need a parent or a spouse who needs a partner in life.

Now that I have cancer myself and I have two young kids, if someone offered to trade places with me, I might accept. Sounds terrible, and I’m pretty sure I wouldn’t be able to actually let someone else die in my place, but I think I should do it for my kids.

If I were single with no kids, I think I’d be more willing to die. I’ve had a pretty good life. I’ve been very lucky, and I can say I’ve had my fair share of happiness and accept that I should exit the stage now.

But having two young kids changes everything. I need to stay alive long enough for them to know their mother. Even if it’s just in their memories, they need to have a mother. And I need enough time to make those memories. They shouldn’t have to grow up without their mom. So back to the original question... not “Why me?” but “Why them?”

[I sent this comment to Leroy Sievers, who is keeping a Blog on his cancer on the NPR (National Public Radio) Web site.]

First Post-Treatment Scans

I had my first post-chemo, post-radiation scans today to see if there’s any cancer left. I’m all clear. I had a chest X-ray to check the lungs and an abdominal ultrasound to check the liver. In 6 months, I’ll have a PET-CT scan to check lungs, lymph nodes, adrenal glands, and liver, plus a bone scan to check the bones. This next round of scans is more thorough, but they can’t do it too frequently because these scans expose me to more radiation. The X-Ray exposure is so little it’s negligible, the doctor said, but the PET-CT and bone scans expose me to quite a bit more radiation. That’s why she’s going to alternate the two sets of tests every 6 months so my exposure to each will only be once a year.

I’d read that 40% of the time that breast cancer spreads, it spreads to the brain. My doctor says that’s not quite right. She says spread, or metastasis, to bone, liver, lung are more common than brain, but for HER2 + patients like me, there’s a 10-20% chance of relapse in the brain as the first site of metastasis. That’s why doctors don’t scan the brain regularly. But she says if I want, I can have an MRI periodically. She also said I need to go to an OB/GYN at least every 9 months. I think that’s a bit lax, actually. From what I’ve read of the risk of ovarian cancer for breast cancer survivors, plus the fact that I had a cyst in my ovaries in one of my earlier scans, I should go get checked at least every 6 months, maybe even every 3 months.

I don’t want to be a hypochondriac, but given the advanced stage of my cancer I don’t want to take any chances. If I’d been MORE of a hypochondriac when I first felt the lump, I’d have a much higher chance of survival right now. That’s a mistake I’ll have to live with. I wouldn’t mind living with that for a very, very long time.

I’m relieved that my scans were clear. But I’m also aware that scans don’t show everything. My PET-CT scan after the first 3 cycles of chemo showed no sign of cancer in my body. My doctor said I was in “complete remission”. I was elated and amazed at the effectiveness of the chemo. Then I had surgery and the tissue they removed turned out to have cancer in it after all. Very microscopic cells, but there they were. If they’d been left in, they’d have spread and I’d have a recurrence. If that’s what “complete remission” means, it’s not entirely reassuring.

It’s frustrating that these scans that costs thousands of dollars, expose you to dangerous levels of radiation, and look and feel downright scary actually can’t tell you for certain that you’re cancer-free. They couldn’t even pick up a lump in my neck that a doctor could feel with his hands. Sometimes I wonder if I should just skip the scans, give my body a break from all that radiation, and just hope for the best. What if I’m actually INCREASING my risk of secondary cancer with all this radiation exposure? I’m certainly not at a loss for things to worry about.

Reconstruction Revisited

I went to see my reconstruction surgeon today for a post-radiation, pre-op consultation. He examined me and said the skin is healing well and I can have reconstruction done in early October. My options are to use implants, use tissue from my back, or tissue from my tummy. The last option is out, he said, because I don’t have enough fatty tissue there to transplant. Surprising, since I’m not asking for a D cup or anything even close, I thought I had enough flab there to cover me for a modest little A cup. But I suppose I should be happy I don’t have enough fat for even an A cup! I might have a similar problem with my back. Plus, if we used tissue from my back, I’d have yet more scars, not to mention mobility issues. I might not be able to swing a golf club anymore. Not that I can now, really.

I’ve decided to go with implants -- I don’t want any more of me cut up than is necessary. Also, it seems a bit weird to take bits from one part of my body and put it somewhere else. I’d be like a Frankenshin. Although if I’d been asked before all this happened whether I wanted fat from my tummy moved up to my breasts, I’d have jumped at the chance. But then I wouldn’t have thought about the cutting up of body parts, the risks, the side effects, etc.

So there it is. After all my adult life of wishing I had bigger boobs, I’m finally getting implants -- just to have the same size I always had. When I first learned that I’d have to have a mastectomy, I thought that at least I’d finally get to have the boobs I’d always wanted and go for a B cup at least. But it turns out it’s not quite that simple. Getting breast reconstruction is very different from getting a boob job. There are greater risks, the results aren’t as nice, and there are painful side effects. And people have told me implants only last 10-15 years. But according to the stats, I’ll last much less than that.

Now my goal is to outlast my implants. Gotta laugh about that.