Thursday, July 31, 2008

Truth and Lies Before Dying

If you had only months to live, what would you say to the people you care about?

Here's the advice we hear a lot: Say what's in your heart. Tell the truth. If you have any old grudges or resentments, now is the time to clear them up. Don't leave anything unsaid.

I disagree.

If I said everything that was in my heart, if I told my family and friends the whole unvarnished truth about everything, if I resurrected old resentments just to clear my own slate, I'd leave behind some hurt, sad, offended people. I think all of us would.

We live a life of white lies and guarded thoughts. You tell your wife she looks great after her pregnancy even though she looks like a blimp. You tell your husband the sex was great even though you were less than satisfied. You tell your kids their artwork is fantastic even though it looks like chicken scratch. You tell your friend her muffins are delicious when they taste like cardboard. You tell your employee he's doing a good job, even as you're looking for a way to fire him. You tell the gas station attendant to have a nice day when you really don't care whether he does or not.

The fact is, we can't always tell the truth because some truths just shouldn't be told. There's no point in saying something that's only going to hurt somebody and add no value to anybody's life. Constructive criticism, yes. If your friend thinks her muffins are so great on your say-so that she's planning to invest her family's life savings on a muffin baking business, then you should probably tell her the truth about her tasteless muffins. Otherwise, you should say what's necessary to show her how much you appreciate her efforts.

Bringing up old grudges and resentments is a tricky one. It depends on the situation, but if opening old wounds is only going to make people feel worse, not better in the long run, then I see no reason to spend my valuable time at the end of my life making people feel terrible about themselves or me.

I think we should say what's in our hearts to the people we care about if what we have to say will give them peace, help them feel our love, and let them know how much they mean to us. The nasty stuff, we can take to our graves with us.

Wednesday, July 30, 2008

Paradise Declined

When somebody dies, why do people say that person has gone to "a better place"? Could somebody please tell me what this "better place" is? Is it a land of milk and honey where there is no pain or suffering, only angels serenading you with their harps? Is it a place where you can sit "on the right hand of God" and bask in his glory? These just don't appeal to me at all.

I have yet to hear a description of heaven or an afterlife that's better than what I have now. There is no better place than this one, with my husband and my kids.

If I were living in a famine-stricken land somewhere and had to watch my kids waste away from malnutrition, walk 30 kilometers each day to get a bucketful of clean water for them, and live in fear of warlords coming to slaughter my husband, rape me, and force my kids to become child soldiers, then yes, maybe I'd think of an afterlife, no matter how vague, as a better place to go.

But I have a comfortable life, a really nice guy for a husband, and healthy, happy kids. Sure, I could do without the cancer. I could even do with a few tweaks to Tony's and the kids' habits and behaviors. But for the most part, I have everything I need and want.

After I die, please don't say I've gone to a better place. No place is better if Tony and the kids aren't there. I don't want to be with God. I want to be with my family.

Tell me. What do you imagine heaven or the afterlife to be? What does it look like? What will you do there for eternity? I'm curious. Maybe I just don't have much of an imagination.

Tuesday, July 29, 2008

Life/Death Trade-Off Revisited

A blog reader asked if I really meant what I wrote in last week's post, Life and Death Trade-Off, when I said I'd use one wish granted by God to ask for the end of suffering for all of mankind rather than ask him to cure me of cancer.

I answered, "I don't really see how anyone could choose otherwise. One person versus all of mankind. Seems like a no-brainer to me."

Actually, maybe "no-brainer" was not quite right. It's my brain that would choose the world over me, while my heart would choose me over the rest of the world. If this were a purely logical decision, we'd all choose the good of many over one. But it's simplistic of me to think of this as a purely logical decision.

I suppose if I spoke with my heart and not my intellect, I'd agree with that blog reader and say, "To hell with the world! I want to be cured of cancer and want many more years with my children and husband." Of course I'd want to choose my own kids and husband over the multitude of faceless, nameless souls that make up humanity.

Sacrificing my own life (and hence, the happiness of my family and loved ones) for a mass of people I don't even know, is a choice I'd prefer never to be forced to make. But many people make this decision every day. Soldiers. Firemen. Policemen.

Think about the firefighters who ran into the second World Trade Center tower to rescue people inside. They'd already seen what happened to the first tower so they knew what they were running into. But they did it anyway. And those firefighters weren't even sacrificing themselves for something as grand as ending the suffering of all of mankind. They were doing it on the mere chance that they might find some people in there they could help. One life for a few strangers. Maybe.

That kind of daily sacrifice puts Jesus's ordeal into a bit of perspective. For God so loved the world, he gave his only son. How about... For the firefighter so loved a bunch of strangers, he gave his only life. For the soldier so loved his country, he gave his only life. For the missionary so loved his God, he gave his only life.

Looks like my thinking that I'd give up my life to save others doesn't make me such a great person after all. There are plenty of people who actually make such a sacrifice every day instead of just thinking and writing about it. And I say... better them than me.

Monday, July 28, 2008

Nervous Breakdown?

By unfortunate coincidence, just after last Thursday's blog post about behaving in a way that our kids can respect, I lost the plot and acted like a crazy person in front of Josie.

I'd taken Josie to see a doctor here in Korea, where we're on holiday, because she'd been complaining about her ear hurting. To make a long story short... I was struggling to understand the doctor with my meager Korean, my father was trying to translate for me, and Josie kept whining at me at the same time. I suddenly screamed at Josie like some sort of possessed woman, grabbed her out of the chair and shoved her outside, yelling at her that she couldn't come back in until I said so. Then I went back into the doctor's office and insulted the doctor, doing as much damage as I could with what little Korean language skills I had. My father had to spend more than fifteen minutes on damage control afterwards.

I don't know what got into me. I'd never spoken that way to Josie before or treated a stranger with such disrespect. Some of you might say, "Shin, you've been under a lot of stress, what with your cancer treatments and the looming fear of leaving your children; no wonder you had to let it all out at some point." Maybe. But I wish I hadn't chosen a visit to the doctor's office with my impressionable five-year-old daughter to go completely berserk.

The thing about being so clearly in the wrong about something is that the more you think about what a completely horrible thing you've done, the more upset you feel about it. I even tried to apologize to the doctor after I calmed down, but I just couldn't express what I wanted to. And by then, the doctor was so angry and upset, she was yelling at me.

To make things worse, shortly after the crazy episode was over and I was sitting outside the doctor's office in the waiting area, the cleaner went into her office and I could hear the doctor yelling something at him. Great, I thought. I've started a domino effect. That cleaner's probably going to go home to his wife and yell at her, she'll scream at her kids, and the kids will start fights with their friends, and then the whole thing will snowball until my temper tantrum has a ripple effect, bringing out the worst in dozens of people I don't even know.

I knew this uneasy feeling was going to fester and put me in a lousy mood until I did something about it. I thought of sending the doctor flowers or something silly like that. I figured I'll probably stand out in her mind and future stories as "that crazy woman who threw a fit at me", so I might as well balance that with "that crazy woman who went nuts and then sent me flowers". But I thought she might just think I was some kind of weirdo.

So in the end, I wrote her a letter in English, saying exactly what I wanted to say to her in apology but couldn't because of my elementary school Korean. Maybe she'll just crumple up the letter and curse me. Maybe she'll feel pity for my sorry self. But maybe, just maybe, she'll let my words of apology melt her angry, insulted ego so that she doesn't pass on that anger to anyone else.

As for the damage I did to myself in Josie's eyes... I'm hoping to bury that one-off incident with many other scenes of her mom being a rational, polite, kind person. Luckily, kids are more forgiving than adults. Luckily, I still have time to fix this.

Friday, July 25, 2008

Do It Anyway

I've been reading other cancer blogs by people with different kinds of cancer in Singapore, the U.S., and Europe. One woman whose blog I'd been following died a few months ago. Another just died last week. Another isn't doing so well now and is thinking about hospice, where terminally ill patients go to die.

The problem with reading cancer blogs is that sooner or later, the blogger will die. By reading their blogs, you're actually following them toward death, reading about their symptoms as they get worse and wondering how long they have left. It's disheartening. And if you have cancer yourself, you might feel like you're looking into your own future.

Maybe those of you with cancer who are reading my blog should stop. One of these days, you're going to come to this blog and read a message from Tony saying I've "finished the fight", "gone to a better place", "been freed from pain and suffering" or that "there's a new angel in heaven". These are all nice euphemisms, but I'll still be dead and you'll still be sad.

So let's break up now before we get too attached. It's not you; it's me.

But I guess that would be as silly as saying we shouldn't love since we could lose that love, or that we shouldn't live since we're all going to die anyway.

One fellow cancer blogger who died recently told me about a song that has now become one of my favorites. The song, Anyway, is by Martina McBride, a Christian country singer.

Enjoy the song and the great music video that goes with it. And enjoy your weekend. Yes, it will end and you'll have to go back to the same old grind on Monday. But enjoy these two days and what you can get out of them... anyway.

Thursday, July 24, 2008

Kids As Morality Check

Many cancer survivors say that cancer has made them better people. I'm not sure I can say the same for myself. But what has made me a better person is having kids.

Kids work as a moral compass. There are things you might do that are less than honest or kind-hearted when it's just you, but in front of your kids, you're bound to behave better.

I might be tempted to get snappy with the waitress who got my order wrong for the third time, but because the kids are with me, I speak kindly or joke about the mistake. I want to hurl expletives at the driver who cut me off on the road, but instead I say, "Whoa! That guy's in a hurry! I sure hope he gets where he's going safely!"

And little by little, I find myself skipping over the anger, and instead, feeling sympathy for the struggling waitress and really hoping that the speeding, reckless driver doesn't hurt himself or others on the road.

I go from acting the person I want my kids to see, to actually being the person my kids can respect.

If you ever find yourself debating whether or not something is passable in the moral sphere, thinking about your kids can help you decide. You might cheat or lie when nobody's looking, but you'd never teach your children that it's okay to cheat or lie.

I was once at a park with Josie when she was just over three years old. There was a charge for kids three and older, but entrance was free for kids under three. I told the attendant Josie was not yet three. Josie piped up, "But Mommy! I am three!"

Not only did I embarrass myself in front of the attendant, but my three-year-old called me on a bold-faced lie. All that to save five dollars. In the end, I lost the five bucks and my self-respect and the moral ground to teach Josie about telling lies.

It's not that big a stretch to say a little lie to get out of paying for park entry could lead to bigger lies like evading taxes. To an adult, it's just a silly little harmless lie. To a kid, a lie is a lie. We could probably do with more childhood simplicity when it comes to morality.

Wednesday, July 23, 2008

Life and Death Trade-Off

[I'm writing from Korea, where I'll be for the next nine days.]

I think I might have given people the wrong impression with my last post. I didn't want to make myself out to be some sort of saint who sacrifices her happiness for that of others. I am far, far from being any kind of saint.

My point was that I could think of many other people who need and want God's help, whose problems and heartaches are more urgent than mine. I don't feel desperate or depressed or abandoned by the universe. I'm actually happier than I've ever been in my life. That's partly due to the fact that my physical condition has improved dramatically in the past few months. But even when I thought the end was near, I didn't feel that anxious longing for a solution to my problems that many people I know are feeling.

In other words, if there is a God and he's listening, I'd like him to know that I'm doing okay, thank you very much. Please go help somebody else who really needs you.

That brings me to another thought...

What if I had one wish that God would grant me. Would it be that he'd cure me of cancer? Absolutely not.

What a waste of a wish that would be. If God is indeed all-powerful, I could wish for the end of all suffering and pain for all of mankind and I'd solve the world's problems in one fell swoop. If that were possible, who wouldn't wish for that over saving one person from cancer?

If you knew for a certainty that your death would save the rest of mankind from suffering, not just people who are alive now, but all of humanity for generations to come, of course you'd agree to die. That's not being a martyr; that's being smart and getting maximum power out of one human act.

Come to think of it, there was somebody who did give up his life for all of mankind. If Mel Gibson's imagination is anything like the truth, this man went through terrible physical torture - whipped, spear through his side, crown of thorns on his head, and nailed to a piece of wood and left to die - but in exchange, mankind would be saved.

Ah... and somehow, there is still suffering in this world that makes even Gibson's glorified snuff film look like a child's game.

Tuesday, July 22, 2008

My Prayer to God

I don't believe in God, so this is rhetorical.

Dear God,

First of all, thanks for listening to this prayer from a non-believer. Why am I praying to you if I don't believe you exist? Maybe for the same reason kids have imaginary friends.

I know there are a lot of people out there praying for me and asking you to cure me of cancer.

Don't listen to them.

Don't waste your efforts on me. I'm not asking you to save me. If that doesn't hurt your ego too much and you're still in a giving mood, here are some things I'd like to ask you to do for me instead.

I know a little girl with cancer. She's a great kid and she has a loving, kind family that exemplifies what anybody would consider good people. They add to the goodness of this world. Save this little girl instead.

I know a woman who has been trying to have a baby for many years. She has so much love to give that it's spilling over onto other people's children. She's the mother every child deserves to have. She would love and nurture her baby to add to the goodness of this world. Give this woman a baby instead.

I know a man who is dying of cancer, but he's using his last days to bring hope, encouragement, and peace to thousands of other cancer patients and their loved ones. He is adding to the goodness of this world. Save him instead.

I know a woman who has just lost her young son to cancer. She is distraught and cannot get through her days. She has a loving heart that adds to the goodness of this world. Save her instead.

I know a young man who has cancer. He's supposed to get married next month. His beautiful young fiancee is not spending the month before their big day planning a wedding that girls grow up dreaming about. Instead, she's sitting next to her fiance at the clinic, holding a plastic bag for him to vomit into as he gets his chemo treatment. This young couple deserves a chance at happiness, so they, too, can add to the goodness of this world. Save that young man instead.

I could go on with many others you could direct your attentions to, but I'll leave you with these for now. Thanks for listening.

Monday, July 21, 2008

Saved By A Preacher Man?

Last week, I went to church to be saved. Actually, I went to see if the preacher's claims to cure people were true. I went along with a Christian couple who invited me to their church to listen to a preacher from Nigeria who said he could cure me of cancer. My first question was, "Do I have to believe it for it to work?"

This has always been a problem for me with cures that only work if you believe in them. I don't like this Catch-22. No more than I like the Christian God's quid pro quo, "I'll save you if you believe in me." Whatever happened to unconditional love?

So I went to hear this preacher. I was expecting him to call me forward and lay his hands on my head and shout something up into the air about driving the devil and disease from my body - like they do on TV. I grew up watching TV evangelists like Jerry Falwell, Billy Graham, and Pat Robertson so I had a very clear image of what to expect.

Instead, this preacher went on for over an hour about being a soldier for Christ and being "militant" about Christianity. Yikes. Exactly the kind of bellicose talk that turns me away from all religions.

After the sermon, I excused myself and left. We'd just gotten into the car downstairs in the parking lot when the preacher and his wife came to us, brought down by a church member who had heard I had cancer and was looking to be cured. The preacher had a little bottle of aromatherapy oil (lemongrass, I think). He said he would "anoint" me and God would cure me of cancer. I said okay, great, let's do it! He dabbed some oil on my forehead and mumbled some words about God. Afterwards, he said to go tell my doctors that "their reports are wrong" and my cancer is gone.

Wow. That's some confidence. Does this preacher think that because he asked God to save some woman with cancer, God would do it? God would have let me die and leave my kids without a mother, but because this preacher man put in a good word for me, God's going to save me?

And do I believe God is going to cure me of cancer because of anything I do or say or believe? Even my arrogance doesn't reach that far. I'm just one woman. There are so many other people in this world God should be saving, so many other things he should be fixing before he gets to me. Children dying of starvation, women being raped, men being killed in war. I'd be happy to die if God would fix all those other things.

By the way, I've been feeling great lately and my scans have shown some signs of improvement. But this happened long before my visit to the preacher. In fact, I started feeling better shortly after I started this latest drug combination. I think that's one for medical science. But those of you who want to believe it's God doing this, don't forget that when I die. If you're going to believe God's saving me, you also have to believe it's his doing when I die.

Friday, July 18, 2008

Cure For Cancer?

I came across this funny article, "Absent-Minded Professor Says Cure for Cancer 'Around Here Somewhere'".

The story is from The Onion, a satirical news Web site based in the U.S.

Enjoy the article and enjoy your weekend, laughing.

Thursday, July 17, 2008

Who Lives, Who Dies?

Ethics riddle: After a shipwreck, there are two men left alive on a raft, but only enough food to keep one of them alive. One is a surgeon who saves dozens of lives a week and one is a construction worker. The surgeon is too busy with work to spend any time with his family, so he has a rather cold relationship with his wife and children. The construction worker is very much loved by his wife and kids. Which one would you save?

Most people I've asked this question to won't even answer. They say it's playing God to choose who lives and dies. It might be the ultimate arrogance, but I think I can choose.

- Between the surgeon and construction worker? The surgeon. He has the ability to save lives.
- Between the construction worker and Osama bin Laden? The construction worker. He has a positive impact on people.
- Between Osama and me? Me. I don't incite people to kill anybody (other than myself maybe).
- Between me and a five-year-old child? The child. I've had a chance at life. The child hasn't. (Now it's getting a bit harder, because we have to think about the pain my death would cause my kids versus the pain the child's death would cause his parents.)
- Between me and Tony? Tony. He can earn more money than I can, so he could provide a better quality of life for the kids. (Still harder because some people would argue that kids should have a mother, even if they live in a shack and have no access to good health care or an education.)

Of course, decisions about who should live or die are not this simple. There are many more reasons to think about than those I've listed here. But I think people are too afraid to play this ethics game because they're letting emotions get in the way of making tough choices. None of us would want to make decisions like this (except for the Osama vs. me decision, I hope). But hypothetically pondering this question forces you to look at what value you bring to your world.

P.S. "Playing God" is just a borrowed phrase. I don't believe even God makes choices like these. There's no way that a benevolent being would allow a terrorist to live while innocent children die.

Need-to-Know Basis

My brother and his kids were visiting from the U.S. recently and I happened to get into a conversation with my 8-year-old niece about global warming. I didn't call it that. I just told her we need to look after our planet or the things we see now, such as glaciers, will no longer be around when she got to be my age.

I showed the kids the part of Al Gore's documentary, An Inconvenient Truth, that shows photos of glaciers ten, twenty years ago compared to the way they look now. I told them that if this keeps up, soon there will be no more glaciers and no more ice in the ocean for polar bears to live on.

At this point, my brother cited a study showing that the polar bear population was actually growing, not shrinking. He also pointed out that if mankind is responsible for animal species becoming extinct, what about the dinosaurs? Man didn't have anything to do with the extinction of the biggest species of all.

Both are valid points that we should think about. We being adults. But I think kids this age (my nieces and nephew are 8, 9, and 11, and Josie and Toby are 5 and 3) just need to know enough to make them aware of the impact they have on the world around them. I wanted to give them information, albeit only part of the body of available information, that would contribute, rather than detract from the positive impact they could have on their environment.

It's true that there is murder, rape, suicide, and genocide in the world. Do I need to go out of my way to tell my kids about these things now? How will this knowledge add to their lives at this age? I believe in giving children information on a need-to-know basis. If it's not information that will move them forward in some way, then I see no reason to add it to their growing body of knowledge. They'll learn about skewed scientific studies, manipulative politicians, death and destruction soon enough.

For now, I just want my kids to know that they need to take care of their health, their planet, and the people they love. That's plenty of knowledge for them to work with right there.

Tuesday, July 15, 2008

Smart Heart

My history as a donor to charities started with a little Filipino boy named Albert Dunque. When I was a university student, I got junk mail from the Christian Children's Fund. Their brochures had photos of cute, chubby-cheeked kids standing barefoot in front of shacks made of cardboard boxes. I fell for the marketing and committed myself to sponsor little Albert for US$20 a month. In exchange, I got regular updates on Albert and his family and letters from the boy himself. We were pen pals for many years until I left the U.S. and had to hand over his sponsorship to a friend.

I don't know what my $20 really did for Albert and his family, but his letters made me feel I had the power to help a little boy on the other side of the world.

Charities spend millions of dollars making sure we see the sad eyes and hear the heart-breaking stories that make us fork over cash. Unfortunately, there are plenty of charities that spend more on fundraising and admin than they do on the people they're supposed to help.

Over the years, I've learned it takes smarts, not just heart, to make a difference.

I still donate to a number of charities. I choose ones that don't just give people what they need, but teach people how to get it for themselves. I also donate to my high school and my university. Those schools gave me financial aid when I needed it. I want to pay them back so other students with no money can have the same chance I had. I give money to local theater companies because I believe in supporting the efforts of people who earn a pittance making us laugh and think.

I also give money to friends who run marathons, walk across the country, or cycle crazy distances to raise money for the charity of their choice because that way, I get to support friends and a charitable cause in one swoop. The old "two for the price of one" gimmick works well here.

Here are some of the organizations I support:

International Medical Corps
My friend, Margaret, works for the IMC and vouches for its worthiness, so I trust it's a good organization. Plus, I read their annual reports and get updates on what they do with the money they get. I like the fact that their focus is on providing health care training to the most desperate parts of the world so that those people can help themselves.

The photographer who took my portrait photos for free apparently has a big heart for more than just cancer patients. He told me about this organization that allows donors to make micro-loans to micro-entrepreneurs. For example, you can lend $25 to a woman in Sri Lanka so she can buy some chickens and sell the eggs. When she pays back her loan, you get your money back. If you want, you can have that money passed on to another small business person. This allows a tiny bit of your money to make a huge difference to somebody, by giving them a chance to fend for themselves. Very smart.

National Multiple Sclerosis Society (Gateway Area Chapter in the U.S.)
My brother-in-law, David, is putting himself through rigorous training to cycle 100 miles this September to raise money for this charity. He's doing it in memory of his Uncle Jack and others who are suffering from MS. I have a friend who is living with MS, so I feel I'm supporting her indirectly as well.

Project Enlighten
A friend of mine has interviewed somebody from this charity and vouches for its good work. And a fellow cancer survivor whom I met through my blog is walking all over the U.K. to raise money for this charity, so I'm supporting her healthy lifestyle as well as this charity. Project Enlighten found a way to get aid into Burma (Myanmar) after the cyclone earlier this year, when huge, multinational charities were turned away by that country's military regime.

Environmental Working Group
This organization analyzes thousands of household and personal care products we use everyday for their effectiveness and chemical content. For example, I find their analysis and rating of sunscreens extremely helpful since our kids wear sunscreen almost every day here in sunny Singapore. That's a lot of exposure to potentially dangerous chemicals that might not even be blocking out the sun.

The Hunger Site
This very clever online charity uses the basic principles of online marketing to benefit the hungry around the world. You, the donor, click on this site and the corporate sponsors (online marketers) donate money for food to the hungry. In exchange, the marketer gets your "eyeballs", or exposure for their ads on the site. So donating to the hungry doesn't cost you a single penny. This is the smartest use of online marketing I've ever seen. They also have Web sites to benefit other causes: The Breast Cancer Site, Child Health, Literacy, Rainforest Conservation, Animal Rescue.

Here's a great Web site that evaluates charities based in the U.S.: The Charity Navigator. They study and rate charities on how well they spend their money. Before you donate any more money to your chosen charity, I suggest you look it up on this Web site to see how it rates.

Catholics believe in tithes - giving ten percent of their income to the Church. I'd rather give my money to organizations that are transparent and financially responsible, that actually spend the money on the people they claim to help. The Pope doesn't need any more gold-threaded robes.

Monday, July 14, 2008

Five Months to Three Years

That almost sounds like my prognosis after being diagnosed with breast cancer: five months to live if I didn't have any treatment or about three years if I had surgery, chemotherapy, and radiation therapy.

Actually, the title of this post refers to the age Toby was when I was first diagnosed, and the age he is today. Today is Toby's third birthday.

When I was first diagnosed with advanced cancer in December 2005, I was afraid I wouldn't make it to Toby's first birthday. I remember his first birthday party. I remember feeling grateful to still be alive.

By the time Toby turned two, I'd been through eleven months of treatment and my tumors had completely disappeared from the scans. The cancer was gone. I was fairly sure I'd live another ten, even twenty years. But one month after his second birthday, we learned that my cancer had come back. Then we learned I had tumors in my brain, liver, lungs, and bones. Living another ten years didn't seem so likely after all.

Now, it's Toby's third birthday and I'm back to feeling grateful to be alive, rather than assuming I'll be around for another ten years or more.

I don't want to get too greedy, but I'd be so happy to have just two more years. Toby will be five, and by then, he's sure to be old enough to remember me. Then I can tell him things that he'll be able to remember hearing from me later, on his own, without relying on stories second-hand. Then he'd be able to remember how my kisses felt or how hard I squeezed him when I hugged him. He could remember the way I smelled and the way I looked at him or smiled at him. He'd be able to remember things that the videos, photos, and journals can't show him; things that only he could remember on his own.

Just two more years. That's not too much to ask, is it?

Friday, July 11, 2008

Inspiring Videos

Here are three video clips people have sent me recently that I thought you might find as awe-inspiring as I do. These are the kind of people I hope my kids think of as heroes as they grow up. What they all have in common is guts - sheer inner strength, fighting attitude, confidence, faith. No self-pity, no excuses.

Adam Bender, an eight-year-old boy who plays catcher for a Little League team. Amazing, since he has only one leg. He lost the other leg to cancer when he was just a baby.

Team Hoyt, a father-and-son team that competes in marathons, triathlons, and Ironman competitions. What's extraordinary is that the son, Rick, has cerebral palsy and cannot walk. His father carries him in a special seat up front as he cycles, pulls him in a boat as he swims, and pushes him in a wheelchair as he runs in all of these events. Together, they've completed 218 triathlons, 6 Ironman competitions and 65 marathons.

Rose Siggins, a woman who literally has half a body - her body ends at the waist, so no hips, no legs. Despite that, she's given birth to two children and looks after them, as well as her father who's suffering from emphysema and Alzheimer's. She drives herself everywhere, cooks and cleans for her family, fixes and races cars, and does everything a person with a whole body does.

Enjoy your weekend, running around on two legs, having conversations with your kids, and walking down the street without people staring and pointing at you.

Thursday, July 10, 2008

I'm Not An Egg

Some friends and I were talking about kids and how we pass on our values to them. One friend mentioned that we teach our kids by example, over time. I said I don't have that luxury since I won't be around as they grow up. Her face just fell and she apologized for saying something so insensitive.

She had nothing to apologize for. In fact, I felt I should apologize for hijacking a normal conversation about parenting and injecting my impending death and doom into it. To me, the fact that I probably won't be around much longer is part of my life, not something to be hidden, denied, or tip-toed around.

When I think about enrolling Josie in school next year, I think things like, "Should I sign her up for the school bus or will I still be alive to drive her to school?" And I think these things as a matter of practicality and logistics, not a self-pitying look into my children's future without me.

I don't want my friends to be worried about saying the wrong thing or mentioning something that might be a touchy subject for somebody with cancer. I'm the same person I was before cancer and I won't break because somebody says something I should be sensitive about.

If you ever find yourself avoiding certain topics or editing yourself or watching your words around me, I'll tell you what I told my friend: Hey, it's me. Cancer or no cancer, I'm still me.

In fact, if I ever thought you were walking on eggshells with me, I'd be offended. So please be open and honest with me.

And just for fun, those of you who are cancer patients or are caregivers of patients, tell me about some of the things people have said to you that you've found insensitive or offensive. Let's see if they offend me.

Wednesday, July 9, 2008

"The Exorcist" and The Holocaust

When I was about twelve years old, our family watched the film, The Exorcist, together. I'm not sure why our parents thought it was okay for us kids to see this movie, but I assume it was because my father (a pastor) thought there was some religious lesson in it.

During the film, in which the demon-possessed girl floats above her bed, spews green vomit, and turns into a scary monster face, I asked my father if this were really possible. He said it was. That was pretty scary. Usually, when you see a scary movie, your parents reassure you by telling you that it's just a movie.

Another time, our family watched a documentary film about the Holocaust together. The black-and-white images of the piles of dead bodies being scooped up by bulldozers were etched in my mind forever. That was even scarier than The Exorcist, not because it was real, but because it was something people had done to other people, unlike the evil-doing demon in the other movie.

I think that Holocaust film was the first glimpse I got of human evil. Conrad's "the horror, the horror". If there's one moment in my childhood that I could point to as the crossing over from innocence to the knowledge of good and evil, this was it. I remember feeling as if the world were a different place from what I'd thought. Just knowing that people were capable of such horrific acts made the world an uncertain, unreliable, scary place.

This happened when I was about twelve years old. That's probably considered pretty old to be learning about genocide and evil by today's standards. I see video games today where blood squirts out of people when you shoot at them. A pile of dead bodies in grainy black-and-white is probably nothing to today's twelve-year-olds. And today's kids hear about genocide on the nightly news.

Now that I have kids of my own, I wonder about when and how they'll reach this moment of recognizing "the horror, the horror". If I were around as they grew up, I'd do what I could to keep them away from violent video games, horror movies, and any unnecessary exposure to the evil that lurks in the heart of man. But there's no way to protect them from some day recognizing evil in the world. That's a part of growing up and I wouldn't be doing them any favors by trying to keep that knowledge from them.

But I'm a mother and I can't help wishing I could keep such darkness out of their lives for as long as I can. Then again, I'm going to die on them, so I'll probably be responsible for the first exposure to darkness in their young lives.

Tuesday, July 8, 2008

Toby or Not Toby

Sorry. Couldn't resist the pun.

A smart guy I know has pointed out to me that some day, my kids will read my blog to see what I said about them. He did a search and found I mentioned Josie twice as often as I mentioned Toby.

I've thought about this as well. Part of the reason is that Josie is older and more verbal, so we have more discussions that I can talk about in my blog. Another is the usual second child syndrome - by the time kid number two comes along, the novelty of having kids has worn off and you don't act like every new thing the kid does is the first of its kind, since you know now for a fact that it's not.

I may not have as much to mention about Toby in my blog for these reasons, but he occupies a lot of my mind and heart space, especially since he's at a very adorable age right now.

Lately, I've tried imagining what Toby might be like as a teenager or a young adult. Try as I might, I just can't picture his creamy soft skin covered with pimples. Nor can I imagine him hanging out with the boys, drinking beer, and acting stupid. Not my Toby.

Toby likes to wiggle into my lap and plant little kisses on my face. He wants me to lie down with him when he goes to bed and wraps his arm around my neck so we can lie face-to-face and give each other tiny kisses as he falls asleep. How can this little boy ever become an obnoxious teenager or loud-mouthed young man?

I watch his coy smile, the funny way he runs, his hysterical laughter, his monologues, and I think about how much I'll miss all this when he grows out of this stage. I'm going to miss his little boy voice and laugh.

And, of course, I wonder if he'll remember me after I'm gone. If I die this year, chances are he won't remember me at all. Most people say their first memories are from age five or so. Toby will be three this month. That's probably too young to retain any memories. Hence, the journals and videos I'm making for him and Josie. But it would be nice if Toby could have some memories of me all to himself - little things he could remember about me on his own.

When I think of my kids growing up without me, I don't worry as much about Toby as I do about his older sister. I think he has a great role model in Tony and if he's anything like his Dad, he'll be the kind of guy every mother would want their daughter to marry.

By the way, it never occurred to Tony and me when naming Toby, that their names were similar enough to cause confusion. We should refer to them as Big To and Little To. I hope they have much more than their names in common.

Monday, July 7, 2008

Tumor Markers, Scans, Side Effects

My latest blood test shows my tumor markers have gone up since six weeks ago:
CA-125 up to 125.5 from 116.3 (normal range is <35.0).
CEA to 4.6 from 4.4 (normal is <4.7).
CA15-3 to 25.9 from 22.6 (normal is <25.0).
[N.B. Normal range varies slightly, depending on the lab. The normal ranges I've given here are those given by the lab that analyzed my blood sample.]

My liver ultrasound shows seven tumors, same as before, with no significant changes. The largest is 3.7 cm wide and the smallest is 1.36 cm. The lungs look the same, and so does my heart. Overall, my oncologist says my condition is "stable". She also says this chemo takes six to nine weeks to really kick in.

I've been extremely lucky in that I haven't suffered most of the side effects of chemotherapy. There was that bad spell back in March and April when I couldn't hold my head up and couldn't breathe properly. We thought that was the beginning of the end for me. But I've bounced back since then and have sent the oxygen machine back. I've also moved on to other chemo combinations.

I started on this current one of Xeloda (Capecitabine) + Herceptin + Tykerb a month ago and so far, side effects have been minimal. These are the physical symptoms I've been having:

- Itchy rash on face, but fairly mild, and lasted only a week or so.
- Itchy, red, tingly hands and feet - the dreaded Hand-Foot Syndrome, but a very mild case so far and it's just started to get better. The creases on the left hand and feet were splitting so it felt like I had tiny paper cuts between the fingers and at the creases of the joints. It was manageable as long as I kept putting moisturizer on so the skin didn't crack and split further. I've also had a few blisters on my feet and infections on four toes. I was on oral antibiotics for the infections and they feel much better now.
- Bleeding and tenderness inside nose, but went away after a week or so.
- Diarrhea, but not bad enough to cause dehydration. A very embarrassing, annoying side effect that makes it hard to get out much.
- Sore jaw, so I can't open my mouth too wide and hurts a bit when I chew.
- No mouth ulcers, but inner lining of mouth seemed to have gone so that I was very sensitive to even very mildly spicy foods. Toothpaste hurt as well. This problem just got better yesterday and I was able to eat Korean veggies marinated in chili! Oh joy!
- Very mild queasiness, especially just after taking Xeloda, but not bad enough to take medication for it. Not nearly as bad as morning sickness during pregnancy.
- My hair has started growing back, but not as thick and dense as it used to be. Instead of looking like a cancer patient, I look like I have a bad haircut.
- Coughing a bit, but mostly when I talk or laugh too much. Have learned incredible control over my gag reflex though and have not thrown up in a while now. No problems with breathing except I get easily winded if I walk too fast.
- Pain along my right chest and side when I cough, sneeze, or hiccup.
- Weight loss. I still can't get back the 5 kg (11 lbs.) I lost back in March, no matter how much fatty food I eat.
- Weaker and more tired than usual, but nothing like I was back in March. So I've gone from Speedy Gonzales to Eeyore in energy and movement.

If any of you have had chemo and have any information to share about these symptoms or this drug combination, please do!

Friday, July 4, 2008

Negative People

I'm back from my three-day holiday to Gili Trawangan, a teeny weeny island off the coast of Lombok, which is a tiny island off the coast of Bali. The holiday got off to a rocky start, but as I saw myself slipping into a bad mood, I consciously made a decision to "turn it around", as Josie often says to me. So I chose to ignore the negative and move on to the positive. It's easy to slip into negativity if we let ourselves.

Some people are just determined to see the negative side of everything. Here's a joke somebody sent me. Have a positive weekend! And for my American friends, Happy Independence Day!

A woman was at her hairdresser's getting her hair styled for a trip to Rome with her husband. She mentioned the trip to the hairdresser, who responded, "What airline are you flying?"

"We're taking Continental," was the reply. "We got a great rate!"

"Continental?" exclaimed the hairdresser. " That's a terrible airline. Their planes are old, their flight attendants are ugly, and they're always late. So, where are you staying in Rome?"

"We'll be at this exclusive little place over on Rome's Tiber River called 'Teste'."

"Don't go any further. I know that place. Everybody thinks its gonna be something special and exclusive, but it's really a dump, the worst hotel in the city! The rooms are small, the service is surly, and they're overpriced. So, whatcha' doing when you get there?"

"We're going to go to see the Vatican and we hope to see the Pope."

"That's rich," laughed the hairdresser. "You and a million other people trying to see him. He'll look the size of an ant. Boy, good luck on this lousy trip of yours. You're going to need it."

A month later, the woman again came in for a hairdo. The hairdresser asked her about her trip to Rome.

"It was wonderful," explained the woman, "not only were we on time in one of Continental's brand new planes, but it was overbooked, and they bumped us up to first class. The food and wine were wonderful, and I had a handsome 28-year-old steward who waited on me hand and foot.

And the hotel was great! They'd just finished a $5 million remodeling job, and now it's a jewel, the finest hotel in the city. They, too, were overbooked, so they apologized and gave us their owner's suite at no extra charge!"

"Well," muttered the hairdresser, "that's all well and good, but I know you didn't get to see the Pope."

"Actually, we were quite lucky, because as we toured the Vatican, a Swiss Guard tapped me on the shoulder, and explained that the Pope likes to meet some of the visitors, and if I'd be so kind as to step into his private room and wait, the Pope would personally greet me.

Sure enough, five minutes later, the Pope walked through the door and shook my hand! I knelt down and he spoke a few words to me."

"Oh, really! What'd he say?"

"He asked, 'Where'd you get the crappy hairdo?'"