Friday, May 30, 2008

Am I Really Obtuse?

A friend of mine called me "obtuse" because I said in an earlier Blog entry that cancer hasn't taught me anything I didn't already know. I'm sure he meant that in the best way possible, but it got me re-thinking.

I say RE-thinking, because I've thought about this over and over again for the past two years since I was diagnosed. Why hasn't cancer been a life-altering experience for me? Why hasn't cancer shattered my world or made me a better person or shaken the very foundations of my being?

My outlook on life, my belief in myself, my thoughts on religion, my appreciation for what I have - all of these were the same before cancer. Maybe I'm missing something.

So I'll turn the question over to those of you who know me. Have I changed in any way since I was diagnosed with cancer?

Anybody who hasn't spent any time with me in the past decade may not be able to answer this question, since I only became the person I am now about ten years ago, when I met Tony. He gets the credit for making me a decent person.

Thursday, May 29, 2008

Where Does Strength Come From?

I used to say I'm strong in facing cancer because I have no choice, but I realize now that that's not true. I do have a choice.

I know there are cancer patients who turn to despair and self-pity. Some are angry, dejected, hopeless, miserable. But maybe they wouldn't be if they had my family and friends.

I know several women whose husbands or boyfriends left them after they were diagnosed with cancer. I read about one woman whose husband, instead of being supportive and strong for her, turned to drugs and alcohol. I have a friend who had to deal with cancer treatment and a nasty divorce at the same time. I know another cancer patient whose friends stopped inviting her to dinner parties after word got around about her cancer.

I think these scenarios I've just described are worse than the cancer itself.

What if Tony left me? What if we ran out of money and our family refused to give us any financial help? What if all of our friends abandoned us or distanced themselves from us? What if I were completely alone with my cancer, with no husband, no friends, and two kids to support? Would I be this strong then? I'd like to think so, but I'm not sure.

I'm incredibly lucky that the only bad thing in my life is cancer. I have a husband who's handling my cancer just the way I need him to - with solid support, humor, and wisdom. I have two kids who are healthy, happy, and too cute for words. I have friends who have amazed me with their kindness and generosity. Maybe this doesn't say much about what I thought of them before my cancer, but I really didn't know just how wise and open-hearted our friends could be.

I have an extended family who seem to have forgotten or forgiven all my nastiness to them over the years and have stepped up to offer all kinds of love and support. I'm surrounded by mere acquaintances and even strangers who are offering encouragement and help with shopping, looking after my kids, getting me to doctors' appointments. And these are people who don't even know me.

Maybe this is why I have the strength. I can be strong because I have only cancer to fight, not the prejudices or insensitivity of others. I choose to be strong because I have family and friends who need, want, and expect me to be. And I owe it to them.

Wednesday, May 28, 2008

Natural Cancer Cures

Question from a blog reader: "I would like to hear what you think about natural cures for cancer."

The simple answer is, I don't think there's a natural cure for cancer. I think there are natural ways to help strengthen the immune system, improve digestion, cleanse the liver, reduce pain or inflammation, and ease various other physical ailments. There is scientific evidence that certain vitamins, minerals, antioxidants, proteins, enzymes, and chemicals in the food we eat aid our bodies in fighting all sorts of diseases, including cancer.

But do any of these actually cure cancer? Do any of these elements and the foods that contain them actually cause cancer cells to die and tumors to disappear? I don't think so. You could argue that they do, indirectly, since they can help strengthen the body to withstand the damage caused by cancer cells. But that's as close as food can get to curing cancer.

I think there are, however, natural ways to help cancer cells grow. There is plenty of scientific evidence that shows certain toxins and chemicals in the food we eat help feed cancer cells so they can grow and thrive inside our bodies. There are chemicals such as dioxin, aflatoxin, and acrylamide which have been scientifically shown to cause cancer. That is, these toxins make normal, healthy cells mutate and multiply out of control - this is what cancer is.

I think there are plenty of natural ways to reduce, but not eliminate, our risk for cancer. You could argue that reducing our consumption of or exposure to substances and foods that help cancer cells grow may be an indirect way we can "cure" cancer. By depriving cancer cells of the elements they need to thrive with adjustments in our diets and lifestyles, we could stop them from growing and multiplying enough to form tumors or spreading throughout the body.

How effective these two natural methods of fighting cancer are (boosting our body's ability to fight cancer cells and depriving cancer cells of what they need to grow) also depends on what stage of cancer you're talking about. If you have Stage I cancer, you're more likely to be able to fight it naturally with the two methods I've mentioned. But if you have Stage IV cancer, it might be harder.

Every cancer patient is different, and chemicals and nutrients may work differently from one patient to another. In my case, natural ways of fighting cancer might not be as effective since my cancer has progressed fairly rapidly and spread widely throughout my body. I was on a strict anti-cancer diet for the first two years after diagnosis, but that wasn't enough to keep my particularly aggressive cancer cells at bay.

So, no. I don't think there's a natural cure for cancer. But there are natural ways to fight cancer. Whether you win or lose that fight might have to do with what kind and stage of cancer you have, and what other factors you have on your side. But you'll never know whether or not you can win that fight if you don't try. I'm all for natural therapies and using food as medicine. But not instead of conventional medicine. Not when you have Stage IV cancer.

Tuesday, May 27, 2008

I'm Not That Great... Or Am I?

A blog reader wrote, "Please stop being so witty, so honest, so thoughtful, so strong, and such a good person through all of this. Being in awe of another person makes me feel inferior."

Let's break this down.

"Witty." Okay, I'll take that one without a fight.

"Honest." I'll take that one too, unless you consider lying by omission. You might think I'm great because most of what you know of me is from this blog. My friends who know me well know that I can be sarcastic, caustic, tactless, and painful. But I try not to be those things in this blog. It's one thing to let my nasty side leak out spontaneously; it's quite another to think it through and then put my meanness in writing.

"Thoughtful." That has two meanings: 1) Considerate and 2) Reflective. I try to be considerate but don't always succeed. Ask any of my family and friends whose birthdays I've forgotten or whose feelings I've hurt. As for the other definition, I'd say I'm more reflective than most. My brain doesn't stop going, so I'm constantly thinking about life, the universe, and everything.

"Strong." Yes, I think I'm stronger than the average person, before and after cancer diagnosis. I frown on weakness, especially my own, so I have to be strong.

"A good person." If "good" means I hold doors open for people and donate money to charity, then I'm good. If it means I'm always kind to my family and friends and think of others before I think of myself, then I'd say I fall a bit short.

"Being in awe of another person makes me feel inferior." I think about people I'm in awe of, and they don't make me feel inferior. They make me feel competitive. If they can be strong, then I can be stronger. If they can turn a horrible thing like cancer into an opportunity, then I can do even better. I can turn my life with cancer into a shining example for everybody to see. Or, at the very least, good material for off-color humor.

Monday, May 26, 2008

Peace and Success

I saw a documentary film last night called "Homeless FC", about a football team made up of homeless men in Hong Kong.

At the end of the film, one of the younger guys on the team decides to move out of the homeless shelter and go back to school. He says even after he finishes school, he might still be nothing more than a delivery man. He may not succeed, but at least he'll have tried. And then his dead mother can finally rest in peace.

That was the most touching part of the film for me. His mother had died when he was a boy, but he still thought she was worrying about him, and he believed he could make her happy by trying to improve his life. He still felt this connection with his mother who had been dead so many years.

And he didn't worry that his mother would be disappointed if he finished school and still didn't find a better job. He didn't feel his mother would think less of him for making nothing of his life. He just knew his mother would be proud of him for trying, no matter what bad luck or circumstances worked against him. He seemed at peace himself with this knowledge.

This is pretty surprising thinking, especially coming from a culture that puts so much value on financial, material, visible success.

I'd love for my kids to feel this way after I'm gone. I'd love for them to feel confident and loved enough to think that I'd be proud of them for trying, regardless of whether or not they achieved somebody's idea of success.

As I watched that scene where we hear this young man's thoughts at his mother's grave, I felt oddly proud of him, as if I were his mother. I was impressed that he was determined to try to improve his life, but even more impressed that he realized he would be okay whether or not he succeeded in the end.

If this were a Hollywood film instead of a real-life documentary, the guy would be setting a much loftier goal for himself and we'd leave the theater with the "Rocky" theme song ringing in our heads. Instead, this man's story and his goal in life were so simple and ordinary. I think that's what I found so touching about him and about this film.

[The film has one more showing in Singapore, on Sunday, June 1 at 9 p.m. It's really worth seeing.]

Friday, May 23, 2008

Tactless, Honest Q & A

There may be some questions you want to ask but don't, because you're not sure if they're appropriate. I won't say this for all cancer patients, but you can ask me anything that's on your mind, as long as it's not mean-spirited. So, here are some questions you might have, but haven't had the courage or tactlessness to ask:

1) How long do you have to live? Statistically, looking at average survival rates for my particular situation, anywhere from a few months to a year. By some counts, I should already be dead.

2) Are you afraid of dying? The process of dying worries me. But being dead, not at all. I'm counting on there being no afterlife.

3) When chemo makes your hair fall out, does all your hair fall out, not just the hair on your head? Yes. No bikini waxes needed.

4) Has cancer affected your sex life? Yes. As much as having two kids who keep coming into our room at night.

5) Can you have more children? No. The chemo I've had, plus my age, plus the fact that chemo has put me into early menopause make having more kids impossible for me. But some women can and do have kids after chemo.

6) Do you want your husband to remarry after you die? Yes, as long as she's not a bimbo and she's a good mother to my kids. I don't think any woman could love Tony and the kids as much as I do. But I'd love for somebody to spend the rest of her life trying.

7) How do you like your reconstructed fake boobs? Love them because I don't have to deal with wearing prostheses and worry about them slipping out or floating in the pool when I go swimming.

8) Do you think you did something to give yourself cancer? Yes. As much as anybody else - breathing polluted air, drinking polluted water, eating veggies and fruit with pesticides in/on them, eating meat and dairy products with growth hormones and other harmful chemicals in them, eating animal protein, smoking, drinking, not sleeping enough, not exercising enough, working and stressing too much, and just being alive in today's toxic environment. Read more in my past blog post, "What Causes Cancer?"

9) Have you thought about stopping treatment and just enjoying the time you have left without suffering the side effects of chemo? Yes. And if the side effects get too bad for me to enjoy being alive, I'll stop treatment.

10) Why don't you become a Christian now that you're facing death? That's a cop-out. If I were going to find God, I'd have done it long ago. My earlier posts, "God's Problem" and "Why I Am Not a Christian", as well as the accompanying comments address this question.

Any other questions I haven't thought of?

Thursday, May 22, 2008

How to React

Question from a blog reader: "How should people react when they find out that a friend has cancer?"

I don't think there's any standard one-size-fits-all response because every cancer patient is different. I've had all sorts of reactions: Bursting into tears, stunned silence, even a game of Twenty Questions (How did you find out? Is it in the early stages? Can it be treated? Is there a history of cancer in your family?)

The most common reaction seems to be, "I'm so sorry. Is there anything I can do?" I think every cancer patient would appreciate these thoughts. If you don't know what to say beyond that, just be there to listen. Tell them, "I don't know what to say. I'm afraid of saying the wrong thing."

If you think you've said the wrong thing, don't beat yourself up about it. I've had cancer for over two years now and even I didn't know what to say when my friend told me that her daughter had just been diagnosed. I choked up, teared up, and mumbled useless things.

I think just letting the person know you care and that you'd like to help in some way is enough.

That said, here are some things you should try to avoid when talking to a cancer patient:

1) Don't tell them stories about people you know who've had cancer and died.
2) Don't tell them about miracle cures and say they must try them.
3) Don't tell them God will heal them. God didn't promise he's going to heal anyone.
4) Don't accuse them of giving up if they don't try whatever crazy concoctions or exotic alternative therapies you've discovered on the Internet.

Keep in mind that cancer patients go through phases. When I was first diagnosed, I was ticked off by people referring to chemotherapy as "toxic poison". I didn't want to hear that the drugs they were putting into my body were toxic and poisonous. But now I realize I was being overly sensitive. Chemo is toxic. It is poisonous. But I wouldn't say that to a newly diagnosed cancer patient. It sounds too scary.

If someone had asked me how long I had to live just after I was diagnosed, I might have been offended. Now, I have no problem with that question. But I think I'm an exception. Most cancer patients would find that question offensive, no matter when you asked them.

Some people just don't want to talk about their cancer. Some want to talk about it all the time. Take your cue from them. If you're not sure, ask them, "Do you want to talk about it, or would you rather talk about something else?"

Imagine yourself as a cancer patient. What would you want people to say and do? That's usually a good guide in any situation.

Wednesday, May 21, 2008

Chemo Update

I had another dose of chemo yesterday: Liposomal Adriamycin + Herceptin + Tykerb. This is the one I had for the first time three weeks ago, which led to my sudden recovery with tumors shrinking and my breathing back to normal.

I had another round of scans last Friday (chest X-ray, abdominal ultrasound, echocardiogram) as well as a blood count, and went over the results with my doctor yesterday.

Chest X-ray: To check the lungs. The front view shows no change. The side view of the right lung, where most of the pain is and where the cancer initially started spreading, shows some improvement.

Abdominal ultrasound: To check the liver. The radiologist's report wasn't very clear, but it seemed to say there were fewer nodules (tumors) in this latest scan, but the larger nodules had not changed in size. My oncologist said she thought there were about 3-4 tumors visible in this latest scan, compared to the previous scan showing 7 tumors, several of which were 3 centimeters or more in diameter. She also pointed out that the film shows less contrast between the healthy liver tissue and the tumors in this latest scan, suggesting that the tumors might still be there, but they're starting to fade.

Echocardiogram: The chemo combination I'm getting is toxic to the heart, so I need to have an Echo fairly regularly. My LVEF, which is an indicator of how well my heart is pumping blood, was 60% in this latest Echo, compared to 65% on March 18. In a healthy heart, 50-75% of the blood is pumped out during each beat (Source: American Society of Echocardiography). This means the heart is able to deliver an adequate supply of blood to the body and brain. Many people with heart failure and heart disease pump out less than 50%. Heart failure (a.k.a. congestive heart failure) happens when the heart is unable to pump enough blood to provide adequate oxygen to the body. So I'm well within the normal range, but the LVEF has gone down 5 percentage points in two months, so we need to keep a close eye on this.

Blood count: All my counts were within normal range.

The plan: If I continue to show progress, I'll have two more doses of this current chemo combination, and then we'll switch to Xeloda + Herceptin + Tykerb. My doctor doesn't want me to stay on the Adriamycin for too long because of its cardiotoxicity.

Some good news: Preliminary reports came out last Friday for a clinical trial comparing Herceptin + Tykerb to Tykerb alone. Median progression-free survival was 12 weeks on the combo versus 8.1 weeks on Tykerb alone. This study didn't test these drugs with Adriamycin, which is what I'm getting, but it's still a good sign.

Tuesday, May 20, 2008

Loved and Admired

Question from a blog reader: "Do you find people are more affectionate around you, knowing you are sick and does it get intolerable or are you happy to know you are loved and admired?"

Yes, I think people are more affectionate around me and to me. I've seen friends treat each other more kindly than they used to, and I'd like to think it's partly because my cancer has helped them appreciate each other more. People are also more affectionate to me, because they think I'm going to die soon. But what if I live for another five years or more? Can you all keep this be-kind-to-Shin charade going for that long? Now there's a challenge.

"Intolerable" is a bit strong, but I do find it a bit tiresome to hear from people how wonderful and inspiring I am. I think a large part of that is because many of the people who are showering me with such lofty praise don't really know me.

On the other hand, when people tell me they've read something on my blog that helped them in some way, it means a great deal to me. That feels like real understanding and appreciation.

I think everyone would like to be loved and admired. But again, that only means something to me if the love and admiration come from true knowledge of me, warts and all.

Parents are often told to separate the behavior from the child when they criticize or scold. So don't say, "You're a naughty boy"; say, "That's a naughty thing you've done." That applies to adults as well. Maybe it's not me you love and admire, but particular aspects of my behavior in facing cancer that have made an impression on you.

Monday, May 19, 2008

Cancer Curmudgeon

Those of us with cancer or loved ones with cancer have come across things in Cancer World that annoy us. Here are some of my pet peeves:

1) Miracle cancer cures. Yes, miracles happen. But they're called miracles for a reason. Definition: "An extraordinary event in the physical world that surpasses all known human or natural powers and is ascribed to a supernatural cause." So let them happen if they're going to... supernaturally. Eating exotic roots and berries isn't going to make cancer cells go away. If they did, we'd all be eating roots and berries and nobody would have cancer.

2) Stories about those who didn't make it. I like hearing stories about cancer patients who beat the odds. But it really does me no good to hear about people who've died from cancer. Unless it's somebody I know, or somebody who was important to somebody I know, of course. But random stories about some lady in Kansas who died after going through every medical and alternative therapy imaginable and suffered an agonizingly painful death? Now, why do I need to know that?

3) Unthought-out and uninformed optimism. "You beat this before and you can beat it again." "You'll be cured." "You're going to live to be a hundred." I see the intent behind comments like these and I'm thankful for the sentiment. But let's be realistic. I didn't beat this before because hey, I've got cancer again and it's in my brain, lungs, liver, bones, soft tissue, lymph nodes, skin, and who knows where else that the scans can't pick up. The chances of me being cured of cancer is too silly to even contemplate. And no, I won't live to be a hundred. I don't want to live to be a hundred.

4) Unexamined cliches. "Live each day as if it were your last." "Appreciate every single second of your day." "Follow your dreams, no matter what." Again, I see the intent behind these comments, but I have to wonder if the people saying them even understand what they're saying. If you knew today was your last day alive, I doubt you'd spend it enjoying life. You're more likely to be in a wild panic. There are many seconds of the day that really aren't worth appreciating. Besides, stopping to appreciate every little thing would put your life into slow-motion. Following your dreams might mean that you make selfish decisions that affect your family and friends. You might have to drop or change your dreams. Of course these cliches are just words and not meant to be taken literally. I wish people wouldn't say them then. Say what you mean, not what you read on a Hallmark card.

5) Accusations that I'm being pessimistic or giving up. I've made out a Will and an Advance Directive. I'm preparing things to leave behind for my kids. I'm estimating my lifespan based on statistics, medical knowledge, and my own progress with treatment. I'm also allowing for the "Shin factor" and that I may indeed still be around way past my expiry date. But I'm planning otherwise, just in case. That doesn't mean I'm giving up. I'm being realistic and responsible. If you want to live in La-la Land and believe I'll be around to see my great-grandchildren, you go ahead. But don't push your fantasy on me or accuse me of giving up.

6) People telling me not to talk about my own death. I tell a friend I'd like her to tell my kids about this-or-that after I'm dead and I'm met with a remonstrative "Don't say that! You're not gonna die!" Denial. It ain't just a river in Egypt.

7) Morally bankrupt people like the person who stole the cancer books I donated to my doctor's office. I was planning to start a library in my oncologist's waiting room. I started with two books and I wrote on them, "Please do not remove. This book has been donated to patients for their use." What kind of person would steal books donated to cancer patients?

Tell me, folks In Cancer World. What are some of YOUR pet peeves?

Saturday, May 17, 2008

New Job

I've given myself a new job: Cancer Blogger. I'm going to write on this blog every weekday, Monday to Friday. That way, there will be some consistency and you'll know what to expect.

I know today is Saturday, but I'm making an exception to the five-day work week to remind friends in Singapore about Shear Inspiration, a fundraiser for the Children's Cancer Foundation tonight.

There will be drinks, nibblies, a lucky draw, and an auction to shave some beautiful ladies' heads.

Venue: Rogues, 146 Market Street
Time: 7:30 p.m. till late
Tickets: $75 (You can get tickets at the door. All of the money goes to the CCF.)

Tony and I are taking some friends with us so we can't offer you a ride, but we'd love to see you there.

Friday, May 16, 2008

Reader Survey

Some friends and regular readers of my blog have asked me to conduct a reader survey. Could you indulge them and my own curiosity by answering the following questions for me?

FYI - Comments you post on my blog don't immediately appear on the site. When you post a comment, it comes to me in an e-mail. I then publish it and it appears on the site, or I reject it and it does not appear on the site.

So... if you don't want your survey answers to be posted, please write DO NOT POST and I will simply have a look at your answers but not post them. As always, you can choose to answer anonymously, whether your answer is posted or not posted.

Thanks!

Survey questions:

1) Who are you? (Answer this any way you'd like, e.g., name, profession, nationality, relationship to me, etc.)
2) How did you find my blog?
3) How often do you check my blog?
4) Why do you read my blog?
5) Do you have any questions or issues you would like me to address in future blog entries?

Thursday, May 15, 2008

Death, Lies, and Cancer

A friend of mine told me his ex-boss died recently of cancer. He said the man was mean, hateful, egotistical, selfish, and had abandoned two families and was generally despised by his employees. But after he died, people spoke very highly of him.

I hope that doesn't happen to me. I hope people who hate me don't start lying after I'm dead and make up nice things to say about me just because I'm dead.

Or worse... I hope people aren't making up nice things to say to and about me now just because I have cancer. Cancer might make some people better human beings, but that hasn't necessarily happened to me. Somebody once described me as "a bitch on wheels going full speed". My answer was, "You say I'm a bitch like it's a BAD thing."

That was a long time ago and I've mellowed since then, but I'm sure there are still some people who know me who don't have nice things to say about me.

So I asked my friend to tell me things he dislikes about me. He wanted to know why I'd want to know such things. My answer: Isn't it better for me to know what people find annoying or unlikeable about me while I'm still alive and can do something about it rather than after I'm dead and can do nothing about it?

This doesn't mean that if you tell me you don't like something I do, I'm going to stop doing it just because you don't like it. But you have a better chance of changing me now than when I'm dead.

If you tell me you don't like it when I correct your grammar, I'll try really hard to stop. But if you tell me you don't like me making fun of people who spend $65,000 on a handbag, too bad.

And if any of you reading this blog has a $65,000 handbag in your closet, may I suggest you come with me this Saturday night to the fundraiser for the Children's Cancer Foundation?

Wednesday, May 14, 2008

GMO Parenting

I was watching a movie with Josie one day and there was a bully in the movie who picked on little kids. I asked Josie what she would do if she were one of the kids being bullied. She said she'd walk away. I told her I'd punch the bully in the nose, but that I'd be wrong and she, Josie, would be right.

I'm sure every parent, teacher, child psychologist, store clerk, street cleaner is appalled at my lack of parenting wisdom. But here's something I've learned recently as I think about what I'd like my kids to know about me after I'm gone: I'm not perfect but I'll try to be honest, even when it makes me look bad.

I want my kids to know that they're not me and that I don't WANT them to be me. I see parenting as a sort of genetic modification of personalities. Take the best traits of each of the parents to create a better human being.

When Josie was born, I told Tony, "I hope she takes after you in every way, except her skin." I wanted her to be kind, gentle, and patient like him, not a fireball of a devil like me. Tony just said, "Why? What's wrong with my skin?"

I hope our kids have Tony's patience, tolerance, calm, and wisdom. I hope they have my smarts, inner strength, self-reliance, and confidence. And my skin. But not my cancer. Definitely not my cancer.

Tuesday, May 13, 2008

Imagination and Cynicism

One night, shortly after I was diagnosed with cancer, I was rocking Toby back to sleep. He was just five months old then. As I walked back and forth in the dark, holding him in my arms, I tried to imagine how I'd feel if it were Toby who had cancer instead of me.

I forced myself to imagine holding his tiny arm out so the nurse could put the cannula in for the chemo. I forced myself to picture him lying in a little hospital crib with an IV drip attached to his arm. I forced myself to imagine every detail of the cancer experience happening to my five-month-old baby instead of me. I did this until I was crying in the dark, clutching Toby tightly against my chest.

Then I said in my mind, "Please, please let me have cancer instead of Toby. I can handle all the scans, the needles and chemo. I can handle the pain and nausea, the surgery, the radiation. I'll do all of it. Just please let me have cancer instead of Toby." And then I snapped myself out of it and my wish had come true. I had cancer and Toby was fine. I cried happy tears then and thanked whatever spirit was listening for sparing my baby and letting me have cancer instead. I was so relieved and happy.

I know this sounds like a sick game to play, but I've done this throughout my life. I've gone through tragedies in my mind in minute, graphic detail to make myself feel the agony and heartache. Then I could bring myself out of it, like coming out of a hypnotic trance, and be grateful that whatever horrific scenario I'd made myself imagine wasn't really happening to me. This would make me appreciate my life, as well as give me some insight into how somebody who was actually suffering the awful experience was feeling. It taught me gratitude and sympathy.

I ran into a friend yesterday whom I hadn't seen for a while. Her two daughters used to play with Josie and Toby often. I was so happy to see her, but she didn't have her girls with her. Then she told me her younger daughter, who's turning three soon, had just been diagnosed with leukemia. She started chemo last week. She'll have chemo twice a week for eight months.

My friend told me a social worker from the Children's Cancer Foundation visited them in the hospital and provided them with information and a support network. She said the CCF was very helpful to her and her family.

This is the same Children's Cancer Foundation that my friend, Sabrina, is shaving her hair off to raise money for this Saturday; the same organization that I raised money for a few years ago. Before, my support for the CCF and for Sabrina was for some faceless, nameless children out there with cancer. But now it's for a little girl I know and adore, a little girl who used to chase Toby around my house, a little girl who used to give me hugs and kisses and make me laugh with her cheeky smiles.

I'd like you to try something. Picture your own child with a chemo IV drip in her arm; picture her hair falling out in clumps; see her lying in a hospital bed, pale and listless. Then imagine yourself taking out a second mortgage on the house, pulling your other kids out of their private schools, selling the family car, so you can pay for chemo. Picture yourself saying to the doctor, "We can't pay for this. Is there another, cheaper drug that can help our daughter?" Visit somebody else's nightmare for just a few minutes and pray that it never becomes real for you.

If we could all do this, maybe we could get around the cynicism that gets in the way of our natural human instinct to help other people. I'm the biggest cynic I know, but I'll keep insisting that we human beings ARE inherently good and we can do good things if given the chance. Unfortunately, that chance sometimes comes in the form of a tragedy like cancer. But you don't have to wait for that tragedy to happen to you.

[P.S. I'm too upset about my friend's daughter to write about her. The only way I can write about this now is to think about the coincidence that I'm trying to help raise money for the CCF and now my friend's family is going to benefit from the help the CCF provides. Luckily, my friend doesn't need financial help, but the CCF provides much more than that. This might seem a bit cold-hearted, but I can't write about what this little girl and her family are facing right now. Maybe I can write about it later.]

Monday, May 12, 2008

Mind Game

I think I might be cured. Okay, I know I'm not, but I'm feeling so good these days, I have to wonder what's going on. My breathing is fine, my coughing is at a minimum, and my chest pains are completely tolerable, thanks to all the codeine I'm taking. The lumps on my chest and neck have shrunk so much, I have to work really hard to feel them at all.

On Saturday, I went cycling in the park with Tony and the kids in the morning. And in the afternoon, we went to the driving range and I hit some golf balls. I didn't do well so with the driver, but I was okay with the six iron.

Brief interruption for a joke: If you ever get caught on a golf course during a lightning storm, hold up your one iron, because even God can't hit a one iron.

Back to the blog... Cycling? Hitting golf balls? Just last month, I had aches in my neck and shoulders from the effort of holding my head up. I couldn't walk across the room without losing my breath. I couldn't lift myself out of bed without wincing in pain. I couldn't even blow my nose because I didn't have the strength to exhale that much breath out of my nose.

How did I go from that... to this?

At that time, I thought, "This could be the beginning of the end." I thought about whether I should die at home or in a hospital. I thought about whether I'd written to my kids about everything I'd wanted to. I thought about whether I should buy more of my face cleanser that's running out and decided I didn't need to, since I might not be alive to use it.

Lately, I've been feeling so good, I haven't been thinking about hospices, I haven't been writing to the kids, and I've decided to buy more face cleanser.

This is how cancer can play tricks on the mind. You feel great physically, so you don't think about cancer. You might even start making plans for the future. Then you have a bad week or two and you think about wills and euthanasia. From planning family holidays to planning funerals.

All the while, those cancer cells are doing their own thing. They don't know or care about your plans. They'll keep multiplying, get hit by chemo and slow down, then recoup and resume, and so on.

I know this normal me probably won't last. I know that cancer cells become resistant to drugs and that they're more likely to develop resistance with each new drug introduced to the body. I know I could be lured into a false sense of security and then be dead in a few weeks. It's happened to a few people I know.

But it really is hard to take dying seriously when I'm feeling so good.

Friday, May 9, 2008

Shear Inspiration

This is my friend Sabrina. Check out the gorgeous long hair. On May 17, she's going to say good-bye to her silky strands to raise money for the Children's Cancer Foundation here in Singapore.  

She and a bunch of other women are going to have their heads shaved in an event called "Shear Inspiration".  

Last year 20 women in Singapore shaved their heads and raised $320,000 for the CCF to build and equip two new bone marrow rooms in KK Women’s and Children’s Hospital, where Sabrina used to work. 

Click HERE to find out more about the events on May 16 and 17 and to see a photo of the 20 women who shaved their heads last year in all their bald glory.

I'll be going to the Shear Inspiration Party at Rogues on May 17.  Call Sabrina at the number below to arrange tickets ($75, all of which goes to CCF) . You can even bid to shave her head or get a free hair cut yourself. 

If you can't make it to the party, here are other ways to support Sabrina in her efforts to raise money for children with cancer:

1) Click HERE to make a donation to the CCF online.  Select "Sabrina Kuah" in the drop-down menu.  The CCF will have to pay the transaction fee and GST, so really, 9.5% of your donation will NOT go to children with cancer.  If you live outside of Singapore, you'll have to donate online. But if you live in Singapore, the other options is...

2) Send a cheque payable to "Children's Cancer Foundation" to:

Sabrina Kuah
9 Bodmin Drive
Singapore  559609

If you want to claim tax exemption, write your NRIC number on the back of the cheque. 

If you have any questions, here are Sabrina's contacts:

Mobile:  (65) 9273-9221
E-mail:  rsimuk@usa.net

They're still looking for volunteers, so if you have the guts, join Sabrina and the other ladies and have your head shaved too. I had my head shaved two years ago for another event, and many of you helped me raise more than $17,000 for the CCF. I wanted to volunteer again but I have no hair to shave, so the best I can do is support other women who are going under the razor.

Here' s an interesting thing I've learned since being diagnosed with cancer: women are really attached to their hair.  Some women forego chemotherapy because they'd rather risk dying of cancer than be bald.  One woman said she didn't mind losing her breasts to cancer, but she didn't want to lose her hair.  Amazing. 

So just imagine these women having their heads shaved not because they HAVE to, to save their own lives, but because they WANT to, to help save the lives of kids they don't even know. Truly amazing.  

My hat's (and hair) off to these ladies!

Thursday, May 8, 2008

Fairness to Doctors

I'm writing this Blog entry in response to an anonymous reader who posted a comment regarding the generally negative way people view doctors, on my March 15 Blog entry titled, "Sign From God?"

During my two years of cancer, I've been alarmed at how many patients just entrust their lives to their doctors without ever questioning or seeking information to educate themselves about their own conditions. I've also been surprised at how cynical and negative some people are about doctors, accusing them of being incompetent, heartless, or motivated by money rather than compassion.

I've worked hard to find a team of doctors who are competent, compassionate, and, I believe, have my best interests at heart. My mastectomy surgeon and oncologist, especially, have shown me what is truly honorable about this profession. I know doctors get a bad rap for their arrogance, but these two doctors have never let their egos get in the way of offering me the best treatment they could, no matter how many times I questioned or disagreed with them. To me, that's a sign of not just compassion, but true intelligence and wisdom.

But I'm not their only patient. They treat dozens, maybe a hundred patients a week and they can make the occasional mistakes or can be a bit brusque and hurried at times. They're human.

We're all guinea pigs every time we try something new. I don't think that's necessarily a derogatory or incorrect characterization. In oncology, doctors are sometimes forced to try new treatments on their patients without the safety net of a long and proven track record. Cancer research can be so fast-paced and studies and results so skewed and open to interpretation, it's up to the doctor to find the best choices he can offer his patients. AND it's up to the patient to investigate these choices and participate in the decision-making process.

My doctors have tried a number of unproven treatments on me. Some of them have worked and some have not. But I never felt my doctors were putting my life at unnecessary risk. They provided me with ample information and answered all my questions about the risks we'd be taking and allowed me full participation in the decision. If it hadn't been a two-way process, I'd be leaving the entire decision and the burden of responsibility on the doctors, and that's not fair to them.

I don't think all doctors are out to make money, but sadly, there are enough out there to give the rest of the profession a bad reputation. I, for one, have come across doctors whom I suspect are digging into their own profits to offer discounted treatments to patients.

The best medical care requires participation from both sides. Doctors have years of medical education, training, and experience that no amount of research I can do will match. I have years of living in my own body and knowledge of how I physically feel that no amount of medical training will match.

I think patients should take some responsibility for their treatment. It's a doctor's job, but it's the patient's life. Job versus life. Who has a greater stake in the outcome?

Wednesday, May 7, 2008

Superheroes

I saw the movie, "Iron Man", a few days ago. My kids are going to see this movie some day when they're older and, like most kids, they'll be really impressed by the hero's ability to fly at supersonic speed and shoot missiles out of his arms. But I hope that's not what makes them think of this guy as a hero. I hope they see him as a hero because he's using his extraordinary powers to help save people.

I once showed Josie an edition of Forbes Magazine featuring the top philanthropists in Asia. I told her, "These are superheroes." She looked at the photos of the businessmen and women and looked up at me quizzically. Where were their superhero costumes and capes? I explained to her that these people couldn't fly or knock down buildings, but they had extraordinary powers - money, fame - and they were using their powers to help save people. I don't know if it registered, but maybe some day it will.

Here are some of my heroes: Oprah, Angelina Jolie, Brad Pitt, Bill Gates, Warren Buffet, Chris Gardner. What do these people have in common? They're all rich and famous. But that's not why I admire them. All of these people are using their wealth and fame to do a lot of good for a lot of people they don't even know. They're all incredibly smart; smart enough to make a truckload of money and smart enough to use that money to help others.

Maybe they're doing all their charity work for self-serving purposes. Who cares? If Oprah wants to set up foundations to boost her own public image and win her a positive place in history, good for her. But if these foundations help underprivileged children get an education and opportunities they wouldn't otherwise have, then good for the world.

Here's another superhero movie I'd like to see: "Homeless FC".  It's a documentary about a soccer team made up of homeless people in Hong Kong. Nobody leaping over tall buildings or saving the world from villains, but I've read a bit about the film and it sounds like a movie about heroes.   [I'm going to see the film on May 17 or 25.  If you're in Singapore, come with me.]

The two directors are ex-colleagues of mine.  This is their third documentary.  The first two were about East Timor and Cambodia.  They're now working on a documentary about a shoeshine boy from Kenya who wants to ride in the Tour de France.  These two directors work on shoestring budgets to tell the stories of people who are insignificant by most of the world's standards.

When I think of superheroes, I think of qualities that make me feel there is hope in the world because they exist.  

I'm so glad people are making films like this and telling stories about people like this. I think there's hope in the world because people like this exist.  (I'm talking about the documentaries, not "Iron Man".)

What Cancer Has Taught Me

I read Leroy Sievers's "My Cancer" Blog every day.  Sievers is an American journalist who's been writing about his cancer experience on the NPR (National Public Radio) Web site.  He's smart, thoughtful, and articulate.  He's developed quite a following of cancer survivors and caregivers who are also quite intelligent and eloquent. 

Last week, he asked his readers to tell him how cancer changed their lives.  He asked them to finish the sentence, "My cancer...", and he received more than 360 responses.

The overwhelming majority of people said their cancer taught them to appreciate life.  I have to wonder about these people. Why didn't they appreciate their lives BEFORE cancer? Sad.

A few very honest people said cancer showed them how callous people can be, how weak their bodies can be, how painful life can be.  Very sad. 

One woman said cancer taught her valuable life lessons, but she'd have been happy to learn them from a book instead.  Another said her cancer stole her children's innocence.  

I didn't write in, but here's my response:

My cancer... didn't teach me very much about life, the universe, and everything that I didn't already  know.  It didn't make me appreciate all the wonderful things in my life any more than I already did.  It didn't show me what a great husband I had because I already knew that.  It didn't make me realize what a strong person I was because I already knew that too.  Cancer didn't teach or show me much that I didn't already know.  Unless you count medical knowledge about the disease itself.

BUT... My cancer seems to have taught the people who know me all of the above about themselves.  Many of my friends have told me how much more they appreciate the little things in life, how much they've learned about the importance of love and faith, how much more grateful they are for everything they have.

I'm happy about this.  I think my cancer has done a lot of good for a lot of people who know me.  And because it's had this impact on other people, my cancer as had a positive impact on me.  I've learned how generous and thoughtful people can be - not just our friends, but mere acquaintances and even strangers.  I've come to see what good there is in people's hearts if only given the chance.  I've realized what an incredible group of friends we have and how lucky we are to know so many kind-hearted, smart, generous people.  

So, to answer Sievers's question...  My cancer has brought some amazing people into focus. 

Monday, May 5, 2008

Death 101

Yesterday, we had a good-bye ceremony for the two goldfish Tony had gotten for the kids several days ago. They died after just two days. I was so creeped out by the very thought of the fish floating belly-up in the water, I couldn't even look at them. Tony said he's glad the kids are taking this better than I am.

I never really had pets as a kid. We had a little kitten once that followed my brother home. My sister and I spent our entire life savings buying cat food, kitty litter, kitty bed, shampoo, and medicine. After just a few days, Kitty died in my arms. I swore I'd never have a pet again. It seems an unnecessary heartache.

Animals have a shorter lifespan than we do, so any pets we have are only going to die on us. So why have them at all? Don't tell me about unconditional love, companionship and all that stuff. I don't need animals for that, especially if they're just going to die on me.

I don't want our kids to have any pets either, for the same reasons. But Josie and Toby said a little prayer, flushed the fish down the toilet, and skipped away to play. I couldn't even look.

I know you're all thinking about fish-death, Shin-death and the connections the kids might be making, the lessons they could be learning about life and death, and all of the obvious associations.  Many parents say pets are a good way to introduce children to the concept of death.  Less traumatizing than say, the death of a mother.  All I can say is, I'm glad I won't be around to see me belly-up.

I know Death is an important lesson in life. But when it comes to pets, I guess I've failed the course.  But as Tony said, I'm glad the kids are passing. 

Sunday, May 4, 2008

Dr. Me

I had my last dose of chemo on Monday, five days ago. I should be feeling the side effects by now but I'm not. Not only can I hold my head up without any trouble, I've just been out to dinner with some girlfriends and chatted away the night with no coughing or breathing problems. I did feel a bit loopy and tired the past few days, but nothing close to the wall of fatigue I hit after the last two rounds of chemo.

I've just given myself a physical exam, feeling for the tumors that were poking out of my skin around my neck and chest. The bump on my sternum is almost gone, or at least I can no longer feel it with my fingers. Same for the one on my left collarbone. The one on my upper chest is still there, but I'd say it's only half the size now. And the red splotch in the center has flattened out and the color is fading.

I've reduced my codeine to half the dose in the past several days and my breathing has been just fine. I've been feeling no pain at all. I still have a few coughing fits from time to time, but only when I over-exert my lungs.

My conclusion is that this latest chemo combo is working. I think I should have an echocardiogram in two weeks' time, as well as another liver ultrasound and chest X-ray. If my heart is still strong and the liver and lungs show the improvements my symptoms indicate, I should continue on this current chemo regimen of Liposomal Adriamycin + Herceptin via IV drip every three weeks, plus Tykerb orally daily.

Should I be charging myself for this consultation? I'm getting good at this.

Saturday, May 3, 2008

The Cancer Card

There are plenty of books and advice columns out there about the proper etiquette for just about everything. But I've yet to see anything in writing about the socially acceptable uses of the Cancer Card.

Here are a few situations I've come across that might beg questions about the use of the CC:

1) I was in a restaurant and wanted to replace the side dish that came with my main course to something else because I was on a special diet during my cancer treatment. The waiter and chef refused to make the change for me.  My chemo-bald head didn't tip them off.  I had to pull out the Cancer Card to get the side dish I wanted to suit my diet, and even that was only after I called the restaurant manager over to explain my situation.

2) I had airline tickets booked for New York in June. I can't travel now because of my treatment. The airline doesn't allow refunds or exchanges. Out came the Cancer Card, but I still had to provide a letter from my oncologist verifying that I did indeed have cancer and might be too sick or too dead to use those tickets.

3) After I finished six weeks of radiation, some friends took me out for dinner to celebrate and brought along a bottle of champagne so I could take a symbolic sip. My friends asked the restaurant to waive the corkage because the fee was too outrageous to make it worthwhile to have the champagne at all. After my friends explained the reason for our celebration that night, the restaurant was generous enough to take a few dollars off the corkage but didn't think somebody conquering cancer warranted waiving the corkage entirely.

I'm not somebody who likes to take advantage of the universal sympathy people have for cancer patients. I don't wave the Cancer Card around expecting special favors everywhere I go. In fact, I'm reluctant to use it because it seems like a weak excuse most of the time.

But I wonder if I should be using it more? How about the following situations?

- Josie finally got a place in a very exclusive school next term after two years on the waiting list. If I die this year, we don't want her to have too many big changes in her life - dead mother plus new school with unfamiliar surroundings - so we'd like her to stay at her current school for one more term. That means we'd have to defer her enrollment in the new school and she'd go back to the bottom of the waiting list. Do we ask the school to make an exception for Josie and allow us to defer her enrollment for one more term IF I die, and if I'm still alive come September, Josie can still have her place? What's the appropriate way to handle this sticky situation? What would Miss Manners say?

- I've had to struggle at times to walk from our parked car to building entrances due to breathlessness. Should I have a handicapped parking sticker so we can park closer to the entrance and I don't have to walk so far? I'm not in a wheelchair, so I shouldn't qualify for a handicapped sticker. In fact, I'm indignant that people are even suggesting I have a handicapped parking sticker. But hey... getting the best parking spot every single time instead of driving around for half an hour looking for parking? Hmm... tempting!

What do you all think? Whip out the Card or pay cash like everyone else?

I'd love to hear any funny stories you might have about times when you used the Cancer Card or were tempted to use it.

Thursday, May 1, 2008

Losing... And Finding Heart

I've learned this Blog has gathered a bigger audience than I'd intended. When I write, I'm talking to my friends and family. It seems there are others out there who have found their way to this Blog via search engines or just by accident, and I think it's great if anything I have to say to my own friends and family is of any interest to others.

But today, I'm writing specifically to my Dragon Boat teammates, their families, and their friends.

I just saw you all at the funeral this morning and I realized how lucky we all are to have known our friend. I didn't know her as well as some of you. I know she made me smile, feel welcome, feel warm. I went to the funeral to say good-bye to her and to thank her for giving me her smile. I wanted to meet her son, who said he wanted his mother to be proud of him. I'd like my children to think of me that way some day.

I've also been thinking about how lucky I am to know you, your husbands, our coaches, and everyone else who's been supporting this Dragon Boat team.

Adversity sometimes leads to odd relationships. On the surface, I have very little in common with you. Even as we trained together, I thought the only thing we had in common was the boat, not even our reasons for being on the team.

Today, I looked at you all and thought about the friend we've lost. And I was so proud. I was so proud of her and the loving people she had around her today. I was so proud of all of you and your strength, smiles, and tears. All of it.

Today's was the second Paddle Salute we've had for a teammate in the past year. We might see more Paddle Salutes in the years to come. I worry about what this does to you. We want to be together and support each other in our fight against cancer, but we're putting ourselves at risk of losing people we care about this way. Why invest the time and heart in people who may not be around for much longer? Am I making you sad because you think the next Paddle Salute will be for me?

And this is why I'm so proud to know you all. You're not afraid to invest your hearts, no matter what the risk. We lost a friend and her family lost a mother, wife, sister. But I feel like I've gained a friend, many friends. I knew her very briefly, but she left something in me that wasn't there before. How is that losing?