Monday, January 28, 2008

Dandelion Break

One of my earliest memories is when I was growing up in Korea. I must have been about seven years old. There was a clearing in the woods across from our house and in that clearing was a stone bench. I remember lying on that stone bench one hot day, my cheek against the cool stone. The sky was blocked by the tree branches above me, but some of the sun rays managed to peek through between the leaves.

For some reason, I have a very clear memory of that scene and of what I was thinking. I was thinking that I knew what life was all about. I felt I understood more than other people and I knew that this was happiness and calm and that this was very important. I felt very peaceful. Now, I wonder what that little kid could possibly have understood about life and happiness, and what could have brought such existential tranquility to such a young child.

For my page in my high school yearbook, I used a cartoon of a penguin who turns on the T.V. and hears nothing but bad news about crime and disasters, then walks outside to sit in the grass among the dandelions. I don't know what I could have found to be so heart-crushing at the age of seventeen to think I needed a break from life, but apparently, I felt overwhelmed by the negative noise around me.

When I was a senior in college, twenty-one years old, I wanted to drop out two weeks before graduation. I felt no connection with any of my classmates who were excited about graduation, planning parties and chattering on about their photos for the official college yearbook. They seemed so silly to me. I felt like I had spent so much time growing up and learning, and that I was finally going to graduate from university and go out into the world. Only there was nothing for me to go to. I had a job lined up as a teacher, but I didn't think of that as a meaningful endeavor, just something I had to do because I was supposed to go out and get a job.

I saw my classmates going on to business school, law school, Wall Street, and it all seemed so meaningless to me. This is what we worked so hard for? This was IT?! I wanted to drop out of school and out of life. If I ever came close to ending my life, it was this moment. Luckily, I happened to walk by a travel agency and saw a poster of an empty beach -- white sand, clear blue water, bright blue sky, and a solitary palm tree. I walked in, bought a ticket, and went off to Caracas for a week. That did the trick and when I returned to school, I got back on the treadmill and did what I was supposed to do without kicking up a fuss about the meaning of life.

I think it's time for another Dandelion Break. Tomorrow, I'm going to a little island off the coast of Thailand to be by myself. I hope to spend the week looking out at the ocean and sky, writing letters, not speaking a word, having no contact with people.

I'm not going to find God, the meaning of life, or even to "find myself". Besides, if I've been looking for God, the meaning of life, or myself all along and haven't found them by now, I think it's a clear sign that either I've already found them or that I don't, in fact, need to find them.

I think we could all use a Dandelion Break once in a while.

Friday, January 25, 2008

Clinical Trial Inquiry

On Tuesday, I met with West Clinic, an American cancer treatment and research center with an office here in Singapore. They contacted me about participating in a clinical trial. It turns out that I'm not eligible for the trial, but I got a chance to ask a few questions.

The trial is for the drug Avastin, which is used for lung and colon cancer. Genentech, the company that makes the drug, recently tried to get it on the market for breast cancer as well. But in December last year, the U.S. Food and Drug Administration (FDA), rejected the use of Avastin for breast cancer.

The committee said Avastin slowed down the progression of cancer, but it did not improve overall survival rates. And patients taking the drug suffered more toxic side effects than those who did not. Worst of all, five of the 363 patients in the trial died from the drug itself.

So why is this drug that's been rejected by the FDA in the U.S. being tested again here in Singapore? And are the patients who volunteer for this drug trial going to be told that the drug has killed five patients and that the FDA has rejected it?

I asked the clinical research coordinator these questions and she said the side effects warnings are on the drug label. But she conceded that the drug label doesn't say the FDA has rejected the drug or that five patients died during the clinical trial in the U.S. She said volunteers would be told, but I'm not convinced that they will. I think I'll have to talk to my oncologist about this and see if she can find out for sure whether the patient volunteers are provide with all this information.

The volunteers for this trial are going to get two years of this cancer drug for free. These volunteers will be Stage IV breast cancer patients. This means the trial will probably attract women who are desperate for a chance at life and who have little money to spend on their treatment. And, most likely, not terribly well educated. This type of study seems to prey on uneducated, poor, desperate people.

I have no problem with doctors and researchers taking risks with patients' lives. This is unavoidable in cancer research, where so much is untested. But I absolutely insist that patients are given all the information they need to make intelligent decisions about their participation.

Tuesday, January 22, 2008

Fighting Cancer

What does that mean, "fighting cancer"? I've said in past Blogs that I'd fight until the end. But what exactly does that mean? Different things to different people, I suppose.

I'm fight cancer by learning as much as I can about the disease and my treatment so that I can make intelligent, informed choices that will give me the best chance of survival with everything conventional medicine has to offer.

I'm fighting cancer by strengthening my body and immune system with a strict diet, supplements, and exercise to make it harder for the cancer cells to live and multiply in my body, and to protect my healthy cells and help them recover from the damage from chemotherapy and radiation.

I'm fighting cancer with hope. After 9/11, I heard New Yorkers say they're not going to leave the city or live in fear because then, the terrorists would win. I won't personify cancer by attributing motive and intent to it, but like the terrorists, cancer can't win if it doesn't kill hope. Sure, it can destroy my body eventually, but I'm more than the sum of my body parts. As long as I have hope, I'm fighting cancer by refusing to let it destroy the life I still have.

I'm fighting cancer every time I get bad news and instead of despairing, I can pluck up the strength to console my family and friends and make them feel okay.

I'm fighting cancer every day that I appreciate the life I have and enjoy everything and everyone around me, no matter how small or big.

My sister gave me a plaque with a list of what cancer CAN'T do. It can't shatter hope or destroy friendships, or kill love, etc. The cynical side of me thinks, "Actually, it CAN shatter hope; I've seen that happen to some people. And it CAN destroy friendships; I've seen that, too." But actually, that's not so. I think Eleanor Roosevelt said, "No one can make you feel dumb without your permission." I think cancer can't shatter hope or destroy love without my permission. All it can do is destroy my body. But the hope, faith, and love I have can live on after I'm gone.

I hope my obituary doesn't say, "She lost her courageous battle with cancer." Too cliche and formulaic. Besides, if I died a snivelling basketcase, would they write, "Cancer whooped her butt"? I hope my obit doesn't say anything about battles or fighting, actually. I hope it just says that I died of cancer, but that I didn't let it get in the way of living, and that I had a great life and many people will remember what a lucky and happy person I was.

I'm curious... to those of you reading this Blog who are also "fighting cancer", what exactly does that mean to YOU? I'd love to know.

Chemo! Finally!

After three weeks of delays because of my chest infection, I was finally able to start a new chemo combination today: Taxol + Tykerb.

I had Taxol before, but with two other drugs. This Taxol/Tykerb combination is new, so there are no studies that compare this with the usual Taxol/Xeloda combination. In fact, the FDA (U.S. Federal Drug Adminstration) approval for Tykerb was only in combination with Xeloda. It hasn't been tested with other drugs, inluding the Taxol I'm getting. So again, I'm a bit of a guinea pig with this one.

Tomorrow, I'm going to talk to a research clinic here about a clinical trial. All I know about it so far is that it's only for Stage IV metastatic breast cancer patients. In other words, patients on their last legs who don't mind having untested drugs because they don't have much of a chance otherwise. But I figure, if I die, at least I can contribute something toward research that will help other women after me. I just have to make sure I'm helpful, rather than just a sacrifice.

Friday, January 18, 2008

Still No Chemo

I had another chest X-ray today, the third in two weeks. The infection is still in my lungs. It's a bit better than before, but still not good enough to start on the new chemo. I suppose I should be worried because that makes two weeks that I've been off chemo. Given that my tumors tend to grow as soon as I stop chemo, this long break is only giving the cancer cells a chance to grow and spread further. But for some reason, I'm not that worried. Maybe it's because I've gotten so used to bad news, it just doesn't faze me.

My doctor told me she talked to her colleagues and they all agreed that I should go on Taxol or Taxotere. I've had Taxol already and we had a good response, so we're going to try that one again. Before, I had Carboplatin + Taxol + Herceptin. Now I'm going to have Taxol + Tykerb. We're saving the Taxotere in the arsenal for when things get worse. It's more toxic and has more side effects than Taxol.

I've been reading a bit about these drugs and I think there might be another drug we could try that studies have shown to be better than Taxol. I'll bring this up with my doctor before we start next week. It feels a bit weird that I'm suggesting treatment choices to my doctor, but cancer is one disease that really calls for patient involvement. I feel like it's up to me to save my life.

Tuesday, January 15, 2008

A Life to Be Proud Of

Here’s a game I play to take stock of myself and help guide the way I live day to day. I think about what people will say about me after I die. Then I think about what I'd WANT people to say about me.

I’d like to know that I’ve had a positive impact on the lives of people I’ve known, in small ways or big. I’d like to hear things that would make me proud.

Here are some things I’d like people to say about me:

-- Shin was a fighter. She never gave up.
-- Shin was a great mother. Josie and Toby couldn’t have had a better mother.
-- Shin loved Tony for reasons even he didn’t understand.
-- Shin could always make me laugh.
-- Shin delighted in the smallest little things and appreciated so many things most of us take for granted.
-- Because of Shin, I know a lot about cancer risks and how to lessen them in my life.
-- I stopped smoking/started exercising regularly/eating healthier food because of Shin.
-- Sometimes I want to give up and just let the cancer get me. But then I think of Shin and I decide to fight another day.
-- Shin was so patient and tolerant. (Okay, no one’s going to say this about me now, but I’m working on it!)
-- Shin showed me that death doesn’t have to be a terrifying thing. Because of her, I don’t fear death; instead, I embrace life with more gusto.
-- Shin taught me how to use lie/lay and I/me correctly. Whenever I can’t decide whether to use “I” or “me”, I think of her.
-- From Shin, I learned to see myself as a work in progress, and each day, I try to act in a way that makes me a better person today than the person I was yesterday.
-- Shin forgave herself and others for their weaknesses and mistakes.

And on and on. I have so many more things to put on this list because there’s so much I’m still working on.

You should try making such a list for yourself. And every time you have to make a choice in your daily life, whether it be yelling at your kids versus speaking to them calmly, or taking the high-paid job versus staying home to raise your children, think about this list of things you'd like people to say about you.

You don't have to face death to live a life that you can be proud of.

Sunday, January 13, 2008

Reality and Hope

Being realistic and hopeful might seem like a paradox when you have cancer, but that’s how I’d describe myself. I need to explain this because I think some people confuse facing reality with giving up.

There’s a strong possibility that I will die sometime soon. The recurrence of my cancer so soon after treatment and its spread to the lungs, bones, and liver in such a short time period suggest that I may not last through this year. That’s hard for my family and friends to accept. Think how much harder it is for ME to accept. But I DO accept it – not as my fate, but as a possibility.

There’s also a possibility that I’ll beat the odds and keep my body going for many more years to come. It’s not probable, but I believe it’s possible.

But that doesn’t mean I’m going to live today as if I had a lifetime left. With the odds stacked against me, it would be irresponsible of me not to prepare myself, my family and friends.

People often say you should live each day as if it were your last. Now think. If you knew you had exactly ONE day left to live, how would you spend that day? Enjoying a picnic by the river with your dearest loved ones? I doubt it. You’d spend that day in a wild panic about all you wanted to do and say to the people you care about. You’d probably be so panicked and terrified, you wouldn’t be able to do anything at all. Most people would probably cry their way through that last day.

I don’t want to get to that point. I want to be ready, mentally and otherwise, for the day my doctors tell me there’s nothing more they can do for me. And even then, it won’t be over. I’ll keep fighting with whatever I have left. I’ve heard too many miracle stories to think it can’t happen for me.

But getting ready for death doesn’t mean I’m getting ready to die. We don’t expect to get into a car crash every time we get in the car with our kids, but we put them in car seats just the same.

So I’d like my family and friends to know that I’m still in this fight and I will be until the very end. It ain’t over ‘til it’s over.

Chest Infection

I had another X-ray today to see if the last two days of antibiotics have had any impact on my chest infection. Looking at today's X-ray alongside the one from two days ago, I couldn't see much difference. But my doctor said there's slight improvement so I should be feeling better soon.

Tomorrow, I start Tykerb (lapatinib), a new breast cancer drug that just came on the market last year. It will replace the Herceptin I've been getting, but unlike Herceptin, Tykerb penetrates the brain. This is important to me because 1) I like my brain and would like to keep those pesky cancer cells out of there, and 2) Tykerb is taken orally rather than by IV drip. Unfortunately, Tykerb is more expensive.

My doctor is meeting with a group of oncologists next Wednesday to discuss my case and decide what chemo drug I should go on next. I'll see her on Thursday and we'll start a new chemo to go with the Tykerb. The one she told me she'd recommend would make my hair fall out. So I'll be bald again. I don't really mind losing my hair though. It seems such a silly thing to worry about when one is dying.

My doctor and I talked about all the different options that are still available to me in terms of drug combinations, so I have faith that we can drag out this dying thing over a very long period of time.

Friday, January 11, 2008

Bad News, Worse News

I went in for my weekly chemo today but instead of chemo, I got a CT scan (CAT scan) and chest X-ray.

The bad news is, I have a chest infection. This cough I've had for the past four days is due to the flurry of white stuff that showed up on my chest X-ray. The radiologist and oncologist said we have to get rid of this infection ASAP, so instead of chemo, I was put on an IV of antibiotics.

The worse news is... my cancer has spread to the liver. There are four spots spread out across the liver.

Well... it could be even worse. It could be FIVE spots instead of four.

So it seems Navelbine, the chemo I'm on now, isn't working so well anymore and we need to try another drug. My doctor is recommending Tykerb, which was just made available a few months ago, plus a Taxane (Taxol or Taxotere). For some reason, she thinks the usual recommendation of Tykerb + Xeloda isn't as good for me. I can't start on this until my chest infection is gone, so I'll have until next week to do some research on these new drugs.

I knew the cancer would spread to the liver at some point, so I wasn't shocked or too upset by the news. Still, I didn't think it would happen so soon. I've known of a few women whose cancer had spread to the liver and they died within months. Then again, my oncologist's husband had liver cancer and lived another six years. I'll try to keep thinking of him and not the ones who didn't make it.

Thursday, January 10, 2008

Sticking Around

Before my cancer diagnosis, I knew only one person with cancer. Since then, I’ve met dozens of cancer patients and survivors and even more people who have loved ones with cancer. And sadly, many people who’ve lost loved ones to cancer.

The problem with having friends with cancer is that there’s a pretty high likelihood that they’ll die on you. I think this is why some people distance themselves from cancer patients – they want to avoid the pain when that friend dies.

I know that I’m going to leave some people sad when I die. I worry especially about fellow cancer survivors who are counting on me to live so that they can use me as an example of how a fighting spirit, healthy lifestyle, and positive attitude can keep cancer at bay. I want these people to know that my dropping dead tomorrow doesn’t make my efforts at surviving meaningless.

I’ve also been re-connecting with a few friends from my distant past and I’ve wondered whether it’s fair for me to re-introduce myself into their lives if I’m just going to die.

I’ve gone to two funerals in the past year for friends who died of cancer -- the only two I’ve ever been to in my life. And each time, I was acutely aware of the fact that this would be me one day.

Unfortunately, it’s quite likely that I’ll be going to more funerals this year. Going to so many funerals, especially for friends who have died so young of this dreaded disease, can be tough going on the heart. I worry about other cancer survivors at these funerals and the fears they must be facing. I worry about other cancer survivors at MY funeral and what they’ll be thinking about their own futures.

But somehow, I have faith that we’ll all get through whatever comes our way. As Woody Allen said, “the heart is a resilient little muscle”. We’ll be heart-broken, bewildered, angry, crushed. But we’ll go on with our lives, love the people around us, and do our best to make ours and others’ lives better. I think that’s the best tribute we can pay to the ones we’ve lost.

To my family and friends who are standing by me through this, knowing the risk of losing me, I’d like to say that I’m as impressed with you as you are with me. It takes a lot to stick around. I don’t have a choice. You do.

Tuesday, January 8, 2008

Life-saving Knowledge

Since my diagnosis, a number of friends have told me they’ve gone for mammograms, breast ultrasounds, and other screening tests because I’ve raised their awareness of breast cancer risk. A few have found lumps in their breasts and are being closely monitored.

It does my heart good to hear that my friends are more aware and taking better care of themselves than I did. It means the world to me that my having cancer is doing some good to other people I know.

If I had known then what I know now about breast cancer, I would have caught my cancer much earlier and I'd have a much better chance of survival. What a shame I knew so little back then. And what a shame that a person's life or death could come down to a little bit of knowledge.

Monday, January 7, 2008

New Round of Chemo

I haven't been able to post new entries on my Blog since December 14 due to problems with the site so I've forgotten much of what I wanted to say for the past several weeks. Here's a quick recap of what's been going on:

We went back home to the U.S. to see our families for Christmas on December 17 and just got back to Singapore on January 3. Hours after our return, I went in for my weekly chemo.

I went back on chemo just before we left for our holiday because of the chest pains I'd been having. We (doctor and I) guessed that the pains were caused by tumors that were growing back, despite the fact that I had just finished a round of chemo at the end of November. The conclusion was that this is a very aggressive cancer and the tumors start growing back as soon as I go off chemo. So now I have to stay on chemo continuously, without a break. My schedule is chemo every week for three weeks, then one week off so that my white blood cells can recover, then three more weeks, one week of recovery, and so on.

While we were in the U.S., I had two doses of chemo orally. Very convenient to take pills instead of being hooked up to an IV drip. So why don't I do pills instead of IV every week? ONE, because I need to have Herceptin by IV anyway (I got a three week's dose just before leaving for the U.S., but normally need to have it once a week), and TWO, because the oral Navelbine costs twice as much. So drip it is.

While in the U.S., I saw an oncologist to get yet another opinion about my cancer. She agreed with the course of treatment I was getting. She also agreed that this was a particularly aggressive cancer, but unlike my own oncologist here in Singapore, this U.S. doctor said she'd seen other cases of cancer coming back so quickly and tumors growing back immediately after chemo ended. So that's some consolation. At least there are precedents and I'm not some freak of nature that doctors don't know how to handle.

Just before leaving for our holiday, I went to see my surgeon -- the one who did the second operation when I had the mysterious bleeding in the chest back in May 2006. He told me "this is now a very grave situation". Why couldn't he have said "serious" instead of "grave"? I wish I'd asked him how long he thought I had left. I didn't want to know the answer to that question before, but now that it seems the cancer's getting worse, I wish I had some idea of just how quickly I should start preparing for THE END. I didn't ask my oncologist how long she thought I had either, but she said she wouldn't tell me anyway because "it's in God's hands". I wonder if that's doctor-speak for "this is a hopeless case"? I hope not. See there? I have hope. I'm not a hopeless case.