Wednesday, August 30, 2006

Chest Pains

Last night, I felt sharp pains deep in my chest, on the right side. So deep, it almost felt like it was toward my back. When I coughed or tried to pop my ears by holding my nose and breathing out, the pain was very strong. It also hurt a bit when I strained my right chest area -- by bending or lifting my arm a certain way. I woke up with the same pain this morning, so I called my oncologist’s office and the nurse told me to come in. By the time I got to the doctor’s office, the pain had stopped. Figures.

The doc said it wasn’t my heart, because the pain was on my right side, and the lungs sounded fine as well. She said the pain was probably due to nerve damage from the radiation.

I’m relieved that it’s nothing to worry about, but I also know that something like this could happen again and it could be serious. I’m scheduled to have a chest X-ray and liver scan next week when I go for my Herceptin treatment. That’ll be the first big post-treatment test to see if cancer’s come back. I can’t wait to have that test so I can be reassured that cancer cells aren’t quietly spreading through my body. But these tests aren’t foolproof, I know, so I’ll never have complete reassurance. Just one teeny tiny microscopic cancer cell left behind is all it takes to get the cancer colony started again. And then I’m back where I started, only with a body that’s already been damaged by chemo and radiation.

I just read about a woman undergoing chemo who peed on the grass in her backyard. The next day, she noticed a bald patch in the grass where she’d peed. The chemo drugs inside her body were so toxic that her pee killed the grass on contact. The grass didn’t come back on that patch for an entire year. Yikes. And to think this is the best weapon we have to fight cancer. This and zapping with radioactive rays that cause cancer themselves. Not a very fair fight.

Sunday, August 27, 2006

Dragon Boats and Ticking Clocks

My second day of training with the Dragon Ladies -- I think that’s what we should call ourselves. There were two expat women today -- older ladies in their 60s, I think. I’m actually surprised at how many younger women there are in the group. I’d say half the women are in their 30s or 40s. It seems breast cancer patients are getting younger and younger. Maybe because people are being more vigilant about their breast health and are being diagnosed much earlier. That would also explain why the survival rate is getting higher.

We spent quite a lot of time getting the boats into the water and didn’t start rowing until 8:30. I got there at 7:30 a.m. I was a bit antsy to get started as soon as I got there, but we had to wait for everyone to arrive, catch up on chit-chat, eat bananas, get the boats, and do warm-up exercises.

I find myself feeling impatient and hurried quite often. Yesterday, I had a list of errands to run and when I got behind schedule, I became quite frustrated and annoyed. I even found myself walking at a super-fast pace, like a wind-up robot on high speed. Cancer survivors say you should slow down, take it easy, and appreciate life instead of hurrying through it. But how can I slow down if I have limited time to do all the things I want to do?

I had a very bad experience with a Reiki master earlier this year at the beginning stages of my treatment. The Reiki center would tell me to come for a training session at 6:00, then I’d be standing around waiting for an hour. Meanwhile, I was losing time away from my kids. When I pressed them to tell me when we were going to start, the Reiki lady told me to be patient, we could take our time. I was so frustrated by then, I snapped, “I don’t have time to waste! I’m dying of cancer!” I never went back after that. I realized it was stressing me out, rather than relaxing me as Reiki was supposed to do. Maybe they were bad Reiki practitioners -- I’ve heard some of these people are phonies looking to make a quick buck. Or maybe I just wasn’t ready at that time.

But I still struggle with the dichotomy -- slow down and appreciate what time I have left, or hurry up and do everything I want before the clock runs out?

Friday, August 25, 2006

Could Cancer Make Me a Better Person?

I think sometimes I should REMIND myself that I could die of cancer any day. It would change my behavior for the better. I lost my temper with Josie today. I just couldn’t get her to do anything I asked. She wouldn’t get out of her pyjamas, get dressed, eat her breakfast, get ready for school. This has been going on for weeks now. I got so impatient and frustrated with her, I yelled at her and put her in her room.

Later, it occurred to me that if I knew I only had days or weeks of life left, I wouldn’t care that she didn’t finish her breakfast or was late for school. In fact, I’d probably keep her home from school so I could spend all my time with her. So should I be doing that, I wonder? Probably not. I’ll be around long enough that she can still have a normal life, but what if we get to the point when I know I won’t last much longer? Do I then disrupt her life so that I can spend more time with her?

Anyway, if I remind myself that I have limited time with her, I’d have more patience and appreciate even the frustrating things about her. That applies to many other things in my daily life. I get angry about petty things that a dying person shouldn’t give a damn about -- bad drivers, shoddy goods, rude and selfish people, unreasonable rules.

Maybe the problem is that I don’t have any symptoms. Because I don’t feel or look sick, I forget that I could die of cancer very soon. So I forget to appreciate every moment, stop to smell the roses, and all the other cliched things that people who have come close to death say they’ve learned -- a renewed appreciation for life. I don’t have it. I think I appreciated life plenty before I got cancer. But maybe it would help me to think that I could die very soon -- but in a positive way, to make me more mellow, patient, and easy-going. So that I don’t care so much about petty little daily life things.

Thursday, August 24, 2006

Dragon Boat Race Training

I joined a dragon boat racing team today. The team is made up of breast cancer survivors, organized by the Breast Cancer Foundation. There were about 30 women, ages 35 to 65. They’re training for the World Championship race for breast cancer survivors coming up in September. Yep. An entire world championship dragon boat race, just for breast cancer survivors. The team’s been training since last October, and you have to be out of treatment for at least six months before joining the team. I thought I might lie and not tell them I was still undergoing treatment, but my near-bald head gave me away. I told them my doctor said it was okay. A tiny little fib. They let me train with them today. I hope they let me race on racing day next month.

All of the team members were Singaporean. I was a bit surprised. I was expecting mostly expats. I didn’t think Singaporean women were that open about their cancer. I underestimated them, I must say. These women seemed like feisty fighters to me. Just the type to join a dragon boat team. Just my type of people.

I feel the need to conquer some hard, physical challenge. I’ve always admired endurance athletes like marathon runners because of the mental discipline required to push their bodies beyond their limits. I think golfers, basketball players, and tennis players, for example, might have talent and discipline. But they don’t overcome their bodies’ limitations with sheer mental power and determination. They don’t go on for hours and hours. That’s what I want to do. I want to conquer this body that has let me down so badly with whatever I can muster of my spirit and mind.

So for now, dragon boat racing. Maybe next year, I can try a half-marathon.

Wednesday, August 16, 2006

Wisdom of the Crowds

This is the title of a book which proposes that a large group of people have a collective wisdom that beats individual professionals or experts in any given field. I found this to be the case in my search for the best cancer treatment I can find here in Singapore. I’ve trolled the Internet for information. I’ve amassed a library of books on cancer, treatment, diet, exercise, and alternative therapies.

I’ve met with 16 doctors in Singapore and the U.S. I’ve consulted via e-mail with several more. I’ve talked to numerous fellow cancer patients and survivors. And after taking in all this information, I’ve come up with my own conclusions. This is the biggest research project I’ve ever taken on. And the reward for my research work won’t be a grade in school or a promotion at work. If I do a good job, it will mean I get to live a little longer.

I’ve learned from my experience with the mysterious bleeding in my chest a few months ago that I can’t just leave my treatment up to the doctors. None of my doctors were sure of what needed to be done, so I finally had to take control and find a solution -- in this case, a fourth doctor to weigh in his opinion. Then I made my decision based on my doctors’ various opinions, plus the information I found on the Internet.

I think it can be scary for a patient to take this much responsibility for her own treatment. If I leave every decision to the doctors, and something goes wrong, I can just blame them. If I make the decisions and something goes wrong, I have no one to blame but myself. But since it’s my life and I have only one of these, the stakes are quite high for me. For doctors, it’s somebody else’s life and they have lots of these cases to handle, so the investment is not as great.

It’s the simple reality that doctors have the tools but not the vested interest, while patients have a huge investment, without the tools. But with the Internet and the sheer volumes of information available out there, patients can have some of the tools, at least enough to question doctors and work with them in finding the best treatment. I’ll bet the Internet has done wonders to improve patient care, at least in the U.S. Evidently, not in Singapore yet.

Now I find myself in the curious position of being somebody else’s advisor. I went for my routine Herceptin treatment today and ran into a fellow patient who has been referring to me as “Dr. Shin”. She’s been asking my advice about the swelling in her arm and her discomfort with the catheter for her chemo treatments. I was surprised that the advice I had to give her hadn’t been provided by her own doctors -- e.g. arm massage and exercises for swelling, the chemo port option instead of the catheter.

So now I find myself worrying that other patients aren’t getting the best care they can, simply because they don’t have all the information they need to make decisions about their treatment. I need to do something about this.

Friday, August 4, 2006

Live for What?

When I was first diagnosed, I thought about my cancer all the time. These days I find I don’t have time to think about it. Of course, there are physical reminders of my cancer, and I talk about it when it comes up in conversation, but I just think about it as a fact, not an emotion. “We’re going on a holiday in September to celebrate the end of my cancer treatment.” “We couldn’t buy the condo we wanted because I was diagnosed with cancer during our negotiations.” Just everyday conversation with cancer as an everyday fact of life.

I’m too busy to feel the cancer now. Today, I went to yoga class, sold some furniture to raise money for the Children’s Cancer Foundation, met a friend for lunch, went to visit a newly diagnosed cancer patient, gave Josie a shower and saw her to bed, then went to visit a maid shelter to deliver some cakes and talk to them about how I can help. What a busy day. Who has time for cancer with so much going on?

And tomorrow’s the last day of “Mommy School”, so I’ll have six kids graduating from home school, which I’ve been running at our house twice a week during the summer. And I’m going to start Mandarin lessons soon, and if my doctor says it’s okay, train for a half-marathon. I also plan to set up a cancer resource Web site. I have so many things I want to do, I’m trying to fit as much into my days as possible because I don’t know how many days I have left.

Keeping active and having goals, plans, and dreams is going to help me through my cancer. Cancer makes you feel desperately that you want to live. But live for what?

Before my diagnosis, I used to think that if I ever had a terminal illness, I’d go climb Mt. Everest. If I died trying, then okay, I was going to die anyway and at least I was doing something interesting when I died. And if I didn’t die and actually made it to the top, then hey, what an achievement!

But now that my mortality has been thrown in my face, I don’t aspire to do anything as grand and self-serving as climbing a mountain. I just want to do little things that I think will make my world better. I see a lot of things that need fixing. I think healthcare professionals' communication skills and patient support in hospitals in Singapore are virtually nonexistent, particularly for cancer patients. I want to change that. Maids here can be abused and the government does little for them. I want to change that. I’m not going to set up any foundations or change any laws. I’ll just help one person at a time and fix as much as I can while I’m around. And maybe someday my kids will be proud of me for trying to fix things.

Thursday, August 3, 2006

Stalkers and Death Row

People often say that no one knows when we’re going to die; we could be hit by a bus tomorrow. I think I’ve mentioned before that this analogy doesn’t work because once you’ve had cancer, it’s always out there, its sole purpose is to kill you, and you have to spend the rest of your life dodging it.

Someone said it’s like a stalker. That’s a more apt analogy. Cancer is your own personal, dedicated, invisible stalker. You may not see it for a very long time, but you will always live with the fear that one day, when you think it might have gone away for good, it will jump out at you and you’re back to the drawing board. Back to the chemo, surgery, radiation -- the armory of weapons to beat it back, but never ever completely destroy it.

I’ve heard this mantra over and over again: “Cancer is not a death sentence.” I believe that, especially when it’s early stage breast cancer, for which the 5-year survival rate is 80-100%. But I have Stage IV breast cancer, and statistically, I have a 20% chance of being alive in five years. I know I’ll be in that 20%.

But going back to the death sentence analogy... I wonder what chance a death row inmate in the U.S. has of living to a natural death while waiting for his sentence to be carried out? I’ll wager it’s much greater than 20%. So statistically speaking, I’d have a greater chance of survival as a death row inmate in the U.S. than I do as a Stage IV breast cancer patient.

In a way, cancer IS a death sentence, but one with many avenues of appeal. A death row inmate is marked for death but he can put hope in his lawyers, the legal system, the state’s mercy, to escape death. There is always the fear that all appeals will end at some point, but that doesn’t stop him from appealing his sentence. I have faith in medicine, in doctors, and in my own strength and ability to kill my cancer, or at least keep it at bay for a long time. But the fact is, I’ve been marked for death and someday, I may run out of appeals. That doesn’t mean I stop trying.

Wednesday, August 2, 2006

Bald AND Tattooed!

My crazy, amazing sister, Jin, had her head shaved to show support for me and to donate her gorgeous long hair to make wigs for cancer patients. She also had my name in Korean tattooed on her head. What a thing for a sister to do! And she beat me to it! She had this done in Maryland, where she lives, a few days before I went under the razor in Singapore.

Tuesday, August 1, 2006

Parallel Universe

The world can be divided into cancer and non-cancer people. People who have never been touched by cancer live blissfully unaware of death. Those who have cancer or even those who are close to someone with cancer have to face a completely new world -- a world that looks the same as it did before but is really almost just a dream because it can all be taken away.

Some cancer people liken it to a parallel universe. A lot of everyday things remain the same A.D. (After Diagnosis) as they were B.C. (Before Cancer). I still pay bills, play with my kids, go grocery shopping. I still yell at dangerous drivers on the road, argue with my husband, lose my patience with the kids. All very much as they were B.C. So most of the time, I live in the B.C. universe with everyone else.

But several times a day, I’m reminded that I don’t belong in this universe anymore. I’m bald. I have scars on my chest where my breasts used to be. I swallow 35 pills a day. For breakfast, I drink vitamin concoctions. I have a port implanted under the skin on my chest, with a tube that runs into the main artery to my heart. But all of these things have almost become natural to me now. They don’t really scream, “You have cancer! You’re gonna die!” at me anymore. They just let me know I have a new diet and a new look. That is, until I stop to think about it.

The times I really feel I’m living in a different universe is when I think about the future. I was in a shopping mall recently and found some clothes on sale, so I tried on an armful of clothes. Then I put them all back. It suddenly seemed silly to buy news clothes. They might just go to waste.

Tony let the kids eat chocolate-covered ice cream today. I started to fret that my kids are going to grow up on junk food if I’m not around. These are the kinds of silly everyday things that scream to me that I have cancer. If I can’t even be around to make sure my kids eat nutritious food, how am I going to ensure that they grow up to be thoughtful, kind, loving, confident, strong, and independent adults? How will I make sure that they even remember me?

These are the kinds of thoughts that run through a cancer person’s head in the parallel universe we call Cancer World. Non-cancer people see an overly protective mother complaining about her kids having too much sugar in their diet. Cancer people see a mother who knows she might not be around much longer to watch her kids eat ice cream, tuck them in at night, watch them go out on their first date, get married and have kids of their own. And all this because of a little ice cream... This is something non-cancer people can’t understand.