Monday, December 29, 2008

Liver Update, Surgery Planned

The palliative care doctor who's taken over my case while my regular oncologist is away came to our house today. She came to examine me and talk about the liver ultrasound result.

She said the scan showed the largest tumor from the previous scan has grown from 3.8 to more than 4 cm, but she couldn't tell me anything about whether the number of lesions has increased or by how much. She also said the fluid in my lungs has increased. I'm not sure how they could tell that from a liver ultrasound, but there it is. These are just preliminary results so we might get more details later.

Meanwhile, the doctor suspects that although it's the liver causing most of my problems, I also have an inflamed gall bladder that may be exacerbating the pain and nausea. So I'm going to have the gall bladder removed.

But because I've lost so much weight lately, the surgeon is afraid I may not be strong enough to withstand the surgery, so they've now put me on a course of antibiotics to help the inflamed gall bladder settle so I can eat and put on some weight before I get the surgery. So I guess I'm like the Christmas turkey - they're fattening me up before they cut me open.

I'm just happy we finally have a course of action. There's nothing worse than sitting around in limbo, waiting to feel better without being able to do anything to actually make that happen. So that's the plan for now.

Sunday, December 28, 2008

A Simple Gift

I haven't posted anything for the past week because the pain and nausea have been so bad that I haven't been able to do much. We've spent the past five days playing around with different combinations and permutations of pain and nausea medication, but we just can't seem to get it right. I've started losing weight again because the mere thought of eating makes me queasy, and this is worrying me since I have to keep my body strong enough for chemo.

I finally decided a few days ago to get a liver ultrasound, even though my regular oncologist isn't back yet from her holiday break. I'll call in tomorrow to see what the results show. I had a quick peek at the monitor as the technician was scanning my liver and it looked like Swiss cheese to me. But I'll try to hold off on any conclusions, especially those involving food-related similes, until I see the actual report.

The long-term plan will be to find another chemo combination that will work if this one's not doing the job. The immediate plan is to find a way to stop this pain and nausea so I can have a quality of life worth preserving with the chemo in the first place.

It's easy enough to tell people to be strong and persist. Maybe on a short-term basis, physical pain can be overcome. But when the pain and discomfort are constant so that you can't think about anything else, they really take life away from you. I've given birth twice. I'd rather do that all over again than deal with this. Yes, even without the epidural.

The worst of it all is the effect on the family. I haven't been able to play with my kids or their cousins who are visiting from the U.S. I haven't been able to help Tony with things around the house to keep his family happy. On Christmas day, it was all I could do to sit up straight without falling over as the kids opened their gifts.

By the way, those of you who gave us gifts, could you please let me know what you gave? Normally, I'd write down who each gift came from so we can say thank-you. But I wasn't able to do that and now we have a houseful of very generous gifts and I have no idea whom to thank for them. Not only that, we still have a bagful of gifts that we have to hand out to the neighborhood kids that I haven't been able to organize. Poor Tony has enough to deal with these days. So if your kids haven't received their gifts from us yet, please come by and we can give them to you.

I'm sorry I don't have anything very cheerful or festive to say. How's this... Lucky for you, you have your health and your family to enjoy it with. Don't underestimate the value of something as simple as being pain-free. Relish that you can eat, that you can pick up and hug your kids, that you can make your spouse smile instead of look sad, that you can walk and talk without running out of breath. There are so many delicious things in life that you still have that I see I'm losing now (only temporarily, I hope!). Play that out-of-body game and be me for a few minutes. Then go back to being you. Aah. No pain... That must feel good. There's my gift to you this holiday season. Merry Christmas!

Friday, December 26, 2008

Rhetorical To Real

"How many times do I have to ask you? What did I just say? Did you hear me? What did you do that for? What were you thinking?"

These are rhetorical questions parents ask when their kids do something wrong. We never expect an answer; in fact, we don't even give them a chance to answer. I've realized this and decided I'm going to change that.

Toby's still too young, but with Josie, I can have a discussion launched from these questions and really give her a chance to respond.

A while ago, she was jumping on my bed so I asked her to stop. She kept doing it. I said, "Josie, I just asked you to stop jumping on the bed. Why did you keep doing it?" And then I made eye contact with her and waited for an answer. When she saw that I was actually asking for an answer and not just throwing those questions out to scold her, she really thought about it and explained herself to me.

She got a chance to reflect on and explain her behavior and I got a little look into her mind and reasoning process. Win-win situation. Not only that, she doesn't always ignore those types of rhetorical questions from me anymore; she actually stops sometimes to think about what I asked and tries to answer.

This is a pretty mature thinking process, this type of self-reflection. If we, as adults, asked ourselves similar questions about our own behavior and choices, we might be stumped. Why did I just have that drink when I know I've already had too many? Why did I do that? Why did I agree to go out with that guy when I know he's no good for me? What was I thinking? Why am I taking this job when I know it's going to make me miserable? How many times have I made this mistake before?

If we forced ourselves to stop, really reflect upon, and answer these questions, we might come up with some helpful answers, just as our kids can if we give them a chance to respond instead of throwing out empty, meaningless questions at them.

Wednesday, December 24, 2008

Meet Me In Heaven

One of my favorite songs is by Pearl Jam, with these lines:

"Oh where oh where could my baby be
The lord took her away from me
She's gone to heaven so I've got to be good
So I can see my baby when I leave this world."

Toby likes to sing this song - very cute coming from a three-year-old. What a hip pre-schooler!

It's a nice thought that you try to be a good person so you can go to heaven when you die and be with a loved one who was taken from you. Of course, the kids could grow up to think that maybe their mother isn't in heaven but elsewhere, in which case they could use that excuse to do wicked things so they can see me in "that other place" after they die...

To hear the song, click HERE.

Tuesday, December 23, 2008

Coal In My Stocking

For the past week or so, I've had more nausea and stomach pain than usual, but I thought they were just side-effects of the drugs I'm on or the cancer cells taking nibbles at me. I went to see the doctor today to get a post-chemo blood count (counts all good - yay!) and asked about my symptoms while I was there. I asked if the pain and nausea might be due to ulcers caused by the steroids I've been on since August - a long time to be on steroids. I suggested we do an endoscopy to find out.

She said that if an endoscopy showed I had ulcers, the treatment would be Nexium, Zantac, and Maxolon - drugs that I'd already been taking, which didn't work. There was a chance that it was a different kind of ulcer caused by the Helicobacter pylori bacterium, and if that were the case, the treatment would be two antibiotics and a "proton pump inhibitor", a type of drug that reduces gastric acid production in the stomach.

An endoscopy costs S$300-400 (US$200-275). I didn't want to spend that kind of money.

Then the doctor did a physical examination to locate exactly where the stomach pains were. Luckily, I'm a grown-up and can be a bit more precise than "I have a tummy ache." As she tapped away and asked for my responses, she started shaking her head. Her conclusion? It's not an ulcer at all. It's my liver. My biggest worry.

Liver failure, apparently, is the most painful way to die. If you die of lung failure, there's still a chance you can expire with grace and dignity, like in the movies. Deep breath, gentle closing of eyes, quotable sentimental words, then fade out to black. But with liver failure, there's groaning and moaning, agony and excruciating pain. So unladylike! Not to mention the trauma and stress on the family.

So here's our situation at the moment. My liver's not doing so well. I'll have my liver scanned with an ultrasound when my regular oncologist returns from her vacation.

Meanwhile, the only thing we can do is treat the symptoms. We've now upped the anti-nausea ante to Motilium, and if that's not enough, I have Kytril as a back-up, but these tiny pills are S$30 (US$21) per pill! Now that hurts! For pain, I've now moved on to morphine from the codeine-paracetamol combo I was on. Let's see if these drug changes make any difference. I used to be so adverse to taking pills for any reason. Now, they're my main source of food.

Today, I actually ingested more pills than food. No kidding. Food tally: about four noodles (not bowlfuls, but actual strands of noodles) with two small squares of cabbage in a clear broth, one bite of pizza crust, and two digestive biscuits. Pill tally: more than 20 pills for seizures, pain, nausea, breathing problems, hand-foot syndrome, protein support.

A friend of mine got laid off last week and I told him the timing really stank. Who would fire somebody just before Christmas? He said, "Well, it could be worse. I could have cancer." Now here I am with some lousy news. Well, it could be worse. I could lose my sense of humor and think my friend's comment wasn't funny. Now that would be truly tragic. But he made me laugh. Hey, I can still laugh.

Monday, December 22, 2008

A Tale of Two Tales

Tale Number One:

Tony came back from the supermarket yesterday after doing the food shopping, then fired up the barbecue and made lunch for the nine of us (visiting in-laws). He gave me a hamburger as I requested, but instead of expressing my gratitude, I told him it was silly to give me half a burger with a whole bun, plus I wanted onion, and when I got the slice of onion, it was a circle rather than a semi-circle so it wouldn't fit onto my burger, plus he'd cut the onion on our wooden cutting board, which I'd told him leaves an onion taste that will transfer to any fruit we cut on the board later on. So here he had gone through all this trouble to make me happy and instead of being thankful, all I could do was come up with reasons to criticize everything he did.

Tale Number Two:

Just after the incident described above, Josie was jumping on a side table in our living room and I saw that it could be quite dangerous, especially for her little cousin who's staying with us and copying everything Josie does. So I asked Tony if there was somewhere else he could put the table that was safer for the kids. He angrily grabbed the table, threw everything off it and shoved the table into a corner. I asked in a challenging, emotional voice, why he was acting so strangely and why he couldn't just listen to me and answer my question instead of being so rude and dismissive. I told him he was being unreasonable when all I wanted to do was solve a problem. All this in front of his entire family, including the kids. I persisted in asking him to respond with some explanation until he finally just walked out of the house.

Multiple choice question. Which of the following best describes the situation above?

A) Tony was being unreasonable - all he had to do was suggest a safer place to put the table.
B) I was being ungrateful - I could have thanked him for his troubles instead of criticizing every little thing he did.
C) Tony should have listened to me instead of dismissing me and ignoring me.
D) I should have given him some space instead of haranguing him while he was feeling besieged by my criticisms.
E) All of the above.

I'm not sure which of the two stories makes me look more sympathetic and Tony look like the villain, but I pick that one, whichever it is. I'd really like to lick my wounds and have my actions vindicated. Poor Shin. Bad Tony. But that's too simple and silly.

All couples have communication challenges. Tony and I certainly have our share. I have my own communication issues now because I can't express myself as well as I'd like, due to the cancer and various side effects. One of my favorite strategies in an argument is to diffuse the tense moment with some humor or a compliment. That takes a certain control of voice, tone, a mischievous smile or flirtatious wink. I don't have many of those at my disposal these days.

But this stymied style of mine is also a reason to open my ears and think a bit more. If I had been a bit more breathless yesterday and really couldn't speak at all, I might have kept my mouth shut and given Tony the silence he needed instead of pushing him to answer me.

I wish I could say cancer has given me new wisdom and depth of understanding about myself and my relationships, but it hasn't. I'm still making mistakes and I'm still fixing them. I'm Bob the Builder. Can we fix it? Yes we can! I'm a work in progress. Aren't we all?

Friday, December 19, 2008

Toby's Tears

Yesterday, we had a minor scare when this silly cancer patient decided to climb on top of two suitcases to put a dangerous toy out of toddlers' reach. I lost my balance and toppled down, landing on my back. I've seen enough movies and TV to know that when you land on your back, you don't move, just in case you've done something to your spine.

The noise I made on the way down - the suitcases tumbling down on top of each other, me landing on the toys littering the floor, a number of things - caused an almighty crash; much louder than the actual danger represented. My in-laws, who are here visiting from the U.S., sounded the alarm and Tony, Josie, and Nana came running in from the pool, dripping wet and scared.

The reaction that really made an impression on me was Toby's. He was in the room when I fell, and the first thing I remember when I found myself lying on that floor was little Toby sitting by my side, his arms around my neck, crying softly and saying, "Mommy? Mommy?"

These were new tears that I'd never seen from Toby before. I've seen angry, frustrated tears, tantrum tears, sad tears. But these were scared tears. The poor little guy was frightened for his mommy. He knew I was hurt (the noise must've really startled him) and he wanted to take care of me but didn't know how.

There are some lessons I've taken away from this incident:

1) Toby is not oblivious to my weakened condition and notices when I need help.

2) Toby has a soft heart for his mommy, even though he acts like a toughie.

3) I need to stop climbing on suitcases.

Wednesday, December 17, 2008

Medical Journals

I had a friend who gave her daughter some prescribed medication one morning. Her husband didn't know she'd already done it so he did the same thing. The poor child ended up in the hospital. Adults take a double dose of something and might feel a bit ill. You do that to an infant and it can cause serious harm. Keeping a medical diary will ensure that you don't overdose your child.

I keep a medical diary for each of my kids. Whenever I give them any medication, I write it down - the name of the drug, the dose, what time I gave it. I jot down their symptoms, their temperature, anything else that might be relevant or helpful to the doctor if I end up having to take them to the hospital.

These records will also provide a thorough medical history for years on down the line. There's no way I'll be able to remember every case of chicken pox or shingles, Hand-Foot-Mouth, flu, bronchitis or allergic reaction my kids have had. Keeping a record has even helped us see some patterns developing.

I keep a medical diary for myself as well - pretty good idea for anyone, but especially for people with a chronic condition like cancer. Since my diagnosis three years ago, I've kept a medical diary with notes of doctors' meetings, my treatments, drugs, doses, blood counts, weight, oxygen saturation level, and other relevant vital statistics.

I've also kept a binder with copies of every formal medical report, starting with my histology/pathology report diagnosing my cancer. In that binder are radiologist reports, tumor marker tests, blood count reports, and other medical records tracking my cancer. This information has been extremely helpful to me and to my doctors.

Remember, you're just one of hundreds of patients your doctor sees in a year. Don't expect him to remember everything about your medical history, even if he does have your file open in front of you. He might just be doodling when you think he's writing notes about your symptoms.

Monday, December 15, 2008

Sorry Tears

I was showing Josie how to send an e-mail and she kept trying to tap random keys instead of listening to my instructions on what she should do next. I got frustrated and snapped at her, "Would you please just stop and listen to me?"

There must have been something in my tone of voice that really hurt her because she immediately stopped and sat still with her head down. Just seeing her like that broke my heart. I don't think she was upset that she'd done something wrong. She wasn't upset that I yelled at her because I didn't really raise my voice very much. I think what really hurt her was the feeling that her mother wasn't pleased with her.

Later that night when I was tucking her into bed, I said, "Josie I'm so sorry about snapping at you earlier today. I still feel really bad about that."

She answered with a very tiny sad voice, "Mommy, please let's stop talking about that because it's making me very sad."

I think I sometimes forget how sensitive Josie can be. I think of her as a tough girl and often remind her that she's tough, like her mother. But sometimes just a harsh word or a feeling that I'm not pleased with her for some reason cuts into her worse than any scolding, time-out, or other punishment.

I have to keep this in mind. These are not the kinds of memories I want her to have of me. I don't want her heart to ache at the thought that she had displeased me in some way.

Friday, December 12, 2008

Brain MRI Results

Good news! I got the results of my brain MRI yesterday and the films show the tumors have almost completely disappeared. The photos on the left are from August and those on the right are from Wednesday. The doctor said this could mean that 1) the tumors are on their way to shrinking down even further, or 2) the tumors are on their way to resuming growth. I'm going to choose door number one.

This was a follow-up scan after the seizures I had in August due to the growing tumors in my brain. I had whole-brain radiation for ten days after that. We'll wait another three months now and do another MRI to see whether the tumors are coming or going.

These MRI results were exactly what I expected. At the risk of sounding cocky, I have to say I've been uncannily accurate about the progress of my cancer for the past few years. In terms of predicting results of scans or the effectiveness of treatments, I've had a better batting average than even my doctors.

For example, for months last year, I was put on various different antibiotics for lung infections and the entire time I kept saying it was cancer, not infection. When we finally did a biopsy and my self-diagnosis proved correct (unfortunately), I was the only person in the room to react with dry eyes and no surprise. It pays to be prepared.

Given my success at reading my own body and disease, I'm going to guess that the current chemo combination is working at least enough to keep the cancer from progressing too much too quickly. The pains and side-effects I've been feeling might be due to the interaction of so many drugs swirling around inside my body. I stopped taking the new pain killers and gastritis (inflammation of stomach lining) medications my doctor gave me after my last chemo session and I've been feeling better. Those drugs just didn't work for me; they might have even caused more pain.

Another good sign: for the past two days, I've felt strong enough to get around without the wheelchair, and although I had a few coughing fits that probably scared or disturbed people around me, I didn't end up gasping for air and having a panic attack. Hooray. Looks like Christmas has come early for me!

Wednesday, December 10, 2008

Cancer Follow-Up, Survival

Since I was diagnosed with breast cancer, I've met many other breast cancer patients and survivors. There are as many different ways of dealing with cancer as there are personalities. Some women want to know everything about their cancer; some want to know nothing. Some are conscientious and participate in their treatment; some want to leave everything to the doctors.

I know every woman has the right to handle her disease and treatment in her own way, but I can't help feeling frustrated about cases where a patient compromises her chances of survival or even hastens her death by not taking an active interest in her own health.

I had a friend who was diagnosed with breast cancer in the U.K. nine years ago. She was treated there and a few years later, moved to Singapore. She didn't go for any check-ups once here. She told me her doctor in the U.K. didn't give her any follow-up schedule, so she assumed she was finished with cancer. Somebody finally convinced her to go for a check-up a few years ago. They found her cancer had come back and spread to other organs. She died last year.

I know other women who have similar stories. They don't follow up; they take bad advice from doctors; they don't seek second opinions or question their doctors. I'm pretty sure some of these women died or suffered unnecessarily as a result.

In the U.S., doctors and patients are far more conscientious about follow-ups after treatment than they are in Europe. A new research study that came out earlier this year showed that breast cancer patients in the U.S. had a five-year survival rate of 84%, compared to 70% for the U.K. Luckily, my doctor follows the U.S. protocol, but even if she didn't, I'd insist on it.

I wish other cancer patients would take more of an interest in their treatment. I wish they'd realize that no doctor will care about them as much as they'd like to think. I wish they'd realize that doctors make mistakes, that some doctors are more competent than others, that some doctors just don't care as much about their patients as others, that you cannot surrender your life to strangers whose motivation for treating you for a killer illness is that they get paid to do it. It's their job. Glorify it all you want, but to them, it's still a job and you're still just one of hundreds and hundreds of patients they see each year.

Cancer patients, please, think, think, think. This is your LIFE you're dealing with. After your treatment is finished, schedule your own follow-ups. Don't leave it to your doctor to tell you what to do. There's plenty of information on the Internet and in libraries and bookstores to guide you on how to go about taking care of yourself after your treatment's completed, so you have the best chance of fighting your cancer if it should ever come back.

Don't leave it until it's too late like my friend who died last year.

Monday, December 8, 2008

Control Freak. So?

People might consider me a control freak, though no one's ever had the balls to say it to my face. Or they're too polite because they think it's an insult. But why is it a bad thing to want to have control over your life? Would you prefer the alternative - lack of control?

Control is the first thing you have to give up when you have cancer. First of all, because you now have a disease you have no control over. Those cancer cells will do what they want, and you and your doctors will do your best but cancer won't listen to reason and step aside just because you want to control those little microbits of death and destruction.

As you go through treatment and the attending pain and weakness, you have to give up more and more control of your life as you knew it. For me, the hardest thing has been letting go control over the kids. There; I've said it. Control over the kids. Today's parenting literature would tell you that we don't control our children, we guide them. Whatever. I'm not fooled by the language. In the end, it means getting our kids to behave the way we want.

But Toby yells rudely to his friend and gets away with it because I don't have the strength or breath to sit down and talk to him about why that's wrong. Josie makes a fuss about trying something new and I'm too weak and breathless to encourage her with smiles and funny jokes.

Before cancer made me so weak and breathless, I'd say eighty percent of my parenting was talking; now it's only about ten percent. I wonder what mute parents do? That must be so hard.

I think that's what lies at the heart of my loss of control: the inability to speak as much as I used to. I can't argue with Tony anymore, so he gets to decide almost everything now, from family finances to what the kids can have for dinner. I used to argue circles around him until he got so dizzy he just let me have my way. No more of that.

And then there's the control over my identity. I used to be a chatty, gregarious, out-going, entertaining person. If someone who didn't know me B.C. (before cancer) met me now, they'd think I was a dull, quiet, shy bore - in my mind, the worst thing a person can be. A piece of furniture. Background. Wallpaper. Ugh. That's what I've become.

I used to know every kid in our neighborhood by name. I used to know who took ballet, who was learning Chinese, which schools they all went to. Now I don't spend any time outside with the kids so I haven't kept up with their lives and can't ask them how their recital went or how their new baby brother is doing.

Same for Toby's kindergarten. I used to walk around the building and call out hellos to the kids. Sometimes they'd look surprised and delighted that I knew their names and asked about them - the way kids do when adults take an interest in them. But now I'm just this frail lady with a funny bald head.

So I've lost control over my persona, my kids, my husband, my body. If you lost all that, wouldn't you freak?

Sunday, December 7, 2008

Third Anniversary

Today is the third anniversary of my diagnosis. This is the date I'll mark from now on, so that I'll know how many years I've survived cancer. And silly me, I forgot it until a reader sent me a congratulatory message.

I could consider it a second birthday, if I think of my life with cancer as a re-birth, a new chance at life with deeper knowledge of self and awareness of my mortality. Sounds good, anyway.

The medical highlights of this past year with cancer:

1) I learned my cancer has spread to my lungs, liver, brain, bones, soft tissue, and lymph nodes.

2) I had a lung biopsy that nearly killed me because I was mistakenly given more than twice the necessary dose of anesthetic during the procedure.

3) I had brain seizures caused by tumors in my brain and had whole-brain radiation.

4) I went through ten different chemo combinations.

Things I've learned this year:

1) I can drag out my dying for a while yet. We can't tell whether I'll last another month or another year.

2) Because of the above, it's still hard to take dying really seriously - for me and for people around me.

3) I've done something useful with this blog.

Saturday, December 6, 2008

Dreams Versus Goals

I was commissioned to write an article for a lifestyle magazine here in Singapore (actually, I think it may just be online, not print). The topic was how I, as a cancer patient, am facing the new year. What are my hopes, dreams, and fears for the coming year. I was okay talking about my hopes and fears, but when it came to dreams, I had little to say.

The word "dream" has always tripped me up a bit. I never really had any dreams growing up. Kids dream about one day becoming a ballerina, an astronaut, or other glamorous characters they see in books and on TV. I never had that when I was a kid. Adults also have dreams of conquering some personal goal - owning their own business, climbing Mount Everest, finding their soul mate. I never really had these sorts of dreams either.

I think my inability to have such lofty dreams comes down to the word itself. A dream sounds so foggy and far away that I just don't like the feeling it gives me of its being unattainable. I prefer to think of dreams as goals. If I were going to dream of owning my own business some day, I'd just set it as a goal and then get it done. Why call it a dream?

So then, did I have any goals growing up? No, didn't have any of those either. As I look back on my life, I'd have to say that for somebody who thinks she's pretty damn smart, I haven't been very creative in putting my intelligence to good use.

Friday, December 5, 2008

Questions From Blog Reader

A blog reader saw the two documentaries about me that I've posted on my blog. She/he had some follow-up questions which I thought were pretty interesting so here they are:

1) Every human fears death. Once they hear the word "cancer", they think there's no cure & death will eventually come. How did you actually react & feel when you first learned that you had cancer?

I was completely taken off guard because my doctor had said the lump was a clogged milk duct. When the surgeon said, "It looks like cancer," I told him I'd like to call my husband to see if he could come and join our meeting to discuss what to do about it. I didn't cry or get scared. I went into information-gathering mode. I didn't know anything about cancer at that point so I didn't even know whether I should be scared.

2) How did you actually overcome your emotions & fears about your illness?

I tackled the problem with knowledge. I got control of the situation by finding out as much as I could about my cancer and learning how best to treat it to give me maximum time alive. I didn't get very emotional, except when I thought about my kids growing up without a mother. I'm not sure I could say I've been very afraid, either. Yes, I'm afraid of the process of dying - the pain and feeling of suffocation when my liver and lungs start shutting down. And then there's the pain and sadness I'm going to put everyone through watching me waste away or worse, writhing in agony. But I'm not religious so I don't think I'm going to Dante's Hell or anything like that.

3) Is there anyone whom you can talk to for advice & encouragement?

My husband Tony and my friend Michelle come to mind, but collectively, most of my friends, family, and even complete strangers through this blog. I also talk to myself a lot (in my head).

4) What are the things that made you overcome the fear of Death?

I don't think I ever really had a fear of Death, just the actual process of dying. Maybe I should. I'll try to think about it more and cultivate a healthy, human fear of Death because I see that it's beginning to bug people that I'm not terrified of dying.

5) What is your Motto & Motivation in Life?

Motto? I need a motto? If I had to have a one-liner that I could call my motto, I'd say it's, "You're stronger and smarter than the average bear so ACT like it!" Motivation in life? To leave this world a better place than it was before I got here, even if it's just a teensy weensy bit, say, in the form of two beautiful kids who will go on to do their bit also. And then their kids do the same, and their kids, and so on and so on until the math works out and the good outweighs and swallows up the bad and we all live happily ever after or at least learn and grow a lot while trying. And if not with kids, with the people we come in contact with and rub off on each day.

6) What do you think is the most rewarding thing that you have achieved or done in this life so far?

Having kids and leaving them with something worthwhile, i.e., this blog and the people who say that I've helped give them strength and inspiration in their own struggle with cancer.

7) What do you think is the most miserable thing in life?

Inhumane behavior, e.g., people who kill in the name of their god, people who hurt children, people who hurt themselves out of self-pity, any behavior that makes me wonder whether human beings really are superior to animals.

Sorry, but there was one more question that I couldn't post because I didn't understand the question. Can you re-send it please?

Wednesday, December 3, 2008

Didn't Your Mother Teach You?!

A number of years ago, in pre-kid days, I was driving down a two-lane street when I noticed that my lane up ahead was blocked by an illegally parked truck. So I signaled to move into the lane to my right. To my surprise, the car on my right didn't slow down to let me in, it actually sped up to come alongside me so I couldn't get into that lane!

When we'd both reached the traffic light up ahead, I rolled down my window and asked the driver of that wayward car if he hadn't seen that I was trying to get into his lane because my lane was blocked by the truck. He said he had. I asked why he hadn't let me in and he asked, "Why should I?"

I was baffled. "Because it would have been the nice thing to do," I said.

His response? "Why should I be nice?"

This guy was in his early twenties, gel in his hair, slave to metrosexual fashion trends. Not that I'm suggesting that his interest in his physical appearance is reflective of his self-centered view of the world, but I am... His buddy in the passenger seat cringed upon hearing what his friend said to me.

All I could think to say back to him was, "Your mother would not be proud of you!"

I know. That sounds like something an old lady would say to some kid trampling all over her geraniums. But that's the first thing that crossed my mind - that somewhere, this young man's moral education had gone awry and it was either his mother's fault or worse, she'd done her best and still he turned out to be morally bankrupt.

As parents, we think about teaching our children manners, basic common courtesy, and right from wrong. Because I might not live to watch Toby and Josie grow up, I think about this sort of thing more than the average parent.

When Toby and Josie don't greet visitors properly, when they don't say "thank you" and "please", when they speak rudely to adults, I can just hear people thinking, "Didn't their mother teach them properly?!"

I even tell the kids that people will think that. I tell them that if they have bad manners or behave badly, people will think they had a bad mother. (This is the passive-aggressive guilt technique that Korean and Jewish parents are famous for.)

For some reason, lessons in manners and basic codes of behavior seem to be the province of mothers, not fathers. I didn't tell that twenty-something driver that his father would be appalled by his behavior. It was his mother I blamed.

Maybe Toby and Josie will be given a pass in this area of their lives. When they burp in public, when they let a door slam into the face of the person behind them instead of holding it open, when they walk into an elevator before the other passengers get off, when they don't use their signal lights in the car, when they don't let pedestrians have the right of way, when they treat shop clerks or waiters with disrespect, when they don't clear their own litter in public eating places... people will whisper to each other, "They don't know any better. You see, their mother died when they were very young." And people will nod their heads knowingly, with sympathy.

Tuesday, December 2, 2008

Grim Reaper Dream

I had a dream about the Grim Reaper last night. I should put it in context. Before bed, I saw a brief snippet of a TV show, "Dead Like Us", where Reapers go around collecting dead people's souls. It's a comic drama, rather than a serious scary show that the topic may imply.

In my dream, I saw a teenaged hoodlum across the street bothering somebody - a little old lady or somebody defenseless. He was wearing a black hood, jean jacket, blue/brown plaid shirt, too-big jeans (a la gansta fashion), and sneakers. I ran across the street and grabbed the urchin by the neck and raised him into the air - he was surprisingly light, weightless even.

As I did that, I could see inside his black, pointed hood into a dark void. There was no face in there. Then it hit me that I was dealing with the Grim Reaper. But I was still annoyed with the audacity of this gangster boy bothering a little old lady so I smacked him around anyway. Slap, slap, slap. He didn't respond, just floated up there as I held him up by the neck. I finally let him down and told him he could hang around as long as he didn't bother anyone else. And that was that.

Monday, December 1, 2008

Lessons In Listening

The other night, Josie needed help in the bathroom after Toby had gone to sleep. The two of us had to be quiet so we wouldn't wake up Toby (the bathroom is inside the kids' room). When Josie was finished, she started opening the door, letting out the light and the noise while I tried to tell her several times not to open the door. She just ignored me and opened the door anyway, which really annoyed me.

I told her to step back into the bathroom and asked her, quite irritated, why she'd done that. She looked completely puzzled and explained, "But Mommy, I didn't know what you were saying to me. The toilet flush was making a noise and the sink water was on and you were talking to me at the same time so I couldn't hear what you were saying." Then it occurred to me that she had a legitimate explanation, but here I'd gone and gotten all annoyed at her because I thought she was intentionally ignoring me.

Then I wondered... what if I hadn't given her a chance to explain herself? I would have just assumed she was being a brat and ignoring me. I wonder how many times a day we do this to our kids? We just assume we know what our kids are thinking, doing, or intending, so we just don't listen to them or give them a chance to explain themselves. I wonder how much we miss as a result?

I've noticed something that all parents do. We ask our kids a question, then don't listen to the answer. Or they talk to us, go off on long-winded explanations and we say absent-mindedly, "Oh? That's great! Uh-hum. Really? Right." Meanwhile, we don't make eye-contact with them or really listen to what they're telling us.

Sometimes, when our kids repeat the same thing over and over again, we get annoyed and yell at them, "Okay! I heard you already! Will you just give me a minute?!" The thing is, if you'd answered him or at least acknowledged in some way that you'd heard him, he wouldn't have said it over and over again until it got annoying.

I know we do this with adults as well, especially between spouses or among family, because we're used to being with each other and ignoring each other.

But with kids, this type of behavior is really baffling. What are we teaching them? How to be annoying to adults? How to be ignored? How to keep saying the same thing over and over again, each time louder than before?

One very fortunate side-effect of my cancer is that I've become a better listener - not because I've gone all Zen and reflective, but because the cancer in my lungs makes breathing difficult and I can't talk as much. So for once in my life, I listen more than I talk.

Now, I find I pay much more attention to my kids. Toby has recently discovered the art of monologue. He can go on and on about who-knows-what, whether somebody is listening or not. And when I stop and listen, really listen to him, I'm often rewarded with imaginative, funny stories and priceless peeks into his mind that I wouldn't have otherwise. From eavesdropping on his ramblings to himself, I've gotten to know a side of Toby I would have missed. To think... I would've missed this about him.

Saturday, November 29, 2008

Another Documentary - VIDEO

This is a documentary by Singapore broadcaster, MediaCorp, for their series, "Gentle Good-Byes". It was aired on October 29, 2007. I'm featured in the third segment, in the second half.

Click on the picture to start the video. Click again to enlarge.

Friday, November 28, 2008

My Documentary - VIDEO

This is the documentary that Singapore broadcaster, MediaCorp, did about me for their series, "In The Face Of Death". It was aired on November 4, 2008. Click on picture to start video. Click again to enlarge.

Pain Expectations

I've heard this line in a number of movies where somebody is going through trauma or tragedy. "Life isn't supposed to be this hard." Or "Love isn't supposed to hurt this much."

That would make me think, "What's the point of saying that?" You're just telling her she should feel lousy about what she's going through and how she's feeling about it. Wouldn't it be easier to think that actually, everyone has a tough life and everyone feels the pain? That's just how life is and there's nothing special about you. You don't have to feel like the universe has targeted you. You don't have to feel like a victim or martyr because that's not going to improve your situation anyway.

I feel the same about my cancer pains - the physical pain, I mean. It hurts a bit. Except I don't know if this would be considered "a bit" or "a lot". Is it supposed to hurt this much? If yes, then I'll just shut up and take it. If not, I might complain about it. If I do the former, I keep my pain to myself and don't become a nuisance to people around me with my whining and complaining. If I do the latter, I don't lessen the pain; I just increase the annoyance factor for anyone within hearing range.

If I think it's supposed to feel like this, then I get on with it instead of dwelling on it. Everyone with cancer has pain. I have cancer; I have pain. Of course, I take the pain medication and that helps a lot, but it doesn't get rid of all pain. At least it's not disabling or crippling pain.

I used to think I had a high tolerance for pain. Then I had babies. For the most part, I managed pretty well but we had to call in the epidural in the end for other reasons. But the timing of the epidural was off and I felt the contractions anyway. Now that's pain!

No woman giving birth does the "Woe is me, I'm suffering so much pain, you just can't understand what I'm going through" sob story because she's not special. Every woman who gives birth feels this pain. It's universal. There's no sympathy from the galleries. We don't tell them, "Giving birth isn't supposed to be this hard; it's not supposed to hurt this much." We tell them, "Pushing out a baby hurts like hell so expect it, prepare for it, and don't expect a prize for going through it because you're just like millions of other women who do the same thing every year." Have you ever heard anybody say to a woman who's just given birth, "Oh, poor you. That must have really hurt!"

So maybe it's the same with cancer. Expect the pain. Prepare for it. Don't expect any prizes. Suck it up and maybe it'll seem normal and less painful. And if that doesn't work... pass the morphine!

Thursday, November 27, 2008

Thanks Giving Kids

We had Thanksgiving dinner at a friend's house today. In the car on the way over, I tried to explain to Josie and Toby what was so special about today. The conversation went like this:

Me: Thanksgiving is a day when we think specially about things that we're thankful for. For example... I'm thankful for Toby and Josie, and Daddy, and...

Josie (interrupting): I'm thankful for all the loving and caring people in the world!

Toby: And I'm thankful for Mommy's huggies and kissies!

Wow. Weepy Mommy moment. I end my Thanksgiving Day here with happy tears. Good night.

My Thanks List

Happy Thanksgiving to all my American friends and family!

For the rest of you... you people really ought to get a holiday like this. It's the best holiday ever. You get to stuff your face and drink all day, laze around and watch football and old Christmas movies on TV - all in the name of dedicating the day to being thankful. Good stuff.

I told you yesterday that I'd keep a list of the things I was thankful for throughout the day. This was my list:

- A good night's sleep.
- Pain medication.
- Oxygen machine.
- Tony giving me a kiss before leaving for work.
- My MacBook.
- My friend Katie who took me to chemo.
- My mother-in-law, Carol, who also came with me to chemo.
- My oncologist and her staff.
- Singapore's high-tech healthcare system.
- Funny, well-written, trashy novels.
- Chocolate croissant and hot chocolate drink - together.
- Kisses and hugs from Josie and Toby. Toby calls them "huggies" and "kissies".
- My "cough pillow".
- My friends Alan and Alison who divorced each other but didn't divorce me.
- Soft mattress.
- What-I-did-today e-mails from my friends Shelly and Deb.

Keep in mind this is just one day and the things and people I encountered during this one day. Tomorrow's list will be different. And so will the next day's. Ah! It's good to be alive to make new lists of thanks each day!

Wednesday, November 26, 2008

Little List of Thanks

Tomorrow is Thanksgiving, my favorite holiday. I could get sentimental and say it's my favorite holiday because it's a time when families come together and give thanks for all the wonderful things in their lives. But I'd be lying. It's the food I love. Roast turkey, mashed potatoes with gravy, stuffing, and pumpkin pie. If I were on death row, this would be my request for my last meal. We (Americans) have this menu for Christmas dinner as well, but I don't like all the materialism and focus on gifts that come with Christmas so I prefer Thanksgiving. Baaah! Humbug!

Usually at the Thanksgiving meal, we go around the table and each person names one thing he's thankful for. The usual list includes family, friends, good health, financial security, and so on. Big things.

This year, I decided to focus on small things. I'd spend one day making a list of things I'm thankful for throughout the day. I got this idea from a magazine, and in that article, people had things like Starbucks and hot showers on their lists. Today, I'll take a little pad of paper and a pen around with me all day and whenever I notice something I'm thankful for, I'll jot it down.

Tomorrow, on Thanksgiving Day proper, I'll post my list on this blog. I'd love it if you did the same so we could compare lists. If nothing else, this little exercise might help us remember all the little things we have to be thankful for.

Until tomorrow...

Monday, November 24, 2008

Tom's Diner

I went to university in New York City. Often after an all- night session of club-hopping, we'd stop at Tom's Diner, several blocks from Columbia campus, to eat greasy cheeseburgers, drink chocolate milkshakes, and detox a little.

One particular night (actually, it was about 5 a.m. by then), I was at Tom's with my friends, satisfying our post-alcohol food cravings while the buzz of the booze was wearing off. The diner was full of college kids, calling out to each other, laughing, joking, and having a great time being young and carefree.

I looked around me, soaking in the vibrant, party atmosphere and marveling at how fun it was to be young, alive, and eating cheesy fries after dancing all night. I wondered if I were appreciating it enough. I wondered if I'd remember this moment.

Then I played a little mind game with myself. I closed my eyes and imagined myself in the future as an old lady. I imagine myself saying, "I remember that night at Tom's Diner. I wish I could feel that again. What I'd give to be young again and transported back to that moment."

And POOF! I opened my eyes and I'd gone back in time to my college days and there I was. Suddenly, the lights seemed brighter, the fries tasted tastier, the smiles seemed smilier, everything seemed more intense.

Because I'd consciously forced myself to preserve that moment in my memory files, I can still transport myself to that night and feel, hear, and see what was there.

Ahh... Tom's cheesy fries... I can taste them now...

Friday, November 21, 2008

Mother, In Spite Of Myself

I was chatting with a friend recently about having babies and I came to a surprising realization. I never really wanted kids and I still don't. It's not kids I want; it's Josie and Toby.

If Josie and Toby disappeared tomorrow, I wouldn't want any more children. It's not the idea of motherhood that I'm in love with; it's not the day-to-day pleasure of being a mom that I enjoy; it's Toby and Josie. I wouldn't want to be anyone else's mother, simple as that.

I have many friends who were really into the whole pregnancy experience. I thought it was a very inconvenient nine months of my life. Times two. I didn't like being fat, clumsy, and toward the end, downright absurd looking. I was HUGE.

Some women even savor the delivery. I just wanted those things out of me so we could go straight to cuddle, cuddle, kiss, kiss. Skip right to baby-powder smelling infant in arms for the photo op.

And this pride in being a mother as a concept... I don't get into that either. I have no desire to be just anybody's mother. I want to be Toby and Josie's mother. Just like I have no desire to be somebody's wife just for the sake of being somebody's wife. I want to be Tony's wife.

So I realized that it's not the role or title of mother or wife I'm interested in. Because frankly, the idea of being somebody's wife or some snotty-nosed brat's mommy used to give me the willies.

But now that I have Tony, Josie, and Toby, I wouldn't have it any other way. That's made me realize there is something incredibly special about these three in my life - nobody, absolutely nobody else will do. They are utterly irreplaceable.

Thursday, November 20, 2008

My Documentary Online

Some of you have asked to see the documentary film about me online. MediaCorp (Singapore broadcaster) says the licensing fee to upload the film onto a URL is S$513 (US$336) for the first year. I think that's too much for me to spend so I'm very sorry, but I won't be putting the documentary on my site. I really appreciate your interest.

Wednesday, November 19, 2008

What's "Cancer-Free"?

A reader wrote:

"I found it puzzling as to why the cancer returned so quickly... as you had been declared "cancer-free"... unless there had been some latent/undetected remnants which had failed to be removed from the ops or by the chemo." [The reader went on to suggest my doctor had made a mistake.]

Here's my response:

I think most people are confused about what "cancer-free" means. In the U.S., doctors have stopped using the term. They now use the term, "No evidence of disease" or "N.E.D." This is because there is, technically, no such thing as cancer-free. You can use every fancy scan available in the medical world but if only one tiny little cancer cell has gotten into your blood stream, lymph system, or is hiding somewhere in your tissues, it will not be picked up, and there will still be a possibility that cancer will return some day.

A tumor needs to be the size of a pea to be detected on any scans. That's millions of cancer cells. So just imagine one single cancer cell somewhere in your body - there's no way that any scan or any doctor, no matter how technologically advanced or clever, can find a stray cancer cell. Therefore, you can never be said to be cancer-free.

If my doctor made any mistake at all, it was in being too optimistic, telling me I was cancer-free, when she should have said there was no evidence of disease. She was trying to give me hope, so I don't fault her for that. If she had given me the above explanation about why I could never be cancer-free at that point in my treatment, I might have considered her a pessimistic killjoy.

I feel sorry for doctors. They tell the medical truth and they're accused of being pessimistic. They put a positive spin on the news and they're accused of hiding the truth. I think my doctor gave me the news I needed in the way I needed it at that time. I think she really believed my cancer was gone - at least for a long, long time. She was just as confounded and shocked as I was to learn it had returned so quickly.

Nobody can guarantee that your cancer won't come back. Likewise, for people who've never had cancer, nobody can guarantee that you'll never get it. But if you life a healthy lifestyle and are lucky enough to keep cancer at bay for another twenty, thirty or more years, you might as well consider yourself cancer-free and die with good ole NED instead.

Monday, November 17, 2008

Alternative Treatments

Many of you have written to me to recommend alternative treatments. You've given personal testimonials from your own experience of being "cured" of cancer by a particular treatment. Or you've seen a loved one "cured" after doctors gave up and said there was nothing more to be done. I've read your recommendations but am not posting them on my blog for these reasons:

1) I don't want to give readers hope in treatments I know nothing about myself.

2) I don't want to send readers on wild goose chases when they are at their most vulnerable, desperate to find a way to keep themselves or their loved ones alive. I want to have nothing to do with companies that might be preying on the weak and taking advantage of the ignorance and helplessness of others.

3) There is plenty of information about alternative treatments already available on the Internet, at the library, and at the bookstores. You don't need my blog to tell you about them.

4) I'm sure some of these treatments work some of the time for some of the people. But nothing works all the time for all patients, including conventional treatments such as chemotherapy and radiation. There are too many factors at work, such as the synergistic effect of certain medications and the individual biochemistry of each patient. It's too simplistic to think you can treat cancer with any one solution, even chemo.

5) There's no such thing as "cured" of cancer. I'll write about that in another post later this week.

Friday, November 14, 2008

Blaming Doctors

It seems the first thing people want to do when something goes wrong is look around for somebody to blame. When it comes to doctors, I think we tend to assign blame more than usual because we expect them to know everything. Here's a news flash: They don't.

They learned about the human body and diseases from going to classes and reading books - the same way I learned about French deconstructionist philosophers. That doesn't make me an expert on the topic; it just makes me more of an expert than you. Doctors get their training and practice the same way a car mechanic does - by learning on the job. And doctors hone their skills the hard way, just like the rest of us do - by learning from their mistakes. Every patient a doctor has adds to his body of knowledge and experience. You are his learning aid.

People tend to put doctors on a pedestal. Maybe it's those fancy certificates written in Latin hanging on their waiting room walls. Maybe it's their air of authority or even bossiness as they order their nurses and other staff around. Maybe it's their medical language that excludes civilians from their secret society and gives them an aura of special insight and knowledge - like saying "pleural effusion" instead of "fluid in the lining of the lungs" or "dyspnea" instead of "difficulty breathing".

But the bigger they are, the harder they fall. And as authoritative and infallible as doctors may seem, when they do make a mistake, the blame and criticism is as severe as the reverence was strong while they were on the pedestal.

Do yourself and your doctor a favor. Don't raise him up so high that he'll crush you on his way down. Be realistic and work with him. He wants you to live. You want you to live. Work toward that common goal.

Thursday, November 13, 2008

A Cautionary Tale

Some of you have been asking for updates on Nadya, the four-month-old daughter of Peto, a reader of this blog. Nadya was in the hospital for heart surgery last Friday. Peto gave me the following update, which upset me very much. I think it's worth sharing with you because Peto's experience may one day save the life of somebody you love - somebody who can't speak for herself.

From Peto:

Saturday is a day I wish to forget; Nadya experienced a full left lung collapse because of negligence, complacency and bad management by the hospital staff.

Nadya was in the ICU, recovering from surgery. Thirty minutes after they removed the oxygen tube, I noticed her heart rate was going up drastically from 100 to 190, with the alarm sounding in a span of 15 minutes. I was in and out of the room informing the staff of the abnormal spike and Nadya's strange behaviour: hands flailing, legs kicking, hoarse crying and scared eyes.

I was told the increase in heartbeat was normal as she now required more effort to breathe on her own and she was probably in distress from crying, but somehow it didn't seem right to me as I had never seen those eyes before and there weren't any tears. Her voice was hoarse as if gasping for air.

As I coaxed her to calm down, I felt her head was feverish and immediately sensed that this wasn't right as her temperature had been 36.5 degrees just 30 minutes earlier. I quickly sounded the nurse again and she actually had to confirm the temperature with a thermometer under Nadya's arm pit, awaiting for it to beep, rather than a quick touch on the forehead. That waiting seemed endless and finally it beeped showing 38.2 degrees.

Luckily, a doctor happened to stroll by. I was then left standing outside as the staff spent 30 minutes in a panic, searching for a size 4 oxygen mask for Nadya. All I could see were nurses and doctors scrambling in and out the room, avoiding my eyes.

My heart sank when I saw a nurse doing a cross sign touching her forehead and shoulders as she came out. When I was allowed to go in, I broke down seeing Nadya's frail body attached to a huge mask trunk. They said there was high CO2 accumulation (up to 79?) with low oxygen. An x-ray showed full left lung collapse.

Thankfully, she is recovering well and under monitoring but I think I will be haunted by Nadya's scared eyes for a long time.

Advice from Peto:

I wish to say to all parents that you should never leave your children alone in the hospital no matter how safe you think they are. It's such an irony that all this could happen in an ICU ward and some of the explanations given by the doctors were very disturbing, such as:

- Nadya's ordeal is not uncommom after oxygen tube removal.
- We do have a mask on stand-by but unfortunately, it did not fit Nadya. And we used a hand pump while searching for the mask.
- It is understandable that as a parent you tend to take these things a bit harder although I think the situation is not as bad as you have perceived.
- Anyway, she is fine now!

All these remarks came after I told them that I hope they can learn from this experience as we could have lost an innocent life with this negligence.

- If it is not uncommon then shouldn't the tube removal be accompanied by close monitoring?
- Nadya was there for 2 days before the tube removal. The correct mask size should have been determined. What is the point of having a mask on stand-by if it doesn't fit the patient? FYI, Nadya has a perfectly normal head size for her age.
- Nadya was in distress during the 15-20 minutes it took to get the nurses' and doctor's attention, plus 30 minutes of mask-searching with the final diagnosis as lung collapse and CO2 built up due to lack of oxygen. And this doctor has the nerve to talk to me about parental over-reaction.
- The last comment is so irresponsibly shallow.

[Note from Shin: I don't like bashing doctors and nurses. I think they're human and they make mistakes like the rest of us. It's their unwillingness to admit to, apologize for, and learn from their mistakes that bothers me. A simple "sorry" would have made all the difference in the world to me in this situation.]

Wednesday, November 12, 2008

One More Year

Today's my birthday - the third one since I was first diagnosed with cancer in December 2005. Here's what I wrote in my blog last year on my birthday:

"Should I make a prediction about where I’ll be at my next birthday? I’ll still be in Singapore, I’ll still have cancer, I’ll still be alive. That sounds terribly boring. I hope I can do something between now and then to make that year worth having."

Now I have to ask myself what I've done with this past year that made it worth having. The most obvious answer is that I spent more time with my kids, but that would have been the case even if I didn't have cancer.

In terms of achievements, I think the only thing I can claim to have accomplished this past year is this blog. Without sounding too conceited, I think this blog has provided other people touched by cancer a place to share experiences, learn from each other, and just feel safe, accepted, and inspired.

Looking ahead at one more year, I'd like to set some kind of concrete goal so that on my 43rd birthday, I can look back and say I've accomplished that task. I'm just not sure what that goal should be.

I'd been thinking about setting up a breast cancer information Web site for Singapore, but I see now that there's quite a lot of information out there already on the Internet. I wanted to start a communication training program for health care professionals (after going through some terrible experiences myself), but the hospitals here have already started such a program - maybe due to my volumes of feedback?

So I'm still working on having a goal to strive for in this year ahead. I'm one of those people who likes making lists and ticking off the tasks as they're completed. I'd like to tick off a box a year from now. But I suppose I should be happy enough to be ticking at all.

How about you? What have you done with this past year that made it worth having?

Monday, November 10, 2008

Practically Positive

A blog reader wrote:

"There will be a cure. Shin, you will benefit from the best cancer drugs and survive... Your tumours will melt away and you'll still be here... Your tumours WILL MELT away, they will, don't worry."

My first reaction was, "Hey, isn't that denial, the first of Kubler-Ross's Five Stages of Grief?"

I have cancer in my brain, liver, lungs, bones, soft tissue, lymph nodes... practically everywhere but my toes and eyelashes. My doctors say they've never seen a cancer so aggressive. I'm on the tenth chemo combination so far this year because they either don't work or are too toxic for me to stay on them. Under these circumstances, thinking that my tumors will suddenly disappear and I'll survive to see a cure qualifies as denial, doesn't it?

But I don't think I'm in denial. (Hey, is that denial?) Given the progression of my disease and the current developments in cancer research (fast, but not as fast as my cancer), I'm pretty sure I won't live to see the cure.

Let's say I have five months to live and I divide that time up into the Five Stages of Grief: denial, anger, bargaining, depression, acceptance. What a waste of four months that would be. If I just skip the first four stages and go straight to acceptance, then I can have five good months instead of just one.

Some people would consider acceptance the same as giving up. Those would be people who've never actually faced terminal illness or death. I can accept that I'm going to die of cancer. I would be unreasonable, nay, in denial, not to. Once I accept the reality, I can move on to enjoying the time I have left. If by some miracle I don't die of cancer, that would be an extra bonus. And I will not have lost anything by accepting the possibility and enjoying my remaining time.

So just because I'm not spending my time following Kubler-Ross's Five Stages and getting angry and depressed (Stages 2 and 4) about my situation doesn't mean I'm in denial. It just means I'm being realistic and smart about the time I have left, whether it's five months or five years.

Saturday, November 8, 2008

No More Proselytizers

This is in the comment thread, but I thought it worth repeating here:

A blog reader wrote:

I had a suggestion (after the deluge of religious comments in the previous threads): why not start a post (titled "Save Shin's Soul" or some such) specifically for your many religious readers. Then from now on, any irrelevant religious proselytising can be written there directly or pasted there by you from other threads.

I just feel that the many interesting comments by you and others get swamped - or sidetracked - by the virtual door-knockers. It really is impressive how much grace and patience you manage to respond with, having already stated your beliefs countless times.

My response:

Maybe you're right. Others have also complained about all the comments from Christians trying to convert me.

From now on, I'll try to limit the religious commentary to ideas that are somewhat fresh and interesting.

I will try not to post comments that say the same things about how much Jesus loves me and how my life on this Earth is meaningless if I don't accept God. These commentators might have good intentions, but I guess they don't know my background enough to see that I probably have had more exposure to religion than they have, and that I have well thought-out reasons for rejecting religion. If interested, do a search on my blog for "God" and "religion".

So, no more comments from proselytizers on this site.

Friday, November 7, 2008

Jekyll and Hyde

I've been going through over three hundred comments you readers have sent me since the local TV channel aired a documentary film about me last Tuesday. I'm getting comments with all sorts of praise about what a great mom, wife, friend, human being I am. You're using words such as hero, idol, role model, inspiration. You say I've taught you how to truly appreciate life, your loved ones, yourselves.

The person I see emerging from these comments doesn't feel like me. I feel like I'm wearing a lovely coat that you're all describing with flattering words, but that's only because you have no idea what I'm wearing inside that coat.

Of course, this just goes for those of you who only know me through this blog.

My friends and family who know me personally know that I can be short-tempered, judgemental, arrogant, opinionated, intolerant, sarcastic, sharp-tongued, and downright cruel with my verbal scalpel.

I'm one of those people who thinks it's silly for pet-owners to spend billions of dollars on their cats and dogs instead of on orphans and other needy humans. I don't believe in the death penalty but if anybody hurt my kids, I'd change my mind in a hurry. Hallmark Cards make me want to puke. I always think I'm the smartest person in the room - any room. My favorite line from a book is from Flannery O'Connor: "She looked at nice young men as if she could smell their stupidity." My second favorite line, also from Flannery: "She would of been a good woman, if it had been somebody there to shoot her every minute of her life."

I think people (Americans) who keep guns in the house and have kids should be lined up and shot (not really, but you get the idea). I think the fact that Americans elected George Bush two times in a row shows just how stupid they are (I didn't vote for him). And the only reason why his party didn't win this time around is because most of the people who voted Republican before shot themselves by accident in their own homes.

I'm the person who yells at a homeless man, "Get a job!" But then I buy him food when nobody's looking. I'm the person who yells insults at a customer service employee for being stupid and incompetent, then goes back the next day to apologize for being such a bitch. Classic Jekyll and Hyde.

So you see... I'm not this warm and fuzzy person your comments make me out to be. I have my faults and weaknesses just like everybody else. Except I don't necessarily see them as faults. I think this is what makes me spicy. And as they say... if you can't handle the spice, go hang out in the Hallmark Card section.

Thursday, November 6, 2008

A Father's Strength

I received this comment from a blog reader and it really got to me. I thought it was worth sharing with you.

From "peto":

Today is one Black day - the kind that can only happen in the movies, but...

I'm glad I watched Channel 8; otherwise I wouldn't have met the most special mum in the world.

I'm also glad my 4-year-old daughter actually watched through the whole of your amazing story with me, without her usual complaints for attention.

Tasha: Daddy, who is this lady and what happened to her?

P: Mmh! She is very sick just like 'Po Po Doreen' (my aunt).

Tasha: Why is she so happy?

I was speechless for a while although there are many obvious reasons I could have given her:
Blessed with ...
* Wonderful family and friends.
* Lovely Josie and Toby.
* You just decided to be happy.
* Happy Bald Angel (hope you don't mind)

But I guess this innocent question speaks for what wonderful lessons you are bringing into our lives.

Tasha: Hey! Daddy, you have not answered my question!

I just gave her a huge warm hug and whispered to her that... we must love and live happily just like you.

P.S. This is my first blog comment and I have added it to my Favorites as I plan to learn from every entry after my 4-month-old daughter's heart surgery this Friday.

[From Shin: "Peto", my thoughts, and I'm sure the thoughts and prayers of many who read this blog will be with you and your family this Friday. Please let us know how your daughter is doing.]

Wednesday, November 5, 2008


I now have over 300 comments on my blog that I need to go through, so please bear with me if you don't see your comment posted yet. I'm reading and posting them in the order they come in, so the most recent ones will be read last. So if you'd like to read your and other readers' comments, go back to earlier posts from this week and you'll see a backlog of them.

All of your comments are important to me, so I'll take my time to make sure I read each one carefully.

Thanks again for your continuing contribution to this blog.

Film, Tests, Wheels

Many of you watched the short documentary film that Channel 8 aired last night. Thanks for taking an interest in me and my story. I thought Valerie, the producer, and her crew treated our family's story with great sensitivity and I'm grateful for their professionalism and hard work. Just half an hour after the show ended, I opened up my laptop to find more than 100 new messages in my Inbox - all having to do with the documentary. Most of these are very kind comments from you about the film and about my blog. Thanks for that. I'll slowly but surely get to your comments. I may not post or respond to each one due to my health, but I will certainly read all of them.

I had more tests yesterday - a chest X-ray to look at the lungs and a liver ultrasound to look at the liver. Not much change from before, so we're continuing on this course of Avastin + Ixempra. If and when my condition starts getting worse, we'll try another drug, possibly Abraxane + a HER2 targetted therapy such as Tykerb, which I've been on before. We've increased my dosage of Dexamethasone (steroid) to see if it will help with my breathing problem. If I continue to have trouble breathing, we'll move on to morphine. If that doesn't do the trick, I'll have the fluid drained from my lungs.

I did indeed get a wheelchair, but alas, not the tank version I showed in the photo in my earlier post. The world is a different place when viewed from a wheelchair. I can't really control where I go; I just get pushed around. Now I know how babies in strollers feel. That's another thing. Every time I see a kid in a stroller now, I want to challenge him to a race. When I see somebody else in a wheelchair, I want to try to go faster. Hey, I've gotta get my kicks somehow. Today, Tony wheeled me to the entrance of a public bathroom (toilet), and then I got up and walked unassisted into the bathroom. That must've looked a bit funny to onlookers. I thought of going to one of those Christian healing sessions so I could let the preacher put his hands on my head and then I'd jump up out of my wheelchair and yell, "Hallelujah! I'm healed! Just kidding!" I wonder if the preacher would find that very funny.

Tuesday, November 4, 2008

New Blog Rules

First, I'd like to thank those of you who are regular readers of this blog for your encouragement and your participation in some interesting discussions we've had here. Your words of support and the knowledge that I've had some positive impact on you have helped sustain me and made me feel like I'm doing something useful with the time I have left.

Unfortunately, due to my health and the increasing number of comments I've been receiving, I'll have to change a few rules for the use of this blog, as follows:

1) I'll read every comment I receive, but I won't be able to publish or respond to all of them. If you find that your comment has not been published, please don't take it personally. Please know that I'm grateful for every word of support and encouragement I receive from you, and although I'd like to thank each one of you with a personal response, it's become rather difficult for me to do that now. I just want you to know that your kind words DO mean a great deal to me, and they'll mean a lot to my children after I'm gone and they read this blog their mother has left behind for them.

2) From now on, your comments will be edited for clarity and brevity. This is to help other readers of the blog understand your ideas more clearly and keep your opinions from getting lost in the rambling that many of us tend to fall into when talking about something emotionally charged (I speak for myself here). I have to confess, also, that I'm an old fogey and am not quite hip to the phone text abbreviations and other modern lingo that some of the younger readers of this blog use in their comments. To help myself and others of my generation, I'll do my best to translate such cryptic lingo, but if I can't understand it, I'm afraid I won't be able to publish it. So please humor me. Besides, remember that I have tumors in my brain - there's that Cancer Card!

Thanks so much for your understanding and for continuing to contribute to this blog. You say my blog is helping you in many ways... you have no idea how much all of you are helping me.

Monday, November 3, 2008

New Wheels?

I'm thinking of getting a new set of wheels. Nothing flash like an Aston Martin or even a Ducati. More like... a wheelchair.

Tony's been suggesting I get a wheelchair so I can get around more easily without coughing and losing my breath. I've been mostly house-bound since my brain tumor-induced seizures in August.

When I do get out of the house once or twice a week, I have to walk at a snail's pace, which turns a 30-minute shopping trip into a half-day affair. If I try to move faster, I lose my breath, start coughing, and that starts a vicious cycle of coughing and breathlessness that leaves me gasping and feeling suffocated. That pretty much takes the enjoyment out of being out and about.

A wheelchair would allow me to zip around the supermarket without the danger of coughing up my lungs. I'd have to get one of those portable oxygen machines to attach to the wheelchair. Of course, then I'd really look like a sick person. Right now, I could still pass for somebody with bad hair sense, but in a wheelchair, I'd definitely look like somebody on her last legs... or wheels.

People who know me might think I'd be the kind of person who'd stubbornly refuse to give in to her physical limitations and resist anything like wheelchairs or oxygen tanks. But as stubborn as I am about my self-sufficiency, I'm also no idiot. I can either stay in bed indefinitely or I can get some wheels and interact with the outside world.

Who knows? I could have some fun with this. Maybe I can put Toby in his stroller and challenge him to a race.

Here's the model I'm considering.

Photo courtesy of Ronnie Ng.

P.S. Reminder: The short documentary film Channel 8 did about me is airing here in Singapore tomorrow, Tuesday, November 4 at 10:30 p.m.

Friday, October 31, 2008

Cancer Battle Humor

By now, you might be tired of all the cliches about battling cancer, fighting the good fight, discovering the hidden strength within, and so on.

Here's a funny article titled, "Loved Ones Recall Local Man's Cowardly Battle With Cancer". This is from The Onion, a satirical news site.

Have a good laugh!

P.S. Channel 8 here in Singapore has filmed a documentary about me and my fight with cancer. The program is part of a series titled, "In The Face Of Death". It will be in English with Chinese subtitles. Broadcast is next Tuesday, November 4 at 10:30 p.m.

Wednesday, October 29, 2008

Donate For The Cure

My friend's sister, Deborah, is doing a three-day walk to raise money for "Susan G. Komen for the Cure" and National Philanthropic Trust, which fund breast cancer research, education, screening, and treatment.

If you can donate any amount at all to contribute to Deborah's effort, and more important, the foundation's effort to find a cure for breast cancer, please click HERE.

As I've said before on this blog, I think a cure will be found within the next decade. That's not just idle speculation. My prediction is based on what I've been reading and where I've seen cancer research heading in recent years. In fact, it was two years ago when I predicted this, so there are only eight more years to go. If I could just hold on for eight more years...

Monday, October 27, 2008

Improv Problem-Solving

Imagine this: You're in the kitchen making dinner and your four-year-old son throws a kitchen utensil at you and screams, "I HATE YOU!" Quick. What do you do? (The projectile missed you, by the way, so no first aid needed.)

This happened to a friend of mine. She was going through a divorce and her son wasn't taking it so well. Most of us in this situation would yell and send the kid to his room for a time-out. In earlier times, that kid would have been spanked until his bottom was blue.

But it so happens that my friend does improv comedy for a living. When she found herself facing off against her little ball of anger, she didn't go with the common response. Instead, she turned to her improv skills. She asked herself, "What do I have? What do I need?"

What she had was an incredibly tense situation with a frightened, angry little boy. What she needed was to remove the tension and fear so she could reassure her son that he was loved. She needed to get beyond the behavior and deal with the cause of the behavior.

So she fell down dead. She grabbed her stomach and theatrically reeled around the room gasping for breath and then collapsed on the floor. The heaviness in the room dissolved, her son laughed, and they were able to talk through what had happened.

I've never forgotten this story my friend told me. I use this improv technique myself now.

When I was told after my lung biopsy that it was indeed cancer in my lungs and not an infection, I saw the fear and sadness in Tony's and my friend Michelle's eyes. I asked myself, "What do I have? What do I need?" I had two of the people I loved most in the world scared out of their wits, thinking they were going to lose me. I needed to take the fear and heaviness out of that room. So I cracked a joke and made them laugh. The world seemed right again. We could still laugh.

When Toby throws a tantrum because I won't take him swimming, I ask myself, "What do I have? A little boy who's angry that his mommy can't play with him like she used to. What does he need? Reassurance that his mommy can still do things with him and pay attention to him." So instead of yelling at him, I take him to his room and read books with him - something quiet and physically less strenuous that I can do and that makes Toby feel he has me all to himself.

I recommend you try this yourself. Next time you're faced with a tense, crisis-like situation, stop for a minute and ask yourself, "What do I have? What do I need?" A little improv could improve the way you deal with a crisis.

Friday, October 24, 2008

Cancer Psycho

I recently saw an episode of the TV show, "Desperate Housewives". One of the characters has cancer and has just finished her chemotherapy treatment.

She gets home from the hospital one day and sees that a possum has ruined her garden. She freaks out, buys an air rifle and stands vigil at night, waiting to kill the little critter. When her husband tries to talk her into going back into the house, she screams at him, "This thing has invaded our home! I am NOT going to let it defeat me!" Of course, we all know she's talking about the cancer, not the possum.

This is something I'm not sure everyone surrounding a cancer patient understands. You'd think somebody battling cancer would have bigger things on her mind than a furry animal ruining her garden. But I know exactly why she went pycho about the possum.

I've had similar psycho moments, or moments when I've wanted to scream at somebody. Ants in the house, dishes coming out of the dishwasher with caked-on food still on them, kids running amok with nobody to enforce the rules, and so on. These everyday, seemingly petty things are more disturbing than the big looming threat of death by cancer.

Why? Because cancer is an abstract threat. It's something that I can't really control, so there's no point in throwing a hissy-fit about what those cancer cells are doing inside my body . But making sure my kids are learning to say "please" and "thank you", keeping my house in order so I know where everything is, simply being able to control what goes on under my own roof - these are things that I'm having to let go because I don't have the energy and strength to deal with them most of the time.

I can't drive anymore so I have to depend on the kindness of friends to help me with my errands. Luckily, I have no shortage of friends who are offering all sorts of help so I'm thankful for that at least. But every time I have to ask somebody for a ride to the hospital, every time I see that Toby's teeth or Josie's hair haven't been brushed, every time I see the floor in the kids' room littered with books and clothes with nobody around to reprimand them for it - all of these things are reminders that I'm losing control. I've become a lame-duck mother.

So those of you who are dealing with cancer patients, the next time that patient goes psycho over something that seems petty and meaningless to you, think about the possum.

I can't go after cancer with an air rifle, but I can hunt down a garden pest with one.

Wednesday, October 22, 2008

Hypocrisy and Expectations

I often write in this blog about ways I try to be a better person. I probably make myself out to be some kind of saint from the looks of the comments and feedback I'm getting from you. But the fact is, I fall short of being the generous, open-minded, patient, perfect mother and wife you might think I am from reading my blog.

I think you'd all agree that you, too, believe in being kind-hearted, tolerant, caring, and a walking repository of the values and traits we want our kids to have. But do you always live what you preach? Do you always walk the talk? Of course not. Does that make us all hypocrites?

I knew a guy who was in a position of power and influence. What he said affected the way people made their decisions and lived their lives. To my great disappointment, one day he showed himself to be a weak, spiteful, selfish, and childish character - the direct opposite of the facade he'd been putting on for the people who looked up to him. I wrote him off as a huge hypocrite and felt nothing but contempt and disappointment toward him.

Then I asked myself why I was so disappointed. Was it because I actually expected him to be perfect? Did I really believe he was the pillar of virtues he preached to others? Who was I kidding?

I think when it comes to living the virtues we aspire to in ourselves, we're all hypocrites to a certain extent. Actually, "hypocrite" is the wrong word. I think what we do is set up expectations of ourselves and others. I'd like to be a patient, kind-hearted, forgiving, generous person. I talk about these virtues to my kids and I talk about them in my blog. I try to live them, but I often fail. But then I try the next time. And the next time. I try because I have expectations that I can be the person I want to be.

I think we all have an idea of the kind of person we want to be and we succeed and fail in turns. When we fail to practice what we preach, we're not necessarily being hypocrites. We're falling short of the expectations we've set for ourselves. It's when we start lowering those expectations or stop having expectations altogether that we should start worrying.

Monday, October 20, 2008

Best Mommy Award

The other night, I was tucking Toby and Josie into bed for a second time. I have a routine. I tuck the kids into bed at their bedtime, and then I go back in before I go to bed to tuck them in again, cuddle them, kiss them, and whisper "I love you" to them.

I put my mouth to Josie's ear and whispered the usual promises of love that I always do to Josie and her brother. She usually just turns over in her sleep and that's all. But this time, she turned over and mumbled in her sleep, "You're the best mommy in the world."

I've sometimes imagined what it would feel like to win an Oscar. I'd win one for best original screenplay - a film that would be ground-breaking in its genre and eye-opening in changing the way people think. I imagined I'd walk up on stage in front of all those people and millions of TV viewers and say two words: Thank you. And then just walk off. So terribly cool and minimalist.

But winning an Oscar couldn't possibly feel as good as the Best Mommy Award I got from Josie the other night. And unlike an Oscar, which is bestowed upon the winner by a panel of judges who really mean nothing to the winner personally, my award came from the only person (other than Toby) who's qualified to give it and the only person whose judgement really matters to me.

So I accepted my award and whispered back to Josie, "Thank you."

Friday, October 17, 2008

Chemo Fun

I had the best chemo session ever two days ago.

First, the facts. I had my second cycle of the Avastin + Ixempra combination. Before the treatment, I went over my test results with my doctor. The chest X-ray showed some improvement, with a bit less opacity ("ground glass") in the lungs and a bit less fluid in the lining of the lungs (pleural effusion) than in the previous X-ray of September 22. My tumor markers were better, with two of them going down and one of them increasing by just a little.

Overall, pretty good results - enough to believe this chemo combination is working and we should stay on course. According to my doctor, I've been feeling weak, tired, and breathless lately because my steroid dosage has been lowered, not because my cancer is getting worse. So that's good news.

As for why this last chemo session was the best I've ever had... Tony left work early, picked Josie up from school and brought her over to see me at the chemo clinic. Josie climbed into bed with me and we shared some food together. We made a tent over our heads with the blanket so we could hide under there and tell secrets to each other. I had so much fun just sitting and chatting with her, hugging and snuggling her. It didn't matter that I was hooked up to an oxygen machine and had an IV drip pumping chemo drugs into my body.

We giggled and laughed and told each other stories. It takes so little to make a kid happy. And even less to make that kid's mom happy.

Wednesday, October 15, 2008

Freshman Philosopher

When I was in college (that's university to you non-Americans), I took enough philosophy courses to think I had the world and the people in it all figured out.

I decided there were two types of people in the world:

1) People who were blissfully ignorant of "the truth", whatever that was, and therefore happy.

2) People who were smart enough to see the darkness of mankind and futility of life, and therefore in constant angst.

I'd put the bimbos and dumb jocks in the first category, but there were also just plain happy people who enjoyed a sunny day and smiled when they passed a stranger on the street.

In the second category were people such as Sylvia Plath and other suicidal, psycho-suffering artist types. In college, these were the kids who wore all black, pierced odd body parts, and refused to smile except to mock you for smiling at a sunny day.

Philosophers, artists, poets, and other thinkers throughout history have perpetuated this theme over and over again - that if you truly understood the human condition and our role in the universe, you could not be content. In other words, we're either happy idiots or miserable geniuses.

Now that I'm older, wiser, and have learned to see those artists and thinkers as pessimists who just want company in their misery, I've come up with a third category:

People who are smart enough to see the darkness in the world, get over it, and try to create an oasis of happiness in that darkness.

I think that applies to a lot of things, big and small, in our lives. Your husband forgot your anniversary... again? Get over it. Find something else about him to be happy about. You lost your job? Get over it. Look for another one. Have cancer? Get over it. Find a way to live with it and do the best you can for the people around you.

You don't have to be a happy idiot or a miserable genius. Mix it up a little. Be a happy genius.