Monday, June 30, 2008

Can You Help?

My neighbor has a good family friend whose five-year-old daughter needs a bone marrow transplant to save her life.

Katie Currie was diagnosed with leukemia when she was three years old. She lives in Scotland with her parents and little sister. The local news media where she lives put out an appeal for donors and more than 1,000 people came forward. But none of them was a match.

It's hard to believe there isn't somebody out there in the world who's a match for Katie. We just have to find that person. If you forward this appeal to all the people you know and they, in turn, do the same, we must be able to find a person who can save Katie's life.

A simple blood test is all it takes to find out whether or not you're a match. You can contact your local bone marrow donor program wherever you live, including Singapore, the U.K., and the United States. You can find contact details with a Google search. Call and ask if you can take a blood test to see if you're a match for a little girl in Scotland and see what they can do about coordinating this.

You can watch a short video clip about Katie by clicking HERE.

You can read an article about Katie in The Sunday Mail by clicking HERE.

Imagine if Katie were your daughter or niece. How far would you go to save her life?

P.S. I'm going on a brief holiday with my family today so I won't be posting anything on my blog for the next three days. I'll be back with a frivolous Friday post at the end of the week.

Friday, June 27, 2008

Cancer Humor

I know that cancer is a scary and heavy topic, but I have to live with cancer and I just can't be scared and heavy all the time. I have to laugh, even about cancer. I think a sense of humor helps take the fear and anxiety out of a lot of scary things, as I wrote in a previous blog entry, "Laughing About Death".

I've come across some funny responses to surprising things people say to cancer patients. I thought you might find them funny as well:

- Are you going to live?
- I don't know. Are you?

- Ohmigod! I heard you were sick, but I didn't know you were dying!
- Ohmigod! I heard you were insensitive, but I didn't know you were stupid!

- You need to have a mastectomy? You have such beautiful breasts. What a waste!
- You have a brain. What a waste!

- Well, at least it's just your breasts and not a part of the body you need.
- Is that what they said to you before your lobotomy?

- I had a friend who had chemo and her hair didn't fall out.
- Obviously, she didn't get the good stuff.

- You have to have chemo? I heard chemo's toxic and poisonous and it'll kill you.
- You mean, like the cigarettes and alcohol you can't give up?

- Hey! Your hair's started growing back! Frankly, I thought you looked better bald.
- Thanks. I think you would, too.

Have you heard any good ones you'd like to share?

Thursday, June 26, 2008

My Life As A Gift

A blog reader wrote, "I never appreciated how precious my life was until I had my kids. Do you feel the same?"

Yes, but not in the sense that I suddenly realized after having kids that life was full of happiness, sunshine, and birds chirping outside my window. Instead, this appreciation of preciousness was really a realization that I had the biggest responsibility of my life.

Having a child makes you responsible for that human life. You can't take as many risks as you used to. If you're a journalist, you don't put your hand up for frontline coverage of the war in Iraq. You're less likely to take on life-threatening adventures like sky-diving or climbing Mt. Everest in a snow storm.

Once you have kids, you're no longer responsible for your own life, but for the life of your child's parent. You might be willing to risk killing or maiming yourself, but you can't risk leaving your children motherless or fatherless.

When I was single and childless, I took all sorts of risks with my life, my body, my health. If things went wrong, I alone would suffer the consequences. But now that I have children, I've had to give up being selfish.

I think I really came to appreciate how precious my life was when I was diagnosed with cancer. Not so much because I realized I could cease to exist, but because I realized I was going to take my children's mother away from them.

If I didn't have kids, dying wouldn't be nearly as bad. I've had a good life and 41 years is a long time to enjoy any gift. But depriving my kids of a mother is something entirely different.

So yes, I appreciate much more how precious my life is because I have kids. Life was a precious gift before kids. Now, my life is the most precious gift I can give to my kids.

Wednesday, June 25, 2008

How Happy Are You?

I've just been doing some reading online about serotonin, because somebody I know has been diagnosed with a serotonin deficiency. I found a Web site article that gives a pretty simple, clear explanation of how this chemical works in our bodies. Here's an excerpt that I found particularly interesting:

A group of psychologists did an on-going survey about happiness. When asked to rate their overall level of happiness, on a scale from 1 to 10, most people indicated about 6.7 or so. Interestingly it was discovered that a divorce, or serious injury, even the loss of a limb, caused this level to go down a point or two, for a year or two. But then it usually came back to about 6.7.

Falling in love or winning the lottery caused the level of happiness to go up a point or two for a year or two, but then it went back to the previous level. What this implies is that a slight increase that could be sustained, was more significant than more dramatic life events. In other words if you find small things that make you feel good, and do them on a regular basis, your overall level of happiness is greater than if you fall in love, win the lottery.

I was shocked that most people rated their level of happiness at 6.7. That's a D+! Are people generally this unhappy? I'd rate my happiness level at about 9 or above. And I have terminal cancer! Am I just crazy?

Where would you put your level of happiness on a scale of 1 to 10?

Tuesday, June 24, 2008

If a Tree Falls...

If you're the parent of a toddler or pre-schooler, you know about this behavior in kids. Your kid falls down, but only starts to cry as soon as all the grown-ups rush to her side to ask, "Oh! Are you okay? Poor baby!" Many times, if nobody notices, the kid just gets up and carries on playing.

I remember seeing Josie do this when she was younger. Unless she'd really hurt herself, I ignored her. If she started to cry for attention, I sang her a song I learned as a kid: "Nothing's impossible if you try, and if you fall, you must not cry. Just pick yourself up, dust yourself off, and start all over again." Now, she doesn't bother to cry for sympathy. She's probably sick of hearing that song.

I think we adults sometimes do this as well. We moan and complain and even feel more pain when we think somebody's around to give us sympathy.

I've been reading other cancer blogs that mention all kinds of side effects and pains that I've been lucky enough to escape. But some of these pains I read about make me wonder if I should be complaining too.

Don't worry. I'm not going to start moaning and groaning just because I have an audience. But it made me think. Do we sometimes intensify our own pain when we see it recognized and validated by others? If no one were around to give us sympathy, would we be more likely to just pick ourselves up and get on with it?

I know there's legitimate pain out there that should be treated with medication and counseling. But I wonder if we're too quick these days to believe we have a problem just because mass media and the self-help section at the bookstores tell us we do. If some of our pain, physical and emotional, didn't have a label, an official stamp of recognition, an audience, would we be more willing to deal with it ourselves?

It's a twist on the age-old philosophical question, "If a tree falls in a forest and no one is around to hear it, does it make a sound?" If we fall down and cry and no one is around to hear it, do we really feel pain?

Monday, June 23, 2008

Nutritional Supplements

A blog reader asked, "Could you share with us your choice of supplements and health foods as well as your sources of these?"

When I was first diagnosed with cancer more than two years ago, I saw a naturopath and did some research on vitamins and supplements that were specifically recommended for women with breast cancer or undergoing treatment for cancer. Here are the supplements I'm taking now (Click on the supplement name for information):

Flaxseed oil
Milk Thistle
Vitamin C
Vitamin B6

I get all of my supplements, except for Acidophilus, from the U.S. or Australia because they're much cheaper than they are in Singapore. Be aware that many brands do not contain the dosage that is indicated on the label. And many contain animal products and synthetic fillers.

I don't believe pills are a substitute for food. I wish there were a way for me to get all these nutritious elements in food, but there isn't, so I'm supplementing my diet with vitamins where needed.

As for health foods, I eat a lot of fresh vegetables and fruit, organic when I can. In Singapore, I shop at Super Nature, Tanglin Marketplace, and sometimes order online from Green Circle Farm. Cold Storage also has organic veggies and fruit, but a very limited selection. I eat brown rice, not white. I eat whole grain bread from our local bakery, not supermarket bread and never white bread. I eat some beans and nuts but not as much as I should.

I get hormone-free fresh New Zealand salmon from The Fish Wife. She's a lady in Singapore who pools orders for various salmon products once a month. Her e-mail address is:

I prefer to eat whole, natural foods rather than processed, packaged food. When I do buy packaged food, I read labels. I avoid foods with ingredients I don't recognize or can't pronounce. I avoid preservatives and artificial coloring or flavoring. I also avoid sugar because sugar feeds cancer cells.

In the U.S., I like shopping at Whole Foods, which my brother-in-law calls "Whole Paycheck" because it's pretty expensive. But they have some dry goods I can't get in Singapore, such as organic looseleaf lemongrass and vita mate tea.

If any of you have some good tips on nutritional supplements and good sources for healthy foods, please share!

Friday, June 20, 2008

Popping Pills

My daily schedule is organized around my medications. Upon waking, I take Tykerb, codeine, and Paracetamol. Then I wait an hour, swallow a handful of supplements, eat breakfast, then take Xeloda (Capecitabine), which is my new handy-dandy oral chemo drug. Before lunch, another handful of supplements. Then more codeine. Before dinner, another handful of supplements, followed by another dose of Xeloda after dinner. Then more codeine and Paracetamol. I don't even have much of an appetite these days, but I have to force myself to eat, just so I can take my pills.

My goal each day is to have more real food than pills in my stomach. I'm still under 40 kg (88 lbs.), even though I'm trying to eat more and more each day. I've even added fatty junk food to my diet. I had some fast food at McDonald's recently and immediately felt sick.

Here's a tip for those of you who are trying to lose weight: eat fresh veggies. You just cannot gain weight on a diet of fresh vegetables no matter how much of the stuff you eat. After months of that, eat some fatty junk food. It will make you so sick, you'll go straight back to the veggies.

Speaking of popping pills, here's a funny rant from You Tube. It's a video clip of Bill Maher, an American talk show host, talking about the pharmaceutical companies' hold on consumer health.

Have a good, healthy, pill-less weekend.

Thursday, June 19, 2008

Looking Back at Me

I've kept every letter I've ever received since I was ten years old. I've been going through them recently, putting aside ones for people I'm still in touch with, so I can return them to the senders. It should be amusing for them to read letters they wrote to me ten, twenty years ago. I've also tracked down some of these people from my past and am intrigued and mostly pleased to see how their lives have turned out.

As I'm going through these old letters and finding people from my past, I'm piecing together a life that sometimes seems unfamiliar to me.

People like to say you shouldn't look back; you should leave the past behind. I disagree. I've learned a lot about me from reading these old letters - some of it good, some of it embarrassing. The good, the bad, and the ugly. It's interesting to see the difference between who you think you are and who others think you are. Maybe my kids will read these letters some day to see who their mother was in the eyes of others.

We can create the person we want to be in our imaginations, but our own memories can deceive us. When we see ourselves in the ways we've influenced or touched the people in our lives, then that's more likely to be the person we really are.

Wednesday, June 18, 2008

More to Life Than Cancer

We cancer patients can be self-absorbed and single-minded. Death looming over our heads can really take over our lives. We count on you, our family and friends, not to let it.

I've had friends talk to me about their everyday problems with their spouses, kids, colleagues at work, and then they stop themselves and say, "I shouldn't be complaining about this stuff! This is nothing compared to what you're going through!"

Or they're chit-chatting along about themselves and then suddenly realize they have a dying cancer patient in front of them. "Listen to me going on about this silly stuff! Tell me about you. How do you feel? How's the treatment going? Let's talk about you."

I know there are some cancer patients who want to talk about nothing else or think that whatever anyone else has to say isn't as important as what they, as cancer patients, have to say. But I'm sure they're the minority. And if it weren't cancer, it might be something else that makes their troubles more important than anybody else's. But most cancer patients, including myself, want to hear about what's happening outside of Cancer World.

A bad break-up with a boyfriend might sound trivial compared to a life-and-death struggle with cancer, but we human beings feel what we feel. If the break-up is what's consuming you and keeping you up at night, let's talk about that. It's probably a lot more interesting than the details of my latest test results anyway.

It's true - I could live, eat, and breathe cancer 24/7 if I let myself. Cancer can be as big or as little as I let it be. When I spend an entire day at the hospital getting tests and treatments, cancer takes over the day. But even then, I don't sit waiting for my echocardiogram thinking about cancer. I'm usually thinking about the same mundane things everyone else thinks about while waiting in line at the bank or supermarket.

Yes, cancer is right up there on the list of things worth complaining about. Yes, it probably trumps a family squabble or a bad hair day in terms of seriousness. But that doesn't mean other problems aren't important. Think of it this way. If you want to complain to me about the horrible haircut you have to live with after spending four hours and a week's salary at the hairdresser's, I can comfort myself with the thought that at least I don't have to worry about silly things like haircuts anymore.

Tuesday, June 17, 2008

Sisters With Breast Cancer

My clever sister has told me about a study that is currently being conducted for women whose sisters have breast cancer.

The Sister Study is the only long-term study of women aged 35-74 whose sisters had/have breast cancer. It is a study to learn how environment and genes affect the chances of getting breast cancer, and it's enrolling 50,000 women from various backgrounds to try to find the causes of the disease.

More women from specific groups are still needed to ensure that the study represents all women. They're still looking for women from the following groups that are underrepresented in the study to date:

1) African-Americans, Latinas, Asians and Pacific Islanders, and Native Americans between ages 35-74.

2) Caucasian women between the ages of 65-74 or with a high school degree or less.

Participants need to be U.S. residents, but even people who don't qualify for the study themselves can still help with the recruiting process.

To learn more about this study, go to this Web site:

If you're in the U.S., you can call this number for more information: 1-877-4SISTER (877-474-7837).

My sister lives in the U.S. and is participating in the Sister Study. If you have any questions for her, you can post them as a comment on this blog and I'm sure she'll be happy to answer them.

If you live in the U.S. and have a sister with breast cancer, this is your chance to contribute to the knowledge about breast cancer so that our daughters, nieces, friends' daughters and the next generation of women will have a better chance of preventing or fighting this disease.

Monday, June 16, 2008

Insurance, Cost of Cancer

Question from a blog reader: "In terms of medical insurance and financial matters, what factors/costs should we be prepared for to manage cancer if we get it, or sustain quality of life..."

According to the World Health Organization, one out of three people will get cancer at some point in their lifetime. If somebody in your family is diagnosed with cancer, the last thing you want to think about is money. I have friends who are passing up treatments because they're too expensive. I cancelled a few chemo sessions during my first bout with cancer in order to save some money. Maybe that's why my cancer came back so soon. I doubt it, but who knows? The point is, you don't want to have to make life-and-death decisions based on financial considerations.

Our family had two layers of insurance when I was diagnosed with cancer - Tony's work insurance plus personal insurance. We burned through the annual limits for both within the first few months of treatment. We've probably spent a quarter of a million dollars on my cancer treatment so far.

My last chemo combination cost S$8,000 (US$5,800) every three weeks. That doesn't include all the other medications that go with the chemo, or the doctor and nurses' fees. It doesn't include the scans and tests. A full-body MRI at Mt. Elizabeth Hospital in Singapore costs S$3,766 (US$2,730). A PET/CT scan costs S$4,000 (US$2,900). Then there are the X-rays, liver ultrasounds, echocardiograms, and blood biomarker tests that I get almost monthly.

Cancer is very, very expensive. Spend the money and time now to lower your risk of ever getting cancer. But just in case you do, here's some financial advice based on what we've learned so far:

1) Get personal insurance on top of your work insurance.

2) Check your insurance policies to see what their coverage is for chemotherapy and kidney dialysis. This doesn't mean that you'll ever need either of these, but these are good litmus tests for how good the coverage is. Most insurance policies are just fine covering accidents and minor medical needs, but they're lousy at covering the big-ticket items like terminal illness or chronic illness.

3) Get disability insurance for the primary income earner in your family.

4) Get insurance to cover your family if your child gets cancer and you or your spouse has to quit your job to look after your child.

Friday, June 13, 2008

Substitute Mom Assignments

I was talking to a girlfriend recently about our daughters and about some of the things mothers do with their daughters as they grow up - shopping for their first bras, talking about their periods, telling them about sex, and so on.

Tony's a great father, but he's a man. He's going to struggle with this area of parenthood after I'm gone. My girlfriends are going to have to step in to guide Josie through girl issues like these. Then it occurred to me that each of my girlfriends has a special strength, talent, or area of expertise. One might be better than others for having the sex talk with Josie. Another might be better at taking her bra shopping. Yet another might be better at giving her advice about boyfriends.

So I thought I'd make a list of issues that are usually a mother's job and assign them to my girlfriends. Here are some I've thought of so far:

1) Menstruation - tampons or pads, PMS, period pains
2) Puberty - physical changes, body hair, shaving legs and armpits, bikini waxes, acne, body image
3) Bra shopping - making this fun, not embarrassing
4) Sex - abstinence, contraception, sexually transmitted diseases
5) Boyfriends - recognizing the good guys from the bad, dealing with crushes and break-ups
6) Clothes and shoe shopping - a fun girls' day out
7) Love - share stories
8) Diet and nutrition - very, very important to me since this will be Josie's first line of defense against breast cancer
9) Health - breast self-exams, gynecologist visits
10) Self-protection - dangers facing women, the "date drug", on-line predators
11) Self image - how to be confident and not follow the crowd or depend on other girls' or boys' approval
12) Feminine hygiene - wiping front to back, yeast infections, urinary tract infections

[NB: Josie should know that if she gets a "tramp stamp" (tattoo in the small of the back) she may not be able to get an epidural during childbirth. Not sure which of the above categories this one belongs in.]

If any of you girls want to step forward and volunteer for one or more of these assignments, go ahead. If you think of other mother-daughter issues I've left out, please suggest them.

Thursday, June 12, 2008

Protecting Kids From Cancer

A blog reader asked, "Do you ever wonder if Josie will get the same cancer you have? Do you want her to be tested to see if she has it in her DNA or whatever it is you test to find out, so that she can maybe prevent it from happening?"

I am worried that Josie will get breast cancer some day. Having a first-degree blood relative with breast cancer greatly increases your risk. But I have no history of breast cancer in my family, and only a few distant relatives with any kind of cancer at all. Only five to ten percent of all cancers are hereditary anyway.

When you hear about somebody getting cancer and learn that several of their relatives also had cancer, you probably assume that it's in the family genes. You're probably wrong. According to the World Health Organization, one out of three people will get cancer at some point in their lives. One out of three. So mathematically, the chances of having multiple family members with cancer are very high, regardless of whether cancer is hereditary in your family. It's statistical frequency, not family genes.

But I'm very cautious when it comes to my kids, so I've had genetic testing done for the breast cancer genes, BRCA 1 and BRCA 2. The results? BRCA 1: "no mutation detected". BRCA 2: "genetic variant of uncertain significance". As far is this test is able to tell, my cancer is not, in fact, hereditary. So there's no point in getting Josie tested right now. When she gets older, there may be more advanced genetic testing that could show something that today's tests don't, so she might want to get tested later on.

There have been several studies in Korea on the breast cancer genes. It turns out that Korean women under 40 years of age have a much higher incidence of the BRCA 1 and BRCA 2 gene mutations than their Western counterparts. But the incidence of breast cancer among Korean women is much lower. That suggests that even if you do have the cancer genes, other factors (most likely diet) can prevent those genes from ever manifesting themselves as cancer.

I'm just talking about breast cancer because that's the scope of my knowledge. There may be tests for other cancers that can predict whether or not you'll have the same cancer as your parents. If you're really worried, talk to a genetic counselor. But I think the best thing to do is maintain a healthy diet and lifestyle. As the Korean studies suggest, you can probably suppress cancer genes with diet.

Read The China Study by T. Colin Campbell. This scientist did a number of studies showing that diet plays a bigger role in cancer than even carcinogens. He injected carcinogens into lab animals to give them liver cancer. Then he played around with the amount of animal protein in their diets. He found that the more animal protein these lab rats ate, the more their tumors grew. When he stopped feeding them animal protein, their tumors shrank.

This book covers thousands of studies conducted over more than two decades, all leading to the same conclusion: you can greatly reduce your risk for cancer, heart disease, and other "diseases of affluence" by adopting a whole grain, plant-based diet.

If you're worried about you or your kids getting cancer some day, here are some things you can do or tell your kids to do:

1) Don't smoke (smoking increases risk of all cancers, not just lung).
2) Don't drink alcohol.
3) Eat vegan.
4) Eat whole foods in their natural state - not packaged, processed, or fried.
5) Maintain a healthy weight (obese people have a far higher risk of cancer).
6) Minimize your exposure to chemicals known to be or suspected of being carcinogenic. Here's a list compiled by the International Agency for Research on Cancer.

I'm doing what I can now to minimize Josie's and Toby's risks for cancer, by instilling in them healthy eating habits to set them up for life. But after I'm gone, I won't be able to watch what they're putting into their bodies. I'll have to trust Tony, my extended family, and my friends to do what I would do to protect them from cancer as they grow up.

Wednesday, June 11, 2008

Good-Bye Max, And Thank You

I just got the news that Max has died. Max is the little boy who came to Singapore from Ukraine to get treatment for stomach cancer. I wrote about him in an earlier blog post, Special Request, and asked for your help to raise money for his treatment. Word got out and people donated tens of thousands of dollars to Max's family to pay his medical bills and give them hope.

We could be cynical now and say that all that money wasn't enough to save him and despite our efforts and those of his family and his doctors, Max died anyway. We could be despondent and say it was all just wasted hope.

I'd have to disagree. I believe that the money you all donated gave Max and his family more time with each other than they would have had otherwise. I believe your donations and the words of support you sent out to them strengthened their faith in the goodness of people. And I don't think it was wasted hope. Hope is in itself a gift of positive strength, regardless of the outcome.

Here are some things I've learned that I hope you've also learned:

1) People are capable of extreme, irrational kindness toward complete strangers. Most of you didn't know Max or his family. You just heard about him through the e-mail grapevine, but you donated money to save this little boy's life anyway. I knew from the very beginning that the money would be found. I wasn't at all worried about that. I had complete faith that you weren't going to let Max die because of money. You proved me right and my own faith in people has been strengthened. I hope yours has as well.

2) People, even young children, are capable of immense strength of spirit, even as their bodies break down. I didn't get to meet Max in person while he was here. It seemed our chemo schedules worked against us and when he was feeling well, I was sick and vice versa. But I've seen photos and videos of him and heard stories about him. From these, I saw a brave, cheerful kid who managed to smile and make other people smile, even as he was suffering the immense pain and discomfort of cancer and its treatments.

3) People can live through terrible tragedies and not only refuse to be crushed by them, but draw strength from them to help others in similar situations. I've been amazed at the time, effort, and heart that Sean and Helena Wren have devoted to Max and his family. Sean and Helena lost their own daughter, Jazzy, to brain cancer when she was just three years old. They didn't know Max's parents when all this started. They just heard about a mother seeking treatment for her son with cancer, and they took it upon themselves to help Max and his mother. Thanks to Sean and Helena, Max and his family received not just money to pay for treatment, but a great deal more that money can't buy.

I'll remember Max and his smile and the lessons he taught us. I hope his family realize how they've touched a bunch of people who have never even met them. I hope the strength and love that supported Max over the past few months will help support them now. I thank Max and his family for the brief glimpse I had of them.

Chemo Update

We've changed drugs again. This is chemo drug regimen number eight this year. The new drugs are Xeloda (Capecitabine) + Herceptin + Tykerb. No more Doxil (Liposomal Adriamycin) because my doctor is worried about damage to my heart.

Yesterday's echocardiogram showed a decrease in my heart pumping function. This is measured by the "ejection fraction" which has fallen to 54 percent from 65 percent. I'm still within the normal range, but the fall suggests that the Adriamycin-Herceptin combo is damaging my heart. This is one of the side effects of this particular drug combination that can be fatal, so we're not taking any chances.

Yesterday's liver ultrasound was unclear because the doctor didn't compare this latest scan with the previous one. But based on the films alone, it looks like the tumors are still there, but the color has changed. In the previous scan in May, the tumors looked about the same color as the rest of the liver. In yesterday's scan, the tumors have a dark center with a ring around the outside. My doctor thinks the dark center shows tumor necrosis - dead cancer cells. She says dead cells are liquid, which turn up dark on ultrasounds. So her guess is that the last chemo was killing the cancer cells in the liver tumors.

She also said that ultrasounds may no longer be an effective way to measure the progression of disease in my liver. Targetted therapies like Herceptin and Tykerb kill cancer cells differently than chemotherapy drugs, so it's hard to tell from an ultrasound what's happening to the tumors. She said we could do a CT later on, but that might not show much either since liquid (dead cancer cells) takes up more volume than a solid mass. That's why a tumor can look bigger on a CT scan even when the cancer cells are dying.

Yesterday's chest X-ray showed some improvement in the lungs. But my cough came back a week ago and has gotten steadily worse, so I've increased my codeine dosage.

The main side effect I need to watch out for with the Xeloda is Hand-Foot Syndrome. If I have a mild case, I'll have tingling, burning, swelling on the hands and feet. If I have a serious case, I'll have blisters and sores on my palms and on the soles of my feet. And if I'm really unlucky, the skin on my palms and soles will peel off, so I won't be able to walk or touch anything with my hands.

I had my three-weekly dose of Herceptin by IV today. Tomorrow, I'll start on the Xeloda (oral) and continue with the Tykerb (oral). In three weeks, I'll have another round of scans (echocardiogram, chest X-ray, liver ultrasound) before my next dose of Herceptin.

Tuesday, June 10, 2008

How to Get Fat Without Killing Myself

A blog reader wrote, "How can we fatten you? If you have a recipe, hand it over to me. I'll cook for you."

A number of people who've seen me lately have been surprised at how much weight I've lost. My normal weight is 45 kg. (99 lbs.). Earlier this year, my weight dropped to 38 kg. (84 lbs.).

A blog reader told me about a condition called "cachexia", weight loss from cancer. It appears cancer can change your metabolism so that your body can't absorb the nutrition you need from food. That, combined with the loss of appetite, mouth ulcers, and other side effects of cancer and chemo, lead to the patient literally wasting away. I've read that about half of all cancer patients who eventually die, do so from cachexia. We don't hear about it because we're told that the patient died of cancer. We usually don't get the medical details of the precise cause of death.

I've tried to regain the weight I lost. I've scrapped the cancer diet I was on for two years and went back to eating meat, dairy, eggs, and sugar. But I'm still not getting my weight back. I'm eating so much fatty junk food that I'm sure I'm feeding the cancer cells.

I'd like to gain weight without compromising my health. The best way would be a raw food diet, but that's too hard. I love soup, pasta, rice, noodles, cooked veggies, comfort food. I try to eat at least one raw meal a day (salad), plus two veggie-fruit smoothies a day. This is when I eat at home. When I go out, I'll eat anything, the fattier the better.

Ideally, I'd like to eat a sugar-free, vegan diet (no animal products, including meat, dairy, eggs). If you know of good vegan recipes that can fatten me up, I'd love to know about them. If you feel like cooking them for me, I'd love that even more. In fact, that's the best gift anybody could give me right now.

Eating healthy is extremely time-consuming and labor-intensive. No wonder most of us don't bother. But when it comes to life-and-death, it might be necessary to invest the time. I don't know whether it's life-and-death for me yet, but if and when this chemo stops working and we've run out of medical options, I'll have nothing else to turn to.

Monday, June 9, 2008

Kids' Cancer Questions

Question from a blog reader: "Has Josie asked you why you are sick and her friends' mummies are not? Actually, I'd like to know her questions and how you have answered them."

She hasn't asked me why I have cancer and other mothers don't, but she's asked me why my doctors can't get rid of my cancer when other people's doctors have gotten rid of theirs. I told her that some cancers are harder to cure than others, and I have the kind that's really tough to get rid of. I said my doctors are trying their best and they'll keep trying.

I talked about some of Josie's questions in a previous blog post titled, "Talking to Kids About Death". I've also mentioned bits and pieces of conversations I've had with Josie about cancer and death in a number of other blog posts. You can type in "Josie" in the Search Blog field at the top of your screen and every entry I've written with her name in it will come up.

Here are some of the questions she's asked me more recently, with my answers:

1) Do people really die from cancer?
Some people do, but a lot of people don't. I've had cancer for over two years now and I'm not dead yet.

2) Do you want to die?
Of course I don't want to die. I would never want to leave you and Toby. If it were up to me, I'd stay with you forever. If I die, it won't be by my own choice. Remember that if I die - it was not my choice to leave you.

3) Can I catch cancer?
No. Cancer is not like a cold or infection that you can get from somebody else. Nobody can get cancer from somebody else. So I can still hug you and kiss you all I want and you can't get my cancer from me.

Some of my answers are not entirely correct. For example, some cancers such as cervical and liver cancer, you can "catch" from other people in the form of the Human Papilloma Virus (via sexual contact) or Hepatitis B and C viruses (via infected blood). But technically, you don't actually catch the cancer; you get the virus that can lead to cancer. This is more information than a five-year-old needs, so I've just given her the simple answers for now.

If your kids have questions that they'd like to ask me, I'd be happy to answer them. Kids sometimes come up with good questions.

Saturday, June 7, 2008

How to Pray: Advice From a Non-Christian

My friend's three-year-old daughter who was recently diagnosed with leukemia, has started her eight-month course of chemotherapy.

Josie and I say a prayer for this little girl, her older sister, and her parents every night now. I'm not religious, but I encourage Josie to say prayers when there's something worth praying about. This is the first time we've prayed for anything in particular. All our prayers before consisted of "Thank you for..." followed by a catalogue of our family and friends.

A few nights ago, after we said our prayer for our friend with cancer, Josie added, "And the same for Mommy, too." We never prayed for me before that. I wonder why. I guess I wanted Josie to think about praying as a way to thank God or the universe for the people in her life, not to ask for favors. I've always been put off by people praying for things like a new car, a new job, or other self-serving wish lists.

People pray for the darnedest things - for their kids to get into a good university, for revenge on their cheating spouses, for a baby boy instead of a baby girl, for the value of their property to go up. Do people really think God should be spending time on this stuff when there are children dying of starvation, women being raped and abused, men killing each other on a daily basis?

After church one day, we drove home and found the perfect parking spot right in front of our building. That never happens. My father exclaimed, "Ah! God saved us a parking space!" I laughed, "I hope God has better things to do than find us a parking space." He chuckled as well when he realized how silly he sounded.

I say let's not crowd the prayer airwaves with silly, selfish requests. Let's save prayers for the really important stuff. Maybe that'll help us see what the really important stuff is.

Thursday, June 5, 2008


A blog reader asked, "You mentioned in this post that you're counting on there being no afterlife. Given that, do you ever find yourself envisioning yourself in an 'afterlife' (such as heaven), especially as it relates to your children (i.e., 'watching' over them)?"

This blog is a written record of my thoughts that I'm leaving behind for my children. I'd like to be able to tell them that their mother will indeed be somewhere out there, watching over them for all eternity. But I'd be lying. It's not so much that I don't believe there's an afterlife; I just feel better believing that there isn't.

Most people are reassured by the idea of an afterlife. I find it unnerving. I don't want there to be an afterlife for two reasons:

1) It's the "undiscovered country from whose bourn no traveller returns". Nobody knows for sure what's out there. It could be heaven, it could be hell. It could be somebody else's idea of heaven but my idea of hell. The fact is, we just don't know. In the absence of definite knowledge of what's lying in wait for me in the afterlife, I'd rather there weren't an afterlife at all.

2) I find the idea of eternity boring and scary. I can't think of anything I'd like to do or be for eternity. Life is precious because it's finite. Love is sweet because it's elusive. Happiness is prized because it's not guaranteed. Take away the limits that put life and its pleasures into focus, and you end up with everything you ever wanted and nothing to live for. What kind of existence, on Earth or elsewhere, is that?

But I'd like my children to feel that I'm around for them, even after I'm dead. And I will be. Not from heaven or from some afterlife, whatever form it takes. I'll be in their lives as long as their hearts and minds can hold me.

I've told them that if they ever miss me, they can look up at the night sky and see me as one of the stars. I've told them I'll always be in their hearts. These images might be good enough for them while they're young. But as they get older and can think beyond the metaphors, I hope they'll understand that I'll be with them, watching over them and loving them in the same way I am now when I'm not in their physical presence.

Wednesday, June 4, 2008

My Wish for My Family

Question from a blog reader: "What is your greatest wish for Tony and the kids in the future, if you are no longer with them?"

This sounds like it could be a trick question, like asking your husband or boyfriend, "Do these pants make my butt look fat?" If he says no, you'll accuse him of lying and flattering you to caress your ego. If he says yes, you'll have to kill him.

I can say I want Tony and the kids to forget all about me so they don't have to feel any sorrow and go on to have a wonderful life. But that would just be lying so I can flatter myself about my magnanimous heart.

Or I can say I want Tony and the kids to never forget about me and continue to celebrate and think about me on my birthday, Valentine's Day, Mother's Day, Christmas, and Labor Day (Isn't that about women in labor?). But that would be killing the magnanimous feeling in me.

In the beginning days of my life with cancer, I said that I didn't mind if Tony remarried after I was dead, but my kids were never, ever to call their stepmother, "Mom". I insisted that they only had one mother, dead or alive, and no other woman was going to steal that title from me just because she had the competitive advantage of being alive.

I've since gotten over that. If the kids need to have a living mother and need to call her "mom", then that's what I want, too.

I'd like Tony to find love again. I'd like Josie and Toby to have a mother who can give them the things that a dead mother can't.

In short, my greatest wish for Tony and the kids after I'm dead is that they have whatever they need to be happy. Whether that means forgetting me or clinging to the memory of me is up to them.

Tuesday, June 3, 2008

How to Spend Time

Question from a blog reader: "What do you think is the best way to spend the time we have left, regardless of how long that might be?"

This is such a tricky question, and I suspect many people who try to answer it aren't telling the truth.

Popular answer: Spend your time doing what you want to do, not what society or your family expect you to do. Follow your dreams; don't let anything get in the way of your dreams.

I think that's unrealistic and selfish. For example, I think we should all strive to find a job that will make us feel fulfilled and happy, but that's just not possible sometimes. Most of us have to work jobs that make us miserable because we have to pay the bills. But that doesn't mean we should give up trying to find fulfillment in our work days in whatever ways we can.

We may not want to spend time with our relatives or go to a friend's kid's birthday party, but we do these things because that's what we do for people we care about. You may have dreams about climbing Mount Everest or finding the cure for cancer, but that might mean risking dying on a mountain and making your kids motherless or spending every waking hour in the lab and not being around for your kids and husband.

I have a hard time with this question because I still don't know. The real rub for me is the bit about "regardless of how long that might be". If I had two months to live, I'd spend my time very differently than if I had two years to live. I've gone back and forth from thinking I have two months to two years, and even many, many years.

So for a few weeks, I'm full-speed ahead with the journals for the kids, making videos for them, collecting keepsakes for their "memory boxes". Then I get lulled into thinking that my remaining life might be measured in years instead of months and I spend my days doing everyday things. And this, knowing that if I suddenly realized I had a few months left, I'd be struggling to do everything I wanted to for the kids.

It's like leaving a term paper until the last minute. I always did that in college. I'd have a month to write a paper, and I'd leave it till the night before and stay up all night writing in a desperate hurry and end up handing in something I wasn't happy with. I've even passed in papers with written apologies to the professors for turning in something that wasn't my best. I'm not sure I can get away with that now. My kids might not give me good grades for motherhood if I don't spend more time on my final assignment.

I guess it's a matter of two extremes: Live every day as if it were my last (just plain silly), or expect to have a normal life span, no matter what the medical evidence says. My answer is to find something in the middle. That, or go back and forth like I have been.

My recent decision to write regularly in my blog is one way to prepare for my death. I'm leaving behind a written record of my thoughts for my kids to read after I'm gone. It's also a way for me to learn something about myself and others, and for others to learn something about me. It's my last assignment as a student and my last lesson as a teacher.

Maybe the answer to the question of how to spend whatever time we have left is... spend it in way that won't leave you with too many regrets on your last day.

When you're on your deathbed, I doubt you'll be thinking, "I'm so glad I finished that presentation that got me my promotion and made me lots of money, even if it meant I had to miss my daughter's most important piano recital." But you might be thinking, "I'm glad I made it to her last piano recital after all these years of missing it. The look on her face when she spotted me in the audience was priceless. She'll remember that night long after I'm gone, and, I hope, forget all those years that I let her down."

Monday, June 2, 2008

Advice From a Dead Mother

Since I probably won't be alive to watch my kids grow up, I've been writing to them in their journals about some of the things I'd talk to them about if I were alive.

There's a lot of advice out there about the sort of things a dying mother should write to her kids. The "Mummy Diaries" is a TV series from the U.K. that tells the stories of five families with mothers who are dying. You can see the three-part program by clicking HERE.

I don't agree with some of the suggestions in this program and in many books and articles about this topic. One thing they say I should do is leave a book of advice for the kids with headings by topic such as "sex", "drugs", "marriage", etc. I'm supposed to tell the kids when to have sex, to drink or not to drink, what to study in school, how to get along with their spouses, how to discipline their own children, and so on.

I'm not doing this. I don't want to micro-manage my kids' lives from the grave. I think it's bad enough to be nagged at by a mother who's alive, I certainly don't want to nag them from the grave. And just think of the guilt they'd feel if they didn't do what I asked them to do. I don't want them to feel like I'd be disappointed because they didn't choose the job, lifestyle, religion, or partner I would've wanted for them.

A lot of people say I should leave behind letters for them to mark the important events in their lives. So when Josie gets married, she can open a letter from me saying I'm sorry I couldn't be there on her wedding day, how happy I am that she's found a man who loves her and deserves her, and maybe some advice about how to have a happy marriage thrown in for good measure.

Or a letter with mother-to-daughter advice that she can open when she's pregnant with her first baby. Or letters for when Josie and Toby graduate from college or get their first jobs or other big life events.

I'm not doing this either. What if Josie and Toby don't get married? What if they decide not to have children or maybe even can't have children? What if they decide not to go to college? Will they feel like failures in their dead mother's eyes because they didn't follow the script?

Instead of telling my kids how to live their lives, I'm using the journals and videos I'm leaving behind to tell them about their mother. I'm telling them stories about me so they can feel like they know me, even after I'm gone.

I'm telling them about how I met their Dad and how I fell in love with him. From this, Toby might get some good tips on what women find attractive in men, or Josie might get some good tips on how to know when you've found the man you'll love for life. I'm telling them about the times I thought I might have fallen out of love with their Dad. From this, Josie and Toby might be able to learn other things about love and commitment and the reality of relationships.

I'm telling them about some of the things I've done in my life that I'm proud of and some things I'm not so proud of. I'm telling them about things I wish I could do differently and why. From this, they'll see that I wasn't perfect and maybe they won't feel so bad when they, too, make mistakes. Better yet, maybe they'll avoid making the same mistakes.

I'm telling them about my views on religion, social responsibility, environmental conservation, philanthropy, self-reliance, and many other issues I have strong opinions about. From this, they'll see what was important to me and how I felt about such issues.

But I won't tell them they have to think or live as I did. I won't tell them they have to agree with me or be like me. I'll simply tell them about me so they can know me.

Some of you will say it's my responsibility as a mother to guide them through life by giving them advice or at least some sort of framework for what I expect from them. I don't think I need to leave behind an instruction manual to do that.

I have faith that if I leave behind my stories and thoughts, that will be enough guidance from me. I have faith that Tony will raise my children to be the people we'd both be proud of. I have faith in our circle of friends and our extended families to tell my kids about me and what I valued.

I have faith that Josie and Toby will have more of a mother after I'm gone than some people with living mothers have.