Good News/Bad News

The good news is, the chemo’s working again. The bad news is, that means the tumors were growing again. In fact, they must’ve started growing again as soon as my last cycle of chemo was over on November 28.

When I told my oncologist today that the pain had subsided since I went back on chemo two days ago, she said it was “worrisome”. I guess she was hoping that the chemo would have no effect on the pain, so there would still be hope that the pain was NOT due to tumors growing again but to some other cause.

My doctor says maybe my chemo (Navelbine) and Herceptin work synergistically so that Herceptin alone isn’t enough to keep the cancer cells at bay; I need to have the two together. She says she’s had many patients with these two drugs but has never seen tumors grow back so quickly as soon as the chemo stopped. She consulted with a colleague who said the same.

This means I need to be on chemo continuously, along with the Herceptin, because as soon as I go off it, the tumors grow again.

So now I stay on Navelbine + Herceptin until my cancer cells become resistant and the Navelbine no longer works. When that happens, I move on to another chemo drug. My doctor says there are only two side effects from being on Navelbine long-term: 1) cancer cells become resistant, 2) sensory neuropathy. Sensory neuropathy is nerve damage to extremities, so it causes a tingling sensation and sometimes pain in the fingers and toes, hands, and feet. My doctor says this damage is usually reversible after a year or two.

The real worry here is that my cancer cells are growing faster than my oncologist, her colleague, and my surgeon (whom I also consulted) have ever seen in all their years of practice. So I might not last the average two years of survival for metastatic breast cancer patients. It’s not looking good, but I’m holding out hope that something will happen in the world of cancer research before my time runs out.

Meanwhile, I need to plan my days more wisely. And I think I’m extremely lucky that I’m still able-bodied and functioning as normal. I’m really going to appreciate this while I still can.

Back on Chemo

Since my last Blog entry, I’ve been to see my oncologist twice. The first time, she was perplexed and didn’t know what to do, so she just said to wait a few days and see what happens with the pain. Today, she was even more perplexed because the pain had gotten much worse. I can’t even turn my body around to reverse the car into our parking space without feeling a shooting pain in my right chest. I couldn’t go for a run tonight because the up and down motion made my chest hurt. I can’t pick up the kids or reach for the top shelf without pain.

My doctor said that in twenty years of treating cancer patients, she’s never seen a case where cancer has come back so quickly and tumors have grown so fast. I told her I must be really special. I got a laugh out of her anyway.

She said she could run some tests – blood test, CT scan, X-ray, MRI, anything but PET/CT, since I just had one last month and it’s too dangerous to have another so soon. The problem is that none of these other tests picked up my cancer before, so she didn’t think they’d show anything. She suggested a “low-dose spiral CT scan”, which has a much lower dose of radiation than a PET/CT. But then she called the radiologist and learned that the radiation level is about the equivalent of thirty chest X-rays. Doesn’t sound low-dose to me! I don’t want to be outshining the Christmas trees this season with all the radiation in my body.

She said my symptoms were a much better indication of what’s happening inside me than any of these tests, so based on my case history, she decided I should go back on chemo. So I had Navelbine again, along with the Herceptin I was scheduled to get. She sent me down to a heart doctor for an echocardiogram first, to see if my heart could take it. The echo was normal. Yay, my heart’s still good.

I go back to the doctor in two days to report on whether the pain has disappeared. If so, then the chemo’s working. If not, the chemo’s not working or it’s not even tumors we’re dealing with. So then we do the low-dose spiral CT scan, which won’t be conclusive because it could show up nothing even though I have tumors growing. And then what?

All this two days before I’m supposed to get on an 18-hour flight. I certainly don’t want to die in an airplane, thousands of feet in the air. If I have a medical emergency during the flight, do they divert the flight to get me to a doctor or are they not allowed to change their flight path even to save a passenger’s life? Maybe I should look into the airline’s policy on this before getting on the flight.

Maybe I should pretend this is happening to my twin in a parallel universe and I should just live in my universe and worry about real things like getting Christmas presents ready and packing for our trip to the U.S.

Couldn’t cancer take some time off this holiday season?

Chest Pains Again

For the past several days, I've been feeling pain on my right side, similar to the pains I'd felt in December last year, which turned out to be a recurrence. A dull, thick-ish pain deep in the right side of the chest (the lung?), plus stiffness and tightness around the entire right chest and arm area. When I breathe in, the pain gets worse and feels a bit sharp and piercing. Before, we attributed the pain to nerve damage from radiation, only to find out from the PET/CT scan in August that it was a recurrence of cancer. This is why I’m so worried. I think the tumors are growing again.

On the one hand, I can't believe the cancer could've come back so soon after my last chemo session on Nov. 28. On the other hand, everyone, especially my oncologist, was surprised and alarmed when we learned I'd had a recurrence so soon after my treatment ended last time. So these cancer cells might be incredibly aggressive and/or... we just ended my chemo as my cancer cells were developing resistance to it so that the chemo isn't really working anymore anyway.

Tony thinks I should get another PET/CT scan now before we leave for the U.S. next Monday. But I've already had two PET/CTs this year. These things are dangerous. I could wait until the four months my doctor recommended comes up, but if this is another recurrence, the cancer would've spread a lot by then.

I could just get a chest X-Ray, but I had a chest X-Ray and CT scan last December when the pains started and they didn't pick up anything wrong.

The sister of a lady I know just died of metastatic breast cancer last week. She'd had Stage II cancer a few years ago and had a recurrence earlier this year. She carried on working full-time, and when my friend saw her several weeks ago, the lady was looking very, very fit and healthy. And two weeks later, she was gone. Just like that. That could be me. I'm looking and feeling fit and healthy now, but like her, I could rapidly deteriorate in two weeks' time and be gone, just like that.

So there's a bit of me that's panicking, thinking about all the things I need to get done. I need to start writing letters to the kids. Is now the time to do that? I've got so much to do before we leave for the U.S., I can't even think straight! And if my condition deteriorates as quickly as that lady, I’ve got no chance of getting ready because I’d be spending my last two weeks in and out of consciousness. For the last few days, she was in a coma. Imagine that. Going from fit and running around town doing Christmas shopping one day, to lying in a coma less than two weeks later.

I’m going to see the doctor now. This is getting a bit scary. I suppose now’s the time to be brave.

Deja Vu

Exactly two years ago today, I found out I had cancer and that very same night, I went to my daughter’s school Christmas concert. I was filming the concert so that I could make a DVD to give out to all the other families.

I remember being focused on getting good shots of the kids on stage and making sure the angle was right. I remember trying to push the idea of cancer out of my mind and concentrate instead on all the cute children in their costumes. I remember at one point, amid all the hustle and bustle and din of excited kids, I felt like the scene around me was something I had to say good-bye to soon, so I was savoring it and felt like crying about it at the same time.

It just so happens that this year’s Christmas concert also fell on December 7. Tonight, it was my son’s Christmas concert instead of my daughter’s. Again, I filmed it for the school. But on this night, the second anniversary of my cancer diagnosis, I didn’t think about cancer or having to say good-bye.

In some ways, I feel like I’ve come a long way. Scans, chemo, surgery, radiation, more scans, more chemo, more surgery. And I’ve gained a great deal of knowledge about cancer and nutrition.

In some ways, I feel like I haven’t moved at all. I have cancer again. So that hasn’t changed. I still haven’t done all the things I wanted to do. I feel like I haven’t done enough with the two years I’ve just had, and my time’s running out.

And just this week, someone else died of breast cancer. She was fit, active, working full-time up until two weeks before she died. It all happened so fast that her family hardly had time to process what happened.

It makes me wonder if I should be doing more to prepare my family and friends. Are they ready to see me go in two weeks’ time? What about me? Would I be ready to go in two weeks’ time if it came to that?

In a way, dying of cancer has its advantages over dying suddenly of a heart attack or car accident. I have time to get ready and say my good-byes.

On the other hand, having that time can be agonizing. Sometimes, I just don’t know how to spend the time.

Chemo Catch-22

A friend of mine went to a chemo session with me last week and had some questions about my treatment. I thought I’d post it on my Blog because several other people have asked me similar questions. I though this would be of special interest to my fellow breast cancer patients.

Question: When you did your last MRI they said that a lot of the tumors had either disappeared or got smaller, so after your last chemo treatment, why do you have to wait 4 months to have another MRI? Is the chemo so long-living that it will take up to 4 months to take effect? Why can't you have your MRI in say, 1 month after today or 6 weeks after, then you'll see that there are only tiny little dots left, (if any) and then blast them again with a day's chemo? I don't understand the delay. Is it because you are having the Herceptin? But the Herceptin doesn't blast the cells, only acts as a buffer, right? So surely it would be best to eliminate all those cancer cells for good, then have the Herceptin, when you know they have gone, because otherwise the cancer cells can replicate and you won't even know. I'm confused. Why don't they do the scan sooner than 4 months?

Answer: I’m getting the MRI for the brain only and the PET/CT for the entire body. The MRI just shows the anatomical, physical view. A PET/CT scan shows a metabolic view. That means an MRI shows what’s there, e.g. an abnormal growth, while a PET/CT scan shows what’s happening, e.g. cancer cells feasting on sugar and rapidly growing and multiplying. So a PET/CT scan can show more than an MRI. It can pick up abnormal cell growth before the cells become large enough to become a visible tumor.

But even then, the PET/CT won’t pick up anything smaller than a pea. No scan can pick up microscopic disease. This is why doctors never say a patient is “cured” of cancer. They say there is “no evidence of disease”, or N.E.D. There is no way to tell if you’ve eliminated the cells for good. Ever. Cancer cells can lie dormant for years and years and one day, the right set of conditions will come together and those cells will become active again. This is why diet, exercise, and avoiding toxic chemicals in the environment are so important. You can never know what will trigger cancer cells to reactivate. What we DO know, however, is that many of the foods we eat and the chemicals we expose our bodies to provide stimuli for cancer cells to grow.

I still need to get an MRI of the brain, however, because for some reason, PET/CT scans miss some brain tumors while MRIs pick them up. I haven’t found a satisfactory explanation of why this is, so if any of you find one, let me know.

They can't do the PET/CT scan so regularly because it's radioactive. To do the scan, they inject a radioactive glucose solution into my veins. Too much of that and I'll develop MORE cancer. It's a real Catch-22. I need to have these radioactive scans to help me fight cancer, but these scans in turn give me MORE cancer. We have to weigh the risk of more cancer against the risk of dying of the cancer I already have.

I can't have non-stop chemo because then the chemo would kill me. We need to give my body a chance to recover from the chemo before we zap the cancer (and healthy) cells with more chemo. Another Catch-22. The chemo that can extend my life can also kill me. You see why oncologists have such a hard job? They have to find just the right chemo to save the patient without killing him. In fact, some people believe that cancer patients die from the treatment, rather than the cancer. There’s no way to prove it one way or the other.

Herceptin works in two ways: 1) It slows down or stops my particular kind of breast cancer cell (HER2+) from growing, 2) It tells my immune system to target my HER2+ cells. So Herceptin doesn’t directly kill the cancer cells the way chemotherapy does. But unlike chemotherapy, Herceptin is fairly targeted so it doesn’t damage my healthy cells as much as chemotherapy does. That’s why I can and will be on Herceptin for the rest of my life.

Thanks for asking the question. Please ask more questions, about anything at all.

Marathon Madness

My brother-in-law, David, just finished his first marathon in 4 hours and 16 seconds. I’m so impressed with him. My friend, Hugh, just finished his first marathon in 5 hours and 15 minutes. I’m equally impressed with him. David’s fretting about those 16 seconds. Hugh’s fretting about not coming in under his target time. To me, the time has nothing to do with why I’m so impressed with these guys or anyone else who runs a marathon.

I’ve always admired endurance athletes. Not for their skill or physical strength, but for their mental strength and discipline. We’re all born with the bodies that we’re given and we can train and exercise to shape those bodies into what we want. But there’s a point where the body lets us down (in my case, with cancer). That’s when the mind and heart take over.

If you ever need evidence of the strength of the human spirit, willpower and determination, go stand near the finish line of a marathon.

I watched the marathon runners come in yesterday. Some were sprinting with their last ounce of strength (after four straight hours of running!). Some were hobbling or limping toward the finish line, fighting leg cramps or muscle breakdown. One man was bleeding from the face and arm, but still jogging along. Another guy was pushing his partner in a wheelchair and as we cheered them on, the woman in the wheelchair took a deep breath and brought her arms down on those wheels to “sprint” toward the finish. I saw little old ladies and men who looked like they were in their 50s and 60s – some so thin that I couldn’t believe they could even stand on their stick legs, let alone run 42 kilometers with them. I saw overweight runners who looked like they were carrying sacks of potatoes around their waistlines. And all this in 32 degree heat and 80 percent humidity.

I was so amazed and awed by these runners and what it took for them to get that far, I decided then and there that I would try to run a full marathon next year. I don’t care how long it takes me (although I hope I finish before the street barricades come down); I just want to finish it. I’ll walk, jog, run, hobble, crawl probably, but I’ll finish it. I’ve always wanted to finish a marathon before I die, so I’m going to do it before I’m no longer able-bodied.

I know that long-distance running is NOT good for the body. It's a completely unhealthy thing to run marathon distance all in one go. I've seen an X-ray view of what happens to the body during a run – it’s incredibly violent force we put on our joints. And for 42 kilometers!

And contrary to popular opinion, it's not good for the heart either. The human heart isn't meant to beat at such a fast rate for such a sustained period of time. Remember the heart surgeon/veteran marathon runner who died during the New York City marathon several years ago? He had a heart attack! And those who died in the Chicago marathon this year – they blamed it on the 32 degree heat. Well, it’s 32 degrees in Singapore every day! And the Olympic marathon runner who just died a few weeks ago – he was only 28 years old!

So no, it’s not healthy. But I’m going to do it because I want to prove to myself that I can overcome my physical shortcomings with my mental strength. I won’t be stupid about it, though. I’ll train all year and be prepared. I’m not going to beat cancer just to die from running a marathon. That would be silly.

Race Day

I did the Singapore Marathon 10 kilometer run today. Last year, I walked it with an older lady from my Dragon Boat team and finished in about two and a half hours. This year, I ran it on my own. I wanted to finish in under an hour to beat my 10K run-time of one hour and five minutes, which I did in October. But I think I finished in one hour and three minutes. I won’t get the official time until later.

It was tough-going. There were so many runners, it took me about 15 minutes just to get to the starting line. And even then, there were hoards of people in front of and behind me and I found myself dodging people, running up and down curbs to pass them, going sideways to get around the other runners. I think that added some minutes to my finishing time.

The best part of the run was at the end when I started to sprint toward the finish and people were cheering along the route. It felt so good that after I finished, I stood near the finish line and shouted out encouragements to the other runners until I was hoarse. I think some of them picked up speed when I shouted out at them, “Looking good! You’re doing great!”

I’ll bet if someone did a study, you’d find that runners and other athletes perform better when there are people cheering them on.

I’ve decided that next year, I’m running the full marathon. I was going to work up to a half-marathon next year and then a full marathon the year after, but I might not be alive by then. And even if I am, maybe I’ll be too sick to do any running. So I’m going for it next year.

A friend of mine suggested I raise money for charity when I run. So I’ll be hitting up all my friends and family to donate money to cancer research when I do my marathon next year. I’ve always felt awkward asking people for money or making sales pitches of any sort, but I’ll put my feelings aside for a good cause. Besides, I’ll only be doing one marathon in my lifetime.

Not Ready for Death

I was in a bookstore today and remembered a book someone had given me as a gift many years ago, “Tuesdays with Morrie” by Mitch Albom. I read it back then, liked it, then passed it on. I couldn’t remember much of it so I thought I’d buy it and read it again. I couldn’t find it in the “Literature” section, so I asked a clerk for help and he lead me to the book – in the “Death and Dying” section. After taking a copy off the shelves, I looked to see what else they had in the Death section.

There was a book titled, “Motherless Daughters”, written by a woman whose mother had died when she was about twelve. I skimmed through it. The author said a girl needs to have a mother – to share her excitement when she has her first crush on a boy, to console her when the relationship breaks up, to plan her wedding with her, be there when she has a baby, etc.

She said that losing her mother had a profound impact on her life and changed everything for her.

I thought about all these things and began to feel so sad for Josie. I thought of the things I wouldn’t be able to do for her. I started to feel for her as I would for a lonely, abandoned child.

But then I thought, my mother never did any of those mother things with me and I turned out just fine. So I left “Death and Dying” and went to the children’s section of the bookstore. Some cute picture books about rabbits and princesses put me right again.

I’m obviously not ready for Death and Dying. And neither is Josie.

Last Chemo. For Now.

I had my last dose of Navelbine today. From now on, I’ll just have Herceptin every three weeks. Navelbine is chemotherapy – it kills all fast-growing cells whether they’re cancer cells or healthy cells. Herceptin is immunotherapy. It slows down or stops the kind of breast cancer cells that I have from growing.

Because Herceptin targets breast cancer cells, it doesn’t have as many of the side effects that chemotherapy does. It does have one serious side effect though – it causes damage to the heart, especially when combined with certain chemotherapy drugs. So my heart is being monitored fairly closely.

So now what happens?

In four months, I’ll have another brain MRI and a PET/CT scan to see whether and where the cancer has spread. Depending on where and how much it’s spread, I’ll start another round of chemotherapy, maybe with Navelbine again or maybe with another chemotherapy drug.

The Herceptin will be for the rest of my life. I can’t get chemotherapy continuously for the rest of my life, since that would kill me. So we do a few cycles, wait, do a scan, do another few cycles, wait, do a scan, and so forth. The breaks give my body a chance to recover from the chemotherapy. Unfortunately, it also gives the cancer cells time to recover.

Here’s an analogy to illustrate how this all works:
Cancer cells = Enemy soldiers.
My immune system = My soldiers.
Chemotherapy = Allied planes carpet bombing the battlefield.
Herceptin = Allied soldiers blockading enemy supplies and reinforcements.
My anti-cancer diet, exercise = Battle conditions (weather, weaponry, etc.)

The chemotherapy was killing the enemy, but it was also killing my soldiers (healthy cells). It took out as many of the enemy as it could and left the rest to my soldiers. My allies (Herceptin) are blocking the enemy forces from regaining strength or growing. The enemy can still recoup and their soldiers can regain their strength. But if the weather changes in my favor AND my allies block them from getting fresh supplies, they might slowly freeze to death and waste away to a point where I won’t need the ally planes to carpet bomb again. My soldiers might be strong enough to beat the enemy, given the advantages of superior weapons, favorable weather and other battle conditions.

This is why it’s so important to me to keep up with the diet and exercise. More on that later.

Economics and the Meaning of Life

I’ve always thought about why I wanted to live and what, if anything, I wanted to leave behind when I died. My thinking has changed over the years and although getting cancer didn’t change my latest thoughts on this, the diagnosis has definitely made my desires more clear.

When I was in my twenties, I thought the world was a wonderful gift that existed for me. That might have been a by-product of my brush with Cartesian logic, extended to the belief that the world only exists because I perceive it, so it’s all there for me.

Later on, that became a bit more refined to: “Here’s the planet Earth. You have seventy-something years to enjoy it. The rules are 1) appreciate everything around you, 2) don’t hurt yourself, 3) don’t hurt others. If you can actually make other people’s lives better along the way, that’s an extra bonus.”

I thought, and still think, that we could all live by these basic rules and teach them to our children, since they cover pretty much everything. Three Commandments (plus an addendum) – a lot easier to remember than the Ten Commandments.

In all this time, I never really cared about leaving something of me behind – a great work of art, life-changing scientific research, whatever means of achieving immortality people fantasize about. My thinking was that after I’m dead, the world will no longer exist for me, so what do I care whether my art is hanging in some museum or people are reading my novels or singing my songs?

Since having children, I’ve begun to understand another reason why people might want to do something big and important with their lives. Maybe it’s not for egotistical reasons like wanting to be admired by future generations. Maybe it’s not even a desire for reassurance that their life meant something, that their time on Earth was not meaningless.

For me, I think it’s a matter of filling a gap. Think economics. If we take from a market more than we put in, then eventually, the market will become inefficient, with way-too-rich folks on one end, and starving children on the other. Unfortunately, that’s the way it is at the moment. I think I need to do my part to fill the gap. I’ve gotten a lot of pleasure from this world; I figure I need to put at least as much back in as I’ve taken.

So far, I’m in deficit. I’ve learned a lot from teachers, friends, even strangers. I’ve gotten a lot of happiness and laughs from people over the years. I’ve benefited from someone else’s hard work making the drugs that are saving my life. I hope I’ve taught some people some worthwhile things as a teacher and journalist. I hope I’ve made people laugh and brought them happiness. But I haven’t discovered any life-saving drugs. Deficit.

Since I’m not likely to find the cure for cancer before I die, I can tackle this deficit two ways: 1) Find some other means of repayment, or 2) Take a loan for future repayment. The first option would be me walking enough old ladies across the street to warrant my taking the fruits of some scientist’s blood, sweat and tears. The second option would be to groom my kids into cancer researchers or something else that would be equal in value in the world market. I’m trying to do both.

Of course, I don’t see any old ladies that need help crossing streets, but I see other breast cancer patients who need a reassuring word. I see a harried teacher who needs a parent’s understanding and support. I see a husband who needs encouragement and kind words. Little things. A LOT of little things.

As for future repayment… I’ve already brainwashed Josie into saying she wants to be a surgeon when she grows up. Actually, she says she wants to be a “princess surgeon”. I can only hope it’s the princess part she drops when she gets older and not the surgeon bit.

Thanksgiving

Happy Thanksgiving to my American friends and family. For those of you who aren’t versed in American culture, this is a time of year when families get together and feast on roast turkey and pumpkin pie. You’re also supposed to be thinking about all the things that you’re thankful for.

I’ve been thankful about a lot of things, before and after cancer, but since it’s Thanksgiving, I’ve compiled a list of things that I’m particularly thankful for this very moment (in no particular order).

1) I’m thankful that I’m not an Arab woman living in Saudi Arabia. I just heard on the news this morning that a 19-year-old Saudi Arabian woman who was gang-raped has been sentenced to 200 lashes and six months in jail. She was punished for being raped. I can’t imagine living in a society like that.

2) I’m thankful that I have two healthy, happy kids. I have too many friends who can’t have babies or whose children have been diagnosed with all manner of ailments. I think about how lucky I am almost every day.

3) I’m thankful that I have cancer and not my kids or Tony. Having cancer is no fun, but I don’t know how I’d handle watching my kids go through cancer treatment. And I’d rather deal with cancer myself than watch Tony do it. Plus, he has more earning power than I do, so after I die, he can provide for the kids. I’m not sure I could do the same if he were to die. Definitely not on a teacher’s or journalist’s salary. Yes, ever the pragmatist.

4) I’m thankful that I have such kind and clever friends. I’ve heard stories of people with cancer whose friends drop them or distance themselves. Most of my friends have gotten even more generous, kind, thoughtful, and fun. I’ve even made new friends or reconnected with long-lost friends since cancer. There’s nothing like the threat of never seeing someone again to make you want to get to know that person.

5) I’m thankful that someone is cooking me a Thanksgiving meal tonight. Can’t wait! I’ve been good all week, eating almost nothing but raw veggies for breakfast, lunch, and dinner. The only cooked stuff I’ve eaten is brown rice, organic brown bread, and beans. Plus, I’ve run 20 kilometers this week. I think I can make a teeny exception and have a bit of roast turkey tonight. I’m so excited! (I’m only doing this because I’ve just had chemo yesterday, and I assume the chemo will keep the negative effects of meat and sugar in check. That’s my rationale.)

Thankful for Body Parts

A while ago, I was walking down the street thinking about how lucky I was to be able to walk down the street. I thought how hard it would be to be blind, deaf, or legless. I wouldn’t be able to see the sky or trees, hear the birds or traffic, saunter or skip down the sidewalk.

Or what if I had a constant toothache or migraines that wouldn’t go away? Even minor pains and discomforts could eat into your enjoyment of a simple thing like a walk down the street on a sunny, breezy day.

This was before I had cancer. Now that I have cancer, I’m even more grateful for every day that I’m not bedridden or incapacitated because I know that day will come.

I used to put a value on the things we take for granted with a game I called, “Choose Your Body Parts”. This was before cancer. I’d ask Tony what body part he’d most be willing to give up. I’d go through the pros and cons of losing an eye versus an arm – I’d rather lose one eye over an arm, but if it were BOTH eyes, I’d rather lose an arm.

Tony thought this was a sick game. But what I was doing was imagining what life would be like without basic things we take for granted, like our sight, our hearing, our ability to stand up and walk.

When I was a 5th grade teacher, we had the students tape their thumbs down to their palms for an entire day to see how it would feel. Here’s something unusual to hear from a ten-year-old: “Thank goodness we have opposable thumbs!” You should try it. You’ll come away appreciating something you’ve probably never even given a thought to. And maybe many other things as well.

Feeling Special

I was talking to a friend today about where to send our kids to school. I said I’d like to go back to teaching and get a job in a school I want my kids to attend when they’re in high school. As soon as those words left my mouth, I found myself thinking, “That assumes I’ll be alive when the kids are in high school. Wow, what a dream that would be.”

This is how living with cancer is different from living in the real world. I know that we’ll all die someday, but I doubt any of my non-cancer friends think about their lives five, ten years from now and think they’re stretching it to believe they’ll still be alive.

I go about my daily life like a normal person, and then there are fleeting moments like this one that nudge me back to Cancer World. I don’t necessarily get sad about it or dwell on it, but I’m just reminded that I live in a different world from everyone else I know.

Being different can be special or it can be lonely. I feel special because I have cancer. I think I have a perspective on things that only comes with having life curtailed. I also feel lonely at times because facing death isn’t something you can share with anyone, not even other cancer patients. It has to be done alone.

But I have to say I don’t feel the loneliness very much at all. Mostly, I feel pretty special. I sometimes want to wear a T-shirt that says, “Be extra nice to me. I have cancer.” But I suppose that wouldn’t be fair to people who don’t have cancer.

I'm Two!

Maybe that’s taking the under-reporting of age too far. I’m forty-one today, but this is the second birthday I’ve had since I was diagnosed with cancer.

I just read the Blog entry I wrote one year ago. I wrote then that I’d “hold out for one more year”. Well, I made it to one more year. I didn’t think I’d have cancer again at this point, but here I am.

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.

What We Teach Our Kids

As parents, we assume we’ll be with our kids as they grow up, learning with them, teaching them the values that are important to us, hoping to mold them into better versions of ourselves.

But once you’ve got cancer, you’re not guaranteed to be around to do all that, so you feel like you have to cram everything in all at once.

Tony and I have a lot of similar values: compassion, tolerance, respect for others. But there are some things I value more than he does, and I want to pass these on to my kids before I die.

I want Josie and Toby to be strong, confident, independent, self-reliant, hard-working, disciplined and honest. I want them to recycle, clean up after themselves, help a mother get her stroller up the stairs when everyone else just walks by. I want them to prefer books over television, thank the person who made their dinner, and do a math problem over and over again until they get it right. I want them to fantasize about saving people’s lives rather than about the perfect house or car. I want them to pick themselves up when they fall, not cry or wait for someone to come along to help them. I want them to have the confidence and courage to point out that the Emperor is in his underwear.

These are big demands to make of anyone, but trying to instill these values in a two-year-old and a four-year-old is a bit silly.

For example, I’ve tried to explain to Josie why I turn off the water while I brush my teeth, why I don’t put my clothes in the laundry after just one wear, why I walk to the local shops instead of driving. But how do you explain depletion of natural resources, environmental pollution and global warming to a four-year-old? Al Gore can’t even get grown, educated adults to take environmental protection seriously. How do I instill respect for the environment in a pre-schooler?

I want my kids to think they’re better than everyone else, not because they have better grades, bigger houses, higher-paid jobs, but because they’re living a life they’re proud of (and that their mother would be proud of) and they struggle each day to do even better.

I need more time to pass on what’s important to me to my kids. But in case I don’t have that time, I’m talking about these things to Josie and Toby every day. I’m talking about them to my friends and family, so that they’ll know these things are important to me and they can pass them on to my kids if I’m not around to do it.

I’m not sure my family and friends know what I value. We don’t often sit around and talk about our values with each other. This isn’t exactly cocktail party conversation. Do you think your friends or even your family know what you consider to be important character traits and what you want your kids to value as they grow up?

You have the luxury of teaching your kids by example. I might not be that lucky, so I have to talk a lot and squeeze in as much as I can while I can. But maybe we should all talk a bit more about the things we value, regardless of whether or not our time is limited.

Good News! (6:00 p.m.)

The PET/CT scan showed almost all of my tumors are gone. On the last CT, there were dozens of black dots all over the chest area, but only three showed up on this latest scan. And the large tumors in the lungs have almost disappeared.

One surprise was when the oncologist said there was “no more” spread in the bones. No more? I didn’t know there was any in the first place! She had said “sternum” rather than bone, so it hadn’t registered as bone spread.

The conclusion: I still have cancer in the lungs, chest (soft tissue), and bone (sternum), but much, much less than I had before.

I’ll have one more cycle of chemotherapy (once a week for three weeks) plus Herceptin (indefinitely). I’ll have another PET/CT scan and a brain MRI in four months to see how things are going.

My religious family and friends will say this good news is the work of God.

My naturopath-loving friends will say this is the result of my no meat, no dairy, no sugar diet, plus the 35 supplements I swallow each day.

My doctors will say this is the chemo working.

Maybe it’s a combination of all three. We can’t know for sure, so it doesn’t hurt to cover all bases.

To celebrate this good news, I’m going for a run tonight!

Getting Ready for Bad News (9:00 a.m.)

I have a meeting with my oncologist this afternoon to go over the results of my PET/CT scan. We’ll find out what’s happening with the tumors and whether the chemotherapy is working.

I know some people say it’s negative thinking to prepare for bad news, but I think it’s being practical. I’ve always prepared for worst-case scenarios, so that when they don’t come to pass, I’ll be pleasantly surprised.

That’s why I took it so well when we learned my cancer had come back. Tony was very shaken up. He’d been prepared for good news, so he was hit hard when the bad news came. Even my oncologist was shaken up. She’d been expecting good news as well.

So this is my armor. I’m ready for anything. Well, maybe not anything. I’m not ready for the doctor to tell me I have a few months to live. But that’s such an unlikely scenario that I’m not even thinking about that.

This is what I’m preparing for: the chemotherapy has shrunk some of my tumors but some new ones have popped up. There seems to be some kind of mass in my brain but we can’t be certain what it is, so we’ll do an MRI to find out.

This is what I’m hoping for: the chemotherapy has worked wonders and most of the tumors are completely gone. I’ll continue with the current chemotherapy and we’ll do another scan in three months’ time.

I’ll be back to the Blog later today with the results!

PET/CT Scan

I had a PET/CT Scan today, the fourth one in two years. The radiographer told me each PET scan exposes you to radiation levels equivalent to ten X-rays. But the nurse showed me a brochure saying the PET radiation exposure is 3 mSv (millisieverts). That’s equivalent to about 150 chest X-Rays. So the radiographer was completely wrong.

I’m worried about my radiation exposure with all these tests. I know the risks of NOT doing these tests far outweigh the risks of radiation exposure, but I’m worried that doctors, radiographers and nurses have no idea what levels of radiation exposure they and their patients are subjected to.

When I asked my oncologist earlier this year how much radiation exposure was in a bone scan, she said “less than one chest X-ray”. Actually, it’s 200 X-rays.

I read about a study showing that less than 5% of doctors could accurately say how much radiation exposure was in a bone scan. So 95% of these doctors were recommending a diagnostic test based on false assumptions about how much radiation exposure was involved.

I read another study showing that healthcare workers in the U.K. who worked in mobile PET scan units had higher levels of radiation in their bodies than those who worked in hospital PET scan units. Why? Because those in the mobile units walked patients to bathrooms located a few meters away from the PET machines. Just walking next to their patients exposed these nurses to radiation.

I realize there are risks involved with radiation for both patients and healthcare workers. I know these risks have to be taken, and I’m thankful that doctors and nurses continue to work in this field despite the dangers. But I’m concerned that even the doctors and radiographers have no idea how much radiation is involved in these tests. And I worry that they’re not providing accurate information to their patients.

This is my biggest struggle with cancer treatment – having to fight for accurate information. Maybe I should worry about bigger things, like dying and facing the Great Unknown. But I like to worry about things I can get my hands on and my brain around. And facts are something solid that I can work with.

I’ll add this to my list of recommendations to the Health Ministry and the private hospitals, when I get a meeting with them someday.

What’s in a Date?

December 7 is an infamous date because it was the day the Japanese attacked Pearl Harbor, thereby drawing the U.S. into World War II. It’s also the date I found out I had breast cancer.

August 15 is another momentous date. It was the day Korea gained independence from Japanese colonial rule. It’s also the date I found out I had a recurrence of breast cancer.

I’m going to have a PET-CT scan tomorrow to see whether this chemo I’m getting is working, whether my cancer has spread, or tumors have shrunk. I wonder if November 6 has any historical significance.

I should be nervous about this test, even dreading this test. Instead, I’m looking forward to it like Christmas. I’m waiting for a big surprise and the anticipation is exciting and almost fun. Is something wrong with me?

I think I’m looking forward to this test with cheerful anticipation not because I expect it to show that my cancer has miraculously disappeared, but because I expect it to give me some more clarity about where my life is headed, literally.

I’ve been getting headaches for the past week or so, and I hardly ever get headaches. Maybe tomorrow’s test will show that I have a brain tumor. Or at least that I need to get another test, an MRI, to find out if I have a brain tumor. It might be a relief just to get that big hurdle over with.

It’s the difference between knowing there’s a monster somewhere out there waiting to get you but you don’t know when or where it will attack, and knowing exactly where the monster is and going straight for it on the offensive. As they say in sports, the best defense is a good offense.

Dragon Boat Race

My Breast Cancer Foundation Dragon Boat team raced in Singapore’s annual River Regatta today. We competed in two 300-meter races and came in last in both. But we had a great time doing it.

There were about sixty to seventy teams at the race, mostly with big, hulky guys or young twenty-somethings at the prime of their physical strength. We were a team of mostly 60-year-old grannies with missing breasts, chest muscles, lymph nodes, some with rheumatism that made it hard to get in and out of the boats. Obviously, we’re not in it to win it.

So why do we do this? Why do I do it? I think it’s important for people to see us out there. We turn heads. I hope we also change people’s preconceptions of what a cancer patient is. I want people to look at us and think, “Wow, look at those ladies with breast cancer. They’ll never win a race, but boy, have they got guts!”

And while most of the team are older ladies, I hope the handful of younger women like me make people think twice about whether cancer is only for old people. I want to be a walking billboard that says, “I’m young, strong, and healthy. If breast cancer can happen to me, it can happen to you, so DO THOSE BREAST SELF-EXAMS EVERY MONTH!”

One of the ladies on the team was only 26 when she found a lump in her breast. She found it while doing a self-exam, because 26 is too young for a mammogram or any other kind of diagnostic test. What a smart girl for finding her cancer herself instead of letting it grow inside her for years and years, only to find out at the age of 40 (the age mammograms are recommended) that she has LATE stage breast cancer. So if you’re in your twenties, keep this in mind if you ever find yourself thinking you’re too young for breast cancer.

Farewell Ceremony

I went to my Dragon Boat teammate Sue’s memorial ceremony tonight. The team paid a tribute to her with a dance to the tune of Gloria Gaynor’s “I Will Survive”, which I barely survived because I didn’t know the steps. And we sang a song for her about holding on together, which I could barely do through the teary eyes (plus, I didn’t know the words!) I know Sue would not only forgive us for our blunders through the dance and song in her honor, she’d be laughing.

The ceremony was in a church with the usual things you expect from a Christian ceremony – hymns, tributes, and a sermon from the pastor. The pastor said we should thank God for Sue’s talents, her energy, her enthusiasm, and her compassion. I thought secretly to myself, “I thank SUE for all of those things. Why do we have to give God credit for all that?” As Casey the preacher said in The Grapes of Wrath, “Why do we got to hang it all on God? Maybe the Holy Sperit is the Human Sperit?” Go Casey.

But I also thought about how much comfort it gave Sue’s family and friends to think that God had led her life and that she was now with God. And if she hadn’t died so suddenly, she might have felt peace in her final moments as she looked forward to meeting her creator. I guess some people need to hang it on God.

Last Chemo Before Scan

Today was chemo # 9, with the last of the side effect drugs gone (Zofran for nausea), AND with the white blood cell booster shot immediately after, instead of 24 hours later. So far, no nausea. A slight fever and achy legs, but the aches are from the G-CSF (blood cell booster) shot and the fever is from my kids. Josie and Toby have both had fevers this week so I assume I’ve got whatever they had.

This completes three cycles of chemotherapy and now we see if it’s done anything to the tumors. I’ll have a PET-CT scan next week to find out. That’s the test where they inject you with a radioactive glucose solution, then put you through a tunnel machine. And you have to lie perfectly still for an hour or so while the machine takes pictures of your body from head to toes. The bits that light up are the places where the cancer cells are most active because they feed on sugar and metabolize sugar much faster than healthy cells.

This PET-CT scan is about the most accurate test available, but apparently, no scan can pick up a tumor smaller than a pea. Also, this scan’s not that great for finding cancer in the brain, which is a real worry for me since, in my case, that’s the most likely part of the body for my cancer to travel to.

One of my Dragon Boat teammates died recently of Deep Vein Thrombosis after being diagnosed with a recurrence of breast cancer for the third time – in her lungs and liver. Her death had nothing to do with cancer. But the autopsy showed that she had a 3-centimeter wide tumor in her brain. The PET-CT she had just two weeks earlier had not picked that up.

So I could have a golf ball-sized tumor in my head and this high-tech, radioactive, $3,000 test won’t even detect it. If I really want to know what’s going on in my brain, I’ll have to get a brain MRI in addition to the PET-CT. That’s more money. And I’d probably have to do this every three months for the rest of my life – a life that could be shortened by all the radiation exposure from these tests! What a Catch-22!

TV Interview Replay

To those of you in Singapore, I’m sorry I didn’t give you any warning about when the TV interview was going to be on. But I’m told now that it will be replayed on Channel News Asia on Thursday, November 1 at 5:30 p.m., if you’re still interested in watching. It’s a 30-minute program called “Get Real”, and my bit is the last segment.

I’m not sure what time it will be on in other Asian cities that get Channel News Asia.

Thanks for your interest in the program.

Interview Aired!

I just saw the interview I did for the current affairs program about dying. I thought it represented me pretty accurately. They chose the parts I think I would’ve chosen, if I were the producer.

For those of you who missed the program, some choice quotes:

“I don’t know, how do you do this dying thing? I’ve never done it before!” (So much for sounding intelligent and thoughtful!)

The presenter asked, “How do you live, knowing that you’re dying?” My answer: “By living right up to the moment I die.”

I don’t even know if that makes any sense. What I meant was, I’ll keep living day to day, doing normal being-alive things like grocery shopping and playing with the kids. Unfortunately, I don’t think I’ll actually get to do stuff like this up until the moment I die. I think there will be some downward spiral in my physical condition, so toward the end, I won’t be able to speak or sit up in bed, let alone do the shopping.

I’m really curious about just how the ending will play out. I want to be mentally prepared if it’s going to be a long, drawn-out painful process. I guess I’ll have time to get details about all that later on.

For now, I’ll keep doing the shopping and kissing my kids too much.

Doing the Interview

The interview wasn’t nearly as natural and comfortable as my initial conversation with the producer was. It’s one thing to answer someone’s questions; it’s another to answer those questions again, while trying to remember what I’d said the first time. I’m afraid I’m going to sound like an inarticulate babbler. All those years of being an on-air TV and radio reporter didn’t help me at all!

It was really important to me that I came off sounding intelligent and sensible so that what I had to say would be taken seriously. I hope I haven’t blown it!

And one surprise addition – they interviewed Tony as well. He said some things that he’d never even said to me. He admitted that he felt depressed at times and felt the pressure to be strong for me and the kids. I didn’t know that.

I didn’t have a chance to talk to any friends with breast cancer before doing the interview, but I talked to a good friend whose opinion I respect. She said her gut instinct when I told her the program was about dying was to tell me not to do it. But when I told her my reasons for wanting to do it, she changed her mind completely and encouraged me.

Here were my reasons for wanting to do this.

1) Take the terror out of dying. I think it’s possible to die with readiness, dignity, and class. I want to set an example for my friends and family and show them that death is a part of life (Didn’t the “Lion King” teach us that?) and we should learn to appreciate life without fearing death.

2) Show that people can live with cancer and have hope for a cure and a future, without being in denial about death.

3) Set an example for my friends with breast cancer and show them that they, too, can be strong.

I’m also hoping this will help me in my project to set up a doctor/patient communication skills training program in Singapore. If people in high places see this program and recognize me when I call them up to discuss my ideas, they might be more willing to listen to me as someone other than just a complaining patient.

I might look like a bit of a media hound because this will be the third interview I’ve done about cancer. But I’ve never had a problem with people using the media for a good cause. I know some people slag off celebrities who adopt causes and accuse them of doing it for their own public image. But if you can use your fame to draw attention to starving children or abused animals, why not?

TV Interview?

I got a call from the local news channel today. They want to interview me for a current affairs program about death and dying. I was taken aback at first when the producer told me what the show was about. “Dying? I’m dying?” was my immediate thought.

The producer had found out about me from a newspaper article featuring members of my Breast Cancer Foundation Dragon Boat team. In that interview, I’d mentioned that women with metastatic breast cancer lived an average of 24 months.

The TV producer explained that the purpose of the program was to take the fear out of death and make it a less taboo topic. In most Asian cultures, certainly among the Singapore Chinese, people just don’t talk about death. They think it’s bad luck or just can’t face the idea of death at all.

The show would include two other people besides me. One is an elderly woman who isn’t sick, but is preparing for her death. The other is a woman whose father recently died.

The producer spoke to me at length about my attitude toward death and I was very comfortable telling her everything honestly and candidly. I told her I’d let her know tomorrow whether I’d agree to the interview or not.

I’m worried about two things. First, Tony. How would he feel about his wife talking on TV about dying? Second, my friends with breast cancer. I’m worried that if they see me talking about death, they’ll think I’ve given up, which is far from the truth. I’m also worried that they’ll see my fate as their own. “If Shin can’t beat it, maybe I can’t either.”

By huge coincidence, just before the producer called me, I was on the phone to a friend who has gone through breast cancer treatment and told me, “You’ll be okay, Shin. If you fail, I’ll fail.” I tried to tell her that her case was completely different from mine – she was only Stage I, which has a five-year survival rate of 100 percent.

I asked Tony how he’d feel about me doing this interview and in typical Tony fashion, he said, “You should do it. You’d look cute on TV.” Gotta love him. I haven’t had a chance to talk to any of my friends yet though, so I’ll have to decide tomorrow what I’m going to tell the producer.

Chemo Menu Choices

I had my weekly chemo treatment yesterday, followed by the G-CSF white blood cell booster shot today. I felt wobbly and achy in the legs when I went for a walk tonight. Usually, it takes a couple of days after chemo before I start to feel weak and tired. So I guess the cumulative side effects of chemo are creeping up on me.

Next week, I’m going to try getting the chemo without the one remaining side effect drug, Zofran, which is for nausea. I just want to see if I can do without it. I’m also going to get the G-CSF shot immediately after chemo, on the same day. That’ll save me an additional trip to the hospital every week. I just hope that my white blood cells will respond as well getting the shot 24 hours earlier.

Boy, I really like being able to decide how I get to do my drugs. It’s like looking at a menu. I’ll have two main courses and do away with the side dishes and appetizers, please. And I’ll have my dessert today, rather than wait until tomorrow.

Luckily, I have a doctor who doesn’t let ego get in the way of doing what’s best for her patients, including letting her opinionated patients have a say in their treatment.

I just read about a new chemo drug for metastatic breast cancer that was approved by the FDA this week. I read that story with the excitement of a fashionista reading about what’s new this season. I thought, “Ooh! Maybe I can try that one too! Add that to my menu!”

It looks like I have a lot of goodies on the chemo menu to try yet, and I’m looking forward to sampling each one on my way to a cure. Okay, maybe “looking forward to” isn’t quite right. In my pre-cancer life, I tried not to think about the high fat content and sugar levels when choosing from dessert menus, so I won’t think about the nausea, organ damage, and other possible side effects of the chemo for now.

Reality Show Idea

I have a great idea for a TV reality show called, “Save My Life”. You get somebody with a terminal illness, say… me. Then you get a bunch of candidates who claim they have the cure for cancer.

Line up the practitioners of energy healing, meditation, visualization, color light therapy, soul journey therapy, reiki. Then the foodists who advocate liver detox diets, raw food diets, juice diets, grapeseed diet, herba mate, wheatgrass, spirulina and so on. And if putting the right stuff INTO your body’s not enough, you can go for the ones that take the nasty stuff OUT of your body with colonics and coffee enemas.

Then there are the religious folks who say prayer will cure cancer. Praying Christians, chanting Buddhist monks… we can throw those into the mix too.

And finally, there are those miracle workers who defy categories. These people were born with a “gift”, a mysterious ability to make cancer cells disappear without any medical procedures. Let’s have those as well.

So we take all these candidates and give each one a month to get rid of my cancer cells. I would offer myself up as a guinea pig for the good of all cancer patients and their caregivers who are going bankrupt paying for all these alternative treatments. If they fail, the world will see them for the fakes that they are. If they succeed, they can franchise their operation and the money will roll in. Meanwhile, I’ll be cured. What’s not to like?

I DO believe some of these alternative therapies work to help our bodies fight cancer. I don’t believe any ONE thing can CURE cancer, not even conventional medicine. I can get the best surgeons, the latest chemotherapy drugs, and the most high-tech radiation therapy available, but if I drink, smoke, eat junk and sit on my butt all day and wallow in my misery, cancer will win. Likewise, I can have every priest and monk in the world praying and chanting for me, do the colonics, eat only raw veggies, and meditate all day long, but my cancer will not go away.

I don’t trust any ONE solution. I’m my only solution. So I’ll take the best that conventional medicine has to offer. I’ll take the alternative therapies that make sense to me. And I’ll have faith. Faith in the human body’s amazing ability to heal itself, faith in the good intentions of people around me, and most of all, faith in myself. Yes, I will still die. But I’ll do it INTELLIGENTLY.

I still think the reality show idea is a good one. So to my friends who are in the TV business, feel free to use my idea.

“It’s Not Fair!”

That’s not me talking; it’s Toby. I’m not sure how a two-year-old forms the idea of fairness in his mind, but he’s been saying this a lot lately. When I say it’s too late to read another book at bedtime, when I won’t let him have chocolate milk for breakfast, when I say he can’t have dessert until he’s finished his dinner, almost anytime he doesn’t get what he wants, he says, “It’s not fair!” And with such indignation, too.

I think even at this early age, kids have a clear idea of the way things should be. He’s so adamant that he should have his dessert without finishing his dinner, no amount of reasoning will convince him otherwise. His sister gets her dessert, therefore he should have his too. Nevermind that Josie’s finished her dinner. That’s not the point. She gets dessert; he should get dessert. In his world, little boys should get dessert when they want it.

I don’t think we completely grow out of this idea of fairness. When people who get cancer say it’s not fair, they have an idea of the way things should be. In their world, people who eat a healthy diet, exercise regularly, don’t drink or smoke, help little old ladies across the street and don’t cheat on their taxes shouldn’t have such a terrible thing happen to them. They ask themselves (or God, or the universe), “Why me?”

And the righteous indignation that Toby adopts in challenging the unfairness of the world is as naïve at the age of forty-two as it is at two. Who says little boys should get dessert whenever they want it? Who says only lazy, unhealthy, cold-hearted people get cancer? How does fairness come into this at all?

I think what Toby’s really saying when he cries out this new favorite phrase of his is, “Hey! I thought I knew what this world was about but now you’re changing the rules on me and I don’t know what’s going on anymore!” Okay, maybe I’m reading between the lines a bit, but isn’t that what we really mean when we say something’s not fair? Our preconceived notions of the way things should be are turned upside down and we’re left struggling to find out why, while desperately clinging to our notion of life as we knew it.

I never asked, “Why me?” or cried, “It’s not fair!” I’ve read enough about cancer to convince me that there are too many factors and unknowns in this to even ask such questions. Besides, remember what our parents used to say to us: “Life isn’t fair.”

And when you have cancer AND you can’t have dessert whether you finish dinner or not, that’s a double whammy. Toby will someday understand. Meanwhile, he’ll just have to live with having a mother who dishes out injustices instead of ice cream.

Go Forth and Blog

This Blog has turned out to be a great way to keep in touch with friends and family. I just ran into an old friend whom I hadn’t talked to in a year, but she’d been checking my Blog and knew what’s been happening with me.

I think everyone should keep a Blog. That way, if your family or friends ever want to see what you’ve been doing, they have a Web site to go to, to find out about your lives.

One of the best e-mails I’ve gotten lately was a step-by-step account from my sister of how she spent her day – eating breakfast, feeding the dog and cats, going to work, making dinner, etc. It may seem boring to her, but it made me feel like I was with her going through her daily life. I loved it. It’s the little things that color in the outlines of our lives, after all.

I don’t think we should wait for Christmas or for someone to get married, give birth, move to a new country, or even die to get in touch with people.

So I encourage all of you to go set up your own Blog. Google “blog”, and you’ll see dozens of sites where you can set up your own personal Blog for free.

I’m a real Luddite when it comes to computers, but I’ve become a big Blog believer. Say that five times really fast, then go set up your own Blog. And send me your new Blog address!

Cancer Good for Health

I ran the Great Eastern Women’s 10K this morning. I finished before they took down the street barricades, which is a good sign. I had 40 years to get into shape and it took cancer to get me off my lazy butt and do a run.

I’m more fit than I’ve ever been in my life. (Except for the cancer.) Oh, the irony of it. Since the diagnosis, I’ve started running, I’ve given up drinking (Impossible! But yes!), and I’m as healthy as a rabbit, most likely because I’ve been eating rabbit food. Cancer has been very good for my health.

And cancer has been good for my friends’ health. Some of them have started exercising, many are eating healthier food and cutting down on alcohol, and one woman I hardly know has quit smoking because of me.

I guess cancer is your body’s way of saying, “Hey! I’m not invincible! I might give out on you some day, so take better care of me!”

It’s heartening how many people run marathons, climb mountains, do cross-country cycling trips to show support for someone they know who has cancer or some other disease.

So, funny as it sounds, cancer can be good for our health.

Click here to see a funny faux-news video clip from The Onion, a news satire Web site, about just this.

Chemo #7, Medical School

My blood counts were good enough to get chemo today. I think my new strategy of getting the white blood cell booster shot (G-CSF) after, rather than before chemo, is working. This is the first time in weeks that I haven’t failed the blood test and had to get a shot to artificially boost my counts enough to get chemo.

Now that I’ve cut out all those side effect drugs, I’m awake and alert during chemo whereas before, I was knocked out for an hour and a half and didn’t know what was going on. Now I’m writing down how long each drip takes and can see what dosage the nurses are giving me.

One nurse saw me taking notes and asked me why I was recording everything. She asked if I planned to write a book someday. I guess she’s not used to her patients taking such an interest in their treatment. I told her I was studious during my pregnancies as well, and those were not life-and-death situations. I’m trying to keep myself alive as long as possible, so I feel I should know as much as I can about my treatment.

One of the side effect drugs I cut out was magnesium sulfate. At the hospital in Sydney, they said I didn’t need it. My doctor said it was to prevent peripheral neuropathy, a tingling sensation in the fingers and toes, which is a side effect of the chemo. I searched the Internet and found no convincing connection between neuropathy and magnesium sulfate, so I asked my nurse about it. She said a new article had come out showing that magnesium sulfate reduces the risk of neuropathy. I asked her for the article and read it. The study cited in that article is about an entirely different drug from the one I’m getting.

Is this nurse confused about the chemo drugs? Or maybe she assumes the chemo drug in the study and my chemo drug will react the same way with magnesium sulfate?

The article was in an oncology journal and full of medical terms, so I had to decipher it as best I could. This should be my new job: a cancer researcher. I should try to learn the medical terminology and the basics of the human body and how it works. So I bought a little model of the human body with the circulatory, digestive, and other systems displayed in a 3D model. I got it for me and Josie. We can put ourselves through medical school together.

It comes down to this: I now have the most important job I’ve ever had -- that of saving my own life. The doctors will do the best they can, but I won’t leave it to them. As I’ve always said, they have hundreds, thousands of patients to think about. I have only one. They might have more medical knowledge than I do, but I have something they don’t have – a personal, vested interest in making sure this patient lives as long as possible.

Cancer and Other Struggles

A recent Blog comment has gotten me thinking about pain that people live with everyday. “Anonymous” commented on my October 8 Blog that she learned her husband has been unfaithful to her. I know infidelity is a common thing – movies and TV shows treat it like it’s normal and accepted in our society. But when it happens to you, I think it can break down your ability to have faith in anything, including yourself.

I’ve written in an earlier Blog about things worse than cancer – living in a war zone with the threat of bombs and sniper fire around you everyday, not being able to provide food and shelter for your family, being homeless and jobless with no hope of making life better for you or your children.

I know cancer survivors who were abandoned by their spouses or girl/boyfriends after they were diagnosed. I have a girlfriend who is going through cancer treatment AND a messy divorce at the same time. Her husband’s argument for getting custody of the kids? She’s going to die of her cancer soon. I have a friend who thought she might lose her newly adopted baby because she was diagnosed with cancer. Why would an adoption agency give the baby to a woman who’s going to die?

I have a friend who, in the space of a year, was diagnosed with Multiple Sclerosis, lost her two-year-old to SIDS (Sudden Infant Death Syndrome), saw her husband through an accident that nearly killed him, AND had a teenaged daughter whose boyfriend tried to rape her. How do people survive such blows and get on with life? And this woman is one of the most positive, cheerful people I know.

I’m awed by the strength it takes for people to live through heartaches like these. Sure, we’re not threatened by bombs and guns. We don’t have to turn to prostitution to buy food for our kids. We don’t watch our children go to bed hungry every night. These are the REAL problems people have in faraway places or on the evening news.

But in some ways, struggles with basic survival might be easier than struggling with matters of the heart. Trying to find food for your kids is a concrete, tangible, and universally acknowledged problem. Struggling with an unhappy relationship can be a lonely, scary tunnel of despair.

I’ve asked myself if I’d trade in my cancer for a life without Tony and the kids. Would I prefer to have cancer with them or be cancer-free without them? No question: I choose cancer.

“Anonymous” is right. I have a lot. I’ve always considered myself luckier than most and I still do, even with cancer. Cancer is not necessarily a greater struggle than some of the other struggles that my friends are going through. In a way, I’m luckier than my friends. When you live with cancer day to day, people praise you for being brave. When you’re complaining about divorce or a cheating husband, people aren’t that impressed. Well, I’m impressed with my friends’ strength and wisdom in coping with their problems. Sometimes, I think I have it easy.

Arrogance, Ignorance, and Flyers

Ever since my first cancer diagnosis in December 2005, I’ve been carrying around flyers that show women how to do breast self-exams. I give them out to my girlfriends, school mothers, even ladies at the supermarket check-out counter. I gave one to my banker to give to his girlfriend.

My reason for engaging in this unsolicited information distribution (which I’ve always found annoying) is that if I had been given one of these flyers back in July 2005 when I first found a lump in my breast, if I’d been nagged about getting my lump checked, if I’d known half the things I know now about breast cancer, I’d have ignored my doctor’s diagnosis that the lump was just a clogged milk duct and I would have gone for a second or even third opinion. Then maybe I’d have found out about my cancer before it spread beyond the breast to the lymph nodes and I’d have longer to live.

Last week, I handed one of these flyers to a mother at Josie’s school. She took a cursory glance at it and handed it back to me, saying, “I don’t need it.” Maybe she didn’t need it because she was a seasoned breast self-examiner. Maybe she already had breast cancer and had a mastectomy like me and didn’t have any breasts to examine. But I got the sense that she suffered from the same arrogance and ignorance I did before cancer hit me.

Two years before I was diagnosed, a friend of mine was diagnosed with breast cancer. She didn’t tell me about it herself; I heard about it through a mutual friend. At that time, I knew nothing, really ZERO, about breast cancer. I thought my friend wanted it to be a secret so I didn’t even ask her about it. I was so clueless that learning about a friend’s breast cancer didn’t ring any alarm bells when I found a lump in my breast two years later. I was arrogant enough to think that cancer had nothing to do with me. I was ignorant enough to think that Asians with small breasts and healthy lifestyles just don’t get cancer.

Since that time, I’ve learned a lot about breast cancer and the factors that put women at risk. I’m in just about the lowest risk category possible and I STILL have breast cancer. For the SECOND time.

So I’m going to be annoying and keep handing out these flyers. I’m going to keep talking about breast cancer to anybody who’ll listen. I’m going to make breast cancer so much a part of who I am, that if anyone I know ever has a lump or any other sign of breast cancer, she’ll think of me. And, I hope, she’ll be smarter than I was and have it checked out.

Here are some sobering statistics: One out of eight women in the U.S. get breast cancer at some point in their lives. In the U.K, it’s one out of nine. In Singapore, it’s one out of twenty. So the chances are pretty high that someone you know will be diagnosed with cancer. Someone other than me, that is.

Since my diagnosis, one other mother at Josie’s school has been diagnosed. And I learned that another mother had breast cancer the year before. That makes THREE mothers at the school diagnosed with breast cancer in the past three years. And this is a tiny school of only 110 kids. I’m going to feel personally responsible if any other mother at the school is diagnosed with late-stage breast cancer, so I’m going to be a gadfly and keep it up with those flyers.

Panicking About Time

A friend of mine asked me if I’m panicked about time, now that my cancer has returned. I’m not, but I wonder if I should be.

Given that the average metastatic breast cancer patient lives for 24 months, we could say I have about that much time left. But that average includes patients whose cancer returned many years after the first diagnosis. Mine came back less than a year after my initial treatment was finished. So logically, I’m on the lower end of that 24-month range. So I should be panicking about time, getting my affairs in order (what exactly does that mean?), writing letters to my kids, giving my stuff away, apologizing to people I’ve pissed off during my life.

But it seems I’m not taking this dying thing seriously. I haven’t done any of the things that I should or would be doing if I really had less than a year left. In fact, I’ve started a few projects that could be long-term.

Sometimes I get really worried that I’m going to get stuck suddenly with very limited time, sick and in no state to write those letters to the kids. And then I’ll be sorry that I wasted all this time doing silly everyday things.

Then again, I don’t want to start preparing for my death because 1) it’s morbid and pessimistic, 2) it’s logistically difficult because I have two young kids to look after and just don’t have the time, and 3) it’s overwhelming because really, how do you prepare to die? Is there a manual on this, with chapters telling you what paperwork you need to get done, how to book a funeral, who to invite to the deathbed? Maybe I should write one, except by its very nature, anyone who’d write this stuff from experience would be dead and would have no reflective tips to give after-the-fact.

This is a real dilemma. How do you live while you’re supposedly dying? Tell me, all of you reading this Blog. What would you do in my position?

Chemo #6, Doing It My Way

My blood counts were good today, so I got my chemo. But I got only one of the side effect drugs instead of the seven my doctor had been giving me. And I got a slightly higher dose of Herceptin than I used to get, and a higher dose of Navelbine (chemo) than I got in Sydney.

All in all, I think I’ve taken into consideration the advice and methods of my doctor, the doctor and nurse in Sydney, and the information I’ve read on the Internet and come up with my own customized treatment for myself. I feel good about that. Of course, it could turn out my dosage is all wrong and I’ll develop horrible side effects, in which case I’ll be rather annoyed with myself. But for now, I think I’ve come up with the best treatment tailored for me. And, as my doctor admits, we’re all pretty much just guessing anyway.

Tomorrow, I go back for a G-CSF (Neupogen, Gran, Filgrastim) shot, which will boost my white blood cell count. Chemotherapy kills white blood cells so the body sometimes needs some help replacing them after chemo. Until now, my doctor has been giving me the G-CSF shot the day before my chemo if my blood counts were too low, which is what happened yesterday. But now we’re going to take a prophylactic, or preventive approach and I’ll get a shot the day after chemo, to prepare my white blood cells for my next chemo.

It was my decision to have the G-CSF shot the day after chemo. My doctor gives the shot on the same day as the chemo because she believes an American study that shows no difference in efficacy whether the shot is given the day of or the day after. But it seems to me that chemo would kill off the new white blood cells injected in the G-CSF shot if they’re given at the same time. My reasoning is that these blood cells would have less chance of getting killed by the chemo if they were not injected straight away.

I might have a faulty understanding of how this works, but in the absence of any counter-argument or clarification from my doctor (other than one American study), I’m going to go with what makes sense to me. Luckily, my doctor has no problem letting me decide to do it my way, even though she does it another way. I think she trusts that I’m informed enough to make this decision, given that there is no solid evidence that one way is better than the other. I’m thankful that my doctor doesn’t let ego get in the way of letting me do it my way.

I still don’t feel any side effects, and it was quite nice to walk out of the chemo clinic feeling alert and energetic. I ran more than ten kilometers tonight – my all-time longest run. I’m training for a 10K women’s run in three weeks’ time, plus another one for the Singapore Marathon in December. I won’t be running the marathon, just the 10K event. I hope to work up to a marathon by next year. It seems a pretty common thing – people who get cancer want to run a marathon. There’s the obvious symbolism, of course. But for me, I don’t have a lot of things on my list of “Things to do before I die”. Finishing a marathon seems like an easy one to put on the list. Besides, it shows optimism. It presumes I’ll still be alive next December.

Chemo Missed Again, Plus Lessons Learned

I went for my weekly chemo treatment today but my white blood cell count was once again too low, so I just got a shot of Neupogen to boost my white blood cells. I’ll go back tomorrow to see if my counts are up enough for chemo.

I had a long conversation with my oncologist – the most satisfactory one I’ve had so far, in terms of getting the information I wanted.

I asked her why my treatment in Sydney was so different from what I was getting in Singapore, specifically the dosage of the chemo, as well as the number of side effect drugs.

The conclusion was what I’d said before – that in Singapore, they take a more pre-emptive approach and overmedicate to prevent any possible side effects that might come up, whereas in Australia, they wait to see if there are any side effects before giving medication for them.

But my oncologist elaborated in much more detail the reasoning behind her decision to pre-medicate so that I’m aware of her thinking process and can make more informed decisions. Better communication is all I needed.

It seems my doctor follows the American approach in aggressively eliminating even the slightest risk of allergic reactions to the chemo or other side effects. She was giving me five drugs for nausea and two drugs for potential allergic reactions to Herceptin. I’ve had two doses of chemo now without these side effect drugs and I’m fine. She said allergic reactions can build up over time, as in the case of one of her patients who was fine on Herceptin for the first several doses, then developed a strong allergic reaction and was unable to breathe. I suppose that might be a minimal risk, but I can see why a doctor wouldn’t want to take such a risk. That’s especially the case in the U.S., where malpractice suits are quite common. So that explains why she had me on so many side effect drugs.

In Australia and Europe, it seems they’re much more cost conscious because they have national health systems. So doctors and hospitals are encouraged to keep costs down by NOT prescribing drugs until they become necessary. If I’m in the 95% that do NOT have any side effects, then I’m getting all these additional drugs unnecessarily, at greater cost to me (but not the national health system). But we can’t know whether or not I’m going to have a side effect until I actually have it. The problem is that in some cases, by the time a patient exhibits a side effect, it’s too late to do anything about it. There’s the dilemma.

I’ve decided to take the middle ground between the two approaches and get just a few of the side effect drugs. If I later develop side effects, I’ll have no one but myself to blame.

I’ve also learned that some of the reasoning behind my doctor’s approach to treatment comes from very recent and less publicized studies that the Australian doctors are either unaware of or are choosing to ignore. Opinions are so varied among doctors, hospitals, and countries about which approach to take that there’s no absolute correctness to any one approach. And many drug treatment protocols are based on just a handful of studies with just a handful of test patients. Still more frightening… some are based on pure guesswork, with no concrete scientific evidence at all.

My doctor told me about one lung cancer drug that has been withdrawn from the European market because it has shown no response in the patients tested. But among Asian patients, the results have been very good. Why does this drug work in Asians but not in Caucasians? Is anyone studying this? Probably not. Meanwhile, doctors in Asia are prescribing a drug that has been taken off the market in Europe. And Asian patients in Europe might not be getting a drug that could help them. Very complicated.

So it seems there’s no right or wrong in this. The Australians have their methods and reasoning and so does my doctor. I found the Australians more convincing because they were more communicative and articulate. But now that my doctor has provided more information to explain her approach, I find myself landing somewhere in the middle.

I’ll probably need to do a chemo session in the U.S. when we’re there during the Christmas holidays. Then I’ll have one more country to add to my collection. Maybe I should plan a chemo trip to Europe as well. I wonder if I can apply for a research grant for comparative chemo by country using me as the subject…

Visit to Healer

I went to a professional healer today, at the urging of two friends. He has supposedly cured a number of people of cancer. I’m a bit skeptical about most alternative therapies, but I thought I should try him out because my friends swore by him.

He asked me some questions about my cancer and offered some observations such as, “You have at least six tumors”, then later on in the session, “You have more than ten tumors”. This wasn’t too difficult a deduction since I’d told him the cancer was all over my chest and in my lungs.

He told me a few other things about myself. He said I had no “joy”. I told him I thought I was a pretty happy person, cancer aside. He said I might be happy, but I didn’t have “joy”. He didn’t elaborate.

He had me lie down on a massage table and yanked at my arms, legs, and cracked my neck. He said this was to release my energies. He had me float my hand over my heart and asked if I felt any warmth. I tried to feel it; I willed myself to feel it. But I didn’t.

He said I needed to believe in his methods or they wouldn’t work on me.

This is the same circular logic that gets me stuck with Christianity. Either you’re in the circle of faith or you’re out. And if you don’t have faith, which by definition is belief without reason, then you can’t be saved. I wish I could have faith, but I don’t. It’s just not there. I don’t know how to get it, but I’m pretty sure I’m not going to be able to buy it at $120 an hour.

The healer said I had cancer because I didn’t “know myself” and if I were to “find myself”, then I’d be cured of my cancer. This idea of finding oneself is so vague and subject to so many interpretations. I find this obsession with finding one’s “essence”, whatever that means, can be quite egocentric and selfish. This is what bothers me about Buddhism. I never liked the idea of these monks forsaking the world, abandoning their families and loved ones, so they can go sit on some mountain and reach nirvana. Isn’t that the ultimate in self-centeredness?

I think we’re always learning new things about ourselves and some people are more self-aware than others. I think finding oneself is like finding happiness – it’s the process that’s important and people aren’t meant to sit back at some point in their lives and say, “Aaah, I’ve found myself. I’m truly happy.” Because once you reach that point, what are you supposed to do next?

This healer might have helped many cancer patients, but so have doctors. I’d wager that the percentage of cancer patients saved by conventional medicine far exceeds the percentage saved by alternative therapies. I’ve heard many stories about miraculous cures, people whose cancers completely disappeared without any medical intervention. I believe that’s possible through a confluence of events, including environmental and lifestyle factors – the same myriad factors that came together to cause the cancer in the first place. We can’t explain them because they’re too complex. They’re miracles.

If you believe in miracles, then miracles will happen for you. A rainbow is a miracle or a sign from God. Or it’s the result of the refraction and dispersion of sunlight by moisture in the air. It’s more beautiful to think of it as a miracle, so I don’t begrudge people who can see it as such. They might be the lucky ones. But I can see a rainbow’s beauty and still appreciate the science behind it. I can see myself being cured of this cancer and appreciate the science behind it – a science which I believe is in itself a miracle.

Chemo Comparison

I had one chemo treatment in Sydney, Australia during our family vacation. I just got back to Singapore and had another chemo treatment today. What a world of difference in the two experiences!

The chemo room in Sydney was warm, lively, buzzing with activity. Patients were busy reading or chatting with their chemo buddies, while nurses scurried about calling out greetings to patients and engaging in friendly conversation.

The chemo room in Singapore was cold, quiet, and full of sick-looking people. The patients were all asleep. This may be due to the fact that the Singapore doctor is giving all her patients drugs that knock them out, as she had been with me.

I learned in Sydney that I’d been getting seven drugs to control side effects, none of which the oncologist there thought I needed. So when I went for my chemo today, I asked to have my chemo without these side effect drugs. For the first time, I was awake during my chemo and left the doctor’s office feeling awake and energetic instead of groggy and drugged.

I think the Singaporean approach is to overmedicate just in case a patient develops side effects, while the Australian approach is to wait to see if a patient has side effects before they start prescribing drugs. I’ve had no side effects. I ran seven kilometers tonight without any problems. In fact, it was my fastest time yet. No side effects. I’d been taking seven side effect drugs that I didn’t even need. That’s about S$500 worth of drugs each time I had chemo.

That brings me to a big problem with doctors and drugs in Singapore. Here, doctors dispense the drugs they prescribe. So the more drugs they prescribe, the more money they make. That kind of collusion would be considered illegal in the U.S.

The nurses in Sydney were more knowledgeable, articulate, and communicative than any doctors I’ve had in Singapore. In Singapore I have to fight for every bit of information I get. In Sydney, the nurses were amazingly well informed and very good at explaining every aspect of my treatment with me. I’ve gotten answers to questions I’d been asking my doctor for months without getting clear responses.

When a nurse came to me and introduced herself to me, I hesitated for a second before responding because it was such a new experience for me. Since my diagnosis almost two years ago, no doctor, nurse, or technician in Singapore has ever introduced themselves to me. A simple “Hi, I’m so-and-so. I’ll be doing this procedure for you today” is something I’ve never heard here in Singapore.

On the other hand, the oncologist in Sydney was very impressed with my scans. I don’t think she’d ever seen a whole body MRI before. So technologically, Singapore is ahead of Australia. But in the human touch, Singapore is greatly lacking.

Where does this leave me? As my situation deteriorates, I’ll be getting into more complicated drugs and surgeries. The thought of going through another surgery in Singapore, especially something as risky as brain or spinal surgery is scary. Not that the doctors here aren’t qualified and skilled, but I can’t imagine having a satisfactory conversation with a doctor here about the surgery or after-effects. Not being able to talk about this stuff with your own doctor due to communication difficulties adds so much stress and worry to a situation already loaded with anxiety.

My choices are to either move to Australia for the remainder of my treatment or try to change things here. What’s that serenity prayer… Give me the serenity to accept the things I can’t change, courage to change the things I can, and the wisdom to know the difference. Courage and wisdom, I can muster. Serenity is too tall an order for me.

Vacation to Australia

I’ll be away from my Blog for the next ten days because we’re taking a family vacation to Australia to see some very good friends.

While I’m there, I hope to get some more opinions on my cancer diagnosis so I’m taking all my scans with me. Maybe a doctor there will know of a procedure to get rid of the tumors in my lungs at least.

I’ll keep writing my Blogs but I won’t be able to post them until we get back, so stay tuned. I’ll be back in ten days!

P.S. Yes, I’m afraid that if I don’t update my Blog for too many days at a time, some of you will think my condition has deteriorated or I’ve died.

Echocardiogram Results

I had an echocardiogram yesterday and got the results today. My heart is good. My oncologist wanted me to get this test because the chemo I had last year does some damage to the heart. She’d told me I should have an echocardiogram every three months, but the first few showed no damage so I hadn’t done one since July last year.

This is an easy, non-invasive test. The technician uses an ultrasound machine (similar to the ones for pregnancy) to look at the heart’s function. Everything was normal.

My doctor also wanted me to do an echocardiogram now because she’s thinking about putting me on a new drug that has heart damage as a potential side effect. This drug is called Tykerb (Lapatinib) and it’s only been approved by the FDA in the U.S. for patients for whom Herceptin no longer works. I assume this is for cost reasons.

I’m on Herceptin now, but I think I should be on Tykerb. Herceptin IS working for me now, according to my doctor, but it doesn’t go to the brain and Tykerb does. She says that for women who are on Herceptin, 45% of the time that the cancer spreads, it spreads to the brain. That’s my biggest worry. I can handle my cancer spreading to other parts of my body, but I’d really like to keep it out of my brain for as long as possible.

Luckily, we’re in Singapore and they don’t care here what the American FDA says, so my doctor says I can have Tykerb next month when it becomes available here. That puts my mind at ease somewhat.

The goal now is to keep both my heart and brain strong and cancer-free. These are the two most important parts of the body – physically and metaphorically.

What Makes Us Irreplaceable?

This is something I wonder about because when I die, I’ll leave my kids and husband motherless and partnerless. But Tony can marry again and my kids can have a new mother.

I’d like to think nobody else could bring up my kids as well as I could. I’d like to think nobody else could make Tony as happy as I could. Actually, no I don’t. I sincerely hope there is somebody else out there who can do my job as mother and wife even better than I can, after I’m gone.

That might seem sad, but I think we’re kidding ourselves if we think we’re so special that we can’t be replaced. Everyone is replaceable. Maybe not exactly the same as the original, but passable.

But there’s one thing that makes me irreplaceable and therefore makes me sad to leave Tony and the kids behind. Nobody can love them the way I can.

I don’t mean nobody can treat them with more kindness or caring. I don’t mean nobody can make them happier, compliment them more, nag them less, buy them more toys, praise them more. Of course somebody can do all of those things better than I can. What I mean is, nobody can just LOVE them like I do.

I truly believe that no woman can know and appreciate everything about Tony the way I do. I know he’s not perfect, and maybe I do complain about and chide him for his failings a bit too much. But there are certain character traits, mannerisms, habits that most people either don’t notice or don’t appreciate as much as I do. I’m sure there are women out there who would value many aspects of Tony, and many who would even treat him better than I do. But they can’t do as good a job of just loving him for who he is.

And Josie and Toby… nobody could love them as much as I do. Not even Tony. That’s not meant to be disparaging about Tony. That’s the innate arrogance that all parents should have – because we love our kids so much, it’s just not possible for anyone else to love them as much as we do.

I’m not saying another mom couldn’t be more patient, kind, or understanding than me. Far from it, since I’m greatly lacking in the patience department, especially. But when Josie is in the middle of a tantrum, being horrible to her brother, banging on doors and screaming that she hates me… who’s going to love her then like I do? Nobody. Absolutely nobody will come close.

And that’s what makes me irreplaceable. That’s what makes us all irreplaceable to the people we love.

Keeping People Alive

Last night, I learned that one of my Dragon Boat teammates (and fellow breast cancer patient) just died. Sue found out her cancer had come back for the third time, just after I found out about my own recurrence. But she continued to paddle for the Breast Cancer Foundation Dragon Boat team because she didn’t have any symptoms. She told me she was going to miss the World Championship Regatta in Australia at the end of the month because she was flying to the U.S. for the birth of her first grandchild.

She died on the plane ride over three days ago, not from cancer, but from a blood clot that traveled from her leg to her lung.

I decided to take up Dragon Boat racing again so I went to training tonight. I kept thinking about Sue while we were paddling. And they weren’t sad thoughts. I was thinking about her counting in Spanish, about the special glasses she used to wear to keep the water from splashing in her eyes, about her coy smile and her American accented voice. All small things that made up Sue.

Then I turned to the guy next to me – an older man who has taken his wife’s place on the team since her death. I realized I didn’t know anything about him or his wife, whom I’d never met. So I asked him about her. Turns out tomorrow is the second anniversary of her death. I hope he didn’t think it was disrespectful of me, but I wanted to get to know her. I wanted to keep her alive for him too. I think he appreciated it.

I began to think about how most people live in memories. Often, they’re little, seemingly inconsequential things, not big moments in history. I wanted to keep Sue alive in my mind and picture her smile as I paddled. I wanted to keep talking about her and thinking about her even though she wasn’t with us anymore.

So as we paddled back to shore at the end of training, I began counting aloud in Spanish. In our last training session together, Sue had said, “Let’s do something different!”

I’d like people to smile and laugh when they think of me after I die, not cry and be sad. That’s something different.

Chemo Brain and Fatigue

I need to write about two side effects of cancer treatment that I’ve tried to pretend weren’t happening to me. For folks who don’t know a lot about cancer, this little primer might be helpful in understanding cancer patients. For those who know all this already, have patience. (I can still pull out the puns, chemo brain or no!)

Chemotherapy kills cells everywhere in the body. The drugs don’t zero in on just the cancer cells; it’s more like a blietzkrieg that carpet-bombs any cells that are fast-growing. Chemo kills brain cells and this leads to things like memory loss, difficulty concentrating, and slower thought processing.

This might seem like a trivial side effect compared to losing body parts and hair, but for me, this is far more serious. I can do without breasts and hair. But without the sharpness of mind, ability to multi-task, and general mental flexibility and strength, I’m not me.

And then there’s fatigue – the kind of tired you just can’t get rid of with sleep. It’s down-in-the-bones tired. I didn’t have this the first time around, but I’m feeling it now. I have to admit that there are times in the day when I just want to lie down wherever I am – on the floor in the supermarket, in the car, anywhere.

And much to my surprise and disappointment, not everyone is understanding about these sides effects. I don’t really blame them. Many people just don’t know about chemo brain and fatigue. They’re not visible like baldness and vomiting. I guess it’s my job to educate my friends and family. But the reality is, the world moves on and people will not stop their lives or be inconvenienced because I have cancer.

So to all our friends and family reading this Blog, if I forget your birthday, if I forget to turn up for your dinner party, or if I don’t seem to be listening to you while you’re talking to me, it doesn’t mean that I don’t care about you or what you have to say. It may be because I have fewer brain cells than I used to. That, or I’m actually asleep.