Tuesday, April 29, 2008

One More Moment

This weekend, we lost another friend from our Breast Cancer Foundation Dragon Boat team. Cancer didn't get her though; she was hit by a taxi. The local paper alluded to the cruel irony that she'd survived cancer, only to be killed in a road accident.

The front-page story the previous day was about an eight-year-old boy who was killed when his school minibus was hit by a car.

I've been thinking about my teammate - a smiling, strong woman who brought happiness to so many people. I've been thinking about the little boy and especially his mother, whom I don't know at all.

I haven't felt angry or frustrated about having cancer, but I'm feeling pretty upset that my teammate and even this little boy I don't even know are gone forever, and in such sudden, violent ways.

My teammate's 32-year-old son was quoted in the newspaper article saying that he wished his mother were still alive so he could make her even prouder of him. That really got to me. And I think of that little boy's mother and what I'd give, if I were her, to have my son back for even one second.

This feeling that if you could have just ONE MORE MOMENT with the person you love - for one last hug, one last kiss, one last touch, but that you'll never, ever get to have that. Ever. This must be the ultimate agony of anyone who's lost a loved one.

Many of us have friends or family we don't see for months or years at a time, but we know they're out there somewhere and we satisfy ourselves with simply knowing that they're healthy, happy, and existing. But take away the possibility of ever seeing that person again and suddenly, the finality of it can be crushing.

Of course, we can't go through life treating people the way we would if we thought we might never see them again. That's just not possible or practical. If we lived like that, we'd never let our kids out of the house because we'd be giving them their "one last hug" all day long. And I confess, I've made my kids late for school while over-kissing and over-hugging them many times.

I guess the best we can do is try to appreciate as many ONE MORE MOMENTs in our days as we can. Maybe that starts with simply recognizing these moments when we see them.

Sunday, April 27, 2008

One More Round

I've decided to try a new chemo combo: Liposomal Adriamycin + Herceptin + Tykerb. This is an unproven combination in clinical trial now in the U.S., but results won't be out for another three years. My doctor says I don't have that kind of time. So since we've run out of other options, I've decided to give this one a try.

[Correction: This new chemo combo is NOT in clinical trial after all. I got confused with something else. So I'm on my own with this one.]

Here's what I think I should be feeling and thinking: This really stinks. I'm down to the bottom of the barrel in terms of medical options. We've tried everything and these cancer cells keep coming at me. My body's tired, my mind is tired, and I don't know whether I'll be around for Toby's third birthday in July.

I just don't know why, but I'm not feeling this despair. If I were religious, I'd say it was God. One of the pain medications I'm on lists euphoria as a side effect. Maybe that's it. Physically, I'm feeling much better with the recent changes in pain medications, so maybe that's why it's easy for me to be so positive.

But I'm going to take some of the credit and say it's me. I've always prided myself on my intelligence and willpower. Nothing could get me more angry than the thought that I couldn't control myself and my world with the sheer force of my smarts and will. If I can't control this cancer, then at least I can control how I deal with it. I refuse to turn into a basket case of sorrow and pity. That would only paralyze me before the cancer got a chance. Cancer is going to get me eventually. I'm not going to help it by lying down and waiting for it.

So I'm feeling good about my decision. I'll have my next chemo on Monday. That'll be followed by more side effects and I'll probably be back to boneless chicken phase. I'm ready.

Saturday, April 26, 2008

Bad News, But Good Mood

Blood test results came back showing that my tumor markers have gone way up. That, along with my symptoms, is enough proof for my doctor that the current chemo regimen is not working, despite what yesterday's chest X-ray and liver ultrasound have shown.

One word about tumor markers. These are substances in the blood or urine that can sometimes indicate the presence of cancer. My tumor markers have been within normal limits throughout the last two years of having cancer, so I never took these markers very seriously.

I worry that so many people rely on these tumor markers to tell them that they do NOT have cancer, despite having symptoms. And they don't go for further testing that could find their cancer early.

But since my tumor markers have always been low, even while cancer was running rampant in my body, and now they've actually decided to show up on these blood tests to match what my symptoms are telling me, i.e., that my cancer is progressing, I think I can take them seriously now.

I'll see my oncologist tomorrow to discuss options for starting a new chemo regimen since this current one isn't working.

I suppose I should be devastated, or at least a bit bummed. But I'm not. I have my hubby at home, my kids are eating their dinner, my mother-in-law (from the U.S.) is in the kitchen making lasagna, and two of my dearest friends are here from Australia keeping me and my kids happy, fed, and entertained.

I'm sitting up right now, drinking tea, eating veggie sticks and chit-chatting while writing this Blog. I'm breathing just fine (yay steroids!) and my coughing and pain are down to a minimum with yesterday's boost of codeine.

I realize this news is no good and I'm running out of options and time. I'll worry about that tomorrow. For now, I'm enjoying the fruit smoothie my friend Shelly has just handed to me. Yum.

Friday, April 25, 2008

Spin Doctor

I had another chest X-ray and liver ultrasound today to see if there's any improvement in my lungs and liver since this latest chemo regimen began.

The results: No significant change in lungs or liver.

The symptoms: Increasing breathlessness and pain.

The spin: The chemo is working enough to keep the cancer from progressing, at least in the lungs and liver. So things are at least NOT getting WORSE.

The options:

1) My increasing breathlessness and pain are a bit of a mystery, perhaps one that could be cleared up with a scan more accurate than a chest X-ray or liver ultrasound. Maybe I need another PET/CT scan or even another brain MRI to see if there's any progression of the tumors in my brain. We'll get the results of a full blood test tomorrow to find out more before resuming chemo in two days (if we decide to go that way).

2) Change chemo regimen again. That would make this the fifth new chemo regimen since January this year.

3) Continue with current chemo regimen and learn to breathe less and take more pain medication.

My reaction to today's news: Disappointment that we didn't find cancer running amok all over the chest X-ray and liver ultrasound. At least THEN, we'd know what was causing this breathlessness and pain! I jest, of course. I don't like this mystery of my symptoms not being explained by these scans, but it's far better than knowing for sure that cancer has taken over my lungs and liver. So in the final analysis, I'd say this is pretty good news and I still have some options left open to me.

Maybe the sheer joy of still being alive is what's taking my breath away! Ha!

Tuesday, April 22, 2008

Panting and Popping Pills

I have a few phobias. I've always been anxious in small, confined spaces. It's a wonder I've been able to survive all the MRI, PET/CT, and bone scan machines these past two years. I think the fear of cancer left claustrophobia in the dust.

I have another, related phobia: fear of suffocation or drowning. I almost drowned as a kid - I got caught under someone else underwater in a pool and couldn't get myself above the surface. I panicked but finally made it up and was just fine, but I never forgot that feeling of struggling for air and gasping for breath. It's the worst feeling - physically and psychologically.

Last night in the shower, I felt that drowning feeling again. I had my head under the shower stream and suddenly couldn't get any air. I knew I wasn't going to drown in a shower, but it took me a while to get my breath back. I was quite surprised, and not in a good way.

This morning, I got out of bed and walked to the bathroom - about 5 meters across the floor. I was gasping for breath by the time I got to the bathroom. It felt like I was being suffocated from the inside out. I had to sit down for ten minutes to get my breath back.

I'd been getting increasingly breathless these past few weeks, but this was getting ridiculous. So off to the doctor I went.

She prescribed Dexamethasone, a steroid, to reduce the inflammation in my lungs caused by the tumors. I'm not sure about this inflammation-cancer connection, but apparently, the tumors aren't happy with just eating away at my insides. They're also causing inflammation and blocking my air passages.

My doctor also gave me Zantac to prevent ulcers in the stomach and intestines, which is a side-effect of the steroid. So I'm taking Zantac to counter the side-effects of the steroid, which is to counter the side-effect of the cancer. This is starting to sound like that song, "I know an old lady who swallowed a fly..."

After you read this, take a long, full breath of air. Feel it. Taste it. Savor it. Delicious, isn't it?

Saturday, April 19, 2008

What Makes You, YOU?

Most of us have had to describe ourselves to others at some point in our lives - maybe during a job interview ("I'm driven, conscientious, hard-working"), or perhaps even a personal ad ("I like traveling and sports and taking long walks on the beach at sunset"). We use adjectives to describe our personality traits and verbs to describe what we can do.

Here's my question to you: When you can no longer do the things you used to do, are you still the same person? If you can't do the verbs anymore, do the adjectives still apply?

Think about the things that you do day-to-day. Get up, take a shower, make breakfast for the family, get the kids ready for school, take them to school, go to work, talk to clients, go out to lunch, drive home, play with the kids, go for a run, etc. Now imagine if you couldn't do most of these things because your body won't let you. You can't drive, you can't talk, you can't romp around with your kids. You sit, you watch, you stay in the background. Are you still the same person?

Think about the adjectives you might use to describe yourself. Maybe "out-going, active, dependable, conscientious, friendly, funny". But how out-going and active would you be if you couldn't move about without coughing your lungs up? How dependable and conscientious could you be if you didn't even have the energy to make sure your kids are going to school with everything they need in their school bags? How friendly or funny would you be if you couldn't talk without panting? Would you still be the same person?

I know many of you will instinctively reach for the consoling responses: "It's who you are inside that matters; not what you can or cannot do", "Your beauty and value lie in your heart and mind, not in your body", and so on.

Let's be honest. As we get older and our physical abilities fade, we have to start removing some of those adjectives and verbs from our descriptions. Maybe you can't finish a marathon anymore because your knees are shot from too many years of running. Cross "athletic" and "can push physical limits" off your list. Maybe you can't be the fun-loving party animal you used to be because you can't stay up all night to drink and dance on bars like you used to. Cross off "youthful and carefree". Maybe you can't run around the playground with your kids anymore because you have tumors in your lungs that impede your breathing. Cross off "fun" and "involved with kids".

And then ask yourself, how many of these adjectives and verbs do you have to take away before you're no longer you?

This is not a complaint, but an observation and question I hope to hear back from you about. I still think I'm extremely lucky to have escaped some of the worst side-effects of chemo and cancer. I'm thankful every day that I can still walk, eat, and enjoy time with my kids. But I wonder just how much my body will deteriorate before I can no longer be the mother, wife, daughter, sister, friend I'd like to be?

I'd love to know what you think about this question of what makes you the person you are, and how physical limitations would change your definition of yourself. And I'm not asking for Hallmark cards here. Be honest and share your thoughts with me about YOU (not me).

Wednesday, April 16, 2008

Boneless Chicken

I have been quiet for a few days because I'm in the boneless chicken phase of my treatment, when the chemo is kicking in and the side effects result in my exerting most of my strength to hold my head up. I can completely empathize with newborn babies and their wobbly heads.

I had a few visitors today and was very pleased to be able to sit up and chat for a while. But I had to take a two-hour nap afterwards. Just like a newborn baby.

I'm just writing this to let you know that I am indeed getting your e-mails and am very eager to answer them but haven't the energy at the moment.

I'm hoping tomorrow will be a better day and I can start doing simple things again.

Sunday, April 13, 2008

Believe in Yourself!

Josie had a friend over for a play date a few days ago and they were doing jigsaw puzzles. Her friend said her puzzle was too hard. Josie cheered her on, saying, "Just believe in yourself!"

Tony and I overheard this and tried very hard not to laugh. Kids pick up one-liners from adults and plug them into their own worlds, sometimes with comic effect. Of course, for her, it wasn't for comic effect. She wanted to encourage her friend who was having trouble with her puzzle.

Yesterday, Josie and Toby were having vegetable fried rice for dinner and Toby refused to eat the vegetables. Josie said, "Toby, be a risk-taker! Try new things!"

I have to wonder how these cliches we throw at our kids translate in their minds. Cliches like, "I'll always love you" and "You're special". We tell our kids that they're unique. And they are. Just like everybody else.

What makes these everyday cliches real is the follow-through. We show our kids every day how special they are to us and how much we love them by spending time with them, hugging and kissing them, listening to them, just being there for them.

This gets to be a bit tricky if we're not around as they grow up. We just have to keep thinking of the follow-through every day to put some meat on those cliches.

I have to believe what I'll leave behind for them - the memories, the journals, the stories - will be enough of a follow-through. I have to take Josie's advice and just believe in myself.

Saturday, April 12, 2008

Chemo Update

I had a blood check today and all my counts were good. My doctor said the tumors on my collarbone seem to have shrunk and the other bumps and lumps around my chest seem to have "not gotten worse". All this is from just feeling the skin's surface.

For a better look at how this chemo's working, I'll have a chest X-ray on the 24th, just before my next dose of chemo is due. If the tumors in my lungs have shrunk, we'll go ahead with another cycle of the Liposomal Adriamycin, plus Herceptin which we added to the mix for my last dose. The Adriamycin didn't seem to be doing much on its own so we added the Herceptin again. So technically, this is my sixth chemo regimen in two years.

I've been on continuous pain medication now for over a week, so I'm not feeling much pain, only tightness in the chest when I breathe in deeply. I'm still coughing and losing my breath when I exert my lungs in any way.

I asked my doctor again about the tumors in my brain and whether we should be doing something about them. She said they're easier to take care of than the lungs and she's mostly worried about the tumors in my lungs, even more so than the liver, which had several tumors the size of golf balls the last time we checked.

It seems to me that dying of cancer in the lungs would be the least painful way to go, compared to cancer in the brain, liver, or bones. I imagine I'd just run out of breath one day and slip peacefully away. But it probably doesn't work that way.

Friday, April 11, 2008

Want to Live Longer? Earn It.

I just read this story in The New Yorker magazine about the ultimate competition in life: longevity. Our lives are a series of competitions - what schools we get into, what job titles we have, how much money we make, how much money our kids make, who has the biggest house, the fastest car, the sexiest trophy wife. And then as we near the end of our lives, we can proudly proclaim, "I'll be turning 80 this year and look at me still swinging a golf club!"

It raised some strong emotions in me, for obvious reasons. I'm 41 and have late-stage cancer. Statistically, I won't be alive in a few months' time. When I hear about 80-year-olds wanting to live longer, I can't help feeling these people are just plain greedy.

I haven't done anything worth putting in an obituary during my 41 years on this Earth. I was a schoolteacher but never won a "Best Teacher" award. I was a journalist but never won a Pulitzer. I didn't save anyone's life. I didn't invent anything or create anything. Unless you count my kids. And anybody with healthy ovaries and a willing partner can do that.

So why do I deserve to live another ten or twenty years? I'd have to say that I don't. But my kids deserve to have a mother for another ten or twenty years. They deserve to have me live for them.

I think people who want to live longer should earn it. Don't just ask for more time if you're not going to do something with that time. I don't think turning 80 and still having the strength to finish a round of golf is something to aspire to.

I don't mean we have to win a Nobel Prize or give up our place on Earth to someone else who will. There are other ways to earn the right to live. Yes, that's what I meant. We all have the right to live. Just like animals. But let's be better than animals. Let's strive to do something with our lives so that we actually deserve to have that right. It could be as grand as finding the cure for cancer. Or it could be as simple as bringing joy and laughter to somebody suffering from cancer.

I have a friend who's had an impressive career. She was the executive producer of two of the top-rated TV news shows in the U.S. There will be no shortage of impressive labels to put into her obituary. But I don't think she earned her right to live with those high-profile jobs. I think she did it with what she's doing now, working for an NGO that's training the poorest and most hopeless people in Africa and Asia to feed and heal themselves. The work she's doing now is saving lives. One of her equals hundreds, maybe thousands of people who might otherwise be dead. That's simple math. She's earned her right to be here.

I know a number of people in their seventies and eighties who, like me, are not going to win a Nobel Prize. But they've taught me and their own children and grandchildren lessons in life that can't be measured in dollars, and they've brought me and others joy and happiness that can't be tallied up in a column. There are no awards or prizes for the value they've brought to my life or the lives of others they've touched. But they've earned their right to be here.

Given that I might have months to live, I'm under a bit of pressure to earn whatever time I have left. But I'd like to think I'm doing it now. I'm doing it by staying strong and positive for my family and friends. I'm doing it by not succumbing to sorrow or pity for myself. I'm doing it by bringing as much joy and laughter as I can to the people who care about me in whatever small ways I can find. And, in the end, I hope I earn my remaining months or years of life by being an example to my family, friends, and most important, to my children. Because frankly, it's a little late for me to be gunning for that Pulitzer.

Tuesday, April 8, 2008

More Fun Than People

Some of you have told me you get worried when I don't update my Blog for a while. I try not to post a Blog entry if I don't have anything new to report. There's no point in saying anything if I have nothing to say. But at this stage of my cancer, no news could be construed as bad news, so I'll just write a quick note to explain that I've been too busy to update my Blog these past few days.

I've had a number of overseas visitors, including two friends from university (from 23 years ago!), an ex-colleague from Hong Kong, two friends from Australia and my sister from the U.S. I've been spending time with my friends, watching my past and present mingle, and hearing everyone swap stories.

Yesterday, there were ten of us gathered together, friends spanning the last two decades of my life, eating, drinking wine, and laughing. It occurred to me what a rare and lucky treat it was to see so many of the important people in my life together in one room having such a great time.

I've also been laughing so much these past few days that my sides have been hurting. I've had to double up on the pain medication, but I don't mind. The idea that I might die laughing is cause for even more laughter.

My sister just left this morning so I might get some relief. I don't know anyone who laughs as much as she does. She'll recycle a joke over and over again and laugh harder each time she tells it. When we were kids, we used to say to each other, "We have more fun than people."

These past few days, I've been having more fun than people.

Saturday, April 5, 2008

I'm Back!

During the last two years of cancer treatment, many people told me how brave, positive, and inspiring I was. But I said it was easy enough to be brave and optimistic because I wasn't feeling the severe side effects that some of my fellow cancer patients were suffering. I said, "Let's see how perky I am when I'm dead tired, in pain, and vomiting all day and night."

Well, I got a taste of that during the last few weeks. I have to admit I wasn't very cheerful or inspiring. There were moments of frustration and weakness. I was so physically weak, I felt useless as a parent, friend, human being. The things that make me who I am were gone - my sense of humor, my energy, my brain.

I couldn't participate in a conversation, let alone make anyone laugh or bring anything positive to somebody's day. I was frustrated that I couldn't talk - talking led to breathlessness, panting, coughing, and in the last few days, an intense pain in my chest. I didn't like sitting among people, unable to contribute anything, having to allow people to speak for me or do things for me. I felt like an invalid. A voiceless, powerless, personality-less invalid. Not fun to be around.

After one particularly difficult day, I sat down with a friend in a cafe - an outing to cheer me up by giving me back some semblance of a normal life. She had to order for me, pick up the fork I dropped, get up to get me a napkin, even cut up my food and put mouthfuls on my fork for me. I told her, "I think this is the beginning of me doing all the taking and having nothing to give. I'm sorry I won't be much fun to be with from here on." That was a tough thing to admit.

It was tougher to see how my deteriorating condition affected the people around me. Family and friends who had seen me smiling, laughing, joking my way through cancer for the past two years suddenly saw me sitting in bed, head propped up by pillows, tubes in my nose, coughing, gagging, and holding my torso in pain. And when they offered help, I could only snap at them in frustration or dismiss their futile attempts to help me.

The pain got to be too much, so I finally gave in and started on pain medication yesterday. It's working wonders. Today, I felt better than I have in over two weeks. I had the second dose of my new chemo drug this morning and I spent this entire afternoon marveling at how great I felt. The coughing, breathlessness, and chest pain were almost all gone. I ran up an entire flight of stairs two steps at a time, when simply walking up five steps just a few days ago left me completely winded and coughing.

The best thing about this revival in me is the way it's affecting my family and friends. I had left a trail of sad, upset, disheartened people in the wake of my frailty these past few weeks. Today, they were even more pleased than I was that I and my smile were back.

Cancer isn't a solo journey. I'm taking a lot of people on this trip with me, whether I like it or not. I've got to be careful not to take us too low. And those of you who know and care about me... you should know that you may not be able to take away my pain, discomfort, or sadness, but your very existence in my life is something to keep me going.