During my first year living with cancer, I said I'd prefer to die a sudden death - hit by lightning, a bus, a meteorite. Anything but the drawn-out agony of knowing I'm going to die of this disease but without knowing exactly how, when, or where.
I've since changed my mind about that.
A good friend of mine just lost a friend quite suddenly. Her friend had a headache, took some pain reliever, and went to sleep. He never woke up. He left behind three young children, a wife, a brother, a mother, and many, many friends who are still reeling from the shock. If I were his wife, how would I explain to my kids how their daddy died?
When the head investigator on the TV show, CSI, was asked how he'd like to die, he said cancer. Here's a guy whose job it is to dissect the many different ways of dying (albeit in a TV show), and he'd rather die of cancer than of a bullet wound, heart attack, stroke, stabbing, poisoning, drug overdose, car accident, or the myriad other ways that we can shuffle off this mortal coil.
Why? Why would anybody want to die of cancer - the toxic drugs you have to take with its debilitating side effects, the surgery and accompanying pain and discomfort of recovery, radiation that's supposed to kill cancer cells but puts you at risk for more cancer. And that's just the physical side. What about the emotional and mental stress of having the cancer cloud hanging over your life, obscuring any future you might dream about?
My answer to that is, knowledge. I'm a big fan of knowing as much as I can about me, my world, my life, my death. I don't want to be the last one to know about my death. I want to know ahead of time, and I want as much control over it as I can have.
I think cancer gives me the luxury of preparing myself and the people I care about. It gives me time to think about my life and to enjoy the time I have left.
We all have to die of something. I choose cancer.
Sunday, March 30, 2008
Thursday, March 27, 2008
How Am I Feeling?
I had a blood count yesterday, one week after my first dose of the new chemo regimen. All my counts were good, so it looks like the new chemo's not as damaging to my blood as the last one was. My doctor says it's too early to tell whether it's working or not. I thought the big bump under my collarbone was a bit smaller, but she was still able to see it protruding. The other bumps are still there and the red splotch in the center of my chest is a bit bigger - about 9 millimeters across and raised about one millimeter above the skin's surface.
People keep asking me how I'm feeling. Weak. Weak and tired. A seven-year-old girl beat me at push-ups. She did five; I couldn't even do ONE. I have trouble blowing out a candle. I can't walk up five steps without getting breathless. My neck feels so weak at times, I feel like a newborn baby that can't hold its head up. It takes me over an hour to finish a meal sometimes because I'm just too weak to eat. That sounds just plain silly, but I get physically tired while eating. And if I push it, I start to cough and then I can't talk or breathe, let alone eat.
Last Sunday, some friends took me to my favorite brunch at the Ritz Carlton Hotel. It had all my fantasy foods: fresh Belon oysters, REAL caesar salad, foie gras (very un-P.C.!), grilled lamb chops, a huge selection of cheeses, chocolate mousse, creme brulee, and champagne. I went completely off my diet and had everything except the champagne. But even then, I sat there for three hours and managed no more than a few mouthfuls of each item.
For the last week or so, I've had muscle aches throughout my upper torso, arms, and legs. My doctor says this is because I've lost so much weight, the fat and muscle that normally pad the vertebrae have thinned out, and that, coupled with the natural wearing out of the discs, is putting added pressure against the nerves along my spine.
That's the physical part. The other bits? I feel surprised, annoyed, a little alarmed. I'm surprised that eating can be so hard. I'm annoyed that I can't just make my body do the things it used to. I'm alarmed that I might die like an elephant. Elephants have no natural predator because of their sheer size and their thick skin, which even a lion's claws and teeth can't penetrate. So unless they're killed by man, they die of starvation because the muscles in their trunks slowly waste away and they can't bring food or water to their mouths.
Sitting in front of a TV and snacking on fatty foods all day might be some people's idea of a good time, but for me, it's a punishment. I'd give anything to be able to go for a run right now. I have too many things to do and not enough time, so I can't just sit and rest. And I don't want to eat sugary dairy and animal protein foods because they'll only help my cancer cells thrive. But I've got to fatten myself up or there won't be much of me left for the cancer cells to get to.
It had never even occurred to me that starving to death could be a side effect of cancer. This disease is just full of surprises.
People keep asking me how I'm feeling. Weak. Weak and tired. A seven-year-old girl beat me at push-ups. She did five; I couldn't even do ONE. I have trouble blowing out a candle. I can't walk up five steps without getting breathless. My neck feels so weak at times, I feel like a newborn baby that can't hold its head up. It takes me over an hour to finish a meal sometimes because I'm just too weak to eat. That sounds just plain silly, but I get physically tired while eating. And if I push it, I start to cough and then I can't talk or breathe, let alone eat.
Last Sunday, some friends took me to my favorite brunch at the Ritz Carlton Hotel. It had all my fantasy foods: fresh Belon oysters, REAL caesar salad, foie gras (very un-P.C.!), grilled lamb chops, a huge selection of cheeses, chocolate mousse, creme brulee, and champagne. I went completely off my diet and had everything except the champagne. But even then, I sat there for three hours and managed no more than a few mouthfuls of each item.
For the last week or so, I've had muscle aches throughout my upper torso, arms, and legs. My doctor says this is because I've lost so much weight, the fat and muscle that normally pad the vertebrae have thinned out, and that, coupled with the natural wearing out of the discs, is putting added pressure against the nerves along my spine.
That's the physical part. The other bits? I feel surprised, annoyed, a little alarmed. I'm surprised that eating can be so hard. I'm annoyed that I can't just make my body do the things it used to. I'm alarmed that I might die like an elephant. Elephants have no natural predator because of their sheer size and their thick skin, which even a lion's claws and teeth can't penetrate. So unless they're killed by man, they die of starvation because the muscles in their trunks slowly waste away and they can't bring food or water to their mouths.
Sitting in front of a TV and snacking on fatty foods all day might be some people's idea of a good time, but for me, it's a punishment. I'd give anything to be able to go for a run right now. I have too many things to do and not enough time, so I can't just sit and rest. And I don't want to eat sugary dairy and animal protein foods because they'll only help my cancer cells thrive. But I've got to fatten myself up or there won't be much of me left for the cancer cells to get to.
It had never even occurred to me that starving to death could be a side effect of cancer. This disease is just full of surprises.
Monday, March 24, 2008
A Bad Day
Yesterday was a bad day. I spent most of the day being crabby, snappy, sarcastic, frustrated, and impatient.
Every little thing ticked me off. The kids were too loud, too whiny, too bratty. They complained about their dinner. "Let's see what happens if I don't feed you for two days straight. Let's see if you get picky about your food then!"
I tried to order groceries online but had to phone the shop to have a lady tell me I had to go to the store to see what they had before I could order online. "I CAN'T go down to the shop. That's why I want to order ONLINE!"
My doctor's office called to see what time I wanted my blood test next week. "Blood test? What blood test? Nobody told me about a blood test. It would have been nice if somebody had mentioned this to me the last time I was in your office."
"Who made this mess in the playroom?! Who spilled this milk on the floor?! Who said you could have that candy?!"
And for the finale... I told Toby he couldn't have milk before bedtime and he exclaimed, "It's not fair!"
"FAIR?!?! You want to talk about what's FAIR?! What do YOU know about FAIR?!" Toby's just two and a half years old.
As I was putting the kids to bed, I said to Josie, "I had a bad day today, didn't I? I was in a bad mood all day and got cranky with you and Toby. I'm sorry."
Josie, with her innocent forgiving heart that just GETS me, said, "That's okay mommy. It wasn't your fault." What was she thinking? Did she think the cancer was getting to me? That I was so crabby because I wasn't feeling well and the coughing and breathlessness was making me irritable? I lay next to her in her bed for a few minutes thinking about this.
And then I had my first moment of clarity all day. "Josie, do you think it wasn't my fault for being cranky because you were being naughty and that put me in a bad mood?"
"Yes," she said.
"Josie, you might be naughty but that doesn't mean it's your fault that I'm in a bad mood. If I'm in a bad mood, it's my fault and nobody else's. You can do all the naughty things you want, but I'm the one who decides whether that's going to put me in a bad mood or not. I can't blame that on anyone else."
She said, "Okay", and gave me a big hug. And I felt happy with myself for the first time all day because I was finally acting like the grown-up.
Every little thing ticked me off. The kids were too loud, too whiny, too bratty. They complained about their dinner. "Let's see what happens if I don't feed you for two days straight. Let's see if you get picky about your food then!"
I tried to order groceries online but had to phone the shop to have a lady tell me I had to go to the store to see what they had before I could order online. "I CAN'T go down to the shop. That's why I want to order ONLINE!"
My doctor's office called to see what time I wanted my blood test next week. "Blood test? What blood test? Nobody told me about a blood test. It would have been nice if somebody had mentioned this to me the last time I was in your office."
"Who made this mess in the playroom?! Who spilled this milk on the floor?! Who said you could have that candy?!"
And for the finale... I told Toby he couldn't have milk before bedtime and he exclaimed, "It's not fair!"
"FAIR?!?! You want to talk about what's FAIR?! What do YOU know about FAIR?!" Toby's just two and a half years old.
As I was putting the kids to bed, I said to Josie, "I had a bad day today, didn't I? I was in a bad mood all day and got cranky with you and Toby. I'm sorry."
Josie, with her innocent forgiving heart that just GETS me, said, "That's okay mommy. It wasn't your fault." What was she thinking? Did she think the cancer was getting to me? That I was so crabby because I wasn't feeling well and the coughing and breathlessness was making me irritable? I lay next to her in her bed for a few minutes thinking about this.
And then I had my first moment of clarity all day. "Josie, do you think it wasn't my fault for being cranky because you were being naughty and that put me in a bad mood?"
"Yes," she said.
"Josie, you might be naughty but that doesn't mean it's your fault that I'm in a bad mood. If I'm in a bad mood, it's my fault and nobody else's. You can do all the naughty things you want, but I'm the one who decides whether that's going to put me in a bad mood or not. I can't blame that on anyone else."
She said, "Okay", and gave me a big hug. And I felt happy with myself for the first time all day because I was finally acting like the grown-up.
Wednesday, March 19, 2008
New Chemo, New Hope
Yesterday, I had my first dose of chemo regimen number five. My blood count and echocardiogram were good (yay!), so I was able to start chemo straight away.
This new chemo drug I'm getting, Liposomal Adriamycin, is from a family of drugs I haven't tried yet, mostly because they're cardio-toxic, especially in combination with Herceptin, which I was on for a year. Liposomal Adriamycin is the same as traditional Adriamycin, but is delivered in a way that is less toxic to the heart. It's much more expensive but given the risks I may be averting, it could be worth the trade-off. It sounds to me like this could be the drug that works. I have a good feeling about it.
Meanwhile, I've discovered a red dot on the skin in the middle of my chest, right on the sternum. The dot was about two millimeters wide when I first noticed it a few days ago. I thought it might just be skin irritation from the button on my shirt or something that hit me there. But today I noticed the dot had gotten a few millimeters wider and is slightly raised on the surface of the skin.
This is similar to the dot that appeared on my right chest where the biopsy needle went in when I was first diagnosed with cancer two years ago. At that time I pointed the red dot out to my surgeon and he said it was not cancer-related. Two weeks later, that dot was a red lump. A biopsy of that lump showed it was cancer and I had to have that surgically removed.
Also, the little lump near the red dot that I discovered yesterday felt a bit bigger today. It's pretty scary how fast this cancer seems to be growing - so fast that I can feel and see the difference from one day to the next, and all this with the naked eye and my fingers tips.
I'll keep a close eye on my lumps and that red skin dot and watch for evidence of this new chemo working. The good news is, I won't have to spend thousands of dollars on scans to see if the chemo is working. I can just look down and feel the lumps with my fingers. I'm not due for another dose for three weeks, so self-examination will be very important on this new chemo schedule.
This new chemo drug I'm getting, Liposomal Adriamycin, is from a family of drugs I haven't tried yet, mostly because they're cardio-toxic, especially in combination with Herceptin, which I was on for a year. Liposomal Adriamycin is the same as traditional Adriamycin, but is delivered in a way that is less toxic to the heart. It's much more expensive but given the risks I may be averting, it could be worth the trade-off. It sounds to me like this could be the drug that works. I have a good feeling about it.
Meanwhile, I've discovered a red dot on the skin in the middle of my chest, right on the sternum. The dot was about two millimeters wide when I first noticed it a few days ago. I thought it might just be skin irritation from the button on my shirt or something that hit me there. But today I noticed the dot had gotten a few millimeters wider and is slightly raised on the surface of the skin.
This is similar to the dot that appeared on my right chest where the biopsy needle went in when I was first diagnosed with cancer two years ago. At that time I pointed the red dot out to my surgeon and he said it was not cancer-related. Two weeks later, that dot was a red lump. A biopsy of that lump showed it was cancer and I had to have that surgically removed.
Also, the little lump near the red dot that I discovered yesterday felt a bit bigger today. It's pretty scary how fast this cancer seems to be growing - so fast that I can feel and see the difference from one day to the next, and all this with the naked eye and my fingers tips.
I'll keep a close eye on my lumps and that red skin dot and watch for evidence of this new chemo working. The good news is, I won't have to spend thousands of dollars on scans to see if the chemo is working. I can just look down and feel the lumps with my fingers. I'm not due for another dose for three weeks, so self-examination will be very important on this new chemo schedule.
Tuesday, March 18, 2008
Strike Three!
My blood counts were too low for chemo again yesterday, so that's it for this chemo combo. It looks like it's too toxic and I can't stay on it, so we have to change drugs again. Today, I'll start my fifth chemo regimen since January 2006. It looks like we're going with Liposomal Adriamycin.
I also had a chest X-ray and liver ultrasound. The radiologist and my oncologist both said there was no change from the last X-ray, but to my untrained eye, the lungs looked a tad worse.
The liver ultrasound showed seven tumors, three of them measuring more than three centimeters. My last liver ultrasound on February 25 showed five spots, only one of which was larger than three centimeters. This was evidence enough that the Gemcitabine + Cisplatin chemo wasn't working.
During the liver ultrasound, as I was lying on the examination slab, I felt four bumps on my chest: 1) a small one in the center of my sternum, about 3 millimeters wide, 2) a larger one (about one cm) toward the top of my sternum, near the spot where the skin cancer was after the core needle biopsy, 3) large one under right collarbone, about one or two cm, and 4) small one under left collarbone, less than one cm. This was the most alarming evidence of all. These tumors are getting so big, I can actually feel them. The large one near the skin lesion is so big, we can even see the bump on the skin's surface.
I got a G-CSF shot to boost my white blood cell count yesterday, so I should be okay to start my new chemo regime today. But first, I need to have an echocardiogram to see if my heart can take it. Some of these drugs I've been on are toxic to the heart.
I'm pretty sure my heart can take it, both literally and figuratively.
I also had a chest X-ray and liver ultrasound. The radiologist and my oncologist both said there was no change from the last X-ray, but to my untrained eye, the lungs looked a tad worse.
The liver ultrasound showed seven tumors, three of them measuring more than three centimeters. My last liver ultrasound on February 25 showed five spots, only one of which was larger than three centimeters. This was evidence enough that the Gemcitabine + Cisplatin chemo wasn't working.
During the liver ultrasound, as I was lying on the examination slab, I felt four bumps on my chest: 1) a small one in the center of my sternum, about 3 millimeters wide, 2) a larger one (about one cm) toward the top of my sternum, near the spot where the skin cancer was after the core needle biopsy, 3) large one under right collarbone, about one or two cm, and 4) small one under left collarbone, less than one cm. This was the most alarming evidence of all. These tumors are getting so big, I can actually feel them. The large one near the skin lesion is so big, we can even see the bump on the skin's surface.
I got a G-CSF shot to boost my white blood cell count yesterday, so I should be okay to start my new chemo regime today. But first, I need to have an echocardiogram to see if my heart can take it. Some of these drugs I've been on are toxic to the heart.
I'm pretty sure my heart can take it, both literally and figuratively.
Sunday, March 16, 2008
Sign from God?
I had a strange vision last night - a vision rather than a dream, since I was awake.
I saw a stack of papers - documents, research papers, articles - on a little table next to my bed. (The little table was real, the stack of papers was not.) The pile of papers was about one meter high. It wasn't a neatly stacked pile of papers with the sheets nicely lined up at the edges. Instead, it was quite messy and chaotic looking, with corners sticking out here and there.
The image and background were in black-and-white, but there were three sheets of paper in the pile that stood out because they were purple - one near the top of the stack, one in the middle, and one near the bottom. These three purple documents were scientific articles about a drug called Femara, which has recently been in the news because new research has shown that the drug can cut the risk of breast cancer returning by 61 percent.
I should put this vision into context. I'm currently on my fourth round of chemotherapy since I was first diagnosed just over two years ago. After the first course, I was cancer-free for ten months, or so I thought. Then I had a recurrence (chest wall, lungs, sternum) and began my second round of chemo with a new set of drugs.
After four months on this new chemo regime, we found my cancer had spread to my liver. That led to my third round of chemo with yet another set of drugs. After just one month of this round, we discovered that the cancer had spread to my brain and further into my liver, lungs, and bones. Now we're trying out a fourth set of drugs, but we don't know whether it's working or not because it's too soon to tell.
This is the dilemma I'm in now: It might take up to two months to know whether or not this new chemo regimen is working, but if it's NOT working, then the cancer could get me during that time. So while we're in the process of figuring out what might keep me alive a little longer, I could die.
You can see why I and my network of friends have been trolling the Internet for the past few weeks looking for information on the various chemo drugs out there. I have piles of research at home, hence, this vision I had. The chaotic and disorganized state of the pile of papers in my vision reflects the confusion and mess of all the research I've been wading through.
Maybe this vision is telling me that in the midst of all that mess lies the answer to my cure: the three purple papers about Femara. Maybe this is God's way of telling me that Femara is the drug that will save me. (Maybe God doesn't know that PINK is the color of breast cancer, not purple.)
Luckily, I have enough sense not to believe in visions. Femara is a drug that works for breast cancer tumors that are hormone-receptor-positive. My cancer is hormone-receptor-negative. Think how dangerous it would be if I foolishly ignored this fact and went along with my vision and switched to Femara. I doubt any doctor would allow it anyway.
So much for visions and signs from God. You can see why, if I had a vision of an old man in a white beard and flowing robe, I'd be more likely to believe it was Colonel Sanders in pajamas than believe it was God.
I saw a stack of papers - documents, research papers, articles - on a little table next to my bed. (The little table was real, the stack of papers was not.) The pile of papers was about one meter high. It wasn't a neatly stacked pile of papers with the sheets nicely lined up at the edges. Instead, it was quite messy and chaotic looking, with corners sticking out here and there.
The image and background were in black-and-white, but there were three sheets of paper in the pile that stood out because they were purple - one near the top of the stack, one in the middle, and one near the bottom. These three purple documents were scientific articles about a drug called Femara, which has recently been in the news because new research has shown that the drug can cut the risk of breast cancer returning by 61 percent.
I should put this vision into context. I'm currently on my fourth round of chemotherapy since I was first diagnosed just over two years ago. After the first course, I was cancer-free for ten months, or so I thought. Then I had a recurrence (chest wall, lungs, sternum) and began my second round of chemo with a new set of drugs.
After four months on this new chemo regime, we found my cancer had spread to my liver. That led to my third round of chemo with yet another set of drugs. After just one month of this round, we discovered that the cancer had spread to my brain and further into my liver, lungs, and bones. Now we're trying out a fourth set of drugs, but we don't know whether it's working or not because it's too soon to tell.
This is the dilemma I'm in now: It might take up to two months to know whether or not this new chemo regimen is working, but if it's NOT working, then the cancer could get me during that time. So while we're in the process of figuring out what might keep me alive a little longer, I could die.
You can see why I and my network of friends have been trolling the Internet for the past few weeks looking for information on the various chemo drugs out there. I have piles of research at home, hence, this vision I had. The chaotic and disorganized state of the pile of papers in my vision reflects the confusion and mess of all the research I've been wading through.
Maybe this vision is telling me that in the midst of all that mess lies the answer to my cure: the three purple papers about Femara. Maybe this is God's way of telling me that Femara is the drug that will save me. (Maybe God doesn't know that PINK is the color of breast cancer, not purple.)
Luckily, I have enough sense not to believe in visions. Femara is a drug that works for breast cancer tumors that are hormone-receptor-positive. My cancer is hormone-receptor-negative. Think how dangerous it would be if I foolishly ignored this fact and went along with my vision and switched to Femara. I doubt any doctor would allow it anyway.
So much for visions and signs from God. You can see why, if I had a vision of an old man in a white beard and flowing robe, I'd be more likely to believe it was Colonel Sanders in pajamas than believe it was God.
Thursday, March 13, 2008
Chemo Delayed Again
Strike Two! My blood counts were too low for chemo again.
The white blood cell count was way up, thanks to the injection I got two days ago, but my platelet count was the lowest it's ever been. Platelets are necessary for blood clotting - too low means your blood doesn't clot and you can bleed to death. Too high means your blood clots too much and obstructs blood flow (e.g. Deep Vein Thrombosis).
The normal range is 150 - 400 and mine was 82. That's an F. On the other hand, my white blood count comes out to an A++.
My doctor has concluded that I can't stay on this chemo schedule: weekly for 3 weeks, rest 1 week, then repeat. Now we're going to try weekly for 2 weeks, rest 1 week, repeat. I'll still be getting the same total amount of the chemo drugs (Gemcitabine + Cisplatin + Tykerb) over the 12-week period, but the dosage will be divided up differently.
So I go back next Monday to try again.
The good news is, my doctor says all of the symptoms I've been experiencing in the past week are side effects of the chemo, rather than indications that the cancer is spreading. These symptoms include headaches, ear aches, high-pitched sound in my ear, nausea, pain in chest, tightness on my right side.
Again, I should be worried, but I'm not. In fact, it was kind of nice. Instead of spending two and a half hours hooked up to an IV, I got to go out for lunch with my chemo buddy du jour. Not a bad deal.
The white blood cell count was way up, thanks to the injection I got two days ago, but my platelet count was the lowest it's ever been. Platelets are necessary for blood clotting - too low means your blood doesn't clot and you can bleed to death. Too high means your blood clots too much and obstructs blood flow (e.g. Deep Vein Thrombosis).
The normal range is 150 - 400 and mine was 82. That's an F. On the other hand, my white blood count comes out to an A++.
My doctor has concluded that I can't stay on this chemo schedule: weekly for 3 weeks, rest 1 week, then repeat. Now we're going to try weekly for 2 weeks, rest 1 week, repeat. I'll still be getting the same total amount of the chemo drugs (Gemcitabine + Cisplatin + Tykerb) over the 12-week period, but the dosage will be divided up differently.
So I go back next Monday to try again.
The good news is, my doctor says all of the symptoms I've been experiencing in the past week are side effects of the chemo, rather than indications that the cancer is spreading. These symptoms include headaches, ear aches, high-pitched sound in my ear, nausea, pain in chest, tightness on my right side.
Again, I should be worried, but I'm not. In fact, it was kind of nice. Instead of spending two and a half hours hooked up to an IV, I got to go out for lunch with my chemo buddy du jour. Not a bad deal.
What To Expect
When I was pregnant with Josie, I read every baby book on the market, starting with the mother of all baby books (sorry about the pun), "What To Expect When You're Expecting".
I think somebody ought to write a book, "What To Expect When You're Expecting... To Die". I'd like to have some idea of what I'm facing. I'd like the blow-by-blow details of what will happen to my body physically, whether I'll have control over my body, my speech, my mind. I'd like to know whether I'll be lucid enough with all the pain medication I'll be on, to talk to Tony and the kids.
Which organs will shut down first - lungs? Liver? And what will each feel like? If the lungs start to fail, will I be put on a respirator? Is this when I sign a DNR (Do Not Resuscitate) order so they can pull the plug on me? If it's the liver that goes first, how long will that process take before the rest of my body gives in? And during that period, will I be able to talk to and see my kids? So many questions.
Some people might call this morbid curiosity, but I'm trying to find the best way to minimize the trauma to Tony and the kids. I don't want them to see me at the end looking like a sack of skin and bones that can't talk, smile, or breathe on her own. I don't want them to see me in pain. In order to make this as painless as possible for Tony and especially the kids, I need to plan ahead and to do this, I need some details.
If any of you have been there at the end of someone's life - someone who died of cancer - please feel free to share your story with me. I'd like to know what it feels like from the caregiver's point of view. I know there's information out there on the Internet and in books, but I think the best information comes from other people who have personally experienced it.
I think somebody ought to write a book, "What To Expect When You're Expecting... To Die". I'd like to have some idea of what I'm facing. I'd like the blow-by-blow details of what will happen to my body physically, whether I'll have control over my body, my speech, my mind. I'd like to know whether I'll be lucid enough with all the pain medication I'll be on, to talk to Tony and the kids.
Which organs will shut down first - lungs? Liver? And what will each feel like? If the lungs start to fail, will I be put on a respirator? Is this when I sign a DNR (Do Not Resuscitate) order so they can pull the plug on me? If it's the liver that goes first, how long will that process take before the rest of my body gives in? And during that period, will I be able to talk to and see my kids? So many questions.
Some people might call this morbid curiosity, but I'm trying to find the best way to minimize the trauma to Tony and the kids. I don't want them to see me at the end looking like a sack of skin and bones that can't talk, smile, or breathe on her own. I don't want them to see me in pain. In order to make this as painless as possible for Tony and especially the kids, I need to plan ahead and to do this, I need some details.
If any of you have been there at the end of someone's life - someone who died of cancer - please feel free to share your story with me. I'd like to know what it feels like from the caregiver's point of view. I know there's information out there on the Internet and in books, but I think the best information comes from other people who have personally experienced it.
Wednesday, March 12, 2008
Photos
Last Friday, a professional photographer came to my house to do some portrait photos - a very generous gift from a friend. These photos were meant to be a gift to my children after I'm gone, but my husband has told me to post them on my Blog to show other women with chemo-bald heads that they can still look great. And I always do what my husband tells me to do (chuckle, chuckle).
The photographer is Phil Date, based in Singapore. Very easy-going, funny guy.
phildate@gmail.com
Mobile phone: +65 9848-3907
Tuesday, March 11, 2008
Chemo Update
My blood counts were too low today for chemo, so I got a G-CSF (white blood cell booster) shot instead of chemo. Unlike previous blood count lows that involved just the white blood cells, ALL the counts were down today: white, red, hemoglobin, and platelet.
I don't actually mind today's little hiccup because I got out of the house, walked around a bit, had a nice lunch with two handsome men (husband and father-in-law), and am now relaxing with a cup of tea. And despite what the blood counts say, I'm feeling pretty good.
I'll try again on Wednesday.
I don't actually mind today's little hiccup because I got out of the house, walked around a bit, had a nice lunch with two handsome men (husband and father-in-law), and am now relaxing with a cup of tea. And despite what the blood counts say, I'm feeling pretty good.
I'll try again on Wednesday.
Monday, March 10, 2008
What Causes Cancer?
If you thought the God Blog entries were controversial, this one's going to cause an even bigger stir.
I hesitated writing anything about this topic for a number of reasons:
- This is mostly based on my own untrained, uneducated research from the Internet, books, and medical or scientific research papers, all of which are rife with misleading information, hidden agendas, and incorrect or contradictory "facts".
- Some of my understanding of these issues might just be PLAIN WRONG. Please correct me if you think I'm wrong.
- I don't necessarily believe all of this stuff, but am taking the "better safe than sorry" approach. Wimpy, I know.
- I don't want to impose my opinions on other people. I used to laugh at vegetarians, especially those who got all preachy about the evils of eating meat. Man has been eating meat for thousands of years. How can meat be bad for our health?
- I don't want people to start tossing out everything in their kitchen cupboards and bathroom cabinets on the basis of what they read here, without doing their own research and making informed choices appropriate to their lifestyles. Some of this information calls for DRASTIC changes in your life, many of which are logistically impossible, financially crippling, or just plain stress-inducing. And there's STILL NO GUARANTEE that any of these changes will prevent you from getting cancer.
I've finally decided to write about this because:
- People keep asking me to do it. Many of you are concerned about health issues but are too busy with work, family, and life to do the research. I used to be too busy as well, until keeping myself alive became a full-time job.
- People want to know why I have cancer when I'm in such a low-risk category.
- I've had genetic testing done and I do NOT have the breast cancer gene mutations. So people want to know why I have breast cancer, and such an aggressive form of it, when I don't have the gene mutations that cause breast cancer.
This is some of what I’ve learned about cancer, particularly breast cancer, in the past two years since I was diagnosed:
Only 5 – 10 percent of ALL cancers are hereditary. That means the other 90 – 95 percent are due to lifestyle, environmental factors, or just bad luck. Don’t confuse “hereditary” with “genetic”. ALL cancers are genetic, i.e., caused by genetic mutations. A cancer is considered hereditary when this genetic mutation is inherited.
There are thousands, probably millions of factors that INCREASE your risk for cancer, but no SINGLE, direct cause. In the case of breast cancer, most of these factors are out of our control: being female, menstruating at an early age, having a first-degree relative with breast cancer. But some of these factors ARE under our control, albeit to a limited extent: diet, exercise, level of exposure to carcinogenic substances and other toxins.
Maintaining an ultra-healthy lifestyle and living in a protective bubble STILL doesn't mean you won't get cancer. Christopher Reeve's wife didn't smoke and she died of lung cancer. I have friends who've been smoking a pack a day for two decades and they might live to be a hundred (Although I wouldn’t bet the rest of my short life on it.). But these are the 20 percent on either side of the bell curve. Most of us fall in the 80 percent middle portion.
One common analogy for cancer is farming. The soil is fertile and you scatter a bunch of seeds. Some seeds grow and others don't, although they all have the same soil, sun, and water. Our bodies are like the soil - fertile and ready to let those cancer seeds grow. The sun and water are environmental and lifestyle factors: exposure to chemicals, nutrition, exercise. Some of those cancer cells will grow and some will not, just like some of the seeds will grow and some will not. Nobody knows for sure why that is. I'll leave it to you to extrapolate from this to see how fiddling with the soil, sun, and water can encourage more or fewer seeds to grow.
In most bodies, the cancer cells start growing, but the healthy cells/immune system keep them in check and the cancer cells die a natural death, as all cells are meant to do. But in some cases, the cancer cells do NOT die as they're supposed to. They keep multiplying and dividing out of control, faster than the immune system can get rid of them. And when enough of these cells accumulate, you've got a tumor. There is a great deal of controversy over exactly what TRIGGERS these cancer cells to NOT die a natural death and instead grow out of control. But there are many, many studies (some less scientific and convincing than others) that point to diet and exposure to certain toxic chemicals as triggers.
Dioxin is one such toxic chemical that is now widely acknowledged as a cancer trigger - a carcinogenic substance. Do a Google search and you'll find plenty of info about dioxin. For example:
From Action PA's Web site (environmental activists, so they have a bias):
"A North American eating a typical North American diet will receive 93% of their dioxin exposure from meat and dairy products (23% is from milk and dairy alone; the other large sources of exposure are beef, fish, pork, poultry and eggs). In fish, these toxins bioaccumulate up the food chain so that dioxin levels in fish are 100,000 times that of the surrounding environment. The best way to avoid dioxin exposure is to reduce or eliminate your consumption of meat and dairy products by adopting a vegan diet."
From the World Health Organization (WHO) Web site:
"Although formation of dioxins is local, environmental distribution is global. Dioxins are found throughout the world in practically all media. The highest levels of these compounds are found in some soils, sediments and food, especially dairy products, meat, fish and shellfish. Very low levels are found in plants, water and air."
Other potentially carcinogenic substances that I've learned about in my research include:
- Acrylamide (in potato and corn chips, french fries, other fried or baked starchy foods)
- Aflatoxin (in peanuts and peanut products, especially peanut butter)
- Parabens (in personal care and baby care products such as lotions, shampoos, etc.)
- Formaldehyde (in building materials, cosmetics, medicines, diet colas, etc.)
There are also the myriad substances in our food, household products and environment that damage our healthy cells and immune systems so that our bodies can't fight those over-powered cancer cells and keep them from growing enough to do harm. Some say that ALL of us have cancer cells in our bodies. But not all of those cancer cells get to critical mass and become cancer. Or, they may take a very long time to get to that point - an entire lifetime of continued exposure to particular substances. According to the American Cancer Society, one out of two American men and one out of three women will get cancer at some point in their lives.
And then there are substances that actually FEED cancer cells. For example, sugar. When they do a PET scan to find where the cancerous tumors are in your body, they inject a glucose solution mixed with radioactive dye into your blood stream and then put you in a machine that will pick up the radioactive glucose tracer. The glucose solution lights up on the PET scan because cancer cells metabolize, or feed off the sugar and become active enough to be seen on the scan - like a feeding frenzy of sorts. That's why sugar is especially bad for people who already have cancer. It's like throwing lighter fluid on a fire.
Animal protein also seems to feed cancer cells. A good scientific study to explain this is "The China Study" by T. Colin Campbell. This is not a diet or nutrition book. It's a scientific study of the link between diet and disease, written, ironically, by a scientist who grew up on a dairy farm and set out to prove that malnutrition in Third World countries was due to lack of animal protein in the diet. He ended up finding out something completely different. The book is not just about one study either, but covers thousands of studies - both in the lab and in the human population. So animal products (meat, dairy, eggs) appear to be bad for TWO reasons: 1) they expose us to dioxin, 2) animal protein feeds cancer cells.
And in the case of breast cancer, which is thought to be connected to lifetime exposure to estrogen, animal products are bad for yet a THIRD reason: the growth hormones (estrogen) that are in meat, dairy, and eggs. Growth hormones are banned in Europe but widely used in the U.S. The use of growth hormones in our food and other increased exposure to estrogen in our environment in recent decades has been linked to teen-aged girls getting their periods earlier and earlier (and thereby increasing breast cancer risk).
I changed my family's food sources and switched to natural, eco-friendly household cleaners. But I did most of this during my first pregnancy, BEFORE I was diagnosed with cancer. I already had a fairly healthy lifestyle: I exercised, ate mostly fresh vegetables, avoided processed food, etc. After I was diagnosed, I got militant and cut out all meat, dairy, eggs, sugar, alcohol, and caffeine. Still, my cancer came back with a vengeance and began to spread throughout my body.
Does this mean the diet changes I'd adopted were hogwash? I don't think so. There's too much evidence, plus just plain common sense behind the notion that what we put into our bodies affects how well and long our bodies last. I've just been particularly unlucky. Or all those sausages I ate in my youth are catching up with me. (Yummm... LOVE sausages... and fried chicken, and cheese, and french fries, and... DOH-nuts... I'm not one of those vegetarians who WANTS to eat rabbit food all the time. I'd rather have a Big Mac than a bowl of sprouts ANY day! Disgusting, but true.)
Have I removed ALL suspected carcinogens from my family's life? That would be impossible. The very air we breathe puts us at risk. My kids still eat meat, dairy, and eggs, but mostly hormone-free or organic and in very small amounts. My kids eat peanut butter almost everyday, but only pure organic peanut butter that is refrigerated and therefore less prone to forming aflatoxin. And Tony's not about to give up his red wine and cheese, no matter how many relatives die of cancer.
Think of it this way: There's a way to reduce our risk of dying in a car accident to ZERO percent: Don't ever get in a car. But our modern lifestyle doesn't allow that. Instead, we use safety belts, airbags, car seats for our kids and take other measures to minimize our risk. Minimize, not eliminate. There's NO way to reduce our risk of dying of cancer to zero percent. But we can take measures to minimize our risk.
I hesitated writing anything about this topic for a number of reasons:
- This is mostly based on my own untrained, uneducated research from the Internet, books, and medical or scientific research papers, all of which are rife with misleading information, hidden agendas, and incorrect or contradictory "facts".
- Some of my understanding of these issues might just be PLAIN WRONG. Please correct me if you think I'm wrong.
- I don't necessarily believe all of this stuff, but am taking the "better safe than sorry" approach. Wimpy, I know.
- I don't want to impose my opinions on other people. I used to laugh at vegetarians, especially those who got all preachy about the evils of eating meat. Man has been eating meat for thousands of years. How can meat be bad for our health?
- I don't want people to start tossing out everything in their kitchen cupboards and bathroom cabinets on the basis of what they read here, without doing their own research and making informed choices appropriate to their lifestyles. Some of this information calls for DRASTIC changes in your life, many of which are logistically impossible, financially crippling, or just plain stress-inducing. And there's STILL NO GUARANTEE that any of these changes will prevent you from getting cancer.
I've finally decided to write about this because:
- People keep asking me to do it. Many of you are concerned about health issues but are too busy with work, family, and life to do the research. I used to be too busy as well, until keeping myself alive became a full-time job.
- People want to know why I have cancer when I'm in such a low-risk category.
- I've had genetic testing done and I do NOT have the breast cancer gene mutations. So people want to know why I have breast cancer, and such an aggressive form of it, when I don't have the gene mutations that cause breast cancer.
This is some of what I’ve learned about cancer, particularly breast cancer, in the past two years since I was diagnosed:
Only 5 – 10 percent of ALL cancers are hereditary. That means the other 90 – 95 percent are due to lifestyle, environmental factors, or just bad luck. Don’t confuse “hereditary” with “genetic”. ALL cancers are genetic, i.e., caused by genetic mutations. A cancer is considered hereditary when this genetic mutation is inherited.
There are thousands, probably millions of factors that INCREASE your risk for cancer, but no SINGLE, direct cause. In the case of breast cancer, most of these factors are out of our control: being female, menstruating at an early age, having a first-degree relative with breast cancer. But some of these factors ARE under our control, albeit to a limited extent: diet, exercise, level of exposure to carcinogenic substances and other toxins.
Maintaining an ultra-healthy lifestyle and living in a protective bubble STILL doesn't mean you won't get cancer. Christopher Reeve's wife didn't smoke and she died of lung cancer. I have friends who've been smoking a pack a day for two decades and they might live to be a hundred (Although I wouldn’t bet the rest of my short life on it.). But these are the 20 percent on either side of the bell curve. Most of us fall in the 80 percent middle portion.
One common analogy for cancer is farming. The soil is fertile and you scatter a bunch of seeds. Some seeds grow and others don't, although they all have the same soil, sun, and water. Our bodies are like the soil - fertile and ready to let those cancer seeds grow. The sun and water are environmental and lifestyle factors: exposure to chemicals, nutrition, exercise. Some of those cancer cells will grow and some will not, just like some of the seeds will grow and some will not. Nobody knows for sure why that is. I'll leave it to you to extrapolate from this to see how fiddling with the soil, sun, and water can encourage more or fewer seeds to grow.
In most bodies, the cancer cells start growing, but the healthy cells/immune system keep them in check and the cancer cells die a natural death, as all cells are meant to do. But in some cases, the cancer cells do NOT die as they're supposed to. They keep multiplying and dividing out of control, faster than the immune system can get rid of them. And when enough of these cells accumulate, you've got a tumor. There is a great deal of controversy over exactly what TRIGGERS these cancer cells to NOT die a natural death and instead grow out of control. But there are many, many studies (some less scientific and convincing than others) that point to diet and exposure to certain toxic chemicals as triggers.
Dioxin is one such toxic chemical that is now widely acknowledged as a cancer trigger - a carcinogenic substance. Do a Google search and you'll find plenty of info about dioxin. For example:
From Action PA's Web site (environmental activists, so they have a bias):
"A North American eating a typical North American diet will receive 93% of their dioxin exposure from meat and dairy products (23% is from milk and dairy alone; the other large sources of exposure are beef, fish, pork, poultry and eggs). In fish, these toxins bioaccumulate up the food chain so that dioxin levels in fish are 100,000 times that of the surrounding environment. The best way to avoid dioxin exposure is to reduce or eliminate your consumption of meat and dairy products by adopting a vegan diet."
From the World Health Organization (WHO) Web site:
"Although formation of dioxins is local, environmental distribution is global. Dioxins are found throughout the world in practically all media. The highest levels of these compounds are found in some soils, sediments and food, especially dairy products, meat, fish and shellfish. Very low levels are found in plants, water and air."
Other potentially carcinogenic substances that I've learned about in my research include:
- Acrylamide (in potato and corn chips, french fries, other fried or baked starchy foods)
- Aflatoxin (in peanuts and peanut products, especially peanut butter)
- Parabens (in personal care and baby care products such as lotions, shampoos, etc.)
- Formaldehyde (in building materials, cosmetics, medicines, diet colas, etc.)
There are also the myriad substances in our food, household products and environment that damage our healthy cells and immune systems so that our bodies can't fight those over-powered cancer cells and keep them from growing enough to do harm. Some say that ALL of us have cancer cells in our bodies. But not all of those cancer cells get to critical mass and become cancer. Or, they may take a very long time to get to that point - an entire lifetime of continued exposure to particular substances. According to the American Cancer Society, one out of two American men and one out of three women will get cancer at some point in their lives.
And then there are substances that actually FEED cancer cells. For example, sugar. When they do a PET scan to find where the cancerous tumors are in your body, they inject a glucose solution mixed with radioactive dye into your blood stream and then put you in a machine that will pick up the radioactive glucose tracer. The glucose solution lights up on the PET scan because cancer cells metabolize, or feed off the sugar and become active enough to be seen on the scan - like a feeding frenzy of sorts. That's why sugar is especially bad for people who already have cancer. It's like throwing lighter fluid on a fire.
Animal protein also seems to feed cancer cells. A good scientific study to explain this is "The China Study" by T. Colin Campbell. This is not a diet or nutrition book. It's a scientific study of the link between diet and disease, written, ironically, by a scientist who grew up on a dairy farm and set out to prove that malnutrition in Third World countries was due to lack of animal protein in the diet. He ended up finding out something completely different. The book is not just about one study either, but covers thousands of studies - both in the lab and in the human population. So animal products (meat, dairy, eggs) appear to be bad for TWO reasons: 1) they expose us to dioxin, 2) animal protein feeds cancer cells.
And in the case of breast cancer, which is thought to be connected to lifetime exposure to estrogen, animal products are bad for yet a THIRD reason: the growth hormones (estrogen) that are in meat, dairy, and eggs. Growth hormones are banned in Europe but widely used in the U.S. The use of growth hormones in our food and other increased exposure to estrogen in our environment in recent decades has been linked to teen-aged girls getting their periods earlier and earlier (and thereby increasing breast cancer risk).
I changed my family's food sources and switched to natural, eco-friendly household cleaners. But I did most of this during my first pregnancy, BEFORE I was diagnosed with cancer. I already had a fairly healthy lifestyle: I exercised, ate mostly fresh vegetables, avoided processed food, etc. After I was diagnosed, I got militant and cut out all meat, dairy, eggs, sugar, alcohol, and caffeine. Still, my cancer came back with a vengeance and began to spread throughout my body.
Does this mean the diet changes I'd adopted were hogwash? I don't think so. There's too much evidence, plus just plain common sense behind the notion that what we put into our bodies affects how well and long our bodies last. I've just been particularly unlucky. Or all those sausages I ate in my youth are catching up with me. (Yummm... LOVE sausages... and fried chicken, and cheese, and french fries, and... DOH-nuts... I'm not one of those vegetarians who WANTS to eat rabbit food all the time. I'd rather have a Big Mac than a bowl of sprouts ANY day! Disgusting, but true.)
Have I removed ALL suspected carcinogens from my family's life? That would be impossible. The very air we breathe puts us at risk. My kids still eat meat, dairy, and eggs, but mostly hormone-free or organic and in very small amounts. My kids eat peanut butter almost everyday, but only pure organic peanut butter that is refrigerated and therefore less prone to forming aflatoxin. And Tony's not about to give up his red wine and cheese, no matter how many relatives die of cancer.
Think of it this way: There's a way to reduce our risk of dying in a car accident to ZERO percent: Don't ever get in a car. But our modern lifestyle doesn't allow that. Instead, we use safety belts, airbags, car seats for our kids and take other measures to minimize our risk. Minimize, not eliminate. There's NO way to reduce our risk of dying of cancer to zero percent. But we can take measures to minimize our risk.
Saturday, March 8, 2008
Night-time Thoughts
I woke up in the middle of the night last night and couldn't get back to sleep. I lay awake for hours in the dark thinking about... Death? No. Cancer? No.
Here are some of the thoughts that kept me awake last night:
1) When Josie was a newborn, Tony and I were watching her sleep one day when she suddenly started making a strange sound. Oh no! Was she choking? Having a seizure? I panicked. Tony was more clever. "She's LAUGHING, Shin!" And she was. Just days old and there she was, chuckling at something in her sleep. And then Tony told me something about myself that I'd never known: I laugh in my sleep. That's one of my favorite things about me.
2) Josie and I were watching the Cinderella movie recently and when we got to the part where she tries on the glass slipper, Josie leapt out of her seat and clapped her hands while jumping up and down and squealing with delight, "It FITS! It FITS!" She'd seen this movie several times before and read the story dozens of times. Still, she was SO excited! When I told Tony about this, he said, "That's YOU!" That's one of the most flattering things a guy has ever said to me.
3) One of Toby's favorite games lately is to cuddle up to me and say, "You be the mommy cat and I'll be the baby cat. Meow!" That's the whole game. He does this half a dozen times a day. Yesterday, he varied it with, "You be the mommy dog and I'll be the baby dog. Arf!"
4) When Josie was about Toby's age, she also liked to play pretend and she'd say to me, "You be the mommy and I'll be the baby." Hmmm...
5) Another pretend game Josie liked to play when she first started school was, "You be the teacher and I'll be the children." "'Children' is plural, more than one, and there's only one of you," I said. She stopped to think for a few seconds, "Okay, I'll be the teacher and YOU be the children."
6) Last year, Josie's teacher told me she asked the class what "delicate" meant. Josie raised her hand and said, "'Delicate' is a synonym for 'fragile'." Then she explained what a synonym was. That's my girl!
7) Yesterday, Toby asked me if I pee standing up. I told him boys stand and girls sit. He said, "Daddy and Toby stand; mommy and Josie sit." Then I tested his gender ID skills, asking him about various storybook characters and stuffed toys. Hence, I discovered that in Toby's mind, Josie's bedtime teddy, Pink Baby, is a girl (as expected), but Toby's bedtime teddy, Blue Baby, is also a girl. Either that or ALL teddy bears sit, whatever their gender.
8) Yesterday, I was telling Josie about something very sad that had happened and Toby came running up to me, grabbed my face in his hands and asked, "You happy Mommy?" I was stumped. I didn't want to say I was happy because I'd just been talking to Josie about something sad, but I didn't want to tell Toby I was NOT happy, because I didn't want him to confuse my overall state of happiness with my present mood. So I hemmed and hawed for a few seconds and said, "Well, I'm GENERALLY happy, but right now I'm a little sad because I'm telling Josie a sad story." Boy, I can't remember the last time I was so stumped for an answer. Discussions about religion and the meaning of life are MUCH easier!
So picture me, lying in the dark at 2 a.m., smiling to myself, trying desperately NOT to laugh because that would just start a coughing fit that would be the end of me. This is not the behavior of a woman dying of cancer. Something is definitely wrong with me... ; )
[If I remember more funnies from my sleepless night, I'll add them to this Blog entry later in the day.]
Here are some of the thoughts that kept me awake last night:
1) When Josie was a newborn, Tony and I were watching her sleep one day when she suddenly started making a strange sound. Oh no! Was she choking? Having a seizure? I panicked. Tony was more clever. "She's LAUGHING, Shin!" And she was. Just days old and there she was, chuckling at something in her sleep. And then Tony told me something about myself that I'd never known: I laugh in my sleep. That's one of my favorite things about me.
2) Josie and I were watching the Cinderella movie recently and when we got to the part where she tries on the glass slipper, Josie leapt out of her seat and clapped her hands while jumping up and down and squealing with delight, "It FITS! It FITS!" She'd seen this movie several times before and read the story dozens of times. Still, she was SO excited! When I told Tony about this, he said, "That's YOU!" That's one of the most flattering things a guy has ever said to me.
3) One of Toby's favorite games lately is to cuddle up to me and say, "You be the mommy cat and I'll be the baby cat. Meow!" That's the whole game. He does this half a dozen times a day. Yesterday, he varied it with, "You be the mommy dog and I'll be the baby dog. Arf!"
4) When Josie was about Toby's age, she also liked to play pretend and she'd say to me, "You be the mommy and I'll be the baby." Hmmm...
5) Another pretend game Josie liked to play when she first started school was, "You be the teacher and I'll be the children." "'Children' is plural, more than one, and there's only one of you," I said. She stopped to think for a few seconds, "Okay, I'll be the teacher and YOU be the children."
6) Last year, Josie's teacher told me she asked the class what "delicate" meant. Josie raised her hand and said, "'Delicate' is a synonym for 'fragile'." Then she explained what a synonym was. That's my girl!
7) Yesterday, Toby asked me if I pee standing up. I told him boys stand and girls sit. He said, "Daddy and Toby stand; mommy and Josie sit." Then I tested his gender ID skills, asking him about various storybook characters and stuffed toys. Hence, I discovered that in Toby's mind, Josie's bedtime teddy, Pink Baby, is a girl (as expected), but Toby's bedtime teddy, Blue Baby, is also a girl. Either that or ALL teddy bears sit, whatever their gender.
8) Yesterday, I was telling Josie about something very sad that had happened and Toby came running up to me, grabbed my face in his hands and asked, "You happy Mommy?" I was stumped. I didn't want to say I was happy because I'd just been talking to Josie about something sad, but I didn't want to tell Toby I was NOT happy, because I didn't want him to confuse my overall state of happiness with my present mood. So I hemmed and hawed for a few seconds and said, "Well, I'm GENERALLY happy, but right now I'm a little sad because I'm telling Josie a sad story." Boy, I can't remember the last time I was so stumped for an answer. Discussions about religion and the meaning of life are MUCH easier!
So picture me, lying in the dark at 2 a.m., smiling to myself, trying desperately NOT to laugh because that would just start a coughing fit that would be the end of me. This is not the behavior of a woman dying of cancer. Something is definitely wrong with me... ; )
[If I remember more funnies from my sleepless night, I'll add them to this Blog entry later in the day.]
Friday, March 7, 2008
The Power of Arrogance
I've spent most of this morning working on a letter to various government authorities here in Singapore about a dangerous traffic situation that I've been complaining about for years. This came up because a friend of mine just witnessed an accident on the same stretch of road, ending in a young woman being killed in a horrific way, while onlookers took photos and gawked, she said.
I'd been keeping a log of all the calls and written complaints I've made to the authorities over the years, plus photos to back up my claims of the danger on this stretch of road. Unfortunately, I recently threw it all out, realizing I didn't have time for this while I was busy trying to stay alive. And by eerie coincidence, in the last phone complaint I made to the Traffic Police, I said, "Does somebody actually have to get KILLED before anything is done about this?"
You must be wondering if you're reading the right Blog. Or if maybe the tumors in my brain have finally reached the critical parts.
Traffic safety probably shouldn't rank very high on my list of priorities, given I have two young kids who might lose their mother very soon. But I want to do this for them. Bear with me.
Yes, my children walk along that road everyday to and from school, so I'd like to ensure measures are put into place so that such an accident doesn't happen again. But that's not the real reason for spending my very precious time and energy on this.
I have a far grander goal. I don't want Josie and Toby growing up thinking that things just ARE and they can't do anything to fix them. Traffic accidents are a very small thing in the grand scheme of things when you consider genocide, political oppression, racism, environmental destruction, oh... I could go on and on. But the feeling of being too small and powerless to change anything is the same.
Some of my friends know about a certain corrupt "businessman" I chased down some years ago. In the course of my investigation, I came upon other victims of this unscrupulous man, and when I asked why they hadn't taken action, their answers were, "I didn't think I could do anything", "The police told me they couldn't do anything", and even "The guy threatened me". One of his victims was an elderly lady who was left in tears.
If any of these other victims, or the authorities who claimed that they could do nothing, had even tried, I wouldn't have had to suffer the same fate they had. Each time this nasty character cheated someone else and got away with it, he got the message that he could keep doing it because nobody, not even the police, would or could do anything to stop him. I was a first-time mother with a newborn baby at the time but I was on a mission. It was not about getting revenge anymore. I was out to make a point.
Friends laughed at me. Tony laughed at me - until the guy showed up at our house and we had to call the police. And maybe it was a bit funny. Luckily, nobody got hurt, and the baddie got his comeuppance.
The point is, I've always had the arrogance to believe I could FIX things, even if they were little things in my own little world. Sometimes, they're little things that my own friends and family have laughed at me about, calling them petty or my efforts ineffectual. But I've always thought I had the power to do something, however small.
I want Josie and Toby to grow up with this same arrogance.
I'd been keeping a log of all the calls and written complaints I've made to the authorities over the years, plus photos to back up my claims of the danger on this stretch of road. Unfortunately, I recently threw it all out, realizing I didn't have time for this while I was busy trying to stay alive. And by eerie coincidence, in the last phone complaint I made to the Traffic Police, I said, "Does somebody actually have to get KILLED before anything is done about this?"
You must be wondering if you're reading the right Blog. Or if maybe the tumors in my brain have finally reached the critical parts.
Traffic safety probably shouldn't rank very high on my list of priorities, given I have two young kids who might lose their mother very soon. But I want to do this for them. Bear with me.
Yes, my children walk along that road everyday to and from school, so I'd like to ensure measures are put into place so that such an accident doesn't happen again. But that's not the real reason for spending my very precious time and energy on this.
I have a far grander goal. I don't want Josie and Toby growing up thinking that things just ARE and they can't do anything to fix them. Traffic accidents are a very small thing in the grand scheme of things when you consider genocide, political oppression, racism, environmental destruction, oh... I could go on and on. But the feeling of being too small and powerless to change anything is the same.
Some of my friends know about a certain corrupt "businessman" I chased down some years ago. In the course of my investigation, I came upon other victims of this unscrupulous man, and when I asked why they hadn't taken action, their answers were, "I didn't think I could do anything", "The police told me they couldn't do anything", and even "The guy threatened me". One of his victims was an elderly lady who was left in tears.
If any of these other victims, or the authorities who claimed that they could do nothing, had even tried, I wouldn't have had to suffer the same fate they had. Each time this nasty character cheated someone else and got away with it, he got the message that he could keep doing it because nobody, not even the police, would or could do anything to stop him. I was a first-time mother with a newborn baby at the time but I was on a mission. It was not about getting revenge anymore. I was out to make a point.
Friends laughed at me. Tony laughed at me - until the guy showed up at our house and we had to call the police. And maybe it was a bit funny. Luckily, nobody got hurt, and the baddie got his comeuppance.
The point is, I've always had the arrogance to believe I could FIX things, even if they were little things in my own little world. Sometimes, they're little things that my own friends and family have laughed at me about, calling them petty or my efforts ineffectual. But I've always thought I had the power to do something, however small.
I want Josie and Toby to grow up with this same arrogance.
Wednesday, March 5, 2008
Listen Up!
One of the most annoying things about me is that I talk too much. I talk TO people, AT people, OVER people. Well, not anymore. Not so much because I've finally wised up, but because I physically can't.
When I went for my chemo treatment on Monday, I coughed, panted, and wheezed through the meeting with my doctor because for once, I couldn't out-talk or out-interrupt her.
Later, as I was leaving the doctor's, I tried to ask the receptionist one simple question. She kept answering my question before I could finish asking it. Then I'd try to interrupt HER interrupting ME, but she kept talking over me and answering questions I hadn't finished asking. And the harder I tried to be heard, the more I lost my breath, then the coughing and panting took over, and I was left feeling exhausted, frustrated, defeated.
I've always been a strong verbal dueler. But now everyone has a sword and I've only got a pocketknife. What a humbling experience this is.
Note to medical folks tending to cancer patients: Please LISTEN to your patients. I know it's your job to tell us things. It's your job. It's our life. I think we should get to talk first.
Later on the same day, I had a two-hour conversation with some friends without a single coughing attack. I couldn't carry on a two-minute exchange with the receptionist at my doctor's office without gasping for breath, but I managed to have a two-hour conversation without a single attack. Why was that?
I realized later that it was because these friends are particularly good listeners. I didn't have to fight to be heard or fend off interruptions - the usual stuff lively discussions are made of. I didn't do all the talking, either - that would've made for a boring conversation for all of us. And I don't think these ladies were being unusually attentive to me because of my condition, because they've always been like this. I just never noticed or appreciated it as much as I do now.
Now is a good time for me to provide some explanation for my greatly reduced appearances. Some of you have offered to visit me, take me out to lunch, called me for chats on the phone, and I've been very reluctant. Here's why:
I can go for hours sometimes without any coughing or loss of breath. I even managed to speak to my kids at my usual decibel yesterday, calling out, "Hi there! You're home! Where's my hug?" loudly across to the other side of the house with no problem. A brief flash of my old life.
Yet it took me three hours to eat my breakfast of pureed veggie soup because every single spoonful started a coughing fit - one of them so bad that I almost vomited. All this while holding my bruised ribs in place because the Ibuprofen doesn't seem to be working so well anymore. So breakfast was yum, cough, cough, ouch, ouch, aargh. Repeat for three hours. And I thought the mouth ulcers were going to give me trouble!
I haven't been answering my phone much because several times, I've started coughing so much that the caller ended up quite alarmed about my condition, which really sounds much worse than it is.
A few days ago, I had a visitor who had to listen to me cough and gag for half an hour before we finally gave up. She probably left thinking I was at death's door.
Meanwhile, you might see me walking around the shops at Paragon, across from Mt. Elizabeth Hospital on chemo days, looking perfectly normal. Well, maybe not normal, since I'm bald and sometimes wearing a surgical mask, depending on my blood count that day. I worry that some of you whose invitations I've turned down might see me out and about and wonder why I can't meet you for lunch when I'm walking around a shopping mall and eating lunch by myself (or with chemo buddy).
I just can't predict when I'll be feeling okay and when I'll need to rest my lungs. I can't expect all my friends to hover in stand-by mode on the off chance I can fit them in for a quick chat in between doctor visits.
So that's why I've been so anti-social lately. And so much more verbose on this Blog. I'm letting my fingers do the talking.
When I went for my chemo treatment on Monday, I coughed, panted, and wheezed through the meeting with my doctor because for once, I couldn't out-talk or out-interrupt her.
Later, as I was leaving the doctor's, I tried to ask the receptionist one simple question. She kept answering my question before I could finish asking it. Then I'd try to interrupt HER interrupting ME, but she kept talking over me and answering questions I hadn't finished asking. And the harder I tried to be heard, the more I lost my breath, then the coughing and panting took over, and I was left feeling exhausted, frustrated, defeated.
I've always been a strong verbal dueler. But now everyone has a sword and I've only got a pocketknife. What a humbling experience this is.
Note to medical folks tending to cancer patients: Please LISTEN to your patients. I know it's your job to tell us things. It's your job. It's our life. I think we should get to talk first.
Later on the same day, I had a two-hour conversation with some friends without a single coughing attack. I couldn't carry on a two-minute exchange with the receptionist at my doctor's office without gasping for breath, but I managed to have a two-hour conversation without a single attack. Why was that?
I realized later that it was because these friends are particularly good listeners. I didn't have to fight to be heard or fend off interruptions - the usual stuff lively discussions are made of. I didn't do all the talking, either - that would've made for a boring conversation for all of us. And I don't think these ladies were being unusually attentive to me because of my condition, because they've always been like this. I just never noticed or appreciated it as much as I do now.
Now is a good time for me to provide some explanation for my greatly reduced appearances. Some of you have offered to visit me, take me out to lunch, called me for chats on the phone, and I've been very reluctant. Here's why:
I can go for hours sometimes without any coughing or loss of breath. I even managed to speak to my kids at my usual decibel yesterday, calling out, "Hi there! You're home! Where's my hug?" loudly across to the other side of the house with no problem. A brief flash of my old life.
Yet it took me three hours to eat my breakfast of pureed veggie soup because every single spoonful started a coughing fit - one of them so bad that I almost vomited. All this while holding my bruised ribs in place because the Ibuprofen doesn't seem to be working so well anymore. So breakfast was yum, cough, cough, ouch, ouch, aargh. Repeat for three hours. And I thought the mouth ulcers were going to give me trouble!
I haven't been answering my phone much because several times, I've started coughing so much that the caller ended up quite alarmed about my condition, which really sounds much worse than it is.
A few days ago, I had a visitor who had to listen to me cough and gag for half an hour before we finally gave up. She probably left thinking I was at death's door.
Meanwhile, you might see me walking around the shops at Paragon, across from Mt. Elizabeth Hospital on chemo days, looking perfectly normal. Well, maybe not normal, since I'm bald and sometimes wearing a surgical mask, depending on my blood count that day. I worry that some of you whose invitations I've turned down might see me out and about and wonder why I can't meet you for lunch when I'm walking around a shopping mall and eating lunch by myself (or with chemo buddy).
I just can't predict when I'll be feeling okay and when I'll need to rest my lungs. I can't expect all my friends to hover in stand-by mode on the off chance I can fit them in for a quick chat in between doctor visits.
So that's why I've been so anti-social lately. And so much more verbose on this Blog. I'm letting my fingers do the talking.
God's Problem
Warning: The following Blog entry contains ideas and language that those with closed minds and hearts may find objectionable. Reader discretion is advised.
Below is a transcript of a discussion I had with an old college friend last night about God. It's irreverent and opinionated, so if you're easily offended, skip this entry. Those of you who know me know that I'm a loud, opinionated, over-bearing American. Mix that with the passion and feisty temper of a Korean and you've got combustible material. So beware. You've been warned several times.
I wanted to share this with you because it surprises me that the "major stumbling block" to believing in God throughout the history of the world seems so... well, naive. Don't get me wrong. I still don't believe in the Christian God portrayed in the Bible, but my reasons for rejecting this God are not so silly. If you find yourself insulted by this remark, then you're in good company because I'm included in this characterization of naive and silly, until recently -- BEFORE cancer, in case you're curious. I'm surprised that erudite intellectuals and theologians are still going on about this, let alone humble civilians like you and me. I'm hoping three things:
1) If you are NOT a Christian, this discussion will encourage you to question your reasons for rejecting Christianity and thereby give you a more well-thought out reason than the one discussed below.
2) If you ARE a Christian, this discussion will encourage you to question your reasons for accepting Christianity and thereby give you a more well-thought out reason than the ones discussed (and dismissed) below.
3) Whatever your religion or belief, I hope this discussion will encourage you to recognize that faith is too important to leave to the "experts" or any other source than your heart. An unexamined faith is not worth having, but it's still just an intellectual exercise. I think faith is like love -- you can think, talk, and reason all you want, but in the end, it comes down to something in the heart that can't be proven, touched, or explained.
I once claimed to a girlfriend that I knew precisely why I loved Tony. He's funny, smart, kind; his natural instinct is to assume the best about people -- a trait which I especially admire and covet, because I don't have it. The list went on and on. But the reason why I love him wasn't on that list. They were just the many reasons why I liked him and got along well with him, but that's not the same as love. I could do the same for my kids. But after filling up a notebook with lists of why I love them, I'd come to the same conclusion. Try this exercise yourself. Make a list of why you love the person you love. Then take any of the items off that list and ask yourself, do you not love them still? There's your answer.
Oh! I can get preachy with the best of them! Remember, I have THREE preachers in the family!
Enough with the disclaimers and warnings. Here's the iChat discussion my friend and I had, in the raw (bad grammar and syntax included!):
Shin: Hey, do you believe in God? I can't remember.
Friend: Not so much.
S: He doesn't exist or he does and you don't like him?
F: The former.
S: So what made us and the world? What do you tell your kids?
F: I let them believe in God, like I let them believe in Santa Claus.
S: But Santa didn't make the universe. What do you tell them about the Creation thing?
F: Oh, we'll do the Big Bang on that one.
S: And who made the Big Bang happen?
F: The whole notion that God answers the question of Creation is silly. Where did God come from?
S: That's what Josie says. If there IS a God, then who made him? I told her I think WE did. Well, not me, but people. Isn't it just a nomenclature thing? God is just us in disguise?
F: Does she ask why God would let you be sick?
S: Good question. She's never asked that. I hope she does before I'm gone. I'd like to tackle that one with her.
F: Heard a great interview on NPR last week with Bart Ehrman. He's a professor of religious studies at UNC. He decided that the Bible cannot explain why there is suffering in the world, so he's no longer a Christian.
S: How silly. Josie is only five years old and she's smarter than that!
F: What do you mean?
S: You'd let a bunch of stories written by men (note, not women, cuz that would have been a completely different story), determine something as important as personal faith? Isn't that a bit naive?
F: Tell that to your brother. [My brother is a pastor and religion professor.]
S: I do. He says he's a religion scholar, not a religious scholar. I dare say I've given my over-zealous fundamentalist family the best argument they've ever seen why we don't need God.
F: His [Bart Ehrman] point is that he can't believe in a God who would allow the suffering of innocents.
S: Who says God allows or NOT allows the suffering of innocents?
F: Pretty simple logic: If he is all-powerful, then he'd be able to stop it, no?
S: Who says God does anything to or for us? Maybe he's just a watcher and lover of his creation. Much as we will be as parents some day when our kids don't give a shit about us and do all sorts of things to hurt themselves and us and we have to sit back and let them because we love them, we don't OWN them.
F: Okay, but that's not the Christian God. That's a different fella altogether.
S: Hey, I can actually PREVENT Josie from ever having breast cancer by putting into motion some extraordinary measures. But I ain't gonna do it. I think you should save this iChat and send it to that silly man, Bart Erhman. How does such a narrow and one-dimensional thinking man get to be a professor of ANYTHING?
F: I must admit that I don't think you can judge a man by one thing someone else said about him. He's wicked smart. You don't believe me, listen to the interview: http://tinyurl.com/2cv3g7
S: HE didn't say that? Somebody else said he said that? I misunderstood.
F: The question of suffering has been one of the biggest stumbling blocks toward belief throughout history.
S: I know, and that used to bother me too, but I just don't get why it's such a stumbling block anymore. I think becoming a parent changed my view on that. I see a lot of the God-man relationship reflected in the parent-child relationship. God fails in the sacrifice-your-child department. If I let Josie be killed to prove a point, I'd be in jail, not the object of worship. This idea that God is such and such and since he doesn't do such and such, then I won't believe in God at all. Very childish. This book title, "God's Problem". Shouldn't it be "Our Problem"?
F: Are you saying God is We and we are God?
S: Wrong pronoun number. I'm saying I'm God. Just kidding. Yes, I think we are God. Or God is us. Or Toys R Us. Or Toys R God.
[We just got silly after this so it's not worth repeating. It was about 4:00 a.m.!]
I'm sure I've managed to offend some of you. That was not my intention, and I'm sorry about that. My intention is quite arrogant though. I think I have a view on this topic that many of you might not have considered, judging from some of your Blog comments and e-mail comments. And many of you have been asking me about my thoughts on God and religion lately. So if you ARE offended by my honesty and openness, do the Christian thing and forgive me.
Below is a transcript of a discussion I had with an old college friend last night about God. It's irreverent and opinionated, so if you're easily offended, skip this entry. Those of you who know me know that I'm a loud, opinionated, over-bearing American. Mix that with the passion and feisty temper of a Korean and you've got combustible material. So beware. You've been warned several times.
I wanted to share this with you because it surprises me that the "major stumbling block" to believing in God throughout the history of the world seems so... well, naive. Don't get me wrong. I still don't believe in the Christian God portrayed in the Bible, but my reasons for rejecting this God are not so silly. If you find yourself insulted by this remark, then you're in good company because I'm included in this characterization of naive and silly, until recently -- BEFORE cancer, in case you're curious. I'm surprised that erudite intellectuals and theologians are still going on about this, let alone humble civilians like you and me. I'm hoping three things:
1) If you are NOT a Christian, this discussion will encourage you to question your reasons for rejecting Christianity and thereby give you a more well-thought out reason than the one discussed below.
2) If you ARE a Christian, this discussion will encourage you to question your reasons for accepting Christianity and thereby give you a more well-thought out reason than the ones discussed (and dismissed) below.
3) Whatever your religion or belief, I hope this discussion will encourage you to recognize that faith is too important to leave to the "experts" or any other source than your heart. An unexamined faith is not worth having, but it's still just an intellectual exercise. I think faith is like love -- you can think, talk, and reason all you want, but in the end, it comes down to something in the heart that can't be proven, touched, or explained.
I once claimed to a girlfriend that I knew precisely why I loved Tony. He's funny, smart, kind; his natural instinct is to assume the best about people -- a trait which I especially admire and covet, because I don't have it. The list went on and on. But the reason why I love him wasn't on that list. They were just the many reasons why I liked him and got along well with him, but that's not the same as love. I could do the same for my kids. But after filling up a notebook with lists of why I love them, I'd come to the same conclusion. Try this exercise yourself. Make a list of why you love the person you love. Then take any of the items off that list and ask yourself, do you not love them still? There's your answer.
Oh! I can get preachy with the best of them! Remember, I have THREE preachers in the family!
Enough with the disclaimers and warnings. Here's the iChat discussion my friend and I had, in the raw (bad grammar and syntax included!):
Shin: Hey, do you believe in God? I can't remember.
Friend: Not so much.
S: He doesn't exist or he does and you don't like him?
F: The former.
S: So what made us and the world? What do you tell your kids?
F: I let them believe in God, like I let them believe in Santa Claus.
S: But Santa didn't make the universe. What do you tell them about the Creation thing?
F: Oh, we'll do the Big Bang on that one.
S: And who made the Big Bang happen?
F: The whole notion that God answers the question of Creation is silly. Where did God come from?
S: That's what Josie says. If there IS a God, then who made him? I told her I think WE did. Well, not me, but people. Isn't it just a nomenclature thing? God is just us in disguise?
F: Does she ask why God would let you be sick?
S: Good question. She's never asked that. I hope she does before I'm gone. I'd like to tackle that one with her.
F: Heard a great interview on NPR last week with Bart Ehrman. He's a professor of religious studies at UNC. He decided that the Bible cannot explain why there is suffering in the world, so he's no longer a Christian.
S: How silly. Josie is only five years old and she's smarter than that!
F: What do you mean?
S: You'd let a bunch of stories written by men (note, not women, cuz that would have been a completely different story), determine something as important as personal faith? Isn't that a bit naive?
F: Tell that to your brother. [My brother is a pastor and religion professor.]
S: I do. He says he's a religion scholar, not a religious scholar. I dare say I've given my over-zealous fundamentalist family the best argument they've ever seen why we don't need God.
F: His [Bart Ehrman] point is that he can't believe in a God who would allow the suffering of innocents.
S: Who says God allows or NOT allows the suffering of innocents?
F: Pretty simple logic: If he is all-powerful, then he'd be able to stop it, no?
S: Who says God does anything to or for us? Maybe he's just a watcher and lover of his creation. Much as we will be as parents some day when our kids don't give a shit about us and do all sorts of things to hurt themselves and us and we have to sit back and let them because we love them, we don't OWN them.
F: Okay, but that's not the Christian God. That's a different fella altogether.
S: Hey, I can actually PREVENT Josie from ever having breast cancer by putting into motion some extraordinary measures. But I ain't gonna do it. I think you should save this iChat and send it to that silly man, Bart Erhman. How does such a narrow and one-dimensional thinking man get to be a professor of ANYTHING?
F: I must admit that I don't think you can judge a man by one thing someone else said about him. He's wicked smart. You don't believe me, listen to the interview: http://tinyurl.com/2cv3g7
S: HE didn't say that? Somebody else said he said that? I misunderstood.
F: The question of suffering has been one of the biggest stumbling blocks toward belief throughout history.
S: I know, and that used to bother me too, but I just don't get why it's such a stumbling block anymore. I think becoming a parent changed my view on that. I see a lot of the God-man relationship reflected in the parent-child relationship. God fails in the sacrifice-your-child department. If I let Josie be killed to prove a point, I'd be in jail, not the object of worship. This idea that God is such and such and since he doesn't do such and such, then I won't believe in God at all. Very childish. This book title, "God's Problem". Shouldn't it be "Our Problem"?
F: Are you saying God is We and we are God?
S: Wrong pronoun number. I'm saying I'm God. Just kidding. Yes, I think we are God. Or God is us. Or Toys R Us. Or Toys R God.
[We just got silly after this so it's not worth repeating. It was about 4:00 a.m.!]
I'm sure I've managed to offend some of you. That was not my intention, and I'm sorry about that. My intention is quite arrogant though. I think I have a view on this topic that many of you might not have considered, judging from some of your Blog comments and e-mail comments. And many of you have been asking me about my thoughts on God and religion lately. So if you ARE offended by my honesty and openness, do the Christian thing and forgive me.
Tuesday, March 4, 2008
A Good Day vs. A Great Day
I had a Great Day today. In case you don't know the difference between a Good Day and a Great Day, let me fill you in.
A GOOD DAY:
I'm still alive.
A GREAT DAY:
Tony went to my chemo treatment with me. A new X-ray showed that my lungs haven't gotten worse -- a big deal, because I'd started having chest pains yesterday, every time I coughed or breathed in too deeply. My doctor says the pain is from bruising caused by all the coughing, and Ibuprofen will fix that. For once, a quick and simple fix. Gotta love that!
Tony and I had lunch together and talked about our kids, about their future, and my role in their future. I love talking to Tony about anything, but especially about the kids and our future together (me, in a less physical role, of course). And we laughed together. I love laughing with Tony. He does it better than anyone I know. Well, any adult. Toby and Josie have THE BEST laughs.
I got a private room during my chemo and had some time to think and write. The nurses were kind and cheerful. I think they all believe I'm going to die soon, so they're especially nice and accommodating. Hey, there ARE perks!
After chemo, I went to Da Paolo Gourmet Deli and splurged on yummy, naughty food for me and Tony for dinner. I'm still eating mostly healthy and organic food, but I've decided to indulge in a bit of meat, cheese, and chocolate once in a while. Plus, I have mouth ulcers coming on again and I'm trying to stuff myself with as much food as I can before I can no longer eat solid food. (By the way, no more food drop-offs! You've stocked our fridge and freezer so well, there's no more room! Thank you all SO MUCH!)
I ate a slice of veggie pizza with gooey cheese while Tony drove me home from chemo. Here's a Korean joke: A guy who's sentenced to death is walking up the platform to the hangman's noose. He slips on the steps but catches himself just in time. He lets out a sigh of relief, "Whew! Almost killed myself there!" Keeping the strict diet I've been keeping for the past two years now would be like that guy. I still believe that the no-meat, no-dairy, no-sugar, no-caffeine, no-alcohol diet is the best diet for optimum health if you plan to stay healthy long-term. But it sure isn't the best diet for optimum pleasure!
Then I got home to see Josie and Toby at the playground with about a dozen other neighborhood kids of all ages, shapes, sizes, and colors. They all looked so happy. A few of the kids came up to me to say hello and looked relieved that I was still alive. I hadn't been out in a while and it was noticed, because I'm the crazy mom who dresses up in a bedsheet for Halloween and chases all the kids around.
Then I sat down with some other neighborhood moms and chatted while watching our kids run around. I hadn't had a nice long chat with these friends in weeks, maybe months, and I realized how much I've missed just talking to friends.
I know my time is precious now and I should devote every waking moment to writing to the kids, but I think what I did today was important too. I want my friends, their children, and my children to see that I'm not dead yet. I'm still alive, having fun, being the person they know.
I realized just how important this was when one of my friends told me that her daughter asked Josie why I hadn't been out for such a long time. Josie told her I was in the hospital. Another of Josie's friends asked if that was why my hair had fallen out, and Josie proceeded to tell them the story of the day my hair started falling out and she and Toby helped me pull it out so that Daddy could shave my head afterwards. Josie, grabbing a fistful of hair and yanking it out: "Mommy! Look how much I got!" Toby, eager to do everything his big sister does: "Me too! Let me try!" We had a ball. But then Toby tried pulling out Josie's hair and I had to explain that this little trick only worked with MY hair.
This time I spent with my girlfriends was also important to me for a selfish reason. I'm using them. These women will be in Josie's and Toby's lives after I'm gone. They'll probably see them almost every day, since we're neighbors. I want them to be able to tell my kids what their mother was thinking and feeling during these days. I want them to give Josie and Toby a picture of their mother through other people's eyes. I'd like my kids to see some day that I was more than the sum of my actions and conversations and interactions with just them.
So... to sum it up... What's a Great Day? Time with my husband, eating yummy food, watching my kids enjoy themselves, and talking and laughing with good friends. And no more bad cancer news. This was the best day I've had in ages.
A GOOD DAY:
I'm still alive.
A GREAT DAY:
Tony went to my chemo treatment with me. A new X-ray showed that my lungs haven't gotten worse -- a big deal, because I'd started having chest pains yesterday, every time I coughed or breathed in too deeply. My doctor says the pain is from bruising caused by all the coughing, and Ibuprofen will fix that. For once, a quick and simple fix. Gotta love that!
Tony and I had lunch together and talked about our kids, about their future, and my role in their future. I love talking to Tony about anything, but especially about the kids and our future together (me, in a less physical role, of course). And we laughed together. I love laughing with Tony. He does it better than anyone I know. Well, any adult. Toby and Josie have THE BEST laughs.
I got a private room during my chemo and had some time to think and write. The nurses were kind and cheerful. I think they all believe I'm going to die soon, so they're especially nice and accommodating. Hey, there ARE perks!
After chemo, I went to Da Paolo Gourmet Deli and splurged on yummy, naughty food for me and Tony for dinner. I'm still eating mostly healthy and organic food, but I've decided to indulge in a bit of meat, cheese, and chocolate once in a while. Plus, I have mouth ulcers coming on again and I'm trying to stuff myself with as much food as I can before I can no longer eat solid food. (By the way, no more food drop-offs! You've stocked our fridge and freezer so well, there's no more room! Thank you all SO MUCH!)
I ate a slice of veggie pizza with gooey cheese while Tony drove me home from chemo. Here's a Korean joke: A guy who's sentenced to death is walking up the platform to the hangman's noose. He slips on the steps but catches himself just in time. He lets out a sigh of relief, "Whew! Almost killed myself there!" Keeping the strict diet I've been keeping for the past two years now would be like that guy. I still believe that the no-meat, no-dairy, no-sugar, no-caffeine, no-alcohol diet is the best diet for optimum health if you plan to stay healthy long-term. But it sure isn't the best diet for optimum pleasure!
Then I got home to see Josie and Toby at the playground with about a dozen other neighborhood kids of all ages, shapes, sizes, and colors. They all looked so happy. A few of the kids came up to me to say hello and looked relieved that I was still alive. I hadn't been out in a while and it was noticed, because I'm the crazy mom who dresses up in a bedsheet for Halloween and chases all the kids around.
Then I sat down with some other neighborhood moms and chatted while watching our kids run around. I hadn't had a nice long chat with these friends in weeks, maybe months, and I realized how much I've missed just talking to friends.
I know my time is precious now and I should devote every waking moment to writing to the kids, but I think what I did today was important too. I want my friends, their children, and my children to see that I'm not dead yet. I'm still alive, having fun, being the person they know.
I realized just how important this was when one of my friends told me that her daughter asked Josie why I hadn't been out for such a long time. Josie told her I was in the hospital. Another of Josie's friends asked if that was why my hair had fallen out, and Josie proceeded to tell them the story of the day my hair started falling out and she and Toby helped me pull it out so that Daddy could shave my head afterwards. Josie, grabbing a fistful of hair and yanking it out: "Mommy! Look how much I got!" Toby, eager to do everything his big sister does: "Me too! Let me try!" We had a ball. But then Toby tried pulling out Josie's hair and I had to explain that this little trick only worked with MY hair.
This time I spent with my girlfriends was also important to me for a selfish reason. I'm using them. These women will be in Josie's and Toby's lives after I'm gone. They'll probably see them almost every day, since we're neighbors. I want them to be able to tell my kids what their mother was thinking and feeling during these days. I want them to give Josie and Toby a picture of their mother through other people's eyes. I'd like my kids to see some day that I was more than the sum of my actions and conversations and interactions with just them.
So... to sum it up... What's a Great Day? Time with my husband, eating yummy food, watching my kids enjoy themselves, and talking and laughing with good friends. And no more bad cancer news. This was the best day I've had in ages.
Monday, March 3, 2008
Things That Make Me Cry
I haven't cried much in the past two years -- not when I first heard the doctor say the word "cancer", not when I was told about the treatment I'd have to undergo, not when the cancer came back, not even with the latest news that the cancer has spread to my brain, lungs, liver, and bones.
This is not because I'm a stoic and I think it's weak to cry. I think a good, cathartic cry is great therapy and I highly recommend it (within reason, of course). But each time I hear awful news, I go into problem-solving mode: What do I need to do? Is there a way to fix this? And most times, there's somebody else there with me that I need to console, which keeps me too busy to cry. We all know this instinct to forget about yourself to make things okay for someone else, especially those of us who are parents.
But there are two things that DO make me cry: 1) thinking about my kids, and 2) the amazingly kind things people are doing for me and my family.
When I was first diagnosed with cancer, I didn't cry until one night when I went to rock Toby back to sleep. He was just five months old at the time and I was walking back and forth holding him in my arms, singing "What a Wonderful World" by Louis Armstrong. I got to the part that goes, "I hear babies cryin'. I watch them grow..." and I started thinking about the possibility that this little bundle in my arms would have to grow up without a mommy and I felt so sad for him and cried my way through the rest of the song.
Yesterday, I learned that an oncologist in the U.K. who is a friend of a colleague of a friend of a friend...(can't even remember how many people in this chain) is presenting my case to a group of ten doctors to see if they can offer any suggestions. This doctor was at his own mother's funeral when he got the call about me and apologized for having to call back a few hours later. When I heard about this, I cried.
When I read about my friend offering to auction off her phone and throw in her own cash to raise money for Max's brain cancer treatment, I cried. We need to raise $80,000 dollars in about a month, and here she is working on $1,000 at a time, with such optimism and enthusiasm. This is the same beautiful hope that made another friend's six-year-old daughter offer up her piggy bank. I cried and smiled at the same time.
I think there was a time when I would have expected, rather than been surprised by, such acts of kindness. That must have been when I was about ten years old. But the more I saw of the pain, hate, and cruelty in the world, the lower I set my expectations.
I've learned in these last few years of fighting cancer, that there is more good in the world and in us than I'd believed. That's cause for tears. Happy tears.
This is not because I'm a stoic and I think it's weak to cry. I think a good, cathartic cry is great therapy and I highly recommend it (within reason, of course). But each time I hear awful news, I go into problem-solving mode: What do I need to do? Is there a way to fix this? And most times, there's somebody else there with me that I need to console, which keeps me too busy to cry. We all know this instinct to forget about yourself to make things okay for someone else, especially those of us who are parents.
But there are two things that DO make me cry: 1) thinking about my kids, and 2) the amazingly kind things people are doing for me and my family.
When I was first diagnosed with cancer, I didn't cry until one night when I went to rock Toby back to sleep. He was just five months old at the time and I was walking back and forth holding him in my arms, singing "What a Wonderful World" by Louis Armstrong. I got to the part that goes, "I hear babies cryin'. I watch them grow..." and I started thinking about the possibility that this little bundle in my arms would have to grow up without a mommy and I felt so sad for him and cried my way through the rest of the song.
Yesterday, I learned that an oncologist in the U.K. who is a friend of a colleague of a friend of a friend...(can't even remember how many people in this chain) is presenting my case to a group of ten doctors to see if they can offer any suggestions. This doctor was at his own mother's funeral when he got the call about me and apologized for having to call back a few hours later. When I heard about this, I cried.
When I read about my friend offering to auction off her phone and throw in her own cash to raise money for Max's brain cancer treatment, I cried. We need to raise $80,000 dollars in about a month, and here she is working on $1,000 at a time, with such optimism and enthusiasm. This is the same beautiful hope that made another friend's six-year-old daughter offer up her piggy bank. I cried and smiled at the same time.
I think there was a time when I would have expected, rather than been surprised by, such acts of kindness. That must have been when I was about ten years old. But the more I saw of the pain, hate, and cruelty in the world, the lower I set my expectations.
I've learned in these last few years of fighting cancer, that there is more good in the world and in us than I'd believed. That's cause for tears. Happy tears.
Sunday, March 2, 2008
Lesson in Parenting
Yesterday, Toby threw a glass bowl onto the floor and smashed it. I told him to go stand in the corner and think about what he'd done, but he refused. I didn't have the energy or strength to follow through. I felt weak -- physically, because I couldn't just pick him up and force him to stand in the corner as I usually do, but also because I couldn't even think clearly about how I should handle the situation.
These are the times when cancer really gets to me -- when it makes my head and body so weak that I can't be the parent I want to be. There have been times when I could almost feel my mental power fading out -- when I couldn't understand what people were saying to me or couldn't remember whether or not I'd taken my medication. I used to be able to do five things at once, and now I can barely walk and talk on the phone at the same time. I've gotten used to the idea that my brain power and physical strength aren't what they used to be. I've had to let that go.
But when I have to give up on being a mother because I physically can't get the words out to talk to the kids, that's when it really gets me.
So I came clean and told Toby, "I don't have the energy to talk through this with you right now, so when Daddy gets home from work, he'll talk to you about it." (This said while coughing and panting, struggling to get the words out.)
He's only two-and-a-half years old, but he seemed to understand. He sat on the couch in the playroom and looked defiant but sad. He nodded, kept quiet and waited there for Tony to come home.
So there I was, feeling like an impotent parent. But Josie had heard this entire exchange between me and Toby and knew I was feeling defeated and sad. When I returned to the kitchen, she tried to console me by saying, "That's okay Mommy. Daddy's better at that than you are anyway."
"Do you think so? Why is that?"
"Because the other night, Daddy talked to me and Toby for so long, we both fell asleep!"
And I ended up laughing until I couldn't catch my breath. But that was okay.
These are the times when cancer really gets to me -- when it makes my head and body so weak that I can't be the parent I want to be. There have been times when I could almost feel my mental power fading out -- when I couldn't understand what people were saying to me or couldn't remember whether or not I'd taken my medication. I used to be able to do five things at once, and now I can barely walk and talk on the phone at the same time. I've gotten used to the idea that my brain power and physical strength aren't what they used to be. I've had to let that go.
But when I have to give up on being a mother because I physically can't get the words out to talk to the kids, that's when it really gets me.
So I came clean and told Toby, "I don't have the energy to talk through this with you right now, so when Daddy gets home from work, he'll talk to you about it." (This said while coughing and panting, struggling to get the words out.)
He's only two-and-a-half years old, but he seemed to understand. He sat on the couch in the playroom and looked defiant but sad. He nodded, kept quiet and waited there for Tony to come home.
So there I was, feeling like an impotent parent. But Josie had heard this entire exchange between me and Toby and knew I was feeling defeated and sad. When I returned to the kitchen, she tried to console me by saying, "That's okay Mommy. Daddy's better at that than you are anyway."
"Do you think so? Why is that?"
"Because the other night, Daddy talked to me and Toby for so long, we both fell asleep!"
And I ended up laughing until I couldn't catch my breath. But that was okay.
Love Medicine
Here are snippets of a conversation I had today with Josie while the two of us were drawing pink castles.
Josie asked, "What if they give you love medicine? Will that make your cancer go away?"
"What's 'love medicine'?"
"You know! Love!"
There was a bit of Q&A with her about why my doctors can't make my cancer go away like other people we know with cancer who have been cured. At the end of our little chat, I asked, "So, do you think there's anything we can do about this cancer?"
She paused for a second, then said with certainty in her voice, "Love. We can love."
Josie asked, "What if they give you love medicine? Will that make your cancer go away?"
"What's 'love medicine'?"
"You know! Love!"
There was a bit of Q&A with her about why my doctors can't make my cancer go away like other people we know with cancer who have been cured. At the end of our little chat, I asked, "So, do you think there's anything we can do about this cancer?"
She paused for a second, then said with certainty in her voice, "Love. We can love."
Saturday, March 1, 2008
Special Request
[This was posted on February 29, 2008. Dozens of you donated thousands of dollars to help save Max's life. Despite all the doctors' efforts, Max died on June 10, 2008. Since then, the money that was donated to Max has been put into a fund to help other children with cancer. You can scroll down to the bottom of your screen to see the latest updates on Max's family and how the money is now being used to help other children and their families. Thanks to all of you who have offered your help and support.]
I know that I have limited time, but there is one thing that I'd like to do that has nothing to do with my cancer, that I think you can help me with. So many of you have offered your help to me and my family. Now I'd like to ask your help for someone else.
I've come to learn of a four-year-old boy named Max who is here in Singapore from Ukraine for cancer treatment. I haven't met him myself, because I've been a bit preoccupied lately with my own situation. But I have several friends who know him and his family and are trying to help raise money for a stem cell transplant that could save his life. I believe they still need S$77,500 for his treatment.
He is undergoing chemotherapy now but will need the stem cell transplant around mid or end-April, depending on how he recovers from the chemo. The family needs to pay the cost of the transplant up front or the doctors will not operate and Max will be sent home.
I know this is just one boy and there are many others to save. I know that there may be more efficient ways to spend your charitable dollars -- perhaps the cost of this transplant could pay for vaccines for an entire village of children somewhere.
This past week, I've had dozens of e-mails from complete strangers all over the world offering me help that might extend my life. They don't know me; all they know is that I have two young children who need a mother. Not a special case, by any means.
But there is an entire network of people out there devoting their time and energy, and in some cases, I believe, risking their own heartache to help me and my family. I'm appealing to whatever it is that's driving you all to sacrifice your own comfort and security to open your hearts to us.
Be a cynic. Call this emotional blackmail, an egregious abuse of the "cancer card", an idealistic and emotion-driven waste of time and energy. I've thought through all that as well. But I'm going to risk alienating some of you and forget about my own pride to ask for help for this boy. Why? Because we can. Simple as that.
This fund-raising effort is being managed by Sean and Helena Wren, who are Australian expats here in Singapore. They know Max and his mother. They lost their own daughter to brain cancer when she was three years old, so they have their own reasons for wanting to help this boy.
You can contact Sean on +65 9789-9839 or e-mail him at sewren@cisco.com if you'd like to help or if you have any questions.
For more about Max, go to www.helpmax.h.com.ua. This site can be translated into English by clicking on the language box on the right hand side and then clicking the grey box below which means "set language".
For more about Sean and Helena Wren and their daughter's fight with cancer, go to www.jazzywren.com.
And here is a short video clip of Max.
I know that I have limited time, but there is one thing that I'd like to do that has nothing to do with my cancer, that I think you can help me with. So many of you have offered your help to me and my family. Now I'd like to ask your help for someone else.
I've come to learn of a four-year-old boy named Max who is here in Singapore from Ukraine for cancer treatment. I haven't met him myself, because I've been a bit preoccupied lately with my own situation. But I have several friends who know him and his family and are trying to help raise money for a stem cell transplant that could save his life. I believe they still need S$77,500 for his treatment.
He is undergoing chemotherapy now but will need the stem cell transplant around mid or end-April, depending on how he recovers from the chemo. The family needs to pay the cost of the transplant up front or the doctors will not operate and Max will be sent home.
I know this is just one boy and there are many others to save. I know that there may be more efficient ways to spend your charitable dollars -- perhaps the cost of this transplant could pay for vaccines for an entire village of children somewhere.
This past week, I've had dozens of e-mails from complete strangers all over the world offering me help that might extend my life. They don't know me; all they know is that I have two young children who need a mother. Not a special case, by any means.
But there is an entire network of people out there devoting their time and energy, and in some cases, I believe, risking their own heartache to help me and my family. I'm appealing to whatever it is that's driving you all to sacrifice your own comfort and security to open your hearts to us.
Be a cynic. Call this emotional blackmail, an egregious abuse of the "cancer card", an idealistic and emotion-driven waste of time and energy. I've thought through all that as well. But I'm going to risk alienating some of you and forget about my own pride to ask for help for this boy. Why? Because we can. Simple as that.
This fund-raising effort is being managed by Sean and Helena Wren, who are Australian expats here in Singapore. They know Max and his mother. They lost their own daughter to brain cancer when she was three years old, so they have their own reasons for wanting to help this boy.
You can contact Sean on +65 9789-9839 or e-mail him at sewren@cisco.com if you'd like to help or if you have any questions.
For more about Max, go to www.helpmax.h.com.ua. This site can be translated into English by clicking on the language box on the right hand side and then clicking the grey box below which means "set language".
For more about Sean and Helena Wren and their daughter's fight with cancer, go to www.jazzywren.com.
And here is a short video clip of Max.
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