A friend of mine who’s also a breast cancer patient told me she was going to ask a fortune-teller when she was going to die. I asked her if there was something she was going to do with the information, if she were actually told the date of her death. She didn’t know, but she ended up asking the fortune-teller anyway. The answer? “You will live to see your grandchildren.” A safe answer, but it doesn’t tell you anything, really, since my friend’s daughter could decide to have kids at the age of 13 or 43. That gives the fortune-teller a three-decade window to be right.
Cancer or no cancer, it’s an interesting question to ponder. Do you want to know when you’re going to die? And just how far in advance would you want to know? And IF you knew, would you be living any differently now?
Now that I’ve had a recurrence of cancer and statistically won’t be alive in five years’ time, I suppose I have a pretty good idea how many grandchildren I can expect to see. But am I living any differently as a result? Let’s see… what did I do today?
I exercised for an hour, spent two hours with Tony and the kids getting our family photos done, then the four of us went out for lunch with a good family friend. Then I went to pick out some things to save from the trash heap at my friend’s house, had a friend over for a chat, collected and gave away a bunch of baby things, went out to dinner with Tony, came home and read books and played with the kids, put them to bed, took a bath and read a book, then started typing this Blog entry.
Is there anything remarkable in my day that suggests my days are numbered? So I wonder… if we DID know when we were going to die and the remaining time was numbered in years, rather than months, would we be doing anything differently? If I thought I had only five months to live, would my day today have been any different? Do we stop living our everyday lives because we have an inkling of when we’re supposed to die?
I guess I haven’t. Although I SHOULD probably get started on my letters to the kids and finally get their baby scrapbooks finished, and finish putting the family photos into albums, and formulate my fight with the insurance company, and leave instructions to Tony on where everything is in the house, and put together keepsake boxes of my things for each of the kids, and… keep adding to this list…
Friday, August 24, 2007
Thursday, August 23, 2007
Side Effects, or Lack Thereof
I had chemo on Monday and it’s Wednesday today. I feel no side effects – no nausea, vomiting, or fatigue. I did an hour of exercise this morning, then was with the kids all day – music class, two play dates, art projects, painting – and I’m not in the least tired. In fact, I feel like I could go for a run now. But I’ll save that for tomorrow morning, when it’s still dark out and the lake is quiet.
I had a bit of achiness in my legs yesterday, but that’s gone. And one weird thing today is that each time I started eating something, my jaws hurt; almost as if I’d bitten into something very tart that made my jaw muscles tighten up. I think that might be some sort of vitamin deficiency. If anyone reading this Blog knows what that is, let me know.
A friend called me yesterday to ask how I was doing because she’d heard that I wasn’t feeling well. I got a bit annoyed because I was feeling just great. I never liked the euphemism, “she’s sick” for “she’s got cancer” or even “she’s dying”. Even before cancer came into my life, I thought it was silly to say someone was sick when they had cancer. We say someone has diabetes, has had a heart attack, had a stroke. We don’t say they’re “sick”. I know people are trying not to say the “C” word, but I certainly hope that anybody who knows me would know that I’m not afraid of a word.
But I think the real reason I find references to me as “sick” annoying is because although I am in excellent shape at the moment, I know that one day, I will indeed be sick. I want to save that word for when I’m actually looking and acting sick, not on a day like today when I’m working out, romping around with my kids, my friends’ and neighbors’ kids, and running circles around Tony, who had to take a nap in the middle of the day.
For now, I look and feel great. Except for the little matter of the cancer, I’m the healthiest and strongest I’ve ever been in my life.
I had a bit of achiness in my legs yesterday, but that’s gone. And one weird thing today is that each time I started eating something, my jaws hurt; almost as if I’d bitten into something very tart that made my jaw muscles tighten up. I think that might be some sort of vitamin deficiency. If anyone reading this Blog knows what that is, let me know.
A friend called me yesterday to ask how I was doing because she’d heard that I wasn’t feeling well. I got a bit annoyed because I was feeling just great. I never liked the euphemism, “she’s sick” for “she’s got cancer” or even “she’s dying”. Even before cancer came into my life, I thought it was silly to say someone was sick when they had cancer. We say someone has diabetes, has had a heart attack, had a stroke. We don’t say they’re “sick”. I know people are trying not to say the “C” word, but I certainly hope that anybody who knows me would know that I’m not afraid of a word.
But I think the real reason I find references to me as “sick” annoying is because although I am in excellent shape at the moment, I know that one day, I will indeed be sick. I want to save that word for when I’m actually looking and acting sick, not on a day like today when I’m working out, romping around with my kids, my friends’ and neighbors’ kids, and running circles around Tony, who had to take a nap in the middle of the day.
For now, I look and feel great. Except for the little matter of the cancer, I’m the healthiest and strongest I’ve ever been in my life.
Wednesday, August 22, 2007
Advice to Cancer Doctors
I think of all the professions in the world, being an oncologist has got to be way up there on the list of stressful and emotionally challenging jobs. I think they even have it harder than open-heart surgeons or war doctors, because unlike them, oncologists can sometimes watch their patients die for a much longer time. Surgeons and war doctors may lose their patients on the operating table, but oncologists might see and interact with their patients for weeks, months, and years before the final separation, all the while getting to know their patients fairly intimately in the process of watching them die.
I’m not sure what they teach in medical school, but there must be a course on how to interact with patients. Maybe they even teach future doctors to keep a certain emotional distance, so as not to compromise their reason and decision-making abilities. But I don’t think they have to take the humanity out of the profession.
One of the most difficult parts of my experience with having cancer has been dealing with doctors, nurses, and other hospital staff, especially the first time around. Most of them just didn’t know how to talk to a cancer patient. I don’t think it’s necessarily because they’re heartless people just doing a job. Not at all. In fact, many of them turned out to be quite kind and thoughtful, after receiving feedback from me about how I felt. I think their problem was the same for most people in general, including me, pre-cancer – we just aren’t equipped with the skills to interact with and communicate with someone who we think has a serious illness or is dying.
I think it’s every patient’s responsibility to educate his doctors and caregivers because they’re the only ones who can really do it. Sure, I think there should be a course in med school about patient communication, but each doctor-patient relationship is unique.
As an example, what should a doctor say if the patient asks, “How long do I have to live?” I don’t think any doctor should answer that question because there is not a doctor in the world who CAN answer that. I’m a person who likes to plan and I know some doctors think they need to give their patients a timeline so that they can get their affairs in order and prepare themselves and their loved ones. And I encourage doctors to give the patients a warning about preparing to die before the crucial time comes. But there’s a better way, a more humane and most importantly, an ACCURATE way to answer the question.
Here’s my suggestion: “I can’t tell you how long you have to live; nobody can do that. Nobody can tell the future. I understand your need to know so that you can prepare yourself and your loved ones. If you insist on an answer, all I can tell you is the statistics that have been gathered from past patients. According to these statistics, people with your type of cancer with symptoms and progression of disease similar to yours live for about ___ more months/years. The first half or more of that time will be relatively pain-free and you will be able to go about your life as usual. But in the last ____ weeks, you may be in some considerable pain and may need to be in hospice care. Our goal will be to manage the pain as best we can. But that is still some time away and we can discuss how you want to deal with that part a bit later.
“But remember that I’m telling you this based on statistics. Statistics are numbers and data gathered from PAST patients. They don’t necessarily tell us about the future, or about what will happen with YOU. Every patient is unique. And every patient’s reactions to drugs, manifestation of symptoms, response to treatment are unique.
“Even diseases that are considered incurable now may be curable in the future. Chicken pox was once considered incurable. Now they have a vaccine that can prevent it from even happening – and that’s just been in the past few years. They even have a vaccine that can prevent cervical cancer – that was just last year.
“I’m not saying we’re going to find a cure for your cancer in the next six or twelve months. But I’m saying that there’s no guarantee that we WON’T, and that it’s not ridiculous to have hope. So I think we can prepare for the worst, but hope for the best.”
I think that’s a realistic, practical, and honest way to give the patient the information he wants, as well as the hope he needs.
My oncologist told me the first time around, “Even if there’s one percent chance of survival, YOU will be in that one percent!” She wasn’t just being a cheerleader or giving me unreasonable hope. There is absolutely no reason why I can’t be in that one percent. And there’s no reason why every patient can’t think the same about himself. A friend once told me, if we were talking about the lottery, a one percent chance would look pretty good. People buy lottery tickets for a one-in-a-million chance at winning. Now THAT’s hope!
I’m not sure what they teach in medical school, but there must be a course on how to interact with patients. Maybe they even teach future doctors to keep a certain emotional distance, so as not to compromise their reason and decision-making abilities. But I don’t think they have to take the humanity out of the profession.
One of the most difficult parts of my experience with having cancer has been dealing with doctors, nurses, and other hospital staff, especially the first time around. Most of them just didn’t know how to talk to a cancer patient. I don’t think it’s necessarily because they’re heartless people just doing a job. Not at all. In fact, many of them turned out to be quite kind and thoughtful, after receiving feedback from me about how I felt. I think their problem was the same for most people in general, including me, pre-cancer – we just aren’t equipped with the skills to interact with and communicate with someone who we think has a serious illness or is dying.
I think it’s every patient’s responsibility to educate his doctors and caregivers because they’re the only ones who can really do it. Sure, I think there should be a course in med school about patient communication, but each doctor-patient relationship is unique.
As an example, what should a doctor say if the patient asks, “How long do I have to live?” I don’t think any doctor should answer that question because there is not a doctor in the world who CAN answer that. I’m a person who likes to plan and I know some doctors think they need to give their patients a timeline so that they can get their affairs in order and prepare themselves and their loved ones. And I encourage doctors to give the patients a warning about preparing to die before the crucial time comes. But there’s a better way, a more humane and most importantly, an ACCURATE way to answer the question.
Here’s my suggestion: “I can’t tell you how long you have to live; nobody can do that. Nobody can tell the future. I understand your need to know so that you can prepare yourself and your loved ones. If you insist on an answer, all I can tell you is the statistics that have been gathered from past patients. According to these statistics, people with your type of cancer with symptoms and progression of disease similar to yours live for about ___ more months/years. The first half or more of that time will be relatively pain-free and you will be able to go about your life as usual. But in the last ____ weeks, you may be in some considerable pain and may need to be in hospice care. Our goal will be to manage the pain as best we can. But that is still some time away and we can discuss how you want to deal with that part a bit later.
“But remember that I’m telling you this based on statistics. Statistics are numbers and data gathered from PAST patients. They don’t necessarily tell us about the future, or about what will happen with YOU. Every patient is unique. And every patient’s reactions to drugs, manifestation of symptoms, response to treatment are unique.
“Even diseases that are considered incurable now may be curable in the future. Chicken pox was once considered incurable. Now they have a vaccine that can prevent it from even happening – and that’s just been in the past few years. They even have a vaccine that can prevent cervical cancer – that was just last year.
“I’m not saying we’re going to find a cure for your cancer in the next six or twelve months. But I’m saying that there’s no guarantee that we WON’T, and that it’s not ridiculous to have hope. So I think we can prepare for the worst, but hope for the best.”
I think that’s a realistic, practical, and honest way to give the patient the information he wants, as well as the hope he needs.
My oncologist told me the first time around, “Even if there’s one percent chance of survival, YOU will be in that one percent!” She wasn’t just being a cheerleader or giving me unreasonable hope. There is absolutely no reason why I can’t be in that one percent. And there’s no reason why every patient can’t think the same about himself. A friend once told me, if we were talking about the lottery, a one percent chance would look pretty good. People buy lottery tickets for a one-in-a-million chance at winning. Now THAT’s hope!
Tuesday, August 21, 2007
Round Two, Chemo # 1
I had my first chemo treatment today and boy, do I feel great! Mentally and emotionally, I feel relieved that we’ve started the fight attacking those cancer cells. Physically, I was a bit wiped out after the two-hour drip and fell asleep in the car on the way home and then took a two-hour nap as soon as I got home. But now, I feel great. And I don’t feel the dull achy pain in my right lung and back anymore and the shooting pains have almost stopped. I don’t know if the drugs can work that fast or if it’s just in my mind. Who cares? I think the drugs are working.
The doctor decided to use one chemo drug at a time to minimize the side effects and save more weapons in the arsenal to fight later on. So I’m getting the chemo drug Navelbine, plus Herceptin, which technically, is immunotherapy rather than chemotherapy. I’ll be on the IV drip once a week for three weeks, then two weeks’ rest, then repeat until we either see some signs of response or further spread of the cancer. If the latter, then we move on to the next drug on the list. I think that’s a good plan.
The doctor also said I probably won’t lose all my hair with this drug. My immediate reaction was disappointment. I’d kinda gotten psyched to be bald again. But now, I’d be happy to keep my hair. It’s starting to look a bit better, and I think I’ll scare people less if I don’t have visible signs of cancer.
So this has been a good day. I feel lucky, I really do.
The doctor decided to use one chemo drug at a time to minimize the side effects and save more weapons in the arsenal to fight later on. So I’m getting the chemo drug Navelbine, plus Herceptin, which technically, is immunotherapy rather than chemotherapy. I’ll be on the IV drip once a week for three weeks, then two weeks’ rest, then repeat until we either see some signs of response or further spread of the cancer. If the latter, then we move on to the next drug on the list. I think that’s a good plan.
The doctor also said I probably won’t lose all my hair with this drug. My immediate reaction was disappointment. I’d kinda gotten psyched to be bald again. But now, I’d be happy to keep my hair. It’s starting to look a bit better, and I think I’ll scare people less if I don’t have visible signs of cancer.
So this has been a good day. I feel lucky, I really do.
Monday, August 20, 2007
Things to Worry About
Where to start? I’ve always been a bit of a worrier, but I’ve never had so many things to worry about all at once.
First, financial. I’m going to be under treatment for the rest of my life, however long that may be. I suppose I could save my family a lot of money by dying straight way, but I won’t be doing that, so we have to be prepared to spend tens, maybe hundreds of thousands of dollars a year on my treatment. I know money’s a trivial thing to worry about when it comes to life and death, but it’s an unavoidable fact of life that you need money to live. In my case… literally.
The financial impact my cancer is going to have on my family is a legitimate concern. My treatment could mean that our kids don’t have access to the best education available. It could mean that Tony has to work at stressful jobs for the rest of his life and jeopardize his own health and happiness.
I worried about all of this a lot until a few days ago, when it occurred to me that I was thinking about all this the wrong way. This isn’t about me. It’s about the mother of Josie and Toby. Instead of asking myself how much money I’d be taking away from my family, I asked myself, “How much would I be willing to invest to ensure that Josie and Toby have a mother?” The answer is, everything. It became clear to me that I’m not trying to save my life, but the life of the woman who would love Josie and Toby and do everything to ensure their happiness as they grow up. So I’ve laid off the guilt about bankrupting my family for the moment.
Then there are the everyday worries about every pain, twinge, and soreness I feel. Until a few weeks ago when the swelling and stiffness on my right side got worse, I’d been running about 7 to 10 kilometers a day every two to three days. Tony would run to the lake near our house and do two laps; I was doing five. So that’s about 50 minutes of running at a steady pace. Today, I went for a run and after 15 minutes, I had trouble breathing. And I started feeling tightness in my mid-chest and it felt like my windpipe was partially closed and I couldn’t get a full breath of air. I also had a dull, achy feeling in my right lung and an occasional shooting pain in the back of my neck and up to the lower skull. Nobody knows for sure how quickly cancer can spread, but it seems since last Wednesday, when I learned about the recurrence and stopped taking Ibuprofen, these symptoms have gotten much worse. I wish I could start the chemo this minute.
I’m worried about the impact my recurrence will have on my breast cancer friends. There’s nothing scarier to a cancer patient than another cancer patient who’s dying. Okay, I’m not dying yet, but most cancer patients think of a recurrence as the beginning of the end. There are a number of breast cancer patients who’ve contacted me through my doctors, looking for advice, support, and information. I’ve gone to chemo sessions with some of these women; I’ve hosted lunches to introduce newly diagnosed patients to each other; I’ve been feeding my research information to them, fielding calls from them, and just giving them pep talks on a daily basis. I’d tell then, “I was diagnosed at Stage IV and look how well I’m doing now! The cancer is completely gone! You’re very early stage; you’ll do even better!”
These women have sort of used me as an example of how healthy, happy, and cancer-free they can one day be – something you need when you’re going through the horrible side effects of treatment with the death cloud over your head. They need someone who’s been through it, come out the other side, and put cancer completely in her past. I was that someone. And now I’ve gone and let them down. I was their hope and now I’m a symbol of their impending demise.
Now all I can do is remind these women that I was very late stage when diagnosed and this was very likely to happen in my case. I defied the odds from the very start and now the statistics are catching up with me, but that doesn’t mean I can’t beat them again the next round. But most of these other women are in the early stages of cancer and I need to keep reminding them that my fate isn’t theirs. There is, however, one lady who’s just been diagnosed at Stage IV also. I’m worried about her. Naturally, she’s thinking that she, too, will have a recurrence straight away. For her, I need to stay strong and show her how well I do through the treatments. So I hope I don’t have any serious side effects, for her sake. But I also want her to see that facing death doesn’t have to be an all-encompassing, terrifying experience. With death, the means can justify the end.
I want to be as honest as I can with people and tell them I will probably die much sooner than expected but that there is so much hope out there. There are a number of drugs to try and more in research that might be available before my expiry date comes up. But meanwhile, I can have a good life, with minimal side effects and pain, and enjoy what time I have instead of wasting it, cowering in fear and crying my time away.
I hadn’t been to Dragon Boat training for the past two weeks because of the pain and swelling, but I went yesterday to say hello to the team. They’d all heard about my recurrence and every one of them must’ve been thinking about the day they, too, would have a recurrence. I went to show them I was okay and to encourage them to carry on. One lady on the team had also had a recurrence recently, but she didn’t have to do chemo so she could stay on the team. She’s going ahead with the World Championship race in Australia in September, which I’ve had to cancel because of my chemo. I was so impressed with this woman – a petite Chinese lady who looks so meek, but has proven to have the character and strength of a fighter. I was happy to see the team again and happy that I could almost show off to them that this wasn’t going to get me down.
I’m worried about my family and friends. Actually, I’m not that worried about most of them. My brother and his family are happy, settled, and having a pretty good life. But I worry about my sister, who has had arm surgery and has lived with chronic pain for years. I worry about the possibility that she will have cancer some day, since my having cancer has raised her risk. I’m a bit worried about my father because he thinks my soul will end up in Hell and I know this breaks his heart. But I hope his God will help him and my Mom through their grief when I die.
I’m worried about the family and friends who haven’t had a chance to be happy yet. There are some friends, in particular, who are going through very tough times now with divorce, difficulty having children, difficulty handling children, financial worries, broken hearts.... I guess the normal pains of life, but I’d really like to see them resolved. I want to see happy endings to these stories before I leave the theater.
Of all my worries now, the greatest one is for Tony, Josie, and Toby. I know their lives will go on, but they will go through a really tough time before they can. I imagine Toby and Josie crying and asking for me, and Tony having to explain to them that I’ve gone away forever and won’t come back. Thinking about how sad and confused the kids will be makes me teary-eyed. I’ve already started telling Josie, “I will always be in your heart, no matter what. Even if you can’t see me, I’ll be there.” I try to tell her that everyday now… just sort of slip it in with all the I-love-yous throughout the day. Although, come to think of it, maybe I shouldn’t say it TOO much or she’ll think something’s up. Or maybe she SHOULD know that something’s up and we should start preparing her. Nyahhh… still a long way yet for that.
That brings me to another thing I’m worried about: How to prepare family and friends. Do I tell them about everything I’m going through now, so that no one will be surprised when I die, or do I put on a smile and pretend nothing’s happening? I like surprises, but only pleasant surprises. That’s why all my life, I’ve imagine and mapped out worse-case scenarios in my mind – Tony dying in a plane crash on one of his business trips, losing the baby during pregnancy, one of the kids getting killed in a car crash, drowning in a pool, getting electrocuted by a battery-operated toy (Is that even possible?) – you name it, I’ve thought of it. I’d even imagined having a terminal illness, decades ago, before cancer was even a question. I think that’s why I took it so well. I was a girl scout; I was prepared. And when we got the bad news this past week about the recurrence, I was prepared for it to be much worse – in the brain, bones, liver, lungs, everywhere. So I was pleasantly surprised. This strategy has worked for me all my life. I wonder if I should subject the people I know to this. Should I go around telling everyone the bare facts – that the numbers suggest I may not be alive for another five years? (Hey, for those who are reading my Blog, I guess I’ve just done it.) That way, we’ll all be pleasantly surprised when we celebrate my 45th birthday. Or do I hide the truth from them and let them be shocked… “How could she die? She was doing so well! She looked fantastic when I had lunch with her just last week!”
I spoke to a friend this weekend who had her heart broken once again. She asked if she should give up hope of finding love, because maybe it’s not even possible and she’s just going through a lot of pain in the search for it. I know I’m probably going to die from this cancer but I’m not giving up hope of finding a cure or at least keeping the cancer at bay for long enough to see my kids grow up. Because, corny as it sounds, without hope, what do we have? Hope is implicit in everything we do, everyday. We assume the sun’s going to come up the next day and we get out of bed with the hope that the day will bring us something worth getting out of bed for. The very act of giving birth to a child shows hope in a future, that the world is worth living in.
I’m not religious. In fact, I’ve been put off organized religion, mostly by the Christians I’ve known in my life. But I have faith. Faith in the goodness of people, in the world around us, and faith that there’s a greater power than us that looks out for us. As I said in an earlier Blog entry, a better God than the one the Christians have offered.
Josie’s always asking me to tell her stories so I have to rack my brains to make up stories off the top of my head. Here’s one I came up with yesterday in the car:
Once upon a time, a long time ago before you were born and even before Daddy and I were born, there were gods and spirits everywhere that took care of everything on Earth. The river gods looked after the rivers, the tree gods looked after the trees, and the zebra gods looked after the zebras, and so on. And there was a people god who looked after the people, too. But the people started hurting each other, fighting and saying things to break each other’s hearts, hitting each other, and other terrible things. And then they started hurting the environment around them, polluting the ocean and making the oceans gods sad, killing animals for no reason and making the animal gods sad, chopping down too many trees and making the tree gods sad. So the people god went away because he didn’t want to be their god anymore. Then one day, the people looked around and said, “Hey? What happened to our god? He left us because we were being so bad and now we don’t have anyone to look after us!” And then they realized that since their god was gone, they’d have to look after each other instead. And so they did. And they stopped fighting, stopped hurting each other, and stopped destroying the Earth. And everyone lived happily ever after. The End.
(It just occurs to me that she might extrapolate from this story and think that when I die, I’ve gone away because she and Toby have been bad. Yikes!)
First, financial. I’m going to be under treatment for the rest of my life, however long that may be. I suppose I could save my family a lot of money by dying straight way, but I won’t be doing that, so we have to be prepared to spend tens, maybe hundreds of thousands of dollars a year on my treatment. I know money’s a trivial thing to worry about when it comes to life and death, but it’s an unavoidable fact of life that you need money to live. In my case… literally.
The financial impact my cancer is going to have on my family is a legitimate concern. My treatment could mean that our kids don’t have access to the best education available. It could mean that Tony has to work at stressful jobs for the rest of his life and jeopardize his own health and happiness.
I worried about all of this a lot until a few days ago, when it occurred to me that I was thinking about all this the wrong way. This isn’t about me. It’s about the mother of Josie and Toby. Instead of asking myself how much money I’d be taking away from my family, I asked myself, “How much would I be willing to invest to ensure that Josie and Toby have a mother?” The answer is, everything. It became clear to me that I’m not trying to save my life, but the life of the woman who would love Josie and Toby and do everything to ensure their happiness as they grow up. So I’ve laid off the guilt about bankrupting my family for the moment.
Then there are the everyday worries about every pain, twinge, and soreness I feel. Until a few weeks ago when the swelling and stiffness on my right side got worse, I’d been running about 7 to 10 kilometers a day every two to three days. Tony would run to the lake near our house and do two laps; I was doing five. So that’s about 50 minutes of running at a steady pace. Today, I went for a run and after 15 minutes, I had trouble breathing. And I started feeling tightness in my mid-chest and it felt like my windpipe was partially closed and I couldn’t get a full breath of air. I also had a dull, achy feeling in my right lung and an occasional shooting pain in the back of my neck and up to the lower skull. Nobody knows for sure how quickly cancer can spread, but it seems since last Wednesday, when I learned about the recurrence and stopped taking Ibuprofen, these symptoms have gotten much worse. I wish I could start the chemo this minute.
I’m worried about the impact my recurrence will have on my breast cancer friends. There’s nothing scarier to a cancer patient than another cancer patient who’s dying. Okay, I’m not dying yet, but most cancer patients think of a recurrence as the beginning of the end. There are a number of breast cancer patients who’ve contacted me through my doctors, looking for advice, support, and information. I’ve gone to chemo sessions with some of these women; I’ve hosted lunches to introduce newly diagnosed patients to each other; I’ve been feeding my research information to them, fielding calls from them, and just giving them pep talks on a daily basis. I’d tell then, “I was diagnosed at Stage IV and look how well I’m doing now! The cancer is completely gone! You’re very early stage; you’ll do even better!”
These women have sort of used me as an example of how healthy, happy, and cancer-free they can one day be – something you need when you’re going through the horrible side effects of treatment with the death cloud over your head. They need someone who’s been through it, come out the other side, and put cancer completely in her past. I was that someone. And now I’ve gone and let them down. I was their hope and now I’m a symbol of their impending demise.
Now all I can do is remind these women that I was very late stage when diagnosed and this was very likely to happen in my case. I defied the odds from the very start and now the statistics are catching up with me, but that doesn’t mean I can’t beat them again the next round. But most of these other women are in the early stages of cancer and I need to keep reminding them that my fate isn’t theirs. There is, however, one lady who’s just been diagnosed at Stage IV also. I’m worried about her. Naturally, she’s thinking that she, too, will have a recurrence straight away. For her, I need to stay strong and show her how well I do through the treatments. So I hope I don’t have any serious side effects, for her sake. But I also want her to see that facing death doesn’t have to be an all-encompassing, terrifying experience. With death, the means can justify the end.
I want to be as honest as I can with people and tell them I will probably die much sooner than expected but that there is so much hope out there. There are a number of drugs to try and more in research that might be available before my expiry date comes up. But meanwhile, I can have a good life, with minimal side effects and pain, and enjoy what time I have instead of wasting it, cowering in fear and crying my time away.
I hadn’t been to Dragon Boat training for the past two weeks because of the pain and swelling, but I went yesterday to say hello to the team. They’d all heard about my recurrence and every one of them must’ve been thinking about the day they, too, would have a recurrence. I went to show them I was okay and to encourage them to carry on. One lady on the team had also had a recurrence recently, but she didn’t have to do chemo so she could stay on the team. She’s going ahead with the World Championship race in Australia in September, which I’ve had to cancel because of my chemo. I was so impressed with this woman – a petite Chinese lady who looks so meek, but has proven to have the character and strength of a fighter. I was happy to see the team again and happy that I could almost show off to them that this wasn’t going to get me down.
I’m worried about my family and friends. Actually, I’m not that worried about most of them. My brother and his family are happy, settled, and having a pretty good life. But I worry about my sister, who has had arm surgery and has lived with chronic pain for years. I worry about the possibility that she will have cancer some day, since my having cancer has raised her risk. I’m a bit worried about my father because he thinks my soul will end up in Hell and I know this breaks his heart. But I hope his God will help him and my Mom through their grief when I die.
I’m worried about the family and friends who haven’t had a chance to be happy yet. There are some friends, in particular, who are going through very tough times now with divorce, difficulty having children, difficulty handling children, financial worries, broken hearts.... I guess the normal pains of life, but I’d really like to see them resolved. I want to see happy endings to these stories before I leave the theater.
Of all my worries now, the greatest one is for Tony, Josie, and Toby. I know their lives will go on, but they will go through a really tough time before they can. I imagine Toby and Josie crying and asking for me, and Tony having to explain to them that I’ve gone away forever and won’t come back. Thinking about how sad and confused the kids will be makes me teary-eyed. I’ve already started telling Josie, “I will always be in your heart, no matter what. Even if you can’t see me, I’ll be there.” I try to tell her that everyday now… just sort of slip it in with all the I-love-yous throughout the day. Although, come to think of it, maybe I shouldn’t say it TOO much or she’ll think something’s up. Or maybe she SHOULD know that something’s up and we should start preparing her. Nyahhh… still a long way yet for that.
That brings me to another thing I’m worried about: How to prepare family and friends. Do I tell them about everything I’m going through now, so that no one will be surprised when I die, or do I put on a smile and pretend nothing’s happening? I like surprises, but only pleasant surprises. That’s why all my life, I’ve imagine and mapped out worse-case scenarios in my mind – Tony dying in a plane crash on one of his business trips, losing the baby during pregnancy, one of the kids getting killed in a car crash, drowning in a pool, getting electrocuted by a battery-operated toy (Is that even possible?) – you name it, I’ve thought of it. I’d even imagined having a terminal illness, decades ago, before cancer was even a question. I think that’s why I took it so well. I was a girl scout; I was prepared. And when we got the bad news this past week about the recurrence, I was prepared for it to be much worse – in the brain, bones, liver, lungs, everywhere. So I was pleasantly surprised. This strategy has worked for me all my life. I wonder if I should subject the people I know to this. Should I go around telling everyone the bare facts – that the numbers suggest I may not be alive for another five years? (Hey, for those who are reading my Blog, I guess I’ve just done it.) That way, we’ll all be pleasantly surprised when we celebrate my 45th birthday. Or do I hide the truth from them and let them be shocked… “How could she die? She was doing so well! She looked fantastic when I had lunch with her just last week!”
I spoke to a friend this weekend who had her heart broken once again. She asked if she should give up hope of finding love, because maybe it’s not even possible and she’s just going through a lot of pain in the search for it. I know I’m probably going to die from this cancer but I’m not giving up hope of finding a cure or at least keeping the cancer at bay for long enough to see my kids grow up. Because, corny as it sounds, without hope, what do we have? Hope is implicit in everything we do, everyday. We assume the sun’s going to come up the next day and we get out of bed with the hope that the day will bring us something worth getting out of bed for. The very act of giving birth to a child shows hope in a future, that the world is worth living in.
I’m not religious. In fact, I’ve been put off organized religion, mostly by the Christians I’ve known in my life. But I have faith. Faith in the goodness of people, in the world around us, and faith that there’s a greater power than us that looks out for us. As I said in an earlier Blog entry, a better God than the one the Christians have offered.
Josie’s always asking me to tell her stories so I have to rack my brains to make up stories off the top of my head. Here’s one I came up with yesterday in the car:
Once upon a time, a long time ago before you were born and even before Daddy and I were born, there were gods and spirits everywhere that took care of everything on Earth. The river gods looked after the rivers, the tree gods looked after the trees, and the zebra gods looked after the zebras, and so on. And there was a people god who looked after the people, too. But the people started hurting each other, fighting and saying things to break each other’s hearts, hitting each other, and other terrible things. And then they started hurting the environment around them, polluting the ocean and making the oceans gods sad, killing animals for no reason and making the animal gods sad, chopping down too many trees and making the tree gods sad. So the people god went away because he didn’t want to be their god anymore. Then one day, the people looked around and said, “Hey? What happened to our god? He left us because we were being so bad and now we don’t have anyone to look after us!” And then they realized that since their god was gone, they’d have to look after each other instead. And so they did. And they stopped fighting, stopped hurting each other, and stopped destroying the Earth. And everyone lived happily ever after. The End.
(It just occurs to me that she might extrapolate from this story and think that when I die, I’ve gone away because she and Toby have been bad. Yikes!)
Sunday, August 19, 2007
Looking Forward to Chemo
Nope, haven’t lost my mind. I’m actually quite eager to get started on the chemo right away. I don’t want to give these cancer cells any more time to grow. Plus, I’m starting to feel the cancer now.
For most of this year, I’d been feeling pains on the right side of my chest. They were sharp, shooting pains where the radiation had been, and the skin around the area where the skin tumor was removed remained tender and painful to the touch. I’d also felt swelling on the back and right armpit area a number of times. I told my oncologist, my surgeon, and my reconstruction surgeon. They all said it was nerve damage caused by radiation and it was perfectly normal.
In May, I told my radiation oncologist that the pain was getting worse – the stabbing sensation was coming every 5-6 seconds and each one lasted about 2-3 seconds (yes, I timed them like labor contractions). He said that was strange, but probably just nerve damage from radiation and nothing to worry about.
I went to see a breast surgeon in the U.S. when we were there in June and she told me to take Ibuprofen. After several days, the pain went away, so we concluded it was swelling caused by nerve damage.
A few weeks ago, the swelling and tightness got worse so I stopped Dragon Boat training, thinking that I was overexerting the right arm and that was causing the pain and swelling. I also started taking Ibuprofen again. The pain stopped mostly, but the swelling took some time to go down.
When the PET-CT scan came back positive for cancer three days ago, I stopped taking Ibuprofen. Since then, I’ve felt a dull pain deep in the chest on the right side, almost toward the back, as well as on my right collarbone, near the shoulder. And when I cough, I feel pain in the right chest.
My conclusion is that I’d been masking misdiagnosed cancer symptoms with Ibuprofen. If I hadn’t been taking Ibuprofen for the past two weeks, I might have felt this deep chest pain. Or these tumors are really growing so quickly that it’s gone from a little shooting pain to deep chest in just two weeks’ time.
So I’ve got to get started on chemo immediately. Since we know for sure now that there IS cancer in my chest and not just pinched nerves, I’m really worried about the pain I’m feeling. I could live with this pain and discomfort forever if I knew it was just damaged nerves, but knowing that it’s cancer growing inside me and trying to take over and kill me… it’s giving me the creeps.
Tony and I saw “Bourne Ultimatum” last night. We needed to get our minds off cancer. In the movie, Matt Damon’s character tells another CIA agent that is now being targeted for assassination, “They’ll come back for you. You have to run.” Then she gets on a bus to try to disappear and escape certain death. I thought how impossible a life on the run would be, always looking over your shoulder, afraid that someone will jump out from behind a door and kill you. I thought that if I were ever hunted, I couldn’t run. I’d turn around and face the fight because dying like that would be better than living a half-life in fear of death every second. And then a thought occurred to me. I just got the same warning – “They’ll come back for you.” These cancer cells will keep coming for me. Except I can’t run. I have no choice but to fight. That makes the decision a lot easier.
And the moral of the story is… I’d rather have cancer than be an ex-CIA agent on the run, targeted by my former bosses for assassination.
For most of this year, I’d been feeling pains on the right side of my chest. They were sharp, shooting pains where the radiation had been, and the skin around the area where the skin tumor was removed remained tender and painful to the touch. I’d also felt swelling on the back and right armpit area a number of times. I told my oncologist, my surgeon, and my reconstruction surgeon. They all said it was nerve damage caused by radiation and it was perfectly normal.
In May, I told my radiation oncologist that the pain was getting worse – the stabbing sensation was coming every 5-6 seconds and each one lasted about 2-3 seconds (yes, I timed them like labor contractions). He said that was strange, but probably just nerve damage from radiation and nothing to worry about.
I went to see a breast surgeon in the U.S. when we were there in June and she told me to take Ibuprofen. After several days, the pain went away, so we concluded it was swelling caused by nerve damage.
A few weeks ago, the swelling and tightness got worse so I stopped Dragon Boat training, thinking that I was overexerting the right arm and that was causing the pain and swelling. I also started taking Ibuprofen again. The pain stopped mostly, but the swelling took some time to go down.
When the PET-CT scan came back positive for cancer three days ago, I stopped taking Ibuprofen. Since then, I’ve felt a dull pain deep in the chest on the right side, almost toward the back, as well as on my right collarbone, near the shoulder. And when I cough, I feel pain in the right chest.
My conclusion is that I’d been masking misdiagnosed cancer symptoms with Ibuprofen. If I hadn’t been taking Ibuprofen for the past two weeks, I might have felt this deep chest pain. Or these tumors are really growing so quickly that it’s gone from a little shooting pain to deep chest in just two weeks’ time.
So I’ve got to get started on chemo immediately. Since we know for sure now that there IS cancer in my chest and not just pinched nerves, I’m really worried about the pain I’m feeling. I could live with this pain and discomfort forever if I knew it was just damaged nerves, but knowing that it’s cancer growing inside me and trying to take over and kill me… it’s giving me the creeps.
Tony and I saw “Bourne Ultimatum” last night. We needed to get our minds off cancer. In the movie, Matt Damon’s character tells another CIA agent that is now being targeted for assassination, “They’ll come back for you. You have to run.” Then she gets on a bus to try to disappear and escape certain death. I thought how impossible a life on the run would be, always looking over your shoulder, afraid that someone will jump out from behind a door and kill you. I thought that if I were ever hunted, I couldn’t run. I’d turn around and face the fight because dying like that would be better than living a half-life in fear of death every second. And then a thought occurred to me. I just got the same warning – “They’ll come back for you.” These cancer cells will keep coming for me. Except I can’t run. I have no choice but to fight. That makes the decision a lot easier.
And the moral of the story is… I’d rather have cancer than be an ex-CIA agent on the run, targeted by my former bosses for assassination.
Saturday, August 18, 2007
Announcing Bad News
Does Hallmark make greetings cards that say, “I’m sorry but I have cancer again. Thanks for your kind thoughts”? I don’t know how to go about telling everyone about this news because, frankly, it’s SUCH a downer! It’s not the kind of news you want to run out and announce to people you haven’t spoken to or seen in weeks, months, or even years. But I don’t want people to think I’m hiding it or trying to be private about it.
So back to the greeting card. Here’s what it should say:
Hello all. I’m sorry to tell you such bad news, but it appears the cancer has returned. I will have to start chemo again next week. The doctor says this is now a “chronic” condition and I can expect to be undergoing treatment for the rest of my life. There are a number of chemo drugs we haven’t tried yet, so the idea is that we’ll try each one, with the hope that each will keep me alive for a bit longer. The goal is to find the most effective drugs with the least side effects.
For now, we’ve decided to stay in Singapore for the treatment because it would cost too much in the U.S. We might return to the U.S. at some point to participate in clinical trials, but that might be some time away, after we’ve exhausted all the drug options we have available now.
It’s not all bleak. The cancer’s still confined to the chest, neck, arm areas and hasn’t spread to the brain or liver or bones, as far as we can tell. We’re still not sure about the lungs, so we’re going to get some second opinions about that next week.
My thinking is that we’ll try one drug, it’ll work for a year or so, then the cancer will start growing again, then we’ll try the next drug on the list and that’ll work for a year or so, and so on down the list and by the time we’ve gone through all the drugs, they’ll have developed new ones that will keep me alive for another year or so and by then, it will have been ten or more years and they’ll have found a cure. That’s the scenario I’m looking at. Optimistic, but perfectly realistic, given the rate at which cancer research is advancing, especially for breast cancer.
Some of you have already heard the news and have offered all sorts of help and support and for that, we’re really grateful. We’re lucky to know so many unusually generous people. Right now, we’re just digesting the news ourselves and bracing ourselves for the big fight.
So if you’ve heard about our bad news through a third party instead of directly from us, it’s not because we didn’t want to let you know. Maybe the opportunity didn’t come up. Or maybe I just didn’t want to go around bumming everyone out all at once.
Someone asked me how I felt about the cancer coming back. I searched my extensive vocabulary for the right adjective and I came up with “annoying”. I know it might seem like an understatement, but I feel like this is a really annoying thing I have to go through and put my family and friends through, but I’ll get through it and life will go on. But for now, there’s a lot to get through that is very, very annoying.
Okay. End of Hallmark.
So back to the greeting card. Here’s what it should say:
Hello all. I’m sorry to tell you such bad news, but it appears the cancer has returned. I will have to start chemo again next week. The doctor says this is now a “chronic” condition and I can expect to be undergoing treatment for the rest of my life. There are a number of chemo drugs we haven’t tried yet, so the idea is that we’ll try each one, with the hope that each will keep me alive for a bit longer. The goal is to find the most effective drugs with the least side effects.
For now, we’ve decided to stay in Singapore for the treatment because it would cost too much in the U.S. We might return to the U.S. at some point to participate in clinical trials, but that might be some time away, after we’ve exhausted all the drug options we have available now.
It’s not all bleak. The cancer’s still confined to the chest, neck, arm areas and hasn’t spread to the brain or liver or bones, as far as we can tell. We’re still not sure about the lungs, so we’re going to get some second opinions about that next week.
My thinking is that we’ll try one drug, it’ll work for a year or so, then the cancer will start growing again, then we’ll try the next drug on the list and that’ll work for a year or so, and so on down the list and by the time we’ve gone through all the drugs, they’ll have developed new ones that will keep me alive for another year or so and by then, it will have been ten or more years and they’ll have found a cure. That’s the scenario I’m looking at. Optimistic, but perfectly realistic, given the rate at which cancer research is advancing, especially for breast cancer.
Some of you have already heard the news and have offered all sorts of help and support and for that, we’re really grateful. We’re lucky to know so many unusually generous people. Right now, we’re just digesting the news ourselves and bracing ourselves for the big fight.
So if you’ve heard about our bad news through a third party instead of directly from us, it’s not because we didn’t want to let you know. Maybe the opportunity didn’t come up. Or maybe I just didn’t want to go around bumming everyone out all at once.
Someone asked me how I felt about the cancer coming back. I searched my extensive vocabulary for the right adjective and I came up with “annoying”. I know it might seem like an understatement, but I feel like this is a really annoying thing I have to go through and put my family and friends through, but I’ll get through it and life will go on. But for now, there’s a lot to get through that is very, very annoying.
Okay. End of Hallmark.
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