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!)

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