The world can be divided into cancer and non-cancer people. People who have never been touched by cancer live blissfully unaware of death. Those who have cancer or even those who are close to someone with cancer have to face a completely new world -- a world that looks the same as it did before but is really almost just a dream because it can all be taken away.
Some cancer people liken it to a parallel universe. A lot of everyday things remain the same A.D. (After Diagnosis) as they were B.C. (Before Cancer). I still pay bills, play with my kids, go grocery shopping. I still yell at dangerous drivers on the road, argue with my husband, lose my patience with the kids. All very much as they were B.C. So most of the time, I live in the B.C. universe with everyone else.
But several times a day, I’m reminded that I don’t belong in this universe anymore. I’m bald. I have scars on my chest where my breasts used to be. I swallow 35 pills a day. For breakfast, I drink vitamin concoctions. I have a port implanted under the skin on my chest, with a tube that runs into the main artery to my heart. But all of these things have almost become natural to me now. They don’t really scream, “You have cancer! You’re gonna die!” at me anymore. They just let me know I have a new diet and a new look. That is, until I stop to think about it.
The times I really feel I’m living in a different universe is when I think about the future. I was in a shopping mall recently and found some clothes on sale, so I tried on an armful of clothes. Then I put them all back. It suddenly seemed silly to buy news clothes. They might just go to waste.
Tony let the kids eat chocolate-covered ice cream today. I started to fret that my kids are going to grow up on junk food if I’m not around. These are the kinds of silly everyday things that scream to me that I have cancer. If I can’t even be around to make sure my kids eat nutritious food, how am I going to ensure that they grow up to be thoughtful, kind, loving, confident, strong, and independent adults? How will I make sure that they even remember me?
These are the kinds of thoughts that run through a cancer person’s head in the parallel universe we call Cancer World. Non-cancer people see an overly protective mother complaining about her kids having too much sugar in their diet. Cancer people see a mother who knows she might not be around much longer to watch her kids eat ice cream, tuck them in at night, watch them go out on their first date, get married and have kids of their own. And all this because of a little ice cream... This is something non-cancer people can’t understand.
Tuesday, August 1, 2006
Monday, July 31, 2006
Bald Again!
I had my head shaved today; this time, for somebody else. I was one of over 600 volunteers who raised money for the Children’s Cancer Foundation by having their heads shaved. I’d just started getting my hair back after chemo, but when I heard about this fundraiser, I immediately signed up.
Later, I started to have doubts. When I’d raised only S$3,000, I thought I’d pay that to KEEP my hair. Some people, including my radiation oncologist, said they’d sponsor me NOT to shave my head. And after my radiation treatment ended a few weeks ago, I thought how nice it would be to keep my hair and have a normal life again -- no more daily visits to the hospital, no more chemo-bald head staring back at me from the mirror. But then I raised $10,000 and thought that was worth being bald for. Besides, I don’t need a bald head to remind me I have cancer. I’m reminded of it everyday when I get dressed and undressed.
I did an informal survey of participants at the “Hair for Hope” fundraiser. I wanted to know if people were volunteering because they personally knew someone with cancer. Of the 50 people I asked, 22 people said they knew someone with cancer and 28 said they didn’t personally know anyone with cancer. I was very surprised. Actually, I was touched. I know these people weren’t volunteering to be shaved in order to help me, personally, but I was really touched that non-cancer people cared enough about cancer people to do something like this.
Later, I started to have doubts. When I’d raised only S$3,000, I thought I’d pay that to KEEP my hair. Some people, including my radiation oncologist, said they’d sponsor me NOT to shave my head. And after my radiation treatment ended a few weeks ago, I thought how nice it would be to keep my hair and have a normal life again -- no more daily visits to the hospital, no more chemo-bald head staring back at me from the mirror. But then I raised $10,000 and thought that was worth being bald for. Besides, I don’t need a bald head to remind me I have cancer. I’m reminded of it everyday when I get dressed and undressed.
I did an informal survey of participants at the “Hair for Hope” fundraiser. I wanted to know if people were volunteering because they personally knew someone with cancer. Of the 50 people I asked, 22 people said they knew someone with cancer and 28 said they didn’t personally know anyone with cancer. I was very surprised. Actually, I was touched. I know these people weren’t volunteering to be shaved in order to help me, personally, but I was really touched that non-cancer people cared enough about cancer people to do something like this.
Thursday, July 27, 2006
Ants on My Arm
Once you’ve had cancer, it’s a pretty tough balance to be aware of warning signs of more cancer without being a paranoid hypochondriac. I’ve been feeling a tingling sensation on my left arm for most of today. It feels like there are ants crawling up my arm, but when I look down, there’s nothing. I had my Herceptin treatment yesterday. Maybe this is a new, delayed side effect?
A few weeks ago, I had a headache for a day and a half. I was concerned for two reasons: One, I never get headaches. Even when I’m hung-over, I just feel queasy, sans headaches. Two, I have cancer. I’ve heard stories of how people discovered their cancer. Many of them started with seemingly innocuous symptoms -- a headache, a bloody nose, a slight but persistent cough.
So if someone who never gets headaches suddenly gets headaches, and that someone happens to have cancer, and that cancer happens to spread to the brain 40% of the time that it spreads to the rest of the body, well... can’t blame myself for being a bit worried. This is precisely why post-cancer life is never going to be pre-cancer life. After cancer, a headache is never just a headache.
A few weeks ago, I had a headache for a day and a half. I was concerned for two reasons: One, I never get headaches. Even when I’m hung-over, I just feel queasy, sans headaches. Two, I have cancer. I’ve heard stories of how people discovered their cancer. Many of them started with seemingly innocuous symptoms -- a headache, a bloody nose, a slight but persistent cough.
So if someone who never gets headaches suddenly gets headaches, and that someone happens to have cancer, and that cancer happens to spread to the brain 40% of the time that it spreads to the rest of the body, well... can’t blame myself for being a bit worried. This is precisely why post-cancer life is never going to be pre-cancer life. After cancer, a headache is never just a headache.
Friday, July 21, 2006
Radiation Graduation
Today was the 28th and last radiation session. I took Josie and Toby with me, along with two home-made cakes for my radiation team and cards from the kids and from me. The kids waited outside in the waiting area while I was in the treatment room and entertained the staff and other patients.
It really felt like a graduation of some sort. I felt a bit sad that the routine I’d gotten used to for the past six weeks was coming to an end, but excited that I was finally finished with the treatment. There was a party mood in the treatment area -- the kids were running around and laughing, I was hugging the ladies on my radiation team and saying farewells and good wishes, then we all gathered around for a group photo.
Out of the corner of my eye, I saw a new patient, a woman about my age, with an unsmiling, almost angry set face, sitting in the waiting area. I could almost hear what she was thinking: “What’s all this commotion? Why are there kids running around in a cancer center? Why are the radiologists socializing when they should be looking at their computer monitors and tending to their patients?” The last bit, I could sympathize with. Because the computers are outside in the open treatment area, I was afraid that the staff were not paying careful enough attention to what was happening to the patient inside the treatment room. I felt bad about this woman and wanted to apologize to her, but I had kids to round up. I hope she learns to smile. If not, she has a very long and hard journey ahead of her.
Graduation ceremonies are called “commencements” for a reason. This is the beginning of my life post-cancer. I’ve done the chemotherapy, surgery, and radiation. Now comes the hard part. Waiting. Waiting and hoping that cancer doesn’t come back. I assume I’ll be going for regular check-ups for the rest of my life, and each one will be a breath-holding, fist-clenching nervous wait for the test results to show that I’m still cancer-free.
I still have Herceptin every three weeks until next January, so I guess technically, I’m still on chemotherapy. But it feels like I’ve gotten past the main parts of the treatment. I celebrated by having a tiny sip of champagne at dinner -- the first taste of alcohol since last December. It was nice, but more symbolic than anything else.
It really felt like a graduation of some sort. I felt a bit sad that the routine I’d gotten used to for the past six weeks was coming to an end, but excited that I was finally finished with the treatment. There was a party mood in the treatment area -- the kids were running around and laughing, I was hugging the ladies on my radiation team and saying farewells and good wishes, then we all gathered around for a group photo.
Out of the corner of my eye, I saw a new patient, a woman about my age, with an unsmiling, almost angry set face, sitting in the waiting area. I could almost hear what she was thinking: “What’s all this commotion? Why are there kids running around in a cancer center? Why are the radiologists socializing when they should be looking at their computer monitors and tending to their patients?” The last bit, I could sympathize with. Because the computers are outside in the open treatment area, I was afraid that the staff were not paying careful enough attention to what was happening to the patient inside the treatment room. I felt bad about this woman and wanted to apologize to her, but I had kids to round up. I hope she learns to smile. If not, she has a very long and hard journey ahead of her.
Graduation ceremonies are called “commencements” for a reason. This is the beginning of my life post-cancer. I’ve done the chemotherapy, surgery, and radiation. Now comes the hard part. Waiting. Waiting and hoping that cancer doesn’t come back. I assume I’ll be going for regular check-ups for the rest of my life, and each one will be a breath-holding, fist-clenching nervous wait for the test results to show that I’m still cancer-free.
I still have Herceptin every three weeks until next January, so I guess technically, I’m still on chemotherapy. But it feels like I’ve gotten past the main parts of the treatment. I celebrated by having a tiny sip of champagne at dinner -- the first taste of alcohol since last December. It was nice, but more symbolic than anything else.
Thursday, July 6, 2006
Radiation - Day 17
I met with my radiation oncologist today -- I see him once a week while I’m having radiation. He asked me if he could show my Blog entry (written after my first session) to the head radiotherapist. He said it would be interesting for them to see it from the patient’s point of view.
A few other people in the medical field have said that to me. Maybe patients should share their thoughts and feelings more often, because I often get the sense that people just aren’t talking enough -- on both sides of the treatment divide. I’m not asking for people to spill their guts and pour forth about mortality and fear of dying. I just wish people could be a bit more human, so that doctors and nurses think about what the patient is going through and patients think about how the treatment team might feel about facing people with such dire needs every working day.
A few other people in the medical field have said that to me. Maybe patients should share their thoughts and feelings more often, because I often get the sense that people just aren’t talking enough -- on both sides of the treatment divide. I’m not asking for people to spill their guts and pour forth about mortality and fear of dying. I just wish people could be a bit more human, so that doctors and nurses think about what the patient is going through and patients think about how the treatment team might feel about facing people with such dire needs every working day.
Wednesday, July 5, 2006
Ten More Years
My new favorite number is ten. I read an article in TIME magazine recently about research to isolate the cancer stem cell so that cancer can be killed at the source. So instead of just attacking the tumor with chemotherapy and radiation, some day, they’ll be able to kill the stem cell that creates cancer cells. Then there would be no more cancer recurrence once the tumor has been removed. The doctor quoted in the story said it would take no more than ten years for scientists to succeed at this.
I read another article about new treatments to kill cancer cells by cutting off various feeders that keep them alive and allow them to grow. Again, this article said success is expected in ten years. And today, my oncologist told me that she expects there to be a cure in ten years. She’s just come back from the ASCO (American Society of Clinical Oncologists) conference in the U.S. and she said unlike previous conferences she’d attended where they just rehashed the same things over and over again, this year, there were some really exciting new developments in research.
I think if I can just hang on for ten more years, they’ll have found a cure for my cancer. Just ten more years. Josie will be 13 and Toby will be 11. They’ll be old enough then to remember me. But if they find a cure by then, I won’t have to worry about whether or not they’ll remember me. So I’m holding out for ten.
I read another article about new treatments to kill cancer cells by cutting off various feeders that keep them alive and allow them to grow. Again, this article said success is expected in ten years. And today, my oncologist told me that she expects there to be a cure in ten years. She’s just come back from the ASCO (American Society of Clinical Oncologists) conference in the U.S. and she said unlike previous conferences she’d attended where they just rehashed the same things over and over again, this year, there were some really exciting new developments in research.
I think if I can just hang on for ten more years, they’ll have found a cure for my cancer. Just ten more years. Josie will be 13 and Toby will be 11. They’ll be old enough then to remember me. But if they find a cure by then, I won’t have to worry about whether or not they’ll remember me. So I’m holding out for ten.
Monday, July 3, 2006
“Could Be Worse...” Game
Since my diagnosis, I’ve been playing this game with myself from time to time, thinking up scenarios that would be worse than having cancer. It’s morbid, realistic, and optimistic, all at once.
What if Josie or Toby had cancer instead of me? Worse, much worse. I can’t think of anything worse for parents to go through than helplessly watch their kids go through cancer and treatment. Thank goodness it’s me instead of them. What if Tony did? Worse. I’d rather go through this myself than watch him go through it. Plus, purely pragmatically, better for me to have cancer than Tony, since he’s the income earner in the family. Thank goodness it’s me instead of him.
I heard a story on the radio recently about “acid attacks” in Bangladesh, in which men throw acid on the faces of women who’ve rejected or crossed them. These women are disfigured for life. Worse than cancer. If I had a disfigured face, my kids would be afraid of me and I’d be crushed if I couldn’t even hug and play with my own kids because they were afraid of my face. With cancer quietly threatening my life unseen, they don’t know anything’s wrong. Thank goodness I have cancer instead.
Living in a war zone and fearing for the life of my children every waking moment. Worse than cancer.
The other day I saw a woman at the supermarket with a hideous haircut. I thought to myself I’d rather be bald than have her haircut. Who said facing death made you deep and philosophical? A friend of mine told me, “I’ve been bald since I was 23. At least YOUR hair will grow back someday!” Yes, things could be worse, much worse. Thank goodness I have cancer instead.
What if Josie or Toby had cancer instead of me? Worse, much worse. I can’t think of anything worse for parents to go through than helplessly watch their kids go through cancer and treatment. Thank goodness it’s me instead of them. What if Tony did? Worse. I’d rather go through this myself than watch him go through it. Plus, purely pragmatically, better for me to have cancer than Tony, since he’s the income earner in the family. Thank goodness it’s me instead of him.
I heard a story on the radio recently about “acid attacks” in Bangladesh, in which men throw acid on the faces of women who’ve rejected or crossed them. These women are disfigured for life. Worse than cancer. If I had a disfigured face, my kids would be afraid of me and I’d be crushed if I couldn’t even hug and play with my own kids because they were afraid of my face. With cancer quietly threatening my life unseen, they don’t know anything’s wrong. Thank goodness I have cancer instead.
Living in a war zone and fearing for the life of my children every waking moment. Worse than cancer.
The other day I saw a woman at the supermarket with a hideous haircut. I thought to myself I’d rather be bald than have her haircut. Who said facing death made you deep and philosophical? A friend of mine told me, “I’ve been bald since I was 23. At least YOUR hair will grow back someday!” Yes, things could be worse, much worse. Thank goodness I have cancer instead.
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