I don't spend my time asking "Why Me?" because that is fruitless. In truth, I don't ask why me? because I am not a person who sees more than 10 minutes into the future. When asked what my five-year plan is, or where I see myself in the future, the answer is always, "I don't know," which never bodes well in a job interview by the way, and if you're asked that question you should have a better answer than I do. So I think that I don't lament my situation because I don't have a picture of it in the wider world, or as something that affects my five-year plan, or as something that changes my outlook. So many people say that they are changed by cancer, but this is probably because they are living for something ... something what? Something beyond what they can attain? Something that has no meaning for them? I have heard that after cancer, some people will only do work that means something to them, they don't want to waste their time any more.
How does it happen that people waste their lives? How do they wake up and find themselves extremely ill and then say, "Well, I'm never doing that again!" and then set off to change their lives? Why weren't they living in a way that made them happy before they got sick? Is it that they get caught up in expectations? Maybe it is...maybe their families or their spouses or their own ideas of where they should be put them in places that they don't like.
Me, I've done some stuff that I didn't enjoy, sure. I didn't love all aspects of going to school and getting a doctorate, and I didn't always love being a chemistry professor although I loved it more than I didn't love it. Given the opportunity, I dumped it...maybe for the thrill of change, maybe because I was only doing it to give myself an identity. Not doing it anymore was exciting too, I got to be really involved in some volunteer work, I was on EI and I'd never done that before, and I got to think about other things that I might like to do. Then I got this job offer, and I have the most fun job in science ever, and I love the work I do. Did I have to have a five-year (or a ten-year or however many years) plan to get here? Sort of, I guess. I had to have a big degree to do what I do. I got a big degree so that I'd be free of too many people telling me what to do, so if that's a plan, I had it. Otherwise though, I could never have predicted that I'd be where I am.
I might only have been able to predict that I'd be doing something that I wanted to do.
So no, I don't complain about having cancer because it's ruining or changing my life, except that I'm now mutilated from the surgery, bald from the chemotherapy, often nauseous, constipated and have raging headaches that don't let me sleep, or I'm so drowsy from anti-nausea meds that I pass out mid-sentence, I don't carry on a clear conversation and my brain is half-fried but hey, really, I don't complain. I do, I do complain about the moments, and when they're gone, they're out of my head. There are too many other things to do than complain, and besides, and I've said this many times, so many people are suffering far more than I am. So many people don't recover, and my prognosis is excellent and therefore I will make a full recovery and life will go on much as it did before (except for the whole mutilation thing). I don't complain, mostly because I can't. In the big scheme of things, I'm getting off easy.
Sunday, August 30, 2009
Wednesday, August 26, 2009
hairless
My hair fell out, two weeks to the day after the first treatment. So now I am bald, but I have a really nice reddish light brown wig that a lot of people don't realize is a wig.
When I told people that my hair would fall out, they usually said, "Oh no. A lot of people don't lose their hair, so maybe you won't." But no, I was promised hair loss, and hair loss happened. I had to tell these well-meaning people that my hair was definitely going to fall out, and they were much sadder about it than I was, possibly because they look at me and I only look at me in the mirror. My hair is gone, but it'll come back, no big deal.
Going to a wig master is a good idea, if you have some extra health coverage to pay said master. I happen to have some coverage, but even if you don't, a visit to a wig master might not cost you all that much, if anything. He or she will assist you with picking colours and cuts, and they will cut the wig that you choose to your liking. Cutting the hair on a wig is nothing like cutting the hair on a human head, so if your wig person misses a small spot, don't take scissors to the thing yourself, you might very well end up with a big hole at that spot. Wig hair does not grow back! You must also never wear the thing while cooking, because if the thing is singed, you are sunk. No hair dryers or curling irons....ah but wait, I am talking about synthetic wigs. I still think you have to keep a human hair wig out of the kitchen if you're cooking, but you do have to style a human hair wig. They are apparently also very heavy, while my synthetic wig weighs nothing. Getting used to them is a bit of a problem as they have elastic and they can be a bit hot, but at the same time, it's just something you get used to. Eventually.
Some people will want to rock the bald look, and I am totally in favour of that. Me, I look okay sans hair, but my kids don't like it, so at home I wear a scarf (I have several...Winners had a sale) and outside I wear the wig, because I don't want the attention that baldness garners. Still, I like it, and it's summer so I'm not cold at night when I don't have anything on my head. We'll see how that is in November.
This isn't a light post. It's late, I've taken a dose of steroids today and I'm tired but not quite tired enough to go to bed. Round #2 tomorrow. It induces some anxiety, but at the same time, it means I'm half done. Only four rounds total, not so bad compared to what so many others have to do, and how so many other people suffer. I am surrounded by good friends and family members who are willing to travel and sit here with me for a week while I'm unpleasantly ill. Friends who are taking the kids this weekend to their cottage. I am blessed, quite frankly. It's a nice feeling.
When I told people that my hair would fall out, they usually said, "Oh no. A lot of people don't lose their hair, so maybe you won't." But no, I was promised hair loss, and hair loss happened. I had to tell these well-meaning people that my hair was definitely going to fall out, and they were much sadder about it than I was, possibly because they look at me and I only look at me in the mirror. My hair is gone, but it'll come back, no big deal.
Going to a wig master is a good idea, if you have some extra health coverage to pay said master. I happen to have some coverage, but even if you don't, a visit to a wig master might not cost you all that much, if anything. He or she will assist you with picking colours and cuts, and they will cut the wig that you choose to your liking. Cutting the hair on a wig is nothing like cutting the hair on a human head, so if your wig person misses a small spot, don't take scissors to the thing yourself, you might very well end up with a big hole at that spot. Wig hair does not grow back! You must also never wear the thing while cooking, because if the thing is singed, you are sunk. No hair dryers or curling irons....ah but wait, I am talking about synthetic wigs. I still think you have to keep a human hair wig out of the kitchen if you're cooking, but you do have to style a human hair wig. They are apparently also very heavy, while my synthetic wig weighs nothing. Getting used to them is a bit of a problem as they have elastic and they can be a bit hot, but at the same time, it's just something you get used to. Eventually.
Some people will want to rock the bald look, and I am totally in favour of that. Me, I look okay sans hair, but my kids don't like it, so at home I wear a scarf (I have several...Winners had a sale) and outside I wear the wig, because I don't want the attention that baldness garners. Still, I like it, and it's summer so I'm not cold at night when I don't have anything on my head. We'll see how that is in November.
This isn't a light post. It's late, I've taken a dose of steroids today and I'm tired but not quite tired enough to go to bed. Round #2 tomorrow. It induces some anxiety, but at the same time, it means I'm half done. Only four rounds total, not so bad compared to what so many others have to do, and how so many other people suffer. I am surrounded by good friends and family members who are willing to travel and sit here with me for a week while I'm unpleasantly ill. Friends who are taking the kids this weekend to their cottage. I am blessed, quite frankly. It's a nice feeling.
Monday, August 17, 2009
If I Could Save Time in a Bottle
Another someone told me to write a book today. Apparently my descriptions of this cancer/surgery/chemo/whatever is yet to come are quite apt. Apparently I am able to define how I feel and convey it in a readable way. Really, I have a hard time imagining that what I am going through is all that difficult. Certainly, I would have rather taken a family holiday this summer rather than ingesting poison, and certainly I would prefer to have my actual brain rather than this chemo-addled one.
All the same, I find I do have a few things to say.
Being a scientist, I was not content with having a physician recommend anything to me in the big fight against cancer. Physicians are smart enough and all, in their way I suppose, but they tend to be very black and white in their recommendations. I don't think they have much choice, but here's a for instance....
When I was given my cancer diagnosis, it was from the surgeon who'd be removing the cancer, not from an oncologist. I would really have preferred to get my information from an oncologist, but the size of the tumor (small) meant that the first thing that would happen is surgery, so to the surgeon I went. She was a lovely woman, and she told me about the tumor and about the statistics of recurrence if I chose a lumpectomy/radiation versus a mastectomy. In fact, the stats say that the recurrence rate is 10% in both cases. Pretty low. Lumpectomy without radiation is higher, at 30%. Not a good choice. A small tumor is less than 2cm, which mine was, so the surgeon was leaning to the lumpectomy option.
Me, I didn't think I'd have an option, firstly. Secondly, it did not make sense to me to make a decision about surgery without knowing more about the cancer itself. How do I know whether it had spread, or whether it was likely to? How did I know that it wasn't a lot bigger or more diffuse than the surgeon thought? At this point, I didn't know anything about breast cancer (other than the obvious: cancer, in the breast)so how could I make a rational decision about what kind of surgery to do?
This was on May 29, with surgery scheduled for June 11. I told her not to change the surgery date, and that I'd have to get back to her. I came home, I looked up invasive lobular carcinoma, and I emailed a bunch of people, family, friends, colleagues (out of province types, those who weren't likely to blab to anyone at work) and found out as much as I could. The breast cancer research people were of course my best resources, the brother of BF1's husband, the most useless (he's a surgeon). The opinions were divided right down the line: those who had not been witness to cancer, who didn't work in the medical field (with the exception of BF1's brother-in-law) or who were concerned with appearance: lumpectomy. Within that group there were other consultations with people who'd chosen the lumpectomy option, and who were satisfied with that choice. The other half? "Cut the traitor off!!" They were hell-bent for the mastectomy, do not pass go, do not collect $200.
And me? I had to listen to reason. Reason says that invasive lobular carcinoma is made up of cells that tend to striate, or that don't tend to stick together in a well-formed clump; they tend to migrate. Thank-you, but small tumor? I don't care, it's all got to go. And it was the scariest decision I've ever made in my life, to option for amputation. Option for mutilation. Option for get rid of all the cancer.
Invasive ductal carcinoma is much more common (occurrence about 85% of the time) and the cells do have the protein that helps them stick together. (can't remember name of said protein, sorry.) I don't have that. My surgeon was surprised that I would choose the more radical option, but for me it was the best choice, the one that gave me most peace of mind. The one that might avoid sweeping radiation, another thing I wasn't keen on, seeing as I've spent most of my scientific life trying to avoid radiation exposure. Just didn't make sense to voluntarily expose myself to that.
Not that I've avoided radiation, but that's another part of this saga.
So my moral here is trust your doctor, but do your homework. Get opinions. Find out as much as you can. I am privileged in that I have lots of academic resources at my fingertips, people as well as literature. I can find out almost anything I want to know, but so many people don't have the resources I have. Make the doctors explain everything to you, more than once. Get an appointment with your GP and have them go over all of this with you. Talk to people, look at websites. I know that the first instinct is to want to hide and deny that any of this is happening, but you need to be part of the decision-making process. You can be a malleable ragdoll later, but not when you first hear about the cancer. Take a stand. Be afraid, but take a stand anyway.
All the same, I find I do have a few things to say.
Being a scientist, I was not content with having a physician recommend anything to me in the big fight against cancer. Physicians are smart enough and all, in their way I suppose, but they tend to be very black and white in their recommendations. I don't think they have much choice, but here's a for instance....
When I was given my cancer diagnosis, it was from the surgeon who'd be removing the cancer, not from an oncologist. I would really have preferred to get my information from an oncologist, but the size of the tumor (small) meant that the first thing that would happen is surgery, so to the surgeon I went. She was a lovely woman, and she told me about the tumor and about the statistics of recurrence if I chose a lumpectomy/radiation versus a mastectomy. In fact, the stats say that the recurrence rate is 10% in both cases. Pretty low. Lumpectomy without radiation is higher, at 30%. Not a good choice. A small tumor is less than 2cm, which mine was, so the surgeon was leaning to the lumpectomy option.
Me, I didn't think I'd have an option, firstly. Secondly, it did not make sense to me to make a decision about surgery without knowing more about the cancer itself. How do I know whether it had spread, or whether it was likely to? How did I know that it wasn't a lot bigger or more diffuse than the surgeon thought? At this point, I didn't know anything about breast cancer (other than the obvious: cancer, in the breast)so how could I make a rational decision about what kind of surgery to do?
This was on May 29, with surgery scheduled for June 11. I told her not to change the surgery date, and that I'd have to get back to her. I came home, I looked up invasive lobular carcinoma, and I emailed a bunch of people, family, friends, colleagues (out of province types, those who weren't likely to blab to anyone at work) and found out as much as I could. The breast cancer research people were of course my best resources, the brother of BF1's husband, the most useless (he's a surgeon). The opinions were divided right down the line: those who had not been witness to cancer, who didn't work in the medical field (with the exception of BF1's brother-in-law) or who were concerned with appearance: lumpectomy. Within that group there were other consultations with people who'd chosen the lumpectomy option, and who were satisfied with that choice. The other half? "Cut the traitor off!!" They were hell-bent for the mastectomy, do not pass go, do not collect $200.
And me? I had to listen to reason. Reason says that invasive lobular carcinoma is made up of cells that tend to striate, or that don't tend to stick together in a well-formed clump; they tend to migrate. Thank-you, but small tumor? I don't care, it's all got to go. And it was the scariest decision I've ever made in my life, to option for amputation. Option for mutilation. Option for get rid of all the cancer.
Invasive ductal carcinoma is much more common (occurrence about 85% of the time) and the cells do have the protein that helps them stick together. (can't remember name of said protein, sorry.) I don't have that. My surgeon was surprised that I would choose the more radical option, but for me it was the best choice, the one that gave me most peace of mind. The one that might avoid sweeping radiation, another thing I wasn't keen on, seeing as I've spent most of my scientific life trying to avoid radiation exposure. Just didn't make sense to voluntarily expose myself to that.
Not that I've avoided radiation, but that's another part of this saga.
So my moral here is trust your doctor, but do your homework. Get opinions. Find out as much as you can. I am privileged in that I have lots of academic resources at my fingertips, people as well as literature. I can find out almost anything I want to know, but so many people don't have the resources I have. Make the doctors explain everything to you, more than once. Get an appointment with your GP and have them go over all of this with you. Talk to people, look at websites. I know that the first instinct is to want to hide and deny that any of this is happening, but you need to be part of the decision-making process. You can be a malleable ragdoll later, but not when you first hear about the cancer. Take a stand. Be afraid, but take a stand anyway.
Friday, August 14, 2009
Well.
Where do I start? How about just blurt it out and be done with it: I have cancer. That is, I had cancer, I've had surgery so now I have less cancer, and I'm having chemotherapy and then radiation therapy so that I will have no cancer. Or virtually no cancer, because there are no guarantees that every cell will die.
So the whole, "Going to write more, going to see more of this or that..." fell by the wayside obviously, as I've been busy with the cancer. Right about when I last wrote anything here, which happened to be the anniversary of my dad's death, which means that no, we cannot go one full year without some kind of upheaval, I was convinced that I had cancer, although it hadn't been proven at that time.
I found a small lump in January, right breast. Being objective, being trained in the sciences, knowing full well what a lump could and couldn't be, I did what any rational, logical, grounded person would do, and denied that any of this could possibly be happening. Knowing full well that I had an appointment scheduled with my doc within the next couple of weeks, I waited to see if she could find it, because if she did, then it was real. Otherwise, I'm off the hook, nothing happened, carry on then. And she found it straightaway, proving once again that denial is bad and stupid, and that using it as a protective mechanism is about as useful as using bacon as a bra.
Mammogram showed nothing on February 4. Whew then, no need to talk about it, no need to say oh, I've got a lump and it showed up on the mammogram, and now I have to worry, because it wasn't there. All a figment of our imaginations. Lalalalalalalala.......but that wasn't quite true and it still bothered me. After a couple of months of indecision, I called my doc back and asked for an ultrasound. That happened on April 9, and so when I last wrote anything here, I already knew that someone of the medical persuasion was worried for me, because the ultrasound technician overreacted, as did the radiologist when he came in to double-check her findings. "I'm going to request that you go for a biopsy as soon as possible," are not the words that calm one's soul. So by April 15, I was waiting to hear about the biopsy date, and kept waiting and waiting for another while, because the report didn't get to my doctor. Why not you ask? Shall we blame the pesky socialist Canadian medical system? (no, please don't do that. It's a good system, we like it, no slagging socialism here.) No, we'll have to blame human error, and the fact that the ultrasound was done late on a Thursday afternoon, Holy Thursday to be exact, foot-washing Thursday, or the Thursday before Good Friday meaning that for some of us, there's a four-day weekend ahead, four days of eating after fasting (for some) or just eating, or just four days not working if you're not of the Christian persuasion. Four days, people. Or at least three. Three days in April, spring is in the air, and three open happy days are ahead.
So yeah, my report didn't go to my doc because it was late the afternoon before a long weekend. By April 15 I was having a conniption, but not talking about the conniption to anybody because that would mean worrying a lot of people who live far away, and there was just no sense in that at all. I did what I always do when things are bad: I don't talk. I don't write, I don't talk, I thrash it out. How am I feeling? What is going on? Do I worry? Whom do I tell? (um, nobody.) Why hasn't the doc called me to tell me about the biopsy? and on and on. I didn't know that the doc hadn't gotten the report until I started nagging the office a week later, and I still didn't hear from her for a few more days because I had to call and get the "good" receptionist who will actually go and look to see if my report was in the office, or if it was maybe just lost in the ether. Which it was, but nobody could confirm that for me. Quite maddening but eventually all worked out and in the big picture, when you're waiting to hear whether or not you have breast cancer what you're really waiting to hear is whether or not you are going to get your boob cut off.
I really have a lot to do here at home right now, but I wanted to pop in and write something. I can't make promises about writing more often, but I can say oh I'll write more often and you can believe me if you so choose. Since I've lied to you in the past, I'd understand your distrust. I'm at a point now where I can think about this process with the cancer in an objective sort of way, so I probably will write more. I will also include a lot of information that I've come across as I've been on this path, and some things I've discovered on my own, and some things from experts in the field, and the like.
One important thing: you can't underestimate the ability of people to drop their entire lives to show up and help you out, even if you aren't sure that you'll need help. Accept all offers. If people say that they'll look after your kids, give them dates on which they can do this. If they say they'll cook, tell them your favourite dishes. If they say, "Just call and let me know what you need," cross them off your list of useful people. People who say this probably want to help, but don't know how to do it. If they don't know how, let them figure it out. You don't have time to help other people, you have to deal with your own situation.
Another important thing: laugh your head off. Cancer isn't funny, but a lot of the stuff around cancer is hilarious. Laugh whenever you can, and laugh to make other people who are worried and afraid for you laugh too. Did I just say don't help other people? Yeah, I know. Don't help bozos who tell you that they meant to call, they meant to help, they meant to whatever, but laugh at them instead. Busy? Ha! I'll show you busy! I still do all the stuff I did before,* but now I do it with CANCER. Beat that! (*disclaimer: I only do about 1/2 of what I did before, because cancer takes up a whole lot of time and energy.)
So the whole, "Going to write more, going to see more of this or that..." fell by the wayside obviously, as I've been busy with the cancer. Right about when I last wrote anything here, which happened to be the anniversary of my dad's death, which means that no, we cannot go one full year without some kind of upheaval, I was convinced that I had cancer, although it hadn't been proven at that time.
I found a small lump in January, right breast. Being objective, being trained in the sciences, knowing full well what a lump could and couldn't be, I did what any rational, logical, grounded person would do, and denied that any of this could possibly be happening. Knowing full well that I had an appointment scheduled with my doc within the next couple of weeks, I waited to see if she could find it, because if she did, then it was real. Otherwise, I'm off the hook, nothing happened, carry on then. And she found it straightaway, proving once again that denial is bad and stupid, and that using it as a protective mechanism is about as useful as using bacon as a bra.
Mammogram showed nothing on February 4. Whew then, no need to talk about it, no need to say oh, I've got a lump and it showed up on the mammogram, and now I have to worry, because it wasn't there. All a figment of our imaginations. Lalalalalalalala.......but that wasn't quite true and it still bothered me. After a couple of months of indecision, I called my doc back and asked for an ultrasound. That happened on April 9, and so when I last wrote anything here, I already knew that someone of the medical persuasion was worried for me, because the ultrasound technician overreacted, as did the radiologist when he came in to double-check her findings. "I'm going to request that you go for a biopsy as soon as possible," are not the words that calm one's soul. So by April 15, I was waiting to hear about the biopsy date, and kept waiting and waiting for another while, because the report didn't get to my doctor. Why not you ask? Shall we blame the pesky socialist Canadian medical system? (no, please don't do that. It's a good system, we like it, no slagging socialism here.) No, we'll have to blame human error, and the fact that the ultrasound was done late on a Thursday afternoon, Holy Thursday to be exact, foot-washing Thursday, or the Thursday before Good Friday meaning that for some of us, there's a four-day weekend ahead, four days of eating after fasting (for some) or just eating, or just four days not working if you're not of the Christian persuasion. Four days, people. Or at least three. Three days in April, spring is in the air, and three open happy days are ahead.
So yeah, my report didn't go to my doc because it was late the afternoon before a long weekend. By April 15 I was having a conniption, but not talking about the conniption to anybody because that would mean worrying a lot of people who live far away, and there was just no sense in that at all. I did what I always do when things are bad: I don't talk. I don't write, I don't talk, I thrash it out. How am I feeling? What is going on? Do I worry? Whom do I tell? (um, nobody.) Why hasn't the doc called me to tell me about the biopsy? and on and on. I didn't know that the doc hadn't gotten the report until I started nagging the office a week later, and I still didn't hear from her for a few more days because I had to call and get the "good" receptionist who will actually go and look to see if my report was in the office, or if it was maybe just lost in the ether. Which it was, but nobody could confirm that for me. Quite maddening but eventually all worked out and in the big picture, when you're waiting to hear whether or not you have breast cancer what you're really waiting to hear is whether or not you are going to get your boob cut off.
I really have a lot to do here at home right now, but I wanted to pop in and write something. I can't make promises about writing more often, but I can say oh I'll write more often and you can believe me if you so choose. Since I've lied to you in the past, I'd understand your distrust. I'm at a point now where I can think about this process with the cancer in an objective sort of way, so I probably will write more. I will also include a lot of information that I've come across as I've been on this path, and some things I've discovered on my own, and some things from experts in the field, and the like.
One important thing: you can't underestimate the ability of people to drop their entire lives to show up and help you out, even if you aren't sure that you'll need help. Accept all offers. If people say that they'll look after your kids, give them dates on which they can do this. If they say they'll cook, tell them your favourite dishes. If they say, "Just call and let me know what you need," cross them off your list of useful people. People who say this probably want to help, but don't know how to do it. If they don't know how, let them figure it out. You don't have time to help other people, you have to deal with your own situation.
Another important thing: laugh your head off. Cancer isn't funny, but a lot of the stuff around cancer is hilarious. Laugh whenever you can, and laugh to make other people who are worried and afraid for you laugh too. Did I just say don't help other people? Yeah, I know. Don't help bozos who tell you that they meant to call, they meant to help, they meant to whatever, but laugh at them instead. Busy? Ha! I'll show you busy! I still do all the stuff I did before,* but now I do it with CANCER. Beat that! (*disclaimer: I only do about 1/2 of what I did before, because cancer takes up a whole lot of time and energy.)
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