New math, my results and a potential solution to the parking problem
Posted By SUE HENDLER
May 2009
I get a fair number of comments on this column. Some are heartwarming and supportive. Others are not. Still others give me pause, as they give me more, rather than less, material over which to ruminate (spoken as a true vegetarian).
The most recent instance of the last of these was a response to my "wish list" column ("At first, cancer centre seemed foreign; now it seems homey," April 3). Alastair Lamb and Anne Smith wrote a letter to the editor ("Cancer centre improvements meet columnist's 'wish list,' " April 22) in which they documented how most of the things I had wished for were, in fact, planned in the ongoing expansion of the cancer centre.
It was great to know that some of the things I thought could enhance the lives and treatment of those of us with cancer were actually being planned for. But there was one stark incongruence that I have been thinking about for the past while.
In my column, I made a big deal of how the people at the cancer centre make all the difference -- especially in the midst of inadequate physical facilities. In their response, Lamb and Smith emphasized the improvement of these facilities.
But that made me think back to a story in the Whig from a while ago. It had the provocative headline: "KGH to cut jobs, beds." That story was all the rage in the cancer centre waiting rooms the day it came out.
OK, so I know I'm a political person. I have lots of opinions as to how the world ought to be run, and lots of arguments with how parts of it are being run. But I didn't set out to write this column in order to express political viewpoints. While I believe that values are implicit or explicit in everything we do, and I knew I couldn't escape expressing values in my columns, it wasn't my intention to advocate for or against particular ideas, policies or programs in this space. But the juxtaposition of these two stories ended all that.
In other words, the contrast between these two positions struck me, as I hope it does you. How can the same, or smaller, numbers of staff provide good service to increased numbers of clients (from 75,000 to 105,000, using Lamb and Smith's own numbers) in a space that is almost twice as big? Hmm ... must be the new math. I must have been sick the day they covered that in school.
Speaking of sick, after several weeks of good news I got a less-positive report before my last chemotherapy treatment. I had had a CT scan and, for the first time, had not called my oncologist for results. I'm not sure why; maybe I didn't want to spoil things, as I was feeling pretty good but realized I had never gotten a good report after a scan. It was always, in the words of my oncologist, "not good" or a "mixed bag." Maybe I wasn't worried because my blood work had been encouraging. Maybe I was in denial.
Anyway, I didn't call but, for some reason, wasn't surprised when I got the "mixed bag" verdict. Some liver lesions are smaller or gone, but several are bigger. Bone lesions look like they're healing. Lung lesions look stable. Tumour marker counts are way up ... again. Sigh.
So what does this mean? It could just be an unexplained blip in my treatment. It could mean that the chemotherapy isn't working anymore. It could even be a positive thing in that the tumour marker could signify dying cancer cells as opposed to replicating ones. In other words, we don't know.
It's hard to decide what to do given that kind of uncertainty. We could stop this chemotherapy and try another one. We could try something else entirely. Or we could stay with the current therapy for one or two more cycles and see what happens.
I've decided to go with the last of these options. Two oncologists recommended it, it makes sense to me not to give up on something that has been effective -- at least not without more conclusive evidence -- and I really don't want to go through the uncertainty of starting another sort of therapy with a whole new set of side effects and a whole new question as to its efficacy -- or not.
The day I got this news, I drove to my place in the country. I figured that digging in the garden would be therapeutic. While I lay on the grass and took a break from this work, I looked up and saw three -- no, four -- turkey vultures circling overhead. Not yet, I thought. Not yet.
Finally, if you have ever been to the local cancer centre, you'll probably have experienced the frustration of trying to find a parking spot anywhere close to the building. You'll probably have driven in circles for a while and then reconciled yourself to either getting a parking ticket or parking blocks away, or both. Having dealt with this situation for more than a year, I would encourage you to sign an online petition (before July 31) about cancer centre parking: http://www.thepetitionsite.com/2/parking-for-cancer-care. Thanks.
Sue Hendler is a former member of the Whig-Standard's Community Editorial Board. She is contributing regular columns on her experiences while she travels her breast cancer journey.
Showing posts with label Sue Hendler. Show all posts
Showing posts with label Sue Hendler. Show all posts
Monday, May 31, 2010
An open letter to my sister, by Sue Hendler
An open letter to my sister: 'I understand so much better now'
May 15, 2009
Dear Celia:
Happy birthday! It's been almost eight years since you died, so that means you would be turning 52 today. As always, I miss you and hope that wherever you are, if anywhere beyond the container of your ashes, your spirit is more peaceful and content than it was during your last years on this planet.
I've been writing this column in our local newspaper for almost a year. I started doing it a few months after I was diagnosed with metastatic breast cancer. Sometimes I wonder what you would say or think about my writing -- and my cancer -- both in general and in terms of specific columns or topics. I wish we could talk about it.
I'm writing to you because I want you to know that so many things about your illnesses and your behaviour make sense to me now. While I found them frustrating and irritating at the time, I have found myself doing and feeling some of the very things that I couldn't understand back then. So I want you to know that I get it and I'm sorry.
I'm sorry I got frustrated when I drove you around to do your errands. You had particular things that you wanted to get in particular stores and in a particular order. Ever the planner, I just wanted to do everything in the same place -- or at least as much as possible. Driving around southern Florida, where you lived, was never my favourite thing to do, and I wanted to do the least amount of it as possible. Why couldn't you understand and respect that, I wondered. After all, wasn't I doing you the favour of helping you get your errands done? I now know how important it was for you to retain control over at least some parts of your life.
I'm sorry I kept trying to "fix things." While there is a fine line between being helpful and being controlling, I know now that I could have talked with you about how I was experiencing that conflict. We could have come to a place where maybe both of us might have been more comfortable.
I'm sorry I was scared of your illnesses. My own fear helped make me less than supportive at times. I had always been a pretty healthy person, and being around anyone who was ill was difficult for me. That must have not felt too great to you and, boy, do I know what that feels like now!
I'm sorry I didn't make more time for you. It's true you lived far away and I had a job that was pretty demanding. Still, I wish we could have had more time together -- especially now that I see time as the greatest gift we can give each other as friends or family members.
I'm sorry I got impatient when we spoke and you repeated the same thing over and over again. And you weren't on chemotherapy so you couldn't even blame it on chemo-brain! Again, I sure know now what it means to be repetitive and have people say, "Sue, you already told me that."
I'm sorry I didn't realize that being with you while you were so sick was in many ways a gift that I could have accepted more gracefully. I think that I often regarded it more as a chore and something I was giving you instead of a more equitable sharing of time, experiences and feelings.
I'm sorry I criticized your choosing to hang out with people who were sick. While I thought it made sense that it would be better for you to associate more with people who were well, I can now understand how sometimes you wanted to be spending time with people who had experienced situations similar to those with which you were living.
I guess what I'm trying to say with all these examples is that while being really sick and thinking one may be close to death is going to be a unique experience for everyone, there may well be some general trends. Trying to maintain some degree of autonomy and control over one's life falls into this category. Accepting with grace the help of others does, too. As does needing to be listened to and respected.
While it's too late for me to say these things to you directly, it's not too late for me to figure them out and articulate them in whatever form I can. I picture us having this conversation while we are walking on trails in the Everglades. Remember when I found that eastern diamondback rattlesnake? Or when we saw the roseate spoonbills? Or when we drove north to Orange County and saw all those manatees? Those stand out to me as some of the good times we had before you died. But I now think that if we had had this sort of conversation, that would have been a good time, too.
Sue Hendler is a former member of the Whig-Standard's Community Editorial Board. She is contributing regular columns on her experiences while she travels her breast cancer journey.
May 15, 2009
Dear Celia:
Happy birthday! It's been almost eight years since you died, so that means you would be turning 52 today. As always, I miss you and hope that wherever you are, if anywhere beyond the container of your ashes, your spirit is more peaceful and content than it was during your last years on this planet.
I've been writing this column in our local newspaper for almost a year. I started doing it a few months after I was diagnosed with metastatic breast cancer. Sometimes I wonder what you would say or think about my writing -- and my cancer -- both in general and in terms of specific columns or topics. I wish we could talk about it.
I'm writing to you because I want you to know that so many things about your illnesses and your behaviour make sense to me now. While I found them frustrating and irritating at the time, I have found myself doing and feeling some of the very things that I couldn't understand back then. So I want you to know that I get it and I'm sorry.
I'm sorry I got frustrated when I drove you around to do your errands. You had particular things that you wanted to get in particular stores and in a particular order. Ever the planner, I just wanted to do everything in the same place -- or at least as much as possible. Driving around southern Florida, where you lived, was never my favourite thing to do, and I wanted to do the least amount of it as possible. Why couldn't you understand and respect that, I wondered. After all, wasn't I doing you the favour of helping you get your errands done? I now know how important it was for you to retain control over at least some parts of your life.
I'm sorry I kept trying to "fix things." While there is a fine line between being helpful and being controlling, I know now that I could have talked with you about how I was experiencing that conflict. We could have come to a place where maybe both of us might have been more comfortable.
I'm sorry I was scared of your illnesses. My own fear helped make me less than supportive at times. I had always been a pretty healthy person, and being around anyone who was ill was difficult for me. That must have not felt too great to you and, boy, do I know what that feels like now!
I'm sorry I didn't make more time for you. It's true you lived far away and I had a job that was pretty demanding. Still, I wish we could have had more time together -- especially now that I see time as the greatest gift we can give each other as friends or family members.
I'm sorry I got impatient when we spoke and you repeated the same thing over and over again. And you weren't on chemotherapy so you couldn't even blame it on chemo-brain! Again, I sure know now what it means to be repetitive and have people say, "Sue, you already told me that."
I'm sorry I didn't realize that being with you while you were so sick was in many ways a gift that I could have accepted more gracefully. I think that I often regarded it more as a chore and something I was giving you instead of a more equitable sharing of time, experiences and feelings.
I'm sorry I criticized your choosing to hang out with people who were sick. While I thought it made sense that it would be better for you to associate more with people who were well, I can now understand how sometimes you wanted to be spending time with people who had experienced situations similar to those with which you were living.
I guess what I'm trying to say with all these examples is that while being really sick and thinking one may be close to death is going to be a unique experience for everyone, there may well be some general trends. Trying to maintain some degree of autonomy and control over one's life falls into this category. Accepting with grace the help of others does, too. As does needing to be listened to and respected.
While it's too late for me to say these things to you directly, it's not too late for me to figure them out and articulate them in whatever form I can. I picture us having this conversation while we are walking on trails in the Everglades. Remember when I found that eastern diamondback rattlesnake? Or when we saw the roseate spoonbills? Or when we drove north to Orange County and saw all those manatees? Those stand out to me as some of the good times we had before you died. But I now think that if we had had this sort of conversation, that would have been a good time, too.
Sue Hendler is a former member of the Whig-Standard's Community Editorial Board. She is contributing regular columns on her experiences while she travels her breast cancer journey.
Wednesday, September 16, 2009
Who am I? More specifically, who am I now?
Posted By SUE HENDLER
Feb 6, 2009
TALKING ABOUT CHANGES TO ONE'S identity is pretty common among people diagnosed with cancer. We can look different, act different and feel different. Our looks can be altered by surgery, stress, radiation, chemotherapy and, sometimes, voluntary changes if we want to shake up our appearances a bit. Our actions can change because we have varying amounts of time, strength, stamina and, perhaps, courage and flexibility. And our emotions might change because of medications and all of the above.
While most people around me insist that I am still the same person -I just now have a "condition" -it often doesn't feel that way to me. Instead, it feels as if cancer has rocked my foundation, and I've often said that I don't know how to be this (new) person.
My friend, Susan Babbitt, and I often talk about this issue of identity. She was diagnosed, over five years ago, with sarcoma, an aggressive cancer of the soft tissue that began and recurred in her leg, and then spread. We have been on our respective journeys
for different periods of time and in different ways, but I often seek her insight as to how she has adapted to cancer, and her wisdom has been an important resource in my living with cancer the best I can.
Sue:Susan, you've had a bunch of surgeries, radiation and chemotherapy. You've so far outlived a pretty dire prognosis. How would you describe who you are now in comparison to five years ago?
Susan:I have the same interests and commitments, the same personality, but much has changed for practical reasons. At first, I just wanted to "get my life back." But I eventually realized that if I didn't want fear, disability and cancer to rob me of my life, I had to think differently. This has affected my expectations and priorities.
Sue:How so? What has changed?
Susan:Cancer took away so much. I had never been ill before. I'd always had health, strength and energy, and I loved physical activity. And then, from one day to the next, just because of a lump on my leg, I became a seriously ill person. Eventually I couldn't ride a bike or ski, and now I can hardly walk. My life became so bizarre, with so many hospital stays and so much uncertainty, that I learned to look just at what was happening and not to think about what I wanted or expected to be happening. This requires mental discipline but it is possible. Again, it's practical. I had to accept the arbitrariness of disease. The result is that, although I feel like the same person, I no longer have much sense of that identity, or so it seems. I do and believe in the same things, but I don't think much about what I do, or whether and how it matters.
Sue:What do you mean when you say that you can't think about what you do or if it matters?
Susan:We've talked about how there's no script for living with the threat of death. Even though I teach philosophy, I had no resources to know how to face death. The challenge is: How do I not lose my life just because I'm losing my life? And I've found that as I live with what I have - which is the present -I lose not only the future, but also the past, or at least it loses importance. Perhaps that's because the past is tied to expectations for the future. It tells us something about who we are and what we can offer. Thomas Merton said that life is never absurd when you just live it, but it is always absurd when you watch yourself live it. Life with cancer is absurd enough, as you and I have laughed about. So I don't analyse what's happening. Perhaps that sounds odd, from an academic.
Sue:Not odd -just hard. In some ways, my probably having less time than I would have thought makes each remaining moment both more and less important. It's a strange tightrope to walk. Just when I think I've mastered it, cancer throws another curve ball and I find myself fighting to find my balance again.
Susan:I learned through the practice of meditation -just observing the arising and passing away of all aspects of my own being, and recognizing experientially that this is the nature of the whole universe. This serves as a tool. A focus on importance brings back the fear of losing it all -for me, at least. I lose that fear when I live just with what I have.
Sue:So, if we return to how we started this column, how would you describe your identity now?
Susan:I'd say that I now identify as part of the unfolding of a beautifully complex and mysterious universe, in love with the day-by-day ordinariness of my temporary existence.
Sue:Amidst all the ugliness of cancer, that is really beautiful, Susan. Thank you for sharing it with me.
¦ Sue Hendler is a former member of the Whig-Standard's Community Editorial Board. She is contributing regular columns on her experiences while she travels her breast cancer journey. Susan Babbitt teaches in the philosophy department at Queen's University.
Feb 6, 2009
TALKING ABOUT CHANGES TO ONE'S identity is pretty common among people diagnosed with cancer. We can look different, act different and feel different. Our looks can be altered by surgery, stress, radiation, chemotherapy and, sometimes, voluntary changes if we want to shake up our appearances a bit. Our actions can change because we have varying amounts of time, strength, stamina and, perhaps, courage and flexibility. And our emotions might change because of medications and all of the above.
While most people around me insist that I am still the same person -I just now have a "condition" -it often doesn't feel that way to me. Instead, it feels as if cancer has rocked my foundation, and I've often said that I don't know how to be this (new) person.
My friend, Susan Babbitt, and I often talk about this issue of identity. She was diagnosed, over five years ago, with sarcoma, an aggressive cancer of the soft tissue that began and recurred in her leg, and then spread. We have been on our respective journeys
for different periods of time and in different ways, but I often seek her insight as to how she has adapted to cancer, and her wisdom has been an important resource in my living with cancer the best I can.
Sue:Susan, you've had a bunch of surgeries, radiation and chemotherapy. You've so far outlived a pretty dire prognosis. How would you describe who you are now in comparison to five years ago?
Susan:I have the same interests and commitments, the same personality, but much has changed for practical reasons. At first, I just wanted to "get my life back." But I eventually realized that if I didn't want fear, disability and cancer to rob me of my life, I had to think differently. This has affected my expectations and priorities.
Sue:How so? What has changed?
Susan:Cancer took away so much. I had never been ill before. I'd always had health, strength and energy, and I loved physical activity. And then, from one day to the next, just because of a lump on my leg, I became a seriously ill person. Eventually I couldn't ride a bike or ski, and now I can hardly walk. My life became so bizarre, with so many hospital stays and so much uncertainty, that I learned to look just at what was happening and not to think about what I wanted or expected to be happening. This requires mental discipline but it is possible. Again, it's practical. I had to accept the arbitrariness of disease. The result is that, although I feel like the same person, I no longer have much sense of that identity, or so it seems. I do and believe in the same things, but I don't think much about what I do, or whether and how it matters.
Sue:What do you mean when you say that you can't think about what you do or if it matters?
Susan:We've talked about how there's no script for living with the threat of death. Even though I teach philosophy, I had no resources to know how to face death. The challenge is: How do I not lose my life just because I'm losing my life? And I've found that as I live with what I have - which is the present -I lose not only the future, but also the past, or at least it loses importance. Perhaps that's because the past is tied to expectations for the future. It tells us something about who we are and what we can offer. Thomas Merton said that life is never absurd when you just live it, but it is always absurd when you watch yourself live it. Life with cancer is absurd enough, as you and I have laughed about. So I don't analyse what's happening. Perhaps that sounds odd, from an academic.
Sue:Not odd -just hard. In some ways, my probably having less time than I would have thought makes each remaining moment both more and less important. It's a strange tightrope to walk. Just when I think I've mastered it, cancer throws another curve ball and I find myself fighting to find my balance again.
Susan:I learned through the practice of meditation -just observing the arising and passing away of all aspects of my own being, and recognizing experientially that this is the nature of the whole universe. This serves as a tool. A focus on importance brings back the fear of losing it all -for me, at least. I lose that fear when I live just with what I have.
Sue:So, if we return to how we started this column, how would you describe your identity now?
Susan:I'd say that I now identify as part of the unfolding of a beautifully complex and mysterious universe, in love with the day-by-day ordinariness of my temporary existence.
Sue:Amidst all the ugliness of cancer, that is really beautiful, Susan. Thank you for sharing it with me.
¦ Sue Hendler is a former member of the Whig-Standard's Community Editorial Board. She is contributing regular columns on her experiences while she travels her breast cancer journey. Susan Babbitt teaches in the philosophy department at Queen's University.
When you're a cancer patient, there's a lot of waiting
Posted By SUE HENDLER, Feb 20, 2009
Waiting for godot is the title of a play written by Samuel Beckett. The play is focused on the time that passes as two men await the arrival of someone called Godot. Godot never shows up and the men are left to decide whether they will wait again the following day, as a young boy tells them that the elusive Godot will certainly come then.
I was reminded of Beckett's play this week as I waited for the results of various tests that will determine how my chemotherapy regime is working. Like this play, life with cancer is filled with waiting. Waiting to be seen by doctors. Waiting for treatment. Waiting for pain or discomfort to go away. Waiting for tests. And, especially, waiting for test results.
Those of us with cancer typically undergo a variety of tests. There are blood tests that show how my organs are working and that measure the levels of the tumour markers my cancer cells produce. There are specialized tests, like the Multiple Gated Acquisition Scan (MUGA), that make videos of my heart and demonstrate whether the chemotherapy treatments I'm on are compromising its functioning.
This is one type of imaging; there are three others that I experience pretty regularly.
Magnetic resonance imaging, or MRI, allows my doctors to see detailed three-dimensional pictures of my spinal cord or other body part(s) of interest. Bone scans demonstrate levels of metabolic activity throughout my skeleton. They give rise to pictures showing the absence or concentration of a radioactive tracer that suggest where my bones are either rebuilding or breaking down. And there are computerized axial tomography, or CT, scans that generate two-dimensional cross-sections often focused on soft tissues and organs, like my lungs and liver.
Most of these tests require the use of specialized equipment and trained personnel. Some also require particular dyes or radioactive isotopes that allow for the collection of different sorts of data based on the staining or absorption rates of these tracer elements. All of these things - equipment, people and tracers - are, or can be, in short supply, so it often takes a while to be scheduled for a given test.
Once a test takes place, the waiting for results starts. While my doctors can access MRI or CT scan images on their computer almost immediately after the pictures have been taken, they usually prefer to wait to contact me until they've received a technical report in which the images are analysed and compared with earlier tests.
I have found that I not only wait with bated breath for my own tests results, I also wait for those of my friends who are living with cancer. My friend, Susan, gets a CT scan every three months to gauge the state of her cancer. Then there's Jackie, who gets a colonoscopy every year to assess whether any stray cancer cells were left after her successful colon surgery. A new friend, Chris in Ottawa, has breast cancer that has metastasized to her lungs, and she recently had a CT scan as part of her ongoing treatment.
While my oncologists say they don't treat numbers or images, the tests are still an important part of my living with cancer, as they will be used in conjunction with how I look and how I'm feeling in order to figure out how best to treat my condition. And the same applies to my friends and their tests.
While I wait to hear about my latest tests and any subsequent decisions about my chemotherapy, I play Sudoku, wash dishes and brush my cats. I talk with friends and sort my recycling. I also think more about Beckett's play. There are a lot of interpretations of Waiting for Godot. Is Godot a real person? Is Godot actually supposed to be God? Or is Godot not a person or being at all but, instead, a metaphor for something else entirely? Pleasure? Life? Death? Meaning itself ?
Conversely, or at least on the surface, my waiting for things like test results seems unambiguous. If blood work shows that my tumour marker has gone down, that's good news. If my CT scan suggests that various lesions are bigger, well, that's bad news. There is some truth to this, but, it seems to me, there are even bigger issues at stake. Do I want my life to be summarized as a play called "Waiting for Cancer Tests Results"? If not, then I have to find a way of appreciating the fact that the tests are important but not allow them to take over whatever time I have on this planet.
It's hard to do, but I'd really like a play about my life to have a more interesting title. "A Woman of at Least Some Importance," perhaps (with apologies to Oscar Wilde)?
* Sue Hendler is a former member of the Whig-Standard's Community Editorial Board. She is contributing regular columns on her experiences while she travels her breast cancer journey.
Waiting for godot is the title of a play written by Samuel Beckett. The play is focused on the time that passes as two men await the arrival of someone called Godot. Godot never shows up and the men are left to decide whether they will wait again the following day, as a young boy tells them that the elusive Godot will certainly come then.
I was reminded of Beckett's play this week as I waited for the results of various tests that will determine how my chemotherapy regime is working. Like this play, life with cancer is filled with waiting. Waiting to be seen by doctors. Waiting for treatment. Waiting for pain or discomfort to go away. Waiting for tests. And, especially, waiting for test results.
Those of us with cancer typically undergo a variety of tests. There are blood tests that show how my organs are working and that measure the levels of the tumour markers my cancer cells produce. There are specialized tests, like the Multiple Gated Acquisition Scan (MUGA), that make videos of my heart and demonstrate whether the chemotherapy treatments I'm on are compromising its functioning.
This is one type of imaging; there are three others that I experience pretty regularly.
Magnetic resonance imaging, or MRI, allows my doctors to see detailed three-dimensional pictures of my spinal cord or other body part(s) of interest. Bone scans demonstrate levels of metabolic activity throughout my skeleton. They give rise to pictures showing the absence or concentration of a radioactive tracer that suggest where my bones are either rebuilding or breaking down. And there are computerized axial tomography, or CT, scans that generate two-dimensional cross-sections often focused on soft tissues and organs, like my lungs and liver.
Most of these tests require the use of specialized equipment and trained personnel. Some also require particular dyes or radioactive isotopes that allow for the collection of different sorts of data based on the staining or absorption rates of these tracer elements. All of these things - equipment, people and tracers - are, or can be, in short supply, so it often takes a while to be scheduled for a given test.
Once a test takes place, the waiting for results starts. While my doctors can access MRI or CT scan images on their computer almost immediately after the pictures have been taken, they usually prefer to wait to contact me until they've received a technical report in which the images are analysed and compared with earlier tests.
I have found that I not only wait with bated breath for my own tests results, I also wait for those of my friends who are living with cancer. My friend, Susan, gets a CT scan every three months to gauge the state of her cancer. Then there's Jackie, who gets a colonoscopy every year to assess whether any stray cancer cells were left after her successful colon surgery. A new friend, Chris in Ottawa, has breast cancer that has metastasized to her lungs, and she recently had a CT scan as part of her ongoing treatment.
While my oncologists say they don't treat numbers or images, the tests are still an important part of my living with cancer, as they will be used in conjunction with how I look and how I'm feeling in order to figure out how best to treat my condition. And the same applies to my friends and their tests.
While I wait to hear about my latest tests and any subsequent decisions about my chemotherapy, I play Sudoku, wash dishes and brush my cats. I talk with friends and sort my recycling. I also think more about Beckett's play. There are a lot of interpretations of Waiting for Godot. Is Godot a real person? Is Godot actually supposed to be God? Or is Godot not a person or being at all but, instead, a metaphor for something else entirely? Pleasure? Life? Death? Meaning itself ?
Conversely, or at least on the surface, my waiting for things like test results seems unambiguous. If blood work shows that my tumour marker has gone down, that's good news. If my CT scan suggests that various lesions are bigger, well, that's bad news. There is some truth to this, but, it seems to me, there are even bigger issues at stake. Do I want my life to be summarized as a play called "Waiting for Cancer Tests Results"? If not, then I have to find a way of appreciating the fact that the tests are important but not allow them to take over whatever time I have on this planet.
It's hard to do, but I'd really like a play about my life to have a more interesting title. "A Woman of at Least Some Importance," perhaps (with apologies to Oscar Wilde)?
* Sue Hendler is a former member of the Whig-Standard's Community Editorial Board. She is contributing regular columns on her experiences while she travels her breast cancer journey.
Tuesday, September 15, 2009
Don't tell me I should be positive in the face of my illness
Don't tell me I should be positive in the face of my illness
Posted By SUE HENDLER
March 20, 2009
I've written a couple of columns about questions I have been asked. If I had to say what one thing I had been told, not asked, it's the importance of being positive. This has, to be polite, started to irk me. Why? There are lots of reasons.
While my surgeon once told me that some of his patients had said cancer was the best thing that ever happened to them, I think this must have involved curable, turn-your-life-around kinds of cancer. I seriously doubt anyone would laud the benefits of a cancer that, at least 97% of the time, is going to kill you. It's hard to think positively about a disease that is almost always terminal. It's also difficult to glue rose-coloured glasses to your head and assert that you are going to beat the odds, no matter how much those odds are stacked against you. So, as someone who tends to be a realist, it has been important for me to acknowledge that I will probably live a lot less time than I thought I would and that cancer is to blame for this.
Second, it's easy to feel like a failure if you can't do this thing that everyone tells you that you should be doing. That is, when people tell me to be positive or think positively, and then I have moments or days when this seem impossible because I feel too scared or sad or angry, I start to see myself as having failed: failed to believe I will get well, failed to smile and be cheery, and failed to be brave in the face of adversity.
So, the bottom line is that not only have I failed to be healthy, I have also failed to stay positive in the face of a serious illness. I don't know about you, but I'm not good at seeing myself as a failure.
The third reason follows from the second. If I don't do something that will help me get better, then I can be blamed for not getting better. In other words, if people are right in asserting that being positive is important in healing, then not being positive can actually be a reason for getting sick or staying sick. So, I am responsible for my cancer! Clearly, this is one of the last things I need to hear right now, and it certainly wouldn't help me be positive (and therefore supposedly heal myself ).
My friend, Christine, has suggested that maybe people want me to be positive so I don't show them how upset I really am. This may help them feel better -- or at least less uncomfortable -- when they are around me. If this is true, I am pretty sure it's not a conscious thing, in that I think the people telling me to be positive really do want me to get better and beat this thing.
Whether being positive is good for people around a sick person, or for the sick person him or herself, the empirical question remains as to whether optimism actually helps someone get well.
A recent study in the journal Cancerconcluded that "emotional status was not associated with survival rate" in people with certain kinds of cancer. When this was reported in the news during the fall of 2007, many people responded with anger, disappointment and a sense of betrayal. We are so wedded to the idea that thinking and acting positively is important, even the suggestion that this could be wrong generates a strong emotional reaction.
Regardless of the medical data, I think it makes sense that enjoying our lives makes for more enjoyable lives. Irrespective of the amount of time we have on this planet, how do we want to live? To a certain extent, I think we can choose whether to be caustic, critical and pessimistic or pleasant, constructive and joyful. But there will always be times in which anger and/or sadness take over.
In my case, these are days in which my pain level makes moving uncomfortable, the sores in my mouth from the chemotherapy make eating difficult, and my cats insist on eating house plants and then barfing all over the place -- especially on the bed because, if you have to throw up, why not do it in the most comfortable place possible?
I don't need to be told that my feelings of irritation and negativity at these times may fester even if they don't actually shorten my life. I'll figure that out for myself and hopefully get to a more "positive" place in time.
After my diagnosis, my mother asked me to tell her when she said something wrong or something that was not helpful. While I won't say it's wrong, I've definitely asked her, and anyone else who will listen, to avoid telling me to be positive. I'm pretty sure -- no, I'm positive -- that would make my life easier, and maybe even better.
Sue Hendler is a former member of the Whig-Standard's Community Editorial Board. She is contributing regular columns on her experiences while she travel her breast cancer journey.
Posted By SUE HENDLER
March 20, 2009
I've written a couple of columns about questions I have been asked. If I had to say what one thing I had been told, not asked, it's the importance of being positive. This has, to be polite, started to irk me. Why? There are lots of reasons.
While my surgeon once told me that some of his patients had said cancer was the best thing that ever happened to them, I think this must have involved curable, turn-your-life-around kinds of cancer. I seriously doubt anyone would laud the benefits of a cancer that, at least 97% of the time, is going to kill you. It's hard to think positively about a disease that is almost always terminal. It's also difficult to glue rose-coloured glasses to your head and assert that you are going to beat the odds, no matter how much those odds are stacked against you. So, as someone who tends to be a realist, it has been important for me to acknowledge that I will probably live a lot less time than I thought I would and that cancer is to blame for this.
Second, it's easy to feel like a failure if you can't do this thing that everyone tells you that you should be doing. That is, when people tell me to be positive or think positively, and then I have moments or days when this seem impossible because I feel too scared or sad or angry, I start to see myself as having failed: failed to believe I will get well, failed to smile and be cheery, and failed to be brave in the face of adversity.
So, the bottom line is that not only have I failed to be healthy, I have also failed to stay positive in the face of a serious illness. I don't know about you, but I'm not good at seeing myself as a failure.
The third reason follows from the second. If I don't do something that will help me get better, then I can be blamed for not getting better. In other words, if people are right in asserting that being positive is important in healing, then not being positive can actually be a reason for getting sick or staying sick. So, I am responsible for my cancer! Clearly, this is one of the last things I need to hear right now, and it certainly wouldn't help me be positive (and therefore supposedly heal myself ).
My friend, Christine, has suggested that maybe people want me to be positive so I don't show them how upset I really am. This may help them feel better -- or at least less uncomfortable -- when they are around me. If this is true, I am pretty sure it's not a conscious thing, in that I think the people telling me to be positive really do want me to get better and beat this thing.
Whether being positive is good for people around a sick person, or for the sick person him or herself, the empirical question remains as to whether optimism actually helps someone get well.
A recent study in the journal Cancerconcluded that "emotional status was not associated with survival rate" in people with certain kinds of cancer. When this was reported in the news during the fall of 2007, many people responded with anger, disappointment and a sense of betrayal. We are so wedded to the idea that thinking and acting positively is important, even the suggestion that this could be wrong generates a strong emotional reaction.
Regardless of the medical data, I think it makes sense that enjoying our lives makes for more enjoyable lives. Irrespective of the amount of time we have on this planet, how do we want to live? To a certain extent, I think we can choose whether to be caustic, critical and pessimistic or pleasant, constructive and joyful. But there will always be times in which anger and/or sadness take over.
In my case, these are days in which my pain level makes moving uncomfortable, the sores in my mouth from the chemotherapy make eating difficult, and my cats insist on eating house plants and then barfing all over the place -- especially on the bed because, if you have to throw up, why not do it in the most comfortable place possible?
I don't need to be told that my feelings of irritation and negativity at these times may fester even if they don't actually shorten my life. I'll figure that out for myself and hopefully get to a more "positive" place in time.
After my diagnosis, my mother asked me to tell her when she said something wrong or something that was not helpful. While I won't say it's wrong, I've definitely asked her, and anyone else who will listen, to avoid telling me to be positive. I'm pretty sure -- no, I'm positive -- that would make my life easier, and maybe even better.
Sue Hendler is a former member of the Whig-Standard's Community Editorial Board. She is contributing regular columns on her experiences while she travel her breast cancer journey.
Wednesday, January 28, 2009
My decision to take the first-best medicine
My oncologist once said she'd worry if my tumour marker count doubled, but not if it just crept up point by point. Well, it quadrupled over a little more than six weeks. And a CT scan confirmed that the cancer has spread beyond my vertebrae and femur. It looks like the endocrine therapy I've been on for a while - the "mouse poop" shots and Tamoxifen, which together moved me into hot flash city - isn't working so well.
So a decision had to be made. Do I try another hormone therapy such as an aromatase inhibitor, which tries to further eliminate the availability of estrogen to my cancer cells, or do I skip that and head directly to chemo therapy?
Given that my cancer hasn't responded that well to hormone therapy, an aromatase inhibitor is a possibility, but unlikely to be effective. And given that my cancer is chemo-naive (I wish I could go back to being chemo-naive), walloping it with a combination chemotherapy might halt the spread of cancer cells and actually reduce the tumour burden I now have.
I've always had mixed feelings about chemotherapy. For that matter, I 've a lways had mixed feelings about taking any sort of medication. But chemotherapy carries with it an especially large amount of baggage. I don't like the idea of beating down my immune system just when I need it most. I don't relish the injection of stuff that's so toxic, health-care providers have to protect themselves from being in contact with it. And I don't think too positively about the chance of experiencing intense side effects that could well make me weaker, not stronger, in the face of a terminal illness.
I've also read a lot of journal articles that suggest chemotherapy often doesn't significantly prolong the lives of those of us with metastatic breast cancer.
Researchers in Canada and Australia have come up with a decision aid for people facing these sorts of choices. It is in the form of a workbook in which information and questions are presented, and a decision-making structure is suggested. This structure is based on identifying positive factors, such as the possibility of living longer (and why this is important), an improvement of symptoms and a sense of empowerment in terms of doing something to actively fight the disease. One's responses to these factors can be weighed against what many of us see as the negative aspects of chemotherapy - such as uncomfortable and sometimes dangerous side effects, needing tests and having to go to the hospital frequently - and the fact that there is no guarantee the treatment will actually work.
While I haven't seen the actual workbook (it is still being evaluated in anticipation of its adoption by at least some oncologists), I have read a discussion about it in the journal Health Expectations. It helped me organize my thoughts, and it was useful to put myself in the larger context of other women with metastatic breast cancer facing this sort of decision.
Even given all this, though, it really doesn't feel like I have much of a choice. I could stop all treatments and let the disease run its course. I could try an endocrine therapy that is unlikely to work. I could pursue alternative treatments, such as following the raw diet that is all the rage in a lot of popular cancer literature or taking lots of supplements and "natural" remedies when none of these has been proven or supported in the medical literature. Or I could pursue the treatment that represents the current paradigm in cancer medicine. And that's what I've decided to do.
I never thought I would agree to chemotherapy that is unlikely to cure my disease. But now that I have, I'm pretty committed to this course of action. Those of us born under the Aries horoscope sign tend to look for, and thrive on, challenges. My favourite astrologer, Jonathan Cainer, says that us Rams have the "tendency to create a life full of difficulty, just so that ... [we] ... always have something to sort out" ( www.cainer.com). He goes on to say that "there's nothing ... [we] ... can't tackle if ... [we] ... try." I'm now at a time when these traits, long bemoaned by those around me, should come in handy.
It feels like a fortuitous coincidence that, on the night before this challenge was presented to me, Dr. Robert Buckman was featured on CBC Radio's Ideas series. He is an oncologist who also lectures, and he wrote the book Cancer is a Word, Not a Sentence. Laughter, he says, is the second-best medicine. What is the first-best medicine, in his view? Medicine.
I'll have to remember that during my chemotherapy sessions, and as I try to keep my sense of humour intact throughout the next few months of treatment. My friend Margaret's daughter Anna has already offered to draw green eyebrows on my face to replace the ones I'll be losing. Maybe that will help in the humour department.
* Sue Hendler is a former member of the Whig-Standard's Community Editorial Board. She is contributing regular columns on her experiences while she travels her breast cancer journey.
http://www.kingstonwhigstandard.com/ArticleDisplay.aspx?e=1342637
So a decision had to be made. Do I try another hormone therapy such as an aromatase inhibitor, which tries to further eliminate the availability of estrogen to my cancer cells, or do I skip that and head directly to chemo therapy?
Given that my cancer hasn't responded that well to hormone therapy, an aromatase inhibitor is a possibility, but unlikely to be effective. And given that my cancer is chemo-naive (I wish I could go back to being chemo-naive), walloping it with a combination chemotherapy might halt the spread of cancer cells and actually reduce the tumour burden I now have.
I've always had mixed feelings about chemotherapy. For that matter, I 've a lways had mixed feelings about taking any sort of medication. But chemotherapy carries with it an especially large amount of baggage. I don't like the idea of beating down my immune system just when I need it most. I don't relish the injection of stuff that's so toxic, health-care providers have to protect themselves from being in contact with it. And I don't think too positively about the chance of experiencing intense side effects that could well make me weaker, not stronger, in the face of a terminal illness.
I've also read a lot of journal articles that suggest chemotherapy often doesn't significantly prolong the lives of those of us with metastatic breast cancer.
Researchers in Canada and Australia have come up with a decision aid for people facing these sorts of choices. It is in the form of a workbook in which information and questions are presented, and a decision-making structure is suggested. This structure is based on identifying positive factors, such as the possibility of living longer (and why this is important), an improvement of symptoms and a sense of empowerment in terms of doing something to actively fight the disease. One's responses to these factors can be weighed against what many of us see as the negative aspects of chemotherapy - such as uncomfortable and sometimes dangerous side effects, needing tests and having to go to the hospital frequently - and the fact that there is no guarantee the treatment will actually work.
While I haven't seen the actual workbook (it is still being evaluated in anticipation of its adoption by at least some oncologists), I have read a discussion about it in the journal Health Expectations. It helped me organize my thoughts, and it was useful to put myself in the larger context of other women with metastatic breast cancer facing this sort of decision.
Even given all this, though, it really doesn't feel like I have much of a choice. I could stop all treatments and let the disease run its course. I could try an endocrine therapy that is unlikely to work. I could pursue alternative treatments, such as following the raw diet that is all the rage in a lot of popular cancer literature or taking lots of supplements and "natural" remedies when none of these has been proven or supported in the medical literature. Or I could pursue the treatment that represents the current paradigm in cancer medicine. And that's what I've decided to do.
I never thought I would agree to chemotherapy that is unlikely to cure my disease. But now that I have, I'm pretty committed to this course of action. Those of us born under the Aries horoscope sign tend to look for, and thrive on, challenges. My favourite astrologer, Jonathan Cainer, says that us Rams have the "tendency to create a life full of difficulty, just so that ... [we] ... always have something to sort out" ( www.cainer.com). He goes on to say that "there's nothing ... [we] ... can't tackle if ... [we] ... try." I'm now at a time when these traits, long bemoaned by those around me, should come in handy.
It feels like a fortuitous coincidence that, on the night before this challenge was presented to me, Dr. Robert Buckman was featured on CBC Radio's Ideas series. He is an oncologist who also lectures, and he wrote the book Cancer is a Word, Not a Sentence. Laughter, he says, is the second-best medicine. What is the first-best medicine, in his view? Medicine.
I'll have to remember that during my chemotherapy sessions, and as I try to keep my sense of humour intact throughout the next few months of treatment. My friend Margaret's daughter Anna has already offered to draw green eyebrows on my face to replace the ones I'll be losing. Maybe that will help in the humour department.
* Sue Hendler is a former member of the Whig-Standard's Community Editorial Board. She is contributing regular columns on her experiences while she travels her breast cancer journey.
http://www.kingstonwhigstandard.com/ArticleDisplay.aspx?e=1342637
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