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.
Wednesday, September 16, 2009
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.
Friday, September 11, 2009
Now Voyager
To change one's life: Start immediately. Do it flamboyantly. No exceptions. ~ William James~
If you woke up breathing, congratulations! You have another chance. ~ Andrea Boydston ~
John Lennon once said, "Life is what happens to you while you're making other plans."
Truer words were never spoken.
It certainly was true in his life. A gifted and immensely popular musician, poet and artist, Lennon had found his soul mate in Yoko Ono, and together they had a healthy, beautiful son. Life was good, and the future looked brighter than ever. Book and movie deals, new recording contracts, gallery exhibits - those were their plans.
Until life happened.
On a cold, drizzly evening in New York City, December 8, 1980, John Lennon was shot and killed outside his Central Park apartment by a crazed fan.
We're all familiar with names of other well-known people who seemed to have their whole lives ahead of them, whose futures held great promise but were cut tragically short. Princess Diana and John F. Kennedy, Jr. are two of the most obvious examples.
The actor Christopher Reeve was surely making other plans when he was thrown from his horse during a riding exhibition in 1995. Life happened in one terrible moment, and he went from being the man everyone knew as the movie hero Superman to a quadriplegic dependent on others for every breath he took. He died from the combined and long-term effects of his injuries nine years later.
Nearly three thousand Americans were making other plans when they went to work or boarded airplanes on September 11, 2001. Their lives ended that day, and the lives of countless thousands of others, their families and friends - who were also making other plans - were forever changed by the nightmare now known simply as "9/11."
All of these people and the tragedies that befell them made headlines around the world either because of the celebrity status of those involved or the sheer enormity of the event. But life happens to ordinary individuals making other plans every single day, quietly and with little or no warning, in doctors' offices and clinics and hospitals around the world. Someone says a single word - "cancer" or "terminal" or "coma" or "inoperable" or any one of thousands of terrifying possibilities - and someone else's life changes forever.
If you're reading this, it's probably because you are one of those for whom life has forever changed because of some circumstance beyond your or anyone else's control. There is some measure of comfort in reminding ourselves that no one gets off this planet without his share of such circumstances. Give yourself time to grieve, focus on slow, deep breathing to calm and center yourself, then begin to move forward again, this time using the new tools and techniques you have learned at such dear cost.
And now begin to really live. No prissy, half-hearted living like you were living before. That wasn't really living, and that you doesn't exist anymore. No putting off dreams until tomorrow. Carpe diem. Carpe diem. Carpe that diem now.
Go live your life. Become who you know you're supposed to be. No holding back this time.In the words of Walt Whitman, "Now voyager, sail thou forth to seek and find."
And don't you dare say it's too late. If you're reading this, it's not too late. It's only too late for the people who didn't wake up this morning.
Live out loud. Be outrageous. Love fiercely. Laugh and cry at the sheer beauty of it all. And thank whatever god you believe in that you have another chance to get it right.
Every day, you get another chance.
Dear God, thank You for allowing me to wake up breathing this morning and for one more chance to get it right. Today I will begin to become the person you created me to be.
Amen
Roger and Kathy Cawthon
The Cancer Crusade
email: cawthons@thecancercrusade.com
web: http://www.thecancercrusade.com
Roger and Kathy Cawthon
The Cancer Crusade
email: cawthons@thecancercrusade.com
web: http://www.thecancercrusade.com
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