Lately, I've been thinking about the vulnerability of loving a person with cancer. Like many folks who are diagnosed with cancer, after my gallbladder cancer diagnosis I found that some of the folks in my life drew closer, and some pulled away. Those who drew closer have provided amazing emotional, physical, spiritual support for me. And those who have withdrawn are suddenly not in touch and not connected. I don't know whether any of my friends in the second group made a conscious decision to withdraw, or if it just happened somehow. And I don't know how many of my friends in the first group, those who have moved closer to me, have thought about the consequences of their closeness.
In the 1980s, two friends of mine were killed while vacationing in the Caribbean. Murdered on the beach, those of us left behind felt shock and horror at their sudden death. This may sound like an obvious observation, but their deaths brought me the realization that when we love someone, two things can happen. They can leave us, through death or dissolution of the relationship, or we can leave them, through our death or a decision to end the relationship. Those are the options, really. It was the first time I was able to articulate the true vulnerability of loving someone, whether it's a friend, an intimate partner or a family member.
In the past, I have been one who withdrew after a cancer diagnosis. My friend Willa was diagnosed with lung cancer almost three years ago, and soon after, we spent a wonderful afternoon eating and talking and sharing stories. She was determined to fight her cancer, and seemed convinced she would win the fight against the cancer. I left that wonderful day with a strong intuitive sense that she would not survive the cancer, and then I had to decide whether to be with her, loving her, but feeling strongly she would not survive, or whether it was better for me to withdraw. I did withdraw, except through cards and emails and phone calls. I didn't see her again before her death in May of 2005. Given that situation again, with my own experience, I would not withdraw, but I would need to decide how to talk with her about my own feelings about her illness. It's tricky.
As a person with cancer who would very much like to survive this illness, I also have a strong intuitive feeling that I am not meant to assume I will survive. I hope, very much, that this doesn't mean the gallbladder cancer will kill me, but the same intuitive sense that told me that Willa would not survive has told me to take this illness very seriously, not to assume that I'll survive. So I do my best not to be in denial, and to take this illness and diagnosis in full awareness of possible/probable consequences. I hope to be here for many more years. But I digress.
Thinking about the vulnerability of loving someone with cancer, I have been thinking about my friends, longterm and new. My longterm, long distance friend Bev has been consistent in her loving attention. When she heard about my diagnosis, Bev called me in the hospital with two things to say: "I love you. When can I come to see you?" Those were the perfect words for me to hear a day or two after surgery, still hospitalized and still reeling from the diagnosis. Later, when she came to visit and stay for a week, Bev sat with me in stunned companionship as we contemplated the diagnosis. "You need another spring, at least," she said, and we both cried. I haven't asked Bev if she's contemplated the intensity of continuing to be in relationship with me, knowing that I have a terminal diagnosis.
I've also been thinking about new friends. I talked with my new friend Sandy about this last week. We've had a developing friendship for less than two years, and we meditate together weekly. Sandy said that she has thought about the vulnerability of being in an ongoing relationship with me, and she doesn't plan to go anywhere. We talked about this and we cried. How much easier, I think sometimes, would it be for her to leave now, and not to wait, not to worry with me as I anticipate a scan, not to worry about where this disease will take me. I don't want to lose her friendship, but I think about this.
And I think about the vulnerability of my family, my family of choice and my family of origin. Because we are family, they may not feel they have a choice, although we all know that family members do sometimes leave when faced with disease, or financial hardship, or the lure of something more enticing around the corner. I think about Patty, struggling with me through the challenges of this disease, and of my children, who are surely too young to lose a parent.
Loving someone with cancer means being vulnerable to loss, to pain, to the struggles the disease can bring. If someone you loved had cancer, would you choose to stay in relationship? Would you move closer, or farther away, or maintain your current distance? Do you know? Could you bear the vulnerability?
Showing posts with label death. Show all posts
Showing posts with label death. Show all posts
Monday, November 13, 2006
Monday, October 23, 2006
Who Knew?
Five months ago tomorrow, I was diagnosed with gallbladder cancer, and I was told that typically, folks live two to six months following diagnosis. Who knew that five months later I would be working, feeling good, still recovering from surgery, but showing no signs (to date) of the cancer spreading? Who knew?
At the time, I took on my mortality as fully as we can while alive and feeling essentially healthy. That's why one of the first questions I asked when I began this blog was "If you had just six months or a year to live, would you want to know?" And if you would want to know, how would that knowledge impact your life, day to day?
Taking on my mortality, and what seemed to be impending death, I wondered if I'd be alive to see the "06 midterm election" results, now two weeks away. I wondered where in the house my hospice bed should go. I wondered how I could possibly explain to my children that this illness had come on so unexpectedly, and that I was about to leave them with so little notice, so little time to say good-bye, to hug and kiss and love enough for the future time to be missed. And, more mundanely, I thought about some of my favorite television shows, and wondered how the plot would evolve in the fall, and then in the winter, and spring. Less mundanely, I thought I would not be able to teach again, and I grieved the thought of not teaching the new freshman class I had been prepping for months (and that I took to see the "Body Worlds" exhibit I wrote about a few weeks ago).
I no longer take my life, my continuing life, for granted, and I realize that tomorrow the proverbial bus could strike me, and then I would have died within that six month window. I do not assume that the good news of no evidence of cancer will continue forever, or even as long as I want it to.
And, I am grateful for the experiences these last five months have brought; the opportunities to love deeply; to laugh uproariously; to meditate intentionally and converse with those life threatening cancer cells; to stand with my students and explore new territory, new information, new ideas; to allow others to love me well and to express their care and concern in words and deeds.
I feel sadness with the changing season, watching the dying, browning leaves spreading over the yard, tree branches baring for winter. And I also feel gratitude to be here to see the season change. It was early summer when I was diagnosed five months ago. I have lived a summer and most of a fall since then, and I am grateful. And I wish for many, many more seasons to change during the span of my life.
But, five months ago, who knew?
At the time, I took on my mortality as fully as we can while alive and feeling essentially healthy. That's why one of the first questions I asked when I began this blog was "If you had just six months or a year to live, would you want to know?" And if you would want to know, how would that knowledge impact your life, day to day?
Taking on my mortality, and what seemed to be impending death, I wondered if I'd be alive to see the "06 midterm election" results, now two weeks away. I wondered where in the house my hospice bed should go. I wondered how I could possibly explain to my children that this illness had come on so unexpectedly, and that I was about to leave them with so little notice, so little time to say good-bye, to hug and kiss and love enough for the future time to be missed. And, more mundanely, I thought about some of my favorite television shows, and wondered how the plot would evolve in the fall, and then in the winter, and spring. Less mundanely, I thought I would not be able to teach again, and I grieved the thought of not teaching the new freshman class I had been prepping for months (and that I took to see the "Body Worlds" exhibit I wrote about a few weeks ago).
I no longer take my life, my continuing life, for granted, and I realize that tomorrow the proverbial bus could strike me, and then I would have died within that six month window. I do not assume that the good news of no evidence of cancer will continue forever, or even as long as I want it to.
And, I am grateful for the experiences these last five months have brought; the opportunities to love deeply; to laugh uproariously; to meditate intentionally and converse with those life threatening cancer cells; to stand with my students and explore new territory, new information, new ideas; to allow others to love me well and to express their care and concern in words and deeds.
I feel sadness with the changing season, watching the dying, browning leaves spreading over the yard, tree branches baring for winter. And I also feel gratitude to be here to see the season change. It was early summer when I was diagnosed five months ago. I have lived a summer and most of a fall since then, and I am grateful. And I wish for many, many more seasons to change during the span of my life.
But, five months ago, who knew?
Tuesday, September 12, 2006
"Today is a good day to die"
Please don't panic! I'm not losing my will to live, or contemplating the end, I just had another epiphany today in what may feel like my ongoing litany of living in the moment.
For those of you who have responded to my blog, by posting a response online, or by emailing me, I value the way you are reflecting back to me what speaks to you in what I have to say. Whether or not you are struggling with or have struggled with a cancer diagnosis, or whether you are or have been a caregiver to someone with cancer, whether you are someone who has stumbled on my blog and found it has something to say to you, or whether you are a friend who loves me, I thank you for being part of this online conversation.
Today was a stunningly beautiful late summer day in Boston. The sky a perfect blue, with wispy white clouds providing contrast. The air was warm in the sun, cool in the shade, comfortable with short sleeves, and invigorating to walk in. And walking I was, around 2:00, from Beacon Hill to Back Bay in Boston, to a dental appointment. (Since I like my dentist and was just going to have a fallen-out filling replaced, I had no dread about the appointment, just a sense of purpose.) And, I am moved to say, it was just such a perfect weather and sky day on September 11, 2001 in Boston, spurring memories of that day. Still, moving my body, seeing the interplay of light and shadow on the ground from trees and leaves, I felt transported to a state of pure joy. It was a moment, a moment that reminded me of this line: "Today is a good day to die."
The first time I heard someone say it and mean it was during a two week canoe trip with 15 other adults on the north-flowing Harricanaw River in Canada, about fifteen years ago. We were more than halfway through our wilderness adventure of canoeing to James Bay, and one morning we awoke to a sandy river beach, a gorgeous blue sky, and a perfect temperature. One of my fellow travelers, Terri, said, "Today is a good day to die." I didn't initially know how to take his comment, but then I got it. We were challenging our bodies, experiencing terrain new to us, living in the moment. We were in the right place, at the right time, and our trip was beginning to flow like the river. If our lives had ended that day, we could have died happy, knowing we were living in the moment and doing something we loved.
As I thought about sharing my insight from this afternoon, I worried that some of you, my friends, might panic. I briefly considered the title of "This moment is a good moment to live, not die," because it was a feeling of the moment, but the title definitely lacks punch. When I left the dentist about 90 minutes after my "moment," the air was cooler, the sun not so bright, and though I hoped that the feeling of perfection would return, it didn't. Because I think that it's not really about "perfect days" [for dying, or for living], but rather about "perfect moments" for living, and for realizing that, in those moments, we can be transported beyond our ordinary selves. In that moment this aftenoon, I felt the rightness of the day and my place in it. For that moment, nothing else mattered. Even cancer.
For those of you who have responded to my blog, by posting a response online, or by emailing me, I value the way you are reflecting back to me what speaks to you in what I have to say. Whether or not you are struggling with or have struggled with a cancer diagnosis, or whether you are or have been a caregiver to someone with cancer, whether you are someone who has stumbled on my blog and found it has something to say to you, or whether you are a friend who loves me, I thank you for being part of this online conversation.
Today was a stunningly beautiful late summer day in Boston. The sky a perfect blue, with wispy white clouds providing contrast. The air was warm in the sun, cool in the shade, comfortable with short sleeves, and invigorating to walk in. And walking I was, around 2:00, from Beacon Hill to Back Bay in Boston, to a dental appointment. (Since I like my dentist and was just going to have a fallen-out filling replaced, I had no dread about the appointment, just a sense of purpose.) And, I am moved to say, it was just such a perfect weather and sky day on September 11, 2001 in Boston, spurring memories of that day. Still, moving my body, seeing the interplay of light and shadow on the ground from trees and leaves, I felt transported to a state of pure joy. It was a moment, a moment that reminded me of this line: "Today is a good day to die."
The first time I heard someone say it and mean it was during a two week canoe trip with 15 other adults on the north-flowing Harricanaw River in Canada, about fifteen years ago. We were more than halfway through our wilderness adventure of canoeing to James Bay, and one morning we awoke to a sandy river beach, a gorgeous blue sky, and a perfect temperature. One of my fellow travelers, Terri, said, "Today is a good day to die." I didn't initially know how to take his comment, but then I got it. We were challenging our bodies, experiencing terrain new to us, living in the moment. We were in the right place, at the right time, and our trip was beginning to flow like the river. If our lives had ended that day, we could have died happy, knowing we were living in the moment and doing something we loved.
As I thought about sharing my insight from this afternoon, I worried that some of you, my friends, might panic. I briefly considered the title of "This moment is a good moment to live, not die," because it was a feeling of the moment, but the title definitely lacks punch. When I left the dentist about 90 minutes after my "moment," the air was cooler, the sun not so bright, and though I hoped that the feeling of perfection would return, it didn't. Because I think that it's not really about "perfect days" [for dying, or for living], but rather about "perfect moments" for living, and for realizing that, in those moments, we can be transported beyond our ordinary selves. In that moment this aftenoon, I felt the rightness of the day and my place in it. For that moment, nothing else mattered. Even cancer.
Thursday, August 17, 2006
Living, Really Living, Despite a Terminal Diagnosis
In my third blog entry, I began to write about the challenge of living with a terminal diagnosis. Some of the responses to that entry focused on concern for dying, and the experience of dying. I appreciated the experiences shared there, and the responses also helped me see that I wasn't completely clear about my difficulty in living the question. While I do not want to die, I do not fear death, and I trust that modern medicine has the capacity to relieve most/all of the pain that may accompany the end stages of this cancer.
So, what I am most concerned about is the living, living with a terminal diagnosis. What I wish I had asked my friends who were dying and knew that they were was what they thought about as they anticipated death, and what they had learned about living in the process of dying. What were the ways they had found to talk with loved ones about their impending death? What were the ways they had found to live more fully knowing that the end was approaching? What wisdom came newly to them as death approached? What new ways of thinking about living came to them as they lived in the face of death?
With all of these questions in mind, I am thrilled to find a book or an essay written by someone who has engaged these questions, whose thinking has gotten big enough to encompass big questions, big enough because they see their end. I found such book in Learning to Fall: Blessings of an Imperfect Life by Philip Simmons. Diagnosed in 1992 with ALS (Lou Gehrig's disease), he survived longer than many, and had the opportunity to write the essays in this wonderful, engaging book. He writes about dying, and he writes about living, and he writes about the natural world and what he can teach us about both.
About death, Simmons writes that acceptance of death provides a freedom to live differently, living in the present moment, living without attachment to thing in the same way as before. This is one of the things I have learned in the two and a half months since my diagnosis: live in the moment, appreciate the moment, be here now. The idea is not a new one, not to me, not a new thought from him, yet my experience of appreciation of the present moment has changed in these last months.
Yes, more often than I would like, I fall down the deep well of despair that a cancer diagnosis can bring.
And I also have discovered a new joy in sitting quietly in awe at the beauty of the moment before me. The sparkle of the ocean as the sun begins its descent. The beauty in my daughter's eyes. The poignancy of a moment sharing vulnerability with a friend. The mischievous sparkle in my son's face. The smell of cinnamon on a doughnut. The cold sweetness of Cherry Garcia ice cream on a hot summer night.
So, in the face of the terminal diagnosis, I am committed to living as fully as I can.
So, what I am most concerned about is the living, living with a terminal diagnosis. What I wish I had asked my friends who were dying and knew that they were was what they thought about as they anticipated death, and what they had learned about living in the process of dying. What were the ways they had found to talk with loved ones about their impending death? What were the ways they had found to live more fully knowing that the end was approaching? What wisdom came newly to them as death approached? What new ways of thinking about living came to them as they lived in the face of death?
With all of these questions in mind, I am thrilled to find a book or an essay written by someone who has engaged these questions, whose thinking has gotten big enough to encompass big questions, big enough because they see their end. I found such book in Learning to Fall: Blessings of an Imperfect Life by Philip Simmons. Diagnosed in 1992 with ALS (Lou Gehrig's disease), he survived longer than many, and had the opportunity to write the essays in this wonderful, engaging book. He writes about dying, and he writes about living, and he writes about the natural world and what he can teach us about both.
About death, Simmons writes that acceptance of death provides a freedom to live differently, living in the present moment, living without attachment to thing in the same way as before. This is one of the things I have learned in the two and a half months since my diagnosis: live in the moment, appreciate the moment, be here now. The idea is not a new one, not to me, not a new thought from him, yet my experience of appreciation of the present moment has changed in these last months.
Yes, more often than I would like, I fall down the deep well of despair that a cancer diagnosis can bring.
And I also have discovered a new joy in sitting quietly in awe at the beauty of the moment before me. The sparkle of the ocean as the sun begins its descent. The beauty in my daughter's eyes. The poignancy of a moment sharing vulnerability with a friend. The mischievous sparkle in my son's face. The smell of cinnamon on a doughnut. The cold sweetness of Cherry Garcia ice cream on a hot summer night.
So, in the face of the terminal diagnosis, I am committed to living as fully as I can.
Friday, August 11, 2006
Living, Not Dying, with Cancer
When I first received the diagnosis of terminal cancer, I was puzzled about how to live. Somehow, "taking to my bed" (as some folks used to do) until the cancer "took me" didn't seem to be an option. But, I was recovering from surgery, my body was weak and my energy low, so I wondered whether or not I would ever feel "normal" again. Two months later, I feel good, my energy is amazingly strong, and I have moved on from the initial shock of the diagnosis. But still, I wonder, how do you live, knowing, really knowing, that your days are numbered?
As a spiritual person, this question has felt especially important. I attend a Christian church, and I am part of a Christian community, and I also read spiritual material from many traditions, so I have been reading a lot. What is life? What is the purpose of our lives? Are we born to this life in order to learn certain lessons? Do we die when those lessons are learned? (I think the answer to that questions is no, but the question was in my mind.) I mention in my first posting that I haven't had good conversations about dying with those I have known who knew that their death was approaching, and I regret that. Why don't those who are dying, or who have a terminal diagnosis and are anticipating death, talk about it more? What are we afraid of? Are we afraid of death? The process of dying? I am determined to break the silence, for me and my diagnosis, at least, but I feel that I am stepping into a land with no map, a land where I know others have been, but have left too few clues., and no map to help me navigate.
On a practical note, one site that I found that would have been very helpful to me in the first weeks after my terminal diagnosis is one part of the hospice website. The hospice site includes an article by a doctor dying of cancer who provides practical personal and planning suggestions. But, he is not really talking about the spiritual aspects, the soul aspects of a terminal diagnosis.
Another place that I have found much insight and support and laughter and tears is the NPR website called My Cancer, by Leroy Sievers. Leroy's stories of his struggle with cancer, and the many responses from those with cancer, and those who love them, and those who are moved by his story, have enriched me immensely. Reading his blog and the comments has become a high point of each day. In his July 10 blog, Leroy talked about his fears, everyone's fears, and asks if we are afraid of dying, but he doesn't really talk about the spiritual aspects of a terminal diagnosis, either.
I believe in reincarnation (not really a Christian belief, I'm afraid, but . . . ), so I do believe that my soul, the essence of who I am really, not just my personality, will continue after my death. But I like this life, my family, my friends, my work, and I don't really want this life to end. So, how can I face death while still living fully?
One thing I am doing is feeling my gratitude, right here, right now, at being alive. I wake up each morning, and I am so happy to still be here, to be feeling good, today, to feel love for others and love from others. This EE Cummings poem has really been speaking to me:
i thank you God for most this amazing
day:for the leaping greenly spirits of trees
and a blue true dream of sky;and for everything
which is natural which is infinite which is yes
(i who have died am alive again today,
and this is the sun's birthday;this is the birth
day of life and love and wings:and of the gay
great happening illimitably earth)
how should tasting touching hearing seeing
breathing any--lifted from the no
of all nothing--human merely being
doubt unimaginable You?
(now the ears of my ears awake and
now the eyes of my eyes are opened)
Each morning, I feel that I have died and I am alive again, and I am grateful.
As a spiritual person, this question has felt especially important. I attend a Christian church, and I am part of a Christian community, and I also read spiritual material from many traditions, so I have been reading a lot. What is life? What is the purpose of our lives? Are we born to this life in order to learn certain lessons? Do we die when those lessons are learned? (I think the answer to that questions is no, but the question was in my mind.) I mention in my first posting that I haven't had good conversations about dying with those I have known who knew that their death was approaching, and I regret that. Why don't those who are dying, or who have a terminal diagnosis and are anticipating death, talk about it more? What are we afraid of? Are we afraid of death? The process of dying? I am determined to break the silence, for me and my diagnosis, at least, but I feel that I am stepping into a land with no map, a land where I know others have been, but have left too few clues., and no map to help me navigate.
On a practical note, one site that I found that would have been very helpful to me in the first weeks after my terminal diagnosis is one part of the hospice website. The hospice site includes an article by a doctor dying of cancer who provides practical personal and planning suggestions. But, he is not really talking about the spiritual aspects, the soul aspects of a terminal diagnosis.
Another place that I have found much insight and support and laughter and tears is the NPR website called My Cancer, by Leroy Sievers. Leroy's stories of his struggle with cancer, and the many responses from those with cancer, and those who love them, and those who are moved by his story, have enriched me immensely. Reading his blog and the comments has become a high point of each day. In his July 10 blog, Leroy talked about his fears, everyone's fears, and asks if we are afraid of dying, but he doesn't really talk about the spiritual aspects of a terminal diagnosis, either.
I believe in reincarnation (not really a Christian belief, I'm afraid, but . . . ), so I do believe that my soul, the essence of who I am really, not just my personality, will continue after my death. But I like this life, my family, my friends, my work, and I don't really want this life to end. So, how can I face death while still living fully?
One thing I am doing is feeling my gratitude, right here, right now, at being alive. I wake up each morning, and I am so happy to still be here, to be feeling good, today, to feel love for others and love from others. This EE Cummings poem has really been speaking to me:
i thank you God for most this amazing
day:for the leaping greenly spirits of trees
and a blue true dream of sky;and for everything
which is natural which is infinite which is yes
(i who have died am alive again today,
and this is the sun's birthday;this is the birth
day of life and love and wings:and of the gay
great happening illimitably earth)
how should tasting touching hearing seeing
breathing any--lifted from the no
of all nothing--human merely being
doubt unimaginable You?
(now the ears of my ears awake and
now the eyes of my eyes are opened)
Each morning, I feel that I have died and I am alive again, and I am grateful.
Sunday, August 06, 2006
A Life Changing Diagnosis
Receiving a diagnosis of terminal cancer is a life changing event; it certainly was for me, two months ago. Since then, I have worked hard to gather information aboout gallbladder cancer, and because it is rare, the information has been difficult to come by. One purpose for me in writing this blog is to share information gained, including links to sites on the web which have been productive and helpful. A second purpose, quite different but related, is to share my thoughts on the spiritual journey of receiving a terminal diagnosis. Perhaps this cancer will not kill me, but the odds are not in my favor.
The cancer in my gallbladder was discovered when my bile duct blocked, the bilirubin began to build in my body, and the blockage could not be cleared endoscopically. Surgery removed my gallbladder, revealed cancer in my bile duct, and provided a bypass for my bile duct; subsequent pathology reports indicated that the origin of the cancer was my gallbladder. I have recovered well from the surgery, and so have not begun chemotherapy, but there is a clear medical consensus that only chemotherapy will slow the progression of the disease. So, I will begin chemo when tests indicate that the cancer has begun to spread.
If you had only six months or a year to live, would you want to know? What would you do with the information? Would it make a difference in how you lived your life? These are questions I have been asking for the past two months. In asking them, I have also noticed how little guidance there is for this process. Who have I known personally who was able to anticipate their death? I can think of only two individuals, and I never asked them whether or not they were living differently in their awareness of their mortality.
So, those are the themes in this blog. I look forward to a dialog with those I know, and those I don't about this strange, life changing journey.
The cancer in my gallbladder was discovered when my bile duct blocked, the bilirubin began to build in my body, and the blockage could not be cleared endoscopically. Surgery removed my gallbladder, revealed cancer in my bile duct, and provided a bypass for my bile duct; subsequent pathology reports indicated that the origin of the cancer was my gallbladder. I have recovered well from the surgery, and so have not begun chemotherapy, but there is a clear medical consensus that only chemotherapy will slow the progression of the disease. So, I will begin chemo when tests indicate that the cancer has begun to spread.
If you had only six months or a year to live, would you want to know? What would you do with the information? Would it make a difference in how you lived your life? These are questions I have been asking for the past two months. In asking them, I have also noticed how little guidance there is for this process. Who have I known personally who was able to anticipate their death? I can think of only two individuals, and I never asked them whether or not they were living differently in their awareness of their mortality.
So, those are the themes in this blog. I look forward to a dialog with those I know, and those I don't about this strange, life changing journey.
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