Warning: This is not a warm and fuzzy holiday posting, but rather a grim and sad one. So, don't read on just now if you are not in the mood.
Today, I don't want to know that I have been diagnosed with terminal cancer. I began this blog last August by saying:
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?
My answer then, and in the days since I framed the question, has been "Yes. I would want to know, I'm glad I do know." As the months have unfolded and I have felt well, returned to work, not gotten quickly and intensely ill, continued to recover from the major surgery of last May, and had other experiences, the immediacy of my diagnosis has somewhat faded. And while all of this has happened, I haven't had a day when I thought that I wouldn't want to know. I've seen it all as an opportunity to live more fully, and to be in the moment, savoring the life I have.
Today, however, I wish I didn't know. Suddenly, with Christmas three days away, I just don't want to be thinking that this could be my last Christmas, and have that added weight to the holidays. I loved Christmas as a child, and there is much about it that I continue to love. But with the passing of years, it has come to carry a lot of emotional baggage. To that baggage, I really don't want to add an awareness of my mortality, thank you very much.
Two weekends ago, I baked cookies for two days with good friends who came to roll, and dust, and shape the cookies I like to make just for Christmas. And in baking, we talked, sometimes about heavy and serious things, sometimes about light and fun things. One conversation, with my friend Judy, who is a United Church of Christ minister like Patty, was about the difference between getting a terminal diagnosis (like gallbladder cancer) and getting a serious diagnosis (like a cancer that's more treatable and has a good success rate from treatment). I don't want to be comparing degrees of "badness" for respective diagnoses with anyone, but I can feel the difference of a diagnosis that one expects to recover from, and one where nothing short of a miracle would prolong one's life. (That's me, and I am definitely in the market for one of those miracles.) And perhaps I can most accurately say that I know I would feel different if diagnosed with a treatable illness. The terminal diagnosis makes me wonder if I will be here next Christmas, or, if I am alive, I'll be well enough to bake cookies again for a weekend.
I wish I didn't have cancer. I wish it weren't gallbladder cancer, with its poor prognosis. I wish I could get treated and expect to go on living my life. I wish I didn't know that the cancer is in my body, and that this could just be my last Christmas. I wish I could just enjoy the anticipation and laughter of my children as Christmas approaches, and not worry about next year. Today, I don't want to know.
Showing posts with label terminal. Show all posts
Showing posts with label terminal. Show all posts
Friday, December 22, 2006
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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