Before I share my thoughts on this topic, I want to reassure you that I'm not feeling gloomy or sad today, and in fact, I've had a little "steroid energy buzz" that led me to sort through some clothes in the closet to give away. I'm about ready for a nap, so it's not an excessive buzz, but except for nausea and vomiting first thing this morning, I'm feeling good. But this post isn't about my physical state; I just wanted to provide that reassurance.
On the Christian calendar, Holy Week marks the last days of Jesus' life on earth, including Maundy Thursday (today) which commemorates the Last Supper, and Good Friday when we remember the crucifixion. Then, the joyous day of resurrection is celebrated on Easter. Easter is an upbeat holiday, both spiritually and secularly, and so many of us love to celebrate Easter, but may skip over the more serious days leading up to it. But these days of Holy Week are somber and call for inner reflection. Since I've been doing a lot of that over past months, it fits my state of mind to think about mortality during Holy Week.
From a book of daily readings by Madeline L'Engle that I treasure comes this poem, which I read on Monday of this week before meditation.
From St. Luke's Hospital (2)
If I can learn a little how to die,
To die while body, mind, and spirit still
Move in their triune dance of unity,
To die while living, dying I'll fulfill
The purpose of the finite in infinity.
If God will help me learn to die today,
Today in time I'll touch eternity,
And dying, thus will live within God's Way.
If I can free myself from self's iron bands,
Free from myself not by myself, but through
Christ's presence in this simple room, in hands
Outstretched in holy friendship, then, born new
In death, truth will outlive the deathly lie,
And in love's light I will be taught to die."
(from Madeline L'Engle, Glimpses of Grace, p. 80)
"To die while living, dying I'll fulfill / The purpose of the finite in infinity." What is the purpose of our short finite lives, spiritually and philosophically speaking? Our purpose along a stream of time that goes back farther than we can imagine and into the future over time we can't conceive of? We can so easily got caught in thinking that life is meant to be easy, to be happy, to be successful (however we define that). But what if life is about none of those things, really?
During Lent, about fifteen of us from church have been meeting in a book discussion group to talk about the book "Learning to Fall: The Blessings of an Imperfect Life," which I've linked to almost from the beginning of my blog. In our discussions, I've talked with the group about my experience since the diagnosis of gallbladder cancer of taking on my mortality, and wondering about the purpose of life. That has included wondering whether or not we humans may be just plain wrong about why we are here. It's a heavy notion, it's difficult to articulate. In his book, Simmons comments on this idea, in a wonderful chapter entitled "Mud Season:"
"Before my illness I, like everyone, had always spent much my time in the mud, only I didn't know to value it. Mud seemed only to block my way. I had spent my life in pursuit of knowledge and happiness, only to find out that both were overrated. For what is knowledge without faith, and what is happiness without sorrow? The path to resurrection lies through the mud because only through pain and sorrow do we grasp the necessary truth offered in the Ninetieth Psalm" [which he quotes from, but I won't; it's about our mortality].
On a much lighter note, the question makes me think of the greeting card sold in alternative stores that says "What IF the hokey pokey is what it's all about?"
I have no answers these questions, or solutions to my ponderings. I do think that life is much more complex and mysterious than many/most of us think, and certainly than I have thought most of my life. We so easily look in all of the wrong places for what will be most deeply fulfilling, and then feel surprised when we are still unsatisfied. In the last 10+ months, I have made quite a few changes to my life, in response to my diagnosis, my energy, and my shifted sense of priorities. I still miss some of the things I used to find quite satisfying, and I'm also finding a new sense of peace with this slower pace, with more time for contemplation, and for the opportunity to connect with others that my disease, and this blog, have provided.
Holy Week offers us the chance to think about our mortality, and how we live our lives. Whether or not you identify as a Christian, the fact that this one man chose to give his life for others, and then, in his resurrection, founded a whole new religious faith based on love of neighbor and God, is a powerful teaching. In the stories of his last days, we hear the human Jesus struggling with his destiny. Since my diagnosis, I have resonated many times with these words of Jesus, spoken in Gethsemane on the night before he died, "My Father, if is possible, may this cup be taken from me, yet not as I will, but as you will." So many times in these months I have wished not to be sick, not to have gallbladder cancer, not to have a terminal diagnosis. Slowly, I have come, if not to fully accept this diagnosis, at least to accept that this is the hand dealt now, and my choice is how I deal with it.
May the deep lessons of Holy Week touch you this year as they have me, and may you find, emerging from the mud of this somber week, that Easter is especially joyous.
Showing posts with label mortality. Show all posts
Showing posts with label mortality. Show all posts
Thursday, April 05, 2007
Tuesday, March 27, 2007
Ten Months and Still Here! The Winter Tumor.
This past Saturday, March 24, marked ten months since the major surgery that revealed that I have gallbladder cancer. The diagnosis sounded like a death sentence . . . rare, incurable cancer . . . many folks live only two to six months post diagnosis . . . we don't know how your disease will progress . . . stage IV cancer, with "distant" metastasis . . . if you take this trip to the southwest you need to watch out for a recurrence of jaundice, for other evidence of spread of the disease and seek treatment immediately . . . yes, it would be a good idea to know where the closest hospital is as you travel . . .
Those were some of the conversations we had with my medical providers. Ultimately, they didn't tell us not to take the trip, and they didn't give us any compelling reasons why we should stay home. I couldn't begin chemo for at least a month following the surgery, so we were only potentially delaying beginning treatment by two weeks. Then, surprise! We returned from our trip, I had no signs of jaundice, was clearly recovering well from the surgery, and the CT scan showed no progression of disease. That was the beginning of what proved to be 8 months of being asymptomatic (except for that pesky spot in my abdomen that was removed surgically in December, and was an implant, grown from cells accidentally deposited as they removed my cancerous gallbladder).
And now I know, and know of, folks who are 18 month post diagnosis and doing well, and folks with even more time who continue to fight the cholangiocarcinoma, and to experience a good quality of life. As spring begins to stir here in Massachusetts, I find my desire to fight the disease is strengthened. Why not order those bulbs to plant in the yard in May and watch them bloom over the summer? Why not expect to be here in a year to watch yet another spring arrive? (Well, writing "expect" reminds me of the warning to have "abundant expectancy, but not expectations;" see my post of December 11) But why not have hope and imagination and faith in my body's ongoing ability to fight this disease?
Last summer when I was first diagnosed, my friend Bev was the one who said to me, tearfully, "You need another spring, you deserve another spring." This can't be happening, and the disease can't take you that fast, was the heart of her point. She and I both love to garden, and sharing our growing stories and cuttings and plants has been a special joy in our relationship. I knew what she meant. With the coming of this spring, I feel a renewal of that determination.
With the arrival of spring, I also feel I'm beginning to emerge from the "shell shock" of the sudden appearance of this dangerous tumor in my abdomen, visible in January's scan. I thought after 8 months that anything growing would be a little slower to be dangerous, yet this came on like gangbusters, threatening the functioning of vital organs, and, honestly, scaring me to death. It was a winter tumor, and it should vanish now that spring is here!
Something Leroy wrote in his blog before we left on vacation has really stuck with me, and seemed to articulate some of the changes I've experienced internally since the initial panic and anxiety about my life threatening diagnosis. On March 8, this is what Leroy had to say:
"I still stand by what I said earlier. I'm not ready to die. At the same time, when my cancer came at me again, I did finally come to peace with the process. After all, I feel that I have lived a decent life. But there is a big difference between coming to grips with your own death and giving up on life. I don't think any of us ever give up. Even when the time may come that we choose to end treatment, that's not giving up. That's making a choice."
"A big difference between coming to grips with your own death and giving up on life." Those were words I needed to hear last summer when I was dealing with the intensity of my diagnosis. So, I'm grateful to Leroy for saying the words I still needed to hear, for putting words on my experience. I feel that these last months have been about coming to grips with my own death, recognizing that it's likely to come sooner than I ever expected, while still not giving up on life. There's so much I want to do, and see, and write, and be, before my life comes to an end.
Let's hope that this winter tumor shrinks in the face of the chemo, and gives me even more time than I could have imagined last summer.
Those were some of the conversations we had with my medical providers. Ultimately, they didn't tell us not to take the trip, and they didn't give us any compelling reasons why we should stay home. I couldn't begin chemo for at least a month following the surgery, so we were only potentially delaying beginning treatment by two weeks. Then, surprise! We returned from our trip, I had no signs of jaundice, was clearly recovering well from the surgery, and the CT scan showed no progression of disease. That was the beginning of what proved to be 8 months of being asymptomatic (except for that pesky spot in my abdomen that was removed surgically in December, and was an implant, grown from cells accidentally deposited as they removed my cancerous gallbladder).
And now I know, and know of, folks who are 18 month post diagnosis and doing well, and folks with even more time who continue to fight the cholangiocarcinoma, and to experience a good quality of life. As spring begins to stir here in Massachusetts, I find my desire to fight the disease is strengthened. Why not order those bulbs to plant in the yard in May and watch them bloom over the summer? Why not expect to be here in a year to watch yet another spring arrive? (Well, writing "expect" reminds me of the warning to have "abundant expectancy, but not expectations;" see my post of December 11) But why not have hope and imagination and faith in my body's ongoing ability to fight this disease?
Last summer when I was first diagnosed, my friend Bev was the one who said to me, tearfully, "You need another spring, you deserve another spring." This can't be happening, and the disease can't take you that fast, was the heart of her point. She and I both love to garden, and sharing our growing stories and cuttings and plants has been a special joy in our relationship. I knew what she meant. With the coming of this spring, I feel a renewal of that determination.
With the arrival of spring, I also feel I'm beginning to emerge from the "shell shock" of the sudden appearance of this dangerous tumor in my abdomen, visible in January's scan. I thought after 8 months that anything growing would be a little slower to be dangerous, yet this came on like gangbusters, threatening the functioning of vital organs, and, honestly, scaring me to death. It was a winter tumor, and it should vanish now that spring is here!
Something Leroy wrote in his blog before we left on vacation has really stuck with me, and seemed to articulate some of the changes I've experienced internally since the initial panic and anxiety about my life threatening diagnosis. On March 8, this is what Leroy had to say:
"I still stand by what I said earlier. I'm not ready to die. At the same time, when my cancer came at me again, I did finally come to peace with the process. After all, I feel that I have lived a decent life. But there is a big difference between coming to grips with your own death and giving up on life. I don't think any of us ever give up. Even when the time may come that we choose to end treatment, that's not giving up. That's making a choice."
"A big difference between coming to grips with your own death and giving up on life." Those were words I needed to hear last summer when I was dealing with the intensity of my diagnosis. So, I'm grateful to Leroy for saying the words I still needed to hear, for putting words on my experience. I feel that these last months have been about coming to grips with my own death, recognizing that it's likely to come sooner than I ever expected, while still not giving up on life. There's so much I want to do, and see, and write, and be, before my life comes to an end.
Let's hope that this winter tumor shrinks in the face of the chemo, and gives me even more time than I could have imagined last summer.
Monday, February 26, 2007
"Make No Comparisons" - Brugh Joy's Spiritual Lesson #1

Since my post of Feb. 20, I've been thinking about how I couldn't stop comparing myself to others, knowing that other people on chemo have a hard time, or an even harder time than I am. It brought to mind some spiritual lessons I keep learning over and over again. I know it's human to compare our experience to others, but it's not always that helpful.
When I was taking workshops with W. Brugh Joy, I read his book Joy's Way: A Map for the Transformational Journey. An Introduction to the Potentials for Healing with Body Energies. In the third chapter of the book, Brugh describes a cosmic experience of a woman who came to talk with him about her challenges in life. A few months earlier, she had been walking along a beach, saw an iridescent light, and heard a booming voice deliver three injunctions. She thought she was going mad. The voice said, slowly and repetitively, "'There are three injunctions for you. Pay attention to them. Make no comparisons; make no comparisons. Make no judgments; make no judgments. Delete your need to understand; delete your need to understand.'" (p. 59)
Today I want to share some of my thoughts about the first injunction: Make no comparisons. Like many spiritual lessons, I feel that I have been learning and relearning this lesson for decades. My comparing myself to others on chemotherapy is an example. I feel that the reality is that my task, my spiritual work right now, is to be present to my experience and to see what it has to teach me. I can empathize with the experience of others, but making comparisons is not useful (human, but not useful).
In his book, Brugh makes a few useful points about this injunction. He says "The tendency to live in ideas about reality isolates the mind from the true reality of the physical level . . . self is - the self is true, without question - but ideas about self may be true or false, . . . If the individual insists on holding on to ideas rather than harmonizing with what is, pain must follow." In these words, I hear him saying that believing things about ourselves, in comparison to others, isolates us from the truth about our self. I hope I'm not making this too ponderous, because it's a lesson that has really served me.
For some of us, perhaps many of us, this comparison comes in looking at our physical attributes and judging them as wanting in comparison to friends, family, societal ideals, etc. Brugh gives an example of this for himself in his book by talking about his dissatisfaction with his physical appearance for years. I was doing this in a small way when I felt overdressed for the weather on Feb. 20, and didn't like what I saw was the way others were seeing me. For much of my life, I have judged my physical body by cultural standards and found it wanting. Now that the calendar year says I will turn 60 if I live until my June birthday, I can get caught less in that, but it's still there. Last fall, I saw an old friend whom I hadn't seen in perhaps 20 years, and a mutual friend commented back to me that she thought I looked old. Well, we are the same age, but I have let my hair turn gray. I haven't completely accepted my aging body, but I do recognize that making comparisons with younger bodies accomplishes nothing. Aging is something we baby boomers don't always do gracefully, I fear.
On a spiritual level, making comparisons can mean seeing others as more spiritually evolved than we are, and feeling hopeless to achieve what someone else has achieved. For me, with my gallbladder cancer diagnosis, there is this desire not to be facing the challenges I have. I want to live a longer life, I want to see my kids grow up, I even want a less serious cancer if I have to have cancer. But none of that wishing changes the reality. Can I give up those comparisons to the life I wish I had to, to the life others have, to allow myself to benefit from the life I do have?
Toward the end of the section on this injunction, Brugh adds "It is especially important that one not interpret the injunction against making comparisons as an exhortation to live in a state of complacency, where everything that the outer mind sees is rationalized as being perfect or right, without need for change. Complacency is the way of the ignorant." I've never thought of this spiritual lesson as encouragement to accept everything the way it is, without question or concern, but I can see how it could be read that way.
Make no comparisons. Be true to oneself, and be willing to look under the rocks of consciousness to see what is hidden from awareness. Under those rocks lie the possibility of transformation, of true change that allows us to fully unfold into the person, the spiritual person, we were meant to be, we were created to be.
On another day, I'll add Brugh's thoughts - and my own - about the other two injunctions.
Today is a pretty good day for me in Chemo World, as I grade some papers, make up a midterm, and try to stay off my feet with their "hot spots." Three and a half days remaining in this cycle of chemo . . .
Labels:
gallbladder cancer,
mortality,
spiritual,
W. Brugh Joy
Monday, January 15, 2007
"Of Dragons and Garden Peas: A Cancer Patient Talks to Doctors"

Last week, I received in the mail a copy of an essay written by Alice Stewart Trillin, entitled "Of Dragons and Garden Peas: A Cancer Patient Talks to Doctors." It was sent to me by my friend Maria U, who saw a reference to it, knew that I would resonate with it, and had to travel to a real (not virtual) library to get me a copy. She was so right that I would resonate with it, and I thank her, and I want to share some of this essay with those of you who read my blog.Published in vol. 304, No. 12 of The New England Journal of Medicine, on March 19, 1981, "Of Dragons and Garden Peas: A Cancer Patient Talks to Doctors" is based on a talk given to medical students at Cornell and Albert Einstein medical schools by Alice Trillin, who was an English teacher, a writer, and an educational consultant. This is a powerful, wonderful essay that speaks to the issues faced by so many of us today who are struggling with a cancer diagnosis. Unfortunately, it appears that you can't read the essay online, but have to order a copy from the NE Journal. There is a summary on the website known as the Literature, Arts & Medicine Database, and you can see how to order a copy, or have one-time access to the article for a fee through the NE Journal of Medicine. Or, you can do what Maria U did, and visit a real library that includes medical journals to read the essay.
Although she wrote this 26 years ago, Trillin's issues, questions and analysis have very much applied to my more recent diagnosis and experience. Unlike me, she did not feel changed by her diagnosis, but rather was struck by the banality of the experience of having a cancer diagnosis and treatment. She does a wonderful job of articulating the issue of mortality, and how our human, collective and individual fear of dying makes us reluctant to engage this conversation with those diagnosed with cancer. (This accurately reflects my experience, especially last summer, as I wrote in my January 13 post.)
Trillin writes, "We are all afraid of dying. ... Our fear of death makes it essential to maintain a distance between ourselves and anyone who is threatened by death. Denying our connection to the precariousness of others' lives is a way of pretending that we are immortal." In those lines, she expresses so clearly what I felt soon after my diagnosis, and have continued to feel. I am so grateful for her ability to articulate clearly this human condition. She continues "We need this deception - it is one of the ways we stay sane - but we also need to be prepared for the times when it doesn't work. . . . for me . . . it is particularly important to face the fact of death squarely, to talk about it with one another." She continues that "[c]ancer connects us to one another because having cancer is an embodiment of the existential paradox that we all experience: we feel that we are immortal, yet we know that we will die."
She goes on to consider the doctor-patient relationship, and the ways in which we are talismans for each other. Talismans, she points out, give us control over the things we are afraid of. First, for patients, doctors and medicine in general are talismans, staging a drama "in which we pretend that doctors have the power to keep us well." Of course! Isn't this the reason that for generations, patients have turned over decision making and questions to doctors, to decide how much to tell us, when and how? This has changed for many of us, certainly since Trillin wrote this article, and yet many of us as patients want to maintain the illusion that doctors, nurses, all those involved in our treatment, know best and will save us. I didn't know until I was diagnosed last May that I didn't want to turn over that power, but rather wanted to be a co-partner in the process, and be given the information and tools that were available to help me understand what was happening.
Patients are also talismans for doctors, Trillin maintains. "Doctors defy death by keeping people alive. To a patient, it becomes immediately clear that the best way to please a doctor is to be healthy. If you can't manage that, the next best thing is to be well-behaved." This was an aspect of the relationship I hadn't considered, although I can imagine how hard it can be for doctors, nurses, and other medical personnel to work in an area of medicine where patients frequently die while under their care.
Another talisman Trillin identifies is that of the will. That we wish to will ourselves well, to list all of the things tying us to life, to let them and our will be enough to keep us alive. She goes on to point out that part of this is believing that illness and death can somehow be avoided by having the right attitude. Trillin also observes that a good friend who died from cancer a few years after her own diagnosis had absolutely the strongest will to live of anyone she had known, and so stands for her as an example of the failure of this talisman. I absolutely value the importance of a positive attitude, and bringing one's full will to fighting illness and fighting for life. But there is a danger in others cheering on those of us with cancer or other life threatening illnesses that if we keep up a good attitude, we will survive. Unfortunately, it's not that simple.
About the garden peas in the title, she observes that sometimes the details of our daily lives, the moments of living, of valuing the planting, the nurturing of treasured garden peas, also becomes a talisman. Being well enough to value the moment is a gift after being too sick to attend to the details of daily life, but even this talisman has its limits. Because I love to garden, and watch spring bulbs, early summer flowers, and especially my raspberries, bloom and (for the raspberries) then fruit, this image really worked for me. Right now in my winter garden, my Christmas Rose is sending up nodding blooms. I try to look at it each day, and love its white winter blossom when all else is dormant.
About these talismans, she comments that of course their "charms" don't always work. However, she also is not suggesting that these talismans should be abandoned, merely that their limits should be recognized. In a later article about her cancer experience, she defines the dragon as that which sleeps inside everyone who has ever had cancer. It is sleeping, she implies, and we do not want it to awaken. "We will never kill the dragon," she writes in conclusion here. "But each morning we confront him. Then we give our children breakfast, perhaps put a bit more mulch on the peas, and hope that we can convince the dragon to stay away for a while longer."
I knew before I read this essay that Alice Trillin had died. In September, 2001, she died of cardiac arrest; her heart problems came from the radiation she received 25 years earlier for her lung cancer. Her husband, Calvin Trillin, wrote that one could say she died of the treatment rather than the disease, but that there is no question she would have been grateful for those additional 25 years.
Saturday, January 13, 2007
When I Thought I Would Die Quickly, I . . .
Last May, when I was diagnosed with gallbladder cancer, I was told that most people with this diagnosis lived two to six months following diagnosis. I assumed that the doctors knew what they were talking about, and that I needed to get my affairs in order, and began to seriously take on my mortality. I also had a strong intuitive hit (that I've written about before) that I was not to assume that I would survive this cancer, that I was meant to fully engage my mortality. Then, the weeks passed, I regained my strength, recovered from my surgery, and felt good. "Confounding my doctors," I would say to folks who inquired about my apparent health in the weeks and months following my diagnosis.
Last month, I passed seven months following diagnosis, and found myself remembering some of things I felt about the mundane details of life in the weeks following my diagnosis.
When I thought I would die quickly, I
* resented paying my bills. Who cared that I had had my teeth cleaned in the month before my diagnosis, and would die with clean teeth? Or not? (I've had my teeth cleaned twice again since then, I'm glad to say.) And I felt this despite knowing that if I died with debts, my "estate" (whatever money or property I had at death) would, in fact, pay those debts. It was just a feeling, but I just didn't want to pay those bills for services I incurrred when I thought I'd be living for many decades. And, I should add, I did pay those bills, I just resented them.
* wanted to tell everyone that I had terminal cancer. I was still dealing with my diagnosis, and I wanted everyone to know and feel sorry for me. Except that this feeling was only a part of me, and I mostly didn't just blurt it out to everyone. The feeling seemed to come from some place that believed if I told enough people, and they believed me, I could believe it.
* kept saying that if the doctors hadn't surgically removed my gallbladder and other tissue so that the pathologist could test it, I wouldn't believe the diagnosis. Now, I know that denial is a frequent normal response of humans to information we don't like and don't want to believe, but I still remember how strong this feeling was. How could I be so sick if I felt so good? And I thought a lot about the surgery, because I learned from Dr. M, the surgeon, that if they had known I had cancer, they wouldn't have operated, and would instead have begun chemo and put in stents to relieve the buildup of bile.
* wept frequently. Life felt very precious, and I didn't want to leave it. Still don't.
* wanted to talk about death and dying, and our fear of it. It's hard to get people to talk with you about dying, I discovered. In general, those most willing to, because of their training and temperaments, perhaps, were our friends in ministry or training for ministry. I was grateful for those friends, because they would listen to me talk about the pain of receiving a terminal diagnosis, and talk about how I was feeling, with the weight of the terminal diagnosis in my heart and my soul. And a few of my very best friends stepped into this listening space with amazing grace and sweetness. I was frustrated when others acted as if I had just received any other serious, but not life-threatening, diagnosis. I wanted to shake them. "Can't you see what's happening to me? I want to talk about it!"
* had hope for the future, despite taking on my mortality, but still didn't imagine creating this blog in August, teaching through the fall semester, and sitting in my most comfortable chair on this January evening feeling like myself. Mostly, anyway, like myself, just changed by these months of living with this life changing diagnosis.
Last month, I passed seven months following diagnosis, and found myself remembering some of things I felt about the mundane details of life in the weeks following my diagnosis.
When I thought I would die quickly, I
* resented paying my bills. Who cared that I had had my teeth cleaned in the month before my diagnosis, and would die with clean teeth? Or not? (I've had my teeth cleaned twice again since then, I'm glad to say.) And I felt this despite knowing that if I died with debts, my "estate" (whatever money or property I had at death) would, in fact, pay those debts. It was just a feeling, but I just didn't want to pay those bills for services I incurrred when I thought I'd be living for many decades. And, I should add, I did pay those bills, I just resented them.
* wanted to tell everyone that I had terminal cancer. I was still dealing with my diagnosis, and I wanted everyone to know and feel sorry for me. Except that this feeling was only a part of me, and I mostly didn't just blurt it out to everyone. The feeling seemed to come from some place that believed if I told enough people, and they believed me, I could believe it.
* kept saying that if the doctors hadn't surgically removed my gallbladder and other tissue so that the pathologist could test it, I wouldn't believe the diagnosis. Now, I know that denial is a frequent normal response of humans to information we don't like and don't want to believe, but I still remember how strong this feeling was. How could I be so sick if I felt so good? And I thought a lot about the surgery, because I learned from Dr. M, the surgeon, that if they had known I had cancer, they wouldn't have operated, and would instead have begun chemo and put in stents to relieve the buildup of bile.
* wept frequently. Life felt very precious, and I didn't want to leave it. Still don't.
* wanted to talk about death and dying, and our fear of it. It's hard to get people to talk with you about dying, I discovered. In general, those most willing to, because of their training and temperaments, perhaps, were our friends in ministry or training for ministry. I was grateful for those friends, because they would listen to me talk about the pain of receiving a terminal diagnosis, and talk about how I was feeling, with the weight of the terminal diagnosis in my heart and my soul. And a few of my very best friends stepped into this listening space with amazing grace and sweetness. I was frustrated when others acted as if I had just received any other serious, but not life-threatening, diagnosis. I wanted to shake them. "Can't you see what's happening to me? I want to talk about it!"
* had hope for the future, despite taking on my mortality, but still didn't imagine creating this blog in August, teaching through the fall semester, and sitting in my most comfortable chair on this January evening feeling like myself. Mostly, anyway, like myself, just changed by these months of living with this life changing diagnosis.
Friday, December 22, 2006
Today, I Don't Want to Know
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.
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.
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?
Monday, September 25, 2006
All in the Same Boat
I mentioned in my last post that cancer affects far more than the person diagnosed. Over the past four months (yesterday was the four month "anniversary" of my diagnosis), I have witnessed and heard about the impact on friends and family. I could see from the faces of friends who came to the hospital how worried they were about me, and I have felt supported and well loved by the reaching out in cards, letters, emails and phone calls of so many in my various communities of friends. Those who have been diagnosed with cancer, or had a close friend, family member or partner experience a cancer diagnosis and treatment have responded with a special empathy. Many of their responses are found in the "comment" section of this blog.
Sometimes, those who are friends but not otherwise or previously touched by a cancer diagnosis personally respond powerfully to the urgency of my diagnosis. One of those is a co-worker, colleague and friend, Julie Baker, who wrote movingly of her response to my diagnosis.
About our common mortality, Julie wrote: "When I think about life and death, I always think about how in reality, there's no secure or definite future for anyone. Any of us could drop dead at any moment for any reason, or for no reason at all. There are no promises or guarantees that we are going to wake up tomorrow, or next week or next year." Like me, Julie is a mother of a small child, her daughter. She shared with me how being a parent had brought her a powerful sense of her mortality. " . . . my greatest fear is that I will not be here for my daughter - selfishly, because I want to be here for every moment of her life, and unselfishly, because I always want her to have the enormous, unconditional love that I believe only I can give her."
About living in the present, Julie writes that "I have decided that even though intellectually, we all know that nothing is certain or guaranteed from one moment to the next, we suppress that thought because we have to in order to go about our day-to-day lives. Most of us would be immobilized - or think we would be - if we confronted the reality of the situation. But maybe that's exactly wrong. Maybe we should all acknowledge it, and not wait for an illness or an accident or a diagnosis to remind us. Because it's true for all of us, whether we've been brought to the consciousness of it (as you have) or not."
"Why am I telling you this? " Julie writes. "Because your blog got me thinking, for one thing. But also, because maybe I hope it will make you feel a little less separate or different. You're not. We really are all in the same boat. In one sense, bizarre as it sounds, you are ahead of the game - you have confronted the reality squarely (like it or not), and you can use that information to make better choices about how you live all the moments of your life. I try to do that, but I constantly fall victim to the crisis du jour, and suddenly it's a week later, or a month later, or a year later. I don't want to look back at some point and have to ask myself why I have wasted all this time. You know?"
Julie's thoughts reflect to me some of what I might have thought a year ago, before cancer. And I appreciate the empathy, the reaching out, the connecting her different experience with mine.
Also, with last week's good news and another two months of breathing space, I find myself losing some of my "edge" about my mortality. Maybe I'll beat this. Maybe I'll live not just one year or two, but twenty. Maybe my cancer took twenty years to get to the place that required surgery last May, and maybe additional surgery really can remove the rest. Since I've already confounded my doctor with my response in the last four months, why not go for more? But can I hope for more and still hold the lessons learned from these past months?
For many years, I attended annual workshops with W. Brugh Joy, whose perspective about life events is often radically different from the norm. He often said "The deep psyche loves contrast." My psyche has been blown away from the events of past months, contrasting powerfully with what preceded this time. Can I keep living in the moment and savoring each bit? Can I truly remember that we really all are in the same boat, living a life that could end at any moment, without notice? When we were traveling to the southwest this past June, to national parks full of ancient rocks (Zion National Park, Bryce, Capitol Reef, Grand Canyon, and others), I felt that I was in geologic time. A rock could fall and take my life at any time. I could live with that then. Now I just want to live.
Sometimes, those who are friends but not otherwise or previously touched by a cancer diagnosis personally respond powerfully to the urgency of my diagnosis. One of those is a co-worker, colleague and friend, Julie Baker, who wrote movingly of her response to my diagnosis.
About our common mortality, Julie wrote: "When I think about life and death, I always think about how in reality, there's no secure or definite future for anyone. Any of us could drop dead at any moment for any reason, or for no reason at all. There are no promises or guarantees that we are going to wake up tomorrow, or next week or next year." Like me, Julie is a mother of a small child, her daughter. She shared with me how being a parent had brought her a powerful sense of her mortality. " . . . my greatest fear is that I will not be here for my daughter - selfishly, because I want to be here for every moment of her life, and unselfishly, because I always want her to have the enormous, unconditional love that I believe only I can give her."
About living in the present, Julie writes that "I have decided that even though intellectually, we all know that nothing is certain or guaranteed from one moment to the next, we suppress that thought because we have to in order to go about our day-to-day lives. Most of us would be immobilized - or think we would be - if we confronted the reality of the situation. But maybe that's exactly wrong. Maybe we should all acknowledge it, and not wait for an illness or an accident or a diagnosis to remind us. Because it's true for all of us, whether we've been brought to the consciousness of it (as you have) or not."
"Why am I telling you this? " Julie writes. "Because your blog got me thinking, for one thing. But also, because maybe I hope it will make you feel a little less separate or different. You're not. We really are all in the same boat. In one sense, bizarre as it sounds, you are ahead of the game - you have confronted the reality squarely (like it or not), and you can use that information to make better choices about how you live all the moments of your life. I try to do that, but I constantly fall victim to the crisis du jour, and suddenly it's a week later, or a month later, or a year later. I don't want to look back at some point and have to ask myself why I have wasted all this time. You know?"
Julie's thoughts reflect to me some of what I might have thought a year ago, before cancer. And I appreciate the empathy, the reaching out, the connecting her different experience with mine.
Also, with last week's good news and another two months of breathing space, I find myself losing some of my "edge" about my mortality. Maybe I'll beat this. Maybe I'll live not just one year or two, but twenty. Maybe my cancer took twenty years to get to the place that required surgery last May, and maybe additional surgery really can remove the rest. Since I've already confounded my doctor with my response in the last four months, why not go for more? But can I hope for more and still hold the lessons learned from these past months?
For many years, I attended annual workshops with W. Brugh Joy, whose perspective about life events is often radically different from the norm. He often said "The deep psyche loves contrast." My psyche has been blown away from the events of past months, contrasting powerfully with what preceded this time. Can I keep living in the moment and savoring each bit? Can I truly remember that we really all are in the same boat, living a life that could end at any moment, without notice? When we were traveling to the southwest this past June, to national parks full of ancient rocks (Zion National Park, Bryce, Capitol Reef, Grand Canyon, and others), I felt that I was in geologic time. A rock could fall and take my life at any time. I could live with that then. Now I just want to live.
Labels:
friends,
gallbladder cancer,
mortality,
W. Brugh Joy
Subscribe to:
Posts (Atom)