The Robin in My Backyard

Like many folks who have grown up in the Northeast, I have come to see robins as a first sign of spring, as they return from wintering over somewhere warmer and farther south.

This year, I have a robin in my yard that's never left! I like to make up stories about things, so the story I've made up about this robin ("my" robin) in my thinking is that it was lured to stick around this winter when the winter began so mild. I swear I remember seeing it catch worms in the yard up to mid-January, before the weather turned suddenly and deeply wintry. At first, I worried about what she was eating (Yes, in my mind, she's a "she;" see how I make up stories?), and then I noticed that the berries on the dogwood tree in the side yard were slowly disappearing. Next, she discovered the holly bush in the front yard, full of berries, and she would even sing her tuneless robin song from the front yard, as if she had discovered a great treasure. Now, I don't know of any remaining berries in my yard (although she might), but I see her almost every morning at my water garden.

So, here's a photo of my water garden in winter; no robin; she's too smart to stick around when we (or the yard cats) are outside. In order to allow exchange of oxygen/carbon dioxide for the fish in the water garden, I put in a floating water heater. It keeps the ice from freezing the entire surface of the water, and, in addition to keeping my fish (and any bullfrogs wintering over down in the leaves) alive, it provides fresh liquid water for the birds, and cats, other wildlife, and for my robin. And even for a stray bluebird (formally known as an Eastern bluebird).

A few weeks ago, I saw a bluebird at the water garden, and wondered what it was doing this far north when it's so cold. I don't see bluebirds in my yard in the summer, so I was especially surprised to see her there. My friend Richard, who has bluebird houses and loves them, too, showed me a picture in a bird book of about 10 bluebirds tightly packed in a bluebird house in the winter. The book also said that bluebirds stop eating insects in winter and switch to berries. So then I added to "my story" about "my robin," and figured that, like bluebirds, she has shifted from her usual diet of earthworms to berries.

Okay, I know this has nothing to do with my illness, or my current physical state. So how do I feel today? Pretty good, tolerating the chemo well, eating well. But I'm not going out much with the cold air and my recent infusion of oxaliplatin, so I look out the windows a lot and dream of spring and things growing and turning green again. Even though this robin has stayed for winter, and so is not the typical harbinger of spring, she makes me smile and makes my heart happy. I admire her fortitude, her ability to survive and even thrive in this alien weather. I guess her life-fullness gives me hope, makes me happy. So, I share with you her story.

Credit to Patty for going out on this cold day to take this picture. Thanks, Patty!

Later note: I woke up thinking this morning that not everyone who might read this knows what these birds look and sound like, so I've created links to some websites with photos and bird songs, and some links to water garden pictures - in full summer mode, of course!

Simultaneous Truth

The title for this post comes from my Spring Hill friend, Thom Herman. He may not have coined the phrase, but he was the first one I heard use it. By "simultaneous truth," he meant that two things that appear to be opposite can both be true. I'm in that place with my diagnosis of gallbladder cancer, I have realized.

The first place is understanding the gravity of my diagnosis of gallbladder cancer, and that the prognosis is not good, and that I've already passed more than one of the potential survival deadlines for the diagnosis. I don't deny that it's serious, and I am doing my best to live fully in the awareness of the diagnosis and its significance for my life. I am doing my very best not to live in denial.

Simultaneously, the second place where I stand with my body, my feelings about my body, and my very serious diagnosis, is that I still feel like a healthy person, intrinsically. Yes, I have cancer, and sometime my body, my gallbladder cells, took a turn for the out of control. But, I still feel strong physically, able to live my daily life and do what needs to be done (at least when I don't run out of steam!). I think this is kind of strange, myself, so I'm not sure how it will seem to those of you reading this, but I was thinking about it today on the long drive up to and back from the hospital and my doctor appointments. (Yes, it was a wet, snowy, slushy, rainy, sleety drive, but we made it up and back safely. And Alice, I trust that you and Lexie did as well!) Part of the sense of my innate health was confirmed today by the fact that my blood work came back good again, with all features in the normal range. (This doesn't include the tumor markers, which will be in in a few days, but it's the "CBC" count.) So, my body has held up well under the chemotherapy. Let's hope those cancer cells have been knocked for a loop!

This also impacts the way I respond when someone else refers to my serious illness, my serious diagnosis. Some part of me is surprised to hear that, and then I remember that I do have a serious diagnosis!

Simultaneous truth. Yes, I have cancer, and yes, my natural strong constitution is holding up well under the assault. I seem to have adjusted to the bypass done around my bile duct last May, to the stent between my kidney and bladder, and now my blood has held up under the chemo. My life goes on.

So, with my good blood work, I'll be going in for an infusion of Oxaliplatin on Friday, and will begin another two week round of Xeloda. Then, in a little more than two weeks, on March 5, I'll go in for a CT scan and we'll see if the stent is properly draining my kidney, and if the tumor has stopped growing or even shrunk. One potentially positive note: We told the oncology nurse that sometimes the "spot" in my side aches in the morning if I've slept on that side, and she said maybe that's because the tumor is breaking down. That would be great news!

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?

Musings and Body Sensations

It's been a while since I posted on the blog, and I'm acutely aware of that. Some of it is that my real, full-time, paying job has been demanding more attention, and the full-time, non-paying job of cancer has slipped into second place. For now, at least. The other part is that I was out of town last week for a professional conference, in New Orleans, seeing colleagues I generally see only once a year and exploring the city, post-Katrina. The conference was good, New Orleans was both sad and hopeful (bittersweet, like cancer?), and seeing my long-distance friends and eating great food was wonderful.

My body has had a few sensations that have taken my attention. Last week, my abdomen was sore as it hasn't been since the summer. I puzzled and worried about it for a few days, and then remembered that I had carried a kayak for a few hundred yards at the beginning of the week. The soreness went away, and I realized that it was probably more weight than I should have carried, even 4 1/2 months post surgery.

Then there was the firm spot in my abdomen, toward the end of my surgical scar. I felt that almost two weeks ago for the very first time, and puzzled and worried about it, but knew I wouldn't do anything right away, as I was going to the conference. So I prodded and pushed and worried when I remembered it, and a week later, I described it to the nurse case manager from my HMO in a phone call. Since I'm seeing my primary care doctor this coming Monday, I told her that I would have my doctor check it out. Instead, she encouraged me to call my surgeon about it. She sounded worried for me, and I had wanted to talk to the surgeon anyway, so I called and got an appointment the next day.

The surgeon had a great explanation for it. He is 99% sure that it's a knot of thread, used to stitch up the fascia (under the skin). They started at the center point on my incision and stitched toward my side, and when they get to the end, they made a big knot. Although the thread will dissolve eventually, he said it's not unusual to feel it (or to see it during subsequent surgery) within a year of the surgery itself. And, if he's wrong and it's a little spot of cancer growing, it's in the fat tissue and they wouldn't do anything until they have a better sense about what's happening. So, he'll check out my next CT scan to see what it looks like.

We also talked about the possibility of removing my cancerous bile duct (called a Whipple procedure) if I continue to feel good and the cancer hasn't spread and I am one year or so post surgery. I almost hate to admit my hopefulness for this, because the future is as uncertain as ever, and I just keep working to take my life one day at a time. So, I go through my life as well as I can, and try not to project into the future too much. Still, when I got the clean scan in September, Patty said "Let's use this time to talk about a cure, a real cure!" I knew I wanted to talk about the possibility of surgery with the doctor who did the surgery last May.

My next CT is scheduled for Nov. 17, with the new oncologist on the job. I hate changing physicians under any circumstances, and now I have to get used to someone new!

So, that's it. Next week marks 5 months post diagnosis, and I continue to feel good. The quiet around my disease is welcome, yet strange, and feels like part of this shift from acute to chronic. I've had these little worries over the past two weeks, and I'm fine and I'm working and I'm enjoying my family and my life.

"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.

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.

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.