Thursday, August 31, 2006

First Encounters

For anyone reading this post, here's a warning: I'm not feeling cheerful tonight, and I am feeling that Cancer Sucks! (A good friend actually gave me a little bear with those words, and it sits by my favorite TV watching chair. Good to have when I'm in this kind of mood.) Now that I have that off my chest . . . I had thought my next blog would focus on the spiritual aspects of my diagnosis, but I'm not feeling "spiritual" tonight.

When I do just about anything for the first time after my cancer diagnosis, it can be stressful. This week I went back to work. I have been on break for the summer, and I had meetings this week, and next week I resume teaching. So, for the first time since my diagnosis, I returned to my office. It's actually full of boxes, because I'm moving to a new office over the weekend, and my graduate assistant packed my office, but I got to sit there and say good-bye. And I got to remember that when I was last there, I had funny itching and orange urine, so I left and went to see my doctor. From there, it was a quick trip to the ultrasound, then the ERCP, then 10 days of hospitalization, major surgery, and my diagnosis. More than three months ago, and it feels like an eternity. Today I walked familiar streets in Boston, and remembered that the last time I walked them, I didn't have cancer. Or rather, the cancer was in me, and I didn't know it. I wish I could return to that pre-cancer innocence.

As summer ends, I am seeing friends and work colleagues I haven't seen since spring, and I wonder whether or not they know about my diagnosis. Some folks know I was "sick," but don't know the details. "How much do I feel like sharing in the moment?" I have to ask myself. The news was so bleak in May that I wasn't sure I would still be alive to see Sept. 1, so I told a lot of folks about the diagnosis then. Now, some days, I feel that overwhelming one more person with the poor prognosis for this disease is more than I can stand. I can feel their energy sink as I talk, and then my energy sinks, and it feels as if there is nothing else to say. And it is exhausting.

Next week, I'll teach my first classes, talk with returning students, meet new students, see more folks I haven't seen since spring, and unpack the boxes of my office stuff in my new office space. And again, it will be exhausting, but then this particular set of "first encounters (since the cancer diagnosis)" will be over, and life can go on. And I'm grateful that, for the moment, life is going on.

And, if you are reading this and you are one of the friends or colleagues I saw yesterday, or today, or that I see next week, don't worry about talking to me, or asking me how I feel. It's my job to figure out how I want to respond to questions, and I always appreciate the concern and caring behind those questions. So, do ask, and know that Cancer Sucks!

Sunday, August 27, 2006

What Does it Mean When your Most Pampered Organ Develops Cancer?

So, here's the weird thing about my gallbladder cancer. Of all the organs in my body, except perhaps my skin, it's the one I've spent the last twenty years taking extra specially good care of. Before I describe my pampering, I wans to answer a question some of you may be asking (as one friend did after hearing of my diagnosis): Where is the gall bladder and what does it do? The National Institutes of Health website defines it this way: "The gallbladder is a pear-shaped organ that lies just under the liver in the upper abdomen. The gallbladder stores bile, a fluid made by the liver to digest fat. When food is being broken down in the stomach and intestines, bile is released from the gallbladder through a tube called the common bile duct, which connects the gallbladder and live to the first part of the small intestine." That's the medical explanation. How did I come to pamper my gall bladder?

Growing up, I heard about the gallbladder from an early age, because my mother had hers surgically removed when I was just a toddler. There were foods she didn't cook for us, mostly pork and other fatty foods, because her doctors had told her to avoid pork after her surgery. So, I had heard about gallbladders early on, even if I didn't understand what they did. In my thirties, I had my first "gallbladder attack" (my words, I didn't see a doctor then) when I was awakened in the middle of the night by pain going up my back. A heating pad and sitting up finally eased the pain so that I could go back to sleep. (I attributed the event to trying out a new Chinese restaurant in town, and I didn't return to that particular greasy spoon.) After, on the suggestion of friend, I began drinking one-half a lemon squeezed into warm water each morning. It made intuitive sense to me that it might break down grease in my liver or gall bladder, it tasted good to me, and it was cheaper than a glass of orange juice. I continued to drink the lemon water almost every morning until my cancer diagnosis last May.

How else did I pamper my gallbladder? I only ate peanuts or peanut butter in the morning or mid-day, never at night, and the same with fried foods, which I ate only occasionally anyway. Apple cider gave me indigestion, so I avoided it even though I like it. My doctor had told me that "cruciferous vegetables" (broccoli and cauliflower) or apples might give me trouble, but they didn't. I ate low fat meats, enzymes to help my food digest, lots of fresh fruits and vegetables, and avoided any food I thought would make my gallbladder flare up.

Only twice more, in the last year and a half, did I have painful indigestion. I thought I was taking really good care of my gallbladder, and helping to prevent stones. Gallbladder cancer was nothing I'd ever heard of.

Oh, and I should mention that my father had his gallbladder removed about twenty years ago, in his 60s. I've known for a while that in my family, gallbladders didn't do well, so I intensified my efforts to take care of mine.

I don't have an answer to the question that begins this blog, but I do know that it feels really, really strange to have the most pampered organ develop cancer. If I thought I was eating well before this diagnosis, and I developed cancer, then what do I eat now? If I thought that drinking the lemon water was being good to my gallbladder, then do I now think that I was too good, and perhaps would have had my stone-filled gallbladder removed a decade ago? I know from talking with others with cancer that it's natural to second guess our behavior before diagnosis and wonder if we could have done something different so that the cancer would not develop.

But, the purpose of my question is also asking whether or not there is anything I can do now to help keep the tumor from growing, the cancer from spreading. Should I eat organic food? Should I keep drinking lemon water, or stop? What would be a healthy diet? Does what I eat matter now? Reading some discussion boards, and responses to various blogs, I see that lots of people have opinions (tumors feed on sugars, cancer patients need to eat organic, everyone should try alternative therapies, see a nutritionist, etc.). I'm not sure whether or not my diet before the cancer developed had any impact on the development of the cancer, and I'm not sure whether or not what I eat now matters. Lots, and lots of questions. For now, and possibly never, no real answers.

Thursday, August 24, 2006

Naming the Relationship with Cancer, Part II

Since my post about whether to view the cancer as enemy or friend, I've continued to ask the question of how to name the relationship, my relationship, with the cancer that grows within me, and the cancer left when my surgery concluded in May. The responses of those who wrote in to this blog, and those of friends who emailed or called, were helpful as I continue to struggle with question. I absolutely get the perspective of the cancer as alien, dangerous and life threatening. And I have to recognize that those are my cells inside, gone haywire indeed, but my cells nonetheless. I am coming to think that the fallacy of the question I asked last time - Enemy or Friend? - is the fallacy of thinking I have to choose.

Dualism, making things appear to be exact opposites, forcing a choice between this or that, either-or, is something we do a lot in our culture. The problem with setting up that dichotomy, I think, is that life is so much more complex than a series of opposites. So, perhaps, it is with cancer and how I view it. Yes, I want it out of my body, and yes, I want to live. And perhaps I have to assume my "spiritual warrior" self to mobilize my energy, my focus, and my immune system to give myself the best quality and quantity of life I can, even with this diagnosis.

I have a young friend who seems to have straddled the question of how to name the cancer without needing to articulate the question. Lexie is the eight year daughter of my good friend Alice, and Lexie has a brain tumor, diagnosed when she was an infant. She has had surgery, and she is currently undergoing chemotherapy, no small thing for someone so young. Lexie's Reiki therapist helped her envision her tumor and a way of getting it out of her body, and Lexie and Alice work with the image each night before bed. After Lexie agreed that I could tell her story here, she described for me her process: "First, I use lasers to blast out the cysts which are in my tumor, making it smaller, and like a donut, with a big hole in the tumor. When the donut is left, I and pac-men eat the donut together, and after a while, all that's left are crumbs. Then the crumbs are rolled into my blood, and they come out my body in my pee. At the end, I imagine a nice, healthy brain." Alice comments that "in this image, Lexie and the lasers and the pac men all work togehter to 'eat' the tumor, which implies she is somehow owning it and making it a part of her in a nonharmful way, much as we consume food and it becomes part of us. So, I think rather than just blasting it out, she takes responsibility for consuming it and digesting it and eliminating it on her own." I think Lexie has chosen a perfect way to straddle this duality, and I'm grateful to Lexie and Alice for sharing these images. For Lexie, the chemo is hard, the tumor is resistant, and still Lexie is doing remarkably well.

Visualizing the cancer in order to mobilize the body's defenses was a technique proposed a number of years ago. The first proponents I know of were the Simontons. Even though I didn't have cancer at the time, and didn't know anyone close to me with it, I remember reading about their success in getting people to image the cancer, and then to use their body's immune system to fight the cancer. In the process, patients were asked to image the cancer, and also to image their immune system fighting the cancer. As I recall their approach, there was something organic about their thinking because it was using the body's natural defenses. I also like the idea that healing doesn't come just from the chemotherapy, and the efforts of others in reducing the size of the tumor and helping the body to get rid of these dangerous, wayward cells, but that it comes with full cooperation and active participation of the person affected.

So, perhaps I'll work on a visualization that seems effective to me, and works with my body's natural methods of healing. And, I've begun a conversation with my friend who befriended her cancer, but I haven't yet asked her how that worked for her. Please respond, if you have thoughts about all of this.

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.

Cancer: Call it enemy, or call it friend?

In his blog earlier this week, Leroy Siemens examines a posting from a mother who asks whether or not her daughter, who died from cancer, has "lost" if the fight for life against the cancer is a "war." Of course, he points out that we would not stigmatize the now dead cancer patient by saying they "lost the war," but so often those with cancer and those writing about cancer describe the fight for life as a war, a battle, a fight, and those fighting for their lives as warriors. I'm not entirely comfortable with this language, this image, although I certainly want to continue living, which would mean "winning the fight" against this gallbladder cancer.

A longtime friend who has had several different cancer diagnoses, including breast cancer, wrote to me soon after my diagnosis, and encouraged me to make ffriends with the cancer. "It is part of you," she wrote, "so why not make friends with it?"

Similar language is expressed by Dawna Markova in her book I Will Not Die an Unlived Life, where she describes her survival from a cancer diagnosis many years ago, and her discomfort with the "battle" language so typical of describing a fight for one's life following a cancer diagnosis. She writes:

When cancer first came into my life, people all around me treated it as the enemy. I was told I had to join the medical team and we'd fight together to defeat it. This was the wrong thing to say to someone who was the last one to be picked for any team. I was much happier sitting on the sidelines and encouraging the other players. I was totally unskilled at defeating anything. So, I secretly went my own way and decided that I was free to choose the meaning of the healing experience. I decided I would develop a friendly relationship with the cancer, which was something I was good at.

However, Markova does not go on to say how befriending the cancer helped her to heal from it, to move past it, to have it not take her life. Rereading this passage, I can see that one way would be to put the emphasis on "healing," not on cancer. I can also see a "lessons to be learned from the cancer" aspect of befriending it, but I don't see how that can lead to healing of the physical body. So, perhaps a part of me does want to "beat" the cancer, because I can't see how I can continue to live as long as it is in my body, and the doctors tell me that they know of no way to kill gallbladder cancer. Again rereading Markova's words, I am reminded of my competitive nature, my desire to excel, to do a thing well. But, more than being a "good" cancer patient, I want to be successful in my intense desire to have my life continue, and not to have it end with this cancer.

Battle image or friend image? Which has the potential for more healing, for me in this situation? I feel that I need to hold this question in my heart and see what answers come. While I wait for those insights, I am interested in the experiences, thoughts, impressions, wisdom from those reading this blog. And, perhaps I should call my friend who befriended her cancer and ask her how she did it.

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.

Tuesday, August 08, 2006

How Did I get Here?

I haven't actually met someone else who's been diagnosed with gallbladder cancer (GBC), but I have read some stories in blogs and on discussion boards about the experiences of others. My initial questions about someone else with this diagnosis focus on how and why the disease was diagnosed, and how they have been doing since the diagnosis. I mention some of the details of my experience in my first post, but want to say more.

Before surgery, I had no pain and my only symptoms were funny colored urine and itching. A week after the symptoms began, I saw my doctor, and by then some jaundice was visible. I had an abdominal ultrasound which revealed stones in my gallbladder (not a surprise as many family members have had stones and had their gallbladders removed), but no indication of why my bile duct was blocked. The doctors attempted an ERCP (Endoscopic Retrograde Cholangiopancreatography) the next day, but could not clear the blockage, and in fact were unclear about the cause of the blockage. A CT scan two days later revealed little more, a second ERCP was attempted, again unsuccessfully, and then surgery was performed, at first laparoscopically, and then with a full incision. The surgeon could tell that I had cancer in my bile duct; he performed a bypass, removed my gallbladder, and took samples of other tissue for testing. Pathology tests performed after the surgery revealed that the cancer originated in the gallbladder, and had spread to some surrounding tissue (besides the bile duct), meaning that I have State IV gallbaldder cancer. It's a grim diagnosis.

The cancer is rare, affecting 3,000 to 7,500 people in the United States with a new diagnosis during this year. (The numbers vary somewhat depending on which website you go to, but the numbers are very low given the total number of people in the U. S. right now.) Many people survive only 2-6 months following the diagnosis. Some folks seem to make it longer (and I'm determined to be one of those), but it's not clear what percentage do well over more time, and whether or not one of the new drugs being used for GBC are making a real difference over time in quantity and quality of life.

Since the surgery and the diagnosis of GBC, I have been recovering from the surgery and dealing with many responses to the diagnosis (more about that another day). In mid-July I had another CT scan and bloodwork. My cancer marker was down, and there was nothing in my (clearly rearranged by surgery) abdomen to indicate that beginning chemotherapy made sense then. I am feeling amazingly well, and waiting until I feel bad or the spread of the cancer shows up on a CT scan to begin therapy.

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.