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.

Friday, September 22, 2006

The Amusement Park - Not!

Since many/most of you reading this blog are friends and family, you already know this, but I need to write about it. Cancer affects far more than the person diagnosed, and even that person's immediate family and caregivers. I suppose that it's true of other acute and/or chronic illnesses, but I haven't had any of those diseases. I have cancer, and it has turned my life, my family's life, and those of many of my friends, upside down. Inside out. Backwards. With a stomach-churning drop in between. A modern day roller coaster ride.

I've written a lot about the impact of the diagnosis on me since I began this blog, not quite two months ago. I haven't written directly about the impact on my family. My immediate family consists of Patty who is my life partner, lesbian lover, Massachusetts spouse, and our two children, Lucy, age 10 and Nathaniel, age 8. Although I turned 59 this summer, I do have a young family, and it has been especially painful to contemplate not being here with them as they grow into adolescence and adulthood. Patty is my anchor, and the one who makes me laugh.

The first time we saw the oncologist, last June, a week past surgery, we waited a long time for the doctor to come into the room, and I was feeling incredibly anxious. "Make me laugh," I said to her, and she did. It was cancer humor, grim humor, very funny to us at the time, but not so good in translation, so I won't try to recreate it. At the appointment, the doctor stressed the importance of starting treatment as soon as possible (although not until at least a month had passed post surgery). After, I would double check my recollection of something he said against Patty's memory. We had taken a few notes, but I wondered about tone of voice, extra meaning, also.

In July, when we saw the oncologist a second time, he said that I looked good, didn't seem to be jaundiced, and probably wouldn't need treatment. We talked for a while about my diagnosis and his proposal for a clinical trial when treatment is needed, and, toward the end, I turned to Patty and asked if she had any questions. "Yes," she said. "Where is the urgency? We came back early from a planned 5 1/2 week trip out west because you said she had to start treatment right away! We could be in Yosemite National Park right now!" I appreciated her directness! He had the grace to admit that his earlier sense of urgency was unnecessary, and to apologize. "Things have changed," he said, because I was doing so well post-diagnosis.

After that visit, we talked about dealing with the slowing down of the pace of the disease from the initial diagnosis, and our new roles. Patty commented that when her job was to visit me daily in the hospital, and then to support my recovery when I returned home, she knew what to do. Now, just waiting, what was her job, she wanted to know. I confessed my uncertainty about this unfamiliar terrain, but replied also that her job was "to love me." "I am," she said, "but I still feel like I should be doing something."

This past Monday, Patty sat with me in the waiting room for the CT scan, watching me drink the barium, then leave for the scan. After, we went upstairs to see the oncologist. He was nice enough to actually look at a few pictures I'd brought of our trip out west, and to make small talk. I wrote in my last post that his review of the scan indicated no need for treatment now. When we left, I was relieved and happy, and so was Patty, but she was also feeling, she said, like she was riding a tilt-a-whirl at the amusement park. First we prepare for this, then that. Something is different, and we are up, or we are down. The shifts themselves are exhausting, even when the news is good.

As we talked this week, we finally found an image that works for where we are now. "I feel as if I've been sprinting and preparing to keep sprinting. It's really tiring." Patty said. "Things have all happened so fast. Now, almost four months post your diagnosis, I guess I need to think of this as a marathon, not a sprint any longer."

Sports metaphors aside, as I drafted this post and talked with Patty about how to represent her role in all of this, we noted with irony how often images from the amusement park speak to our experiences. The images of roller coaster rides, the tilt a whirl, the"mad teacups," even the merry go round, keep coming to us. Why do we in our culture like these rides? Is it a chance to face our fear and conquer it? Well, the amusement park assortment of rides that makes up cancer definitely brings up our fear, in a real and palpable way. Still, I wish we could get off the Cancer Ride.

Monday, September 18, 2006

Good News!

As you know, I was scheduled for a CT scan this morning, followed by a meeting with the oncologist. As he reviewed the pictures from the CT scan, he saw nothing that indicated change from my last scan in July, and so he recommends no treatment right now. As a results, I got to hear the words (aside from "you're cured!") that I most wanted to hear: "See you in two months."

He even went so far to say that about 10% of those with gallbladder cancer have a slower growing type (than the other 90%), and judging from how good I feel and the fact that the scan indicated no cancer growth, I could be in that group. He even called my cancer cells "pokey!" That was a word I was delighted to hear.

I'm also pleased to report that they appear to be experimenting with flavors for the barium drink they provide to help with contrast on the CT scan. I had "banana smoothee" today, and I noticed a "berry smoothee" in the room, and a "strawberry" flavor as well. I was so thirsty by the time I arrived for the scan, it made the barium go down much easier. This was my third CT, and I'm feeling like an old hand at it!

Thank you to each of you reading this, posting or emailing or calling or simply holding me in your thoughts and prayers for all of the positive energy flowing my way. I am so grateful for all of the loving support, and feel it deeply, and feel that it helps me in staying grounded on this roller coaster of a ride called cancer.

Friday, September 15, 2006

Fear, Anxiety and Trepidation

Actually, I'm trying not to feel any of those things as my next CT scan approaches. Some of you know that I was originally scheduled for the next scan today, September 15. However, a few weeks ago, the oncologist's assistant called me to say that he would be out of the office today. I am rescheduled for the CT scan, followed quickly by an appointment with him, both early on Monday, Sept. 18. So, for those of you praying hard for me today, keep it up, and know that the test is still a few days away. And, for those of you watching and waiting, I promise to post something by the end of the day on Monday so that you will know what's in my near future, medically speaking.

Trying not to feel fear and anxiety, trying not to think about cancer, trying not to worry about whether or not the cancer has spread, and the CT scan will indicate that the time for chemo has arrived, is incredibly, impossibly difficult. Still, I'm working on it.

Work this week has been a good antidote to worry. Thinking about and teaching my classes, looking ahead to the next few weeks of material to cover, connecting with friends and colleagues in the city; all this has helped fill my mind so that I'm not thinking about cancer. I also devised a new routine for work weeks. On the night before I go to work, I am not reading any gallbladder discussion boards, not reading stories of the struggles of others with their chemo and with this disease, not reading any of the descriptions of gallbladder cancer. A simple discipline, but I felt that I slept better and greeted each day with a clearer mind.

And, I am trying not to suffer over my suffering. That phrase came back to me this afternoon, and I actually discovered its source by googling it. Turns out it's not from the Bible, not from a Buddhist teaching (although many of them are about suffering), but it is from the Book of Runes. Many years ago, as a spiritual discipline, I drew one rune each morning to focus my meditation and give me some words of wisdom as I began my day. It seems that Rune #21, Thurisaz - Gateway, is the source of this line. It reads: "When you are undergoing difficulties, remember: The quality of your passage depends upon your attitude and upon the clarity of your intention. Be certain that you are not suffering over your suffering."

Since this out-of-control situation began, I have been powerfully aware that the only thing I have control over is how I respond to this hand dealt. I see these lines as reminding me that, even as this weekend unfolds and I go for the test and appointment on Monday, how I anticipate and respond to what happens is up to me.

I don't know that I want to use a visualization presented earlier in the text about this rune, but it is intriguing to contemplate. "Visualize yourself standing before a gateway on a hilltop. Your entire life lies out behind you and below. Before you step through, pause and review the past: the learning and the joys, the victories and the sorrows - everything it took to bring you here. Observe it all, bless it all, release it all. For in letting go of the past you reclaim your power. Step through the gateway now."

Having written all of this, I feel as if I've come full circle. I hate having cancer. I hate feeling the fear, anxiety and trepidation, and then feeling I need to rein them in. I hate having the life circumstance that makes me face all of this. The things I used to fret about; relationship difficulties, completing all of the work I would commit to do, struggling to find time to exercise and eat well, the endless list that marks so many of our lives in this day and time, they all seem like such small things. I want my life back. The life I had before cancer.

Tuesday, September 12, 2006

"Today is a good day to die"

Please don't panic! I'm not losing my will to live, or contemplating the end, I just had another epiphany today in what may feel like my ongoing litany of living in the moment.

For those of you who have responded to my blog, by posting a response online, or by emailing me, I value the way you are reflecting back to me what speaks to you in what I have to say. Whether or not you are struggling with or have struggled with a cancer diagnosis, or whether you are or have been a caregiver to someone with cancer, whether you are someone who has stumbled on my blog and found it has something to say to you, or whether you are a friend who loves me, I thank you for being part of this online conversation.

Today was a stunningly beautiful late summer day in Boston. The sky a perfect blue, with wispy white clouds providing contrast. The air was warm in the sun, cool in the shade, comfortable with short sleeves, and invigorating to walk in. And walking I was, around 2:00, from Beacon Hill to Back Bay in Boston, to a dental appointment. (Since I like my dentist and was just going to have a fallen-out filling replaced, I had no dread about the appointment, just a sense of purpose.) And, I am moved to say, it was just such a perfect weather and sky day on September 11, 2001 in Boston, spurring memories of that day. Still, moving my body, seeing the interplay of light and shadow on the ground from trees and leaves, I felt transported to a state of pure joy. It was a moment, a moment that reminded me of this line: "Today is a good day to die."

The first time I heard someone say it and mean it was during a two week canoe trip with 15 other adults on the north-flowing Harricanaw River in Canada, about fifteen years ago. We were more than halfway through our wilderness adventure of canoeing to James Bay, and one morning we awoke to a sandy river beach, a gorgeous blue sky, and a perfect temperature. One of my fellow travelers, Terri, said, "Today is a good day to die." I didn't initially know how to take his comment, but then I got it. We were challenging our bodies, experiencing terrain new to us, living in the moment. We were in the right place, at the right time, and our trip was beginning to flow like the river. If our lives had ended that day, we could have died happy, knowing we were living in the moment and doing something we loved.

As I thought about sharing my insight from this afternoon, I worried that some of you, my friends, might panic. I briefly considered the title of "This moment is a good moment to live, not die," because it was a feeling of the moment, but the title definitely lacks punch. When I left the dentist about 90 minutes after my "moment," the air was cooler, the sun not so bright, and though I hoped that the feeling of perfection would return, it didn't. Because I think that it's not really about "perfect days" [for dying, or for living], but rather about "perfect moments" for living, and for realizing that, in those moments, we can be transported beyond our ordinary selves. In that moment this aftenoon, I felt the rightness of the day and my place in it. For that moment, nothing else mattered. Even cancer.

Friday, September 08, 2006


Last month, I was sitting on a Cape Cod beach with my family and friends when my friend Maria asked me if it was hard, being there, having fun in the moment, but knowing about my diagnosis and the future. I thought about the question for a moment, teared up, and responded that it was bittersweet. My life is filled with bittersweet moments these days.

This past week I attended convocation, where the University formally welcomes new freshmen to campus and to their role in the University community. "Welcome to the Class of 2010," the University president said. And I thought, as I never had before, "Will I be here in 2010 to see these incoming students graduate?" Added to that thought was an even more personal question about 2010: Would I be here to see my daughter enter high school? Would I be here in 2014 when she would graduate from high school? Painful, bittersweet thoughts.

Yesterday I stood before a new class of students, discussing the course, welcoming them to a new field of study, and suddenly it hit me. The wall of sadness that came to me was powerful, and I had to shift from it in order to stay present to the class. The last time I stood before a class, I didn't know that cancer was growing inside me. I envisioned myself teaching well into the next decade of my life, my 60s, and teaching into the next decade of this century. Perhaps I will indeed defy the odds and medical predictions and be here then, but I no longer assume that will be the case. And, the sweetness of all of this is that I am teaching, I am standing before new groups of students, sharing what I know, supporting them in their learning, and in being active participants in the changes, academic and personal, that ideally are part of their college years.

As I have pondered these thoughts and feelings, I have noted that the sweetness is in the present moment, and the bitterness is in looking toward the future and noting its uncertainty. And, the truth is that while we humans like to look to the future and make plans, and anticipate with delight good things we want to have come our way, the future is not within our control. So, once again I return to now, to the present, to the moments over which I have some control, over how I feel, and how I greet each moment.

Thursday, September 07, 2006

Having Cancer: A Full-time Job

Having a cancer diagnosis is a full-time job, I've decided. I shared that observation with a nurse friend a few weeks ago, and she said that she tells her advanced nursing students exactly that about having a chronic illness. And here I thought I'd had a new insight!

Given that I'm not yet having any regular treatment for the gallbladder cancer, you might ask what takes so much time about having cancer. First, it occupies all of those empty spaces in my mind that I would just as soon remain vacant and quiet. Many nights, I try to sleep, and I start thinking about cancer; I wake up during the night, and I think about cancer; walking, sitting, waiting, any time my mind is not actively engaged, it turns to thoughts of cancer. When I have moments or even stretches of time when I forget that I have cancer, I am delighted.

Aside from thinking about it, I gather information everywhere I can. On my side table, I have a pile of books from the library about cancer and healing: Bill Moyers - Healing and the Mind, What to Eat if you have Cancer, Cancer Clinical Trials. and One Renegade Cell. I have only browsed the books, but there they sit, perhaps holding some valuable gem of information. My friend Alice gave me Return to Wholeness by Dr. David Simon, medical director for the Chopra Center for Well Being, using Ayurvedic techniques, diet, nutrition, herbs and perspectives to assist in traditional cancer treatment. He has wonderfully practical suggestions like how to stimulate an appetite depressed by chemotherapy, and how to work cooperatively with medical personnel and the healing potential in our own bodies to maximize healing and success for treatment. While I have learned much from the first half of the book, the most memorable part for me, so far, is his description of a study that was done by Dr. Robert Ader on how our minds can affect our immune system.

In the study, rats were given sweetened water and then injected with a chemical that would induce nausea and vomiting, and temporarily suppress their immune systems. After the rats had recovered, they were again given sweet water and an injection, this time with saline. Because of their conditioning, they were nauseated from the sweet water and saline injection, but they also showed suppression of their immune system even though no drug was given to cause that affect. Simon comments that "Their immune cells had 'learned' that sweetened water caused them to be suppressed." I haven't started chemo, but it seems that there is a powerful cautionary tale here for the future.

In addition to reading books, I check out the discussion boards to see what's up, read about the chemo drugs on the site, check out the latest research in PubMed, and read the 17-page protocol for the clinical trial proposed to me once again. (This link will take you to the National Institutes of Health site for the particular clinical trial I'm considering. The home site of can introduce you to other clinical trials around the country.) The "PubMed" site is a government website providing abstracts of medical research around the world. I created an "account" at no charge, receive email notices when a new batch of article abstracts on gallbladder cancer is listed, and can see what's being currently published. Knowing very little about medicine, some of the abstracts are full of medical terminology I don't understand, but the more I read, the more the abstracts begin to make some sense. Some of the recent research is quite encouraging, as new drug combinations, or drugs administered differently have a notable impact on survival of patients with gallbladder cancer.

However, a cautionary note for me. I went to the Bloch Cancer website, full of practical and encouraging information, but when I checked the list of patients who were five years or more post diagnosis, and had a rare cancer, there were none listed with gallbladder or even bile duct cancer.

So, lots to read, lots to think about, lots to learn. A full-time job indeed.

Saturday, September 02, 2006

Resting, Truly Resting

On this Labor Day weekend, I'm thinking about resting and not laboring. It's become a cliche in our culture to talk about how busy we all are, and like many cliches, it's largely true. Many of us find ourselves going nonstop from morning until night, and then collapsing in front of the television, which can shift our focus, but isn't truly restful. One thing I have read in many essays, blogs, and books, is how often a diagnosis of cancer causes us to re-examine our lives, and how we spend our time. I have joined those numbers over the past three months as I recovered from surgery, took family vacations, and contemplated how I choose to live my life, including time to rest.

In his blog, Leroy Sievers doesn't talk much about the spiritual aspects of dealing with cancer, but in his August 9 post, he did ask his readers for "new tricks." He was seeking new ideas for getting through the day, making life with cancer more manageable. He received over 100 responses to that post, and I think it's because his question so resonates for those of us with cancer. And, even without cancer, we can all ask how we want to make our lives work better.

True rest, I think, can be a spiritual discipline, and many spiritual discplines can help us truly rest. Many of us churchgoers know that the words "sabbath" and "sabbatical" derive from a Hebrew word for rest. The sabbath is intended to be a time for rest and reflection, but I think none of us need to wait for one special day of the week to rest and rejuvenate. So, as I have been contemplating how to change my life, to slow it down, to find more rest and rejuvenation in my daily life, I have been contemplating spiritual practices and how my living and working space can support stepping out from the busy-ness of daily life.

Meditation and Centering Prayer. For many years, I meditated regularly, but after the birth of my (now 10-year old) daughter, I found it hard to maintain, and stopped meditating. Two years ago, I returned to a regular meditation practice, initially just one day a week, and, when I was joined by a friend in that weekly meditation, it became a grounding highlight of my week. Over the past few months, I have chosen to return to regular meditation. For me, meditation is a time to sit in silence and to listen for the voice of God. Some days my mind is very busy and I need to bring my attention back again and again to my mantra (a simple sying that grounds me in God's presence), and some days I feel truly lifted out of my busy mind and into a spacious and holy place, if only for a few moments. I believe that the spiritual discipline of meditation is a powerful tool for deep rest.

Sacred Space. I have always tried to maintain some space in my house for sacred objects and photographs of loved ones who have died. I have added a new sacred space this summer in a corner of my bedroom, a small table covered with the first silk scarf I painted containing images of water and sky, and then laid with a candle, a smudge stick (for cleansing the air), a few crystals (because they are beautiful and can absorb energy around them, I believe), and a few special books. I also lay on the table a strand of beautiful prayer beads and a pocket angel with the word "Harmony" on the back, given to me by my meditation friend. Just looking at the table grounds me, and sitting next to it in meditation creates a corner of grounded, quiet, sacred energy.

And, when I meditate I can wrap myself in a colorful hand knit prayer shawl, made for me and prayed over by loving friends.

Sacred, Spiritual Reading. Whether it's the Bible or something written more recently by a spiritual teacher, reading about the inner world, the world of spirit, offers me the potential for grounded, healing thoughts. I am going to be writing more later about some of the books that have moved me, but for now, I want to mention a pamphlet sent to me by a professional colleague and friend who is a cancer survivor (Thanks, Elizabeth!) entitled "How to Survive and Thrive in the face of a life-threatening illness." A healing group from her church put together a lovely booklet with personal stories and reminders about things that can be healing; prayer, dreams, loving companionship, spiritual reading, living in the moment, art, and holding hope. This book just arrived in the mail yesterday, but already it has spoken to me powerfully of the commonality of our struggles with cancer, and the power of spirit to mend us, spiritually and, sometimes, physically.

Reiki Energy. Five years ago, I was trained to be a Reiki healer, which essentially means trained to channel this energy. I'm not going to try to explain the process here, but I do want to say that I feel the energy fill my body when I open to it, and that I do believe Reiki opened a channel to universal healing that is available to all. (That may sound a little strange to you if you have had no experience with Reiki, but I am speaking for myself and what I know.) I am grateful to the friends who have asked me if they can channel Reiki energy to me from a distance, and I would not hesitate to seek a Reiki healer for hands-on work if I felt in need.

As I come to the end of this post, and look at where I began, I wonder if this all reads like a lot of work, and not rest at all. Setting up the routines and making the time for it may feel like work, but once I am in the rhythm of attending to my need to rest and rejuvenate, then each of these offers solace, peace, rest and comfort. Taking care of myself doesn't have to be work, but it does require intention and attention.