Showing posts with label Leroy's blog. Show all posts
Showing posts with label Leroy's blog. Show all posts

Wednesday, November 08, 2006

Out of Control

Out of control is how the life of a cancer patient often feels. I certainly know the feeling all too well. Did I do something to make my gallbladder cells travel down the mutation road? Am I somehow responsible for getting cancer? Mostly, I think the answer is no, and that I will probably never know why the cancer cells were able to develop in my gallbladder. In addition to worrying about the cause of the cancer, I worry about whether I am doing the right things to prolong my life, in fact I worry and wonder about whether or not anything I do matters with respect to the cancer again affecting the functioning of my body.

I am not alone in this wondering. On one of the (three) discussion boards for those with gallbladder cancer, Melissa just wrote to me, in response to my posting that I'd had a clean scan in September:

I am glad to hear that your scans have come back clean, I can only wish that mine would have but I am not giving up hope. What type of diet are you doing. I am willing to do what I can to kick this thing in the butt. I went 6 months of treatment and then 4 months clean and my last scan showed that it is back so i am doing the chemo thing again. so if you can tell me what it is that you did that might have helped i would love to hear....... right now I am just so tired of having people tell me how sorry they are and that they have never seen someone as young as me get this cancer..
some words of advise would be great. thanks


My heart has been aching for Melissa since reading the question on the discussion board, and I'm still working on my response. But I know that mostly I'm going to say that I am doing things to try to stay healthy, but I really feel that it is grace that has kept me free of signs of the cancer so far, since the initial surgery. Grace, a wonderful, amazing, awesome gift of ongoing life and work and time with my family and other loved ones. I don't think I did anything, really, to cause this cancer, and I don't really think that anything I'm doing has given me the clean scan results I've gotten over the past months. Don't misunderstand; I'd like to think that I'm in control, and that my actions are having an impact. Don't misunderstand either, and think I'm going to stop doing the things I'm doing, because I have hope that they may be making a difference, keeping the cancer from spreading. And at the same time, I have to admit to not feeling in control of any of this with my actions.

The day I began this blog entry, I read Leroy's blog for November 8, and I was amazed to see that Leroy was also writing about the search for meaning of the cancer, and how out of control we feel with our diagnosis. We want meaning, we want hope, we want to think that we will recover and that life will go on. When we don't have symptoms or signs, or when we are actively in remission, we are hopeful but worried. When we are active with the disease, recovering from surgery or in treatment, we want to know what we can do to get better. We want successful treatment, the right diet, good medical care, recovery. We want something to do to get better, to feel in control, even if in small ways. Leroy has written about this more than once, and Melissa's question to me so crystallizes the issue.

What helps when we feel out of control with cancer? I don't know. I know that my life feels like daily walking the line between hope and despair, between what is known and what is not known, between thinking I could be in control and letting go of the belief I can control my body, between blame and surrender, between opening to healing and recognizing the truth of the cancer still in my body, between envisioning the cancer self-destructing in the sunset and recognizing the medical reality. The lack of an answer, a clear sense of the future, of what path my life will take, is painful and challenging, but it's what is right now, for me, and for so many others with gallbladder cancer. So I'll keep doing what I'm doing in hope that it is helping, and I'll keep hoping for healing.

Tuesday, October 03, 2006

"Body Worlds" Exhibit viewed by a Person with Cancer

Today I went to see the Body Worlds exhibit (An Anatomical Exhibition of Real Bodies, using a preservation technique called plastination) at the Boston Museum of Science. I took a class of freshmen in a seminar focusing on self and identity, and so I went as a teacher, professor, and also as a learner. When I arrived, I found myself viewing the amazing bodies of the exhibit through the lens of a person with cancer.

Before I say more about that, I want to also say that I felt privileged to see what's inside our bodies in an amazing, graphic, way. I felt initiated into the inside of the human body in a way that has traditionally been available only to medical students, doctors, nurses, and others in the medical profession.

Having said that, I was aware from first stepping into the exhibit that I was looking for information about my own body, not just participating in an abstract exercise. Looking at bones first, I checked out the fibula, to see a representation of my ankle broken last winter, looking for an ankle which carries a metal plate and six screws that poke a little out of the bone, just like mine. They showed metal joint replacements, but no metal plates stabilizing broken bone. In one part of the exhibit, there was a body with nerves exposed, from head to toe, including nerves across the foot that must be the ones that sometimes tingle next to and down from those stabilizing screws.

The internal organs come a little later. I saw lungs and liver, stomach and kidneys, and finally a gallbladder, even one with gallstones. I saw livers with cancer metastisized in multiple spots across the organ, and I saw cross sections of cancerous lungs with tumors, some small, some large. I saw brain tumors and breast tumors. I didn't see a cancerous gallbladder, or a cancerous bile duct, but of course these are both rare cancers. I wanted to see the relationship of all of these internal organs to each other, to see where they fit together, how the gallbladder is tucked up under the liver, how big the liver is in relation to many of the other organs in the area.

There were a lot of smokers' lungs, some with cancerous tumors. Last week in his blog, Leroy talked about not wanting to "police" the behavior of other people, not wanting to be their moral guardian. He doesn't choose to criticize someone who smokes for example (although he does think they should quit!). I have to admit that I was pleased to see many samples of smokers' lungs, for my college students and others who smoke. If none of my students smoke, they would be an unusual class, as in the last few years I have found at least a handful of smokers among the young adults in every class. The lungs of smokers were dark and discolored, and looked very unhealthy and very different from the healthy lungs.

Going to the exhibit, I expected to be informed and educated. I didn't expect to be engulfed by feelings and thoughts and worry about my cancer, my body, my still cancerous bile duct. I wouldn't have missed the exhibit, but I would have enjoyed it more a year ago when I wasn't looking for signs of cancer, signs of internal organs not doing their job because of cancer.

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.

Thursday, August 17, 2006

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.