What to do while waiting . . .

What is there to do while waiting to take a test, and then wait for the test results, when the test isn't even one I can study for in order to ensure a better outcome? My CT scan is tomorrow, and, while I've made it through the week pretty well, with only low level anxiety, today has been harder.

I stayed home from work today, because I spent most of last night in the bathroom, having "gastrointestinal disturbance." I woke still feeling sick, and tired from not getting enough sleep, to actually go to work. So, this morning, I caught more sleep and slowly began to feel a little better. But then, I found myself restless, worried but trying not to worry, about tomorrow's scan. So, what to do?

Sharpen all of the pencils in the house. In a house with two school-age kids, pencils are hard to find, and even harder to find with a point. Tracking them down, sharpening them, and returning them to their various resting places was a totally engaging and satisfying activity for about half an hour.

Water all of the house plants. I'm always meaning to do this, but too busy, or it's evening (when it's not a good idea to water them), and sometimes too much time goes by between watering. Good for another half an hour (yes,I do have a few house plants!)

Go through all unopened junk mail (with a few bills and interesting pieces thrown in). I tossed out a lot of unopened envelopes from charities looking for donations (amazing how much mail you get when you make some charitable donations, and everyone wants your money), and from various sources. I also found a few unpaid bills that I need to attend to before I go for tomorrow for my CT scan.

Download all "updates" on my computer. Also time consuming, but not attention consuming. Will the new update for Windows Explorer actually fix the problems the last one had? I have no idea!

Contemplate making a new "scrapbooked" page for the front of Patty's daily calendar. She gets a calendar book that's 8 1/2 x 11" with a window on the first page. I personalize it for her with some pictures of the family in a scrapbooked page. I haven't done one yet this fall, and need to get busy! Perhaps that will be a weekend activity, because so far I've just thought about it.

So, those are a few of the lowkey things I've done to keep myself occupied today. And, I do actually have some good news about the delay between tomorrow's scan and seeing the oncologist (6 days, but who's counting?). I talked with my surgeon, Dr. M, from last summer, and he will read the scan online, and call me with his assessment, no later than Saturday morning. He also told me (Thanks, Woody, for the information about getting your scans on a CD) that I can get the visual images also, since they are part of my hospital record. He doesn't know if I can get the pictures the same day, but I can definitely get them. I'll find out more tomorrow.

As Thanksgiving approaches, I realize that I am immensely grateful for Dr. M, who is one medical person who actually gets it about the anxiety of waiting for test results. When I explained my concern, he offered to call me before I could ask. He said that with folks in remission, he frequently tells them to anticipate, with a six month test interval, five months and 29 days of relative peace of mind, and then a day of major anxiety. So, he'll call me Friday if he has a long enough break from his surgical schedule, or Saturday morning if he gets tied up.

Updates to follow as I find more things to do while waiting . . .

Love, Cancer and Vulnerability

Lately, I've been thinking about the vulnerability of loving a person with cancer. Like many folks who are diagnosed with cancer, after my gallbladder cancer diagnosis I found that some of the folks in my life drew closer, and some pulled away. Those who drew closer have provided amazing emotional, physical, spiritual support for me. And those who have withdrawn are suddenly not in touch and not connected. I don't know whether any of my friends in the second group made a conscious decision to withdraw, or if it just happened somehow. And I don't know how many of my friends in the first group, those who have moved closer to me, have thought about the consequences of their closeness.

In the 1980s, two friends of mine were killed while vacationing in the Caribbean. Murdered on the beach, those of us left behind felt shock and horror at their sudden death. This may sound like an obvious observation, but their deaths brought me the realization that when we love someone, two things can happen. They can leave us, through death or dissolution of the relationship, or we can leave them, through our death or a decision to end the relationship. Those are the options, really. It was the first time I was able to articulate the true vulnerability of loving someone, whether it's a friend, an intimate partner or a family member.

In the past, I have been one who withdrew after a cancer diagnosis. My friend Willa was diagnosed with lung cancer almost three years ago, and soon after, we spent a wonderful afternoon eating and talking and sharing stories. She was determined to fight her cancer, and seemed convinced she would win the fight against the cancer. I left that wonderful day with a strong intuitive sense that she would not survive the cancer, and then I had to decide whether to be with her, loving her, but feeling strongly she would not survive, or whether it was better for me to withdraw. I did withdraw, except through cards and emails and phone calls. I didn't see her again before her death in May of 2005. Given that situation again, with my own experience, I would not withdraw, but I would need to decide how to talk with her about my own feelings about her illness. It's tricky.

As a person with cancer who would very much like to survive this illness, I also have a strong intuitive feeling that I am not meant to assume I will survive. I hope, very much, that this doesn't mean the gallbladder cancer will kill me, but the same intuitive sense that told me that Willa would not survive has told me to take this illness very seriously, not to assume that I'll survive. So I do my best not to be in denial, and to take this illness and diagnosis in full awareness of possible/probable consequences. I hope to be here for many more years. But I digress.

Thinking about the vulnerability of loving someone with cancer, I have been thinking about my friends, longterm and new. My longterm, long distance friend Bev has been consistent in her loving attention. When she heard about my diagnosis, Bev called me in the hospital with two things to say: "I love you. When can I come to see you?" Those were the perfect words for me to hear a day or two after surgery, still hospitalized and still reeling from the diagnosis. Later, when she came to visit and stay for a week, Bev sat with me in stunned companionship as we contemplated the diagnosis. "You need another spring, at least," she said, and we both cried. I haven't asked Bev if she's contemplated the intensity of continuing to be in relationship with me, knowing that I have a terminal diagnosis.

I've also been thinking about new friends. I talked with my new friend Sandy about this last week. We've had a developing friendship for less than two years, and we meditate together weekly. Sandy said that she has thought about the vulnerability of being in an ongoing relationship with me, and she doesn't plan to go anywhere. We talked about this and we cried. How much easier, I think sometimes, would it be for her to leave now, and not to wait, not to worry with me as I anticipate a scan, not to worry about where this disease will take me. I don't want to lose her friendship, but I think about this.

And I think about the vulnerability of my family, my family of choice and my family of origin. Because we are family, they may not feel they have a choice, although we all know that family members do sometimes leave when faced with disease, or financial hardship, or the lure of something more enticing around the corner. I think about Patty, struggling with me through the challenges of this disease, and of my children, who are surely too young to lose a parent.

Loving someone with cancer means being vulnerable to loss, to pain, to the struggles the disease can bring. If someone you loved had cancer, would you choose to stay in relationship? Would you move closer, or farther away, or maintain your current distance? Do you know? Could you bear the vulnerability?

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.

Just Under the Surface

I lost it today. Had a phone call from the office manager for the new oncologist. (Did I mention that I HATE changing doctors?) It turns out that he is not willing to see me on the same day that I have the CT scan, and in fact, wants to wait until the radiology report on the scan is available. Yeeeks! That is at least three-four days . . . I've been feeling "normal" lately, feeling that I'm handling everything well, and the conversation with the new oncologist's assistant sent me into a tailspin.

So, my CT scan is still scheduled for Nov. 17, but I don't see the oncologist, Dr. J, until the following Wednesday, Nov. 22. That's right, the day before Thanksgiving. His assistant tried to schedule the appointment for the day after Thanksgiving, and I said I simply could not wait that long. "This may be my last Thanksgiving," I said to her. "I can't spend the day in total anxiety about the scan results." I haven't spoken with her before, and felt incredibly frustrated with the conversation, and with the fact that the folks in charge couldn't have coordinated the transition better. I have had the two appointments for at least a month; couldn't they have let me know sooner about the new plan? Couldn't they have let me know so that all of this wouldn't be happening just as Thanksgiving arrives?

For the last three weeks, I've been teaching, and advising students as they plan their courses for next semester. I've been talking with them about graduating next May, or December in a year, or even in four years. I've done it without thinking every single time that I hope I'm alive when this future event happens. I've been feeling good, feeling "normal" (in the new normal sense of the word), and then today I was right back in my fear and anxiety.

I've read in Leroy's blog and the blogs of others with cancer about the difficulty of waiting for test results. I experienced it myself last July when I had to wait a day and a half to talk with the oncologist after my CT, and I felt anxiety in my body like I had never, never experienced before. Then Dr. S (my former oncologist) said he could see me the same day, and that felt so much easier, more manageable. Now I'm back to the waiting, knowing already now, weeks away, that I'll need things to distract me from my anxiety about the test results.

So, all of this fear and anxiety under the surface. The new normal for me. Things seem so fine, feel good in so many ways, and then the uncertainty of my future jumps up again and smacks me in the face. And I want to say to all of you who love me and are reading this that I am feeling good. My energy is good, my body feels as if it continues, still, to heal from the surgery, but I can walk faster, longer, better than I could two months ago, and I don't get tired so fast. The little spot in my abdomen that I talked with the surgeon about a few weeks ago continues to trouble me at times, but I feel good.

It's just this pesky uncertainty, the not knowing, the not knowing what the cancer is doing. I continue to visualize the cancer dancing, skipping, flowing, moving with whatever locomotion it wants, to the beautiful sunset. What does the future hold? What wiil be the outcome of this next scan? I don't know.

The River Ride - Part II

This post is Part II of my river trip story, tubing down the Virgin river outside of Zion National Park in Utah. The posting just before this one begins the story; this posting ends it. At the end are the Bible verses from Isaiah with which we began, ended and interspersed the story as I read it to our church.

When I surrendered, I could be on the river without fighting the experience. The river was flowing, I couldn’t get off. The rocks kept coming, and I was aching, and I could do nothing about it. So, I relaxed as much as I could given my exhaustion. I trusted that I was safe, ultimately. I just wanted the journey to end.
Finally, the first bridge came. I looked eagerly on the side where the road would be, but there was no path, no place to exit. Lucy and I kept floating and bobbing down the river. She was delighted, and I was dismayed. But once more, I settled into just being on the river, and surrendered to the experience. I felt relief that I had seen that first bridge, and dismay that the trip was only half over.

The second and third bridges came sooner than I’d hoped, having been told that the first bridge was halfway. Not soon enough to keep me from being completely exhausted, but soon enough that I didn’t give up. How could I? The river was flowing and carrying me along. And then, finally, almost three hours after we had left, the trip was over, and Lucy and I climbed out of the river and waited for our ride. In my journal later that day, I wrote that it was the best and longest “log flume ride” I’d ever been on, despite my exhaustion.

Later, I thought about that moment when I surrendered to the river, to the experience. I stopped fighting and let it flow, let myself go with it. And that surrender was healing, not of my physical body, but of my spirit and soul. Like life, the river kept going, and my surrender was part of living and healing and knowing that I could survive even the sharpest rocks and deepest drops.

Thinking about this birthday river trip, I see it as a metaphor for my life, and especially my current life changing journey with the cancer diagnosis. There are tranquil times, when I have no cancer symptoms, and my recovery from the surgery is going well. There are rocky, rocky rapids when a CT scan is scheduled, and I worry about the cancer growing and about needing treatment. There are times when I surrender well to the challenges of my illness. Then, as on the river, I trust that I am safe, that I can live in the moment, and that I can savor the life I have. Then a body twinge throws me back into the rocks, and again I am challenged to surrender.

All of us, I think, are on a river trip, the river we call life. There are tranquil times, and at our best, we savor and appreciate them. And many of us encounter rapids and rocks and challenges we feel unprepared for. Our challenges may be physical illness like mine, or the difficulties in relationship with a spouse or family member or colleague or dear friend. We may experience addiction, failure with work, or deep disappointment with our parenting or in our children. We may find that growing older is harder than we ever thought. We grieve the loss of loved ones, those who have loved us and held some of our history. Whatever the rocky places in our rivers, we are challenged to surrender, to turn over to God our need to be in control, and to trust that God holds us safe. God offers healing, if not in body, in spirit, mind, soul, and heart, if we can ask for God’s company on the journey.

"Fear not, for I have redeemed you;
I have summoned you by name; you are mine.
When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.
For I am the LORD, your God”

The River Ride - Part I

Last Sunday was Healing Service Sunday at our United Church of Christ church, and Patty and I did a "dialogue" sermon. I did the storytelling, and it's the story of a river tubing trip I took last summer, soon after surgery. Because it touches so many of the themes of this blog, I wanted to post the story here. It begins with the Old Testament reading that Patty read at the beginning and end, and at significant places in the story. I have only placed it at the beginning of the blog entry.

The River Ride

Isaiah 43:1-3
"Fear not, for I have redeemed you;
I have summoned you by name; you are mine.
When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.
For I am the LORD, your God”

On my 59th birthday, June 18, this past summer, Patty, Lucy, Nathaniel and I had begun our southwest trip at Zion National Park. That morning, we hiked along a river, and in the afternoon, Patty proposed a tubing trip down the same river, but outside the park. Tubing! It sounded like great fun on a hot, dry summer birthday afternoon. Patty and I had tubed down a tranquil Pennsylvania river many years ago, and it had been delightful. I was ready to go, despite the fact that I was 3 ½ weeks post major abdominal surgery, as most of you know.

The surgery was to clear a blocked bile duct and remove my gallbladder. After the surgery (again as most of you know), I was diagnosed with gallbladder cancer, a rare, aggressive cancer with a poor prognosis. Our family went on our long planned trip to the southwest anyway, and on my birthday, my recovery from the surgery was going well, but I was still pretty weak.

We went into town and rented four tubes. I saw the sign on the wall that listed health conditions that counter indicated the wisdom of a tubing trip, but I assumed they applied to someone else. Although I was recovering from surgery and staggering from my cancer diagnosis, I still saw myself as an essentially health person. (Go figure!)

As soon as we got to the river, it was clear that the water level was low, and there were lots of rocks in the river. Lots of rocks. As soon as he saw the river, Nathaniel’s response was dramatic and negative. He did not like tubing on this river, but we encouraged him initially to try it and see if he liked it better with experience. After about 10 minutes, Patty realized that this trip wasn’t meant for all four of us, and she and Nathaniel pulled out. The water was moving fast, and we had passed two small rapids before Nathaniel and Patty left.

I never considered getting out. It was my birthday, I was up for some fun, Lucy was loving every minute, and clearly needed an adult to be with her. They had told us that the ride would be about 1 ½ hours, and I was ready.

Lucy and I continued on, with the water continuing to move quickly, more little rapids, then some longer, larger rapids, and soon, no place to get out of the water. Every time we hit rocks, I had to lift myself up in the tube to get from being bruised. Sometimes I would be caught on a rock, and would have to push myself off to get back into the flow of the river. Sometimes a tranquil space would open up, and then there were more rocks, more rapids.

One hour or so after we began, I was done. I was exhausted, my arm and stomach muscles ached, the sun was hot on my skin, and I wanted to get off the river. There was no exit.

The tube people had told us that we would go under one bridge about half way, and then we would see a second and third bridge toward the end, and we should get out then. When I was tired and done with the trip, we had still seen no bridges.

After realizing how exhausted I was, I fought the river for a while, wishing for the bridges. I told Lucy that if there was a place to get off at the first bridge, we would leave. She was disappointed, and made it clear that she didn’t want to leave before the end. Lucy was loving every minute of the trip. Finally, I surrendered.

Continued on the next posting . . .

Can Cancer Cells Change?

Let me start by saying that I have no idea of the answer to the question asked. I'm not a scientist, not a researcher, I have only a general lay understanding of what cancer cells are and how they come to be. But, in my exploration of blogs written by others with cancer, (this time from a blog by Teresa, who has oral cancer) I came across a link to a website that presents an animation of the inner life of a cell.

The animation is facinating, accompanied by wonderful piano music, and presents elements of cell life that I've never seen before. The Inner Life of a Cell is worth watching, perhaps over and over.

When I watch, I wonder if seeing the animation can somehow help my cancer cells "learn" how they are supposed to be, if they were healthy, functional cells. As I asked before, I wonder if cancer cells can learn, can change, can be different from their mutated selves. Can they be normal? So, the scientists may say not, but who knows? The more I learn about cancer and cancer treatment, the more I see that it's both a science and an art, and that so much is unknown.

I want to know more about how healthy cells function when I see this, about the elements of a cell. There is information from the producers of the animation, but it focuses more on how they created the animation, rather than the science. You can read what the animators say here. Apparently, the animation was created for Harvard University biology students.

So, I watch this animation and I wonder "Can Cancer Cells Change?" Or, do they just need to die and stop threatening the life of those, like me, that they live in?

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.

Visualizing the Cancer

In two earlier posts, (Cancer: Call it Enemy or Call it Friend? and Naming the Relationship with Cancer, Pt. II, both from August), I wrote about the difficulty I was having trying to ascertain my relationship to my cancer. The "Cancer: Call it Enemy or Friend?" post drew quite a few impassioned responses. Those responses, my further thinking, conversations with friends, and meditation, have all helped me further clarify my relationship with the cancer.

In August, I was meditating and decided to "talk" to the cancer. At that point I didn't try to visualize it, I just had a conversation. I told the cancer not to rush, that there was no place in my body it needed to move to, and that it didn't need to be moving around. I told it that its presence endangers my life, and it needs to go. This may sound a little "rational," but it worked for me. And, I have to say that when I got my second clean scan, mid-September, I remembered that conversation, and had an odd feeling that somehow the cancer was cooperating, had been "listening." I was also struck that the oncologist said my cancer was "pokey." Just what I had envisioned!

In September while meditating, a visualization about the cancer came to me spontaneously. I imagined a beautiful sunset, full of reds, purples, oranges, pinks; a totally gorgeous sunset. I imaged the cells, arm in arm like Dorothy and the Tin Man, Cowardly Lion, and Scarecrow from "The Wizard of Oz" dancing and skipping and running toward the beautiful sunset. As they skip and dance, I wave good-bye to them, and say "Apoptosis, Guys!" (At some point in my wandering on the web, I learned that it's the word for cell death. Cell death occurs naturally and normally in our bodies as cells die and replace themselves. One problem with cancer cells as I understand it in my non-medical way, is that they reproduce quickly, and perhaps don't die as fast as we would like.)

Now here's another really odd thing. After writing the previous paragraph, I just looked up "apoptosis" in the online dictionary, and there is an online medical dictionary that has this definition: "Programmed cell death as signalled by the nuclei in normally functioning human and animal cells when age or state of cell health and condition dictates. An active process requiring metabolic activity by the dying cell . . . . Cells that die by apoptosis do not usually elicit the inflammatory responses that are associated with necrosis, though the reasons are not clear. Cancerous cells, however, are unable to experience the normal cell transduction or apoptosis-driven natural cell death process." I didn't know that! Here I've been visualizing the cancer cells having a "normal" cell death, when it seems they don't know how! Maybe they can learn!

So, when I meditate, or see the sunset, or think about the cancer cells, I wave to them, see them dancing into this beautiful sunset, and say "Apoptosis, guys, apotosis!" Is it working? I don't know, but I hope so. And, it has the added benefit of giving me a giggle as I imagine the cancer cells dancing and skipping into the sunset. Laughing is definitely good for my soul and my body. Bye, cancer cells!

What, Me Worry?

What does a person with cancer worry about? Everything! Or, at least it seems that way. I started to call this entry "What do people with cancer worry about?" but I realized I can't speak for everyone. Well, I do know some of the things others with cancer worry about, because I read them online. Reading Leroy's blog, and comments there, reading the discussion boards of others with gallbladder or bile duct cancer (cholangiocarcinoma), I see that lots of folks are worried about their treatment not being effective, or, if in remission, that their cancer will come back. Many of us with cancer, and our friends and family members, are worrying about suffering, and about dying before our time. Those of us not currently having symptoms of our cancer worry about the symptoms returning. We worry about needing treatment.

I am definitely in that group, worrying and then trying not to worry about twinges in my abdomen, a small ache here, soreness there. Last week, I had indigestion for a few days, and it brought me back to the week before I was hospitalized last May. (I want to say now that I think, logically, that my indigestion was caused because I kept forgetting to take the Protonix prescribed by my doctors, the only drug I'm still on post surgery. Protonix is a "proton pump inhibitor" drug that inhibits the production of stomach acid, and keeps indigestion down.)

So, my indigestion story: Last May I was called to jury duty, and finally sat on a jury. At lunch on Monday, they set us loose, and I went down the street and, for lunch, bought a turkey sub which happened to come with tasty raw onions. Later, I had indigestion. Foolishly, on Tuesday I bought the same lunch, forgetting about the indigestion. Two days later, my urine changed color, and three days after that, my skin began to itch. So, my "story" about my blocked bile duct is that the final straw was caused by those raw onions! Obviously, the cancer had been growing for a while, and I don't "blame" those onions for my blocked bile duct, but the association is there for me. Once my bile duct was blocked, nothing tasted or sat quite right, and I had a rough week before going to the doctor's office. Having indigestion for two days last week reminded me of those days and brought up my fear about a repeat of the days before my hospitalization and then my surgery.

I worry about the future. I worry about teaching next fall, about staying well long enough to continue with my life, to see Lucy move into junior high school, and then high school, to see Nathaniel compete in gymnastics for many more years, to grow out the two front teeth he's lost, and develop into a young man.

I worry about getting a bad CT scan and then needing chemo. Then, I worry about the effects of the chemo, and I try not to worry, because I don't want to anticipate how my body will react. I worry about worrying, and then I try not to worry. Some days since my last clean scan, I have thought only occasionally about cancer, about having cancer, and some days I can't seem to think about anything else.

After I wrote the first part of this, I had a conversation with Patty about this Sunday's sermon. (Patty is a minister, so most weeks, she has a sermon to write for Sunday service.) Our conversation reminded me of the Serenity Prayer, one so central to Alcoholics Anonymous, and one which speaks to so many of us. I think it's what I need to remember when I worry.

God,
Grant me the Serenity to accept the things I cannot change;
The Courage to change the things I can; and
The Wisdom to know the difference.

I can't change what's happened in my body, but I can change how I feel about it. And when I worry, I can recognize that what I worry about is out of my control, and release it. I also want to remind myself that my goal since my diagnosis has been to live in the moment. When I worry, I project into the future and let go of the present moment. Serenity. Leting go of worry about the future. Being in the moment.

"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.

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.

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.

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.

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.

"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.

Bittersweet

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.

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 chemocare.com 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 clinicaltrials.gov 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.

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.