Where is the Exit from Cancer World?

Today I'm feeling better, my second good day since the last infusion, and I find myself awash in feelings. Some of them are generated from within, some in response to external events.

Last night, I woke in the night thinking about chemotherapy, side effects, cancer, lack of appetite, all of the things I struggle with now, and wondered, "Will I ever be able to think about other things in the middle of the night?" I am so tired of cancer, of being thrust without my consent or volition into this space that runs my life and leaves me exhausted. Where is the exit from Cancer World? I want to get off this roller coaster now!

Then, I think of the 32 people who died at Virgina Tech this Monday at the hands of another, who died without notice, without warning, without a chance to say good-bye to loved ones, and I wonder again. Is it better to know that death is knocking, and to have time to ponder its meaning, to begin one's good-byes, to take stock of a life lived, or to go suddenly? I am sure that the families of those who died Monday wish they had had time to say good-bye, but to be in the position of the one about to die? I don't know, and there is probably no answer. We don't get to choose. But I began this blog by asking "If you had six months or a year to live, would you want to know? How would you live during that time? What would you do?" And these events, and my approaching 11 months since diagnosis benchmark, have brought the questions back.

It seems that periodically on my journey I cycle back to these initial questions. This diagnosis of gallbladder cancer and all of the attendant miseries of treatment have left me exhausted, physically and mentally. I miss the person I was. On days like today, when I feel good, I have a clearer memory of who she is, but most of the last two weeks, I have felt frail, sick, weak and barely functional.

On Monday, I was on hold to speak to Leroy on Talk of the Nation during his appearance, but they never picked up on my call. Elizabeth Edwards called in, and so she got a bit of air time. I was glad to hear her talk briefly about her experience, and also about the politics of funding for cancer. There was a question about mortality that was dealt with briefly, and I wanted to talk about it. Why is discussion of death and dying such a taboo in our culture? Why is it so hard to get others to sit and just be with their own mortality, and that of another? Last summer I was so hungry to find others who would join me in this conversation, and slowly, they did materialize, but I was frustrated by the lack of guidance and process and support. The other topic I wanted to chime in on was about funding for research and treatment. This disease is affecting so many people, and the government is not fully supporting the work that needs to happen for breakthroughs to occur, and more people to live!

And on the show, people in remission from cancer and currently struggling with treatment, were all eager to talk. Where do we take our stories? Who will listen? In Cancer World, it seems the other residents of the moment are the most likely supportive folks, but why can't we share with the larger world the challenges of our journeys? Why is it so hard to get the media to focus on the lived experience of those of us with cancer? (This was also a topic on Monday, and even Leroy the journalist said he thinks this is an area that journalism doesn't have quite right. )

So, I'm frustrated and tired, and wanting to get my ticket punched and leave Cancer World. I want my normal life back! I want to enjoy food again, have energy to work, delight in the noises of children without getting irritated, I want my body to work the way it used to. I can't take any of it back, and I didn't ask for it, but I am really tired of it all now.

"Make No Comparisons" - Brugh Joy's Spiritual Lesson #1

Since my post of Feb. 20, I've been thinking about how I couldn't stop comparing myself to others, knowing that other people on chemo have a hard time, or an even harder time than I am. It brought to mind some spiritual lessons I keep learning over and over again. I know it's human to compare our experience to others, but it's not always that helpful.

When I was taking workshops with W. Brugh Joy, I read his book Joy's Way: A Map for the Transformational Journey. An Introduction to the Potentials for Healing with Body Energies. In the third chapter of the book, Brugh describes a cosmic experience of a woman who came to talk with him about her challenges in life. A few months earlier, she had been walking along a beach, saw an iridescent light, and heard a booming voice deliver three injunctions. She thought she was going mad. The voice said, slowly and repetitively, "'There are three injunctions for you. Pay attention to them. Make no comparisons; make no comparisons. Make no judgments; make no judgments. Delete your need to understand; delete your need to understand.'" (p. 59)

Today I want to share some of my thoughts about the first injunction: Make no comparisons. Like many spiritual lessons, I feel that I have been learning and relearning this lesson for decades. My comparing myself to others on chemotherapy is an example. I feel that the reality is that my task, my spiritual work right now, is to be present to my experience and to see what it has to teach me. I can empathize with the experience of others, but making comparisons is not useful (human, but not useful).

In his book, Brugh makes a few useful points about this injunction. He says "The tendency to live in ideas about reality isolates the mind from the true reality of the physical level . . . self is - the self is true, without question - but ideas about self may be true or false, . . . If the individual insists on holding on to ideas rather than harmonizing with what is, pain must follow." In these words, I hear him saying that believing things about ourselves, in comparison to others, isolates us from the truth about our self. I hope I'm not making this too ponderous, because it's a lesson that has really served me.

For some of us, perhaps many of us, this comparison comes in looking at our physical attributes and judging them as wanting in comparison to friends, family, societal ideals, etc. Brugh gives an example of this for himself in his book by talking about his dissatisfaction with his physical appearance for years. I was doing this in a small way when I felt overdressed for the weather on Feb. 20, and didn't like what I saw was the way others were seeing me. For much of my life, I have judged my physical body by cultural standards and found it wanting. Now that the calendar year says I will turn 60 if I live until my June birthday, I can get caught less in that, but it's still there. Last fall, I saw an old friend whom I hadn't seen in perhaps 20 years, and a mutual friend commented back to me that she thought I looked old. Well, we are the same age, but I have let my hair turn gray. I haven't completely accepted my aging body, but I do recognize that making comparisons with younger bodies accomplishes nothing. Aging is something we baby boomers don't always do gracefully, I fear.

On a spiritual level, making comparisons can mean seeing others as more spiritually evolved than we are, and feeling hopeless to achieve what someone else has achieved. For me, with my gallbladder cancer diagnosis, there is this desire not to be facing the challenges I have. I want to live a longer life, I want to see my kids grow up, I even want a less serious cancer if I have to have cancer. But none of that wishing changes the reality. Can I give up those comparisons to the life I wish I had to, to the life others have, to allow myself to benefit from the life I do have?

Toward the end of the section on this injunction, Brugh adds "It is especially important that one not interpret the injunction against making comparisons as an exhortation to live in a state of complacency, where everything that the outer mind sees is rationalized as being perfect or right, without need for change. Complacency is the way of the ignorant." I've never thought of this spiritual lesson as encouragement to accept everything the way it is, without question or concern, but I can see how it could be read that way.

Make no comparisons. Be true to oneself, and be willing to look under the rocks of consciousness to see what is hidden from awareness. Under those rocks lie the possibility of transformation, of true change that allows us to fully unfold into the person, the spiritual person, we were meant to be, we were created to be.

On another day, I'll add Brugh's thoughts - and my own - about the other two injunctions.

Today is a pretty good day for me in Chemo World, as I grade some papers, make up a midterm, and try to stay off my feet with their "hot spots." Three and a half days remaining in this cycle of chemo . . .

Simultaneous Truth

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

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

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

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

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

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

Stoic? Not me! . . . more about Feelings

A few weeks ago, Patty shared with me that several people had commented to her that I was being very stoic about my diagnosis. My first response was that they must be folks who are not reading this blog, since I'm right "out there" about the various feelings I've been having in the months since my diagnosis. And, it seems that they were indeed folks who see me in passing, dropping off the kids at school, or smiling in church.

I see myself as anything but stoic about this diagnosis of gallbladder cancer, and I feel lucky to have learned a lot about feelings and how to feel them and move through them many years before my diagnosis. Not that I have it figured out completely, but I am no longer following my early learned pattern of stuffing feelings and having them come out inappropriately every which way. (At least, I hope that's true!)

My "feelings lessons" came from many years of psychotherapy, and many years of taking and helping to run the Opening the Heart workshop (which I talked about in a post in early December (see Feeling my Anger and other Feelings). We used to give a talk on Saturday morning at the workshop that the staff labeled the "feelings talk." Here are some of the things I learned about feelings that have really helped me get through some of these intensely emotional times in recent months, and especially in the last month. (I can't believe it hasn't yet been one month since the Jan. 22 scan that revealed the cancer had spread, and that a new tumor is threatening my existence.)

These last few weeks have been hard. This past week was hard. I keep forgetting that I had general anesthesia Friday a week ago, although the stent that was placed does regularly remind me it's there. On Wednesday this past week, I felt such intense feelings of sadness and anger about having cancer, having a terminal diagnosis, worrying about whether all of my inner parts are working as they should, or the tumor is threatening their functioning. I went to work and spent most of the day with the door half shut because I would cry, work a little, and then cry some more. I didn't like being in all of those feelings, but they were there, and ignoring them would have felt awful, too. Stoic? Not me.

So what have a learned about feelings? A few things . . .

1. Feelings live in the body. They will be there, part of our human heritage, whether we like them or not.

2. We are not our feelings. When we are mad, sad, or glad, we are having feelings, but we are not the feelings. Given a chance to be expressed, and moved through, feelings will shift.

3. Feelings are neither good nor bad, but in our culture, we have distinct preferences for one set of feelings over another. That's why lots of folks talk about "bad" feelings (as in "I want to avoid bad feelings, like being angry") and "good" feelings ("I want to have happy feelings again.") No, I don't usually like feeling sad or angry. But, if my anger is directed at a behavior that is unacceptable to me, it can be a way of setting a limit. And my sad feelings may hurt my heart, but once I have let them be, they can be released, instead of stuffed into depression or anxiety.

4. When we try to shut down on one set of feelings (like sadness), we dampen our response to the world around us, and limit our range of responsiveness. We used to say at the Opening the Heart workshop that our capacity for joy increases as we allow the depths of our pain to emerge. We limit our range of response by shutting down on the emotions we don't like.

5. When feelings are "stuffed," they will emerge, sometime, somewhere, somehow. They can come out in body symptoms, in depression, in sarcasm and ways of relating that hold others at arm's length because we are afraid of being seen, really being seen. They can come out in other ways, too, but they will definitely come out.

For those of you keeping score on my commitment to grade all four sets of students papers I have home before I teach my next class, I have finished 1 2/3 sets, and have 2 1/3 to go before tomorrow is over. The week ahead is my week without chemo, but I see all of my doctors (oncologist, surgeon, and urologist) this Wednesday, on Valentine's Day. (Will they hand out chocolate hearts?) On Friday, I go in for another infusion of Oxaliplatin, and begin two weeks of the Xeloda pills. But today, no chemo! That feels good.

* The images at the beginning of this post are from Learning and Teaching Scotland, available free if used for educational purposes.

Living with the contradictions of chemotherapy

It's now Day 10 of my chemo cycle, and I wanted to write more about being on chemo. If you, the reader, have ever been on chemo, this may not be that interesting, but I know lots of folks reading this blog aren't on it now, never have been, and hopefully never will need to be, so I thought my observations could describe my experience more concretely,and give a sense of the experience.

First, every chemo regimen is different. Even for the few of us with gallbladder cancer, doctors will frequently prescribe a different combination of drugs. And, sometimes we start with one regimen and, either it doesn't work to slow/kill the tumor, or the side effects become too great, and we have to stop and start something different.

I am on a 21-day chemo cycle. On Day 1, I am infused with Oxaliplatin. That same day, I begin taking pills of Xeloda, within half an hour of eating breakfast and dinner. I'll take those pills for two weeks, and then I have a week with no chemo, time for the "good cells" to rest and recuperate before we begin the cycle all over again. And I have taken my pills as scheduled, even when I didn't feel much like eating, but knew that I needed to eat breakfast or dinner so that I could take the chemo pills on a full stomach, on schedule. Interestingly, after I first drafted this post, I read in today's Boston Globe that taking pills at home is changing the nature of cancer treatment, and the doctors are trying to figure out how to ensure that all patients take all of the medicine prescribed.

The job of the chemotherapy drugs is to kill cancer cells (because, remember, they don't seem to "know how" to die all by themselves, like regular cells - apoptosis!) Chemo drugs are strong and tend to have side effects, but not everyone gets all of the side effects.

So here's the contradiction of my chemo:

1. I can't drink cold beverages or eat cold food, or expose my body to cold air for 2-7 days (or maybe longer) after the Oxaliplatin infusion. Simultaneously, I cannot get my hands or feet in hot water (no washing dishes in wash water, not even with rubber gloves, which leaves the hands too hot). The "moderation" of temperature required by this regimen reminds me of how my father likes to encourage moderation in all things (all my life, he's encouraged me to remember this).

2. Either of the drugs may make me nauseous, the Oxaliplatin especially right after the infusion, and the Xeloda anytime. Or not. So, I continue to take the compazine - mostly at night - if I'm feeling nauseous, but if I take it during the day, it makes me sleepy and fuzzy brained. And, I'm happy to say (knock wood) that so far, my nausea has been mild, and has been the only clear GI tract effect of the chemo. And I just bought some "sea bands," at my local drugstore. They used acupuncture/acupressure concepts, and fit tightly on my wrist with a small hard bead pressing in on the naseau "point" in my wrists. So far, so good today. (The photos at the top are from the seabands website.)

3. There is no positive correlation between having side effects and whether or not the drug is working. The drugs can work without side effects (and this is the option I'm envisioning!)

4. In order not to develop two fairly common side effects from the Xeloda, the time required for my personal hygiene has just grown by a lot. First, I'm supposed to cream my hands and feet several times daily to keep them moist. At the hospital, they even gave me a free sample of "Udderly Smooth," which turns out to be a lovely cream both for cow udders and people's hands and feet. This extra care is to prevent "hand-foot syndrome," where the skin breaks out in a rash, blisters, etc., and which can be pretty painful.

5. The other common side effect from Xeloda is sore mouth - stomatitis. So, I'm not only brushing my teeth twice a day, as usual, I'm also rinsing with baking soda dissolved in water a few times each day (keeps the bacteria count in our mouths down). And I'm flossing (almost) daily, just as the dentist always recommends! I guess I'm less likely to develop the sores if my mouth is extra clean. Today I notice that the roof of my mouth feels tender, so I'm trying to eat food that won't scrape the insides of my mouth. I'm hoping for great success at avoiding this side effect, but I figure that there just aren't any guarantees.

A quick visit to my world of contradictions in chemotherapy! Up is down, cold is hot, and side effects can stay home . . .

Why Keep Working?

No one has actually asked me this question, although perhaps folks have wondered to themselves, or asked each other. With my serious diagnosis of gallbladder cancer, stage IV, and now the new tumor and chemotherapy, why keep working? My good friend Bev was talking about my diagnosis with some friends of hers who are around "our age" (60 or pushing thereabouts), and they wondered why I wasn't traveling the world, or doing something similarly exotic. Instead, I had to get "exotic" cancer!

There are the children and their schooling, although they could learn anywhere. There are a variety of answers to this question, and I'm sure I'm not going to think of all of them today. But the question, and my answers, have been in my mind, and I want to share them. I think my reasons carry varied weight at different moments. And I want to be clear that if I am too sick to work, I will certainly stop. I'm not a martyr, and folks at my work have been wonderfully supportive of me through my health challenges over the last 8 months and 1 week.

Why keep working? In no particular order . . .

*** Financial reasons. My income is a significant source of income for our family, and, almost as important, my work is the place providing my health insurance, which is wonderfully comprehensive. I think about someone struggling with a diagnosis like mine, and having financial problems and no health insurance to pay for doctor visits, medical examinations, chemotherapy, tests, all of the things that have become part of my life in these months. I wouldn't choose voluntarily to put my family in that position if I could help it. If I have to stop working, we'll figure it out, but . . . money and health insurance are important.

***Because I can. As long as I'm well enough to work, why not? I love what I do, have worked hard to get good at it, and appreciate the relationships I form with students, colleagues, and the larger university community, and I also appreciate the opportunity for intellectual stimulation.

***Generative expression. This phrase comes from psychoanalyst Erik Erikson, who envisioned eight stages over the life cycle, and the 7th is "generativity versus stagnation." He saw this as the main stage of mature adulthood, where (as I remember) one has the opportunity to be productive, as by using the education gained in childhood and young adulthood to develop a profession or career, and be a useful member of society. I'm getting a little long-winded here (me?), but this is the word that keeps coming to me. I want to be useful, I want to be productive, I want to have the normalcy that comes from continuing to work. I have no illusions about being indispensable; I know that I'm not. But, I am useful, I do know a lot about how my job works, and I value the opportunity to continue to share that.

***Something to focus on besides my body. I don't want to be so obsessed with every twinge and tweak in my body that I go nutty. With work to think about, I am taken out of my self- focus, and given other things to think about. Yes, my health is important, and I am doing my best to balance all of this, but work is part of the balance for me. Take it away, and I may become too focused on bodily functions and processes! And yes, I like to think that I'll know when the time comes to leave work behind and focus more exclusively on intimate relationships and my spiritual self, and to leave work behind. I don't think that time is now (and I recognize that my body could have a different agenda). Expectancy, and hope, not expectations.

A postscript to all of this is that I had a good day today. By late afternoon, I commented to Patty that I'm feeling good (and almost afraid to say so, in that superstitious way we humans can have). I feel more myself, my energy has been strong, and I feel more like the person I was before I began chemo. And, I confess, I stayed home to work today instead of going to the city, but I don't think it's just about that. I seem to be managing the nausea I occasionally feel, I'm getting used to "pins and needles" (and they are slowly subsiding), and I'm taking care of mouth, hands and feet against possible side effects (more on that in another post).

Today was a good day. I celebrate that. Tomorrow I return to the city to teach my classes, and I celebrate that as well.

Thanks to all of you who have been posting and sending me hope, love, support, and all sorts of good things. I so value your sharing this journey with me. Thank you.

Bad News %>(

My concerns on Monday, looking at the scans, were well founded. I have a "recurrence" - a tumor - in the area where my gallbladder used to be, and where my cancerous bile duct was left. I think it's big - 4.5 cm x 3.7 - but the doctors don't seem to be particularly worried about its size. The really bad thing about this bad news is that the tumor is encroaching on my liver, my colon and my ureter - the tube that carries urine from the kidney. So, if it keeps growing, it could have a very bad impact on the functioning of those organs. I met with both the oncologist, Dr. J, and the surgeon, Dr. M, today, and got lots of information about what to watch out for. And, I've made a decision to begin chemotherapy.

I first got a preview of this tumor when Dr. M called me Monday afternoon to describe what he saw on the scan. He's pretty good at reading the scan, and saw the tumor, and described his concern. Then yesterday his assistant faxed over the radiologist's report on the reading, including details about the tumor, and my bloodwork, which isn't good for my liver, but Dr. J didn't think the numbers were that bad, compared to what he's seen. So, I've had two days to digest this information - and to get really, really upset about it. Tonight I'm a little calmer because information and a plan of action helps me feel less out of control.

While my conference with Dr. E at Dana Farber made me think about changing docs, for the moment I've pretty much decided to go with what's familiar, and stay at Beth Israel Hospital for my treatment. I have an appointment to begin treatment this Friday morning. (Yes, that's two days away.) I met the treatment nurse, Linda, and the nurse oncology coordinator, Sue, today, and had a "tour" of the room where they do the infusions. Came home with an armload of information, including lots of warnings about the side effects or potential side effects. The two drugs I'm planning to take (unless I change my mind tomorrow) are Xeloda (capecitabine), taken orally as a pill twice a day, and Oxaliplatin, taken by infusion once in three weeks.

As I anticipate this next phase of dealing with my disease, I would ask those of you following my journey to hold me in prayer and love and light, and to see me tolerating the chemo well. No side effects - few side effects - lots of good days still. I have apprehension, but the intrusion of this tumor makes entering chemo easier on balance. I hope to hold my expectancy and hope for the future.

Second Opinion

This is a quick update on yesterday's appointment for a second opinion at Dana Farber Cancer Institute. I've received one concerned phone call, and Patty a worried email about the appointment because I said, in my post about Tia, that I'd write more later. I'm fine. The new oncologist, Dr. E, agrees that I have gallbladder cancer (I didn't expect a different result), and he gave me lots of information, answered many questions, and gave me much to think about. Last night and today I felt as if I my brain cells, like little cogs, were whirring and spinning, processing all of the information. And, frankly, last night I was overwhelmed by the day, having met Tia in the morning, and then spending three and a half hours on site at Dana Farber, including almost an hour and a half with the doctor.

Another detail: I have my next CT scan on Monday, and see my current oncologist, Dr. J, and my surgeon, Dr. M, next Wednesday. So I'm really in the middle of this month's process. With that disclaimer, here are some details. . . .

Dr E agrees that he would stage my cancer as Stage IV. I thought I'd heard that from my other doctors last summer, but then when I have been doing so well, I thought I'd misremembered or misunderstood. He also agrees that my cancer is slow growing, and that my progress has been surprising. His nurse practitioner called my cancer cells "indolent," a fancier word than "pokey," but meaning the same thing. Slow growing!

After examining the latest "spot" in my abdomen and looking at it on the November scan, their radiologist and Dr E agree that it's likely cancer, another implant. He gave me lots of options to consider with it, though. Have it surgically removed (but it's in the abdominal wall, which is more likely to have consequences for those stomach muscles afterward), have radiation, have chemo, do nothing. Part of the "do nothing" approach is to take the time to look into immunology treatment for gallbladder cancer. Why keep the "spot" if I'm considering immunotherapy? Sometimes they need an existing, live tumor to harvest cancer cells from the person being treated. Also, if I begin chemo and have a tumor that can be measured, it's a way of telling whether or not my cancer responds to that particular chemo. Otherwise, it's all guesswork.

There are efforts at developing immunotherapy for various cancers in the U.S. and across the globe. However, since gallbladder cancer is so rare - or exotic - there are probably no existing trials, but it's worth seeing if someone would want to do one. And, Dr. E said he thinks I'd be a great candidate for immunotherapy, because I'm asymptomatic and have slow growing cancer. After I've done some more research about the immunotherapy, and have more time, I'll post about it, including some links.

We also talked about chemotherapy, various reasons to begin it, and different levels - mild chemo, moderate, aggressive. No one had talked with me about that, and about considering my options and how to think about choosing. That was very helpful, and gives me good background as I meet with my doctors in the week ahead.

That's the quick version. I got the larger conversation about gallbladder cancer that I wanted when I scheduled this appointment, and now I have a lot to think about.

Combating Cancer Loneliness - Meeting Tia!

As you can see from this photo, Tia and I met today at Dana Farber Cancer Institute - in the cafeteria, actually! I wrote about Tia when I wrote about the loneliness of having a rare cancer. And, for the record, Tia's daughter Liana, who was also present at our meeting, says it's not "rare" cancer, it's "exotic" cancer! Patty was there, too, and the four of us talked about scans and kids and cancer. Tia got her results this morning, and the news was good; her latest met hasn't changed in size. My appointment, a second opinion with an oncologist at Dana Farber, was in the afternoon, and I'll write more about it later.

Like ambassadors from Cancer World: those diagnosed with gallladder cancer, we brought small gifts to each other. Tia had a wonderful photo of her son's wedding last weekend in a beautiful outdoor site in Hawaii. We gave her two notecards, each made of art work by our kids. We talked about doctors and scans and living with gallbladder cancer.

So, now I can say that I have actually met someone else with gallbladder cancer! We have in common slow-growing cancer (Tia is 17 months post diagnosis), a fierce will to live, and a hope and faith in the future. Tia is a comrade soul, and I feel less lonely knowing her.

Somehow I feel that this post should be longer, but the beauty of our meeting for me was that it felt like old friends getting back together after a long time, even though we had never met before. The conversation flowed freely, and was mostly about ordinary life, connections in place and time, and a developing friendship. I guess that's all I need to say!

Another Damned Spot?

Yes, I think I feel another damned spot in my abdomen, this one a little deeper and a little larger, and also close to my incision. I actually felt this in November, before the other "spot" was removed, but I thought perhaps it was scar tissue. Now I can feel that it's more rounded than it was, that it's grown a bit, and I can see it on the scans from November when I look for it. Curses!

I called the surgeon, Dr. M, this week after "spotting" it on the scan, and he said that it could be another "implant" and that it would be more difficult to treat than the first since it's deeper. (It seems to be in the abdominal wall.) As I mentioned in my December 30 post, my CA 19-9 numbers have been rising, and I've known that this next scan would be important to determine whether or not to start "treatment" (read chemotherapy) besides "watchful waiting." Dr. M mentioned this next scan, and said that if there is sign of spread in my abdomen along with this "spot" and rising scores, treatment will probably be indicated. (And this is what the oncologist, Dr. J, said after the last CA 19-9 numbers.) In an amazing moment of putting a positive spin on my disappointing discovery, Dr. M said that if this "spot" is another small cancer tumor, and I begin chemotherapy, I'll be able to tell partly if the chemo is working by feeling whether there's a change in that spot. He is amazing! And, I suppose he's right!

Some folks asked me in person after my first spot was removed on December 4 if that was a metatasis, and I said no. At least as I understand it, that spot (and perhaps this one) was an "implant," which was a cell or collection of cells that escaped as the surgeons pulled out my sick gallbladder through the incision. As Dr. M described it, gallbladder cancer is particularly prone to escape and implant in or around the incision (and some cancers aren't prone to this; he mentioned colon cancer). So, the cell or collection of cells begins to grow, quickly or slowly, and creates a tumor. That's what my spot was. It's not a metatasis because it's not made of cells that have "hitch hiked" through the lymph or blood system, but rather because the cells were left where they settled in and grew. That's my understanding of the difference, at least.

These next two weeks are full of medical appointments, a scan, and quite likely, some decisions about how to proceed. I also begin teaching a new semester on this coming Tuesday. In the moment, I am holding an attitude of hope, of expectancy that I can handle whatever the news is, and whatever treatment follows.

When I Thought I Would Die Quickly, I . . .

Last May, when I was diagnosed with gallbladder cancer, I was told that most people with this diagnosis lived two to six months following diagnosis. I assumed that the doctors knew what they were talking about, and that I needed to get my affairs in order, and began to seriously take on my mortality. I also had a strong intuitive hit (that I've written about before) that I was not to assume that I would survive this cancer, that I was meant to fully engage my mortality. Then, the weeks passed, I regained my strength, recovered from my surgery, and felt good. "Confounding my doctors," I would say to folks who inquired about my apparent health in the weeks and months following my diagnosis.

Last month, I passed seven months following diagnosis, and found myself remembering some of things I felt about the mundane details of life in the weeks following my diagnosis.

When I thought I would die quickly, I

* resented paying my bills. Who cared that I had had my teeth cleaned in the month before my diagnosis, and would die with clean teeth? Or not? (I've had my teeth cleaned twice again since then, I'm glad to say.) And I felt this despite knowing that if I died with debts, my "estate" (whatever money or property I had at death) would, in fact, pay those debts. It was just a feeling, but I just didn't want to pay those bills for services I incurrred when I thought I'd be living for many decades. And, I should add, I did pay those bills, I just resented them.

* wanted to tell everyone that I had terminal cancer. I was still dealing with my diagnosis, and I wanted everyone to know and feel sorry for me. Except that this feeling was only a part of me, and I mostly didn't just blurt it out to everyone. The feeling seemed to come from some place that believed if I told enough people, and they believed me, I could believe it.

* kept saying that if the doctors hadn't surgically removed my gallbladder and other tissue so that the pathologist could test it, I wouldn't believe the diagnosis. Now, I know that denial is a frequent normal response of humans to information we don't like and don't want to believe, but I still remember how strong this feeling was. How could I be so sick if I felt so good? And I thought a lot about the surgery, because I learned from Dr. M, the surgeon, that if they had known I had cancer, they wouldn't have operated, and would instead have begun chemo and put in stents to relieve the buildup of bile.

* wept frequently. Life felt very precious, and I didn't want to leave it. Still don't.

* wanted to talk about death and dying, and our fear of it. It's hard to get people to talk with you about dying, I discovered. In general, those most willing to, because of their training and temperaments, perhaps, were our friends in ministry or training for ministry. I was grateful for those friends, because they would listen to me talk about the pain of receiving a terminal diagnosis, and talk about how I was feeling, with the weight of the terminal diagnosis in my heart and my soul. And a few of my very best friends stepped into this listening space with amazing grace and sweetness. I was frustrated when others acted as if I had just received any other serious, but not life-threatening, diagnosis. I wanted to shake them. "Can't you see what's happening to me? I want to talk about it!"

* had hope for the future, despite taking on my mortality, but still didn't imagine creating this blog in August, teaching through the fall semester, and sitting in my most comfortable chair on this January evening feeling like myself. Mostly, anyway, like myself, just changed by these months of living with this life changing diagnosis.

A Medical Update - My Gallbladder Cancer

I haven't written much about my medical state since the "spot" was removed, and I've been waiting to have a little more information before posting. I also know that some of you, my good friends and family who read this regularly, keep track of my scheduled doctor appointments, so I wanted to describe what's up for January.

First, I'm having a "second opinion" (I think of it more as a consultation) at Dana Farber Cancer Institute in Boston on Friday, January 19. I think of it as a consultation because I don't doubt the diagnosis, although I know that pathologists can be wrong. Mostly, I want to talk with an oncologist who has worked more with gallbladder cancer, just to get a sense of his/her medical opinion about the course of my disease. Patty and I contacted a doctor friend who contacted a doctor colleague at Dana Farber earlier this month asking who is "expert" in this cancer there, or in the U.S. His response was that no one there, or in this country, is expert in gallbladder cancer. (Raising the question several friends have asked: "Is there an expert in gallbladder cancer outside the U.S? I don't have an answer.) Anyway, I've already had all of my records sent to them, and if they had a cancellation in the meantime, I may go for the appointment sooner.

Second, my next CT scan will be Monday, Jan. 22, with my oncologist appointment two days later, on Jan. 24. (Unfortunately for me, with post-scan anxiety, that's the soonest the new oncologist, Dr. J, is willing to see me post-scan.) At that appointment, we'll look at the whole picture and either he'll recommend that we begin treatment, or that we continue "watchful waiting." Of course, those of you who know me know that I'll be coming home that day with the scans, which I'll study on my computer to see what I can see, before the radiologist issues a report.

Third, we have been tracking my tumor marker (through a blood test called CA 19-9) more closely in the weeks since my last scan, largely because of the "spot" and the discovery that it was cancer. Some information about this blood test:
1. Not everyone with gallbladder cancer has this blood test register. Tia told me that her current reading is "3" despite her current mets, and the doctor simply said that the test is meaningless for her.
2. The numbers can get very high when someone is really sick. My numbers were all below 100 before November, I know of folks with readings in the 3,000-4,000 range who are not symptomatic, but have mets, and I have read of folks with readings in the 10,000 range who are very sick.
3. Anything below 37 is considered "normal."
4. My readings have been going up, but not awfully. Here they are:
Nov. 22 - 137
Dec. 4 - 182
Dec. 12 - 190
Dec. 27 - 212
When the oncologist called yesterday with the blood test results, he talked with Patty and I missed him on my cell phone, but he apparently pointed out that this last was about a 10% increase. I personally was hoping my numbers would go down following the removal of the "spot," but that doesn't seem to be happening.

What's next? That depends on the scan on Jan. 22, and how I feel. If the scan indicates visible spread, and my CA 19-9 numbers continue to climb, I will probably begin treatment. If the scan is clean once again, I continue to feel good, and the CA19-9 numbers haven't changed much, then I probably won't begin treatment. There are obviously other possibilities, but we can see what things look like on my next appointment.

On the discussion boards, I've been reading in the last seven months about others with this disease who go downhill rapidly. I see more clearly now why my doctors were apprehensive about our trip to the southwest last summer, three weeks after my surgery and diagnosis. Since gallbladder cancer frequently doesn't respond to chemo at all, I also see why my self-report on how I feel is a real indicator of what should be done medically. Knowing that makes me a little anxious when I don't feel good; then I have to remind myself that I had days when I just didn't feel good before my diagnosis of gallbladder cancer! But it also makes me anxious when I have any digestive drama, and in the last few weeks, I've had a weird sensation in my middle a handful of times that feels like something being constrained, moving through a narrow opening. It's different from indigestion, and it passes pretty quickly, but it makes me worry about my bypass, about the cancer spreading in some way that would interfere with the ability of my GI tract to do its job.

Aside from that anxiety, I am feeling good, with my energy consistent, my body feeling strong, and my spirits generally good. I have two and a half weeks before I'm back on campus (although I have preparation to do for the new semester), and I hope to do some fun, crafty things and to relax a little over that time.

Combating the Loneliness of a Rare Cancer

When I was first diagnosed with gallbladder cancer last May and began researching the disease, I was stunned by how rare it is. I mentioned the statistics in an earlier post, but depending on whether or not bile duct cancer is included, there will be something between 3,000 and 8,700 cases of gallbladder cancer in the U.S. this year. Seeing those statistics, I realized that not only did I not know anyone, ever, who had had gallbladder cancer, or who even knew of someone, sometime, who had had gallbladder cancer, but that I am unlikely to meet anyone who has the disease. It turns out that I was wrong on the first count, as I learned recently that a friend's mother died from gallbladder cancer in the 1970s. However, the second point will probably be true unless I arrange to connect with one of my long-distance friends with gallbladder cancer in the months ahead.

I feel the loneliness of the diagnosis when I go onto a cancer website, and my cancer isn't listed. Anywhere. Well, somewhere. At the "big" sites, I can find it. The American Cancer Society does have information, as does the National Cancer Institute. There is a Rare Cancer Alliance, apparently formed by a woman who wanted to provide a central source of information and connection for rare cancers, but it combines bile duct and gallbladder cancer, and lists a total of 18 posts on the discussion board over the year 2006.

How do I counteract the loneliness? One thing is by writing this blog; I have told more than one person over past months that writing here is therapeutic, that it helps me process what's happening inside my body and inside my psyche and spirit. Hearing from friends and strangers that they've read my blog, and hearing them relate their responses and their experiences is a powerful antidote to my loneliness.

Just today, I had an email from a woman whose mother was just diagnosed with gallbladder cancer. She had found my blog, and some of the information I provided, and linked to. Her mother is stage 4 and not doing well, but I was glad she could find information on my site.

Another important antidote has been to connect with others who have gallbladder cancer. I haven't personally met anyone else with GBC - yet! - but I hope to. And even if we don't meet in person, I've made contact through the discussion boards (listed on the side links of the blog) at Johns Hopkins, Cholangiocarcinoma.org, and Cancer Compass. Those three discussion boards are essentially it for connection with others with the disease, or who have loved ones with the disease. In addition to the discussion boards, I've made contact by email with a few other folks with GBC - Woody (who has posted a comment on several occasions here), Melissa (who sent me an email that I wrote a post on - see November 8), and, most recently, Tia, from Hawaii.

Tia got my email address from Woody, who is compiling statistical information about those of us with GBC, and she wrote me with her story and then called me on the phone a week before Christmas. Tia is 17 months post diagnosis, and has been feeling good and doing well following surgery, radiation, and chemotherapy with 5FU. Now, she has some mets, including one under her clavicle that's been biopsied. She and her family are searching the internet for promising clinical trials or [alternative] treatments, something that might actually offer a cure. She's finding that her quest may take her outside the U.S. to a country where this cancer is not uncommon. That's Tia's story, briefly, but the exciting part for me was that we connected, about the disease, and surviving, and thriving, and having the rare cancer called gallbladder cancer. And, despite living in Hawaii, she has an oncologist at Dana Farber Cancer Institute in Boston, and we both have an appointment on Jan. 19 there. Perhaps we can meet!

On Dec. 23, the day after my gloomy post "Today, I don't want to know," Tia called me, to say that she knows how I feel. And she does. Ironically, she'd had an attack of sadness about the possibility of no more Christmases the same day I did. How affirming to have someone in my situation call to say she understands! (And I want to add that I sent her a draft of this post, so that she could edit and give the okay for the information about her life that I've provided here.)

What's most important about all of this? Connecting. I feel that all of us find healing in connection, in bringing our spirits, our souls into connection with the soul of another. In life, it can happen through a glance, a kind word, through true friendship where we are willing to be vulnerable with another, through faithfulness in relationship where we stay even when things are tough. And it can happen through the new technology, like the world wide web, and blogs, and the ability to find someone else who is struggling with issues like ours. Healing of the spirit can happen through connection, and I'm happy to have some of my loneliness alleviated by connecting with others affected by this rare cancer.

Today, I Don't Want to Know

Warning: This is not a warm and fuzzy holiday posting, but rather a grim and sad one. So, don't read on just now if you are not in the mood.

Today, I don't want to know that I have been diagnosed with terminal cancer. I began this blog last August by saying:

If you had only six months or a year to live, would you want to know? What would you do with the information? Would it make a difference in how you lived your life?

My answer then, and in the days since I framed the question, has been "Yes. I would want to know, I'm glad I do know." As the months have unfolded and I have felt well, returned to work, not gotten quickly and intensely ill, continued to recover from the major surgery of last May, and had other experiences, the immediacy of my diagnosis has somewhat faded. And while all of this has happened, I haven't had a day when I thought that I wouldn't want to know. I've seen it all as an opportunity to live more fully, and to be in the moment, savoring the life I have.

Today, however, I wish I didn't know. Suddenly, with Christmas three days away, I just don't want to be thinking that this could be my last Christmas, and have that added weight to the holidays. I loved Christmas as a child, and there is much about it that I continue to love. But with the passing of years, it has come to carry a lot of emotional baggage. To that baggage, I really don't want to add an awareness of my mortality, thank you very much.

Two weekends ago, I baked cookies for two days with good friends who came to roll, and dust, and shape the cookies I like to make just for Christmas. And in baking, we talked, sometimes about heavy and serious things, sometimes about light and fun things. One conversation, with my friend Judy, who is a United Church of Christ minister like Patty, was about the difference between getting a terminal diagnosis (like gallbladder cancer) and getting a serious diagnosis (like a cancer that's more treatable and has a good success rate from treatment). I don't want to be comparing degrees of "badness" for respective diagnoses with anyone, but I can feel the difference of a diagnosis that one expects to recover from, and one where nothing short of a miracle would prolong one's life. (That's me, and I am definitely in the market for one of those miracles.) And perhaps I can most accurately say that I know I would feel different if diagnosed with a treatable illness. The terminal diagnosis makes me wonder if I will be here next Christmas, or, if I am alive, I'll be well enough to bake cookies again for a weekend.

I wish I didn't have cancer. I wish it weren't gallbladder cancer, with its poor prognosis. I wish I could get treated and expect to go on living my life. I wish I didn't know that the cancer is in my body, and that this could just be my last Christmas. I wish I could just enjoy the anticipation and laughter of my children as Christmas approaches, and not worry about next year. Today, I don't want to know.

Vitamin D, UV-B Sunlight and Gallbladder Cancer

While wandering about the internet, I discovered an article about sunshine, UV-B sunlight in particular, Vitamin D, and cancer. Not just gallbladder cancer, but a number of cancers, especially those of the gastro-intestinal tract. Having found the one article, I have found some other articles on this topic. I've thought of myself as pretty well informed on health issues generally, but I don't remember reading any of this in my pre-cancer days.

Entitled "Solar ultraviolet-B exposure and cancer incidence and mortality in the United States, 1993–2002," the full text of the article that got me thinking about this is available online for those who want more information. The gist of this research, which uses data of 3 million cancer diagnoses from 1998 to 2002, and 3 million cancer deaths from 1993 to 2002, is that some cancers are more prevalent in areas of the country where people are less likely to have exposure to UV-B sunshine, and thus less likely to have good levels of Vitamin D. And, most important to me, this is true for women (but not necessarily men) with gallbladder cancer. If you are reading this and affected by another cancer, it's worth reading the long list of cancers in the study that the authors describe as impacted by lack of Vitamin D.

Let me try to say this more clearly (because goodness knows, the article has lots of technical medical language in it). Because parts of the U.S. are far enough north that even if we are outside during the winter months, we do not get enough UV-B sunlight to make the Vitamin D we need to have sufficient amount in our bodies. In another article this week, I read that the minimum daily requirement for Vitamin D was established by the government as a minimum to prevent rickets (early 1900s), and certainly it did not anticipate that many of us would spend our days indoors as well as be living too far north to benefit from the sunshine.

You may be wondering how all of this fits into the dermatologists' campaign over the last years to see that all of us wear our sunscreen outside. I'm not a doctor (as most of you reading this know), but I have heard even dermatologists say publicly recently that we should all be getting about 20 minutes of sunlight on our unprotected skin each day to ensure adequate amounts of Vitamin D in our bodies. So, I think that even with their worry about melanoma, they are recognizing that getting some sunlight is valuable. But after that 20 minutes, they want us to put the sunscreen on and restrict our exposure to the intense mid-day sun.

So, back to this study. Another aspect to this study is that while we can take Vitamin D supplements, there is actually some evidence that getting the sunshine, UV-B rays particularly, and making our own Vitamin D, is actually preferable to the supplements.

It seems that gallbladder cancer in women is statistically linked to insufficient sunlight exposure. As a result, I have purchased a "sun lamp" with UV-B rays, and when it arrives next week, I'm ready to use it the prescribed 20 minutes each day. Maybe it will slow the progression of the disease (which the article suggests sufficient UV-B exposure, and Vitamin D might), and maybe it won't. But I'll at least have a better mood through the dark winter days of Massachusetts, and maybe I'll even look a little tanned, instead of pasty! And, thinking back to the summer months immediately following my diagnosis, I am remembering how much time I spent outside, in the sun, wearing sunscreen, but not being obsessive about it, since I was no longer worried about skin cancer as much as I was about surviving gallbladder cancer for as long as possible. So, maybe the summer sunlight slowed the progression of the disease, and maybe my sunlamp will help now, too.

With this posting, I am thinking it's time to put a "This is not medical advice" warning on my blog. First, I have to figure out how! Thanks for reading.

Expectations

Expectations are dangerous things. We can have "good" expectations, or more accurately, expectations of good things to happen . . . "I'm looking forward to Christmas, it's going to be wonderful!" (words either of my children could speak at any moment in the next two weeks), and expectations of bad things to happen . . . "I'm worried that that pesky, damn spot of cancer in my abdomen was a metastasis, or can cause a metatasis because it connected to my lymph or blood system." (The last part is according to the pathology report that was available this past Friday, and these are thoughts I've been having a lot over the last few days.)

Why are either of these dangerous? While anticipation and yearning can be powerful, intense feelings, and windows to some of our internal process about an upcoming event, deciding how that event is likely to unfold is dangerous. I learned some of this perspective years ago when I took a weekend workshop with two women who then referred to their work as "The Love Project." They have since changed their name to Teleos Institute, and like most ongoing projects out in the world, they have a website.

"Have no expectations, but rather abundant expectancy" was one of the original "Love Principles" articulated by Arleen Lorrance of the then "Love Project." A full list of the principles can be found at their website, and I'm including them here as well. While they are essentially simple, they can also be unpacked to provide useful principles for changing the way we think about ourselves, our lives, and those we encounter on our life journey.

Receive all people as beautiful exactly as they are.

Be the change you want to see happen, instead of trying to change anyone else.

Create your own reality consciously.

Provide others with opportunities to give.

Have no expectations, but rather abundant expectancy.

Problems are opportunities.


As I thought about writing about expectations, expectancy, and the ideas of Diane K. Pike and Arleen Lorrance of Teleos Institute, I reflected on the number of times in the months since I began this blog that I have discussed and described some workshop I've attended in the past. So, I want to name that yes, I did attend a lot of workshops, that I saw them as part of my spiritual journey, and now I'm happy to name one or more pieces that I got from doing the work I did. At least the learning isn't all lost to time!

So, about my expectations. Okay, so I remember the principle, but I don't always live it fully, I admit. As time passed with my clean scans, I expected to feel delighted and relieved to reach the six month mark without needing treatment and without experiencing additional effects of the gallbladder cancer. Instead, I admit I've spent the last four weeks, since the week before my November 17 scan, worried. (I just counted the weeks, to see if my sense was indeed correct, that's it's been that long.) So, the six month anniversary of my diagnosis has come and gone, and I haven't been feeling lighthearted and pleased, but rather anxious and fearful.

How can I shift from my anxiety to a place of expectancy, or openness to the possibility of "good" things, and a trust that if "bad" things happen, I can handle them? Just asking the question helps me begin to think about it all differently. If I am committed to living fully in the time I have (and I am), then living in fear and anxiety is not fulfilling my deep desire. Feeling that desire, that yearning, and withdrawing my expectations of outcome and timing can be a good place to start. Don't misunderstand, it's not that I don't want to live many, many more years. It's just that I don't want to miss the moment, the present, the now of my experience because I'm worrying about what's going to happen next month, or in six months, or a year, or five years. I think that expectancy is about living in the now, and not in the unknown future. That's what I want, to be here now.

That damn spot was Cancerous!

Today, I talked with the sugeon, Dr. M, who had talked this morning with the pathologist, although the written report has not yet been issued. The damn, pesky, annoying - but now gone! - spot was galllbladder cancer!

My intuition was so strong that it was cancerous, I didn't feel surprised. But, the news is so powerfully bad, I felt kicked in the stomach, knowing for certain that it had been a cancer nodule growing in my abdomen, under my skin, available to be touched. I hate this cancer! Cancer sucks!

Since talking with the doctor, I've wondered if I need to worry about whether or not I have to worry about the cancer spreading from where the "spot"/nodule was located. I didn't think to ask the surgeon. Probably next week, I'll talk with the oncologist, and see what he makes of the pathology report.

I am relieved, immensely relieved, that the spot is out of my body. I'm glad I trusted my intuition about it - assertiveness is valuable for cancer patients! - and I'm glad it's gone. But I really wish I had been wrong, and I wish it weren't cancerous.

Feeling my anger and other feelings . . .

Over the past two and a half weeks, as I anticipated first the CT scan and its results, and then the removal of the pesky spot, I have been awash in feelings. Most of them have not been fun to be awash in, and I am looking forward to the possibility of other feelings coming up now that the "pesky spot" has been removed.

In the 1980s, I attended, and then helped to lead, a series of psycho-spiritual workshops called "Opening the Heart." We did many exercises at those workshops to help participants feel and release "stuck" feelings, feelings left over from past experiences, but not fully felt and released from the body. As I have been awash in my anger, sadness, and anxiety about my gallbladder cancer and the tests and appointments of recent weeks, I have been grateful for what I learned at Spring Hill (which was the name of the organization running the workshops in the 80s and 90s, but which has since closed). The Opening the Heart workshops were created by Robert and Judith Gass, and are sometimes still offered at the Omega Institute in New York.

That's the background for how I've tried to handle the anxiety, fear, anger, and sadness that have spent too much time in my body over these past few weeks. First, I felt a lot of anxiety about having the CT scan and learning whether or not there was sign of the spread of the cancer, meeting a new oncologist, and worrying about how much longer I'll live, and when the cancer will begin to spread. And I've been worried about the now-removed, annoying, changing, spot in my abdomen. I've written about the anxiety before in this blog (see September 15 especially). But some of these other feelings have gained a new intensity around the cancer diagnosis during the last few weeks.

I have been feeling anger, red hot anger at the cancer. Last Friday I was baking cookies for the church Christmas fair, and I realized I was feeling really mad at the cancer. Mad because I love baking cookies, and I want to be baking cookies for many years to come. If you don't know me, and don't know how much I love to bake, this probably sounds really strange, but it's true. Last summer after my diagnosis, my friend Maria kept asking me if I was mad yet, and I kept replying that I didn't see that there was anyone to get mad at. Well, now I'm mad at the cancer, as illogical as that might be. But then feelings aren't known for their logic, are they? . . .

I have also been feeling sadness about the cancer, sadness about some of the things I'm mad and anxious about. How dare the cancer threaten to end my life prematurely? I don't want to die now, to stop baking cookies, to stop teaching, to stop loving and parenting my kids and loving Patty and my friends. I am not ready to die! I resent how this disease has sabotaged my life, and changed the focus of how I live. I want my life back! Well, I guess I'm still more mad than sad, although I know the sadness is there, too.

Feelings, feelings about the cancer, feelings of being cheated and robbed and held hostage by wayward cells that have forgotten their true nature. Yes, I am having feelings, and mostly now I am mad!

Guardedly Optimistic

First, the good news. There is no sign of new cancer in my abdomen (and this time the radiologist got a good look at the site of the surgery and my cancerous bile duct).

Next, the not-so-clear news. The spot in my abdomen has grown. I could see it on the CT scans that I spent hours looking at over the weekend. The radiologist didn't even notice it (it's not "in" my abdomen, but just under the skin by my incision scar, which is why I can feel it so readily). The new oncologist, Dr. J, said that it could be a "granuloma. . . . (something)" and not an "escaped" cancer cell from the surgery that's been growing. I don't have a good feeling about it, and I want it out!

The good news about the "spot." Dr. M, the surgeon, has agreed to cut it out, and left an email message for Dr. J to that effect. I haven't talked to him about how soon we can schedule it, but I'm hoping it will be within a few weeks.

The not-great news about my tumor marker. It's gone up. However, it hasn't gone up much; from 70 to about 134 since September. Folks who get really sick from gallbladder cancer have numbers in the thousands. The oncologist wasn't particularly worried, and said that it is "indicative," but not "diagnostic." The best possible scenario would be that the "spot" is removed, is escaped cancer cells that have been growing, and my tumor marker goes down afterwards.

The bad news. I still have gallbladder cancer. Bad news, indeed, but not "new" news.

The good news. It's almost six months since my diagnosis, and I am still alive. I continue to feel good, and to enjoy my life, and very much to appreciate the gift of life.

The really good news. I am feeling good, feeling grateful, feeling loving as I look forward to celebrating Thanksgiving tomorrow and this weekend with family and friends. And I know that I haven't waited until this one day in a year to express my love and gratitude to those in my life who love, support, and care for me. Happy Thanksgiving!

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?