Off Chemo for Now

Yesterday, I talked with the oncology nurse, Sue, about my very hot and sore feet. She told me to go off the Xeloda. (I know from the discussion boards that folks can end up with very painful sores on hands and feet with Hand-Foot Syndrome, and I guess she was trying to help me avoid getting worse. If you read this link to more information, you see that what is happening is that the drug is leaking out the capillaries in my feet and irritating them and the surrounding tissue. Weird.)

So, I'm mostly relieved, and a little anxious about the impact on my tumor. But I am pleased to begin de-toxing from the drugs three days early. Already this morning, my feet felt a little less hot and a little less sore. I'm working at home today to give them a break, and plan to be back on campus tomorrow.

Sue and I also talked about how hard the last oxaliplatin infusion was, and I told her I want to do some things to make it easier next time. I told her what had happened, and she commented, "So, you toughed it out." I guess she's right, I did. I just wanted the infusion to be done, so I didn't have them stop earlier or slow it down. Anyway, they can infuse first with calcium and magnesium (I think that's the combination), and that seems to improve the tolerance for the drug. To ease the pain in the arm being infused, they can put in a port in my chest, so that the drugs are going directly into a large vein, not a small one. She said - and I've read - that the port can make a difference.

So, this coming Monday I go for the CT scan, and we see what's inside. I'm hopeful and optimistic that there's some good news there, although this is indeed an unpredictable journey.

To all of you who wrote about "Make no comparisons," I do indeed find it easier to ignore the opinions of others since turning 50 and settling into maturity. But even from that easier place, there are moments of falling back into that old place. Thanks for your sharing and your cheerleading!

"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 . . .

Six Cell Rules Broken by Cancer

How do cancer cells do their thing? Why are they so dangerous? Why can there be cancer in essentially each organ of our bodies? What makes them break the rules of cell existence? I have no answers to any of those questions, and as far as I can tell, the scientists don't know a whole lot more than I do about the origins of cancer. But, since I was diagnosed with gallbladder cancer, I have been trying to acquire a real layperson's understanding of the disease. I just read an article that helped me (although, goodness knows, I didn't understand all of it). Mostly, I really, really learned a lot from a small side box to the article entitled "Hallmarks of Cancer."

The article is in the March, 2007 edition of Scientific American, and it's entitled "Mapping the Cancer Genome," about efforts to begin mapping the genes involved with cancer as a way of learning more about the disease in general, and hopefully, ways to treat it. The project is called the Cancer Genome Atlas Project, and the plan is for it to follow the pattern established by the Human Genome Project, which completed mapping of the human genes about three years ago.

But the sidebar talks about the SIX rules of cell existence that are broken by cancer cells! How do they get away with it? Why don't our natural defenses step in after step 1, or 4, or 6 is broken? In the article itself, the author comments that "Some mutations may disable genes that normally protect against abnormal cell behavior, whereas others increase the activity of disruptive genes. Most cells must acquire at least several of these alterations before they become transformed into cancer cells - a process that can take years." (p. 52)

The sidebar begins by commenting the six abnormal capabilities listed below together give tumors their lethal power to overrun their native tissue and spread through the body.

Here are the Six Cell Rules Broken by Cancer:

1. "Self-sufficiency in growth signaling. Cancer cells amplify external growth cues or generate their own."

2. "Insensitivity to antigrowth signals. Cancer cells become deaf to quiescence cues from surrounding tissue." (I'm a little fuzzy about this one, but I think it means that cells signal each other that it's time to grow or time to stop growing, but cancer cells don't listen to the "stop growing" message.

3. "Evasion of Cell Suicide. Mechanisms that should trigger or carry out a self-destruct program in damaged cells are disabled or overriden." (This is the apoptosis I've been writing about for months.)

4. "Limitless replicative potential. Cancer cells evade intrinsic limits on the number of times a normal cell can divide."

5. "Sustained blood vessel growth. Tumors emit signals promoting the development of new blood vessels to deliver oxygen and nutrients." (This is why one of the most promising new anticancer drugs, Avastin, is in trials for most/many cancers. It was included in the clinical trial originally proposed to me last summer, and I may still add it to the regimen.)

6. "Invasiveness and motility. Cancer cells defy multiple signals and forces that hold a cell in place and prevent it from traveling to - and thriving in - other tissues." (This is the metastasis that is so dangerous to those of us with cancer, where the cells wander about the body until they find a spot to settle, divide, and grow, and become a danger to this new organ.)

Anyone reading this with more knowledge of biochemistry and these statements, please feel free to chime in!

So, today is Day 10 of this cycle, and I felt really, really tired and sleepy earlier in the day, but have felt better as the day went on. I told folks at church I felt "floppy." Now I'm not peppy, but better. I was nauseous a lot yesterday, and had better appetite today. Now I'm on the downward slope of this cycle, and hoping that each day is better than the one before. Twelve days until we leave for St. John! Yeah for sunshine and swimming!

Good News on the Chemo Front

What a delight your comments have been to my post yesterday about oxalis and oxaliplatin! Mikebel, I don't know you, and don't have any way of contacting you, but I really appreciate the information about oxalic acid, and how oxaliplatin was developed. I didn't know any of that, and I love information! I also love rhubarb, but I'd rather eat it, even without sweetener, than have infusions with oxaliplatin! And I think I'll pass on the spin in the washer with the oxalic acid, Jan, but I get that it's a serious chemical!

So, without wanting to get too excited, I have two reports on the chemo front.

The first is that the "spot" in my abdomen (actually "spot #2" since the first one was removed), is noticeably smaller than it was in January when I had my last scan. It's still there, it's round and hard, but it no longer feels like the tumor that wants to gobble up my insides, or grow to be a grapefruit. Of course, I won't know anything about the more dangerous tumor that's inside my abdomen, out of reach, and endangering some of my internal organs until I have the scan on March 5. Still, it makes sense that if my "spot" is shrinking, so is that nasty tumor inside! So, this gives me optimism that my fight against the tumors is having success! (And after some of the tough days this past week, that's especially good . . . ) Since the surgical oncologist, Dr. M, had mentioned that this might be a reason to keep this "spot," I'm appreciating his suggestion. I can't believe I can actually feel a change in it!

The other report is more anecdotal, me making up a story again. I have acne rosacea on my face, across my nose, and it is an annoying skin condition that produces ugly red spots and blemishes. I have topical medicine for it (metrogel), which may be keeping it from getting worse, but mostly hasn't seemed to do much. However, I've noticed in the last two weeks that my skin is peeling around my nose, and my red spots seem to be slowly clearing up. So, I've decided (here's my story) that it's the chemo, which targets fast growing cells in the body, that has attacked my rosacea and made it much less problematic. (I still say that once a person is in her 50s, she should not have problems with acne of any variety, but this ailment has not listened to my complaints.) Imagine! The chemo may have cleared up my skin!

So, I've felt tired but good today except for my appetite, which is in the pits. I kept thinking about milkshakes, so I finally made one this evening, and have to drink it in very slow sips to warm it in my mouth, but I feel like I'm breaking some rule in a fun way! The thing is, I will have to find something resembling dinner also, because I have to take my Xeloda tonight after dinner. Otherwise, I'd probably just pass on dinner altogether . . .

Thank you again for all of the responses, which make me smile every time I think about them. I so appreciate feeling that we are in an extended, long distance conversation in writing . . .

Oxaliplatin & Oxalis - Day 7 of this cycle

Now that I'm a week past my oxaliplatin infusion, I'm feeling better. That is one intense drug! I think one of the reasons the water has tasted so bad has been that the drug messes with my electrolyte balance, and makes many things taste funky. Thanks to the many folks who wrote with suggestions about what warm beverages to drink. Some of them I hadn't thought of! I appreciate the support and the thoughtfulness of your suggestions.

But this post is about flowers, of the family Oxalis, with two of them pictured here. From the beginning, I've been struck by the similarity between the beginning of these two words, oxaliplatin, the chemo drug I'm infused with, and oxalis, which is a lovely flower with three lobed leaves. I've occasionally grown oxalis, as a house plant (they are often sold as "shamrocks" in March, with their three-lobed leaves), but even that's not the story I want to tell. I just tried to look up the origin of the word oxaliplatin, and got nowhere. I do know that it's a "platinum" drug, so that explains the end of its name. I don't know about its beginning. So, here's my oxalis story.

When I was 10 and in fifth grade, I participated in the New Jersey State Grange Spelling Bee. Spelling has always come easily to me, and I had won for my school, and went to the state capital, Trenton, for the state spelling bee. "Way back then," in the 1950s, we didn't prepare as intensively as kids do for state spelling bees (if Akeelah and the Bee is any indication), but I think I did some practicing before going. As the spelling bee went on, I was doing very well. Then there were just two of us left standing on stage. My next word? Oxalis, except that the person reading the words pronounced it "oxy-lis." I asked for a definition, learned that it was a flower/plant, asked for it to be repeated (and wished later I'd asked for alternative pronounciations). With the pronunciation, it sounded most like oxygen, so I went with o-x-y-l-i-s. As you already know, I was wrong. The one contestant still standing spelled her word correctly, and won the state championship.

I was happy to win second place in the state, and to get my picture in the paper. When they asked me to say something, I said it was good that people would now finally hear of "Vincentown," the tiny town in NJ where my family was living. I didn't like being from someplace no one had ever heard of. Aren't ten year olds amazing? Like my getting second place was really going to make a difference! Anyway, I always like telling that story, and I'm pleased I did so well, and I've been fascinated by the flower oxalis ever since. And I wouldn't misspell it again, that's for sure! Lucy is a good speller, too, and it's been fun sharing this story with her as she has worked her way through increasingly difficult words.

So, there's probably no connection between this intense chemotherapy drug and these sweet little flowers. But I have better associations with the drug if I think of the flowers. Tomorrow begins Week 2 of this cycle. I'm hoping for increasingly less cold sensitivity, and increasingly more appetite and that food and beverages will taste better.

Today, I Haven't Felt Healthy

This is about chemo side effects. I don't think my essential health has changed (although I'm hoping that the tumors are being eaten up by the chemo), but I had a rough day today. As I start to write this, I worry about whining, but I also want to share some of this, because I know I'm not alone in experiencing side effects from the chemo.

The oxaliplatin makes me sensitive to the cold. Today was warmer than it's been, reaching almost 50 degrees F in Boston, so my long johns (under my pants), and long coat and hat and scarf and gloves made me feel and look overdressed for the weather. And, I confess, I was hot underneath all of those layers this afternoon. But, I had to keep the scarf over my mouth and nose because the chemo is making them super sensitive to the cold. My nose feels like it's 10 degrees out, with a biting wind, and every nose hair is freezing. But it was 49 degrees F when I walked to the train this afternoon!

In the elevator as I was leaving my office building, a secretary from our floor (but not my office, where everyone knows I'm on chemo) looked at me bundled up and said, puzzled, "It's warm outside." "I know," I responded, "but I'm on chemotherapy, and a side effect is extreme sensitivity to cold. That's why I'm bundled up." I felt that her comment had just confirmed for me how bizarre I looked.

The cold sensitivity makes me unable to drink even "room temperature" water. Do you know how uninteresting warmed, unflavored water tastes? I know I'm not drinking enough, as a result. My tea doesn't taste that great in the morning, and coffee is tasting too strong. What to drink so that I don't get dehydrated?

(A next day note on the beverage point: After I wrote that, I started to wonder what would make my tea taste better, and decided to add a little sugar and some milk, making the tea taste like what Mom would fix for me when I was sick as a child. It seems to be doing the trick, and I've had more liquids in the last 12 hours. Still, if anyone has great tips on what to drink to stay hydrated when only tepid or warm liquids can be consumed, and everything tastes yucky, I'm open to suggestion!)

The Xeloda can give me "hand-foot syndrome." I'm noticing already that my hands and feet have "hot spots," like I've been hiking and I'm developing blisters. Makes me feel like I should spend tomorrow sitting and grading those papers that are still waiting from the weekend. And I have decided that I'll work from home and not go to the city - I don't teach Wednesdays - and not have to deal with whatever weather tomorrow brings.

[A brief interlude for another voice within me: "These side effects aren't that bad. Lots of people have it a lot, lot worse." My inner response: "Yes, but they are my side effects. And besides, I don't want to compare my experience to other people. It's my experience."]

All right, there's more, but enough already. I still have my hair, I'm not vomiting, I can eat and keep food down, I can function well enough to work. I know lots of people have worse side effects than I'm having. But, with treatment that's essentially experimental with gallbladder cancer, and which may or may not be having an impact on my tumors, I have to keep asking myself if the benefit outweighs the problems. It's about quality of life as well as quantity. I'm not having a CT scan until March 5, and that's when we'll learn what's happening inside. And as each day passes since the oxaliplatin infusion, the side effects should lessen, and I should be able to drink milk shakes at night, and eat ice cream, and drink cold beverages. And I should be able to breathe the air outside, whether it's 10 degrees or 55, or even 80 (in St. John, in a little more than two weeks!) On this hard day, I just felt like I was fighting a losing battle, walking uphill into a storm, or some such metaphor for things being tough. So, I share this even though I know it's just a snapshot of one day in my journey through cancer world.

The Robin in My Backyard

Like many folks who have grown up in the Northeast, I have come to see robins as a first sign of spring, as they return from wintering over somewhere warmer and farther south.

This year, I have a robin in my yard that's never left! I like to make up stories about things, so the story I've made up about this robin ("my" robin) in my thinking is that it was lured to stick around this winter when the winter began so mild. I swear I remember seeing it catch worms in the yard up to mid-January, before the weather turned suddenly and deeply wintry. At first, I worried about what she was eating (Yes, in my mind, she's a "she;" see how I make up stories?), and then I noticed that the berries on the dogwood tree in the side yard were slowly disappearing. Next, she discovered the holly bush in the front yard, full of berries, and she would even sing her tuneless robin song from the front yard, as if she had discovered a great treasure. Now, I don't know of any remaining berries in my yard (although she might), but I see her almost every morning at my water garden.

So, here's a photo of my water garden in winter; no robin; she's too smart to stick around when we (or the yard cats) are outside. In order to allow exchange of oxygen/carbon dioxide for the fish in the water garden, I put in a floating water heater. It keeps the ice from freezing the entire surface of the water, and, in addition to keeping my fish (and any bullfrogs wintering over down in the leaves) alive, it provides fresh liquid water for the birds, and cats, other wildlife, and for my robin. And even for a stray bluebird (formally known as an Eastern bluebird).

A few weeks ago, I saw a bluebird at the water garden, and wondered what it was doing this far north when it's so cold. I don't see bluebirds in my yard in the summer, so I was especially surprised to see her there. My friend Richard, who has bluebird houses and loves them, too, showed me a picture in a bird book of about 10 bluebirds tightly packed in a bluebird house in the winter. The book also said that bluebirds stop eating insects in winter and switch to berries. So then I added to "my story" about "my robin," and figured that, like bluebirds, she has shifted from her usual diet of earthworms to berries.

Okay, I know this has nothing to do with my illness, or my current physical state. So how do I feel today? Pretty good, tolerating the chemo well, eating well. But I'm not going out much with the cold air and my recent infusion of oxaliplatin, so I look out the windows a lot and dream of spring and things growing and turning green again. Even though this robin has stayed for winter, and so is not the typical harbinger of spring, she makes me smile and makes my heart happy. I admire her fortitude, her ability to survive and even thrive in this alien weather. I guess her life-fullness gives me hope, makes me happy. So, I share with you her story.

Credit to Patty for going out on this cold day to take this picture. Thanks, Patty!

Later note: I woke up thinking this morning that not everyone who might read this knows what these birds look and sound like, so I've created links to some websites with photos and bird songs, and some links to water garden pictures - in full summer mode, of course!

Day 2 of Chemo - Feeling Better

Thanks for the kind words of support, on and off the blog, about yesterday's tough day post-infusion. Now that it's evening of Day 2, I feel I can say that I'm doing better. I still have an incredible sensitivity to any cold, and feel best when I'm sitting on my comfy chair with blankets on my shoulder and lap.

I'm less nauseous than I was last time on Day 2, and I think it's because of the sea bands. So, I've been able to eat, and took my morning Xeloda without a problem.

I finished a great novel today, High Country, by Nevada Barr. Last summer when we were in the southwest, we discovered her mystery novels because they were sold in the national park stores. Her main character, Anna Pidgeon, is a National Park Service ranger, and every adventure takes place in a different national park. She does a wonderful job of conveying the ambiance of the parks - I love a novel that conveys a powerful sense of place - and there's some kind of mystery to be solved in each one of them. This book is set in Yosemite, which we were scheduled to visit last summer, but didn't because of my hospitalization. I wish I had seen it! Anyway, if you are looking for a consistent, good new author of mysteries, I recommend her books. I started this one a few days ago, and read it through the infusion yesterday, last night and today, and now it's done. I only have one or two more of her mysteries to read.

One other medical note. My tumor marker numbers were back yesterday. My CEA, which had climbed to 14 or so, has dropped to 9. My CA 19-9 was about 310 last month, and has climbed to 492. so, we liked the CEA drop, didn't like the CA 19-9 climb, but . . . ? The nurse did comment that it's possible the CA 19-9 was even higher in these weeks before the chemo kicked in, and that it's on the way down.

So, dear friends, know that I am doing well under the circumstances, and especially well in comparison to yesterday. Thank you for your good thoughts and wishes of strength and prayers.

Rough Afternoon & Evening

It's been almost 24 hours, as I write this, since I got my infusion of oxaliplatin yesterday. It's been a rough day for me physically. I just checked the site meter, and I see folks have been checking in. I'm sure some of you wonder how I'm doing since yesterday's infusion, so I wanted to write a post.

The beginning of the infusion went pretty smoothly, but the last half hour or so left my arm was aching, and when it was time to go, I already had pins and needles in my legs, and some trouble walking. And I felt awful. Dozed most of the way home, hoping I wouldn't throw up (and I didn't), and I went right to bed for a few hours when I did get home.

Last night after a light supper, I started a new round of Xeloda, the chemo I take in pill form after breakfast and dinner.

I slept pretty well last night, although my cold sensitivity means that I need to draw warm tap water in order to drink some water during the night. And I have an ache in my shoulder that may require a visit to the chiropractor. Not feeling as healthy and strong today as I was on Wednesday!

I'll take it easy today. I don't have any place I have to be, and nothing I have to do. Actually, that's not completely true, since I have four more batches of papers to grade this weekend. Still, laying low seems like just the ticket for today. I wish I felt better, though.

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!

Stamina-less!

This is just a quick check-in to say that those four groups of papers to return to my students are finally graded! I'm so relieved that I can return them tomorrow, as my students need the feedback.

One thing I had to figure out about grading is that my energy is all turned around over the course of the day. I've always been a night person, with lots of energy in the evening - my favorite time of day to grade papers! Since I started chemo, my energy is best in the morning, and slowly seeps away as the day progresses. By evening, I'm wiped, and only good for dinner -maybe - and an hour of TV before falling into bed. The stamina I have relied on so much all my life has just left me.

I talked with Tia tonight. She started chemo last week; Oxaliplatin and Gemzar, one drug the same as mine, one different. We compared symptoms and stories. We are both relieved to be doing really well, all things considered.

Tomorrow is my big teaching day, and Wednesday I get to see my doctors in the midst of a forecast northeaster snowstorm. We'll see if this one is more than a dusting, and how the roads are. I trust we'll make it there and back safely, and so will Alice and Lexie, going to Boston for Lexie's chemo.

Life without stamina. One foot in front of the other, and does bed ever feel good at the end of the day!

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.

I read Lynne's blog too!

As all of you do, I read Lynne's blog too. Even though we live together, I too eagerly await a post to hear what's going on in Lynne's mind. We talk a lot about life and love and cancer and work and kids' schedules but sometimes "life" intervenes and we don't finish conversations and so reading her blog helps me get a snapshot of her thoughts that we don't always get to in our day to day conversations. I also await people's comments. I do get some vicarious benefit from knowing all of you are out there offering Lynne kind words, support, laughs, and a space just to be. Lynne's cancer diagnosis, as you can imagine, has been hard for all of us in this family, kids included. Sometime when we are all just hanging out watching "American Idol" and cuddling it is easy to forget that cancer is apart of our life and then in a moment I remember and life seems to come crashing down.

It is hard to hear about Lynne's ever increasing aches and pains related to her cancer growth, hard to hear only because there is nothing I can do about it. I sooooo want to be able to do something to make this all go away. My friend Judy and I talk about searching for a magic wand (or perhaps more realistically, a magic pill) that can somehow make Lynne well. We haven't found it yet. Instead, we take it a day at a time. I try to balance the needs of Lucy and Nathaniel, stay fully present to Lynne, have a sermon each Sunday (as well as tend to other church needs)- but most days I just want to take a nap.

I guess I just wanted to say ... I am here, I love Lynne with a passion I never thought possible and this whole situation is breaking my heart.

Musings, Mary Oliver, and Chemo Brain

Patty tells me that a lot of folks have logged on today for 20 seconds or so, to see if I've made a new post, so it must be time for one. Thanks to all of you who responded to my last post; I knew that some of you were reading, and some of you are "new, online friends," and it's good to hear your voice (as it were, on the web).

I'm done traveling to Boston for this week, and I'm so relieved about that. We're having a prolonged cold spell - don't think the temperature has risen to freezing all week - and getting dressed and walking outside takes a lot of time, effort and focus! And I only have so much focus to give!

I haven't had energy to grade papers all week, so I'm way behind (and I apologized to all of my classes about it this week). Grading is number one on my list of things to do this weekend. I got home about an hour ago, and Patty made me poached eggs (my stomach was rocky today), and a little later, I was looking for the tote bag with papers to grade, and convinced myself I'd left them on the commuter train. I was so mad at myself! A few minutes later I wandered in by my favorite chair, to find the bag sitting there, waiting for me. In half an hour, I had completely forgotten I'd brought the bag in and set it down. Chemo brain!

One more day of Xeloda in this cycle, and then I have a week off. Aside from fatigue and a sometimes rocky stomach, I haven't had any real side effects. And I'm grateful for that . . . I've read lots of horror stories about tough times folks have had with the same chemo regimen I'm on.

I've been too tired to grade papers on the train, as I typically do, so I've listened to a lot of the songs, poems, and readings on my iPod (Christmas present!) The other day I heard a poem by my favorite contemporary poet, Mary Oliver. Much of her poetry is grounded in her observations of the natural world in a poignant, unique way. This poem is bittersweet and beautiful and evocative, so I'll share the last few stanzas here. Entitled "Peonies," the poem begins by describing, in detail, the sight of peonies opening in the spring from tight green buds to fragrant, colorful flowers. She concludes:

"...Do you love this world?
Do you cherish your humble and silky life?
Do you adore the green grass, with its terror beneath?

Do you also hurry, half-dressed and barefoot, into the garden,
and softly,
and exclaiming of their dearness,
fill your arms with the white and pink flowers,

with their honeyed heaviness, their lush trembling,
their eagerness
to be wild and perfect for a moment, before they are
nothing, forever?"

from her book New and Selected Poems, Vol. One

Do you love this world? I do, and that line has stayed with me all week.

It's Okay to Laugh . . . and to Just say "Hi"

Yesterday after church, my friend Jackie said that she'd been reading my blog, and found herself laughing (especially at the post about my cold sensitivity after the Oxaliplatin infusion). Then she backed up as if to apologize, as if laughing at something I've written is somehow not taking my diagnosis seriously. "Good grief," I said, "I want to be funny sometimes, and if you find it that way, good!" Many of you reading this blog only know me through these written words, and perhaps I do come across as serious; when I'm speaking, I have trouble being funny or making jokes, because folks do take me very seriously. I do have a dry sense of humor, so when I see what's funny in this unfunny situation, I try to make the most of it. Please laugh! And tell me any funny stories you have about Cancer World!

The photo I posted here is of our family at Arches National Park last summer, laughing. A stranger took this picture; we found many strangers who offered, or agreed to take our picture while we were traveling. As we posed, Patty would say, "Think Christmas card!" and I would add "No pressure!" I think it was at this point that we all began to laugh. And, we did select this photo for our Christmas card in December.

About saying "Hi," I want to speak to all of you who have not responded to the blog, and who haven't even sent me an email on the side. It really is okay to just say "Hi" after you've read a post; it's not necessary to have something profound to say. If you look on the right side of the blog page, just below my photo, you'll see a little box that says "site meter." I added this feature last month to get a sense of how many people are reading my blog; check it out! It's not a secret.

Today, the meter says that I am averaging 91 views per day. That's a lot! Now, I'm not saying you should "check in" every time you read the blog, or that you have an obligation to let me know you have visited. I just want to say that I'd like to have a better sense of who is reading the blog, and what your responses and experiences are. So, remember, it's okay to just say "hi" in the comment section. (And you can post as "anonymous" and just sign your first name, and not go through any fancy process with blogspot.)

Finally, I want to say that I continue to tolerate the chemo well, and the "sea bands" (see yesterday's post) seem to taking away my unsettled gut feeling and leaving me open for a better appetite. I am still recovering in the nether regions from the stent placement on Friday, but I trust that it will settle down, too. The urologist said he had trouble getting past the place where the ureter was blocked, so I'm really, really glad the procedure is done, and the path of the tumor is blocked instead of the urine.

Today is February 5. In one month and 4 days, my family and I leave for our Caribbean vacation. Sunshine, snorkeling, swimming, and just laying in the sun! Can't wait.

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 . . .

Stent Surgery Successful

As scheduled, I had my day surgery - with general anesthesia - to insert a stent between my kidney and bladder. Things went pretty much as scheduled, time wise and surgery wise. We'll be sure that the stent is doing its job and keeping the urine flowing from my right kidney when I go in for my next CT scan (still quite a few weeks away).

I'm trusting that it was successful, and that things will keep flowing!

Yesterday, I discovered the limits of my energy with a long day that left me wiped out and feeling crummy. I had felt well all day , and so I taught my classes, went for my pre-op appointment, took the commuter rail home, went to the drugstore for a prescription for a scopalamine patch (to reduce nausea and vomiting following the surgery), stopped at the supermarket, and came home exhausted. Did too much. So now I know there are limits to my energy, and I need to be careful about pushing them! Still, I did feel good early in the last 3 days, and have felt that I am tolerating the chemo well.

Today is Day 8 of this chemo cycle, and I did miss this morning's dose because I couldn't eat the morning of the surgery. Back to the Zeloda pills tonight, though.

That's my news for today. I'm going to take it easy tonight, doze my way through Friday night TV probably, and trust that tomorrow I'll feel great again.