The Meltdown that Didn't Happen

Last week, my blogger friend Jeanne (the "assertive cancer patient") emailed me and some other cancer blogging folks to suggest that we all blog on the same topic during the same time. Her choice of first topic was "Meltdowns," and you can read her introductions to the topic on her website here. I'm not mentioned there, because I wasn't sure I wanted to take on the challenge, even though I was having a meltdown-worthy week, as you know if you regularly read this blog.

Should I start with a definition? I think a meltdown is an emotional boilover, when suddenly everything reaches a point greater than we are capable of bearing. Have I had meltdowns in my life? You bet. Have I had meltdowns since my cancer diagnosis? You bet. What tends to trigger me, though, tends to be something besides the medical news, as if I can process the medical news internally, and then an emotional event throws me over the edge.

Why didn't I have a meltdown about all of the really hard medical news I was getting? Practically speaking, perhaps because no one emotional event threw me over the edge. In addition, it's hard to meltdown in a house with an 8 and almost-11 year old. Too hard to explain afterwards!

Plus, I think it's harder to meltdown while on chemotherapy. At least the drugs I'm taking seem to flatten a lot of my experience, make it hard for me to fully feel what I'm feeling. How can you meltdown when things are less than fully felt? Not easy.

One thing I am sure about is that those of us with cancer are entitled to our meltdowns, to those times when we feel simply overwhelmed by all that is happening and has happened to our bodies, minds, and spirits. Cancer can take over all of our lives so readily that it's hard to remember life before cancer. And folks who encourage us to always feel upbeat and chipper despite painful treatment, dire diagnoses, and the exhaustion of the disease, do themselves and us a disservice. We feel what we feel, we process information in the way we do, and while prayers and good wishes help us feel supported, they can't change our diagnosis and lived experience. Sometimes the best thing someone can do is express concern and ask if there is anything they can do. That simple question has spurred me to think of things simple or complicated that can be helpful as I live in Cancer World.

Reading my blogging friends posts about melting down, I see that they are talking about melting down in public, about things getting really out of control with the medical treatment providers. That makes me feel really lucky, because I have consistently good and responsive treatment, even if I wish that my oncologist were more willing to do a few things differently. I haven't had any public meltdowns in a long time (since before cancer), so I don't have dramatic stories to share as they do.

So, I didn't have a meltdown last week, and maybe I will, maybe I won't this week. I can feel in my body the resistance to going through the two-drug chemo routine again, as I feel that I lost the two weeks after that infusion to excruciating fatigue, and now it seems that the chemo didn't work. But, I had the CT scan yesterday, won't get results until tomorrow, and somehow, in the next few days, given the information I have, I need to decide what treatment option makes the most sense as we proceed. It feels like a very difficult decision to make with incomplete information - Where is that crystal ball when you need it? - and I'm not sure how these next days will progress. Stay tuned for the next installment!

Optimism and Hope

Thanks for all of your suggestions, thoughts, prayers, anger for and with me, and general support since my post mid-week. I've certainly been up and down this week emotionally, as I processed the medical information and its implications for the future. And the truth is, gallbladder cancer is aggressive and dangerous, and my diagnosis and overall prognosis haven't changed since last May. I have Stage 4 gallbladder cancer, and it is a terminal diagnosis. I keep hoping for more time, and maybe I'll still have it, but the truth is, no one knows what the future holds.

We talked with the oncologist, Dr. J, on Friday, and he is eager to see the results of the CT scan, scheduled for this coming Monday, but we won't have the radiologist's report until Wednesday or so, and then at the end of the week, I'll meet face to face with Dr. J. The CT scan could provide some surprising good news, in which case we could consider going on with the current chemo. However, I'm liking the idea of stopping the chemo and trying the biologic agent he mentioned last month, sorafenib. It's not a chemo, so doesn't have the same side effects, and maybe I could regain my appetite and energy, and actually be able to do some things I would enjoy.

Regardless, I will undoubtedly have some medical procedures to try to bring things under control. I am currently scheduled to have the stent to my bladder replaced on May 8, and I'll go ahead with that if I don't do chemo on May 4. If my bilirubin continues to climb, we'll have to do something to drain the bile. If I'm not on chemo, my body should be able to tolerate these medical procedures better, and maybe I can regain some of the weight I've lost in the last four months.

So, why am I feeling optimistic and hopeful? Truthfully, I don't know. I think a lot of it is my temperament and my desire and inclination to see things in a positive light. I don't think I'm in denial; I spent a lot of time this past week feeling very sad, and internally processing the new information. It wasn't what I wanted to hear, but it's what was, what is, and I can't change it. And I guess I return to where I started. The news hasn't been good about my diagnosis from the beginning, and nothing has changed that . So, I'm left with the choice of feeling miserable about the situation, or just accepting what is and moving on, trusting that I will have more time to enjoy my family, my friends, the things I love to do, like gardening and baking and silk painting and scrapbooking. The truth is that none of us knows our future, nor how many days are left in our lives.

Not-so-Good News

So far, this has been a tough week in the medical news department. On Monday, we learned that my bilirubin has doubled. That's not good, because it suggests that the chemo is not shrinking the tumor enough to impact the place where the tumor is pressing against my bile duct bypass. At some point, having bile build up is uncomfortable, and then dangerous. This is the condition that brought me to the hospital last May.

Then, today, we learned that my CA 19-9 numbers have doubled, to around 4,000. That's also very bad news, and a further indicator that the chemo is not working. So, I'm scheduled to talk by phone to the oncologist, Dr. J, on Friday, to go for a CT scan on Monday, and then to meet with him on Friday, May 4, when we'll re-evaluate the treatment plan.

On top of all of this, the latest infusion of Gemzar has sent my hair falling out at a more rapid rate. Folks don't often lose all of their hair with this drug, but at this rate, I'm soon going to have very sparse locks. So, on Friday morning, we go to the wig place so that I have a wig as an option if I continue to lose my hair in birdsnests-full clumps each morning in the shower.

All in all, my spirits are pretty low with all of this news. The bad news has been offset by some glorious spring weather, and the sight of spring flowers finally beginning to appear. Still, this is my life that's gradually being measured by this test and that, and I don't like the news. At all. Please keep your prayers and good wishes coming. I certainly need them this week.

A Successful Day at the Hospital

This is an update on yesterday's two appointments at the hospital - one for chemo, and one to have the port inserted. The amazingly good first news is that my blood work was good. The numbers were slightly reduced, which is expected for someone on chemo, but were "excellent" in the eyes of the chemo nurse, especially given how I've been feeling. Dr. J, the oncologist, said it must just be the chemo itself leaving me so wiped out.

With good bloodwork, we proceeded with the infusion of Gemzar, the only drug for them to administer mid-cycle. I'm hoping with just the one that I will not be as wiped out over the next two weeks, when I go back for the whopping dose of the two. (And even then, Dr. J said he would reduce the dosage by 15-20% to help alleviate the side effects.) I was grateful for the saline and sugar infusions I got with the Gemzar, since the surgical procedure scheduled for the afternoon meant I had had nothing to eat or drink since midnight. And I was thirsty!

After the chemo, we went down a few floors in the building to day surgery and I was prepped for the insertion of the port (Port-a-Cath). We got to see Dr. M, my favorite surgeon, and to update him on my state. We are all now most worried about my liver, and the bile flowing from it. Dr. M created a bypass in May which has worked fine, but the tumor in my abdomen is pushing against it, and may be restricting the flow of bile. Everyone thinks I'm a little jaundiced, and my bilirubin reading was up two weeks ago. We didn't get the results from yesterday's bloodwork on the bilirubin, but if the bypass gets blocked, I am looking at a stent to keep it flowing.

The insertion of the port went really smoothly; I was in and out in no time, and without any soreness until a little later in the afternoon. Dr. M said he was able to insert a "small" one, so once it's healed, it probably won't even show in my ball gown! (Very funny since I can't even remember when I would last have worn something of that description!) But, lovely that he was thinking about me and how it would look. I do wear bathing suits! With a 12:30 appointment for pre-op, we were on the road by 4:30, and that included time to wait for a chest x-ray following the procedure to make sure everything looked good.

So, next chemo day, my port will be used to draw blood, and to infuse the drugs, which apparently makes it all go much more easily. Today, I feel good (yes, it could be partly the steroids to fight the nausea), and I'm enjoying our seasonably warm weather and bright sunshine.

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.

Information on Ports

Just as I was preparing to have a port (or port-a-cath) inserted on April 2, one of the other cancer bloggers I read regularly wrote about having her port removed. She even has a photo of what hers looks like, and commentary by a surgeon about the process of inserting and removing ports. If you feel completely in the dark about the whole procedure (as I was), her post is worth reading. That appointment was canceled as we revisited my whole treatment plan, and now I am scheduled to have the port inserted this Friday, April 20. And the best part of the new appointment is that my favorite surgeon, Dr. M, will be doing the insertion.

As I mentioned, my fellow blogger spends some of her post quoting from "Orac" a blogging surgeon/scientist, who writes about ports, and I'm going to borrow from her approach and include some of his information as well.

Orac begins, "In cancer, the goal is different [than in dialysis]. It's shorter term, and the tools used are less permanent. The goal is to give the patient durable vascular access that allows chemotherapy to be given, usually over a few months. Some chemotherapeutic agents are very harsh on the veins, and because of that it's highly useful to place a catheter in a large central vein with high flow. . . . "

Then he describes the port itself: "Finally, there are totally implanted ports (like the Port-a-Cath), where the entire assembly is implanted under the skin, and the port is accessed through a resealable diaphragm using a special needle inserted through the skin. These can be left in place for months or even years and tend to be the first choice for chemotherapy. Unless a patient is thin enough that it's possible to see the outline of the metal part of the port sticking up under the skin, they're basically invisible."

Here's his description of why a patient would want the port inserted: "If you're a cancer patient who needs a prolonged course of chemotherapy, your port is your friend. Your blood can be drawn through it (and you will need frequent blood draws). You can get your chemotherapy through it without painful needlesticks and burning out of veins. As I said before, injecting chemotherapy in to peripheral veins can be quite painful for some drugs, and a port will eliminate that problem. These two things alone can go a long way in improving a cancer patient's quality of life. It is true that ports aren't without their complications. They can become infected and require urgent removal. They can clot, necessitating treatment with clot busting drugs. Sometimes they can cause a clot in the large blood vessel in which they are placed, leading to arm swelling and even facial edema, not to mention urgent removal of the port. There can be rare misadventures where the port catheter breaks and goes flowing off in the bloodstream, requiring angiography to fish it out. However, on the whole, ports do far more good than harm, and, before radiologists started doing these procedures (which they are doing more and more) general surgeons were the ones who put most of them in."

And finally, speaking as a surgeon, he comments that "It's easy for a surgeon to forget that the insertion and removal of a port represent two major milestones in the course of a patient's cancer treatment. The insertion of a port often represents, even more than the scars from surgery, a daily reminder of the patient's disease, and the insertion of that port represents a long-term alteration of the body necessitated by her disease. It's a constant reminder that life is not normal, a cold, metallic foreign body implanted in her body. Every time a woman feels that quarter-sized metal port under the skin, it's telling her that her life is not what it was; she is not the same as she was; she is not "normal." Even though the implanted port may not even be noticeable even if she wears a wide-necked shirt, other than the small scar left from its implantation, the patient knows its there."

Before I read Orac's post, I didn't know that radiologists were sometimes inserting ports, so when they called me to schedule this new appointment, I said I wanted a surgeon, and I wanted Dr. M. (The chemo nurse, with 25 years of experience, had mentioned that he puts in "superb" ports!) It will be good to have a familiar face before the procedure, and to update him on my state overall. This procedure is done under "conscious awake" sedation, not general anesthesia.

The plan for Friday is to have blood drawn and tested first thing at 10:00 a.m., and to hope that all of my blood numbers are high enough for chemo and then the port insertion. I'm scheduled to have just the Gemzar infused (not the cisplatin), and then, my appointment for the port is at 12:30. The kids are on school vacation this week, and my good friend Sandy is going to accompany me to the appointments while Patty keeps track of the kids.

Today I was going to go into Boston to teach, but just couldn't muster the energy, so my classes are being covered again. Next week is the last week of classes, so things are wrapping up, and I have lots of papers to grade still. I'm glad the semester is ending, as being a full-time faculty member and a full-time cancer patient has been very challenging over these months.

"My Cancer" with Leroy on NPR

This past week in his blog, Leroy Sievers has been mentioning that he will be on Talk of the Nation on NPR (National Public Radio) this coming Monday, April 16, from 2:00-3:00 talking about his blog "My Cancer" and asking people to tune in.

If you can listen, please do. I will be listening, and will try to call if they are taking calls from folks not in the live studio. Leroy has been an inspiration to me over these months as I've written my blog and struggled with my cancer diagnosis. If you won't be by a radio then, the show may be available for podcast, to listen to later. The Boston affiliate of NPR is WBUR, at 90.9 FM.

Leroy has managed to create a national community of those struggling with a cancer diagnosis and treatment by honest, vulnerable, challenging words that brought those affected by his words together in a virtual community of love, support, and learning. Leroy has just had some excellent news, that there is no evidence of disease, and he's trying to figure out where to go from here with his life, anticipating a future that seemed unlikely at best just months ago. He doesn't believe the cancer is gone, just lurking, but the absence of tumors means he can think about the future differently.

In anticipation of the show, this past Thursday I received a phone call from one of the NPR folks working on this show, named Ari; I was called because I've been a regular poster on his blog. He had emailed me the day before to ask if he could call. For a short while following his phone call, it looked as if I might be heading the Boston studio to be a long distance "live" contributor to the show, but they must have found other folks, as I didn't hear back from him.

I told Ari that I thought Leroy has a unique ability to speak to the universality of the cancer experience, and to broaden his experience so that it relates well, and speaks well, to others. He is astonishingly vulnerable in his posts, despite being a male journalist, and has shared the challenges of chemotherapy, the pain post-treatment, the awful waiting to hear the news from tests, and even how it feels to hear "bad" news about results, and then get a phone call the next day saying it was a mistake, and no new tumor was found. So, I said good things, will say them when I call in Monday, and think them about Leroy, but it looks like part of my "15 minutes of fame" will not participating on Leroy's ToTN show tomorrow.

Leroy also mentioned this week that the documentary about his journey with cancer will be aired on Discovery Channel on May 6. I'm going to mark my calendar, and I'm sure I'll have more to say about it as it's closer.

Yesterday was a good day of consistent energy (my body's birthday present to Patty, perhaps?) and I treasured the day. Today I'm more tired, and just finished a post-church nap. Friends at church were praising me for listening to my body this week, but I have to say that my body didn't give me a lot of choice. It told me what I could and couldn't do, and I responded dutifully. This week I'm hoping to be back in the classroom, but I've already thought of some adjustments to my teaching day to make it less taxing energetically. Thanks to all of you who encourage me to keep taking it easy, and who remind me of your love, prayers and support.

On the Virtues of Sitting Still

Yes, I've been sitting still and resting a lot because of the chemotherapy, but, inspired by Philip Simmons' book Learning to Fall: The Blessings of an Imperfect Life again, I want to say a few words in praise of slowing down, sitting still, and discovering our own internal quiet rhythm. I am also happy to say that on this Saturday morning (Patty's birthday!), I find myself rejoining the world of functional adults. I was up and making her breakfast waffles (which turned into pancakes, but that's another story) and was able to stay focused without needing to lay down. That feels like an accomplishment!

Simmons is in a unique position to discuss the virtues of slowing down and sitting still, because his illness, Lou Gehrig's disease, took away over time his choice about movement. The disease robs the body of an ability to use the nervous system, and over time, results in a shutting down of voluntary and involuntary muscles. In this wonderful book, Simmons weaves his own experience with observations of nature and spiritual teachings to share his reflections and what he has learned as his body has slowly stopped obeying his will. I mentioned in an earlier post that our church book group has been reading and discussing this over Lent (and we're not quite done yet). I missed Wednesday night's discussion because I lacked the energy to sit through the discussion, but the focus was on sitting still, slowing down, and finding that place inside that would dictate our rhythms more if we just let them. At one point, Simmons point out that "our challenge is to do nothing in the midst of our doing, to let our actions issue from a still center, to find within ourselves what T. S. Eliot called 'the still point of the turning world.'"

Sitting still is about being quiet and more than that. It's tuning in to ourselves, and finding what nurtures and speaks to us.

Before I was diagnosed with gallbladder cancer, I was a too-busy professional adult and parent, like so many in our culture. One thing I have remembered in these months since my diagnosis is the virtue of sitting quietly, and for me, observing nature is a valuable way of recharging and getting in touch with that still point.

From the time I built my first water garden, about a dozen years ago, I loved to sit by the water, watch the fish, listen to the sounds the water makes rushing and flowing, and just being quiet inside. No lists, no worries about what was undone, just quietly sitting.

Today the sun is shining and it is warmer than it's been (maybe 50 degrees?). I just sat out by the water garden and took these pictures. The fish are stirring, bringing their bright orange, yellow, white and black movements to the water. The water has cleared, and I can see a snail making its slow path, and occasionally a lazy frog swimming through the water. Watching them, I can allow myself to think of nothing else but being there, alive, noticing that spring is finally beginning, and that life goes on.

This week on gray, stormy days, I sat inside and watched the birds flying and eating at the bird feeders. The greatest delight was to see that goldfinches have shed their winter coat, and grown a beautiful lemony yellow spring covering. They were bright spots of color in a dreary gray-brown backdrop. The cardinal would come and add his bright red color as well.

I hope each of you will consider the virtues of sitting still and finding your center, whether it is in meditation, nature, or some engrossing quiet activity that takes you out of yourself. And please don't worry that I'm overdoing it today! It's about time for my mid-day nap!

Happy Easter! - a little late

This evening, 8 days after the last chemo infusion, finds me feeling marginally better, with enough energy to at least begin a new post about Easter. We took some good photos of the kids celebrating Easter, and I wanted to share them.

One of our tradition is coloring eggs, and I still had energy on Saturday morning to color with the kids. Here's Nathaniel, being an 8-year old boy, and Lucy, looking charming and holding the basket of eggs.

Another tradition is an Easter egg hunt at Nana's house. We fill the plastic eggs that are so readily available with candy, and the kids hunt all over the yard. Great fun! Nathaniel searched with cousin Deana, and Lucy searched with cousin Brian.

What would Easter be without flowers? With our unseasonably cool spring, my hyacinths are just beginning to come up, and so were not blooming on Sunday. My Lenten rose, which is related to my Christmas rose (see post of January 29), is up but not showy. Hopefully, it will survive tonight's forecast snowstorm (yes, really, on April 11) and continue to open up.

Those are some photos and some memories. Thanks to all of you who send prayers, healing thoughts, good wishes and reminders to listen to my body. I'm doing my best to take it slow and let the chemo do its work. I do hope I'm on the upswing energy-wise until the next infusion. This week has been tough.

A Short Post on Fatigue . .. O__/___/\_

So, that's me, reclining, which is all I seem to feel like doing these days. This last round of chemo has knocked me for a loop, and after being upright for a little bit, I just want to lay down. The oncologist and the oncology nurse both assure me this is within the range of normal, that the new chemo drugs are very strong and can knock out your blood cells, leaving me tired and listless.

If I don't start to feel peppier by the end of the week, they will draw blood, see if I'm anemic, and if I am, do an infusion. So, there's a plan.

In the meantime, I'm staying home from work, too tired to imagine getting myself to work and then teaching, and my very supportive colleagues, Mary, Graham and Chris, are covering my classes.

Life goes on, but I'm living it in a prone position for the moment!

Fatigue . . . and other side effects

I'm tired, bone tired, today, and I'm sure it's the chemo and nothing more. The chemo nurse told me that a few days post infusion I might feel "flu-like symptoms," aches and pains like the flu. I don't feel achy, but I've felt increasingly tired and sleepy yesterday and today. I don't feel like moving, but resting doesn't really revive me, either. I remember Leroy, in his blog last fall, referring to a tiredness, a fatigue, that no sleep can resolve. I didn't feel that degree of tiredness during my first chemo regimen, but I surely am now.

The good news? Unlike with the first chemo regimen, I can drink cold beverages, a great relief, and stay hydrated more easily. My appetite is marginally better, and I feel less vague nausea. Don't know how that will change when I stop taking the steroids, but I guess the danger of nausea and vomiting is greatest for the first three days.

The other good news? We went mattress shopping this afternoon, to replace our 10 1/2 year old mattress, and it was a good shopping to do when you just want to lay down! I checked out the mattresses and Patty talked with the sales guy. I've seen the chiropractor the last few weeks for a sore spot in my back, and this week he asked me how old our mattress was. I had to confess that we bought a new TV and a trip to St. John before the mattress! At the store, they weren't busy, so it wasn't difficult to make a decision, and we will have our new mattress and a new twin mattress for Nathaniel's bottom bunk delivered next week. Resting on the job, mission accomplished!

Thinking about your comments this week, I wanted you to know that I love the suggestion of the tumor "melting, melting!" like the Wicked Witch of the West in Wizard of Oz, and even incorporated it with a new visualization that came to me. In it, the tumor shifts from being the fierce Portuguese Man-o-war I've seen since this new tumor invaded my insides, to a jellyfish blob like we see on Cape Cod beaches later in summer. Those clear jelly blobs easily dissolve in the sunlight on the beach, so this one is doing that, and melting!

I loved the music and suggestions for "Shrink that Tumor!" Lucy made up a cheer, but she can't remember the words from day to day. They are always entertaining, though, and I try to get her to chant it at least once a day. Any other rhythm or song suggestions still accepted!

And about my post on mortality this Holy Week, I was deeply moved by the sharing of those of you who resonated with what I had to say, and who could find words to articulate your own journey. Your stories and reflections enrich us all.

The waiting for Easter is almost over. May your day tomorrow be full of celebration and joy, family and friends, love and sunshine, and the wonder of life renewed.

Some Thoughts about Mortality for Holy Week

Before I share my thoughts on this topic, I want to reassure you that I'm not feeling gloomy or sad today, and in fact, I've had a little "steroid energy buzz" that led me to sort through some clothes in the closet to give away. I'm about ready for a nap, so it's not an excessive buzz, but except for nausea and vomiting first thing this morning, I'm feeling good. But this post isn't about my physical state; I just wanted to provide that reassurance.

On the Christian calendar, Holy Week marks the last days of Jesus' life on earth, including Maundy Thursday (today) which commemorates the Last Supper, and Good Friday when we remember the crucifixion. Then, the joyous day of resurrection is celebrated on Easter. Easter is an upbeat holiday, both spiritually and secularly, and so many of us love to celebrate Easter, but may skip over the more serious days leading up to it. But these days of Holy Week are somber and call for inner reflection. Since I've been doing a lot of that over past months, it fits my state of mind to think about mortality during Holy Week.

From a book of daily readings by Madeline L'Engle that I treasure comes this poem, which I read on Monday of this week before meditation.

From St. Luke's Hospital (2)

If I can learn a little how to die,
To die while body, mind, and spirit still
Move in their triune dance of unity,
To die while living, dying I'll fulfill
The purpose of the finite in infinity.
If God will help me learn to die today,
Today in time I'll touch eternity,
And dying, thus will live within God's Way.
If I can free myself from self's iron bands,
Free from myself not by myself, but through
Christ's presence in this simple room, in hands
Outstretched in holy friendship, then, born new
In death, truth will outlive the deathly lie,
And in love's light I will be taught to die."

(from Madeline L'Engle, Glimpses of Grace, p. 80)

"To die while living, dying I'll fulfill / The purpose of the finite in infinity." What is the purpose of our short finite lives, spiritually and philosophically speaking? Our purpose along a stream of time that goes back farther than we can imagine and into the future over time we can't conceive of? We can so easily got caught in thinking that life is meant to be easy, to be happy, to be successful (however we define that). But what if life is about none of those things, really?

During Lent, about fifteen of us from church have been meeting in a book discussion group to talk about the book "Learning to Fall: The Blessings of an Imperfect Life," which I've linked to almost from the beginning of my blog. In our discussions, I've talked with the group about my experience since the diagnosis of gallbladder cancer of taking on my mortality, and wondering about the purpose of life. That has included wondering whether or not we humans may be just plain wrong about why we are here. It's a heavy notion, it's difficult to articulate. In his book, Simmons comments on this idea, in a wonderful chapter entitled "Mud Season:"

"Before my illness I, like everyone, had always spent much my time in the mud, only I didn't know to value it. Mud seemed only to block my way. I had spent my life in pursuit of knowledge and happiness, only to find out that both were overrated. For what is knowledge without faith, and what is happiness without sorrow? The path to resurrection lies through the mud because only through pain and sorrow do we grasp the necessary truth offered in the Ninetieth Psalm" [which he quotes from, but I won't; it's about our mortality].

On a much lighter note, the question makes me think of the greeting card sold in alternative stores that says "What IF the hokey pokey is what it's all about?"

I have no answers these questions, or solutions to my ponderings. I do think that life is much more complex and mysterious than many/most of us think, and certainly than I have thought most of my life. We so easily look in all of the wrong places for what will be most deeply fulfilling, and then feel surprised when we are still unsatisfied. In the last 10+ months, I have made quite a few changes to my life, in response to my diagnosis, my energy, and my shifted sense of priorities. I still miss some of the things I used to find quite satisfying, and I'm also finding a new sense of peace with this slower pace, with more time for contemplation, and for the opportunity to connect with others that my disease, and this blog, have provided.

Holy Week offers us the chance to think about our mortality, and how we live our lives. Whether or not you identify as a Christian, the fact that this one man chose to give his life for others, and then, in his resurrection, founded a whole new religious faith based on love of neighbor and God, is a powerful teaching. In the stories of his last days, we hear the human Jesus struggling with his destiny. Since my diagnosis, I have resonated many times with these words of Jesus, spoken in Gethsemane on the night before he died, "My Father, if is possible, may this cup be taken from me, yet not as I will, but as you will." So many times in these months I have wished not to be sick, not to have gallbladder cancer, not to have a terminal diagnosis. Slowly, I have come, if not to fully accept this diagnosis, at least to accept that this is the hand dealt now, and my choice is how I deal with it.

May the deep lessons of Holy Week touch you this year as they have me, and may you find, emerging from the mud of this somber week, that Easter is especially joyous.

"Shrink That Tumor!" - New Chemo Regimen

I had my infusions of the two new chemo drugs today, and tonight I'm doing okay. In fact, I feel better than I have after the previous three infusions (of oxaliplatin), and I was worried about feeling worse because there were two drugs instead of one. I found out that the decadron they infuse as an anti-nausea med is a steroid, and some folks get a bit of a buzz from the drug. I definitely didn't notice any such thing the other times! Since the new chemos are more likely to cause nausea, I also have some decadron to take orally over the next few days.

We had a long day in Boston, arriving around 10:00 to have blood drawn and a urine sample taken. My urine had been discolored, and I wanted to have them check for bilirubin in my urine. (This would not be a good thing, because it would mean that the tumor is messing with my bypass that delivers the bile from my liver.) They lost the first sample, and I gave them another one later, and the final word was no bilirubin in my urine. Good news. The color was blood (from the stent) and there was no sign of infection.

My bloodwork was good, and we moved toward the infusions, but it was 12:30 before they began. I had infusions first of cisplatin, and then the Gemzar (gemcitabine). The second drug is more likely to cause soreness in the arm. Despite that, I handled the chemo into my arm pretty well. Since my port appointment for this past Monday was cancelled, I have rescheduled. More details below!

We were finally finished with the infusions at 4:00, and then I saw Dr. J, the oncologist. He says that this chemo regimen is more likely to mess with my blood counts, so rather than an infusion every week for two weeks, with a week off, he's suggesting two weeks between infusions, with only the gemcitabine on the mid-infusion.

In two weeks, then, on April 20, I'll go for an infusion of the gemcitabine, and that afternoon, I have an appointment to have the port surgically placed by my favorite surgeon, Dr. M! It will be a long day, but we'll have taken care of the port finally.

I have coverage for tomorrow's classes, so I can stay home and sit in my favorite chair, which tends to be all I feel like doing the day after chemo. And if I have some extra energy, I'll grade some of those overdue papers!

At the end of this long day, I realized how much we need to shrink that tumor so that I can worry a bit less about my innards, and gain more time feeling good and able to live my life. So - new motto - "Shrink That Tumor!" No more messing around - We want you out of there! If any of you think of a good song, or hip-hop rhythm to go with the sentiment, pass it on! Thanks as always to those of you who read and respond and send loving, healing energy.

Images from St. John - Vacation!

Ah,, St. John! Warm days, pleasant nights, lots of sun and warm water. . .

These photos aren't in any particular order, as downloading them in order is more challenging than it should be. . . .

There was live music many nights at the pavilion at the campground. Here the steel drummer showed Lucy, Nathaniel , Judy, and Patty how the drum works.

On the top right, Lucy and I are standing at Ram's Head, a beautiful cliff arrived at by a one mile (HOT) hike. The view, as you can see, is stupendous from the cliff, and we were glad to have made the hike. You can also see that the southern part of the island is drier and has cactus growing!

Below is Lucy drinking the coconut milk from a coconut (okay, we bought it at the local supermarket!), which was one of her goals for the trip.

Lucy and Nathaniel made friends with twins from Canada, Eric and Adrianna (and it turned out they had played together six years ago, too!), and they all had a great time with this half-broken air mattress.









One tradition on St. John is to drive down island to Vie's Chicken Shack and get her garlic fried chicken. Or, if she's out of chicken for the day (which can happen easily), you can eat conch fritters, meat sauce over beans and rice, or a hot dog (Nathaniel's choice). The food was good, and it was fun to drive across the island to her shack.






When we walked to Cinnamon Bay Beach from our campsite, we walked a path that emerged like this onto the beach - beautiful!


When we drove our friend Judy, who vacationed with us, to the ferry, we took a few pictures at this scenic site.

Photos from vacation! Next post on other matters, although there's no news since Friday. Stay tuned!

Medical Developments this Week

Where to begin? It's been quite a week in the medical department, and I haven't posted because I wanted to have something more concrete to say.

It started Tuesday, when Patty called Dr J, the oncologist's, office to see about my latest CA 19-9 numbers; they always take a few days more than the other bloodwork. So, here's the bad news; my numbers had tripled! From around 768 on March 6, my numbers had climbed to 2,099. Ouch! So, we were worried, and the doctor was concerned about getting a fuller picture. He and I hadn't met face to face since February, and he wanted me to come into the office this week. I made an appointment for this morning, and his nurse, Sue, also let us know that they would cancel the port appointment until we had a plan for moving ahead.

We met with Dr J this morning, and I told him I'd done okay since the infusion last week. My biggest complaints are still lack of appetite, nausea, fatigue, and this week, constipation. The implant - spot - in my side has been sore, and feels bigger and harder, which is really, really worrisome. If that tumor is growing, what's happening inside? As we talked about my side effects, and our vacation, Dr. J commented that I'm very positive about everything . . . He also said that he's concerned that the current chemo regimen is not working. (I share that concern.)

He presented us with a few options. The first was to try a pill that's a biologic agent, called sorafanib. Some folks get good results, but it can take a few weeks to kick in. The second was to shift chemo drugs to a combination of gemcitabine (Gemzar) and cisplatin. They are both delivered by infusion, so no pills. There have been more studies of these two drugs with
gallbladder cancer, and some folks have had good response to them. The third option was a less aggressive chemo drug, taxotere.

Because I've been concerned about the tumor growing, I wanted to go for the most aggressive treatment, which is the two-drug chemo combination. So, we're going to do an infusion next Wednesday (both drugs), and then again the following week (just cisplatin), then a week off. Somewhere in there, I'll have the port put in, since the Gemzar is difficult for veins to tolerate. I just have to wait to get a new appointment. Have I mentioned that I am powerfully tired of doctor and hospital visits?

My head is spinning a bit tonight with the intensity and all of the changes in plan over the last few days, but the new treatment feels right. I don't want to give either of the tumors any more time to grow than they've already had! Thanks for your continued prayers, good wishes, and, from some of you close by, soup deliveries! It means so much to feel that ongoing support and love as we continue this cancer ride.

Ten Months and Still Here! The Winter Tumor.

This past Saturday, March 24, marked ten months since the major surgery that revealed that I have gallbladder cancer. The diagnosis sounded like a death sentence . . . rare, incurable cancer . . . many folks live only two to six months post diagnosis . . . we don't know how your disease will progress . . . stage IV cancer, with "distant" metastasis . . . if you take this trip to the southwest you need to watch out for a recurrence of jaundice, for other evidence of spread of the disease and seek treatment immediately . . . yes, it would be a good idea to know where the closest hospital is as you travel . . .

Those were some of the conversations we had with my medical providers. Ultimately, they didn't tell us not to take the trip, and they didn't give us any compelling reasons why we should stay home. I couldn't begin chemo for at least a month following the surgery, so we were only potentially delaying beginning treatment by two weeks. Then, surprise! We returned from our trip, I had no signs of jaundice, was clearly recovering well from the surgery, and the CT scan showed no progression of disease. That was the beginning of what proved to be 8 months of being asymptomatic (except for that pesky spot in my abdomen that was removed surgically in December, and was an implant, grown from cells accidentally deposited as they removed my cancerous gallbladder).

And now I know, and know of, folks who are 18 month post diagnosis and doing well, and folks with even more time who continue to fight the cholangiocarcinoma, and to experience a good quality of life. As spring begins to stir here in Massachusetts, I find my desire to fight the disease is strengthened. Why not order those bulbs to plant in the yard in May and watch them bloom over the summer? Why not expect to be here in a year to watch yet another spring arrive? (Well, writing "expect" reminds me of the warning to have "abundant expectancy, but not expectations;" see my post of December 11) But why not have hope and imagination and faith in my body's ongoing ability to fight this disease?

Last summer when I was first diagnosed, my friend Bev was the one who said to me, tearfully, "You need another spring, you deserve another spring." This can't be happening, and the disease can't take you that fast, was the heart of her point. She and I both love to garden, and sharing our growing stories and cuttings and plants has been a special joy in our relationship. I knew what she meant. With the coming of this spring, I feel a renewal of that determination.

With the arrival of spring, I also feel I'm beginning to emerge from the "shell shock" of the sudden appearance of this dangerous tumor in my abdomen, visible in January's scan. I thought after 8 months that anything growing would be a little slower to be dangerous, yet this came on like gangbusters, threatening the functioning of vital organs, and, honestly, scaring me to death. It was a winter tumor, and it should vanish now that spring is here!

Something Leroy wrote in his blog before we left on vacation has really stuck with me, and seemed to articulate some of the changes I've experienced internally since the initial panic and anxiety about my life threatening diagnosis. On March 8, this is what Leroy had to say:

"I still stand by what I said earlier. I'm not ready to die. At the same time, when my cancer came at me again, I did finally come to peace with the process. After all, I feel that I have lived a decent life. But there is a big difference between coming to grips with your own death and giving up on life. I don't think any of us ever give up. Even when the time may come that we choose to end treatment, that's not giving up. That's making a choice."

"A big difference between coming to grips with your own death and giving up on life." Those were words I needed to hear last summer when I was dealing with the intensity of my diagnosis. So, I'm grateful to Leroy for saying the words I still needed to hear, for putting words on my experience. I feel that these last months have been about coming to grips with my own death, recognizing that it's likely to come sooner than I ever expected, while still not giving up on life. There's so much I want to do, and see, and write, and be, before my life comes to an end.

Let's hope that this winter tumor shrinks in the face of the chemo, and gives me even more time than I could have imagined last summer.

Peace Prayer of St. Francis of Assisi

Since my diagnosis of gallbladder cancer, I have found that I have been drawn to the prayer commonly known as the Peace Prayer of St. Francis of Assisi. While he was born in 1182, the prayer itself didn't appear in printed form until 1912, so it seems likely he didn't author it. Still, it has such a powerful message, I'm not surprised that it is so popular. Here's the prayer:

Lord, make me an instrument of your peace,
Where there is hatred, let me sow love;
where there is injury, pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
where there is sadness, joy;

O Divine Master, grant that I may not so much seek to be consoled as to console;
to be understood as to understand;
to be loved as to love.

For it is in giving that we receive;
it is in pardoning that we are pardoned;
and it is in dying that we are born to eternal life.

I so appreciate how the words turn around our normal expectations about the way to live and be happy, and to thrive. We can think that the meaning of life, having a full life, is all about us and getting what we want and believe we need, when often life is most deeply about reaching past ourselves to see how we all are connected and need each other. The words feel very healing to me.

Brugh Joy, in a workshop I attended, told a story about St. Francis that spoke deeply to me. Francis was born to wealth, and, while he wasn't always happy to be wealthy, he avoided unpleasant situations and people for much of his young life. But God was speaking to him, and at some point, he realized that he needed to do what he most feared. Brugh saw this as an example of a person challenging his shadow, that disowned part of ourselves, by doing the thing we most fear, by facing the thing that most challenges us. So, the story goes, Francis sought out a leper, whom he feared, knowing that the disease was highly contagious, and he put his hand into the wounds of the leper. In doing so, he faced his deepest fear and found himself transformed. After that, he was not the same man. Brugh used this story to illustrate how we can be transformed by facing our fears and doing the thing we fear the most. While I have no illusions that I'm like St. Francis, dealing with cancer, having a life threatening diagnosis, and being faced very powerfully with my mortality has certainly required me to face some of my deepest fears. And I'm still struggling with all of it . . .

For Christmas last year, I asked Patty to give me a mobius bracelet of the St. Francis Prayer. (A mobius bracelet has no beginning and no end, because a twist in the metal keeps the circle - and the words - going; see illustration at top of this post.) I had discovered them for sale on Healing Baskets, a website that sells custom made baskets for folks who are sick, including those with cancer. My friend Mary sent me a basket last summer, and it was filled with special wonderful items to heal and soothe and support (bath salts, a pad to warm in the microwave, ginger candy, and so on), and when I ordered a basket for a friend last fall, I discovered the mobius bracelet with the St. Francis Prayer. I like silver anyway, and the silver bracelet is just $75.00. So Patty gave it to me, and I've worn it most of the time since Christmas (except when we were in St. John, because I didn't want to worry about losing it).

Wearing the bracelet, having the first part of the prayer there and available to read through and meditate on is a wonderful soothing exercise. I love the prayer, I love my bracelet, and when my illness has me really down and worried, I feel better remembering the prayer.

Day Two of New Chemo Cycle

I'm doing much better so far with this chemo cycle, and felt much better yesterday following the oxaliplatin infusion yesterday, and beginning the two weeks of Xeloda tablets.

The chemo nurse, Linda, sensed my anxiety when I arrived, and we talked about what happened last time, my worries that I would leave again feeling so awful I could barely walk, and my concerns about the lingering side effects. Dr. J, the oncologist, called from Wyoming, where he was lecturing to medical students, and updated me on the details of the changes in my chemo regimen. He ordered a calcium/magnesium infusion before and after the oxaliplatin, because it seems to offset the impact of the drug on nerves (neuropathy), and that did seem to make a big difference yesterday. He also reduced the oxaliplatin dose by 20%, and the Xeloda dose by 33%, so I'll be having a bit less of both chemos through this cycle.

When I left, my legs weren't hurting, as they were last time, and I didn't have numbness in the back of my throat. And today I don't have as strong a sense of my body just being completely out of whack as I did. I did still have trouble with pain in my arm when the infusion was about 3/4 complete, so I asked Linda to stop it. So, we stopped using the one arm and went to the other, and went to a larger vein in my arm, near my elbow for the end of the infusion. Linda was upset because she thinks that the oxaliplatin is just too tough for arm veins to tolerate, and that they should establish a policy that everyone receiving the drug has a port.

Anyway, after going to a second vein yesterday and having everything slowed down as a result, I'm ready for a port. Linda must have ordered it right away, because I got a phone call from the "line coordinator" soon after I got home, and I have an appointment to have it inserted on Monday, April 2, with my appointment beginning at 6:00 in the morning (Yeow!). Since I don't want to do another infusion without a port, I'm glad we have a plan. The port is inserted surgically in the chest below the collarbone, and provides easy access for the chemo infusion. And because this is a larger vein, the soreness with arm infusions just isn't an issue.

I also had a good conversation with Linda about my problems eating and my lack of appetite. After talking with her, I feel as if my problems have been normalized. Lots of people with various forms of chemo have lack of appetite, food tasting funny, decreasing appetite as the day progresses, and other odd things about eating, it seems. We talked about drinking as much as I can so as not to get dehydrated, about eating frequently, expecting to be able to eat less at a time than I used to, and just dealing with what is but eating as much as I can. I've lost 15 pounds or so in the last two months (some of it due to the stomach virus), and Linda said I need to stop losing weight and regain at least some of it. So, I feel normalized in my experience and challenged to keep getting more nutrition into me. She also gave me a book with recipes especially attractive to and useful for patients on chemo. It has lots of soup recipes, which I'll have to try when I have energy. I've been realizing that liquid food like soup tastes especially good to me.

On the subject of losing weight, I had something very funny happen to me while teaching on Thursday. I was wearing a pair of my favorite stretch corduroy pants, which are very comfortable, and I'd walked from the train station to my office without incident. However, when I was teaching, talking, and raising my arms to write a lot on the board, I began to realize that my pants were beginning to fall down. I slipped behind the big media center and hiked them up, and then found I had to do that repeatedly. Fortunately, they didn't end up around my ankles, which would have been beyond embarrassing, but it was a struggle to focus on my lecture, answer student questions, and keep up my too-loose pants!

So, that's my medical update and my medical state for today. It's a relief to feel more normal than I did last time.

This week was hard, with a need to focus intensely on work before I felt rested from traveling, and with my anticipatory anxiety about yesterday's chemo. So, I'm glad to be on the other side of all of that, able to nap today and tomorrow, and ready to get back into the rhythm of our daily routines. My continuing thanks to all of you who read this and follow my journey, and who post your words of love, support, and humor!

Home

We've been home since late Monday night (a day and a half ago), and Patty and I are back at work, and the kids back at school. Our trip was wonderful, and so relaxing that I didn't even compose any blog entries in my mind! Things have been busy since our return, with unpacking and work, so I've been waiting for inspiration on posting. What a delight it was to return and read all of the comments after my last post before we left. I felt well supported and prayed for! I haven't downloaded any pictures from our vacation, but should have some ready by my next post.

While we were away, we swam, snorkeled, sat (or played) on the beach, and generally relaxed. It was wonderful to be away, and to put down all of the details of daily life. Since we were camping, we went to bed early, and read for a while in our tent, and got up with the sun in the morning.

Since we were camping, we had a few camping challenges. The sand fleas and mosquitoes really LOVED Nathaniel and Lucy, and we had some nights with lots of complaining about itchiness and trouble sleeping. We finally figured out how to spray the insect repellent around the tent, tie all of the little ribbons (no zippers in this tent!), and minimize the bugs. And, we had a resident lizard in our tent. We kept encouraging it to eat lots of fleas and mosquitoes, but it had trouble keeping up with the volume.

The beauty of camping at Cinnamon Bay Campground in St. John, USVI, is that the beach was just minutes from our tent. We could roll out of bed and check the water, go for an early swim, stake out some shady territory on the beach, and go back to our site for breakfast. We visited some other beaches and did some hiking, but the kids like staying put once they had made friends, and so we stayed close to the tent many days.

How have I been feeling? Not as good as I would like. I still feel side effects from the oxaliplatin, especially cold sensitivity (but not to cold foods). The warm Caribbean water gave me goose bumps, but fortunately, we had bought a wet suit for me, so I could snorkel without freezing. When I took my cold shower (they don't heat the water at the campground), I was the only one yelping through the cold water as I quickly showered. And the appetite thing really has not improved. My appetite is best in the morning, and diminishes as the day progress. Some days, I can't eat any dinner, although I did discover that baked potatoes sit well. I thought my appetite would return this long after my last infusion, and I could regain some of the weight I've lost. One fun thing about being in the Caribbean is that it was easy to buy Ginger Beer (non-alcoholic), which was zingy and gingery, and tastes like the ginger drink that Tia described how to make in a comment a few posts back. Yummy!

This Friday, I go for my next infusion, and I've had conversations with the oncology nurse, and others about the side effects I'm still feeling. I just hope that means the chemo drugs are still working against the tumors, and that the tumors have not taken advantage of this vacation to grow!

So, pictures and more information soon. For now, back to work!

I Didn't Know I was Worried . . .

This really is my last post before we depart for vacation. Honest!

I finally talked with my doctors today, and after talking with the urologist, Dr. D, I realized I was worried about the stent keeping things flowing between my kidney and bladder. Yes, Dr. M told me Monday that the kidney looked better, and I thought the kidney looked better, but it still didn't look normal, and I knew from the urologist that if this stent didn't work, the next step would be more drastic. They would create a stent in my back into the kidney, and the urine would drain into a bag, completely bypassing the ureter and bladder (for that kidney, but not the other one). I really don't want that kind of stent! I would do it if it meant keeping the kidney, but I really don't want it . . . It's not as if this stent is great. Sometimes I feel it, and it's uncomfortable. But if it's working, that's good.

So, when Dr. D looked at the scan today and said the kidney looked better, despite the failure of the urine to drain completely, I was relieved. He also said that when the stent is replaced (which they plan to do each three months), he could put one in with a slightly larger diameter, to help drainage. He had a plan, he wasn't worried, and I was relieved.

Later today, I talked with the oncologist, Dr. J. He listened to my story of side effects, and proposed that we cut the dose of both of the chemo drugs. He suggested we try that before going with a port. "Why have the additional procedure if you don't need it, and the lower dose gives you fewer side effects?" he asked. I had to agree that fewer procedures sounded good. So, a lower dose of the oxaliplatin to help with the exhaustion, funny numbness in the back of my throat, and tight muscles in my calves that I experienced last time. A lower dose of the Xeloda to help avoid hand-foot syndrome. I'll go for my next chemo treatment on the Friday after we get back.

For now, I'm on a chemo holiday, and feeling more like myself with each day that passes. Yea! You all have wished me bon voyage, and have a great trip many times over, and I appreciate that. I did think, while meditating this morning, that I also wanted to ask for continued prayers and healing energy. Please don't stop! I feel the support, and the prayers, and the positive energy, and it sustains and nourishes me when things are tough.

That's it for now!