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!

In The Chemo Room

I have been drafting this post since my last chemotherapy, almost three weeks ago. Before I head off for this much-anticipated vacation, I figure I should post it. When we return, I'll be anticipating another round of chemo, and the information will likely change. So, for those of you wondering if I haven't left yet, the answer is "not yet," but in two days. And thanks for all of the warm wishes and good thoughts following my last post.

Some of you reading this blog know more about receiving chemo treatments than I do, but lots of you who know me have asked me questions about receiving chemo, what it's like, what happens, what the two different chemos are like, etc. So, I thought I would share a few of the details I've observed and experience in my two rounds. Those of you who have been there, feel free to comment on your own experiences!

In addition, I'm remembering that Leroy (of Leroy's blog at NPR) was interviewed and filmed in the chemo room for a special scheduled to appear this spring on TV. Last December, he had a fellow journalist write in his blog about her observations in the Chemo Room, and those are worth reading if you have no prior experience. The documentary will be on Discovery Channel, and whenever it will be, I should get a heads-up from Leroy's blog, and I can mention its air date when I learn of it.

The Chemo Room at Beth Israel Deaconness, where I go for chemo, is a great big room with a nurse's station in the center, and chairs that can recline all around the outside wall. Most of the chairs can be curtained off, if need be, although I haven't felt the need, and so I've been able to observe lots of other folks receiving their chemo treatment who are also not behind curtains. As Elissa Rubin, the journalist mentioned above, notes, folks are dressed in street clothes. I would guess the only reason to be in a hospital jonny would be because you were already admitted to the hospital. Some folks even dress up for the trip to this hospital, reminding me of my favorite aunt, Win, who still loved to dress up and wear a stylish hat when flying on airplanes before she died early in this decade.

The session starts with checking in with the chemo nurse, Linda, and possibly the oncology nurse, Sue, who may come by. This last time I talked with Linda about slowing things down from the first session (where the infusion took about 2 hours), and she agreed. She put the IV in, and gave me decadron IV (anti-nausea med), then benadryl (because I'd had a hive during the first session), and she brings me a pill of anti-nausea med, whose name we can't remember. When it's time to actually begin the infusion of oxaliplatin, the chemo nurse and one other person come together to confirm the dose and medication and that I'm the patient it's designed for. This last session, they did slow down the infusion, and I think it took more like 3 hours. But I think it was still too fast, given how I felt after. But I get ahead of myself.

Patty and I bring along a bag of snacks and things to do, but there are also volunteers coming around offering food. Does that seem strange, that someone would eat during chemo? I thought so, at first, but then found that snacks and a lunch tasted pretty good during the time I was sitting there (having already been pumped with anti-nausea meds). After lunch, they came by offering ice cream, and I remembered readily that eating ice cream would not be a good idea, so both Patty and I declined. I find that I like listening to music with my iPod, sometimes I'll pick up a good book (if i have one), sometimes Patty and I will chat, especially at the beginning. And I watch people, the others in the chemo room with me.

On my last visit to the chemo room, there was one man who seemed to be dozing through his infusion (I was envious - Does that make it go faster?), one woman who came in to receive platelets (they were very yellow, and Patty could read the bag), and another woman who received transfusions, two, of blood, while she was there (the blood was easy to spot from across the room, with the big "O" on the bag). Sitting next to me was a man receiving oxaliplatin also, plus one or two other drugs. He looked like an old hand at this, and had a port in his chest for the infusion. (A port is inserted as day surgery, separate from the chemo, and means that when something needs to be inserted (chemo drugs) or withdrawn (blood), a new IV doesn't need to be started in the arms or hands. Apparently a lot of folks have trouble with their veins, and I have also heard that the port can ease the infusion. Since I had a rough round with infusion #2, I will be learning more about that.)

So what happened during the second infusion? I guess it was just too much, too fast, and somehow my body couldn't tolerate it well. I've already written about how I came home and spent the rest of the day in bed, and also about talking with Sue last week about the possibility of doing some things to make it easier next time.

I still haven't touched base with the oncologist about the next infusion and whether or not to do a port (I'm leaning toward yes), and with the urologist about the stent. But my CT scan pictures did arrive by FedEx yesterday, so I got to see for myself. I could see those funny little plastic loops at either end of the stent, and that my kidney looked less swollen than last time. I feel that I'm heading to vacation feeling about as good about my current state as I can. And after vacation, stay tuned for updates on future chemotherapy!

So Far, So Good - No Sign of Cancer Spread

This morning was my long-awaited CT scan to see if the tumors are responding to the chemotherapy. Patty came with me, as I'm still feeling less than my usual self following the stomach virus, and a lot of the morning was uneventful . . . banana flavored barium, CT scan, request for DVD of the scan, blood drawn, waiting for the DVD of the scan, only to be told that their DVD burning machine was broken. So, I came home without the pictures, which was frustrating.

But this afternoon, as promised, Dr. M called, with a draft of the radiologist report and his own reading of the scan. The radiologist thinks things look the same; Dr. M thinks the tumor in my abdomen may be slightly smaller. In any event, it's not larger, which suggests that the chemo is having an impact. With gallbladder cancer, it's not unusual for a response to be modest. These drugs were developed for other cancers, and the doctors are just trying them out on those of us with this rare - "exotic" - cancer. Dr. M said that the stent seems to have relieved some of the backup in my kidney, but that the kidney wasn't completely normal.

Of course I would have rather heard that the tumor had vanished, but this is at least modestly good news. And with this news we'll head out of town on Friday, ready for this much anticipated vacation!

Appetite

Not having had an appetite for much of the last six weeks (chemotherapy), but especially the last three days (stomach virus), I woke up during the night thinking about appetite, and writing a post on the subject. Also, I was talking with Tia last night, and we were commiserating about the lack of appetite, and how hard it is to eat when nothing tastes good.

Where does our appetite come from? Most basically, it's an element essential to human survival, ensuring that we get the food and beverage needed to sustain life. Why does appetite change? Illness, certainly, and as so many of us know, the treatment for cancer known as chemotherapy. With so many of us in the U.S. struggling to keep our weight under control, when faced with a dizzying array of possible, delectable things to eat and drink, it's a bit strange to be thinking about appetite and lack of it. But for those of us with cancer, and those of us undergoing chemotherapy, lack of appetite is very real. It's not just nausea, although that's part of it, it's that even when we eat, things just don't taste that good.

For most of my life, I have loved to eat. I love the smell, texture, taste of food, and I enjoy cooking and baking. My first extended period of detachment from the joy of eating came in 1995 when I contracted dengue fever after a church mission trip to Nicaragua. (At least I assume I had dengue fever, although it was never confirmed by a lab.) Fever, nausea, vomiting, diarrhea, lots of the same symptoms of a stomach virus, but it just didn't quit. I was pretty sick for three weeks, and got better only slowly. As I recovered, I found I was only interested in "white food" - potatoes, pasta, bread, bland food. I would watch others eating, and would remember, distantly, enjoying eating, looking forward to meals. It took a long time for my previous relationship with food to return. My experience with chemotherapy is more like that experience with food and lack of appetite than any other I've had.

In researching this post, I learned that there is a scientific journal called Appetite. The research areas for publication cover a wide range of topics, including "behavioural nutrition and the cultural, sensory, and physiological influences on choices and intakes of foods and drinks. It covers normal and disordered eating and drinking, dietary attitudes and practices and all aspects of the bases of human and animal behaviour toward food." Who knew scientists were interested in all of those things? Clearly, anything I can say on the topic is very limited!

There's also a book about food and eating called Appetite, by Nigel Slater. He reflects on our relationships with food and food preparation, and also seems to include some recipes. I never heard of this book before, but it sounds interesting. However, in the table of contents, there is no mention of "chemotherapy" and appetite. So, that's no help!

So what can those of us on chemotherapy do about our lack of appetite? Doctors can give us anti-nausea meds (and they do), and I guess there are even drugs to stimulate appetite (I heard a doctor prescribing some to the person next to me in the chemo room). But I'd like to stimulate my appetite without drugs, and make sure that I am getting the nutrition I need to support my body's functioning and fight against this cancer that endangers my existence.

One book that specifically focuses on what those with cancer can do about loss of appetite is Return to Wholeness by David Simon. He's an M.D. with an ayurvedic perspective, so he talks about a drink to stimulate appetite (equal parts gingerroot juice, lemon juice, honey, and water with a pinch of black pepper; how do I squeeze juice from gingerroot?), and some natural ayurvedic shakes and soups. I remember reading this section of the book last fall, when my appetite was normal, and thinking I probably wouldn't need his suggestions. Was I ever wrong! Now that I've rediscovered it, I need to try some of his ideas.

I began this post this morning, and now I'm ready to put it on the blog. Over these hours, I've experimented with trying to eat more. I woke up thinking about homemade blueberry muffins, so I made them. They were good, but didn't taste quite right. Then I tried a half-banana, a drinkable yogurt, and some reheated mashed potatoes. (I decided to return to the "white food" approach to diet!) So far, so good. Thanks for reading my ramblings on this topic!

A New Month on the Calendar

It's March! When the calendar turns to this month, spring is on the way. So what if snow is forecast for tonight, the end of winter is in view! A new month for me also means a new month of surviving, and thriving, despite the cancer and the chemotherapy. Last weekend I officially passed 9 months since diagnosis. Last summer, after my diagnosis of gallbladder cancer, I was hoping I'd live to see another spring, but I had no idea what state I'd be in when spring arrived.

This last day has left me dealing with more mundane health issues. I have a stomach virus, most likely the norovirus. Nausea, vomiting, diarrhea, the whole picture. The "good" news, in a mixed up way, is that Patty got it first, a few nights ago, so when it happened to me, I didn't think it was a side effect of the chemo. I just assumed I had a stomach virus. Even the Boston Globe had an article today about how widespread the virus is in the area.

For those of you who worry about me, yes, I am staying hydrated. Lots of flat gingerale, and a little chicken broth, a few crackers, half a banana, some water. And yes, I did call the oncology nurse today to touch base with her about how I was feeling and what I should do. She told me not to worry about lingering symptoms unless they continue into tomorrow. I've spent the day in bed, warm and snuggly, napping, reading, napping some more. And visiting the bathroom a lot.

So, it's a new month, and a week from tomorrow we get into an airplane to fly to St. Thomas, USVI, and then a ferry to St. John for 10 days. Every bright day with blue skies reminds me of the warm, sunny weather there, and all of the sunshine oriented things we will be doing. Every cell in my body is eager to soak up the warmth and the Vitamin D (except you bad cancer cells; no warmth or vitamins for you!) I guess it's pretty clear that I'm really, really looking forward to this vacation.

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!