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.

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.

Stamina-less!

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

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

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

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

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

Musings, Mary Oliver, and Chemo Brain

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

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

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

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

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

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

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

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

from her book New and Selected Poems, Vol. One

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