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!

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!

Rough Afternoon & Evening

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

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

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

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

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

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.

Living with the contradictions of chemotherapy

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

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

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

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

So here's the contradiction of my chemo:

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

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

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

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

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

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