"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.

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!

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!

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!

Good News on the Chemo Front

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

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

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

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

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

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

Oxaliplatin & Oxalis - Day 7 of this cycle

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

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

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

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

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

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 . . .