When I saw my oncologist last Thursday, he decided to take me off oxalyplatin, one of three chemo agents I've been getting, because my neuropathy--numbness in both feet and hands--has been getting significantly worse. In truth, it had occurred to me to cry "uncle" to him, not just because of the neuropathy, but because it's been taking me longer and longer to bounce back from each chemo treatment. But all I had to say was that I'd been dropping things (like half a can of Coke in a hospital elevator--what a mess!) and having a little trouble with zippers, and that was enough for him to decide to keep me on the leucovorin and 5FU, but take me off the oxalyplatin, which is what causes the neuropathy. The problem is that the neuropathy can become permanent, if it goes on too long. Not a pleasant prospect.
Of course, this is a two-edged sword, because the oxalyplatin has clearly been working on the tumors. "Well," Dr. Holen said, "we don't know that for sure. Maybe it's the leucovorin and 5 FU that's been working." Right. But if I have an oxalyplatin holiday, they can always start it up again if, or when, the tumors resume growing. I'll have a CT scan sometime in June, before I start the promised two-month vacation from all chemo.
Meanwhile, without the oxalyplatin, I bounced right back from chemo this week--no nausea, not much fatigue. It was a definite, and pleasant, change from the past two or three chemo infusions. So now I just have to have faith that the tumors have been beaten back enough that they'll lie low for a while. Or maybe what I have to do is just ignore, for now, the possibility that without the oxalyplatin, they'll grow back. We call this denial. Which is not to say it's a bad thing to do.
The experience mirrored, in a way, the balancing act involved in organizing Sunday's trip to Trinity UCC. People who had expressed interest in the trip started questioning the decision to go as soon as Rev. Wright's media exposure began. But the responses ranged from "don't go"--expressed quite well by Fred B in his comment on last week's blog post--to "I would be even more interested in the trip if Rev. Wright were going to be preaching." And I had already chartered the bus. So what to do? How to balance the "go" and "don't go" arguments?
Since I never intended the trip to be an endorsement of Rev. Wright or Barack Obama, much less Louis Farrakhan, but had been clear from the beginning that I wanted to bring people to Trinity to express support for the congregation itself, I decided to go ahead with the trip. I had to have faith that people would understand the rationale for the visit, whether or not they agreed with it--and to practice a little denial, too, about the likelihood that people wouldn't understand. I explained my motivation aned intent to everyone who asked--including a reporter who's doing a story about the trip in this week's Capital Times (now, sadly, a weekly rather than daily paper). No one canceled his or her reservation, and at the moment, it looks like at least 16 of the 29 seats on the bus will be full. Maybe more. I'll report on the experience next Monday.
Meanwhile, I came across a quotation in an article about the psychological challenges of living with chronic cancer that gives another perspective on balancing acts. The article (which was in an online journal called cureextra) quotes Steven Passik, a psychologist at Memorial Sloan-Kettering Cancer Center in New York. Passik points out that living with chronic cancer requires perspective-taking.and compartmentalizing. "Suddenly, you want to live every moment of every day. But this is just not possible. You can't live in the moment all of the time. You need to cultivate being involved in life with enough denial to put the cancer at arm's length."
Precisely. And it's good practice for all the balancing acts of life.
Showing posts with label oxalyplatin. Show all posts
Showing posts with label oxalyplatin. Show all posts
Monday, May 5, 2008
Monday, February 18, 2008
Some Bits of Miscellany
No profound thoughts today; just a little follow-up to my last blog, and a health update, for those of you who are curious. (Preview: things are fine.)
Politics: Just after I "published" my last post, I realized that my concept of a President's job has changed, and my current idea--that a President is, perforce, a leader rather than a policy-maker--is one of the reasons I support Barack Obama. Certainly, policy issues are important, and important to me. But no next President--not an Obama, nor a Clinton, nor a McCain--will be able to implement his or her policies without the support of Congress. Not even the most "experienced" President can enact a law. Those of us who want to see progressive policies implemented must work to ensure that we elect progressive legislators, and then be sure they know that we're expecting them to work on our behalf!
I was at the Obama rally in Madison last Tuesday. What most impressed me (other than the enthusiasm of the crowd) was his clear statement that we will change the political system only if we all work for change. I think he understands that he can propose policies, but he can't implement them without our help. But an engaged, active, electorate--energized and inspired by a true leader--can do almost anything. It's not at all clear to me that Hillary Clinton, for all her experience, has that kind of understanding of the political process. During her foray into the health care morass as First Lady, for example, she did (as I recall) very little to rally public support. And as a result, the well-financed (and apparently corrupt--check out what's happening in New York--see editorial in today's Times) insurance industry had its way.
Blog Sharing: Shortly after I wrote last week, a friend of a friend discovered my blog. She lives in Virginia and had just spent four hours helping to get out the vote for Obama. She asked if she could re-post my blog on other blogs. Of course, her email made my day! And she posted the blog entry on the Daily Kos and Obama's website, and sent copies (or maybe a link, I'm not sure) to about 25 friends. A big thank you to her, and to any of you who have shared any part of what I've written with other people.
Now, it's clear to me that politics is much more interesting to most people than death and cancer. But for those of you who are curious:
Health Update: I'm doing very well. The current chemo regime (oxalyplatin every other Thursday) seems to be working; I've outlived my prognosis and am growing stronger every day, thanks to a combination of whey protein and strength training at the gym. (Those body- builders apparently know what they're doing! But no, no anabolic steroids for me.) My breathing is much improved since the fall, though I'm not up to skiing or, as I noted a couple of weeks ago, swimming. If the snow would ever stop falling, and what's on the ground would melt, I'd try biking on the bike path, though!
The next CT scan won't be for a month or two. Dr. Holen, my oncologist, explained that patients sometimes develop an allergy to the contrast they infuse during the procedure, and the more times you're exposed to the contrast, the greater the probability of an allergic reaction. Besides, what matters, really, is the clinical evidence--that my breathing is better, my voice is no worse (and possibly better), and so forth. After all, the last CT scan I had, in September, looked pretty good. And less than a week later I woke in the middle of the night, unable to breathe, and it soon became clear that however small the tumors were, one or two of them were affecting crucial nerves. I think if (or when) the chemo stops working, it'll be clear to me and everyone else!
But I'm hoping that won't happen at least until I've had a chance to vote in November!
Politics: Just after I "published" my last post, I realized that my concept of a President's job has changed, and my current idea--that a President is, perforce, a leader rather than a policy-maker--is one of the reasons I support Barack Obama. Certainly, policy issues are important, and important to me. But no next President--not an Obama, nor a Clinton, nor a McCain--will be able to implement his or her policies without the support of Congress. Not even the most "experienced" President can enact a law. Those of us who want to see progressive policies implemented must work to ensure that we elect progressive legislators, and then be sure they know that we're expecting them to work on our behalf!
I was at the Obama rally in Madison last Tuesday. What most impressed me (other than the enthusiasm of the crowd) was his clear statement that we will change the political system only if we all work for change. I think he understands that he can propose policies, but he can't implement them without our help. But an engaged, active, electorate--energized and inspired by a true leader--can do almost anything. It's not at all clear to me that Hillary Clinton, for all her experience, has that kind of understanding of the political process. During her foray into the health care morass as First Lady, for example, she did (as I recall) very little to rally public support. And as a result, the well-financed (and apparently corrupt--check out what's happening in New York--see editorial in today's Times) insurance industry had its way.
Blog Sharing: Shortly after I wrote last week, a friend of a friend discovered my blog. She lives in Virginia and had just spent four hours helping to get out the vote for Obama. She asked if she could re-post my blog on other blogs. Of course, her email made my day! And she posted the blog entry on the Daily Kos and Obama's website, and sent copies (or maybe a link, I'm not sure) to about 25 friends. A big thank you to her, and to any of you who have shared any part of what I've written with other people.
Now, it's clear to me that politics is much more interesting to most people than death and cancer. But for those of you who are curious:
Health Update: I'm doing very well. The current chemo regime (oxalyplatin every other Thursday) seems to be working; I've outlived my prognosis and am growing stronger every day, thanks to a combination of whey protein and strength training at the gym. (Those body- builders apparently know what they're doing! But no, no anabolic steroids for me.) My breathing is much improved since the fall, though I'm not up to skiing or, as I noted a couple of weeks ago, swimming. If the snow would ever stop falling, and what's on the ground would melt, I'd try biking on the bike path, though!
The next CT scan won't be for a month or two. Dr. Holen, my oncologist, explained that patients sometimes develop an allergy to the contrast they infuse during the procedure, and the more times you're exposed to the contrast, the greater the probability of an allergic reaction. Besides, what matters, really, is the clinical evidence--that my breathing is better, my voice is no worse (and possibly better), and so forth. After all, the last CT scan I had, in September, looked pretty good. And less than a week later I woke in the middle of the night, unable to breathe, and it soon became clear that however small the tumors were, one or two of them were affecting crucial nerves. I think if (or when) the chemo stops working, it'll be clear to me and everyone else!
But I'm hoping that won't happen at least until I've had a chance to vote in November!
Thursday, January 17, 2008
Snorkeling and Chemotherapy
First, a reminder: If you want to be notified whenever I've added a post to this blog, scroll all the way down to the bottom of this page and click on "subscribe." Don't worry--you won't fry your computer, whatever you click on! Experiment a little, if you're confused by the lingo.
Snorkeling: I was thrilled, this week, to discover that I have enough breath to snorkel! At the end of this month, I'm going to visit my friend Jackie, a speech therapist who's working on St. Thomas and St. John in the Virgin Islands this semester. I really wanted to be able to snorkel, but last fall when I tried to swim (at the gym), it was a near-disaster. I slid into the lap pool and the cold water knocked out what little breath I had left (this was before, or maybe just after I started chemo again in October). I managed to swim about a half a length, gasping, very close to the wall of the pool, before I realized that there was no one at all, except me, in the pool room, and this could be the stupidest thing I'd ever done in my life. So I got out of the lap pool, and tried swimming in the warm water pool. That was better, but not great. And although I didn't try snorkeling then, I'm sure it would have been extremely difficult, if not impossible.
So it was with some trepidation that I took my snorkel and mask to the warm water pool on Tuesday. But it was no problem! So I am off to see the pretty fish on Jan 27.
Chemotherapy: Last Thursday, when I was sitting in the oncology clinic getting my chemo infusion, it occurred to me that people (at least some people) might be interested in knowing what this is really like. (If you're not one of those people, you can stop reading now.) In my experience, chemo has changed enormously in the past 25 years; all I can remember from my Hodgkin's chemo is spending two days after each treatment on my knees in front of the toilet. But that was before anti-nausea drugs were available. I recently mentioned to a long-time chemo nurse that I thought it was odd that I had no memory of actually receiving the Hodgkin's chemo. "Oh," she said. "That's because we used to knock you people out so you wouldn't get sick before y9u left the clinic." Oh.
Of course there are many different types of chemo, and different people have different reactions to each of them. But here's what happens to me, on my current regimen. I'm now getting oxalyplatin and 5FU; this is the third kind of chemo I've had for stomach cancer. (The other two regimens stopped working, which is common. The tumor cells eventually evolve to get around
whatever was stopping them from growing.)
I get an infusion of oxalyplatin every two weeks, on Thursdays. This involves sitting in a chair in the clinic for at least 2 1/2 hours--a half hour while the pre-med pills (a steroid, dexamethasone, and an anti-nausea drug) take efect, and then two hours while the oxalyplatin runs through my veins. I have a port--a direct line from my chest into a vein--installed because I long ago ran out of really good veins to access for an IV line. The Hodgkin's chemo effectively destroyed the veins in my right arm, and after a couple of rounds of chemo for stomach cancer, it was just taking too much time for the lab techs to find decent veins in my left arm.
The infusion, including accessing the port with a small, fine needle, is painless. I sit there and do the Times crossword puzzle, read the New Yorker, and watch DVDs. A year ago, for my birthday, my sons and sister Susie gave me a really terrific present: a portable DVD player and a Netflix subscription. I would never have imagined I could enjoy a present so much. I've been working my way through "Six Feet Under," one episode per infusion--I'm at the end of the fifth season now, and because my sense of irony may be fading, I'm thinking of getting "The Wire" next.
As soon as the oxalyplatin infusion is done, I get hooked up to a portable pump, which I wear for 46 hours while it infuses 5FU into my veins. (Another reason for having a port; I couldn't very well walk around Madison for two days with an IV pole.) Again, this is totally painless. I disconnect myself from the pump on Saturday morning, and go on my way.
Of course, there are side effects, but really, they're not too bad. And I'm amazed by how predictable they are. After the Thursday treatment, I'm pretty wiped out, and often just go home and sleep. Until this last treatment (last Thursday), the steroid perked me up by Friday morning and carried me through the weekend. For some reason, last week that didn't work. Maybe I was fighting some other bug, or maybe I was still recovering from my New Year's trip to Zion and LA, but I slept pretty much all of Friday. I'd get out of bed, do something strenuous like reading the newspaper, and then decide I had to crawl back into bed. By the time I disconnected from the pump on Saturday morning, though, I was pretty much back to what passes for normal energy for me these days.
The most stunning side effect of oxalyplatin, which apparently happens to virtually everyone, is extreme cold sensitivity. I have to wear gloves to take things out of the refrigerator! If I eat or drink something cold, the inside of my mouth tingles. When I go out in the Wisconsin winter, the insides of my thighs tingle, my hands tingle and even sometimes get kind of rigid, my face tingles and my jaw freezes. This effect starts pretty much right away, and lasts about four days. It's worst on Friday and Saturday, I think; by Monday, it's pretty much gone, or at least so tolerable I don't notice it very much. It's not a painful sensation, but it's not exactly pleasant. Sort of like the prickles you get when an arm or leg has gone to sleep and is waking up.
On Sunday, I often get another side effect: stiff calf muscles. But stretching takes care of that.
By Monday, I'm really beginning to feel good, and this feeling only improves for the next ten days or so, until the next chemo treatment. But a week after the treatment, again pretty much like clockwork, I notice that the insides of my mouth and nostrils--places where cells are turning over pretty fast--have become sensitive. The sores (if you can even call them that) last only two or three days, but I can't eat spicy food because it burns my mouth. Not really a big deal, except when (like last night) I forget to tell the waiter to ask the chef to leave out the red peppers in the sauce for the mussels and clams!
The long-term side effects of chemotherapy include destroying the villi that line the intestine and are instrumental in absorbing nutrients, and destroying red and white blood cells, or the ability of the bone marrow to replace them. I've had a lot of gut problems and consequent weight loss, though I think I'm finally getting that under control. I haven't had any problem with my white blood cells; I did have some anemia, but twice I got Epo shots (Epogen--the same thing some nefarious athletes use in blood doping), and I guess that worked, because last week, my red count was good enough that they didn't give me a shot.
So there you have it. I wouldn't say chemotherapy is unmitigated joy, but it isn't the horror that many people assume. And I do think that the assumption that it will be a horror feeds a fear that only makes the experience worse.
If you have questions about all this, post a comment, and I'll be happy to answer, if I can.
Snorkeling: I was thrilled, this week, to discover that I have enough breath to snorkel! At the end of this month, I'm going to visit my friend Jackie, a speech therapist who's working on St. Thomas and St. John in the Virgin Islands this semester. I really wanted to be able to snorkel, but last fall when I tried to swim (at the gym), it was a near-disaster. I slid into the lap pool and the cold water knocked out what little breath I had left (this was before, or maybe just after I started chemo again in October). I managed to swim about a half a length, gasping, very close to the wall of the pool, before I realized that there was no one at all, except me, in the pool room, and this could be the stupidest thing I'd ever done in my life. So I got out of the lap pool, and tried swimming in the warm water pool. That was better, but not great. And although I didn't try snorkeling then, I'm sure it would have been extremely difficult, if not impossible.
So it was with some trepidation that I took my snorkel and mask to the warm water pool on Tuesday. But it was no problem! So I am off to see the pretty fish on Jan 27.
Chemotherapy: Last Thursday, when I was sitting in the oncology clinic getting my chemo infusion, it occurred to me that people (at least some people) might be interested in knowing what this is really like. (If you're not one of those people, you can stop reading now.) In my experience, chemo has changed enormously in the past 25 years; all I can remember from my Hodgkin's chemo is spending two days after each treatment on my knees in front of the toilet. But that was before anti-nausea drugs were available. I recently mentioned to a long-time chemo nurse that I thought it was odd that I had no memory of actually receiving the Hodgkin's chemo. "Oh," she said. "That's because we used to knock you people out so you wouldn't get sick before y9u left the clinic." Oh.
Of course there are many different types of chemo, and different people have different reactions to each of them. But here's what happens to me, on my current regimen. I'm now getting oxalyplatin and 5FU; this is the third kind of chemo I've had for stomach cancer. (The other two regimens stopped working, which is common. The tumor cells eventually evolve to get around
whatever was stopping them from growing.)
I get an infusion of oxalyplatin every two weeks, on Thursdays. This involves sitting in a chair in the clinic for at least 2 1/2 hours--a half hour while the pre-med pills (a steroid, dexamethasone, and an anti-nausea drug) take efect, and then two hours while the oxalyplatin runs through my veins. I have a port--a direct line from my chest into a vein--installed because I long ago ran out of really good veins to access for an IV line. The Hodgkin's chemo effectively destroyed the veins in my right arm, and after a couple of rounds of chemo for stomach cancer, it was just taking too much time for the lab techs to find decent veins in my left arm.
The infusion, including accessing the port with a small, fine needle, is painless. I sit there and do the Times crossword puzzle, read the New Yorker, and watch DVDs. A year ago, for my birthday, my sons and sister Susie gave me a really terrific present: a portable DVD player and a Netflix subscription. I would never have imagined I could enjoy a present so much. I've been working my way through "Six Feet Under," one episode per infusion--I'm at the end of the fifth season now, and because my sense of irony may be fading, I'm thinking of getting "The Wire" next.
As soon as the oxalyplatin infusion is done, I get hooked up to a portable pump, which I wear for 46 hours while it infuses 5FU into my veins. (Another reason for having a port; I couldn't very well walk around Madison for two days with an IV pole.) Again, this is totally painless. I disconnect myself from the pump on Saturday morning, and go on my way.
Of course, there are side effects, but really, they're not too bad. And I'm amazed by how predictable they are. After the Thursday treatment, I'm pretty wiped out, and often just go home and sleep. Until this last treatment (last Thursday), the steroid perked me up by Friday morning and carried me through the weekend. For some reason, last week that didn't work. Maybe I was fighting some other bug, or maybe I was still recovering from my New Year's trip to Zion and LA, but I slept pretty much all of Friday. I'd get out of bed, do something strenuous like reading the newspaper, and then decide I had to crawl back into bed. By the time I disconnected from the pump on Saturday morning, though, I was pretty much back to what passes for normal energy for me these days.
The most stunning side effect of oxalyplatin, which apparently happens to virtually everyone, is extreme cold sensitivity. I have to wear gloves to take things out of the refrigerator! If I eat or drink something cold, the inside of my mouth tingles. When I go out in the Wisconsin winter, the insides of my thighs tingle, my hands tingle and even sometimes get kind of rigid, my face tingles and my jaw freezes. This effect starts pretty much right away, and lasts about four days. It's worst on Friday and Saturday, I think; by Monday, it's pretty much gone, or at least so tolerable I don't notice it very much. It's not a painful sensation, but it's not exactly pleasant. Sort of like the prickles you get when an arm or leg has gone to sleep and is waking up.
On Sunday, I often get another side effect: stiff calf muscles. But stretching takes care of that.
By Monday, I'm really beginning to feel good, and this feeling only improves for the next ten days or so, until the next chemo treatment. But a week after the treatment, again pretty much like clockwork, I notice that the insides of my mouth and nostrils--places where cells are turning over pretty fast--have become sensitive. The sores (if you can even call them that) last only two or three days, but I can't eat spicy food because it burns my mouth. Not really a big deal, except when (like last night) I forget to tell the waiter to ask the chef to leave out the red peppers in the sauce for the mussels and clams!
The long-term side effects of chemotherapy include destroying the villi that line the intestine and are instrumental in absorbing nutrients, and destroying red and white blood cells, or the ability of the bone marrow to replace them. I've had a lot of gut problems and consequent weight loss, though I think I'm finally getting that under control. I haven't had any problem with my white blood cells; I did have some anemia, but twice I got Epo shots (Epogen--the same thing some nefarious athletes use in blood doping), and I guess that worked, because last week, my red count was good enough that they didn't give me a shot.
So there you have it. I wouldn't say chemotherapy is unmitigated joy, but it isn't the horror that many people assume. And I do think that the assumption that it will be a horror feeds a fear that only makes the experience worse.
If you have questions about all this, post a comment, and I'll be happy to answer, if I can.
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