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.
Showing posts with label chemotherapy. Show all posts
Showing posts with label chemotherapy. Show all posts
Tuesday, April 17, 2007
Wednesday, April 04, 2007
"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.
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.
Wednesday, March 07, 2007
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!
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!
Tuesday, February 20, 2007
Today, I Haven't Felt Healthy
This is about chemo side effects. I don't think my essential health has changed (although I'm hoping that the tumors are being eaten up by the chemo), but I had a rough day today. As I start to write this, I worry about whining, but I also want to share some of this, because I know I'm not alone in experiencing side effects from the chemo.
The oxaliplatin makes me sensitive to the cold. Today was warmer than it's been, reaching almost 50 degrees F in Boston, so my long johns (under my pants), and long coat and hat and scarf and gloves made me feel and look overdressed for the weather. And, I confess, I was hot underneath all of those layers this afternoon. But, I had to keep the scarf over my mouth and nose because the chemo is making them super sensitive to the cold. My nose feels like it's 10 degrees out, with a biting wind, and every nose hair is freezing. But it was 49 degrees F when I walked to the train this afternoon!
In the elevator as I was leaving my office building, a secretary from our floor (but not my office, where everyone knows I'm on chemo) looked at me bundled up and said, puzzled, "It's warm outside." "I know," I responded, "but I'm on chemotherapy, and a side effect is extreme sensitivity to cold. That's why I'm bundled up." I felt that her comment had just confirmed for me how bizarre I looked.
The cold sensitivity makes me unable to drink even "room temperature" water. Do you know how uninteresting warmed, unflavored water tastes? I know I'm not drinking enough, as a result. My tea doesn't taste that great in the morning, and coffee is tasting too strong. What to drink so that I don't get dehydrated?
(A next day note on the beverage point: After I wrote that, I started to wonder what would make my tea taste better, and decided to add a little sugar and some milk, making the tea taste like what Mom would fix for me when I was sick as a child. It seems to be doing the trick, and I've had more liquids in the last 12 hours. Still, if anyone has great tips on what to drink to stay hydrated when only tepid or warm liquids can be consumed, and everything tastes yucky, I'm open to suggestion!)
The Xeloda can give me "hand-foot syndrome." I'm noticing already that my hands and feet have "hot spots," like I've been hiking and I'm developing blisters. Makes me feel like I should spend tomorrow sitting and grading those papers that are still waiting from the weekend. And I have decided that I'll work from home and not go to the city - I don't teach Wednesdays - and not have to deal with whatever weather tomorrow brings.
[A brief interlude for another voice within me: "These side effects aren't that bad. Lots of people have it a lot, lot worse." My inner response: "Yes, but they are my side effects. And besides, I don't want to compare my experience to other people. It's my experience."]
All right, there's more, but enough already. I still have my hair, I'm not vomiting, I can eat and keep food down, I can function well enough to work. I know lots of people have worse side effects than I'm having. But, with treatment that's essentially experimental with gallbladder cancer, and which may or may not be having an impact on my tumors, I have to keep asking myself if the benefit outweighs the problems. It's about quality of life as well as quantity. I'm not having a CT scan until March 5, and that's when we'll learn what's happening inside. And as each day passes since the oxaliplatin infusion, the side effects should lessen, and I should be able to drink milk shakes at night, and eat ice cream, and drink cold beverages. And I should be able to breathe the air outside, whether it's 10 degrees or 55, or even 80 (in St. John, in a little more than two weeks!) On this hard day, I just felt like I was fighting a losing battle, walking uphill into a storm, or some such metaphor for things being tough. So, I share this even though I know it's just a snapshot of one day in my journey through cancer world.
The oxaliplatin makes me sensitive to the cold. Today was warmer than it's been, reaching almost 50 degrees F in Boston, so my long johns (under my pants), and long coat and hat and scarf and gloves made me feel and look overdressed for the weather. And, I confess, I was hot underneath all of those layers this afternoon. But, I had to keep the scarf over my mouth and nose because the chemo is making them super sensitive to the cold. My nose feels like it's 10 degrees out, with a biting wind, and every nose hair is freezing. But it was 49 degrees F when I walked to the train this afternoon!
In the elevator as I was leaving my office building, a secretary from our floor (but not my office, where everyone knows I'm on chemo) looked at me bundled up and said, puzzled, "It's warm outside." "I know," I responded, "but I'm on chemotherapy, and a side effect is extreme sensitivity to cold. That's why I'm bundled up." I felt that her comment had just confirmed for me how bizarre I looked.
The cold sensitivity makes me unable to drink even "room temperature" water. Do you know how uninteresting warmed, unflavored water tastes? I know I'm not drinking enough, as a result. My tea doesn't taste that great in the morning, and coffee is tasting too strong. What to drink so that I don't get dehydrated?
(A next day note on the beverage point: After I wrote that, I started to wonder what would make my tea taste better, and decided to add a little sugar and some milk, making the tea taste like what Mom would fix for me when I was sick as a child. It seems to be doing the trick, and I've had more liquids in the last 12 hours. Still, if anyone has great tips on what to drink to stay hydrated when only tepid or warm liquids can be consumed, and everything tastes yucky, I'm open to suggestion!)
The Xeloda can give me "hand-foot syndrome." I'm noticing already that my hands and feet have "hot spots," like I've been hiking and I'm developing blisters. Makes me feel like I should spend tomorrow sitting and grading those papers that are still waiting from the weekend. And I have decided that I'll work from home and not go to the city - I don't teach Wednesdays - and not have to deal with whatever weather tomorrow brings.
[A brief interlude for another voice within me: "These side effects aren't that bad. Lots of people have it a lot, lot worse." My inner response: "Yes, but they are my side effects. And besides, I don't want to compare my experience to other people. It's my experience."]
All right, there's more, but enough already. I still have my hair, I'm not vomiting, I can eat and keep food down, I can function well enough to work. I know lots of people have worse side effects than I'm having. But, with treatment that's essentially experimental with gallbladder cancer, and which may or may not be having an impact on my tumors, I have to keep asking myself if the benefit outweighs the problems. It's about quality of life as well as quantity. I'm not having a CT scan until March 5, and that's when we'll learn what's happening inside. And as each day passes since the oxaliplatin infusion, the side effects should lessen, and I should be able to drink milk shakes at night, and eat ice cream, and drink cold beverages. And I should be able to breathe the air outside, whether it's 10 degrees or 55, or even 80 (in St. John, in a little more than two weeks!) On this hard day, I just felt like I was fighting a losing battle, walking uphill into a storm, or some such metaphor for things being tough. So, I share this even though I know it's just a snapshot of one day in my journey through cancer world.
Saturday, February 17, 2007
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.
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.
Sunday, February 04, 2007
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 . . .
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 . . .
Sunday, January 28, 2007
Chemo, Day 3
This is just a quick post to let all of you know that I'm doing fine, just tired. I'm still having some cold sensitivity, but the house is warmer, and so is the outside world. I haven't been nauseous, but I've been consistent in taking the anti-nausea medicine, and eating regular meals. I felt in a bit of chemo fog this morning, but that passed.
My most unexpected side effect is that when I begin to eat, my salivary glands shoot out saliva with such force that they ache momentarily. And when I began to cry during a tender moment during our church service this morning, I had a similar sense of pressure being released. Really weird!
Since this morning's tiredness and a good afternoon nap, I've been feeling better, more energetic. We had a wonderful church choir party this evening - potluck supper and lots of laughter, and that raised my spirits and helped me get out of myself.
Thanks to all of you for words of support and encouragement and prayer. It means more to me than I can say. I really, really appreciate the sense of being held by so many friends as I travel this road. And tomorrow is another day!
My most unexpected side effect is that when I begin to eat, my salivary glands shoot out saliva with such force that they ache momentarily. And when I began to cry during a tender moment during our church service this morning, I had a similar sense of pressure being released. Really weird!
Since this morning's tiredness and a good afternoon nap, I've been feeling better, more energetic. We had a wonderful church choir party this evening - potluck supper and lots of laughter, and that raised my spirits and helped me get out of myself.
Thanks to all of you for words of support and encouragement and prayer. It means more to me than I can say. I really, really appreciate the sense of being held by so many friends as I travel this road. And tomorrow is another day!
Saturday, January 27, 2007
Beginning Chemo
I have begun receiving the chemo treatments. Despite Thursday's confusion, Patty and I both awoke Friday with a conviction that we were going to make things happen, and that we would move forward on both the chemo and the stent for my kidney. And so we did. My internet friend, Jeanne, the assertive cancer patient, is so right about being assertive, and not passive!
Before I describe yesterday's adventure, I want to say that I feel good this morning, I slept well, and with the anti-nausea meds they gave me, I've only had a little queasiness, and that passed. And for those of you who said don't wait to take the medicine before chemo, know that I didn't! In fact, the chemo nurse, Linda, said that she always recommends that people take it, and I was given a pill and then some medicine IV before the infusion.
The details of how we maneuvered all of this aren't as important as the fact that we did. Suffice it say that we were just really clear with everyone (yes, we, as Patty was double teaming with me) that we wanted to proceed, and make things happen. Once we told the oncology nurse, Sue, that we did want to proceed with chemo, she got us back on the schedule. And the oncologist, Dr. J, finally found a urologist in the hospital who would see me, after the two of them talked about my scans. The urologist, Dr. D, didn't think my situation was an emergency, talked about the options for a stent, and said he would have needed an initial appointment/interview anyway, before performing the procedure. Later in the day, we were given an appointment next Friday, Feb. 2, for the procedure, which he wants to do under general anesthesia. I am trusting that in one week, even with the chemo doing its job on the tumor, my blood counts will be high enough for the procedure to happen.
So, what's it like to get chemo? Everyone in the chemo room was really friendly, really nice, and astonishingly relaxed. I liked all of my care providers. I had an infusion of Oxaliplatin, a drug that has been successfully used for colon cancer. The weird thing about this drug is that it gives the patient - that's me! - an exquisitely high sensitivity to cold. This begins with the treatment, and lasts for a few days afterward. No iced drinks, cover my mouth when going out in the cold air - and cover all exposed skin possible, try not to handle cold bottles from the refrigerator with bare hands . . . a strange and surprising list. Linda described the effect on skin as feeling like pins and needles (and I was to discover that she was right, as you will read). I had this infusion on the coldest day of this year, with the temperature never rising above 11 F during the day! The infusion is pretty straightforward, except that the drug can make your arm ache, and the nurses did slow down the infusion when I had one hive, and some soreness.
Two funny stories about the aftermath of the drug.
As we were driving home, I picked up a bottle of water that had spent the day in our car, in the garage four levels below the surface of the clinic building. There was no ice in it and it didn't feel cold, so I thought it was safe to drink. But no! When I swallowed the water, it felt as if there was slush on the top, as the roof of my mouth burst into millions of "pins and needles!" I was so surprised! The feeling continued down into my throat, where it feels more numb and freaky, but that passed also.
We live in an old house, and our furnace had been a little temperamental this week. It was fixed while we were gone, but when we returned home, where our good friend Sandy had brought the kids home from school, the house was still cool - 58 F. When I sat down to go to the bathroom, the toilet seat was so chilled that I had pins and needles on my butt where it had felt the cold seat! It passed in about five minutes, but was wierd! Even this morning, with the heat up to 65 F, when I walk around, the backs of my legs tingle occasionally, telling me that they aren't exactly toasty! Personally, I feel plenty warm enough!
The other drug I am taking is Xeloda, in pill form, each morning and evening after my meal. I started it last night, and had my second dose this morning after breakfast.
I will have more stories to share, I'm sure, but this is a beginning. I am grateful for all of the support from so many of you during this tumultuous week. Now I feel we have a course, a plan, we've begun to implement it, and this chemo and I are going to send this gallbladder cancer packing!
Before I describe yesterday's adventure, I want to say that I feel good this morning, I slept well, and with the anti-nausea meds they gave me, I've only had a little queasiness, and that passed. And for those of you who said don't wait to take the medicine before chemo, know that I didn't! In fact, the chemo nurse, Linda, said that she always recommends that people take it, and I was given a pill and then some medicine IV before the infusion.
The details of how we maneuvered all of this aren't as important as the fact that we did. Suffice it say that we were just really clear with everyone (yes, we, as Patty was double teaming with me) that we wanted to proceed, and make things happen. Once we told the oncology nurse, Sue, that we did want to proceed with chemo, she got us back on the schedule. And the oncologist, Dr. J, finally found a urologist in the hospital who would see me, after the two of them talked about my scans. The urologist, Dr. D, didn't think my situation was an emergency, talked about the options for a stent, and said he would have needed an initial appointment/interview anyway, before performing the procedure. Later in the day, we were given an appointment next Friday, Feb. 2, for the procedure, which he wants to do under general anesthesia. I am trusting that in one week, even with the chemo doing its job on the tumor, my blood counts will be high enough for the procedure to happen.
So, what's it like to get chemo? Everyone in the chemo room was really friendly, really nice, and astonishingly relaxed. I liked all of my care providers. I had an infusion of Oxaliplatin, a drug that has been successfully used for colon cancer. The weird thing about this drug is that it gives the patient - that's me! - an exquisitely high sensitivity to cold. This begins with the treatment, and lasts for a few days afterward. No iced drinks, cover my mouth when going out in the cold air - and cover all exposed skin possible, try not to handle cold bottles from the refrigerator with bare hands . . . a strange and surprising list. Linda described the effect on skin as feeling like pins and needles (and I was to discover that she was right, as you will read). I had this infusion on the coldest day of this year, with the temperature never rising above 11 F during the day! The infusion is pretty straightforward, except that the drug can make your arm ache, and the nurses did slow down the infusion when I had one hive, and some soreness.
Two funny stories about the aftermath of the drug.
As we were driving home, I picked up a bottle of water that had spent the day in our car, in the garage four levels below the surface of the clinic building. There was no ice in it and it didn't feel cold, so I thought it was safe to drink. But no! When I swallowed the water, it felt as if there was slush on the top, as the roof of my mouth burst into millions of "pins and needles!" I was so surprised! The feeling continued down into my throat, where it feels more numb and freaky, but that passed also.
We live in an old house, and our furnace had been a little temperamental this week. It was fixed while we were gone, but when we returned home, where our good friend Sandy had brought the kids home from school, the house was still cool - 58 F. When I sat down to go to the bathroom, the toilet seat was so chilled that I had pins and needles on my butt where it had felt the cold seat! It passed in about five minutes, but was wierd! Even this morning, with the heat up to 65 F, when I walk around, the backs of my legs tingle occasionally, telling me that they aren't exactly toasty! Personally, I feel plenty warm enough!
The other drug I am taking is Xeloda, in pill form, each morning and evening after my meal. I started it last night, and had my second dose this morning after breakfast.
I will have more stories to share, I'm sure, but this is a beginning. I am grateful for all of the support from so many of you during this tumultuous week. Now I feel we have a course, a plan, we've begun to implement it, and this chemo and I are going to send this gallbladder cancer packing!
Thursday, January 25, 2007
Emotionally Wrung Out
Okay, I created this title and had something to say even before I read the amazing and supportive comments in response to yesterday's blog. I wept my way through all of your wonderful comments. I am so, so tired. It's been such a long week of doctor appointments and very disappointing news, and aches in my belly, and confusion.
Even tomorrow's chemo is confused because the oncologist wants me to see a urologist to get a stent before I start chemo, and no urologist is available until Feb. 5. Can't wait that long to start chemo. So I don't know what will happen tomorrow, but I trust that something will. I am worried about the tumor, and feel that we need to tell it to stop growing NOW, and to shrink.
I told the students in two of my classes today about my cancer and impending chemo, and that was exhausting, too. I didn't want it to be a secret, something some of them knew or heard through the grapevine, and I also didn't want to give them more info than they could possibly want. I told them my chemo would make me sensitive to the cold weather, and that I could show up in class looking like the Abominable Snow-woman . . . or Nanook of the North . . . or something similar.
So I am exhausted from the emotional ups and downs of this week, yesterday feeling things were settled, and having the rug pulled out mid-day about this urologist appointment. And I am so, so grateful for all of your posts, all of your support, suggestions for staying calm and centered, and your words of wisdom. Do trust that I will not delay taking the anti-nausea medicine, and I appreciate all of the first-hand testimony about that! Thank you, thank you, dear friends, friends from church, from long ago and faraway, and now also, from summer camp, from so many parts of my life. I so appreciate your support.
Even tomorrow's chemo is confused because the oncologist wants me to see a urologist to get a stent before I start chemo, and no urologist is available until Feb. 5. Can't wait that long to start chemo. So I don't know what will happen tomorrow, but I trust that something will. I am worried about the tumor, and feel that we need to tell it to stop growing NOW, and to shrink.
I told the students in two of my classes today about my cancer and impending chemo, and that was exhausting, too. I didn't want it to be a secret, something some of them knew or heard through the grapevine, and I also didn't want to give them more info than they could possibly want. I told them my chemo would make me sensitive to the cold weather, and that I could show up in class looking like the Abominable Snow-woman . . . or Nanook of the North . . . or something similar.
So I am exhausted from the emotional ups and downs of this week, yesterday feeling things were settled, and having the rug pulled out mid-day about this urologist appointment. And I am so, so grateful for all of your posts, all of your support, suggestions for staying calm and centered, and your words of wisdom. Do trust that I will not delay taking the anti-nausea medicine, and I appreciate all of the first-hand testimony about that! Thank you, thank you, dear friends, friends from church, from long ago and faraway, and now also, from summer camp, from so many parts of my life. I so appreciate your support.
Thursday, October 05, 2006
What, Me Worry?
What does a person with cancer worry about? Everything! Or, at least it seems that way. I started to call this entry "What do people with cancer worry about?" but I realized I can't speak for everyone. Well, I do know some of the things others with cancer worry about, because I read them online. Reading Leroy's blog, and comments there, reading the discussion boards of others with gallbladder or bile duct cancer (cholangiocarcinoma), I see that lots of folks are worried about their treatment not being effective, or, if in remission, that their cancer will come back. Many of us with cancer, and our friends and family members, are worrying about suffering, and about dying before our time. Those of us not currently having symptoms of our cancer worry about the symptoms returning. We worry about needing treatment.
I am definitely in that group, worrying and then trying not to worry about twinges in my abdomen, a small ache here, soreness there. Last week, I had indigestion for a few days, and it brought me back to the week before I was hospitalized last May. (I want to say now that I think, logically, that my indigestion was caused because I kept forgetting to take the Protonix prescribed by my doctors, the only drug I'm still on post surgery. Protonix is a "proton pump inhibitor" drug that inhibits the production of stomach acid, and keeps indigestion down.)
So, my indigestion story: Last May I was called to jury duty, and finally sat on a jury. At lunch on Monday, they set us loose, and I went down the street and, for lunch, bought a turkey sub which happened to come with tasty raw onions. Later, I had indigestion. Foolishly, on Tuesday I bought the same lunch, forgetting about the indigestion. Two days later, my urine changed color, and three days after that, my skin began to itch. So, my "story" about my blocked bile duct is that the final straw was caused by those raw onions! Obviously, the cancer had been growing for a while, and I don't "blame" those onions for my blocked bile duct, but the association is there for me. Once my bile duct was blocked, nothing tasted or sat quite right, and I had a rough week before going to the doctor's office. Having indigestion for two days last week reminded me of those days and brought up my fear about a repeat of the days before my hospitalization and then my surgery.
I worry about the future. I worry about teaching next fall, about staying well long enough to continue with my life, to see Lucy move into junior high school, and then high school, to see Nathaniel compete in gymnastics for many more years, to grow out the two front teeth he's lost, and develop into a young man.
I worry about getting a bad CT scan and then needing chemo. Then, I worry about the effects of the chemo, and I try not to worry, because I don't want to anticipate how my body will react. I worry about worrying, and then I try not to worry. Some days since my last clean scan, I have thought only occasionally about cancer, about having cancer, and some days I can't seem to think about anything else.
After I wrote the first part of this, I had a conversation with Patty about this Sunday's sermon. (Patty is a minister, so most weeks, she has a sermon to write for Sunday service.) Our conversation reminded me of the Serenity Prayer, one so central to Alcoholics Anonymous, and one which speaks to so many of us. I think it's what I need to remember when I worry.
God,
Grant me the Serenity to accept the things I cannot change;
The Courage to change the things I can; and
The Wisdom to know the difference.
I can't change what's happened in my body, but I can change how I feel about it. And when I worry, I can recognize that what I worry about is out of my control, and release it. I also want to remind myself that my goal since my diagnosis has been to live in the moment. When I worry, I project into the future and let go of the present moment. Serenity. Leting go of worry about the future. Being in the moment.
I am definitely in that group, worrying and then trying not to worry about twinges in my abdomen, a small ache here, soreness there. Last week, I had indigestion for a few days, and it brought me back to the week before I was hospitalized last May. (I want to say now that I think, logically, that my indigestion was caused because I kept forgetting to take the Protonix prescribed by my doctors, the only drug I'm still on post surgery. Protonix is a "proton pump inhibitor" drug that inhibits the production of stomach acid, and keeps indigestion down.)
So, my indigestion story: Last May I was called to jury duty, and finally sat on a jury. At lunch on Monday, they set us loose, and I went down the street and, for lunch, bought a turkey sub which happened to come with tasty raw onions. Later, I had indigestion. Foolishly, on Tuesday I bought the same lunch, forgetting about the indigestion. Two days later, my urine changed color, and three days after that, my skin began to itch. So, my "story" about my blocked bile duct is that the final straw was caused by those raw onions! Obviously, the cancer had been growing for a while, and I don't "blame" those onions for my blocked bile duct, but the association is there for me. Once my bile duct was blocked, nothing tasted or sat quite right, and I had a rough week before going to the doctor's office. Having indigestion for two days last week reminded me of those days and brought up my fear about a repeat of the days before my hospitalization and then my surgery.
I worry about the future. I worry about teaching next fall, about staying well long enough to continue with my life, to see Lucy move into junior high school, and then high school, to see Nathaniel compete in gymnastics for many more years, to grow out the two front teeth he's lost, and develop into a young man.
I worry about getting a bad CT scan and then needing chemo. Then, I worry about the effects of the chemo, and I try not to worry, because I don't want to anticipate how my body will react. I worry about worrying, and then I try not to worry. Some days since my last clean scan, I have thought only occasionally about cancer, about having cancer, and some days I can't seem to think about anything else.
After I wrote the first part of this, I had a conversation with Patty about this Sunday's sermon. (Patty is a minister, so most weeks, she has a sermon to write for Sunday service.) Our conversation reminded me of the Serenity Prayer, one so central to Alcoholics Anonymous, and one which speaks to so many of us. I think it's what I need to remember when I worry.
God,
Grant me the Serenity to accept the things I cannot change;
The Courage to change the things I can; and
The Wisdom to know the difference.
I can't change what's happened in my body, but I can change how I feel about it. And when I worry, I can recognize that what I worry about is out of my control, and release it. I also want to remind myself that my goal since my diagnosis has been to live in the moment. When I worry, I project into the future and let go of the present moment. Serenity. Leting go of worry about the future. Being in the moment.
Thursday, September 07, 2006
Having Cancer: A Full-time Job
Having a cancer diagnosis is a full-time job, I've decided. I shared that observation with a nurse friend a few weeks ago, and she said that she tells her advanced nursing students exactly that about having a chronic illness. And here I thought I'd had a new insight!
Given that I'm not yet having any regular treatment for the gallbladder cancer, you might ask what takes so much time about having cancer. First, it occupies all of those empty spaces in my mind that I would just as soon remain vacant and quiet. Many nights, I try to sleep, and I start thinking about cancer; I wake up during the night, and I think about cancer; walking, sitting, waiting, any time my mind is not actively engaged, it turns to thoughts of cancer. When I have moments or even stretches of time when I forget that I have cancer, I am delighted.
Aside from thinking about it, I gather information everywhere I can. On my side table, I have a pile of books from the library about cancer and healing: Bill Moyers - Healing and the Mind, What to Eat if you have Cancer, Cancer Clinical Trials. and One Renegade Cell. I have only browsed the books, but there they sit, perhaps holding some valuable gem of information. My friend Alice gave me Return to Wholeness by Dr. David Simon, medical director for the Chopra Center for Well Being, using Ayurvedic techniques, diet, nutrition, herbs and perspectives to assist in traditional cancer treatment. He has wonderfully practical suggestions like how to stimulate an appetite depressed by chemotherapy, and how to work cooperatively with medical personnel and the healing potential in our own bodies to maximize healing and success for treatment. While I have learned much from the first half of the book, the most memorable part for me, so far, is his description of a study that was done by Dr. Robert Ader on how our minds can affect our immune system.
In the study, rats were given sweetened water and then injected with a chemical that would induce nausea and vomiting, and temporarily suppress their immune systems. After the rats had recovered, they were again given sweet water and an injection, this time with saline. Because of their conditioning, they were nauseated from the sweet water and saline injection, but they also showed suppression of their immune system even though no drug was given to cause that affect. Simon comments that "Their immune cells had 'learned' that sweetened water caused them to be suppressed." I haven't started chemo, but it seems that there is a powerful cautionary tale here for the future.
In addition to reading books, I check out the discussion boards to see what's up, read about the chemo drugs on the chemocare.com site, check out the latest research in PubMed, and read the 17-page protocol for the clinical trial proposed to me once again. (This link will take you to the National Institutes of Health site for the particular clinical trial I'm considering. The home site of clinicaltrials.gov can introduce you to other clinical trials around the country.) The "PubMed" site is a government website providing abstracts of medical research around the world. I created an "account" at no charge, receive email notices when a new batch of article abstracts on gallbladder cancer is listed, and can see what's being currently published. Knowing very little about medicine, some of the abstracts are full of medical terminology I don't understand, but the more I read, the more the abstracts begin to make some sense. Some of the recent research is quite encouraging, as new drug combinations, or drugs administered differently have a notable impact on survival of patients with gallbladder cancer.
However, a cautionary note for me. I went to the Bloch Cancer website, full of practical and encouraging information, but when I checked the list of patients who were five years or more post diagnosis, and had a rare cancer, there were none listed with gallbladder or even bile duct cancer.
So, lots to read, lots to think about, lots to learn. A full-time job indeed.
Given that I'm not yet having any regular treatment for the gallbladder cancer, you might ask what takes so much time about having cancer. First, it occupies all of those empty spaces in my mind that I would just as soon remain vacant and quiet. Many nights, I try to sleep, and I start thinking about cancer; I wake up during the night, and I think about cancer; walking, sitting, waiting, any time my mind is not actively engaged, it turns to thoughts of cancer. When I have moments or even stretches of time when I forget that I have cancer, I am delighted.
Aside from thinking about it, I gather information everywhere I can. On my side table, I have a pile of books from the library about cancer and healing: Bill Moyers - Healing and the Mind, What to Eat if you have Cancer, Cancer Clinical Trials. and One Renegade Cell. I have only browsed the books, but there they sit, perhaps holding some valuable gem of information. My friend Alice gave me Return to Wholeness by Dr. David Simon, medical director for the Chopra Center for Well Being, using Ayurvedic techniques, diet, nutrition, herbs and perspectives to assist in traditional cancer treatment. He has wonderfully practical suggestions like how to stimulate an appetite depressed by chemotherapy, and how to work cooperatively with medical personnel and the healing potential in our own bodies to maximize healing and success for treatment. While I have learned much from the first half of the book, the most memorable part for me, so far, is his description of a study that was done by Dr. Robert Ader on how our minds can affect our immune system.
In the study, rats were given sweetened water and then injected with a chemical that would induce nausea and vomiting, and temporarily suppress their immune systems. After the rats had recovered, they were again given sweet water and an injection, this time with saline. Because of their conditioning, they were nauseated from the sweet water and saline injection, but they also showed suppression of their immune system even though no drug was given to cause that affect. Simon comments that "Their immune cells had 'learned' that sweetened water caused them to be suppressed." I haven't started chemo, but it seems that there is a powerful cautionary tale here for the future.
In addition to reading books, I check out the discussion boards to see what's up, read about the chemo drugs on the chemocare.com site, check out the latest research in PubMed, and read the 17-page protocol for the clinical trial proposed to me once again. (This link will take you to the National Institutes of Health site for the particular clinical trial I'm considering. The home site of clinicaltrials.gov can introduce you to other clinical trials around the country.) The "PubMed" site is a government website providing abstracts of medical research around the world. I created an "account" at no charge, receive email notices when a new batch of article abstracts on gallbladder cancer is listed, and can see what's being currently published. Knowing very little about medicine, some of the abstracts are full of medical terminology I don't understand, but the more I read, the more the abstracts begin to make some sense. Some of the recent research is quite encouraging, as new drug combinations, or drugs administered differently have a notable impact on survival of patients with gallbladder cancer.
However, a cautionary note for me. I went to the Bloch Cancer website, full of practical and encouraging information, but when I checked the list of patients who were five years or more post diagnosis, and had a rare cancer, there were none listed with gallbladder or even bile duct cancer.
So, lots to read, lots to think about, lots to learn. A full-time job indeed.
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