What a delight your comments have been to my post yesterday about oxalis and oxaliplatin! Mikebel, I don't know you, and don't have any way of contacting you, but I really appreciate the information about oxalic acid, and how oxaliplatin was developed. I didn't know any of that, and I love information! I also love rhubarb, but I'd rather eat it, even without sweetener, than have infusions with oxaliplatin! And I think I'll pass on the spin in the washer with the oxalic acid, Jan, but I get that it's a serious chemical!
So, without wanting to get too excited, I have two reports on the chemo front.
The first is that the "spot" in my abdomen (actually "spot #2" since the first one was removed), is noticeably smaller than it was in January when I had my last scan. It's still there, it's round and hard, but it no longer feels like the tumor that wants to gobble up my insides, or grow to be a grapefruit. Of course, I won't know anything about the more dangerous tumor that's inside my abdomen, out of reach, and endangering some of my internal organs until I have the scan on March 5. Still, it makes sense that if my "spot" is shrinking, so is that nasty tumor inside! So, this gives me optimism that my fight against the tumors is having success! (And after some of the tough days this past week, that's especially good . . . ) Since the surgical oncologist, Dr. M, had mentioned that this might be a reason to keep this "spot," I'm appreciating his suggestion. I can't believe I can actually feel a change in it!
The other report is more anecdotal, me making up a story again. I have acne rosacea on my face, across my nose, and it is an annoying skin condition that produces ugly red spots and blemishes. I have topical medicine for it (metrogel), which may be keeping it from getting worse, but mostly hasn't seemed to do much. However, I've noticed in the last two weeks that my skin is peeling around my nose, and my red spots seem to be slowly clearing up. So, I've decided (here's my story) that it's the chemo, which targets fast growing cells in the body, that has attacked my rosacea and made it much less problematic. (I still say that once a person is in her 50s, she should not have problems with acne of any variety, but this ailment has not listened to my complaints.) Imagine! The chemo may have cleared up my skin!
So, I've felt tired but good today except for my appetite, which is in the pits. I kept thinking about milkshakes, so I finally made one this evening, and have to drink it in very slow sips to warm it in my mouth, but I feel like I'm breaking some rule in a fun way! The thing is, I will have to find something resembling dinner also, because I have to take my Xeloda tonight after dinner. Otherwise, I'd probably just pass on dinner altogether . . .
Thank you again for all of the responses, which make me smile every time I think about them. I so appreciate feeling that we are in an extended, long distance conversation in writing . . .
Showing posts with label spot. Show all posts
Showing posts with label spot. Show all posts
Friday, February 23, 2007
Monday, January 22, 2007
Scanxiety
I owe the title of this blog to one of those who commented on Leroy's blog recently about the anxiety that scans can bring. . . . scanxiety. I knew exactly what she meant.
I wrote this brief "poem" below last Thursday, when I was laid low by pre-scanxiety. Today I am home again, after having my CT scan this morning and having blood drawn for testing. And of course I've looked at the CT pictures, and I can see the new "damned spot" in the abdominal wall, although (by my inexact measurements) it only seems to be 1/3 again larger (from 1.5 cm to 1.9 or so). And something is going on with my kidneys - one of them didn't light up in the contrast dye. I don't know what that means, but I don't like it. Sometime today, I'll talk to the surgeon, Dr. M, and see what his response is to the scan, and what he thinks about my kidney. Until then, I'm going to grade some papers (yes, I do give homework early in the semester!) and sit under the sunlamp for a while.
Am I anxious? Yes, unfortunately.
What is to be done with all of my anxiety?
It fills my body, from tense toes to aching neck and head.
I long for my lost, if false, immortality.
I weep for the body I could count on
To carry me through the day reliably,
To think the thoughts needing thinking,
To shoulder the walking, talking, opening, eating, being
Of daily life.
Where can I put my anxiety?
In my mind, I release it, over and over again,
But the body stores it against my will and
Suddenly I am laid low by tension in all of my body,
Making it impossible to go through my day as planned.
I weep for the body I have lost, already.
I wrote this brief "poem" below last Thursday, when I was laid low by pre-scanxiety. Today I am home again, after having my CT scan this morning and having blood drawn for testing. And of course I've looked at the CT pictures, and I can see the new "damned spot" in the abdominal wall, although (by my inexact measurements) it only seems to be 1/3 again larger (from 1.5 cm to 1.9 or so). And something is going on with my kidneys - one of them didn't light up in the contrast dye. I don't know what that means, but I don't like it. Sometime today, I'll talk to the surgeon, Dr. M, and see what his response is to the scan, and what he thinks about my kidney. Until then, I'm going to grade some papers (yes, I do give homework early in the semester!) and sit under the sunlamp for a while.
Am I anxious? Yes, unfortunately.
What is to be done with all of my anxiety?
It fills my body, from tense toes to aching neck and head.
I long for my lost, if false, immortality.
I weep for the body I could count on
To carry me through the day reliably,
To think the thoughts needing thinking,
To shoulder the walking, talking, opening, eating, being
Of daily life.
Where can I put my anxiety?
In my mind, I release it, over and over again,
But the body stores it against my will and
Suddenly I am laid low by tension in all of my body,
Making it impossible to go through my day as planned.
I weep for the body I have lost, already.
Saturday, January 20, 2007
Second Opinion
This is a quick update on yesterday's appointment for a second opinion at Dana Farber Cancer Institute. I've received one concerned phone call, and Patty a worried email about the appointment because I said, in my post about Tia, that I'd write more later. I'm fine. The new oncologist, Dr. E, agrees that I have gallbladder cancer (I didn't expect a different result), and he gave me lots of information, answered many questions, and gave me much to think about. Last night and today I felt as if I my brain cells, like little cogs, were whirring and spinning, processing all of the information. And, frankly, last night I was overwhelmed by the day, having met Tia in the morning, and then spending three and a half hours on site at Dana Farber, including almost an hour and a half with the doctor.
Another detail: I have my next CT scan on Monday, and see my current oncologist, Dr. J, and my surgeon, Dr. M, next Wednesday. So I'm really in the middle of this month's process. With that disclaimer, here are some details. . . .
Dr E agrees that he would stage my cancer as Stage IV. I thought I'd heard that from my other doctors last summer, but then when I have been doing so well, I thought I'd misremembered or misunderstood. He also agrees that my cancer is slow growing, and that my progress has been surprising. His nurse practitioner called my cancer cells "indolent," a fancier word than "pokey," but meaning the same thing. Slow growing!
After examining the latest "spot" in my abdomen and looking at it on the November scan, their radiologist and Dr E agree that it's likely cancer, another implant. He gave me lots of options to consider with it, though. Have it surgically removed (but it's in the abdominal wall, which is more likely to have consequences for those stomach muscles afterward), have radiation, have chemo, do nothing. Part of the "do nothing" approach is to take the time to look into immunology treatment for gallbladder cancer. Why keep the "spot" if I'm considering immunotherapy? Sometimes they need an existing, live tumor to harvest cancer cells from the person being treated. Also, if I begin chemo and have a tumor that can be measured, it's a way of telling whether or not my cancer responds to that particular chemo. Otherwise, it's all guesswork.
There are efforts at developing immunotherapy for various cancers in the U.S. and across the globe. However, since gallbladder cancer is so rare - or exotic - there are probably no existing trials, but it's worth seeing if someone would want to do one. And, Dr. E said he thinks I'd be a great candidate for immunotherapy, because I'm asymptomatic and have slow growing cancer. After I've done some more research about the immunotherapy, and have more time, I'll post about it, including some links.
We also talked about chemotherapy, various reasons to begin it, and different levels - mild chemo, moderate, aggressive. No one had talked with me about that, and about considering my options and how to think about choosing. That was very helpful, and gives me good background as I meet with my doctors in the week ahead.
That's the quick version. I got the larger conversation about gallbladder cancer that I wanted when I scheduled this appointment, and now I have a lot to think about.
Another detail: I have my next CT scan on Monday, and see my current oncologist, Dr. J, and my surgeon, Dr. M, next Wednesday. So I'm really in the middle of this month's process. With that disclaimer, here are some details. . . .
Dr E agrees that he would stage my cancer as Stage IV. I thought I'd heard that from my other doctors last summer, but then when I have been doing so well, I thought I'd misremembered or misunderstood. He also agrees that my cancer is slow growing, and that my progress has been surprising. His nurse practitioner called my cancer cells "indolent," a fancier word than "pokey," but meaning the same thing. Slow growing!
After examining the latest "spot" in my abdomen and looking at it on the November scan, their radiologist and Dr E agree that it's likely cancer, another implant. He gave me lots of options to consider with it, though. Have it surgically removed (but it's in the abdominal wall, which is more likely to have consequences for those stomach muscles afterward), have radiation, have chemo, do nothing. Part of the "do nothing" approach is to take the time to look into immunology treatment for gallbladder cancer. Why keep the "spot" if I'm considering immunotherapy? Sometimes they need an existing, live tumor to harvest cancer cells from the person being treated. Also, if I begin chemo and have a tumor that can be measured, it's a way of telling whether or not my cancer responds to that particular chemo. Otherwise, it's all guesswork.
There are efforts at developing immunotherapy for various cancers in the U.S. and across the globe. However, since gallbladder cancer is so rare - or exotic - there are probably no existing trials, but it's worth seeing if someone would want to do one. And, Dr. E said he thinks I'd be a great candidate for immunotherapy, because I'm asymptomatic and have slow growing cancer. After I've done some more research about the immunotherapy, and have more time, I'll post about it, including some links.
We also talked about chemotherapy, various reasons to begin it, and different levels - mild chemo, moderate, aggressive. No one had talked with me about that, and about considering my options and how to think about choosing. That was very helpful, and gives me good background as I meet with my doctors in the week ahead.
That's the quick version. I got the larger conversation about gallbladder cancer that I wanted when I scheduled this appointment, and now I have a lot to think about.
Sunday, January 14, 2007
Another Damned Spot?
Yes, I think I feel another damned spot in my abdomen, this one a little deeper and a little larger, and also close to my incision. I actually felt this in November, before the other "spot" was removed, but I thought perhaps it was scar tissue. Now I can feel that it's more rounded than it was, that it's grown a bit, and I can see it on the scans from November when I look for it. Curses!
I called the surgeon, Dr. M, this week after "spotting" it on the scan, and he said that it could be another "implant" and that it would be more difficult to treat than the first since it's deeper. (It seems to be in the abdominal wall.) As I mentioned in my December 30 post, my CA 19-9 numbers have been rising, and I've known that this next scan would be important to determine whether or not to start "treatment" (read chemotherapy) besides "watchful waiting." Dr. M mentioned this next scan, and said that if there is sign of spread in my abdomen along with this "spot" and rising scores, treatment will probably be indicated. (And this is what the oncologist, Dr. J, said after the last CA 19-9 numbers.) In an amazing moment of putting a positive spin on my disappointing discovery, Dr. M said that if this "spot" is another small cancer tumor, and I begin chemotherapy, I'll be able to tell partly if the chemo is working by feeling whether there's a change in that spot. He is amazing! And, I suppose he's right!
Some folks asked me in person after my first spot was removed on December 4 if that was a metatasis, and I said no. At least as I understand it, that spot (and perhaps this one) was an "implant," which was a cell or collection of cells that escaped as the surgeons pulled out my sick gallbladder through the incision. As Dr. M described it, gallbladder cancer is particularly prone to escape and implant in or around the incision (and some cancers aren't prone to this; he mentioned colon cancer). So, the cell or collection of cells begins to grow, quickly or slowly, and creates a tumor. That's what my spot was. It's not a metatasis because it's not made of cells that have "hitch hiked" through the lymph or blood system, but rather because the cells were left where they settled in and grew. That's my understanding of the difference, at least.
These next two weeks are full of medical appointments, a scan, and quite likely, some decisions about how to proceed. I also begin teaching a new semester on this coming Tuesday. In the moment, I am holding an attitude of hope, of expectancy that I can handle whatever the news is, and whatever treatment follows.
I called the surgeon, Dr. M, this week after "spotting" it on the scan, and he said that it could be another "implant" and that it would be more difficult to treat than the first since it's deeper. (It seems to be in the abdominal wall.) As I mentioned in my December 30 post, my CA 19-9 numbers have been rising, and I've known that this next scan would be important to determine whether or not to start "treatment" (read chemotherapy) besides "watchful waiting." Dr. M mentioned this next scan, and said that if there is sign of spread in my abdomen along with this "spot" and rising scores, treatment will probably be indicated. (And this is what the oncologist, Dr. J, said after the last CA 19-9 numbers.) In an amazing moment of putting a positive spin on my disappointing discovery, Dr. M said that if this "spot" is another small cancer tumor, and I begin chemotherapy, I'll be able to tell partly if the chemo is working by feeling whether there's a change in that spot. He is amazing! And, I suppose he's right!
Some folks asked me in person after my first spot was removed on December 4 if that was a metatasis, and I said no. At least as I understand it, that spot (and perhaps this one) was an "implant," which was a cell or collection of cells that escaped as the surgeons pulled out my sick gallbladder through the incision. As Dr. M described it, gallbladder cancer is particularly prone to escape and implant in or around the incision (and some cancers aren't prone to this; he mentioned colon cancer). So, the cell or collection of cells begins to grow, quickly or slowly, and creates a tumor. That's what my spot was. It's not a metatasis because it's not made of cells that have "hitch hiked" through the lymph or blood system, but rather because the cells were left where they settled in and grew. That's my understanding of the difference, at least.
These next two weeks are full of medical appointments, a scan, and quite likely, some decisions about how to proceed. I also begin teaching a new semester on this coming Tuesday. In the moment, I am holding an attitude of hope, of expectancy that I can handle whatever the news is, and whatever treatment follows.
Thursday, December 07, 2006
That damn spot was Cancerous!
Today, I talked with the sugeon, Dr. M, who had talked this morning with the pathologist, although the written report has not yet been issued. The damn, pesky, annoying - but now gone! - spot was galllbladder cancer!
My intuition was so strong that it was cancerous, I didn't feel surprised. But, the news is so powerfully bad, I felt kicked in the stomach, knowing for certain that it had been a cancer nodule growing in my abdomen, under my skin, available to be touched. I hate this cancer! Cancer sucks!
Since talking with the doctor, I've wondered if I need to worry about whether or not I have to worry about the cancer spreading from where the "spot"/nodule was located. I didn't think to ask the surgeon. Probably next week, I'll talk with the oncologist, and see what he makes of the pathology report.
I am relieved, immensely relieved, that the spot is out of my body. I'm glad I trusted my intuition about it - assertiveness is valuable for cancer patients! - and I'm glad it's gone. But I really wish I had been wrong, and I wish it weren't cancerous.
My intuition was so strong that it was cancerous, I didn't feel surprised. But, the news is so powerfully bad, I felt kicked in the stomach, knowing for certain that it had been a cancer nodule growing in my abdomen, under my skin, available to be touched. I hate this cancer! Cancer sucks!
Since talking with the doctor, I've wondered if I need to worry about whether or not I have to worry about the cancer spreading from where the "spot"/nodule was located. I didn't think to ask the surgeon. Probably next week, I'll talk with the oncologist, and see what he makes of the pathology report.
I am relieved, immensely relieved, that the spot is out of my body. I'm glad I trusted my intuition about it - assertiveness is valuable for cancer patients! - and I'm glad it's gone. But I really wish I had been wrong, and I wish it weren't cancerous.
Monday, December 04, 2006
Spot, Gone!
This is a quick post, following outpatient surgery this morning using local anesthesia to remove the pesky spot referred to in several earlier posts. It's gone, off to the pathology lab for close examination.
Patty and I made a slow, very slow, long drive up to Beth Israel Deaconnes Hospital in Boston, for the procedure. The weather folks had predicted a messy commute, and they were right, with rain followed by heavy wet snow, and everyone seeming to have left early to beat the traffic! Still, we made it.
The procedure was simple, but totally weird. I could see the smoke rising off the cauterizing utensil they were using as they removed the spot . . . a smoking abdomen! Bizarre. Dr. M said that the "spot" was about 1 cm, and round like a marble. When he examined it before the surgery, he recognized that it felt different than it had in October when I went to see him about it. After removing it, he labeled it "suspicious," but we'll have to wait to see what pathology has to say about it. In any event, I'm glad it's out!
Since my last postings mentioning the spot, and Julie's "Out, out damn spot!" comment, we've all been quoting Lady Macbeth frequently. And now it's out, and I feel immensely relieved. Thank you to all of you who wrote here or by email, or expressed concern in person about my little procedure to remove that pesky spot. I very much appreciate all of the loving concern flowing to me and my family. And now I can focus on baking my Christmas cookies (an annual tradition for me) after teaching my last classes of the semester this week.
Patty and I made a slow, very slow, long drive up to Beth Israel Deaconnes Hospital in Boston, for the procedure. The weather folks had predicted a messy commute, and they were right, with rain followed by heavy wet snow, and everyone seeming to have left early to beat the traffic! Still, we made it.
The procedure was simple, but totally weird. I could see the smoke rising off the cauterizing utensil they were using as they removed the spot . . . a smoking abdomen! Bizarre. Dr. M said that the "spot" was about 1 cm, and round like a marble. When he examined it before the surgery, he recognized that it felt different than it had in October when I went to see him about it. After removing it, he labeled it "suspicious," but we'll have to wait to see what pathology has to say about it. In any event, I'm glad it's out!
Since my last postings mentioning the spot, and Julie's "Out, out damn spot!" comment, we've all been quoting Lady Macbeth frequently. And now it's out, and I feel immensely relieved. Thank you to all of you who wrote here or by email, or expressed concern in person about my little procedure to remove that pesky spot. I very much appreciate all of the loving concern flowing to me and my family. And now I can focus on baking my Christmas cookies (an annual tradition for me) after teaching my last classes of the semester this week.
Friday, October 20, 2006
Musings and Body Sensations
It's been a while since I posted on the blog, and I'm acutely aware of that. Some of it is that my real, full-time, paying job has been demanding more attention, and the full-time, non-paying job of cancer has slipped into second place. For now, at least. The other part is that I was out of town last week for a professional conference, in New Orleans, seeing colleagues I generally see only once a year and exploring the city, post-Katrina. The conference was good, New Orleans was both sad and hopeful (bittersweet, like cancer?), and seeing my long-distance friends and eating great food was wonderful.
My body has had a few sensations that have taken my attention. Last week, my abdomen was sore as it hasn't been since the summer. I puzzled and worried about it for a few days, and then remembered that I had carried a kayak for a few hundred yards at the beginning of the week. The soreness went away, and I realized that it was probably more weight than I should have carried, even 4 1/2 months post surgery.
Then there was the firm spot in my abdomen, toward the end of my surgical scar. I felt that almost two weeks ago for the very first time, and puzzled and worried about it, but knew I wouldn't do anything right away, as I was going to the conference. So I prodded and pushed and worried when I remembered it, and a week later, I described it to the nurse case manager from my HMO in a phone call. Since I'm seeing my primary care doctor this coming Monday, I told her that I would have my doctor check it out. Instead, she encouraged me to call my surgeon about it. She sounded worried for me, and I had wanted to talk to the surgeon anyway, so I called and got an appointment the next day.
The surgeon had a great explanation for it. He is 99% sure that it's a knot of thread, used to stitch up the fascia (under the skin). They started at the center point on my incision and stitched toward my side, and when they get to the end, they made a big knot. Although the thread will dissolve eventually, he said it's not unusual to feel it (or to see it during subsequent surgery) within a year of the surgery itself. And, if he's wrong and it's a little spot of cancer growing, it's in the fat tissue and they wouldn't do anything until they have a better sense about what's happening. So, he'll check out my next CT scan to see what it looks like.
We also talked about the possibility of removing my cancerous bile duct (called a Whipple procedure) if I continue to feel good and the cancer hasn't spread and I am one year or so post surgery. I almost hate to admit my hopefulness for this, because the future is as uncertain as ever, and I just keep working to take my life one day at a time. So, I go through my life as well as I can, and try not to project into the future too much. Still, when I got the clean scan in September, Patty said "Let's use this time to talk about a cure, a real cure!" I knew I wanted to talk about the possibility of surgery with the doctor who did the surgery last May.
My next CT is scheduled for Nov. 17, with the new oncologist on the job. I hate changing physicians under any circumstances, and now I have to get used to someone new!
So, that's it. Next week marks 5 months post diagnosis, and I continue to feel good. The quiet around my disease is welcome, yet strange, and feels like part of this shift from acute to chronic. I've had these little worries over the past two weeks, and I'm fine and I'm working and I'm enjoying my family and my life.
My body has had a few sensations that have taken my attention. Last week, my abdomen was sore as it hasn't been since the summer. I puzzled and worried about it for a few days, and then remembered that I had carried a kayak for a few hundred yards at the beginning of the week. The soreness went away, and I realized that it was probably more weight than I should have carried, even 4 1/2 months post surgery.
Then there was the firm spot in my abdomen, toward the end of my surgical scar. I felt that almost two weeks ago for the very first time, and puzzled and worried about it, but knew I wouldn't do anything right away, as I was going to the conference. So I prodded and pushed and worried when I remembered it, and a week later, I described it to the nurse case manager from my HMO in a phone call. Since I'm seeing my primary care doctor this coming Monday, I told her that I would have my doctor check it out. Instead, she encouraged me to call my surgeon about it. She sounded worried for me, and I had wanted to talk to the surgeon anyway, so I called and got an appointment the next day.
The surgeon had a great explanation for it. He is 99% sure that it's a knot of thread, used to stitch up the fascia (under the skin). They started at the center point on my incision and stitched toward my side, and when they get to the end, they made a big knot. Although the thread will dissolve eventually, he said it's not unusual to feel it (or to see it during subsequent surgery) within a year of the surgery itself. And, if he's wrong and it's a little spot of cancer growing, it's in the fat tissue and they wouldn't do anything until they have a better sense about what's happening. So, he'll check out my next CT scan to see what it looks like.
We also talked about the possibility of removing my cancerous bile duct (called a Whipple procedure) if I continue to feel good and the cancer hasn't spread and I am one year or so post surgery. I almost hate to admit my hopefulness for this, because the future is as uncertain as ever, and I just keep working to take my life one day at a time. So, I go through my life as well as I can, and try not to project into the future too much. Still, when I got the clean scan in September, Patty said "Let's use this time to talk about a cure, a real cure!" I knew I wanted to talk about the possibility of surgery with the doctor who did the surgery last May.
My next CT is scheduled for Nov. 17, with the new oncologist on the job. I hate changing physicians under any circumstances, and now I have to get used to someone new!
So, that's it. Next week marks 5 months post diagnosis, and I continue to feel good. The quiet around my disease is welcome, yet strange, and feels like part of this shift from acute to chronic. I've had these little worries over the past two weeks, and I'm fine and I'm working and I'm enjoying my family and my life.
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