My concerns on Monday, looking at the scans, were well founded. I have a "recurrence" - a tumor - in the area where my gallbladder used to be, and where my cancerous bile duct was left. I think it's big - 4.5 cm x 3.7 - but the doctors don't seem to be particularly worried about its size. The really bad thing about this bad news is that the tumor is encroaching on my liver, my colon and my ureter - the tube that carries urine from the kidney. So, if it keeps growing, it could have a very bad impact on the functioning of those organs. I met with both the oncologist, Dr. J, and the surgeon, Dr. M, today, and got lots of information about what to watch out for. And, I've made a decision to begin chemotherapy.
I first got a preview of this tumor when Dr. M called me Monday afternoon to describe what he saw on the scan. He's pretty good at reading the scan, and saw the tumor, and described his concern. Then yesterday his assistant faxed over the radiologist's report on the reading, including details about the tumor, and my bloodwork, which isn't good for my liver, but Dr. J didn't think the numbers were that bad, compared to what he's seen. So, I've had two days to digest this information - and to get really, really upset about it. Tonight I'm a little calmer because information and a plan of action helps me feel less out of control.
While my conference with Dr. E at Dana Farber made me think about changing docs, for the moment I've pretty much decided to go with what's familiar, and stay at Beth Israel Hospital for my treatment. I have an appointment to begin treatment this Friday morning. (Yes, that's two days away.) I met the treatment nurse, Linda, and the nurse oncology coordinator, Sue, today, and had a "tour" of the room where they do the infusions. Came home with an armload of information, including lots of warnings about the side effects or potential side effects. The two drugs I'm planning to take (unless I change my mind tomorrow) are Xeloda (capecitabine), taken orally as a pill twice a day, and Oxaliplatin, taken by infusion once in three weeks.
As I anticipate this next phase of dealing with my disease, I would ask those of you following my journey to hold me in prayer and love and light, and to see me tolerating the chemo well. No side effects - few side effects - lots of good days still. I have apprehension, but the intrusion of this tumor makes entering chemo easier on balance. I hope to hold my expectancy and hope for the future.
Showing posts with label scans. Show all posts
Showing posts with label scans. Show all posts
Wednesday, January 24, 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.
Monday, December 11, 2006
Expectations
Expectations are dangerous things. We can have "good" expectations, or more accurately, expectations of good things to happen . . . "I'm looking forward to Christmas, it's going to be wonderful!" (words either of my children could speak at any moment in the next two weeks), and expectations of bad things to happen . . . "I'm worried that that pesky, damn spot of cancer in my abdomen was a metastasis, or can cause a metatasis because it connected to my lymph or blood system." (The last part is according to the pathology report that was available this past Friday, and these are thoughts I've been having a lot over the last few days.)
Why are either of these dangerous? While anticipation and yearning can be powerful, intense feelings, and windows to some of our internal process about an upcoming event, deciding how that event is likely to unfold is dangerous. I learned some of this perspective years ago when I took a weekend workshop with two women who then referred to their work as "The Love Project." They have since changed their name to Teleos Institute, and like most ongoing projects out in the world, they have a website.
"Have no expectations, but rather abundant expectancy" was one of the original "Love Principles" articulated by Arleen Lorrance of the then "Love Project." A full list of the principles can be found at their website, and I'm including them here as well. While they are essentially simple, they can also be unpacked to provide useful principles for changing the way we think about ourselves, our lives, and those we encounter on our life journey.
Receive all people as beautiful exactly as they are.
Be the change you want to see happen, instead of trying to change anyone else.
Create your own reality consciously.
Provide others with opportunities to give.
Have no expectations, but rather abundant expectancy.
Problems are opportunities.
As I thought about writing about expectations, expectancy, and the ideas of Diane K. Pike and Arleen Lorrance of Teleos Institute, I reflected on the number of times in the months since I began this blog that I have discussed and described some workshop I've attended in the past. So, I want to name that yes, I did attend a lot of workshops, that I saw them as part of my spiritual journey, and now I'm happy to name one or more pieces that I got from doing the work I did. At least the learning isn't all lost to time!
So, about my expectations. Okay, so I remember the principle, but I don't always live it fully, I admit. As time passed with my clean scans, I expected to feel delighted and relieved to reach the six month mark without needing treatment and without experiencing additional effects of the gallbladder cancer. Instead, I admit I've spent the last four weeks, since the week before my November 17 scan, worried. (I just counted the weeks, to see if my sense was indeed correct, that's it's been that long.) So, the six month anniversary of my diagnosis has come and gone, and I haven't been feeling lighthearted and pleased, but rather anxious and fearful.
How can I shift from my anxiety to a place of expectancy, or openness to the possibility of "good" things, and a trust that if "bad" things happen, I can handle them? Just asking the question helps me begin to think about it all differently. If I am committed to living fully in the time I have (and I am), then living in fear and anxiety is not fulfilling my deep desire. Feeling that desire, that yearning, and withdrawing my expectations of outcome and timing can be a good place to start. Don't misunderstand, it's not that I don't want to live many, many more years. It's just that I don't want to miss the moment, the present, the now of my experience because I'm worrying about what's going to happen next month, or in six months, or a year, or five years. I think that expectancy is about living in the now, and not in the unknown future. That's what I want, to be here now.
Why are either of these dangerous? While anticipation and yearning can be powerful, intense feelings, and windows to some of our internal process about an upcoming event, deciding how that event is likely to unfold is dangerous. I learned some of this perspective years ago when I took a weekend workshop with two women who then referred to their work as "The Love Project." They have since changed their name to Teleos Institute, and like most ongoing projects out in the world, they have a website.
"Have no expectations, but rather abundant expectancy" was one of the original "Love Principles" articulated by Arleen Lorrance of the then "Love Project." A full list of the principles can be found at their website, and I'm including them here as well. While they are essentially simple, they can also be unpacked to provide useful principles for changing the way we think about ourselves, our lives, and those we encounter on our life journey.
Receive all people as beautiful exactly as they are.
Be the change you want to see happen, instead of trying to change anyone else.
Create your own reality consciously.
Provide others with opportunities to give.
Have no expectations, but rather abundant expectancy.
Problems are opportunities.
As I thought about writing about expectations, expectancy, and the ideas of Diane K. Pike and Arleen Lorrance of Teleos Institute, I reflected on the number of times in the months since I began this blog that I have discussed and described some workshop I've attended in the past. So, I want to name that yes, I did attend a lot of workshops, that I saw them as part of my spiritual journey, and now I'm happy to name one or more pieces that I got from doing the work I did. At least the learning isn't all lost to time!
So, about my expectations. Okay, so I remember the principle, but I don't always live it fully, I admit. As time passed with my clean scans, I expected to feel delighted and relieved to reach the six month mark without needing treatment and without experiencing additional effects of the gallbladder cancer. Instead, I admit I've spent the last four weeks, since the week before my November 17 scan, worried. (I just counted the weeks, to see if my sense was indeed correct, that's it's been that long.) So, the six month anniversary of my diagnosis has come and gone, and I haven't been feeling lighthearted and pleased, but rather anxious and fearful.
How can I shift from my anxiety to a place of expectancy, or openness to the possibility of "good" things, and a trust that if "bad" things happen, I can handle them? Just asking the question helps me begin to think about it all differently. If I am committed to living fully in the time I have (and I am), then living in fear and anxiety is not fulfilling my deep desire. Feeling that desire, that yearning, and withdrawing my expectations of outcome and timing can be a good place to start. Don't misunderstand, it's not that I don't want to live many, many more years. It's just that I don't want to miss the moment, the present, the now of my experience because I'm worrying about what's going to happen next month, or in six months, or a year, or five years. I think that expectancy is about living in the now, and not in the unknown future. That's what I want, to be here now.
Sunday, November 19, 2006
More waiting, not much information . . .
I wasn't going to post anything until I meet with the oncologist, Dr. J, on Wednesday, but I know that many of you who read this are waiting for news.
On Friday, I had the CT scan and gave blood. I drove in on a rainy morning, arrived by 7:30, and was done by 10:00. I did discover that I could get a copy of the CT scan on CD (Thank you again, Woody, for letting me know that it's possible!), and I had them make a CD of my most recent scan, and the other three I've had done this year.
So, briefly, the surgeon, Dr. M, did call me on Friday night to say that he didn't see anything troublesome in my liver, but that, below that area, it was hard to read the scan. So, he's guardedly optimistic, but feels that he needs to see what the radiologist has to say in the written report. He could see the spot in my abdomen on my surgical scar, and said it looked troublesome. We're hoping that the radiologist report is in tomorrow, and he can call me, and have his secretary fax me the report. Still, he's not the oncologist, and that's where we'd be talking full interpretation and possible treatment.
On Friday afternoon and Saturday, I spent many hours learning to use the medical scan-reading software and reading my scans. Finally figured out a lot of it, although I don't understand a lot of what I see. Having the earlier scans, where no one was worried about the results, and the radiologist's reports from those scans, made it easier.
So, no real answers, and still lots of questions. Guardedly optimistic. I will post something on Wednesday night, Nov. 22, after we see the oncologist, even if it's a brief message with the outcome of the visit.
On Friday, I had the CT scan and gave blood. I drove in on a rainy morning, arrived by 7:30, and was done by 10:00. I did discover that I could get a copy of the CT scan on CD (Thank you again, Woody, for letting me know that it's possible!), and I had them make a CD of my most recent scan, and the other three I've had done this year.
So, briefly, the surgeon, Dr. M, did call me on Friday night to say that he didn't see anything troublesome in my liver, but that, below that area, it was hard to read the scan. So, he's guardedly optimistic, but feels that he needs to see what the radiologist has to say in the written report. He could see the spot in my abdomen on my surgical scar, and said it looked troublesome. We're hoping that the radiologist report is in tomorrow, and he can call me, and have his secretary fax me the report. Still, he's not the oncologist, and that's where we'd be talking full interpretation and possible treatment.
On Friday afternoon and Saturday, I spent many hours learning to use the medical scan-reading software and reading my scans. Finally figured out a lot of it, although I don't understand a lot of what I see. Having the earlier scans, where no one was worried about the results, and the radiologist's reports from those scans, made it easier.
So, no real answers, and still lots of questions. Guardedly optimistic. I will post something on Wednesday night, Nov. 22, after we see the oncologist, even if it's a brief message with the outcome of the visit.
Thursday, November 16, 2006
What to do while waiting . . .
What is there to do while waiting to take a test, and then wait for the test results, when the test isn't even one I can study for in order to ensure a better outcome? My CT scan is tomorrow, and, while I've made it through the week pretty well, with only low level anxiety, today has been harder.
I stayed home from work today, because I spent most of last night in the bathroom, having "gastrointestinal disturbance." I woke still feeling sick, and tired from not getting enough sleep, to actually go to work. So, this morning, I caught more sleep and slowly began to feel a little better. But then, I found myself restless, worried but trying not to worry, about tomorrow's scan. So, what to do?
Sharpen all of the pencils in the house. In a house with two school-age kids, pencils are hard to find, and even harder to find with a point. Tracking them down, sharpening them, and returning them to their various resting places was a totally engaging and satisfying activity for about half an hour.
Water all of the house plants. I'm always meaning to do this, but too busy, or it's evening (when it's not a good idea to water them), and sometimes too much time goes by between watering. Good for another half an hour (yes,I do have a few house plants!)
Go through all unopened junk mail (with a few bills and interesting pieces thrown in). I tossed out a lot of unopened envelopes from charities looking for donations (amazing how much mail you get when you make some charitable donations, and everyone wants your money), and from various sources. I also found a few unpaid bills that I need to attend to before I go for tomorrow for my CT scan.
Download all "updates" on my computer. Also time consuming, but not attention consuming. Will the new update for Windows Explorer actually fix the problems the last one had? I have no idea!
Contemplate making a new "scrapbooked" page for the front of Patty's daily calendar. She gets a calendar book that's 8 1/2 x 11" with a window on the first page. I personalize it for her with some pictures of the family in a scrapbooked page. I haven't done one yet this fall, and need to get busy! Perhaps that will be a weekend activity, because so far I've just thought about it.
So, those are a few of the lowkey things I've done to keep myself occupied today. And, I do actually have some good news about the delay between tomorrow's scan and seeing the oncologist (6 days, but who's counting?). I talked with my surgeon, Dr. M, from last summer, and he will read the scan online, and call me with his assessment, no later than Saturday morning. He also told me (Thanks, Woody, for the information about getting your scans on a CD) that I can get the visual images also, since they are part of my hospital record. He doesn't know if I can get the pictures the same day, but I can definitely get them. I'll find out more tomorrow.
As Thanksgiving approaches, I realize that I am immensely grateful for Dr. M, who is one medical person who actually gets it about the anxiety of waiting for test results. When I explained my concern, he offered to call me before I could ask. He said that with folks in remission, he frequently tells them to anticipate, with a six month test interval, five months and 29 days of relative peace of mind, and then a day of major anxiety. So, he'll call me Friday if he has a long enough break from his surgical schedule, or Saturday morning if he gets tied up.
Updates to follow as I find more things to do while waiting . . .
I stayed home from work today, because I spent most of last night in the bathroom, having "gastrointestinal disturbance." I woke still feeling sick, and tired from not getting enough sleep, to actually go to work. So, this morning, I caught more sleep and slowly began to feel a little better. But then, I found myself restless, worried but trying not to worry, about tomorrow's scan. So, what to do?
Sharpen all of the pencils in the house. In a house with two school-age kids, pencils are hard to find, and even harder to find with a point. Tracking them down, sharpening them, and returning them to their various resting places was a totally engaging and satisfying activity for about half an hour.
Water all of the house plants. I'm always meaning to do this, but too busy, or it's evening (when it's not a good idea to water them), and sometimes too much time goes by between watering. Good for another half an hour (yes,I do have a few house plants!)
Go through all unopened junk mail (with a few bills and interesting pieces thrown in). I tossed out a lot of unopened envelopes from charities looking for donations (amazing how much mail you get when you make some charitable donations, and everyone wants your money), and from various sources. I also found a few unpaid bills that I need to attend to before I go for tomorrow for my CT scan.
Download all "updates" on my computer. Also time consuming, but not attention consuming. Will the new update for Windows Explorer actually fix the problems the last one had? I have no idea!
Contemplate making a new "scrapbooked" page for the front of Patty's daily calendar. She gets a calendar book that's 8 1/2 x 11" with a window on the first page. I personalize it for her with some pictures of the family in a scrapbooked page. I haven't done one yet this fall, and need to get busy! Perhaps that will be a weekend activity, because so far I've just thought about it.
So, those are a few of the lowkey things I've done to keep myself occupied today. And, I do actually have some good news about the delay between tomorrow's scan and seeing the oncologist (6 days, but who's counting?). I talked with my surgeon, Dr. M, from last summer, and he will read the scan online, and call me with his assessment, no later than Saturday morning. He also told me (Thanks, Woody, for the information about getting your scans on a CD) that I can get the visual images also, since they are part of my hospital record. He doesn't know if I can get the pictures the same day, but I can definitely get them. I'll find out more tomorrow.
As Thanksgiving approaches, I realize that I am immensely grateful for Dr. M, who is one medical person who actually gets it about the anxiety of waiting for test results. When I explained my concern, he offered to call me before I could ask. He said that with folks in remission, he frequently tells them to anticipate, with a six month test interval, five months and 29 days of relative peace of mind, and then a day of major anxiety. So, he'll call me Friday if he has a long enough break from his surgical schedule, or Saturday morning if he gets tied up.
Updates to follow as I find more things to do while waiting . . .
Friday, November 03, 2006
Just Under the Surface
I lost it today. Had a phone call from the office manager for the new oncologist. (Did I mention that I HATE changing doctors?) It turns out that he is not willing to see me on the same day that I have the CT scan, and in fact, wants to wait until the radiology report on the scan is available. Yeeeks! That is at least three-four days . . . I've been feeling "normal" lately, feeling that I'm handling everything well, and the conversation with the new oncologist's assistant sent me into a tailspin.
So, my CT scan is still scheduled for Nov. 17, but I don't see the oncologist, Dr. J, until the following Wednesday, Nov. 22. That's right, the day before Thanksgiving. His assistant tried to schedule the appointment for the day after Thanksgiving, and I said I simply could not wait that long. "This may be my last Thanksgiving," I said to her. "I can't spend the day in total anxiety about the scan results." I haven't spoken with her before, and felt incredibly frustrated with the conversation, and with the fact that the folks in charge couldn't have coordinated the transition better. I have had the two appointments for at least a month; couldn't they have let me know sooner about the new plan? Couldn't they have let me know so that all of this wouldn't be happening just as Thanksgiving arrives?
For the last three weeks, I've been teaching, and advising students as they plan their courses for next semester. I've been talking with them about graduating next May, or December in a year, or even in four years. I've done it without thinking every single time that I hope I'm alive when this future event happens. I've been feeling good, feeling "normal" (in the new normal sense of the word), and then today I was right back in my fear and anxiety.
I've read in Leroy's blog and the blogs of others with cancer about the difficulty of waiting for test results. I experienced it myself last July when I had to wait a day and a half to talk with the oncologist after my CT, and I felt anxiety in my body like I had never, never experienced before. Then Dr. S (my former oncologist) said he could see me the same day, and that felt so much easier, more manageable. Now I'm back to the waiting, knowing already now, weeks away, that I'll need things to distract me from my anxiety about the test results.
So, all of this fear and anxiety under the surface. The new normal for me. Things seem so fine, feel good in so many ways, and then the uncertainty of my future jumps up again and smacks me in the face. And I want to say to all of you who love me and are reading this that I am feeling good. My energy is good, my body feels as if it continues, still, to heal from the surgery, but I can walk faster, longer, better than I could two months ago, and I don't get tired so fast. The little spot in my abdomen that I talked with the surgeon about a few weeks ago continues to trouble me at times, but I feel good.
It's just this pesky uncertainty, the not knowing, the not knowing what the cancer is doing. I continue to visualize the cancer dancing, skipping, flowing, moving with whatever locomotion it wants, to the beautiful sunset. What does the future hold? What wiil be the outcome of this next scan? I don't know.
So, my CT scan is still scheduled for Nov. 17, but I don't see the oncologist, Dr. J, until the following Wednesday, Nov. 22. That's right, the day before Thanksgiving. His assistant tried to schedule the appointment for the day after Thanksgiving, and I said I simply could not wait that long. "This may be my last Thanksgiving," I said to her. "I can't spend the day in total anxiety about the scan results." I haven't spoken with her before, and felt incredibly frustrated with the conversation, and with the fact that the folks in charge couldn't have coordinated the transition better. I have had the two appointments for at least a month; couldn't they have let me know sooner about the new plan? Couldn't they have let me know so that all of this wouldn't be happening just as Thanksgiving arrives?
For the last three weeks, I've been teaching, and advising students as they plan their courses for next semester. I've been talking with them about graduating next May, or December in a year, or even in four years. I've done it without thinking every single time that I hope I'm alive when this future event happens. I've been feeling good, feeling "normal" (in the new normal sense of the word), and then today I was right back in my fear and anxiety.
I've read in Leroy's blog and the blogs of others with cancer about the difficulty of waiting for test results. I experienced it myself last July when I had to wait a day and a half to talk with the oncologist after my CT, and I felt anxiety in my body like I had never, never experienced before. Then Dr. S (my former oncologist) said he could see me the same day, and that felt so much easier, more manageable. Now I'm back to the waiting, knowing already now, weeks away, that I'll need things to distract me from my anxiety about the test results.
So, all of this fear and anxiety under the surface. The new normal for me. Things seem so fine, feel good in so many ways, and then the uncertainty of my future jumps up again and smacks me in the face. And I want to say to all of you who love me and are reading this that I am feeling good. My energy is good, my body feels as if it continues, still, to heal from the surgery, but I can walk faster, longer, better than I could two months ago, and I don't get tired so fast. The little spot in my abdomen that I talked with the surgeon about a few weeks ago continues to trouble me at times, but I feel good.
It's just this pesky uncertainty, the not knowing, the not knowing what the cancer is doing. I continue to visualize the cancer dancing, skipping, flowing, moving with whatever locomotion it wants, to the beautiful sunset. What does the future hold? What wiil be the outcome of this next scan? I don't know.
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.
Saturday, October 07, 2006
Visualizing the Cancer
In two earlier posts, (Cancer: Call it Enemy or Call it Friend? and Naming the Relationship with Cancer, Pt. II, both from August), I wrote about the difficulty I was having trying to ascertain my relationship to my cancer. The "Cancer: Call it Enemy or Friend?" post drew quite a few impassioned responses. Those responses, my further thinking, conversations with friends, and meditation, have all helped me further clarify my relationship with the cancer.
In August, I was meditating and decided to "talk" to the cancer. At that point I didn't try to visualize it, I just had a conversation. I told the cancer not to rush, that there was no place in my body it needed to move to, and that it didn't need to be moving around. I told it that its presence endangers my life, and it needs to go. This may sound a little "rational," but it worked for me. And, I have to say that when I got my second clean scan, mid-September, I remembered that conversation, and had an odd feeling that somehow the cancer was cooperating, had been "listening." I was also struck that the oncologist said my cancer was "pokey." Just what I had envisioned!
In September while meditating, a visualization about the cancer came to me spontaneously. I imagined a beautiful sunset, full of reds, purples, oranges, pinks; a totally gorgeous sunset. I imaged the cells, arm in arm like Dorothy and the Tin Man, Cowardly Lion, and Scarecrow from "The Wizard of Oz" dancing and skipping and running toward the beautiful sunset. As they skip and dance, I wave good-bye to them, and say "Apoptosis, Guys!" (At some point in my wandering on the web, I learned that it's the word for cell death. Cell death occurs naturally and normally in our bodies as cells die and replace themselves. One problem with cancer cells as I understand it in my non-medical way, is that they reproduce quickly, and perhaps don't die as fast as we would like.)
Now here's another really odd thing. After writing the previous paragraph, I just looked up "apoptosis" in the online dictionary, and there is an online medical dictionary that has this definition: "Programmed cell death as signalled by the nuclei in normally functioning human and animal cells when age or state of cell health and condition dictates. An active process requiring metabolic activity by the dying cell . . . . Cells that die by apoptosis do not usually elicit the inflammatory responses that are associated with necrosis, though the reasons are not clear. Cancerous cells, however, are unable to experience the normal cell transduction or apoptosis-driven natural cell death process." I didn't know that! Here I've been visualizing the cancer cells having a "normal" cell death, when it seems they don't know how! Maybe they can learn!
So, when I meditate, or see the sunset, or think about the cancer cells, I wave to them, see them dancing into this beautiful sunset, and say "Apoptosis, guys, apotosis!" Is it working? I don't know, but I hope so. And, it has the added benefit of giving me a giggle as I imagine the cancer cells dancing and skipping into the sunset. Laughing is definitely good for my soul and my body. Bye, cancer cells!
In August, I was meditating and decided to "talk" to the cancer. At that point I didn't try to visualize it, I just had a conversation. I told the cancer not to rush, that there was no place in my body it needed to move to, and that it didn't need to be moving around. I told it that its presence endangers my life, and it needs to go. This may sound a little "rational," but it worked for me. And, I have to say that when I got my second clean scan, mid-September, I remembered that conversation, and had an odd feeling that somehow the cancer was cooperating, had been "listening." I was also struck that the oncologist said my cancer was "pokey." Just what I had envisioned!
In September while meditating, a visualization about the cancer came to me spontaneously. I imagined a beautiful sunset, full of reds, purples, oranges, pinks; a totally gorgeous sunset. I imaged the cells, arm in arm like Dorothy and the Tin Man, Cowardly Lion, and Scarecrow from "The Wizard of Oz" dancing and skipping and running toward the beautiful sunset. As they skip and dance, I wave good-bye to them, and say "Apoptosis, Guys!" (At some point in my wandering on the web, I learned that it's the word for cell death. Cell death occurs naturally and normally in our bodies as cells die and replace themselves. One problem with cancer cells as I understand it in my non-medical way, is that they reproduce quickly, and perhaps don't die as fast as we would like.)
Now here's another really odd thing. After writing the previous paragraph, I just looked up "apoptosis" in the online dictionary, and there is an online medical dictionary that has this definition: "Programmed cell death as signalled by the nuclei in normally functioning human and animal cells when age or state of cell health and condition dictates. An active process requiring metabolic activity by the dying cell . . . . Cells that die by apoptosis do not usually elicit the inflammatory responses that are associated with necrosis, though the reasons are not clear. Cancerous cells, however, are unable to experience the normal cell transduction or apoptosis-driven natural cell death process." I didn't know that! Here I've been visualizing the cancer cells having a "normal" cell death, when it seems they don't know how! Maybe they can learn!
So, when I meditate, or see the sunset, or think about the cancer cells, I wave to them, see them dancing into this beautiful sunset, and say "Apoptosis, guys, apotosis!" Is it working? I don't know, but I hope so. And, it has the added benefit of giving me a giggle as I imagine the cancer cells dancing and skipping into the sunset. Laughing is definitely good for my soul and my body. Bye, cancer cells!
Friday, September 22, 2006
The Amusement Park - Not!
Since many/most of you reading this blog are friends and family, you already know this, but I need to write about it. Cancer affects far more than the person diagnosed, and even that person's immediate family and caregivers. I suppose that it's true of other acute and/or chronic illnesses, but I haven't had any of those diseases. I have cancer, and it has turned my life, my family's life, and those of many of my friends, upside down. Inside out. Backwards. With a stomach-churning drop in between. A modern day roller coaster ride.
I've written a lot about the impact of the diagnosis on me since I began this blog, not quite two months ago. I haven't written directly about the impact on my family. My immediate family consists of Patty who is my life partner, lesbian lover, Massachusetts spouse, and our two children, Lucy, age 10 and Nathaniel, age 8. Although I turned 59 this summer, I do have a young family, and it has been especially painful to contemplate not being here with them as they grow into adolescence and adulthood. Patty is my anchor, and the one who makes me laugh.
The first time we saw the oncologist, last June, a week past surgery, we waited a long time for the doctor to come into the room, and I was feeling incredibly anxious. "Make me laugh," I said to her, and she did. It was cancer humor, grim humor, very funny to us at the time, but not so good in translation, so I won't try to recreate it. At the appointment, the doctor stressed the importance of starting treatment as soon as possible (although not until at least a month had passed post surgery). After, I would double check my recollection of something he said against Patty's memory. We had taken a few notes, but I wondered about tone of voice, extra meaning, also.
In July, when we saw the oncologist a second time, he said that I looked good, didn't seem to be jaundiced, and probably wouldn't need treatment. We talked for a while about my diagnosis and his proposal for a clinical trial when treatment is needed, and, toward the end, I turned to Patty and asked if she had any questions. "Yes," she said. "Where is the urgency? We came back early from a planned 5 1/2 week trip out west because you said she had to start treatment right away! We could be in Yosemite National Park right now!" I appreciated her directness! He had the grace to admit that his earlier sense of urgency was unnecessary, and to apologize. "Things have changed," he said, because I was doing so well post-diagnosis.
After that visit, we talked about dealing with the slowing down of the pace of the disease from the initial diagnosis, and our new roles. Patty commented that when her job was to visit me daily in the hospital, and then to support my recovery when I returned home, she knew what to do. Now, just waiting, what was her job, she wanted to know. I confessed my uncertainty about this unfamiliar terrain, but replied also that her job was "to love me." "I am," she said, "but I still feel like I should be doing something."
This past Monday, Patty sat with me in the waiting room for the CT scan, watching me drink the barium, then leave for the scan. After, we went upstairs to see the oncologist. He was nice enough to actually look at a few pictures I'd brought of our trip out west, and to make small talk. I wrote in my last post that his review of the scan indicated no need for treatment now. When we left, I was relieved and happy, and so was Patty, but she was also feeling, she said, like she was riding a tilt-a-whirl at the amusement park. First we prepare for this, then that. Something is different, and we are up, or we are down. The shifts themselves are exhausting, even when the news is good.
As we talked this week, we finally found an image that works for where we are now. "I feel as if I've been sprinting and preparing to keep sprinting. It's really tiring." Patty said. "Things have all happened so fast. Now, almost four months post your diagnosis, I guess I need to think of this as a marathon, not a sprint any longer."
Sports metaphors aside, as I drafted this post and talked with Patty about how to represent her role in all of this, we noted with irony how often images from the amusement park speak to our experiences. The images of roller coaster rides, the tilt a whirl, the"mad teacups," even the merry go round, keep coming to us. Why do we in our culture like these rides? Is it a chance to face our fear and conquer it? Well, the amusement park assortment of rides that makes up cancer definitely brings up our fear, in a real and palpable way. Still, I wish we could get off the Cancer Ride.
I've written a lot about the impact of the diagnosis on me since I began this blog, not quite two months ago. I haven't written directly about the impact on my family. My immediate family consists of Patty who is my life partner, lesbian lover, Massachusetts spouse, and our two children, Lucy, age 10 and Nathaniel, age 8. Although I turned 59 this summer, I do have a young family, and it has been especially painful to contemplate not being here with them as they grow into adolescence and adulthood. Patty is my anchor, and the one who makes me laugh.
The first time we saw the oncologist, last June, a week past surgery, we waited a long time for the doctor to come into the room, and I was feeling incredibly anxious. "Make me laugh," I said to her, and she did. It was cancer humor, grim humor, very funny to us at the time, but not so good in translation, so I won't try to recreate it. At the appointment, the doctor stressed the importance of starting treatment as soon as possible (although not until at least a month had passed post surgery). After, I would double check my recollection of something he said against Patty's memory. We had taken a few notes, but I wondered about tone of voice, extra meaning, also.
In July, when we saw the oncologist a second time, he said that I looked good, didn't seem to be jaundiced, and probably wouldn't need treatment. We talked for a while about my diagnosis and his proposal for a clinical trial when treatment is needed, and, toward the end, I turned to Patty and asked if she had any questions. "Yes," she said. "Where is the urgency? We came back early from a planned 5 1/2 week trip out west because you said she had to start treatment right away! We could be in Yosemite National Park right now!" I appreciated her directness! He had the grace to admit that his earlier sense of urgency was unnecessary, and to apologize. "Things have changed," he said, because I was doing so well post-diagnosis.
After that visit, we talked about dealing with the slowing down of the pace of the disease from the initial diagnosis, and our new roles. Patty commented that when her job was to visit me daily in the hospital, and then to support my recovery when I returned home, she knew what to do. Now, just waiting, what was her job, she wanted to know. I confessed my uncertainty about this unfamiliar terrain, but replied also that her job was "to love me." "I am," she said, "but I still feel like I should be doing something."
This past Monday, Patty sat with me in the waiting room for the CT scan, watching me drink the barium, then leave for the scan. After, we went upstairs to see the oncologist. He was nice enough to actually look at a few pictures I'd brought of our trip out west, and to make small talk. I wrote in my last post that his review of the scan indicated no need for treatment now. When we left, I was relieved and happy, and so was Patty, but she was also feeling, she said, like she was riding a tilt-a-whirl at the amusement park. First we prepare for this, then that. Something is different, and we are up, or we are down. The shifts themselves are exhausting, even when the news is good.
As we talked this week, we finally found an image that works for where we are now. "I feel as if I've been sprinting and preparing to keep sprinting. It's really tiring." Patty said. "Things have all happened so fast. Now, almost four months post your diagnosis, I guess I need to think of this as a marathon, not a sprint any longer."
Sports metaphors aside, as I drafted this post and talked with Patty about how to represent her role in all of this, we noted with irony how often images from the amusement park speak to our experiences. The images of roller coaster rides, the tilt a whirl, the"mad teacups," even the merry go round, keep coming to us. Why do we in our culture like these rides? Is it a chance to face our fear and conquer it? Well, the amusement park assortment of rides that makes up cancer definitely brings up our fear, in a real and palpable way. Still, I wish we could get off the Cancer Ride.
Monday, September 18, 2006
Good News!
As you know, I was scheduled for a CT scan this morning, followed by a meeting with the oncologist. As he reviewed the pictures from the CT scan, he saw nothing that indicated change from my last scan in July, and so he recommends no treatment right now. As a results, I got to hear the words (aside from "you're cured!") that I most wanted to hear: "See you in two months."
He even went so far to say that about 10% of those with gallbladder cancer have a slower growing type (than the other 90%), and judging from how good I feel and the fact that the scan indicated no cancer growth, I could be in that group. He even called my cancer cells "pokey!" That was a word I was delighted to hear.
I'm also pleased to report that they appear to be experimenting with flavors for the barium drink they provide to help with contrast on the CT scan. I had "banana smoothee" today, and I noticed a "berry smoothee" in the room, and a "strawberry" flavor as well. I was so thirsty by the time I arrived for the scan, it made the barium go down much easier. This was my third CT, and I'm feeling like an old hand at it!
Thank you to each of you reading this, posting or emailing or calling or simply holding me in your thoughts and prayers for all of the positive energy flowing my way. I am so grateful for all of the loving support, and feel it deeply, and feel that it helps me in staying grounded on this roller coaster of a ride called cancer.
He even went so far to say that about 10% of those with gallbladder cancer have a slower growing type (than the other 90%), and judging from how good I feel and the fact that the scan indicated no cancer growth, I could be in that group. He even called my cancer cells "pokey!" That was a word I was delighted to hear.
I'm also pleased to report that they appear to be experimenting with flavors for the barium drink they provide to help with contrast on the CT scan. I had "banana smoothee" today, and I noticed a "berry smoothee" in the room, and a "strawberry" flavor as well. I was so thirsty by the time I arrived for the scan, it made the barium go down much easier. This was my third CT, and I'm feeling like an old hand at it!
Thank you to each of you reading this, posting or emailing or calling or simply holding me in your thoughts and prayers for all of the positive energy flowing my way. I am so grateful for all of the loving support, and feel it deeply, and feel that it helps me in staying grounded on this roller coaster of a ride called cancer.
Friday, September 15, 2006
Fear, Anxiety and Trepidation
Actually, I'm trying not to feel any of those things as my next CT scan approaches. Some of you know that I was originally scheduled for the next scan today, September 15. However, a few weeks ago, the oncologist's assistant called me to say that he would be out of the office today. I am rescheduled for the CT scan, followed quickly by an appointment with him, both early on Monday, Sept. 18. So, for those of you praying hard for me today, keep it up, and know that the test is still a few days away. And, for those of you watching and waiting, I promise to post something by the end of the day on Monday so that you will know what's in my near future, medically speaking.
Trying not to feel fear and anxiety, trying not to think about cancer, trying not to worry about whether or not the cancer has spread, and the CT scan will indicate that the time for chemo has arrived, is incredibly, impossibly difficult. Still, I'm working on it.
Work this week has been a good antidote to worry. Thinking about and teaching my classes, looking ahead to the next few weeks of material to cover, connecting with friends and colleagues in the city; all this has helped fill my mind so that I'm not thinking about cancer. I also devised a new routine for work weeks. On the night before I go to work, I am not reading any gallbladder discussion boards, not reading stories of the struggles of others with their chemo and with this disease, not reading any of the descriptions of gallbladder cancer. A simple discipline, but I felt that I slept better and greeted each day with a clearer mind.
And, I am trying not to suffer over my suffering. That phrase came back to me this afternoon, and I actually discovered its source by googling it. Turns out it's not from the Bible, not from a Buddhist teaching (although many of them are about suffering), but it is from the Book of Runes. Many years ago, as a spiritual discipline, I drew one rune each morning to focus my meditation and give me some words of wisdom as I began my day. It seems that Rune #21, Thurisaz - Gateway, is the source of this line. It reads: "When you are undergoing difficulties, remember: The quality of your passage depends upon your attitude and upon the clarity of your intention. Be certain that you are not suffering over your suffering."
Since this out-of-control situation began, I have been powerfully aware that the only thing I have control over is how I respond to this hand dealt. I see these lines as reminding me that, even as this weekend unfolds and I go for the test and appointment on Monday, how I anticipate and respond to what happens is up to me.
I don't know that I want to use a visualization presented earlier in the text about this rune, but it is intriguing to contemplate. "Visualize yourself standing before a gateway on a hilltop. Your entire life lies out behind you and below. Before you step through, pause and review the past: the learning and the joys, the victories and the sorrows - everything it took to bring you here. Observe it all, bless it all, release it all. For in letting go of the past you reclaim your power. Step through the gateway now."
Having written all of this, I feel as if I've come full circle. I hate having cancer. I hate feeling the fear, anxiety and trepidation, and then feeling I need to rein them in. I hate having the life circumstance that makes me face all of this. The things I used to fret about; relationship difficulties, completing all of the work I would commit to do, struggling to find time to exercise and eat well, the endless list that marks so many of our lives in this day and time, they all seem like such small things. I want my life back. The life I had before cancer.
Trying not to feel fear and anxiety, trying not to think about cancer, trying not to worry about whether or not the cancer has spread, and the CT scan will indicate that the time for chemo has arrived, is incredibly, impossibly difficult. Still, I'm working on it.
Work this week has been a good antidote to worry. Thinking about and teaching my classes, looking ahead to the next few weeks of material to cover, connecting with friends and colleagues in the city; all this has helped fill my mind so that I'm not thinking about cancer. I also devised a new routine for work weeks. On the night before I go to work, I am not reading any gallbladder discussion boards, not reading stories of the struggles of others with their chemo and with this disease, not reading any of the descriptions of gallbladder cancer. A simple discipline, but I felt that I slept better and greeted each day with a clearer mind.
And, I am trying not to suffer over my suffering. That phrase came back to me this afternoon, and I actually discovered its source by googling it. Turns out it's not from the Bible, not from a Buddhist teaching (although many of them are about suffering), but it is from the Book of Runes. Many years ago, as a spiritual discipline, I drew one rune each morning to focus my meditation and give me some words of wisdom as I began my day. It seems that Rune #21, Thurisaz - Gateway, is the source of this line. It reads: "When you are undergoing difficulties, remember: The quality of your passage depends upon your attitude and upon the clarity of your intention. Be certain that you are not suffering over your suffering."
Since this out-of-control situation began, I have been powerfully aware that the only thing I have control over is how I respond to this hand dealt. I see these lines as reminding me that, even as this weekend unfolds and I go for the test and appointment on Monday, how I anticipate and respond to what happens is up to me.
I don't know that I want to use a visualization presented earlier in the text about this rune, but it is intriguing to contemplate. "Visualize yourself standing before a gateway on a hilltop. Your entire life lies out behind you and below. Before you step through, pause and review the past: the learning and the joys, the victories and the sorrows - everything it took to bring you here. Observe it all, bless it all, release it all. For in letting go of the past you reclaim your power. Step through the gateway now."
Having written all of this, I feel as if I've come full circle. I hate having cancer. I hate feeling the fear, anxiety and trepidation, and then feeling I need to rein them in. I hate having the life circumstance that makes me face all of this. The things I used to fret about; relationship difficulties, completing all of the work I would commit to do, struggling to find time to exercise and eat well, the endless list that marks so many of our lives in this day and time, they all seem like such small things. I want my life back. The life I had before cancer.
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