This past Saturday, March 24, marked ten months since the major surgery that revealed that I have gallbladder cancer. The diagnosis sounded like a death sentence . . . rare, incurable cancer . . . many folks live only two to six months post diagnosis . . . we don't know how your disease will progress . . . stage IV cancer, with "distant" metastasis . . . if you take this trip to the southwest you need to watch out for a recurrence of jaundice, for other evidence of spread of the disease and seek treatment immediately . . . yes, it would be a good idea to know where the closest hospital is as you travel . . .
Those were some of the conversations we had with my medical providers. Ultimately, they didn't tell us not to take the trip, and they didn't give us any compelling reasons why we should stay home. I couldn't begin chemo for at least a month following the surgery, so we were only potentially delaying beginning treatment by two weeks. Then, surprise! We returned from our trip, I had no signs of jaundice, was clearly recovering well from the surgery, and the CT scan showed no progression of disease. That was the beginning of what proved to be 8 months of being asymptomatic (except for that pesky spot in my abdomen that was removed surgically in December, and was an implant, grown from cells accidentally deposited as they removed my cancerous gallbladder).
And now I know, and know of, folks who are 18 month post diagnosis and doing well, and folks with even more time who continue to fight the cholangiocarcinoma, and to experience a good quality of life. As spring begins to stir here in Massachusetts, I find my desire to fight the disease is strengthened. Why not order those bulbs to plant in the yard in May and watch them bloom over the summer? Why not expect to be here in a year to watch yet another spring arrive? (Well, writing "expect" reminds me of the warning to have "abundant expectancy, but not expectations;" see my post of December 11) But why not have hope and imagination and faith in my body's ongoing ability to fight this disease?
Last summer when I was first diagnosed, my friend Bev was the one who said to me, tearfully, "You need another spring, you deserve another spring." This can't be happening, and the disease can't take you that fast, was the heart of her point. She and I both love to garden, and sharing our growing stories and cuttings and plants has been a special joy in our relationship. I knew what she meant. With the coming of this spring, I feel a renewal of that determination.
With the arrival of spring, I also feel I'm beginning to emerge from the "shell shock" of the sudden appearance of this dangerous tumor in my abdomen, visible in January's scan. I thought after 8 months that anything growing would be a little slower to be dangerous, yet this came on like gangbusters, threatening the functioning of vital organs, and, honestly, scaring me to death. It was a winter tumor, and it should vanish now that spring is here!
Something Leroy wrote in his blog before we left on vacation has really stuck with me, and seemed to articulate some of the changes I've experienced internally since the initial panic and anxiety about my life threatening diagnosis. On March 8, this is what Leroy had to say:
"I still stand by what I said earlier. I'm not ready to die. At the same time, when my cancer came at me again, I did finally come to peace with the process. After all, I feel that I have lived a decent life. But there is a big difference between coming to grips with your own death and giving up on life. I don't think any of us ever give up. Even when the time may come that we choose to end treatment, that's not giving up. That's making a choice."
"A big difference between coming to grips with your own death and giving up on life." Those were words I needed to hear last summer when I was dealing with the intensity of my diagnosis. So, I'm grateful to Leroy for saying the words I still needed to hear, for putting words on my experience. I feel that these last months have been about coming to grips with my own death, recognizing that it's likely to come sooner than I ever expected, while still not giving up on life. There's so much I want to do, and see, and write, and be, before my life comes to an end.
Let's hope that this winter tumor shrinks in the face of the chemo, and gives me even more time than I could have imagined last summer.
Showing posts with label expectations. Show all posts
Showing posts with label expectations. Show all posts
Tuesday, March 27, 2007
Tuesday, January 02, 2007
What's changed in me in the last 7 Months?
Mulling over the arrival of a new year on the calendar, and that I'm still alive as 2007 has begun, I've been mentally listing some of the things that have changed in the 7 months, 9 days and some hours since my diagnosis of gallbladder cancer. Working on writing this post, I also remembered that I called this blog "Life Changing Cancer" for a reason. Even in August, I didn't feel that I was the same person I had been. So how have I changed?
In no particular order . . .
1. I think we have too much stuff, too many material possessions. I think I do, my kids do, my family does, Americans do, and I wonder what we are thinking. And I continue to struggle with where to put everything. For whatever reason, I didn't particularly think this before my diagnosis.
2. In keeping with #1, I find it easier to let go of things. I've been a collector all my life, saving all my favorite books, stones and seashells, and the elements of my varied craft projects, thinking I'd get back to them when I retired. I have carried my quilting fabric, books and patterns for years, through many moves, thinking I'd make quilts again. And I have quilted occasionally since I first learned how in the 70s, but I've never quilted like I did then. Last August, Patty, my friend Bev and I went through my finished quilt tops, and Bev took one home to have it finished. (I had made her a quilt in the 1970s, but it burned in a house fire a number of years ago.) In the fall, my younger sister, Carla, and I went through my containers of fabric, and cut pieces for quilts, and she took home a big box of fabric and pieces to work with. (Thinking about this, I realize I didn't really have to wait for a cancer diagnosis to move on some of these things!)
3. As you can see from #2, I no longer expect to be alive and doing projects in 30 years. I might be alive, but I no longer have that expectation, and it makes it easier to let go of things, and to make other choices. And if I am alive, maybe I'll be choosing some new craft projects!
4. I've done my best to identify the stressors in my life, and to reduce them whenever possible. I resigned from some of my work responsibilities in the summer, and I think more carefully before saying "yes" when asked to take on something new. As a result, I find it easier to say "no" when that's the right thing to do. I'm meditating regularly, and working consciously on stress relief.
5. I've been working on strengthening my spiritual self these past months. I felt connnected with my spirituality when this happened, but the diagnosis broke open something in me, something that wants more, wants to be more, and certainly wants my life to mean more.
6. I have a new empathy for people with chronic, life-threatening or terminal illness. I have been healthy all of my life, had my first surgery (and it was elective) at 52, and my first broken bone at 58. It's not that I blamed people with physical problems, it's that I just didn't understand their journey in some deep way because that had not been my life's path. Now, my new experience with the medical profession, and my readings of the stories of so many people's journey with cancer, have shifted my lack of understanding, my lack of empathy, for those, like me, in this situation.
7. I'm less likely to postpone joy. Last summer when our family traveled to the southwest for a long-planned "trip of a lifetime" to many national parks, Patty and I began to say "If not now, when?" We were more extravagant on that trip than we'd ever been (and we were still saying at campgrounds), and we didn't spend our life savings, but we have different priorities. When we talked about vacationing in the Caribbean in March 2007, we said "Let's go!" (and we're still staying at a campground). We will go back to St. John in the U.S. Virgin Islands in March, all of us, and if it's my last trip there, I will have gone to a place full of memories, and our family can make new memories. The last time there, Lucy was almost 5, and did some snorkeling while holding onto Patty, but now both kids can swim, and we suspect they will love snorkeling!
8. I frequently feel mortal. We all are, of course, but I didn't particularly feel mortal before this diagnosis. Some days I feel more mortal than others, but it's definitely a place I visit frequently.
Somehow, I think my list of changes was longer while I was washing dishes this afternoon, but this is what comes to me now. It's not an exhaustive list, but it's an honest one for the moment.
In no particular order . . .
1. I think we have too much stuff, too many material possessions. I think I do, my kids do, my family does, Americans do, and I wonder what we are thinking. And I continue to struggle with where to put everything. For whatever reason, I didn't particularly think this before my diagnosis.
2. In keeping with #1, I find it easier to let go of things. I've been a collector all my life, saving all my favorite books, stones and seashells, and the elements of my varied craft projects, thinking I'd get back to them when I retired. I have carried my quilting fabric, books and patterns for years, through many moves, thinking I'd make quilts again. And I have quilted occasionally since I first learned how in the 70s, but I've never quilted like I did then. Last August, Patty, my friend Bev and I went through my finished quilt tops, and Bev took one home to have it finished. (I had made her a quilt in the 1970s, but it burned in a house fire a number of years ago.) In the fall, my younger sister, Carla, and I went through my containers of fabric, and cut pieces for quilts, and she took home a big box of fabric and pieces to work with. (Thinking about this, I realize I didn't really have to wait for a cancer diagnosis to move on some of these things!)
3. As you can see from #2, I no longer expect to be alive and doing projects in 30 years. I might be alive, but I no longer have that expectation, and it makes it easier to let go of things, and to make other choices. And if I am alive, maybe I'll be choosing some new craft projects!
4. I've done my best to identify the stressors in my life, and to reduce them whenever possible. I resigned from some of my work responsibilities in the summer, and I think more carefully before saying "yes" when asked to take on something new. As a result, I find it easier to say "no" when that's the right thing to do. I'm meditating regularly, and working consciously on stress relief.
5. I've been working on strengthening my spiritual self these past months. I felt connnected with my spirituality when this happened, but the diagnosis broke open something in me, something that wants more, wants to be more, and certainly wants my life to mean more.
6. I have a new empathy for people with chronic, life-threatening or terminal illness. I have been healthy all of my life, had my first surgery (and it was elective) at 52, and my first broken bone at 58. It's not that I blamed people with physical problems, it's that I just didn't understand their journey in some deep way because that had not been my life's path. Now, my new experience with the medical profession, and my readings of the stories of so many people's journey with cancer, have shifted my lack of understanding, my lack of empathy, for those, like me, in this situation.
7. I'm less likely to postpone joy. Last summer when our family traveled to the southwest for a long-planned "trip of a lifetime" to many national parks, Patty and I began to say "If not now, when?" We were more extravagant on that trip than we'd ever been (and we were still saying at campgrounds), and we didn't spend our life savings, but we have different priorities. When we talked about vacationing in the Caribbean in March 2007, we said "Let's go!" (and we're still staying at a campground). We will go back to St. John in the U.S. Virgin Islands in March, all of us, and if it's my last trip there, I will have gone to a place full of memories, and our family can make new memories. The last time there, Lucy was almost 5, and did some snorkeling while holding onto Patty, but now both kids can swim, and we suspect they will love snorkeling!
8. I frequently feel mortal. We all are, of course, but I didn't particularly feel mortal before this diagnosis. Some days I feel more mortal than others, but it's definitely a place I visit frequently.
Somehow, I think my list of changes was longer while I was washing dishes this afternoon, but this is what comes to me now. It's not an exhaustive list, but it's an honest one for the moment.
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.
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