Let me start by saying that I have no idea of the answer to the question asked. I'm not a scientist, not a researcher, I have only a general lay understanding of what cancer cells are and how they come to be. But, in my exploration of blogs written by others with cancer, (this time from a blog by Teresa, who has oral cancer) I came across a link to a website that presents an animation of the inner life of a cell.
The animation is facinating, accompanied by wonderful piano music, and presents elements of cell life that I've never seen before. The Inner Life of a Cell is worth watching, perhaps over and over.
When I watch, I wonder if seeing the animation can somehow help my cancer cells "learn" how they are supposed to be, if they were healthy, functional cells. As I asked before, I wonder if cancer cells can learn, can change, can be different from their mutated selves. Can they be normal? So, the scientists may say not, but who knows? The more I learn about cancer and cancer treatment, the more I see that it's both a science and an art, and that so much is unknown.
I want to know more about how healthy cells function when I see this, about the elements of a cell. There is information from the producers of the animation, but it focuses more on how they created the animation, rather than the science. You can read what the animators say here. Apparently, the animation was created for Harvard University biology students.
So, I watch this animation and I wonder "Can Cancer Cells Change?" Or, do they just need to die and stop threatening the life of those, like me, that they live in?
Saturday, October 28, 2006
Monday, October 23, 2006
Who Knew?
Five months ago tomorrow, I was diagnosed with gallbladder cancer, and I was told that typically, folks live two to six months following diagnosis. Who knew that five months later I would be working, feeling good, still recovering from surgery, but showing no signs (to date) of the cancer spreading? Who knew?
At the time, I took on my mortality as fully as we can while alive and feeling essentially healthy. That's why one of the first questions I asked when I began this blog was "If you had just six months or a year to live, would you want to know?" And if you would want to know, how would that knowledge impact your life, day to day?
Taking on my mortality, and what seemed to be impending death, I wondered if I'd be alive to see the "06 midterm election" results, now two weeks away. I wondered where in the house my hospice bed should go. I wondered how I could possibly explain to my children that this illness had come on so unexpectedly, and that I was about to leave them with so little notice, so little time to say good-bye, to hug and kiss and love enough for the future time to be missed. And, more mundanely, I thought about some of my favorite television shows, and wondered how the plot would evolve in the fall, and then in the winter, and spring. Less mundanely, I thought I would not be able to teach again, and I grieved the thought of not teaching the new freshman class I had been prepping for months (and that I took to see the "Body Worlds" exhibit I wrote about a few weeks ago).
I no longer take my life, my continuing life, for granted, and I realize that tomorrow the proverbial bus could strike me, and then I would have died within that six month window. I do not assume that the good news of no evidence of cancer will continue forever, or even as long as I want it to.
And, I am grateful for the experiences these last five months have brought; the opportunities to love deeply; to laugh uproariously; to meditate intentionally and converse with those life threatening cancer cells; to stand with my students and explore new territory, new information, new ideas; to allow others to love me well and to express their care and concern in words and deeds.
I feel sadness with the changing season, watching the dying, browning leaves spreading over the yard, tree branches baring for winter. And I also feel gratitude to be here to see the season change. It was early summer when I was diagnosed five months ago. I have lived a summer and most of a fall since then, and I am grateful. And I wish for many, many more seasons to change during the span of my life.
But, five months ago, who knew?
At the time, I took on my mortality as fully as we can while alive and feeling essentially healthy. That's why one of the first questions I asked when I began this blog was "If you had just six months or a year to live, would you want to know?" And if you would want to know, how would that knowledge impact your life, day to day?
Taking on my mortality, and what seemed to be impending death, I wondered if I'd be alive to see the "06 midterm election" results, now two weeks away. I wondered where in the house my hospice bed should go. I wondered how I could possibly explain to my children that this illness had come on so unexpectedly, and that I was about to leave them with so little notice, so little time to say good-bye, to hug and kiss and love enough for the future time to be missed. And, more mundanely, I thought about some of my favorite television shows, and wondered how the plot would evolve in the fall, and then in the winter, and spring. Less mundanely, I thought I would not be able to teach again, and I grieved the thought of not teaching the new freshman class I had been prepping for months (and that I took to see the "Body Worlds" exhibit I wrote about a few weeks ago).
I no longer take my life, my continuing life, for granted, and I realize that tomorrow the proverbial bus could strike me, and then I would have died within that six month window. I do not assume that the good news of no evidence of cancer will continue forever, or even as long as I want it to.
And, I am grateful for the experiences these last five months have brought; the opportunities to love deeply; to laugh uproariously; to meditate intentionally and converse with those life threatening cancer cells; to stand with my students and explore new territory, new information, new ideas; to allow others to love me well and to express their care and concern in words and deeds.
I feel sadness with the changing season, watching the dying, browning leaves spreading over the yard, tree branches baring for winter. And I also feel gratitude to be here to see the season change. It was early summer when I was diagnosed five months ago. I have lived a summer and most of a fall since then, and I am grateful. And I wish for many, many more seasons to change during the span of my life.
But, five months ago, who knew?
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!
Thursday, October 05, 2006
What, Me Worry?
What does a person with cancer worry about? Everything! Or, at least it seems that way. I started to call this entry "What do people with cancer worry about?" but I realized I can't speak for everyone. Well, I do know some of the things others with cancer worry about, because I read them online. Reading Leroy's blog, and comments there, reading the discussion boards of others with gallbladder or bile duct cancer (cholangiocarcinoma), I see that lots of folks are worried about their treatment not being effective, or, if in remission, that their cancer will come back. Many of us with cancer, and our friends and family members, are worrying about suffering, and about dying before our time. Those of us not currently having symptoms of our cancer worry about the symptoms returning. We worry about needing treatment.
I am definitely in that group, worrying and then trying not to worry about twinges in my abdomen, a small ache here, soreness there. Last week, I had indigestion for a few days, and it brought me back to the week before I was hospitalized last May. (I want to say now that I think, logically, that my indigestion was caused because I kept forgetting to take the Protonix prescribed by my doctors, the only drug I'm still on post surgery. Protonix is a "proton pump inhibitor" drug that inhibits the production of stomach acid, and keeps indigestion down.)
So, my indigestion story: Last May I was called to jury duty, and finally sat on a jury. At lunch on Monday, they set us loose, and I went down the street and, for lunch, bought a turkey sub which happened to come with tasty raw onions. Later, I had indigestion. Foolishly, on Tuesday I bought the same lunch, forgetting about the indigestion. Two days later, my urine changed color, and three days after that, my skin began to itch. So, my "story" about my blocked bile duct is that the final straw was caused by those raw onions! Obviously, the cancer had been growing for a while, and I don't "blame" those onions for my blocked bile duct, but the association is there for me. Once my bile duct was blocked, nothing tasted or sat quite right, and I had a rough week before going to the doctor's office. Having indigestion for two days last week reminded me of those days and brought up my fear about a repeat of the days before my hospitalization and then my surgery.
I worry about the future. I worry about teaching next fall, about staying well long enough to continue with my life, to see Lucy move into junior high school, and then high school, to see Nathaniel compete in gymnastics for many more years, to grow out the two front teeth he's lost, and develop into a young man.
I worry about getting a bad CT scan and then needing chemo. Then, I worry about the effects of the chemo, and I try not to worry, because I don't want to anticipate how my body will react. I worry about worrying, and then I try not to worry. Some days since my last clean scan, I have thought only occasionally about cancer, about having cancer, and some days I can't seem to think about anything else.
After I wrote the first part of this, I had a conversation with Patty about this Sunday's sermon. (Patty is a minister, so most weeks, she has a sermon to write for Sunday service.) Our conversation reminded me of the Serenity Prayer, one so central to Alcoholics Anonymous, and one which speaks to so many of us. I think it's what I need to remember when I worry.
God,
Grant me the Serenity to accept the things I cannot change;
The Courage to change the things I can; and
The Wisdom to know the difference.
I can't change what's happened in my body, but I can change how I feel about it. And when I worry, I can recognize that what I worry about is out of my control, and release it. I also want to remind myself that my goal since my diagnosis has been to live in the moment. When I worry, I project into the future and let go of the present moment. Serenity. Leting go of worry about the future. Being in the moment.
I am definitely in that group, worrying and then trying not to worry about twinges in my abdomen, a small ache here, soreness there. Last week, I had indigestion for a few days, and it brought me back to the week before I was hospitalized last May. (I want to say now that I think, logically, that my indigestion was caused because I kept forgetting to take the Protonix prescribed by my doctors, the only drug I'm still on post surgery. Protonix is a "proton pump inhibitor" drug that inhibits the production of stomach acid, and keeps indigestion down.)
So, my indigestion story: Last May I was called to jury duty, and finally sat on a jury. At lunch on Monday, they set us loose, and I went down the street and, for lunch, bought a turkey sub which happened to come with tasty raw onions. Later, I had indigestion. Foolishly, on Tuesday I bought the same lunch, forgetting about the indigestion. Two days later, my urine changed color, and three days after that, my skin began to itch. So, my "story" about my blocked bile duct is that the final straw was caused by those raw onions! Obviously, the cancer had been growing for a while, and I don't "blame" those onions for my blocked bile duct, but the association is there for me. Once my bile duct was blocked, nothing tasted or sat quite right, and I had a rough week before going to the doctor's office. Having indigestion for two days last week reminded me of those days and brought up my fear about a repeat of the days before my hospitalization and then my surgery.
I worry about the future. I worry about teaching next fall, about staying well long enough to continue with my life, to see Lucy move into junior high school, and then high school, to see Nathaniel compete in gymnastics for many more years, to grow out the two front teeth he's lost, and develop into a young man.
I worry about getting a bad CT scan and then needing chemo. Then, I worry about the effects of the chemo, and I try not to worry, because I don't want to anticipate how my body will react. I worry about worrying, and then I try not to worry. Some days since my last clean scan, I have thought only occasionally about cancer, about having cancer, and some days I can't seem to think about anything else.
After I wrote the first part of this, I had a conversation with Patty about this Sunday's sermon. (Patty is a minister, so most weeks, she has a sermon to write for Sunday service.) Our conversation reminded me of the Serenity Prayer, one so central to Alcoholics Anonymous, and one which speaks to so many of us. I think it's what I need to remember when I worry.
God,
Grant me the Serenity to accept the things I cannot change;
The Courage to change the things I can; and
The Wisdom to know the difference.
I can't change what's happened in my body, but I can change how I feel about it. And when I worry, I can recognize that what I worry about is out of my control, and release it. I also want to remind myself that my goal since my diagnosis has been to live in the moment. When I worry, I project into the future and let go of the present moment. Serenity. Leting go of worry about the future. Being in the moment.
Tuesday, October 03, 2006
"Body Worlds" Exhibit viewed by a Person with Cancer
Today I went to see the Body Worlds exhibit (An Anatomical Exhibition of Real Bodies, using a preservation technique called plastination) at the Boston Museum of Science. I took a class of freshmen in a seminar focusing on self and identity, and so I went as a teacher, professor, and also as a learner. When I arrived, I found myself viewing the amazing bodies of the exhibit through the lens of a person with cancer.
Before I say more about that, I want to also say that I felt privileged to see what's inside our bodies in an amazing, graphic, way. I felt initiated into the inside of the human body in a way that has traditionally been available only to medical students, doctors, nurses, and others in the medical profession.
Having said that, I was aware from first stepping into the exhibit that I was looking for information about my own body, not just participating in an abstract exercise. Looking at bones first, I checked out the fibula, to see a representation of my ankle broken last winter, looking for an ankle which carries a metal plate and six screws that poke a little out of the bone, just like mine. They showed metal joint replacements, but no metal plates stabilizing broken bone. In one part of the exhibit, there was a body with nerves exposed, from head to toe, including nerves across the foot that must be the ones that sometimes tingle next to and down from those stabilizing screws.
The internal organs come a little later. I saw lungs and liver, stomach and kidneys, and finally a gallbladder, even one with gallstones. I saw livers with cancer metastisized in multiple spots across the organ, and I saw cross sections of cancerous lungs with tumors, some small, some large. I saw brain tumors and breast tumors. I didn't see a cancerous gallbladder, or a cancerous bile duct, but of course these are both rare cancers. I wanted to see the relationship of all of these internal organs to each other, to see where they fit together, how the gallbladder is tucked up under the liver, how big the liver is in relation to many of the other organs in the area.
There were a lot of smokers' lungs, some with cancerous tumors. Last week in his blog, Leroy talked about not wanting to "police" the behavior of other people, not wanting to be their moral guardian. He doesn't choose to criticize someone who smokes for example (although he does think they should quit!). I have to admit that I was pleased to see many samples of smokers' lungs, for my college students and others who smoke. If none of my students smoke, they would be an unusual class, as in the last few years I have found at least a handful of smokers among the young adults in every class. The lungs of smokers were dark and discolored, and looked very unhealthy and very different from the healthy lungs.
Going to the exhibit, I expected to be informed and educated. I didn't expect to be engulfed by feelings and thoughts and worry about my cancer, my body, my still cancerous bile duct. I wouldn't have missed the exhibit, but I would have enjoyed it more a year ago when I wasn't looking for signs of cancer, signs of internal organs not doing their job because of cancer.
Before I say more about that, I want to also say that I felt privileged to see what's inside our bodies in an amazing, graphic, way. I felt initiated into the inside of the human body in a way that has traditionally been available only to medical students, doctors, nurses, and others in the medical profession.
Having said that, I was aware from first stepping into the exhibit that I was looking for information about my own body, not just participating in an abstract exercise. Looking at bones first, I checked out the fibula, to see a representation of my ankle broken last winter, looking for an ankle which carries a metal plate and six screws that poke a little out of the bone, just like mine. They showed metal joint replacements, but no metal plates stabilizing broken bone. In one part of the exhibit, there was a body with nerves exposed, from head to toe, including nerves across the foot that must be the ones that sometimes tingle next to and down from those stabilizing screws.
The internal organs come a little later. I saw lungs and liver, stomach and kidneys, and finally a gallbladder, even one with gallstones. I saw livers with cancer metastisized in multiple spots across the organ, and I saw cross sections of cancerous lungs with tumors, some small, some large. I saw brain tumors and breast tumors. I didn't see a cancerous gallbladder, or a cancerous bile duct, but of course these are both rare cancers. I wanted to see the relationship of all of these internal organs to each other, to see where they fit together, how the gallbladder is tucked up under the liver, how big the liver is in relation to many of the other organs in the area.
There were a lot of smokers' lungs, some with cancerous tumors. Last week in his blog, Leroy talked about not wanting to "police" the behavior of other people, not wanting to be their moral guardian. He doesn't choose to criticize someone who smokes for example (although he does think they should quit!). I have to admit that I was pleased to see many samples of smokers' lungs, for my college students and others who smoke. If none of my students smoke, they would be an unusual class, as in the last few years I have found at least a handful of smokers among the young adults in every class. The lungs of smokers were dark and discolored, and looked very unhealthy and very different from the healthy lungs.
Going to the exhibit, I expected to be informed and educated. I didn't expect to be engulfed by feelings and thoughts and worry about my cancer, my body, my still cancerous bile duct. I wouldn't have missed the exhibit, but I would have enjoyed it more a year ago when I wasn't looking for signs of cancer, signs of internal organs not doing their job because of cancer.
Monday, September 25, 2006
All in the Same Boat
I mentioned in my last post that cancer affects far more than the person diagnosed. Over the past four months (yesterday was the four month "anniversary" of my diagnosis), I have witnessed and heard about the impact on friends and family. I could see from the faces of friends who came to the hospital how worried they were about me, and I have felt supported and well loved by the reaching out in cards, letters, emails and phone calls of so many in my various communities of friends. Those who have been diagnosed with cancer, or had a close friend, family member or partner experience a cancer diagnosis and treatment have responded with a special empathy. Many of their responses are found in the "comment" section of this blog.
Sometimes, those who are friends but not otherwise or previously touched by a cancer diagnosis personally respond powerfully to the urgency of my diagnosis. One of those is a co-worker, colleague and friend, Julie Baker, who wrote movingly of her response to my diagnosis.
About our common mortality, Julie wrote: "When I think about life and death, I always think about how in reality, there's no secure or definite future for anyone. Any of us could drop dead at any moment for any reason, or for no reason at all. There are no promises or guarantees that we are going to wake up tomorrow, or next week or next year." Like me, Julie is a mother of a small child, her daughter. She shared with me how being a parent had brought her a powerful sense of her mortality. " . . . my greatest fear is that I will not be here for my daughter - selfishly, because I want to be here for every moment of her life, and unselfishly, because I always want her to have the enormous, unconditional love that I believe only I can give her."
About living in the present, Julie writes that "I have decided that even though intellectually, we all know that nothing is certain or guaranteed from one moment to the next, we suppress that thought because we have to in order to go about our day-to-day lives. Most of us would be immobilized - or think we would be - if we confronted the reality of the situation. But maybe that's exactly wrong. Maybe we should all acknowledge it, and not wait for an illness or an accident or a diagnosis to remind us. Because it's true for all of us, whether we've been brought to the consciousness of it (as you have) or not."
"Why am I telling you this? " Julie writes. "Because your blog got me thinking, for one thing. But also, because maybe I hope it will make you feel a little less separate or different. You're not. We really are all in the same boat. In one sense, bizarre as it sounds, you are ahead of the game - you have confronted the reality squarely (like it or not), and you can use that information to make better choices about how you live all the moments of your life. I try to do that, but I constantly fall victim to the crisis du jour, and suddenly it's a week later, or a month later, or a year later. I don't want to look back at some point and have to ask myself why I have wasted all this time. You know?"
Julie's thoughts reflect to me some of what I might have thought a year ago, before cancer. And I appreciate the empathy, the reaching out, the connecting her different experience with mine.
Also, with last week's good news and another two months of breathing space, I find myself losing some of my "edge" about my mortality. Maybe I'll beat this. Maybe I'll live not just one year or two, but twenty. Maybe my cancer took twenty years to get to the place that required surgery last May, and maybe additional surgery really can remove the rest. Since I've already confounded my doctor with my response in the last four months, why not go for more? But can I hope for more and still hold the lessons learned from these past months?
For many years, I attended annual workshops with W. Brugh Joy, whose perspective about life events is often radically different from the norm. He often said "The deep psyche loves contrast." My psyche has been blown away from the events of past months, contrasting powerfully with what preceded this time. Can I keep living in the moment and savoring each bit? Can I truly remember that we really all are in the same boat, living a life that could end at any moment, without notice? When we were traveling to the southwest this past June, to national parks full of ancient rocks (Zion National Park, Bryce, Capitol Reef, Grand Canyon, and others), I felt that I was in geologic time. A rock could fall and take my life at any time. I could live with that then. Now I just want to live.
Sometimes, those who are friends but not otherwise or previously touched by a cancer diagnosis personally respond powerfully to the urgency of my diagnosis. One of those is a co-worker, colleague and friend, Julie Baker, who wrote movingly of her response to my diagnosis.
About our common mortality, Julie wrote: "When I think about life and death, I always think about how in reality, there's no secure or definite future for anyone. Any of us could drop dead at any moment for any reason, or for no reason at all. There are no promises or guarantees that we are going to wake up tomorrow, or next week or next year." Like me, Julie is a mother of a small child, her daughter. She shared with me how being a parent had brought her a powerful sense of her mortality. " . . . my greatest fear is that I will not be here for my daughter - selfishly, because I want to be here for every moment of her life, and unselfishly, because I always want her to have the enormous, unconditional love that I believe only I can give her."
About living in the present, Julie writes that "I have decided that even though intellectually, we all know that nothing is certain or guaranteed from one moment to the next, we suppress that thought because we have to in order to go about our day-to-day lives. Most of us would be immobilized - or think we would be - if we confronted the reality of the situation. But maybe that's exactly wrong. Maybe we should all acknowledge it, and not wait for an illness or an accident or a diagnosis to remind us. Because it's true for all of us, whether we've been brought to the consciousness of it (as you have) or not."
"Why am I telling you this? " Julie writes. "Because your blog got me thinking, for one thing. But also, because maybe I hope it will make you feel a little less separate or different. You're not. We really are all in the same boat. In one sense, bizarre as it sounds, you are ahead of the game - you have confronted the reality squarely (like it or not), and you can use that information to make better choices about how you live all the moments of your life. I try to do that, but I constantly fall victim to the crisis du jour, and suddenly it's a week later, or a month later, or a year later. I don't want to look back at some point and have to ask myself why I have wasted all this time. You know?"
Julie's thoughts reflect to me some of what I might have thought a year ago, before cancer. And I appreciate the empathy, the reaching out, the connecting her different experience with mine.
Also, with last week's good news and another two months of breathing space, I find myself losing some of my "edge" about my mortality. Maybe I'll beat this. Maybe I'll live not just one year or two, but twenty. Maybe my cancer took twenty years to get to the place that required surgery last May, and maybe additional surgery really can remove the rest. Since I've already confounded my doctor with my response in the last four months, why not go for more? But can I hope for more and still hold the lessons learned from these past months?
For many years, I attended annual workshops with W. Brugh Joy, whose perspective about life events is often radically different from the norm. He often said "The deep psyche loves contrast." My psyche has been blown away from the events of past months, contrasting powerfully with what preceded this time. Can I keep living in the moment and savoring each bit? Can I truly remember that we really all are in the same boat, living a life that could end at any moment, without notice? When we were traveling to the southwest this past June, to national parks full of ancient rocks (Zion National Park, Bryce, Capitol Reef, Grand Canyon, and others), I felt that I was in geologic time. A rock could fall and take my life at any time. I could live with that then. Now I just want to live.
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.
Tuesday, September 12, 2006
"Today is a good day to die"
Please don't panic! I'm not losing my will to live, or contemplating the end, I just had another epiphany today in what may feel like my ongoing litany of living in the moment.
For those of you who have responded to my blog, by posting a response online, or by emailing me, I value the way you are reflecting back to me what speaks to you in what I have to say. Whether or not you are struggling with or have struggled with a cancer diagnosis, or whether you are or have been a caregiver to someone with cancer, whether you are someone who has stumbled on my blog and found it has something to say to you, or whether you are a friend who loves me, I thank you for being part of this online conversation.
Today was a stunningly beautiful late summer day in Boston. The sky a perfect blue, with wispy white clouds providing contrast. The air was warm in the sun, cool in the shade, comfortable with short sleeves, and invigorating to walk in. And walking I was, around 2:00, from Beacon Hill to Back Bay in Boston, to a dental appointment. (Since I like my dentist and was just going to have a fallen-out filling replaced, I had no dread about the appointment, just a sense of purpose.) And, I am moved to say, it was just such a perfect weather and sky day on September 11, 2001 in Boston, spurring memories of that day. Still, moving my body, seeing the interplay of light and shadow on the ground from trees and leaves, I felt transported to a state of pure joy. It was a moment, a moment that reminded me of this line: "Today is a good day to die."
The first time I heard someone say it and mean it was during a two week canoe trip with 15 other adults on the north-flowing Harricanaw River in Canada, about fifteen years ago. We were more than halfway through our wilderness adventure of canoeing to James Bay, and one morning we awoke to a sandy river beach, a gorgeous blue sky, and a perfect temperature. One of my fellow travelers, Terri, said, "Today is a good day to die." I didn't initially know how to take his comment, but then I got it. We were challenging our bodies, experiencing terrain new to us, living in the moment. We were in the right place, at the right time, and our trip was beginning to flow like the river. If our lives had ended that day, we could have died happy, knowing we were living in the moment and doing something we loved.
As I thought about sharing my insight from this afternoon, I worried that some of you, my friends, might panic. I briefly considered the title of "This moment is a good moment to live, not die," because it was a feeling of the moment, but the title definitely lacks punch. When I left the dentist about 90 minutes after my "moment," the air was cooler, the sun not so bright, and though I hoped that the feeling of perfection would return, it didn't. Because I think that it's not really about "perfect days" [for dying, or for living], but rather about "perfect moments" for living, and for realizing that, in those moments, we can be transported beyond our ordinary selves. In that moment this aftenoon, I felt the rightness of the day and my place in it. For that moment, nothing else mattered. Even cancer.
For those of you who have responded to my blog, by posting a response online, or by emailing me, I value the way you are reflecting back to me what speaks to you in what I have to say. Whether or not you are struggling with or have struggled with a cancer diagnosis, or whether you are or have been a caregiver to someone with cancer, whether you are someone who has stumbled on my blog and found it has something to say to you, or whether you are a friend who loves me, I thank you for being part of this online conversation.
Today was a stunningly beautiful late summer day in Boston. The sky a perfect blue, with wispy white clouds providing contrast. The air was warm in the sun, cool in the shade, comfortable with short sleeves, and invigorating to walk in. And walking I was, around 2:00, from Beacon Hill to Back Bay in Boston, to a dental appointment. (Since I like my dentist and was just going to have a fallen-out filling replaced, I had no dread about the appointment, just a sense of purpose.) And, I am moved to say, it was just such a perfect weather and sky day on September 11, 2001 in Boston, spurring memories of that day. Still, moving my body, seeing the interplay of light and shadow on the ground from trees and leaves, I felt transported to a state of pure joy. It was a moment, a moment that reminded me of this line: "Today is a good day to die."
The first time I heard someone say it and mean it was during a two week canoe trip with 15 other adults on the north-flowing Harricanaw River in Canada, about fifteen years ago. We were more than halfway through our wilderness adventure of canoeing to James Bay, and one morning we awoke to a sandy river beach, a gorgeous blue sky, and a perfect temperature. One of my fellow travelers, Terri, said, "Today is a good day to die." I didn't initially know how to take his comment, but then I got it. We were challenging our bodies, experiencing terrain new to us, living in the moment. We were in the right place, at the right time, and our trip was beginning to flow like the river. If our lives had ended that day, we could have died happy, knowing we were living in the moment and doing something we loved.
As I thought about sharing my insight from this afternoon, I worried that some of you, my friends, might panic. I briefly considered the title of "This moment is a good moment to live, not die," because it was a feeling of the moment, but the title definitely lacks punch. When I left the dentist about 90 minutes after my "moment," the air was cooler, the sun not so bright, and though I hoped that the feeling of perfection would return, it didn't. Because I think that it's not really about "perfect days" [for dying, or for living], but rather about "perfect moments" for living, and for realizing that, in those moments, we can be transported beyond our ordinary selves. In that moment this aftenoon, I felt the rightness of the day and my place in it. For that moment, nothing else mattered. Even cancer.
Friday, September 08, 2006
Bittersweet
Last month, I was sitting on a Cape Cod beach with my family and friends when my friend Maria asked me if it was hard, being there, having fun in the moment, but knowing about my diagnosis and the future. I thought about the question for a moment, teared up, and responded that it was bittersweet. My life is filled with bittersweet moments these days.
This past week I attended convocation, where the University formally welcomes new freshmen to campus and to their role in the University community. "Welcome to the Class of 2010," the University president said. And I thought, as I never had before, "Will I be here in 2010 to see these incoming students graduate?" Added to that thought was an even more personal question about 2010: Would I be here to see my daughter enter high school? Would I be here in 2014 when she would graduate from high school? Painful, bittersweet thoughts.
Yesterday I stood before a new class of students, discussing the course, welcoming them to a new field of study, and suddenly it hit me. The wall of sadness that came to me was powerful, and I had to shift from it in order to stay present to the class. The last time I stood before a class, I didn't know that cancer was growing inside me. I envisioned myself teaching well into the next decade of my life, my 60s, and teaching into the next decade of this century. Perhaps I will indeed defy the odds and medical predictions and be here then, but I no longer assume that will be the case. And, the sweetness of all of this is that I am teaching, I am standing before new groups of students, sharing what I know, supporting them in their learning, and in being active participants in the changes, academic and personal, that ideally are part of their college years.
As I have pondered these thoughts and feelings, I have noted that the sweetness is in the present moment, and the bitterness is in looking toward the future and noting its uncertainty. And, the truth is that while we humans like to look to the future and make plans, and anticipate with delight good things we want to have come our way, the future is not within our control. So, once again I return to now, to the present, to the moments over which I have some control, over how I feel, and how I greet each moment.
This past week I attended convocation, where the University formally welcomes new freshmen to campus and to their role in the University community. "Welcome to the Class of 2010," the University president said. And I thought, as I never had before, "Will I be here in 2010 to see these incoming students graduate?" Added to that thought was an even more personal question about 2010: Would I be here to see my daughter enter high school? Would I be here in 2014 when she would graduate from high school? Painful, bittersweet thoughts.
Yesterday I stood before a new class of students, discussing the course, welcoming them to a new field of study, and suddenly it hit me. The wall of sadness that came to me was powerful, and I had to shift from it in order to stay present to the class. The last time I stood before a class, I didn't know that cancer was growing inside me. I envisioned myself teaching well into the next decade of my life, my 60s, and teaching into the next decade of this century. Perhaps I will indeed defy the odds and medical predictions and be here then, but I no longer assume that will be the case. And, the sweetness of all of this is that I am teaching, I am standing before new groups of students, sharing what I know, supporting them in their learning, and in being active participants in the changes, academic and personal, that ideally are part of their college years.
As I have pondered these thoughts and feelings, I have noted that the sweetness is in the present moment, and the bitterness is in looking toward the future and noting its uncertainty. And, the truth is that while we humans like to look to the future and make plans, and anticipate with delight good things we want to have come our way, the future is not within our control. So, once again I return to now, to the present, to the moments over which I have some control, over how I feel, and how I greet each moment.
Thursday, September 07, 2006
Having Cancer: A Full-time Job
Having a cancer diagnosis is a full-time job, I've decided. I shared that observation with a nurse friend a few weeks ago, and she said that she tells her advanced nursing students exactly that about having a chronic illness. And here I thought I'd had a new insight!
Given that I'm not yet having any regular treatment for the gallbladder cancer, you might ask what takes so much time about having cancer. First, it occupies all of those empty spaces in my mind that I would just as soon remain vacant and quiet. Many nights, I try to sleep, and I start thinking about cancer; I wake up during the night, and I think about cancer; walking, sitting, waiting, any time my mind is not actively engaged, it turns to thoughts of cancer. When I have moments or even stretches of time when I forget that I have cancer, I am delighted.
Aside from thinking about it, I gather information everywhere I can. On my side table, I have a pile of books from the library about cancer and healing: Bill Moyers - Healing and the Mind, What to Eat if you have Cancer, Cancer Clinical Trials. and One Renegade Cell. I have only browsed the books, but there they sit, perhaps holding some valuable gem of information. My friend Alice gave me Return to Wholeness by Dr. David Simon, medical director for the Chopra Center for Well Being, using Ayurvedic techniques, diet, nutrition, herbs and perspectives to assist in traditional cancer treatment. He has wonderfully practical suggestions like how to stimulate an appetite depressed by chemotherapy, and how to work cooperatively with medical personnel and the healing potential in our own bodies to maximize healing and success for treatment. While I have learned much from the first half of the book, the most memorable part for me, so far, is his description of a study that was done by Dr. Robert Ader on how our minds can affect our immune system.
In the study, rats were given sweetened water and then injected with a chemical that would induce nausea and vomiting, and temporarily suppress their immune systems. After the rats had recovered, they were again given sweet water and an injection, this time with saline. Because of their conditioning, they were nauseated from the sweet water and saline injection, but they also showed suppression of their immune system even though no drug was given to cause that affect. Simon comments that "Their immune cells had 'learned' that sweetened water caused them to be suppressed." I haven't started chemo, but it seems that there is a powerful cautionary tale here for the future.
In addition to reading books, I check out the discussion boards to see what's up, read about the chemo drugs on the chemocare.com site, check out the latest research in PubMed, and read the 17-page protocol for the clinical trial proposed to me once again. (This link will take you to the National Institutes of Health site for the particular clinical trial I'm considering. The home site of clinicaltrials.gov can introduce you to other clinical trials around the country.) The "PubMed" site is a government website providing abstracts of medical research around the world. I created an "account" at no charge, receive email notices when a new batch of article abstracts on gallbladder cancer is listed, and can see what's being currently published. Knowing very little about medicine, some of the abstracts are full of medical terminology I don't understand, but the more I read, the more the abstracts begin to make some sense. Some of the recent research is quite encouraging, as new drug combinations, or drugs administered differently have a notable impact on survival of patients with gallbladder cancer.
However, a cautionary note for me. I went to the Bloch Cancer website, full of practical and encouraging information, but when I checked the list of patients who were five years or more post diagnosis, and had a rare cancer, there were none listed with gallbladder or even bile duct cancer.
So, lots to read, lots to think about, lots to learn. A full-time job indeed.
Given that I'm not yet having any regular treatment for the gallbladder cancer, you might ask what takes so much time about having cancer. First, it occupies all of those empty spaces in my mind that I would just as soon remain vacant and quiet. Many nights, I try to sleep, and I start thinking about cancer; I wake up during the night, and I think about cancer; walking, sitting, waiting, any time my mind is not actively engaged, it turns to thoughts of cancer. When I have moments or even stretches of time when I forget that I have cancer, I am delighted.
Aside from thinking about it, I gather information everywhere I can. On my side table, I have a pile of books from the library about cancer and healing: Bill Moyers - Healing and the Mind, What to Eat if you have Cancer, Cancer Clinical Trials. and One Renegade Cell. I have only browsed the books, but there they sit, perhaps holding some valuable gem of information. My friend Alice gave me Return to Wholeness by Dr. David Simon, medical director for the Chopra Center for Well Being, using Ayurvedic techniques, diet, nutrition, herbs and perspectives to assist in traditional cancer treatment. He has wonderfully practical suggestions like how to stimulate an appetite depressed by chemotherapy, and how to work cooperatively with medical personnel and the healing potential in our own bodies to maximize healing and success for treatment. While I have learned much from the first half of the book, the most memorable part for me, so far, is his description of a study that was done by Dr. Robert Ader on how our minds can affect our immune system.
In the study, rats were given sweetened water and then injected with a chemical that would induce nausea and vomiting, and temporarily suppress their immune systems. After the rats had recovered, they were again given sweet water and an injection, this time with saline. Because of their conditioning, they were nauseated from the sweet water and saline injection, but they also showed suppression of their immune system even though no drug was given to cause that affect. Simon comments that "Their immune cells had 'learned' that sweetened water caused them to be suppressed." I haven't started chemo, but it seems that there is a powerful cautionary tale here for the future.
In addition to reading books, I check out the discussion boards to see what's up, read about the chemo drugs on the chemocare.com site, check out the latest research in PubMed, and read the 17-page protocol for the clinical trial proposed to me once again. (This link will take you to the National Institutes of Health site for the particular clinical trial I'm considering. The home site of clinicaltrials.gov can introduce you to other clinical trials around the country.) The "PubMed" site is a government website providing abstracts of medical research around the world. I created an "account" at no charge, receive email notices when a new batch of article abstracts on gallbladder cancer is listed, and can see what's being currently published. Knowing very little about medicine, some of the abstracts are full of medical terminology I don't understand, but the more I read, the more the abstracts begin to make some sense. Some of the recent research is quite encouraging, as new drug combinations, or drugs administered differently have a notable impact on survival of patients with gallbladder cancer.
However, a cautionary note for me. I went to the Bloch Cancer website, full of practical and encouraging information, but when I checked the list of patients who were five years or more post diagnosis, and had a rare cancer, there were none listed with gallbladder or even bile duct cancer.
So, lots to read, lots to think about, lots to learn. A full-time job indeed.
Saturday, September 02, 2006
Resting, Truly Resting
On this Labor Day weekend, I'm thinking about resting and not laboring. It's become a cliche in our culture to talk about how busy we all are, and like many cliches, it's largely true. Many of us find ourselves going nonstop from morning until night, and then collapsing in front of the television, which can shift our focus, but isn't truly restful. One thing I have read in many essays, blogs, and books, is how often a diagnosis of cancer causes us to re-examine our lives, and how we spend our time. I have joined those numbers over the past three months as I recovered from surgery, took family vacations, and contemplated how I choose to live my life, including time to rest.
In his blog, Leroy Sievers doesn't talk much about the spiritual aspects of dealing with cancer, but in his August 9 post, he did ask his readers for "new tricks." He was seeking new ideas for getting through the day, making life with cancer more manageable. He received over 100 responses to that post, and I think it's because his question so resonates for those of us with cancer. And, even without cancer, we can all ask how we want to make our lives work better.
True rest, I think, can be a spiritual discipline, and many spiritual discplines can help us truly rest. Many of us churchgoers know that the words "sabbath" and "sabbatical" derive from a Hebrew word for rest. The sabbath is intended to be a time for rest and reflection, but I think none of us need to wait for one special day of the week to rest and rejuvenate. So, as I have been contemplating how to change my life, to slow it down, to find more rest and rejuvenation in my daily life, I have been contemplating spiritual practices and how my living and working space can support stepping out from the busy-ness of daily life.
Meditation and Centering Prayer. For many years, I meditated regularly, but after the birth of my (now 10-year old) daughter, I found it hard to maintain, and stopped meditating. Two years ago, I returned to a regular meditation practice, initially just one day a week, and, when I was joined by a friend in that weekly meditation, it became a grounding highlight of my week. Over the past few months, I have chosen to return to regular meditation. For me, meditation is a time to sit in silence and to listen for the voice of God. Some days my mind is very busy and I need to bring my attention back again and again to my mantra (a simple sying that grounds me in God's presence), and some days I feel truly lifted out of my busy mind and into a spacious and holy place, if only for a few moments. I believe that the spiritual discipline of meditation is a powerful tool for deep rest.
Sacred Space. I have always tried to maintain some space in my house for sacred objects and photographs of loved ones who have died. I have added a new sacred space this summer in a corner of my bedroom, a small table covered with the first silk scarf I painted containing images of water and sky, and then laid with a candle, a smudge stick (for cleansing the air), a few crystals (because they are beautiful and can absorb energy around them, I believe), and a few special books. I also lay on the table a strand of beautiful prayer beads and a pocket angel with the word "Harmony" on the back, given to me by my meditation friend. Just looking at the table grounds me, and sitting next to it in meditation creates a corner of grounded, quiet, sacred energy.
And, when I meditate I can wrap myself in a colorful hand knit prayer shawl, made for me and prayed over by loving friends.
Sacred, Spiritual Reading. Whether it's the Bible or something written more recently by a spiritual teacher, reading about the inner world, the world of spirit, offers me the potential for grounded, healing thoughts. I am going to be writing more later about some of the books that have moved me, but for now, I want to mention a pamphlet sent to me by a professional colleague and friend who is a cancer survivor (Thanks, Elizabeth!) entitled "How to Survive and Thrive in the face of a life-threatening illness." A healing group from her church put together a lovely booklet with personal stories and reminders about things that can be healing; prayer, dreams, loving companionship, spiritual reading, living in the moment, art, and holding hope. This book just arrived in the mail yesterday, but already it has spoken to me powerfully of the commonality of our struggles with cancer, and the power of spirit to mend us, spiritually and, sometimes, physically.
Reiki Energy. Five years ago, I was trained to be a Reiki healer, which essentially means trained to channel this energy. I'm not going to try to explain the process here, but I do want to say that I feel the energy fill my body when I open to it, and that I do believe Reiki opened a channel to universal healing that is available to all. (That may sound a little strange to you if you have had no experience with Reiki, but I am speaking for myself and what I know.) I am grateful to the friends who have asked me if they can channel Reiki energy to me from a distance, and I would not hesitate to seek a Reiki healer for hands-on work if I felt in need.
As I come to the end of this post, and look at where I began, I wonder if this all reads like a lot of work, and not rest at all. Setting up the routines and making the time for it may feel like work, but once I am in the rhythm of attending to my need to rest and rejuvenate, then each of these offers solace, peace, rest and comfort. Taking care of myself doesn't have to be work, but it does require intention and attention.
In his blog, Leroy Sievers doesn't talk much about the spiritual aspects of dealing with cancer, but in his August 9 post, he did ask his readers for "new tricks." He was seeking new ideas for getting through the day, making life with cancer more manageable. He received over 100 responses to that post, and I think it's because his question so resonates for those of us with cancer. And, even without cancer, we can all ask how we want to make our lives work better.
True rest, I think, can be a spiritual discipline, and many spiritual discplines can help us truly rest. Many of us churchgoers know that the words "sabbath" and "sabbatical" derive from a Hebrew word for rest. The sabbath is intended to be a time for rest and reflection, but I think none of us need to wait for one special day of the week to rest and rejuvenate. So, as I have been contemplating how to change my life, to slow it down, to find more rest and rejuvenation in my daily life, I have been contemplating spiritual practices and how my living and working space can support stepping out from the busy-ness of daily life.
Meditation and Centering Prayer. For many years, I meditated regularly, but after the birth of my (now 10-year old) daughter, I found it hard to maintain, and stopped meditating. Two years ago, I returned to a regular meditation practice, initially just one day a week, and, when I was joined by a friend in that weekly meditation, it became a grounding highlight of my week. Over the past few months, I have chosen to return to regular meditation. For me, meditation is a time to sit in silence and to listen for the voice of God. Some days my mind is very busy and I need to bring my attention back again and again to my mantra (a simple sying that grounds me in God's presence), and some days I feel truly lifted out of my busy mind and into a spacious and holy place, if only for a few moments. I believe that the spiritual discipline of meditation is a powerful tool for deep rest.
Sacred Space. I have always tried to maintain some space in my house for sacred objects and photographs of loved ones who have died. I have added a new sacred space this summer in a corner of my bedroom, a small table covered with the first silk scarf I painted containing images of water and sky, and then laid with a candle, a smudge stick (for cleansing the air), a few crystals (because they are beautiful and can absorb energy around them, I believe), and a few special books. I also lay on the table a strand of beautiful prayer beads and a pocket angel with the word "Harmony" on the back, given to me by my meditation friend. Just looking at the table grounds me, and sitting next to it in meditation creates a corner of grounded, quiet, sacred energy.
And, when I meditate I can wrap myself in a colorful hand knit prayer shawl, made for me and prayed over by loving friends.
Sacred, Spiritual Reading. Whether it's the Bible or something written more recently by a spiritual teacher, reading about the inner world, the world of spirit, offers me the potential for grounded, healing thoughts. I am going to be writing more later about some of the books that have moved me, but for now, I want to mention a pamphlet sent to me by a professional colleague and friend who is a cancer survivor (Thanks, Elizabeth!) entitled "How to Survive and Thrive in the face of a life-threatening illness." A healing group from her church put together a lovely booklet with personal stories and reminders about things that can be healing; prayer, dreams, loving companionship, spiritual reading, living in the moment, art, and holding hope. This book just arrived in the mail yesterday, but already it has spoken to me powerfully of the commonality of our struggles with cancer, and the power of spirit to mend us, spiritually and, sometimes, physically.
Reiki Energy. Five years ago, I was trained to be a Reiki healer, which essentially means trained to channel this energy. I'm not going to try to explain the process here, but I do want to say that I feel the energy fill my body when I open to it, and that I do believe Reiki opened a channel to universal healing that is available to all. (That may sound a little strange to you if you have had no experience with Reiki, but I am speaking for myself and what I know.) I am grateful to the friends who have asked me if they can channel Reiki energy to me from a distance, and I would not hesitate to seek a Reiki healer for hands-on work if I felt in need.
As I come to the end of this post, and look at where I began, I wonder if this all reads like a lot of work, and not rest at all. Setting up the routines and making the time for it may feel like work, but once I am in the rhythm of attending to my need to rest and rejuvenate, then each of these offers solace, peace, rest and comfort. Taking care of myself doesn't have to be work, but it does require intention and attention.
Thursday, August 31, 2006
First Encounters
For anyone reading this post, here's a warning: I'm not feeling cheerful tonight, and I am feeling that Cancer Sucks! (A good friend actually gave me a little bear with those words, and it sits by my favorite TV watching chair. Good to have when I'm in this kind of mood.) Now that I have that off my chest . . . I had thought my next blog would focus on the spiritual aspects of my diagnosis, but I'm not feeling "spiritual" tonight.
When I do just about anything for the first time after my cancer diagnosis, it can be stressful. This week I went back to work. I have been on break for the summer, and I had meetings this week, and next week I resume teaching. So, for the first time since my diagnosis, I returned to my office. It's actually full of boxes, because I'm moving to a new office over the weekend, and my graduate assistant packed my office, but I got to sit there and say good-bye. And I got to remember that when I was last there, I had funny itching and orange urine, so I left and went to see my doctor. From there, it was a quick trip to the ultrasound, then the ERCP, then 10 days of hospitalization, major surgery, and my diagnosis. More than three months ago, and it feels like an eternity. Today I walked familiar streets in Boston, and remembered that the last time I walked them, I didn't have cancer. Or rather, the cancer was in me, and I didn't know it. I wish I could return to that pre-cancer innocence.
As summer ends, I am seeing friends and work colleagues I haven't seen since spring, and I wonder whether or not they know about my diagnosis. Some folks know I was "sick," but don't know the details. "How much do I feel like sharing in the moment?" I have to ask myself. The news was so bleak in May that I wasn't sure I would still be alive to see Sept. 1, so I told a lot of folks about the diagnosis then. Now, some days, I feel that overwhelming one more person with the poor prognosis for this disease is more than I can stand. I can feel their energy sink as I talk, and then my energy sinks, and it feels as if there is nothing else to say. And it is exhausting.
Next week, I'll teach my first classes, talk with returning students, meet new students, see more folks I haven't seen since spring, and unpack the boxes of my office stuff in my new office space. And again, it will be exhausting, but then this particular set of "first encounters (since the cancer diagnosis)" will be over, and life can go on. And I'm grateful that, for the moment, life is going on.
And, if you are reading this and you are one of the friends or colleagues I saw yesterday, or today, or that I see next week, don't worry about talking to me, or asking me how I feel. It's my job to figure out how I want to respond to questions, and I always appreciate the concern and caring behind those questions. So, do ask, and know that Cancer Sucks!
When I do just about anything for the first time after my cancer diagnosis, it can be stressful. This week I went back to work. I have been on break for the summer, and I had meetings this week, and next week I resume teaching. So, for the first time since my diagnosis, I returned to my office. It's actually full of boxes, because I'm moving to a new office over the weekend, and my graduate assistant packed my office, but I got to sit there and say good-bye. And I got to remember that when I was last there, I had funny itching and orange urine, so I left and went to see my doctor. From there, it was a quick trip to the ultrasound, then the ERCP, then 10 days of hospitalization, major surgery, and my diagnosis. More than three months ago, and it feels like an eternity. Today I walked familiar streets in Boston, and remembered that the last time I walked them, I didn't have cancer. Or rather, the cancer was in me, and I didn't know it. I wish I could return to that pre-cancer innocence.
As summer ends, I am seeing friends and work colleagues I haven't seen since spring, and I wonder whether or not they know about my diagnosis. Some folks know I was "sick," but don't know the details. "How much do I feel like sharing in the moment?" I have to ask myself. The news was so bleak in May that I wasn't sure I would still be alive to see Sept. 1, so I told a lot of folks about the diagnosis then. Now, some days, I feel that overwhelming one more person with the poor prognosis for this disease is more than I can stand. I can feel their energy sink as I talk, and then my energy sinks, and it feels as if there is nothing else to say. And it is exhausting.
Next week, I'll teach my first classes, talk with returning students, meet new students, see more folks I haven't seen since spring, and unpack the boxes of my office stuff in my new office space. And again, it will be exhausting, but then this particular set of "first encounters (since the cancer diagnosis)" will be over, and life can go on. And I'm grateful that, for the moment, life is going on.
And, if you are reading this and you are one of the friends or colleagues I saw yesterday, or today, or that I see next week, don't worry about talking to me, or asking me how I feel. It's my job to figure out how I want to respond to questions, and I always appreciate the concern and caring behind those questions. So, do ask, and know that Cancer Sucks!
Sunday, August 27, 2006
What Does it Mean When your Most Pampered Organ Develops Cancer?
So, here's the weird thing about my gallbladder cancer. Of all the organs in my body, except perhaps my skin, it's the one I've spent the last twenty years taking extra specially good care of. Before I describe my pampering, I wans to answer a question some of you may be asking (as one friend did after hearing of my diagnosis): Where is the gall bladder and what does it do? The National Institutes of Health website defines it this way: "The gallbladder is a pear-shaped organ that lies just under the liver in the upper abdomen. The gallbladder stores bile, a fluid made by the liver to digest fat. When food is being broken down in the stomach and intestines, bile is released from the gallbladder through a tube called the common bile duct, which connects the gallbladder and live to the first part of the small intestine." That's the medical explanation. How did I come to pamper my gall bladder?
Growing up, I heard about the gallbladder from an early age, because my mother had hers surgically removed when I was just a toddler. There were foods she didn't cook for us, mostly pork and other fatty foods, because her doctors had told her to avoid pork after her surgery. So, I had heard about gallbladders early on, even if I didn't understand what they did. In my thirties, I had my first "gallbladder attack" (my words, I didn't see a doctor then) when I was awakened in the middle of the night by pain going up my back. A heating pad and sitting up finally eased the pain so that I could go back to sleep. (I attributed the event to trying out a new Chinese restaurant in town, and I didn't return to that particular greasy spoon.) After, on the suggestion of friend, I began drinking one-half a lemon squeezed into warm water each morning. It made intuitive sense to me that it might break down grease in my liver or gall bladder, it tasted good to me, and it was cheaper than a glass of orange juice. I continued to drink the lemon water almost every morning until my cancer diagnosis last May.
How else did I pamper my gallbladder? I only ate peanuts or peanut butter in the morning or mid-day, never at night, and the same with fried foods, which I ate only occasionally anyway. Apple cider gave me indigestion, so I avoided it even though I like it. My doctor had told me that "cruciferous vegetables" (broccoli and cauliflower) or apples might give me trouble, but they didn't. I ate low fat meats, enzymes to help my food digest, lots of fresh fruits and vegetables, and avoided any food I thought would make my gallbladder flare up.
Only twice more, in the last year and a half, did I have painful indigestion. I thought I was taking really good care of my gallbladder, and helping to prevent stones. Gallbladder cancer was nothing I'd ever heard of.
Oh, and I should mention that my father had his gallbladder removed about twenty years ago, in his 60s. I've known for a while that in my family, gallbladders didn't do well, so I intensified my efforts to take care of mine.
I don't have an answer to the question that begins this blog, but I do know that it feels really, really strange to have the most pampered organ develop cancer. If I thought I was eating well before this diagnosis, and I developed cancer, then what do I eat now? If I thought that drinking the lemon water was being good to my gallbladder, then do I now think that I was too good, and perhaps would have had my stone-filled gallbladder removed a decade ago? I know from talking with others with cancer that it's natural to second guess our behavior before diagnosis and wonder if we could have done something different so that the cancer would not develop.
But, the purpose of my question is also asking whether or not there is anything I can do now to help keep the tumor from growing, the cancer from spreading. Should I eat organic food? Should I keep drinking lemon water, or stop? What would be a healthy diet? Does what I eat matter now? Reading some discussion boards, and responses to various blogs, I see that lots of people have opinions (tumors feed on sugars, cancer patients need to eat organic, everyone should try alternative therapies, see a nutritionist, etc.). I'm not sure whether or not my diet before the cancer developed had any impact on the development of the cancer, and I'm not sure whether or not what I eat now matters. Lots, and lots of questions. For now, and possibly never, no real answers.
Growing up, I heard about the gallbladder from an early age, because my mother had hers surgically removed when I was just a toddler. There were foods she didn't cook for us, mostly pork and other fatty foods, because her doctors had told her to avoid pork after her surgery. So, I had heard about gallbladders early on, even if I didn't understand what they did. In my thirties, I had my first "gallbladder attack" (my words, I didn't see a doctor then) when I was awakened in the middle of the night by pain going up my back. A heating pad and sitting up finally eased the pain so that I could go back to sleep. (I attributed the event to trying out a new Chinese restaurant in town, and I didn't return to that particular greasy spoon.) After, on the suggestion of friend, I began drinking one-half a lemon squeezed into warm water each morning. It made intuitive sense to me that it might break down grease in my liver or gall bladder, it tasted good to me, and it was cheaper than a glass of orange juice. I continued to drink the lemon water almost every morning until my cancer diagnosis last May.
How else did I pamper my gallbladder? I only ate peanuts or peanut butter in the morning or mid-day, never at night, and the same with fried foods, which I ate only occasionally anyway. Apple cider gave me indigestion, so I avoided it even though I like it. My doctor had told me that "cruciferous vegetables" (broccoli and cauliflower) or apples might give me trouble, but they didn't. I ate low fat meats, enzymes to help my food digest, lots of fresh fruits and vegetables, and avoided any food I thought would make my gallbladder flare up.
Only twice more, in the last year and a half, did I have painful indigestion. I thought I was taking really good care of my gallbladder, and helping to prevent stones. Gallbladder cancer was nothing I'd ever heard of.
Oh, and I should mention that my father had his gallbladder removed about twenty years ago, in his 60s. I've known for a while that in my family, gallbladders didn't do well, so I intensified my efforts to take care of mine.
I don't have an answer to the question that begins this blog, but I do know that it feels really, really strange to have the most pampered organ develop cancer. If I thought I was eating well before this diagnosis, and I developed cancer, then what do I eat now? If I thought that drinking the lemon water was being good to my gallbladder, then do I now think that I was too good, and perhaps would have had my stone-filled gallbladder removed a decade ago? I know from talking with others with cancer that it's natural to second guess our behavior before diagnosis and wonder if we could have done something different so that the cancer would not develop.
But, the purpose of my question is also asking whether or not there is anything I can do now to help keep the tumor from growing, the cancer from spreading. Should I eat organic food? Should I keep drinking lemon water, or stop? What would be a healthy diet? Does what I eat matter now? Reading some discussion boards, and responses to various blogs, I see that lots of people have opinions (tumors feed on sugars, cancer patients need to eat organic, everyone should try alternative therapies, see a nutritionist, etc.). I'm not sure whether or not my diet before the cancer developed had any impact on the development of the cancer, and I'm not sure whether or not what I eat now matters. Lots, and lots of questions. For now, and possibly never, no real answers.
Thursday, August 24, 2006
Naming the Relationship with Cancer, Part II
Since my post about whether to view the cancer as enemy or friend, I've continued to ask the question of how to name the relationship, my relationship, with the cancer that grows within me, and the cancer left when my surgery concluded in May. The responses of those who wrote in to this blog, and those of friends who emailed or called, were helpful as I continue to struggle with question. I absolutely get the perspective of the cancer as alien, dangerous and life threatening. And I have to recognize that those are my cells inside, gone haywire indeed, but my cells nonetheless. I am coming to think that the fallacy of the question I asked last time - Enemy or Friend? - is the fallacy of thinking I have to choose.
Dualism, making things appear to be exact opposites, forcing a choice between this or that, either-or, is something we do a lot in our culture. The problem with setting up that dichotomy, I think, is that life is so much more complex than a series of opposites. So, perhaps, it is with cancer and how I view it. Yes, I want it out of my body, and yes, I want to live. And perhaps I have to assume my "spiritual warrior" self to mobilize my energy, my focus, and my immune system to give myself the best quality and quantity of life I can, even with this diagnosis.
I have a young friend who seems to have straddled the question of how to name the cancer without needing to articulate the question. Lexie is the eight year daughter of my good friend Alice, and Lexie has a brain tumor, diagnosed when she was an infant. She has had surgery, and she is currently undergoing chemotherapy, no small thing for someone so young. Lexie's Reiki therapist helped her envision her tumor and a way of getting it out of her body, and Lexie and Alice work with the image each night before bed. After Lexie agreed that I could tell her story here, she described for me her process: "First, I use lasers to blast out the cysts which are in my tumor, making it smaller, and like a donut, with a big hole in the tumor. When the donut is left, I and pac-men eat the donut together, and after a while, all that's left are crumbs. Then the crumbs are rolled into my blood, and they come out my body in my pee. At the end, I imagine a nice, healthy brain." Alice comments that "in this image, Lexie and the lasers and the pac men all work togehter to 'eat' the tumor, which implies she is somehow owning it and making it a part of her in a nonharmful way, much as we consume food and it becomes part of us. So, I think rather than just blasting it out, she takes responsibility for consuming it and digesting it and eliminating it on her own." I think Lexie has chosen a perfect way to straddle this duality, and I'm grateful to Lexie and Alice for sharing these images. For Lexie, the chemo is hard, the tumor is resistant, and still Lexie is doing remarkably well.
Visualizing the cancer in order to mobilize the body's defenses was a technique proposed a number of years ago. The first proponents I know of were the Simontons. Even though I didn't have cancer at the time, and didn't know anyone close to me with it, I remember reading about their success in getting people to image the cancer, and then to use their body's immune system to fight the cancer. In the process, patients were asked to image the cancer, and also to image their immune system fighting the cancer. As I recall their approach, there was something organic about their thinking because it was using the body's natural defenses. I also like the idea that healing doesn't come just from the chemotherapy, and the efforts of others in reducing the size of the tumor and helping the body to get rid of these dangerous, wayward cells, but that it comes with full cooperation and active participation of the person affected.
So, perhaps I'll work on a visualization that seems effective to me, and works with my body's natural methods of healing. And, I've begun a conversation with my friend who befriended her cancer, but I haven't yet asked her how that worked for her. Please respond, if you have thoughts about all of this.
Dualism, making things appear to be exact opposites, forcing a choice between this or that, either-or, is something we do a lot in our culture. The problem with setting up that dichotomy, I think, is that life is so much more complex than a series of opposites. So, perhaps, it is with cancer and how I view it. Yes, I want it out of my body, and yes, I want to live. And perhaps I have to assume my "spiritual warrior" self to mobilize my energy, my focus, and my immune system to give myself the best quality and quantity of life I can, even with this diagnosis.
I have a young friend who seems to have straddled the question of how to name the cancer without needing to articulate the question. Lexie is the eight year daughter of my good friend Alice, and Lexie has a brain tumor, diagnosed when she was an infant. She has had surgery, and she is currently undergoing chemotherapy, no small thing for someone so young. Lexie's Reiki therapist helped her envision her tumor and a way of getting it out of her body, and Lexie and Alice work with the image each night before bed. After Lexie agreed that I could tell her story here, she described for me her process: "First, I use lasers to blast out the cysts which are in my tumor, making it smaller, and like a donut, with a big hole in the tumor. When the donut is left, I and pac-men eat the donut together, and after a while, all that's left are crumbs. Then the crumbs are rolled into my blood, and they come out my body in my pee. At the end, I imagine a nice, healthy brain." Alice comments that "in this image, Lexie and the lasers and the pac men all work togehter to 'eat' the tumor, which implies she is somehow owning it and making it a part of her in a nonharmful way, much as we consume food and it becomes part of us. So, I think rather than just blasting it out, she takes responsibility for consuming it and digesting it and eliminating it on her own." I think Lexie has chosen a perfect way to straddle this duality, and I'm grateful to Lexie and Alice for sharing these images. For Lexie, the chemo is hard, the tumor is resistant, and still Lexie is doing remarkably well.
Visualizing the cancer in order to mobilize the body's defenses was a technique proposed a number of years ago. The first proponents I know of were the Simontons. Even though I didn't have cancer at the time, and didn't know anyone close to me with it, I remember reading about their success in getting people to image the cancer, and then to use their body's immune system to fight the cancer. In the process, patients were asked to image the cancer, and also to image their immune system fighting the cancer. As I recall their approach, there was something organic about their thinking because it was using the body's natural defenses. I also like the idea that healing doesn't come just from the chemotherapy, and the efforts of others in reducing the size of the tumor and helping the body to get rid of these dangerous, wayward cells, but that it comes with full cooperation and active participation of the person affected.
So, perhaps I'll work on a visualization that seems effective to me, and works with my body's natural methods of healing. And, I've begun a conversation with my friend who befriended her cancer, but I haven't yet asked her how that worked for her. Please respond, if you have thoughts about all of this.
Thursday, August 17, 2006
Living, Really Living, Despite a Terminal Diagnosis
In my third blog entry, I began to write about the challenge of living with a terminal diagnosis. Some of the responses to that entry focused on concern for dying, and the experience of dying. I appreciated the experiences shared there, and the responses also helped me see that I wasn't completely clear about my difficulty in living the question. While I do not want to die, I do not fear death, and I trust that modern medicine has the capacity to relieve most/all of the pain that may accompany the end stages of this cancer.
So, what I am most concerned about is the living, living with a terminal diagnosis. What I wish I had asked my friends who were dying and knew that they were was what they thought about as they anticipated death, and what they had learned about living in the process of dying. What were the ways they had found to talk with loved ones about their impending death? What were the ways they had found to live more fully knowing that the end was approaching? What wisdom came newly to them as death approached? What new ways of thinking about living came to them as they lived in the face of death?
With all of these questions in mind, I am thrilled to find a book or an essay written by someone who has engaged these questions, whose thinking has gotten big enough to encompass big questions, big enough because they see their end. I found such book in Learning to Fall: Blessings of an Imperfect Life by Philip Simmons. Diagnosed in 1992 with ALS (Lou Gehrig's disease), he survived longer than many, and had the opportunity to write the essays in this wonderful, engaging book. He writes about dying, and he writes about living, and he writes about the natural world and what he can teach us about both.
About death, Simmons writes that acceptance of death provides a freedom to live differently, living in the present moment, living without attachment to thing in the same way as before. This is one of the things I have learned in the two and a half months since my diagnosis: live in the moment, appreciate the moment, be here now. The idea is not a new one, not to me, not a new thought from him, yet my experience of appreciation of the present moment has changed in these last months.
Yes, more often than I would like, I fall down the deep well of despair that a cancer diagnosis can bring.
And I also have discovered a new joy in sitting quietly in awe at the beauty of the moment before me. The sparkle of the ocean as the sun begins its descent. The beauty in my daughter's eyes. The poignancy of a moment sharing vulnerability with a friend. The mischievous sparkle in my son's face. The smell of cinnamon on a doughnut. The cold sweetness of Cherry Garcia ice cream on a hot summer night.
So, in the face of the terminal diagnosis, I am committed to living as fully as I can.
So, what I am most concerned about is the living, living with a terminal diagnosis. What I wish I had asked my friends who were dying and knew that they were was what they thought about as they anticipated death, and what they had learned about living in the process of dying. What were the ways they had found to talk with loved ones about their impending death? What were the ways they had found to live more fully knowing that the end was approaching? What wisdom came newly to them as death approached? What new ways of thinking about living came to them as they lived in the face of death?
With all of these questions in mind, I am thrilled to find a book or an essay written by someone who has engaged these questions, whose thinking has gotten big enough to encompass big questions, big enough because they see their end. I found such book in Learning to Fall: Blessings of an Imperfect Life by Philip Simmons. Diagnosed in 1992 with ALS (Lou Gehrig's disease), he survived longer than many, and had the opportunity to write the essays in this wonderful, engaging book. He writes about dying, and he writes about living, and he writes about the natural world and what he can teach us about both.
About death, Simmons writes that acceptance of death provides a freedom to live differently, living in the present moment, living without attachment to thing in the same way as before. This is one of the things I have learned in the two and a half months since my diagnosis: live in the moment, appreciate the moment, be here now. The idea is not a new one, not to me, not a new thought from him, yet my experience of appreciation of the present moment has changed in these last months.
Yes, more often than I would like, I fall down the deep well of despair that a cancer diagnosis can bring.
And I also have discovered a new joy in sitting quietly in awe at the beauty of the moment before me. The sparkle of the ocean as the sun begins its descent. The beauty in my daughter's eyes. The poignancy of a moment sharing vulnerability with a friend. The mischievous sparkle in my son's face. The smell of cinnamon on a doughnut. The cold sweetness of Cherry Garcia ice cream on a hot summer night.
So, in the face of the terminal diagnosis, I am committed to living as fully as I can.
Cancer: Call it enemy, or call it friend?
In his blog earlier this week, Leroy Siemens examines a posting from a mother who asks whether or not her daughter, who died from cancer, has "lost" if the fight for life against the cancer is a "war." Of course, he points out that we would not stigmatize the now dead cancer patient by saying they "lost the war," but so often those with cancer and those writing about cancer describe the fight for life as a war, a battle, a fight, and those fighting for their lives as warriors. I'm not entirely comfortable with this language, this image, although I certainly want to continue living, which would mean "winning the fight" against this gallbladder cancer.
A longtime friend who has had several different cancer diagnoses, including breast cancer, wrote to me soon after my diagnosis, and encouraged me to make ffriends with the cancer. "It is part of you," she wrote, "so why not make friends with it?"
Similar language is expressed by Dawna Markova in her book I Will Not Die an Unlived Life, where she describes her survival from a cancer diagnosis many years ago, and her discomfort with the "battle" language so typical of describing a fight for one's life following a cancer diagnosis. She writes:
When cancer first came into my life, people all around me treated it as the enemy. I was told I had to join the medical team and we'd fight together to defeat it. This was the wrong thing to say to someone who was the last one to be picked for any team. I was much happier sitting on the sidelines and encouraging the other players. I was totally unskilled at defeating anything. So, I secretly went my own way and decided that I was free to choose the meaning of the healing experience. I decided I would develop a friendly relationship with the cancer, which was something I was good at.
However, Markova does not go on to say how befriending the cancer helped her to heal from it, to move past it, to have it not take her life. Rereading this passage, I can see that one way would be to put the emphasis on "healing," not on cancer. I can also see a "lessons to be learned from the cancer" aspect of befriending it, but I don't see how that can lead to healing of the physical body. So, perhaps a part of me does want to "beat" the cancer, because I can't see how I can continue to live as long as it is in my body, and the doctors tell me that they know of no way to kill gallbladder cancer. Again rereading Markova's words, I am reminded of my competitive nature, my desire to excel, to do a thing well. But, more than being a "good" cancer patient, I want to be successful in my intense desire to have my life continue, and not to have it end with this cancer.
Battle image or friend image? Which has the potential for more healing, for me in this situation? I feel that I need to hold this question in my heart and see what answers come. While I wait for those insights, I am interested in the experiences, thoughts, impressions, wisdom from those reading this blog. And, perhaps I should call my friend who befriended her cancer and ask her how she did it.
A longtime friend who has had several different cancer diagnoses, including breast cancer, wrote to me soon after my diagnosis, and encouraged me to make ffriends with the cancer. "It is part of you," she wrote, "so why not make friends with it?"
Similar language is expressed by Dawna Markova in her book I Will Not Die an Unlived Life, where she describes her survival from a cancer diagnosis many years ago, and her discomfort with the "battle" language so typical of describing a fight for one's life following a cancer diagnosis. She writes:
When cancer first came into my life, people all around me treated it as the enemy. I was told I had to join the medical team and we'd fight together to defeat it. This was the wrong thing to say to someone who was the last one to be picked for any team. I was much happier sitting on the sidelines and encouraging the other players. I was totally unskilled at defeating anything. So, I secretly went my own way and decided that I was free to choose the meaning of the healing experience. I decided I would develop a friendly relationship with the cancer, which was something I was good at.
However, Markova does not go on to say how befriending the cancer helped her to heal from it, to move past it, to have it not take her life. Rereading this passage, I can see that one way would be to put the emphasis on "healing," not on cancer. I can also see a "lessons to be learned from the cancer" aspect of befriending it, but I don't see how that can lead to healing of the physical body. So, perhaps a part of me does want to "beat" the cancer, because I can't see how I can continue to live as long as it is in my body, and the doctors tell me that they know of no way to kill gallbladder cancer. Again rereading Markova's words, I am reminded of my competitive nature, my desire to excel, to do a thing well. But, more than being a "good" cancer patient, I want to be successful in my intense desire to have my life continue, and not to have it end with this cancer.
Battle image or friend image? Which has the potential for more healing, for me in this situation? I feel that I need to hold this question in my heart and see what answers come. While I wait for those insights, I am interested in the experiences, thoughts, impressions, wisdom from those reading this blog. And, perhaps I should call my friend who befriended her cancer and ask her how she did it.
Friday, August 11, 2006
Living, Not Dying, with Cancer
When I first received the diagnosis of terminal cancer, I was puzzled about how to live. Somehow, "taking to my bed" (as some folks used to do) until the cancer "took me" didn't seem to be an option. But, I was recovering from surgery, my body was weak and my energy low, so I wondered whether or not I would ever feel "normal" again. Two months later, I feel good, my energy is amazingly strong, and I have moved on from the initial shock of the diagnosis. But still, I wonder, how do you live, knowing, really knowing, that your days are numbered?
As a spiritual person, this question has felt especially important. I attend a Christian church, and I am part of a Christian community, and I also read spiritual material from many traditions, so I have been reading a lot. What is life? What is the purpose of our lives? Are we born to this life in order to learn certain lessons? Do we die when those lessons are learned? (I think the answer to that questions is no, but the question was in my mind.) I mention in my first posting that I haven't had good conversations about dying with those I have known who knew that their death was approaching, and I regret that. Why don't those who are dying, or who have a terminal diagnosis and are anticipating death, talk about it more? What are we afraid of? Are we afraid of death? The process of dying? I am determined to break the silence, for me and my diagnosis, at least, but I feel that I am stepping into a land with no map, a land where I know others have been, but have left too few clues., and no map to help me navigate.
On a practical note, one site that I found that would have been very helpful to me in the first weeks after my terminal diagnosis is one part of the hospice website. The hospice site includes an article by a doctor dying of cancer who provides practical personal and planning suggestions. But, he is not really talking about the spiritual aspects, the soul aspects of a terminal diagnosis.
Another place that I have found much insight and support and laughter and tears is the NPR website called My Cancer, by Leroy Sievers. Leroy's stories of his struggle with cancer, and the many responses from those with cancer, and those who love them, and those who are moved by his story, have enriched me immensely. Reading his blog and the comments has become a high point of each day. In his July 10 blog, Leroy talked about his fears, everyone's fears, and asks if we are afraid of dying, but he doesn't really talk about the spiritual aspects of a terminal diagnosis, either.
I believe in reincarnation (not really a Christian belief, I'm afraid, but . . . ), so I do believe that my soul, the essence of who I am really, not just my personality, will continue after my death. But I like this life, my family, my friends, my work, and I don't really want this life to end. So, how can I face death while still living fully?
One thing I am doing is feeling my gratitude, right here, right now, at being alive. I wake up each morning, and I am so happy to still be here, to be feeling good, today, to feel love for others and love from others. This EE Cummings poem has really been speaking to me:
i thank you God for most this amazing
day:for the leaping greenly spirits of trees
and a blue true dream of sky;and for everything
which is natural which is infinite which is yes
(i who have died am alive again today,
and this is the sun's birthday;this is the birth
day of life and love and wings:and of the gay
great happening illimitably earth)
how should tasting touching hearing seeing
breathing any--lifted from the no
of all nothing--human merely being
doubt unimaginable You?
(now the ears of my ears awake and
now the eyes of my eyes are opened)
Each morning, I feel that I have died and I am alive again, and I am grateful.
As a spiritual person, this question has felt especially important. I attend a Christian church, and I am part of a Christian community, and I also read spiritual material from many traditions, so I have been reading a lot. What is life? What is the purpose of our lives? Are we born to this life in order to learn certain lessons? Do we die when those lessons are learned? (I think the answer to that questions is no, but the question was in my mind.) I mention in my first posting that I haven't had good conversations about dying with those I have known who knew that their death was approaching, and I regret that. Why don't those who are dying, or who have a terminal diagnosis and are anticipating death, talk about it more? What are we afraid of? Are we afraid of death? The process of dying? I am determined to break the silence, for me and my diagnosis, at least, but I feel that I am stepping into a land with no map, a land where I know others have been, but have left too few clues., and no map to help me navigate.
On a practical note, one site that I found that would have been very helpful to me in the first weeks after my terminal diagnosis is one part of the hospice website. The hospice site includes an article by a doctor dying of cancer who provides practical personal and planning suggestions. But, he is not really talking about the spiritual aspects, the soul aspects of a terminal diagnosis.
Another place that I have found much insight and support and laughter and tears is the NPR website called My Cancer, by Leroy Sievers. Leroy's stories of his struggle with cancer, and the many responses from those with cancer, and those who love them, and those who are moved by his story, have enriched me immensely. Reading his blog and the comments has become a high point of each day. In his July 10 blog, Leroy talked about his fears, everyone's fears, and asks if we are afraid of dying, but he doesn't really talk about the spiritual aspects of a terminal diagnosis, either.
I believe in reincarnation (not really a Christian belief, I'm afraid, but . . . ), so I do believe that my soul, the essence of who I am really, not just my personality, will continue after my death. But I like this life, my family, my friends, my work, and I don't really want this life to end. So, how can I face death while still living fully?
One thing I am doing is feeling my gratitude, right here, right now, at being alive. I wake up each morning, and I am so happy to still be here, to be feeling good, today, to feel love for others and love from others. This EE Cummings poem has really been speaking to me:
i thank you God for most this amazing
day:for the leaping greenly spirits of trees
and a blue true dream of sky;and for everything
which is natural which is infinite which is yes
(i who have died am alive again today,
and this is the sun's birthday;this is the birth
day of life and love and wings:and of the gay
great happening illimitably earth)
how should tasting touching hearing seeing
breathing any--lifted from the no
of all nothing--human merely being
doubt unimaginable You?
(now the ears of my ears awake and
now the eyes of my eyes are opened)
Each morning, I feel that I have died and I am alive again, and I am grateful.
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