No one has actually asked me this question, although perhaps folks have wondered to themselves, or asked each other. With my serious diagnosis of gallbladder cancer, stage IV, and now the new tumor and chemotherapy, why keep working? My good friend Bev was talking about my diagnosis with some friends of hers who are around "our age" (60 or pushing thereabouts), and they wondered why I wasn't traveling the world, or doing something similarly exotic. Instead, I had to get "exotic" cancer!
There are the children and their schooling, although they could learn anywhere. There are a variety of answers to this question, and I'm sure I'm not going to think of all of them today. But the question, and my answers, have been in my mind, and I want to share them. I think my reasons carry varied weight at different moments. And I want to be clear that if I am too sick to work, I will certainly stop. I'm not a martyr, and folks at my work have been wonderfully supportive of me through my health challenges over the last 8 months and 1 week.
Why keep working? In no particular order . . .
*** Financial reasons. My income is a significant source of income for our family, and, almost as important, my work is the place providing my health insurance, which is wonderfully comprehensive. I think about someone struggling with a diagnosis like mine, and having financial problems and no health insurance to pay for doctor visits, medical examinations, chemotherapy, tests, all of the things that have become part of my life in these months. I wouldn't choose voluntarily to put my family in that position if I could help it. If I have to stop working, we'll figure it out, but . . . money and health insurance are important.
***Because I can. As long as I'm well enough to work, why not? I love what I do, have worked hard to get good at it, and appreciate the relationships I form with students, colleagues, and the larger university community, and I also appreciate the opportunity for intellectual stimulation.
***Generative expression. This phrase comes from psychoanalyst Erik Erikson, who envisioned eight stages over the life cycle, and the 7th is "generativity versus stagnation." He saw this as the main stage of mature adulthood, where (as I remember) one has the opportunity to be productive, as by using the education gained in childhood and young adulthood to develop a profession or career, and be a useful member of society. I'm getting a little long-winded here (me?), but this is the word that keeps coming to me. I want to be useful, I want to be productive, I want to have the normalcy that comes from continuing to work. I have no illusions about being indispensable; I know that I'm not. But, I am useful, I do know a lot about how my job works, and I value the opportunity to continue to share that.
***Something to focus on besides my body. I don't want to be so obsessed with every twinge and tweak in my body that I go nutty. With work to think about, I am taken out of my self- focus, and given other things to think about. Yes, my health is important, and I am doing my best to balance all of this, but work is part of the balance for me. Take it away, and I may become too focused on bodily functions and processes! And yes, I like to think that I'll know when the time comes to leave work behind and focus more exclusively on intimate relationships and my spiritual self, and to leave work behind. I don't think that time is now (and I recognize that my body could have a different agenda). Expectancy, and hope, not expectations.
A postscript to all of this is that I had a good day today. By late afternoon, I commented to Patty that I'm feeling good (and almost afraid to say so, in that superstitious way we humans can have). I feel more myself, my energy has been strong, and I feel more like the person I was before I began chemo. And, I confess, I stayed home to work today instead of going to the city, but I don't think it's just about that. I seem to be managing the nausea I occasionally feel, I'm getting used to "pins and needles" (and they are slowly subsiding), and I'm taking care of mouth, hands and feet against possible side effects (more on that in another post).
Today was a good day. I celebrate that. Tomorrow I return to the city to teach my classes, and I celebrate that as well.
Thanks to all of you who have been posting and sending me hope, love, support, and all sorts of good things. I so value your sharing this journey with me. Thank you.
Wednesday, January 31, 2007
Monday, January 29, 2007
Hope and a Christmas Rose
I looked over the last few blogs and decided that there were too many words, not enough pictures. Too much serious stuff.
So, here's a photograph of a Christmas Rose that's growing, right now, in my winter garden. (The link here is to someone else's Christmas Rose, so you can see what they look like open.) No, it's not really a rose, but that's what it's called, and it blooms in the winter, perhaps at Christmas. Years ago I read a short story about a Christmas Rose blooming in a garden in England, but I don't remember anything else about the story. Just that the flower bloomed in winter, and I was fascinated. I assumed it was a "real" rose, but as you can see from the picture, a Christmas Rose looks different, and I just learned that its Latin name is Helleborus Niger. If the flowers aren't too frozen by our cold winter, they will open (like the one on the website linked above) and have a pink hue. Next to my Christmas Rose is a Lenten Rose, which has dusty pink buds already coming up, but which blooms later in the winter, closer to Easter.
Why does any of this matter? To me, watching something grow, especially grow in the cold, bitter days of winter, is a sign of hope, a reminder about living things, things growing and surviving and thriving even in harsh circumstances. Like life continuing despite cancer.
So, I'm thinking about hope and my Christmas Rose today, four days from the beginning of my chemo treatment. I'm feeling good today, and tomorrow I go back to campus to teach my classes, third week of the semester. What speaks of hope to you?
Sunday, January 28, 2007
Chemo, Day 3
This is just a quick post to let all of you know that I'm doing fine, just tired. I'm still having some cold sensitivity, but the house is warmer, and so is the outside world. I haven't been nauseous, but I've been consistent in taking the anti-nausea medicine, and eating regular meals. I felt in a bit of chemo fog this morning, but that passed.
My most unexpected side effect is that when I begin to eat, my salivary glands shoot out saliva with such force that they ache momentarily. And when I began to cry during a tender moment during our church service this morning, I had a similar sense of pressure being released. Really weird!
Since this morning's tiredness and a good afternoon nap, I've been feeling better, more energetic. We had a wonderful church choir party this evening - potluck supper and lots of laughter, and that raised my spirits and helped me get out of myself.
Thanks to all of you for words of support and encouragement and prayer. It means more to me than I can say. I really, really appreciate the sense of being held by so many friends as I travel this road. And tomorrow is another day!
My most unexpected side effect is that when I begin to eat, my salivary glands shoot out saliva with such force that they ache momentarily. And when I began to cry during a tender moment during our church service this morning, I had a similar sense of pressure being released. Really weird!
Since this morning's tiredness and a good afternoon nap, I've been feeling better, more energetic. We had a wonderful church choir party this evening - potluck supper and lots of laughter, and that raised my spirits and helped me get out of myself.
Thanks to all of you for words of support and encouragement and prayer. It means more to me than I can say. I really, really appreciate the sense of being held by so many friends as I travel this road. And tomorrow is another day!
Saturday, January 27, 2007
Beginning Chemo
I have begun receiving the chemo treatments. Despite Thursday's confusion, Patty and I both awoke Friday with a conviction that we were going to make things happen, and that we would move forward on both the chemo and the stent for my kidney. And so we did. My internet friend, Jeanne, the assertive cancer patient, is so right about being assertive, and not passive!
Before I describe yesterday's adventure, I want to say that I feel good this morning, I slept well, and with the anti-nausea meds they gave me, I've only had a little queasiness, and that passed. And for those of you who said don't wait to take the medicine before chemo, know that I didn't! In fact, the chemo nurse, Linda, said that she always recommends that people take it, and I was given a pill and then some medicine IV before the infusion.
The details of how we maneuvered all of this aren't as important as the fact that we did. Suffice it say that we were just really clear with everyone (yes, we, as Patty was double teaming with me) that we wanted to proceed, and make things happen. Once we told the oncology nurse, Sue, that we did want to proceed with chemo, she got us back on the schedule. And the oncologist, Dr. J, finally found a urologist in the hospital who would see me, after the two of them talked about my scans. The urologist, Dr. D, didn't think my situation was an emergency, talked about the options for a stent, and said he would have needed an initial appointment/interview anyway, before performing the procedure. Later in the day, we were given an appointment next Friday, Feb. 2, for the procedure, which he wants to do under general anesthesia. I am trusting that in one week, even with the chemo doing its job on the tumor, my blood counts will be high enough for the procedure to happen.
So, what's it like to get chemo? Everyone in the chemo room was really friendly, really nice, and astonishingly relaxed. I liked all of my care providers. I had an infusion of Oxaliplatin, a drug that has been successfully used for colon cancer. The weird thing about this drug is that it gives the patient - that's me! - an exquisitely high sensitivity to cold. This begins with the treatment, and lasts for a few days afterward. No iced drinks, cover my mouth when going out in the cold air - and cover all exposed skin possible, try not to handle cold bottles from the refrigerator with bare hands . . . a strange and surprising list. Linda described the effect on skin as feeling like pins and needles (and I was to discover that she was right, as you will read). I had this infusion on the coldest day of this year, with the temperature never rising above 11 F during the day! The infusion is pretty straightforward, except that the drug can make your arm ache, and the nurses did slow down the infusion when I had one hive, and some soreness.
Two funny stories about the aftermath of the drug.
As we were driving home, I picked up a bottle of water that had spent the day in our car, in the garage four levels below the surface of the clinic building. There was no ice in it and it didn't feel cold, so I thought it was safe to drink. But no! When I swallowed the water, it felt as if there was slush on the top, as the roof of my mouth burst into millions of "pins and needles!" I was so surprised! The feeling continued down into my throat, where it feels more numb and freaky, but that passed also.
We live in an old house, and our furnace had been a little temperamental this week. It was fixed while we were gone, but when we returned home, where our good friend Sandy had brought the kids home from school, the house was still cool - 58 F. When I sat down to go to the bathroom, the toilet seat was so chilled that I had pins and needles on my butt where it had felt the cold seat! It passed in about five minutes, but was wierd! Even this morning, with the heat up to 65 F, when I walk around, the backs of my legs tingle occasionally, telling me that they aren't exactly toasty! Personally, I feel plenty warm enough!
The other drug I am taking is Xeloda, in pill form, each morning and evening after my meal. I started it last night, and had my second dose this morning after breakfast.
I will have more stories to share, I'm sure, but this is a beginning. I am grateful for all of the support from so many of you during this tumultuous week. Now I feel we have a course, a plan, we've begun to implement it, and this chemo and I are going to send this gallbladder cancer packing!
Before I describe yesterday's adventure, I want to say that I feel good this morning, I slept well, and with the anti-nausea meds they gave me, I've only had a little queasiness, and that passed. And for those of you who said don't wait to take the medicine before chemo, know that I didn't! In fact, the chemo nurse, Linda, said that she always recommends that people take it, and I was given a pill and then some medicine IV before the infusion.
The details of how we maneuvered all of this aren't as important as the fact that we did. Suffice it say that we were just really clear with everyone (yes, we, as Patty was double teaming with me) that we wanted to proceed, and make things happen. Once we told the oncology nurse, Sue, that we did want to proceed with chemo, she got us back on the schedule. And the oncologist, Dr. J, finally found a urologist in the hospital who would see me, after the two of them talked about my scans. The urologist, Dr. D, didn't think my situation was an emergency, talked about the options for a stent, and said he would have needed an initial appointment/interview anyway, before performing the procedure. Later in the day, we were given an appointment next Friday, Feb. 2, for the procedure, which he wants to do under general anesthesia. I am trusting that in one week, even with the chemo doing its job on the tumor, my blood counts will be high enough for the procedure to happen.
So, what's it like to get chemo? Everyone in the chemo room was really friendly, really nice, and astonishingly relaxed. I liked all of my care providers. I had an infusion of Oxaliplatin, a drug that has been successfully used for colon cancer. The weird thing about this drug is that it gives the patient - that's me! - an exquisitely high sensitivity to cold. This begins with the treatment, and lasts for a few days afterward. No iced drinks, cover my mouth when going out in the cold air - and cover all exposed skin possible, try not to handle cold bottles from the refrigerator with bare hands . . . a strange and surprising list. Linda described the effect on skin as feeling like pins and needles (and I was to discover that she was right, as you will read). I had this infusion on the coldest day of this year, with the temperature never rising above 11 F during the day! The infusion is pretty straightforward, except that the drug can make your arm ache, and the nurses did slow down the infusion when I had one hive, and some soreness.
Two funny stories about the aftermath of the drug.
As we were driving home, I picked up a bottle of water that had spent the day in our car, in the garage four levels below the surface of the clinic building. There was no ice in it and it didn't feel cold, so I thought it was safe to drink. But no! When I swallowed the water, it felt as if there was slush on the top, as the roof of my mouth burst into millions of "pins and needles!" I was so surprised! The feeling continued down into my throat, where it feels more numb and freaky, but that passed also.
We live in an old house, and our furnace had been a little temperamental this week. It was fixed while we were gone, but when we returned home, where our good friend Sandy had brought the kids home from school, the house was still cool - 58 F. When I sat down to go to the bathroom, the toilet seat was so chilled that I had pins and needles on my butt where it had felt the cold seat! It passed in about five minutes, but was wierd! Even this morning, with the heat up to 65 F, when I walk around, the backs of my legs tingle occasionally, telling me that they aren't exactly toasty! Personally, I feel plenty warm enough!
The other drug I am taking is Xeloda, in pill form, each morning and evening after my meal. I started it last night, and had my second dose this morning after breakfast.
I will have more stories to share, I'm sure, but this is a beginning. I am grateful for all of the support from so many of you during this tumultuous week. Now I feel we have a course, a plan, we've begun to implement it, and this chemo and I are going to send this gallbladder cancer packing!
Thursday, January 25, 2007
Emotionally Wrung Out
Okay, I created this title and had something to say even before I read the amazing and supportive comments in response to yesterday's blog. I wept my way through all of your wonderful comments. I am so, so tired. It's been such a long week of doctor appointments and very disappointing news, and aches in my belly, and confusion.
Even tomorrow's chemo is confused because the oncologist wants me to see a urologist to get a stent before I start chemo, and no urologist is available until Feb. 5. Can't wait that long to start chemo. So I don't know what will happen tomorrow, but I trust that something will. I am worried about the tumor, and feel that we need to tell it to stop growing NOW, and to shrink.
I told the students in two of my classes today about my cancer and impending chemo, and that was exhausting, too. I didn't want it to be a secret, something some of them knew or heard through the grapevine, and I also didn't want to give them more info than they could possibly want. I told them my chemo would make me sensitive to the cold weather, and that I could show up in class looking like the Abominable Snow-woman . . . or Nanook of the North . . . or something similar.
So I am exhausted from the emotional ups and downs of this week, yesterday feeling things were settled, and having the rug pulled out mid-day about this urologist appointment. And I am so, so grateful for all of your posts, all of your support, suggestions for staying calm and centered, and your words of wisdom. Do trust that I will not delay taking the anti-nausea medicine, and I appreciate all of the first-hand testimony about that! Thank you, thank you, dear friends, friends from church, from long ago and faraway, and now also, from summer camp, from so many parts of my life. I so appreciate your support.
Even tomorrow's chemo is confused because the oncologist wants me to see a urologist to get a stent before I start chemo, and no urologist is available until Feb. 5. Can't wait that long to start chemo. So I don't know what will happen tomorrow, but I trust that something will. I am worried about the tumor, and feel that we need to tell it to stop growing NOW, and to shrink.
I told the students in two of my classes today about my cancer and impending chemo, and that was exhausting, too. I didn't want it to be a secret, something some of them knew or heard through the grapevine, and I also didn't want to give them more info than they could possibly want. I told them my chemo would make me sensitive to the cold weather, and that I could show up in class looking like the Abominable Snow-woman . . . or Nanook of the North . . . or something similar.
So I am exhausted from the emotional ups and downs of this week, yesterday feeling things were settled, and having the rug pulled out mid-day about this urologist appointment. And I am so, so grateful for all of your posts, all of your support, suggestions for staying calm and centered, and your words of wisdom. Do trust that I will not delay taking the anti-nausea medicine, and I appreciate all of the first-hand testimony about that! Thank you, thank you, dear friends, friends from church, from long ago and faraway, and now also, from summer camp, from so many parts of my life. I so appreciate your support.
Wednesday, January 24, 2007
Bad News %>(
My concerns on Monday, looking at the scans, were well founded. I have a "recurrence" - a tumor - in the area where my gallbladder used to be, and where my cancerous bile duct was left. I think it's big - 4.5 cm x 3.7 - but the doctors don't seem to be particularly worried about its size. The really bad thing about this bad news is that the tumor is encroaching on my liver, my colon and my ureter - the tube that carries urine from the kidney. So, if it keeps growing, it could have a very bad impact on the functioning of those organs. I met with both the oncologist, Dr. J, and the surgeon, Dr. M, today, and got lots of information about what to watch out for. And, I've made a decision to begin chemotherapy.
I first got a preview of this tumor when Dr. M called me Monday afternoon to describe what he saw on the scan. He's pretty good at reading the scan, and saw the tumor, and described his concern. Then yesterday his assistant faxed over the radiologist's report on the reading, including details about the tumor, and my bloodwork, which isn't good for my liver, but Dr. J didn't think the numbers were that bad, compared to what he's seen. So, I've had two days to digest this information - and to get really, really upset about it. Tonight I'm a little calmer because information and a plan of action helps me feel less out of control.
While my conference with Dr. E at Dana Farber made me think about changing docs, for the moment I've pretty much decided to go with what's familiar, and stay at Beth Israel Hospital for my treatment. I have an appointment to begin treatment this Friday morning. (Yes, that's two days away.) I met the treatment nurse, Linda, and the nurse oncology coordinator, Sue, today, and had a "tour" of the room where they do the infusions. Came home with an armload of information, including lots of warnings about the side effects or potential side effects. The two drugs I'm planning to take (unless I change my mind tomorrow) are Xeloda (capecitabine), taken orally as a pill twice a day, and Oxaliplatin, taken by infusion once in three weeks.
As I anticipate this next phase of dealing with my disease, I would ask those of you following my journey to hold me in prayer and love and light, and to see me tolerating the chemo well. No side effects - few side effects - lots of good days still. I have apprehension, but the intrusion of this tumor makes entering chemo easier on balance. I hope to hold my expectancy and hope for the future.
I first got a preview of this tumor when Dr. M called me Monday afternoon to describe what he saw on the scan. He's pretty good at reading the scan, and saw the tumor, and described his concern. Then yesterday his assistant faxed over the radiologist's report on the reading, including details about the tumor, and my bloodwork, which isn't good for my liver, but Dr. J didn't think the numbers were that bad, compared to what he's seen. So, I've had two days to digest this information - and to get really, really upset about it. Tonight I'm a little calmer because information and a plan of action helps me feel less out of control.
While my conference with Dr. E at Dana Farber made me think about changing docs, for the moment I've pretty much decided to go with what's familiar, and stay at Beth Israel Hospital for my treatment. I have an appointment to begin treatment this Friday morning. (Yes, that's two days away.) I met the treatment nurse, Linda, and the nurse oncology coordinator, Sue, today, and had a "tour" of the room where they do the infusions. Came home with an armload of information, including lots of warnings about the side effects or potential side effects. The two drugs I'm planning to take (unless I change my mind tomorrow) are Xeloda (capecitabine), taken orally as a pill twice a day, and Oxaliplatin, taken by infusion once in three weeks.
As I anticipate this next phase of dealing with my disease, I would ask those of you following my journey to hold me in prayer and love and light, and to see me tolerating the chemo well. No side effects - few side effects - lots of good days still. I have apprehension, but the intrusion of this tumor makes entering chemo easier on balance. I hope to hold my expectancy and hope for the future.
Monday, January 22, 2007
Scanxiety
I owe the title of this blog to one of those who commented on Leroy's blog recently about the anxiety that scans can bring. . . . scanxiety. I knew exactly what she meant.
I wrote this brief "poem" below last Thursday, when I was laid low by pre-scanxiety. Today I am home again, after having my CT scan this morning and having blood drawn for testing. And of course I've looked at the CT pictures, and I can see the new "damned spot" in the abdominal wall, although (by my inexact measurements) it only seems to be 1/3 again larger (from 1.5 cm to 1.9 or so). And something is going on with my kidneys - one of them didn't light up in the contrast dye. I don't know what that means, but I don't like it. Sometime today, I'll talk to the surgeon, Dr. M, and see what his response is to the scan, and what he thinks about my kidney. Until then, I'm going to grade some papers (yes, I do give homework early in the semester!) and sit under the sunlamp for a while.
Am I anxious? Yes, unfortunately.
What is to be done with all of my anxiety?
It fills my body, from tense toes to aching neck and head.
I long for my lost, if false, immortality.
I weep for the body I could count on
To carry me through the day reliably,
To think the thoughts needing thinking,
To shoulder the walking, talking, opening, eating, being
Of daily life.
Where can I put my anxiety?
In my mind, I release it, over and over again,
But the body stores it against my will and
Suddenly I am laid low by tension in all of my body,
Making it impossible to go through my day as planned.
I weep for the body I have lost, already.
I wrote this brief "poem" below last Thursday, when I was laid low by pre-scanxiety. Today I am home again, after having my CT scan this morning and having blood drawn for testing. And of course I've looked at the CT pictures, and I can see the new "damned spot" in the abdominal wall, although (by my inexact measurements) it only seems to be 1/3 again larger (from 1.5 cm to 1.9 or so). And something is going on with my kidneys - one of them didn't light up in the contrast dye. I don't know what that means, but I don't like it. Sometime today, I'll talk to the surgeon, Dr. M, and see what his response is to the scan, and what he thinks about my kidney. Until then, I'm going to grade some papers (yes, I do give homework early in the semester!) and sit under the sunlamp for a while.
Am I anxious? Yes, unfortunately.
What is to be done with all of my anxiety?
It fills my body, from tense toes to aching neck and head.
I long for my lost, if false, immortality.
I weep for the body I could count on
To carry me through the day reliably,
To think the thoughts needing thinking,
To shoulder the walking, talking, opening, eating, being
Of daily life.
Where can I put my anxiety?
In my mind, I release it, over and over again,
But the body stores it against my will and
Suddenly I am laid low by tension in all of my body,
Making it impossible to go through my day as planned.
I weep for the body I have lost, already.
Saturday, January 20, 2007
Second Opinion
This is a quick update on yesterday's appointment for a second opinion at Dana Farber Cancer Institute. I've received one concerned phone call, and Patty a worried email about the appointment because I said, in my post about Tia, that I'd write more later. I'm fine. The new oncologist, Dr. E, agrees that I have gallbladder cancer (I didn't expect a different result), and he gave me lots of information, answered many questions, and gave me much to think about. Last night and today I felt as if I my brain cells, like little cogs, were whirring and spinning, processing all of the information. And, frankly, last night I was overwhelmed by the day, having met Tia in the morning, and then spending three and a half hours on site at Dana Farber, including almost an hour and a half with the doctor.
Another detail: I have my next CT scan on Monday, and see my current oncologist, Dr. J, and my surgeon, Dr. M, next Wednesday. So I'm really in the middle of this month's process. With that disclaimer, here are some details. . . .
Dr E agrees that he would stage my cancer as Stage IV. I thought I'd heard that from my other doctors last summer, but then when I have been doing so well, I thought I'd misremembered or misunderstood. He also agrees that my cancer is slow growing, and that my progress has been surprising. His nurse practitioner called my cancer cells "indolent," a fancier word than "pokey," but meaning the same thing. Slow growing!
After examining the latest "spot" in my abdomen and looking at it on the November scan, their radiologist and Dr E agree that it's likely cancer, another implant. He gave me lots of options to consider with it, though. Have it surgically removed (but it's in the abdominal wall, which is more likely to have consequences for those stomach muscles afterward), have radiation, have chemo, do nothing. Part of the "do nothing" approach is to take the time to look into immunology treatment for gallbladder cancer. Why keep the "spot" if I'm considering immunotherapy? Sometimes they need an existing, live tumor to harvest cancer cells from the person being treated. Also, if I begin chemo and have a tumor that can be measured, it's a way of telling whether or not my cancer responds to that particular chemo. Otherwise, it's all guesswork.
There are efforts at developing immunotherapy for various cancers in the U.S. and across the globe. However, since gallbladder cancer is so rare - or exotic - there are probably no existing trials, but it's worth seeing if someone would want to do one. And, Dr. E said he thinks I'd be a great candidate for immunotherapy, because I'm asymptomatic and have slow growing cancer. After I've done some more research about the immunotherapy, and have more time, I'll post about it, including some links.
We also talked about chemotherapy, various reasons to begin it, and different levels - mild chemo, moderate, aggressive. No one had talked with me about that, and about considering my options and how to think about choosing. That was very helpful, and gives me good background as I meet with my doctors in the week ahead.
That's the quick version. I got the larger conversation about gallbladder cancer that I wanted when I scheduled this appointment, and now I have a lot to think about.
Another detail: I have my next CT scan on Monday, and see my current oncologist, Dr. J, and my surgeon, Dr. M, next Wednesday. So I'm really in the middle of this month's process. With that disclaimer, here are some details. . . .
Dr E agrees that he would stage my cancer as Stage IV. I thought I'd heard that from my other doctors last summer, but then when I have been doing so well, I thought I'd misremembered or misunderstood. He also agrees that my cancer is slow growing, and that my progress has been surprising. His nurse practitioner called my cancer cells "indolent," a fancier word than "pokey," but meaning the same thing. Slow growing!
After examining the latest "spot" in my abdomen and looking at it on the November scan, their radiologist and Dr E agree that it's likely cancer, another implant. He gave me lots of options to consider with it, though. Have it surgically removed (but it's in the abdominal wall, which is more likely to have consequences for those stomach muscles afterward), have radiation, have chemo, do nothing. Part of the "do nothing" approach is to take the time to look into immunology treatment for gallbladder cancer. Why keep the "spot" if I'm considering immunotherapy? Sometimes they need an existing, live tumor to harvest cancer cells from the person being treated. Also, if I begin chemo and have a tumor that can be measured, it's a way of telling whether or not my cancer responds to that particular chemo. Otherwise, it's all guesswork.
There are efforts at developing immunotherapy for various cancers in the U.S. and across the globe. However, since gallbladder cancer is so rare - or exotic - there are probably no existing trials, but it's worth seeing if someone would want to do one. And, Dr. E said he thinks I'd be a great candidate for immunotherapy, because I'm asymptomatic and have slow growing cancer. After I've done some more research about the immunotherapy, and have more time, I'll post about it, including some links.
We also talked about chemotherapy, various reasons to begin it, and different levels - mild chemo, moderate, aggressive. No one had talked with me about that, and about considering my options and how to think about choosing. That was very helpful, and gives me good background as I meet with my doctors in the week ahead.
That's the quick version. I got the larger conversation about gallbladder cancer that I wanted when I scheduled this appointment, and now I have a lot to think about.
Friday, January 19, 2007
Combating Cancer Loneliness - Meeting Tia!
As you can see from this photo, Tia and I met today at Dana Farber Cancer Institute - in the cafeteria, actually! I wrote about Tia when I wrote about the loneliness of having a rare cancer. And, for the record, Tia's daughter Liana, who was also present at our meeting, says it's not "rare" cancer, it's "exotic" cancer! Patty was there, too, and the four of us talked about scans and kids and cancer. Tia got her results this morning, and the news was good; her latest met hasn't changed in size. My appointment, a second opinion with an oncologist at Dana Farber, was in the afternoon, and I'll write more about it later.Like ambassadors from Cancer World: those diagnosed with gallladder cancer, we brought small gifts to each other. Tia had a wonderful photo of her son's wedding last weekend in a beautiful outdoor site in Hawaii. We gave her two notecards, each made of art work by our kids. We talked about doctors and scans and living with gallbladder cancer.
So, now I can say that I have actually met someone else with gallbladder cancer! We have in common slow-growing cancer (Tia is 17 months post diagnosis), a fierce will to live, and a hope and faith in the future. Tia is a comrade soul, and I feel less lonely knowing her.
Somehow I feel that this post should be longer, but the beauty of our meeting for me was that it felt like old friends getting back together after a long time, even though we had never met before. The conversation flowed freely, and was mostly about ordinary life, connections in place and time, and a developing friendship. I guess that's all I need to say!
Monday, January 15, 2007
"Of Dragons and Garden Peas: A Cancer Patient Talks to Doctors"
Last week, I received in the mail a copy of an essay written by Alice Stewart Trillin, entitled "Of Dragons and Garden Peas: A Cancer Patient Talks to Doctors." It was sent to me by my friend Maria U, who saw a reference to it, knew that I would resonate with it, and had to travel to a real (not virtual) library to get me a copy. She was so right that I would resonate with it, and I thank her, and I want to share some of this essay with those of you who read my blog.Published in vol. 304, No. 12 of The New England Journal of Medicine, on March 19, 1981, "Of Dragons and Garden Peas: A Cancer Patient Talks to Doctors" is based on a talk given to medical students at Cornell and Albert Einstein medical schools by Alice Trillin, who was an English teacher, a writer, and an educational consultant. This is a powerful, wonderful essay that speaks to the issues faced by so many of us today who are struggling with a cancer diagnosis. Unfortunately, it appears that you can't read the essay online, but have to order a copy from the NE Journal. There is a summary on the website known as the Literature, Arts & Medicine Database, and you can see how to order a copy, or have one-time access to the article for a fee through the NE Journal of Medicine. Or, you can do what Maria U did, and visit a real library that includes medical journals to read the essay.
Although she wrote this 26 years ago, Trillin's issues, questions and analysis have very much applied to my more recent diagnosis and experience. Unlike me, she did not feel changed by her diagnosis, but rather was struck by the banality of the experience of having a cancer diagnosis and treatment. She does a wonderful job of articulating the issue of mortality, and how our human, collective and individual fear of dying makes us reluctant to engage this conversation with those diagnosed with cancer. (This accurately reflects my experience, especially last summer, as I wrote in my January 13 post.)
Trillin writes, "We are all afraid of dying. ... Our fear of death makes it essential to maintain a distance between ourselves and anyone who is threatened by death. Denying our connection to the precariousness of others' lives is a way of pretending that we are immortal." In those lines, she expresses so clearly what I felt soon after my diagnosis, and have continued to feel. I am so grateful for her ability to articulate clearly this human condition. She continues "We need this deception - it is one of the ways we stay sane - but we also need to be prepared for the times when it doesn't work. . . . for me . . . it is particularly important to face the fact of death squarely, to talk about it with one another." She continues that "[c]ancer connects us to one another because having cancer is an embodiment of the existential paradox that we all experience: we feel that we are immortal, yet we know that we will die."
She goes on to consider the doctor-patient relationship, and the ways in which we are talismans for each other. Talismans, she points out, give us control over the things we are afraid of. First, for patients, doctors and medicine in general are talismans, staging a drama "in which we pretend that doctors have the power to keep us well." Of course! Isn't this the reason that for generations, patients have turned over decision making and questions to doctors, to decide how much to tell us, when and how? This has changed for many of us, certainly since Trillin wrote this article, and yet many of us as patients want to maintain the illusion that doctors, nurses, all those involved in our treatment, know best and will save us. I didn't know until I was diagnosed last May that I didn't want to turn over that power, but rather wanted to be a co-partner in the process, and be given the information and tools that were available to help me understand what was happening.
Patients are also talismans for doctors, Trillin maintains. "Doctors defy death by keeping people alive. To a patient, it becomes immediately clear that the best way to please a doctor is to be healthy. If you can't manage that, the next best thing is to be well-behaved." This was an aspect of the relationship I hadn't considered, although I can imagine how hard it can be for doctors, nurses, and other medical personnel to work in an area of medicine where patients frequently die while under their care.
Another talisman Trillin identifies is that of the will. That we wish to will ourselves well, to list all of the things tying us to life, to let them and our will be enough to keep us alive. She goes on to point out that part of this is believing that illness and death can somehow be avoided by having the right attitude. Trillin also observes that a good friend who died from cancer a few years after her own diagnosis had absolutely the strongest will to live of anyone she had known, and so stands for her as an example of the failure of this talisman. I absolutely value the importance of a positive attitude, and bringing one's full will to fighting illness and fighting for life. But there is a danger in others cheering on those of us with cancer or other life threatening illnesses that if we keep up a good attitude, we will survive. Unfortunately, it's not that simple.
About the garden peas in the title, she observes that sometimes the details of our daily lives, the moments of living, of valuing the planting, the nurturing of treasured garden peas, also becomes a talisman. Being well enough to value the moment is a gift after being too sick to attend to the details of daily life, but even this talisman has its limits. Because I love to garden, and watch spring bulbs, early summer flowers, and especially my raspberries, bloom and (for the raspberries) then fruit, this image really worked for me. Right now in my winter garden, my Christmas Rose is sending up nodding blooms. I try to look at it each day, and love its white winter blossom when all else is dormant.
About these talismans, she comments that of course their "charms" don't always work. However, she also is not suggesting that these talismans should be abandoned, merely that their limits should be recognized. In a later article about her cancer experience, she defines the dragon as that which sleeps inside everyone who has ever had cancer. It is sleeping, she implies, and we do not want it to awaken. "We will never kill the dragon," she writes in conclusion here. "But each morning we confront him. Then we give our children breakfast, perhaps put a bit more mulch on the peas, and hope that we can convince the dragon to stay away for a while longer."
I knew before I read this essay that Alice Trillin had died. In September, 2001, she died of cardiac arrest; her heart problems came from the radiation she received 25 years earlier for her lung cancer. Her husband, Calvin Trillin, wrote that one could say she died of the treatment rather than the disease, but that there is no question she would have been grateful for those additional 25 years.
Sunday, January 14, 2007
Another Damned Spot?
Yes, I think I feel another damned spot in my abdomen, this one a little deeper and a little larger, and also close to my incision. I actually felt this in November, before the other "spot" was removed, but I thought perhaps it was scar tissue. Now I can feel that it's more rounded than it was, that it's grown a bit, and I can see it on the scans from November when I look for it. Curses!
I called the surgeon, Dr. M, this week after "spotting" it on the scan, and he said that it could be another "implant" and that it would be more difficult to treat than the first since it's deeper. (It seems to be in the abdominal wall.) As I mentioned in my December 30 post, my CA 19-9 numbers have been rising, and I've known that this next scan would be important to determine whether or not to start "treatment" (read chemotherapy) besides "watchful waiting." Dr. M mentioned this next scan, and said that if there is sign of spread in my abdomen along with this "spot" and rising scores, treatment will probably be indicated. (And this is what the oncologist, Dr. J, said after the last CA 19-9 numbers.) In an amazing moment of putting a positive spin on my disappointing discovery, Dr. M said that if this "spot" is another small cancer tumor, and I begin chemotherapy, I'll be able to tell partly if the chemo is working by feeling whether there's a change in that spot. He is amazing! And, I suppose he's right!
Some folks asked me in person after my first spot was removed on December 4 if that was a metatasis, and I said no. At least as I understand it, that spot (and perhaps this one) was an "implant," which was a cell or collection of cells that escaped as the surgeons pulled out my sick gallbladder through the incision. As Dr. M described it, gallbladder cancer is particularly prone to escape and implant in or around the incision (and some cancers aren't prone to this; he mentioned colon cancer). So, the cell or collection of cells begins to grow, quickly or slowly, and creates a tumor. That's what my spot was. It's not a metatasis because it's not made of cells that have "hitch hiked" through the lymph or blood system, but rather because the cells were left where they settled in and grew. That's my understanding of the difference, at least.
These next two weeks are full of medical appointments, a scan, and quite likely, some decisions about how to proceed. I also begin teaching a new semester on this coming Tuesday. In the moment, I am holding an attitude of hope, of expectancy that I can handle whatever the news is, and whatever treatment follows.
I called the surgeon, Dr. M, this week after "spotting" it on the scan, and he said that it could be another "implant" and that it would be more difficult to treat than the first since it's deeper. (It seems to be in the abdominal wall.) As I mentioned in my December 30 post, my CA 19-9 numbers have been rising, and I've known that this next scan would be important to determine whether or not to start "treatment" (read chemotherapy) besides "watchful waiting." Dr. M mentioned this next scan, and said that if there is sign of spread in my abdomen along with this "spot" and rising scores, treatment will probably be indicated. (And this is what the oncologist, Dr. J, said after the last CA 19-9 numbers.) In an amazing moment of putting a positive spin on my disappointing discovery, Dr. M said that if this "spot" is another small cancer tumor, and I begin chemotherapy, I'll be able to tell partly if the chemo is working by feeling whether there's a change in that spot. He is amazing! And, I suppose he's right!
Some folks asked me in person after my first spot was removed on December 4 if that was a metatasis, and I said no. At least as I understand it, that spot (and perhaps this one) was an "implant," which was a cell or collection of cells that escaped as the surgeons pulled out my sick gallbladder through the incision. As Dr. M described it, gallbladder cancer is particularly prone to escape and implant in or around the incision (and some cancers aren't prone to this; he mentioned colon cancer). So, the cell or collection of cells begins to grow, quickly or slowly, and creates a tumor. That's what my spot was. It's not a metatasis because it's not made of cells that have "hitch hiked" through the lymph or blood system, but rather because the cells were left where they settled in and grew. That's my understanding of the difference, at least.
These next two weeks are full of medical appointments, a scan, and quite likely, some decisions about how to proceed. I also begin teaching a new semester on this coming Tuesday. In the moment, I am holding an attitude of hope, of expectancy that I can handle whatever the news is, and whatever treatment follows.
Saturday, January 13, 2007
When I Thought I Would Die Quickly, I . . .
Last May, when I was diagnosed with gallbladder cancer, I was told that most people with this diagnosis lived two to six months following diagnosis. I assumed that the doctors knew what they were talking about, and that I needed to get my affairs in order, and began to seriously take on my mortality. I also had a strong intuitive hit (that I've written about before) that I was not to assume that I would survive this cancer, that I was meant to fully engage my mortality. Then, the weeks passed, I regained my strength, recovered from my surgery, and felt good. "Confounding my doctors," I would say to folks who inquired about my apparent health in the weeks and months following my diagnosis.
Last month, I passed seven months following diagnosis, and found myself remembering some of things I felt about the mundane details of life in the weeks following my diagnosis.
When I thought I would die quickly, I
* resented paying my bills. Who cared that I had had my teeth cleaned in the month before my diagnosis, and would die with clean teeth? Or not? (I've had my teeth cleaned twice again since then, I'm glad to say.) And I felt this despite knowing that if I died with debts, my "estate" (whatever money or property I had at death) would, in fact, pay those debts. It was just a feeling, but I just didn't want to pay those bills for services I incurrred when I thought I'd be living for many decades. And, I should add, I did pay those bills, I just resented them.
* wanted to tell everyone that I had terminal cancer. I was still dealing with my diagnosis, and I wanted everyone to know and feel sorry for me. Except that this feeling was only a part of me, and I mostly didn't just blurt it out to everyone. The feeling seemed to come from some place that believed if I told enough people, and they believed me, I could believe it.
* kept saying that if the doctors hadn't surgically removed my gallbladder and other tissue so that the pathologist could test it, I wouldn't believe the diagnosis. Now, I know that denial is a frequent normal response of humans to information we don't like and don't want to believe, but I still remember how strong this feeling was. How could I be so sick if I felt so good? And I thought a lot about the surgery, because I learned from Dr. M, the surgeon, that if they had known I had cancer, they wouldn't have operated, and would instead have begun chemo and put in stents to relieve the buildup of bile.
* wept frequently. Life felt very precious, and I didn't want to leave it. Still don't.
* wanted to talk about death and dying, and our fear of it. It's hard to get people to talk with you about dying, I discovered. In general, those most willing to, because of their training and temperaments, perhaps, were our friends in ministry or training for ministry. I was grateful for those friends, because they would listen to me talk about the pain of receiving a terminal diagnosis, and talk about how I was feeling, with the weight of the terminal diagnosis in my heart and my soul. And a few of my very best friends stepped into this listening space with amazing grace and sweetness. I was frustrated when others acted as if I had just received any other serious, but not life-threatening, diagnosis. I wanted to shake them. "Can't you see what's happening to me? I want to talk about it!"
* had hope for the future, despite taking on my mortality, but still didn't imagine creating this blog in August, teaching through the fall semester, and sitting in my most comfortable chair on this January evening feeling like myself. Mostly, anyway, like myself, just changed by these months of living with this life changing diagnosis.
Last month, I passed seven months following diagnosis, and found myself remembering some of things I felt about the mundane details of life in the weeks following my diagnosis.
When I thought I would die quickly, I
* resented paying my bills. Who cared that I had had my teeth cleaned in the month before my diagnosis, and would die with clean teeth? Or not? (I've had my teeth cleaned twice again since then, I'm glad to say.) And I felt this despite knowing that if I died with debts, my "estate" (whatever money or property I had at death) would, in fact, pay those debts. It was just a feeling, but I just didn't want to pay those bills for services I incurrred when I thought I'd be living for many decades. And, I should add, I did pay those bills, I just resented them.
* wanted to tell everyone that I had terminal cancer. I was still dealing with my diagnosis, and I wanted everyone to know and feel sorry for me. Except that this feeling was only a part of me, and I mostly didn't just blurt it out to everyone. The feeling seemed to come from some place that believed if I told enough people, and they believed me, I could believe it.
* kept saying that if the doctors hadn't surgically removed my gallbladder and other tissue so that the pathologist could test it, I wouldn't believe the diagnosis. Now, I know that denial is a frequent normal response of humans to information we don't like and don't want to believe, but I still remember how strong this feeling was. How could I be so sick if I felt so good? And I thought a lot about the surgery, because I learned from Dr. M, the surgeon, that if they had known I had cancer, they wouldn't have operated, and would instead have begun chemo and put in stents to relieve the buildup of bile.
* wept frequently. Life felt very precious, and I didn't want to leave it. Still don't.
* wanted to talk about death and dying, and our fear of it. It's hard to get people to talk with you about dying, I discovered. In general, those most willing to, because of their training and temperaments, perhaps, were our friends in ministry or training for ministry. I was grateful for those friends, because they would listen to me talk about the pain of receiving a terminal diagnosis, and talk about how I was feeling, with the weight of the terminal diagnosis in my heart and my soul. And a few of my very best friends stepped into this listening space with amazing grace and sweetness. I was frustrated when others acted as if I had just received any other serious, but not life-threatening, diagnosis. I wanted to shake them. "Can't you see what's happening to me? I want to talk about it!"
* had hope for the future, despite taking on my mortality, but still didn't imagine creating this blog in August, teaching through the fall semester, and sitting in my most comfortable chair on this January evening feeling like myself. Mostly, anyway, like myself, just changed by these months of living with this life changing diagnosis.
Monday, January 08, 2007
Sunsets and Visualization
Back on October 7, I wrote about visualizing the cancer cells dancing in the sunset like Dorothy and her friends the Scarecrow, the Lion, and the Tin Man. I continue to do the visualization as often as I think of it, usually during meditation or when viewing a sunset. My image is still essentially that the cells are moving toward the sunset, a natural cell death (apoptosis), and out of my body. I have seen some stunningly beautiful sunsets over the past months, but usually when I don't have my camera handy. The sunset here was photographed from our front porch last month, and only begins to capture the colors and the beauty of this winter sunset viewed through the trees.
Sometimes the cancer cells bring their "own" images to the visualization experience, which is always a surprise, and sometimes a question. One day later in October, the cells were all backed up as if behind a locked door (like people trapped in a fire behind an exit door that won't open). I "opened" the door and watched the cells flood out, and I directed them to the sunset, wishing them "apoptosis" as they flowed. This image had me concerned about the cancer spreading quickly for a while, but with some time having passed since then, and having had a good scan in November, I'm less anxious. And, after that image, when I "gathered" the cells in my mind's eye to travel to the sunset, it seemed there were fewer cells than there had been.
In December, one morning, the cells had picks and shovels over their "shoulders" (well, where their shoulders would be if they had them! They actually do look a little like a Pac-Man, with his round body, with skinny arms and legs), and they were skipping and singing/whistling "Whistle While You Work." This image also gave me some pause, as I don't want those cancer cells doing any work but dying, but it came around the time of my day surgery to remove "the spot," so I'm hoping the work was to go into the sunset and off to the pathology lab!
This morning, the cells were in a playful mood, and they were rolling off to the sunset, and singing something. But now, despite racking my brain, I can't remember what they were singing!
After my first description of the visualization, my friend Susan H said that she imagined me waving a "magic wand" and saying "shazzam" or some such magical word. I had to admit that I don't usually see it with the magic, but everytime I visualize her image of it, I have a chuckle. And once or twice, I've had a wand to wave.
Does the visualization make a difference? I have the same answer I had four months ago. I just don't know. But visualizing the cells, and visualizing them heading for a natural cell death as they approach a gorgeous, colorful sunset, gives me some measure of working consciously to combat their spread. And that's a good thing.
Friday, January 05, 2007
Gratitude and Impatience
Since gratitude and patience are thought to be two virtues/positive attributes, it may seem strange to have gratitude and impatience together in a post title. Still, in this continuation of "what's changed in the last 7 months," these are two qualities I have cultivated in these months. I can't say that these additional thoughts came to me while washing dishes, but here they are.
Impatience first. While patience is the recognized virtue, impatience in the face of injustice or wrongdoing is a also an important virtue. Since my diagnosis, I just don't feel all that patient with nonsense, with cruelty, wrongheaded thinking, people treating each other badly.
So, this is where I get political. A year ago, I would have held my tongue in a "public" forum unless asked to speak, but now I don't have time or patience to suffer injustice. Tuesday, the Massachusetts legislature, sitting in Constitutional Convention, voted to put marriage equality on the ballot in 2008. I wept when I read of their actions, because Patty and I have been "married in Massachusetts" since June, 2004. I am deeply angered that anyone would want to take away from us (or would have denied it in the first place) the right to legal recognition of our relationship, and the benefits that society and the government have chosen to bestow on those in a legally recognized relationship. Their action doesn't finally put this proposed constitutional amendment on the ballot, as it must be passed by another session of the legislature. So, in the last day, I have contemplated personally visiting each of the 62 legislators who voted to move this proposed constitutional amendment on, and ask them to vote differently next time. And, if you aren't already familiar with this issue, and think that people should always have a right to vote on proposed constitutional amendments, ask yourself whether or not you think constitutional amendments should be used to take away the rights of any minority group. In addition, there's a reason why the legislature votes first. I'm going to ask those representatives to represent me and my family in their vote. I'm not naive, and I do realize that this is a hotly contested issue across the country, but right now, I want to say that this affects me, my life, my spouse, my children, and it hurts us.
As you can see, I feel impatient. I don't have 20-30 years, it seems, for society to get this right...
A postscript to this is that I am still working on my patience as a parent. That's a tough attribute to develop and maintain in parenting, I think.
Gratitude is a quality I've worked to develop all of my life. I try to remember to thank and appreciate those who have reached out to me, who have gifted me in some way. And, I keep working to do a still-better job of expressing my gratitude, to people in my life, and to God. I have felt immense gratitude for the gift of life in these past 7 months. I am grateful to God for my existence, and grateful to my parents for the gift of life made manifest. And I am grateful to all those souls I have met during my life, my fellow journeyers and teachers
I remember that when Patty and I first got together, 16 1/2 years ago, we developed a habit of sitting in silent grace before sharing a meal. After weeks of doing this, I realized that I felt immense gratitude for my job, my work, my profession. This may seem like an "of course" sort of moment, but I hadn't realized the depth of my gratitude until then. I certainly hadn't found the words to give thanks for a job I love.
As I was working on this post, I found an email from my friend Sandy, who shared this thought from her November calendar: Gratitude. More aware of what you have than what you don't. Recognizing the treasure in the simple - a child's hug, fertile soil, a golden sunset. Relishing in the comfort of the common - a warm bed, a hot meal, a clean shirt - Max Lucado
Those concrete, body comfort moments are an important piece of feeling gratitude, I think. Max Lucado has it right; the warm, familiar bed, comforting surroundings, loving presence, creature comforts attended to. More aware of what you have than what you don't. That's where I aim to be.
Impatience first. While patience is the recognized virtue, impatience in the face of injustice or wrongdoing is a also an important virtue. Since my diagnosis, I just don't feel all that patient with nonsense, with cruelty, wrongheaded thinking, people treating each other badly.
So, this is where I get political. A year ago, I would have held my tongue in a "public" forum unless asked to speak, but now I don't have time or patience to suffer injustice. Tuesday, the Massachusetts legislature, sitting in Constitutional Convention, voted to put marriage equality on the ballot in 2008. I wept when I read of their actions, because Patty and I have been "married in Massachusetts" since June, 2004. I am deeply angered that anyone would want to take away from us (or would have denied it in the first place) the right to legal recognition of our relationship, and the benefits that society and the government have chosen to bestow on those in a legally recognized relationship. Their action doesn't finally put this proposed constitutional amendment on the ballot, as it must be passed by another session of the legislature. So, in the last day, I have contemplated personally visiting each of the 62 legislators who voted to move this proposed constitutional amendment on, and ask them to vote differently next time. And, if you aren't already familiar with this issue, and think that people should always have a right to vote on proposed constitutional amendments, ask yourself whether or not you think constitutional amendments should be used to take away the rights of any minority group. In addition, there's a reason why the legislature votes first. I'm going to ask those representatives to represent me and my family in their vote. I'm not naive, and I do realize that this is a hotly contested issue across the country, but right now, I want to say that this affects me, my life, my spouse, my children, and it hurts us.
As you can see, I feel impatient. I don't have 20-30 years, it seems, for society to get this right...
A postscript to this is that I am still working on my patience as a parent. That's a tough attribute to develop and maintain in parenting, I think.
Gratitude is a quality I've worked to develop all of my life. I try to remember to thank and appreciate those who have reached out to me, who have gifted me in some way. And, I keep working to do a still-better job of expressing my gratitude, to people in my life, and to God. I have felt immense gratitude for the gift of life in these past 7 months. I am grateful to God for my existence, and grateful to my parents for the gift of life made manifest. And I am grateful to all those souls I have met during my life, my fellow journeyers and teachers
I remember that when Patty and I first got together, 16 1/2 years ago, we developed a habit of sitting in silent grace before sharing a meal. After weeks of doing this, I realized that I felt immense gratitude for my job, my work, my profession. This may seem like an "of course" sort of moment, but I hadn't realized the depth of my gratitude until then. I certainly hadn't found the words to give thanks for a job I love.
As I was working on this post, I found an email from my friend Sandy, who shared this thought from her November calendar: Gratitude. More aware of what you have than what you don't. Recognizing the treasure in the simple - a child's hug, fertile soil, a golden sunset. Relishing in the comfort of the common - a warm bed, a hot meal, a clean shirt - Max Lucado
Those concrete, body comfort moments are an important piece of feeling gratitude, I think. Max Lucado has it right; the warm, familiar bed, comforting surroundings, loving presence, creature comforts attended to. More aware of what you have than what you don't. That's where I aim to be.
Tuesday, January 02, 2007
What's changed in me in the last 7 Months?
Mulling over the arrival of a new year on the calendar, and that I'm still alive as 2007 has begun, I've been mentally listing some of the things that have changed in the 7 months, 9 days and some hours since my diagnosis of gallbladder cancer. Working on writing this post, I also remembered that I called this blog "Life Changing Cancer" for a reason. Even in August, I didn't feel that I was the same person I had been. So how have I changed?
In no particular order . . .
1. I think we have too much stuff, too many material possessions. I think I do, my kids do, my family does, Americans do, and I wonder what we are thinking. And I continue to struggle with where to put everything. For whatever reason, I didn't particularly think this before my diagnosis.
2. In keeping with #1, I find it easier to let go of things. I've been a collector all my life, saving all my favorite books, stones and seashells, and the elements of my varied craft projects, thinking I'd get back to them when I retired. I have carried my quilting fabric, books and patterns for years, through many moves, thinking I'd make quilts again. And I have quilted occasionally since I first learned how in the 70s, but I've never quilted like I did then. Last August, Patty, my friend Bev and I went through my finished quilt tops, and Bev took one home to have it finished. (I had made her a quilt in the 1970s, but it burned in a house fire a number of years ago.) In the fall, my younger sister, Carla, and I went through my containers of fabric, and cut pieces for quilts, and she took home a big box of fabric and pieces to work with. (Thinking about this, I realize I didn't really have to wait for a cancer diagnosis to move on some of these things!)
3. As you can see from #2, I no longer expect to be alive and doing projects in 30 years. I might be alive, but I no longer have that expectation, and it makes it easier to let go of things, and to make other choices. And if I am alive, maybe I'll be choosing some new craft projects!
4. I've done my best to identify the stressors in my life, and to reduce them whenever possible. I resigned from some of my work responsibilities in the summer, and I think more carefully before saying "yes" when asked to take on something new. As a result, I find it easier to say "no" when that's the right thing to do. I'm meditating regularly, and working consciously on stress relief.
5. I've been working on strengthening my spiritual self these past months. I felt connnected with my spirituality when this happened, but the diagnosis broke open something in me, something that wants more, wants to be more, and certainly wants my life to mean more.
6. I have a new empathy for people with chronic, life-threatening or terminal illness. I have been healthy all of my life, had my first surgery (and it was elective) at 52, and my first broken bone at 58. It's not that I blamed people with physical problems, it's that I just didn't understand their journey in some deep way because that had not been my life's path. Now, my new experience with the medical profession, and my readings of the stories of so many people's journey with cancer, have shifted my lack of understanding, my lack of empathy, for those, like me, in this situation.
7. I'm less likely to postpone joy. Last summer when our family traveled to the southwest for a long-planned "trip of a lifetime" to many national parks, Patty and I began to say "If not now, when?" We were more extravagant on that trip than we'd ever been (and we were still saying at campgrounds), and we didn't spend our life savings, but we have different priorities. When we talked about vacationing in the Caribbean in March 2007, we said "Let's go!" (and we're still staying at a campground). We will go back to St. John in the U.S. Virgin Islands in March, all of us, and if it's my last trip there, I will have gone to a place full of memories, and our family can make new memories. The last time there, Lucy was almost 5, and did some snorkeling while holding onto Patty, but now both kids can swim, and we suspect they will love snorkeling!
8. I frequently feel mortal. We all are, of course, but I didn't particularly feel mortal before this diagnosis. Some days I feel more mortal than others, but it's definitely a place I visit frequently.
Somehow, I think my list of changes was longer while I was washing dishes this afternoon, but this is what comes to me now. It's not an exhaustive list, but it's an honest one for the moment.
In no particular order . . .
1. I think we have too much stuff, too many material possessions. I think I do, my kids do, my family does, Americans do, and I wonder what we are thinking. And I continue to struggle with where to put everything. For whatever reason, I didn't particularly think this before my diagnosis.
2. In keeping with #1, I find it easier to let go of things. I've been a collector all my life, saving all my favorite books, stones and seashells, and the elements of my varied craft projects, thinking I'd get back to them when I retired. I have carried my quilting fabric, books and patterns for years, through many moves, thinking I'd make quilts again. And I have quilted occasionally since I first learned how in the 70s, but I've never quilted like I did then. Last August, Patty, my friend Bev and I went through my finished quilt tops, and Bev took one home to have it finished. (I had made her a quilt in the 1970s, but it burned in a house fire a number of years ago.) In the fall, my younger sister, Carla, and I went through my containers of fabric, and cut pieces for quilts, and she took home a big box of fabric and pieces to work with. (Thinking about this, I realize I didn't really have to wait for a cancer diagnosis to move on some of these things!)
3. As you can see from #2, I no longer expect to be alive and doing projects in 30 years. I might be alive, but I no longer have that expectation, and it makes it easier to let go of things, and to make other choices. And if I am alive, maybe I'll be choosing some new craft projects!
4. I've done my best to identify the stressors in my life, and to reduce them whenever possible. I resigned from some of my work responsibilities in the summer, and I think more carefully before saying "yes" when asked to take on something new. As a result, I find it easier to say "no" when that's the right thing to do. I'm meditating regularly, and working consciously on stress relief.
5. I've been working on strengthening my spiritual self these past months. I felt connnected with my spirituality when this happened, but the diagnosis broke open something in me, something that wants more, wants to be more, and certainly wants my life to mean more.
6. I have a new empathy for people with chronic, life-threatening or terminal illness. I have been healthy all of my life, had my first surgery (and it was elective) at 52, and my first broken bone at 58. It's not that I blamed people with physical problems, it's that I just didn't understand their journey in some deep way because that had not been my life's path. Now, my new experience with the medical profession, and my readings of the stories of so many people's journey with cancer, have shifted my lack of understanding, my lack of empathy, for those, like me, in this situation.
7. I'm less likely to postpone joy. Last summer when our family traveled to the southwest for a long-planned "trip of a lifetime" to many national parks, Patty and I began to say "If not now, when?" We were more extravagant on that trip than we'd ever been (and we were still saying at campgrounds), and we didn't spend our life savings, but we have different priorities. When we talked about vacationing in the Caribbean in March 2007, we said "Let's go!" (and we're still staying at a campground). We will go back to St. John in the U.S. Virgin Islands in March, all of us, and if it's my last trip there, I will have gone to a place full of memories, and our family can make new memories. The last time there, Lucy was almost 5, and did some snorkeling while holding onto Patty, but now both kids can swim, and we suspect they will love snorkeling!
8. I frequently feel mortal. We all are, of course, but I didn't particularly feel mortal before this diagnosis. Some days I feel more mortal than others, but it's definitely a place I visit frequently.
Somehow, I think my list of changes was longer while I was washing dishes this afternoon, but this is what comes to me now. It's not an exhaustive list, but it's an honest one for the moment.
Monday, January 01, 2007
A New Year
I don't have anything profound to say today, but I wanted to make my first post of 2007. And, I want to thank all of you who read my blog, who give me feedback, either through comments here, phone calls, emails, or other contact. Knowing that others are connecting with my story also combats the loneliness of this cancer, this gallbladder cancer.
I have an old-fashioned cold today, stuffy head and sneezing. Something "normal" about having a malady I've had many times over my life. I'm familiar with this one, unlike the still new experience of the cancer.
Tia sent me an old Apache blessing today, and it seems a good way to end this first posting of the new year. For all of you reading this,
May the sun
bring you new energy by day.
May the moon
softly restore you by night.
May the rain
wash away your worries.
May the breeze
blow new strength into your being.
May you walk
gently through the world and know
its beauty all the days of your life.
Blessings and healing to each of you, to me, to our world.
I have an old-fashioned cold today, stuffy head and sneezing. Something "normal" about having a malady I've had many times over my life. I'm familiar with this one, unlike the still new experience of the cancer.
Tia sent me an old Apache blessing today, and it seems a good way to end this first posting of the new year. For all of you reading this,
May the sun
bring you new energy by day.
May the moon
softly restore you by night.
May the rain
wash away your worries.
May the breeze
blow new strength into your being.
May you walk
gently through the world and know
its beauty all the days of your life.
Blessings and healing to each of you, to me, to our world.
Saturday, December 30, 2006
A Medical Update - My Gallbladder Cancer
I haven't written much about my medical state since the "spot" was removed, and I've been waiting to have a little more information before posting. I also know that some of you, my good friends and family who read this regularly, keep track of my scheduled doctor appointments, so I wanted to describe what's up for January.
First, I'm having a "second opinion" (I think of it more as a consultation) at Dana Farber Cancer Institute in Boston on Friday, January 19. I think of it as a consultation because I don't doubt the diagnosis, although I know that pathologists can be wrong. Mostly, I want to talk with an oncologist who has worked more with gallbladder cancer, just to get a sense of his/her medical opinion about the course of my disease. Patty and I contacted a doctor friend who contacted a doctor colleague at Dana Farber earlier this month asking who is "expert" in this cancer there, or in the U.S. His response was that no one there, or in this country, is expert in gallbladder cancer. (Raising the question several friends have asked: "Is there an expert in gallbladder cancer outside the U.S? I don't have an answer.) Anyway, I've already had all of my records sent to them, and if they had a cancellation in the meantime, I may go for the appointment sooner.
Second, my next CT scan will be Monday, Jan. 22, with my oncologist appointment two days later, on Jan. 24. (Unfortunately for me, with post-scan anxiety, that's the soonest the new oncologist, Dr. J, is willing to see me post-scan.) At that appointment, we'll look at the whole picture and either he'll recommend that we begin treatment, or that we continue "watchful waiting." Of course, those of you who know me know that I'll be coming home that day with the scans, which I'll study on my computer to see what I can see, before the radiologist issues a report.
Third, we have been tracking my tumor marker (through a blood test called CA 19-9) more closely in the weeks since my last scan, largely because of the "spot" and the discovery that it was cancer. Some information about this blood test:
1. Not everyone with gallbladder cancer has this blood test register. Tia told me that her current reading is "3" despite her current mets, and the doctor simply said that the test is meaningless for her.
2. The numbers can get very high when someone is really sick. My numbers were all below 100 before November, I know of folks with readings in the 3,000-4,000 range who are not symptomatic, but have mets, and I have read of folks with readings in the 10,000 range who are very sick.
3. Anything below 37 is considered "normal."
4. My readings have been going up, but not awfully. Here they are:
Nov. 22 - 137
Dec. 4 - 182
Dec. 12 - 190
Dec. 27 - 212
When the oncologist called yesterday with the blood test results, he talked with Patty and I missed him on my cell phone, but he apparently pointed out that this last was about a 10% increase. I personally was hoping my numbers would go down following the removal of the "spot," but that doesn't seem to be happening.
What's next? That depends on the scan on Jan. 22, and how I feel. If the scan indicates visible spread, and my CA 19-9 numbers continue to climb, I will probably begin treatment. If the scan is clean once again, I continue to feel good, and the CA19-9 numbers haven't changed much, then I probably won't begin treatment. There are obviously other possibilities, but we can see what things look like on my next appointment.
On the discussion boards, I've been reading in the last seven months about others with this disease who go downhill rapidly. I see more clearly now why my doctors were apprehensive about our trip to the southwest last summer, three weeks after my surgery and diagnosis. Since gallbladder cancer frequently doesn't respond to chemo at all, I also see why my self-report on how I feel is a real indicator of what should be done medically. Knowing that makes me a little anxious when I don't feel good; then I have to remind myself that I had days when I just didn't feel good before my diagnosis of gallbladder cancer! But it also makes me anxious when I have any digestive drama, and in the last few weeks, I've had a weird sensation in my middle a handful of times that feels like something being constrained, moving through a narrow opening. It's different from indigestion, and it passes pretty quickly, but it makes me worry about my bypass, about the cancer spreading in some way that would interfere with the ability of my GI tract to do its job.
Aside from that anxiety, I am feeling good, with my energy consistent, my body feeling strong, and my spirits generally good. I have two and a half weeks before I'm back on campus (although I have preparation to do for the new semester), and I hope to do some fun, crafty things and to relax a little over that time.
First, I'm having a "second opinion" (I think of it more as a consultation) at Dana Farber Cancer Institute in Boston on Friday, January 19. I think of it as a consultation because I don't doubt the diagnosis, although I know that pathologists can be wrong. Mostly, I want to talk with an oncologist who has worked more with gallbladder cancer, just to get a sense of his/her medical opinion about the course of my disease. Patty and I contacted a doctor friend who contacted a doctor colleague at Dana Farber earlier this month asking who is "expert" in this cancer there, or in the U.S. His response was that no one there, or in this country, is expert in gallbladder cancer. (Raising the question several friends have asked: "Is there an expert in gallbladder cancer outside the U.S? I don't have an answer.) Anyway, I've already had all of my records sent to them, and if they had a cancellation in the meantime, I may go for the appointment sooner.
Second, my next CT scan will be Monday, Jan. 22, with my oncologist appointment two days later, on Jan. 24. (Unfortunately for me, with post-scan anxiety, that's the soonest the new oncologist, Dr. J, is willing to see me post-scan.) At that appointment, we'll look at the whole picture and either he'll recommend that we begin treatment, or that we continue "watchful waiting." Of course, those of you who know me know that I'll be coming home that day with the scans, which I'll study on my computer to see what I can see, before the radiologist issues a report.
Third, we have been tracking my tumor marker (through a blood test called CA 19-9) more closely in the weeks since my last scan, largely because of the "spot" and the discovery that it was cancer. Some information about this blood test:
1. Not everyone with gallbladder cancer has this blood test register. Tia told me that her current reading is "3" despite her current mets, and the doctor simply said that the test is meaningless for her.
2. The numbers can get very high when someone is really sick. My numbers were all below 100 before November, I know of folks with readings in the 3,000-4,000 range who are not symptomatic, but have mets, and I have read of folks with readings in the 10,000 range who are very sick.
3. Anything below 37 is considered "normal."
4. My readings have been going up, but not awfully. Here they are:
Nov. 22 - 137
Dec. 4 - 182
Dec. 12 - 190
Dec. 27 - 212
When the oncologist called yesterday with the blood test results, he talked with Patty and I missed him on my cell phone, but he apparently pointed out that this last was about a 10% increase. I personally was hoping my numbers would go down following the removal of the "spot," but that doesn't seem to be happening.
What's next? That depends on the scan on Jan. 22, and how I feel. If the scan indicates visible spread, and my CA 19-9 numbers continue to climb, I will probably begin treatment. If the scan is clean once again, I continue to feel good, and the CA19-9 numbers haven't changed much, then I probably won't begin treatment. There are obviously other possibilities, but we can see what things look like on my next appointment.
On the discussion boards, I've been reading in the last seven months about others with this disease who go downhill rapidly. I see more clearly now why my doctors were apprehensive about our trip to the southwest last summer, three weeks after my surgery and diagnosis. Since gallbladder cancer frequently doesn't respond to chemo at all, I also see why my self-report on how I feel is a real indicator of what should be done medically. Knowing that makes me a little anxious when I don't feel good; then I have to remind myself that I had days when I just didn't feel good before my diagnosis of gallbladder cancer! But it also makes me anxious when I have any digestive drama, and in the last few weeks, I've had a weird sensation in my middle a handful of times that feels like something being constrained, moving through a narrow opening. It's different from indigestion, and it passes pretty quickly, but it makes me worry about my bypass, about the cancer spreading in some way that would interfere with the ability of my GI tract to do its job.
Aside from that anxiety, I am feeling good, with my energy consistent, my body feeling strong, and my spirits generally good. I have two and a half weeks before I'm back on campus (although I have preparation to do for the new semester), and I hope to do some fun, crafty things and to relax a little over that time.
Thursday, December 28, 2006
Combating the Loneliness of a Rare Cancer
When I was first diagnosed with gallbladder cancer last May and began researching the disease, I was stunned by how rare it is. I mentioned the statistics in an earlier post, but depending on whether or not bile duct cancer is included, there will be something between 3,000 and 8,700 cases of gallbladder cancer in the U.S. this year. Seeing those statistics, I realized that not only did I not know anyone, ever, who had had gallbladder cancer, or who even knew of someone, sometime, who had had gallbladder cancer, but that I am unlikely to meet anyone who has the disease. It turns out that I was wrong on the first count, as I learned recently that a friend's mother died from gallbladder cancer in the 1970s. However, the second point will probably be true unless I arrange to connect with one of my long-distance friends with gallbladder cancer in the months ahead.
I feel the loneliness of the diagnosis when I go onto a cancer website, and my cancer isn't listed. Anywhere. Well, somewhere. At the "big" sites, I can find it. The American Cancer Society does have information, as does the National Cancer Institute. There is a Rare Cancer Alliance, apparently formed by a woman who wanted to provide a central source of information and connection for rare cancers, but it combines bile duct and gallbladder cancer, and lists a total of 18 posts on the discussion board over the year 2006.
How do I counteract the loneliness? One thing is by writing this blog; I have told more than one person over past months that writing here is therapeutic, that it helps me process what's happening inside my body and inside my psyche and spirit. Hearing from friends and strangers that they've read my blog, and hearing them relate their responses and their experiences is a powerful antidote to my loneliness.
Just today, I had an email from a woman whose mother was just diagnosed with gallbladder cancer. She had found my blog, and some of the information I provided, and linked to. Her mother is stage 4 and not doing well, but I was glad she could find information on my site.
Another important antidote has been to connect with others who have gallbladder cancer. I haven't personally met anyone else with GBC - yet! - but I hope to. And even if we don't meet in person, I've made contact through the discussion boards (listed on the side links of the blog) at Johns Hopkins, Cholangiocarcinoma.org, and Cancer Compass. Those three discussion boards are essentially it for connection with others with the disease, or who have loved ones with the disease. In addition to the discussion boards, I've made contact by email with a few other folks with GBC - Woody (who has posted a comment on several occasions here), Melissa (who sent me an email that I wrote a post on - see November 8), and, most recently, Tia, from Hawaii.
Tia got my email address from Woody, who is compiling statistical information about those of us with GBC, and she wrote me with her story and then called me on the phone a week before Christmas. Tia is 17 months post diagnosis, and has been feeling good and doing well following surgery, radiation, and chemotherapy with 5FU. Now, she has some mets, including one under her clavicle that's been biopsied. She and her family are searching the internet for promising clinical trials or [alternative] treatments, something that might actually offer a cure. She's finding that her quest may take her outside the U.S. to a country where this cancer is not uncommon. That's Tia's story, briefly, but the exciting part for me was that we connected, about the disease, and surviving, and thriving, and having the rare cancer called gallbladder cancer. And, despite living in Hawaii, she has an oncologist at Dana Farber Cancer Institute in Boston, and we both have an appointment on Jan. 19 there. Perhaps we can meet!
On Dec. 23, the day after my gloomy post "Today, I don't want to know," Tia called me, to say that she knows how I feel. And she does. Ironically, she'd had an attack of sadness about the possibility of no more Christmases the same day I did. How affirming to have someone in my situation call to say she understands! (And I want to add that I sent her a draft of this post, so that she could edit and give the okay for the information about her life that I've provided here.)
What's most important about all of this? Connecting. I feel that all of us find healing in connection, in bringing our spirits, our souls into connection with the soul of another. In life, it can happen through a glance, a kind word, through true friendship where we are willing to be vulnerable with another, through faithfulness in relationship where we stay even when things are tough. And it can happen through the new technology, like the world wide web, and blogs, and the ability to find someone else who is struggling with issues like ours. Healing of the spirit can happen through connection, and I'm happy to have some of my loneliness alleviated by connecting with others affected by this rare cancer.
I feel the loneliness of the diagnosis when I go onto a cancer website, and my cancer isn't listed. Anywhere. Well, somewhere. At the "big" sites, I can find it. The American Cancer Society does have information, as does the National Cancer Institute. There is a Rare Cancer Alliance, apparently formed by a woman who wanted to provide a central source of information and connection for rare cancers, but it combines bile duct and gallbladder cancer, and lists a total of 18 posts on the discussion board over the year 2006.
How do I counteract the loneliness? One thing is by writing this blog; I have told more than one person over past months that writing here is therapeutic, that it helps me process what's happening inside my body and inside my psyche and spirit. Hearing from friends and strangers that they've read my blog, and hearing them relate their responses and their experiences is a powerful antidote to my loneliness.
Just today, I had an email from a woman whose mother was just diagnosed with gallbladder cancer. She had found my blog, and some of the information I provided, and linked to. Her mother is stage 4 and not doing well, but I was glad she could find information on my site.
Another important antidote has been to connect with others who have gallbladder cancer. I haven't personally met anyone else with GBC - yet! - but I hope to. And even if we don't meet in person, I've made contact through the discussion boards (listed on the side links of the blog) at Johns Hopkins, Cholangiocarcinoma.org, and Cancer Compass. Those three discussion boards are essentially it for connection with others with the disease, or who have loved ones with the disease. In addition to the discussion boards, I've made contact by email with a few other folks with GBC - Woody (who has posted a comment on several occasions here), Melissa (who sent me an email that I wrote a post on - see November 8), and, most recently, Tia, from Hawaii.
Tia got my email address from Woody, who is compiling statistical information about those of us with GBC, and she wrote me with her story and then called me on the phone a week before Christmas. Tia is 17 months post diagnosis, and has been feeling good and doing well following surgery, radiation, and chemotherapy with 5FU. Now, she has some mets, including one under her clavicle that's been biopsied. She and her family are searching the internet for promising clinical trials or [alternative] treatments, something that might actually offer a cure. She's finding that her quest may take her outside the U.S. to a country where this cancer is not uncommon. That's Tia's story, briefly, but the exciting part for me was that we connected, about the disease, and surviving, and thriving, and having the rare cancer called gallbladder cancer. And, despite living in Hawaii, she has an oncologist at Dana Farber Cancer Institute in Boston, and we both have an appointment on Jan. 19 there. Perhaps we can meet!
On Dec. 23, the day after my gloomy post "Today, I don't want to know," Tia called me, to say that she knows how I feel. And she does. Ironically, she'd had an attack of sadness about the possibility of no more Christmases the same day I did. How affirming to have someone in my situation call to say she understands! (And I want to add that I sent her a draft of this post, so that she could edit and give the okay for the information about her life that I've provided here.)
What's most important about all of this? Connecting. I feel that all of us find healing in connection, in bringing our spirits, our souls into connection with the soul of another. In life, it can happen through a glance, a kind word, through true friendship where we are willing to be vulnerable with another, through faithfulness in relationship where we stay even when things are tough. And it can happen through the new technology, like the world wide web, and blogs, and the ability to find someone else who is struggling with issues like ours. Healing of the spirit can happen through connection, and I'm happy to have some of my loneliness alleviated by connecting with others affected by this rare cancer.
Monday, December 25, 2006
Making Christmas Memories
I'm pleased to say that I didn't stay in the state I was on December 22, and that I've treasured some moments with both of the kids in the past three days . . .
Nathaniel, gluing together a manger scene made of foam "marshmallows." (Yes, really!) He got to the part of attaching the ribbon to hold Mary's headdress. "Mom, can you hold this for me? I had a really hard time with Joseph's ribbon." The result was suitably lovely for an 8 year old who makes magic with a glue gun.
Apologizing to Lucy after yelling at her on Dec. 22, when I was still in my grief. "Lucy, I know I'm in a bad mood, and I want you to know that it's not anything you or your brother have done. I'm just feeling really sad about my illness. I know that I am feeling physically good now, and able to do most things, but I'm still sick, and it makes me sad." She nodded, and went on with her computer game.
Later, though, she came in to the kitchen and asked if she could bake cookies with me. I was mixing dough for scottish shortbread - done by hand - and she said, "Can I do that?" with a gleam in her eye. I said sure, and she mixed her own batch, hands in the dough, and all. I told her that the story in Scotland (as I have heard it) is that each woman's shortbread tastes somewhat different, because she has kneaded and worked the dough herself, with her hands.
At bedtime, walking upstairs, she said "Baking cookies today was fun." I replied, "I thought so, too."
At the Christmas Eve service last night, both the kids were back lit by the white lights of the Christmas tree, which formed halos around their beautiful heads.
Lucy sang a solo last night, "Who Would Imagine," and did a wonderful job. The whole service was full of music, with the choir singing five different songs, and all of us singing lots of Christmas carols. The service was full of the magic of Christmas, and I felt touched by grace.
Today the kids first got up at 2:30, but were convinced they needed to get back to sleep, and slept then until 6:00. From upstairs, I heard Nathaniel say to Lucy, "See, Lucy, I told you Santa was real. I asked him for socks, and he brought them!" ( I cannot explain the comment, but I'm still laughing. We think this was a request to Santa whispered under his breath.)
The kids were understandably wired during the morning, and we had laughter, screams of delight, and lots of fun opening gifts. Over the day, we saw our extended family, ate well, and celebrated Christmas. Sweet memories, a wonderful celebration.
Friday, December 22, 2006
Today, I Don't Want to Know
Warning: This is not a warm and fuzzy holiday posting, but rather a grim and sad one. So, don't read on just now if you are not in the mood.
Today, I don't want to know that I have been diagnosed with terminal cancer. I began this blog last August by saying:
If you had only six months or a year to live, would you want to know? What would you do with the information? Would it make a difference in how you lived your life?
My answer then, and in the days since I framed the question, has been "Yes. I would want to know, I'm glad I do know." As the months have unfolded and I have felt well, returned to work, not gotten quickly and intensely ill, continued to recover from the major surgery of last May, and had other experiences, the immediacy of my diagnosis has somewhat faded. And while all of this has happened, I haven't had a day when I thought that I wouldn't want to know. I've seen it all as an opportunity to live more fully, and to be in the moment, savoring the life I have.
Today, however, I wish I didn't know. Suddenly, with Christmas three days away, I just don't want to be thinking that this could be my last Christmas, and have that added weight to the holidays. I loved Christmas as a child, and there is much about it that I continue to love. But with the passing of years, it has come to carry a lot of emotional baggage. To that baggage, I really don't want to add an awareness of my mortality, thank you very much.
Two weekends ago, I baked cookies for two days with good friends who came to roll, and dust, and shape the cookies I like to make just for Christmas. And in baking, we talked, sometimes about heavy and serious things, sometimes about light and fun things. One conversation, with my friend Judy, who is a United Church of Christ minister like Patty, was about the difference between getting a terminal diagnosis (like gallbladder cancer) and getting a serious diagnosis (like a cancer that's more treatable and has a good success rate from treatment). I don't want to be comparing degrees of "badness" for respective diagnoses with anyone, but I can feel the difference of a diagnosis that one expects to recover from, and one where nothing short of a miracle would prolong one's life. (That's me, and I am definitely in the market for one of those miracles.) And perhaps I can most accurately say that I know I would feel different if diagnosed with a treatable illness. The terminal diagnosis makes me wonder if I will be here next Christmas, or, if I am alive, I'll be well enough to bake cookies again for a weekend.
I wish I didn't have cancer. I wish it weren't gallbladder cancer, with its poor prognosis. I wish I could get treated and expect to go on living my life. I wish I didn't know that the cancer is in my body, and that this could just be my last Christmas. I wish I could just enjoy the anticipation and laughter of my children as Christmas approaches, and not worry about next year. Today, I don't want to know.
Today, I don't want to know that I have been diagnosed with terminal cancer. I began this blog last August by saying:
If you had only six months or a year to live, would you want to know? What would you do with the information? Would it make a difference in how you lived your life?
My answer then, and in the days since I framed the question, has been "Yes. I would want to know, I'm glad I do know." As the months have unfolded and I have felt well, returned to work, not gotten quickly and intensely ill, continued to recover from the major surgery of last May, and had other experiences, the immediacy of my diagnosis has somewhat faded. And while all of this has happened, I haven't had a day when I thought that I wouldn't want to know. I've seen it all as an opportunity to live more fully, and to be in the moment, savoring the life I have.
Today, however, I wish I didn't know. Suddenly, with Christmas three days away, I just don't want to be thinking that this could be my last Christmas, and have that added weight to the holidays. I loved Christmas as a child, and there is much about it that I continue to love. But with the passing of years, it has come to carry a lot of emotional baggage. To that baggage, I really don't want to add an awareness of my mortality, thank you very much.
Two weekends ago, I baked cookies for two days with good friends who came to roll, and dust, and shape the cookies I like to make just for Christmas. And in baking, we talked, sometimes about heavy and serious things, sometimes about light and fun things. One conversation, with my friend Judy, who is a United Church of Christ minister like Patty, was about the difference between getting a terminal diagnosis (like gallbladder cancer) and getting a serious diagnosis (like a cancer that's more treatable and has a good success rate from treatment). I don't want to be comparing degrees of "badness" for respective diagnoses with anyone, but I can feel the difference of a diagnosis that one expects to recover from, and one where nothing short of a miracle would prolong one's life. (That's me, and I am definitely in the market for one of those miracles.) And perhaps I can most accurately say that I know I would feel different if diagnosed with a treatable illness. The terminal diagnosis makes me wonder if I will be here next Christmas, or, if I am alive, I'll be well enough to bake cookies again for a weekend.
I wish I didn't have cancer. I wish it weren't gallbladder cancer, with its poor prognosis. I wish I could get treated and expect to go on living my life. I wish I didn't know that the cancer is in my body, and that this could just be my last Christmas. I wish I could just enjoy the anticipation and laughter of my children as Christmas approaches, and not worry about next year. Today, I don't want to know.
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