Where to begin? It's been quite a week in the medical department, and I haven't posted because I wanted to have something more concrete to say.
It started Tuesday, when Patty called Dr J, the oncologist's, office to see about my latest CA 19-9 numbers; they always take a few days more than the other bloodwork. So, here's the bad news; my numbers had tripled! From around 768 on March 6, my numbers had climbed to 2,099. Ouch! So, we were worried, and the doctor was concerned about getting a fuller picture. He and I hadn't met face to face since February, and he wanted me to come into the office this week. I made an appointment for this morning, and his nurse, Sue, also let us know that they would cancel the port appointment until we had a plan for moving ahead.
We met with Dr J this morning, and I told him I'd done okay since the infusion last week. My biggest complaints are still lack of appetite, nausea, fatigue, and this week, constipation. The implant - spot - in my side has been sore, and feels bigger and harder, which is really, really worrisome. If that tumor is growing, what's happening inside? As we talked about my side effects, and our vacation, Dr. J commented that I'm very positive about everything . . . He also said that he's concerned that the current chemo regimen is not working. (I share that concern.)
He presented us with a few options. The first was to try a pill that's a biologic agent, called sorafanib. Some folks get good results, but it can take a few weeks to kick in. The second was to shift chemo drugs to a combination of gemcitabine (Gemzar) and cisplatin. They are both delivered by infusion, so no pills. There have been more studies of these two drugs with
gallbladder cancer, and some folks have had good response to them. The third option was a less aggressive chemo drug, taxotere.
Because I've been concerned about the tumor growing, I wanted to go for the most aggressive treatment, which is the two-drug chemo combination. So, we're going to do an infusion next Wednesday (both drugs), and then again the following week (just cisplatin), then a week off. Somewhere in there, I'll have the port put in, since the Gemzar is difficult for veins to tolerate. I just have to wait to get a new appointment. Have I mentioned that I am powerfully tired of doctor and hospital visits?
My head is spinning a bit tonight with the intensity and all of the changes in plan over the last few days, but the new treatment feels right. I don't want to give either of the tumors any more time to grow than they've already had! Thanks for your continued prayers, good wishes, and, from some of you close by, soup deliveries! It means so much to feel that ongoing support and love as we continue this cancer ride.
Friday, March 30, 2007
Tuesday, March 27, 2007
Ten Months and Still Here! The Winter Tumor.
This past Saturday, March 24, marked ten months since the major surgery that revealed that I have gallbladder cancer. The diagnosis sounded like a death sentence . . . rare, incurable cancer . . . many folks live only two to six months post diagnosis . . . we don't know how your disease will progress . . . stage IV cancer, with "distant" metastasis . . . if you take this trip to the southwest you need to watch out for a recurrence of jaundice, for other evidence of spread of the disease and seek treatment immediately . . . yes, it would be a good idea to know where the closest hospital is as you travel . . .
Those were some of the conversations we had with my medical providers. Ultimately, they didn't tell us not to take the trip, and they didn't give us any compelling reasons why we should stay home. I couldn't begin chemo for at least a month following the surgery, so we were only potentially delaying beginning treatment by two weeks. Then, surprise! We returned from our trip, I had no signs of jaundice, was clearly recovering well from the surgery, and the CT scan showed no progression of disease. That was the beginning of what proved to be 8 months of being asymptomatic (except for that pesky spot in my abdomen that was removed surgically in December, and was an implant, grown from cells accidentally deposited as they removed my cancerous gallbladder).
And now I know, and know of, folks who are 18 month post diagnosis and doing well, and folks with even more time who continue to fight the cholangiocarcinoma, and to experience a good quality of life. As spring begins to stir here in Massachusetts, I find my desire to fight the disease is strengthened. Why not order those bulbs to plant in the yard in May and watch them bloom over the summer? Why not expect to be here in a year to watch yet another spring arrive? (Well, writing "expect" reminds me of the warning to have "abundant expectancy, but not expectations;" see my post of December 11) But why not have hope and imagination and faith in my body's ongoing ability to fight this disease?
Last summer when I was first diagnosed, my friend Bev was the one who said to me, tearfully, "You need another spring, you deserve another spring." This can't be happening, and the disease can't take you that fast, was the heart of her point. She and I both love to garden, and sharing our growing stories and cuttings and plants has been a special joy in our relationship. I knew what she meant. With the coming of this spring, I feel a renewal of that determination.
With the arrival of spring, I also feel I'm beginning to emerge from the "shell shock" of the sudden appearance of this dangerous tumor in my abdomen, visible in January's scan. I thought after 8 months that anything growing would be a little slower to be dangerous, yet this came on like gangbusters, threatening the functioning of vital organs, and, honestly, scaring me to death. It was a winter tumor, and it should vanish now that spring is here!
Something Leroy wrote in his blog before we left on vacation has really stuck with me, and seemed to articulate some of the changes I've experienced internally since the initial panic and anxiety about my life threatening diagnosis. On March 8, this is what Leroy had to say:
"I still stand by what I said earlier. I'm not ready to die. At the same time, when my cancer came at me again, I did finally come to peace with the process. After all, I feel that I have lived a decent life. But there is a big difference between coming to grips with your own death and giving up on life. I don't think any of us ever give up. Even when the time may come that we choose to end treatment, that's not giving up. That's making a choice."
"A big difference between coming to grips with your own death and giving up on life." Those were words I needed to hear last summer when I was dealing with the intensity of my diagnosis. So, I'm grateful to Leroy for saying the words I still needed to hear, for putting words on my experience. I feel that these last months have been about coming to grips with my own death, recognizing that it's likely to come sooner than I ever expected, while still not giving up on life. There's so much I want to do, and see, and write, and be, before my life comes to an end.
Let's hope that this winter tumor shrinks in the face of the chemo, and gives me even more time than I could have imagined last summer.
Those were some of the conversations we had with my medical providers. Ultimately, they didn't tell us not to take the trip, and they didn't give us any compelling reasons why we should stay home. I couldn't begin chemo for at least a month following the surgery, so we were only potentially delaying beginning treatment by two weeks. Then, surprise! We returned from our trip, I had no signs of jaundice, was clearly recovering well from the surgery, and the CT scan showed no progression of disease. That was the beginning of what proved to be 8 months of being asymptomatic (except for that pesky spot in my abdomen that was removed surgically in December, and was an implant, grown from cells accidentally deposited as they removed my cancerous gallbladder).
And now I know, and know of, folks who are 18 month post diagnosis and doing well, and folks with even more time who continue to fight the cholangiocarcinoma, and to experience a good quality of life. As spring begins to stir here in Massachusetts, I find my desire to fight the disease is strengthened. Why not order those bulbs to plant in the yard in May and watch them bloom over the summer? Why not expect to be here in a year to watch yet another spring arrive? (Well, writing "expect" reminds me of the warning to have "abundant expectancy, but not expectations;" see my post of December 11) But why not have hope and imagination and faith in my body's ongoing ability to fight this disease?
Last summer when I was first diagnosed, my friend Bev was the one who said to me, tearfully, "You need another spring, you deserve another spring." This can't be happening, and the disease can't take you that fast, was the heart of her point. She and I both love to garden, and sharing our growing stories and cuttings and plants has been a special joy in our relationship. I knew what she meant. With the coming of this spring, I feel a renewal of that determination.
With the arrival of spring, I also feel I'm beginning to emerge from the "shell shock" of the sudden appearance of this dangerous tumor in my abdomen, visible in January's scan. I thought after 8 months that anything growing would be a little slower to be dangerous, yet this came on like gangbusters, threatening the functioning of vital organs, and, honestly, scaring me to death. It was a winter tumor, and it should vanish now that spring is here!
Something Leroy wrote in his blog before we left on vacation has really stuck with me, and seemed to articulate some of the changes I've experienced internally since the initial panic and anxiety about my life threatening diagnosis. On March 8, this is what Leroy had to say:
"I still stand by what I said earlier. I'm not ready to die. At the same time, when my cancer came at me again, I did finally come to peace with the process. After all, I feel that I have lived a decent life. But there is a big difference between coming to grips with your own death and giving up on life. I don't think any of us ever give up. Even when the time may come that we choose to end treatment, that's not giving up. That's making a choice."
"A big difference between coming to grips with your own death and giving up on life." Those were words I needed to hear last summer when I was dealing with the intensity of my diagnosis. So, I'm grateful to Leroy for saying the words I still needed to hear, for putting words on my experience. I feel that these last months have been about coming to grips with my own death, recognizing that it's likely to come sooner than I ever expected, while still not giving up on life. There's so much I want to do, and see, and write, and be, before my life comes to an end.
Let's hope that this winter tumor shrinks in the face of the chemo, and gives me even more time than I could have imagined last summer.
Sunday, March 25, 2007
Peace Prayer of St. Francis of Assisi
Since my diagnosis of gallbladder cancer, I have found that I have been drawn to the prayer commonly known as the Peace Prayer of St. Francis of Assisi. While he was born in 1182, the prayer itself didn't appear in printed form until 1912, so it seems likely he didn't author it. Still, it has such a powerful message, I'm not surprised that it is so popular. Here's the prayer:
Lord, make me an instrument of your peace,
Where there is hatred, let me sow love;
where there is injury, pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
where there is sadness, joy;
O Divine Master, grant that I may not so much seek to be consoled as to console;
to be understood as to understand;
to be loved as to love.
For it is in giving that we receive;
it is in pardoning that we are pardoned;
and it is in dying that we are born to eternal life.
I so appreciate how the words turn around our normal expectations about the way to live and be happy, and to thrive. We can think that the meaning of life, having a full life, is all about us and getting what we want and believe we need, when often life is most deeply about reaching past ourselves to see how we all are connected and need each other. The words feel very healing to me.
Brugh Joy, in a workshop I attended, told a story about St. Francis that spoke deeply to me. Francis was born to wealth, and, while he wasn't always happy to be wealthy, he avoided unpleasant situations and people for much of his young life. But God was speaking to him, and at some point, he realized that he needed to do what he most feared. Brugh saw this as an example of a person challenging his shadow, that disowned part of ourselves, by doing the thing we most fear, by facing the thing that most challenges us. So, the story goes, Francis sought out a leper, whom he feared, knowing that the disease was highly contagious, and he put his hand into the wounds of the leper. In doing so, he faced his deepest fear and found himself transformed. After that, he was not the same man. Brugh used this story to illustrate how we can be transformed by facing our fears and doing the thing we fear the most. While I have no illusions that I'm like St. Francis, dealing with cancer, having a life threatening diagnosis, and being faced very powerfully with my mortality has certainly required me to face some of my deepest fears. And I'm still struggling with all of it . . .
For Christmas last year, I asked Patty to give me a mobius bracelet of the St. Francis Prayer. (A mobius bracelet has no beginning and no end, because a twist in the metal keeps the circle - and the words - going; see illustration at top of this post.) I had discovered them for sale on Healing Baskets, a website that sells custom made baskets for folks who are sick, including those with cancer. My friend Mary sent me a basket last summer, and it was filled with special wonderful items to heal and soothe and support (bath salts, a pad to warm in the microwave, ginger candy, and so on), and when I ordered a basket for a friend last fall, I discovered the mobius bracelet with the St. Francis Prayer. I like silver anyway, and the silver bracelet is just $75.00. So Patty gave it to me, and I've worn it most of the time since Christmas (except when we were in St. John, because I didn't want to worry about losing it).
Wearing the bracelet, having the first part of the prayer there and available to read through and meditate on is a wonderful soothing exercise. I love the prayer, I love my bracelet, and when my illness has me really down and worried, I feel better remembering the prayer.
Lord, make me an instrument of your peace,
Where there is hatred, let me sow love;
where there is injury, pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
where there is sadness, joy;
O Divine Master, grant that I may not so much seek to be consoled as to console;
to be understood as to understand;
to be loved as to love.
For it is in giving that we receive;
it is in pardoning that we are pardoned;
and it is in dying that we are born to eternal life.
I so appreciate how the words turn around our normal expectations about the way to live and be happy, and to thrive. We can think that the meaning of life, having a full life, is all about us and getting what we want and believe we need, when often life is most deeply about reaching past ourselves to see how we all are connected and need each other. The words feel very healing to me.
Brugh Joy, in a workshop I attended, told a story about St. Francis that spoke deeply to me. Francis was born to wealth, and, while he wasn't always happy to be wealthy, he avoided unpleasant situations and people for much of his young life. But God was speaking to him, and at some point, he realized that he needed to do what he most feared. Brugh saw this as an example of a person challenging his shadow, that disowned part of ourselves, by doing the thing we most fear, by facing the thing that most challenges us. So, the story goes, Francis sought out a leper, whom he feared, knowing that the disease was highly contagious, and he put his hand into the wounds of the leper. In doing so, he faced his deepest fear and found himself transformed. After that, he was not the same man. Brugh used this story to illustrate how we can be transformed by facing our fears and doing the thing we fear the most. While I have no illusions that I'm like St. Francis, dealing with cancer, having a life threatening diagnosis, and being faced very powerfully with my mortality has certainly required me to face some of my deepest fears. And I'm still struggling with all of it . . .
For Christmas last year, I asked Patty to give me a mobius bracelet of the St. Francis Prayer. (A mobius bracelet has no beginning and no end, because a twist in the metal keeps the circle - and the words - going; see illustration at top of this post.) I had discovered them for sale on Healing Baskets, a website that sells custom made baskets for folks who are sick, including those with cancer. My friend Mary sent me a basket last summer, and it was filled with special wonderful items to heal and soothe and support (bath salts, a pad to warm in the microwave, ginger candy, and so on), and when I ordered a basket for a friend last fall, I discovered the mobius bracelet with the St. Francis Prayer. I like silver anyway, and the silver bracelet is just $75.00. So Patty gave it to me, and I've worn it most of the time since Christmas (except when we were in St. John, because I didn't want to worry about losing it).
Wearing the bracelet, having the first part of the prayer there and available to read through and meditate on is a wonderful soothing exercise. I love the prayer, I love my bracelet, and when my illness has me really down and worried, I feel better remembering the prayer.
Saturday, March 24, 2007
Day Two of New Chemo Cycle
I'm doing much better so far with this chemo cycle, and felt much better yesterday following the oxaliplatin infusion yesterday, and beginning the two weeks of Xeloda tablets.
The chemo nurse, Linda, sensed my anxiety when I arrived, and we talked about what happened last time, my worries that I would leave again feeling so awful I could barely walk, and my concerns about the lingering side effects. Dr. J, the oncologist, called from Wyoming, where he was lecturing to medical students, and updated me on the details of the changes in my chemo regimen. He ordered a calcium/magnesium infusion before and after the oxaliplatin, because it seems to offset the impact of the drug on nerves (neuropathy), and that did seem to make a big difference yesterday. He also reduced the oxaliplatin dose by 20%, and the Xeloda dose by 33%, so I'll be having a bit less of both chemos through this cycle.
When I left, my legs weren't hurting, as they were last time, and I didn't have numbness in the back of my throat. And today I don't have as strong a sense of my body just being completely out of whack as I did. I did still have trouble with pain in my arm when the infusion was about 3/4 complete, so I asked Linda to stop it. So, we stopped using the one arm and went to the other, and went to a larger vein in my arm, near my elbow for the end of the infusion. Linda was upset because she thinks that the oxaliplatin is just too tough for arm veins to tolerate, and that they should establish a policy that everyone receiving the drug has a port.
Anyway, after going to a second vein yesterday and having everything slowed down as a result, I'm ready for a port. Linda must have ordered it right away, because I got a phone call from the "line coordinator" soon after I got home, and I have an appointment to have it inserted on Monday, April 2, with my appointment beginning at 6:00 in the morning (Yeow!). Since I don't want to do another infusion without a port, I'm glad we have a plan. The port is inserted surgically in the chest below the collarbone, and provides easy access for the chemo infusion. And because this is a larger vein, the soreness with arm infusions just isn't an issue.
I also had a good conversation with Linda about my problems eating and my lack of appetite. After talking with her, I feel as if my problems have been normalized. Lots of people with various forms of chemo have lack of appetite, food tasting funny, decreasing appetite as the day progresses, and other odd things about eating, it seems. We talked about drinking as much as I can so as not to get dehydrated, about eating frequently, expecting to be able to eat less at a time than I used to, and just dealing with what is but eating as much as I can. I've lost 15 pounds or so in the last two months (some of it due to the stomach virus), and Linda said I need to stop losing weight and regain at least some of it. So, I feel normalized in my experience and challenged to keep getting more nutrition into me. She also gave me a book with recipes especially attractive to and useful for patients on chemo. It has lots of soup recipes, which I'll have to try when I have energy. I've been realizing that liquid food like soup tastes especially good to me.
On the subject of losing weight, I had something very funny happen to me while teaching on Thursday. I was wearing a pair of my favorite stretch corduroy pants, which are very comfortable, and I'd walked from the train station to my office without incident. However, when I was teaching, talking, and raising my arms to write a lot on the board, I began to realize that my pants were beginning to fall down. I slipped behind the big media center and hiked them up, and then found I had to do that repeatedly. Fortunately, they didn't end up around my ankles, which would have been beyond embarrassing, but it was a struggle to focus on my lecture, answer student questions, and keep up my too-loose pants!
So, that's my medical update and my medical state for today. It's a relief to feel more normal than I did last time.
This week was hard, with a need to focus intensely on work before I felt rested from traveling, and with my anticipatory anxiety about yesterday's chemo. So, I'm glad to be on the other side of all of that, able to nap today and tomorrow, and ready to get back into the rhythm of our daily routines. My continuing thanks to all of you who read this and follow my journey, and who post your words of love, support, and humor!
The chemo nurse, Linda, sensed my anxiety when I arrived, and we talked about what happened last time, my worries that I would leave again feeling so awful I could barely walk, and my concerns about the lingering side effects. Dr. J, the oncologist, called from Wyoming, where he was lecturing to medical students, and updated me on the details of the changes in my chemo regimen. He ordered a calcium/magnesium infusion before and after the oxaliplatin, because it seems to offset the impact of the drug on nerves (neuropathy), and that did seem to make a big difference yesterday. He also reduced the oxaliplatin dose by 20%, and the Xeloda dose by 33%, so I'll be having a bit less of both chemos through this cycle.
When I left, my legs weren't hurting, as they were last time, and I didn't have numbness in the back of my throat. And today I don't have as strong a sense of my body just being completely out of whack as I did. I did still have trouble with pain in my arm when the infusion was about 3/4 complete, so I asked Linda to stop it. So, we stopped using the one arm and went to the other, and went to a larger vein in my arm, near my elbow for the end of the infusion. Linda was upset because she thinks that the oxaliplatin is just too tough for arm veins to tolerate, and that they should establish a policy that everyone receiving the drug has a port.
Anyway, after going to a second vein yesterday and having everything slowed down as a result, I'm ready for a port. Linda must have ordered it right away, because I got a phone call from the "line coordinator" soon after I got home, and I have an appointment to have it inserted on Monday, April 2, with my appointment beginning at 6:00 in the morning (Yeow!). Since I don't want to do another infusion without a port, I'm glad we have a plan. The port is inserted surgically in the chest below the collarbone, and provides easy access for the chemo infusion. And because this is a larger vein, the soreness with arm infusions just isn't an issue.
I also had a good conversation with Linda about my problems eating and my lack of appetite. After talking with her, I feel as if my problems have been normalized. Lots of people with various forms of chemo have lack of appetite, food tasting funny, decreasing appetite as the day progresses, and other odd things about eating, it seems. We talked about drinking as much as I can so as not to get dehydrated, about eating frequently, expecting to be able to eat less at a time than I used to, and just dealing with what is but eating as much as I can. I've lost 15 pounds or so in the last two months (some of it due to the stomach virus), and Linda said I need to stop losing weight and regain at least some of it. So, I feel normalized in my experience and challenged to keep getting more nutrition into me. She also gave me a book with recipes especially attractive to and useful for patients on chemo. It has lots of soup recipes, which I'll have to try when I have energy. I've been realizing that liquid food like soup tastes especially good to me.
On the subject of losing weight, I had something very funny happen to me while teaching on Thursday. I was wearing a pair of my favorite stretch corduroy pants, which are very comfortable, and I'd walked from the train station to my office without incident. However, when I was teaching, talking, and raising my arms to write a lot on the board, I began to realize that my pants were beginning to fall down. I slipped behind the big media center and hiked them up, and then found I had to do that repeatedly. Fortunately, they didn't end up around my ankles, which would have been beyond embarrassing, but it was a struggle to focus on my lecture, answer student questions, and keep up my too-loose pants!
So, that's my medical update and my medical state for today. It's a relief to feel more normal than I did last time.
This week was hard, with a need to focus intensely on work before I felt rested from traveling, and with my anticipatory anxiety about yesterday's chemo. So, I'm glad to be on the other side of all of that, able to nap today and tomorrow, and ready to get back into the rhythm of our daily routines. My continuing thanks to all of you who read this and follow my journey, and who post your words of love, support, and humor!
Wednesday, March 21, 2007
Home
We've been home since late Monday night (a day and a half ago), and Patty and I are back at work, and the kids back at school. Our trip was wonderful, and so relaxing that I didn't even compose any blog entries in my mind! Things have been busy since our return, with unpacking and work, so I've been waiting for inspiration on posting. What a delight it was to return and read all of the comments after my last post before we left. I felt well supported and prayed for! I haven't downloaded any pictures from our vacation, but should have some ready by my next post.
While we were away, we swam, snorkeled, sat (or played) on the beach, and generally relaxed. It was wonderful to be away, and to put down all of the details of daily life. Since we were camping, we went to bed early, and read for a while in our tent, and got up with the sun in the morning.
Since we were camping, we had a few camping challenges. The sand fleas and mosquitoes really LOVED Nathaniel and Lucy, and we had some nights with lots of complaining about itchiness and trouble sleeping. We finally figured out how to spray the insect repellent around the tent, tie all of the little ribbons (no zippers in this tent!), and minimize the bugs. And, we had a resident lizard in our tent. We kept encouraging it to eat lots of fleas and mosquitoes, but it had trouble keeping up with the volume.
The beauty of camping at Cinnamon Bay Campground in St. John, USVI, is that the beach was just minutes from our tent. We could roll out of bed and check the water, go for an early swim, stake out some shady territory on the beach, and go back to our site for breakfast. We visited some other beaches and did some hiking, but the kids like staying put once they had made friends, and so we stayed close to the tent many days.
How have I been feeling? Not as good as I would like. I still feel side effects from the oxaliplatin, especially cold sensitivity (but not to cold foods). The warm Caribbean water gave me goose bumps, but fortunately, we had bought a wet suit for me, so I could snorkel without freezing. When I took my cold shower (they don't heat the water at the campground), I was the only one yelping through the cold water as I quickly showered. And the appetite thing really has not improved. My appetite is best in the morning, and diminishes as the day progress. Some days, I can't eat any dinner, although I did discover that baked potatoes sit well. I thought my appetite would return this long after my last infusion, and I could regain some of the weight I've lost. One fun thing about being in the Caribbean is that it was easy to buy Ginger Beer (non-alcoholic), which was zingy and gingery, and tastes like the ginger drink that Tia described how to make in a comment a few posts back. Yummy!
This Friday, I go for my next infusion, and I've had conversations with the oncology nurse, and others about the side effects I'm still feeling. I just hope that means the chemo drugs are still working against the tumors, and that the tumors have not taken advantage of this vacation to grow!
So, pictures and more information soon. For now, back to work!
While we were away, we swam, snorkeled, sat (or played) on the beach, and generally relaxed. It was wonderful to be away, and to put down all of the details of daily life. Since we were camping, we went to bed early, and read for a while in our tent, and got up with the sun in the morning.
Since we were camping, we had a few camping challenges. The sand fleas and mosquitoes really LOVED Nathaniel and Lucy, and we had some nights with lots of complaining about itchiness and trouble sleeping. We finally figured out how to spray the insect repellent around the tent, tie all of the little ribbons (no zippers in this tent!), and minimize the bugs. And, we had a resident lizard in our tent. We kept encouraging it to eat lots of fleas and mosquitoes, but it had trouble keeping up with the volume.
The beauty of camping at Cinnamon Bay Campground in St. John, USVI, is that the beach was just minutes from our tent. We could roll out of bed and check the water, go for an early swim, stake out some shady territory on the beach, and go back to our site for breakfast. We visited some other beaches and did some hiking, but the kids like staying put once they had made friends, and so we stayed close to the tent many days.
How have I been feeling? Not as good as I would like. I still feel side effects from the oxaliplatin, especially cold sensitivity (but not to cold foods). The warm Caribbean water gave me goose bumps, but fortunately, we had bought a wet suit for me, so I could snorkel without freezing. When I took my cold shower (they don't heat the water at the campground), I was the only one yelping through the cold water as I quickly showered. And the appetite thing really has not improved. My appetite is best in the morning, and diminishes as the day progress. Some days, I can't eat any dinner, although I did discover that baked potatoes sit well. I thought my appetite would return this long after my last infusion, and I could regain some of the weight I've lost. One fun thing about being in the Caribbean is that it was easy to buy Ginger Beer (non-alcoholic), which was zingy and gingery, and tastes like the ginger drink that Tia described how to make in a comment a few posts back. Yummy!
This Friday, I go for my next infusion, and I've had conversations with the oncology nurse, and others about the side effects I'm still feeling. I just hope that means the chemo drugs are still working against the tumors, and that the tumors have not taken advantage of this vacation to grow!
So, pictures and more information soon. For now, back to work!
Thursday, March 08, 2007
I Didn't Know I was Worried . . .
This really is my last post before we depart for vacation. Honest!
I finally talked with my doctors today, and after talking with the urologist, Dr. D, I realized I was worried about the stent keeping things flowing between my kidney and bladder. Yes, Dr. M told me Monday that the kidney looked better, and I thought the kidney looked better, but it still didn't look normal, and I knew from the urologist that if this stent didn't work, the next step would be more drastic. They would create a stent in my back into the kidney, and the urine would drain into a bag, completely bypassing the ureter and bladder (for that kidney, but not the other one). I really don't want that kind of stent! I would do it if it meant keeping the kidney, but I really don't want it . . . It's not as if this stent is great. Sometimes I feel it, and it's uncomfortable. But if it's working, that's good.
So, when Dr. D looked at the scan today and said the kidney looked better, despite the failure of the urine to drain completely, I was relieved. He also said that when the stent is replaced (which they plan to do each three months), he could put one in with a slightly larger diameter, to help drainage. He had a plan, he wasn't worried, and I was relieved.
Later today, I talked with the oncologist, Dr. J. He listened to my story of side effects, and proposed that we cut the dose of both of the chemo drugs. He suggested we try that before going with a port. "Why have the additional procedure if you don't need it, and the lower dose gives you fewer side effects?" he asked. I had to agree that fewer procedures sounded good. So, a lower dose of the oxaliplatin to help with the exhaustion, funny numbness in the back of my throat, and tight muscles in my calves that I experienced last time. A lower dose of the Xeloda to help avoid hand-foot syndrome. I'll go for my next chemo treatment on the Friday after we get back.
For now, I'm on a chemo holiday, and feeling more like myself with each day that passes. Yea! You all have wished me bon voyage, and have a great trip many times over, and I appreciate that. I did think, while meditating this morning, that I also wanted to ask for continued prayers and healing energy. Please don't stop! I feel the support, and the prayers, and the positive energy, and it sustains and nourishes me when things are tough.
That's it for now!
I finally talked with my doctors today, and after talking with the urologist, Dr. D, I realized I was worried about the stent keeping things flowing between my kidney and bladder. Yes, Dr. M told me Monday that the kidney looked better, and I thought the kidney looked better, but it still didn't look normal, and I knew from the urologist that if this stent didn't work, the next step would be more drastic. They would create a stent in my back into the kidney, and the urine would drain into a bag, completely bypassing the ureter and bladder (for that kidney, but not the other one). I really don't want that kind of stent! I would do it if it meant keeping the kidney, but I really don't want it . . . It's not as if this stent is great. Sometimes I feel it, and it's uncomfortable. But if it's working, that's good.
So, when Dr. D looked at the scan today and said the kidney looked better, despite the failure of the urine to drain completely, I was relieved. He also said that when the stent is replaced (which they plan to do each three months), he could put one in with a slightly larger diameter, to help drainage. He had a plan, he wasn't worried, and I was relieved.
Later today, I talked with the oncologist, Dr. J. He listened to my story of side effects, and proposed that we cut the dose of both of the chemo drugs. He suggested we try that before going with a port. "Why have the additional procedure if you don't need it, and the lower dose gives you fewer side effects?" he asked. I had to agree that fewer procedures sounded good. So, a lower dose of the oxaliplatin to help with the exhaustion, funny numbness in the back of my throat, and tight muscles in my calves that I experienced last time. A lower dose of the Xeloda to help avoid hand-foot syndrome. I'll go for my next chemo treatment on the Friday after we get back.
For now, I'm on a chemo holiday, and feeling more like myself with each day that passes. Yea! You all have wished me bon voyage, and have a great trip many times over, and I appreciate that. I did think, while meditating this morning, that I also wanted to ask for continued prayers and healing energy. Please don't stop! I feel the support, and the prayers, and the positive energy, and it sustains and nourishes me when things are tough.
That's it for now!
Wednesday, March 07, 2007
In The Chemo Room
I have been drafting this post since my last chemotherapy, almost three weeks ago. Before I head off for this much-anticipated vacation, I figure I should post it. When we return, I'll be anticipating another round of chemo, and the information will likely change. So, for those of you wondering if I haven't left yet, the answer is "not yet," but in two days. And thanks for all of the warm wishes and good thoughts following my last post.
Some of you reading this blog know more about receiving chemo treatments than I do, but lots of you who know me have asked me questions about receiving chemo, what it's like, what happens, what the two different chemos are like, etc. So, I thought I would share a few of the details I've observed and experience in my two rounds. Those of you who have been there, feel free to comment on your own experiences!
In addition, I'm remembering that Leroy (of Leroy's blog at NPR) was interviewed and filmed in the chemo room for a special scheduled to appear this spring on TV. Last December, he had a fellow journalist write in his blog about her observations in the Chemo Room, and those are worth reading if you have no prior experience. The documentary will be on Discovery Channel, and whenever it will be, I should get a heads-up from Leroy's blog, and I can mention its air date when I learn of it.
The Chemo Room at Beth Israel Deaconness, where I go for chemo, is a great big room with a nurse's station in the center, and chairs that can recline all around the outside wall. Most of the chairs can be curtained off, if need be, although I haven't felt the need, and so I've been able to observe lots of other folks receiving their chemo treatment who are also not behind curtains. As Elissa Rubin, the journalist mentioned above, notes, folks are dressed in street clothes. I would guess the only reason to be in a hospital jonny would be because you were already admitted to the hospital. Some folks even dress up for the trip to this hospital, reminding me of my favorite aunt, Win, who still loved to dress up and wear a stylish hat when flying on airplanes before she died early in this decade.
The session starts with checking in with the chemo nurse, Linda, and possibly the oncology nurse, Sue, who may come by. This last time I talked with Linda about slowing things down from the first session (where the infusion took about 2 hours), and she agreed. She put the IV in, and gave me decadron IV (anti-nausea med), then benadryl (because I'd had a hive during the first session), and she brings me a pill of anti-nausea med, whose name we can't remember. When it's time to actually begin the infusion of oxaliplatin, the chemo nurse and one other person come together to confirm the dose and medication and that I'm the patient it's designed for. This last session, they did slow down the infusion, and I think it took more like 3 hours. But I think it was still too fast, given how I felt after. But I get ahead of myself.
Patty and I bring along a bag of snacks and things to do, but there are also volunteers coming around offering food. Does that seem strange, that someone would eat during chemo? I thought so, at first, but then found that snacks and a lunch tasted pretty good during the time I was sitting there (having already been pumped with anti-nausea meds). After lunch, they came by offering ice cream, and I remembered readily that eating ice cream would not be a good idea, so both Patty and I declined. I find that I like listening to music with my iPod, sometimes I'll pick up a good book (if i have one), sometimes Patty and I will chat, especially at the beginning. And I watch people, the others in the chemo room with me.
On my last visit to the chemo room, there was one man who seemed to be dozing through his infusion (I was envious - Does that make it go faster?), one woman who came in to receive platelets (they were very yellow, and Patty could read the bag), and another woman who received transfusions, two, of blood, while she was there (the blood was easy to spot from across the room, with the big "O" on the bag). Sitting next to me was a man receiving oxaliplatin also, plus one or two other drugs. He looked like an old hand at this, and had a port in his chest for the infusion. (A port is inserted as day surgery, separate from the chemo, and means that when something needs to be inserted (chemo drugs) or withdrawn (blood), a new IV doesn't need to be started in the arms or hands. Apparently a lot of folks have trouble with their veins, and I have also heard that the port can ease the infusion. Since I had a rough round with infusion #2, I will be learning more about that.)
So what happened during the second infusion? I guess it was just too much, too fast, and somehow my body couldn't tolerate it well. I've already written about how I came home and spent the rest of the day in bed, and also about talking with Sue last week about the possibility of doing some things to make it easier next time.
I still haven't touched base with the oncologist about the next infusion and whether or not to do a port (I'm leaning toward yes), and with the urologist about the stent. But my CT scan pictures did arrive by FedEx yesterday, so I got to see for myself. I could see those funny little plastic loops at either end of the stent, and that my kidney looked less swollen than last time. I feel that I'm heading to vacation feeling about as good about my current state as I can. And after vacation, stay tuned for updates on future chemotherapy!
Some of you reading this blog know more about receiving chemo treatments than I do, but lots of you who know me have asked me questions about receiving chemo, what it's like, what happens, what the two different chemos are like, etc. So, I thought I would share a few of the details I've observed and experience in my two rounds. Those of you who have been there, feel free to comment on your own experiences!
In addition, I'm remembering that Leroy (of Leroy's blog at NPR) was interviewed and filmed in the chemo room for a special scheduled to appear this spring on TV. Last December, he had a fellow journalist write in his blog about her observations in the Chemo Room, and those are worth reading if you have no prior experience. The documentary will be on Discovery Channel, and whenever it will be, I should get a heads-up from Leroy's blog, and I can mention its air date when I learn of it.
The Chemo Room at Beth Israel Deaconness, where I go for chemo, is a great big room with a nurse's station in the center, and chairs that can recline all around the outside wall. Most of the chairs can be curtained off, if need be, although I haven't felt the need, and so I've been able to observe lots of other folks receiving their chemo treatment who are also not behind curtains. As Elissa Rubin, the journalist mentioned above, notes, folks are dressed in street clothes. I would guess the only reason to be in a hospital jonny would be because you were already admitted to the hospital. Some folks even dress up for the trip to this hospital, reminding me of my favorite aunt, Win, who still loved to dress up and wear a stylish hat when flying on airplanes before she died early in this decade.
The session starts with checking in with the chemo nurse, Linda, and possibly the oncology nurse, Sue, who may come by. This last time I talked with Linda about slowing things down from the first session (where the infusion took about 2 hours), and she agreed. She put the IV in, and gave me decadron IV (anti-nausea med), then benadryl (because I'd had a hive during the first session), and she brings me a pill of anti-nausea med, whose name we can't remember. When it's time to actually begin the infusion of oxaliplatin, the chemo nurse and one other person come together to confirm the dose and medication and that I'm the patient it's designed for. This last session, they did slow down the infusion, and I think it took more like 3 hours. But I think it was still too fast, given how I felt after. But I get ahead of myself.
Patty and I bring along a bag of snacks and things to do, but there are also volunteers coming around offering food. Does that seem strange, that someone would eat during chemo? I thought so, at first, but then found that snacks and a lunch tasted pretty good during the time I was sitting there (having already been pumped with anti-nausea meds). After lunch, they came by offering ice cream, and I remembered readily that eating ice cream would not be a good idea, so both Patty and I declined. I find that I like listening to music with my iPod, sometimes I'll pick up a good book (if i have one), sometimes Patty and I will chat, especially at the beginning. And I watch people, the others in the chemo room with me.
On my last visit to the chemo room, there was one man who seemed to be dozing through his infusion (I was envious - Does that make it go faster?), one woman who came in to receive platelets (they were very yellow, and Patty could read the bag), and another woman who received transfusions, two, of blood, while she was there (the blood was easy to spot from across the room, with the big "O" on the bag). Sitting next to me was a man receiving oxaliplatin also, plus one or two other drugs. He looked like an old hand at this, and had a port in his chest for the infusion. (A port is inserted as day surgery, separate from the chemo, and means that when something needs to be inserted (chemo drugs) or withdrawn (blood), a new IV doesn't need to be started in the arms or hands. Apparently a lot of folks have trouble with their veins, and I have also heard that the port can ease the infusion. Since I had a rough round with infusion #2, I will be learning more about that.)
So what happened during the second infusion? I guess it was just too much, too fast, and somehow my body couldn't tolerate it well. I've already written about how I came home and spent the rest of the day in bed, and also about talking with Sue last week about the possibility of doing some things to make it easier next time.
I still haven't touched base with the oncologist about the next infusion and whether or not to do a port (I'm leaning toward yes), and with the urologist about the stent. But my CT scan pictures did arrive by FedEx yesterday, so I got to see for myself. I could see those funny little plastic loops at either end of the stent, and that my kidney looked less swollen than last time. I feel that I'm heading to vacation feeling about as good about my current state as I can. And after vacation, stay tuned for updates on future chemotherapy!
Monday, March 05, 2007
So Far, So Good - No Sign of Cancer Spread
This morning was my long-awaited CT scan to see if the tumors are responding to the chemotherapy. Patty came with me, as I'm still feeling less than my usual self following the stomach virus, and a lot of the morning was uneventful . . . banana flavored barium, CT scan, request for DVD of the scan, blood drawn, waiting for the DVD of the scan, only to be told that their DVD burning machine was broken. So, I came home without the pictures, which was frustrating.
But this afternoon, as promised, Dr. M called, with a draft of the radiologist report and his own reading of the scan. The radiologist thinks things look the same; Dr. M thinks the tumor in my abdomen may be slightly smaller. In any event, it's not larger, which suggests that the chemo is having an impact. With gallbladder cancer, it's not unusual for a response to be modest. These drugs were developed for other cancers, and the doctors are just trying them out on those of us with this rare - "exotic" - cancer. Dr. M said that the stent seems to have relieved some of the backup in my kidney, but that the kidney wasn't completely normal.
Of course I would have rather heard that the tumor had vanished, but this is at least modestly good news. And with this news we'll head out of town on Friday, ready for this much anticipated vacation!
But this afternoon, as promised, Dr. M called, with a draft of the radiologist report and his own reading of the scan. The radiologist thinks things look the same; Dr. M thinks the tumor in my abdomen may be slightly smaller. In any event, it's not larger, which suggests that the chemo is having an impact. With gallbladder cancer, it's not unusual for a response to be modest. These drugs were developed for other cancers, and the doctors are just trying them out on those of us with this rare - "exotic" - cancer. Dr. M said that the stent seems to have relieved some of the backup in my kidney, but that the kidney wasn't completely normal.
Of course I would have rather heard that the tumor had vanished, but this is at least modestly good news. And with this news we'll head out of town on Friday, ready for this much anticipated vacation!
Saturday, March 03, 2007
Appetite
Not having had an appetite for much of the last six weeks (chemotherapy), but especially the last three days (stomach virus), I woke up during the night thinking about appetite, and writing a post on the subject. Also, I was talking with Tia last night, and we were commiserating about the lack of appetite, and how hard it is to eat when nothing tastes good.
Where does our appetite come from? Most basically, it's an element essential to human survival, ensuring that we get the food and beverage needed to sustain life. Why does appetite change? Illness, certainly, and as so many of us know, the treatment for cancer known as chemotherapy. With so many of us in the U.S. struggling to keep our weight under control, when faced with a dizzying array of possible, delectable things to eat and drink, it's a bit strange to be thinking about appetite and lack of it. But for those of us with cancer, and those of us undergoing chemotherapy, lack of appetite is very real. It's not just nausea, although that's part of it, it's that even when we eat, things just don't taste that good.
For most of my life, I have loved to eat. I love the smell, texture, taste of food, and I enjoy cooking and baking. My first extended period of detachment from the joy of eating came in 1995 when I contracted dengue fever after a church mission trip to Nicaragua. (At least I assume I had dengue fever, although it was never confirmed by a lab.) Fever, nausea, vomiting, diarrhea, lots of the same symptoms of a stomach virus, but it just didn't quit. I was pretty sick for three weeks, and got better only slowly. As I recovered, I found I was only interested in "white food" - potatoes, pasta, bread, bland food. I would watch others eating, and would remember, distantly, enjoying eating, looking forward to meals. It took a long time for my previous relationship with food to return. My experience with chemotherapy is more like that experience with food and lack of appetite than any other I've had.
In researching this post, I learned that there is a scientific journal called Appetite. The research areas for publication cover a wide range of topics, including "behavioural nutrition and the cultural, sensory, and physiological influences on choices and intakes of foods and drinks. It covers normal and disordered eating and drinking, dietary attitudes and practices and all aspects of the bases of human and animal behaviour toward food." Who knew scientists were interested in all of those things? Clearly, anything I can say on the topic is very limited!
There's also a book about food and eating called Appetite, by Nigel Slater. He reflects on our relationships with food and food preparation, and also seems to include some recipes. I never heard of this book before, but it sounds interesting. However, in the table of contents, there is no mention of "chemotherapy" and appetite. So, that's no help!
So what can those of us on chemotherapy do about our lack of appetite? Doctors can give us anti-nausea meds (and they do), and I guess there are even drugs to stimulate appetite (I heard a doctor prescribing some to the person next to me in the chemo room). But I'd like to stimulate my appetite without drugs, and make sure that I am getting the nutrition I need to support my body's functioning and fight against this cancer that endangers my existence.
One book that specifically focuses on what those with cancer can do about loss of appetite is Return to Wholeness by David Simon. He's an M.D. with an ayurvedic perspective, so he talks about a drink to stimulate appetite (equal parts gingerroot juice, lemon juice, honey, and water with a pinch of black pepper; how do I squeeze juice from gingerroot?), and some natural ayurvedic shakes and soups. I remember reading this section of the book last fall, when my appetite was normal, and thinking I probably wouldn't need his suggestions. Was I ever wrong! Now that I've rediscovered it, I need to try some of his ideas.
I began this post this morning, and now I'm ready to put it on the blog. Over these hours, I've experimented with trying to eat more. I woke up thinking about homemade blueberry muffins, so I made them. They were good, but didn't taste quite right. Then I tried a half-banana, a drinkable yogurt, and some reheated mashed potatoes. (I decided to return to the "white food" approach to diet!) So far, so good. Thanks for reading my ramblings on this topic!
Where does our appetite come from? Most basically, it's an element essential to human survival, ensuring that we get the food and beverage needed to sustain life. Why does appetite change? Illness, certainly, and as so many of us know, the treatment for cancer known as chemotherapy. With so many of us in the U.S. struggling to keep our weight under control, when faced with a dizzying array of possible, delectable things to eat and drink, it's a bit strange to be thinking about appetite and lack of it. But for those of us with cancer, and those of us undergoing chemotherapy, lack of appetite is very real. It's not just nausea, although that's part of it, it's that even when we eat, things just don't taste that good.
For most of my life, I have loved to eat. I love the smell, texture, taste of food, and I enjoy cooking and baking. My first extended period of detachment from the joy of eating came in 1995 when I contracted dengue fever after a church mission trip to Nicaragua. (At least I assume I had dengue fever, although it was never confirmed by a lab.) Fever, nausea, vomiting, diarrhea, lots of the same symptoms of a stomach virus, but it just didn't quit. I was pretty sick for three weeks, and got better only slowly. As I recovered, I found I was only interested in "white food" - potatoes, pasta, bread, bland food. I would watch others eating, and would remember, distantly, enjoying eating, looking forward to meals. It took a long time for my previous relationship with food to return. My experience with chemotherapy is more like that experience with food and lack of appetite than any other I've had.
In researching this post, I learned that there is a scientific journal called Appetite. The research areas for publication cover a wide range of topics, including "behavioural nutrition and the cultural, sensory, and physiological influences on choices and intakes of foods and drinks. It covers normal and disordered eating and drinking, dietary attitudes and practices and all aspects of the bases of human and animal behaviour toward food." Who knew scientists were interested in all of those things? Clearly, anything I can say on the topic is very limited!
There's also a book about food and eating called Appetite, by Nigel Slater. He reflects on our relationships with food and food preparation, and also seems to include some recipes. I never heard of this book before, but it sounds interesting. However, in the table of contents, there is no mention of "chemotherapy" and appetite. So, that's no help!
So what can those of us on chemotherapy do about our lack of appetite? Doctors can give us anti-nausea meds (and they do), and I guess there are even drugs to stimulate appetite (I heard a doctor prescribing some to the person next to me in the chemo room). But I'd like to stimulate my appetite without drugs, and make sure that I am getting the nutrition I need to support my body's functioning and fight against this cancer that endangers my existence.
One book that specifically focuses on what those with cancer can do about loss of appetite is Return to Wholeness by David Simon. He's an M.D. with an ayurvedic perspective, so he talks about a drink to stimulate appetite (equal parts gingerroot juice, lemon juice, honey, and water with a pinch of black pepper; how do I squeeze juice from gingerroot?), and some natural ayurvedic shakes and soups. I remember reading this section of the book last fall, when my appetite was normal, and thinking I probably wouldn't need his suggestions. Was I ever wrong! Now that I've rediscovered it, I need to try some of his ideas.
I began this post this morning, and now I'm ready to put it on the blog. Over these hours, I've experimented with trying to eat more. I woke up thinking about homemade blueberry muffins, so I made them. They were good, but didn't taste quite right. Then I tried a half-banana, a drinkable yogurt, and some reheated mashed potatoes. (I decided to return to the "white food" approach to diet!) So far, so good. Thanks for reading my ramblings on this topic!
Thursday, March 01, 2007
A New Month on the Calendar
It's March! When the calendar turns to this month, spring is on the way. So what if snow is forecast for tonight, the end of winter is in view! A new month for me also means a new month of surviving, and thriving, despite the cancer and the chemotherapy. Last weekend I officially passed 9 months since diagnosis. Last summer, after my diagnosis of gallbladder cancer, I was hoping I'd live to see another spring, but I had no idea what state I'd be in when spring arrived.
This last day has left me dealing with more mundane health issues. I have a stomach virus, most likely the norovirus. Nausea, vomiting, diarrhea, the whole picture. The "good" news, in a mixed up way, is that Patty got it first, a few nights ago, so when it happened to me, I didn't think it was a side effect of the chemo. I just assumed I had a stomach virus. Even the Boston Globe had an article today about how widespread the virus is in the area.
For those of you who worry about me, yes, I am staying hydrated. Lots of flat gingerale, and a little chicken broth, a few crackers, half a banana, some water. And yes, I did call the oncology nurse today to touch base with her about how I was feeling and what I should do. She told me not to worry about lingering symptoms unless they continue into tomorrow. I've spent the day in bed, warm and snuggly, napping, reading, napping some more. And visiting the bathroom a lot.
So, it's a new month, and a week from tomorrow we get into an airplane to fly to St. Thomas, USVI, and then a ferry to St. John for 10 days. Every bright day with blue skies reminds me of the warm, sunny weather there, and all of the sunshine oriented things we will be doing. Every cell in my body is eager to soak up the warmth and the Vitamin D (except you bad cancer cells; no warmth or vitamins for you!) I guess it's pretty clear that I'm really, really looking forward to this vacation.
This last day has left me dealing with more mundane health issues. I have a stomach virus, most likely the norovirus. Nausea, vomiting, diarrhea, the whole picture. The "good" news, in a mixed up way, is that Patty got it first, a few nights ago, so when it happened to me, I didn't think it was a side effect of the chemo. I just assumed I had a stomach virus. Even the Boston Globe had an article today about how widespread the virus is in the area.
For those of you who worry about me, yes, I am staying hydrated. Lots of flat gingerale, and a little chicken broth, a few crackers, half a banana, some water. And yes, I did call the oncology nurse today to touch base with her about how I was feeling and what I should do. She told me not to worry about lingering symptoms unless they continue into tomorrow. I've spent the day in bed, warm and snuggly, napping, reading, napping some more. And visiting the bathroom a lot.
So, it's a new month, and a week from tomorrow we get into an airplane to fly to St. Thomas, USVI, and then a ferry to St. John for 10 days. Every bright day with blue skies reminds me of the warm, sunny weather there, and all of the sunshine oriented things we will be doing. Every cell in my body is eager to soak up the warmth and the Vitamin D (except you bad cancer cells; no warmth or vitamins for you!) I guess it's pretty clear that I'm really, really looking forward to this vacation.
Wednesday, February 28, 2007
Off Chemo for Now
Yesterday, I talked with the oncology nurse, Sue, about my very hot and sore feet. She told me to go off the Xeloda. (I know from the discussion boards that folks can end up with very painful sores on hands and feet with Hand-Foot Syndrome, and I guess she was trying to help me avoid getting worse. If you read this link to more information, you see that what is happening is that the drug is leaking out the capillaries in my feet and irritating them and the surrounding tissue. Weird.)
So, I'm mostly relieved, and a little anxious about the impact on my tumor. But I am pleased to begin de-toxing from the drugs three days early. Already this morning, my feet felt a little less hot and a little less sore. I'm working at home today to give them a break, and plan to be back on campus tomorrow.
Sue and I also talked about how hard the last oxaliplatin infusion was, and I told her I want to do some things to make it easier next time. I told her what had happened, and she commented, "So, you toughed it out." I guess she's right, I did. I just wanted the infusion to be done, so I didn't have them stop earlier or slow it down. Anyway, they can infuse first with calcium and magnesium (I think that's the combination), and that seems to improve the tolerance for the drug. To ease the pain in the arm being infused, they can put in a port in my chest, so that the drugs are going directly into a large vein, not a small one. She said - and I've read - that the port can make a difference.
So, this coming Monday I go for the CT scan, and we see what's inside. I'm hopeful and optimistic that there's some good news there, although this is indeed an unpredictable journey.
To all of you who wrote about "Make no comparisons," I do indeed find it easier to ignore the opinions of others since turning 50 and settling into maturity. But even from that easier place, there are moments of falling back into that old place. Thanks for your sharing and your cheerleading!
So, I'm mostly relieved, and a little anxious about the impact on my tumor. But I am pleased to begin de-toxing from the drugs three days early. Already this morning, my feet felt a little less hot and a little less sore. I'm working at home today to give them a break, and plan to be back on campus tomorrow.
Sue and I also talked about how hard the last oxaliplatin infusion was, and I told her I want to do some things to make it easier next time. I told her what had happened, and she commented, "So, you toughed it out." I guess she's right, I did. I just wanted the infusion to be done, so I didn't have them stop earlier or slow it down. Anyway, they can infuse first with calcium and magnesium (I think that's the combination), and that seems to improve the tolerance for the drug. To ease the pain in the arm being infused, they can put in a port in my chest, so that the drugs are going directly into a large vein, not a small one. She said - and I've read - that the port can make a difference.
So, this coming Monday I go for the CT scan, and we see what's inside. I'm hopeful and optimistic that there's some good news there, although this is indeed an unpredictable journey.
To all of you who wrote about "Make no comparisons," I do indeed find it easier to ignore the opinions of others since turning 50 and settling into maturity. But even from that easier place, there are moments of falling back into that old place. Thanks for your sharing and your cheerleading!
Monday, February 26, 2007
"Make No Comparisons" - Brugh Joy's Spiritual Lesson #1
Since my post of Feb. 20, I've been thinking about how I couldn't stop comparing myself to others, knowing that other people on chemo have a hard time, or an even harder time than I am. It brought to mind some spiritual lessons I keep learning over and over again. I know it's human to compare our experience to others, but it's not always that helpful.
When I was taking workshops with W. Brugh Joy, I read his book Joy's Way: A Map for the Transformational Journey. An Introduction to the Potentials for Healing with Body Energies. In the third chapter of the book, Brugh describes a cosmic experience of a woman who came to talk with him about her challenges in life. A few months earlier, she had been walking along a beach, saw an iridescent light, and heard a booming voice deliver three injunctions. She thought she was going mad. The voice said, slowly and repetitively, "'There are three injunctions for you. Pay attention to them. Make no comparisons; make no comparisons. Make no judgments; make no judgments. Delete your need to understand; delete your need to understand.'" (p. 59)
Today I want to share some of my thoughts about the first injunction: Make no comparisons. Like many spiritual lessons, I feel that I have been learning and relearning this lesson for decades. My comparing myself to others on chemotherapy is an example. I feel that the reality is that my task, my spiritual work right now, is to be present to my experience and to see what it has to teach me. I can empathize with the experience of others, but making comparisons is not useful (human, but not useful).
In his book, Brugh makes a few useful points about this injunction. He says "The tendency to live in ideas about reality isolates the mind from the true reality of the physical level . . . self is - the self is true, without question - but ideas about self may be true or false, . . . If the individual insists on holding on to ideas rather than harmonizing with what is, pain must follow." In these words, I hear him saying that believing things about ourselves, in comparison to others, isolates us from the truth about our self. I hope I'm not making this too ponderous, because it's a lesson that has really served me.
For some of us, perhaps many of us, this comparison comes in looking at our physical attributes and judging them as wanting in comparison to friends, family, societal ideals, etc. Brugh gives an example of this for himself in his book by talking about his dissatisfaction with his physical appearance for years. I was doing this in a small way when I felt overdressed for the weather on Feb. 20, and didn't like what I saw was the way others were seeing me. For much of my life, I have judged my physical body by cultural standards and found it wanting. Now that the calendar year says I will turn 60 if I live until my June birthday, I can get caught less in that, but it's still there. Last fall, I saw an old friend whom I hadn't seen in perhaps 20 years, and a mutual friend commented back to me that she thought I looked old. Well, we are the same age, but I have let my hair turn gray. I haven't completely accepted my aging body, but I do recognize that making comparisons with younger bodies accomplishes nothing. Aging is something we baby boomers don't always do gracefully, I fear.
On a spiritual level, making comparisons can mean seeing others as more spiritually evolved than we are, and feeling hopeless to achieve what someone else has achieved. For me, with my gallbladder cancer diagnosis, there is this desire not to be facing the challenges I have. I want to live a longer life, I want to see my kids grow up, I even want a less serious cancer if I have to have cancer. But none of that wishing changes the reality. Can I give up those comparisons to the life I wish I had to, to the life others have, to allow myself to benefit from the life I do have?
Toward the end of the section on this injunction, Brugh adds "It is especially important that one not interpret the injunction against making comparisons as an exhortation to live in a state of complacency, where everything that the outer mind sees is rationalized as being perfect or right, without need for change. Complacency is the way of the ignorant." I've never thought of this spiritual lesson as encouragement to accept everything the way it is, without question or concern, but I can see how it could be read that way.
Make no comparisons. Be true to oneself, and be willing to look under the rocks of consciousness to see what is hidden from awareness. Under those rocks lie the possibility of transformation, of true change that allows us to fully unfold into the person, the spiritual person, we were meant to be, we were created to be.
On another day, I'll add Brugh's thoughts - and my own - about the other two injunctions.
Today is a pretty good day for me in Chemo World, as I grade some papers, make up a midterm, and try to stay off my feet with their "hot spots." Three and a half days remaining in this cycle of chemo . . .
Sunday, February 25, 2007
Six Cell Rules Broken by Cancer
How do cancer cells do their thing? Why are they so dangerous? Why can there be cancer in essentially each organ of our bodies? What makes them break the rules of cell existence? I have no answers to any of those questions, and as far as I can tell, the scientists don't know a whole lot more than I do about the origins of cancer. But, since I was diagnosed with gallbladder cancer, I have been trying to acquire a real layperson's understanding of the disease. I just read an article that helped me (although, goodness knows, I didn't understand all of it). Mostly, I really, really learned a lot from a small side box to the article entitled "Hallmarks of Cancer."
The article is in the March, 2007 edition of Scientific American, and it's entitled "Mapping the Cancer Genome," about efforts to begin mapping the genes involved with cancer as a way of learning more about the disease in general, and hopefully, ways to treat it. The project is called the Cancer Genome Atlas Project, and the plan is for it to follow the pattern established by the Human Genome Project, which completed mapping of the human genes about three years ago.
But the sidebar talks about the SIX rules of cell existence that are broken by cancer cells! How do they get away with it? Why don't our natural defenses step in after step 1, or 4, or 6 is broken? In the article itself, the author comments that "Some mutations may disable genes that normally protect against abnormal cell behavior, whereas others increase the activity of disruptive genes. Most cells must acquire at least several of these alterations before they become transformed into cancer cells - a process that can take years." (p. 52)
The sidebar begins by commenting the six abnormal capabilities listed below together give tumors their lethal power to overrun their native tissue and spread through the body.
Here are the Six Cell Rules Broken by Cancer:
1. "Self-sufficiency in growth signaling. Cancer cells amplify external growth cues or generate their own."
2. "Insensitivity to antigrowth signals. Cancer cells become deaf to quiescence cues from surrounding tissue." (I'm a little fuzzy about this one, but I think it means that cells signal each other that it's time to grow or time to stop growing, but cancer cells don't listen to the "stop growing" message.
3. "Evasion of Cell Suicide. Mechanisms that should trigger or carry out a self-destruct program in damaged cells are disabled or overriden." (This is the apoptosis I've been writing about for months.)
4. "Limitless replicative potential. Cancer cells evade intrinsic limits on the number of times a normal cell can divide."
5. "Sustained blood vessel growth. Tumors emit signals promoting the development of new blood vessels to deliver oxygen and nutrients." (This is why one of the most promising new anticancer drugs, Avastin, is in trials for most/many cancers. It was included in the clinical trial originally proposed to me last summer, and I may still add it to the regimen.)
6. "Invasiveness and motility. Cancer cells defy multiple signals and forces that hold a cell in place and prevent it from traveling to - and thriving in - other tissues." (This is the metastasis that is so dangerous to those of us with cancer, where the cells wander about the body until they find a spot to settle, divide, and grow, and become a danger to this new organ.)
Anyone reading this with more knowledge of biochemistry and these statements, please feel free to chime in!
So, today is Day 10 of this cycle, and I felt really, really tired and sleepy earlier in the day, but have felt better as the day went on. I told folks at church I felt "floppy." Now I'm not peppy, but better. I was nauseous a lot yesterday, and had better appetite today. Now I'm on the downward slope of this cycle, and hoping that each day is better than the one before. Twelve days until we leave for St. John! Yeah for sunshine and swimming!
The article is in the March, 2007 edition of Scientific American, and it's entitled "Mapping the Cancer Genome," about efforts to begin mapping the genes involved with cancer as a way of learning more about the disease in general, and hopefully, ways to treat it. The project is called the Cancer Genome Atlas Project, and the plan is for it to follow the pattern established by the Human Genome Project, which completed mapping of the human genes about three years ago.
But the sidebar talks about the SIX rules of cell existence that are broken by cancer cells! How do they get away with it? Why don't our natural defenses step in after step 1, or 4, or 6 is broken? In the article itself, the author comments that "Some mutations may disable genes that normally protect against abnormal cell behavior, whereas others increase the activity of disruptive genes. Most cells must acquire at least several of these alterations before they become transformed into cancer cells - a process that can take years." (p. 52)
The sidebar begins by commenting the six abnormal capabilities listed below together give tumors their lethal power to overrun their native tissue and spread through the body.
Here are the Six Cell Rules Broken by Cancer:
1. "Self-sufficiency in growth signaling. Cancer cells amplify external growth cues or generate their own."
2. "Insensitivity to antigrowth signals. Cancer cells become deaf to quiescence cues from surrounding tissue." (I'm a little fuzzy about this one, but I think it means that cells signal each other that it's time to grow or time to stop growing, but cancer cells don't listen to the "stop growing" message.
3. "Evasion of Cell Suicide. Mechanisms that should trigger or carry out a self-destruct program in damaged cells are disabled or overriden." (This is the apoptosis I've been writing about for months.)
4. "Limitless replicative potential. Cancer cells evade intrinsic limits on the number of times a normal cell can divide."
5. "Sustained blood vessel growth. Tumors emit signals promoting the development of new blood vessels to deliver oxygen and nutrients." (This is why one of the most promising new anticancer drugs, Avastin, is in trials for most/many cancers. It was included in the clinical trial originally proposed to me last summer, and I may still add it to the regimen.)
6. "Invasiveness and motility. Cancer cells defy multiple signals and forces that hold a cell in place and prevent it from traveling to - and thriving in - other tissues." (This is the metastasis that is so dangerous to those of us with cancer, where the cells wander about the body until they find a spot to settle, divide, and grow, and become a danger to this new organ.)
Anyone reading this with more knowledge of biochemistry and these statements, please feel free to chime in!
So, today is Day 10 of this cycle, and I felt really, really tired and sleepy earlier in the day, but have felt better as the day went on. I told folks at church I felt "floppy." Now I'm not peppy, but better. I was nauseous a lot yesterday, and had better appetite today. Now I'm on the downward slope of this cycle, and hoping that each day is better than the one before. Twelve days until we leave for St. John! Yeah for sunshine and swimming!
Friday, February 23, 2007
Good News on the Chemo Front
What a delight your comments have been to my post yesterday about oxalis and oxaliplatin! Mikebel, I don't know you, and don't have any way of contacting you, but I really appreciate the information about oxalic acid, and how oxaliplatin was developed. I didn't know any of that, and I love information! I also love rhubarb, but I'd rather eat it, even without sweetener, than have infusions with oxaliplatin! And I think I'll pass on the spin in the washer with the oxalic acid, Jan, but I get that it's a serious chemical!
So, without wanting to get too excited, I have two reports on the chemo front.
The first is that the "spot" in my abdomen (actually "spot #2" since the first one was removed), is noticeably smaller than it was in January when I had my last scan. It's still there, it's round and hard, but it no longer feels like the tumor that wants to gobble up my insides, or grow to be a grapefruit. Of course, I won't know anything about the more dangerous tumor that's inside my abdomen, out of reach, and endangering some of my internal organs until I have the scan on March 5. Still, it makes sense that if my "spot" is shrinking, so is that nasty tumor inside! So, this gives me optimism that my fight against the tumors is having success! (And after some of the tough days this past week, that's especially good . . . ) Since the surgical oncologist, Dr. M, had mentioned that this might be a reason to keep this "spot," I'm appreciating his suggestion. I can't believe I can actually feel a change in it!
The other report is more anecdotal, me making up a story again. I have acne rosacea on my face, across my nose, and it is an annoying skin condition that produces ugly red spots and blemishes. I have topical medicine for it (metrogel), which may be keeping it from getting worse, but mostly hasn't seemed to do much. However, I've noticed in the last two weeks that my skin is peeling around my nose, and my red spots seem to be slowly clearing up. So, I've decided (here's my story) that it's the chemo, which targets fast growing cells in the body, that has attacked my rosacea and made it much less problematic. (I still say that once a person is in her 50s, she should not have problems with acne of any variety, but this ailment has not listened to my complaints.) Imagine! The chemo may have cleared up my skin!
So, I've felt tired but good today except for my appetite, which is in the pits. I kept thinking about milkshakes, so I finally made one this evening, and have to drink it in very slow sips to warm it in my mouth, but I feel like I'm breaking some rule in a fun way! The thing is, I will have to find something resembling dinner also, because I have to take my Xeloda tonight after dinner. Otherwise, I'd probably just pass on dinner altogether . . .
Thank you again for all of the responses, which make me smile every time I think about them. I so appreciate feeling that we are in an extended, long distance conversation in writing . . .
So, without wanting to get too excited, I have two reports on the chemo front.
The first is that the "spot" in my abdomen (actually "spot #2" since the first one was removed), is noticeably smaller than it was in January when I had my last scan. It's still there, it's round and hard, but it no longer feels like the tumor that wants to gobble up my insides, or grow to be a grapefruit. Of course, I won't know anything about the more dangerous tumor that's inside my abdomen, out of reach, and endangering some of my internal organs until I have the scan on March 5. Still, it makes sense that if my "spot" is shrinking, so is that nasty tumor inside! So, this gives me optimism that my fight against the tumors is having success! (And after some of the tough days this past week, that's especially good . . . ) Since the surgical oncologist, Dr. M, had mentioned that this might be a reason to keep this "spot," I'm appreciating his suggestion. I can't believe I can actually feel a change in it!
The other report is more anecdotal, me making up a story again. I have acne rosacea on my face, across my nose, and it is an annoying skin condition that produces ugly red spots and blemishes. I have topical medicine for it (metrogel), which may be keeping it from getting worse, but mostly hasn't seemed to do much. However, I've noticed in the last two weeks that my skin is peeling around my nose, and my red spots seem to be slowly clearing up. So, I've decided (here's my story) that it's the chemo, which targets fast growing cells in the body, that has attacked my rosacea and made it much less problematic. (I still say that once a person is in her 50s, she should not have problems with acne of any variety, but this ailment has not listened to my complaints.) Imagine! The chemo may have cleared up my skin!
So, I've felt tired but good today except for my appetite, which is in the pits. I kept thinking about milkshakes, so I finally made one this evening, and have to drink it in very slow sips to warm it in my mouth, but I feel like I'm breaking some rule in a fun way! The thing is, I will have to find something resembling dinner also, because I have to take my Xeloda tonight after dinner. Otherwise, I'd probably just pass on dinner altogether . . .
Thank you again for all of the responses, which make me smile every time I think about them. I so appreciate feeling that we are in an extended, long distance conversation in writing . . .
Thursday, February 22, 2007
Oxaliplatin & Oxalis - Day 7 of this cycle
Now that I'm a week past my oxaliplatin infusion, I'm feeling better. That is one intense drug! I think one of the reasons the water has tasted so bad has been that the drug messes with my electrolyte balance, and makes many things taste funky. Thanks to the many folks who wrote with suggestions about what warm beverages to drink. Some of them I hadn't thought of! I appreciate the support and the thoughtfulness of your suggestions.
But this post is about flowers, of the family Oxalis, with two of them pictured here. From the beginning, I've been struck by the similarity between the beginning of these two words, oxaliplatin, the chemo drug I'm infused with, and oxalis, which is a lovely flower with three lobed leaves. I've occasionally grown oxalis, as a house plant (they are often sold as "shamrocks" in March, with their three-lobed leaves), but even that's not the story I want to tell. I just tried to look up the origin of the word oxaliplatin, and got nowhere. I do know that it's a "platinum" drug, so that explains the end of its name. I don't know about its beginning. So, here's my oxalis story.
When I was 10 and in fifth grade, I participated in the New Jersey State Grange Spelling Bee. Spelling has always come easily to me, and I had won for my school, and went to the state capital, Trenton, for the state spelling bee. "Way back then," in the 1950s, we didn't prepare as intensively as kids do for state spelling bees (if Akeelah and the Bee is any indication), but I think I did some practicing before going. As the spelling bee went on, I was doing very well. Then there were just two of us left standing on stage. My next word? Oxalis, except that the person reading the words pronounced it "oxy-lis." I asked for a definition, learned that it was a flower/plant, asked for it to be repeated (and wished later I'd asked for alternative pronounciations). With the pronunciation, it sounded most like oxygen, so I went with o-x-y-l-i-s. As you already know, I was wrong. The one contestant still standing spelled her word correctly, and won the state championship.
I was happy to win second place in the state, and to get my picture in the paper. When they asked me to say something, I said it was good that people would now finally hear of "Vincentown," the tiny town in NJ where my family was living. I didn't like being from someplace no one had ever heard of. Aren't ten year olds amazing? Like my getting second place was really going to make a difference! Anyway, I always like telling that story, and I'm pleased I did so well, and I've been fascinated by the flower oxalis ever since. And I wouldn't misspell it again, that's for sure! Lucy is a good speller, too, and it's been fun sharing this story with her as she has worked her way through increasingly difficult words.
So, there's probably no connection between this intense chemotherapy drug and these sweet little flowers. But I have better associations with the drug if I think of the flowers. Tomorrow begins Week 2 of this cycle. I'm hoping for increasingly less cold sensitivity, and increasingly more appetite and that food and beverages will taste better.
Tuesday, February 20, 2007
Today, I Haven't Felt Healthy
This is about chemo side effects. I don't think my essential health has changed (although I'm hoping that the tumors are being eaten up by the chemo), but I had a rough day today. As I start to write this, I worry about whining, but I also want to share some of this, because I know I'm not alone in experiencing side effects from the chemo.
The oxaliplatin makes me sensitive to the cold. Today was warmer than it's been, reaching almost 50 degrees F in Boston, so my long johns (under my pants), and long coat and hat and scarf and gloves made me feel and look overdressed for the weather. And, I confess, I was hot underneath all of those layers this afternoon. But, I had to keep the scarf over my mouth and nose because the chemo is making them super sensitive to the cold. My nose feels like it's 10 degrees out, with a biting wind, and every nose hair is freezing. But it was 49 degrees F when I walked to the train this afternoon!
In the elevator as I was leaving my office building, a secretary from our floor (but not my office, where everyone knows I'm on chemo) looked at me bundled up and said, puzzled, "It's warm outside." "I know," I responded, "but I'm on chemotherapy, and a side effect is extreme sensitivity to cold. That's why I'm bundled up." I felt that her comment had just confirmed for me how bizarre I looked.
The cold sensitivity makes me unable to drink even "room temperature" water. Do you know how uninteresting warmed, unflavored water tastes? I know I'm not drinking enough, as a result. My tea doesn't taste that great in the morning, and coffee is tasting too strong. What to drink so that I don't get dehydrated?
(A next day note on the beverage point: After I wrote that, I started to wonder what would make my tea taste better, and decided to add a little sugar and some milk, making the tea taste like what Mom would fix for me when I was sick as a child. It seems to be doing the trick, and I've had more liquids in the last 12 hours. Still, if anyone has great tips on what to drink to stay hydrated when only tepid or warm liquids can be consumed, and everything tastes yucky, I'm open to suggestion!)
The Xeloda can give me "hand-foot syndrome." I'm noticing already that my hands and feet have "hot spots," like I've been hiking and I'm developing blisters. Makes me feel like I should spend tomorrow sitting and grading those papers that are still waiting from the weekend. And I have decided that I'll work from home and not go to the city - I don't teach Wednesdays - and not have to deal with whatever weather tomorrow brings.
[A brief interlude for another voice within me: "These side effects aren't that bad. Lots of people have it a lot, lot worse." My inner response: "Yes, but they are my side effects. And besides, I don't want to compare my experience to other people. It's my experience."]
All right, there's more, but enough already. I still have my hair, I'm not vomiting, I can eat and keep food down, I can function well enough to work. I know lots of people have worse side effects than I'm having. But, with treatment that's essentially experimental with gallbladder cancer, and which may or may not be having an impact on my tumors, I have to keep asking myself if the benefit outweighs the problems. It's about quality of life as well as quantity. I'm not having a CT scan until March 5, and that's when we'll learn what's happening inside. And as each day passes since the oxaliplatin infusion, the side effects should lessen, and I should be able to drink milk shakes at night, and eat ice cream, and drink cold beverages. And I should be able to breathe the air outside, whether it's 10 degrees or 55, or even 80 (in St. John, in a little more than two weeks!) On this hard day, I just felt like I was fighting a losing battle, walking uphill into a storm, or some such metaphor for things being tough. So, I share this even though I know it's just a snapshot of one day in my journey through cancer world.
The oxaliplatin makes me sensitive to the cold. Today was warmer than it's been, reaching almost 50 degrees F in Boston, so my long johns (under my pants), and long coat and hat and scarf and gloves made me feel and look overdressed for the weather. And, I confess, I was hot underneath all of those layers this afternoon. But, I had to keep the scarf over my mouth and nose because the chemo is making them super sensitive to the cold. My nose feels like it's 10 degrees out, with a biting wind, and every nose hair is freezing. But it was 49 degrees F when I walked to the train this afternoon!
In the elevator as I was leaving my office building, a secretary from our floor (but not my office, where everyone knows I'm on chemo) looked at me bundled up and said, puzzled, "It's warm outside." "I know," I responded, "but I'm on chemotherapy, and a side effect is extreme sensitivity to cold. That's why I'm bundled up." I felt that her comment had just confirmed for me how bizarre I looked.
The cold sensitivity makes me unable to drink even "room temperature" water. Do you know how uninteresting warmed, unflavored water tastes? I know I'm not drinking enough, as a result. My tea doesn't taste that great in the morning, and coffee is tasting too strong. What to drink so that I don't get dehydrated?
(A next day note on the beverage point: After I wrote that, I started to wonder what would make my tea taste better, and decided to add a little sugar and some milk, making the tea taste like what Mom would fix for me when I was sick as a child. It seems to be doing the trick, and I've had more liquids in the last 12 hours. Still, if anyone has great tips on what to drink to stay hydrated when only tepid or warm liquids can be consumed, and everything tastes yucky, I'm open to suggestion!)
The Xeloda can give me "hand-foot syndrome." I'm noticing already that my hands and feet have "hot spots," like I've been hiking and I'm developing blisters. Makes me feel like I should spend tomorrow sitting and grading those papers that are still waiting from the weekend. And I have decided that I'll work from home and not go to the city - I don't teach Wednesdays - and not have to deal with whatever weather tomorrow brings.
[A brief interlude for another voice within me: "These side effects aren't that bad. Lots of people have it a lot, lot worse." My inner response: "Yes, but they are my side effects. And besides, I don't want to compare my experience to other people. It's my experience."]
All right, there's more, but enough already. I still have my hair, I'm not vomiting, I can eat and keep food down, I can function well enough to work. I know lots of people have worse side effects than I'm having. But, with treatment that's essentially experimental with gallbladder cancer, and which may or may not be having an impact on my tumors, I have to keep asking myself if the benefit outweighs the problems. It's about quality of life as well as quantity. I'm not having a CT scan until March 5, and that's when we'll learn what's happening inside. And as each day passes since the oxaliplatin infusion, the side effects should lessen, and I should be able to drink milk shakes at night, and eat ice cream, and drink cold beverages. And I should be able to breathe the air outside, whether it's 10 degrees or 55, or even 80 (in St. John, in a little more than two weeks!) On this hard day, I just felt like I was fighting a losing battle, walking uphill into a storm, or some such metaphor for things being tough. So, I share this even though I know it's just a snapshot of one day in my journey through cancer world.
Monday, February 19, 2007
The Robin in My Backyard
Like many folks who have grown up in the Northeast, I have come to see robins as a first sign of spring, as they return from wintering over somewhere warmer and farther south.
This year, I have a robin in my yard that's never left! I like to make up stories about things, so the story I've made up about this robin ("my" robin) in my thinking is that it was lured to stick around this winter when the winter began so mild. I swear I remember seeing it catch worms in the yard up to mid-January, before the weather turned suddenly and deeply wintry. At first, I worried about what she was eating (Yes, in my mind, she's a "she;" see how I make up stories?), and then I noticed that the berries on the dogwood tree in the side yard were slowly disappearing. Next, she discovered the holly bush in the front yard, full of berries, and she would even sing her tuneless robin song from the front yard, as if she had discovered a great treasure. Now, I don't know of any remaining berries in my yard (although she might), but I see her almost every morning at my water garden.
So, here's a photo of my water garden in winter; no robin; she's too smart to stick around when we (or the yard cats) are outside. In order to allow exchange of oxygen/carbon dioxide for the fish in the water garden, I put in a floating water heater. It keeps the ice from freezing the entire surface of the water, and, in addition to keeping my fish (and any bullfrogs wintering over down in the leaves) alive, it provides fresh liquid water for the birds, and cats, other wildlife, and for my robin. And even for a stray bluebird (formally known as an Eastern bluebird).
A few weeks ago, I saw a bluebird at the water garden, and wondered what it was doing this far north when it's so cold. I don't see bluebirds in my yard in the summer, so I was especially surprised to see her there. My friend Richard, who has bluebird houses and loves them, too, showed me a picture in a bird book of about 10 bluebirds tightly packed in a bluebird house in the winter. The book also said that bluebirds stop eating insects in winter and switch to berries. So then I added to "my story" about "my robin," and figured that, like bluebirds, she has shifted from her usual diet of earthworms to berries.
Okay, I know this has nothing to do with my illness, or my current physical state. So how do I feel today? Pretty good, tolerating the chemo well, eating well. But I'm not going out much with the cold air and my recent infusion of oxaliplatin, so I look out the windows a lot and dream of spring and things growing and turning green again. Even though this robin has stayed for winter, and so is not the typical harbinger of spring, she makes me smile and makes my heart happy. I admire her fortitude, her ability to survive and even thrive in this alien weather. I guess her life-fullness gives me hope, makes me happy. So, I share with you her story.
Credit to Patty for going out on this cold day to take this picture. Thanks, Patty!
Later note: I woke up thinking this morning that not everyone who might read this knows what these birds look and sound like, so I've created links to some websites with photos and bird songs, and some links to water garden pictures - in full summer mode, of course!
Saturday, February 17, 2007
Day 2 of Chemo - Feeling Better
Thanks for the kind words of support, on and off the blog, about yesterday's tough day post-infusion. Now that it's evening of Day 2, I feel I can say that I'm doing better. I still have an incredible sensitivity to any cold, and feel best when I'm sitting on my comfy chair with blankets on my shoulder and lap.
I'm less nauseous than I was last time on Day 2, and I think it's because of the sea bands. So, I've been able to eat, and took my morning Xeloda without a problem.
I finished a great novel today, High Country, by Nevada Barr. Last summer when we were in the southwest, we discovered her mystery novels because they were sold in the national park stores. Her main character, Anna Pidgeon, is a National Park Service ranger, and every adventure takes place in a different national park. She does a wonderful job of conveying the ambiance of the parks - I love a novel that conveys a powerful sense of place - and there's some kind of mystery to be solved in each one of them. This book is set in Yosemite, which we were scheduled to visit last summer, but didn't because of my hospitalization. I wish I had seen it! Anyway, if you are looking for a consistent, good new author of mysteries, I recommend her books. I started this one a few days ago, and read it through the infusion yesterday, last night and today, and now it's done. I only have one or two more of her mysteries to read.
One other medical note. My tumor marker numbers were back yesterday. My CEA, which had climbed to 14 or so, has dropped to 9. My CA 19-9 was about 310 last month, and has climbed to 492. so, we liked the CEA drop, didn't like the CA 19-9 climb, but . . . ? The nurse did comment that it's possible the CA 19-9 was even higher in these weeks before the chemo kicked in, and that it's on the way down.
So, dear friends, know that I am doing well under the circumstances, and especially well in comparison to yesterday. Thank you for your good thoughts and wishes of strength and prayers.
I'm less nauseous than I was last time on Day 2, and I think it's because of the sea bands. So, I've been able to eat, and took my morning Xeloda without a problem.
I finished a great novel today, High Country, by Nevada Barr. Last summer when we were in the southwest, we discovered her mystery novels because they were sold in the national park stores. Her main character, Anna Pidgeon, is a National Park Service ranger, and every adventure takes place in a different national park. She does a wonderful job of conveying the ambiance of the parks - I love a novel that conveys a powerful sense of place - and there's some kind of mystery to be solved in each one of them. This book is set in Yosemite, which we were scheduled to visit last summer, but didn't because of my hospitalization. I wish I had seen it! Anyway, if you are looking for a consistent, good new author of mysteries, I recommend her books. I started this one a few days ago, and read it through the infusion yesterday, last night and today, and now it's done. I only have one or two more of her mysteries to read.
One other medical note. My tumor marker numbers were back yesterday. My CEA, which had climbed to 14 or so, has dropped to 9. My CA 19-9 was about 310 last month, and has climbed to 492. so, we liked the CEA drop, didn't like the CA 19-9 climb, but . . . ? The nurse did comment that it's possible the CA 19-9 was even higher in these weeks before the chemo kicked in, and that it's on the way down.
So, dear friends, know that I am doing well under the circumstances, and especially well in comparison to yesterday. Thank you for your good thoughts and wishes of strength and prayers.
Rough Afternoon & Evening
It's been almost 24 hours, as I write this, since I got my infusion of oxaliplatin yesterday. It's been a rough day for me physically. I just checked the site meter, and I see folks have been checking in. I'm sure some of you wonder how I'm doing since yesterday's infusion, so I wanted to write a post.
The beginning of the infusion went pretty smoothly, but the last half hour or so left my arm was aching, and when it was time to go, I already had pins and needles in my legs, and some trouble walking. And I felt awful. Dozed most of the way home, hoping I wouldn't throw up (and I didn't), and I went right to bed for a few hours when I did get home.
Last night after a light supper, I started a new round of Xeloda, the chemo I take in pill form after breakfast and dinner.
I slept pretty well last night, although my cold sensitivity means that I need to draw warm tap water in order to drink some water during the night. And I have an ache in my shoulder that may require a visit to the chiropractor. Not feeling as healthy and strong today as I was on Wednesday!
I'll take it easy today. I don't have any place I have to be, and nothing I have to do. Actually, that's not completely true, since I have four more batches of papers to grade this weekend. Still, laying low seems like just the ticket for today. I wish I felt better, though.
The beginning of the infusion went pretty smoothly, but the last half hour or so left my arm was aching, and when it was time to go, I already had pins and needles in my legs, and some trouble walking. And I felt awful. Dozed most of the way home, hoping I wouldn't throw up (and I didn't), and I went right to bed for a few hours when I did get home.
Last night after a light supper, I started a new round of Xeloda, the chemo I take in pill form after breakfast and dinner.
I slept pretty well last night, although my cold sensitivity means that I need to draw warm tap water in order to drink some water during the night. And I have an ache in my shoulder that may require a visit to the chiropractor. Not feeling as healthy and strong today as I was on Wednesday!
I'll take it easy today. I don't have any place I have to be, and nothing I have to do. Actually, that's not completely true, since I have four more batches of papers to grade this weekend. Still, laying low seems like just the ticket for today. I wish I felt better, though.
Wednesday, February 14, 2007
Simultaneous Truth
The title for this post comes from my Spring Hill friend, Thom Herman. He may not have coined the phrase, but he was the first one I heard use it. By "simultaneous truth," he meant that two things that appear to be opposite can both be true. I'm in that place with my diagnosis of gallbladder cancer, I have realized.
The first place is understanding the gravity of my diagnosis of gallbladder cancer, and that the prognosis is not good, and that I've already passed more than one of the potential survival deadlines for the diagnosis. I don't deny that it's serious, and I am doing my best to live fully in the awareness of the diagnosis and its significance for my life. I am doing my very best not to live in denial.
Simultaneously, the second place where I stand with my body, my feelings about my body, and my very serious diagnosis, is that I still feel like a healthy person, intrinsically. Yes, I have cancer, and sometime my body, my gallbladder cells, took a turn for the out of control. But, I still feel strong physically, able to live my daily life and do what needs to be done (at least when I don't run out of steam!). I think this is kind of strange, myself, so I'm not sure how it will seem to those of you reading this, but I was thinking about it today on the long drive up to and back from the hospital and my doctor appointments. (Yes, it was a wet, snowy, slushy, rainy, sleety drive, but we made it up and back safely. And Alice, I trust that you and Lexie did as well!) Part of the sense of my innate health was confirmed today by the fact that my blood work came back good again, with all features in the normal range. (This doesn't include the tumor markers, which will be in in a few days, but it's the "CBC" count.) So, my body has held up well under the chemotherapy. Let's hope those cancer cells have been knocked for a loop!
This also impacts the way I respond when someone else refers to my serious illness, my serious diagnosis. Some part of me is surprised to hear that, and then I remember that I do have a serious diagnosis!
Simultaneous truth. Yes, I have cancer, and yes, my natural strong constitution is holding up well under the assault. I seem to have adjusted to the bypass done around my bile duct last May, to the stent between my kidney and bladder, and now my blood has held up under the chemo. My life goes on.
So, with my good blood work, I'll be going in for an infusion of Oxaliplatin on Friday, and will begin another two week round of Xeloda. Then, in a little more than two weeks, on March 5, I'll go in for a CT scan and we'll see if the stent is properly draining my kidney, and if the tumor has stopped growing or even shrunk. One potentially positive note: We told the oncology nurse that sometimes the "spot" in my side aches in the morning if I've slept on that side, and she said maybe that's because the tumor is breaking down. That would be great news!
The first place is understanding the gravity of my diagnosis of gallbladder cancer, and that the prognosis is not good, and that I've already passed more than one of the potential survival deadlines for the diagnosis. I don't deny that it's serious, and I am doing my best to live fully in the awareness of the diagnosis and its significance for my life. I am doing my very best not to live in denial.
Simultaneously, the second place where I stand with my body, my feelings about my body, and my very serious diagnosis, is that I still feel like a healthy person, intrinsically. Yes, I have cancer, and sometime my body, my gallbladder cells, took a turn for the out of control. But, I still feel strong physically, able to live my daily life and do what needs to be done (at least when I don't run out of steam!). I think this is kind of strange, myself, so I'm not sure how it will seem to those of you reading this, but I was thinking about it today on the long drive up to and back from the hospital and my doctor appointments. (Yes, it was a wet, snowy, slushy, rainy, sleety drive, but we made it up and back safely. And Alice, I trust that you and Lexie did as well!) Part of the sense of my innate health was confirmed today by the fact that my blood work came back good again, with all features in the normal range. (This doesn't include the tumor markers, which will be in in a few days, but it's the "CBC" count.) So, my body has held up well under the chemotherapy. Let's hope those cancer cells have been knocked for a loop!
This also impacts the way I respond when someone else refers to my serious illness, my serious diagnosis. Some part of me is surprised to hear that, and then I remember that I do have a serious diagnosis!
Simultaneous truth. Yes, I have cancer, and yes, my natural strong constitution is holding up well under the assault. I seem to have adjusted to the bypass done around my bile duct last May, to the stent between my kidney and bladder, and now my blood has held up under the chemo. My life goes on.
So, with my good blood work, I'll be going in for an infusion of Oxaliplatin on Friday, and will begin another two week round of Xeloda. Then, in a little more than two weeks, on March 5, I'll go in for a CT scan and we'll see if the stent is properly draining my kidney, and if the tumor has stopped growing or even shrunk. One potentially positive note: We told the oncology nurse that sometimes the "spot" in my side aches in the morning if I've slept on that side, and she said maybe that's because the tumor is breaking down. That would be great news!
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