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.
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