MEDICAL UPDATE - NEW CHEMO COCKTAIL
Okay, I'm on the pump! (I call it Hanz-Franz.) It makes a little "zzzt" noise every now and then. It's comforting in some weird way. It's pumping 5FU into me which is the same as Xeloda that I took in pill form previously. I also had some minerals and folic acid and for the first time, Oxaliplatin. I was to have Avastin, too, but I just had it 9 days ago and couldn't have it again today. I hope Dr. B doesn't think I wanted FOLFOX just so I could have a bag to accessorize.
I saw Dr. Kane last Monday in Montrose, and she wanted me to go on this regime. It's worked really well on our friend George Moore who has colon cancer. (We will stop and see George & Glenda in Texas on our way home from our trip.) Dr. B says he's not so sure FOLFOX worked as well on cholangio, but I wanted to try it out and he's agreeable. The Gemzar is probably going to induce the radiation recall and pain. I do have some cramping in my feet. Any cholangio patients out there with stories of FOLFOX, good or bad? I'm all ears.
I have a CT-scan on Wednesday in GJ and will get the pump taken off then and flushed. This "pulling the plug" on the pump after 46 hours is critical in that it has to be flushed by the right people. In the future, I'll probably go to Mountain Medical in Ridgway for flushing. It'll be good to see those folks again.
I was on the ceiling today at Dr. B's office from the steroids. He and Amy his nurse had just gotten back from vacation. (Amy rode the big roller coaster for me at Disneyworld and screamed! I hope to get to Elitch Gardens in Denver this spring - Jody are you listening? Water World maybe when it gets warmer.) I was too busy being the village idiot to remember to call the insurance company last week and get pre-authorization for this new treatment, but we were able to handle it this morning. I had to be a pain in the ass to several people to get it done. Not the smoothest of mornings, but it'll be better next time. Robert missed City Council meeting. I wanted to go tonight as they were talking about going "Home Rule". As former City Treasurer, I would like to see this passed. I also wanted to encourage a party to sweep Main Street.
SOME REQUESTS FROM ME
This chemo will give me fatigue, nausea, and diarrhea. But I figure that's no reason to lie in bed and complain. You may see me out, but if I run in the bathroom all the sudden, you'll understand.
Also, if I am sleeping, I will try to remember to disconnect the phone. If I answer and I am groggy, just bear with me. If I need to go back to sleep I'll tell you. But sometimes it's good to have people to talk to. If anyone wants to come over and watch TV when I'm in those slow times, just holler. It might give Robert a break, and it'd be your day to watch me. I do have to more sensitive to infection now.
Two favors to ask everyone. Please do not send me jokes or unnecessary, sweet, little e-mails. My in-box is overflowing. Yes, they're nice, but I don't have time to read them or even figure out if I need to read them. I do love to get cards/post cards in the mail - P.O. Box 1884, Ouray, CO 81427. I think the art of letter writing has been lost.
Two, if you call, would you leave your number on the answering machine. You may save me a trip to walk in the other room. My legs really cramp up sometimes.
NO BLUE BELL!
I will also experience neuropathy (sp?) which is a side effect where you can't drink or have cold drinks, etc. I can't have ice cream for five days. At first I thought, Carol the infusion nurse (one of my favorites) said no ice cream ever again. I was especially bummed, as we are going south where they have "Blue Bell, the best ice cream in the country!" But it's just for five days. Little Creamery in Brenham, here I come.
Just up here in Colorado, not being a "girly-girl". I've got Hanz/Franz on my side.
Thanks you for your prayers. I pray fo us all.
Okay, I gotta to go take a pill.
Sincerly, Caroline
I may have cancer, but I'm having a good time!
Monday, March 19, 2007
Thursday, March 15, 2007
SLEDDING EGGS
Okay, I have much to update on the medical side, but I just have to tell this story first. This is that rich moment I mentioned in last Saturday's post - a lot of frustration came to a head for me.
I am losing some mobility in my left leg from the radiation on my hip bone. I don't really care, since my bone scan came back clear, and there's no sign of cancer. Since I'm on the steroids, I don't have any pain right now, but I've got pain meds as a back up when I'm off the steroids. If you watch the TV show, House, I sort of limp around like him and use a cane some. (If you don't watch House, you should. It's one of the best shows on TV. I'm totally hooked.) I even have a handicap sticker now for the car. What's really funny is we'll go someplace that has ten handicap places out front, and Robert will still park in the closest non-handicap place. And I'm like, park in the friggin' handicap spot - after all I've been through!
Things have really melted out in Ouray snow-wise, except of course, our front yard and the path to the car. I can get around town except for the first twenty feet outsdie my front door. It's slick, icy, on a hill, and I'm just terrified of falling. So last week, I had to come and go from the back door which we never use. It took me an hour to even find a key to that door, but I did find it.
So anyway, we had this major shopping expedition in Grand Junction last Friday after having chemo. We did Office Depot, PetSmart, Target, Vitamin Cottage, Michael's MJ Design, JoAnn's, Great Harvest Bread Company, and City Market (grocery store). Here I am "Miss Shop Local" hitting all the big box stores hoping I wouldn't run into anyone from Ouray, but hey, we'd already spent the gas money to get there. (We were back in GJ last Tuesday, and I shopped at several cool, independent places, which I'll report on later.) So many times after chemo Robert will say, do you want to stop here or there, and I'll say, let's just go home, I'm tired. Besides, we can get that stuff at home. I do usually have him stop for a dip cone at DQ.
So we had all this stuff to carry in on Friday night from the car. I just can't negotiate the yard, and I was feeling too impatient to have Robert back up the neighbor's driveway to go in the back door. Robert's telling me, don't worry, just let me get everything. I said I'll get the eggs - they're light. I was feeling so frustrated that I couldn't just grab bags and go up the hill as usual. I stomped up the neighbor's driveway and decided to cut across the deep snow in our yard on a lateral traverse. Well, the snow is knee deep, very stiff, and crunchy. It grabbed me and I just went over forward. I thought, Oh God, there go the eggs. It's all I have to handle, and I'm going to blow it. And in one of those slow motion kind of moments, the eggs went flying out of my arms. I thought they'll land in the snow and sink. But no, the surface of the snow is so hard, they went sliding down the hill. I thought, "Oh shit, they're organic and they cost an extra dollar." But the package for organic eggs has like these two double plastic layers, and they sledded down the hill and stopped. They didn't break.
Somehow, this made me feel like maybe I'm going to live longer than we all thought. I thought to myself, quit waiting to die, Caroline.
So I'm on steroids and I'm just going ninety miles an hour. I'm sure I'm driving people crazy, but I tell them I'm on drugs, and I'm not offended if they tell me I'm acting weird. It's kind of fun to go around a be the village idiot. My hands shake and sometimes I have the worst gas in the world, but I've decided this is no reason to just stay home in bed.
I met with two students from the film class today and we're going to start on a film to play at my funeral. I decided to start my planning funeral as I have too many control issues to let someone else do it. I figure if I'm ready, it won't happen. We've got the headstone thing done. I'll be doing a whole post on the plans later on. I AM SO JAZZED ABOUT DOING THIS FILM THING WITH THE SCHOOL! Thank you Nancy Nixon.
Last Sunday night we went to Tom & Linda Tyler's house for dinner. Jim & Chandriee Davis were in town from Estes Park and staying there. Jim used to work at the bookstore, and Chandriee & I worked at First National Bank together plus overlapped some at the Pinon Restaurant. (It's a small-town thing - you have these people you end up working with at different places.) Remind to tell you about setting my bangs on fire at the Pinon doing bananas foster.
Tuesday night, after another long day in GJ to see the doctor, we managed to go to the Elks and watch my team bowl. I've had to give up bowling for now, but I might be able to do it on an adaptive basis later on. (Or this leg thing may go away altogether - we don't know yet.) My team with Linda Tyler was bowling her husband's team with Tom Tyler. Plus Tom's team now has Warren Ruby, Ray Markey, and Phil Martinez - what a hoot. Bobby Morss has replaced me on The Harem. Thanks Bobby! You're a good fit for the girls.
Tonight, I did the silent auction for a joint fundraiser for the Mountain Rescue Team and the Museum. So last night, I stayed late at the bookstore late doing some cleaning and pulling some dead inventory for the auction. I put on the Beatles new Love CD from the Cirque de Soliel show (which is awesome) and cranked it up. I had this wonderful woman shopping in the store named Rudi, and we had fun talking. There's nothing like good music to get stuff done and some good girl conversation to boot.
Tonight, at the fundraiser, the crowd indulged me and let me auction some things at the verbal auction, and tell few stories. We were at the Western Hotel which used to house the Buen Tiempo, a very popular Mexican Restaurant where I moonlighted one winter (while I was City Treasurer!). I told you I was a workaholic.
I told a story about the night I had the whole back room at the Buen with like a 16-top, 10-top, 8 top, 6-top, and about ten other tables with no less than four at each. It was a Thursday night in the winter and we got slammed with a skeleton crew. No busser, rookie hostess, one bartender, manager's night off, second back-room waitress was a no-show. The waitress from the bar said you're on your own. Talk about dying and going to waitress hell. I thought, I can cry and give bad service, or smile and give bad service. So I smiled. I told people that we were in a crisis situation. I said get your shit together and be ready, cause I won't be back to your table for about 15 - 30 minutes. Nobody left, but I had a bunch of drink orders get cancelled.
MY NEXT PROJECT
Main Street is really full of gravel and dust currently which is driving us shop-owners nuts. Since Main Street is actually Highway 550, CDOT should maintain it, but they never do the sweeping. I keep telling my City Councilman husband will you please get Public Works to sweep the street. It looks like hell and someone could slip on the gravel. The street sweeper is broken at the City, and they're trying to get another town to come do it one day. I'm thinking that since I'm on steroids I'm just gonna go do it myself!
So I'm just up here in Colorado having a grand old time. I may have cancer, but I'm very happy. Life is good. I'm not leaving this earth until I'm ready. I've been talking to my liver, and I think I've got her on my side. (I've named my liver Luvera after a very special person in my life.) And I've been cussing those tumors out and told them they're not welcome anymore.
Thanks for keeping me alive with your prayers. Based on what the doctors tell me sometimes, that must be why I'm still here.
Sincerely, Caroline
P.S . The verbal auction brought in most the money, although we got about $300 on the silent auction. I feel good about that.
I am losing some mobility in my left leg from the radiation on my hip bone. I don't really care, since my bone scan came back clear, and there's no sign of cancer. Since I'm on the steroids, I don't have any pain right now, but I've got pain meds as a back up when I'm off the steroids. If you watch the TV show, House, I sort of limp around like him and use a cane some. (If you don't watch House, you should. It's one of the best shows on TV. I'm totally hooked.) I even have a handicap sticker now for the car. What's really funny is we'll go someplace that has ten handicap places out front, and Robert will still park in the closest non-handicap place. And I'm like, park in the friggin' handicap spot - after all I've been through!
Things have really melted out in Ouray snow-wise, except of course, our front yard and the path to the car. I can get around town except for the first twenty feet outsdie my front door. It's slick, icy, on a hill, and I'm just terrified of falling. So last week, I had to come and go from the back door which we never use. It took me an hour to even find a key to that door, but I did find it.
So anyway, we had this major shopping expedition in Grand Junction last Friday after having chemo. We did Office Depot, PetSmart, Target, Vitamin Cottage, Michael's MJ Design, JoAnn's, Great Harvest Bread Company, and City Market (grocery store). Here I am "Miss Shop Local" hitting all the big box stores hoping I wouldn't run into anyone from Ouray, but hey, we'd already spent the gas money to get there. (We were back in GJ last Tuesday, and I shopped at several cool, independent places, which I'll report on later.) So many times after chemo Robert will say, do you want to stop here or there, and I'll say, let's just go home, I'm tired. Besides, we can get that stuff at home. I do usually have him stop for a dip cone at DQ.
So we had all this stuff to carry in on Friday night from the car. I just can't negotiate the yard, and I was feeling too impatient to have Robert back up the neighbor's driveway to go in the back door. Robert's telling me, don't worry, just let me get everything. I said I'll get the eggs - they're light. I was feeling so frustrated that I couldn't just grab bags and go up the hill as usual. I stomped up the neighbor's driveway and decided to cut across the deep snow in our yard on a lateral traverse. Well, the snow is knee deep, very stiff, and crunchy. It grabbed me and I just went over forward. I thought, Oh God, there go the eggs. It's all I have to handle, and I'm going to blow it. And in one of those slow motion kind of moments, the eggs went flying out of my arms. I thought they'll land in the snow and sink. But no, the surface of the snow is so hard, they went sliding down the hill. I thought, "Oh shit, they're organic and they cost an extra dollar." But the package for organic eggs has like these two double plastic layers, and they sledded down the hill and stopped. They didn't break.
Somehow, this made me feel like maybe I'm going to live longer than we all thought. I thought to myself, quit waiting to die, Caroline.
So I'm on steroids and I'm just going ninety miles an hour. I'm sure I'm driving people crazy, but I tell them I'm on drugs, and I'm not offended if they tell me I'm acting weird. It's kind of fun to go around a be the village idiot. My hands shake and sometimes I have the worst gas in the world, but I've decided this is no reason to just stay home in bed.
I met with two students from the film class today and we're going to start on a film to play at my funeral. I decided to start my planning funeral as I have too many control issues to let someone else do it. I figure if I'm ready, it won't happen. We've got the headstone thing done. I'll be doing a whole post on the plans later on. I AM SO JAZZED ABOUT DOING THIS FILM THING WITH THE SCHOOL! Thank you Nancy Nixon.
Last Sunday night we went to Tom & Linda Tyler's house for dinner. Jim & Chandriee Davis were in town from Estes Park and staying there. Jim used to work at the bookstore, and Chandriee & I worked at First National Bank together plus overlapped some at the Pinon Restaurant. (It's a small-town thing - you have these people you end up working with at different places.) Remind to tell you about setting my bangs on fire at the Pinon doing bananas foster.
Tuesday night, after another long day in GJ to see the doctor, we managed to go to the Elks and watch my team bowl. I've had to give up bowling for now, but I might be able to do it on an adaptive basis later on. (Or this leg thing may go away altogether - we don't know yet.) My team with Linda Tyler was bowling her husband's team with Tom Tyler. Plus Tom's team now has Warren Ruby, Ray Markey, and Phil Martinez - what a hoot. Bobby Morss has replaced me on The Harem. Thanks Bobby! You're a good fit for the girls.
Tonight, I did the silent auction for a joint fundraiser for the Mountain Rescue Team and the Museum. So last night, I stayed late at the bookstore late doing some cleaning and pulling some dead inventory for the auction. I put on the Beatles new Love CD from the Cirque de Soliel show (which is awesome) and cranked it up. I had this wonderful woman shopping in the store named Rudi, and we had fun talking. There's nothing like good music to get stuff done and some good girl conversation to boot.
Tonight, at the fundraiser, the crowd indulged me and let me auction some things at the verbal auction, and tell few stories. We were at the Western Hotel which used to house the Buen Tiempo, a very popular Mexican Restaurant where I moonlighted one winter (while I was City Treasurer!). I told you I was a workaholic.
I told a story about the night I had the whole back room at the Buen with like a 16-top, 10-top, 8 top, 6-top, and about ten other tables with no less than four at each. It was a Thursday night in the winter and we got slammed with a skeleton crew. No busser, rookie hostess, one bartender, manager's night off, second back-room waitress was a no-show. The waitress from the bar said you're on your own. Talk about dying and going to waitress hell. I thought, I can cry and give bad service, or smile and give bad service. So I smiled. I told people that we were in a crisis situation. I said get your shit together and be ready, cause I won't be back to your table for about 15 - 30 minutes. Nobody left, but I had a bunch of drink orders get cancelled.
MY NEXT PROJECT
Main Street is really full of gravel and dust currently which is driving us shop-owners nuts. Since Main Street is actually Highway 550, CDOT should maintain it, but they never do the sweeping. I keep telling my City Councilman husband will you please get Public Works to sweep the street. It looks like hell and someone could slip on the gravel. The street sweeper is broken at the City, and they're trying to get another town to come do it one day. I'm thinking that since I'm on steroids I'm just gonna go do it myself!
So I'm just up here in Colorado having a grand old time. I may have cancer, but I'm very happy. Life is good. I'm not leaving this earth until I'm ready. I've been talking to my liver, and I think I've got her on my side. (I've named my liver Luvera after a very special person in my life.) And I've been cussing those tumors out and told them they're not welcome anymore.
Thanks for keeping me alive with your prayers. Based on what the doctors tell me sometimes, that must be why I'm still here.
Sincerely, Caroline
P.S . The verbal auction brought in most the money, although we got about $300 on the silent auction. I feel good about that.
Saturday, March 10, 2007
BE CARREFUL WHAT YOU WISH FOR!
Having cancer is not all bad. There are some up-sides. Whenever someone asked you what would you wish for if you had that Genie from the bottle, did you say something like win the lottery? Or for one wild impetuous night, to be the meat in an Antonio Banderas - Benecio Del Toro love sandwich. (Just kidding, my husband is all I can handle.) Or to be able to eat anything you want and not gain weight.
As I have said in the past, I spent most of my adult life dieting, mostly on Weight Watchers, and now, I can eat anything I want and not really gain weight. (I actually worked for Weight Watchers twice as a group leader.) I've been pretty lucky holding my weight stable. I've read that many cancer patients die of malnutrition rather than the cancer itself as they start losing weight.
Sometimes I don't have a big appetite, but I manage to get some calories in there somehow. I do "reverse Weight Watchers". Lots of bread. I have ice cream almost every night. Last night, we went to a Chinese buffet in Montrose on our way home from chemo. Usually, we choose that restaurant because I have been queasy and I get soup, rice, and one of the blander dishes with vegetables. They usually make money off me, but not last night. I went to every table and had something off each one. God, it was good! They had crab legs with drawn butter. I hadn't felt like fish or seafood in so long.
ANOTHER WISH COME TRUE
I used to be so busy and just enjoy accomplishing things, that it really pissed me off that I had to sleep at night. Well, not anymore. I can stay up all night. I do try to lie down and be still for a few hours and sometimes I do sleep. (By the way, in my last post, the reason I didn't go to sleep that night is that I took an Oxycodone instead of an Ambien CR by mistake.) A friend of mine told me that the CR makes her have wild dreams like me, but the regular Ambien works better. Does anyone have an opinion on this? Yep, I was a work-aholic. Maybe that's what gave me cancer. In addition to eating fiber, be sure to get your down time. I get lots of it now, and I'm relishing my leisure.
GOTTA RUN - MORE LATER ABOUT YESTERDAY'S CHEMO APPOINTMENT!
I just looked at the time and realized I need to get to the bookstore. Elwood is working today and I told him it's his day to "watch me". Robert & a friend went rockhounding in the "west end" of Montrose County today - a much needed respite for him I'm sure. Nothing makes him happier than to go dig for rocks and commune with nature.
I told Robert yesterday morning that if I was babbling on and driving him crazy, just to tell me, and I'd be quiet 'cause we know it's the steroids. I don't get offended - I know it's the meds and I know it's a good thing for him to ask me to time out. He did do this several times yesterday. As I get older, I don't like to listen anyone rattle on too long about anything, but when I was a younger woman, boy, could I blab my face off. (Just ask my ex, Lance.) I still have some girlfriends with which I have very productive blab-fests, but I don't like to talk like I did when I was younger, and I think that's a good thing - no more verbal diarrhea. I guess we do grow up.
Okay, gotta scoot. More later. Love ya. Bye!
Oh, I did have a rich moment last night that I have to tell you about. Later.
Just up here in Colorado, enjoying my steroids, but I will be glad to sleep again. Dr. Bergen said it was okay not to take the sleeping med. He said no one ever died from insomnia. (I guess unless you fell asleep at the wheel. But Robert said if you fell asleep it wouldn't be insomnia.)
Sincerely, Caroline
As I have said in the past, I spent most of my adult life dieting, mostly on Weight Watchers, and now, I can eat anything I want and not really gain weight. (I actually worked for Weight Watchers twice as a group leader.) I've been pretty lucky holding my weight stable. I've read that many cancer patients die of malnutrition rather than the cancer itself as they start losing weight.
Sometimes I don't have a big appetite, but I manage to get some calories in there somehow. I do "reverse Weight Watchers". Lots of bread. I have ice cream almost every night. Last night, we went to a Chinese buffet in Montrose on our way home from chemo. Usually, we choose that restaurant because I have been queasy and I get soup, rice, and one of the blander dishes with vegetables. They usually make money off me, but not last night. I went to every table and had something off each one. God, it was good! They had crab legs with drawn butter. I hadn't felt like fish or seafood in so long.
ANOTHER WISH COME TRUE
I used to be so busy and just enjoy accomplishing things, that it really pissed me off that I had to sleep at night. Well, not anymore. I can stay up all night. I do try to lie down and be still for a few hours and sometimes I do sleep. (By the way, in my last post, the reason I didn't go to sleep that night is that I took an Oxycodone instead of an Ambien CR by mistake.) A friend of mine told me that the CR makes her have wild dreams like me, but the regular Ambien works better. Does anyone have an opinion on this? Yep, I was a work-aholic. Maybe that's what gave me cancer. In addition to eating fiber, be sure to get your down time. I get lots of it now, and I'm relishing my leisure.
GOTTA RUN - MORE LATER ABOUT YESTERDAY'S CHEMO APPOINTMENT!
I just looked at the time and realized I need to get to the bookstore. Elwood is working today and I told him it's his day to "watch me". Robert & a friend went rockhounding in the "west end" of Montrose County today - a much needed respite for him I'm sure. Nothing makes him happier than to go dig for rocks and commune with nature.
I told Robert yesterday morning that if I was babbling on and driving him crazy, just to tell me, and I'd be quiet 'cause we know it's the steroids. I don't get offended - I know it's the meds and I know it's a good thing for him to ask me to time out. He did do this several times yesterday. As I get older, I don't like to listen anyone rattle on too long about anything, but when I was a younger woman, boy, could I blab my face off. (Just ask my ex, Lance.) I still have some girlfriends with which I have very productive blab-fests, but I don't like to talk like I did when I was younger, and I think that's a good thing - no more verbal diarrhea. I guess we do grow up.
Okay, gotta scoot. More later. Love ya. Bye!
Oh, I did have a rich moment last night that I have to tell you about. Later.
Just up here in Colorado, enjoying my steroids, but I will be glad to sleep again. Dr. Bergen said it was okay not to take the sleeping med. He said no one ever died from insomnia. (I guess unless you fell asleep at the wheel. But Robert said if you fell asleep it wouldn't be insomnia.)
Sincerely, Caroline
Tuesday, March 06, 2007
The Joy of Steroids
LEG GRADUALLY DOING BETTER
Boy, am I feeling better since I got back on daily steroids last week! I am definitely alive and almost kicking. Unfortunately, I do still have pain in my left leg, and I've had to give up bowling, at least for now. Better no new cancer and no bowling than the alternative. I can get around pretty good, but I can't entirely bend my thigh. I can carefully get down on the floor and back up if necessary. With the energy from the steroids, I am moving around a lot, which causes the leg to swell some. I had to spend some time this evening with the frozen peas on it (which makes a great ice pack). I am doing more in one hour now than I was doing all day before when I had so much fatigue.
I took one Ibuprofen today, but it didn't do anything. Guess it's gotta be two. I haven't used the Oxycodone since last Fridy due to the plugging up it causes. Sorry if my last post had too much information on constipation, but this blog is for other cholangio sufferers, and I think my candor can be helpful. However, I'll try to be less descriptive. "Pooty" problems come with the territory of cancer - all the best drugs either stop you up or cause the inverse.
We see Dr. Bergen this Friday to see if I can have chemo this week. Also, I see Dr. Kane from CU Med Center of Denver at the Montrose Oncology Center next Monday, just to check on any new procedures that might be available.
HOUSE PROJECTS
I'm having such better days. It's so nice to feel good again. I worked on cleaning our kitchen and frig last weekend, even rearranging the photos and magnets covering the refrigerator doors. Cleaning the kitchen causes one to think of so many people. So & so brought me this magnet from their vacation. This utensil was a Christmas present from a relative and I couldn't live without it. I rememer when I bought this bowl twenty years ago at the craft fair. So many wonderful memories you can hold in your hand. Anyway, we had quite a food museum going in the frig and the back reaches of some cupboards, and I am proud of my progess. We eat almost entirely at home now, so the kitchen needed to be put in order.
Before I got back on steroids, I took down the Christmas tree around February 24th. I know this will horrify some people, but we put our tree up really late, like on Christmas Eve, so if I get it down by Valentine's Day, I think I'm doing pretty good. (When I used to work so much, Easter was my goal.) I put the ornamnents in zip-loc bags with notes about where I think they all came from, like "I got this batch of ornaments in December 1993 when I was divorced and living in Denver. I bought all my gas that month at 7-11 to collect all five of these". I left a note at the top of the Christmas ornament box for Robert and Ian. I told them that based on the way I felt that day, I couldn't imagine still being alive at Christmas, and wished them love and Merry Christmas. But you know, I have new hope. Maybe I will make one more holiday.
PET SCANS, BODYWORKS
Last November when we drove to Las Vegas to spend time with my sisters, I picked up a Salt Lake City newspaper in Green River, Wyoming. (Mostly I was reading about the Jeffreys case.) But I noticed an ad for a PT Scan for about $650 at a hospital in SLC. My advice is that if you can afford it, get one, even if your insurance won't pay for it. It is like a low resolution CT scan of your whole body. And unfortunately, many things don't show up until it's too late. At least consider an ultrasound on your liver.
I can't remember if I mentioned this in the blog before or not, but while I was in Arizona in February, my sisters and I went to see the Bodyworks 3 exhibition in Phoenix. I was really afraid my sisters would get squeamish, but I was the one who had trouble looking at everything, It was very interesting and helpful to me. I got to see many livers with tumors. Some were cross-sections, one display had a torso of organs with an enlarged liver. I also got to see the vascular system of the liver which is an incredible looking tangle of wires. I may consider seeding in my arteries, but I don't know how they're ever sure if they're sending the seeds to the right place. They do arterial mapping. The night after I saw the exhibit, I dreamed that my liver had enlarged and I woke up looking pregnant. In the dream, I was yelling, "I have to call Dr. Bergen!"
INSOMNIA
Well, the down side to steroids is not sleeping. I took an Ambien CR at midnight and it's now 5:20 am and I just can't go to sleep. The brain is in high gear. I used to be like this all the time when I was working - toss & turn, worry about stuff, make lists, etc. The last two nights, the Ambien worked better although I only slept about six hours yesterday evening. Usually it knocks me out for 8 to 10 hours. I'm on six dexamethasone a day, and I think I need to try to get them into my body earlier in the day. Last night, I took a bunch of meds right at bed time. I read an article on Johnny Depp from a 2003 GQ that I'd been saving to read and finally got around to. When I fell asleep last night, I was seeing these tall, thin, black & white zombie cartoons like something out of a Tim Burton movie. But they didn't scare me. They were friendly and got sparkly when I talked to them. But I kept tossing in my sleep and telling them to go away.
It's a wild ride on the medications sometimes. Or maybe it's the pooty problems. I'm full of gas these days - fartin' like a jack-rabbit. I'm not sure what that means, but I think it has something to do with how they hop.
Just up here in Colorado, very glad to be alive despite the ups and downs. I love this world and I'm not ready to leave yet. Thanks for all your prayers.
Sincerely, Caroline
Boy, am I feeling better since I got back on daily steroids last week! I am definitely alive and almost kicking. Unfortunately, I do still have pain in my left leg, and I've had to give up bowling, at least for now. Better no new cancer and no bowling than the alternative. I can get around pretty good, but I can't entirely bend my thigh. I can carefully get down on the floor and back up if necessary. With the energy from the steroids, I am moving around a lot, which causes the leg to swell some. I had to spend some time this evening with the frozen peas on it (which makes a great ice pack). I am doing more in one hour now than I was doing all day before when I had so much fatigue.
I took one Ibuprofen today, but it didn't do anything. Guess it's gotta be two. I haven't used the Oxycodone since last Fridy due to the plugging up it causes. Sorry if my last post had too much information on constipation, but this blog is for other cholangio sufferers, and I think my candor can be helpful. However, I'll try to be less descriptive. "Pooty" problems come with the territory of cancer - all the best drugs either stop you up or cause the inverse.
We see Dr. Bergen this Friday to see if I can have chemo this week. Also, I see Dr. Kane from CU Med Center of Denver at the Montrose Oncology Center next Monday, just to check on any new procedures that might be available.
HOUSE PROJECTS
I'm having such better days. It's so nice to feel good again. I worked on cleaning our kitchen and frig last weekend, even rearranging the photos and magnets covering the refrigerator doors. Cleaning the kitchen causes one to think of so many people. So & so brought me this magnet from their vacation. This utensil was a Christmas present from a relative and I couldn't live without it. I rememer when I bought this bowl twenty years ago at the craft fair. So many wonderful memories you can hold in your hand. Anyway, we had quite a food museum going in the frig and the back reaches of some cupboards, and I am proud of my progess. We eat almost entirely at home now, so the kitchen needed to be put in order.
Before I got back on steroids, I took down the Christmas tree around February 24th. I know this will horrify some people, but we put our tree up really late, like on Christmas Eve, so if I get it down by Valentine's Day, I think I'm doing pretty good. (When I used to work so much, Easter was my goal.) I put the ornamnents in zip-loc bags with notes about where I think they all came from, like "I got this batch of ornaments in December 1993 when I was divorced and living in Denver. I bought all my gas that month at 7-11 to collect all five of these". I left a note at the top of the Christmas ornament box for Robert and Ian. I told them that based on the way I felt that day, I couldn't imagine still being alive at Christmas, and wished them love and Merry Christmas. But you know, I have new hope. Maybe I will make one more holiday.
PET SCANS, BODYWORKS
Last November when we drove to Las Vegas to spend time with my sisters, I picked up a Salt Lake City newspaper in Green River, Wyoming. (Mostly I was reading about the Jeffreys case.) But I noticed an ad for a PT Scan for about $650 at a hospital in SLC. My advice is that if you can afford it, get one, even if your insurance won't pay for it. It is like a low resolution CT scan of your whole body. And unfortunately, many things don't show up until it's too late. At least consider an ultrasound on your liver.
I can't remember if I mentioned this in the blog before or not, but while I was in Arizona in February, my sisters and I went to see the Bodyworks 3 exhibition in Phoenix. I was really afraid my sisters would get squeamish, but I was the one who had trouble looking at everything, It was very interesting and helpful to me. I got to see many livers with tumors. Some were cross-sections, one display had a torso of organs with an enlarged liver. I also got to see the vascular system of the liver which is an incredible looking tangle of wires. I may consider seeding in my arteries, but I don't know how they're ever sure if they're sending the seeds to the right place. They do arterial mapping. The night after I saw the exhibit, I dreamed that my liver had enlarged and I woke up looking pregnant. In the dream, I was yelling, "I have to call Dr. Bergen!"
INSOMNIA
Well, the down side to steroids is not sleeping. I took an Ambien CR at midnight and it's now 5:20 am and I just can't go to sleep. The brain is in high gear. I used to be like this all the time when I was working - toss & turn, worry about stuff, make lists, etc. The last two nights, the Ambien worked better although I only slept about six hours yesterday evening. Usually it knocks me out for 8 to 10 hours. I'm on six dexamethasone a day, and I think I need to try to get them into my body earlier in the day. Last night, I took a bunch of meds right at bed time. I read an article on Johnny Depp from a 2003 GQ that I'd been saving to read and finally got around to. When I fell asleep last night, I was seeing these tall, thin, black & white zombie cartoons like something out of a Tim Burton movie. But they didn't scare me. They were friendly and got sparkly when I talked to them. But I kept tossing in my sleep and telling them to go away.
It's a wild ride on the medications sometimes. Or maybe it's the pooty problems. I'm full of gas these days - fartin' like a jack-rabbit. I'm not sure what that means, but I think it has something to do with how they hop.
Just up here in Colorado, very glad to be alive despite the ups and downs. I love this world and I'm not ready to leave yet. Thanks for all your prayers.
Sincerely, Caroline
Friday, March 02, 2007
Can You Say Radiation Myositis?
I'm sorry I haven't posted more, but I have really been laid up this week, mostly with pain in my left leg in the area where I had radiation. I've also had the worst constipation I've ever experienced, despite taking stool softeners, laxatives, eating prunes, drinking fluids. I was reluctant to take my pain medication, Oxycodone, as it causes the constipation. I was getting cramps from the laxatives and had intense bloating (you know how cranky that makes us gals). I had been told to take Ibuprofen sparingly and try to stay off it for one or two days a week.
Last night I was in tears on the toilet. I had not shat for four days. My leg hurt so bad that Robert had to help me get up and downstairs and into bed by picking up my leg up for me. I took some Ibuprofen early in the day even though it was supposed to be a day off, but it had already worn off. I cried to my husband Robert, "I'm in so much pain I can barely walk, and I'm full of sh_t!" So he gave me some more Ibuprofen, and we found a solution (by Mr. Fleet) to move the concrete lodged somewhere in my intestines. I was grateful we didn't have to use dynamite!
I had an MRI today in Grand Junction, the first one I've ever had. We found the cause of the leg pain, which is very rare - "radiation myositis" induced by recall phenomenon. Apparently, gemcitabine (Gemzar) can cause a recall reaction of radiation side effects, even ones not experienced during the radiation itself. Dr. Bergen said there was a remote possibility I'd get the radiation sunburn once I started back on Gemzar. (I didn't ever get the radiation "burn, nor sore muscles.) There have been so few cases of the inflamed muscles from radiation recall, they're not exactly sure how to treat it. I'm going back on steroids to reduce inflammation. (Look out, Robert, I'll want to work on 17 projects at once, plus rearrange all the furniture in the house.) I can stay with the Oxycodone and have a new Rx for a different laxative. And I can stay on Ibuprofen as described above.
Needless to say, we were so relieved today to find out that the pain was not the result of the cancer spreading. Dr. Bergen and Nurse Amy were very happy. I had been feeling so bad physically that I was afraid/depressed that I'd never pull out of it, but now I have hope again. We are planning to go on a trip later this month to a book show in Austin, Texas and to see Robert's family in Mississippi, and I think we'll be able to do that now.
I didn't bowl this week, and it looks like I may have to give that up. The pain really came on last weekend after I bowled on Friday night.
So that is it for now. Thank you, God! I'm going to try to get some sleep despite getting an infusion of steroids in my port today. Thanks to my husband Robert who has taken such good care of me when I've been so incapacitate these past few weeks. You rock, honey!
Just up here in Colorado looking forward to Spring!
Sincerely, Caroline
Last night I was in tears on the toilet. I had not shat for four days. My leg hurt so bad that Robert had to help me get up and downstairs and into bed by picking up my leg up for me. I took some Ibuprofen early in the day even though it was supposed to be a day off, but it had already worn off. I cried to my husband Robert, "I'm in so much pain I can barely walk, and I'm full of sh_t!" So he gave me some more Ibuprofen, and we found a solution (by Mr. Fleet) to move the concrete lodged somewhere in my intestines. I was grateful we didn't have to use dynamite!
I had an MRI today in Grand Junction, the first one I've ever had. We found the cause of the leg pain, which is very rare - "radiation myositis" induced by recall phenomenon. Apparently, gemcitabine (Gemzar) can cause a recall reaction of radiation side effects, even ones not experienced during the radiation itself. Dr. Bergen said there was a remote possibility I'd get the radiation sunburn once I started back on Gemzar. (I didn't ever get the radiation "burn, nor sore muscles.) There have been so few cases of the inflamed muscles from radiation recall, they're not exactly sure how to treat it. I'm going back on steroids to reduce inflammation. (Look out, Robert, I'll want to work on 17 projects at once, plus rearrange all the furniture in the house.) I can stay with the Oxycodone and have a new Rx for a different laxative. And I can stay on Ibuprofen as described above.
Needless to say, we were so relieved today to find out that the pain was not the result of the cancer spreading. Dr. Bergen and Nurse Amy were very happy. I had been feeling so bad physically that I was afraid/depressed that I'd never pull out of it, but now I have hope again. We are planning to go on a trip later this month to a book show in Austin, Texas and to see Robert's family in Mississippi, and I think we'll be able to do that now.
I didn't bowl this week, and it looks like I may have to give that up. The pain really came on last weekend after I bowled on Friday night.
So that is it for now. Thank you, God! I'm going to try to get some sleep despite getting an infusion of steroids in my port today. Thanks to my husband Robert who has taken such good care of me when I've been so incapacitate these past few weeks. You rock, honey!
Just up here in Colorado looking forward to Spring!
Sincerely, Caroline
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