We did our weekly trip to Grand Junction yesterday. My liver enzymes were a bit out of whack but only the tiniest bit. My hemoglobin was back down to 11.9, so I got a shot of Aranesp. I have to call tomorrow and get the results of my tumor marker.
I also attended the "Look Good, Feel Better" seminar sponsored by the American Cancer Society. If this is offered at your oncology center, I recommend that you take it. We did make-up and got a free bag of cosmetics donated by various companies including Chanel, Clinique, Estee Lauder, Avon, etc. I was told that one of the Chanel lipsticks I got was worth $50. We also tried on hats and wigs. Most of the women in the group were bald. My hair keeps thinning, and I don't know if it will eventually all come out or not. It is actually quite curly in the back. I did take a wig that a beautician styled on me. It's short and blond and curly, but Robert said it looked gray out in the sunlight and he didn't like it. So I'll probably return it. In the make-up session, they talked about how you have to be careful not to get bacteria in your make-up or facial products since we're more susceptible to infection while on chemo. I hadn't thought about that.
Driving home from Grand Junction yesterday afternoon, I had fallen asleep and Robert woke me up as we were driving into Montrose. He said, "Caroline, you have to see this." The wind was blowing like crazy and there were tumbleweeds all over the road and some of them were huge. I took a couple pictures - don't know if they'll turn out. It was surreal. Then we went to the grocery store, and when we came out, it was a blizzard. So we drove home in blowing snow. It snowed most of today, but it's supposed to be warm this weekend. Yea!
I bowled Tuesday night - 97, 81, and 101. We won all three games and the overall score. We are 7 wins, 5 losses after three rounds. There's hope for us! My hip hurt and I'm having to adapt to standing up straight and hurling the ball. But I got better at it by the third game.
I'll have my CT and bone scans next week. I hope to God they don't find cancer in my bone, but the pain isn't going away and isn't responding to Ibuprofen or Tylenol like it before. It could be the Aranesp causing bone pain and bursitis. Anyway, it'll be good to find out. I worry that all the tumors in my liver will have grown together, and they'll tell me I have a "football" in there. But with the blood work being improved and the tumor marker trending down, we're hoping that won't be the case.
Just up here in Colorado hoping the snow melts this weekend.
Sincerely, Caroline
Thursday, October 26, 2006
Monday, October 23, 2006
Bloodwork Mostly Good Last Week
We saw Dr. Bergen last Wednesday, and I also got to visit with the new dietician at my cancer center. I've been keeping a food journal that I'm going to take her so she can review it. I'm also reading a book called Nature's Cancer Fighting Foods by Verne Varona which I think is very good. The dietician didn't recommend it, I just found it when I was doing some book orders, but it does reflect some things that she told me.
My liver enzymes were either normal or close to normal last week. Red blood cells were 12.1 (normal is 13) and platelets were normal. My tumor marker is back up to 2030. I have chemo again this Wednesday, then on November 1st, I'm having a CT scan and a bone scan. Dr. Bergen wants to make sure the pain in my hip isn't cancer. He said cholangio doesn't usually go to the bone, but we're going to check to be on the safe side. Otherwise, Dr. Bergen is encouraged about how I'm responding to the Xeloda.
When I go for treatment this Wednesday, I'm also going to a "Look Good, Feel Better" session put on by the American Cancer Society which is to give hair and make-up assistance. My hair has thinned a bunch, and I get really bad dark circles under my eyes.
I've been feeling a little tired the last two days from the chemo. I did have to go off Xeloda this weekend as usual due to the swelling in my feet and hands, but I hope to start back tomorrow.
We had snow two days last week, and it is really cold in the mornings. But the last few days it has been warm and sunny by the afternoon - we've been waking up to beautiful blue skies.
We had some friends from Colorado Springs (Terry & Alana Miller) come visit on Friday night and had a nice time catching up with them. Alana works for Barnes & Noble so we always have a lot to talk about. Last Wednesday, we had friends over to watch Woodstock and Alice's Restaurant. Nancy and John were both at Woodstock, and John was an extra in Alice's Restaurant. I didn't bowl last week as my team had a bye. I bowl tomorrow night and I hope the swelling in my hands won't hinder my form. I did my radio show yesterday and had a special guest, my neighbor, Dr. Sharon Krupa Sirotek, a psychologist. We did the "Dysfunctional Love Show". Lots of love songs are really about bad relationships, so we'd play a song and talk about whether we thought the relationship would work out or where the singer was in the break-up process. Sharon, I discovered yesterday, is the second cousin of Gene Krupa, a drummer who was very popular in the 1940's.
Well, guess I better close. As always, thanks for all the prayers, warm wishes , and positive thoughts.
Just up here in Colorado enjoying the quieter time of year.
Sincerely, Caroline
My liver enzymes were either normal or close to normal last week. Red blood cells were 12.1 (normal is 13) and platelets were normal. My tumor marker is back up to 2030. I have chemo again this Wednesday, then on November 1st, I'm having a CT scan and a bone scan. Dr. Bergen wants to make sure the pain in my hip isn't cancer. He said cholangio doesn't usually go to the bone, but we're going to check to be on the safe side. Otherwise, Dr. Bergen is encouraged about how I'm responding to the Xeloda.
When I go for treatment this Wednesday, I'm also going to a "Look Good, Feel Better" session put on by the American Cancer Society which is to give hair and make-up assistance. My hair has thinned a bunch, and I get really bad dark circles under my eyes.
I've been feeling a little tired the last two days from the chemo. I did have to go off Xeloda this weekend as usual due to the swelling in my feet and hands, but I hope to start back tomorrow.
We had snow two days last week, and it is really cold in the mornings. But the last few days it has been warm and sunny by the afternoon - we've been waking up to beautiful blue skies.
We had some friends from Colorado Springs (Terry & Alana Miller) come visit on Friday night and had a nice time catching up with them. Alana works for Barnes & Noble so we always have a lot to talk about. Last Wednesday, we had friends over to watch Woodstock and Alice's Restaurant. Nancy and John were both at Woodstock, and John was an extra in Alice's Restaurant. I didn't bowl last week as my team had a bye. I bowl tomorrow night and I hope the swelling in my hands won't hinder my form. I did my radio show yesterday and had a special guest, my neighbor, Dr. Sharon Krupa Sirotek, a psychologist. We did the "Dysfunctional Love Show". Lots of love songs are really about bad relationships, so we'd play a song and talk about whether we thought the relationship would work out or where the singer was in the break-up process. Sharon, I discovered yesterday, is the second cousin of Gene Krupa, a drummer who was very popular in the 1940's.
Well, guess I better close. As always, thanks for all the prayers, warm wishes , and positive thoughts.
Just up here in Colorado enjoying the quieter time of year.
Sincerely, Caroline
Saturday, October 14, 2006
Tumor Marker Down, Bowling Score Up
My CA19-9 tumor marker was down to 1245 this week. Last week it was 2280 and the week before 1810. Week before that it was 1544, so this is the lowest for some time. A trend down is good.
I bowled Wednesday night: 91, 92, and 112. My handicap is 91 so that last game ended up being a 203. I really concentrated in the last game, plus I'd taken some Ibuprofen during the first game that took a while to kick in which alleviated some of the bursitis pain in my hip. I'm learning you don't have to throw so hard. A well-placed ten pound ball can get all or most of the pins. To pick up one spare pin, throw gently and it goes straighter.
Today is the "Vignettes of History" performance. My friend Toni asked for more info on Verena Jacobson whom I'm portraying. She was born here in 1907. Her maternal grandmother immigrated from Switzerland with two young daughters (one of which was Verena's mother Ida) after her husband died over there. She met Ami Massard in Salt Lake City and they married and moved to Ouray in the 1880's. Ida's younger brother, Frank Massard, was born in 1897 in Ouray and would be a close uncle to Verena, only 10 years her senior, and more like a big brother.
Verena's mother, Ida, married a mine engineer from Liberty Hill, Texas named Frederick Rucker in the early 1900's and had four daughters, Verena being the eldest.
Verena said the kids had to make their own entertainment growing up here. There was no TV, no radio (that came after WWI), no running water (had to go outside and pump it). There were 23bars and saloons on Main Street, so the kids weren't supposed to hang out there, and especially not on the two blocks of Second Street where the very active red light district was. Verena said they did a lot of hiking and had picnics in the hills as kids. They'd build a bonfire and roast weiners. The curfew bell would go off at 8pm and all youngsters freshman and below better get home. If the marshall took you home, your parents would ground you.
Uncle Frank and a partner opened a corner pharmacy along with the Isis Movie Theater next door which is where the Variety Store is now. Verena started working at the pharmacy as a young teen when she could barely see over the counter. She and her sister also worked at the theater next door taking tickets. The pharmacy was just a block up the hill from the red light district. Verena said some of those ladies would come in the store dressed very nicely (you would never know they were prostitutes) and were very polite - easy to wait on. They didn't mingle much with the rest of the town.
Verena went to college for two years after high school - there were only five students in her graduating class in Ouray. She attended Denver University for one year and then Western State in Gunnison for the second. She then took a test which enabled her to be a school teacher. She taught first for one year at a school on Log Hill, all twelve grades, and school only went June - October due to all the snow. Then she taught at the Piedmont School for three years. The kids there once put a snake in her desk drawer. Then she went to the school in the town of Sneffels up above the Camp Bird Mine and across from the Revenue Mine. It was very cold and snowy there and she was only able to get down to Ouray once in the winter - she walked down the 10 miles and 2,000 feet for Christmas, and then back up. The snow was packed on the road due to all the mule trains and teamsters hauling goods up and down from the mines. An avalanche came down the mountain once while she taught at Sneffels. They heard it coming and didn't have time to do anything. She told the children to cover their faces. She slide went around both sides of the school and filled it with snow and mist, but Verena and her four students (all from the Cook family) were fine.
Verena's sister married a man from Minnesota, Leonard Jacobson, in 1931. She had Verena come out the next summer to help when she was having a baby. Leonard's brother Julius started taking Verena to dances amd the movies, and they got married later that year. Julius died in 1960.
Verena came back to Ouray in 1971 to help in take care of Frank's wife and ended up staying and taking care of Frank as well. She got involved with the Presbyterian Church, Woman's Club, and the Museum. She wasn't afraid to go to a City Council meeting and let the mayor know exactly what she thought. Verena passed away earlier this year at age 98.
Just up here in Colorado, channeling the ghost of Verena!
Sincerely, Caroline
I bowled Wednesday night: 91, 92, and 112. My handicap is 91 so that last game ended up being a 203. I really concentrated in the last game, plus I'd taken some Ibuprofen during the first game that took a while to kick in which alleviated some of the bursitis pain in my hip. I'm learning you don't have to throw so hard. A well-placed ten pound ball can get all or most of the pins. To pick up one spare pin, throw gently and it goes straighter.
Today is the "Vignettes of History" performance. My friend Toni asked for more info on Verena Jacobson whom I'm portraying. She was born here in 1907. Her maternal grandmother immigrated from Switzerland with two young daughters (one of which was Verena's mother Ida) after her husband died over there. She met Ami Massard in Salt Lake City and they married and moved to Ouray in the 1880's. Ida's younger brother, Frank Massard, was born in 1897 in Ouray and would be a close uncle to Verena, only 10 years her senior, and more like a big brother.
Verena's mother, Ida, married a mine engineer from Liberty Hill, Texas named Frederick Rucker in the early 1900's and had four daughters, Verena being the eldest.
Verena said the kids had to make their own entertainment growing up here. There was no TV, no radio (that came after WWI), no running water (had to go outside and pump it). There were 23bars and saloons on Main Street, so the kids weren't supposed to hang out there, and especially not on the two blocks of Second Street where the very active red light district was. Verena said they did a lot of hiking and had picnics in the hills as kids. They'd build a bonfire and roast weiners. The curfew bell would go off at 8pm and all youngsters freshman and below better get home. If the marshall took you home, your parents would ground you.
Uncle Frank and a partner opened a corner pharmacy along with the Isis Movie Theater next door which is where the Variety Store is now. Verena started working at the pharmacy as a young teen when she could barely see over the counter. She and her sister also worked at the theater next door taking tickets. The pharmacy was just a block up the hill from the red light district. Verena said some of those ladies would come in the store dressed very nicely (you would never know they were prostitutes) and were very polite - easy to wait on. They didn't mingle much with the rest of the town.
Verena went to college for two years after high school - there were only five students in her graduating class in Ouray. She attended Denver University for one year and then Western State in Gunnison for the second. She then took a test which enabled her to be a school teacher. She taught first for one year at a school on Log Hill, all twelve grades, and school only went June - October due to all the snow. Then she taught at the Piedmont School for three years. The kids there once put a snake in her desk drawer. Then she went to the school in the town of Sneffels up above the Camp Bird Mine and across from the Revenue Mine. It was very cold and snowy there and she was only able to get down to Ouray once in the winter - she walked down the 10 miles and 2,000 feet for Christmas, and then back up. The snow was packed on the road due to all the mule trains and teamsters hauling goods up and down from the mines. An avalanche came down the mountain once while she taught at Sneffels. They heard it coming and didn't have time to do anything. She told the children to cover their faces. She slide went around both sides of the school and filled it with snow and mist, but Verena and her four students (all from the Cook family) were fine.
Verena's sister married a man from Minnesota, Leonard Jacobson, in 1931. She had Verena come out the next summer to help when she was having a baby. Leonard's brother Julius started taking Verena to dances amd the movies, and they got married later that year. Julius died in 1960.
Verena came back to Ouray in 1971 to help in take care of Frank's wife and ended up staying and taking care of Frank as well. She got involved with the Presbyterian Church, Woman's Club, and the Museum. She wasn't afraid to go to a City Council meeting and let the mayor know exactly what she thought. Verena passed away earlier this year at age 98.
Just up here in Colorado, channeling the ghost of Verena!
Sincerely, Caroline
Thursday, October 12, 2006
Scenes from a Happy Fall
Here are some pictures from a recent roll of film. The first one was taken last Tuesday after we got snow up high in the mountains - sorry for the telephone wires. The next one is from the Hot Springs Pool Park. Next is deer in our front yard. Then there's me having a slump day with my "kitty heaters" Dumplin' (the calico) and Biscuit (the yellow tabby) - sorry for the mess in the background. Then there's one of our new bench at the cemetary and the view across the valley.
CHEMO AND POSSIBLE BURSITIS
We went today to Grand Junction for chemo. Dr. Bergen thinks the pain in my left hip could be bursitis. He said Ibuprofen should help the pain (it does). My red blood cells were 11.9 (normal is 13), but I didn't have a shot for stimulating red blood cells. They don't like to give it if your red blood cells are over 12, and since I was close, we didn't do it. My platelets are slightly below normal. Several liver enzymes were out of range, but not by much. I think I got a bigger dose of Gemzar today. Also, I have been back on Xeloda since Monday night. My feet are tingling, so that means I need to stay off them as much as possible, plus rest is good for the bursitis.
My next CT scan is November 1st.
PERFORMANCE ON SATURDAY AFTERNOON
I am working on my part for the Museum Fundraiser on Saturday. I've been researching my character, Verena Jacobson. It is an honor to portray her. Hopefully, I'll have some pictures from the show. It will be held at the Wright Opera House which is in the first photo above.
I better get to bed. I had my blog all done and the computer did a time out, and I lost the whole thing. I did have steroids today, so I'm a bit awake.
Robert and I rented the documentary, Born Into Brothels, and we thought it was very good. We were riveted to the TV. We have rented the documentary Woodstock and are going to watch with some of the locals who were there. I currently have the sci-fi channel on, so Close Encounters of the Third Kind is playing. The spaceship just landed.
Up here in Colorado, embracing the meds.
Sincerely, Caroline
Sunday, October 08, 2006
Good Chemo Day, Bad Bowling Night
Before I jump into the latest update from the doctor and my bowling scores, I want to do a few "shout-outs" of appreciation.
The support from friends and family I have received is so heart-warming and sustaining - thank you so much! I'd like to thank my cousin Beverly Graves Chestnut in Falls City, Nebraska, for her many cards as well as from her fellow church members. Thank you for your prayers - I think it's helping. To my sister Suzie's friends from the Duncanville, Texas class of 1967, thanks for your letters and messages - Nina Maloney, Charmayne, Jan, Cookie, Katrina. Thanks to aunts & cousins both in Nebraska and Kansas City and down in Florida, too. One of the upsides of cancer is to be drawn closer to family. So many other friends from all over the country plus right here in Ouray - you've been great. And to my husband Robert and my sisters Suzie & Diane (and bro-in-law, Al), I can't tell you enough how you've helped me through this and how much I love you.
LAST DOCTOR'S VISIT
My blood chemistry was improved this week, except my tumor marker CA19-9 was up to 2280, up from 1800 the week before. Red blood cells were up almost to normal, so I didn't have an Aranass shot this time (to stimulate red blood cell production). Dr. Bergen says he is very encouraged about how my cancer is responding to the chemo. He also contacted Mayo Clinic about clinical trials, but it doesn't look like anything is open right now of interest. (Mayo does have the Avastin & Tarceva Phase II trial, so if any of you reading this are new cholangio patients, you may want to check that out.) Dr. Bergen and my surgeon at CU Med Center discussed some ablation methods that involve heating or freezing tumors or planting radioactive seeds in certain arteries. There's no evidence that any of those would extend life, and the procedures involve surgery, so for right now, we are not considering those. I have no desire to go through surgery again unless absolutely necessary.
I did get a bigger dose of Gemzar this week, and I'm feeling pretty good, except some pain in my abdomen and hip which could be side effects of the Xeloda and Araness. I have been taking my Xeloda in pill form each day, but I suspended it on Friday becasue my feet blistered up on me. I did a twelve hour day in the bookstore, and that usually will bring the foot problems on. It's getting better today, so I think I can go back to the Xeloda tomorrow. It's the Xeloda that we think is really doing the trick, so I try to stay on it as much as possible.
THE ELKS REFINISHED THE BOWLING LANES!
I bowled a 94, 92, and 81 in my three games on Wednesday night. I made a concerted effort to bowl the best I could, but the Elks had the lanes professionally resurfaced. I think they are still warped, but my ball just wouldn't go down the middle. I tried all kinds of thing, but to no avail. It's okay though, since I was setting my handicap. I wonder if they mounded up the middle boards a little bit with extra surfacing and that's why my ball would go left or right. Of course, it could be my floppy wrist. In the third game (the 81) I tried backing up and throwing the ball harder, but I had less control. My hip was hurting that night and I couldn't get as low as usual when releasing the ball. I did pick up one spare with a slight split that felt really good. Bottom line - it was so much fun to bowl again! (With the new smoking laws in Colorado, the Elks Lodge is nicer - the smokers have to go outside.)
I won't get to do my radio show today as I have a rehearsal for the "Vignettes of History" fashion show, a benefit for the local museum. I'm portraying Verena Jacobson who was born here in 1907. She just passed away this year. She taught school in Sneffels up by the Revenue Mine and had to walk to Ouray in the snow to be home on Christmas.
Last night was Oktoberfest here in Ouray and the winner of the jeep was a man from Dewey, Arizona who has been buying raffle tickets for 20 years at the Variety Store.
I'm almost done reading The Utes Must Go by Peter Decker, and I give it a thumbs up. It is a well-researched account of the political climate both of Colorado and the U.S. leading up to the Meeker Massacre and the subsequent expulsion of the Utes from Colorado.
Just up here in Colorado enjoying the very last days of fall. We're supposed to have snow on Wednesday. They say our winter is to be wet, but warmer than usual.
Sincerely, Caroline
The support from friends and family I have received is so heart-warming and sustaining - thank you so much! I'd like to thank my cousin Beverly Graves Chestnut in Falls City, Nebraska, for her many cards as well as from her fellow church members. Thank you for your prayers - I think it's helping. To my sister Suzie's friends from the Duncanville, Texas class of 1967, thanks for your letters and messages - Nina Maloney, Charmayne, Jan, Cookie, Katrina. Thanks to aunts & cousins both in Nebraska and Kansas City and down in Florida, too. One of the upsides of cancer is to be drawn closer to family. So many other friends from all over the country plus right here in Ouray - you've been great. And to my husband Robert and my sisters Suzie & Diane (and bro-in-law, Al), I can't tell you enough how you've helped me through this and how much I love you.
LAST DOCTOR'S VISIT
My blood chemistry was improved this week, except my tumor marker CA19-9 was up to 2280, up from 1800 the week before. Red blood cells were up almost to normal, so I didn't have an Aranass shot this time (to stimulate red blood cell production). Dr. Bergen says he is very encouraged about how my cancer is responding to the chemo. He also contacted Mayo Clinic about clinical trials, but it doesn't look like anything is open right now of interest. (Mayo does have the Avastin & Tarceva Phase II trial, so if any of you reading this are new cholangio patients, you may want to check that out.) Dr. Bergen and my surgeon at CU Med Center discussed some ablation methods that involve heating or freezing tumors or planting radioactive seeds in certain arteries. There's no evidence that any of those would extend life, and the procedures involve surgery, so for right now, we are not considering those. I have no desire to go through surgery again unless absolutely necessary.
I did get a bigger dose of Gemzar this week, and I'm feeling pretty good, except some pain in my abdomen and hip which could be side effects of the Xeloda and Araness. I have been taking my Xeloda in pill form each day, but I suspended it on Friday becasue my feet blistered up on me. I did a twelve hour day in the bookstore, and that usually will bring the foot problems on. It's getting better today, so I think I can go back to the Xeloda tomorrow. It's the Xeloda that we think is really doing the trick, so I try to stay on it as much as possible.
THE ELKS REFINISHED THE BOWLING LANES!
I bowled a 94, 92, and 81 in my three games on Wednesday night. I made a concerted effort to bowl the best I could, but the Elks had the lanes professionally resurfaced. I think they are still warped, but my ball just wouldn't go down the middle. I tried all kinds of thing, but to no avail. It's okay though, since I was setting my handicap. I wonder if they mounded up the middle boards a little bit with extra surfacing and that's why my ball would go left or right. Of course, it could be my floppy wrist. In the third game (the 81) I tried backing up and throwing the ball harder, but I had less control. My hip was hurting that night and I couldn't get as low as usual when releasing the ball. I did pick up one spare with a slight split that felt really good. Bottom line - it was so much fun to bowl again! (With the new smoking laws in Colorado, the Elks Lodge is nicer - the smokers have to go outside.)
I won't get to do my radio show today as I have a rehearsal for the "Vignettes of History" fashion show, a benefit for the local museum. I'm portraying Verena Jacobson who was born here in 1907. She just passed away this year. She taught school in Sneffels up by the Revenue Mine and had to walk to Ouray in the snow to be home on Christmas.
Last night was Oktoberfest here in Ouray and the winner of the jeep was a man from Dewey, Arizona who has been buying raffle tickets for 20 years at the Variety Store.
I'm almost done reading The Utes Must Go by Peter Decker, and I give it a thumbs up. It is a well-researched account of the political climate both of Colorado and the U.S. leading up to the Meeker Massacre and the subsequent expulsion of the Utes from Colorado.
Just up here in Colorado enjoying the very last days of fall. We're supposed to have snow on Wednesday. They say our winter is to be wet, but warmer than usual.
Sincerely, Caroline
Monday, October 02, 2006
Bowling and Chemo on Wednesday
My bowling league starts at the Elks on Wednesday night! I'm really looking forward to it. I only got to bowl a few weeks last fall before all this cancer stuff came up. I didn't get to do the "No-Tap" league last spring either. (In No-Tap, if you knock nine pins down on the first ball, it counts as a strike. I love that.) I also have chemo Wednesday so hopefully I won't be delayed getting to the Elks Club on Wednesday night. I'll get to bowl on steroids! (Before chemo, they give you a steroid which always gives me good energy for two days.)
Speaking of energy, I've been feeling better lately except for that pain in my lower left abdomen. I haven't been so tired, and the flu-like symptoms are gone. The pain in the abdomen is something I've had for 16 years. I've been told that it's scar tissue on my ovary, ovulation (not the case now!), spastic colon, or a cyst in my ovary which I've seen on an ultrasound. It was a perfectly round bubble. I could be a level if there was a window on my ovary. The cyst sometimes goes away. At first, I thought this pain was spastic colon when it came back recently, but after reading about it, I don't think so. I think it's the cyst in the ovary. Anyway, Tylenol has been helping that.
I don't think I'll try to do tap dancing this fall as much as I want to. The Xeloda makes my feet swell and get sore, and I just don't think that will work for me. (I have been religious about putting bag balm on my feet twice a day, plus on my hands and night and wearing gloves to bed. This has helped tremendously.) Tap class is up in Ridgway, and I'm into things that are closer to home. I just don't get to fling myself into life like I used to.
The Elks Club is half a block from the bookstore and two blocks from home. The bowling alley only has two lanes, and we have to hire local kids to do pinsetting. There are these old-fashioned lights over the lanes. It's like an antique bowling alley - the lodge itself is over a hundred years old. The lanes are warped which I like because sometimes I find the groove and bowl really well (for me). Also, I think the ball stays out of the gutters because of the warped lanes. My average used to be about 115. Since I haven't bowled in a year, I'll be lucky to start out over 100, but hey, that just means my handicap will be higer.
I have two 10-pound bowling balls. One I had especially drilled for me, the other I got from my neighbor (who is C.W. McCall's daughter-in-law) at a garage sale for$1.00. The dollar ball will curve if I throw it just right and hit the head pin at an angle. The other ball rolls straighter and is good for picking up spares. I tend to flip my little girly wrist so throwing a straight ball isn't easy for me.
I was in a writing workshop all weekend and got some good feedback about my memoir I'm working on about having cancer.
The weather was beautiful here this weekend and the fall colors are stil good, so we had lots of people in town. I have to work quite a bit at the store this week as our main employee, Elwood, is taking time off for his wife's knee-replacement surgery. I'm hoping all goes well for Roseana whose surgery is today.
So I better scoot. Happy Autumn to everyone! Just up here in Colorado excited about hurling those bowling balls.
Sincerely, Caroline
Speaking of energy, I've been feeling better lately except for that pain in my lower left abdomen. I haven't been so tired, and the flu-like symptoms are gone. The pain in the abdomen is something I've had for 16 years. I've been told that it's scar tissue on my ovary, ovulation (not the case now!), spastic colon, or a cyst in my ovary which I've seen on an ultrasound. It was a perfectly round bubble. I could be a level if there was a window on my ovary. The cyst sometimes goes away. At first, I thought this pain was spastic colon when it came back recently, but after reading about it, I don't think so. I think it's the cyst in the ovary. Anyway, Tylenol has been helping that.
I don't think I'll try to do tap dancing this fall as much as I want to. The Xeloda makes my feet swell and get sore, and I just don't think that will work for me. (I have been religious about putting bag balm on my feet twice a day, plus on my hands and night and wearing gloves to bed. This has helped tremendously.) Tap class is up in Ridgway, and I'm into things that are closer to home. I just don't get to fling myself into life like I used to.
The Elks Club is half a block from the bookstore and two blocks from home. The bowling alley only has two lanes, and we have to hire local kids to do pinsetting. There are these old-fashioned lights over the lanes. It's like an antique bowling alley - the lodge itself is over a hundred years old. The lanes are warped which I like because sometimes I find the groove and bowl really well (for me). Also, I think the ball stays out of the gutters because of the warped lanes. My average used to be about 115. Since I haven't bowled in a year, I'll be lucky to start out over 100, but hey, that just means my handicap will be higer.
I have two 10-pound bowling balls. One I had especially drilled for me, the other I got from my neighbor (who is C.W. McCall's daughter-in-law) at a garage sale for$1.00. The dollar ball will curve if I throw it just right and hit the head pin at an angle. The other ball rolls straighter and is good for picking up spares. I tend to flip my little girly wrist so throwing a straight ball isn't easy for me.
I was in a writing workshop all weekend and got some good feedback about my memoir I'm working on about having cancer.
The weather was beautiful here this weekend and the fall colors are stil good, so we had lots of people in town. I have to work quite a bit at the store this week as our main employee, Elwood, is taking time off for his wife's knee-replacement surgery. I'm hoping all goes well for Roseana whose surgery is today.
So I better scoot. Happy Autumn to everyone! Just up here in Colorado excited about hurling those bowling balls.
Sincerely, Caroline
Wednesday, September 27, 2006
Liver Enzymes Up, White Blood Cells Down
I had chemo yesterday afternoon and got to attend my cancer support group in its entirty in the morning. It was a really good session, and the women in the group are just wonderful.
My oncologist is off on Tuesday afternoon, and when my bloodwork came back with the enzymes up out of the normal range and the white blood cells down, the nurse had me see the on-call doctor. Also, I sometimes have a spastic colon and it has been kicking up lately. I have had some bone pain in my left thigh which may be from the Araness stimulating the bone marrow, or I may have pulled a muscle lifting some heavy bags on Sunday. My platelets are still above normal.
Anyway, I was cleared to have my Gemzar at a lower rate. I had gone back on my Xeloda on the 18th, but by the end of the week, I had tapered off due to my feet swelling. I spoke to the triage nurse this morning and she got me caught up on what to do next. I need to start back on the Xeloda which I did today - the swelling has gone down in my feet. My white blood cells weren't down enough to require medication. I'm to take some Tylenol or Ibuprofen for the leg pain. I took Ibuprofen, and actually it hurt more after that.
And now for some good news. My tumor marker was down to 1544 last week. It has been up over 2,000 for the last six weeks. It went back up to 1800+ this week, but that is consistent with the liver enzymes being up.
I see Dr. Bergen next Wednesday, and he says he's been in touch with Mayo Clinic so I'm anxious to know what he has to say about that.
I have been feeling better this week. Not so tired. My red blood cells were up this week which I think is the result of the Araness shots. Appetite is still good and weight has stayed remarkably steady - about 145 pounds. When my thigh hurts, it does hurt to walk.
I'm getting an Rx for a numbing cream to put on my port before they poke it each week. The ladies in the support group told me about it. The port is great, but it does feel like someone's sticking a thumb tack in you when they access the port. They said the cream keeps it from hurting when the nurse comes at you like pin-the-tail-on-the-donkey.
The weather has been beautiful the last few days - clear, warm, sunny. The snow didn't stunt the leaf colors very much, nor knock the leaves off the trees.
So I'm just up here enjoying the fall and getting back on those meds!
Thanks as always for all your prayers and support.
Sincerely, Caroline
My oncologist is off on Tuesday afternoon, and when my bloodwork came back with the enzymes up out of the normal range and the white blood cells down, the nurse had me see the on-call doctor. Also, I sometimes have a spastic colon and it has been kicking up lately. I have had some bone pain in my left thigh which may be from the Araness stimulating the bone marrow, or I may have pulled a muscle lifting some heavy bags on Sunday. My platelets are still above normal.
Anyway, I was cleared to have my Gemzar at a lower rate. I had gone back on my Xeloda on the 18th, but by the end of the week, I had tapered off due to my feet swelling. I spoke to the triage nurse this morning and she got me caught up on what to do next. I need to start back on the Xeloda which I did today - the swelling has gone down in my feet. My white blood cells weren't down enough to require medication. I'm to take some Tylenol or Ibuprofen for the leg pain. I took Ibuprofen, and actually it hurt more after that.
And now for some good news. My tumor marker was down to 1544 last week. It has been up over 2,000 for the last six weeks. It went back up to 1800+ this week, but that is consistent with the liver enzymes being up.
I see Dr. Bergen next Wednesday, and he says he's been in touch with Mayo Clinic so I'm anxious to know what he has to say about that.
I have been feeling better this week. Not so tired. My red blood cells were up this week which I think is the result of the Araness shots. Appetite is still good and weight has stayed remarkably steady - about 145 pounds. When my thigh hurts, it does hurt to walk.
I'm getting an Rx for a numbing cream to put on my port before they poke it each week. The ladies in the support group told me about it. The port is great, but it does feel like someone's sticking a thumb tack in you when they access the port. They said the cream keeps it from hurting when the nurse comes at you like pin-the-tail-on-the-donkey.
The weather has been beautiful the last few days - clear, warm, sunny. The snow didn't stunt the leaf colors very much, nor knock the leaves off the trees.
So I'm just up here enjoying the fall and getting back on those meds!
Thanks as always for all your prayers and support.
Sincerely, Caroline
Friday, September 22, 2006
Liver's Happy Again. A Foot of Snow Last Night.
I would have posted this morning, but we were without power until this afternoon due to a foot of snow that fell in town overnight. With the leaves still on the trees, the heavy, wet snow broke many tree limbs, and I'm sure took many power lines down with them. We didn't open the bookstore until about 2pm today. I would have posted yesterday, but I was in meetings all day for various things, so I am finally getting to the blog.
I spent the morning unpacking my bag from Denver, and moving summer clothes to the spare bedroom and moving sweaters to the front of the closet. Robert built a fire downstairs, but came upstairs and said his feet were cold. So we crawled in bed with the cats to stay warm and took a nap at lunch time. Robert had checked on the bookstore this morning and sent our employee home because the power was out. He came down again about 2pm to find that there was power on Main Street, but we didn't get it on at home until about 3pm.
Robert took me to chemo on Wednesday in Grand Junction. I was bracing for some bad news as I have felt so crummy lately and was off chemo last week, but my liver enzymes have fallen back into normal ranges and my platelets were actually ABOVE normal. I had been taking Tylenol or Ibuprofen almost everyday last week, and I try to get by with only one or two per pills per day. I didn't know if this would affect my blood chemistry, but apparently not. My red blood cells were still low, so being anemic may have contributed to the flu like symptoms last week. Anyway, we were pleasantly surprised at the results. I did get another shot of Araness to help the red blood cells.
I did look into some clinical trials and spoke to a woman at Mayo Clinic. She told me about an organization called The Emerging Med. They can do searches for clinical trials at no cost. They are also approved by the American Medical Association. Their phone number is 877-601-8601. They have a website at emergingmed.com.
We looked at the website Wednesday with Dr. Bergen. He was impressed with some of the people on their medical advisory board. Dr. Bergen said my bloodwork looks good enough that I could probably go off chemo for a month in order to get into a clinical trial, so we are weighing that option. We'd like to stick with the Xeloda since it seems to be working, but I may not have this opportunity again. Of particular interest is the Avastin & Tarceva trial which the lady from Mayo Clinic said they would be offering. She said she would call me back, but I haven't heard from her.
I have pretty much been told by both the Astra Zeneca people and Mayo Clinic people that I would not be eligible for the AZD2171 trial. (Different clinical trials are sponsored by either the drug comapany or Mayo Clinic.)
I have been feeling better since chemo on Wednesday. The steroids help, and the Araness may be working as well to get the red blood cells back up. I started back on Xeloda on Monday and am tolerating it pretty well.
So that is where I'm at. I made chicken green-chili soup last night, so it'll be nice to have a bowl of that tonight. I better run. I have a store full of people and books to shelve.
Just up here in Colorado, not quite ready for the snow yet. Hope it melts tomorrow! As always, thanks for your prayers and warm wishes!
Sincerely, Caroline
I spent the morning unpacking my bag from Denver, and moving summer clothes to the spare bedroom and moving sweaters to the front of the closet. Robert built a fire downstairs, but came upstairs and said his feet were cold. So we crawled in bed with the cats to stay warm and took a nap at lunch time. Robert had checked on the bookstore this morning and sent our employee home because the power was out. He came down again about 2pm to find that there was power on Main Street, but we didn't get it on at home until about 3pm.
Robert took me to chemo on Wednesday in Grand Junction. I was bracing for some bad news as I have felt so crummy lately and was off chemo last week, but my liver enzymes have fallen back into normal ranges and my platelets were actually ABOVE normal. I had been taking Tylenol or Ibuprofen almost everyday last week, and I try to get by with only one or two per pills per day. I didn't know if this would affect my blood chemistry, but apparently not. My red blood cells were still low, so being anemic may have contributed to the flu like symptoms last week. Anyway, we were pleasantly surprised at the results. I did get another shot of Araness to help the red blood cells.
I did look into some clinical trials and spoke to a woman at Mayo Clinic. She told me about an organization called The Emerging Med. They can do searches for clinical trials at no cost. They are also approved by the American Medical Association. Their phone number is 877-601-8601. They have a website at emergingmed.com.
We looked at the website Wednesday with Dr. Bergen. He was impressed with some of the people on their medical advisory board. Dr. Bergen said my bloodwork looks good enough that I could probably go off chemo for a month in order to get into a clinical trial, so we are weighing that option. We'd like to stick with the Xeloda since it seems to be working, but I may not have this opportunity again. Of particular interest is the Avastin & Tarceva trial which the lady from Mayo Clinic said they would be offering. She said she would call me back, but I haven't heard from her.
I have pretty much been told by both the Astra Zeneca people and Mayo Clinic people that I would not be eligible for the AZD2171 trial. (Different clinical trials are sponsored by either the drug comapany or Mayo Clinic.)
I have been feeling better since chemo on Wednesday. The steroids help, and the Araness may be working as well to get the red blood cells back up. I started back on Xeloda on Monday and am tolerating it pretty well.
So that is where I'm at. I made chicken green-chili soup last night, so it'll be nice to have a bowl of that tonight. I better run. I have a store full of people and books to shelve.
Just up here in Colorado, not quite ready for the snow yet. Hope it melts tomorrow! As always, thanks for your prayers and warm wishes!
Sincerely, Caroline
Thursday, September 14, 2006
Greetings from Denver
Robert & I are in Denver for two reasons. We have a booksellers trade show this week, plus Robert has a booth at the Denver Gem & Mineral Show. Normally, these two events don't fall on the same weekend, but this year they did. So we are dividing and conquering. It was during this book show last year when I first noticed some rather minor symptoms which made me think I might have gall stones. I first went to the doctor last year on September 28th. My life has been quite different since then.
I'm actually playing hooky from the book show at the moment. I should be downstairs at one of the educational seminars, but I'm feeling a little yucky - queasy with flu like symptoms. I probably didn't have enough food in my tummy when I took my morning meds. I've gone off the Xeloda again as my feet started swelling up, peeling, and hurting. I was up to 3/4 of the dosage. I didn't have my Gemzar infusion this week since we were going to be out of town.
We're staying at the Marriott in the Denver Tech Center and I'm enjoying our nice room - the book show is here at this hotel. I hadn't had a chance to check the cholangiocarcinoma.org website or update this blog, so I figured this is a good time to do it. Robert is out at the Merchandise Mart setting up his booth for coloradominerals.com, a website business he has for selling minerals. We're bummed that we had to split up this weekend.
I've been feeling "yucky" a lot lately. Last Sunday, I didn't do my radio show. When I got off work at the bookstore, I just went home and slept. I'm beginning to suspect that the effects of chemo are cumulative. When I first startedwith the Gemzar, I might have one or two days of feeling a little yucky, but now it's most of the week. The queasiness is getting closer to being nausea but not quite. Mostly, I'm just achy, sometimes cold, sometimes hot, headache, tired - like having the flu. Then my feet want to swell up and that can be slightly painful. However, I know compared to a lot chemo regimens, the side effects of mine aren't so bad. I'm actually beginning to like infusion days when I get my steroid pills because I feel good and have lots of energy the day of chemo and the day after. I'm learning that I need to schedule some down time when the slump comes.
Last Saturday, I had a booth at Lupita's Bizarre Bazaar which is a flea market in Ridgway, the town north of Ouray. It is a fun event, and I got to see lots of people. I made $100 selling odds and ends from around the house: hair-thingies (my hair has thinned and is extremely short - don't think I'll wear a ponytiail again); cologne (I just can't wear some fragances now as they make my stomach turn); purses that I love but never carry - I rarely change purses; make-up that came in an Estee Lauder or Clinique gift program (after they've sat in the bathroom for five years you figure you won't use them). The women were all over the cologne and make-up - it was gone in the first hour. I had a good time, but it probalby contributed to my being so tired the next day.
I found out some things about clinical trials, but I'll put that on my next post as some of that info is at home.
Driving over from Ouray to Denver yesterday, the aspens are about 1/3 golden and it was so pretty. I'm takng pictures of the deer at home and hope to post some pictures when I get the roll finished.
Thanks to everyone for your prayers and good wishes.
Just over here in Denver learning some new things about the independent bookstore business.
Sincerely, Caroline
I'm actually playing hooky from the book show at the moment. I should be downstairs at one of the educational seminars, but I'm feeling a little yucky - queasy with flu like symptoms. I probably didn't have enough food in my tummy when I took my morning meds. I've gone off the Xeloda again as my feet started swelling up, peeling, and hurting. I was up to 3/4 of the dosage. I didn't have my Gemzar infusion this week since we were going to be out of town.
We're staying at the Marriott in the Denver Tech Center and I'm enjoying our nice room - the book show is here at this hotel. I hadn't had a chance to check the cholangiocarcinoma.org website or update this blog, so I figured this is a good time to do it. Robert is out at the Merchandise Mart setting up his booth for coloradominerals.com, a website business he has for selling minerals. We're bummed that we had to split up this weekend.
I've been feeling "yucky" a lot lately. Last Sunday, I didn't do my radio show. When I got off work at the bookstore, I just went home and slept. I'm beginning to suspect that the effects of chemo are cumulative. When I first startedwith the Gemzar, I might have one or two days of feeling a little yucky, but now it's most of the week. The queasiness is getting closer to being nausea but not quite. Mostly, I'm just achy, sometimes cold, sometimes hot, headache, tired - like having the flu. Then my feet want to swell up and that can be slightly painful. However, I know compared to a lot chemo regimens, the side effects of mine aren't so bad. I'm actually beginning to like infusion days when I get my steroid pills because I feel good and have lots of energy the day of chemo and the day after. I'm learning that I need to schedule some down time when the slump comes.
Last Saturday, I had a booth at Lupita's Bizarre Bazaar which is a flea market in Ridgway, the town north of Ouray. It is a fun event, and I got to see lots of people. I made $100 selling odds and ends from around the house: hair-thingies (my hair has thinned and is extremely short - don't think I'll wear a ponytiail again); cologne (I just can't wear some fragances now as they make my stomach turn); purses that I love but never carry - I rarely change purses; make-up that came in an Estee Lauder or Clinique gift program (after they've sat in the bathroom for five years you figure you won't use them). The women were all over the cologne and make-up - it was gone in the first hour. I had a good time, but it probalby contributed to my being so tired the next day.
I found out some things about clinical trials, but I'll put that on my next post as some of that info is at home.
Driving over from Ouray to Denver yesterday, the aspens are about 1/3 golden and it was so pretty. I'm takng pictures of the deer at home and hope to post some pictures when I get the roll finished.
Thanks to everyone for your prayers and good wishes.
Just over here in Denver learning some new things about the independent bookstore business.
Sincerely, Caroline
Tuesday, September 05, 2006
Increasing Xeloda and Gemzar Slightly
Robert took me to Grand Junction for chemo today. I got to attend my support group as well where we discussed what we would do if we found out an asteroid would destroy the earth six months from now. I would like to travel, spend more time with family & friends, let someone else save the world, and get one more kitten.
My tumor marker from last week's blood test was down again to 2060. My platelets are back up the normal range - I've been telling them to get back up there plus I visualized my mother hugging me which I think helped. (When I play big band music on my oldies radio show, I tell my listeners that this is for my parents to dance to up in heaven.) My red blood cells were still down so the doctor ordered a shot of Araness (sp?). We increased the Gemzar up to 85% of normal. My liver enzymes creeped up a wee bit this week, so I'm increasing my Xeloda dosage to 75% of normal instead of 50%.
We are still looking into clinical trials for AZD2171, but the only one that I think that will take cholangiocarcinoma (CC) patients is in England which I'm not opposed to - after all, I do want to travel. I also found a clinical trial for Avastin and Tarceva. I know both a CC and a pancreatic cancer patient who have done well with Tarceva. This trial is in Denmark. That'd be cool. If I have to go off all chemo for a month before the trials, we're not so sure that would work - that I can afford that much time off the chemo.
We ordered a headstone for our plot at the cemetery in Ouray County and they are setting it tomorrow. It's actually a bench. We'll have a great view from our spot. We're both going to be cremated and they'll put our ashes in the legs of the bench. I told Robert if he remarried and died before his new wife, to ask her if I could have some of his ashes over in my plot. Hope she won't mind.
The aspen leaves are just beginning to turn, while other trees in town are getting quite yellow. The kids started back to school today and we passed groups of them walking to school as we headed out of town to Grand Junction. We have lots of mule deer that hang out on our street in Ouray and the fawns are losing their white spots. I'll try to get a picture on this blog.
Just up here in Colorado enjoying the last days of summer and talking to my body - the tumors, the chemo, the red blood cells and platelets. I think it helps.
Sincerely, Caroline
My tumor marker from last week's blood test was down again to 2060. My platelets are back up the normal range - I've been telling them to get back up there plus I visualized my mother hugging me which I think helped. (When I play big band music on my oldies radio show, I tell my listeners that this is for my parents to dance to up in heaven.) My red blood cells were still down so the doctor ordered a shot of Araness (sp?). We increased the Gemzar up to 85% of normal. My liver enzymes creeped up a wee bit this week, so I'm increasing my Xeloda dosage to 75% of normal instead of 50%.
We are still looking into clinical trials for AZD2171, but the only one that I think that will take cholangiocarcinoma (CC) patients is in England which I'm not opposed to - after all, I do want to travel. I also found a clinical trial for Avastin and Tarceva. I know both a CC and a pancreatic cancer patient who have done well with Tarceva. This trial is in Denmark. That'd be cool. If I have to go off all chemo for a month before the trials, we're not so sure that would work - that I can afford that much time off the chemo.
We ordered a headstone for our plot at the cemetery in Ouray County and they are setting it tomorrow. It's actually a bench. We'll have a great view from our spot. We're both going to be cremated and they'll put our ashes in the legs of the bench. I told Robert if he remarried and died before his new wife, to ask her if I could have some of his ashes over in my plot. Hope she won't mind.
The aspen leaves are just beginning to turn, while other trees in town are getting quite yellow. The kids started back to school today and we passed groups of them walking to school as we headed out of town to Grand Junction. We have lots of mule deer that hang out on our street in Ouray and the fawns are losing their white spots. I'll try to get a picture on this blog.
Just up here in Colorado enjoying the last days of summer and talking to my body - the tumors, the chemo, the red blood cells and platelets. I think it helps.
Sincerely, Caroline
Saturday, September 02, 2006
Liver Enzymes Up Slightly
I went for chemo last Thursday. First, I got my stitches taken out from the port implantation. The port does make things so much easier for blood draws and infusions - I'm so glad I had it done. My bloodwork was about the same as before. My red blood cells and platelets were up just a notch, but still low. So I got 75% of the normal Gemzar infusion.
My liver enzymes were up slightly. I've been taking Tylenol to deal with the achy, flu-like symptoms of chemo, yet it is hard on your liver, and Dr. Bergen said that could account for the slight bump. Aspirin and Ibuprofen are not options as they cause your platelets to drop and mine are running low.
We are looking into clinical trials for AZD2171 which is supposed to be the next generation of Avastin. Unfortunately, there doesn't seem to be anything offered in the States that a cholangiocarcinoma patient would be eligible for. However, there is a trial in England which is testing AZD2171 and high blood pressure side effects. We may also look into applying for compassionate use of AZD2171.
Robert & I had a quick trip over to Denver Thursday night. We had a delicious dinner at a vegetarian Asian restaurant with Robert's son. Then we watched the MTV Video Awards with Ian so he could explain to us who everyone was and whether he thought they were any good. We went to our mineral sale on Friday morning. They had a bunch of books, too, so we came back with a truckload of rocks and new titles for my used book section.
There's lots of people in Ouray for Labor Day. I'm at the bookstore, and we have a local author reception tomorrow. I invited six local authors and two others are attending as well.
I felt good the last two days which is typical as they give you steroids before the chemo. I had a hard time sleeping Thursday night and took a Benadryl to help, but it didn't do much. Today, I'm feeling my chemo slump, but I toook Tylenol at lunch and it helps. Kelsey, our young high school employee, worked today, and I was able to process a lot of the used books into inventory.
I will do chemo next week on Tuesday which means I can go to the Grand Junction support group again, and I'm looking forward to that!
Just up here in Colorado, talking to my platelets and red blood cells, telling them to get back up there!
Sincerely, Caroline
My liver enzymes were up slightly. I've been taking Tylenol to deal with the achy, flu-like symptoms of chemo, yet it is hard on your liver, and Dr. Bergen said that could account for the slight bump. Aspirin and Ibuprofen are not options as they cause your platelets to drop and mine are running low.
We are looking into clinical trials for AZD2171 which is supposed to be the next generation of Avastin. Unfortunately, there doesn't seem to be anything offered in the States that a cholangiocarcinoma patient would be eligible for. However, there is a trial in England which is testing AZD2171 and high blood pressure side effects. We may also look into applying for compassionate use of AZD2171.
Robert & I had a quick trip over to Denver Thursday night. We had a delicious dinner at a vegetarian Asian restaurant with Robert's son. Then we watched the MTV Video Awards with Ian so he could explain to us who everyone was and whether he thought they were any good. We went to our mineral sale on Friday morning. They had a bunch of books, too, so we came back with a truckload of rocks and new titles for my used book section.
There's lots of people in Ouray for Labor Day. I'm at the bookstore, and we have a local author reception tomorrow. I invited six local authors and two others are attending as well.
I felt good the last two days which is typical as they give you steroids before the chemo. I had a hard time sleeping Thursday night and took a Benadryl to help, but it didn't do much. Today, I'm feeling my chemo slump, but I toook Tylenol at lunch and it helps. Kelsey, our young high school employee, worked today, and I was able to process a lot of the used books into inventory.
I will do chemo next week on Tuesday which means I can go to the Grand Junction support group again, and I'm looking forward to that!
Just up here in Colorado, talking to my platelets and red blood cells, telling them to get back up there!
Sincerely, Caroline
Tuesday, August 29, 2006
Back on Xeloda, Tumor Marker Down
My tumor marker was down to 2180 last week. Two weeks ago it was 2818. It is still way above the normal range which is something like 10 - 50, but it has trended downward since I started Xeloda in late June, so we are encouraged.
I have been very tired since last Friday and have had some flu-like symptoms. Still, I worked all day Saturday. I said to myself, you have to do the bookstore today - just do it. A young girl in town named Kelsey who's in junior high came in to work and she was a big help. She ran the register and I was able to get a lot done. I also did my radio show on Sunday afternoon. Now that I'm on Xeloda, I think of the song by The Clash called "My Sharona", to which I sing "My Xeloda". I told my listeners it's a song to fight cancer by.
I started back on the Xeloda at half dose on Sunday. I knew if I were working in the bookstore all day on Saturday, that it might aggravate the hand-foot syndrome if I started sooner. So far, so good - my feet aren't swelling.
Today, I was really tired and had flu like symptoms, but I had to go into the bookstore at 2pm. I took some Tylenol and Immodium and felt much better this afternoon. Once I got to work I felt better - I think the over-the-counter meds kicked in. My appetite was really good tonight so I had a nice steak dinner.
I have chemo on Thursday morning at 8:15am. We'll leave from Grand Junction that day for Denver to attend a mineral sale Friday morning, then we'll head back home to Ouray afterwards. We'll get to see Robert's son Ian for dinner Thursday night. Ian graduated from Colorado State University last December with a degree in art and got a really good job in Denver last February. We are very proud of him. He graduated magna cum laude.
I am pooped and need to hit the hay. We have a meeting at 9:00 am to renew our lease at the bookstore.
Thanks again to everyone for all their support.
Just up here in Colorado enjoying some sunny weather. It finally quit raining here.
Sincerely, Caroline
I have been very tired since last Friday and have had some flu-like symptoms. Still, I worked all day Saturday. I said to myself, you have to do the bookstore today - just do it. A young girl in town named Kelsey who's in junior high came in to work and she was a big help. She ran the register and I was able to get a lot done. I also did my radio show on Sunday afternoon. Now that I'm on Xeloda, I think of the song by The Clash called "My Sharona", to which I sing "My Xeloda". I told my listeners it's a song to fight cancer by.
I started back on the Xeloda at half dose on Sunday. I knew if I were working in the bookstore all day on Saturday, that it might aggravate the hand-foot syndrome if I started sooner. So far, so good - my feet aren't swelling.
Today, I was really tired and had flu like symptoms, but I had to go into the bookstore at 2pm. I took some Tylenol and Immodium and felt much better this afternoon. Once I got to work I felt better - I think the over-the-counter meds kicked in. My appetite was really good tonight so I had a nice steak dinner.
I have chemo on Thursday morning at 8:15am. We'll leave from Grand Junction that day for Denver to attend a mineral sale Friday morning, then we'll head back home to Ouray afterwards. We'll get to see Robert's son Ian for dinner Thursday night. Ian graduated from Colorado State University last December with a degree in art and got a really good job in Denver last February. We are very proud of him. He graduated magna cum laude.
I am pooped and need to hit the hay. We have a meeting at 9:00 am to renew our lease at the bookstore.
Thanks again to everyone for all their support.
Just up here in Colorado enjoying some sunny weather. It finally quit raining here.
Sincerely, Caroline
Wednesday, August 23, 2006
Platelet and Red Blood Cells Low
We went to see the oncologist today in Grand Junction. I can't tell you how much I like my new port. The blood draw was so easy. My liver enzymes continue to look good - my liver is still happy, but my platelets were low for the first time and my hemoglobin was the lowest it's been ever (I think). My weight is holding steady, and my blood pressure was low - 94/59. I was really tired over the weekend. I didn't even do my radio show on Sunday. I was so tired when I got off work, I just came home and slept all afternoon.
They reduced the amount of my Gemzar by 25%. My feet are still somewhat swollen so I can't start the Xeloda yet, and when I do I'll go back on, it'll be at half the dosage. We may start the Avastin next month. It kind of depends on how I tolerate the Xeloda. Dr. Bergen is anxious for me to get back on the Xeloda as he feels it is making the difference.
I asked Dr. Bergen about Essaic tea and milk thistle. He said while I'm on chemo, he doesn't want to take a chance on any herbal remedies interfering with it.
I'm hoping to get back on the Xeloda this weekend, and I have another Gemzar infusion next week on Thursday.
I'm thinking about all the other cholangiocarcinoma patients I correspond with, and I'm hoping and praying that we all come out our illness or move through it as painlessly as possible.
I am pretty wiped out, so I'll end this now. Thanks for all the prayers, love, support, and good wishes! And my best wishes to you!
Just up here in Colorado, embracing the medications.
Sincerely, Caroline
They reduced the amount of my Gemzar by 25%. My feet are still somewhat swollen so I can't start the Xeloda yet, and when I do I'll go back on, it'll be at half the dosage. We may start the Avastin next month. It kind of depends on how I tolerate the Xeloda. Dr. Bergen is anxious for me to get back on the Xeloda as he feels it is making the difference.
I asked Dr. Bergen about Essaic tea and milk thistle. He said while I'm on chemo, he doesn't want to take a chance on any herbal remedies interfering with it.
I'm hoping to get back on the Xeloda this weekend, and I have another Gemzar infusion next week on Thursday.
I'm thinking about all the other cholangiocarcinoma patients I correspond with, and I'm hoping and praying that we all come out our illness or move through it as painlessly as possible.
I am pretty wiped out, so I'll end this now. Thanks for all the prayers, love, support, and good wishes! And my best wishes to you!
Just up here in Colorado, embracing the medications.
Sincerely, Caroline
Sunday, August 20, 2006
Feet Swollen - Xeloda Suspended
I got two and a half days on my recent round of Xeloda, but my feet got swollen and too tender to walk on, so Dr. Bergen told me to take a week off from the medication or until my feet are completely back to normal. My hands have been puffing up, too. This morning I couldn't get my wedding ring on. We had hoped to go four days with the Xeloda, but it just isn't gonna let me do it. That's okay, when there's side effects, we know the stuff is working.
Yesterday, I took a nice long nap in the afternoon. I have days where I just get really pooped out. I have a couple of incisions from the port implantation, and those will take about a week or so to heal up. I'm trying to stay off my feet and let the chemo do it's stuff.
We started a cancer support group here this week in Ouray. Four people came to our first meeting. We plan to meet once a month.
We've sure been having mushroom weather. Lots of rain and just the right conditions that there's tons of mushrooms in the mountains this year. I can't keep mushroom books in stock and the publishers and distributors are out as well. We bought several Colorado mushroom books at Barnes & Noble in Grand Junction last week just to have them since the mushroom festival was in Telluride this weekend.
Just up here in Colorado enjoying the last days of summer.
Sincerely, Caroline
Yesterday, I took a nice long nap in the afternoon. I have days where I just get really pooped out. I have a couple of incisions from the port implantation, and those will take about a week or so to heal up. I'm trying to stay off my feet and let the chemo do it's stuff.
We started a cancer support group here this week in Ouray. Four people came to our first meeting. We plan to meet once a month.
We've sure been having mushroom weather. Lots of rain and just the right conditions that there's tons of mushrooms in the mountains this year. I can't keep mushroom books in stock and the publishers and distributors are out as well. We bought several Colorado mushroom books at Barnes & Noble in Grand Junction last week just to have them since the mushroom festival was in Telluride this weekend.
Just up here in Colorado enjoying the last days of summer.
Sincerely, Caroline
Wednesday, August 16, 2006
A Happy Liver
I had a port implanted this morning, and we used it this afternoon for my Gemzar infusion. It was much easier than getting chemo through a vein in the arm as the Gemzar sometimes hurts as it is going in. Robert & I have named my port, "Portia".
I had a bad bout of hand-foot syndrome over the weekend which is caused by the oral chemo medication, Xeloda. I didn't get to see as much of the rock swap last Friday as I was hobbling around on sore feet. I still have symptoms, but my feet are much improved, so I started the Xeloda again yesterday. My feet are acting like they want to swell up again, so Dr. Bergen advised me to do four days on and two days off.
And now for the good news. The nurse pulled up my blood test results on the computer and said, "Is this really your blood work?" She said it had never looked so good. Usually, a bunch of items are flagged as being out of range and this week only one thing was high, but it was close to the top of the range. Dr. Bergen said this indicates my liver is happy. He felt my liver and said some of the enlargement has subsided as well. I did fall slightly below the anemic borderline again, but the liver enzymes are still improving. My weight is holding steady as well. They didn't have results on the tumor marker and one other thing they look at each week, but hope to have those results soon.
Thanks everyone for your prayers, love, thoughts, and positive energy. I think it's working.
Just up here in Colorado with a happy liver.
Sincerely, Caroline
I had a bad bout of hand-foot syndrome over the weekend which is caused by the oral chemo medication, Xeloda. I didn't get to see as much of the rock swap last Friday as I was hobbling around on sore feet. I still have symptoms, but my feet are much improved, so I started the Xeloda again yesterday. My feet are acting like they want to swell up again, so Dr. Bergen advised me to do four days on and two days off.
And now for the good news. The nurse pulled up my blood test results on the computer and said, "Is this really your blood work?" She said it had never looked so good. Usually, a bunch of items are flagged as being out of range and this week only one thing was high, but it was close to the top of the range. Dr. Bergen said this indicates my liver is happy. He felt my liver and said some of the enlargement has subsided as well. I did fall slightly below the anemic borderline again, but the liver enzymes are still improving. My weight is holding steady as well. They didn't have results on the tumor marker and one other thing they look at each week, but hope to have those results soon.
Thanks everyone for your prayers, love, thoughts, and positive energy. I think it's working.
Just up here in Colorado with a happy liver.
Sincerely, Caroline
Thursday, August 10, 2006
Mostly Good News
My scan and visit to the oncologist went well on Wednesday. My blood work continues to look good, and while my scan had "mixed responses", we are generally pleased with the results.
We got to look at my current scan compared to the last scan in May. Some of the tumors remained the same, some might have actually shrunk, some look less dense, and some did grow, but not by that much. My oncologist feels the Xeloda is really making the difference. He says these are the best results we could hope for. He keeps reminding me that I will not be cured, we're just hoping to increase my life span, to slow the disease progression down, and it looks like we're making steps in that direction.
I did have the infusion of Gemzar as well. I started back on the Xeloda last Sunday and should have taken my last dose tonight for the week, but my hand-foot syndrome is kicking up. My feet are red, swolen, sore, and peeling, so I decided not to take any more Xeloda for a few days.
I am having a port inserted next week. They usually have to poke me two to five times to draw blood and get my IV for chemo inserted. I'm very squeamish, so I'm ready to have the port. This enables them to easily access a vein near the collarbone. I can still go swimming or soaking in the hot springs with this. It has a slight risk of infection.
Dr. Bergen doesn't want to start the Avastin until the port has been in a week or two as it will also inhibit healing along with the two chemo drugs. Again, the risk of infection is small, but if it happens, it's hard to get it to healed.
I am no longer anemic. My blood counts had me above the borderline this week. I had a big steak dinner the night before the blood draw - don't know it helps, but I've been adding more red meat to my diet. I need to call and get the results of my tumor marker. Weight is still good, down a pound, and no temperature. However, I felt hot today, my face was flushed, and my feet got red and sore. These side effects mean the chemo is working. Also had a bout of the D-word.
We are headed tomorrow to Buena Vista for the Contin-tail (a tail gate rock swap on the Continental Divide). I have never been to this outdoor rock swap before so I am looking forward to it. Unfortunately, we don't have any help in our shops tomorrow night, so we'll have to come racing home.
This week on my radio show, I am doing a program to celebrate the 37th anniversary of Woodstock. The president of our Woman's Club was there, and she will be one of my guests to tell what it was like. She also has a cousin who was partners with Bill Graham in the Fillmore concert halls, so she got to go to a lot of concerts in the 60's and 70's. She was in the back row of a concert when Eric Clapton premiered Derek & the Dominoes. A guy came in late and sat down next to her, and after he left she realized it was Bob Dylan. Another man in Ouray who buys a Sunday paper each week at the bookstore also went to Woodstock, but found it so miserable after the first day that he left. He was also an extra in the film Alice's Restaurant. He is very shy and I'm having trouble talking him into doing the radio show. I told him just to come down to the station, sit in the back, and just yell out things in the background. I have also spoken to C.W. McCall (Convoy was his big hit in 70's during the CB craze, "Ten-Four, Rubber Duckie"). He lives here in town and he said he would do my show sometime.
All for now. Just up here in Ouray, trying to stay off my aging hippie feet and get the swelling to go down.
Go chemo, go chemo, go chemo!
Sincerely, Caroline
We got to look at my current scan compared to the last scan in May. Some of the tumors remained the same, some might have actually shrunk, some look less dense, and some did grow, but not by that much. My oncologist feels the Xeloda is really making the difference. He says these are the best results we could hope for. He keeps reminding me that I will not be cured, we're just hoping to increase my life span, to slow the disease progression down, and it looks like we're making steps in that direction.
I did have the infusion of Gemzar as well. I started back on the Xeloda last Sunday and should have taken my last dose tonight for the week, but my hand-foot syndrome is kicking up. My feet are red, swolen, sore, and peeling, so I decided not to take any more Xeloda for a few days.
I am having a port inserted next week. They usually have to poke me two to five times to draw blood and get my IV for chemo inserted. I'm very squeamish, so I'm ready to have the port. This enables them to easily access a vein near the collarbone. I can still go swimming or soaking in the hot springs with this. It has a slight risk of infection.
Dr. Bergen doesn't want to start the Avastin until the port has been in a week or two as it will also inhibit healing along with the two chemo drugs. Again, the risk of infection is small, but if it happens, it's hard to get it to healed.
I am no longer anemic. My blood counts had me above the borderline this week. I had a big steak dinner the night before the blood draw - don't know it helps, but I've been adding more red meat to my diet. I need to call and get the results of my tumor marker. Weight is still good, down a pound, and no temperature. However, I felt hot today, my face was flushed, and my feet got red and sore. These side effects mean the chemo is working. Also had a bout of the D-word.
We are headed tomorrow to Buena Vista for the Contin-tail (a tail gate rock swap on the Continental Divide). I have never been to this outdoor rock swap before so I am looking forward to it. Unfortunately, we don't have any help in our shops tomorrow night, so we'll have to come racing home.
This week on my radio show, I am doing a program to celebrate the 37th anniversary of Woodstock. The president of our Woman's Club was there, and she will be one of my guests to tell what it was like. She also has a cousin who was partners with Bill Graham in the Fillmore concert halls, so she got to go to a lot of concerts in the 60's and 70's. She was in the back row of a concert when Eric Clapton premiered Derek & the Dominoes. A guy came in late and sat down next to her, and after he left she realized it was Bob Dylan. Another man in Ouray who buys a Sunday paper each week at the bookstore also went to Woodstock, but found it so miserable after the first day that he left. He was also an extra in the film Alice's Restaurant. He is very shy and I'm having trouble talking him into doing the radio show. I told him just to come down to the station, sit in the back, and just yell out things in the background. I have also spoken to C.W. McCall (Convoy was his big hit in 70's during the CB craze, "Ten-Four, Rubber Duckie"). He lives here in town and he said he would do my show sometime.
All for now. Just up here in Ouray, trying to stay off my aging hippie feet and get the swelling to go down.
Go chemo, go chemo, go chemo!
Sincerely, Caroline
Tuesday, August 08, 2006
Live from Ouray - Last Thursday Night
This is what I look like when the nurse takes my blood at the oncology center.
Actually, this is a melodrama picture from the actual performance. In this scene, I have a sprained writst from signing autographs, my arm is in a sling, and I just got smacked by Wanda Ketchum's purse.
I also look like this when I think about how much housework I have to do at home (people who have been to my house can tell you it's horrifying) plus paperwork and other things to do for the bookstore.
More later, Caroline
Monday, August 07, 2006
Scenes from a Happy Summer
Here's some pictures from the melodrama, Taos, and with sisters and cousins in Ouray.My husband Robert took photos during the melodrama and I hope to post some of those later.
Upper left - Mary Pickaxe complete with pantaloons.
Upper right - Jody & me in Taos during the writing conference.
Middle left - Me in the middle in pink, my sister Diane just to the left, sister Suzie on right,
our cousins and Aunt Ruth from eastern Nebraska - nice of them to come all that way to see me in the melodrama. Also appreciate my cousins who came from Kansas City (Shirley, Anita, Jessica), brother-in-law Al from Albuquerque, and friend Diane King who came from Denver.Bottom left - Aracania Webb (locally known as Jill Mort) and Mary Pickaxe (me).
Wednesday this week is a big day for me. I've got a scan at 8:30 am in Grand Junction. Then a blood draw at 9:45am, then see the doctor at 1:00 pm with chemo after that. Dr. Bergen says we should be able to get an idea of the scan results by the afternoon,
although the complete report won't be ready yet. Also, I'm sure the scan will give us some direction on when to start the Avastin.Last week I was off chemo for the melodrama. I started my Xeloda again yesterday. I told Dr. Bergen he could make as sick as he wants to after the melodrama.
Must scoot - have friends in town that we're meeting for dinner.
Just up here in Colorado hoping for good scan results on Wednesday.
Sincerely, Caroline
Thursday, August 03, 2006
First Performance Was a Success!
Last night was our first of three performances of the melodrama. Things went quite well, and we had a full house.
At our last few rehearsals, we were still making mistakes or forgetting lines, and some of the gals were getting tense. This is my fifth melodrama, so I know it always feels disorganized and crazy in rehearsal, but it all comes together once we have an audience. There were a few flubs last night, but nothing major. At the dress rehearsal on Tuesday night, I went totally blank at my opening scene. I couldn't remember my first line which I have rehearsed a million times. Better to forget at dress rehearsal than at the actual performance.
I did make one mistake in my costume changes. I have one scene where I fall off the ship and then come on back on again all wet, covered in seaweed, etc. I have a really short time to change clothes, wigs, and get enough water on me to be dripping wet. I had gone off stage after the first part of the scene and started changing quickly into my wet clothes and then realized I hadn't fallen off the boat yet! I still had to do one more scene in regular costume. So I was frantically changing back into my regular clothes and managed to get dressed in time. They don't give me the dumb blonde parts for nothing.
I hope to have some pictures to put on the blog by tomorrow. My cousin took pictures last night, and we'll probably get some more this evening.
Just up here in Colorado enjoying my week off from chemo and having my family in town.
Sincerely,
Caroline
At our last few rehearsals, we were still making mistakes or forgetting lines, and some of the gals were getting tense. This is my fifth melodrama, so I know it always feels disorganized and crazy in rehearsal, but it all comes together once we have an audience. There were a few flubs last night, but nothing major. At the dress rehearsal on Tuesday night, I went totally blank at my opening scene. I couldn't remember my first line which I have rehearsed a million times. Better to forget at dress rehearsal than at the actual performance.
I did make one mistake in my costume changes. I have one scene where I fall off the ship and then come on back on again all wet, covered in seaweed, etc. I have a really short time to change clothes, wigs, and get enough water on me to be dripping wet. I had gone off stage after the first part of the scene and started changing quickly into my wet clothes and then realized I hadn't fallen off the boat yet! I still had to do one more scene in regular costume. So I was frantically changing back into my regular clothes and managed to get dressed in time. They don't give me the dumb blonde parts for nothing.
I hope to have some pictures to put on the blog by tomorrow. My cousin took pictures last night, and we'll probably get some more this evening.
Just up here in Colorado enjoying my week off from chemo and having my family in town.
Sincerely,
Caroline
Friday, July 28, 2006
More Good News
Sorry it has taken me a while to post. This is one of the most hectic weeks of the summer. I'm in a writing workshop here in Ouray, plus rehearsing the melodrama.
The writing workshops are wonderful. I have a start on a memoir about having cancer, and I think a short piece can be lifted from it as an essay that I can submit for publication in the near future.
I have a bunch of family coming in next week for the melodrama, and it will be fun to have them here. Next week I won't do any chemo. I won't have the Gemzar and I won't take the Xeloda, because I want to feel good for the melodrama and all the family coming to visit.
I did find a great wig on the internet for my role as Mary Pickaxe. I'm also having a pair of pantaloons made. I'll try to get a picture to put on this blog next week of me in full costume.
CHEMO ON WEDNESDAY - MORE GOOD NEWS
At my blood draw this week, another one of my liver enzymes fell in the normal range. My weight is stable. I had no temperature this week (I did last week). My CA19-9 tumor marker was down a hundred points. Hemoglobin 12.0, up from 11.7 last week meaning I'm now only one point below the anemic borderline. Blood pressure was something like 98/67, somewhat on the low side for me, but the nurse still says is fine. Today should be one of my slump days after chemo. Last week, I had chills, slight fever, slight queasiness, and fatigue. Today, I'm mostly just tired. Again a wee bit of queasiness, but I don't feel like I have the flu like last week. I'm back on the Xeloda, the oral medication - having a slight bit of hand-foot syndrome. The oncologist feels it's the Xeloda that's making the difference. We're still thinking about the Avastin for the future.
NEXT SCAN IS AUGUST 9TH
I next see the oncologist on August 9th and we're going to do a CT scan in the morning before I get chemo in the afternoon. I'm sort of dreading the scan because I don't usually get good news. But I feel pretty good and despite what they say is going on in my liver, I just focus on what I want to accomplish in the short term. I'm hoping in August to get our house cleaned up and caught up on some bookkeeping. I also want to get working on this memoir in earnest.
Just up here in Colorado getting some good news and being dramatic.
Sincerely, Caroline
P.S. Lyle Lovett was incredible last week. The Subdudes only got to play for about 30 minutes due to problems with the sound system. Bummer.
The writing workshops are wonderful. I have a start on a memoir about having cancer, and I think a short piece can be lifted from it as an essay that I can submit for publication in the near future.
I have a bunch of family coming in next week for the melodrama, and it will be fun to have them here. Next week I won't do any chemo. I won't have the Gemzar and I won't take the Xeloda, because I want to feel good for the melodrama and all the family coming to visit.
I did find a great wig on the internet for my role as Mary Pickaxe. I'm also having a pair of pantaloons made. I'll try to get a picture to put on this blog next week of me in full costume.
CHEMO ON WEDNESDAY - MORE GOOD NEWS
At my blood draw this week, another one of my liver enzymes fell in the normal range. My weight is stable. I had no temperature this week (I did last week). My CA19-9 tumor marker was down a hundred points. Hemoglobin 12.0, up from 11.7 last week meaning I'm now only one point below the anemic borderline. Blood pressure was something like 98/67, somewhat on the low side for me, but the nurse still says is fine. Today should be one of my slump days after chemo. Last week, I had chills, slight fever, slight queasiness, and fatigue. Today, I'm mostly just tired. Again a wee bit of queasiness, but I don't feel like I have the flu like last week. I'm back on the Xeloda, the oral medication - having a slight bit of hand-foot syndrome. The oncologist feels it's the Xeloda that's making the difference. We're still thinking about the Avastin for the future.
NEXT SCAN IS AUGUST 9TH
I next see the oncologist on August 9th and we're going to do a CT scan in the morning before I get chemo in the afternoon. I'm sort of dreading the scan because I don't usually get good news. But I feel pretty good and despite what they say is going on in my liver, I just focus on what I want to accomplish in the short term. I'm hoping in August to get our house cleaned up and caught up on some bookkeeping. I also want to get working on this memoir in earnest.
Just up here in Colorado getting some good news and being dramatic.
Sincerely, Caroline
P.S. Lyle Lovett was incredible last week. The Subdudes only got to play for about 30 minutes due to problems with the sound system. Bummer.
Wednesday, July 19, 2006
Some Good News; Thanks to Jody for Going to the Conference
GOOD NEWS
I saw Dr. Bergen yesterday, and I will see him again next Wednesday. He said my blood test from yesterday showed that some of my liver enzymes, which had been elevated, had decreased substantially, one even falling back in the normal range. He was very excited, and needless to say, we were, too. The CA19-9 tumor marker was 3021, up from the 2880 last time, but still down from the 3600+ in June. He attributes the falling liver enzymes to the Xeloda, so I'm going to try to take that again, but only take it five days with two or three days off. He did caution me that all these blood counts will go up again someday, but for right now, we are encouraged.
My hemoglobin was 11.7, weight 66 kilograms (about 145 pounds), blood pressure 105/70. They only had to poke me twice to get my IV started. (I have banned Robert from standing over the nurses when they do this as I think it makes them nervous and harder for them to do. I'm trying to get braver about the blood draws and IV's. I may request a port at some point.) We also talked about looking for new clinical trials. And, we are keeping Davanat on the back burner and applying for compassionate use of that drug, which is in clinical trial testing, as a back-up plan.
So I had my Gemzar infusion yesterday and will start my Xeloda pills today. We also discussed Avastin which if we add to the mix, I asked if I could start it the second week of August because my schedule is very hectic the next two weeks. (More about that below.) But we're going to add back Xeloda for now, see how that is tolerated, and add Avastin if the Xeloda doesn't work out. They both work on reducing blood vessel growth.
WRITING WORKSHOPS PAST AND FUTURE, LYLE LOVETT & MEXICAN FOOD
I had such a wonderful time in Taos at the writing workshop last week that I have to wonder if that helped my blood work, too. I owe a debt of gratitude to my good friend Jody Curphy of Denver for driving me there and back and being there with me. I was a little nervous about being there alone and having some health issues come up. I had some minor stuff - swollen and painful knees and ankles, the D-word (diarrhea), mouth sores, a few other little things - which probably would have made me anxious and not as able to concentrate on writing. Jody and I also had a good time hanging out together, catching up on old times, and comparing notes on where we're at now in life. We met back in 1985 at an 8:00am Saturday morning speech class. We did go to the Sanctuary at Chimayo and I got some of the sacred dirt there, lit some candles, said some prayers. I rubbed the sacred dirt between my fingers to get all the clots out and visualized rubbing the tumors out of my liver.
We have a writing workshop next week in Ouray. I'm doing two creative non-fiction classes - one with Lee Martin, the other with Lee Gutkind. They are both marvelous writers and instructors. So I am very excited about that. I will have to miss one class to go to chemo, and one class on Saturday afternoon as we have tickets to see Lyle Lovett in Telluride on Saturday night.
I saw Lyle once at Red Rocks in Denver back in 1993 right after he'd married Julia Roberts, and of course, he was fabulous. (I think Julia screwed up when she let him go, but I'm sure there's another side to that story.) Robert discovered my Lyle Lovett cassette tapes once while he was on a trip to Denver and had nothing else to listen to, so he is a big fan as well. He really likes the song about "She's no lady, she's my wife." I'm not sure if he identifies with it because of his ex-wife, me, or both of us, but I tell myself it's the former. I love his song about the pony on the boat and also that one about nobody knows me like my baby - "I like flour tortillas." Actually, I prefer corn because I grew up on Tex Mex. We have good Mexican food out here, but it's different, and I have to confess I don't like Mexican food the way I used to - I guess you can get your full of it. (At the writing workshop in Taos we got fed a lot of New Mexican-Mexican food which may have caused my D-word.) But, when I get to Texas, I have to go to El Fenix or El Chico, and bury my face in a plate of enchiladas and cheese tacos. Great comfort food!
MELODRAMA
We are in heated rehearsals and preparations for the melodrama "Perils on the High Sea" coming up August 2nd - 4th. My sisters, brother-in-law, several cousins, possibly an aunt and a friend from Albuquerque are coming - a total of 10 - 12 people. I'm working on my subtext and motivations to portray Mary Pickaxe, as well my costume. If anyone has any thoughts on where I can get a Mary Pickford wig or even a Shirley Temple, let me know. We have a well-used blonde wig from when I was last in the melodrama and played nurse Ivy Dripp, but there's a scene where I fall off the ship this year and have to be on stage all wet so I think we'll need that wig for my drenched appearance.
Lots to look forward to in life. Keeps me going. Tumors be damned. I think Robert's mother and sister Jane may come later this summer, and we hope Robert's son Ian can drive over from Denver while they're here. By the way, Ian is doing really well and enjoying his new job in Denver and still doing some fine art as time permits.
Just up here in Colorado with new hope again, well immersed in my "Carolineland" with my acting and writing, grateful for my wonderful family, friends, and community. Life is good.
Sincerely, Caroline
I saw Dr. Bergen yesterday, and I will see him again next Wednesday. He said my blood test from yesterday showed that some of my liver enzymes, which had been elevated, had decreased substantially, one even falling back in the normal range. He was very excited, and needless to say, we were, too. The CA19-9 tumor marker was 3021, up from the 2880 last time, but still down from the 3600+ in June. He attributes the falling liver enzymes to the Xeloda, so I'm going to try to take that again, but only take it five days with two or three days off. He did caution me that all these blood counts will go up again someday, but for right now, we are encouraged.
My hemoglobin was 11.7, weight 66 kilograms (about 145 pounds), blood pressure 105/70. They only had to poke me twice to get my IV started. (I have banned Robert from standing over the nurses when they do this as I think it makes them nervous and harder for them to do. I'm trying to get braver about the blood draws and IV's. I may request a port at some point.) We also talked about looking for new clinical trials. And, we are keeping Davanat on the back burner and applying for compassionate use of that drug, which is in clinical trial testing, as a back-up plan.
So I had my Gemzar infusion yesterday and will start my Xeloda pills today. We also discussed Avastin which if we add to the mix, I asked if I could start it the second week of August because my schedule is very hectic the next two weeks. (More about that below.) But we're going to add back Xeloda for now, see how that is tolerated, and add Avastin if the Xeloda doesn't work out. They both work on reducing blood vessel growth.
WRITING WORKSHOPS PAST AND FUTURE, LYLE LOVETT & MEXICAN FOOD
I had such a wonderful time in Taos at the writing workshop last week that I have to wonder if that helped my blood work, too. I owe a debt of gratitude to my good friend Jody Curphy of Denver for driving me there and back and being there with me. I was a little nervous about being there alone and having some health issues come up. I had some minor stuff - swollen and painful knees and ankles, the D-word (diarrhea), mouth sores, a few other little things - which probably would have made me anxious and not as able to concentrate on writing. Jody and I also had a good time hanging out together, catching up on old times, and comparing notes on where we're at now in life. We met back in 1985 at an 8:00am Saturday morning speech class. We did go to the Sanctuary at Chimayo and I got some of the sacred dirt there, lit some candles, said some prayers. I rubbed the sacred dirt between my fingers to get all the clots out and visualized rubbing the tumors out of my liver.
We have a writing workshop next week in Ouray. I'm doing two creative non-fiction classes - one with Lee Martin, the other with Lee Gutkind. They are both marvelous writers and instructors. So I am very excited about that. I will have to miss one class to go to chemo, and one class on Saturday afternoon as we have tickets to see Lyle Lovett in Telluride on Saturday night.
I saw Lyle once at Red Rocks in Denver back in 1993 right after he'd married Julia Roberts, and of course, he was fabulous. (I think Julia screwed up when she let him go, but I'm sure there's another side to that story.) Robert discovered my Lyle Lovett cassette tapes once while he was on a trip to Denver and had nothing else to listen to, so he is a big fan as well. He really likes the song about "She's no lady, she's my wife." I'm not sure if he identifies with it because of his ex-wife, me, or both of us, but I tell myself it's the former. I love his song about the pony on the boat and also that one about nobody knows me like my baby - "I like flour tortillas." Actually, I prefer corn because I grew up on Tex Mex. We have good Mexican food out here, but it's different, and I have to confess I don't like Mexican food the way I used to - I guess you can get your full of it. (At the writing workshop in Taos we got fed a lot of New Mexican-Mexican food which may have caused my D-word.) But, when I get to Texas, I have to go to El Fenix or El Chico, and bury my face in a plate of enchiladas and cheese tacos. Great comfort food!
MELODRAMA
We are in heated rehearsals and preparations for the melodrama "Perils on the High Sea" coming up August 2nd - 4th. My sisters, brother-in-law, several cousins, possibly an aunt and a friend from Albuquerque are coming - a total of 10 - 12 people. I'm working on my subtext and motivations to portray Mary Pickaxe, as well my costume. If anyone has any thoughts on where I can get a Mary Pickford wig or even a Shirley Temple, let me know. We have a well-used blonde wig from when I was last in the melodrama and played nurse Ivy Dripp, but there's a scene where I fall off the ship this year and have to be on stage all wet so I think we'll need that wig for my drenched appearance.
Lots to look forward to in life. Keeps me going. Tumors be damned. I think Robert's mother and sister Jane may come later this summer, and we hope Robert's son Ian can drive over from Denver while they're here. By the way, Ian is doing really well and enjoying his new job in Denver and still doing some fine art as time permits.
Just up here in Colorado with new hope again, well immersed in my "Carolineland" with my acting and writing, grateful for my wonderful family, friends, and community. Life is good.
Sincerely, Caroline
Wednesday, July 12, 2006
Greetings from Taos
I am on vacation from chemo this week, but I am having some swelling in my ankles and knees. The Peterson Family blog said that low hemoglobin could be the culprit and mine has been just below the anemic line. My CA 19-9 tumor marker was back down to 2800 something last week. When I go back next week, I know Dr. Bergen wants to start Avastin, but I don't know how soon, I'm guessing the day of the appointment.
Otherwise, I feel pretty darn good and have a good appetite. In fact, I think I've gained some weight. I do have some pain in the joints from the swelling, some in the abdomen from the enlarged liver pressing on the liver's capsule or membrane. Or could it be the inner incision from the surgery or from the tumors? Anyway, we won't really know how the chemo is working until the next scan which Dr. Bergen wants to do after the next chemo cycle. He says the bloodwork also helps him monitor where we're at. My billirubin and liver enzymes have been okay. Some other blood chemistry related to the liver is up, and he's watching that. The tumor marker gives him some indication of disease progression but isn't entirely reliaable.
The writing conference is great! I had a screenwriting class last weekend and this week I'm in a beginning memoir class with Barbara Robinette Moss. Her memoir is Change Me Into Zeus's Daughter, and now she has a second one entitled Fierce. I've read the first one and it was so good. She is a wonderful instructor. In fact, I need to get back to my writing.
I went to Taos Pueblo on Monday, something I'd never done despite having once lived in New Mexico and having visited here many times. I said a little prayer in the Pueblo church for myself, othere cholangio patients, and for everyone I know. Then, I bought myself a few trinkets in the shops including a storyteller figurine to help inspire my writing.
Just here in Taos writing about my cancer experiences. Maybe I really will get a book written before I leave this world.
Sincerely, Caroline
Otherwise, I feel pretty darn good and have a good appetite. In fact, I think I've gained some weight. I do have some pain in the joints from the swelling, some in the abdomen from the enlarged liver pressing on the liver's capsule or membrane. Or could it be the inner incision from the surgery or from the tumors? Anyway, we won't really know how the chemo is working until the next scan which Dr. Bergen wants to do after the next chemo cycle. He says the bloodwork also helps him monitor where we're at. My billirubin and liver enzymes have been okay. Some other blood chemistry related to the liver is up, and he's watching that. The tumor marker gives him some indication of disease progression but isn't entirely reliaable.
The writing conference is great! I had a screenwriting class last weekend and this week I'm in a beginning memoir class with Barbara Robinette Moss. Her memoir is Change Me Into Zeus's Daughter, and now she has a second one entitled Fierce. I've read the first one and it was so good. She is a wonderful instructor. In fact, I need to get back to my writing.
I went to Taos Pueblo on Monday, something I'd never done despite having once lived in New Mexico and having visited here many times. I said a little prayer in the Pueblo church for myself, othere cholangio patients, and for everyone I know. Then, I bought myself a few trinkets in the shops including a storyteller figurine to help inspire my writing.
Just here in Taos writing about my cancer experiences. Maybe I really will get a book written before I leave this world.
Sincerely, Caroline
Wednesday, July 05, 2006
Xeloda Suspended, Avastin Coming, Headed to Taos
I had my seventh infusion of Gemzar on Monday and get next week off of chemo - yeah! I was taking Xeloda orally until this morning. I developed mouth sores and hand-foot syndrome. (It probably didn't help that I worked 13 hours yesterday in the bookstore although I tried to stay off my feet. The Fourth of July is one of our biggest retail days of the year, so I really needed to be there from open to close, but I did have some help, too.) Anyway, Dr. Bergen said that I should quit taking the Xeloda due to the side effects, but he has gotten Avastin approved by my insurance company which he wants to start when I resume chemo week after next. I believe it will be a drug delivered intraveneously as well. It's my understanding that it is used mostly for colon cancer. I'll find out more on July 18th.
I am headed to Taos, New Mexico for a writing workshop, and my good friend Jody (from Denver) is going to drive me there and stay with me during my week of classes. I'm taking beginning screenwriting and beginning memoir. I'm planning to work with the film class from Ouray High School next year on a film about my cancer experience. Robert will drive me to Salida on Friday, and we'll meet Jody there and have lunch with our friends Barb & Pete who live in Salida. I'm very grateful that Jody is willing to be my travelling companion.
I have had that queasy feeling somewhat today and some tiredness, but not as bad as in some past weeks. They took blood on Monday for the tumor marker, but as of this morning, they didn't have the results yet. Hemoglobin is back down to 11.7.
It's been raining here which is a good thing. The fireworks were beautiful last night.
Well, it's late and I have a million things to do tomorrow before I leave town. I will try to keep my blog updated while I'm gone next week.
Just up here in Colorado selling books - making money while the tourists are here!
Sincerely, Caroline
I am headed to Taos, New Mexico for a writing workshop, and my good friend Jody (from Denver) is going to drive me there and stay with me during my week of classes. I'm taking beginning screenwriting and beginning memoir. I'm planning to work with the film class from Ouray High School next year on a film about my cancer experience. Robert will drive me to Salida on Friday, and we'll meet Jody there and have lunch with our friends Barb & Pete who live in Salida. I'm very grateful that Jody is willing to be my travelling companion.
I have had that queasy feeling somewhat today and some tiredness, but not as bad as in some past weeks. They took blood on Monday for the tumor marker, but as of this morning, they didn't have the results yet. Hemoglobin is back down to 11.7.
It's been raining here which is a good thing. The fireworks were beautiful last night.
Well, it's late and I have a million things to do tomorrow before I leave town. I will try to keep my blog updated while I'm gone next week.
Just up here in Colorado selling books - making money while the tourists are here!
Sincerely, Caroline
Friday, June 30, 2006
Xeloda Added to "the Cocktail"
As in Bridget Jones Diary . . .
Weight: 65 kilograms (about 142 pounds)
Alcohol Consumption: 0, Cigarettes: None for a long time
Hemoglobin: 12.3, up from 11.7 last week (normal 13 - 16)
White blood cells and platelets are normal.
Tumor Marker CA19-9: 3358 (normal 0 - 37)
I had my sixth infusion of Gemzar (gemcitabine) this past Tuesday. My oncologist added Xeloda (capecitabin) to my chemotherapy regimen, which I started in pill form on Wednesday morning. The Xeloda has more side effects - I have a headache, heartburn, achy joints, more queasiness, and just really tired. My pattern with Gemzar seems to be that I feel fatigue on Thursday and Friday after chemo on Tuesday, but I come out of it on the weekend. The Xeloda is adding to those symptoms, but so far I've not had any of its more serious side effects (extreme nausea or diarrhea, hand-foot syndrome, mouth sores, fever) which requires suspension of the drug.
My oncologist said I could quit taking the Xeloda next week, as I have a vacation scheduled for July 7th - 14th. I am taking a writing workshop in Taos, NM. I have such a headache today, which is making me cranky, that I don't think I could drive or sit in a class or do much of anything. This morning when I woke up with it, I didn't want to move at all. My cat Biscuit and I lay in bed and watched the hummingbirds. We have a feeder just outside the bedroom window, and each time one would land, Biscuit would make a slight chatter so I'd look up and see the hummer. Biscuit is a yellow tabby that sort of looks like Jabba the Hut - she's a hefty gal - but very good company. Our other cat is Dumplin', a calico, somewhat standoffish, but affectionate in her own way.
We started melodrama practice on Wednesday night. I have a small, but funny part: Mary Pickaxe. Our performances are August 2nd, 3rd, and 4th at 7pm. This is one of those things that will keep me going.
I did just eat breakfast and took all my medicine including some Tylenol which I hope will help my headache. I have felt "foggy" the last two mornings. I hope this goes away because I've got so much to get done. The Fourth of July is coming up which is our busiest week of the year.
I feel like such a chemistry experiment with all the medications I'm taking, but sometimes I think we just have to "embrace the medication" and let it work for us. The morning pill box now includes: Xeloda, Zoloft, Kytril, Prilosec, Tylenol, green tea extract, a multi-vitamin (Flintstones for me), Omega 3, Co-Q-10, and B-6. Most of these are repeated at night.
Just up here in Colorado, embracing the meds, watching hummingbirds and mule deer grazing in the yard, memorizing lines, and waiting for this headache to wear off.
Sincerely, Caroline
Weight: 65 kilograms (about 142 pounds)
Alcohol Consumption: 0, Cigarettes: None for a long time
Hemoglobin: 12.3, up from 11.7 last week (normal 13 - 16)
White blood cells and platelets are normal.
Tumor Marker CA19-9: 3358 (normal 0 - 37)
I had my sixth infusion of Gemzar (gemcitabine) this past Tuesday. My oncologist added Xeloda (capecitabin) to my chemotherapy regimen, which I started in pill form on Wednesday morning. The Xeloda has more side effects - I have a headache, heartburn, achy joints, more queasiness, and just really tired. My pattern with Gemzar seems to be that I feel fatigue on Thursday and Friday after chemo on Tuesday, but I come out of it on the weekend. The Xeloda is adding to those symptoms, but so far I've not had any of its more serious side effects (extreme nausea or diarrhea, hand-foot syndrome, mouth sores, fever) which requires suspension of the drug.
My oncologist said I could quit taking the Xeloda next week, as I have a vacation scheduled for July 7th - 14th. I am taking a writing workshop in Taos, NM. I have such a headache today, which is making me cranky, that I don't think I could drive or sit in a class or do much of anything. This morning when I woke up with it, I didn't want to move at all. My cat Biscuit and I lay in bed and watched the hummingbirds. We have a feeder just outside the bedroom window, and each time one would land, Biscuit would make a slight chatter so I'd look up and see the hummer. Biscuit is a yellow tabby that sort of looks like Jabba the Hut - she's a hefty gal - but very good company. Our other cat is Dumplin', a calico, somewhat standoffish, but affectionate in her own way.
We started melodrama practice on Wednesday night. I have a small, but funny part: Mary Pickaxe. Our performances are August 2nd, 3rd, and 4th at 7pm. This is one of those things that will keep me going.
I did just eat breakfast and took all my medicine including some Tylenol which I hope will help my headache. I have felt "foggy" the last two mornings. I hope this goes away because I've got so much to get done. The Fourth of July is coming up which is our busiest week of the year.
I feel like such a chemistry experiment with all the medications I'm taking, but sometimes I think we just have to "embrace the medication" and let it work for us. The morning pill box now includes: Xeloda, Zoloft, Kytril, Prilosec, Tylenol, green tea extract, a multi-vitamin (Flintstones for me), Omega 3, Co-Q-10, and B-6. Most of these are repeated at night.
Just up here in Colorado, embracing the meds, watching hummingbirds and mule deer grazing in the yard, memorizing lines, and waiting for this headache to wear off.
Sincerely, Caroline
Sunday, June 25, 2006
Pooped Out!
Right after my last post when I said my energy had been good, I started getting really tired. I just wanted to lie down all the time. I've pretty much been able to take it easy, but it puts me behind on work for the bookstore. Oh well, it'll still be there. Mentally, I've felt unmotivated as well. This morning, I think my energy level is better. I did read two books this week which is unusual for me. (I know I own a bookstore, but I do all the ordering, bookkeeping, and management, so I hire people who like to read.)
I have had just a little touch of queasiness this week - less than last week. I got my prescription filled for Kytril, but I haven't had to take it. I've been taking papaya enzyme for the slight upset stomach, and it seems to be working. I don't know if it really works, but the little pills taste good. Maybe it's just a placebo for me, but whatever works. There are other digestive issues as well, but I'll spare you those gory details, except to say that I noticed on the Preparation H package that there could be drug interference with anit-depressants. (I started on Zoloft about a month ago after my life expectancy talk with the oncologist.) It's always something with cancer! Turns out I can use both, but I have to use "the H" sparingly and not take it orally. 10-4 ont that one - no sucking the Preparation H out of the tube!
My CA19-9 tumor marker test from last Tuesday showed that it was in the 2800 range which the doctor said was good news. This is up from 2577 from the week before. He was glad that it hadn't shot up into the the 3000's. The normal range is 0 -37.
I went to Silverton yesterday with my friend Jill. We had a great time talking and hanging out. It was a gorgeous day - blue sky, lots of sunshine. The crepe-paper poppies have been in bloom around town and are just outrageously bright and beautiful. Our pots of pansies, petunias, lobellia, dianthus, etc. are in bloom and so pretty, and the hummingbirds are constantly buzzing. The deer have chowed down on the annuals in the front flowerbed, but we still have some blooms out there. Summer is so wonderful here. I don't think the wildflowers have started in the mountains yet. We could really use some rain.
Better scoot. Gotta open the store and do my radio show later today.
Thanks to everyone for your prayers, concerns, interest, and LOVE! You make my life wonderful. To my fellow cholangio patients, thanks for your blogs and discussion group posts - they really help. My best wishes and prayers to all of you!
Just up here in Colorado, listening to the hummingbirds, enjoying the flowers, and grateful for each day that I have in my own little paradise!
Sincerely, Caroline
I have had just a little touch of queasiness this week - less than last week. I got my prescription filled for Kytril, but I haven't had to take it. I've been taking papaya enzyme for the slight upset stomach, and it seems to be working. I don't know if it really works, but the little pills taste good. Maybe it's just a placebo for me, but whatever works. There are other digestive issues as well, but I'll spare you those gory details, except to say that I noticed on the Preparation H package that there could be drug interference with anit-depressants. (I started on Zoloft about a month ago after my life expectancy talk with the oncologist.) It's always something with cancer! Turns out I can use both, but I have to use "the H" sparingly and not take it orally. 10-4 ont that one - no sucking the Preparation H out of the tube!
My CA19-9 tumor marker test from last Tuesday showed that it was in the 2800 range which the doctor said was good news. This is up from 2577 from the week before. He was glad that it hadn't shot up into the the 3000's. The normal range is 0 -37.
I went to Silverton yesterday with my friend Jill. We had a great time talking and hanging out. It was a gorgeous day - blue sky, lots of sunshine. The crepe-paper poppies have been in bloom around town and are just outrageously bright and beautiful. Our pots of pansies, petunias, lobellia, dianthus, etc. are in bloom and so pretty, and the hummingbirds are constantly buzzing. The deer have chowed down on the annuals in the front flowerbed, but we still have some blooms out there. Summer is so wonderful here. I don't think the wildflowers have started in the mountains yet. We could really use some rain.
Better scoot. Gotta open the store and do my radio show later today.
Thanks to everyone for your prayers, concerns, interest, and LOVE! You make my life wonderful. To my fellow cholangio patients, thanks for your blogs and discussion group posts - they really help. My best wishes and prayers to all of you!
Just up here in Colorado, listening to the hummingbirds, enjoying the flowers, and grateful for each day that I have in my own little paradise!
Sincerely, Caroline
Thursday, June 22, 2006
Five Down, Two to Go
I had my fifth infusion of Gemzar this week. My blood work showed that my red blood cell count fell below the borderline of anemia, but only slightly. So I was able to do chemo #5 and not have a shot this week. My CA19-9 tumor marker was back up to 2500-something a week ago. It was as high as 3600+ before I got off the clinical trial and fell in the 900 range a few weeks ago. Since it is elevated again, my oncologist wants to add another chemo drug to the mix, possibly Xeloda which is taken in pill form.
I have two more chemo sessions after this, then off one week. I'll be in Taos for a writing conference during that week off.
I got to attend the first hour of my support group last Tuesday, so I enjoyed that.
I realized this week that the oral medication that I take before chemo is a steroid which is supposed to help with nausea. I had trouble sleeping Tuesday night after my chemo treatment which was the case last week. So I'm going to see if it's okay to take Ambien on those evenings to help sleep.
So far this week, I have not had the queasiness I had last time, so I am grateful for that. My energy level is holding up well so far.
We had a good time last weekend in Colorado Springs where I had lived back in the 70's in an old house on Colorado Avenue on the west side of town. My girlfriend Alana and I went up to Manitou Springs (a little further west of where I had lived), and I bought a couple of blouses in a hippie-clothing shop that was playing music from the 70's. It was like I never left Colorado Springs. I also bought a pair of turquoise blue crocs - couldn't resist the new color.
Just up here in Colorado, occasionally dressing like a "damn hippie" (my father is muttering to me from his grave) and wearing those brightly-colored crocs!
Sincerely, Caroline
I have two more chemo sessions after this, then off one week. I'll be in Taos for a writing conference during that week off.
I got to attend the first hour of my support group last Tuesday, so I enjoyed that.
I realized this week that the oral medication that I take before chemo is a steroid which is supposed to help with nausea. I had trouble sleeping Tuesday night after my chemo treatment which was the case last week. So I'm going to see if it's okay to take Ambien on those evenings to help sleep.
So far this week, I have not had the queasiness I had last time, so I am grateful for that. My energy level is holding up well so far.
We had a good time last weekend in Colorado Springs where I had lived back in the 70's in an old house on Colorado Avenue on the west side of town. My girlfriend Alana and I went up to Manitou Springs (a little further west of where I had lived), and I bought a couple of blouses in a hippie-clothing shop that was playing music from the 70's. It was like I never left Colorado Springs. I also bought a pair of turquoise blue crocs - couldn't resist the new color.
Just up here in Colorado, occasionally dressing like a "damn hippie" (my father is muttering to me from his grave) and wearing those brightly-colored crocs!
Sincerely, Caroline
Friday, June 16, 2006
Chemo #4, Davanat Update
I had my fourth Gemzar infusion on Tuesday. I forgot to take my routine medications on Tuesday morning, so I took them Tuesday at bedtime. One of my meds kept me up all night. I couldn't "call in sick" on Wednesday as I had a lot going on that day, and really, I felt pretty good despite little sleep.
Wednesday night I slept very soundly. I went to a meeting yesterday morning and never really woke up. So I came home and slept most of the day and slept really well last night. So I feel better this morning. I was just really tired - one of those low energy days.
I also feel queasy, but not really nauseated. I did get a prescription for Kytril, an anit-nausea medication. I had taken it after my first two chemo treatments - the oncology center gave me samples of it. When I went to fill my Rx for it, no one had it in stock. I found out it is a very expensive drug, but I have hit my deductible so I have no copay. So I was able to get on the Kytril yesterday, and my tummy feels better today.
As for Davanat, I spoke to a doctor at the pharmaceutical company and he said that for the new cholangio trial, they only want newly diagnosed patients who haven't had any chemo yet. The doctor also said there's only one cholangio patient that the Davanat was tested on, although she had very good results. My oncologist also talked to the Davanat doctor. He told both of us that it may be better to stick with Gemzar which has some track record other than try a treatment that there's no evidence for yet. The Davanat doctor also mentioned that at the recent ASCO conference, he heard that there's new evidence that Gemzar may work better than originally demonstrated.
Dr. Bergen and I discussed applying for a "compassionate use" of Davanat down the road if my Gemzar doesn't work out. Dr. Bergen said we may add Xeloda to the Gemazar in the near future which is a chemo drug taken in a pill form.
If any new cholangiocarcinoma patients are reading this, I would consider the Davanat trial. There should be more info posted soon on clinicaltrials.gov or contact the drug company at 617-559-0033.
Robert & I are headed to Colorado Springs today to attend a gem & mineral show and to visit friends. We'll be back tomorrow night.
Just up here in Colorado keeping the faith, getting some sleep.
Sincerely, Caroline
Wednesday night I slept very soundly. I went to a meeting yesterday morning and never really woke up. So I came home and slept most of the day and slept really well last night. So I feel better this morning. I was just really tired - one of those low energy days.
I also feel queasy, but not really nauseated. I did get a prescription for Kytril, an anit-nausea medication. I had taken it after my first two chemo treatments - the oncology center gave me samples of it. When I went to fill my Rx for it, no one had it in stock. I found out it is a very expensive drug, but I have hit my deductible so I have no copay. So I was able to get on the Kytril yesterday, and my tummy feels better today.
As for Davanat, I spoke to a doctor at the pharmaceutical company and he said that for the new cholangio trial, they only want newly diagnosed patients who haven't had any chemo yet. The doctor also said there's only one cholangio patient that the Davanat was tested on, although she had very good results. My oncologist also talked to the Davanat doctor. He told both of us that it may be better to stick with Gemzar which has some track record other than try a treatment that there's no evidence for yet. The Davanat doctor also mentioned that at the recent ASCO conference, he heard that there's new evidence that Gemzar may work better than originally demonstrated.
Dr. Bergen and I discussed applying for a "compassionate use" of Davanat down the road if my Gemzar doesn't work out. Dr. Bergen said we may add Xeloda to the Gemazar in the near future which is a chemo drug taken in a pill form.
If any new cholangiocarcinoma patients are reading this, I would consider the Davanat trial. There should be more info posted soon on clinicaltrials.gov or contact the drug company at 617-559-0033.
Robert & I are headed to Colorado Springs today to attend a gem & mineral show and to visit friends. We'll be back tomorrow night.
Just up here in Colorado keeping the faith, getting some sleep.
Sincerely, Caroline
Saturday, June 10, 2006
Looking into Davanat
I have been contacted by several people about Davanat which is a carbohydrate compound being tested to lessen the effects of chemotherapy. It has shown promise in early trials with colon cancer and cholangiocarcinoma, not only in lessening the side effects of chemo, but actually shrinking tumors as well. A new trial for cholangio patients is supposed to opening soon (sooner than the several months time frame that I recently heard it would be). My oncologist and I are going to discuss this further at my appointment next week. It may mean that I'll have to quit my current chemo regimen as quickly as possible so I can be off it for the requisite time period before going on the trial. The Davanat has been used in conjunction with the chemo drug 5FU and I think they're considering other chemo drugs as well, but not the gemcitabine that I'm currently taking.
If any of my fellow cc patients are interested in this compound, I would suggest contacting the manufacturer, Pro-Pharmaceuticals, at 617-559-0033. They also have a website at www.pro-pharmaceuticals.com. There has been a cholangiocarcinoma patient who got Davanat through a compassionate use provision.
Otherwise, I have been feeling pretty good - some queasiness, but still a good appetite. I do get really tired sometimes, but for the most part, my energy level has been good.
Just up here in Colorado enjoying the summer weather and spending time with my sister Diane.
Sincerely, Caroline
If any of my fellow cc patients are interested in this compound, I would suggest contacting the manufacturer, Pro-Pharmaceuticals, at 617-559-0033. They also have a website at www.pro-pharmaceuticals.com. There has been a cholangiocarcinoma patient who got Davanat through a compassionate use provision.
Otherwise, I have been feeling pretty good - some queasiness, but still a good appetite. I do get really tired sometimes, but for the most part, my energy level has been good.
Just up here in Colorado enjoying the summer weather and spending time with my sister Diane.
Sincerely, Caroline
Thursday, June 08, 2006
Davanat Trial
I called ProPharamceuticals yesterday about the Davanat trial for cholangiocarcinoma. Someone from the company called back and told my husband Robert that the trial won't start for a few months, which is why I couldn't find anything on clinicaltrials.gov or pro-pharmaceuticals.com. If I find out anything else, I will mention it here and on cholangiocarcinoma.org.
My sister Diane and I went on short hike yesterday a.m. with the local women's hiking group. (There's another woman in the group besides me who has cancer, so they chose this short hike so we'd be able to handle it. Unfortunately, the other woman with cancer just didn't feel up to it yesterday.) Then, Diane & I ran errands in Montrose and had lunch with a friend there. We came home last night and took it easy. We bought a bunch of bedding plants which we hope to plant in the next few days - some annuals and some herbs.
We're gettting some rain here which we need very badly.
I have to scoot. Gotta run the bookstore today.
Thanks everyone for your thoughts and prayers!
Sincerely, Caroline
My sister Diane and I went on short hike yesterday a.m. with the local women's hiking group. (There's another woman in the group besides me who has cancer, so they chose this short hike so we'd be able to handle it. Unfortunately, the other woman with cancer just didn't feel up to it yesterday.) Then, Diane & I ran errands in Montrose and had lunch with a friend there. We came home last night and took it easy. We bought a bunch of bedding plants which we hope to plant in the next few days - some annuals and some herbs.
We're gettting some rain here which we need very badly.
I have to scoot. Gotta run the bookstore today.
Thanks everyone for your thoughts and prayers!
Sincerely, Caroline
Tuesday, June 06, 2006
Chemo #3 Today, Contacted About a New Trial
Robert & I went to Grand Junction today for my third infusion of Gemzar. My blood draw went very smoothly today. I got to attend a portion of my support group. The last two weeks I got 75% of a full infusion, but today I got 100%.
Dr. Bergen pointed out some items in my blood chemistry that are elevated. He said that these indicate the cancer or the chemo or both. He said if they keep elevating, we may have to add another chemo to the mixture. He mentioned one drug that is new and that may be controversial with my insurance company the name of which escapes me.
I was contacted tonight by a man from New Hampshire about a new compound being tested in conjunction with chemo for reducing the side effects of chemo, but in Phase I of testing, a cholangio patient had very good results with it affecting her tumors in a positive way. It's supposed to be in Phase II for cholangio, but on the www.clinicaltrials.gov site, it said it was being tested for colorectal cancer. The compound is a carbohydrate called Davanat manufactured by ProPharmaceuticals. (www.pro-pharmaceuticals.com, 617-559-0033 x115) I'm going to contact them tomorrow about this trial. I hope it really is being tested for cholangio. If you go to the manufacturer's website, there is an article from February this year about it being used in cholangio.
My sister Diane drove in today from Arizona, and it is so nice to have her here. She's going to help me with some things around the house and at work.
It's late and I better hit the hay.
Just up here in Colorado with my hope being restored each day.
Sincerely, Caroline
Dr. Bergen pointed out some items in my blood chemistry that are elevated. He said that these indicate the cancer or the chemo or both. He said if they keep elevating, we may have to add another chemo to the mixture. He mentioned one drug that is new and that may be controversial with my insurance company the name of which escapes me.
I was contacted tonight by a man from New Hampshire about a new compound being tested in conjunction with chemo for reducing the side effects of chemo, but in Phase I of testing, a cholangio patient had very good results with it affecting her tumors in a positive way. It's supposed to be in Phase II for cholangio, but on the www.clinicaltrials.gov site, it said it was being tested for colorectal cancer. The compound is a carbohydrate called Davanat manufactured by ProPharmaceuticals. (www.pro-pharmaceuticals.com, 617-559-0033 x115) I'm going to contact them tomorrow about this trial. I hope it really is being tested for cholangio. If you go to the manufacturer's website, there is an article from February this year about it being used in cholangio.
My sister Diane drove in today from Arizona, and it is so nice to have her here. She's going to help me with some things around the house and at work.
It's late and I better hit the hay.
Just up here in Colorado with my hope being restored each day.
Sincerely, Caroline
Friday, June 02, 2006
Chemo #2 Under My Belt
We are getting into our routine of Tuesday trips to Grand Junction for my treatments. We leave Ouray at 7:30am so I can attend a two-hour support group for women at the oncology center at 9:30am. Usually, I see my oncologist later in the morning. I don't always get to stay for the whole group meeting, but even if I get the first hour in, it's still a big help. I just love the other women I've met there. It's hectic getting up earlier that day, trying to eat something so I can take my meds, and get on the road, but it is well worth it.
I had my second chemo this past Tuesday. They checked my blood prior to the infusion. It showed that I was just above the borderline of being anemic which means my red blood cells have been affected. The nurse said there is a shot they can give me to help, but they can only give it once every two weeks, so I didn't have it this time. I think they wanted to save it in case I need it next week. I did feel really tired last Monday and Tuesday.
I am very squeamish about having my blood drawn and being poked with needles, but I usually handle it okay. I did almost pass out this last week. I had to put my head between my legs, and we had to start over again with the blood draw which they also use to set up for the infusion. The tech was very understanding and said it is a very natural response. Usually, I just look away and make Robert look me in the eyes. I think the borderline anemia made it harder for me to deal with being jabbed this week.
One of our members turned 80 in our support group, so we celebrated her birthday. She is really amazing how she's handled her cancer and some heart trouble as well. Unfortunately, another of our group members passed away last week.
The past two days, my energy levels have been pretty good. Still no nausea, but I'm taking some anti-nausea medication just in case. I also had a little steroid before the infusion which helps with the energy level. I've been able to sleep at night just fine. As I was getting my chemo at the noon hour this week, they provided lunch from the little deli in the oncology center which I thought was very nice.
The busy summer tourist season has started with Memorial Day last weekend, and we had good days in our shops. This week, I've taken it somewhat easy. I've been pampering myself with a haircut, manicure, and pedicure, and bought a new skirt. I attended two writing sessions - one for poetry and one for a group of women in the area working on longer prose pieces. I allowed myself to read most of yesterday, something I have a hard time doing even though I own a bookstore. So I need to get my nose back on the grindstone and get some real work done.
Thanks to everyone for your prayers and good wishes. It's beautiful in Ouray right now, so I'm enjoying the hummingbirds and flowers.
Sincerely,
Caroline
I had my second chemo this past Tuesday. They checked my blood prior to the infusion. It showed that I was just above the borderline of being anemic which means my red blood cells have been affected. The nurse said there is a shot they can give me to help, but they can only give it once every two weeks, so I didn't have it this time. I think they wanted to save it in case I need it next week. I did feel really tired last Monday and Tuesday.
I am very squeamish about having my blood drawn and being poked with needles, but I usually handle it okay. I did almost pass out this last week. I had to put my head between my legs, and we had to start over again with the blood draw which they also use to set up for the infusion. The tech was very understanding and said it is a very natural response. Usually, I just look away and make Robert look me in the eyes. I think the borderline anemia made it harder for me to deal with being jabbed this week.
One of our members turned 80 in our support group, so we celebrated her birthday. She is really amazing how she's handled her cancer and some heart trouble as well. Unfortunately, another of our group members passed away last week.
The past two days, my energy levels have been pretty good. Still no nausea, but I'm taking some anti-nausea medication just in case. I also had a little steroid before the infusion which helps with the energy level. I've been able to sleep at night just fine. As I was getting my chemo at the noon hour this week, they provided lunch from the little deli in the oncology center which I thought was very nice.
The busy summer tourist season has started with Memorial Day last weekend, and we had good days in our shops. This week, I've taken it somewhat easy. I've been pampering myself with a haircut, manicure, and pedicure, and bought a new skirt. I attended two writing sessions - one for poetry and one for a group of women in the area working on longer prose pieces. I allowed myself to read most of yesterday, something I have a hard time doing even though I own a bookstore. So I need to get my nose back on the grindstone and get some real work done.
Thanks to everyone for your prayers and good wishes. It's beautiful in Ouray right now, so I'm enjoying the hummingbirds and flowers.
Sincerely,
Caroline
Wednesday, May 24, 2006
Started Chemo Yesterday
Robert & I went to see Dr. Bergen yesterday. We ruled out starting another clinical trial. He suggested chemo and asked if I wanted to start right away. So I had my first infusion of Gemzar (gemcitabine) which only took about 30 minutes, although we had to wait around a bit to get started as I wasn't scheduled to start yesterday. The infusion room at St. Mary's Oncology Center is really nice. They have comfortable chairs which are heated and have magic fingers. There's TV screens at each chair and headphones. There was even a therapy dog walking around the room.
We decided to start with a single agent and see how it goes. I'll be having chemo once a week for 6 - 7 weeks provided my platelets stay where they need to be. So far I have no side effects of nausea, although I'm taking an anti-nausea med, and have several other anit-nausea back-up meds. They gave me steroids yesterday and I'll take some of those this week, as well as an antibiotic. I have had flu-like symptoms since going off the clinical trial, which Dr. Bergen thinks is probably "tumor fever". I was feeling really run down last week, and I had a hectic week with the bookstore, so if you haven't heard from recently, it's because I was busy with work and just resting when I could. Anyway, the antibiotic is in case my flu symptoms aren't from tumor fever. There has been a bug going around Ouray, but frankly, I had these run-down feelings back in March before I started the clinical trial med and the steroids for the rash.
I'm actually amazed at how much better I started feeling even yesterday afternoon. I think the steroid is helping. I don't feel any nausea at all, although I felt it just mildly yesterday evening. I may have some side effects 36 - 48 hours after infusion when the platelet level may drop. I have to be very careful to avoid cuts or injury because the chemo will prevent healing.
Kay, my support group leader, is a big believer in visualization and imaginining our treatment working and visualizing healing. So I've been trying to focus on that. Robert said he visualizes little "Pac Men" in my body gobbling up my cancer.
I am proud to tell you that I received an award from the Elks Club on Saturday night for "Citizen of the Year". They were impressed with how I keep volunteering in the community despite my health challenges. I am very honored to receive this award.
Robert & I are in Telluride today and tonight, so once I finish the blog post, I'll have to go. I won't be able to check e-mail or blog comments for a few days.
Just up here in Colorado, appreciative of everyone's prayers and support. And visualizing those Pac Men gobbling up my cancer!
We decided to start with a single agent and see how it goes. I'll be having chemo once a week for 6 - 7 weeks provided my platelets stay where they need to be. So far I have no side effects of nausea, although I'm taking an anti-nausea med, and have several other anit-nausea back-up meds. They gave me steroids yesterday and I'll take some of those this week, as well as an antibiotic. I have had flu-like symptoms since going off the clinical trial, which Dr. Bergen thinks is probably "tumor fever". I was feeling really run down last week, and I had a hectic week with the bookstore, so if you haven't heard from recently, it's because I was busy with work and just resting when I could. Anyway, the antibiotic is in case my flu symptoms aren't from tumor fever. There has been a bug going around Ouray, but frankly, I had these run-down feelings back in March before I started the clinical trial med and the steroids for the rash.
I'm actually amazed at how much better I started feeling even yesterday afternoon. I think the steroid is helping. I don't feel any nausea at all, although I felt it just mildly yesterday evening. I may have some side effects 36 - 48 hours after infusion when the platelet level may drop. I have to be very careful to avoid cuts or injury because the chemo will prevent healing.
Kay, my support group leader, is a big believer in visualization and imaginining our treatment working and visualizing healing. So I've been trying to focus on that. Robert said he visualizes little "Pac Men" in my body gobbling up my cancer.
I am proud to tell you that I received an award from the Elks Club on Saturday night for "Citizen of the Year". They were impressed with how I keep volunteering in the community despite my health challenges. I am very honored to receive this award.
Robert & I are in Telluride today and tonight, so once I finish the blog post, I'll have to go. I won't be able to check e-mail or blog comments for a few days.
Just up here in Colorado, appreciative of everyone's prayers and support. And visualizing those Pac Men gobbling up my cancer!
Thursday, May 18, 2006
Next Step: Chemo or Clinical Trial
Robert & I saw my oncologist on Tuesday. We discussed several clinical trials; both Dr. Bergen and I had done research and we compared notes. There is one trial that he thinks might have merit, so he was going to investigate further. We discussed chemo options as well. We meet again next Tuesday to discuss which road I'll take. In the chemo realm, he is in favor of starting with Gemzar alone, but he asked me to think about how aggressive an approach I want to take with the chemo. Gemzar (gemcitabine) is well tolerated. Typically, you don't lose your hair and their are minimal side effects.
My liver is enlarged on both the right and left sides. There is some indication that there is liver damage. My bilirubin is still working okay, but when that stops you get jaundice and have to get a stent. My right side hurts most days. The liver itself doesn't have nerve endings, but the "capsule" which encases the liver does. Usually, Ibuprofen works on relieving that pain. I asked Dr. Bergen some hard questions about life expectancy and how the disease will affect me should it progress.
I attended the last portion of the cancer support group for women. Kay, our leader, firmly believes in miracles, so that is what I'm hoping for in my fight with cholangiocarcinoma.
We went to see one of my case managers at my insurance company after seeing the oncologist. We also got a pair of my crocs fixed. One of the grommets had come fallen out of a pair. We found a nurse's supply place that sells them for the best price we've found, and they had extra replacement grommets.
We also went by Carlson Memorials and ordered our "headstone" for our cemetary plot. We are both planning to be cremated, so in Ouray we can have one plot. We actually opted for a bench made out of a South Dakota granite. Our ashes will actually go in the base of the bench. The bench will have our family name engraved on the side, and on top of the bench we'll have our names, dates, etc. with some artwork.
We also ran several more errands up in Grand Junction on Tuesday and had dinner with friends. Yesterday, I had two booths at Taste of Ouray: one for the bookstore and one for the Humane Society. Later today, I will set up the two booths for a "Women In Construction" conference coming to Ouray this weekend. Robert helped me a bunch yesterday as I'm sure he will today. Last night I was exhausted. I slept a long time (for me) last night, but I know I'll be pooped again this evening.
So that is where I'm at now. I'm just up here in Colorado praying for a miracle.
My liver is enlarged on both the right and left sides. There is some indication that there is liver damage. My bilirubin is still working okay, but when that stops you get jaundice and have to get a stent. My right side hurts most days. The liver itself doesn't have nerve endings, but the "capsule" which encases the liver does. Usually, Ibuprofen works on relieving that pain. I asked Dr. Bergen some hard questions about life expectancy and how the disease will affect me should it progress.
I attended the last portion of the cancer support group for women. Kay, our leader, firmly believes in miracles, so that is what I'm hoping for in my fight with cholangiocarcinoma.
We went to see one of my case managers at my insurance company after seeing the oncologist. We also got a pair of my crocs fixed. One of the grommets had come fallen out of a pair. We found a nurse's supply place that sells them for the best price we've found, and they had extra replacement grommets.
We also went by Carlson Memorials and ordered our "headstone" for our cemetary plot. We are both planning to be cremated, so in Ouray we can have one plot. We actually opted for a bench made out of a South Dakota granite. Our ashes will actually go in the base of the bench. The bench will have our family name engraved on the side, and on top of the bench we'll have our names, dates, etc. with some artwork.
We also ran several more errands up in Grand Junction on Tuesday and had dinner with friends. Yesterday, I had two booths at Taste of Ouray: one for the bookstore and one for the Humane Society. Later today, I will set up the two booths for a "Women In Construction" conference coming to Ouray this weekend. Robert helped me a bunch yesterday as I'm sure he will today. Last night I was exhausted. I slept a long time (for me) last night, but I know I'll be pooped again this evening.
So that is where I'm at now. I'm just up here in Colorado praying for a miracle.
Monday, May 15, 2006
Today in Ouray
Today I had my wonderful hubby, Robert, bring the digital camera up to the bookstore. The mountain behind me looking south on Main Street is Mt. Hayden, really the lesser mountain of all you can see from Ouray. Of course, that's Robert in the picture with me.
Tomorrow we see Dr. Bergen, my oncologist, in Grand Junction, and we'll know more about my next plan of attack.
Meanwhile, I'm just up here in Colorado, selling a few books.
Sunday, May 14, 2006
Shoe Therapy
Yesterday, I did go with my husband on his rockhounding trip outside of Grand Junction. He didn't find much, but I know he loves to get out there and dig for mineral specimens. I stayed at the the truck and read, wrote, and napped. Then we ran some errands in Grand Junction. I got three new pairs of Crocs - ocean blue, sage green, and bright purple. This "retail shoe therapy" always helps me to get over bad news from the oncologist. Took three pair this time. I almost got red, too, but I have other red shoes so I'm not in such a hurry for red or any neutral color of Crocs.
By the way, Happy Mother's Day to anyone out there who is a mother, stepmother, or like a mother to somebody.
We tried to eat as healthy as possible yesterday, although I did drink part of a beer out in the field - a few other friends were there and for some reason, beer just sounded good. After a salad at Chili's, we went to the Beyond Juice place and split a fruit smoothie for dessert.
I have found three possibilities for new clinical trials. All involve chemo with something else - heat, radiation, or another drug. I'll have a lot more questions before I try another clinical trial. I don't think I can start any of them until I'm off the sorafenib for one month which would be roughly June 12th. I don't know what to think of chemo - it seems to have such a low rate of success with cholangiocarcinoma, yet several people on the cholangiocarcinoma.org website have had good results. If I'm not going to live that much longer, I don't know if I want to spend what time I have left dealing with the side effects of chemo. I'll know more Tuesday when I see the oncologist. I don't know how many tumors I can get in my liver and how long I can live with the little bastards, but if sheer will to live works, then I will be here a long time. Everyone says I volunteer too much or should say no more often. Well, I'm not volunteering to go to heaven so soon - I'm saying no. God can get someone else to be the greeter up in heaven.
Just up here in Colorado wearing new Crocs and hitting the "Override" button.
By the way, Happy Mother's Day to anyone out there who is a mother, stepmother, or like a mother to somebody.
We tried to eat as healthy as possible yesterday, although I did drink part of a beer out in the field - a few other friends were there and for some reason, beer just sounded good. After a salad at Chili's, we went to the Beyond Juice place and split a fruit smoothie for dessert.
I have found three possibilities for new clinical trials. All involve chemo with something else - heat, radiation, or another drug. I'll have a lot more questions before I try another clinical trial. I don't think I can start any of them until I'm off the sorafenib for one month which would be roughly June 12th. I don't know what to think of chemo - it seems to have such a low rate of success with cholangiocarcinoma, yet several people on the cholangiocarcinoma.org website have had good results. If I'm not going to live that much longer, I don't know if I want to spend what time I have left dealing with the side effects of chemo. I'll know more Tuesday when I see the oncologist. I don't know how many tumors I can get in my liver and how long I can live with the little bastards, but if sheer will to live works, then I will be here a long time. Everyone says I volunteer too much or should say no more often. Well, I'm not volunteering to go to heaven so soon - I'm saying no. God can get someone else to be the greeter up in heaven.
Just up here in Colorado wearing new Crocs and hitting the "Override" button.
Friday, May 12, 2006
Disease Progression, Removed from Trial
My oncologist called me today to give me the results of my most recent CT-scan done this past Tuesday. My four tumors have doubled in size from 1" to 2" (from pig turds to horse turds) plus several new little ones (rat turds). The clinical trial only allows for a 20% increase in tumor size, so I was booted off the trial.
I am so disappointed. I wish I'd had my last scan the day before I started on the trial instead of one month before I started on it. Then I was only on the med for 2 weeks, then off two, then back at reduced dosage for three weeks while on a steroid that is on the list of drugs that interferes with the clinical trial med. They don't take any of this into account.
So my advice to you is this. If you go on a clinical trial, try to have a CT-scan right before you start on the trial.
So we're looking for another clinical trial or to go onto chemo. I see Dr. Bergen, my oncologist, next Tuesday. I will also go to my support group if I get out in time. I went last Tuesday and really enjoyed it. I am also going to see my case manager at my health insurance company. I did find out that they cover my prescriptions once I meet the deductible.
I also saw Dr. Kane in Montrose on Monday. She said she would have also suggested the clinical trial for me. She was very nice. I don't know if I'll see her anymore if I'm not going to be in the trial. She and I also discussed chemo options.
Well, I feel really devastated today. I'll have to spend some time talking myself out of this. I'm going to try to do better with my diet and exercise. Tomorrow we are going on a field trip. I may stay home and catch up on some work, or just take it with me and work on it in the car.
Just up here in Colorado wondering if these damn tumors are ever going to give me a break.
I am so disappointed. I wish I'd had my last scan the day before I started on the trial instead of one month before I started on it. Then I was only on the med for 2 weeks, then off two, then back at reduced dosage for three weeks while on a steroid that is on the list of drugs that interferes with the clinical trial med. They don't take any of this into account.
So my advice to you is this. If you go on a clinical trial, try to have a CT-scan right before you start on the trial.
So we're looking for another clinical trial or to go onto chemo. I see Dr. Bergen, my oncologist, next Tuesday. I will also go to my support group if I get out in time. I went last Tuesday and really enjoyed it. I am also going to see my case manager at my health insurance company. I did find out that they cover my prescriptions once I meet the deductible.
I also saw Dr. Kane in Montrose on Monday. She said she would have also suggested the clinical trial for me. She was very nice. I don't know if I'll see her anymore if I'm not going to be in the trial. She and I also discussed chemo options.
Well, I feel really devastated today. I'll have to spend some time talking myself out of this. I'm going to try to do better with my diet and exercise. Tomorrow we are going on a field trip. I may stay home and catch up on some work, or just take it with me and work on it in the car.
Just up here in Colorado wondering if these damn tumors are ever going to give me a break.
Monday, May 08, 2006
Could Be Good, Could Be Bad
Dr. Bergen called me last Friday as we were on our way to Santa Fe for the weekend. (We had a great time by the way.) He caught us in Durango. He told me he was concerned about my CA19-9 tumor marker. It has gone from a low of 91 last December just after surgery, to a new high for me of 3,643 last week. He is concerned that this means "disease progression". But it could also mean that the Sorafenib is working, and as the tumors or cancer dies, it's dumping a lot of CA19-9 in my bloodstream. We'll certainly hope for the later.
Our support group leader in Grand Junction, Kay, says there are miracles everyday and to have hope and stay positive, which I think I do a pretty good job of. However, I did feel a little edgy this weekend knowing I have a scan Tuesday and worried that they'll find a "sweet potato" inside my liver. Or a gilion "cat turds". (I don't call tumors hairballs anymore, I call them turds.) Okay, I'm going to quit "borrowing trouble", as my husband Robert puts it, and not worry until I need to. The scan is tomorrow and we'll get the results a week later when I meet with Dr. Bergen. I always have to prepare for bad news just in case. If I go in thinking everything will be fine, and it's not, I really fall apart. We can always go to the mall and get me some blue or green Crocs.
Today, I see Dr. Madeline Kane of CU Anschutz Cancer Center to see about transfering me to CU for the clinical trial which they are now enrolled in. (Dr. Kane comes to Montrose once a month which is just 45 minutes away. Denver is a 6 hour drive.) Dr. Bergen says he trained under Dr. Kane, and he thinks very highly of her. Says she's one of the best GI oncologists in the state and will probably retire soon.
So I must run and get "gussied up" for my new doctor. I hope all of you are well, and as always thanks for all the good things. I owe several of you phone calls and hope to catch up this week.
Just up here in Colorado sending positive turd-zapping energy to my liver.
Our support group leader in Grand Junction, Kay, says there are miracles everyday and to have hope and stay positive, which I think I do a pretty good job of. However, I did feel a little edgy this weekend knowing I have a scan Tuesday and worried that they'll find a "sweet potato" inside my liver. Or a gilion "cat turds". (I don't call tumors hairballs anymore, I call them turds.) Okay, I'm going to quit "borrowing trouble", as my husband Robert puts it, and not worry until I need to. The scan is tomorrow and we'll get the results a week later when I meet with Dr. Bergen. I always have to prepare for bad news just in case. If I go in thinking everything will be fine, and it's not, I really fall apart. We can always go to the mall and get me some blue or green Crocs.
Today, I see Dr. Madeline Kane of CU Anschutz Cancer Center to see about transfering me to CU for the clinical trial which they are now enrolled in. (Dr. Kane comes to Montrose once a month which is just 45 minutes away. Denver is a 6 hour drive.) Dr. Bergen says he trained under Dr. Kane, and he thinks very highly of her. Says she's one of the best GI oncologists in the state and will probably retire soon.
So I must run and get "gussied up" for my new doctor. I hope all of you are well, and as always thanks for all the good things. I owe several of you phone calls and hope to catch up this week.
Just up here in Colorado sending positive turd-zapping energy to my liver.
Thursday, May 04, 2006
Caroline, the Drama Queen
Tonight I went to the school play, and it was fabulous! They did "Radium Girls" about women in the 1920's who worked painting clock dials with radium paint and died of cancer - hit a little close to home. I was so impressed with the high school kids; all of them were good, but some of them were exceptional - one of them is only a freshman. Their teacher/director Nancy Nixon will direct the melodrama that I will be in this summer: August 2nd - 4th for anyone who wants to come. The play tonight made me so excited about my "acting job" this summer - the proceeds go toward scholarships and to fund other projects that WISE (Women In Support of Education, formerly a local chapter of AAUW) awards. We do the melodrama every other year, so I'm glad it's falling this year.
I saw Dr. Gates, my GP, on Tuesday. I'm doing pretty good. I asked if we could increase the sorafenib, but I was told by the clinical trial folks that once you go down, they don't let you go back up in dosage. Bummer. But it seems to be working for me. I have a little bit of rash which mostly consists of a few pimple-like bumps on my legs, and unfortunately, two on my rear end. I have some hand-foot syndrome which means I have to be careful about being on my feet. I took my last steroid yesterday, but I still have lots of energy. I went back to the bookstore tonight after the play and finished up some work there. We leave town tomorrow, and some things just had to get done tonight. I also love my bookstore, so I love being there. I will have to take a sleepping pill. I guess I just get too excited by life, and it irritates me that I have to spend any time sleeping.
My CA19-9 tumor marker was 3,643 this week. It was 1000-something the time before. It is a pancreatic tumor marker that they track on cholangio patients, too. It bounces around, but I think this may be the highest it's ever been. Some of my liver enzymes are slightly up, but not enough to have to go off the trial. I may just make it. This just may work.
A hospice-nurse friend of mine told me that if I ever have to start paying for this drug, it'll cost about $15,000 for Nexofar (a brand name for sorafenib). I about died. I asked the clinical trial folks about this today, and they said that's about right, but it'll be a long timebefore it ever gets approved for cholangio, and they doubted I'd ever have to pay for it. It still has to go through Phase II and then Phase III testing and then probably something else. As long as it's working for me, they'll let me stay on it indefinitely.
I'm still trying to figure out if I have Rx insurance. I thought I didn't - my premium is only $197/month, and I declined the Rx rider which the letter said wasn't available to HSA high-deductible plan members. But then I called Rocky Mountain Health Plans this week because I wanted to make sure I got it at renewal on July 1st, and the girl told me I DID have coverage once I met my deductible of $5,000 which I think I've already hit. I called last year, and they told me I didn't have Rx coverage. I'm going to try to submit an Rx claim - that'll tell me for sure. She told me I was too late to submit last year's. That pissed me off. I still don't think I have Rx coverage. I'm going to go to the RMHP office in GJ next week in person to get to the bottom this. I also need to find out if they're going to raise my premium. I'm on an individual policy, and I've been told it can go up, a lot. I can go to Cover Colorado, the last chance health insurance company in Colorado. My husband is on it, but it's not as good as RMHP, but he does have Rx coverage, although his premium is almost double mine. I can still deduct medical expenses on my tax return even though some run through an HSA. I probably won't pay taxes for a long time with the medical costs. I keep every receipt, but then again, I was an accountant in a former life. By the way, the good people of Ouray, actually the Elks, had a fundraiser for me last January which really helped us out, so we are in good shape.
I also went to a support group for women with cancer at St. Mary's in Grand Junction on Tuesay. I'll have appointments the next two Tuesdays in GJ, so I can go then, too. It was wonderful. I just love that group. In the summer when I'm busier, I may go to Bosom Buddies in Montrose which is closer. I encourage any of you if you have a support group you can attend, it might really be worth it.
I just had two wonderful friends come visit from Salida - Barb Hearte-Crossan and Sharon Rowe. They helped me weed my front flower bed which I usually get started on in the spring and get too busy to ever finish. I want to plant hollyhocks there - I think they'll look good. Anyone have any experience with them? The deer will probably eat them, but I'm gonna try anyway. We had many good "girl talks" during our two days. This weekend, I will see good friends that I met 28 years ago at University of New Mexico in the geology department. We're all big talkers, so this will be a major blabfest! Our "beaus" are joining us. They're going to golf, hike, and rockhound. On Sunday, we're going to the Harding Pegmatite near Taos, where we all went on our mineralogy field trip back in 1978.
I think my hair loss has stopped. I had plenty of hair, so I can't complain - still have plenty left. Tammy, my hairdresser, gave me a really cute short haircut. I really don't mind too much if ultimately I lose all my hair. I can have some fun with that - a redhead one day, a blonde the next, brunette, curly, straight, fro, etc. One friend suggested that I get a long, blonde, curly wig and a push-up bra and go for the Dolly Parton look. I may actually need more a winch or block & tackle at this point, if you know what I mean. I also love hats and may take to wearing matching gloves if I get to that point. I always kind of regretted that I didn't get to live in the 40's when those were in style. I can always paint my head, too! And scarves!
I want to thank everyone who has offered prayers and support. You've all been so wonderful. I think your prayers are working. I am actually very lucky - there are people on the cholangiocarcinoma.org website that are going through so much with their treatments and their tumors. If you have any extra prayers, please remember my cohorts in this battle.
I'm hoping that I'm being "melodramatic" in some of my concerns about leaving this world before I'm ready. But if I don't beat these cancerous turds in my liver, I plan to be the "greeter" at the Pearly Gates, kind of like those ladies at Wal-Mart. I'll be there to greet you when you get there. (After I go find George Harrison, John Lennon, and Jimi Hendrix, of course.) I'm hoping to err on the drama queen side. I hope someday someone from the Humane Society says, "Well, she told us her odds weren't that good so she quit the Board, and now look at her, still here five years later."
God, you can have my hair. Just leave me on this earth. I'm having too much fun.
I saw Dr. Gates, my GP, on Tuesday. I'm doing pretty good. I asked if we could increase the sorafenib, but I was told by the clinical trial folks that once you go down, they don't let you go back up in dosage. Bummer. But it seems to be working for me. I have a little bit of rash which mostly consists of a few pimple-like bumps on my legs, and unfortunately, two on my rear end. I have some hand-foot syndrome which means I have to be careful about being on my feet. I took my last steroid yesterday, but I still have lots of energy. I went back to the bookstore tonight after the play and finished up some work there. We leave town tomorrow, and some things just had to get done tonight. I also love my bookstore, so I love being there. I will have to take a sleepping pill. I guess I just get too excited by life, and it irritates me that I have to spend any time sleeping.
My CA19-9 tumor marker was 3,643 this week. It was 1000-something the time before. It is a pancreatic tumor marker that they track on cholangio patients, too. It bounces around, but I think this may be the highest it's ever been. Some of my liver enzymes are slightly up, but not enough to have to go off the trial. I may just make it. This just may work.
A hospice-nurse friend of mine told me that if I ever have to start paying for this drug, it'll cost about $15,000 for Nexofar (a brand name for sorafenib). I about died. I asked the clinical trial folks about this today, and they said that's about right, but it'll be a long timebefore it ever gets approved for cholangio, and they doubted I'd ever have to pay for it. It still has to go through Phase II and then Phase III testing and then probably something else. As long as it's working for me, they'll let me stay on it indefinitely.
I'm still trying to figure out if I have Rx insurance. I thought I didn't - my premium is only $197/month, and I declined the Rx rider which the letter said wasn't available to HSA high-deductible plan members. But then I called Rocky Mountain Health Plans this week because I wanted to make sure I got it at renewal on July 1st, and the girl told me I DID have coverage once I met my deductible of $5,000 which I think I've already hit. I called last year, and they told me I didn't have Rx coverage. I'm going to try to submit an Rx claim - that'll tell me for sure. She told me I was too late to submit last year's. That pissed me off. I still don't think I have Rx coverage. I'm going to go to the RMHP office in GJ next week in person to get to the bottom this. I also need to find out if they're going to raise my premium. I'm on an individual policy, and I've been told it can go up, a lot. I can go to Cover Colorado, the last chance health insurance company in Colorado. My husband is on it, but it's not as good as RMHP, but he does have Rx coverage, although his premium is almost double mine. I can still deduct medical expenses on my tax return even though some run through an HSA. I probably won't pay taxes for a long time with the medical costs. I keep every receipt, but then again, I was an accountant in a former life. By the way, the good people of Ouray, actually the Elks, had a fundraiser for me last January which really helped us out, so we are in good shape.
I also went to a support group for women with cancer at St. Mary's in Grand Junction on Tuesay. I'll have appointments the next two Tuesdays in GJ, so I can go then, too. It was wonderful. I just love that group. In the summer when I'm busier, I may go to Bosom Buddies in Montrose which is closer. I encourage any of you if you have a support group you can attend, it might really be worth it.
I just had two wonderful friends come visit from Salida - Barb Hearte-Crossan and Sharon Rowe. They helped me weed my front flower bed which I usually get started on in the spring and get too busy to ever finish. I want to plant hollyhocks there - I think they'll look good. Anyone have any experience with them? The deer will probably eat them, but I'm gonna try anyway. We had many good "girl talks" during our two days. This weekend, I will see good friends that I met 28 years ago at University of New Mexico in the geology department. We're all big talkers, so this will be a major blabfest! Our "beaus" are joining us. They're going to golf, hike, and rockhound. On Sunday, we're going to the Harding Pegmatite near Taos, where we all went on our mineralogy field trip back in 1978.
I think my hair loss has stopped. I had plenty of hair, so I can't complain - still have plenty left. Tammy, my hairdresser, gave me a really cute short haircut. I really don't mind too much if ultimately I lose all my hair. I can have some fun with that - a redhead one day, a blonde the next, brunette, curly, straight, fro, etc. One friend suggested that I get a long, blonde, curly wig and a push-up bra and go for the Dolly Parton look. I may actually need more a winch or block & tackle at this point, if you know what I mean. I also love hats and may take to wearing matching gloves if I get to that point. I always kind of regretted that I didn't get to live in the 40's when those were in style. I can always paint my head, too! And scarves!
I want to thank everyone who has offered prayers and support. You've all been so wonderful. I think your prayers are working. I am actually very lucky - there are people on the cholangiocarcinoma.org website that are going through so much with their treatments and their tumors. If you have any extra prayers, please remember my cohorts in this battle.
I'm hoping that I'm being "melodramatic" in some of my concerns about leaving this world before I'm ready. But if I don't beat these cancerous turds in my liver, I plan to be the "greeter" at the Pearly Gates, kind of like those ladies at Wal-Mart. I'll be there to greet you when you get there. (After I go find George Harrison, John Lennon, and Jimi Hendrix, of course.) I'm hoping to err on the drama queen side. I hope someday someone from the Humane Society says, "Well, she told us her odds weren't that good so she quit the Board, and now look at her, still here five years later."
God, you can have my hair. Just leave me on this earth. I'm having too much fun.
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