Friday, December 29, 2006

Happy New Year!

Happy New Year, y'all! Looks like I'm going to last into 2007. Don't know if I'll make it to 2008, but I would like to be around for the next presidential election. I wonder how early I can absentee vote.

We went to Grand Junction on Wednesday. I had a Gemzar infusion. My red blood cells/hemoglobin count was low, so I got an Aranesp shot to stimulate the bone marrow to produce red blood cells. I got a larger dose of steroids again, I think because my weight has been dropping a little bit - down to 137.5 pounds, so I've been pigging out lately. White blood cells and platelets were okay, and liver enzymes mostly good. Tumor marker is down to 2946 which is still really high, but at least it's down from last week. It was really busy in the infusion area this week - trying to fit five days of patients into four since Monday was a holiday. We go back again next week, but Dr. Bergen will be gone and I'll see another doctor. I only got infused this week - Dr. Bergen had 19 patients that day, so I didn't see him. I'll be getting a CT-scan about the second week of January.

Felt good yesterday from the steroids - I did bookkeeping from 5pm to midnight at (with a dinner break for a big hamburger), and then went home and read 'til 3:00 am. Robert got me for Christmas a copy of Cynthia Lennon's book "A Twist of Lennon" which came out in the late 70's. She is John Lennon's first wife. I had to read the last chapter about Yoko Ono first. Cyn was really gracious about what happened.

My bowling team (Mike & the Harem) is tied for first place with the Tow-Ho's. (The Duces and the Pecks are on the Tow-Ho's - Steve Duce is partners in the service station in town.) Tied for second are Mixed Nuts and Hawaiin Heat. I think the OJ's are in third, then the MAKK Daddies and Team #2 tied for fourth. There's only seven teams in the league and we're all pretty close. I'm hoping we can hold our lead and finish in first so I can get my picture on the wall of the Elks Lodge, fair & square. Some ambition - eh? We have three games left starting next Tuesday night. There's a private pot-luck party there tonight with bowling that I hope I can go to. Don't know if I'll hit my chemo slump by tonight or not.

On New Year's Eve, we've been invited to a friend's house on Log Hill for dinner. Moosie and Jim have just gotten engaged - yea! Moosie's sons are in town, and I am looking forward to seeing them and hear how their college experiences are going.

We took Ian to the airport on Wednesday when we were in GJ for my chemo. He made it home quite easily and his bag was one of the first off the plane. His bag got to Ouray on Christmas morning very early. The three of us went outside to meet the truck.

Robert is busy winding down The Sandman shop. We are getting things situated at the mineral showroom for and wrapping up 2006 bookkeeping.

Congratulations to my sister Diane who passed a kidney stone last week. I think this is the fourth episode she's had with kidney stones since high school. In that first incident, she was in terrible pain, and we were getting ready to take her to the emergency room. My mother was try to sew a hole in the toe of her hosiery and ended up stepping on the needle in the commotion, so we had two emergencies.

Just up here in Colorado looking forward to the fireworks on New Year's Eve at midnight. Hope I can stay up that late - usually the noise wakes you up. It's really loud and reverberates off the mountain side.

Sincerely, Caroline

Sunday, December 24, 2006

Ian's Here! Last Chemo Treatment

We went last Thursday to Grand Junction (GJ) for my chemo. My blood chemistry was improved, so I was able to have Gemzar and Avastin. I got a bigger dose of steroids than usual before the infusion, so I felt good on Thursday. But yesterday, I felt pretty rotten - headache, fatigue, chills, achy. My tumor marker was up to 3100+ this week, and I never heard what my liver enzymes were, but they must have been okay since I got the chemo.

I did open my husband's store yesteray in the afternoon and had some business.

Robert went to GJ yesterday to pick up his son, Ian, who had quite an experience flying out of Denver yesterday morning. His flight was scheduled to leave at 9:30am, and he arrived at DIA at 5:45am. He wasn't sure he would get through security in time to catch his flight - the line was wound around the airport twice. He made it to the gate on time as his flight had been delayed. Then he was told his flight had already left, then he was told, no, it hadn't. Anyway, he made it to GJ about 12:40pm, but his luggage has yet to arrive. Robert & Ian waited around a while to see if it would show up on the next flight, but it didn't. But at least he made it!

I'm feeling better this morning, but I'm still staying home doing some paperwork. I'm not doing my radio show this afternoon - just don't have the energy. We will put our tree up tonight and decorate it now that Ian is here.

Robert & Ian will prepare our vegan feast, and I will open the bookstore for a while in the morning so we can get newspapers and maybe be there for anyone who needs a last minute gift. Then we'll have our meal and then reopen the store in the afternoon. The Beaumont Hotel, where our store is located, is serving Christmas dinner, and it's fun to see people coming through all dressed up and happy. Also, there's football on tomorrow, so we want to provide a place for people to go if they need a break from that or their families.

It snowed a little bit this morning, and we have quite a lot of snow on the ground. There are little mountains of snow around town where the road crews piled it up. Should be a good ski season and we can always use the moisture and snow pack.

Well, I suppose this will be my best Christmas ever. I'm still here and that's the biggest gift I could have wished for.

Hope your holidays are splendid and you and your families are safe and happy.

Just up here in Colorado, letting the chemo do it's work.

Sincerely, Caroline

Wednesday, December 20, 2006

Situation Improving, Including Bowling Score

I started feeling much better yesterday. My hip hasn't been hurting so I feel encouraged that the radiation did take care of the tumor in my hip bone. Mentally, I had gotten kind of down and was cranky, but that has passed, too.

I attended the Woman's Club meeting yesterday and Doris Sutton was named "Woman of the Year". (Last year I was the recipient.) Doris is probably in her 80's and just does amazing things - she grows plants to sell at the Woman's Club Rummage Sale and they sell out the first morning. She helped get the Woman's Club Mini Park set up with the City of Ouray and lobbied for new playground equipment. She collected a gillion aluminum cans to help pay for the elevator in the Community Center. When I was City Treasurer here and Jim Miller was mayor, she and Verena Jacobson weren't afraid to come in and tell the mayor what they thought about various issues, and Jim Miller - who could be rather gruff and not afraid to cut people off - would be totally disarmed. I used to tell both of them I wanted to be just like them when I grew up. Doris said yesterday she realized that she has grown over 100 different varieties of flowers in her time here since 1961.

Last year, when I was awarded "Woman of the Year", it was one of my first outings after surgery and I remember it was so hard to get all dressed up and leave the house. I didn't expect to be here one year later to see this award given again, so I am really thankful that I'm still alive and doing as well as I am.

So I went to bowling last night, and had I not gone, our team would have had to forfeit. (One person was out of town, another had a school function that her kids were in.) Our team is in 3rd place, half a game from 2nd, and one game out of 1st. I bowled 78, 112, 129 and my hip didn't hurt. (It hurts a little this morning.) My average is 94 and my hadicap is 86. We lost the first game by a bunch of points, took the second game by 3 points, and then won the last by a bunch. In overall points, we were ahead so we took the "4th game" which is based on total points.

I couldn't get my ball to go where I wanted it to in the first game, so in the second game, I started bending my knees more, worried that it might make my hip hurt, but it didn't. So by the third game I got several spares which was very gratifying. The team we bowled against has some excellent bowlers with low handicaps. One of them, Richard Gibson, picked up some incredible splits - I was very impressed.

We have had probably two feet of snow since Monday night. Not a good day to travel in Colorado, but this will be good for ski season and the snow pack. We have winter storm warnings and avalanche warnings in effect.

I have chemo tomorrow and the snow she be letting up by then.

I have to scoot. I started changing out the window displays in the store last night and I have to go finish them this morning.

Happy Holidays everyone. Just be glad you're hear.

Just up here in Colorado happy about my bowling game.

Sincerely, Caroline

Friday, December 15, 2006

More Photos

By the way, there are two more posts below this.

The first picture is our cat Biscuit who has found a sunny place in the living room.

The next photo is me when I played Verena Jacobson, the mining camp school teacher, in "Vignettes of History" in October. Next to me is Sue Hillhouse who portrayed Evalyn Walsh MacLean, daughter of Tom Walsh who became rich from the Camp Bird Mine in Ouray County. Evalyn owned the Hope Diamond at one point as well as the Washington Post.

The picture of me in the brown chair is the chemo area at St. Mary's. I love those chairs - they have heat and magic fingers. I was disappointed that I didn't get chemo this week, because that chair would have felt good on my chills and achy joints. And there's nothing like chemo to give you dark circles under your eyes. My hair is much thinner than it used to be and will stick out sideways most the time. Some mornings after I've had night sweats, I wake up looking like Don King - it will stick straight up. But hey, I still have hair.

Next is Robert at Bosque Del Apache Wildlife Refuge in New Mexico, a wonderful, peaceful place. I can't say enough nice things about my husband, and how he has helped me through all this cancer stuff. Honey, you're the best.

Following that, I am standing at the San Rafael Swell on I-70 in Utah on our drive to Las Vegas last month. Note to self: this sweater makes you look big.

Last but not least is a picture of Robert with our friends Duncan & Mary who visited us right before Thanksgiving on their way to New Mexico. Nice of them to come out of their way to see us. And for those of you who know Duncan, I'm proud to report that he can still make a restaurant lose money on "All You Can Eat" dinners. We went to the Bon-Ton here in town on all-you-can eat-pasta night, and he is the only person I've ever seen order a second bowl.

One other note. This past Tuesday we went up to Grand Junction the day before chemo, and we attended a luncheon for my support group up there. It was really wonderful to see everyone. We spent the night at Two Rivers Winery B&B - Robert's son Ian had given us a gift certificate there. We went to a matinee and saw "The Queen" which we thought was quite good. We went to dinner and were going to see another movie, but I started feeling really rotten, so we just went back to room and took it easy. I was freezing cold and climbed into bed with my clothes on including my hat, coat, and gloves.

Close Encounters with the Deer

On November 24th, the day after Thanksgiving, I was headed to the bookstore to check on an employee when I noticed a huge buck in my neighbor's yard.

He let me take a few pictures of him, and there were also a couple of does. So I went over to our yard and shook our apple tree so the deer could have the last little shriveled-up apples of the season.

So the deer came over to eat the apples which the buck particularly liked. (We'll call him Woodrow.) One of the does was pretty tame and would come very close to me. (We'll call her Daphne.) When the apples were gone, I turned around and the doe was right behind me. I thought she was going to goose me in the rear. So I went inside and got a few carrots which she would take right out of my hand. The buck didn't care much for the carrots. Yes, I know I shouldn't feed the deer, and I promise I won't do it again, but I couldn't help myself.

Then, Daphne must have assumed that we were on a first name basis, so she drug the Halloween pumpkin from our front porch and started in on it. We hadn't carved it - it was just a solid pumpkin. She proceeded to tear it shreds and ate almost all of it in one go. She had her head down inside the pumpkin, just chowing down.

Woodrow made noises that sounded like creaking wood, and he seemed quite interested in the doe. At one point he started to bugle, and I went inside! I didn't want to get too close to his antlers.

By the way, our yard is covered in several inches of snow again. We may not see the grass again until April or May.

No Chemo This Week

For the first time, I was not able to have chemo this week due to low platelets, low white blood cell count, and a fever. I've been having flu symptoms and feeling crummy off and on since chemo on December 6th which included the Zometa (bone strengthener) infusion. Dr. Bergen says that Zometa can make you feel like you have the flu, but it usually passes after one day. It first came on last Thursday night (Dec. 7th) after the steroids that I got with chemo wore off. It improved some over the weekend, but it came back Tuesday night.

Dr. Bergen said it might be the flu so I'm taking an antibiotic. It could be a blood infection and blood was drawn to do a culture, but today after 48 hours, nothing had shown up. It could also be "tumor fever". I'm wondering if it could be the Zemota. I think I also let myself get dehydrated.

Yesterday, I spent all day in bed with chills, low-grade fever, headache, joint pain, nausea, dizzyness, chest pain, abdominal pain, mouth sores, and fatigue. Today, I am better, but I had swollen and sore joints this morning, mostly my fingers and knees. I didn't eat or drink much yesterday and today I weighed 4 pounds less today than on Wednesday. So I've been eating and drinking and I'm feeling better, but I still have some swelling in my joints.

I saw Dr. Oldroyd (the radiation oncologist) today. Both he and Dr. Bergen don't think I need to have the hip surgery. We'll do a scan in a few months to know how the radiation did, but mostly pain is to be my guide and that has been subsiding.

On the plus side, my tumor marker is down to 2963 (from 4164) and my liver enzymes continue to look mostly good.

I will close this post and work on getting some photos on this blog in other posts.

Thanks, as ever, everyone for your care and concern.

Just up here in Colorado drinking Gatorade, decaf tea, and lots of water. Don't forget to drink your fluids!

Sincerely, Caroline

Monday, December 11, 2006

A Quick Note

Just wanted to do a brief update. We are very busy with a lot of year-end bookkeeping and other business-related issues, so if I don't post for a while, it's due to work. We are closing Robert's shop The Sandman on December 31st. Robert has an internet mineral business,, that will become his primary focus. He will still do some sand-pouring, and we will stock the bottles at the bookstore.

Last Friday, I saw Dr. Bynum, the orthopedic surgeon, about possibly having a pin put in my hip. We will discuss that with Dr. Bergen and Dr. Oldroyd this week. The cancer is not in a weight-bearing area at this time, but the bone apparently could break easily and we wouldn't have much left to work with if it did. I have a follow-up with the orthopedic doctor in January.

I had the Zemota infusion along with Gemzar last Wednesday. The Zemota is the bone strengthener. My bloodwork was still good. I felt good the first day after infusion and then went into a chemo slump on Thursday night and felt like I had the flu. Those symptoms have been improving everyday.

We see Dr. Bergen again this week on Wedensday, and I have a follow-up appointment with the radiation oncologist (Dr. Oldryod) on Friday. There's still pain in my hip, but it is gradually getting better. I'm being very careful not to slip on snow or ice.

My bowling team has a bye this week. It's getting very hectic with all the Christmas activities and holiday business coming upon us, but it's fun, too. Robert's son Ian is coming for the holidays, and we are looking forward to that. He eats a vegan diet, so we will have a healthy holiday meal.

Well, I gotta get back to work. Again, I owe many people a call, e-mail, or card. I'll be in touch soon. And I still want to get some pictures posted.

Thanks again for so many prayers and good thoughts.

Just up here in Colorado getting some work done.

Sincerely, Caroline

Tuesday, December 05, 2006

Tumor Marker 4164, Bowling Team 1/2 game out of First Place

My tumor marker last week was an all time record high for me - 4164. Normal is something like 0-60. Looks like I will be staying on the Gemzar, but I'll find out more tomorrow when I see the doctor.

In fact, I have to get up really early and I need to hit the hay. We see Dr. Bergen at 8:30 am and then we're driving over to Denver for a quick business trip. We'll be back home Thursday night.

I bowled a make-up game last night and I didn't do so good: 97, 75 (ugh!), 96. We are in 2nd place and are half a game behind the first place team. My average was 94, but it'll go down again.

We had a good time at our show in New Mexico last weekend. Nice people in that gem & mineral club.

I still need to get my deer pictures posted and will try to do that later this week.

Just up here in Colorado, catching up on some e-mail and staying up too late! Hope everyone is doing well out there.

Sincerely, Caroline

Friday, December 01, 2006

Headed to New Mexico

I have much to tell, but it's been hectic the last few weeks, so here is a quick post before we leave for Los Alamos, New Mexico today. We're doing a gem & mineral show there.

I saw Dr. Bergen again on Tuesday. My bloodwork was in good shape. I have a few things elevated, but he said that was due to the chemo and things looked pretty good in that areana. A nurse at the radiation clinic pointed out that my cholestrol is high, but Dr. Bergen said that it's not a concern at this point. He implied that the cancer will get me long before any heart disease.

I was infused with Gemzar as well as Avastin on Tuesday. I will have a bone strengthener infused next week which I will get once a month. The Avastin is done every other week. If my CA19-9 tumor marker is down, we will probably drop the Gemzar. I haven't gotten those results back yet. I was off the Gemzar for almost three weeks while doing radiation, so Dr. Bergen wants to see if it made a difference or not. If my tumor marker is down, then we'll assume the Gemzar isn't doing that much.

I did get to attend my support group briefly on Tuesday and it was nice to catch up with those gals.

I am taking the Xeloda orally still, but I had to suspend this week as my feet are swollen and tender again from hand-foot syndrome. I've been on my feet more this week at the bookstore and yes, I did bowl Wednesday night. The Avastin may be contributing as well.

I got my steroids before chemo so I felt good on Wednesday and bowled that night, even though my husband and doctors are trying to talk me out of it. My hip did really hurt the next day, but it hurts most of the time. I bowled 85, 126, and 92. We took all games. I think we are in second place at this point and closely chasing the first place team. I picked up one incredible split. I thought my ball was going to miss the middle pin, but it just nicked it and it gently rolled over and got the corner pin. I love it when that happens. Everyone was impressed!

I will be having some scans in the near future to check on the radiation progress and my hip bone, but nothing has been scheduled yet. I do see an orthopedic doctor on Dec. 8th and have a follow-up with the radiation oncologist on Dec. 15th.

We have a ton of snow here, so I am careful walking around. Last week, I had a wonderful close encounter with deer in the front yard and will get those pictures posted soon. I have some other pictures from this fall to post as well, but that'll have to wait until next week.

I have to scoot. I have a bunch of stuff to do this morning. Mary Lou, if you read this, I will call you this weekend. I'm sorry we missed you on our Socorro trip. I got your card.

To many friends and family, I am very behind in correspondence. Jan Ruby, I want to do lunch, I've just been really tired from the radiation, so I've been spending time resting, but I hope to catch up with you soon as you always bring my spirits up.

Okay, gotta run. Just up here in Colorado embracing the meds. I'm too busy to have cancer and let any side effects keep me down, but it's not always easy to get my body to do what I want it to do.

Sincerely, Caroline

Wednesday, November 22, 2006

Happy Thanksgivng!

Last year at this holdiay, I was really scared that it might be my last Thanksgiving. But I'm still here and very grateful.

Also, I will see my 52nd birthday this Saturday.

We got back Monday from our trip to Las Vegas which was fabulous. The Cirque du Soleil show was great. We also had lunch at the Quark Bar & Grille which has a Star Trek theme which I really enjoyed. We did go to see the Dancing Waters at the Bellagio as well. (They have an elaborate fountain that is choreographed to music - very relaxing to watch.) We had great weather. Thanks to my sisters Suzie and Diane and my brother-in-law Al for making this possible. Also, thanks to my childhood friend Beverly Bowden who came in from Ft. Worth to join us. I will have some pictures to post later on.

I had my last radiation on Friday, November 17th. I still have some pain in my hip which they think may have been aggravated by bowling. I don't bowl again until next week, so maybe I can bowl the first game or two and then have a sub step in or use my bowling average. I will see the radiation oncologist for a follow-up on December 15th.

I see Dr. Bergen (my oncologist) next Tuesday to start infused chemo again. (I'm still taking Xeloda orally and am able to stay on it longer before the hand-foot syndrome gets too bad.) I think he'll be doing Gemzar and Avastin next time. I will get to go to my support group that morning in Grand Junction, so that will be good. I expect that we will be setting up some future scans. I'm anxious to find out what my bloodwork results will be. I think I'm still anemic. I am tired a lot.

I am also scheduled to see an orthopedic doctor in Montrose on December 8th regarding the hip bone and whether or not I'll need a pin in my hip. I have fallen twice recently. Once was in Vegas when I tripped on a mat in the lobby and landed on my knees. I tripped yesterday at home over the vaccuum cleaner cord and landed on my right side. Fortunately, I didn't land on my left side either time. I am walking more slowly and watching the ground.

We just had some friends pass through town who spent the night last night - Duncan & Mary Edwards of North Carolina. They used to live in Denver. It was great to see them. We had hoped our friend Darlene Ritchie of Denver would be able to come for Thanksgiving, but she had some other issues come up and won't be able to join us, but we hope to catch up with her soon. Robert's son Ian will be out during Christmas and we will have a vegan holiday dinner.

Robert is going to cook for us for Thanksgiving - a turkey and some of the trimmings. We will eat early and then go open the book store. We actually enjoy being open on the holidays. People are in a good mood, there's no orders coming in, and it's a pretty relaxing day.

It's a gorgeous, sunny day in Ouray and looks like we'll have good weather for the rest of the week. Next weekend, we will be in Los Alamos, New Mexico for a gem & mineral show. I love this little club show - the members are so nice and the auxiliary that has the food concession does a great job of home cooking. The other dealers are very friendly, too.

We went to see the new James Bond movie in Vegas this weekend and it was good. We all felt the new actor is the best Bond since Sean Connery.

So that is it for now. I hope everyone has a beautiful Thanksgiving.

Just up here in Colorado enjoying the sunshine and watching the snow melt in our front yard.

Sincerely, Caroline

Tuesday, November 14, 2006

Seven Down, Three to Go

Here are some photos from the Bosque del Apache Wildlife Refuge in San Antonio, NM. Robert and I went there last Sunday morning. There were thousands of birds. The white ones are snow geese and the gray ones are sand hill cranes. I wish somehow I could have captured the sound of the birds - I especially like the crane's calls. I could have sat there all day listening to the birds. It is a very peaceful place.

We had a good time at the mineral symposium. We got to see many friends. We attended the talks and dinner on Saturday, but couldn't stay on Sunday for the lectures and auctions. We did the tail-gate show at the Super 8 Motel, and we were happy with our sales.

We stopped on our way home and saw friends in Durango. Ouray had gotten about a foot of snow while we were gone and coming over Red Mountain Pass was a bit treacherous.

My friend Nancy Wolkin of Ouray took me to radiation today. Alida Allison took me last week on Tuesday. Thanks ladies for the rides!

Okay, bowling scores. Last night, our team was tied for third place before we started to bowl. We took three of four games by a narrow margin against the second place team. I bowled 88, 100, 86 - almost the same as last week. My hip was getting sore by the third game despite taking Ibuprofen.

I get a lot of pain in my lower left abdomen just above the hip area and some pain in the hip bone. I've also been tired. I'll be done with radiation on Friday. We're off to Las Vegas after my Friday treatment to see the Beatles Love show by Cirque du Soleil. Yippee! We'll meet my sisters there and come home on Monday.

So that's it for now. My best to you all. Don't forget to have at least a little fun everyday. And for God's sake, don't forget to eat your fiber.

Just up here in Colorado, enjoying being snug at home on a snowy evening.

Sincerely, Caroline

Thursday, November 09, 2006

Four Down, Six to Go

I had my fourth radiation treatment this morning. It goes very quickly now. They've done scans and I have little dots tattooed on my hips. I do get pain in my left hip, and Ibuprofen helps, but I also got a prescription for Oxycodone which I'll probably take at night.

We saw Dr. Bergen yesterday, and he has suspended Gemzar infusions until after radiation is over. I next see him and have chemo on November 28th. It was one year ago yesterday that I first saw him, so I took him an anniversary card. I was diagnosed with cancer on Oct. 25th, 2005, and I'm still here.

The spotted appearance of my spleen turned out to be nothing. The gastroview that I drank before the CT scan last week and/or the injection before the bone scan to light up your bones may have caused it.

I am still taking the Xeloda orally. I do feel tired which I think both the chemo and radiation are causing.

We are leaving tomorrow after radiation for Socorro, New Mexico for a mineral symposium. We hope to get out to the Bosque del Apache bird refuge. There should be sand hill cranes and snow geese. I'm looking forward to getting away for a little bit.

I did bowl Monday night after my first radiation treatment. My thumb had two sore places on it, so I wore a glove which I think supressed my bowling scores: 89, 100, 80. My team did win three of four games. We were tied for fourth place as we began Monday night. The nurse at the radiation clinic gave me some latex gloves which I can wear to bowling if needed, but I'm also using them at night with bag balm and my hands are much improved.

We have seen bald eagles in the trees along the Uncompahgre River in Ridgway on three different occasions. One of the nice things about the trees being bare is being able to see all the bird's nests.

Well, I should scoot. I need to undo the Halloween window at the store and put winter sports books on display. It won't be long now until we'll have enough snow for XC skiing, snow-shoeing, downhill skiing, etc.

Just up here in Colorado enjoying a warm, sunny day.

Sincerely, Caroline

Thursday, November 02, 2006

Starting Radiation Next Week

We met with Dr. Oldroid, the radiation oncologist, today, and I will be starting radiation next Monday in Montrose for two weeks (Monday - Friday). We will have to alter our vacation plans, but we still plan to go to the New Mexico Mineral Symposium next weekend and the following weekend, we're meeting my sisters in Las Vegas to see the Cirque de Soleil Beatles show!

The radiation has a high chance of taking care of the cancer in my bone which is actually not in the ball. It's in the spur that is on the outside of the thigh. He said he did want to also target the hip socket as well because it's a hard place to get to, so he wants to take care of any cancer cells that might be there.

He did say that I don't have to give up bowling!

I have to run. I have book club tonight. This weekend I'm in another writing workshop taught by Mary Crow, Poet Laureate of Colorado.

Thanks everyone for your warm thoughts and wishes.

Just up here in Colorado, trying to get a fire started in the wood stove. Kind of chilly tonight.

Sincerely, Caroline

Wednesday, November 01, 2006

It's in My Bone, Damn It!

Had the scans today and they found cancer in my left hip bone - in the ball of the hip socket. When I walk, I could feel something there. The good news is that this is very treatable. The better news is that the tumors in my liver look stable. The possible bad news is that my spleen looks mottled or spotted on my CT- scan, but Dr. Bergen says that cancer rarely goes to the spleen. We'll have to wait for the written reports from the CT-scan radiologist.

I will have radiation for the bone, and we meet with a radiation radiologist tomorrow in Grand Junction (GJ). His name is Dr. Oldroid. (Robert says this is opposed to Dr. "New Droid". I think I'll just call him R2D2.) Anyway, they were going to send me to a radiologist in Motrose (which is 65 miles closer than GJ), but I have to have a "simulation" with a CT scan first so they can mark precisely on my body of where to direct the radiation. They don't have the equipment for that in Montrose, but I may be able to have my radiation treatments there. We're hoping the simulation can be worked in tomorrow in addition to meeting with the radiologist and possibly even the radiation itself. Dr. Bergen didn't give me chemo today in case I have radiation tomorrow. He says the two together can make you really sick, so we held off on the Gemzar infusion. He told me to keep taking Xeloda. (I had to suspend it last weekend as usual due to hand-foot syndrome which hit my hands more this time than my feet.)

We're not sure how many radiation treatments I'll have. I've heard it can be every day for two weeks, but another radiologist told Dr. Bergen they can possibly do it in one shot. We are supposed to go to New Mexico and Arizona for ten days leaving on Nov. 10th, and I'm hoping it won't interfere with this trip.

Dr. Bergen says we will be starting the Avastin and he also wants to infuse another drug once a month to strengthen the bone, but I can't remember the name of it. He said I need to be careful about falling as my bones will be more brittle. Guess I'm done with skiing for this lifetime. Rats! I also have an appointment with an orthopedic surgeon in Montrose. Dr. Bergen said we may want to put a pin in my hip bone which is a fairly minor procedure.

Robert has suggested I give up bowling, but I don't want to. I've decided that I'll just stand up straight and hurl the ball, overhanded if necessary (just kidding), OR just hold it between my legs and chunk down the lane. Our team was in third place before we started Tuesday night, but we lost three of four games, so I don't know where that will put us. I started off great. My average is 93 and I have an 87 handicap. I bowled a 124 in my first game (211 with hadicap), and then my hip started hurting and I bowled a 90 and then 75 (ugh!). The best and worst games of my season, but I calculated that the Tuesday night games still raise my average to 95. I've never know anyone who's broken their leg bowling, so I really don't want to give it up!

My hip pain had actually gone away for a few days before bowling, so I thought sure that nothing would turn up on the scan. No such luck. I did feel awful last Saturday morning from chemo and couldn't get to work until 11:30 am. My bones ached, my muscles ached, my organs ached. It hurt to open my eyes. Once I got to the bookstore, I just perched on the stool behind the counter and took it as easy as possible. When I woke up Sunday morning, I told Robert, "I feel much better!" Yesterday, I almost felt normal.

I need to do a few shout-outs to family members. To my cousins in Nebraska, I hope Tony has as speedy as recovery as possible. To my Mississippi in-laws, thank you for the wonderful blanket with the felted hearts! I just love it.

Just up here in Colorado going to the doctor a lot. Hey, now I get to check out the radiation department at St. Mary's. I think I've had the full cancer experience: surgery, clinical trial, chemo (both oral and infused), and now radiation. More fodder for my book.

I'm really not ready to leave this world yet. Cancer be damned!

Sincerely, Caroline

Thursday, October 26, 2006

Chemo Went Well Yesterday

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

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

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

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.

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.

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.

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.

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

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

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

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 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, 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

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

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

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

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

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

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

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.


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.

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.

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

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.

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!

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