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