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

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

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

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

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

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

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

First Performance Was a Success!

Last night was our first of three performances of the melodrama. Things went quite well, and we had a full house.

At our last few rehearsals, we were still making mistakes or forgetting lines, and some of the gals were getting tense. This is my fifth melodrama, so I know it always feels disorganized and crazy in rehearsal, but it all comes together once we have an audience. There were a few flubs last night, but nothing major. At the dress rehearsal on Tuesday night, I went totally blank at my opening scene. I couldn't remember my first line which I have rehearsed a million times. Better to forget at dress rehearsal than at the actual performance.

I did make one mistake in my costume changes. I have one scene where I fall off the ship and then come on back on again all wet, covered in seaweed, etc. I have a really short time to change clothes, wigs, and get enough water on me to be dripping wet. I had gone off stage after the first part of the scene and started changing quickly into my wet clothes and then realized I hadn't fallen off the boat yet! I still had to do one more scene in regular costume. So I was frantically changing back into my regular clothes and managed to get dressed in time. They don't give me the dumb blonde parts for nothing.

I hope to have some pictures to put on the blog by tomorrow. My cousin took pictures last night, and we'll probably get some more this evening.

Just up here in Colorado enjoying my week off from chemo and having my family in town.

Sincerely,
Caroline