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

Wednesday, July 05, 2006

Xeloda Suspended, Avastin Coming, Headed to Taos

I had my seventh infusion of Gemzar on Monday and get next week off of chemo - yeah! I was taking Xeloda orally until this morning. I developed mouth sores and hand-foot syndrome. (It probably didn't help that I worked 13 hours yesterday in the bookstore although I tried to stay off my feet. The Fourth of July is one of our biggest retail days of the year, so I really needed to be there from open to close, but I did have some help, too.) Anyway, Dr. Bergen said that I should quit taking the Xeloda due to the side effects, but he has gotten Avastin approved by my insurance company which he wants to start when I resume chemo week after next. I believe it will be a drug delivered intraveneously as well. It's my understanding that it is used mostly for colon cancer. I'll find out more on July 18th.

I am headed to Taos, New Mexico for a writing workshop, and my good friend Jody (from Denver) is going to drive me there and stay with me during my week of classes. I'm taking beginning screenwriting and beginning memoir. I'm planning to work with the film class from Ouray High School next year on a film about my cancer experience. Robert will drive me to Salida on Friday, and we'll meet Jody there and have lunch with our friends Barb & Pete who live in Salida. I'm very grateful that Jody is willing to be my travelling companion.

I have had that queasy feeling somewhat today and some tiredness, but not as bad as in some past weeks. They took blood on Monday for the tumor marker, but as of this morning, they didn't have the results yet. Hemoglobin is back down to 11.7.

It's been raining here which is a good thing. The fireworks were beautiful last night.

Well, it's late and I have a million things to do tomorrow before I leave town. I will try to keep my blog updated while I'm gone next week.

Just up here in Colorado selling books - making money while the tourists are here!

Sincerely, Caroline