Wednesday, May 24, 2006

Started Chemo Yesterday

Robert & I went to see Dr. Bergen yesterday. We ruled out starting another clinical trial. He suggested chemo and asked if I wanted to start right away. So I had my first infusion of Gemzar (gemcitabine) which only took about 30 minutes, although we had to wait around a bit to get started as I wasn't scheduled to start yesterday. The infusion room at St. Mary's Oncology Center is really nice. They have comfortable chairs which are heated and have magic fingers. There's TV screens at each chair and headphones. There was even a therapy dog walking around the room.

We decided to start with a single agent and see how it goes. I'll be having chemo once a week for 6 - 7 weeks provided my platelets stay where they need to be. So far I have no side effects of nausea, although I'm taking an anti-nausea med, and have several other anit-nausea back-up meds. They gave me steroids yesterday and I'll take some of those this week, as well as an antibiotic. I have had flu-like symptoms since going off the clinical trial, which Dr. Bergen thinks is probably "tumor fever". I was feeling really run down last week, and I had a hectic week with the bookstore, so if you haven't heard from recently, it's because I was busy with work and just resting when I could. Anyway, the antibiotic is in case my flu symptoms aren't from tumor fever. There has been a bug going around Ouray, but frankly, I had these run-down feelings back in March before I started the clinical trial med and the steroids for the rash.

I'm actually amazed at how much better I started feeling even yesterday afternoon. I think the steroid is helping. I don't feel any nausea at all, although I felt it just mildly yesterday evening. I may have some side effects 36 - 48 hours after infusion when the platelet level may drop. I have to be very careful to avoid cuts or injury because the chemo will prevent healing.

Kay, my support group leader, is a big believer in visualization and imaginining our treatment working and visualizing healing. So I've been trying to focus on that. Robert said he visualizes little "Pac Men" in my body gobbling up my cancer.

I am proud to tell you that I received an award from the Elks Club on Saturday night for "Citizen of the Year". They were impressed with how I keep volunteering in the community despite my health challenges. I am very honored to receive this award.

Robert & I are in Telluride today and tonight, so once I finish the blog post, I'll have to go. I won't be able to check e-mail or blog comments for a few days.

Just up here in Colorado, appreciative of everyone's prayers and support. And visualizing those Pac Men gobbling up my cancer!

Thursday, May 18, 2006

Next Step: Chemo or Clinical Trial

Robert & I saw my oncologist on Tuesday. We discussed several clinical trials; both Dr. Bergen and I had done research and we compared notes. There is one trial that he thinks might have merit, so he was going to investigate further. We discussed chemo options as well. We meet again next Tuesday to discuss which road I'll take. In the chemo realm, he is in favor of starting with Gemzar alone, but he asked me to think about how aggressive an approach I want to take with the chemo. Gemzar (gemcitabine) is well tolerated. Typically, you don't lose your hair and their are minimal side effects.

My liver is enlarged on both the right and left sides. There is some indication that there is liver damage. My bilirubin is still working okay, but when that stops you get jaundice and have to get a stent. My right side hurts most days. The liver itself doesn't have nerve endings, but the "capsule" which encases the liver does. Usually, Ibuprofen works on relieving that pain. I asked Dr. Bergen some hard questions about life expectancy and how the disease will affect me should it progress.

I attended the last portion of the cancer support group for women. Kay, our leader, firmly believes in miracles, so that is what I'm hoping for in my fight with cholangiocarcinoma.

We went to see one of my case managers at my insurance company after seeing the oncologist. We also got a pair of my crocs fixed. One of the grommets had come fallen out of a pair. We found a nurse's supply place that sells them for the best price we've found, and they had extra replacement grommets.

We also went by Carlson Memorials and ordered our "headstone" for our cemetary plot. We are both planning to be cremated, so in Ouray we can have one plot. We actually opted for a bench made out of a South Dakota granite. Our ashes will actually go in the base of the bench. The bench will have our family name engraved on the side, and on top of the bench we'll have our names, dates, etc. with some artwork.

We also ran several more errands up in Grand Junction on Tuesday and had dinner with friends. Yesterday, I had two booths at Taste of Ouray: one for the bookstore and one for the Humane Society. Later today, I will set up the two booths for a "Women In Construction" conference coming to Ouray this weekend. Robert helped me a bunch yesterday as I'm sure he will today. Last night I was exhausted. I slept a long time (for me) last night, but I know I'll be pooped again this evening.

So that is where I'm at now. I'm just up here in Colorado praying for a miracle.

Monday, May 15, 2006

Today in Ouray

Today I had my wonderful hubby, Robert, bring the digital camera up to the bookstore. The mountain behind me looking south on Main Street is Mt. Hayden, really the lesser mountain of all you can see from Ouray. Of course, that's Robert in the picture with me.

Tomorrow we see Dr. Bergen, my oncologist, in Grand Junction, and we'll know more about my next plan of attack.

Meanwhile, I'm just up here in Colorado, selling a few books.

Sunday, May 14, 2006

Shoe Therapy

Yesterday, I did go with my husband on his rockhounding trip outside of Grand Junction. He didn't find much, but I know he loves to get out there and dig for mineral specimens. I stayed at the the truck and read, wrote, and napped. Then we ran some errands in Grand Junction. I got three new pairs of Crocs - ocean blue, sage green, and bright purple. This "retail shoe therapy" always helps me to get over bad news from the oncologist. Took three pair this time. I almost got red, too, but I have other red shoes so I'm not in such a hurry for red or any neutral color of Crocs.

By the way, Happy Mother's Day to anyone out there who is a mother, stepmother, or like a mother to somebody.

We tried to eat as healthy as possible yesterday, although I did drink part of a beer out in the field - a few other friends were there and for some reason, beer just sounded good. After a salad at Chili's, we went to the Beyond Juice place and split a fruit smoothie for dessert.

I have found three possibilities for new clinical trials. All involve chemo with something else - heat, radiation, or another drug. I'll have a lot more questions before I try another clinical trial. I don't think I can start any of them until I'm off the sorafenib for one month which would be roughly June 12th. I don't know what to think of chemo - it seems to have such a low rate of success with cholangiocarcinoma, yet several people on the website have had good results. If I'm not going to live that much longer, I don't know if I want to spend what time I have left dealing with the side effects of chemo. I'll know more Tuesday when I see the oncologist. I don't know how many tumors I can get in my liver and how long I can live with the little bastards, but if sheer will to live works, then I will be here a long time. Everyone says I volunteer too much or should say no more often. Well, I'm not volunteering to go to heaven so soon - I'm saying no. God can get someone else to be the greeter up in heaven.

Just up here in Colorado wearing new Crocs and hitting the "Override" button.

Friday, May 12, 2006

Disease Progression, Removed from Trial

My oncologist called me today to give me the results of my most recent CT-scan done this past Tuesday. My four tumors have doubled in size from 1" to 2" (from pig turds to horse turds) plus several new little ones (rat turds). The clinical trial only allows for a 20% increase in tumor size, so I was booted off the trial.

I am so disappointed. I wish I'd had my last scan the day before I started on the trial instead of one month before I started on it. Then I was only on the med for 2 weeks, then off two, then back at reduced dosage for three weeks while on a steroid that is on the list of drugs that interferes with the clinical trial med. They don't take any of this into account.

So my advice to you is this. If you go on a clinical trial, try to have a CT-scan right before you start on the trial.

So we're looking for another clinical trial or to go onto chemo. I see Dr. Bergen, my oncologist, next Tuesday. I will also go to my support group if I get out in time. I went last Tuesday and really enjoyed it. I am also going to see my case manager at my health insurance company. I did find out that they cover my prescriptions once I meet the deductible.

I also saw Dr. Kane in Montrose on Monday. She said she would have also suggested the clinical trial for me. She was very nice. I don't know if I'll see her anymore if I'm not going to be in the trial. She and I also discussed chemo options.

Well, I feel really devastated today. I'll have to spend some time talking myself out of this. I'm going to try to do better with my diet and exercise. Tomorrow we are going on a field trip. I may stay home and catch up on some work, or just take it with me and work on it in the car.

Just up here in Colorado wondering if these damn tumors are ever going to give me a break.

Monday, May 08, 2006

Could Be Good, Could Be Bad

Dr. Bergen called me last Friday as we were on our way to Santa Fe for the weekend. (We had a great time by the way.) He caught us in Durango. He told me he was concerned about my CA19-9 tumor marker. It has gone from a low of 91 last December just after surgery, to a new high for me of 3,643 last week. He is concerned that this means "disease progression". But it could also mean that the Sorafenib is working, and as the tumors or cancer dies, it's dumping a lot of CA19-9 in my bloodstream. We'll certainly hope for the later.

Our support group leader in Grand Junction, Kay, says there are miracles everyday and to have hope and stay positive, which I think I do a pretty good job of. However, I did feel a little edgy this weekend knowing I have a scan Tuesday and worried that they'll find a "sweet potato" inside my liver. Or a gilion "cat turds". (I don't call tumors hairballs anymore, I call them turds.) Okay, I'm going to quit "borrowing trouble", as my husband Robert puts it, and not worry until I need to. The scan is tomorrow and we'll get the results a week later when I meet with Dr. Bergen. I always have to prepare for bad news just in case. If I go in thinking everything will be fine, and it's not, I really fall apart. We can always go to the mall and get me some blue or green Crocs.

Today, I see Dr. Madeline Kane of CU Anschutz Cancer Center to see about transfering me to CU for the clinical trial which they are now enrolled in. (Dr. Kane comes to Montrose once a month which is just 45 minutes away. Denver is a 6 hour drive.) Dr. Bergen says he trained under Dr. Kane, and he thinks very highly of her. Says she's one of the best GI oncologists in the state and will probably retire soon.

So I must run and get "gussied up" for my new doctor. I hope all of you are well, and as always thanks for all the good things. I owe several of you phone calls and hope to catch up this week.

Just up here in Colorado sending positive turd-zapping energy to my liver.

Thursday, May 04, 2006

Caroline, the Drama Queen

Tonight I went to the school play, and it was fabulous! They did "Radium Girls" about women in the 1920's who worked painting clock dials with radium paint and died of cancer - hit a little close to home. I was so impressed with the high school kids; all of them were good, but some of them were exceptional - one of them is only a freshman. Their teacher/director Nancy Nixon will direct the melodrama that I will be in this summer: August 2nd - 4th for anyone who wants to come. The play tonight made me so excited about my "acting job" this summer - the proceeds go toward scholarships and to fund other projects that WISE (Women In Support of Education, formerly a local chapter of AAUW) awards. We do the melodrama every other year, so I'm glad it's falling this year.

I saw Dr. Gates, my GP, on Tuesday. I'm doing pretty good. I asked if we could increase the sorafenib, but I was told by the clinical trial folks that once you go down, they don't let you go back up in dosage. Bummer. But it seems to be working for me. I have a little bit of rash which mostly consists of a few pimple-like bumps on my legs, and unfortunately, two on my rear end. I have some hand-foot syndrome which means I have to be careful about being on my feet. I took my last steroid yesterday, but I still have lots of energy. I went back to the bookstore tonight after the play and finished up some work there. We leave town tomorrow, and some things just had to get done tonight. I also love my bookstore, so I love being there. I will have to take a sleepping pill. I guess I just get too excited by life, and it irritates me that I have to spend any time sleeping.

My CA19-9 tumor marker was 3,643 this week. It was 1000-something the time before. It is a pancreatic tumor marker that they track on cholangio patients, too. It bounces around, but I think this may be the highest it's ever been. Some of my liver enzymes are slightly up, but not enough to have to go off the trial. I may just make it. This just may work.

A hospice-nurse friend of mine told me that if I ever have to start paying for this drug, it'll cost about $15,000 for Nexofar (a brand name for sorafenib). I about died. I asked the clinical trial folks about this today, and they said that's about right, but it'll be a long timebefore it ever gets approved for cholangio, and they doubted I'd ever have to pay for it. It still has to go through Phase II and then Phase III testing and then probably something else. As long as it's working for me, they'll let me stay on it indefinitely.

I'm still trying to figure out if I have Rx insurance. I thought I didn't - my premium is only $197/month, and I declined the Rx rider which the letter said wasn't available to HSA high-deductible plan members. But then I called Rocky Mountain Health Plans this week because I wanted to make sure I got it at renewal on July 1st, and the girl told me I DID have coverage once I met my deductible of $5,000 which I think I've already hit. I called last year, and they told me I didn't have Rx coverage. I'm going to try to submit an Rx claim - that'll tell me for sure. She told me I was too late to submit last year's. That pissed me off. I still don't think I have Rx coverage. I'm going to go to the RMHP office in GJ next week in person to get to the bottom this. I also need to find out if they're going to raise my premium. I'm on an individual policy, and I've been told it can go up, a lot. I can go to Cover Colorado, the last chance health insurance company in Colorado. My husband is on it, but it's not as good as RMHP, but he does have Rx coverage, although his premium is almost double mine. I can still deduct medical expenses on my tax return even though some run through an HSA. I probably won't pay taxes for a long time with the medical costs. I keep every receipt, but then again, I was an accountant in a former life. By the way, the good people of Ouray, actually the Elks, had a fundraiser for me last January which really helped us out, so we are in good shape.

I also went to a support group for women with cancer at St. Mary's in Grand Junction on Tuesay. I'll have appointments the next two Tuesdays in GJ, so I can go then, too. It was wonderful. I just love that group. In the summer when I'm busier, I may go to Bosom Buddies in Montrose which is closer. I encourage any of you if you have a support group you can attend, it might really be worth it.

I just had two wonderful friends come visit from Salida - Barb Hearte-Crossan and Sharon Rowe. They helped me weed my front flower bed which I usually get started on in the spring and get too busy to ever finish. I want to plant hollyhocks there - I think they'll look good. Anyone have any experience with them? The deer will probably eat them, but I'm gonna try anyway. We had many good "girl talks" during our two days. This weekend, I will see good friends that I met 28 years ago at University of New Mexico in the geology department. We're all big talkers, so this will be a major blabfest! Our "beaus" are joining us. They're going to golf, hike, and rockhound. On Sunday, we're going to the Harding Pegmatite near Taos, where we all went on our mineralogy field trip back in 1978.

I think my hair loss has stopped. I had plenty of hair, so I can't complain - still have plenty left. Tammy, my hairdresser, gave me a really cute short haircut. I really don't mind too much if ultimately I lose all my hair. I can have some fun with that - a redhead one day, a blonde the next, brunette, curly, straight, fro, etc. One friend suggested that I get a long, blonde, curly wig and a push-up bra and go for the Dolly Parton look. I may actually need more a winch or block & tackle at this point, if you know what I mean. I also love hats and may take to wearing matching gloves if I get to that point. I always kind of regretted that I didn't get to live in the 40's when those were in style. I can always paint my head, too! And scarves!

I want to thank everyone who has offered prayers and support. You've all been so wonderful. I think your prayers are working. I am actually very lucky - there are people on the website that are going through so much with their treatments and their tumors. If you have any extra prayers, please remember my cohorts in this battle.

I'm hoping that I'm being "melodramatic" in some of my concerns about leaving this world before I'm ready. But if I don't beat these cancerous turds in my liver, I plan to be the "greeter" at the Pearly Gates, kind of like those ladies at Wal-Mart. I'll be there to greet you when you get there. (After I go find George Harrison, John Lennon, and Jimi Hendrix, of course.) I'm hoping to err on the drama queen side. I hope someday someone from the Humane Society says, "Well, she told us her odds weren't that good so she quit the Board, and now look at her, still here five years later."

God, you can have my hair. Just leave me on this earth. I'm having too much fun.