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 cholangiocarcinoma.org 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.