Wednesday, December 31, 2008

End-of-Year Catchup

I have been remiss in my posting. Partly because we had family visiting over the holidays and partly because we were in limbo between appointments. Here's what's been happening.

My whole immediate family was here over the holidays. We haven't all been together in the same place at the same time for over 20 years. My brother and nephews drove out from Iowa. Mom and Dad flew out. We didn't exchange gifts as having us all together was gift enough. It was a great holiday. We were our usual silly selves, almost worthy of our own reality show. The Reller sense of humor is nothing if not different.

We spent 8 hours yesterday at the University of Colorado Hospital. They did blood/urine work and then an EKG. The creatinine levels can go up if the kidney function changes. I had an ultrasound to check this the day after Christmas. Anyway, they didn't like my numbers or my EKG, so I went to infusion for a couple liters of fluids. Then went and got retested. Things looked better so they sent me to radiology. After drinking two bottles of barium they called me back. Then I waited for quite awhile while they debated whether my levels precluded me from having the scan. Finally I was taken back. As soon as I was on my back, I threw up the second bottle of barium. My worst fear was that they wouldn't be able to do the scan and I'd have to go through all this again. Fortunately that wasn't the case. I got a call this morning from the hospital to schedule a liver biopsy on Jan 9, as that is part of the study. We are waiting on confirmation as to whether I am accepted into the medication part of the study.

We are now into pain management. Before we went to Mexico, I was having upper abdominal discomfort. Now it has moved beyond discomfort to pain. I'm taking time-released Oxycontin trying to stay at a steady level. It makes me a little tired, but I feel like I can function fairly well. So, don't read anything into my typos.

I have sent most of our Christmas cards and letters out electronically. We still have a few to write out and send. I'm still working on wedding thank-you cards. A girl can only do so much.

We have been needing to replace our bed for a long time. It is getting uncomfortable particularly with pain. So we ordered a Sleep-Number bed. I think that will help with comfort and getting a more restful sleep. I sleep a lot, so figure it's important to have a comfortable sleep. Also, got a set of 600 thread count sheets at 75% off. Should be pretty nice.

My plan is to continue working on my office. It's hard to get caught up, but I am making progress. I've been cut off from my remote access to work. It's kind of a bummer, because all I really did was check what's going on through the portal and look at the employee ads. But, I expected that, and I still talk to many people at work, I should be able to stay in the loop.

The rest of the day, I am going to laze and rest. The last couple of weeks, while being fun with family was also a little exhausting. It is good to go back to some semblance of 'normal'.

Happy 2009 to everyone and thanks for riding along on this journey. Love, Jane

Friday, December 19, 2008

Study

We met with a Dr. at Anschutz Cancer Pavillion at University of Colorado Hospital yesterday afternoon. He and his assistant reviewed my records. The assistant did a gross physical exam and asked questions. Then the doctor came in to talk. He had a Phase II study available for a drug called AZD0530 for people who have previously-treated advanced pancreatic cancer. The hope is that the study drug blocks the growth signals in tumor cells and may stop the tumor cells from spreading.

The side effects are not bad, and it requires a minimal amount of time. Two pills a day, blood work after two weeks, and each cycle lasting 28 days. There may be a CT scan before starting. There will be a tumor biopsy after the first two months. If things look good after two rounds I can just continue on it until it is no longer effective.

It looks much easier to work around than the Phase I studies I had looked at. I'm hoping that this will be my magic bullet. I am waiting for a call back to schedule my first appointment to sign the consent forms, etc. There will be only 5 people in this area participating in this study encompassing 36 people around the country. I told the Dr. to save me a seat.
So, hopefully next week I will have an appt set up to get the ball rolling.

I've been taking Percocet at night to relieve some upper abdominal discomfort. The Dr. told me to stop taking it as it has Tylenol in it and that is not good for my liver. He gave me a prescription for Oxycodone which doesn't have the Tylenol. He also said that I should be taking it to get my discomfort down to a static level, rather than suffering during the day and then only taking it at night. I told him that it would throw a curve into my independence and ability to be able to do things, as it can make me drowsy. He said that it's much easier to maintain a pain-control level by keeping it consistent and that perhaps I might have to give up a little independence. Later, he said that he has other drugs that are longer lasting and that might not have an impact on my driving, etc. We shall see.

My mother is in town, my brother and nephews are coming on Sunday, and my father will be here on Monday. We are looking forward to a fun family reunion for the holidays. I hope everyone reading this has a great holiday and I send best wishes for the new year.

Sunday, December 14, 2008

Hola!

We are back from Cozumel, Mexico. Got home about 10:30 just before the temps dropped and it started snowing. I got very emotional as we descended into Denver and on the drive home, that my temporary escape from reality was over. I could have stayed there for much longer.

The weather wasn't as good as I'd hoped, but not bad. We lost out on a few days of snorkeling because of high winds. We did get a jeep for a couple of days and drive around. We did swim and interact with dolphins. We have photos and video. It was awesome!

We had a nice room at the resort and met really nice people, both visitors and locals. It was truly a respite from the world here. Cozumel is still a really nice place. You can still see some of the damage from hurricane Wilma. Since my original visit in 1985, I was happy to hear that they have put a cap on new building, and have set aside areas as national parks which are protected.

I think could live there. But, here we are back in reality. I have two doctor appts this week, one with my regular oncologist and one with the study doctor. My mother comes in Thursday afternoon, and soon the holidays will be upon us.

Maybe I'll try to stay on Mexico time for awhile. Sigh!

Friday, December 5, 2008

Hasta La Vista, Baby!

WAY TOO EARLY on Sunday morning we will leave for Cozumel, Mexico for a week. The temps will be in the high 70s to mid-80s with scattered showers and reasonable humidity. I can't wait. We are finishing things around the house and packing tomorrow. Our housesitter will arrive tomorrow night since we leave so early.

We played pool on Wed. I only played an 8-ball match, but won my three games consecutively. I also received my Christmas present from Michael early. He got me a leather pool case. I got to pick it out. My other one was very cheap and the zipper was broken. Other than good health, I couldn't think of anything else that I really needed.

I saw my oncologist on Wed. Saw the nurse practitioner today. I had an abdominal ultrasound on Wed to make sure that my increased discomfort wasn't due to a blood clot in my liver. Everything looked good, except for some 'sludge' (a medical term?) in my gall bladder. I will start taking pancreatic enzymes to help my digestion and hopefully that will help the gall bladder and my abdominal issues. I'll see him the Monday after we return. My blood pressure has been a bit high and my blood a little thin, so I'll need to be checked out.

I'll be thinking about all of you while I am relaxing and reading. ??? Perhaps we'll take a couple small excursions, but we will do a lot of relaxing things. No offense, but I hope it is cold here and warms up the day we get back.

Monday, December 1, 2008

Post-poned Appointments

University Hospital called this morning to reschedule my Thursday appt. The doctor will be out of town. They wanted to schedule it for next week, but we will be in Mexico. Ole! So, now it's put out until 12/18, the day that my mother comes into town.

I am concerned about having been off treatment for about 2 months by that time. I am having increased abdominal discomfort and other distasteful things. I will see my oncologist on Wednesday to check things before we leave.

Needless to say, these recent changes have me a bit worried. I've asked to have blood drawn for a CA19-9, so we can see if my tumor marker numbers have increased drastically. If so, and the disease is moving right along, will I have time to be off proven medications to test out unproven medications?

Right now I feel as if I am in a race. I doubt I will win it, but I at least hope to go in the right direction.