Saturday, September 23, 2006
The long wait
This has been one of those weeks where I have had to try hard to remind myself that, despite my efforts at positive thinking, I cannot control all that I would like to. If only I had been able to start the new treatment this week, if only I did not have to feel like I am wasting time - precious time that I feel I can't afford....I had another paracentesis, which got rid of about 5 pounds of fluid this week, and may have another next week.Despite the waiting and the fears about progression of my disease, I have been able to eat enough and be physically active enough that I don't feel like I am debilitated. So there is something I have been able to control - something positive.
Here's another positive - it has given me time to do more research on the drug therapy I will be receiving, and what I have read has made me even more optimistic.
Let's see....what else? Well, I've gotten through some more boxes that needed sorting and things thrown away - that's a definite positive! I've made some progress organizing my computer photo albums, and printed out some of the photos. I've sorted through files and organized papers - more throwing away!
And let's see - I'l have time next week to do some more!
The latest information I have from the clinical trial nurse is that Karen and I will have to be at Wake Forest/Baptist Hospital early in the morning on Monday, October 2 for the initial procedure which will be placement of the intra-abdominal catheter and drainage of the fluid (this is not as painful as it sounds), blood work, EKG and chest X-ray.
Then on Tuesday, I will probably be admitted to the hospital for the drug administration and observation, which I imagine will take most of the day. There is an uncomfortable expected reaction known as the "cytokine release" effect that is due to the activation of the immune system and killing of cancer cells. This tends to be the worst with the first dose. It is described as an intense flu-like reaction. The reaction is pretreated with ibuprofen and fluids.
My second treatment will be on Friday that week, and Karen and I plan to stay in the area rather than make the 3 hour drive back and forth Wednesday or Thursday. If all goes well with Tuesday's treatment, I am told, I will be admitted to the "day hospital" for Friday's round.
My third and 4th treatments will be the following week, Tuesday and Friday. That will be the end of the treatments, and then I will have to go back for 5 follow up visits over the next 6 months.
The treatment is designed to stop the production of fluid in the abdominal cavity during the course of the two weeks of treatment and for, hopefully, many months after. If I am fortunate, there may be a longer-term immunity. I hope that will happen, but at the very least, this will give me more time without fluid accumulation and perhaps a chance to do other treatments if warranted.
