You know, some days I don't even know where to start...this was a very long and eventful day.

I picked Jon up at the hospital after work last night. They had drained his abdomen and he had an "inny" bellybutton for the first time in a long time. He felt good enough to go out to dinner and we were both ecstatic to be eating something other then hospital food (OK, really I only ate vending machine food for 5 days as the visitors cafe was closed every time I tried to eat there) Fresh vegetables never tasted so good in my life! Jon ate a good dinner and seemed in good spirits.

We awoke early for our day of doctors appointments only to find Jon's abdomen distended all over again. It seems the pericentisis only lasted about 12 hours. Very disappointing. His first appointment of the day was with Darren, the acupuncturist. There has been all kinds of controversy at SCTWC in Dr. Chue's absence so in addition to the acupuncture we talked about all of the politics of cancer. (can you believe it?) Darren tried some acupuncture points to reduce Jon's ascites and he seemed to rest comfortably during the hour. Next came Dr. Chen, it was kind of an odd visit. He had stopped by to see Jon earlier while I was making the Starbucks run for Jon's breakfast and then returned to talk with me. I'm not sure what happened in my absence but Dr. Chen seemed to have a bit of a chip on his shoulder. When I asked him how we should proceed he almost shrugged his shoulders. After a long discussion we agreed that the genetic testing needed to proceed to determine whether or not Erbutux is an option for Jon. Dr. Chen did not support the Xoloda or Revlimid as the Xoloda could potentially cause more GI bleeding and the Revlimid alone was not proven to be effective. He felt our best option was to wait until we were sure that the abdominal bleeding has stopped (which we are not) and to proceed with the POLF IV chemotherapy. Next came Dr. Reilly, the naturopath who was the high point of our day. He had some good dietary suggestions to control the ascites and some supplements to reduce the irritation and possible bleeding in Jon's GI tract. He agreed that we needed to be sure the bleeding has stopped before we continue any more treatment. He and I agreed that we should follow up with the GI specialist to see if there is additional testing to be done. Jon still has some dark stools from time to time and his hemoglobin and hematocrit have dropped slightly since he left the hospital. It is also possible that some of the tests would only detect the bleeding if it was actively occurring during the test. If his counts drop by the end of the week we may need to repeat the tests.

On the way home I called the hospital to get the name and telephone number of the GI specialist that treated him so we can schedule a follow up appointment. Of course, nothing is ever simple and I've been playing telephone tag with the staff all night. I expect to have the information we need by tomorrow.

Next came the Home Infusion Nurse at 4pm. She was an interesting women and on a normal day Jon would have enjoyed her personality. She is a sort of rough, redneck gal whose father hunter ducks and grew up with all brothers....they kind of gal I would think he could actually relate to! She was doing OK until she stuck the giant, wrong size needle into his port and sent him through the roof. Jon is never one to actually complain about pain so you know it must have been really bad. The only good thing I could say about that visit is that when Jon was being really difficult and irritable she said to him that she had a patient much younger than him with pancreatic cancer and three little girls who never behaved that way. I do think its always a good reminder to hear that someone has it worse of than ourselves.

Jon had a big long nap after that escapade while I grocery shopped and filled his prescription. He was in much better spirits when I arrive home (I did give him an oxycodone before I left) and we just finished dinner at about 9:30 pm. I did his first IV antibiotic infusion and it seemed to go well. He needs them twice a day for the next week.

So for now we just need to watch for any signs of bleeding, follow up with the lab and GI doctor. He is scheduled for chemotherapy next Tuesday and will receive it if he is stable enough.