Sunday, February 15, 2009

Not the news we were expecting

Brian got the hiccups after his surgery. He complained about them so the nurse gave him Thorazine. (Note to self - never again) He went into la-la land big time. He thought he was on a cruise...in Springfield...Massachussetts...where they had taken a wall out of our room...and on and on and on. He was really over the edge. Pulled out his IV once and tried it a second time. It is funny (well, not the IV part) now to look back on, but it was kind of scary while it was happening. This was while the wireless Internet access was down at the hospital as well. Who knew I had come to be so dependent on electronic communication!?

So, Monday the surgeon came in and gave us the news we weren't expecting and didn't want to hear. The pathology report came back positive for cancer in the mass that was taken out. We should have been expecting it, but weren't - I mean just Friday the surgeon said he looked "pristine" and the oncologist was just there for a "social visit." We got a copy of the report and it looks like there were three separate tumors - of which two were not seen on a PET scan the 22nd of December. They were around 5-6 cm in size. Sobering news when after the Dec. 22 PET we all thought things were looking up, the tumor we were fighting was shrinking and there was no new activity. His CEA levels (a blood report which shows signs of cancer activity) were also not rising.

So, what to do now? Go home and get healed from the surgery. We are working on that. Brian got to come home last Thursday. He is resting a lot, eating small meals. We have been studying the literature from the dietitian about how he should and shouldn't eat. Everything we learned from Sloan during our year as the Move It! family has to be reversed for Brian. Less fiber, less raw fruit and vegetables, etc. Well, not everything. He needs to eat a bunch of smaller meals, because he has less intestine to do the work - less time in the intestine to absorb nutrients. He also is not supposed to drink while eating...how do you do that? I always have to swallow my food with some drink. Supposed to wait a half hour to an hour.

The chemo regimen will be a bit more intense now. He gets this week off, then back at it. He hasn't had any treatments for about six weeks. His new regimen will be something every week. Before he was every other week for six months, a total of twelve treatments. This time the doctor didn't say for how long. I think he said Brian would be in some kind of treatment always due to the aggressive nature of his cancer. That is something I have to ask when we go for his appt.

So, we will have a new version of normal in the house. Although my life seems very scattered, we do have a schedule and try to keep to it. Certain things happen on certain days. I have to work on what is best to keep and what can go away. Everyone says to take care of myself...but what that actually means is different in every person's head. So, taking stock in how to take care of myself while being there for my husband, making life happen for the girls and trying to maintain my job is what I am trying to work out now.

Keep us in your thoughts and prayers as we embark on this newest version of our journey. Stop by and say hi, give us a call or a text. If you see me out running, it is okay to ask about Brian...and it is okay if sometimes I just keep running and don't answer your question or change the subject. It doesn't mean I don't hear you, or that I am mad at you for asking. It just means that sometimes I need to talk and sometimes I don't. Sometimes I just need to know that you want to know and that you still like me if I don't answer. Thanks.