Monday, October 27, 2008
First things first. Brian had a doctor's appointment today with his oncologist. This was a planned appointment from weeks ago assuming we were on the same Avastin and CPT-11 schedule. He was disappointed and surprised the surgeon had not called us to discuss surgery. He thought the surgery was an option seriously worth discussing with the surgeon. Brian explained that he did not want to have a surgery that would leave him with ANY further deficits and he said based on his discussion with the surgeon, the surgeon did not feel there would be. He felt like he had a clean shot to the area of enhancement.
The second point was discussion of what the area of enhancement is exactly. As you know from my many prior posts, with the brain there is NO WAY of knowing for sure, barring taking a sample surgically, exactly what the enhancement consists of. The board as a group collectively hypothesized last week that the area was growing tumor based on a few factors. The PetScan on Tuesday showed little activity leading to a conclusion that it would NOT be tumor activity. This is very difficult to decipher, I realize, as there are conflicting reports. The end result is that no one test is more definitive or conclusive over another necessarily. False negative PetScans of the brain occur often. Nothing is for sure.
So, we are right back to where we were last week. Waiting to hear from the surgeon. We have an appointment on Thursday if he does not call us prior to that. I am interested to hear whether or not HE thinks it is tumor or radiation effect.
Radiation effect simply does not make sense to me because of how quickly the enhancement occurred, because of how long it has been since surgery (18 months) and because of how large the area is. At this point in time, the enhancement is larger than the area that was radiated. The area that was radiated was small and concise. I told Brian I feel terrible, as though I am resisting what could be good news. When did that happen? He said he agreed. He didn't know how to take this news and was taking it in stride as well. Part of this is because of the problems Brian has had in the last two weeks which coincide with the timing of the growing enhancement.
From two weeks ago, Brian suffers from sporadic headaches which have lessened in the last three days. Also, Brian has been struggling with some thought processing - specifically numbers. His brain knows what he should do, but getting his body to execute it is another story - dialing a phone, basic computer functions, finding a radio station, etc. - it just isn't coming together. Also, his right side is weaker. His speech has deteriorated a bit, but not dramatically. Some moments are worse than others.
All in all, though, Brian continues to do pretty darn good relatively speaking. He refuses to take the elevator or let me get things for him if he is capable. He is in great spirits and I find him smiling often. Just gazing off and smiling. He tells me he is just happy. And yes, this happy is in the middle of assuming he is near death. We openly talk about it now. We openly discuss taking care of issues and ensuring we spend this time doing what he wants to do - what is best for our kids and our families, building memories, making the moment insanely special, and knocking off whatever he wants from his "bucket list." He says he is doing what he would want to do. He is spending time with me, his boys and our families. That is what he wants. And that is what makes him happy. His dignity and character right now speak worlds to the man Brian has always been.
We had a great weekend with Brian's family. We spent time together, enjoying each other and being with each other. It was nice. The first couple days, Brian was plagued with headaches. The last couple of days, you would barely know he was sicker. He spent many hours with his brothers. The boys had sleepovers with Mom and Dad at Grandma and Grandpa's and it was great. They got to see Ziggy the dog which always completes their weekend. It was incredibly enjoyable in between Brian's fatigue, headaches, and issues. We are learning to work around those and be flexible.
Well, I guess, the summary is keep us in your prayers for guidance. Brian and I both thought we were going into this appointment today to discuss that we did NOT want surgery, what chemo we would do next, IF ANY, and what to expect from here. Now, we are ready to discuss another surgery and neither of us know how we feel about it. We could use some wisdom.