Moving, Part 2

Having announced we have decided to move to Fern's until we can find a place in Missoula, we realized that we need to wait until next weekend. Wayne has chemo again next Friday, the 8th, so we checked with the doctor and decided it is best to wait that week.

He is also going to be titrating down on his tegretal, the epilepsy medicine that he has taken for years and years because it interferes with the chemo. They are wanting to do that over just one week, and so they may need to hospitalize him to safely do that. We asked the neurologist here to talk with Dr. Wilinski, the neurologist Wayne has seen for years and years at the Epilepsy Center at Harborview in Seattle. I am not sure she has talked to him and we haven't heard about when to start the taper. Theoretically, if he has enough of the new medication in his system, then it should go smoothly, but with Wayne and his epilepsy, it is never smooth, nor easy, nor textbook. The doctors always say he is really fragile with his epilepsy, meaning not that he is weak and fragile and hurts easily, just that he has seizures easily and they seem to be set off easily. I am nervous about this new med, especially because we will be so far away from Seattle. And given Wayne's cancer and all the side effects he already has from the radiation and chemo--not to mention the illness itself--I would rather he didn't have a seizure.

I am a bit concerned as well about him going off too quickly and going into status--which is having one seizure immediately following another or seizing for longer than a minute or two at a time. He has a history of this. When he was in the hospital following the first brain surgery they did so they could map out his brain, they needed him to have a seizure, so they put him on an exercise bike and lowered his tegretal and instead of getting one seizure, he had multiple seizures. And those seizures left him with Todd's paralysis--he couldn't feel the inside of his mouth so he was unable to speak clearly. (He also couldn't feel his food and the first morning he had it, he was eating sausage links for breakfast, and they stayed in his cheeks, until his cheeks puffed up like a chipmunk. Donna and Arlen came to visit that day so they may remember, and I think Karen was still there as well. I know that Mandy and I had been asleep because the status started in the middle of the night, but she woke up and got the nurses--and she was only seven. After that I don't think she went back to sleep at all. In all, he had 17 grand mal or partial grand mal seizures within a 12 hour framework. I am going to ask the neurologist here for a prescription for injectable Valium or ativan so that if he should go into status, we will have a way to get him out. It is a very scary thing for me, and I am hardly fazed by his seizures any longer. I just take them in stride.

On another note, I was able to talk with a retired oncologist about Wayne. He volunteers at a local agency called Wellness Place, a place of resources for people with cancer. They have books to borrow and free hats or scarves. They provide Ensure nutritional supplements free--two cases a month. They have all kinds of programs, including matching patients or family members with mentors, who can help process a lot of the information that we get. I told him how tired Wayne is, and he told me that decadron, the steroid he takes to keep his brain swelling under control, can cause him to be tired. As well, apparently tumors themselves cause tiredness. Top that with chemo that he started a week earlier than originally planned and the whole-brain radiation and it's no wonder he is so tired. It was great for me to have that explained so well. I know I have talked about his tiredness before, but this really made me understand. He is his usual cheery self though. He smiles and laughs, makes jokes and talks about growing old. He is positive all the time. And he never, ever, complains. I'm not sure how he does this, but I really admire his ability to do so.

We are really excited to get out of this dreadful motel. Wayne is looking forward to having a place to work on his quilting, and I am looking forward to practicing my cake decorating again. And we are both looking forward to getting to Montana and getting settled in a place of our own.