Worst Week

I can say, without a doubt, that this week has been worse than any I have experienced to date. Worse than any of the biochemo treatment weeks for sure. And it all started out on what was supposed to be a positive note.

As you may remember from last week, Dr. Minor finally decided to give me a steroid, dexamethasone, to try to help reduce my double vision and speaking problems. But only maybe. I had not wanted anything until this point, as I have not wanted to take anything that could mess with my treatment. The chances are low, as this is supposedly a low wattage steroid, so I figured now was the time to give it a go.

Unfortunately, the steroid only really managed to give a whole lot of insomnia (about 3 hours of sleep per night). I started taking the pill on over the weekend, and received the OK to go from 4x/day to 2x/day on Monday. That was of no consequence either, so I stopped the treatment on Wednesday morning and Dr. Minor concurred. Since it did not cause the double vision or slurring to get better quickly, he felt it unlikely to work at all, anyway

It took me several more day (Friday night, to be precise) and a few atavans (sleeping and nauseau pills) to work the trick, and I am not sure that I am right as of this moment, just heading in the right direction (I hope).

To make matters worse, my double vision became worse. What I can see out of each eye is definitely now seperarte/different/less than it was before. Trust me, it is worse. My slurring of words seems to vary with how tired I am, but I can tell you that it is a lot of work to say what I want to say.

On Thursday, 2/5/09, I saw Dr. Minor who said, no, I won't likely have any brain or other seizures (if they are to happen, they happen right away), the lack of a fix with the steroid did not mean that the growth was a tumor (although it could be), I shouldn't go blind or get much worse, but he wasn't sure. Oh yes, and he was happy about my weight, blood pressure, etc because they were in normal range and did not show problems.

He let me know that I was meeting on Friday with Dr. Bruce McCormack at UCSF, a neurosurgeon, to see if he felt comfortable going into the brain and fixing up the double vision and slurring. On Friday, after a fair amount of waiting, I was able to see the good doctor, supposedly one of the best in his field, and he proceeded to run a bunch of pshyical tests on me. He was happy overall, though he agreed that my 6th cranial nerve was the cause of the problem and that I had lost most balance in the right side of my leg (can't use it to tap!). You wouldn't necessarily notice it right away until I started bumping into lots of things, which I often do!

Anyway, he suggested that I not do surgery on this area, known as the aqueduct of Sylvius because there is a large chance not to make it out of the surgery or to make it out with complications (too risky). OK THEN! Instead, he recommended that we wait 3-6 months to see what happened, as symptoms could fluctuate for the better during that time. He seemed to think it was irritation, not new cancer, which would be good news. If we did not want to wait, he did provide us with a Dr. Mike Lawton at UCSF (415-353-7500) who might take on the case.

So, now I wait for my chest and abdomen CT scan on Wednesday, the 11th, which seems like a long way away. As soon as it is finished, Dr. Minor can prescibe me the temodar, which are chemo drugs that I hope start pushing everything back! I am hoping that it is all a hallucination, but I feel like the lung mets are all over, leading to sore neck, back, etc. I can't believe that so much has changed for the negative in such a short time. I am hoping that another week of rest and the start of more treatment will help me get back some to most of what I have lost.

I do want to thank Marge and Lynn for driving me around town on Thursday and Friday, respectively. I wish I could say that I won't be needing it, but I will guess that I will need a whole lot more of those rides in the near futre.

Here's hoping that next week brings good things!