It’s been quite a week. Sorry for the late update but we’ve been gathering and processing information and being careful that we understand what’s going on.
Here’s what’s come out. I have ten brain tumors, all of which can be treated with gamma knife. There was some negotiating with the insurance company, but as long as the cancer is stable in the rest of my body (and it is for now), they’ll approve gamma knife in lieu of whole brain radiation. This is a good thing.
So, Monday I go in for gamma knife surgery again. I know I’ve said I had gamma knife before, but there are different brands/styles. I had one last August that’s called SRS, and it can treat spots 6mm and larger. The gamma knife I will be having on Monday can treat spots 3mm and larger. 3mm is the smallest they can see on an MRI scan. So, I will begin my day early Monday at the gamma knife facility at Northwest Hospital. Because of the number of spots they’re treating, I could very well be screwed into a head frame and on the machine for seven hours — and that’s after being screwed into the frame first, getting a very detailed MRI and then sitting around for three or four hours while they plan their approach.
If the planning and execution gets too complicated, they will stop halfway and continue the treatment on Wednesday. Trust me when I say this sounds like a spa treatment next to a year of chemo. I don’t need visitors. Hank will drop me off and pick me up. I will request sedation as needed and I should be just fine. I’ll have a roommate and a DVD player, and might even be able to use my computer if they have wifi and I can move my head into a spot where I can see to type. I think you can see from the picture of the gamma knife helmet why they ask you if you’re claustrophobic and why intend to request sedation.
[picapp align=”right” wrap=”true” link=”term=gamma+knife&iid=9015059″ src=”http://view4.picapp.com/pictures.photo/image/9015059/white-female-patient-gamma/white-female-patient-gamma.jpg?size=500&imageId=9015059″ width=”380″ height=”255″ /]Recovery from the gamma knife is “Oh, you can go to work the next day.” Remarkable, but true. I think I’ll take a day off to nap, though. I’m not that dedicated.
There are good things and bad things to consider. The good thing is that the cancer remains small and slow-growing — in each individual spot. The two spots I had treated originally responded exceptionally well to radiation, which is also very good. Unfortunately, the sheer number of spots is truly frightening. How many people do you know who have survived a total of twelve brain tumors for any length of time, with more likely on the way? What we faced this week was the hard information from one very experienced doctor who said that with people in my situation the cancer often comes back in numerous new spots in the brain in just a few months, at which time gamma knife might be repeated, but eventually something very bad happens — a stroke from a tumor in the wrong spot, a coma, etc., all of which end in the end, don’t they? This badness can happen whether or not you have whole brain radiation or gamma knife in whatever order, it’s just a matter of the wrong spot in the wrong place at the wrong time, and I have absolutely no control over that.
On the other hand, we also talked with my regular oncologist and the naturopath and the doctor who does the gamma knife surgery AND to the nurses who see a lot of repeat customers (as one said, “people keep coming back and getting treated over the years.”). They all emphasized that I’m not a statistic nor can I assume I’ll be the usual case with the usual expiration date. They have all seen people who can survive for years with one gamma knife surgery after another — not usually with this many spots, though. I think we have established that I don’t need to invest in old-age insurance of any kind. A little reality mixed in with a little hope makes for wise decision making.
As much as I object to chemo, I have also started (as of yesterday) on the oral chemo regime that the oncologist recommended. The naturopath and the brain surgeon also encouraged me to do that. The goal is to keep the cancer stable in the rest of my body so the gamma knife continues to be a viable option for my insurance company. The reason they require that proof of stability is that the insurance companies have had many cases in which people will be treated with gamma knife to the brain only to die of liver cancer three months later, so in those cases whole brain radiation really does make sense (and I agree with them there to a degree — if you’re that close to end-stage liver cancer, then losing some of your mental ability might not be such a bad thing).
Chemo generally doesn’t work on the brain, but one of the of the pill form chemos (called Xeloda) has been showing some promise in crossing the blood-brain barrier. Mind you, this “some promise” comes from a small study of about 40 patients at Memorial Sloan Kettering in 2006 and a couple of observations (as in “Wow, maybe this works”) from an Israeli hospital the same year. This is not a well-studied area, obviously. What’s happening is that more people are surviving their original cancers longer, and they’re finding that the cancer then seeks a sanctuary site that can’t be reached by chemo. The sanctuary site is the brain.
As it turns out, there’s an expert in breast cancer that has metastasized to the brain; she’s located at UC San Francisco. I hope to be able to get down there to see her some time during the week of August 16. She is right now reviewing my medical records, so please pray that she is interested in my case and that she can get me in that week. I don’t know if she’ll have any new information, but I’d like to get on her radar if nothing else.