Brain Mets -- 10/13/00

 I think I'd mentioned to people that I'd been concerned about our trip to New England. I thought it would be too difficult for Sybil, especially since she was returning from Vancouver just a few days before. Well, it turned out to be an extremely difficult trip indeed, but we don't regret making it.

The flight out wasn't full, so Sybil was able to lie down. This makes a big difference because the nerve damage from her L2 mets makes sitting for periods of time painful. Unfortunately, I sat by a very sick man and wound up with a bug that plagued me for the entire week. I'm still coughing!

A day or so into our visit with friends in New Hampshire, Sybil grew increasingly listless. She had little appetite and was cold all the time. She was able to attend her friend Karl's family reunion and later was able to make a visit with my friend Brian Sullivan and part of his family. Her energy was low and she ate very little. More worrisome, about three days before our scheduled return, she started having short but extremely painful headaches. Two of these were unbelievably bad.

I can remember two particularly low points for us. At one point Sybil looked at herself naked in the mirror and was shocked by what she saw. "I look like a concentration camp victim! No one is telling me the truth about this!" She had dropped down to even below her chemo weight lows and now weighed less than 100 pounds. As I've said before, her normal, extremely skinny weight is 127. At another point Sybil was vomiting, or rather mostly dry heaving since she had little to vomit, while her head was packed with ice in an attempt to deal with one of these terrible headaches. "God help us," I said after a difficult time of trying to comfort her. The prayer seemed to help and we somehow got through an awful night. Sybil can be wonderfully ironic even in the midst of horrible circumstances. After surviving this, we overheard our friends having a discussion about their cat. "Life goes on," said Sybil. On several occasions we've said to each other that we would very much love to have a nice, boring life from now on. The more boring the better.

So, these headaches had us both worried. On the day we were supposed to return to Chicago, Sybil called her doctor back home. He told her she should have her brain scanned before flying. We knew this would mean missing our flight and I initially though it would be better to get her home. We both know her doctor is rather conservative, but we decided to play it safe and go to the hospital.

Karl drove us to Dartmouth Hospital, which is much smaller than Northwestern but with a good reputation. It's a much easier hospital to be a patient in and Sybil gets more personal attention here than she would have back home. The brain scan shows that she has three tumors. If unchecked, the pressure from them will force her brain through her spinal opening and kill her. They start her on massive doses of steroids to reduce the inflammation. We spend the night, sleeping little. The Dartmouth neurologist says that Sybil would have been able to fly home, even without the steroids, but I'm so happy to see her get some relief from her headaches that we're glad we wound up missing our flight.

Amazingly, Sybil doesn't seem to have suffered neurological damage from the tumors. They give her several tests and she passes all of them. She responds very well to the steroids and her energy picks up. Indeed, one side effect (yes I know there are many, many more bad ones but we're not concerned with that right now) is that she's jacked up like a pep pill. The good news is the steroids stimulate her appetite and she eats very well in the hospital. This is the best I've seen her eat in a long while and we're very, very glad to see that.

The flight home is crowded so Sybil can't lie down. Again, I'm thankful we delayed our trip back because I'm sure she would have been, at the very least, extremely uncomfortable without the steroid treatment. We're not sure what is next for us but most likely Sybil will receive full brain radiation. After awhile we'll try to slowly wean her from the steroids. She's still taking the low dose chemo combined with the cox-2 inhibitor for her liver and lung tumors.

Whoops, news changes fast around here. Sybil just called to say that she spoke with one of her doctors and was told there is a good chance they will want to do brain surgery on one of the tumors before starting the radiation. They need to take a close look at her MRI scans first, so I need to run those over to them.

Sybil was telling people yesterday that her cancer has now gone to all the places it can go. This is because breast cancer almost always spreads to bone, brain, lung or liver. "It's gone to all the places it can go now," she says. "It's not going to my big toe. It's done." I told Sybil that sometimes you have to hit bottom before you can rise to the top. She looks like she's on the way up.

Matt Donath

mdonath@yahoo.com