16 April 1999
have had too many ups and downs on this medical opinion thing.
We've been through hell and back, again. We're hoping to have saved most of you the latest loop on the roller coaster.
Toward the end of March, as we struggled to figure out what had caused the seizures that landed me in the hospital, my neurologist, whom we love, calmly explained, "Jeanie, you have scar tissue in your brain. You will always be subject to seizures." She added that I will always be taking anti-seizure medication, too -- at the moment I'm on Dilantin, Phenobarbital, and Thalidomide, which makes it hard to know whether my occasional memory lapses are drug-induced, seizure-related or just middle age. We aren't thrilled, but we felt worse when the March MRI report came back saying: "Findings are suspicious for tumor residual or recurrence bilaterally." (The only previous mention of bilateral trouble -- which is to say, something appearing on the left as well as the right side -- was early last December and seemed to have been cleared up by mid-January.)
Bill moved mountains to get the MRI films overnighted to our doctor in Tennessee who was in the office one last day before leaving for a two week conference. At then end of the day, he told us that the "suspicious" swelling in my brain could be from healing or from new tumor growth and he leaned toward believing it was the latter. At first, I had a rebellious bravado, but it quickly crumbled into a true fear that I was going to disintegrate overtime in front of my husband (who would be stuck with caring for me) and my children, until I finally died. (We see lots of people in the neurologist's waiting room that give real meaning to this.) When I confessed my fear to Bill, he said, "That's the fear I have all the time." But he adds that while we are under the shadow of fear, we try not to be consumed by it. Bill manages to be incredibly present and we laugh often -- even about all this.
The radiologist who issued the negative report was new to my case (we did it here instead of flying to Nashville) and asked for the prior films which we took to him immediately. Since then, his revised report says, "the overall current appearance is unchanged from the prior exam (1/18). Post surgical changes are suspected. More posterior signal to either side of the midline is nonspecific. No overt enhancement is detected within this signal complex. This may represent a post therapeutic effect. Relative stability would suggest no definite neoplasm." So jargon aside, the last two months seem to have been stable. We're grateful. And we're really grateful for continuing friendship and prayers.
I did finish editing the May issue, but had a chance to talk with Julie about changing some of my responsibilities at The Witness. In the meantime, my biggest challenge seems to be learning about seizures. A good friend, Jenny Atlee, who is studying acupuncture visited and showed me a spot in my palm where if pressure is applied will stop a seizure from progressing. We've tried it repeatedly and it works, but there are lots of new questions about where I can go by myself, whether I need an i.d. bracelet to inform strangers about my condition, what the kids need to know in case they are alone with me in the event of seizures. Tough stuff, on top of tough stuff.
The next paragraph I've reconsidered a number of times. I don't want to sound hokey or like a Pollyanna. I do find the faith of women in this God forsaken city a really helpful witness. Through all this, I continue to be learning an enormous amount about myself (starting with my foibles), about what is really important (remarkably little) and about God (who it turns out is more generous and warm than I had imagined). So, at least for me, it has been worth it. Another good friend, Debbie Mast, assures me that I need to be able to imagine that the kids are gaining strength and self-respect through this too because they are helping me so well. (When I told them they would each get a half hour with a counselor next week, they looked shocked. Lydia said, "I thought this was family counseling!" Lucy explained, "We thought we were going to be supportive of you because you needed counseling!!" I like these kids.)
My current challenge (okay, one among many) will be learning to trust that God is looking after Bill and the kids too. Okay, that's it for now. I'll be glad if there is nothing dramatic to report for a long while.