17 December 1998
Dear friends,
I'm tired.
I'm also encouraged but won't really know much for another month.
The treatment has gone well. I continue to really like the staff which helps a lot since I am so far from home. I also feel very connected to the other people with morning appointments. Two of them have left with clear CT scans - no more tumors! It's interesting how close we feel to each other, even though we've hardly spoken. We've spent a couple hours each morning hooked up to these machines and another hour recovering, but more than that we are all praying for our lives and necessarily pretty humble about what that will yield. I find myself thinking often of the courage in the AIDs community. It's a strange edge to walk -- am I living or dying or both? (And how do I avoid that Mack truck in the meantime? I use my seat belt more faithfully.)
I haven't fainted since that first treatment -- I really found that unnerving (so did the nurse who said later he'd have thrown himself between me and the floor if possible when I nose-dived from a low stool flat on my face). We watch my blood pressure carefully. I eat more protein. I always eat breakfast.
Today I had a carbo platin infusion. This is a chemo agent, but the treatment is a one shot deal. My doctor dislikes both chemo and radiation, but cites an NYU study in which glioblastoma patients taking Thalidomide and carbo platin had 50 percent with no growth and 10 percent with total tumor disappearance. (These are extremely good stats for this kind of cancer.) On top of that, I am also getting apheresis, which has its own good success with other types of cancer.
The doctor says I will be exhausted in a week and may need a blood transfusion (so much for my fantasies that I'll get free of medical procedures as soon as I get home). During that week I'll also need to lay low so as not to risk infection -- we'll probably head for Port Sanilac and spend that week in the woods! He also says he's 100 percent sure that I will lose my hair in three weeks. One of the nurses says that it is more 50-50. I try to stay calm lest anyone think that my vanity outweighs my will to live.
Last night I was terrified about the carbo platin (would it hurt, would I spend hours throwing up?) and about resuming the Thalidomide (would I be hopelessly groggy and bloated? would my blood pressure drop during the apheresis and cause me to faint again?). To my surprise, Bill decided to fly down, just for the day, to see me through.
Having him beside me was wonderful. We even dozed side by side in the clinic's reclining seats as the IV dripped the carbo platin into me. It was hard to let him go at the airport in the evening, but I could hear the kids' delight to have him home when they called tonight.
Spending last week with my best friend from pre-school was great. She's quite knowledgeable about glioblastomas and nutrition. She took good care of me and we even got to work through the elements that made our friendship hard in junior high! And we are probably the only other one in the world who shares memories of each other's homes and schools.
However, at the end of that second week, I nearly refused to go home. We were over-scheduled and I was afraid I would die simply of exhaustion. But the whole thing was wonderful. I felt like I was given the wind I needed. I even found it possible/good to see a lot of people. (Sometimes people's compassion and concern just dissolves me and I can't cope; other times I run kind of cold, because I don't feel like being wholly vulnerable in a crowd.) But this time it was all a gift.
We celebrated the Kellermann Christmas (Bill's mom leaves shortly for five months in Florida.) It was really nice to be with family, to sing Christmas carols, to have a low-key gift exchange (the nieces and nephews are mostly teens now!), to check in with each other and to curl up together in front of Bing Crosby.
Bill and I also went to a memorial service for Mary Durham, 89. She's a wonderful spirit -- genteel and vigorous, able to tell the truth and to be unexpectedly funny. (Mary once confided, "When I need to tell someone something, I often say, 'Do you read The Witness'? If they say yes, then I know I can speak freely!") The service was beautiful - Anglican, hymns that I like and a good sermon by Coleman McGehee.
The next day, we went to church again at Central Methodist where Dan Berrigan preached and Ed Rowe called for healing. Ed did it really nicely by inviting everyone who wanted healing forward including those who had prayed about city shootings and knifings during the intercessions. Then he invited everyone who wanted to pray for us to come forward, so I didn't feel conspicuous. Dan preached about pulling hope through a knot hole in these hard days, then he said maybe even through the eye of a needle.
I loved being at church. It felt like a place that holds the center together.
These days I am entirely aware of how I am dependent on God and on those of you still pulling hope through knotholes -- especially today with news of the bombing of Iraq. Your love and faith hold me.
I get to go home soon! (The girls sound good on the phone.)
Much love,
