|TWO DAUNTING WORDS -- INCURABLE AND INOPERABLE
Tuesday, December 24, 2002
Section: LIFESTYLES Page: C1
Seven letter tiles on the rack, a Scrabble game on the table and the rest of the world melts. For a few hours each night, Ember Nelson doesn't think about the Zoloft her daughter needs for the mood swings that go with having a brain tumor the size of a lemon. She doesn't think about the Decadron, the steroid to lessen the tumor's swelling.
And she doesn't think about the rest of the meds and the doctors and getting government assistance for the bills and all the other bits and pieces that go with the job of preparing for her daughter's death. Age. Foes. Claw. Fed. Havoc. Verity. Injury. The leftover words from the night before are still on the game board on this recent morning when Nelson goes to the kitchen to make pancakes for her daughter, Genevieve Grier, 21, almost 22, who just finished the first semester of her junior year at Chowan, a small college in North Carolina.
Nelson first spied a newspaper listing of a Scrabble club meeting five years ago when she needed a break from the struggle to help her daughter live well with cerebral palsy. Nelson arranged for the operations and therapies so that her daughter could talk and move around in a wheelchair despite arms and legs that were partially paralyzed.
And now the tumor. "If it wasn't for Scrabble I would have lost it long ago," Nelson said. "Why God? Why does one little girl have to carry that much weight on her shoulders?"
Just when Grier was making it. In school she chose history as a major and planned on Harvard Law School so she could wage court battles for people with disabilities.
Grier has had to stop counting on that because the tumor isn't supposed to stay idle long enough. The doctors said two to four years and Nelson is afraid to ask for details. Did they mean two to four years after the tumor was discovered in April? Or did they mean time began running out at some earlier point? They probably just don't know, she said.
Now, Grier's goal is short term. She has insisted on finishing college. This past semester, she had chemotherapy at 1 in the afternoon, class at 2:30 and she finished on the dean's and president's lists with a 3.92 grade point average.
One chemo pill every day for five days once a month for the whole semester and still the tumor hasn't shrunk. Nelson stood over the Scrabble table and stirred pancake batter as butter melted for the breakfast her daughter wanted. Pancakes and, for dessert, a piece of chocolate cake from the pan on the stove.
It has been gratifying to see her daughter's appetite return these past two weeks since she's been home from college. Nelson gives herself some credit for this. She lowered some of the doses of the six different kinds of pills on Grier's dresser after her daughter flew home early because she was so sick she couldn't keep a glass of water down.
"She said she's so close to the toilet she had to name it," said Nelson.
That is the kind of joking Nelson has encouraged all along with her daughter. Laughter can be a kind of therapy, but now as she thinks about giving the toilet a name, she cries and the butter browns.
Good thing Nelson is in the upstairs kitchen, a floor away from Genevieve who is clutching her 18-year-old Cabbage Patch Doll named Byron and letting her morning doses for nausea and pain kick in.
"She can't deal with my tears so I try not to cry in front of her," Nelson said.
When her baby girl with stiff legs was a little more than a year old, doctors said she had cerebral palsy, severe brain damage, the promise of an IQ of only 50 and would never walk or talk. She would be "a vegetable." Nelson ignored the predictions. She knew Genevieve was smart. At 3 months, her preemie baby cried, "Ma." At two years, she had an 80-word vocabulary.
When Genevieve started to crawl using her one working fist to drag the rest of her mostly paralyzed body along the floor, Nelson would jingle a cheap drug store baby toy. "Come on Genevieve, come on," she'd say even though it was hard watching a baby do so much work to get across the room.
After she found out what was behind all of Genevieve's headaches, she summarized the rest of her daughter's life in hand-written, capitalized press release and faxed it to the Dateline TV show in New York because this, she said, is a remarkable story.
"SHE HAD EYE SURGERY, EAR SURGERY, HAM STRING AND ACHILLES SURGERY ... MAJOR SPINAL SURGERY. SHE WAS IN A FULL BODY CAST TWICE ... SHE GRADUATED MAINSTREAMED JUNIOR HIGH "MOST OUTSTANDING STUDENT." SHE GRADUATED HIGH SCHOOL "HIGH HONOR GRAD" AND WENT ON TO GO TO CHOWAN COLLEGE ... LAST APRIL, AT THE END OF HER SECOND YEAR SHE WAS DIAGNOSED WITH A BRAIN MASS ... HER DIAGNOSIS IS AN ANAPLASTIC ASTROCYTOMA, GRADE 3 ... INCURABLE AND INOPERABLE."
So much bad luck. And she's been losing lately at the Scrabble she plays for a few hours each night, online or at the kitchen table with her boyfriend who goes by the online Scrabble name Panchax -- a legitimate 7-point word for a tropical fish.
"My luck has been all bad," Nelson said. "You never saw bad luck like mine."
She put the pancakes on a paper plate and poured coffee into a Styrofoam cup. Only disposable dishes for her and Genevieve. Washing dishes would waste too much time.
"She still doesn't have my permission to leave," she said of her daughter. "If God or somebody comes calling, she has to tell them she can't go," she said. "It's just not fair to her and it's not fair to me."
Sometimes it is Genevieve who comforts her. "Hi sweetheart. Wake up honey," Nelson said to her daughter, still curled up in bed with her doll. "Lucky Byron. Can I have one of those?" Grier keeps her eyes closed, opens an arm and mother leans down into it.
Then Grier sits up, eats the cake, then the pancakes. Behind her on the windowsill is a small pillow embroidered with the words, "The Lord is with you wherever you go." On the dresser is the book "Lucky Man," standing on end with the cover Grier glued on so the photo of its author, sitcom-star Michael J. Fox, would stay.
She likes his book about Parkinson's disease because, she said, Fox "doesn't sit there and feel sorry for himself."
She knows that's an easy reaction. These past months have been hard for her mother. "I'm the one with the tumor. She's the one who has to watch. I'm her baby, she's supposed to be able to do something," she said.
Grier tells Nelson that she's "not going anywhere until God's plan with me is finished." The best thing to do, she advises, is take what little time there is and be grateful.
And so after a day of swallowing pills and eating slices of her favorite chocolate cake, watching movies, shopping for books at the mall, it's time for bed.
Then mother and daughter separate. For Nelson, it's Scrabble upstairs with Panchax. And Grier watches the tapes of her favorite soap operas from her mattress on the floor.
This was a hard semester and it is a relief now to have a break from writing papers and sitting in ethics class with the girl who said she didn't think a person with cancer should be given rations on a theoretical-class-discussion lifeboat. Why waste food on someone who was going to die anyway? the girl said and Grier got angry.
"Thank you very much for deciding that for me and don't ever come to me if you need help," Grier told her in class. Still, she hopes her doctor and her school will relent on their grumbling threats that she's too sick to continue and let her go back when classes start Jan. 13.
She doesn't want the same fate as her best friend who had muscular dystrophy. "Two weeks before graduation, he died. One of his goals was to graduate," she said. She is going back to school if she can. And that, she said, is all.