Tuesday, April 15, 2008
More of the story...
I remember the day we were told, the drive home was so long. The sky was cloudy, it looked like rain not like spring. I sat in the backseat with Stevie, held her hand and kissed her, told her not to worry that it was going to be fine we just needed to get the tumor out and she would be all better.
I made myself believe it.
I had to call my family and tell them and I did. We had to see doctors and make appointments, I got online and took a crash course in neurology and cancer. I cried until I threw up. I sat with Stevie in silence on a lime green sofa out here in the sun room, looking at nothing, saying nothing, just being with her.
Two surgeons, one aggressive and not as available, one very calming, kind and ready to get to work. I let Stevie choose but I was glad when she chose Dr. Calm. The surgery was scheduled and she did well. He couldn't get the whole tumor but he got what he could. He was afraid of doing permanent damage to her brain stem.
I can't write all the details yet it hurts too much to remember that time in that hospital, seeing her with a swollen face and all those tubes.
The plan was to follow up with radiation. We did. It was terrifying and the decadron was horrible causing her to swell up to twice her size and make her an emotional wreck.
We were told the tumor was dead.
Life went on, just in a new and different way.
In 2003 right before her sweet sixteen we found that the tumor reanimated and needed to be taken out again. We went to see Dr. Aggressive. He got it all out, all of it. It should have been a slam dunk but the first doctor was not as seasoned and not as sure. She should have been home free.
This surgery was hard on her body. The price for removing the tumor was a loss of balance, an uneven gate, pain that would not go away that she rarely complained about. She had to learn to eat, read, walk and talk all over again. It seemed worth it, to have her forever, for her to never have to worry again.
There was so much fall-out from the tumor but she just kept moving forward, dealing with it all, finding new ways to make broken things work.
She graduated to 1 year MRI's, it felt like an incredible milestone. It felt like an old story we would tell, half wanting to forget but bringing up anyway to remind ourselves how blessed we were and how precious she was.
On the day of her 1 year MRI, just a couple days before Thanksgiving of 2006 she told me she did not want to go, that she knew something was very wrong. This is not the first time she made predictions that were 100% about her body and her treatment. I can't write them all now, I think it would kill me.
The MRI showed a new tumor, larger and in her cerebellum. Surgery was the day after Thanksgiving. She was terrified. I stayed up all night with her, holding her, assuring her and praying.
They removed it all but it started to grow back before the surgeon had time to sew her back up. The pathology was a mystery. They still don't know what the hell it was. They do know that it was caused by the radiation. The radiation she did not need to have had I chosen the right surgeon. She is only one of three people in recorded medical history who this has happened to. A benign tumor turning in to a highly aggressive tumor like this, for these reasons.
We did radiation again, more of the enemy to fight the enemy, it is all we had. Then there was chemotherapy. It was all very horrible. It was everything anyone who hears the word cancer fears. She was tortured. She spent the rest of her life in a bed, hospital, or wheelchair. She never ate food again, drank coffee or read a book.
In April just five months after surgery she died. I still can't believe it.
We went to the hospital because I was so afraid, I knew she was dying and I could not do it alone.
I can't write anymore.