Saturday, April 25, 2009

Lava And Kava

South of Hilo, on the big island of Hawaii, there's a town called Kalapana. In 1990, the volcano called Pele erupted and lava flowed for months, covering the old fishing town and its black sand beaches. As the town is slowly coming back to life, merchants sell weaved baskets and coconut water by the side of the road. There is a Kava bar, where residents like Harold, serve kava and play Hawaiin music some nights. Residents build houses on fields thick with black lava and coconut trees sprout up, dotting the vast black rock with spots of green.
While Kathy and I sat at the bar and drank earthy kava, Harold told us about living through the lava flow. Though no one was killed, he said, some people left the town. Harold chose to stay, leaving for only one night and living the rest of the time on a generator while the lava continued to flow around him. When I asked him why he chose to stay, he said, "I grew up here. This is where I live."
The lava still flows from Pele. During the day steam plumes up swiftly into the sky in a big puff over the ocean and at night, tourists drive up the road toward the steam to view the lava sparkling red down the side of the mountain. The residents of Kalapana don't live in fear of Pele. Rather, they live humbly alongside the unstable mountain, trusting that whatever Pele brings is a matter of fate.

The Avastin and Gemcitabine put me in bed for two days. This combination of chemo was pretty tough and also pretty toxic. And also wasn't working. My scan showed that the area in my lung that was radiated did shrink so yay for that, but the newer tumor at the bottom of my lung is growing despite the killer chemo.
So we've decided to quit chemo as we have tried two different regimends and they aren't quite cutting the butter.
Although this does leave me somewhat dismayed, I don't think it is quite time to gasp and clutch the curtains. We still have a clinical trial to try out, and I will continue with radiation as well.
I continue to write in my journal for Luka. And I have some other tidbits of info I am writing down here and there. But mostly I am trying to just live and enjoy my time, no matter how long it is. 5 months, 15 years - whatever it is. While I continue to fight, I will live humbly alongside this unstable monster in my body. I do hope it doesn't erupt. But I do realize that, ultimately, it is a matter of that wonderous thing called fate.

Monday, April 13, 2009

Mary's Garden

My neighbor Mary plants yellow tulips every year along the perimeter of her yard. She prunes her own bushes in the spring and cuts the spindly sticks into kindling, which she stores in her garage for winter. Last summer, Mary turned 90.
Toward the end of the warmer days, I saw her out in her yard less and less. At short intervals, I caught glimpses of her kneeling on her knee pad, wearing her clear plastic head scarf and her disposable rubber gloves, weeding her peony beds. A few times I gave her some raspberries from our neverending thorny patch; I know she likes raspberries on her cereal in the morning. At the chain link fence, she told me her heart has been giving her some trouble and she can't stay out in the heat for too long. She said her doctor put her on a new medicine that is helping her feel better.
"I don't know what he expects, though," she said. "That I'll live to 100?"
She laughed and coughed a bit into her napkin. Then she looked into my eyes. "I don't want to," she said.

This spring we've had a few nice warm days, where the sun sits plump in the sky. Luka and I were making dandelion crowns one day next to the grape arbor when we saw Mary standing next to her magnolia tree.
"It's good to see Mary out," I said.
"Why, Mama?" said Miss Luka.
"Because. She's old. And sometimes she doesn't feel well enough to come outside."
"Are you old, Mama?" Luka said.
Tears. Dandelion crown. Tears.
"No, Luka, I'm still pretty young."

I need to be here. I refuse to let Luka go through school and breast buds and mean girls and sweaty boys and makeup and deodorant and pimples and SATs and learner's permits and embarrassing fashion trends and impossible decisions without me.
I don't think I want to live to be 100 either. I will settle for 75. Or even 70. But I need to be here.

"Palliative treatment" is a phrase I do not like. As in - your treatment doesn't have to be on a rigid schedule because it is only palliative. And it is a good thing I can disregard this phrase and keep my own curative treatments on a rigid schedule. Tonight I will take my vitamins at 11, before bed. Tomorrow I will go to Kundalini yoga at noon. Take vitamins. Meditation at 7. Wednesday I will go to acupuncture at 10:30. Sauna at 1:30. Vitamins.

Thursday, when I go for Day 8 of Round 4 Chemo, I will ask for hydration even though the nurses say I don't need it. They will say that the nausea meds will be enough and you don't need hydration for this chemo. And I will say, You are Wrong. Because I spent two days throwing up with the nausea meds. So please give me some hydration. And please stop saying Palliative Treatment. Because I'm sure you doctors and nurses are good at your jobs, but in this case, the case involving my life and how long I am going to live it, you are Wrong.

***note to self - I am not in denial. I am merely excruciatingly determined. And I need to be here.

Monday, April 6, 2009

Mahalo Hawaii

Here I am. It took me a little while to collect my thoughts after returning from the big island of Hawaii. But here I am.
How was the trip? It can be difficult to explain the experience of spending a week on a volcanic healing island, in a blissful little cottage set on twenty acres of open meadows and fields and crazy cool trees next to a roaring and crashing ocean. Add yoga teachers, shamans, meditation areas, body healers of all kinds, hot pools, cool pools, a sauna and three healthy organic meals a day. Plus lots of tea. And kava. Oh and coconut water.
I stepped away feeling refreshed and relaxed, yes. But also quite changed. Some sort of metamorphosis happens in a place like this. Whether a person needs healing or not, it seems one inevitably steps away feeling better. And given the tools learned from the many healing teachers at Kalani, I feel like I came away with a greater knowledge of how to keep myself feeling better.

The first night we flew into Hilo, K and I took a cab to a bed & breakfast called Maureen's. Our cab driver, Benjamin, spoke with a thick Japanese accent and called Maureen 3 times the next day to see if we needed a ride to Kalani, even though we told him we had arranged a shuttle. Persistent fellow. Anyway, we got to Maureen's and it was this old mansion with wooden everything and big banisters and a huge open back porch with tea tables overlooking green green green and a koi pond.
We immediately needed to see the ocean. So we walked down the road and found a path that led to the beach. It was a bit of a long path - through winding trees with roots jutting into the ground from a foot up. Then there it was - the big crashing ocean, dark blue against a fading sky. We stared at it for a long time, walking around on the crunchy lava rocks, and then realized it was dark. We also realized we had to find the path back. Which we then realized we couldn't find. It was kind of pitch black.
Though my heart did flutter, we did not panic. Instead, I took a picture of Kathy and we realized my flash was a light. So we found the trail with the camera flash and kept flashing all the way back to the street. Then we kind of laughed at ourselves and went and had sushi.

When I was in about 8th or 9th grade, my sister Angie and I used to lie in our beds in our shared flower wallpapered bedroom (which we later painted white - very mod - and I moved my bed into the closet) before we went to sleep, listening to the Ooga Olympics on WRKR. People would call in and have to yell or scream OOGA in a crazy way and whoever did it the best won something like a dinner at the Ground Round or something. We really liked this. Anyway, after the Ooga Olympics and the Top Ten countdown, I diligently switched the radio station around and around until I found a song that I liked and would not go to bed until I found one. Then I would leave the dial on that station, thinking that it would give me a good chance of waking up to my alarm in the morning with a song that I liked.
Going to Hawaii was a bit like the radio station game I used to play. Searching and searching to find something that works and then setting the dial so that what's working stays with you. (even though that game usually didn't work quite right, sometimes it did. and a couple of time it was even the same song in the morning as it was at night. whoa). I think I'm going to stay on this station for a while. oooooooOOOOOga.