strength

music

friendship

sharing ice cream

beauty

love

I lay mostly in my garden room now. Today, it is extremely hot and I can hear my daughter squelch scream laughing through the french doors and someone washing the dishes
through the door in the other room. For a few minutes, I pretend I have the flu.

My back hurts and I am unable to walk on my own. Apparently the nerve block didn't work. Nor did the cisplatin or bevacizameb or green juice or radiation therapy, or massage or acupuncture or 5 mushroom formula, because it seems my bones hurt, my back and side ribs hurt, and walking looks more like collapsing.

Am I complaining? Hells no. Well maybe a little bit, but the thing is: 1) Besides my usual badass community of support, my entire immediate family is here to rally around me. and 2) I still have my wits about me more ore less. Yes - I could still fight. I could get myself a wheelchair and pretty soon some oxygen tanks and tubes and read and read about how to beat this. But the thing is, it's time for me to make peace. It's time for me to admit to myself that everyday the Pain is getting worse.

I like my garden room. I remember painting it (mosaic green) with my friend Kathy while I was about 6 months pregnant { I had a mask on.) (eco paint, ok?). we were laughing a lot because we are idiot painters, but then for some reason when Bron Y Aur from Physical Graffiti came on, I started to cry silently. It might have been the first time I had ever cried actual tears "of joy".

We moved Luka's room upstairs about 2 years ago, and now the mosaic green room has French Doors, that lead out to a pretty back porch (built by Frank Camp and Aaron Beam and my husband), which leads out to 1/3 acre of pretty gardeny joyousness.

Every few days, my dear friends Kathy and Thandi wash my body with soft cloths and peppermint soap. They did some research and found that babyoil in the wash cloth moistens the skin enough to make it less sensitive to touch. It works. My naturopath, Molly O'Neill, comes to this room to give me acupuncture and I am lucky enough to have two friend massues, willing to enchant the garden room with their magic Pain relieving skills, Danielle Lanier, and Ana Helena DeCastro (who insisted on coming and doing some work on my family and friends who have been busy bees around the house and who's homemade cottonseed oil probably works even better than baby oil so maybe we should try . My Dad brought me a Hot Fudge Sundae from Dairy Queen.

I'm not trying to boast (again) about all of the great friends and family I have. It's just time to let go of the Pain. It's time to teach my daughter the beauty and strength in surrender; it's time to show her the absolute courage it takes to fight with all the power you have and then realize the
Pain is not going to stop until you give it the word.

My beloved bathers, my massues, my acupuncturists (thank you Tom at IEP as well); they cannot stop my furious cancer, but they can help me fight this enveloping Pain.

And when the Pain is gone, I can hear endless belly laughs on the porch and pretty music in the far off distance.

sum sum summertime

Who doesn't love summer time? Well, there must be some people, some lovers of the brightly colored leaf, the frosty cold. But here's me - a summer fan. I like how it smells - all cut grass and breezy; flower-drenched. I like the green trees and sun and all that, too. I have a summer birthday; I like presents and parties. But I think the biggest draw has always been the sense of freedom summer brings. No jacket, no school, Ghost in the Graveyard till 10 at night,
no storm windows. I really like screen doors.

When I was ten, summer meant riding our bikes to Rainbow Park with sack lunches tied to our backs, our tires wobbly on the dirt trail by the chain link fence where that one stinkin dog always barked and tried to get our pedals. We (we being me, my sister Angie and usually one or two of our neighborhood friends) threw down our bikes at the big meadowy hill and chowed sandwiches and Capri Sun. Then I think we played tetherball, but I might be wrong about this.

We returned home sweaty and tired, having raced on the way home, with Cindy Smith trying to win by doing that bobbing thing up the hills. Our kickstands melted into the asphalt of the driveway (the next day my brother would measure the depth of the kickstand hole and compare it to previous days). We stuck our heads in the freezer until our mom yelled at us to get out of the kitchen while she tried to make Beef Stoganoff in the electric skillet.

I went to bed sweaty again, probably, but happy knowing that we could do the very exact thing tomorrow if we wanted to.

Growing older, of course, brings more responsibility and perhaps less freedom, but summer always has has that free edge. Margaritas with dinner outside on a patio, camping in the middle of some woods right next to your car, no jacket, swimming, popsicles in the middle of the day. Screen doors.

Dare I complain from my beautiful little garden room? Dare I open the pretty french doors and scream bloody murder?

I am attached to a pain pump and a catheter which drains my left lung. And I just want to go swimming. A long fast swim like at swim team in 7th grade. A 20 foot deep bottom search at Lannon Quarry where I was a lifeguard and swim instructor with pretty pink lungs and a whistle. A leisurely sidestroke with my Gramma in her inground pool (pick the apple, put it in the basket; pick the apple, put it in the basket). A crazy handholding bobjumping headgoinunder with my daughter, Luka, as we swam around Creston Pool. Mama and Baby Fish.

Pull this stuff out of me so I can go swimming. Enough with the hurrah I'm brave. They better make some seriously good margaritas in whatever afterlife I'm set for.

Tomorrow, I will find some kombucha to drink, have a massage and resched. my appointment witth my Chinese herb practitioner.
But today, folks, I am screaming bloody murder.

Fireworks

Asparagus Therapy is 4 tablespoons of cooked blenderized asparagus 2x per day for three months. When I told my hospice nurse, Beau, about it today he said, Hell I'd try that too.
It turns out that Beau is the second half of BeauJo, as in BeauJo's pizza in Colorado. Jo is his wife. They owned the little pizza joint for years and then sold it to some younger kid. I ate there when I lived in Fort Collins. I asked Beau if he ever made the pizza at home anymore and he said Sometimes. He laughed. It's pretty good pizzza.
The he changed the dressing on my Pic line IV site and helped me drain my PleurX catheter.

I was in the hospital for about 11 days. I contemplated staying there. Burrowing into the manual hospital bed and gluing my hand to the remote control so I could watch the Lifetime channel and new shows about gymnasts the whole day through. It seemed like it could go down this way, with me just melting into the weird white sheets and the bally textured blanket.
But it turned out I missed my stuff. I missed the little herbs I had just planted in old kitchen drawers and I missed my little daughter's feet barrelling out onto the backporch, jumprope dragging along. I missed my husband's look of exasperation.
Deciding that though the immunotherapy didn't seem to be working and though my body was too weak for any more chemO that probably wouldn't work any, that I could still be Hopeful. That I had some writing and teaching left to do and that I couldn't teach my daughter anything with my hand stuck to the remote at the Hospital. And that it was weird and kind of awful being constantly around these people who stick needles in me and ask me constantly How's yer Pain? and give me advice bout moving my bowels, these people who I Don't Know who are possibly getting to see the last glimpses of me. Having decided all these things, I discovered I could still be Hopeful.
I could try Asparagus Therapy and Go Home.

So here I am in the little Garden Room, looking out into my backyard. We had friends down from Seattle this weekend. For several past years, we have spent time watching fireworks on the pier of Jami's folks lake house. Jens and Scott spent good amounts of time at Boom City picking out a plethera of dynamic fireworks to dazzle us with. Upon arriving back, they would find the kids running around with sweatshirts over bathing suits, hairtips still wet from the day, and marshmallow sticks in hands. Us with vodka frescas and blankets ready in big chairs. Then off the show would go on the pier - big booms and sprays with a backdrop of fireworks shows from all over the lake.
This year was different. Jens and Jami and Marley came down here. They did get to see some fireworks at Mt. Tabor, but nothing like the display on the pier from Boom City.
I listened to the fireworks from my Garden Room.
But because of all of the love around here - the visitors and nonstop parade of sheer love (as cheesy as it sounds) - I did not feel left out.
As Luka ran out the door and tossed back a quick Bye Mom quite hurriedly, I did not panic. I turned to my little notebook and thought about all of the things I could still teach her. I washed up and hung a new piece of art to look at in the Garden Room with my two savior girlfriends.
I am making peace. I am making it work. I am hopeful.
I am eating 4 tbs of asparagus 2x per day and visualizing Boom City Fireworks next year on the pier.
I am not giving up.

Consent to Take Part

When I was in my first year of college at Colorado State University, my dorm roommate and I liked to sit in the courtyard by the cafeteria on our bean bags and study. Or actually sit in the sun and talk about gossipy things while holding our books and yellow highlighters.
At the end of that summer, near the closing of September, I lost one of the lenses to my glasses. Instead of telling my parents, I squinted my way through the next two semesters. I had lost or squashed too many pairs of glasses in the past, not to mention IDs and retainers, to admit to loosing something valuable my first semester away from home.
When the winter snow melted and the ground stared up at the sun again, we dragged our beanbags out to the courtyard. This was Spring, early March in Colorado, when the sun blazes down and everyone get out their shorts and frisbees.
I plopped down on my beanbag and put my hand down on the grass. I felt something hard and smooth and looked down to see my hand on top of my missing glasses lens. It had been sitting under the snow in the courtyard all winter.
I said a quick "holy crap" to my roommate and went up to my room and popped my lens into my glasses which I had stashed in a drawer next to my eyeliner. Just when I was beginning to think that I couldn't squint one day longer in my huge chemistry auditorium: Voila. My glasses. Good as new.

I have decided to take part in a clinical trial which starts tomorrow at my cancer center. My doctor and I feel it is a good decision at this point. The two chemo regimens I have tried have not stopped new tumors from developing. We have one more chemo we can save for "if all else fails." In the meantime, this clinical trial seems promising. And intelligent. And I think it might work better than chemo.

The trial involves immunotherapy, rather than chemotherapy. This means that rather than introducing an agent that kills every cell in sight, good and bad; an agent that occurs naturally in the body is used - in this case a monoclonal antibody Anti -Ox40- that can help boost the immune system and may shrink or slow the growth of cancer. The side effects are minimal and it does not leave you depleted of cells you need.

On Friday I had to sit in a chair for 3 hours while they took blood from my left arm and sorted out the platelets, red blood cells and white blood cells, and then put the platelets and red blood cells back into my right arm. The needles were silver and big. I could not move either arm for three hours. Kathy read me a book and held the computer so we could watch What's Eating Gilbert Grape (with johnny depp). We were in the Dialysis room and most people were older and staring at the TV with headphones on. It was quiet in there, with some beeping sounds from the moniters and such. One woman who had been looking at her TV for a long time suddenly shot up out of her chair and started to try to walk with all her tubes and needles attached to her. The nurses managed to settle her down in her chair pretty quickly.

Tomorrow is the day I am picturing that things will start to turn around for me. I am anticipating that the tumors, at least for a while, will stop growing and stop hurting. I am visualizing very clearly being able to run up the big hill at Clinton Park with Luka and roll all the way down.

These things do happen to me. I get to just the end of my rope, where there is no hope left and I'm just about ready to give up and I look down and there's something like my flippin glasses lens. And I can just pop it back in and voila. It's fixed.

Tomorrow I'll be saying that to myself a lot.

Voila. It's fixed.

You say it too.

Butterflies and Thunderstorms

Here I am.
Today I woke up feeling pukey. I had been feeling really well lately and so Scott took advantage of the good feeling time to go off on a little adventure of his own to the coast. For a few days he will be at the beck and call of no one, which is a well deserved need. However, wouldn't you know it; I woke up and knew if I moved a muscle I would throw up. So I didn't. Move a muscle.

This worked for about 15 minutes until Luka said from her yellow horse bed in her room, "Mom, should we get up now?" And I had to think quickly about how I was going to get her lunch made and her hair brushed and her kindergarten body to school without moving a muscle. Does Mary Poppins have a cell phone? Does anyone know the number?

We decided to go to school a little late. Luka carried five of her dolls and three of their blankets over to my bed and we watched some cartoons and I didn't have to move. A muscle. She was excited about going to school a little late until she remembered it was her turn to do the lunch count and then she was very sad and upset. In a crying sort of way. With tears.

I knew we wouldn't make it in time for lunch count, but we got the ordeal settled by many reminders of lunch count tomorrow. And also chocolate milk tomorrow since it is Friday and that is a chocolate milk for Luka day. Lunch count and chocolate milk. Lunch count and chocolate milk. Move slowy out of the bed. Slowly.

I managed to make Luka's breakfast (waffles - in the toaster kind) and half of her lunch before I had to run to the bathroom.

Luka is very respectful of my time spent in the bathroom losing my food. She quiets down and usually finds a little project to do like drawing a picture. This might seem awfully sad and worrisome, but it's really not. She knows it is just part of things as they are now. But I did feel unusually awful today and so quickly laid back down after finishing Luka's lunch and making a few more trips to the bathroom. We decided to call first Michele, then Kathy, then Taylour to see who was home and who could take this kindergartener to school.

Kathy came in a super jiffy. I finished Luka's Around Braid and she was off. And I was off to bed again.

I woke up with a glass of electrolyte water still in my hand. Unspilled. Wierd. I was just in time to make it to Luka's class celebration for the end of their Insect Unit and the release of the butterflies that had started out as caterpillars in round mesh cages in the classroom.

There is something very beautiful about the little faces of kindergarteners. As I watched them watch the butterflies zip up and into the still air, I thought about how much they are little butterflies themselves. Luka has changed so much in one year, her school and home providing a safe cocoon. She is reading and jumproping and also has 2 missing front teeth. What a little butterfly.

Being the self self person I am, I can't help but wish I could be a big butterfly metaphor right now. That my treatment is my cocoon and I am blossom blossoming and the cancer is changing me into a more beautiful person. And maybe this is happening.

But right now I relate much more to the huge thunderstorm outside that is wreaking havoc, blowing patio chairs around, raining huge drops, crashing large pieces of cloud into thunder and setting off blinding blasts of lighting. That is me, the thunderstorm. And my little daughter is the butterfly. Sitting with her wings under a large leaf, waiting for it to be over.

Waiting. Living.

It'll take a couple of weeks for the inflammation from the radiAtion to go down. During this time, I am drinking juice and trying to eat food and waiting for the pain to go away.
I have pain in my lower left rib cage and in the soft tissue area just under the rib. If the pain goes away, I can go ahead with my next plan of treatment. This entails #1 going off the narcotic pain medicine I take daily (because it would interfere negatively with #2), #2 starting an immune boosting drug called Naltrexone which in a low dose has been shown to stop progression of tumors in cervical cancer. There is a woman who writes about it who has metastatic cervical cancer like me and has been living for 4 years using Naltrexone and keeping her body alkaline through diet.

If the pain does not go away: I will try a non narcotic pain med first. If this does not control the pain, and I therefore wouldn't be able to take the Naltrexone; I will enroll in a clinical trial.

In the meantime, I am waiting. And living. Trying to keep my body more alkaline than acidic which is hard because I have been strongly craving pancakes every morning and I don't think they fall into the alkaline list even though the batter has flax seeds in it.

A group of my friends bought me a new dryer. Does this mean I don't have to go back down into our creepy basement and put the clothes on damp dry after drying each load anymore? It is exactly what it means.
Another group of friends planted vegetables in my garden for me. Dug up the earth and brushed away leaves and mushrooms and rotten quince and blackberries and planted lettuce and tomatoes and other vegetables that I could not possibly plant with all this radiAtion in my body.
This is the community I live in.
People like angels keep sending me gift cards to the grocery and the wellness center. They clean my house. They send me encouraging emails. They leave flowers on my doorstep like tricky little pixies.
These are my family and friends.
My daughter made me a card for mother's day that has 18 hearts drawn on it and inside each heart, she wrote I love you.
This is my daughter.
This community, this family and group of friends, this tiny daughter: they give me the strength to wait patiently. . . to keep walking. . . to live.

p.s. The sauna is finished! This is my lovely husband, Scott, and Thandi, Frank and Scott Hampton. This gives me strength to go in my backyard and pretend I am in Hawaii.

RadiAtion Again

This weekend I was in the hospital for a couple of days dealing with some abdominal issues no one in their right mind would want to hear about. You can ask me about it, but I will think you are not in your right mind.
I did get some good news in that we had thought there might be a new tumor in my abdomen, but the CT scan showed no new cancer. So the issues were resolved pretty quickly and basically I watched TV, threw up a whole bunch, and slept for two days.
I'm getting radiAtion again. There are two good things about this: 1) It should blast away some of my new tum0r on the bottom of my left lung. 2) I get to see my friend Carlie the radiAtion tech who is nice and from MinnesOta and who plays good music on the CD player in the radiAtion room.
There are many bad things about radiAtion, but the worst is that because they are radiAting close to my intestine, I get really nauseated and throw up a lot.
In the hospital, I had to be taken down to radiAtion in a wheelchair so someone could be with me if hurled all over the hallway. I waited a while for the transportation guy. When he showed up, he was pleasant and quiet. He helped me with the foot things and then asked my if I minded holding my chart. He did not say anything on the way down to the Garden Level from the 7th floor except for kind of narrating where we were going even though I already knew -because I go there everyday -and saying "here comes a bump."
I went and got radiAted and held the chart again on the way back up. About halfway up the elevetor, I asked the transportation guy if he had any plans for the weekend. He said he was going to buy a tent. A coleman tent. For 50 dollars. At Big 5. His friend had a coleman tent that he got for 40 dollars, but he was getting his coleman tent for 50 dollars. He was going to his friend's house after he bought the tent so they could set up their tents in his friend's living room. He wanted to see if his cot fit in it. Because he just bought a cot. From REI. Because he liked to go camping, but was getting so that he had to sleep in a cot.
Then we were at my room so I said, "Thanks for the ride." I thought I should say something else, so I said, "Have fun with your tent."
Then I thought about how my friend Kathy had just asked me where to get a cot. "Where can someone get a cot these days?" she had said.
And I thought about how I really didn't want to throw up anymore and how it would be fun to go camping.