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.

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.

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.

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.

Round Three

I think I know why they call them "rounds" of chemO.  It's pretty similar to boxing.  You go in for the 1st Round and get pummeled; you get hit and knocked down.  You stand up and creep into the corner to smell some salt and get stuff put up your nose to help you feel better.  You catch your breath.  Then just as you are feeling ok; just as you clear your head enough to stand up without wanting to sit back down, you go in for Round 2.

Round 3 stinks.  I was down for the count for a couple of days but here I am back up.  Today is Luka's party; she and Scott are downstairs making frosting for ladybug cupcakes.  

I keep going.  Take my millions of vitamins, my turmeric, my maitake mushrooms, my citrus pectin.  I stretch and walk.  Round 3 almost brought me to tears, but here's the thing.  I feel better.   What do you do when you feel sick and crappy and like saying screw it - I don' t feel like drinking another damn cup of green liquid vegetables?  You first decide to go to Costa Rica.  And stay at the most awesome place there (www.tierradesuenos.com).  And what do you do when your doctor puts you on new medicine and you figure out it will be too dangerous to be in a different county in case you need to go to a doctor and you don't know the language?  You quickly decide to go to Hawaii instead.

I am leaving for Hawaii on Thursday.  Sun, yoga, watsu massage, saunas, ocean water.

The other night I couldn't sleep so I tried some visualization and was getting pretty into it.  I was picturing myself swimming through a crystal blue ocean.  I could breath under water.  I felt invincible, calm, and peaceful.  But my window was cracked open and a car must have stopped at the light on our street corner.  Its bass was booming and the beat sounded like the music from Jaws.  Swear to Lordy I ain't lyin.  Can't I even visualize without Jaws lurking around? Sheesh.  I'm going to Hawaii.

Hi My Name is Cancer

This weekend, while at some friends' house for dinner, I forgot I had cancer.  We ate our dinner and chatted and listened to the kids play and told stories about certain things that are kind of hilarious.  After dinner, my dear friend handed me a pen and we started making a list for what we would need to plan for Luka's 6th birthday party, which is coming up in about a week and a half.  This same friend reminds me when it is time to sign up for swimming lessons and summer camps.  Without her, Luka might possibly be a bored child who doesn't know how to put her face in the water and blow bubbles.

Anyway, we were writing things down and getting into the details.  We talked about making smoothies, having live music for musical chairs, etc.  When we started talking about playing pin-the-handmade-popsicle-stick-flowers-on-the-flower-pot instead of pin-the-tail-on-the-donkey and how each kid could put up their own popsicle stick flower and how it would be so cool because then they could all be contributing to the big flower pot instead of ridiculing each other for putting the damn tail near the eye or something; I forgot I had cancer.  In that instant, it was no where in my mind.  When I got up from the table, it was as though I just remembered. Oh yeah, there's cancer in my body.  Shit.

Meeting new people these days is kind of difficult.  When someone wants to shake hands and say where are you from? and what do you do?  I want to say, Hi, my name is Cancer.  My middle name is Blog.  My last name is Green-Vegetables, with a hyphen.  Cancer is all consuming.  I try hard to let it not be.

I've been practicing my Mindful Meditation.  Put your feet on the ground, feel your feet on the ground, put my finger on the keyboard, feel the keyboard.  I chew about 65 times before I swallow my food (macrobiotics says chew 200 times - that takes a long time - I tried it.  plus, there is no food left to chew after about 75).  I thank the food for its nourishment while I eat.  These things bring me into the moment and calm the brain down.  They make it easier to put the cancer somewhere else.  And in instances like when I was thinking so hard about the popsicle stick flowers, I wonder if the cancer really does begin to go away because it is so far removed from the mind.  I think it does. 

On Monday, I start a new treatment.  It will involve a chemO agent in combination with Bevacizumab (try to say it.  my oncologist says it super fast.  like a lot of times).  Bevacizumab is designed to stop angiogenesis, which is new blood vessels developing and carrying nutrients to the tumor:  it basically cuts off the blood supply to the tumors.  There is some controversy involving insurance and Money because the drug is very eXpensive.  So some insurance providers do not want to cover it.  Dr. B says he will show my insurance provider the new promising research articles about Bevacizumab and if they don't wish to pay for it, he will ask them where their office is and go over there.

I remain completely determined to destroy this cancer.  While I can put it away for periods of time, it is usually there lurking in the background.  It's nice to let go of it sometimes, but because it is there, like some kind of creepy soft elevator music, it keeps me in check and reminds me to focus on my project.  My big Science Project called Beating the Shit Out of Cancer.  With a concentration in Teaching My Kid Everything She Needs to Know in Life Right Now.

Send good vibes on Monday and say Bevacizumab 3 times fast.

Scantastic

So after two rounds of chemO and a 10 day stint of RadiAtion, I've gone and gotten scanned.  The  results are basically what we expected.  The scan is a bit hard to read because of all of the inflammation from the radiAtion, but it looks as though there are some areas of regression.  This is Super, but also another little "nodule" decided to place itself in my lower left lung and this is not so Super.  It is about the size of the tip of my thumb.

This might sound like discouraging news, but in fact I feel a bit more encouraged.  I knew going into this that the tried and true chemO regimens were iffy for my type of cancer and it's stage.  Now that we have tried the Tried and True, we can move on to either a newer chemO drug or a newer type of treatment - like immunotherapy.  Or a combination of the two.  Because the chemO we tried isn't working exactly the way we want it too, we can now search for the treatment that will.  Basically - to qualify for the new stuff, you have to try the old stuff first.

There  is a small part of me that is screaming and yelling and saying can't someone just rip this stuff out of me and chuck it in the garbage?  Can't I just throw up and have it come out?  But I have to keep going.  I have to drink my vegetables and eat my vitamins.  I have to watch Scott and Thandi finish the sauna.  I have to help Luka learn to jump rope.

So here I go.

Bye Bye RadiAtion

Yesterday was my last day of RadiAtion treatment.  I shuffled everyday for ten days at 9:45 am into the Cancer Center; changed into a gown, locked my stuff up with a key in a rectangular cubby, flipped through an Oprah magazine and then got zapped.  The staff on the Garden Level of the Cancer Center - the people who check you in, the people who line you up on the radiAtion table - are awesome. I will actually miss them and will probably stop down to say hello to them. Compared to my experience at the nameless Hospital, The Cancer Center has been a five star hotel.  (Not that I've ever even stayed at a five star hotel, but. . .)

The Providence Cancer Center has nice lighting.  There are no buzzing fluorescent lights, only soft lighting and table lamps in the waiting rooms.  

There is a library where you can check out books or cds (from music to guided meditation to kids' books to cookbooks to books specific to your cancer), get free information, use the Internet, and look through donated hats.  

Support Services offers free counseling and support groups.  Integrative Medicine offers Naturopathic doctors, acupuncture and massage.  

But most importantly, the people who work here are nice.  And seemingly trained well.  If they are short staffed, (and they are sometimes, probably most of the time- who isn't?) they do not take it out on you.

That is my plug for Providence Cancer Center in Portland.  Also, I said I would be more uplifting in this entry so there you go.

Back to ending RadiAtion.  Yey!  You might think that zap zap and zap - it's all gone, but that's not how it works.  More like zap and the tumor blows up and the cells inflame as they die, so the pain worsens at first and the actual benefits of the radiAtion can take a couple months to see and feel.  So my back hurts a little worse than before.  But one thing I have noticed lately is that my chest doesn't feel like it is going to crack open when I sneeze anymore.  It doesn't even hurt when I sneeze now.  And I've been afraid to sneeze for about two months, so it's nice to not get panicky and try-really-hard-not-to-sneeze-when-I-have-to anymore.

Tomorrow at noon I have a CT scan to evaluate how well the chemOtherapy is working.  Although I do hope it is working and that the scan confirms this, I will not be discouraged if there is a different outcome. My dad has helped me by researching a Plan B (involving immunotherapy) that we will use if Plan A does not work.  Today I talked with Dr. B about plan B and after photocopying an article my dad had researched - specific to metastasized cervical cancer and immunotherapy - he let me know that Providence Cancer Center does a lot of work with immunotherapy and that he would help me find a clinical trial should the need arise. 

And peeps, I also have a Plan C - which may involve the Kushi Institute for Macrobiotics or the Hippocrates Institute or some other alternative healing crazy miracle working I can't believe that worked kind of place.

But for now, let's hope the chemO is doing it's job.  And let's say thanks to the radiAtion for doing such good work blasting away my "large mass."  Bye bye radiAtion.  It's been super swell.

Post Op 2008

Today is the anniversary of my hysterectomy. Scott said maybe I should prank call my surgeon. (who is ranked among the top gyn/oncologists in the nation and works at the hospital that I don't go to anymore - which I won't name because I could get in trouble.)

Instead of making any prank calls, I thought I'd post an excerpt from my journal that I wrote last year. It is not a pretty journal entry, but it is my story. And I feel like I should tell it. If you don't like stories of post op surgery, this might not be for you.

****

Surgery February 2008

My naturopath gave me some advice about what to tell the anesthesiologist prior to going to surgery. So I told the beady headed man with a European accent and a tight multicolored surgical cap that I wanted to wake up with no pain and I didn't want to throw up.

He made it seem (in the whole 3.5 minutes I spent talking to him) as though this was easy enough to accomplish. Scott and I were watching tv behind the preop curtain. I was surprisingly calm and had no idea what was in store. It was 5 o'clock in the morning. My Dad poked his head through the curtain and said he was going to go move the car and he would be back. They only allowed one person in the little curtain room and Scott was with me.

I guess the next happenings are a blur because I don't remember having the mask on me or anything else until I woke up. In pain.

When I woke up my mouth was dry. I felt nauseous or like throwing up. The pain was bad in my abdomen, so much that I could not relax my back and kept arching and clenching my muscles. I also kept holding my breath. A bird looking nurse with a curly light brown bob and a pointy little nose was attending to me in some way or maybe helping my get ready to move to the recovery room. She had a weathered look and soft wrinkles. She possibly should have quit this job years ago when she first started tiring of it.

This nurse looked annoyed and I thought it was just her, but she let me know very soon that she was annoyed primarily with me. " You know, you keep holding your breath when you're sleeping and every time you do that an aLarm goes off and I have to come turn it off."

"I can't seem to unclench my back muscles. There's a lot of pain. Should there be a lot of pain?"

"Maybe you should try moving up a little bit. You look like you're laying in an uncomfortable position. Here - try putting this pillow behind you." And she started shoving a pillow behind my back. Which hurt. Things were happening fast and there were some other nurses checking tubes and things and moving around - a sea of blue scrubs. "Try to keep breathing," the bird nurse said. And then she was gone.

Ouch this pain was like someone was raking my abdomen into little piles of leaves.

Somehow I was wheeled to the recovery room which reminded me of a medical tent in MASH. There were about eight or ten beds lined up in bright crappy lighting, four or five on each side of the square room. I was put in the SE corner, furthest from the door. There were curtains separating us and I could hear other people's machines beeping and pumping. Some people were moaning. The man on my left was speaking an Asian language. He seemed pretty out of it and I had never heard someone out of it speaking in a different language before.

I had a pain pump which didn't seem to be working. I kept pressing it like a million times in a row. Finally I pressed the call button to say What the hell? and What time is it? and When can I go to a different room? The nurse who came did not speak much English. She was Asian and also had a bob and was moving mouse-like within the curtain. She only answered me with one word answers and sometimes did not answer me at all. I told her I think this pain pump thing is not working. She did not answer, but she turned the machine toward her and started to press some buttons and the thing made some beeping noises and then she left. She came back with a book and started pressing more buttons and I was thinking - Great she's got the flippin manual out?? I finally said in a voice that I wanted to try not to sound too racially offensive, is there someone else who could help me? Can you get someone else? I'd like Someone Else to come in here please. She did not acknowledge these requests and then she left. For a minute I thought about asking the guy to the left of me to maybe interpret because maybe this nurse did not understand me, but I didn't do that.

The thing still did not seem to work so I pressed the call button again and no one came for a while. Finally a concerned looking woman poked her head though the curtain. She was not a nurse, but a doctor who was checking on her patient.

I asked her what time it was and she said it was 2 in the morning. I told her I thought I was supposed to be getting a different room and she said yes, everyone was waiting because they didn't have any available beds. I asked how long I would have to be in here and she said hopefully I could move within the hour.

She asked me if I was uncomfortable and I told her the pain pump doesn't work. She explained to me how to use the thing correctly and then she reset some buttons and said It should work now.

In the middle of all of this, I was having trouble breathing with the pain and was having panic attacks. I was making a horrible noise through my throat trying to catch my breath. This doctor kept telling me to breathe and stayed with me until I was able to calm down. The pain pump started working. I was there till 8am and every time I started talking about the night, I had another panic attack so everyone told me to try to stop talking about it.

****

I have posted this excerpt not to say "poor me and my shitty surgery." Rather, I feel that if we are going to try to improve the quality of health care in this country, we have to share information about how things are. This post op experience was just the beginning of the less than mediocre care I received at this Hospital. I am now receiving outstanding care at a different Care Center and I promise to write a more uplifting post next time, my friends.

Gifts, Church, and Asteroids - Not Necessarily in That Order

In January I attended my nephew, Danny's, baptism.  Though I had not been to church in a long time, I was raised Catholic. Finding myself again sitting in a wooden pew, standing and sitting at intervals and crossing myself in the name of the Father, the Son and the Holy Spirit felt mildly comforting.  But when my sister-in-law handed me my freshly baptized nephew - just handed the baby, bundled in a white christening gown that had been handed down for generations, right over the pew and into my hands - I felt something pretty powerful.  My hands were instantly warm and kind of tingly.  I started to cry. Then I looked at my little brother and laughed at myself.  But he didn't laugh.

This Sunday, I went to church with Luka, my friends Jamin and Ryan, and their 8 month old daughter Angelina.  Luka had asked me to go to church and when I told Jamin - she said "I'll go too."  So we decided to check out some different churches in Portland in an effort to expand our sense of spirituality.  I would not say we are shopping for a church to belong to.  Rather, we are looking to expose ourselves to spirituality as a whole.  I can't say I believe in any one church or religion or god.  Maybe I believe in them all.  Or maybe I don't think anyone's got it quite right yet.  But I figure now's as good a time as any to do some exploring.

We started with a beautiful old Episcopalian church.  It is built of dark stone with bright red doors.  The service is quite similar to a Catholic service and we stood up, sat down, kneeled (or at least realized kind of late that everyone else was kneeling and we weren't.)  We watched some babies and grown children get baptized.  We sang Hallelujah and stumbled through some other songs.  We read along in the book of scriptures and when Jamin said "preserved" instead of "persevered," we guffawed and snickered for probably 3 minutes.  When it was time to recite the Our Father - we did so perfectly.  Jamin even new the end part - something about "thine is the kingdom and glory," but I can never remember the rest.  Luka sang and played with Angelina.  We ate "the body of Christ," - I let Luka have the wafer even though she hasn't had her First Communion - oops, hope that doesn't offend-.  We put some money in the bucket and shook hands with our neighbors and said "peace be with you."  It was familiar.  And peaceful.  Next week we might try a Buddhist temple.

My mom always told me that my ability to write was a gift.  Presumably from God.  I did explore this gift and did a lot of writing in my twenties and then kind of put down my pencil and picked up a camera.  Taking pictures took less time and thought.  Less discipline and concentration.  Recently - as you can see - I have taken to writing again.  I made a pact with whichever God or Buddha or Saint or Big Tall Redwood Tree was listening.  -I promise to use my gift.  Please let me live.-

My husband's gift is music.  I like to listen to him play - he can play pretty much whatever instrument you put in front of him.  I have been encouraging him now more than ever to use his gift.  It's hard when he has this role as "caretaker." As the put-up-with-everything-your-wife-does-and-says-because-she-has-cancer guy.  Because I know I can still be annoying and bitchy even though I have cancer, and maybe even more annoying and more bitchy.  I want him to go play drums for hours.  To write thousands of new songs.  To not let my cancer stop him from living his life.  From using his gift.

My husband has another gift. It's called collecting things.  Some people may not think of this as a gift.  Even I have thought of it "something other than a gift" (to put it mildly) as I've tried to maneuver my way through piles of  "collected things" while just trying to throw in a flippin load of laundry.  But Scott is the only person I know who out of the blue can pull out an Atari System from 1982 in mint condition with 10-12 games including Donkey Kong, Pitfall, Pacman, and yes, people, Asteroids.  

Sometimes  I really believe that playing Asteroids is my cure.  Visualizing in my head the radiation and chemo as the little triangle thing blasting at cancer cells is one thing.  Actually playing the game and blasting the big colored blobs into pieces is another piece of healing altogether.  Yesterday when I played I got a score of 7140.  When Scott plays, he gets like 16,000.  He is really into blasting those things away.

Church, check.  Using gifts, check.  Blasting cancer away by playing Asteroids, check.  Go away now, cancer.  Go on along now.

Lunch Time

One of my favorite frequent mom and daughter times with Luka is Lunch Time.  Since she was able to sit in a high chair, I have looked strangely forward to the time of day when I can cut things into little squares.  In high chair times, it was cheese, apples, avocados, toast, and bananas.  Now it's mainly peanut butter and jelly, avocados and pears.  Whatever it is, cutting things into little squares gives me some kind of joy, possibly associated with the control over the knife and the familiarity of a daily (or now mostly weekly since Luka eats lunch at kindergarten) routine.  Arranging the little squares on a butterfly plate with applesauce and a green Ikea spoon is fun.

At Lunch Time, Luka sits at the kitchen table (formerly in her highchair) and sings, talks, draws pictures or tests the range of her octave scale by making periodic highpitched squeaking noises.  Our conversations have grown from "ba ba ba" - "yeah, Luka, ba ba ba," to "ball" - "yeah, Luka, ball," to "I'm not going to take a nap, Mama," - "Well, actually, I think that you are going to take a nap, Luka," to issues involving school, friendships, and things like responsibility (ie. why it is important to hang up your coat and not throw it on the floor and kick it under the couch when you walk in the door).

Today, we talked about teeth and baths.  Luka sat at the kitchen table singing a song she must have learned at school about the "circle of life."  She sat with her head cocked to the left side, her feet tucked behind her, singing and drawing a new backdrop for her fish bowl.  I set down her lunch and was washing some dishes at the sink when she asked me, "Mom, what does it feel like to get all big teeth?"  We talked about it for awhile and then she said, "Are they always crooked?"  We talked about that and I told her that my teeth had been crooked so I had braces.  She asked me who puts the braces on and I told her a special dentist called an orthodontist.  She said, "Why don't they call it a Brace-odontist?"

Then I washed some more dishes and she said, "Mom, what would happen if you took a bath for two weeks?"

I started my second round of chemOtherapy about a week ago and was getting through that alright.  Then they hit me with some radiAtion.  They put 4 little permanent tattoos of ink dots on the skin of my chest and use the dots to line up the external beam radiAtion therapy.  For about 10 minutes a day for 10 days, I lie on this little white bed with my arms up over my head, while a machine in the shape of a circle rotates around me and shoots radiAtion at the "large mass" in my left lung from 3 different angles.   I am happy this is being done.  I visualize the zapping of the tumor, as it is easy to picture the radiation beams in the shape of  the little bullet things in Atari's Asteroids.  Who says playing tons of video games as a child can't be useful as an adult?  Clear visualization is my friend.  I guess RadiAtion is too.

Here is the thing I don't like about my friend RadiAtion:  it makes me feel so tired that sometimes when I'm standing in line at the store or picking up Luka from school, I feel like I could very easily slump down to the linoleum floor and be in a REM sleep mode before anyone even noticed I wasn't standing anymore.

This means that sometimes I have to take naps in the afternoons.  And miss my Lunch Time with Luka.

I know it will only be for a short while that I will have to endure the side effects of this treatment, and that because I Truly Believe my treatment plan will work - in the long run missing a few lunches won't be a big deal.  I know also that I am lucky because I have a flexible work schedule and plenty of help from my community and family.  But it still pisses me off when I have to miss Lunch Time with my girl Luka.  I just want to cut stuff into squares and talk about teeth.

Evita Peron

In early February of 2008, I had a tea party.  About 12 of my closest female friends gathered at my house to drink rooibus, green and black tea, eat little salads, hummous, and olives, and lend me some support.   I had been diagnosed with stage 1B cervical cancer in January.  February 28th was my scheduled hysterectomy with lymph node dissection. I was feeling nervous.  And sad.

Each guest brought a plant.  After the tea party, I gathered them all up (not the guests; the plants) - the witch hazel, the white sage, the lemongrass, the lavender, the creeping thyme and all the rest- and planted them in a little patch of dirt in my backyard that I named the Evita Garden.  All spring, I watched it bloom and tended to it.  In the summer, I harvested some herbs and sat by the garden,  my eye often drawn to the little patch of vibrant purple flowers closest to the front, on the left.

This winter, we had some snow.  The garden leaned back and pulled closer to the ground, its green triumph hidden by the cold.  Most of the plants went brown for the winter and I will wait patiently until spring for them to come back.

Oddly enough, the little patch of purple flowers never really missed a beat.  The patch seemed to shrink and close up under the snow, and then miraculously reappeared some days later, as though unscathed. I walked back there yesterday to be sure, and there they were in full purple vibrance.

 

The Evita Garden:

Evita Peron is known to have died of cervical cancer in July of 1952.  As research indicates, she was never told of her condition - and believed she had "vague female problems."  The cervical cancer was kept secret due to her husband's political campaign and the Argentine government.  

Cervical cancer research has come a long way since the 50's.  Some people don't like talking about it because of it's association with the virus HPV.  But when close to 70% of the nation possibly is carrying the virus, with symptoms of its existence sometimes never surfacing, it seems logical to talk openly about it and to take serious measures to stop it.  There is an HPV vaccine for adolescents out now called Gardisal.  Also, it has been determined that women with mild dysplasia (something I was told I had on 3 occasions during my very Regular annuals - "it should go away on it's own," they said) have depleted amounts of certain Vitamin B and folic acid in the cells of their cervix.  Taking extra supplements could be a preventative measure worth demanding research about.

Off my cervical cancer soapbox now.

Here's a link to an article about Evita Peron:

//partners.nytimes.com/library/national/science/health/060600hth-doctors.html

  

Good Blood

Doc says blood counts look "great." Able to start another round of chemO tomorrow or Thursday.  This is good news.

Doctor Dad

Went to see Dr. B this morning; had some blood drawn so the lab techs can look in astonishment at all the millions of white blood cells I have magically created this week. Computers are down, so I'll have the results in a few hours and if all is well, can restart chemO tomorrow.

Dr. B pronounces chemOtherapy like this: chem uh therapy. I like this.

I had to have a word with Dr. B today about doctors and being able to get in touch with them. I had a rather important question and tried to reach him directly. You have to go through this system where you call and talk to the advice nurse line and leave a message and then the advice nurse calls you back. For most things, like nausea and papercuts, this system seems ok. But when you have a pressing issue, like Your Pupils Being Asymmetical so One is Huge and the other is Tiny, you want to talk to your doctor. So after I called the advice nurse and insisted on a brain MRI and after I called back and said "I would like to speak directly to my Dr. so please have my Dr. call me directly," and after the nurse practitioner called to say the MRI was scheduled, I expected to hear from my doctor.

I did not hear from my doctor. But I am a very lucky cancer patient because I have a Dad who is not only an awesome dad, but who also happens to be a doctor. From the beginning of my diagnosis, through my surgery (which I may someday write about here - you know you want to hear all about it) through the diagnosis of my cancer recurring to my lung and everything in between, my Dad has been there to explain everything in detail. To interpret medical jargon. To reassure me. To make sure I always understand that there is hope.

We have never been a dramatic family when it comes to illness and ailments. We are more of a "if it hurts when you do that, then don't do that" family. (And when saying we have never been a dramatic family, I do mean in terms of illness and ailment - give my family a small piece of gossip and we'll be sure to turn it into a full blown drama and also probably a more than slightly exaggerated tall tale). Anyway, when I noticed my pupils being different sizes, I did not want to worry anyone so I didn't say anything and I just did some internet research (not smart) instead of calling my Dad. I suddenly had the intense feeling that the tumor had invaded my brain. I insisted on a Brain MRI because I wanted someone to tell me that I was wrong and I wanted to proof.

When I began to check myself and the level of drama I was creating for myself, I called my Dad. He immediately had some research on hand about nerves in the upper lobe of the lung and how one goes up and around the eye. Apparently, if there is pressure or inflammation around this nerve, like say from a tumor in the lung, the pupil near the eye of that nerve can have a hard time constricting. Horner's Syndrome or something. Although I was not totally freaking out and I did have some level of calmness about myself, my Dad once again reassured me and made me feel better. Isn't that what a doctor is supposed to do? Make you feel better?

But I still had the MRI. And when I saw my doctor today and he told me the results were negative for any brain involvement, I said, "Yeah, my DAD told me that would most likely be the case." Then I kind of reemed Dr. B out for not calling me back like I asked the advice-nurse-message-talk-into-a-machine-about-important-stuff-you-should-be-talking-to-your-doctor-about-line to have him do.

In Dr. B's defense, he did not receive the call back message because it was mistakenly put in his "append" folder, which is a folder that I guess is a not-that-important folder. Anyway, my mom was there with me at the appointment and she said, "You know, she's not really a complainer. She's not going to call you with a hangnail," or something like that. Dr. B said he knew that and he gave me his cell phone number, direct voice box, and email address. Anyone want this info? Just kidding. Scott says he's going to call up and say, "Hey Dr B., it's me Scott - I made up this really great song about cancer, do you want to hear it?" or "Hey, Dr B., it's me Scott again, how do you spell cancer?" But he won't. Do that I mean.

So I have some funny lookin pupils sometimes, but that should even itself out when the tumor starts to shrink a little bit. In the meantime, I feel thankful to have my Dad researching the latest treatments and what to do if the chemo and radiation aren't quite cutting it. To have him to talk to when I need reasurrance. I feel thankful that my mom is here to keep my house clean and to play bingo with my daughter and that my husband and my friend Thandi are putting together a sauna in the backyard. Oh, and also that I have Dr. B.'s cell phone number.

Operation Alternative Healing

Holy week of integrative medicine.  Blood counts down?  Eat garlic. . .do acupuncture. . .take these chinese herbs. . .visualize. . .massage. . .take vitamin C. . . don't take vitamin C. . .get lots of rest. . .bounce on your heels. . .jump rope. . .drink electrolyte enhanced water. . .antioxidants. . .no antioxidants. . .salvia. . .astragulus. . .coriolus polysaccharides. . .holy shit.

On Monday I went to see Dr. S, a "body talk" therapist.  Though I can't really think about that term without getting Olivia Newton John's song "let's get physical" stuck in my head for hours, the therapy is interesting and, even more interesting; Dr. S is a walking talking survivor of debilitating MS.  Years ago, she was blind in one eye and could not ungnarl her hands.  She had all kinds of crazy neurological issues on any given day.  The doctors gave her the "you are incurable" prognosis.  To which she said (to herself, but maybe to the actual doctors - I'm not sure), "Just because you fuckers can't cure me doesn't mean I am not cureable.  I'll cure myself."  And she did.

Body Talk therapy is basically about directing the body and mind to direct "healing attention" to neglected areas.  The practitioner is talking your mind through a process of reprogramming systems in your body.  For instance, by tapping my hand and feeling my hand pulse, Dr. S claimed my pancreas was dehydrated.  She also said my cells were dehydrated because my cell membranes weren't allowing hydration to enter the cells.  She does some "body talk,"  which is very technical and medical sounding, and then taps on the brain to get it to "fix the faulty communication" and taps on the heart to "store the fix."  Tapping on the body to get it to focus on healing is apparently an age old practice and and is used in yoga and acupuncture practices as well.  

Body Talk was developed in the 1990's by Dr. John Veltheim - an acupuncturist and Reiki master.  Sound like mumbo jumbo?  I'm not sure about it either.  But what do I have to lose?  All I know is Dr. Sid said since my cells and dehydrated systems would be rehydrating, I might notice that I have to pee more.  The night after the first therapy, I had to get up to pee 3 times.  So either something is working in a healing way like they say it's supposed to, or I will just be peeing  a lot now.

Tuesday was yoga and then a steam/sauna with detox tea and some sweetious time with my friend Andrea.  Wednesday was a meeting with my Naturopath, Dr. T, and acupuncture at the Immune Enhancement Project (IEP).  Thursday was a meeting with my other Naturopath, Dr. C and Acupuncture at Providence Cancer Center.  This morning was Acupuncture and Shiatsu massage at IEP.  

Crazy week of "alternative healing." It is leaving me feeling rather exhausted.  I will welcome the day when chemOtherapy and radiAtion are considered the "alternative," but for now I will commit to every single piece of healing possibility that blows toward me in the breeze.  So, I go in for more blood work on Tuesday and hopefully will have my white counts and platelets flying like tiny little kites so I can hop back on the chemo train.

The sun has been showing itself lately.  When I get home from work today, I will go in the backyard and pick up some apples.  I've been wanting to do this all winter, as they have been littering the way back of our yard since dropping off the trees in the fall.  They are scattered like little balloons, ready to pop if you step on them and it's time for me to clean them all up.  I'll bend and gather, scoop and toss.  And then I'll feel much better.

Blood Counts and AC/DC

Today I went in for some more chemOtherapy.  The nurse who came in to draw my blood had frizzy hair and shaky hands.  She had light blue and pink flowered scrubs that looked like guestroom bathroom wallpaper.  She couldn't find my vein and it felt really pokey for a while so she tried my other arm.  I generally like nurses (my uncle, aunt, and brother are all nurses and I am constantly impressed with the way nurses really run the show), and I liked this nurse, but I did not care for the shaky hands.  (Shaky hands don't bother me either except when the person in possession of the shaky hands is sticking a needle in my arm.  My lab partner, who was also one of my best friends in 7th grade, had shaky hands sometimes and we thought that was a real hoot when she was trying to pour some weird liquid into the beaker, right Parnell?). Anyway the nurse took some blood and then Scott and I went to the inclusion room.

I was happy that my seat next to the window was open and we sat down.  My nurse came and gave me my hydration.  For a minute, she couldn't get the machine to work and I thought briefly to myself, can't I get that nurse over there in the sassy blonde bob and fashionable purple and black scrubs?  But then when my nurse got the machine working, I felt bad for being slightly superficial.

 

Scott and I sat for a while, with him drawing in his sketch book and me playing around on the computer.  I had just put on some headphones to listen to a mix Scott made called Julieemo; or chemo beats I like to call it.  Here comes my nurse to tell me "Your white blood counts are low.  The doc wants to see you.  No chemo today."  And off we go to see Dr. B.

Seems the chemo is making my white blood count and my platelets too low, so we have to hold off on chemo for another week.  I'm supposed to have a full 8 hour day of chemo every three weeks.  Also, I was supposed to start radiAtion this thursday and now we have to postpone that too.  So son of a crap.  Stupid white blood cells.  Stupid platelets.  No, I take that back.  I love my white blood cells.  I love my platelets.  Stupid cancer.

So Dr. B said to not worry too much, because it takes a while to see how one's body metabolizes the chemo drugs and most likely, the Taxol is still in my system and therefore, still shrinking the tumor.  I still felt a little frustrated because I know that some people have to stop treatment, or get less of the prescribed doses because of these types of side effects.

When I got home, I looked in my book called, Natural Strategies for Cancer Patients, by Russell L. Blaylock, MD.  (If I could figure out how to underline that title I would, by the way).  In it I found some suggestions for what supplements to take when blood counts are low.  They include curcumin, folate, sublingual methylcobalamin (what the? - oh it's vit b12) , vitamin b6, vitamin C (buffered as magnesium abscorbate), vitamin E succinate, and niacinamide.  If you are curious about the doses, I would suggest picking up this very helpful book, because I ain't no doctor and can't prescribe this kind of stuff.  But I did go pick it all up (with one of my gift cards to the local grocery and vitamin shop - thank you people; vitamins are spensive).  I will have more blood drawn next week to see if I can continue treatment at that time so stay tuned  to see how the vitaminiminimins work.

So I did all of that then came home and Scott made me a burrito with beans and brown rice and swiss chard.  Scott is my husband, my man, and I mention him every so often.  Let me just say that he is a constant support and if were a metal crafter, I would craft him a shiny medal.  When we gave our vows and talked about in sickness and in health, neither of us had even thought about chemo or blood counts or hair loss or surgery to remove your uterus or nurses with wallpaper scrubs.  Now it is something we think about every day.  He doesn't complain.  He makes me food, brings me movies, makes me mixes, takes Luka skiing, rubs my back where it has been hurting, and works xtra hours at the shop.  When it gets to be too much, he goes for a long walk or plays his drums.  Today he played his drums and now he's going for a long walk.

Scott probably won't like me writing about him, so I'll stop, but I did want to mention his AC/DC shirt.  For some reason, he has worn this shirt on some monumental occasions.  Like when Luka was born.  And when he proposed to me.  It's not as though he woke up and thought about it and said "today I'm going to wear this shirt because today is special." It's more like us going back through pictures and saying "oh look this is the day Luka was born - look you have on your AC/DC shirt," and "oh look this picture was taken right after we got engaged, "look - there's that shirt again."  So when we looked at some photos after I shaved off my hair, it was funny to notice Scott's shirt.  

Blood counts schmud counts.  I'm going to go finish my burrito and listen to Back in Black.

Watch Me Breathe

My mom's good friend of many years made me a beautiful quilt.  She sent it with a note encouraging my determination and suggesting I use the quilt to curl up under with Luka and a good story, to hide under on bad days, and to keep nearby when I wish to be warm.  

I received this quilt about five days ago.  Yesterday, I received news from my mom, that her good friend - the quiltmaker - a wonderful woman I have known for many years - lost her son.  Eddie was 36 (my age) and died suddenly and unexpectedly in his sleep from an apparent blood clot in his heart.  When we were kids, Eddie had leukemia.  He was a longtime cancer survivor, a father, and a newlywed.

Yesterday, after I heard the news of Eddie's death, I went to yoga class.  When I sat down and put my hands to heart in the beginning of practice,  I dedicated my strength, my fight, my determination to Eddie and his family.  Because they will need these things to get through this and because this life is not fair.  And you can give me all the talk about things happening for a reason and about God being Good and about forgiving disease and illness and loving disease and illness for showing us the "way," but it still is not fair. 

Cancer is not fair.  It is not fair that Eddie had  to endure leukemia when he was a child and then had his adulthood stopped short because of an unexpected blood clot.  Now his own child will grow up without a father.  It is not fair that my little cousin Sammy has to go have chemo instead of going to school.  It's not fair that I am afraid to eat a cookie because I think I will die.

At yoga, every time a took a breath, I pictured this cancer popping and disappearing and I breathed as deeply as I could; so deep that it hurt my chest.  I focused on my breath and the oxygen moving into my cells.  Cancer does not like oxygen.  Cancer is not my friend so I will give cancer lots and lots of oxygen.

The pose of the month is the handstand.  It is a good pose for strengthening shoulder muscles. Since my left shoulder has been aching for about a month- with the tumor in my lung pushing through the ribs in my back- I work extra hard at my handstand.  I want to build my shoulder muscle to push the tumor back.  I refuse to let it win.  

My favorite pose is the humble warrior.  I held this pose for a long time and kept holding it while everyone else had already moved on to modified cobra and downward dog.

The other night, while I was on my way home from Scott's show at the Langano Lounge, I heard a song on public radio that inspired me to pull over and listen more closely.  The music was acoustic, with some guitars and drums, and the lyrics were sung in a perfectly angelic harmony between a man and a woman.  The words I was drawn to were sung over and over.  "Break me open; watch me breathe." 

The odds are not really with me.  And I am aware of this.  Tucked back into the little attic in my brain, there lies the notion that this is a very large dragon and I am a humble warrior with a rather small shield.  But I am dedicating this fight to everyone who has ever had to endure the battle with the dragon.  To Eddie and his family.  To Sammy.  To Luka and Scott.  To Myself.  

Break me open.  Watch me breathe.