Booster seats

I was getting behind in my safety knowledge (who, ME?!) and decided to look up booster seat info. Here is what I found:
http://www.carseat.org/Boosters/627_choose_boost.pdf
It says:

Recent research suggests that boosters with a back
are more protective than those without a back, particularly in side impacts.
...but goes on to say:
Backless boosters are lightweight and inexpensive, so they are a reasonable choice for carpooling, play dates, and public
distribution programs. A backless booster should not be used unless the child is able to sit upright throughout the trip and
the child’s head is supported by the vehicle seatback.

I remember the seatbelt rubbing my neck when I was a kid, so I would tuck the shoulder strap behind; I also remember removing the shoulder strap so that I could lay down to sleep in the back seat (with the lap belt around me). I guess Tessa's booster seat "wings" will keep her upright, because now I know better.

Tessa is 47 inches and 44 pounds, so I thought maybe it was time to let her go "backless" but reading this convinces me otherwise. I will waiver to allow for backless on playdates (especially with three in a row, it's hard to fit three booster seats in the back of a car) but we will keep the back on in our car for a long time.

Boosters are required to age 8 or 4'9" - see the Washington State law here:
http://depts.washington.edu/booster/anton_skeen_bill.html

I'm only posting this info because I had to seek it for myself, so thought that someone else might be looking for that info and benefit from it as well.

Edited to add:
Booster seats protect against serious injury 3 ½ times better than seat belts. Booster seats protect against head injury 4 times better than seat belts.
http://depts.washington.edu/booster/faq.html#why

Considering

After my last surgery (well, before) I said, "Never again."

Never say never.

I am seriously considering yet another surgery. My PS always intended to go back, to remove the scar tissues from previous surgical "mistakes" and tighten this and remove that misshapen bit and resculpt here and there and oh, yes, maybe even give me nipples. I said, "No." I simply walked away.

Well, six months after my last surgery, I am very carefully reconsidering.

My right breast is relatively okay. It's the right shape, covered in horrid scars, but okay. It is enough.

My left breast continues to change, and it is not okay. The breast has indents that push like spokes in a wheel, so that one quadrant is deeply rippled from the center outward. It is misshapen. The thin skin is visibly wrong; I can manipulate the implant, feel edges.

I am considering major revisions. I could leave the right alone, maybe do a DIEP on the left. That would replace the radiated tissue with (healthy) belly tissue, and perhaps I could remove the implant on that side, using my own tissue instead. Such a surgery is basically a tummy tuck....but more painful, involving muscle.

How much more of this can I stand? How many more surgeries should I do? When is enough enough?

I have not made any decisions. I'm exploring options, opening doors that I thought I'd closed. This is a decision that only I can make. The YSC girls are strongly encouraging me to fix it, to make it right. Would doing so symbolically help me?

My poor, tender, bruised body. What else will I ask of it?

I don't know.

Living

Someone I know online is dying right now. I don't know how long she has left- I don't think she knows either - but she is in at-home hospice with palliative care.

I am actively aware of her dying, and I carry it with me, a sorrow and a burden. I don't understand it, why it must be this way. I don't understand how such a light, such a force, such a strong woman can die. It just doesn't seem possible.

I think that the message that I am getting from her death -and it's not the first breast cancer death I've watched, but it's impacting me even more than others - is that I must LIVE. I must be true, and honest, and I must seek out the joy and the beauty that is mine for the taking simply because I am alive.

It is a bittersweet, this knowledge that I carry with me, right up with me, not tucked away. Bitter because no, no, no! Sweet because I am taking the small moments and they are taking my breath away.

Tessa's long blond, sunkissed hair in braids, bouncing on her shoulders as she runs. Chocolate gelato. The moon in the blue sky today. Watching Tessa bounce to the music of Recess Monkey downtown. A catchy tune. Picnicking downtown with friends. It is so beautiful, it takes my breath away, brings a small tear to my eye. Literal gasping.

I will LIVE my life, whatever is given to me. I will feel the pain, the sorrow, the worry, the fear - just because I am seeking beauty doesn't mean that these other things are going away. But I will LIVE. I turned off my cellphone, I held Tessa's hand, I lived in the moment.

I will live my life, as long as I have life.

This is the lesson. Now I must practice it.

Picky eater advice?

Tessa's whole life, she has eaten a wide variety of foods without hesitation, and even with glee. She loves sushi (California rolls with real crab & tobiko are her favorite), Thai food, cashew chicken, and any number of other foods that "regular" kids turn their noses up at. Greek, Chinese, Italian, Mexican, all seafood....all have been favorites. She has never liked asparagus or potatoes, so I've never forced those. Or beans - she's never liked the texture of beans. But everything else was a go ahead with a smile.

In the last month, this has changed DRAMATICALLY.

Suddenly, a banana will bring her to tears. The mere mention of fish for dinner sent her under her bed for a full-on tantrum. (I pointed out that I had written a note on the recipe when I made it last, saying 'Tessa loved it and asked for seconds' and she said, "I changed my mind!" even before she tasted it.)

The list of foods that Tessa enjoys can be narrowed down to the following:
1. Cheeseburgers
2. Grilled cheese sandwiches
3. Spaghetti and meatballs

Gone from the list is chicken curry, shrimp, a wide variety of fruits and vegetables....

HELP! What do I do? I have to believe it's just a phase - I mean, she loved all this stuff a month ago - but this is getting really tough. She cried like I'd broken her heart tonight because of what I cooked for dinner, even though I said she could have mostly white rice and pea pods - but she said now she doesn't like rice or pea pods (sugar snap peas). ONLY a cheeseburger would make her happy.

This Mama is not making cheeseburgers every night. No way, no how.

Ideas?

Sleep deprivation and chore time

Last night I was into a good book, so I didn't turn out the light until midnight (my mistake). Ryan was restless, so I didn't fall asleep until around 1:30 (I love him anyway). And then this morning at 5am Tessa woke up crying, saying, "My tummy hurts SO much!" She threw up and the whole bit.

Cancel soccer, cancel our playdate with Anna, cancel having Michele & Dave & kids over for dinner.

Well, Tessa seems to be her regular self again, happy as a clam except mad that I won't let her play with friends. We've taken on a chore day as a result, and I just spent a couple of torturous hours in Tessa's room sorting through her things and getting rid of things. The end result is worth it but OH MY that was no fun at all!

Tessa and I also washed down her "new" desk in preparation for painting. This is another of my roadside treasures, and I'm actually thinking it IS a treasure. It is a solid maple writing desk with little cubby-drawers, well made and heavy. We are painting it white to match everything else in her room, and switching out the hardware, and I think it's going to be darling. She's excited about it, too. It will be nice for first grade homework projects.

Laundry is running, the vacuum has been getting milage, and I'm exhausted. But I have spent so much time doing fun stuff that it is good to get things done around the house, too.

Breast cancer article

Warning: This post is dark, and not for newly diagnosed breast cancer patients. Read on at your own risk. (Or click away - I'll post something lighter another day!)

I routinely look up the latest information on breast cancer, paying particular attention to ASCO findings. (This is how I determined my desire to take Zometa, for example. I'm due for another infusion in July....sigh.)

Anyway, I was playing around with info tonight, and came across this:
You may experience side effects or complications from cancer treatment. For example, radiation therapy may cause temporary swelling of the breast, and aches and pains around the area. http://www.nlm.nih.gov/medlineplus/ency/article/000913.htm

This is so understated as to be laughable. How about this instead?
You may experience side effects or complications from cancer treatment. For example, radiation therapy may cause deep burns which (DELETED because I was being too dark and I don't want to scare someone who stumbles onto my blog.)

I know, I know, it doesn't happen to everyone. But it happened to me.

I will be sweet and nice again....but this just hit me the wrong way!

Sunshine

Blue skies here.

After the slumber party disbursed, we tidied things up a bit, and then went to Lincoln Park with friends. Tessa Razor scootered, threw rocks in the sea, and built some kind of fort out of driftwood with three boys from her school, and the moms (Laurie & Jen & I) hung out and chatted and caught sunshine. We picnicked there - PB&J again for us because I really need to go grocery shopping !- and had a lovely time.

This afternoon, we did another hour or so of chores, and then went to Alki for the evening with Susan, Jackson, and Carter. Tessa did her usual stay-in-the-sea-til-she's-blue routine (lasting less time than usual, and shivering more...hmmm) and we planned a BBQ. I had brought charcoal briquettes and chicken and shrimp, and we planned to grill. Well, the joke was on me - I had the tablecloth and the enamelware plates and the reusable water bottles and all that....but the coals just would not ignite. We messed with it for a long time and gave up. Pepperdock serves great burgers, anyway. ;-) I suppose I can grill - at home on gas - tomorrow.

I'm tired from all the sun, but happy. I managed to fold three baskets of laundry and put them away, but of course the hamper is now filled with a day's worth of clothes, beach towels, tablecloth, and blanket....I should give up on trying to catch up! Oh well. My house is less than perfect, but I am living my life to the fullest, and that is all I can ask for.

PS Ryan did a 65 mile bike ride today and felt toasted as a result. He is going to be creaky tomorrow, I think. He's preparing for a longer ride in July.

Poetry and Slumber Parties

I forgot to write a note about one feature of the SAM day - poetry. While Tessa and I were waiting for the water taxi to depart, she looked down and saw a spider web on the dock, just inches from the water. Tessa dictated the following poem to me:

Spider Living By the Sea

I am a spider
who lives by the sea.
I do not catch bugs,
I catch fish,
Because there are no bugs
by the ocean.
But fish tastes good.
When spiders live by the sea
there are no bugs
for them to eat.
Why I eat the fish
is because it tastes good;
Besides, I hate bugs.
You might think I'm weird
because I am a spider.
I have no friends -
Actually, I have one friend,
and it is a fish.
It is a jellyfish.

This will not make it into Granta but have I mentioned how much I love having a daughter who thinks that sitting on a boat and composing poetry is fun? Tessa wrote down the titles for two more poems to complete, as well: "I am a jellyfish" and "I am a starfish, living on a piling".

This morning I have Jessie & Zoe over, and the girls are in heaven. I made chocolate chip pancakes for breakfast, and they've been finishing up last night's movie (The Saddle Club).

Well worth my time

http://kalman.blogs.nytimes.com/

This artist/writer is so amazing. I feel like I float through her work like it is a river, taking me away. What a beautiful gift.

Hiking with girls

Today I decided that it was time to go hiking. I decided that since Tessa and I were one on one all day yesterday I wouldn't push my luck and do it twice, so I invited Tessa's friend Jessie along.

It was magical.

The girls were in high spirits, so happy to be outdoors. We went to my favorite trailhead...almost. When we turned up the steep road to the trailhead, there was a washout, so we had to turn around and find a new hike. We chose the Denny Creek area, and hiked in to Franklin Falls, which was just gorgeous.

I saw wildflowers (I love the sweet, simple trillium); the girls sang and giggled and ran half the way. Shep was delirious with the joy of being with us, as he's not so fond of art museum days when he's not invited. The air was so fresh, the roar of the river so perfect, and the cedar trees so very large.

We feasted on peanut butter and jelly sandwiches on home made bread, along with some gorp. We leaned against rocks, we felt the spray of the falls, we climbed on the rocks. The girls were happy; they were content. There was no whining for stuff, no complaining about the length of the trail. There was just loving the outdoors, loving being together.

I am a lucky, lucky woman.

Tonight we went to Bobcat Bob's CD release party, and hung out with friends at the coffee shop (C&P, of course).

I am blessed.

Girls Day Downtown

By "girls" I mean Tessa and myself. And it was nothing short of perfect.

Tessa and I walked to the Junction and caught the free Water Taxi Shuttle Bus. We had a few minutes until the water taxi arrived, so we talked to two women who were fishing off the dock for salmon, and I explained to Tessa how fishing works. (Of course, she wants to try fishing right now! We might just have to do it.) We caught the boat in to the city, and headed straight to the market for lunch: piroshkies. We sat on the curb and watched all the hubbub as we ate out of the paper sacks, and it was delicous. (Pike Place in summer is quite a scene!) Then we walked over to SAM, and Tessa and I enjoyed the Wyeth exhibit and wandered around a little, even choosing new china (ha!) for our tea parties from the huge china exhibit. When we were done with that, we wandered back to the market, and stood in the line for the miniature donuts that you get hot off the machine - "the best donuts ever" Tessa says, and I can't disagree. (Except the ones made just like that at Roche Harbor, because they were dipped in chocolate. YUM.) Back to the water taxi, and home again.

Ahhhhhhh.

The whole day, including lunch, donuts, and water taxi, cost $10. We had Metro vouchers free from the Sustainable West Seattle Festival - hurrah! Sure we ate some sugary-fatty food, but we walked a lot....maybe that balances it out.

Tessa and I talked, and played, and just enjoyed each other. I felt so filled to the brim with the satisfaction of being this child's mother - of all the children, I got Tessa, and I couldn't imagine a better fit. Talking about art, wandering the market, riding the ferry, counting jellyfish from the dock....does it get much better?

It might. Tomorrow!

Tomorrow, we think we'll go hiking. Perhaps friends will join us, perhaps not, and it just doesn't matter. We've decided to pack a picnic and our swimsuits, so that we can swim in Talapus Lake. We'll bring Shep, too, and he'll swoon from the pleasure of it....he didn't like being left home today.

I'll do laundry on....Saturday?

Pictures - After the fire

The cross that Don made my parents, that hung in the middle of their home, is charred. The wall beneath it (which is faintly visible in this picture) was protected and didn't burn.

A pile of debris in my parents' bedroom- remember, there was water, fire, and foam....what's left isn't pretty.

And the staircase in the middle of the house, looking up towards the bedroom hall.

Fire

I've heard people say, almost as a game...

If your house was burning down, what three things would you take?

My parents didn't get the opportunity to decide. The house burned while they were gone, and the choice was not theirs.

However, now we are trying to rescue things. It's funny, all of us work so hard to have beautiful, comfortable homes....and in the end, it's mostly just stuff. Stuff that we love, stuff that we miss, but just....stuff. Couches and bookcases are replaceable, and if we're lucky, we even get newer, nicer items to replace what was lost. Kitchens can be remodeled, a new spatula can be bought, and that mixer was really old anyway.

So at the end of the day, most things aren't important, or are easily replaced (when you have insurance money). So what we're rescuing is of value to almost nobody....except us. My parents have all of this in perspective, and they know it's just stuff....but it still aches. Of course it does.

My Grandma Marian (Brown) Goddard kept a cookbook that was really a daybook, but instead of writing in it like a journal, she hand wrote recipes in it, and occassionally taped in a recipe from the newspaper or a magazine. Hundreds of pages of my grandmother's recipes, in her handwriting, bound in a rubber band because the binding long since disintegrated. I nearly cried from joy when I found it - a victory!

My grandparents' Bibles - treasures because of the hands that loved them, the names carefully written in their covers. My mother's baby book. The Polaroid picture of me taken on the day I got my All Round Cord in Girl Guides (sort of like being an Eagle Scout). My brother's kindergarten yearbook.

Really, just scraps of paper....but they mean so much.

We asked Tessa what she would most want to save. "Special Blanket and Special Bear." Oh yes, those are good.

For me? My wedding ring (on my finger, so it's with me anyway). All of Tessa's baby pictures (and beyond). Grandpa Goddard's bookcase. Tessa's baby book.

I hope I never have to face what my parents are facing. They've been through worse, but this is no fun, no fun at all.

I have received several offers from friends to help my parents. I want to say thank you, because the offers mean so much. My parents are very comfortable in their motorhome - king sized bed, leather couches, small but functional kitchen with dishes, fridge, stove, microwave, etc. They even have a small washer/dryer in there. In short, they do not need things - actually, they have nowhere to put things! They are cozy and it is a lovely space. If you want to do something, right now a card with a personal sentiment is probably the right thing. They're on the phone a lot right now with insurance and restorers and the like, and it's all pretty overwhelming and tiring, so a note in the mail is about the right speed. Their mailbox was not attached to their house (it was up the street), so they can still get mail at the regular address.

My Dad thinks that they'll probably be "home" by Easter. There's along road between here and there.

Summertime, and the livin' is easy

When Ella sings that song, I melt.

Today was one of those days. Tessa and I went with friends down to Alki, picnic and beach towels in hand. The moms hung out and chatted, and the children went in and out of the sea, capturing jellyfish, building castles, digging holes, and wading.

When the kids were starting to melt down, we left, no rush, no hurry, just time to be done. We came home and I plunked Tessa into a warm bathtub (hours in the ocean and I swear she was turning blue) to warm up and get the sand out, and now I'm doing chores and little busy work.

May every summer day look like this one!

PS Thank you so much to everyone who has asked about my parents. Given the circumstances, they are doing remarkably well. My mom found out that her childhood hymnal and Bible can be restored, and so can some of their paintings. It turns out that ammonia will take the smell of smoke out of clothes, too. Bit by bit, my parents are piecing their lives back together. I will spend the day with them tomorrow, with a pool break for Tessa (and I!).

PPS I'm spending the day with my parents tomorrow. I'll get pictures of the house if I can.

Good news, bad news

Good news: My parents and their sweet dog Foster are okay.

Bad news: Last night my parents had a 3 alarm fire in their home, and the house and its contents are destroyed.

The fire apparently started in the control switch on the dryer, and spread through the heating ducts of the house. The house is charred inside, but looks relatively normal on the outside, with the exception of broken windows (almost every window is broken). A water main broke in the process, so there is some flooding as well.

My parents are moving into their motorhome, and trying to assess the damage, and waiting for insurance people to show up.

Thank you for holding them in your thoughts. I am trying to be there in whatever way I can, but I feel pretty helpless. I went over there last night as soon as I could get there, of course, but today my parents are just doing things like talking to friends, assessing the damage, and trying to set up a new "home" away from home. They plan to rebuild their house, but they will not be able to move back in for a long time, because the damage is extensive.

Life can change in an instant. But we already knew that, didn't we?

Updates

Here are a series of small updates:

Tessa:
Tessa is growing by the minute, reading more and more, and self-proclaimed Queen of the Monkey Bars. She spends as much time as possible outdoors (in this weather, that is a fair amount), but when indoors, creates elaborate Squawkbird art and stories to go along with the art. (Squawkbirds are her imaginings and I adore the creativity.)

Ryan:
Has signed paperwork accepting a position at PriceWaterhouseCoopers. The commute to Redmond is a killer; I think when Tessa is out of school I need to send the car away with him most days so that we can actually SEE him in the summer.

Garden:
Tonight we had garden lettuce for our salad, and every night we're each eating a nice bowl of fresh strawberries (yum!). Each individual berry tastes like an explosion of a hundred berries in the mouth, and reminds me what seasonal, organic food tastes like. These are no relations of grocery store berries: they are small, some are misshapen, and if picked in the morning, by evening most will be soft and half will be inedible. They are best fresh from the vine, and we either pop them in our mouths immediately, or just bring them in as we're preparing dinner and then have them for dessert. The tomatoes are growing nicely, with two big green brandywines, and countless cherry tomatoes. The rhubarb has doubled, the raspberries have flowers, and so do the blueberries. Nasturciums abound, though no flowers yet, and the sunflowers are all six inches high. I've sampled sugar snap peas. The broccoli looks so-so, and one cabbage looks fantastic while the other are wilty. The chard is bright and beautiful - reminder to self, make chard for dinner tomorrow. The carrots are sporadic - having trouble with them this year. A few spinach plants, one bolted.

In short? The garden is progressing. It could stand a good weeding, but mostly, it's taking care of itself right now. We got a giant load of free mulch from Stonehedge Tree Services that went to good use, too.

Green:
I'm not as focused on green right now, but I am living it. That is to say: I'm not thinking of it the way I used to, because so many things are more habitual now. I've got all my cleaners, of which my favorite is baking soda. I figured out sunblock (Badger & Kiss My Face Paraben Free). I'm using Burt's Bees Grapefruit shampoo and conditioner. Olive oil soap, in the bar to save packaging. Our rags are old and stained from use, and I think that is a good thing, because it means that they're getting wear and I'm not using paper towels. Cloth napkins all the time. Enamelware (camping plates) for outdoor BBQs, or just carry our regular stuff. Library use all the time. I think I'm driving more than I ought to, so I should be focusing on that, I think. Grass fed beef only, the usual organics for everything, as much time at the Farmer's Market as possible to stock our fridge. Still making my own bread, and even discovered an artisan recipe that I love that isn't too difficult.

In short? Being green is taking up less of my bandwidth, as living green is just a part of what I do, so I don't have to think of it so much.

Frugal:
Climbing out of debt slooowwwwly but with progress. We have a plan, and we're sticking with it mostly. We have made giant strides from where we were a year ago,a nd have canceled some debt, and I am so proud of that. We will knock this thing out! Occassional purchases are necessary, of course, and I'm trying to choose wisely. I needed comfortable summer sandals and bought a "good" brand instead of cheapo ones, with the result that they do not hurt my feet and should last a long time. I'm trying to be wise, to use my dollars to show my values, and to save as many dollars as possible at the same time.

Cancer:
I hate cancer. I'm NED as far as I know, but I can't get my MRI approved. I"m overdue for my bone density scan, and I need to book my Zometa. Right now, getting on tamoxifen is all I can handle. Crazy, because I did fifty zillion appointments per week when I was in the thick of it, but my energy for it is lower now.

Book:
Progress. Always slower than I wish, but I've got momentum.

Neighborhood:
I sponsored our first block watch meeting last night, and 20+ people came, not including kids, to hear our local Crime Prevention Specialist give a safety talk. I love our neighborhood.

School:
Lets out on the 19th. I'm really, truly looking forward to it. I want to play with Tessa instead of pushing her to HURRY UP YOU'RE GOING TO BE LATE! which is how our mornings have been going.

Wards:
Arrive on the 16th. Can't WAIT for them to be our houseguests!

Fatigue:
Yes. Still. It tires me thinking about it. I am sleeping better, so I'm hopeful that sleep will catch up eventually.

Pain:
Getting better. Hallelujah. Still hurts when my feet hit the floor, but better than before.

Okay, that's what I have energy for now. 'Night all!

Other peoples' roller coasters

I have been closely following the blog of a friend of a friend. Today she got good news - she's not stage IV. I cheered out loud when I read the words, filled with genuine joy for this stranger (whom I hope to meet).

Then, this afternoon, I got another blog update. Someone on the YSC site that I have "known" since diagnosis made the difficult decision to cease treatment and move to hospice/palliative care. She is a woman of incredible spunk, and has often offered me wise words on the journey. Soon, she will be gone. (Days? Weeks? Months? I do not know how this will go. Would praying for months be selfish, when she is in so much pain?)

I ride the roller coaster with them. It does not feel "other," it feels personal.

Today has been a hard day. I have tried to bury myself in housework, but it is not working. My mind keeps working it over, again and again, and this last news makes me so sad, and agitated, and lost. These are not dear friends, they are more acquaintances, and I am smart enough to know the difference. Still, my marrow feels it. I feel it deeply.

Hazy

I feel hazy today.

Is it the tamoxifen, or am I just hazy?

Sigh.

It was a good day. Got some work done on the book (editing work I'd already done), sat in the sun at Alki, took Tessa to the zoo with Kathleen & Elena.

I'm so tired, though. I'm heading to bed.

Day 1

One thing that I never understood about cancer treatment is that I'd be making new decisions so frequently. Earlier this year it was my first Zometa infusion; then it was taking a break from AIs, and today, it was my first tamoxifen.

I'd be afraid of uterine bleeding and cancers because they are side effects of tamoxifen, but I don't have a uterus. I'm not exactly thrilled to be missing my uterus, but it is good not to worry about yet another kind of cancer.

Fatigue, weight gain, worsening hot flashes (oh God no!) and sometimes blod clots or deep vein thrombosis are possible side effects. The fatigue is terrifying - not quite as much as blood clots, but terrifying none-the-less. I'm just recovering from 3+ years of AI induced fatigue, and I can't bear the idea that it could get back to that terrible place.

Deep breath.

I really had to steel myself to take the little round white pill. I didn't want to do it. But more than I didn't want to bring into my body whatever negative side effects might accompany this little tablet, I don't want to die. And I don't want to recur, either. So, I will take my pill daily like a good little girl and hope for the best.

No sound?!

I stayed up late to see Tessa on TV. I DID see her - she looked adorable in her orange dress. However, for some reason several TV channels tonight have no sound at our house - huh? One of those, of course, was channel 5. I couldn't hear! It doesn't appear to be on the website, either. (sigh)

Comcast Cable, what is UP?! I hardly ever watch TV but when my daughter is on TV it doesn't have sound?!

Tessa's 15 seconds of Fame

Today we played on Alki Beach after school with friends. (It is two blocks from school to the beach - talk about convenient.) Well, a newscaster showed up to do a story about the heatwave, and spent a bunch of time filming Tessa and her friends. We're told that we can see her at either 10pm or 11pm on King 5 www.king5.com in the heatwave story.

The kid is walking on air. She's pretty sure this is movie star status, and she's SO excited.

Me too!

After my intensive cancer treatment year, I was so filled with energy to live my life well, and I was really riding high. I did a half marathon, the 3-Day, Race for the Cure, lost 40 pounds, joined a church, and the rest.

Some of that has stuck, some hasn't, but the thing I miss is the riding high. It's a much bigger struggle these days to feel the sheer joy of being alive, and I miss that. Of course I'm still grateful, and I DO feel it, but it's not the euphroia anymore.

Here's a NYT article that discusses that. I am not alone, and there is comfort in that.
http://happydays.blogs.nytimes.com/2009/06/02/reprieve/

The rush

Why am I so rushed?

Trying to focus....

Cancerversary

Happy cancerversary to me.

Four years since diagnosis.

Back with my family

The only thing about girls' weekends is that they come to an end so quickly - in the blink of an eye. Fortunately, I love my family and so being home isn't exactly torture....but being away from Susan & Carolyn? No good. No good at all.

We had high tea. We stayed in our PJs and sat on the beds drinking coffee until 1:23pm. (1:23?! Oh my gosh we have to get ready to go to the spa!) We had massages. We went out for dinner. We shopped. We went dancing to Bollywood style music at a club called Fez (and I am so glad Carolyn danced with me, and so grateful that Susan said, "no, no, it's okay, we don't have to go" as she sat on the edges, observing, allowing us to have a little extra fun).

We caught up on each other.

And all too soon, we're home. Good to be home, but still....

Carolyn & Susan

Today, this morning, Carolyn arrives. I have known Carolyn since 1986, when I moved to Seattle, and I have loved her since the minute I met her. Since she lives two states away, I rarely get to see her, but somehow, when we do meet, the time just slips away and it feels like we've never been apart. Somehow, even though our lives look different on the outsides, when we are together, we are simply one.

Today, I will cry tears of joy when I pick her up at the airport, because that is how it works, but we will laugh and laugh when we're together.

Carolyn is coming in a day early for our girls' weekend so that she can spend time with my family - Tessa is excited to see Auntie Carolyn, and is also excited for the prospect of getting pedicures together.

And then tomorrow, dear Susan joins the fun, and will pick up Carolyn & I for the road trip to Portland. Susan and I met in college - was it 1991? I always forget! - and we were roommates for four years after that, and we worked together at Microsoft, and we have shared so much together. I watched her children's births, and she watched Tessa's birth, and she is a part of me and I am a part of her.

Well, this year, all three of us turn 40, and so this weekend is a celebration of that, and of each other. We're having high tea, going to a spa, staying at a nice hotel, maybe going to the art museum.....but the moment I look forward to most is simply hanging out in our PJs in our hotel room. Slumber party for the 40 year old set - I can't wait!

Anniversary time

This is the time of my cancer-versaries.

May 25: found lump
May 26: doctor confirmed lump
May 27: mammograms, ultrasound, and "I'm sorry, but it looks like cancer"
May 31: biopsies
June 1: official diagnosis
June 13: left mastectomy
There are other dates, too - first chemo, date of the allergic reaction to Taxol when I nearly died, last chemo, first radiation, last radiation, but those are spread through the year. This is the time of year when all of the dates are close together: wham, wham, wham.

Every time I remember one of these dates it gives me a little jolt. I remember it all quite clearly - how could I not?

It shakes me up to think about it; to think what I have lost. Still, I've come a long way, and I'm not in "that place" any more. So what do I do with it all? I have no idea. Right now, I'm reflecting, but I don't have any conclusions to draw. I find it all so very confusing, so mixed up with so many things both good and bad.

I am here. I am alive. Of these things I am certain, and I am very grateful.

But the rest is confusing.

Mary Oliver is funny!

Tonight I went with girlfriends to see Mary Oliver, the poet, speak at Benaroya Hall. It was lovely, if a little too short, and I'm so glad I went.

But what surprised me most was her humor! This woman, who writes of sorrow and death and compassion and nature is just simply quite funny, and it was in her poems all along but I'd been reading them too seriously, I think. She paused for great effect and everyone in the audience was laughing, and I was delighted.

I can't wait to read her work with a new sense of humor.

Four years

Four years ago today I found a lump. Life hasn't been the same since.

Maybe it's a good thing I couldn't get my MRI this month.

I want to reflect on this moment, but the mere idea of it exhausts me. I no longer know what to say...

Except that I am glad to be alive, and I do not take it for granted.

Pictures from Bellingham

We came home last night after a lovely time, and today we're enjoying being home.

Chincoteague ponies, fresh air, a street fair, a farmer's market - lovely!

Outta here!

This weekend we were supposed to go to Anacortes with my parents in their motorhome. Well, last night my dad came down with a stomach bug, and today my mom doesn't feel too good, either.

Uh oh. Love you, Mom & Dad, but I don't want to be in a room with a stomach bug!

We're disappointed because it's not often that we get together like that, and my brother and his family were going to be camping close by, with lots of cousin time....but what can we do?

While Tessa was still sleeping this morning, Ryan and I decided that we were dying to get out of town and that we needed to do SOMETHING. On a whim, we picked Bellingham. We found a cheap hotel that will take us AND Shep (we weren't even going to attempt dog care at this late date), and I've done quick internet research to find the farmer's market (Saturday), museum (all in one place: art, history, and children's!), ponies (we might get to visit a Chincoteague pony farm), festival (Ski to Sea on Sunday), local pool (with a big waterslide, no less), parks (I know we want to hike in Larrabee). I also hope to swing by WWU to show Tessa where Mama went to graduate school.

We're winging it - all we have are the hotel reservations and a whole lot of fun ideas. It's only a couple hours away but we are ready to shake things up and have some fun.

Happy three day weekend, everyone!

Blue

The pill I was supposed to take and the one I did take were both blue.

What a lame excuse that is!!! I won't do it twice, I tell you that. This whole day was shot, and I had much to do.

In other news...
My insurance company won't approve my MRI and I had to cancel my appointment. This is disappointing and frustrating, to say the least. I can't have a mammogram because I have lymphaedema AND fragile tissue from radiation (paper thin - I literally think my breast would burst in a mammogram) and I have implants that need to be checked for leaks and I am high risk for recurrence and they say I need one before the MRI ... how dare they! Dr. Rinn is up to bat and wrote them a letter but it's not doing anything yet.

I hate getting scanned. Cancer is odd in that it makes me beg to do horrible things. I begged to keep going with radiation, begged to get my ovaries removed, begged to find a way to stay on the drugs (AIs), begged for Zometa infusions. I find it rather ironic that I'm begging for an MRI because I hate them. They are claustrophobic and noisy and frightening and they take every inch of my willpower not to run away screaming. Worse than that, the MRI looks for cancer, and it might find it.

Today I ran into an aquaintance. She recurred, she's in chemo again. It could be me. I need the MRI to give me another reprieve, to tell me that I'm safe for a while.

Ugh. It's hard to exit Cancerland with so many reminders left and right.

Quick note

I made a huge mistake this morning. Instead of my thyroid medicine, I accidentally took a sleeping pill.

Oh. My. God.

I was at Tessa's school when it kicked in. I had to call to get a ride home.

I'm so glad that I realized what I had done, and didn't drive under the influence. I came home and laid in the hammock, sleeping on and off, until my friend Sarah drove me back to Alki to get my car (and Tessa!) at the end of the day.

Yikes.

Headed in the right direction

I really am feeling so much better. I'm not "there" yet - whereever that place might be - but I am on the path. Last night I was tired, but then again, it was a really busy day.

Today I'm chaperoning a field trip at SAM with Tessa's class. That would wear out any sane person! Still, I'm looking forward to it.

Turning a corner?

Yesterday, at Caleb's party, I felt energetic.

Last night I slept well.

This morning I awoke, and still felt good.

I got Tessa to school, came home and did some mail, and then went for a five mile walk - my favorite loop through Lincoln Park. I saw the eagles' nest, I collected shells and beach glass, I breathed in the warm soil scent of the woods and the cool salt scent of the sea. I felt filled with gratitude for it all.

While I was on the urban part of my walk I listened to my iPod. (I did learn last time; now I unplug when I enter the park.) This time I heard a podcast from Speaking of Faith, and it included a poem by Wendell Berry that I'd never heard before. I loved it so much that I came home to look it up, and now I'm sharing it with you.

The Peace of Wild Things

When despair for the world grows in me
and I wake in the night at the least sound
in fear of what my life and my children's lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting with their light. For a time
I rest in the grace of the world, and am free.
— Wendell Berry

"Day-blind stars" - oh that is beautiful....I close my eyes and I can see them through the sunlight.

Now it's time to run around and do chores and pull out the book materials....but this is a great start to the week.

Edited at 2:52 to add: I haven't accomplished this much in weeks! I scrubbed the bathroom (including a miserable 15 minutes on my knees scrubbing the ring off the tub with Bon Ami and a brush), vacuumed, stripped the beds, and much more. I'm tired now, but in the usual way - I was running around like a crazy person. Tomorrow I'll run at the art museum for Tessa's field trip, and the rest of the week I can do Hunts Point stuff. Fingers crossed that my energy sticks around....

The garden, mid-May

Photos to show the "before" picture as it stands currently...

Adventure!

Today we decided to break with routine. We packed a picnic, and headed north, to Whidbey Island via La Conner and Deception Pass. We went to a Native American festival at Coupeville, we had frybread, we went to a couple of beautiful parks, we had our picnic.

We agreed that it felt like we were on vacation, and we've decided we need more days like this. Why don't we do this more often? It was great, memorable, and lovely. We'll be repeating again soon - Port Townsend? Vashon Island? Bainbridge? We don't need to go far, but we were a world away from our rourtines, and it was bliss.

We even got some passers-by to take pictures, and got some decent family photos. Check them out!

Trailblazing

I exchanged email with my oncologist. I told her about my side effects when going off Aromasin, including increased fatigue and skin break-outs. I asked if I was getting an estrogen surge that was causing this, and when it would get better. Her response? Mostly, people don't have side effects when quitting this drug. I'm blazing a new trail on this one. She said that she wasn't surprised by my side effects, but that they weren't standard. She still thinks I'll feel much better in a month or two.

My face looks like I'm going through adolescence because of the acne, and menopause because of the wrinkles and age spot. Good grief. Still, it's the fatigue that gets me the most.

And I have to confess that the longer it goes on the harder it is to talk myself off the ceiling. Maybe it's a sign that the beast is back? Never mind that fatigue is not usually a symptom of cancer, it still scares me. This is part of the cancer game - no matter how far out from diagnosis I get, these questions whisper around the edges of my mind. It's not as bad as when I was first diagnosed, when the whispers were actually shouts and screams, but it takes up a lot of my energy just to keep those voices soft and not allow them to take over. Generally, I can talk myself down, remind myself that my blood work and tumor markers look good, that I've done amazing amounts of treatment....but it's hard work.

Whatever

I'm really impatient and frustrated.

Yesterday I did my lovely long walk.

By 4pm I was completely, totally wiped out.

I am so tired of this. I want my life back!

Sleepy

I didn't take a "sleep aid" last night because I'd slept for a few nights in a row and hoped my body would do it on its own.

I was wrong.

The down side of that is that it is 5:26pm and I'm sleepy today - oh dear. I will definitely take that Ambien CR tonight.

Walk in the woods

Today I went for a five mile walk. I wished it was a run, but alas my body is not doing what I tell it to do. So, with that understanding, I left home for a walk. Dr. Okorn said that exercise would help cure what ails me, and I am desperate enough to try it!

As usual, I wanted to be purposeful, so I took the dog (of course) and an empty backpack, with the intention of picking up some groceries. I made sure that the most recent podcasts were downloaded, and I plugged my iPod phones into my ears, and I was off.

All the way to Lincoln Park, I didn't think of much, just listened to This American Life.

I walked along the shore of the beach, and looked for orcas (I didn't see any). I turned up the path at the end of the park, and walked back through the woods.

Halfway through the park, I realized what I was doing. I was being completely mindless on my walk. I held my purpose - must get exercise! - in hand, but I was completely, utterly wasting the opportunity. I unplugged my iPod, and listened. I heard many different birdsongs. I could occassionally hear a little lapping wave at the shore. Breezes moved branches or leaves. I saw dozens of kinds of wildflowers (including a gorgeous dwarf lupine plant). I sat on a bench, and found a notebook inside a plastic bag. The notebook read, "Look behind the bench and slightly to the right, in the forked fir tree, for an eagles' nest. Please record what the eagles are doing." I looked, I paced the tree in question, but didn't see eagles. I sat. I observed some more. I heard a terrible screeching squacking sound, and 100 feet or so away I saw a bald eagle at the top of a tree, shrieking at a crow. A man in nylon track pants swished by me on his walk, talking on his cellphone, oblivious.

I spent perhaps a half hour on that little bench, breathing in some fresh air, thinking my own thoughts. It is probably the best thing I've done this week.

I did continue the walk home, stopping by the grocery store for milk, flour, and toothpaste; I did get my exercise; I did wear out Shep. But that half hour restored me. I plan to do that with more frequency....maybe that is really the cure for what ails me.

Accidental accumulation

I was reading comments in a New York Times article about car-less societies, and one of the comments referred to the "stuff" that we accidentally accumulate.

This hits home. As much as I do not wish to accumulate in this way (savings? yes. just stuff? no.) today I emptied many bags out of our attic and filled the back of our Subaru in order to deliver it to Goodwill.

Where does all this stuff come from?! Some of it is from Tessa, and I'm pretty guilt-free about that....she grows out of things, and we pass them along, and that is good. It does seem, however, that I accidentally accumulate things. I am working hard at avoiding accidental accumulation, but it seems that my attic tells a tale that I have a ways to go. I think I've come a LONG way, I think that I'm doing better than ever before....but I'm not "there."

I'm working hard at buying only high quality things, so they won't need replacement. This is easier for me to do now than at any other time of my life, because though finances are tight, we have a household stocked with all of the essentials. When we were younger, we were still acquiring the niceties of life - if someone was coming to spend the night, we might have needed to buy pillows, or extra towels. To serve a meal we were sometimes lacking in the right platter, etc. But now? Now we have pillows and towels and sheets and platters galore, and what is lacking is minimal (despite what I believe when I enter a housewares shop).

Accidental accumlation indeed. Maybe that phrase will help me to be more intentional.

Okay this is ridiculous

In addition to feeling the effects of the drugs, or the drug transition, I have some kind of a cold taking over my sinuses.

And my face is breaking out. That goes along with the theory that my body is going through some kind of estrogen freak out.

What is next?!

Tomatoes - phew

I just spent a couple of minutes verifying when I planted the tomatoes last year. My answer, according to the blog: May 11.

Phew.

I was reading in a number of places that I might want to wait until June. Well, perhaps that is true, but I didn't wait, and now they're in the ground. The good news? Last year we got an amazing tomato crop, and I'm told that last year was a bad year for tomatoes. It was a GREAT year for tomatoes for us, so if this is a mistake then I plan to keep making it.

It made me very happy this morning to pull aside my bedroom curtains to peer out at the newly planted garden. My back aches, my shoulders are tense, and I'm tired....but this was definitely worth it.

Improving?

I've been complaining on this blog for a while, but today I'm noting an improvement. Case in point - it's 9:23 and I'm still dressed and wrapping up my day, instead of in PJs and in bed. I really, really hope that the worst of my drug transition is over. Nobody told me to anticipate such an awful shift when going off Aromasin, but I felt like I was hit by a truck. My theory is that, with the first estrogen entering my body in 3+ years, I was having PMS meets menopause and the result was pretty ugly. I'm hoping that my body will regulate a little bit before I start tamoxifen in June, because the combo fatigue and crummy-feeling was just overwhelming. The continued side effects from my treatment bring me down because not only do they make me feel terrible, but I keep thinking "but it's not supposed to be like this!" When I was on chemo, I expected to feel terrible. So many years out from "heavy" treatment, I thought it would be so much easier. It is awfully hard to move on when my body is reeling like it was happening yesterday. I have to say, this week I felt as bad as I did when I was on chemo - I was that tired and achy and just sort of out of it. I am greatly relieved to have an improvement, and hopeful that it will get better from here, or I'm not sure what I'll do.

Maybe if I felt better it would be easier to exercise and take care of my diet. Weight Watchers is a disaster right now, and the scale has become my mortal enemy. Getting dressed in the morning is a challenge because nothing fits. I wish that was an exaggeration; it is not.

In totally other notes...

I had a great Mother's Day. Ryan went out of his way to give me a nice day, including coffee in bed, making dinner, and (best of all) doing a ton of yard work to get the garden going. I was really grateful for his extra efforts to make my day special. Tessa made me cards, gave me lots of smooches, and told me that I was the best Mama ever. THAT certainly made my day!

Thanks also to Kathleen for a lovely brunch this morning -yummmmmy baked egg dish.

The garden - ahhhh it is so satisfying! The tomatoes are planted, and I got 8 different varieties, including my favorite Brandywines, and several varieties of cherry tomato. It's kind of funny, but I have to admit to wishing I could fit way more in the garden; even though we doubled or tripled the garden this year, it fills up so quickly. Of course, my back and muscles aren't up for much more than we've got going, and it will be a challenge just to keep it watered and weeded....but I'm addicted to growing food.

What we had previously planted:
strawberries
raspberries
blueberries
rhubarb
fava beans
sugar snap peas
garlic
rainbow chard
onions
spinach
mixed lettuces
potatoes
herbs (rosemary, sage, parsley, thyme, oregano, mint, chives, tarragon)
carrots

What we planted today:
8 varieties of tomato: Brandywine, Sweet 100s, Yellow Pear, Green Zebra, Sungold, something-French-that-I-can't-remember....and two that I can't remember at all
basil
more carrots
more lettuce

Flowers planted today:
Granny's mix zinnias
Alaska mix nasturciums
borage

Still to plant:
bush beans
squash (summer and winter)
radishes

The roses are doing well, the hanging pots are doing well (I'm too cheap to buy the pre-planted one so I bought flower starts and filled old pots....they're filling in nicely), and the lupine planted a few weeks ago is triple the size. I'd like to get a few more lupine plants, maybe another rose bush, and a couple more blueberries in addition to huckleberries and salmon berries for a shady corner near the neighbors' yard. I still need to build a path, and I still need to get some sunflowers to plant.

But no matter what I wish was done, I can say with conviction that the garden has a great start. I dream about gardens in future years (another lilac maybe? oh and a hydrangea. and definitely some apple trees in the parking strip....) but the garden for THIS year is going to have a lovely crop, and I will enjoy it even as I dream about future gardens.

I think that one of the things that I love about gardening, in addition to the thrill of eating what I have grown, is that I feel so deeply rooted to the land. I know that I'm doing what humans are made to do, and it feels as fundamental as simply breathing. In WWII they were called victory gardens, and though fortunately mine is not a victory against some foreign enemy, it does feel like a victory to re-learn how to do something so basic as grow my own food. Am I self sufficient? Not even close. But I'm closer than I once was.

Improvements

Yesterday I actually got some stuff done around the house and ran a couple of errands. We went to Paul & Libby's for Ramona's 70th birthday, and I stayed awake. (At 8pm I was exausted, but there was still the ride home....but I made it.)

This morning is the West Seattle Community Yard Sale and I hope to find a table to use as a potting bench, and maybe some tea party stuff. (Ryan's hoping that I find bike stuff.) And then I'm delivering soup to Habitat for Humanity for lunch, and then the rest of the day is quiet and I hope to get the rest of the garden prepped for planting tomatoes etc. tomorrow.

I've decided that part of the way that I feel is PMS meets Menopause. The little bit of estrogen produced by my adrenal glands (well, they produce aromatase, which is converted to estrogen in the body) feels like a tidal wave and my whole body is "off". I am really hoping that things regulate soon and I start to see improvements in my overall health instead of the backsliding I've been feeling.

My hands and feet still ache, but the sharpness has dissipated a bit - so that is an improvement!

This is my life, and I want to make the best of it. It was a rough week....I'm hoping it gets easier soon.

Sleep - with help

I had my annual exam at my general practicioner's this week. We talked about my sleep issues, and how I wake up all the time. She expressed concern about my lack of REM sleep, and all I could do was agree....I know about that, but what is a girl to do?

We decided that I would start taking Ambien CR. I can't tell you how much I hate messing up my body with drugs, but at some point the benefits outweigh the risks.

So, last night I had my first full night of sleep in.....years? I woke up once at 5am but I was able to get back to sleep. I have that post-drug-haze this morning, but the longer I'm up the more it lifts. I deeply, deeply wish that I will have more energy today because of last night's sleep.

Also, I spent some time on breastcancer.org last night, and found a whole lot of women with symptoms like mine. On the YSC boards most women are pre-menopausal and so don't take AIs, but on the breastcancer.org boards the women are older (on average) and I got some good information. I also found one other woman who went off AIs and is having worsened side effects, and that is comforting.

So today I'm muddling through. I am convinced that it will get better, because I am taking steps to make it better. I will pursue every avenue possible, because this is my life and I'm going to have the best life that is possible.

I watched Oprah yesterday (hey that's what people do when they don't feel well, right?) and Elizabeth Edwards was the guest. I was mad that it was mostly about the affair, because I was less interested in that and more in her reactions toward cancer (she has stage IV breast cancer). She said something to the effect of "People think that their life will be a smooth road, they don't expect big bumps in the road. Well, I think that the big bumps are inevitable, and it is my job to make the best life I can, taking those bumps into consideration. This is not the road I chose, but I can choose what to do with my life despite these bumps in the road."

(I'm paraphrasing, and probably poorly. Apologies to Ms. Edwards.)

So, I am reminded yet again that this is what I must do. I've had some crying lately, and confusion, and fear, but I can craft the life I want. And I want a beautiful life. I am determined to go out and get it....despite the bumps.

Misery loves company

I went to breastcancer.org and found someone who just went off AIs and feels worse, too. I feel bad for her, bad for me....and not so alone.

Prayers for Hannah

Remember the sweet 10 year old girl (she just turned 11!) that I told you about? She's in surgery RIGHT NOW for her mastectomy. I happened to click on her blog and read the update that she'd be in surgery at 2pm today, a bit earlier than planned so that she'd be out for Mother's Day.

Prayers for Hannah are flying from me. Prayers for all of the little girls who one day face breast cancer....and particular prayers for this youngest of young patients to have to undergo this.

http://www.ourlittlesweetpea.com/?p=142&cpage=1#comment-971


PS No, I've never met Hannah. I've never had any contact with her except through her website, and one message from her Uncle Jordan in response to my post about her. But how can I not be touched deeply? She could be my daughter. She could be your daughter. And I know all too well about breast cancer and its effects....so I care.

Something...

...is wrong with me.

I have not felt this fatigued since I did chemo, and I don't know why. It feels worse day by day! I spent the morning at Tessa's school (my Thursday morning routine) and now I feel like napping. Except that I haven't worked this week, the house is a mess, I need to do errands....

And all that makes me want to cry because I just don't know how I'm going to do it. This is SO unlike me, I can't even tell you. It makes me so sad. Where is my energy?

I still have my workout clothes on, but I haven't worked out yet.

I have got to figure this out.

I am bailing on a fun girls' night out tonight because how on earth would I enjoy myself at 8pm and beyond?

This is ridiculous. Aggggggggggggggggggggggggggghhhhhhhhhhhhhhhhhhhhhhhhh.

And I am irritable. REALLY irritable. Please let me apologise in advance. I am so miserable right now that it's leaking out everywhere, and if you're in my path it might leak on you. I'm sorry. I'm sure that I love you, I've just got issues.

Today I feel irritable, my house is a mess;
I spilled all my coffee, and I don't fit my best dress.
My energy's sapped, my hormones awry
And when I look up there are clouds in the sky.

Today I am irritable, hope tomorrow is better.
Some change! Anything! Even the weather.

(sigh.)

Exercise

I'm signed up to run a half marathon at the end of next month.

I'm more out of shape than I have been in 4 years. And at my highest weight in 4 years. (Ugh.)

The doc said, "Get exercising." There are a million reasons to do it.

Today I've got my running clothes on. Fingers crossed that this gives me energy rather than taking away more energy....

State of being

It is kind of scary to feel this low-energy fatigue.

I used to be energetic, right? I used to do all kinds of things! Did I use up all of my energy already?

I'm in bed. And I'm so tired.

I went for my annual physical today. I'm going to wait to see if going off Aromasin helps, and if I don't feel a bit better in a month then they're going to send me for a sleep study. I am awake often through the night and I feel like I don't get any REM sleep and of course that could be causing problems. If it's joint pain from the Aromasin and hot flashes that are keeping me up, then maybe it will get better on its own. I also have a sinus polyp, so do I have problems like apnea going on, too?

I'm also going to try a "sleep aid" - Ambien CR - again. Since I don't have trouble falling asleep, I have trouble staying asleep, the controlled release might help.

I am going to figure this out. It is impacting my every minute these days and I'm so tired of that. (Bad pun.) Enough already.

Bit better

Well, I skipped dinner last night (and those who know me know that I NEVER skip dinner!) and tossed and turned last night in bed, but I'm feeling a bit better today. Slogging through!

I have my annual physical today, so I happen to be going to the doc today anyway.

I'm sure that this is nothing, but for "nothing" it's highly inconvenient. Enough already!

Sick?

I feel crummy. Uh oh. (Sigh.)

Yup, it's still me

Exhausted. 5:48pm. IRRITATED.

Simplicity Circles and Life

Last night was our second simplicity circle, kindly led by Rev. Peg. Ryan and I have elected to hold it at our house so that we can both attend without worrying about a babysitter. (This is a mixed blessing. Tessa was full of energy yesterday, and I didn't do a good job of balancing my mom duties with my simplicity zen. Hmm. I'll do better next time.)

I was fascinated by the fact that I was the only one in the group who viewed simplicity as about time; the others in the group were widely focused on de-cluttering. This does make sense to me - if you can't locate your stuff, it's actually a time issue. For me, though I struggle with some clutter (who doesn't in America?!) I generally feel like I have it under enough control that I just want to focus on time right now. How is it that I feel pulled in so many directions?

Every minute of every day feels full. When I am as fatigued as I am, that is particularly difficult. I need downtime, and I realize that I don't give myself much of it. As I add "working mom" - even part time, even from home - to my list of life, I am realizing this more than ever. When I took on the project, I didn't let anything else go. Well, where did I think my time would come from?

I am learning how to say "no" to many volunteer opportunities, even though it pains me. I'm still doing volunteer work at Alki and Family Promise, but not as much as I had been doing. My house is clean, but not as clean as before. I'm still doing home cooked meals, but yesterday I bought a rotisserie chicken from PCC as the meal's centerpiece. I'm still gardening, but it always goes more slowly than I hoped.

Little adjustments here and there. I will find my balance. But simplicity isn't simple, it's complicated.

Are you living simply? Are you embracing your innermost ideal self and letting go of the clutter of your life, whether that's stuff or time? How are you paying attention to what is real and best and important, and letting go of the minutea that gets in the way? I am really interested in this dialogue - please share your thoughts in a comment or an email. I'd love to know what you're up to.

"Live simply that others may simply live." - Ghandi

I'm pretty convinced that I am on to something here....but I have a long ways to go.

Waiting for her to show up

I've been off Aromasin for a few days now.

My new self has not shown up. It is 8:04 and I'm going to crawl into bed now, while Ryan and Tessa are reading together. (She's reading HIM a story! I LOVE IT! She still insists that we read to her, which I also love.)

Anyway. I'm tired of feeling like this. I am not to expect a change for a month, but man this stinks.

It does not help that I was awake about a zillion times last night. Grrrr.

I'm waiting for great changes...

West Seattle Days

This morning, after coffee and snuggles in bed (I love it when Tessa comes bounding in on the weekends, filled with smiles and snuggles!), Tessa and I took off for the Junction, on foot with Shep and an empty basket, and Ryan set to working on a friend's bike.

Tessa and I spent a few hours at the Sustainable West Seattle Fair, and we even got our picture taken with the mayor, (I am hoping that exposure to politicians will help her to feel connected to the political process; she's had her picture taken with Mayor Nickels and Gov. Gregoire now.) which you can view on the West Seattle Blog at www.westseattleblog.com. Tessa got her "Undriver" license, whereby she promised to encourage her mom to carpool, skip the ride, bike, bus, or walk. We got free "green" lightbulbs, some magazine previews (for "Yes" and "Edible Seattle"), and literature about saving Puget Sound, visiting Camp Long, and the rest. Tessa got an on-the-spot crochet lesson with Elena (love running into friends!), and got her face painted by CoolMoms for a Hot Planet.

And then we headed to Skillet for lunch, and for meeting with Michele & Dave (Everett also in attendance, but Elliott was with his Grandma and Grandpa). We picnicked in the grass, Tessa picked weed-flowers from an abandoned lot, and we enjoyed the sun. And we also went to the Farmer's Market - smoked salmon, Cirrus cheese, asparagus, greens, the last frozen raspberries....

Ahhhhhhhhhhhhhhh.

And now I've set the timer to take a half hour break, before I get in a couple hours of work on the book in preparation for tomorrow's meeting with my boss, Fred. I'll rest, then I'll dive back in to work on a sticky transition paragraph that's bugging me. Tessa and Ryan are off to a birthday party for a classmate....and Tessa is crocheting in the car.

What a lovely day.

Insurance battle

I'm due for my annual breast MRI.

I can't have mammograms, because a) the skin tissue is so thin that I literally imagine that it would burst under the pressure, and b) I have lymphaedema.

I would think that those reasons would be suffiencient, but no. Aetna says that I can't have an MRI without a mammogram.

No way am I getting a mammogram. It sounds dangerous to me, given my "unique" medical history, and I can't believe they'd suggest it. Plus, I fall into every risk category (greater than 25% of lifetime recurrence, implants, radiation to the chest...) so why on earth would they fight this?

I'm counting on Dr. Rinn to make my case but MAN this hacks me off. I have enough to do without fighting this!

Okay, back to writing. Harumph.

Balance

Today I'm working on balance. Working on the book....but trying to get some laundry done, too, and un-bury the house (which has become a disaster since I stopped dedicating so much time to it).

I want to work. I am falling in love with my Hunts Point project, really getting into it, and it's satisfying to me in a way that housework - ha! - never could be.

But I had a rhythm in my day that is lost. I used to keep the house relatively clean, with regular vacuuming and bathroom cleaning and all that. Laundry was pretty caught up - always a load to do, but not a mountain to do. Dinners were more planned.

And right now I'm scrambling, and I feel like my life is coated in doghair (yechhhhhhh) and my bathroom feels gritty and the laundry IS a mountain. So, I spent a couple of hours this morning working on that, and now it's not as totally disgusting, although not great, and now I'm going to try to immerse myself back into the book.

I just hope that the phone doesn't ring and that I don't get distracted by some other undone chore and that I don't find myself wandering to the fridge, which is oh-so-accessable....

This balance business is tough.

Swine Flu in Seattle

Well, the word is out that a child in Madrona contracted swine flu somehow, and his school is closed for 7 days, with precautions to families not to meet outside of school. A pediatrician in Everett is also suspected to have the disease, and through no fault of his/her own saw 22 patients the day she got sick (felt good in the day, sick in the evening). No known cases in West Seattle, but I'm concerned.

Dang.

(Really, thinking something stronger than "dang" right now.)

I am at the public library downtown, waiting for the Seattle room to open, and browsing the web. Reading this, I have to suppress a strong desire to run back to West Seattle, swoop up Tessa, and bring her home for a week. House arrest doesn't sound very fun, but the idea of my little girl getting this......it makes me shudder.

Instead, I'm going to grab what I need to keep working (last time I was here I couldn't get everything before I needed to leave to pick up Tessa) and then I'm going to run ot the grocery store to pick up essentials and I'll pick up Tessa at the regular time. I plan to treat this like a forecast for snow: check the pantry, make sure that we're stocked up, make sure that the car is filled with gas, and plan to ride it out. I think I'll check out some extra library books, make sure that we have enough glue sticks, and plan on being prepared for some time doing art, reading, watching movies, popping popcorn, and playing on the swingset.

I am trying to be zen about this but I'm feeling frazzled. "Level 5 pandemic" is not vocabulary that I'm comfortable with. But my goal is to not be some crazy panic-stricken fool, either.

Isn't it always something?!

More good news!

http://www.breastcancer.org/treatment/hormonal/new_research/20081029b.jsp

About a third (31.4%) of the women had new joint pain in the 3 months after starting hormonal therapy. During the next 9 years, these women were 40% less likely to have breast cancer come back compared to women who didn't have new joint pain.

So maybe all of my horrible side effects were actually worth something?!

Getting ready for a whole new person

Me, that is.

My beloved oncologist called me back. I told her about my issues with Aromasin (and Femara before that). I told her "I don't think I can do this any more." She hooted and applauded! She told me that she's been sending me subliminal messages to go off the AI and switch to tamoxifen. With the new study showing three years of an AI followed by two years of tamoxifen equal in efficacy to five years of AI, it is a no-brainer.

She told me that my fatigue was related to the AIs, and the pain is related to the AIs, and that both should go away. Hot flashes will reappear, but the rest will go away. I will feel like a new woman.

Pleaseohpleaseohpleasepleaseplease....

The prescription is to go off the AIs for a month, and then start the tamoxifen (right after I return from Portland). She said it make take more than a month to get the AIs out of my system, but after a month on tamoxifen we'll know how the side effects will be in the long term.

I am so hopeful. I really, really, really need this break. I am so tired of trying to move and feeling so bad. She said I really might feel like my old energy is back.

I don't ask for a whole lotta prayers, but I'm asking now. I really feel like I need this to work. The prospect of feeling this bad for the rest of my life is really scary, and I need a change for the better. I need it so that I can focus on the Hunts Point book, focus on my family, focus on running, focus on all the many things that I care about.

Tonight, when Tessa goes to bed, I will go to bed. Hopefully this time next month I won't feel a NEED to do that any more.

A whole new me. I could really get used to that.

Bad dreams

This morning, early in the morning (5am or so) I had a bad dream.

My hand was hurting, so I went to the doctor. They did scans, and solemnly told me, "We're sorry, it's hand cancer. We'll have to remove your hand. It's on both sides of your wrist, and into your fingers." I remember thinking "I wish it wasn't my right hand" and then I woke up.

And in real life, my hand and wrist were just hurting hurting hurting. And I realized that the pain had gone through my dream. Phew - what a relief to realize that I didn't have "hand cancer," whatever that might be.

But I have pain. Real pain. Pain that makes it hard to move sometimes. Pain in my wrists, fingers, feet, knees, everywhere. Pain that wakes me up at night. Pain that makes me change the way I move around. Pain that makes me slow(er). What I do, I do despite the pain. It's a mind game I play. So when you see me moving quickly, it is in spite of it. And I'm so tired of that.

I think the pain is making me tired, too.

I blame it on the Aromasin - it's known to cause joint issues.

I have a call in to Dr. Rinn and I'm hoping for a return call this evening. I do not want to take one more day of AIs. I feel ancient, and I have no energy, and I just hurt so much.

Someone pointed out to me, "Look at your blog - you have good days, too." Yes, I want to say, this is true. I have so much in my life to love. But the pain is shadowing all of it. It is with me all the time now and sometimes I push it to the background so that I can focus on something else, but it keeps coming back.

I'm hoping to switch to tamoxifen. One of its side effects can be weight gain. I hope that I'm immune.

When I was undergoing chemo, I thought that anything would be better. With radiation burns, I thought anything would be better. And now....I know that there are lots of things that are worse, but I do not feel good. Or good enough. And I want to change that.

Implications

I am following the story of little Hannah, the ten year old with breast cancer. Her family has started a blog, and I follow it with a prayer in my heart for Hannah.
http://www.ourlittlesweetpea.com/

I have been reading comments, and I had to do a public reply for some of them.

A common thing to say to people facing a serious disease is "Just be positive, and you can beat this!" or some derivation of that statement.

On its face, this is good advice. When we approach our problems with an open heart for solutions, it helps. The way we perceive our problems can be part of our problems, and if we just mope and complain then we have extra problems, for we miss out on the sweetness when we're focused on the bitterness.

But I still hate this advice. Know why? Because it is not always possible, or appropriate, to be positive when you have a serious disease. Having someone who is in perfect health say "just chin up!" sounds like "stop whining!" Sometimes, it is even insulting. It is APPROPRIATE to cry, to rage, to ask unanswerable questions of the universe. What if I die? Am I strong enough to fight this? Why me? Those questions are painful, and to me, that is perfectly rational. Nobody says, "Hurray! I got picked for breast cancer! Please cut off my breasts and take my hair and make me feel sick and old because I just KNOW this is going to be a character building experience! I'm so grateful!" Maybe there are elements of that in our path to acceptance, but there is some negative thinking, too.

And that is OKAY.

The other part of the advice that makes me hate it? The implication is that, if positive thinking will cure me, then negative thinking will kill me. That makes me think that I'm not allowed to have doubt or fear, and I think that is down-right unreasonable. Mother Theresa had doubt (her letters were published after her death) in her faith, and she is a saint. I am NOT a saint, and I am allowed doubt. It does not make me less of a person, or less of a survivor, it makes me HUMAN. My positive thinking will not cure me any more than collapsing into tears will kill me. Both are real, and I need to be allowed to weep or rage against the unfairness sometimes, too.

I'd like to believe that I am more positive than negative, that I have confronted this disease with a little bit of grace sometimes, but I am not perfect, and I did not approach my disease perfectly, especially if "perfect" means "perfect optimism."

Yes, it hits a nerve with me.

So next time you're talking to someone with a major hurdle, encourage them, certainly. But please don't tell them that their positive attitude will save them. It didn't save me from getting breast cancer in the first place, but I don't think I brought this on myself. And if I feel doubt, or fear, or anger, it doesn't mean that I can't move on....it means that I feel grief. I bet you would, too, but I hope you never get to experience what I've experienced.

The economy

http://www.nytimes.com/2009/04/30/business/economy/30econ.html?hp
In short? It's bad. It's not getting better.

Our small family is doing okay right now. We are fearful because BearingPoint is still in Chapter 11 and we don't know what will happen next - the company is breaking up into pieces and being sold, and we don't know a) if Ryan's contract will be sold and b) if the buyer of said contract will keep the BearingPoint employees or place their own people in the contract. Those are some pretty big concerns for us. There are a lot of great people out there (13 million, according to what I've read recently) who are underemployed and looking for work, and so a job loss is particularly scary in this economy.

If Ryan's job does NOT go away, we are doing well. I'm working like mad on the Hunts Point book, and Ryan's paycheck pays our bills, so with the combo, we're digging ourselves out of debt.

It's kind of tiring holding my breath all the time, though.

Tired

If I was a cursing girl, I'd insert a lot of curse words here.

I am so tired. Yes, I worked today, and it was great. (And the folks at the Public Library - the Central Branch downtown has amazing collections - were so kind and helpful.) I used microfiche for the first time since college, and I got to thumb through newspaper books from the 1880s, and it was all just so darned amazing to get such rich data.

(In case you can't tell, I'm working on the "early days" of the Hunt/Hunt's Point story.)

I will have to spend many more hours there to get what I need, but I'm so happy to do the work.

But I'm tired and grumpy and Tessa was amazingly grouchy and I worry that she's getting sick and my house is a mess and I have phone calls to return and paperwork (bills) to go through and aghhhhhhhh.

When did I become such a whiner?

Maybe tomorrow I'll feel more rested.

"Mommy, we're supposed to PRAY!"

The problem with Tessa is that sometimes she listens to me. Yes, you read that right. Of course I get irritated when she doesn't listen, but yesterday I got irritated when she did listen.

And I don't really think I'm all that irritable, but....

I digress.

Anyway, yesterday Tessa repeated my words back to me when I wasn't prepared to listen. We had gone for a walk - five blocks downhill - to see the Hisatomi's new puppy (hurrah!), had a lovely visit, and were headed home. Tessa had her Razor scooter, and we were enjoying the weather and the day, though I was feeling the push to get a few things done and to move on to the next activities (planting pots, etc.). Tessa said she wanted to stop (Mama, it's so steep!), and proceeded to look at the clovers and the daisies in a patch of grass. I waited what I thought was a reasonable amount of time, and said, "Okay, now let's go."

Tessa said, "No, Mommy, we're supposed to PRAY."

Huh?

Oh, yah.

Yesterday I did the children's story (the story for all ages) at church. Since the service was based on Mary Oliver's poetry, I read "The Summer Day" to the children, and then we talked about different ways to pray. Of course, you can pray in church, and you can pray like a grace before a meal, and you can pray "pleasepleasepleaseplease" and you can pray "thank you" and you can pray a yogic breath....and you can pray by paying attention. We talked about how Mary Oliver likes to pay attention, to wander the fields. I mentioned that the kids needed to help their parents with this kind of prayer, because adults get so grouchy and schedule oriented and their cell phones keep ringing and they're always doing laundry and carpools and hurrying and scurrying....but children know how to live in the moment, how to get caught up in looking at the small stuff, how to enjoy just being where they are and not thinking about what happened yesterday and what will happen next. I told the kids to help their grown ups, because we need help with this kind of prayer, and it's an important prayer, too.

And when I wasn't thinking of it, Tessa called me on it.

And I didn't respond properly. I said, "What? Oh, that. Ya. Hmm. Well, honey, don't you want to go home so you can play on your swings?"

I have a lot to learn.

I've been listening to a podcast about mindfulness that is right on track.

Better yet, I took Shep for a run/walk and we walked to Colman Pool and back. Out in the middle of Lincoln Park, I took off my headset and just breathed in the smell of low tide and felt the wind and saw so many birds and wildflowers at the side of the trail and people with their dogs and I stopped and let Shep sniff every one (only the ones who wanted to, I should say). I was done running anyway- my endurance is zip - and the slowing down did more for me than any power walk, anyway.

Last night after realizing my mistake yesterday I told Tessa not to give up on me, that she could teach me, that I didn't know why I got confused so quickly, but that I like her lesson.

Thanks, Tessa.

This I believe

There is a program currently on NPR, and available on Podcast, called This I Believe. It's one of my favorite things to listen to, as every essay brings a new perspective, and makes me question my own ideas. (Questions are good.)
http://www.thisibelieve.org/index.php

This has me ruminating about what I believe in. It turns out that it's not so easy to narrow it down to a few succinct sentences; it's not easy to summarize a lifetime's beliefs in one small essay. I'd like to write my own This I Believe essay, but I can't yet, because as usual, I haven't come up with the one defining belief that would make it all worthwhile. I'm thinking about it, though, and I'm starting to define a list of things that I believe in.

- Having cancer does not make anyone a better person. In perusing the "This I believe" archives, there are countless essays on cancer, and many of them contain the word "gift." Well, I'm here to tell you that I do not believe that cancer is a gift, unless by "gift" you mean "useless, ugly item that one can't get rid of and wishes one had never received." For me, the word gift is full of positive connotations: the love of the giver, the delight of receipt, the warmth of friendship, the smile of knowing that someone thought of you, the joy of Christmas or birthdays or (my favorite of all) just the joy of giving. Cancer evokes none of these images for me. I think that the people who believe that cancer is a gift think that cancer somehow made them a better person, and I'm glad for them, but I utterly, completely, adamantly disagree. I think that cancer amplifies what you already have, but I don't think that it makes anyone better, or worse. For some, actually, it causes them to hide their head in the sand. For some, cancer is a weapon that allows them to be unkind to others under the guise of "hey I have cancer I can say whatever I want!" And certainly, for some, it causes them to look deeper into themselves and pull up whatever they like best from inside. Cancer did not make me a better person. I believe that cancer was just one of life's many reminders - admittedly, a louder reminder than most - to be who I want to be, but cancer did not change who I am. Cancer changed my life, but it did not change me.
(Caveat: I am a changed person. But I believe that life did the changing, not cancer. Still working on this idea.)

- I believe that my daughter is the wisest teacher I have ever met. Through her six year old eyes, I learn perseverence (learning the monkey bars, despite blisters from her attempts); I learn observance (oooooooooooh look at the bug's wings - they're so pretty!); I learn faithful love (six year olds know how to love a friend like no other); I learn how to laugh at just about anything, including bad jokes; I learn how to use my body (freely, in running and climbing and jumping and without a thought). When I hear her use my words, I learn who I am, and what I like and loathe about myself.

- I believe that simplicity is the most complicated idea. I've heard "less is more" more times than I can count, but I also see that there are entire sections at the library how to live with less, how to enjoy more with less, how to de-schedule, how to focus on what's important and give up the rest. It's not easy, being simple, and being simple is not simplistic.

- I believe that without compassion toward self we are completely incapable of true compassion towards others.

- I believe that perfection is a curse and not a blessing, and that pursuit of perfection ruins lives.

- I believe in birthdays, and in marking them with celebrations of simply being alive.

- I believe that the food I prepare is a sign of my love. Some meals are celebratory for people that I love, but that's not quite it.... I believe that when I take the time to find healthy, delicious food ideas, and prepare them well, I am demonstrating my love not only for the people who will eat my food, but for being alive, for caring for my body, and even, if done right, caring for the earth.

- I believe that we will never find peace through war.

- I believe that it is possible to have too many friends.

- I believe that in an effort to not miss out on anything, I may be missing out on the most important things of all.

- I believe that everyone struggles, and that knowing that, life is much easier.

And I could go on. What do you believe?

http://www.thisibelieve.org/index.php
(Note: you can read the most popular, the most recent, or you can search by topic. Some 60,000 essays have been submitted so far. I'm still working on mine.)