The Ego Doesn't Know

I've been hearing this theme frequently in the world lately. The Ego is limited in its wisdom. It tells us it knows how to do everything. Wrong. The Ego doesn't know how to ride a bicycle. Our wise body-mind does.

It's not possible to plan and execute a rock climb completely in the brain. 20 feet up, it begins (quite sensibly) to scream "WE COULD DIE UP HERE". One must climb from a different place. Call it faith or hope.

I was given the terrible gift of living in that place as my diagnosis was made and treatment began. Now, as I'm getting back toward "normal", how do I continue to live, make choices, confront my limitations from a place of my body-truth, of faith? I'm approaching the season of my employer's annual fundraising gala, an infamous time-sink. I so want to live more healthfully into the many needs of this event. How?

Well, tonight I'll start by getting off the computer, doing my physical therapy, and remembering the gifts of the weekend: sun, rich words, a game with my sweetie, time with friends. I'll lay this question before God. Then I'll drink chamomile tea and leave the answers for tomorrow.

Rolling Through Half-Way

I've made it to the mid-point of treatment. Either my energy has improved a good deal or I've gotten used to "the new normal". There are signs of change. At work, the annual gauntlet of January grant deadlines reminds me that last year I was putting in 50 & 60 hour weeks. Not this year - not even possible. I've come to think of this as God's way to help me not overwork -- a blessing if I choose to see it as such.

I'm still in negotiation with the blastocytes over Who Really Owns the real estate of my intestines, which has meant a fairly restricted diet since November: no sugar, alcohol, potatoes, milk products, flour, etc. We're depriving them of things they might like to eat, making it easier for caustic herbs to scrub 'em out. Last week I got to add parsnips & quinoa into the menu. I never imagined that parsnips would seem exciting, but lemme tell you, mashed parsnips with garlic and olive oil casts a bright light in a world without potatoes.

Here's what supporting my healing these days:

• Bicycling - pretty much every day. We just tricked out my cycle with more equipment. I think it looks like a reindeer. James proposes wildebeast. See pic above & suggest your own antlered critter.
• Silent retreats - once a month at a Benedictine convent in Lacey. Spaciousness to remember what my source really is, to put my little list of worries into a bigger context.
• Physical therapy - a juicy blend of yoga & pt, Miss Adrienne is addressing several long-term movement problems in addition to recovering from the mastectomy. It's Fabulous!
• The wonderful warm wishes of friends and family - yup. You help.

Here's sending wishes for a healthy and rich 2010 to you all.

Letting Go

"The Hardest Damn Thing in the world is to let go", my old friend David tells me.

I just cancelled all the performances I'd scheduled for the spring of 2010. I don't think I will have the energy to work full-time, rehearse a show, and expend any self care. Damn. Damn. Damn. Lance Armstrong rode marathons and Lynn Redgrave performed on Broadway while going through chemo. I am struggling to not judge myself for my reality.

I'll miss Emma Darwin and Rumi this spring. They are good people to spend time with.

Foul Weather Blogger

OK. Maybe I'm not obsessive enough about the computer to keep up with this blogging thing. Sorry I've been gone, for those of you have expressed so much care.

Or maybe I'm just a foul weather blogger. I've had weeks of fairly good recovery: learning to stabilize with my new energy level, getting back to work full time, having a ball with my physical therapist, gaining strength. The Herceptin treatments are not taking me down as much, which is encouraging. However, I can see that it's a constantly changing road

BODILY FUNCTION WARNING! READ NO FURTHER IF YOU DON'T LIKE POTTY TALK! The last few weeks have been odd due to unusually persistent diarrhea. After 16 days the diagnosis came through: I have parasites, with the sci-fi name of Blastocyte Hominis. James says, "You always did attract an unusual crowd." At least we know. I'm taking a course of antibiotics and laughing about it a lot. Weren't Blastocytes weapons on Flash Gordon, or a colony of aliens in Buckaroo Bonzai?

This week is a fundraising event at work, which seems to be going fairly well. However, I'm utterly exhausted after a day of corralling volunteers, lassoing stray details, and herding guests into table assignments. Time for some Doctor Horrible and chamomile tea.

Molasses

The Herceptin treatment is sticking with me longer than I'd expected. I spend part of each day moving through molasses. On days I can take naps & don't have to work, this is not so bad. Today it became frustrating. Will it stay this way? What happens when I add in Tamoxifen, which is also supposed to create fatigue?

What an interesting way God offers me to slow down.

On Monday, James & I celebrated part 3 of his birthday, bringing the set of Boules balls he asked for to a court along Lake Union. We played this simple French peasant lawn game as neighbors ambled the street, gulls flew overhead, waves lapped the shore nearby, the sun moved toward its bed and the moon rose next to St. Mark's Cathedral. Damn. What a good life.

Today I was fitted for my prosthetic breast in Nordstrom's while their famed pianist played live, piped into the dressing rooms: "Every move you make I'll be watching you." OK. That was truly weird.

First Treatment

Friday was my first treatment with Herceptin, a spiffy designer oncogene, custom tailored to match the HER2-neu proteins that stick out of my cancer cells. Herceptin latches onto the proteins & calls in the bouncers -- the immune system.

The hospital was running unusually late, so I didn't start my treatment until nearly 4 hours after it was scheduled. But they treat you very well: sandwiches, fruit, juices and A CUSTARD CUP. It took about 2 hours for the liquid bag of meds to drip into my system. As predicted, I felt quite flu-y after. It was weird to feel cold in the midst of Seattle's heat wave. Luckily I'd cleared my day, so went home and curled up in a shawl with a guilty-pleasure: a Hugh Grant dvd my sister sent in a box of other entertainments. The next day I needed to take a 3 hour nap, but otherwise felt fine. Future treatments are supposed to be easier. Boy, am I getting off the hook.

My little bag of clear fluid apparently costs $2000. Discovering this during my cost-estimation research had me wondering: Is this really worthwhile for the 3-5% reduced rate of recurrence I'm getting from it? More research, prayer, and reality checking: this is just what treatments cost. Accept it: my health is worth the cost of a new hybrid car or 6 months in Italy. I tell all this to Kevin, the droll nurse who sticks me. He reports that $2000 is cheap. There is a med for pregnant women with a particular blood disorder that costs $45,000/bag.

I'm getting off easy. I am surrounded by blessings. I am grateful to my toes that God & some clever people invented insurance.

Deciding To Launch

We have been watching peregrine falcons raise their chicks on a ledge 57 stories over downtown Seattle. When nearly ready to fledge (take their first flight), the young spent hours looking down, cocking their heads at all angles. "Look, there's a pigeon! Hey, that wind feels great! Boy. It's along way down." That's how it feels to consider cancer treatments.

For weeks I've been peering at all the options. Today we took to the air, agreeing upon a decision for treatment. My oncologist fully endorses it AND THERE'S NO CHEMO!! It's been a stressful decision, weighing data, side effects, desired outcomes, places where the data has no clear recommendations. Thanks to the internet and a family friend (hi Fran!) who's a medical librarian, I had lots of real science to consider. It was fun to walk in with a study, hot-off-the-presses that even my docs hadn't seen. They all wanted a copy. After sifting data, it really came down to what I was comfortable with. David B did his best Counselor Troy imitation, as sounding board and companion for the final informational meetings. At times these felt like negotiations. Next week I'll go in for baseline tests, and start the meds on the last week of July.

For those who like the nitty gritty: I'll be savoring intravenous draughts of Herceptin & nibbles of Tamoxifen. The first one addresses the HER2-neu aspect of my tumor. The second addresses the hormone receptors. Neither has highly toxic side effects. Between them, my statistical likelihood of recurrence within 10 years has been reduced to about 4%. Add in vigorous exercise 5 days a week and it dives down to 2%. I have a shiny new YMCA card: it's not as photogenic as the falcons.

For those who like bird stuff, you can read about the peregrines on the website for the Falcon Research Group, frg.org. Follow the link to the falcons who nest on the Washington Mutual Tower. We usually watch them through a spotting scope, but there's also a webcam with a much closer view. They're all gone now, but there's always next spring!