RSVP

We're gathering in DC Saturday afternoon, September 20, to celebrate Rachel's life, thanks to an awesome crew of women and men who are putting together the commemoration. We've made every effort to invite everyone who knew her.

If we missed you somehow, please phone or e-mail one of us (even Rachel) and we'll get back to you. I won't post any details about the gathering or contact information here because the Internet is a big place with all kinds of people.

For the same reason, please don't post your contact information in a comment. If you knew Rachel you know enough to track at least one of us down.

It'll be wonderful seeing you there if you're able to make it.

Good-bye, Torch

Torch (Rachel) died peacefully this morning in our room in her grandmother's house. I'll leave it at that for now, except to thank all of you who have expressed your love for her in comments here and by other means.

News of Torch

I'm sorry to have to tell you that Torch appears to have embarked on her final journey, if you'll forgive the greeting-card cliché. At about 6 a.m. today, after a difficult night of pain and medication, she slid into a peaceful sleep here in her late grandmother's house. The hospice nurses tell us that this sleep is the best place for her to spend the days she has left.

Our three weeks here on the Cape have been a joyous, sad, and sometimes exhausting round of visits from dear friends, family members, and wonderful health care providers. Torch spent many hours holding court or just basking on the deck overlooking Pleasant Bay, watching the birds feed and the chipmunks squabble over the fallen birdseed, and enjoying her grandparents' beautiful flowers. She had said all her good-byes and knew it was time to let go.

A few events stand out. One was a gift of love to her family that will bear fruit for years to come; those of you who were directly affected know about it so there's no need to repeat it here. The other two are related to her professional work: a Compassion Award in her honor by one coalition partner organization, and yesterday a gift from another coalition partner, from the woman of whom Torch often said, "She's who I want to be when I grow up."

A final note: since some of you have asked, the poem in Torch's final post from DC is not her composition but was written by Dawna Markova.

It's Time

The tumor is growing despite 14 months of chemo, radiation, and Avastin, and is the likely cause of Torch's problems with speech, balance, movement, confusion, etc. There are no other reasonable treatment options and it's time to stop. When we tried to pin Dr. Smile down on the time she has left, he said to think in terms of weeks or months, not a year or more.

We cried some, laughed some, and talked to many of you (and wish we could have talked to you, too, who are seeing the news here for the first time). Torch decided that it's time to go home; at this time next week we'll be on the Cape to stay as long as we can be together.

This blog will be silent from now on unless there's major news to share. Torch asked me to end it this way, mostly drawn from the end of "Inside Her Brain...," the predecessor of "Risking Significance".

It's time.

I will not die an unlived life.
I will not live in fear
of falling or catching fire.
I choose to inhabit my days,
to allow my living to open me,
to make me less afraid,
more accessible,
to loosen my heart
until it becomes a wing, a torch, a promise.
I choose to risk my significance;
to live so that which came to me as seed
goes to the next as blossom,
and that which came to me as blossom
goes on as fruit.

Peace out.

Frabjous Day!

Three days into her new medication, Torch volunteered that "I feel better this morning." This is huge, since the last two days were all downhill.

Both her walking and her speech are noticeably better. We're not taking anything for granted here, but this alone is enough for celebration.

[Added after a couple of you had commented:]
Torch has asked me to clarify that she is still struggling with the same symptoms - no miracle cures here. Also that there are new symptoms, like dizziness, that the medication may be causing. This will take time.

...Is Good News

At the place where Torch and I are, along with many of you, the best news is that there is no bad news.

Dr. Smile's nurse came bouncing gleefully into the examination room near the end of this afternoon's long session to tell us that Sunday's MRI was excellent. The "flare" of edema was significantly less widespread through the left side of her brain and a worrisome spot on the late May MRI was all but invisible. There appear to be no new nasty things growing inside her brain. The nurse credited the Avastin treatments for this promising result.

Like the good news from last week's CAT scan, this leaves us without an answer to the question of why Torch can't walk or talk for the most part. On the theory that these difficulties and her rare falls (maybe twice a week) result from some sort of seizure activity in her brain, the nurse sent us home with a prescription for a seizure medication.

If it works two good things will result: Torch will again be mobile and communicative, and she will be able to start tapering off the steroids.

Stay tuned.

Another Torch Update

Torch asked me to post a quick update:

The July 4 weekend was very scary, with her symptoms (speech, movement, confusion) worsening daily and no response from Dr. Smile's nurse or anyone else at Hospital J until this Wednesday, five days after the holiday. Once we made contact, though, things moved fast.

• A CT scan Wednesday showed that her brain was not bleeding.
  
• We got pemission yesterday (Thursday) to increase the decadron to triple last week's dosage; that should help reduce the brain swelling though she isn't feeling any change yet.
• She will have her MRI Sunday, 11 days ahead of schedule, and meet with Dr. Smile and the nurse Wednesday, eight days ahead of schedule.

She is still not a happy camper but the scariness is receding. Oh, and we've managed a couple of restaurant outings and a very cheerful screening of WALL-E last night.

But remember the discussion of sneezing a few posts back? Yes, she has another cold, a doozy by the sound of it. Oh joy.