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.

Big Or Small

Where I look, there is a mighty small world for me. I am unable to reach past the space I see - there are diminutive words of mine, and they are tiny. It turns out to define the corner.

The front window holds the recliner and it is the only article of furniture owned by me, and it occupies that spot and that which I have inherited. But as a result, I can watch the world. I see the shadows shift in the light; brightness and softness hang above me. More than anything I choose the aspect, I think.

From a certain point I can see. Two or three very ambitious handymen measure out the distances from my window, ever so carefully adjusting the points of the porch, and they come out perfectly. When they return I am impressed but do not take it further - I am observing, not part of the scene.

Of course, I see the most from La Roca de los Siglos. The King Emmanuel Baptist Church meets once a week and they are wonderful, but the Spanish Pentecostals begin once the Baptists are finished with their services. The exciting part, read and translated far beyond the days known, is THE KING OF ALL KINGS! And it is the basis of VERY stirring days. Which I cannot even understand.

I just wish I could get it myself.

Independence Day

Torch asks me to report that she had her third treatment with Avastin yesterday.

She is still struggling with fatigue, lack of coordination, and speech difficulties, perhaps related to the mood-stabilizing drugs but the cause isn't clear. In two weeks we return to Dr. Smile and another MRI that may provide some answers.

Having the Blues

Torch has asked me to post tonight. She feels she is far behind on maintaining this blog.

The good news is that the tension, anxiety, and involuntary fidgeting the steroids had brought on have subsided now that she is taking two mood stabilizing drugs. What a relief, and what a joy to be sleeping again!

The bad news is that her body is again betraying her. She is falling more, having trouble putting words together, and sleeping at every opportunity. And she is enveloped in sadness and rage.

She will be working with her small army of doctors to get the bad symptoms under control and become more like herself. In the near future we are counting on the Avastin to free her from both the steroids and the need for other meds to help with the steroids.

She hasn't quit fighting. On Saturday we walked with our friend to a local restaurant for the first time in months, a grueling trek for her. Last night we went to Blues Alley for a CD release party - not her fault that the show was a disappointment, especially after our last outing to Step Afrika was such a success!

Stay tuned.