Risking Significance

Status change

noreply@blogger.com (Bill) — Mon, 15 Mar 2010 02:03:00 +0000

Because of a Blogger policy change taking effect May 1, 2010, this blog and "Inside Her Head" will both be frozen effective immediately. They will remain at the same Web addresses but the posting and commenting functions, which depend on Blogger, will no longer work. These functions have been unused for at least a year and a half anyway.

RSVP

noreply@blogger.com (Bill) — Sat, 06 Sep 2008 00:18:00 +0000

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

noreply@blogger.com (Bill) — Sun, 24 Aug 2008 13:31:00 +0000

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

noreply@blogger.com (Bill) — Sat, 23 Aug 2008 17:32:00 +0000

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

noreply@blogger.com (Bill) — Fri, 25 Jul 2008 16:38:00 +0000

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!

noreply@blogger.com (Bill) — Sun, 20 Jul 2008 13:19:00 +0000

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

noreply@blogger.com (Bill) — Wed, 16 Jul 2008 22:49:00 +0000

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

noreply@blogger.com (Bill) — Fri, 11 Jul 2008 20:22:00 +0000

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

noreply@blogger.com (Torch) — Sun, 06 Jul 2008 22:20:00 +0000

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

noreply@blogger.com (Bill) — Fri, 04 Jul 2008 20:06:00 +0000

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

noreply@blogger.com (Bill) — Wed, 02 Jul 2008 03:01:00 +0000

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.

And Lithium Too!

noreply@blogger.com (Torch) — Fri, 27 Jun 2008 03:36:00 +0000

Why not? Stabilize me, someone!

Ongoing Updates

noreply@blogger.com (Torch) — Wed, 25 Jun 2008 15:07:00 +0000

I am trying to keep up with the latest bits of news. At the very least I might have everything in some order!

Last Friday Mr. Husband and I set out for Hospital J first thing in the morning. I felt like poop, and had managed to be so under the weather that I missed my weekly check-in, and totally forgot to check for my mucous and urinary values at my doctor. As a result, it was more than four hours later when I finally ran my chemo bags. While I got to lie down and doze, poor Mr. Husband had to hunch up next to my bed while his flu symptoms began. We finally got some food after we'd had many hours (six? seven?) of starvation. If nothing else, we were saved by Friendly's. But it was a harsh trip.

I spent the last few days starting to get better, and Mr. Husband is recovering. I have been reading, rather than just staring into space, and the spouse is actually upright and active. On the down side, I am feeling a number of worsening symptoms, including chattering teeth and shaking, extreme alertness, thick mucus, buzziness, and sudden fits of anger and fear. While I am improved in balance, I still cannot negotiate certain aspects of spatiality. I have forgotten, for example, how to stand on one foot at a time, and find myself stuck on the stairs.

All of this, I think, is going to add another medication. I hate the idea of adding still more drugs to my list, but I cannot imagine being somewhat functional without them. Klonopin is sold as Clonazepam and I have hopes.

So be it.

Packing

noreply@blogger.com (Torch) — Sun, 22 Jun 2008 21:30:00 +0000

I have been thinking about one strangely bizarre job I had when I was just eighteen. For some reason I demanded that I wanted a "real" job. I had worked at a number of baby-sitting and office jobs, and insisted that I could use my typing skills. So I interviewed for, and received, a temporary office job for the summer. I think I called it secretarial skills and was paid a whole $5 an hour.

In retrospect, I cannot imagine why in the world I wanted this position, but I did. I felt very important as I showed up every morning at the office. There was a huge building on the first floor full of packing materials; I had nothing to do with that. The second floor, however, contained the salespeople, all of whom put in charges for their costs. My office had a 20-line switchboard. With the exception of the boss (whose name I think was Rocco) all the calls came into the switchboard. Which I ran.

The way it worked out, I learned from the salespeople, was that certain types of packing were relevant. For example, if you had prepared flats of meat - something "kinda bloody" - you would want to leave extra space for ground chuck, but if the meat was steak, it was less likely to require extra space. And in some cases, well, you'd want to be aware of more juice in the mix. It just made sense that way. Logically.

Of course, all we had on site were the styrofoam trays. The actual meat never came down to where it was packed, but that's how they talked about it. They didn't see it in their mind's eye.

I never had that kind of work after that summer; I was in a number of shows and an equally large number of random job-ins, and stayed connected to the theater. At the end of the summer I took my pay stub and never went back. But I never forgot about the imaginary meat, either.

Oh My

noreply@blogger.com (Torch) — Fri, 20 Jun 2008 02:33:00 +0000

Oh my oh my. And so forth. Work is over. Over, and over, and done, and there it is and the twin engines of relief and responsibility are throbbing, and here comes the parachute finally finally and I will coast into the quiet.
Yeah.

Excellent Birds

noreply@blogger.com (Torch) — Sun, 15 Jun 2008 22:00:00 +0000

These past few days have held interesting tensions. On one hand, I've experienced tremendous relief from the symptoms incurred by the jarring of my immune system. It is a joy to be free from the worst of it, and the strange birds (credit to Peter Gabriel and Laurie Anderson) give me all kinds of release. On the other hand, I cannot stop chewing on the insides of my cheeks, and grinding my teeth, and I am WIDE AWAKE, and my noggin is swollen. The cold that developed rapidly last week added a confusing layer of cumulus to my head as well.

Until it all burned off. Get yourself to StepAfrika. Seriously. I don't even mind being in the wheelchair.

Less And Less

noreply@blogger.com (Torch) — Thu, 12 Jun 2008 02:17:00 +0000

As I rapidly ramp up - or should I say down? - to leave my job, I am acutely aware of my pride in my staff, the changes they need and are struggling to enact. This year has seen an utter reversal. It ain't easy. But the people who have signed on, even when it was hard, have renewed their commitments to the work we do. My gratitude is unstinting.

At the same time, I am withdrawing from the work. I am out of the loop; I know less and less. And in a weird way, that is a source of pride. It is unnerving, but it is no longer what I need to be good at. I see myself learning about how I can get better, reaching toward my muscles, finding ways to exercise my stiff body, moving. Where will I locate myself? How will I process the treatments? What will come to me? What will happen to this life?

Sometime next week this will be the end of an era for me. It is time.

Back Into The Cosmos

noreply@blogger.com (Torch) — Fri, 06 Jun 2008 21:48:00 +0000

After wheelchairs, staggers, and a voyage to a terrifying new world, I have flown back into the cosmos. I am now taking steroids. The symptoms Mr. Husband described in Update on Torch are slowly receding.

It is physically safer here, but not uncomplicated. I once wrote about

confusion and general inside-outness. The medications alone have given me reason to feel loosely confoosely on my tippy tippy toesies, and the neural inconsistencies are quite an experience...

and I retain, all these years later, an acute memory of a psychotic event brought on by steroids. However, with a little bit of luck I'll have a purchase on the world within the next six months.

The reason I am so optimistic is the appearance in my life, starting today, of a new drug called Avastin. It will likely, they tell me, free me from dependence on steroids by shrinking the edema. It will fight the growth of tumors in my brain. Its side effects are few and have none of the horrors of steroidal side effects.

When we met with Dr. Smile and his nurse on the way to the Cape, they told us that this drug had been approved within the last two months by the insurance company. I've scrambled back from the brink again, thanks to "all manner of unforeseen incidents and meetings and material assistance, which no one could have dreamed would have come his way" (Goethe Faust, 1835 John Anster translation). Oh glory be!

I will receive Avastin intravenously at Hospital J every two weeks until we find out more. They tell me that it has a 60% success rate. This is nothing to sneeze at. I am not sneezing.

The Exquisite Corpse

noreply@blogger.com (Torch) — Thu, 29 May 2008 11:59:00 +0000

(http://en.wikipedia.org/wiki/Exquisite_corpse)

Chaos breaks out. (Escorted by generous impulses.)
Wow! May you fulfill all your wishes!
If you were not there to encourage me,
it wouldn’t mean what it does to me.
And I love sailing this ship with you -
momentous, this birthday, two score!
I’ve known you since you were a kid,
and the world is a better place because you’re in it.
We met on Upland Road,
with apologies to Mollie Katzen and Sesame Street.
When we went for breakfast afterwards,
I would like to use the Way-Back Machine.
For example, Terror Tales III is supposed to be set in Texas
but it was ironic. OPPS!
But all I really want for Christmas is an aide-de-camp;
you’re with me everyday.
Espresso coffee has less caffeine than regular coffee,
what wonderful things you know!
A woman’s choice is never wrong,
closer to the higher source than most of us will ever achieve.
Would you wish to be without them?
We were just kids running through a field,
with me a few steps behind, at your back, always.
It starts when you say We and know who you mean.
Who made the world?
We cherish our old friendship and raise her up if she falls,
leaning in toward love;
I remember watching, as she and eventually all
the grandchildren, learned to tread water.
You are, you know.
We brought homemade signs and water bottles,
I probably would’ve given it all up years ago
but I don’t know if you would’ve let me.
Don’t waste time, and most importantly find the people who live,
who get it and hold them close.
It is work and love that makes a life blessed.
Courageous and fierce and singing and
“Moses supposes his toeses are roses.”
I resist meanness, admire the frost on the least twigs of the branches.
This is a story about a kitten all by himself
and then she to came with live with us!
We talked about you, about me, what has life brought us,
not always the best things.
Long hair, no hair, infant, teen, woman,
shoes, dolls, plays, scraped knees, pedicured toes;
I am worried about poppy seed muffin bits,
but you are still an easy morning’s ride.
May your days be carefree as the baby sand hill
cranes that you watched along the lakefront.
She was full of life, full of love,
and glistening with joy - it’s simply wonderful to have known you.
So happy birthday!!
Eleven for the age we pierced my ears;
let’s start with the couch incident.
Life lessons learned about you.
Thank you for loving the truth even
more than chocolate and shoes,
Allowing spoons to cool then carefully remove tiny hats,
And with your vivacious presence and
beautiful bald head you are living the best story of all.
Remind me of the jar of sand and salt you took with you to Iowa.
I admire how much you give to what you know to be right.
You teach the rest of us how to live.
As Pooh says, “Many happy returns of the day”
and loves you for your ability to feel thankful –
A gift as rare these days as it is exquisite.
We believe in you.
It appears you were not born yesterday.
It was tres fun and ah mees it.
When I say that the moment I met you
I felt we’d known each other our whole lives,
You became my sister.
How you showed up in an excellent hat, all alive.
Grandly, she was and she is “and always will be.”
The music soars and lifts you away from the ordinary.

Update on Torch

noreply@blogger.com (Bill) — Sun, 25 May 2008 01:42:00 +0000

Mr. Husband is posting this, with permission, for reasons that will be immediately apparent...

This is a medical update so you know what's going on and so that the family and friends we see at the memorial service for Torch's grandmother next weekend know what to expect, at least those of you who are following this blog.

The problems that Torch reported in "Weird" are getting more severe. Walking is very challenging and hazardous, and we plan to rent a wheelchair Tuesday. Her right arm and leg are foreign to her and only retain some sensation. Typing is almost impossible, even left-handed, and speech is chancy because she loses her train of thought, can't find words quickly, and is easily rattled and confused.

We have mounted a counterattack. We voiced our worries to Dr. Smile, her oncologist; to her new neurologist; and of course Dr. Fish, and all three (well, in Smile's case it's his nurse who is doing everything so far) have leaped into action. She had an MRI today, four weeks ahead of schedule, at Hospital W close to home, and all three doctors have requested the report and images. She will see two or maybe all three doctors before we leave for the Cape Thursday afternoon.

Smile's nurse proposed the very comforting theory that Torch's symptoms are the result of swelling from last October's radiation, not direct damage from the radiation or new tumor growth. She prescribed medicine to deal with the presumed swelling; Torch is taking it reluctantly because her current problems are harder on her than the possible side effects of the meds.

Torch's next post is in progress but it's a very slow process. She sends her apologies for its taking so long.

The Gift

noreply@blogger.com (Torch) — Sat, 10 May 2008 21:06:00 +0000

My friends and family, led by 614, Mr. Husband, Froggie, Spock's Brain, and AFH, did an amazing thing for my birthday. They created a Book with pages sent in by my near and dear. (And my far and dear.)

There were pages sent in by schoolmates and colleagues, by neighbors and (like Rabbit's) Friends and Relations. There were photographs, collages, recipes, memories, cartoons, doggerel, poems, haiku, and more. And so many people were represented!

I look at this Book several times a day, often crying or laughing over it, and today I decided to write back. Soon.

The Chimera

My Grandmother's Flowers

noreply@blogger.com (Torch) — Sun, 04 May 2008 22:22:00 +0000

Late Thursday night my grandmother died. She had been failing tiny bit by tiny bit for five years, approximately. At the very end she was dehydrated and her kidneys were failing, but she was not in pain. Her three daughters were there when she died. She was a force to be reckoned with, my grandmother. She was universally loved, sweetly stubborn, and provided our family's moral compass.

After I graduated from college I went through a phase where I would wake up very early in the morning, often before dawn, and be convinced that I was the only person in the world. When this happened, I called my grandmother. We didn't talk about existential angst. She told me what flowers were blooming in the garden, and what guests were arriving for lunch. She included me, and those terrifying mornings became easier.

One summer evening when we were at her house, my mother and I stayed up late playing a final game of Scrabble. We were surprised by the appearance of a large white bat running across the lawn, and I think both of us gasped. The vision resolved itself into my grandmother in her size 4 nightdress. She had only just remembered to move her sprinklers. She was unembarrassed when we mentioned it the next morning. The flowers needed watering.

Weird

noreply@blogger.com (Torch) — Fri, 02 May 2008 00:29:00 +0000

God, this is weird. There's no way I can describe how strange it is to see my words appear on the screen without typing them. Mr. Husband is sitting next to me being my amanuensis. (Look it up.) I'm thinking this has got to be the most awkward way to express myself, but I have to believe there is something I will learn from it.

In the last two months I have become aware of certain deficits in my neurological makeup. My body has become progressively weaker on the right side. I limp emphatically and my balance and coordination are shot. My right hand and foot are weak and uncoordinated. As of this week I can neither type nor write comfortably. Although these symptoms are erratic, they are worse when I am stressed. Fortunately, because of the way the body is put together, I am only experiencing these problems from the neck down. There is no way of knowing yet if they are at their full extent or if they will develop further.

On Monday I am going to see a new, fancy neurologist. I'm hoping he will have some knowledge, some generous impulse toward me. Before Monday I need to corral the results of the various tests I've had done. I tried all week to get through to my doctors and got no response. Today, in tears of frustration and fear, I asked Fish what to do. An hour later he'd charmed the staff at Hospital F and explained to me how to charm the staff at Hospital J. I resented it enormously and it worked. I'm so grateful. And pissed.

And in other news, I am quitting my job. Long story. I will tell it next time. In the meantime I am convinced that this is the best thing I can do for myself and for my employer.

Did I mention that this is weird?

Back!

noreply@blogger.com (Torch) — Sun, 27 Apr 2008 19:21:00 +0000

(and I mean this in the best "I have returned" way)

As usual, I did a terrible job communicating that I was going away for a while - for those of you who were concerned, I apologize. Next time I will say "I AM NOT GOING TO BE WRITING ON THIS HERE BLOG FOR THE TIME BEING BUT I AM OKAY-DOKEY."

There are many things to catch up on, and it will take me some time, but I here's a partial list of topics that will be updated.

Why this will take me some time. The radiation has damaged my brain, or so it seems. I am making an appointment with a neurologist who may be able to help me.

The final result of this treatment. Interestingly, the definition of "success" has morphed from reversing the growth of the tumor to merely keeping it in situ. I do realize that is Something. But it is not Everything.

My future. Much is changing, especially in relation to my job.

There are lots of other things, of course - far too many to list! Thank you, and here we go again...

Vexed

noreply@blogger.com (Torch) — Fri, 29 Feb 2008 01:30:00 +0000

I went for more scans today and am a bit frustrated to report that there is still no change in my tumor status. We looked at the "films" (it is all digital now, so there aren't any real films) with Dr. Smile, my neuro-oncologist, and with the exception of an itty-bitty possible blip, there is no change. This is not a disaster, since there are still two months until the end of the window in which improvement may appear, but it is a bit, shall we say, vexing.

I was hoping to see some change by now, but (as I have mentioned before) my expectations are somewhat skewed by my first experience with ye olde radiation. What gets me is that I will not get another shot at it. Of course, I thought that last time, and I did get another chance, so who knows? I guess I should say that I don't imagine I'll have another shot at this treatment. But that's also new - a crisis of imagination - and it makes me feel, even without any evidence, doomed.

Anyway, I scheduled another scan for the third week of April. Until then, I will try to put it out of my mind; I have plenty to do, and obsessing doesn't help. Deep breath, move on.