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.

Oh My

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.

The Exquisite Corpse

(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.

The Gift

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

Sunshine

At work, we've had several letters like the one I copied here (in my last post) and it looks like the funding program will be renewed. Yay! Merle seems to be tolerating his "sub-q" with relative equanimity, for a cat of very little brain, and we only have to do it once a week for the moment. My eyes healed perfectly, and I finished with the post-operative drops today, though they suggest you use them for another month to 6 months. And I am not working this weekend, which has happened exactly never since we started the program!

(My only complaint is that I keep pawing at my face to "take off" the glasses I'm not wearing. So far I've only scratched myself once...)

Letters Like This Make It Hard To Sulk

This arrived for me (read, my department) today.

I am writing you because of what this foundation has done for me. How do you thank people or a foundation for helping give hope to having a better life? Thanks just does not seem to be enough. I greatly believe in the fact that it is my decision to have done what I did. My life is essentially saved, I can now get through school, get a job, and have a sufficient income when I am older.

I am so grateful that there was an organization like this or I never would have been able to make the trip and afford having the procedure done. This gives women around the nation hope that a bright future is possible! Someday I hope to repay the huge favor this foundation has done for me. I thank god everyday for having wonderful people in this world, which set up a great service such as yours to help women around the nation.

I can’t thank you enough, and everyone who works there that I was in contact with was very nice and understanding. Thank you from the bottom of my heart, you saved my life and I am grateful everyday!

Keep going strong and god bless to all of you, and keep this amazing foundation running! You are a miracle and I will always remember what you people have done for me in my life!

Make It So

Whew! I keep thinking that it will slow down a little and I will be able to post something substantive here and I am WRONG WRONG WRONG. I have been working long hours and there is always more to do. We are putting out fires and running to catch up with ourselves. We did zero publicity last week, but we spent more money in the first three days than than we did in the entire PREVIOUS YEAR. Do you see what I mean?

We don't have to niggle and bargain anymore. Not that we have everything or everyone covered - but in a majority of states, for a majority of women, we can help. A choice has meaning. Both they and we are in a bit of a state of shock about it. The savviest callers question us intensely, making sure we are not pulling their proverbial legs, testing the limits of these new truths.

Yesterday I spoke to a young mother of two. She was unemployed and her babies were three years old and six months old. I told her that under our guidelines, she qualified for us to pay for the majority of her abortion. She burst into tears and told me we were saving her life. We talked about how the pledge worked, how she would bring the money she'd been saving to the clinic and we would pay the rest. Before we hung up, she asked me to tell her one more time that she didn't have to pay us back. "I just can't believe it, can you say it again for me?"

So I told her again. And I told her that this is the way it should always be - that there are precious few things we can call our own in this life, but our bodies should be sacrosanct. When I think about that, that any person has the right to make decisions about her body, it seems to me that this has got to be Meaningful in a more cosmic sense.

For one thing, reproductive choice grew teeth today - a woman can choose to have an abortion and by golly, she can actually have one, unlike yesterday. Yesterday, a woman could choose to have an abortion, but unless she had money and a babysitter and could miss work and there was an abortion provider near her, her "choice" was meaningless. Living a life where your choices are voided the moment you utter them is (at best) demeaning. At worst it is profoundly dispiriting.

But today is different. When your words are heard, when you say "make it so!" and somebody does, suddenly you have power. You might even begin to think that you have rights, and demand them. You might realize that you deserve more than you are getting. You might claim what is rightfully yours. You might grab hold of whatever it is that is belittling you and shake it until it slinks, shamefaced, to the corner. I feel like a preacher sometimes - take that, Henry Hyde! We will not be moved!

On top of this, I think WE are also shocked by the sudden agency we can dispense. I didn't realize that in many cases, I was not counseling women about their reproductive choices, but empathizing with them about the fact that they didn't actually have any. Now I can give them actual options, and that feels amazing. Several members of my staff have double-checked answers with me that were clearly correct; we, too, are struggling to believe this wondrous thing.

(Don't worry about us too much, though. We'll adjust!)

Figuratively Feverish

Some of the thoughts that passed through my figuratively feverish mind yesterday morning between when I woke up and when I stopped turning and tossing and just got up:

• People collect all sorts of things, even nutshells.
• There is a big crack in the wall on the staircase and one in the front room. I wonder if that means that the house is inherently unstable and could come crashing down around us at any time? Was buying it a mistake? If we wanted to sell, could we? Not bloody likely, I guess, since it's about to crash down around us. Damn.
• Our cat is amazingly pretty and amazingly stupid. Are the two related?
• I don't think I will ever get sick of dark chocolate, but it isn't good in salads, and I like salads too.
• If I started wearing heels on a regular basis, I might learn to walk in the really high ones. On the other hand, why? They screw up your feet.
• If you listen hard, you can actually hear the heat cycling through our radiator vents. My stomach is louder, though.
• I'm going to be allocating a lot of money. What if this money that I am going to be allocating somehow makes me famous? I don't want to be famous! I wonder if I should quit my job.
• Whose nose do I have? It doesn't look like anyone else's in my family. I wonder if I had rhinoplasty before I was old enough to remember it. Maybe it was hideous when I was born and they don't want me to know!
• Wow, I am so tired that I am WIDE AWAKE. I wonder if I drank some coffee, would that put me to sleep?

So last night? Last night, I thanked the powers that be for Ambien.

Blooms

These are the flowers that my mother sent to congratulate me for getting through radiation. Pretty!

(I would show you the brownies that my friend in the Heartland sent, but I ate them. My colleagues pitched in to help with that project!)

Joys Of Treatment

I have now been having radiation treatment every weekday since August 30. My last scheduled day is October 12, so I am in the home stretch. Every day that I go in next week, it will be the last day of its sort that I will have radiation treatment - that is to say, when I have treatment on Monday it will be the last Monday that I will ever have radiation treatment, and Tuesday will be the last Tuesday. Ever.

Unless, of course, something changes. When I completed my first course of radiation in 1989, the assumption was that I would never have it again, and look what happened. (No complaint, you understand, just observation.) Anne Morrow Lindbergh said, “only in growth, reform, and change, paradoxically enough, is true security to be found.” So I will await the other end of the paradox, and hope it does not come. (More paradoxes. Paradoxi?) At any rate, I will not know anything new medically until the end of December, although my level of exhaustion should abate somewhat in the next few weeks.

One of the joys of this treatment (the joys of cancer treatment are few and far between, but they exist) has been the small cadre of drivers that took me to the hospital every day. The group is all female, except for Mr. Husband, because I am more comfortable with women where my body is involved. For the last several weeks they have taken time off from their regular schedules and battled lunch-hour traffic to get me to my appointment.

I was worried about this part of the arrangements, I have to confess. Who wants to take the middle of their day to drive downtown and then to the 'burbs and back again, especially when it is never clear (due to traffic, radiation machine backup, or acts of nature) when the return will be? Who would voluntarily shoulder this when we all have more than enough already going on in our lives? When we have appointments and volunteer work and children and dogs and conferences and reviews and dental work?

But it has been a pleasure. From Sweet Sister C to Sarah Connor to my cousin M to a former colleague who said it would be a gift to her (to HER!) to be involved in the process, I have had the best of transportational care. And I got to see some people on a weekly basis whom I have gotten out of the habit of seeing that often, and others whom I have never seen that often. Even taking part of the day off with Mr. Husband to run to treatment and back felt a little luxurious, because we would grab lunch together.

And that is why, although I am more than happy to finish this course of treatment, and am more than ready to get those two or three or more hours of my work day back, I will - paradoxically - miss it.

Hair

My hair is falling out. Not all of it, not most of it, so far, and I was prepared for it, but it is so evocative.

This time, though, I am in a much better place. I am a Grown-Up, for one thing, which is huge. I am not trying to compress 40-50 years into a few months. I celebrate my birthday every year as an enormous gift; thank you, Cosmic Muffin, for giving me another year. Watch me do it again! And then I do.

When I look at the photograph above I feel sad for the woman who did not know she was going to survive. She seems heavyhearted. I am relieved that, if nothing else, I am no longer haunted by presages of my own death.

(And also, I told my hairdresser to do whatever he wanted, since it might fall out soon, so he gave me a sort-of layered bob thing, and MY HAIR HAS NEVER LOOKED BETTER.)

Thrombocytopenia*

My platelet count is low. I have petechiae all over me. And bruises galore. But what I really resent about this time is that this is ALL I have gotten from the chemotherapy - no benefits, just side effects.

The thrombocytopenia has happened before. The first time, I was 16 and had mononucleosis, and my doctor called me at home personally, so I knew the news couldn't be good. I thought she'd let me wait until my mom got home before leaving for the hospital, but she didn't. I guess they thought that maybe my bone marrow wasn't churning them - platelets - out at all, because I had the second bone marrow extraction of my young life that day. I was crying (those needles really hurt!) and rubbed my eye. For the rest of the week I looked like someone had clocked me. They wouldn't even let me get out of bed to use the bathroom unless someone walked with me.

The second time was right after I had radiation in 1989, and I can't remember how the platelets were revived, but it wasn't particularly traumatic.

The third time was about ten minutes before Mr. Husband and I left for vacation in 2003, having weathered the brain surgery in May and the beginning of chemo in August. My doctor called and told me that I needed to come into the hospital for a transfusion. Those of you who remember this story know what happened next: I started crying inconsolably, my sister Froggie (who was living in DC at the time and had come to see us off) tried to comfort me, and Mr. Husband got on the internet. Twenty minutes later he'd made reservations for us at an inn near the hospital. Leaving the capable Froggie in charge of the cat, we got in the car and drove off.

I thought I understood serendipity before that trip, but I didn't. First of all, the Wayside Inn turned out to be a charming place with amazing food. And chocolate kisses in strategic places throughout the house! Second, while wandering around the town we found a store that made custom stained glass panels, which we'd been talking about ever since buying our house. The beautiful transom over our front door? We designed it on that trip, and Len from Great Panes drove to our house to install it. If we had taken the vacation we planned, it would have been wonderful - but these things would never have happened.

We've gone back the Inn several times since then - we've celebrated birthdays and anniversaries there, and for me it represents (to coin a phrase) the ability to make lemonade when life hands you lemons. (Which is a skill I am trying to perfect, if anyone is wondering.)

Now if I could learn to make my blood clot without platelets, I'd be all set.

*a.k.a., low platelet count

Movin' Right Along

In The Muppet Movie, Kermit-the-Frog (which is how I always think of him, Kermitthefrog) leaves the swamp to find his fortune in Hollywood. The film is full of bad jokes and worse puns, but has a poetic undercurrent of the bittersweet but unavoidable journey from tadpole to frog. Subsequent Muppet movies tried, but just didn't have the same cachet.

As Kermit-the-Frog bicycles from his birthplace, he is picked up by Fozzie, a stand-up comic. Fozzie is "a bear in his natural habitat - a Studebaker." They gradually encounter the Muppets who started it all, from Janice and Rowlf (who was the very first Muppet, and was made for Purina Dog Chow ads) to Big Bird. The Studebaker, after numerous misdirections, gets to Hollywood. They have their trials and tribulations, but at least they are not standing still.

I've been thinking about this movie because I spent last week preparing for, and last Saturday actualizing, a huge move. Okay, it wasn't that huge. My office moved five blocks. I think it would have been as traumatizing no matter where we moved, however. Because what shakes one up, it occurs to me, is that for at least a day (and for some of us much longer) we do not have a place.

It's as if you prepare and prepare to be shot out of a cannon. Even with the best cannon-shooters, even with the assurance of a soft landing and plenty of space and a yummy meal in the new kitchen (even though the kitchen table is still on a truck somewhere) it is unnerving to know that you are not in the old space, and not in the new. You are temporarily nowhere.

When I was a child I spent many of my summer days with my maternal grandparents. They lived near a small beach on a cove, and we swam there. (Isak Dinesen said "the cure for anything is salt water: sweat, tears or the sea." Well, almost anything.) I remember losing my footing on the seabed once or twice, and panicking. This was strange because I was an excellent, if inelegant, swimmer. But there was something about having a purchase on land and suddenly losing it that was terrifying. It is the same feeling I have had since I started putting things in boxes for this move.

I suppose we tell each other stories like that of The Muppet Movie - or Star Trek, or the Argo (see above) - to make sure that we remember that the ground is not gone, just momentarily unavailable. I try to keep in mind that the flip side of anxiety is excitement, and live there instead of biting my knuckles. (Which I actually did, for the first time in my life, last week. Didn't draw blood, I'm happy to say.)

Yet, I am glad that I am getting to live this so thoroughly. This is what living is all about. We wish we had more control, but we don't and we won't, and we need to practice that. We assuage our fears with laughter - hysterical laughter sometimes, but laughter nonetheless. I am grateful that I still find things hilarious much of the time. And in that light, as the Swedish Chef announces, "the flim is okee-dokee."

My Friend Biagio

After much agonizing, I turned on the comments today. It may be a mistake. And more interestingly, there are actually quite a few ways in which it could be a mistake, of which these are just the two extremes:

1. Nobody will write a comment. They will not care. I will feel lonely, unloved, unread, and unappreciated. I will have to drown my sorrows in really good chocolate from Biagio and retire from blogging.

2. Hundreds of people will write comments. They will be demanding. I will feel overwhelmed, pressured, resentful, and frightened. I will have to drown my sorrows in really good chocolate from Biagio and retire from blogging.

However, I have gotten enough nice reviews from people I do not even know - mostly, granted, through my mother, which makes them a bit suspect - that I am willing to take the chance. So love my work, or don't. But if you have something to say about it, I've decided to try listening. (I am so radical sometimes!)

And thank you for the chocolate. (Image shamelessly stolen off Biagio's website.)

Ol' Blue Eyes

One of the things that is nicest about this last diagnosis, if that makes any sense, is that everything is still in place from the previous time. I haven't had to educate anyone or start at the beginning looking for good people to take care of me - they are already there. My primary care provider is a PA who works out of a physician's office. I'm going to call him Esmond, which means grace and protection, out of deference to his dog and his personality. Esmond is "in" whatever I go through, right there with me.

The technician who took my blood every week when I was in treatment last time has become a friend. He's from southern state and you can hear the molasses in his words. Just in the last year or so, all the techs in the office have started wearing scrubs, and his are dark blue - thus the title of this post, which is my new nickname for him. I have to say, nobody ever wore scrubs to more advantage. His eyes just burn blue when he's wearing them. Ooh la la!

When I went to see Ol' Blue Eyes for my first blood draw after the new diagnosis, he offered to take my blood at my home if I didn't think I could make it to their office. He said he'd just bring the supplies he needed and make a house call. And it was this, after I'd been teetering on the edge of tears all afternoon, that made me break down. I think we both know that I can make it there weekly and that a house call will not be necessary. But here was a man with a skill that he knew I needed, and he was offering to make it easier for me to get it.

After my initial diagnosis in 1989, I signed out of the hospital AMA (Against Medical Advice) and forced my family to take me home. I was a mess and on some serious drugs, so I don't remember the toilet clogging up, but apparently it was unusable. My mother called our plumber, who was intimate with our old pipes. He and my mother had been through a great deal together, including the time that he dug up our entire yard at great expense, looking for a pipe that proved to be irrelevant to the project in progress. He was distracted, because his son was dying of cancer at the time. They ended up splitting the cost of the excavation.

After he had snaked the toilet that evening in 1989, he asked what was going on. My mother told him that I had just come home from the hospital. He said that he hoped it wasn't very bad news, and she told him that it was, indeed, very bad news. He said that he hoped it wasn't cancer, and she told him that it actually was cancer. (I cannot even imagine how hard this conversation must have been for her.) Apparently his eyes filled with tears, and he handed her the professional-grade plumber's snake. It was what was in his hands and what he knew how to do. "Here," he said, "you might need this."

What is devotion if not that spontaneous impulse to do what you do best for another person? Is there any better, any more heartfelt gift?

Status Quo

Thank you! Since I posted the first time I have been inundated by offers of everything from casseroles to pedicures. I couldn't ask for a better support community. What I didn't say before, and should have, is that I feel exactly as well physically as I did yesterday and the day before that. I am still planning to appear on the panel that I was planning to appear on this weekend in NYC, I am still going to run my department at work, and I will still learn everything I need to know about crime from Law & Order. And I will still lie abed while Bill is up being productive on Sunday mornings.

If this round lays me out, it won't be for at least a week or two.