February 2011

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Taken at a very hip coffee shop near Carolyn and Tommy's house in Portland.

One of the things I adore about my new iPhone is that I can post to Fourseeds from just about anywhere. So today I’m doing something I’ve never done before: blogging from the chemo chair.

I should point out that my friends, family, and I have begun to refer to chemo as “getting juiced” since every Monday is now chemo day, or Juiceday.

This Juiceday, I’m thinking about a phrase Byron Katie uses a lot: Love what is. (By the way, I love “Byron” as a first name, and did you notice the Oscar winner last night who gave a shout-out to his daughter “Bronte”? Awesome.)

Byron Katie’s an inspiring writer and speaker whom my friend Jill told me about over lattes recently. Katie uses the Socratic method (asking questions) to awaken people to the concrete things they love about who they are and what life has handed them, no matter how dire their situation seems.

She doesn’t talk people into being happy in spite of the difficulty in their lives. Rather, she leads them to discover what they love about the life that pain and difficulty has brought them.

I think embracing Katie’s notion of “loving what is” requires a belief in a bigger picture, a broad plan that we all somehow fit into, a context where natural disasters, disease, and mean people make sense.

I personally agree that we’re all part of a bigger plan that we can’t quite grasp. Believing this gives me some relief, and it supports my conviction that my role is to love: to love my son and husband, to love my family, to treat my friendships with reverence, to take the best care of myself that I can, and to live with the biggest heart possible. I can say that my role in this life felt much more complicated before November of 2008 (when I was diagnosed), and that I lived with a lot more stress, many more feelings of lack, and wanting always just a little more of everything, and from everyone.

I do love what is. And if it takes weekly Juicedays to experience that love, so be it.

Hugs,

Jennifer

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We were so wishing for snow today. The weathermen had our hopes soaring, and bone-chilling temperatures had me dreaming of waking up to a winter wonderland. Alas, the sun is shining and the briefly frosted-over grass has already thawed. Ah, California.

It’s been a busy time since we arrived home from Portland on Monday night. Little J’s school was closed for “ski week,” so Tuesday he spent the day with his friend JStew while mama got chemo. It was a snap for me. A short 2.5 hours in the chair, and I was done. I barely had time to get through all my magazines.

Wednesday, I was a bundle of energy thanks to Decadron, the steroid they give me with the chemo. The stuff makes for a red-faced and talkative Jenn the day after getting juiced.

Thursday was tough. It seems like two days after chemo is going to be my one pooped out day of the week. But that’s doable.

Yesterday was full of treats because Linda traveled up from the South Bay with her little ‘uns for a play day. The kids worked on out-sillying each other while Linda and I caught up and wished we lived closer.

Last night I went out with two new friends, moms at Little J’s school. Dinner and drinks at Finn’s with these two sweet ladies reminded me of what puts the sugar in Sugartown.

No snow, but lots of sugar. Lots of sweetness.

Hugs,

Jennifer

Penguin photo credit

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Snow Day



Today = fantastic: Little J’s first snow-play and sled adventure (with a dog!) took place.

We’re staying at Carolyn and Tommy’s beautiful abode in Portland for the weekend, and they (and their pooch, Lucca) treated us to an exhaustingly fun afternoon on Mount Hood.

Luckily for us, Tommy had enough gear to protect a bunch of Californians from the elements. Though I’d donned my warmest cords, wool sweater, jacket, and boots, Tommy took one look at me and started handing me more layers: rain pants, down jacket, and Wellingtons.

Little J had so many layers that I thought he’d have trouble moving. Not so much. The kid took to saucering and sledding like nobody’s business.

We ended up playing for a few hours. We all tried out the saucers and sleds. We all got tossed, spun, and dumped. We all will sleep very well tonight. After a big and hot well-deserved home-made meal.

It’s so good to see friends. To play hard like kids.


Only Love

I took this photo in Sevilla, Spain on Valentine's Day 1996.

Last Valentine’s Day, I posted that this day is Dennis’s and my first-date-iversary.

This morning, the three of us woke up to sweet surprises thanks to Hallmark, Little J’s unending enthusiasm for candy-related holidays, and the one thing that keeps this family moving forward no matter what: Love.

Last week, Dennis and I talked about how this would be a special Valentine’s Day. Instead of awkwardly wooing each other over gimlets in North Beach, we’d hold hands and make each other laugh while we embarked on our next cancer-venture: the Morab-003 trial. Chemo on Valentine’s Day might seem cruel to some, but for us it’s perfect. Love is our secret power. So today is an auspicious day to get this leg of the journey going.

But perhaps it is not meant to be.

We got a call this morning from the trial coordinator saying my white cells are too low to qualify for the trial. They’re supposed to be 1.5. They are 1.25. So I headed out into the rain to get a STAT blood test at Sugartown Community. And as I type, we are waiting to find out if my neutraphils have risen another .25 since Friday.

Can a girl get a break? I mean, PLEASE. Enough already. This trial looks so promising, and I am going to admit to you right now that I will be heart broken (broken) if this doesn’t work out for me.

While we’re waiting for the phone to ring, let me share some photos with you. I took these in Morocco in the Spring of 1995. I had been living in Spain for several months and needed my passport stamped because it was illegal to live in Europe without a visa that long. And back then, they were more strict about it. I also went because I’d been in love with the idea of visiting Fez ever since I’d read Anais Nin’s writings about the ancient walled city:

Fez. I have just left the balcony where I stood listening to the evening prayer rising over the city. Overwhelmed by all I have seen.

Mystery and labyrinth. Complex streets. Anonymous walls. Secrecy of the houses without windows on the streets.

Fez is the image of my inner self. This explains its fascination for me. Wearing a veil. Full and inexhaustible. Labyrinthine. So rich and variable I myself get lost.

Fez is a drug. It enmeshes you.

The layers of the city of Fez are like the layers and secrecies inside of me. One needs a guide. Traveling, I add everything I see to myself. I am not merely a spectator. It is not merely observation. It is experience. It is expansion. It is forgetting the Self and discovering the self of affinities, the infinite, limitless worlds within the self.

Here is a photo I took of the entrance to the old Medina of Fez or, فاس البالي:

And once inside, I took a photo with a different camera, one with black and white film:

And this photo is my most cherished of all non-family photos, of all travels. Ever.

This morning, I took the picture out of my jewelry box, where I keep my wedding hair clip and treasured string of perfectly matched pearls, a college graduation gift from my parents. I need to look at and share this photo with you this morning.

Who knows how it came to be that this little girl was standing alone, in the darkness, in this tiny alley, in a walled and roofed city that one could get lost in. Forever. Maybe, even at her age, she knew her way around the twisting, turning, walled-in cobbled pathways of the old Medina better than most.

You can’t see it, but she is smiling at me. I remember sneaking this picture because I’d been told Moroccans find it offensive to have their photo taken. But I had taken out my camera and aimed it down this corridor before I knew anyone was even there. The flash revealed her. And in the quickly fading burst of light, I saw her smile.

I’ve treasured this photo for fifteen years. Not because of its quality. Because of its mystery. Because of the confidence, bravery, and beauty of this little girl, standing in a dark alley, alone with one tiny light bulb. She’s almost like a little ghost, or an angel.

I feel that Anais Nin would have loved to have seen her there. Or maybe she saw her, too. Maybe she’s the inner self that Nin finds in the city, in her travels. Anyway, she’s my symbol of bravery and hope right now. And now I’ve got to go.  A tiny doorway just opened on my own twisty path. The coordinator just called, and my white cells are 1.7. Morab-003 is on.

Hugs and Happy Valentine’s Day.

Jennifer

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100 Days

Little J has been a Kindergartener for 100 days, and at our neighborhood Sugartown school, they didn’t hold back the celebration. Here he is in school sweatshirt, crown, Fruit Loops (100 pieces) necklace. Note he is also clutching 100 Days pencil as though it were made of gold:

As if this were not exciting enough, the same week, he received the “Citizen of the Month” award at school for showing the monthly featured characteristic: acceptance. Indeed.

And, as you can see by the uniform above, he’s now practicing Taekwondo.

Words do not exist to describe the love we have for this boy.

Hugs and happy Friday,

Jennifer

Virgil

Since we last spoke, we’ve decided to try another trial: Morab-003. I’ll be starting on low doses of Taxol, once per week. In addition, I’ll have 2/3 chance of getting a bio-agent called farletuzumab (farlaTOOzamab). It’s aPhase III trial, lots of ladies with the OC who are getting the combo are doing very well, and it’s happening here in Marin. Lovely. That’s a tri-fecta of joy, as far as chemo goes.

Unfortunately, we have to wait until February 14th to start treatment because they have to make sure my last trial substance is “washed out” of me before starting this trial. The waiting is hard, but both Docs G and C have assured us that it is safe to wait.

Tick. Tock.

In the mean time, we are enjoying the sunshine. Sorry East Coasters, the weather is currently shamelessly Californian in its brazen gorgeousness. Ahhhh.

On a side note, it wasn’t as hard as I thought it was going to be to tell Virgil that we will be starting treatment again. Those of you who know Virgil know that, while he loves any extra amount of snuggle-time that chemo brings, he doesn’t like to see mama unwell. Here’s how he took it:

"What's that you said, Mama J?"

"Oh. I'm so sorry to hear it. I don't know what to say."

"Listen. Everything's going to be okay. Whatever I can do. Snuggles, purring, whatever."

Hugs,

Jennifer

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