Lil’ J

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Dennis’s flight took off from Shanghai about twenty minutes after the earthquake hit Japan, just as he was flying over, looking down at the shaking land mass and thinking to himself that it was strange that he was leaning to see the land below, to study the outline and form of Japan, as he’s normally not a window-looker-outer. He didn’t see the country moving. It was my first question, too.

Then he flew home, only slightly ahead of the tsunamis. With a one hundred mph tailwind, he landed one hour ahead of schedule, just as the first waves were hitting Hawaii and just as Little J crawled into my bed and asked, “When is Daddy getting home?”

I was bleary-eyed, having woken up with a start at 5:30 a.m., which is when the tsunami alarms had begun to blare in San Francisco. Unable to go back to sleep and sure that there was something wrong somewhere, I checked CNN, then lay in bed with a breaking heart knowing that the initial death toll of 52 would begin to swell as fast as the waves heading toward the Pacific coast line.

Several hours later, with Dennis safely landed, with Little J and Virgil cuddled up with me, and with my mom on hand with tea and sympathy, we began to thank our lucky stars and send extra love and strength across the ocean.

When Dennis arrived home, I could see in his weary eyes that, while he and his body had arrived, his spirit and energy were still winging their way toward home.

We regaled him with stories of the fun we had while he was away: the long-awaited trip to Chuck E. Cheese, the new shoes and toys, the snuggling and reading with Grandma.

Now that he was back, we would have a weekend of extra cuddling, of sending our thoughts of peace and fortitude to the brave people facing the rising waters and leaking radiation. If smiles and love could help them, Little J would be his own Red Cross.



Hugs,
Jennifer

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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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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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True Grit

When we told Little J the other night that I had to do more chemo, possibly forever, he looked at me like he was waiting for me to say it was a joke. He stared at me for a few more seconds, like a cowboy in a Western, but with chubby cheeks and a spoon full of mac-n-cheese mid-air.

He went right on eating, and Dennis and I explained that there was just a little cancer and I would have to do just a little chemo, but every week, and for a long time.

Dennis added quickly that Little J could still do Taekwondo, still play with his friends, still get walked to and from school by mom. We wanted him to know that his life would be the same without promising him that his life would be the same.

He just said, “OK,” and went on eating.

After a long silence, I added that I was sorry I told him just three months ago we were done with chemo. I really thought we were. He ignored me. I held back tears.

Dinner was long and awkward. We all talked about our days. The boys who chase the girls at school, the walks and tea with friends, the meetings and such.

About a half hour later, Little J curled up in my lap for his after-dinner hugs and said, “Apology accepted.”

I held him for a long time and have had him in my arms as much as possible since that moment.

I didn’t sleep very well that night and haven’t slept well since.

There is a bright side to what will be my new regimen. Regular small doses that my body can handle, hopefully without too many side effects will replace large, aggressive doses, the likes of which my body has still not full recovered from.

There are many down sides, obviously. The one that made me cry a lot yesterday is that I won’t be able to volunteer in the classrooms at Little J’s school anymore. I know I haven’t complained about specific losses through all of this, and I still assert that this disease has given me more than it has taken away.  But I am going to complain about this loss. I love sitting and reading with those kids so much. But if I caught strep throat from one of them, it could be curtains for me. And it’s just not worth the risk. If I catch something, let it be from Little J. That is worth the risk and largely unavoidable.

Another other upside to low-dose chemo once a week is that we can all get off of the rollercoaster we’ve been on: It’s here, I’m in remission, it’s back, I’m in treatment. I will be in treatment and that will be that.

In the mean time, there will be hugs and joy, and juicing, and surrounding myself with the most positive people possible. There will be time spent with Little J, Dennis and friends. And then there will be a cure so I can get back into those classrooms.

Hugs,

Jennifer

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There’s been no shortage of love fests this holiday season.

Grandma visited, and there was rollerskating on the driveway-just like it was 1976 in SoCal all over again.

Sugartown had its annual Christmas party. Almost all of the neighbors were in attendance, including the Sugartown gang, who tore through the house making spirits bright.

Technically this isn't a pic from the party, but they were all moving too fast for anyone to capture them on film, so I had to use this one from a few days before. Behold the costumes!

And Santa left quite a haul at our house, as we were nice this year. At least we tried to be. As often as we could be.

Little J and me engaged in a smiling contest. J's sweater, a gift from grandma, renders the boy impossible-not-to-cuddle.

Later that day, visits by uncles Mike and Tom were icing on the gingerbread house.

But Christmas with the family across the bridge was the most spectacular. Just ask little J, who was smothered with love from his talented and gorgeous cousins.

And for those of you who know Little J, you will recognize the following as nothing less than evidence of a true Christmas miracle:

You see, he does poop out. Only once a year, though.

We’ve had so many visits from friends and fun outings (bowling!), as well as quiet time by the fire and good ‘ole playing on the cul-de-sac. I want to capture all the fun and love in a snow globe and save it for later. Give it a good shake right before bed and dream it all over again, whenever I want to.

Hugs,

Jennifer

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Guess which cup it's under.

1. Kuhng Zu World. “If Santa can hear me, he’ll know what it is.”

2. A 3-D book that you can touch and feel the future.

3. A stuffy that can come to life when you push a button. Specifically, an iguana with real spikes on it.

4. Float boots that float you right up and over the house when you put them on. And float gloves so you can say, “Follow the gloves,” and the boots will float you where you move your hands.

For Princess T:

A ring that grows into a necklace then back to a ring if she wants. It can glow blue when she wants to use it to walk through walls.

For Princess M:

Same as Princess T, but also a science kit.

For Nafe:

A marc-mo-bot, so if he misses his brother, he can play with it.

For Dad:

A new computer for work that tells him what someone is thinking when they are about to walk into his office. Then he can turn his head and talk to the person and already know what to say. And the computer will keep working for him while he’s talking to the person. Then he can leave the computer at work to keep working and come home and play with me.

For Mom:

“I can’t tell you, then you’d know.”

“Please.”

The kiss-mo-bot. A robot that has soft cheeks and looks like me, so you can give it kisses while I’m at school. And it will laugh at your jokes.

Merry Christmas,

Jennifer

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Little J keeps certain toys in the car so that, when I am running my “seriously boring” errands, he can keep himself busy by imagining far more interesting worlds. His current favorite vehicle for imaginary transport during chore time is his toy pirate ship.

Yesterday, we took a trip to the local health food store, where apparently licensed products are as foreign as processed foods. The clerk took one look at Little J’s Pirates of the Caribbean ship and said, “Oh, look at that. Is that the Mayflower?”

Little J looks at me, dumbfounded. I immediately want to point out that he’s a Kindergartner even though he looks six or seven. But before I can, the clerk is leaning into his imaginary playspace and asking, “Do you know what the Mayflower is? Do you know who came over on the Mayfloowwweeer?” Because really, if she says it slowly, he might have an answer.

Turns out he does. Out of nowhere, Little J begins to expound:

“Oh, yeah. Those bossy pirates came over on the Mayflower. They told those American Indians (I swear) that they couldn’t have their place on the ground anymore and those Indians said, ‘Aw hey, no fair, you guys don’t even have a president.’ And so the bossy pirates made a president and they  came back and said, ‘Look. We have a president and you have to go to our church now and the American Indians said, ‘Aw, hey, no fair.’ And then they fought a huge battle and a lot people got dead. So they had a big feast to talk about it and they ate and ate, and they got really fat.”

Blank stares all around.

“Well, there you are,” I say. Little J disappears back into his imaginary world, and I am left feeling happy to have seen it intersect with American history for brief moment. Can’t wait for the next installment.

Hugs,

Jennifer

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Waltz No. 1

Also known as the holiday shuffle…

I’ve been thinking a lot about Chopin lately. Not shoppin’, which I guess I should be thinking about.

Chopin’s Waltz No. 1, in particular,  has been running around in my head. Running up and down stairs, big fat clumsy-but-precise fingers tripping over and skipping several stairs at a time.

I listened to the Waltz a lot when I was preggers with Little J. While I edited giant sheets of textbook pages at the kitchen table, my pencil kept time with the rain drumming its clumsy-but-precise fingers on the window of our tiny, dark apartment in Berkeley. Little J kicked at my tummy as I raced through the papers, chasing deadlines, the plinkety-plinking piano trailing up and down the stairs all around me.

Now Little J kicks, but it’s the back of my chair in the Jetta when the Waltz comes on the radio. I crank it and ask him for the hundredth time, “Do you recognize this piece, honey? I listened to it all the time when you were in my belly.”

“No. I still don’t remember it, mommy.” Kick.

Fair enough.

When I hear the Waltz these days, I still see the stairs, the scene Escher-esque in my mind’s eye:

Escher's Dream, by ClaireJones. Deviantart.com

But these days, as the fingers race up and down the keys, I see glimpses of a lady, dashing through the rain to get her little one to school, or the same little one with his dad untangling Christmas lights decorating the tree licking frosting off the knife the sprinkles on the fingers the tape the ribbon and the floor… a jumble of glittering scenes of ritual holiday preparations.

Baking.

Eating.

Conspiring with Santa, and maybe waiting for something else.

Unlike the usual Christmas tunes, the Waltz is my little soundtrack for the hustling and the bustling and the getting-it-all-done and the making-sure-to-enjoy-it at the same time.

Hugs,

Jennifer

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Snabby took this of Little J in a redwood at Muir Woods

As though any of us needed a reminder that things can turn ON A DIME. I just found out that my PetCt was clear. The thing that one group of radiologists saw on the previous scan had no metabolic activity, no blood supply, no life, no potency. Nada. Remission confirmed (again).

So the trial to keep me healthy and strong should start tomorrow with one little benign injection. Wahoo.

Let’s celebrate with pictures of J and Lil’ Salty being fly at Muir Woods. (Pictures by Snabby).

Those are shinguards on Lil J’s arms. He uses them as Superhero arm bands. I think Lil Salty is flashing some signs, perhaps Sugartown signs?

Hope your week has been calm, lovely, and non-nail-bitingly terrific.

Hugs,

Jennifer

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Hallowed

Over the week that we returned from Kauai, the spirit of island lingered in that way that it does. We found it hard to get up on time, we smelled the floral scent in the air, and I felt urged to walk around in a sarong and flip-flops forever.

But holy Kamehameha, nothing says, “You are now back in Sugartown” like getting ready for Halloween on our All-Hallows devoted street. There was Heather’s annual pumpkin carving party.

There was scaring up the place with ghoulish decorations.

And there was the Power Ranger who could just barely wait to don his power suit and hit the streets.

And as they tend to do around this paganish holiday, and this time of year in general, the sacred and the profane crossed paths.

Now, you know I like to keep my secrets when it comes to the sacred. I throw my pennies in the wishing well and don’t say a word. But let’s just say that a certain extraordinary healershamanfriend came to visit and filled our house with her light and presence. And though I’ve never met a being quite like her, I feel I’ve known her my entire life. A more generous soul, I’ve yet to meet. And her husband, I cannot begin. That is for another day.

Halloween weekend for us was about Welcome home to Sugartown, and aren’t we blessed by the people in our lives, and aren’t we always *this* close to the sacred with our holiday and everyday rituals?

Hugs,

Jennifer

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