Oh no.

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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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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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http://mouseshouses.blogspot.com/

Happy New Year’s Eve Eve, everyone!

I wanted to update you all on my journey as Mouse #8 in trial codename Stayinremissionforever.

My most recent shot was two Fridays ago. It was injection number three of either:

1. super-immune-boosting Chilean tree bark alone or

2. tree bark plus anti-tumor vaccine.

I arrived at the Cancer Center to find out that my white cell count (taken two days prior) was too low to receive the shot. During chemo treatment, low white cells just means you simply delay treatment a week. But when you’re part of a study, low white cells means you’re kicked out of the program. Just like that. No delays.

I was told I would have my blood redrawn and that there was a good chance the white cells had increased in the previous forty-eight hours. I had a gut feeling that all would be well. But still.

The Doc and her assistants asked me to get dressed and go straight down to the lab. I squeezed back some tears, and then some leaked out. The ladies were sympathetic, which caused more leakage, but I avoided a gusher by repeating my internal gusher-stopping mantra, “Whatever happens, there’s Bravo TV tonight.”

I went downstairs to the lab and had my blood drawn. Then I sent out a few panicked texts and emails, then went across the street for some Pho to calm my nerves. I had an hour to wait for my results. I decided I would defer any freaking out until after I had the results, and only if they were bad. Of course, right? But easier said than done.

I sat in the tiny Pho restaurant which was (honestly) called something like “My Grandfather’s Comfort Food Cafe”. I sympathized with the soggy umbrellas slumped in the corner by the door. The rain sheeted down outside.

After an eternity, I finished my soup and went back to the cancer center. It had only been thirty minutes. I called the coordinator to make sure she had my cell number right. Just in case. She did.

A few minutes later, the coordinator called back to tell me my white cell numbers were good. We were back on. I’d never been so excited to be getting a shot that hurts worse than a bee sting.

I headed upstairs with a huge grin, happily prepared to wait the half hour necessary for the shot substance to THAW and then another half hour for the nurses to observe me after the injection.  All went well. In fact, Doc C actually came up to the infusion room to let me know that, not only were my white cell numbers good, but my immune system seems to be benefiting from the shots.

Yay!

So now I’m in the middle of a three-week reprieve from all doctor appointments. Then the shots will start again. I’ll be getting them once per month.

For now, we are holiday central here in Sugartown. Our rooms and walls are soaked with the good energy and warmth of guests and visitors. Little J has had nothing but time to play with friends and family. Dennis and I have even gotten dressed up and gone on a few dates (thanks to Debbie and Grandma).

It’s turning out to be a joyous end to an adventure-filled year, friends. I hope you’re ringing in the new one with the ones you love.

Love, love, and love,

Jennifer

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My check-engine light came on recently. One of the things I love about being in remission, about being clear of disease, is watching myself freak out about something like the check-engine light coming on.

“Sh*&t! This Jetta. It’s time for a new car. When am I going to get the time to take it in to be checked? And the cost? It’s bad timing. Totally inconvenient. Can’t believe it.”

And then the laughing, the laughing that ensues when I find myself literally freaking out over the check-engine light.

So I arrive at Leigh’s yesterday morning. She offers to drive given that MY CHECK ENGINE LIGHT IS ON. And it’s just as well. The Jetta is a might too small to hold Little J’s energy, let alone Lil’ Salty’s and his sister Snabby’s. Off we go to Muir Woods to watch the boys stomp, sing, splash, and chat up passers-by, basically add to the beauty of the park while we girls talk.

Then this morning, I’m dropping off Little J and heading to a first-grade classroom to do a little volunteering. My phone rings and it’s the coordinator of the maintenance trial I’m starting this week. Oh boy, excitement.

“We found something on your October 7th CT scan that the other radiologists wah, wah, wah.” Her voice becomes round and full of sounds that aren’t words.

“Come again? You found what?”

“You need to have  Pet Ct. We’re not sure you can start the trial…concern of new disease…wah, wah, wah.”

The next thing I know, the blood is drained out of my hands, but I’m somehow passing out flashcards to a small group of smiling six-year-olds.

“The long A sound, that’s right,” I hear someone say. It sounds like me. It is me.

“No, it’s wait, not wail,” I say to someone with ponytails and to myself.

“Miss Jennifer, help me find which word is wrong.”

On my way home, I call the nice lady back, the one who had passed on the news, and I ask her if we can have a do-over on our conversation. Yes, it appears I’d heard her correctly. Something one group of radiologists did not find, but another group did. I’ve heard of this happening before, and it turns out to be nothing. Nothing. I check for my gut reaction. Definitely, it’s nothing. I know it. We will have proof soon and the trial will be back on.

After Muir Woods yesterday, Little J and I got back in the Jetta to head back home from Leigh’s house and guess what? The check-engine light was off.

Hugs,

Jennifer

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Mary Cassat, "Little Girl in Blue Armchair"

Can I have a complain?

This is what Mari and I ask each other when one of us calls the other to complain about something we know doesn’t really merit much energy. And yet…there is a need to get if off one’s chest. Know that feeling??

So yesterday I found out that chemo must be delayed ONCE AGAIN. Argh. This time, I might not have to wait a whole week, though. I’m getting bone crusher shots to stimulate my marrow today, tomorrow, and Sunday. We’ll do an early-morning blood test on Monday and hopefully be able to resume treatment that morning.

Why is it so frustrating to be put off again and again? I’ve been thinking about this since last night. Part of it is about control. When you have cancer, it’s so hard not to feel like you have zero control over your life;  what’s going to happen to you, both in the moment, and long term. But at least you have your treatment plan. You can mark the days on your calendar, plan your activities and rest days around those dates, do the shopping, the laundry and errands leading up to those dates. All the organizing makes me feel like I’m still in control of my day-to-day. When the rug gets pulled out, my sense of control is diminished. To say the least.

And then there’s the emotional energy that goes into preparing mentally for chemo day. I’m not even sure what goes into this. It kind of happens on a subconscious level. I liken it to waiting backstage for your cue. Or preparing for a job interview, or surgery, or…chemo. A big chunk of my emotional energy gets stored away as we lead up to the day; it revs on the heart-fluttery backburner of my chest and my belly. Dennis and Little J are storing, too. And then we have to wait. Where is that energy supposed to go?

Finally, there’s the fear that chemo is taking a toll on my body. I mean, of course it is. But I usually don’t have to think about that. I can kind of denyignorepretenditaway. But when the doctor who doesn’t sugarcoat anything says, “I’m sure your numbers will go up by next week,” and is really quite taken aback when they don’t, the fear creeps in. A bit. I’ll admit.

So, there. I said it. Sometimes I need to complain a little bit. As Little J says when he has to have a cry or when he has to say “butt” or “fart”, “I just had to get it out.”

Thank you for that complain. And Mari, I will be calling later and asking for another if this one doesn’t make me feel better.

Hugs,

Jennifer

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Guess who had an amazing weekend.

On Sunday, Dennis took Little J fishing at a stocked lake north of Sugartown. J caught five fish and was beyond proud of himself.

Those cheeks are soo kissable.

I stayed home to rest and read poems by Dan Whyte, a new book Ryan sent which seemed to be written for me, for that exact afternoon.  Not just this/aromatic cup/from which to drink/but the flavor/of a life made whole/and lovely/through the/imagination/seeking its way.

Try as I did to wrap myself in the perfection of the lines, symptoms started to pile up quickly and out of the blue. I couldn’t get out of bed and just gave into the heave of it.

When the boys got home, the burst of excitement from “the catch” revived me. Little J was beyond thrilled and ready to go swimming. D took him to the pool, and they cooled and splashed for hours.

That night, as little J shoveled down pizza, D called the on-call doc. There was just too much turning toward the worst: nosebleeds, swelling belly, etc. We were ordered to the ER. Neighbor Debbie came over in her cloud pajamas (because she is an angel) and held the fort, comforting little J who was so tired from his thrilling day, but still processing that mama had to go to the doctor at night.

Hours and hours went by with blood tests and hydration and x-rays and waiting, and D telling stories of  “the catch” and trying to stay alert and focused on getting home. The news was just that the chemo is really, really taking a toll. Blood Pressure 70/55, platelets 30, etc. etc. And with the swelling and the pain, it’s just about having a cancer that takes over the belly. It’s either the chemo getting in there and working, or something else. We’re going for the former. We were released near midnight and raced home to shower little J’s sleeping cheeks with kisses.

Memorial Day was better, much better. Christina came over with magical Austrian bone soup with marrow dumplings. “This broth is my mother’s medicine.” I sipped it on the back deck while we talked of angels and the wind whirled around us. Then she cut my hair short, like last time. Really short. When she left, I felt so renewed and my spirits lifted.

After a long, peaceful nap, neighbor H invited me for tea in a new little space she created in her backyard. “A little Zen place behind the lemon tree I want to show you.” It was so lovely to just sit out there and sip some Earl Grey and smell the lemon tree flowers while she talked about her garden, her boy’s new teen-ish ways, and the coming summer.

In the evening, D made his famous ribs, and we had neighbor D and her husband T over. Ribs, the trout that J caught, and talk of easier times when D and I traveled to Australia, got engaged, and lived like hopeless romantics. Later, texting with Ms. Miller about love, I realized D and I still live like romantics, but not hopeless. Hopeful. If love is what’s needed for what’s bad to go away, then the three of us: Little J, D, and I are in good shape. In fact, we’re blessed.

Dennis’s mother, who passed away on Memorial Day when D was eighteen, would be so proud of her son, the way he cares for his family, the way his heart is so open. The way he draws such good people into his life. The way his son beams and beams with inner light.

A memorable weekend. Difficult and full of blessings at the same time.

Hugs,

Jennifer

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Vintage McCall's pattern

The last time I posted here, my CA-125 (the blood marker for Ovarian Cancer) was up to 19, from its usual awesome 3. Anything above 35 is bad, but for ladies who are in remission, single digits is the goal.

Last week, we found out my number is 353. Yikes.

D was in Europe on business when I emailed him the news from the parking lot of the doctor’s office. It was one a.m. where he was, so I knew it would be about five hours before  I could talk to him. I felt like I needed that much time to gather the strength to hear his voice on the other line, to tell him we had to start chemo again.

I drove the twenty minutes home thinking about how I was going to break the news to my mom who was at home with little J. I couldn’t think of the right words. As it turned out, I didn’t need to say anything. She knew the minute I walked in the door, as moms do. We sat down at the table and looked at each other in shock. The same table, by the way, where she helped me with my math homework, served our family the best dinners imaginable, and planned my birthday parties. We cried a bit, discussed logistics, then got dressed up and took little J out for a burger at our local favorite pub.

While we’d been talking, D’s Blackberry had beeped him late at night in Stuttgart. He packed and gotten in a cab. Before we’d walked out the door for Finn’s Pub, his assistant had gotten him on the next flight for SFO. (Thank you forever, Amy.)

Since then, I have been scanned (again!) and am now assuredly visible from space: a warbly green radioactive glow in the outline of a woman’s body, her two hands held by the bravest guys on the planet, an army of friends and family behind her.

The scan showed a little tumor on my left lower inner side and a “sprinkling” of ditzels of disease on my lower inner right side. The pain is worse than when I was first diagnosed for some inexplicable reason, and the rogue cells are more aggressive than they were the first time, which is hard to fathom given how fierce they were before.

But, as Ms. Miller says, they are a house of cards waiting to be toppled. Treatment starts tomorrow. I’ll be getting a powerhouse combination of cisplatin and gemzar. I’ll get another dose the following Tuesday, a week off, then start again. This will repeat for six to nine sessions, depending on how quickly the house of cards falls.

I know. I can’t believe I’m typing these words either. But here is the silver lining (and it is a thick and shiny one). Because of my BRCA-1 gene mutation, the combo of chemo drugs I’m getting has a very high chance of working. In my mind, it will absolutely work and has, in fact even started to work. The rogue cells are shaking in their boots and stomping in protest. Also, it’s not going to be cold and flu season. And finally, we are all determined to have a lovely summer in spite of this slight inconvenience.

We won’t be setting up a CaringBridge page. We’ll be posting here about our lovely summer: swimming lessons, trips to the beach, and with occasional updates on that other thing.

Love and hugs,

Jennifer

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