Morab-003 Trial

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It feels like it’s been a while since I’ve written anything or even felt the desire to. The truth is, my weekly taxol regimen has been much harder than we thought it was going to be. The first two weeks were fine, but after that, I had a week of fevers which resulted in a trip to the ER, and week of such utter exhaustion that my heart was all fluttery and my vision blurred. I was walking through Whole Foods when suddenly it felt like I was wearing someone else’s glasses. It was scary.  It went away quickly. But, still.

I’ve simply been physically and emotionally drained and too pooped to post.

But enough boo hoo.

The good news is that we know the MORAB-003 trial is working. My latest CT scan showed that the 7mm “lesion” is now 1-2 mm. And there seems to be no new activity. Whew. The other good news is that we’ll be able to lower my dose of taxol starting next Monday. I’m hoping this will mean that I won’t have to literally draaaag myself everywhere like a too-heavy back pack. I’ve also learned that sometime this summer, I’ll start getting every third week off of chemo altogether.

So, if this stuff keeps working, gets more tolerable, and allows me to have a break here and there, what else could I ask for. Hair? Who needs it when there are wigs and cool summer fedoras.

I’ll be posting again soon when I make through these doldrums.

Hugs,

Jenn

*photo credit

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When my mom was here last week, we had to take a few trips to Cancer Central for Nupogen shots. While we were there, we ran into my friend Mandy.

She’s been doing chemo for a long time now for the OC. She’s on the MORAB-003 trial now, though, and doing well. In fact, some of the most persistent tumors (like the one on her liver) have disappeared altogether.

I was so happy to hear Mandy’s great news, especially in front of my mom. I can tell my family all day long that MORAB-003 is resulting in miracles for some women, but for my mom to hear it out of Mandy’s mouth, and to see the joy on her face: priceless.

On the way home, my mom, the eternal optimist that she is, said she felt it was serendipitous that we ran into Mandy, a sign that we were going to find out soon that MORAB-003 was working for me, too. We’ve been waiting patiently, you see. They test the CA-125 tumor marker at the beginning of the trial, then again, after four doses.

Well, mom was right. As usual. We found out this morning that my CA-125 had reached 756 when I started the trial, and after four mini-doses of taxol (and maybe the study drug), the number is now down to 110!

Phew.

I mean, Hallelujah!

I don’t think it’s sunk in yet that this very doable “lifestyle” chemo regimen is working for me. When it does, I might explode. Or cry. Or it might just be that we’ve been on this roller coaster for so long now that my reaction will be to simply be thankful and carry on.

It’s storming here in Sugartown today. Big fat raindrops pelt the daffodils. But this year, their stems are so robust that their bright yellow heads don’t even sag in the downpour. Maybe each year that they return, the daffodils grow stronger, more resilient. They just stand out there in the rain in their quiet glory.

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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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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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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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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