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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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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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Christina Green 2001-2010

I was going to post about my intention to be more compassionate this year. More tolerant, to be specific. I have a tendency to react to things in a way that causes me pain. I react inwardly, stuffing down feelings which never really dissipate. And before you know it, I’m surrounded by black swans. My own shadow side, projected outwardly. I think we all do this, a little bit. Right?

So is the answer to be more compassionate? More tolerant? And if  so, what does that mean?

A world-renowned specialist in Chinese medicine and cancer treatment, a guy whom people travel the world to see in his tiny office in San Anselmo put his pen down and looked me in the eyes after we’d talked for about a half hour, after he’d had a chance to gather a sense of me.

“You know there are some who believe there is a cancer personality.”

“Really.”

“Yes. There’s a belief that our cellular activity mimics our mental/emotional activity. If we are the types to accommodate abuse and other transgressions, no matter how large or small, then our healthy cells will do the same. They’re suppose to attack the offensive, rogue cells. But the healthy cells look the other way. They accommodate the dangerous cells. Then the cancer grows and takes over.”

“That’s fascinating,” I said. Accommodating. Emotionally looking the other way.

I don’t know if I believe the theory, but I find it intriguing, a sort of quantum relationship between cellular behavior and emotional behavior. I certainly haven’t forgotten it. I wrote down what he said, word-for-word.

“So, if we have this cancer personality type, what should we do?” I asked.

“We should get really, really angry.”

Interesting. Allowing ourselves to rant and get pissed off, we teach our cells not to put up with it so that our healthy cells turn on the cancer, stick up for themselves.

But what about compassion? Tolerance? Isn’t that what Jesus and the Buddha would have us practice instead? Do we respond to hateful political rhetoric, for instance, with tolerance and compassion? Do we look the other way? Won’t the cells then do the same and allow the cancer to grow? Incite the shooter, like the one in Arizona, to take people down?

I just don’t know.

I was mulling over this question over my morning tea while little J played out a furious battle between his Hero Factory characters. Then I read Tim Booth’s blog post in which he asks a similar question. He wonders what would happen if we let our inner F*you a little free range. Would we be living from a space of truth? And would this mean we are not compassionate?

Some people think that every word or action is an expression of love or a desperate cry for love. I was going to post today that my fourth intention for 2011 was to live from a space that sees things this way. My intention was going to be to have compassion and tolerance for every word or action, knowing that it is either from a space of love of lack thereof.

But I just don’t know.

Instead, my fourth seed, one for love, is the intention to try to balance compassion and tolerance with my inner F* you who won’t tolerate bad behavior, hate-inciting language on the part of our “leaders” or the people in my community, even. I don’t know how to balance that, but I intend to try to this year. To show my cells (and my son for that matter) that we deserve better.

Hugs,

Jennifer

ps: Please share with me how you balance compassion and tolerance with “not putting up with it.” I know I have some peeps out there who are especially good at it.

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Hello! Today marks the first anniversary of Four Seeds. Readers have popped up like wildflowers around the world over the last twelve months, and here we are together, celebrating the arrival of 2011.

Instead of making resolutions this year, I’ve decided to plant seeds of intention. Four seeds, to be exact.

The first seed is the intention to focus on those who inspire me.

Who inspires me?

First there’s Dennis and Lil’ J:

How can a girl not be inspired by these guys?

Then there are the women in my life: my mother, my friends and family, and the other survivors I know. They are my mentors every day and in ways they don’t even realize.

Now I want you to meet three more remarkable women who inspire me to live like I mean it in 2011.

Kris Carr

Kris, a cancer survivor and wellness warrior, is a film-maker, juicing advocate, and a dang good writer to boot. Anyone who has cancer, or knows someone with the c, should check out her books and film. And her website is chock full of resources for tapping into your own inner magic through healthful practices.

And speaking of magic:

Meet Kate Shela.

The Spanish have a special word to describe people like Kate: duende. It refers to that certain mysterious something that some people exude and transmit to others just by being. Take a look for yourself.

A healer, shaman, and dance teacher, Kate clearly follows her life’s calling without fear or reservations. She emanates loving energy, and to be near her is to be transformed by the openness of her heart. Kate teaches seminars and dance throughout the US and the UK. Check out her schedule as she may be coming to a town near you!

And finally, meet Laura Shawver.

Laura is a cancer researcher, surfer, and ovarian cancer survivor. She founded The Clearity Foundation with the intention to provide individualized treatment for women with ovarian cancer. She’s helped hundreds of women with the oc and has raised awareness about the kind of tailored treatment that will lead to our eventual cure.

What unites these three amazing women is that they live from the heart and improve the lives of those around them simply by pursuing their passions. That inspires me.

Who inspires you?

Hugs,

Jennifer

ps: Forthcoming seeds of intention are (you guessed it!) renewal, beauty, and love. Stay tuned.


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