Bright Side

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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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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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Tune-up

I’ve been so wrapped up in party planning, present hiding, cake frosting, sign making and other shenanigans, that I forgot to update you on how the MRI went.

Fantastically well.

For one thing, there was no banging. Those of you who’ve had an MRI know what I’m talking about. I think of my high school friend Matt who went on to be a Navy SEAL. He told us about POW training. I mean, no he didn’t because he wasn’t allowed to talk about it. Anyway, if he had, he would have said something about being in a small box and people banging on it with metal tools and such. That’s what MRIs sometimes sound like. But this time, as I said, no such banging.

However, after I was slid into a long (skinny!) tube, I heard blaring alarm-like sounds. You know the sound you hear when the “regular programming is interrupted to test the emergency broadcast system?” Like that, but right in my ear. For an hour.

So, I took Jodi’s advice not to open my eyes (no matter what) and pretended that, with each loud sound, one of my chakras was being tuned. I’m not kidding. I imagined I was enjoying a new, super high-tech chakra-alignment process. One hour later, I emerged from the tube refreshed, restored, and perfectly aligned.

I should also mention that I had on my lucky socks: black and grey striped knee-highs,  pink halloween bats with rhinestones eyes. That helped, too.

After the appointment, I met up with a group of ladies (OC survivors group) for lunch here in Sugartown. Get this. Out of fourteen of them, HALF are ten to twenty-year survivors. And all but one of them has had more than one recurrence. The other seven women were, like me, about two-ish years since Dx. What a group of strong women! I left there inspired and very, very hopeful.

Back to birthday talk. Last night we celebrated D’s 40th at a local family-style pizza restaurant. Little J, Princess T, and I had decorated a chocolate cake and taken it to the restaurant where the wait-staff hid it. I think Dennis was genuinely surprised when our waitress brought it out after dinner. Even though Little J had been yelling, “Where’s the cake?” Okay, thanks Dennis, for pretending to be surprised.

More little surprises and lots of celebrating around the corner, D.

Hugs and happy Friday, all.

Jennifer

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Little J and I were bright awake at 6 a.m. (still on Sugartown time, which means we actually slept-in two hours!). Letting Dennis have a few more well-deserved hours of rest, the Little one and I slipped out in our bare feet, and headed down to Brennecke’s Beach. We arrived just in time for sunrise.

Little J, in his too-tight goggles, his skinny, long limbs, and volcanic energy, charged into the waves like some kind of crazed fish who’d just seen the ocean after a long while of trying to live on land. His little fists pump the air with excitement, and his cries are born of something between delight and pent up frustration.

I fly in after him, flinging my hat, sunglasses and towel away from me.

Together we dive and splash and gasp and laugh. Every wave, though totally expected, knocks us down like some wild news that we were the last to hear. We’ve gotten good at this, as a family, I realized. We don’t try to take a wave until it’s right upon us, crashing down. Then we dig in our feet and brace. If it is too strong and drags us under, so be it.

In the space between the waves, we laugh hysterically, pointing at each other like new-found friends. Exhilarated.

This goes on for at least an hour, and I’m totally spent. It’s more energy than I’ve exerted in a long time. The only way I can get Little J to rest is to bury him in the sand up to his neck. This works for a short while since he’s laughing so hard, the sand is falling away faster than I can pile it. He can’t resist the urge to unearth himself and races back into the water.

I follow suit, but now we’re floating. Not bashing against the waves. The golden light of the early sun plays on the water, our skin. It flickers and mingles with what I can sense as healing energy that rises up from deeper water to just below the surface, where we’re suspended gravity-free, at last. It is somehow a perfect baptism by the alchemy of saltwater and surrender.

I think of Chris and Bob, Monica’s parents. Kind enough to share their Hawaiian home with us, they’ve made this retreat of renewal possible. Little J and I shout a loud, “Thank you!!” that we hope will fly across the two oceans that separate us and fill their hearts with the spirit of Mahalo Nui Loa during this difficult time they’re facing. We send them (and you) love and energy to crash through unexpected waves and to float when you can.

Hugs,

Jennifer

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I was going to post today about my trip to the ER early Saturday morning, about how being in the ER is the only time that I actually wonder whether this fight is worth the agony and indignity it sometimes involves. I wondered about how shocked my faithful readers (you are all over the world now!)  would be  to hear that sometimes I want to give up. The ER can really make you feel that way.

Instead, I am happy to post about the fact that our family is DONE WITH CHEMO. You heard me right. WE ARE DONE!!!

I walked into the Dr.’s office this morning with my numbing cream on my IV port, and my yellow sticky note on my Elle Magazine, ready to regale Doc G with the usual battery of questions and results of my most recent research (thank you, Dan). When he sat down and said, “I think we’re at a point where stopping makes sense,” I didn’t even hear it. I responded with, “I really don’t want to do this anymore.”

He and Dennis looked at each other like I hadn’t understood. Because I hadn’t.

“I think we can be done now. Your CA-125 is great, and your bone marrow has taken a beating. Doing more would not make sense.”

My first thought was that, instead of spending six hours in chemo today I was going to read my Elle magazine, have a long bath, spend time with Dennis, and plan his 40th birthday party.

And then it hit me. I have my body back. My bones, my poor bones and their marrow can begin the healing process.

We all teared up, even Doc G.

It is all I can do not to run down the street and get Little J out of school and smother him with kisses. Boy is he gonna get some after school.

For now, I’m so happy to share this news with you all. Biggest hugs and thanks, and keep reading here for  lots of pictures and notes about the sweet life in Sugartown. Because we never really lost sight of that, did we?

Jennifer

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Clarity


Ahh, there’s that silver lining.

Yesterday I found out that, due to the bone-crusher shots, my white cell count was high enough to do chemo.  There will be no seventh round because, as Doc G states, “By these delays we see that we have reached toxicity level.” That leaves ONE more infusion on to go. A few more white cell shots will be given to make sure we can get the last chemo done on Monday, in time to rest up for aloooha time on the 15th.

After I return, I’ll have a scan then start on one of THREE possible maintenance plans. Option 1) is Avastin, a non-chemo drug which cuts off blood supply to developing tumors. Preliminary study results for Avastin for maintenance are good-ish. Option 2) is  a vaccine trial at UCSF. Everyone in the trial will get a  immune-boosting drug to help stave off a recurrence. Some in the study will get the ovarian cancer vaccine in addition to the immune-booster. Option 3) is at my favorite place, the California Cancer Center. It involves a 50-50 chance of getting a placebo or a vaccine on its own.

We’ll see. That leaves a lot to think about. For now, we’re just focusing on getting through these last two weeks of chemo.

Hugs, and a Happy Anniversary shout out to Dennis. Remember when we danced to this song eight years ago while Eric played?

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The last three weeks without chemo have been so full.

Dennis and I dined with Uncle Mike at our new favorite spot atop a hill here in Sugartown. We also feasted on Ted’s famous eggplant Parmesan, whose ingredients came entirely from Ted’s garden. I lunched with Linda in the city, a lovely and belated birthday treat. I shared lattes in a bowl with a dear friend and Peet’s treats with a new friend (and her gorgeous baby). I walked with Marina, and brunched with Mari in Tiburon.

Little J conquered the diving board at the club.

I went to my first PTA meeting, did some yard duty (!), and attended our first parent-teacher conference. Other school events included the walk-a-thon, the ice cream social, and a support-the-school night at a local restaurant. Turns out the parents at our neighborhood school know how to socialize for a cause, let me tell you. Count me in!

On Labor Day, we went on an impromptu adventure to Heart’s Desire Beach in Tomales Bay. Little J got to play with his buddy C, who he hadn’t seen in a while. Silliness was the order of the day.

And speaking of silly:

On Tuesday, I took these same two to feed the ducks at a pond near our neighborhood.

Yesterday I took Little J and a pal from his class to their first 3-D movie.

Of course tea with the ladies on the street and a visiting cousin from England was sweetness in a glass poured over ice with some lemon.

Phew, like I said: it’s been a full three weeks of no chemo. And it looks like I may have a fourth. While my platelets have made a heroic comeback from 40 to 190, my white cells are still pooped out. I’ll find out tomorrow whether we can do treatment with the help of some bone crusher marrow stimulating shots or whether we’ll have to wait another week.

If we have to wait, it could be a good thing. We’re going camping this weekend, so it would be nice to have a little more energy. On the other hand, as you all know, I want to get this done! So it’s a little frustrating to be stalled out an inch from the finish line.

But somewhere nearby in Sugartown, church bells are ringing. Down the street, in a classroom, Little J is sitting and maybe singing. In Los Angeles, Dennis is winging his way back home to us.

There is so much sweetness for the reaping in these near-harvest days. It makes it a little easier not to pine for things to be different.

Hugs, Jennifer

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On the way home from post-treatment-then-post-healthy-five-yr-check-up for J,  we stopped for our usual frozen yogurt. After that, Little J was tuuuckered. “Daddy WHEN are we going to be back in Sugartown?”

“By the time you count to thirty, we’ll be off the freeway,” Dennis answered.

Immediately and predictably, Little J started to count as fast as he could. To get the off-ramp there faster.

When he realized he was going to finish before the off-ramp came, he slowed down. When he realized he couldn’t control how quickly the off-ramp was going to come, he let it go and started to do something more fun. “Let’s all count to one hundred.” We were home before we knew it. The kid’s been in kindergarten for three whole days, but he already knows the most important lesson of all, one that Joan Didion taught me: “Play it as it Lays.”

Speaking of Kindergarten, here’s Little J on the first day.

We agree as a family that we’ve accomplished our goal set back in May to have a great summer in spite of the cancer treatments. The last few weeks were no exception. With my birthday celebrations followed by a super-amazing blood-transfusion, and James tearing it up at summer camp, how could they not be great weeks. Here for you, the five senses tour:

Taste

Uncle Mike turned 50 two days after I turned 41, so he treated us all to brunch at Thomas Keller’s Ad Hoc in Yountville. Yum is not enough. Family-style delicious fare shared with Coopers, their BFFs, their lovelies, and their little ones is about as much perfection as one can take. Then there was the local pub for Fish ‘n Chips on my actual bday with my Sugartown girls. Finally, Central Market with the BFFs Mari and Carolyn.

Watermelon salad with feta cheese and lavender-infused honey. MMM.

*Romantic dinner in SF with Dennis after quick jaunt to Tiffany left out to preserve sweetness and mystery.

Smell

Chlorine, spray-on sunscreen, and victory as Little J and his swim coach Mason engage in a smile-off. J has just swum half the length of a full-length pool.

Sound

The crunching and slurping and satisfied mmms of the long-awaited last-day-before-school-homemade ice cream sandwiches. There were even some bees buzzing nearby. And maybe a cat yawning in the sunshine.

Touch

The last hug and kiss before school.

Sight

Before this happened:

Sixth sense?

Well, the last thoughts of summer leave us so grateful for my successful treatment and our healthy, happy kid. I have one more round, possibly two (if my bone marrow can take it, visualize strong marrow!) but I’m not counting the seconds to the off-ramp, either. I’m walking to school each day with J and D and playing “I spy with my little eye” and secretly fantasizing about being a part of the PTA when I have the strength. Playing it as it Lays.

Hugs,

Jennifer

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