chemo shmemo

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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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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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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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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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Autumn Plans

J. Briggs

Even though it’s not officially fall yet, it sure feels like it is. School has started, the sun hangs lower in the sky and sets earlier, and the air has that crisp clarity to it and even smells a little like freshly sharpened pencils. Okay, that last part might be mostly my imagination.

Our family’s plans for early fall included my being done with chemo by today. A delay for a blood transfusion a few weeks ago set us back a week, and another day yesterday set us back one more. Last chemo, my platelet count was 95, almost too low to  get an infusion, but Doc G and I decided to soldier on given my reluctance to delay. Yesterday, the count was 45 (normal is around 120) which is way too low to do chemo. I was so disappointed to delay another week, but there’s nothing we could do. There’s no shot to boost platelets; you just have to wait. Now we’re hoping to be able to squeeze in these last two infusions before our trip to Kauai on the 15th of October. Please, please!!

After Hawaii, I’ll have Pet/Ct to make sure the cancer ditzels have vanished as my low CA-125 (now 9.8!) would suggest. Then the oncologist power possee will pow-wow and decided whether we should try to squeeze in another round or call “uncle”: Doc G’s words. Did he see Madmen this week?

After that, we’re now talking about a maintenance plan with a drug called Avastin. Unlike chemo, which attacks all quickly multiplying cells (including hair and nails!) Avastin cuts off blood supply to tumors and has been shown to keep ladies with the advanced OC in remission longer. So, it’s a good option. It has no chemo-like side-effects, so it’s considered a “lifestyle” drug, meaning you can continue with a normal lifestyle while on it. There are a few scary possible long-term effects which I won’t go into. Our hope is that this drug will keep me in remission until something like a cure is found.

Speaking of cures, September is National Ovarian Cancer Awareness month, so please take action to increase funding for research. And please continue to visualize my health and a cure for all us ladies who are battling.

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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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