March 2012

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Little J and I took a colander out to the garden yesterday. Under a grey sky, we dug through the brambly tendrils and leaves of the sweet pea vines and pulled at the plump pods.

We gathered quite a bounty and sat down at the table to pop the pods open, one by one. I showed J how to slide a finger down the center of each, pulling fresh peas from the smooth bellies of their sweet, green homes.

The process soothed me. I’ve had a lot weighing on me. As we search for a clinical trial for my next round of treatment, we struggle to stay positive. PARP trials fill up between the time I hear about them and call about them. Many trials are closed to me because of my “heavy pre-treatment.”

When I dig my nail into the flesh of the pea pod, I am awed by the humble work of nature By simply waiting in the dirt and drawing in sun, water, and nutrients, the pea pod grew a thick skin and vibrant, watery flesh that now fills up the space beneath my nails and fingertips as I scrape.

I long for the perfect health of this simple, green plant. It takes in goodness. It gives out sweetness. Like the little boy across from me, it is pure from the inside out, nothing eating away at it. They are whole.

I still have faith that something will bring me back to that place: the right trial, Doxil. Something.

More importantly, there is faith. Enough faith to seed and grow plants and flowers to fill all of Sugartown. That has to be worth something.

Hugs,
Jennifer

Chorus

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My PetCt scan went well this morning. Mari spent the night last night so she could take me. It’s always better for D to be able to walk with Little J to school on scan days. It was also good to be able to take an Ativan and not worry about driving home. The Ativan relaxes me and helps me with the nausea caused by the various dyes and radioactive liquids I’m injected with.

My parents arrive on Sunday to stay in the house they’ll be renting for the coming year so that they can come and stay as often as they want.

I get my results on Monday, and we’ll be talking about a new treatment plan.

We are all still pretty stunned that Doxil is not available in spite of the fact that many cancer patients, including me, desperately need it.

Dennis and my mom have been in touch with Congresspeople all week about this. Dennis even spoke with Diane Feinstein’s Chief of Staff. I may not be able to get it for this round of treatment but will definitely need it in the future. It is insane that pharmaceutical companies and their lobbyists are coming between me and my fight to survive.

I’m happy to have so many people on my side, praying and fighting with me.

Hugs,

Jennifer

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It’s not the clearest photo, but here’s Little J crossing home plate at his first T-ball game. It was my first, as well, and I wasn’t sure what to expect.

The kids ate it up: piling on the ball like football players in the outfield, cheering each other on, and sliding into home base. Little J jumped and cheered for every one of his own plays. Besides me, the kid is his biggest fan.

But by the second inning, all bets were off. That’s when I realized t-ball games were like Skittles, offering a huge rush and followed by a thorough crash.

Kids scattered behind the backstop, climbed the trash bins, and hung on their parents, asking to go home.

Luckily the coaches called the game and we all went to dinner for second winds all around.

Little J and his red-headed friends kept us entertained and I was amazed by J’s stamina. After all, before the game, he’d danced his booty off at the school’s talent show rehearsal.

He had had, he declared, an AWESOME day.

And sometimes for me that is all I can ask for.

Hugs,

Jennifer

True

Last night I made a typical Tuesday-night dinner: chicken tenders with herby panko crust, green beans, and smashed sweet potatoes.

When Dennis arrived, the dinner plates were still steamy and we all dug in for our first family sit-down dinner since Hawaii.

I looked at my first bite of green beans and thought in an instant how comforting they looked, so predictable and normal, and as I chewed them, I was suddenly struck by how so terribly unpredictable and not normal things were right now.

I dashed to the bathroom because my eyes were welling and I couldn’t face Little J with a broken, tear-streamed face.

Little J and Dennis followed me into the bathroom and Dennis instinctively began to tell J I was sad to be home from Hawaii, but a second later we all realized we had to share with Little J what was going on. You see, we usually spare him the ups and downs, but it just felt like the right thing to do, to explain.

I sat on the toilet and cried while Dennis took J back to the dinner table and told him what was happening. He explained that Mommy’s cancer number was up, that we need to do a scan and maybe change her medicine. J asked, “What if the number goes back down?”

When I returned to the table, Little J searched my face for clues. To what? Maybe how bad it was. Maybe something left unsaid. I smiled at him and told him I loved him and that he had to eat all his potatoes. And that if he tried the green beans, he could have an extra cookie. It all comes back to what’s right in front of us. Dinner. What makes us smile. Cookies.

Little J did a few little tricks to make me laugh, things he knows will draw a smile. I took his little hand from across the table and told him thank you. And more importantly, he didn’t have to feel like he had to make this okay. It’s not his fault. He doesn’t have to try to fix it or make me laugh. I don’t want him to take on that responsibility.

It was hard to look at Little J for the rest of the night, knowing that he knew, knowing that he’d seen me cry. Believe it or not, and I will just tell YOU this: through everything, he has only seen me cry about the cancer this one time. And though it was hard to show him my vulnerability, it also brought me some kind of peace, some kind of relief to know that he understands it’s ok to be afraid. To be vulnerable. And that we’re going through this together as a family. And there are no secrets.

I didn’t wake up with my game-face on, like I normally do the day after bad news. In fact, it was all I could to drag myself out of bed after a fitful night’s sleep. I walked J to school then came back and sat for a long time, feeling angry and sad. And I allowed myself to feel those things. It’s exhausting, but it’s honest.

At the bottom of it all, my faith glows like a fiery orb. And I’ll be honest with my feelings and allow them to rush through me. I’ll take care of myself and be honest with my family. And when I need to act, and be strong, I will.

Hugs,

Jennifer

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So we met with Doc G today and the news isn’t great.

My CA 125 is up another 20 points. That’s 88 if you’re keeping track.

The good thing is that it hasn’t skyrocketed and we have some time to figure out what to do next.

The outrageous thing is that the drug I should take next, Doxil, is not available. This is outrageous to my family, friends, and me. And yet there’s seemingly nothing we can do about it.

So the plan for now is to do a Pet/Ct scan this week to see where the activity is while we research clinical trials.

I’ve lost count of how many times I’ve been treated in the last three years. I know my optimism is endless. My energy, however, seems finite and I need to be in shape for new treatment at some point.

The near future calls for simplicity in my endeavors and plenty of time with family and friends.

Hugs,
Jenn

Home

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Some one is glad we are back.

It’s a rough transition from paradise to a-half-hour-til-you-find-out-if-your-cancer-is-outsmarting-your-chemo.

We’re all on pins and needles. I’m thinking of palm trees and little J dancing in the sand to keep calm.

More later.

Hugs,

Jenn

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This is more like it.

The sun is out and we’ve been enjoying every beam.

Thanks to Uncle Mike, we’ve been poolside at the Sheraton today.

We made leis and took a hula class this morning. See J’s demonstration of both above.

It’s just 3:00 now but it feels like we’ve been out here for days. We don’t want to waste a single golden ray.

Aloha,
Jenn

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At the airport Friday, I asked friends to imagine us on Kauai with blessings for healing pouring down on me like rain.

And it has not stopped raining since we arrived. Literally.

You know us. We’re not a family to let anything dampen our spirits, but we need sun.

Please imagine us with blessings shining down on us like the SUN!!

Aloha and mahalo,

Jenn

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I haven’t written in weeks, I realize. I haven’t felt much like it. That hasn’t happened since, well, ever.

I’m not sure why it is but I don’t feel like it matters. The good thing is that I feel like it now.

We’re leaving for a week in Hawaii on Friday. I’m at the Cancer Center now, announcing to all who will listen, that I don’t want to know what my CA-125 is. I’ll deal with that when we’re back, when I have eight days of aloha to buoy me up for any kind of news.

For now, there is shopping for a swimsuit, packing my carry-on with in-flight surprises for Little J, and crossing our fingers for good weather.

Hugs,

Jenn