Bright Side

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Melody Gardot

Instead of chemo yesterday, I had a blood transfusion. My platelet count was too low for me to be treated. At first, I was so disappointed, mostly because this means we’ll be pushing the end date of my treatment out by one week. Then Mari pointed out that I actually just earned another week of summer, a week of feeling good at that. Getting two giants bags of blood added to your system is a very positive thing. A-positive, to be exact.

So I got my blood and wow! (Dear vampires, I see what all the fuss is about.) I haven’t felt this good since maybe 2007. I’ll be enjoying an extra week of summer with extra energy and feeling strong. Fabulous. Blessing in disguise. Which reminds me. Do you know the story of Melody Gardot? Mari told me this one.

At nineteen, Ms. Gardot was hit by a car while cycling. Injuries to her head, spine, and pelvis kept her in a hospital bed for an entire year. Lying on her back. It also left her with hyper-sensitivity to light and sound, so she has to wear sunglasses all the time, even indoors.

Melody used music therapy to lift her spirits and to help with the neurological damage that made it difficult for her to speak, think of the right words to say, and remember things. During this time, she started to play the guitar and to sing and write her own songs.

I think you’re going to want to add her to your play list when you hear this. Enjoy Ms. Gardot singing Worrisome Heart: (ps: The second photo looks exactly like the street I lived on when I lived in Spain, right Jon?)

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Persephone and Hades, by Stephanie Pui-Mun Law

I got an email from a dear friend this morning. I haven’t seen him or his sweet husband, one of my most cherished friends, in a long time, and I learned that he is so worried about me that he feels scared to even contact me to ask how I’m doing. Sweet dear. I had no idea people worried about me. Are you? Please don’t. If you are, this post is for you.

Dear, sweet friend writes:

We have been thinking a lot about you lately. How are you doing? What are the docs saying about this round? Honestly, he is often so worried that he can not even come straight out and just ask how you are. It really upsets him. But, I know he really wants to know…It’s just terrible that the disease has come back. I hope you can keep it in remission longer this time if not forever. What do the docs say about that?

I write:

Dearest Sweet Pea, I hope I can, too. What do the docs say about that? I don’t ask. I have lots of reasons to believe it won’t come back. They are my secrets, and I hold them close.

Terrible is one way to look at it. But I don’t really give it that much power. It is something that happened to my family and me. And then it came back. It’s what ovarian cancer does.

The truth is, I’ve taken more goodness and beauty from this disease than it has taken from me.

My experience of life is richer and more peaceful than ever, and I wouldn’t trade that for anything. Of course I wish I were healed and believe that I am, on some level. And of course there are moments when I break down and mourn over the possibility that I could die from this disease. But these are brief moments of suffering. And then they pass.

I believe that the majority of people suffer more than I do on a day-to-day basis. Because they’re sick of their jobs or their spouses.  Because they feel like they haven’t come far enough in life yet. Because they don’t like their bodies. Because they don’t see how beautiful every moment of this life is or how precious the people in their lives are. Because they don’t feel the love that flows to them from those people. Because they focus on what is wrong.

But that is not where I dwell, so I’m not suffering, or worried, or sick. So please don’t worry.

I love you two tons. Let’s see each other soon. And when my treatment is done, go dancing.

Hugs,

Jennifer

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Yesterday, after chemo, we unfurled Little J’s new slip-n-slide and discovered it was a deluxe  dual-lane race slide with a checkered flag at the end. Perfect! We’d been talking about checkered flags all morning.

Yesterday’s treatment marked the turn around the half-way bend in the road. I now have more treatments behind me than in front of me. And YES!! My numbers continue to plummet. The CA-125 is down nearly another 80% at 25, which is, WNR (within normal range). Fabulous.

I still have Thursday’s dose, then two more rounds, but I can see that checkered flag already. Can’t you? Flapping in the wind, welcoming me back to remission.

The camping trip was a huge success, more on that tomorrow.

Hugs and happy weekend!

Jennifer

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A Bigger Splash, David Hockney, 1967

On Wednesday, Little J walked into our bedroom after his swim lesson, and suddenly I saw him as this kid who’d grown up while I wasn’t looking. His sun-bleached hair in his eyes, his tanned skin, his hoodie zipped half way. The smell of chlorine. I was looking ten years into the future when he’ll be this tall, athletic teenager who walks around without a care.

“Mom, I have somesing to tell you. Your are going to blow away by this.”

And then he was little J again. I pulled him into my arms. I could feel the sunshine lingering on his his cheeks, his warm back.

“What is it, my sweet?”

“I passed the swim test at the club.  I can go off the diving board now.”

I look at Dennis for some confirmation. This seems far fetched, coming from the kid who was barely dog paddling last week.

Dennis nods, all grins. Proud papa.

“That’s amazing!” I squeeze Little J tight, trying to picture him full-out swimming, and honestly I can’t.

There have been patches of this summer that have gone by, small bits of time, two weeks, one week, where I’ve been flat out with chemo fatigue, and Little J has unfurled a whole new part of himself. Then during my week off, we spend every second together, and I catch up. This was one of those times.

We took J to Finn’s to celebrate the completion of his swim lessons and his diving-board test. He doesn’t want to go off the diving board, by the way. But he’s ready if, for some reason, he has to. He told us this over dinner, during which he ate two meals from the kids’ menu.

And after polishing off his sundae, he hands me the cup of crayons and paper. We’re ready to pay up, but he wants me to draw him a picture first.

“Mommy. Draw a pink castle because that’s your favorite color. And draw you as the princess inside.”   I do.

“Now draw daddy as the prince, and he needs a crown and a big, big sword.”   I do.

“Now draw the super-hero kid flying over everything with a giant knock-out-punch fist. In case the other people can’t kill the dragon, and he has to.”    I do.

He thinks it’s perfect and is finally ready to go home. He doesn’t want to have to kill the dragon himself, by the way, but he’s ready, if for some reason, he has to.

Today we’re celebrating Little J’s birthday with a small group of friends, and tomorrow we’re headed off for our first camping trip as a family. I’ve never seen a happier, more excited kid. And the fact that he didn’t have me draw this dragon that he might have to tangle with is giving me hope that his summer is as carefree as we’re trying to make it. Hope yours is too, so far.

Hugs,

Jennifer

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Photo by Monica

Here’s me geeking out in my customized Edward Cullen t-shirt on the way to see Eclipse this morning at ten a.m. I wanted to sneak it in before chemo tomorrow. I had to wear the shirt. I was in the mood for fun and fun was had. In fact, I’ve been feeling so great the last few days that I’ve been saying to myself and others, “If I could just feel like this every day, I would never want anything else in life.” What else could be worth wanting?

And then later today, things got a hundred times better. I met with Doc G (Not in the Edward shirt. Sorry girls, I just couldn’t.) and he told me my CA-125 had dropped from 600 to 100 in 21 days. I believe that is an 83% decrease, but you might want to check my numbers given my track record with accuracy (Katrina :-) ).

Hooray is not a big enough word. FANTASTIC!!! is much better.

We are so happy here, so so happy. So now I feel so good AND I know that the battle is nearly won before we are even halfway through the fight.

More than likely, we’ll continue all six treatments in spite of what Doc G is calling my “remarkably quick response.” But it’ll be easier to cope with all the ugh that goes along with the treatment knowing that things are going so well on a cellular level.

When I emailed the news to Dennis at work, his heart swelled and nearly burst with gratitude. In fact it blocked the sun for a brief moment. The second eclipse of the day. The gratitude eclipse of the sun. Did you see it?

So, I may not be able to go to the world-famous Company 4th of July picnic, but  I will not miss the Sugartown parade, and I will watch some fireworks on TV. I will imagine they are big, bright bursts of THANK YOU to the universe from our family.

Hugs,

Jennifer

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Photo by Monica

The Sugartown Gang was in full effect yesterday. They swam in Heather’s pool from four until after nine, with one tiny break to nibble on food.  Their energy is out of this world, their laughter, vervacious™ enough to keep the planets in alignment, their goofiness…there are no words, not even made-up ones.

Heather hosted a bbq at Summer Central on one of what I’m calling my “furlough” weekends. It’s one of the four weekends this summer that follows a full week without chemo. That means it’s a weekend for as much fun as can be packed in. This weekend past was a furlough weekend, and I’ve got two left before kindergarten (omg) starts.

This weekend was one for the record-books. On Saturday I watched England lose (completely unfairly) to Ghana while the boys hunted for bugs in the garden. Then we went to John and Eddy’s in the East Bay and spent most of the day on the deck, gazing across the bay at what might have been San Francisco underneath all that fog. They’re babysitting a gorgeous little puppy, whom I was so worried Little J would fall in love with, but instead, I fell in love with. How could I not? He fell asleep right in my arms.

On Sunday morning, we took Little J to his swim lesson. It was the first time I’ve been able to go. Believe me when I say that sitting in the shade and watching little J have a lesson, then swim with his daddy for an hour is nothing less than full-on bliss. Just that. Just sitting and watching, comfortable in my body, loving them so much.

It’s tricky, this summer. There are eight weeks left. On the one hand, I want it to last forever. After all, did I mention Little J starts kindergarten at the end of it? And on the other hand, if when things go right as planned, I’ll be done with chemo by September 8th. So I kind of want it to go quickly.

Luckily, the only thing I can do is stay right in the moment, because each one is so different. Perfectly happy and energetic one day, curled up in pain and fever and oh-my-God-are-we-going-the-M*A*S*H* unit-ER-the next.

Today is happy, healthy, strong and grateful. And now I must go. I hear the vuvuzelas calling me. Go Braziiiilll! (Sorry Jon in Chile. Please forgive me for that one).

Hugs,

Jennifer

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Why so smiley? This morning, before chemo, I found out that my CA-125 is down 200 points. That’s a 25% decrease after the first round. Hooray is in order. HOORAY. The doctor who was filling in for my regular Doc G, started the conversation with, “You’re just a baby!” and “You can’t possibly be 40,” so I was already chipper when he said, “Now I have some really good news for you. This regimen is working. It is working.”

Thank God and everyone out there who is praying for me and sending good thoughts.

On top of that, chemo was a breeze with my new fancy port. I’m telling you, it’s going to be a great summer in spite of the C.

D and I got home in time to see Little J and share the news with the neighbors before J had to be ushered off to his big “Preschool Graduation Party” where there will be: a treasure hunt, a jumpy house, a candy walk (whatever that is) and pizza.

So we’re all celebrating tonight.

Oh, and my hair has begun to shed, which only means I’ll be sporting a look similar to the one above this summer. Ah well, I’d trade my hair for the news I got today, easily.

Cheers and hugs,

Jennifer

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Guess who had an amazing weekend.

On Sunday, Dennis took Little J fishing at a stocked lake north of Sugartown. J caught five fish and was beyond proud of himself.

Those cheeks are soo kissable.

I stayed home to rest and read poems by Dan Whyte, a new book Ryan sent which seemed to be written for me, for that exact afternoon.  Not just this/aromatic cup/from which to drink/but the flavor/of a life made whole/and lovely/through the/imagination/seeking its way.

Try as I did to wrap myself in the perfection of the lines, symptoms started to pile up quickly and out of the blue. I couldn’t get out of bed and just gave into the heave of it.

When the boys got home, the burst of excitement from “the catch” revived me. Little J was beyond thrilled and ready to go swimming. D took him to the pool, and they cooled and splashed for hours.

That night, as little J shoveled down pizza, D called the on-call doc. There was just too much turning toward the worst: nosebleeds, swelling belly, etc. We were ordered to the ER. Neighbor Debbie came over in her cloud pajamas (because she is an angel) and held the fort, comforting little J who was so tired from his thrilling day, but still processing that mama had to go to the doctor at night.

Hours and hours went by with blood tests and hydration and x-rays and waiting, and D telling stories of  “the catch” and trying to stay alert and focused on getting home. The news was just that the chemo is really, really taking a toll. Blood Pressure 70/55, platelets 30, etc. etc. And with the swelling and the pain, it’s just about having a cancer that takes over the belly. It’s either the chemo getting in there and working, or something else. We’re going for the former. We were released near midnight and raced home to shower little J’s sleeping cheeks with kisses.

Memorial Day was better, much better. Christina came over with magical Austrian bone soup with marrow dumplings. “This broth is my mother’s medicine.” I sipped it on the back deck while we talked of angels and the wind whirled around us. Then she cut my hair short, like last time. Really short. When she left, I felt so renewed and my spirits lifted.

After a long, peaceful nap, neighbor H invited me for tea in a new little space she created in her backyard. “A little Zen place behind the lemon tree I want to show you.” It was so lovely to just sit out there and sip some Earl Grey and smell the lemon tree flowers while she talked about her garden, her boy’s new teen-ish ways, and the coming summer.

In the evening, D made his famous ribs, and we had neighbor D and her husband T over. Ribs, the trout that J caught, and talk of easier times when D and I traveled to Australia, got engaged, and lived like hopeless romantics. Later, texting with Ms. Miller about love, I realized D and I still live like romantics, but not hopeless. Hopeful. If love is what’s needed for what’s bad to go away, then the three of us: Little J, D, and I are in good shape. In fact, we’re blessed.

Dennis’s mother, who passed away on Memorial Day when D was eighteen, would be so proud of her son, the way he cares for his family, the way his heart is so open. The way he draws such good people into his life. The way his son beams and beams with inner light.

A memorable weekend. Difficult and full of blessings at the same time.

Hugs,

Jennifer

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Believe

Little J applying forty pounds of pressure.

Those of you who know me, who’ve known me since J was born especially, know that I believe in this kid. Behind gritted teeth, when I see J climbing something too high, I tell him to hang on and that he can do it. Okay, fine, sometimes I have to turn away. But I don’t stop him. Usually, I egg him on. Sure, I’ll stop him if he’s trash-talking kids like Charles Barkley on the playground. In spite of rolled eyes, I’ll step in. It’s a behavior he learned at preschool and we’ve been trying to break him of it for years. Other than that, kid’s on his own.

But STILL! When he announced on Sunday that he wanted to ride his bike with no training wheels, I hesitated. I wanted D to loosen them a bit so J could take it slowly. I didn’t want him to scare himself and then never want to try again. Fortunately D overrode that idea and went ahead and took off the wheels. And with a little bit of help, little J was off. Just. Like. That. He said he was going to do it. And then he did it.

Neighbor M had rounded up the kids to come watch. Then little N ran home to get his parents, and soon we entered one of those moments when time on my street stands still. The  scene turns into something straight out of a story(book). The adults are clapping and cheering him on. The kids are running and shouting. The dogs are barking. And my heart is bursting. I will never, ever forget it. (And T recorded the whole thing on his iphone. Email me for the youtube link if you wanna see the action).

Believe. I’m the first one to shout that word at anyone who’s worried/complaining/fretting/stressing over anything. You have to believe something’s going to happen before it can happen. Period. Little J knows that. And he reminded me at a perfect time. I thanked him for that reminder in the way that’s most meaningful to any Cooper boy:  ice cream. The friends came over, and they all dug in.

Yesterday when I was getting rolled through the PetCt scanner, I just kept thinking of little J’s face when he saw us cheering him on. Bursting with potential and so proud. Everything in his body said, you ain’t see nothing yet. Damn right, little boy. Believe.

Hope you’re having a gorgeous week.

Jennifer

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