May 2010

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Heather in Mary's hands

It’s not even noon and today is about thanking so many people for just making today so good.

Thank you Mari for your company and buckets of pho.

Thank you Sandra for being one text away, always.

Thank you Christina and her Mama for authentic Austrian bone marrow soup for Monday.

Thank you Amy for your delish bone soup today.

Thank you Lori for being there at the ready, all the time.

Thank you mom and cousin Esther for your prayers, and everyone else.

Thank you Debbie for taking our little J today who’s got a day off from preschool.

And thank you Monica for sending this picture along to show that the day is already off to such a good start.

We are all three feeling so cradled and cared for by everyone. It’s a good day.

Hugs,

Jenn

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From Felicia Cago's blog

I’ve been craving bones, unbeknown to me.

I’d been dreaming of the perfect bowl of pho since chemo last Tuesday and then again last night, after round two. When a friend asked what pho was, I discovered it’s a Vietnamese bone soup. When pho broth is prepared traditionally, chicken bones are boiled and browned for hours, leeching valuable minerals from the marrow right into the broth.

I’ve also been craving bones unbeknown to me. Last night I thought of the amazing chicken-bone soup my friend Amy made me back in 2008. I swear the stuff is magical. You stir in a little sherry so it goes down smoothly, and voila: rosy cheeks and a happy tum replace vampire jowls and a bloated, empty stomach. Lucky for me, as I write this, Amy is brewing her magic broth for me just across Sugartown.

But my strange craving is also being fed by Ms. Miller who, totally unaware of my osteo-obsession of late, cleaned, dried, and giftwrapped a sweet package of tiny chicken wishbones and sent them winging my way. When I unwrapped them, James held one up and asked, “What is this?”

“A talisman,” I answered. I’m going to make a mobile of sorts from the wishbones, but first maybe dip them in glue and cover them in what, glitter? sugar? tiny white feathers? A wishbone mobile. A talisman for the strength of bones and good luck. Little perches where angels can alight in the night, while we sleep.

So Doctor G met with us yesterday morning before treatment, and the whole bone theme came into sharper focus. None of this is any coincidence, it turns out.

“So the marrow of your bones is very sensitive. Very sensitive. Your white cell count was blahdy blah, and one week later it is now blahdyblah. That means your risk for infection is really high. But we need to move forward with treatment, so you’ll get a shot of Neulasta tomorrow which will stimulate your sensitive marrow to make more white cells. Which you will feel. Because of your sensitive marrow. Do you remember if you could feel it last time?”  “Yes, we call Neulasta ‘the bone crusher’.”

The very good news is that there is a ‘bone crusher’ shot. I can’t help feeling how grateful I am that I can continue treatment in spite of my sensitive bones, that they can just use the ‘bone crusher’ to boost my marrow and keep going. It’s a blessing.

And the day in the chair yesterday? It wasn’t a breeze. I always say it was a breeze, because it usually is! But this time it was not. My veins(!) it seems, have also developed a sensitivity to the chemo, as well.  Stingy, achy, burny, two different tries of two different veins, and finally got it working pain free. Phew.

Toward the end of the day, my favorite nurse came in and she and D and I talked about having a port put into my chest so they can leave my poor veins alone. It’ll be like Iron Man’s, but no light, and off to the left, near my collar bone, smaller, and more discreet. It’ll be under my skin, no tubes coming out of it, just a little bump under there like an extra bone, or a secret power.

So now, we get two weeks with no chemo. Just us, the bone crusher, my bone soups and the making of my wishbone mobile. Then the port goes in if my white cells are up,  on Wed June 10th, then chemo again on the 11th.

After treatment, D and I drove home in the rain last night,  processing all this. The good, the difficult, the amazing care we get from all our doctors and nurses. We wondered if Little J was doing okay with neighbor D who had graciously picked him up from school and taken him that afternoon. We’d heard she was going to take him out with Little T.  And just as we were thinking of them, neighbor D sent us this picture:

Driving the Cart at the Grocery Store

It was perfect timing.

Hugs and healthy bones and smooches to you,

Jennifer

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The weekend in the trenches is best left un-discussed. Let’s just say if discomfort is any indication, the ditzels are turning to empty, burned-out craters. But thanks to D, who did EVERYTHING this weekend while shouldering a rucksack of concern the size of Montana, Little J had an awesome weekend.

Ice cream Friday (above) was followed by Hot Tub Saturday:

and Gardening-with-Daddy Sunday:

We are hanging onto these sweet smiles while battening the hatches for dose two tomorrow.

Hugs,

Jennifer

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image from from surflikeagirl.net

The sun’s out today, which puts a smile on all our faces. Also, the pain and nausea mean that stuff is working. The pain means the ditzels are getting annihilated, and the nausea means the chemo is doing its thing. Thank God D was here to dash out and get the strong nausea drugs so I could eat yesterday.  It was a long and hazy day fueled by saltine nibbles and an “America’s Next Top Model” marathon.

By the afternoon I felt swell enough to watch little J and his friend we call ‘Lil Salty, tear up the driveway on their scooters while I sat and had tea with Salty’s mom.

In the evening, I had an email from my big brother. It said, “You can do this.”

I felt a quickening when I read this. The same sentiment, coming from everyone around me, takes on a certain added umph when I hear it from him. In fact, I feel a few more ditzels perish as I read it again.

When my brother says I can do something, there is a mandate, a no-other-option implied. Like when I was ten and he finally agreed to let me skate with him at the skate park. I was not to embarrass him by wimping out. I stood at the lip of the concrete bowl, my tube socks pulled up to  my knees, my glasses, braces, scraggly hair: embarrassment enough. The concrete slopes rushed up at me.  And off he went, smiling, laughing, tucking his body, and with a little swagger, assuring me it was the easiest thing imaginable. And then I followed. I did it.

Or the time we kicked on our boogie boards way too far out, past the coral barrier, toward the “really big waves” on Oahu. “We’re too far! We have to go back,” I’d yelled, barely audible across whitecaps, salt on my lips.

“The only way in is to ride one. I’ll get this one. You take the next. You can do it.” So I did. There really was no other option.

Or the time we floated in the blazing sun down the American River for hours. Two skinny, tanned teenagers in bathing suits on inner-tubes. Not. A. Care. Floating.

After too long of a while, I realized how far we’d have to walk back in bare feet along the brambly side-water, in the fading sun. In the land before cell phones.

“Whatever. You can do it.” And I did.

Not to say I wasn’t terrified, hurting, and sometimes a little mad. But I just did it, because he said I could, and because there never was another option, except maybe to sink into a puddle of tears and defeat. Instead, I just pushed on. As a consequence, I felt stronger in myself and trusted him more.

I like to think of this challenge as no different, though he’s not going first to show me how laughably easy it is. I know he would if he could, if not just do the whole thing for me.

Hugs,

Jennifer

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Day one went well yesterday. The six hours in the chair flew by somehow. They didn’t prep me with IV Benadryl which would normally “snow” me out for the whole time, so it was the first time I was awake, lucid, chatting with some of the other ladies. D was there, working when he could, holding my hand, making me laugh.

Later that afternoon, J got the special treat of snuggling into bed and eating a small bounty of his favorite gum-drops while listening to a “Virgil Story”. Virgil, our cat, gets up to lots of adventures while little J is asleep and at preschool, so each morning, he gets to hear about the adventures as I piece them together from the best of my recollection. The adventures often involve the other animals and children in the neighborhood, flying beds and play structures, and lots of good vs evil. Yesterday morning, there’d been no story as I had to leave early. Thus, the afternoon gumdrops and story in bed. Luxurious. Virgil was in attendance to confirm each twist of the plot with a purry nod.

Speaking of Virgil, Little J has been building ever-more comfortable sleeping spots for his beloved cat, right by his food bowl. Protection and comfort seem to be the themes of the project. The boy loves his cat.

Virgil can enter through the port hole on the left and is kept warm by a friend-made quilt for Little J.

Hugs,

Jennifer

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Vintage McCall's pattern

The last time I posted here, my CA-125 (the blood marker for Ovarian Cancer) was up to 19, from its usual awesome 3. Anything above 35 is bad, but for ladies who are in remission, single digits is the goal.

Last week, we found out my number is 353. Yikes.

D was in Europe on business when I emailed him the news from the parking lot of the doctor’s office. It was one a.m. where he was, so I knew it would be about five hours before  I could talk to him. I felt like I needed that much time to gather the strength to hear his voice on the other line, to tell him we had to start chemo again.

I drove the twenty minutes home thinking about how I was going to break the news to my mom who was at home with little J. I couldn’t think of the right words. As it turned out, I didn’t need to say anything. She knew the minute I walked in the door, as moms do. We sat down at the table and looked at each other in shock. The same table, by the way, where she helped me with my math homework, served our family the best dinners imaginable, and planned my birthday parties. We cried a bit, discussed logistics, then got dressed up and took little J out for a burger at our local favorite pub.

While we’d been talking, D’s Blackberry had beeped him late at night in Stuttgart. He packed and gotten in a cab. Before we’d walked out the door for Finn’s Pub, his assistant had gotten him on the next flight for SFO. (Thank you forever, Amy.)

Since then, I have been scanned (again!) and am now assuredly visible from space: a warbly green radioactive glow in the outline of a woman’s body, her two hands held by the bravest guys on the planet, an army of friends and family behind her.

The scan showed a little tumor on my left lower inner side and a “sprinkling” of ditzels of disease on my lower inner right side. The pain is worse than when I was first diagnosed for some inexplicable reason, and the rogue cells are more aggressive than they were the first time, which is hard to fathom given how fierce they were before.

But, as Ms. Miller says, they are a house of cards waiting to be toppled. Treatment starts tomorrow. I’ll be getting a powerhouse combination of cisplatin and gemzar. I’ll get another dose the following Tuesday, a week off, then start again. This will repeat for six to nine sessions, depending on how quickly the house of cards falls.

I know. I can’t believe I’m typing these words either. But here is the silver lining (and it is a thick and shiny one). Because of my BRCA-1 gene mutation, the combo of chemo drugs I’m getting has a very high chance of working. In my mind, it will absolutely work and has, in fact even started to work. The rogue cells are shaking in their boots and stomping in protest. Also, it’s not going to be cold and flu season. And finally, we are all determined to have a lovely summer in spite of this slight inconvenience.

We won’t be setting up a CaringBridge page. We’ll be posting here about our lovely summer: swimming lessons, trips to the beach, and with occasional updates on that other thing.

Love and hugs,

Jennifer

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