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life

another change

Mark and I just returned for the very swanky new cancer center downtown with not-so-swanky news.

The nodules in my lungs are still growing. Slowly.

So, time to change drugs again. This time it’s IV chemo and from here on out any meds I have will be IV, so I also need a port.

Chemo starts tomorrow. But I get to have my favorite nurse, Beth.

I will be on two different drugs:

Gemzar: The new chemo. I will get this drug IV every Tuesday. It’s a short IV, about 45 minutes. Side effects do not typically include hair loss or nausea.

Avistan: This is a new drug and has been very effective. It essentially blocks the creation of new blood vessels (which cancer tumors rely on for nutrients for growth). It has no side effects to speak of, but also aids in the efficacy of chemotherapy delivery. This will be administered IV every 2 weeks, but possibly won’t start until after I have a port since it makes it harder for wounds to heal.

And, yep, I’ll have a port. Permanently. Yuck.

As for me, 30 minutes after leaving the cancer center, I feel fine. I’m ready to go about my day. I feel no need to make exceptional plans, just manage my schedule with school things starting up this week. I’m feeling normal. And determined to hold onto that feeling. On that, I could obviously use a little help.

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life

good-bye, Burley

burley.jpgIt was 2006 and the news of my metastatic disease had been sinking in for at least a month when I was having coffee with my friend Allison. I was talking about what might help get me out of my funk and out into the spring and summer. I wondered aloud if I should get a bike trailer. Perhaps, I mused, that would get me the proper exercise while having quality time with Zoe.

Apparently, I wondered aloud to the right person. Less than a week later, a Burley bike trailer was at my doorstep courtesy of Allison, JD, Paul, and Kristen. I was blown away.

Zoe and I put miles and miles on the Burley. We took friends to the park. Zoe chatted at me incessantly from her wheeled chariot: “Why are you breathing so loud, Mommy? Can’t you go faster? Is it because we’re going up a hill? Hey, Mommy, why aren’t you answering me?”

The blonde four-year-old who accompanied me on these rides has now become a leggy six-year-old who balances ably on the tag-along Grammy and Bumpa put on my bike. I have remained healthy enough to keep on biking, running along beside Zoe as she learned to ride without training wheels. It was time for the Burley to vacate the garage to make room for new, health-affirming toys.

Today the Burley went to it’s next home. My friend, Sue, received her cancer diagnosis shortly after the news that she was pregnant with her second child. After her daughter’s healthy delivery, she went through chemotherapy (with my beloved nurse, Beth). This summer she celebrates the word “remission” as the fuzzy hair grows on her head. She and her two blonde daughters will make good use of the Burley.

Sue’s gratitude when I dropped the Burley off looked just like mine did 2 years ago. My only instructions to her were to pass it on to another eager new-lease-on-life parent when the time came. And I’m certain that time will come for her as it has for me.

The back of the Burley has a small heart on it. This is in honor of JD and Allison’s son, Caleb (whose name means “strong heart”), who was born directly into heaven a year before Allison’s own cancer journey. At Caleb’s funeral, J.D. encouraged us to do something new in honor of Caleb. This bike trailer was part of my something new to honor Caleb. And, now, it’s off to enhance someone else’s “new normal.”

Thank you Allison, JD, Paul, and Kristen. And Caleb. The love just keeps on rollin’

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life

a great big ball of love

heartIt has been at least a year since Zoe and I were driving in the car and our silence was broken by Zoe saying, “Raise your hand if you think I am a great big ball of love.”

I raised my hand.

Over a week ago I celebrated my 37th birthday (yahoo!). I went to bed that night having been surrounded by love all day. A latte in bed in the morning, breakfast made by a dear friend, lunch made by another, truffles delivered by yet another, my parents taking us out in the boat and coming over that night with a card and a frozen pie (a long story on that family joke) and so many other cards, gifts, etc. etc.. I was overcome.

As I waited for sleep, what ran through my head was the line from the hymn “For the Beauty of the Earth.” It was: “for the love that from our birth over and around us lies…Lord of all, to thee we raise this our joyful hymn of praise.”

I felt as though on my birthday 37 years before, my parents had packed me tight full of love, like a well-packed Michigan snowball and had slowly built that ball until it was big enough to roll on its own. And ever since it has been rolling it has gathered impossibly more and more as it has rolled until now it is/I am “a great big ball of love.”

I can only hope that Mark and I pack Zoe good and tight full of love before sending her on her way. And I hope she’ll always raise her hand when asked to confirm that she is, indeed, a great big ball of love.

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life

Mark and maps

When the New Yorker arrived in the mail yesterday, I wondered if Roz Chast had been on our family vacation. Mark had studied copious maps before our arrival in Manhattan, but when called upon to use his knowledge amid the towering infrastructure with testy family in tow, well, he choked. Poor guy. This is Mark navigating Manhattan–seems Roz just can’t cut the poor guy a break!
newyorker

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life

the big apple

We just got back from our first family road trip. To New York City.

It was great fun. In four days and three nights, we took on Manhattan Meyer-Turner style.

This was Zoe one minute after arrival. arrivalShe was a natural.

Other highlights pictured below are:

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The “whispering corner” at Grand Central Station…Central Park…Mary Poppins on Broadway

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our tour guide at the Central Park Zoo…Harbor Tour…NBC studio tour

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The New York Public Library…the mineral exhibit at the Museum of Natural History

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and my new friend Steve Carell.

Rabbit’s favorite part?

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The luxurious transportation and…reuniting with the people who gave Zoe her best friend.

Scott and Kelly, thank you for being our gracious hosts before and after NYC. And Mom and Dad Turner, wow, what a gift! We’re almost ready to hit the road again! Well, after my blisters heal, that is.

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life

kindergarten fun

Zoe’s had great fun in kindergarten lately (as usual, really). Last week was the letter people parade and Zoe was “Z”. Here she is in costume…

z 2z

And today the class dressed up for “olden times.” They’ll be visiting an old schoolhouse and playing “olden time games.” Zoe is sporting a Holly Hobby dress I used to wear to church. Since my mom doesn’t get rid of much, Zoe’s dear friends Vera and Lucy were also outfitted from Grammy’s attic. They were delighted.

olden 3olden 2olden

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life

kinder, gentler chemo

Our visit at the oncologist this morning was…OK. The tumors are still growing. Slowly.

So, switch meds again. Mark and I (and many of you!) had braced ourselves for the chemo mentioned during our last visit. And chemo it is, but not like before. I’ll have an oral chemotherapy that is FAR gentler than the “shock and awe” chemotherapy I had in 2003-04. I can’t remember the name of it and I dropped off the prescription, but it starts with an X.

The side effects are mostly on the skin. They do not, I repeat, do not include hair loss or nausea. So, Mark will have a spouse this summer–rather than a shadow of me walking around the house in my pajamas (crying) bringing back images of chemo past. And Zoe who will have a mom to play with. And really, that’s all we really wanted. For me to stay me.

We will find out in a few months if this medication is effective. If it is, I will stay on it as long as it remains effective. We’re hoping for years.

Mark and I are so grateful for all of the prayers that have been offered on our behalf. When we are tossed between anxiety and peace, your prayers anchor us. Thank you.

And now, I’m off to get some attention paid to the hair I’ve neglected thinking it would be headed down the drain. Hey, if I get to keep it, I better be nice to it!

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life

childhood 2.0

I’ve commented plenty here about raising Zoe in my own hometown. The skating party at the same (un-redecorated) rink, the swimming at city pools, the ballet class in my former kindergarten room. In many ways, Zoe’s childhood looks a lot like mine.

Except there are these upgrades. We go to the same Festival down by the Calder, but Zoe gets to buy actual ice cream treats…

festival

We go to the fireworks downtown for the 4th of July, but the same people who raised me now spring for private seating at the museum and buy the glow in the dark things that last all of one night (who are these people anyway, and what happened to my parents?)…

fireworks

And, the latest upgrade…we go to the Tulip Time parade (which I once watched in the pouring rain with a trash bag on my head) and Zoe sits on a stool on a second floor balcony looking down at the parade below courtesy of the connected Uncle Chris…

tuliptime

Childhood 1.0 would never recognize this newer version. Don’t even try to send it Zoe’s files. It simply hasn’t the bells and whistles required to process it all.

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life

Asheville

Last weekend, Becki and I celebrated…weekend

Becki’s friend’s dentist, in an act of unbridled graciousness, let us use his lovely home for our annual getaway. Asheville, North Carolina.

Becki and I spent the weekend doing the usual–laughing, thrifting, and sipping coffee (see cool double-decker bus turned coffee shop below).

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boiled peanutstwicelaugh

We also hit a few new highs (or lows depending on your perspective)–thrifting by the pound and dumpster diving. I even let Becki attempt to color my hair–though the risk of this is lost on anyone who did not see my tri-color hair in 1990. It’s no coincidence it took 18 years for me to trust her near my roots again.

goodwillhairdumpster

It was, as always, good to be with Becki again. We are, somehow, flip sides of the same coin and being with her offers me a unique sense of completion. The next time we’re together can never come quickly enough.
both

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life

ante bakey

Zoe fell completely in love with my sister when she came for a rare solo visit to our house 4 years ago when I was sick. Then, the 20 month old Zoe who rarely let anyone hold her would run in front of Becki, turn to her with her arms up and say “Uppa Becki?”

This weekend Becki had another solo visit. This time for Dad’s retirement Open House. She stayed with us and the love affair between the two was renewed. Zoe giggled for hours straight.

Below is a photo of the crazy pair–and a picture that Zoe did at school today depicting the leg-slide she and Becki came up with during one especially silly time last night.

Now we don’t know who is more fun, Ante Bakey or the whole Veal family!

ante bakey
picture