Wishes

This year on New Year’s Eve we launched 15 Chinese wish lanterns up into the night sky. I can’t say enough about what a neat activity it was. I want to make it a new tradition, and I bet I don’t have to tell you what my wish was. Here’s to wishes for 2011.

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A New Year

I am ready for a new year! And ready for school to start as well. The kiddos and I have had just about all we can take of each other this week. I love my children, but I can also compare them to little elves and not the helpful kind. The excitement of Christmas is over, Papa has returned to work and suddenly it is just the three of us. There has been lots of fighting, lots of “I’m bored there is nothing to do,” which is infuriating right after they have received a ton of new toys, and just general grouchiness.

But also good moments: sledding, painting, snuggling on the couch in front of the fire. I think my children are very much like me in that they sometimes seem to have trouble just stopping and appreciating a moment- so we all made some progress in that area this week.

Today our son said to me, “maybe papa will get another bump and have another surgery.” I explained to him that the bump is dangerous and I hoped that wouldn’t happen. “Well I do,” he announced, “because then I could play with papa everyday.”

So for next year we need to find some ways to have papa around more often without the bump. And I need to find a way to not beat myself up for sometimes slipping back into my old ways and not always feeling grateful and magical that we have made it this far, but rather feeling like a stretched to the limit mother and wife who sometimes gets bitchy at her man.

So, for 2011 I want: clean scans every three months, and a continued appreciation for what I have and who I am – flaws and all.

Happy New Year

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Happy Holidays

I have been thinking a lot about my mother as I prepare for the holiday. She always went overboard on Christmas- an abundance of presents under the tree  and a trip to Child World the next day for the child who was short changed to make up the difference. I thought of those years last night as I wrapped and counted  and fretted over my own children’s piles and whether they are fair or not.

I remember that several weeks before Christmas suddenly all of the closets in our house were off limits, and today in our home the same is true. When I was older I used to help my mother wrap presents. Some years I even wrapped my own cleverly disguised gifts and never peeked. My kids are obsessed with wrapping right now, and I have to be careful what I leave laying around- they will wrap anything.

I cleaned our home today and it feels quiet and peaceful and smells like Murphy’s Oil Soap. It is the last day of school for the kids, so I am enjoying this peace. My poor man doesn’t get many vacation days ( damn cancer & surgery used up quite a few) so he is only taking off the 24th this year. But I can feel us all preparing to close out the world and be together as a family. I can’t wait to drape the warm and cozy blanket of Christmas over our lives for a few days.

Happy Holidays

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Keep Trying & Crying

Woke up sad today: regretting missed opportunities, a bit of holiday blues, and maybe just the slow release of all the tension that had built up before last weeks scan. I couldn’t help it, so I sat and cried for a while. It was my first cry in quite some time and it was like opening the window to so many emotions that I fight to have under control or deny or whatever, so I can have happy, carefree days.

I am convinced there must be a group of people out in the world, some tribe, who cry whenever they have any emotion, and I bet they are super healthy and happy and have very little stress.

But since I don’t live in that tribe I went ice skating with my daughter instead. We had the pond to ourselves, and I hurried back afterwards to record the sweetness of that activity. A bright spot on another wise sad day spend trying to keep the window tightly shut.

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Early Christmas

We got an early Christmas present today- NED: No Evidence of Disease. It is just what we wanted. On the drive down to Boston in a moment of drama- it was just me and my imagination after all- I thought, “If we have clean scans today-I will make the most well intentioned effort to appreciate everyday of the next three months.” So that is what I am going to try and do.

So to 3 more months of our new normal lives. And Happy Holidays!

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I Had Forgotten

Oh, I had forgotten how inconvenient cancer is. Tomorrow we are back at Dana Farber after a 3 month hiatus for my man’s first 3 month scan. I had forgotten the complicated business of getting everyone’s schedules and after school care coordinated. I had forgotten the miscommunication and confusion when dealing with multiple hospital departments. My man and I thought we were being clever when we made his first scan for  10:15- leaving our selves plenty for time for the 3 hour drive, or so we thought. But Butrynski’s people made the appointment and then CT  informed us last week that although his appointment is at 10:15 he has to be there 2 hours prior to drink the contrast- a contrast that he can only get at Dana Farber and no there isn’t enough time to ship it. I had forgotten just how difficult and time consuming and exhausting and not easy the cancer care can be. And I wasted a bit of time being furious at Dana Farber and my husband: they know we live 3 hours away why didn’t they warn us about this, why didn’t my man figure this out, etc, etc.

And then I recognized that all that anger is really just misdirected fear. When I am scared, threatened, or feeling insecure I usually start to bitch, complain, moan and groan and my favorite: blame others. My man and I  feel confident, but as the clock ticks away the hours to that moment when Dr. Butrynski comes in and gives us our results it becomes clearer how insignificant feeling confident really is.

I have plans for the rest of my week: meetings, kids events etc. Christmas is right around the corner, a New year’s party, our trip to Costa Rica in February- it feels like all of this will  be hanging in the balance tomorrow at 2:00. Scary shit.

But I have hope and I know that whatever happens we can handle it and will. And I recognize that this is the first of 8 scans over the next two years and probably more to come afterwards, so I am getting myself acquainted with this place in the process and familiarizing myself with the subtle ways it shapes our days and ways.

And having said all of that: all I really want for Christmas is this cancer never ever to come back but let’s start with a clean scan tomorrow. Send us good thoughts.

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Moving Past

I met a woman the other day whose husband also has cancer and is also a patient at Dana Farber. We sat there nonchalantly swapping stories as easily as if we were swapping recipes. Her husband has been battling Lymphoma for three years and is in the midst of his third recurrence. “People always tell me to count my blessings,” she added, “but sometimes you have to mourn your losses.” I told her of my man’s sarcoma, his treatment to date, and the years of scans to come. “It has a high rate of recurrence,” I explained. She smiled, ” I read about Sarcoma the other day, I didn’t want to be the first to tell you that.”

Oh don’t worry, we know. We know about the shitty statistics- we know and we are OK, (what else can we be). I have counted my blessings and mourned my losses all very publicly here on these pages. But if you haven’t noticed I have had less of an urge/need to write lately. I am no longer freaked out all of the time. I am not even freaked out that I’m not freaked out. In the words of my new favorite band: “sometimes I can’t believe it, I’m moving past the feelings.”

I wanted to officially explain my absence from this space. It has helped me immensely over the last six months and I am sure I will be back now and again. But cancer is taking a back seat these days and I’m gonna let it.

I will update after December 14th to hopefully share some news of NED (no evidence of disease.) Thanks for reading/listening and happy Thanksgiving.

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What if

Last night, while I lay thinking here,

Some Whatifs crawled inside my ear

And pranced and partied all night long

And sang their same old Whatif song:

Whatif I’m dumb in school?

Whatif they’ve closed the swimming pool?

Whatif I get beat up?

Whatif there’s poison in my cup?

Whatif I start to cry?

Whatif I get sick and die?

Whatif I flunk that test?

Whatif green hair grows on my chest?

Whatif nobody likes me?

Whatif a bolt of lightening strikes me?

Whatif I don’t grow taller?

Whatif my head starts getting smaller?

Whatif the fish won’t bite?

Whatif the wnd tears up my kite?

Whatif they start a war?

Whatif my parents get divorced?

Whatif the bus is late?

Whatif my teeth won’t grow in straight?

Whatif I tear my pants?

Whatif I never learn to dance?

Everything seems swell, and then

The Nighttime Whatifs strike again!

by Shel Silverstein

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Nice Days

We went for a night walk last night. Everyone was feeling a bit restless in the house, so out we went. It was fun. “What a great memory we are making for our family,” I thought as I watched for shooting stars. We had head lamps and flashlights and even passed another head-lit couple on our way. “Didn’t expect to see anyone else, ” smiled the women as she passed. We didn’t expect to be out there, it was a happy exception. Of course things deteriorated instantaneously when we got home. Our son has a mild case of Hand ,Foot and Mouth which means- this week he is Dr. Jeckyl and Mr. Hyde and his Mr. Hyde is scary. I feel for him: he has little sores in his mouth and can’t really eat.

But even the difficult bedtime didn’t ruin the walk. We were still happy to have done it.

This is our second quiet weekend at home in a row and I  am really enjoying them. We have been hard at work on the lawn again, and with such gorgeous weather, I am happy for the excuse to be outside.

I celebrated with some friends the other night. I got a new job and am looking forward to exploring my career a bit more.

On Veteran’s day I spent the day with our daughter. A girl’s day. We went to  Target and out to lunch- a pasta restaurant: her choice.

In so many ways life seems much fuller and richer on this side of the cancer mountain. And for that I will always be thankful.

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A Dream

I woke up in the night last night and couldn’t get back to sleep. I lay in bed my mind whirring away- picking at every little thought and action of the day. I eventually fell back asleep and had a strange dream that our neighbor (with whom I am not very close) hugged me out of the blue. When I asked him, “why are you hugging me?” He answered, “because I like you, and everything is going to be OK.” The dream is sticking with me.

When we first moved to our new home, I targeted these neighbors as potential new best friends. But things were doomed from the get go. The first time they invited us over for dinner, I was so eager to start our new friendship that we went even though our daughter clearly had a fever. I learned my lesson the hard way: she vomited all over their living room 5 minutes after we arrived. We rescheduled. That first summer we had several get togethers with the neighbors. They invited us, we invited them, they invited us, we invited them and then- they stopped inviting us. My man and I took it hard at first. “They don’t like us- how could that be, what’s not to like? ” was our general attitude. My husband moved on, but I was hurt and insulted for many months. Let’s face it- rejection at any age and in any form is hard.

I started to care less that our neighbors rejected us when we met people who didn’t. Over the last 3 years we have built our own community of friends, so I no longer need to sit in a darkened room peering out at the party across the street wishing we had been invited.

Perhaps my dream was prompted by this blog. I love the name, “Don’t waste your cancer,” and its message- cancer is a wake up call. Last night as I lay awake analyzing my life it occurred to me that perhaps my recent moodiness has something to do with this sentiment. I am a harsh judge of myself and now I get to add to the list of personality traits I am constantly monitoring and grading whether or not I am ‘awake’ enough after such a narrow escape. And I get to grade my man on it too.

We have now completely fallen back into our normal routines. And I think I have been giving us a failing grade for that and it has been pissing me off. Its a struggle- this summer all I wanted was normalcy and now it is here, as if my man was never diagnosed and that doesn’t feel quite right either.

I am not sure how this relates to my dream but they feel connected in some way. Plus I’m not grumpy anymore- although I did get slightly miffed when my man asked me if I was grumpy 10 times last night even though I wasn’t.

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