Friday, November 30, 2007


"Well I'm searching for somethin'
That I can't reach
So I whisper your name
In my sleep.
'N time isn't giving me,
The space that I need.
But you know at this pace,
I don't think I can pull into the lead."

It is too much for one person to handle -- cancer, the battle against death; watching helplessly as your child, the being you'd give your very life to protect, suffers with nothing you can do to stop it. And yet, here I am -- and here we are. I don't know how we did it, and I don't know how I'll do it again if some future scan brings us back into the darkness. If this experience has taught me anything, I am clearly aware that all I have -- indeed, all that any of us have -- is this moment, right now.

In this moment, I'm tired. The aforementioned struggles have been fought while I still get up in the morning and go to work. My job is demanding, but I love it -- I love it enough to let it take me from my family 8 hours a day, 5 days a week (sometimes more).

Finally we return to something that looks vaguely like the life we had. There are still many questions needing answers, but there is a familiarity returning to the day-to-day on my end. Yet, I can feel "it" still within me. It's is in the clenching of my jaw when someone shares their relief that the nightmare is "over". It's in my throat every time I look at a recent photo of Vampboy at school, when I feel as though I may burst into tears right then and there. It's in the fear that crosses my mind in the darkness of the night, as he snuggles next to me looking for a safety he doesn't realize I can't actually provide.

"Cause I can't carry this around any more,
It's getting heavier with age.
It is the boulder in my stomach.
It's the avalanche in my veins."

What is "it"? It's what this experience has done to me. I am the classic "hero" -- willing and able to stretch myself to the breaking point to save the world, all the while functioning on fumes and a healthy dose of denial about how sad, angry or messed up I feel inside. I am also keenly aware what happens to heroes if they don't take their time to fall apart. It would be easy for me to bury myself in my fantabulous job and fill every waking moment outside of work running errands, making dinner, putting Vampboy to bed, visiting friends and family, etcetera, etcetera. Then, eventually, what is stuffed neatly in a corner of my heart would escape from its cage and tear me apart, along with anyone within a mile radius of me. I know better than to allow it to get to that level. So, since it looks like Vampboy is okay for the moment, it's time for Vampdaddy to take care of his eternal self.

"So let's leave it behind -
I want to bury it beside the road.
I will sit there until it comes out of me
I'll be freezing in the summer desert cold."

I am going off the grid for awhile. In real-life, that means I'm taking the month of December off of work -- most of it, anyway. Vampboy will be in school, Vampmommy will start her own process of regrouping, so my time will be my own to rest and re-charge. I have no big plans -- there will be some yoga, there will be some art, there will be some time sitting around in pajamas, watching some sweeping movie epic while continuing the never-ending task of uploading my entire cd collection to I-Tunes (anyone who knows me knows that this last activity would most likely require a year-long sabbatical to complete, but I might as well start somewhere). There will also be some holiday cheer and family-time, which is always good to approach well-rested.

There will be some writing -- but it will not be here. There are some things I need to document, experiences I need to put down, feelings I need to articulate that are not for this venue. They will find their own home, I'm sure - and I have no doubt that some day they will reach your eyes and you will once again share with me your grace and kindness.

This is my fancy way of saying that "off the grid" also means that I am taking a break from the blog. Not for long -- I expect to have some witty post prepared to kick off 2008. But December is for me, and I'm hoping to let my soul guide me through my own process for awhile. I promise I will break my silence should I have something to share regarding Vampboy's life and journey, so keep checking back -- but no news will be good news should it remain quiet here.

To you all I extend my warmest wishes for a December full of joy for you and yours. I have written before of my gratitude for everyone that has helped make my blog a sanctuary for me, and for the gifts both literal and figurative that you have offered to my family. My feelings on that matter, and for each of you, remain steadfast. I look forward to a return to Vampdaddy in a few weeks with renewed energy, spirit, and fun stories to share about the outcome of Vampboy's ever-growing Christmas list (there's a six-foot tall inflatable snowman on it at the moment).

The journey continues.....
"Somehow we get there,
From wherever we are.
Somehow we get there -
No matter how far"

"Somehow We Get There" by Melissa Ferrick.

Sunday, November 25, 2007

Post-Turkey Haze

It has been an entertaining holiday weekend at the Vamp Lair. Thanksgiving day was a family affair with Turkey in all it's forms -- turkey pot pie for lunch, sliced turkey and cheese for snack, and then the full-on tryptophan-tastic traditional turkey dinner. Yummy! The rest of the weekend has been spent visiting with friends, eating left-overs, and playing games - including the New England favorite of candlepin bowling. Those of you not living on the East Coast have no idea what you're missing!

The next MRI has been scheduled for February 1st. Having a date assigned is an odd feeling -- I guess a reminder that it'll be a long time before C-Camp is out of sight. In the meantime, Vampboy has happily transitioned off all of his medications (except for an anti-biotic he'll stay on for six months), and this weekend we are celebrating the end of his overnight feeds through his MIC-KEY Button. The button has to stay in awhile longer as we wait for proof that his growing appetite isn't going away, but to go through a day without having to "plug him in" for medications or that bland gray liquid is something I never thought I'd see -- much like his hair, which is starting to make a subtle appearance on his shiny little head.

Thanks to all who emailed and shared compliments about VB's Thanksgiving picture. I should note that it was taken by his teacher at school, who has been gracious enough to send us detailed photojournalist-quality reports on his days at "Chez Learning". How she is able to get him to sit there and smile without a "don't take my picture" freak-out is beyond me. It speaks volumes to her talent, and the fact that I think VB has a crush on her. What a player!

With Thanksgiving 2007 a thing of the digestive past, you may be wondering what would make Turkey Day 2008 even better. Might I recommend a Turducken? I friend introduced me to the concept recently, and while I've yet to try one, I gravitate to the idea like drivers slowing down to look at the results of a violent car accident. I mean, who the hell thought this up?

Sunday, November 18, 2007

Monday, November 12, 2007

Master Over My Domain

So, in an attempt to lock-in my cyber-identity, I purchased my domain. So now, if you enter or, you get directed here. Isn't that exciting? I've also decided to purchase my real name. Apparently, I'm only worth about $2 at the moment, so it was a bargain. Don't bother trying it if you know my real name, though -- it won't direct you here. I figured I'd just save it for when I'm a rock star.

On a related note, in case anyone is curious, this is NOT me:

Tuesday, November 06, 2007

The Bridge

When Vampboy was first diagnosed with Cancer, the oncologist who broke the news mentioned at one point that, for many, the end of treatment is actually harder than the beginning.

I now absolutely believe him.

Don't get me wrong -- the return of things like "free time" and "Vampboy's eyelashes" are celebrated milestones that are so indescribably good I don't think I can put it into words. However, the adjustment back into a normal existence is a shock to the system after so much time in Cancer World/Chez Healing. Then there is the added complexity that comes with the knowledge that what we had is forever lost to us -- and that even this "new normal" can be taken away from us at a moment's notice.

So we are left feeling like we are standing on a bridge between two worlds: Cancer World and "No Cancer World". Here's the view from either side:

No Cancer World

My son as a duck!
There are two great things about this photo: first, that VB had his first Halloween in over two years that did not take place in a hospital. And second, that this photo was taken at the Halloween party AT SCHOOL! That's right, VB will return to the land of toddler-studenthood this week, with last week's visits serving as a warm-up.

In the meantime, we navigate explaining to people where the end of treatment leaves us. One person actually asked if it was time to remove VB from their prayer list. They were not happy when I said "uh, no". Since VB will be 3 soon, we have to move him from his current "early support services" therapy folks to the special education program in our town. So soon we'll be negotiating our first Individualized Education Plan. What fun.

Cancer World

Our partners in treatment continue to battle on, with mixed results. Othergirl's prognosis is still in darkness as back-up plans leave little to celebrate. Princess is in the ICU this week for reason's we're unsure of, and the littlest fighter (there is a 4th -- have I mentioned that?) continues to battle on. Yet, we're not there for the day-to-day updates and support. Our new experience is the one they continue to dream of, and there reality is one we don't wish to revisit on ourselves. Sure, there's email and blog updates -- but its not the same when you're not in it.

Of course, the worst part about being on the bridge is that we can never truly leave Cancer World totally -- and No Cancer World isn't a secure home. From whichever side you view it, Cancer still sucks.