Our Cancer

Leroy Sievers is gone.

Those of us who have been reading his "My Cancer" blog over the past couple of years new this day was coming. Recently, it was clearly nearer than ever. Yet the shock of reading that he passed away suddenly this weekend still reverberates.

For those who live in "C World", Leroy's blog became more than just another person's account of their cancer journey. For many, it became a community -- where comments were left and exchanged that brought together many who were experiencing their own battle. Leroy was someone who clearly read people's comments, as he'd often be inspired for his daily post by something someone else commented on the day before. When a long-time reader lost her battle, he wrote the next day not about his own experience, but her -- and the impact she had clearly had on so many in the "My Cancer" community.

A few weeks ago Leroy appeared on NPR's "Talk of the Nation", and followed his appearance with a live podcast. I think I asked some stupid question regarding how Leroy had dealt with health insurance issues (I must have been knee deep in fighting over some bill or another that day), but the other questions were shockingly forward: Was Leroy prepared to die, how did he want to spend his final days, did he have a "Do Not Resusitate" order, etc. Leroy never flinched, never waivered in giving an answer as direct and honest as the original question.

There are plenty of times that I feel like I don't want to write about VB's cancer any longer. When something happens that becomes a part of who you are against your will, there are times you'd just like to put it aside and forget that it ever happened. In those moments, however, I've often thought about Leroy, and his decision to get up every day and write something, anything, that would bear witness to his experience and the experiences of so many that did not have the platform for expression that he did as a reporter. Leroy's expample inspired me to open up my computer and follow his lead.

We who live and fight and struggle against cancer have lost a great voice, one who dared to put out to the world the unfliching reality of this experience. May all of us who choose to tell our stories, in whatever way, continue to carry Leroy with us.

VB 4, C 0

"Code Blue".

We all know what that means -- at least, those of us who have kept at least one medically-related show in our viewing repertoire since the dawn of television. When you're sitting in the lobby of Chez Healing, eating a bagel sandwich while your son sleeps two floors above you in an MRI machine, your mind goes places when you hear those words over the intercom.

Somewhere nearby a life is possibly ending. Did anyone see it coming? Is this how they expected it to turn out? What hopes and dreams are suddenly being placed into the "never mind" pile? Are the parents there, watching this unfold?

Will George Clooney or Noah Wyle show up in time to save them?

I'm going to hell, I think to myself as I move beyond my shallow curiosities and focus on the breakfast food before me. Of course, I understand that this belittling of what is most certainly a nightmare for someone is my own emotional defense, designed to keep myself from going down the road of envisioning, feeling, preparing...

But there is no need to fear the worst today. Once again VB returned from his MRI a little groggy from the anesthesia, but still "free of disease".

A day without our own Code Blue -- a good day indeed.

Thank you, Thank you

1. Thank you to members of the "Stem Cell Cyclists" team, who as of last weekend had raised over $100,000 while participating in the Pan Mass Challenge with VB as their "pedal partner"! Since last year's ride took place while he was in the hospital, it was a great treat to be able to hang out at one of the water stops this year and cheer the team on!

2. Thanks to everyone at my "old job" for the send-off. I miss you all already.

Yes, I have an "old job" because....

3. Thanks to everyone at my "new job" for making me feel welcome! I know I've yet to speak of it here, but I was offered a great chance to expand my horizons and take on an ambitious project covering the whole "vamp state". There's a lot to learn, but I'm a week and a half in an loving every minute of it!

4. Sadly, NO thanks to the seizure gnomes that took it upon themselves to once again dance around in VB's head -- not once, but twice in the last week. It appears that our little man is growing up fast, and while his weight has not gone up, his little "I think I can" metabolism decided to ramp-up a bit and drop the effectiveness of his medication dose. So we've upped it yet again, and hope that the gnomes go back into hibernation...Forever.

5. Thanks to Chez Healing and VB's treatment team -- who are willing to address our concerns regarding the "other" potential reason for #4. They've moved up VB's next MRI date to this coming Tuesday, August 12th (it was supposed to be later in the month). So we only have to wait a week to put to bed any fears that the gnomes are the least of our worries.

6. Lastly, thanks to everyone who has donated so far to my Jimmy Fund Walk effort (see the link on the left of the page if you'd like more info on this shameless plug). Truth be told I've yet to pound the pavement in preparation -- as the new job/gnome battle has kept me quite busy. However, mentally I'm already walking, and isn't half the battle psyching oneself up? I guess we'll find out after they carry my over the finish line in September.

I Will See You In Far Off Places

There we were, enjoying the naive innocence of "tub time", when VB mentioned that he'd like to go to the hospital to visit Baby M. This it where it begins -- the time when questions are asked no child should need to have answered.

You see, "Baby M" is the young co-cancer-fighter who died back in the fall.

VM calls me upstairs to explain who VB has said he will visit. We look at one another with sad eyes. Of course, we knew this day would come. I suppose that every parent has to deal with the "death" issue at some point, but if you're lucky it involves the death of a turtle, sock puppet, or something else benign. Not another human being -- and certainly not someone who died of the same thing that could still spell the end for the inquisitive child as well.

I respond that Baby M is not at the hospital any more. VB disagrees, clearly looking for something more satisfying in a response. VM starts to explain. "VB, do you remember when you were sick? Well, Baby M was very sick -- very, very sick."

"Yeah," VB replied, with his shoulders shrugged and his hands raised in an "I don't know why" position. "She's sick. She needs medicine real fast."

"Well," VM said tentatively, "the medicine didn't work. She was too sick."

"So she's gone," I tack on.

VB thinks for a moment. "Yeah, she moved to a new house."

"Well....Sort of." VM shoots me a look as I give this reply. Technically it was a fair answer -- depending on your view of the afterlife. "He's only 3" I whisper quickly, "there isn't much of this he's going to understand."

Many years ago I used to run summer leadership camps for high school students. As camps go it was a rather emotionally intensive affair, complete with intense bonding and "warm fuzzy" sharing amongst participants. Towards the end of the program, when we were working with the youth to help them prepare to say goodbye to the experience and head home, myself or a camp counselor would read The Fall of Freddie the Leaf. We'd of course lighten the discussion of death that is at the core of the story, and instead use it as a metaphor for endings in general.

Never in a million years would I ever have conceived I'd find myself running around my house one day, searching for my copy, so I could help my son understand why his little friend is gone; that the same thing that took her away almost took him as well...And still might some day.

Yet, there I was.

However, by the time I found it, I returned to VB's bedroom to find him curled up in bed with a far better book. With a mix of relief, and the nagging existential angst that keeps me drinking way too much coffee, I put death aside for another day...And hopefully many, many more.

While Waiting for the Real Fireworks to Start

VB seems back on track, so we made the obligatory trip to the fireworks display in the next town over -- which is the town I grew up in.

VD: You see that building right there, son? That's where your daddy went to high school.

VB: Oh.

VD: Actually, not that part of the building. That wing didn't exist at the time. I went to that part.

VB: Oh. I go to school.

VD: (thinking) Hmmmm...That sculpture wasn't there either. And it seems they aren't letting people on the football field. That's odd -- that's where we used to sit. I guess we'll sit here, at the same spot we started our short-lived Croquet club; complete with finger sandwiches and rousing versions of "que sera, sera". How very Heathers it all was.

That was so long ago...Damn, I'm getting old!

We are Fireworks

It would be easier if VB's seizure's were the more typical variety that people expect when they hear the word -- some wild arm flailing or flopping about that's clearly visible from a mile away.

If only...Instead, the electrical haywire happens subtly -- slow cognitive leak versus a volcano erupting. The active boy goes quiet, his response to your questions takes longer. He seems "out of it" -- even more than the average 3 year old. Yet, to move to a place where you realize something might not be quite right, moments pass -- and the fog roles in.

Then comes the synaptic firing of the parents, each 5-10 minutes away with their "work caps" on. The phone rings, the voice says "come now", and the parent brain begins to shout.

Shut off the computer pack the bag tell the staff maybe you'll be back maybe not get the car will I be back probably not thank God I have sick time to use I can pick up where I left off on Monday I KNEW he looked off this morning why didn't we keep him home today isn't this appropriate that he has his first seizure since February the first week his mother returns to work he's gained weight so of course his medication dosage is no longer enough WHY IS THIS PERSON SITTING AT A GREEN LIGHT GET OUT OF MY WAY I wonder if I can speed perhaps that cop will just follow me to the school and take pity as I rush in well maybe not I'll slow down I CAN'T HEAR YOU HONEY THE PHONE IS BREAKING UP WHY DON'T I JUST GET THERE I hope this doesn't require a trip to the hospital this had better be just a breakthrough seizure and not a sign of relapse relapse relapse the BIG R that we won't think about because I don't have the energy there's the turn almost there where can I park with the dogs in the car it's a billion degrees out F@##% it I'll just leave the car running with the air conditioner on we live in a decent town my car should be fine now how do I get to the room he's in I know the sign says "please do not go down this hall follow detour" but it's quicker so screw it no one is watching anyway I'll just keep running run run run run run I'M HERE I'M HERE IT'S OKAY I'M HERE......

The explosions stop. The fog clears. Suddenly the boy snaps to normal, while VM takes a call from the doctor for an update and the teachers fill me in on the proceedings of the morning. We head home for an unplanned afternoon. VB takes a two and a half hour nap while I lay at his side, feeling his warmth and begging the universe to stop kidding around.

The North Atlantic Sand

The beach cottage is 600 square feet, but its design seems to keep that a secret. Tall ceilings with quiet fans that spin lazily in the warm summer air give you a feeling of vast, open space. With central air, elegant paint and furnishings representative of a Pottery Barn summer catalogue spread, this is far from the "family summer cabin" days I spent as a kid. Back then, the summer cottage was a log cabin in Minnesota with no running water and sleeping quarters in a tiny attic space. But now, thanks to the generosity of friends, the idea takes on a whole new (and far more luxurious) meaning.

The weather is perfect -- warm but not stifling. The rain and thunder rolls in surprisingly on our schedule, giving us the ability to be outdoors as we wish, and making the perfect moment arrive for VB's fist film experience -- complete with a darkened living room and "The Little Mermaid" on DVD. Vast amounts of popcorn is consumed as the rain does what it needs to outside, leaving just in time for our next outdoor adventure.

What adventures the outdoors bring -- a zoo alive with baby bears and kangaroos that give VB plenty to talk about. Mini-golf that gives VB a taste of his grandfather's favorite past time.

And the beach -- gone is the vision of the crowded, muggy, sun-screen smelling environment I despise. Instead the vast ocean greets us with minimal company but the seagulls and waves. Decked out in sun-proof swimwear and with our sun-proof tent for shadowy afternoon naps, I am free to listen to the waves and stand on the rocks staring at the horizon, which shows itself in my favorite shade of blue. VM frolics in the ocean, while VB smiles and digs and laughs and plays.

The moments are perfect, like a string of rare jewels.

Now I know what vacation feels like.