Sunday, September 30, 2007

This Joy

Yet another example of best laid plans...Who knew that Chez Healing would block access to Blogger as a "social networking site"? And, with the option to email a blog entry not activated, I was up a blogging creek without a paddle. Apparently you can only write about your experiences as a sick person if you use Care Pages.

In the end , this is all that matters.

Send up the sun now
The midnight darkness
Is nearly through...

Monday, September 24, 2007

End Begins

And so it comes to this -- on Friday of this week, we will enter into the hospital for Vampboy's last chemo round.

We are ready, yet we aren't. We are excited, terrified, tired, energized -- it is a schizophrenic time. But ready or not, here it is.

To mark the event, there will be some special posts, starting Friday night -- so if you're around this weekend, tune in for sure (or check back next Monday and catch up). This is a profound moment to share with our community -- and you, dear reader, are a part of it.

In the meantime, and with thanks to Metrodad for posting this in his blog, please check out the video below. It's really intense, really beautiful, and captures what cancer can do to a person.

To Friday....


Monday, September 17, 2007

Why, Part 2

Scene: 10pm. Vampboy has a fever of 102. After loading the car, he vomits pedialyte, strawberries and supplemental formula all over himself and me. As he cries hysterically, we clean him up and throw him in another shirt for the hour-long trip to the ER. His symptoms will most likely lead to a stay in the hospital for a day or two. Vampmommy grabs more bibs and towels, heading towards the car in a rush. Vampboy's hat is missing, but time to search for it is slim. Vampmommy's mom is in the back seat, working to keep Vampboy calm as I click him into his car seat.

VD: I need to you be calm, and take deep breaths (VB). If you keep crying you'll make yourself sick.

VB: (sobbing) I go now. Hospital. Shut door. Get in car.

VD: No, son -- I'm not coming. Mommy and Memere are going to take you to hospital.

VB: (sobbing stops) Why.

VD: Daddy has to be at work in the morning. Mommy and Memere are going to take care of you.

VB: Why.

VD: (pause)

VB: Why.

VD: (pause)

VB: Why.

VD: (pause)

VB: Why

(The sound of a heart breaking is heard.)

Fade to black.

Friday, September 07, 2007


There is a beach.

Let it be said that, as a general rule, I am not a fan of nature. "Roughing it" in my book involves a few hours with no electricity and take-out food. I don't like bugs, my pale skin hates the sun, and I find feeling hot (or really cold) as a generally unpleasant experience. I am even less a fan of sports -- save the Westminster Kennel Club and the Tour De France (pre-doping scandals).

Yet, there is a beach. It is at the point of Nantucket -- Great Point is, in fact, its name.

When Fisherman first invited me to an October fishing expedition on the beaches of Nantucket, I laughed at the thought. Yet, in need of a vacation and wishing to seize upon the strange and sacred practice of "guy time", I opted to go. Channeling my inner hunter, I stormed the surf -- adorned in my leather punk biker jacket and LL Bean waterproof hiking boots.

One trip turned into two. A pair of leather waders and a well-worn finger jockey joined my closet. The time spent on that beach, and countless other locations on the island, quickly became a sanctuary I wished to return to regularly. Fishing was only the excuse -- whether we caught anything or no (and what we caught we mostly threw back), the purpose of the trip became one of spiritual communion with a good friend and -- yes -- with the sky and the sand and the sea.

I found another person within me on those trips. Fisherman is one of a small number of my closest confidants -- the "Executive Board of My Life", if you will. We would wander through surreal imaginings together, rolling along in his jeep listening to music I never listened to at home. Grateful Dead, Phish, John Lennon -- and let's not forget Zappa. Most of the time was spent in giddy laughter, while other moments were in the quiet silence where true friendship and connection to the world often reside.

Fisherman and I have been through a lot together. When the agency I worked for needed strong leadership, Fisherman joined me in the fight. Both of us share a passion for representing the best of what it means to be men -- and experienced the joy of becoming fathers with a great sense of pride in one another. When my journey took me to new career paths, Fisherman continued the fight we had started together.

Eventually, life handed opportunity to Fisherman and his family, and they decided to leave the mainland for life on the Island. Like Frodo on his way into the West, there was a feeling that a true dream was coming to pass.

There is a beach. And, off of the beach, life happens. My trips to Nantucket have been curtailed -- first by my son's birth, and then by his cancer. When the worst struck, Fisherman was ready to leap on the first plane he could to be by our side. In the darkest moments of this journey, his voice on the other line has been one to guide me, and keep me sane.

Between prepping the cocktail of nausea drugs to get Vampboy through today, and cleaning up the whirlwind of a day's life, I didn't get to bed last night until 1am. The morning was a rush of getting VB and VM ready to head out to Boston for another day of Chemo, then off to work to address the fact that a funder that had been supporting my organization for 8 years decided to deny our continued funding request without ever informing me. That, on top of the emails and phone calls and letters to get out and meetings to arrange and and and and....

And then there was an email.

There is a beach..And Fisherman is there; alone, save for a seal that brings to the shore an otherworldly presence -- as if God has come to earth as a sea creature. In the quiet of that moment, in the presence of the Great Seal, Fisherman has written about his pain, that has come into his life over the last year:

The Jeep that brought us to the beach, that connected us to the surf, died after 8 years of memories and travel. I immediately recalled our first year fishing together, as we'd drive around the island in a Saturn station wagon, and flail towards the beaches breathlessly carrying our gear. The Jeep was bought after that, and became the Millennium Falcon of vehicles.

Fisherman, like myself, is a dog person -- and this year one of his dogs passed away. I picture that dog -- and my own, who is still with us as ever but beginning to show his 12 years of age.

Then there is Doc, another spirit connection for both Fisherman and I. In order to build his Utopia, Fisherman worked hard to recruit the inner sanctum to head for the island as well (myself included). While it didn't work for me, it did for some -- and Doc was one of the folks who took the plunge and swam 35 miles out to sea. While he still lives and breaths, his efforts to better the community have resulted in his exile. His heart, and Fisherman's, is broken.

As I read again the update in my inbox, my eyes filled with tears. There is a beach, and I miss it. There is a friend, and I miss him. And there is my son's cancer, that has taken so much of my emotion and energy that I can't be as present for the people I care about as I wish to be.

I have often thought of the beach. It is a place I want to visit again. I wonder what I will do if (and when) I get there. Perhaps I'll finally take that moment, with nothing but the Great Seal and the surf bearing witness, and completely fall apart. After this experience, I should do that at least once, I suppose.

And then, I can pick up my finger jockey, and get into the surf with a good friend.


A major milestone in Vampboy's development has taken place this week -- with his embracing of the toddler right-of-passage known as "question everything". Let me provide a dramatic re-visioning of these critical conversations.

Scene: Monday -- Vampdaddy prepares to leave the house to attend a rally for a presidential candidate.

VB: Daddy go to work?

VD: Uh...Sort of. But not really.


VD (internal response): Well, son, your daddy is the Executive Director of a non-profit which operates under the 501(c)3 federal tax code. That code, along with OMB Circulars, prohibit non-profits utilizing federal funding for the purposes of lobbying legislators, influencing legislation or promoting candidates for election. So, my trip out of the house today is personal time, since we're largely federally funded. However, I'm smart enough to know that this particular campaign has been recruiting me hard assuming that my role as a community organizer would translate into spreading the word about what a great president this candidate would be.

VD (Actual response): Well, because.

Scene: Another day, preparing for work.

VB: Daddy go to work?

VD: Yes.

VB: Why?

VD (internal response): Good question. Perhaps I should go work for the pharmaceutical companies. The money is great, and other people can try to save the world. You know, son, I remember when I was younger and had day-dreamed about having a job and my own desk and office. Now I have it (mind you, I have a REAL office -- not even a cubical), and I'd almost give it all up to hang out at Barnes and Noble and read books until I drop dead.

VD (actual response): Because if I don't work, we don't have money. And we need money.


VD (internal response): Are you kidding? Have you seen the medical bills???

VD (actual response): Because, if there's no money, I can't buy you toys.

VB: Oh -- okay!

The whole thing is very cute -- but VM and I are placing bets on how long it will take to become simply annoying.

Monday, September 03, 2007


...And away, in my beautiful balloon!

This weekend took us to a family wedding, followed by a full day at a children's story-themed amusement park -- that would be us way up in the air above. Since Vampboy is at the tail end of a chemo cycle, now is the time to crunch in as much normal playtime in public as possible.

I'm still not sure when the next round (second to last) starts -- it was supposed to be tomorrow, but with a lower than needed platelet count over the weekend we're not sure he'll make it. A delay may be in the cards, but hopefully only a couple of days.