Well, we are back in the saddle of intensive-chemo hell today. It's been a long one, so let me simplify with "the list".
Into the White. The final days of chemo-free life included a return to form in Vampboy's eating. I'm proud to say my son enjoyed the typical cuisine of his age group -- entire plates of pasta and sauce (without the need to chew -- just swallow it whole!), banana bread with cream cheese (or more like, cream cheese with a little banana bread), sour cream (with a spoon), yogurt, and chips and salsa. Most of this all at once, by the way.
The Great Unknown. Today was started with our first trip for radiation therapy. After dealing with the bureaucracy of medical establishments, the efficiency of the radiology department was breathtaking. The smooth operation made the sheer terror we felt in this big step somewhat subside. Vampboy did okay, so we're off and running and hoping for the best.
Just breathe. Vampmommy's cousin is, as I type, in the midst of a double-lung transplant. Having a family member in the midst of such an intense medical drama on the same day as our beginning of "round two" made today a bit more difficult emotionally. We are certainly sharing the good energy that comes our way with him tonight.
The Sound of Silence. Vampboy is losing his hearing -- or at least some of it. This is largely due to a drug called Cisplatin. He will most likely need a hearing aid in at least one ear when this is over, and we are beginning speech therapy as soon as we can squeeze it in to take advantage of what remains of his hearing and keep him moving towards speaking in complete English instead of broken toddler-babble. His hearing may get worse, due to further Cisplatin doses over the next two cycles. But in the meantime, I'll make preparations by practicing charades, I guess.
There you have it. Let the games begin.
Monday, January 29, 2007
Monday, January 22, 2007
You Know who you are at Every Age
Well, it's birthday week in the Vamp household. Vampmommy celebrated her birthday with a little gathering on Saturday, even though her actual birthday isn't until Friday. That's "Return to the Hospital" day, so there won't be much celebrating to speak of.
In the meantime, my day is today, where I make the big transition to 35. Somewhere there's a form I'll have to fill out that will put me in another age category, and I don't think I fall into a subset any longer that considers me "a youth".
Ah, well -- as I start the day with Vampboy in my arms, desperately wanting to return to the banana bread awaiting his eager tummy in the kitchen, I thought I'd share with my readers my little ritual for this day - when I take a moment to listen to "Birthday" by the Sugarcubes. The video is a bit strange (it's Bjork, after all), but enjoy.
In the meantime, my day is today, where I make the big transition to 35. Somewhere there's a form I'll have to fill out that will put me in another age category, and I don't think I fall into a subset any longer that considers me "a youth".
Ah, well -- as I start the day with Vampboy in my arms, desperately wanting to return to the banana bread awaiting his eager tummy in the kitchen, I thought I'd share with my readers my little ritual for this day - when I take a moment to listen to "Birthday" by the Sugarcubes. The video is a bit strange (it's Bjork, after all), but enjoy.
Thursday, January 18, 2007
The Whole Price of Blood
There is, first and foremost, the cost to the body of the cancer patient. Scars, loss of hair, loss of hearing, loss of cognitive function, loss of weight. Damage both immediate and latent, both known and "yet to be seen".
But then there is the cost to those in the immediate ficinity -- family, loved ones. It's like the shockwave that rips the windows from homes miles away from a massive explosion. Crippling emotions that can be felt physically. Lack of sleep, lack of appetite -- lack, lack lack.
Then there is the ripple effect beyond that -- the plans laid waste, the perceived future that now sinks into darkness. The very nature of existence ripped from your world view, stomped on, and returned in pieces.
The cost comes in so many forms - physical, emotional, mental, financial.
How high a price can one be asked to pay?
If I haven't said it yet -- fuck you, cancer. Fuck you.
But then there is the cost to those in the immediate ficinity -- family, loved ones. It's like the shockwave that rips the windows from homes miles away from a massive explosion. Crippling emotions that can be felt physically. Lack of sleep, lack of appetite -- lack, lack lack.
Then there is the ripple effect beyond that -- the plans laid waste, the perceived future that now sinks into darkness. The very nature of existence ripped from your world view, stomped on, and returned in pieces.
The cost comes in so many forms - physical, emotional, mental, financial.
How high a price can one be asked to pay?
If I haven't said it yet -- fuck you, cancer. Fuck you.
Monday, January 08, 2007
Tiresias Speaks
During my days as a theatre student, I was a member of a comedy troupe on campus that did parodies of popular works of literature. Hamlet, the Bible, the stories of Edgar Allen Poe, all met the sword of our dark humor. Good times, indeed.
Our crowning performance, and one that I still have somewhere on video, was our version of Oedipus Rex. This is the classic Greek tragedy about the man who murders his father and marries his mother, pursuant to a prophecy that the father was told at his son's birth. While he does what he can, including leaving his son to die in the desert with his feet pinned together, it does not stop the series of events that were foretold. The son (Oedipus), after realizing what has happened, promptly expresses his shame by gouging his eyes out with curtain pins.
And, yes, our version of it was damn funny.
Anyway, the major theme behind the play is one of fate versus free will -- are we really masters of our own destiny, or are we flopping along like fish on the line of life, certain to act out whatever fate had been dealt us from some distant force? Complex concepts, do doubt -- but they are the ones that come up when you are faced with what we face.
Award shows (particularly the Grammy's for some reason) seem to be the perfect platform for even the most self-absorbed lunatic to credit God for the gift of the moment. As if the supreme being was sitting around one day and said, "You know what I need to do? I need to have that Lauren Hill lady make a killer record that sells like gangbusters!" Is it really that simple? Are our lives already laid out, and all we have to do is live them, and take the good and the bad as inevitable parts of who we are, what we were meant to do or learn? Or, is this all random chance, where some of us coast along while others get either the Grand Prize or the big bag of dog poo, each for no other reason than "because"?
We have had our meeting. We have heard once again about the tiny points of radioactive beams that doctors want to pass through my son's brain, into the space where his tumor was. We have understood that Vampboy will most likely die without this in his treatment. We have heard that he will have cognitive delays, which could range from the simple learning disability, all the way to being unable to live independently (the latter does not seems to be playing out as a possible result of this treatment according to the experts, due to the small size of the tumor site along with the low radiation dose. But, like any rare side effect, it's their job to make sure we're informed). The medical team has begun setting up appointments and tests to prepare for the 6 weeks of radiation treatment, while we contemplate the desire to continue.
But, is it really our decision to make? Forget the fact that the treatment team is in agreement that it makes sense, and that they think the risks are worth it. Forget that, given the likely scenario if we don't, we don't actually have a choice here. The reality is, if we believe that things happen for a reason, whatever decision we make is the decision we are supposed to make. The burden of second-guessing ourselves for eternity is lifted by the mere fact that we are doing what we are supposed to be doing.
Liberating, definitely -- a psychological construct to prevent us from going insane, perhaps -- but nevertheless we have "decided" to proceed with radiation therapy for Vampboy. It will start at the end of January, and go until March. It will also add 6 weeks to his treatment, meaning that our August end-date will be moved to September/October. It will make our sick little one that much sicker, and two tired parents even more spent.
Whatever road we are on, let us hope that our destiny ends more on the comedy than tragedy side.
Our crowning performance, and one that I still have somewhere on video, was our version of Oedipus Rex. This is the classic Greek tragedy about the man who murders his father and marries his mother, pursuant to a prophecy that the father was told at his son's birth. While he does what he can, including leaving his son to die in the desert with his feet pinned together, it does not stop the series of events that were foretold. The son (Oedipus), after realizing what has happened, promptly expresses his shame by gouging his eyes out with curtain pins.
And, yes, our version of it was damn funny.
Anyway, the major theme behind the play is one of fate versus free will -- are we really masters of our own destiny, or are we flopping along like fish on the line of life, certain to act out whatever fate had been dealt us from some distant force? Complex concepts, do doubt -- but they are the ones that come up when you are faced with what we face.
Award shows (particularly the Grammy's for some reason) seem to be the perfect platform for even the most self-absorbed lunatic to credit God for the gift of the moment. As if the supreme being was sitting around one day and said, "You know what I need to do? I need to have that Lauren Hill lady make a killer record that sells like gangbusters!" Is it really that simple? Are our lives already laid out, and all we have to do is live them, and take the good and the bad as inevitable parts of who we are, what we were meant to do or learn? Or, is this all random chance, where some of us coast along while others get either the Grand Prize or the big bag of dog poo, each for no other reason than "because"?
We have had our meeting. We have heard once again about the tiny points of radioactive beams that doctors want to pass through my son's brain, into the space where his tumor was. We have understood that Vampboy will most likely die without this in his treatment. We have heard that he will have cognitive delays, which could range from the simple learning disability, all the way to being unable to live independently (the latter does not seems to be playing out as a possible result of this treatment according to the experts, due to the small size of the tumor site along with the low radiation dose. But, like any rare side effect, it's their job to make sure we're informed). The medical team has begun setting up appointments and tests to prepare for the 6 weeks of radiation treatment, while we contemplate the desire to continue.
But, is it really our decision to make? Forget the fact that the treatment team is in agreement that it makes sense, and that they think the risks are worth it. Forget that, given the likely scenario if we don't, we don't actually have a choice here. The reality is, if we believe that things happen for a reason, whatever decision we make is the decision we are supposed to make. The burden of second-guessing ourselves for eternity is lifted by the mere fact that we are doing what we are supposed to be doing.
Liberating, definitely -- a psychological construct to prevent us from going insane, perhaps -- but nevertheless we have "decided" to proceed with radiation therapy for Vampboy. It will start at the end of January, and go until March. It will also add 6 weeks to his treatment, meaning that our August end-date will be moved to September/October. It will make our sick little one that much sicker, and two tired parents even more spent.
Whatever road we are on, let us hope that our destiny ends more on the comedy than tragedy side.
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