Just when you thought it was safe to go back in the chemo...it's, um...it's not.
We checked in with our regular Drs for the first time yesterday since our lovely sojourn in the House of the Oily Blood. And we learned quite a bit.
Of greatest--well, 'interest' isn't really the word, but what else is there?--interest was that, though they did not come flat out and say it, our Drs, away on their vacations, were checking in once or twice a day on me because they thought maybe I would become dead. That's a tricky medical term, I know, but basically they figured, with triglycerides at 8000, I was as likely to stroke out or pop a heart or maybe suffer a significant breakdown in viscosity, and not be there to belch at and praise them when they returned.
So that was eye-opening. We knew it had been a shitty week; that was never in question. But I am not sure that I ever thought about the lights going out.
Needless to say, and I have checked this since, I am not dead, so let's move on.
Because being not-alive was on the menu for a time, the Drs are loathe to put me back on the Peg. There seems to be universal agreement that the Peg, or really any Asparagenase, is to blame for my troubles.
That the troubles came on so fast and got so bad, that scared them--we didn't even go to the hospital for symptoms, we just went because they couldn't get a good reading on my blood (which, as we later learned, was flowing directly from a blown well-head beneath the Deepwater Horizon).
Long story short: I am changing chemo regimens completely. The one I was was on, cutely referred to as the 'pediatric' because of where it started and on whom it works best, was the Asparagenase-heavy one that seemed best suited to my translocated chromosomes and my A.L.L.
But they got 5 Peg doses in me before my veins became pipelines, and so they feel I have gotten a lot of the benefit of that, and moving ahead with it ain't worth the risk.
So we are changing horses mid-stream, as it were, to a regimen known as Hyper CVAD. Hyper mean 'a shitload of' and CVAD is:
Cytoxan
Vincristine
Ara-C
Devil
...anybody else gettin' a little nervous?
There's also a good bit of Methatrexate, but I guess it didn't fit into the cute acronym so you just have to remember it.
So these are all drugs I have seen before, but in, for the most part, heartily larger doses. For instance, when I got Meth in the vein a few weeks ago, it was 100 milligrams per meter squared (the system by which they dose you according to your mass). This time around, I will get 1 Gram per meter squared, or TEN FRIGGIN TIMES the amount I got last time.
This, I am assured, is balanced by the fact that they dose you over a longer period.
And this is where things get the most different. As opposed to the 'come in once a week or once every 11 days and we will hit you in the face with a Gerry-can full of cement, and then you go home again' method we were using up until ow, the new system is actually one similar to what most of the people we saw on the cancer ward and in the chemo centers are doing.
I will be in-patient for four days at the beginning of each cycle. Over the four days I will get an intricate and interwoven series of chemos--about half of the above-listed drugs per four days--and I will be heavily monitored and held up by steroids.
Yep, that's right, it's back on the roids. I think there's more dex than pred, but still, I am already jittery in anticipation of feeling like a terrified-yet-rabid dog again. Good times, good times.
Anyway, after the four days on the pole, they give you a shot of Neulasta, which is a system-propper-upper, and they send you home. At home you feel OK for a couple days, and then you crash hard, and then you start to climb back up. On day 11 you pop back in for a quick Vincristine--you know, like a palate cleanser--and then you are home again for basically a month, until your numbers, smashed to bits by the first 4 days, recover enough to go back in for more.
The next 4-day kick will cover the rest of the drugs you didn't get the first time. So it is a two-month set of two cycles that will cover the full dosages.
Poor sods like I was in April, who just got word of the beast in their bones, tend to get sent off on a lovely 8-month tour of this devilish roundhouse.
Because I have been under the 'pediatric' gun for five months already, I have a bunch of these drugs already checked off on my "have we stabbed him in the earhole with this yet?" list. So over the next couple days the Drs will do some magic math and some human figuring, and they will tell us when we go back in for bloodwork on Monday how many month cycles I have in store. The anticipation is making my fingers tingle...oh, wait, that's the neuropathy. Right.
The good news is that this method is still one intended to cure with chemo and avoid transplant.
The good news is that my last biopsy came back solid, all the way down to 'molecular remission,' (which just sounds so much like an alt-rock band).
The good news is that we made it through Labor Day without getting dead.
The bad news is...well, just reread the above description.
Because of the oil-for-blood scandal and the upcoming boot to the neck treatments, we are being given something of a reprieve. We are taking most of next week in Baltimore, where, after N gives some readings from her book, we are going to relax actively, treating Baltimore like it was the Caribbean...or the Caribbean, hon.
We will eat crabs, N will drink beer. We will hopefully catch an O's game--have you heard? They're good now--and we will sit firmly on our asses and recover, for Monday the 27th starts the war.
Then we will have to re-shuffle our lives for the next however many months. My agency had just gotten kinda used to my availability based on the old sked. N had just sot of figured out her book tour.
We'll make it work. The Transmedia Debut Book Launch at the 92nd Y/TriBeCa will still go forth on Oct 9--be there or be square. I may be sucking a little wind, but I am mainly directing and only performing in the first section, so I'll just dig out the performing-bear-genes that have lain dormant these many months and tough it out.
When Freddy Mercury sang 'The Show Must Go On," he was dying of AIDS. I can hack some low blood counts and nausea. This is N's NY memoir debut. This is what we've worked for for a long time. This is the kind of piece of the future I cling to, work towards, yearn to see pass beneath me on the calendar. It is success, of her work, of our work keeping me alive and moving in the right direction. It is the reason to fight through the pain and the shifting sands of regimens come and gone, of the blood thick like choking mud and the piles of pills every morning. It is the reason for the fight.
"Inside my heart is breaking,
my makeup may be flaking,
but my smile still stays on.
On with the show."
