This always struck me as one of the ballsiest titles of anything, ever.
And now, I get it.
Thursday we hied our happy, both-normally blooded selves back to the hospital for the beginning of The Next Chapter. And a lot of it was different. Almost all different drugs, in a different dose, at different times. And I guess the most different part is that, over the course of 56 days the chemo sets change. For instance, I have 4 consecutive LIVE! DIRECT FROM HELL! THIS IS SPINAL TAP!s of Methatrexate on four consecutive weeks, and then no more for the next four weeks. Whereas I swap Cytoxan and Vichristine--the repeater from last time, wahoo!--during the 8 week course.
We are still getting used to the different shape of The Next Chapter, as well as learning what the new drugs are going to do to me.
So far the grey is gone, and it has been replaced with the much more old fashioned 'feeling like shit.'
Which is not necessarily a complaint, really. I recall very clearly--which is in and of itself odd, because so much of the low moments of the first phase almost immediately sort of settled into a soup of negative imagery that refused to stand out in specific detail--that when I was feeling the most grey and had the thickest layers of copper-tinged-blurgh flavor spilling off my tongue onto everything on earth, that I thought to myself and said to N that I wold have rather just been hurt. Pain I can look in the eye, I can clutch the edge of the bed, I can be macho. Or, quite possibly, not; but at least it is concrete. Whereas grey and tasteless are sort of amorphous ailments, and extreme fatigue is just so overwhelming.
But the first day was intravenous Cytoxan with a litre of saline for fluid, IV Cytobarine, plus 6-AMP Mercaptopurine in pill form, and a little IV anti-nauseal.
In short, a nice tidy cinder-block to the face.
But it didn't hit while it was happening. And even pretty late into Thursday night I felt OK. I had gotten a strange flush and a weird sensation that I had instantaneously gotten a sinus infection during the chemo--this is apparently something Cytoxan does, which is kind of impressively odd.
Baltimore pals were hanging out Thursday night, and we were all having a good visit, and then I got less valuable to the conversation, and then it started. Mainly headache and difficulty focusing. I just became a tree stump.
And I didn't really sleep. Cytoxan has the lovely side-effect of possibly making you bleed into your bladder--gee whiz, Cap'n, really?!--so you are not only jammed with extra fluid while they dose you, but you are supposed to pee as much and as frequently as you can.
Which, of course, doesn't work out. The bladder gets angry at the weird crap you are pouring into it, and to re-purpose a George Carlin line about how the body works:
"And your throat closes up, because your throat knows your mouth is crazy, and will eat anything.."
So the first hours after the chemo your bladder grumpily manages to give you just enough dribblage to keep you wandering to the can and leaving frustrated, trying to figure out where the hell the enormous bag of saline they dripped into you has gone and hidden.
But there was no blood, so happy happy happy.
And there was also no sleep, or not much. Between getting up ever couple of hours to try and make sure a river runs through it, as it were, and just having all these new poisons in my system, I didn't sleep and N didn't sleep because I didn't sleep.
Which made getting up at 6:30 to go back to the hospital for the Tap and the second day's dose of Cytobarine something of a buzzkill.
I'll stop complaining soon, I swear.
So back we go Friday, and I get a whole new LIVE! DIRECT FROM HELL! THIS IS SPINAL TAP!
When you are not a resident patient, they send you to a different floor to IR, which is a radiology department that does lots of fun stuff, including popping holes in spinal columns with needles.
But, where, on the cancer ward a capable-if-harried Physician's Assistant just drops by, moves your lunch tray, and slides some steel into you nervous system, down in IR they are Mondo Super Official, and they have a Whole Different System.
You have to go to a prep area, get asked lots of deeply relevant questions like "do you learn best by seeing, hearing, doing, or all of the above?" (I swear that was one of the questions: I thought maybe I would have to watch one and then Tap myself next time.) Then you waltz down the hall--OK I didn't actually waltz--and lay face down on a table that moves you if they want you to move. They take x-rays of your spine while they set the targeting of the needle, and then they angle the whole table head-up to drip your fluid out, and then head-down to drip chemo in.
Very high tech, and I will admit that there seemed to be less discomfort. Though, as I said before, the thing about getting Tapped is not so much the pain as it is the sense of invasion. It never hurts much per se, but the knowledge of the metal and where it is and what some random sneeze could do just freaks me the hell out the whole time.
And because of scheduling and lost chemo and hectic rooms full of sick people--me included-the whole thing took a lot longer than we thought and, having left the apartment at 8am, we didn't get back till 4 or so. So the return visit from the Baltimore contingent got cut even shorter and it was 'bed-ways is rightways for me' (stealing from Burgess again) by 9:00 or so.
But it worked, for the most part, ad Saturday has bloomed with less nausea, and a need to eat to get back the pounds I dropped in the last two days.
Which is a nice indicator that The Next Chapter, as we thought, will be more up and down. Either one or four days of chemo and weakness and nausea, and then three or six days of recovery and eating and trying to get work done.
We are are up for it, and I think I can hack the yo-yo for as long as I need to, but it will be a different learning curve.
We go back to the hospital today to check in for the overnight stay--chemo today, chemo tomorrow, then off home till next Thursday, which I hope will feel like a nice long stretch of normalcy. We'll see.
This multi-day chemo thing is odd for me, but not for most. The greater percentage of people on the cancer ward were getting many days straight chemo and then either staying for observation and/or low numbers, or going home. I seem to be in a minority with my once-a-week hits. I just have to get used to it.
Spirits are up even though I feel a little stepped-on, because it is a clear marker that we have stepped into The Next Chapter, and that is what I hold dear: progress. If we got through last time and performed well--it is all, after all, about performance--then we can hope to do so again, and the only way to get to the curtain call is to stride the hell out on the stage and start doing your part.
So off we go.
