Where ya been

They ask. Well some of the nicest people in the world, also known as my actual blog readers (a small group), have asked me why I haven't been blogging much lately. The truth is, because I'm boring, 

And/or.

I've been busy and I've been feeling really pretty great (Albert Einsteinishly - that is, relatively - and relativity makes all all all the difference) so I guess I don't have as much to complain about. I don't have much to say. What the hell does that say about me? That I'm only interesting when I am a cantankerous carbuncle of disgustingness stuck on the side of a piece of cardboard left out in the rain? That I only have something worthy to say when I'm complaining? That really there's nothing much to regular me? Or that feeling shitty just gives me an excuse to pretend to express myself when really I have nothing to express? Perhaps.

Let it be.

Today is Tuesday. I have my third set of chemotherapy in two days - on Thursday. I've compartmentalized this incredibly well. In nesting boxes. Thursday is lying in a very small compartment that is inside a box on aisle 17 of my mind. You cannot get to that box unless you go find the librarian in charge just to look up its coordinates in the card catalog but she's kind of too busy to even look right now. She's off in the stacks with the dark janitor. Anyway if you you catch her attention, and she finds the information you're seeking, and then gets a warehouse person, you can go down a dark steep corridor and get one of those beeping machine car pallet movers to drive up that aisle, then telescope way up to the top shelf. He/you/I might be able to pull down the box/compartment that contains the knowledge that I will be doing chemotherapy on Thursday if you really want that box. I don't. 

Thursday will find me feeling violently disgustingly sick again. Thursday will be 12 days long. 262 hours. I don't really want to think about that ever. Much less do it. Even though at the same time I am honest and of course I know this is coming. I'm dreading it but my dread is underneath a layer of strawberry ice cream that is planetary.

Weirdly, this experience has been a tiny little bit like childbirth - in that you forget the pain a little bit as time goes by. It recedes. This is good, otherwise I might be in a mental institution. I am not kidding. 

So far my chemotherapies go like this: 12 days of feeling like death, followed by eight or nine days of feeling progressively better, first like 20% of yourself, then 30, 40, 50, 60, 70, 80, 87. Then you remain at 87% normal for a few days, and then the cycle starts over on day 21. Or something.

So at noon on Thursday, yes, I am back on chemotherapy once again. I KNOW!!!!

I thought about dropping one of the drugs that is in my regimen, and I still don't know if I'm going to. Adriamycin. I won't know if I'm going to take it or not right up until the moment that the needle pierces the plastic tube that pierces my chest. 

I've done so much research on Adriamycin that I have decided completely against it and to never take it again. NEVER! Then when I dug a little bit further into the research I decided that yes I must take all six doses of Adriamycin and it's extremely important that I do so! YES! And then when I researched a little bit more I came up with the conclusion that was somewhere in the middle of those two poles. A big fat: UHHHHH UM UHH YEAH LIKE HMMMM UH UM 

I could sneak into a conference right now and give a fairly lucid speech on this drug. I'll let you know what my latest final plan is. Presently.

I'm also thoroughly not impressed with the drugs of the 21st-century. They promised me drugs. They promised us jet packs. They promised us impenetrable raincoats. They lied. 

Zofran doesn't do anything for me. Compazine is a freaky old drug from 50 years ago that doesn't do anything for me. Lorazepam is a raindrop on a Patagonia coat. Phenergan works a little bit but it also has this nasty side effect called akathesia plus another one called tardive dyskinesia. More on the tardive thing in a sec.

Let us examine akathisia first:

Akathisia, or acathisia (from Greek καθίζεινkathízein - "to sit", a- indicating negation or absence, lit. "inability to sit") is a syndrome characterized by unpleasant sensations of inner restlessness that manifests itself with an inability to sit still or remain motionless. The term was coined by the Czechneuropsychiatrist Ladislav Haskovec (1866–1944), who described the phenomenon in 1901.^{[1][2] (from the not too great but thoroughly informative Wikipedia)}

Reglan is another drug that appears to have not much of an effect on me, and like Phenargen, it is rather impressively famous for the side effect called tardive dyskinesia that I introduced above. Which can be permanent. A week or so ago I was getting some fluids and medicine at a clinic because I felt so poorly, and the nurse practitioner ordered Reglan for me la la la. I slumped there, panting, waiting for relief, and my ears pricked up. I overheard one of the nurses say in an extremely amazed way (you'll have to add emotion to this that kind of make it sound like you're shocked and shrieking a little bit and your voice went up a bit higher): "REALLY!!!???  Are you SURE?????" I was granitely dulled out but even in this state the reptilian part of my brain awoke. So I looked it up. 

Let us know examine tardive dyskenisia:

"a neurological disorder characterized by involuntary uncontrollable movements especially of the mouth, tongue, trunk, and limbs" (from the Merriam-Webster online dictionary)

The best way to treat this is to prevent it, in other words don't freaking do a drug that could cause this because it can become permanent. And real real real bad. Mind you, when I was feeling as bad as I was, kind of like the last person at the very tip of the Titanic as it was going down, but they were welcoming the icy sea, I possibly would've traded feeling well for those symptoms above. I really would have considered it. In fact I did consider it and I said yes give me the damn drug. Right now. But it didn't work. Yes I took it that's how bad I felt, but it didn't do anything. 

Damn.

Believe me there's a lot more that you could look up on both of these peculiar little side effects, but the more you read the worse it gets so I pretty much stopped reading about them for fear of wanting to jump into a mineshaft. Reading about side effects of drugs is a rabbit hole.

Okay back to my original rant on drugs. So far I have not encountered an antinausea drug that really makes me feel good while I'm doing chemotherapy. And so, I'm becoming dismayed at the entire medical world, and its apparent lack of ability to look at the whole patient. I mean here is a person who feels absolutely dreadful, miserable, low, apathetic, and what they hear is: have you tried drinking ginger ale? (Smile at the rumpled person). Well take the Zofran, and if that doesn't work you can take a Phenergan, and that that doesn't work you can actually take a third drug! (Look sympathetically at the gross human crumpled before you). Et fucking cetera.

But wait! THEY DON'T WORK! Where are the miracle drugs? I'm asking for Marinol. After that morphine. Am I kidding? Don't know.

Oh well. What else?

Today I threw my class a party, because it was my last real day to teach. For the entire year. Well that sounds melodramatic since the year is ending in a few weeks. I should say until next fall, which is a big deal for me teaching is my favorite thing and it's very hard for me to take the spring semester off, but I've decided I should do this because of how I feel. Well it is the last day for the academic year. This is sad for me. 

So this morning Mike and I made 25 breakfast tacos. By hand, he made the bacon, and I scrambled 24 eggs at once, which was rather hilarious. I brought my kids with me to school and we served each student a breakfast taco and some homemade chocolate chip cookies and some orange juice. We waitressed quite nicely. It was a fun day.

And I've been cramming Christmas shopping in the last few days, in preparation for being down and out for most of the Christmas shopping season. That is also been fun. Doing regular ordinary things is really great for me right now.

I received a beautiful cashmere scarf and hat from Italy today, thank you Annalisa. How incredibly sweet of you. People have been so kind to me, I hope that you all know how much I appreciate you.

I drove on the field trip yesterday with the eighth-grade at NYOS charter school. It was fun even though there was some squabbling and arguing amongst the 13 and 14-year-old girls about who got to ride in the van and sometimes the art of graceful living was not very full of grace. However I loved it all. And I shall do it again.

Tonight I am going out to dinner with my breast cancer support group. We are going to discuss how much of your boob caves in after some of it is scooped out. We might even strip off our shirts and do a comparison right there at the brewpub. I have no idea. 

Last night I went to a bookclub hadn't been to for a few months, and it was a breath of fresh air and several glasses of fresh wine, and many many hours of fresh laughter and conversation. It's been good getting back to some fun. 

And now I will be getting back to my cave. But I'll be writing to you from there, and waving.

From "Atlantis" by Ellie Goulding:

Where'd you GO? Where'd you GO? Where'd you GO? Where'd you GO? 

Where'd you GO? 

I'll forget you not
I'll forget you not
I'll wait for you... for you... maybe

Where'd you GO? 

Where'd you GO? 

Where'd you GO?