debacle

I think debacle is the appropriate word for "What I Did On My Thanksgiving Vacation."

I can't tell you how many of my friends and family asked me in voices rife with supportive and logical concern, "Are you sure you think it's a good idea to travel south (the day after your first chemotherapy treatment when you have no idea at all how it will affect you; where you'll be happily off the grid, no cell or other service, where the lovely little cabin is frozen solid, thus no running water or flushable indoor plumbing without lifting and dumping a five gallon bucket each time, where the wood fires are still burning, only the intrinsic smells of sulfur and kerosene that once comforted are suddenly noxious to my now-sensitive nose, where walking over hill and dale for the eggs I forgot and to see people I love is part of the culture) for the holiday?"

"Might as well go while I still have some strength," I said. "Most people say chemo isn't that bad at first." And maybe it isn't, but on the continuum of "that bad" are things like: queasy, don't get far from the bathroom, continual hot-flashes, no sleep, dehydration, and bedridden.

"I'm sure I'll be fine," I said. And I am, but I'm not. After three nights of zero sleep, we came home two days early. I would do just about anything to sleep. I'm exhausted, but sleep is not for me. I just lay there and lay there. With the chemo, they dump in a bag of dexamethasone, dex and meth being the operative syllables, and I haven't slept since Tuesday. In another life I could've made some serious money with that shit.

So, I'm respecting my treatment and taking more thoughtful care of myself. I'm stubborn. Born that way.

portals

Feeling a little John Malcovitchy today. Getting a port installed in my chest, on my chest. They say it won't hurt. How silly is that?

"We're just going to carve a hole in your body, fish around in there until we find the vein that runs (happily, undisturbed) under your collarbone, ask it very nicely to hold still and stuff a tiny little hose down it. Then, we'll stitch you back together with fishing line and send you home with some Ibuprofen."

Oh. Okay. How 'bout I do the same to you?

I mostly love doctors. I've moved along the periphery of their world all my life, and I'm pretty comfortable with all the medical ins and outs, but the whole carving=no pain? I'm not buying it. While I'm screaming about the painful swelling under my arm (post-lymph node-carving) my surgeon says, "It's not supposed to hurt like that." Well, I agree completely. Com-fucking-pletely. And yet it does. But, I don't want to piss off the surgeon prior to portal installation with a sharp object, so I'll just smile and say thank you. Thank you for hurting me while you save my life.

Ah.

Wating for Jessica to pick me up at ten:ten. My friends. Wowzer. It almost makes me believe in the intrinisic goodness of the human race ala Rousseau. Almost.

so far

so good. (this post is out of order. Written prior to lumpectomy, just to clarify.)

All xrays, radioactive injections and bloodsucking done. Everthing so far is negative. I'll learn about my bones on Monday. Boy, the staff at the surgeon's office is really in a hurry to get the information back to you. Most women must be in a hurry and easily frustrated by the eternal wait that is western medicine. But me? Nah. I can wait. If I was a doc, and people were rushing me, I'd probably lie just to shut them up. "Yeah, you're fine. Now go away." Be happy I couldn't afford med school.

It is somewhat anxiety provoking, made all the worse by life without estrogen. I'd rather do life without oxygen. And, it turns out, that is my choice. I've argued with Szeto (my doc) for years about the suck of menopause, my general impatience with the anxiety I experience in the absence of HRT. I may be finished with menopause for all I know, but will still have to experience withdrawal from estrogen, hot flashes and sleeplessness. I guess its better than death.

disclaimer

Disclaimer

Now it is not the best of me

that glorifies the worst in me

and it is not the east of me

that contradicts the west of me

nor is it just the first of me

has changed to suit the last of me.

the last of me has not yet been

the worst has never given in

or given up

or ever will

or even can

or has the will

to go beyond

the who I was

and still may be

and without pause

I celebrate the rest of me

I celebrate what’s left of me.   jk19??

I don't remember why I wrote this poem, or when, but asha asked me to call it up from the shadowy ethers of my past. I think she knew it would make me cry. 

I am less. I am 1/2 of one boob less. Boob and Bob.

Today I thought I had an appointment with the radiation guy, but it was the chemo guy. Probably best that I was surprised. I didn't want chemo. But these are the decisions of my life these days. You can have chemo or you can die. Oh. Well. Since you put it like that. 

So, there I was, sitting in the oncology office. The awareness that everyone sitting next to you has cancer is profoundly unsettling. A sad little woman came in and she was escorted by her giant son, and her cancer was consuming her face and he had to suction her so she could breathe and she should have been somewhere safer, somewhere she could have been treated tenderly. but she was one of those odd little people who have probably known little tenderness in their lives. It broke my heart at the same time I nearly vomited in my gucci bag. 

I don't have a gucci bag.

But the thing is, I am frequenting these places now. And when I need an appointment, they don't ask, "what's a good day for you?" They give you a card with the next available appointment on it and you show up. Cancer is in charge. I'd like to get ahead of it, but it is calling all the shots these days. The first appointment that got MADE for me, I said, "I'm not sure about thursd..." and before I could finish my sentence, the scheduling woman looked at me with such -- I don't know -- not disdain? incredulity? that it put me quite literally in my place. Your little tea parties are backburnered for the time being, bitch. Its a good thing I don't have a job. They wouldn't care. But the thing is, they do care. And I am simply expected to adjust. Its kind of like I unwittingly stepped onto that conveyor belt -- you know the one in I love Lucy, where the chocolates keep coming faster and faster and she is trying to keep up.Only in this scenario, the chocolates are doctor's appointments and I am still Lucy. And there is really important information to be gleaned at each one, and I'm functionally deerintheheadlights. Let us not forget I was diagnosed on the 17th of October and surgered on halloween at which point my husband thought he would draw a jack-o-lantern on my tit. It hasn't been a month.

I am having a port put in near my clavicle next Thursday so they can just back a truck up and dump the chemo into it. I always wanted something like that, only not for chemo. Where were these devices back in the day?

My friends and family have been stunning. The food alone: chicken soup, chili, lasagne, spaghetti and meatballs, take out from our favorite bbq joint, Hagen Daas vanilla, and burritos and a "fuck cancer" t-shirt, banana nut muffins, beef stew. Rides here and there, help with shopping; and generously shared experience, not easy stuff. 

My son is so scared, and my husband... When he said "...in sickness and in health..." he wasn't kidding. He is broken-hearted. We have cancer. It is in our house and we will spend the next six months getting it out.