h1

In which I’m grouchy and aren’t you lucky? (In other words, skip if you don’t like vitriol)

February 22, 2012

Do I have a reason to have bitchy mood this afternoon? I am going to say yes and no: Yes, I do, and No, I don’t. Smirk.

I am overwhelmed with how many phone calls I must make, phone calls I don’t want to make. I’m overwhelmed by how sickly and hideous I look, and if you’re tempted to console me on that front, stop. I look fucking hideous. Pale, circles under the eyes, wild hair: hideous. And as a side note, the next time a waitress (how is “server” better than that, pray tell?) asks me in a cloying tone, five minutes after my food has arrived, “How is everything tasting?” I’m going to lash out an arm, grab her blonde ponytail, and smash her face repeatedly into my plate. “It! Tastes! Like! This!” If her query involved a grating California inflection (“How is everytheen taaaaasteeen, you guys?”) her ponytail gets severed with my butter knife. Seriously. What the fuck does that question even mean? Let’s break it down:

How: in what manner, I guess
Is: verb, indicating existence
Everything: the stuff on my plate
Tasting: this is where it all goes wrong.

Waiters, servers, stop asking people this idiotic, meaningless question! It’s totally insincere and makes you look like a douche. Yeah, it does.

In other news, I need a lawyer I need a decent lawyer who will handle a medical malpractice suit, and I need one now. I don’t want the guy who advertises on the back of the city bus in his shitty sage green Men’s Wearhouse suit with coordinating pocket handkerchief. I need someone decent and responsive and reliable. Help.

The lawyer I hired to help me with navigating the Byzantine Social Security pitfalls has done, in ten weeks, exactly zero. More phone calls, more good times.

Anyway, the new lawyer I will need should be able to understand that for eighteen months, I complained of acute pain and rectal bleeding, like, bad bleeding. Severe pain. And every time I visited my primary care physician, she shined me on. Even after acknowledging that, oh, yes, there is a mass there, I waited weeks and finally saw another physician. She was instantly alarmed and scheduled a colonoscopy right away. By then, the tumor was eight centimeters long and had metastasized to my liver — another element that was overlooked for, oh, six months.

I understand that I have to be my own advocate. That’s why I kept going back. But nothing happened, and now I am here, with terminal metastatic liver cancer. Prognosis with embolization? Two years. That two years has passed, and so I suppose we can sigh with relief and say, You beat the odds! But you know what it means to me? It means the clock is running out. And I am angry about it, angrier than I have been about anything in my life. For indifferent doctors. Where’s my oncologist now? I called her yesterday about some paperwork I desperately needed, left a message, and got a harried-sounding voicemail from a nurse, telling me, essentially not to bother The Doctor, but to ask someone else. Don’t bother the doctor? Since when does the doctor’s comfort come before the patient’s? Why is this doctor not managing my care? Why is she not looking for clinical trials that might help me? She’s already indicated that it’s too difficult (meaning: pain in the ass for her) to get me a referral to a facility that actually cares about patient health, but I haven’t heard from her in months. I guess that since her great solution of pumping me full of Erbitux failed, she shunted me off elsewhere, has not checked in, and is on to the next patient, whom I assume she’ll also kill.

Bitter? Yeah. Trade livers with me and see how you fucking like it.

I am overwhelmed. Tomorrow, I meet with the drones in HR, and then it’s another afternoon of phone calls and possibly smashing the shit out of some crockery.

I see my life, my stupid little go-nowhere accomplish-nothing life, and as meaningless as it is to you, it is all I have, and because I have not been assertive enough, I handed over the power over my future to the fucking Marx Brothers.

And yes, I know that no one knows the future, but I have a pretty good hint.

And no: there is actually not much you can say. I’m not trying to be flip, but I have endeavored to be positive and do what I’m told and the people in charge have put on their picture hats and gone skipping off to picnic in the fields, Tra la, tra la. You think I’m kidding. I am deadly serious.

I am angry, I am distraught, I am betrayed, I am ineffective. I am overwhelmed. I am not looking on the bright side. I am looking down a long tunnel and I want to notify every single medical professional who let me down exactly how I feel. What good will that do? Should I keep on the sunny side like a good girl, because the doctors are doing their best?

I will tell you right now that if my doctors are doing their best, they should be banned from the medical profession immediately.

Somebody find me a fucking lawyer.

h1

In which there are little ironies

February 22, 2012

Most of the time, I don’t have a lot to do. I nap, I watch Murder, She Wrote and Gilmore Girls, maybe a ghost -hunting show or two, but in general, I’m not going on outings, wearing my sun bonnet, toes in the surf. And it’s boring. You can watch only so many shows about self-important delusionals bumbling around in the dark, calling out to imaginary ghosts before you want to chuck a 7Up bottle through the tv screen.

So, why do I so hate when I have to go anywhere? The Captain very kindly took me to Macy’s for the Presidents’ Day white sale, and got me a wonderful down comforter and fluffy mattress pad, and this very beautiful duvet cover. He made the bed, and when I slipped into it, it was exactly as perfect and cloud like as I had dreamed it would be. I do not want to leave my cloud bed. I have a doctor’s appointment today, but I would much prefer to stay in the cloud bed.

Anyway, in other news, here is the notice for Steven’s memorial, posted around the marina:

20120222-093637.jpg

I can hear Steven now, snorting, “Mother… Fuckers! What am I, a fucking lost dog? Trust me, honey, you can’t afford the reward you’ll be asking for me!”

h1

In which I might be entering some sort of anger and/or grief stage

February 21, 2012

Nothing I type here today will be worth reading.

h1

In which the world spins madly on

February 19, 2012

Hello, sunshine! I can see you through the blinds. I’m glad to know you’re out there, even if it seems like I’m ignoring you.

Yeah, why am I addressing the sun? I don’t know. Hoping for some sympathetic magic the invocation of the name Ra might hold.

My boss called, and I had essentially the same conversation with him that I’ve had with anyone else I’m close to: The tumors are bigger; the labs for my liver panel look mostly normal; yeah, I need to write a will; no, I don’t feel that great; no, I don’t have a prognosis. He was very understanding, especially when I took a brief and unprofessional detour to diss the inefficiency of our HR department. I was brief! Nobody likes a complainer.

It’s been almost a year since I started this blog, this schizoid, rambling blahhhhhhhhhg of indecision, uncertainty, anxiety, occasional amusement and irrational crying jags. A year ago, I was obsessed with: not having a boyfriend; being patient while my body healed enough to go back to work; my mom and her juice-only miracle diet.

This year, this February 18th or whatever it is, I am obsessed with: how long I might be alive; the fact that I’ll probably never see Paris again; who should get my stuff, my wonderful stuff; wondering whom I might see in the afterlife, and hoping it’s not just confined to the people I used to endure, through wreaths of cigarette smoke, each Thanksgiving growing up. Like, is it going to be some awkward family reunion, where I have to meet Great-Uncle Spark, whose comprehension in life of who I might be was clouded by Cutty Sark and the aforementioned cigarette smoke? I don’t really want to hang around with him, and I’m fairly sure the feeling is mutual. Other people I don’t want to hang out with: the drunk, reprehensible neighbor who burned my childhood home (because he was drunk); my paternal grandfather (lecherous, drunk, favorite term of endearment: “Stupie,” short for “stupid”); my own father.

I love, meaning that I deeply loathe, when people encourage me to contact my father, estranged since 1995, because I’ll “regret” it if I don’t. It is acutely presumptuous of anyone outside my personal skin to make assumptions or recommendations about how I might deal with my father. Those under the misapprehension that the filial bond requires respect are more than welcome to contact my father and conduct their own relationship. If anyone still feels the urge to really, really just encourage me to repair that bond, I will just mention that my father, a genealogy enthusiast, omits me from his family tree, and tells people I’m dead.

I know I said the other day that I do not have time for grudges, and I still mean that. My avoidance of my father is an act of self-preservation, his estrangement the excision of a cancerous tumor. I equate it with stepping around a snake in one’s path: you won’t spend a lot of time hating the snake and dwelling on its terrifying qualities, you just recognize it for what it is, and keep moving.

I don’t know. I’m just rambling now. I’ve been in bed all day, I’m bored, slightly feverish, and pensively grouchy. You may not want me in your heaven, whenever that day might come. I’ll endeavor to do better.

h1

In which I’m not obsessed

February 18, 2012

About ten years ago, I went to see Jonathan Richman in concert, in Paris. The venue was a large, high-ceilinged building constructed of stone, and the place was packed.

At one juncture, Jonathan was trying to explain, in his broken French, the concept of being obsessed. Except he didn’t know the correct French word, so he said, “obsessionnel,” which is not a word. Gentle laughter came from the audience, and people called out the right word: “obsedé.” “Ohhhhhhhhhh!” said Jonathan, absorbing this new information, “obsedé. Merci!”

That scenario popped into my mind today because I fear I am becoming a little obsedée about the condition of my liver. Now that there is no medicine going in to try and check its growth, will the cancer just blossom and take over? I can’t help but think that it will. And how long will that take? Do I have six months? A year? One month? There’s no way to know! It is literally maddening.

I need to write a will. I just got some great advice on same from my friend Chris (Go out, have some drinks with friends, bring a legal pad, and then decide who gets what. Or, more directly, who DESERVES what.” Exactly.)

Some of these decisions are easy: my cousin Mary, for example, who not only ratted me out about the Cyclone, but tried to use the information to gain leverage and have an affair with the Captain — she is out. She’s also a coke whore, so would probably sell anything I gave her. That one’s easy.

Some are more difficult. My mother, for example. Eleven years ago, her mother died. I asked for, and was granted, the one thing I wanted from the estate: a painting my grandmother had done of a mountain range across the valley from her house. My mother instantly swooped in and snapped it up, saying she would keep it safe. Over the years, I have asked for it many times, and gotten a variety of lame excuses, the lamest being, “But it goes so well in my back bedroom.” I guess I will will her that painting.

As far as everything else, I’m at a loss. And I’m feeling the crush of a deadline looming, phantom or not.

I have to write out details of a funeral, lest I be propped up in some nondenominational fellowship room with maroon-padded chairs set in semi-circles and the lyrics to the hymns projected via PowerPoint onto a screen above the gladiola-bedecked cross.

I really hope I have a decent amount of time left. I know that once I get these will and funeral details taken care of, I’ll feel a lot better

I’m just a tad obsedée.

h1

In which I look on the bright side

February 17, 2012

I woke up this morning, ok, at 10 — don’t judge! — and found that I had bitten all my nails down to the quick. I am not a nail-biter, so it’s a strange sensation to have ragged, short nails. I guess they’ll grow back, but it was just startling to realize that I’d apparently had this unconscious neurotic response to stressful news.

Yesterday was a rough day. I talked to my mother, which was an exercise in keeping your head while those around you are losing theirs, probably for both of us. It is very hard to write about. My mother expressed certainty that we would see each other again in Heaven, and was sad that the interim absence was so hard to bear. I reassured her that I would indeed see her again, and listened while she cried, all the more painful in that she was so obviously trying to keep herself together. “It will be ok, mama,” I kept saying, out of a desperate need to make everything ok, and knowing that I can’t.

I emailed the Captain. “Please come over. I need you. Please come over.”

And he did, miracle of miracles. He came and sat with me as I cried, and told me things would be ok, and we talked, made tentative inroads to opening up communication again. Our mutual path is so tangled with briar that it will take a lot of careful pruning, maybe just outright hacking, to clear the way, but yesterday, he was everything I needed. He was a friend.

I can’t help but love the Captain — for a quarter of my life, he was my closest companion. We put each other through the wringer, but I am hoping that with enough brush-clearing and fresh air, we can create the space to be supportive to one another without codependence, to respect one another, to be friends. I could write pages about the reasons that I love him, but the simplest thing to say is this: it does not serve my purpose to hold onto old hurts. I do not know if he feels the same way regarding the hurt I inflicted upon him, but I hope that he does, or that we can get there.

I do not need him to be my savior, I just would love for him to be my friend. For the first time in a long time, that seems possible. I am tenuously happy.

I went to have blood drawn today, which will gauge the clotting speed of my blood, and test my liver function and kidney function, as well. It’s always been fine, and I fully expect it to be fine this time.

While I wait for the results, I’m going to make myself some motherfucking Spaghettios. Because I can. You’re welcome to come by and have some with me. That is the kind of open-door Spaghettios policy I enforce here, chez Violet.

h1

In which I face facts

February 16, 2012

CAT scan today = a big failure. That is, the scan worked just fine, but revealed that every single tumor on my liver is bigger. It’s like the cells don’t even notice the chemotherapy.

What does this mean? Nothing good. There aren’t many other treatments to try.

I’m going to bed. Cancel today, please.

h1

In which it is a bitch

February 15, 2012

Have I told you about my friend Steven? If you’ve been with me since the early days of my old journal, Spark and Foam, you might be familiar with him, but no matter: I will catch you up.

Steven was my neighbor in the marina when I lived on a boat. His boat never went anywhere. You could tell it by the patio umbrella and hanging plants on the back deck, and by Steven himself, seated on an iron garden chair, smoking a cigarette and yelling across the water to passers-by. “I see the fleet must be in!” he frequently yelled to me in his gravelly Boston accent, followed by a litany of profane insults about how I was trying to steal all his business, or how I still owed him 25 cents and a roll of Scotch tape. His favorite epithet was “bitch,” and if you used it against him, he’d pull himself up coyly, eyelashes batting, and thank you very kindly. Flamboyant? Sure. Covered in diamonds and gold necklaces, some of the dock guys called him Liberace, but even those uncomfortable with homosexuality were won over by his outrageous sense of humor, his kindness, and his admirable refusal to pretend to be anything but himself. He did not suffer fools gladly, but he held his friends close to his heart.

His boat was filled to the brim with silk settees, crystal chandeliers, a brass grandfather clock, and bouquets of silk flowers with the price left on them. I pointed that out to him once, and he drew himself up in dramatic indignance, and said, “Of course I left the fucking price on them. How else will people know how much I paid?”

The Captain and I gave him a lovely vase one year for Christmas — something the Captain had found and thought would be appropriate to Steven’s decor. Steven, anticipating a gag gift, was visibly moved by the gesture, but of course had to preserve his image. The next day, he delivered a box containing a beautiful cut-crystal decanter, and a card addressed thusly:

To the Captain and Violet (a common, flashy weed that lasts a few minutes in water and then dries up and crumbles with age)

I adored him. I would sit with him on his back deck, drinking cheap wine and trying on his sizable collection of jewelry, which he made an elaborate point of counting before I left. “You wouldn’t know anything about this,” he’d say, between puffs on a cigarette, “but truly beautiful people never buy their own jewelry.”

He had emphysema, and routinely lied about his smoking. “I allow myself one cigarette a day,” he would lie right to my face, and I would commend him, and the fiction would continue.

I talked to him on the phone about two weeks ago. We liked to gossip and insult each other, and laugh a whole lot. He revealed to me that things weren’t going too well, that the trips to the hospital were getting more frequent and that living was getting difficult. I commiserated, without totally knowing what to say. I offered my services as a ride, told him to call me if he needed help. I’d been saying that for years — he never did. We ended our conversation fondly, with a promise from me that I would visit.

Steven was on my mind today, for some reason. I decided to call him when I got home from my errands, but before I could, I got an email, telling me that Steven had died last week. You can lose someone so easily in the world; turn away for a few seconds, and you’re out of touch. And now, he is gone.

I have his cards, a few photographs, and the indelible memory of his distinctive voice. I just loved him, and I’m sure he knew this, for whatever that’s worth. I know he loved me. I really hope that if there is an afterlife, Steven and I will meet again, and revive the litany of insults that were the vocabulary he used to show his affection.

I could tell stories about Steven for days, and I’m sure he’ll make other appearances in these pages. This is an inadequate elegy, written off the top of my head, unedited or planned. Here is what I mean to say: My friend Steven has died. He was a good man, much beloved. I hope I see him again.

Here he is, at one of his ladies-only tea parties:

20120215-220227.jpg

I miss you, my friend. (Steven’s probable response: Yah, you better fuckin’ cry, bitch. It’s the only proper response to losing someone so young. Don’t think this means you get to take over my corner when the fleet’s in.)

h1

In which I am all about fun, shut up, I am

February 14, 2012

Hey, hey, happy Valentehhhhhhhhhh zzzzzzz!!!!!!

I am coming down with a cold. This downgrades my usual “meh” about February 14th to an actual, literal yawn. It also makes me super icky and grouchy, but as I don’t want anyone to be the target of my grouchiness, I have incorporated sevral elements into this post that represent pet peeves to me, so I can go back later and rail against myself in the comments.

20120214-185524.jpg
Unexplained pic

h1

In which I relax my standards

February 11, 2012

After a day of activity yesterday, I came home and climbed into bed. I deliberately pushed myself yesterday, in an attempt to build some strength and maybe a little stamina. I think it was effective. I might try some more later today.

Right now, however, I’m under the covers, guarding against the chill outside. The cat is curled up next to me, within arm’s reach, for once. I think I’m going to stay this way and drowse for a while under the guise of encouraging my liver to heal. Heal, liver, heal.

A mild thunderstorm would make this day perfect. We almost never get thunder here, so it’s extra exciting when it arrives. I’d settle for a little rain, something to justify my encampment in bed. Just a light rain, enough to hear, enough to lull me off to sleep so I can heal.

20120211-105409.jpg
The cat, emulating his ancestors the tree leopards.

Follow

Get every new post delivered to your Inbox.