Archive for March, 2012

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In which every man is an island

March 20, 2012

On Monday morning, an elderly man put on his windbreaker, got into his car, and drove around the perimeter of the harbor and its many marinas. When he got to the last parking lot by the beach, he pulled his car into a spot. I wasn’t there, but I’m guessing he took a minute to watch the waves crashing over the breakwater. Maybe he was thinking about his own boat, which he’d just sold for a pittance. I don’t know what he was thinking, but it spurred him to pull out a gun and put a bullet through his brain.

He was my dock neighbor for years, and although I did not know him well, we bonded over the fact that he grew up in the same tiny town in Rhode Island where my grandmother was reared. Cap’t. Ron. That’s what we called him. He was a Vietnam vet, I believe a fighter pilot. And now, he is gone. In the wink of sunlight on the sea, a shot can ring out and rob someone of his life. There is no reason to it.

The news came while I had some out-of-town friends here, dear friends who understood my inability to get out of bed, and busied themselves like bees, and then settled in to gab with me. My love for these people is boundless, and I wish we lived closer.

In other news, I had a PET/CT scan today, which I slept through. Results in a couple of days. It will help me make a decision about what to do next.

Some people are saying, “What if this is the chemo that finally does the trick?” and oh, isn’t that a nasty little game to play. I think I’m going to need some pretty damn good odds before I jump into anything else that promises a lot of nausea, hair loss and other horrible side effects that I would, of course, get. I got pretty much every side effect possible, no matter the medicine. My hair has come back, but the texture is hard and frizzy. It’s unruly. It doesn’t matter what products I use — my hair screams “witch.” And anyway, it doesn’t really matter. I’m not photographed a lot, I never go anywhere, and I’m not dating.
The hair could look like anything. It might as well all fall out. If the odds are any good, I’ll try the chemo. I don’t know. We shall see. Right now, I’m going to lie in my cloud bed and doze until this cold goes away.

I hope today holds at least one moment of magic for you.

Also, today’s my brother’s birthday. (I have not shared this blog with him, and prefer not to.) He’s a great support to me, and a great person. I don’t know what I’d do without him.

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In which I’m losing it

March 17, 2012

My mother is coming to help me clean. She can’t come right now cos she’s at the gym, but she will be here.

“You don’t sound well,” she said when I answered the phone. “Did you get your brother’s cold?” No, as it turns out, it’s just this pesky cancer! Can’t seem to shake it!

I had a transition dream last night. I’ve had them my whole life. They involve driving over a high and improbably angled bridge, always with no guard rail. Last night, my best friend Sue B was driving, and the bridge was so high, it felt like we were going to fall off it backwards. We just kept going. There was a toll booth. And then another, higher bridge. No one else was on these roads, and we just kept driving.

It seems to me that we had to get to Sacramento, which I guess is symbolic enough, and that there were many roads to get there.

I don’t remember how the dream ended.

I’m feeling today like I don’t want another round of vomit-inducing, hair-removing chemo. Largely because I can’t imagine feeling worse than I do right now. Plus: the other chemos I tried did absolutely nothing. Nothing! That is baffling to me. Me, who has no medical training.

I’m not up to it, but here is what I’d rather do:

Go to Paris
Go to Disneyland.
Go to a day spa for a week.
Listen to A Christmas Carol on audiobooks
Visit the Museum of Jurassic Technology
Have a good steak with a butter-and-wine sauce
Take a calm, leisurely sail on a little sailboat, and nap in the sun.

I guess I can actually listen to a Christmas Carol.

Here’s one last worry: my aunt said she’d take care of my funeral and I gave her very specific instructions. But now I’m having my doubts that it will happen. No, I won’t ever know, probably, but I really want something specific. Not some fucking PowerPoint slide show of shitty ’80s pictures and a hastily prepared montage board of more shitty pictures, standing next to the guest book and the disarrayed stack of programs featuring yet another shitty photo of me.

That reminds me, I have to work on my will today.

I am really trying to keep the fury at bay today, but my liver is expanding, which is both bad and hurts, and I am seriously thinking about saying Fuck it to the chemo. I cannot in good conscience allow myself to feel exponentially worse than I do now, without some reasonable odds of living more than a few months. This decision gets easier to make every day. Thank you, supporters who encourage me to kick ass and keep fighting, but I no longer have faith that there is a cure.

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Maybe this’ll work.

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In which I am no longer a burden

March 16, 2012

In my in box this morning was an invitation from Crazy Sexy Cancer Guru Kris Carr telling me I could win a chance to party with her! Woo! I’m surprised she didn’t somehow work in her friendship with Donna Karan or her appearance on Oprah, but all in good time. In case you haven’t guessed, the very perky Ms Carr irritates the shit out of me, cemented by her “confession” that sometimes (to be decadent) she might “dip [her] vegan cupcake into a glass of Champagne.” She’s just crazy like that. Yeah, I’ll party with you, Kris Carr.

Anyway. As I’ve mentioned, I turned over all my insurance info to my very kind uncle, who has been brilliant at handling it. “you should not be worrying about this,” he said. “I don’t want you to worry about whether your rent is paid, your phone bill, your cable… You should not be worrying about that.” I thanked him, and said, you know, when I get my money straightened out with work, I hope to have enough to be independent. He just repeated his statement, which is that I am taken care of, and not to worry. I thanked him. “You’re a priority,” he said.

It was hard to absorb, this generosity, for someone accustomed to being told by their mother that if I need money, I should probably sell my jewelry. (Because I am Elizabeth Taylor — please come to the auction at Sotheby’s.)

So, I talked to the nice Benefits lady at work, who was able to figure a way to get a lump sum roll-out of my pension. This is not a tremendous amount of money, especially after taxes and penalties, but it creates enough of a buffer that my budget, which has been thrown out of whack of late, is not quite as down-to-the-wire as I had feared. I was relieved, figuring that I could work out a new budget, and on the off-chance that I needed help, it had been offered freely. It was a big weight off my shoulders.

Which is why I was blindsided by a phone call I got yesterday from a relative who woke me up and started pummeling me with questions about some form I’m supposed to send in to the insurance company. It was urgent that I send this form in, urgent! I told her I had no form, and that I’d turned everything over to my uncle. Ask him. Jesus. Wtf??

She then started babying me into a happy mood by saying, “Aren’t you so happy that you’re getting this money? Isn’t it just so great? Now you don’t have to worry–you can pay for everything on your own!” I was taken aback. First, I don’t like being coddled into feeling a certain way, like I’m a distractible four-year-old. Yeah, I’m glad I’m getting the money, but it’s not like I just won the lottery. This capital, with my new health insurance costs of $600 a month, is going to disappear quickly. I mean, my salary just got cut to 60%. I am not suddenly the world’s newest billionaire.

The more and more she went on about how “happy” I must be to be able to use my life insurance to pay my health insurance, the more she stressed, in almost giddy terms, that I could pay for everything myself now, the more resentful I became, because it started to sound like she was the giddy one that I wouldn’t be a financial burden on the family.

And anyway, at the beginning of this mess, she told me she didn’t want me to be embarrassed or worry about money. About six months later, I gritted my teeth and asked her for $250. “Oh, well, I don’t have $250, but I can go to the grocery store for you!” she said, as if I was way out of bounds.

And anyway, the financial support my uncle offered me is not connected to her in any way. She just doesn’t want my uncle to pay for me. She is weirdly proprietary about his money, even though they are in no way connected financially.

“Aren’t you so happy?” she kept asking me. “You don’t have to worry anymore! Isn’t that great??” I was so baffled. It felt like being shoved out on an ice floe, no foolin. I started feeling defensive…Hadn’t I always paid for everything I possibly could have? Yes, I asked for money once, but it had been offered to me, and then was denied me anyway. I’m not giddy with happiness because we really are not talking about a lot of money. I’m hoping the money does the trick and pays for my health insurance until I die. I am totally freaked out about being perceived as a burden, which I think is an unfair characterization.

I’m getting that feeling that spurred me through young adulthood and beyond: you resent helping me? Fuck you, I don’t need you. It took me a long time to lay down that particular axe and be able to have healthy friends who didn’t resent being called upon, and who could call upon me in turn. But seriously, the implication that it’s balloons-and-cake time that I’m not going to be a burden can make me pick it back up.

It’s tiresome to help me? It’s tiresome to be dying of cancer. I don’t want to hear about how taxing it is to help me. I don’t want that help. I will not be your burden. Aren’t you sooooooo happy about that?

I have several changes to make to my will. It’s really the only payback I have, impotent as it may be.

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In which I really do try to keep it together

March 15, 2012

I’m thinking back to about a year ago, when my mother was here, inflicting her charming blend of dietary insanity and religious mania, and how much tolerance, by comparison, I had then. I largely kept my mouth shut about her deranged piles of vitamins and “nutrients” she hauled around in two packed tote bags.

When she got a hideous flu, and I suggested that she not be around me, she waved me off, from her pajama-clad position on my daybed, and instructed me to take a combination of elderberry syrup and some little starchy pills. Arnica, I think. And you know what? They didn’t do shit. They don’t do shit for anyone, and if they’re so great, why did my mom get the flu in the first place? I was sick for weeks, which was attributed to my failure to take the medicine properly. I kept my temper.

A few times, after particularly crazed pronouncements (“I met these wonderful people at church! They both wear kilts, and they know about a two-week cancer cure!”) I lost it and just started crying. Those are my two choices: temper-maintenance or weeping at the insanity oppressing me. I do have one other option, which is: anger. That is inadvisable, because it causes my mother to draw herself up in a high dudgeon and claim in a prissy, put-upon manner that I have hurt her feelings. Result: I am now evil for not respecting the office of Motherhood, and everything is now about her, exactly as she prefers it.

I mention this because she is coming tomorrow. No, of course she’s not staying with me.

I do not think she is prepared for the level of erosion my patience has undergone. She said she would clean my place on Saturday. I am preparing myself, and hiding my tarot cards, because if she screams at me that I’m a witch again, I cannot be responsible for what I say.

I think I’ve actually been pretty patient over the last 18 months. Have I had temper fits, crying jags? Yeah. You probably have, too, in that timespan. And even if you didn’t, you can probably understand that disappointing news, delivered over and over at every turn, takes a toll.

I am working very hard not to see the world around me as annoying and petty. I took my petty grievances seriously too, before my liver was taken over my tumors. I probably still do, too.

I’m just past my patience threshold as far as certain things (vitamins, being called a witch, being jollied out of things like I’m four years old) go.

I don’t want you to be scared of me. I do want you to understand how very fucking difficult it is to wake up sick, with no cure in sight, to feel shitty, and to be expected to behave like I’m at a ladies’ high tea. I don’t want to hurt anyone’s feelings. Ever. But I have so few resources available to me, emotionally. My fear of offending someone is that I will then have to make amends, which, to be frank and cynical, just equals energy I don’t have to spend.

I am doing what I can to keep it together. I try to keep it light in my communications. But I’m also the one who looks at my doctor for a reaction about how I’m doing, and sees the doubt in her eyes.

I wish I were a witch. I’d fix everything right up, get my sense of humor back, and be on my way complaining on here about how like I really need a pedicure, you know?

We can’t always get what we want.

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In which I’m on a low

March 14, 2012

Bong! Bong! Bong! Did you hear that? It was pretty loud. It’s the sound of the MRI machine scanning my brains. It drowned out the pleasant music in my headphones, and was not altogether unpleasant. Loud, though. I wore my loudest plaid pajama pants, in tribute.

Now, I’m kind of melancholy. Probably unrelated to the MRI, unless the stuff they injected me with is some kind of depressant. Unlikely.

I started a great new exercise regimen that involves: walking a little way at a time. I made it up myself, still working on the companion DVD. Anyway, I’ve been walking a bit, and climbing the stairs a bit, and it is a testament, I believe, to my youthful… Eh, I got nothing. The truth is: I started walking a little, climbing stairs a little, and my ass, which has lost pretty much all its muscle tone, KILLS! Along with my thighs. I feel like I worked out for eleven hours. That is pathetic, o my friends and brothers.

So, anyway, I’m a little bit sad, partly because I thought about how much help I need, and how that is hard, both to ask for and to accept. And because I can’t help it, I wonder how much time I have left. Sometimes, I think, Hey — maybe this treatment will work and I will have been the boy who cried wolf! That comes with its own complications, and anyway, I see the ghostly image of my tumor-bedecked liver floating like a blancmange in its little CT scan universe. Wolf!

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This is not a wolf, it is a fox.

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In which it’s an MRI morning

March 14, 2012

Feel bad for me, everyone, for tomorrow I must rise at 7:45 am — hold back your cries of horror, for I will soldier on. I must get to my MRI. Of my brain.

I had one before, but all I remember is a lot of kind of entertaining binging and bonging for a while, like my head was in a bell tower, and the selection being played was by Laurie Anderson. It was kind of cool. I felt musically inspired, which I then forgot about. Maybe tomorrow will re-inspire me.

What I should be doing is sleeping, but that is not occurring. So much on my mind today. What I actually want on my mind: nothing. Sweet, sweet nothing.

That sounds like a sleeping pill to me. Maybe two. My mind is troubled tonight.

I’m going to take a sleeping pill, sleep, then roll to my MRI in my pajamas. What the fuck? Right?

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Maybe they’ll find this inside my brain tomorrow!

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In which I don’t know and can’t say

March 12, 2012

Every time you read the phrase “my mom,” I’d appreciate it if you’d imagine the words “who means well,” as well. It’ll just save me typing time. Thank you.

My mom (… Thank you!) likes to have a lot of information about my condition and situation. This is not really surprising: she’s far away, and it’s not like I call her with updates all the time. Even if I wanted to, there just aren’t that many updates to report.

Today, my mom has decided she needs more info on my insurance situation. I am oblivious to my insurance situation. I have handed it over to my uncle, who is happy to make calls and negotiate phone trees, and get very specific information which he then reports to me, I make a decision on, and promptly forget. It’s being taken care of, that is all I know. Sometimes, I have to say yes or no to a question, but I am able to retain virtually none of the information.

My mother was not fooled by my repeated responses of “I don’t know” to her increasingly detailed questions. I literally could not answer one question, especially the one about whether or not the Benefits lady was aware of some nuance or other of health insurance. I don’t know. I don’t know. Finally, after she “offered” to call my health plan and ask a bunch of what I’m certain are irrelevant questions, I remembered that I had turned everything over to my uncle, and let her know.

It is so hard to deal with my mom. She locks onto an idea, and then won’t let it drop. She has a mental death grip on these subjects, and fails to take my repeated “I don’t know”s and pleas that I am ill, as signs that she might back down a little. It is exhausting. And I know she is acting out of a sense of needing to be involved, to help out.

Today was a day of no consequence. Nothing happened. I missed my blood draw appointment again. I lay in my cloud bed and felt horrible. Is this going to be the way it goes, now? I’m just going to feel horrible? If not, what’s going to make it better?

Today, what I would like is to:

Stop my headache
Stop my stomach-ache
Feel more energetic
Sleep peacefully, without drugs.

I had to take medicine last night, and it resulted in a long and very realistic dream about having to cater a fancy dinner party for Martha Stewart. Man, was she a taskmaster. I guess that shouldn’t have come as a surprise, but it was still rough. Plus, Herm├Ęs had given her a pair of their limited-edition boots, and she was lording it over the rest of us. (Rude.) I spent a fair amount of the dream trying to get those boots.

Maybe tonight.

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Me, exchanging texts with my mom. “What about the catastrophic medical leave transfer forms?” “I don’t know.” “What about the orange quadrant senior waffle plan?” “I don’t KNOW.”