Feet on either side of the line

A kiss from the rose on the grey?

As WTF host Marc Maron says, "Hey, it's life. Doesn't end well." Or as my husband says, on the days he can talk about it at all, "We're all dying honey. You're just doing it a little faster than the rest of us."

What I'm struggling to spit out is that planning around the hole you're going to leave is pretty much normal human behavior at any age. I'm younger than I would have expected, and will be leaving a sorrowfully bigger hole than I'd meant, but the challenges are similar to everyone else's. I don't need to plan for retirement, so what I've saved can go to college funds, at least. As long as I die fairly soon, I can do so secure in the knowledge that the kids will be taken care of. 

Whose future is it anyway?

Which brings me to the gigantic, self-righteous elephant humped in the middle of my American living room: The American Health Insurance System. Most expensive in the world, with oftentimes mediocre outcomes, medical bills are by far the most common cause of bankruptcy in the US.

I can't afford to bankrupt our family. But that's what the state of US health care means to someone living with a fatal illness today. No one talks about how, in the pay-to-live system we have in America, co-pays alone can wipe out a family's financial security forever. I think people would be shocked at the number of times the ill choose between living and living as long as is financially possible for themselves and their families.

I called MD Anderson—home of the edgiest cancer-fighting gadgets on the planet—and they want $200,000 up front to sign up for their fancy photon therapy. They're certainly not taking any chances on our insurance company spontaneously leaping to do the right thing.

We're fighting this uphill battle, draining my family's financial resources just as my kids are getting ready to enter college and my husband tries to ready for retirement. We have the kind of medical insurance to which health care workers are entitled, so we're atypical in some ways. I'm receiving good treatment.

But this could still bankrupt us. And ours is a universal story.

Football Stadiums of Light

All Pelee Island Stories are set on this lovely little patchwork rock.

Friendship lifts you up. Being my amazing friends, you must have noticed just how wonderful you all are, but sometimes friendship rises to a level that amazes even me.

Jane Cawthorne is giving me a book! She's publishing my (slim) collection of short fiction through her very cool Crabapple Mews Collective. I don't have enough stories to bundle for a publishing house collection, or the time to write more. Or, to be honest, the time it would take to to pound the pavement for lit mags to publish me. This is, possibly, the only way I'll actually get a book of my work made within my natural life time. And Jane raised the funds, through a whirlwind GoFundMe campaign, to make it happen.

The director of our MFA program, the esteemed Meg Kearney,  has a single piece of dogma she imparts at every opportunity. It's a sad fact that envy often acts as the black heart of a program full of talented creatives. Meg's solution is to have her students fall in love with someone else's work. Of course, I fell in literary love with Jane. Her solid, flowing prose, her subtle insights into the human condition--her work is beautiful to me and we're lucky to have it in the world.

With friends like that, it's hard to believe in a world that also has cancer.

And there's more good news--an agent is interested in my YA novel! She's only asked for more chapters, so it doesn't necessarily mean anything, but it's a good solid bite and I'm happy.

Also, my friend Sharon Wynne made me chocolate mousse. It's hard to believe in a world that has both chocolate mousse and cancer. I think I'll opt for the one with chocolate mousse.

Daily baskets of light

Several days ago, Maria Fox sent me a cd (in the actual mail!) saying she knew this music wasn't for everyone, but that when she listened, she felt immersed in a basket of light. Which is such a romantic image I of course had to listen right away. It's completely apt, and I'm listening still. I'm listening right now, in fact.

Today, I was on my front porch, looking at my beautiful banana--currently flowering in that alien way they have--and although the world remained bright the sky got dark, fast. In typical Florida fashion, a hard rain burst down. I was standing in the wrong direction to capture it all, but my banana looks beautiful in the black sky light.

This is the kind of weather that ordinarily drives my family to distraction. They get all grumpy and intractable and petulant, because they don't understand what's driving their mood. If I mention that I think it might have something to do with a low pressure front, I'll be pooh poohed silent.

But today, the kids are sweet, if a little melancholy. I'm on my second day of chemo--on a Basket full of Dark day I'll introduce you to my newest friend, the "fannypack"--but at this precise moment I'm feeling pretty good.

And that sky alone was worth getting out of bed for. A basket full of light to start my day.

I'm going to make this a regular feature of my blog. Thanks for your basket of light, Maria. I hope you don't mind if I appropriate it for myself.

On optimism and other things

I'm pretty much the poster child for pessimism, I know. Wonderful life, beautiful husband, spectacular kids. Then, bam: incurable cancer: And sometimes, when I say "I'm literally dying," I'm sure it sounds as though perhaps I'm just not trying hard enough. But the doctors have deemed me incurable. With chemo, they think they can get me a year.

And I'm trying, I'm trying! I'm taking the fucking chemo. It's awful, not to mention the requisite body modifications (aka my little friend.) But I'm doing the thing the doctors recommend.

Of course I know about tumeric. Stuff's nasty, but one dear friend is making me down it in olive oil by the shot glass. Sloane Kettering even makes some small arguments for its use. Not totally spurious. I'm interested in Metformin (a diabetes drug)'s apparently positive results with certain cancers and I'm going to approach my doctor about it this week. I might even try sour sop, for the same reasons as turmeric, albeit slightly shadier. It's not just that Snopes has declared the Graviola cancer cure UNDETERMINED.

Yes, I've heard about magnets, acupuncture, marijuana as miracle cures. And the crystals! This site has twenty-six cancer-curing crystals it's quick to hawk, right after the shocking disclaimer, "I am not a doctor / this is not medical advice."

The most important thing I can do right now is eat, eat, eat (the sad mushy fare I'm allowed) and sleep, sleep, sleep (because my body and morphine conspire against me and because it's good for me anyway). I'm doing the chemo, I'm gathering second opinions, I'm trying out all the home remedies with any semblance of gravitas. I believe I can at the very least improve my odds for longevity.

I'm trying. Do I think I'll win? Ask me a year ago.

Me, a year ago.

I'm trying!

Today's Basket of light

A beautiful friend mailed me this piece as a gift, saying "Spem in Alium is one of my favorite pieces of music; like having a basket of light woven around me." So of course I cranked it up and am letting it weave its magic. Truly lovely. Thanks Maria.

Being this

I'm writing a letter to someone which requires me to divulge the state of my health. I've crossed out "terminally" in front of the "ill" or exchanged it for ''very''. Or extremely. Because, how do you say, I'm seriously too sick to do that job I promised or nope, I probably won't be around on that date. At all. Anywhere. How do you say "I'm literally dying" in a way that doesn't kill the other person?

And then I began to realize that it's kind of none of my business to keep others safe from my news. It's just news and I'm just the messenger.

Lately, simply being the messenger has become a straight up time management problem. I decided to blog about my treatment because, as the friends around me saw, I needed one place to tell everyone what they needed to hear.

So here's where I am:

I have a Stent in my esophagus, which is keeping it open and me alive

I have a port implanted that allows them to deliver chemo  directly into the heart of the beast. Er, me.

I have chemo next Wednesday to Friday. I get to bring the meds home overnight--a sleepover!--in the form of some kind of fannypack. A fanny pack they're calling it. Sounds cute, right? Hmmmm. 

By their measurement, I'm sure a fanny pack equates to a full-on mountaineering back pack. Complete with dining tent.

Planning for a future in which you're not

You never truly know how you're going to feel about most things until they actually happen. I mean the big, nasty surprise things--like learning you're literally dying... It turns out I had no idea how I'd feel, even now as I'm feeling it. Now don't run screaming for the social workers. As far as I'm concerned, this detachment is very healthy.

Fuck talk therapy--no offense to my wonderful therapist friends--but who really needs to be talking about this shit?

What I need to do is plan. For the future, which will most surely go on in my absence.

mind: boggled

Say hello to my... little... friend

My little friend is neither. It's a port that 
allows them to pump the cancer 
meds directly into my bloodstream.

They call it a chemo port. It allows them to inject their poisons directly into my bloodstream. Apparently, this will be my friend forever. According to Moffitt, my chemo port is a little thing.

But when our local cancer facility uses the word "little," or "small," I picture how many times I need to wrap myself in the "small" hospital gown to make it fit.

Problem is, I am actually small. Go ahead, judge away about my one percenter problems, but it's true. I am small.

But this port thingy, this thing they're supposed to use as a direct conduit to my blood stream, the thing that  they've embedded into my body? It's about the size and shape of a small hash pipe.

(oftentimes, a hash pipe is to a cancer fighter what an aspirin bottle is to everyone else.So I know my hash pipes. )

Yes, hash pipes are small compared to say, a house. But they are massive compared to, say, ANYTHING YOU WANT TO HAVE EMBEDDED IN THE FRONT OF YOUR BODY.

I don't look at this bumpy contraption in the eye, because all I can think is: Get out of me. And, thanks for being there.

Yes, these things do happen to you, Tanya

I don't know why it never occurred to me that I could actually get cancer. Maybe it's a familial thing. I'm not aware of a single ancestor who was so much as diagnosed with cancer. They certainly don't tend to die of it. I remember hearing somewhere--I'm an NPR freak, so probably there--that it's an Ashkenazi jew thing. That there are thousands of 100-year-old Jewish ladies around. But my I-can't-get-cancer stance was more like a complete denial that cancer existed at all. I'm the type to get a PAP smear approximately every time we switch presidents.

Besides, I tend to eat fairly well, my smoking days are tucked safely away in the past. I'm not obsessed about eating organic, but I've always tried. I suspect we make these sorts of pacts with ourselves, without even noticing. We do all the right things and then expect some immunity from the wrong.

And that's how esophageal cancer gets you. It grows fast like the evil twin baby it is. It doesn't even occur to you to worry, until, in a month or two, you can't get a sip of beer past the baby in your throat.

Here I am, two days after staring at a full color, vaguely gynecological snapshot of my glistening, completely occluded esophagus, and I'm reeling. My husband, who lost his mother two years ago and never stopped reeling, is reeling.

I am literally dying.

Marveling at people

As this goes on--and the realization that it's all real is no realler--I am marvelling at the deep generosity and general spectacularness of my friends. My poor, reeling husband rarely has to worry about dinner these days, we're all eating well on the delicious meals prepared by friends who care about us.

Marveling

Giving Thanks

It's so weird, I have such a great life, such good friends, such wonderful relationships with all my kids. I seriously have it made. Just finishing up an MFA with a promising young manuscript.

I even take the time to appreciate it all, you know that? I, an atheist, regularly used to give thanks. Honestly, I'm all neo-American about Thanksgiving. I've always admired the way Americans actually incorporate the ritual of being thankful into their regular lives. The cute way they cite the things that make them happy when ask to make a speech about what we're thankful for.

Amidst the gratitude and optimism, it's hard not to become embittered some moments of the day. 

What am I thankful for? I'm tempted to say something barbed and poignant, like "I'm thrilled to fucking death not to be actually dead at this moment."

But the moments tick by, it's simply true.