I'm Literally Radioactive

A pretty pretty PET.
 (not mine)

As a deliberately happy person, recently diagnosed with terminal cancer, I sometimes teeter between a kind of prophylactic pessimism and its opposite, a crying out for hope. This is one of those times.

I had a PET scan today and as I write this I am literally radioactive. Under doctor's orders to not touch babies or pregnant women. I'm extending the courtesy to my family, of course and, well, pretty much everyone I encounter. Or would encounter, since I'm staying home.

The first rule of PET scans is that the prettier they are, the worse the news. My first scan was a lovely thing to watch. Like zipping through a cross-sectioned christmas tree in space. Splashes of color—intense pinks and blues and greens—identified the tumor and its metastatic progeny. And those fuckers were everywhere.

But that was taken in June, when I was first diagnosed. I'm feeling much better these days. I keep most of my food down, most of the time, which is a pleasant change. My weight is within five pounds of normal. So I'm optimistic.

Which poses a problem.

Most of the time I'm sure all of this cancer business is just something I imagined during a notably peculiar bout of indigestion. I feel silly that such a fuss is being made over me; I worry that I'm taking up a chemo chair that an actual sick person might need. It's called denial, and I'm finding it the most nourishing of the Kübler-Ross food groups.

But what if my PET christmas tree has grown more decorations? Or worse, what if my improvement is exactly what the doctor expected, and well within the confines of my shitty prognosis?
I'll let you know. Until then, I'm optimistic.

In happier news, I will be hosting guest bloggers on the topics of death and dying. If you have an essay, a piece of flash or short fiction, a published study or freshly baked cookies to share, contact me here. Actually, if you have slightly stale cookies, contact me here.

I am happy

Photo credit: Hilary Flower

Cancer sucks dog balls. That said, I've had many, many opportunities for joy since my diagnosis. The best, most recent, resolved itself yesterday:

On Monday, my most dramatic symptoms seemed to return with a vengeance. Food got stuck so high in my throat that it constricted my breathing until I was able to eject it. Terrifying. My long-suffering oncology nurse checked me into the emergency room at Moffitt, where after what seemed a lot of dithering (and what actually amounts to a frightening dearth of staff) they fit me in for another endoscopy. It turns out the stent that was keeping me alive was no longer being kept in place by the cancer.

Upshot: the cancer has shrunk! I can now eat normally, as long as I chew carefully and remember to sip something at the same time. I'll be surprised if I don't need another stent before long, but at this point I'm happy to be able to eat. Which is something most Americans should be thankful for, I suppose.

Here's another ridiculously happy development: I'm soon to be a published author! My wonderful friend Jane Cawthorne and her amazing, brilliant writers' group the Crabapple Mews Collective, have put together this beautiful, professional-looking collection of my short stories.

These stories are linked by place; Pelee Island, where I spent several formative years.  My dear, talented friends Thomas Hallock and Julie Armstrong have offered to host a reading for me as part of their writers' collective. The latest breaking news is that St. Pete's exquisite Craftsman House has agreed to host a book launch for me as well.

In case you think Jane is my only wonderful friend, think again.

This gorgeous, baby-fascinating design
is made entirely of organic materials.

The lovely Surya Sajnani, of the gorgeous, green Wee Gallery (featured at different times in Anthropoligie and MoMA) turned her prodigious talents to gathering up funds to help me keep my house clean for the next six months. Without going into revolting detail, suffice it to say that chemo doesn't lend itself to a clean bathroom, or the energy to get it that way. And yet, it's critical to someone who is so immuno-compromized that she breaks out into a glowing crop of whiteheads exactly one week after her bi-weekly three-day chemo treatment.

But that's not all I have to say about the Sajnani-Pintos. David Pinto has been a careful and extremely insightful first reader of my work. All writers know how invaluable the advice from a smart reader and fellow writer can be. Surya and Dave have spoiled me rotten, and neither would admit it for a second.

The incredible Hilary Flower.

And they're not alone. My dear, too-generous-for-her own good Hilary Flower, always at the ready with delicious phở and a ride and moral support and smoothies—and anything else I need—was a quiet accomplice in the Germ Free movement. 

The inimitable Mary Harris.

With three kids and 9/10ths of a doctorate in Hydrogeology, she has a few other things to do with her time.

My dear Dr. Mary Harris, another partner in that crime, always has the perfect something at the ready, whether it's a cheery activity for the kids or a great Miso mix or a tasty, esophagus-clearing San Pellegrino or the latest scholarly article on alternative remedies—or the loan of her wonderful  sister in law who also happens to be a gifted radiology oncologist. Mary's SIL, whom I've taken to calling "Dr. Kendra" spent an hour on the phone with me as she navigated the wilds of Montana with a car full of littles.

My dear Dee.

Dee Gill is another friend who's helped me through the worst days. When almost nothing would go down my sticky stent, she took me out for oysters, in the middle of the day. She's been there for me in so many ways, it's hard to itemize them all. And she was one of my very first, first readers, always ready to listen to me talk about my work, beer goggles at the ready.

Meanwhile, all my lovely friends are working in concert to keep my family fed and my weight up. We highly recommend the Take Them a Meal site, which allows people to co-ordinate these generous efforts. Having friends who are foodies is the most spoiling thing that happens, most days. My dear friend Jen Pace is battling breast cancer and they're using the same site for her... If you can, log in to Take Them a Meal, enter Pace and meals, and take Jen a meal.

Our dear friends the Stoicis are always there for us too. Here's a picture of our happy kids at Busch Gardens. Times like these, happy kids are a joy beyond all others. I know my dear friend Dr. Roxana Stoici is greatly affected by my prognosis, but she swallows her pain and uses her expertise to keep close track of things like my controlling my nausea, my own pain level,  and my daily bowel habits. Now that's friendship ;)

Oh, it seems a minor point, now, but I received my MFA in Creative writing from my beloved Solstice in July. The wonderful people at All Children's Hospital spoiled me rotten over this, with balloons and flowers and sweet congratulatory notes. Maren Twining, Candace Fennel,  Stephanie Smith, Shannon Gower Bethany Peters (whom I don't know but makes kick-ass salads) Thomas Mueller and Maxine Sutcliff have been so generous it's humbling.

Maxine even facilitated our use of a beach house in Englewood, where the kids saw five baby sea turtles scrambling to the sea, and were able to untangle one who'd gotten trapped in a clump of seaweed. It was wonderful to see a creature we thought was dead come back to life and fumble on its inexorable way to the water.


In the great tradition of saving best things for last, my wonderful son Aaron and his equally lovely wife Magali are due to deliver my first granddaughter tomorrow. If she's a traditionalist, she'll arrive several days late, but at least we get to expect her! Aaron and Mags will be absolutely fantastic parents, like my daughter Jordanne, so we can expect great things from the next (ginger?) member of the family.

These are not the only wonderful things that have happened. My grown up baby girl, Jordanne Fuller, has become a published author—more on that in another forum—and my husband has started a PhD in Human Genetics at Clemson, which means he's going to take over the planet in about four years. Lucky planet.

Oddly, life is good and I am happy, most days, most times. Cancer is absolutely not a gift, but it sure helps you appreciate the gifts all around you. My gifts are in the form of friends. I have forgotten some in this post. Like Marilyn Marquez Mercado, who is always ready to cheer me up with happy video of adorable animals being adorable.

Luckily, there's no limit to the number of posts I can write, the number of friends I can acknowledge, the amount of happiness I can share.

Incomplete dream application (1288)

That is, verbatim, the subject line of the email I just got from the Dream Foundation, an organization that grants wishes to people facing a premature end of life.

Momentarily, I wondered at the error code. How incomplete was my dream? Was it a Secret-esque oversight, where I'd failed to imagine my way to normal health and would now be punished―with untimely death―for my inability to manifest a proper future? Had not been positive enough to live? Some wise soul shared on Facebook that "We Are Never Dealt A Hand We Can't Play." I wanted to offer this wag to trade hands with me―I suspect hers is better than mine―but I was too daunted by her complete lack of self-awareness to try.

Then of course I realized my dream wasn't actually to stick around for a normal lifespan--I'm not an idiot--but to simply do something nice for my kids. Take them on a nice cancer-perq-funded dream trip.

But dreams are limited and applications can be denied, so I'll say no more about it unless something good comes about. Completing that dream application now...

You are very, very, very angry

You, are angry. You have never, in fact, been angrier in your life. You're angry at the elderly, for their thirty extra years. You're angry at the bitter, for their wasted time. You're angry at the heedless, who complain in front of you about their lives.

Tanya smash

You are angry at the future, for going on without you.

You are angry at your husband, for his inability to understand, for his every wasted word, for his getting to go on after you're gone. Your husband is angry. You are angry at his anger.

You are angry at your children, for needing you far beyond however long you can promise to be there for them. You are angry because these promises, the daily, mundane promises of parenthood, are specifically denied you.

You are angry at your mother, who seems to be coping through an artful blend of denial and absence. You are angry at yourself for behaving the same way.

You are angry at everything, but most of all, you are angry at yourself. You are furious, in fact, to the point of clenched-fisted, nails-dug-in-palms, fitful paroxysms of self-loathing. You have always, always always! stopped just short of fulfilling your own promise. And now this: The coup de gras. The moment you were going to step back into the workforce, start kicking into the kids' college funds, sell a book or two. Write a few more . . .

Smash! Terminal diagnosis. Smash! You're set to abandon your children, your husband, your mother. Your life! Smash.

You have always been a positive person—you consider happiness a choice and you've always chosen it—but there are limits to the logic of this practice. How positively can you spin an MFA you can't use, a trilogy you'll never finish, a life you'll never live?

Smashing.

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