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.

Later, in Literary News

A terminal diagnosis makes you do odd things. When they first tell you that your life span, with treatment, is approximately one year, it seems the only sane response is to run around shrieking. But running around shrieking gets tiresome very quickly. Eventually you start to feel silly. You start wondering: what's the hurry? Still, I managed to freak out for a solid month or so before realizing that I have this gorgeous, happy life, and I'd better live it as well as I can, and not just as long as I can.

And wonderful things are always happening. Not the least of which is that a few of my favorite writerly people have had some happy successes lately:

Jordanne Fuller, my own, grown up baby girl, has garnered a lot of attention for her fantasy stories, publishing a zillion pieces of short fiction in several anthologies. She has a unique, witty voice and a deft touch with weird, dark stories. I'm very proud to be her weird, dark mother.

This gorgeous and strange deck of cards is entitled the Family Arcana, and it comes straight from the brain of one of my favorite mentors, the menschy Jedediah Berry. The Family Arcana is a surprisingly riveting story about a family in crisis; a family that would be very comfortable in a Shirley Jackson novel, a family whose stories can be shuffled and strewn about randomly, and yet still arrive in your brain as a cohesive narrative.

Inge Trueman, my lovely sister in Crabapple Mews Collectivity, is launching her second novel, When the Wheels Fall Off, today. It's a sequel to her wonderful A Root Beer Season, which I read with great enjoyment. I highly recommend you spend some time with Sonja Pfeiffer as she comes of age at the local A&W.

Extra points for people who remember drive-in restaurants.



Lastly, my collection of short stories is now available in soft cover from Amazon's Createspace, and will be available on Amazon proper in a few days. The copies created by the Collective have been held up by the literary mavens at Canada Customs. I assume they're all occupied with pouring over my masterpiece, and that's why they've kept it so long. Unless my dear Jane Cawthorne, another writer whose work I greatly admire, threw something else in the box that Canada Customs found even more interesting than my work.

If you do decide to buy a copy, enter 5Y6JL2QV for the friends' discount.

And if you have literary news of your own, please share in the comments!

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.