Counting Down the Hours

Now in the “counting down the hours” homestretch until my appointment with the head-throat oncologist tomorrow morning. The wait has been interminable, full of antsy impatience and dread.

On the one hand, I’ve been finding myself trying to savor odd little moments, like the view of the late-afternoon city skyline through the train window on my commute home from work or the comfortable peace of sitting beside my husband on the couch watching a movie on the television.

And then there are moments I definitely did not savor.

Two of the meds that the ENT prescribed me last week–a short course of a powerful muscle relaxer and a tapering dose of prednisone–ran out a couple days ago. It seems together, they were keeping the excruciating headaches at bay. The pain came back Tuesday night, so bad I was reduced to tears as I waited for the combination of Vicodin and a less-powerful muscle relaxer to blunt it. I’d been without this particular intensity of pain for a week, after experiencing it almost daily for the last several months. It’s amazing how quickly the body forgets pain. I’d forgotten how utterly draining and debilitating it is. I don’t particularly appreciate the reminder.

And then there were the numerous episodes of emotional fallout.

Nighttime for me is always the worst. Might be because I’m one of those unnatural creatures, a morning person. But at night, if I don’t drift off immediately–and I rarely do, as I have been a longtime insomnia sufferer and the tumor hasn’t particularly changed that–my mind spirals out worse case scenarios behind my closed eyelids until I’m overwrought and exhausted. And sleeping is even harder now because the tumor precludes the possibility of sleeping on my left side and makes it difficult sometimes to remain prone. If I shift over onto my left side in my sleep, I’ll inevitably jolt awake from a panicky sense of suffocation because I can’t draw any air through my nose. Even if I do happen to start drifting off, just the sounds of my own labored breath can sometimes wake me.

So, yeah. I want to get the ball rolling on getting this thing out of my head. But I’m also wishing I could have just a little bit longer to enjoy the small bits of day-to-day tranquility that I used to take for granted before I have to embark on the next step of this battle.

Bucketful of Thank Yous for Mammoth-sized Help from…Everyone

I consider myself to be fairly cynical and jaded, but sometimes, people surprise me. Right now, I’m beyond surprised. I’m thunderstruck, bowled over, moved to tears–a lot of tears–by the immense outreach of support I’ve received from friends, colleagues, and complete strangers.

It’s humbling and uplifting, being the recipient of so much compassion and generosity. I keep trying to find some better, bigger way than “thank you” to express the huge, expansive feeling in my chest, come up with words large enough to encompass the magnitude of my gratitude and articulate enough to describe how much your support means to me.

And I am having utter and massive word fail–which, on the writerly front, is kinda dismal. But on the campaign to kick cancer’s butt front, I’m calling it a big win.

So: Thank You.

A Little Help From My Friends

Now that I’ve had a few days to deal with the first round of this c-word emotional roller coaster ride, I’ve started to dwell on other, more pragmatic, issues. Like OMG, how much is it going to cost to pay for my treatment and how the hell are we going to afford it?

Thankfully, we do have health insurance through my day job. But as I’ve commented upon occasion, it’s been steadily decreasing in quality, flexibility, and comprehensiveness of coverage while exponentially increasing in cost over the last several years. Likewise, due to state budget issues and the horrible economy, I haven’t received a cost of living increase–although I have been furloughed!–in the last four years. Bottom line is, the out-of-pocket cost is going to be quite steep, and we were already in pretty desperate financial straits before this happened.

So here’s the uncomfortable squirmy part. I really don’t like shilling myself, but as a writer, I’ve had do it on multiple occasions, and I hope you’ll forgive me for doing it now.

Folks have asked how they can help, and honestly, right now, the best and most appreciated way would be to encourage people to buy my ebooks or write a review on Amazon if they already have.

My Short Story Collections:

For folks who’ve bought print copies of Returning My Sister’s Face, thank you. However, something I haven’t mentioned publicly before is that I haven’t received royalties owed from Norilana, the publisher, for the last three years. Norilana is a small, indie publisher, and I know Vera has gone through a very rough time, which is why I haven’t felt it necessary to bring this information to light. Also, I did get ebook rights reverted, so I have been earning royalties on ebook sales of RMSF. But at this time, sales of either the hardbound or trade paperback versions won’t help my financial circumstances.

I have enrolled RMSF in the “Kindle Bookmatch” program so anyone who purchases or has previously purchased it as a print book from will be able to get the Kindle version for $2.99, which is $4.00 less than the normal list price of $6.99.

[Edit (11/2/2013): I’ve now acquired all print rights back from Norilana for my Returning My Sister’s Face collection, so in addition to ebook royalties, I’m now receiving royalties for trade paperback and hardbound sales, too.]

Individual Short Story ebooks ($0.99 each):

Thank you, everyone.

[Edit: For folks who have asked about my direct PayPal address, it’s: Thank you again. I’m utterly overwhelmed by the wave of support and kindness I’ve received.]

“C” is also for Coping

Things I have learned about coping with cancer this week:

  • Keep a large supply of tissues on hand all the time, everywhere, within reach. And premium tissues–the soft, thick kind–are worth it. The industrial, near-unto-sandpaper variety, not so much. (Ow.)
  • On a related note, switching to waterproof mascara for a while = good idea.
  • No matter how desperate I feel my need for information is, some things–which, furthermore, may not even be relevant to my case–I’m not emotionally stable enough to handle right now. After terrifying myself multiple times in the last few days, I’ve placed a moratorium on me Googling certain search terms until after I’ve met with the Emory oncologist.
  • Little things can be surprisingly life-affirming.
    • Applying sunscreen religiously every day is a necessity for me because of my Lupus/MCTD. But I’m also fanatical about it because exposure to sunlight’s UV rays is the single largest cause of signs of aging in skin, i.e., wrinkles. I’m vain. I want to still look pretty when I’m 94+. Sunscreen means I plan to make it to 94+.
    • Matthew took me shoe-shopping. A pair of new shoes means I fully intend to be sporting fashionable footwear next month, and the month after that, and the one after that and that and that. Shiny, life-affirming footwear:
  • While maintaining as much of my everyday routine for as long as I can is a good thing–my routine grounds me, helps me focus on something other than my terror and uncertainty–however, I’ve discovered and need to keep in mind that autopilot isn’t so auto right now.

    Yesterday, as I was getting ready for work, I almost put a half-full drink carton in the glasses cupboard instead of back in the ‘fridge, applied concealer with my eyeliner brush and accidentally dragged my concealer brush through a dollop of sunscreen, dropped my (hot) curling iron, and started getting into the wrong car in the garage. o_O

  • Which leads to: use more than one method to keep track of medication schedules.

    Holy crap I’m taking so many pills! And each has its own special dosage timetable and instructions: Once a day, twice a day, every six hours, with food, with a full glass of water, yadda yadda blargh. Hell, the prednisone is dizzingly confounding all by itself: two pills twice a day for three days, one pill twice a day for three days, one pill daily for three days. *thud*

    So, yeah, my day-per-week pill container just isn’t going to cut it. I’ve started keeping a log on my calendar to indicate when I’ve taken what and setting reminder alarms on my phone to remind me when I need to pop something.

Thank You and Why I Am Not Naming My Tumor “Toomie”

First and foremost, I wanted to say that I’m overwhelmed and touched by the wave of compassion and concern I’ve received in the last couple days. All the comments and messages and emails you’ve sent are truly bolstering me during this time when I’m very much floundering.

I wish I could thank every one of you individually for your outpouring of support, condolences, and offers of help, but I’m still shell shocked right now. All my responses and thought processes are wonky and unpredictable; I don’t seem to have the emotional reserves to respond to folks without breaking down again. And I’m really, really feeling done with the constant waterworks.

Next–and I don’t know if this counts as “wonky and unpredictable” or it’s just how I am…both, probably–but I thought for a bit about bequeathing a cutesy pet name upon my tumor, Toomi or Mortor or something ridiculous like that, in order to defuse some of the terror it holds over me. But in the end, I decided not to.

Reason the first: My natural sensibilities veer heavily towards the weird and macabre, and I can see myself actually starting to think of it affectionately if I did so. Totally twisted-wrongness there, because:

Reason the second, the crucial vital reason: This tumor is my enemy, and I don’t give pet names to things I despise.

Folks who know me well know that I have a temper. Folks who know me really well know I have a relationship with my anger; I’m actually fond of it. Anger clears my head, blots out fear and pain, keeps me from from being a victim. It drives me to act and rail and fight instead of shutting down and being trampled over by Bad Things That Happen.

I wish I were more angry right now. It’s come in flickers in the last couple days, but I can’t seem to hold onto it.

I think it’s coming more often, though. I hope so. This horrible thing, this tumor growing in my head deserves my hatred, my rage for what it’s doing to me, for the pain it’s already caused me, the pain it will inflict on me yet, and for what it may ultimately take from me.

I want to be so very, very angry at it.

The C-Word or “C” is for Cancer

I debated whether to write this post. I’m quite a private person, and I’m feeling rather raw and, frankly, terrified right now–not things I like showing to folks. But the writer in me thinks I need to get this out, put my words and emotions on the page. And I’m listening to her, because she’s the only one in my head making any sense right now.

So, I’ve been struggling with blinding headaches for the last several months–since June–that has recently also become persistent sinus congestion and significant loss of hearing in my right ear. I thought originally it was a bad dental crown, since the timing coincided, or possibly TMJ, since the symptoms seemed to point in that direction.

After seeing a dentist, general practitioner, ENT, and oral surgeon; and being prescribed three (now four) courses of antibiotics, steroids, and a variety of narcotics to help alleviate my pain, they took CT scans yesterday.

As it turns out, the culprit is a malignant, fast-growing tumor, around 6cm, in my sinuses and hard and soft palate regions. In short, it’s cancer. They don’t know what kind yet so can’t make a prognosis. The ENT who ordered the CT scan said that surgery–ASAP, immediate, urgent–to remove the tumor is my only treatment alternative at this point. Whether I require chemo afterwards depends on the type of cancer it ends up being.

I have an appointment to see a head-throat oncologist at Emory on Friday morning to go over what happens next, what type of tumor this likely is, all the questions which are boiling over in a deafening cacophony in my head.

I’m fluctuating between tears and numbness, terror and resignation for the battle ahead. And I’m really, really fed up with all the crap my human suit keeps throwing at me.

The Glamorous Writing Life: Drugs, Unhealth, and Not Drugs

There’s something I’ve beep shying away from posting publicly about. I dunno, but I kinda feel like if I mention it in public, it gives it more credence or tangibility or something, plus I’m hyperaware that I might be overreacting or experiencing a hypochondriac medical-intern effect. But then, what’s a blog for if not for over-sharing every now and again?

Basically, I’ve felt for a while now that I’ve been losing my words. Beyond a motivation or story flow issue, I feel like I’m perpetually groping to communicate anything. Frustrating beyond belief, yes. And also utterly terrifying.
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OutlantaCon 2012, Yoga, and Balancing the Writing Life

Had a great weekend at OutlantaCon. Got to be on panels with fabu folks like Kayelle Allen, Kiernan Kelly, Dennis Upkins, Kage Alan, Paul Bright, and Shae Connor—some of whom I’ve known for years and some I met for the first time. I’m bummed I wasn’t able to catch up with Lee Martindale, though. Somehow, the stars never aligned.

Did have something of a hectic, panicky morning on Saturday, though. Lying in bed at 9:20AM, idly scrolling through the OutlantaCon schedule app on my phone, I realized I’d somehow missed being added to a panel: “Social Networking.” That day. At 10AM.

I woke Matthew with a yelp and chaotic scrambling ensued. I did make it to my panel on time—with five minutes to spare, even—but, of course, had absolutely nothing prepared.

Then again, I actually did some prep for my “Job By Day, Writer By Night” panel on Sunday but promptly forgot to bring up one of my talking points, which is ironic as it was on the importance of making time to do the little things like eat and sleep and exercise while juggling the myriad hamsters of writing and the day job so as to be able to maintain focus and productivity. So, yeah, unfocused. But my fellow panelists, Shae and Dennis, had it covered.

Sorta been feeling blah for weeks now. All year, really. Between having the worst lupus flare-up I’ve had in ten years and the rigors of the legislative session, I’ve been utterly wiped, which has not done great things for my emotional equilibrium. But the session is well over, I started doing yoga again, and have a search party out hunting for my absconded motivation. Here’s hoping the rest of 2012 is better than its beginning.

U.S. Health Care System Does Not Play Well With My Stupid Human Suit

So the inevitable that I’ve been dreading since the state, in all its wisdom and compassion, decided to drop the health care plan I used to be on—limiting my viable, affordable choices to one HMO system—has happened. My current cocktail of meds is no longer keeping me healthy, happy, and hale. Actually, it’s been happening for a while, but I’ve been trying to adapt and adjust on my own. But it’s hit the point where I need to do something about it. My emotional equilibrium has veered off kilter, and aside from the problematic mood and sleep issues, I’m seeing a corresponding impact in motivation, productivity, and general engagement with the world.

I need to see a doctor to discuss, evaluate, and adjust my meds. Problem: I no longer have a doctor, as I lost all of my previous stable of them when I was forced to change health care plans. And I have nothing to go by as far as who to switch to. I may as well be tossing darts at a list of names. And considering my past bad experiences with p-docs, which have ranged from useless to malpractice-level incompetent, the prospect of random luck favoring my selection of a new doctor does not fill me with confidence.

Still, I’m thankful that my lupus/MCTD continues to hold stable. I do have a rheumatologist. Because, well, if I didn’t, my immune system would rise up and try to kill me in a fit of misguided zeal. But I’m having to pay four times what I used to for fewer services and a lesser degree of monitoring, a state of affairs that I expect will be amplified with any new doctor I see under this health care plan.

This whole thing is aggravating and dispiriting—which, all in all, is an ironic catch-22.

When the Cosmos Drops Anvil-sized Hints, I Do Yoga

I’m not one to scan the skies for mystical planetary alignments or scour my daily horoscope for helpful hints or seek out signs and portents in my everyday life; however, I think the cosmos wants me to resume my long-neglected yoga practice. Yes, the bathroom scale has been mercilessly mocking me for a while now, and I’ve noted how ascending the three flights of stairs to my office always makes me out of breath these days. But I normally just put from mind such human suit issues, because that’s really not where my priorities lay.

But, due to an odd confluence of events, I’ve had yoga at the forefront of my consciousness:

  • At my dentist appointment, my dental hygienist strikes up a (mostly one-sided) conversation about his daughter starting a yoga class and wanting him to join in, with him being dubious about it being a beneficial form of exercise and not some flaky new age pastime. I felt compelled (after rinsing) to chime in my endorsement of it which dovetails into a discussion of stress, teeth grinding, and relaxation techniques. It seems I’ve begun grinding my teeth. Minor now, but not healthy, and indicative of possible underlying stress issues.
  • While I habitually gate out superfluous auditory stimuli, a radio ad espousing the virtues of exercise, particularly yoga, in combating various and sundry health issues, including stress, catches and keeps my attention during my morning commute.
  • And the clincher, as I’m musing on stress and teeth grinding—and that I’ve written less than 1,000 words since the legislative session ended—I get an email at work about a weekly yoga class for state employees starting up right here at the capitol in June. After a bit of waffling, I email a “sign me up” confirmation. I mean, it simply can’t get any more convenient than yoga at my workplace. I won’t even have to set foot outside the building to attend.

    Then, after three weeks of unproductive writerly floundering, the words, they come, as I’m galvanized to write a training scene for Dragon Queller.

Okay, I get it already. The cosmos has spoken. Yoga good. Ohhhmmmm.