Tag Archives: human suit

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.

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.

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.

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.

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.