Spiderwoman I ain't

Today, my secretary was in my office reading me an article she found on the internet about caffeine withdrawal. Thanks Joy, but it might have been more helpful to know that caffeine withdrawal can cause flu-like symptoms before a week ago when I was curled in the fetal position on the couch, but better late than never, right? Hmmm. Now that i think about it, "Better late than never" could be Joy's philosophy about a lot of things, specifically the carrying out of instructions, meeting reminders, deadlines ... you get the picture. But anyway, Joy was reading me this article. and well, I guess I had better throw this in now as it is sort of germane to the story of what happened during Joy's reading of said caffeine withdrawal article-- I am blind. totally. as a bat. Can't see my hand in front of my face. Not just any half-assed legally blind kind of blind, no. I'm the real deal, which should explain why Joy was reading me the article. Sweet girl, Joy. World's worst secretary, but nice.
Okay, so she's reading: yadda, yadda, yadda, yadda-- pause-- gasp of horror ... and nothing. I'm thinking ... some horrible side effect of caffeine withdrawal that doesn't manifest for a week after resumption of caffeine intake? She had an asthma attack? The Swamp Thing just crept up behind me? What? what, damn it, what! And then she says, "Do not move," and runs from my office.
What is the first thing you do when someone says "don't move?" You move, right? "don't look," and of course, you look. People should know this. It is unalterable human behavior at work here. So I push back from my desk, spin around in my chair, and punch fists in the air to fend off Swamp thing. Then Joy runs back in my office, hyperventilating, and tells me that a spider webbed down from the ceiling, horror flick fashion, and landed right on my desk. Okay, seriously, I would rather have had Swamp thing. so I jump up and squeal like a girl while Joy courageously tackles and kills the spider. wonderful woman, that Joy.
Joy disposed of the spider corpse and came back in my office, whereupon we both proceeded to make eebby-jeebby noises and pat down hair and clothes for spiders.
And now it's lunchtime, and I'm all by myself. and it's quiet. If another spider dropped down from the ceiling, there'd be no Joy. No Swamp thing. Nobody here to save me. so I'm wondering, if a spider lands on the desk of a blind woman, is it really there at all?

It Depends on Which End You're Standing at.

The Kentucky heat and humidity arrived just in time for Memorial Day, summer's traditional kick-off. Yesterday, Michael and I went out to get ice cream, which we brought back home and ate in rocking chairs on the front porch. it was a beautiful summertime evening. Yes, it was hot and humid, but it's May, so the heat and humidity are new and they are accompanied by the sounds of baby birds chirping in the bush at the corner of the house. How can it be miserable when there are baby birds, I ask you?
Fast forward to august. In August, I will not be waxing poetic about the heat and humidity. I will not be eating ice cream on the front porch. In August, I will be lying in the living room floor in front of an a.c. vent or standing with my head in the freezer because August is hot and humid and gross. And hot. The ability to appreciate heat and humidity depends entirely on which end of summer you're standing at. This weekend, I'll be at the end that has cookouts with friends, very few mosquitoes, happy-colored frozen drinks, and even a cool breeze or two.
Happy memorial Day to all.

A Beautiful Risk

On June 6th, I will undergo my fifth neurosurgery in four years. I will do this because I have VHL, a genetic, highly hereditary disease that neither of my parents has. Lucky me. I am what is considered a new mutation. I recently read that the odds of getting VHL as a new mutation are something like one in 4.4 million. What are the odds of my offspring having it? 50/50.
My husband, Michael, and I have options. We could choose to adopt. We could choose to undergo PGT, pre-implantation genetic testing, wherein fertilized eggs are tested for the VHL gene, and two or three of those without the defect are implanted in the womb. Or we could roll the dice and take our chances.
It seemed an impossible decision, and one that we struggled with mightily. After much talking, research, worrying, and more discussing, a final decision emerged. I see now that the choice was made from the start. it was the only real choice for us. It was the right answer, the only answer for us, from the moment my doctor said that we could start trying to get pregnant later this year. We would roll the dice.
We weighed all the other options because we are thorough, responsible people, and okay, because I am an obsessive worrier, but the answer was there all along.
My best friend Molly has a blog. Every month, she writes a letter to her son, Max, who gives the absolute bestest hugs of any almost-two-year-old ever. In her latest letter to Max, Molly hit on why our choice was the right one for us. She wrote, "... you never love anybody like I love you without the realization that people are vulnerable, and loving them makes you vulnerable too."
That line reminded me of another doctors appointment. this one ten years ago. It was the first appointment that Michael attended with me, and it was a month before we were to be married. I was told that I had a spinal cord tumor that was showing signs of growing and might need to be removed soon. I was devastated. How could I subject Michael to that? To the symptoms, the surgery, the worries? I loved him, so I was willing to spare him all that, and I gave him the option to back out of the relationship. Needless to say, he did not take me up on the offer. He loved me enough to go through the symptoms, the surgeries, and the worries. I learned that day, and was reminded again after reading Molly's letter to Max, that unconditional love, at its core, is about risk. It is a willingness to risk the lows for a chance at the highs, to brave the darkness to have a shot at the sunshine. I have been blessed with much unconditional love in my life. My own mother did not have VHL, had never even heard of it in fact. She has sat beside me through countless surgeries, has watched me get sick, get mad, get frustrated, and then get better time and time again. I asked her if she had known I would have VHL, if some divine being could have told her about the person I would become and the trials I would have to endure, would she have done it differently? Would she have made a different choice? her answer was emphatically and constantly, no. She loves me unconditionally, and unconditional love involves risk.
this Friday night, my cousin will be attending the graduation of his daughter's high school class. but his daughter won't be there. She was killed in a car accident almost a year ago. He lost his wonderful, smart, loving, angel-voiced daughter. Would he trade those seventeen years to make his unimaginable pain go away? No. Unconditional love involves risk.
So Michael and I have decided to take our chances. Naturally, we hope our offspring will not inherit the VHL gene. We hope he or she will be bright, compassionate, independent, have Michael's dimples and twinkling brown eyes and my hair-- Oh please, my hair. But regardless, we will love her or him unconditionally. To love anyone is a risk, it's true, but what a beautiful risk.

Caffeine Withdrawal

In preparation for surgery, I have to test for a pheochromocytoma, which is a tumor on the adrenal gland. From all accounts, it's a nasty little thing to have. I wouldn't know. Fortunately, I have never had one. But I hear it can be just terrible if left untreated. Recently, evidence has come to light that indicates the McCoys of Hatfield and McCoy feud fame suffered from VHL, and most likely from pheos. The national media (in its never-ending quest for accuracy) has labeled VHL the "mystery rage disease." Read the story about the McCoy's and VHL here.
I had a pretty fun time with the mystery rage disease thing, Emailing my coworkers and warning them not to set me off and such, but having a test for a pheo is simply nothing to joke about. You can't have caffeine for 72 hours prior to the test. 72 hours! Okay, I decided, I'm a trooper. So I squared my shoulders, gathered my resolve, and marched bravely on. That was Friday. Now it's Sunday, and I've pretty much resorted to crawling from room to room, whimpering, and moaning about Starbucks. I'd console myself with one of my other favorite things-- sex or chocolate—but those are both on the forbidden list too. My husband has promised to take me out later for an oatmeal raisin cookie. Oh yum. Oatmeal and raisins. Sounds more like an old person's breakfast than a treat if you ask me.
Somehow, I managed a few moments of lucidity yesterday and finished the book I have been working on since December 2004. It's a fantasy romance, and to be honest, it isn't exactly finished. I still have to edit the last three chapters and write the epilogue, but the story itself is finished and on paper. yay me! Once I get the blurb written, I'll post it here. Then I'll write a synopsis, query agents, and move on to my next writing project. None of this should be attempted, however, until tomorrow, blessed tomorrow, when I can have coffee again. A cafe mocha and all will be right with the world.

Blog Therapy

A few weeks ago, I was out of town, at the hospital having my regular six-month scans. I already knew that surgery was imminent, it was only a matter of how soon. It was early in the morning, 3 a.m. I didn't want to wake my husband, but I could not continue to lie in bed, alone with my thoughts and the too familiar specters of fear and anxiety. I got up and logged onto the internet. I surfed my usual blogs-- those of people I know outside of the blogosphere, and those of people whose writing voices and willingness to share their day-to-day with me makes them people that I enjoy having a visit with. And suddenly, I was home. I might as well have been sitting on my couch with my laptop, which is my usual Sunday morning routine. The dread was gone. It had slipped out, defeated, without me noticing. What the future held for me got lost in the mundane details and sometimes profound musings of the strangers I know so well.
Now, I have joined the ranks of the bloggers (somewhat belatedly, I realize) because their is power in the written word, no matter how it's written or how it's delivered. Power for both writer and reader. Power to touch, comfort, move, amuse, and to both provoke thought and to hold thought at bay. Not one to regularly leave comments to my blogging friends, may this serve as my thank you.

Approaching the First Hurdle

Getting pregnant, as any woman suffering through infertility issues can tell you, is not always a simple bing-bang proposition. There is often a certain amount of prep work that has to be done first. In my case, that prep work involves surgery on my endolymphatic sack. What's that, you ask? Where's that located? It's in the inner ear. Yes, that's right, the inner ear, and yes, I do know where babies come from.
I have a disease called Von Hippel-Lindau, which causes hemangio blastomas (a type of tumor) in various parts of the body, one such part being the endolymphatic sack. It is advisable for any woman with VHL who is planning on becoming pregnant to get any actively growing tumors removed beforehand. So, that's what we'll do on June 6. The kicker is that I had this same procedure before, on the same endolymphatic sack tumor (ELST), and the little bugger came back. This is not at all a pleasant procedure. It requires two surgeons, an ear surgeon, who will do the drilling—most head surgery requires drilling) and a neurosurgeon, who will actually handle the tumor removal. My most valiant attempts at positive thinking and humor could not make this procedure sound fun. It's not. And the recovery is a bitch. But there's one thing that does make this time a little easier than last time: If I view this surgery as the first step to getting our son or daughter, then I can blink back the tears, swallow the frustration, squash the fear, and look past this first hurdle to the future that lays beyond, a future full of bedtime stories, baby booties, and teddy bears.

The Empress card and wanting it all

It all started on October 31, last year. All Hallows Eve, Halloween, Samhain, whatever you want to call it. It is historically the Celtic New Year, and the time to divine for the upcoming year. As an amateur Tarot reader, I always do a reading at this time. I wouldn't call myself amazingly gifted with the Tarot, but I have had readings of uncanny accuracy, and Samhain has proven to be a particularly effective time for a reading. Last October 31st, what I got was a reading full of baby cards, at least, cards that could be interpreted that way; three of cups, nine of cups, princess of cups, the Sun, the Star, and in the outcome position of the Celtic cross spread, the Empress, symbol of feminine creation. I am an aspiring author, so convinced myself these cards indicated achievement in my creative endeavors—not a baby! Definitely not a baby! It isn't that I didn't like babies, babies are great—other people's babies. For short periods of time. While they're sleeping. It's more that I just never have been what you'd call maternal. My husband and I have been married for almost ten years, and have been—and are—perfectly content without a baby.
But something seemed to happen in my mind after that Tarot reading. I'd hear a crying baby in a restaurant, and wasn't so much annoyed by it as ... well, moved. Interested. Curious. Suddenly something I had never considered became something I desperately wanted. So that's where I am now—31 years old and for the first time wanting a baby. Oh I still want the career as a writer, most definitely I do. I guess I don't want anything more than a lot of women want. I want it all. This blog is my attempt to figure out how the hell that happened and what the fuck to do about it.