The Green Light

Yes, it seems I did vanish from the blogosphere, but I am back. My initial absence had to do with a plumbing nightmare at our house, which is not the topic of this entry, but certainly will be in the future because seriously, I have much to say on the state of plumbing in America. Then I was incommunicado because of a wicked bug I must have picked up somewhere. Let's just say "projectile vomiting" and leave it at that. And then there was my scheduled absence, which I was unable to announce to my maybe three regular readers because of said plumbing and vomiting issues. So after much ramble and preamble, here's the point of this entry.
"Go ahead and get pregnant." Those were the words of my neurosurgeon-- let's just call him Dr. Overly Cautious. This is an extremely big deal. It's the equivalent of him throwing us a baby shower. Everything that could have gone right during my week of appointments at the National Institutes of Health did. My hearing has improved to pre-E.L.S.T. surgery levels, the top-notch urology radiologist confirmed that my abdominal CT scan showed perfectly healthy kidneys, adrenals, pancreas, and liver, and of course there's the neuro appointment wherein I got those famous words: "Go ahead and get pregnant."
Michael and I had been withholding any excitement about procreating until after this appointment. And now, I'm sort of terrified because holy crap—we really can do this thing. I guess I never really thought we could, and so wouldn't let myself get too excited about it. A couple of things helped me realize that yes, we really can do this. First, Molly and Dan are the absolute best friends that anybody could ever have—ever! We went to a baby store in Bethesda, and Molly very patiently showed me all the cool baby gadgets that proved to me that the chances of me accidentally drowning my baby in the bathtub are pretty slim. Like, they make tubs and things to prevent it! Who knew? Well yeah, probably everybody, but I didn't. Molly, I love you. And then there's Dan. Dan talks fairly constantly. I'm sure he says lots of profound things, but they sort of get lost in the static, but he happened to have been profound at a time when I must have been paying attention. He told me about this blind couple (both parents were blind) in Kalamazoo who had three kids and how well they managed. Sure, I knew blind people had kids and did it just fine. I even know some of them, but Dan managed to say just the right thing at just the right time, and I hope he knows how much I appreciate it. And then, driving back home to Kentucky, we were listening to the Cubs game on XM radio. The Cubs became the first National League team to clinch a play-off spot. That's the Chicago Cubs, people, the ones who haven't won a World Series since 1908.
A clean bill of health, the green light from my doctors, and the Cubs are in the play-offs-- that's just about all I need in the way of signs from the universe.

Find an original way to insult me, would you?

I had a CT scan of my abdomen on Friday. It's just routine for people with VHL and I don't expect any problems. It's part of my getting healthy in preparation for pregnancy plan. I figure if I'm going to share a body with another person, it's best to make sure everything is in as good a condition as I can get it. So, the radiology tech, Jill, her name was, was very nice and helpful. Michael stayed in with me as long as he could because he knows I'm something of a baby when it comes to these sorts of things, but he couldn't stay in the room once the actual test started.
Once he left, Jill said, "How long have you two been married?"
"Ten years," I answered.
"He seems very nice."
"He's wonderful."
"Did you know you had this disease when you got married?"
"Yes," I said, barely suppressing a groan, knowing where this was going. I have had this conversation with countless people.
"Are you blind because of this disease?"
VHL is very rare, so I understand that people, especially those in the medical field, are interested, so I try to be polite and patient and answer their questions. "Yes."
"Were you blind when you met your husband?"
There it was, the question I knew was coming. "Yes," I said, and I think I gave a resigned sigh.
"Oh! What a sweetheart he is!" Jill gushed.
Okay, I know he's a sweetheart. What I find interesting is that he was previously just "very nice," up until Jill found out I was already blind when he married me. Then, all of a sudden he's "a sweetheart." What went unspoken but that I know she was thinking, was: Isn't it nice of him to have married you and you being blind and all! Yes, yes, I was selling pencils on a street corner, and he took pity on me and married me. Sheesh. I mean really, the things people will say. What would she have said if I'd said I lost my sight after we married? Oh, he's such a sweetheart to have stayed with you? Oh, that poor man? I held my tongue though, and just agreed, yes, Michael is certainly a sweetheart, because it's true, he is a wonderful man. But he's a wonderful man because he's patient, compassionate, hard working, funny, and a million other things—not because he married a blind woman. I'm sure Jill thinks Michael has to dress and feed me in the mornings. he doesn't, of course, and the truth is that we take care of each other about equally. In every relationship, home duties and responsibilities get divided up on the basis of likes, dislikes, strengths and weaknesses. Naturally, I don't do any of the driving for our household. Michael doesn't do the laundry-- not unless itty bitty and pink becomes a fashion trend. he balances the checkbook, and I maintain our family calendar of events. It isn't a 50/50 split, the scales tip in either direction from time to time, but I don't think a good marriage is about equality. It's about doing what you do with love and respect, and sight is not required to love and respect someone.
But I didn't tell any of this to Jill because it was none of her business, and-- more importantly-- because she was about to inject me with x-ray dye.

Another Badge of Courage

The surgery is over. My world-class neurosurgeon did it again, which makes it hard to dislike the sonuvabitch. The man will never be accused of being too compassionate toward his patients, but he sure can remove a tumor, and since that's pretty much the foundation of our relationship, I find it annoyingly difficult to hold a grudge. There is little to say about the past two weeks that won't sound like whining. Brain surgery is hard, as taxing emotionally as it is physically. If you can avoid having it, then I strongly suggest that you do so.
I had a lumbar drain, which is a tube inserted into the lower spinal area that drains off a controlled amount of cerebral spinal fluid, which I either produce too much of or am unable to absorb normally. The lumbar drain is supposed to guard against a spinal fluid leak, but it is it's own brand of torture. For four days, I was confined to bed, unable to raise above 30 degrees. As with the brain surgery advice above, if you can avoid having a lumbar drain, I suggest that you do so. It makes recovery a lot longer and a lot slower.
I realize I am bitching and moaning, and even I am tiring of my own surliness, so I do think it's important to look for the positives in a thing. The past two weeks, as bad as they were, did serve to remind me that I have been gifted with the most wonderful husband a woman could ever hope for. He stayed by my side the entire time—sleeping sitting up in chairs, eating nothing but cafeteria food, running for days with only hospital coffee for fuel. He reminds me every day that even though life is hard—sometimes painfully, unbearably hard-- it's worth it. Thanks, Michael—again. I love you.

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.

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.