Tuesday, January 31, 2006
Monday, January 30, 2006
She said she wishes she had snapped a picture as they closed before the swelling started because it looks great. Now, their great may be different than my great, after all the extreme cases they’ve seen. That will all pan out in the coming weeks. She said the swelling will take 2-3 weeks (which I knew), and I can have my stitches out next week and it will hurt. My concern is my lip since they didn’t take the stuff out of there, but instead cut off the blood supply to it and injected it full of the sclero fluid. She said that if it gets rid of it all, and it may, it will take a couple of months for my body to absorb everthing. If it doesn’t, it should be an easy surgical removal, and will be done with the laser and such in about 3 months. At any rate, it is going to take a while for the full results to show, so I may as well head back to work when able rather than when pretty. They aren’t going to take this damn drain out until after I get home, so if I get an annoying neighbor on the plane, I plan on flashing them this big tube of blood coming out of my neck. That should shut them up.
Sunday, January 29, 2006
FYI, stealing a wi-fi signal seems to have gotten difficult, so when I’m not answering mail, it is probably because I can’t stay online for more than a couple of minutes at a time. I see my doc in the morning over near glamourous Central Park West (where I believe Mariel Hemingway had a show for about 15 minutes), so I’ll have an update on my progress by then. All I can tell at the moment is that I look like I’ve been given a lead pipe massage, and I have so much swelling and such that I cannot move my right cheek at all. At the very least, I’m hoping they will take out this drainage tube tomorrow and give me the go ahead to take a real shower. I haven’t washed my hair since Tuesday, as if it needed any more of an incentive to commit suicide by jumping off my head!
Our flight is supposed to leave NYC at 8:07am Tuesday. My family seems to think they are going to be able to kidnap me and take me to Grayson to recover. If I’m not happy recovering in the greatest city in the world, what would make someone think I’m going to be happy recovering somewhere I left as soon as I was legally able to do so? I love my family, they’ve been wonderful through this ordeal, and now I want them out of my face for a while!!! I have never appreciated Craig so much as I do now (see, now the damn roids are making me sentimental...I HATE sentimental!).
Saturday, January 28, 2006
Dr. Waner also says that he expects to do some laser surgery on me within the next three months as well as some cosmetic work. I see that several of you have called, but I’ve been out of it off and on, and my throat is sore from intubation, so I’m not talking much. Mainly I’m just glad to be out of the hospital where the nurses woke me up every hour, and my roommate snored like a bear. I’ll probably be posting pics sometime early this week so you can all see how awful I look right now. You know me, I’m all about the exhibitionism.
Friday, January 27, 2006
Wednesday, January 25, 2006
That’s the short update. Here’s the story. This morning, we stumbled across the street to the hospital after having been up until 2:30am, and checked in with the radiology department at 9am, which of course meant that I hung out filling out forms and such for another two hours. The family of the boy we met yesterday dropped by to visit us, and as it turns out, his case is 10 times more severe than mine, he’s just had a lot of work done already by Dr. Waner. Turns out his VM was on both sides of his face and he had a huge one in his neck. His situation was severe enough that his mother eventually had to start homeschooling him. The last surgery he had for his neck was for a VM around the carotid artery, so it is really amazing what this doc can do. His mother made me feel great about what can be done. I have a bit more confidence than I had before.
Want to hear something really strange, but totally true? I don’t know if this was my imagination or what, but when my nurse and one of the docs took me to the room where I was having the treatment, a rather terrifying room that looked just a wee bit like an S&M chamber for Star Trek, as I laid on the bed, I suddenly felt so calm. Something, I don’t know what, came over me, like an energy of some kind that was wonderful. You guys know I’m not exactly into a lot of hocus pocus, but I just felt that you were all with me somehow. And now I’m tearing up…maybe they have me on some good drugs after all. Of course, it could be that Rhoda went around the call center and got the CSRs and sups to remove the pins from the Christopher voodoo dolls they no doubt have stashed in their desks, and that is why I suddenly felt good. That Rhoda, he thinks of everything (and don’t think I don’t know how incredibly hard he’s having to work in my absence…I owe him bigtime).
And yet again, hottie doctor alert! My anesthesiologist for this morning was gorgeous, and the one for tomorrow who just visited me was even better! I can't imagine that people are hotter in L.A. than they are here (granted, I like the cerebral hotties more than the plastic perfect ones, so NYC is my place). Then I got a roomie, an older Latino minister. I’m hoping he won’t try to convert me…his family is sweet, and I love hearing them speak Spanish, reminding me of when I lived out west. I think the last time I heard Spanish was in a “film” Craig bought called “How The West Was Hung!”
They (and by they, I mean ultra-hot anesthesiologist) are picking me up at 7:30am tomorrow to knock me out for the big event. Again, I’m strangely calm at the moment, though I have asked for a sedative for tonight so I can get some sleep (you know how she likes to pretend she’s Karen from “Will & Grace”!). Craig will be one of the first to hear how it went, so he should contact my friends via e-mail. In case I haven’t told those of you who were sent this link, I love you all, and hope to talk to you tomorrow with news that I’ll soon be signing a contract to be the first male contestant on “America’s Next Top Model.”
Tuesday, January 24, 2006
My mom was supposed to come on this trip, but she had some surgery on her foot last week and couldn't. My aunt was kind enough to step in, and granny of course invited herself. I didn't want Craig to have to burn his vacation time.
I thought I would miss Mama taking care of me. After all, in our relationship, I'm the one who takes care of things, not Craig. I was wrong. He is absolutely coming with me next time. This is too difficult for me to do without him.
Before I begin my post, I'm pausing for a moment to note that I am typing and trying to ignore my grandmother and aunt. I came into the bedroom to keep them from looking over my shoulder as I type, and they've now popped in here to talk about NOTHING. When someone picks up his computer and moves to another room, some might take that as a sign that said person wishes to be alone. Taking a hint is not one of the skills for which my family is noted. I am about thirty seconds from putting on shoes and going in search of a cocktail! And now on with my regularly scheduled blog, already in progress.
So, we had several hours to kill before my doctor visit this afternoon, and my aunt wanted some adventure. Granny, on the other hand, may have started to realize that her tagging along was not a good idea. She opted to stay in for the day, which was good considering that it would have taken her until my appointment to get up the block (and before any of you call me mean for that comment, just note that she invited herself along for this ride despite all of us telling her she wasn't up to it, and much as I love her, she is making everything take twice as long as it should...NYC is not a city for those without energy). Now I would have liked to have gone to Gucci to try on suits that are worth more than my car, but this is Aunt Kathy's first visit to the city, so I thought we'd do something touristy that she would enjoy. We zipped over to Rockefeller Plaza, with her snapping pictures the entire way (fine by me...what is so special about the locals thinking you are one of them?). She was thrilled by seeing the skating rink in the center of the plaza (I have to admit, I thought it was pretty cool too). I bought us tickets for the NBC Studio tour, and we had big silly fun.
Fun had, we headed in for my apointment with my docs who will be giving me injection treatments tomorrow. What they will be doing is putting me to sleep, then injecting me with a sodium somethingorother solution, which will cause parts of the VM to harden, thus making it easy on Thursday for Dr. Waner to separate it from the normal tissue. At least that is how my hottie Chinese doc explained it. And can I just say, you can't swing an IV bag without hitting a hottie doc? Roosevelt Hospital houses some docs in the building where I am staying, and I ran into an absolute stunner today in the hall outside the elevator, wearing his pajama pants and a t-shirt that said, "Trust me, I'm a doctor." To my credit, I did not ask him for an exam.
But I digress. I check in tomorrow at 9am, and a boy from North Carolina (his mama clocked our accents in the waiting room) is getting treated before me. He is about 13, has a similar issue to mine, and was so VERY self-conscious, like he just wanted to disappear. I know that body language well. I just wanted to go over to him and say, "Dude, I know." I hope we run into he and his mom again. I would like to know that his treatments are working. If so, he is going to have a very different life than mine. Not that my life was so bad, just sometimes more difficult that perhaps it needed to be, and I hope he can have something a bit more normal. Heck, I hope I can have that too!
My aunt is going to bring the 'puter over to the hospital when they wake me up after the treatment. I'll post the gory details then. Please start the good vibes at around 9:30ish in the a.m.!
And now, a random thought from the flight up: Who on earth buys the porn you see on the newstands at the airport?! They always have at least Playboy and Penthouse, yet you never see someone on a plane with the centerfold stretched across the aisle. Perhaps that is one of those things you only see in first class. I certainly would know nothing about that.
And also: I can see the CNN building from the window of our hospital-subsidized apartment here (a fabulous Upper West Side apartment, I might add...one might even call it a de-luxe apartment in the sky). Assuming everything works as planned, by my second or third trip up here I might just be pretty enough to go over there and stalk Anderson Cooper. Craig baby, it has been a nice ride, but I am going to have to leave you for my favorite newshunk. ;-)
Monday, January 23, 2006
Oh, and American Airlines just called to tell me the flight has been delayed, so now we aren't leaving The Ville until 4:46pm. ARRRRGH! I need a sign this is all going to be okay. Where the hell is Cher when you need her?
Sunday, January 22, 2006
Okay, I am not going to write this entire post in the third person, I promise! My name is Christopher, and I was born with a type of vascular birthmark known as a venous malformation http://www.birthmark.org/venous_malformations.php. This blog is intended to be the story of getting rid of it, assuming that happens this week. You see, after 32 years of living with looking like I have had really bad dental surgery while I'm chewing tobacco, I'm leaving tomorrow morning for New York City to get treated on Wednesday by the world's foremost expert on my condition. After my first surgery at 18 months and 9 more with that doctor through my early teens, then getting my hopes up with a doctor at the University of Kentucky at 23 only to have them shot down, I actually have a chance now of looking normal. I am scared out of my mind right now, and I can't for the life of me figure out if I'm more afraid of the pain I'm about to endure or if my real fear is the possibility that the surgery won't work. Because if this one doesn't work, it is pretty much finished. This doctor, Dr. Milton Waner (see his amazing work at http://newyorkmetro.com/nymetro/health/bestdoctors/features/9267/index.html), is the best there is. You may have seen him on The Learning Channel treating some pretty severe vascular deformities on kids. He invented the technique for treating them, and very few doctors will touch the sorts of problems he routinely takes on and fixes. If he can't help me, no one can.
I had my first visit with Dr. Waner in May. My partner and primary care doc were the only two people who knew I was going. I flew to New York alone, and made my way to his offices on the Upper West Side, chain smoking at every opportunity just to have something to do other than think about getting told the expert on vascular birthmarks could not help me. As the receptionist made photo copies of my insurance information, I looked at photos on the wall of a fund-raiser. One in particular that caught my eye was of a little girl being held by....CHER! Well, my confidence meter just spiked up. If being greeted at this office by Cher isn't a good sign, I don't know what is! After getting checked in, I excused myself to the restroom to remove my makeup prior to my exam. I haven't been seen in public without makeup since age 16 or so. The birthmark is under my left eye, causing it to look like I've been punched. I also have some blue marks showing through in a couple of places, so every day since I can remember I use yellow concealer and then a flesh toned concealer over these areas. I hate wearing the stuff, but I just can't bring myself to leave the house without it. In fact, Craig and I were together for two years probably before he saw me without it.
The waiting room was jam-packed, and I had to sit in the floor in a corner for the first 30 minutes I was there before a seat opened up. Most everyone there was a parent there for their child. My mom popped into my head, remembering hours of driving for two hours to Lexington and waiting in lobbies for a chance to see one of the best plastic surgeons in the south, even though he was never able to truly help me because of the limitations at the time. Seeing these parents made me love her just a little more. I got to hear some of the tales of these parents during my nearly 3 hour wait, my favorite being from the total Jersey girl with the voice of The Nanny. Her daughter had a hemangioma that was removed from the top of her head by Dr. Waner, and he had told her that he stitched the incisions he made so that she would never scar in case she decided to shave her head as a teenager! The little gal was quite the charmer, and it struck me that she would never have to go through the stares and the rude questions I've had to endure my entire life. Someone once called child protective services on my mom because after being asked "what is wrong with him" one too many times, she told a rude woman that she slapped me around when I got sassy. And I wonder where I get my sick sense of humor!
So, I finally get in for my appointment, and get questioned by Esma, Dr. Waner's nurse. She and I ended up chatting about home remodeling (something I have recently learned is a universal language...everyone has a horror story they love to share) until the doctor came in. He was very softspoken and friendly, the sort of person who puts you at ease instantly. My MRIs got popped up on a light board and he looked them over as he asked me questions about my history. No doctor has ever fully explained my condition to me, so he took care to point out everything to do with my VM on the MRIs. Evidently, there is a pocket of fat in the face called the buccal fat. My VM (which is basically a mass of broken blood vessels feeding into pockets) is on both sides of the buccal fat, and to further complicate things, goes all around the facial nerves. The two reasons no doctor would ever fully attack my problem was the fear of paralysis coupled with the difficulty of massive amounts of bleeding involved. I had read about Dr. Waner's techniques on dealing with the bleeding, but didn't know how he handles the nerve problem. The best I had allowed myself to hope for was that he could take the size of things down somewhat.
Dr. Waner said to me very matter-of-factly, so casually I almost missed it, that the surgery for me was extremely complex and difficult to perform, but that he had done it before without problems. Excuse me? Back up, you mean you're actually going to treat me? I had heard correctly. He said there was no reason to think they couldn't get all of it. I was so shocked that I would have cried had it all registered with me completely.
I spent the rest of the afternoon wandering around the neighborhood trying to let myself believe I might have a chance at not being stared at wherever I go. I believed it once before and got very hurt, so I still can't let myself believe it entirely, even though my chances are excellent. That is why if you are reading this, you don't know me personally or if you do, the surgery has happened and was successful. Almost none of my friends know I am having this done. The last time I had surgery, for the next two years people asked me about it, which was like forcing me to relive my disappointment all over again. I won't go through that again. My family knows after I got a guilt complex and told them (and I yelled at my grandmother tonight for telling her church about it...I am so going to Hell for yelling at my granny!). My best friend Wendy knows because her son has a birthmark on his eye, and we have swapped stories, mainly so I could comfort her and try to help her feel okay with his situation. Once the surgery is successful, if it is successful, I'll send this blog out to my friends to share it with them.
So, tomorrow at 2:30 I fly to NYC with my aunt and my grandmother who has insisted on coming along. I am afraid I'm going to be spending more time worrying about them and getting them from one place to another in the big city than I am about myself, which really isn't such a bad thing. I have an appointment on Tuesday with Dr. Berenstein, an associate of Dr. Waner. On Wednesday, I check into the hospital for injection treatments meant to harden the mass in my face. They're working on the part on the outside of the buccal fat this time (which means more than one surgery if this is successful). Thankfully, they will put me to sleep first because I've had injections of another form in my face before and it is horrible. I'll spend the night in the hospital, and have surgery with Dr. Waner the next day. As best I can tell, he's going to cut me from the top of my ear to somewhere onto my neck and just dig right in. Yeah, it is going to be about as nasty as it sounds. Here's hoping for good meds and a sexy blind male nurse!