If I Only had a Brain

The diorama I made for Mike

One of my best friends, Mike, a guy who I have know forever, who has been a wonderful source of support, love, and humor throughout this whole AVM ordeal, has the best heart of anyone I know. He is the kind of person who will give you the shirt off his back. Hell, he'll even give the shirt off his back to the guy who stole his only other shirt. If I had to choose someone for my team in a rumble, or to hold on to my life savings, it would be him. A few weeks ago, Mike, a healthy guy in his early 30s, woke up in agony, aware only that something catastrophic was happening. His roommate called 911, and they got him to the hospital in record time. Like me, Mike was unaware that he had been born with a teeny physical defect hidden deep below the surface. That night, his heart basically exploded. This is something that people rarely survive, but one pacemaker and a few valves later he is miraculously still in this world. I have always thought to myself that my brain was a little better that those belonging to other people, and I still think that Mike's heart is unrivaled. We make quite a pair, the two of us. Next Halloween, we are going as the Scarecrow and the Tin Man. Why do these random defects strike with such irony? Thank you god for letting us keep Mike. Thank you Mike, for everything.

"Patient has a small AVM in the brain" Part IV

I demand an addenda to the radiologist's report, and call him for several days until he finally breaks and returns my call at 8pm. It's a war of attrition, and frankly, I have come too far to just surrender now. For his part, he is apologetic and very nice on the phone, though I still think the first report was unforgivably inadequate and unprofessional. It would seem like precision of language would be key in this situation, and that the specialized skills of the radiologist, and the mandate that he and he alone interpret the images, would result in a less laissez-faire assessment. I ask him to bring up the films on his computer while I have him on the phone, and he tells me that the nidus of AVM has shrunken to 9mm by 4mm. This is a reduction of about 50%. My anger towards the radiologist is replaced by gratitude, and relief begins to settle in. About thirty seconds after I hang up I realize that this means that I still have an AVM. That nothing reduces risk except obliteration. That risk is cumulative. That I am getting closer to that 'average age of first bleed' statistic. That I have begun another year exactly were I started the last. When I told my husband that the AVM had shrunk, I actually broke down and started sobbing in the middle of our kitchen. It was hard to explain how I could feel both so happy and so devastated at the same time. More than anything, there was just this overwhelming wave of exhaustion. Tears of joy never tasted saltier.

"Patient has a small AVM in the brain" Part III

I finally get the radiologist on the phone again after a second holiday weekend, he wants copies of my MRIs from last year. I assumed this was for comparison purposes, so that his report could include what he observed about changes (if any) to my AVM. I bring all my old films up to the hospital, and wait around at the records window for an hour reading some tattered waiting room copy of Family Circle (it's like "Highlights" for adults,) waiting for them to copy my CDs. I ask them to page the radiologist, I am told that he is just a few doors down. He is told that I am waiting for him. 45 minutes later, I am told that the doctor said I did not have to wait, because he was not going to emerge. Considering he probably decided that he was not going to talk to me as soon as he heard I was waiting, taking 45 minutes to intimate this information to me seemed excessive. Several more days pass. My regular doctor (who is a doll) calls me, and tells me that he has the report, and it says......wait for it....."patient has a small AVM in the brain." I was so pissed off I could have eaten nails. This is what I was waiting for? This is what I have just paid god-knows-how-much for a specialist to tell me? Could anything be less precise, or more subjective? It took me less that five minutes to look through the films, with no medical training, to determine that "Patient" indeed had an AVM in the brain. Two weeks later, the only new information that I have is that said AVM is "small." Well, great! Thanks for your expertise, but the only "small" AVM is the one that is inside someone elses' brain. All other AVM's are a pretty big deal.

"Patient has a small AVM in the brain" Part II

So, I rush home, the roads are covered in snow, it's almost midnight, and the pre-MRI xanax had long worn off. The first thing I did when I got home was load the CD in my computer, I don't think I even shut the front door. I click through 43 images and then, there it is. The AVM who I have only seen in pictures, but could recognize instantly. I open a beer. I feel like I am trying to interpret a home pregnancy test: 'is it a little shadowier? Are my eyes playing tricks on me? Should I get another MRI, just to be sure? Did this thing even work?' The next day, I call the hospital and my doctor to ask if the radiologist has made a report yet. I do the same thing the next day. And the next. Then there was the long 'holiday' weekend. (Cue festive music and joyous...um, despair.) On Tuesday, I get the radiologist on the phone. He wants to do another MRI. (Repeat from beginning).

"Patient has a small AVM in the brain" Part I

Ok, now that I have shared my happy news about the incredible shrinking AVM, I feel I have to share my frustrations with how I actually found out about said shrinkage. My surgeon recommended a follow-up MRI one year after gamma knife surgery. Let me just say, it was one very long year. I wanted to schedule the MRI a few weeks early, when I was on break from school. That way, if the news was not good, I would have a whole week to be splayed out on the couch in an incoherent, alcohol-soaked sobfest. It's just good planning. I found that it was poor planning to be diagnosed with an AVM and be told I needed brain surgery during law school finals, so I guess it just comes from experience. Anyhoo, I went for the MRI, and the tech refused to tell me if I still had an AVM (they know but won't tell!) He insisted that the radiologist had to read it and do the report himself. From experience, I knew that this meant that the AVM was still there. Techs are all too happy to take the wind out of the radiologist's sails when it's good news, but I have never met a tech who wanted to pull the rug out from under a radiologist when the news is bad. The only time an MRI tech actually says, "we're not allowed to read the MRI," is when something is not right, so I guess it is pretty much the same as if he read it. I am not a radiologist, but I did stay at a Holiday Inn Express last night, so on my way out of the hospital, I ordered up a piping hot copy of the films on CD, and went straight home, only stopping for a 12 pack of Heineken. In case of emergency, remove cap.

Major Shrinkage!

"Shrinkage" is a word most people...well, shrink away from. Without belaboring the point our friend George is making above, there are other examples of shrinkage that are equally unsettling: the "shrinkage" of my jeans (read, expansion of my ass) ; my 401K; personal space, ad infinitum. But in the same way that not all growth is good (see, e.g. : student loan debt; ass issue, supra; impatience, etc. ), not all shrinkage is bad. I am happy to say that I recently had the pleasure of finding out that over the past year since I had Gamma Knife surgery on my AVM it has shrunk from almost 3cm to 9mm x 4mm! Wooohooo! I have not had any real negative effects from the surgery at all. Though it has not been a walk in the park, relative to others I know, I have been extremely lucky. I will fill in the (irritating) details about how I finally found out about my epic shrinakage in a future post. Right now I don't want to do anything to 'minimize' the sweetness of the moment.