Brain surgery, ahoy!

Sent: Friday, August 22, 2008
Subject: Brain Surgery, here we come

Here is the big rude e-mail to everyone at once giving you the scoop on my doctor's appointment yesterday & how my brain is going to be scooped on Tuesday. Please forgive the lack of personalized e-mails—we're a little overwhelmed, and you all know us well enough to forgive us. And we do want to keep you “in the loop."

Yesterday, we met with Dr. Lim to discuss the results of the functional MRI and our options for proceeding. The good news is that the lesion is not as close to my speech regions as previously feared. The MRI photos were fascinating. The main ones we focused on were composites of the areas of brain activity engaged by the various tests I did during the functional MRI- little blobs of color showing up in the part of the brain engaged by each test (yellow blobs for the rhyming test, purple blobs for the thinking-up how many words start with "c", etc) So—looking at this composite of the colored blobs and the lesion, the good news is that there is an open path from my ear to the lesion, and no colored blobs in or that closely around the lesion. All of which is to say that the risk of surgery is far lower than it was feared.

Now that we have a clear pathway, it is time to go in and get Lloyd out. Until we nab some of him, we just don't know what he is. Dr. Lim will use a variety of computer accompaniments (he mentioned "brain GPS" and microscopes) while performing the surgery to safely take out as much of what he finds as is possible. He noted that he errs on the side of caution- as he can always go back in and take out more, and he wants to keep my stroke risk as low as possible (he estimates it at 1%). He also mentioned that the brain is the consistency of "butter", and that this lesion will likely be the consistency either of "jelly or margarine." Jelly would be easy to get a large percentage out; margarine would be significantly more difficult. Come on, jelly!

As the surgery progresses, he will be sending pieces of the removed items for pathology. This is probably not going to tell us what Lloyd is yet, but they will try. He told us that the pathology of this lesion will likely take two weeks, that he is using the man he considers the best pathologist in the world ("he writes the books that teach the other pathologists"), and that this man will likely want to run a huge variety of pathologic tests to determine what Lloyd is.

In other news, he mentioned that my lesion is "well-behaving" (not growing aggressively), and that I am young. He will be opening up my skull above my left ear. Just out of curiosity, and because I am, after all, a girl, I inquired as to whether I'd get to keep my hair. Essentially, they will shave the side of my head where they are cutting in. Which means the longer hair coming down from my crown/top of my head will sort of hang over the shaved area. Probably. This is obviously not a priority for anyone—I repeatedly felt the need to tell him I was simply curious and it didn't really matter—and he said that if he gets worried about hair falling in, he will shave as much as he needs. So, curiosity satisfied.

I will have my skull fastened back together with pins, my skin with staples. I'll be operated on on Tuesday and plan on being in the hospital through the weekend. Risks are the usual surgery risks (anesthesia is always a slight risk), infection, stroke, and possible brain damage, particularly speech elements and possibly memory. He mentioned that my speech may be affected for the first few days after surgery, and may self-resolve quickly. But, he seemed very confident and sort of matter-of-fact about the whole thing, and he qualified and gave percentages for his belief about the risks. We just really, really like him and feel confident with him.

In summary, we walked out of the office feeling great—celebratory, really. We are finally making progress, have a plan of action, and we're getting going SO SOON. Of course, we do not know what Lloyd is, but we WILL, and that is terrific news. And the risks of getting in there to get at him are significantly lower that we all feared, so that is great news. Just to be doing something is wonderful—it has been a long, long month. More for Mark, since I remember very little of the first weeks :)

We are in great moods, looking forward to getting going. Monday will be spent at the hospital doing all of the pre-surgery stuff—lab work, physicals, more MRIs, etc, etc. Tuesday I'll be admitted for the surgery, and I'm hoping to just be sedated for the rest of the week. I've had a horrible drug rash from my initial anti-seizure medication for the last week (that has NOT started getting better yet- I mean, seriously-- the brain tumor wasn't enough? I have to have a drug rash now on top of all of my other side effects? All of my brain drugs have these extra inserts in the pharmacy bags saying "please remember that your doctor has determined that the benefits of this drug outweigh the potential side effects"!), and the prospect of simply being comatose for a week sounds awesome right now.

Thanks for your thoughts, prayers, cards, treats, and general concern. It really does help to know that people are pulling for you, and we appreciate your love and concern. We will certainly let you know how it goes, and feel free to e-mail anytime, especially if you've got any questions. I mean, it IS interesting, and I don't mind at all. I think it is fascinating, and besides, I have one of the top ten brains in the world.

Love, -Kristina (& Mark)