The identity of Lloyd

Thursday, September 11, 2008
Subject: Lloyd's identity

Today we met with Dr. Lim and learned what Lloyd is. First, we learned that he was removed at a terrific rate. After reviewing the post-operative MRI with the radiologist, Dr. Lim estimates the removal at around 95%. This is really great news. Also, getting a diagnosis is quite a relief—there was a chance that this would remain a mystery.

The diagnosis is, naturally, complicated in what it means. Lloyd is a Level 2 Fibrillary Astrocytoma. This is kind of good and kind of not. The fact that it is a level 2 makes all the difference—this particular tumor is extremely bad if it is a level 3 or 4 (the levels are 1-4, with 2 being the lowest possible if it is actually inside the brain, which mine was). It is not benign. How malignant it is isn’t clear yet.

Our next step is to meet with a brain tumor specialist at Hopkins, who will now take over treatment of the tumor that remains. Options mentioned so far include chemo, radiation, and simply “keeping an eye on it.” We will know more after meeting with the new doctor, hopefully next week.

I had the staples removed today, which means that my scar is sadly less cool-looking, but much more comfortable. I return to Dr. Lim for follow-up in six weeks—apparently it takes quite a while to heal. I asked him some questions I had about the surgery & learned that a rectangular piece of skull was cut out—roughly where my scar outlined—and was attached back with titanium plates after the brain surgery. The brain was opened about the size of a quarter, Lloyd was extracted, and the brain collapsed back onto itself the way it was pre-tumor. Dr. Lim also told me about the decision during surgery to either drill into the bone of my ear or risk getting closer to the speech region of my brain- he chose to cut into my ear. I am almost entirely deaf in my left ear, though it does “pop” sometimes. He tells me that this will get better, but that it will likely take several months.

I remain on anti-seizure and pain medications, both of which make me feel odd, but you’d think I’d be accepting it as the status quo pretty soon. I am finding that I need less pain medication as time goes by, though it is a very slow downgrade. I get tired very easily, still, but am feeling more like myself every day. For those who might be wondering if Mark and I are ready to kill each other—no, we have always weirdly enjoyed being together A LOT, so we are happy as clams. Most people gag a little when they hear this, but it’s true. What can I say—we like each other. Also, I have a brain tumor and therefore get anything I want. That helps.

We miss everyone and love hearing from you. We will keep you posted on what we learn from the new doctor & what the next steps will be. Thanks for keeping me in your prayers.

Love, -Kristina (& Mark)