I can't remember

I did what?!

When I was talking to my mom the other day, she asked, “Can you believe it’s been 20 years since the Berlin Wall came down? Isn’t it amazing to realize you were there when history was being made?” Um, I was?

Yeah, that must be right. I lived in West Germany from 1989-1991. But my memory is sketchy. She said she has pictures of me at Checkpoint Charlie, with one foot in East Germany and one foot in West Germany. I don’t remember that at all. She’s going to send me the pix. Can’t wait to see.

I called my ex-husband, Warren, and asked him about it. He remembers it well, said I had gone to bed early that evening, but he stayed up to watch tv. The wall came down and it was all over the news. I don't remember any of that.

He said we went to see the Grateful Dead in Berlin a year later. I was shocked to hear that! We did?! Are you kidding me?! How awesome! Here’s a video of the concert I apparently attended. I’m sure I must have loved it.

Warren said that on the drive to Berlin that weekend there had been a really thick fog, and we encountered a huge traffic accident that caused us to take back roads all the way to the city. We apparently drove along the former border dividing the country, and found abandoned check points. He said said it was pretty eerie. We had to take some former East German roads which were in really rotten condition compared to the luxurious autobahn in the west. I don’t remember any of that.

However, this conversation did spark a memory of me taking the train by myself to Berlin from where we lived (in Garmisch, just south of Munich). I'm not sure of the date but the wall was still there and people were everywhere, banging away at it with hammers and axes and machetes. I remember renting a chisel for 10 DM to chip off a piece of the wall but it was too hard for my tiny girly hands! That concrete was so dense! After about half an hour I did manage to get a pathetic little piece about 2 inches by 2 inches, but then I asked the guy who was renting the chisel if he could do it for me and he pounded away and got this very substantial hunk of it with black and red spray paint on it. I remember vividly that he hurt his hand in the process and was bleeding. A lot. He didn't even notice it. I said "Look at your hand!" and he shrugged.

Two days ago I was making vegetarian Cajun-lemon “chicken” and quinoa for dinner. When it was time to add the lemon, I was aghast to discover that at some point I’d switched recipe programs in my mind and instead of adding Cajun spices I thought I was making burritos and had added cumin and chipotle! But I don't remember doing it. The dish ended up tasting really strange, but we ate it anyway.

Last week as I was washing up, getting ready for bed part of my hand really hurt. When I looked to see why I found three small red spots. It looked like I’d been bitten by something but I hadn’t been outside at all. I asked Brand what he thought it might be from. At first he thought bug bites too, but then he asked if anything had happened in the studio that day. No, I couldn't think of anything. Meanwhile the three spots were really burning. It took a while, but eventually I remembered that sure enough, one of my molten glass stringers had broken and flew from the flame onto my hand! I’d completely forgotten that it had happened and instead, wondered about the mysterious wounds. (Tip: Lavender oil is great for burns. )

My memory is like a big piece of Swiss cheese full of random holes and thin parts. I encounter them every single day. Sometimes a friend or relative can revive a memory of my past for me, other times not. I can forget what happens to me hours or days later. It's weird. People say, "Oh that happens to me too". No. I can tell you with absolute certainty, unless you've had a craniotomy, tumor, or other brain damage, you only have a tiny inkling of what it's like to live with this.

Stupid tumor.

The Next Phase of Recovery

When I had my MRI done recently in preparation for my six-month follow-up with Dr. Maggio, I asked the radiation facility to send me a copy of the radiologist's report. I've never done this before, I always wait for Dr. M to give us the good news at the appointment, usually a couple weeks later. But for some reason I wanted to know the results right away. Brand was very surprised that I did this, and commented on how much progress I've made psychologically and emotionally, to be able to handle whatever the news would be. Wow, that's right. Check me out.

When the envelope arrived, I tore it open with the excitement of tax return. Blah, medical gibberish, blah, terminology, blah, calcification, ossification, blah... Aha! "No change" from the last review!! While I was excited and very sure there was indeed no tumor growth, I will of course, never trust a radiologist ever again so I took the report with a tiny grain of skepticism. I examined the films and could see with my own eyes that he was right. Still, I looked forward to hearing the words from Dr. M.

Even though I was expecting good news, I knew the visit would be tempered by the fact that this is probably the last time we'll ever see Dr. Maggio. He's moving to New Jersey next month! When his assistant first called me with the news I was so sad. We've been through so much together, and he's the only person on the planet who knows my tumor, exactly where it is, what it looks like. Rational or not, I'll probably never completely trust anyone else to manage my treatment. The first thing I did after I finished with the assistant was to call Brand at work. He was very surprised, but was of course his usual sympathetic and supportive self. "We can easily go to New Jersey for your appointments. It's not that far." BRILLIANT idea! I started feeling so much better.

I'd recently finished reading three books by brain surgeons: "Brain Surgeon" by Dr. Keith Black, "When The Air Hits Your Brain You're Never The Same" by Dr. Frank Vertosick, and "Another Day In The Frontal Lobes" by Dr. Katrina Firlick. All were fascinating reads, and it was from their stories that I got the idea that neurosurgeons move around. So the seed was planted. On some level I was prepared for this eventuality. Still, ouch.

My next move was to commiserate with my on-line meningioma support group, where I was lavished with even more sympathy, as we held a virtual pity party. This is a group who totally understands how a loss like this feels. For some of them it was the first time they'd considered that this might happen to them too. It's a jolt to the system to lose the neurosurgeon who did your craniotomy and knows your tumor and the what inside of your head looks like! One of my meningioma friends shared a comment that reminded me me of my own philosophy: I believe people come into our lives when we need them. Dr. M was one of those people. His amazing surgical skills completely changed my life, but I don't need them anymore. Someone in New Jersey apparently does now. Time to move on. Feeling a little better.

At the appointment on the 31st, Dr. Maggio walked in and said "Everything looks really good". Woo hoo!! The Gamma Knife radiation appears to have successfully zapped the tumor cells for now. I said, "First I'll hug you, then I'll punch your lights out for dumping me!" He plead guilty and we laughed. Then before we could ask where in NJ he was going, he invited us to NJ to see him, and in any case, offered to continue review my MRI's via mail! Okay, feeling really good about everything now.

That settled, we proceeded with the review. He put the scans up on the light box and showed us the tumor with and without contrast.
I'd written down a dozen questions but I still forgot to ask some of them. I'd brought a copy of a recent report on The Association of Breast Cancer and Meningioma but forgot to give it to him. I'll mail it this week. We talked about the ENT assessment of the possible CSF leak. Even though the ENT doc wants me to come back in six months, he and Dr. M discussed the results of the preliminary tests and agreed it's probably not fluid from my skull. More good news.

Since the tumor looks stable, he said it's probably safe to graduate from six-month reviews to annual. I was afraid he'd say that and told him I wasn't sure I was comfortable with that yet. He said six-months was fine then, but we talked about it and I got confused and ended up agreeing to annual. Intellectually I know it makes sense. Emotionally, well, after my tumor was missed in 2003, as far as I'm concerned I can't have an MRI too often; monthly would be fine with me! I'll decide what to do when the hospital sends me the formal notification of Dr. M's departure and replacement, as yet unassigned. For now I'm calling whoever it is Dr. LoserPoseurMaggio-wannabeReplacementGuy.

I'd brought my camera but forgot to take our final picture! Argh. Still, it was a good last visit. I told him about some of the books by neurosurgeons I've read and asked when he's going to write his. Without missing a beat he said, "I'm writing the chapter about you right now". Ha ha! I said, "Oh good. Can we put an evil eye bead on the cover?". "That's exactly what I was thinking." Ha ha, as if! He added that he carries the one I gave him last time every day in his briefcase. I'd just developed a new evil eye bead style I was very pleased with and gave him one of my best as a going away gift.

So that's it.
1. The tumor has stopped growing.
2. I'm moving to annual reviews (or am I?).
3. I'm getting a new neurosurgeon.

The next phase begins. Deep breath.