One wonders if I am psychic...
...or maybe only partly so. It didn't weigh 6 pounds. But it was a tumor. Is a tumor. How long ago did I write about that MRI? It was in August, so what's that? 5 1/2 months. Well. Time flies, and one doesn't write in her Live Journal.

I'm not holding up as well as I appear to be on the surface.

A summary of the events of the last few months might be in order. This might be more like a novella. We shall see, shan't we? (Who the hell uses a word like shan't anymore?)

I had an appointment for a follow-up regarding that MRI two Tuesdays after the MRI appointment. My doctor and I fully expected to cancel that appointment. No one thought the MRI would actually find something. But one Tuesday after, when I got to work, there was a message from her office saying she wanted to see me that day. So I called them back. And I reminded them that I already had a follow-up scheduled the next week. And they told me they knew, but she wanted to see me today. Oh. Today. Okay. I made the appointment for that afternoon. I took the latest one they had because I didn't want to leave work any earlier than I had to. I'd already come in late the Friday before because of the MRI. And I think I had left early another day for the original appointment.

I was busy that morning at work. And Rob had e-mailed me all kinds of supportive words of reassurance. I didn't think about it until I was in the car driving back to Delaware. For an hour. I'm quite surprised I didn't give myself a heart attack. I was scared, because I had no idea what she would tell me the MRI said. I knew she couldn't possibly tell me it was a tumor... that's utterly ridiculous. But what else could be so urgent that she had to see me today? When they took my blood pressure at the doctor's office, it was sky high. Go figure. When Wyndham came in, she didn't greet me with our usual chatter. Before she could say anything, I half-jokingly said, "It's a six pound tumor, isn't it?" The color draining from her face made me start to cry. I cried a lot that day. She called Rob for me, and he came to be with me. She called my mom for me; I could hardly speak to tell her the number. She stayed in there with me for two and a half hours. I made her go see her other patients. She's maybe saved my life.

The MRI showed that I have a 2.5 cm retroclival meningioma that's putting pressure on my brain stem at the pons. "Meningioma" is not the bad word in this sentence. "Retroclival" and "pressure on... brain stem" are. Meningiomas are actually quite benign, and many people live their whole lives with them and never even know it. 20% of all primary brain tumors are meningiomas. And honestly, brain tumor is a misnomer. Meningiomas are actually tumors of the meninges, or covering of the brain. They aren't aggressive. They don't harm the normal tissue they come into contact with. They cause problems by proximity and compression of normal tissue. Symptoms are extremely varied, because they depend on where in the brain the pressure is. My tumor is relatively small - hardly an inch - and kind of cone-shaped. I've seen pictures on the web of people with 8 inch meningiomas in their skull. Doctors are surprised that those people can actually walk into their office. But their tumors aren't near structures that are as sensitive as the pons. Not only is the pons responsible for many things, but there are several pairs of cranial nerves that originate there, and these are really what are delicate. Those nerves are responsible for things such as your sense of smell, controlling eye movement, and facial muscle movement. And that's the dilemma. Often, meningiomas are not operated on, because they really are slow growing, and if it ain't broke, they don't want to mess with it to try to fix it. The tumor may not ever grow enough to cause a problem, especially if it is located more towards the front of the head, where there is more tolerance for brain tissue compression. In my case, though, the tumor is actually already putting pressure on the brain stem. I don't have any symptoms, according to several of the finest neurosurgeons and neurologists in the country, and they are surprised about it. The tumor must have been there for a long time, growing very slowly, for my neural pathways to have accommodated it. And waiting might be a good option. Maybe it won't grow anymore. Maybe I'll never have any deficits because of it. Its discovery, after all, was incidental. No one seems to think that any of my headaches are caused by the tumor. If it ain't broke...

But let's look at the other side of the coin: I'm young. This thing has a long time in which to grow or not grow, and chances are it will grow at some point. Will surgical and radiation techniques really be that much better in five or ten or twenty years? Will the trade-off in my age and general health be worth the wait? If it grows even a tiny bit, will that cause irreparable deficits? Is the risk of losing my sense of smell or acquiring double vision now worth eliminating the chance of some worser deficit somewhere down the road? No one knows the answers to these questions. Or the biggest question of all: Is there a surgeon skilled enough to do this surgery?

I've met with over a dozen of the top neurosurgeons, neurologists, ENTs, and radiation oncologists in the world. Half of them flat-out refused to have anything to do with my case because of the complicated nature of the surgery. It's very risky. I could end up a lot worse off than I am now. I could end up a vegetable. I could end up dead. A number of them have disagreed with the diagnosis of meningioma. I've been told it could be a meningioma, a chordoma, a chondroma, a chondrosarcoma, a dermoid, or an epidermoid cyst. They are all generally slow-growing tumors, though some are more aggressive than others. They each originate from a different kind of tissue or layer of cells. None of them come from actual brain tissue. Some come from the lining of the brain, some from the various layers of bone, and some of them are congenital defects, stemming from before I was even born. A CT scan of my brain did little to shed more light on the subject. The third neurosurgeon I saw summed it up nicely when he said, "I'm absolutely certain now that it is a chordoma! 51% chordoma, 49% meningioma."

Let me explain a little more about the location of my tumor, and what structures it, or the removal of it, could possibly impact. There is a bone that is part of the inside base of your skull called the clivus. If you think about the skull bone that rests above the roof of your mouth, you've got the right one. On either side of this bone are your two nasal sinus cavities, and above it are your eye sockets, where your optic nerves and such are located. This bone forms part of the channel where your brain stem lies, specifically the pons. Emanating from the pons, of course, are those cranial nerves I mentioned earlier. My tumor is growing from the inner surface of the clivus bone back towards my brain stem. The tumor is also growing in between my two basilar arteries, the blood vessels responsible for feeding blood to my brain. Slightly above the tumor, you will find my pituitary gland. That's no minor structure either, being responsible for many metabolic and hormonal functions. The tumor is quite literally in the center of my skull in all directions. Talk about being stuck between a rock and a hard place.

For a while, my best hope was the team at Johns Hopkins University Hospital. They have some of the top surgeons there, and their original opinion was to watch and wait, and see what the tumor was doing, at least for six months. But then they asked me to meet with their radiation team. Meningiomas can be treated with radiation, and sometimes, if they are small enough, they don't need to even do surgery first. Although that option opens a whole new can of worms, I was willing to explore every path available to me. The radiation specialists there really put my mind at ease with their statistics. They had me convinced that radiation was the right option for me. I was ready to sign up. And then they asked me to see an ENT there. They wanted to see if the ENT could do a biopsy of the tumor with minimal risk to me. It turns out that you can't do the radiation unless you are certain what type of tumor it is. Chordomas and Meningiomas respond differently to different types of radiation, and if you give it the wrong one, it can grow instead of shrink. That's a quandary if ever I saw one. Sadly, the ENT doesn't think a minimal risk biopsy is possible. The chances of a spinal fluid leak or some other such problem are too high. That appointment was just before Thanksgiving. They still haven't come up with a new plan of action.

So now let me tell you a little bit about chordomas. That's the second most popular choice for what my tumor might be. Chordomas are much more rare than meningiomas. Only one in two million people have chordomas. Chordomas can occur anywhere along the spinal column; they come from undifferentiated spinal cord tissue. Only one in five million people has a chordoma located where mine is, at the top of the spine. Chordomas are slightly more aggressive than meningiomas, and can invade neighboring tissue. They also have a tendency to destroy the bone that they are growing from, though evidence of that in my case is minimal. Chordomas have a higher rate of recurrence than meningiomas do. Chordomas are treated with a type of radiation called proton bean. There are only two proton beam facilities in the United States. One is located in Boston at Massachusetts General Hospital, the hospital for Harvard's Medical School. The other is located in Loma Linda, CA.

We sent a set of my films to the doctors at Mass. General. Just before Christmas, they called and said that they think my tumor is definitely a chordoma. There is no doubt in their minds. They think I should have surgery in the first half of 2004. The radiation oncologist there, who is probably the world expert on chordomas, wants to manage my case for me. The top three neurosurgeons in the country for the kind of surgery I will need are in New York City at St. Luke's-Roosevelt Hospital, in Arkansas, and in Washington, DC. Co-incidentally, I have already seen the one in Washington, and he was the first person to suggest that my tumor was something other than a meningioma. I've sent copies of my films to each of these surgeons, and all of them agree that the tumor is a chordoma. This is more agreement than I have had on anything so far, but it's making it all that much more scary and real for me. The time is approaching for me to do something. I have an appointment with the one from New York on Tuesday.

I'm very fortunate, really. I have a very solid and strong support network of friends and family who love me and are ready to drop anything to help me if I need it. I am thankful for my mother who has kept the vast amounts of information we have received organized and easily accessible. I am thankful for my father's sense of humor, which prompted him to ask the first neurosurgeon we saw if the there was any possibility that the MRI films that had my name, birthday, and social security number on every frame might actually belong to someone else. I am thankful for my brother, who found me a Joanne Bear on eBay and got her for me at some expense. (When my brother was very young, he got a bad case of strep throat and one of our neighbors bought him a stuffed bear from the local grocery store. That bear is called Joe Bear to this day, and he's a very special bear. Josh found a mint condition bear from the same year just like him on eBay and got it for me. That's Joanne Bear and I get teary-eyed every time I think about it.) I am thankful for Rob, who is sticking with me unconditionally through this very tough time. I am thankful for Rob's family, who is full of doctors and kind, caring people who hardly even know me and still want to help me in any way they can. I am thankful for my job at SunGard, which has provided me with excellent benefits and health insurance that has allowed me to see as many specialists as I need to so that I know I am making the right decisions. I am thankful for my managers there, who have been more understanding than I could ever have hoped for, who don't make me use up sick days to go see all the doctors I have seen, and who continue to treat me as a valuable and important part of the team. I am thankful for my doctor, Wyndham, who thought to send me for the MRI in the first place. I am thankful that we found this tumor early, before it was an emergency that had to be dealt with. I am thankful for my two cats, Abby and Poppy, whom I still believe will cure my tumor by using KVT (Kitty Vibration Therapy).

I want to put all of this behind me. I want to get on with my life. I am tired of things being put on hold because of this stupid thing that I have no control over. I don't have any more time or energy to waste on this. I want it settled by the end of 2004. Talk about a New Year's Resolution.