Women in Comfortable Shoes

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01/20/2004: "It's back. Maybe."

Two years ago last November, I had surgery to remove a pituitary tumor. As most are, it was benign. That is, it wasn't malignant. However, most people don't realize that benign tumors can and do grow back. In fact, there is a 20% chance that pituitary tumors will grow back, especially particularly large tumors such as mine.

I had an impressive 2 cm monster that pressed on my optic nerves, causing my vision to decline rapidly. That's how I discovered it. I went to two doctors. The first said it was allergies. The second said it was just one of those things that happens as we get older.

Finally, I went to my optometrist to see about getting a new prescription to deal with my declining vision. To my good fortune, he was very concerned about the rapid changes, did extensive tests and sent me to a specialist, who ordered an MRI, confirmed the tumor's presence and sent me on to a neurosurgeon, who removed it with impeccable care. I was really lucky because my eyesight returned to normal immediately. For some, it can take weeks, if ever.

The doctor used the trans-sphenoidal method to get to the tumor. Trans-sphenoidal is a Really Big Word that means stick a large tube up your nose or through a slit in the inside of your upper lip, thread it through the sinuses, and chip out the tumor. In my case, they went through a hole in my hard palate, directly behind my upper lip, because my little nose just wasn't big enough to handle the endoscope. Other than looking like the losing side of a heavyweight prize fight for a couple of weeks, there were no outer signs I had had brain surgery. Truly, I was disappointed that I didn't get to shave my head.

As I said, all this happened in November 2001. I was really worried about the upcoming cedar fever season, but shouldn't have been. It turned out to be a pretty good season for two reasons:

1. I was on enough steroids to disqualify me from any horse race I chose to enter, and
2. My poor nose and sinuses were so mangled that nothing went in and nothing came out--air, snot, cat dander, dust, pollen. Nothing. Those cedar spores didn't have a chance.

I had my two-year follow-up MRI a couple of weeks ago. Apparently there has been some growth in the region. The neurosurgeon wants to wait three months to see if it grows more. If it stays the same relative size, then it's a normal capping condition. If it grows, it's back and needs to be dealt with.

I wasn't prepared for the results. In fact, the news stunned me. In hindsight, I should have been better prepared. I guess I was thinking that I sailed through the first year with no growth whatsoever, so this year there shouldn't be much change. I guess I was wrong.

If you're going to have a tumor, a pituitary tumor is the best kind to have, everyone told me. Excuse me? It's not their nose someone poked a microknife into. It's not their upper lip that got sewed back on a bit crookeder than it started out. It's not their back they had to lie on for 12 hours to make sure brain fluid didn't seep out their nose.

Sure, it's not malignant. It's not cancer. But it can grow back. Where it is and how fast it's growing determines whether to have a second surgery or zap it with radiation.

In my case, the doctor thinks the next step, if it is indeed growing, is to give it a good burn with stereotactic radiation, also known as the Gamma Knife--201 beams of gamma radiation converging on a precise location determined in advance by MRIs and CT scans. Why 201 beams? Why not 200? Or 199? What is it about that 201st beam that makes it the perfect number? And how did they figure it out? None of that matters if it works.

There aren't too many side effects to the Gamma Knife treatment. No hair loss, no vomiting your guts out. Just maybe a headache and a bit of bleeding from the large vise they screw into your skull to immobilize your head. Oh yeah, there is a bit of a chance that the pituitary gland itself can die from the radiation.

So, I wait. That's all I can do, because nobody knows what causes pituitary tumors. I can't stop eating or drinking anything to make it better. I can't stop smoking or start exercising to make it better. I can't lose weight to make it better. I can't do or not do anything to make it better. All I can do is wait. And that's pretty scary.

Maybe I should take up smoking or drinking to calm my nerves.