Back on the Roller-Coaster

When Lisa was first diagnosed with breast cancer - was it two years ago? three years ago? - the first thing the mental health nurse said was, "this is going to be an emotional roller-coaster, so you need to prepare yourselves."

Well, there really isn't any way to prepare - it's more a case of bracing yourself, kind of like a roller-coaster, when you come to think about it - but we muddled through somehow. Lisa had chemo, then the bilateral mastectomy (just in case the healthy one decided to go bad), then radiation. The chemo worked: pathology showed complete pathological resolution. We felt - not safe, but pretty good.

Then she started having trouble with her vision, eventually traced to what was believed to be a sanctuary site metastasis nuzzling up against the brain stem and pressing on a vision center there. She was deemed a perfect candidate for stereotactic radiosurgery, so we trekked up to Dartmouth-Hitchcock, and did the procedure. It's very sfnal: the first day, they do mapping MRIs and other tests, the second day the computers plan the surgery while the patient goes and does tourist things, and the third day the machines zap the tumor - the last of which takes about 40 minutes, half of which is a dry run to make sure the machines are moving freely. Again, the radiosurgery worked - for a while.

This December, the tumor grew again. It was re-treated with radiation, delivered this time in multiple fractions, and again it seemed to shrink. However, at the beginning of June, the MRI showed that the tumor had grown again. This time, it had moved slightly, so that it was surgically accessible. Yep, it was time for brain surgery.

(Oh, yes, and in the middle of all this, the sight in her left eye started to fade. First the color vision went, then vision in general, sight darkening from the bottom up, like water filling up a pool. We consulted opthamologists, but didn't get a solid answer, not even whether it was connected to the cancer or not.)

So, June 27, we went back to Dartmouth-Hitchcock for the surgery. My mother came along, as well as Lisa's sisters, and we all sat in the waiting room for eight and a half hours - 6 1/2 of that Lisa was actually under anesthetic - until at last the surgeon (head of neurosurgery - we can't complain about the level of care!) came out to give us a good news/bad news set of results.

It turns out that the tumor by the brain stem wasn't cancer at all. It was a benign meningioma, and had probably been there most of her life. Most of it was successfully removed, scraped off nerves that control swallowing and hearing, and the remainder could be left alone, as it probably wouldn't grow large enough to be a problem for another 40 years. However, on that morning's MRI, they found a second, tiny tumor - luckily on the same surgical pathway. It was a breast cancer metastasis, but they'd removed it completely. Things were looking good again, even if Lisa's recovery was slowed by recurring nausea caused by messing around in the part of the cerebellum that controls the gag reflex. (Yes, that's probably as nasty as you imagine.)

And then... The last test came back, showing cancer cells in the cerebrospinal fluid. Nothing anywhere else, just in that one - kinda crucial! - area. And that means intrathecal chemotherapy, chemo (methotrexate, in this case) dripped directly into the brain's ventricular spaces, the part that I've also seen called the arachnid space. This meant, in turn, a second brain surgery in less than a month, this one to install a port to allow the chemo to be injected without requiring a spinal tap. (The first bit of good news in the whole mess was that they could also take samples of the fluid using the same port - no spinal taps required at any point!)

So, back to Dartmouth-Hitchcock, and, what with one thing and another, we had what is probably the worst week in the entire cancer saga. Lisa was still throwing up, got dehydrated, felt awful - two hours from home, in a hotel 15 minutes from the hospital - and still had to have the surgery. Once it was in, and she'd had a few liters of IV fluids, she started to feel better, and we managed a couple of good days before she started chemo.

It is true that intrathecal chemo isn't as bad as general, whole-body chemo. However, it's still not a lot of fun. (Plus the folks at Dartmouth didn't bother to inform her primary oncologist of where they'd actually put the port: not a moment to inspire confidence in any of us! She had to make a quick detour to radiology to be sure of where it was.) The process involves lying very still in a quiet, sterile room while the chemo is very slowly injected into her brain. Then she lies quietly for a little longer, presumably to give the drug a chance to migrate evenly along the spine, and then she goes home. Then she waits to see if she needs anti-nausea meds (yep) and/or something for a headache (yep again). Plus she's still throwing up now and then from the original surgery, which isn't exactly healed yet.

And she'll do this once a week until either the cancer cells disappear or the drug stops working.

(Oh, and the vision thing? That probably is the cancer. It seems that, if you look very, very closely at the last MRI, you can see something on the appropriate optic nerve. It's so small the radiographer didn't call it, but the neurosurgeon thinks he sees it. The chemo should kill it, if it is a lesion, but there's no knowing whether the sight will return.)

So we're back to where we were in the beginning, wondering if the chemo will work, waiting to get the next test results to find out if it's working, waiting for what we hope will be the right answers.