So sayeth Tara, the pain guru. On that note, I wash down a Motrin 600 with some thick green juice and reread some of my friend Naomi’s posts about leptomeningeal carcinomatosis and arachnoiditis. That’s right, the burning sensation across my upper abdomen may be due to nerve disturbances originating from my spine and/or my brain. LC (or lepto…etc) occurs in 5 – 25% of lung and breast cancers, and it can happen quite suddenly. When I mentioned it to my oncologist this morning (he’s been checking in every day by phone), he said he’d thought of it, and had already taken a second look at January’s brain MRI. And perhaps he was thinking arachnoiditis and just not saying the word. So a spine MRI is in horizon, or even “the always charming lumbar puncture” (as Naomi put it), known in vernacular as a spinal tap. Fabulous.
Every other month I put on a dark look and talk about dying, but in reality, it would be a crushing blow to hear, “You have leptomeningeal carcinomatosis.” Survival could be anywhere from 10 days to 1000 days with that. I think Naomi lived about 1-1/2 years after receiving that news, getting whole brain radiation, lumbar punctures, intrathecal chemo, pleurodeses, and various chemo protocols along the way. I was a helpless spectator, getting it but not really getting it. I’m glad I never sent her flowers. She hated flowers.
I recalled something she wrote, about how the sheet brushing the top of her foot caused excruciating pain, although in general both her legs were numb. Both were caused by arachnoiditis as a side effect of leptomeningeal metastases. Just to illustrate how ignorant I was of the whole situation, I didn’t realize that leptomeningeal involvement signaled disqualification from practically every Phase II clinical trial. Why? Because prognosis is terrible, there’s no treatment except to keep the person as comfortable as possible. No one wants that on their trial data.
So, I need to face it. I need to figure out how I’m going to deal with it, should that come along. Most of what I read says it’s more a function of people living longer past a stage IV diagnosis. In the old days, one died before having further complications of their disease. Or if one was older. So the younger folk who live longer wind up experiencing all this f—-d up disease has to offer. Ah, well. And if it’s arachnoiditis? Well, that’s chronic pain and while manageable, it’s progressive. Given a choice I’d rather have one over the other, but this is where the idea of having one’s spine radiated leaves me to say, See? Radiation CAN “F” you up.
So do I haul off to a clinical trial now, while I so far have no leptomeningeal involvement? That’s the next question and no doubt on my oncologist’s mind. We seem to be on the same page, at least.