Loose Strife

This week has been tough for Laura. She hasn’t had a real meal all week and is continuing to slowly lose weight. Headaches are more frequent. Her back and neck pain has worsened, but it’s not clear why; her scans showed no worsening in her bone mets, so maybe it’s from spending so much time in bed. While none of her symptoms is very acute, it’s all ominous and worrisome and depressing.
I talked with her neuro-oncologist at Dana Farber on the phone on Thursday. There are two probable causes: either progression of the CSF mets or a failure in the shunt. (A third unstated and unlikely possibility is drug interactions.) Since she just met with her neurosurgeon on Tuesday and he looked at the brain MRI, it seems unlikely to be a shunt problem. But her symptoms are similar to her early stage hydrocephalus last year, which the shunt ultimately eliminated. Her neuro-onc recommended that Laura get another spinal tap to check her CSF pressure to definitively eliminate the shunt as a cause. I checked back with her neurosurgeon on this and he agreed.
But Laura doesn’t want to go the emergency department to get it done.
We had a long meeting with her general oncologist yesterday (Friday). It was one of those very difficult and emotional “there are no right answers” sort of meetings. Laura wasn’t talking much; just sat with her eyes closed. I went through all the details of the last week with her doctor — her symptoms and the responses from her eye doctor, neurosurgeon, and neuro-oncologist. I raised some options that Laura and I had discussed about taking a “chemo break” and reconsidering intrathecal chemotherapy.
Her doctor had me leave for a while so she could talk with Laura to try to determine what she wanted to do. But that was inconclusive. When her doctor came out to the waiting room to fetch me, she said, “I don’t know. Laura doesn’t know.” Laura was too exhausted and confused. Her doctor left us alone to talk some more.
The way her doctor framed it, Laura has three options: go to Dana-Farber, get a spinal tap, and begin intrathecal chemo; continue with the current treatment; or switch to a palliative care mode. Laura’s organs aren’t failing, she’s mobile, and her problems aren’t severe, just persistent and draining. So it seems a little odd to be making a major treatment decision, but if the forecast looks grim then it makes sense to set the right course sooner than later.
Laura said she didn’t want to go to Boston. To her it represented the kind of treatment that she didn’t want: in the hospital far away from home and kids. The truth is that it would probably just be a day or two away from home, but Laura said that she wasn’t ready to try intrathecal chemotherapy.
I’ve described intrathecal chemo before. It’s chemotherapy injected directly into her central nervous system. It’s a lousy option because the chance of response to treatment is in the 10-18% range, the chance of bad side effects of serious headaches and vomiting for days is significant, and the increased survival time for responders is typically only weeks. Nobody has pushed it on her, but it’s a common treatment option among patients with cancer in their CSF. To me, it seems a little more acceptable than I thought in the past. Laura’s CSF cancer seems to progress slowly and she responded very well to radiation, suggesting that she might have a prolonged response to such chemo, too. If she experienced bad side effects, then her neuro-oncologist said that she could simply stop further treatments. The treatments themselves would be one-day trips to Boston every couple weeks. Since she already has the shunt, no surgery is required to begin the treatment, so it seems like a low risk shot in the dark.
But Laura’s not ready, yet. She wants to take a drug break (as much as possible) for a few weeks to see if she feels any better off of chemo and other drugs. Her oncologist isn’t keen on the idea, but doesn’t object. There’s the unlikely possibility that her current treatment is a flood gate and as a doctor she feels an obligation to treat. But Laura has had excellent quality of life while off of chemo in the past and there’s a sense that she would gain some peace of mind knowing that the drugs themselves aren’t causing her troubles. It seemed important to emphasize to her oncologist that Laura wasn’t giving up and was prepared to make new treatment decisions in several weeks depending on her condition.
But in the meantime, to eliminate the possibility of a mechanical failure, Laura wanted to get her shunt checked with a spinal tap. So her oncologist told her to go right away to the ED in Springfield. But Laura balked. She said she just wanted to rest and not get stuck in the hospital.
And that’s where we’re at this morning. Maybe I can convince her to go today.