Loose Strife

Over the last week Laura has been in surprisingly good spirits even as her sundry problems continue to worsen. Her vision and balance is further deteriorating, which is her main complaint. Getting around is annoying and sometimes difficult. Laura can’t decide whether the double vision is better than the loss of depth perception if she covers one eye.
My biggest disappointment is that she is now able to eat only soft foods because she can’t chew well. And swallowing is sometimes difficult. To me, those are ominous signs. Or at least that’s mostly been my attitude.
There has been an on-going concern for a year now regarding what to tell our daughters and when. Of course Naomi and Lily are well aware that Laura’s sick, that she has something called “cancer”, that it has continued for much longer than most people are sick, and they are reminded of Laura’s problems every day seeing their mother and also getting shuttled around to accommodate the logistics for hospital stays and frequent (now daily) appointments. But we had decided that it was premature for Laura to tell the girls (Lily, the older 5 year old, in particular) that she might not ever get better. And Laura still isn’t ready.
Yesterday Laura said that she thought of her current troubles as yet another low point to get through and that the girls don’t seem to be taking much notice to the current situation. I told her that I thought that the kids were taking notice to very major changes happening almost every day. Laura responded that maybe she was being delusional, but she had been through tough times before.
She has repeatedly talked about getting a physical therapist to give her exercises to improve her facial muscle control, as though she had a stroke and needs rehabilitation. And she asked whether she should go see a doctor about her double vision — ignoring that she recently saw her eye doctor and spent many days in the hospital with a neurology team. Then she raises the prospect of drug interactions.
I worry about her wishful thinking and seemingly naive attitude. What’s going on? Who’s right? Does it matter? I’ve felt so pessimistic in the last week and I’ve been dismissive of Laura’s efforts to explain away her symptoms. But even if Laura doesn’t seem to be rational to me, who am I to tell her what’s “really” happening? Maybe her attitude is a practical, if not rational, way to cope with a tremendous fear.
In any case, I’m not exactly consistent either. My attitude seems to flip flop every couple days, so how can I judge? After all, I urged her to choose intrathecal chemo (ultimately a bust), while she was too exhausted to want to act. And later I felt hopeless that anything specific could be done for her, while Laura wondered what she could be doing to improve her symptoms!
That’s about how I felt on Friday, when I flipped again. I had heard Laura talking to a friend and try to blame her current condition on her drugs. I knew that was absurd; her symptoms — the speech and mouth problems, the troubles walking, and others — were expected from advancing leptomeningeal disease. But then I read the side effects for Zyprexa, the neurology drug that she was given after leaving the hospital. The drug was prescribed because her neuro-oncologist had personal experience that suggested it was anti-emetic (keeps you from throwing up). Immediately after she started it, Laura stopped throwing up, so I was sure it was due to this drug. But I also saw that the “serious side effects” included confusion, drooling, severe or prolonged dizziness, increased thirst, tremor, trouble concentrating, speaking, or swallowing, vision changes, and several other suggestive symptoms. I got her neuro-oncologist on the phone, and I said, “You’ll be surprised to know that since we left your office a week ago Laura hasn’t thrown up or had a headache, but now she’s got a whole host of other troubles,” which I rattled off and linked to the Zyprexa label. Indeed he was surprised, and then he shocked me by saying, “but Zyprexa probably isn’t keeping her from throwing up — it’s probably the steroid. I think it’s very unlikely that Zyprexa could be fully controlling her vomiting and it’s also very unlikely that it is causing her new symptoms. But she can just stop taking it and find out!”
Then I saw myself suddenly as the irrational one having spent a week watching Laura suffer new troubles when it was possible that the cause all along was not cancer, but yet more drug side effects! I tell Laura about my new “guarded optimism”. She’s nonplussed (grrr!), but doesn’t mind going off the drug. Every six hours or so when Laura would have been taking the drug, I ask her instead whether she’s feeling any better or worse in any way. Now it’s been two days later without the drug and there’s no change. Another let down. Who’s being delusional now?
It doesn’t stop there. Today we went to Northampton to mass and then to visit with some friends in town. Despite her best efforts, Laura could not keep herself awake in church or in the car. Oh shit. What’s going on now? I got scared and left a message for her oncologist to call me. Months ago we were told that Laura would become increasingly tired and probably die in her sleep when she passed away. Was this the beginning? I calmed down a little after Laura woke up and started visiting normally. Then she took a nap at our friends’ house and while she slept I talked about how Laura appears as though she had a stroke. And suddenly I wonder whether she did have stroke! I add this possibility to my mental list of questions for her doctor, who hasn’t called back, yet, but I decide to just wait until the morning. I add diabetes to the list for good measure. I know I’m being a manic schizophrenic.
All the while, life goes on. We hurried back home to Ashfield to pick up a new babysitter. Laura and I had tickets for the annual Iron Bridge Dinner in Shelburne Falls. 400 people arrayed across the bridge, eating a meal prepared by local chefs. Sounded great until it suddenly dawned on us that Laura can hardly chew. Why the hell are we going out to eat?!
To our delight, it worked out OK after all. In fact, it was fun. Laura slowly managed tiny bites of almost every dish and even enjoyed some conversation with strangers at our table. We were both really pleased to make it out on a date and have fun. Laura’s main disappointment tonight was that she was unable to smile, but she still looked great.