Loose Strife

Laura’s been doing about the same over the last couple days. Maybe a little more pain. But mostly she’s frustrated about her fatigue and irreversible troubles like her double vision. Her fatigue continues to be severe — as I mentioned last time; she struggles to keep her eyes open most of the day. And so she’s frustrated because she has too much to do, she says: mementos to sort through, letters to write to the girls as they grow older. She makes lists and more lists and recompiles old lists — partly because of memory loss, but mostly because she just wants to get things done. Lots of mundane things that I want her to forget about. (Buy an extra plunger or new blinds for the bedroom.) Other things are gifts and related. (Maybe that used book store will have a specific book for so and so.) Laura is thinking a lot about what she wants to leave people and frustrated that she can’t get it all done.
Yesterday she asked me to pick out a box each evening to give to her to sort through. She wants to sort things into throw-away, precious, and characteristic. But she’s been too tired. Ten days ago the steroids had her wired and she was bouncing from one topic to another with intensity, but she doesn’t have that energy anymore. Yesterday evening I found her crying in bed because she heard the girls and I laughing and playing games outside in the yard, and she was overcome with grief that she would miss so many happy days in our lives. She said she cried because she was so tired that she couldn’t bring herself to come outside — robbing herself of joyful times even while she is alive.

Her doctors aren’t offering anything to improve the situation. On the contrary, they’ve been somber and comforting, but said that her sleepiness is most likely due to advancing disease. It could also be partly due to radiation and so it’s possible that the situation will improve when she finishes her radiation treatment at the end of this week. When I tell the doctors that it makes me anxious — that I’m frightened that she might not wake up — neither her oncologist or radiation oncologist contradict me. They say sleepiness is symptomatic of progression and they seemed to specifically avoid giving me false assurances. During this conversation with her radiation oncologist today I also mentioned how I wished Laura could rid herself of the burden of her long task list, and Laura replied that she didn’t want to because she worried that if she gave up on her lists, then her body would give up, too.
Also today, Laura asked her doctor if there was anything that could be done about her double vision — or for that matter any of her other handicaps. To which she was told that there probably wasn’t — save the remote possibility that her current radiation treatment could improve her symptoms. The thought that you are permanently disabled is a hard pill to swallow. Besides the awful sadness about it, Laura feels a sense of guilt that she should be “doing more,” whatever that might mean, to fight her disease. That maybe others expect her to not give up. When the home nurse visits began again this week she wanted the “palliative team” not hospice because hospice has all the associations with death and the end of curative treatment that she doesn’t want, yet.
Her feelings of not letting go are probably coming from the same place as my foray into the “what ifs” that I wrote about last time. It’s awful to worry that somehow maybe Laura is misdiagnosed or being mistreated, but it seems unavoidable to obsess over it. And her oncologist is very kind about it, telling me that it’s important for me to feel comfortable knowing that other possibilities were reasonably rejected. She willingly indulged me and had Laura checked for hypoglycemia and we talk about the links between some of her drugs, diabetes, and stroke. With a little imagination and some google searches by this time last night I had worked myself up to almost a level of fear of malpractice. But I’ve settled down again. For example, my obsession with stroke recently is pretty much immaterial; it’s remotely possible that she had a stroke, but there are many good reasons why she probably didn’t, and even if she did then her treatment wouldn’t differ. I need to let it go.
All this somber writing of late probably makes many of you as anxious or more so than me because you’re not here to see Laura walking and talking, visiting friends, traipsing through stores, shuffling around the garden. If you were here I think you’d probably find our heightened anxieties this week to be premature. One of the visiting nurses said to me this morning, “if it makes you feel any better, Laura’s vital signs are just fine and she sure isn’t showing any signs of imminent demise.”
If you’re in Virginia this weekend, you can see for yourself. Laura decided that she wanted to see her family again before school starts. And when school does begin, Laura told me she’s looking forward to the weekdays when the girls will be out of the house for hours and she’ll have more time to get things done!
P.S. I’ll close with a quick follow-up to a comment I made in the previous cancer post when I was trying to illuminate how Laura seemed to me to not be accepting the reality of the situation (as though that is necessary!). In that context I talked about what we say to the girls and I said, “But we had decided that it was premature for Laura to tell the girls that she might not ever get better.”
This touched a nerve in several of you and I received advice essentially along the lines that there is no reason that Lily and Naomi need to live the coming days in constant fear that their mother will die. I totally agree.
Writing about kids is tough. I often don’t have very coherent thoughts about it and it’s a very emotional and contentious topic. I hate being in this situation as a father and I hate the fact that I could be doing so much more for my children in so many ways that I’m not. But I’ll tackle this one anyway.
Many kids (and probably ours, included) worry and imagine scenarios that are unlikely to pass. And so we think it’s important that they don’t suffer unnecessary anxiety over the unknown and that means that we need to be open with them about what is happening. For us this means making sure that they feel free to ask questions and they get honest, simple answers that they can understand. Now in our case our kids don’t like to ask the really scary questions for the same anxious reason. They’re OK with “why are you wearing an eye patch?” but you won’t hear them ask, “are you going to die?” Even though I’m sure it’s there, we have no intention of answering this question without prompting. Nevertheless, we also think that it’s important that we don’t sugar coat a dire situation so that the reality catches them totally by surprise.
I don’t mean to suggest that we would force on them some hard truths and crush their spirits. I only mean that we don’t say things like, “Mommy is in the hospital so they can make her well” and when we talk about treatment we might say something like “some people with cancer get better when they take this kind of pill and others don’t.”
Laura and I have spent a lot of time talking with experts in child grief and behavior and it seems that the most important points are to be empathetic, to encourage them to articulate feelings, to answer questions truthfully, to not deceive them, and to ensure that they are not left out if they want to be involved in whatever is going on. We’re led to believe that acting in these ways tends to result in children who can better cope with traumatic events. I hope that’s the case.