Part I: What Would You Want?

I don't know what I would do.  I know what I think I would do, but I don't have any way of actually knowing, not really.  However, I do know exactly what I would want.  

I spent the last couple of days trekking southwest across the state and back so that I could accompany my stepmother and father to her one of her oncology appointments.  I had been under the impression that she had had several body scans to assess the complete situation with her lung cancer ( 3 lesions), which has metasasized to her brain (ten more), and that their visit would be a traumatic one.  I was wrong about the nature of both scans and visit -- the oncologists work independently, so this was a lung assessment only.  The look at the brain doesn't come for another couple of months.

There is, sadly, no whole-body, whole-person approach to cancer in our highly technological culture, a situation which was about to be dramatically clarified for me.  (Would you be  surprised to hear that I have some suggestions for improvement?)  

We waited for a little over an hour in the typical university hospital setting: uncomfortable chairs and seating arrangements, no windows, harsh flourescent lighting, cheerfully impersonal nurses dressed in bright whites and even brighter colors, scintillating reading options (cancer in its various guises).  I am usually keenly aware of my environment, and I found this one miserably suited for the patients at its focus.  (Of course, if you think that the real focus is the people who work there, rather than the people they serve, then it's probably pleasantly crisp and energetic.)  

Once we were moved into an examining room, we got the usual visits: a nurse who asked questions and wrote everything down, an intern who asked the same questions but did open the chart and reveal that my stepmother's lung spots have responded somewhat to the weeks of chemo, and finally the doctor, who confimed what the intern had said and announced that he wanted to continue with the chemo, although on a slightly different and somewhat harsher  regimen.  

My father and stepmother accepted all this with equanimity, asking few questions and struggling to understand the details and scheduling of the next portion of the chemo regime.  I asked how long it would continue, and the response was "three months, unless she gets to the point where she cannot tolerate it."  That didn't sound so good to me, so I asked how she was likely to respond to this newer, tougher regimen, mentioning that things had been brutal so far.  That comment elicited a bit of hostility on the doctor's part; he glared at me and told me that I obviously had little experience with chemo if I thought that what had gone down so far was brutal.  He told me that people who do chemo usually "do better" than people who do not.  

It was apparent that my father and stepmother were not up to a recitation of the situation as I see it, so I shut my mouth.  They finished up the meeting, desirous of nothing more than to make their exit, and headed down to the main desk to get their new schedule.  I waited in the hallway for the doctor to respond to another couple of phone calls and talk to his assistants, and was then able to have a brief conversation with him before he was pounced on by nurses with matters clearly more pressing than any conversation with me.  

The doctor was reasonable and somewhat informative when I pressed him for answers.  He told me that he was aware of her limitations -- which I am sure he is not.  She is awake and alert for maybe a total a two hours a day right now, during which time she sits or lies on the couch and talks to my dad and whoever else is around.  She has slept on the couch almost every night for the past six weeks, because going to her own bed involves stairs, and stairs are for her a long and difficult ordeal of  one step at a time followed by a rest to catch her breath.  Her ability to even stand, much less walk, without assistance is completely compromised, by a combination of her inability to breathe and the numbness  in her hands and feet ( common side-effects of chemo). Her vomiting is largely, but not entirely controlled -- she mostly retches  up gunk from  her lungs, which she did at length on the way home and again in the restaurant where she was determined to have lunch afterward.  This is a woman who in September was canoeing in Canada.   

What I most wanted to know, therefore, was what he meant by "doing better" on chemo.  As far as I could tell from his response, "doing better" means "living."  Living for maybe twelve months as opposed to six.  Living, I think, assuming things get no worse with the new chemo protocol, as she has been for the last several weeks.  Of course, it is unclear to what extent her disabilities are caused by chemo, by radiation, and/or by the cancer itself.  He answered a few more questions about her prognosis and other options before he was whisked away by the nurses, leaving me with two clear impressions.  For one, he is more than willing to attempt to answer questions if they are succinctly and directly posed to him, but he does not offer one iota of information beyond that specifically requested.  And secondly, the so-called "Cancer Center" is in desperate need of social workers to participate on its team, accompanying doctors on their visits and creating space for patients to ask questions and understand options, to express their concerns and fears, to enable them to be treated as "whole" patients rather than as lungs or brains.  

I am a person who likes to understand every aspect of a complicated situation, to ask endless questions and to make my own decisions.  Most people in critical medical situations are trying to process more information and emotion than is humanly possible, and are quickly overwhelmed by the complexity, scheduling, and language of a medical facility.  They are not in a position to insist on obtaining the information and clarity that might make the next step more comprehensible.  

What would you do?  What would you want to know?  What choices would you make?  

As it turns out, my brother and I have one answer to that set of questions; my husband and daughter, a very different one.  That's  a topic for another entire entry.   

 Midwest Midwinter Sunset