Posted by: cg00n | October 24, 2008

So why am I rattled?

There is a pattern emerging here.  Every time I go to talk to the surgeon I come away feeling more anxious than when I arrived even though there has been no bad news imparted.  Why?  She is a personable person, quite friendly and easy-going enough in the brief interviews we have had.  I was expecting today to be an anticlimax because I already knew the results of the poipiteal lymph node pathology report but eventually wound up popping a clonazepam (anti-anxiety) pill when we got home.

The interview began with one of her residents who discussed the path. report with me.  No surprises there.  Then she asked about how my heel was healing and also how the more recent surgery was knitting together.  I told her about the drainage so she got me to lie on an exam table while she looked at it and eventually brought in “the boss”.  The doctor poked around the drainage hole a bit and ended up stuffing some packing into the hole to help wick out the liquid which she said was preventing it from healing over.  I have to go back in two weeks at which point she will decide whether or not to take further action (which will involve daily packing and redressing the hole) to speed up the healing process.  So far so good.

Then we got talking about further followups and that was when I started feeling nervous.  She explained that there is some possibility that the melanoma has spread via the bloodstream (which I knew) and that CT scans hardly ever pick up the presence of cancer before it is detectable symptomatically (which I did not know).  For this reason she doesn’t order scans but prefers to conduct physical examinations every four months since recurrence is relatively likely (which I knew).  I asked what she would be looking for, assuming that the next place this stuff is likely to show up would be in a major organ, and she replied that she would start with my leg from the knee down since that was where it has already been found.  Hard bumps on the leg, pain or swelling might be indicative of melanoma.  If she finds any of these things then “we discuss the options”, presumably hoping that they can be dealt with surgically.  If I find any for myself or start feeling any other suspicious symptoms I can call her office and arrange an earlier appointment.  All sounds fine, right?  Nothing much new there.

So why am I rattled?  It wasn’t just me: P was there and she was upset all afternoon as well.  We have spent most of the rest of the day in fits and starts analyzing this and the best theory we have is that the surgeon has a tendency to stress all the uncertainties without providing any solutions or other comforts to go with them.  Somehow at the end of the interview I felt as though I would be spending the rest of my truncated life dealing with recurrences every four months.  I know that is not rational but that seems to be what kicked my anxiety awake.

What P and I feel we need is a way to cut through whatever is provoking the anxiety and just absorb the useful information.  We have started with two lists, one of positive thoughts and one of negative ones.

Positive thoughts:

  1. good health, good diet, low stress life may help to control the disease
  2. the original site of melanoma is far removed from vital organs
  3. the rate of spread appears to be slow
  4. beautiful CT scans of brain, lungs, abdomen, groin so far. also bone scan, ultrasound, MRI were clean.
  5. we know of others in similar situations who have had no or slow recurrence and for whom treatment appears to yield good control
  6. melanoma does not generally attack nerves => relatively painless
  7. several recent treatments may mature, or a new treatment may arise by the time I need one
  8. many people function very well until a very short time before they die
  9. there are worse ways to die

We propose to use these thoughts (all of which have, I think, come up before in this blog) as antidotes to negative thoughts as follows:

  • high probability of recurrence BUT consider: 7, 5, 4, 3, 2, 1
  • not ready to die yet (ideally) BUT consider: 9, 8, 6
  • possibly reduced quality of life; restrictions of various kinds BUT consider: 8, 7; also: this is an inconvenience; not fatal
  • depression or anxiety may become a problem BUT consider: current treatment working well; Buddhist practices may help
  • surgery, chemo- or radio therapy may be needed in future BUT consider: 5, 3, 2; also: surgery to date seems effective

How does that sound?  A more complete theory as to why we are both reacting so badly to these interviews would really help so if any of you have thoughts that would help, please drop me some comments.  We are both puzzled and confused at our own reactions.

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Responses

  1. This editorial doesn’t have any answers but it appears to me the author experiences exactly the same emotions as you described in this email.
    http://www.dallasnews.com/sharedcontent/dws/fea/columnists/spatterson/stories/DN-nh_patterson_0715liv.ART.State.Edition1.4d95c51.html

    There is another book that is titled, “After Cancer: A guide to your new life,” that apparently has a chapter that covers this check up anxiety. I have not read it … but it is sold out. That could be a good sign.
    http://www.amazon.com/After-Cancer-Guide-Your-Life/dp/0060976780

    I think you are normal … you know it is possible that when you walk out of the surgeon’s door your whole world could be turned upside down again. Your list is a sensible way to go … writing it down helps take it from the vague and undefined fear, to something concrete that can be discussed and dealt with.

  2. I think I tend to be more worried about me when other people (well, people whose opinions I respect) are worried about me. This makes sense — others are often better at judging my state than I am, especially when my state is “mentally impaired” or “ignorant”.

    The surgeon is worried about you. It’s her job to be worried about you and your condition, no matter how positive the outlook. It’s also her job to discuss every conceivable nasty possibility with you, however unlikely. Positive outlooks are not her concern. Could your reaction be “informed person is worried about it, therefore I should be worried about it”? I wouldn’t be surprised if that logic was basic enough to affect your emotions without going via the forebrain for a reasonableness check.

    On the other hand, at this stage I suspect that you are not one of the patients that the surgeon finds herself worrying about in odd moments. More likely she pulls out your file and thinks “Oh yes, this one. He’s doing pretty well”.


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