Posted by: cg00n | August 10, 2008

Incisive Decisions

I should have got around to posting this yesterday but I was too exhausted by the time we made it home.  Get ready for a long and rambling posting because I have been all over the place this last 24 hours or so.

Monday through Wednesday were fairly tiring, mostly spent working on my lemon car.  We were on the road to the city by 08:30 on Thursday for a 10am appointment with the psychiatrist.  That meant I was up around 07:30 which (as many of you know) is more or less the middle of the night as far as I am concerned.  The session was mostly concerned with P who has been struggling with the stress load recently.  It went well, and all three of us spent the rest of the afternoon checking out the Buskers’ Festival and eating a four-course lobster dinner.  All good except that we didn’t get to bed until after midnight and I didn’t go to sleep until after 02:00.

Yesterday (Friday, that was) we hit the road again for an 11am appointment with the surgeon.  My gut was being grumpy, not unusual for me especially after the big dinner from the night before.  The consultation was useful and resulted in my agreement to go through with the removal of the rest of the lymph nodes from behind my knee. (The surgery will probably happen in early September).  That said, I wish there was more compelling evidence for having this done.  Although 30% of patients with a positive sentinel lymph node also have infection in other lymph nodes of the same basin, removing all these nodes does not actually appear to translate into a 30% improvement in survival over leaving them alone until there is swelling.  In fact, I am told, the statistics show very little difference in the survival rates.  In addition to this the procedure is a little more elaborate than I had thought and will require an overnight stay (at least) followed by two weeks on crutches – again.  Two side effects also concern me.  The first is damage to a particular nerve that can result in a condition called drop foot (I think); this happens in 1%-2% of cases and results in one having to wear a brace thereafter.   The other is permanent lymphatic odema, fairly pronounced swelling of the lower leg.  It would be so much easier for me to justify the surgery if there was a clear advantage, but as with so much about melanoma there isn’t.  My only real consolation is that the general surgeon, the plastic surgeon and almost everyone else who has expressed an opinion thinks this is the right thing to do.  As Dr. D.L. of Calgary put it:

I think you are absolutely right to get the rest of the nodes in your knee removed.  If it were me I’d worry about what was going on in there every time I looked at my knee and I’d consider the peace of mind from not having the nodes a good trade-off for a putative swelling.

More peace of mind would be good, but I don’t know just how much I’ll get.

Once the consultation was over P and myself went and sat in a park for a while to chew over the results.  Part of the problem with these consultations is that they stir up all the jetsam that has already settled, raising the big, scary spectres of disease, suffering and demise that we had hoped were safely contained for now.  It feels as though I have taken a large step backwards into the murk.  There is nothing rational about this perception but I find it quite panic inducing.  We went on to meet A for lunch and managed to get her all upset as well.  The only bright spot in the afternoon was a couple of excellent acts at the Buskers’ Festival that we caught before the rain caught us.  We got home at a reasonable hour which was the last relatively good thing I can say about yesterday.

If I could change one thing about myself and live my life over it would be to care a little less about the feelings of all those around me.  When I used to get depressed, long before P and A came along, I could just ignore everyone else, crawl off into my cave and mope to my heart’s content.  There was no one else close enough geographically for me to upset, so I didn’t have to worry about anyone but myself.  The situation now is much more complex.  Firstly, depression is no longer the worst problem:  I can get panic attacks which are (to me) much more serious.  Secondly, once I start panicking I find it hard to stop; I become anxious that the panic won’t go away.  Thirdly, I worry about the effect this has on P and A.  I have turned nose-diving into a basket case into an art form.

Last night, when we got home, I realised that the new cupboards we’d had built and installed (at great expense) in our “media” room are just too shallow to accomodate my vinyl LP collection.  This was the last straw for P who was in tears of frustration.  That dragged me below water level.  When A came along and asked us what was wrong she just could not make sense of our answers and it was obvious that she was getting miserable and worried about the two of us.  So P and I went upstairs where we talked and I tried a trick suggested by a friend:   lie on your tummy and cry until you feel like stopping and see if your mind throws up an issue that lies behind it all.  What came up in this case was: “I am afraid that I will not be able to cope with the future”.  What I have to fear is fear itself.

Oh no, not again.

After I’d cried myself out I felt much calmer and totally exhausted, so I managed a pretty good night’s sleep.  But today was pretty rough and around 4pm I gave up trying to generate a sense of calm and took a chlonazepam  which did the job in about 10 minutes.  I’m feeling OK now, about 8 hours later, and I plan to get some sleep RSN because I am still feeling extremely tired.  Maybe when I’ve caught up on sleep I’ll be better able to cope without the chemical assistance.

None of this panic makes any sense.   I wish I could get that through my silly little head.

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Responses

  1. I think that you were just tired out by all of the effort that you had to put into making all of your medical appointments and could not think rationally. Perhaps you will have a different point of view on a better day.

    I just wanted to point out that the statistics are just percentages and it takes a lot of patients to make up the statistics. You may fall on the high side or the low side of the statistical average.

    Being mathematically minded, the 30% figure you mention just means that in 30% of the cases it was probably a good thing to have all of the lymph nodes removed. So by having the surgery, if you fall into the 30% who should have had this surgery you will have reduced the risk of the cancer spreading.

    I completely agree with Dr. D.L. of Calgary. If you don’t have the surgery and something happens, you’ll question your decision to NOT have the surgery!

    You also cite the side effects & it seems like the risk of these side effects are fairly low. What you were doing was “catastrophizing” (is that a real word?) imagining the worst possible outcome of the surgery and of course it got you down.

    Try to put this into perspective and think about where you thought you’d be when you first discovered that you had cancer and only a short time to live.

    I hope this helps, but if this doesn’t make sense at the moment, put my advice aside and come back to it at another time.

    Lots of love,
    Lilly

  2. Emotional responses to stressful situations are real and can be debilitating. It was a good move to work through it with P rather than on your own … you might both have felt worse in isolation. Protecting A was also wise. Needless to say she knows what is happening but is too young to bear all the burden of it. It is sensible to use anti-anxiety medication. They often work quickly and help you deal with those very difficult times that are driven more by fear than eminent danger. It might be easier to face the fire breathing dragon standing before you than the one within that lurks in the shadows of our mind.

    Each surgery is a big event. It is also part of grieving for what this year was planned to be.

    Knowing that the medical appointments dredge up emotions means it would be good to plan for this in advance. For example you might also let your physicians know and ask them to alter how they present information.

    I have read that “The night is darkest just before dawn and sunrise,” and “Happiness comes in stages after successive runs through the dark night of the soul.”

    B is only six but his daily prayer includes A’s Daddy. I’m always right there with him.

    Calgary is less because A, P and yourself moved away. You are missed.

  3. YES for lobster dinners.

    This depression thing is driving me nuts–something you can’t control is being attributed to all sorts of ways to kill you earlier. Oh, thank you so very much–this is what I signed up for becoming incarnate? Feh.

    However, I see your depressive episodes and raise you one bipolar episode of nadir.


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