The Not-so-gentle Answer: 12. Refractory

12. Refractory means “no idea”

Lately, when people ask me “how are you?” I have to choose between being polite and being accurate. Most people get the polite answer “I’m still standing”. It turns out I may have been too gentle. 

I have managed to out-live all of the predictions made by my specialists.  In my context “refractory CLL” means specialists say “I don’t know” quite often.  In the run-up to  Christmas 2013 I was very ill, and didn’t look like surviving to Xmas day.  My short-term aspirational goal was Rowan’s degree confirmation ceremony in late June.  At that time  I was having 4 or 5 bags of red cells per week.  My neutrophils were basically zero, and the platelets were no better.

Something happened in January. No-one knows why, but I stopped being quite so ill and there was a general upwards trend in my haemoglobin levels, which meant more energy and some colour in my face.  This has resulted in only 5 red blood cell transfusions to date this year.  There is a similar upwards trend in my neutrophils (good white blood cells), meaning it is a whisker safer to get out and about seeing people.   The platelets continue to suck. My oncologist reminded me today that the disease will eventually run its course, no matter much it is taking the scenic route at the present.  I accept this gift.

It hasn’t been all plain sailing.  A couple of weeks ago I had a migraine, except it wasn’t a migraine.  My speech got abruptly worse, and I started dropping things, and I was irritable and irrational for a couple of days.  In all likelyhood it was another sub-dural haematoma.  One of the drugs I’m taking is to make it take longer for my body to re-absorb internal clots with the hope that if a clot forms that it will stay long enough to do some good. It appears to be working.  That second sub-dural haematoma appears to have quietly resolved itself with little damage.  Much as I dislike the label, this is a kind of haemorhhagic stroke.  I accept this gift.


Advanced Care directives

I would prefer to die at home.  I was surprised that this was MT’s first preference as well.  MT said “you have to understand that I’m going to throw out the bed, the mattress, and the bedclothes, and everything”.  The palliative care nurse, said “don’t worry about that, we will get you an electric hospital bed, and we will take it away afterwards.”

MT and I spent some time working through the Advanced Care Directive sheet supplied by the hospital.  It turns out all the therapies I am prepared to accept, can all be delivered at home.  IV drugs, oral drugs, blood tests, blood transfusions, supplemental oxygen, etc.  ICU is pretty much out of the question (the statistics on resuscitation are dreadful).

With my lung function down to 48%, if I get a chest infection, that could very rapidly become life threatening.  So each night I take the asthma preventer, and briefly wonder if I’m going to die in my sleep tonight. I don’t stay awake getting super tired for fear of sleeping.  And if I die in my sleep it will be quiet and painless, really the best possible outcome.  I accept this gift.


Are you scared?

Am I scared of dying? No. I have no difficulty imagining a universe without me in it.  I don’t demand to be kept around forever, to be consulted with, not that I’ve noticed any consulting when I’m alive, so why should being dead be any different?  Insisting you are utterly essential to running the universe is pride, a kind of overweening pride, hubris, and that is a mortal sin.  Nor do I demand another turn on the wheel of life.  It has never been my goal to reach some kind of afterlife, call it nirvana, or heaven, or any of several hundred names.

Am I scared of living? Yes, sometimes. I have no wish to burden MT or Rowan with a vegetable to look after for life.  It is one of those dreadful resuscitation outcomes I wish to avoid.

But right now my brain works well enough that I can write some code each day, and do some wood-working each day, or swap hemispheres if things are too hard.  I am pain-free, and I don’t need a walking frame.  I’m still standing.  I accept this gift.


What Colour is your blood?

Red, I see enough of it each week to be sure.  Leukaemia derives from leuko meaning white or clear (the plasma portion in the test tube after you spin it in a centrifuge), and kemia meaning an excess.  If it was  a scarcity the suffix would be penia.

Fun scrabble words:

  • leukaemia, an excess of (bad) white blood cells
  • anemia, too few red blood cells to carry haemoglobin
  • neutropenia, too few of the good white blood cells
  • thrombocytopenia, too few platelets
  • pancytopenia, pan meaning all, cyto meaning cells, penia meaning fucked.