I'm still trying to get my new pain sets under control. It's mainly in my knees and limb joints and fortunately does respond to pain killers. I visited my pain management specialist yesterday and she was very helpful towards getting some of this mess sorted out.

That's been the defining characteristic of the past couple of weeks, pain in my knees, hard when I walk but even worse when I stand still. My pain management specialist has a great theory that it's bone marrow activity, compensating for the lack of activity elsewhere in the big marrow bones that have had a bit much radiation for blood cell production. The theory sounds good to me, and the alternatives worse, so I'm reserving criticism for now! She also increased my Fentanyl patch dose by 50% and clarified that I should be able to manage without pain on the patches - using the breakthroughs only if I'm in an unusual situation. So, I suppose I return to my earlier instructions: if I start whinging, tell me to shut up and take a pill!

I really don't know how the pain creeps up on me the way it does. For some odd reason I resist taking breakthrough tablets. So, as I experience steadily worsening pain, I get more miserable. But something stands in the way of me recognizing this a treatable pain and because it increases so slowly, I barely notice the change and perhaps even acclimatize myself to it. Fortunately, I generally hear about it from my friends who wonder why I'm acting so weirdly and hobbling around! And of course they tell me to take a pill.

Last week I had another 5 1/2 hours getting transfusions, two units of red blood and 5 of platelets I believe. A long time in the chair, but oddly I didn't read much or listen to music, just dozed and dealt with the nurses as they came by for their regular checks. I didn't even make small talk with the others in the rroom - just smiled sympathetically and politely as they came and went. I noticed that I was getting a lot of pan in my knees that day - and indeed it got worse, even through the movie "Objectified" I watched in the evening. While I enjoyed the the movie enormously, I sure was in pain by the time I got home. It was then
that I realized that I'd forgotten to put my morphine patch back on after my morning bath!

Leaving aside the discomfort, this was interesting for a number of reasons: why were my knees, hips, joints hurting rather than suspected tumour growth areas.. is it under use of my arms and legs? over use? missuse? Then here was an opportunity to try out the sub lingual fast acting morphine I'd been given. I fussed about with the phial and syringe to get the drug out of the broken phial, then after removing the needle squirted .5ml under my tongue. Twenty seconds later, the pain was gone! Very comforting,

Another change I'm trying to get used to is the general shift of emphasis away from my Paraganglioma tumours towards talking about my Myelodysplastic syndrome (MDS) which is sometimes called "preleukemia". While I was resistant at first about putting a name to an unproven syndrome, I'm now coming around to see that this aspect of my health, my blood, is currently the most challenging part of my illness. Unfortunately there doesn't seem to be much that can be done about it other than fill me up each time I deplete my blood counts. I will be visiting a Hematologist tomorrow to talk over some of the options - but there don't seem to be many. The one I mentioned before is perhaps getting single donor matched platelets, which may last longer for me. We'll see.

It's also interesting that my medical oncologist seems to be focusing on my platelets at this time. Possibly because the Sunitinib challenges them, and mine don't seem to be regenerating very effectively. So, the platelet production or retention may be the determining factor for giving me more of the Sunitinib. I do not miss this unpleasant drug in the slightest - I still seem to be experiencing side effects from it. I hope that it's effects on my tumours are as persistent! The small yellow stained cells in the illustration are platelets.

http://viewcourt.vcn.bc.ca/peter