2015 started off with a successful stent swap on January 2nd and my every 3 month meeting with my oncologist today. I will have a meeting with the Nephrologist next week and then will see the Vascular Surgeon a month or so after that.
So, where are we now? The title of this post says it all as everything is grossly stable but here are the details:
The tumor in the lower lobe of my right lung hasn't changed much and the pleural eflusion that has been accumulating around the lung seems to have stopped accumulating and has not changed significantly. This means that, at least for now, I don't need to get a permanent tap installed to support continued draining of the fluid as long as I can tolerate the currently decreased capacity.
My kidneys also are grossly stable with my creatinine level sitting between 3.5 and 3.8. This is solidly stage 4 kidney failure but it has not budged in the last 8 months or so and, if anything, has decreased somewhat. My decreased liver failure has caused my current anemia but the injections of aranisp (synthetic EPO) has been maintaining my hemoglobin level at about 11. This is still low for a 'normal' person and is a far cry from the 17 I had 2 years ago but it is sufficient to continue playing hockey and ski.
The result of this is that dialysis continues to be put off and will be for the foreseeable future which is awesome!
Carcinoid syndrome is the one place that is not completely stable. The diarrhea has been increasing, even demonstrating some fat malabsorption at times. We are going to try higher levels of imodium and also add lomotil to the mixture to see if we can bring the diarrhea under control. Similarly, the flushing due to physical exertion has been on the increase, starting to show up when I walk up two flights of stairs at a reasonable pace. We will try adding some additional sub-q sandostatin prior to known periods of exertion to address this.
Bowel obstructions don't seem to be immediately apparent but they also are to be something that shows up without any warning. I have the occasional abdominal cramps and worry every time that it may be an obstruction but, fingers crossed, it has not happened yet.
As I mentioned at the start, I continue to have my bilateral ureteral stents swapped out every 2-3 months and my urologist is getting to know his way around my plumbing. A normal swap takes him about 5 minutes at the most but my swaps have taken as long as an hour to complete. This last one took less than half an hour and had minimal pain afterwards. As long as he is able to continue to swap out my stents, I should remain dialysis free and can avoid the dreaded percutaneous nephrostomy...
You may recall that, for several months this past summer, I had been experiencing regular fevers of 101 to 102 every evening. We tried several things to address this, even seeing an infectious disease specialist but could find no cause. Well, my third stent swap of 2014 seems to have cleared this up which seems to imply that it was some sort of persistent urinary tract infection that got removed with the stent swap.
My energy level has improved quite a bit and the walk into work is not as oppressive as it was at the end of the summer. Similarly, my continued chills seem to be lessened which could be a combination of many of the above.
Where do we sit now? Well I am more optimistic than I was 6 months ago. The repeated hits of lungs, kidneys, fevers, ... all had me thinking much more about my mortality but this has been pushed further into the back of my mind. The sword of Damocles is still suspended above my head but the hair suspending it seems to have been reinforced. I only have 6 ski days so far this year but 20 seems to be in reach. I still suck as a hockey goalie (I give sieves a bad name) but I can get out there once a week for fun.
Tumors will continue to grow, new metastases will appear and other violations of my body will occur. Grossly stable is a great place to be for now.
