R is for React

Reacting is something I do every time I get new results that throw me a curveball and I often overreact.  I want to do something.  I want to be active in treatment and I want to do everything I can to address the new results.

The downside is that I often don't have a full picture when I get these results or run into this curveball and I start to speculate without full information.  The internet is fantastic for getting information but we often don't have sufficient knowledge to put that information in context.  This is partially due to my lack of medical training and partially due to the amount of information that is available.

Two recent examples of this are my failing kidneys and my collapsed lung.  With respect to the kidneys, I had myself on dialysis 6 months ago.  I was certain that they were ready to completely fail immediately and that I was going to need dialysis for managing that failure.  Here we are, almost 10 months later and I am still not on dialysis.  I am ready for the machine when that time comes and have a fairly good understanding of what it involves but, at least for now, my kidneys are in a stable state although frequent stent changes have been required.

My lungs are a similar story.  About a year ago, we first noticed something on my lungs and had come to a conclusion that it was probably a rounded atelectesis.  This seemed reasonable and we just continued to monitor.  About 6 months ago, a CT scan showed that the area was growing and that then meant that we almost certainly had some sort of cancer.  'Normal' lung cancer had no blood test or other method of verifying other than obtaining a sample and the area of the lungs gave a low probability of obtaining a sample.

A couple of months ago, part of my lung collapsed and the bloody pleura almost certainly indicated some sort of metastases.  The pulminologist did not suggest any solutions other than going home to wait to die and that news hit me very hard.   I passed this news on and then hit the net for information on what can be done.  Finding that surgery was an option, I was then certain that I was going to have surgery immediately but, here I am, months later, still without any direct plan on what we will be doing.

What I do know is that an octroscan shows activity in the area of my right lung.  Of course, the way an octroscan is done, it is difficult to determine if the reaction is in the lung or the pleura of the lung.  Given the CT results, I am fairly certain we know that it is in the lungs.  Next week, the New Orleans group will be discussing my results and we will find out what we do at that point.  Surgery is still on the table at some point because we need to either address the cancer or the continued return of lung compressing fluid.

Reaction is natural but it is something that I need to contain those feelings.  Obviously, one can go too far with lack of reaction and not respond enough.  Somehow, Stephanie and I need to strike a balance between over-reacting and ignoring the results.  If I had to pick a side on which to err, it will always be over-reacting because at least then I feel as if I am doing something.