Hurry Up and Wait

It's getting harder for me to find ways to share what seems like the same old information.  To make our lives seem more interesting to read about than they probably are.  As I sit here preparing to give you the current run down from our visit to Dr's. Mayer and Mansfield I'm putting myself in your shoes and thinking about what it must be like to check the blog and read the latest update on Phil and our family.  Do our lives sound as mundane to you as they feel to us?  Are you getting as antsy to move on with treatment as Phil is?  Are you waiting for a new story line - ready to hear more than "keep on taking the Ambisone, schedule another MRI in 2 weeks, and yes, no more chemotherapy for the time being"?  Well, join the exclusive club known as "hurry up and wait".


This week however we had some great news to add to our blog in that Phil's creatinine, at 1.47, was at an all-time low.  This means his kidneys are functioning very well with the Ambisone and he can now start the iron-binding medication Exjade twice daily.  Mucor, you may recall, needs the iron to replicate.  Exjade robs the the Mucor of iron.  This is just one more way to combat the Mucor and hopefully send it packing.  Dr. Mayer continues to emphasize that Phil has a small area in his brain that is essentially inoperable without risking serious neurological deficits so these medical therapies are his best bet for getting at this infection.


This afternoon Dr. Mansfield must have put about 12 different instruments up Phil's nose in order to "get a better look at things".  Not for the pushovers of the world is ENT.  I know why I called him a Zen Master.  He is one smooth operator.  Anyway... Overall, Phil looks great to him and he saw no signs of Mucor.  He did take cultures of some purulent discharge (pus) he saw in there (sorry squeamish people) and we'll await those results but there was no ischemia (reduced blood flow) or necrosis (dead tissue).  He will be seeing Phil after the next Skull Base Rounds in a few weeks and will add on some additional studies to Phil's next MRI which will happen on Monday the 15th.


Until then, it's start the Exjade and see what that does over the next month or so.  When asked how much longer on the Ambisome, Dr. Mayer's reply to Phil was, "awhile".  So, there you have it.  Awhile, folks.   Just another way of saying "hurry up and wait" which of course is easier some days than others.  Thankfully, the lymphoma is still quiet which has afforded Phil the "luxury" of waiting.