Status Update: Nov. - Dec. 2010

Nov. and Dec. of 2010 was a pretty uncomfortable time.  On the one hand it was great to be out of the hospital, but on the other, my expectations for being out of the hospital = feeling good were not realistic.  I was told what to expect, so it's my own fault.  I couldn't wait to feel 'normal' again, but that didn't happen during this time.  It took weeks for the water pills to work and during that time I was constantly up and down going to the bathroom (which made me dizzy).  The mucositis was particularly painful and while it's in play, it's hard to think about anything else.  Chemo messes with your appetite and taste buds.  Nothing tasted good to me, and some things,like carbs (especially refined sugar and flour-based foods) tasted terrible.  I wish this had lasted forever - this category of foods is my downfall!  At any rate, during this time I didn't have much of an appetite and ate very little.

Overall the first couple of months post-transplant were tough for me, but there was some slight improvement I could feel each week, which was heartening.  I still slept in a reclining chair, but I was beginning to really look forward to sleeping in a bed again.

The worst thing about this time actually took place in the first two weeks out of the hospital.  I felt a lump on the back of my calf, just below the knee, and had to go in for biopsy.  Because lymphoma is hard to diagnose, the sample had to make it's way through several different pathology tests.  Luckily it came back negative.  We don't know what the mass was - it wasn't removed, but did go away over time - but I suspect it was a residual lymphoma mass that was still being worked on by the chemo in my system.  The other thing that is particularly difficult during this time is the 'fuzzy brain' syndrome caused by the chemo.  It's particularly hard for someone like me, a writer, when a word you're looking for is just out of reach, or when you stop in the middle of a sentence because you can't remember what your point was.  Once I had to ask my mother what that ocean was called that was not the Pacific.  Pretty bad.  But it's a common phenomenon and does go away eventually.

A couple of other noticable problems besides bad tastes and fuzzy-brain; dry mouth and general aches and pains along with low, low energy.  The dry mouth was particularly bad - I had to keep a half-gallon jug of water at my side and sip on it ALL THE TIME.  When I didn't, my tongue was sticking to my teeth!  Of course that made it almost impossible to eat anything like bread, but luckily that didn't taste good to me then anyway.  In case I forget to fill this in going forward, the dry-mouth issue persisted pretty strongly for almost a year post-transplant.  It's moderating a bit now, almost a year and a half after transplant, but it's still there to a degree.