Christmas Eve Dinner 2012

Day 83, Happy Boxing Day.  Apparently not a day devoted to boxing up Christmas junk... We had a fantastic Christmas with lots of family, friends, food and wine; a perfectly welcome distraction.  The Doctors have been reducing Faye's steroid dosage a little each week as they ease her off altogether and she has just two more weeks to go.  These last few days she is finally experiencing some relief from some of the many side effects.  Faye took Christmas Day off from school work but she's back at it today, spending many hours on her own and with both Bev and Karl. Amazing.  Not only is she working through nausea, pain, discomfort, and fatigue but now also through the distractions of the Holidays.  Though it was a good year in some ways I'm not at all sorry to put 2012 behind us and look forward to happier and healthier years ahead.  Happy and healthy 2013 to all!  ~Lolly

Day 67 and Faye is feeling so much better.  We arrived home Wednesday to a clean and cozy home all decorated for Christmas.  I can't brag enough about how much Steve, Zoe and Lydia have contributed and supported Faye through this entire ordeal.   

Faye had pulmonary function tests late Friday afternoon and more CT scans today.  I just hope she will not have to be on the steroids for as long as they first prescribed (5 weeks!).  The absolute best news of the week is that Faye will not have additional chemo!  Apparently there is no clinical confirmation that additional chemo, even the antibody, is effective in the absence of tumor.  So big relief on that score. 

And finally on the academic front.  With all of the additional hospital activities Faye has fallen further behind on school work (an already overwhelming load).  The great news is that our dear friend Bev is now Faye's home/hospital tutor!  With the ongoing help of Karl on AP Stats Bev has spent and will be spending countless hours with Faye and on Faye's behalf advocating with Creek and making progress on the work load.  Bev is absolutely amazing.  Together they've mapped out a plan (reasonable though very ambitious) to squeeze in enough credits for Faye to graduate on time with her class.  Faye is encouraged and, though exhausted, she has dug in; tackling her daily goals with determination at all hours and even through the weekend.  Amazing girl.  ~Lolly

Day 62. 

It's official; we're finally breakin' out of the Hospital today woo hoo!  It feels like an eternity but in real time it was not even a week.  [Here comes one of the longest run-on sentences you'll ever not want to read...]  Between the procedures, the power outage, the 'flight for life' helicopters seemingly swooping into our room at all hours, the shock and fear of stumbling into the hallway to find multiple rooms taped and sealed in heavy plastics (like ET or Dexter - I jumped to the obvious 'contagion' conclusion only to discover it is due to water leaking through the ceilings), Faye's oxygen monitor alarm beeping at all hours (alarming until you realize it is because they are continually and gradually reducing oxygen flow to encourage Faye to breathe on her own) and  -  most of all   -  the stress of why we're in the Hospital in the first place...  I'm simply a wreck.  I don't know how Faye holds up so well but I do know we both have the mightiest desire to be home.

Faye's scan on Monday was not as encouraging as her clinical results.  The Doctors were not discouraged at all, but I misunderstood their comments esp about consulting a surgeon and briefly went into a bit of a tailspin. Faye continues to improve though, and today the scans finally show it!  I can't come close to expressing the relief I feel although we are cautioned that we are not entirely in the clear yet.

Faye will continue high doses of steroids and will have more scans on Friday; more milestones to reach before we consider restarting radiation. Thank you to everyone for all of the kind thoughts, messages and prayers they mean so much!  ~Lolly

During rounds this morning the Doctors were not encouraged; Faye had continued to desaturate during the night last night and was still requiring high levels of oxygen.  But around noon today we started turning a significant corner; Faye's breathing is increasingly easier and the nurses have been successfully reducing her oxygen levels over the last 3 to 4 hours without desaturating.  We're not quite in the clear but this is so very encouraging. Faye is scheduled for an x-ray in the morning and we're crossing fingers and toes for further confirmation that we're on the road to recovery; if yes we might even be discharged as early as Wednesday!  ~L

Wow what a long day it was yesterday. Faye and Steve were here at 9am for a series of pre-bronchoscopy tests and procedures.  I left work at 11 in time to join them for the Doctor's consult after which we headed down to the surgical wing.  All went well and by 2:30 we were in the recovery room - a special high compression chamber that continually forces air from the ceiling downward and outward to ensure that no viruses or airborne bacteria would enter the room.  It was very (very) loud and very (very) bright; a combination that, if you're prone, will immediately cause a severe headache. Around 3 they let us know that Faye's room on the 7th floor would not be available for a 'couple more hours'.  Fortunately they also scrambled us around so that we could move to a BMT pre-op room that, though not comfortable, was infinitely more comfortable than the compression room. Some time around 4pm the power went out.  In my memory I can't recall ever experiencing a more shocking transition to complete silence and absolute blackness.  Faye and I soon found our voices and began to exclaim wtf phrases at the same time that a huge groaning and shaking took place; some of the lights came on as the building switched to generator power.  Apparently three power grids had gone out across the city but I've still not heard confirmation in the media.  In the mean time nurses and maintenance personnel rushed around checking on equipment, plugging vital pieces into the 'red' sockets, all non-emergency surgeries were put on hold, etc.  I began to wonder what was happening in the lab where they were supposed to be performing tests on all of the tissue and samples they had gathered, particularly Faye's.

So around 8pm they finally moved us up to room 712 and a Doctor came by with some preliminary results.  So far all results are negative for viral, fungal and bacterial infections.  So by process of elimination we will -for now- assume (and hope -given the alternatives) that the inflammation and spots in Faye's lungs are a reaction to the BCNU/high dose chemo something called 'pneumonitis'.  Faye started IV steroids this morning and now we wait, hope and pray for a rapid response.  ~Lolly