A Welcome Respite

It's hard to describe what Mom has been feeling the last two weeks.  Probably none of us really understand. We know she's fatigued. We know she hurts. We know painkillers aren't effective enough for some of the procedures she has to endure.

We know the doctors have said things that sound like "This is to be expected" or "We'll see this through."  Things that don't bring a lot of hope to our mother, who has always been filled with hope, or to a family who desperately wants to see progress and waits, always, for a new tomorrow with bright energy and conversation.

The small lights of happiness we've felt the last 2 weeks were appreciated, but we knew something significant was wrong. An action plan was missing. And on Friday, the light of lights was lit again. Mom got to see Dr. Maher of the Simmons Comprehensive Cancer Center at UT Southwestern in Dallas, and again, the fire of hope burns!

Friday, Mom's scans were read and explained to our family as an unexpected and terrific response to the Avastin and chemotherapy she's been taking.  Her cyst has shrunk significantly and there are no new ones taking its place. RELIEF!  PRAISE!  What a great thing, Mom has worked so hard this past several months, and she is accomplishing amazing things.

But still, then, why is she bereft of all energy?  Why cannot she keep her eyes open for more than ten minutes?  She can't talk more than a scarred whisper.  The team of UT-SW doctors attribute this to an infection, and they're working to identify of what, but they do not believe this is due to any brain abnormality.

So after Mom's appointment Friday late morning, she had lunch with our family in the food court, and then was transported (via her very own car, first time sitting in it since February 10th...since the wheelchair van wasn't scheduled back until later that afternoon) to a hospital room on the UT-SW campus.  I wish I had been there to see it, it must have been a moment of wonder, when Mom touched and saw and felt her beautifully clean red Cadillac.  She and Dad have had that car for a few years, but I swear it has never lost the "new car" smell. And for someone who hasn't been in a nice car for months, imagine what a sensory experience that was!

None of us could have anticipated what sensory delights were to come, though.  And I'm seriously not exaggerating here.

What would you think if you were told you room included a kitchenette, a dining table, a few fold out chair-beds, a rollaway, a very large window view over the campus, a granite-like (or real?) counter and fancy faucet bathroom? A room service menu that will bring you on-demand food?  A television with integrated DVD?  Free wifi?  Maybe an upgraded room, maybe a suite, at a vacation destination hotel? Maybe a room on the oncology floor...

It's true. Mom's room is the best of the best. The nurses and techs on duty seem to be right on their toes. Sara said one who came in several times for tests was so stealthily silent that he was able to perform his duties without even waking mom once.  The door doesn't squeak, and there is space enough so the girls can talk very quietly and Mom doesn't even hear a peep.  Truly this is a room that Mom deserves, every sterile square inch of it.

My original though of "Wow!" was quickly brought back down to realistic sadness when Sara confirmed this is the type of room they save for the sickest patients, and yes, Mom is in that category. With this pending-location infection, with a wound vac, with still severe fatigue and word-salad language, Mom is at one of her lowest points of her illness.  So there's no cause to throw a party and invite all her much loved friends and extended family into the suite.  There is much reason to be thoughtful in prayer, be considerate in messages, cards, letters.  Every personal interaction now is an effort for Mom.  All 8 of us in her suite today were too much, so 5 of us left sadly but fairly quickly when we realized it had to be overwhelming to her.

Little by little, Mom will be able to enjoy the background noise, the grandchildren scuffle and chatter, the pictures and stories and drawings.  The accidental drop of a fruit plate.  The music of an iPad with headphones not completely plugged in. The crackle of a Barnes and Noble bag filled with One Direction magazines and books for our favorite pre-teen.  The crunch of NC salted peanuts.   For now, what she really cherishes is a warm damp washcloth on her face, a pillow cooled by an effective air conditioner, and an occasional sip of iced tea.

And the love of family and friends, and the care which she is receiving in this new place, which, finally, seems  to be a place that will treat her with the goodness and effectiveness she really deserves.

Jennifer enjoying the new suite.

On-demand room service with tempting selections... even a different made-from-scratch fruit cobbler every day. (Mmm!)

Our new kitchenette.