Monday, January 19, 2015

Suddenly Cellcept

Thankfully we were all home today.  Kids making fun and messes, music and laughter. Mike is home from work and plenty of down time.  As he just now left to pick up our nanny for the week, I will recount the events.

I am talking more these days, and able to flood into full dissertations to the children, rationalizing and explaining everything I can get my thoughts on.  Then blurting them out in some overbearing way.  Not quite the parent I had hoped to be.  I was convicted when I came across this page from a favorite parenting book, How to Talk so your Children will Listen & Listen so your Children will Talk by Adele Faber and Elaine Mazlish.  Page 12 & 13.  Basically, I was the mom on page 12 today and one day I want to be the mom on page 13.

Instead of "Questions and Advice,"

acknowledge with a word, "Ohh, mmmmm, I see . . ."images

After that sad little jaunt, I decided to make stuffed cabbage today.  Clean and healthy eating, cancer avoiding cabbage rolled along the lines of a delicious grape leaf recipe. After tending to the entertainment cabinet in the playroom, organizing and dusting the wires, listening to excerpts from Civil War the Musical and Little Shop of Horrors, I made my way to the kitchen while Mike and the kids tackled the wooden marble run.  They were making roller coasters for the little spheres to ride on.  Once my request for "Suddenly Seymore" came on Spotify, Mike brought the Bose speaker into the kitchen for me to hear as I was cooking. Steaming cabbage leaves and rolling them up, I then wanted to listen to "Astonishing" from Little Women. I slowly started muttering a few lines along with Sutton Foster, and just joined her in the belt, the kind of controlled yelling that many of current broadway singers accomplish. Well wouldn't you know, I made it through. Not quite the finale, but definitely through the bridge and some of the parts that I haven't sung in a very long time.  It was very exciting for me. Rinsing my hands of the meat and getting the rice out of my nails, the warm water welcomed me back into singing, a huge part of my life.

I went out for a bit, going to a few stores before the gym.  Since I am on high dose prednisone,  for about 3 months, I have scheduled the gym for multiple times a week, and trying to stay ahead of the weight gain and weakness. During my errands, my doctor's nurse called me back.  We have sought counsel from many many people, both medical, natural, family, friends, praying for wisdom, and 6 rounds of teaching hospital physicians over 2 hospital stays since last October.  I basically had to tell the nurse, I choose Dr. Ahmed, and ask, when do I begin Cellcept?  As I moved through the still-over-priced-going-out-of-business furniture store, she started to discuss more in depth some of the protocols.  Timing of blood tests, supplements to take, etc. I needed to wait for another call of when to start the Cellcept. I made it to the gym, and just as my warm-up was complete, I got another call that the perscription was called in and I begin today.

I knew that. I figured I begin today.  I also know it is the right decision.  Even so, I still went through a mental gymnastics competition to actually buy the pills, muddle my way through the warnings and side effects, and actually set the timer on when to begin.  On my 2nd trip to the pharmacy, I bought the prescription and a peace lily. Thankfully David was dismantling the sun glass rack and Naomi was trying to help control him without bashing the kid version of a shopping cart into the display counter, so I was totally distracted in the moment of purchasing and just bought the stuff without over thinking. 

Perfect play-in to Idina's first solo, "What If?"  in If/Then, A New Musical. Over thinking decisions, hindsight. Not right but a very real wrestle.

The drama didn't end as I read through the package inserts throughout the evening and basically started to despair at the decision that I know is right.  Thank goodness for Mike, drawing me into the idea that I can speak now and I'm starting to get my life back.  I sang today, I am no longer just walking into a room  wondering if I can swallow or talk, or make it through the afternoon.  He reminded me of the benefits of medicine, that the risk of not taking this far outweighs the risk of taking it, and he's not just going to sit by and let "your humanity go down without a fight. You've got a lot of life left to live, and we are going to fight for you."  Spoken like a true angel husband.  Suddenly, my Seymore drew me out of the heavy thought, and back into the hope that this can help.