December 11, 2015: What’s fit to print…

Journal entry by Felicia Friesema

According to the surgery team, the biopsy went satisfactorily.  They were able to get the tissue that they needed and they putting a rush on that pathology so that we’ll know what some of our next steps will be.  In the meantime the symptoms continue to progress at an uncomfortable rate.  He gets really frustrated with the nurses who ask so many questions, but he will work with me to try to find the words that say to them what he needs.  In some of his better moments he still tries to crack a joke or two to make me smile.  This is hard when words elude you from moment to moment, but even the effort is a good thing.  And ultimately I find the meaning.

The hospital is completely full. We were promised a nice private room that would have a bed for me so I can sleep next to him.  But that never materialized and we ended up spending the evening in the surgery recovery room.  It’s about as active and distracting as an ICU but with less urgency.  Normally they don’t allow people to stay with patients overnight but they made an exception for me.

I will say his care and exceptional and that everyone here has been compassionate and understanding.  I’m grateful for all the doctors and nurses here at UCLA and all their hard work in helping us make this enormously difficult task a little bit easier.

I think between the two of us we’re operating on about two hours of sleep.

He’s frustrated. He’s confused. He sometimes knows where he is and sometimes he doesn’t.  The cell signal in the hospital is slim to non-existent most of the time. So when I am with him I can’t say or do much online. He sleeping right now so I’m currently in a hallway full of bright lights and loud hospital chatter and running people.  Lots of doctors running everywhere.

At about 1 AM the surgeon ordered another MRI for Steve.  This was to determine whether or not he would be a good fit for a procedure that would help drain some of the fluid that’s building up in his brain.  I don’t know much about the procedure yet as I haven’t had a chance to talk to the surgeon directly.  But it sounds more invasive than the biopsy was.

Right now we’re hoping after a few people are discharged from hospital this morning we will be able to move into a private room.

The picture I’m attaching to this post was taken before he was prepped for surgery.  I had asked him to smile and give the thumbs up so I could send a picture to Larry so he could see he was doing well.  He did this instead and winked at me afterwards.

Can you see the strength and bravery in that small act of humor?  Even in his worst moments, amidst terrible things, he is thinking of others around him.  I’m so humbled by this.  He is always my hero.

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