Rage Against the Machine

Jenny here.

It's been a hard week for Wil emotionally and physically.  It's a blessing that I am starting to gain a grip on things more, but still so painful to see that he is struggling. 

The steroids have really changed his usually sunny disposition.  Yesterday he said "I'm a horrible terrible person" because he had been so agitated the night before that they had to give him a sedative.  The nurse manager stopped by yesterday to check in with me.  She said all the nurses have hated to see him struggle this week.  He started here a happy, easy going guy, hopeful for recovery...with all the steroids and the liver causing such great fatigue, he can be combative, demanding, and never smiles.  Being on fall risk was the last of his normal life to go.  Now he shakes so much at times my heart skips a beat.  Having grown up seeing my dad have seizures, he takes my breath away. Wil likes constants.  Predicability, structure, plans.  Every day has unknowns right now, so even the smallest change ruffles his feathers.

I've skipped out on work for 3 days to be here, helping him shower and eat and try to keep his head up.  As I was showering him the other day he looked at me and said "You're teaching me how to take care of you if you ever need it." The caregiver club includes often feeling like you are muddling through, not doing complete justice to any part of your life, filled with impossible choices, small successes, joy, frustration.   But in concrete moments like that, everything seems so clear.  I leave and go home at night for the dogs, but also for my own rest and sanity.  I've moved past *some* guilt in leaving because I see how much more charged up I am after I've been gone and slept well for a few hours.  Guilt aside, it's still not easy to have your loved one begging and pleading for you to stay every time you leave.  He sleeps when I am here because he doesn't sleep well when I am not here. When I wake up I send a text asking him if he's awake.  The response I get from him is always the same:  "on your way? please say yes." I said yes 14 years ago, I'm not about to start saying no now :) 

Everything else we will figure out as it comes.

At some point I will get those thank you's out to all of you have been so kind.  I'm so grateful for the encouraging words, the gifts, the time spent.  I'm running around like crazy, but I'm ok.  My bills are paid this month by unexpected generosity.  Our dogs are taken care of and loved on even in my absence.  I was trying to figure out how I can express what those acts of kindness have done.  Wil is my world.  And the help we have received have literally given me hours with Wil, allowed me to miss some work hours, allowed me to stop by the grocery store on my way home from work without rushing home and cook myself a meal, or allowed me to pick something up on the way to the hospital, or given me an extra hour of sleep or...allowed me to breathe.  It has meant the world to me.

Updates:
Although his liver has not been on the decline, the numbers have plateaued for the last week and not been better.  The ultrasound showed good function and blood flow, but they are doing a liver biopsy tomorrow just to be on the safe side.  They still think he is dealing with a liver injury as a result of the chemo, but we will know more Tuesday. 

This morning he took his last dose of steroids!  He had been scheduled to have 4 more days, but after talking to the doctor and Wil getting upset and yelling "no, no more steroids," they all agreed it would be ok to stop early so he will not be as miserable.  His doctor said that the shaking, irritability, anxiety, insomnia, and blood sugar (he has had to be on insulin during steroids) should all see a dramatic improvement over the next 2 days.  The weakness, however, will take weeks to reverse.  He has been cooperating and pushing himself in OT/PT here and made it all the way down to the other window of the unit to look at the sun today.

The discharge plan now is him leaving BMT unit this weekend or Monday and going to a skilled nursing home for rehab.  He did not meet requirements for a hospital rehab floor but because he is not yet doing most activities of daily living (ADL's) independently, he needs some time to regain strength so he is safe at home.  After that he will be home until his liver has healed enough to continue chemo, hopefully in time to ring in the new year with me.