Short Update

An update is in order, but this will be a short one.  I've spent the last two weekends traveling and I'm exhausted. I know -  you don't feel one bit sorry for me.  That's okay.  But, as much as I enjoyed the amazing weekend with my sorority sisters at Coronado Island and the time we spent in New Jersey/NYC celebrating my niece's wedding, my sweet Jack was having a very rough time back home. The stress of being away from him when he is hurting cancels out the fun.  Not that I regret taking the time away.  It's just not as fun and exciting as you might think.

It wasn't that long ago when I could say that Jack was having good days and bad days.  Now, it's more like Jack is having good times and bad times in a given day.  Jack isn't having any "good" days anymore.  We've now added continuous oxygen and Ativan to the mix.  I still struggle with wanting to know why?  The one thing Jack's doctor assured me of when we decided to transition him to hospice was that I could still pursue testing and treatment if I wanted to.  At this point, I need to know why his pain is increasing instead of staying the status quo.  Even if we choose to do nothing once we have the information, I still need information. I'm a detailed oriented, need to know kind of person.  Based on Jack's symptoms, I would like to have some blood work done, at a minimum.  It's possible that we won't know any more than we know right now after doing the tests.  But, I'd at least feel better knowing that we aren't dealing with something obvious and treatable that is causing Jack to be so uncomfortable.  I'm hoping to hear back from Jack's doctor tomorrow.  As much as there are upsides to being on hospice, I'm also discovering that access to certain things is subject to hurdles that I didn't have to deal with in the past. It's very frustrating and makes life more difficult at times.  And the last thing I need is for life to be more difficult right now.

I could go on, but being negative just creates negative energy which saps what little bit of positive (and productive) energy I have left.  At the end of the day, all of the people in Jack's life care about him and want to help.  I'm overly tired, sensitive and emotional.  All we can do is press on.  One day at a time.

I want to share pictures of my very special weekend with my very special friends for those who aren't on Facebook, but I'm too tired tonight.  I'll try and post pictures tomorrow, but in the meantime, here is my favorite picture of the weekend - this pretty much sums it up.