Tuesday, November 10, 2015

Stuck..and other news

Sometimes, I feel like we are stuck.  Sometimes, I can't imagine that anything is ever going to be different than it is today.  Sometimes, I think I have forgotten what life use to be like...before the hastening of trials began.  Sometimes, I'm afraid to think of what is coming next. Sometimes, I just feel like we are stuck.

In Salmonella news...I think I can say that Spencer is better in some ways!  That's a direct result of prayer.  I keep hearing that Infectious Disease Docs voice in my head..."brace for the worst"  This hasn't felt like the worst thing we've been through.  I can't help but know that this is a direct result of prayer.  We've had episodes of strep throat much harder than this...well, maybe not exactly.

Today was the first day in 8 days that there hasn't been any blood escaping from his body!  That's pretty much the extent of the good news.  But that is great!  Everything else is pretty much the same.  He is still having a lot of joint pain, headaches, and cramping but only when he eats...so, he gets around that by not really eating much which is not a good thing.

Tomorrow will be our first day without the antibiotics so we will be watching closely to see what his immune system does on it's own.  I'm anxious to get a blood count too.  I am hoping that I hear from our GI doc in Boise for a little direction and I think I will run him in to our family doc just because I need some reassurance and company from someone with a PhD.

Decisions...Spencer has been waffling all day about what he needs to do with his life.  Boy, I'm not sure if I feel more anxious for him on the virus and bacteria he is fighting or the life decisions he has to make.  He told me late this afternoon that he wants to move home.  He wants to try to get through the last three weeks of class and then call it done for now.  I just don't know how I feel about that.  Of course I would love to have him close but that isn't much a plan.  He needs a purpose in his life so he needs to massage that thought just a little longer.  I told him the time to make a decision like that is not when you aren't even getting enough calories to feed your organs.  It has been an emotionally charged day and it almost ended with a long talk about dying which is never fun! I promise.

An apology...  I know that there are probably a hundred people reading this who know the doctor that I have had my problems with. And probably the PA I took my anger out on. For all I know, they are reading this, their families are reading this.  I live in a small town and everyone is related to everyone but me!

 I want to apologize for anyone I have offended as I have expressed my frustration here.  These providers are very well established and highly regarded in the community and in their practice.   They are cancer doctors.  I realized today we are well beyond the need for a cancer doctor.  Perhaps I was asking too much of them.  He became our primary care doctor, he had to venture way out beyond the realm of cancer and into the arena of pulmonary AVM's, Fibrosis, telomere disorders.  At one point, after our DC diagnosis, I asked him if he was still comfortable taking care of the kids since things were certainly becoming more complicated.  I didn't mean to offend but maybe I did.  I'm not really sure what happened but I know the past year has been different.  I have tried so hard to be a good patient and not expect too much of him. The experience this past week was not favorable for either of us.  I really wish it hadn't of happened the way it did.  I was upset and the lack of communication and confusion and the fact that I never had anyone who knew our situation to talk to, ask questions of and feel supported was too much on top of everything else.  I felt abandoned and wasn't very good at communicating that without getting emotional.  I should have handled it with a little more grace.  We both made mistakes.  I still think that he is a kind, caring man for his cancer patients and really does have a cerebral way of thinking through things.

Okay...well.  It's been a day.  I'm tired... Again!  Ha ha...Life goes on!  If you had of asked me last Wednesday where we would be this week...I would not have guessed at home, with all three of my kids down in their room laughing and making the best of a very hard situation!  So...it's all good!

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1 comment:

  1. As, Kath. You're more graceful than you think. :)

    ReplyDelete