Monday, July 8, 2013

Since Vacation

I figured, before I continue with posts about our vacation, I would give you an update on how Melissa is doing.  As many with Cancer can tell you, the only thing to expect is the unexpected.  For the past few weeks she has really struggled with eating, activity, and has just not felt good.  Despite several visits to the doctor, very little has worked in the past few weeks to make her feel much better.  I talked to her doctors on Friday to ensure they actually knew how much she was suffering...and I told them that this is unacceptable.  The reassured me they would do anything in their power to help her.  They also mentioned that she shared little of this with them.  After talking to the doctors Friday, though, I am convinced that she should not be feeling this bad.  So over the weekend I talked with Melissa some about how she is feeling, what medications is supposed to be taking and which ones she actually is taking...and though the two are not lining up as they should, I do not think the cause of these issues is due to the medications directly.  So today, the doctors want to do another MRI.  They also suggested, in a very nice way, that I become more of a caretaker.  They suggested I need to administer her medications, return to tracking things in a journal, and may need to spend more time at home.  Time...I would love to spend more time at home...I would love to manage every aspect of her be the caregiver she deserves, but, how do I manage to do this while working?  I suppose, depending on the next month or so, I will have to do some soul searching...figure out a way or a system.  

Good healthcare should include setting you up for success...teaching patients how to cope, teaching caregivers how to provide good care, and helping them through the transition that happens when you go from "normal" life to "ah shit, Cancer" life.  There is a hell of a lot more people need to know, besides what kind of Cancer they have and what treatments they need.  I know that from day one, that is where our doctors failed us.  It would have been nice to at least had 1 person say, "Ok, here is the real deal..." and just lay all the BS out on a plate for us to at least look at before we have to eat it.

As you can tell, I have been quite frustrated and pre-occupied the past few weeks, even during vacation.  Not sure where this story goes next, but, one thing is for goes.

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