August 27 – “The Continuing Saga”

Sigh.  I know.  Terrible way to start off the morning – with a sigh.  But I did have yet another doctor’s appointment yesterday.  This one was with the rheumatologist, and I had hoped to get rid of the medication that has been giving me that chemo brain effect, causing me to forget my train of thought and drift into … something.  Very strange feeling, and kind of frightening, actually. 

The results of the visit?  Mixed reviews.  He didn’t take me off of the medication.  See the “problem” is … it works.  The RA pain is significantly decreased.  It’s just those side effects.  He first said we could switch to a shot version of the same med, and that would have been fine.  Something about needing a lower dose because it goes to the bloodstream quicker with less chemo brain effect and stays out of the gastrointestinal tract altogether so the stomach problems are less.  I was all ready for that until some other options arose. 

Chris keeps a detailed list of everything we have already tried in the past.  Good thing she had it with her.  She informed him of three other medications we tried briefly that worked fine, but were rejected as out of hand by the insurance company.  Two were shots.  The third, though, was a pill that really captured his attention.  Apparently he really likes the prospects of this one in my case.  It’s called xeljanz.  But the insurance company has already rejected it (they called it in from the office).  Well, not rejected, exactly.  They just said the cost was $3,092.89.  That works out to $51.55 per 5 mg pill.  Ouch.  But the office anticipated that and has already filled out the paperwork to cut through all the insurance red tape and get the medication directly from the company, at least for a year.  In the meantime I cut back a bit on the chemo brain drug.

The helpful part of the visit, though, came when I told him about the pending back surgery.  He said I would have to be completely off of all RA medications for a week before surgery and at least a week after surgery.  In his words: “So you’ll probably feel terrible.”  Thanks, Doc.  He agrees that I should have the myelogram (Again, thanks, Doc) to get specific results before proceeding with anything.  He really doesn’t like the idea of fusion because of its effects on the surrounding disk areas.  He was pretty much OK with the whole thing, though, when we told him that the surgeon specifically said he wasn’t talking about fusion … yet.  His final words of advice were his personal three signs for going ahead with surgery:

1.      It hurts(!) to the extent that it affects your quality of life.

2.      The neurological symptoms and the MRI/myelogram/physical exam results match up.

3.      There is obvious weakness and loss of function directly related to the problem.

Now those were very specific, very helpful things to think about before agreeing to this surgery.  Of course there is also to consider the fact that the issue is degenerative – it won’t get any better and will get worse.  This doc’s take on that?  When will it get worse?  Tomorrow?  In five years?  Can you live with it unto it does get worse?  My question on the whole thing?  What does “get worse” look like?  After all, I’m the one who has to do the “living with it.”  Not to mention Chris living with me living with it.  Ah … decisions, decisions.  Do you now understand my sigh?  Good.  So … Sigh.

1 Thessalonians 5:16-18 says, “Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus.”

Father, thank you for the miracles of modern medicine.  It is amazing how many different approaches there to attacking the same problem.  I’m still making my first approach calling you.  Amen.