Loss

After my MRI instead of heading home, we drove in the opposite direction. Chris had a nagging sense that he needed to see his father.  It was a good but hard visit.  Good in that we chatted, told stories, shared my good news, showed him silly pictures of the dogs and boys on the cell phone.  Hard because Mike wasn't doing well and wanted to discuss what needed to happen when he died.

September 9th, 2012 in the early morning hours that still seem like night, my father-in-law passed.  He'd been in poor health for a number of years - heart attacks, yes plural, congestive heart failure as a result, a stroke, diabetes and many infections.  Our loss wasn't unexpected.  Still he'd survived countless operations doctors warned he wouldn't and so despite logic the family almost came to believe he'd continue to defy the odds, almost.

Reaction to my good MRI is muted, we're pleased but can't muster enthusiasm.  When something cool or funny or maddening happens, the thought - hey I need to call Dad, share this - still runs through Chris' head - then he remembers he can't.

That finality is hard.

Move forward at last

It's always amazing to look back and have the impression that time flew.  Twenty two months have passed since my last surgery, this is the point, this is the MRI that for the last six years has brought all progress to a halt.  The hope was that the radiation succeeded in retarding the tumor, making it not grow.  The wait to know if I can continue on or not is over.

My MRI findings were stable.  Post-surgical changes are again seen in the sellar supraseller region.  (scar tissue from the surgeries and radiation)  The mass lesion (the tumor) is stable, no evidence of progression.

My blood work was also stable.  No new function loss and both hormones I take replacement medication for tested in normal ranges, so no changes in dosage, no adjusting!

I cannot express how relieved I am, Chris and the boys are.  I still have to test again in six months because my tumor was so aggressive but if that one is stable then I can go a full year between them.

Bottom line for the first time in six long years my pituitary tumor isn't growing!

Refill mess up

GH is a specialty drug so when my pharmacy's supplier messed up and didn't send it on time, I couldn't just go to another pharmacy and pick it up.  I had to go without for four days.  Doesn't sound like a long time but  any disruption messes me up.  Why?  Just me, just how my body works with it, just is.  Misery descended for  the next few weeks.  The pharmacy promised this will not happen again.

Levels checked

A quick trip up to OHSU to check on my GH and T4 level.

Growth hormone level is fine, no changes.

T4 finally increased unfortunately it increased too much so my dosage is being decreased to the level between what I'm on now and what I was on in March.  So not looking forward to the adjustment period.

GH & Thyroid increase

My dear Mother has been on thyroid replacement for decades.  She's never had a reaction, any trouble at all, starting medication or changing dosage.  I tease her that she sucked up all my tolerances.

Unlike my mom when I start thyroid or change thyroid dosage I feel like I have a slight flu, excessively tired, achy, headaches, basically feel like crud for weeks to a month.  Once I adjust concentration improves, its easier to think and energy level increases a little.  Definitely worth it but I hate the process
 
GH is worse.  When I start it,  I have horrible daily headaches for a month or more.  It's a miserable time.  Slowly I adjust, it starts to help.  Over time fatigue lessens a little, moods level and the odd feeling of feeling withdrawn from the world fades.  The first couple weeks there were times I questioned if the misery was worth it.  Now though the pain in my head is gone, Chris assures me he sees some improvement so I'm willing to go on.

March 2012 testing result

Once again I had an unremarkable MRI.  Two sentences highlight the important findings.  The pituitary lesion, compatible with pituitary adenoma is unchanged.   The last line of the report is the same as last time, stable left lateral ventricle atrial lesion likely representing intraventricular meningioma.  Which means both tumors remain as they were.  That's what was expected.  It's good news.

I also had blood work to check on my pituitary and I haven't lost any further function.

My TSH was on the low end and I'm still experiencing fatigue so my thyroid replacement is being increased.

Dr. Fuss has approved my restarting growth hormone replacement.  I'll have to return in July to check my blood levels on just the GH and thyroid to monitor the changes, see if the medication dosage needs adjustments.