Monday, August 18, 2014

Social Media in Action!

We have an official diagnosis on my dad.  It's an extremely rare type of cancer, described as "vicious."  Only the top facilities can handle it, like MD Anderson in Houston, Texas. That's 1400 miles away, but it's one of the top three facilities in the country.

Saying he needs to be seen there is easier than getting him to be seen, though.  The oncologist here told him he needs to be seen before the end of the month.  It's that aggressive.  My mom called them, and they said, "Send your records here and we'll look at them in about three weeks."  That's not an appointment in three weeks; that's we'll look at it in three weeks.

That's just not good enough.

So, I did what I know how to do.  I turned to technology to help us.  On Facebook, I made a post saying that I don't usually ask for help, but I'm desperate.  I asked if anyone knew anyone at MD Anderson who could help us cut through this red tape?  Give us advice?  Something?

Within 15 minutes, I was talking to a nurse who actually works on the unit where he needs treatment.

Her advice was drastic, but made sense.  We made a plan.

In the meantime, my dad's doctor was trying to get through to the head of that unit.  A couple of days' worth of phone calls and faxes, and his complete case was in the hands of the doctor who needed to see it.  All that was left to do was wait to see if he'd take the case and when Dad could be seen.

The waiting is over!  Dad will be seen next week.  We breathe a sign of relief…for now.

We don't know what the treatment will be, but the conversations with that nurse have assured us that this is indeed where he needs to be, and that he'll be among people who truly care about his well-being.

This has been a grueling experience already.  The waiting is hard.  There are places that I can't let my mind go yet.  We hold on to every bit of hope that comes along.

What worries me is that I'm the one everyone leans on.  My mom falls to pieces, she calls me because my sister is in the throes of her own drama about this.  I'm there for my kids, too.  I don't resent any of that.  But I wish someone was here for me.

Daughter is about to go to school again, and I'll be alone.  When the world gets quiet, too quiet, where do I turn?  I have my Love, but he is half a globe away from me.  We have our limitations for now.  I know he'd change it if he could, but we have to wait for that.

I'm a little afraid of the silence.


~ellen~ said...

Oh Blogget, how scary. Good for you for stepping up and making things happen, he's lucky to have such a smart daughter. How great glad he has an appointment with the best in the country, I hope you get good news from them.

Take care of yourself, and try not to let the scary thoughts win.

Blogget Jones said...

Thank you, Ellen! It's a scary time, for sure. I'm hoping for more news later this week, and counting on it being optimistic news! I'm fighting those scary thoughts!


e jerry said...

Is this thing on?