Get Away

Clearly, something was up here.  Half (or more) of the parking lot is blocked off.  I couldn't get to the hotel entrance and instead, had to 'self-park' (the horror) [that's a joke - sort of] and schlep my own bags to the registration desk.  Some big fight event happening here tonight.  Likely to be a little noisy.  No wonder I was able to get a room here - I've never been able to stay here before though I've tried many times.  It books up quickly 'cuz it's a relatively small hotel.

I am pleased to report, however, that the room is very nice.  It's got to be three to five times larger than our hotels in Europe.  It feels like a suite, almost.  Plenty of room to spread out and get comfy.

I gambled my free play already (plus a little of my money).  Enjoyed a nice lunch at the buffet.  Now I'm surfing the web and writing a blog post - update overdue.

The visit to H.'s oncologist on Thursday went fine - though I don't think the news was stellar.  The tumor didn't shrink from the scan in early May to the scan in early June.  That's troublesome, obviously, 'cuz we were hoping two more rounds of chemo in between would have had some effect.  It didn't.  We saw pictures of the clot - and both J. and I felt both proud and frustrated that the clot is the only 'obvious' thing we can make out on the scan disc.  (They give us a copy on a DVD.  Like a souvenir).  It is large and more scary than I imagined - 'cuz it is really taking up quite a bit of 'width' of the vein and there's not much room for blood to go around.  It is getting around.  But wow.  It's really something.  The doctor pointed out the tumor - but to us, it looks like most of the rest of what we see - it's gray.  It's clear there's 'something' there but the scan has his entire body 'gray' pretty much - so we're not sure we get it.

The one other 'clear' thing is a view that is looking down from the top of his head down his body.  His trachea should be the black hole in the center of his neck.  It isn't.  His trachea is moved over quite a bit.

It was decided that the best approach at this point is two more rounds of chemo.  Partly because radiation at this point isn't a great thing to do with the clot where it is and as large as it is.  Lovenox will keep working on it and hopefully decrease it in size considerably in the next few weeks.  Chemo will also (hopefully) reduce the tumor more.  Then radiation in mid-to-late July, we hope.  Radiation is daily - so that's going to be hard on H. to have to plan for 3 hours each day to be booked getting to/from.  Not that great for J., either.  So glad he is home, though - I don't know what we'd be doing if we were both working full time.

The next big thing that came up is this:  research we had done led us to believe the clot was likely a side effect of the chemo.  And/or the PICC.  The doctor said 'no, it's caused by the tumor'.  Holy crap.  Really? So now what do we do?  The tumor isn't shrinking as much as hoped - and it's apparently narrowing his blood vessel so much, it's causing a clot to form (impeded blood flow leads to that?).

I shared with the doctor the story of my dad.  And that my mom had a stroke and heart attack.  The doctor hand wrote down 10 blood tests and sent us to the lab.  Home nurse couldn't draw these 'because they are very specialized; require special containers and freezing the samples quickly'.  Testing for how his blood clots and possibly a genetic component of his clotting abilities.

H. sneezed at least seven times in a row the other night - hard, head-jolting sneezes - and I panicked completely.  Begged him to stop.  'Don't hold them in'.  'Wait, hold them in'.  Hell, I didn't know what to do except to feel with every sneeze that this might be it.  Really.  One wrong jolt and the clot lets loose and in a matter of seconds, he could be gone.  How do we function like that for the foreseeable future?

I left feeling - for the first time, really - a deep seeded 'this really might not end well'.  I know you'd think I would have had that feeling a gazillion times before - but I haven't, really.  I feel like we know the path and we have to go down the path...but up until now, I've felt pretty 'sure' about it all.  That it will all be OK. I'm not so sure of that now.....and it's been really three of the hardest days so far for me.  I had to plod through work (including a board meeting Thursday evening) and make it through yesterday ( a day where I worked 1/2 day but am not calling it a work day 'cuz I'm so far over my days, it's ridiculous).  Struggling with so much heaviness in my heart.

I'm sure part of the heaviness is work related.  Wishing I could just pour it all out on these pages but I won't. It is disappointing to be realizing that someone may not be able to change - or that maybe change will happen but it will be as slow as a desert tortoise and where does that leave the rest of us while the tortoise works it all out?  I know my role is to lead and I'm trying - but it is so incredibly hard.  I can't do my job and others, too.  I just can't.  Or maybe I can - but I don't want to?

The TV selection here is pretty limited - keeping us in the casino is clearly the goal.  I wish I'd tossed in a light weight sweat jacket of some kind 'cuz it's overcast a bit and it will be chilly this evening.

I'm looking forward to a day and a half to just veg a little - cry a little.  Sleep a lot.  This 'me' time couldn't have come at a better time.  Really.  Hoping to regroup around a lot of 'stuff' and be ready to tackle it all again come Monday afternoon when I return to reality.