Just Stuff

H.'s hair is already thinning - I ordered a good razor for him so he's ready.  When he's ready. The thinning isn't hugely noticeable but I do see what he sees - getting a little thin on the sides.  Surprising after only one treatment.

The Home Nurse came today at our request because the dressing over his PICC line needed a change.  They are now planning to visit every Tuesday and Friday and may add a third should we need it.  BUT - the PICC lines are already not working well - she could only get blood from one (should be able to get blood from all three) so she is suggesting we try to get a Life Port instead.  The Life Port is a central line that is in his chest.  It won't require flushings (now up to 3x per day on one and 2x per day on two); or dressings of any kind.  It is completely fine for bathing/showering and requires no special care.  Sounds like a dream and we definitely want to do that for a better, easier longer-term plan.  Not sure why they did a 3-port PICC - she said they are pretty 'rare' and one line would be plenty - but it was put in during his ICU days and they did have a lot of meds going in at one time.  So three might not have seemed like 'too many' back then.

I visited work today briefly and left feeling scared out of my mind that I can't do this.  I can't be the C B O of a district and the mom of a seriously ill kid.  I'm not sure the two are compatible with life.  Seriously.  It's really got me flummoxed....but it is what it is.  I will have to go directly into 'building the 14-15 budget mode' in hyper over-drive (losing 2.5 weeks this time of year is hard to overcome) just to get things done - while still trying to keep it together and help out here - while simultaneously trying to keep it together re: me, myself and I.  It's hard to think about it all right now....so I just keep tamping it all down.  Which never helps.

A good cry is on the horizon.  Like the Holly Hunter character in Broadcast News - where she has a good cry every day and just gets it out.  I did that several times during H.'s hospital stay and I have to say it felt really good to just let it all out. So maybe doing that will help.

I will regroup.  It will be fine.  J. is great with everything here and I have never been more grateful that he's retired 'cuz he can easily to all the driving to/from appointments.  Make phone calls.  Etc. .  What we can do together, we will - and there will be plenty of times when my days are less hectic.

Example:  we are not going to Cancun in July - so those days will be low-key on the work front.  Summer is 'easy' for me once budget is done and I'll be able to work shorter days and be there for appointments, etc. .  And when radiation starts, I can be there for those appointments.

There's still so much to come.  In spite of all he's been through already - there's just so much more to this....and I struggle knowing that.  Struggle to hide that I know that - 'cuz he's 20 and thinks it will all be as easy as the first chemo.  It likely won't.