Six Months

This time six months ago, we were at Tracy Hospital watching H. be Medivac'd to Doctors Hospital. Today is the six month anniversary of the day the wheels flew off our bus and splattered all over the place along the route to our new normal.

Is it normal?  No, not yet.  Some days feel relatively normal.  The first month or two felt pretty intense and some days, there is an overwhelming sense of 'Holy Crap' to it all.  Many days now pass pretty normally - H. is doing well post-chemo and post-radiation.  He's bored out of his mind and not entirely motivated to do anything to resolve the boredom except 'chill-ax' with friends.  He sleeps a lot (which may or may not be radiation recovery related).

We've had many moments that he makes my heart sing.  He has an amazing mind and his thoughts and the places he goes in his head and has shared more of lately (such severe boredom that he's actually talking to his parents) are wondrous and magical at times.  He's funny and witty (always has been) and beguiling and sweet (also always has been).  He is also sometimes exasperating and challenging - and he's always been those things, too.

He's a wonder - and every time I look at him - every time, really - I think 'he is a miracle.  Everyday with him is a miracle'.  And I will always feel that way.  He's had so many miracles in the last six months.  

We had H.'s appointment last week to go over his most recent scan.  The doctor was running significantly behind that day.  Our 10:30 appointment stretched to 11:00 then 11:30.  We finally saw the doctor about 11:40.  He had a reception room full of patients and it was clear he was trying to catch up in time for his staff to be not too late to lunch.  He glossed over questions - I was asking 'is the mass gone?' over and over.  'We'll watch him for a long time; there's still swelling but that could be radiation'.  Then we looked at the scans which we think looked better than the scans in the first few months?  But we're not radiologists and honestly, 3-D CT scans look like just a lot of varying shades of gray that mean something if you're trained to read them.  To us, not much made sense.

We left sort of frustrated and I was definitely on edge.  Thinking that we should insist on a second opinion and then realizing that because Blue Cross hasn't negotiated an agreement with Stanford, we currently can't go there - it won't be covered.  UCSF seemed the most likely.

My always patient husband requested copies of every single scan H. has had - 40+ pages - and read them all.  My simple explanation is this:

The 'mass' the ER doctor referred to six months ago tonight isn't really a tumor.  It's not something that can be removed or eradicated.  The 'mass' was huge amounts of swelling of virtually every type of tissue in H.'s chest.  The swelling wove itself into his vascular system and wrapped itself around his windpipe.  Narrowed his windpipe in a couple of places and moved it off center by a couple of inches.  It was pervasive, life-threatening swelling - and that is caused by the disease.  You can't remove that kind of mass - it just has to be shrunk and reduced and 'dissolved' - and hopefully doesn't reoccur once the lymphoma is eliminated.  The lymphoma is the 'mass' - it caused his tissues to go crazy for a long time.

There is still swelling - and it's hard to know what's causing that.  It is likely (fingers and toes crossed) caused by the radiation.  Blasting it with 3000 degrees centigrade over and over and over for three weeks in a row will do that to tissue.  But we won't really know for [insert unknown time frame].

So we wait.  PET scan (full body scan) scheduled for December and our next appointment with the oncologist is scheduled for 12/23.