Sunday, January 6, 2013

burning hands, blind eyes

Just keep swimming.

Because what else do you do??  Our Christmas was awful, full of vomit, exhaustion, mild fevers, and smelly bathroom adventures.  Since this October, which was the first in two years that John's head has not been cut open, he has been put on BCNU (a drug that he lovingly called "mustard gas") which made him utterly exhausted, dried out his eyes, and left him feeling more or less like a nauseated dish rag.  And the tumor grew significantly.  So they put him on Avastin, which doesn't have the side effects, reduces swelling, and which Hopkins isn't totally fond of...they don't that it is possible to tell if this drug actually improves the tumor growth (i.e. kills it), or if it just makes the scans look better.  I didn't get that till this scan last week.  But John seemed to be having a spot in the left field of vision that was no and then missing.  So they upped the scan to last Monday.  Wednesday we were back at school and my hands started burning when I was in the shower.  They were red and swollen and hurt, but I didn't know why.  Thursday, went to clinic to get the results and found that the ENTIRE left peripheral field is missing.  As in, neither eye can see anything beyond the midline on his left side.  Apparently, it isn't his eyes, it is that the tumor is muddying the message being sent from the eyes to the back of the brain where vision is processed.  And if he turns his eyes even slightly, well he can see.  NIH is recommending he not drive anymore. 

After we got that, we learned that the tumor, which showed on the scan as a very dense bright spot, was looking much less bright, more cloudy now, with clear black spots in the middle which is very very likely necrosis.  So there was good news, too! 

But the vision coupled with the fact that his left arm and leg are starting to drag a little, was just damn scary.  These are the first deficits he has had.  Aside from the adventures in brain opening and skull stapling...

And this last weekend we looked at homes, which was refreshingly hopeful and normal feeling!  Looks like we might qualify for help with USDA loan funds and the Interfaith Housing Authority.  So we may not get our perfect dream home, but there is a place we saw with a fenced in back yard and a small cool playset, 4 bedrooms so we would all have our own room, a great garage, and lovely front yard,storage, and even a small plot for a raised garden!!!  And not too much in the way of repairs are needed, so maybe we could even update the roof and do solar panels!  That would make me so proud...

Now, we need to see if John actually can drive, find a way to make my hands and feet stop peeling/burning/stinging/itching, make an offer on the home, perhaps adopt a little dog for John's birthday present (I know- adopting a dog costs money, takes time and love and who knows what our world will be next month, or even tomorrow!  But it would make John happy...heck all of us...the little guy I am looking at, well, he might need us as much as we need him...)  How do we keep going?  We try to find moments when we can laugh at each other an ourselves.  We surround ourselves with amazingly sweet people who keep finding different ways to help....

I want to find ways to embody compassionate strength.  I want to take steps each day to honor and care for myself,  Because I can't give what I don't have.  And there are so many many sweethearts, so many worthy, unusual, interesting people I want to love and help.

I need to remember to get on here and type, even when I am tired and hurting.  Writing helps.  Reaching out, even if only to the void, helps.


Happy Three Kings Day and Twelfth Night...