Sunday, January 20, 2013

decline...or sideways slide...

How incredibly fast a week can change things.  Last week on Saturday, John was doing ok but for the vision issues.  Then, Sunday, he woke with difficulties using his left side.  We were rushing out the door to church so I could be there for choir practice and I asked him to change Neil while I got everything else ready.  It took him so much longer than usual, it concerned me.  He started limping.  Each day, I watch him struggle with getting up, with doing anything, everything.

He is determined he will "get it back".  His doc at the Cancer Care center in Frederick promised him he would.  I told him, John, I thought that was a bold statement.  NIH says that he may or may not.  Which is just a  bunch of air.

I keep remembering how the docs at NIH told us that when patients with GBMs die, they just get more and more sleepy, until they eventually just don't wake up.  I am not sure what that will look like.  I can't even wrap my brain around how to think about that.  So I try not to.

Our new dog is adjusting to everyone but the cats quite well...super snuggly and as long as he is on his leash, he doesn't go after them.  I broke my toe falling down the stairs the other day.  I figure it was my way of having empathy for John, since it is my left foot.

I also had a friend the Walkersville area offer to organize and clean and organize event for my family!  Yesterday, some friends came in to help clean the bedroom and kids room so that it is a safer environment for John getting around.  Last week, he fell three times in our bedroom.  Everyone did an amazing job.  I was so very touched and grateful.

We are still looking for a home.  We were so excited about what we thought we would be able to get using both the USDA and the Interfaith Housing Authority.  We thought we could find somewhere we would actually be able to fit, something nice that really would be our forever home.  And then they came back with a $271,000 limit for the best of the best credit.  That won't be us.  So we are back to looking into 3 bedrooms, or townhomes, or houses in areas that are a little sketchy to raise kids.  We are going to look into just doing a regular USDA loan and see how many more doors that opens.

I find myself thinking of the last little girl I worked with at the Greenhouse Nursery School in Maine, Samantha.  She was so damn sweet- this unusual little dark haired girl with autism who LOVED hugs and talked a mile a minute with only about 1/4 of her words in English.  I would have followed her through elementary school as her aide if they could have paid me enough to afford my school loan bills.  So when I visited a year later, I stayed at night at her house.  Samantha had learned so much language, it was breathtaking.  Just as loving and excited, talking just as fast, now all the words were English and it was so cool to understand her!!  I went with her when she got her infusion.  The year that I had been gone, she was diagnosed with leukemia.  Talk about not fair.  I never was able to hear about how she and her family were doing after that visit.  I have a picture of me holding Samantha over my head in the hallway by our room.  It is one of 4 pictures of me with kids I have worked with over the years.  Kids I will likely never see again who had large loads to carry for different reasons.  For years after I worked with them, the thought of them and not being there to help and support them would make me cry.  Kids I will always love in a special way, kids I have to believe have made it through, one way or another.  I carry them with me and try to allow them to make me a better teacher, a better person.

I have to believe that John can do this.  I have to believe that.  And I have to plan for what to do when he doesn't.  I need to find a way to line up daycare for Neil.  Of course, when I was on leave last year, the Social Services lady told me that we had a great need, but they didn't service need.  They serviced numbers and we made too much with John's disability alone.  It won't pay rent, let alone anything else, but that is irrelevant.  So not sure just what sort of help we can get on that front.  But I find I have to believe it will happen, somehow.  Something like what they say in Shakespeare in Love.  It'll all work out in the end.  How?  I don't just does.  I continue to look for a house even though it scares the heck out of my dad, worrying that I can't afford it, that I won't be able to care for the house...I just have to believe it will work out, that we can do this.

Because if I don't believe that, I don't know what to do.  At all...I just have to smile and laugh with the kids, watch shows and snuggle with John when possible and try to take the fear and sorrow and gently tuck it into a special, closed up place in me.  Latch it closed, not lock it.  I can't pretend it doesn't exist because if I do, it will gain too much power.  If it weren't for the kids, I would be willing to chance that.  But I love them and need to figure out how to get through this all as whole as possible.

So now, I will go cook dinner, throw the kids into the bath, maybe put a show on for the kids, and, if john has any energy, get him to watch a show with me...

Just keep swimming...

Sunday, January 13, 2013

John's 45th Birthday

Today, my husband turns 45.  Happy Birthday!!!!  We got him and the family a little dog, named Sammy.  He is such an incredibly perfect fit, it seems odd that he hasn't always been here.  He and Sokka already play tug, he slept with us last night, and so far makes us all smile an incredible amount.

Last night, my "bonus mom" called to tell us about a woman who beat her GBM.  She talked, in the interview, about how she felt God had a plan for her.  I keep thinking that maybe I should try to pray.  I mean, I do pray, but maybe I should pray more.  I think about Scott and how his family told him his mother died because he wouldn't pray for her and I just can't believe there is truth in that.  Another friend shared after I asked her about her thoughts on this...after my discussion with her, I thought maybe it is the type of thing you have to pull waaaay back to understand.  That seems to be the only way I can even pretend to make sense of it.  If "JimBob" dies of cancer, and we see it from just here and now, and he has a lovely wife and three amazing kids who need him, well, it just isn't fair.  But if we pull far enough back to see forward in time, perhaps a generation or two down the line, someone from his family is the one to discover the cure to cancer and would never had done so had he not died.  Here is my flaw with that vision:  there are just so many many good people that die, they can't all be related to the future person who makes that discovery. 

Perhaps it is somehow related to the opening of hearts that happen when he are hit by pain.  Except that is not always what happens.  Not at all.

I also think about how humans always strive for meaning, even when there isn't any. 

Mostly, I just wish that I could have a normal life.  I used to laugh at that phrase- what is normal supposed to be?  Now, I would settle for any version of it.  Even just one where I don't think about death every single day.  No matter how gently I treat those fleeting thoughts, they are still there.  John is getting tired more and more easily.  His left leg is heave and he is limping.  Thankfully, his field of vision loss is not one the eye doctor said will effect his driving.  But it makes so many little things harder- he bumps into me all the time; when we are in the car and I am driving, I find that I constantly use small gestures to add meaning to what I am saying which he can no longer see.  The other night, I took him out for his birthday and at one point, the waitress brought over a dessert menu for him to see and leaned down to show it to him.  He didn't even turn his head and I realized he had no idea she was there...

This woman who survived was young, younger than John, and stubborn.  She not only has no visible tumor on her MRI now, but she was able to have a lovely little girl, which they thought was a bit beyond highly unlikely.  Such an amazing story!  I need to find a way to not fear believing in hope...I won't give up trying.

Monday, January 7, 2013


So many meanings, "focus"...John can focus his eyes enough to drive, we learned tonight!  He has the ability to focus enough for depth perception.  Also, there was a test that the eye doc did which would have messed with his vision and focus in such a way that he would have had a seizure, was he currently prone to them, which we found out he is not.  Very very cool stuff tonight!

It is also about focusing on the happy moments and good things...the house we qualify for, when we do, will be far less than we originally believed.  Very sad because it seems like it will be very hard to find a place big enough for us and with a yard for the dogs and kids.  BUT, when we do find a place, the mortgage at the lower price and the lower interest rate will be significantly less than we pay now. So the looking will be more prolonged, but the end result should be better.

John keeps falling.  He is the kind of person who is not used to losing his balance.  Ever.  Not really.  And now, all sorts of things make him fall...he keeps tripping on the stairs and on the curbs, sliding in socks on the bathroom floor and unable to recover.  Our house is a somewhat insurmountable mess right now.  Most of it is that I am at work so much later figuring out all the transition stuff from fifth grade to second grade that I am less successful at helping keep things under control.  Then, I was planning on working with everyone to clean over break, but we got STUPID sick.  Then my hands hurt to do anything now we are beyond messy and into embarassingly dirty.  And since things barely fit here, we are overwhelmed when thinking about trying to clean up, cuz, well, where does it all go?!?!?  So there are piles of stuff everywhere for him to fall over...

So I have done this once before, but now I need to ask again- if you are the kind of person who loves to organize, gets a sense of pride and accomplishment in helping people who are a mess find a way to sort their way out, please find some time to help us!!  Of course, I don't know if you actually exist, but I have read about you and I believe in many other things I have read about in books, plus my years canvassing taught me that if you don't ask, the answer is always "no".  So I will give it a shot...we will help, perhaps enterain with bizarrity and unsusal stories, offer you food and, if you like, wine, and in return, just bestow upon us your magical clean/organizing powers...Amen?

So, I will try to sleep now, focusing on the fact that, while John is not exactly himself, he is still here. He can drive, he still loves to laugh, he still annoys me in sweet and stupid ways like no one else can. My kids are so amazing and beautiful and funny and weird and loving and smart and dad and bonus mom gave them this nifty bank.  It measures the coins in it like the gas in a car's tank.  The idea was to put some of the money they earn for good behavior and for helping around the house with chores and such into their own fund to save, and some into this little bank.  When it is full, we get to help the kids decide where to donate the collected coins.  We have talked about our church, animal shelters, local families in need...that focus fills my bucket too...very much.  So, to be honest, I am scared and disappointed and frustrated.  But for now, I seem to have found away to tuck something away, under my wings, so to speak...something that gives me lift, hang...focus.

Keeping my eyes focused on my many blessings, right now, is giving me hope.  I feel connected to possiblity.  And I needed to share that.  Beacuse if I can feel that with what we are going through, I know it is out there for real.  It may not be able to save everything I want it to, but right now, it is helping me coast...

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...