Tuesday, January 31, 2012

I listened to "I Don't Like Mondays" this morning getting ready for work.  The Tori Amos version.  I thought it was an appropriate song for the day since I struggled with relaxing for a few hours and, around 12:30 when I was starting to drift off, Neil started crying.  He has never been as easy as my other two.  With them, if they cried at night and I was just too wrecked to hang tough through the tears, I could bring them to bed and snuggle.  Not Neil.  In the first place, he will not just lay beside me.  He must lay, belly down, on top of me.  No getting comfy for Mommy.  And then there is all the head lifting, looking around, slamming back down on my chest.  If I am lucky and he misses my eyebrow or cheek bone.  Which goes on for about an hour or so.  Till I give up and put him back.  So this morning it was from around 1:30-6:15 that I slept.

That didn't turn out to be a good reason to not like Monday's in comparison, though.  John had a headache.  That is one of the other big signs they have regularly told us to pay attention to.  He doesn't get them often, or really at all, if things are normal.  (whatever the hell that means!)  And since I still didn't have a "preferred sub" as of this morning, I was still functioning on the assumption that if I take one more day, I will be "asked" to take a "permanent leave of absence" without pay till the end of the year, I couldn't stay home with him.  I asked him to maybe write down what he was feeling.  At least to make sure to keep our friend who was coming to help with the kids abreast of everything.  Then, he sort of just stood there in the middle of the kitchen, staring.  Now we function in the realm of "is this a seizure??"  And other odd things like instead of putting 3 waffles in our large toaster oven so that Cilly and Neil could have breakfast, he put one waffle in for Cilly.  None for Neil.  Because, he said, Cilly would only eat one.  ??

His headache didn't go away.  I was in the planning room getting copies made for the day when my principal came in, an odd surprise.  We were discussing the substitute situation when the phone rang and my teammate popped in saying it was for me...I picked up the phone and saw John's number on the caller ID.  My heart hit my heels.  He had called NIH about the headache and he was heading in for scans.  They were worried and wanted to see him asap.  His dad was going to bring him in.  When we hung up, my principal kept talking about my sub as she had her back to me and was making a couple copies.  I sat down.  Noticed tears were tumbling down my cheeks without blinking them out.  The nice thing was that, when she turned and saw, she offered to watch my class for a little...my response was just that if I took a minute I would need an hour and I couldn't do that.

So we talked about magnets and elapsed time, checking the units you are working with so you don't regroup a chunk of 10 when there are 60 seconds in a minute, not 10.  I made it to lunch time somehow.  And realized I hadn't checked with a student who needed to complete the math work he'd avoided during his lunch and recess time.  So I did my best teacher speed walk back to my room to make sure I got a pencil, then down to the cafeteria to make sure he was seated separately and working.  And he wasn't so I was glad I'd checked.  Till I got back to the teacher's lounge and realized I had missed a call from John. erg!

The CT scan showed more blood on his brain, he was waiting for an MRI and then a clinic meeting to decide what to do.  He cried while we were talking and things inside me broke a little because it was his dad there with him and not me.  There was a significant chance, he told me, that they would need to operate to drain him. 

I spent the rest of lunch waiting in the office to talk with the principal, who was dealing with some big behavior issue with kids flowing in and out of her office and the office of the assistant principal.  Eventually, I was able to get permission to leave early.  I found my son, told him where he was going after school, and started toward NIH.  Till I realized I needed to figure out a lot more stuff before heading out of town!

Like, who would be there for the little ones, what about the dog, the cats, and then there was the little matter of my job.  If they did decide to operate, I was going to go be with him.  I would NOT leave him there alone.  So there goes my job.  I called the union rep, no call back.  I called the social worker at NIH familiar with our case, she is out till next Wednesday.  I called/texted several friends to find advice about what resources are available to us to help us not end up homeless once they make me take leave and to find out who could help with the little ones over the rest of the week.  Makes me tired just thinking about it all.

I tried the union rep again, and this time, instead of being at lunch like she was at 3:15, she was in a meeting.  So I left a message and asked for a call back.  Which still has not occurred.  And it's 11:40.  (maybe that is why I'm tired)

Okay, so I guess that means I call my principal and tell her I am going on leave and will need help finding resources for keeping our housing.  John and the kids receive disability from social security.  However, it is about $200 short of covering our rent, let alone paying for food, gas, bills, etc.  She interrupted me to let me know that she had JUST (4:00ish at this point) secured a sub who would be able to act as my main go to lady, my preferred sub, so that my students didn't have a "parade of people" teaching them in my absence.  So, for two days anyway, I can be with John and not worry about losing my job.  AWESOME!  I will take what I can get and say Thank you, Ma'am!!

The surgery went very well...John said several times that he must have "popped like a tic".  One thing I am now very familiar with is the way that he will repeat himself over and over when he is coming out of the deep anesthesia needed for brain surgery.  But Dr. Park said that he was very pleased with the way John's brain expanded to fill the gap completely after draining.  There was discussion of brain sag and droop, which didn't seem like words that should be strung together.  Basically, he has to stay horizontal for anywhere from 1-3 days depending on how he heals.   He wanted me to take a picture of him so that everyone would know that he was okay. 

And so, the Unitarian who feels that prayer comes in all sorts of forms, from a quiet reflection, to a god with a son and a spirit, to goddesses and supreme beings of all shapes names and sizes says, more comfortable than I ever thought I would be with a request like this, please pray for us.  Whatever that looks like to you.  Just hold us in your hearts, in the light, connect us to love and healing.  Before I left, I told John I don't regret marrying him for a single second.  Not one.  He can't keep the house clean for anything and I don't care.  He is mine, mess and all.  That's the good stuff- what makes it real.

It was nice to come home to a happy dog.  I'm not sure who out there is familiar with the episode of Friends in which Rachel convinces Phoebe to go running with her, but my dog runs just like Phoebe.  It is awesome. 

And now lavender lotion, soft music, and hopefully some good dreams and sleep deep enough to drool on my pillow.

Sunday, January 29, 2012

Race for Hope

So I suppose I should be asleep.  But I just feel like I need to do something positive for John today.  After coming home from church, it was like someone unplugged most of the wires to my brain.  I was shaking and just wanted to sleep.  But John needed rest more, and Neil (our one year old) kept climbing the ladder to the bunk beds in the basement and getting stuck at the top.  Damn little baby.  I have said it before and I will say it again, it is a good thing that little booger is so cute!

Anyway, I finally got on the Race for Hope site for the D.C. race and created the team for John.  Below is the link to my page:

Badge: Team Captain

That link SHOULD become a sign and a link to my team page.  Of course I am new at this and right now it looks like a bunch of weird code type things to me.  Hope it translates right.  If not, I don't have the energy to redo it tonight so I will get it up tomorrow.  

Light and love and restful sleep to everyone.  (And wear your pj's inside out and backwords- maybe we will have at least a delay tomorrow!)

GBM- blog title or evil cancer?

It has been suggested that I make an attempt at blogging about what my family and I are going through.  It has also been suggested that I ensure that I am writing to a specific person, at least in my head, so that there is a focal point to the writing.  So, since this is about my family and since you died before getting to know any of my kids, but after making it clear that you loved the man I chose to marry, this blog is to you, Mom. 

Clever names being a good idea for blog titles, I wanted to use the Glioblastoma Multiforme letters for the title.  GBM is a grade V brain tumor.  It is the most aggressive type of brain cancer you can have.  It is a primary brain tumor, and the good news there is that it will not spread to anywhere else.  However, it is an evil bastard and they will never say it is cured.  That's because it exists on the cellular level and they do not have tools to accurately determine if it is still there or not.  I don't know how that is different from other cancers.  When someone you love gets cancer like this, you become a scientific, biological expert, specifically in THEIR cancer.  Or really, in the things you remember that they tell you about THEIR cancer. 

 Quick background will be hard to give, but I will try:  John was diagnosed with this brain cancer last year in October.  I had given birth to our third baby, by Cesarean, August 29th and was still out on maternity leave and moving slow.  He had a persistent mild headache that was out of character and our GP sent him to get an MRI.  We found a 4cm mass in his temporal lobe.  Two days later, the surgeon who operated on Ted Kennedy was admitting him to Washington Hospital Center for the weekend to prep him for brain surgery on Monday.  That winter, he received radiation and chemo.  He had to stop the chemo after a few weeks because it made his white blood count drop to a dangerously low level, but did the whole course of radiation

We were almost at a year.  In fact, we were making a list of who we would invite to a Day of the Dead type party where we would celebrate his year with clean MRI's and also our loved ones that have passed on the day that we discovered he had a regrowth.  So this October 2011, he had another brain surgery, this time at NIH.  No radiation this time, but he did qualify for another clinical trial.

He hasn't been recovering as well this time- he has a bubble on the side of his head of spinal fluid build up, and has been struggling with blood showing up below the skull.  He hasn't been allowed to lift the baby, or groceries, or anything heavier than 10 lbs, walk the dog, or do anything stressful.  Even a hard poo could cause serious problems.  Awesome, huh?

But he still had not had a seizure.  No neurological symptoms.  Last night I went out dancing with some ladies, came home late.  He was up and we talked for a while.  When Neil woke up this morning around 7:30, I let John sleep in and went to get the kids dressed and fed and ready for church.  (We love our Universalist Unitarian congregation, but it still feels odd to talk about going to church for us...)

I sent our 5 year old to get Daddy to come down.  When John appeared, he was hard to understand and said something about how he was drooling.  What???  When I looked at him it was as if he had had oral surgery- his mouth looked swollen and puffy, and he couldn't enunciate clearly.  I had him smile and "show his teeth" the way they do at his neurological evals.  The left side of his face wasn't working right.  My heart started pounding, I made SURE my voice was measured for the kids sake.  With hands that were shaking, I put out some Cinnamon cereal squares for them, gave the older two juice boxes, and proceeded to call every person in my phones contact list.

Of course, it was 8:30 on a Sunday morning, so who the hell answers their phone?? 

We finally got one of the people on his case at NIH to call back.  By that time, his face was working right again.  That sounds so messed up!!  Whatever.  It was.  So she told him to double his Kepra anti-seizure meds and make sure to come to his Tuesday appointment for his MRI.  That's it.  So we went to curch.

Now I just need to figure out how to be there for him, not let my anxiety disorder drive me over the edge, and not lose my job.  Oh, yeah, the day before winter break, I was told that I had one day left of unpaid leave available before being asked to take a "permanent leave of absence" till the end of the year with no pay or benefits.

But, one good thing is that I have lost 38 pounds so far.  Of course, all I can think about right now is popcorn and pizza, so hopefully I will stay good on my diet!

A break would be really nice.  A break, and a house with a yard, and a full time Nanny so that someone could be here to help John and keep an eye on him (he didn't realize anything was happening so now, of course, I worry that he will have more seizures and be clueless and alone with the kids), and a really long nap.

So, yeah.  There's the first blog.  We shall see where this goes from here.