Sunday, January 29, 2012

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.