Monday, August 2, 2010

Masking the Problem

August 2, 2010

I tell you what, if God wasn't making Himself so clear to me right now (and for the last several days) I could easily go insane.  Last Friday I went to the consult for Whole Brain Radiation (WBR) and was fitted for a mask for the radiation treatment.  I can honestly say that the fitting was one of the top three horrifying things to come across my adult life.  I am slightly claustrophobic and I'm pretty sure this fitting threw me over the ledge.

Let me explain...because it wasn't explained to me.   You go into the room with the big radiation machine and lie down on the hard metal bed.  You're adjusted and adjusted and then you're finally exactly where they want you.  Under the cross hairs of the radiation beam.  Then, all of the sudden, they're coming at you with this crazy thing that turns into a mask.  I don't know exactly what the mask is made of but I believe it's some type of teflon.  But what it feels like is super thick plastic wrap.  It's warmed up with water and then stretched, VERY TIGHTLY, over your face and snapped into a frame on both sides of your head.  It hardens as it cools making it impossible to open your eyes (you're told to close your eyes as they stretch it across your face) and impossible to talk.  It's a completely breathable substance but, from the head up, it's impossible to move.  Of course, that's the goal.  But when you're claustrophobic and you can't see and you can't talk, it feels like suffocation.  I wanted to scream but since I couldn't,  I had a panic attack instead.

With most scans, you're given a panic ball to squeeze in case you begin to freak.  For some reason, the same procedure is not followed with radiation.  I find that strange because this is actually far more freaky outy than any scan machine I've been in. 

What happened instead?  Well...let me tell you.  The main tech had a "shadow" that day...a student from a local college.  All very common in the medical world but what I've noticed is that when there is a shadow, the one in charge is often distracted.  So, it wasn't super apparent to them that I wasn't in good shape.

I tried to get across my fears by waving my arms around a bit but the student wasn't getting it.  And the other tech wasn't nearby.  The student asks if I'm ok.  So lame because I can't answer.  She then says, "give me a thumbs up if you're doing ok".  I kept waving my arms then it finally dawned on me "duh, do a thumbs down".  So that's what I did.  But the student didn't do anything except to say it was all ok.  SHE wasn't the one under the mask!!  So clueless.

Dr. Kim (my radiation oncologist) came in to give me some information from Dr. Link and figured out quickly that I wasn't ok.  He stopped the "planning session" and told the techs to get me out of the mask.

I walked out of the room, immediately saw Reed and began to cry.  I was completely shaken and I still had to do the spinal hour and a half long another scan tube...just across the parking lot...needles.

I did pretty well...sort of.  I didn't panic but I did experience a bit of anxiety.  This time however, I could pray out loud (something I couldn't do with the mask on) and that put me at ease.  That and the panic ball.

The day was finally over and I was finally able to go home - an hour later than I was supposed to.  I left without knowing the results of my scans and I still don't know.  I have an appointment tomorrow at 1:45 to finalize the planning.  I have no idea if they'll want me to begin radiation or if I'll get the results of my scans.

I'm literally living day to day and am surviving on amazing things that God is telling me.  Many of them coming from friends.  I love it when God speaks to my friends on my behalf.  I also love that God has not allowed me to be alone the last several days.  I'm not being allowed to spiral into any sort of depression or negative thoughts.  It's a good place to be.


  1. Im soooo glad ur in a pretty good place, keep up the smiles...praying and thinking about u everyday, I totally understand the claustrophic thing, freak me out! Just know Im here, I know I cant do anything for you, but Im here. Love u

  2. I hear ya on the mask! Same thing happened to me and I had to sit there for about 5 minutes to 'let it harden' and it seemed like eternity.
    Hang in there - you are one tough cookie.......God hears you.