I know when the caged bird sings….

…it is when this bird takes his Optune pads off.

The Novocure/Optune results released this week have been very positive and I know it should be helping to keep this old tumor at bay AND it is a great non-invasive way to treat but it does feel like a cage at times.  I have gone just under three weeks with this thing and when I first heard about it I could not figure out why (if you had the pads on) you would not be running it 24/7.  Now I understand how nice it is to have it off.  I really noticed it yesterday when Jessie put it back on after several hours with no pads on.  My cross races and gym time are about the only time I don’t wear the pads and those 2-3 hours are glorious.  After experiencing that feeling I think we will settle into an every two day rotation where we replace my pads at work after I go to the gym.  Being unencumbered is so nice.  My mom has been on Oxygen due to pulmonary fibrosis and I can relate to her situation always being attached to something.  It is so draining to constantly be lugging something around.  Thank god I have the new version that is so much smaller than the previous version.  I hate to complain about something that is working to save my life but it is a transition accept and deal with.

Plus these pads get heavy, the four pads together weigh just over 8 ounces and then have a 2 foot cable pony tail.  It seems like you always have something tugging you down like a ball and chain.  I am less likely to get up and do something because I am attached and have to lug this thing around.  The backpack is helpful but that gets cumbersome and annoying after a while.  The pack is just a little small for me.

Yesterday was so wonderful with probably the longest period of not wearing it.  I just felt that weight and tug once Jess started attaching those pads – my cage, keeping me from flying like I used to.  But better to have some clipped wings than to have no wings at all.  Optune, just keep me alive and I will find my own way to fly.

MRI next week – fingers crossed it is a non-event AND we get to see Dr Jerry after his return from the Society of Neuro Oncologists (SNO) conference.  I am sure he will be all jazzed with new and exciting discoveries that will pump us up as well.  Half the battle is looking forward, staying positive, and having little victory’s.

Here is to next weeks VICTORY!

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