Stages and Changes

A long, long, really long time ago I rode the rapids for the first time in Upstate New York.  I was terrified most of the time.  I saw many rocks and was surprised when we went down a small waterfall.  (No one warned me.)  Then I realized there would be parts where the water is calm.  We were surrounded by so much natural beauty.  This adventure reminds me of my cancer journey.  My last MRI has hit me in the head like a rock jutting out from the rushing water.  My disease unfortunately has progressed.  I have not been wearing my Optune cap so I could’ve had better news if I only found a way to stay motivated.  Well, a bad MRI had me in tears this week even though I only understood half of it.  The doctors confirmed yesterday that the Optune cap is the right way to fight back.  I’m doing my chemo, but that isn’t enough on its own.

Okay, I only need to get hit in the head once.  I went to the Barber to get my head shaved and prepared to wear the Optune cap again.  It is a very innovative treatment that’s still new.  It  has bugs and glitches.  Wearing it 18 hours a day is not easy.  GBM is coming at me so I have to jump up out my corner and hit it back.  I’ve made a pledge to myself to do my best and wear it as much as I can.  If I have a side effect or any discomfort, I’ll call the company and see if there’s a solution.  I can’t give up. 

Now isn’t the time for quitting.  The past few days has been very emotional for me and my family.  It’s still difficult to really talk about.  I don’t even know if they understand anything I’ve shared with them.  At least here I can type and cry at the same time.  It’s like those damn rapids.  There are plenty of rocks hiding under the water.  Your job is to try and see them and go around or over them.  I’m seeing this as a setback because I know what needs to be done.  So I just have to recommit and do it.  Because that rock is not moving.  It has been there for years facing the racing water coming down off the mountain.  Nope, I have to do my part and not run into it head on, armed to the teeth.  If you want to learn more about Optune, check out their patient website.  The tech is interesting.  I don’t agree with their marketing though.  It is not small and lightweight.  The bag is big for me and 2.7 pounds is no joke when you drop it on your big toe.  Carrying it all day is not easy especially on days when I feel fatigued.  Well that’s enough ranting.  If and when I get a more detailed explanation of my disease progression, I’ll share it.  God Bless! Thanks for stopping by and reading this long article.

UPDATE: This afternoon I was able to get an appointment with Dr. Komotar at University of Miami.  My Radiation Oncology recommended him.  She said he’s had lots of success helping GBM patients with a new surgery.  I get to see him next Wednesday.