Saturday, June 27, 2015

The Good, The Bad, and The Ugly

One month.  It has been one entire month since I last had the energy and brain power to even attempt a blog post.  In my defense, I had a good reason for going radio silent.  That damn machine.  It took everything out of me and I am only just now starting to get small parts of me back.

In my last post I started detailing some of the side effects of the radiation treatment.  I look back on that post with fondness.  I really had no idea how much worse it was going to get.  I have learned not to assume that I have hit rock bottom, because every time I think to myself, "Self, I think this is the worst we could possibly feel" I am proven wrong.  I could always feel worse. 

As my weeks of radiation progressed, I went from mildly annoyed by side effects to laying on the bathroom floor praying to G-d that things would get better soon.  The superradiated saliva I talked about earlier...that was nothing.  Each day, things got progressively worse.  It felt as if I had a fountain of white glue in my mouth, thick and sticky and everywhere.  Up my nose, down my throat, into my trach.  I was choking on glue and the only thing I could do was spit.  A lot.  If I was lucky, that worked for a few minutes.  Most of the time, not so much.  I will spare you all the gory details, but whatever you are imagining, so, so much worse.   My sunburn got worse too.  We are talking lobster red from about the middle of my nose to the middle of my chest.  There are no pictures.  There will never be pictures.  And with the sunburn came the most horrific blisters, oozy and painful, as if all the nerve endings in my neck had suddenly come to the surface to be poked and pinched.  The only side effect that didn't get worse were the mouth sores.  Thank goodness for small favors.  The sores in my mouth seemed to respond quickly to the "magic mouthwash" I was prescribed. 

June 18th saw my last day of radiation.  I got a certificate and everything!  But it was not the end of my ordeal, not by a long shot.  Every day post radiation, things kept moving downhill.  I was warned about this.  Nobody ever gives you a precise answer, I know, everyone is different, but I have been told that the side effects will last anywhere from two to six weeks post radiation.  During that time, I am still "cooking" and can expect to continue to feel all the side effects.

I am now eight days into my post radiation life.  I have only left my bedroom a handful of times in the last eight days.  Except for the time I spend in the bathroom, I am propped up in bed, not moving, not talking, sometimes not doing anything but breathing.  The first six of those eight days were brutal.  Everyday was a little harder, a little more frustrating.  I couldn't even cry about it because crying just created more sticky glue.  But in the last couple of days, I have begun to see the smallest little pinprick of a glimmer of light.  I had two nights of relatively good sleep (relatively being I only got up to deal with my glue issue three or four times instead of every 20-30 minutes) and that has made a huge difference.   I finally seem to be in a good space with my feedings.  For a while I was getting very few calories, as I was unable to do feedings regularly and when I did, there was no guarantee that I would keep anything down.  I am still not getting the number of calories prescribed but I am working up to it.  The blisters on my neck are healing well, thanks to the diligent care my hubs has provided.  More on his amazingness in a later post...there is a lot to say on that subject.  The redness in my face has progressed from lobster red to a deep freckled pink.  I have enough energy to lift my head off the pillow and get my thoughts down on the page here, but I know a nap is coming as soon as I am done.

So, the good (not much, but a little), the bad (lots of that), and the ugly of my last month.  Here's hoping that the good increases, the bad decreases, and the ugly just fades away.

Love and sparkles to you all,
Gayle