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

Radiation....the gift that keeps on giving

I have been putting off writing this post because I wasn't really sure what I was going to say.  The last week has been pretty awful and I wasn't sure I wanted to write about all the gory details, but I promised myself I was going to be honest and open about all of this.  So, no sugarcoating.  This is the real deal, folks.  Cancer, in all its glory.

I am now 12 days into my radiation treatments.  You know that old saying about the treatment being worse than the disease?  Except for the fact that this disease would kill me if left untreated, it is absolutely true.  The cancer itself was a minor inconvenience, not much more than a canker sore.  The treatment is so, so much more than that. 

I wrote last time about fatigue and losing my sense of taste.  The loss of my taste buds was almost more of a mental side effect than a physical one.  And the fatigue, while draining, wasn't a deal breaker.  After almost six years of dealing with rheumatoid arthritis and its side effects, I have an arsenal of tricks to keep myself going.  Those strategies seemed to be working for me pretty well, so I got a little overconfident.  I can do this...no problem.  Ha ha, said the radiation, I'll show you.  (Yes, in my head, the radiation machine and I have conversations.  Don't judge.)  Oh boy, is he showing me.  One of the effects of head and neck radiation is that it works to destroy your salivary glands.  I thought that meant that I would have a dry mouth.  Eventually, that may be the case.  In the meantime, I have just the opposite.  I have a mouth full of saliva.  It's almost like I took a big sip of water but forgot to swallow and am just constantly walking around with a full mouth.  And this isn't just any plain old, run of the mill, spit.  No, it is supercharged radiated saliva.  It is sticky and thick, and makes me gag when I do try to swallow it.  I now spend my mornings (and a good part of the rest of the day) spitting into the sink, praying desperately not to get sick.  I have spent so much time in the bathroom, I keep having flashbacks to my first two pregnancies, when morning sickness was so not my friend.  Trying to talk with a mouth full of goo is daunting.  I am either drooling or spitting or choking, but can't seem to get the words out.  As a result, I am quieter than normal (of course, not everyone thinks that is a bad thing!)  Just like the food, I feel like I had good things dangled in front of me for a few months and then yanked just out of reach. 

As if that wasn't bad enough, I have developed sores all around the inside of my mouth and on my tongue, as well as a wretched sore throat.   The sores ache and burn like my mouth is on fire, necessitating almost constant use of pain pills.  With the pain pills comes the loss of my freedom.  Not that I really feel like going anywhere, but I can't drive while I am medicated. 

And as if that wasn't bad enough, I am beginning to get the "radiation sunburn" that I have been warned about.  Now to be honest, I am so fair and pink that I look sunburned 90 percent of the time anyway.  The skin on my face and my neck is getting red and itchy, especially around the scar where my lymph nodes were removed.  The only thing I am allowed to use on my skin is aloe vera gel, which seems to offer some relief on my face.  Treating my neck is complicated by the fact that I still have my trach, which means I still have my trach collar.  (This is the same collar that the six year old is convinced is holding my head on to my body...he was in the room the other day when Steve was changing the collar and said "Mommy, hold on tight, I don't want your head to fall off!") 

And again, as if that wasn't enough, I have begun to lose my hair.  They say I will only lose the hair in back, but I'm not sure exactly what that means.  Even though I knew it was coming, it was surprising to run my fingers through my hair and come away with clumps.  Of course, my hair being so thick, you really can't tell yet.  Honestly, in the grand scheme of things, I could really care less about this one.  It doesn't hurt so it doesn't bother me.  Eventually it will grow back and that won't hurt either.  I like things that don't hurt.

I have tried to explain to the kids that I am getting medicine from a machine, which of course that middle child of mine thought was the coolest thing he had ever heard.  (Those of you who know him well will appreciate that, those that don't should know that this is a child obsessed with machines of all kinds)  I took pictures of the machine to share with them and thought that I would share them here too.  I know that before I started this, I had no idea what a radiation machine looked like.  Not that I think I ever really thought about it, I had no reason to!

I lay on the table, mask attached, and they roll the table under the giant machine.  It looks very high, but they raise the table so that the machine and I are staring each other in the face.

Once I am in position, the machine rotates around me, shooting laser beams of  radiation, for about 15 minutes.  It is  actually quite fascinating, especially when you aren't laying on the table.