Sunday, May 24, 2015

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.


Friday, May 15, 2015

Seven Down, Twenty Three to Go

Wow.  Seven radiation treatments done already. I have to say, certain parts are getting easier.  I don't dread the mask (as much) now that I know what it is like.  Now, I'm not volunteering to give up my Ativan anytime soon, but the mask part is definitely easier.

I am starting to feel the effects of the radiation.  I thought I had more time, everyone told me two weeks before you see any side effects.  Apparently I am an overachiever, because I started feeling fatigued around day four.  I wasn't really surprised, as the fatigue that always came with an RA flare would hit me hard too.

The big one so far, one I knew was coming but mentally wasn't completely prepared for, is that I have lost my sense of taste.  Not the sense of taste that would keep me from going out in yoga pants...I lost that somewhere between the first and second kid.  No, my actual sense of taste.  I can no longer taste (almost anything) at all.  I realized it on day five when the meatballs that Steve and the girl said were so spicy, had absolutely no taste to me at all.  Since then I have been experimenting with various foods, seeing if there is anything left for me at all.  It seems like I can taste cold better than hot, and certain fruits.  That's about it.  That doesn't leave me with a lot.  I do have to say that I feel like this sort of took the wind out of my sails.  I have been enjoying food so much for the last two months and suddenly, it really holds very little interest for me.  Today I actually used my feeding tube for food, not just medicine, for the first time in seven weeks.  I expect that I will go back to the majority of my feedings through the tube in the next few days.  It just isn't any fun to eat if you can't taste it!  Once radiation is over,  I will start experimenting again, hoping that I get something, anything back.  Keeping my fingers crossed that I can be a happy foodie again someday.

I think that's about it for me today.  I am definitely feeling the effects tonight, just completely exhausted and I need to save my energy for my kiddos. 

Sparkles and love to you all,
Gayle

Friday, May 8, 2015

Radiation Days 1 and 2

So, I think for everyone dealing with an illness or some other life changing event, there is that one moment where it really becomes real.  When I was diagnosed, the word cancer sort of floated around in the air, but my reality was all about the practicality of what needed to happen.  Especially once I found out that my cancer was curable, that I wasn't looking down the barrel of a death sentence, my world became more about appointments and surgery and treatment plans and less about the cancer itself.  I even felt weird saying I had cancer, because I didn't feel sick, didn't feel like it was real.  I kept waiting for that moment when it would hit me...

You would think that moment would have been when I had surgery, when they cut out half of my tongue, when they cut my neck open almost from ear to ear to take out my lymph nodes.  Or when I came home and couldn't talk to my babies.  Or when they were fitting me for my radiation mask of doom.  Or any of the other little moments that have happened since December 1 when I was told, point blank, that I had cancer on my tongue.

Maybe I'm a slow learner, but truly, my moment didn't happen until yesterday, Radiation Day 1.  As they started clipping my mask down, immobilizing my head, I was listening carefully to the sound of those clips.  It occurred to me, as the last one was clipped into place...this is what cancer sounds like.  No one else would hear that sound, unless they had some sort of head or neck cancer that required radiation.  I suddenly felt very alone, even though there were two radiation techs still in the room with me.  Strangely, I was very calm.  (That may have been the Ativan.)  The radiation tech patted me on the leg, made sure I was okay, and left the room.  I was alone and I had cancer.  Since my surgery, I have had very little alone time, and absolutely no time when I didn't have something to distract me--my phone or the computer, a project to work on, trashy daytime t.v., even a book or a magazine.  In this moment, I became very aware that I was alone with only me and my only distraction was whatever I could conjure up in my mind.  In today's world, we have very few, almost no opportunities to shut everything else out and just be alone.  Now I was being forced into aloneness, with no other choice but to entertain myself.

I am on a couple of different cancer message boards and groups and prior to this appointment, I asked for advice on how to survive being strapped to the table.  The answers ranged from praying to sleeping (sleeping, really?) to meditating to total denial that it was even happening (that person must have a better imagination than I do!)  As the machine started to rotate around me, I found my mind wandering all over the place.  I tried just focusing on my happy place and the kid's faces, but that only lasted a few seconds at a time.  I managed to spend time thinking about all the little things I want to get done around the house, reminding myself to add a multitude of appointments and rehearsals and other events to the calendar, smiling as I started counting all the blessings in my life.  Well...smiling on the inside...not much room in the mask for expressing emotions.

So I made it through Day 1, just like you all assured me I would.  I didn't run away and hide, which is what I really wanted to do.  Instead, I pulled up my big girl panties, took my Ativan, and faced the treatment head on!  (Get it?  Head on?!?)

Today's appointment was a little easier...there was no mention of running away this time (although the thought did briefly cross my mind.)  It was a shorter appointment because they didn't need to do x-rays.  The tech explained that in the first week they take x-rays every other day, and then after that only once a week.  Because they work in millimeters, they need to constantly confirm that they are hitting the right spot.  She was very sweet and even helped me take some pictures of the mask.  I know people have been wondering....

Front View of the Mask of Doom
The black dots around the edges are how they clip the mask to the table.



Side view...imagine that positioned over my face.  
Those little x marks the spot marks are where they shoot me up with laser beams
Now I get two days off to recover and then on Monday I get to start all over again..  Next week my appointments are in the morning, which hopefully will make my days more productive.

I have an assignment for all of you...I have been calling it the Mask of Doom but I think I need an attitude adjustment about this thing.  I tell my girl all the time to choose her tude, now it is my turn to walk the walk.  To really change my tude, the mask needs a new name.  That is where you come in...if you have a suggestion for a more positive name for it, please leave it in the comments section below.   Thank you in advance!

Sparkles and love to you all,
Gayle

Sunday, May 3, 2015

I've got the whole world....

I've got the whole world...on my chest.  Huh?  That is definitely not how the song goes, but let me explain...

I went in on Friday for my "dry run" to check that all the settings are correct on the radiation machine.  I tried everything in my power to avoid going to this appointment, but there was really no getting around it.  I had to go, but I knew it was going to be a challenge because it was going to involve the mask.  Oh that dreaded, infernal mask.  I really, really wish I was being overdramatic when I talk about it, but alas, I am not.  I did take antianxiety meds before I went, and I know that helped, but it didn't stop me from having a moment of sheeer panic as they positioned the mask over my face.  I think the worst part is hearing the sound of it being clipped to the table and knowing I am stuck.  I hate not being in control and in this situation, I could not be more helpless.  I did manage to quell the panic...I kept going to my happy place, trying to be anywhere but on that table.  When the happy place would slip away, I just kept repeating "You can do this" over and over again.  In my head, my voice still sounds like me, while in real life, my voice sounds very strange.  At least to me.  More on that another time.

Eventually, about half an hour later when all the required x-rays were shot and the doctor was satisfied, I was released from hell, I mean, the mask.  The tech assured me that the regular treatments would not be that long with the mask on.  After the first one.  And about every tenth one, when they will need to redo the x-rays to check that the position is still good.  Hopefully by then the mask won't be as bothersome.

Before I got off the table, the tech replaced my positioning sticker (see previous post) with a tattoo.  A teeny, tiny tattoo.  Really it just looks like a freckle slightly darker than the million freckles around it.  This is where the song comes in...

I was at the dance studio yesterday, hanging with the other dance mamas, showing off my new tat. (Because I am so, so tough!)   One of my friends (you know who you are, crazy lady!) looked at the teeny tiny spot and declared that she knew exactly what it was!  It was most obviously a tattoo of the entire Earth...from very, very far away.  Have I mentioned how this mama makes me laugh?  Ever since then, I've had the song "I've got the whole world in my hands" stuck in my head, but, of course, I have to replace "in my hands" with "on my chest."  I love having friends who are just a little twisted, just like me!  I really did try to take a picture of the teeny, tiny Earth to show all of you, but it just doesn't show up well in pictures.  Oh well, you'll just have to use your imaginations.

Today was spent at the last dance competition of the year.  I am so thankful that radiation managed to be pushed off until the girl was done competing.  I start my thirty days of treatment on Thursday and will go through the third week of June.  I am hoping and praying that the side effects take it easy on me, but I am preparing for the worst.  In the meantime, I am going to attempt to keep life as normal as possible with this crazy band of loons I live with.  We are winding down the end of 5th grade and Kindergarten, as well as being in the throes of three and a half.  There is NEVER a dull moment around here!  Thankfully, the kids have all really adapted well to my new reality.  They don't even blink an eye when I have to go clean my trach or I am giving myself meds through my feeding tube.  The littlest one did attempt to "fix" me with his play drill...when he headed for my trach I had to perform some elusive maneuvers to get away, but it was quite amusing to hear him telling his friends at school all about why I need the trach and tube.  He is quite the expert, even telling them "It doesn't hurt Mommy anymore, but it did yesterday."  Everything is yesterday for him, even things happening in the future. 

I think that is about it for today.  It was a long day spent sitting and cheering (okay, I can't actually scream and yell right now, but I did clap loudly!) and I am exhausted. 

Sparkles and love to you all,
Gayle