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

Planning is not as simple as it sounds.

I have started this post, restarted, walked away, started again, thought it out in my head, procrastinated, just never found the time to sit down and actually write it. And I don't know why, except that we all know procrastination is (or should have been) my middle name. Wait, no, I wasn't procrastinating...I was busy! Busy feels so good after all these months of laying around not being busy at all. I have learned that when you aren't busy, when there is no to-do list, the days are really, really, really long. Did I say really? But the last few weeks, I have been blessedly, beautifully busy. Busy being a mom (yeah, yeah, a dance mom...but not like on that show!! Well, mostly!) and a friend and a wife and a get things done, chore doing, shopping, contributing member of society. Every time I say that I hate just laying around doing nothing, someone always says "You've earned that time" or "You are healing" or "Enjoy it, it won't last." I'm sure that is all true. Doesn't matter. I still hate laying around doing nothing. Okay, once again I have veered far away from the original intent of this post. I'm so glad you are all along for this ride through my stream of consciousness...bear with me!

So last week, last Monday to be exact, Steve and I trekked out to Ontario to the radiation facility where I will be receiving my treatments. This facility is about half an hour away from home with no traffic, potentially hours with traffic (life in Southern California.) Kaiser is building a new facility about ten minutes from our house, but it isn't opening until August. So these treks out to Ontario are about to become a part of my daily routine (hopefully some of you will be joining me, shameless begging...I'm going to need some rides. As soon as I have a schedule I will let you know so you can sign up for my Radiation Chauffeur Service! Thanks ya'll...back to my regularly scheduled post...)

We have been to this building a few times before to meet with the Radiation Oncologist, but this was the first time we were coming to actually deal with the radiation beast itself. Well, almost. This was my planning appointment. Great! I'm a planner. Even though I knew better, I had this vision of people sitting around with their calendars open (okay, totally old school, I know, but it's the way my brain works) trying to find time slots that worked for all of us. Nope. Not even remotely close. What it did involve was the making of my radiation mask, scans, and stickers.

Let's start with the mask. Picture a large white tennis racket, no handle, with the strings of the racket pulled closely together. The tech, who has a much more impressive title than tech, which I can't for the life of me remember, was sweet and gentle and soft spoken, for someone who was going to wrap a hot tennis racket around my face and strap me to the table. Ouch...that sounds so violent! She truly was very sweet and was trying very hard to keep me calm. Have I mentioned yet that I took Ativan before this appointment? That was one of the crazy making drugs I took while in the hospital and I vowed to stay away from it as much as I could, but I think this exercise demanded some anxiety relief. Anyway, as I was trying to make myself comfortable on the CAT scan bed, she was dipping this mask form into super hot water to soften the mesh. When it was softened, she dried it a little and then positioned it over my face.  She slowly pressed it down over me, smoothing and stretching the mesh over my features. Yes, it was as bad as it sounds, thank you for asking.   Not the first time in this journey, I was actually thankful that I am almost completely blind without my glasses. It was a good thing not to be able to see what was going on around me. I closed my eyes and just kept telling myself to breathe. In and out. In and out.

What seemed like an eternity but in reality was only about two minutes was all it took for the mesh to harden into a white mesh cast of my face. Done, right? Again, nope. Not even remotely close. My kind and gentle tech then quietly began attaching the mask, with my head in it, to the table. The goal of this is for me to be immobilized for the duration of the radiation. My personal goal is not to have a total panic attack when I realize that I am bolted to the table. Breathing, breathing. The tech is quietly talking to me, reassuring me that there will always be someone watching me, all I have to do is wave my hand and they will come and release me, but that this is a necessary step. She begins making marks on the mask and places stickers, one on my chest and one on each side of my abdomen, that she also marks. This is all to line up the radiation. After a few minutes, she is done and I am ready to be scanned. She leaves the room for a few minutes, reminding me again that she is just on the other side of the wall, that she can see me and hear me and if I need her, she will be at my side in a heartbeat. While reassuring, it still does not override the fact that there is a mesh mask holding me captive. If ever there was a moment when it all hit me, it was this one. This is real, people. We are not pretending anymore. My claustrophobia and I have spent an entire lifetime avoiding situations like this, so what the hell am I doing being strapped down to a table by my head? Suddenly the table starts to move backwards and I am being scanned and measured. She comes over the speaker to tell me it is almost over, which instantly becomes my new mantra...it's almost over, it's almost over, I think I can, I think I can, I think I can. And then it is over and she is releasing me from my mask and I can sit up and I am free.  The whole process, start to finish took about 20 minutes.  Perhaps the longest 20 minutes of my young (!) life!

That was my planning appointment...I go again at the end of this week to do a "dry run" of the radiation, to make sure everything is programmed correctly and again I will get to wear my new fashion accessory. I will try to take a picture of it this Friday, so you can really have an idea of what I am talking about. If you just can't wait or you just like giving yourself nightmares, you can google "radiation mask" but be warned...the pictures are almost as scary as circus clowns!  If all goes well at the dry run, we will schedule out my next 30 appointments...when I will actually be receiving the radiation. I am not looking forward to this all, but the sooner I start, the sooner I finish.

Oh, I almost forgot...I also get my tattoos on Friday.  What my understanding is, and this could be completely false, is that where my stickers are now, they will place small dots of ink to mark the spots where the radiation machines need to line up.  Hopefully those dots will be slightly less conspicuous than this:

 

 

I have to keep the stickers on until my appointment on Friday, when I will have had them for about two weeks.  Now that I am used to them, except when they itch, I don't even notice them anymore.  It sort of reminds me of the days when one of my kids would put a sticker on my shirt and I would forget about it and then go out in public and not be able to figure out why people were looking at me funny.  And then I would get home and look in the mirror and realize there was a princess or a robot sticker firmly attached to my chest.   Sort of the same thing, dontcha think?



 

 

If you are still reading this, congrats...you have made it to the end of this post!  I keep telling myself I am going to be succinct, but let's be honest, that is just not going to happen, now is it? 

 

 

Wishing you a beautiful Monday!

Sparkles and love to you all,

 

Gayle