It begins…

Yesterday was hard for me for a number of reasons: cruddy things kept happening like the dog running away (don’t worry, he’s back!!) and sticking my hand right in the middle of a poopy diaper. Ugghhh. But more than that, it was the appointment I’ve been dreading since it was scheduled last Wednesday – my radiation simulation. I am going to explain this process for those of you that don’t know what it’s about. But let me tell ya, it was a long process (almost 4 hours!!!) and very difficult for me personally (I cried the whole way home. The whole hour and 20 min. Like, blubbering. Poor Eric!).

Our Philly adventure began with a surprise (for them) appointment in my surgeon’s office to have them look at my leg. Because it’s full of liquid. It’s pretty nasty actually, but there is a balloon of fluid under my scar on my leg (which is 17cm long, not sure how long that is in inches, sorry. Dang metric system!). So since we were an hour early for my dental appointment, I was the person that annoys everyone and popped into my surgeon’s office to see if they’d look at it. Hey, they coulda said no!  Luckily, they didn’t and they said it looks fine and should go down soon. Whew.

An interesting fact about radiation in head and neck cancers is that it can cause bone necrosis, which means the bone in your jaw literally dying. Ok eww. I really don’t want that. So the oral surgeon just got xrays and checked my mouth to make sure I didn’t need any extractions before my radiation starts. Which I didn’t, so that’s good! So all I have to do is take excellent care of my teeth from now til forever so that I never need an extraction. She stressed this a lot – if I need an extraction ever I’m in big trouble. So I gotta keep brushing, start flossing (yeah, yeah, you know you don’t do it either), and I will forever have to give myself flouride treatments daily. Oh, and I can’t drink a lot of juices or coffee, I can a little, but radiation causes (permanent?) dry mouth so I gots to be sippin water pretty much constantly. Excellent. As much as I didn’t like hearing about dry mouth and bone death, I’m happy to say that was the best dental appointent I’ve ever had! (cause they didn’t do anything….)

On to the radiation simulation! We headed down to the floor where they do radiation and I have to say this is where the day really turns sour. Now my radiation oncologist and all the techs and nurses were great, awesome actually, but I spent that 4 hours fighting back tears (but I didn’t cry! And I didn’t need a sedative! Winning!)

Basically I needed a mask made and CT scans done to map out my head and neck area. The CT scans are so that they could map out the area and make sure radiation is delivered to the right place. And a mask because they are sadistic and mean. Jk jk! They were all super nice! The mask is so I can’t move during treatments. At. All. So a picture is worth a thousand words, right? Here’s what it looks like:

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It is fitted to your face exactly. It’s pretty wild actually. They take this soft stretchy material and lower it over your face and they pull it all the way down so that they can connect it to the table you’re laying on. Then they rub their hands all over it so that it fits your face exactly. It feels really neat at first actually. This pic isn’t of mine, it’s just one I found on the internet. But mine legit looks like me. I get to keep it when I’m done, so I’m probably gonna use it to freak people out. But anyway, here is a pic of what someone looks like during treatment. When they are bolted to the table. Oh yes, you really are. And round about 45 minutes of wearing that sucker, it starts to hurt!!

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And since my doctor did not yet know which treatment I’m getting (IMRT or proton therapy), I got not one, but TWO masks made! Oh joy!! So it was the whoooole process (CT scans and all) for both masks. Seriously, I hope my kids don’t inherit my bad luck!! It also took longer because they had to make a bollus (bolus? bolice?) built into each mask to fully cover the (giant) scar on my face and neck. Here’s some of the sharpie on me! I felt like an art project towards the end, the pic doesn’t fully capture it

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Also, to make sure they have me aligned perfectly each time, they tattooed me! And it is permanent. I feel so hardcore. Check it out –

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Don’t be jealous, I’m sure some amazing tattoo artist somewhere could recreate it for you 😉 If you can’t see it, it’s right at the end of my finger haha. And here’s my head after being in the mask for a while the second time around:

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So it was a long process and I probably didn’t explain it well but it was a lot of just laying on the cold table in the mask. Luckily, I won’t have to be in it that long for treatments, which should start in a week or two! Here we go!

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12 thoughts on “It begins…

  1. Kim – you are amazing! God is so going to bless you and your family for the awesome testimony you are sharing with others. What an inspiration you are to me – my biggest issue is getting old!!!!!!!

  2. I love you so much ,Kim—and with tears streaming down my face, can I just say how sorry I am that you have to go through all of this. i know i could give you some “Christian cliche” right now—and it would be true probably, but sometimes I think you just need to know that someone is crying with you—that would be me. Prayers and hugs—lots of both—Pam

  3. There is not one picture here that wouldn’t take away your beauty (inside and out). And your complete awesomeness! I, do, however, wish I could be doing some of this for you!!

  4. Hannibal Lechter or Pinnochio in that second photo 🙂 With all these photos you’ve established a precedent now in your blogs, we expect videos next time and then 3D images next. Thank you so much for sharing, we continue to pray fervently for you , praying that God will intervene and provide you the best treatment option.

    1 hr 20 minutes, gotta be a Schuykill land speed record
    blessings

    1. Hahah!! I know right?? It’s pretty freaky. I’m glad I’m not a sociopath cuz then I’d probably like it! I figure I’ll let people get the 4d experience and just start bringing tour groups along and blabbing my feelings the whole time – then I don’t even need a blog!!! Hahha

  5. Kim- I want to copy this post and give it to all my patients that we treat! its a great explanation of how we treat head and necks. LOL I love the waffle head, that’s what we call our patients after their mask is off..it all in fun 🙂 I love you and I will be involved as much as you need me too, Love you!!!

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