Monday, April 27, 2015

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'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, 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,

Thursday, April 16, 2015

Letting go of the other shoe

This has been an incredibly busy week, by my current standards. And by busy, I mean that I had three appointments. The first was with my plastic surgeon, who was all smiles when he saw me. Finally, he could see my face...and I was smiling. The only unhappy moment was when he told me that the infernal itch in my arm, the one I can definitely feel, but can't even begin to reach, may last for up to a year. Seriously? A year? Thank goodness it comes and goes, if I had it continuously for the next year, I might lose my mind, or whatever is left of it. The second appointment was the big one, the dental evaluation. I had spoken to many of you about this and about my fears and trepidation going into this appointment. The dental eval is to figure out if you need any teeth taken out before they completely irradiate your face. The issue is that because the irradiated jawbone might not heal later, once radiation happens, you can never have another tooth pulled without running the risk of losing your jawbone to infection. Sounds fun, right? And given my history with my teeth (thanks Dad!), I was pretty certain I was going to need some teeth pulled. Then I started reading the cancer boards...not always a good idea. These boards are filled with truly amazing, inspirational people who are fighting or have already fought my war. They have walked a mile in my shoes, and so I look to them for wisdom and guidance. Many, many of them had all of their teeth pulled before they started radiation and are now living with full sets of dentures. When I read that, I started to panic a little. I mean sure, it would be great to get to pick my perfect smile, but that seems a little extreme. Other people who did not have their teeth pulled prior to radiation told horror stories about their teeth just randomly breaking off, two or more years post radiation. Ah, radiation, the gift that keeps on giving. Those stories threw me into even more of a panic. So now, I was faced with two possibilities (because there couldn't possibly be any other): have all my teeth pulled pre-radiation and deal with dentures for the rest of my life, or don't have them pulled and wait for the other shoe to drop. Neither seemed like a great choice. Enter the dentist, not my regular dentist, but one that Kaiser is contracted with to clear folks for radiation. A dentist a very long way from my house. After a panorex and a cleaning by one very freaked out dental hygienist (for an office that specializes in people with head and neck cancers, she didn't seem to ever have seen a tongue like mine or know what to do with me and my trach!), the dentist determined that I did not need to have any teeth pulled. We brought up the concerns about losing my teeth later, but he said that if I am extra hyper vigilant about taking care of my teeth, I should be fine. I sure hope so! Then came my most favoritest part of the appointment: I had to do impressions to fit me with my fluoride trays. You would think with all the advances in technology, they could find a better way to map your mouth than filling a huge metal, gag inducing tray with thick goop, choking you with it, telling you not to move for two minutes, then violently ripping the now dried goop off your teeth. They were only able to get an impression of my top teeth, my tongue was just too big and in the way to get that gigantic tray over my bottom teeth. So, a few hours after we arrived, we left there with one fluoride tray and instructions on how to use it. The instructions actually say "Fluoride stents should be used daily and forever." The fluoride, in addition to flossing, using the Waterpic, brushing, and various rinses throughout the day, is what is going to keep my teeth healthy, daily and forever. As we headed toward home, I wasn't sure how I was feeling. I was relieved but scared at the same time. All these what if's were swirling around in my head. Luckily, my hero of a husband, who is used to talking me down from the ledge and putting the brakes on the crazy train, said this to me: "Whatever happens, we will deal with it WHEN IT HAPPENS." When it happens, novel concept. So as we drove, I began to let it go (those of you with young children, or just Disney fans in general, you may begin singing now. Those of you who don't know what I'm talking about, lucky you!) I stopped waiting for that other shoe to drop...I can't worry about something that MIGHT happen two or three or ten years down the road. Honestly, I have plenty to deal with right now, in this moment. Beyond just the cancer and the radiation and all the things that go along with that, I have three kids to raise. I have a tween AND a three year old (some overlapping behaviors there!) plus a sensitive six year old in the middle. I simply cannot, and will not (from now on) live my life afraid of the future. So there it is, I have let go of the other shoe. As opposed to finding the other shoe, which is a game we play every morning as the kids are scrambling to get out the front door. (Honestly, where do those shoes go? Do they just wander aimlessly around the house in the middle of the night, looking for the best hiding place? They are never, ever where we expect to find them. But I digress...} The last appointment this week was with my surgeon, a man I have seen religiously every two weeks since my initial surgery. The most notable thing about this appointment, other than the fact that he did not stick a scope up my nose and down my throat (yay me!), was that I do not need another appointment with him until I am finished with radiation. Wow! I feel like I graduated! He did explain what will happen next, on his end of the treatment plan. Three months post radiation, he will order scans to make sure there is no more cancer (my new birthday!) and to use as a baseline. I will continue to see him throughout the year, but then I will have scans again at one and two years. He told us that if this cancer is going to recur (no thank you), there is an 80% chance it will happen in the first two years. Really, I'll take a pass. Again, not going to worry about things that I have absolutely no control over. There is that word...control. I have a whole lot of thoughts about this subject, but this has already turned into a long post, so I think I will put that on the back burner for a while. The next major milestone comes Monday, when I go to my planning appointment for radation. Treatment should start about two weeks after that. I'm sure I will have a lot to say on that subject. But for now... Sparkles and love to you all, Gayle

Friday, April 10, 2015

Oral Cancer Awareness

April is Oral Cancer Awareness timely for me!  I am sharing this with you because I want every single one of you reading this to keep oral cancer in mind the next time you go to the dentist.  If your dentist doesn't already do a screening for you, make sure you ask them to.  It takes less than five minutes and it could save your life.  At the very least, it will give you peace of mind.  Make sure they are thorough...that means not just a quick visual check but actually picking up your tongue and looking for anything that might be suspect.  The earlier the cancer is detected, the better the outcome. 

Busy moms and dads out there...this message is for you.  If something hurts, make an appointment, see your doctor or your dentist.   Don't wait!  It doesn't take long for one rogue cell to grow into full blown cancer.  In my case, it was really just a couple of months, only I didn't know it was cancer because even though I had a sore in my mouth, I didn't do anything about it.  I was too busy, the kids needed me, work was crazy, and so on and so on and so on.  By the time I finally talked to my dentist about why my tongue hurt so much, it was already stage 4.  That little sore on my tongue first appeared right at the beginning of September and I was officially diagnosed the week after Thanksgiving.  I can't help but wonder, if I had gone in when that one little spot first appeared, how different my treatment might have been.  I'm sure my kids would have preferred that I take one afternoon off to get it looked at as opposed to 15 days in the hospital away from them.  If only I had taken a day off of work...I wouldn't be taking a year off of work.  You see what I'm getting at.

I didn't really plan on being such a downer...I really just don't want anyone else out there to have to do what I am doing.  Truly, it is no fun.  If just one person asks their dentist for a screening because they read this, I will be so, so happy.

One more quick thought for all my friends who smoke...STOP IT this instant!!!  You already know all the statistics and how bad it is for you.  I am not and never have been a smoker, but I am an anomaly with this diagnosis.  If you are a smoker, your oral cancer risk is so high.  Don't do this to yourself, please, please, please.  Thank you, that is all.

Sparkles and love to you all,

Wednesday, April 8, 2015

Technology Fail, User Error Detected

Over the course of the last week, a number of people have expressed surprise that I am able to eat a little bit and I couldn't figure out why the surprise, I mean after all, I had a whole post about it right here on this blog.  So I checked the blog...and to my shock and surprise, no post!  I was sure there was a problem with the website or the internet was broken, or something, but no, turns out, it was me.  Yep, user error...I wrote a great post after my last appointment with the surgeon, all about how I was cleared to eat soft foods...and then I neglected to publish it!  Worse than that, I somehow managed to delete it while simultaneously not posting.  I think I will blame it on the cancer...because from now on anything that goes wrong is the cancer's fault!  I promise to try to be more vigilant about which buttons I push.  Save and publish, save and publish, save and publish.

Okay, moving on.  The past three weeks, since my last surgery, have been pretty awesome.  This is truly the best I have felt in months.  I am trying to make the most of this time.  I know once I start radiation, life will make a dramatic shift.  Feeling good is actually the reason I haven't posted much.  Seriously, I am just too busy to sit down at the computer.  I have been out and about, running errands, playing Mom taxi, organizing things around the house.  I almost feel like the old me, except with a trach, a feeding tube, and much more time on my hands than usual.  We have been in this house for almost a year and for much of that time, our combined office/craft room space has simply been a holding room for other things.  At one point, I think there were more than 50 boxes stacked in this space.  It isn't that big a space!  So I set a April 23rd, I want to have this room completely organized and ready to be used.  Why April 23rd?  Simple...April 24th is our one year anniversary of moving into the house and I want to be able to say that it took me less than a year to get the craft room done.  Bragging rights and all that.  (We aren't going to mention the boxes and boxes of pictures stacked in the back of the playroom or the nightmare that is the's tough to combine two households!!!)

The big news from the post that I deleted instead of publishing was my reintroduction to the world of food.  I was so excited when I passed my swallow test and the doc declared me ready for (soft) food.  My back teeth still don't touch, so I am limited to things I don't have to chew, but I am getting really creative!  I started with pudding and mashed potatoes (yes, in that order!) and have worked my way up to scrambled eggs with really, really finely chopped up turkey and cheese and even very soft matzah brei.  And I discovered that matzah balls are the perfect consistency for life without chewing!  I just couldn't miss all my Passover treats! 

Yesterday was my third appointment with the Radiation Oncologist.  The first time I saw her was the day before my first surgery, in order to confirm that surgery and then radiation was the right path.  The second time I saw her was the beginning of February, when she was completely shocked and dismayed to see how gigantic my tongue still was and to give me an overwhelming amount of information about the radiation process.  The appointment yesterday was also filled with an overwhelming amount of information, but at least this time I was prepared for it, having done a lot of reading.  My RO is very sweet, very polite, but direct.  She didn't say it exactly this way (I mentioned that she was polite, right?) but she basically told me that the next several months are going to SUCK!  We talked about the process, side effects, future implications, and so on and so forth.  I will get into all that at a later time.  Right now I am burying my head in the sand and not quite ready to face all that reality. 

I think that is enough updating for now.  I've got to get back to work on the craft room...April 23rd is approaching fast!

Sparkles and love to you all,