Fighting Battles

I have been thinking a lot this week about our personal demons.  We all have them.  Alcohol, drugs, pills, food, shopping...we all have something we just can't resist.  I have a friend who is struggling right now, fighting for her life, in fact, trying not to let her demons win.  Unfortunately, I'm afraid she is losing the fight.  I have tried everything I can think of to help her, but ultimately, this is a battle she has to fight on her own.  I feel helpless, watching her world disintegrate and knowing that I can't do a single damn thing.  Her demons have beaten her down, taken away all of her self-worth, humiliated her and left her battered and bruised from the inside out. I wish she knew how important she is to so many people, how many lives she has touched and what a huge hole she will leave if she lets those demons win.  I so desperately hope she can find her fire again, her will to not just live but to live a rich and beautiful and healthy life, one filled with love and happiness, one where she keeps her demons at bay.  A life where she is appreciated and accepted with all her imperfections, not belittled and beaten down, judged and left behind.  I hope she knows that I will always be here, not just me, but an entire army of believers who know that deep down she is a fighter, and as long as she is fighting, we will fight with her.  But we can't swing the first punch or fire the first missile.  She has to do that.  I know she reads my blog, so I hope these words find her, and that she finds the strength to believe in her own strength. 

Before cancer, my personal demon was food.  For years, I have struggled with my weight and my relationship with food.  I always felt like food was the more powerful one in the relationship.  I often found myself powerless to resist.  I regularly overindulged, ate things that I shouldn't, or thought I shouldn't, "cheated" on whatever diet I was currently trying.  I obsessed about the last piece of cake in the fridge or that perfect bite of...whatever.  I went through fast food drive thrus and ate whatever would feed the demon.  I stuffed myself with food that tasted good but had less than zero nutritional value, filled with chemicals and preservatives.   I would make promises to myself and then break them the same day.  I watched the scale go up two pounds, down one, up another three.  The up was always more than the down and some days I felt as if I would never win. 

To be fair, it wasn't all bad.  I mean, a girl had to eat, right?  Food was the one thing that was a constant in my life.  It never disappointed me, it was always there when I needed it, it didn't judge me.  It was there to comfort me when my father died, eased the pain of hormone shots and failed procedures when we were trying to get pregnant, and then celebrated the births of all three children with me.  Food helped me make friends, impress people, get noticed. It was, and still is, a part of every life cycle event, holiday, get together, party, everything.   I collected recipes and cooked, tried to replicate the treats of my childhood, with varying degrees of success, fed my family well.  Food became a part of my soul, a part of my personality. 

And then, cancer came calling.  Eight months ago tomorrow, I had the surgery that would dramatically change my life...and my relationship with food.  I have had ups and downs in terms of eating.  For six weeks or so, after my second surgery, I was able to eat in limited amounts, mostly soft foods or foods I could cut into little tiny baby pieces.  But other than that brief time, my entire sustenance has been food through a tube.  My meals come in little boxes that I pour into a bag and pump into the port in my stomach.  We joke that the boxes say "New, improved taste!" as I press the buttons to start my meal.  Post radiation, I am working on swallowing.  Sips of water mostly, sometimes a smoothie, as there is still too much swelling to try real food.  And it is work.  I have to really concentrate on swallowing so I don't choke.  That makes the idea of eating a whole lot of work.

Surprisingly though, I am still obsessed with food.  I watch the Food Network religiously, still tear recipes out of magazines and pin recipes to boards on Pinterest.  I fantasize about what I am going to cook, to eat, when I am able.  I found that I am not alone.  Many of the head and neck cancer survivors that I talk to have the same obsession, and some of them have not eaten in years.

I think when food and I re-enter our relationship, there will be a new dynamic.  I will not deny myself anything, that has already been done for me, in a torturous way.  I will not feel guilty about eating, but I will appreciate the quality and value of the food.  I will savor bites and let them linger instead of wolfing them down and not even registering a flavor.  I will enjoy my relationship with food again, but I will seek out foods that are healthy and disease fighting, instead of toxic.  And if I slip, that's okay, as long as I enjoyed it.  There is always another meal, another day to live, to eat. 

When I sat down to write today, I didn't think I had much to say.  Guess I was wrong.  Thanks for going on today's journey with me!

Sparkles and love to you all,
Gayle

It Takes A Village

Written Tuesday, July 7

I know I've talked about this before, but today I really need to articulate these feelings.  The saying "It takes a village to raise a child" is being revised in my house.  We now say, "It takes a village to care for a cancer patient."  I am so incredibly blessed to have an amazing village, one that I really didn't know existed before I got sick.  I knew that there were good people in my life, and I knew that if something bad ever happened, that there was a handful of people that I could count on to help out.  What I didn't know, never really expected, and have been overjoyed to learn, is that my handful of people is so, so much bigger than a handful!

As I sit here writing this, it is the first night of dress rehearsal for the girl's dance recital this weekend.  For those of you non-dance moms out there, this entails three very long afternoon/evenings during which we can take pictures and videos (no pics or videos at the actual recital).  It is exhausting, but also really fun to watch.  This is the first time since her first recital in 2006 that I am not in the theater.  Why am I telling you all of this?  Because within an hour of rehearsal starting, I had ten pictures either texted or sent to me via Facebook.  I know there are more coming.  My village of dance mamas is determined not to let me miss out on a moment, and for that, I am so, so thankful.  These are the same moms who have coordinated a schedule to make sure that the girl has not missed a class or an extra rehearsal or any sort of dance related event, many of them going out of their way after a long night of class to bring her home.  And the same moms who were the first to volunteer to drive me to radiation.  And the same moms who brought food, lots and lots of food, to feed my family while I was in the hospital.  They have sewn costumes, done hair and makeup, cheered her on in my place, all the while making sure I had pictures and documentation of all of her accomplishments. 

What is remarkable about this part of my village is that many of these women are not people I knew very well before I got sick.  Sure, we have been couch surfing for years, trading stories and laughs and complaints about our children, but we didn't really know each other.  Except for a few, we didn't socialize outside the studio, except maybe at a birthday party.  But not one of them hesitated.  Not only did they not hesitate, they didn't wait to be asked to help out.  In fact, some of them wouldn't take no for an answer (you know who you are!)  I am, and always will be, eternally grateful.

Another part of my village is the neighborhood of old friends, people who have know me since the way back, who know all the stories.  These are the folks who have kept my spirits up, who don't mind (or at least say they don't mind) when I text them at midnight from the hospital because I am losing my mind or who send me a text or an email or a shout out from Facebookland every single day.  They are the friends whose psychic messages I get loud and clear, the cheerleaders of unwavering faith.  And they are the friends who let me be angry and rail against the world, the universe, G-d, wherever this dreaded disease originated and they don't judge.  They rail with me, are angry with me, and when I don't have the energy, they are angry for me.  And then, they help me to let go of the anger so I can heal.  I don't have to question whether they will be here because I know they are always at my back.  Again, eternally grateful.

Far and away the most constant and enduring part of my village are my family members.  My mother-in-law and sister-in-law took turns coming in from Virginia to hold down the fort at home while Steve and my mom took care of me at the hospital.  Our schedule is not for the faint of heart, but they managed, with the help of other village members, to keep everyone on track and occupied.  My mother spent hours and hours and hours at the hospital and then generously gave up half her room so that I could come home.  For months she shared her space with me and my oh-so-stylish and comfy hospital bed and medical equipment.  As a mother, I know how much it must pain her to see me miserable.  My brother, poor guy, moved cross country (at my insistence), the day after my first surgery, to start a new job.  I know he has hated every minute of being away, but I can feel the love and support from him from all the way from Maryland.  He has kept me on my toes, listened while I complained, and made me laugh, all the while making sure I am keeping it real.  No hiding anything from him.

Of course, the most important members of my village are my husband and those three little bodies (okay, two little bodies and one who has suddenly shot up inches above me).  I am going to save them for my next post...It Takes a Village, Part 2, since this post has gotten awfully long.

Love and sparkles to you all,
Gayle

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.

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

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

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 goal...by 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 garage...it'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,
Gayle