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

A new week, a fresh start

I wish I could say that the last few weeks had been a blur, that time is just flying by.  But that would be a bald-faced lie.  My days are long and pretty tedious, but they were tolerable, as long as my tongue was shrinking and I was making progress toward recovery, I could handle it.  And I was making progress.  It was slow, but it was there.  And then, like someone grabbing the needle and scratching it across a record, it all came to a grinding, deafening halt. 

About two weeks ago, my tongue started to swell again.  I didn't think much about it, it always swelled a little bit in the evening, the result of too much talking, I thought.  It was an annoying fact of my life, but it generally went back down in the morning.  And then it didn't.  It stayed swollen and grew more and more until I was back to having this huge, unwieldy, uncomfortable piece of meat hanging out of my mouth.  And the pain that had moved away, came creeping back in, slowly at first, then ever increasing, until some moments, I felt like, feel like, a freight train is roaring through my jaw, my neck, my ear.  I was so excited to be off the pain meds during the day, I was beginning to feel like me again.  Once again, with the swelling and the pain, I feel somewhat like an imposter in my life, hanging out at the edges, not really taking part. 

My surgeon is not happy with this turn of events.  So, back to the drawing table we go, or in this case, the operating room.  My surgical team will reunite this Thursday to debulk my tongue.  They will go in and take out some of the excess tissue that is in there (ah yes, even my tongue is chunky. I have been told that because of my extra "padding", when they did the flap, the layer of fat was thicker than expected and they could only shave off so much without risking the integrity of the flap.)  He has assured me that this is relatively minor compared to what I have already been through  (My brother's response to that claim?  Only an organ transplant wouldn't be minor compared to what I have already been through!) and that it might even be outpatient or at most one night in the hospital.  I don't kid myself into believing that it would actually be outpatient, but hopefully I will manage to break out after only one night.  We all know how much I loved being in the hospital last time!

Spitballs!  I am feeling frustrated and discouraged and more than a little nervous.  I am ready for something to go right in this process, to be easy.  I guess that is my lesson...there is no easy when it comes to cancer.  Expect the worst and you won't be disappointed, isn't that how the saying goes?  It goes against my nature to think like that though, so I have to just keep putting my faith in the process.  This surgery has to work, my tongue will get smaller, I will be able to move on to the next set of challenges.

My one sparkle for today...I have been walking in the mornings after I do my first feeding and before it gets too hot (you know, because it is still winter and all!)  We have been in this house almost a year, but I am still exploring the neighborhood.  Today I walked a street I have only driven down before.  Driving, I wasn't able to appreciate the work that has been put in to many of these homes, to see the love and care in the landscaping.  That is one of the gifts cancer has given me...I have been forced to slow down, to look around and appreciate my surroundings, to smell the flowers and count the lizards darting across the sidewalk. 

Love to you all,
Gayle

Introducing Sparkles and Spitballs

Well, here it is.  So many people have told me that I need to be writing about my experiences, I finally decided to dip my toes in the water.  I know it doesn't look like much yet, but as I learn more about how to configure things, I will get it looking more like me.

For those of you joining my from Caring Bridge, I will continue to post there as well.  I figure Caring Bridge will be where I let you know the news of the day, if there is any.  This site is more for me,  sort of a cathartic journal, allowing me to really get at what it is like to have oral cancer, tongue cancer specifically, and be a mom and a wife, and try to continue living my life with some semblance of normalcy.  I predict that this will be pretty no-holds barred, so if you are squeamish or get offended easily, this might not be the blog for you.  I intend for this to be a truly honest account of my life right now...and it is can be pretty intense and offensive.  Just keeping it real!

So why the name Sparkles and Spitballs?  Sparkles was the easy part.  Anyone who knows me knows my love for all things glittery and shiny.  When I was first diagnosed, I asked people to send prayers, love, and sparkles.  Spitballs came later.  Since my surgery, I have been almost a continuous drool factory.  Pretty!  In the hospital they used the word "secretions" but that doesn't sound much like a kindergarten teacher, does it?  My life since the surgery has been all about these secretions...too much, not enough, too thin, too thick.  Honestly, I have had more conversations about saliva in the last eleven weeks than I think I have had in all my 42 years put together.  So, spitballs it is!

Sparkles and Spitballs has another meaning to me as well.  Recovery from this surgery has been quite challenging.  I have begun to think of my days in term of good or bad, or in this case, Sparkles or Spitballs!  The goal is to have more sparkle days than spitball days and thankfully, the tide is beginning to turn.  Many people talk about blessings and challenges...this is just my version.

As I was thinking about starting this blog, I realized that the name has a more far reaching meaning as well.  Eventually, when my whole existence is no longer focused on the foe that is this cancer, I hope that this blog will serve as a record of all the happenings here in Lipson Land.  So, keeping that in mind, I am thinking that Sparkles represents that sparkly, shiny, glittery girl of ours, while Spitballs represents our two amazingly different, yet equally rough and tumble, boys.

So that's it....the first blog post.  Soon I will sit down and tell the whole story of my life, or at least my life since cancer became a part of it.

Love to you all,
Gayle