Friday, March 20, 2015

A Fresh Perspective

I started this blog post on Wednesday night, the night before my surgery.  Technically, I guess I started it Thursday morning, because it was about 3a.m.  It was a very different tone than I am finishing the post in...what a difference a day makes.

That morning, I was in despair.  I had been awake most of the night, just couldn't turn off my brain.  I desperately did not want to have this surgery.  I was feeling frustrated and angry and couldn't understand why nothing was working.  I was following my doctor's directions to the letter and yet I was still making virtually no progress, and in fact, was backsliding.  I was sure that my one night in the hospital was going to turn into three or four and I just wasn't sure I could face that long a stay again.  I was certain that this surgery wasn't going to work either or that they were going to find something awful or that I was just going to be stuck like this forever.  I had such a bad reaction to the anesthesia after my first surgery, losing that entire week, I just didn't really want to go under again.  But what choice did I have?  I felt like I was stuck...damned if I do, really damned if I don't.

Fast forward to mid-day Thursday, waking up after surgery.  What a difference a few hours made!  The first difference...I was awake!  And lucid!  And could completely understand what was going on.  My surgeon came in to talk to me and he was thrilled.  They shaved off about half of the flap and made fresh edges on my tongue to connect the flap to.  He did not see any other evidence of cancer but sent everything off to pathology just to be sure.  I had a bite block in which was causing some discomfort, but in general, I could feel that everything was smaller.  I was already feeling better.

After many, many hours in recovery, they finally moved me to ICU.  Technically I wasn't an ICU patient, but there were no other beds.  Steve laughed when he found out I was being moved to room 222...that is the exact room where I spent my first week in the hospital.  I so lucked out.  My nurse, Ryan, was a godsend.  He was organized and patient and remembered me from before.  He was more than willing to stop what he was doing and read my notes and comply with anything he could.  And he was completely focused on pain relief, making sure that we stayed ahead of any pain I might have.  I can't begin to say enough about having a good nurse.  I have a true new appreciation for the entire profession.  I learned the first time around that a good nurse can make your day, a bad nurse makes for a very, very long 12 hours.  Dr. Shibuya came around in the evening and removed the bite block and for the first time in three months, I could pull my tongue back into my mouth, almost.  My job was to continue working on it.  Happily!!!

Fast forward to this morning.  I slept some during the night..woohoo!  It has been so difficult not sleeping, that even getting a few hours was amazing.  Again, kudos to Nurse Ryan.  He guarded my door and my sleep and wouldn't let anybody in...until the vampire came at 4:45.  He has no control over that...they make the rounds to draw blood so the doctors have results before they round in the morning. 

Apparently, I took my assignment very seriously.  During the night, I worked to push my tongue in more and by the time Steve arrived, he was amazed to see that not only could I get it all the way in my mouth, but even behind my teeth.  My teeth!  I hadn't seen my bottom teeth in 12 weeks, and had only seen my top teeth when I could manage to prop my mouth open wide.  Warning...gross detail follows--can you imagine not brushing your teeth for three months?  So incredibly icky!!!  The very first thing I did when I got home was to head to the bathroom, grab a teeny tiny toothbrush and a dab of gentle toothepaste and softly scrub my teeth.  Better, not great yet, but they will get there!

The resident came by, looked me over, and declared that I would be going home today.  I wanted to jump out of the bed and hug her!  By three o'clock, my angelic day nurse Ruby, had my discharge papers ready to go, had me unplugged from all my tubes and wires, and had a wheelchair waiting to carry me to the car.  I was free! 

Soon after arriving home, Steve went to go pick up the kiddos from school.  I sat outside to await their arrival.  As soon as they pulled up and saw me, there were huge smiles all around!  The littlest one said, "Mommy, your face is back!"  Each one came and gave me the softest, gentlest kiss.  My heart just soared.  One of the hardest parts of these last three months has been the fact that I couldn't kiss my kids.  No good morning kisses, no good night kisses, no comforting I'm sorry you got hurt kisses.  I intend on making up for that...I can't wait to love all over them! 

In the coming days, I am going to work up the nerve to post some pictures of this journey.  The pictures aren't pretty and it isn't going to be easy, but to be honest and true to this story, I think people need to see the visuals.  Then you will truly appreciate how far I have come and how difficult this cancer is to treat.

Thank you for all your continuing love and support.  I have been reading all your comments here, on Caring Bridge, Facebook, and via text and email.  Know that I am floating on the clouds of your words, they help more than you could ever know!  Thank you for the cards that come via snail mail, the surprise gifts, the drop-offs of boxes of books.  My heart is more than overflowing with your love!

Sparkles and love to you all,
Gayle

Monday, March 16, 2015

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

Tuesday, March 10, 2015

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