Sunday, November 29, 2015

One Year Ago...

I am struggling to write this post.  I don't know why, but I am.  I have been writing it for weeks, deleting and starting over. Even as I start this on a fresh, clean page, I have another post, almost complete, sitting in my list of drafts.  I guess it is kind of fitting, starting over on a clean page.  I've turned to a clean page in my life as well, starting all over again as a new me, changed in so many ways.

One year ago, my life, my family's life, was turned upside down.  My diagnosis of squamous cell carcinoma of the tongue hit us all hard, each in their own way.  We struggled to understand what this was all going to mean, to figure out what was going to happen.  I read articles and studies, first hand accounts and medical notes, and quickly got overwhelmed by the horror stories and pictures.  I was numb at first, and then I cried, a lot.  But I had Steve to lean on, and all of you, my village, and I started down the path.  One foot in front of the other, one day at a time.  I had my highs and my lows, a lot of lows.  I had absolutely no idea how hard it was going to be. 

I'm not going to revisit or recap all the details of the last year.  I don't need or want to, and I'm sure you don't want to hear all about it again.  It was hard but I made it, we all made it.  A little beaten up and road worn, but we are here.  But things are different now.  Cancer changed me in so many ways.  It changed my physical self and my emotional self, my personality and my identity.  I'd like to think it changed me for the better, the new improved me.  Gayle 2.0

Physically, the changes are obvious and dramatic.  Literally from head to toe.  From cutting my hair short to losing so much weight that even my feet are shrinking.  I have scars that weren't there before, big scars, that in another life I would have tried to hide, but now, I wear with pride.  I earned these scars, I'm going to show them off.  I am wearing a size I haven't worn since my freshman year of college, no longer hiding behind shapeless clothes.  And of course, I have a tongue that doesn't look like anyone else's, one that doesn't work like anyone else's.  I'm learning how to breathe again, how to swallow, how to speak.  I sound different.  Last night Steve was watching an old video of the littlest one.  I was taking the video, so you can hear me, but not see me.  Steve had to ask if that was me talking because that voice doesn't exist anymore.  The voice I hear when I speak is foreign to me, it sounds strange and unfamiliar.  Not bad, just different.

I didn't expect cancer to make me more confident, but it has.  Cancer showed me that I don't back down from a fight, no matter how tough the opponent.  Many people said things to me like "I don't know how you do it" or "I don't know how you keep going" and my answer was always the same.  "I don't have a choice...the alternative sucks."  It gave me the courage to step completely outside my box and start a business.  Before, I never would have tried, too afraid of what people might think if it didn't go well.  Not worried about what I would think of myself, but always concerned with other people's opinions.  Now, I'm proud to say that my opinion matters to me.  Only took me 43 years, but I got there!

Cancer changed my identity.  I have been a teacher for 18 years.  That's a long time.  I think like a teacher, talk like a teacher, hoard like a teacher.  I live and breathe early childhood development and play as work for my kids.  And then with one rogue cell, I stopped all of that.  I left my classroom to go spend Thanksgiving week with my family and I haven't been back.  It's been a year since I have taught a lesson, done yard duty, met with parents.  I don't know what the future holds, whether I will be able to return to teaching one day or not.  I do know that I will not be going back this year.  So I have been forced to explore a new identity, a new me.  I don't know what to call myself.  Am I a teacher out on leave?  A stay-at-home mom with a home business?  A small business owner?  A cancer patient?  A cancer survivor?  On different days and at different times, I am all of those things.  I'm learning to be more fluid, more go with the flow, more roll with the punches.

In many ways, this past year has made me less patient and tolerant.  Less patient with people who thrive on drama and less tolerant of people who are just in it for themselves.  It has given me a laser focus on what is important and what is just b.s. and I have no patience for the b.s.  And no tolerance for people who insist on flinging it wherever they go.  I would like to think that I am more empathetic and less judgy, more easily approachable and less closed off.  And better willing and able to see the humor in just about anything.  My sense of humor may be a little skewed now (you wouldn't believe some of the things that have sent me into total hysterics) but I don't see that as a bad thing. And I know that I am so much more grateful than I was a year ago.  Grateful for the big and the little and everything in between.  Grateful for forward progress, even if it is measured in baby steps.  Grateful for medical technology and low tech snail mail that brought the most wonderful cards in my darkest hours.   Grateful for stinky little boy hugs and kisses and the occasional tween approval.

So, one year ago, my life got turned upside down.  Was it horrible?  Yes.  It is something I really wouldn't wish on my worst enemy (I don't actually have an enemy, but still...)  But do I regret it?  No.  Not at all.   Cancer brought me to a new and different me, hopefully a better me.  It brought me new opportunities and adventures.  It brought new people into my life and helped me weed out the ones who weren't right for me anymore.  And it brought me so much friendship and love.  I'll take it.

Love and sparkles,

Friday, November 6, 2015

Getting Back to Busy

Wow....can't believe it has been almost three weeks since I last posted.  Time flies, and all that, right?

Happily, I have been busy.  I have been creating and photographing and editing and writing listings for my Etsy shop.  It's a lot to learn, much of it way outside my comfort zone.  It's fantastic!  Social media is the part that is proving to be a challenge to me...Pinterest I can do, Facebook I can do.  Instagram and Twitter, not so much!  But I'm reading and learning and trying...and probably making a lot of mistakes, but I'm okay with that. 

I'm always at my best when I am busy.  BK (before kids), Steve and I always talked about how busy we were.  We really, really had no idea.  We were busy going out to dinner and seeing movies and sleeping in on Saturday (and Sunday!) mornings.  I was a new(ish), young(ish) teacher and spent tons of time in my classroom and Steve was working lots of long hours.  And then the girl arrived.  And suddenly we were busier than we could ever have imagined.  We looked back on those pre-child days and wondered why we ever thought we were busy.  And then the first boy...and our lives got busier.  And then the second boy made his way into the world and it was as if we didn't have a minute to spare.  Our lives were lived in the car, running from place to place.  There was always another errand to run, chore to complete, birthday party (or parties) to attend.

And then cancer happened.  Full screeching stop.  Well, full screeching stop for me.  Steve, on the other hand, he was still busy.  So over the last many months while I have been at home recovering, I have watched busy happening around me, but I haven't been participating in it at all.  I have watched from the sidelines, hoping the coach would put me back in the game (funny, a sports metaphor from someone who hated playing sports!!!)  It has been a true delight over the last two months or so, since I really started feeling like rejoining the human race, to step back into the busy.  But I really only stepped back in with one foot.  Mornings are difficult for me as I am more swollen then and it takes a while for me to really start feeling good, so Steve manages mornings most days on his own.  Usually about the time the four of them are ready to walk out the door, I am about ready to get started with my day.  And then when they are gone, when the chaos of getting three kids to school subsides, I am left in an empty house, just me and the dogs.  For a long time, I didn't know what to do with myself.  I wasn't used to alone time, to getting to decide what I do and when I want to do it.  I'm used to structure and a daily schedule.  I binge watched shows and binge read books (I think at one point I had read 30 books in less than a month) and obsessively stalked Pinterest.    But I was totally bored.  And then my Etsy idea happened and suddenly my days had a purpose and I was busy again.  Yay! 

But, as in all things this year, I am learning as I go.  I am learning that I just don't have the energy to do all the things I want, when I want.  I have to pace myself, I have to pull back and say no, I can't do all that in one day.  These are things I am not good at.  I'm not good at saying no.  (Well, except to my kids...just ask them!)  So, I am trying to be good to myself.  I am trying to listen to my body when it tells me to stop.  I'm trying to be kind to me, the person I am hardest on, always.  Some days are not going to be perfect, they are just going to be good enough.  And that is going to have to be okay, for now.

In other news, I did see my doctor a couple weeks ago and he was finally able to scope me (and by scope I mean stick a camera up my nose and down my throat...really my favorite thing in the world to do!) and actually see my vocal cords.  Those darn cords have been obscured by swelling since my first surgery way back in December.  So, what does that mean?  It means that my airway is no longer blocked and we are making a plan to remove my trach.  He gave me permission to start capping the trach, which basically means putting a different tube into it than the one I usually wear.  This one has a cap on the end which does not allow any air to move through the trach.  Essentially it forces me to breath without the trach.  When I can be capped for 24 hours, meaning I have to sleep with it in, he will remove the trach completely.  Yay!  But here is the's been two weeks and so far I am only up to an hour, total.  You all know I want this trach out more than anything.  I have certainly whined about it enough on this blog!  The issue is that when I put the cap on, it is extremely claustrophobic, if that makes any sense.  My speech therapist likened it to learning to snorkel (which I won't do because the idea of it makes me claustrophobic...are we seeing a pattern here?) and learning to coordinate your breathing.  I know in my head that I can breathe, even with the cap on.  But I still can't push myself past that hour.  So here I go again, learning to be kind to myself, not to beat myself up for not being able to do the full 24 hours on the first (or second, or third, or twenty-seventh) go round.  I know that eventually I will get there, that I will not have this trach forever.  I just have to be, you guessed it, patient.

While breathing without the trach is proving to be a challenge, swallowing is moving along nicely.  I went from only being able to eat thin soups a few weeks ago to now being able to eat small amounts of mashed potato consistency foods, as long as I have a sauce of some sort to help them go down.  My big moment this week was eating half of a scrambled was the best egg I have ever eaten in my life!  Chocolate continues to taunt me (all that beautiful Halloween candy) by just tasting like dirt and all sweets make my throat hurt, but I can taste coffee, so all is not lost.  I am hopeful that my taste buds will come back...I have a lot of recipes pinned on my Pinterest boards that I am dying to try!

Enough about me, it's time for a little kid bragging. Those of you who know us well know that my girl E is a dancer.  She lives and breathes dancing.  When she was four, I took her to see our studio's production of Cinderella, with the TA from her combination tap/ballet in the starring role.  (That young girl is now one of E's favorite dance teachers!)   At the intermission, E turned and looked at me and said, "Mommy, that's what I want to do, I want to dance on my toes."  Well, fast forward 8 years, more ballet (and tap, jazz, lyrical, contemporary and tumbling) classes than I can count...and she is about to realize that goal.  She worked incredibly hard this last year and really pushed herself as a dancer and as a result, she was invited to go on pointe.  Early tomorrow morning we will meet her ballet teacher at the dance supply store and she will be fitted with her very first pair of pointe shoes.  She is floating on cloud nine and is absolutely beyond excited.  Me too, but for a different reason.  E has always been that kid who decided on something and then never changed her mind.  This was no different.  She set a goal (as a four year old!) and nothing was going to deter her from that goal.  I am so proud of her for achieving this!  She also decided sometime in the middle of last year and all that was going on, that she wanted high honors in school (all A's) and she went for it and achieved it.  This school year is proving to be no her parent teacher conference, her teacher pulled up her grades and not only did she have all A's, she had a couple A+'s.  Wow!  I am putting all this praise down here in public so that I can come back and reread it on days when she is being a true tween and is making me want to pull my hair out. 

I can't leave the boys out of this love fest!  D just finished an after school art course and he surprised all of us.  Some of his pieces are just phenomenal!  He is becoming quite the reader (even though he will tell you he can't read...goofball) and math is totally his thing.  He gets math concepts faster than I ever could and I am sure his math skills will leave me in the dust pretty quickly.  He shows great skill in making his sister crazy, as well.  Me being sick seemed to be harder on D than on either of the other two kids.  He was in quite a funk for a long time but I think we are finally on the other side of that.  He is still my most sensitive kid, but I think a lot of that just has to do with who he is, not so much our situation anymore.  I was so proud of him the other day...I went to go pick him up and I was talking to the daycare director and out of the corner of my eye, I saw him talking to another little boy, who I know was asking about me because he kept putting his finger on his neck, just like I do to talk.  Daniel very matter of factly told him that I have to cover the hole in my neck so the words will come out, otherwise it would just be air and nobody could hear me.  I asked him if it bothered him that I was sick and I looked different and all his friends had questions.  He said, "Mommy, you don't look different, you just look like you.  And I can answer questions because I am smart."  I heart that boy so much it hurts sometimes!

J is, well, he is just J.  He is smart and funny and we often have to remind ourselves that he is still three because he acts like he is about 25.  He gets frustrated easily because he doesn't want to be little (he is medium, just ask him!) but he can tell you stories that will have you rolling on the floor laughing.  He loves to dance and sing and perform and I am pretty sure he is the kid in charge in his preschool class.  He has a bit of a temper (hello...he is so much like my dad!!!) but is just as charming as can be most of the time.  And quick...he is so, so quick.  His logic skills are going to get the best of me, I am sure of it.

Okay, I really think that is enough for now.  Hopefully I will be back on tomorrow sharing pictures of the pointe shoe fitting and maybe I will even figure out how to link some product pictures back to my shop.  Until then, I just added a whole bunch of new stuff, so use that button over there ---> somewhere and head to my Etsy shop and check me out!

Be well!

Love and sparkles,