Thursday, December 31, 2015

A Very Happy New Year!

Here it is, the last day of 2015.  I have never, ever been so glad to see a year end.  Usually, we celebrate New Year's Eve, we watch the parade New Year's Day and that's it, everything goes back to the way it was, nothing is really very different.  But this year, the turning of the year on the calendar just means so much more to me.  2015 was pretty hellish, to say the least.  But I made it.  And now I really, truly get to put it all behind me.  I am starting 2016 with a smile on my face and in my heart.  I feel like I am beginning the rest of my life.  (Wow, cliché much???)


Being home with my kiddos these last two weeks, I have realized that Steve and I (mostly Steve) did a really good job shielding the kids from the worst of what was happening.  We had some conversations this week that showed me that they understood what happened, they were a little worried, and now they aren't.  Now I'm just mom again.  Not mom who is sick or mom with a trach, just plain old mom.  They know things are different, that I have to rest more, I can't really yell (seriously not disappointed by that one!) and I still have a tube that I get food through.  But none of that matters, they aren't phased by it one bit.  I am so thankful for that.


I've been thinking about resolutions.  I've always been a big resolution maker...and breaker, sometimes on the same day.  My resolutions have always been about losing weight or getting healthy or being more organized (might not give that one up!)  And I don't just make them in January either.  Ask Steve...I am famous for what we dubbed "Self Help Saturdays" where I would decide on a new diet or eating plan for us.  Sunday we would shop, Monday and Tuesday I would cook, and by Wednesday it was all out the window.  I have done this more times than I can count.  I resolved I was going to exercise everyday and then the second day it rained, so I couldn't possibly take a walk and that was it, I was done.  So this year, while I'm still making resolutions, they are of a very different ilk.


First resolution...treat my body well.  My poor body has been through a lot.  I have been poked and prodded, cut and sewn, bruised and scarred, and burned from the inside out.  It's a lot for one little body to take in a year.  Through the course of the year, I have lost a little over 100 pounds.  (Those pounds were the reasons for all those self-help Saturdays.)  Not the most ideal diet, by any means, but I take this weight loss as my silver lining to this whole darn thing.  This weight loss is so good for me in the long run, I intend to respect my body and the work it has done for me this year, and be good to myself.  That means eating well and moving more, both at a slow and comfortable pace.  And listening to my body as well.  Listening when I need to rest and paying attention, very close attention, to anything that might be just a little out of whack.  I will check the girls, get my mammogram (I'm behind a year, but I've had a few other scans!), do any other tests and screenings I need to do.  (And just know...I will be a nudge...if I'm getting screened for things, you know I'm going to be bugging all of you about your screenings too.  Just because I love you!)


Second resolution...listen to my inner voice and trust it.  I've realized this year that the little voice in my head says some really smart things and I should really listen better.  I have spent my whole life ignoring my own voice and following whoever talked the loudest.  Not any more.  I have to trust myself.  If I am going to build this blog, my business, a future for myself, I have to follow my instincts and trust my gut.  I'm going to make mistakes, I'm sure of it.  But that's okay.  As long as I am true to myself, it will all be good!


Third, and probably most important resolution...I'm going to be.  Be healthy, be kind, be loving, be thankful, be in the moment, be happy, be me.  I'm going to live this year with everything I have.  I'm going to embrace moments I might have let go by before.  Even those moments that don't seem worth celebrating, I'm going to be in them.  I'm going to put down my screens more and connect with my people (making them put down their screens won't be easy...but oh so worth it!)  I'm going to listen with my whole self instead of trying to do ten things at once.  Sounds simple and totally complicated, all at once.  I'm looking forward to seeing what comes out of it.


So, there they are, my new year's resolutions.  Are you making any this year?  What are they? 


Happy New Year to you, my village.  You already know how I feel about you, but I will say it again anyway...I love you and I am so thankful you are all in my life.  You helped me make it through my year of hell and now I look forward to sharing all the sweetness of the new year with you.  Big hugs!!!!


With much love and lots of new year sparkles,
Gayle


Talk to you in 2016!!!

Wednesday, December 23, 2015

Oh Happy Day!!!

I started this post at 3 a.m. this morning.  I was all snuggled in the corner of the littlest one's bed, listening to his breathing, wondering how long it would take his brother to realize I was in the bottom bunk. (He never did!)  I just couldn't sleep. 


One year ago was my surgery day.  The true physical beginning of this journey.  As I lay curled at a very awkward angle around the boy, I was remembering back to the same exact time that morning.  I was laying in my own bed, awake, willing time to stop.  I had no idea of what was coming for me, I just knew I didn't really want any part of it.  I was trying to figure out a way to just run away, avoid it.  But there was no getting away...this beast was inside of me and the only way to get it out was this surgery.  It was not a good morning.


This morning was a very different story.  I was in my happy place.  These boys, their sister, tween that she is, the hubs...they are the reason I didn't run away.  They are the reason I made it through those dark days in the hospital, through all the radiation and the yuck that followed it.  I found a very peaceful place in my journey this morning, and it was a very good thing.


Fast forward to later in the day:  last week was my trach removal and today was my follow up.  I thought it so fitting that I would have this appointment on this anniversary day.  My doctor, my hero, walked into the room all smiles and said "This is it, this is the appointment we have been waiting for."  Never have truer words been spoken.  For a week now I have been taped up, coughing a lot at first, then less and less as the days passed.  As he removed the tape, he was all smiles.  Healed, closed, the horrible, awful, bane of my existence trach was gone for good.  No more hole in my neck.  His comment about it..."Your body really wanted that trach out!  It was ready!"  Abso-damn-lutely!!!  I have to wear a bandaid over it for the next seven days, but then, that's it, I'm done!  Unless of course, I hate the scar so much I want him to revise it.  Very, very doubtful!


(Before I tell the rest of the story, here is the funny for the day.  The two big kids had doctor appointments just before mine and Steve had joined us, so we were a full house.  As the nurse was checking me in and discussing how I was feeling without the trach, my darling D., who maybe doesn't always pay attention to what is going on, says "Oh hey...your trach is out!  That's cool!"  Yeah bud, it's only been a week.  Way to notice!!)


So after that happy appointment, I had treats to deliver.  I had already left cookies for my doctor's staff, just as a small thank you for the hard work that they do.  Now it was time to head upstairs.  It was important to me to thank the nurses who took care of me while I was in the hospital.  I don't have many memories, and none of them fond, of the ICU nurses, although I'm sure they were wonderful.  What I do have is enduring memories of the care the nurses in the unit gave me.  At my very worst, they were there for me, some of them holding my hand along the way.  Of course some were better than others, that's true in any profession, but for the most part, I really felt like the nurses who cared for me were amazing and compassionate and calm, even when I wasn't.


As we walked down the hallway to the unit, we passed through the waiting room where families were sprawled all over the couches and chairs, waiting for any bit of news from the operating rooms.  Steve told the kids that was where my crew waited all those long 11 hours during my surgery.  At the time we were walking through, I would have only been about halfway done.  I got a chill as we walked by.  Then into the unit I went, big box of sweet treats in hand.  I explained to the nurse at the desk that I just needed to drop the treats off to thank them for everything they had done.  I knew my nurses weren't necessarily there, and that was okay.  I wanted all the nurses (and the CNA's...I mustn't forget the CNA's!!!  Their job is crucial too!) to know that their work meant the world to me.  The nurse asked which room I had been in and I honestly couldn't tell her.  So many parts of those days are still very fuzzy.  It didn't matter though.  This was the closure I needed.  She was genuinely touched that I had thought to bring them treats on my anniversary day and wrote my name down, promising to find my nurses and pass along my thanks.  It was a brief interaction, but it meant so much.


When we got downstairs, I immediately recognized a woman in the lobby as the Child Life Specialist who had spent hours with me while I was in the hospital, helping me formulate a plan for reconnecting with my children when I got home.  She was the one who gave me the idea to take the pictures of my different surgery sites to show them where they could touch me gently and where it would be painful.  That made all the difference to us and the boys still talk about how they knew they couldn't touch my arm because of the ugly picture, but now they can because it is just me and it doesn't hurt.  So I marched right up to her and thanked her too (I was kind of sorry I didn't have another cookie with me!)  I told her that I thought she had an incredibly important job and she was really good at it.  I know that she was touched, but really, it meant everything to me to be able to tell her that!


So that was it...my very happy day!  I wasn't sure how I was going to feel today, but honestly, through all the reflection, I am just simply happy.  I know there are going to be hard days ahead.  I'm not done with everything.  There are things I will be dealing with for the rest of my life, side effects from the surgery and the radiation, but now I know there isn't anything I can't handle.  I am resilient, I am strong, I am a warrior!


Oh, one more thing.  I have posted very few (almost none, I think!) pictures on this blog.  It has not been pretty.  There are pictures from this year, but none that I want to look at regularly.  Originally I thought I would post them, but I just couldn't do it.  It was too painful for me.  That changes today!  I'm no selfie expert (apparently I need some selfie tutoring from my daughter) but I wanted to share a couple of pictures.  My neck is free and clear and something to behold!  And the scars, the scars I worked so hard to earn...they are so much smaller than I imagined. Not going to have a problem rocking them at all!  So here goes...the big reveal!






 Here I am, neck all out in the open ( I keep feeling phantom trach straps!) but scar covered up.
And here I am, all exposed to the world!  Not nearly as bad as I imagined.

So that's it for me today.  I'm excited and happy and think I should go get some crafty, creative stuff done for the new year.  And also figure out this adding pics to the blog thing, because this was not how I intended it to look!


Love and sparkles to you all,
Gayle


Wednesday, December 16, 2015

Eleven Months, Three Weeks, Two Days...But Who Is Counting?

Eleven months, three weeks, and two days ago, I went into the surgery that would save and dramatically change my life.  I went in with the knowledge that during the surgery, I "might" be getting a trach put in, but really, I would only need it for a month or so, while I recovered.  Here's what I have learned about cancer:  nothing ever goes as planned.




Eleven months, three weeks, and two days ago my trach went in...and today, finally, it came out.  (I'll pause here for the applause and cheers!!!) 




I was anxious heading to the doctor today, knowing that he was going to torture scope me, and figure out if today was the day.  I had been here before.  There was that day in April when I thought it was coming out, but the decision was made to leave it in for radiation.  There was another appointment in July when I was sure he was going to take it out, but alas, I was mistaken.  And so I waited...and waited...and waited.  I followed directions and did what I was supposed to do.  And still, it stayed.  Nothing EVER goes as planned. 


Sensing my frustration a few weeks ago, my hero doctor decided to torture me in a different way and put me on Prednisone, in an attempt to get the swelling in my airway to finally, finally go away.  While the side effects of the Prednisone leave a lot to be desired (seriously...have you ever heard the molecules in your body moving?  All of them?) I can't argue with the results.  Within a few days I was eating (a little) more, tolerating the cap in my trach longer...this stuff really works!  By the end of the 15 day course of treatment, I was using the cap for a full 24 hours at a time, all day and all night.  That was the requirement for trach removal.


That brings us to today.  First the scope...big thumbs up (still a little swelling, but not enough to bother with the trach anymore) and then it took him about 5 seconds to take the darn thing out.  I had built this up in my head to be such a big moment...and it was over before I could blink!  No stitches, just a few steristrips to close up the hole (which Steve did take a picture of...however, I don't think that is a pic that will ever see the light of day!) and then he spent a few minutes showing my darling husband how to tape me up.  The whole thing was a bit anticlimactic.  Which I suppose I should be thankful for...given that there were an awful lot of really exciting but not pleasant moments this year.


I thought I would be dancing and celebrating tonight...and I am, in my head.  But the reality is, having a trach for very nearly a year means my body has some adjusting to do.   This is almost the last hurdle (feeding tube is next...) before I can really say I am done with this whole thing.  The important part, even if I'm not quite ready to celebrate it, is that I made my goal.  I was determined to get this thing out of me before I hit my one year surgery anniversary.  Eleven months, three weeks, two days...okay, so I like to cut things close!


All the complaining I did this year about my trach, I do have to give it a little credit.  It kinda sorta kept me alive during this whole ordeal.  Without it, there would have been very little breathing.  So, I guess I have to put the trach in my thankful column.  Thankful that it existed to keep me breathing, thankful that I am healthy enough to not need it anymore.  It's a win-win in my book!


One week from today, I go back to my doc so he can check to see how the hole in my neck is closing.  One week from today is the one year anniversary of my surgery.  One week from today I can check that anniversary off, mark it done and move on.  And I can delight in the return to normalcy around here (at this moment my youngest is marching around in jeans, no shirt, and one sock...yep, things are definitely getting back to normal!)  But I'm not making any big plans.  I'm going to take things one day at a time, savoring each deep breath. 


Love and sparkles (and delightful deep breaths the nontrach way!),
Gayle


P.S  For those of you still cheering and applauding...you can stop now!


P.P.S.  For all of my peeps who just finished Chanukah...congrats and Happy Chanukah!  I hope your candles danced brightly and you shared latkes with all those you love.  For all my peeps who are getting ready for Christmas, I wish you a peaceful, love filled holiday.  And for the peeps who celebrate something else...Happy Holidays!!!


(And for all of you who are still cheering and applauding...it's okay to stop now!)

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,
Gayle







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 problem...it'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 egg...it 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 different...at 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,
Gayle

Thursday, October 22, 2015

Changing Perceptions...My Own

Note:  I wrote this post on Monday.  Due to technical difficulties (do not get me started on the Wi-Fi issues at my house...argh!) I am just now posting it.  So pretend it is Monday morning when you are reading this...


2nd Note:  Thank you to all of you who have visited www.sparklesandspitballs.com and checked out my shop.  I appreciate all your support.  Things are coming along nicely and I am enjoying myself immensely.  If you haven't checked it out yet, please do!


Okay, now on to the regularly scheduled, but really late, post:



I have never been the most confident person.  I can’t walk into a room full of people I don’t know and just start talking to people. I was painfully shy as a young child and even now myself to be relatively introverted (I said relatively, for all of you who are chuckling at that one!)  Sure, as a teacher I am more than willing to put myself out there…I sing, I dance, I act silly, anything I can do to make learning fun for my students.  But take me out of the classroom, I’m always afraid people are watching me and judging me.  I was always the cautious child, I didn’t really take risks and I certainly wouldn’t try anything new unless I knew I was going to be successful at it.  What would people think if I tried to do something and failed miserably?  It was easier not to try.

 When I hit my 40’s, that fear started to diminish.  I started realizing that I had spent 40 years worrying about what other people thought, valuing their opinions of me more than my own.  But even still, it was hard for me to come out of my shell, to put myself out there and talk to people I didn’t know or try something I had never done before.  And then came my diagnosis.  Suddenly I was in a whole world that was new and risky and really, really scary.  I had doctor’s appointments and tests and I had to advocate for myself, which I had never had to do before.  And once I had my first surgery and I wasn’t able to talk for months, I had to do all that nonverbally. 

I won’t rehash all the details of what has gone on in the last ten months, those stories are all in previous blog posts.  Suffice to say, it has been a journey to find me.  For many months I felt lost.  In the last few weeks, since I made it through those first three months post radiation and then got my all clear, my new birthday, I feel like I have become a new person.  I am more confident than I have ever been in my life.  I am putting myself out there, taking leaps that would have paralyzed me before.  I went through hell and I made it through and I am better because of it.  Of course, I wish I had been able to get through to this new me without the pain and the disfigurement and the fear, but I don’t think I could have.

This past weekend was my 25th high school reunion.  I know I talked about it before, when I was deciding whether I was going to go or not.  Eventually, I made it my goal.  I needed to get myself feeling well enough to make it to the reunion.  And I did.  I went to the reunion and had the most amazing time.  But it is the months leading up to the reunion that have been the most important to me.  I have made connections with people that were unexpected and are so special. 

In high school, we all fell into niches.  We found our group of friends and it was the rare person who could comfortably move between those groups.  I was not one of those.  I had my group of friends that I was comfortable with, those who knew me well and who I could be silly and out there with and really just be me without fear of judgment or derision.  I knew who the kids in the other groups were, but never went out of my way to befriend them, and they never approached me either.  I didn’t dislike them, I just wasn’t comfortable stepping outside that comfort zone.

In preparing for this reunion, I connected with one of the women who was organizing it and we started talking.  It was a simple offer to help, to do what I could from behind my computer.  But that one little step brought me to a new friend.  This was someone I don’t think I ever had a conversation with in high school.  I don’t know if we had any classes together, don’t think our paths really crossed.  But suddenly, here we were, texting regularly, catching each other up on our lives, like we had been friends forever.  She sent me regular check-in messages, making sure I was feeling okay, and listening and encouraging me when I wasn’t.  One of the highlights of the reunion was getting to give her a hug…which we did several times throughout the evening.  We live minutes away from each other and I expect that our friendship will continue to grow. 

I started thinking about shifting perceptions during the reunion, as I had conversations with various people.  I talked to people I had never talked to before, not in high school, not at the previous reunions.  And I heard things that surprised me.  I introduced myself to several people and each time I was met with “Oh, I know who you are.”   They saw me, they knew who I was, they wanted to be my friend way back then, but I was so shy, I was afraid to step outside my circle.  I wasn’t as invisible as I thought I was.

Before the reunion, when we were trying to make sure everybody knew about it, I sent out messages to a bunch of people, most of whom I have not spoken to in nearly 25 years.  I didn’t know what to expect.  I didn’t hear back from everyone, which was to be expected.  The people I did hear back from…it was just amazing.  We had these fabulous catching up conversations and I am just blown away by the people these kids I knew so long ago have become.    And to see some of them at the reunion, my heart is just so full!

Even before the reunion, I was shattering my own perceptions of myself.  As you know, I have started an Etsy business.  This is a whole new world for me.  I have been a teacher for so long and I’m comfortable there.  I know what to expect and how to manage my days.  In starting my business I have had to learn to promote myself, to be a little shameless about handing out my card or mentioning my products.  I have ideas that have to be created, tested, refined.  I have new skill sets, like drilling holes in glass (who knew?) and taking product pictures.  Sometimes things work.  Sometimes they don’t.  Sometimes they fail miserably and end up in the trash.  And guess what?  The world didn’t stop turning because I failed.  No one pointed fingers and laughed.  In fact, absolutely the opposite happened.  As I shared my failures, new ideas evolved, new strategies for making my products work, new techniques to try.  I have grown so much in the last month, just from this little craft business.  It has pushed me far beyond what I thought I could do.  A little push outside that comfort zone is a very good thing.  And a shift in perception, a new perspective on who I am, is also a very good thing.

A little backtracking to something I posted on Facebook last week…many of you know that I have become a part of a group of Facebook that is comprised of various oral, head, and neck cancers and their caregivers.  It is a safe place to ask questions, vent, and celebrate, sometimes all at the same time.  It is a group I go to whenever I need reassurance and to just hear that what I am going through is “normal.”  I don’t know anyone in the group, that is, I have never met any of them personally.  But over the last ten months, I have gotten to know many of them quite well and often relied on them when things were particularly difficult.  One of those people was a man named Jim.  He was just a little older than me, father of two, and had a similar diagnosis and surgeries.  While I was fortunate and only had to do radiation, he needed both radiation and chemotherapy.  I finished radiation about three weeks before he did.  Jim was brash and funny and honest.  And unfortunately, his body was not able to recover from all the trauma it had been through and sadly, Jim passed away last week.  His death hit me hard.  It really shook me to my core.  At no time during my illness did the thought ever occur to me that I wasn’t going to make it, that I wouldn’t be here to raise my kids.  And here was this shocking reminder that things could have gone very differently for me.  His passing made it abundantly clear to me how truly lucky and blessed I am to still be here, to be recovering, no matter how slowly it may seem to be moving.  It made me realize that no matter what the future holds for me, and I really don’t know what that might be, I will be fine.  Sure, it sucks that I’m not eating yet and it sucks that I still have my trach, but none of that matters.  I am still here to hug my kids and kiss my husband and shop with my mother and pester my brother.  I’m here to laugh with my friends and advocate and educate and simply live.  And so, this man I have never met will be with me always, reminding me of all my blessings.  If you are reading this, you are one of those blessings.

Okay, this has gone on long enough today, but before I go, I have a challenge for you.  Think about the longheld perceptions you have of yourself.  Are they still valid?  Do they need an update, a reboot?  What would happen if those perceptions changed, if you took the restrictions off?  Just food for thought…but let me know what you are thinking, I can’t wait to hear!

Love and sparkles to you all,

Gayle

Thursday, October 8, 2015

Happy Birthday to Me!!!


So have you seen or heard that lottery commercial, the one where the announcer says, "It was an ordinary day...until it wasn't."?  That is how I am feeling because yesterday was just an ordinary day...until it wasn't.  Last night I was catching up on Project Runway with my daughter, my mom got home and came in to chat with us...and I noticed I had an email from my doctor.  I didn’t say anything as they commented on the clothes coming down the runway, but I knew what this email was, what it had to be.  Of course, an uncooperative Wi-Fi and shaking hands made things challenging, but when I finally got it to open, this is what I saw:

Hi, your recent scans are clear of cancer. Just post treatment changes. This is good news.

Of course, that isn’t all it said.  The actual email runs about four pages long, as it includes all the notes from the radiologist (and has some interesting little factoids, but that’s a story for another time, nothing horrible, I promise!)  But it didn’t matter about all that.  All I could focus on were the words “scans are clear of cancer.”   Clear of cancer.  And suddenly, I could breathe again.  A big deep breath, free of worry that I might have to start all over again.  With tears in my eyes, I paused Project Runway (sorry Heidi and Tim, I was having my own make it work moment) and showed the email to my mom.  It took her a moment to focus, but as soon as she did, she was breathing again too.  Smiling and breathing.  E. took the news in stride, trying not to seem too excited (she is almost twelve you know, we must not think anything about our parents is cool!) but I could tell how happy she was.  Steve was still in the boys room, trying to coax them to sleep, but as soon as he came out, I greeted him at the door with the news.  Another deep breath and a smile.  You could almost actually see the weight coming off his shoulders.

So here is the part that might give you goosebumps or you might just shake your head at me and think I am being silly.  I knew I was going to get my results yesterday.  You know how there are dates you never forget, the good ones and the bad ones…the day you get proposed to, the day you get married, the day you find out you are going to be a parent, the day you lose a parent, the day you realize the fertility treatments didn’t work and then the day that they did, the day you find out (unexpectedly!) that you are going to be a parent for the third time, the day you find your dream house, the day you find out you have cancer.  Add all those days to holidays and anniversaries and birthdays, those are a whole lot of days to remember.  Well, yesterday was one of those days, even before I got my email.  Yesterday was my dad’s birthday.  If he were still with us, he would have been..okay, I won’t say because my parents shared a birth year and I’m sure my mother wouldn’t appreciate me announcing her age to the entire world.  My dad has been with me this whole way, making his presence known at various times.   I knew that yesterday would be the day because I knew that he wanted to be a part of the good stuff too.  So now, Dad and I share a birthday.  For the last eight years, October 7 has been a difficult, hard to be happy day, because it’s hard to be happy when you miss someone so much.  But now October 7 will be forever be a happy, celebration day because it is the day my life started over!  As I write this, it occurs to me that of course Dad was involved in this…I think he was peeved that we weren’t properly celebrating his birthday, so he wanted to make sure we did it right from now on!  (Wonder where I get that Type A, controlling stuff from?)

I know that this is not over.  I am not done cleaning up the trail of destruction the cancer left behind.  I will never be done, there will always be some effect…it changed me.  Physically as well as emotionally.  I am not the same person I was ten months ago, not even close.  I look different, I feel different, I am different.  I have a lot of work to do, hard work, work on my speech, my swallowing, my stamina, my emotions. But now I can concentrate on that work without feeling like something is hanging over my head.  And that my friends, is a very good feeling.

I have so much more I want to say but I need to get moving with the rest of my day.  I have orders to fill (yay!) and work to do.  I was actually in the middle of a blog post yesterday when I had to leave to play dance mom, so expect another post either later today or tomorrow.  And thank you for the love, the texts, the messages, the comments on my FB post.  Having all of you out there supporting me has made this whole thing just a little easier.  You are one of the blessings that I count regularly.

Love and sparkles,
Gayle

Sunday, October 4, 2015

It's Alive!!!

Hi Friends...

First, can I just say the response to my last post was overwhelming.  The number of texts and emails and messages and high-fives I have gotten is amazing.  Thank you for having my back!  It warms my heart to know that so many people are on my team...and how many people wanted to take those girls out back behind the woodshed and give them a good wallop across the backside.  (Okay really...I have never lived anywhere with a woodshed, so I'm not sure why that phrase popped into my head, but it seemed to work there!)

An interesting discussion did come out of this.  Obviously my boys are too young to read my blog and my daughter is not usually interested...she is living it, why would she need to read about it.  But this post was different and I insisted that she read it.  Bad words and all...she knows I'm not perfect and I know she has heard those words before.  (We did have quite an interesting discussion about the phrases "meth head" and "crack whore."  I think I did a pretty good job explaining them without actually having to define the word whore  Not sure I could have managed to get through that one!)  She read it and then went off and did her own thing for a while.  A few hours later, in the car on the way to dance (because we are always in the car on the way to dance!) she asked me some questions about why they behaved the way they did and why people were so mean.  She had some interesting insights...I forget sometimes that my little girl is not so little anymore.  (Insert sad face here!)  She said she thought that their parents must not have done a very good job with them and that she thinks they must not feel very good about themselves to treat other people like that.  Now, I know better than to gush over her about things like that (so not cool, Mom!) but inside I was gushing like crazy.  She promised that she would never, ever, ever behave that way toward another person.  And I totally believe her.  This year has changed us all so much.  Sometimes I get so wrapped up in my own stuff that I forget about the impact all of this has had on the whole family.  I'm glad kids are so resilient...while I will never forget this year, they will be able to push it to the back of their minds and mostly forget all about it.

But now, the real reason for today's post...drumroll please...My Etsy shop is officially open!!!  Yay!  It has been a couple of weeks filled with lots of applications, paperwork, product trial and error, market research (thank you to those friends that let me badger them constantly!) and tons of time taking pictures and writing policies and listings.  A big thank you to my VP of all things Technical (Steve, if anybody was wondering) and my legal department (again, if you are wondering, that would be my mom!)  Without their help, my ship would have already sunk!  I have a few items already listed, with more to come in the next few days.  I expect to add items pretty regularly, so please, check back often.  The address is www.sparklesandspitballs.com.  Right now I am maintaining two separate sites, this one and the shop, but soon you will be able to find both in the same place...how convenient!  So, come visit, drop me a message through Etsy Conversations, leave me a review, and shop if you find anything that makes your heart skip a beat.  Don't see what you are looking for?  Send me a message and together we can come up with a custom listing for you!  Thank you for all your support on this.  While the last few weeks have been busy and even exhausting, they have also been exhilarating.  I'm a small business owner!  Who woulda thunk it?

That's it for now...don't forget to tell all your friends about www.sparklesandspitballs.com and the badass, meth head crack whore who is the crazy lady behind it all!

Love and sparkles to you all,
Gayle

P.S.  For those of you keeping score, I am still waiting for the results of my scans.  Anxious, nervous, hopeful, impatient.  All at the same time.  As soon as I know, you will know!  Cross my heart! --G.

Wednesday, September 30, 2015

The ghouls are already out...but so are the superheroes.

Warning...this will probably be a long post because I am all fired up.  Hopefully you will be too by the time you finish reading this.  Another warning...there may be some harsh language.  Did I mention I am all fired up?

Before I get into my story, I want to say that I have made major progress in the last few weeks.  I am feeling better, I am looking better, the swelling in my face and neck is way down, I'm really feeling close to about halfway human.  Considering where I have been, I will take it!  I have also made major progress in my confidence level.  I've had conversations about this with several people and what I have realized is that I just really, really don't give a shit what people think anymore.  Yes, I look different, but I don't feel like a major freak show anymore, so whatever.  I have standard answers for when people ask me questions (which I love, by the way!  I would much rather answer questions than be stared at.  Kids are much better than adults about this.)  I'm not hiding anymore, I think is my main point.  I have to live my life and deal with my trach and feeding tube and strange speech and I'm used to it.  Do I like it?  No, not particularly.  Is it better than the alternative?  Most definitely!  The only thing that matters to me is that the people I love most in the world, those little (and not so little...have you seen my daughter lately???) people who call me Mommy, they don't notice any of it anymore.  And of course, everyone else I care about, all of you, you are all cool with it too.  In fact, you really need to stop complimenting me about how good I look...it's going to my head!  Okay, all that being said, here is today's story.  It starts out nicely, but then takes a major turn.

I was out running errands this morning.  Probably more errands than I should, especially since I have plans this afternoon, but I am working frantically on getting products up on my Etsy shop (more on that later!) so I had stuff to get done.  First stop, a local dollar store.  I won't mention it (or any of the other stores I visited today) by name, but it is someplace I go frequently.  I found everything I needed and was checking out.  The cashier, a very nice young lady, asked me politely, "Did you just have surgery?" as she pointed at my trach.  I said, "No, I had surgery about 10 months ago.  But thank you for asking."  She replied, with a genuine smile on her face, "Well, I hope you are feeling good.  I'm sure it was no fun."  I left the store smiling and with a happy heart.  There are good people out there. 

Next store was uneventful.  Third store, major big box store.  I was in the middle of one aisle, trying to decide between a couple of items.  I was blocked in the middle, there was an older womanmaybe in her early 70's at one end (I'll call her Kindly Grandma, KG for short) and two younger women, I'm guessing in their early twenties (let's call them Obnoxious Women, OW1 and OW2 for short).  I hear them giggling.  The following is a word for word account of our exchange:

(all of the following occurred in not very quiet whispers)
OW1:  giggling to OW2, pointing at me, do you see her neck?  I bet she has a big hole she has to cover.  Nasty! 
OW2:  I bet she smoked a ton like that woman on t.v.  You know, the one who talked through that whole in her neck.  (one starts imitating the commercial we have all seen, putting her hand over her neck and cackling)
OW1:  now hysterical with laughter, That lady smoked herself to death.  Whatever, she (pointing at me) musta done something bad to get them to do that to her.  Probably a meth head or a crack whore, I betcha. 

(Okay, really?  What about me says meth head or crack head???  I'm about as squeaky clean as they come, except for my occasional potty mouth!)

I had been trying to ignore them, but this was going too far.  KG started toward them, looking at me and saying "I'm going to give those girls a piece of my mind." I stopped her and said, "I've got this."

OW1 and 2:  Still laughing, until they realize I am walking toward them.  Suddenly, they look as if they got caught with their hands in the cookie jar.

Me:  First of all, I'm not dead and I'm not deaf.  You are rude, disrespectful brats who have no idea what anyone else's story is and I hope your mother's would be ashamed of the way you are behaving. 

They are starting to back away, when they realize they are stuck.  My new best friend, KG, had gone around the next aisle and parked her cart behind them.  I'm guessing if I hadn't continued, she might have put them over her knee and given them what for!  Now that they were blocked in, I continued:

"I had cancer on my tongue.  No one knows why I got it, I'm just that lucky.  I've never smoked, don't drink as often as I would like to, I just got cancer.  I'm not a meth head or a crack whore.  I'm a wife and a mommy and a kindergarten teacher.  I didn't do anything to DESERVE cancer.  No one, not even you, DESERVES cancer.  I had surgery ten months ago that cut out half my tongue and then they cut out part of my arm to put my tongue back together.  It hurt.  A lot.  More than you could imagine.  Then they sliced my neck open from ear to ear, to see if there was cancer there.  There was. I spent two weeks in the hospital, I missed Christmas and New Year's and my baby's birthday because I was so sick I couldn't come home.  I couldn't talk for almost four months, I couldn't tell my kids or my husband or anyone that I loved them, nothing.  I haven't eaten solid food since December, I get all my nutrition through a tube in my stomach.  I had another surgery and then I had to do 30 radiation treatments.  Do you know how they do that, how they give you radiation on your head?  They take a mask and put it over my face and attached the mask to a table so I couldn't move.  And then they shot radiation into me and I got horrible burns all over my neck and the inside of my mouth.  Horrible, painful, disgusting burns.  They hurt so much my kids were afraid to touch me because they didn't want to hurt me.  And then I finished radiation and I got sick, so, so sick.  So sick I didn't leave my bed for ten days.  Except for the 40 times a day I hobbled to the bathroom to throw up.  And now I'm here and I'm up and I'm out and I'm doing things and errands that I would have thought nothing about will send me to bed for the rest of the day because I'm exhausted, and you are laughing at me because I have to breath through a tube in my neck?  It's called a trach and I hate it, I hate it more than you could possibly know, but it has kept me breathing for ten months.  Without it, I would probably have died.  So now, please tell me what I did to DESERVE all of that."

Let me say, I didn't yell and scream this (I don't actually have that much breath!), I was very calm. Actually, I was kind of proud of myself.  It's not really like me to do something like that, or at least, it didn't used to be.  But if I don't advocate for myself, who will?  Well, I guess KG would, but still...

So at this point, these young women are at least looking a little remorseful.  They muttered apologies without making any eye contact and started to slink away.  I had one last bit of advice for them.

"Everybody has a story.  Before you are disrespectful and hurtful and frankly, downright bitchy, keep that in mind.  Ask.  Ask what happened.  Learn other people's stories, because someday you will have one too."  I'm sure that fell on deaf ears, they were so eager to get away from the raving lunatic in aisle 10, but maybe, later today, they will think about what I said.  Maybe not, I'll never know.

KG, my new bestie gave me a hug and wished her luck.  I thanked her for being my point man.  She told me I handled myself well, she would have slapped the hell out of them.  I told her she reminded me of my grandmother, all spunk and sass.  She laughed and went on her way.  (KG...if you ever happen upon this and read it, know that I thank you from the bottom of my heart!  I appreciate what you did for me!)

So I finished up that errand and since my adrenaline was flowing, decided to make one more stop.   My local craft store, one I visit often.  I picked up what I needed, including a $10 item I was only buying because I had a 50% off coupon.  This is an important detail...that coupon is the whole reason I stopped at that store.  Finished my shopping and got in line, I was behind about four other people.  The cashier greeted each customer with a smile and a hello.  And then it was my turn.  She looked up at me with a smile on her face and as soon as she saw my trach, she looked away, no hello, smile gone.  I swiped my card so I could keep the transaction moving quickly as there was now a huge line behind me.  (I'm sweet like that!)  I held out my phone so she could scan my coupon, but she never looked up and just put the transaction through.  She started to hand me my receipt and I said "You didn't scan my coupon."  I was still holding out my phone.  She looks horrified that she has to talk to me.  "Well, it's already done."  Really, seriously???  I said, "well, the whole point was to use the coupon, so you need to fix it."  She is now completely annoyed and gets on the phone to call her manager.  This is what she said to the manager, verbatim "You have to come here because I have a customer who is making me do a return and I have a huge line now because of her." OMG!!!  I cannot believe this is happening again today.  I look up at her, hugely annoyed, and catch the eye of the woman in line behind me.  I start to say I'm sorry to her, just out of courtesy, not because I did anything wrong, but she stopped me and said, "No worries.  You get her to give you that money back.  It's her fault.  I watched her the whole time and she completely ignored you."  Phew...it's not just me being sensitive!  Hopefully feeling shamed, the cashier returned my $10 item and rerang it using the coupon.  Five dollars is worth fighting for...but that obviously was not the point.  In the meantime, the manager had come to the front and started ringing people up on the next register.  My heroine, the woman behind me in line, said to the manager, "Your cashier was so rude to that customer.  She is nicer than I am.  If I was treated like that I would have left my stuff, walked out the door and never come back.  You need to train your people better or you won't have any customers left."  Both the cashier and I heard this exchange as she was finishing up my transaction.  She handed me my bag and in her most sarcastic, sickly sweet voice, she said "Have a nice day."  "You too, sweetie, you too."  The other customer walked out with me and patted me on the shoulder.  "Feel good and don't let the bastards get you down!" and she walked away.  Another ghoul and another superhero!

So that's it, that's my story.  I have calmed down now and should probably go back and edit what I wrote, but I feel like if I do, I will likely water things down, and I don't want them watered.  I want everything that happened to be out there in big bold print, so other people know.  There are stupid, mean people out there, but there are also wonderful, lovely human beings who are willing to speak up on someone else's behalf.  Thank goodness for superheroes!

Friday, September 18, 2015

I Made It!

Well, I made it, it's finally here, my first real milestone.  Today marks 12 weeks post radiation.  12 of the hardest weeks of my life. Seems like a lifetime ago that I had my first fitting for that damn mask, and now, it is three months behind me.  Three months from radiation, ten months from diagnosis. 

Why is twelve weeks so significant?  This is the way I understand it...if the science behind this isn't correct...feel free to correct me!  So after you finish radiation, you aren't really done with it.  It continues to add up in your system, peaking at about two to three weeks, then gradually starts to decrease.  By twelve weeks, there should only be a very minimal amount left.  I have this visual image of a blobby monster (not surprisingly, sort of a mucus monster!) that was born the first day I started radiation.  This radiation monster grew and grew and grew until it had completely taken over my life.  It was sitting on me, taunting me, 24/7.  It has slowly been shrinking, but still pops up big every once in a while, just to remind me it is still there.  As if I could forget.  I finally feel like this monster is, well, not gone, but definitely not in control anymore.  I will never be rid of the radiation monster.  There are proven radiation side effects that will continue to dog me the rest of my life.  Talk about a double edged sword...on one edge, the radiation made it possible for me to survive this cancer, on the other, it could possibly bring me a whole host of other health problems in the next year, five years, even ten or more years in the future. 

So today, I am celebrating.  It is a quiet victory, a personal milestone marked on my calendar, a birthday of sorts.  The big celebrations are coming...I am scheduled for a PET scan and a CAT scan in the next two weeks.  Honestly, I'm a little nervous.  My doctor can't say that he is 100% certain that there is nothing there until he sees the scans, but he is cautiously optimistic that all will be good.  I am too, I really think that the scans will be clear, but there is that lingering, nagging what-if hanging around.  I feel like I can't really start breathing until I get that thumbs up that I am completely cancer free.    I promise, as soon as I know something, I will post it here.  Good news travels fast!

Before I can share that news, I do have some other news to share.  Many of you know that since I started feeling better, I have been pretty bored around the house.  I have always been creative and crafty and love to have projects to work on.  Taking all that into account, I decided to combine my free time with my creativity and open a shop on Etsy.  It will allow me to be creative all day long, at my own pace, with the chance to rest if I need to as I continue to build my strength. 

I made this decision about a week ago and started talking to Steve about it.  Have I mentioned how amazing my husband is lately?  He is completely supportive of this new endeavor and as he has owned his own small business, he has been an amazing resource.  The week has been a blur...I made the decision, started doing research, filed all the paperwork and got all my licenses and permits (wow, so grown up that sounds!) and have been busy creating samples to put up on my storefront.  My craft room looks like a glitter bomb threw up in there!   The store isn't live yet, but I will be sure to let you know when it is...won't be long! 

I thought long and hard about what to call my store...and finally decided that I am too emotionally attached to Sparkles and Spitballs to let it go.  So, that is what it will be.  This blog will continue to be a source of news updates and information, hopefully moving away from all cancer all the time and more about life post cancer, but I will also include updates from Etsy.  I'm looking forward to this new adventure.  I have felt better the last few days than I have in ten months.  It is uplifting to have a purpose and a reason to get out of bed.

Time to finish up for now...I need to go make something sparkle!  Thank you for continuing with me on this journey...it has been a long, very bumpy road, but hopefully soon it will be a smooth and comfortable ride.

Love and sparkles to you all,
Gayle


Thursday, September 10, 2015

Playing the what-if game

I'm not sure how it is that I let weeks go by without writing here.  Every time I sit down at the computer to write, I reread what I wrote the last time, just so I don't bore you all by repeating myself over and over again.  But when I do that, it makes me so aware of all that has happened in the time in between.  Here's a quick recap and then I will get into the nitty gritty of this post.

Since my last post:
  • all my colleagues went back to work...and the school still functions without me;
  • big kids started school and for the first time in their lives, I was able to take them to school the first day;
  • little one had two weeks at home as an only child by day, youngest by night;
  • big kid Back to School Night;
  • I had my swallow study (much more on this later in the post);
  • I finally got my sh** together and put together my calendar for the year;
  • dance studio released the new schedule and after a zillion or so text messages, worked out a schedule the girl is pleased with;
  • Bat Mitzvah planning kicked into high gear (yes, already, even though it is a year away) with the signing of vendor contracts;
  • missed a big family function because my doctor didn't think it was a good idea, but sent the girl with her grandparents and am thrilled with how close she is to her cousins;
  • swear the girl grew another foot;
  • I climbed in the way back machine and had a wonderful visit with a friend who has known me forever;
  • exhausted mother-in-law returned home after chasing the youngest around for two weeks (Thanks Emily!);
  • littlest finally went back to school (more on this too, I think!);
  • dance classes actually finally start and all is right in the girl's world;
  • I am back to being a stay-at-home, alone-in-the-house, keeping-myself-busy kind of mom.
That's the update from Lipson Land, now I can get down to the real business at hand.  In truth, I have been avoiding this post for almost a week.  I had to have a mini-meltdown and have a hard talk with myself before I could sit down to write this.  I realized that I sometimes delude myself into thinking one thing and then have a difficult time accepting the reality of a situation.  Maybe that's called coping, I don't know, but I do know that once I write it here, the reality is out there and I have to deal with it.   I'm probably building all this up to a great big mountain, when it is potentially just a molehill to be stepped over, but time will tell.

So here's what is going on.  Last Friday, I had my swallow study.  For those of you who don't know what it is (I certainly didn't!), you are really missing out on a good time. The swallow study was done to determine whether I am having any difficulty with swallowing and if so, what those difficulties might be.  It involved an x-ray tech, a radiologist, and a speech therapist who specializes in swallow issues.  Never had an x-ray with an audience before!  So first there was a chest x-ray and then they seated me sideways in front of the machine so they could do a video x-ray (who knew those even existed???) of me swallowing.  I started with straight up barium thinned with a little water.  Yum.  Swallowed small spoonfuls of that delightful concoction and then worked my way up to something even more appetizing.  Applesauce mixed with barium.  Yep, it really is as disgusting as it sounds.  Maybe more so.  I am so thankful that my taste buds are beginning to come back, but it seems a little twisted that they start to function just as I have to do this test!   There are more steps after that, but I didn't get there, as I had a hard time with the applesauce.  After the applesauce made me gag (really?  Who wouldn't?) the therapist put the brakes on.  She showed me the video of me swallowing which was really quite fascinating and even with my untrained eye, I could see where the problems were.

I do okay, not great, with water and other drinks of that consistency, but when I moved to the thickened applesauce, it was too much work to get my airway completely closed to avoid food going down the wrong pipe.  We have all done it, swallowed something the wrong way, which I suppose is fine once in a while, but the risk of having it happen all the time is not something to mess around with.  So basically what the therapist told me is that I am not ready to eat yet.  Well, not eat what I want.  I can start working up to real eating with soups (thank you triple-digit weather, your timing is perfect!) and puddings, thinned out mashed potatoes, ice cream, etc.  Not horrible, but not what I was wanting to hear.  Worse than that...I have to repeat the whole process in six weeks.  Barium for breakfast, not my idea of a good time.

I've taken a long time getting there, but here is where my mountain vs. molehill issue popped up.  In reality, I know exactly how hard it is for me to swallow things.  I just didn't want to admit it.  In my fantasy life, I was going to go to this swallow study appointment and just kill it.  I would come home and start whipping up meals for my family and actually sit down and eat with them at the table.  Eating would be easy and I could begin to put this whole ordeal behind me. 

The therapists words and prescription blew that whole fantasy out of the water and brought my reality crashing down on me.  I was not ready to eat anything.  When I first got home that afternoon, I tried to blow it off like it was no big deal.  I immediately got on Pinterest and started pinning new soup recipes, trying to decide which one to make first.  I looked up puddings and custards and mashed and whipped potatoes and sauces and gravies.  And then the elephant in the room filled it's trunk with water and gave me a good dousing.  I wasn't ready to leave all this behind, I was still stuck smack dab in the middle.  I have this picture in my head of me in a giant maze and I've been wandering through it for months, just trying to find the exit.  I thought when I turned this corner, the exit would be right in front of me, but instead I hit another brick wall and once again, I have to turn back around.   By the time we got the kids in bed that night, I was a mess. 

Just like that, the what-ifs started.  I am really, really good at the what-if game.  What if I never get my swallow back?  What if I can never eat again?  What if the swelling around my vocal cords is permanent, what if the trach is permanent?  What if I can't go back to the classroom, back to teaching?  What if I never, ever, ever get my old life back?   I got in the shower and just sobbed.  And then I got mad.  And then I sobbed some more because I felt sorry for myself.  Why me?  When do I get a break?  When is something going to go right for me?  Pity party, table for one, no reservations required.  All of this because of one day, one test, not even the big test, that one is coming later in September.  Once I let it all out, I was feeling a little bit better.  None of those what-ifs had been answered, but I had had a good cry and things are always better after a good cry! 

Nothing has changed since last week, except that I know I just have to keep moving forward.  Some of those what-ifs might come true.  Most, if not all, will not.  I really debated writing about all of this, about all of my fears, my what-ifs.  So many of you have commented to me that I have a great attitude, that I am so positive (thank you for the compliments!) and inspiring (again, thank you!) but I need everyone to know about the struggle to get there.  People say to me all the time, "I don't know how you do it."  Frankly, some days I don't.  I have my ups and downs, my turn at the pity party.  I don't think I would be human if I didn't.  I have days that I really don't get out of bed, but then I have days where I can't sit still.  Days where I just want to hide from the world.  I get frustrated at my situation, at my body, at life in general.  I am so impatient (oh...did I mention that the speech therapist told me I just needed to be patient?  Just be patient...now my three least favorite words in the English language!) I just want to be done.  But then, I look around and I see, truly, how far I really have come in a relatively short amount of time.  I push the what-ifs to the side.  They are never gone, never really far from view, but for today at least, they aren't sitting in the middle of the road, blocking my way. 

While I was writing this, the mail came, the exterminator came to the door, dogs needed to be put away.  Texts came and were replied to, urgent emails attended to, my to-do list got longer.  Life keeps moving, and I have a choice.  I can lay in my bed and let it pass me by, or I can get back out there and be a part of it again.  What-ifs be damned...I've got things to do!

By the way, this is what came in the mail today:

Okay...there is obviously no picture here, despite my repeated efforts to place one right in this very spot.  If there were no technical difficulties, you would be looking at a stunning picture of the awesome rhinestones that arrived by carrier pigeon.  Sparkles, sparkles, sparkles!  I have craft projects coming out my ears...yay!  Maybe one day I will figure out my technical issues and be able to add more pictures...

Until then, love and sparkles to you all,
Gayle

Saturday, August 22, 2015

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


Tuesday, August 11, 2015

Busy, busy day

Yesterday started early, with an 8 a.m. appointment with the speech and language pathologist. I had to chuckle a little as I typed that because in my old life, 8 a.m. was not considered early at all.  But I digress...Without getting into to many details, the appointment that ensued was both interesting and emotional.  Basically, what it boils down to is that the next several months are going to be hard work to try to get my voice and speech patterns back to close to pre-cancer levels.  If you hear me making strange sounds or chanting nonsense words or see me twisting my mouth into various shapes, please don't be concerned.  I haven't lost my mind, I'm just doing my exercises.  Well, I might have lost my mind a little bit, but not too much more than usual.  This is going to be a lengthy process without a guaranteed outcome, but I just have to work with what I've got.  I don't know if it is going to work.  I have stopped trying to predict the future because I am apparently not that good at it.

After a feeding and brief rest, it was time to go see my radiation oncologist.  Many of you drove me to radiation and know that I had to go about 40 minutes from home for treatment because that was the closest Radiation Center.  Fast forward to one week ago and Kaiser opened a new radiation facility just ten minutes from my house.  Sigh.  Oh well, I'm certainly not volunteering to go through that again.  The good news is that I get to do all my follow ups at this closer site, as my doctor has moved down here.  The new building is absolutely spectacular, with brand new equipment and beautiful rooms.  I didn't see the radiation rooms but I'm sure they are nice.

My RO is lovely and patient and answered all of my questions, even the ones that were seemingly random. (And the answer is, yes, even though my PET scan will be from my head to mid-thigh, I do still need to get a mammogram.  But it can wait until I am feeling better.)  Then came time for the scope, my favorite part.  If you have never been scoped before, well, let me tell you, you are missing a good time.  First you get to inhale lidocaine to numb your nose and throat.  When you are good and numb, the doc threads a long, thin camera up your nose and down your throat as you breathe in to help it move.  It doesn't hurt, but it really isn't comfortable...I swear it felt like she was trying to get that camera down to my stomach.  But no, she stopped at my vocal cords, which were now projected on a huge monitor.  Even I could see that they were still swollen, with my vast understanding of physiology.  (Guess I should have paid more attention in that class in high school!)  She concurred with my surgeon that the trach needs to stay in.  Fine, whatever.

After removing the scope carefully, she congratulated me on finishing my treatment.  She told me something that I had heard before, but needed to hear again.  Sometimes I feel like I make a bigger deal about how I am feeling than I probably should or push myself because I should be feeling better because I'm done.  She explained that I just went through the hardest cancer treatment there is. The hardest.  Some of her patients don't make it through, they give up in the middle and search for other solutions.  It was sort of like a pat on the back, an atta girl moment for me. And she reminded me that I am still going through it.  While my last radiation treatment is now almost seven weeks behind me, I still have at least five more weeks on this roller coaster ride.  It is so hard to feel horrible, then feel better, and better still, and then feel really pretty awful again.  I feel like I have had so many ups and downs the last seven weeks, I'm not really sure which way is up.  Some of you know that I am currently fighting an infection in my mouth, which is caused directly by the radiation, as it changes the pH in my mouth.  I went from being up and around and active, to back in bed and on pain medications, not sleeping because of the pain, feeling a little defeated.  No one can tell me how long it will take to beat this infection, I'm hoping not much longer.  I very much like being on the top of the hill of this roller coaster, instead of down in the valleys.  Waiting for the car to pull into the station, because I am ready to get off this ride.

So, the plan going forward is this...I will have a CT and PET scan in September, see my surgeon in October (and be scoped), see my radiation oncologist in December (and be scoped), and then will continue to see one or the other of them (and be scoped!) every two months.  Assuming I have no evidence of disease (NED...apparently cured is not a word we use) after my scans, I will have another scan in a year, to compare to the baseline.  At two years NED, I will be considered to have a much lower risk of recurrence. 

Well, enough of this for now...it's pain pill time.  Sigh.  Hoping to be in a better mood the next time I post...thanks for sticking with me on this rollercoaster.

Sparkles and love to you all,
Gayle