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,

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 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,

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!),

P.S  For those of you still cheering and 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's okay to stop now!)