Friday, July 31, 2015

Cool kids and back to school

I had a high school moment the other day.  Literally.  I opened Facebook to find an invitation to my 25th high school reunion.  (Honestly, where does the time go?)  I looked at the date and realized that my doctor's appointment to remove my trach is two days after the reunion.  So of course, my first reaction was nope, not going.  I didn't want all the cool kids from high school, who I spent so much time wanting to be, to see me with a trach.  It is so not cool.

For about 24 hours, that really bugged me.  I really wanted to see my old friends (and by old, I don't mean age, I mean, these are the folks who got me through those horrible formative teenage years!)  Everyone who matters to me knows what I have gone through this year.  The trach is simply one of the more visible markers of my struggle.  I can't let that keep me from seeing my friends, who, I am hoping, want to see me too, trach or no trach.   Of course I want it gone, I want it gone more than anything I have ever wanted before.  But I realized I don't want it gone because of what the cool kids might think.  No, I want it gone so that I can talk without thinking about breathing and so that I don't have to spend major chunks of my day dealing with the cleaning and maintenance of it and so that I can hug someone without the trach being pushed uncomfortably into my neck.  I want it gone so my little one can sit on my lap and rest his head on me.  I want it gone so I can wear all the cute scarves I have been stockpiling.  I want it gone so I can start to feel normal again.  I want it gone so I can ride the rollercoasters when we take my daughter to the amusement park for her birthday.  I want it gone so I can look in the mirror and not have to stare into it.  There are so many, many reasons I want the trach gone, the least important of which involves the cool kids from high school.  So, I changed my RSVP.  I will be at that reunion, trach or no trach,

In other news, you may have noticed that summer is beginning to wind down and we are thinking about back to school prep.  (Before I go any further, do you remember the way back years when summer didn't begin winding down until the end of August?  It is July 30th...that should be smack dab in the middle of summer.)  I am having a bit of an identity crisis looking at the calendar.  This year will mark my 18th year in the classroom, all at one school site.  For only the second time in my career, I will not be opening my classroom.  The only other time I have missed the beginning of school is when my middle child was born just a few days before school started in 2008.  But here I am, not doing anything to get ready for my new class. of kiddos.  I have no school projects going, I haven't spent any money on classroom supplies (I know one husband who is quite thrilled with that!), I haven't even made any lists.  Who am I???? 

The blessing of this identity crisis, the really, truly sparkly part is that for the first time since my children were born,  I get to play Mommy on the first day of school.  I have never taken my kids to school the first day and I have never been able to volunteer in their classrooms.  I usually have to wait until Back to School night to introduce myself to their teachers and explain why I won't be around much during the year.

The not so fabulous side of this, the spitball side, is that I have no control over what will happen in my classroom this year.  (We all know what a control freak I can be about certain things, but I am not unique in this.  Ask any teacher if they have control issues, I can guarantee that 99% will say yes and the other 1% is deluded or lying.)  Someone else will set up the room to their specifications and put up bulletin boards of their choosing.  Someone else will welcome my students and wipe away their tears the first day and get love notes from them.  Someone else will teach them their procedures for lining up and moving around the room. Someone else will teach them. When I go back to work in February, I will be the substitute teacher. 

I met up with part of my school family this morning and someone made the comment that I must be relieved not to be going back in a few weeks.  I know that when I am in the thick of the school year and I have a million and one things going on, I wish hard for some downtime.  But the truth of the matter is, deep down in my core, I miss teaching more than I ever thought possible.   It is not just a job I am missing, it is a part of who I am.  A part my kids wish I would turn off once in a while, but still, a big part of me.  A few times during the last nine months I have been asked the question, "What will you do if you can't go back to teaching?"  I have yet to come up with a suitable answer because I honestly don't know.  Hopefully, I never have to find out.

Okay, I think that is enough musing for today.  Go out and enjoy the rest of your summer...or stay in and enjoy your air-conditioning!

Love and sparkles,
Gayle

Monday, July 13, 2015

Random Thoughts

This is a list, in no particular order, of some random thoughts I've had since I was diagnosed.  Remember that this is just my experience, in no way, shape, or form do I speak for all cancer patients.

1.  Cancer sucks.  Literally, it sucks the life right out of you.  Duh.

2.  Some people suck.  Not many, just a few.  Most people are awesome, caring and compassionate.  Every once in a while though, I run across someone, be it a "friend", a nurse, a tech, another patient, who just sucks.  I'm glad to report that I have effectively eliminated most of those people from my life.  I can't do anything about folks out in the world, but when it comes to my circle, I don't have to let the sucky people in anymore.

3.  Cancer has freed me.  I have always, always been very cautious by nature.  I don't take risks, I don't put myself in situations where there could be danger, either to my body or my psyche.  Not anymore.  Not that I am going to go out and scale a rockface or jump out of an airplane, but I am looking forward to taking a few risks, putting myself out there.  This blog has been the first step.  I've always wanted to write but I never wanted to put myself out there to be open to criticism.  But if not me, who will document this?  I have no idea what it will lead to, but it is getting me out of my comfort zone.

4.  I don't care what people think.  This sort of started with me when I hit my 40's.  I realized that I had spent far too long worrying about other people and not worrying enough about what I thought about me.  Since my diagnosis and subsequent surgeries and treatments, I REALLY don't care what people think.  Of course, my friends and family are important and I value their opinions, but really, the only opinion that really matters is my own.  I have to be true to me, to my values and core ideals.  I might need to figure out what those values and ideals are now, as I really think they have probably shifted in the last year, but that is part of the process. 

5.  Everybody has a story.  And...every body has a story.  I know that I have often been quick to judge people based on their appearances, I think we all do it, especially about people who stand out from the crowd, people who are different.  I was always one of those blenders, never really stood out from the crowd too much.  The only thing different about me was my height, or lack of it.  But now, my body has a different story.  I have scars, very visible scars.  For now, I have a trach.  (Let's keep our fingers crossed that this goes away soon!)  My speech can be hard to understand at times and I have to keep a towel with me to spit into every few minutes.  So yeah, now I don't blend, I stand out.  And I have quite a story to tell.  I am so appreciative now of the people who ask, instead of giving me the side-eye or quickly looking away if they accidentally make eye contact with me.  One of my favorite moments happened at Trader Joe's a few weeks after my second surgery, when I had finally made it back into the world.  The checker started emptying my cart without really looking at me, and when she finally looked up, she broke into a big grin.  "My nephew has a trach,"  she said.  "Do you hate it as much as he does?"  That's it.  Ice breaker.  She wanted to know my story. 

6.  I hate when people tell me I am brave.  Or that they don't know how I am getting through it.  I know they are saying this out of love and I'm sure that I have said this to people in the past.  The truth is, I'm not brave.  I'm scared shitless and I have been since the moment I found out I needed a biopsy.  Do I put on a brave face?  Yes.  I have to, I have three kids.  Not that I'm not honest with them.  I've told them, in varying degrees dependent on their ages, that I'm scared.  And that it is okay to be scared when scary things happen.  But will it help them to find me sobbing on the bathroom floor?  Nope.  So I don't do it.  I save my tears for the shower and sappy commercials.  And about getting through it?  Honestly people, do I have another choice?  No one has given me the option of walking away from this, so from my perspective, the only thing I CAN do is to get through it.  Sometimes it is minute by minute, hour by hour.  Sometimes it is a day at a time. The way I see it, the only other choice is to give up...which would not have spectacularly good results.

7.  Side effects should be presented like a menu and you should get to pick and choose.  I know, total fantasy, but a girl can dream!  I would have given up my hair in an instant to not deal with my icky sticky glue issue.  Instead, I got big glue issues with just a little hair loss thrown in for good measure.


Okay, I guess that's it for today's random thoughts.  I'm sure there are more percolating somewhere down deep and when they bubble to the surface, I will undoubtedly share them.

Love and sparkles,
Gayle

Thursday, July 9, 2015

It Takes A Village

Written Tuesday, July 7

I know I've talked about this before, but today I really need to articulate these feelings.  The saying "It takes a village to raise a child" is being revised in my house.  We now say, "It takes a village to care for a cancer patient."  I am so incredibly blessed to have an amazing village, one that I really didn't know existed before I got sick.  I knew that there were good people in my life, and I knew that if something bad ever happened, that there was a handful of people that I could count on to help out.  What I didn't know, never really expected, and have been overjoyed to learn, is that my handful of people is so, so much bigger than a handful!

As I sit here writing this, it is the first night of dress rehearsal for the girl's dance recital this weekend.  For those of you non-dance moms out there, this entails three very long afternoon/evenings during which we can take pictures and videos (no pics or videos at the actual recital).  It is exhausting, but also really fun to watch.  This is the first time since her first recital in 2006 that I am not in the theater.  Why am I telling you all of this?  Because within an hour of rehearsal starting, I had ten pictures either texted or sent to me via Facebook.  I know there are more coming.  My village of dance mamas is determined not to let me miss out on a moment, and for that, I am so, so thankful.  These are the same moms who have coordinated a schedule to make sure that the girl has not missed a class or an extra rehearsal or any sort of dance related event, many of them going out of their way after a long night of class to bring her home.  And the same moms who were the first to volunteer to drive me to radiation.  And the same moms who brought food, lots and lots of food, to feed my family while I was in the hospital.  They have sewn costumes, done hair and makeup, cheered her on in my place, all the while making sure I had pictures and documentation of all of her accomplishments. 

What is remarkable about this part of my village is that many of these women are not people I knew very well before I got sick.  Sure, we have been couch surfing for years, trading stories and laughs and complaints about our children, but we didn't really know each other.  Except for a few, we didn't socialize outside the studio, except maybe at a birthday party.  But not one of them hesitated.  Not only did they not hesitate, they didn't wait to be asked to help out.  In fact, some of them wouldn't take no for an answer (you know who you are!)  I am, and always will be, eternally grateful.

Another part of my village is the neighborhood of old friends, people who have know me since the way back, who know all the stories.  These are the folks who have kept my spirits up, who don't mind (or at least say they don't mind) when I text them at midnight from the hospital because I am losing my mind or who send me a text or an email or a shout out from Facebookland every single day.  They are the friends whose psychic messages I get loud and clear, the cheerleaders of unwavering faith.  And they are the friends who let me be angry and rail against the world, the universe, G-d, wherever this dreaded disease originated and they don't judge.  They rail with me, are angry with me, and when I don't have the energy, they are angry for me.  And then, they help me to let go of the anger so I can heal.  I don't have to question whether they will be here because I know they are always at my back.  Again, eternally grateful.

Far and away the most constant and enduring part of my village are my family members.  My mother-in-law and sister-in-law took turns coming in from Virginia to hold down the fort at home while Steve and my mom took care of me at the hospital.  Our schedule is not for the faint of heart, but they managed, with the help of other village members, to keep everyone on track and occupied.  My mother spent hours and hours and hours at the hospital and then generously gave up half her room so that I could come home.  For months she shared her space with me and my oh-so-stylish and comfy hospital bed and medical equipment.  As a mother, I know how much it must pain her to see me miserable.  My brother, poor guy, moved cross country (at my insistence), the day after my first surgery, to start a new job.  I know he has hated every minute of being away, but I can feel the love and support from him from all the way from Maryland.  He has kept me on my toes, listened while I complained, and made me laugh, all the while making sure I am keeping it real.  No hiding anything from him.

Of course, the most important members of my village are my husband and those three little bodies (okay, two little bodies and one who has suddenly shot up inches above me).  I am going to save them for my next post...It Takes a Village, Part 2, since this post has gotten awfully long.

Love and sparkles to you all,
Gayle