Tuesday, July 29, 2014

2014: The Hits Just Keep On Coming!

Yes, that is sarcastic.  2014 was already on record as the worst year for me.  I know it is not for everyone, and I am so glad about that.  But really, I could have done without all this.

So, my GP has been after me to go get a baseline skin assessment done for about 3 years.  I am quite fair, so it makes sense that he wanted me to do this but I kept putting it off.  But then I noticed a few things - a few minor changes - that made me go ahead and schedule.  Last week, I went and had a very nice doctor look over every inch of me.  FUN!  She took one of the "changes" off using lidocaine and a razor, and told me I would have results within a week, maybe sooner.

My results?  They ended with "-oma"...yep.  In the year that already sucked beyond all expectations, now I also have skin cancer; squamous cell carcinoma, to be precise.  I will be fine, and I already have another procedure scheduled next week to have the area around the biopsy removed so as to make my skin cancer-free.  I'll have to be even more hyper vigilant than I have been about my skin care, and I'll have to get checked more often.  I'm okay with all of this.  SCC is common, and they know how to deal with it.  And if my body was going to do this, at least it is in the outer layers of the cells that make up me.  I have too many friends and family who have had much worse diagnoses, where the insides of them betrayed them.  Mine is just a teeny spot on my skin.  We're attacking this with our usual vigor, and I'm looking forward to it being in my rearview mirror.

But how much does 2014 suck?  It's 1000%.  This year sucks beyond mathematical possibility.  It may as well be Imaginary Number%.  I HATE THIS YEAR.  I hate it.  I'm so over it.  How ridiculous are things when being told that I have cancer is NOT the worst thing that has happened to me this year?

I cannot hibernate for 5 months waiting for next year, but I want to.

At the end of the day, I'm grateful to my doctor for pressuring me to do this, I'm grateful to my husband and family for not freaking out when I told them, and I'm grateful that I can have this taken care of with a minimum of disruption to life.  Whether or not I've been through "enough" this year, my kids certainly have, and I can't be the mom who had to tell them about their brother, and then almost 6 months later tell them that I have cancer.  They have been through enough, so for now they know that Mom had her skin checked because it's important to take care of yourself, and that I have to have a little more skin removed, and that they have to wear sunscreen every day.

So please, get your skin checked and wear your sunscreen every day.  

Thursday, July 24, 2014

Times Like These

In the last few weeks I've had several band practices.  Playing music is without a doubt an important part of my healing process.  We are playing a fundraiser for the Arc of Northern Virginia.  The Arc is a national organization with state and local chapters which offers support and assistance to families and individuals with special needs.  When we needed help navigating the very murky waters of the EDCD waiver process, they pitched in and helped us cross the morass of conflicting paperwork requests.  When Connor passed, we requested that people make donations in his name to them, and you all did - so, so much.  I'm still not done the thank you notes, but I am working on them.

Anyway - band practice - so we were running through some older songs.  I started thinking about music (that happens a LOT with me) and then about Foo Fighters (also...happens a LOT) and then suddenly a thought crossed my mind that many, many people who read this were at Connor's service, and many, many people who read this don't know why I picked the music I did for his service.  So I thought, I should share why I picked those songs.  So here goes...

We had a lot of latitude with the music, and Lee left it mainly to me because he knew it was important to me.  I picked readings from Scripture with the assistance of our pastor, and one of the ones I selected was Matthew 5:14-15 - you are the light of the world.  It was a reading at our wedding, one I have always loved.  Connor was a light for the world, even with his limitations.  So I also selected "You Are the Light of the World" from Godspell as the recessional song.   You are the light of the world, but the smallest candlestick ain't much good without a wick!  It's funky and jazzy, and I wanted something very upbeat for everyone as they left the sanctuary.  While this was a sad event, it wasn't our inclination or nature to want it to be dirge-y all the time.  We wanted the service to be bright, celebratory.  We knew the inherent sadness of what had happened but we also knew that celebrating him was the only right way to do this.

Several weeks later, on the way home from piano, Drew told me that he thought it was inappropriate.  Yeah?  TOO BAD, as Bad Cop from the Lego Movie would say.

I wanted something for Ms. Megan, Connor's therapist, who couldn't be with us.  I landed on "On Eagles' Wings" which is a well-known hymn, and the song she asked me to sing at her wedding.  The congregation sang that together.  It talks about being scared and being protected and lifted up - all things I think we were feeling.  It helped me to have a little bit of something for her there.  We miss her, and hated telling her on the telephone more than almost anyone else.

Then, the real outlier, and the song that was not even remotely traditional.  It's not really a mystery that I have a serious, serious obsession with Foo Fighters, right?  In 2004, Connor was born and soon after diagnosed, and Lee and I sort of withered away for a while trying to learn how to live this new life we had.  With all the appointments with specialists and doctors, and early intervention meetings, I spent quite a bit of time in the car.  My mainstay radio station in the car was DC101, and for some reason during that summer they had "Times Like These" from One By One in heavy rotation.  It wasn't a new song, but I guess they just liked it a lot or divine intervention was happening.  Either way, I found it to be exceptionally helpful.  It's times like these you learn to live again.  It's times like these you give and give again.  It's times like these you learn to love again.  It's times like these - it's time and time again.  Yep.  That's pretty much what I needed in a nutshell.

The morning after Connor died, I laid in bed and listened to it over and over, but the album version was a full-on rock song.  It just didn't feel right.  I pulled up a web browser and found the video for the acoustic version.  There it was.  Just what I wanted.  So I went to iTunes, and guess what?  Not available in the US for purchase.  But I didn't give up.  I called my friends Courtney and Dave, both tied into the music community, and said, "I need this song.  Can you help me get it?"  And they did.  Eventually (and a little ironically) Courtney got it from...one of the DJs at DC101.

Anyway, that's the story of the music, and the meanings behind them, for Connor's service.

Friday, July 18, 2014

Old Friends...

Sat on their park bench like bookends...

(sorry it's blurry - 7 year old "photographer")

Back in high school, I finally stopped unilaterally despising the music my parents listened to and finally gave it my own listen.  I had been so consumed with finding my own path that I was closed off to things I eventually embraced.  One of them was Simon & Garfunkel.  And Paul Simon gave me the alternate title for this posting - Still Crazy After All These Years.

On the left - Kristen.  My dearest, closest girlfriend from high school.  Outside of my family, knows more about me than anyone on earth.  You know when you first meet someone, and your brain clicks in and says to you, "Yeah, hold on to that one.  They are gonna be good for you."?  That's what happened to me when we met freshman year of high school.  It was rocky at times, and we've argued, because everyone does, but it's all in the past.  She accepts me with all the extraordinary faults, and has celebrated my weirdness since day 1.  When I picked a college, I chose University of Virginia.  Basically, I picked a school that was going to essentially surround me with people like her all the time.

On the right - Sean.  When I was 15, I was in Godspell at his high school, and he was in the pit band, which was essentially only 5 people.  First band cue practice we all met - cast and band.  It's possible that within that day we became friends, but it was certainly cemented within the run of the show.  One of my favorite memories of high school is before school each day senior year (I had an exchange class at his school) I would arrive, head to the library, and sit at the same table every morning with other students waiting for the first bell.  He was always there with me; or maybe I was always there with him.  Who knows?  But we were simpatico, and always have been.

We all went to Governor's School together - one for academics, one for vocals, one for music.  We've orbited around each other for decades now.  I moved away, then Sean got married, then Kristen did, then I did.  I had them both in my wedding.  Then Sean and his wife moved away - way away, and it was much harder to be in touch.  But when it mattered, we did.

Back in February, I called Kristen on a Saturday morning.  I know she answered in a second because we don't talk to each other on Saturdays.  We talk in stolen 3 minute increments on weekday mornings.  Like moms do.  Sean I hadn't spoken to on the phone since, I don't know - 2005?  We'd communicated mainly via email and facebook.  I really hated that he found out what happened on facebook, but I had run out of ways to call people that day.  Kristen called or texted every day and was with us at the service.  Sent me hilarious cards to remind me to laugh every once in a while.

Sean sent me a message on facebook at 11:00 the night Connor died.  I was on my iPad, unable to sleep.  We ended up chatting online for 2 hours.  I told him early on the conversation that I was really having a hard time dealing with the idea that this day was going to end.  It was so hard to think of the day he left us leaving, and he got it, and he kept me talking to him through the change.  I finally made myself shut off at 1:00 am, but still couldn't sleep.  After 45 minutes, I gave up, booted up my laptop, and wrote the first posting on this blog about what happened.  That posting got far more attention than anything I have written.  As of today, it has over 3000 viewings.

So when Sean told me he was going to be in Pennsylvania in July, it was something bigger intervening.  Kristen and I had already made plans for a mid-July day at Sesame place with some of our children and the Imagination Movers.  Without considering anything at all, I said, you should join us.  He did.

Sitting on that park bench, even slightly out of focus, you can still see the young us and the current us together there.  I am bracketed by people I have been lucky enough to be loved by for 25 years each.  I really, really hope they know how much I love each of them too.

Wednesday, July 09, 2014


I'm a reader, and always have been.  When I was much younger, I would leave the bedroom door open, so that after "bedtime" and lights out, I could read by the light of the hallway lamp that my parents left on for my brother and me.  Of course, in terms of the health of my eyes, this was not the best choice.  Alas.  Too late to change it now.

In any case, once, when visiting my cousins in Greenport, NY, I was introduced to a book called "Wren" by Marie Killilea.  I was still quite young, under 10, I suppose, given when they moved away from Greenport.  This book was non-fiction, and the story of Mrs. Killiea's daughter, Karen, born prematurely, which resulted in her developing cerebral palsy.  At the time Karen was born, the doctors recommended that she be sent to an institution and forgotten there as she would never be able to learn, communicate, or care for herself.  Karen's parents said forget that, took her home to her family, and she grew up and thrived and learned and communicates and cares for herself.  Yes, I know that I changed the tense there, but that's because Karen is still alive today (http://en.wikipedia.org/wiki/Karen_Killilea).  This was the first time I read something about special needs.  I was enthralled - look at what this family is!  Look at what this little indomitable (I'm not sure I knew that word then) did!  I know I was impressed with them, with her.  I'm not even sure if my parents ever knew this.  I bet they did.  They always knew way more than I thought they did about my life.

And I re-read it, probably 20 times.  I was a big re-reader as a child, and to a certain degree I still am.

At age 30, I picked up the new book by an author I favor, Lorna Landvik, and started to plow through it.  It's called "Welcome to the Great Mysterious" and about sisters (one of whom has a son with Down syndrome).  A subplot in this book is about the son/nephew and his best friend, who has CP, and who dies during the pages of the novel.  I was pregnant with Connor when I read this, and Lee came in and found me in tears reading this book.  What's wrong!?  Oh, this stupid book...

This one I have not yet re-read, but it's still in my small actual-book library.

Both these books must have been somehow placed in my range to help me prepare, not that I could ever have properly prepared myself.

It's been 5 months.  Well, a little over that.  Lately, we've all been having our own funks, and I imagine that it's related in some way to Connor.  Drew decided after months of growing his hair into an epic nest of insanity each morning to have us give him a buzz cut.  "I want a haircut like Connor's," he said simply to Lee.  So Lee did it, and Drew was TRAUMATIZED.  Seriously.  He hated it.  We talked him through the lack of tangles (which had been an ongoing problem), the quick dry situation he was now in, the fact that putting his swim cap on now will not hurt.  And of course, the old stand-by - it's hair - it will grow back.  He's come around to it.

Yesterday morning, I sat on the sofa with Tucker snuggled in to me, and Drew snuggled in to him, and I rubbed the top of Drew's head.  After about a minute, the message finally made it's way from my fingertips and palms to my brain - this feels as it did when I would rub Connor's head - and I clenched my jaw and fought the tears welling in my eyes.  I tried to tell Lee later, and he said, before I could even finish my thought, "It's feels like Connor."

There are so many things we are just not prepared for.  I am blessed that the people I know will allow me to contemplate my bellybutton while I work through this at times terrifying grieving process.  You don't know when you wake up in the morning if you will be having a good day or a bad one.  But you have to get up.  I have to get up.