All posts by Suzy Smith

Holidailies day one – 2016

The easiest day of Holidailies and I almost forgot to post. Okay, I didn’t forget, I’ve been busy. Researching stuff all day, a meeting this evening, then home to whine that I didn’t want anything we had to eat in the house, and now here I am.

Welcome to Holidailies 2016. This is one of my favorite holiday traditions, even on the years I slack and don’t post all that much, as I love reading blog posts that are like the early online journals instead of how so many blogs are focused to one subject.

This afternoon, after a false start yesterday as they weren’t playing here*, I got to see Tre and Charlie play middle school basketball together.

Their age difference is just enough that they won’t get to play together all that much in high school so it was a delight to watch them. Heck, there were even a couple kids close to their size.

You see, Tre, 13, and Charlie, almost 12, are short.  They’re tiny and they come by it honest. My brother isn’t tall and actually was fairly short until he was about 15 or so, their mother is short, as is her whole family.

Their classmates, and teammates, tend to be much larger than them. In fact, I saw a picture of Tre at a football game (yes, tiny, short kid played JV ball this year) standing with his teammates, who were all kneeling.

He was the same height as them. They also are all about double his weight, but, he will tell you, “I’ve got heart” and then go out and tear up whatever field he is on.

Charlie is the same way. Tonight, I only got to see him play for a few minutes, but he was in your face aggressive on the court and just showing that it doesn’t matter your size on the court.

They won, by the way, which is awesome as last year I don’t think the middle school team won a single game.

They actually beat the team from the school I graduated from. They are rivals dating back to long before I went to W&L and a tiny bit of me feels bad for going against them, but as long as the niblings are at CB, that’s where my heart is.

I had to leave at halftime to cover a Planning Commission meeting. As I swooped out of the parking lot, on my gimp scooter, as that is my transportation in town, I took note of the time.

16 minutes, door to door, without having to wait to cross any of the streets due to traffic luck. My little gimp scooter sure can fly.

Now, imagine this.  Great big woman, bright tiedyed, rainbow colored dress, super bright red sweater, and to top it off, pink hair. Then, add the scooter that is zipping down sidewalks as I giggle.

I’m a sight, but it was so worth it to be able to see them play for a bit.

So, good day, all in all. Day one of December and Holidailies, got to see two of my niblings play, got to fly down the sidewalks, good PC meeting and I’m now home, safe and warm in my house.

Not a bad start to the month. (especially after the dumpster fire that most of November was. Holy shit, can y’all believe how rough of a month it was?)

 

*Yesterday, I went to the school, got into the cafeteria, one of Tre’s friends recognized me, and told me their game was an away game. Oops.

Counting down

I’m watching the clock tonight. One hour to go until Holidailies (yay, I remember I have this site) and one hour until my eight year nephrectomy anniversary.

First, I never got back here to update after my biopsy. I’ll write up that full story so, but in the best news of 2016, I found out I have sarcoidosis and not stage four renal cell cancer. I was supposed to see the pulmonary doctor tomorrow, but had to change it until February.

Good news, but seemingly wrapped in bad. I can survive sarcoidosis. Hell, it might go away on its own. Stage four RCC does not.

So, I spent the summer thinking I was dying. To the point that I set this blog up with information on the about page (now gone) about stage four RCC.  I rewrote my funeral plans and my will.

Tonight, I sit here thinking about all of this, about the past eight years and where I came from. A 33-year-old woman who was diagnosed with cancer that was an “old man’s disease, it can’t be this” to a 41-year-old chronically ill disabled woman.

It changed my life made it so I can do even less, physically, but I’ll take it. Eight years of survival, so far, eight more years with Tony, eight more years of being an Aunt. In these past eight years I’ve found so much life and love and friendship.

Eight years since they cut out rightie.

Damn, even with the dumpster fire that is about to take the office of President, I am sure glad to still be here.

Body Acceptance

I got on the scale at the doctor’s yesterday and for the first time in my life, I really don’t care what it said.

Seriously, I have tried to be body positive for years. I love my body. It carries around my mind, which is what makes me Suzy (or Susan or Suzika or Sue depending on where/what time of my life you know me from.)

My body is short, it is fat, it squishy. It is the external. If you can look beyond me being fat and plain and silly looking you get the good stuff.

The empathy, the love, the loyal as hell friend, the silliness, the dedication, the intelligence, the woman who loves words, the artist, because writing and photography are art forms, the aunt who adores her niblings, the strong dedicated person, the wife to an amazing husband.

That is who I am and so much more. Look beyond me not being your aesthetic perfection and you get the fierce, powerful, nerd who will be your friend for life.

Cancer makes me truly deeply go beyond the fat hatred and not give a shit about a number on the scale, but about who I am. For the first time in 41 years, I really don’t give a shit what you think about my body.

Top of the World

I wished I was smarter
I wished I was stronger
I wished I loved Jesus
The way my wife does
I wish it had been easier
Instead of any longer

 

Yesterday we drove to Virginia Beach, about 140 miles, each way, to see the Dixie Chicks MMXVI tour.  We bought tickets back in June, post CT scan, but before we got the results.

     Back in 2003 when the whole George W. Bush debacle happened with the Dixie Chicks we saw them then. It was a fantastic show, but marred by issues with a family member who had a huge issue with us still going to see them.

     We didn’t have any issue like that this time, just the weight of what I am facing.

     I’m being as strong as I can, but my brain is screaming at me because I’m 41 and facing my mortality. It’s not the easiest thing to do when you’ve lived 80 years and the full life expectancy.

Looking at it from half of that, though? It’s not easy.

I’m facing my fears and looking at myself and what I didn’t accomplish.

I never finished college. I never published a novel. I have never gotten over my fear of flying.

I have never met Bret Michaels. Yes, that last one doesn’t fit in so much, but I have literally had a crush on that man since I was 11-years-old and first saw him on MTV with Poison.

In all seriousness though, there are so many things we put off, weekend trips, going back to visit family,  seeing where Tony is from in Texas, renewing our vows.  So many things and who knows what time is left?

I wished I could have stood where you would have been proud
But that won’t happen now
That won’t happen now

     I feel like I’m leaving behind nothing as a legacy. I have no children. I’ve been competent at my job, but I’m not lighting the world on fire with my journalism or photography.

     I’ll leave behind a husband that I adore and that loves me more than any person deserves to be loved. He is my rock, my soulmate, my other half, and the person who speaks to my heart.

When he’s gone, hopefully decades after I am, will he remember how much I love him? How he kissed me on the forehead every day before he left for work and every night before he fell asleep, how we watched the same dumb sitcoms over and over because familiarity is what I need sometimes?

Will he miss my quirks and anxiety or be grateful to not have to deal with all of that?

There’s a whole lot of singing that’s never gonna be heard
Disappearing everyday without so much as a word somehow
Think I broke the wings off that little song bird
She’s never gonna fly to the top of the world right now
Top of the world

     Will the niblings, my beloved nieces and nephews remember me? These children of my heart are all so young. Four to not quite 17.

I want them to remember how much I love each one of them. How much each one of them means to me. How I remember the silly things that they did, the music they shook their butts to as babies, to the way the ended every story with “Everybody died” making us think they were destined to be goth.

I want them to remember Aunt Pooh holding them in her arms and hugging them tight.

When I got the first cancer diagnosis in 2008 I had Tony take pictures with the kids and me at the pumpkin patch that year. I wanted all of them to have pictures with me in case I didn’t make it to through the surgery.

We didn’t even have several of them yet. Either they weren’t born or they hadn’t become family through marriage, yet.

I need to do a similar photo shoot this year, soon, soon. I want pictures with them so they remember me.

I don’t have to answer any of these questions
Don’t have no God to teach me no lessons
I come home in the evening
Sit in my chair
One night they called me for supper
But I never got up
I stayed right there in my chair

     All these thoughts were swirling through my head last night as this Dixie Chicks song, Top of the World, was played. Natalie Maines’ voice sang out across the amphitheater enthralling thousands of people and I went inward.

As the words rolled across me, tears joined the beads of sweat. The words of a man who has died, wishing that he had done things better, been smarter, stronger, better.

    Facing your mortality at a young age leaves you to have these questions now.  What could I have done better? Could I have shown Tony how much I love him in a better way? Could I have be a better friend? A better daughter? A better sister?

There’s a whole lot of singing that’s never gonna be heard
Disappearing everyday without so much as a word somehow
Think I broke the wings off that little song bird
She’s never gonna fly to the top of the world right now

     As the song build to its crescendo, for a moment, I realized my fear of the future, of what I am facing, of the path I am taking.

After we lost a friend in 2010 to suicide I have been more open about telling my friends I love them. I have never held back on hugging them or kissing them or telling them how much they mean to me.

That is the one good thing to come out of Michael’s death. It made us all look at one another and appreciate each other even more. For that I am grateful.

I wished I’d a known you
Wished I’d a shown you
All of the things I was on the inside
I’d pretend to be sleeping
When you come in in the morning
To whisper good-bye
Go to work in the rain
I don’t know why
Don’t know why

     As the entire arena sang aloud with them, the words washed over me and overwhelmed me for a moment.

‘Cause everyone’s singing
We just want to be heard
Disappearing everyday without so much as a word somehow
Want to grab a hold of that little song bird
Take her for a ride to the top of the world right now

     And, that’s just it. I just want to be heard. I want to be remembered. I want the people I love to know how much I love them.

I still have time. There’s still time to work on this for now.

To the top of the world
To the top of the world
To the top of the world
To the top of the world
To the top of the world
To the top of the world
To the top of the world
To the top of the world

Lyrics by Patti Griffin as sung by Natalie Maines of the Dixie Chicks

Beauty in the World

Even with all of this going on, I realized that I am a lucky woman. I have a huge group of people supporting me through this journey.

Eight years ago when I was originally diagnosed I had two awesome groups of people (beyond my local family and friends) who helped support me through my nephrectomy and recovery.

I have found more and more people from literally all over the world who have my back. I have my local friends, family, and people who know me through my work on the paper, who are behind me.

I have my expanded circle of people from high school and college who are pulling for me.

I have one of my chosen families whom I only get to see once a year in Ohio who have surrounded me with their love on multiple occasions and even more so this time. I lovenb youkall.(I will be healthy enough for shenanigans, punch bowls of doom and scooter of whee in November!)

I have another group whom I have bonded with through us all sharing our lives online before there were blogs. They are my rocks, part of my foundation.

There are so many others pulling for me that if by love, prayer and support alone this could be vanquished I would be cured.

I can’t even get into the support of my family, my bestie, and my chosen family here. These people whom I have been friends with for so many years and their kids, and their kids’ friends, so many of whom call me aunt.

It humbles me. The love and support and beauty of this often harsh world, humbles me.

It’s going to be tough, it won’t be pretty, but we fight with your support behind us.

I love you all. I thank you all for your love and support.

?#?fuckcancer? ?#?nerdstrong?