Friday, May 20, 2016

This is 37

Monday was my birthday. Yay for more birthdays!
I had lots of friends send me wishes via facebook, and so I wanted to make sure I said thank you.
My thank you post turned out to be pretty long, long enough in fact to become a blog post. So here you go, this is a straight copy & paste job!

Thank all for the lovely wishes. I've been having a great day so far - the kids made me a banner, blew up some balloons and made cupcakes. I finished the book I was reading (that was due today). We went to the library and the grocery store. Now we are getting ready to head out to Miss M's softball game, where we'll eat pizza and enjoy our cupcakes. It's not fancy, but it will be a good birthday dinner none-the-less.

Now, for the serious part.

I'm 37 years old. I can't lie, I wasn't sure that I'd see 37. I didn't share this widely at the time, but when I was diagnosed, based on my specific cancer, age, and treatment, the statistics said that there was a 27% chance that I would be alive in 5 years. That's really hard to hear.
While I know I'm not a statistic, and it didn't feel like a dramatic death sentence, it still felt like a punch in the gut to hear. I never thought "when I'm 37," it has been "If I get to 37."
 

I know sometimes when I say things like that to Eric, it is hard for him to hear. I never said it to be depressing or dramatic, but it just what was for me.
 

It was hard for quite some time for me to plan in the future. I'm sure it was a defense mechanism, but I stopped thinking about long term plans. I stopped thinking about how I would spend retirement, or what I would do after all the kids left the house. That was hard to do. Because thinking about it would always end with my brain coming back to that 27%.
 

So I focused on doing. Doing things (when I could, when I was able to).
 

But I'm here. I'm 37. And that tightness in my chest feels a little less tight. I'm starting to just be more, instead of doing things, instead of just filling the time.
 

I know that none of us really knows what tomorrow brings. And I know some of you are dealing with a lot more than what I do. But it was still hard. And felt like a heavy burden to carry.
 

I'm glad I'm turning 37 today. It is a birthday that some of my friends didn't get to celebrate. But I'm here. I've got great friends and family. I'm here. I'm living. And I'm working on being. And I'm working on worrying a bit less. And I'm working on trying to just enjoy the here and now instead of letting the little things nag me or the big fears consume me.
 

So, happy birthday to me. And happy unbirthday to all of you, who helped me get here through love and support and humor and all the many ways you are blessings in my life.
 

And an extra shout out to the husband Eric - my rock, my protector, the guy who would walk through fire for me. And my mom Ellyn, who never makes me feel bad when I have to call her crying, who has supported me always and has always been there for me.

 So here we go. This is 37.

Friday, May 13, 2016

Reading, Justin Cronin, and Chemobrain

Sometime back in 2010, I was listening to the radio, and I heard an interview with this author Justin Cronin.

At the time I didn't know who he was, had never heard of him before. But the interview hooked me in. (I think the interview might have been Terry Gross, but I'm not 100% sure).

Cronin was talking about how his new book, The Passage, came to be. He would run while his daughter biked and they talked books and plots and what they should write about. His daughter was nine and naturally wanted a book where a nine-year-old girl was an important character. And so The Passage was born.

I knew it was a horror book. I knew it had vampires/zombie things in it. I knew that wasn't quite what I was reading about at the time. But when I heard that interview, I was sold. I needed to read this book that I was hearing about. Mostly because I was sold on the father/daughter creation of it.

Plus, we had a big trip coming up - a train trip from Chicago to Boston and so I would have a lot of time to kill. The Passage, when I looked it up, was a huge book and would be perfect for the train. So I downloaded it onto my new e-reader and dove in.

I. Loved. That. Book.

I couldn't put it down. I'm pretty sure my family got annoyed with me saying, "just let me get to the end of the page and I'll be there!" When it ended, I wanted to cry. I needed the second book right then. Of course, the first book had just come out, so the waiting game began.

Then April 2011 hit. And cancer hit. My own personal nightmare, which had nothing to do with vampires or vampire-like creatures, or anything you find in a horror books played out in front of me.

During treatment, I all but stopped reading. I was physically incapable of reading - the meds messed with my eyes very badly and words looked like they were dancing across the page. I tried some audio books. I was mentally incapable of reading. I couldn't remember anything they had just said. I basically gave up on reading.

This was hard, I've always been a reader. Books, more than once in my life, had been my best friend. Reading was a vital part of my life - I was always reading.

But treatment ended and my eyes got better, so I decided to try to read again. And the chemobrain raged in full force. I just couldn't do it. I couldn't concentrate. I couldn't remember the line I had just read. I couldn't remember which character was who.

Again, frustration hit.

It was suggested that I go back and start to read children's books. And I did. And I could keep track of them better, and I worked my way up to books aimed at middle schoolers. And the books were good, but not exactly what I wanted to be reading. I know middle school is tough, but one more bad lunchroom scene and I was going to lose it.

So I kept trying to go back to "adult" books and I just couldn't. I couldn't keep up with them. It was too much for my brain.

But.
But.

The Twelve, part two of the series, came out late 2012. And I was going to read come hell or high water.

I can't tell you how many times I restarted that book. How many pages I had to read, then reread, then reread again. How I would sometimes google characters names to place them in my head when I forgot who they were.

But I was in love with the series, and the second book, despite me having lots of trouble reading it, didn't dampen my love for the story or my desire to know what happened.

It took a long time, but I read, finished, and remembered what happened in The Twelve.

For me, this series will be a direct measure of what I could do before cancer, and what I could do after cancer.

The first book I sailed through. The second book almost felt like it was in a language I didn't know very well. But, when I got through it? I felt so accomplished. Take that cancer. Take that chemobrain. I finished a book!

Which takes us to today. In a week and a half, the third (and final) book comes out. The City of Mirrors. I have already ordered the book. I can't wait to get my hands on it. I plan on reading nonstop until I finish. Okay, I can't actually read nonstop because people in my house need to be driven places and fed and have laundry done and all that jazz, but I'm going to read it as nonstop as possible.

But tomorrow, I'm heading into the city to attend BookCon.
And Justin Cronin will be there.
And I'm going to do try really really hard to get his autograph.

He doesn't know it, but his book, about an apocalyptic time in America was perfectly time with my own personal apocalypse. The first book will always be what I read before cancer. The second book will always be what I read after cancer with really bad chemobrain. And I'm hoping the third book will be the book I read after the chemobrain is a lot better.

One book series to help map what I could do, what I couldn't do, what I could work hard to do, and what I could do again.

And I can't wait.

Books for me have power. There is power in them, whether it's a light beach read, a heavy dark novel, an account of history, fantasy, fiction, nonfiction, whatever is written on those pages? It's powerful for me. I love books. I love reading books. As I get older, the types of books I read grows and grows. I make a point to read every single day.

So when I think back to the time that cancer stole that from me? It's so hard. To know there was a time when I walked away from reading because it was too much? That's a hard time to remember.

But coming back to it, no matter how hard? That makes me feel good.

So tomorrow I shall walk around all day, surrounded by books. I can't wait to see all there is to see and I can't wait to meet authors that I've read before. But, I'm really looking forward to seeing Justin Cronin. His books holds a special place in my heart.

So wish me luck, send me get-Cronin's-autograph-vibes-but-don't-scare-him-with-your-enthusiasm-vibes.

=)


Wednesday, May 11, 2016

#100DaysOfGetBusyLiving

Orange and pink TulipsSo, I've been home from CancerCon for a bit now, but I came home with so much energy (mental only. I'm still trying to catch up on the physical energy!) and excitement. Which has been a great thing, but of course, leads to this: what next?

What next indeed.

Where to go from here?

I have big ideas. And big dreams.

But.

But.

I'm busy being a mom, wife, and granddaughter.

That's not a bad thing. I enjoy my role as a stay-at-home-mom. I like homeschooling the kids. I enjoy the days we get together. I also know that my time of being busy in these things is quickly approaching an end.

So when I think about possible career paths and being more involved in advocacy, that's a few years down the road. That's for when the kids are all in school. That's for when the kids will need me physically less.

And yes, that will be quite the bittersweet transition for me.

That is all in the future though. Right now I'm here.

So I was thinking. And thinking. And thinking a little bit more.

And it hit me.

Me at CancerCon
Inspired by Stupid Cancer's charter "to ensure that no one affected by young adult cancer go unaware of the age-appropriate support resources they are entitled to so they can get busy living" and by Dragonfly Angel Society's #100DaysFearlessOfCancer, I decided to start my own 100 days project.

And so, starting next Monday, I will begin #100DaysOfGetBusyLiving. 

The key word in there is living - not busy. 

This isn't going to be 100 days of being busy and running around like crazy.  A. I am already busy enough. B. It would break me if I tried. 

It might seem contrary, but my goal is to have more fun, slow down a bit and do things that I enjoy, and just try to be present more. 

Being busy living might mean curling up with a good book. It might mean laying in the yard with the kids deciding what clouds look like. It might mean taking a nature hike and snapping some photos.  It might mean a trip to a new place. It might mean trying a new recipe. Or it might mean finally starting to do yoga like I've been saying I would since, oh, maybe a year ago?

It's all about living. And being. 

I can't just jump up and pull an Eat, Pray, Love or a Wild type trip. But I can still be here and make every day count - even if it's just the little things. Flowers on the table, playing good music while I fold laundry. Something. Anything. This is what I can do. 

So next Monday it begins. An arbitrary date? Yes and no. I could easily say let's start now! But next Monday is my birthday. I will turn 37 years old. And what better way to kick off the next year of my life than by getting busy living? 


Because I'll be honest with you, 5 years ago I didn't actually think I'd see 37. I didn't think I'd get that much time. I know that sounds dramatic, but it didn't feel dramatic in my head. It just felt like that's what would be. 

But it wasn't. And I'm here. So now, I've decided, it's time for me to get busy living. We'll see where these 100 days take me. Because I'm ready. 


Monday, May 09, 2016

Need a night out?

**please note: parts of this post are sponsored. I'm being given tickets in exchange for sharing this information with you, however, as always, all thoughts and opinions are my own!


Hey Chicago friends! Are you looking for a night out? Because we've got some pretty fabulous shows in the area that you should know about.

I'm pretty excited because I always love heading into the city to see shows. For me, a stage show is just magical. And truth be told, we don't see them often enough for my tastes, but life is busy and it's not always easy to get into the city. But the times we manage to make it, it is always well worth it.


The King and I

The King and I is running now at the Lyric Opera House.  Didn't buy your tickets yet? That's okay. They are running a special promotion right now.
You can get half off tickets to any Tuesday, Wednesday, or Thursday night performance of the King and I if you use the code SIAMBLOG when you purchase your tickets.
So you should definitely buy some tickets and "get to know" The King and I. (See what I did there? And yes, I will be singing Getting to Know You the rest of the day and I'm okay with that!)
I've never seen the King and I on stage before myself and I'm pretty excited to be able to finally say I have because I love the music from the show so much.

Please see lyricopera.org/promo for full offer details. Code expires 5/19/2016. For more information on The King and I visit www.lyricopera.org/kingandi

Cinderella

This week, the Joffrey Ballet is kicking off Cinderella. This is the final show of their 60th season it's running from May 11 to May 22, so get your tickets quick before the the coach turns back into a pumpkin.
But seriously, I've seen the Disney version, I've seen movie versions. Last year my husband took my downtown to see the Rodgers & Hammerstein's version. I've known the Cinderella story since childhood, but I'm excited to see how the Joffrey Balley takes it and makes it it's own. I have hopes which I know won't be disappointed.
Tickets are available for the show now and you can buy them on-line at joffrey.org/cinderella.

Van Gogh's Bedrooms

Speaking of heading downtown, tomorrow the kids and I are going to hop a train and head on down the Art Institute. Tomorrow is the last day of the special Van Gogh's Bedroom exhibit. Ever since it opened I've been saying that I want to go down, and in what seems fitting, I'll finally make it on the last day! My 13 year old has already been with some friends, but the 10 year old and I will be looking at it for the first (and last) time. In general, I love the Art Institute, but I'm especially excited to visit this exhibit. Plus, it's always nice to get out of the house and change up the routine a bit!
Anyway, if you have time in the next two days, you should head out and see Van Gogh's Bedrooms because I've heard from other people that it's well worth it!

Thursday, May 05, 2016

All the Feels at CancerCon

Last weekend, I bravely hopped on a plane (with the aid of xanax and a meditation app) and flew out to Denver, Colorado and attended my first CancerCon.

So. Yeah. I did actually go to a conference about cancer.

Yes, it is a real thing.
No, people didn't wear costumes.
Yes, it was fun.
Yes, I want to go back.

So, before I went, I thought I'd come back and share a lot of information. I thought I'd come back and feel educated. It was almost as if I was gearing up to go back to school.

While I did get a lot of information, and I did learn some new things, there was so much more to this conference than I knew to plan for: the richness and the depth of the conversations with other people that I would have.

I mean, I knew I'd have to talk to people. I knew I'd get to meet people, but I figured it would all be kind of superficial. I mean, there were over 600 people there, so many things going on, sessions to attend, SWAG to grab, etc, etc.

And somehow in the midst of all of this, there were some really deep and powerful conversations, at least for me.

Maybe, because everyone there is connected to cancer so the small talk was skipped? Except, there was a fair amount of talk about the weather - lots of snow, some rain, many clouds, and the sun came out just as we left for the airport ride home! But still, you had the standard my name is Brandie. I'm from Chicago. Oh yes, I was afraid I'd die.

There aren't many people you get to jump from your name to a big fear with. And no, it wasn't depressing - I realize it may sound like it, but it wasn't. In fact, it was the opposite.

I left the conference feeling lighter. And feeling stronger. And with some truths realized that were uplifting.

I met a lovely woman Cindy. Cindy left me feeling peaceful and calm. She helped me see a strength in myself I hadn't seen before. And she encouraged me to take some time to look back to see how far I've come. I've been avoiding this. I didn't want to look back because I knew what I'd see - the same thing I've been saying around these parts - that I'm still stuck 5 years ago. Except, I'm not. I'm actually not. I know, I'm shocked too. That's not to say I'm not stuck in some sense. And that I don't have more progress to make. All of that is true. But it's also true that I'm human and while some days feel like two steps forward, one step back, that means the net gain is one step forward. And I'm doing that - even when it doesn't feel like it. Amazing!

I ate lunch with Kari. Kari was one of those wonderfully energetic, just exudes energy, and makes you want to just sit by her and soak it all up kind of people. After talking to her for a while, I was ready to just go out and change the whole entire world. I often joke that I wish I could bottle my 10-year-old's energy up and just have half of it. I think Kari figured out how to do that. I want to be that kind of force in the world. It might take some serious naps and caffeine, and I'll have to do it my way, but watch out world. I'm ready to make some waves. They might be teeny-tiny ones, but they'll be mine none-the-less.

This is just the tip of the iceberg. I could tell you about Jonathon, and Lori, and both Jennifers, and Matt, and Melissa, and Colleen, and Dan and several dozen other people.

I could tell you about tears and laughter - sometimes only seconds apart. I could tell you about all the hugs I received and gave. I could tell you how more than once I would (literally) squee as I saw people I've connected with on-line before this conference in person, and how I'd run over and say hey! I'm a stalker - but not really - on twitter/instagram and can we take a picture? and how everyone was like okay! I could tell you how I got a makeover, and while when I looked in the mirror and felt really pretty on the outside, after talking to my hair stylist and the photographer, I felt really beautiful on the inside too. I could tell you about how I left wondering, once again, if I have a book inside me. I could tell you about playing duck, duck, goose. I could tell you several hundred other stories. And maybe someday I will.

But today, today, the most important aspect of CancerCon to me is the connections I was able to make with people. Connections with new friends, deeper connections with old friends.

Which might just be perfect. Because 5 months ago, I decided my word for the year was connection. I didn't walk into CancerCon thinking about that, but I certainly walked away with the word buzzing around my head and my heart.

The weekend was about connection. And all the feelings that made me feel. The love, the laughter, the sadness, the tears, the fatigue, the energy, the empowerment, the shock, and the understanding.  All these feelings led to the connections.

It was amazing.
Truly amazing.

Tuesday, May 03, 2016

5 years ... and one week


I had every intention of writing and sharing last Tuesday.
But life.
So today is better than never, right?

So. 5 years (and one week ago) I heard the words "You have cancer."

5 years.

I know, 5 years is supposed to be really exciting.

Like celebration exciting.

And yet, to be honest with you, I wasn't feeling any of it.

To be really honest, I actually kind of felt depressed about it.

I realize this might seem counter-intuitive. I realize there are some people who are scared they won't see the five year mark and are jealous of where I am now. I have friends who are no longer with us who never saw the five year mark.

I'm not trying to downplay the fact that I am lucky enough to still be here. Five years later.

But when I think about those who aren't here. Or those who are worried they might not be here in five years, it weighs heavy on my heart.

I didn't do anything special to still be here. The science that we have worked for me. There are people who at the same age, with the same cancer, with the same stage, with the same grade who the science didn't work for.

I am not still here because I am strong.
I am not still here because I stayed positive.
I am not still here because I did cancer "right."
I am not still here because God loves me.
I am not still here because I am special.
I am not still here because of any of this.

They are not here because they were weak.
They are not here because they were negative.
They are not here because they did cancer "wrong."
They are not here because God didn't love them.
They are not here because they weren't special.
They are not here because of any of this.

We have science to try to treat cancer.
Sometimes it works.
Sometimes it doesn't.

This makes it hard for me to celebrate.

Let me be clear: I am grateful. I am happy. I am glad.

But to celebrate? Celebrate something that I really had little control over? It's been hard for me to get to that point.

So, my husband and I decided over the weekend, we'd go out and get a drink. Say cheers.

At the last minute, I almost said screw it, let's just get in pajamas and stay home, but I didn't. And we got to the bar, I was surprised to see my family there - my mom, dad, sisters, and brother-in-laws. I yelled. I cried. I hugged. And I instantly felt my spirits lift.

We sat, we ate, we talked, we had a drink. A friend texted to see if she could meet us there too.

More laughter, more talking, more eating, a second drink.

I can't lie, it felt good.

I walked in that night feeling sad and overwhelmed and like it was hard to celebrate.
I walked out that night feeling happy and grateful and glad we did celebrate.

Yes, I am still mourning friends.
Yes, I have sadness for those who are dealing with illness (or other things).

But.

But.

I realized that at the same time, I can feel happy for where I am.
I can celebrate these milestones.

I don't need a big huge party. I don't need gifts. But to have loved ones around me, to say cheers, I'm here to have this drink,  that was exactly what I needed. I needed this Saturday night gathering and I didn't even know it.

I can celebrate these moments.
I can embrace these anniversaries.

This doesn't mean I'm forgetting about others who couldn't be there or couldn't have that moment. Because, I don't. And don't ever intend to.

But, you guys? It's been 5 years. And a week.
5 years.
That sometimes seem like 5 days and other times feel like 5 decades.
5 years.
Yep. I can raise a glass to that.



Before I close, I want to remember those who I'm missing
Jenny
Susan
Rachel
Jada
Barb
Dave
Lisa
Arlene
Mary
Ginny
Seporah

Katie

xoxo