Monday, June 13, 2016

On getting my heart broken

Lately, my heart has been broken.
And broken again.
And broken once more.

And I've spent so much time wondering why.
Why do bad things happen?
Why are we so quick to grab our pitchforks?
Why do we not show more compassion?
Why does our anger and hatred run so deep?
Why do I care?
Why do some others seem to not care?

No, this isn't related to anything in my house.
No, this isn't related to cancer.

But current events lately?

They are slowly breaking me.
What fresh hell will we wake up to tomorrow?

It seems to me that even though witch hunts fell out of favor, that even though burning woman at the stake is frowned upon, we as a society have figured out a way to figuratively burn women at the stake.

Make a mistake? Uproar.
Act human? How dare you.
You are not a perfect mother? Then why the hell did you even have children?
And if your child leaves your eye sight for one second? Well, suddenly everyone else has NEVER lost a child and has never felt that panic and take your child away because SHAME ON YOU.
Get raped? Well, why didn't you prevent it better?

On the other hand ...
Oh you raped a woman ...
Well, do you look "nice"?
Are you an athlete?
Do you come from a "good" family?
Oh, well, here's your slap on the wrist and now we will all mourn for the things you have lost. Because maybe now you can't even eat steak anymore, and oh dear, what ever shall we do to make you feel better now?

And then we throw in the oh, you don't like who that person kissed?
Great. Here's a gun that fires more rounds than anyone should ever have a need for.
When the anger gets to be too much? Go and shoot up a bunch of people.
Because they are something that you don't agree with.

The country will mourn.
We'll pray.
We'll send good thoughts.

But nothing will change.

In a few weeks, another woman will make a mistake and be raked across the coals.
Another woman will get raped and people will blame her clothes, what she drank, where she was, and her sexual history. (Or worse, no one will listen and nothing will be done.)
Another man will get a slap on the wrist for raping her. (Or worse, he'll have nothing done because she won't report it, or she won't be believed, or the police won't press charges, or the DNA kit will be placed on an ever growing pile that isn't being tested).
Someone else will take a gun to a bar, a movie theater, a shopping mall, a street, a school, a beach, a concert, a sporting event, somewhere, anywhere.

There is so much hate in this world.
There is so much us vs. them.
There is so little compassion.
There is so much anger.
There is so much division.
There is so little understanding.

And it just feels like we, as a society, will ever do anything to stop it. 
Sure, we throw out platitudes. As if that's ever made a difference.


I don't know where to go from here.
I don't know what to do.

I want to be a voice that speaks out.
I want to be a voice that is compassionate.
I want to be a voice that is understanding.
I want to be a voice that is caring.

I want to stop the hate.
I want to stop the anger.
I want to stop the violence.
I want to stop the hurt.
I want to stop the pain.

It's all rolling around in my head. All these thoughts, all these feelings.
I can't imagine how people who are in the thick of things are feeling about this.

It's so hard to wrap my head around. I just don't understand it. 

Sunday, June 05, 2016

National Cancer Survivorship Day

Today is National Cancer Survivor Day.
Per definition "An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition." from the National Coalition for Cancer Survivorship.
The minute a doctor tells you that you have cancer, you are considered a survivor. You remain a survivor for the rest of your life.

Many people who are survivors struggle with that term. Even though the term was coined to include those who have incurable cancer, or those who are in active treatment, many people hear survivor and assume that it means a person who completed treatment and no longer has cancer.

And so survivor can feel like an awkward term to call oneself, especially during treatment, especially if you know the cancer you have will probably be what kills you, especially if you do not feel that cancer is a gift.

Not long ago, survivor was expanded to include the family members/care givers of the person with cancer. Many of these people have trouble calling themselves survivors too.

For me, it is a strange place to be in. I'm a "survivor" but I didn't do anything special to be a survivor. I did not do anything to get my cancer and I didn't do anything special to make it go away. Science happened. Something happened in my genes, and some of my cells turned into cancer. Science happened. The doctors gave me standard care and at this moment, the doctors can't detect cancer in my system anymore.

But other people in the same boat, go through the same treatment and the story ends differently. It is hard to accept that it's just luck of the draw.

We as people want to grab onto something. "I don't eat x, so I can't get cancer. I meditate, so I can't get cancer. I sleep 8 hours a day, so I can't get cancer. I never drink y, so I can't get cancer. I pray every day, so I can't get cancer. I exercise, so I can't get cancer." It's natural. IF we can isolate the ONE thing that causes cancer, we can protect ourselves, and our loved ones.

However, cancer has existed long before our modern lifestyle. It predates sugar, and gluten, and pollution, and electricity, and we could keep going and going and going.We have found bodies with cancer that are 3000, 4000, maybe even 7000 years old. 

That's not to say don't be healthy. Because you should be healthy. I think we all know that by now.

And there are ways to reduce your risk of cancer. Reduce. Reduce. Reduce.

There are not ways to eliminate cancer. 

We haven't figured out how to do that yet. 

I wish we had. But we haven't.

So, today on National Cancer Survivors Day, think of your friends and loved ones who have/had cancer. Think of those who are still here, going through treatment. Think of those who are still dealing with the after effects of treatment. Think of their families and the people who care about them. And think of those of us who are missing someone today.

But also, remember, that tomorrow, you could find yourself in this group of survivors. Remember that even though you are healthy, there isn't a guarantee that you won't get cancer. Remember that cancer predates many of the things that people say are giving us cancer. And remember that some of the people you know, struggle with the term survivor - and that's okay. And some of the people you know embrace it fully and wholly - and that's okay.

There are over 15.5 million survivors in the US today. The only connecting thread for these 15.5 million people is that somewhere in their life, a doctor told them they had cancer. We are a group of people with a wide range of feelings on the term "survivor." 

As for me, the term doesn't bother me, but I don't feel a kinship with it either. I suppose I'm ambivalent about it really. Today will be a day like any other. I have nothing special planned. I'm recuperating from a virus I've dealt with all week. I'll watch too much tv. I'll knit some. And I'll go outside to enjoy our beautiful weather. 

For me, today is just any other day. 
Other days in my cancer story, I mark or I celebrate. 
But today, today, is just an ordinary Sunday.

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.


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


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.



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.