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).



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



Thursday, April 14, 2016

It just is

Two weekends ago I headed up to Madison, WI and attended the Midwest Young Adult Cancer Conference.

It was a one-day affair and I had a good time.

I learned a few new things, and connected with some great people. For me, connecting with others was the highlight of the day for me and it's highly probable that I'll attend it again next year.

That said, part of the day was hard fro me.

I was surrounded by people who also had cancer. Who were in my age range. Some of them also parents, some of them not. It's good for me to get time with a wide range of people who are in similar boats as me. It's therapeutic for me.

It's why I try to get out to local Stupid Cancer meetings and YSC meetings.

At the end of the month, I'll be flying to Denver to attend CancerCon as well.

There are too many moments of the day where I feel isolated and different.

At my core, I know that I'm not - I'm surrounded by a fair amount of people who try to understand, who are caring, and sympathetic. It means a lot to me. But it's another thing to talk to someone who knows what things are like verses someone who is just trying to imagine what things are like.

I come home feeling more normal, feeling more okay with things, and with a wee bit of energy.

Except sometimes I don't. Sometimes I walk away and I feel stuck.

And I hate it. It's uncomfortable. It's unpleasant. It's hard to face.

So on Saturday, in the midst of all the goodness of the day, this feeling of stuckness was thrown into the mix as well. Frankly, this wasn't the feeling I was anticipating dealing with.

But I sat in it for a bit. Instead of ignoring it, instead of burying it, instead of just wishing it away, I sat in it.

Turns out, it wasn't actually that bad.

I mean, it's probably not great. But it's not really bad either. It just is.

It just is.

Okay, maybe I'm still working on convincing myself of that. But I think it's worth  convincing myself.

So with all these thoughts flying around my head, the rest of the conference went really well.

At the end of the day we did a little wrap-up activity in which we wrote what we had expected to learn there and what we did learn. After all of that, we were challenged to write some sort of wrap-up in a 7 word poem.

7 words.

I admit I was stumped at first, but it came to me.

Short. Sweet. And it hit the point.
At the last minute, I altered it a bit.
I think it's perfect.
This is what I'm holding onto moving forward.

Thursday, April 07, 2016

What comes next?

Chicago at Night
Chicago at night
What comes next?

I've been thinking about this a lot lately.
I've got one daughter two years away from college. One daughter who is a year away from entering high school (and ending homeschooling). One son who is three years away from making the homeschool-to-public-school switch. This means there should be an eventual return to the work force for me. We're renting a house now. We'd like to buy and soon. We'd like to buy this house. I'm not sure it's in the cards for us financially (see: one child 2 years away from college with a sibling to follow every three years thereafter).

In the next several years, there is going to be a lot of change around here. Not that it's all bad. I love watching my children grow. I love seeing where their paths will take them. While I'll miss my daughter should she go away for college, it will be exciting to see how she picks her school, what she picks to major in. There will be lots of milestones to celebrate, holidays to be together for, birthday parties.

Still. I sit here and wonder what next?

And if I'm being completely honest, the truth is that's what I've been asking myself for the last 5 years.

Cancer. Well, what next?

I still don't know. I still haven't figured it out.

Sometimes I think I'm on the verge of figuring out. Something happens, I feel moved, the excitement blows up like a balloon. But always, always, a pin comes a long, pops that balloon, and I'm left there with lots of uncertainty. Lots of anxiety. Lots of worry. And lots of worrying about what the heck I'm supposed to be doing. Because I just don't know.

I'll tell you something else. I'm really, really, I mean really tired of it all. I'm just tired of it.

How has five years passed and it still feels like just yesterday I was told that I had cancer. Because it just doesn't seem to make sense in my mind.  And this whole time I've been wondering what's next.

You know what I think I realized though? It's not anything about what comes next. I've spent the last 5 years looking for the wrong thing.

It's not about what's next. It's about what's now.

This moment.
Right now.

So I'm trying.
I'm really trying.

It's going to take me time. I wish I could rush and just be where I want to be. So I'm going to try to be patient and, as the cliche goes, take it one day at a time.

Sunday, March 27, 2016

And As I Knit ...

And as I knit each stitch for you,

I knit in prayers of happiness and joy
I knit in wishes of a life of lots of laughter
I knit in hopes of goodness and lots of smiles
I knit in hugs and love for the moments you need them, despite hoping you never will
I knit in thoughts that you will have a well-knit community around you.
This is what I knit for you.

As I knit, my anxiety slips off like a stitch being dropped
As I knit, the sadness I carry lightens
As I knit, worries about my health disappear
As I knit, I feel like I've found my place in the world
As I knit, I am filled with joy and happiness as I picture you with the finished product
This is what I knit for me.

I knit for you
I knit for me

As the yarn is joined together, for a moment, so are we
Just for a moment. 

As I knit each stitch for you