Saturday, April 29, 2017

CancerCon Day 1

So. It's just after midnight. I'm sitting in a dark hotel room. One roommate is sleeping, the other is still out.

And here I sit.

Exhausted to the core, and yet still unable to sleep.

Not for the usual reasons though - no anxiety, no one who needs me to take care of them. Just me, sitting here, reliving today and smiling, knowing that being here is so important to me.

Today, the first official day of CancerCon was, well in a word, awesome!

Lots of laughs, lots of hugs, so many good conversations, and at one point, I folded myself into a suitcase (more on that later).

There was a lot of fun and games today. It will, at first glance, look like CancerCon is one big party in which we all come and just hang out and have a good old time.

And we do.

But.
But.

But there is more to it in that.
In the midst of the laughter, there are tears.

We party, but we share our stories. Sometimes these stories make us laugh. Sometimes they make us cry. Sometimes the stories are currently in a good spot. Sometimes these stories do not come with a happily-ever-after-ending.

We party, but we bond. We bond with people who have had cancer. We bond with those going through treatment. We bond with people who have rare cancers. We bond with people wh have our cancer. We bond with people who take care of people with cancer. We bond with mothers. We bond with fathers. We bond with daughters. We bond with sons. We bond with husbands and wives. We bond with doctors. We bond with advocates. We bond with representatives of companies.
Sometime we bond over shared music tastes, or we find another Doctor Who fan who wants to play Pokemon Go too. We bond with someone else who pulls out some knitting. We bond with someone else who is here for the first time. We bond with people who have been to almost every Stupid Cancer conference ever.
Yes, we bond a lot.

Because there's something here so many are lacking back at home: people like us. People who had cancer but don't look like a "typical" cancer talent (whatever that is supposed to mean). We are surrounded by people who don't say "But you can't get that cancer when you're young!" Because we're all young, or we were young, or we take care of someone is young. We have freedom to say things like "fuck cancer," or "cancer brought me some good things," or even "cancer was a gift to me." We toss around names of chemo, of drugs, of number of radiations treatments. We exchange stories about doctors who suck, doctors who go above and beyond, or about that one time we puked on the cute doctor!

Some of us are bald, some have short hair, some have medium hair, some have long hair. Some of us miss our normal hair and can't wait for it to grow back and some of us have discovered that damn, we look good with short hair!

We talk about pain management, of things that hurt, of things that don't hurt anymore. We mention we are going to take a break to get a nap in and no one says things like "geese, must be nice to nap" because we all know that no one wants to actually take a nap and miss what might happen because it's fun here, but our bodies are crying for rest.


We talk about anxiety and how we are scared the cancer will come back even though it's been a year, or two, or five, or nine, or eleven.

We talk about how our cancer is progressing even with treatment and we hope that we will still be around in a year, or two, or five, or nine, or eleven.

We talk about how lemons don't cure cancer. And if they did they'd cost a lot more money and probably not sold at a supermarket.

We talk about the people who took care of us. Or the people we took care of.

We talk.
And talk.
And talk.

And we listen.
And listen.
And listen.

And from the Instagram posts or from the outside looking in, it looks like a big party. But it's so much more. It's knowing you are not alone. It's knowing you aren't the only person struggling with the issues facing you. It's not being the youngest person in the room by 20 or more years.

It's about community.
And family.
And not being alone.
And yes, sometimes it's about partying and having a good time. Which means sometimes we been ourselves into a suitcase to get the points for the scavenger hunt for our team. And it's about handing someone a tissue as their eyes fill with tears.

Because we know.
Because we get it.
Because we are linked in ways we never asked to be linked, but now that we are, we can become friends and form relationships.

And that is a wondering thing.

Just think. This is only day 1! Wonder what day 2 will hold!

Wednesday, April 12, 2017

Phoning it in

The last few weeks have been a bit on the rough side around here.

[side note: In what we'll call fair disclosure, there have also been some really fun and great moments as we have a French foreign exchange student, which maybe I'll blog about later!]

Anyway, there have been some not fun side effects. Higher levels of stress. And some bad news from friends and loved ones.

Boo. Hiss. Cry. Be sad.

So tonight, I'll ordered dinner. We rarely order dinner, except for pizza nights. Like, not counting pizza, I can't remember the last time I ordered dinner. But I just could. not. make. dinner. tonight.

And then I flashed to my grandmother's funeral late last summer.

My grandma was 98 years old when she passed away. She passed away in the bedroom she was born in. In the house on the farm her parents started. Eventually her and my grandfather took over.

At the funeral people were sharing memories. One of the memories shared was going to her house to wash jeans, which took a long time.

Grandma had 9 children. And a husband. On a farm.

Something really resonated with me that day, that I thought of today.

Grandma couldn't take a day off. She couldn't just decide to not make dinner. Or to wash all the jeans. Or other laundry. Or cooking food. Or all the things she had to do.

And I think about today. Where I have an electric stove, a microwave, a dishwasher, a washing machine, a dryer, a car, tons of grocery stores, only three kids, etc, etc.

Which makes me think, damn, grandma was a strong woman.
Which makes me thing, damn, I'm lazy.

Though I don't think I'm lazy.

But I wonder, did grandma ever wish she could make someone else make dinner. Did she ever call a friend or relative and say hey, today's been rough, can you help me feed all these people. Or did she serve leftovers once or twice not because it was all she had but because she didn't want to cook more food. And if she had, could she have admitted it?

What pressures were on her as a mother as the ebb and flow of life rushed on around her?

I never asked her.
I never even thought to ask her.

I wish I had, honestly.

I suppose this is a case of you didn't know what you wanted until it was gone.
Or I took for granted that she could have taken a break, or not made dinner, or skipped laundry one week.

I'll assume that when my grandma was in the throes of motherhood and had some bad days, heard bad news, got sick, that she didn't take a break. That she had to buck up and make dinner anyway.

That said, I'm glad I could literally phone in dinner tonight. And I won't take for granted the ability to do that.