Why do bad things happen?

(I originally posted this on my personal facebook page on June 22. In the midst of grief. Again. I had just lost another friend not too long before this. And it hurts, it just hurts so darn much. And so I just poured this out and I'm still not sure it's eloquent enough or pretty enough, but I think it's human enough and real enough that I'm sharing it here as well).

This morning a friend asked a question that was basically why do bad things happen and bad things happen to good people and why do we still look for the good in the bad. And I wanted to reply in a way that wasn't cliche or trite but was honest and real. So I thought and when I went back to share with her, I saw that she had passed away. Cancer has stolen another friend, another good person, another loving heart.

And I don't know why this happens. But I know that it just hurts so much.
And I know what I would tell Christina if she were still here. I would tell her (and what I'll tell myself right now. And what I would tell so many of you because I know others are struggling with grief and illness and pain):

Our world is imperfect and unfair. It can be so incredibly unfair that it just takes our breath away. The unfairness can make us angry and upset and want to lash out. But our world is also a world of ands.

So our world can also be beautiful and perfect and lovely. And we can find here people who are just amazing human beings down to their very core. People who are full of goodness and light.

And because we live in an unfair world that can also be beautiful, sometimes really shitty things can happen to really lovely people. And there really isn't a why.

Sometimes you can be strong and amazing and giving and loving and be in pain and have struggles and carry a burden that just feels overwhelming at best.

It's awful. But it's our and world. And you, well you handle it beautifully. And it's okay to be mad and upset and acknowledge the unfairness of it all and to some how weather the storm with a grace that really is beautiful.

I don't know the why. I don't know the how. But I know the who; I know you. And I love you and wish I could help ease your burden. Love you so very much.

Go hug someone. Go tell someone you love them. Life really is too short, even though some days it is too short and too long.

Failing

As I sit here and look around, all I can see is failure.
Every thing I think about, brings me back to failure.

I am failing.
Every. Single. Day.

Laundry done? Nope.
House cleaned? Nope.
Phone calls needed to be made? Nope.
Long term goals? Nope. Nope. And, oh yeah, nope.
That think I was supposed to remember? Forgotten about.

I am awash with failure.

I know, I know.
We all fall down.
We all make mistakes.

We just have to try again. And again. And again.
And this famous person had to do something 1 quadrillion times before they were successful!

Well, fanfuckingtabulous for them.

I am not them.
And here I stand.
Or well, sit.
Or well, lay down.

What I am good at these days?
Pain.
Being exhausted.
Pain.
Forgetting things.
Being exhausted.
Pain.
Feeling behind.
Feeling tired.
Pain.

And did I mention that I'm tired and in pain?

Because here's the thing.
I am trying so hard.
But it's so hard to try when things hurt and you're exhausted.

And there is SO much I want to do.
Things I want to help out with.
Things I want to do better with.

I swear I am trying.
I am trying so hard.
I make lists.
I forget to look at lists.
I make new lists.
I put them where I have to look.
I forget where I put them.
Then the kids need me.
Or my hands have decided to stop working.

For the record: It's really freaking hard to do things when your hands don't want to work.
Some of you are all too painfully aware of this.
Some of you have no idea what it's like to not be able to close your hands.
Want to hold a coffee cup? Not by the handle you won't!
Want to hold a pen? Ha! Good luck!
Want to knit? Nice try, but not today.

Hey, want to change the world?
Why not try getting out of bed first!

Want to bake the family a cake?
Stretch those legs out first.

Want to sit and type a blog post?
Wait for your hands to warm up.

Because I have a million things I want to do.
I have a million projects I want to accomplish around the house.
I have a million blog posts bouncing around in my head.
I want to be a better mom.
I want to not be behind on laundry.
I want to go back to the hardships I had six years ago and have those be my hardships today.
And I want the fucking hot flashes to go. far. far. far. away.

Okay. I turned a fan on and am feeling less hot flashy.
Though I still feel quite ranty.

I tried to reverse it.
You know, instead of a to-do list, I tries to make a things I accomplished list.

It sort of looked like this:
Get up.
Get granny breakfast.
Lay back down.
Listen to a podcast.
Drive kids.
Take a nap.
Wake up.
Ask kids if they ate lunch even though it was two hours ago.
Feel relieved they were smart enough to eat lunch.
Think about housework.
Take a nap.
Eat dinner.
Watch TV
Put granny to bed.
Put self to bed.

I mean, I don't mean to brag, but yes I did all of that. In one day.
But you don't even know how much effort it takes to think about doing housework.
On a good day I do some. But then I have to pick: will I vacuum or will I do laundry?
And place bets on whether or not the laundry gets folded the same day it's washed. (you'll win more money if you bet no).

Alright.
There might be a bit of hyperbole here to make a point.
But not much honestly.

To top it off I am surrounded by amazing, accomplished, literally changing the world people.
I am so excited for them.
I celebrate with them.
I know there are lots of hard moments they have to work through.
I know that often times on facebook we get the whitewashed version of life.

But, honestly? I am so jealous.
I am so jealous of all that these people are accomplishing.
I am so jealous of the fancy vacations.
I am so jealous of the big houses.
I am so jealous of the new cars.
I am so jealous of the sweet new babies.
I am so jealous of friends who have nights out every single week.

(But, I want to clarify, I know these things are earned and deserved and I do not wish for people to not have these things. I just wish I had them too).

And I sit here and I'm off to the doctor to get another test because the last one found something that might be bad.
And I'm off to another funeral because another friend is gone.
And I'm bringing another friend food after surgery.
And I'm sending another friend some goodies in the mail as new cancer treatments are started.

I realize that as hard as it is to admit, I both love and loathe my cancer community.

I love all the wonderful people in it.
I love all the friends I've made.
I love it when people can say "me too!"
I love it when I feel not alone.

I loathe I am a part of it at all.
I loathe more illness and bad news.
I loathe death and grief and mourning.
I loathe treatments and side effects. 
I loathe feeling like a failure in so many ways.

Cue sigh of frustration.
And sigh of relief.

That was a lot to get off my chest.
Sometimes venting feels so good, doesn't it?
Nothing will change in the next five minutes, except I might feel lighter for a little bit.
Which is good.
Because venting? Definitely not something I'm failing at!

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!

Oh 2016

A poem I wrote in April

It's the start of the new year.
A time to reflect on what's coming and what has passed.

I won't lie.
2016 was not the greatest year of my life. In fact, it is probably in the top 3 of worst years ever.

It wasn't all bad. The year started well. Winter and spring were good.
There was time with my family. There was CancerCon. There were good days for sure.

But spring turned into summer. And everything seemed to fall apart.

I think my 5 year anniversary of diagnosis might have set it off. Or maybe just life in general. Or maybe a medicine I take. Or maybe nothing. Maybe it was meant to be.

But quickly, before I could realize what was going on, things seemed to spiral down, down, down, and when I thought it couldn't go any lower, it did.

I knew I was in a bad place. I tried to fight it - I did. But I reached the point where I didn't want to get out of bed in the morning. I thought how much easier it would be to just lay in bed and not get up. That was all. I just wanted to stay in bed. I didn't want to parent. I didn't want to cook. I didn't want to clean. I didn't want to read. I didn't want to knit. I didn't want to watch tv or stream anything. I didn't want to shower. I didn't want to do anything, but stay in bed.

Thankfully, each morning I was able to talk myself into getting up and doing the absolute minimum of things I needed to do.

I was also at this time having issues with medicine that caused a lot of pain. I was getting migraines. My iron dropped again.

So I would get up, do what needed to be done, and then nap.

I was truly exhausted. I was truly in pain. I was truly burned out.

I also realized that I was truly depressed.

Pain, depression, disease, anxiety - there's a circle there can feed on itself once it's started that can be very hard to stop.

There was also grief and guilt and feelings of inadequacy. I felt this surge of anger.  I was mad. At everyone. At everything.

But mostly myself and mostly cancer. Everything cancer took from me, every side effect cancer gave me, everything I couldn't do, every time my body hurt, every time I had to say no I can't do that. There was anger. And anger. And even more anger.

That's when I knew this couldn't be fixed by me alone or fixed with sheer will.
So I went to a therapist.
And I went to a doctor.
And I talked.
And I started medicine.
And I was diagnosed with PTSD that includes depression and anxiety. 

Is it all helping?
Yes. It is.
But.
There's a lot to unpack.
It doesn't get fixed overnight.

And there's still the medical side of things: pain, low iron, fatigue, stomach issues, migraines.

Basically, I mostly feel like I'm a hot mess.

I haven't talked about it much. I haven't talked about it with many people.
Honestly, I feel like a failure. I feel like I don't have a right to have PTSD. I feel afraid that if I share, people will treat me differently. I worry people will think I can't be a good mother through this. I feel ashamed.

Of course, now it's a new year! And it's time for a new beginning!
Or not.
This doesn't end because the calendar changed.
I don't suddenly cast out all my demons because it's a new day.

I'll keep doing what I'm doing though.
Except, I won't hide it as much.
I'll try to wash the shame away.
I'll try to remember that life is hard and beautiful and complicated and wonderful and awful and bittersweet and full of moments that take your breath away from awe and sometimes from pain.
I'll try to remember compassion - for myself and for others.
I'll try to remember love - for myself and for others.
And I'll try to remember patience - for myself and others.

I'm not sure what 2017 will hold in store for me.
I'm not sure where I'll be standing 12 months from now. 
I feel pretty confident though that I'll be doing my best to do whatever it is I'm doing then.
That I'll still be working through this huge bag of emotions. That I'll be trying my best to be as healthy as I can. And that where I am in life is where I am, and that I'll still be learning to not focus on where I think I should be.

#100DaysOfGetBusyLiving

So, 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. 

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.

My Favorite Word

Today, I got to hear my favorite word. There is (thankfully) rarely an occasion to use it, so I don't hear it much, but when I do, it is sweet, sweet music to my ears.

The word isn't love.
It isn't money.
It isn't chocolate.
It isn't cake.
It isn't surprise.
It isn't winner.
It isn't clothes. Or cars.

It isn't anything you can give me. Or buy me.

The word I heard today was simply "benign."

I also heard non-malignant, which is practically the same thing, but I think benign is more fun to say. Also it makes me think of Bingo. B9.

Benign.

I got to hear that word today.

Which was a relief. Because for the last few weeks, I had walked around in a panic; thinking, worrying, fretting, terrified that I would instead hear Sorry to have to tell you, but you have cancer. Again.

All over a freaking enlarged lymph node by my clavicle. My left supraclavicular lymph node if you want to be exact. It was enlarged. For no reason we could discern. I found it accidentally about a month ago. Then the doctor felt it. Then they ultrasounded it. Then they biopsied it. Apparently, we don't mess around with supraclavicular lymph nodes.

All I could think was here we go again.

Again. This is the fourth time I have been biopsied. Going into this biopsy, I was 1 for 3 with cancer. I didn't know if I'd come out the other side 2 for 4 or 1 for 4.


And I'm just so over all of this.

But it's not all over me.

I spent the last few weeks imagining that everything will come back fine. I imagined that cancer had returned. I hoped that it hadn't. I pictured telling my kids that it has. I pictured laughing with my husband about how nervous I was and how all that worry was for naught. I wondered what words I would use to tell my mom that I have cancer again. My dad. My sisters. My family. My friends. I wondered if even if the results were good, if I'd still have a worry, an ever-present fear, at the back of my brain. Wondering if cancer was back.

The weight is ever present. It is so heavy on me.

I wonder will it always feel this heavy. Will the worry always be this deep. Will the fear always permeate everything I do. It must get better.

When we checked my thyroid, I called support people crying before the biopsy. I was so scared. This time, I haven't said a word to hardly anyone really.

So it must be better? It must not be so scary or painful. It must be getting better.

Time eases all we're told. Albeit slowly, at a snail's pace. So slowly that if you were a bystander you might not notice the changes at all. But over time, a subtle difference would start to emerge. And if you pulled out a photo from 20 years ago and held it up, you might think well look at that! I can see a difference.

And that is what I'm holding onto tonight. No matter what happens, it will be okay. It's got to be okay. Even if it's not. It's got to be.

How to help

Last week, on my facebook page, I shared a list of ways to help those going through chemo/cancer treatment. The list was pretty popular and was shared more often than anything I've posted. Someone suggested I post it over here so that more people can read it, so here it is.

This is the list of things that I think are ways to help those going through a hard time. Some of these things people did for me. Some of them others shared were done for them. And some are just things that I think would have been nice if someone had done.

This list, is of course, not all encompassing. Reading some of these might give you other ideas to help. Follow your gut. You know your friend/family member best so do what feels right for you to do for them. But if you need a place to start, I think this is a good jumping point. 

• Set up an account at takethemameal.com and share with those who can help bring dinners
• Set up an account at lotsahelpinghands.com to set up things like dinner/housekeeping/helping with kids/driving/etc
• Buy a cooler for the family to put by their front door so when people bring meals they can put it in there and not have to ring the doorbell if people are resting inside
• Next time you are shopping, buy an extra toilet paper pack/paper towel pack/laundry detergent/dish soap/etc ... the things that we all use every day but don't necessarily buy every day so that they are stocked up and it's one less thing to worry about
• Buy groceries you know they will like and deliver to the house
• Send your friend books/magazines/word search/cross word books/etc - some chemo infusions can take 8 hours. That's a lot of time to sit at the infusion center and lots of time to pass
• Buy your friend something that is their hobby (i.e. for me, buy yarn ;-)) Yarn, art supplies, a cross stitch kit, a build your own model kit, or a coloring book or whatever makes them happy
• Chemo can dry you out. Bring your friend chap stick, lotion, biotene mouthwash, etc. BUT make it UNSCENTED. Chemo also heightens our sense of smell and scented things probably aren't going to go over well for a lot of people. Same thing applies to lotion/body wash/candles/etc
• Give a lap blanket to take to chemo or use when watching tv
• Buy them some shoes that are easy on and off. Sometimes chemo makes your feet swell or gives you neuropathy in your feet. Easy on/off comfy shoes are a big deal. 
• Scarves, hats - both knit hats for colder days and lighter hats for warmer days. 
• Help your friend go pick out a wig. Or be with them when they shave their head. Or offer to shave their head. Do not tell them it's only hair and it grows back. It is, but it doesn't help to hear that sometimes.
• offer to take their kids with you (if you can) when you take your kids out. 
• offer a night out to the caregiver - you come over, bring a movie or tv series and allow the caregiver to get out.
• If the person going through cancer is married and has kids, take the kids one night and bring over some fancy(ish) food for the couple to enjoy. Date nights tend to not be a priority during all of this, so give them a taste of it if you can
• Offer to take your friend to a movie, out to eat, to the mall to window shop, a walk in the park, a drive to your favorite cafe, etc. BUT remember to be flexible. If your friend cancels because they aren't feeling well, it's not YOU, do not take it personally. Even if they cancel ten times in a room (though if that happens, think about if you're offering to take them to somewhere YOU want to go, or somewhere s/he would like)
• Be prepared to say nothing. Sometimes silence is golden. Sometimes we just need someone to listen, to nod, to let it all out. You don't need to have an answer or a way to fix it. Just listen.
• Come over and clean. Don't ask. Most people won't say they need it, but do it anyway. 
• Send little notes in the mail every so often. Your friend is probably getting a lot of bills in the mail. Something that is not a bill, would be lovely. 
• Have a favorite song you think your friend should listen to? Or a book? Or a movie? Buy it for them. I think itunes let's you buy specific things and gift to people. Amazon might as well. Share. 
• During chemo, a person's immune system can be compromised and a trip out just isn't in the cards - get creative. A friend knew there was a movie I REALLY wanted to see, so she took me to the drive-in. I got to see the movie and avoid germs. And get a night out of the house. Win-win-win. 
• Support their treatment choices EVEN if it's not what *you* would do. On the same vein, do not send them every "cure" you read about on-line. Do not tell them about your cousin's-friend's-sister's-uncle's-wife had the same cancer as them and died an awful terrible death that just tore apart the whole family. 
• Do not tell kids (if they involved) that they have to step up and be the man/woman of the house. Those kids have enough weight on their shoulders. Just love them and treat them as you would treat other kids their age.
• If you want to give gifts, and the health is good enough, don't just give toys/things, also give gifts of experiences - passes to the zoo, movie tickets, etc. Time is precious and while more toys and more toys are fun, sometimes the family also need time to just do something fun. A night of minigolf can be priceless.
• It is better to offer to do something than ask what you can do. We might not be able to think of a specific thing to tell you, but if you offer, we'll say yes please. We might still say no, do it anyway. Asking for help is hard. Accepting help is hard. But come over and wash dishes anyway. 
• Give a journal so they can write things down (if that's something your friend would like).
• Offer to help spread news among other friends/family/etc. Whether that's making phone calls or setting up an e-mail list, often times there are many people who want updates and it's hard for one person/family to be able to talk to everyone and let them know what's going on.
• Offer to go to doctor's appointments and take notes. Lots of information can be thrown at people in a short amount of time. Go and just be the note-taker. Before the appointment, ask them if there are any questions they want to ask and also ask those questions at the appointment as well. It's easy to forget in the appointment what you wanted to ask.
• Chemobrain is real. Your friend might seem "flaky" Be understanding and patient. Again, it's not personal. 
• Help the person write thank you cards to others who have helped as well. 
• Give them movies/tv shows/etc to watch during the days when they need to rest or need treatment or whatever. 
• Audio books are a good idea as well. Sometimes chemobrain can make reading a book hard, audio books can be easier for some people
• If you have the talent, offer to shoot family pictures (or individual pictures) or get a photographer in. Many people have found comfort in getting those photos done.
• If you can gift a few months of netflix, hulu, amazon prime, hbo go, etc, then do so. There might be days where doing things is hard, or long days at the doctor's office. Having something to just watch and relax to, can be a good thing. 
• If you have the strength, and your friend is suffering from joint/bone/etc pain (which can happen in a lot of treatments) that make them wheelchair bound (temporarily or long term), come over and push them around the block. Get them outside. It can make a big difference in a person's mood to just get outside for a bit.

 There are lots and lots of ways to help. Just start wherever you can start. In a way that you think is needed for your friend.

Losing my voice, but not my voice

totally not kidding about the white board!

Last week I got hit with a nasty bug. It's been working it's way through our house, and as usual, I got hit the hardest.

This resulted in ,probably to the happiness of my children, me losing my voice.

I talked funny for a day, then could hardly talk for a day. Then was under doctor's orders to STOP TALKING AT ALL.

For real.

I texted people, who were standing right next to me. I walked around with a white board and wrote things down.

It was lovely. And by lovely, I mean, not lovely at all. It was annoying. It was frustrating. It was a pain in the rear. I mostly kept things to myself because it was too much work to relay information to others. Not to mention I was tired and exhausted and kind of just wanted to sleep.

But, I realized, that even though I lost my voice, I didn't lose my voice. I can blog here. I can blog at CureDiva. I can go to facebook. I can go to twitter. I can share photographs on instagram. I have a voice. But not only that, I have a voice that some people listen to, read, and tell me later it meant something to them.

That is an amazing gift.

I can't tell you how grateful I feel when people tell me that something I've written has impacted them, or made them think, or made them look at something just a bit differently than they did before.

One time, someone walked up to me and said "Brandie? Are you Brandie? From the blog 1000 stitches?" I walked on air for a few days after that. I enjoyed it - I doubt it will happen again and I treasure it (though I'd treasure it even if I thought it would happen again).

There is something wonderful about having a voice. Having a space to say what I need to say. Having the feeling that I am being heard.

Someday, I will tell you about the flip-side of this: of how sometimes knowing people are listening, reading, hearing, leaves me feeling paralyzed to write more.

But today, today, I'm very glad that I have a voice. And that my voice is heard.

How Did I Do It

Unfortunately, I learned recently a friend was diagnosed with cancer.

Instantly, I sent love and prayers. And I reached out. Call me anytime I implored. No, really, I said, anytime. Even if you don't think you should, call.

And he did.

And we talked.

I don't know if I helped. Or if I talked too much. Or if I said the right things. Because sometimes when your head is buzzing and you just feel so helpless to help people you care about, sometimes words come out wrong. Or we don't manage to get all the words out. But I did the best I could. And I tried to say the things I would want to hear in those first few days of diagnosis.

And at one point he asked me, "How did you do this? How did you get through it?"

And I had to bite my lip and hold back the tears.

Because, I don't think I got through it very well. And I don't think I'm getting through it today much better.

I did get through it, sometimes minutes at a time. I got through it because I'm here today. And even the darkest of the darkest days ended.

But, there's still a part of me back there. There's a still a part of me, like a tantruming three year old, stomping my feet, shouting, kicking and screaming, I DON'T WANT TO DO THIS! IT'S NOT FAIR!

Sometimes things are fine. There is smooth sailing. I have a smile on my face. I feel good. Things are good. Cancer sometimes feels like it happened in another life, to another person, or in a dream, or just a weird out-of-body experience.

Other days, not so much. It feels like it was all yesterday. The lingering side effects make me feel broken. I am angry. I feel jaded. There is a chip on my shoulder the size of the sun.

It's not the pretty truth, but it's the truth.

I take those moments as they come. I do my best to roll with them. I dive head-first into projects to distract myself. I focus on the kids. I clean the house a bit more than normal. I avoid blogging (ahem, like I have pretty much this entire July). And when I ready, I sit with those feelings and I try to just let myself feel them as I need to.

But how can I explain all of this to him? I can barely explain it all to myself. I can barely find the words to type here to explain it.

I know, inevitably, someone will read this, think I'm huddling in the corning crying and never getting up and that person (with the best of intentions) will start to worry. It's okay, you don't have to worry. Because that's not what's going on.

Yes, I'm sad.
Yes, I'm angry.
Yes, I'm tired.
Yes, I'm jaded.
Yes, I wish things could be different.

That is all true.

But I also get up each day and do the best that I can on that day.

It's what people do. We get up, we put one foot in front of the other.

Sometimes, I have to take a break and go cry.
Sometimes, I vent about it all to those who will listen.
Sometimes, I go into a dark room and sit there for a few moments.
Sometimes, I think I don't have the energy to do what needs to be done, so I cull to-do lists, I take naps, I lean on friends and family.

And time ticks away. Another day passes. Another day begins. In between it all there is hope; hope for better days; hope that I learn to understand what happened better; hope that I can accept it more than I do today; hope that there will be many, many, many days left to continue this path I'm on; hope that the learning curve becomes less steep with passing time. 

But that feels too big, too small, too cliche, too dark and yet too sugary-sweet all at the same time.

So I tell him, hey, some days will be hard. It's okay. Cry if you have. Be angry if you have to. Let it out. Then just take it a moment at a time. 

It doesn't seem like enough to say. It doesn't seem to adequately fill the space of what is being asked. And yet, there it is. Some days suck. But not all of them. Some days are hard. But not all of them. Some days are great. But not all of them.

Each day ends. Which is great, because it means we get a new one tomorrow. Tomorrow might be hard too. And the next tomorrow might be hard too. And the next tomorrow. But life has taught me they can't all be hard. The glimmer of hope in my eye tells me that fewer days will be hard than not hard. And I cling to that.

I cling to it even today. Even 4 years later. Even through the anger and the pain and the weight of it all.

I cling to it on the days where I feel like I blindly muddling through the day. And on the days when it is smooth sailing. And the days that are somewhere in between the two.

I cling to it even in those moments where it feels like I'm drowning in everything going on, in the middle of the storm, and I can't see that rope I'm clinging to, but I know it's there. And I hold on with all my might.

This is how I did it. This is how I do it. I'm not saying it's the right way to do it. I'm not saying it's the wrong way to do it. But it's how I do it. It works for me. I don't know if his path will look the same as mine. I assume not, but it might look similar.

So I told him that some days will be hard - not in effort to scare or frighten, but behind those words is this thought: some days will be hard and that's okay. You can admit it. You can even embrace it if you need to. You don't need my permission to acknowledge the rocky parts that come along, but I give you permission anyway, because sometimes it's hard to feel the bad parts. Sometimes we think we should smile all the time. Sometimes we think we must be brave all the time. Sometimes we will feel like if we admit it's hard, it's like giving up. But we don't need to smile. We don't need to be brave. We don't need to pretend it's all easy and that we aren't scared or worried or angry. Some days will be hard. And it's okay.

I don't know if that will help him. I do know I wish someone had said that to me 4 years ago. So I said it to him. And if asked by someone else, I say it to them too.

And in the meantime, I will continue to cling to my hope, to take life a moment at a time, and to do the best that I can each day.

CureDiva

For the past few weeks, I've been sharing a post or two over at the CureDiva blog.

It's been an honor to have posts over there, and so far, I had been sharing old posts from this blog over there ... rerunning them if you will, for an audience primarily focused on breast cancer.

Today, however, I have two posts that I wrote specifically for CureDiva.

One is a letter to my body. I hope I can listen to my own advice. The last week around here has been a struggle with migraines, stomach issues, and chronic fatigue. I'm tired. And I need some rest.

The second, is a follow-up to what I shared here last summer about getting some more DNA testing to see if there was a genetic component to my cancer. I got the results on time, but wasn't ready to share them. Now I am.

Hope you'll hop on over to read my posts, as well as what the other fabulous writers are sharing!

xoxo,
Brandie

The Side Effect I Wasn't Warned About

When I learned I had cancer, there was a lot of information thrown at me. As we learned more about my cancer and decided on a treatment path, it was time to go over all the side effects, the what-to-expects.

The first hurdle was surgery. I was told possible complications, I was told about healing time, and expected hospital stay. I even asked my surgeon how long until I could knit again (she is a knitter and she completely understood my question!).

From there, it was chemo time. The chemo side effects were so serious that for the three chemo drugs I took, not only did I get a list of side effects and what to expect, I had to sign a paper saying I was told the side effects, the possible complications, etc and that I was comfortable receiving said drugs.

Next up, radiation. Again, a list of side effects. A list of what to expect. A nurse going over all of it with me. How to care for the radiated skin, things to watch for, things that were normal, things that I should call if happened.

Side effects on top of side effects on top of side effects. Some minor, some major, some barely noticeable by me, others impairing my quality of life.

Except, there was one side effect no one warned me about. No one prepped me for. I never expected it in a million years.

A side effect of having cancer is making friends with people who have cancer and having to grieve for the friends who die.

While friendship is a good side effect, and one I never expected, grief is the worst side effect I've faced so far.

As I see some pretty wonderful people die from cancer, my heart shatters all over again. And I rebuild it the best I can.

When I was first diagnosed, I was very active in breast cancer groups on-line. I tried a couple support groups. One wasn't a good fit me, but another one was. It was good. And then a friend passed away. And another passed away. And another. And another. And another. Jenny, Susan, Rachel, Jada, Barb, Dave ... all friends who died from cancer.

It was too much. It was just too much for me.

I realize this is quite selfish on my part. Sometimes I have to be selfish though.

And so I pulled away. I pulled away from chats I had participated in. I pulled away from some friends. I pulled back and tried to bury my head in the sand. To pretend that I wouldn't lose anyone else to cancer.

If only. If only it were that simple.

In the last few weeks, several more people have died. My heart has shattered a few more times. Another friend received bad news: treatment not working, time for the next one. I have cried and been angry. I have shouted. I have whined that life is not f*#king fair. I have woken up, and done what needs to be done, all the while wanting to crawl into bed and just hide away for a while.

Even when I try to build walls, to protect myself, life ticks on. It keeps going. Friendships still get made. Good moments are celebrated. And sad moments still happen.

I wasn't told about this. I wasn't warned.

I'm not sure someone can be warned though.

This is life: it is comprised of birth and death and the time in between. Some get a lot of time in between and some people are robbed of time.

And I can't try to hide my heart away. I can't try to protect it. My life is richer and better because of the friendships I have. I've learned things from them. I carry some of their words in my heart. They have helped me on bad days and celebrated with me on the good. I hope I was able to do the same for them.

It doesn't make my life better to pull away, to hide, to try to protect myself. I would much rather have wonderful friends in my life. Yes, it is hard to say good-bye to them when the time comes. Yes, my heart is heavy with loss. Yes, I will cry and be angry and sad and upset and pissed off.

But I can't hide away and pretend like nothing bad will happen. Because it does happen. And I can't let fear hold me back.

As Helen Keller said, I would rather walk with a friend in the dark, than alone in the light.

Well, not *everything*

More than once I've heard from people that I share everything on-line.

The truth is, while I do share a fair amount, I don't share everything. In fact, there is a lot that I don't share.

Obviously, I can't tell you about all the things I don't share, otherwise, I'd be sharing them (yeah, I know how that works!)

Sometimes it's easy to know what I'm okay with sharing and not sharing (topic a: never, topic b: always) but other times it's hard to know where that line is. The line may change on a daily basis and sometimes the line is fuzzy. This can make it tricky.

There are certain topics that are absolutely, with-out-a-doubt off-limits for this blog. These are things that I wouldn't share with you even if we were face-to-face. Yes, I've got my secrets and I've got skeletons in the closet. These are often topics that even I'm not comfortable with. Things I'm still trying to figure out, or process, or deal with (or avoid dealing with as the case may be). These are things that I don't think could add to what I've already built on this website.

Could that change someday? I suppose so. It's highly unlikely.

I also don't share stories about my family and friends without their permission. I don't tell the stories I feel that belong to my husband or children without asking them first. And if they say no? I respect that. I'm sure you may have noticed that I often talk about my 12 year old around these parts ... it's because she always says "Yes! You can blog that." The other children will almost always say "no, please don't share that." and so I don't. Same with my husband. To me, it's a level or respect. I wouldn't want them putting stories I am uncomfortable with on-line either.

I will share generalities if I think I can offer a learning moment, or the moment affected me (positively or negatively). And I will talk about encounters with near strangers (like, when I was bald from chemo and people stared - I wrote about that but didn't single anyone out). I have written about words spoken that were hurtful, or hard to hear, or I wish would be re-framed, if I think it can help someone, but I would never say who said it. You'll never see me say on here "Well one day my Aunt Sally said the most awful thing to me ever!" (no, I don't really have an Aunt Sally) because a) it is not my intent on this blog to shame people or b) parent others. If I share it's because I want people to see things through my eyes, how some words can make me feel.

I do talk about my cancer a lot. I try to throw in some things about parenting with cancer as well in a way that my children are comfortable with. When I was diagnosed there wasn't much out there to help guide me on how to help my children through this, or how to juggle it all. I hope that the couple of posts I've written might someday help someone else out when they are looking for help or advice or ideas.

I try to not rant on this blog. Sometimes I do though.

I try to add a good mix of heavy with light-hearted content. This blog did start, after all, as mostly a craft blog. And I don't want to lose that side of me. It's not my intent to be a cancer blog - not because there is anything wrong with that - it's just not where I want to be personally. I read many of them. There are so many talented bloggers out there whose blogs are amazing and have great content and are cancer blogs. It is just not my preferred niche.

In fact, I don't really think I have a niche. While it started out as a niche for sharing my knitting, this blog has grown and stretched and changed as I have needed it to. I write about parenting, cancer, knitting, sewing, what I've read, the weather, things I watch on tv, places I've visited, etc, etc. I love having the ability to come here and blog about whatever is on my mind.

And at the end of the day, that's what I need this blog to be: a place for me. If I can't be comfortable here, then there is no point in continuing on. Somethings I will hold near and dear to my heart always, some I will always be willing to share, some things depend on how the others around me are feeling, and what is okay and good to share one day, might give me anxiety to share the next.

So even though it sometimes feels like I'm sharing EVERYTHING here, I'm actually not. I'm sharing exactly what I'm comfortable with. It might be more than other people would want to share and it might be less than what some others are comfortable with. But it is right for me!


P.S. As a side note: Have you ever thought about starting a blog but aren't sure? Rebecca J. Hogue, PhD(ABD) (who I met on twitter) is starting a class called Should I Blog. The first one is starting this month. It's aimed about blogging about your cancer experience, and I think it will be a good class. One of the class topics inspired this post, and I'm looking forward to seeing how the class goes! You should join if you're wondering if blogging is the right move for you!

Things I Wish I Didn't Have To Say

Miss 12 and myself

Sometimes I have to have conversations with my children that I wish I didn't have to.

We've talked about sex, puberty, drinking, drugs, violence, injustice in the world, bullying, stranger danger, what's appropriate/inappropriate to post on-line, etc, etc.

There's a part of me that just wants to shield them from all the bad in the world. To pretend that nothing bad ever happens to anyone ever.

Of course, we all know that it doesn't work that way. And so we talk about all sorts of things. I don't shield them from things - but will present topics at what I feel are appropriate levels for them.

Last week though, I had one of the hardest talks I've ever had to have.

My 12 year old started crying and told me she didn't know what she would do if I died.

....
....
....

I didn't know what to say.

I'm sure she's thought about it before. I've thought about it before. But we have never talked about it before.

And pardon my language, but fuck. I never want to have to talk to my kids, until they are much much older, about how they will handle my death.

I suppose, no matter what I think now, I'll never be ready to talk about it. I don't want to think about losing my mother, and I'm 35.

But there she was, looking at me, tears in her eyes, asking me what she will do if I die.

And so I had to swallow that huge lump in my throat and talk to her about it. Openly and honestly.

I don't know if I said the right things. But I spoke from my heart, and I have to hope that that is enough.

I told her that if I were to pass away, it would be awful. That she would be very sad and it would probably be a difficult time in her life.

We talked about how she would have a lot of people rally around her (and my husband and the other kids). That a lot of people would be there to support her and love her. And I told her to not push these people away, because sometimes grief makes you want to do that.

I told her that I imagined that it would be hard to feel happy. Or that sometimes when we lose a loved one and something good happens, we feel guilty for being happy. That sometimes we think that doing something fun is the wrong thing to do, or that we shouldn't laugh.

And so I told her that I wanted nothing but happiness for her, and that being happy, or laughing, or having fun is exactly what I would want for her. That doing that shouldn't make her feel guilty or sad, but should make her smile more because wherever I am, I'd be smiling when seeing her happy.

I told her that I wanted the same thing for her dad and for her siblings. And that some people grieve quickly and some need more time. That some people grieve loudly, and some silently. Some people seem to move on quickly and some do not. Sometimes people hide their grief and some people wear it on their sleeve for everyone to see, and that no matter how the other people in her life grieve ... she should NOT feel that she must grieve the same. Nor should she judge them for how they grieve.

I told her that some days things would feel totally normal and other days, it might feel like the world has ended. I told her that sometimes grief would sneak up on her and feel like a punch in the stomach when she wasn't expecting it.

I told her random things will happen that will remind her of something we did, or that I said, and she would just smile and feel all warm and fuzzy inside. That it might feel like I was coming to visit her and say hi, and that she should hold onto that feeling, even if someone else things it's strange.

I told her that every year, when the first snowball fell, she should run outside and make a snowball and think of the snowball song I sing at least once a winter, if not too many times!

I also told her that if losing me was just too hard and felt too overwhelming, that she should ask for help, cry out for it if she needed too. That she should talk to her father, her sister, her brother, a best friend, a counselor, someone, anyone. That it wouldn't make her weak or mean that she was grieving in a "wrong" way.

And then I made a lot of stupid jokes to try to lighten the mood. I said that I hoped I would pass away so far in the future, that we'd both be old ladies by then and that she would forget everything I had just said.

She wasn't ready to smile yet, so we talked some more and I reiterated that I wanted her to be happy. That life was going to bring some really awesome moments and it's also going to bring her moments that weren't so great and that all she can do is what she can do (which is something I say often in every day moments).

I also told her that the sun will always rise the next morning - another thing I say to my kids a lot ... not to downplay what they are feeling, but as a way to say, hey, feel/mad/angry/etc now, but just also keep in mind the sun will rise tomorrow. And I joked that I know tomorrow will come because it's already tomorrow in Australia, so it already came!

She then told me that in parts of the North Pole it's night for months at a time. And she smiled again. She stopped tearing up. And she even managed to giggle a little bit.

We hugged and I told her that no matter what happened, everything would be okay. Maybe not right away, maybe we won't even realize it at first, but it will be okay. And that I knew she was a strong person because she showed it to me all the time (even when she probably didn't think she was).

She smiled. And was ready to get up and do the things she needed to do.

I, on the other hand, had to sit for a while and just breath.

Some Advice for Hard Times

There is a crazy reason this post has come to be - but basically I wrote it in a dream last night and when I woke up I remembered the dream and I remembered moat of what I wrote, so I thought, I should really blog this.

But I also hesitate, because, well, often times I feel like when I do give advice it can fall short or not be a good fit, but this time, I'll let my insecurities go and try to say what is in my heart (and my dreams!) Also, I think the holidays can be an even harder time

And naturally, all my thoughts are coming primarily from my experience with going through cancer.


Dear Friend,

I know you are going through some hard times right now. I haven't been in your exact shoes myself, but I've been through some of my own hard times, and here is some advice I have for you.

Know that even during hard times, there can be moments of beauty. These moments won't make up for the hard times. The won't erase the pain, or the hurt, or the sadness, or the hardness of it all. But these moments will be good and happy. Embrace them. Smile when they happen and hold them close to your heart. Embrace them and let them be what they are. You will still feel sad, tired, sick, pain, etc, but for those moments you will also feel happy, thankful, and it will be nice.

Which leads me to my next thoughts for you: allow yourself to feel whatever you are feeling. Sometimes we want to stuff the bad, sad, unpleasant down and ignore it. We want to put on our happy, smiling faces, and pretend like every thing's wonderful. But you don't have to. It's okay to feel sad or beat up or angry or however you are feeling during this hard time. Your friends won't be mad, in fact, they want to help you. When they ask how you are doing, they really want to know. It's okay to show the world that everything isn't wonderful all the time.

At the same time, sometimes when we are in difficult times, it's hard for us to be happy or to celebrate. But it's okay to celebrate, even in the midst of pain or loss or whatever is going on for you. We as humans are amazing in that we can often feel many emotions at once, and usually half of them are complete opposites of the other ones we are feeling. So you can be happy. You can be sad. However you are feeling, honor that. Be true to yourself and your feelings.

Get good people around you. Sometimes during hard times, we tend to pull away from our friends and family. And while it can be healthy and good for us to be alone for awhile, but don't be alone always. Find some people who will just come be with you. Not necessarily to take you out, or keep you up hours with conversations, etc - sometimes we just need our friends to be with us, no words needed. Gather those friends around. Tell them, hey, I need you to just come and watch tv with me. I don't feel like talking, but I don't want to be alone. People will do that for you. Well, you might have to remind them you don't feel like talking a few times, but they'll get there.

Speaking of having people in your life, get a few people - close, close friends or family (for me, it's my husband) and give them permission to tell you to snap out of it, but only if you really (and I mean really, really) need to hear it. Choose this person(s) wisely though because they'll be walking a fine line should they ever have to say something. A friend* once told me she allowed herself to have a few laps in the pity pool as she needed them, but treading water in the pity pool was not allowed. This is the deal I have with my husband ... I get my laps in the pity pool as I need them, but if I start to get stuck in there, he can give me a (gentle) nudge.

And through all of this, just take it a day at a time. An hour at a time if you need it. A minute at a time if that is where you are at. And when you do that self-talk, pretend you are talking to your best friend. Don't be down on yourself. Don't tell yourself that you shouldn't be feeling/doing one thing and that you should be doing/feeling another thing. There are no should's or shouldn't's. Let go of the woulda, coulda, shoulda's. You have enough on your plate. Let the guilt go. You can't go back and change the past. And today, all you can do is what you can do. Some days that will mean you do the bare minimum to get through the day. And that is okay.

Now a special note to the parents. As parents, we often want to be strong for our kids, or we don't want to cry in front of them. My advice? Cry in front of them. Be honest, say you are sad or scared or sick or however you are saying. That's not to say you will sit down with your 3 year old and talk to him like he's your best friend, or that you will do the same with your 16 year old, but still. Be honest. Your children probably know something is going on. They can probably sense how you are feeling already. And children, when left to fill in the blanks, often do so in ways that are worse than the truth. Not only that, but you'll be teaching them that it's okay to have emotions. If they see you process your emotions in a healthy way (notice I didn't say in a perfect way), they will learn to do the same.

Here's the sucky truth, life is not fair. It just isn't. I wish it could be, I wish I could take away all the hurt and pain and sadness and sickness. I can't. It's not easy to get through. And not every story has a happy ending. But above all else, during these times, you have to just stay true to you, to how you are feeling, to what you are thinking. I can't promise sunshine and rainbows. I can't promise no rainy days. But surround yourself with good people and allow yourself to feel all the emotions - even when they are all over the place or they are conflicting with each other - it's okay. It's not a sign of weakness, it's a sign you're human. And that is just one of the many reasons I love and care for you!

Love,
me

*Wendy is the friend who told me. She was passing along advice from her friend Cee.

Some Days Are Hard Yo

I know I am not unique in this, but some days are just so hard.

I've had a string of hard days here lately, and I can't lie, it's all weighing heavily on me.

Actually, it's been a long summer. I've been sick off and on, run down, worn out. There have been many doctors appointments and more tests than I think is fair.

Yes, I said it, it's all completely unfair. I know, oh, I know that no one ever said life would be fair, yadda-yadda-yadda. I don't really care. I still think it's completely unfair.

That aside, let me tell you how my Tuesday went. My 14 year old, as she was getting ready for school "Mom, you text or message me if you need anything today, okay?"

My 14 year old. A child (who would be mortified to know I called her a child, but she is) who should be light-hearted and thinking about school and all the things high schoolers think about, asking me to let her know if I needed anything.

Pardon me for a moment while I say, this is so fucked up.

You see this weekend was an awful couple of days for me. A migraine, followed by a day of not being able to stand up without getting dizzy, followed by a general not feeling well, followed by the most excruciatingly painful migraine I've had ever in my life. I mean, we were about to go to the ER when the meds kicked in or the headache passed (just as suddenly as it arrived).

And you know who was here most of the time helping me through it? My 14 year old.

This is about the point that I start to feel a bit ragey inside and really, really start to think that this is all incredibly unfair.

But we muster through it. Her and I talk. I tell her this is unfair, that I think this has changed her. She comments that everyone has hard times and that everything in her life has shaped her, not just this.  She says it's fine and deflects to talk about how I'm doing.

Because my 14 year old is wise beyond her years.

She mothers me. She figuratively holds my hand. She stays nearby, on the watch, trying to predict if I will need something: food, water, a bucket, medicine. She calls her father (my husband) to let him know what is going on. She tells her brother to keep it down and to not bother me.

These are the things I should be doing for her if she gets sick.

But no, in this house, often she is picking up slack for me and helping me.

And it sucks so very, very much.

I say things like, I hope this makes her more empathetic as an adult; a caring, understanding person; that somehow this will make her a better person. Which is silly because she is already a better person. But she is also still 14. And I hate that she takes on this responsibility. Just once I'd like her to throw a fit, to get a "NO! I don't want to vacuum! You do it!"

I'm sure that sounds weird, but it's what a 14 year old is supposed to do. But she doesn't. She knows. She knows that I need the help. She knows I'm not making her do stuff just to make her do stuff. She, as I've said before is wise beyond her years. She always has been - even as a young child we often said this about her. I know she is still her, her essence. But I know that my cancer and subsequent sickness has shaped her.

Because some days are hard. They are so hard for me. And I know they are hard for my family. I don't live in a bubble. Things that happen to me do not stay just with me. It ripples out. I see it and hear it from my husband, from my parents, from friends. There is worry there. It still exists.

Everyone knows I'm "okay" but they are also aware that I'm not. They are aware of the hard days, the bad days, the sad days. They love me through them and support me the best they can. And I'm so incredibly grateful for that.

But some days are hard. And there is no getting around it. They are just hard.

I press on. We all press on. We cling to the days that are not hard, or are not as hard.

Because it's not fair. But it's life. We can't pick the hand we are dealt, only play what we are given. So we do the best we can each and every day.

Some days that means the 14 year old asks me to text her if I need anything. Thankfully, most days it means I ask her to text me if she needs anything.

Dear Fellow Walker

Dear Fellow Walker,

I love that you, like me signed up to walk in the Avon Walk for Breast Cancer. You were in the walk with me. That tells me that you had done all the fundraising necessary, that you had accepted the challenge to walk. It also means that I can assume at some point breast cancer has touched your life.

I know, I know. We aren't supposed to assume, but as I've walked and talked to people, I've quickly learned people are here because breast cancer touched them in some way. I've met people who walk for their grandma, their mom, their daughter, their sister, a friend's aunt, a teacher who inspired them. I've met walkers, who like me, walk because they had or have breast cancer.

We are all here, in the same spirit: breast cancer has touched us, we want to make a difference so we walk!

I also know, like me, you were tired when we met. We met at mile 22, where we both chose to stop walking and get on the van to drive us to the end. You didn't know it, but I had just been hit by someone else walking on the sidewalk. I was tired, I was in a bit of pain (that, let's be honest, wasn't too bad, but I had just walked 22 miles and so at that point little things felt big).

You came on the bus. You looked tired, like me. You looked hot, like me. You looked like you had worked hard to get those 22 miles and were now ready for a break. You were a young woman like me. We wearily smiled at each other. I noticed the big sticker you had on your shirt. A pink sticker. It was hard to miss. And it said on it "Survivor Chic" among several pink ribbons.

I instantly wanted to meet you. Another young woman with breast cancer. I don't pretend to think I'm the only one, but at that moment,  I wanted to reach out. I wanted to say hi. I wanted to know your story. It's part of the reason to walk - to hear other people's stories. And I wondered how much we had in common. So I asked politely "When were you diagnosed?"

The look of shock that came across your face, well, it kind of shocked me! "I've never been diagnosed with anything!" You informed me. You wondered why I asked. So I told you, as I pointed (even though I know pointing is not polite) "your sticker" as I double checked to make sure I read it right.

Yep, all pink. With SURVIVOR CHIC printed on it.

"Oh this!" You said, looking down, "Yeah, I just put on because I thought it was cute!"

Wait. What? Did I just hear you right? I'm pretty sure that's when my mouth dropped open. You thought it was cute. I nodded and then turned to look out the window of the van. The woman next to me, who I think sensed that this was not going over well for me, patted my hand.

I stared out that window. Too stunned to talk. You thought it was cute? I was half tempted to lift my shirt, show my scars, make you really look and ask if they were cute as well.

I wondered, why if you haven't had breast cancer, why at a breast cancer walk, you would put a sticker on identifying you as a survivor. Why would you want to be in the same group as me? It wasn't fun. It wasn't cute.

Maybe I'm over-reacting. I had been walking all day. I was tired. I had just been hit by a random pedestrian who clearly didn't think that any of us walking that day were cute.

Maybe you didn't know. My friends, upon hearing about this, offered up excuses for you: maybe you thought it related to some band's song. Or to the television show. Or maybe you were in such awe of survivors you wanted to be like them.

I'm not sure what happened. I'd like to think you really thought the sticker was cute and that you put it on without thinking. I'd like to think you didn't know it would feel like a slap in the face to me. That it would make me want to cry, when I was already at a point in which I was holding back tears. That maybe you didn't realize that cancer isn't cute. It isn't something to long for. Or a club you ever want to be a part of. It's hard. It's painful. It changed me - and not in some glorious I-had-an-epiphany-and-am-now-a-better-person-so-make-a-cheesy-movie-about-me-in-which-the-world-can-think-cancer-was-a-gift kind of way.

I didn't talk to you then. I wasn't sure of how the words would come out. But what I wish I had to said to you is this: As cute as the sticker may be, cancer is not. It's not something you want to be a part of it. It hurts me to see you wear that sticker so casually - like a fun accessory - after all that cancer did to me. I'm sure you aren't trying to be hurtful, but I really don't think that you should wear a sticker that implies you are a breast cancer survivor here, or maybe anywhere, but especially not here and not today.

And maybe we could have become friends. Maybe you would have seen it from my side, and I would have seen it from your side. Maybe we would have both learned something. That would have been good. But I sat, silent, staring out the window, biting my lip to keep from crying. I was just too tired to tell you all of this.

I know it's pretty unlikely you will read this. But if by some weird stroke of luck, you do, I hope you will see where I'm coming from. That I'm not mad. I was then, in that moment, but not now. Now, I hope that you never have an actual reason to wear a sticker similar again.

Love,
A fellow walker and breast cancer survivor

Kids say the darndest things

In the last week, I've had two child-saying-something-about-cancer-experiences that have been, well, awkward.

Miss 11 and I were visiting a group she will almost positively join once we move. It's to replace a group we will be too far from to continue going to.

Anyway, we went and visited. It was lovely. She right away connected with another child there (who happens to be her same age, plays softball, and is homeschooled)! Everyone seemed friendly and welcoming and the group seems to participate in a lot of things. She was so happy at the meeting she asked if we could join right then (um, no, because you are already part of the other group and need to finish the year there).

As we were getting ready to leave, my kids were talking about their tablets. They each have a tablet and/or computer and/or mp3 player. They are blessed with technology. Pretty much all of it gifts from relatives or hand-me-downs as the next older child gets a gift! However, their original tablets (which are eye pads. Which I type as eye pads to keep spam bots from searching and leaving spam) were given to them when I was diagnosed with cancer. Because people wanted to help anyway they could (and it did).

So my daughter says, without missing a beat "Yeah, thanks mom for getting cancer! It worked out nice for us!"

Now, first of all, my daughter isn't really happy I got cancer. No tech can be better than having a healthy, active mom. Second of all, no one there knew I had cancer. This is not the first time something like this has happened. For my kids, cancer is a way of life. I had it. They lived through it. They were pretty young. My youngest probably doesn't have memories of me before cancer. We are still dealing with side effects from treatment and I still go to a fair amount of doctor's appointments. For us, in our house, it is what it is. For everyone else though, these statements can be jaw-dropping.

Cue the awkward pause. The adults looked at me (which is what usually happens).

"You had cancer?" they manage to spit out.

Yes, I say, sometimes I'll say breast cancer about 3 years ago, sometimes I don't give more info.

Another pause. Then, every time, a form of, "Well, you look good! I'd never have guessed you had cancer!"

Thank you I say, because I mean it. I appreciate not looking sick. I looked sick for a while. There was a time when if you were meeting me for the first time you would have known for sure it was cancer or you would have known for sure something big was going on.

But it's so, so very awkward for me, for the other adults. People aren't sure what to make of it. I think in general, the younger someone is, the more shocking hearing about cancer is. I don't know for sure, but it's my guess.

Then the kids are already talking about the next thing. The moment is gone. It almost feels like a secret has been told and before you can finish processing it, the conversation has moved on. Not that my cancer is, has been, or ever will be a secret, but it feels like it.

It is hard to meet people for the first time - I often wonder, do I mention cancer? Do I not? It will probably come up eventually, so I tend to wait for that moment when it comes up naturally ....

For example a few weeks ago, at the same child's basketball game, another mother asked me about my curly hair. So I said "Well, it was never this curly! But then I went through chemo and this is how it grew back. It's been a few years and I'm still not used to it." This lead to a convo about how I had cancer, what kind, how were things today. There is still some awkwardness there, but it's much less. The conversation flows more naturally and doesn't feel so forced.

I wonder, will it always be like this? Will time lessen it. In 10 years, I doubt my children (who won't really be children anymore) will just blurt out "my mom had cancer!" Unless, I guess, it comes back, but that's a whole different ball game.


Fast forward to today. We learned that we have two new babies coming in the family in the fall. I was talking to Mr. 8. We were talking about how exciting it was and how babies are always a good thing. I told him "I can't wait for these babies to be born so I can hold them! I love babies! And I love them even more when I'm not the one who has to wake up in the middle of the night with them!"

He laughed at that,  and agreed it's better to get to just hold a baby for a bit than have to wake up in the middle of the night. Then he says, "Boy mom, you must be really happy you got cancer so you can't have any more babies! I bet waking up with three of us are enough! And if you didn't get cancer, how many more babies would you have had? Probably a lot."

Um, oh, yeah, wait, what? I didn't even know what to say.

I can get it from his perspective. I can get how this makes sense. I can see his 8 year old brain trying so hard to make sense of everything. But, um, happy I got cancer? Yeah, no.

I took a few seconds and I I just told him that. "You know, I understand what you're saying, but I'm not actually happy I got cancer. Though, I love you and your sisters and I think three kids is a wonderful number to have! Even without cancer, I probably wouldn't have had any more kids."

He said ok, okay, then asked if I wanted a rainbow loom bracelet.

Just like that. Once again, this bombshell (to me anyway) gets dropped. I feel thrown off. And within seconds the kids are moved on to the next thing.

And I have to remind myself, this is their life. Cancer has existed for them for what is most of their life. Not in actual time, but in what they can remember of life. It is what it is. At home we talk openly about it (though, I want to point out, it's not like we sit around and talk about it all the time). So it makes sense that the can drop it into any conversation without giving it a second thought.

It still throws me off though. It still gives me pause. But, it also makes me glad they can talk about it, that they don't feel like it needs to be a secret. When they voice these thoughts and ideas, it gives me and my husband a chance to talk about it.

I think at the end of the day, I prefer it this way.

Though, I still don't like the awkward pauses it can bring!

Is It Friday Yet?

Thankfully, yes, yes it is Friday.

It's been a long few weeks.

Our house has been crazy - we've been painting and had new carpet put in this week. So furniture was moved (mostly to the garage). Thankfully, it's all mostly done now and we can start to put the house back together. Well, minus all the stuff we need to pack because clutter won't help sell the house.

On top of that, over the last few weeks the garage door broke, a toilet broke and kind of flooded (but thankfully not too much) the bathroom, and my car was in the shop.

In the same last two weeks, cancer has stolen the lives of two people I know.

And oh, my headaches are back. And so is a terrible bout of insomnia.

I might be just slightly stressed over here. And by slightly I mean, of course, absolutely totally and completely stressed.

The house is being put back together - which is nice. The garage is fixed. The car is fixed. The toilet is almost fixed. Soon we will be moved and things will start to fall into a nice routine. That's all the easy stuff.

The hard stuff is the loss. The unfairness of it all. I just, I just don't know. I've been thinking about this. Since getting cancer, I've connected with a lot of people who also had or have cancer. This means loss is now a regular part of my life. It never gets easier. Of course, all loss isn't born of this cancer-connection, but much of it is. There's probably a lot more to say about all of this. For the moment, I'll leave it at I can't wait for the day we can cure cancer. All cancers. Regardless of where they strike and who they strike.

But today is Friday. Which means it's the weekend. This weekend we celebrate my husband's birthday. He deserves a fabulous birthday. He's been working so hard: at work, at our house, at the house we are moving too.

We will celebrate him this weekend. We will try to put the house more together and maybe pack a few more things. I will find time to just be. To just be still.