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!

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.

I've become a commercial

Today I have to go to the doctor's and get a shot. (Boo because I hate hate hate needles. Even still. Even after being poked a million times. Still hate them!)

This shot is medicine that I'm pretty sure comes with a novel that lists the possible side effects.

I feel like I'm now one of those people in medicine commercials you laugh at. You know what I'm talking about, right? The side effect list seems to go on forever and run across the screen over-layed on a really pretty picture. And it all seems funny because the side effects seem way worse than what the medicine is treating.

Trust me, I've laughed my fair share. I've mused aloud about who would ever take the medicine because the issues seems easier than the medicine would be.

I suppose I became that person the second I took chemo. I remember thinking about how ironic it was that the doctors were telling me that another cancer was a side effect and I just couldn't wrap my mind around it. I mostly ignored it because it just too much to think about. I also understood that even though they had to tell me the side effects, there was little chance that it would actually happen to me ::knock on wood::.

But Tuesday I'm going in with my eyes wide open. I've looked on-line and read the awful horror stories. The doctors have talked to me about what could possibly happen that's pretty major. And there's more of a risk than getting cancer from chemo drugs.

People who have opinions that I seek out have said they wouldn't get the medicine if it were them. My husband isn't thrilled I'm getting it and would be very happy if I told him I changed my mind.

And yet, I'm going to let the doctor give me this shot.

I also read stories about people who had almost no side effects from it. The doctor gave me the option of another medicine and after comparing, I decided on the shot. But secretly, I'm so nervous to go. I'm worried that I'll make everything worse and compound my already stupid medical issues.

To be honest, I'm pissed I have to even need to think about this. I'm frustrated with my own body. I think it's super unfair that at 37 I learned I have osteoporosis and because I want to, I don't know, take a bike ride with my kids when summer rolls around, I have to do something to treat it. But because of my age, I only have two options. Neither of which excite me or make me happy.

When the doctor called to let me know that I had osteoporosis (when I was just getting a dexa scan as a baseline), I'm not going to lie: I cried. And cried. And cried. I mean full on sobbing.

It's another thing to deal with.
It's another pre-existing condition in my medical file.
It's more doctors appointments.
It's more medicines.
It's more co-pays.
It's more worry.

Not to seem overly emotional about this, but I'M SO OVER THIS CRAP.

Sigh.

So today, I'm going to feel like I belong in a commercial. One that I would have laughed at in what feels like another life time. This time I'm not laughing though. Sigh.

Surgery Preparations

So two days ago I underwent a total hysterectomy with bilateral salpingo-oophorectomy. This is a fancy way of saying they've removed my uterus, cervix, ovaries, and fallopian tubes.
(I'm writing this before surgery and setting it to post later, just in case you were reading for an update!)

I've been delaying this surgery for a few years, but it was time to do it now for several reasons. I'm hoping my iron levels start to go up. This should help prevent a cancer recurrence. And stop all the issues I've been having with ovarian cysts.

And still, I'm not quite thrilled about having another surgery and going under the knife again. But I'm smart and trust my doctors and recognize that it's time. And if there's anything I know about, it's getting ready for surgery.

So I thought, I'd share with you what I did to prepare for this upcoming surgery. Most of which I've done before my other surgeries.

Around the house:

• I cleaned what I could and tried to get as much laundry done as possible.
• Since I usually drive the kids to their things, I left a list of regularly scheduled things for the husband to drive.
• They have a few things coming up that are one-time events. I have already lined up rides for the kids with other (very helpful and kind) parents.
• We have temporarily set up the room on the first floor for me so I won't have to do stairs for a few days. 
• Left the husband with a list of important passwords, not that I think he'll need them, but just in case. 
• I took care of things on my to do list that I've been procrastinating on (it's amazing what surgery prompts you to do!)

In the bedroom:

• Fresh sheets on the bed because that's just nice any time! 
• I've pulled out some clothes from the dresser drawers/closet. 
• The clothes are now folded and sitting on the top of the dresser so I have easy access to them (sometimes after surgeries, it's hard to pull those drawers open - this was an issue after my mastectomy and with some of my reconstruction so I just do it now with every surgery and it just makes things easier).
• I bought a paper holder and did not put paper in it, but it perfectly holds the tablet, the kindle, and my cell phone.
• I got a holder for my phone cord so it won't fall to the floor on me.
• I have a special wrap light so that if I need light in the middle of the night, it's right there for me.

Random things:

• Clipped my nails so I won't have to worry about it later
• Bought some pajamas that are wicking fabric in case the hot flashes kick in really badly
• Bought some button down shirts - I used these after my mastectomy and it was so nice. Someone suggested that I might want to do that for the first few days after this surgery as well. I had already gotten rid of my other button downs (as I don't normally wear them)

Things I didn't do this time that I normally do:

• Make some dinners in advance
• Line up dinners from friends
• Line up some activities for the kids 
• Get a haircut so I wouldn't have to deal with my long hair - which I will now. Bummer.

For relaxing and passing time as my body heals:

• I splurged and purchased kindle unlimited and got my 10 book limit.
• I used my library's on-line site and downloaded my 5 book limit.
• I was gifted the Texture app and it's all ready to go.
• (Side note: the texture app gives you access to a lot of magazines and you can read whichever ones you want, whichever articles you want for a monthly fee. It's pretty amazing and I am already in love with it and have read so many interesting things. It's great for those moments you have 10  minutes to read, or when you aren't feeling well and you don't want to have to remember details from a book!)
• I stacked a few actual books in case my eyes are bothering me and I can't look at screens.
• I stacked a few videos in case I want to watch something. 
• Have some games ready to play on the tablet along with netflix, amazon prime, and on demand app. 
• And of course, I have some knitting ready to go

This surgery is a bit different than the others because my husband will be able to work from home for a while - which will make things so very much easier. And while this means that he will be working, without a commute time, he'll have more freedom to do things like cook, help with cleaning, and being the taxi for our children.

I know I have a lot of things listed to help pass the time, but I am definitely using this time to just let my body heal. I have been feeling so unhealthy lately. So not only will this be forced time to heal from surgery, but to just heal my body in general. Especially with my husband getting to work from home, I'm trying to frame it in my mind that this is really just a vacation for me and a time to relax. Not that I'll do nothing, but I'll take it as easy as I can.

Anyway, I think I prepared well before surgery. In fact, I'm positive I over prepared by a lot! I suppose I'd rather be over-prepared and not under-prepared!

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.

National Cancer Survivorship Day

Today is National Cancer Survivor Day.

 

Per definition "An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition." from the National Coalition for Cancer Survivorship.

 

The minute a doctor tells you that you have cancer, you are considered a survivor. You remain a survivor for the rest of your life.

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

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

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

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

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

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

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

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

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

There are not ways to eliminate cancer. 

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

I wish we had. But we haven't.

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

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

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

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

For me, today is just any other day. 

Other days in my cancer story, I mark or I celebrate. 

But today, today, is just an ordinary Sunday.

This is 37

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

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

Now, for the serious part.

I'm 37 years old. I can't lie, I wasn't sure that I'd see 37. I didn't share this widely at the time, but when I was diagnosed, based on my specific cancer, age, and treatment, the statistics said that there was a 27% chance that I would be alive in 5 years. That's really hard to hear.
While I know I'm not a statistic, and it didn't feel like a dramatic death sentence, it still felt like a punch in the gut to hear. I never thought "when I'm 37," it has been "If I get to 37."
 
I know sometimes when I say things like that to Eric, it is hard for him to hear. I never said it to be depressing or dramatic, but it just what was for me.
 
It was hard for quite some time for me to plan in the future. I'm sure it was a defense mechanism, but I stopped thinking about long term plans. I stopped thinking about how I would spend retirement, or what I would do after all the kids left the house. That was hard to do. Because thinking about it would always end with my brain coming back to that 27%.
 
So I focused on doing. Doing things (when I could, when I was able to).
 
But I'm here. I'm 37. And that tightness in my chest feels a little less tight. I'm starting to just be more, instead of doing things, instead of just filling the time.
 
I know that none of us really knows what tomorrow brings. And I know some of you are dealing with a lot more than what I do. But it was still hard. And felt like a heavy burden to carry.
 
I'm glad I'm turning 37 today. It is a birthday that some of my friends didn't get to celebrate. But I'm here. I've got great friends and family. I'm here. I'm living. And I'm working on being. And I'm working on worrying a bit less. And I'm working on trying to just enjoy the here and now instead of letting the little things nag me or the big fears consume me.
 
So, happy birthday to me. And happy unbirthday to all of you, who helped me get here through love and support and humor and all the many ways you are blessings in my life.
 
And an extra shout out to the husband Eric - my rock, my protector, the guy who would walk through fire for me. And my mom Ellyn, who never makes me feel bad when I have to call her crying, who has supported me always and has always been there for me.

 So here we go. This is 37.

Reading, Justin Cronin, and Chemobrain

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

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

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

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

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

I. Loved. That. Book.

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

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

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

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

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

Again, frustration hit.

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

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

But.
But.

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

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

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

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

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

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

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

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

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

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

And I can't wait.

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

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

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

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

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

=)

#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. 

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.

5 years ... and one week

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

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

5 years.

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

Like celebration exciting.

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

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

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

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

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

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

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

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

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

This makes it hard for me to celebrate.

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

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

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

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

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

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

I can't lie, it felt good.

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

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

But.

But.

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

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

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

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

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



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

xoxo 

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.

What comes next?

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.

Where Do I Sign Up For Just One Year?

Recently, CJ (Dian) Corneliussen-James, of Metavivor, wrote a letter to Fran Drisco of the National Breast Cancer Coalition.

CJ, in her letter, makes many points I agree with. We need to make sure that if we are talking about the end of breast cancer, our eggs are not all in the prevention basket. We need to make sure that stage iv patients are included. We don't just need prevention, we need treatment, life-prolonging and life-saving treatment. There are many woman living in the US alone with stage iv breast cancer. If our focus is solely on prevention, we are basically leaving them out in the cold, on their own.

I do not have stage iv breast cancer. I have not had stage iv breast cancer. I fully admit, I don't know what those with stage iv breast cancer feel like, or what they face. I can sometimes imagine parts of it. I still use my voice, as I have many times on this blog, on social media, when talking to friends, to advocate for stage iv breast cancer. I recognize that while I had breast cancer and someone with stage iv has breast cancer, our experiences, our treatments, our lives are different. (note: this extends to people who did have the same stage as me, or maybe were stage ii or stage i. We all have individual experiences).

I imagine at times, those with stage iv breast cancer must look at those of us who are NED (no evidence of disease) and feel jealous. And wonder why I am NED when s/he is not. I imagine that my complaints on twitter might seem trivial to my friend with incurable brain cancer. I imagine when I talk about a conversation with my daughter about if I were to die, that must seem easy to the mom who is about to enter hospice because all treatment for her breast cancer has stopped working.

I can imagine all of this. I can fully understand how one could feel this way.

I agree it's not fair. I often wonder why I got to be NED when so many really fantastic woman did not. I often wonder why I am alive and friends have died.

Which is why I speak up. I talk about stage iv breast cancer. I talk about funding research. I talk about not excluding those with metastatic breast cancer from October breast cancer awareness campaigns. I share facts with friends, strangers. I talk about these things in person, on-line, in this blog. I share blog posts written by metastatic patients so that other people can see things from that woman's perspective. I read the posts so I can learn too.

I am not perfect in this, but I do try.

I try to be a "fearless friend," (a phrased coined by Rachel Cheetham Moro - who passed away several years ago from breast cancer).  I try very hard.

So when I was reading CJ's letter, and then I came to this part

Breast cancer is not the problem. You lose a breast, you have a medical year to endure and life goes back to normal. I know I will take flack for this statement … but hey … while I sympathize that some people spend many years thereafter in fear of metastasis, the simple truth is that their problems pale when compared with ours. I and every other metastatic patient out there would trade places with these former breast cancer patients in a heartbeat – their odds of survival are 70% … ours are 1-3% … that’s a huge difference in odds.

I kind of did a double take.

Wait. Did I just read this? Did she really say I just had to endure a year and then life goes back to normal? Is what I went through being trivialized?

I'd like to think that CJ did not mean to trivialize what I went through. I imagine there is a lot of frustration and anger for the lack of research into stage iv breast cancer, for all the times that stage iv breast cancer patients have been eliminated from the conversation. I believe she would trade places with me in a heartbeat. I don't doubt any of that.

But, um, can someone tell me where I sign up for my one year? Please?

Me, on the 4 year canceriversary

It's been four years. And I feel like maybe I'm almost sort of close to starting to feel normal.
I get it. Four years is a gift really. Given that metastatic patients have a median life span of 26 months, my four years really is a gift.

But it wasn't a year of cancer, and then poof! All better. It was a year of cancer treatment. That led to infections. That led to lymphedema. That led to physical therapy. That led to menorrhagia. That led to low iron. That led to more surgery. That led to allergic reactions. That led to hospitalization. That led to thyroid goiters. That led to chronic fatigue. That led to migraines. That led to brain fog. That led to missed social events. That led to missed work. That led to missing things with my family. That led to new medicines. That led to new side effects. That led to, well, a lot of things.

It wasn't just a year. It's been a crapload of things that all seem to pile up. It's been days where I can't get out of bed. It's been days where I feel useless. It's been days where I feel like the worst mother ever.

And yes, it's been fear - fear that the cancer will come back. Fear that the pain I experience today will never leave. Fear that the side effects won't get better. Fear that I will never find normal.

These are my experiences and my fears.

I realize these are different fears and worries and issues that those with stage iv breast cancer are dealing with. I realize that the fact I'm still here, four years later, to deal with all of this is a gift in itself.

But it doesn't make my day-to-day life any less painful. It doesn't make the migraines hurt less. It doesn't make the joint pain disappear. It doesn't make another basketball game I have to miss magically get canceled and rescheduled for when I'm feeling better.

I will continue to be a fearless friend. I will speak up about metastatic breast cancer. I will continue to push for awareness and education. I will continue to push for more funds into research. I will keep doing this.

But don't let that fool anyone. I still have difficult days. And hard days. I won't trivialize any one's cancer experience. I will continue to be a voice of advocacy and love and understanding. Because I believe that this is the best path to continue down.

Can't We All Just Work Together?

My 2012 Avon walk TEAM

It seems lately I've noticed some things going on both in real life and in social media.

Okay, none of it's new, it's just bothered me more lately.

There's this whole cancer competition that some people take part in.
If you've been in it before, you know what I mean

Oh, you had cancer once? Well, I had it twice.
My tumor was way larger.
Huh, no chemo for you? Aren't you lucky. I did chemo.
Your doctor only gave you 28 radiation treatments? I did more.
16 rounds of chemo? Nice. I did 32.
Stage ii? I'm stage iii.
Stage iii? Oh I'm stage iv.
You did implants for reconstruction? I did diep. It's way better.
You still eat sugar? I gave it all up to be healthy.
Oh you think cancer sucks? I don't, so you're doing it wrong.
I worked through chemo. You didn't? It's a shame you aren't as strong as me.
Thyroid cancer? Pssh. That's easy cancer. I had brain cancer.
Oh you were treated at the local hospital? I went to the best downtown so I could have the greatest chance to be cancer free.

Alright, I admit - three of these I wrote based on what people implied. The rest, I've actually heard or read

Regardless, the cancer competition is strong in some people.
And all I can think is what the hell people?

Does it matter who had it worse? Doesn't it all just inherently suck?

Listen, I get it. Chemo sucks, so not getting chemo might seem easier, but maybe that person had to do radiation and that made them sick? Or have surgery that was hard to recover from? Or maybe that person has 2 young children so any treatment - with or without treatment was difficult. Or maybe that person didn't get sick, didn't have chemo, doesn't have other extenuating circumstances, but cancer still sucks.

Sure, we can argue that there are varying degrees of cancer suckage, but it all sucks none-the-less.

And guess what? If we are all sitting here worrying about who had it worse, if we are all busy fighting over what's "good" cancer and "bad" cancer, or dividing the community with ads where people say I have the "bad" cancer and I'm jealous of those with the "good" kind, how can we come together to fight against cancer. Together. All of us. One big group of people. Fighting to end cancer once and for all.

Cancer is a complicate disease, because it's not one disease - it's many diseases. Even in the same cancer - i.e. breast cancer - there are different subtypes.

Sometimes researchers try one treatment and discover not only did it help the cancer a they were studying, but it helps cancer b and cancer c and even cancer d. So we need to work together for all kinds of research - sometimes very, very specific types of research, and other times, wider research.

Sometimes congress tries to cut funding, so we need to join forces to write letters, make phone calls, rally people to also do that. We need to work together to make sure that funding is in place.

Sometimes, some organizations don't use the money in a good way. So we need to work together to make sure people know that is happening. To use our voices to encourage those organizations to do better.

All of us.
Not just one of us.
Or those that are in boat A, while ignoring those in boat B.

Not only that, but we need more than cancer patients and cancer survivors to join these ranks too - we need our families, our friends, our caregivers, our doctors, we need a lot of voices to join in with us so that we can be louder, stronger, heard.

But if those of us in the cancer community are bickering among ourselves, what will the people looking in see?

They won't see a group they want to join in. The won't see a cause they want to pick up and fight for. They will see infighting and complaining and brokeness and they won't want to be a part of it. Then those who are being downplayed, or made to feel less than will leave. They won't want to be a part of it either. And pretty soon, instead of coming together to work for a common cause, we will be left fractured, broken, and making smaller marks in this world.

This is not a legacy I want to be a part of.

This is not a competition I want to be a part of.

There aren't any gold medals for the person who has the worst.
There aren't any gold medals for doing cancer "right."
There aren't any gold medals for "being the best cancer patient."

The stakes, are infinitely higher than that.

If we won't, or can't, work together, we will continue to see really wonderful people die from cancer. We will not see science advance. We will not see some research happen.

People who have/had cancer will start to suffer from depression, anxiety, worry, pain, isolation, frustration alone. People who are already dealing with so much, will also spend time wondering why they can't do cancer right.

I do not want to be exclusive. I want to be as inclusive as possible. I want to talk about my cancer experience in an open and honest way, and I want you to have room to do that as well. I want us to work together, to raise our voices to fund research, push for better science, to help those that are struggling.

But ...
If you are going to turn cancer into a competition, I have to step away from that.
If you insist that how you do cancer is the right way, I have to step away from that.
If you are going to downplay an entire group of cancer patients as not as important because it's not your cancer, I have to step away from that.

So let's just not do that. Let's work together. Let's support each other. Let's acknowledge that at all stages, types, grades, subtypes - cancer just sucks. Period.

Because at the end of the day, cancer is cancer is cancer. If we can't all stand together regardless of type/stage/etc, how can we expect to find a way to get rid of it?