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.

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.

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.

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?

We've got to do more

Yesterday a prominent voice in the metastatic breast cancer community passed away.

She died.

From breast cancer.

She was too young.

She leaves two young sons, a father, family, and friends.

Holley and I were not friends. We didn't talk on the phone. We didn't text. We didn't hang out. We were in similar circles, sometimes the same circles. I admired her for what she did. I loved her video. I was glad it got people talking.

And yet, her death has my heart buzzing. And my head buzzing.

Buzzing with sadness. With anger. With frustration. With guilt.

Several breast cancer advocates and bloggers have passed away recently.

And you know what? It feels like too darn much.

But seriously ... we've got to do more.

Ditch the pink ribbons. Dare I say it - fuck pink ribbons.

Pink ribbons are not curing cancer.

But we are bombarded with them. They are on eggs, on yogurt, on sweaters, on jackets, on cement mixing trucks, on fire trucks, on drills, magnets for the car, for the fridge.

You can't hardly move around this country without seeing a flipping pink ribbon.

And what has it gotten us.

Oh, I know. We can talk about breast cancer more openly now. We don't have to hide away.

Except when pictures on facebook are removed.
Or when survivors are told they are being grumblers.
Or when you don't look like a breast cancer patient.
Or when you smell bad from treatment.

Oh, I know. It's raised money for a cure.

Except for it's raised money for salaries.
And for "education."
And for awareness.
Or it's just pocketed. 

Oh, I know. It's taught people about breast cancer.

Except for those who think you only get breast cancer if it runs in your family.
Or that people don't die from breast cancer anymore.
Or that people don't actually know their risk of getting breast cancer.
Or that 60% of people know almost nothing (or nothing) about advanced breast cancer.
Or that people think 1 in 8 women of any age will get breast cancer.

Wait. Back the truck up?

Let me tell you, from where I stand, what the pink ribbon has done for us.

It has made breast cancer seem beautiful.
It has made breast cancer seem not difficult.
It has made breast cancer sexy.
It has made those who are dying from breast cancer feel unwelcomed.
It has made people who haven't been through it think it's an "easy" cancer.

Can you sense the anger? The frustration? The sadness?

Can you see that blanketing every product imaginable with pink isn't helping?

The same number of women are dying every. single. day. today in America as they did in 1980!

Where is the progress? Why aren't we talking about this more? Why isn't this being discussed?

Why are we pink washing a disease that is killing men and women every single day.

Yesterday, two little boys went to bed with their mom gone. A husband went to bed missing his wife. A mother, a father, missing their daughter.

That's just one of about 107 families who lost a loved one yesterday.

One.

Of One hundred seven.

That doesn't include the estimated 155,000 women living with metastatic breast cancer. An estimated 155,000 women who will almost probably die from cancer. And if not cancer, something related to cancer. Or treatment.

Estimated. 155,000.

Know why it's estimated? Because no one actually tracks it.

I guess if you're going to die anyway, no one needs to keep count.

Do
You
Feel
My
Anger?

Do
You
Feel
My
Sadness?

I'm here.
Tonight I got to say good-night to my children. To my husband. To granny.
I'm here.

But too many women are not.

And we aren't talking about it. Not enough of us are talking about it.

People want the pretty side of cancer. The uplifting side of cancer. The women-so-strong-they-beat-it stories of cancer.

But we can't change the numbers. Or the statistics. Or the heartache. Or the pain. If we ignore it. If we pretend it's all a bunch of pink unicorns running on pink rainbows among pink clouds.

I read tonight, over at Metathriving, this paragraph that Susanne posted

Goddamnit, won’t someone hear us? When will someone hear us? Pay fucking attention here? We’re dying! The “awareness” model isn’t doing shit! We need to change focus to research! Hear us! Don’t buy into the pink-painted Komen drivel. Send your money where it will make an actual difference. Metavivor.org. MBCN.org. LBBC.org. Just to name a few. But pay attention. Pink ribbons are not a cure. Listen to us. Early detection is not a cure. There is no such thing as “cancer-free” for breast cancer. Listen. 

And I read it, and my brain was screaming YES! THIS! SO MUCH THIS!

I don't have stage iv breast cancer. I don't know why treatment worked for me and not others. I don't know why so many families are without loved ones when my family gets to be with me now. But I do know this, I'm not going to sit back and be silent. I'm going to be here, I'm going to be listening. I will hear what the woman dealing with this will say. I will take it to heart. I will spread it to as many people as I can.

I am listening.

And my heart is breaking for so many. And my head is hurting.

But I'm listening. And I won't stay silent.

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.

Holly's Story

The next story comes from Holly.

Before reading, here's what you need to know about Holly

Married 35 years

2 adult children

professional job in the legal field

Hobby: avid knitter (maybe make that rabid knitter)

And now, Holly's story

My story began in April 2014 when I had a mammogram on the way to a tasting for my daughters wedding. I was called back for an ultrasound on a second date but didn't think anything of it because I have dense breasts and often get a call back for an ultrasound. However, this time the radiologist said he thought I should have a biopsy on my left breast. I still wasn't concerned as I'd had a biopsy in the mid 1980's that came out clean and I resisted the biopsy because the biopsy was a very unpleasant procedure (I was sitting in a chair in a mammogram machine and had a large needle (no lidocaine) inserted in my breast to guide the surgeon. I passed out due to the pain and my chair rolled back with my breast still in the machine). The radiologist was insistent and I scheduled the biopsy for May. I was so convinced this would be another false alarm I told the radiologist to call me with the results. A week later I got the call at work that the biopsy was positive for breast cancer. I was absolutely paralyzed with fear, anger and depression. I called my husband and 2 friends and then proceeded to make an appointment with a surgeon and oncologist.

My surgeon is young and beautiful enough to be a model. She was wonderful and told me that I'd live to my 90's and die of something other than breast cancer, this would be a bump in the road. She recommended a partial mastectomy or lumpectomy because my tumor was small, 2cm. My consultation with the oncologist was not quite so pleasant, she explained I had HERS2+ breast cancer, it was aggressive and I should start chemotherapy ASAP. I refused as my daughters wedding was a month away and I didn't want that joyous occasion marred by the side effects of chemotherapy.

While sitting on my surgeon's exam table waiting for a lymphedema pretest I got a call from the hospital that my father had been admitted and I needed to immediately get there with his Health Care Proxy and Living Will. I rushed to the hospital with documents in hand and had to make difficult end of life decisions for him. The doctor didn't think he would last the night at that point. Less than a week later I had my first lumpectomy and the following day my father died. The next day, while still on pain medication I was planning my father's funeral. Prior to the funeral I received a telephone call from my surgeons nurse that the pathology report showed I had DCIS in the margins and I would need more surgery. After another consultation with my surgeon and an MRI that showed nothing, I had another lumpectomy and the DCIS was removed.

My daughter was married July 12th, I had my port put in July 17th and started chemotherapy with Taxotere, Carboplatin and Herceptin on July 18th, 2014. The side effects of the chemo were flu like symptoms and diarrhea but they paled in comparison to the bone pain from the Neulasta shot. I was grateful that the shot boosted my red blood cells enough to work but the pain was horrible for 1 1/2 days. Luckily through a cancer buddy from work and What Next I learned that Claritin taken before, during and after the day of the shot helped with the bone pain. The first time I saw my oncologist after chemo I complained about the diarrhea but hadn't kept track of the frequency so couldn't tell her how bad it was. I missed a family wedding that required a plane flight because I couldn't be that far from a bathroom. I spent the weekend of the wedding depressed and angry that I couldn't be with my family. After my second infusion I kept daily track of side effects on a calendar I found on line and was able to demonstrate how bad it was. We postponed my third chemo and discussed switching from Taxotere to Taxol. I refused the change because my research indicated Taxol has a greater likelihood of neuropathy than Taxotere. My dose of Taxotere was reduced by 20% and I was given a prescription for Lomotil.

I started losing my hair a week after my first chemo infusion and was bald by August 1st. I decided I would not be a victim to this dreaded disease and threw myself the first of 2 henna parties. I got a beautiful henna tattoo on my head and it gave me the courage to go out bare headed. The wigs itch like crazy!

I finished my last strong chemo November 11th and began the radiation part of the journey. I discussed hypo fractionated radiation with my radiologist as it was winter in New England and I didn't want to be trudging through the ice and snow in the early morning for radiation. Luckily he agreed I was a candidate and I had 16 radiation treatments and 4 boosts to the tumor area. I finished radiation on December 31st, 2014 in time to celebrate the new year.

In February my husband who had been my rock during my treatment was diagnosed with prostate cancer. He was told to lose as much weight as possible and surgery was scheduled for June 2, 2015. He was able to lose 25 pounds and the surgery was successful. Thankfully he made a rapid recovery and was almost his old self in July 2015.

 A beautiful court reporter I worked with cut her hair really short, similar to a man's butch haircut. She looked sleek and stylish and gave me the courage to ditch the wig in March 2015.

My Herceptin infusions lasted until June 29th, 2015 and I finally finished all the recommended treatments for my HERS2+ invasive ductal carcinoma. I was really glad to be DONE with treatment!

We celebrated both of us being NED (no evidence of disease) by going on a 12 day trip to Ireland in August 2015 that had been postponed from 2014 due to my treatments.

The things I found helpful during the horrible year were journaling my thoughts and feelings, keeping a breast cancer board on Pinterest, doing daily guided meditation, my wonderful family and friends who kept telling me "you can do this" over and over and some short term therapy in March 2015 when I had a scare that cancer spread to my bones. Luckily, a bone scan revealed it was arthritis and bursitis. I thank the researchers, doctors and patients in the early clinical trials for Herceptin every day. Were it not for them and their efforts it is likely I would not be here to tell my story.

Linda's Story

Linda has offered to kindly share her story with us as well.

My name is Linda Walsh, and I'm a mother, wife, and grandmother.  I'm also a three year survivor of Breast Cancer.  I live in Crystal Lake, Illinois, which is a very good community to raise a family.  People here still help each other and when I got sick, many people helped out my family by bringing meals, giving me rides, sending cards and so much more.  My diagnosis and treatments took about 16 months of my life.  It was not an easy journey, and without my family, friends, and church members, I might not have made it through the whole way.

My diagnosis came at the worst possible time for our family.  In August of 2012, my son, age 19, had fallen from a tree and was severely injured.  Two major surgeries, 11 days in the hospital, and he had to drop out of college because of the injuries.  He had shattered his shoulder, and his elbow, and had other major injuries.  I quit the part time job I had and went into caregiver mode.  He needed help for basic needs.  It was a grueling month or so that included being driven to doctor appointments, physical therapy, and so much more. 

Then I got my yearly notice for my mammogram. Didn't think anything of it and went.  I had false positives before, so when the tech said to come back later for an ultrasound, it still didn't occur to me that anything was wrong.  They set me up for a biopsy the next week, and on our 24th wedding anniversary, I had the biopsy.  Two days later, we found out it was cancer.

I never knew there were so many kinds of breast cancer, and the stages.  I then had to have a lumpectomy, a port installed and chemo started before Christmas.  It was like having the flu for months.  They ended up taking me off the heavy drugs after four times out of a scheduled 6, because I was so weak and ended up in the hospital 3 times. 

Radiation was in the Spring. And I had never been so tired in my life.

It probably took a good year afterwards to feel human again.  The experience was pure hell, and I would not wish this on a mortal enemy.

As for Pink for October, I like the awareness that the pink ribbons get, but I do think it has been too commercialized.  All these companies claim they donate the proceeds of their products but sometimes, it's as little as 1 percent.  And pink products are everywhere, from yogurt, to water bottles to shampoo (a real slap because most of us lose our hair during chemo) and many other products. 

One organization that I dealt with during this whole battle was the American Cancer Society.  I had been involved with Relay for Life for years because a good friend's husband had passed away from lung cancer at age 42.  So that was the organization that I called.  They sent me booklets about cancer, food to eat, and all kinds of other information.  There is an 800 number that is answered 24/7 that will help you with any questions.  And they also provided me with a wig, and scarves and hats for free during the battle.  To me, this is the organization that really does a lot for patients.

I do believe that most of the breast cancer comes from the environment.  I grew up in Cicero Illinois, and three of my friends also has had breast cancer.  One of the ladies passed away from breast cancer at age 52, leaving behind a daughter, a spouse and grandchildren.

I recently became a grandmother for the first time to a baby girl named Natalie.  I'm also due for my yearly checkups in October.  And if the cancer comes back, I will fight it again, with all my heart, for that little girl.  Even though Cancer is a Bitch, and it's treatments are horrible, I would go through it all again for my family.

Oh, and even though I am on yearly check ups now, I still get a bit paranoid and upset and lose sleep over the upcoming doctor appointments and mammograms.

 

**

On a bonus note: Linda is also a knitter and crocheter (there seems to be quite a few of us out there!) And when she sent me her story, she told me it was okay to not use it, but it helped her a lot just to put it into words. I'm so glad it did and glad I can share it here!

Chris's Story

Our next story is from Chris.


My story is simple.  I was diagnosed with DCIS in the right breast.  When I saw the surgeon he said I could do a lumpectomy because it was localized; however, he was concerned about a spot the radiaologist missed at the 5:30 position and the other two spots were at 2:00.  Our radiaologists leave something to be desired in this town I live in.  They have a reputation of being lax and not following through and rushing through the mammograms.  I was sent for an ultra sound and the technician could not find the cancer and had an attitude of "your wasting my time" which did not help my morale.  My surgeon ordered an MRI on both breasts because of the spot that was missed.  The MRI picked up a whole bunch of spots in my left breast.  I had dense breasts and was never told.  So I went two years without getting a mammogram.  Next time I saw the surgeon he told me they wanted to do and MRI biopsy on the left breast.  I told him to forget it just take them both.  I didn't want to end up with another type of cancer that was going to require radiation and chemo.  Because the cancer was localized I didn't have to go through that treatment.  However; the surgeon who did the reconstruction was not available for my reconstruction after the mastectomy so I ended up getting three more operations to get the reconstruction done.  The first one was a DIEP used with fat from my stomach.  It didn't take.  I was losing weight so consequently I lost volume so I opted for implants.  Had that surgery then had to go back because he left me lopsided in the stomach and the belly button disappeared.  So that had to be fixed.  I had the nipple reconstruction on June 1st this year and am waiting to hear if the insurance company is going to cover the cost of the nipple tattooing.  It took me two years to decided whether or not I wanted nipples made so when he contacted my insurance company they refused to pay on the grounds it was cosmetic.  He was on the phone with the Group Health doctor for some time and they finally approved the nipple reconstruction.

It has been a nightmare for me and I am still suffering the shock of it all.  Right now I do not feel like the reconstructed breasts are part of my body.  I feel detached from them.  Maybe after the tattooing is done I might feel better about myself.  Anyway, that is my story.

 ***

Chris has e-mailed me an update that she did get her tattoo done. She's still getting used to it though! 

Carol's Story

Today's post is from Carol. Carol says "I'm a painter and digital printmaker, a native Brooklynite who will live in Brooklyn until death do us part.  I live with my boyfriend.  I'm a firm liberal; love cats, good TV, social media, books, food, and lots more.  I'm glad to be alive."

Here is what she has to say about breast cancer:


I was diagnosed sixteen years ago with stage 1 breast cancer (I was fifty-one at the time).  I'm a Brooklynite and was able to get treatment at MSKCC.  I had a lumpectomy and sentinel node biopsy (outpatient).  My tumor turned out to be triple positive.

Because my cancer was HER2-positive, I had four rounds of A/C, but I didn't need Taxol.  At that time, Herceptin was being given to only metastatic b.c. patients.  I had radiation as well.

Five years of Tamoxifen followed by five years of Femara.

Having cancer and then undergoing treatment was, of course, life-altering (at least at that time).  I was able to work (part-time, as I had been doing all along), do my artwork (I'm a painter and, now, a Photoshop printmaker), and socialize.  I want to never again have to go through that (obviously), but I always am expecting that, someday, I may develop another cancer.

I credit the amazing medical team at Memorial Sloan-Kettering Cancer Center for saving my life, and many, many other lives.

{Brandie}, I wish you the best.

Sincerely,

Carol

A bit late, but ...

Once again this year, I asked for people's breast cancer stories, and a few people chose to share with me!

Starting tonight, I'll be sharing their stories and I'll keep sharing until the end of October - which is at the end of the week! And don't mind me while I say, thank goodness this month will be almost over! =)

Surviving and not surviving

For the last few years, October has been a hard month for me.

This year, it is particularly so.

My goodness, I chastise myself, why can't I be like the women on tv: happy, sparkly, pink, shiny, proclaiming with fervor that early detection saved my life and cancer was a gift and it changed me for the better. Why can't I be a better survivor?

The picture of breast cancer as this happy thing to be celebrated with pink parties and show your bra day and don't wear a bra day and show off your cleavage and buy pink scissors and eggs with pink ribbons and yogurt with pink lids and hey, while you're at it, you can even watch porn for the cure!

It's all so upbeat and happy.

And it's driving me to the breaking point.

Because that is not my reality. That is not helping me. And in talking to other "survivors," it's not helping them either.

At least, I think to myself, I'm not alone. I'm not the only person who is struggling to deal with this.

Except, nagging at the back of my head, is the knowledge that there are also people in the same boat as me who are enjoying all of this, who hang bras on their front porch and attend the pink parties and wear with pride shirts that say "survivor." And around us people talk about them in such uplifting ways: She's a fighter! they say She's so strong, no way cancer would take her from us! they compliment her. Look at how positive she is about this, her great spirit got her through! 

And somehow in the middle of all of this, I just want to crawl into my bed, curl up into a ball, and cry.

I want to cry because I do not feel strong.
I want to cry because I do not feel positive.
I want to cry because I do not feel cancer is behind me.
I want to cry because of my migraines - that started from treatment.
I want to cry because of the bone and joint pain - from treatment.
I want to cry because I have to take yet another nap because I never did get energy back.
I want to cry because I wonder if my kids will remember me when I was energetic and healthy.
I want to cry because of all the friends I've lost.
I want to cry because a friend just told me her cancer came back and is stage iv.
I want to cry because another friend was just newly diagnosed.
I want to cry because someone else messaged me to ask how she could best help her friend who is newly diagnosed.
I want to cry because I'm grateful that I'm still alive.
I want to cry because October, the Pinktober version, doesn't feel like it's for me.
I want to cry because I think I must be doing it wrong.
I want to cry because another woman has died from breast cancer.
I want to cry because I wonder if maybe someone didn't make a mistake by allowing me to get through treatment successfully when women who were smarter, wiser, and were making a greater difference in this world did not.

And there my friends, is the crux of the problem.

A month that is supposed to be so good, happy, and uplifting, and it just leaves me feeling terrible and not good enough. A month in which I am supposed to be held up as a good example - after all, I had breast cancer but I was "strong enough" to beat it, leaves me feeling weak and unworthy.

Do not be mistaken: women who have died from breast cancer were not not-fighters. They were not not-strong. They were not not-positive. They were not any less deserving than I to go through treatment and come out on the other side.

And yet, they didn't.

They were strong, intelligent women. Women who were loved and valued and making a difference in this world.

And all the pink parties in the world didn't save them. All the bras as decorations didn't save them. Buying pink things didn't save them. Football players wearing pink socks didn't save them. 

And it breaks my heart.

Because I'm still here.
And they are not.

October is a hard month for me. I can hardly leave the house and not be inundated with pink stuff and breast cancer awareness. For that matter, I can hardly be in the house and not be inundated. It's on tv. It's on products we've bought (not for that reason, but it's there). It's in the ads we get in the mail and the newspaper. It is everywhere.

I haven't found my place among it all yet. I haven't figured out what my role in all of this is yet. Most days, I am overwhelmed with just getting through the day.

Please don't misunderstand what I'm saying here - I know that people mean well. They want to be supportive. I appreciate that. When a friend says her son wears pink socks to his football game in honor of his grandmother, it touches me. When another friend shares the story about how a whole neighborhood came together to paint pink pumpkins to honor a neighbor about to start treatment, I think that's awesome. When someone else dyes a stripe of her hair pink to honor her mother, I wonder if I should get a pink stripe too!

That is touching and means something to that person and those they are supporting or who's memory they are honoring. But pink eggs? And yogurt? And scissors? And pink socks on pro football players? And all the races for the cure in which almost no money goes to a cure? Misleading facts on billboards and ads? Women showing off healthy breasts to honor the disease that took mine from me? Interviews with women who no longer have breast cancer that paints them as winning the battle because they are strong (implying that those who "lost" the battle must not be)? Companies that hike the price of something up 50% because it pink and brag about donating as little as 1% back to breast cancer organizations?

All of that? All of that weighs on me and makes me so angry. It piles on top of everything else I am feeling this month. All the sadness. All the pain. All the worrying that I'm doing it "wrong." The gratefulness to still be here. The wondering of why me - why did I get cancer? Why do I still get to be here? The thankfulness of a loving family. The support of friends. The knowledge that 110 women will die today from breast cancer.

This is October from where I am standing. This is what I see when I step up on my soapbox to talk about breast cancer and awareness and education. This view that encompasses so many feelings and emotions and fears and worries and happiness and love. It's all there. But the darker side feels amplified this month. Like, to counteract the image of the smiling, happy, bald woman (which I am not) I must balance it with the realities that I face.

I survived breast cancer.
But I do not feel like a survivor.
And when this month is focused on survivors, it makes me feel like a fraud.

Here Comes October

October is just around the corner. And I probably should have asked this a while ago, but I'm asking now!

I am looking for pieces to share here about breast cancer: as a patient or a caregiver or spouse or child or however you are connected to it. You do NOT have to be a blogger to share something, or if you do write a blog, you can send me something you've already published there and get it in front of a new set of eyes. I'd really like it if I could have some people write about recurrence and/or mets and/or male breast cancer (since I can't write about it as having gone through it). There is no required length nor agenda you need to follow (if cancer was your epiphany life changing moment, share. If cancer sucks and you hate it and you still struggle to deal with it, share. If you love pink, share. If you hate pink, share). All I ask is that all pieces be authentic and true to you - however that looks.

Please let me know ASAP if you can contribute in October!

I would love it if I could get a lot of view points to share here. I love getting to share what I've been through - my journey - and my path, but I know there are so many other journeys and paths to share and I'd love to do that here! 

Looking ahead: I'd like to share stories of people going through ANY cancer, so start writing now. I'm thinking maybe of starting that after the holidays. Again, all stories welcome - as long as they are authentic to you, as a person who has/is going through it, a caregiver, a spouse, a child, etc.

Please, let me know - in the comments or via e-mail - if you'd like to write something here this October! Thanks so much!
 

My 9 Year Old Gets It ....

Sometimes, okay - too much of the time, I feel badly for my kids.

I wish they had a healthier mom who struggles with less things.

I also realize this is an irrational thought. I can't control it, they can't control it, and it's not like other families out there don't have their own struggles - their own up and down moments.

I also realize that I'm not the only mom who feels not good enough. What's that saying? Behind every kid is a mom who thinks she's doing it all wrong? Or something like that.

Still, this is how I feel and I struggle with it.

I suppose my kids will learn empathy and compassion, and might be better able to help someone else who is dealing with similar issues. This is a good thing. They are learning, and they are understanding.

This is the hardest with my 9 year old. He doesn't really remember me from before cancer. This bothers me. I know in time the other two may not remember a before and after either, as childhood memories morph together and become just a bit fuzzy with time.

But he was 5 when I got cancer - and not very far into 5.

Tonight at his baseball game (in which he played quite well if I brag for a few moments) I had an allergic reaction to something. No, I don't know what, and yes, I'd probably be willing to pay you pretty much anything if you knew what it was!

 We got home and he said to me "It's pretty strange that you would get an allergic reaction like that and we don't know why"

Yep, I agreed it is. Then I said my body is just sensitive and works differently then some other people's bodies.

It seemed a simple enough response. He thought for a moment and told me "No, I don't think your body works differently. I think it's the cancer. I know you don't have it in you right now mom, but I think it changed you and changed how your body worked."

Well. From the mouth of babes and all of that.

He gets it. I feel much the same way - cancer, the treatment, all of it, I think it changed me - and not in a I-now-have-meaning-in-my-life-and-I'm-a-better-person-who-appreciates-every-single-moment change. But now I'm a person with migraines, hives, rashes, itchiness, chronic fatigue, low iron, severe insomnia, and some other wonderful medical things.

Cancer left it's mark. The treatment left it's toll. This is what life-post-cancer looks like for me.

Just like that, he explained it. It made sense to him. He didn't seem mad, or angry, or confused. He wasn't worried, or scared, and anything. Just cancer changed me, this is where I'm at. It is strange that it happens, but it just is.

And I thought, my 9 year old is wiser than me. And he's wiser than some other people I know.

From the mouth of babes. This sweet boy who loves me no matter what. This sweet boy who wants to help me feel better, and yet, is just able to accept that this is what it is, and can I have dessert now?

And yes, he got a dessert.

Which reminds me, last week I had a knock-me-down migraine. In a rare twist of my migraines, it left me very very sensitive to sound. All sounds pretty much hurt. I didn't want to hear anyone talking to me, or clocks chiming, or music, or the sounds of the tv. I needed silence.

I rested for a while and rejoined the family. My boy asked me what he should draw. I said he should draw a pair of headphones that would make it so my head didn't hurt when people talk to me. So, he drew headphones, told me to hold the paper up to my head, and when I did, he whispered he loved me and wanted to make better.

And then ran off to play.

He's a sweet kid. All three of them are. I think most kids are actually.

I hate that my kids have to live through my medical stuff. But I'm pretty glad, and proud, of how they seem to handle it and take it in stride. I don't think I could have done that at his age. Or the way my 12yo takes it all. Or the way my 15yo takes it all.

But they just roll with what life hands our way, and even my 9 year old gets it.