Turn, Turn, Turn

Today is Janet’s birthday. I ‘ll celebrate her by carrying on her memory and life’s mission. She wanted more, much more, for folks living and dying of stage 4 metastatic breast cancer.

Just last week Paul and I were on a kinder open house tour – and I saw a lady with a beanie on. Clearly no hair underneath (this wasn’t for fashion or style – this was chemo). I made a point to join her tour group so that I could talk with her and let her know I’m in her tribe. I was ready to flash my freshly revised port scar and all! As I approached her from behind, she turned around and faced me, I was taken aback, it was my friend Julie (was it a badge of honor that I knew the cancer lady on the school tour? Ugh, I dunno, maybe?…probably not, I’ve lost all sense of perspective at this point).

Julie is living with metastatic disease. She’s my age (ish) and has a daughter Nora’s age. Her life is very different from mine, yet exactly the same. She’s a mom. She’s going on kindergarten tours. She’s trying to figure out the lottery system for her child — same as me. BUT, she has to do all this planning wondering how long she’ll be on this earth – will she be here to watch her child go to kinder? 1st? 2nd? 3rd? You get the point. I want to scream, kick and shout for her.

So then, we continue on with the tour. Paul and I trying to picture our kid(s) at the school, marveling at the dance studio and art room – but I couldn’t stop putting myself in Julie’s shoes. The pit in her stomach as she walked the halls wondering how long she’d get to see her child grow and learn.

It’s GD heart wrenching. I hate it. I hated stealing glances at her on the tour knowing exactly what she was thinking. I wanted to scream like both of my toddlers do every.single.day. THIS IS NOT FAIR. ITS NOT FAIR. SHE’S BEING CHEATED. HER FAMILY IS BEING ROBBED.

All I can say is stage 4 needs more. It’s not just a cute hashtag. Please please please do what you can. No matter how little, because it matters. If you’re able, donate HERE.

To everything (turn, turn, turn)
There is a season (turn, turn, turn)
And a time to every purpose, under heaven
A time to be born, a time to die
A time to plant, a time to reap
A time to kill, a time to heal
A time to laugh, a time to weep
To everything (turn, turn, turn)
There is a season (turn, turn, turn)
And a time to every purpose, under heaven
A time to build up, a time to break down
A time to dance, a time to mourn
A time to cast away stones, a time to gather stones together
To everything (turn, turn, turn)
There is a season (turn, turn, turn)
And a time to every purpose, under heaven
A time of love, a time of hate
A time of war, a time of peace
A time you may embrace, a time to refrain from embracing
To everything (turn, turn, turn)
There is a season (turn, turn, turn)
And a time to every purpose, under heaven
A time to gain, a time to lose
A time to rend, a time to sew
A time for love, a time for hate
A time for peace, I swear it’s not too late

 

IRL

 

You are exposed. And unconscious. And it must be difficult to trust. I honor you, Dear One.

My job is to help your surgeon take away the cancer. I get a bird’s eye view of the process. The surgery begins and I feel your warm skin through my gloves. I wonder what stories you already have and the ones that are yet to come.

We carefully remove your breast. It never gets easy to see or to do. You must know this. It never feels natural, it never feels cavalier. It feels sacred to me. Every. Single. Time.

Julie posted this amazing article from a nurse in the OR during a mastectomy. It feels appropriate to re-post in celebration of all of us who have undergone this trauma. Breast cancer is not the easy cancer. We are cut up, amputated, re-amputated, disfigured, chemo’d, radiated and on and on and on. Some of us die. Some of us live. Whatever the outcome, the disease is forever seared into us, our bodies and our loved ones.

It’s a really hard road to walk. I’m forever grateful for my community of amazing BAYS folks who hold me up (and who I try my very best to return the favor to). NONE of this is cosmetic. NONE of us elect to do this.

This article is a beautiful tribute to all of us who have had to chop or slice our boobs and/or breast tissue off and deal with the aftermath. I don’t want to speak for all of us, but my chest is forever changed, Not in a good way.

I’ll post more about my surgery and recovery in the coming days. I find it easier to talk about when I have some distance — so bear with me!

For all my new non-cancer friends, NOPE. Saying crap like “oh you’re so lucky, you got a boob job” or “you get a new new rack” is SUPER OFFENSIVE – please just bite your tongue and stick to “I’m holding space for you”  or “sending you love and light” or “I’m so sorry you’re dealing with this, how can I support you?” – those are the most non offensive things you can say – BUT pah-lease don’t say shit about “how lucky I am to get boob job” (sic), for the love of christ. It’s super ignorant. So sad that 7 years in I’m still dealing with these IGNORANT comments. UGH. BLECH. BARF.

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10.11.17

As I sit here and type this, Doris Day’s Que Sera, Sera is replaying in my head over and over. I distinctly remember my mom singing that song to me (as I do for Nora & Peter) when I was a little girl. It’s always stuck with me and I feel like it’s been my anthem for life over the past few years.

Which brings me to the point of this post. It’s hard to believe that 10.11.12 was FIVE years ago. Que sera, sera. What will be, will be.

Thankfully, I’m happy to report that my latest test results indicate that I’m still NED (no evidence of disease). Wahoo! Happy 5-year cancerversary to me!

As most of you know, making it 5 years without a recurrence or distant metastasis for a triple negative-er is a really big deal. At this point (assuming the scientific literature out there is still accurate) my rate of recurrence drops significantly. Metastasis could still rear it’s ugly head one day, but I’ve learned to embrace the Que, Sera, Sera part of life!

Does this mean that I’ll rest on my laurels and go back to “normal” life? No my friends, there is no such thing as “normal” life anymore – just the new normal – which includes exercise (ugh.), self-care (read: switching to non-toxic make-up, personal care products, laundry detergent, household cleaning items, and trying to eat “clean” while balancing ALL of that against just living my life and enjoying myself!) and continued check ups with Garrett every 3 to 4 months.

But seriously, as shitty as things have been, they’ve been equally as amazing. I wouldn’t trade a thing about the past 5 years because I’ve grown so much as a person. Of course, I wouldn’t wish cancer on anybody, but for me, it was (and is) a profound experience. I’ve met so many beautiful souls along the way. Without my community, I wouldn’t be where I am today. So I thank all of you who have been there for me and my family — holding space for us and holding us in your hearts and prayers when we needed it most. I hope to return the favor as many times over as I can.

For now though, I’ll happily continue cruisin’ along in this lane. It’s not a bad lane to be in…

xoxo,
Andrea

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Photo Credit: Piece of Heart Photography

 

Pinktober – Enough with the Pinkwashing

It’s that time of year again. Thought I’d throw a little information your way to help you navigate all of the pink washing that’s a’comin’

1 in 8 women will get breast cancer. 30% of those initially diagnosed with early stage disease will go on to become metastatic (aka Stage IV). 4% of newly diagnosed breast cancer patients are Stage IV at initial diagnosis. 113 people die from Stage IV metastatic breast cancer (MBC) each day in the US. There is no cure for Stage IV and only 2-5% of research funding goes to MBC.

What we need is to find a cure for this disease. We don’t need pink mugs, pink scarves and/or pink ribbon keychains.

While some women live for years with Stage IV disease, others do not. Their collective voices aren’t always able to be strong as they’re enduring treatment while simultaneously trying to live life.

It’s up to US to make their voices heard. To demand money be directed toward finding a cure and supporting actual individuals living with metastatic disease.

This year I’ve lost 2 friends to MBC, and their deaths should mean something. I have another 5 friends who are living with MBC and I fear 2 of them will die before long. This is scary and so sad.

Please do me (and every other person you know who’s been diagnosed with breast cancer) a favor, and don’t get sucked into the pink washing. Please ask where the funds for pink products are going. Please research those organizations to see if any of that money actually goes toward patients or research.

I’ll make it easy for you. Below is a list of 4 organizations I think you should give your money and time to, if you’re so inclined. Just skip the rest of the noise….

Breast Cancer Action
Breast Cancer Action is not your average breast cancer organization. We’re fiercely independent and refuse corporate funding from any company that profits from or contributes to breast cancer. That means we can ALWAYS put women’s health first.

We’re focused on achieving health justice for all women living with and at risk of breast cancer. Radical and compassionate, we never shy away from the hard truths. We tell it like it is about breast cancer: 40,000 women die of this devastating disease every year, and we don’t have nearly enough to show for the billions of dollars raised in the name of breast cancer.

BCAction was founded in 1990 by a handful of women who were living with and dying from breast cancer and who demanded answers about their disease. Today, BCAction is a national grassroots organization with members across the country. Together we’re challenging the status quo and working to address and end the breast cancer epidemic.

Metavivor
METAvivor is the only organization in the US that exclusively funds MBC research through a scientific peer-review process. We award research grants to individuals with a clinical or other doctoral degree who are actively engaged in areas of metastatic breast cancer research, and whose proposals show distinct promise in making a difference for the stage 4 breast cancer community.

Our mission is to transition metastatic breast cancer from a terminal diagnosis to a chronic, manageable disease with a decent quality of life.

100% of proceeds from every fundraiser (after event expenses) goes into our research grants.

Breast Cancer Prevention Partners
A science-based advocacy organization that works to prevent breast cancer by eliminating exposure to toxic chemicals and radiation.

BAYS
Bay Area Young Survivors (BAYS) is a support and action group for young women in the SF Bay Area who are living with breast cancer.

Through monthly support group meetings, an online network, and community-building events, BAYS members share information, experiences, and resources. Our goal is to break the isolation of living with breast cancer by providing a community built on compassion, understanding, hope, and inspiration.

Athleta

Some of you may have noticed my mug in Athleta’s October catalogue 🙂

I wasn’t sure if I was going to post anything about it because the catalogue shoot happened in mid-April before Peter and I landed in the hospital. I can’t tell you how many times I thought about the photoshoot while I lay in the hospital bed willing Peter to stay inside. Part of me felt like an ass for doing it and highlighting my post-cancer pregnancy. Stupid girl, you let your guard down, now this terrible thing has happened — that’s what you get…. (oh, the psychology of it all).

I was so superstitious this summer, it’s not even funny. So I decided to keep mum about it.

Thankfully Peter arrived safely (save this whole jaundice issue we’re currently working through) so I suppose there’s nothing to jinx anymore (though with my luck, I’ve learned to never say never).

Here’s what I can say at this very moment in time: There IS bold, beautiful, messy and joyful life in the wake of cancer. Yay!

As always, please think before you pink…….


Here’s a link to the current Chi Blog post about the photoshoot. There may be another post about me at some point in October. I exchanged emails with their social media person while I was in the hospital. I’m a little afraid my comments were incoherent since I was so preoccupied with bed rest and all things pre-term-labor-related. If they happen to post something I’ll be sure to link to it here for you.

 

Living in the Shadow of Triple Negative Breast Cancer

Last weekend was my 3-year cancerversary. With each year that passes, my cancer experience moves a little bit further away from me, yet at the same time, it cozies up to me even more.

As time goes on, you’d think I’d feel further removed from it, but I don’t. That’s the cruel thing about cancer, it’s the gift that keeps giving. I live in what feels like a constant fear of recurrence. Some days and weeks are better than others. But some stretches are really bad. Like a python winding its way around my body, tightening it’s grip on me, slowly squeezing the life out of me. To understand what I mean, let me explain a bit about my subtype of cancer.

Triple-negative breast cancer (TNBC) is a subtype of breast cancer that lacks three important hormone receptors that are used as targets for cancer treatment. These receptors are important because they reveal where the cancer is most vulnerable and help determine how to best treat it. Since triple-negative breast cancers lack the presence of all three of these receptors, this subtype of breast cancer is more difficult to treat and more likely to recur. Triple-negative breast cancers have a relapse pattern that is very different from hormone-positive breast cancers: the risk of relapse is much higher for the first 3–5 years but drops sharply and substantially below that of hormone-positive breast cancers after that.

Doctors and researchers have yet to figure out what causes TNBC. So survivors like me undergo major surgeries and intense chemotherapy protocols in the hopes of killing the cancer and keeping it at bay forever.  Unfortunately, because our cancer is not hormone positive, we don’t get the mental safety net that is 5 to 10 years of hormone blockers. We don’t get to take a pill that we know is preventing our bodies from producing the hormone that causes our cancer.

PS – I know that taking tamoxifen (or something like it) is no walk in the park. I realize I sound a bit like a brat since I don’t have to deal with 10 years of hot flashes, mood swings, libido drain, inability to carry a pregnancy and a whole host of other crap. But please understand that having no ability to do anything to ensure my cancer doesn’t come back is a total mind fuck. All we’re told is that our survival rate will increase dramatically if we can make it to the 5-year mark.

I’ve no choice but to set my 5-year timer. Tick tock, tick tock, tick tock. Ugh.

In the months leading up to my cancerversary this year, I wasn’t feeling right. I was having a lot of trouble with my lungs, and a lot of swelling and pain around my ribs, implants and armpits. I put myself back into physical therapy to try and kick start my sluggish lymphatic system. But, the issues persisted. My lungs and my bones ached. And not in a “you have a new baby, all moms are exhausted” kind if way. No, no, they ached in a scary cancer kind of way.

I was winded, exhausted and becoming increasingly terrified I was having a recurrence or worse, mets. When I looked at my daughter, my brain wouldn’t allow me to see her grown up. It was protecting me from the possibility that I might not be here to see her fully grown up. The feelings were becoming crippling. I couldn’t fully enjoy caring for my daughter. I had to do something. Set my mind at ease once and for all.

So I got a PET scan 5 days before my cancerversary. I told very few people I was having the scan done because I was really scared the results wouldn’t be good.  I just had a premonition that my good fortune was running out. You see, I’m one of the lucky ones. I have a perfect, beautiful, healthy 9-month old daughter, who was born after cancer. I was blessed enough to be able to carry her to term and birth her into this world. It was the most incredible thing that’s ever happened to me. My life is back on track, right? I’m a new mom, with a new lease on life, right? Cancer is behind me, right? I survived this, right?

But why do I feel such dread and doom hanging over me?

This is what it’s like to live in the shadow of triple negative breast cancer. As I wait to make it to my arbitrary finish line where I might be able to breathe a bit easier, I wrestle with some serious PTSD.

Thankfully, the results of my scan came back clean. I’m still dancing with NED (No Evidence of Disease). Yay!

I feel like I’ve bought myself a few months without as much worry bubbling directly under the surface of my everyday life. Now, when I workout, I happily push my lungs to the point of burning because I know there are no tumors in them. When my joints and bones ache the next day, I don’t sweat it, because I know I don’t have bone mets.

Only 725 more days to go….. Wish me luck.

My Legacy

It’s been a long while since I’ve posted anything of substance.  I’ve not had much to say these days — so I went back into my archives and found this draft post — from October 21, 2013.  I’ve not edited it at all. I figured it was best to just post it — grammar/spelling warts and all. So here goes………….
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Lately, I’ve been thinking a lot about my legacy.

Legacy is defined as “something transmitted by or received from an ancestor or predecessor or from the past”.

For me, as you most of you know, at this point, it’s very unlikely that I’ll have my own biological children. If you’ve been following my blog, you know I’ve struggled with infertility and then cancer struck. After aggressive chemo nuked my entire body, including my ovaries, there’s little possibility that I can use my own eggs for a pregnancy. Hell, I’m still technically in menopause and have no clue if I’ll ever get my period back (TMI? Don’t read this blog then!).

But, all of that said, I still think about my legacy.  When Paul and I were picking our egg donor, her family health history was very important to us. We looked for red flags, like cancer, heart disease, metal instability etc. Obviously, you don’t WANT any of that if you can avoid it. Thankfully, our donor and her family, on paper, lacked those “bad” traits. Though I’m no dummy, that shit can hit her family tomorrow. I’m living proof of that.

Now, that the dust has settled with my own treatment, I realize that my own family will have to grapple with my diagnosis as it relates to themselves and their own families.  My thoughts immediately go to my brother Bob’s daughters.  Will my darling nieces have to get the BRCA gene test? Since I was BRCA negative, will that test and it’s results even be meaningful if they do have it? Will Bob and Sarah worry every day about their daughters’ susceptibility to cancer given that their paternal aunt got it?

I also think about my maternal cousins; but I’m less worried about them as they’re grown women who can make sound decisions for themselves. What about my first cousins’ children? I realize that’s a bit far removed, but I still think about it.

Finally, we all know that breast cancer doesn’t only impact women – men can get it too. For some reason, I feel cavalier on this front. I feel sure that no men in my family will be impacted. But that’s probably stupid of me. So to my brothers and my male cousins — FEEL YOUR BOOBIES. Sorry, it is what it is.

Ugh. I’ve been so busy thinking about me and getting through this ordeal. I didn’t stop to think what sort of reality and worry my DX may have wrought on my family and extended family.

My only hope is that this starts and ends with me. That my body simply went haywire and that’s the end of it.

Geez, reality does bite.