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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10.11.19

On 10.11.12 I was launched onto a new and different path. Not a good path, not a bad path, just my path. I’m not mad at it.

Happy 7 year Cancerversary to me!

10.11.18 – 6 years later.

6 years later. It seems long, but not distant. Does that make sense? The pain memory has faded, but the muscle memory holds it all. Strange, isn’t it?

6 years later and I find myself in another conference room. On this particular morning, I don’t receive a call from Dr. Huo (thank God!), instead, this conference room is where I busily work away at my new job as a People Partner at a cool company, working with, and supporting, really smart and motivated people. I feel really happy on this particular 10.11.

4 weeks ago I started a new chapter and went back to work. The adjustment hasn’t been that bad. Paul’s been a great support and has taken on a lot more kiddo duty so that I can ramp up. I really love working and I think I’m doing a good job keeping it all in perspective and maintaining balance in my life between the kids, the hubs and self care time. That said, I’m only 4 weeks in, so the train has plenty of time to come off the tracks!

In all seriousness though, things are good, really good. Life seems to have reset itself. This will never be something that I forget, that I don’t think about often. In fact, I continue to take cancer booty calls from PAMF on a regular basis. But, it’s sort of become woven into my fabric. My close friend circle is filled with so many BAYS pals. The lines are all blurred and I love that. I love it. It’s who I am now, and I kinda dig the new me.

This is what 6 years later looks like for me – a full head of hair – lots of chaos – never a perfect family photo – and most importantly, crazy fun with Paul, the kiddos and Maisey, Maise…..

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STATS:
6 years
1 amazing hubs
1 amazing Maisey dog (whose namesake is now pretty well known – Maisey Hirono)
2 beautiful, amazing kiddos
1 amazing new job!…..

 

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.

Life’s Difficult Lesson

5.1.2017

We all die. That’s the one universal truth, I suppose. Nobody approaches this topic better than my friend Janet (see all my links below to her talk, music video and article). I met her through BAYS and boy am I glad I did. She is a spitfire and she is wise. She is a bright light and she is intense emotion. She is alive and she is dying. She is a contradiction. She is…..well, she just is.

Janet’s been metastatic for many years. She’s enjoyed periods of non-treatment and periods of intense treatment on and off for 10 years.  The first time Janet and I hung out one on one a few years ago, we talked about her reality. She’s the first Stage 4 metastatic person I’ve ever been close to. She told me that she’ll be in treatment for the rest of her life until the treatment simply stops working or she decides to stop treating.  Plain and simple. Black and white.

See, that’s what I adore about her. No bullshit. When she paid me a surprise visit early on during my bedrest stay with Peter. She didn’t mince words. A pediatrician herself, she knew the shit we were up against. I told her some of my naive thoughts, and she calmly, yet gently brought me back to earth. Preparing me for the potentially devastating outcomes that might’ve been for Peter. I’m so grateful to have someone like that in my life. A straight shooter who cares and comforts at the same time. Perhaps its the cancer club that makes us this way? I dunno. But it’s a sisterhood beyond anything I’ve ever experienced in my life.

Now, it’s my time to be there for Janet.  She’s at a crossroads and her treatment is diminishing her quality of life — which until this point — has been exceptional. When I sat with her at her house last week, she shook her head and told me “This isn’t living. How I feel — this sick and weak– this isn’t a life.” I read between the lines, but she went on to be very clear. She’s seriously contemplating stopping any further treatment. Chemo isn’t working. Isn’t going to extend her life measurably and is making her feel like shit. Rendering her useless on the couch all.day.long. For someone who scales mountains on the regular — she is down and out.

In the non-cancer world, we’ve all been conditioned (for some odd reason) to rally and cheer and champion someone who is dying. “keep fighting” “don’t give up” “you got this” “are you sure?” “just a little while longer” “keep going”.

Now that I live in the cancer world, I intrinsically know that when someone tells me they’re done — I get it. It’s not something to decide on a whim. It was extremely heart wrenching for me to just nod my head at my friend, blinking back my own tears, while holding her hand and telling her it’s ok if she wants to stop treatment. Make her *feel* my support for her decision. Don’t put her in position to comfort me. Don’t put her in position to defend her decision. Selfishly, of course, I want her here on earth as long as possible. But realistically, at what cost to her? It’s not worth it. I love my friend and I want what she wants. Only she knows what’s best for her. I’m just here to support and love her.

Oddly, when Janet visited me in the hospital when I was on bedrest with Peter. I remember making a joke that “surely this penance will buy me out of any cancer recurrence or metastasis, right?!” I went on to say that if I were to get cancer again, I wouldn’t have the strength to enter treatment again. Having been knee-deep into bedrest at that point I was physically and emotionally spent.  I was tapped out. Janet didn’t say what most would….. “oh don’t worry, you won’t get cancer again!” She didn’t shy away from it. She simply said “you’ll find the reserves to do it. you just will.”

Knowing that’s how Janet approaches life. I fully respect her decision to be done. I know she found her reserves and she’s tapped them to the max. Damn, has she ever lived. I am truly honored and privileged to know her and hug her and love her. I will continue to do so for as long as I can.

Below are links of Janet’s speech, music video and an article about her. Janet I LOVE you and insist on celebrating your great, big, bold life NOW.