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!

Stop with the pinkwashing.

Every year I get more and more frustrated by the pink washing. Once again I’m reposting my PSA below (with a few slight updates).

When I wrote this 3 years ago, I had lost 2 friends to MBC and was worried about 5 more. Of the five I was worried about, only 1 is still alive. I hope that is a sobering statistic for you. I want you to feel the shock value of that statement. In their wake they have left small children, partners, siblings and parents and their own personal hopes, dreams and lives. They were freaking robbed. Its GD insane to me. Stop buying pink shit and please donate to causes that matter. Of course I’m biased, but who better to get your information from? So, here is my annual pinktober post. I hope it’s reaching a new audience this year.

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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 and 1 in 1000 men (Beyonce’s dad just announced that he was treated for 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.

“What’s up y’all, what’s it gonna be? Who’s on the line for your homie Al B.?”

Anyone? Test 1,2 – is this mic on? Who gets my title reference? My east coast peeps? My Bucknell peeps? Link HERE if you don’t get it!

OK – so: “What’s up y’all, what’s it gonna be? Who’s on the line for your homie Al B.?”

Hey Al B., my name is Andy
Please sit back and check this rhyme…
The worldwide recall of my implants
Made me feel crazy in the head
So I talked to Roy – my boy
And we’re gonna swap that shit out
October 21st is the day
2 weeks to recover is what he says
The new implants will be round and smooth
But they aren’t anatomically shaped
So we’ll do a lot of fat grafting
To try and make them look normal
I’ll probably look like a porn star at the end of the day
But at least I’ll have peace of mind
That the new implants (probably) won’t lead to another cancer

Harumpf. I don’t think I’m the next Eminem….

 

Go F Yourself Foobs!

Hello my friends! It’s been a minute, hasn’t it? I’m blogging from a darkish/panicked place so please indulge me…(I’ll post some kiddos pics below for proof of life!)

So in yet another wonderful turn of events – there’s been a worldwide recall on the implants I’ve had in my body for 6 years. Yep, the FDA and the implant manufacturer finally are recognizing the statistics that we’ve all been hearing about for years. Women are getting lymphoma due to their textured implants. For a long time, the US refused to link causation to the implants (while Europe did). The chances of this happening are actually quite slim – but anything over 0 is too much for me.

Feel free to read up more on it HERE. Here’s the spot Good Morning America did on it.

What’s super messed up is that most folks who have these implants and spacers are breast cancer patients/survivors. We’re not talking about the general population who had elective cosmetic surgery. We’re talking about those of us who’ve had reconstructive surgery post cancer.

A year and a half ago, I’d had some stomach fat lippo’d out and placed on top of my foobs to fill in the weird plastic gaps that were visible to the naked eye. Vein? Yes 100% and I won’t apologize for it. I was 5 years out, 2 babies out and just feeling good in my skin. I wanted to treat myself and help myself with the body issues I was feeling. So I won’t apologize.

While the surgery went well and the recovery was tough but unremarkable – a few months later I came down with this infection. It has to be attributable to the surgery b/c there’s literally nothing else that could’ve caused it. Sure it’s rare to have an infection 4 months post op — but it’s me we’re talking about – so all bets are off! haha!

No, but in all seriousness, this is exactly what the recall is for. The implants I have – have a textured, bumpy outside shell. Those small divets and bumps are the perfect breeding ground for bacteria to latch onto. During the fat grafting – bacteria was introduced into the pocket. It set up shop and turned into a full blown infection a few months later.

As you know, that particular foob issue was resolved with heavy doses of antibiotics. I didn’t need to remove the implant. Everyone (including me) felt happy about that outcome.

Fast forward to today – I’m feeling a crazy amount of swelling, tightness, thickness and other discomfort with my left (cancer side) foob. Who knows what the genesis may be (PTSD vs. something real?). But the most messed up thing is that I don’t want to know. I don’t want to stop my life and trajectory I’m on for a massive surgery and recovery. I just want to be normal. To feel normal.

But I guess that’s not in the cards for me. So in the coming days/weeks – I’ll reach out to my plastic surgeon and start the discussion of what’s next. I’m pretty sure it’s not lymphoma – but I’m pretty sure my body and mind are rejecting these implants. So I think I need to seriously consider my path if they need to come out.

Tomorrow I’ll call Dr Hong….

Also, if you made it this far in the post – prepare yourself for a reward of kiddo pics! You earned it!

 

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!…..