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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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.