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!

“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….

 

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!…..

 

Janet

It’s hard to believe I was just sitting with you on your couch 72 hours ago. Talking about deep and heavy things, as well as perfectly mundane stuff.  You taught me so, so much. In the way that you lived and the way that you died.

Your memory is a blessing. I’m privileged to have known you. May you rest in peace.

In a Hurry
Janet S.
I want to see, touch, do, taste, smell, feel everything. I want to go everywhere, walk the earth, climb the mountains and snowboard down. Try everything at least once.
Lots to do, I’m in a hurry. Not much time left. How long do I have before the cancer makes it impossible? Narrows the world to just my room, my doctor’s office, the hospital? I don’t know, I can’t know.
Time wasted planning for a future I don’t have. Working to save for a family I will never have. No more, I’m here now to experience everything. To dance and sing and laugh around the world and at home.
But, I can’t do it all. No lifetime is enough to experience everything. To watch the sunrise from space.
I will see, touch, do, taste, smell, feel everything I can. In my lifetime, however long or short it may be. And it will be enough.

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7 Things to Know Before Starting Chemotherapy

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When I was diagnosed with breast cancer in October, 2012 at the age of 37, my world was turned upside down. My particular flavor of cancer was stage 1, grade 3, triple negative infiltrating ductal carcinoma. That’s a mouthful huh? I had my bi-lateral mastectomy performed and one month later I began 6 months of ACT (Adriamycin, Cytoxan, and Taxol) chemotherapy.

While I can’t guarantee that your road will be without bumps, in fact, I can almost assure you that there will be bumps, I can offer you some insights that helped me along the way. So, buckle up and hold on tight, you can do this.

Good luck to you my friend. I’m sending you love and strength.

1. Get a temporary handicap placard

Cancer is a full-time job with a million and one doctor’s appointments. Do yourself a favor and sign up for this with your local DMV. Most states let you do it online. Be warned, it can take a few weeks to process and receive the darn thing, so put this one near the top of your list if you can. Trust me, you will be overjoyed when you easily locate a spot by the front door of your destination.

2. Discuss you fertility preservation options

I’m always amazed at how many women and men aren’t told about the effects that chemo can have on your ability to conceive.  If your team of doctors hasn’t discussed this with you, make them.  Ask questions and demand answers.  Since we haven’t yet figured out how to turn back time, I don’t want you to regret not knowing about this. Don’t let anyone pressure you one way or the other on this front. Do what feels right for you.

3. Start a Blog or CaringBridge site so you don’t have to answer the same questions again and again

When a medical event like cancer happens to you, everybody wants to know what’s going on. It’ll become difficult to talk to every single person who cares about you, so use social media to keep everyone in the loop.

The crazy thing is social media will ultimately keep your spirits up. Your friends and family, far and wide, will rally around you. You can read their notes and comments when you’re feeling down.

You can also use your blog to ask for help. Everything from food delivery, babysitting, carpooling, errand running or just having someone stop by to sit with you, You name it, they’ll do it. I promise you.  People are good, and they desperately want to be of service, so let them, because they love you and want to help you.  P.S. I assure you that they don’t think you’re a burden (I know your mind was drifting there, so let me stop it for you).

4. Join a support group

Nothing makes the shitty cancer journey more bearable then a bunch of crazy, been-there-done-that like-minded individuals. It’s been my experience that my support group friends have become my family. They party the hardest, love the strongest and know exactly where I’m coming from.

We talk about our experiences but are very respectful of the fact that no two individual’s cancers are the same, even though the diagnosis might be very similar. Everyone’s journey is intensely personal. Surgical and treatment decisions are yours to make alone, but your support group will be a wonderful, and helpful sounding board for you.

If you are like me and were diagnosed at a young age, check out the young survivor groups in your town and nationally.

5. Have a plan for your hair

If you have small children you may opt to get a wig for continuity’s sake.  Or you may opt to rock the bald look like I did.  You may even be going to cold cap route.  All of these options require advance planning and lots of mental preparation.

My plan was to cut my hair into a short bob and donate my ponytail to love for locks at the very start of chemo.  Two weeks later when, when it started to fall out, I buzzed it close to my scalp.  A few days later, when those tiny hairs were raining down onto my floor, I lathered up and used a straight razor. Nothing can really prepare you for the hair loss part.  My husband tried to pump me up by playing the Demi Moore video from GI Jane. If I’m being honest, the whole thing was really difficult for me though.

You will also want to have lots of cozy, soft head coverings at the ready. Most oncologists’ office will have a basket with tons of options that are free.  Take advantage — I got some of my cutest hats that way.

6. Get your medical marijuana card
This assumes you live in a state where this is possible. I never, in a million years, thought I’d be vaporizing in the middle of the day. But, heck, when you’re feeling as green as I was, you’ll do just about anything to make it go away.  Medical marijuana really helped me with nausea, pain relief and insomnia.

7. Ativan is your friend

Often times I was scared shitless that I got cancer and had to have a bilateral mastectomy and do chemo. When my mind raced and my thoughts backed me into a corner, Ativan really helped me settle down and face the next hurdle head on (albeit, bald!).

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I hope these tips and suggestions help you to prepare yourself in the days and weeks leading up to chemo.  Stay tuned for my second installment “7 Things to Know While You’re Undergoing Chemotherapy”.