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.

I’m Nine Months Old Today!

Can you believe I’m 9 months old? Time flies! I’m speed crawling and pulling myself up on everything. I love hanging with my dog Maisey, she’s my best friend. I started a music with friends class and I LOVE it. Mommy got my ears pierced for me, I think I look adorable. Sadly, I still don’t have any teeth – so purees continue to be my jam. I’m starting to branch out a bit and expand my palate. I love spinach and potatoes AND lentils with rice (pureed, of course). I experiment with cantaloupe, strawberries, cucumbers, hummus, avocado and watermelon — but I don’t always like the feel of bits of food on my tongue.  It gives me the shivers!

HuffPo

My second piece is live on HuffPo, check it out!

http://www.huffingtonpost.com/andrea-ghoorah-sieminski/7-things-to-know-while-youre-undergoing-chemotherapy_b_7942272.html

xoxo,

Andrea

Nora’s betrothed

Hung out with Bish, Jamie, Mish, Rion and River today. Safe to say that River and Nora are going to be boyfriend and girlfriend…. 

  

Hairy Situation

Last weekend we flew to LA to celebrate the beautiful nuptials of Christine and Sharam. The wedding was incredible, and their love palpable. Mazel to you both!

At the wedding, I ran into some former Fenwick colleagues who I hadn’t seen in years.  It was extremely uncomfortable when they looked at me, looked at me some more, tipped their head to the side, focused their eyes, and said, “oh yeah —- Andrea, I almost didn’t recognize you! You used to have really long hair right? ”

Ugh.

Oh, my other favorite reminder of cancer is in the security line at the airport. The ID checking TSA guy says to me “Girl, you cut your hair off!”

Double ugh.

Obviously this has been happening to me a lot over the past 6 months. But my hair is finally to the point where it actually looks like maybe I meant to have this haircut. So people genuinely think I just cut my hair off.

Initially I struggled with these types of comments and didn’t know how to reply without making the other person feel uncomfortable.

Now, I’m an expert.  I just politely nod, smile and say, “Yes. Yes, that’s right. I used to have long hair.” Then I steal a sideways glance at Paul, or squeeze his hand, or feel his hand on the small of my back supporting me. And we all move on. Just like that. Nothing too painful.

It’s just so surreal and weird to me. I don’t know if what I’m currently doing is the right way to handle the situation. But it feels right to me at the moment. So, I’m going with it.

I will tell you this, though. Every single time I hear “oh, you used to have long hair”, I have a 10 second flash back of the entire last year and all the crapola I went through.

Somebody at work recently said/asked me “I mean, you reach an end point with cancer at some point, right?” (leaving aside how obviously rude and misinformed the question is), the true answer is that, no, you do not ever reach an end point. There are constant reminders — like when you run into old friends or colleagues and they don’t recognize you at first. It’s tough. Really tough.

Well, no time to dwell on any of this. Got to go wrap a million Xmas gifts so we can get them in the mail on Monday.

xoxo,
A

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Orange is the New Black

For those of you who are living under a rock. The new “it” show on Netflix is called “Orange is the New Black”. I started binge watching it earlier this week (ssshhh, don’t tell Paul, he’ll be pissed at me. Every time he asks what I’ve been doing during the day, I sigh and say “errands” — when he finds out I’ve been watching this without him, I”m gonna be in  trouble (Tootie-style from the Facts of Life, trouble!)!

So, I’ve learned (from this made for TV show) that prison is a lot like cancer. Your spouse, family and friends don’t really understand what you’re going through. You need to put on a stiff upper lip to get by.  You bond for life with your fellow inmates (err, cancer warriors). When you get out of prison (finish active treatment) everybody is sad to see you go, including yourself b/c you’ve built great bonds with your cancer community, doctors and other survivors — prison/cancer-world has become your norm — your best friends — so to leave that world feels disconcerting. Prison and cancer both rob you of your basics — without you getting a say — yet, you learn to adapt. Survive. Thrive.

Finally, prison, like cancer, will change you. For life. Hopefully for the better…..

Go watch this show and by the time you hit the episode entitled “F*cksgiving” — you’ll understand what I’m talking about.

Enjoy your weekend peeps!

xoxo

Tig Notaro

Pretty early on after my DX, Paul played me a recording of a stand-up comedian named Tig Notaro. Tig had just been diagnosed with stage 2 breast cancer and had a gig in LA. She took to the stage and didn’t know what was going to happen next. She decided to throw out her regular set and ended up talking about her DX instead.  It was raw, funny, painfully uncomfortable and cathartic.

I highly recommend you download her performance and give it a listen. If you are battling cancer, it will make you laugh and cry and shake your head in agreement. If you are supporting someone who is battling, it will make you laugh and it will help you understand.

Below is a link to Tig on NPR talking about her experience. You can download the actual set, entitled “Tig Notaro – Live” on Amazon. Yes, you have to pay for it. Yes, it’s totally worth every penny.

PS – I should add that Tig is now NED (no evidence of disease), yay!

http://www.npr.org/2013/07/26/205540155/tig-notaro-on-going-live-about-her-life

Milestones

Well, I feel like I can finally exhale. I had my swap out surgery earlier this week, and am on the mend from it. For me, the swap out truly signified the beginning of the end of this journey for me. I can stop waiting for the other shoe to drop. I can start to rebuild my strength and life! Words cannot express the sense of relief I feel right now.

My chest is pretty soar and swollen at the moment, so I don’t really know what my new rack looks like. I have to wear a big, supportive post-surgical bra for the next three weeks. Only time I can take it off is to shower and launder it. But, that’s fine by me. I’d rather follow instructions than risk having one of the implants float or twist into a funny position. So, for the near future, I will be sleeping a propped up on my back (no side or stomach sleeping for me).

Dr. Hong did quite a bit of liposuction around both of my armpits as well as my side boob. The tissue expanders caused a lump to form near my armpit (ladies, you know what I’m talking about — the armpit flab!). The expanders also caused a pretty sever fold of skin along the side of my boob. As a result, I am pretty soar and swollen from all the lipo. I haven’t noticed any significant bruising yet, but then again, I always have my surgical bra on — so who really knows what’s going on under there. The front of my right breast is pretty ache-y. I can feel the outline of the gummy implant a bit. But I’m sure that’ll settle in soon enough.

For any of you reading this out there who still are living with your tissue expanders, take it from me, the day WILL come when those pieces of cr** will be removed. Those hard edges that poke at you 24/7 will be replaced by soft. mushy material. I lived with my expanders for 8 months. 8 months! It felt like a lifetime. But the day came and they are gone! I can’t tell you how happy it makes me to write this post!

It is going to be a banner weekend here in SF. Not only does Pride weekend kick off this afternoon (on the heels of the SCOTUS rulings earlier this week) at 3pm at Dolores Park (which is just a few blocks from our house), but we are throwing my “I kicked cancer’s a**” party on Saturday. I can’t wait to gather with my friends and family and celebrate.

I can’t wait to reminisce about how damn far I’ve come in the past 9 months and how much further I’m still going to go. Nothing is going to stop me!

In My Ear

We are off to my swap out surgery in a few hours. Thought I’d share my cancer soundtrack with you. No need to get all deep and try to analyze the meaning behind the songs — I just like these songs. Nothing more to it! See you on the other side. Much love, A

Tomorrow Comes – Edie Brickell
Afternoons and Coffeespoons – Crash Test Dummies
Swimming in Your Ocean – Crash Test Dummies
American Honey – Lady Antebellum
Put Your Records On – Corrinne Bailey Rae
Better in Time – Leona Lewis
Come Back Song – Darius Rucker
Come Away With Me – Norah Jones
Sunrise – Norah Jones
Le Femme Accident – Orchestral Manoeuvres in the Dark
Glitter in the Air – Pink
Lost Without U – Robin Thicke
Suds in the Bucket – Sarah Evans
The Sounds of Silence – Simon and Garfunkel
Scarborough Fair – Simon and Garfunkel
Bridge Over Troubled Water – Simon and Garfunkel
The Only Living Boy in New York – Simon and Garfunkel
Many Rivers to Cross – UB40
Toes – Zac Brown Band
Mrs. Potters Lullaby – Counting Crows
Strawberry Wine – Deana Carter
Not Ready to Make Nice – Dixie Chicks
Wanted – Hunter Hayes
Dog Days are Over – Florence + the Machine
Marry You – Bruno Mars
Locked out of Heaven – Bruno Mars
Call Me Maybe – Carly Rae Jepson
Halo – Beyonce
Somewhere Over the Rainbow – Iz
Say – John Mayer
Right to be Wrong – Joss Stone
Beloved Wife – Natalie Merchant
I Will Wait – Mumford and Sons
Ho Hey – Lumineers
Into the Wild – LP
She Moves Me – Paul Simon
Diamonds on the Soles of Her Feet – Paul Simon
Kiss of Life – Sade
I Couldn’t Love you More- Sade
Love is Stronger Than Pride – Sade
Hallelujah – Jeff Buckley
Hold Me Now – Thompson Twins
Home – Phillip Phillips
Stay – Rihanna
Try – Pink
Starships – Nikki Minaj
Just the Way You Are – Diana Krall
Firework – Katy Perry
Party in the USA – Miley Cyrus
Suit & Tie – JT & Jay Z
I’m Yours – Jason Mraz
Can’t do it Alone – Chris Williams
Would I Know – Chris Williams
And a TON of George Winston (too many to list out!)

Pre-Op Day

We are heading down to PAMF in about 30 minutes for my surgical pre-op appointment. Tomorrow I go under the knife yet again. This time I’ll be having my tissue expanders swapped out for permanent implants.

I’m not going to lie to you — I have been really, really nervous about this surgery for the past week or so.  I’ve been feeling sick and want to be sure I’m going into this operation with as much health and strength as I can muster.  Obviously, when I had my bi-lateral, I hadn’t just endured 6 months of grueling chemo. So I felt pretty confident about my recovery.

This time around, my body is so weakened from the chemo.  Case in point is this damn virus I’ve been fighting for over a week. At first we just thought it was a cold. Then when I saw Garrett, he put me on strong antibiotics to get me as healthy as possible before surgery.  Only problem was — 4 days into the antibiotic course, I felt even worse.  My bones ached more than ever, the muscles in my arms felt like I had bench pressed 500 pounds, my entire body was itchy and swelling up (I had to take off my wedding rings b/c they were so tight), I had sever GI issues and was throwing up for a couple days straight. NOT FUN. (Here’s something to ponder: I wonder how much of my illness was actually nerves about the surgery versus true virus….)

We decided to switch me over to tylenol, benadryl and gas x (yup, gas x!).  After another few days — I’m starting to feel human again! But now I’m even more scared about this surgery. I feel like I just went through hell — how can I put my body through even more trauma?

I’m actually really looking forward to seeing Dr. Hong today. I know he’ll be able to put my mind at ease and get me to relax leading up to this surgery. I also know that if, for some reason, it’s unsafe to perform the surgery, he’ll reschedule me (I hope it doesn’t come to this though b/c I HATE my tissue expanders and want them out).

Alrighty, well we have to run. I’ll update you on next steps later today!

xo