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

#TBT – Full Circle

Throw back Thursday — I wrote this piece when we were on vacation last month:
Here I am, once again, blogging by the pool on the magical island of Kauai.  My absolute favorite place on this earth.  We came here on our “cancermoon” in 2012 to center ourselves before my surgery and chemo.  The island worked its magic and we got back to San Francisco ready to face my cancer head on.
We were also here on Kauai that dreaded day when Dr. Smith called to tell us that IVF didn’t work.  Earlier today we walked by the store and bench we sat on in Hanalei when the sad news was delivered to us. We got a little emo remembering that day – then looked down at Nora in her stroller and felt like we won the lottery!
This trip, we’ve come full circle.  It’s been 2 years since I finished treatment, I have a full head of hair again and my beautiful, perfect daughter is here with us (only piece missing is crazy Maisey).
It feels so nice to be reclaiming those sad times and to *finally* rewrite our story.
But I can’t help but wonder and feel scared when Paul says things like “we have our whole lives to watch Nora grow and take her on adventures”.  Last night at dinner he said something along those lines again (a perfectly natural statement for any new parent to marvel about) and I quietly whispered “what if I don’t have my whole life to watch my baby girl grow and thrive?”  And told him that I feel scared and sad when he makes grand, long-term statements like that. I could see Paul processing my statement and; for the first time in a long time, he just sat quietly and looked at me with love. Normally he’s so quick to say “You’re fine now. And you’re going to be fine” but this time, he didn’t give me a canned answer. He just accepted my feelings and didn’t try to fix the situation or dismiss my fears. His eyes were sad, I could tell part of him wanted to be the cheerleader and dismiss my negative nelly thoughts — but I’m so glad he didn’t.  It was only a 2 minute exchange, but I felt closer to him than ever.  The reality is that I might get cancer again. or I might not.  That’s it. There’s nothing more to it. It may or may not happen. But having already been there, I really don’t want to go back.
I also think that all new parents feel a sense of mortality when they bring a baby into the word.  I think it’s natural to want to be there for your child no matter what and to wonder what would happen to your child if you weren’t there.  It’s scary to think about whether you’ve had a history of cancer or not.
I look forward to every milestone with my precious, gorgeous, smart Nora. But I don’t allow myself the luxury of looking too far into the future. I just enjoy every single moment of every single day with her and my wonderful husband. Life is damn good right this very second and I am so thrilled to be living it!
   

A Picture’s Worth a Thousand Words

Below are stills from our incredible vacation. I wish we were still in Kauai — it’s the most magical place on this earth (in my opinion). Can’t wait until we return…

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…. 

  

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