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.

Sick with Worry

This post will be a quickie.

Ever heard of the saying “Sick with worry?” Yeah? Well, me too. But, I’d never actually experienced ‘sick with worry’ until my diagnosis.  It’s terrible — horrible. Three words that seem totally innocuous.  However, when you are actually sick with worry, you will be on your ass. Or the bathroom floor, in my case. Just dry heaving and spinning. I’ve not figured out a real solution to this problem. Right now my best defense is Paul. I just let him rub my back until it’s over and then I hug him and cry into his t-shirt.

Sick with worry…. You’ve probably read those three words, and/or said them a million times in your life. I now know what it means and I hope none of you out there reading this ever experience this feeling.

Now, back to reality — get out there and VOTE, today is ELECTION DAY!

Medical Marijuana

I spent the day with Jackie N. (one of my former direct reports and, much more importantly, a very good friend) today. We started with brunch and then I intended to ditch her (sorry, but it’s true!) — but she was having none of it. I think she knew my plan was to feel sorry for myself and lay around the house — so she made a nuisance of herself and Thank God she did!

She helped me run a bunch of errands, including getting my medical marijuana card. Ummm, never, ever, ever thought I’d be typing those words in my life! lol

Laurie, a Bay Area Young Survivors (aka BAYS) member, told me about Compassionate Health Options here in the city on Howard and 8th.  She said that I should make an appointment with them, take any piece of paper that says I have cancer, and my driver’s licence — and voila — you get pot clearance!

So, I order up an Uber and off Jackie and I go! Upon arrival, it’s the usual intake forms — I’m very used to filling out forms at this point. My life and medical history are officially an open book. I complete the form in just a few minutes.  Then I meet with the first intake person and she takes my blood pressure and temp.

Next I’m shuffled over to the Pot Doctor, who asks me a few questions and takes my picture. The Pot Doctor is right out of central casting. She is a silver-haired, hip white woman.  She is wearing khaki’s and a vest. So SF! She has kind eyes and asks me sympathetic questions throughout the process.  No doubt she is utterly high the entire time!

Finally, I meet with a third intake person who prints out my pot card and gives me a map of local dispensaries (no joke, the website is — come on! For real? lol).

That’s it folks. No sunshine and rainbows. Just Jackie and I — and a bunch of really weird, gross San Francisco vagrants! Something tells me that not everyone in there actually had a medical reason to be there…. 😉

Total aside: Remember that Kelis song “My milkshake brings all the boys to the yard, and there like, is better than yours, damn right it’s better than yours, I could teach you, but I’d have to charge. Na, na, na naaaah, warm it up!?” (Kellen D. — I *know* you know this one b/c you always sing it under your breath at work! hahahaha) Well, for some odd reason, I sort of feel like ‘my marijuana card will bring all the boys to the yard’!!

Well, since I’m married, probably not “all the boys”, but at least my old burner friends……