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.

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

Breast v. Bottle

Guys! I can’t physically breastfeed so PLEASE, for the love of all things sacred, stop asking me about it!

Ever since I found out I’m pregnant — I joined a new club — the “mom-to-be” club. I’ve waited years to gain entrée into this one and am elated to finally be here! As I suspected, people crawl out of the woodwork to offer support, guidance and helpful tips. It’s incredible!

Most notably, however, is the ease with which people talk at you about breastfeeding. The conversation always starts from the assumption that you’ll be breastfeeding.  For the oodles of women out there who choose not to breastfeed for their own personal reasons, this is a terribly invasive and rude conversation.

For me, it’s just a kick in the gut.

Obviously perfect strangers that I meet now have no idea I had cancer.  All they know is that I have weird, short hair (what can I say? I’m in that awkward grow out stage right now!)

20140902-124635-45995478.jpg and I’m having a baby. Great! inevitably, the requisite baby small-talk commences: “OMG, congrats! Your bump is so cute! When are you due? Is it a boy or girl? How are you feeling?” Then comes the breastfeeding convo: “Are you going to breastfeed? It’s a total bitch – hands down, it’s the hardest thing about being a mom. Natural Resources, which is in your neighborhood, offers great classes on breastfeeding — they’re worth the money.”

Since they’re strangers, I politely explain to them that I can’t breastfeed because I had a bi-lateral mastectomy.  I give my 2 minute cancer bio and that usually quiets the conversation. Only the most special people like to return to the topic 5 minutes later. It’s usually in the form of “Well, since you’re not breastfeeding, your boobs are going to KILL after the milk comes in and you have to let them dry up.”  Ummmm, no they won’t. I’m not sure how many ways I can tell you this — but while my breasts are anatomically stunning (!) and easy on the eyes, they’re 100% silicone.

It’s shocking to me how many people who are fully aware that I had breast cancer and a bi-lateral mastectomy STILL mention nursing to me! OH EM GEE, for real? This includes family members and fellow BAYS (my breast cancer support group) friends.  As for my BAYS ladies, there are many paths to treatment for cancer. Some of my BAYS friends had lumpectomies, or single mastectomies and the possibility of breastfeeding still exists for them. Some breastfed their children before being diagnosed, so they don’t stop to think about having a baby post DX. But still, I expect more from this group of people.

Now that I’m showing, these conversations happen pretty frequently. I’ve heard a lot of silly things come out of people’s mouths. But this next one is by far my favorite: “There’s so much pressure to breastfeed, it’s like you’re a monster if you don’t want to do it — you’re so lucky, at least you don’t have to choose whether or not to do it — the decision’s been made for you — AND nobody can give you grief about it because you don’t have boobs” WTF? That one is up there with my favorite breast cancer insult “Well, at least you got the easy cancer.” Not comforting people, not comforting.

Here are my conclusions:

1. People are so damned excited about a brand new life entering the world, they get amnesia about any and all sickness you had in the past.  Essentially, babies are blinding! (This helps me explain away close friends and even family members who talk to me about breastfeeding.)

and

2. People don’t really understand what a bi-lateral mastectomy entails. Little refresher for you – all of your breast tissue is removed in surgery. You are left with skin, pectoral muscle, anatomically shaped implants and rib cage. In that order. I assure you, there’s no breast tissue. No milk ducts. Nope, no possibility of milk comin’ outta there.

In all, it just sort of sucks to be reminded so frequently that I had breast cancer because it makes me think about the limitations I’ll face after giving birth. It makes me sad that I don’t have a choice in whether or not I nurse our baby. I’m also really sad that my chest is still pretty numb, the skin on my chest is cool to the touch (silicone implants aren’t a great heat conductor) and my implants are pretty hard. I wish I could give our daughter a nice warm, squishy landing pad to snuggle up to (and that I’d be able to physically feel her laying on my chest). But I can’t, and that’s sad to me.

If there’s one lesson I want you to take away with you from this post, it’s this: the breast v bottle conversation is as taboo as asking someone who they’re going to vote for. It’s really not your business, so please don’t go there.

 

 

 

 

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

Supreme Court & Myriad Ruling

The Supreme Court unanimously ruled Thursday that genes that occur naturally in the body cannot be patented. This means that Myriad’s expensive stronghold on the diagnostic BRCA gene test is over.  Myriad can no longer file patent infringement suits against other companies who perform the BRCA screening test. Which means the cost of the test will likely come down since Myriad will no longer hold a monopoly on it. Yay!

NY TIMES: The central question for the justices in the case, Association for Molecular Pathology v. Myriad Genetics, No. 12-398, was whether isolated genes are “products of nature” that may not be patented or “human-made inventions” eligible for patent protection.

Myriad’s discovery of the precise location and sequence of the genes at issue, BRCA1 and BRCA2, did not qualify, Justice Clarence Thomas wrote for the court. “A naturally occurring DNA segment is a product of nature and not patent eligible merely because it has been isolated,” he said. “It is undisputed that Myriad did not create or alter any of the genetic information encoded in the BRCA1 and BRCA2 genes.”

“Groundbreaking, innovative or even brilliant discovery does not by itself satisfy the criteria” for patent eligibility, he said.

IBT: Today, the court struck down a major barrier to patient care and medical innovation,” Sandra Park, an American Civil Liberties Union senior staff attorney, said in a statement. “Myriad did not invent the BRCA genes and should not control them. Because of this ruling, patients will have greater access to genetic testing and scientists can engage in research on these genes without fear of being sued.

YAY!!!! So happy to hear this news!

Wonder if my Myriad bill for $4100 (I was told the test costs $7000, my insurance would pay the bulk and I had to cover $700, yet I got a bill for $4100) from last November will finally be processed correctly — and maybe for less? A girl can hope!

Last Chemo – Recap

Hi everyone! We’re back from our two week escape post-chemo.  I wrote a few blog entries while in Hawaii but didn’t feel like editing and posting them. So keep in mind that the next few entries were written a few weeks ago.  Once I get all of these up I’ll start posting real-time again. xoxo

Here I am — one week out since my last chemo. I’ve had a lot of firsts and milestones to acknowledge (maybe not celebrate).

At my last chemo, I woke up like I did on any other given chemo Tuesday. With a deep sadness and tears welled in my eyes.  As always, I looked over to Paul and said, once again, “I can’t possibly do it again. I don’t want to do it again”.  Ever the supportive husband, he kissed me and said, “You can do this. This is the very last time you will have to do this. Ever.”

My final chemo was bittersweet. I hadn’t had a massage prior to my last 3 chemo’s because Lisa was enjoying a well-deserved vacation. So, this, my final chemo, started with a relaxing, lovely massage. Then, off I went to Jelly for blood work and Garrett for my final consult before my final Benadryl nap. What’s crazy is that it was all sort of sad and anticlimactic at the same time. I felt that I was losing a HUGE chunk of my life and my new cancer family, yet I was gaining my independence again (whatever that means).

I’m proud to say that Garrett and his team asked me to be one of the new faces of his practice (my pic and bio will appear on his website). It just so happens, that the professional photographer for their website was coming in on my last infusion day. So it was a BIG day. Can’t you just picture it, I’m totally zonked from a massage and Benadryl. I wake up and try to re-apply my make-up and sit for a photo shoot! Ha! I was a hot mess. I planned my outfit very strategically so that I had three separate looks for the photographer. Sadly, I was in such a daze — it was all I could do to let her just take my picture — forget about transitioning looks! End of day, I was wearing my Stella & Dot breast cancer awareness scarf in the photo. I’m happy about that because I was wearing it the day of my mammogram when this entire journey began. It felt fitting to wear it as chemo came to a close.

The entire day was surreal. I don’t think there were any other patients in the infusion room that day. So it was really quiet in the office. Paul and Tasha did a lot of hootin’ and hollerin’ as the very last drops of Taxol dripped into my veins (See Paul’s blog post — I am super out of it, it’s pretty hilarious!).  Then, during my photo shoot, everybody sort of came out of the wood works to congratulate, high five and hug me.

My clearest memory from the photo shoot was of Lisa literally screaming at me “You’re done!” and DAMN, that felt F’ing good! I know she was partly trying to get me to loosen up in front of the camera — but it was all so bittersweet to me — every single day since last December, I’ve counted on Smith Integrative Oncology — the entire team, to help me get by. Everything from a paper cut (which is actually no joke when you’re undergoing chemo) — to my 10 day hospital stay. They’ve been there for me. Through think and thin. My new family.

Now, our regular dates are done. I’m happy to break up with them on the one hand, but I’m sad to know that I won’t see all of these wonderful people on a regular basis.  They saved me. Together with Paul, all of these people saved me.  They made me find the strength to go on when I had no idea that any strength was left. They made me want to put on a cute outfit and pair it with some cute Stella & Dot each infusion day so that I could make them smile.

All I can say to SIO, Paul, and all of you who have supported me along this road, is a heartfelt THANK YOU. I don’t know what else to say. I know my fight isn’t quite over yet, but you all carried me this far, and for that, you get a giant THANK YOU.

xoxo