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

Update!

As you know, I am all about posting the real-deal here. This is my personal experience with cancer. It’s not meant to instruct others on course of treatment etc. It’s just one girl’s story. If, however, I happen to help and/or inspire others to get out there and take action — well then I’m thrilled! I mention this because, recently, a fellow BC warrior posted excerpts of my blog for her friends and family to read (by all accounts the exercise has been very helpful for she and her loved ones — which is wonderful to hear — keep on fighting like heck and you will come through this with flying colors!).

However, one of her friends had some rather cutting things to say about my posts — and I was really, really upset by it. No matter what this particular woman might be going through in her life — to shit all over mine is not OK in my book. Below is what this person had to say:

[Dear friend who was newly diagnosed with cancer] Though the blog lady is clever and direct I think she is wrong in this respect—she is dwelling on some things that can easily- maybe not very easily- be ignored.

For example, my brother-in-law who has been bald for 50 years said- ” wear a hat or don’t bend under the cabinets cause it will hurt if you bump yourself.” So, slow down and don’t go smacking into furniture like the blogger with the refrigerator door.

Also, look to the goal. You will get your hair and boobs back and they will be cancer free.

I wish you an easy time through all of these tests and procedures. You are a strong and determined lady. My prayers and good wishes for a quick and complete recovery are being sent your way,

Life will get back to normal–really. xoxo, [E.L.][Full Name extracted]

My retorts to this person are (1) read my blog from beginning to end before you pass judgement, (2) try and be supportive of your friend and leave me and my journey out of it and (3) focus on the good in your heart and give your friend that energy, rather than looking for other people to tear down. You will fare much better in life if you take this approach.

OK, now that that diatribe is out of the way, I can update you all on this crazy week!

As you know, Tuesday morning we went over to UCSF to have my port inserted. G had called in a favor with one of his buddies (Dr. Jeff Pearl) and asked that he oversee my placement. Dr. Pearl did oversee the work, but Dr. Aggarwal (my Desi peeps!) actually placed the port. Dr. Aggarwal reminded me of my cousins Neal, Ravi and Niraj all rolled into one. He was WAY too young to be performing anything in a hospital (Neal & Ravi) and, like Niraj he had a really easy, yet dry and sardonic sense of humor about him.  Even when I was splayed out on the table, bits showing for all to see, he made me laugh and set me at ease! Also, it was super strange that he looked like Nir’s doopleganger!

As someone who normally trudges all the way down to PAMF for procedures, to be able to get to UCSF here in the city held its pro’s and con’s — while we avoided the 1.5-2 round trip drive down to PAMF, we lost equally as much time waiting around at UCSF. When we first arrived to have my blood work drawn, they had no idea who I was or why I was there. I had to bust out all my info from G to help them get the orders called. So back to the waiting room until the orders came through. Then we got lost on our way to the port placement office. We ended up in the chemo room. So, after asking for a few more directions, we were on our way! We checked in and, to be truthful, we were about an hour early (because they scheduled my blood draw for so early). So we just sat and sat and sat. I have to say UCSF is very busy. Maybe PAMF is as well, but it’s just less obvious and the nurses and coordinators are a bit more friendly. Who knows, I’m probably biased at this point! We eventually got called in to meet with Dr. Aggarwal who went over the procedure with us in detail. He said he might do a different sort of entrance for me because my spacers are still quite high after my bi-lateral — but he’ll consult with Dr. Pearl. While I haven’t inspected the site since it’s still bandaged, I do think he ultimately ended up threading the port above my spacers and even above my collar bone (G looked at it yesterday and said it looks beautiful and the stitching is masterful!).

Next, Paul is ushered out of the room and I am left to wait alone. Eventually I go to a women’s changing room and change into my robe, lock all my personal belonging into a small locker and head into the recovery room — which is pretty full, so they just sit me in a corner in a chair while the work on discharging the other people and freeing up a bed. After another 20 minutes or so of just sitting, I get moved to a bed and have an IV placed in my left (surgical) arm. This IV will administer my “twilight” anesthesia for the procedure (they don’t put you fully under for a port).

I wait some more and then the surgery nurse come to get me. I like her right off the bat. She is right out of central casting and exactly what I needed in that moment. I finally felt like I could breathe and was in good, un-rushed hands. The set up in the operating room actually takes about 20-30 minutes. They moved me to the operating table, hooked up all the vital sign patches, cleaned and sterilized the surgery site, then covered and taped it up to keep it clean,. Then they draped my entire body in a giant plastic bag. It was super claustrophobic at first. But they eventually opened a little side “window” on my left so I could look out of it and not feel buried alive.

For the procedure itself, which took about 30 minutes. I had to twist my neck to the left so that the doctor could easily access my neck and veins. The twilight worked well, all I felt was tugging and pulling. Then it was done. I was sent off to recovery for 30 minutes. The doctor checked in with me and said all went well. The discharge nurse had more distressing news for me. I was not prepared for this at all. I can’t shower or get the surgical site wet, can’t lift more than 5 pounds and can’t fully extend my arm above my head (all for 5 days). That means sponge baths and no PT this week. That is worse than after my bi-lateral. I was in the shower within 24 hours of that beast of a surgery. Ugh. I’m usually so good about rolling with the punches — but I need to be mentally prepared for them in order to steel myself against them!

Look, I know it’s not that big a deal and your probably thinking that to yourself right now. Trust me, I say it in my own head “Andrea, come on! If this is the biggest of your issues, you got it good. Snap out of it!” But on that day, after my pain meds wore off, and I could feel that somebody had been cutting and digging inside my cheat very close to my heart — I lost it. I did. Throughout this whole ordeal, I’ve held it together fairly well. But on Tuesday I cried more than I’ve known myself to cry to date. I was just in so much pain and it was so unexpected. Everybody told me a port is so routine — it’s like going to the dentist. Well, it was a bit more involved than that for me!

Fortunately, we had lots of extra vicodin on hand, so Paul just got me on a regular schedule of those and helped make me feel as comfortable as he possibly could. By the next morning, I was feeling a lot better. It’s true, tomorrow is a new day and things will almost certainly look better then!

We had no time to waste, the next morning we were due at Garrett’s for my fourth and FINAL AC infusion! I arrived an hour early to get a massage with Lisa. It was wonderful. She was able to work around my port site without incident and I left the room feeling relaxed and ready to take on chemo.

My white blood cell count came back elevated — which means no neulasta shot this week. THANK THE LORD. I did, however, have my high-dose Lupron shot done yesterday (remember, we are doing this shot to help quiet my ovaries during chemo). The worst side effects of Lupron are constant headache and hot-flashes. But I suspect chemo is giving me those same things with equal fervor! So, I just deal!

So here’s the bit most of you have been waiting with bated breath for … the port rocked! Administering 4 various IV bags (Zophran, Emend, Cytoxan mixed with Saline and just straight Saline) was a breeze. Tasha did extract any extra air that may have accumulated in-between each bag — btw that’s just because she’s super anal retentive — which I LOVE and admire about her! Air bubbles close to the heart scare me as well, so suck those babies out as often as you please!

Garrett pushed the dreaded red devil without incident — though we both admitted we were slightly on edge. How could we not be after the last time. So happy to report it was a breeze!

After all that was done, Tasha did a blood draw right from my port and then flushed it with Heperin (?) two times. She did this to be sure the veins and tubing don’t get clogged.

The infusion room was really busy yesterday so had lots of folks to visit with. Some we’ve met before others were new. We had a great time exchanging stories and hammin’ it up. One couple brought their puppy, Henry, in for a visit and Garrett rolled around on the floor with him. See, I told you, it’s like one giant family at my Oncologist’s!

After Garrett finished pushing the A the whole room clapped and hooted and hollered for me. I cannot BELIEVE this portion of the shitty programming is finally behind me! YAY! Such a great milestone to celebrate with a room full of people! So moving!

I did a little look back, and I am in week 16 or month 4 of this journey (I count from diagnosis and include surgery and recovery time from the same). I have the rest of this week and next week off, then I start 12 weeks worth of weekly T infusions. 3.5 months still sounds like a lot to go to me — but I’m sure it will fly by.

Alrighty, we are supposed to have two beautiful days of weather here in SF — it might even get into the 70’s. Today is my last “good” day before I potentially go down for the count from this last infusion. So I am going to attempt to wash myself and head out and run errands for the day. I think I deserve a little retail therapy today!

xoxo

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A Post dedicated to my Friend, Ami Weghorst Dodson

PS – I also wrote this one while drunk last night. What? Don’t you dare judge me. Wine is my friend right now. We all cope in different ways. Enjoy:

Ami you are my angel and my inspiration.

Where to even start?

When my very good friend Ami (who I refer to by her middle name, Aviva (so beautiful, right?)) was diagnosed with the big C a few months after my wedding  in 2009 (BTW – she was one of my bridesmaids, and Paul and I got married in the Catholic church (we had to tell a fib to the priest b/c we also had a separate Hindu wedding) — Ami was such a trooper for me.  You see, she is like a *serious* Jew.  I mean — like Super Jew.  Pretty sure she leads Shabbat (sp) prayer for her Synagogue (which I’m told is a very BIG deal).  So, understandably, she was totally freaked that she had to stand in the middle of a Catholic church to witness our vows — but she did it and was a champ about the whole thing.  Though she sort of got pushed over the edge when our wedding planer told all my bridesmaids to genuflect at the entrance to the church, before proceeding down the aisle. Ami reached the end of her tolerance rope!  Never one to mince words….well, I needn’t elaborate here! I made it clear to ALL, that nobody had to genuflect!)

Ami is a breast cancer survivor. Her road has been a long one, and I’ve followed her, nee, ADMIRED her the entire way. She had a bilateral mastectomy, full lymph node removal on one side, chemo and is now on hormone therapy. She also is fighting through the yucka issue of Lymphodema.

Before my cancer diagnosis, Ami was already my hero. I was so thrilled when she and her husband, Scott, and their two beautiful children moved out here to the Bay Area.  You see, Ami has known about my fertility struggles from the start. She was one of my rocks. Her dad is an OB-GYN and one of the handful of other doctors I consulted during our fertility journey.

In addition, Ami is a F’ing saint (did I fail to mention that part before). Before her big C diagnosis, she was just about to become a gestational surrogate for a gay couple. Her cancer diagnosis took her out of the running to do that. She was devastated.

So not only does she get our fertility struggles — b/c she’s been in the loop from very early on. But she also fully understands the utter sorrow I’m feeling for having to cancel my donor cycle TWO WEEKS before the finish line. SO DEVASTATING.

Ami has been such a rock for us. She has counseled me through all of this. Told me about chemo cocktails, key words to listen for. So much valuable information. I would die without her. It’s wonderful that I have so many friends and family who are doctors. They all have their opinions and POV, but being able to talk to Ami is invaluable.  She is someone who is not only incredibly smart — but who has also been there, done this — she walked the walk and can talk the talk. She has been my lighthouse in the storm.

Not to mention, those of you who know Ami know she is a no bullshit type of gal. Because of her, I 100% understand what a complete shitshow I am up against for the next 6-8-12 months. But I would rather know the truth and prepare for it, than to be bowled over and on my ass because I had no idea.

THANK YOU AMI. Words cannot convey how much you have helped me. I LOVE YOU AND I THANK YOU.