10.11.17

As I sit here and type this, Doris Day’s Que Sera, Sera is replaying in my head over and over. I distinctly remember my mom singing that song to me (as I do for Nora & Peter) when I was a little girl. It’s always stuck with me and I feel like it’s been my anthem for life over the past few years.

Which brings me to the point of this post. It’s hard to believe that 10.11.12 was FIVE years ago. Que sera, sera. What will be, will be.

Thankfully, I’m happy to report that my latest test results indicate that I’m still NED (no evidence of disease). Wahoo! Happy 5-year cancerversary to me!

As most of you know, making it 5 years without a recurrence or distant metastasis for a triple negative-er is a really big deal. At this point (assuming the scientific literature out there is still accurate) my rate of recurrence drops significantly. Metastasis could still rear it’s ugly head one day, but I’ve learned to embrace the Que, Sera, Sera part of life!

Does this mean that I’ll rest on my laurels and go back to “normal” life? No my friends, there is no such thing as “normal” life anymore – just the new normal – which includes exercise (ugh.), self-care (read: switching to non-toxic make-up, personal care products, laundry detergent, household cleaning items, and trying to eat “clean” while balancing ALL of that against just living my life and enjoying myself!) and continued check ups with Garrett every 3 to 4 months.

But seriously, as shitty as things have been, they’ve been equally as amazing. I wouldn’t trade a thing about the past 5 years because I’ve grown so much as a person. Of course, I wouldn’t wish cancer on anybody, but for me, it was (and is) a profound experience. I’ve met so many beautiful souls along the way. Without my community, I wouldn’t be where I am today. So I thank all of you who have been there for me and my family — holding space for us and holding us in your hearts and prayers when we needed it most. I hope to return the favor as many times over as I can.

For now though, I’ll happily continue cruisin’ along in this lane. It’s not a bad lane to be in…

xoxo,
Andrea

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Photo Credit: Piece of Heart Photography

 

This one snuck up on me

Yesterday was my 4-year cancerversary. It snuck up on me for sure – but it’s not like I forgot about it. It’s always in the back of my mind. Happily though, Paul totally forgot about it. Which I’m fine with. It’s not a ‘versary I like to dwell on too much.

I spent a cozy, delicious day snuggled at home with Peter. I had plans to run an errand or two – but ended up nesting at home with my new little bug instead. It was heaven. Until the witching hour that is. Around dinnertime, literally, everybody in our house was grousing. Peter was crying for a feed, Nora was melting down after a long day at daycare, Maisey was plead-barking at the back door to be let out for a potty – and Paul and I were divided in separate rooms tending to the tiny humans. It was perfectly imperfect. I felt like crying, but chuckled in my head instead. I suppose these are life’s little moments!

Some updates for you on the cancer front:

Earlier this summer, I was accepted into a clinical trial for TNBC survivors. The trial is by Cynvenio and they believe that they can perform a biopsy on our blood to detect whether we’re having a recurrence up to 8 months before current tests could catch it. The trial is specifically for triple negative folks like myself. I don’t have to do a whole heck of a lot except give my blood 4 times a year. I thought I’d get kicked out of the trial b/c I missed the second draw due to bedrest with Peter. But they were cool about it and let me miss one draw and stay in the study.

One of these days when I have some time I’ll post more details about the trial itself. I’m sure you can google it if you’re really curious. Who knows if it actually can detect what it says it can — but that’s the point of the trial, right? I’m happy to participate and do my small part to help advance science.

I’ll leave you with some scrumptious pics of the kids and a hilarious video of Nora and Peter, enjoy!

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.

Hello, I Have Cancer….

I wrote this two years ago and just came across it in my draft posts. I added a little bit at the end to bring it up to date. Enjoy:

So I was watching the Tig Notaro Netflix documentary and I decided it was high time for me to write my own reflective story. So here goes:

Hello, I’m infertile.  I thought the very worst thing in my life was that I couldn’t get pregnant.  For years my husband and I tried. We tried the old fashioned way. We tried the least invasive way. We tried the middle of the road invasive way We tried the most invasive way, multiple times over. Yet no pregnancy and no baby.  I wept and I wept every single month that we failed to get pregnant. And I say “we” loosely.  When you struggle with infertility, it quickly becomes an “I” game, not a “we” game. I had to do all the shots, I had to take all the hormones I had to check my underwear everys single time I went to the bathroom praying that my period wouldn’t show her nasty face. Sure, my husband was also infertile in a way — but he wasn’t physically going through anything. It was all on my shoulders and I was failing, miserably.

And after three years of infertility treatments, including 10 IUI’s with and without injectables and 4 IVF rounds including a few frozen embryo transfers, we still were without a child.

It was the worst kind of hell a person could be asked to live through.  I was working full-time at a very demanding start-up company.  I was juggling my personal hell with my professional goals.  It was horrible. I was miserable. I thought it was the very worst thing that could ever happen to me in my whole entire life. And then I was diagnosed with cancer.

If I could go back and whisper in my own ear, here’s what I would tell myself.

Andrea, hold tight to Paul even though you’re mad that he doesn’t feel “in the mood” and your ovulation window is closing. Hold tight to him because you can’t have a baby anyway. Hold tight to him and love him purely. You are about to find out that having a baby the old fashioned way isn’t an option for you. So hold on to this connection as long as you can. Nobody really talks about it, but having sex “on demand” is horrid — it can break a couple in half quickly. So hold tight to this loving man who appreciates you and your body, even though it hasn’t yielded a baby.

Andrea, you’re now 8 months into your fertility journey. Keep your head held high. You’re doing the right thing. It sucks to have to give yourself shots and that you cringe every time a friend posts her ultrasound to Facebook announcing her pregancy. Remember, she doesn’t know what you’re struggling with infertility because you’re intent on keeping it a secret from the world.

Andrea, why are you still keeping this a secret? It’s now been 3 years since you started this journey. your medical expenses have topped out over $100,000 and you’ve given yourself over 1,000 shots to the belly. Don’t you think it’s time to share this complete fucking hell with somebody?

Andrea, don’t you feel so much better now that you’ve told your family what you’ve been struggling with. Honestly, this has been the WORST thing imaginable. But it’s been really nice to have their support. You feel a new sense of energy and sticktuitivness, Ready to conquer the next hurdle.

Then you feel the lump. You talk to Paul about it but try to brush it off. You talk to your fertility nurse about it and try to brush it off.  Then the lump persists. You can’t ignore it. You go to the doctor and she fells it and orders some follow-up tests. Still, in your mind, you brush it off. What.could.be.worse.than.3.years.of.infertility?

Breast cancer.  It was laughable to me when it happened. Fucking hilarious. Seriously, for real?

After all that’d I’d been through, I got cancer. Wow.just.wow.

Andrea, just hold on a little while longer. 2 more years. You can do it. You can handle having your breasts amputated. You can handle surgical recovery. You can handle chemotherapy. You can handle your body being reduced to a lump of shit with no muscle definition or endurance. You can handle testing your marriage, yet again. You can handle it all.

Andrea, you can handle it all — but you will have your moments. You will have those times when you dont want to be the superhero. When you don’t want to smile through the tears. When you dont feel like asking another person how THEY feel. When you want to be selfish and cry. and weep. and weep. and weep. and wallow.

Andrea, your beloved dog will die unexpectedly just as you are feeling like yourself after chemo is finally done. This will knock you an on your ass. You will question everything that you thought you understood in this world. You will become angry. More angry than when you found out you had cancer, You will be sad. So sad. Sadder than when you couldn’t have a baby month after month after month.

You truly thought you’d been dealt the worst of the worst. First the infertilty, then the cancer, then your fucking dog died. What next? How much lower can you go?

Andrea, you will look up through your tear-drenched eyes and see the love that your husband has for you. You will realize he is all you need in this world. Baby, no baby. Dog, No dog, Cancer, no cancer. He is your salvation. Stop taking him for granted. He is incredible. Look no further. He’s been at your side the whole time. Quietly and not so quietly rooting for you. Whether you know it or not. He’s been your biggest fan.

Andrea, you’ll get the type of cancer that’s incerdibly aggressive — BUT it’s the kind with no aftercare for 10 years. You can hop yourself up full of hormoes and still carry a pregnancy.

Andrea, you will become pregnant and enjoy every single second of it, including the birth.

Andrea, all of your wishes and dreams WILL come true and you will be happier than you could’ve ever imganined. You will want to bottle the emotions because they’re like crack. You could make a fortune selling this feeling to other people.

You are one lucky son of a gun. What a long strange trip it’s been.

Post script – you get pregnant for a second time and almost lose the baby at 22 weeks. Life seems likes it’s at another all time low.

Andrea, hang in there. After an emergency surgery and nearly 8 weeks of hospital bedrest, you’ll get to go home and serve another 7 weeks of bedrest. But at the end of the day, you’ll get a second baby who is perfect.

In the end, you’ll end up with a daughter and a son. They are perfect in every way.

Andrea, your marriage is still intact and strong. Hopefully the shit show the past 7 years will become a distant memory very soon…..

xoxo.
Me

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.

 

 

 

 

The Cancer Booty Call

Uh huh. You read that right. The Cancer Booty Call. It really exists.

When I was first diagnosed, so many friends and family rallied around me, did their own research and scoured their social networks.  Many of you sent me private notes offering to introduce me to your mother, aunt, co-worker, or a friend similarly situated to me.  I read and re-read all of your offers and had to decide for myself if I wanted to reach out to a total stranger to talk about what was about to happen to me.

In the end, I took two of you up on your offers (thank you Bess and Katie). I ultimately decided that the people you were going to introduce me to were not really “strangers”, rather, they were just like me — and they’d already weathered the storm — so why not take their advice? They must’ve done something right, right?!!!

I placed those outgoing calls and am ever grateful I did.  Being able to talk to somebody who’d “been there, done that” helped give me perspective. Helped me to understand what was about to  happen. Helped me mentally prepare. Helped me realize that I will live and life will go on. They were living proof of that.

At this point, I’ve been on the receiving end of many a cancer booty call from you and/or your friends, moms, aunts, sisters, coworkers and college friends.  It saddens me to think how many of these calls I’ve had with you and your loved ones — cancer is just so stupid… and mean… and everywhere.  But, nothing makes me feel better, as a person and as a survivor, than to help your loved ones as they begin their own cancer battle.

It makes me happy to think that I am now the person that weathered the storm — someone out there weighs the pros and cons of talking to me, a quasi-stranger, and decides to go for it. I know it’s not an easy decision, or one that’s arrived at without much consideration. Just know that those of us on the receiving end of this particular booty call are flattered and happy to help in any way we can.

PS. My check-up with Garrett went well. My white blood cell count was elevated so I had to behave myself on our cross country flight to Andrew and Katherine’s wedding (and at the wedding itself). I don’t have my tumor marker results yet, so nothing to report on that front. Other than that, we talked a lot about the fact that my left implant (cancer and sentinel node removal side) pocket is stretching and my implant is sort of floating out toward my arm pit — leaving rippling and ribs exposed around my fake cleavage. I’ll have to talk to my plastic surgeon and physical therapist in greater detail about this as it’s not G’s forte. In the meantime, I’ve started wearing sports bras to try and keep the damn thing from drifting any further out of the pocket.

My Legacy

It’s been a long while since I’ve posted anything of substance.  I’ve not had much to say these days — so I went back into my archives and found this draft post — from October 21, 2013.  I’ve not edited it at all. I figured it was best to just post it — grammar/spelling warts and all. So here goes………….
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Lately, I’ve been thinking a lot about my legacy.

Legacy is defined as “something transmitted by or received from an ancestor or predecessor or from the past”.

For me, as you most of you know, at this point, it’s very unlikely that I’ll have my own biological children. If you’ve been following my blog, you know I’ve struggled with infertility and then cancer struck. After aggressive chemo nuked my entire body, including my ovaries, there’s little possibility that I can use my own eggs for a pregnancy. Hell, I’m still technically in menopause and have no clue if I’ll ever get my period back (TMI? Don’t read this blog then!).

But, all of that said, I still think about my legacy.  When Paul and I were picking our egg donor, her family health history was very important to us. We looked for red flags, like cancer, heart disease, metal instability etc. Obviously, you don’t WANT any of that if you can avoid it. Thankfully, our donor and her family, on paper, lacked those “bad” traits. Though I’m no dummy, that shit can hit her family tomorrow. I’m living proof of that.

Now, that the dust has settled with my own treatment, I realize that my own family will have to grapple with my diagnosis as it relates to themselves and their own families.  My thoughts immediately go to my brother Bob’s daughters.  Will my darling nieces have to get the BRCA gene test? Since I was BRCA negative, will that test and it’s results even be meaningful if they do have it? Will Bob and Sarah worry every day about their daughters’ susceptibility to cancer given that their paternal aunt got it?

I also think about my maternal cousins; but I’m less worried about them as they’re grown women who can make sound decisions for themselves. What about my first cousins’ children? I realize that’s a bit far removed, but I still think about it.

Finally, we all know that breast cancer doesn’t only impact women – men can get it too. For some reason, I feel cavalier on this front. I feel sure that no men in my family will be impacted. But that’s probably stupid of me. So to my brothers and my male cousins — FEEL YOUR BOOBIES. Sorry, it is what it is.

Ugh. I’ve been so busy thinking about me and getting through this ordeal. I didn’t stop to think what sort of reality and worry my DX may have wrought on my family and extended family.

My only hope is that this starts and ends with me. That my body simply went haywire and that’s the end of it.

Geez, reality does bite.