the shit nobody talks about… literally

One week post-surgery. I. Cannot. Believe it.

There’s so much you plan for. So much you expect to happen and brace yourself for.

Then there are the things that happen which totally throw you for a loop, but really shouldn’t, because I’m pretty sure they happen to everyone who has a double mastectomy. For some reason, nobody talks about them.

And those are the kinds of things I LOVE to talk about.

ignore me

I’ve been good about keeping my peeps informed with little updates day-to-day on social media. It’s clear I’m continuing to recover swiftly. My mind is set on it. I’m doing the things I want to do and being very careful not to do the things I still can’t… but every day gets better. You GOTTA keep moving. A body in motion stays in motion.

But social media can so awesomely distort reality if you’re clever, and we all know too many people take advantage of that.

perfect on facebook

I’m not about distorting anything. I’m about being real and throwin’ down some truth.

So here you go… get ready to laugh, and get ready to be informed. Here are the top things I learned over the last week that everyone preparing for a double mastectomy, or perhaps another major surgery on the upper body, needs to know (you’re welcome). I’ll start with the really good stuff first.

Drains
To be clear, everyone having a double mastectomy is prepared in advance that they will go home with drains. The type of procedure you’re having will dictate how many drains you get. Your physician should instruct you on how to care for the drains at home. You have to empty the fluid that the drains produce (blood and other nasty shit) and measure that fluid a few times a day. Once the output in a single drain is less than 30 CCs in a 24-hour span, the drain can come out. I left the hospital with four drains, two on either side of my torso. On Tuesday my plastic surgeon was able to take one drain out. Today I had another taken out. THANK F*CKING GOD. Drains are disgusting. The only people who disagree are nurses and family/friends who are lying because they don’t want to hurt my feelings. Sorry, it’s true… you be the judge.

(And an added bonus is that I cannot figure out how to adjust the static, ridiculous look on my face before you start this video. God and WordPress have the best senses of humor.)

On the real, you get used to the drains. They are very annoying, but probably wouldn’t be if you had full range of motion, which you won’t directly after surgery (keep moving). I have one drain underneath my right expander and it’s dancing on a nerve… certain moves make it feel like a hot poker is sticking me in the ribs. It’s excruciating, but there’s nothing I can do about it and luckily that doesn’t always happen. Your doctor will explain how to shower with them. They can get completely wet and my plastic surgeon gave me a belt to wear around my waist during the day/night with pouches for them, which was so helpful.

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too sexy for these drains

The drains are bulky, you see them underneath your clothes, so wear blousey stuff or if you’re fancy, shirts with ruffling on the bottom.

NEXT TOPIC… 

constipation

Here’s the thing… your doctors will tell you pain medication is binding. They might even tell you to start taking a stool softener a full week prior to surgery, which mine did (and I obliged). What they don’t necessarily tell you is that anesthesia puts your intestinal tract to sleep… FOR DAYS. I had 7 hours of anesthesia, which was 2-3 more hours than everyone originally estimated. Some mastectomies can take upwards of 12 or more hours (DIEP flap, latissimus dorsi flap). A small silver lining is, before surgery, your stomach is empty, and after surgery, you aren’t exactly shoveling food down your throat… that gives you SOME time for the anesthesia to leave your body, but that many hours can take a week or more. One particular nurse on Friday night asked me every hour if I’d “moved my bowels” and I nearly clocked her (Duane was ready to ask if she wanted to see his). Don’t talk to me about pooping when I’m still trying to learn how to PEE (it’s tough figuring out how to pee again, you really have to think about it).

So the whole “I can’t poop” thing got really old by Saturday night, which is when I started pulling out the big guns: extra stool softeners, prune juice, Miralax, all kinds of non-binding and fiberous foods (figs, fruit, veggies), COLONOSCOPY PREP, tons of water… none of it worked. No shit. I looked like I was 5 months pregnant and legit had more people than I’m proud to admit helping me and asking for updates (nothing is sacred, they were all genuinely routing for me). I eventually did something I can’t even bring myself to type, and it was like Moses parting the Red Sea.

I’d avoided my Percocet that day, so celebrated with wine. I earned that shit. It’s like when you have an infant and you pray for a poop.

finally pooped

If you think this is TMI, I hate to be the one to tell you, you’re the minority. The poop emoji isn’t one of the most popular for nothing. Welcome to 2015 where everybody poops (unless they just had a double mastectomy).

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eating shit in a fabulous tank top on Aug. 13, 2015

PILLOWS

THESE ARE SO IMPORTANT. Women will appreciate this, men will hate reading this truth. There’s a reason why women have thousands of pillows on their beds and around the house… it’s because one day, they might have a double mastectomy, or someone they know will, and women help other women by giving them all of their soft throw pillows. I took this picture when I slept at my best friend Melissa’s house in early July so that I could use it one day to tease her… she is the queen of too many pillows (they’re all fabulous). I’ll never tease her again. #TurnDownForWhat

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my friend Melissa loves throw pillows…

Post-surgery, it’s incredibly difficult to move. You feel pain across your chest and down your arms. You need pillows to prop you up from behind. You need smaller pillows to put underneath your arms while laying in bed or in a chair (you want your arms elevated, level with or slightly higher than your body). Even better, put a pillow under your knees (my best friend Colleen taught me that). On your way home from the hospital, you’ll NEED a pillow across your chest so the seat belt doesn’t smash your sore body, and smaller pillows by your sides so your elbows sit higher. Soft and smushy.

The hospital let me take as many of their smaller pillows as I wanted (ask them when you’re leaving). I’m still using them at home. They sent me home with this heart pillow too, made by local women, which I love.

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outta jail on Aug. 8, 2015!

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Prepare Your Hair

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I’m the animal in this picture… when you’re having a surgery that disables you from being able to lift your arms to wash your hair, brush it or put it up, you must prepare. Millions of people are going to want to visit you, they stop by unexpectedly, and you won’t want to look like Phil Spector. Trust me.

When I was in LA prior to surgery, my good friend Julz gave me a new, safer keratin treatment and it has literally saved my life… My hair air dries after the shower perfectly straight, no frizz. It’s worth the money to have this done. Here’s where I went. The pic below is from Monday (don’t judge the soap stains on the mirror, washing my face was still messy at that time).

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hair did on Aug. 9, 2015

Button-Down Shirts, Zip-Front Sports Bras, Loose Pants

If it’s not clear already, you can’t lift your arms after having a double mastectomy. Putting a shirt over your head is next to impossible. The hospital may put you in a disposable surgical bra, they may not. Regardless, you will need zip-front or button down clothing so you don’t have to worry about putting things over your head. Even if you have help, getting your arms through something that goes over your head is excruciating. I have a ton of sports bras that I brought with me… I was only able to use two because they were stretchy, spandex material (gotta be able to stretch over your shoulders, cotton will be too tight). There were still a few moments where tears (sobs) were shed putting clothes on overhead. If your doctor doesn’t give you a good bra, or if you just want more than one, most sporting goods stores carry zip-front sports bras. Try Sport’s Authority, Dicks or online at Target and Amazon. You’ll likely need a much larger size than you are used to because you’ll be swollen.

Don’t wear pants that are in any way tight around the waist or need even the slightest tugging to pull on and off. After surgery, you cannot push anything, pull anything, carry anything or use your arms to push yourself up out of bed. No opening doors, no leaning on someone to get up, no reaching for things up too high. Everything has to be done using your legs and your core (I can’t wait to weigh myself when all of this is done). When I ditched my hospital gown, I’d luckily brought with me this ridiculous zip-up shirt that I wore in college to attract boys (sans the bulky drains, it looked hot once… if this shirt could talk). The nurses and doctors loved it. I knew there was a reason I save everything I once owned, forever.

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rockin’ drains like a champ in the hospital on Aug. 7, 2015 #LaterHospitalGown

But the pants I brought, normal stretch cotton gym pants, were difficult to pull down and back up to pee, again, something so simple becoming so complicated. You also feel like a jerk asking for help in the bathroom each time. The nurses are of course there to help, but once you’re up and becoming a more self-sufficient, they aren’t running in to help; they’re busy with other sicker patients (some of whom are extremely old, maybe delusional and others who just give the nurses a hard time). JUST be prepared, drawstring PJ pants might have been better.

So those are the biggies, but there are so many more things I encourage…

  • Tell people what you want and be specific. Don’t just ask someone (nurse or otherwise) if they can do something that would be helpful to you, and don’t take no for an answer. If the initial answer is no, insist on an alternative solution to your problem, a compromise. If you don’t get anywhere with the nurse, politely ask to speak with the supervisor/head nurse. This is your show, and while it may sound ironic, YOU are the only one allowed to say, NO. And if something doesn’t feel right, say so.
  • Get your core strength up prior to surgery, you’ll need it.
  • Sleepover buddies are important. My first night I had a wonderful nurse who came in on a very regular basis, every time I needed her, and she was competent. She felt like my partner. I felt safe. The evening nurses Friday night, and even some of the nurse assistants in general, had less than stellar attitudes, or were just nervous to make decisions. You don’t need someone being less than confident or aggravating you. You need an advocate. If you have someone who’s willing to stay with you, take advantage. Just prepare them they might not get much sleep. You can repay them in treats that will flood your house upon returning home.

Much love, my people! ❤

nervous, numb and then some…

The roller coaster of emotions I’ve been on since June 1 is evident by the way my house looks right now (like a tornado came through), the piles of lists in every room, the started and unfinished “projects” and the amount of Xanax I’ve consumed. I have never freaked so much in my life. It almost feels manic, and that alone freaks me out. I’m normally very level-headed and precise, but I’m aware of coming unglued. It’s so weird.

I always bite off more than I can chew, and when I scheduled my surgery for Aug. 6, I knew there were specific things I needed to accomplish beforehand: make a reconstruction decision (top priority), get to Maine with my family (we’ve gone almost every summer since I was born) and get to LA to visit my brother and his family, to hug my beloved nephew Arrow and his new little sister Rio. Somehow, over the last two months, I did so much more than those three things. I’m proud that I did. I’m kind of shocked I did it, I have no idea HOW I did. But now, and as of Aug. 1, the lists have been checked off…  and there’s been nothing left to do but wait.

And think.

And worry.

And wonder.

And now surgery is here, and I cannot help but feel slightly terrified.

In early June, I woke up from a dream where I’d had my mastectomy, and I felt it… this hollow, empty, numbness where my breasts had been. This concavity, almost like my heart was gone too. No aching, no feeling at all. Just nothing. And I sobbed the whole day. What the hell is this going to feel like? The unknown is so scary.

I mentioned in my previous post that many women have been kind enough to sit with me, to lift their shirts, to let me REALLY look at their reconstruction, to feel them. Many of them said, very casually, “Sure go ahead, I don’t feel it anyway.” One woman actually said, “I’ll show anyone because I really don’t feel like their mine.” That comment in particular struck a chord. I would hate to think that after all of the work I’ve done to make the right reconstruction decision, they wouldn’t be “mine,” even if they feel like nothing.

No matter how tough you are when dealing with cancer, and overcoming it, there’s something very personal about what cancer robs you of. When I was a child, I had a head of long, blonde curls, from age 3. Goldilocks. Hair everyone talked about and wished they had.

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little Mary at my Auntie Di’s house, circa 1988 (age 6)

And when I had chemo, I had to watch it fall out slowly, as if in order to be cured, something has to die. When I couldn’t bear to watch it anymore, I asked my brother, a metal head, to shave my head… he couldn’t bring himself to do it. And so my poor mother had to. I put my head down over the sink and just sobbed. And it’s just hair, it grows back. To be honest, I loved being bald. When I was finally able to look at myself in the mirror, I felt relief. I never wore a wig and rocked a great shaved head. But in that moment, those few minutes with my mom and the buzzer, cancer won. Cancer stripped me of part of my physical identity. I think that moment was worse than the 9 weeks of chemo I had. Because it was heartbreaking.

And now as I sit here, and think about what it’s going to feel like to not have any feeling at all in my upper torso, I’m furious and devastated. I have no doubts my new boobs will look great. I’m sure I’ll love that they’ll never fall like my real boobs have already started to. They will look like mine. But that’s not what this is about… they won’t feel like anything. They won’t get in my way like they always do, I won’t notice them when I’m walking up stairs. I remember what my skin felt like after my biopsy as a teenager, and what my neck felt like after my thyroid was removed. It’s like when you go to the dentist and they shoot novacaine into your mouth and you play with your lips for hours afterward. Except that feeling never goes away.

I’ve been strong and positive up until this point, and I still am. I’m confident the surgery will go well. I’m blessed with thousands of friends, and friends of friends, who have come out of the woodwork to wish me well, pray for me and think of me surrounded in white light. I’m going to be just fine and I’m eternally grateful. But I think I deserve my moment to mourn my body. Like any other unknown, this one is terrifying.

We spend so much time focusing on our physical flaws and striving for perfection. You really don’t know what you have until it’s gone. Cancer taught me that a long time ago. Let this lesson be to love and honor yourself. Take care of the body you were given. Stop being your own worst critic. Stop criticizing and judging others’ appearances when you have no idea what they are struggling with. There are men and women who have lost limbs or who’ve become disfigured due to illness, accidents and combat. You should be so lucky you aren’t one of them.

mourn my boobs
#HOLLApalooza with my Golden Girls and besties @ The Jane Hotel, NYC, July 24, 2015

This will be my last post before surgery. THANK you for thinking of me, for reading my thoughts, for sharing them with others, for sharing your own with me. I’ve had my moments of weakness. This has been a big one I’ve carried for the last two months. I’m ready to let it go and focus on being brave (sing it Sara…)

See you on the other side of surgery ❤

deconstructing reconstruction… what a hot mess

Big holla back to the creators and supporters of the pink ribbon movement. I work in public relations, so I geek out when something so simple raises international awareness. At the same time, as a cancer survivor, a woman and someone who’s spent her entire career in the healthcare/pharmaceutical industry (including breast cancer causes), I can’t help but feel shocked, and sort of naive, to learn how COMPLICATED having a double mastectomy is. Angelina Jolie failed to mention that part in her NY Times stories.

Encouraging women to be strong, run out and chop their tits off is empowering and brave, but it only scratches the surface… it does nothing to prepare women for what that entails. When you learn how crazy reconstruction is, the mastectomy almost seems like the easy part. Further, the success of your reconstruction depends a great deal on the talent of the breast surgeon doing the mastectomy. A plastic surgeon does the reconstruction. You literally have to find a dream team.

You’d have to be cold, dead and empty inside NOT to admire women who’ve faced this emotional, personal and terrifying decision, but now that I know what that decision-making process really looks like, my perspective has sky-rocketed even further. I’m going to tell you why.

I’ll start by saying, once again, I’m grateful my diagnosis is DCIS and not something more progressed requiring additional treatment. This diagnosis has given me the gift of CHOICES. Breast cancer patients, particularly those with zero body fat or who need chemo and radiation, have more limited choices. But, choices are a double-edged sword. All of them are hardcore, long procedures and in my opinion, none of them are great… likely the reason some women opt to forgo reconstruction altogether. “Great” would be never having to lose your own breasts. I’ve been blessed with a pretty awesome pair of large, natural boobs. They’re so nice, they’re a conversation piece, and have been for decades… HILARIOUS conversations, obviously. My friends and family will 100 percent attest to this. Go figure I have to lose them, but I won’t digress further. In short, I will (already am) mourn the loss of my boobs and my doctor has big shoes (boobs?) to fill.

boobs
My best friend and old roommate Seana made these shirts for our other BF/roommate Jen when she was battling Stage 3 invasive breast cancer… being put to good use again (July 6, 2015)

I’m lucky I’m a candidate for a nipple and skin sparing mastectomy. This is important to me. I’ve met other women who didn’t have that luxury, or who didn’t care about that luxury. Call me crazy, but I’d like to keep what’s mine, if it’s safe to. I’ve had plenty of procedures that have left me with scars all over my body. Sure, scars are cool… they’re about as cool as having cancer. I think if most had the option to NOT have a huge scar on their body, or not have a part of it amputated, they’d take it.

Once I was diagnosed and started telling close friends, I was immediately connected with women who’ve had reconstruction. They told me about their experiences. They lifted their shirts for me and let me feel their boobs. Some of them had reconstructed or tattooed nipples and they looked amazing. The doctor can use skin from your thigh to create a nipple, and I think there are about FIVE people in the entire US who tattoo nipples well. Women travel hundreds, even thousands of miles to have it done. That’s a lot of work, and we haven’t even gotten to the actual boob yet…

The treatment you are having, or in my case, HAD, also impacts your decision. Radiation damages the skin and how your reconstruction heals. You can develop complications, infections, capsular contracture (scarring) and that can cause implants to look and feel like two tin cans in your chest. Those 14 days of radiation that caused my breast cancer could potentially impact how I heal from the mastectomy and reconstruction. I don’t know what Angelina Jolie or Christina Applegate chose, but for me and many others, it’s not at all as simple as removing my breasts and throwing in some implants, because if your skin is unhealthy, your body can reject the foreign object. You have to use body tissue to reconstruct completely, or to surround implants to protect them… and this is where things get interesting.

I took the entire month of July off from work to research reconstruction and met with several plastic surgeons, and I’m glad I did. The science behind reconstruction is FASCINATING.

I decided I want to look as close to “me” as possible. There are more options out there, but given my history of radiation, I was recommended the following options to be conducted IMMEDIATELY FOLLOWING my mastectomy:

  • DIEP Flap — This approach uses lower abdominal fat tissue, no muscle, to reconstruct your breasts. The doctor must perform micro-surgery to remove the arteries in the groin area which feed the fat tissue. Then, the arteries are reconnected back into the chest, so that they can continue to supply fresh blood to the fat tissue that is being used to reconstruct. AMAZING. The result is a very natural look and feel, lower risk of infection, and a “free” tummy tuck (yes, there are a few silver linings to having breast cancer). The cons: 8-10 hours (or more) of total surgery. Hugely invasive and highly complex (your doctor must be a PRO and the hospital staff must have an infrastructure to manage your recovery, not everyone DOES this). At least 8 weeks recovery with lots of drains. If you’ve never had children, you must consider that if you do in the future, your skin is now already stretched significantly. You need to have enough fat tissue for DIEP to even be an option. Depending on where your arteries are in your groin/belly, they may need to take some muscle, which means they replace it with mesh and you now have a risk for future hernias. And, you need physical therapy afterward.
  • Latissimus Dorsi Flap — This approach uses your back muscles to either reconstruct completely or wrap around an implant to protect it. In a nutshell, the surgeon cuts through your back muscle and wraps it around the front to your chest, along with any back fat you might have. I’m told this is the way to preserve the size and most natural feel. The cons: also an 8-10+ hour total surgery with lots of drains, intense physical therapy and what I have to imagine, and have been told by other patients, is a permanent impact on your future mobility (the back muscle used is what you use to twist your body). The result may look good, and I’m sure may patients do very well, but I have not spoken with any who have said they feel as mobile as they once did, even five years later. They DID say they spent two years sleeping like a mummy and unable to go to the gym — TWO YEARS.

So… WTF do you choose? I obviously said, give me a tummy tuck stat. Here’s the funniest part… my plastic surgeon discouraged me from the DIEP, because — get ready for it — I’M NOT FAT ENOUGH. I’m carrying around an extra person these days, thanks to my thryoid having been removed, but I don’t have enough fat tissue in my belly to construct breasts at my current size, which also means the likelihood of being able to save my skin and nipples would be low. They cannot take fat from multiple areas and no, they do not take donors  (everyone I know has asked, you know you are thinking it…).

My doctor strongly encouraged the LAT flap… and my heart kind of sank. I booked my surgery date, but with reluctance.

To give some context, I met with my plastic surgeon for the first time on June 5, still in shock that I even have to go through this. He was the first plastic I’d met with. I was in his office for FOUR HOURS. I walked out with Peg (my mom), she looked at me with excitement and said, “Isn’t he great?” I looked at her and burst into tears. Holy overwhelming situation, batman. What do I do now?

crying
after work on June 16, still trying to wrap my brain around this and battling major anxiety.

I decided then and there, I would not be convinced until I’d spoken with as many GOOD plastics as possible, and I started doing my research. I had plenty of recommendations from colleagues and friends, and I got to work researching who the top docs performing the DIEP and LAT flaps were, NOT plastics who primarily do cosmetic breast augmentation. I checked to see who had been featured in credible medical journals, credible news sources (US News & World Report, TIME, NY Magazine, and medical magazines). I stayed OFF of the Internet and didn’t troll random sites. I spoke with patients. Everyone — patients and doctors — had a different story, a different perspective and a different recommendation. This was helpful, it gave me ammunition and new questions to ask MY plastic, but it didn’t help me make my decision. And I was STRESSED.

I went back to my plastic on July 7, a full month later. I told him I was unconvinced the LAT flap was the right decision for me, that the thought of a permanent impact on my mobility was terrifying and begged him to prove to me why I should reconsider. He admitted, he couldn’t convince me… he understood my concerns… and gave me a third option… just go straight to implant… a whole month later… WHAAAA?

Then my interrogation started: What about his concern about my radiated skin? What about the implants hardening? Why was I only hearing this now? His answers were simple and made sense: “Mary, you have the BEST breast surgeon out there. I would not be recommending this if you were having your mastectomy by any other surgeon, I’d be telling you the LAT is your best option. I’m confident your breast surgeon, Dr. B, will make sure the skin envelope is pristinely managed so that you don’t reject a foreign object. You haven’t had radiation for weeks and weeks like other breast cancer patients, whose skin LOOKS radiated, burned, scarred and thin. Yours was only 14 days, 17 years ago… you will be fine and I’m confident this is the best option.”

And, I was skeptical, but believed him…

A week later I saw a brilliant plastic at NYU for an opinion, someone a good friend recommended (she’d done her breast reduction). She asked me what I’d been recommended. She IMMEDIATELY told me, straight to implant is what she’d do, and why the DIEP and LAT procedures were not optimal, for ME. Her reasons validated everything I’d felt, and had been told by my plastic. She ALSO said, there was only ONE breast surgeon in all of NYU that she’d recommend do the mastectomy, to ensure the least risk of complications. She also said she’d treated many patients just like me, who’d gotten breast cancer as a result of chest radiation due to Hodgkin’s Disease, and they’d done very well. She also said she knew and had studied with my plastic surgeon. And all of a sudden, I had peace of mind.

So that’s the decision that took an entire month to make: bilateral mastectomy and at the same time, my plastic will insert tissue expanders under my pec muscles. I will wake up with smaller “boobs” and go home with about four drains. I go back and forth to the doctor for the next 6-8 weeks and during that time, they inflate the expanders to the size I want to be. In about 3 months, I go back in for a quick in/out surgery where the plastic goes back in through the same incision, removes the expanders, and any scar tissue, and inserts the implants, which are wrapped in Alloderm (cadaver skin) to protect them from rejection. Yikes. This is happening.

The lesson from this long ass post: if you have a complicated and serious medical condition to deal with, DO YOUR RESEARCH. Don’t settle for a decision your gut tells you isn’t 100%. Ask questions, poke holes, and demand to know “what if.” When it comes to getting second opinions, do what you have to in order to get the appointments, LIE if you have to. I cannot tell you how many doctors would NOT see me because I’d already scheduled a surgery. Memorial Sloan Kettering would not return my calls. In fact, the admins I spoke with asked ME to call back daily, because they don’t meet patients for second opinions… “they don’t have time for that.” I’m sorry, but I didn’t realize meeting with a doctor at such a prestigious institution in NYC when you have breast cancer was the same as trying to get a resi at Del Posto for dinner. Shocking, but then again, everything happens for a reason.

Again, a lot to absorb. My surgery is Aug. 6. I’m mentally preparing (slowly starting to freak out). I’ll post once more before I go in. Much love.

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so, I have cancer… again.

A lot of big things happened for me in June, but the most significant was ironic… June marked my 17th year in remission for Hodgkin’s Disease. This past June I received my second cancer diagnosis: ductal carcinoma in situ (DCIS) in my left breast. Stage 0, non-life threatening and non-invasive breast cancer, found because I’ve had mammograms/MRIs annually since age 24. To prevent recurrence, I will have a bilateral mastectomy on August 6. Reconstruction will begin at the same time.
Holy shit. Buckle up.
buckle up
driving to the Jersey Shore at 8 a.m. on May 23, 2015… still blissfully unaware I even have breast cancer.
Like I was told so many years ago, my breast surgeon said, “You are lucky. Your cancer was caught early. You will be cured. But, your road ahead will be tough.” Dealing with chemo and radiation in high school WAS tough. I’m relieved I don’t need it again , but a bilateral mastectomy with reconstruction starting in August is a whole different kind of tough.
I’m aware that not everyone knows my story from the beginning, and that has everything to do with the present, so like any story, I’ll start from the beginning… get a beverage of your choice, this post will be the longest one.
I have no family history of cancer. I was diagnosed just days before my 16th birthday with stage 1A Hodgkin’s Disease. I’ll never forget the moment the oncologist said, you have Hodgkin’s Disease, and the sound of my mother’s breathing as we processed that… I had no idea what the doctor was talking about, I had no idea he was even an oncologist, until I heard the words “chemotherapy and radiation.” Then I understood everything. And I was mad. I was so mad. The doctor was talking, but I heard nothing. Then he looked me in the eye and said, “This is going to be a tough 6 months, but after it’s over, you’re going to be cured.” And I thought, well, my sweet 16 is in two days. At least I can party like a rockstar, in a beautiful dress, with my closest friends and family, before all of my hair falls out and I spend the next several months barfing. The thoughts of a teenager…
After one surgery, a bone marrow biopsy, dozens of scans, 3 cycles of chemo, 14 days of radiation and one last surgery to remove my mediport, I WAS cured, for all intents and purposes… but by no means was I done with cancer.
Those 6 months WERE tough. Chemotherapy is disgusting, and not just because you feel nauseous and lose your hair. You lose your taste buds. You’re on a ton of daily medications to prevent infections. You’re given steroids which bloat you and keep you up all night. Your face becomes round and your eyes get dark. You are tired. You have to give yourself daily shots to boost your white blood cells to fight infections. Those shots make your joints weak and your knees give out (your bone marrow is tired from overproducing). Chemo stops your hormones, so my body went into early menopause and I had hot flashes day and night. You can’t be around germy things. If you develop a fever of 100, you have to go to the hospital. Luckily I was never admitted, I came close once.
I was optimistic through the entire experience. I was being treated in the pediatric ward at LIJ, surrounded by children and babies who were much sicker than I was. Some would never leave the hospital. Some would never reach their 16th birthdays. I had so much to be grateful for, and still do. I would be cured. And I never forgot that. Over the years, people have told me how strong I am. My response is, how can you be anything less when you see children, who only know the inside of a hospital and still manage to laugh, smile, play, hug their parents, share their toys and be brave through all the needles, and overnights, and pain. You learn to be strong right away.
I saw the bright side of chemo. No hormones means no monthly period. FLAWLESS skin on what used to be a broken out adolescent face. No hair anywhere, I loved not having to shave my legs. And a shrinking tumor with each cycle. My treatments were working. They were also creating long-term risks I would have to stay on top of for the rest of my life.
  • Hypothyroidism and potentially thyroid cancer
  • Cardiovascular problems
  • Susceptibility to bad sunburns
  • Bone density issues
  • And breast cancer… a 20-30% increased risk
All because of those 14 days of radiation.
In the last 17 years I’ve had countless chest x-rays, blood tests, cat scans, pet scans, gallium scans, EKGs, echo cardiograms, stress tests, ultrasounds and mammograms/breast MRIs. I’ve had more health scares than I can count. I’ve spent thousands of hours convincing health insurance companies to cover these tests, as if they’re elective. I’ve spent even more time navigating what it’s like to be treated as an adult, no longer a pediatric patient. I learned that sadly, most healthcare administrators don’t care enough to go beyond their most basic duties. Medical records gets lost, messages get lost, doctors forget to call you back, they forget to remind you to come for your annuals. You fall through the cracks of our unfortunate healthcare system, as if you have time to make sure healthcare professionals are doing their jobs. You have to be your own advocate, you have to raise your voice, you have to be assertive, direct and sometimes rude. Thank goodness LIJ enrolled me in their survivorship program once my 10-year remission visit was completed. They handed me a roadmap to ensure I stay healthy and this has been invaluable. They still keep in touch.
In 2009 I had a private reading with a medium who pointed to the spot on my left breast where the DCIS was just found. She told me, there’s a lump there. I told her I’d just had my mammo/MRI and all was clean. She said, if you don’t have it now, you will. It’s going to be fine, cancer isn’t taking you down, just be prepared.
In 2011 an ultrasound of my thyroid showed a tiny nodule that my endocrinologist insisted on biopsying, given my history. This came back atypical and without question, the recommendation was to remove the entire thyroid. It was already barely functioning and if there was one nodule, there would be more in my future. First broken body part removed…
In 2012 when I went for my mammo/MRI, the radiologist said he wanted to do a quick ultrasound. I couldn’t believe my ears, even though the medium had prepared me years prior. They focused on the spot in my left breast where she had pointed to, but said nothing to me. When I started asking questions about how big it was, the radiologist looked at me, shocked, and asked if I felt anything, did I have any pain. I just said no, you wouldn’t believe me if I told you. He said, I can only describe what I we see as a cluster of cells. We’re not sure what it is, you are young, your breast tissue is dense. It’s something we should monitor, come back in 6 months. After two more MRIs, and no more changes, I was told to resume my annuals.
This past March I had my mammo/MRI. About a week later I received a notice from my post office that someone (recipient not disclosed) was trying to send me a certified letter… could have been from anyone. I work M-F, 9-5 and am never home to accept a certified letter. Those are also the post office’s hours. When would I ever be able to get this letter? And why should I make it a priority? I had no urgency to do so since I didn’t know who was sending it. I never received one phone call from a doctor, why would I have any reason to believe it was from mine?
Almost a month later, on a Saturday before a business trip to Las Vegas, I made it to the post office before noon. I was handed one envelope, with two letters in it. The first read, your mammo came back fine, please come back next year. The second letter read, your MRI was abnormal, please follow up with your doctor ASAP. HUH? Did the person stuffing the envelopes even read them? Did the person typing the generic shitty template put two and two together? DID ANYONE TRY TO CALL ME? The next business day, from my hotel in Vegas, I spent several hours trying to connect the dots. What were my next steps? What does “abnormal” mean? Why hadn’t the radiologist just done an ultrasound like he had in the past on the same day I’d had my MRI? I spoke with the OBGYN who had ordered the MRI, and the radiologist office who performed it. Nobody could give me a straight answer, nobody would take responsibility for never having called me, nobody could tell me how I’d fallen so far through their cracks, but after two hours, they finally confirmed, you actually don’t just need an ultrasound, you need a biopsy. The cells grew.
Then, shit got pretty gangster. People started doing their jobs really quickly. Or so I thought.
classy woman little hood
I had an MRI-guided biopsy on May 1. A few days later, my (incompetent) OBGYN called with the results. She was a day early, so I knew it wasn’t good news. In her bubbly, amateur voice, she said, “I have GREAT news and some not so great news. The GREAT news is, you don’t have breast cancer, so that should be a relief… BUT, you have atypical cells, so you really should follow up with a breast specialist, I can recommend someone in the area for you.”
No thanks doc, I’ve got this.
I called my mom. I made an appointment with a breast surgeon on Long Island to appease her, and another closer to where I live upstate. In my mind, I trusted what the medium had said. This was not the end of the world, I was going to be just fine, but what I had to deal with was just an inconvenience. I had already decided to have a lumpectomy. I didn’t want atypical cells turning into something worse.
My appointment with the LI breast surgeon, Dr. B, was June 1. Weeks prior I had requested to have my medical records sent to her in advance, and the radiologist’s office sent them to the wrong office. More frustration, more waiting… I finally went into the exam room and Dr. B asked what brought me to her. I told her a biopsy had shown atypical cells. After a few minutes, she asked me to dress and meet her in her office where we could talk. In there, she told me, “I don’t know who told you you have atypia, that was wrong information. This is more serious. You have DCIS, it is early stage breast cancer that requires treatment, and there are a few options we need to discuss…”
And all of a sudden, I was right back in that moment. I heard my mom’s breathing. She grabbed my hand. I completely lost my shit. Except this time, I heard every word the doctor said, because when you’ve been where I’ve been, and know what I know about the healthcare system, you pay attention.
A lumpectomy was an option, but only if followed by radiation, which is what landed me here in the first place. Another alternative was to follow a lumpectomy with 5-10 years of tamoxifen, a good drug, but one that would mean no children (you cannot be pregnant on tamoxifen). At 33-years-old, that is not an option for me.
Bilateral mastectomy it is. I don’t want to worry about breast cancer ever again.
This is just the tip of the iceburg. There is much more to tell, but this was a lot… process it. I’ve learned a lot of lessons, some of which you may have picked up from this first post, but more that I will share as this ride continues. When all else fails, you know what? You just gotta be tough. #BOOM
bad ass