i’m so sorry, ms. lewis…

I feel like I’ve heard this phrase, or a version of it, way too much in my life… “I’m so sorry, Ms. Lewis…” “I hate to be the one to tell you this, Ms. Lewis…” “I have some not so great news, Ms. Lewis…”

Life is so full of ebbs and flows. Mine is full of skyrockets and nose dives. This completely bipolar life of mine.

making me stronger

I’m writing this on August 13th, one week post-surgery, the same day I posted my last HI-larious tale about the things you really should know before having a double mastectomy. As I was putting the finishing touches on that last post, I was headed to see my breast surgeon, Dr. B, for my first out of the hospital follow-up visit. Based on how my visit with the plastic surgeon went earlier in the week, I expected to go in and out… I’d have one drain removed and planned to ask for gene testing, something that was offered to me back in June. My doctor and I agree that this isn’t about gene testing for the BRCA mutation, the notorious breast cancer gene. We’re both quite confident my breast cancer has nothing to do with BRCA. The truth is, nobody knows why I had Hodgkin’s Disease when I was 16, and I’m hoping if I get the gene testing, cancer research one day will be advanced enough that I’ll have some answers. If not for myself, then for my family, my siblings, my future children. I’m actually confident this is true. I’ll never stop searching for answers.

But that’s not exactly how my August 13th visit went.

Dr. B took me right in, she checked out my new boobs, she took one drain out, and then she asked me to dress and come to her office… that’s the sign, people. If ever you need to be prepared, when a doctor says, “Let’s talk in my office,” it’s usually not good news.

Dr. B didn’t bother to hesitate: “I hate that I’m always the bearer of bad news.” And my poor, unbelievable mother… her breathing. Trying so hard to be strong for me. Wanting this to be her, and not me.

It turns out the pathology of my breast tissue from the mastectomy showed that, even though all of my breast tissue is now gone, the cancer that was in it was in fact invasive. DCIS, which was my initial diagnosis based on my biopsy, is typically contained in the duct. There was a chance, and I was warned that this was low, that some microscopic cells could have floated outside of the duct… in translation, invading the tissue. Well, that low chance happened. Of course it did.

My new diagnosis: Stage 1A invasive breast cancer, requiring additional treatment.

My doctors are doing additional tests, an Oncotype DX test to be specific, to determine the potential risk of my estrogen-receptor-positive breast cancer coming back (recurrence). This will also give the doctors and I a sense of which treatment I’ll benefit from… hormone therapy, or hormone therapy plus chemotherapy. You can read all about how that test works and what it might tell me by clicking the hyperlink above.

And yes, you read that right… I may need chemo again.

If you ask me, I’m SURE I’ll need chemo again. That’s just how my life works. This link is giving me some hope, given the small size of my tumor (roughly 9 millimeters). Also, a sentinel node biopsy during my mastectomy came back fine, a good sign. No lymph nodes were removed during my mastectomy. I’m still preparing for the worst, because I have to.

As I learn more about this Oncotype DX test, I have to laugh, because there is a scoring mechanism that helps determine risk. Basically, if you score 18 or lower, you just need hormone therapy. Anything higher than 18 means chemo should be considered. The number 18 has been a significant number throughout my life. It’s my lucky number, it’s a number that pops up in so many things that I do… no doubt a sign from the universe… I’m going off on a tangent, but I never fail to see the irony.

There are no coincidences in this life. You gotta watch for the signs… life is so weird like that.

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Photo credit: Mattson Photographers http://www.mattsonphotographers.com/

The results of the Oncotype DX test won’t come back for a couple of weeks. In the meantime, I’ll be searching for the best oncologist and making additional plans that I was not prepared to have to make. I’m sure I’ll also be on the phone with my insurance carrier to argue with them about covering the cost of this test, which is several thousand dollars. This crazy circular life of mine… I’m in a constant state of deja vu, and not in the awesomeness that is Beyonce way (I couldn’t end my day without praising the queen… “don’t worry, be yonce”).

I’m encouraged that my breast cancer seems to be very treatable and survivable. Research shows a 5-year survival rate of roughly 98%, which is higher than what my Hodgkin’s was back in 1998 (I recall at the time, survival was 80%). This is GREAT news. I should be thrilled. Today, I’m just not. I’m fucking pissed.

I came home and started drinking (the perks of avoiding the percs, pain’s got nothin’ on me either) and finished my last post. If I’m going to blog, I will do so with integrity. Plus, I knew it would get you laughing, and this one would have you sobbing. Sorry. But let’s be honest, who doesn’t appreciate a good cry once in a while? My mom actually used to rewind this part of Steel Magnolias over and over so she could cry, over and over… again, the irony (Peg even looks like Sally Field).

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sad clown baby

Livid does nothing to describe my mood right now. But earlier I was just sad. I’m still so sad. I’m sad I have to deal with this nonsense, again. I’m crushed my mother has to watch me deal with this nonsense again. Her baby, her only daughter that she tried one last time to have and kept a secret for months from everyone, even my dad. My mother who told me on June 1 that she knew the day would come where the doctor would tell me, you have breast cancer. And she kept that to herself too, for 17 years, to spare my heartache and sanity, and told me how relieved she was that the day had finally come where we could just deal with it and move on, never worry about cancer again.

She carried it, and made sure I never had to.

And now that I have to, she’s broken for her equally broken daughter. What the fuck would I do without this remarkable woman? I always have to go back to how unbelievably blessed I am to have her here, making brilliant decisions and teaching me to do the same. She’s my rock. She’s the reason I came into the world and why I’m still alive today. There are no coincidences in this life.

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Tonight was the first time breast cancer ever made me feel empty. I knew I had to have a mastectomy, but I never felt sick. I wrote about how terrified I was to wake up feeling this emptiness, this concavity. I was relieved that I woke up from surgery to a whole lot of pain and pressure in my chest, because pain you feel. I’m wondering if that’s the reason I’ve recovered so quickly, pain feels real to me. Tonight, as I type this through my speedy recovery from surgery, there’s really not much physical pain left at all… I’ve mostly weaned off of narcotic pain killers, a huge feat in such a short time-frame. There’s just numbness, and weird sensations in the skin covering my expanders and in the nipples I so desperately wanted to save. It doesn’t feel good at all. It makes me want to jump out of my skin. All I want to do is fall asleep lying on my side, snuggled up to my little baby boy Sullivan. He’s been with me all night.

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I didn’t tell many people today (Aug. 13th), but I hand-picked the few who I’ve worked with in the past that can help me find the best oncologist and treatment, for me. I knew all of these years working in pharmaceuticals would one day come back to repay me. I have a team of badass bitches like myself already making moves and have names of 5 star doctors in my area. And you know why? Because as Tiny Fey would say, “Bitches get stuff done.” And the only thing I can do right now is use all of my fucking anger to absolutely demolish cancer. Dude, I am so much tougher than you.

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I went for a walk down by the beach tonight with my best friend Laura. When I got out of the car, a man on the boardwalk said, “You just missed it. It’s gone.” He was referring to the sunset.

He was wrong. There was still so much color left in that sky.

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“The Bluff” Kings Park, NY Aug. 13, 2015

And there’s still so much more fight left in me. I have to laugh that cancer actually thinks for one second I’m not going to ruin its life before it ruins mine.

Bring it the fuck on, cancer. You must have forgotten that I’ve done this before. I will OWN YOU.

You think you’re gonna stop me from living the life I’ve worked hard for and deserve? I’m off to the Hamptons with my best friends Cathy and Lacey to prove your stupid ass wrong.

Cancer, have yourself a nice little weekend. You best get ready for Monday, because shit’s going down.

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Lacey, Cathy, Mary @ Southampton Social Aug. 15, 2015

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the element of surprise

I’m forever surprising myself. And life is forever surprising me.

When I blogged before my surgery, I was terrified. I wrote about how having a bilateral mastectomy resurrected this feeling of losing a part of myself, something I’d felt back when I was 16 and lost my hair because of chemo. I also wrote that all those years ago, when that gut-wrenching 5-minute experience with my mom shaving my head was over, I went back to my room, forced myself to look in the mirror, and was surprised… I looked good. I looked REALLY good. And the hardest part was over.

Last Thursday morning, as Dr. B wheeled me away from my parents, who could not hide their tears, and into the operating room, where I couldn’t hide my own, I grabbed my god-given, awesome boobs for the last time, looked at Dr. B, in her sweet, compassionate eyes, and I went to sleep.

In what felt like minutes, I was waking up. And the worst was truly over. Just like it was 17 years ago.

I expected to feel awful, 7 hours of surgery is LONG. I didn’t immediately feel so awful. The pain was very crazy, but I was coherent and drugged up. My mom and dad were on either side of me. I was cracking jokes, I couldn’t tell you what they were, but I know my parents, who love to act as if they’ve never heard or used a curse word in their lives, were half-laughing/half trying to pretend “she’s never like this it must be the anesthesia” (NOTE: I’m always like that). I kept asking my mom if she’d called my cousin Lauren, who was in charge of kicking off a phone chain to tell my closest friends and family I was out of surgery and recovering. More truthfully, I was demanding she call Lauren. She finally listened to me, and told Lauren, “She’s up, and she’s already ordering people around.” #ShesBack

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me and peg, just before surgery, Aug. 6, 2015
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me and MUR, just before surgery Aug. 6, 2015

When the nurses wheeled me into my room around 7 p.m., the first thing they did was check my vitals and my incisions. This meant they had to open up my gown and my surgical bra. I had no idea what to expect, but my spirits were up and I was feeling brave. The nurse said, you can look away if you want, and I said, “No fucking way.” (yes, I said the F-word). This was the moment of truth, how could I look away? Again, history repeated itself… the nurse said, “Just so you know… every nurse on this floor has boob envy.” And I understood why… my new boobies already look pretty fucking amazing. Holy cow. How do you spell relief…

More on the new boobs in a future post. Right now, most people are wondering, “So… how did you do?” Here’s how…

The first 12 hours post-surgery were quite possibly the most difficult of my life. I’m not really sure what “recovering remarkably” translates into, but I’m pretty sure I achieved it based on the reactions from the nursing staff, my doctors, my parents and my close friends. But for me, it also wasn’t like there was a choice. That’s how I’ve always been. Set a goal and shatter it. When you see a challenge, you tackle that shit… you move onto the next one, tackle that… wash, rinse, repeat. To me, this is just logical.

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I only spent two nights in the hospital. I expected, and was told, I’d be there through the weekend. I left Saturday morning, as early as possible, and literally walked through the halls (politely) hounding the nurses to give me my discharge papers and remove my IV. I’m sure they loved that.

bitchcraft

Truth be told, my nurses at Huntington Hospital on Long Island were incredible, and that made a lot of the difference.

But that first night was so tough. My parents left and I was lucky enough to have my own room, but I was in excruciating pain, withdrawing from the enormous amount of anesthesia, I was catheterized and had a button to push any time the pain was unbearable. The medicine coming out of the pump (dilaudid/hydromorphone) was making me barf despite very effective anti-nausea medications (Zofran and compazine). My mouth constantly felt and tasted like sawdust, I could barely keep ice chips down, so the nurses wouldn’t give me any food to coat my stomach. I had to choose between pain management and constant barfing… isn’t this the picture of true glamour?

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about 2 a.m. Aug. 7, 2015, dilaudid makin’ me grossie

I dealt with this for a few hours. I had removable oxygen tubes in both nostrils and compression cuffs on both legs to prevent blood clots. When you’re that uncomfortable, you just can’t sleep, and minutes start to feel like hours. I was antsy and my mind told me it was time to start moving, but my body wasn’t ready. It’s in those moments that you exercise mind over matter, like Uma in Kill Bill (wiggle your big toe). I knew the first big hurdle was walking, somewhere, anywhere. And at 430 a.m., I decided to try it.

believe

I’d been avoiding the pain pump, so my pain was high, but my stomach was cooperating. My nurse gave me a shot of Zofran so that when I went upright I wouldn’t lose my cookies. My teeth started chattering and my body started shaking as if it was hypothermic, a sign of anesthesia withdrawal and your body’s reaction to intense, uncontrolled pain. The nurse had me swing my legs to the left edge of the bed and helped me sit up… I got that far, gravity immediately settled in, and so did the weight of the 7 hours of tearing apart my torso… and it sort of resembled this. The pain was so incredible it brought me to sobs. The nurse urged me to press the pain pump until it stopped beeping (it locks you out automatically before you overdose). The pain subsided fast, the sobs took a little longer. I was out of breath, but the nurse was proud and supportive. First hurdle overcome. It hurt like a bastard, but it took all of a minute.

Next I actually had to walk. A huge wave of nausea washed over me (I def pressed the pain pump about 17 times) and I didn’t think I could stand. The nurse, in a way that only a brilliant nurse can, encouraged me by saying, “If sitting is all you can do, it’s more than you were doing a minute ago. We don’t have to go very far. We can sit here, or we can just walk a step or two to the chair and sit in it. It’s up to you.” A good compromise to walking out of the room, down the hall and back seemed like walking across the room to the sink, since I’d probably need to barf in it anyway. I stood up slowly. I waited, breathed away the urge to hurl, slowly walked to the sink and sucked on a few ice chips. I said, “That’s it, I’m good, please bring me back to bed.” Two steps back and I hurled into a bucket that the nurse got to me just in time. When I stopped, I wiped my face, took a breath and said, “OK, let’s go down the hall.” And the nurses BEAMED. They promised me, it only gets easier, and much easier, from here.

universe has my back

I slept intermittently into Friday morning, laying down was stiffening my entire upper body, but the nurses were right — things started improving quickly. And that’s because I kept moving.

Friday

The nurses brought me a bland breakfast, I ate half of it sitting in a chair next to my bed. Since I was eating and drinking, the nurse took out my catheter. I told them to get me off of the pain pump, and that meant they could also remove the annoying oxygen tubes. I started a new pain management cocktail and the compression bands on my legs came off. This was all within about 5 hours. I was feeling human again.

My best high school friends Jackie and Laura showed up, and they helped me get up, walk to the bathroom, I brushed my teeth (and did again probably a million times more that day), Jackie washed my face, they brushed my hair and helped me put it up. My cousin Lauren showed up and helped me ditch my hospital gown (it just makes you feel like a sick, incapable person walking around with a gown your ass hangs out of, let’s be real). She helped me into my real clothes. I was LOOKING human again. I sat up in bed, stood and walked a lot. I started stretching my arms lightly. My friend Laura came back that night with our friend Lysa. Nobody who visited came empty-handed. Everyone brought something I really needed: magazines, slippers, roll on antiperspirant (very important when you can’t lift your arms or feel your skin well), healthy snacks, light, soft PJs that would be easy to put on, the list goes on. I don’t know what I’d do without these girls.

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Best friends (357 crew): Laura, Me, Jackie and Lysa, Aug. 21, 2010
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my cousin Lauren, really my sister, and I in Aruba July 2009

Friday night, Duane stayed with me in the hospital. The poor guy barely slept and was so nervous I might break. He also brought me all kinds of things I’d forgotten that I really needed, helped me in and out of my bed, in the bathroom, with my hair, arranged pillows, carried things, drove me home to my parent’s house Saturday morning, ran to stores to buy stuff I realized I’d need, zip-front sport bras included (yes… for me, he was the creepy guy at Sport’s Authority way too early in the morning looking at bras).

The bottom line is, I did fabulously those first two days, and I never expected to. I owe this to the people who love me that showed up and helped me, physically and digitally. I had wifi the entire time (talk about something incredible to pass the hours I was awake). My social media notifications were in the several hundreds, as were my text messages. A lot of people couldn’t believe I was up and so active, so responsive. Many said I was an inspiration… you know what? The love inspired ME and distracted me from focusing on my pain. Love makes the world go round, and when you have a team of thousands routing for you, anything is possible. Saying I’m grateful does no justice to how I really feel to each and every one of you.

My parting words on this part of the adventure are, when you give love you get love. We can waste time worrying and contemplating and obsessing and jumping from one foot to the other, or we can set our minds to a desired outcome, say it out loud to the world with love and commitment, and be open to the possibility that things may not go as badly as we suspect. You MAY just be surprised.

Just like anything else in life, INCHES MAKE CHAMPIONS. Small steps turn into several steps. The time is going to pass anyway, you may as well be productive and working towards your goal, in my case, nearly perfect health of mind, body and spirit. And I wish all of that for you too ❤