when it rains, it pours (champagne)

I had a completely different blog post set to go today… and in line with the theme of my life (and the original post), sometimes things don’t go as planned. Sometimes life takes a 180. Sometimes it’s good, sometimes it’s bad. Today, it’s good.

The results of the Oncotype DX test came in today: LUCKY 7. A great sign that I’ll likely just need hormone therapy, and not chemotherapy. All of my limbs are crossed for good luck. I see the first oncologist on Monday and will know more once I have expert opinions.

I also visited the plastic surgeon today and he took out my last drain. Another rainbow of awesomeness. It wasn’t quite ready to come out, so I go back tomorrow to make sure nothing is pooling in my boob, which the PA called “juicy.” That’s right, gurl. They always were.

The last week and a half has been tough, and when things get tough, you start to weaken. Hence, the original post below, written before the universe decided to throw me a bone. The original post will have you wanting to slit your wrists… I know how you all love a good cry, so I kept it, because it’s necessary. Grab a glass of something and read it with a smile, and a sob, and a few more smiles.

This post is dedicated to my Duanester. He’s already seen this post. He said it was good.

Duane has made me (and some others) want to punch him in the face many times in the last year. I’m sure he’s wanted to do the same to me. I’m sure a lot of times I deserved it. But we’ve also shared so much love, memories and ridiculous inside jokes for the last five years, and I know the universe put us together for a reason. There are no coincidences in this life.

This is Duane and my all time favorite song. We were both shocked to learn that when we first met #LoveAtFirstSight. I always thought, this would be a very weird wedding song. I didn’t realize I wouldn’t need it for a wedding. I’d need it for this memoir. It makes perfect sense.

Love you my Duanester. You were tough to put up with someone like me. Always keep it in the middle ❤

image

++++++++++++++++++++++++++++

ORIGINAL POST: “the struggle is real”

Anxiety is a motherfucker. I’ve felt it inside my chest, and inside my head, steadily since June 1.

It’s crazy the power of the mind and its ability to physically take over. It’s actually impressive how strong a hold anxiety can have… how it can leave you paralyzed and absolutely terrified.

image

I’ve always suffered from work-related anxiety — my mind races, I get nervous about a big presentation, I anticipate next day challenges, I know I have to wake up extra early and don’t want to be late, so I barely sleep at all… it’s all pretty standard, for anyone.

The anxiety I’ve felt since June 1 has reached a whole other level of crazy. It’s not just related to having breast cancer, or the struggle I went through to get diagnosed, or the latest development that it’s apparently invasive.

At the same time I was battling doctors to figure out what was really wrong with me, my entire world literally flipped upside down and fell all over the floor. Now, post-mastectomy, I’m dealing with the fall out of ALL of it. It’s this bigger picture of my life right now that prompted me to start blogging in the first place.

In June, I wasn’t just diagnosed with DCIS unexpectedly. After months of discussion and effort, my boyfriend of five years, a man I love dearly and planned to marry, Duane, also moved out of the house we shared and we ended our relationship.

YUP. You just read that. Full disclosure, he’s already read this post and fully supports it.

paulo coelho

I will not share personal and private details about my relationship with Duane and why we decided to part ways. The moral of that story is simple: sometimes (often times) love just isn’t enough. Sometimes things don’t work out the way you planned. But at the same time, love is powerful… and powerful love gives equally powerful anxiety a run for its money.

So to be clear, this post is not about what pieces of shit men are or how Duane is the root cause of all of my anxiety. It’s about what people who love you do to support you when you’re faced with the shittiest possible circumstances. It’s about how people show up when shit gets real — your best friends, your family, strangers and even your now ex boyfriend. It’s about accepting life as it comes, even as torrential as mine has been, and moving past the life you planned to allow room for the life that needs to emerge.

image

It’s next to impossible to process with any kind of sanity a major break-up that happens at nearly the exact same time your second cancer diagnosis is handed down. I had no idea how to tell anyone I had breast cancer after all these years of being in remission. I was embarrassed to tell people Duane and I were breaking up, when the first question people would ask was, “How’s Duane handling this cancer nonsense.” I didn’t want to say the words. I didn’t want to tell this story a thousand times. I didn’t want to look people in the eyes and watch them crumble. And I didn’t want people gossiping and assuming things behind my back. So in all honesty, I can count on one hand how many people knew what was going on with my health and with Duane.

I’m grateful that despite many difficult relationship conversations, Duane was with me every second through finding out I needed to have a biopsy, while I was on a business trip all alone in Las Vegas and far away from any source of comfort (I did end up spending the afternoon at this spa, it was necessary). I’m grateful he insisted on driving me to have the biopsy on May 1, even though plans were in place for him to move out and I was trying to shut him out. I’m eternally grateful he persistently checked up on me after every doctor appointment, particularly my June 1 appointment that I expected would be very standard and turned out to be everything but standard.

I’ll never forget that day… June 1 was the day anxiety kicked break-up sadness aside and grabbed a hold of me hard. All of a sudden, I didn’t have any time to be sad about my break-up. I simply needed every best friend I had, Duane being front and center. Just because you break up doesn’t mean you don’t show up.

My mother and I numbly walked out of Dr. B’s office into a gloomy, drizzly, grey parking lot (how appropriate). We sat in the car for a few minutes to figure out, what now?? Do I go home with her and face my poor dad? No way. Is she actually going to let her daughter drive two hours home alone to Beacon, to a house once filled with love and now filled with petty arguments? Apparently yes… she didn’t really have a choice, although she did try to convince me to let her come. I needed to be alone. I needed a good drive. I needed the old comfort of MY home. I needed to cry ugly and loudly by myself, while listening to the saddest playlist ever. It’s a girl thing. I did talk to my best friends Jackie and Colleen from the car on the way home. We all cried together.

I got home, climbed onto the couch with my pillow and my old teddy bear Doc (my first teddy bear, a gift from when I had cancer the first time… yes, I’m in my 30s) and waited for Duane to walk in the door. And when he did, and looked at me in my swollen red eyes, and looked at the paper Dr. B had drawn on to describe my diagnosis and recommended surgery, he didn’t quite understand. And then I had to say it, “I have breast cancer,” and he fell apart with me, and grabbed a hold of me tight, like a best friend does.

And after a little while, we did another thing that best friends do… we ordered the fattest meal possible from our favorite local diner and sat in front of the TV watching DVR in pajamas for the rest of the night.

In the days that followed, June and the first half of July, I was truly manic. I’d had my cry and now had to kick into planning and execution mode. Time to get to work, bitch.

image

I made lists of the things I needed to do in June and July: tell my boss/coworkers; research and meet with plastic surgeons; decide on which very complicated reconstruction surgery to have and prepare myself for months of physical therapy, recovery and perhaps a lifetime of not really feeling like myself again (holy shit); divide up the items Duane and I owned and clean the house that was now missing all of his things; get a handle on the finances and bills that Duane always managed for both of us; and importantly, reach a huge milestone in the skincare business I own: become a level 5 leader, a personal goal to make sure one good thing happened in June.

I insisted on preserving what was supposed to be the “Summer of Mary,” going to Maine with my family and visiting my brother and his family in LA… who knows when I’ll get to pick those babies up again. Really, I was adamant that the shit hitting the fan would not stop me from living life my way. And it didn’t… I just lived with a permanent tightness in my chest day and night, like I was carrying an elephant around all day long.

I couldn’t sleep in a house that all of a sudden sounded and smelled differently now that Duane was gone, so I either stayed up until the early morning hours starting projects and checking off lists, or I medicated myself to sleep. Regardless, I’d wake up with a start, early in the morning. My feet would hit the floor and I would go, fueled by anxiety, adrenaline and a feeling that time to get everything done was running out. I luckily had enough vacation days at work and was able to take the entire month of July off. I was a waste of space there in this state of mind anyway.

image

I slowly started to tell my closest friends and family, and they flocked to me. They helped me clean and organize my house. They helped me feel normal, brought me wine, took me out, DISTRACTED me. They helped Duane wrap his head around this insane situation and offered him advice on what to do next. They planned an incredible party for me in NYC, HOLLApalooza 2015, to celebrate life and friendship and new beginnings. They bought me things they knew I’d need, that I hadn’t even thought of. They helped me start this blog. I’ll be forever in their debt. I have the best people in the world in my corner. I don’t think many people can say that and really mean it. A future post will be dedicated to my kick-ass posse.

This feeling of friendship and love only escalated and overpowered anxiety when I launched this blog. The response I’ve gotten has been ENORMOUS. Tougher Than TWOmurs has reached people I’ve never met, or that I’d lost touch with, and has fueled such incredible positive energy, which prepared me for the hardest part, my surgery. I’m convinced the only reason I left the hospital as soon as I did is because of the constant flow of well-wishes, text messages, Facebook messages, phone calls, that came in droves, distracting me from how shitty I felt and replacing the pit in my stomach with warmth in my heart. I’ll be forever grateful. It meant more than anyone could have ever known, and now you do. Duane showing up at the hospital and staying for two nights sealed the deal.

image

It’s been exactly three weeks since I had my double mastectomy. Recovery-wise, my first week went so much better than I ever expected it would, but that doesn’t mean it’s been a walk in the park. The first few days and nights out of the hospital were tough. Thank God I had a crew helping me around the clock.

Showering, getting dressed and doing my hair are interesting experiences. Daily functions get a little easier everyday, but each new day brings a new complication in the recovery process… my chest muscles are spasming, nerves are angrily coming back to life and the pain and discomfort just take on new forms that I have to get used to all over again. It feels like I have two bricks sitting on my chest and lumps under each arm that create constant tension in my torso. Nights are filled with interrupted sleep (you just cannot get comfortable) and medication doesn’t really work. I cannot do basic things like open doors, pour myself water or sit up after laying down. The healing process is annoying as hell — I want to be better now, and instead I’m extremely stiff, can’t move my arms much, am forced to sleep on my back and am tired all the time.

I’m an independent woman living in her retired parents’ home again, and reliant, day in and out, on two people I haven’t lived with for over a decade. As incredible as my parents have been, and even though their home has been flooded with the kindest of well-wishes, flowers, desserts, cards, calls, friends, family, laughter and love, there is a hole… I long to be in my own home, with my best friend Duane, who knows exactly what to do, what I need and how to make me feel better, and it’s just not going to happen, nor should it happen. My life as I knew it, and loved it, is once again forever changed, and it sucks. That’s all there is to it.

That sadness I thought was kicked to the curb has now teamed up with anxiety and come back with a vengeance. It didn’t help to learn after week 1 that my journey with cancer is far from over. What. The. Fuck.

Duane was the first person I called.

image

In this circular pattern my life tends to take, I had my day on Aug. 13th to cry and pity myself, and then I got to work. How am I going to plan each and every day from now through September, which doctors will I see, will they even SEE ME (let the hounding commence), if I need chemo, will I be able to travel or attend my best friends’ weddings in the fall, when am I going to harvest my eggs… I HAVE TO HARVEST MY EGGS?? I don’t even have a husband in my future anymore, when the hell am I going to use these eggs I have to pay thousands of dollars to harvest? What will the side effects of the hormone therapy be, am I going to turn into a man?

When the hell will I ever get HOME and back to some normality…

This tough bitch isn’t feeling so tough these days. I guess even superwoman needs a vacation every now and then.

I had no idea how to end this post on a more positive note. These last few weeks have left me pretty hopeless. So I asked Duane… and that’s what the silver lining really is. We may have lost the fairy tale, but we got to keep the friendship.

In this life, we ALWAYS have a choice. Wallow in the sadness, or accept what is and find the good in it. Have faith that once the air is cleared, the mind will be too.

And then find a hundred online memes that inspire you to just keep on truckin…

image image image image

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.

image
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).

image
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.

no coincidences 3

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.

image image

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.

image

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.

image
“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.

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

image  image  image

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