taking BRCA control

BRCA: pronounced [Brak-uh]

Today, I Sneezed. — July 10, 2015

Today, I Sneezed.

Today, I sneezed.

I realize that might be an unexpected and weird ‘first thing’ to hear from me, after what has been a pretty grueling 30 days. But I promise you I’ll try to make that seem not so completely ridiculous by the end of this.

First, though, I believe apologies are in order for my radio-silence. I thought I would be on here every day; documenting my progress, sending out witty updates to my friends and family, and writing to those of you that have found my blog to act as some sort of respite or help from their own personal “mutations”, whatever shape or form they may have presented themselves. I picked up my laptop a few times with the intent to do so, but all that could come out was… well… fucking depressing. Documenting something that involves pain, coupled with mental and physical exhaustion, is not necessarily something I am used to or generally interested in putting down on paper. My emotional breakdowns that happened privately, or in the company of a select few, exist only in that moment. Then they are gone. Document them on the internet, and they live on forever. So, based on the fact that I don’t feel the need to contribute any more bleak and disheartening words to the world – because let’s face it, the world is certainly not wanting for in that area – I have maintained my silence. I hope you’ll accept my apology, and we can still be friends.

So here we are, exactly one month after my procedure. It’s pretty nuts to look back on, now that it is over. The relief is palpable… unsettling, almost. For so long, the threat of breast cancer has loomed over my head and now, after the pathologies of my breast tissue came back benign… that threat is a distant memory. Lauren: 1 – Genetics: 0. Obviously I still have the ovarian risks to worry about, and I’ll deal with that in the coming years, but right now I feel pretty accomplished. I suffer paranoia at least once a day that the infection that landed me back in the hospital for the better part of a week and forced the need for a second surgery has reared its ugly head again. Meet my phantom-infection – he’s rude, aggressive, and couldn’t give a crap about your feelings. He comes around once a day, usually after my shower, and casts an ever-so-subtle reddish glow on my left incision. Red enough to freak me out, subtle enough to make me think I am going insane. He’s a jerk. I hope he goes away soon.

I spend the majority of my time at home, on my recliner, watching Grey’s Anatomy and doing Sudoku. The pain is manageable and my range of motion is slowly coming back… but up until today I didn’t quite feel like myself. It’s pretty amazing what your body will do to let you know that something is wrong, and what your body won’t let you do when it’s not ready to do so. There have been a number of seemingly simple motions that I can’t help but laugh at my failure to complete. For one, child-safe pill bottles… push AND twist? ha, yeah ok. Better luck next time. Turning doorknobs was hard for a while, and Brian had to save me when I “locked” myself in the bathroom a couple of times. I couldn’t throw pills into my mouth, so i used a shot glass to dispense the medications into my gullet. It made me giggle every time. I didn’t wash my hair for thirteen days. THIRTEEN DAYS. I don’t think anymore description is necessary.

I like to think of myself as a pretty independent woman, and for the last month I just wasn’t me. Perhaps it’s because my breasts are gone and have been replaced by cold, round bags of fluid. Perhaps it’s because I can’t really look at myself naked in the mirror without looking away. Perhaps it’s because I can’t sleep in bed with my husband because I am unable to lie flat. Perhaps it’s because my digestive system is a mess as a result of the pain medications. Or, perhaps it’s because I have been unable to pick up Piggins in over 4 weeks. The fact remains – something has been missing. That is, until today.

I truly believe my body was telling me that I had an infection, and that something was seriously wrong when I came home from the hospital the first time. My usually punctual period came 12 days early, I couldn’t eat anything, and my skin around the incision was as hot as fire to the touch. The staph infection that was doing a number on my insides remained isolated and didn’t show itself through any conventional “you have an infection” symptoms – I never once ran a fever. But my body knew and was trying to tell me in other ways. The same can be said about the restrictions and the things my body has prevented me from doing this past month. Thanks to my incredible friends and family, my apartment has been full of beautiful flower arrangements (sidenote: your thank you notes are in the mail – writing also proved to be especially difficult) and from day one I kept telling myself, “please don’t sneeze… please… please… don’t sneeze. Lauren, you can’t sneeze it will be too painful, it will hurt so bad, don’t…sneeze.” So I didn’t.

Paranoia.

Fear.

Well, today while I was grinding fresh black pepper onto my leftover salad, I felt it coming. A sneeze. I panicked, grabbed my chest, and sneezed one of the biggest sneezes that has ever been snuzzed in the history of sneezery. And you know what… I’m alive. The discomfort lasted seconds and vanished just as quickly as it came. Sure, sneezing might be a gross and repulsive metaphor for what I am getting at here, and sure I probably could have chosen something less unpleasant, but it proves that something as insignificant and unexpected as a sneeze, can be a way of your body and your mind telling you that you can do anything.

The pain will pass and life will go on.

Excuse me while I get a tissue.

An Open (Albeit, One-Sided) Conversation With My Breasts — June 8, 2015

An Open (Albeit, One-Sided) Conversation With My Breasts

I know I should hate you.

After-all, your homicidal instincts have been scientifically proven by geneticists and doctors… I should say good-bye, and never look back.

Good riddance, right?

You were always in the way… shirts never fit correctly, dresses never hung the way they were supposed to. God-forbid I go braless, and no matter how much I tried to downplay you, you were always so…busty…

you’ve always been such a nuisance…

I think I’ll bring tube-tops back, once you’re gone…Yes. Lots of tube-tops, and halter-tops- no more side-boob, no more sweaty cleavage. So many new fashion possibilities, so much less to worry about…

right?

I have to give it to you though, you did behave quite nicely on my wedding day, didn’t try to steal the show… a nice accessory. My friend Kyle even complemented you… “classy cleavage”, he said.

“Very tasteful, Mrs. Makeanarrow”.

I guess we had some good times…

But you couldn’t just be cool, could you?

So here we are then… In less than 48 hours, I’ll be rid of you for good. Bet you didn’t see that coming, did you? I’ll never have to squeeze you into a sports bra again, no more mammograms, no more tenderness every month… I’ll never have to worry about gravity, or sagging once I have kids.

Kids…

So…I won’t be able to breastfeed. I won’t be able to share that intimate bonding with my children…

bottles are fine… you are easily replaced…

right?

I’ll never have to wear a bra again! No more worry about nipples showing through shirts either…

who needs nipples? I don’t…

So I won’t be able to feel the warmth of a hug against my chest… my hands are always cold, now my chest will match. Touch and warmth are overrated… 

Aren’t they?

I spent some time staring at you today when i got out of the shower. I never noticed how asymmetrical you are…

I’ll likely donate you to medical research after the amputation, so others like you can be stopped. You and your disfigured shape… gone from my life forever.

…You will be gone, and in your place only memories. Memories of hugs and embraces from the people I’ve met, and my children I hope to one day meet. You taught me some valuable lessons… I can’t really remember a time before you.

You’ll be replaced by sterile sacks of fluid, eventually.

Slowly, my Doctor will begin to fill the physical void you’ve left in my body.

I’ll stand there on Wednesday exposing you for exactly who you are as the doctor takes his marker and illustrates exactly where he’ll cut you out.

Any last words?

This has always been a one-sided conversation, you never say the things I want to hear, and now I’ll silence you forever.

Damn you.

Damn you for putting me through this…I have never felt more anxious or fearful in my entire life.

You and your smug silence.

I am so much more than you.

…yet, you are all I can think about.

The Color Salmon and My Crippling Anxiety — May 27, 2015

The Color Salmon and My Crippling Anxiety

I had an interesting encounter the other day that I thought was worth sharing. I was treating myself to a well-deserved graduation ceremonial manicure and pedicure at a local salon that never fails to provide as much spectator entertainment as they do shades of red nail-polish. People from all walks of life go to this particular salon; perhaps that’s why I have chosen it out of the half-dozen within walking distance from my front door. As outgoing as I may seem, I tend to be more of an introvert in such public situations, and it’s a rare occasion that I engage other patrons in conversation. Instead, I sit and listen. Call it karma, fate, destiny, or just chalk it up to synchronic toenail-growth velocity, but I was exactly where I needed to be on this Thursday morning at 9:45am.

In what was most likely an A and B situation that I should have C’d my way out of, I overheard two older women talking as they waited patiently for their nails to dry. They had come in together while I was indulging in a paraffin soak. I would venture to say they were both in their late sixties, or early seventies. They sat adjacent to one another and got their toes painted the same shade of salmon. They were clearly friends – finishing each-other’s sentences, laughing, and simply enjoying what was likely a frequent outing for them. As a result of my eavesdropping on their conversation (don’t kid yourself, you do it too) I was able to learn that the one on the left, let’s call her Sally, had recently gone through a bout of breast cancer. She chose to undergo chemotherapy, to which she didn’t lose her hair and never once felt ill. She had opted for a double mastectomy, without reconstruction. Even though I have been hyper-aware of breasts lately, I hadn’t noticed that she was lacking shape under her blouse. Her confidence and pride was palpable. She was alive and she didn’t give a shit about what she lost or what she went through, so long as there was breath in her lungs. She was able to wake up that morning and make the choice to meet her friend, gossip about their inner-circle, and have her nails painted her favorite shade of salmon. It was the “hot color” (direct quote), after all.

Sally’s friend, let’s call her Donna, had recently read an article – this one, no doubt – about Angelina Jolie’s decision to have preventive surgeries after learning about her BRCA mutation. While she couldn’t remember the specifics about the “diagnosis”, she was able to articulate the basics to Sally who, surprisingly, hadn’t heard of the preventative measures young women were taking to protect themselves and their futures. Of course, this would have been an opportune moment for me to chime-in, but in order to do so I would have had to divulge the fact that I had been snooping in on their conversation, so, clearly, I remained silent to avoid any embarrassment. What followed was nothing birthed of naiveté or ignorance, only fear. Donna’s immediate response was that she would never get the test because she couldn’t deal with knowing her risks. She, admittedly, got woozy simply from getting her blood pressure taken, so a blood-test is not something she was voluntarily going to partake in. Sally, having already gone through the worst of it all, also said she would not get the test done, that she “wouldn’t want to know”. Something about impending doom…

I have been thinking a lot about fear lately. As you know, and as was broadcast to the entire nation via the Oxygen Network, I have a few irrational fears. Birds (yes birds), heights, escalators, fireworks, roller coasters, thunder, flying (a more recent and unfortunate development), and the list goes on. Oftentimes, when faced with any of these array of fears, the encounter leaves me with a crippling bout of anxiety. My shoulders cave inward; I become undone. My husband’s consistent pacifying demeanor and educational background in behavioral psychology helps bring me back to reality and talk me off the ledge. He often says to me “fear and anxiety are just products of facing the unknown”. Unknowns line the beauty of the human condition – inescapable and unpredictable. So why then, since I have made this choice to KNOW my fate and outmaneuver the unknowns, am I still so fearful? I am exactly two weeks out from my surgery, and I am not sleeping. My chest aches and my muscles are tight. There is nothing I can do to keep my mind off of the unknowns. How will I heal? What will or won’t I be able to do? When will I feel like myself again? Will I miss my nipples? Will everyone look at me differently? Will I have any sensation? Will I still feel like a woman? Will I make it through the surgery? What if my heart stops?… These are all questions that are impossible to answer and yet I continue to obsess over knowing the answers.

Let’s hope that Roosevelt guy knew what he was talking about and that the fear itself is worse than what lay just beyond it.

Awe. — May 19, 2015

Awe.

Making the decision to go public with this experience wasn’t an easy one, and last night when I signed up my URL, I had absolutely no idea what to expect.

Today has been truly humbling.

The outpouring of love and support from friends and family has been absolutely overwhelming. I have heard incredible personal stories of similar and not-so-similar situations, encouragement from someone in California I haven’t seen since my freshman year of college, I even had someone from my high school send my blog to the breast surgeons and plastic surgeons  at the hospital where she works. Needless to say, I’m speechless. The validation of both my decision to take my future into my own hands and flip cancer the big-fat-bird, as well as my decision to share this experience openly is a feeling of acceptance that I was unaware that I needed. So… thank you. Thank you for helping me find a little more peace in this decision.

As if today wasn’t wonderful enough, I received a beautiful gift from my amazing mother-in-law. One fear that I have is that I am unprepared for life after surgery… what will I need and what won’t I be able to do? For the last couple of weeks I have been “nesting”, for lack of a better term, for life post-mastectomy: gauze, button-up oversized shirts, pillboxes, surgical-drain paraphernalia, dry shampoo… the list goes on. This heart shaped pillow and blanket set from JSAWMastectomyDesign will help with under-arm pain and pressure especially when I am trying to sleep. Thank you, Momma Mango. I’m incredibly fortunate to have you and your family in my life.

mutant: [myoot-nt] undergoing or resulting from mutation. — May 18, 2015

mutant: [myoot-nt] undergoing or resulting from mutation.

Unless I have uncovered some astonishingly effective SEO strategy, I would wager that most of you reading this right now know me personally in one way or another. Whether it’s from high school, college, work, Miami, volleyball, immediate family, extended family, or from my recent stint on the tube… likely you’ve all met me at least once in your life. Typically, I’m an open book. I’m not afraid of social media, and I’m not afraid to post things about my life. Yes, I really do love my cat that much, and yes I really am a museum nerd. But, this outlet… this blog, is about something I haven’t been so open about. A journey and a destiny that was laid out for me long before I even knew who I was. Let me go back…

I haven’t been secretive about losing my mother. It’s a defining part of my life and has shaped me into the person I am today. She was sick…very sick when I was young…very young. She fought long and hard throughout my childhood, in and out of hospitals. She ultimately lost her battle when I was sixteen years old. She was my hero and my best friend. One of the very last memories I have of her was at the very end of her life. She was sent home from the hospital, there was nothing more they could do… the chemo was ineffective and the stem-cell transplant wasn’t successful. The breast cancer had metastasized aggressively to her brain and was slowly taking over. She spent her days in bed at our home on Long Island, slowly losing her mobility, her bodily functions, her speech. By the end she was almost unrecognizable… her once lively blue-grey eyes were dark, and lifeless. I sat on her bed every morning and told her I loved her before I would leave to go to school. I kissed her on the head every night before I went to sleep. On this particular day though, she mustered up the strength to move her hand outside of the bed-sheet, and she placed it on my chest. She grabbed at my breasts over and over again, her eyes alternating from my breasts to my eyes, and back to my chest. I didn’t know what it meant, or what she was trying to tell me. Tears rolled down her face as she reached in my shirt and held her hand there staring. I got aggravated. I was weirded out, and took her cold hand off of me. She died a few days later.

I think about that moment often, not just because it’s one of my last memories of my mother, but about what she was trying to tell me. Did she already know?

Fast forward nine years later. I had been having some menstrual problems, bleeding more than I should, or skipping periods altogether. I went to a doctor to try and figure out what was happening. I had to fill out all the paperwork, you know the drill: “Do you currently, or have you ever suffered from headaches, chlamydia, bone spurs, dysentery, cholera…”? Then came the family history questions. Cancer has reared its ugly head on my mom’s side of the family for generations… always breast, always fatal. The Doctor barely asked for my consent before he was plunging the needle into my arm to pull blood for a genetic test that would reveal if I had a predisposition for certain kinds of cancers. Because of my family history, he told me that the test would be covered by insurance and it was (more on that in a future post). I didn’t know anything about the test, or how the results would affect my risks. If you don’t know, the BRCA1 and BRCA2 genes (pronounced [Brack-uh]) in our bodies are tumor suppressor genes – everyone has them. High-risk mutations in these genes, which disable an important DNA repair process, significantly increase someone’s risk of developing breast cancer, ovarian cancer, and certain other cancers.

Three or four weeks later, I was called into the doctors office for the results of my test. Brian (my then-boyfriend, now-husband) came with me for support. I told myself that I already knew the results, that of course it was going to be positive, that I shouldn’t be surprised one bit. But no matter how much you pretend to convince yourself of your fate, it’s impossible to fully comprehend the weight of the situation until it smashes you in the face. The words “positive deleterious mutation” knocked the wind out of me. I cried immediately. I cried a lot out of fear… I cried more out of anger… I cried at the thought of the guilt my mom would have felt if she were alive to hear what she had passed on to me… I cried harder thinking about my father, would he be destined to watch his only daughter suffer the same fate as his wife?… I cried for Brian who sat with me, hand in mine, bright eyed and optimistic, who had no idea what he was getting into.

Women in the general population have about an 8% chance of developing breast cancer and less than 2% chance of developing ovarian cancer. The doctor looked at me from across his desk and told me that I had a 85-90% chance of developing breast cancer and a 40-60% chance of developing ovarian cancer. All before the age of 50.

The pin had been officially pulled and my grenade was armed… it would detonate, I just didn’t know when.

The “prescription” for my diagnosis was either removing the body parts that seemed so badly to want to kill me, or highly monitored surveillance – it sounded to me like something out of a goddamn Alex Cross novel. Even though the procedure could dramatically reduce my risk of developing cancer, at that time the removal of my perfectly healthy breasts didn’t appeal to me, for hopefully obvious reasons. So I began getting mammograms and breast MRIs at age 25, alternating the tests every six months, along with supplemental blood tests to watch my cancer “markers”. Each test was paralyzing – every single time I walked in the door I thought to myself, “This is it, today is the day”. I would go over in my head what I would say when they told me that they had found something. Would I cry? Would I scream? I pictured myself bald and sick. I thought about how I would tell my dad and my brother. I thought about Brian and what this would do to him. The relief of negative test results would only last a few days, then I’d start worrying all over again. What if something developed in the months between my tests, what if it’s too late? What if they missed something? What’s the point of all of this if I’m just going to die anyway? This mutation and its corresponding paranoia had taken hold of my mind and my life…

I thought about my mom, and the look in her eye when she grabbed me that day. She was telling me all I needed to know without uttering a word. For peace of mind. To DO something. To have a say in my own life. On June 10th, 2015, I will be undergoing a non-nipple-sparing prophylactic bilateral mastectomy with reconstruction.

I will be taking BRCA control.