Welcome to our new Blog series, Beyond the Boobers!, Stories of Support. We begin with The Mammosphere, reflections from one of our Boobers! as she shares some of the feelings and fears that persist after the initial treatments are over. As we know, our Boobers! don’t walk through the Mammosphere alone, and friends, family members, and caregivers also are confronted with their own challenges when facing the disease. The stories that follow expose the experiences of caregivers based on interviews our blogger conducted with a variety of individuals who have helped love our Boobers! through breast cancer.
By Becca Ostman
As I stroll leisurely through the doors to the Breast Center, the stark contrast of my current self, to the me that walked in here almost three years ago, is overwhelming. I barely remember that scared little girl, shaking, nearly crying, touching my lump every 30 seconds hoping to find it gone so I could cancel the appointment and run out. If I met her today, oh the things we would talk about! So many things I would share with her, warn her about, comfort her on. But today, I’m not that girl. That girl was shipped off with my right breast to pathology in a biohazard bag.
I’m a different woman now, a phoenix, a recreation arisen from the ashes of my cancer journey. I’m confident, armor plated, irreverently fearless. The results of this mammogram don’t matter because I’ve done it before and I could do it again. I know what “you have cancer” sounds like, and what follows it, so the thought of hearing “you have cancer again” isn’t scary. I liken it to going in for an oil change and being told I need a new transmission. Ok, well get on with the repairs then.
The Waiting Room: “I can’t bite my tongue on her crappy sales pitch.”
In the main waiting room, I chat with the other women. The front desk lady says I don’t have to fill anything out, they have all my info. The women waiting, filling out their endless forms, look up, perplexed as to why. I joke that “I have a cancer fast pass past the paperwork. It’s like Disney, but the rides are less fun.” Their faces relax just a bit, their shoulders slip down, they seem to breathe a little deeper. They smile and giggle at my off-color humor and flippant joke.
One woman asks the front desk lady if she needs 3D mammography as she encounters a form about it. The lady says, “It’s an additional diagnostic tool, it’s optional and insurance doesn’t cover it.” I can’t bite my tongue on her crappy sales pitch. Post-cancer Me KNOWS the correct answer to her question. This Me isn’t sitting there agreeing to whatever the nice people in scrubs say because they HAVE to be leading me in the right direction, right? I tell her how 3D can see things that regular mammo can’t. I tell her how my own tumor could be seen from across the room through my shirt like a third boob, but did not appear on a mammogram or ultrasound. I tell her that good old-fashioned self-inspection is still a monthly must do, but 3D mammo has been shown to detect tumors that regular mammo can’t and it is very proactive and worth it if she can afford it.
As I’m saying all this, my arm flies up involuntarily like a breast cancer info-puppet on a string and demonstrates good self-exam technique. She tells the front desk girl she has changed her mind, she wants 3D. The lady next to her mentions that she does her monthly self-exams and every time she hits her pace maker, she freaks for a second. I tell her I have the same reaction to my scar tissue sometimes, but congratulate her on doing the self-exams monthly. They call my name and I wish them luck. As I walk to the next corral, I say a silent prayer that the one lady's 3D is clean and the other lady always finds only her pacemaker.
The Inner Waiting Room: “Her eyes are bleeding unadulterated terror.”
I walk into the inner waiting room. I know where the lockers are, where to change. I don’t really hear the instructions from my escort nurse, because I am already scanning the faces of the other girls. I change, barely wrap my gown around me; keep my phone in my pocket, despite knowing I’m not supposed to. I lock up my stuff and sit down.
A soap opera plays on the TV as always, which annoys me, as always. Why play a TV show that overdramatizes EVERYTHING while a room full of scared women wait to hear if they have suspicious breast tissue? I wish I could put on animal planet or something relaxing for them. It is a silent room as usual. I smile chat with two women close to me until they mention Chinese food. I joke that they made me hungry. One says she is headed home to “eat the fridge.” I pipe up and say “fresh veggies and hormone free meat only right? It prevents cancer!” I realize I sound like an overbearing health food infomercial. But maybe they will do some Googling.
Two 20- and 30-something ladies sit in the corner, arms folded, scrutinizing their shoes. I know that posture. This is not a preventative mammo. They are here to further investigate something. I smile at them knowingly. There are a zillion things I want to say, but now is not the time. I wonder if I will see them at a meeting in the coming months, if they will pick up a Beyond Boobs! rack card on the way out. I hope not.
My own posture is relaxed. I stretch out sideways on a couch, like I live there, feet up, annoying one of the nurses. A new lady checks in. I see her face not register anything her nurse escort says, not because she is comfortable like me but because her eyes are bleeding unadulterated terror and all she can look at is the other women waiting. Her nurse scuttles off to get the next woman and the new patient stumbles around trying to remember what the nurse said. I get her a locker key and open the changing room door for her. “You can change in here,” I say, “then lock up your stuff and come join the party with us.” She finally exhales; I can see she feels a bit less alone despite the six other women here. Another woman's name is called. It shakes the magazine right out of her hand. She goes to pick it up and I grab it saying, “I got you” with a wink. She smiles. I got you. I wish. I can’t get her anything to make this suck less.
Let the Pancaking Begin: “I feel tough, like a warrior, a soldier.”
They call me back. Everyone looks to my face; to know what to feel when their own name is called. I panic and buckle under the pressure. I fall back on what I always fall back on in this situation: inappropriate humor. “Let the pancaking begin,” I say with a confident smile, and storm through the doors like I have an “S” on my chest and a cape trailing behind me. I have no idea if this was comforting or scary to them, but it was all I could muster.
In the room, I am checked in by a sweet little lady whose long dead parents’ anniversary and my birthday share a date. This is enough for bonding and we banter. She seemed shocked by my calm demeanor. I see this in her expression and say it doesn't matter what you find today, because I'm getting the left one lopped off anyway prophylactically in September. She looks shocked for a second, then smiles. Thankfully, she understands my unorthodox breast cancer humor. We go through my history, the usual questions that I should be able to answer instantly, yet I stumble around them. Unlike most survivors, I don't know all my dates off the top of my head because of my faulty stroke/chemo brain. I ball park my dates, since I know they don't matter that much anyway. I jokingly tell her not to pop my implant as she readies the mammo machine, my “funny” propelling me onward. We both laugh.
Then the fun begins. I am thankful for the numbness in the front of my breast, but my ridge of scar tissue hurts as she takes the pictures, even though I can tell she isn’t squishing me as much as she should. I wonder if she sees me as fragile and get indignant for a split second, followed by feeling thankful. My chin keeps getting in the way, because I am protective and I want to see what is happening to my body. I want to watch as the machine closes down on it to be sure it stops; to be sure she doesn't hurt me. She tells me I have to look away to get good pictures. She is nice so I choose to trust her and I look at the ceiling art, keeping my chin out of the way. We take four pictures, chit chatting between shots.
She politely asked if she can ask why I'm having a second a second mastectomy. These types of questions always amuse me, because she has effectively already asked. I tell her that it was recommended in the first place to remove both breasts, but that my partner at the time talked me into keeping one for the sake of our relationship, and then left me during chemo. She feels bad for asking the question and apologizes for dredging that up. I tell her it is OK and not to feel bad. I tell her it has made me stronger and now I'm making the right decision; the best decision for my breast health. I explain how I thought I would become very attached to my real breast and grow to hate my reconstructed breast, but that the opposite happened. I am protective of my reconstructed breast and completely emotionally detached from my real one. I see it as a bomb strapped to my chest, a disaster waiting to happen. I share that removing it is the right decision to lower my chances of recurrence. She looks at me for a split second like I have just said I plan to amputate my leg because my toe hurts, but then says “Good for you, girl, good for you,” as it fully processes. I feel tough, like a warrior, a soldier. I take a cell phone picture of the four shots, so I can self-diagnose in the waiting room. She tells me to go have a seat and she will let me know when I can go.
In the Lobster Tank
After sitting down, I immediately open my picture and start searching for anomalies. After two years of being a survivor, I'm pretty good at reading a mammogram. The first and second shots look okay. The third makes me a little nervous and I zoom in and out a lot. There are some spots I'm not very comfortable with. The fourth is just fuzzy. I start to wonder if there will be a retake. I noticed the other women watching me analyze the photo on my phone. I can see them longing for whatever knowledge I have that allows me to have an inkling of what to look for. I want to tell them what I'm doing and why, but I know it is inappropriate. I don’t want to scare them or encourage them to play doctor, so I stow my phone and smile a compassionate smile.
The women in the waiting room in the short time I was being mammoed are all different than the ones who were there when I was called back for my pictures. The turnover and a half an hour's time is astounding to me. I have the abstract thought of lobsters in a tank and wonder if they think what we think when the lobster next to them is plucked out. The woman closest to me has the most scared expression I have seen today. I wonder if she has been called back for a second set of pictures or gotten the ambiguous letter that says the first results were inconclusive and to return for more screening or an ultrasound. I start to get a little nervous myself. The nurse had informed me that my doctor ordered immediate diagnostics on my images, so I know that a radiologist is back there scrutinizing the same dark spot that I am as I sit in the waiting room with the other lobsters. My nurse pops through the doorway like a groundhog popping out of a hole, bright and cheery, and says, “Come on back, Ms. Ostman, we're going to take another shot.”
Another Shot: “Suddenly, I’m the Panicked Girl.”
The lump in the throat is instant. My jaw clenches. My arms fold instinctively. We are suddenly not old friends. The gown that has draped on me like an unnecessary jacket all morning, barely hiding the bumps I loosely view as breasts, I suddenly tied in a knot and a bow, as if to say, you're not getting in this fortress lady. Not to my nurse, but to cancer. She escorts me into the room and asks if my mastectomy is already scheduled, I answer, “Not yet, I am planning for September unless these pictures necessitate it being earlier than that.”
She realizes I know exactly what is going on and cuts the crap. She tells me it is nothing like that and not to worry. She says she is sorry, but she is going to have to pinch harder because the scar tissue and implant are making it hard to read the third shot. I immediately eyeball the orders on the clipboard. She sees this and slides it to the far table. I begin strategically planning the moment I will take a peek at them when she isn’t looking. The breast cancer journey has taught me to get all the information I can no matter how it must be obtained. I have the tenacity of an FBI agent when it comes to my breast health. Beyond Boobs! has taught me to be observant, to gather intel, to question, to be aware. So I transform into a CIA operative instead of a frightened woman with her breast smooshed between two glass plates. She takes her shot; I cuss a little at the pain, and then walk over behind her, inching closer to the clipboard. She asks to see the screen shot I took on my phone earlier, saying, “who knew this would come in handy.” I show it to her and she compares shot #3 to the new shot and says, “Ok, just wanted to be sure we got everything I needed.” I don’t have time to watch her and see much on the clipboard other than the words, “continue screening.” This is no comfort and I silently curse my outdated contact lenses.
She escorts me to the holding tank again and I have no earthly idea what to conclude from the scraps of intel I have gathered. Suddenly, I am the panicked girl out there looking to other women for comfort, comfort that does not come as they stare back in equivalent blank fear. I lose track of time but begin memorizing the dirt spots on my shoes, arms folded, jaw clenched. How quickly I look like my pre-cancer self, how quickly the mighty phoenix, the Iron Boober!, shrinks into the chair in a puddle of worry.
Eventually my sweet nurse groundhogs out and says cheerfully, “Ok, Ms. Ostman, you are all set.” I say “thanks” way too chipper, like I have won a fruit basket. As we both exit in opposite directions, I know we both are aware that neither of us has a clue what either of us really meant, but that is how the game is played. Did her heart sink as she closed the door behind her, knowing I will get a call for an ultrasound? Or did she breathe a sigh of relief and smile, knowing I will share many more birthdays with her dead parents’ anniversary and my surgery will go as planned in September? Is she wondering if I bought it, and am strolling out into the sunshine to enjoy my day? Or does she know that I didn’t and I’m going to be a hot mess until I get my letter or call? Could the women watching tell anything from our exchange? This is the role we both must play, like spies, her betraying nothing to me or our audience of patients, I betraying nothing for the women looking to me as a confident survivor.
The Heart of a Boober!
It is different for all of us based on our situation when we step out into the hot sun after the sterile air conditioning of the mammography waiting room. But as Boobers!, no matter what we walk away with, we know we are not alone. And the more Beyond Boobs! grows, the more we know that women will KNOW where to turn if they walk out of their Breast Center with bad news.
I go to my car and back inside to top off the rack cards in the waiting room about BB! before I leave. This is one of my jobs for Beyond Boobs!, to keep our information in the offices at the Breast Centers.
As the automatic glass doors open, I see the scared 20-something woman exiting, with a few silent tears on her cheek, but a strong determined expression on her face. She has a “What Now?” Beyond Boobs! rack card in her hand and sees the refill stack of them in mine. I smile the best I’m there for you smile I can muster and say, “I hope to see you soon.” She smiles back, but does not slow her gait. I don’t press.
As soon as the glass doors close behind me, I lose it completely for her. But I know as I cry and restock the cards, why we do what we do, why we spend our time in this way. And I know that this time spent, just like my pending second mastectomy, is without question, the right decision.