The Pink Ribbon is Not My Whole Story

Walking in, I feel the code-shifting begin. There is a drop in my stomach, and my armor goes up when I push the wooden door open. Each step into the waiting room feels like walking deeper into a truth I keep trying to avoid. My oncology appointments are the only part of my 2015 diagnoses that I can’t run from, no matter how much I try to disassociate myself from it.

At the age of 35, I was told I had breast cancer. Receiving such heavy information is more than devastating to hear, but I remember that day vividly, being alone when my breast specialist accidentally told me.  She was speaking to me as if I had already heard the news. Another thing my primary care doctor had dropped the ball on.  I was confused about what she was talking about.  I never heard the words slip from her lips, so I stopped her and asked, “ What are you talking about?” She stops and says, “Oh, I'm sorry, did your doctor not let you know?” “Did they not go over the results with you?”  Of course, they didn't. I had already had my feelings about my PCP.  Damned,  this just confirmed the F---s I had already felt about my primary care doctor, and how the health care in general doesn’t give a sh-- about their patients.   

I remember feeling my body shift into go mode as I pushed down the frustration, hurt, fear, and sadness my body was dancing with. The next feeling was that this wouldn't break me or deflate my passions.   I wasn't going to allow this to label me as weak or let others see the weaker side of me. Leaving the office, I cried.  I remember feeling confused and upset in the circumstances I found myself in, and what this might mean for the ambition I carried for life. Knowing my life was still valuable and there were significant things to accomplish, I felt that in my bones; that's when my learned skill of safeguarding my identity, which I had developed from childhood,  became its most powerful.  I had no clue of the vast, conflicting shift I was about to go through from just hearing a few words. Oblivion to the much bigger picture that was beginning to unfold for me, moving forward and not allowing myself to be part of the pity box, was the only way I knew I was going to survive this. You can't get s--- done crying over spilled milk. I can't change the past, so moving forward and avoiding anything that puts me in that box is the only way I know to get through this.  

 Under the roof of my oncology office, my wounds manage to bleed a little.  It's hard not to walk in and not feel the cuts open, even the little ones. The place where I had to sit for four to five hours of six rounds of chemo, and now check-ins every six months.  The softer side can't hide once I walk in, so I transform those emotions into a steel shield of self-advocacy. It’s how I protect myself from fully feeling the fears and uncertainty that sit at the back of my mind. It’s not denial. I see it as looking out for myself, finding ways to cope with the problem.  Walking up to the counter to check in for my 10:00 am appointment, I feel eyes staring at me with condolence.  When I turn around, those eyes vanish, pretending my age hadn't stirred quiet questions in their minds. With confidence, I head to the empty row of chairs that sit back-to-back in the center like a game of musical chairs, and claim the seat at the end, away from everyone else, alone. 

The room, at a quarter of its capacity, holds strangers who share this weight. Yet I feel mine is different. My soul just doesn't resonate with the identity people project onto someone with cancer.  I have never allowed failure or hardship to get the best of me, and this was no different. When someone says to me, “Oh, you're a survior”, or I see the pink ribbons, a piece of me curls inside. It's as if a weaker narrative has already been told for me. People assume cancer stops you from wanting to achieve so hard, let alone at all, that it gives us an excuse to lack. It doesn’t. It’s just something I had to learn to co-exist with. 

I had a person come to me and say, “I am so sorry, I didn’t know you were sick.” I wanted to say, “Well, hell, me either”. Was I supposed to feel a certain way?  Being in a pity box doesn’t feel good. I feel diminished because they choose to assume rather than know who I truly am. Why can’t I be a person dealing with normal life struggles? Why does cancer have to be such a fragile glass that people are scared to hold? 

Co-existing with cancer is emotionally exhausting. But people don’t think about the whirlwind of private thoughts that swirl in my mind. They reduce people like me to caricatures. Dehumazing us. Erasing our agency. But what they never see are the vulnerabilities within me. I'm just surviving, not a survior. And surviving looks like advocating for myself because there isn’t anyone by my side to share the weight. Comforting my haunted bed where the silence is the loudest, making sure my girls don’t miss a beat in their daily lives, and not letting my business fall through the cracks. All while carrying the anchor that cancer adds to my life. For someone dealing with the many things I have on my plate, you’d think coming into what should be a sacred place, would see me, really see me,  and support me, and hold my pain and fears. 

I’m called back to the other side of the door, where my identity dissipates like evaporated water. It’s always the same nurse who calls my name. Her eyes always look withdrawn, and her solid frame somehow disengaged. Every six months,  she takes my vitals, guides me to the same scale that reminds me of the cruel side effects from the estrogen blocker I took for five years. Her voice comes, smileless, flat, and aloof in my presence. It’s disheartening how little patient morale matters in her care. Daily, she sees cancer patients, so maybe she doesn’t like being surrounded by the likes of me every day; maybe it's depressing for her. But how did that become more paramount to the care I deserve?  Her dry hi’s make me feel like I wish she’d said nothing at all.  Her demeanor always makes me feel like I am a burden. Small.  Just a chart. My name repeatedly etched in her mind, and hers indefinite. This kind of betrayal of my vulnerability is very real and inescapable.  

Alone,  waiting for the doctor to come into the exam room. I prepare myself for a conversation I know won't end in what I want, but I have to try. My biggest fear is it coming back. Not that I got it, or all the effects that go with it. It's the silent robbery that could happen again at any moment. I am definitely positive, and I am not wishing for it to appear, but I am also realistic and practical.   I’ve been in remission now for ten years, and it doesn’t mean I beat it, or I’m done. I think this is why the survior label bothers me. I am still fighting.  By managing my health the best i can, blindly at times, hoping I’m doing everything right. However, I had no idea the psychological mind f--- it would do to my subconscious. Constantly worrying if I made it another year in the clear. So, on this visit, I wanted to ask again if I could have a PET Scan.

 In 2015, the matchless breast specialist had caught the tumor six months prior. I was in my closet changing my clothes, and I noticed that for about a week or so, when i took my bra off, I had a spec of blood in my bra each time. On this day, I decided to squeeze my nipple because after examining my skin around my breast, there was no open wound. Sure enough, after one squeeze, a drop of blood leaks out of my nipple like breast milk. I called my best friend to the closet, and we determined that this wasn’t supposed to happen. After many tests, the doctor couldn’t figure out what was happening and told me she was going to remove the milk duct that was now making the sheets of my bed look like a murder scene. Post surgery, she informed me she saw some abnormal cells, and advised me to get a mammogram in six months, which is when it became visible.  Stage one, perfect! My only thought was, let’s remove the breast, and let's get back to life. 

Advocating for myself, in a room with someone who makes the unlimited decisions about my health, can be both depleting and defeating, but I ask anyway. The doctor's response was hollow, leaving me feeling clouded. I knew it was going to be a no, but what I didn’t expect was the lack of compassion and sincerity that slapped me in the face. Her first response was, “If you're worried about it coming back, then you should stay on the medication.” I had chosen to stop the estrogen blockers at the recommended five-year mark, instead of going to ten, because of the effects it was putting on my body. This was the one thing I couldn’t keep doing.  The weight gain, the pain and stiffness of my joints, and other side effects were morphing my body into something I didn’t recognize, and I  couldn’t allow myself to go through again. I was forty-three, still young, with life ahead of me.  This wasn’t going to age me or weaken me for another five years. I refused. She knew this, and to still say this in an apathetic tone was cruel, as if she were dismissing my journey and the one ahead. 

The gut-punching response came when the educated, licensed professional said, with authority and credentials, “If you take the test and it comes back negative, then it was for nothing!” For nothing.  Frozen. For nothing, that was all I heard. Like my peace, me wanting to live, my life means nothing.  Defeated,  wordlessly, there was no need to say anything else. I couldn’t; I was in shock. Just baffled, I went quiet with a loud attitude and let the appointment finish. 

I have had two PET scans, and both came from the one person I knew who saw me, who cared, who gave me her phone number in case I needed a call. Who I knew by her first and last name, the one who understood me and would tell me, "Yes." The remarkable Dr. Amirikia. Unfortunately, at the last visit, she told me there wasn’t a real medical reason for her to keep seeing me. At this point, I was keeping yearly appointments with her just to make sure I stayed on her current client list. Having a doctor who cared, even if she was just a specialist, was more than what I had, and I didn’t want to let her go. So, since there wasn't any complication from the surgery that would keep me in her care, I had to embrace the undeniable truth and accept the third no from my altruistic oncologist. I am sure there is a reason why the answer is always no, that isn’t my gripe. The unwillingness to see me as a person, as they do their family and friends, whom they champion with the same condition, is the level of compassion I ask for.  Why are good caregivers rare and hard to find?

 With this question out of reach, my  longing for attentiveness, and comfort sits on my vision board, framed. A sacred  place where protecting my identity and fears wouldn't have to be mine alone.