Survivor-hood Truths
Once a breast cancer diagnosis and the treatments that follow have pressed their marks upon your body… once the chokehold from fear has found its fingers around your neck, forcing you to hold your breath long enough for cancer to decide if you get to live or die…once your bruised and maimed flesh has felt that disconcerting pierce and rupture of your sense of safety…once your ‘street fight’ has come to an end and you wipe the blood from your bottom lip and rise with your fatigued body and mind to greet the promise of tomorrow…once you’ve rung those melodious bells of victory and hope…once you’ve graduated to ‘survivor-hood’ and your newly polished diploma hangs proudly on your shirt sleeve…once this has happened, you are done. Right?
Oh, this is but the beginning…on so many fronts! Well, here’s my best attempt to peel back that thin, pink, gossamer graduation gown that so many survivors fear they must hide behind. If we can rip away the distorted image of what survivor-hood should look like and expose its true identity instead, then perhaps we can really help our wounded pink warriors. Perhaps then, our mothers, sisters, wives, and daughters of tomorrow can learn to live their best lives possible after graduation day has long come and gone.
We need to craft a sense of safety and unity and shine a light past the shelled semblance of our half-truths. You see, we can’t slay the beast if we don’t know the many faces and shapes that it takes in the first place. So, here it is…as honest and authentic…and freaking vulnerable as I can make it. Inhale. Exhale.
Cancer is a freakin’ bitch. There’s absolutely no doubt that the long, arduous road from diagnosis to survivor-hood is both exhausting and emotional. It takes a toll on our bodies and souls. That’s really not much of a secret, now is it? And once we pass the threshold and enter into survivor-hood, a new dawn has arrived. We’re elated. We’re relieved. We’re overcome with gratitude and peace, and we kick off a dance party with our new best-bud: Joy. Again, no surprise; and our support network and society applaud and toast alongside us with excitement and pride. We did it!
But wait, why is Fear still hanging around? He isn’t running around like a crazy person raising havoc like he did yesterday, but he stands in the corner all the same. Damn him! Fear hasn’t vanished; rather, he lingers in the shadows, waiting for a trigger to gift him the reins. Triggers inevitably come too. A song plays, a follow-up appointment is required, a daily dose of hormone inhibitors is taken, a memory from your former self, a glance in the mirror….something reminds you of the trauma you faced; and emotions begin to swarm and bubble up towards their barriers. However, this time when emotions rock your foundation…this time as a survivor…it’s different! You feel like you must quickly snuff the negative emotions out. How dare you feel this way!
You are healed, after all. You’re a survivor. You’re to wear pretty pink and smiles and be grateful that you made it, for you know that many of your sisters along the way did not. You are happy, truly…you are! You are hopeful and determined and renewed with a sense of purpose. Yet, beneath the gossamer gown is a world that you never saw coming. There lies the truth of survivor-hood; and although it owns the pink smiles and laughter, there’s a darkness too. But to compound matters, you don’t feel that you have the right to feel anything less than happy. How dare you! Whining and complaining is not becoming of someone who just won their game of chess, so the pressure is on: don’t fucking complain. This is when many survivors seal up their doors and conceal the truth within. I can’t feel this way! I shouldn’t feel this way! Stop feeling this way! Something is wrong with me for feeling this way, but….shhhhhhhh. Don’t say anything.
How can we claim to have survived breast cancer when we’re suffering its legacy in silence? Sadly, many survivors feel that they are alone in these conflicting emotions; so, they grieve alone, afraid to reach out and admit any of it. However, if the world doesn’t know this clandestine truth to survivor-hood, and if survivors don’t even know that what they’re experiencing is normal, then how can we move forward and make the world better for them? What kind of services and aide can we offer as a society if we don’t even let on that there’s a need? I’ve interviewed dozens of women; and every single survivor confided in me these hidden truths.
We are happy; but we’re sad too. We’re hopeful, but often times feel helpless and lost at the same time. We grieve for the person we once were. We got to live, however, the person who we were prior to this trauma has in many ways died; and we miss her terribly. The innocence and free-loving days prior to the entanglement of fear begin to piss us off. The loss of who we were summons Anger. The fear of recurrence, the shattering of our sense of safety, revs up our anxiety. We may cry for seemingly no reason….oh, but there’s a reason. We’ve just buried it because there seems to be this assumption that pink is the new pretty; and we don’t want to disappoint or burden our support system any further.
Here’s the truth; and keep in mind that there are varying degrees and hues from one survivor to the next. If we’re a survivor, we have lived through Hell and come out on the other side with scars you can’t always see. Every one of us has an emotional wound that accompanies the physical marks we’ve collected. No matter the diagnosis (DCIS all the way up the gambit), if we’ve had cancer, we’ve felt these things.
Dying
Dying. The fear of no longer existing, of leaving our families behind, of not getting to achieve the things we’ve wanted in life…it’s hard to calm that, damn near impossible to do it…even well past the ringing of those bells.
Memories and Flash backs
Memories and flash backs. For a long time, something would trigger me and send me straight back to the operating room. I could see the table, the lights, the sharp flesh splicing instruments there on the side. I could feel them tightening the seatbelt, ensuring that I stayed in place; and I could sense my nerves climbing to their highest height and accelerating my heartbeat while on the rise. I couldn’t stop it. Once triggered, these memories would play on a continuous loop; and I’d panic…not knowing how to escape them. Yet they were only memories; they couldn’t hurt me…right? Still I’d panic all the same and hide it with a smile because I had survived after all.
Physical Changes
Physical changes. This of course varies from person to person; yet undeniable physical changes are there all the same. Some have neuropathy, which is basically nerve damage. Depending on where and how it hits, they can lose feeling in parts of their body. Lymphodema is another trial some experience. It’s caused when the loss of lymph nodes in surgery make it difficult for the lymphatic system to do its job properly, and the swelling of one’s hand/arm results. There isn’t a cure for it; and from what I’m told, it’s painful.
So, if you skate clear of those two ailments you’re fine right? Well, no. We may act like it; but there are still untended wounds. Some women have lopsided breasts that trigger insecurities; some who’ve had a mastectomy and reconstruction can no longer feel the sensation of their own touch. Some of us hate our scars and fight with our self-esteem and body image. After all, we waited our whole adolescent lives to grow our breast, and now they’re (in some ways) gone. That can be depressing.
I’m one that loves my scars. They’re marks placed on my body that show that I was stronger than whatever tried to take me down. Therefore, I should never feel sorrow when I see them! Right? Oh, but I do too. I do because I miss the old me. I love and embrace my new body, but I grieve too. I have after all, lost part of me; and that IS sad.
Oh but wait, there’s more. For those of us who have to take hormone therapy (either tamoxifen for 10 years or anastrozole for 5), we can experience a slew of side effects that accompany that damn pill….not to mention the daily emotional reminder that cancer will forever be part of our lives.
Physically, my body aches. Y’all, my bones hurt! When I rise from sitting too long, I cannot unfold like I used to. My 37 year old body moves like an 82 year old until I shake the kinks. Do I still run? Yes. I’m even trying yoga (I suck at it, but that’s beside the point. I show up to the mat anyhow). Still, there’s aches and pains that I didn’t have before; and I hate that!
Menopause
Menopause. Oh how lucky we are! Often times treatment can induce medically onset menopause. We have hot flashes, night sweats, mood swings (I don’t understand that part… because from my perspective, I’m delightful….my husband may be able to weigh in more on that…but…).
Infertility
Infertility. Some treatments can cause infertility, which can be yet another layer of heartache and trauma for a cancer warrior. But, you can’t be sad…or at least you feel like you have no right to show it because you survived the unthinkable, right? You should be fine.
Uncovered truths and our reactions
I hesitate to lay these truths out there because I don’t want them to discourage a breast cancer fighter. I do, however, believe that knowledge is empowering; and we can weave an incredible support system once we’re honest and communicate these truths. Women fighting, women surviving… you are not alone!
These hidden truths have hit, in some fashion or another, every diagnosed woman that I’ve spoken to. People just handle it differently. Because we have the added pressure placed upon ourselves (either by our own hands or by a well-intending loved-one) of “you’ve survived, so get over it already”, we can react in one of several ways.
Do you remember Elsa and her parent’s advice: “conceal, don’t feel?” How’d that work out for her? It didn’t. All the emotions got buried, until she couldn’t hold it back anymore. Same thing here! Some of us try to stuff it so far down, bury it deep, because we shouldn’t…we couldn’t…feel bad. We survived. We were lucky. How dare we be less than happy!
Others block it. They armor up by staying insanely busy – using distractions as their new coping mechanism. Others armor with smiles and humor. Does that mean that our smiles are fake? No! But, there’s likely much more brewing beneath the surface than one may realize too.
Still, some people have a real hard time focusing on anything else. They turn inward and retreat from people and the life that they once knew. They can sink into depression and not know the way out.
These strategies may be different, but there is an underlying truth. Survivor-hood becomes our newest experience, we are happy…but we are terrified too. We are wounded and often times feel the pressure to suppress it. Physical and emotional wounds do not disappear at the dawning of survivor-hood. Rather, we must learn to accept them and navigate our new normal. That’s not easy.
What can we do?
What can we do? What can you as a survivor or as a caretaker do? First of all, recognize that you are not alone; your loved one is not alone. This is happening across the board; just many refuse to speak it publically out of insecurities or shame. So, rip off the Band-Aid. Don’t hide behind the pink graduation gown. Be vulnerable with your loved ones; be authentic and know that there is room in your life to be human…to experience the good and the bad. Tell yourself that this is your body, your mind, and your soul. All of it! The happiness and gratefulness combined with the fear and the grief. Own it! Own all of it! Then, spread the word so that the next woman and the next family will be all the wiser. They’ll know these truths are normal. Then, we can collectively move forward with acceptance and change. Again, we can’t fight this face of cancer when we bury our heads and seal it away in attempts to deny its existence. It exists! Let’s address it!
We can better meet the needs of our pink heroes when we know the demons they’re often facing in silence. So, use your voice and speak. Authenticity will nurture connection; and connection and compassion will stimulate change. Look for resources in your area; reach out to other survivors; speak with a therapist; confide in your loved ones; just don’t assume you’re alone and don’t bottle it up. Instead, heal!! Let your mind, body, and soul heal completely by being authentic and reaching out!