Today was Pink Out for Breast Cancer Awareness day at my school.
I didn’t wear pink. Instead, I wore one of my Stand Up to Cancer t-shirts. It’s orange and white and gray. It’s pretty much the antithesis of the bright pink of breast cancer.
I came thisclose to wearing my black and blue wig. If my wigs weren’t still in storage, I would’ve.
Look, I understand that for many, the Pinktober and all the pink gives them hope, fills them with emotion, and unites them. I get it. I really do.
I’m just not one of them. I hate the sight of the pink ribbon. My 12 year old daughter can’t stand the color pink or the pink ribbon.
It’s painful for me, for us.
It’s a reminder that breast cancer puts my life at risk every single day. It’s a trigger for me, and I don’t say that lightly. My oncologist is pushing through a referral to a Baylor Dallas psychologist who deals solely with those who have been diagnosed with breast cancer because for the two weeks leading up to my 3-month checkup, I became so anxious and scared it truly affected my quality of life. Both Dr. O and Dr. H, who I see next week for my six month check up with her, see symptoms of PTSD in me. I can’t put into words how awful that makes me feel about myself -cancer and severe anxiety? Yet, I’m supposed to revere the pink ribbon and celebrate Pinktober…Are you kidding me?
I live with breast cancer and its aftermath every single day. I consistently return to places that are painful -Sammons and Methodist. I have had literal panic attacks stepping out of the elevator to the 4th floor of the Sammons building. I have sobbed stepping into Dr. H’s office. I guess that makes me weak, the fact I can’t get over the fact I had breast cancer. That I became a pre existing condition. That I became a liability. That I became a statistic.
So, in all sincerity, forgive me for my inability to participate in pink outs, to see good in the pink ribbon, or to celebrate Pinktober.
*This is a raw post. I wrote this on Sept. 28, 2017. I published it for a little bit, but then I deleted it. I’m posting it now because I’m better with what I wrote.*
Two years ago today, I sat at Baylor Dallas Charles A Sammons Cancer Center from 8:00 am until 7:00 pm undergoing my first of six TCHP chemo treatments. I sat in a private infusion room, thanks to a former student, and I graded essays, pretending I didn’t care that poison dripped into my body as long as the poison killed the other poison growing inside me.
I cared. I was scared. I was terrified. I acted like it didn’t matter. I didn’t want special treatment. I wanted to be normal.
Cancer isn’t normal. Nothing about life with cancer or after cancer is normal, and screw that whole happy, cheery “find a new normal!” Chemo and radiation and surgeries and pills and infusions and constant surveillance check ups should not be normalized.
See, that’s where I get angry about our society and breast cancer. Pinktober approaches where suddenly, everything is pink because we need to be aware of breast cancer. I don’t need a reminder to be aware of breast cancer. I’m a freaking walking human advertisement for breast cancer awareness.
I find it hard to believe anyone in the US is unaware of breast cancer. What I find easy to believe is that few know that 40,000 people die of breast cancer every year. Did you know that number hasn’t changed since Pinktober began? What I find easy to believe is that few know Stage 4 breast cancer’s, the only breast cancer you can die from, research is severely underfunded. Did you know Komen designates little of the money it raises to Stage 4 research? What I find easy to believe is that few know there are many subtypes of breast cancer and treatment options for some subtypes are limited. Did you know there are no immune therapies or targeted therapies for triple negative? What good is awareness of breast cancer if we’re not doing more to fund research, find treatments, and provide support to those with breast cancer?
You want me to be happy I had breast cancer? Have several seats. Over the last two years, I’ve been told I had a good cancer, that I got new breasts out of the deal, that I’ll beat it.
No cancer is good, I was perfectly happy with my real breasts, and what if I don’t? Stop placing unrealistic pressures on those with cancer. It happens to anyone through no fault of their own, and that’s why I despise the battle metaphor of cancer. No one loses to cancer. Cancer isn’t defeated because someone fought harder. Cancer doesn’t look at someone and go “Oh damn, maybe I should’ve picked a different body because this person is tough.” Stop it. It sounds ridiculous because it is ridiculous. The battle metaphor is all about making someone without cancer feel good, feel like they’re being encouraging, feel like they’re being supportive. Ok, fair enough, but look at the other side. If you tell your friend or family member they’re going to beat cancer and they don’t, you really want to put the shame of losing on someone who died from cancer? Really? Few things get to me as a person recovering from breast cancer like Pinktober and the battle metaphor.
I still don’t understand why this happened, what lesson I’m supposed to learn, and why I should be grateful this happened. I’m bitter, I’m anxious, and I’m paranoid because my cancer could come back at anytime no matter what I do. I can take all the medicines, do all the exercises, eat all the healthy food, and it can still come back. So, yeah, I’m not more gracious, I’m not more humble (I’m humbled by my friends and family and the sisterhood of longtime friends and my coworkers because they care about me as a person, not just a person recovering from cancer), and I’m not more patient. I’m not a better person.
I’m none of those things the pink myth of Pinktober perpetrates. That is one of my many failings, I suppose. Or, I guess I just didn’t learn my lesson, something I’ve heard on and off my whole life when I’ve gone in a different direction than the one I was supposed to choose.
Funny thing, though, those choices, those different directions led me to A even though, on the surface, we had little in common, yet he, in very real ways, changed me for the better as much as he says I changed him for the better, and that choice led us to S and AJ. Those choices led me to UNT where I earned both my Bachelor of Arts in English and my Master of Education. Those choices led me into teaching. Those choices led me to my current campus where the love, support, friendship, and sense of family is unmatched.
I think today, knowing today is the day I sat for eight hours receiving TCHP for the first time is the second of the three hardest cancerversaries -the day I got the call, the day I started TCHP, and the day I had my mastectomy.
I’m glad, ecstatic to be NED right now. I want to stay NED. But, I also want more treatments, more research, more support. I’m alive because of the research from the American Cancer Society that led to Herceptin. I’m alive because of the research from Genentech that led to Perjeta. I’m alive because of taxotere created from the bark of the yew tree thanks to the research of Pierre Potier, and I’m alive because Michigan State University discovered carboplatin. Almost all components of my treatment plan were discovered in the last fifteen years. I’m incredibly grateful for their discoveries, but we have to do more.
As Pinktober approaches, I implore you to think before you pink. Ask where the money goes.
Cancer is hard. Fighting it, living with it, living after it. No cancer is easy.
I had no intention of writing half of what I’ve written tonight. I was going to just write that today’s the two year anniversary of my first chemo treatment. But, thinking back on this day two years ago, I remember myself sitting in that infusion chair wearing jeans and a maroon shirt with long hair and grading papers. I remember getting up the next morning and going to work, finding get well cards from my classes. I remember the blinding headache I woke up with, the horrid taste in my mouth, and the strange red rash on my chest. I remember acting normal. I didn’t want pity or sympathy. I just wanted to be.
I guess that’s why it’s hard for me to quantify this cancerversary. Without it, I’d be dead. Because of it, I’m a different person.
My phone rang at 2:20 this afternoon. The screen said Texas Oncology. Today is Tuesday. Today is the day Dr. O would call if something showed up on the scan.
I didn’t like seeing that caller ID on my phone. My heart raced, but I knew it could also be Dr. O’s nurse with referral or medication information. For a split second, I thought of sending the call to voicemail. But, I didn’t. I answered the phone as I walked out of my classroom.
The call was to update me about the referral (it’s in progress). After the nurse finished giving me the update, I told her my first thought was this call had something to do with the scan since today is Tuesday. She went quiet for a minute before saying, “Nope…scan looks good. Nothing on it. We’ll rescan in a year.”
I thanked her, ended the call, and bent over, hands to knees just to breathe for a minute or two. I might have stayed that way longer if not for a junior who saw me in the hall and asked me if I was ok. I plastered on my smile, told her everything was fine, and I went back to my classroom.
I posted my news on Twitter.
I planned my lessons for the next grading cycle.
I came home.
The kids came home.
S did homework.
AJ went to a friend’s house for a bit and then went to karate.
S and I window shopped for Halloween.
I picked up AJ.
We came home.
S drew and watched TV.
The kids said their good nights.
The house grew quiet.
The daily routine of family life, of my life, a daily routine I cherish even when it makes me crazed, a daily routine I would not have without Dr. O and the American Cancer Society (Herceptin).
I have a choice, the same choice I’ve had for over two years: be ruled by my fear or rule my fear.
I’m not sure what’s going to happen. I know, at this moment, I’m profoundly grateful to be stable with no detectable amount of active cancer in my body. I know that could change at any time, or I may remain no evidence of disease for the rest of my life.
I’m not ready to commit to saying I’m done being afraid. I’ve had cancer. One of my nightmares came true. I’m not sure I’ll ever be done being afraid of it. What I can commit to is finding a better way to cope. I deserve that.
No grandiose promises, no unsustainable commitments.
…said Dr. O to me today as I sat with her in the exam room while tears ran down my face.
The good news: my blood work was mostly normal (dehydration and kidney function don’t play well together).
The bad news: I had a wreck as I left the cancer center. I’m fine. My car…not so much. It’s drivable, but the front driver’s side is not ok. As I was leaving the cancer center’s underground garage, I hit a concrete column. I didn’t see it. I wasn’t going fast, so that’s good, but my car is messed up.
I’ll get the results of my scans sometime next week if there’s something to discuss. Otherwise, I go back in 16 weeks…unless…
Dr. O wants me to start on Zometa. She said studies show it significantly decreases the rate of reoccurrence for ER+ cancer. I told her I’ll do whatever I need to do. So, she’s putting in the preauthorization paperwork. When it goes through, if it’s approved, I’ll have Zometa infusions twice a year for the next several years.
We talked about how crippling my anxiety has been for the last two weeks as this appointment crept closer. She said the same thing the cancer counselor said -I’m traumatized from everything I’ve been through over the last two years. She’s putting through another request to my insurance to approve me to see the cancer psychologist at Baylor. Apparently one of the cancer psychologists deals only with breast cancer survivors. Dr. O wants me to see this psychologist. I agreed. Whatever I have to do to be happier and less anxious is worth it.
Dr. O also clarified some things for me. I thought because there was cancer left behind when I had my mastectomy that meant I did not have a complete pathological response (cPr) to TCHP. Googling led me to believe since I did not, as I understood it, have a cPr, my risk of reoccurrence was as high as 60-70%.
I was wrong. Really wrong.
Dr. O told me I did have a cPr to TCHP. None of the HER2 was left. She said that’s a cPr. She said if HER2 had still been there, my after surgery treatment would have been vastly different. Dr. O told me with a cPr from TCHP, the reoccurrence rate could be as low as 5% for the HER2. As for the ER, she said the only other thing, medically, I can do is Zometa. I’m doing everything else.
So, as long as my scans are clear, I’ll see her in 16 weeks and will start Zometa infusions as soon as we get insurance approval.
I felt such relief when I left her office. It lasted for about twenty minutes. Then, my car decided to become friendly with a concrete column. ¯\_(ツ)_/¯
So, now I wait, hoping for no news this coming week since no news means clear scans yet hoping for news in the coming weeks so I can start on Zometa.
I couldn’t have a better oncologist. I’m so grateful Dr. O took me as patient. Tonight, I’m going to bed, and I’m going to sleep peacefully.
I’m melancholy today. I fear what tomorrow might bring, what Dr. O may say. People tell me this will eventually become easier, but honestly, I truly doubt it. How can this ever become easier, this precipice on which I stand? These appointments where my blood is taken, shaken, and tested, where my scarred body is examined, where my insides are xrayed, looking for the uninvited interloper, are not easy. I am anxious and scared. I feel no different than I did twelve weeks ago, yet I felt completely healthy as cancer grew insidiously inside me, so am I truly the best judge if whether I’m fine? My track record says no.
As I walked down one of the hallways at work today, thoughts of cancer and fears of reoccurrence swirling in my mind, a singular thought stopped me, stopped me in the middle of the hallway, stopped me cold.
I believe it’s too late for me.
I’ve waited too long to adjust my lifestyle. I’ve waited too long to get my insomnia under control. I’ve waited too long to lose weight. I’ve waited too long to start doing anything which could keep the cancer at bay beyond the medications I take everyday.
I deeply, truly believe I’ve waited too long, it’s too late.
What a horrible, terrible thought.
It’s not only what I think, though, I realized as I stood in the hallway, alone, this afternoon. It’s what I believe, and truthfully, I’ve believed it from the moment I was diagnosed. I knew long before that fateful August afternoon that I needed to lose weight, eat better, stop drinking 4-6 Coca-Colas a day, exercise, and sleep more. I knew, and I did nothing until I was told I had breast cancer. Even then, I did little. I cut Coca Cola. Chemo helped me lose thirty five pounds. I’ve gained back some of that weight. I drink one or two Dr. Peppers most days. I’ve stopped my evening walks because I’m tired after work. I have a million excuses, a million moments of shame.
I look in the mirror, and I am sad by what I see, pieced back together with other pieces of me. I am sad to see the weight I’ve gained. I am sad to see the scars, more noticeable to me right now than usual. I know it’s anxiety because of my appointment tomorrow. I’m in limbo. I seem to live in limbo lately.
As much as I try to stay away from breast cancer sites, I lurk on a breast cancer community’s message boards. Yesterday, I read a post from a woman at Stage 4 who wrote to others newly diagnosed with the same breast cancer I had, that they should not worry about a reoccurrence. If it comes back, it comes back. The worry did nothing. She wrote if she could go back in time to when she was NED (no evidence of disease), she would enjoy every single one of those days instead of spending them worried about a reoccurrence.
I want to make myself stop worrying and to just enjoy whatever time I have, but I haven’t found a way to do it. Today, in the hallway, I think I discovered why I can’t get there. I believe it’s already too late.
I was healthy until I wasn’t. I didn’t do anything wrong no matter what my scumbag brain tells me. Breast cancer isn’t my fault. I was healthy until I wasn’t.
Why do I have to call my senators and beg them not to vote for something that will allow my insurance company to increase my rates, impose lifetime and annual limits again, or decide I’m too expensive and drop me? Why do I have to call and beg my senators not to kill me?
I need someone to explain to me why the GOP is so heartless. Is it really just money? I’m not worth it because I’m solidly middle class? Because I wasn’t born into a wealthy family? Because I work to serve my community instead of making millions (as if…)? Why am I unworthy? Is it, as some senators have said in interviews, because people like me must have done something wrong to become sick? There but by the grace of God go you if you truly believe it. I was healthy until I wasn’t.
I can’t afford for lifetime and annual limits to return. If they do, my life is worth a whole lot less than security for A, S, and AJ. My children do not deserve to lose their mother, no child does, but more, if my children have to lose me, they do not also deserve to lose their home and financial security because my care would cost so much.
I know what it’s like to grow up with financial instability. My children will not have that experience. I know what it’s like to go through a bankruptcy as a child. My children will not have that experience. The stress, the fear. My children will not have that experience. I will forego treatment because their future means more to me, and let’s face it, if my cancer comes back, that’s the ballgame. I want to live, to see S and AJ become adults. I want to live.
But, I had cancer and have no idea what’s in front of me.
I was healthy on August 1, 2015. Yes, I suspected something wasn’t right, but suspicions can be wrong. I wish mine was. I was healthy until I had cancer on August 27, 2015.
I call my senators’ offices nearly everyday. I tell my story over and over. It falls deaf on my senators’ ears. Yesterday, I asked the young man who answered the phone at Senator Cruz’s why Senator Cruz seems to hate constituents like me. I’ve asked the same question of the young men who have answered the phone at Senator Cornyn’s office. I always get the answer that neither senator hates constituents like me but cannot respond to how else people like me are to view votes for bills that could become our death sentence.
I’m tired of begging Republicans not to vote for something that could become my death certificate. I’m tired of being viewed with both pity and derision by people who are healthy, by Republicans. I was healthy until I wasn’t.
Last night, A sat with me for an hour as I sobbed about how scared I am the cancer is back even though I feel no different than I did 12 weeks ago. I didn’t feel sick on August 26, 2015.
But, I was.
A sat with me, let me cry, offered no platitudes. He listened to me fear the cancer, confess how ugly I feel, relate my shame for gaining weight, and despair for my future. Once I talked myself out, A talked about his day, how much he enjoys his new job, and the minutiae of his day. He soothed. Then, he scolded.
I woke up steadier today. But, I’m still sad, so sad, that so many view my life as less, view me as less.
I hope those who support this deathcare movement, this abomination of a bill never feel the way I feel because of them -less, ashamed, terrified. I hope they never have to face a family member or friend whose life they’ve put in danger. I hope they find the compassion they’re missing. I hope the almighty dollar becomes less important to them. I hope they find their humanity and humility.
The arrogance of those who believe they will never be affected by this healthcare proposal astounds me. This will affect everyone in some way.
Once upon a time, I was arrogant about cancer, especially breast cancer. I truly believed I would never have it, but if I did, it would be when I was much older. I truly believed I wouldn’t fear the pink ribbon, Pinktober, and Pink Outs. I truly believed my life would never revolve around doctor’s appointments, blood works, X-rays, and surgeries. I was 37. I was healthy.
of Republicans trying to kill me through healthcare bills that are nothing more than deathcare bills
of feeling like my concerns don’t matter
of worrying the cancer is back
of wondering what I did wrong
of wondering if I’ll see my kids grow up
of not being good enough
of being told “it’s going to be ok” when you don’t know that
of not sleeping
of letting myself down every morning by sleeping through my alarm instead of getting up early and going for a walk
of crying from exhaustion
of feeling I don’t matter
of being my own worst enemy
I’m a wreck wearing a mask, dreading my next check up, terrified of seeing Dr. O because what if the cancer is back even though I don’t feel any different than I did 12 weeks ago? What if the scans show it’s back? What will I do?
My dad is not doing as well as we hoped after having surgery almost six weeks ago. He has little to no movement on his left side. He’s wheelchair or bed bound at the rehab hospital. He does hours of physical therapy. He’s remarkably better than he was a few weeks ago, but he’s nowhere near how he was this time last year. I’m worried sick about how my mom will handle him at home in a house that is in no way wheelchair accessible.
My sister is back in the picture. I didn’t survive cancer to be scared of her anymore. I’ve vacillated between being livid and being bitter. Eventually, I’ll hit apathy again with this situation just as I have before.
My mom is one of the strongest women I know. The last five years have been nothing but battle after battle and burden after burden for her. The weight she carries everyday would crush me, squash me, pancake me. She wakes up every morning, settles the weight on her shoulders, and marches on. I’m worried sick about her.
My school year started out at 100 mph and hasn’t slowed. I like the fast pace. I like a sense of urgency. I like what I do. I like my classes. I like a new challenge everyday.
Cancer took one of my colleagues on Monday, a teacher who’s taught at the school since I was a student there, a seemingly healthy, ate well, exercised, did all the right things, woman, a mother, a daughter. I froze up when the email came with the news of her death. I avoided Facebook all day.
The grim reality of cancer is death, and I’m running out of spoons and couldn’t face the reality of cancer on Monday.
I see Dr. O in a week and a half for my next check up. I’ve gained some weight, I’m not sleeping, I’m falling back into old habits. It’s a self-defeating cycle, yet here I am. I’m in a constant state of low anxiety, and as my appointment day creeps closer, my anxiety builds. It spikes when someone asks me how A is enjoying his new job (a lot), when someone asks me how my dad is doing (it’s day by day), when someone asks me how I’m doing (we don’t have that kind of time). If Dr. O we’re to measure my spoon count, I’m not sure she’d find many.
My spoons are low, so are my spirit and energy. I’m tired, in all sense of the word. I need more spoons. They’re hard to recover, slow to come back.
This afternoon, a coworker stopped in my room to ask me a question. I responded and went back to what I was working on, and as my coworker reached the door of my classroom, she stopped and said, “Don’t let the beginning of the year stress you out too much.”
I laughed, a short, sardonic laugh.
I’m not stressed out about school starting.
I’m stressed out because my dad had serious brain surgery two weeks ago to remove a benign brain tumor and needs intensive rehab for cognitive and physical impairments due to the tumor. He’s been in the rehab hospital part of Baylor Dallas for a week. He’ll be there for awhile. Then, he needs to be in a skilled nursing facility. Then…I don’t know. I really don’t. My mom and I are going day-by-day. There’s nothing else we can do.
I’m stressed out because this week has too damned many cancerversaries.
Yesterday, towards the end of the day, I sat at my computer to do some serious email purging. I’m an email hoarder at work. I had close to five thousand emails in my inbox…some read, many unread because they were ads from teaching companies or job postings or emails coworkers sent on top of text messages saying the same thing. Some I read on my iPad, but my desktop email program didn’t recognize those emails were read. As I began my deleting and organizing spree, I came across many emails from friends and coworkers dated days after my diagnosis. Each one was another smoldering reminder of the day almost two years ago that changed my life forever.
I left those emails in my inbox. Some of them are still too hard to read. “You’ll beat this. You’re strong. You got this.”
What if I don’t? Am I a weak loser, then?
I deleted or stored all but 42 emails. The best feeling was deleting an entire year’s worth of emails from several years ago (I’m a terrible email hoarder!) without looking at them. I knew there was nothing from that year I wanted or needed to keep, so I highlighted them all and hit delete. Truly, it felt satisfying, watch one year’s worth of emails disappear, a singularly unsatisfying year of emails. Deleting them felt as though I cleared away some regrets.
It was a great feeling.
This Sunday marks two years since I heard the words, “You have breast cancer.” I’m grateful I listened to my gut two years ago. It screamed at me to do two things: Go back into the classroom as a teacher and do it because it’s what you’re meant to do -you were put in this world to teach, and go see Dr. B because it’s not normal for your left nipple to invert only when you raise your arm -it could be related to that weird place you can feel. (Spoiler alert: It was. Sudden nipple inversion is a sign of breast cancer.)
I went back into a classroom two years ago this Friday, and I have no regrets. I’m happy. I’m fulfilled. I make a difference. I work with awesome people. I love what I do and where I do it.
I saw Dr. B for that weird place two years ago last Friday. Maybe that’s the day I found out I had cancer. I knew it, deep down. I just wanted to be wrong, for her to say it was nothing. I didn’t want her to look at me with deep concern and tell me that most lumps were nothing but she wanted me to get this one checked out as soon as possible.
Tomorrow, I’ll wake up early and go to another high school in my district to give several presentations to other high school English teachers. Tomorrow, I’ll come home for lunch and spend some time with my babies. Tomorrow, I’ll think about breast cancer at some point. I think about it, at some point, every single day. But, tomorrow, I’ll also be grateful -I’m alive to think about it, I’m alive to spend time with S and AJ, I’m alive to give presentations to my peers, I’m alive to delete emails.
I’m alive to help my mom with my dad.
For those thing, I am grateful. For right now, it’s enough.
Two years ago today, I saw my OBGYN during my lunch break of PD week. It was a Tuesday. My appointment was at 11:30.
It was that Tuesday when I found out the lump in my left breast, the lump I’d ignored and worried about, was concerning and my doctor scheduled a mammogram and ultrasound for me. I sat in my car, numb, and sobbed for nearly an hour. I distinctly remember saying over and over “Please don’t let me have breast cancer. Please don’t let me become another statistic. Please don’t let me have breast cancer. Please let me live to see my children grow up. Please don’t let this be cancer. I’ll do anything.” Then, I called A and cried some more. Then, I took a deep breath, drove my car back to work, wiped my eyes, fixed my make up, put a fake smile on my face, and walked into my school for the afternoon in service session. I apologized for being a few minutes late, the new teacher no one knew.
I don’t remember a single thing from the rest of that afternoon or evening.
We all know how this turns out…pleas were not answered. I became a statistic…the 1 in 227 who develop breast cancer in their 30s.
I hate this roller coaster. I hate cancer. I hate it for making me believe I will not see my children become adults. I hate it for convincing me I will not grow old with A. I hate it for whispering to my scumbag brain that everything I put in my mouth is going to make the cancer come back. I hate it for making me believe I can do no right, that I am a pawn who can and will be sacrificed at any moment. I hate it for causing me to cringe when I look in the mirror. I hate it for making me belittle myself every single morning when I step on the scale and see my weight has creeped back up, and don’t you know weight gain makes cancer come back, especially to your bones (Yes, someone actually said this to me.)?
I hate you, cancer. I hate what you took from me, from my husband, from our children, from my parents, from my nephew, from my cousins, from my aunts, from my in-laws. You took me, the me I once was, from them, and more, you might just take me away from them.
I hate you for what you’ve done, for the fears and the tears.
Two years ago today, cancer changed who I am, fundamentally and forever.
And, cancer, I hate you for it. Loathe you. Despise you.