breast cancer, life, Uncategorized

Every Morning I Relive My Diagnosis

Either Sunday evenings or Monday mornings, lately, it’s Monday mornings, I fill my pill holder with the pill I need to survive, the pill I need to help my allergies and stop bone pain, the two pills I need to counter my mostly uncontrollable hot flashes, and the pill I take to combat hair loss caused by the pill I need to survive.

Five pills. Every. Single. Day.

I’ve forgotten to take them exactly once. That happened when I switched to arimidex. I had a panic attack in the hospital after my DIEP reconstruction when my plastic surgeon told me I couldn’t take my tamoxifen because of a potential side effect with bleeding. I made my plastic surgeon tell me every single day I was in the hospital why I couldn’t take it. He ended up bringing me literature to read about it. I still called Dr. O, who assured me the few days I would be off tamoxifen were negligible because of its long half-life.

I’m positive if someone told me to stop taking these pills, I would panic. I know it can’t stop the cancer from returning if it’s determined to return, but it’s the best chance I have, along with zometa, which I still haven’t heard if my insurance has approved it, to keep my body an inhospitable place for ER+ cancer to reside.

That and losing fifty pounds. And drinking more water. And exercising.

I have the day off today. My house is quiet. AJ and S are out with A. I chose to stay home because I have a crazy busy week ahead of me. I see Dr. H tomorrow for my six month check up with her. It’s strange, but appointments with her don’t cause my anxiety to rise even though she’s the one who told us exactly what kind of cancer I faced and what my treatments would be. She’s the one who told me my cancer had spread to my lymph nodes.

She’s also the one who came to see me early the morning after preforming my mastectomy because she said she needed to see me. She said she knew I would be heading down the worst case scenario train in my mind and she wanted to talk me through everything she knew at the time. She’s the one who told me that the cancer in my lymph nodes and lymph channels was not necessarily a death sentence.

She’s also the one I call, most of the time, when something isn’t right. A new lump. A strange place on the skin. She sees me almost immediately. She’s the one who sent me for imaging last year when she wasn’t 100% sure a lump in my left foob was fat necrosis and asked the radiologist performing the ultrasound to tell me exactly what he saw because she would not send me home knowing nothing because I was terrified. It was fat necrosis.

She’s the one who Dr. B, my longtime OBGYN, sent me to see after I asked her who she would see. She said Dr. H’s name and said, “MY doctor.”

With Dr. H, I don’t feel like a patient, a statistic. I’m a person with a name and a need, and she knows it. Her whole office staff is that way. I’m sure tomorrow my anxiety will flare, and I’m sure walking into Methodist tomorrow afternoon will be hard because I pass by radiation oncology to get to breast oncology, and as wonderful as the radiology oncology department was to me, radiation is a level of hell I never knew existed.

I relive my diagnosis every single day. If it’s not the pills, it’s the doctor’s appointments. If it’s not the doctor’s appointments, it’s the news and social media. If it’s not the GOP destroying health care in America, it’s something.

Every single day reminds me of what I’ve lost and what I stand to lose, and the hell of it is, there is nothing, really, I can do except take the pills and go to the doctor’s appointments. I could do everything right and the cancer could come back. I could

do everything wrong and live to be 101.

I’m a pawn in the chess game of Fate. Forever in limbo, forever reminded of what cancer has done, can do, and might do. Forever wondering what the next move will be.

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breast cancer, life, Uncategorized

Where Pinktober fails

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I’m constantly, continuously tired. I’ve told all my doctors, and they all agree it’s a combination of several things- insomnia, back to back to back to back to back surgeries (I had five -two major, two minor, one sort of minor- surgeries in a one year span…I’m still not a year out from my last surgery), a solid year of cancer treatments, radiation, and the whole PTSD resulting from diagnosis, treatments, surgeries, and follow ups. Every so often, it catches up to me in a major way.

Yesterday afternoon, I decided to lie down. It was 4 pm, and I figured I could take a quick nap before going to dinner and the football game. I woke up at 6:41…a lot later than I planned because that 6:41 came this morning.

Thanks cancer…

Y’all, it’s Pinktober, and I get it makes people feel good to donate or help out breast cancer awareness, but the thing is…we’re all aware of breast cancer. What we aren’t doing, what we’re failing at with horrific and deadly consequences is finding new treatment options, finding cures -breast cancer is more than one type of cancer, providing support to those living with breast cancer and those living after cancer treatment, and realizing the happy narrative of breast cancer awareness month fails in so many ways.

There is an underlying arrogance of breast cancer awareness, if you’re aware, you won’t get cancer or if you do, it’ll be caught early. Fair enough on early detection, but early detection doesn’t save anyone from Stage 4 -one in three diagnosed at Stages 1-3 go on develop Stage 4. 40,000 will die THIS YEAR from Stage 4 breast cancer, the only kind of breast cancer that kills. That number HAS NOT CHANGED since the birth of Pinktober.

We have to do more than be aware of breast cancer. Awareness is not changing the statistics of survival, particularly for Stage 4. Research is. Clinical trials are. Doctors are. Science is. Advocacy is. METAvisor is. Stand Up to Cancer is. The American Cancer Society is. The National Cancer Institute is. Breast Cancer Research Foundation is.

Most of the time, lately, my anger towards the fact I developed breast cancer at 37 years old is on a slow simmer, but like any simmer, it can become a boil very quickly. Pinktober has my anger on boil 24/7. Breast cancer is more than a month and more than a pink ribbon. Breast cancer is millions of women and men. Breast cancer is 40,000 funerals and memorial services a year. Breast cancer is treatments year-round. Breast cancer is short term planning. Breast cancer is bankruptcy. Breast cancer is a game to politicians. Breast cancer is too many people’s reality.

I slept nearly 11 hours last night not because I was out late or had a hard day or week or because of any fun sort of reason. I slept 11 hours because I had breast cancer.

That’s my reality. That’s my January through December. It’s not just a rah-rah, feel good, pink-all-the-things time. It’s my life.

breast cancer, life

Years

A year ago, I had my port removed. It served its purpose.

A year ago, we started getting ready to move, again, because our dream house was a month from being completed.

My husband’s motto for us is the cliche “You only live once” because the two of us know the fragility of life. It changes in an instant. So, a year ago, we started doing the things we’d been putting off -selling our house, pursuing career options, planning family trips. We are a lot less focused on the intangible.

A little over two years ago, I made the decision to return to the classroom as a teacher. I’ve never looked back, never questioned the decision, and I’m happier for it. This year, A made the decision to find a new job closer to home, scrapping his hour to an hour and a half commute. He found a position which challenges and fulfills him as much as his other job did.

We keep making changes, some big, like career changes, and some little. We’ve lived in the shadow of cancer and reoccurrence for two years now. So far, it’s no easier. Reminders from On This Day catch me off guard. Answering innocent questions about my port scar on my neck make me cringe. Today, AJ asked me about it. He’s forgotten about my port and those surgeries. Those were little surgeries to him. I was home within hours of those.

Oncologists talk about survival rates in years, in appointments in years. As a HER2+ cancer recoverer, I don’t get to go to six months and once a years until I’ve been no evidence of disease for seven years, or that’s Dr. O’s standard. I graduated to twenty week check ups with her, was yanked back to twelve week check up because of Arimidex, and am now to sixteen weeks because of my anxiety at my last appointment. I might return to twenty week check ups, but not until next summer. If I make it to three years with no evidence of disease, I’ll still be on twenty week check ups. Same for four years. At five years, Dr. O said she would go to six month check ups. Same for six years and seven. If I make it through year seven with no evidence of disease, I graduate to one year check ups…for the rest of my life.

Cancer is a never ending marathon.

Maybe one day, my picture quote will ring completely true for me. It’s not right now.

I’m not strong and full of fire.

My passion does burn, though, but not brighter than my fears.

Maybe one year, it will, though.

breast cancer, life, Uncategorized

Another cancerversary

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Found on Pinterest. No infringement intended.

*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.

I’m not sure how I feel about that.

breast cancer, life, Uncategorized

Cancer Care and Politics #4

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My Recent Calls this afternoon

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.

Then, I wasn’t.

breast cancer, family, life, Uncategorized

My Spoons Are Running Low

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I’ve never been good at saying no. I’ve never been good at asking for help. I’ve never been good at admitting I’m overwhelmed. I’ve never been good at putting my needs ahead of those I love.

But, I’m running out of spoons.

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.

But, I’m running out of spoons.

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’m really running very low on spoons.

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.

I need my spoons.

breast cancer, family, kids, life, teaching, Uncategorized

Deleting and Clearing

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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.

breast cancer, life, Uncategorized

It all began two years ago

 

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It just hit me…today is a cancerversary.

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.

Screw you.

breast cancer, family, life, Uncategorized

Straight to the Feels

I fell down the rabbit hole of cancer articles this afternoon -some feel good, some not-so-feel good. I started out reading an article from an invaluable resource I stumbled upon on Twitter months ago, I Had Cancer. From there, the rabbit hole deepened.

As I read the articles, the blog posts, the personal essays, they were like sucker punches. Straight to the feels.

This has been a rough day. I slept horribly.    My son had an argument with one of his friends and was really upset. My daughter sensed the tension in the house today and took refuge in her room. I’ve been a ticking time bomb of emotion since I fell down the rabbit hole this afternoon.

I still believe this is my fault. I did something wrong. I had a 1 in 220 chance of breast cancer at 37. I had a .4 chance. Yet, here I am. What did I do wrong? Nothing, everything. Cells are innumerable, and all it takes is a clump to go nuts. Some of my cells went nuts and grew a tumor. I have breast cancer thanks to those haywire cells. I couldn’t stop it. I know that, but it happened to me. My body betrayed me.

Betrayals linger and sting, burn and hurt.

August is coming, the 2 year anniversary of my diagnosis. Watching the calendar move closer to those days where I had appointments and tests and biopsies is traumatic. Knowing those days await is traumatic. A breast cancer diagnosis is traumatic. Treatment is traumatic -chemo, radiation, targeted therapies, and immune therapies if needed. Surgery is traumatic. Completing treatment is traumatic. Going for checkups is traumatic. Going for scans is traumatic. Cancer is an assault on the body, the mind, the soul. As I wrote last year, a diagnosis of breast cancer is something that never goes away, no matter the stage. It’s always there, and it’s always traumatic, and it’s more traumatic for some than others. It does not make a person weak, the person who struggles with the diagnosis every single day -a person like me, who searches for the way to make this wrong a right knowing intellectually I did nothing wrong, but the human need to make amends is there, strong sometimes, demanding to be felt.

I have not moved on from being asked why I thought I developed cancer, the unspoken blame. I have not moved on from being told I should be happy about getting new breasts, the insinuation if I were happier, cancer would be easier. Nothing about cancer, any cancer, is easy. I wish people internalized that.

The healthcare battle in Congress over these weeks and weeks has been traumatizing, fearing I could be facing lifetime and annual caps on my insurance, discrimination because of breast cancer. I cried when the three GOP senators voted no. I felt a moment of reprieve.

A moment of reprieve. That’s what I get with the shadow of cancer -moments of reprieve.

I vacillate from happiness to despair, joy to anger, shame to apathy. I liken cancer to a roller coaster, and like a roller coaster, the track is rarely just straight. As I coast towards these cancerversaries, the track twists and climbs, drops and frightens. I am frightened. I want so badly to be fearless, to be the person who’s been diagnosed with cancer and becomes better than they were, stronger than they were, happier than they were.

I wish I were, but I’m not. I still put on a mask most days -I’m ok. I’m fine. No, nothing’s wrong. Most fall for the mask. They’re happy to believe I’m ok. They don’t see the sadness, the fear in my eyes.

I’ve yelled at A today, picked fights with him. I’m moody, scared and sad. I’m struggling today. Everyday is a struggle. Some days are harder than others. Today is a harder day. I had nightmares last night, didn’t sleep well, and it would be easy to blame the nightmares and bad sleep on the way I feel right now; however, the truth is simple -today is just a harder day.

“As far as you know, you’re cancer free right now. Stop worrying about it. You’re so dramatic,” I’ve been told by well-meaning friend. Maybe I am dramatic, but I’m doing the best I can. I’ve had cancer, I’ve faced my mortality, and some days are better than others.

I never feel cancer free. I don’t really believe that’s a thing anymore. It’s always there, lurking. Cancer is my Grim Reaper. Death always lurks around us. We’re mortal. Cancer makes me feel it more acutely.

I’ve been told I have to wake up every day with the mindset to win. I hate that. Cancer isn’t win or lose. It just is. Why do we lose to cancer? I hate that saying. I hate that mindset. Isn’t living that battle? We don’t lose to death. My great-grandmother died at 101. No one said she lost to old age. One of my grandfathers died in his eighties after living for years with Alzheimer’s. No one said he lost to Alzheimer’s. So, why do cancer patients lose? That’s demoralizing. No one facing a life-threatening illness is a loser. We all succumb to something. Why is cancer associated with loss? Death is loss. It just is. It exists, we all face it, we all know we are not promised tomorrow, yet when tomorrow doesn’t happen for a person with cancer, society says that person lost. It’s infuriating.

While I hope with all my being I will not succumb to breast cancer, I know it’s a possibility, and if that possibility comes true, don’t ever say I lost to cancer.

breast cancer, Uncategorized

Reconstruction Reflection

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I’ve sat down to write this post several times since late last night. Then, I allow myself to be distracted. Cancerversaries approach. Surgery anniversaries approach.

One year ago today, at this time, I was into my first hour of my DIEP reconstruction, of having myself put back together using other parts of me…a little bit like Frankenstein’s Monster but with my own skin and blood and fat.

Sometimes I feel a little bit like a monster, scars and stitches, tough skin and thin skin, discolorations and spots.

Last year, I REALLY did not want to do the DIEP reconstruction. I just wanted to be done with the intensity of cancer. A friend texted me the night before the surgery and reminded me all I had to do was show up. So, I showed up. I had the DIEP reconstruction. I came home with drains, incisions, stitches, and glue. I did not come home happy to be done because cancer is never really done. At this point last year, I still had three Herceptin treatments and an oophorectomy in front of me, at the very least.

It’s been a long time since I felt normal, truly, deeply normal. That’s partially why I began getting tattoos. If I can’t be who I was before cancer, I can be the person I want to be with cancer. I saw my dermatologist last Friday afternoon for my yearly skin check. He commented on my “musical” inspired tattoos. I didn’t correct him because all of my tattoos do have a music note-esque look to them. I’m already planning my next one…a Harry Potter one, probably on my left shoulder or left ribcage. I don’t have very much feeling on my left ribcage from the DIEP, so that’s appealing.

The DIEP began to put me back together, and looking back on it, I don’t regret it. I regret the fact I had to have it. I don’t regret the scars. I regret what mandated the scars. I do miss the things breast cancer stole…my breasts, my ovaries, my happy. Sometimes, I really do miss pre-cancer, hypochondriac me.

I accept what I’ve endured. I accept I may not live to see my children grow up, to grow old with A. I also rage against that which necessitates acceptance.

Reconstruction, to rebuild. I’m still rebuilding.

Maybe I’ll always be under construction.