breast cancer, family, kids, life, Uncategorized

In the quiet

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My mind is quieter tonight. I sit here, reclined in our bed while A sleeps, and though Dr. O was adamant about me getting more sleep, my mind works, processing today.

I remain no evidence of disease.

Another 20-week reprieve.

Monday night, one of my best friends texted me this reminder

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It struck me, the truth in her words, the truth in the privilege of the word “get.”

I’m alive.

What a privilege it is.

Summer appointments are hard because it was this time in 2015 when my gut began screaming at me that something was not right with the hard knot I could feel in my left breast. I ignored my gut until August when I couldn’t ignore it anymore. I wonder if I would have called Dr. B if I had not raised my left arm to towel dry my hair that fateful August evening and noticed, with horror, undeniable physical proof something was not right with my left breast. I called Dr. B the next morning. In that moment, my breast cancer roller coaster ride began.

Thanks to Dr. O, I get to be here, for now, and for now is enough. As one of my longtime mentors reminded me when I was first diagnosed, something each day has to be enough, even the smallest thing. That’s gratitude.

I know, come November, my mind is likely to do to me then what it’s done to me over the last three weeks, what I’ve allowed it to do to me. I understand I allow it. I’m not sure how to cope or overcome it. Maybe accepting it, my fear, is enough. I am scared breast cancer will be the end of my story. Appointments with my doctors might always bring up my fears. I have to accept that.

I felt silly at my appointment today. In one hand, I clutched a small, rough amethyst. In my other, I clutched a small chunk of clear quartz. It helped, though, having those in my hands. I rubbed my thumbs along side their edges, smooth and rough, something tangible to concentrate on, to use for stress and anxiety relief. My version of fidget cubes.

My bloodwork was completely, totally, boringly normal. No evidence of anything. No more anemia. No more borderline bad liver numbers. Just normal bloodwork for a 39 years old woman.

I have to go back in September for more bloodwork and scans. Dr. O switched me from tamoxifen to arimidex today. Bone density tests. Vitamin D levels. When I texted my friend with that update, she replied IMG_1823

 

 

 

Get to go.

Privilege.

Life.

I get to spend more time with A, S, and AJ, who buried his head in my neck and wrapped his arms around my shoulders when I told them I saw my cancer doctor for a check up and I’m no evidence of disease.

“I love you, Momma,” AJ whispered.

I kissed his forehead. I got to kiss his forehead.

I get to be with them.

Privilege.

Life.

As I fall asleep tonight, its with these thoughts. My mind processes. My heart grateful.

breast cancer, family, life, Uncategorized

Superlative

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I don’t make friends easily. I’m not gregarious or outgoing. If I’m at a house party with people I don’t know well, or don’t really want to know well, I’m likely to be off playing with their dog or cat. If they don’t have a pet, I’m likely sitting off somewhere reading the book stashed in my purse or downloaded to my phone.

I don’t trust others easily. I’m suspicious by nature. I tend to look for the worst, to believe the worst. I’m doubtful. It makes me difficult. I recognize this flaw in me. I know it’s a flaw.

We all have flaws.

Fortunately, I’m lucky enough to know people who were willing to break through my shell, my true and dearest friends. They are a small but mighty (and sometimes motley) group.

Tonight, three of us met for dinner. It’s been hard for us to find a time that works, but my friends know I see Dr. O tomorrow for a 20-week check up, and despite having other things to do, the two of them made time for me tonight. As Ash said tonight, “You’d do the same thing for either of us.” Then, she made it clear, I will not go to my appointment tomorrow alone. She will come with me. I didn’t ask. I didn’t have to ask.

These two are my sisters, not of blood, but of love and choice. We are a small, but mighty group.

And, I don’t know what I would do without them. I treasure their friendship.

I treasure them.

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

Honesty is the hardest policy

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If a part of becoming a happier person is being honest with myself by labeling negative emotions, then I have to address the elephant in my headspace.

I’m jealous…deeply, horribly, shamefully jealous, and that jealousy leads to me being angry. Together, they make a nasty stew in my head full of negative thoughts and what-ifs and why mes.

I’m jealous of people who don’t worry about cancer.

I’m jealous of people who are healthy.

I’m jealous of people who do not struggle to lose weight.

I’m jealous of friends who seem to have it so easy.

I’m jealous of ex-friends who keep making bad choice but come up smelling like roses.

I’m jealous of people who are happy.

If I’m being honest with myself, I have to acknowledge this part of me. It’s an ugly part. But more than anything, I have to change this part. Honesty is like forgiveness -you have to mean it. So, to put a more positive thought process into practice, I’m starting a 30 day self-care challenge, and I’m throwing away products I’ve been holding onto that I’m not going to use again.

Last year, a friend at work who used Beautycounter (no, I’m not a consultant, and no one asked me to provide this information) encouraged me to check it out, and I switched my foundation and powder to theirs. Sunscreen is where I always feel damned if I do and damned if I don’t because the EWG decries most sunscreens, and let’s be honest, I don’t want to give myself any more reasons to blame myself for cancer. To that end, I switched my sunscreen to the Beautycounter sunscreen lotion. It’s expensive, but it was so worth it last summer. I didn’t get a single sunburn, nor did my daughter. It smells a little like limes to us, it goes on easily, and it’s not greasy. I actually feel good about using it. I just ordered two more bottles (I know, I know, but we’re going to Florida in a few weeks, we have a community pool in our new neighborhood, and we have season passes to the local waterpark. We spend a LOT of time in the sun and water), and I literally feel relieved. I do so much that’s not good for me..junk food, Dr. Pepper, candy…that I have to do things for me that make me feel as though I’m doing something good for me. I can be more aware of my beauty products, and I am, now. Hence, Beautycounter…and Say Yes to Cucumbers…and Acure. I no longer use any beauty or skin products with parabens and such if I can avoid it. I feel good about what I’m putting on my skin, and as much as I love my Bath and Body Works stuff, I don’t feel good about using it anymore. So, today, I trashed or recycled everything I was keeping. Wasteful? Yes. None of it was new or unused, though. Some had less than a tablespoon of soap left. Part of the self-care challenge is purging what you don’t need. I didn’t need any of it.

Another part of the self-care challenge involves cooking. That’s not a big deal for me. I know how to cook. I like to cook. I’d fallen out of the habit, though, so we were eating a lot of drive thru (read: McDonalds and Cane’s). Besides not being the best for us, it’s a killer on our budget, so I’ve cooked every day this week. In fact, yesterday, A, when he came home to crock-pot pulled pork sandwiches, he told me he likes summers when I’m a stay-at-home wife. I laughed. He laughed. He knows as much as I love the idea of staying home, I wouldn’t do it long-term. I’m not the kind to put all my eggs in one basket. I need to help provide for our family. Beyond that, I love teaching and where I teach. As I told a friend this week, I’ll either retire or die a teacher. On Monday, I made homemade red pepper cream sauce (with peppers from our garden) and vegetable pasta with baked marinated chicken bites. On Tuesday, I made smothered pork cutlets, mashed potatoes, and spicy asparagus spears and quarters tomatoes (from our garden). On Wednesday, I dry rubbed some pork shoulder and threw it in the crock pot with sliced onions, sliced mushrooms, and some chicken stock, and then, I made black-eyed peas to go with it because I believe in the superstition that black eyed peas can bring good luck. Today, A had a second round interview for a job opportunity which would be an amazing challenge for him and an awesome opportunity for our family. I’m grateful he even made it to the second round of interviews, which takes me to another part of the self care challenge: Being grateful.

I have the app Calm. I’ve begun using it for the 7 days of Calm and the Best of Daily Calm. One of the Best of Daily Calm’s programs is a gratitude one. I did it today. I’m working on that whole changing my brain process from constant negative. I’m not going to lie, it’s hard. As I’m staring my five month check up in the face, I just want to crawl in bed, pull the covers over my face, and cry for days. To be honest, I’ve done that, but it’s not going to solve anything, and A, as always, is right when he said I’m just allowing it to steal my joy. I’m not joyful, not by a long shot, but I am grateful today…and yesterday…and Tuesday, when I started this challenge.

Today, the Daily Calm was to think of people you’re grateful are in your life and to focus on the happiness those people bring into your life. That was easy. AJ, S, and A. My parents. A’s parents, sister, and brother. BFFs Ashley, Natalie, and Heather. Cancer recoverers Kristen and Diane. My teacher squad. The people who are my center, who I can call in the early morning, who I can rely on no matter what, no questions asked, no judgement given. I’m grateful for them.

Yesterday, the self-care challenge for gratitude was an event you’re grateful for happening. Maybe it’s wrong of me, but the first thing I thought was actually when I was hired for my current teaching job. I was so damn glad to go back into the classroom and to do what I know I’m meant to do. I liked instructional coaching and curriculum development, but my heart is with students and school communities. When my current campus said they were sending my packet to HR for hiring, I hung up my phone and cried. I was so happy. Then, I called my teacher squad, several of whom had encouraged me to seek a teaching position. As much as 2015-2016 sucked with cancer, it was a school year that truly changed me as a teacher. I told my Class of 2017 seniors on the last day I saw them prior to graduation, they changed me as a teacher. Their kindness, their work ethic, their concern for me and for each other changed me. I can count three senior classes in my 17 years who fundamentally changed me as a teacher: the Class of 2004, the Class of 2012, and the Class of 2017. I’ve taught some amazing kids in other senior classes who deeply affected my life (Class of 2008 and Class of 2011, I’m looking at you!), but these three classes changed me as a teacher. The Class of 2004 were my first students. I taught them as freshman and then as juniors. We learned high school together. I am proud to count many of them and their families among my friends. The Class of 2012 helped me remember why I became a teacher. I had them as freshmen, sophomores, and juniors. Not going to lie…I was becoming a burned out teacher when I had them as sophomores. Their curiosity for learning and burning need to prove themselves made me dig deep as a teacher. Challenging them was a challenge for me, and as they challenged me, it made me find myself as a teacher again. Then, the Class of 2017 walked with me through cancer, and never once were they anything but kind, caring, and understanding. As far as I was concerned at school, cancer couldn’t affect me at school. Those kids were in my classroom for an excellent education, and I’m not the type of teacher to give busy work because I’m tired or not feeling well. We powered through together, and I couldn’t be prouder of my students. I couldn’t be more grateful for the opportunities I’ve had as a teacher to impact my community.

On Tuesday, the challenge was to find one thing to be grateful for, and honestly, my first thought was A. He’s my rock, and I’m so damned proud of him and the work he does. I’m so proud of who he is, and I’m so grateful he’s stuck with me for 21 years. I know I’m not the girl he or his family envisioned him dating, much less marrying, yet he fell in love with me. Not a day goes by that I’m not grateful for him.

I hope this self-care challenge and the Calm Gratefulness Meditation helps. I really do. I’m actually, really trying to be good to myself. The little girl I was would beat up the woman I’ve become…the worried, negative, pessimistic, sad woman I am. That little girl took risks, embraced challenges, and tried to make others happy because she was happy. It’s my mom’s fault I’ve been thinking about myself as a kid. My mom found one of my old dance pictures…the last year I took tap classes. She brought it over to give to me, and after she left, I looked at that picture and thought about that last year of tap. I hated my tap teacher, but I loved tap. So, I tapped. I had a stupid rehearsal outfit (tights and leotard were pink with black tap shoes all over them). I didn’t care. I remember having to go up to my mom’s school, now the school I teach at, one night after tap class because she was working the concession stand at a basketball game. I had on that stupid outfit and my tap shoes. I remember some kid who was working the concession stand asking me if I wanted to borrow a spirit shirt. I remember staring at them and then tapping out of the concession stand, into the Student Council office. I was nine…maybe 10. That girl wouldn’t recognize the woman she became.

I have to work on that because I want my little girl to be proud of me. I don’t want S’s, or AJ’s, memories of me to be like my memories of my grandmother. She was negative and pessimistic. She was loving and caring. I want to be more, to be better than that.

So, I’m working on it.

breast cancer, life, Uncategorized

A collision with cancer

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I’ve damaged relationship with some friends lately, people I’ve known two…five…ten…seventeen years.

How?

Politics.

My politics are too aggressive. My viewpoint is too harsh. My animosity towards the healthcare situation is too strong. One friend told me she liked me better before cancer.

Me too. Sort of. Me too.

There’s a lot of WTH to process in that statement.

Before cancer, I kept my politics to myself or family and close friends. Long, long before cancer, my mother would leave a room if my father and I were watching the news together and Reagan, Bush, or Clinton, or Ann Richards or Bush Jr were on the news in some way -she didn’t like mediating our politics because I was a Republican and my father, a Democrat. Long before cancer, I realized I disagreed with much of the GOP platform, and I realized my politics were shifting moderate, democratic. Long before cancer, I minored in political science, found myself fascinated with constitutional law, toyed with the idea of law school. Before cancer, I voiced my opinions, but I did it quietly, in a roundabout way because I’m a people pleaser. I don’t enjoy when I upset or hurt people. Then…cancer.

When I was diagnosed, one of the only sighs of relief I took was knowing the ACA protected me from being dropped by my insurance company and prohibited annual and lifetime limits or caps. I knew my treatments and surgeries would be covered- I would not run afoul of an annual limit or test the reaches of a lifetime limit. Then…Trump, the GOP.

The AHCA, a bill so despicable, Congress exempted themselves from it and opened the door to annual and lifetime limits, even on employer provided insurance. Again.

When the House passed the AHCA, a friend with a lifelong autoimmune disease texted me that she felt nauseous, afraid of what might happen, especially since she’s in the throes of a flare right now. I called her instead of texting. We talked for nearly an hour, both of us terrified of what lies ahead for our health, our families, if this atrocious bill becomes law in any shape of the House form.

Another friend asked me why I’m really all that worried since, “your cancer is gone.” My head exploded. Then, I corrected her, told her I am no evidence of disease, and all that means is right now. When I see Dr. O on June 20th for my next 5 month check up, I’ll know my future five month fate. We live check up to check up, scan to scan, test to test, us cancer patients. I’ll either gain a five month reprieve or take part in another conversation regarding cancer I hoped I’d never have.

It’s funny, and by funny, I mean not funny at all, but when I was diagnosed, when I was quiet about my politics, when I soldiered on with a fake smile and an “I’m fine,” lie, I had all the support.

Then, I spoke up to my friends about the protections of the ACA. I used clinical evidence from the ASCO and from the annual SABC conference. I used personal evidence. I used nonpartisan evidence from CBO. I condemned those who voted for Trump for what millions of people with preexisting and life threatening conditions are now enduring, the fear of what happens next, as if having a medical (or mental or physical) condition isn’t enough worry and stress. I begged friends and family to understand from where my fear came.

My condemnation was too much, I guess. So now, I’m left to wonder is it me who is in the wrong. Do I regret the stance I’ve taken, the choices I’ve made?

A little, actually.

I’m a people pleaser. I hate causing drama -I’ll enjoy a bowl of popcorn as I watch it if it doesn’t involve me, though. I don’t want to be disliked. I’m choosy when it comes to friends, and I’m grateful for my small squad of framily because not a one if those friends I trust like family have been anything but loving and supportive. It’s the bigger circle that’s shrunk, and I am saddened by that because I am choosy and thought I chose well. But, then again, I’ve been blindsided and backstabbed more than once before. Maybe my judgement isn’t the best, but the reason why is the best: I believe the best in most people, especially those I know personally. I give second, third, fifth, twentieth chances.

I know the adage, you can’t please all the people all the time. I understand that. What I don’t understand is how you can support me through cancer, cancer treatment, and cancer surgeries but then be offended and disappear when I call out politics and political games when those directly affect my life and the lives of those I love. What would you do? Remain silent? Put on a fake smile and an “I’m ok” lie?

Been there. Done that. I did it to protect my friends and family because I figured no one really needed to hear how bad I felt from chemo, whatever reaction I was having to Perjeta, how tired and overwhelmed and terrified I was (and still am). My parents, my in laws, my husband all knew. They lived it with me. Sometimes, the last thing I wanted to do was talk about cancer and treatments and surgeries and prognosis. Besides, it was made pretty clear to me that people expected me to breeze through as though it was nothing because it’s breast cancer. It’s treatable. It’s easy.

WTH?

Now, I know the people who expected that of me were fools, but worse, so was I.  I allowed that expectation take hold in me. I couldn’t let anyone down. If I did, I was a disappointment, and that’s one thing I cannot abide, being a disappointment.

I’ve said and done some pretty stupid things. I’ve hurt people without meaning to do so. I am sorry for that.

I’m not sorry, though, that cancer made me more likely to speak up than remain silent. I have so much to lose if I remain silent. I’m sorry if I’ve disappointed you, but I won’t stop calling out those in power who are trying to undo eight years of healthcare progress. My life literally depends on it, and you know what?

Yours might too.

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

A Friday Full of Failure

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An experimental third-person limited series of vignettes about my Friday.

Part 1 -The first failure

It’s 12:30 am, early Friday morning. L can’t sleep again. She lies in bed, reading on her iPad -a sci-fi book, part of a series that catches her imagination. She knows she needs sleep, but her brain will not shut down despite her attempts to relax. She knows she has to be at work in six or so hours. Fleetingly, she thinks about putting in for a substitute, but it’s Friday, and subs are a precious commodity on Fridays. She doesn’t feel right putting in for a sub. She’s not sick. Her kids are not sick. She just can’t sleep. Plenty of people struggle with insomnia and go to work exhausted. It won’t be the first time L’s gone to work after having slept less than six hours. It is what it is. People count on her.

L turns her attention back to the book she’s reading -to have something to focus on besides her fear of dying, fear of cancer, fear of fragility and mortality.

Sometime, in the wee hours of the morning, she drifts into dreams.

Part 2 -The second failure

It’s 6:01 am, Friday morning. The screeching noise from beside her pulls L from sleep. She hits her alarm clock. It takes effort not to burst into tears. The last time she saw the clock, it was 4 am. She thinks she slept some from 2:00 am to 4 am -a fitful sleep, but she thinks she rested a little. She’s not sure about 4 am-6 am. If she slept, it doesn’t feel like it. A tells her to get up. It’s Friday. S has choir practice every Friday morning, and her ride will be there soon. She wishes she had given in and put in for a sub. She knows she won’t be on her “A game” today. She knows she’ll be lucky to be on her “F game.” She goes to dress. As part of her morning routine, a part she knows does her no good, she steps on the scale. The number staring back at her makes her cry. In her head, she hears the words of Dr. O’s nurse practitioner, “We’ve had patients no evidence of disease for ten or more years who gain ten or fifteen pounds and their cancer comes back. You need to watch your weight.” She feels shame because she’s gained ten pounds. She feels fear because her brain tells her the cancer will return and when it does, it’ll be all her fault. She feels anger because her head is being such a scumbag right now. It’s been like that for days now.

She roughly wipes the tears away and jams the heels of her hands into her eyes. “You’re just exhausted,” L tells herself. Maybe she’ll rest this weekend. It’s a busy one, but maybe she can rest more. She steps off the scale and puts a smile on her face as A walks into the bathroom. The fake smile doesn’t fool him. He stands beside her. A critical gleam in his eyes doesn’t quite mask the concern reflecting deep from them. “You have got to sleep. You have got to stop staying up all hours. You need to take a shower at 9:30, be in bed by 10:00, and asleep by 10:30. You need to get your sleeping habits back on track. Part of being healthy means getting enough sleep.”

She stares at A. She wants to scream at him that she needed him to be sympathetic, to hug and hold her, to lend her some of his strength. She didn’t need his cool logic, but that’s what she got. She mumbles that she’s leaving to go to work. She gives hugs to S and AJ, takes her medicine -tamoxifen, Claritin, biotin, Flonase, and gets into her car, starts it, pathetically grateful for the classical music station when the radio comes on because it’s playing a piano piece by Mozart, soothing.

Part 3 -The third failure

For the first time in a long time, walking into work, a place she loves, feels heavy -a burden she doesn’t know if she can carry this morning. Most of her students, her juniors, will not be in class this morning -they’re out taking the APUSH exam. Her first class is Seminar, and they had their exam Thursday afternoon. She knows the seniors and sophomores who show up are going to be tired, ornery. They’ve had a long, disrupted week of AP and state testing.

She unlocks her door, turns on the lights, turns on her coffee maker. The bell rings; students trickle in. She turns on her computer and yawns. The warning bell rings. A few more students trickle in. She tells the students in her room that she’ll be right back as she grabs her coffee cup, it needs washing, and walks to the office.

In the office, L washes her coffee cup. It’s one of her favorites with a black cat that sits with a look in its face with the phrase “You’ve got to be kitten me.” It’s prophetic this morning, not that she knows that yet. She washes her cup, says hello to a substitute teacher she knows well, goes to the ice chest, and puts a few cubes in her coffee cup -she prefers her coffee warm instead of taste bud melting hot. One of the academic counselors comes in and comments, “I heard there was a lot of sleeping in the Seminar exam yesterday.”

L stares at the counselor. Her face flushes red. Her heart sinks. She says, “Oh?” and the counselor nods her head. L walks out of the office, angry, hurt, and runs into a Seminar student she knows and trusts. She asks the student, a junior, if she saw students sleeping. The girls nods. “I’m sorry, Mrs. V. I wasn’t one of them.”

Part 4 -the fourth failure

L fights tears as she walks back to her classroom. She sees her department chair and tells her what just happened and childishly says, “I just want to go home.” L’s department chair squeezes her shoulder.

Standing outside her classroom, L takes a few deep breaths. She knows she’s on the verge of tears. She’s an angry crier, an exhausted crier. She’s exhausted. She’s angry. It’s not professional to cry in front of students, she reminds herself and opens her classroom door. She makes it a few steps inside the room, but she stops. She looks at the very few faces in her room, and the anger bubbles out in quiet condemnation, “You slept? One of the counselors just told me there was a lot of sleeping. You slept?” Students avert their eyes. Some flush an embarrassed red. A few questioning glances dart back and forth, seeking silent answers from unspoken questions. Here and there someone nods, admissions of guilt.

Angry tears flood her eyes, and try as she might, she can’t stop them. “You didn’t try. The only thing I ask is that you try, and you didn’t try. Some of you didn’t even show up.” Tears from anger, from exhaustion roll down her cheek. She’s embarrassed. “We worked so hard,” she whispered. “You didn’t even try.”

She turns, grabs the door knob, and steps outside her room. She needs to compose herself. She knows better than to let something get to her like this. She’s just so tired and so worn out. She sits down, leans against the wall, covers her face with her hands. Her shoulders shake. A few more tears slip. A voice, “Hey, are you ok?” L says she’s fine. The teacher -choir director now- former student of hers once upon a time, sits down beside her. “Mrs. V, what happened?”

She says she’s just tired. It’s been a long, stressful week, and she’s upset knowing some students didn’t even try on the exam. Her former student, colleague now, sits beside her and just listens. Then, she goes inside the classroom while L goes to wash her face.

She sees her department chair and tell her that she just needs to go home to sleep. She can’t face the rest of the day. She’s too tired, too overwrought. Her department chair hugs her and tells her not to worry, she’ll get it worked out. “Go home and rest,” another colleague and friend tells her. “We’ve got this. I’m sorry for whatever is going on. Don’t give here a second thought,” another says. “I’m going to nag you to rest,” says the one who told her to go home and rest. L smiles at this, a watery, sad smile. She goes home.

Part 5 -the last failure on Friday

Exhaustion wins. Friends will cover her second period class. There’s a sub who can cover fourth. So, she goes home, and she sleeps. Finally.

But…

She fails on this Friday.

She fails herself. She fails her colleagues. She fails her students. She fails her administration.

She fails on this Friday.

She fails to be strong. She fails to be confident. She fails to be humble. She fails to be grateful.

She fails on this Friday.

She fails.

But, she will get up. Failing means trying. And all she asks of anyone, including herself, is that they try.

So, she’ll try again.

She’ll fail again.

And so the cycle goes.

breast cancer, family, kids, life, Uncategorized

Unacceptable

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Back in November, I posted on Facebook, and took it down because people’s feelings were hurt, that if you voted for Trump and Co, you were voting against my life. After today, I am done being nice to people who voted for this disaster of a president and Congress. You voted against my life. You, family member, who told me you thought a businessman would be a better president than any politician because government is just like business. You, family member, who told me that the GOP would never really try to repeal the ACA without a replacement that protected pre-existing conditions from predatory insurance practices. You, friend, who told me that the ACA is the worst thing ever and haven’t I noticed who people from other countries come to the US for medical care because they cannot get medical care in their “socialized medicine countries” (which is, for the most part, not true). You, friend, who told me not to worry because “you don’t use that Obamacare…you get insurance through your job,” yet failed to understand the protections baked into the ACA are the sole reason my insurance CANNOT DROP ME.

So. Congratulations. If this passes (https://www.vox.com/2017/4/25/15429982/gop-exemption-ahca-amendment), you have given my insurance company and the State of Texas permission to charge me more because I developed cancer, which, according to the American Cancer Society, 1 in 2, 50% of people, will develop in his or her lifetime. In case you cannot comprehend what that means, you chose to play and hope you do not win the cancer lottery. I don’t gamble, a holdover from my Southern Baptist upbringing, but even I know those are pretty craptastic odds.

If this passes, if and when my cancer comes back, you have given my insurance permission to drop me or charge me so much I can no longer afford it. That seems like compassionate conservatism.

Didn’t Plato say “the measure of a man is what he does with power?” Republican are pro life, until birth. After that, forget it. Republican lawmakers have gone on record THIS WEEK saying people should just get better jobs if they want health insurance and health care is not a human right. We are the ONLY industrialized country without a national health plan because “free market.” Healthcare should not be for-profit. Healthcare should not be a bargaining chip. Healthcare should not be up for discussion. Healthcare should be a right of every American, and do not let Paul Ryan fool you with the BS about giving people access by providing choice. I have access to a Tesla every time I go to NorthPark Mall. I do not have a Tesla because I have access. I can look at it. I can sit in the driver’s seat. I cannot buy it. I can’t afford it. Access to a doctor, to a hospital, to a clinic, to a nurse, to anything medical means NOTHING if you cannot pay for it in a for profit healthcare scheme.

Republicans like to use Christianity as a hammer. They claim to be the party of Jesus. They use the Bible as a sword, yet, they seem to forget Jesus’ Sermon on the Mount -“Do unto others as you would have them do unto you.” Luke 6:31. Or, they forget, in Matthew, Jesus said, “Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me” Matthew 25:40. Or, they just do not care. Whatever gets them the vote they want, right?

I may have a complicated relationship with my religion and the church, but I do remember, with clarity, the teachings regarding selflessness, service, compassion, caring. Where is your outrage about this? Or, is this how you show your true colors?

Do you smugly sit there and think, “Well, I’m not sick.” SO. DID. I. “Or I’m in good health?” SO. WAS. I. “My family has no history of breast cancer.” NEITHER. DOES. MINE. “I’m too young.” ME. TOO.

Here is the bottom line: I will likely die from breast cancer. As people enjoy pointing out to me, I eat badly, I drink soda, and I don’t exercise, so if I’m not willing to help myself, when my cancer comes back, it’ll be my fault. If and when it does come back, the GOP who gleefully make it increasingly more difficult for cancer patients to receive the care needed to survive will not care. I am expendable. I am just one in millions with pre-existing conditions, with a life threatening illness, with cancer.

If and when my cancer returns and if it is HER2 again, my best shot to survive is a drug combination that costs nearly $100k. I don’t have that kind of money, and while A would get three jobs and borrow money to help pay for it, I will NOT allow cancer to take away S and AJ’s home, their security, and I will not allow it, to allow me, to ruin A’s financial future. I’ll make the choice. I will refuse treatment. I will not allow my family to endure bankruptcy due to medical debt. MY medical debt. And, ultimately, if my cancer returns, when my cancer returns, I’ll succumb to it. Therefore, what’s the point of putting A, S, and AJ’s financial futures at stake?

Here’s my request, those family members, those friends who see no problem with this happening, who gripe about the protests, who refuse to call their representatives and senators and tell them bills like this are wrong, who believe the protesters are paid protester: If and when my cancer comes back, when I die from it because the GOP is determined to strip away the healthcare protections baked into the ACA which keep me alive because the insurance companies cannot drop me, cannot charge me more, and are required to cover any treatments or surgeries I need -enjoy explaining why you voted for these people to S and to AJ. Enjoy their questions. I don’t. Just this weekend, AJ asked me what would happen to me if the cancer comes back, and when I tried to tell him not to worry about that, S got mad and told me to stop not answering the question and to answer them. So, I told them. AJ cuddled close and said, “I don’t want that to happen, Mommy.” Me neither, baby. S asked me if she could get breast cancer. I told her anyone, man or woman, can develop any cancer. She cried and said, “I hate cancer, and I hate you have cancer.” Me too, baby.

Those are the questions, the conversations. You, family member, you friend, you will face S and AJ. You will face A.

 

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

Sliding

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Found on Pinterest. No infringement intended.

I’m not sleeping again. Well, ok, that’s hyperbole. I sleep for three to four hours and that’s it. The insomnia battle started last week again. It was a stressful week for A at work, and I take everyone’s worries and burdens on my shoulders, so, last week, on top of recovering still from surgery, I fretted endlessly about A. He works so hard and is good at his job (I’m biased), but his work is hard. I couldn’t do what he does. Worrying for him triggered my insomnia. So. Here I am. Exhausted to my core, tired to my bones.

When I’m this tired, this physically and emotionally wiped out, it’s hard not to slide back into the dark places, those places where my brain tells me cancer will kill me sooner rather than later, that my children will grow up without me, that A will be a widower before he’s 40, that I’m unlucky and doomed. My brain reverts to its scumbag state, and it’s hard to claw away from that hole, that abyss. The slide is gradual, persistent, with few footholds to grab.

Work, friends, and family stop the sliding and give me footholds.

S spent part of her weekend with her best friend, and A had to work most of Saturday, so I spent time with AJ. We Pokémon-hunted at the park, I watched him play and run around, and I taught him how to make his daddy’s favorite cake frosting (dark chocolate ganache). We walked around, went to the lake, and relaxed. AJ is my goofy kid who exasperates me one second and has me laughing the next.

Work helps because I have amazing coworkers and teach at a school with a close-knit faculty and staff who watch for each other. My school has its struggles, but it truly is a great place to work. I spent some time today on the phone with a friend who is a superintendent in another district, and one of the things we talked about was my decision to leave my instructional coach position to return to the classroom and just how much I love being back in the classroom. We talked about the fact that teaching where I do makes a difference because it is a school with such a faculty who feels tied and bonded to each other. We rise and we fall together. Then, we talked about the importance of relationships from administration to faculty to students to parents to community (and the importance of a strong curriculum founded in instructional best practices, meaningful data usage from sound formative and summative assessments, discpline practices…once the two of us get going on education stuff, we go on tangents.). We had a great conversation complete with a joking “If you decide you want another job…” from him and me laughing a lot.

I’m holding on right now, staying out of the hole, and it’s hard. Exhaustion makes it so easy to see the worst in everything, to blame myself for things I have no control over (like cancer), and to believe the lies my scumbag brain whispers. It’s easier to slide, but I’ve never been a quitter…not really. As Shakespeare wrote in Caesar, “Cowards die many times before their deaths; the valiant never taste of death but once.” I don’t know that I’m valiant, but I don’t want to die before I die, as Robach says in Better. Allowing myself to slide into the dark where I listen to my scumbag brain does me no good, nor does it do anything good for A, S, or AJ.

There’s a reason I chose a phoenix for my first tattoo -cancer became my first fire, making it through an entire year of treatment became my second fire, and enduring three major surgeries and two minor ones became my third. I’m still here. I rose from those, and I feel the fire licking at me right now. If it becomes more than I can take, that’s ok, too because fire forges steel. It teaches us to be strong, to bend, to remake ourselves.

I’ll rise. I’ll persist.

I have to until I can’t, and when I can’t, it isn’t because I lost. It’s because my time came. Try as we might, death is the equalizer. It comes for us all. Until then, though, fire can burn my feathers, exhaustion can be my slide.

But, I’ll still rise.

 

breast cancer, family, kids, life, Uncategorized

Confessions of a Cell Phone Hater

I hate my cell phone.

I hate when it rings. Whenever it rings, there’s usually news on the line I don’t particularly want…or a telemarketer…or an automated message from my daughter’s school. Seriously. My phone rarely rings for a good reason. I dread my FitBit vibrating because 9 times out of 10, it’s vibrating because my phone is about to ring or there’s a text. How did I find out I had breast cancer? My cell phone. How do my myriad of doctors contact me? My cell phone.

Today, my phone rang a little after 3:00 pm. I glanced down and saw my daughter’s school. I grimaced because when her school calls, she’s either in the clinic because she’s really sick or broken a bone (the broken bone thing has happened twice), or she’s forgotten to tell me she needs to stay late for choir practice. Today, it was choir practice. Not bad news per se, but it was definitely not news I wanted because I wanted to come home and rest. My left side incision is sore after standing and working all day today. Resting did not happen.

As I left work, my phone rang again. It was Dr. He’s office. I need to come in so he can check my incisions and clear me. The only time he can see me is right after school dismisses one day next week. My life seems to revolve around doctor’s appointments and Baylor Dallas.

I hate text messaging lately, too. Most of my texts are friends venting to me because I’m the group listener and shoulder, requests for me to do something, family members telling me something has happened, or alerts to pick up a prescription from CVS. Occasionally, it’s a friend or family member texting to say hi or ask how I’m doing (or my mother-in-law asking about my bolognese recipe). More often than not, though, it’s not my mother-in-law recipe comparing or someone checking in on me. I really do hate when my text message sound dings. I steel myself before I look because it’s so often not something I want to read that I’m programmed to expect bad news. How did I find out my mom had colon cancer? A text message (from her). How did I find out about my dad’s brain tumor? A text message.

Work is crazy right now for A. He left for work at 6:30 am this morning and walked in the door at 8:30 pm tonight. The rest of this week will be like that for him…including Saturday. He has a work event to attend. He texted me at 3:30 pm this afternoon with an update and it wasn’t the best. Things are stressful right now. I take his worries and concerns on me, hoping I can make things better. I can’t. It doesn’t stop me from trying.

I hate my cell phone, but I can’t get rid of it. I need S, AJ, A, my family, his family to be able to get in touch with me. I just wish it communicated more to me than news I usually don’t want.

breast cancer, life, Uncategorized

Why it’s absolutely okay to be selfish (sometimes)

I’ve barely moved from my bed since coming home from surgery on Monday. In fact, last night, I fell asleep at 8 pm, woke briefly at 9 am this morning when A told me he and the kids were leaving for the zoo, and woke for the day around 1:30 pm.

Lazy. Sloth. Selfish.

But, hey, I did get out of bed and cook dinner…a garlicky, creamy, bacon pasta carbonara.

Then, I went right back to bed.

The pain is less. The head cold, allergy, respiratory thing I’ve had for a week now is less. My scumbag brain is…well, still a scumbag, but I’m taking great pleasure in telling it to pick-a-four-letter-word off.

Dr. He called yesterday afternoon to check on me and to give me the pathology results of my ovaries and tubes. Everything came back normal. So, at this point, I’ve done everything I can physically do to give myself the best chance of keeping the cancer from returning with two exceptions: losing thirty more pounds and stopping my one or two Dr. Pepper a day habit I’ve recently picked back up.

I wish this wasn’t something for me, or anyone, really, to worry about, the shadow of cancer. Yet, it is. Forty thousand people (give or take) will die in 2017 from metastatic breast cancer. No one dies from breast cancer that stays in the breast. It’s when it spreads that breast cancer becomes terminal. That’s the shadow. 30% of cases detected early will progress to Stage 4…metastatic disease. No cure.

After seeing 45’s budget proposal today, the steep cuts to arts, science, public welfare, health, I wonder if we will ever truly see a cure, a treatment to stop cancer, to stop breast cancer. What will happen to the cancer moonshot? I look at my friends and family who voted for this mess with the words “I told you so” on the tip of my tongue, but it does no good to point out the harm in 45’s healthcare proposal or this budget. The second I post anything politically motivated, some of my friends and family stop reading…stop reading my Facebook, my a Twitter, my blog, this post. Then, they’re irritated with me.

It bothered me a lot…once upon a time, their irritation and disappointment. It still bothers me because they choose to stick their heads in the sand, to say, “oh, it’ll all be ok.” But, see, I’m selfish. I want to live. I want to advocate against things like the healthcare bill and the budget. I put my money where my mouth is and donate to the ACLU and to local non-profit hospitals. I call my senators and representatives. I’ll attend my first town hall this Saturday (hopefully I’ll get in since RSVP’ing doesn’t actually guarantee you a space). I’ve responded to surveys. Just like with my health where I’m doing just about everything I can to maybe see 40, to maybe see my daughter go to high school, to maybe see my son go to middle school, I’m doing what I can do to advocate for myself even though people I love completely disagree with me, talk about me behind my back, call me selfish.

It’s okay to be selfish. I’ve had five surgeries in less than one year, 28 hellish rounds of radiation, 6 rounds of chemo, 6 rounds of Perjeta, 18 rounds of Herceptin. I’ve lost my breasts, my ovaries, my Fallopian tubes, and at times, my dignity, my strength, my hope. I am scarred, and it’s ok. Those scars remind me what I’ve been through, what I’m still going through, and hopefully, that I’ll survive. Sometimes, the only way to make it through this walk with cancer is to be selfish of my time, my energy, my thoughts, my self.

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And, sometimes, that’s okay.

breast cancer, life, Uncategorized

Weighty

Sometimes, I feel like cancer is a huge anvil chain-wrapped around my neck. I drag it behind me, a slow and steady trudge. I bump people I love with it, and if I don’t watch carefully, I’ll flatten them with it.

Tonight is one of those nights.

I’m snippy, bitchy, if you want the truth, because I don’t want to have surgery tomorrow. I don’t want A spending the first day of Spring Break getting up early to take me to a hospital and sitting for a few hours, waiting for me to be done, only to come home and have to help and wait on me more. He’s rewatching The West Wing and on Season 6 right after President Bartlet’s MS flare up. Yesterday, he watched the episode where the president admits to his wife, Abbey, he can’t put his pants on and needs her help. As she helps him, he says something along the lines of things like that are the reason we vow in sickness and in health.

I’m tired of being the in sickness part of A’s vows.

I know my surgery tomorrow is minor. I’m likely to be home by noon. After tomorrow, I’ll be breastless, ovary-less, and fallopian tubes-less.

My mom wonders why I’ve become a sudden lover of tattoos. It’s my way of choosing the scars carved into my skin. A Phoenix here, an areola there and there, a bouquet of flowers beside them, a dream of a delicate collection of lacework, a symbol on strength somewhere, and a wise owl standing on a stack of books with spines that read “Nevertheless, she persisted” because McConnell’s rebuke to Senator Warren has so many implications.

There are nights when the anvil of cancer becomes heavy, becomes a bigger burden than it already is. My friends are spending Spring Break on vacations. I am spending Spring Break having an oophorectomy. A minor procedure, but hopefully, the last major surgery of my breast cancer hellscape.

I’m considering having a Harry Potter style wand tattooed on my stomach pointing at my scar with the “Reparo” spell whooshing out at it. It’s my way of making light what’s happened to me.

A friend told me the same adage those with tattoos often hear, “Think of what that’s going to look like when you’re older…when you’re old and wrinkled.”

Friend, if I live long enough to be old and wrinkled, I’ll smooth my skin out and show my tattoos to my grandchildren, telling them, “Grandma got this one when she finished her year of breast cancer treatment and this one after another surgery she needed and this one because she needed a reminder and this one because…”

These are my scars to bear, my weight to bear. Let me cope however I can. I hope you never stand in shoes like mine, but if you do, here’s the best piece of advice a fellow cancer recoverer told me, a wise beyond her years twenty something, who battled cancer her senior year of high school, “Do what you need to do to get through and be damned what anyone else tells you. If the cancer comes back, you didn’t do something wrong. If the cancer doesn’t come back, it’s not because you got lucky. Cancer is a bitch. Sometimes, she takes her beating and goes away. Sometimes, she takes her beating and comes back. Whatever happens, you were there for me when I dealt with my cancer, I’m here for you while you deal with yours. No judgements. Ever. No one gets it unless they’ve been there.”

People like her, like A, like my family, sometimes take my breath away with their clarity. I see myself as a weight, a burden they must bear, but I’m not. They choose to bear my burden with me, even on nights like this when the burden is heavy, when I’m prickly, when I’m lashing out as a coping mechanism. They understand it’s me dealing with a swirl of emotions I’m not equipped to handle. Who really is? Who really is equipped to handle the glimpses of mortality, of knowing your cells, the very life of your body, wants to kill you? I may have made peace with my lot, but the weight of the lot is there, dragging behind me.