breast cancer, life, Uncategorized

Travesty

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The Senate released its version of the AHCA this morning.

Everyone in the US should be horrified. It does the same despicable things as the House version.

Tax cuts for the wealthy on the backs of of every other American.

On the backs of cancer patients.

On the backs of the disabled.

On the backs of the poor.

On the backs of the elderly.

On the backs of the chronically ill.

On the backs of children.

On the backs of those who need protection.

I have employer provided health insurance. I have had insurance my entire life. I went from my mom’s plan to my plan. For seventeen years, I’ve paid for my health insurance, for fifteen years the only times I needed it were pregnancies, but when I developed breast cancer, I knew my insurance could not drop me, could not refuse to cover treatments and surgeries, and it could not enforce an arbitrary financial cap or limit as insurance companies did prior to the ACA. Fun fact: My insurance had a million dollar lifetime cap prior to the ACA.

Chemo: $2000+ per round. I had eight rounds.

Herceptin: $400 per round. I had 11 single rounds.

Bilateral mastectomy with auxiliary lymph nodes dissection: $75k+

28 sessions of radiation: $111k

Reconstruction: 80k+

Tamoxifen: $8 a month for 16 months

Arimidex: $12 a month, just started, God willing, I will be on for 120 months

Now, some basic math.

Chemo-estimated total cost: $16k

Herceptin: $4400

Bilat Mx: $75k

Rads: $111k

Recon: $80k

Tamoxifen-estimated total cost: $128

Arimidex: (estimated for 10 years) $1440

Estimated total for treatment for Stage 2 ER+/HER2+ IDC BC: $208k+

Thanks to the ACA and my employer provided health insurance, I paid a little under 10k out of pocket…that was my maximum. I didn’t see a bill for anything above because I hit my out of pocket max from port surgeries, biopsies, MRIs, ultrasounds, mammograms, and pathologies. However, NONE of that takes into account the money I spent out of pocket on specialist copays, ovary removal day surgery, X-rays, scans, or the little things I’ve forgotten.

Republicans, the Senate, and the House, through these bills, make it clear they believe those who develop life threatening medical conditions are not deserving of consumer protections from the health care industry. EVERYONE, except, I guess the uber wealthy, was one medical emergency or medical catastrophe away from being financially wrecked prior to the ACA. What moral, ethical, or logical reason is there for us to return to that kind of system?

I posed that question to my senators. I’ve called Senators Cornyn’s and Cruz’s DC offices at least twice a week, if not more, since the House bill passed. I’m on a first name basis with one of Cruz’s DC staffers. I’ve faxed. I’ve emailed. I’ve cried on the phone with their staffers, asking them to explain to me why my life is worth less than someone who hasn’t become ill…yet.

Yet.

Do Republicans truly believe they will not develop illnesses or conditions?

I truly, 100% believed I would NEVER develop breast cancer. I knew the statistics, 1 in 8 women, but I TRULY believed I would NEVER be that one. My family has NO history of ANY female related cancers. Lung cancer? Yes. My grandfathers smoked like chimneys in a northern winter. Colon cancer? Yes. Get screenings, folks. Colonoscopies save lives. Melanoma? Yes, and a rare one at that -my grandmother died from metastasized OCULAR melanoma. Breast cancer? Nope…not until me.

I was arrogant. I was selfish. I was smug.

Karma decided to say hi to me at 37 years old.

If you truly believe I must have done something wrong to develop breast cancer, get off my blog. No one does anything wrong who develops cancer.

If you read this and decide to be smug like I once was, may the force be with you because the American Cancer Society says 1 in 2 Americans will develop cancer in their lifetime.

If you read this and support the GOP and the AHCA, I’d like for you to take a minute and read the letter I sent to Senator Cornyn, and I’d like for you to be sure you’re okay with your answer to my closing statement of my letter. No one will know your answer but yourself. Make sure you’re good with it. I’ve also included his canned reply.

 

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I think his reply answers my statement. To him and the GOP, breast cancer makes me less.

But, I am not less, and I will call his and Cruz’s offices…again and again.

I will continue sharing my story because I know there are thousands like me.

I’ve shared my story with Indivisible, with other senators, and with The New York Times.

Wisdom. Compassion. Courage.

The three moral qualities of humanity.

Where is yours?

 

 

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, family, kids, life, Uncategorized

I need something

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I need something to do, something to take my mind off my upcoming 5-month check up, something to take my mind off cancer, something.

I’ve read two books in the last six days.

I’ve taken my kids swimming four times in the last five days.

I’ve seen two movies with my kids in the last seven days.

My kids have pretty much done everything possible to shove summer vacation into seven days.

My mind keeps whirling.

I haven’t slept well in weeks.

I can’t shake the ten pounds I’ve gained since the oophorectomy.

I overspent our budget. A lot.

Summer is not starting out the best…

breast cancer, life, Uncategorized

You need to be a happier person

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Today is World Cancer Survivor’s Day. I don’t know if I was supposed to celebrate or punch a wall.

I did neither

Instead, I sobbed and yelled at God today.

I know I’m not worthy. I know I’m not the greatest person. I make mistakes. I’m prone to jealousy and melancholy. But. I try. I love with my whole heart. I hate the lack of compassion in the world. I’m scared of the hate in the world. I know I’m not worthy. I know you don’t particularly care about me. I’m tired of being told you love me, you gave me this burden to grow, to show others how to move this rock. I’m tired. I just want to see my babies grow up. I’ve watched 15 high school graduation as a teacher. I’ve sat in 2 as a relative. Will I sit in S’s? In AJ’s? I know I’m not worthy. I know you don’t like me. But, dammit, I’m not the worst person in the world. I’m not the worst person in my family. People say you only give us what makes us stronger, but that’s crap. If this was to make me stronger, what’s next? All this has done is make me weaker. I know I’m not worthy. I’m just me. I wish I were good enough.

A told me he wishes I’d find some happy. “If you keep being miserable for something that hasn’t happened, you’re wasting time you could be happy.”

I know that. I do. I know being miserable, on guard, wondering when the cancer will return to rot my life as it rots my body, does me no good. I know.

But, on this graduation weekend, on this World Cancer Survivor’s Day, I wonder how many more I’ll live to see, and I damn myself for having cancer in the first place because if I didn’t have it, I’d never wonder if I’ll see my babies grow up, and I’d never give more than a passing thought to cancer.

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, life, Uncategorized

When good is never enough

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I hit my limit at 7:32 pm tonight. A and S sat in the living room watching Survivor. AJ kept coming in the master bedroom where I tried to relax, find my center after reading post after post on Twitter and Facebook celebrating the GOP has enough votes to pass AHCA. My anxiety spiked.

I fled.

I grabbed my car keys, shoved my feet into some flip flops, and I fled into the woods. That’s the great thing about my part of Dallas County -we still have wooded, forest like areas. I fled into one with well worn footpaths, where runners looking for solitude trot along, where rabbits stare suspiciously, where alone means alone. Alone with yourself, your thoughts, your fears.

Your truth.

I’m never enough. That’s my truth. As I walked the paths tonight, staying clear of jogging teenagers and happy dog walkers, that’s the thought which went through my mind -continuously.

Insidiously.

If I were a better teacher, my students wouldn’t still struggle with concepts we’ve worked on since September. If I were a better wife, A and I wouldn’t struggle with our budget because I spend too much. If I were a better mother, AJ wouldn’t get in so much trouble at school. If I were a healthier person, maybe I wouldn’t have gotten cancer. After all, healthy people lead good lives and don’t get sick.

Growing up, I never felt like I was good enough. Pretty enough. Smart enough.

Middle age, I still don’t feel like I’m good enough. Smart enough. Pretty doesn’t even factor in anymore. My self esteem is another thing cancer put paid. I like the way my hair grew back, but that’s it. My skin is dull, my face aged. I look like my dad’s mom minus the wrinkles. My body is scarred. The tattoos only hide so much, only make up for so much, only bolster so much.

In his Academy Awards speech for Dallas Buyers Club, Matthew  McConaughey said one of the things he needs everyday is someone to chase -his hero, himself in ten years. He said he knows he’ll never catch his hero, but it gives him something to chase. A dream. A what-might-be. A wish.

I think ahead, myself in ten years. 49 years old. Mother to a 21 year old and an 18 year old. Aunt of a 27 year old. 25 year wedding anniversary. 30 year high school reunion (not that I went to the 10 or 20). A dream. A wish.

My luck tends to suck.

I don’t see myself surviving to chase myself in ten years. Right now, I’m just existing again, and right now, I don’t care that I’m just existing.

My social currency is spent right now, my mind space crowded. I need quiet, time to regroup. Gather myself.

Find myself.

I’ll be ok. I always am. I just need some time to gather, to regroup, to let go the stress the end of the school year brings. Feeling never enough isn’t necessarily a bad thing. It gives you something to chase -yourself. You’ll never catch yourself unless you give up, and I might be many things, but I’m not a quitter, not when it matters. I’m not a hero, don’t want to be. That’s not the idea for me to chase.

I chase myself because I matter…even when I’m at my worst. I matter.

breast cancer, life, Uncategorized

Wrecked

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I had to work a student event yesterday with several friends and colleagues. One of my colleagues (and friend), as we stood off to the side talking, commented to me that she didn’t understand how I handle everything thrown at me with a smile and positivity. I told her, “Girl, please,” with a smile and a joking tone to my voice. She doesn’t know how negative I really am, and she doesn’t believe me when I tell her if you look up pessimist in the dictionary, there will be a picture of me.

At one point last year, I was told that I can only complain so much before I become like the boy who cried wolf. People become immune, even apathetic, when all you have are complaints. I’m a negative person by nature. I’m a pessimist. I’m not even a recovering pessimist. I’m a pessimist to the core. Last night, my brother-in-law told me he never really believed in the whole “power of positive thinking” thing until recently when he decided to look for the positives, and, as he put it, now, he notices nothing but positive energy around him and his home.

Must be nice.

I’m well aware that I’m the problem in my unhappy equation. Just because I’ve made peace with the fact I have cancer and will likely die from it at some point, doesn’t mean I’m happy about it. I’ve just accepted my fate.

But, I’m not happy about it.

This morning, as I prepared to get up, get dressed, and head up to my school to work in my classroom (submitting AP Seminar work to Digital Portfolio is not fun…love the class, love seeing what my students have done…do not love the enormous extra grading load), A came in the room, sat on our bed, and asked, “What do we have to do to make it happy or relaxing or unstressful for you here at home?”

My answer was snarky, yet true: Get a DeLorean and take me back prior to cancer. I want my sense of health, well-being, and youthful immortality back. I hate who I’ve become because of cancer. I’ve tried liking her. I’ve tried understanding her. I’ve tried accepting her. I don’t like her. I don’t understand her. I don’t accept her.

She lives with the knowledge that cancer is her reality and will likely be the cause of death on her death certificate.

She lives with the knowledge that she will likely die before her children grow up, go off and make a mark in the world. She lives with the knowledge she will likely not be around to see her daughter off on her first date, to help her pick a prom dress, to see her high school graduation, to move her into college, to see her graduate college, to see her become a veterinarian, to help her pick a wedding dress, to see her make her dreams come true.

She lives with the knowledge she will likely not be around to see her son ask someone out on a first date, to help him learn to shave, to pick out his first real suit, to see him graduate high school, to move him into college, to see him graduate college, to see him become an engineer (or politician…or police officer…or cartoonist -he has many “what I want to be when I grow up” dreams), to cry when he proposes, to see him make his dreams come true.

I still struggle with the question “Why me?” I know the response is “Why any of us?” I know the answer is bad luck…bad genes…randomness. I play enough video games to know I suffer from bad RNG luck (Random Number Generator). Still, the part of me that rages against the fact I have cancer wants to know what I did that was so wrong, so bad. Some will say that means I haven’t made peace with the fact I have cancer. You’re wrong. I’ve made peace with it. I just don’t like it.

I struggle every single day, but I put forth the image that I have it together, that I’m fine, that life is grand. Life is grand, but I’m not. A quarter of cancer patients struggle with depression. Almost a quarter of cancer patients struggle with cancer-related post traumatic stress. Take someone like me who was already pessimistic before cancer and throw in cancer, cancer treatments, cancer surgeries, and continual doctor check ups, and those are the ingredients for an unhappy stew.

I’m unhappy.

How selfish of me to say it, to admit it. After all, I’m still alive. I’m done with required surgeries, for now.

Friends and family are tired of my “woe is me” and “I’m so unhappy” routine, but the thing is, I hide it 9 times out of 10 because I don’t want my friends and family to be unhappy with me. I want to fix it. I want to fix me.

I’ve been told by others to fix my mindset, to start thinking positively and my negative, pessimistic thinking is a conscious choice on my part. It is. I know that. But, I also know, deep down, I’m afraid.

I’m afraid if I let go of the negative and try to be positive, the cancer will come back.

So, I struggle. I want to be happy, but I’m afraid if I choose to be happy, the cancer will come back.

A tells me all the time the cancer will come back no matter what if that’s what’s meant to happen to me. My thought is that if I rage against it, maybe that’ll keep it away. How do you rage against the dying of the light when your light is more of a dusty, after the storm, gray?

Hearing the words “You have breast cancer” wrecked me. If it can happen to me, to my friends, it can and will happen to anyone, including me. Again.

I don’t want to be wrecked again.

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, life, Uncategorized

Is it confidence or arrogance?

I’m mad at myself tonight. It’s a great way to end Spring Break.

As I took a bath, my thoughts turned to last year -I’d just returned to work and started radiation. I did everything the doctors told me to do. I endured 28 sessions of radiation and dealt with skin so burned it’s STILL tanned and stiff…sometimes uncomfortable.

I’m still doing most of what the doctors tell me to do, but tonight, I’m mad at what I’m not doing. Not losing weight. Still drinking Dr. Pepper. Not exercising. Still sleeping badly. These are things I control, but I’ve convinced myself a couple of Dr. Peppers won’t hurt, it’s okay if I haven’t lost more weight since I lost 30 lbs after I was diagnosed, I walk a lot at work (which is a lie), being a night owl isn’t a bad thing. I think I’m being arrogant. The farther away finishing chemo and the mastectomy get, the more arrogant I become. Or, I am becoming more confident?

I don’t know which it is for me…arrogance by believing the cancer might really be gone, or confidence because I’m still alive. I know I was arrogant before my diagnosis. I truly believed I would never develop breast cancer because my family had no history of it, and I believed even if I did, I certainly wouldn’t develop it for a long time because I’m young.

That was arrogance. Fate, karma, God, whatever decided to put on the hat and remind me who’s really in charge -not me.

So, is it arrogance or confidence now? I want to believe the cancer is gone, and I’m going to be like two of my friends who are dozen-plus years survivors of breast cancer. At the same time, I know Fate, karma, God, whatever could go, “JK,” the cancer comes back, and kills me in a matter of months. Still, isn’t it arrogance to think the cancer is gone, that it won’t come back? Isn’t that the same as believing I’d never develop breast cancer in the first place?

I feel like I’m being arrogant. So, I’m mad at myself.

And, to be honest, I’m mad at Fate, karma, God, whatever because this happened to me. Oh, I may have made peace with the fact it happened, but that doesn’t mean I can’t be angry about it, too, from time to time.

I’m stuck in cancer purgatory because I feel as though it’s arrogant to think it’s not going to come back, yet, I’m mad at myself because I’ve allowed part of myself to start believing it won’t come back because I’ve done all the things.

Plenty of people do everything the doctors say and more, but it comes back, meaner, nastier, harder. Plenty of people are humble and gracious as they deal with cancer and the aftermath. Then, there’s me, neither humble nor gracious.

Isn’t that arrogance, then? Shouldn’t smiting follow?

Purgatory…cancer purgatory. It’s not a pretty place, and neither is my head nor my heart tonight.

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.