breast cancer, family, life, Uncategorized

Straight to the Feels

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

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

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

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

Betrayals linger and sting, burn and hurt.

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

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

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

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

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

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

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

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

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

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

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

breast cancer, 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, 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, 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, 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

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.

IMG_1583

And, sometimes, that’s okay.

breast cancer, life, Uncategorized

Why is my life dispensable?

In a press conference today, Mitch McConnell discussed how Republicans plan to repeal the ACA, and it was clear in the press conference, the plan is to repeal, not replace. Not now.

Repeal. No replacement.

20 million Americans.

No replacement.

I’ve been told to get a job, to pay for my own insurance, to stop living off the government.

These people refuse to understand I have a job, I pay for my own insurance, and I’ve never lived off the government. I rely on the ACA to protect me from predatory insurance practices. I rely on the ACA so that my insurance company does not drop me from coverage because I had breast cancer. I rely on the ACA so that my insurance company cannot enforce annual and lifetime maximums. I rely on the ACA so that my insurance covers the medication I need to (hopefully) keep my cancer at bay.

The press conference made it clear I will lose those protections from the insurance practices…from annual and lifetime maximums and not having to worry about the insurance company kicking me off my policy because I developed cancer.

How nice it must be to live in a world where no one gets sick. How nice it must be to feel that kind of superiority.

I was once that arrogant…thought I’d never need my health insurance, but I paid for it every month just in case.

2015. Just in case happened.

Breast cancer.

Age 37.

Some have insinuated to me that it’s my fault, which I guess is why those same people see my life as less, as dispensable.

Worthless.

When illness comes knocking on your door, I hope you never find out how it feels when someone blames you for your illness. You did something wrong. You weren’t good enough. This was in the plan for your life. Something good will come of it. Have faith. Just believe.

The ACA helped save my life.

You voted for a man and a party that see people like me as less, as other, as dispensable.

You voted against my life.

Don’t tell me to get over it. Don’t tell me not to worry about it. Don’t tell me this won’t happen.

It’s happening.

I did something I rarely do: I called my senators’ offices this afternoon and talked to an aide in their offices. I told them my story. I doubt very seriously it’ll matter, but I cannot stay silent anymore. These men, Senator Cornyn and Senator Cruz, are my elected senators. I may not have voted for them, but they represent me nonetheless. So, someone in their offices can listen to my story. They may forget, it may go nowhere, but at least I tried.

I just wish my voice mattered, that my experiences mattered.

 

breast cancer, life, Uncategorized

Advocacy

The San Antonio Breast Cancer Symposium (#sabcs16) is going on right now. It’s a huge and significant conference for those who specialize in breast cancer or have been touched by breast cancer. Results from clinical trials are presented, and breast cancer doctors, researchers, hospitals, etc. attend from all over the world. My oncologist, Dr. O, attends every year and is a regular presenter. This year, Baylor Dallas presented its findings of the cold cap clinical trial I could have been in but declined.

As I followed the hashtag on Twitter today, a picture from a presentation popped up showing the cost breakdown of some fundamental breast cancer treatments.

I was on pertuzumab (perjeta) and trastuzumab (herceptin). Look at the cost. This is not okay, and without the ACA, my insurance company could have not only declined coverage but dropped me simply because of breast cancer. This is NOT okay.

 

If my cancer comes back and is HER2+ again, T-DM1 is my best hope, to the best of my knowledge. To be honest, I try not to research my options if I go Stage 4. I can’t handle that thought. Look at the cost of it, though. This is NOT okay.

For you who advocate against the ACA, and truly believe in the “repeal and replace” mantra, DEMAND your representative support something that is more than HSAs and insurance across state lines. There MUST be protections against predatory insurance practices, and there must be something done to bridge the access gap. Do NOT be as arrogant as I once was to believe breast cancer wouldn’t happen to me. It did. I became the 1 in 8 at 37.

Another piece presented at SABCS16 reported about the sobering data showing diagnosis prior to 40 increase the likelihood of reoccurrence. Still another reported there has been an increase in brain mets for early stage diagnosis that later go Stage 4. This is NOT ok. We need more research for Stage 4 and more treatment options for all breast cancers. We need the people at SABCS. We need the ability to access and afford the remarkable discoveries they make.

Healthcare and access should not be a privilege. DEMAND it be as it should be-a right for all of us. After all, one of the unalienable rights promised by the Declaration of Independence is that of life. Life, liberty, and the pursuit of happiness. DEMAND access to healthcare as a right, not a privilege.

Today, I am grateful for the SABCS, for Dr. O, and for the researchers who discovered herceptin and perjeta. I’d be dead right now were it not for them.

breast cancer, family, kids, life, Uncategorized

Voiceless

My voice didn’t matter last night.

I’m a woman. I have breast cancer.

I’ve been told I’m a sore loser. I’ve been told the despair I feel is unjustified. I’ve been told to have faith in our system of checks and balances. I’ve been told the way I feel doesn’t matter because Jesus is on the throne. I’ve been told to just have faith.

Earlier in the week, I posted on Facebook that I felt some of my friends and family were voting against my life. Today, I went onto Facebook and found some of my friends and family gloating about what happened last night. Not celebrating. Gloating.

I unfollowed them. I unfollowed former students, former colleagues, family members, lifelong friends. I didn’t unfriend. Not yet. I didn’t block. Not yet.

But, I’m close.

I’ve been told to accept what happened. I’ve been told the threats of the campaign won’t come to fruition.

I’m 38 with breast cancer. My faith in the good of people and the good of Fate is pretty much null and void.

I struck a nerve with people on my Facebook with my post earlier this week. I said, in the post, that you don’t get to say you love me or care about me by casting a vote that could take away my protections built into the ACA. I got messages telling me how stunned and angry they were with me. So, I posted an apology and hid the post from my Timeline.

I wish I hadn’t.

I’ve been told I’m becoming mean and bitter. “I don’t like this side of you.”

Well…

I’m hurt. I’m heartbroken. I’m disheartened. I’m betrayed. I’m angry. I’m scared. I’m a woman. I stand to lose a lot if this president, cabinet, and Congress do what they promised during the election. And, I’ve always struggled with forgive and forget. With this, I don’t think I can forgive and forget. Move on. So, that does make me mean and bitter. I know that.

I also know, when you’ve been told, over and over, by people who “care” about you, that “you’re not a nice person” or “you’re just like so-and-so” there’s probably some truth to it. Maybe this side of me, the side that cancer and the campaign, brought out, it is not who I am at my core, but it is a part of me. I can accept it. Can you?

At my core, I am a scared, vulnerable, heart-on-my-sleeve, people pleaser. That part of me gets overlooked by the aloof mask I wear…a mask I wear to protect the core of me. Can you recognize that part of me, too? Probably not. Most overlook it.

Overlook me.

I hoped for a future where my health insurance would not be at risk, where my daughter didn’t have to be as concerned about her place in the world simply because she was born a female, where my son didn’t need to be told the things said by the man my country elected are wrong, where my friends who gained freedoms over the last several years would not fear losing those freedoms, where the fight for equal rights was no longer a fight but a given.

I’m hurt. I’m heartbroken. I’m disheartened. I’m betrayed. I’m angry. I’m scared. I’m not sure I’ll ever forgive those who say they love and care about me when they’ve given me this person to make decisions that affect my health, my career, my life.

I have to live with your choice.

I just hope I get the chance to live with your choice.