breast cancer, life, Uncategorized

Every Morning I Relive My Diagnosis

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

Five pills. Every. Single. Day.

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

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

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

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

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

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

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

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

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

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

do everything wrong and live to be 101.

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

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breast cancer, life, Uncategorized

Where Pinktober fails

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

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

Thanks cancer…

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

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

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

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

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

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

breast cancer, life, Uncategorized

Cancer Care and Politics #4

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My Recent Calls this afternoon

I was healthy until I wasn’t. I didn’t do anything wrong no matter what my scumbag brain tells me. Breast cancer isn’t my fault. I was healthy until I wasn’t.

Why do I have to call my senators and beg them not to vote for something that will allow my insurance company to increase my rates, impose lifetime and annual limits again, or decide I’m too expensive and drop me? Why do I have to call and beg my senators not to kill me?

I need someone to explain to me why the GOP is so heartless. Is it really just money? I’m not worth it because I’m solidly middle class? Because I wasn’t born into a wealthy family? Because I work to serve my community instead of making millions (as if…)? Why am I unworthy? Is it, as some senators have said in interviews, because people like me must have done something wrong to become sick? There but by the grace of God go you if you truly believe it. I was healthy until I wasn’t.

I can’t afford for lifetime and annual limits to return. If they do, my life is worth a whole lot less than security for A, S, and AJ. My children do not deserve to lose their mother, no child does, but more, if my children have to lose me, they do not also deserve to lose their home and financial security because my care would cost so much.

I know what it’s like to grow up with financial instability. My children will not have that experience. I know what it’s like to go through a bankruptcy as a child. My children will not have that experience. The stress, the fear. My children will not have that experience. I will forego treatment because their future means more to me, and let’s face it, if my cancer comes back, that’s the ballgame. I want to live, to see S and AJ become adults. I want to live.

But, I had cancer and have no idea what’s in front of me.

I was healthy on August 1, 2015. Yes, I suspected something wasn’t right, but suspicions can be wrong. I wish mine was. I was healthy until I had cancer on August 27, 2015.

I call my senators’ offices nearly everyday. I tell my story over and over. It falls deaf on my senators’ ears. Yesterday, I asked the young man who answered the phone at Senator Cruz’s why Senator Cruz seems to hate constituents like me. I’ve asked the same question of the young men who have answered the phone at Senator Cornyn’s office. I always get the answer that neither senator hates constituents like me but cannot respond to how else people like me are to view votes for bills that could become our death sentence.

I’m tired of begging Republicans not to vote for something that could become my death certificate. I’m tired of being viewed with both pity and derision by people who are healthy, by Republicans. I was healthy until I wasn’t.

Last night, A sat with me for an hour as I sobbed about how scared I am the cancer is back even though I feel no different than I did 12 weeks ago. I didn’t feel sick on August 26, 2015.

But, I was.

A sat with me, let me cry, offered no platitudes. He listened to me fear the cancer, confess how ugly I feel, relate my shame for gaining weight, and despair for my future. Once I talked myself out, A talked about his day, how much he enjoys his new job, and the minutiae of his day. He soothed. Then, he scolded.

I woke up steadier today. But, I’m still sad, so sad, that so many view my life as less, view me as less.

I hope those who support this deathcare movement, this abomination of a bill never feel the way I feel because of them -less, ashamed, terrified. I hope they never have to face a family member or friend whose life they’ve put in danger. I hope they find the compassion they’re missing. I hope the almighty dollar becomes less important to them. I hope they find their humanity and humility.

The arrogance of those who believe they will never be affected by this healthcare proposal astounds me. This will affect everyone in some way.

Once upon a time, I was arrogant about cancer, especially breast cancer. I truly believed I would never have it, but if I did, it would be when I was much older. I truly believed I wouldn’t fear the pink ribbon, Pinktober, and Pink Outs. I truly believed my life would never revolve around doctor’s appointments, blood works, X-rays, and surgeries. I was 37. I was healthy.

Then, I wasn’t.

breast cancer, life, Uncategorized

Pretending

sometimes all you can do

I’m tired…

of Republicans trying to kill me through healthcare bills that are nothing more than deathcare bills

of feeling like my concerns don’t matter

of cancer

of worrying the cancer is back

of wondering what I did wrong

of wondering if I’ll see my kids grow up

of not being good enough

of being told “it’s going to be ok” when you don’t know that

of not sleeping

of letting myself down every morning by sleeping through my alarm instead of getting up early and going for a walk

of crying from exhaustion

of feeling I don’t matter

of being my own worst enemy

I’m spent.

I’m a wreck wearing a mask, dreading my next check up, terrified of seeing Dr. O because what if the cancer is back even though I don’t feel any different than I did 12 weeks ago? What if the scans show it’s back? What will I do?

I’m tired.

I’m spent.

I’m a wreck.

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.