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, family, kids, life, Uncategorized

Rule of Fear

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I broke down in tears yesterday right before I prepped dinner. I’m pretty good at hiding my tears, or I try to be. I don’t want to worry S or AJ or A. The thing is, though, I’ve been worrying A for weeks. He knows I’m worked up about my upcoming five month check up. He’s not unobservant. It’s his insight, his ability to see the trees and the forest, and his compassion that make him so good at his job and with relationships, which he has to be for his job, too. Building strong, productive relationships is a huge part of his job. It’s not something he takes lightly at work or at home.

He doesn’t tolerate me being down for long. He wants to fix it, to fix me, yet there is no fix.

When he realized I was crying, he followed me into our bedroom, sat down beside me, and asked, “When do you see Dr. O?”

“June 20th at 1:00.”

“So, nine days. You want to be miserable for nine days, there’s nothing I can do about that. It’s your choice. What I can tell you is what I’ve told you for years -when all you do is fret over the future, you steal the joy from now, and you’ll never get now back.”

He’s right. I know he’s right. I’m doing this to myself because I’m scared the cancer is going to come back, and I can’t do a damned thing about it. So, I’ve dug myself into a hole that’s dark, and I’m miserable.

Do I want to be like this for nine days? No. Absolutely not.

The truth is I’m afraid if I let go, I’m inviting the worst to happen. If I stop worrying, I feel like I’m opening myself up to my fears coming true.

A coworker posted an article on Facebook this weekend about the neuroscience of happiness. She’s an RN, and I swear, this article was meant for me to see. It states, “Here’s what brain research says will make you happy:

  • Ask “What am I grateful for?” No answers? Doesn’t matter. Just searching helps.
  • Label those negative emotions. Give it a name and your brain isn’t so bothered by it.
  • Decide. Go for “good enough” instead of “best decision ever made on Earth.”
  • Hugs, hugs, hugs. Don’t text — touch.”

I stopped the gratitude journal I was told to keep by my cancer counselor. That was stupid of me.

When I was a teenager, every single weekday morning, I did a devotional before school began. I found these devotional guides, I can’t even remember what they’re called now, but every page or so was a story or prompt or Bible verse and guided questions. Each ended with a fill-in-the-blank prayer which focused on the lesson. I don’t want a Bible based devotional, though. As I’ve said before, my relationship with God and church is complicated at best. It’s just not as simple as it was when I was a kid. Too much baggage. Too much heartbreak. Too much disappointment.

I do want a meditation journal, though. Something similar to what I had as a teenager with guided lessons and specific targets. I remember how calming and soothing it was to start out each school day with it.

I bought the Sunrise Manifesto a few weeks ago. I haven’t started it, yet, but maybe I will this week. Every lesson begins with a gratitude question. Neuroscience says just searching for gratitude is enough to trigger the right brain response. I’ll give it a go. My current brain response sucks.

As for naming the negative feeling, it’s fear. I’m freaking afraid (not the f word I want to use, but my mom reads my blog and would yell at me, and yes, I’m 39 and still have a healthy fear of my mom).

I’m scared.

I’m terrified.

I once read to help yourself with your fears, look at yourself in the mirror and say the fears out loud. I’ve done that.

I. Have. Cancer.

It’s my reality. I. Have. Cancer. I’ll always have cancer, even if I live to my hundreds and die in my sleep like my great-grandmother who died in her sleep at 101. Remission doesn’t mean cured. It means dormant. Asleep. Undetectable.

I’m scared of the cancer returning, of not being around for S and AJ. I’m scared of the cancer returning, of not being able to work and ruining A’s financial stability. I’m scared of the cancer returning, of dying a slow, painful death.

I’m. Scared.

There. I labeled the negative emotion. Now, I have to decide how I want to spend the days leading to my five month check up. Day-by-day. As my mom tells me, one day at a time. That’s good enough.

S and AJ are full of hugs. It’s the first thing they do after waking up. They come find me and give good morning hugs. That’s good enough.

All of this is literally in my head. The choice are mine. I can let my fear of cancer rule me or I can rule my fear.

It’s ruling me right now. I can either say enough or remain miserable.

It’s so hard to be bigger than my fear, and truthfully?

I don’t know if I can.

breast cancer, family, kids, life, Uncategorized

I need something

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

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

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

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

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

My mind keeps whirling.

I haven’t slept well in weeks.

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

I overspent our budget. A lot.

Summer is not starting out the best…

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

A Friday Full of Failure

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

Part 1 -The first failure

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

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

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

Part 2 -The second failure

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

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

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

Part 3 -The third failure

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

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

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

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

Part 4 -the fourth failure

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

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

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

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

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

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

Part 5 -the last failure on Friday

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

But…

She fails on this Friday.

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

She fails on this Friday.

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

She fails on this Friday.

She fails.

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

So, she’ll try again.

She’ll fail again.

And so the cycle goes.

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

Sliding

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Found on Pinterest. No infringement intended.

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

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

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

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

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

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

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

I’ll rise. I’ll persist.

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

But, I’ll still rise.

 

breast cancer, family, life, Uncategorized

Not as planned

I slept for about an hour Sunday night. I watched my clock lurch closer and closer to 5:15 am, Monday morning, when A and I would need to get up and dress. When I got home yesterday afternoon, I slept for hours. Consequently, I barely slept Monday night.

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From someecards…no infringement intended

I thought having my ovaries and tubes removed would be a cake walk compared to being sliced from hip bone to hip bone as I was over the summer for my DIEP reconstruction. I was wrong. I’m so sore, especially on my left side where Monday’s surgery placed a larger incision than that on my right. Also, since the incisions go through abdominal muscle, doing anything besides staying in bed hurts.

Sunday night, I posted a Dear Cancer on ihadcancer. In turn, ihadcancer posted my Dear Cancer on Twitter.

I am really tired of surgeries. I’m tired of cancer. I want this to be done, to be the last surgery, for the cancer to stay away.

To top off today, I shattered one of my back molars when I hit down on a chip at lunch. That moment turned into the straw that broke the camel’s back for me. I’m absolutely terrified of dentists, so when it shattered, I cried. It doesn’t hurt at all. Still, it’s not something else I wanted to deal with right now. So, like Scarlett, I’m choosing to deal with it tomorrow…whenever that tomorrow might be. It won’t be this week, though, if I can avoid it.

I told A that I’m embarrassed by me. Chemo wrecked some of my teeth. This molar won’t be the last tooth to give me trouble. I have more scars now than I can count on two hands. Most of them are located from my neck to my waist. I have nerve damage from surgeries. I have chemo brain. My eyebrows came back thin and sparse. The one thing I actually like is how my hair came back…same color, but it’s thicker than before and a little less fine. I’m wearing it in a pixie cut that I really like. Otherwise, I feel a mess.

It feels like I’m at another fork in the road, a curve on the cancer coaster. I don’t know what waits ahead, what lurks. Once again, I have no control.

I don’t like feeling powerless. I thrive in routines. My mom will tell you I’m particular and don’t react to change well. She’s not wrong. I didn’t react well to change as a kid, and I don’t as an adult. I like the security of the known, and with cancer, there is no known…not really.

 

breast cancer, life, Uncategorized

Today is not a good day

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Found via someecards. No infringement intended

When I get overly tired, I have a hard time keeping a lid on my emotions.

I’m overly tired today.

I haven’t slept well in awhile. It’s my ankles and feet. They just ache. I’m coping with it, but it’s starting to take its toll. I toss and turn and stretch my legs for at least an hour after I go to bed. I have a bedtime ritual I’ve followed for as long as I can remember. I go to bed. I turn on some music. I read for an hour. I go to sleep. Now, it’s I go to bed. I turn on Pandora to the filmscore channel I created. I read for an hour, surf Twitter for an hour, or Pin for an hour. I turn everything off. I toss. I turn. I stretch my feet. I stretch my legs. I toss. I turn. Eventually, I fall asleep. Then, I do it all over again the next night. Nothing, so far, seems to really help for long.

It’s a side effect. As long as I’m alive, I suppose I’ll struggle with it. I cope with it as best I can, but today…I’m overly tired. I’m emotional. My ankles hurt right now, a deep ache.

I see Dr. O again in a little over a week. It’s my first time seeing her since I finished Herceptin treatment. It’s my 20 week check up. I’m not looking forward to it. I’m scared…worried, really. I’ve done so much over the last month I’m not supposed to do. I’ve gained some weight. I’ve eaten a ton of sugary things. I’ve drank a lot more soda. I feel like I’m doing everything wrong, and so, if there’s something abnormal at my appointment, it’s my fault. I’m stressed. I’m not sleeping well. I’m not eating well. I’m not drinking well.

If the cancer comes back, it’s my fault. That’s my truth today, and it hurts. It should hurt. I know better. Yet, here I am.

When I was in my teens and twenties, I was always waiting for the other shoe to drop. Now, I’m waiting for the cancer to return. It’s a horrible way to feel, to feel it’s your fault you developed cancer in the first place, and to know if it comes back, it might be your fault.

This is where I am today.

breast cancer, life, Uncategorized

Subtypes and Subtext

I had a three month check up with Dr. H yesterday. Considering it hasn’t been all that long since I saw her, there really wasn’t much to check up. The lumps in both foobs feel the same. The radiologist told Dr. H he is confident they are, as he told me, oil cysts and fat necrosis. She wants to see me again in three months. By then, I will have (finally) seen Dr. L for my follow up and will know what his recommendations are regarding the lumps and what surgeries he recommends, if any.

The only new thing that came up yesterday is I asked Dr. H to go over the final pathology report with me again because neither she nor Dr. O had gone over the report’s addendums in depth with me. Dr. H got most of the addendums after she had called me with the initial report. Dr. O had gone over with me the addendum that revealed the cancer left behind was ER positive. There were two other addendums, though. I wanted, needed, someone to explain to me what everything meant. So, Dr. H sat with me and walked me back through that last pathology report.

Most everything was what I already knew. What I didn’t know was that the pathologist reported there was a definite response to chemo based off the tissue, which I knew since the HER2 cancer was gone, and the addendums confirmed there was absolutely no HER2 cancer found in what cancer remained. The cancer that remained was a slow growing ER+ that typically does not respond well to chemo but responds really well to drugs like tamoxifen….and AR+ cancer.

AR+ isn’t really it’s own subtype. There’s some interesting research being done on it, particularly with triple negative breast cancers that are found to be AR+, but AR+ is just a side note for me because, for me, being AR+ changes nothing. I was HER2 positive. I am ER+. Dr. H said this is nothing to worry about and is actually a good thing. For my subtypes of cancer, treatments exist that are effective, and I’ve had them all, or are on them now. I absolutely believe her.

I see Dr. O in a couple of weeks for my 20 week check up, and I plan to ask her to explain the AR+ in more depth, but ultimately, it changes nothing. I’ll still be on tamoxifen for another year. I still need an oophorectomy. I’ll switch to armidex after that, and God willing, I’ll be on armidex for ten years (provided I don’t lose my health insurance because of the new Congress and their zeal to yank health protections away from us, but that’s another post…).

Somehow, Dr. H gave me some peace of mind yesterday. I’m not sure what, why, or how, but she did. Now, if we could only figure out how to help my ankle, foot, and heel aches, and if we could figure out how to help me sleep.

breast cancer, family, kids, life, Uncategorized

A day of frustrations

I barely slept last night. I couldn’t get comfortable. Our new kitten decided he needed to sleep on me. It was cold in our room. It was hot in our room. I heard a noise. The cats decided to run through the entire house at top speed.

I scrolled through Twitter and saw all the Tweets of what the new Congress plans on doing to the country. I felt the tension building, again, in my shoulders and in my head.

I went to see my plastic surgeon for the third time in three days, and for the third time in three days, I was forced to reschedule my appointment. Yes, really. I had an appointment for Monday, the 2nd. I had a confirmation call about the appointment. I went to his office on Monday. Office closed for the holidays. So, I started thinking I’d put it in my phone for the wrong day. Stupid me. Yesterday, I went to his office at the same time I’d gone on Monday after arranging for someone to take part of my 2nd period class. I got to the office, and the receptionist told me I didn’t have an appointment scheduled. I told her about Monday. She looked at the schedule, and gee, I was scheduled for an appointment on Monday…when they were closed. Their fault. We’re sorry. She rescheduled it for today at the same time. So, I arranged for someone to watch my 2nd period again and went. I sat in an exam room, in a gown, for 45 minutes. I listened to my doctor go into all the rooms around me. My appointment was at 10:05. At 10:55, I dressed and walked out of the exam room in tears. His medical assistant looked startled. I told her I couldn’t wait anymore because I had committed to covering part of another teacher’s class starting at 11:15. She told me she could have him in to see me in five minutes. Five minutes is not enough time for me to discuss what to do about the fat necrosis that still freaks me out. Five minutes is not enough time for me to discuss what to do about the fact the right foob is a full cup size bigger than the left. Five minutes is not enough time with my doctor. Five minutes is all I would have before I truly had to leave if he actually made it in my room within five minutes. She apologized and sent me to be rescheduled.

are_you_kidding_me_rage_face_meme_

I was so angry, I was in tears. The scheduler rescheduled me. Again. For the third time in three days. The new appointment is two weeks out.

I’m an angry crier. I cried as soon as I got into my car. I yelled at the Staples delivery driver who had almost blocked my car in when he made an annoyed face as I tried to back my car out of the space. I called A and cried. I got back into my empty classroom and told a coworker what had happened. She told me to text her the next time something like that happens and she would figure out how to help me. She told me my health and my family matter more, no matter how much I love my school. After she left, I put my head down on my desk for the two minutes I had between talking to her and covering the other class. I spent two minutes with my eyes closed trying to calm myself. Then, I went and covered. I won’t say no to covering someone, not after all the covering that was done for me last year so I could go to a doctor’s appointment or go to chemo or go do a burn treatment thanks to radiation. My principal covered my duty for me at times last year so I could go in the clinic and do a burn treatment, so no, I’m not going to say no to someone who needs help here at work if I can help. Sometimes, I believe strongly in the idea of paying it forward. Covering classes is how I pay forward what people did for me last year.

After I covered the part of her class she needed me to cover, I went out to my car. It’s cold here in Dallas. Arctic front and a chance of snow. Yaaaaaassssss. I love the cold, and I love watching my children experience snow. I hope it actually snows. My luck, though, it won’t simply because I want it to snow (“That’s not how weather works, L!” you might say, but it seems like that’s how my luck works). I wanted to be out in the cold, to enjoy it, to just be for a few minutes. And, stupidly, I got on social media. And, I saw more of the political circus revolving around the ACA. I went to my Rep’s website and found a link called “Your Obamacare Story,” and stupidly thought it was a good thing. Then, I saw how it only wanted negative stories. It was the straw that broke the camel’s back for me, and for the second time in less than I month, I found myself on the phone with an elected official’s office relating to the intern who answered the phone my story.

Not all Obamacare stories are negative, and <Congressional Official> needs to know there are stories like mine where the ACA made sure I had a chance to survive. It’s not perfect. It can be made better, and yes, my insurance premiums have gone up, and my out of pocket expenses have gone up, but you know what? I don’t blame Obamacare. I blame the insurance companies. I blame the drug companies. I blame them because they’re finally required to do their jobs. Let me tell you my story and why I happily pay for my insurance. I’m grateful to still have it.

I’ve worked since I graduated from college in the same job. I’ve paid my own health insurance for seventeen years. I never thought I would need it for anything except if I had kids. I never thought breast cancer would happen to me and certainly, not at 37. Yet, at 37, with no family history and no reason from genetic testing, there I was…with breast cancer. My treatments cost well over one hundred thousand dollars, but I could have them because my insurance company couldn’t drop me, couldn’t enforce annual limits, couldn’t enforce lifetime maximum limits. I’m alive because of my oncologist, who I could see because of my health insurance. I don’t rely on the ACA for coverage. I rely on the ACA for protection. The ASCO publishes a report about cancer care in America, and it talks about how the ACA has helped those of with cancer because of the reasons I listed.

I am a wife. I am a mother. I have two children. I love my husband and my children very much. I want to be able to live as long as I can to maybe see my 11 year old daughter and 8 year old son grow up.

I’m a teacher. I work hard everyday to give back to my community, the community I was raised in, that my parents were raised in, that I raise my children in, because it’s important to me I do something to contribute to my community. My story is not unique, but I’m tired of feeling voiceless, of feeling powerless. You need to know there are people, many people, like me, who without the ACA will find ourselves in danger of losing our HEALTH insurance because we got sick and needed our HEALTH insurance, which is the point of HEALTH insurance. So, please, make sure <Congressional Official> knows there are stories like mine. My story matters. My life matters. My voice matters, and I’m tired of not having a voice.

The intern listened, asked questions, made comments that made me feel like he was actually listening. Then, he asked my name and for my contact information. He told me he would see to it my information and the notes he took were passed along to my representative. Maybe he will. Maybe he won’t. But, I’m not going to stop calling my elected officials. You cannot leave those of us with catastrophic illnesses with no safety net. Well, you can, and the GOP is trying, but the question is one of mortality and community, and if you stand on a conservative platform and claim it’s moral to take away access to healthcare from millions, I have to question your sincerity. That’s why I questioned, and still question, my friends and family who voted for Trump, why they voted against my life. How can you say you love me or care about me knowing the outcome would be what I see on social media every day now? One of my family members told me he really didn’t think this would happen. I had to turn and walk away.

Maybe I’m not going about this in the way I should, but my blog and my phone are the only ways I can get my voice heard. I want my elected officials to know there are many, many people like me. I want my elected officials to know taking away access to healthcare for millions with no true plan to replace the ACA is wrong. I want my elected officials to know I exist. I have a voice.

I don’t want to worry every single day that if today is the day my cancer comes back, today could also be the day my insurance company tells me, “Bye Felecia!” and sends me a letter with some bogus reason the company has come up with to drop me from coverage because cancer. I don’t want to worry every single day that if today is the day my cancer comes back, today could be the day my doctor tells me I can’t have a treatment or a surgery because insurance won’t cover it.

I know people who think my life is expendable because I developed cancer. I know people who think it’s my fault I developed cancer. So, I know why people think it’s okay for the GOP to do what they’re proposing.

Since 2017 began, these have been the prevailing thoughts circling in my mind, that keep me up at night (besides the cats), that scare me to my core.

It’s been a long, frustrating day.

breast cancer, life, Uncategorized

What’s on your mind?

When you post a status, Facebook’s text says, “What’s on your mind?” So, here’s what’s on my mind-I don’t like myself a whole lot right now, and I don’t like a lot of things right now.

I woke up on New Year’s Day and was hit on social media by all the posts of plans for repealing the ACA and Trump’s ridiculous New Year’s Day Tweet. I slept terribly, and sadly, that’s true for me for pretty much my entire winter vacation.

See, here’s my problem-I don’t feel hopeful about 2017, not when politically, the party of life is ripping away healthcare from upwards of 20 million people, when my own health insurance protections are now at risk. I’m powerless, just like I was when I found out I had breast cancer, like I’ll be if the cancer comes back. I’m powerless. I don’t want to be powerless, but I am. I can’t stop any of this political mess. I can’t stop my cancer from coming back if it decides to come back. I. Can’t. I can’t get my voice to matter.

And, in the TMI department, I’m not happy with my reconstruction anymore. Everything has settled into place. One foob (fake boob made from a flap for those who can’t figure out the portmanteau) is a full cup size bigger than the other. It also dropped down more than the other. So, it’s pretty lopsided, and I don’t like it. I know I need to talk to my plastic surgeon about it, and, I will at my appointment tomorrow after two rescheduled appointments with him. I don’t like the fat necrosis that’s visible on the foob that’s larger. I don’t like any of it right now.

I hate this. I hate all of this. I wish I’d come out of this cancer crap a better person, a happier, stronger, more gracious and more content person, but I didn’t. Just one more failing of mine, I guess.

So, what’s on my mind? I’m powerless. I’m insignificant. I hate cancer and what it’s done to me. That’s what’s on my mind.