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

Sliding

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Found on Pinterest. No infringement intended.

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

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

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

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

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

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

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

I’ll rise. I’ll persist.

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

But, I’ll still rise.

 

breast cancer, family, kids, life, Uncategorized

Confessions of a Cell Phone Hater

I hate my cell phone.

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

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

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

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

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

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

breast cancer, life, Uncategorized

Is it confidence or arrogance?

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

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

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

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

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

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

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

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

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

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

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

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

breast cancer, life, Uncategorized

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

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

Lazy. Sloth. Selfish.

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

Then, I went right back to bed.

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

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

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

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

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

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

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And, sometimes, that’s okay.

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, family, life, Uncategorized

Medical Waste

My ovaries and Fallopian tubes joined my breasts this morning as medical waste.

That’s a fun sentence to write.

Not.

Surgery started at 7:45. I was in the recovery room by 9:10. I was home by 10:50. For once, I woke up from anesthesia without nausea. Dr. He told me everything looked good, no visual oddities, and he’ll see me in two weeks. Hopefully, he’s right. Everything is sent to pathology no matter what. I’ll call Dr. O tomorrow to let her office know the surgery is done and see what the next treatment step is. It should be cancelling the Lupron shot in April. It might be switching to Armidex from Tamoxifen immediately. I really don’t know.

I’m on bedrest today and most of tomorrow. I guess that’s ok. It’ll give me time to read since I’m rereading the Harry Potter series, and it’ll give me time to play on Pinterest.

This is the one surgery I’ve been completely ambivalent about having, but today, when I had to sign two documents acknowledging I understood this procedure would result in total, irreversible infertility, I paused.

No, A and I were not going to have another child. Too dangerous even if I had any fertility left after chemo, but there was something about being forced to put in writing that door would close to never open again.

We once said we wanted three children, and if I hadn’t miscarried in 2004, we would have had three children. We’d have a 13 year old now along with 11 year old S and 8 year old AJ. I’m never really sad over the miscarriage because I know it wasn’t meant to be, but sometimes, there’s a what-if that floats through my mind.

Cancer took away that what-if. Cancer took away so many of my what-ifs.

My great-grandmothers all lived well into their nineties, one into her hundreds.

My mother and her sisters are in their sixties and seventies.

My sister is nearly fifty.

My older cousins are in their mid forties and fifties.

A turned 37 last Friday.

It seems to me I’m the one destined to live a short life…”the sharp knife of a short life.” No more what-ifs about living to old age.

Cancer reminds me daily how fragile life truly is, how mortal we truly are, even as we fight against mortality, against growing old. What a paradox. We want to grow old because that means we’ve lived a long life, yet if we live into advanced ages, we do anything we can to avoid being seen as that age. Anti-aging creams, vitamins, surgeries all because we’re seventy and want to look fifty and because we’re fifty, we want to look forty and because we’re forty and where did that line come from, how can I look like I’m twenty?

Last year, when I had my bilateral mastectomy, I struggled so hard when I woke up in recovery and found tissue expanders instead of reconstruction. Suddenly, I had absolute, inarguable, physical proof of cancer, more physical than the port. The mastectomy cut away the cancerous parts of my body. Two parts of my body became medical waste because the left one tried to kill me. Today, I lost four more organs that are uniquely female. Four more pieces of my 39 year old body became medical waste because my left breast tried to kill me. I’m numb to it right now (but not physically numb because this discomforting ache can go away).

As of today, with the exception of losing weight, I’ve now done everything I can do to keep the cancer at bay. I had six months of taxotere, carboplatin, herceptin, and perjeta. I had another six months of just herceptin as a year of herceptin is the gold standard for HER2+ cancer. I had a bilateral mastectomy. I had auxiliary lymph node dissection of the left nodes. I began tamoxifen when the mastectomy and ALND revealed ER+ cancer and will, hopefully, be on it or Armidex for 9 more years. I had radiation. I had a bilateral salpingo-oophorectomy.

Cancer is carnage. Cancer is waste. My fate is truly, deeply out of my hands at this point, not that it ever was in my hands in the first place.

We wait. We watch. We see. There’s nothing else to be done.

breast cancer, life, Uncategorized

Weighty

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

Tonight is one of those nights.

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

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

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

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

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

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

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

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

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

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

breast cancer, family, life, Uncategorized

On second thought…

I’m not getting the 3D tattoos tomorrow. I decided to cancel the appointment and made another one with a tattoo artist who I saw on an NBC5 news story who does regular tattoos and specializes in realistic 3D areola tattoos. I looked up her work and was hugely impressed. It’s going to cost a lot more than my plastic surgeon’s office, but I’d rather have someone doing this whose life work is tattooing and has a master’s degree in medical illustration.

It’s been a nutty few days. My dad ended up in Baylor Dallas over the weekend. He collapsed at home and had a seizure. My mom rushed him to the hospital where they discovered a 4 cm tumor on the right side of his brain. The good news is it has all the markings of a benign tumor. The bad news is he has a brain tumor. After a fairly fraught few hours, my parents decided to take the watch and see route. He has to take anti-seizure medicine three times a day, can’t drive, and has to see the neurologist for frequent follow ups.

The last three days have been crazy to the point of me just going, “What the hell is next?”

breast cancer, life, Uncategorized

More tattoos

Maybe.

My plastic surgeon has a tattoo artist on staff who does tattooing for his breast reconstruction patients, and my appointment is this coming Wednesday. Dr. L’s assistant set it up for me almost two months ago, and I completely, 100% forgot until yesterday when the tattoo artist called to ask me some questions about my scars.

Dr. L talked me into basic tattooing and nipple reconstruction when I saw him in January. I came home and brooded for awhile over it because he recommended nipple reconstruction as well as a fat transfer to suck out the fat necrosis and replace it with fat from my hips, and he recommended lifting the right foob to match the left.

At the time, my reaction was, “Yeah…ok…whatever.”

Then, I actually thought about everything, and man…I don’t want to do it. I don’t care about nipple reconstruction. I’m reconciled to the shape and location of the foobs. My scars have thinned and lightened. I don’t want more surgery on this. So, I talked to A, and by talked, I mean I was a crying mess of frustration, and his response was typical, amazing, A, “If you’re having these surgeries for yourself, do them. If you’re having them for me or because you think you have to, stop. You’re alive. That’s all I care about. I do not care what is or is not on your chest. You are, and always have been and will be, more than what you’ve lost.” Yes, he really is amazing. Yes, I know how insanely blessed I am to have him. He’s mine…until death we part.

So, when the tattoo artist called to talk to me about pigmentation in preparation for nipple reconstruction, I blurted out I don’t want that, and I want 3D tattoos and if that was a problem, I’d find somewhere to have it done because I’m not having more surgeries unless I have to do so. The artist just breezed on and said that was fine, she does 3D, and she’d update my record and for me to plan to be with her for awhile on Wednesday afternoon.

I’ve agonized over this for weeks. It felt good to make a decision based on my wants. Now, I just hope the tattoos look ok because I’ve gotten used to the circular scars. If they’re replaced with something that doesn’t look good, I’m going to flip my lid.