breast cancer, family, life, Uncategorized

Cancer is why

The integrated medicine specialist I saw yesterday who told me I’m pretty much doing everything wrong and compromising my chances of living without a occurrence also told me that they were impressed with how calmly and unemotionally I can recite my history from the past three years. I was also told the fact I can be so unemotional about it is not a good thing, and in fact, it comes off as

uncaring.

Stoic.

Arrogant.

Here’s the reason people like me wear a mask every day: We’re tired of being hurt. We’re tired of wondering when the next shoe is going to drop. We’re tired of not knowing what to expect. We’re tired of thinking we’re doing the right thing, but as usual, it’s the wrong thing, or it’s the right thing, but it’s not right enough.

Do you honestly think I don’t feel horrible that my diet sucks so much? Do you honestly think I don’t feel like I’ve damned myself? Do you honestly think I don’t feel like I’m ruining my family’s lives because my body betrayed me at thirty seven years old? Do you honestly think I enjoy thinking EVERY SINGLE DAY that EVERY SINGLE ACHE or PAIN or FUNNY FEELING is the cancer? Do you HONESTLY think that?

And, do you honestly think I’m the one in the wrong for wearing a mask to protect myself? For guarding my heart? Do you honestly think A is wrong for it? Honestly? With everything we’ve been through the last several years, life reads like a damned Shakespearean tragedy.

December 2, 2013: Mom diagnosed with colon cancer.

December 26, 2013: Mom hospitalized for a life threatening obstruction and infection resulting in emergency surgery and a two week hospital stay.

January 2014-May 2014: Mom unable to work for months because of complications to colon cancer treatment and surgeries.

June 2014-August 2014: Mom recovers and continues chemo.

September 2014-May 2015: Mom has more surgeries from colon cancer and treatments. Mom has every side effect or complication possible, including resulting in a wound vac.

July 2015: I decided to follow my heart back into teaching. A accepted a new, very challenging position. Both of us excited at the possibilities.

August 2015: Breast cancer. Stage 2A. IDC. HER2+.

September 2015-January 2016: TCHP chemo regimen. Private family emergency occurs. I completely and earn my master’s degree while undergoing chemo.

February 2016: Mastectomy. SURPRISE! The cancer is in your lymph nodes AND it’s ER+.  No HER2 cancer left behind.

February 2016: Started Tamoxifen. Continued Herceptin.

March 2016: Worst headache I’ve ever had triggers a brain CT. Began radiation. Still Herceptin’ ing. Brain CT normal -Thank all the things.

April 2016: Finished radiation. Still Herceptin’ ing.

May 2016-June 2016: Recovered from radiation while getting Herceptin every three weeks.

July 2016: DIEP flap reconstruction. Still Herceptin ‘ing.

August 2016: Returned to work less than three weeks after DIEP. Still Herceptin ‘ing.

September 2016: Last Herceptin. 1 year scans. NED.

October 2016: Complications from DIEP reconstruction.

November 2016: Dad starts complaining of headaches. Move into new house.

December 2016: Settle into new house.

January 2016-February 2017: Dad complains of headaches.

March 2017: Dad has a seizure. I have an oophorectomy on A’s birthday.

April 2017-June 2017 Dad’s health deteriorates. He has a brain tumor. Looks benign. Still has seizures.

July 2017: Roadtrip for me and the kids. A accepts a new position and changes jobs.

August 2017: Dad has brain surgery resulting in loss of function on left side and begins intensive rehab.

September 2017: 2 year scans. NED. Dad moved to skilled nursing.

October 2017: Dad moved home with in house therapy. Requires 24/7 care.

November 2017: Headaches for me scaring me to death. A develops bronchitis. No improvement in Dad.

In this same stretch of time, A’s uncle died, his mom had surgery, his dad lost his job and found a new one, his brother broke up with his fiancee, his sister graduated from college, his grandparents have had health scares, particularly his 90 year old grandfather who lives over a thousand miles away from us.

It does not remotely touch family stress, daily stress, or anything specific to jobs. This does not remotely touch the stress of living with someone who’s had cancer. Caretakers endure enormous stress. If you think for one minute my cancer and fears don’t touch A, you’re wrong. He’s like me -stoic. What else can we be? We have two young children. Cancer yanked our best laid plans for our lives out from under us. And, because he guards his heart as zealously as I guard mine, we’re wrong.

When I was little, around 10 years old, a family member, in anger, told me something I’ve never forgotten or forgiven myself for: I don’t know when to shut up and because I don’t, I make things so much worse for everyone around me. Imagine how it feels now because I’ve had cancer. Imagine the guilt I feel every…single…day.

I cry every single day. EVERY day. I cry because I’m scared these headaches mean brain mets. I cry because I blame myself anytime A has a bad day. I cry because I fear what will happen to my children if they watch me die from cancer. I cry because I had cancer.

It is what it is.

I don’t know how to be any different than who I am. I don’t ask A to be any different than he is. Cancer changed us. I’m sorry my cancer changed me and changed him. But, it did. I can’t fix it. I can’t fix cancer. I. Can’t. Fix. It.

I’ve spent the last four years constantly trying to put out fires that just get bigger, get worse, get scarier, and I’ve done it all with the facade of “This is fine. Everything is fine.”

Last night, a friend sent me this picture message:

rough days
Found by a friend on Pinterest. No infringement intended.

My track record is 100%. Yesterday sucked. There’s no kinder, nicer, cleaner way of saying it. It just sucked. Today, honestly, isn’t that great either because I have a nagging heaviness in my head around my left temple, and it’s scaring me. I didn’t wake up with it, I’m not nauseous or dizzy or seeing spots. It’s not progressive. It’s none of the things I’ve Googled when I Google “what do breast cancer brain mets feel like?” Here’s the rub: I have to Google that because…I had a cancer. I had cancer. At thirty seven. I. Had. Cancer. And, as I was told yesterday, if I don’t start eating better and exercising and losing weight and ALL the things I’ve been told since I was diagnosed, I’m upping my risk of dying from breast cancer.

You wonder why I wear a mask? Why I guard my heart? Why A is stoic?

Cancer is why.

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breast cancer, life

Years

A year ago, I had my port removed. It served its purpose.

A year ago, we started getting ready to move, again, because our dream house was a month from being completed.

My husband’s motto for us is the cliche “You only live once” because the two of us know the fragility of life. It changes in an instant. So, a year ago, we started doing the things we’d been putting off -selling our house, pursuing career options, planning family trips. We are a lot less focused on the intangible.

A little over two years ago, I made the decision to return to the classroom as a teacher. I’ve never looked back, never questioned the decision, and I’m happier for it. This year, A made the decision to find a new job closer to home, scrapping his hour to an hour and a half commute. He found a position which challenges and fulfills him as much as his other job did.

We keep making changes, some big, like career changes, and some little. We’ve lived in the shadow of cancer and reoccurrence for two years now. So far, it’s no easier. Reminders from On This Day catch me off guard. Answering innocent questions about my port scar on my neck make me cringe. Today, AJ asked me about it. He’s forgotten about my port and those surgeries. Those were little surgeries to him. I was home within hours of those.

Oncologists talk about survival rates in years, in appointments in years. As a HER2+ cancer recoverer, I don’t get to go to six months and once a years until I’ve been no evidence of disease for seven years, or that’s Dr. O’s standard. I graduated to twenty week check ups with her, was yanked back to twelve week check up because of Arimidex, and am now to sixteen weeks because of my anxiety at my last appointment. I might return to twenty week check ups, but not until next summer. If I make it to three years with no evidence of disease, I’ll still be on twenty week check ups. Same for four years. At five years, Dr. O said she would go to six month check ups. Same for six years and seven. If I make it through year seven with no evidence of disease, I graduate to one year check ups…for the rest of my life.

Cancer is a never ending marathon.

Maybe one day, my picture quote will ring completely true for me. It’s not right now.

I’m not strong and full of fire.

My passion does burn, though, but not brighter than my fears.

Maybe one year, it will, though.

breast cancer, family, life, Uncategorized

Undecided

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Found on Pinterest and directed here. No infringement intended.

My phone rang at 2:20 this afternoon. The screen said Texas Oncology. Today is Tuesday. Today is the day Dr. O would call if something showed up on the scan.

I didn’t like seeing that caller ID on my phone. My heart raced, but I knew it could also be Dr. O’s nurse with referral or medication information. For a split second, I thought of sending the call to voicemail. But, I didn’t. I answered the phone as I walked out of my classroom.

The call was to update me about the referral (it’s in progress). After the nurse finished giving me the update, I told her my first thought was this call had something to do with the scan since today is Tuesday. She went quiet for a minute before saying, “Nope…scan looks good. Nothing on it. We’ll rescan in a year.”

I thanked her, ended the call, and bent over, hands to knees just to breathe for a minute or two. I might have stayed that way longer if not for a junior who saw me in the hall and asked me if I was ok. I plastered on my smile, told her everything was fine, and I went back to my classroom.

I posted my news on Twitter.

I planned my lessons for the next grading cycle.

I came home.

The kids came home.

S did homework.

AJ went to a friend’s house for a bit and then went to karate.

S and I window shopped for Halloween.

I picked up AJ.

We came home.

S drew and watched TV.

AJ showered.

The kids said their good nights.

The house grew quiet.

The daily routine of family life, of my life, a daily routine I cherish even when it makes me crazed, a daily routine I would not have without Dr. O and the American Cancer Society (Herceptin).

I have a choice, the same choice I’ve had for over two years: be ruled by my fear or rule my fear.

I’m not sure what’s going to happen. I know, at this moment, I’m profoundly grateful to be stable with no detectable amount of active cancer in my body. I know that could change at any time, or I may remain no evidence of disease for the rest of my life.

I’m not ready to commit to saying I’m done being afraid. I’ve had cancer. One of my nightmares came true. I’m not sure I’ll ever be done being afraid of it. What I can commit to is finding a better way to cope. I deserve that.

No grandiose promises, no unsustainable commitments.

I’ve had cancer.

But, for the moment, I don’t.

Now, I have to learn to cope.

After all, I’ve had cancer.

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, family, life, Uncategorized

My Spoons Are Running Low

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I’ve never been good at saying no. I’ve never been good at asking for help. I’ve never been good at admitting I’m overwhelmed. I’ve never been good at putting my needs ahead of those I love.

But, I’m running out of spoons.

My dad is not doing as well as we hoped after having surgery almost six weeks ago. He has little to no movement on his left side. He’s wheelchair or bed bound at the rehab hospital. He does hours of physical therapy. He’s remarkably better than he was a few weeks ago, but he’s nowhere near how he was this time last year. I’m worried sick about how my mom will handle him at home in a house that is in no way wheelchair accessible.

My sister is back in the picture. I didn’t survive cancer to be scared of her anymore. I’ve vacillated between being livid and being bitter. Eventually, I’ll hit apathy again with this situation just as I have before.

My mom is one of the strongest women I know. The last five years have been nothing but battle after battle and burden after burden for her. The weight she carries everyday would crush me, squash me, pancake me. She wakes up every morning, settles the weight on her shoulders, and marches on. I’m worried sick about her.

My school year started out at 100 mph and hasn’t slowed. I like the fast pace. I like a sense of urgency. I like what I do. I like my classes. I like a new challenge everyday.

But, I’m running out of spoons.

Cancer took one of my colleagues on Monday, a teacher who’s taught at the school since I was a student there, a seemingly healthy, ate well, exercised, did all the right things, woman, a mother, a daughter. I froze up when the email came with the news of her death. I avoided Facebook all day.

The grim reality of cancer is death, and I’m running out of spoons and couldn’t face the reality of cancer on Monday.

I’m really running very low on spoons.

I see Dr. O in a week and a half for my next check up. I’ve gained some weight, I’m not sleeping, I’m falling back into old habits. It’s a self-defeating cycle, yet here I am. I’m in a constant state of low anxiety, and as my appointment day creeps closer, my anxiety builds. It spikes when someone asks me how A is enjoying his new job (a lot), when someone asks me how my dad is doing (it’s day by day), when someone asks me how I’m doing (we don’t have that kind of time). If Dr. O we’re to measure my spoon count, I’m not sure she’d find many.

My spoons are low, so are my spirit and energy. I’m tired, in all sense of the word. I need more spoons. They’re hard to recover, slow to come back.

I need my spoons.

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

Deleting and Clearing

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This afternoon, a coworker stopped in my room to ask me a question. I responded and went back to what I was working on, and as my coworker reached the door of my classroom, she stopped and said, “Don’t let the beginning of the year stress you out too much.”

I laughed, a short, sardonic laugh.

I’m not stressed out about school starting.

I’m stressed out because my dad had serious brain surgery two weeks ago to remove a benign brain tumor and needs intensive rehab for cognitive and physical impairments due to the tumor. He’s been in the rehab hospital part of Baylor Dallas for a week. He’ll be there for awhile. Then, he needs to be in a skilled nursing facility. Then…I don’t know. I really don’t. My mom and I are going day-by-day. There’s nothing else we can do.

I’m stressed out because this week has too damned many cancerversaries.

Yesterday, towards the end of the day, I sat at my computer to do some serious email purging. I’m an email hoarder at work. I had close to five thousand emails in my inbox…some read, many unread because they were ads from teaching companies or job postings or emails coworkers sent on top of text messages saying the same thing. Some I read on my iPad, but my desktop email program didn’t recognize those emails were read. As I began my deleting and organizing spree, I came across many emails from friends and coworkers dated days after my diagnosis. Each one was another smoldering reminder of the day almost two years ago that changed my life forever.

I left those emails in my inbox. Some of them are still too hard to read. “You’ll beat this. You’re strong. You got this.”

What if I don’t? Am I a weak loser, then?

I deleted or stored all but 42 emails. The best feeling was deleting an entire year’s worth of emails from several years ago (I’m a terrible email hoarder!) without looking at them. I knew there was nothing from that year I wanted or needed to keep, so I highlighted them all and hit delete. Truly, it felt satisfying, watch one year’s worth of emails disappear, a singularly unsatisfying year of emails. Deleting them felt as though I cleared away some regrets.

It was a great feeling.

This Sunday marks two years since I heard the words, “You have breast cancer.” I’m grateful I listened to my gut two years ago. It screamed at me to do two things: Go back into the classroom as a teacher and do it because it’s what you’re meant to do -you were put in this world to teach, and go see Dr. B because it’s not normal for your left nipple to invert only when you raise your arm -it could be related to that weird place you can feel. (Spoiler alert: It was. Sudden nipple inversion is a sign of breast cancer.)

I went back into a classroom two years ago this Friday, and I have no regrets. I’m happy. I’m fulfilled. I make a difference. I work with awesome people. I love what I do and where I do it.

I saw Dr. B for that weird place two years ago last Friday. Maybe that’s the day I found out I had cancer. I knew it, deep down. I just wanted to be wrong, for her to say it was nothing. I didn’t want her to look at me with deep concern and tell me that most lumps were nothing but she wanted me to get this one checked out as soon as possible.

Tomorrow, I’ll wake up early and go to another high school in my district to give several presentations to other high school English teachers. Tomorrow, I’ll come home for lunch and spend some time with my babies. Tomorrow, I’ll think about breast cancer at some point. I think about it, at some point, every single day. But, tomorrow, I’ll also be grateful -I’m alive to think about it, I’m alive to spend time with S and AJ, I’m alive to give presentations to my peers, I’m alive to delete emails.

I’m alive to help my mom with my dad.

For those thing, I am grateful. For right now, it’s enough.

breast cancer, life, teaching, Uncategorized

Leading for a Legacy

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Today was the first official day back for teachers in my school district even though most of us have been back for some time.

My campus is still under fairly heavy construction. Some of the hallways and classroom are off limits. Thankfully, our students don’t start the 2017-2018 school year for another week and a half. By then, the construction in the classroom wings should be completed. *crosses fingers, throws salt over shoulder* The hallway my classroom is in is mostly finished, so I spent several hours yesterday and today arranging and rearranging.

We had a long, but really good, morning meeting with our new head principal. The principal who hired me took an offer to open a new campus within our district, and truthfully, I worried about who would replace her because my campus has a wonderful your family first, your health first “rule,” and the campus has a (mostly) positive culture. We really do care for everyone on our campus. I shouldn’t have worried, though. Our new principal is exactly what we need. He killed in our opening faculty meeting. I’m so excited about this school year and the goals he set for us and the campus.

Something he talked about in our opening meeting was the idea of legacy. What legacy do we leave at our campus? With our students? Their families? The community? What do we want our legacy to be as teachers?

I met with our new principal a couple of weeks ago just to introduce myself and to talk about the vision for our AP program since we are an AP Capstone campus, and as soon as I introduced myself and sat down, he leaned forward towards me and said, “I hear from everyone you are the real deal when it comes to teaching, like the real deal.” I laughed and thanked him, but when I left, I wondered, what does that mean?

Today, I got an idea of what he meant as he described what his idea of legacy is as educators, and I thought about the seventeen years I’ve spent in education and my legacy.

I’m proud to be a public school teacher. I’m a proud public school graduate. I’m a proud public state university graduate -I received my Bachelor of Arts in English and my Master of Educational Leadership from the same public state university. I received an excellent education through the public school system, and I believe I’ve provided thousands of students with an excellent year (or two) of reading and writing instruction through my English classes.

After the meeting, I went back to my classroom to finish going through a filing cabinet. In the first drawer were all the notes I’ve saved from students and their parents and my administrators. I stopped and read each of them. Some are fifteen and sixteen years old. Some are two months old.

As a teacher, the legacy I hope to leave behind is that of a teacher who challenged her students to do what they thought they couldn’t, a teacher who cared deeply about the students she encountered, a teacher who demanded her students respect themselves so they understood why it’s important to respect others, even when the last thing you want to do is be respectful, and of a teacher who helped her students realize they are writers, content creators, who write and create constantly living, little vignettes, of their lives with every sentence, paragraph, paper, text message, blog post, Tweet, Snap, photograph, and video.

But most importantly, I hope my legacy is of a teacher who tried every day to be the kind of teacher to my students that I want for my own children.

The teenagers who sit in my room are someone’s baby, someone’s whole world, just like my S and my AJ. Ultimately, S and AJ are my legacy to this world, but so are the students I teach. I want my legacy for my students to be that of “the real deal,” whatever that means to them.

I don’t know how long I have left on this Earth. I understand the limits of a human life. I’ve stared Death in the face. It came with the words, “You have breast cancer. Find an oncologist immediately.” Death stared back at me with the words, “It’s aggressive, but we can treat it.” I stared Death in the face with every drip of chemo, of Herceptin, of Perjeta into my veins, with every single hellish session of radiation, and in the recovery room after my bilateral mastectomy and after my oophorectomy.

Our nature is to fight death, to fear it, for death is the end if our physical existence on this mortal coil -but it is not our complete end. Our true end is dying without a legacy, whatever that legacy may be -memories, achievements, children, families, journals, pictures, stories.

My new head principal challenged all of us to lead our classrooms with legacy in mind.

Lead looking forward to a legacy. Live knowing you create a legacy.

That’s what lives forever, long after we return to dust.

That’s our forever existence.

 

 

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

It’s a Mystery

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I’ve always liked that line from Shakespeare in Love, “I don’t know…it’s a mystery.”

Henslowe: Mr. Fennyman, allow me to explain about the theatre business. The natural condition is one of insurmountable obstacles on the road to imminent disaster.
Fennyman: So what do we do?
Henslowe: Nothing. Strangely enough, it all turns out well.
Fennyman: How?
Henslowe: I don’t know. It’s a mystery.

Henslowe could be describing life instead of “the theater business,” as he puts it.

That line, “I don’t know…it’s a mystery,” is one of A’s favorites as well. He believes things work out the way they’re supposed to, and in my moments of fear and frustration, he plays Henslowe to my Fennyman.

This morning was one of those his Henslowe to my Fennyman moments.

I leave with S and AJ tomorrow on our road trip vacation. I panicked this morning over it. Until this morning, it’s been months since I had a true, full on, panic attack, but this morning? Bam! Tears falling, teeth chattering, breath speeding. I felt like I had so much to do. I didn’t know where to start. I’m nervous about being on the road alone with the kids. I’m worried they’re going to be bored and hate the trip I’ve planned. It all just crept up on me. Out of nowhere.

I’m grateful A knows what to do, what to say. Never once did he say, “Calm down!” Instead, it was, “Take a deep breath. Now another one.” Never once did he say, “Stop it! You’re fine!” Instead, it was, “You’ve planned this trip out as much as you can. Would you like for me to go through and put in some other places to for you to stop along the way?” Never once did he say, “If you feel like you’ve got too much to do, just start somewhere.” Instead, it was, “You go to the store with S for snacks to keep in the car. I will take AJ and have your car cleaned. You and S go to the bookstore and get something for you to read on the beach or at stops and something for the kids to read in the car. I will look at what you’ve organized and double check everything is here.”

Fennyman: So what do we do?
Henslowe: Nothing. Strangely enough, it all turns out well.
Fennyman: How?
Henslowe: I don’t know. It’s a mystery.

By 8:00 pm tonight, suitcases were packed, snacks were sorted, don’t-be-bored bag for the kids was stuffed, and all was loaded into the back of my car. We leave in 10 hours. I wish A could come with us, but I know he’s looking forward to starting his new job…and having time alone to decompress with the world conquerer computer game he plays and whatever show he’s binge-watching on Netflix.

One of the things I told A this morning, in the throes of running tears and chattering teeth, was that I’m afraid this is the last vacation I’ll ever take the kids on because of cancer. Thank you, scumbag brain, for that gloriously horrible thought. 

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Found on quickmeme…no infringement intended

 Instead of getting angry, A said, “First of all, no. You don’t get to fixate on something like that. Tell your brain to STFU. Second of all, let’s say, because you like to play what if, let’s say it is. What an amazing amount of memories you all are going to make driving and being silly, singing songs, and watching the scenery pass by, as you all carriage or trolley ride through New Orleans, play on the beach in Destin, and hike in the Smoky Mountains. You think those aren’t memories of a lifetime? Tell me that some of your best memories aren’t of the road trips you went on as a kid with your grandparents, and I’ll call you a liar. I know the stories. I’ve heard them from you. Your grandfather dying of lung cancer and your grandmother dying of melanoma didn’t do anything to those memories.”

Found on GIPHY, and since A is from NYC, a Yankee hitting a homerun seems apropos.

I’m still nervous, but A is right. Things work out. It’s a mystery. We’ll get up in 10 hours, and we’ll begin the first leg of our trip. It’s going to be fun, an adventure.

I hope.

 

breast cancer, family, kids, life, Uncategorized

Time

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We know the saying, no one is promised tomorrow, and for those who survive a life threatening event, we know, deeply, truly know, the certainty of that saying. No one is promised tomorrow.

Knowing doesn’t stop planning and hoping, though.

When I was diagnosed, A and I made a promise to each other once we knew I would need the full cancer cocktail of chemo and surgery with the possibility of radiation and a full year of targeted therapy. We promised ourselves a vacation with our children once treatment and surgeries were done. We promised we would take them to the beach and let the sand, the water, the experience heal us…heal me. So, we planned it for mid-July, this July. Of course, the best laid plans have a tendency to blow up, and ours are no exception.

A starts a new job next week, the week of our vacation. He loves where he worked and the job he did, but his commute took an hour to an hour and a half, each way; his new job is less than thirty minutes from our house. His new job is one he’s excited for, and it is a great opportunity for him. He’s so passionate about his field and the impact it has. He’s excited to begin his new job even though his first day is the second day of our vacation. We knew, when he accepted the offer, it meant our vacation might be postponed. That’s fine. That’s life. But A, being A, wants us, me and the kids, to go. So, we’re going. Me, S, and AJ. It also means we can spend a little more time on our road trip to the beach.

My grandparents, my mother’s parents, owned an RV, and every summer, until my grandfather was too sick from lung cancer, he and my grandmother took me, my sister, and our two cousins on a road trip. I saw a lot of the southern and midwestern states thanks to them. Some of my most cherished memories of my grandfather, my Papa, come from those road trips -eating pie at 2 in the morning with him at a truck stop in Oklahoma while everyone else in the RV slept; staying at a campground in Missouri with a fishing pond and catching our dinner; pulling my first loose tooth after coming home from a long, looping trip.

We don’t own an RV. I’m not setting out to go wherever the open road leads, but I am going to take my children on a road trip and take them to see parts of the country they’ve never seen. I’ve added a stop in New Orleans for us. I’ve never been there, they’ve never been there, we have the time, so why not stop and sightsee, eat beignets, and ride the streetcars? From there, we head to Destin for a few days of beaching, snorkeling, and lazing. Then, there’s coming home.

One of my most favorite places is the Great Smoky Mountains. I think I’m going to take a Papa sized detour coming home and take S and AJ to spend a day or two in Gaitlinburg so they can see the majesty of the mountains.

When I was diagnosed, one of my biggest fears was that S and AJ would remember me only as sick, that cancer would taint and wreck their lives, and yes, my children have dealt with stuff kids shouldn’t deal with -worrying their mother is going to die -but it hasn’t wrecked them. We don’t allow my cancer to shadow over them, and ultimately, that’s why we’re taking this road trip, why A insisted I go with the kids. It’s a chance to make deep, lasting memories, to be free from the shadow of cancer, to rest.

To have the time to heal, even if it’s only a little bit.

It’s time, precious time together.