Wednesday, April 26, 2017

The Applicable Expletive

It’s been a very long time since I’ve written in this blog. In a way, I suppose I’ve been avoiding it. Not because I no longer want to share this journey with you (Blech, I hate that word – “journey.” It sounds like a kitschy vacation. You "journey" to Orlando to hop aboard Space Mountain, you are dragged kicking and screaming into cancer treatment!), but because we have reached the point in the program where how I feel about how I feel is not so black and white anymore. Not so easily identifiable.

I feel good. Decent, at least. I am back at work full time. I am grocery shopping again (my happy place). I haven’t napped in weeks. My energy level is back to my pre-cancer days. My kids no longer tiptoe around me. Ruanita has stopped staring at me all weepy-eyed and sad. I’m me again.

Except when I’m not.

It’s hard to explain. In many ways, I feel a sort of weird kinship with soldiers coming home from war. Not in a strong, brave, honorable sense – I readily admit to being a weak scaredy-cat with questionable morals – but perhaps in a broken sense. I imagine we might be somewhat broken in the same ways. I imagine returning soldiers struggle with coming home to unchanged circumstances as a changed person. And that’s how I feel. In many ways, completing my treatment has been a sort of homecoming. I am stepping back into my life after a year-long absence. But it doesn’t feel like my life anymore. The circumstances are regaining a sense of normalcy (somewhat), but I am not the same person I was a year ago.  I don’t react to things in the same way.

I am entirely too much inside my own head, which is a crazy place to be.  

I want to be the same person I was before. I want to get excited about the same things. But my brain is waging a rebellion that is, frankly, quite annoying. My brain is completely disrespecting me these days. Giving me lip. (Yes, my brain has a lip. It also has a finger that it wags in front of my face and a mouth like a redneck sailor. And a voice like a howler monkey.)

I say, “Look! A 50-cent off coupon for butter!” (These are the things that used to excite my pre-cancer self). My brain replies, “Bitch, you could have died! Buy all the fucking butter, asshole!”

I say, “I need to get up. I have so much to do at work today.” My brain replies, “Bitch, you could have died! You deserve to sleep in!”

I say, “My children need my undivided attention.” My brain replies, “Bitch, you could have died! What about what YOU need??”

I say, “I need to watch what I eat. I need to be more active. Exercise would be good for my mental health.” My brain replies, “Bitch, you could have died! Eat all the fucking cookies you want and shut your goddamn pie hole!”

Ruanita doesn’t like it when I curse. She will tell you that curse words sound somehow…wrong…coming out of my mouth. Prior to being diagnosed with cancer, I rarely cursed. Partly because I was a goody-two-shoes rule follower in the style of Nelly Olson from Little House on the Prairie, and partly because I never felt I was clever enough to properly utilize the colorful plethora of curse words available in the English language.

I have friends who have elevated cursing to an art form. Curse words roll off their lips like paint from Van Gogh’s paintbrush. They manage to blend and meld expletives into masterpieces worthy of the Louvre. Their swearing is at once curt and florid. They are exceptionally proficient profaners.

I am not one of these people. At least I wasn’t one of these people pre-cancer.


I no longer care if I am clever. I no longer give a fig about the artfully rendered phrase. There are some circumstances that just require a good, long, breathy FUUUUUUUUUUUUUUCCCCCKKKK.

Cancer – specifically this period post-treatment when I am coming to grips with the fact that everything is over and nothing will ever end– is one such circumstance.

I guess what I am trying to say is – life is hard right now.

Because things are mostly back to normal, everyone expects me to be all better. Everyone expects me to be whole. And I am. Don’t get me wrong. I am living my life. I am happy. I am thrilled to be here. To have my kids. My wife. My life. It’s just not always easy.

What people don’t realize is that normal is no longer normal. People joke that I no longer have the “cancer card” at my disposal. But cancer has affected me in ways that will never go away. My safety net is gone. We all have that sense that bad things can’t happen to us. We know intellectually that it isn’t true. But emotionally, we buy into it hook, line, and sinker. We believe we are immune. This belief keeps us safe. It keeps us sane. It keeps us from having to deal with everything that is scary and unsure about the world.

With cancer, that sense of safety disintegrates. And it’s impossible to regain that naiveté once it’s gone. It's like trying to get your virginity back - it ain't gonna happen, honey. I now know bad things can happen to me. And I am completely convinced bad things will happen again.

So I wait.

Wait for the other shoe to fall. Wait for the cancer to return. For every twinge. For every ache. Every pain. I wait and watch and wonder when it will be back.

And I have a lot of aches and pains these days. Because my cancer was hormone-receptor positive, I am being treated with a drug called Letrozole (Femara) that suppresses my body’s production of estrogen. It’s quite effective in preventing cancer recurrence in women with hormone-receptor positive breast cancer. But it comes with some pretty nasty side effects.

The main side effect is joint and muscle pain. I have a LOT of joint and muscle pain. Some days I am fine, but more often than not, I am hurting. My hips, thighs, knees, ankles. Everything from the waist down aches. I hobble around here like a 90-year-old woman. My hands also ache. My wrists. My fingers. Most of the time, I manage. Some days, I am in tears.

I have spoken to my doctor about the pain. I have the option of switching to a different medication – a drug called Tamoxifen. Many women find that the joint and muscle pain goes away when they switch to Tamoxifen, but the drug comes with its own set of side effects. And it is a teensy tiny bit less effective than Letrozole.

So less pain, but maybe…more cancer?

Whichever drug I land on, I will need to take it for 10 years. So I am looking at quality of life versus medication efficacy issues. Can I handle this level of pain for the next 10 years? Can I handle the risk of not handling it? My oncologist says that it is my decision. He says that Tamoxifen is a good drug, but Letrozole is a teensy bit better. but the pay-off is less pain. Less pain is something I could TOTALLY get behind.

And teensy doesn’t sound like much, after all.  

Does it?

I see my oncologist again on June 5th. He has said that, by that time, he will feel like we’ve given it a good old college try and we can call it quits and move to Tamoxifen if I want.

If I want…

What do I want? I feel like I am entirely unqualified to make this decision. I mean, who the hell am I? I’m not a doctor. I’m just a weak scaredy-cat with questionable morals, after all.

So if you hear me exhale a long, quiet FUUUUUUUUUCCCCKKK in the coming weeks, you’ll know why.  


Don’t tell Ruanita.

Tuesday, January 31, 2017

Move Along. Nothing to See Here. All Perfectly Normal.

Ruanita is sitting across from me. She is talking to me about…something. Maybe it’s about the kids. Maybe it’s about the dog. Or our bills. Or the weather. Or our summer vacation plans. I don’t know because I’m not listening.

All I want to do is punch her in the face.

She’s done nothing wrong. She’s said nothing wrong. But I am consumed by an anger that hits out of the blue and takes my breath away. My hands are shaking. My heart is racing. I take deep breaths to try to calm the rabid wolverine inside of me. Eventually the anger does fade. It passes as suddenly as it arrived, with a final, long exhale.

I am me again. And I did not punch Ruanita in the face.

This sudden, inexplicable anger comes and goes at the most inopportune of moments. Siting in traffic. Walking the aisles of Target. Trying to convince my kids that yes, they do need to empty the dishwasher when I ask them to and not an hour from now when they get bored with the video game they are playing. The anger always comes as a surprise. To those around me, but especially to me. And it is second in frequency only to the anxiety that hits on a daily basis and causes me to freeze in my tracks.

I’ve never been an extremely anxious person.

Okay, that may be a lie. When I was a kid, I had a “nervous tummy” that caused me to cry a lot and miss more than a few days of school. My mother gave me Maalox by the boatload to ease my fears and calm my raging belly. That was way back when Maalox was a prescription drug and had none of the “delicious” flavor punch it packs today. In 1980, Maalox was white. It tasted like someone had gathered together all the chalk dust floating around all the chalk boards in all the 2nd grade classrooms in all the world – and combined it in one dreadful, hated bottle. I drank it with my nose pinched and my gag reflex on high alert. And it did nothing to ease my anxiety.

I began biting my fingernails the day I first sprouted an upper tooth and a lower tooth that, in unison, could chomp onto a nail with the ferocity of an angry chihuahua trying to prove its mettle against larger and stronger dogs. I gnawed on my nails until they were nothing more than saliva-covered nubs. Then I chewed the nubs until they bled. Biting my nails gave me a sense of purpose when things around me made no sense. Biting my nails gave me a singular goal to focus on. Make it short. Make it smooth. Make it hurt.

I still bite my nails – though with less enthusiasm as I did in my youth – but my nervous stomach is a thing of the past. I survived high school. I went to college. I became an adult with a job and a mortgage and a wife and somewhat mentally stable offspring. My anxiety did not follow me past childhood. I am an anxiety-free adult.

That is, I was an anxiety-free adult.

Until now.

Up to this point, I have been extremely proud of the way in which I have managed my cancer diagnosis and treatment. Cancer did not break me. I managed to make it through treatment with an untouched bottle of Ativan and a positive attitude that I consider my saving grace.

So what the fuck is going on now?

Since completing treatment on December 30th, that bottle of Ativan is almost gone. I have trouble falling asleep at night. I feel a constant weight – like a boulder – sitting on my chest. It’s heavy and the weight of it makes it difficult to move sometimes. Even to breathe.

Apparently, this is something no one tells you about cancer treatment. The anxiety, the anger, the hopelessness, the rage, the adrenaline, the immobilizing fear – they all hit you at once. And it isn’t when you are diagnosed. It isn’t when you first hear those words, “You have cancer.” It’s not when you would expect it, in the throes of treatment. Sitting in the infusion chair during chemo. Laying topless under the humming radiation machine. Crying because the drains sewn into your sides hurt so completely that you can’t fathom ever being rid of them. It doesn’t hit when you are prepared for it. It doesn’t hit when everyone is at your side cheering you on. It doesn’t hit when people are sending cards and calling and dropping by with coffee and treats.

It happens at the end.

When it’s over. When you are just starting to feel human again. When the well-wishers have moved on, confident in their friend’s full recovery.  It hits you when you least expect. Sitting across from your wife talking about…who knows what. Because you can’t focus on the words she is saying because you are imagining your hands around the neck of the person you love most in the world. Not because you want to hurt her. But because you are so angry that you want to lash out. So outraged that this had to happen to you. To her. To your children. So angry that the last year of your life has been spent lying on a couch. Sleeping away hours upon hours that you will never get back. Missing choir concerts and soccer games and violin recitals. Apologizing over and over for not being there. For not being you. For not being human.

And that rage is fueled by fear. When I was in constant contact with my doctor, I felt safe. I felt secure in the knowledge that I was doing something to combat the monster growing inside me. That it would not grow unchecked under my skin. I was part of a team whose sole purpose was to make me better. Team Shannon. They would save me. Together, we would make everything normal again. One day.

Then that day came, and I was suddenly alone again. Sure, I have my oncologist on speed dial, but I have no appointments scheduled. I am not going to see him tomorrow. Or the next day. I don’t want to bother him. In many ways, it’s like he’s broken up with me. I’m a jilted bride. Left at the altar. I am alone in this fight. It is up to me to save me now.

Every shoulder twinge, every knee ache, every stomach turn. They are all sure signs of metastasis. Surely the cancer has spread. Surely it is growing unchecked inside me. I didn’t feel the weight of my mortality until I was better. Until I was on the road to recovery. Until I no longer needed constant monitoring. Suddenly, I am acutely aware that it could come back. It might come back. It surely will come back. I have no control whatsoever.

And this lack of control makes me incredibly anxious.

All the time.

And Facebook is scary. And we elected a fascist. And public education is in danger. And immigrants need our help. And a racist fuck-face is on the National Security Council. And my rights as a lesbian are on the chopping block. And the environment is under attack from…tree haters? And park rangers are resisting. And black lives do matter. And Twitter rants are stupid.  And I don’t own a pussy hat. And my hair is too curly. And gray. And alternative facts are not facts. And I’m not sure if all these petitions accomplish anything at all. And Sean Spicer is going to stroke out if he insists on being such an angry little troll. And I want to donate to the ACLU, but T-Mobile wants me to pay my phone bill. And the kids need to know that I am okay – now more than ever. And Ruanita misses me – wants me. But I am not sure where to find the me she wants.

Anxiety is my life right now.

I think I might puke.

I am told all of this jumbled emotional upheaval is normal. I am not a violent freak of nature. I am not even moderately weird. Now that I am not go-go-going all the time, my brain has the luxury of processing what I have been through. And those emotions that have been held in check for so long because I needed to survive the treatment have been freed now that treatment is over. And rather than take turns in a polite manner – as I would expect the emotions of a polite person like myself to behave – they have decided to all hit me at once in full force. Rather rude, if you ask me.

But I’m normal. Perfectly, pleasantly, pedantically normal.

Somehow, that doesn’t make me feel better.