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.

Monday, December 19, 2016

Can We Be Done with 2016 Already??

I thought chemo was tough. I thought recovering from surgery was hell. Then I started radiation…

The process of receiving radiation in and of itself is not that bad. Aside from a slight case of claustrophobia induced by a large machine spinning around me and the quickly-wearing-off novelty of driving to downtown St. Paul at 7:00 each morning, it’s not so bad. The radiation itself is not painful. The technicians are chatty and fun. My radiation oncologist is friendly and informative. And everybody knows my name. In that way, it is kind of like a certain 80s era Boston bar.

Any resemblance to Cheers, however, ends after about the 20th treatment. That is when the skin begins to itch. When it begins to peel. When it begins to hurt like a motherfucker. When is becomes such a deep, dark red color that it looks almost black. That is when the fatigue kicks in full force. When the simple act of running to Target becomes a barely surmountable test of endurance. When fatigue forces you to bed well before your grown-up bedtime. Like a toddler who has been naughty.

That is where I am sitting right now.

I’m pretty miserable, but at least I can tell myself that it’ll all be over next Tuesday, I will complete the BIG THREE treatments in 2016! I’m not sure why this is important to me, but I want to put this year behind me for good. I want to finish the major treatments and move on to the much easier medication phase in 2017. So despite the pain and fatigue, the end is near.

But wait…

I overslept this morning. That is a surprisingly easy thing to do when you are exhausted beyond ridiculousness and every other creature in your house – human and canine – are on Winter Break or do not have to be at work until noon. Everyone else gets to sleep in, but I get to go to radiation.

I normally leave my house at 6:45 to allow for a quick stop at Caribou for my morning cup of life-instilling deliciousness. This morning, however, I woke up at 6:45. This was quickly followed by a creative – and impressive, if I do say so, myself – chorus of curse words as I pulled on clothes and quickly ran a toothbrush haphazardly across my teeth.

Hair be damned.

No coffee for me.

I rushed to get to the hospital on time. My daily appointment is at 7:30. I made it there at precisely 7:31. Not bad for a caffeine-deficient corpse on wheels! I undressed, put on the lovely pink smock, and lay down on the table – all prepared to get it done so I could be on my not-so-merry way.

The technician took one look at me on the table and said, “Ooohh…wow. Has the doctor seen this?”

Over the weekend, I had begun to peel. The spot directly over my collarbone is especially raw and ugly. I am also peeling in my armpit and the skin under my armpit is way too close to black for my comfort. Though I have met some incredibly beautiful women in my lifetime with brown or black skin, it’s not really normal for a pasty white girl like me to have black skin. Honestly, it’s kind of freaking me out a bit,

The radiation technician immediately went to get the doctor, who came in, leaned over me and whispered, “Oh, dear.” Not exactly what you want to hear from your cancer doctor. He went on to say that there would be no radiation for me today. In addition, he was giving me tomorrow off, as well. Apparently my skin needs time to heal before we continue with the radiation treatment.

So that thing I said about knowing, at least, that my treatment would be over next Tuesday? Yeah, that ain’t gonna happen. I am not getting a total reprieve from radiation – simply a break. The two days I am missing will be tagged onto the end. That means, as it stands, I will complete radiation on December 30th. Considering the current condition of my skin (raw, peeling, black, and incredibly painful), it is entirely possible that I will need an additional “break” or two before I am done. Any more than one additional day will push me into 2017.

This really means nothing, except that it means everything. It is purely symbolic that I want to complete radiation in 2016. Realistically, I know that I will never be done with cancer. Or rather, cancer will never be done with me. I will be followed by my oncologist for the next ten years, at least. And even beyond that, there will always be the lingering “what ifs.” What if that twinge in my shoulder is cancer? What if that ache in my hip is cancer? What if the normal, everyday aches and pains of aging are neither normal nor everyday for me?

What if…what if…

I will live with the “what ifs” for years to come, but there is something significant to me about closing the book on 2016. My symptoms started in January, I was diagnosed in March, started chemo in April, had surgery in September, and finished radiation in December. One year of my life gone. One entire year, but only one year. 2016 sucked like no other year before it, but it will soon be over and done. The worst of my treatment complete.  

Or maybe not.

Silver Lining: I seem to have forgotten with my last few posts the “silver lining” I promised to always look for at the beginning of this whole mess. So today’s silver lining? I ate Campbell’s chicken and stars for lunch today. It’s my go-to “sick and depressed” meal…and it was unusually comforting and delicious.

Monday, December 05, 2016

Wish Me Luck!

This is supposed to be a thumbs up. Selfies are hard.
I’m taking a rather large and consequential leap forward in my personal growth as a human being this week. I’ve made an appointment with a therapist to deal with my weirdness about my cancer. I have never seen a therapist before, not because I have stellar mental health, but because I consider myself pretty skilled at faking stellar mental health. So this is a first for me. Time to put my weirdness about cancer out in the open.

I say “weirdness” because I do not otherwise know how to explain it. I am not sad. I don’t cry. As a matter of fact, the only time I have really cried at all was in the days following my mastectomy, and that had more to do with being in a ridiculous amount of pain and desperately wanting to sleep, and less to do with sadness or fear about my diagnosis. I am not really scared. I do not dwell on death. I can honestly say that I do not think about death any more these days that I did prior to my diagnosis. I don’t dream about death. I dream bizarre dreams about oatmeal cream pies and worms that turn into lo mein noodles (last night’s dream). And I am not angry – at least no angrier than I was before my diagnosis. I should be apoplectic with rage, but I don’t even feel a miniscule bubbling of low-level outrage. I am more pissed about Ben Carson being named HUD Secretary than I am about the last nine months of cancer treatment!

And that’s the weird thing. When you hear about someone being diagnosed with cancer – especially someone young (somewhat) and relatively healthy (somewhat) – you assume they will feel sad, scared, and angry. Those are kind of the BIG THREE when it comes to cancer emotionality. So what is wrong with me that I don’t really feel any of these?

That’s what I am hoping a therapist can tell me.

I’ll tell you what I do feel. I feel numb. I feel numb a lot of the time. I see my mother upset. I see Ruanita terrified. I see my kids reacting in ways that are new to them this year. Nicky suddenly loves his “blankies” again and takes them everywhere he goes. Lucas is apologetic to a fault – every real or imagined trespass is immediately met with zealous amends. And Sophie is so hot and cold with me that I don’t think even she knows if she likes me at any given moment. She has mastered the irrational anger I should be feeling.

But all I feel is numb. A sluggish numbness. Like I have fallen into a sort of conscious coma.  And in the meantime, I have been replaced by a different person who I do not recognize. She goes to work at my job. She lives with my family. She sleeps in the bed with my wife. She has everyone fooled. They think she is me, but I’m the bystander off in the corner. Watching quietly. Wondering if I will ever be me again.

That sounds sort of insane, doesn’t it? Kind of Sybil-like? I promise I do not have a split personality (that I am aware of). And it’s not like I do not appreciate the pain and uncertainty that my family is experiencing. It breaks my heart that they are suffering on my behalf. But I don’t seem to have those same deep emotional currents. I don’t feel those highs and lows where my treatment is concerned. I just feel numb. Detached from the whole shitty thing.

This past Saturday marked the 33rd anniversary of my dad’s death from brain cancer. He was thirty-three years old when he died. He’s now been dead and gone for the same amount of time that he was alive and moving through the lives of his friends and family.  Unlike my siblings who were too young to remember, I vividly remember his funeral. I remember his casket in the front of the church. Everyone around me was crying. I could not seem to get a tear to fall. I stared wide-eyed – unblinking – at his casket. If I stared hard enough for long enough, surely my eyes would water. Surely I could cry like everyone else. I could show everyone that I loved him just as much as they did.

Even then, at eleven years old, all I could muster was a sense of numb inevitability. A blunt and listless detachment. Just as they are now, tears seemed well beyond my grasp.

But it’s not about tears, is it? It’s not about whether I can cry or not cry. Rage or not rage. It’s about coming to terms. On my own terms. And as seemingly positive as I am, I’m not sure that I have done that yet. I have this sinking feeling that the only way I am going to be able to evict the bitch who has taken over my life and step out of that corner once again is to face my feelings about my inadequacies. To look at myself honestly and without bias and learn to see the beauty and value that lies within – boobless or not. Tearful or not. Angry or not. To look beyond my “weirdness” about my diagnosis and truly believe that it is okay. However I feel. However I respond. It’s okay. And to do that, I am certainly going to need some help. So I am seeing a therapist for the first time in my adult life on Wednesday.

Wish me luck.

Or rather, wish her luck!