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!

Tuesday, November 29, 2016

Where Did I Go?

Today I completed my 10th radiation treatment. I am a third of the way done. If I were a glass-half-full sort of cancer patient, that would be something to celebrate. My cancer personality, however, tends to lean toward a more morose interpretation of events.

I have 20 more treatments to go.

Ugh, that sounds like a lot, doesn't it? That’s a full four more weeks of radiation – even longer if you deduct for the Christmas holiday.

If I’m being honest, I don’t hate radiation. I got off to a pretty rough start, but it has steadily improved since then. (Ativan has certainly helped.) I’m an old pro now. I walk in the place and the receptionist waves me on, chirping, “I’ll get you checked in, Shannon.” I take off my top and put on the hospital’s stylish-in-a-1970s-wrap-dress-gone-horribly-awry-sort-of-way pink-on-more-pink smock. Then I am almost immediately taken back for radiation where I perform a sad table dance flat on my back and naked, while breathing heavily in front of three young 20-something technicians. (Weirdly, it’s not nearly as fun as it sounds.) Every Tuesday, I see my doctor who assures me that I am looking fabulous (despite irrefutable evidence to the contrary). I let myself believe her for a minute or two, and then I am on my way. Sure, it’s a hassle to drive all the way to downtown Saint Paul at 7:00 every morning, but a skim turtle mocha with white chocolate from Caribou often helps ease the pain of the round trip.

You may find this hard to believe but – despite my cheerful exterior – I am feeling rather down today. I feel at this point that I might just have survived cancer. Maybe. It’s not over, of course, but I am feeling somewhat confident that maybe everything will be okay. Maybe I will not die after all. Maybe I will see my children grow up. Maybe I will hold my grandchildren one day. If nothing else, maybe I will live long enough to get an iPhone 8.

So if I am feeling so positive about my prognosis, why am I down?

This is going to sound totally ridiculous, but…I don’t like the way I look. (*cringe*)

I beat cancer. I am almost done with treatment, and I fucking lived to tell the story. Who cares what I look like as long as I am alive, right? How shallow can a person possibly be?

I am not a vain person. Really, I’m not. I never have been. I know I am not a beauty queen. I am “pleasantly plump.” My hair has always been too wavy to be straight and too straight to be curly. My nose is big and I have a giant chin that rivals Jay Leno. Why would I care what I look like?

Well, I don’t really. It’s more complicated than just “I don’t like the way I look.” The thing is that I don’t look like ME. My body is not the body that I lived in for 43 years before being diagnosed with breast cancer. I used to know myself intimately. I knew what my body was capable of doing. I knew what it was not. I knew how it would react – to my movements, to my thoughts, to stress and anger and love and happiness. I knew that if I missed more than one day of my birth control pills, I would undoubtedly get a zit on my chin. I knew that my knees would hurt every time it rained and randomly for 4-5 days every six months or so. I knew that I would gag every time I brushed my teeth, even 10 years after it first began when I was pregnant with my twins. And I knew wine was my friend and beer was a life-long nemesis to my gastro-intestinal tract.  

I knew my body.

These days, my body is not my own. My hands fall asleep whenever they feel like it and refuse to wake up no matter what I do. There are days when my legs act like they’ve forgotten how to hold me up. I can fall asleep anywhere, anytime – except in my own bed at 2am. I’ve gained twenty pounds, but it feels more like fifty since my lack of boob accentuates my overabundance of belly. And the lack of boob is probably not noticeable to other people, but to me it feels like I am walking around with a missing arm or a missing leg. Part of me is gone that should be there. And I am certain everyone sees it. Everyone sees me. Or rather, everyone sees the lack of me. It’s hard to explain the feeling, but it compels me to pull my cardigan close around my body and fold my arms across my chest in an attempt to shrink myself right out of sight.

And then there is my hair. It is coming back in thick, but entirely too slow for my taste. I have friends who wear their hair as short as mine is now and they are beautiful and bad-ass and bright stars in an otherwise dark sky. But their style is not my style. I don’t look like me with extremely short hair. I don’t feel like me. I am self-conscious ALL THE TIME. The woman at IKEA calls me “sir” and I shrink a tiny bit more. It is quite ridiculous to be so consumed by one’s appearance, but I just want to look like me again – with all my foibles and flaws, I just want to be me.

I have breast inserts that I can wear in a bra. When I wear them, I feel a little less conscious of my differentness. I feel a tiny bit less dissonance between who I am and who I once was. I don’t feel the need to fold in on myself. But the bras are uncomfortable. The inserts are hot and heavy. The holes where my drains once were are healed, but still tender. The bra band sits right on these scars. And it needs to be tight to keep from riding up. I sometimes feel like I am being choked when I wear my boobs – as if an invisible snake is constricting me until there is nothing left of me but a spine and a couple chunks of silicone. The choice to be boobed or boobless is a no-win at this point.

Last night, my children had a performance at a local Barnes and Noble. Sophie played the violin and then Sophie and Lucas sang with their respective school choirs. I wouldn’t have missed it for the world. I wore jeans and a t-shirt with a hoodie over the shirt. I chose not to wear my boobs for the reasons outlined above. Unfortunately, when the crowds gathered, it became so hot in that little corner of the bookstore that I couldn’t possible wear my hoodie. Without my protective covering, I sat with my arms crossed, trying to hide my concave chest – my belly hanging out below my arms. After a year with no sun, my arms were paler even than my wife’s normally translucent skin. The hair on my head was wet with sweat. I was incredibly uncomfortable throughout the entire performance because I was so wrapped up in how I felt about how I looked that I couldn’t focus on the reason we were there.

This is not me.

I do not like this person. But I do not know how to get rid of her. I am told that I will eventually get used to this new normal, that I will reach a day when I will feel comfortable in my own skin again.

Right now I am doubtful.

Wednesday, November 16, 2016

Radiation - A Piece of Cake??

Me. I survived.

Radiation is easy.

After enduring five months of chemotherapy and the pain and debilitation of a bilateral mastectomy, radiation is supposed to be a piece of cake. This phase of cancer treatment is often said to be the easiest of The Big Three.

I mean, well…it will cause a little fatigue. And they are aiming levels of radiation long considered dangerous for human beings at my bare chest. And the doctor did tell me that she does intend to burn my skin to the point of blistering to properly treat the area. And I am pretty certain my heart and lungs are both located inside my chest. Those are kind of important organs for your everyday, basic quality of life. Did I mention the radiation levels long-considered unsafe for human consumption?

But I will keep my hair! So there is that.

I had my first radiation session yesterday. I picked my mom up at the airport at midnight the night before. After dropping her off safely at home, I found myself unable to go to sleep. My brain was stuck in cancer mode. For those of you not familiar with cancer mode, it goes a little something like this:

Tomorrow is my first radiation. I hope it will kill all the cancer and keep it from coming back. But what if it doesn’t? What if it comes back in my bones? My knee hurt all last week. I thought it was just my normal every-six-months flair up. But what if that was bone cancer? And I peed in my pants this morning when I did not make it the bathroom in time. What if that was bladder cancer? I should buy some new underwear. Just to have on hand. Pretty undies. I like the colorful, comfortable ones from Lane Bryant. But what if I lose weight? I want to lose weight. I need to lose weight. Then I would need skinny underwear. But losing weight is so hard for me. Why is it so hard? Maybe I have adrenal cancer? Maybe I am just fluffy and not fat. I don’t really eat that much. Really. McDonalds this morning doesn’t count. Neither does the large turtle mocha from Caribou. I should be really be even fatter than I am. What if I have stomach cancer?

That, my friends, is the brain’s cancer mode. Unsurprisingly, I was up all night brain-blathering, so I did not get any sleep at all. Lack of sleep combined with a touch of claustrophobia and a healthy dose of fear of drowning/being buried alive led to a memorable and altogether miserable first radiation treatment.

Last week when I was tested and scanned and measured for radiation, I was told that women receiving radiation for breast cancer fall into two groups. The first group is comprised of women whose heart does not move at all when they inhale deeply. These women are allowed to breath normally during radiation. The second group is comprised of women whose heart shifts slightly to the right and away from the chest wall when they inhale deeply. These women are asked to hold their breath during radiation, allowing the heart to move completely out of the radiation field.

Guess which group I fall into?

That’s right! I am one of the lucky few who are able to hold their breath and thereby shift their hearts right out of the radiation field. Yay! No heart damage! Never mind that 1.) Fat girls are generally not incredibly talented at holding their breath – particularly when lying flat on their backs, and 2.) I have an unnaturally robust fear of drowning and/or being buried alive.

So I did not start radiation in a very good mental place – even in the waiting room. After working myself up to a nervous pacing around the room, I was finally led back to a dim room full of machines and asked to lie down on a flat table that was hard as marble and barely as wide as my hips. My head and left arm went into a (hard) mold that was made specifically for me. My head was turned away from my chest at a weird angle, and my left arm was resting above my head. My right hand had to be tucked under my arse so my arm would not dangle precariously from the narrow table. It almost instantly fell asleep, of course. Big machines whirred above me and to the left and right of me. (Move along, people! No claustrophobia triggers here!) A small box was taped to my big, white belly so the technicians could watch my breathing.

Not me. But this is what the machine looks like.
I was asked repeatedly to take a deep breath and hold it. I am really, really bad at holding my breath. I mean, like pathetically bad. Ten seconds is about all I can muster at the best of times. Tired and in the throes of a claustrophobic conniption, I could barely muster seven. By the time my radiation was finished, I had worked myself up into a full-blown tizzy. My face was white as a ghost. I felt like I was going to vomit on the radiation machine (which I am sure would have resulted in a fairly hefty bill for damages). I was dizzy and hyperventilating. I wanted nothing more than to rush to the toilet in the dressing room (they have a separate dressing area for women who are receiving radiation to their chests) and hurl.

But no…I see the doctor on Tuesdays.

I was taken to an exam room to meet with the doctor even though it was only my first treatment. The nurse obviously thought I was having a “spell” of some sort – perhaps of a psychiatric nature. She quickly took my blood pressure (which happened to be 145 over 95 at the time - Yowza!) without taking her eyes off me. I think she truly expected my head to start spinning and pea soup to fly across the room. I am sure she was plotting her escape. The nurse quickly rushed off to get me some water and saltines, and then fled the room. 

When my doctor came in, I had managed to get control of my hyperventilation, but I was still pale and shaky. The doctor tried to make me feel better by saying, “This sometimes happens.” Her eyes, however, clearly said, “WTF is wrong with this psycho chick??” She wrote me a prescription for Ativan (I had run out during chemo) and encouraged me to take it. I apologized profusely for my over-reaction, and even started crying in front of the doctor. What the hell?? I don’t cry in public, as a general rule. Actually, I rarely cry if at all avoidable. So at this point, my own eyes were clearly saying, “WTF is wrong with this psycho chick??” It was somewhat comforting that my doctor and I were on the same page.

After being dismissed from the exam room, teary-eyed, I wobbled to the women’s dressing room, locked myself in one of the changing rooms, and laid on the padded changing bench for at least 10 minutes – possibly 15 – before I could muster the mental capacity needed to put my t-shirt and sweater back on.

After that, I called Ruanita from the parking lot and bawled. I had insisted that she did not need to come with me because radiation “is a piece of cake.” Needless to say, calling her crying might not have been the best idea. Now she fully intends to accompany me to every single radiation treatment I have every day for the next six and a half weeks. Should be fun.

This morning, I took two Ativan before heading to the hospital for my radiation treatment. The treatment went much smoother today. I did not hyperventilate. I did not cry. I did not vomit. Holding my breath for the required time was not necessarily any easier, but I was much more relaxed about the whole thing. We were in and out in no time at all.

Moral of the story: Shannon should be highly medicated, not just for medical procedures, but as a general, everyday rule to live by.