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!



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.