14/30

I recently had an ice cream date with my best friend, Alice…not to be confused with my radiation oncologist Alice, who is also very cool, but not yet at BFF level.  We were at Salt & Straw, debating the merits of lavender in ice cream, when Alice abruptly asked me to cut to the chase and tell her what was going on; I was clearly preoccupied.  I told her I had been thinking about the fact that my breast was forever misshapen now, because of the lumpectomy I had in May.  It’s not just that there’s a prominent scar – they tell me that will fade over time and will eventually be barely noticeable.  It’s more about the shape itself.

You see, the mass my surgeon removed was almost directly behind my nipple, but off a bit to the right side.   And she didn’t just take the malignancy itself, which was only the size of a pencil tip; she had to take a wide margin of healthy tissue as well, of course.  That means the total size that was removed was, as my medical oncologist helpfully visualized, the size of a small nectarine.

That seems outrageous, especially considering I have small-ish breasts to begin with: I am a small C cup.  So a nectarine for me is the equivalent of a navel orange for most of the other women I know, including Alice.  I explained that because of the size and positioning of the incision, my nipple, without equal tissue to support it, now points a bit to the side; my left nipple points due north, but the right one tends to point in a north/northwesterly direction.  

Alice, who refers to herself as Malice when she says something (invariably hilarious but) judgmental or bitchy, immediately pointed out that my breast has a lazy eye.  We both cracked up, scaring a small child eating a waffle cone behind us.  I loved Alice in that moment, maybe more than I ever have, for making me laugh at my own body’s deformity.  Because that’s what it is: a deformity.  My surgeon and both oncologists assure me that fluid is already filling up some of the lumpectomy bed, and that my breast may yet reshape itself again.  But none of them expect it to ever look fully normal again.

And this information is sitting heavily on me.  I imagine it would be a lot to digest for most women.  But for women like me, with a 30+ year history of eating disorders and catastrophic body image problems, it feels like being sprayed in the gut with buckshot.  The fact is that I have worked my ass off, literally and metaphorically, to learn to trust and love my body.  I don’t just mean acceptance, which is way too close to tolerance and not at all what I’m after.  I mean that I have finally come to a place of full-on body love.  I can honestly say that I love my body, despite the fact that my ass looks like cottage cheese and my barn-broad hips are obviously a cruel joke passed down from one generation of my father’s family to the next.  Because what my body does for me is so much more important: it lets me see and hear and smell and taste; it lets me move when I want to move; it lets me take care of myself without having to rely on other people; it lets me experience the world with very few reservations or limitations; it lets me actually be alive, despite the fact that I will never have washboard abs.  Those realizations were a long time coming, but once they sank in, I grabbed them with both hands and ran with them.

So I thought that I was beyond the superficial concerns.  I thought I was past the point of caring about things like what my breasts look like.  I thought, apparently, I was some Superwoman, immune, somehow removed from the ridiculously perfection-driven and body obsessive culture in which I live.

Whoops.

14 of 30 is in the books.  And it was good.  Carle has been taking pity of me and playing Prince, and she and Sara both treat me like a VIP in those room, doing everything but setting up a velvet rope.  I couldn’t ask for better care, in any way.  And, my body is never going to be the same.  Superficially or internally, it’s just never going to be the same.  Somehow, in some as-yet-undeciphered way, I need to learn to be okay with that.  I need to decide that it’s okay to be okay with it.  I need to apply all the skills I learned in my eating disorder recovery to this cancer bullshit, and I need to let it go.

But for right now, I can’t help but hold on. 

13/30

I have been thinking hard about what I wanted to say about my 13th radiation treatment.  Maybe too  hard, in fact.  I keep thinking I should have something profound or insightful or at least vaguely interesting to say.  I should be deep and introspective, vigorously mentally negotiating the cancer experience with a vengeance reserved for those of us with years of therapy under our proverbial belts.

But I don't have anything to say.  I just don't.  My mind is quiet right now.  It's soft and gentle and forgiving, which is an enormous gift under these circumstances.  I know I had cancer removed from my body, I know it's likely to return (in the same spot or in another/others), I know the radiation process isn't without its own risks, and I know I'm doing the right thing for my body, my long-term mental health, and my short-term vitality.  I know those things to be true, for me, right now.  I know these aren't the right decisions for everyone, nor would they necessarily be right for me a year from now, nor a year ago.

But right now, I just have this.  And it's okay.  Today, right now, it's okay.  It's okay to be quiet.  So that's what I'm doing.

13/30

12/30

Yesterday I just about broke in two.

I was in the parking ramp outside the cancer center, making my way in for radiation.  I glanced up at the upper floors, where the patient rooms are, and stopped dead in my tracks.  There was a man sitting in the window, in one of those wheelchairs that has a really high headrest and puffy arms – he obviously spends a lot of time in that chair.  He had a blanket draped over his knees and he was looking out at the sidewalk.  He was frail and old and his eyes were heavy and unblinking.  I watched him watching other people, his head never moving but his eyes tracking everything.  I may have been projecting, but I swear I could see so much in this elderly man’s face.  I could see the sadness and the resignation and the yearning to be young and mobile and free again, free of the constraints of his body.  He had been free in his youth, when he undoubtedly ran through streets or athletic fields or even battle grounds, and he would be free again the moment he died, but for now, this was a trapped man.  This was a man with stories, with regrets, with interpersonal road maps, and with decades of experiences.  And he would have traded it all to be one of the nurses jetting across the street in practical shoes and a set of earbuds, whose only immediately concern was being on time for work.

I probably would have stared at him for hours if a car hadn’t whipped around the corner of the ramp with a Tony Stewart vengeance, scaring the crap out of me and reminding me that I was actually there for a reason, not just to stand in the middle of the road and silently fall in love with this man in the window.  I walked across the skyway and into the building, still watching him, rubbernecking until he was out of my view.  I wanted to find him, to find his room, to sit next to him, to silently hold his liver spotted hands and just breathe with him. I went to treatment instead. 

But I think he might haunt me.

So it seems a bit stupid to talk about the fact that I wore my Green Bay Packers cheese wedge earrings to treatment, to taunt Carle just a little bit.  I think it worked, especially as I flipped my hair back and tilted my head to the side and waited for her to notice.  She cracked up, commented on how squishy they were, and we went to work.

“Work,” however, had to wait for one last adjustment.  Not only was it another X-Ray day (these happen once a week), but it was time for me to add a little personal oasis to the treatment room…in the form of Vincent D’Onofrio.  As promised, I brought an 8x10 color photo of my TV boyfriend with me, and Carle and Sarah immediately made the magic happen.  Carle stood on the treatment table while Sarah raised it and manipulated the machinery out of the way.  They both made a point of telling me that Carle is afraid of heights, but she got up on that table just the same.  When it was done, I had the most amazing view.

I’m not sure if Carle was trying to taunt me again today with her musical choice, but if she was, it backfired in a hard way.  She played “Islands in the Stream,” probably not knowing that I positively adore Dolly Parton. 

So I happily hummed along, looking at Vinny on the ceiling, getting lost in his features…and suddenly I was staring at the man in the window again.   

There must have been a time in his life when he looked more like Vinny than he did a scarecrow.  He might never have been 6’3” with a full head of thick Italian hair and shoulders like the broad side of a barn.  But he didn’t always look scared and frail and fundamentally alone.  He must surely have been vibrant and engaged and someone’s idea of handsome.  I tell everyone that Vincent is only my TV boyfriend if you go back a good 10 years – he has not aged well.  Because I’m fickle and superficial, just like everyone else.  Because I love attractive people in their prime, and I love old people in wheelchairs, but I’m terrified of what happens in between.  I’m horrified by the process that steals the faith from people’s eyes.  I’m furious with the diseases that make strong and capable people suddenly weak and child-like.  And I’m paralyzed with the fear that I’m one of those people, in that stage of my life.  I’m positively shit-scared that I am losing a part of myself to this cancer, to this treatment, and that I will never get it back.  I don’t know how it could be any other way, how the light in my eyes couldn’t dim just a tiny bit.  Because that’s how it happens – one tiny step at a time.

Right after my treatment I met with Dawn, the radiation oncology social worker, and she kept telling me what a great job I’m doing, that I’m asking for help from the people who have proven they are willing to be present and to give it, that I’m showing up and keeping my humor intact, that I’m practicing good self-care.  She mentioned that thing about how the Chinese word for crisis is a combination of danger and opportunity.  That’s not exactly right – if Wikipedia can be trusted on this point, the western interpretation is a bit too simplistic – but I understood and took her point.  I get it: the best people will find possibilities in the most challenging of circumstances.  I get it.  But that man in the window, helpless in his wheelchair, dependent on the people around him for the most basic of care… where is his opportunity in this crisis?

12 of 30.

11/30

I may have underestimated Carle.  This is not like me, and I’m a bit afraid.

Today I showed up in a Green Bay Packers t-shirt, over my hospital gown.  My girlfriend was there with me, and she was also sportin’ some green and gold.  I thought we were going to overtake Carle with our Packers Pride, but there she was, all defiant and equally proud, ready to tell me there was not one, not two, but four radiation therapists working there who are Vikings fans!  How does something like this even happen? I was disheartened, to say the least, and immediately decided I need to up my game: I’m gonna have to wear my cheesehead.

I also underestimated her ability to wow me with absolutely horrid music.  Today she played “Almost Paradise.”  And when I say that she played it, what I actually mean is that she assaulted me with it.  She cranked up the volume, left the room, and abandoned me to shriek out in pain as Mike Reno tried to woo Ann Wilson (Oh, Ann – how could you?!?) to visions of a dancing Kevin Bacon.  My girlfriend thought it was oh, so hilarious (she wasn’t being subjected to it at the decibels I was, mind you), and Carle looked like the cat who just swallowed the canary when she pranced in to announce that it was a “good treatment today!”  It could easily have been complete torture.

But I was saved by the unlikeliest of knights in shining armor.  Today I had my treatment in a different radiation room, one I had never seen before.  Like my normal room, this one also has a huge mountainous wilderness photo inlayed in the ceiling, which was both reassuring in its consistency and a nice visual change of pace.  But if you look closely at the picture, you will also see the most critical difference between the two rooms:  the floating head of Denzel Washington!  What a lovely focal point Mr. Smile provided, and I have to admit that I really did stare at him the whole time.  Granted, I was also trying to desperately mute the Footloose soundtrack in my head.  But still.

And it got me to thinking about how many people have done so much to try to personalize their experiences with cancer, treatment, and recovery.  Every day I see half-completed puzzles in the waiting room, where people have obviously decided to make themselves at home while they wait for their turn on a radiation table.  There are always coffee cups and magazines laying open, and sometimes people even leave notes for one another on the white board.  There’s a basket of hats, for people who have lost their hair to chemo, and it’s amazing how different they all are, a real effort to let people still express themselves, to still be who they are, even while dealing with all the heartache of this treatment.  And somebody, maybe last week or last year, decided that taping a picture of Denzel Washington to the ceiling was going to help her or him get through the experience just a little bit more completely, with a bit more humor or sanity intact, with a bit more grace.  

So I’m going to do the same.  Tomorrow, I’m bringing in a picture of my TV boyfriend, my own tall, dark, and handsome, Vincent D’Onfrio.  I’m going to ask Carle to tape his picture to the ceiling in my regular radiation room, as my own reminder that while this experience is happening to me, and while I have no ability to control the radiation itself, I do have some ability to control the experience of it.  I can look at Vincent’s brooding-yet-sensitive face, day dream about Law & Order: Criminal Intent and The Whole Wide World and even the horrible The Velocity of Gary and remind myself that I’m still me, even when foreign stuff is happening and foreign feelings are threatening to take over my foreign-feeling body.  That I still love what I love (Vincent) and hate what I hate (“Almost Paradise”) and there’s nothing these machines or this disease can ever do to change that.  Not even Carle can do that.

11 of 30, done. 

10/30

Friday’s treatment was, generously speaking, not the best.

Actually, it wasn’t the treatment itself that was horrible. It was the day that preceded it. I had two prior medical appointments that day, and one of them did not go the way I wanted it to go.  I am now looking at yet more invasive testing procedures for a whole separate problem (because an auto-immune disease, a genetic mutation, a bone being popped out of place, and breast cancer is not enough right now, apparently), and I just kinda lost my shit.  There’s only so much one person can be expected to bear all at once, only so much weight one can shoulder. I think I actually hit my quota even before my cancer diagnosis.  So by the time my GP nurse practitioner told me to start mentally preparing myself for a gynecological ultrasound, I just pretty much lost my shit.

And I felt like giving up.  I was so overwhelmed, so sad, so fucking pissed.  I was driving like a woman with terminal road rage, cursing out people for walking too slowly in crosswalks, for taking too long to decide where to park, for not, ostensibly, anticipating my needs.  It was ridiculous, but it was so real at the time.  I just wanted to screw it all.  I started thinking about the upside of willful ignorance.  As a reformed academic, this is big deal stuff. I mean, I spent about 100 years in grad school, and there was never one moment when I ever thought I’d be better off just shutting my eyes to the world.  But Friday afternoon, heading in to the cancer center, I was just done.  Just fucking done.  I wanted to be one of those people who never goes to see a doctor, who never asks the questions, who just lives until they die, never knowing the difference and never caring.  I wanted to be dumb, basically.

And then this happened:

Oh, Carle.  Oh, my dear, dear Carle.  You have no idea the war you have just started.

To be honest, I felt a bit bad about it.  I mean, on any other day, I would have cracked up, given her a month’s ration of smack talk, and loved every minute of it.  As a bold and emboldened Green Bay Packer’s fan, I would have proudly asked her how many of my team’s sloppy seconds her team was planning to sign in order to win division games.  I would have declared the friendliest of wars, and come hell or high water, I would have won.  

But on Friday, it was all I could to keep my frustrations to myself and try to force a smile.  Carle knew, of course.  She was probably disappointed that she didn’t get a better reaction from me, understandably.  But  she was wonderful and supportive, and didn’t even make fun of me when I lied on that radiation table and just silently cried, tears running sideways down my face and in to my ears…which feels really weird, by the way.  She let me take the previous picture of her shirt (“You’re just gonna see my cans,” she complained, until I reminded her that she sees my cans every day), and then…she did it.  She managed to come up with a ballad that made me cringe outwardly and cry inward:  Dionne Warwick’s “That’s What Friends Are For.”  For the love all things good and decent, really?!?  Oh, Carle.  

It was a hard day all around.  I left after treatment was over, trying but failing to make my normal fun conversation with the radiation team.  I was dejected and frustrated and overwhelmed and pissed and angry and sad and just entirely, 100% done.  I still feel that way.  Or I want to, I suppose.  But I’ll be back there Monday, because what choice do I have?  I’ll be back there with the knowledge that after completing 1/3 of my treatment, there’s cause to celebrate.  I’ll be back with a renewed faith in my decisions and my treatment team.  I’ll be back with a goddamn Green Bay Packers t-shirt!

10 of 30, a full 1/3, done.