4/30

Today may prove to be a watershed day in my radiation treatment.  And it’s a bit funny, because when I left the hospital today, I actually said out loud, “Well, shit.  What am I going to write about?”

Up until about 7.00pm, the only memorable thing about my 4^th radiation treatment was the amusing conversation I had with another woman in the sitting room about the fact that there are no “good” magazines in there.  And by “good,” we both meant the kind of trashy celebrity gossip magazines that are perfect to read while getting a pedicure, but nothing any rational person would actually spend good money on.  I mean, who wouldn’t have an easier go of radiation with the opportunity to deflect/reflect on the ever-changing size of Khloe Kardashian’s butt implants?  And really, I took it as a great sign that I am already so fully in the swing of things that there was nothing else to report.

But then it was time to take my evening shower.  I’ve been showering three times a day lately, because of the whole “no antiperspirant, and only natural deodorant after treatment” thing.  I’ve also been taking daily photos of my breasts, to document the effects of the radiation.  So far I’ve been pleasantly bored.  Today, I don’t see any changes, which is great; I wouldn’t expect to see changes so soon.  But I felt a change.

My surgical scar is pretty big, and there’s a lot of scar tissue under it.  So I massage it throughout the day, in an attempt to help break up some of that hard tissue. I started to massage it tonight, and realized my breast felt warm.  I touched the other one… nope.  The radiated breast felt definitively warmer than the healthy one. I thought maybe I was making it up, that I was being paranoid.  So I had my girlfriend give a second opinion, and she confirmed it.

Radiation is a weird thing to try to make real, because there’s nothing to see or feel or even do.  I go into a room, I lie on a bed, a machine glides around me, then I get up and leave.  I’m never aware that anything is happening.  It’s not like there’s some visual beam that I can watch connect with my breast tissue, some way to verify that something is happening.  There’s nothing, other than my faith in the science and my treatment team, to tell me that I’m not just being punk’d.  It literally takes longer to tie my hospital gown than it does to receive radiation treatment.

And maybe that’s why it’s been a relatively easy process so far.  I mean, maybe the reason I’m just slipping in to this routine so easily, without a lot of real emotion, walking in all smiling and joking around with everyone, is because somehow, in some optimistic/naïve/delusional way, it hasn’t been real yet.

But now my breast is warm.  It’s warm to the touch.  Because it’s being burned.  Because.  It’s.  Being.  Burned.  I know what could happen as a result of this treatment, because I made the horrifically stupid mistake of Googling photos of post-radiated breasts. I know that most of what I saw is worst-case shit. I know.  But those images may as well have been tattooed on the back of my eyelids, because I can’t un-see them; you can never, ever un-ring the bell.  So while I know what is realistic to expect, I also know what could happen.

Alice, my awesome radiation oncologist, told me that people generally react to radiation in the ways in which they generally react to being sunburned.  Well, I’m a pale-skinned Norwegian from Wisconsin, which means I burn in no more than 10 minutes in the sun, and I have layers and layers of freckles from the layers and layers of sunburns I’ve had over the years.  My skin turns pink, then red, then stop sign, then fire engine…and then the peeling begins.  Sunburns were a way of life for me growing up, a noted entry in my “what I did over summer vacation” essays, back in the olden days before we understood the importance of sun block.  Back when we were discovering fire and inventing the wheel. You know:  the 70’s.

 

So I suppose I should have anticipated that I might experience the side-effects of radiation a bit faster than some other people, since I sunburn so much faster, too.  But I didn’t.  I have been following a very strict aloe and calendula cream regimen, and I guess I thought that would protect me for at least a few weeks.  I mean, it’s only been four days!  That seems extreme, even for my Norwegian skin.  But it’s out of my hands.  It’s out of my hands.  It’s out of my hands.  4 of 30.  And it’s out of my hands.  And it’s real.  This.  Is. Happening.

3/30

Yesterday I got a bit of a reality check when I went in for my third radiation treatment.  There were a few people in the sitting room, so I plopped down, hoping to strike up a conversation with at least one of my fellow radiation-ers.  It didn’t quite work that way.

The man sitting next to me looked so frail and haggard that I kept wondering if I should hold a mirror under his nose.  He didn’t respond when I greeted him, didn’t acknowledge when I sat down on the couch next to him, and seemed to be looking right through the television.  (In his defense, that Talk show with Sharon Osborne was on, so one could hardly blame him for not actually seeing anything.)  I quickly gave up on him as my hopes started to tank.

Just when I was about to set my sights on another guy in the room, he started chatting to someone else.  His voice was loud and nasal and since the room is open, there’s no way to avoid overhearing.  He was sharing his story, of feeling some weakness in one of his arms, tolerating it for a few months, and then finally having it checked out.  He spoke of a couple of perplexed doctors who couldn’t find any reason for the nerve pain they were certain he was experiencing, until they did some sort of MRI and discovered his lung cancer.  The tumor was somehow pinching a nerve that was causing pain up and down his arm.  He spoke about the type of tumor it is, how it’s the “best” kind of lung cancer you can have, and how he’s hopeful for the future.  The woman he was speaking with said all the encouraging things you would expect in such a situation, but her eyes were telling a completely different story.  She looked at him with a combination of pity and embarrassment – she clearly thought his optimism was naïve and had all but written him off.  I wondered if he could see it as easily as I could.

While the previously immobile guy next to me lit up an e-cigarette (what in the hell ARE those things, anyway?  I understand e-mail.  I even mostly understand e-Harmony.  But an e-cigarette??) and I pretended to be fascinated by a coffee table book on rural Italy, I started thinking about my own situation, my own version of the “best” kind of breast cancer, my own random discovery.

In my case, I didn’t feel anything wrong.  Nobody did.  The danger of having dense breast tissue like mine is that it’s harder to feel lumps and harder to see them in mammograms.  There are lots of studies out there examining the link between density and mortality; it’s scary stuff.  In my case, I simply realized one day that it had been more than a year since my last mammogram, which had also been my first.  I had gone in for a baseline, sometime after I turned 40, at the urging of my nurse practitioner.  Because of how dense my breast tissue is, she said, it would make sense to get some images on the record as a point of comparison.  I had the mammogram, then got called in for a second mammogram, and then got called in for an ultrasound on my right breast.  There were some sort of calcifications, which they ended up declaring benign cysts.  It was a frightening process, but when I was sent home with a clean bill of health, I was also told to expect more of this in the following years.

So I wasn’t concerned when it happened again.  I had my regular mammogram, at which I explained the glorious nature of Groupons to this very sweet tech who apologized every time she squished my boobs between the chilly plastic plates.  I fully expected to be called in for a second set of images, which is exactly what happened.  But it was different this second time.  This time, as I waited with all the other women in hospital gowns self-consciously crossing our arms over our unbound chests, my name was called again.  And instead of just taking me back into the changing room and whispering that everything was find and that I should come back in a year, they took me into quiet little room with a computer and a few professional looking chairs.  A doctor and a nurse navigator were waiting for me.  Obviously, this was going to be a different type of conversation.

They didn’t tell me I had breast cancer, though.  They told me they found something suspicious, and that I needed to have a needle biopsy to have it studied and identified.  They didn’t diagnose me.  They didn’t spell out any doomsday scenarios for me.  But it was another step, beyond the second set of images, beyond the ultrasound.

The needle biopsy was one of the weirdest and most painful experiences of my life.  I had to lie face down on a table with a hole in it.  My breast hung down through the hole, the table was raised up, and the medical team worked on what looked like pedicure chairs below me.  I felt like a Chevy getting an oil change.  The Groupon tech held my hand and rubbed my back and basically acted like my own personal Florence Nightingale, trying desperately and unsuccessfully to get me to relax my shoulders and not fight against the process.  I ended up bruised and punctured and glad it was all over.

(Oh, and they showed me the calcifications that had been removed from my breast.  I’m not sure why, but I had assumed they would look like tiny little golf balls or something, white and round, almost like flakes of laundry soap.  Instead I was confronted with a vial of what can only be described as tiny little beige worms.  I was assured that this is what all calcifications look like, not just mine, but even so, I swear I will never eat chow main noodles ever again.)

But it turns out it still wasn’t quite all over.  The results of the needle biopsy suggested DCIS, Ductal Carcinoma In Situ.  DCIS means there is a malignancy in a milk duct, one that thankfully hasn’t burst through the duct, and is therefore the safest of all breast cancer findings.  But it’s still cancer, and it still needs to go.   I had an incisional biopsy performed on May 29^th.  The surgery was quick and relatively painless, and the recovery was just a few days of laying low.  I figured I was in the clear, despite the total Bride-of-Frankenstein lookin’ scar on my breast.  

But the DCIS diagnosis was confirmed by the surgical biopsy, and so here I am, in a radiation suite, 5 days a week for 6 weeks.   I’m aware of how extremely fortunate I am.  My cancer was found when it was absolutely tiny (between 4-5mm, about the size of the tip of a pencil), it hadn’t moved beyond the duct, the surgery removed all the malignancy and showed clean margins, I don’t have to undergo chemotherapy… it could be so, so much worse.  Just like the guy who got the “best” sort of lung cancer, I got the “best” sort of breast cancer.  Whatever that means.  

And while I have certainly had the notions of context and relativity drilled into my head throughout this experience, I have also learned that it’s vitally important for me to still honor my experience, exactly as it is, exactly what it is.  Yes, it could be so, so much worse.  I am likely to sit in these waiting rooms with people having last-ditch radiation, treatment that will be designed to possibly prolong their lives by weeks or months, but not even years.  My prognosis is excellent: while I am a relatively high risk of re-occurrences, I’m expected to finish treatment and then basically pick up where I left off.  

But none of that means I’m not still scared.  None of it means I don’t still feel cheated and angry and more than a bit disgruntled.  None of it means I didn’t have cancer removed from my body.  And while I may never understand e-cigarettes, I do understand that.  I DO understand that.  

 3 of 30, in the bank.

2/30

Yesterday I discovered what may end up being my secret weapon to getting through radiation with my sanity (relatively) intact:  lipstick.

I’m a big believer that for the most part, the way we present ourselves to the world, the way we ask to be seen, is pretty much how we will be seen, by other people as well as ourselves.  If I walk around in sweat pants and a sloppy ponytail and fugly flip-flops, not only are other people going to assume I’m a bit of a slob, but I’m probably not going to feel too confident in myself, either.  It’s stupid, really. I mean, sweatpants vs. a cute a-line circle skirt -- That actually changes who I am?  Of course it doesn’t.  But it’s a pretty effective mind-over-matter maneuver, and for me, anyway, it often works.

So yesterday I put on a new summer maxi-dress.  The dress is racer back, so I got to haul out my frequently ignored strapless bra, which always makes me feel fancy.  (I won’t be able to wear regular bras for more than another week or two, so I kinda wanted to shoot my wad on the strapless number!)  I spent slightly more than my normal 30 seconds on my hair, I put on makeup (including my signature color lipstick), wore my favorite sandals, and accessorized like I was being taken out on a first date.  I looked in the mirror and I saw a woman who was confident and strong and knew how to hold her head up in the world.  And I decided that I was going to be that woman, not just on the way to my appointment, but while I was there, too.  It didn’t matter that by the time anyone on my treatment team saw me I would have already changed into my hospital gown – I would still know what I wore to that appointment and what I would be wearing out of it.   I was going to hold my head up, look my fear in the eyes, and with my perfectly-colored lips, tell it to eat my dust.

It helped, of course, that I now knew what to expect.  My first treatment was all about coming face to face with this big, fat, scary unknown.  I had done that now, so my second treatment was more about trying to settle in to the reality that every day, for the next six weeks, I would be here, in this cancer center, with this treatment team, voluntarily allowing people to strategically burn my body.  I’m pretty resigned to my choice at this point, but when I really think about what it is that’s happening under that impressive and intimidating machine, it still makes my skin crawl.  It’s completely counterintuitive, to allow harm to be done to yourself, and every logical bone in my body wants to sprint out of that room, as fast as my legs could possibly carry me.  So there’s the mental work of quieting my brain, trusting in my doctors and my treatment team, and believing that my own strength and stubbornness will see me through it.

It also helps that Sara, one of the radiation techs, loves Sex and the City.   It’s easier to put my long-term health in the hands of a woman who believes in both Sarah Jessica Parker and Manolo Blahnik, in fairly equal amounts.

I realize this all sounds trivial and silly, like radiation is nothing more than a glorified trip to the mall on BOGO days.  But really, it’s my way of allowing myself to just be who I am through this experience, to indulge the part of me that loves shoes and ruffles and sparkly things and pretty sundresses, to hold on to those parts of me while this terrifying thing is happening to my body over which I have absolutely no control.  I don’t want my personality to change because my breast has changed. I don’t want a new default, one of gravity and fear, when my normal default is one of joyfulness and laughter.  

I don’t want to reflect the cancer – I want to reflect all the rest of me.

I don’t know exactly how to do that yet.  But I’m working on it.  2 of 30, done.

1/30

Everybody in my family dies of cancer.  That’s just what we do.

That was my understanding from the time I was old enough to know what cancer really was.  By then I had already lost my grandfather to cancer, and was in the process of losing my great-aunt as well.  I would go on to lose my aunt, uncle, and cousin, and finally, and most brutally, my momma.  It was a clear causal link in my mind: Draugsvold blood means cancer.  Period.  End of story.

But then I had this moment of clarity.  It was while my momma was dying, and I was trying to convince myself that I would somehow figure out how to put one foot in front of the other without her.  I was in the bathtub, trying desperately to relax my body in the hopes that my mind would follow.  I was running through the procession of cancer deaths in my family, the different types of cancer, the kinds of lives my people had lived… and I had this epiphany not too dissimilar from being shot out of a cannon.  My grandfather was an alcoholic and a heavy smoker.  My great-aunt was a heavy smoker.  My aunt was an alcoholic and a heavy smoker.  My uncle was an alcoholic, heavy smoker, and drug addict.  My cousin was a heavy smoker and a drug user.  My momma was a heavy smoker.  I thought about how in my family, in our world, vegetables came from cans, exercise and athletics were for people who weren’t smart enough to read, and medical orders were really suggestions, at best, and hey, who gives those doctors the right to tell me what to do, anyway?  I suddenly realized that my family had never prioritized healthy self-care, studiously maintained the traditional diet of poverty (heavy on starches and low on lean protein),  and relied almost exclusively on chemicals and mood-altering substances and activities in order to cope with the harsh realities of discontent.  It was a horrible and sad realization, that my entire family was so immersed in poverty and depression that it was slowly and predictably imploding at its own hands.

And then I realized that I had never thought to separate nature from nurture.  I had assumed that everyone in my immediate family grew cancer in their bodies because we were somehow genetically predisposed, because collectively, we drew the short genetic straw.  It never occurred to me that maybe, just maybe, we all got cancer because we all treated our bodies like shit.  It felt like an absolute revelation.  I felt like this path I had always assumed was my destiny might not be so predetermined after all. I felt like I might be able to escape my family’s version of the Kennedy Curse.

I had already started working out with a person trainer at that time, but I immediately doubled my efforts, and then, months later, doubled them again.  I completed a triathlon, and then the Portland marathon.  I eventually cut all gluten from my diet, kicked up the amount of lean protein I ate, lost almost 60lbs, and gained a good 10lbs of muscle.  Along the way, I even became a personal trainer.

I was motivated by, and almost obsessed with, my desire to break out of my family’s historical  trajectory.  I would think about my beautiful momma, depleted by chemotherapy, robbed of her joyfully ever-present curly hair, emotionally exhausted by the process of dying, and I knew that I had to do better.  I had to take all the strength she had given me, and I had to be healthier, longer.  Because I rarely ever have a cocktail, because I don’t smoke, because I’ve never used drugs, because I am very physically active, because I routinely eat my body weight in fresh produce… I felt certain that I was going to break the mold and that the cancer curse would not extend to my generation.

What’s that phrase, something about how God laughs as we make plans? 

Yesterday I had my first radiation treatment, 1 of 30, for the cancer in my right breast.  It’s gone now:  I underwent surgery to have the malignancy removed, and my surgeon is certain she removed everything gnarly and is pleased with the clean margins and clear lymph nodes.    But the standard care is a course of radiation, to prevent re-occurrences and to make absolute sure that all the malignancy was removed; any remaining traces that may have been overlooked will be zapped into oblivion by the radiation.  It took a lot of soul searching on my part to agree to the radiation treatment, as well as one weeks-long delay while I explored other options and had additional testing completed.   But at the end of the day, after several conversations with my radiation oncologist and after shopping for and finding an awesome and trustworthy medical oncologist who made the same recommendation, I made the commitment and I showed up.

There’s something weird and haunting about stepping into a cancer center.  It’s an intimidating and noble building, filled with oncology specialists and researchers and social workers and genetic counselors and technicians and radiologists and, ultimately, people like me, all wandering around with oblivious and disbelieving faces, sometimes faking confidence, but always with the same far away look in our eyes, so desperate to be seeing anything other than the walls of this place.  I remember when the cancer center was built – I live close enough that I watched it grow, day by day, beam by beam, and I was filled with a sense of gratitude that such a state-of-the-art facility was going to be of use to so many cancer patients in Portland.  Of course I never dreamed that I would be one of those people.  You’d think I would have almost planned on it, even asked to be consulted before they chose the carpet and paint colors, with the familial certainty with which I have always walked the world.  But somehow it never occurred to me that I would be there for myself.  My grandpa, great-aunt, aunt, uncle, cousin, momma… but not me.  Somehow.  

So it was with a heavy but resigned heart, and the memory of all of my people who had gone into similar buildings so many times before me, that I walked into the radiation suite Monday morning.  I was terrified, visibly shaking, feeling light-headed from the anxiety, and expecting cold taupe rooms, “comforting” muzak, and stuffy, “professional” cordiality.  What I got instead was a delightful woman named Carle, the lead tech on my radiation team, and a Minnesota Vikings fan.  That last bit might seem like a trivial detail, but as a Wisconsin-bred Green Bay Packers fan (and we all know that “fan” is short for “fanatic), these were fighting words… until she came out of the closet as a secret Packers fan because, as she succinctly put it, “everybody loves Aaron Rodgers.”   Problem solved.

My beige expectations were similarly shattered when I walked into a radiation room that looked like an experimental medical deck on the Starship Enterprise.  The machine itself is positively enormous, with a shiny black table surrounded by these crazy circular arms that whirl and click and hiss a bit as they rotate around the prostrate body below.  Almost as impressive – and thankfully less expensive --  is the mountain-scape  4-part backlit photo mounted into the ceiling, obviously meant as a lovely distraction for those of us who come there on a daily basis to have the cancer literally burned out of our bodies.  Oh, and the music was Jenny Lewis and Johnny Cash.

The first step was to get me properly lined up on the table.  I had already completed a “mapping” session, at which I was CT scanned, measured, and tattooed with three tiny freckles (one on my breast bone and one on the side of each rib cage), all designed to make sure the radiation hits all the right spots and none of the wrong ones.  So Carle and her posse used all those marks and measurements to line me up with green laser beams that criss-crossed my body like some USA Today map of American weather patterns.    

After a few X-rays, Alice, my radiation oncologist, came in to approve all the settings and get the ball rolling.  Alice is great.  She says everything positive three times.  When I first met her and she confirmed that my cancer was DCIS, she said, “good good good.”  When she examined my surgical site to check on its healing, she said “nice nice nice.”  When I asked her if she thought I would tolerate the radiation well, she said, “yes yes yes.”   I will be terrified if she ever responds to me only once; I will immediately know something is desperately wrong.

Alice gave the go-ahead and left the room.  Carle said we were ready to radiate, and she and the rest of the team left, too.  I lied there, starting at the mountains in the ceiling, wondering if I was going to feel any different.  I knew I wouldn’t feel the radiation hit my body  – radiation feels exactly like getting an X-ray: it feels like nothing at all.  But I wondered if I would FEEL it, in some intuitive way.  Like, maybe my body, knowing some foreign and weird and potentially dangerous thing was happening, would alert me to trouble, some high tech Danger, Will Robinson!  I mean, if I put my fingers on a hot burner, my fingers and my brain instantly communicate so I get my hand off the damn burner.  Because burning is bad for you.  Because heat can destroy delicate and vulnerable tissue.  And if a simple surface level burn can inspire such an immediate reaction in the brain and the corresponding body part, I wondered how my body would react when the burning happened from the inside out, and when there was nothing to instinctively move?  

The machine made its tell-tale sounds, getting itself into position to start my first radiation treatment.  I lied still, tried to breathe normally, and waited.  The machine kept adjusting itself while I stared at the bright blue sky above me, buying so completely in to the visual that I started to imagine what it would be like to camp somewhere on that mountain that was recessed into the ceiling.  After a minute or so, I started to feel a bit impatient, wondering when the treatment was going to start, when I would have answers to my questions, when I would be able to leave, put on deodorant again, and maybe stop shaking.

And then Carle came in and said we were done, that I had performed like a champ, and that she would see me tomorrow.  It had happened, without me even knowing.  I was so busy wondering how my body would feel that I didn’t realize that it never felt anything at all.  No warning bells went off, no whistles, no flashing lights or sirens.  I just hung out, mentally setting up tents and camp stoves, while I received my first dose of radiation.  Treatment 1 of 30, in the books.