My friends and scholars at Not Your Mama’s Gamer are streaming Video games on Twitch and taking donations for the National Breast Cancer Foundation which provides mammogram, education and support for women in need. 80% of donations goes directly to help patients–compare that to some other breast cancer charities!
If you’re a long- time reader, I think you’ll enjoy the stream and feel good about giving. If you’re a new reader, this cause is probably as close to your heart as it is mine. Plus, you might learn something new about video games! Hint: it’s not just teenagers in basements.
Heck, if you don’t give a poop about gaming, you can throw five bucks at NBCF so someone less fortunate can get a potentially life-saving boobsquish.
Thank you, thank you from the bottom of my cancer free boobs!
I’ve been meaning for months now to write a post about how similar cancer and pregnancy are. Basically, your body isn’t your own, people are amazingly supportive, there is a ton of literature and personal stories of friends and acquaintances to take place of statistics and the unknowable. I was going to be much more in-depth and humorous, but that’s the gist of it. (Maybe I’ll get it right in the book. Should I do a book?)
My final point in the cancer-is-a-baby-you-never-asked-for theory–and the one that’s especially relevant for me now–is overestimating the “after.” When I was vastly pregnant with my youngest spawn I remember looking at thin people in magazines and on TV and thinking “as soon as I drop this load of baby I’m gonna squeeze my ass into that there miniskirt and drink five margaritas and DANCE!” etc. During chemo and surgery and radiation I had a lot of similar thoughts about how I was going to bound up out of this “sickness” and just be ON FIRE FOR LIFE! So full of energy and appetite and enthusiasm! Unstoppable!
Well, those notions were just as unrealistic as the post-baby ones. Six years later I have yet to squeeze into that there miniskirt (and at this point I think my miniskirt days are done even if I were svelte).
I have been stuck in an existential quagmire. Thinking about what’s next and if anything is next. What I’m trying to say is that it’s hard to plan for an uncertain future. Yes, yes, I know “any of us could get hit by a bus tomorrow!” but honestly, when you say that to me it’s as if you’re dismissing my actual legitimate concerns. Here’s a cold, hard, fact: There’s a 30% chance that I’ll be dead in five years. That’s not me being a pessimist; that’s reality.
Now, I’m doing everything I need to do to be in the 70% on this. I’m still getting Herceptin infusions every three weeks through April, and I’ll be on hormone therapy (aromatase inhibitors) until 2021, and of course I’ll have annual mammograms.
But cancer is a sneaky, persistent little fucker, and if it feels like coming back, it’s going to.
So, I can live with that. But it’s hard to LIVE with that. It’s difficult to make long-term plans under that kind of cloud. For instance, I would like to go back to school. I’m 15 credits short of completing my bachelor’s degree and it’s something that I regret not finishing. BUT, what I’d really like to do is get a degree in something healthcare-related and that would require many many more credits than 15. But here’s the thing: How much money and effort and time I’d be studying and ignoring my family am I willing to spend if I only get five years? Or four? Or three?
But if I’m in the 70%, what if five years goes by and I’m cancer-free but I’m still at square one on that degree because I was too scared and worried to start something I might not be able to finish?
I’m having trouble bouncing back from this cancer business. Physically, my complaints are few: My armpit is still numb from surgery. My right boob is noticeably smaller than my left (both surgery and radiation contributed to this). I have scars and a medi-port. My eyebrows and eyelashes are sparse. Chemo brain hasn’t abated much. Luckily, I’m a writer, so when I can’t for the life of me come up with “calves” I improvise “shin butts.” My hair is coming in pretty well and I think it says “unfortunate haircut” more than “cancer” now.
Emotionally/psychologically? I’m having a rough time. Crippled with indecision, angst, and weltschmerz based on an unknowable future I turn to Samuel Beckett.
“I can’t go on. I’ll go on.”
So, I’m taking baby steps back into the World, and I hope the World will welcome me.
Yes, I’m one of those annoying people that read The Life-Changing Magic of Tidying Up. I started tidying (which should be called “throwing out”) on January 1, and while I don’t think my life has changed much, I’ve definitely learned some things.
First of all, I am sort of bulimic when it comes to possessions. I acquire and hoard (the binge) for a decade and then I purge things in a giant “fuck this shit” explosion. In my last purgesplosion I threw away a lifetime’s worth of journals and all of my school yearbooks. If you are a writer you will understand the exquisite pain that haunts me about that decision.
The ten or so years in between binge and purge are very, very cluttered. So. January 1 rolls around and I’m going to get started. I begin with the sock drawer. A giant sock drawer that contains a universe of socks: athletic socks, knee highs, fuzzy socks with lotion cooked in, socks with capes, socks that haven’t seen their mate in years. A lot of fucking socks.
So here’s the thing with the KonMari method: you hold each object in your hand and if it “sparks joy” you can keep it. Otherwise, out it goes. This can be a tough call. Because what might at first register as “joy” is really something else. It might be “But so-and-so GAVE me those,” or “But I might want to wear those in a Halloween costume one day.” That’s not joy; that’s rationalization. Unless I owned both socks, they were still in good shape, and they made me happy to put them on my feet, they went in the giant black trash bag.
After socks I did underwear. I folded them reverently and precisely until two madcap drawers of crazy became one small drawer of peace and order.
Shirts were next. I went from this
Now every shirt I put on gives me that “Hey, this looks and feels good” spark. I’m not wearing also-ran black t-shirts, I’m wearing the good black t-shirts that feel just right.
But I’ll be honest, some of those shirts were really hard to get rid of. In particular my Xbox and GamerchiX garb that I’ve been hoarding for sentimental reasons even though I left Microsoft over five years ago. Here is where what is magic and different about Marie Kondo’s book comes in. I was able to tell those shirts and hoodies “Thank you. You represent an important part of my life and accomplishments that made me proud.” No, I didn’t say it out loud because I felt a bit silly. But it allowed me to acknowledge how I felt about these inanimate objects and release them.
I had some of the same trouble with shoes.
My orange Chucks that I bought for the Tokyo Game Show. These cheapo little black flats from American Eagle Outfitters that I wore all over Paris and Versailles. It made me sad to let them go, but I feel so much lighter with just what I need and love.
I was really proud of myself, and moved onto books with enthusiasm. Ms. Kondo says to do all books at once, but honestly my living room floor isn’t large enough. So, I did one bookshelf. Yep, just one. And it took ALL DAMN DAY.
Why? Because I’m a unapologetic and life-long bookworm. I’ve purged many many books over the years, and I’ve read almost exclusively on Kindle since, well, the OG Kindle debuted in 2007. But the paper-and-ink volumes that I’ve held onto have meaning to me. They represent more than a job or a trip. They are my parallel selves, my possible me’s. The alternate Christa that learns Latin for instance, or writes profiles for the New Yorker (still my dream job!).
Or the me that becomes a professor of folklore and mythology. These books here? Joseph Campbell’s Masks of God series? They represent a future that never took place. But it was a dream that I–at the time a poor single mother attending college on a Pell Grant–was so excited about that I spent money I should have used for food or diapers on these four paperbacks. Joseph Campbell represented this dream and I held onto his complete works for far longer than I needed to. As you may have guessed, I didn’t even read most of them. I was determined to at the very least hang onto my Campbell. I sat on the floor surrounded by these books and sulked. I mourned that woman I never became. That career that didn’t happen. Because that’s really what I was afraid of letting go. In the end I hung onto books that can’t be replicated in e-ink: art books, image-heavy references like atlases, and books that are works of art unto themselves like these children’s books from 1907.
Anyway, at the end of a long painful dusty day I got a jam-packed, double-parked bookcase down to two simple shelves. I found interesting bookmarks. The funniest was a letter to me from the Friends of John Kerry and the saddest was a train ticket stub for a friend that killed himself.
Most importantly, of course, I offloaded a bunch of books that had become both physical and emotional baggage and turned it into cash at Half-Price Books.
this blog has been a place for me to collect my thoughts, sort out how I felt about what was happening to me, document the experience for the future, and sort of inadvertently–though in the end most importantly–help fellow cancer patients feel they weren’t alone.
I went from this:
Thank you for going along for the ride. Thank you for not turning away from the ugly realities of scars and chemo shits, peeling nipples and weakness, doubt, and flat-out terror. You kept me going, readers.
First, the end is not the end. The day after my final dose of radiation, I was back at the hospital for an echocardiogram. I’ve got Herceptin infusions every three weeks until May. I’ll start a five-year hormone therapy treatment mid-January, and in the interim I’ll have a bone-density test and another MRI on the “good” boob. I’ll have diagnostic-level mammograms for the next three years. I told my daughter all this isn’t fighting cancer because the cancer is gone. It’s more like treatment that says “…And STAY OUT!”
Because of all this ongoing…stuff, it’s been sort of hard for me to call this “the end.” Then I received a fancy bottle of champagne from my dear friend Sara. I mean, how could you NOT celebrate with this? So I decided to stick a pin in this moment and create a milestone. This is the end of one journey. I made it. And now it’s behind me.
There WILL be a celebration. I’m still figuring out the details. Is it selfish to throw yourself a I Kicked Cancer’s Ass party? Would anyone show up? I want to celebrate it being over of course, but I also want to celebrate the friends and family and even strangers who made it easier.
I haven’t been very good about updating during radiation. The fact is, for the first three weeks, everything was gravy. I got up in the morning, got the kid off to school, read the paper, did the crossword, played games on my phone for a while, then drove the hospital, got zapped, drove home. NBD.
Then, suddenly, after the 16th session, I noticed that I had a wound under my boob. Turns out that poor area–that hadn’t seen sunlight in decades–was the first to get burned. And I, unknowingly, was scratching it in my sleep. I’d actually scratched myself raw before I noticed it. That’s when daily wound care with Nurse Rad started.
After the underboob, the armpit went, and finally the nipple. I tell ya, you haven’t lived until you’ve had your nipple skin peel off. It’s gross to look at, and it’s REALLY painful. It’s Vicodin painful. Here’s some grody photos I took along the way. I tried not to make them too “booby.”
Anyway, I was pretty proud of myself for being so tough about radiation, but it turns out I just hadn’t really been tested yet. I was tired as fuck. I’d go to radiation, get my wounds soaked and salved and wrapped, then I’d go Christmas shopping for a while and finally come home and collapse. I often fell asleep before dinner.
My conclusion about radiation: It’s true what they say. Your skin will burn and then peel and you will be massively tired.
I have one session left. I’m smiling, and healing.
Here’s the thing: I posted those two magical words on Facebook over a week ago. And one of my friends commented “I can’t wait for the triumphant blog post.” So, I’ve been waiting to feel triumphant and have come to the conclusion that…it ain’t gonna happen.
See, I was apparently in complete remission as soon as my surgeon took out those little cancer chunks back in October. But no one told me. See, I’m not a doctor obviously, and this is my first–and hopefully only–cancer rodeo. But I’ve read a lot and I’m a very active patient. I pay attention and I follow up and I ask questions. So the key phrases the search engine in my brain was looking for when Dr. Superman called me with pathology results were: “No evidence of disease” or “remission.” I knew enough to understand that “cured” was off the table. That’s not a word you use with cancer.
So, I didn’t hear those words and I freaked out. I had a meeting with Buffy the Cancer Slayer and still, those words were missing. And in all subseqent meetings with every person on this superfun cancer “team.”
Did I ask “Am I in remission?” No, I guess I didn’t. I’m fairly certain I’ve asked “Is there any more cancer in me?” and have been told that we have no reason to think so. No evidence. No evidence of disease, right? Only no one strung those three words together.
So, the last time I was in for my Herceptin infusion I saw Dr. Captain America and I asked him this question:
“So…do I HAVE cancer or did I used to have cancer? Am I an ex-cancer person?”
He replies. “Ex. You’re in complete remission.”
Well, halle-fuckin-lujah! But could no one have SAID that like maybe two months ago?!
Words are important. And I’m thrilled to hear those magical words and to repeat them to all the friends and supporters who care about what happens to me. And I’ve tried really hard over the last week and half or so to shed the frustration and focus on the outcome. I don’t have cancer anymore! Hooray!!!!!
But, gosh, the last couple months of my life would have been different if Dr Supe had just said “remission” when he called me that day. I was ready to hear it. I was ready to celebrate. And I kinda feel like I got ripped off.
Lexy Cooper is a Community Manager at Xenon Corporation, maker of the Xenon24/7 videogame console and Xenonline gaming service. When a young woman’s nude body is discovered on the Xenon corporate campus, Lexy’s uncle, homicide detective Mike Malick, catches the case. As Malick investigates the crime, Lexy works the case from inside Xenon and discovers more about the seedy underbelly of the games industry than she ever wanted to know.
What do readers say?
“Filled with great characters, and a twisty-turney perfect murder mystery plot.”
“Witty, empowering, and deeper than you think.”
“Lexy is a character I find myself thinking about even weeks after finishing the novel.”
“A captivating thriller that introduces you to the inside of a big company that sells widely-loved entertainment products.”
“An awesome mix of humor, action, sex and more.”
I had my 13th radiation session today, but “dirty dozen” is much more clickable than “baker’s dozen,” don’t you think?
I met with Dr. Spiderman on Friday (the day after Thanksgiving) and he asked me, “So, how is radiation going? Is it better or worse than you thought it would be?” And I told him it’s much better. That I’m not really getting the fatigue I’d heard about, and the skin that’s being radiated looks exactly the same as the other, non-zapped side. Spidey, resplendent in a fuchsia button-down shirt, said, “Fine. Be that way.”
I joked back, “Are you sure the machine is plugged in?”
Just in the last couple of days have I started to feel tired. Like fall-asleep-on-the-couch-before-dinner tired. I don’t know if it’s the radiation, but it probably is. I haven’t been keeping track of my protein intake at all, and it’s supposed to be 60-90 grams per day. My appetite has been rather crappy, in fact. And speaking of crap…yep, it’s still cha-cha-cha all day err day. Not sure wtf I’m talking about? Click here. I’m not even sure I care all that much anymore. It’s just the way it is.
Hair update: It’s fuzzy and dark! It looks like hair!
Meanwhile, it’s the holiday season! I’m trying to be super excited, like when I was a kid, but I don’t think it’s possible as an adult. We had a wonderful Thanksgiving dinner at Snoqualmie Lodge, but driving back I was missing the old days when we (my mom, dad, brother and I) would go to my uncle’s house. We didn’t go home after the meal, but played board games and watched football and told stupid jokes until it was time for pie. Of course a couple sets of divorce and kids growing up changed all that, but each holiday I feel like something’s not quite right. Yes, some of the magic was recaptured when I had kids, and having a small person in the house who still completely believes in Santa and flying reindeer is about as good as it gets in Adult World. But I’m always unsatisfied on some level. Maybe everyone feels that way when they grow up?
This year, cancer and midlife crisis and my natural melancholy personality are combining to make…not Captain Planet, but something much worse. Let’s call it Captain Blah. And I feel guilty because there’s this expectation that I should be particularly hashtag blessed to have another Christmas with my family. And I AM, but…it’s just the same old shit. The same getting and spending. The same search for a ‘wow’ gift that the recipient will shove in a closet somewhere. I move a mountain of plastic garbage from the store to plastic bags to stockings and boxes (and eventually into a landfill). I organize the family into some kind of gathering and half-hearted gifts are exchanged and I get the feeling that no one really wants to be there; they’re just going through the motions because it’s what you do. Or they’re humoring me. Have I been forcing my desperate Christmas on my kids and parents all this time? I think I may have. The whole thing feels phony and wasteful, but I still try really REALLY hard to get into the twinkle lights and the music and the peppermint/pinetree holidaygasm. Does anyone over the age of 10 have magical Christmasses anymore? Are we all faking it? I’m not going to stop doing it, but I guess I’m just wondering if I’m alone in my Grinchdom.
Christmas isn’t the only thing I’ve been angsting over. Spending time in the city I grew up in (because that’s where I get treatment) has led me to drive past my old high school (remodeled and unrecognizable), the place I used to line up my quarters to play Donkey Kong (now a vitamin store), the parking lot I learned to drive in (now a –spit between my fingers to ward off the Evil Eye–Wal-Mart). I was even recently near my uncle’s old house where I had so many wonderful childhood holidays. It feels like a lost world. Like a place I can never return. I guess childhood is like that. But then as I was driving past my alma mater I remember that when I was going to school there I would often have the feeling that my life was just a dress rehearsal. Merely a preamble until my ‘real life’ began. I’m not sure when that feeling truly ended, but I know it lasted into my twenties.
And now here I am feeling as though my childhood was the real deal and I’m living some inferior reflection. Or something. And it’s difficult for me to engage in this shadow-world. It doesn’t feel quite real. I’m having trouble spotting the small joys because I’m drowning in the hate and violence (and I don’t even watch television news!)
Honestly? I think about death a lot. Every day. Why go back to school, or start a new career if I’m just gonna die? Why do anything for that matter? What, if anything, will matter once I’m gone? Please note: I have no reason to believe that I’m going to die in the near future. I mean, yeah, I have a better chance of dying from cancer in the next five years than people who haven’t had cancer do, but I have no indication of imminent demise.
Am I happy? No. But am I supposed to be? Whoever came up with the idea that the goal in life is happiness? Human history is a steaming pile of not-happy. What makes us so fucking special that we think food and shelter aren’t good enough? Why are we compelled to gather designer shoes and iGadgets? Why is our grandest ambition to be on fucking TV?
This post kinda went off the rails. Sorry for that. So yeah. Radiation’s going fine. I almost worked on my book today. I’ve been doing a lot of thinking and plotting, which is a good sign. And, lucky me, I have a new writing assistant: the naughtiest kitten in the world. Maybe this should be my new author photo?
I had my fifth dose of radiation today. For that, I win an x-ray! I mean a regular x-ray, not the kind that kills potential cancer cells. Apparently this happens every five treatments so they can make sure the positioning is still accurate, etc. Of all of my courses of treatment, radiation is the most mysterious to me. It’s also the…I want to say “scariest” but that’s too strong. It’s more anxiety than fear that I experience. It doesn’t hurt at all, but I think it’s the combination of being awake and alert (as opposed to being unconscious during surgery) and all alone (as opposed to being surrounded by other people during chemo) that sets my mind to pondering just what the hell is going on. Here’s what a typical radiation session looks like:
I arrive at the radiation oncology office and swipe my card to check in. I sit in the waiting room until a tech comes to get me. I’ve never waited longer than five minutes.
I undress from the waist up and put on a hospital gown so that it opens in the front.
The tech asks if I want a warm blanket. I always do. She gets one out of the warmer and follows me into the treatment room/x-ray den/lair of cancer slaying.
I confirm my name and birthdate on a large monitor and lay down on the narrow table. I shrug my arms out of the gown, and put my arms over my head, both hands on a handle behind me. The tech covers me with the warm blanket, leaving my right boob exposed.
A second tech puts a large rubber band around the toes of my shoes to prevent me from jiggling them and moving around.
Together, the techs use the thin cloths under my body to shift my position so that it lines up perfectly. Satisfied that I’m in the right spot, they leave the room.
The room is cold and white. There are faded nature photos on the wall to my left and overhead. The snow-covered mountain to the left is backlit, but I’ve never seen the blossom-covered branches on the ceiling lit up. Soft music is playing. Sometimes it’s jazz. Once it was a strange cover of Journey’s “Faithfully.” These are the moments I have weird thoughts about what if the world ended while I was in here. What if I emerged to find all the people gone? OR, what if Skynet comes online and makes the linear particle accelerator try to kill me? I’m not strapped down, but how the fuck would I know if the beam was toggled from ‘cure cancer’ to ‘terminate’?
The machine starts to hum and grind. It’s doing stuff, but I can’t see anything because it’s underneath me (did i mention the thing I’m lying on is 3 feet off the ground?). I only found out two sessions ago that they are radiating my lymph nodes from the front and back.
The machine is quiet again and I wait. I try not to think about itching my nose or coughing, or that I might need to pee. I hold still and attempt to focus on the snowy mountain. It usually just makes me cold.
The machine hums and clicks. It’s on the move. I’ve been told to keep my face turned to the left (“We don’t want to get your chin!” GET my chin? What now?) so I can’t see it, but the “Imaging Arm” is rising up over the horizon of the table like a cold mechanical dawn. It looms above me at high noon, inches from my face. It comes to rest on my left side, maybe half an inch from my elbow. It hums with menace. I can see the green light grid and my right breast reflected in it. I can clearly identify the slice of boob that’s about to get beamed. It’s sort of like having the Death Star up in my grill, and my tit is poor Alderaan.
The Death Star fires its weapon. The only way I know it’s doing its thing is the noise. It looks and feels like nothing, yet it took me until the fourth session to keep my eyes open.
The Death Star returns to high noon and rises up out of my way and the tech returns to the room to release me from my rubber bands. I get off the table and say “See you tomorrow.”
I put my clothes back on and leave. OR if it’s Friday I see first Nurse Rad and then Dr. Spiderman. They ask me if I have pain and take my temperature, pulse, and blood pressure.
So, as of today I’m one-sixth of the way done with radiation. I don’t see any changes to my skin yet. The nurse told me I probably wouldn’t feel the fatigue for a couple of weeks, and one of my friends who started radiation before me said it took three weeks for her to feel tired. But she didn’t have chemo, so I’m not sure that’s a fair comparison. Anyway, the last couple of days I’ve had moments of extreme fatigue. Not hours of tiredness, just these maybe ten or fifteen minute waves of energy depletion. Kinda like a burst of jet lag, or as if I inadvertently passed through some sort of soul-sucking field. A sinkhole of blah. Walking through a mist laced with NyQuil. It’s weird. I have a head cold too, so maybe it’s not even the radiation. Anyway, if it IS the radiation and just a taste of what’s to come, I’d better do all my Christmas shopping early this year!
So it’s been three months since my last chemo. My hair is growing back, and I bought a teeny bottle of expensive Bumble & Bumble shampoo that smells like chocolate. It only takes a tiny drop to lather up my whole head.
My guts are still fucked up. The radiation is actually kinda making me hungry and I’ve been pretty good about eating healthy-ish protein. On the other end, the cha-cha-cha is unrelenting. When I had my latest Herceptin infusion last week, on of the nurses said that is really unusual and talked to Dr. Captain America about it. He ordered a test for C. diff, which is a bacteria you can get after using antibiotics. Basically, antibiotics (I had surgery in October, remember) can kill off your good gut flora, and Clostridium difficile moves in. So…yeah. I had to take this plastic tray into the bathroom and fit it on the toilet, attempt to get liquid poo (but not urine!) into it, and then pour it into a sample cup and deliver it to the lab. There was a lot of muttering, cursing, gagging, and then I emerged from the bathroom with a small jar of shitquid (that’s liquid shit) that I’d shrouded with a paper towel. I take it to the lab. They don’t want it because it’s got no sticker. Back to the infusion suite for a sticker, then the lab to drop off the offering.
I get a message from Dr. Cap that night. Negative for C. diff, but it’s okay to take up to EIGHT Imodium each day. Awesome. Also, he wrote, my magnesium is still hella low, so keep taking the supplement. Grr.
I feel guilty that I still feel weak and shitty. I can see the end of the tunnel (I’ll be done with the major cancer treatments by the end of the year), but there’s no light there. I will need to begin my life again, and I’m very fuzzy on what that looks like. My brother asked me a few days ago, “What do you want to be when you grow up?” And though I’ve written about this before, months later I’m even less certain of anything. When you focus so narrowly on just getting through something, arriving at the end is scary. I feel lost, not triumphant.