Yesterday I had surgery to remove the medi-port that was installed a year ago ahead of chemo. Since then I’ve had six rounds of chemo, multiple echocardiograms, 11 infusions of Herceptin, a lumpectomy and lymphnode takey-outy, 30 sessions of radiation, a bone density test, I don’t remember how many MRIs and blood tests and zillions of pills. But with the removal of the medi-port, I’m officially done. My surgeon Dr Superman says it’s his favorite surgery because it’s symbolic. I won’t need any more chemo because I’m going to be okay.
So, I wanted to give an update from the winner’s circle. I feel like the “finish line” was my last dose of Herceptin and this is just the clean-up, the victory lap.
My hair is growing back thick and curly (just like it was before it all came out). Unfortunately with curly hair, it tends to get WIDE before it gets long. So I’m sporting a look that’s a little bit Will Ferrell, a bit Bozo, and a helping of Madam Hooch.
My eyebrows are filling in a little bit, but they still need an assist from an eyebrow pencil, which I had never in my life needed to use being from the Brooke Shields brow club.
My eyelashes are another story. So pathetic. I religiously applied RevitaLash every night and little stubs began to grow…but SO slowly. The few lashes that hadn’t fallen out in the last round of chemo were thin and twisted little bastards. Attempts at mascara just emphasized the sorry situation and made it look as though spiders had crawled onto my eyelids to perish. SO, I got eyelash extensions. I really did. I lay down for two hours (and 200 dollars) while a lady used surgical glue to attach fake individual lashes to my spider legs and lash stubs. And guess what? I LOVE THEM. Worth every damn penny because I feel like a girl again. A healthy, non-cancery female woman. So there. Is it petty and vain? You bet your ass, and I’m going back to do it again in two weeks.
My medication is down to a once-daily aromatase inhibitor. Remember how I said there were no side-effects? Well, once enough built up in my system, I did start to experience some of the common ones, specifically joint pain and this numbness and stiffness in my hands. It’s annoying. It’s as if all of a sudden my body is eighty years old. I move like your grandma when she gets up from the couch to get you another cookie. A lot of pausing and strained smiles. It sucks but it’s better than the cancer coming back, am I right, folks?
Speaking of the potential return of He Who Shall Not Be Named…
…I have calmed down so much and am starting to acclimate myself to being cancer-free. It took a lot longer than I’d have thought, but I’m pleased to report I have come down from the ledge of constant fear and worry. It just took time. (and probably the Paxil helped).
So what else is new? We moved into a big house with a ginormous yard. My youngest is going to a new school and already has a new best friend and play dates and birthday party invitations. Her birthday is next month and for the first time in her life we’re hosting the party at our home in our back yard with a rented bouncy house.
Gunny is going to college full time working on a business degree and he also got his realtor license and is working hard to get things going on that front.
My older daughter is thrilled to have her own room again (she was sharing with her sister in the old apartment) and she’s raising some baby chicks named Bellatrix, Luna, Minerva and Tonks.
Me? I’m looking for a job. My hesitant stabs at healthcare type deals didn’t really amount to much. I have zero experience so I can’t blame them. I find myself applying for the kind of jobs I did before and sort of falling into some old habits that I’d hoped to leave behind. Petty concerns like a long commute or money stuff. My former field of work is small and incestuous and very competitive. I’m disheartened at how easy it was to forget about my priorities and my new-found peace of mind. So my answer is this: I’m going to focus on the future that I’ve now accepted that I’ll have. I’ll get a job, certainly, and do it to the best of my ability, but I am also going to get my degree in something that will fulfill me in the long run. I want to be a counselor–probably an end-of-life/hospice counselor. I will need a lot of school, but the years are going to go by regardless and at the end I can either have something to show for it or not. I choose school. Not finishing my BA is my only regret in life and it’s something I can actually fix! So I’m doing it!
As far as my personal life and psyche? I feel so freaking lucky. Walking my kid to school on a sunny day is just idyllic. Weeding the yard makes me inexplicably happy. We run through the sprinkler and roast marshmallows in the fire pit and make daisy chain crowns.I sleep so well in this house it feels like we were drawn to this place for a reason. I’m…HAPPY. As Allison summed it up this morning on the way to school:
“Ahhhh. I love life!”
And so, I don’t think I’m going to write about cancer any more unless there is some sort of update. I’m going to take these blog posts and flesh them out and fill in the blanks and publish them as a book. Maybe people will want to read it and maybe they won’t. But it’s something I feel strongly that I need to do.
If you were here for the cancer, I appreciate your interest, love and support. We now return to our regularly scheduled blog posts about books and writing and kids and work and maybe some chickens and gardening.
A year ago today I got a life-changing phone call. I had infiltrating ductal carcinoma: breast cancer. It’s sort of a sad anniversary. I feel in a way as if I lost a year of my life (along with my hair, a chunk of boob, my fertility, and a few lymph nodes). But at the same time I gained so much knowledge. I know now how much I am loved. I know I can handle anything. I know I’m a survivor. I know now precisely what is important to me: My family. My health. My peace of mind. And what’s not: Stuff. Appearance. Impressing strangers. Being “cool.”
The parameters of “success” have changed drastically for me. If I’ve got my family, my health, and peace of mind, I’m good. No matter what I’m wearing, what I’m driving, what’s in my bank account or on my business card.
So thank you, cancer, for the clarity.
To update on medical matters:
This still counts as “medical,” but I think it’s pretty important. I have a history of depression, starting in college and off and on throughout my twenties. I sort of figured (or at least convinced myself) I had “grown out of it.” But cancer kinda threw me for a loop. A month ago, I admitted to Dr. Cap that I thought I might be depressed again. That I expected when treatment was over that I would spring up ready to kick ass and take names. “But I still feel broken,” I said, as a tear rolled down my cheek. (Poor Dr. Cap, he’s the only one I ever cry in front of!) He asked me if I felt like hurting myself. “Not today,” I admitted. He told me that depression with cancer is not unusual at all and prescribed Paxil and put in an urgent referral for their shrink. The shrink’s office called two days later to tell me that they don’t take my insurance. [Just want to say here that that’s basically the worst thing you can do to a person who’s depressed: tell them they aren’t “right” and give them work to do (finding a new shrink)]. I still haven’t found a shrink, but…
I’ve been on antidepressants for a month and I feel like I’ve been living in a cave and finally found my way out into the sunlight. I’ve begun actively looking for a new job, I socialized with old friends, I’ve been going to the gym five days a week, and my husband and I just signed the lease for a house on a half-acre after living in an apartment for over a decade. Did I mention science is awesome?
Anyway, I’m feeling like a billion bucks. Like so great I think I’m grateful to Turdy the Tumor, because I can’t help thinking that that little cancery fucker led me here, to this good place with my family, my health, and peace of mind.
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!
Click here to learn more and donate! Right here!!
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.
Which I spent on more books.
It is done.
What began with a lump almost one year ago is finally over.
From the diagnosis
Through six rounds of chemotherapy
Surgery on my breast and lymphnodes
and 30 doses of radiation,
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.
Hooray, right? When did this happen?! Oh wow!
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.
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