Après cancer is a series of milestones. One year since my first chemo! One year since my last chemo! I have come to the conclusion that my cancer-free status dates from my lumpectomy, when Doctor Superman removed those bad lymph nodes and the clip to show where Turdy once lay and that surprise little in situ fucker. That surgery was October 8th.
As my cancer-free anniversary approached I noticed a red rash on the “bad” boob. It itched and it seemed to emit heat. I didn’t think much of it until a week later when it was worse.
Then I started to do survivor math: bad boob + persistent rash + one year must of course equal Inflammatory Breast Cancer. Let me tell you something about IBC: it’s a nasty fucker. It’s very rare, but it’s deadly as shit. By the time you notice a weirdness on your boob, you’re probably stage IV. Here’s where it gets really messed up: because it’s very rare, it’s almost always mistaken for something else. It’s sort of like paranoia. If you think you have it, you’re probably just paranoid.
I email my oncologist and fully admit I’m probably nuts but my boob and rash and la la la. He writes back right away (bless that man) and says while it’s unlikely to be IBF, come on in and have the nurse practitioner take a look. So, I go in and she looks and she says it’s probably some sort of dermatitis and she doesn’t think there’s anything suspicious about it. She prescribes some cream, and almost as an afterthought says: “Well, because it’s the right breast let’s give you a round of antibiotics too.” And I was supposed to be relieved. But I wasn’t. Because that’s how every single IBF story goes.
1. Weirdness on boob.
2. Doctor prescribes cream.
3. When that doesn’t work, Doctor prescribes antibiotics.
4. When that doesn’t work, Doctor orders a skin biopsy
5. Patient is diagnosed with IBF and the cancer has had six or eight extra weeks to metastasize.
I went home convinced I had IBF and just had to go through the motions of eliminating non-cancer to appease my doctor. I creamed and antibiotic’d and the rash got worse. It spread across my boob and then it got little pustules.
And then it got better.
I’ve formed a little group of Facebook friends that are breast cancer survivors. They range from a woman who had stage 0 and avoided chemo to one who has been stage IV since her triple-negative breast cancer came back after she’d almost hit 3 years in remission. I messaged them about my rash and they all told me it was super unlikely to be anything; but to have it checked out for my peace of mind.
I reported back to the group that I’d been sent home with a couple prescriptions but that I didn’t feel confident.
“Is my body telling me that something is really wrong, or am I just damaged?” I asked.
“Damaged,” they replied to a woman.
“Damaged,” they wrote.
“Even after four years every headache is a brain tumor, every ache is metastasis.”
So, I guess I’m a hypochondriac now?
Then the election happened and I was so stunned, heartbroken and demoralized that I stopped taking my fat pills, which is what I call my aromatase inhibitors. The first drug I was on, Letrozole, made my joints hurt so much it was difficult to stand up from a sitting position, and climbing the stairs to tuck my daughter into bed was a painful and laborious undertaking.
After six months of that I switched to Exemestane and my knees felt better and my hot flashes weren’t as severe or frequent. But I blew UP. Without changing my diet or activity level at all I gained 20 pounds in three months. My oncologist tells me that this hormone therapy is even more important than chemo (especially when you consider my lymph nodes were involved and I was HER2 positive and my Ki-67 was high….yikes!) and that while a year ago the protocol was to stay on it for five years, now it’s TEN.
So I cut sugar out of my diet–which was tragic because ever since chemo I’ve craved sugar like a child. Still, nothing. I’d lost 20 pounds from chemo, then gained 10 back when my appetite returned. And then 20 more pounds with the hormone therapy. So now I’m 10 pounds fatter than I was before I got cancer. I weigh more than I did nine months pregnant. This weight gain and inability to lose weight is a known side effect and there doesn’t appear to be any treatment. Even the patients who only eat organic shit and exercise every day get and can’t lose the belly. Besides feeling like a fucking monster, guess what’s a risk factor for a cancer recurrence? Yep, obesity.
And I look back at the videos of that woman with long dark hair and little skirts with a gleam in her eye having fun and I don’t even see a shadow of myself in her anymore.
And lordy, back then the whole world and their uncle Bubba just had to tell me how fat and ugly I was. Some of them said I looked like a bulldog. More than a few compared me to Shrek. Not even Fiona—Shrek. And now I see there was nothing wrong with her. She looked pretty okay for a person in her late thirties who had borne two babies.
Now I actually do look like Shrek. It’s not just the weight, it’s what chemo did to my body and my skin and my eyesight. It’s like in a matter of months I went from rather dumpy middle-aged mom to an ancient ogre with wrinkled age-spotted skin and that sick crepe-neck. My physical ailments are more similar to those of my mother’s generation than my peers. I look like an old lady and feel like one too.
Ergo, I stopped taking the damn pills. For all the vain and inglorious reasons noted above and also because I’m not all that invested in longevity if it’s gonna be in a world where Donald fucking Trump is in charge of shit.
So, going cold turkey on my fat pills may or may not have exacerbated the stress and despair I’d been experienced for two post-election weeks when, after 4 or 5 days of dizziness, shortness of breath and a tight feeling around my chest I went to the ER. Partially because I was too embarrassed by my IBF freakout to talk to my doctor. I just wanted them to whip out a stethoscope and listen to my heart and tell me I was fine. But ER’s don’t play that.
Here’s a tip. If you ever want to go to the front of the line at the ER, tell them you have chest pains. The next thing I know, I’m in a gown, in a bed, getting an EKG, blood test, urine test, a chest x-ray and two doses of a delightful treat called Dilaudid.
Everything was perfectly fine with my heart. There are white blood cells in my pee, but I don’t have a fever so who the fuck knows.But of course you must know by know I started Googling bladder cancer.
Contributing to my stress is that I’ve been searching diligently for 10 months and haven’t found a full time job. I haven’t even gotten a response for jobs I could do in my sleep. I even threw my hat in the ring for a job I basically created at a former employer…and didn’t make it past the phone screen. That felt almost exactly how I imagine a knife in the heart feels.
Hire me. Please.
I haven’t gotten to a face-to-face interview for any permanent job anywhere. For ten months. So I’ve been doing freelance stuff. But between hustling for work and begging clients to pay their invoices it’s pretty much a big fat ball of stress.
At one point I got superstitious. Like, I’ve been a pretty good person for the past several years, but before that I hurt some people. Not much in the way of real malice, but thoughtless comments, loose lips, taking a joke too far, general bitchiness. So, I went on what I called my “apology tour.” I apologized to former coworkers, online acquaintances, old boyfriends, you name it. For big stuff and for stuff so petty the victim had forgotten about it. It felt good. I felt unburdened. I was like “OKAY! NOW we’re getting somewhere!” And then suddenly a friend I hadn’t talked to in a long time hooked me up with a nice contract gig writing for a large company. I actually had an interview! All systems go! But then these things happened in this order:
The budget for my services wasn’t approved – sad face
They came up with a test-case to prove my worth – happy face!
They want me for three months a 40/hrs week! – happy face!
Four weeks pass and the contract isn’t signed. – sad face
Company re-org! They want me to contract 3 months then change to full time permanent! – ecstatic face!
Two weeks of silence – sad face
There’s no budget AGAIN and they can offer me 30 hours a MONTH – what face do I have now? Disappointed face? Jerked around face? Glad to have fucking scraps of work face?
Now, don’t get me wrong, it’s not 100% misery and self-pity up in here. The chickens are laying fresh eggs. We spent a fun weekend with friends in the mountains. My father finally got his ailments properly diagnosed, and I met Bruce Springsteen!
But all in all, I sort of miss cancer right now. It was really liberating to have ONE job: survive.
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:
I have three Herceptin infusions left, and then I’m done! I’m assuming I can get my port taken out, and that will be a huge deal for me. Already planning a new tattoo to cover the scar.
I have had two injections of the estrogen-blocker thus far without any side effects. They were one-month doses. Today, I think Dr. Cap will bump me up to a three-month dose.
The daily pill I take to keep estrogen-hungry cancer from coming back is tiny and without side effects. So that’s awesome!
I’m supposed to have my annual mammogram this month, but I’m hoping since I just had a breast MRI in January (completely clear, btw!) I can get away with skipping it. Probably won’t fly, but worth a shot.
My hair has come back as thick as before and is starting to curl. My husband loves my short hair and thinks I should keep it this way. I’m more curious to see what happens as it grows, but I’m not ruling out cutting it later.
My eyebrows and eyelashes are starting to fill in. I never lost them completely, but they were thin and scraggly AF.
I’m feeling normal and healthy. Not sick or weak at all. This seems like a miracle to me. Science is fucking awesome.
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!
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.
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.