Trixieland

words about words

10 things I got wrong about breast cancer


So here I am, a handful of days after my lumpectomy, still waiting for the pathology report which will presumably tell us either “We got it all” or “There’s still cancer in there.” And I’ve been thinking about the past few months and the assumptions I made and the stuff I got wrong. So I thought I’d take a minute (while I wait for the fucking phone to ring) and have a good laugh at how naive I was back in February.

So naive!

So naive!

  1. I didn’t know shit about breast cancer. I knew a couple people that had been through it, but it really didn’t touch my life. The first was a friend of my dad’s ex-girlfriend. A psychologist I went to one time who told me I was in the midst of a severe clinical depression and sent me off to the worst physician I have ever encountered. Like she should probably be burnt at the stake. Anyway, this woman later got breast cancer and I saw her once, sitting on my dad’s ex’s front steps, completely bald. I was 23 or 24 and a new mom completely wrapped up in my own stuff. I didn’t say anything about her health because I was young and stupid and didn’t know what to say. And I probably harbored some residual ill-will for sending me to that terrible doctor. The next thing I knew my dad’s ex appeared at my house crying because her friend was dead and the only thing she knew would make her feel better was to see and cuddle my baby son.  The second person was a contractor who worked for me at Xbox. I’m sure I told her I was sorry for what was happening to her, but I didn’t ask a lot of questions. I just wanted her to work on the stupid Xbox instruction manual so I could do the more fun stuff. When she lost her hair I gave her a really soft baby blue hat and scarf (or it could have been gloves) for Christmas. It was easier than saying something to her. Eventually her contract ended and I never saw her again. I spent a lot of time cleaning up the mistakes she’d made on the manuals and cursed her inside my head for causing me to do everything all over again. Now of course, I recognize that I was a complete selfish asshole. I think about that poor woman showing up to work every day and slogging through the mind-numbing work of getting all those fuck-tons of strings of localized copy and having to get them in the right places…all while suffering the side effects of chemo. She never complained to me. She always showed up. I didn’t give it a single thought, but she must have arranged all of her medical care around my schedule. I hope she’s okay.Mommy and Allie photo booth
  2. When I first announced that I had breast cancer I got many messages from friends and acquaintances saying how sorry they were and offering to help in some way. My basic response was this: Thanks! It’s no big deal, just stage two. I might even get some perky new boobs! I kinda want to barf remembering how nonchalant I was. How I understood exactly nothing. My intent, I’m sure was to comfort people freaked out and worried about me, but in retrospect I was also in some big, fat denial.
  3. I thought I’d get perky new boobs. This did not pan out for me. I’m lucky enough to have kept my old reliable boobs which are neither new nor perky anymore. But what I discovered is that the perky new boobs thing is sort of bullshit. I mean, yes, plenty of people get reconstruction, but it’s not a simple matter of lopping off the cancery tits and sticking on some Baywatch silicone implants. Not at all. There’s a bunch of unpleasant shit involved and multiple procedures. They have to leave a flap of skin for instance. And insert “expanders.” So over months they fill these pockets with saline and then a little more then even more so that your skin stretches and finally they can take out the expanders and shove in the implants in yet another surgery. Then there’s the matter of the nipples. They can try to “conserve” your nipples, but it seems that about half the time you lose all sensation anyway. So they can create little nippley protrusions and then tattoo a nipplish color onto your skin. And maybe someone’s somewhere look good, but most of the pictures I’ve seen are lumpy and scarred and not anything you’d want to flash on Bourbon Street.
  4. I’m mildly horrified by my F.A.Q. in my first cancer blog post. Specifically the “Is this a breast cancer blog now?” bit. I’m not my cancer, I wrote. But I was so, so wrong. I had visions of just continuing to live my life with occasional visits to the hospital for treatment. What a fucking joke. Cancer CONSUMED my life. Every waking minute I was dealing with it in some way. I spent a LOT of time at the doctor’s office or the infusion suite or at the pharmacy or on the phone making appointments or looking for results or chasing down an insurance issue. Before we knew the extent and nature of my cancer I spent all my time reading books, surfing the internet, poring through forums looking for information. Once in treatment I spent all my time being fucking miserable. Searching for something I could eat. Or a comfortable position to sleep in. Or a hat to disguise my bald pate. Not even in sleep did I escape. Thanks to the menopause brought on by chemo (called “chemopause”) I woke up several times a night with hot flashes followed by chills. I haven’t done a damn thing these past few months besides have cancer.
  5. I thought at some point I’d have a prognosis. Like, someone, one of my doctors, would give me “my chances.” I.e. my newly-calculated life expectancy. But no one has. The only thing close I’ve gotten is when my surgeon told me “If we go five years without a recurrence than we’ll have champagne.” Does that mean I’ll be lucky to last five years? Does it mean that the danger zone is five years and if I make it past that I’m in the clear? I have no idea. And I don’t think they do either. I could visit 30 different web sites and get 30 different statistics. It turns out the stats and tracking for breast cancer totally suck. Here’s the missing bit: No one is tracking metastasized breast cancer (when the cancer spreads to other organs). I mean, maybe the NSA knows how many of us “early stagers” go on to get the death sentence, but they’re not saying. Too busy looking at dick pics, most likely. I read a breast cancer article recently where the author said something that stuck with me. To paraphrase: I won’t know for sure that I won’t die from breast cancer until something else kills me.
  6. I thought one day this cancer shit would be over. But it won’t be. Because I will always be wondering if it’s coming back. And here’s the thing: it’s not like they scan your whole body once a year for the rest of your life. They’re not going to check my brain, bones, liver and lungs unless I start having symptoms. BUT, it doesn’t matter if they find metastasized cancer “early” because you’re going to die from it. You could hang on for a decade, getting body parts removed and trying different meds until they’ve all stopped working. But the average length of survival is about 21 months. Anyway, would you want to live ten years of chemo and weakness and feeling like shit and being miserable. Right now I don’t think I would, but I guess I won’t know unless I’m tested. And I hope I won’t be, but I also know myself well enough to grok that I’m never going to be able to put this out of my mind and live my life the way I used to. I told my friend Amber that I thought that maybe getting and staying drunk or developing a Valium “issue” might be the only way for me not to spend every second of the rest of my life worrying. I’m not alone in this. Studies are finding that cancer survivors often have PTSD. I swear to you that I would give up twenty IQ points in exchange for some peace of mind.
  7. My first post-chemo report makes me laugh. “This isn’t so bad,” I wrote. “Kinda like mild morning sickness.” Excuse me while I have a chuckle. Or the kind of maniacal laughter that turns into sobbing. As Bugs Bunny said, “What a maroon!” What I didn’t understand was that the side effects were cumulative. Durr.
  8. I thought I would bounce back from this and be who I used to be. I suppose I still could, but…I don’t think so. My body has changed a lot. The scars from two surgeries? I’m stuck with those. The nerve damage to my finger and toe-tips? It might go away, but it might not. My hair will most likely grow back, but who knows what it will be like? Many times it comes back courser and curlier. This chemopause business. Is it going to go away, or will it just segue into legit menopause? No one knows. And guess what, girls? No one talks about menopause. No one tells you. I’m closer to 50 than 40 and all I know about menopause is the cliche about standing in front of the open freezer during a hot flash. That’s it. I don’t mind not having periods, because come on, nobody likes that shit. The hot flashes keep me up at night but I’d say they’re annoying. Not painful. What I didn’t know about is the climate change. Basically what once was a verdant rainforest becomes Death Valley. “Down there” goes from this Georgia O’Keefe painting Red-Canna to this onecow skull Okeefe . You know what the remedy is for this? Estrogen. The same shit that my flavor of cancer feeds on. So…what? I get a sandpaper crotch for the rest of my life? Or chemopause ends and I get a few years of regular junk before the whole thing starts over? No one can tell me. No one knows.
  9. I thought I could keep writing. Nope. I haven’t touched my Lexy short story since July 7, and I halted work on Mike Malick #2 on June 16. The only thing I’ve written is this blog. And the only thing I’ve written about is cancer. (see #4). I feel guilty about this. Before this, I wrote two books a year. Now I write selfish bullshit on a blog. It’s not that I can’t work–just I don’t want to. I’m not excited about either of those projects right now. Nor either of the side projects (a stripper romance and a YA series) that I was stoked about six months ago. I wonder if I should just skip ahead and start writing Lexy 5. But… oh who knows? I just don’t feel like writing books and that makes me worry that I’ve broken my juju and I’m back where I was when I didn’t write fiction for 20 years. I don’t have another 20 years to waste. Or do I? No one knows!!!
  10. I thought that my friends and family, after a first rush of good will and cavalcade of gifts I jokingly refer to as “Cancermas” would dry up after a month or two. It has not. People continue to shower me with love, presents, dinners, cards, well-wishes and prayers.

P.S. Doctor still hasn’t called with pathology results.

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2 thoughts on “10 things I got wrong about breast cancer

  1. I so hear you!! I’m a nurse. I thought I knew. But I knew nothing from the patient side and it is so totally different. My thoughts revolved around me and chemo and what days I would feel ok. Then it would change because my blood counts were low and treatment would be delayed til they were adequate. I could nevertheless plan ahead for anything.

    In the midst I had a new grand baby and all I could think was would I be here long enough for him to know me. The other 2….well, yes, they love their grandma but they are all still so young. How do moms or dads do it? I can’t imagine that part

    Friends and family have been amazing. I’ve turned down so much help not because I’m trying to be tough but because there is only so much help I need in a day. But if someone wants some ideas, meals…just call to say I’m bringing you dinner tonight. That is the one thing I could gave used.

    I had my last treatment last week. Now waiting for the scan to tell me if I’m clear. Then it’ll be the waiting game and wondering if it will return. I just talked to a friend I grew up with. She is now 25 years clear. That gives me hope.

    Now to figure out how to get back to normal stuff. Normal feels so much different now

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