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Archive for the tag “chemopause”

Pathology, surprises, and what’s next

Since my last post I have calmed down a bit and also found out more information. The first thing I did was go to Dr. Supe’s office and pick up my pathology report. After much Googling, consultation with my billions of breast cancer books, and knowledge I’ve sucked up over the past six months, I had some answers. Then I had a post-op appointment with Buffy the Cancer Slayer and learned more.

Pathology Report post-surgery

Okay, so the good news is Turdy is dead. I will place no flowers on that fucker’s grave. But, I am grateful to him for being big and lumpy and close to the surface. If I hadn’t felt his gnarly ass in my boob, this cancer would probably still be undetected, spreading its shitty, sneaky doom throughout my body.

RIP Turdy

Let’s go through my list of Stuff I Don’t Know and update:

What I don't know

  1. Well, I guess that was rhetorical.
  2. Um…probably not. Here’s why: The nodes that drain from my breast to my armpit were discovered using the radioactive tracer. Dr. Supe examined three of them (the ones that made the Geiger counter click) and took out two. one showed signs that cancer had been there and been killed off by chemo. The other had some stubborn cancer still in it. (probably because the malignant node was so frickin large. Twice the size of Turdy.) So I guess the rest of the lymph nodes looked okay?
  3. A total of 7 grams. 4 for the former Turdy site and 3 for the little scoop where the DCIS was. Here’s what 7 grams looks like: 7 grams of weed
  4. Nope. Nothing left!
  5. We have to assume not, as nothing showed up in mammogram, ultrasound, MRI, or PET scan. My guess is that Turdy’s fat ass obscured the tiny 1mm DCIS. Could there be more? Sure. But we don’t have any evidence that there is.
  6. Buffy says that additional surgery wouldn’t be more lumpectomy or a mastectomy. The concerning area is my armpit, so if there’s more cutting, it would be to remove more lymph nodes. Or maybe all of them in my armpit. There isn’t consensus on that yet…
  7. Well. Because there aren’t many straight answers. Will the cancer come back? No one knows. You can look at stats and probability all day and night but you just can’t predict recurrence. It’ll come back or it won’t. And then you’ll know.

Here are some more things I’ve learned and realized in the last week:

  • When Dr. Moviestar called in March to tell me my biopsy was bad news and that yes, it was cancer, he told me it was Stage 2. Of course that was before a zillion more tests and scans. What no one told me (and I guess I didn’t ask, though I did speculate) was that once Turdy Jr. was discovered in my lymph node, my breast cancer was Stage 3. Which is scarier than Stage 2 and maybe it’s better I didn’t know until I flat-out asked Buffy. Still. Yikes! The survival rate takes a pretty large dip between Stage 2 and Stage 3. From 93% to 72%.
  • I think my terrible reaction to Dr. Supe’s phone call about the path report is due to unrealistic expectations. I expected to hear something along the lines of “you are cancer-free” or “there’s no evidence of disease.” Which equals remission. (Cancer is never “cured.” Sort of like addiction; substitute “remission” for “recovery.”) Why did I think that? Partially I think because my doctors never discussed possible outcomes with me. Never gave me a range of what could be the result. Did I ask? Maybe not. What I did do, a few months ago, was watch Season 4 of Parenthood in which Kristina Braverman gets breast cancer, goes through treatment and SPOILER comes out the other side healthy. parenthood-monica-potter-peter-krauseShe and her husband Adam sit in her doctor’s office after surgery and chemo and he tells her “You are cancer-free.” (Or that’s what I remember happening). So, to me, that’s how the narrative goes. Prince Charming rides up, kisses your dead lips and BAZINGA! Princess Life! Naive? Yes indeed.
  • I asked Buffy if one more round of chemo would have knocked out the remnants of Turdy Jr in my lymph node. She told me that I’d had the most chemo I could have. So I felt relieved that I hadn’t taken Dr. Cap up on his reluctant offer to lower my dose. And also felt a little bit badass. Like I took all there was to take. My chemo was dialed up ALL THE WAY and I got through it. Go me.
  • What I kept focusing on was the presence of cancer. A tiny DCIS in my boob and some extra-stubborn cancer in my lymph node. Forgetting the fact that those two bad boys were cut out of my body. Not inside it any more. Gone.

So here’s what’s next. Tomorrow, all my doctors (Supe, Cap, Buffy, the radiation oncologist, and whoever else) will review the pathology in a “multi-disciplinary breast conference” and discuss what they should do with me. Yes, it’s every woman’s nightmare: people who have seen me naked will be talking about me behind my back. They’ll discuss the armpit surgery and if they think it would make me healthier/safer/less likely to have a recurrence than just going ahead with radiation (which starts soon), continuing Herceptin until May, and hormone therapy (which starts after radiation ends and lasts five years). One of those Super Friends is supposed to call me after the meeting and let me know what went down.

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To be honest, I am more leery of the armpit thing than a mastectomy. The more lymph nodes you take out, the greater the risk of lymphedema, which apparently sucks big donkey balls, and they can’t do much about it. But, it’s not like I get to choose. My armpit is being a dick, not my boob.

As for the surgery recovery, Buffy snipped my little stitches and even I have to admit I am healing like Wolverine.

FullSizeRender (9)I still can’t immerse my boob in water for two more weeks and she warned me not to lift weights (ROFL). The grody part of my fingernails is growing out and should be gone in another month or two.

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My hair…well, let’s just say it’s slow going. I still haven’t had to shave my legs.

The chemopause is worse than ever. The hot flashes are pretty fucking terrible. Buffy says that given my current age and the age my mom was when she started menopausing, I probably won’t come out of chemopause, but will just slide right into legit-old-lady-menopause. So, yeah. It’s not like I was going to have more kids, but this is kind of a tough one. However! She told me that exercise and acupuncture can help with hot flashes, and if those don’t work she or Dr Cap can prescribe something for me.

I still have a terrible battery-acid pine cone in my belly. Well, that’s what it feels like. I chalked this up to chemo nausea long ago, but the chemo’s been over for two months today (!) and the pine cone is still there feeling prickly and gross. I think it’s a ball of anxiety and my next step (well, one of my steps in there amongst radiation and Herceptin infusions) will be to maybe talk to a shrink about that shit.

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Meanwhile! I have lots more energy than I used to. I changed the sheets on the bed without getting winded and I’m doing almost all the stuff I did before. I can eat food and smells don’t bother me and I’m excited about stuff. Like the Star Wars trailer, and my new kitten Loki, and the Halloween party I’m going to this weekend.

Loki Day One

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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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