Trixieland

words about words

Fear – The Real F-Bomb

Normally, I would wait until I know more before making this post. But, this–the waiting, the not-knowing–is a large portion of this cancer dance. So, today, I went to the radiologist to do ultrasound-guided biopsies of stuff that showed up on my breast MRI a couple weeks ago.lymph-nodes1

No biggie, I thought. I’ve done this before. I know what to expect. And I even had a prediction (left boob was a false alarm and lymph node in right armpit would probably be cancery). Here’s what I didn’t expect: it wasn’t one node they were looking at it was, according to two different techs “a handful” or “three or four.” Can you fucking count? I realize that techs usually can’t tell you anything because they aren’t supposed to make a diagnosis, but JEEZ. Is it five? Is it three?

Okay, so they’re looking at more than one node. I can deal with that. But here’s where it got freaky. One of the lymph nodes under my arm is GINORMOUS. It’s 4.4 cm. That is almost twice the size of Turdy the Tumor. Or at least his size when we did this ultrasound jazz back in early March.

Son of Turdy

Son of Turdy

Dr Movie Star comes in to do the biopsy. We talked about Burt Reynolds and that cheesy killer bees movie that culminated in the Super Dome.

Was he going to stick a needle in all the suspicious nodes?
No, just the big one.
If the biopsy comes back cancerous, is it a tumor in my lymph node?
No, it would be a malignant lymph node.
Since this blob is bigger than the one in my boob is it possible that the cancer started there and moved to my boob?
It’s not impossible, but it’s not probable. It usually starts in the breast and moves to the lymph nodes.

Okay, so he did the biopsy and I got to look at the little wormy core samples that he’ll send to the pathologist. They don’t look evil.

My left boob thing? Dr. Movie Star couldn’t find it. Hooray, said I. Well, that means we’ll need to do an MRI-guided biopsy instead. Boo, said I. He also mentions that if the biopsy comes back bad (and I am fairly confident that is the case, because it’s extremely common for cancer to spread to nearby nodes) they will probably do a PET scan or CT scan to see if cancer is anywhere else in my body. This is when I saw the Eternal Footman hold my coat and snicker. And in short, I was afraid.Prufrock

So yeah. I know I’m supposed to be all positive happy snappy blah blah bullshit, (and Oh! You should have seen my performance today. I was in full-on Trixie Mode. Cracking jokes, making small talk, calling everyone by name and telling Dr. Movie Star his techs should all get raises. Aren’t I a firecracker? Don’t I just have the BEST attitude, bless my little heart.)

Meanwhile, all I can think about is worst case scenarios. The cancer is everywhere. Every fucking where. I’m going to die. They’re going to do a bunch of scans and they’ll change my stage from 2A to 4, which as Dr. Boobcutter put it, is “game over.”

Bright side, bright side, bright side.

1. I’m starting chemo in six days. It’s going to work on killing cancer wherever it may be.
2. I don’t have any symptoms (but what about those headaches? Or how my back always hurts? Shut UP.)
3. I have an awesome medical team that is proactive and sympathetic.
4. I have health insurance. Yes, they may be slow, but Tricare has approved every single thing my doctors have ordered.
That’s all I can think of as far as the cancer. The other bright sides? It’s sunny today. I have two episodes of Mad Men waiting for me to watch. All three of my kids are healthy. I have amazing friends and family. I have this blog: a place to dump my fears and anxieties. The internet is forever and this blog may be my legacy.

Kindergarten cancer conversations

I guess maybe I thought it would be a one-and-done kind of thing. “Allison, Mommy has cancer. But the doctor will fix me.” “Okay, Mommy.” *skips off to play*

Trying on the hat my friend Shelley sent for my soon-to-be chrome dome.

Trying on the hat my friend Shelley sent for my soon-to-be chrome dome.

Well, it didn’t go quite like that. And it was just the first of many conversations. I felt like I had to warn her about my impending hair loss because I remember how freaked out I was when I was her age and my dad grew a mustache. And he wasn’t even sick. It was weird and scary and I wasn’t 100% certain he was my dad anymore with that crazy 70s ‘stache.

This is me with my purple hair. Those are wings. No, I'm not an angel, I'm a fairy. A singing fairy. I love how she got my Wonder Woman baseball cap just right.

This is me with my purple hair. Those are wings. No, I’m not an angel, I’m a fairy. A singing fairy. I love how she got my Wonder Woman baseball cap just right.

So one night I told her that the doctor is going to give me very strong medicine to kill the cancer. And we can’t see inside my boob, but we’ll know it’s working because my hair is going to fall out. And I’m probably going to look silly, but I will still need lots of cuddles. Maybe even extra cuddles. The medicine might make me feel tired and if I was too tired she can play with Daddy. But I will never be too tired for cuddles. We talked about maybe she could cut my hair (something the oncology social worker suggested) and she giggled. I reminded her that the doctors are going to fix me and I’ll be all better.

“Can we stop talking about it now?” This is what she says when she’s on overload. She taps out.

A few days later we had this conversation:

“What if the medicine doesn’t work?”
“Then we’ll try another medicine. My doctor knows all the medicines that kill cancer. That’s what he does all day every day–kill cancer.”
“But what if none of the medicines work?”

“Then we’ll cut off both my boobs and when we go to the beach I won’t have to wear a shirt!”

That made her laugh.

One day she came home from school and she told me that she was crying at school about the cancer. And her classmates Savannah and Claire made her feel better. (Do you even have to be a parent to feel absolutely crushed by that? By her tiny little blonde tears in the school cafeteria? Ugh.)

The next day she brought this home. It’s a get well note from her friend Claire. from Claire

Friday night I was putting her to bed. On weekends she likes to “camp out” on the floor of my office. It’s hard to remember when it was a good time to sleep on the floor, but she loves it. She’s got a Doc McStuffins sleeping bag and a Disney Princess lantern.

“Good night, sweetie. I’ll see you in the morning.”
She bursts out crying.
“What’s the matter?!”
“I’m worried about your boob thing!”
“Honey, remember I told you I’m going to get medicine and I’ll be better.”
She grabs me and squeezes me as tight as she can.
“I wish you never had cancer!”

Hair: A story of hate, love, and loss

I have always hated my hair. It’s curly, for one thing. And growing up in the 1980s, curly meant frizzy. We didn’t have flatirons or smoothing serum or special no-poo shampoo that didn’t dry out your locks. The only weapon I had against frizz growing up was letting my hair air-dry instead of blowdrying it. In short, my hair looked like absolute shit for a large portion of my life. I spent my early twenties relaxing my hair with drugstore kits.

What's more messed up: My curls or my poncho?

What’s more messed up: My curls or my poncho?

People always told me “Oh people pay a fortune for curls like yours” and “You’ll love them when you’re older.”

Nope. Never did. What I learned to do was wrestle them into submission. To wage warfare with chemicals and hardware. How could I control my life if I couldn’t control my hair?

If you’re of a newer vintage, you won’t remember a world without JLo and Beyonce and a myriad of diversely beautiful successful women. When I was growing up there was one standard of beauty and it was tall thin and blonde. If you didn’t look like Christie Brinkley or Cheryl Tiegs you were doing it wrong. The craziest thing to happen back then was Cindy Crawford. Her success was a game changer because she was a brunette. That’s right, brown hair was a big damn deal.

Curls at Kid #2's birthday party.

Curls at Kid #2’s birthday party.

What am I working up to? Well, I’m gonna lose all my hair approximately 21 days after my first chemotherapy treatment. Why 21? Because that’s the time it takes for your hair to grow from the root to the scalp. I don’t know if it’s going to thin first or just come out in clumps, but the end game (for now) is that I will be bald. I will also–because of the particular meds my oncologist is prescribing to kill my cancer–lose my eyebrows and eyelashes and well, everything else. I try to keep a sense of humor about this. I talk about drawing on eyebrows with a Sharpie or sticking two fuzzy false mustaches above my eyes.

What’s not a joke is that I’m going to look bad. Like really bad. Worse than I have ever looked in my life. And while I wish I could say I’m above vanity and ego…I’m just not.

Here’s another thing I’ve learned about chemo that I had wrong. When I thought about cancer before I thought “bald and skinny. Well, at least there’s the skinny part.” Wrong. They prescribe steroids to conteract inflammation. And these days most people gain weight during chemo. Imagine that: puking your guts out, yet gaining weight. Fun, right?

I don’t want to get into it too much, but let’s just say my BMI isn’t what it used to be. I’d say I’m still hanging onto the baby weight, but the baby is turning six so I think I have to own the extra weight. It’s no one’s fault but my own. I eat too much and exercise too little. Like the vast majority of Americans. But I’m sensitive about it, as many people are. I actually avoid going places I may see people I know because I’m ashamed of the way I look.

The way I look with all my hair and no steroid weight! Not the huge, bald, eyebrowless, maggoty-looking creature I see in my future.

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My curly hair in Singapore

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My curly hair in Cancun. Supermodel, she ain’t. But does she deserve a decade of harassment?

Am I making too big of deal out of all this? Sure. But before you judge me as frivolous or lazy (people looooove to judge others for their weight, don’t they), you should know this. When I worked in the video game industry, my image appeared on people’s TV screens all over the country. And a lot of people didn’t like what they saw. I was too fat and ugly to live in their estimation. I was so hideous that they threatened me with death and rape. Because my face and body were an insult to their eyes.

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My curly hair at E3. This is the girl that gamers deemed so hideous and obese I should be raped and killed.

Over time, that shit had long-term effects. Like, I refuse to let people take my photo. I have to control the image. I get nervous in crowds sometimes, especially if I see cameras.

But this was all long ago, Christa, why bring up the past? Because of things like this. The last time I made a blog post I saw that the vast majority of the traffic came from Twitter and Facebook. But there were a couple of outliers and I’m always interested in how people find this blog. So I clicked the link and found this.

what happened to trixie360

This will exist forever and there are dozens more exactly like it and much, much worse. How would that effect your self-image if it was about you? Some of you reading that might even have chuckled at it. Would it be funny if it was about your daughter or your wife?

So yeah, I’m fucking sensitive and fragile and all that. And being bald isn’t going to do me any favors in the looks department and I’m going to have to live in my disgusting body for several months without even my hair to hide behind.

I didn’t mean for this post to be such a downer. I meant to say that on the eve of its destruction I have, at long last, learned to love my curls. It will be several years before it is this long again, and it may come back a different texture. My unruly mass of dark hair is my defining feature (well, that and my rack, which is another impending loss) and I decided to give it a glorious send-off by having it colored a vibrant fuck-you purple.

Before and After the Purplesplosion.

Before and After the Purplesplosion.

Next week is wall-to-wall medical shit. Two more biopsies (I predict the left boob is a false alarm, but that the cancer has spread to the lymph node in my right armpit), an echocardiogram, and surgery to install the mediport. I watched a video of the procedure on YouTube, which may have been a mistake.

It is strange that right now cancer is having its way with me but I feel physically fine. Next Monday I will begin to feel ill in order to get better.

Cancer gets real

It’s my second visit to the oncologist, Dr. Cappuccino. My husband and daughter are with me, and I’ve got my Binder of Doom tucked under my arm. It’s filled with all my shit: insurance approvals, notes, bills, etc.

BinderI say hello to the lady in reception. I call her Harley because she has a Harley Quinn lanyard around her neck. It’s our thing. Most of the people in this office have no idea who Harley Quinn is. Among the patients here, my middle-aged ass is a spring chicken. When you think cancer you think bald kids and lovely young women and handsome athletes. This is not the truth of cancer. The truth is that it’s primarily an old-person’s disease. As a population’s life expectancy increases, so do the rates of cancer. Oncology offices are chock full of the elderly. It’s like an early-bird buffet with chemo instead of roast beef.

I’m in good spirits because with this visit we are armed with more information about my particular flavor of breast cancer. It’s estrogen-positive, HER2 positive, and I don’t carry the breast cancer gene. Now we can get serious about a plan. And I need a plan of action to stay sane. The waiting and the unknown are making me nuts.

Dr. Cap lays out the plan for chemotherapy, which we will do prior to surgery. This is called neoadjuvent therapy and it’s rather new. I will still have surgery, but if all goes well with chemo, Turdy will be small to non-existent.

Take THAT, shithead.

Take THAT, shithead.

So here’s the plan: On or around April 27 I will begin 6 rounds of chemotherapy spread over 18 weeks. So every three weeks I’ll have an infusion of drugs and then 10 days later I’ll have a blood test to check my white counts. Here—as I understand it—is the cocktail I will have:
Carboplatin
Docetaxel
Herceptin
Perjeta
That’s if everything stays status quo. Because there were also a couple new possible complications discovered in the MRI.

If the lymph node in my right boob is cancer the treatment will be mostly the same (I think). If the area that lit up in the MRI in my left boob is cancer we’ve got a different set of problems. It could even be a different kind of cancer—hormone negative for instance. This is too much to think about right now. I decide the left boob is nothing and hope the biopsy will prove me right.

mediportDr. Cap then says we need to get my surgeon (Dr. Boobcutter) to install a mediport in my chest. And he’s ordering an echocardiogram to get a baseline because the antibody drugs (Herceptin and Perjeta) can cause—usually temporary—heart damage.

He asks if Nurse Buffy has scheduled the MRI-guided biopsy for my left boob and the ultrasound/possible biopsy for the lymph node in my right boob. I’m rubbing my forehead with my knuckles and my shoulders are up around my ears. Not yet, I say. Now I am looking at four new appointments, a possible second cancer and different plan of attack. Dr. Cap is talking about a clinical trial in which they administer the hormone therapy at the same time as the chemo instead of after. (Did I mention I’m going to have hormone therapy for five years?) The trial will require an additional biopsy of the original tumor and if the left boob is fucked up then I’m ineligible.

I break at this point. It’s too much and too real. I start to cry and Cap searches his cabinets for tissue. There is none. At some point a nurse I’ve never seen before has come in and her face is impassive while I cry. She doesn’t offer to go find tissues. It occurs to me she may be a bot. I feel terrible crying in front of my daughter. The first time she saw me cry was on 9-11 and the shock and horror on her four-year old face made me never ever want to see it again.

“Will I be a bad person if I don’t want to do the trial?”
“No, it’s voluntary,” Cap says.
“But will I be killing future people if I don’t?”
“No, not at all.”
Nurse Bot just stares.
“I’m sorry. I don’t want to do it. I don’t want any more meetings or changes in the plan. I just want this shit out of my body.”

Cap understands and he types up the orders for the echocardiogram and the mediport (which still fucking grosses me out). My husband asks him to please put it in as a referral because our insurance, Tricare, makes us pay a higher portion if they don’t pre-approve everything. So that blood test he told me to scoot next door to have done last time? Tricare didn’t pre-approve it, so we paid more. To be fair, Tricare hasn’t failed to approve anything my doctors have asked for, but waiting for them to green-light every fucking fart and belch is frustrating.

Finally, Cap is done and Nurse Bot wants to feel me up. She wants a little hands-on with Turdy and it’s not clear to me why. I ask my family to leave and she gets her feel. Her hand’s on my boob and she says, “Christa Charter, what a great name for a writer…”

Two minutes later Nurse Bot is giving us a tour of the treatment room (big recliners, IV poles, large sunny windows, dishes of candy) and she introduces me to the chemo nurses as “Charlaine.” Seriously. She says “She’s thinking about the clinical trial.”

I despise her now. And the unsmiling, unfriendly nurses. “No I’m not. I’m not doing the trial.” I hate them. I hate everything. I hate that my body has done this to me. I do not want this.

Gunny takes me home and fetches Jack in the Box for dinner. I shouldn’t be eating this crap, but I’m just…in a bad place. My head hurts and I feel nauseous. Stress has to manifest somehow and today it is giving me a migraine. Every time I think Okay, I accept this, I’m dealing with it, I learn that no I am still floating on this river of denial. Maybe writing about it hasn’t helped me deal at all and has instead made me believe on some level that this is fiction. This is just another Lexy Cooper adventure.

I was not brave and positive and funny that day. I was sad and angry and cried in front of people. On my horizon is waiting for Tricare to decide it’s okay to fucking treat this cancer and being poked and prodded and possibly learning more really shitty news. But I will shove that to the back of my aching head and I will watch Mad Men and build my new LEGO set and get my hair did for the last time before it comes out.

Resonance

Yesterday, I finally had that MRI I’ve been waiting on for what feels like forever, but was just a couple weeks. I’d had a CT scan before (the one where you have to drink horrifying chalky liquid flavored to resemble Hell’s pina colada), but this was my first MRI. Quick note: MRI stands for Magnetic Resonance Imaging and uses a powerful magnetic field, radio frequency pulses and a computer to produce detailed pictures of your insides. In my case, my breasts. The purpose of this test was to see if there was anything hinky going on in my boobs that the mammogram didn’t pick up. Specifically, we were on the lookout for naughty lymph nodes. If Turdy the Tumor wants to conquer new ground, he’ll go for the lymph nodes first.

Here’s how it went down. First, I am claustrophobic. Not like diagnosed by a mental health practitioner or taking meds for it claustrophobic, but the breaks out in a cold sweat and feels pukey whilst in a tunnel claustrophobic. I skipped climbing to the top of Arc de Triomphe for this reason. Anyway, the nice lady who scheduled my MRI suggested I hit up my primary care doc for a mild sedative. So, armed with a Xanax, I showed up for my MRI. I changed into a gown and scrub pants. The assistant put in an IV and gave me earplugs and a choice of tunes for the headphones: Classical, Jazz, or Easy Listening. Suspicious that the jazz would fall into the unacceptable easy jazz or, as I call it “no-balls jazz” category, I went for Classical.

Breast MRI machine

I lay face-down on the tray-thingie with my boobs dangling down into a hole and my face in a donut-ish pad. I made a joke to the tech that the picture probably would have been better three kids ago. She laughed, but she couldn’t be much older than 21. She’ll learn.

So then I slid into the tube. Since I was face-down and had my eyes closed, it didn’t feel like I was in a metal tube, so my claustrophobia didn’t rear up. I knew that there would be a noisy THUNK THUNK THUNK sound (hence the earplugs and headphones) but what I wasn’t prepared for was the WAAA! WAAA! WAAA! that followed. At first I thought the building was on fire. The sound went on. Apparently this was part of the program, but man, it felt like my tubecraft had been put on missile lock by an enemy MiG.

The tech checked in with me every once in a while through the headphones. “Doing okay, Christa?” “Yep.” My cheekbones were a little sore from being pressed into the donut. The tech warned me that she was about to inject the contrast dye into my IV and I asked if I could move my head. She said the picture would be better if I didn’t move at all. So I didn’t. The dye felt a little bit cool as it went in, but not uncomfortable.

THUNK THUNK THUNK WAAA! WAAA! WAAA!

missile lock

I had ten seconds of a panicky feeling, but pushed it back down. I imagined I was in a cool little deep sea submersible watching peaceful sealife swim around. The whole thing took almost an hour. I’m REALLY glad I had that Xanax. Finally, they had the images they needed, so they slid me out, took out the IV and sent me back to the dressing room. The assistant said that the radiologist would review the pictures and talk to my doctor and I would have some results in 24 hours.

So, I was quite pleasantly surprised to have a phone message from a nurse in Dr. Boobcutter’s office (I call her Buffy because she’s the Cancer Slayer) this morning. I’d planned on waiting all day. I returned her call and she walked me through the MRI results. They were not what I was expecting to hear:

  1. There’s an “enhancement” in my left boob. The good boob. This is something that’s not on the mammogram.
  2. One of the lymph nodes in my right boob (the bad one) looks “suspicious.”
  3. Turdy the tumor looks bigger.

 

Breast-mr-2

This is not my rack. But this is the kind of photo that is the result of a breast MRI.

 

So here’s what they want to do next:

  1. Do an MRI-guided biopsy on the whatever-it-is in my left boob. Does that mean they’re going to stick a needle in my tit while I’m in that tube? Good luck with that, doc. Beware the missile-lock alarm.
  2. Ultrasound the dodgy-looking lymph node and possible biopsy it.
  3. Take another look at Turdy. Though, if I’m going to have chemo BEFORE surgery, we can probably skip that part. Seriously, we know he’s made of cancer and we know he’s an aggressive little fucker. Howzabout we stop poking him and start getting him the fuck out of my body? Cut him, nuke him, fart in his general direction. I don’t give a shit, but let’s do SOMETHING to him.

So. Yeah. Not great news, but none of this is crazy bad news either. This all falls well within the normal limits of early-stage breast cancer. This is not the time to panic, and things are moving swiftly again. I have an appointment with Dr. Cappuccino the oncologist on Thursday to discuss the chemo plan. Buffy is scheduling the MRI (for my left boob) and ultrasound (for the lymph node in my right boob). Things are happening.

In the midst of all this waiting and yucky shit though, I have been overwhelmed with kindness and concern. Friends far and near have reached out to offer encouragement and an ear. And I don’t just mean geographical far. I’ve heard from high school friends and ex-boyfriends and people I worked with long ago. They’ve offered support and help. Friends have sent me cards and flowers and Starbucks cards and books and one dear friend who has been through cervical cancer sent me a big bag filled with socks and a blanket and a journal and manicure kit–all to keep me occupied and cozy during chemo. Local friends have offered to babysit, cook dinner, drive my ass around and bring me a pitcher of sangria. I feel so loved and supported it’s hard to describe. I’m so grateful.

 

My New Book Has Arrived!

Lexy4CoverSmallHip hip HOORAY, my new book is now available! It’s the fourth full-length Lexy Cooper mystery. You can pick up the eBook right now at Amazon, or you can wait for the paperback this summer. Any questions?

What if I don’t have a Kindle?

You’re in luck, cowboy. You don’t need the dedicated eReader to enjoy Kindle books. All you need is an electronic device with a screen. You can read Lexy books on your PC, your tablet, or your phone. Just download the free Kindle app for your weapon of choice.

I’m thinking about trying Lexy books, but where should I start?

Start at the beginning, grasshopper. The journey of a thousand miles starts with the first page of Schooled. All books in which Lexy appears are in this order:

  1. Schooled 
  2. Pwned
  3. I Saw Lexy Kissing Santa (short story)
  4. Griefed
  5. Summer Wind (Mike Malick #1)
  6. Glitched

TriplethreatColorFinalsmall copyYou can actually pick up the first four of these in one package: Lexy Cooper Triple Threat. It’s available in eBook and paperback.

Well, crap, I thought I was up-to-date, but I haven’t read Summer Wind. Do I need to read it before starting Glitched?

Heck no! There are a couple of things that happen in Mike’s book that are referenced in Lexy’s book, but not knowing them will not prevent you from following or (hopefully) enjoying Glitched.

I’ve read all the books, but can’t keep track of what’s what and who’s who. Can you help?

Yes indeed, young Skywalker. My dear friend Wendy wrote this Lexy primer to help refresh your memory.

Glitched came out at midnight last night and I’m already finished. What’s next for Lexy?

Yikes. You, sir or madam, are hardcore. And I love that. Lexy will next appear in a short story called Hurricane Lexy that picks up immediately after the end of Glitched. Then she will make an appearance in the second Mike Malick book You Go to My Head this fall. The next full-length Lexy mystery novel a.k.a. “Lexy 5″ will follow in the first half of 2016.

The Good, the Bad, and the Not-so-nice

The Good

Great news! I do not carry the breast cancer gene! Dr. Boobcutter called me himself to tell me. While it’s always good to not have a gene that’s trying to kill you, let me tell you why this is extra-awesome. It means my family can rest easy as well. My mother and aunts and daughters of course, but also my son and brother and any future grandchildren or nieces and nephews. The dudes, too? you ask. Yes. Men who carry BRCA1 or BRCA2 are more likely to get prostate cancer, and can pass the bad gene to their offspring. You can read more about the gene here.

Let’s pause a moment to celebrate this turn of events.

happy dog

The Bad

I had a whole day to share the good BRCA news with my family. And then the next day I notice that I have a new message in the online charting system for the hospital. It’s a message from my oncologist Dr. Cappucino and it says that my cancer is HER2 positive. The thing we did not want.

NOTE: I’ve noticed that in this odd side trip in my life that as much as I try to fake myself out and prepare for bad stuff, I’m not very good at it. I told myself (for what–three weeks now?) that the HER2 would probably come up positive. But I guess I didn’t really believe it, and it hit me pretty hard. This was my low point–worse than when Dr. Movie Star told me it was cancer.

Dr. Cappucino’s note went on to say stuff about chemotherapy and stuff. But first, a reminder on what the hell HER2 is.

HER 2 comparison

Does anyone else find it funny that the breast cancer cell totally looks like a boob? The tweet length dealio with this antibody is “HER2 makes cancer grow like a motherfucker. Kill it with chemo.” If you’re a science nerd like I am, read this article about how the National Cancer Institute identified the role the antibody plays and how to stop it. This treatment is cutting edge–one of the drugs was only approved in 2014. This is iPhone 7 shit.

Anyway, Cappucino is recommending Herceptin and Perjeta as part of my chemotherapy. (Don’t read the side effects, Christa, don’t you… ACK! My heart!) He also mentioned that there’s a clinical trial at my hospital that might be a good option for me. He said to give him a call if I have any questions.

I haven’t called him. I haven’t seen a doctor in two weeks. I’m still waiting to make the breast MRI appointment because I still haven’t gotten my period. Which is several days late. I know I’m not knocked up, so either I am more stressed than I have ever been before (a distinct possibility) or my body has declared “fuck you” and has thrown itself into sudden menopause. It’s REALLY starting to piss me off.

angy turdy tumorBeyond waiting, the thing that’s irritating me is the possibility of getting chemo/hormone therapy before surgery. It’s not uncommon, it seems to be very effective, and yet I feel like I don’t want to do it that way. For one thing, Turdy is fucking annoying me. He’s shape-shifting inside my tit, and as he is both HER2 positive AND according to his Ki-67 levels 50% of his shitty little self is in mitosis, he’s probably GROWING. You can almost see him from the outside now, in profile. He’s lumpier than before. He might be flipping me off. I want him OUT. I am starting to feel empathy for the crew of the Nostromo.

The Not-So-Nice

A friend asked me this weekend, how did I get this? Was it maybe the 30 years of drinking Diet Coke? Someone else sent me an email about how refined sugar causes cancer in rats. Did I eat too many sweets and give myself cancer? Well, I don’t know. No one knows. Do people need to make this my fault in order to feel safe themselves? Is chaos so frightening that blame must be placed on me? I also smoked cigarettes sporadically between kids. I know that’ll help give you lung cancer, but does it have a link to breast cancer? As far as what I did to summon breast cancer (according to the risk factors) I know I did some things right:

Had my first child before age 30
Breastfed my babies (2 of them for over a year)
Didn’t take oral contraceptives (they make me crazy)

Does all that outweigh the things I did wrong? Obviously not. But hey, is it necessary to know why I got cancer? Must we assign blame? Mightn’t it be like an unlucky roll of the dice or being struck by lightening? Do I need to be judged for this illness, or can we just move forward and fight this fucker?

Tests and the waiting game

Okay, Tom Petty, you know your stuff. The waiting is the hardest part…at least so far.

The initial diagnosis happened so fast. It was Boom! Lump. Boom! Mammogram and ultrasound. Boom! Biopsy. Boom Boom Hiss! It’s cancer, bitches.

Darth Turdy

Darth Turdy

Just two days after learning I had breast cancer I met with my breast surgeon, Dr. Boobcutter. A week after that I met with my oncologist, Dr. Cappucino. In between and since has been a whole lot of waiting.

What am I waiting for?

  • Genetic testing to see if I carry the breast cancer gene BRCA. Why is this a big deal? Because if I’ve got it, there’s a 30% chance that the cancer will recur. It’s in this case that we start discussing a double mastectomy. Upside: Angelina Jolie reconstruction tits? Downside: All of my relatives and descendants are in jeopardy. My blood was drawn for this on March 12. Dr. Boobcutter said it would be 7 to 10 days.
  • Breast MRI. This will give us a clue as to if Turdy has sent scouts into my lymph nodes. Why is this a big deal? Because if my nodes are clean we can probably just evict Turdy and do a round of radiation. I.e. no chemo. What’s the holdup? My goddamn menstrual cycle. [Editor Me: Yuck, are we really doing this? Writer Me: Are we going for pretty or honest? Editor Me: *sigh* Writer Me: Okay, then.] Because boobs swell and change over the course of the month, they need to pinpoint the MRI between day 7 and day 13 of the cycle. Which means that I’m supposed to call the scheduler when I get my period. So they (Boobcutter, Cappucino, and the MRI peeps) are all waiting for that to happen. And you know how being stressed out about it helps that situation. This may be even more stressful than a teenage broken condom scenario.
  • HER2 Antibodies. The initial test (IDC or immunohistochemistry) came back 2+ or “equivocal,” requiring further testing. The second test (I assume FISH or Fluorescence in-situ Hybridization) was also inconclusive. So apparently they are now running a third test. Why is it a big deal? Because if my cancer has HER2 antibodies it is very aggressive. And I may get chemo prior to surgery (this is called neoadjuvant therapy). If Turdy the Tumor is HER2 negative I may not need chemo at all! So HER2- = maybe chemo HER2+ = Chemo City. Basically, this is a test I want to flunk. HER2-positive cancers are much more likely to recur and the five year survival rate drops significantly. Do not want.

So, really, I’m just sitting around waiting to take tests and to get test results. Except when I went to see It Follows with Gunny last Friday. And spent most of the film checking for messages from Dr. Cappucino’s office because at that point the second HER2 test was already a week late. Halfway through the film I saw a missed call and went into the hall to return it and found out that it would be another week for that pesky HER2 shit. That was scarier than the movie.

I have a new book coming out next week and it’s really hard to give a shit. I want to DO something. I mean besides bingewatch Empire and Bloodline and The Jinx. I want this fucker out of my body.

Telling a young child about cancer

What should we tell our five-year-old daughter about my cancer? What is the right thing to say so that she will understand but not be terrified or confused? How much can her Kindergarten brain handle?

My husband and I spent a lot of time in the days since my diagnosis thinking about these questions. And there are plenty of resources that exist for just such a dilemma. The National Cancer Institute has a great page on talking to kids about cancer. But me, I tend to put stock in personal experience. So I asked around in the discussion boards at breastcancer.org. There were some women that said Allison is too young to be told anything, which pretty much no one agreed with. It was so refreshing for me that none of the differences of opinion led to threats of rape and death. I think I’ve been tainted by gaming forums forever.

Blog_Calvin_Temper_Tantrum

I feared two things: That Allison would completely freak out and never have another happy carefree moment in her life and/or that I would at last break down and cry about this cancer shit, causing a domino effect in which everyone in the family was weeping and rending garments.

The plan, as of Wednesday was to keep gathering intell and formulate a plan of communication. So basically the plan was to make plans at a future date. It was like being back at Microsoft.

Now, my daughter is on the melodramatic side and always has been. Combine that hard-wired tendency with the knowledge of mortality that arrives around age four and the burst of super-emo in kids around six when the desire to be independent struggles with the urge to still be a baby. Let’s just say Kid 3 and I have already had several tearful conversations about how someday Mommy is going to die. And every time I wanted to promise her I will never die but of course what kind of shitty parent does that?

So, this all had powder keg potential. I knew it had to be done, but maybe I could wait until I was going in for surgery? Or maybe even hold off and tell her if/when I lose my hair? These were the desperate musings of a professional procrastinator.

Wednesday after school she came home wearing different clothes. She’d had an accident. This is a kid that never has accidents. Like maybe once or twice when she was three, and nothing since. My mom instincts told me that it was time. She’d heard us talking, she knew something was going on and no one was being straight with her. We were treating her like she wasn’t even part of the family. It was time. I didn’t even discuss it with my husband.

I pulled Allison onto my lap and said, “I want to tell you something.”

I see Gunny’s eyes widen.

“Mommy has a yucky thing in my boob. Right here. And a doctor is going to get it out and make me better. Okay?”

“Okay.”

The yucky thing has a name. Its name is cancer.

“I heard that word before.”

“It’s not like a germ, so you can’t catch it like a cold, okay? You’re not going to get it and Daddy’s not going to get it. The doctor will fix me and I’ll be fine, okay?”

She started to cry. “I’m worried!”

I don’t know what I said. Mommy-murmurs of “It’s okay, I’ve got you” probably. We dried her tears and had some cookies. Because the ladies at breastcancer.org had advised it, I sent her Kindergarten teacher this email:

“Dear Mrs. Kindergarten,

I just wanted to let you know about something going on in our family that might effect Allison’s behavior at school. Last week I was diagnosed with breast cancer (it’s early: stage IIA) and yesterday we told her that I have a “yucky thing” in my boob and its name is cancer and that the doctor is going to get it out. And that she can’t catch it.

So, we wanted you to be aware in case she starts talking about cancer or boobs or acting out in some way.

Thanks for understanding. You’re very important to Allison.”

The next day Allie brought home a picture she’d drawn for me. I got an email from her teacher saying that Allison had come back from lunch upset and they talked about what was going on at home. Mrs Kindergarten told Allie that her own grandma had the same kind of owie and the doctors made her better. Then she gave Allie some extra time to draw a “love note” for me.

Allison drawing

For the next couple of days Allison was extra clingy and required many many cuddles. We had a sleepover one night in her bed and watched Barbie Princess Power. She cried a little and threw herself on top of me wailing “I’m worried about that boob thing!” On Friday before her dad walked her to the bus stop she asked me if I’d be here when she got home. She thought maybe it was the day the doctor was going to cut the yucky thing out. I assured her that I will let her know when that happens.

As for the picture she drew me, I keep it in a Spider-Man folder with all my test results and insurance approvals that I carry to my various appointments. So she’s always with me. Because I love my life and my family desperately, but this little girl is why I’m needed on this planet.

Suddenly, cancer

Six days ago I was diagnosed with breast cancer. Dun dun dunnnnn.

How did this happen? Beats me. All I know was that I discovered a lump, waited a month to see if it went away, and then showed it to my primary care doctor. She sent me for a diagnostic mammogram and ultrasound.

*NOTE* I’m 46 years old and I’ve never had a mammogram. A few years ago—maybe even before I turned 40—a study came out saying that the benefits of regular mammograms before age 50 didn’t outweigh the extra costs, anxiety, and false positives. There are other schools of thought that disagree. Because this one helped me avoid the tit-press, it is the one I chose to believe. Me, to my doctor: “I thought I didn’t have to have them until I’m 50. Doctor: *eyeroll* (She’s cool, and I’m paraphrasing). The lady who actually operated the tit-press rolled her eyes the same way.

So, there was the lump on the mammogram, all nice and bright. It existed. An ultrasound revealed that it was solid. If it had been fluid-filled it would probably be a cyst and therefore no big deal. But although 80% of these solid boob blobs also turn out to be no big deal, you gotta stick a needle in them to be sure.

Me, to radiologist (who looks like a movie star, btw): “Can you stick a needle it in right now?”
Radiologist: Naw, I think we’ll set up an appointment.

So, because I’m a regular taker of ibuprofen and aspirin for headaches and whatever else hurts (but not my boob, which had no pain until I found the lump and then “felt” (I say, because I’m pretty sure it was psychological) like a spikey burr of potential death) which are blood thinners, I had to wait five days until the blood thinners GTFO’d.

*NOTE* Intra-parenthetical parentheses, Christa? Really? Shut up. I have cancer.

The biopsy was scheduled for Monday, March 9. I spent most of the days in between the two appointments lurking in the forums at breastcancer.org and consulting Dr. Google. That, and playing iPhone games and watching TV. Nothing else got done. Nothing. The kid would have starved to death if my husband hadn’t been doing everything. At this point, my older daughter becomes suspicious. I’m waiting for phone calls and casually mentioning doctor’s appointments, two things she knows I hate. So, I admit (with the preamble “Don’t freak out…”), that I found a lump yadda yadda and we we’re checking it out and no big deal.

During the biopsy, there are times that I am just chilling in the room, lying on my side, staring down the blob on the ultrasound. I’m memorizing it. Because I’ve been told I will not have the results of this biopsy until Thursday. If I’d had my phone with me, I’d have captured it for future perusal, but all my stuff was in a locker in the dressing room thing. I looked deep into its tumory soul and I did not like what I saw there. It looked like a soft-serve turd, complete with a fuck-you swirl like Bob’s Big Boy hair. In the lines and shadows I thought I saw an evil little face. I drew it for my older daughter like this:

turdythetumor
Dr. Movie Star came in, gave me a shot to numb up my boob and then stuck a little hollow needle in the tumor three times—each time withdrawing a tiny chunk with a ka-chunk sound like a stapler. They bandage me up and send me home where I convalesce on the sofa with more binge-viewing. My plan is to wait out the results this way: distracting myself with other people’s drama.

After a lazy day on the sofa, I’m awake until 3am, doing research on my phone next to my snoring husband. I Google stuff like “characteristics of benign tumors,” and “ultrasound differences between benign and malignant tumors” and I come up with some good stuff:

  • My tumor is rounded not spiky. (Cancer is spiky as fuck)
  • My tumor is wide, not tall. (Benign tumors grow with the grain of the breast, cancer goes wherever the fuck it wants)
  • My tumor has clear borders. (Cancerous growths often appear fuzzy or blurred at the edges—it doesn’t want to be contained)
  • My little soft-serve turd tumor is probably benign! Hooray!

The next morning, I tell my husband and older daughter of my medical research, and how I feel quite relieved. My daughter goes to her dad’s and I tell her I will text her when I hear back from the doctor on Thursday. “Don’t worry,” I tell her. “It’s going to be fine.”

Around five o’clock that evening I see a missed call. It’s a private number. I listen to the voicemail and it’s Dr. Movie Star. He wants me to call him. I’m heading for the privacy of the bedroom and searching frantically for something to write with so I can jot down the number and call him back. The phone rings again. Dr. Movie Star really wants to talk to me.

“I’m sorry to have to tell you this…”

It’s cancer. Here are the notes I took during this call.
cancernotes
My husband comes into the room and I give him the thumbs-down.

Now, a week before this, I wouldn’t even have known to ask about hormone receptors or HER2 status, but now I know that the particulars of the cancerous fuckwad will tell me how aggressive it is and how we will fight it. But Dr. Movie Star reveals that the full pathology report hasn’t come back, just the headline “Yup, It’s Cancer.” He’s already called my primary care doc and the breast surgeons that he thinks are the best.

He apologizes again. “I really thought it would be benign,” he says and I say “I know, it was curvy instead of spiky!” He sounds genuinely bummed and surprised and I find myself saying “Don’t be sad. Thank goodness you decided to stick a needle in it.”
*Note* Comforting other people about my cancer diagnosis has already become a familiar thing.

I walk out to the living room with my piece of paper. I give my husband the details. I don’t cry. I have to tell my daughter and I don’t want to. She’s going to freak out. I don’t want to put this burden on her. I make jokes, downplay. This, too, will become a familiar flavor.
calliemessage
I send her a message and, hilariously, “ductal” auto-corrects to “ducktail.”

She’s only been gone a couple hours, but she comes back. “I want to be with you,” she says. Which, if you have teenagers you will know is a rare and marvelous thing. Like a unicorn. She comes home and sits next to me on the sofa, holding my hand.

*NOTE* Here is where I get clever. I know she’s interested in healthcare professions and she’s not…super motivated yet. I ask her to be my cancer buddy, my assistant, my amanuensis. She’ll go to appointments with me and be an extra set of ears. Take notes. Help me keep track of my stuff. This way she knows what’s going on first hand AND y’know if it stimulates her interest in the field, then bonus.

I call my dad. This is difficult. A year ago he had a quadruple heart bypass and still isn’t 100%. I tell him “Uhhhh I guess I have a little bit of breast cancer.” Talking to your father about your boob is weird. He agrees with me that I should wait until my mom gets home from Hawaii before I tell her. Because why ruin her vacation, right?

That night, lying in bed in the darkness I have an odd sense of relief. I’ve been afraid of getting cancer my whole life. I always suspected that this would happen, and it’s as if that other shoe has finally dropped. Part of me has been dreading this for so long that for ten or twelve hours I am almost at peace.

Wednesday I text my son (who is 23) an invitation to come over for dinner. I have to tell him, and I figure in person will be better. He doesn’t want to come over. I text that I need to tell him something. Should I just go ahead and do it in text? He replies “sure.” I am stymied. I don’t know how to begin. It was easier with my daughter because I’d laid the groundwork of what was going on.

I turn to my husband and daughter. “What do I say?”
My husband says, “Put ‘I have breast cancer.’”

Simple, right? But four words that change a person’s world. He’s my baby boy and I don’t want to cause him pain and worry. I type the words into my iPhone and I can feel the reality settling in. I. Have. Cancer.

Naw. Not possible. Someone’s going to call me and say there was a mix-up. My little soft-serve tumor-turd wouldn’t do me like that. He’s curvy and swirly! Someone mixed up the pathology reports. Everything will be put right tomorrow at the consultation with the breast surgeon. He’ll come in with a file chuckling and shaking his head, “Mrs. Charter, there’s been a mistake…”

My husband and daughter accompany me to the breast surgeon. He’s the first person to look me in the eye and talk about my cancer. He’s the second doctor to tell me that because I have big boobs I’m a good candidate for lumpectomy. (They take out the tumor and some stuff around the edges instead of removing the whole boob.)
We take a look at my pathology report. Turdy the tumor is estrogen positive. Okay, that means we can fight his ass with hormone therapy. If we cut off his supply of estrogen (through drugs or sometimes removing the ovaries) we may be able to starve him out.

The report on HERS2 antibody is inconclusive. They have to run another test. If it’s positive it means my cancer is more aggressive, BUT it will give us another weapon to fight him – antibodies. So, more waiting.

Ki-67. This, I hadn’t read anything about. Basically, it determines what percentage of the cells in your tumor are actively dividing (to make copies of themselves). It’s normally about 7 or 10 percent. A high rate would be over 20%. Turdy is at 50%. He’s growing like a motherfucker.

My surgeon, who is basically the hot-shit surgeon that other surgeons send their wives and daughters to, tells me that what we’re probably going to do with Turdy is throw everything we’ve got at him. I have found it useful to think of this in Star Wars terms.

death star

  1. Destroy the Death Star. That’s Turdy, and cutting him out of my boob. Lumpectomy.
  2. Go after the tie-fighters and any spacecraft that might have made a run for it. This is radiation.
  3. Scour the galaxy for any Imperial drones or outposts. This will be the chemo.

Another thing we’re waiting on is the genetic testing to find out if I’ve got the breast cancer gene. Because if I do, there’s a big chance that it will recur and that’s when we start talking about lopping off everything.

So. Status report. I have stage IIa breast cancer. Invasive ductal carcinoma in my right boob. The tumor is 2.6 cm. As of this moment there is no indication that it has spread anywhere else, and that is a good thing. If this cancer stays in my boob, it cannot kill me. If it gets out? If the Empire makes its way into my bones or lungs or brain? Then I freak out.

But for now, I am thinking of this as a problem that is fixable. If I lose a boob (or two) and my hair…well then, whatever. Better to be bald and flat-chested than six feet under, right? I have an appointment with the oncologist this week, and a breast MRI (to see if any of my lymph nodes light up under radioactive dye. And yeah, I already asked if I could get superpowers from this.), and then appointments with more people and more doctors. Basically, we’re assembling the cancer avengers and we’re going to knock this fucker out.
AvengersAssemble_052113_1600
This is really long, sorry. Here are some questions you may have:

Why are you even blogging about this? It’s TMI.
Because writing is how I process things. I’ve blogged about every other damn thing, so why not this? Plus, as soon as I became aware that I needed a biopsy I searched for a breast cancer blog so I could learn something via human experience versus a bunch of numbers. If you’re creeped out, go ahead and unsubscribe. No hard feelings.
Is this a cancer blog now?
No. I am not my cancer and I have a million and one things I’m interested in besides this. My intent is to keep blogging about writing and stuff with some cancer sprinkled in as needed. (As needed by me. Your mileage may vary.) Honestly though, I’m not making promises because I don’t know how I’m going to feel.
You’ve scared me. What if I have breast cancer too?
Then finding it early is your best weapon. Get a baseline mammogram as soon as you turn 40. If your mom, sister, or aunts have had breast cancer (or you know you have the breast cancer gene) you need to start getting mammograms earlier. Like ten years before the age your relative was when diagnosed.
Are you going to die?
Yes. We all are. My intention is to live into my nineties like both of my grandmothers. If that isn’t in the cards than I will fight like hell to get as many years as I can. My youngest child is only 5 and still needs a lot of mothering.
What do you need? What can I do?
Um, nothing right now, thanks for asking. I don’t feel sick yet. If we know each other and you’ve been through this yourself, I’d love to hear from you. As a new pledge in this shitty sorority I could use a big sis.

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