Trixieland

words about words

Chemo – Week 3

I haven’t felt much like blogging, and I thought about apologizing for the delay, but you know what? Fuck it. Here are my words about what’s what.

The Nausea

I felt really good the last time I posted and I assumed that things would improve each day afterward. That wasn’t exactly how it worked. On about Day 8 post-chemo I started feeling really nauseous again. Like almost more than the Zofran could manage. This doesn’t really make sense to me. Wouldn’t you assume that whatever it is that makes me feel like yakking would lessen as time goes by? Shouldn’t I get less barfy each day until I don’t feel barfy at all? I pondered if this is normal or a complication. I pondered calling Dr. Cap for a different nausea drug. But in the end I just sucked it up. I keep my Zofran by my side at all times.

The Fatigue

I had good days and I had bad days. One day a walk to Allison’s school bus stop would leave me exhausted, and another I could do housework and make a trip to the grocery store and remain upright. I was flattened by a terrible migraine on Day 10. It was the worst I’ve ever had in my life and I actually barfed. I had migraines before the cancer, but I’m just going to go ahead and blame this on cancer too. Because fuck cancer.

The Gross Stuff

I’m learning a lot of things. Like, raspberries are actually acidic and can give you heartburn from hell. Now I look up everything before I eat it! Also, cancer did not give me a hallpass on lactose intolerance. Chocolate milkshakes, while delicious, still make my tummy hate me. Most of my reading of the chemo side-effects handouts lead me to believe that chemo generally shuts down your menstrual cycle. But, as I found out, it’s not the case with everyone. Some of my homies on the BC boards even had the chemo throw their ovaries into desperate last-ditch overdrive providing mega-periods. Fun fact: you can’t use tampons on chemo because bacteria/germs/low white count yada yada yada. So contemplate that: Periodzilla plus old school diaper-pad action plus the aforementioned shit-fountain. Basically that was Week 2.

Speaking of white count, mine is FABULOUS, thank you. It’s just as robust as before chemo so I get a gold star. Way to go, bone marrow! You rock!

The Hair

I was told by both Dr. Cap and the oncology social worker that my chemo drugs (Taxotere and Carboplatin) cause hair to fall out on Day 21. They were both specific. I read that hairloss is often presaged by a tingling feeling–or even pain similar to a sunburn–on the scalp. I felt no tingles, ergo, I thought I had another week before The Fall. Then, on Day 15 I took a shower and this happened when I rinsed the shampoo:

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So I freaked out. I mean, I knew it was coming, but I thought I had a few more days. So I Googled “When to expect hair loss taxotere” And from that I found a discussion board and the consensus was Day 13-16 is when it begins. The next morning I woke up and gave a lock of hair an exploratory tug.

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Oh boy. Later that day we were at the party store getting supplies for Allison’s upcoming Astronaut birthday party and I picked up a couple costume wigs. Why not fancy legit wigs? Because my BC board girls say they’re goddamn itchy and hot and they suck balls. So, rather than get a two-hundred dollar thing that looks realistic, why not have some fun for those rare times I want to have hair and just rock hats (or skin) the rest of the time?

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The next day a shitload more hair came out and I knew my do’s days were numbered. So, as the social worker recommended back at the beginning of this, I let Allison cut my hair.

IMG_1835She had a great time doing it and pouted when I told her that was short enough for today. She now says that after cooking school she wants to go to hair-cutting school. (Why, Christa? Why does the girl having an astronaut birthday party not want to be an astronaut? Well, because she’s terrified she will go to “out of space” and fall into a “space hole” which she learned about on Cosmos. Way to crush a dream, Neil Degrasse Tyson!)

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You know what? I think she did a great job! So now I have less hair (but still a lot of hair!) and my next round of chemo is this coming Tuesday and I feel much more confident about what to expect.

Side Effects – The Straight Poop

It’s been a full week since my first chemo treatment, so I’m going to dish the details on what it feels like. And it’s not going to be pretty. Rather than engage in image-crafting or build some kind of Trixiebrand, I’m just going to put it all out there. It might make you uncomfortable, and if you want to scroll on by, that’s cool. But maybe you’ve just been diagnosed or maybe your mom or a partner is about to have chemo and you just want someone to give it to you straight. If that’s the case, I’m your huckleberry.

Huckleberry

In The Beginning

Propped up by steroids (I was prescribed two tablets per day for three consecutive days starting the day before chemo and also received steroids intravenously) I felt pretty good the first couple of days. On Day Two I got up, went to the hospital for my Neulasta shot and then shopped at Target, wrote a lengthy blog post, and made dinner for my daughters. In retrospect, I was shockingly productive!

I wasn’t hungry and felt mildly nauseated, like morning sickness. My bones were a bit achy, but not unbearably so. I spent Day Three on the sofa getting caught up on Mad Men. I’m a bit concerned about Don Draper…

Draper window

A Downhill Slide

On Day Four, the diarrhea began. Here’s where you’ll want to stop reading if you’re squeamish. How to describe the chemo-shits? Hmmm. Let’s say my butt is a soda fountain like at a fast food restaurant. soda fountainThe button for Solid Poop is marked “out of service.” The button for Liquid, Yet Still Recognizably Fecal Matter is covered by a Post-It note that just says “Sorry.” There’s no ice, no Fanta; there are only two selections:

  1. Firehose of Antifreeze
  2. Tar Drip

If you saw this stuff on the sidewalk you wouldn’t go, “Someone shit on the sidewalk!” you’d look up and wonder what the hell alien sludge had fallen from space. After a couple dozen rounds of this, you may find yourself sitting on an ice-pack in hopes of soothing the ring of fire.

On Day Five my mouth turned on me. Everything tastes like burning. Water tastes bad. Between the nausea, knowing what will happen on the other end, and the fact that nothing tastes edible…there’s not a lot of incentive to consume food. tastes like burningExcept that I know I need to. I’ve got to rebuild the good cells that are collateral damage in this cancer-killer cocktail. People tell you lots of things you should be doing. Eating lean protein. Exercising (!), drinking smoothies.

Fuck that.

If the only thing I can choke down in a 24-hour period is a piece of toast, a shortbread cookie, and two bites of vanilla pudding? That’s what’s for dinner.

Worse Yet!

I thought I was doing pretty well, considering, until I actually attempted something more taxing than shuffling to the hammock on the back patio. Because this fatigue…damn.  Sitting up for an entire episode of Law & Order SVU was too much for me. I got winded halfway through folding a load of laundry and stopped.  I take hot baths to soak my achy bones (it’s worst in my hips/pelvis) and rest my head on Allison’s plastic whale that covers the faucet—a leftover from her baby days. When my hair is wet it feels too heavy for my head.

So, on Mother’s Day, I got my first taste of real life: Brunch at 13 Coins with my whole family and some friends. Table for 10. This was my arrangement, by the way. I set this up knowing it would be post-chemo and all that. So I don’t blame anyone else.

I did make an effort. I put on a dress! I put on mascara! I’d meant to straighten my hair (or at the very least, work through some tangle-curls) but ran out of time. I felt car-sick on the way to the restaurant and we almost had to pull over. Then the walk from the parking garage almost did me in. The service was super duper slow and I snapped at the waitress that I needed water NOW. I was just weak and miserable and my French toast (late, and cold btw) was unappealing. I gave away my bacon. The worst part was I felt like a terrible hostess. I just didn’t have the energy to keep the conversation going. I sat at the end of the table and wished I was home in bed. The looks on my family’s faces as they saw me struggling through the meal was sort of heartbreaking. I feel like I let everyone down.

Show me your war face!

Show me your war face!

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That’s when I knew: I am a huge wimp. I know some people spring up from chemo and go back to the office. They drive their kids to activities and they put dinner on the table. I am not that woman. I am a pale lump that spends 20 hours a day in bed contemplating my choices:

  • Will drinking a couple swallows of water trigger a Bathroom Event?
  • Is my headache due to caffeine withdrawal? Caffeine will bring on heartburn and I can’t have that.
  • My bones ache, but I took extra-strength Tylenol one day and spent the entire night with a heating pad on my gut for the stomach pain. Do I dare dip into my remaining Percocets?
  • I’d really REALLY love a good night’s sleep, but if I call my doctor and ask for something will he think I’m a drug-seeker and put me on the naughty list?
  • How did I become such a goddamn wuss?
Trending Upward

The good news is that I think the worst has passed! Sunday night I ate soup. I’ve learned what will trigger the killer heartburn (caffeine, orange juice, carbonated drinks) and avoid it. Monday I ate two meals of actual food (both lovingly prepared by my sweet and patient husband who has really gotten more than he bargained for with that “sickness and health” vow) and felt stronger. Last night I broke down and popped a Percocet and got a refreshing sleep. I actually woke up before the alarm, got out of bed and got Allison off to school. Right now, I’m sitting upright at my desk in my office writing this blog post. This is a definite improvement.

Small update

It’s been a couple of days since my first round of chemo, so I thought I’d check in. First of all, it’s not so bad. The nausea is on par with morning sickness, which I know I can get through. The heartburn was a surprise, but Zantac is keeping it under control. 

Mostly, it’s fatigue. Not like oh I stayed up too late and could use a nap, but like full body weariness. My knees are weak and the thought of doing anything physical fills me with overwhelming blerg. As I told my husband this morning: “I feel like I’m made out of butter.”

Which is all much better than the shivering pale head-in-the-toilet creature that I was afraid of. I think I can do this!

Chemotherapy 1 of 6 – The Toxic Bride

Yeah, I wish!

Yeah, I wish!

Well, I did it! Got through my very first chemo session! Honestly, it was a breeze. The first one was long (5 hours), since I had to do long doses of my targeted therapy (Perjeta and Herceptin) for the HER2+ flavor of my cancer. But the next five rounds will only be 3 hours each.

Basically, I sat in a recliner and slept, played games, snacked, and read a little. It was like flying business class to NYC except I ended up where I started.

Here’s how it went down:

First, I met with Dr. Cap and he was disappointed that we didn’t yet have the pathology report for the MRI-guided biopsy I had the day before. He called the lab and they weren’t ready. Then he got on the phone and conferred with my surgeon (Who needs a new nickname. He’s so much more than “Boobcutter”). They agree that it was okay to go ahead and start treatment now. What’s in my left boob didn’t set off the PET scan, so it could be a pre-cancerous duct or something that we’d just keep an eye on. There’s a tiny clip in there now, so they’ll know where to look in the future. (This brings my shrapnel count to three: one in Turdy the main tumor in my right boob, one in Son of Turdy the ginormous malignant lymph node in my right armpit, and now this left boob business.)

Anyway, Dr. Cap isn’t happy with my iron levels and he wants me to take iron supplements.

“Yeah, but then I might not poop,” I say.
“Well, the diarrhea from the chemo will probably balance that out.” He grins.

Gunny and I wore pins!

Gunny and I wore pins!

Cleared for take-off I choose the best chair in the infusion suite. Off in the corner, next to the windows, across from the blanket warmer. One of the chemo nurses “accessed my port” to start the IV. This was by far the most painful bit of the entire cancer carnival so far. I think I mentioned that I have an extra-thick collarbone and my surgeon had to go pretty deep to get the central line connected. Anyway, the needle she started with was too short, and she thought she could get it to connect better if she pushed down on my chest. It felt like being stomped on by a horse. I only had that surgery ten days ago, lady! Easy! So she gets a longer needle and it worked fine and I chilled out.

She waited patiently while I took my round 1 selfie.

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And then the party began. First bag was a cocktail of anti-nausea medication and steroids. Then came the Benadryl. Luckily my husband was still there at that point because a nurse came around to set up appointments for the Neulasta shot (which stimulates bone marrow to produce white blood cells), a blood draw, and Round 2. I was pretty loopy by then and Gunny handled the appointment-setting. Then he went off to watch the new Avengers movie for the second time so I could nap.

My chemo nurse swapped the Benadryl bag for an hour’s worth of Perjeta. This is the HER2+ killer that still has new-car smell. It’s sort of companion treatment to Herceptin and makes it work harder and more effectively.

I listened to the Great Gatsby soundtrack on my iPod and slept for about an hour.

When I woke up it was time for 90 minutes of Herceptin. This is the shit that is going to save my life. If you want an entertaining look at the discovery of this wonderdrug, watch Living Proof. It stars Harry Connick Jr as Dr. Dennis Slamon who is a hero much more impressive than Iron Man or even my beloved Thor. It has a semi-dippy “Let’s put on lipstick before our cancer drug trial” montage (It IS a Lifetime movie) but it’s otherwise great. Inspiring.

I spent most of this time on my phone keeping up with what I can only describe as the most monumentally awesome thing a person could have happen to them. One of my friends, Kari Toyama (who is just a stellar human being as well as being cool as hell) spearheaded a campaign to have friends post selfies and signs with the hashtag #lovetrixiefuckcancer. So all day I was inundated with more love and support and laughter than I could ever have imagined. Take a look:

kari ToyamaMichelle Obama Shannon I don't always desktop battle wonder jbb Steve Morgan desktop awesome drawing batle Kitty Match Made in Halo puppies! Groot Kristin JVB Max D JamMarcella Dirty Diva Nikki Lexi Kiki Nelly Cory Mom Katie Tara Tyler Philip Josephine Carolyn Kathleen Trisha Angel and Alex Doc Sam Hollywood sign The Boss Alison

I have some un-fun remnants of working in the video game industry, but THIS, my god. THESE PEOPLE are the gift of those years. Kari said to me “PSH it was nothing.” I’m sure you’ll agree that nothing could be further from the truth. It was EVERYTHING.

A glimpse at my Twitter feed yesterday.

A glimpse at my Twitter feed yesterday.

Go ahead and blow your nose and wipe those tears. I’ll wait.

After my targeted HER2 antibody drugs, it was time for the heavy duty shit. The actual chemotherapy. One hour each of Taxotere and Carboplatin. I ate half a peanut butter sandwich and drank water. Oh, and some Swedish Fish. My husband returned from the movies and I started reading a book my friend Kim recommended: A Kind Worth Killing.

This precious thing is Allie the Feel-Better Fairy. Thanks to my dear friend Nori. <3

This precious thing is Allie the Feel-Better Fairy. Thanks to my dear friend Nori. <3

And then, it was over. I got home in time to meet my baby at the bus stop. I was kinda worn out, and lounged in bed and read. Not much appetite for dinner, but I did my best. I had an ice cream sandwich for dessert.

So here’s a couple things I learned about chemo that I didn’t know before:

1. You are allowed to pee! They can unplug your IV from the wall and you can run on battery power and shuffle your ass to the potty hauling your drugs on a pole. Comes in handy when they’re filling you full of liquids.

2. For a couple days post chemo, you are TOXIC. All of your bodily fluids contain chemo drugs and you don’t want anyone to get any on them. What does this mean? If I have night sweat, I gotta sleep alone. After using the toilet I have to shut the lid and flush twice. TWICE! I feel like I’m murdering the Earth! The most surprising though? NO SEX. Kinda wish they’d warned me about that one the night before so I could store up. But yeah, the chemo nurse said no sex at all for a few days and no unprotected sex for about 8 days. WHO KNEW? Talk about unfuckable!

So how is my toxic ass doing today? Not bad. I felt a little bit queasy when I woke up, so I got up, popped a Zofran and went back to bed. My chemo nurse (and also the amazing Ann who blogs at Breast Cancer? But Doctor I hate Pink and wrote this super helpful Top Four Tips for Getting Through Chemo post) both said to take meds at the first twinge of queaze, so I did. Thanks, ladies!

I went to the hospital this morning for my Neulasta shot. It can cause bone pain, so they have you take Claritin (yes,

I told her she was like our beloved Seahawks quarterback Russell Wilson when he does his weekly visits to Children's Hospital.

I told her she was like our beloved Seahawks quarterback Russell Wilson when he does his weekly visits to Children’s Hospital.

the OTC allergy drug!) beforehand. My daughter came with us to see the place Mommy goes to get her medicine and everyone smiled to see her. She says it’s not scary and she wants to go back. We’ll see.

Next up is a blood draw on May 15 to make sure my white counts are okay. It was really sad yesterday to see a woman come in for her chemo all sassy and joking around only to be sent home for low white counts.

Then, Round 2 happens May 26.

In the meantime, I’m hanging in there. I’m still riding the steriod high that kinda props you up the first couple of days, and have heard that days 4-7 are the worst. I will keep you updated, and I’m not going to be polite. For now, I await the coin flip: which will come first, puking or diarrhea, or BOTH?

Thank you for all the love and support!

Good news and the cost of cancer

First of all. MY  PET SCAN IS CLEAR! aka there are no signs that the cancer has spread to any other organs. It’s still there in my boob and lymph nodes but I’ll tell you what–if you want one cancery boob to seem as delightful as Thor in a G-string, spend a a few days pondering a stage IV situation.

Thor_DarkW

So,  yeah. I’m doing the happy dance right now. And I have to give massived kudos to my oncologist Dr. Cappuccino (who henceforth will be known simply as “Dr. Cap” for Captain America because he’s going to save my life) for sending me a message at 11pm last night to let me know the good news. Let me set the scene for you: After coming home from the PET scan, I pretty much went to bed. I was too worried and freaked out to function at all. I know that sounds dramatic, but aside from the BRCA-negative, I have flunked every test I have taken on this journey. This week I read two accounts of women who started with my exact flavor of breast cancer (ER+/PR-/HER2+) and were relieved it was caught early and did everything they were supposed to…and yet. Their cancer spread and they’re dying.

So I’m in my bed. The house is quiet. My husband is snoring beside me and the cat is sleeping on my knees. I can’t sleep because my mind won’t stop spinning horror scenarios. I’m telling myself “If I can just live another 10 years the kids will be okay. They’ll be 33, 29, and 15 and they’ll miss me, but they won’t need me.” I’m pondering getting up to take a Tylenol PM, but don’t want to disturb the cat. I mess around with my phone and I see from an email that I have a new test result. I’m not waiting on anything except the PET scan and I quickly log in to read this message:

Hi,
Pet scan does NOT suggest any areas of cancer spread outside the breast region.

– Dr. Cap

I shake my husband awake. “Honey, honey. It’s clear. The PET scan is clear!” I shove my phone in his sleepy face.

And there was much rejoicing. rejoicing

So, now back to the task of kicking this cancer to the curb. I have a post-op appointment tomorrow so Dr. Boobcutter can check my Mediport (which itches like a motherfucker, which I guess means it’s healing?), then the MRI-guided biopsy on my left boob on Monday, then chemo begins Tuesday May 5.

tequila IV

I’ve talked about insurance and approvals and such, but I haven’t really mentioned the costs of the care I’ve been getting. Let me be crystal clear, I am not complaining. I’ve paid very little out of pocket and Tricare has approved every single thing my medical team has submitted. But let’s take a look at the cost of breast cancer for JUST ONE WEEK:

  • April 22 – ultrasound guided biopsy of lymph nodes – $4,151.22
  • April 23 – surgery to install Mediport – $17,264.98
  • April 23 – anesthesia for surgery – $949.74
  • April 24 – echocardiogram – $2,166.00
  • April 29 – PET scan – $5,050.50

scrooge mcduck moneyThat’s almost 30k in one week! And I haven’t even started treatment yet!

Lymph Nodes, PET Scans, and Lies

breast_stageIIb_large2I wanted to write this post last week, but was feeling too Percocet-y. And now I find that I am reluctant to put words to it. I don’t have any especially staggering news to report. As expected, the cancer has spread to my lymph nodes. Four of them, according to Buffy the Cancer Slayer. Which is a weird thing because if it was three lymph nodes, I’m safely still in Stage 2, albeit I get a slight bump from 2A to 2B.

With four bad nodes though, I may be upgraded to Stage 3. No one with any authority has re-staged my cancer, but I’ve spent quite a bit of time consulting my books and the almighty Internet. Honestly, the stage isn’t going to make a difference in my treatment (I don’t think) because we’re starting with the big guns (chemotherapy) in the first place. Will it be more likely that I have a mastectomy than a lumpectomy? I don’t know, honestly. I guess some of that will depend on what, if anything, shows up in my left boob, which hopefully will have an MRI-guided biopsy this week. And if we’re tracking the fucks I give, I have none to spare for my rack. The ladies served me well and I’m totally okay with being rid of them if it keeps me alive longer.

I’m rambling, I know. Here’s what’s gone down since my last post:

Two days post Mediport surgery.

Two days post Mediport surgery.

Thursday I had surgery to install the “power port” in my chest. I was given the choice between “twilight” anesthesia or “knock me the fuck out” anesthesia and I selected door number two. Boy was I glad I did, because a forty minute procedure ended up taking two hours. Apparently I have a very robust collarbone and so Dr. Boobcutter had to dig around quite a bit to find a good path to my vein. Anyway, I guess all went well. I went home that afternoon with an ice pack and a Percocet prescription and a sleepy head. For the next twelve hours I felt dopey and headachey and kinda barfy. And I’d only been home an hour before Buffy called to give me the word on my stupid lymph nodes.

Dr Cappuccino, my oncologist called just a little bit after that. He said that he and Buffy and Dr. Boobcutter had been conferring and they’d decided that I should push back chemo a few days so that we could get that MRI-guided biopsy on my left boob and a PET scan. He said that some other people were pushing for a bone scan as well, but he was on the fence on that and thought the PET would be enough to see what’s what. “Hang in there,” he said. “We’ll get you through this.”

That afternoon at school my daughter was crying on the playground so her friend Jasmine took her to the “recess lady” who, when my daughter sobbed “My mom has cancer!” took her to the school counselor. There she got some stickers and drew this picture.

It says "Cancer is 1,000 pieces of poops."

It says “Cancer is 1,000 pieces of poops.”

Is it weird that I didn’t get a call from the school? Is my kid high-maintenance? When she cried again that night “I wish you never had cancer!” I decided that I’m out of my depth on this one. I left a message with the oncology social worker to see if there is a support group or a therapist I should be sending her to.

Friday I spent most of the day in bed except for a trip back to the hospital for my baseline echocardiogram. The drugs in my chemo cocktail that target the HER2 antibodies are known to play a bit fast and loose with the left ventricle, so we needed to check mine out so we can track any damage (which is temporary in the majority of people). So of course, I’m sitting there thinking…every fucking thing they’ve checked (minus my DNA, which does NOT have the breast cancer gene!) has been bad news. So I’m like “does my heart look normal, ha ha?” And the tech of course isn’t able to make a diagnosis–only the doctor can do that. So that freaks me out and  I become the Liz Lemon of the echocardiogram. “Hey look, Gunny, I DO have a heart!” “Is that my aorta or the sarlacc pit?” Ba dum tish.

sarlacc-pit

Then all weekend I looked up stats about how that one extra node effects my prognosis. And I get shit like this.

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Five year survivalWhat do I believe? Who do I trust? Am I being alarmist? Probably. But there’s enough concern to look at the rest of my body for more cancer.

So last night my son was over for dinner, milkshakes and Game of Thrones. And when the show was over and he was getting ready to leave we were chatting and I tell him chemo now is going to start on May 5 [insert joke about tequila in the IV for Cinco de Mayo] and he laughs and I follow with “Of course, that’s because they found more cancer and I have to get a PET scan har har.” And Allison, who is clinging to her brother’s leg like a tick–and who I apparently failed to notice–says “They found more cancer?”

“No,” I said. “No, I was just kidding.”

What stage of cancer involves lying to your kids?

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.

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