Trixieland

words about words

Chemo – The Halfway Holla

Usually, I’d think about updating the blog and then I’d say, “Well, I’ll wait until I have more energy. Until I feel a little bit better.” But this time, I’m not doing that. I’m going to write this post when I’m at my lowest point because that’s part of cancer too. Not just the “big moments” of shaving your head or your friends cheering you on, or the first round of chemo. I’m talking about the shit in between. That’s what today is about. I had my third round of chemo last Thursday and then a weekend filled with birthday celebrations and wonderful friends. Today I don’t feel like a warrior. I don’t feel like I’m doing battle. I feel weak and useless and yes, a little fragile.

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I’m beginning to suspect that the chemo side effects are cumulative. Like they might get worse with each round. And I further suspect that no one tells you this because it would be too discouraging. Well, I’m going to tell you: this sucks ass. I don’t think I’ve ever felt this bad in my life.

My stomach…oh man. It’s just so unhappy. It’s not that food is unappetizing, it’s that everything–including plain water–tastes absolutely vile. It’s not even nausea anymore, maybe, or I’ve forgotten what it feels like not to feel like shit. The bone pain is the worst it’s ever been, too. Usually I get it in my hips and a hot bath and Tylenol take care of it. This time it just keeps hurting and it’s in my shoulders too.

And the hot flashes from the chemo-induced menopause? Those are fun. Every 15 to 20 minutes ALL NIGHT LONG I wake up and either throw all the blankets off, or put them all back on. And the fatigue? I guess that’s what it is, though it feels more like weakness…it’s overwhelming and I’ve become rather addle-brained in the last few days as well. Today, I nearly walked into the back of a car that was reversing in a parking lot. The most annoying thing is that it’s summer time! I have stuff to do! I want to be out and doing stuff instead of cowering in my bed feeling sorry for myself. I have the girls’ bedroom to redecorate but I can stand up long enough to fold a basket of laundry. And, and, fucking and…

Anyway, this is the view from halfway through chemo. I was really excited to hit that milestone, but it’s getting harder to see a time when all this cancer shit will be behind me. I spent some time speaking with Dr. Cap before chemo last week and we talked a bit about surgery (though he’s not a surgeon) and stuff. I was under the impression that if I had a mastectomy instead of a lumpectomy (remove the whole breast, not just the tumory bit) then I would be spared radiation. But Cap says with this cancer–and because my lymph nodes are involved–we’re throwing the kitchen sink at it.

So I still have to figure out what to do with my boobs. I mean, let’s consider the options: I can have a lumpectomy and hopefully my right boob won’t be too disfigured. I can have a mastectomy and then have reconstruction. But then, like, I have lopsided tits? One that’s a wonder of modern science and one that’s fed three kids? No thanks. What about skipping reconstruction altogether? But what the fuck do I do with one boob? Just for shits and giggles go Google “breast reconstruction after mastectomy” and see how those images grab you.

I told my mom that my strong feeling right now is to lop both troublesome fuckers off and just be flat-chested the rest of my life. She seems to find this mildly horrifying. Maybe because, at 74 years old her rack is still pretty impressive. But I like the idea of wearing tank tops and spaghetti straps. I feel like I’ve been a prisoner of my boobs since the tenth grade and what freedom! But maybe I’m deluding myself.

Then I asked Dr. Cap a question that may be actually deranged. I’m fully expecting this treatment to work and that at the end of this process I will be NED (No Evidence of Disease) aka cancer-free. What concerns me is the possible return of the cancer. Because once you’ve had it, the chances it will come back increase. I asked Dr. Cap, basically, Should I leave a boob for the cancer to get if it wants to come back? So it doesn’t go for my liver or brain or bones? “Because,” I told him, “if it comes back somewhere else, I’m fucked.”

“Well, I wouldn’t say you’re fucked,” Cap said, which tells you how comfortable he’s become with me and my weirdness, But he did allow that in that eventuality we call the cancer incurable but that many women can live ten years with a stage 4 diagnosis. “But, you’re only 46. That probably doesn’t sound that long.”

No. It doesn’t.

How do I make myself as invulnerable as possible? How much piece of mind can I purchase with chunks of my body? Because I’m willing to give whatever it wants. Take my boobs, take my ovaries, take my uterus…I don’t give a shit, I was done with them anyway.

Anyway, I have wonderful people supporting me and pulling for me, and I don’t mean to be a downer or disappoint them. But this is for you, future reader, who maybe feels the same way and then feels guilty about dropping the Go! Fight! Win! pompoms because you feel like ass and just want all of this to go away.

Fuck you, cancer, for ruining my summer!

A Heart, a Mole, and a Limerick

It’s been a sort of eventful (and yet not) couple of weeks. There have been a couple scares, some new side effects, a milestone, some experimentation, and a minor epiphany.

Tasting and Smelling

First, I haven’t quite figured out how to deal with the nausea. It’s much worse this round, but as before, I’m not actually vomiting…I’m just nauseous all the time. Maybe weed would help, but I’m not willing to trade barfy for high at this point. If I were face-down in the toilet I’m sure that option would be more attractive.

Still, it’s very odd. It feels sort of like a mixture of pregnant and hungover. The constant low-level nausea is just there…ever-present like a tiny fetus in my gut. It’s accompanied by an excruciatingly sensitive nose. I can smell everything in exquisite detail and most of it makes me want to yak. And when I say I can smell everything I mean it. I can smell morning breath from across the room. I can smell YOU right now, reading this. I can detect whiffs of the soap you used this morning and the mint you ate after lunch.

Crime LabParadoxically, my sense of taste is completely whackadoo. One evening last week I got a sudden and very strong craving for pizza. Specifically, Canadian bacon and pineapple pizza. Thinking I was turning the corner on my nausea/chemical taste issues, I ordered one for delivery (sans sauce because tomatoes give me heartburn now). I opened wide and took what was meant to be a nearly orgasmic bite. And tasted…nothing. Nada. I haven’t been that disappointed since Santa failed to deliver Crime Lab back in 1970-whatever.

But then there are good surprises as well. Cantaloupe, for instance, which is one of my favorite things to put in my mouth. Cantaloupe has to be just right. The flavor is so subtle that if you have a slight cold you won’t be able to taste it. Or if it’s not quite ripe. I got some cantaloupe the other day with the thought that it probably wouldn’t taste good, but what the hell. I took the first bite and was overwhelmed with sweet flavor. It was the highlight of my day. It was THAT good.

can-dogs-eat-cantaloupe

Mole Hunt

Here’s something that wasn’t good. My youngest, Allison, is blonde. We’re not sure why or how, because everyone else in the family is dark. Some family members were blonde as very small children, but grew out of it. It remains to be seen if Allie will keep her yellow hair or not. My point is that I don’t know what to do with a blonde head and have always been super wary of the sun. Those corn silk locks don’t seem to offer any protection and so I’m hardcore about making her wear a hat in the summer. A couple of years ago I found a large-ish (relative to her four-year-old noggin) mole near her ear and have kept a close watch on it. Last Wednesday while washing her hair I saw what I’ve been dreading: the mole has changed. Where it was once uniform in color and perfectly round, it has suddenly shown all the signs of a potential melanoma.

IMG_1960Basically, my baby’s mole flunked the ABCDE test. Herewith:

  • A – Asymmetry (lopsided is bad)
  • B – Borders (blurry, uneven is bad)
  • C – Color (different shades are bad)
  • D – Diameter (larger than a pencil eraser is bad)
  • E – Evolving (change is bad)

So, Gunny and I resolved to take her to the pediatrician ASAP and put her to bed. Then I opened the freezer to get a popsicle and burst into tears. Those heaving, silent “Don’t mind me, I’m breaking down” sobs. Because cancer can take me, but it better not lay one turdy tendril on my child. Because I will burn this world down.

The pediatrician agreed the mole is “suspicious,” and has referred us to a dermatologist at Seattle Children’s Hospital. Once Tricare approves it, I’m hoping to make the appointment for a Tuesday. Just in case we run into Seahawks quarterback Russell Wilson on his weekly trip to visit sick kids. You gotta find the upside wherever you can.

Side Effects

In honor of some fun new side effects I have composed this limerick:

There once was a lady named Trix
Who found herself in quite a fix
Her gums were receding
Her ass, it was bleeding
And she still has four rounds left of six!

Also, my nose is running in what is lovingly called the “Herceptin drip.” Yaaaaaaaay.

My Heart

In my last post I mentioned that I’d been having some shortness of breath. The next day it concerned me enough to call Dr. Cap’s office. He had me come in and Gunny and I spent two hours there. First, I had two panic attacks before I even saw the doctor. I haven’t had one since, well, I guess since I met Gunny seven years ago, but I used to have them fairly often and once severe enough to land in the ER where the nurses nodded knowingly when I told them I worked at Microsoft. “Oh, we see Microsoft people all the time for this.” Anyway my heart rate was too high for Dr. Cap and he sent me to the lab for a blood draw to check my iron. My iron was fine but my postassium was low. He decided that we’d check on my heart a little sooner than planned so this Monday I had another echocardiogram which was absolutely fine. So my heart is in good shape and I don’t know what the shortness of breath was about and haven’t experienced it since.

My Hair

What about your bald head, Christa? Oh, I’m glad you asked. So here’s something I didn’t expect: my head gets a little bit stubbly every few days. But only in patches. So if I hadn’t shaved my head I would still have hair, but I would also have bald patches, which I think we can all agree would not look very cool.

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I’ve decided I like the idea of wigs more than I enjoy wearing them. So I’ve been going naked-headed most of the time inside the house and rocking some hats out and about. These are the two I like best:

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And now for the good news. At long last, after more than three months, I’ve started working on my novel again! The second Mike Malick mystery You Go To My Head is back on track. I’m not promising a release date yet, but at least the wheels are back in motion. It feels really good to be creating something again.

An Epiphany

That’s sort of my takeaway from the whole cancer experience thus far: being grateful for the small things. The kindness of a friend. A sunny day. The flavor of ripe melon. I’ve discovered that Death doesn’t have to come very close at all to make Life taste very sweet.

How to Write a Quick and Painless Book Review

I review nearly every book I read. But only because the Goodreads app on my phone makes it nearly impossible NOT to select a number of stars when I’m marking a book as complete. As far as a written review? I—probably like most people—only take the trouble when I either love or loathe a book. So, please don’t think I’m up on some high book review horse when I say this because I’m as guilty as everyone else.

Pinup reading

Reviews help readers find books to love and to avoid the stinkers

I’ve nixed dozens of books because someone had pointed out that it was a mess of grammatical and spelling errors and I feel like I dodged a bullet. Ain’t nobody got time for that.

But here’s the other thing: reviews help writers more than you know. The little guys, the big guys, the unknowns, and the darlings of the New York Times. Every writer wants, needs, and loves reviews. Yes, even Jo Rowling and Stephen King want and need your feedback. Because knowing how you feel about their work is what keeps them writing.

We indie authors are especially reliant on the review system. We don’t have a marketing machine to run ads or publicists to book us on talk shows.  The only way anyone is going to consider our work is if they hear about it from a friend or they happen across it in their Amazon browsing. And the more reviews a work has, the higher it will rank in searches.

Here’s the thing: two minutes of your time can make a world of difference in a writer’s life. That’s how long it will take you to review a book. Seriously.

I know, I know what you’re thinking.

But I’m not a good writer

Guess what? You hardly have to type these days. Look how easy Amazon.com makes it for you. Just click some buttons, poke a star and boom!

Super helpful

But I don’t remember everything that happened

So what? No one expects you to summarize the plot. In fact, that’s super annoying in a review.

But I didn’t really like the book

That’s totally okay. Authors appreciate you taking the time to review their book, even if it’s not a glowing endorsement.

But I don’t have a lot to say about the book

No problem, sparky. Your review could be one sentence–or a fragment!–and still let the world know how you feel. Here are some examples of perfectly worthwhile, super short book reviews:

“The detective character made me laugh out loud.”

“I felt like the ending was rushed.”

“Way too much sex.”

“I loved the part in Las Vegas.”

full review

But I can’t think of a headline

Yeah, I hear you on that. But guess what? You can skip it. Just leave it blank and hit “submit” and the world keeps turning. Cool, huh?

Click a few buttons, choose a star, and type a few words. Easy peasy, right?

Here are things to avoid

Personal attacks

“The author is a vengeful slut and couldn’t plot her way out of a paper bag.”

Remove “is a vengeful slut and” and you’ve got yourself a review, cowboy!

“The author’s support of anti-gay campaigns make him a piece of shit”

Be that as it may, that isn’t about the content of his book.

Genre attacks

“I’m not really a Sci-Fi person and all the space stuff and names without vowels really grated on my nerves. There’s no such thing as an anti-gravity grenade!”

“Dragons. What is the deal with dragons? And everyone just walks through the entire book. Hello? BORING?”

If you know you don’t like the genre, don’t rail against the tropes of the genre. It’s like complaining about the heaving bosoms in a Harlequin romance. Which I have totally done.

Spoilers

A customer review on Amazon.com spoiled the ending of Gone Girl for me and I nearly didn’t read it because of that. Don’t be that guy. Just don’t.

So, go ahead and make good on that promise you made to your writer friend (so, so many promises). Take a moment and write a couple pithy phrases about the book you read on the plane. Authors and readers alike will thank you.

Chemo – Round 2 Roundup

Okay, it may be a bit early to call this a “round-up,” but I couldn’t resist the alliteration. I really really need to get back to work on my book. Here’s the pattern that’s emerging with me and chemo:

Day 1: Get chemo. My spirits are good and I feel pretty normal.

Day 2: Go to hospital for Neulasta shot. Maybe do something while I’m out and about (This time I met my brother at the bookstore and we took a twins selfie.)

Twin baldies

Day 3: Get any shit done that needs doing in the morning because energy is going to be in short supply. This time I got my daughter off to school and then went grocery shopping. Then took a two hour nap. Then went to the marijuana store. Slept for another two hours. Cooked dinner. Passed out for the night.

Day 4. Nope. Just nope. Barely got my carcass out of bed. It was like this: Make Allison’s lunch. Lie down for five minutes. Help her pick out clothes and put toothpaste on her toothbrush. Lie down again. I barely got her little butt out the door before I was all done for the day. I got out of bed to use the bathroom and that’s it. For future reference, let’s just write off Day 4.

Day 5. Spent the first half of the day in bed, but emerged in the late afternoon for some social contact. I took a Percocet at bedtime and slept for a glorious 11 hours. It was so so so good. Did I mention glorious?

Day 6. Slept until 10am or so, but remained awake until bedtime!

Day 7. Actually got dressed and put on makeup. I’ve gotten out of the habit of giving a shit about makeup since I started working from home four years ago, but with my head all bald I feel like I have these huge alien eyes that are looking really sad and as if they are pleading with me in the mirror, maybe emitting some sort of plaintive alien sound like “bleep?” So I put stuff on the poor things. All the stuff: concealer, shadow, liner, mascara. I intended to drive up to the elementary school to take Allison her raincoat (weather app said 20% chance of precip and she’s only wearing her Darth Vader hoodie!), but by the time I was dressed I was feeling exhausted and short of breath. That may be the anemia talking, so I should probably take one of those goddamned iron pills Dr. Cap is so keen on.

WEEEEEEEEEEED

So, you’re probably wondering about that trip to the marijuana store, yeah? Here’s what: First of all, recreational pot is legal in Washington state, so I don’t need a prescription or anything. What I could have used is a little research though, because I got the totally wrong thing and the dude behind the counter was as derp as I am. What I purchased was a dropper bottle of marijuana “tincture” for putting under one’s tongue or adding to edibles. Since I’m massively barfy–much more so this time despite having two different meds for nausea (Zofran and Compazine)–I am not interested in edible anything. My thinking was: if these weed-drops make me feel like eating again I will scarf hella brownies no matter what’s in them.

full_spectrum_tinctureThe dosage for the drops was “approximately 10 drops.” The bottle contained four “servings” and cost 45 dollars. I put about 4 drops under my tongue and swallowed. I didn’t get a flavor because all the available varieties would give me heartburn. So it tasted like liquid weed. Then of course I read the instructions and it said to put the drops under your tongue and hold for 60 seconds before swallowing. So I did another 4 or 5 drops. Remember, we’re still in the recommended dose range of 9-10 drops, so don’t get all fluffy with me. Then I got tired and slept for a couple hours. When I woke up, I was stoned. I haven’t actually smoked pot since E3 2007, so I’m practically a newb again. Here’s me, stoned. Squinting and tired. Like my eyes would barely open. I cooked dinner with my eyes at half-mast and wolfed down two servings of pasta and a fudgsicle. And a piece of pie. Then I passed out. So, I’d say it cured my nausea, but it was not worth the squinty-stoner effect.

I’ve come to find out that the variety of weed I used was exactly the wrong thing. For nausea you want something high (hehe) in CBD not THC. But what am I–a weed chemist? I’m not sure I want to try again and will probably give the remainder of my drops to my mom so she can see if it helps her rheumatoid arthritis.

CANCER PERK: If you’re gonna get chemo, do it in the summer! My legs are as smooth as a baby’s ass with zero effort! Hooray for sundresses!

HAIR

The novelty of being bald has pretty much worn off, which is a pity because this is going to be the state of my head for quite a while. If my last chemo is in, say, August, I might start to see baby chick fluff in late September or October. I’m kind of used to being bald around the house, but I put on a hat when I go to the bus stop or when the pizza delivery guy comes to the door so I don’t shock anyone with my chrome dome. My mom came over yesterday to take Allison for a play date and while she’d seen photos of my head on Facebook, this was her first time seeing it in person and while she put on a brave face I could see her heart breaking just a little. I’d feel the same way if it was one of my kids. It’s one of the slides in a PowerPoint of horror that goes through every parent’s head: your kid sick, mangled, molested, missing, dead. That carousel of terrible eventualities that you can never erase.

The good news is that I wore that sassy purple wig on Day 2 and all the ladies at the hospital loved it. So did people at the bookstore. One woman crossed the store to tell me how much she loved the bright color.

STICKER SHOCK Each round of my chemotherapy medicine costs sixty-one thousand dollars!

CANTHER THUCTH

My youngest has been singing a series of songs with a common theme: she hates cancer and it sucks. Normally, I’d probably tell her not to say “sucks” but cancer can kiss my ass. She’s missing her two front teeth so her song is sung with an adorable lisp. Sample lyrics:

Toothless AllisonOh, canther you are the wortht thing in the world
and I hate you tho much.
You are a pieth of poop
and you thmell like thtink.

Now I’m tired again, so I’m going to stop. I’m confident that each day I will feel a little bit more energetic and a little less barfy and I’ll be able to enjoy (or at least make it through) the whirlwind of end-of-school-year events with my Kindergartner.

Chemotherapy 2 of 6 – Getting the Hang of It?

IMG_1934My oncology office is becoming like Cheers for me. I walk in and everyone’s happy to see me. My 19-year-old daughter Callahan accompanied me for my second round of chemo and I’m pleased to report that my master plan to encourage her interest in health care is totally working. She’s registering at Bellevue College in the fall and is interested in a few of their excellent programs. Right now the front runner is Nuclear Medicine Technology. I’m so proud of her and know she will rock that.

I saw Dr. Cap first and we talked about how I was feeling. I told him my weirdness about the nausea getting worse the second week so he decided to add a drug called Emend to my IV, which is supposed to be especially helpful with “delayed nausea.” Side effect =constipation. So maybe it will balance out the poop firehose situation (which actually abated a couple of days ago). He’s not happy with my continued anemia, but is understanding that iron pills don’t do my barfy tummy any favors. He asked me to try to take one every other day and I agreed to ponder that.

I told him I can’t feel the tumor at all and invited him to feel for himself. He said he’d be fine just listening to my heart and lungs. And there you have it folks: for the first time in my life a boy didn’t want to touch my boob. *sad trombone*

Callahan and I settled into the last remaining chemo chair in the infusion suite. It was hoppin’ in there! The downside of the busyness and the extra meds was that we were there for a little over 5 hours which was much longer than expected. Callahan made a Starbucks run and got herself a coffee and a chocolate croissant for me.

Luckily, we got my next chemo scheduled before the Benadryl this time. But just as I started to feel loopy and sleepy my Dad stopped by so I perked up and didn’t nap.

Baldy, Dad, Callahan

Baldy, Dad, Callahan

My next dose is due the same week as Allison’s last day of school picnic and her birthday and party and Father’s Day. So figuring that I’ll feel halfway human for 2-3 days after chemo, I asked Dr. Cap if it was okay to bump it out a couple days and he agreed that wouldn’t mess anything up. So, the next round will be June 18 and hopefully I will be alert and upright and not spewing from any orifice for the big astronaut party on the 20th. Fingers crossed!

So, here’s another thing. I’m totally bald! Once it started falling out and I had Allison cut it shorter, shit went downhill fast.

11107174_10152889424527616_4227576448692282945_nSo, I decided to make the head shaving a family event, piggybacking on our weekly Game of Thrones gathering on Sunday when all the kids are home.

First, the girls each took a side and cut my hair.

11267997_10152891928387616_3802612572269950073_oThen Gunny got the clippers and he, Allison, and Scott all took a turn. And then I looked like this. Grumpy, but kinda badass?

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Then Gunny got his safety razer and shaving cream and made me smooth as a baby’s bum. It’s chilly!

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But I have some Buffs I bought at REI (serendipitously during the Anniversary Sale!) and I now have three fun cheap costume wigs in wild colors.

Three Wigs

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!)

FullSizeRender (4)

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!

IMG_1794

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.

IMG_1759

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!

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