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Archive for the tag “hair loss”

Chemo Tips for Cancer Buddies

cancer_card_by_patchSince I was diagnosed with Breast Cancer in March 2015, three women I know have joined the sisterhood. Two of them found it early enough to get by with surgery plus radiation, but one is about to embark on a few rounds of chemotherapy. She reached out to me for advice and I realized that I actually do have some. And since I’m ostensibly writing this cancer junk for fellow cancer peeps (what? do I call us “patients” “victims” “sufferers”? If you’re currently in treatment are you a “survivor”? What about my friend that beat Stage 2 only to have it metastasize three years later in her lungs, brain, and bones? Is she a “former survivor”? Because you can fight and hold off and delay, but ladies and gents, you don’t survive Stage 4), I do believe it is time to bust out my…

CHEMO TIPS FOR CANCER BUDDIES!

  1. Say goodbye to your hair. Don’t listen to anyone (hi Mom) who suggests “Maybe you won’t lose your hair!”. You’re going to lose it. You can cry about it, you can turn it into a party or you can do both. Most people shave their heads when they reach some point of critical wispyness. It’s a matter of taking charge; of doing instead of being done to. Each of my three kids plus my husband had a go at cutting my hair and then using the clippers. And it was fun. It actually was. I believe it really helped my youngest (age six) deal with the way Mommy’s look was changing. I’d imagined a sobbing breakdown once I got a good look in the mirror, but that didn’t happen. It turns out my skull is rather nicely shaped. My Dad reports that my great-grandmother upon meeting me as a baby declared my head “perfect.” IMG_1884
  2. Embrace the bald. Try out crazy wigs. Enjoy hats. Go straight-up cue ball. 99% of the time I keep covered up so as not to freak people out, but if I need special treatment or consideration somewhere I have absolutely no shame about whipping my hat off. You just don’t say no to Chemo Girl. Also, enjoy the benefits of bald. Take super quick showers! Save money on shampoo, conditioner, unguents and elixirs. Take back all the time you won’t be blow-drying, hot-rolling, or flat-ironing! No more bad hair days, baby!

    Rocking the chrome dome during Round 3

    Rocking the chrome dome during Round 3

  3. Embrace the other bald. Enjoy smooth never-need-shaving legs and armpits (remember the quick showers I promised you?). Two more words: Free Brazilian.
  4. Be selfish. Seriously. You can do no wrong right now because you have cancer. You won the Lottery of Suck so you get to take long naps, avoid housework, bail on social engagements, not sign up for shit at the kids’ school, hog the remote, hog the covers, eat the last cookie, and just let everyone else deal with “stuff.” I mean, don’t be a dick. Just…act like a dude for a few months. (Kidding. Sort of.)
  5. Invest in Imodium and flushable wipes. The chemo-shits are bad, yo. You are going to poop like you have never pooped before and your little butthole is going to beg for mercy. So do yourself a favor and baby your bum. I’m serious about the Imodium, too. Keep some with you at all times.
  6. Don’t go to chemo alone. Remember all those people that offered to help when you announced your cancer? Now is the time to take them up on it. Choose someone to accompany you to each round of chemo. Someone to pick your ass up at home, drive you to the hospital, sit with you and amuse you, and then drive your ass back home. If you’re very popular you can have them do shifts. Chemo takes a long-ass time. I planned to do a bunch of stuff during chemo (sleep, do my nails, read), and ended up doing none of them. I chatted with my friends and the nurses, munched on snacks, played with my phone. You know what? I had a good time. I laughed a lot. Take your friends and host a chemo party.

    Me and Amy. Best friends since 1973!

    Me and Amy. Best friends since 1973!

  7. Be a wuss. Look, for no reason at all you drew the short straw and got cancer. You don’t have to be a tough broad or a good soldier or a warrior woman. All you have to do is GET THROUGH IT and you’re a rock star. So don’t try to keep doing PTA shit when you want to curl in a ball and cry. Curl in a fucking ball, girl. You deserve a good cry! If your heart races and you get the cold sweats changing the sheets on the bed? STOP. Sit the fuck down and let someone else do that shit. You have cancer. Or sleep in dirty sheets, who cares! What’s the worst that can happen–you already have cancer! Honestly, here’s a secret. When you have cancer people are required to be nice to you. They’ll tell you you’re beautiful when you look like a damn gargoyle and they’ll tell you you’re brave when you’re a blubbering puddle of self-pity. People don’t judge the cancer-striken. They just thank fuck it’s not them.
  8. Say goodbye to food. If the nausea don’t get you, the chemo-taste will. Food will, for increasingly long periods of time as your chemo progresses, be the enemy. You won’t want to eat it, smell it, or have anything to do with it. And yet it will become your prime obsession. Because you know you need it to rebuild your good (non-cancery) cells, and you haven’t eaten anything except for a raisin in three days. So all day you will ponder this ponder: What could I eat? What could I choke down? Strolling through the aisles of the grocery store can help here. If something catches your eye, take it home. Take three or four or a dozen “maybes” home and try them. Something that was fine last week might be a no-go this week, so keep trying. Chicken broth and dill pickles were the only thing that kept me alive during the back half of chemo. dill pickles
  9. Find what works for you. Now is not the time to try and “power through” anything. If you hurt, take a pain pill. Your doctor will give you the good ones because people don’t fuck around with cancer patients. If your nausea meds don’t work, try another. Try ginger candy. Try pot. Try acupuncture. And if nothing works, just keep reminding yourself that this is not the rest of your life. Chemo comes to an end.
  10. Make friends with chaos. You’re the one that keeps the trains running, right? Who makes the appointments and keeps the social calendar and is the organizer and the arranger and the scheduler and the cleaner-upper. Well, the trains are going off the rails. People will try to “pitch in.” But your immediate family is suffering too. They aren’t running at full capacity either because they’re worried and trying to be strong and crying when they think you’re not looking. So. Do you want to spend 4 or 6 or 11 rounds of chemo feeling like a failure watching the laundry pile up and the homework get left behind and the mess accumulate everywhere you look? You do not. This is where that laminated Cancer Card comes in. You play it and you play it hard. Mostly, you’ll need to play it on yourself. Your bones ache from the bone-marrow booster shot you got to keep your white count from plummeting. Is this a good time to mop the kitchen floor or scrub toilets? It is not. Sit the fuck down, pull up a blanket or a pet and watch a Law & Order: SVU marathon. You can clean your house when your body isn’t involved in chemical warfare with a deadly disease. smile and nod
  11. Smile and nod. Don’t kill. People are going to suggest things to you that will make your blood boil. That refined sugar gave you cancer and that your penchant for peanut butter cups is tantamount to a deathwish. That supplements or prayer/positive thinking or Corn Nuts are more effective at killing cancer than medicine. That drinking smoothies and eating lean protein will help you feel energetic through chemo–never mind that you can’t drink water without gagging. Don’t argue, don’t punch them. Just smile and nod. They do mean well.
  12. Connect with cancer buddies. Find people who have been through it or are going through it. Because they are the only ones who understand what this feels like. And they aren’t the ones sending you emails about how you gave yourself cancer by drinking soda or living near power lines. They won’t change the subject when you talk about being afraid of dying. You can tell them how you REALLY feel, not just “oh, fine.” They won’t discount your aches and pains or try to “solve” you. They get it. Find these buddies and keep them close. And when you’re past this shit and you’re a “survivor” reach out to the newbs and be there for them.

Next time: Chemo Tips for Family and Friends.

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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.

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:

image

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?

IMG_1815

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.

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.

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