Trixieland

words about words

Archive for the tag “nausea”

03 Nov 2015
5 Comments

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.

Advertisements
Posted by trixie360 in Cancer and tagged , , , , , , , , , , ,
07 Aug 2015
7 Comments

Chemotherapy 5 of 6 – The Darkness Before Dawn

high-five2Five rounds of chemo down, just one left. It’s a triumph, yes? But, wow….this is a bad one. Here’s the thing: actually getting the infusion of drugs isn’t bad at all. They puncture my flesh exactly once to access the mediport in my chest and then it’s all okay. They draw blood to make sure I’m healthy enough for chemo, and I go see Dr. Cap while we wait for results. For Round 5 I was all dolled up in this fabulous new wig that my dear friend (and cancer survivor) Lisa sent me from New Orleans. I was feeling good, I was feeling on top of the world. My daughter Callahan went with me and my baby brother came by for an hour or so. I’d even brought a butter and brie on a baguette sammy from Belle Pastry in Redmond. I also brought two dozen chocolate macarons for the staff.

I reluctantly told Dr. Cap that neither of the new meds (Prilosec for heartburn and Scopolomine patches for nausea) worked. “I’m not trying to be a pain in the ass,” I told him. He insists I’m not a pain in the ass, which if you know me, reveals his true superhero status. He asked if I’d tried acupuncture. He’d given me the card of a person who specializes in acupuncture for chemo patients during the last visit, but it had apparently flown out of my head as so many things have. So, I still have that left to try.

He also told me that he was adjusting my dosage–lowering it by 5%–to compensate for the weight I’ve lost. I lost weight (and probably it’s mostly muscle) because I’ve been unable to eat. It’s not some accomplishment of mine, so I can’t either take credit for it or be proud, but I won’t pretend I’m not slightly thrilled. I can see my ribs again. I have cheekbones. I cannot recommend chemo as a weight-loss method, but…it’s definitely a Cancer Perk.

Chemo round 5 selfieBesides the rad new wig, I wore a t-shirt and skirt and my cute Coach sandals that I spent too much money on the last time I was in NYC but have given me total return on investment in happiness and compliments. A woman accompanying her husband to treatment told me, “Look at you and your hair and your outfit. You’re gorgeous!” “Well, you’re my new favorite person,” I said. “I’d be here in sweatpants with no makeup if I wasn’t taking an official Round 5 selfie,” I joked. Also completely true.

Across, on the other side of the suite I saw a woman in for her very first round of chemo. She was alone and she was afraid. It was sinking in, the reality of what she was up against. I saw her cringing as they accessed her brand-new medi-port. That shit sucks big-time. I told her that this first time is the worst and that it gets way better. I told her that chemo goes fast and that I was on my fifth. She smiled weakly and told me I looked great. I wished I could go sit next to her and hold her hand, but I was plugged into my own business on the other side of the room. I don’t know what kind of cancer she has or what stage it is, but no one should have to go to their first treatment alone. If anyone tries to tell you it’s okay, they’ll be fine, don’t believe them. If they won’t accept a ride, show the fuck up and surprise them. Cancer, for all the good intentions and sweet gestures, love of friends and family and care of doctors and nurses is fucking lonely. Really lonely. And the only people who really get it are people who have been through it or are going through it. Anyway, her chemo was over before mine and before she left I wrote my name, phone number, email address and blog URL on a piece of paper with a note inviting her to call me or text me day or night if she needed someone to talk to. She hasn’t used it, and frankly I probably wouldn’t in her place, but I felt compelled to do it, as so many many women have reached out to me. I feel very strongly about paying forward the kindness that has been extended to me in the last few months. And that’s got me thinking some pretty big thinks about how I want to spend my life. But that’s another blog post.

So, after the first-timer had left the infusion suite and I settled in with my final bag of healing poison, I realized that I had given her the wrong URL. Of my own goddamn blog. I know exactly why, too. It’s CHEMO BRAIN.

031011_NF_FEAT_AbsentMinded_feat4This is something that doctors don’t really talk about. Probably because it’s hard to quantify. But people who have been through chemo will tell you: the struggle is real. At first it’s sort of funny. You know, in an absent minded professor kind of way. “Derp derp, where are my keys? Oh! They’re in my hand!” Cue laugh track. But then, after accumulating all these killer drugs in your system? It stops being funny at all. Sure, I wander into the kitchen and forget why I went there. I lose my phone several times a day (And pinging your phone from your Apple Watch is worth the price of the device in my opinion), but lots of people do that. Struggling to remember the correct word when I speak happens a few times a day. It’s very frustrating. The other day I got panicky because I couldn’t find my brand-new glasses that I’d just spent a fuckload of money on because I love my optometrist more than I love being in-network. I know I took them to Disneyland, and had a terrible thought that I’d left them on the table between the beds in the hotel room. I didn’t have my contacts in, which didn’t help my seeking endeavors, but I pawed through the backpack I’d taken to Disney and the little bag I’d used at the park. No glasses. I wander around the apartment asking my husband and daughters if they’ve seen my new, white, glasses case. Or failing that my old glasses to assist me in my search. Everyone says soothing things, “It’s okay, we’ll find them. Why don’t you sit down and we’ll look for you?” I’m almost in tears because I can’t see and I’ve lost my expensive, beautiful new glasses and I’m fucking stupid and useless. Gunny found them in my backpack. The one I’d just searched. “But I LOOKED there,” I told him, blinking back tears. “Sweetie, I know, but that’s why I looked again. You have chemo brain. It’s not your fault.”

And finally this.

IMG_2625On Tuesday I took my daughter to her summer day camp at the daycare she attended when she was younger. Then, I went to the bakery to order a pie for a Jon Stewart farewell party. As I came out of the bakery feeling all YEAH I’M PRODUCTIVE! GETTIN’ SHIT DONE! I see white paint on my car. And my heart just sank. Because I know I did it. But I don’t remember doing it. And I probably wasn’t aware of doing it at the time. It’s not car paint, so I obviously cut it too close pulling out of or into some parking place next to a wall or a post. Remember last round when I wondered if I was okay to drive? Apparently I am not. My situational awareness just isn’t what it needs to be. And so I’m not going to drive for a while. Which makes me feel like a fucking invalid.

wood sage sea saltAnyway. Round 5 is the worst yet. I had hopes that because the dose is a smidge lower maybe it would be better. And I had lunch with friends the day after chemo and the food still tasted good whereas the gross taste kicked in on Day Two last round. On Day Three I took my littlest to her swimming class and then took her to Kohl’s and then Target so she could pick out some new shoes and jammies (hellooooo summer growth spurt!). So I was feeling optimistic. But then Day Four hit really really hard. And hasn’t let up much. The nausea, I’d say, is ten times worse this round. And the extreme sensitivity to smells is 50 times worse. What I refer to as my Super Sniffer has driven me to spend entire days in my bedroom with the door closed, window open and fan running because someone cooked eggs in the kitchen. I’ve even tried putting perfume on my upper lip so I smell wood sage and sea salt instead of whatever makes me want to puke. It’s mostly food smells, but today I was repelled by the dishwasher detergent. It’s Day Eight. I should be a little bit better by now. I can’t even stomach chicken broth. I don’t feel hungry, but I imagine my body needs more than the 110 calorie pudding cup I can choke down occasionally. (Just tried it. Nope. Not gonna work today.)

Soooo, that’s all shitty.

Here are some not-shitty things. In fact, they are pretty awesome.

1. My dear friend Danny Pena (known online as “Godfree”) was recently inducted into the Podcasting Hall of Fame for his trailblazing work on Gamertag Radio. It’s a big damn deal. What tore me up though? He dedicated it to me in an emotional acceptance speech that made me cry a million tears. You can watch the video here, but grab a tissue! If you ever think you haven’t influenced people in your life, or that folks don’t really care about you, get cancer. Or you can just take my word for it: you matter and people love you. You don’t need to test it. My deepest thanks to Danny and congratulations on your badass award!!!

Godfree speech

2. This conversation with Allison, age 6:

She’s petting my bald head and giving me some sweet little kisses.

Allison: Hey! I think your hair is growing back! I see tiny baby hairs!

Me: You do?!

Allison: They’re gray.

Like I say, she keeps me grounded.

3. My friend Denise and her family donated to the Susan G. Koman Breast Cancer Foundation in my name. She’s also given me other gifts (including matching mother-daughter Elsa hats!) because she’s incredibly sweet and generous but this was especially touching because it helps people. It makes progress. People will live longer and suffer less.

Allie in the Jeep

4. My husband’s Jeep. I spend a lot of time in my bed by myself feeling shitty. But sometimes–more often since we decided that I shouldn’t get behind the wheel right now–Gunny takes me for a ride in his new Jeep Rubicon with the top down and he puts E Street Radio on the satellite station. I know the Boss isn’t his favorite, but he does it for me. And with the summer sun blazing I yellsing all the Bruce songs. The real fan ones. The gritty stuff. I’m talking “Jungleland” and “Hard to Be A Saint in the City”…the real shit not radio jingles like “Dancing in the Dark” which Bruce himself now calls “disco.” And I’m as full-up with joy as I’ve ever been, belting out every single word, the wind snatching the lyrics from my wide open mouth and flinging them into the road behind us. I’m a Springsteen song. What else could you ever ask for?

 

 

Posted by trixie360 in Cancer and tagged , , , , , , , , , , ,
06 Jul 2015
6 Comments

What To Do About the Boobs

shehulk1First of all, this round of chemo can kiss my ass. Just in the last couple of days have I been able to eat meals, and it’s time to do chemo again. As each round gets progressively shittier, I will not be surprised if the awful nausea/gross taste lasts the full three weeks between rounds. Pissed and disappointed, but not surprised.

I also have two new side effects:

1. My thumbnails are doing this.

FullSizeRender (5) FullSizeRender (4)Some chemo patients lose their nails entirely. I’m hoping that doesn’t happen, but I also thought I might be spared this side effect.

2. Neuropathy. At least I think that’s what this burning itchy feeling is on my hands. It’s not constant, thankfully, but it sometimes wakes me up at night. What freaks me out about this side effect is that it can be permanent.

So that’s the sucky stuff. Here’s the good news: In my last post I fretted about what to do with my boobs. This past week I met with my breast surgeon, Dr. Superman (formerly known as Dr. Boobcutter) and I have a lot more clarity now. He assured me that “cutting everything off” will not statistically improve my survival rate, but if it will give me peace of mind, he will do it. He also, regarding my “one boob that’s a wonder of science and one that’s had three kids” concern, told me that if I had a mastectomy on the right breast, when they did reconstruction they’d do a little perk-up on the left breast and get them as symmetrical as possible. So that made me feel better.

What the plan is, though, is to start with a lumpectomy. On examining the bad boob, Supe was unable to feel any sign of Turdy the tumor! He said he’s “thrilled” with the chemo. So all he’ll have to remove is the little metal clip that Dr. Moviestar put in when he did the original biopsy. He’ll take that plus some surrounding tissue. It will most likely be a small enough amount that while Right Boob will have a scar, it won’t be the ginormous shark bite disfigurement I was imagining.

Turdy melting

The pathologist will examine this tissue and look for any microscopic cancer cells that may have escaped. What we’re looking for are “clean margins” aka no bad cells in the tissue around where Turdy used to live. If the margins aren’t clear, then we may go back and do the mastectomy after all.

Here’s the stinky part: After Dr. Supe consulted with Dr. Cap, they decided that because I have those four bad lymph nodes under my arm, I will also need to have a sentinel node dissection. They are going to–brace yourself–inject a radioactive tracer into my areola. Yes, boys, that’s Nipple City.

sentinelHopefully, I will already be knocked out for the surgery when it’s Tracer Time? Anyway, the tracer will flow to the lymph nodes and Dr. Supe will run a wand with a Geiger counter over my armpit and see which nodes react to the tracer. Those are the nodes that he’ll remove because they are most likely to have cancer cells. It’s a better option than taking all of them out and checking each for cancer. I can’t help but wonder if a radioactive boob will trigger a metamorphosis from part-time bitch into full-time She-Hulk.

I told Dr. Supe that I wanted to do everything possible to prevent a recurrence. And he told me that with HER2+ cancer, the most critical time is the first five years. With other flavors of breast cancer I guess it can come back within 15 years, but with HER2+, as he put it, “If we go five years without a recurrence, you come back to my office and we’ll drink champagne.”

Deal.

So here’s the tentative schedule:

  • Round 4 chemo July 9
  • Round 5 July 30
  • FINAL round of chemo Aug 20!!!
  • Lumpectomy and sentinel node dissection the week of Sept 7
  • Start radiation (5x week for 5-7 weeks is standard) first week of Oct

And then? I should be done.

Posted by trixie360 in Cancer and tagged , , , , , , , , , , , , , , , , , , ,
22 Jun 2015
15 Comments

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.

11400999_10152966113497616_7606203820221400357_n

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!

Posted by trixie360 in Cancer and tagged , , , , ,
01 Jun 2015
9 Comments

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.

Posted by trixie360 in Cancer and tagged , , , , , , , , , , , , , , , ,
12 May 2015
15 Comments

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.

Posted by trixie360 in Cancer and tagged , , , , , , , , , , , , ,

Post Navigation

%d bloggers like this: