Radiation: The Dirty Dozen

I had my 13th radiation session today, but “dirty dozen” is much more clickable than “baker’s dozen,” don’t you think?

I met with Dr. Spiderman on Friday (the day after Thanksgiving) and he asked me, “So, how is radiation going? Is it better or worse than you thought it would be?” And I told him it’s much better. That I’m not really getting the fatigue I’d heard about, and the skin that’s being radiated looks exactly the same as the other, non-zapped side. Spidey, resplendent in a fuchsia button-down shirt, said, “Fine. Be that way.”

I joked back, “Are you sure the machine is plugged in?”

Just in the last couple of days have I started to feel tired. Like fall-asleep-on-the-couch-before-dinner tired. I don’t know if it’s the radiation, but it probably is. I haven’t been keeping track of my protein intake at all, and it’s supposed to be 60-90 grams per day. My appetite has been rather crappy, in fact. And speaking of crap…yep, it’s still cha-cha-cha all day err day. Not sure wtf I’m talking about? Click here. I’m not even sure I care all that much anymore. It’s just the way it is.

cha cha cha

Hair update: It’s fuzzy and dark! It looks like hair!

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102 days post-chemo

Meanwhile, it’s the holiday season! I’m trying to be super excited, like when I was a kid, but I don’t think it’s possible as an adult. We had a wonderful Thanksgiving dinner at Snoqualmie Lodge, but driving back I was missing the old days when we (my mom, dad, brother and I) would go to my uncle’s house. We didn’t go home after the meal, but played board games and watched football and told stupid jokes until it was time for pie. Of course a couple sets of divorce and kids growing up changed all that, but each holiday I feel like something’s not quite right. Yes, some of the magic was recaptured when I had kids, and having a small person in the house who still completely believes in Santa and flying reindeer is about as good as it gets in Adult World. But I’m always unsatisfied on some level. Maybe everyone feels that way when they grow up?

This year, cancer and midlife crisis and my natural melancholy personality are combining to make…not Captain Planet, but something much worse. Let’s call it Captain Blah. And I feel guilty because there’s this expectation that I should be particularly hashtag blessed to have another Christmas with my family. And I AM, but…it’s just the same old shit. The same getting and spending. The same search for a ‘wow’ gift that the recipient will shove in a closet somewhere. I move a mountain of plastic garbage from the store to plastic bags to stockings and boxes (and eventually into a landfill). I organize the family into some kind of gathering and half-hearted gifts are exchanged and I get the feeling that no one really wants to be there; they’re just going through the motions because it’s what you do. Or they’re humoring me. Have I been forcing my desperate Christmas on my kids and parents all this time? I think I may have. The whole thing feels phony and wasteful, but I still try really REALLY hard to get into the twinkle lights and the music and the peppermint/pinetree holidaygasm. Does anyone over the age of 10 have magical Christmasses anymore? Are we all faking it? I’m not going to stop doing it, but I guess I’m just wondering if I’m alone in my Grinchdom.

Christmas isn’t the only thing I’ve been angsting over. Spending time in the city I grew up in (because that’s where I get treatment) has led me to drive past my old high school (remodeled and unrecognizable), the place I used to line up my quarters to play Donkey Kong (now a vitamin store), the parking lot I learned to drive in (now a –spit between my fingers to ward off the Evil Eye–Wal-Mart). I was even recently near my uncle’s old house where I had so many wonderful childhood holidays. It feels like a lost world. Like a place I can never return. I guess childhood is like that. But then as I was driving past my alma mater I remember that when I was going to school there I would often have the feeling that my life was just a dress rehearsal. Merely a preamble until my ‘real life’ began. I’m not sure when that feeling truly ended, but I know it lasted into my twenties.

Xmas75
Christmas 1975

And now here I am feeling as though my childhood was the real deal and I’m living some inferior reflection. Or something. And it’s difficult for me to engage in this shadow-world. It doesn’t feel quite real. I’m having trouble spotting the small joys because I’m drowning in the hate and violence (and I don’t even watch television news!)

Honestly? I think about death a lot. Every day. Why go back to school, or start a new career if I’m just gonna die? Why do anything for that matter? What, if anything, will matter once I’m gone? Please note: I have no reason to believe that I’m going to die in the near future. I mean,  yeah, I have a better chance of dying from cancer in the next five years than people who haven’t had cancer do, but I have no indication of imminent demise.

Am I happy? No. But am I supposed to be? Whoever came up with the idea that the goal in life is happiness? Human history is a steaming pile of not-happy. What makes us so fucking special that we think food and shelter aren’t good enough? Why are we compelled to gather designer shoes and iGadgets? Why is our grandest ambition to be on fucking TV?

This post kinda went off the rails. Sorry for that. So yeah. Radiation’s going fine. I almost worked on my book today. I’ve been doing a lot of thinking and plotting, which is a good sign. And, lucky me, I have a new writing assistant: the naughtiest kitten in the world. Maybe this should be my new author photo?

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Radiation: First impressions

I had my fifth dose of radiation today. For that, I win an x-ray! I mean a regular x-ray, not the kind that kills potential cancer cells. Apparently this happens every five treatments so they can make sure the positioning is still accurate, etc. Of all of my courses of treatment, radiation is the most mysterious to me. It’s also the…I want to say “scariest” but that’s too strong. It’s more anxiety than fear that I experience. It doesn’t hurt at all, but I think it’s the combination of being awake and alert (as opposed to being unconscious during surgery) and all alone (as opposed to being surrounded by other people during chemo) that sets my mind to pondering just what the hell is going on. Here’s what a typical radiation session looks like:

  1. I arrive at the radiation oncology office and swipe my card to check in. I sit in the waiting room until a tech comes to get me. I’ve never waited longer than five minutes.
  2. I undress from the waist up and put on a hospital gown so that it opens in the front.
  3. The tech asks if I want a warm blanket. I always do. She gets one out of the warmer and follows me into the treatment room/x-ray den/lair of cancer slaying.
  4. I confirm my name and birthdate on a large monitor and lay down on the narrow table. I shrug my arms out of the gown, and put my arms over my head, both hands on a handle behind me. The tech covers me with the warm blanket, leaving my right boob exposed.
  5. A second tech puts a large rubber band around the toes of my shoes to prevent me from jiggling them and moving around.
  6. Together, the techs use the thin cloths under my body to shift my position so that it lines up perfectly. Satisfied that I’m in the right spot, they leave the room.
  7. The room is cold and white. There are faded nature photos on the wall to my left and overhead. The snow-covered mountain to the left is backlit, but I’ve never seen the blossom-covered branches on the ceiling lit up. Soft music is playing. Sometimes it’s jazz. Once it was a strange cover of Journey’s “Faithfully.” These are the moments I have weird thoughts about what if the world ended while I was in here. What if I emerged to find all the people gone? OR, what if Skynet comes online and makes the linear particle accelerator try to kill me? I’m not strapped down, but how the fuck would I know if the beam was toggled from ‘cure cancer’ to ‘terminate’?
  8. The machine starts to hum and grind. It’s doing stuff, but I can’t see anything because it’s underneath me (did i mention the thing I’m lying on is 3 feet off the ground?). I only found out two sessions ago that they are radiating my lymph nodes from the front and back.
  9. The machine is quiet again and I wait. I try not to think about itching my nose or coughing, or that I might need to pee. I hold still and attempt to focus on the snowy mountain. It usually just makes me cold.
  10. The machine hums and clicks. It’s on the move. I’ve been told to keep my face turned to the left (“We don’t want to get your chin!” GET my chin? What now?) so I can’t see it, but the “Imaging Arm” is rising up over the horizon of the table like a cold mechanical dawn. It looms above me at high noon, inches from my face. It comes to rest on my left side, maybe half an inch from my elbow. It hums with menace. I can see the green light grid and my right breast reflected in it. I can clearly identify the slice of boob that’s about to get beamed. It’s sort of like having the Death Star up in my grill, and my tit is poor Alderaan. Destruction_of_Despayre-TEA
  11. The Death Star fires its weapon. The only way I know it’s doing its thing is the noise. It looks and feels like nothing, yet it took me until the fourth session to keep my eyes open.
  12. The Death Star returns to high noon and rises up out of my way and the tech returns to the room to release me from my rubber bands. I get off the table and say “See you tomorrow.”
  13. I put my clothes back on and leave. OR if it’s Friday I see first Nurse Rad and then Dr. Spiderman. They ask me if I have pain and take my temperature, pulse, and blood pressure.

So, as of today I’m one-sixth of the way done with radiation. I don’t see any changes to my skin yet. The nurse told me I probably wouldn’t feel the fatigue for a couple of weeks, and one of my friends who started radiation before me said it took three weeks for her to feel tired. But she didn’t have chemo, so I’m not sure that’s a fair comparison. Anyway, the last couple of days I’ve had moments of extreme fatigue. Not hours of tiredness, just these maybe ten or fifteen minute waves of energy depletion. Kinda like a burst of jet lag, or as if I inadvertently passed through some sort of soul-sucking field. A sinkhole of blah. Walking through a mist laced with NyQuil. It’s weird. I have a head cold too, so maybe it’s not even the radiation. Anyway, if it IS the radiation and just a taste of what’s to come, I’d better do all my Christmas shopping early this year!

FullSizeRender (13)So it’s been three months since my last chemo. My hair is growing back, and I bought a teeny bottle of expensive Bumble & Bumble shampoo that smells like chocolate. It only takes a tiny drop to lather up my whole head.

My guts are still fucked up. The radiation is actually kinda making me hungry and I’ve been pretty good about eating healthy-ish protein. On the other end, the cha-cha-cha is unrelenting. When I had my latest Herceptin infusion last week, on of the nurses said that is really unusual and talked to Dr. Captain America about it. He ordered a test for C. diff, which is a bacteria you can get after using antibiotics. Basically, antibiotics (I had surgery in October, remember) can kill off your good gut flora, and Clostridium difficile moves in. So…yeah. I had to take this plastic tray into the bathroom and fit it on the toilet, attempt to get liquid poo (but not urine!) into it, and then pour it into a sample cup and deliver it to the lab. There was a lot of muttering, cursing, gagging, and then I emerged from the bathroom with a small jar of shitquid (that’s liquid shit) that I’d shrouded with a paper towel. I take it to the lab. They don’t want it because it’s got no sticker. Back to the infusion suite for a sticker, then the lab to drop off the offering.

I get a message from Dr. Cap that night. Negative for C. diff, but it’s okay to take up to EIGHT Imodium each day. Awesome. Also, he wrote, my magnesium is still hella low, so keep taking the supplement. Grr.

I feel guilty that I still feel weak and shitty. I can see the end of the tunnel (I’ll be done with the major cancer treatments by the end of the year), but there’s no light there. I will need to begin my life again, and I’m very fuzzy on what that looks like. My brother asked me a few days ago, “What do you want to be when you grow up?” And though I’ve written about this before, months later I’m even less certain of anything. When you focus so narrowly on just getting through something, arriving at the end is scary. I feel lost, not triumphant.

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.

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.

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