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.

Breast cancer phase 3: Let’s get radiated!

StarfireNow that chemo and surgery are in the “done” pile, it’s time for radiation. What’s getting zapped? My right boob and the lymph nodes in my right armpit. The preparation for this has been sort of fascinating for a nerd like me. First, the radiation nurse educated me on what I can and cannot do while I’m getting radiation treatment. What sunk in is that I can’t use deodorant on the armpit that’s getting zapped. Ew, right? Well, she told me the tale of a non-compliant patient who insisted on using deodorant and his skin “sloughed off.” No pit stick. Check. The other thing is that I have to eat a ton (60-90 grams daily) of protein (Cue shit-eating grin from my husband. Nice try, Gunny) to rebuild the good cells that are going to be dying off from the rads. She said other stuff too. No antioxidants, go easy on green tea, no hot tubs or crazy hot baths/showers. I’ll see her each Friday so she can check on how I’m feeling and make sure there aren’t any early signs of lymphedema.

IMG_3622Next, Dr. Spiderman (the radiation oncologist) and…let’s call her Starfire (the radiation tech) gave me a CT scan while I lay on the table with my arms over my head. They made some measurements and put a sticker with a metal bit inside on each side of me and one in the middle. Then they scanned me and when they were happy with their work Starfire gave me a tiny black dot tattoo on each side.

IMG_3727These are so I can be lined up properly in the same spot each day so what needs radiating gets done and they don’t hit anything that could be dangerous (like my heart or lungs).

Starfire told me that the measurements she took, the CT scans, and Dr. Spiderman’s info about my particular cancer and his prescription for treatment would be handed off to a dosimetrist who would figure out the exact angle and dosage and all that. I’d never heard of such a person, so I looked it up and it’s actually pretty cool.

A week later I went back for more stuff. This time Starfire and another tech took me into the X-ray room to test out the program the dosimetrist had come up with. Make sure his calculations matched up with my human body. This was both super cool and slightly intimidating.

logansrun178As machinery rotated around me and red and green lines projected over my skin I couldn’t help thinking about the rogue laser surgery machine in Logan’s Run.

Goldfinger-laser-sceneOr Goldfinger‘s crotch laser. “Do you expect me to talk?” “No, Mr. Bond. I expect you to die.”

Both the disc-shaped thing and the cafeteria-tray thing that took turns rotating into position above me were slightly reflective, so I could see me and my boob and the red and green lines. Starfire popped in and out of the booth to draw on me. She also gave me one final black dot tattoo. My posture was that of a reclining nude, but with a Tron grid overlay. Weird. I didn’t have my phone, or I’d have captured it. Here’s sort of what it looked like:

This painting by Modigliani just sold for 170 million bucks.
This painting by Modigliani just sold for 170 million bucks.

And here’s what I looked like when they were done:IMG_3725

So, tomorrow the real zapping begins. The beams will only be on me for about 20 seconds. It will take longer to change into a hospital gown than to receive my treatment. I have a new parking pass and a special swipe card for checking in. Nurse Rad says the fatigue usually doesn’t hit for a couple of weeks, and comes not from the radiation itself but as a result of how hard your body must work to repair the cell damage. Sounds to me like the kind of pregnancy tired your body gets from building a human being. And I know I can deal with that. Actually, I feel like chemo set the bar for shit I can deal with. So I’m not afraid of radiation.

In general though, my level of anxiety is pretty ridiculous. I’ve worked myself into some sort of panphobic paralysis. I dread every phone call and email. I live in fear of a knock at the door. I went to see Spectre with Gunny and during the final third I become convinced that a man who had come in late to sit in the handicapped spot was going to pull out a weapon and slaughter us all. I had a vivid dream that I was in a cancer ward in New Orleans and the doctors discovered that I had a fatal case of akomi sarcoma. It was level 6 Hertz, which is really bad so I prepared to make goodbye videos for my children. At some point I realized I was dreaming and made myself remember the name of the new cancer, convinced this was a warning from my subconscious. So I Googled “akomi sarcoma” as soon as I woke up. Of course, it doesn’t exist.

On the more realistic (but barely) side of my anxiety, I am concerned about my liver. I’ve become super sensitive to acetaminophen (I vomit up large doses) and my appetite has tanked recently. There has been no end to the diarrhea situation aside from the two post-surgery Percocet weeks. So then I have this conversation with myself:

Me: I had a PET scan that showed nothing suspicious in my liver!

Myself: Yeah, seven months ago.

Me: I’ve had six rounds of chemo since then.

Myself: Which didn’t get all the cancer in my lymphnode!

Me: Yeah, but… Look, you’re just a freak. Stop.

So am I a hypochondriac now? Because every fucking twinge, bruise, ache, and brainfart makes me go “CANCER!”

Anyway. Here’s an update on my head. Look at all the hair!!!!!!

82 days since last chemo.
82 days since last chemo.

Cancer is full of SCIENCE…and Spiderman.

Now that chemo and surgery are in the “done” pile, it’s time to move on to Phase 3 and plan for Phase 4 of this breast cancer “journey.” That’s so obnoxious, isn’t it? A fucking “journey.” A trip no one wants to take. It’s actually more like being an exile or refugee or something. I’ve been exiled from the land of health and forced to haul my cancery carcass up the Cliffs of Chemo and cross the Strait of Surgery in a leaky rowboat…

Eh, who am I kidding; I have health insurance and live in the Pacific Northwest which is where cancer goes to die. I haven’t done any of this on my own. I’ve been Sherpa’d up the slopes like an entitled heiress, and floated across the water Cleopatra-style.elizabeth-taylor-as-cleopatra-in-cleopatra

Phase 3

What happens in Phase 3 is radiation. For that, I need a radiation oncologist. I met mine last week and although he looks like a young Stephen King I’m going to stick to my theme and call him Dr. Spiderman (No, I won’t be hyphenating that, so get over it now).

Spider Man
Because radiation. Obvi.

We’re going to zap my breast and my lymph nodes with 33 days of high-energy x-rays. So I’ll show up at the hospital every weekday for about six weeks. Each beam of zap will last about 20 seconds and the entire procedure will take about 20 minutes. Spidey says since I have olive skin I may just tan and not burn the way many fair-skinned patients do. Next Tuesday I will go in for a “Radiation Simulation” which apparently includes one hour of “education” and an hour of CT scanning and such (not sure what), so that we zap the right bits. What Spidey and his team are going to do is use the map of my insides to program the big radiation machine (or linear particle accelerator) to zap from angles that don’t hit my heart or any other important junk.

breast_pet_CT_left_sah_radiation

Then shortly after that will be my first date with this bad boy.

linear accelorator

Phase 4 (and the continuation of Phase 1)

Okay, now my phases are getting all confused. Let me try to untangle this. Chemotherapy is over. I started that shit on May 5 and finished my sixth and final round on August 20. But simultaneously with the chemo, I started “targeted therapy” which is the drugs that specifically target the HER2+ aspect of my flavor of cancer. Those drugs are Herceptin and Perjeta. While Perjeta has dropped off the menu, I still get an infusion of Herceptin every 3 weeks, and will continue to get them until May (giving me a full year). This is to make sure the cancer doesn’t recur. The good part of this is that it only takes 30 minutes and I get to see my homies. Seriously, Overlake Oncology has become my Cheers.

Norm

I walk in and the front desk crew says “Christa!” I think that makes me Norm. I don’t see Dr. Captain America every visit, but I did see him last week. He’s not giving me so much crap about my anemia and I even managed to weasel out of a blood test (in exchange for getting a flu shot). This was the first time I’d seen Cap since surgery and it was the day after the Super Friends conference to discuss my case. Cap told me that with pre-menopausal womean (I am considered pre-menopausal because I was still having periods before chemo stopped them) usually get Tomoxifen for five years as their hormone therapy. But…aromatase inhibitors are just a smidge more effective (like 3-4%) in preventing a cancer comeback. But it won’t work if your ovaries are still producing estrogen. (Remember, my cancer was VERY Estrogen-reactive). So, given my age (I’ll be 47 in December) and the stubborn (there was still cancer in my lymph node after all that chemo) and aggressive (the aforementioned HER2+) qualities of my cancer, they think it would be best to go the aromatase inhibitor route. So there are two ways to make that happen. 1. Wait 8 -10 months to see if chemopause ends and Aunt Flo returns or if she’s gone for good. 2. Suppress my ovaries with drugs.

So, that is the plan for Phase 4: Some time after radiation has finished I’ll start getting monthly injections of drugs to suppress my ovaries. And then I’ll take a daily pill that is the aromatase inhibitor. That will go on for five years. FIVE. Side effects can include osteoporosis and joint pain. So before beginning this course of treatment, Cap is ordering a bone density test I guess to make sure my bones are good to start with.

It’s kinda awesome to not be on any drugs at all right now. Well, I mean I guess the Herceptin is inside my body, doing its thing, but I only have to go every three weeks, and I don’t have any side-effects. I don’t have to go to the hospital at all this week, which is refreshing.

Loki helping with the dishes
Loki helping with the dishes

And I feel good! I volunteered to help at my first-grader’s Halloween Party on Friday, and my chemo kitten, Loki, (we found out he was born on the day of my last chemo!) is filling our house with naughty kitten antics and soft kitten snuggles. And MY HAIR IS GROWING!

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I know it doesn’t look like much, but the hair is fine and fuzzy and my head looks just a smidge darker. I’ve still got this creeping dread/anxiety inside, but I’m functioning much better. Still haven’t resumed work on my book, but I made some really good soup the other day.

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