Trixieland

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Archive for the tag “radiation”

You’re a cancer survivor – a bullet list

  • One day you feel a lump in your boob. Machines create images, doctors test a chunk. It’s cancer.
  • People say you’re a survivor the moment you announce your diagnosis. You think, “huh? What’d I do?”
  • Treatment begins in early May and concludes in late December. Start the new year clean, you think.
  • Through it all no one allows you to talk about the possibility of your death. It’s taboo.
  • 6 rounds of chemo didn’t kill all the cancer, but surgeon got the last bit. Radiation to seal the deal.
  • You think about what else the chemo might have missed. In places the docs aren’t looking.
  • You move from the apartment you’ve inhabited for 10 years to a big house with a huge yard.
  • Your brain feels foggy and you’re sure the cancer’s in your brain. It’s not.
  • You finish Herceptin in April, and begin hormone treatment that will last for five years.
  • Hot flashes ensue, along with joint pain that wakes you at night. Your knees sound like Velcro ripping.
  • You gain 15 pounds from the sudden menopause. Dropping to 500 calories a day doesn’t help.
  • You accept being plus-sized, and buy new clothes. Your age has made you invisible anyway.
  • You visit the oncologist every three months for an injection that shuts your ovaries down.
  • The joint pain is so bad your oncologist switches you to a different hormone medication.
  • Your oncologist tells you the new recommendation is 10 years of hormone meds. Not five.
  • Your joints feel better but you gain another 10 pounds in the space of two weeks. Right in the belly.

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  • You go back to college online and take on freelance work for the first time in a couple years.
  • You get a rash on your “bad” boob and panic that it’s Inflammatory Breast Cancer.
  • You consult your posse of  survivor friends. They reassure you, but tell you to go in.
  • It’s not inflammatory breast cancer. Either the antibiotics or steroid cream fixed it. You feel dumb.
  • You pass your first post-cancer mammogram with flying colors. You were expecting bad news.
  • Of your survivor posse, one has stage IV, after “beating it” nearly three years prior.
  • On next oncology visit you complain about weight gain. Obesity increases your chance of recurrence.
  • Doctor switches you back to original meds. You don’t lose any weight and the joint pain returns.
  • You pin all your hopes for the future and redemption for millennia of oppression on Hillary Clinton.
  • On election night you go to bed with a mouthful of marijuana oil before all the votes are in.
  • When you wake up and remember, you briefly consider suicide and settle for stopping your meds.
  • You gain another 20 pounds in anger, disbelief, and heartbreak. You get a safety pin tattoo.
  • In school you study psychology and plan to work with hospice patients and families.
  • You apply to volunteer in hospice, visiting patients. Your Stage IV friend tells you it’s your calling.
  • Your Stage IV friend asks if your brownie troop can come to her house and plant tulips.
  • Before you can gather the girls for the tulip project, your friend goes into hospice herself.
  • On the way to visit you think about what she’ll say. Maybe you’ll make a deathbed promise.
  • She doesn’t speak or open her eyes. You brought a huge bouquet of tulips that seem cruel now.
  • On your first day of hospice volunteer training, your Stage IV friend dies.
  • At the funeral you connect with a coworker from early in your career. She’s a survivor too.
  • That’s four of you, from just one small department in one company. Stats? Or the water?
  • At home you casually talk about what you’d like at your funeral. Your youngest stares at you.
  • You don’t think she knows that cancer kills people. You’d talked about sickness, but never death.
  • After your friend’s death you go back on your medication. Because not to insults her memory.
  • You take on tons of freelance work and study hard. You make money, contacts, and the Dean’s List.
  • Math and a new full-time job defeat you at school and you drop out of college for the fourth time.
  • You go on vacation and don’t take your medication. You don’t bother to start again at home.
  • You move into your dream house in a Norman Rockwell neighborhood where kids roam free.
  • Every night in the new house you dream about cancer. Here’s what you dream:
  • You dream about sobbing and clinging to your mother as you say “Mommy, I think I’m sick again.”
  • You dream about wasting away in a hospital bed, too weak to lift a book to read it.
  • You don’t think you’re psychic or clairvoyant. But what if the dream is a message from your body?
  • Twice, when you’ve dreamed your teeth fell out, you’ve been ill. Mono and pneumonia.
  • A friend dreamed her dead mother told her she had breast cancer. And she did.
  • You say, “I had a weird dream last night” “Was it about cancer coming back? I don’t want to hear it.”
  • You can’t talk to anyone about your fears. You just wallow in it. Silently. Alone.
  • You think about the new house and where you’ll convalesce. You buy a swing chair for the backyard.
  • You plan how to turn your new library into a bedroom and how you’ll watch the birds as you die.
  • You go camping to watch the total eclipse. You wonder if you’ll be alive for the next one.
  • The chest pain gets worse. One day at work you find yourself holding a cold can to your chest.
  • You have trouble catching your breath. You drive to the Emergency Room. You tell no one.
  • Your EKG, blood tests and chest X-ray are all clear. You’re a fool. You’re a hypochondriac.
  • You miss a big meeting, and confess to your boss you’re at the hospital.
  • You don’t want him to think you’re a sick person. You don’t think he knows about the cancer.
  • You’re already the oldest, fattest, most unsightly member of the team. You can’t afford more.
  • Your job is stressful and your brain isn’t as sharp as it was. Is it ageing or chemo or both?
  • Google tells you former smokers have an increased chance of lung metastasis.
  • At your oncology appointment you tell him about your chest pain. He refutes your Google information.
  • Your oncologist orders a CT scan to rule out pulmonary embolism and cancer. Refills meds.
  • He emails you late that night to tell you it’s clear. There’s something in your lung, but not cancer.
  • A regular doctor diagnoses an inflammation in the cartilage between sternum and ribs.
  • Prednisone clears up the lungs, and your eczema, plus your joint pain. But only for a week.
  • You feel relieved that the cancer’s not back so you go ahead with your plans to lead a new Brownie troop.
  • You want to just LIVE, but it’s always there in the back –and often front—of your mind. Cancer.
  • You wanted your life to be more meaningful, but you’ve quit school and haven’t done hospice work.
  • This is how you survive. Living between the recurrence nightmares. Pretending you’re “better.”
  • But deep down you’re convinced that cancer isn’t done with you yet.
  • And the only way to prove otherwise is to die of something else.
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The Existential Job Search

I’ve been meaning for months now to write a post about how similar cancer and pregnancy are. Basically, your body isn’t your own, people are amazingly supportive, there is a ton of literature and personal stories of friends and acquaintances to take place of statistics and the unknowable. I was going to be much more in-depth and humorous, but that’s the gist of it. (Maybe I’ll get it right in the book. Should I do a book?)

My final point in the cancer-is-a-baby-you-never-asked-for theory–and the one that’s especially relevant for me now–is overestimating the “after.” When I was vastly pregnant with my youngest spawn I remember looking at thin people in magazines and on TV and thinking “as soon as I drop this load of baby I’m gonna squeeze my ass into that there miniskirt and drink five margaritas and DANCE!” etc. During chemo and surgery and radiation I had a lot of similar thoughts about how I was going to bound up out of this “sickness” and just be ON FIRE FOR LIFE! So full of energy and appetite and enthusiasm! Unstoppable!

Well, those notions were just as unrealistic as the post-baby ones. Six years later I have yet to squeeze into that there miniskirt (and at this point I think my miniskirt days are done even if I were svelte).

hit by a busI have been stuck in an existential quagmire. Thinking about what’s next and if anything is next. What I’m trying to say is that it’s hard to plan for an uncertain future. Yes, yes, I know “any of us could get hit by a bus tomorrow!” but honestly, when you say that to me it’s as if you’re dismissing my actual legitimate concerns. Here’s a cold, hard, fact: There’s a 30% chance that I’ll be dead in five years. That’s not me being a pessimist; that’s reality.

Now, I’m doing everything I need to do to be in the 70% on this. I’m still getting Herceptin infusions every three weeks through April, and I’ll be on hormone therapy (aromatase inhibitors) until 2021, and of course I’ll have annual mammograms.

But cancer is a sneaky, persistent little fucker, and if it feels like coming back, it’s going to.

So, I can live with that. But it’s hard to LIVE with that. It’s difficult to make long-term plans under that kind of cloud. For instance, I would like to go back to school. I’m 15 credits short of completing my bachelor’s degree and it’s something that I regret not finishing. BUT, what I’d really like to do is get a degree in something healthcare-related and that would require many many more credits than 15. But here’s the thing: How much money and effort and time I’d be studying and ignoring my family am I willing to spend if I only get five years? Or four? Or three?

But if I’m in the 70%, what if five years goes by and I’m cancer-free but I’m still at square one on that degree because I was too scared and worried to start something I might not be able to finish?

I’m having trouble bouncing back from this cancer business. Physically, my complaints are few: My armpit is still numb from surgery. My right boob is noticeably smaller than my left (both surgery and radiation contributed to this). I have scars and a medi-port. My eyebrows and eyelashes are sparse. Chemo brain hasn’t abated much. Luckily, I’m a writer, so when I can’t for the life of me come up with “calves” I improvise “shin butts.” My hair is coming in pretty well and I think it says “unfortunate haircut” more than “cancer” now.

Emotionally/psychologically? I’m having a rough time. Crippled with indecision, angst, and weltschmerz based on an unknowable future I turn to Samuel Beckett.

Samuel Beckett

“I can’t go on. I’ll go on.”

So, I’m taking baby steps back into the World, and I hope the World will welcome me.

 

 

Breast Cancer: The End.

It is done.

What began with a lump almost one year ago is finally over.

From the diagnosis

Turdy the tumor ultrasound

Darth Turdy

Through six rounds of chemotherapy

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Rocking the chrome dome during Round 3

Surgery on my breast and lymphnodes

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Damn you, cancer!

and 30 doses of radiation,

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this blog has been a place for me to collect my thoughts, sort out how I felt about what was happening to me, document the experience for the future, and sort of inadvertently–though in the end most importantly–help fellow cancer patients feel they weren’t alone.

I went from this:

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1st dose chemo. May 5, 1015

To this:

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Today. December 30, 2015

Thank you for going along for the ride. Thank you for not turning away from the ugly realities of scars and chemo shits, peeling nipples and weakness, doubt, and flat-out terror. You kept me going, readers.

What’s next?

First, the end is not the end. The day after my final dose of radiation, I was back at the hospital for an echocardiogram. I’ve got Herceptin infusions every three weeks until May. I’ll start a five-year hormone therapy treatment mid-January, and in the interim I’ll have a bone-density test and another MRI on the “good” boob. I’ll have diagnostic-level mammograms for the next three years. I told my daughter all this isn’t fighting cancer because the cancer is gone. It’s more like treatment that says “…And STAY OUT!”

IMG_4398Because of all this ongoing…stuff, it’s been sort of hard for me to call this “the end.” Then I received a fancy bottle of champagne from my dear friend Sara. I mean, how could you NOT celebrate with this? So I decided to stick a pin in this moment and create a milestone. This is the end of one journey. I made it. And now it’s behind me.

There WILL be a celebration. I’m still figuring out the details. Is it selfish to throw yourself a I Kicked Cancer’s Ass party? Would anyone show up? I want to celebrate it being over of course, but I also want to celebrate the friends and family and even strangers who made it easier.

 

Radiation – End of Days

I haven’t been very good about updating during radiation. The fact is, for the first three weeks, everything was gravy. I got up in the morning, got the kid off to school, read the paper, did the crossword, played games on my phone for a while, then drove the hospital, got zapped, drove home. NBD.

Then, suddenly, after the 16th session, I noticed that I had a wound under my boob. Turns out that poor area–that hadn’t seen sunlight in decades–was the first to get burned. And I, unknowingly, was scratching it in my sleep. I’d actually scratched myself raw before I noticed it. That’s when daily wound care with Nurse Rad started.

After the underboob, the armpit went, and finally the nipple. I tell ya, you haven’t lived until you’ve had your nipple skin peel off. It’s gross to look at, and it’s REALLY painful. It’s Vicodin painful. Here’s some grody photos I took along the way. I tried not to make them too “booby.”

rads underboob

Underboob.

Rads -side and under

Side and underboob. Burnt and starting to peel. The purple marker is where they drew lines for the “boost” portion of treatment.

rads neck and side

Burnt and peeling sideboob, shoulder, and neck. The neck/shoulder business is from radiating the lymph nodes. Those guys got five more zaps than my boob did, because that’s the area the cancer is most likely to recur.

Anyway, I was pretty proud of myself for being so tough about radiation, but it turns out I just hadn’t really been tested yet. I was tired as fuck. I’d go to radiation, get my wounds soaked and salved and wrapped, then I’d go Christmas shopping for a while and finally come home and collapse. I often fell asleep before dinner.

My conclusion about radiation: It’s true what they say. Your skin will burn and then peel and you will be massively tired.

I have one session left. I’m smiling, and healing.

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.

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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.

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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.

Pathology, surprises, and what’s next

Since my last post I have calmed down a bit and also found out more information. The first thing I did was go to Dr. Supe’s office and pick up my pathology report. After much Googling, consultation with my billions of breast cancer books, and knowledge I’ve sucked up over the past six months, I had some answers. Then I had a post-op appointment with Buffy the Cancer Slayer and learned more.

Pathology Report post-surgery

Okay, so the good news is Turdy is dead. I will place no flowers on that fucker’s grave. But, I am grateful to him for being big and lumpy and close to the surface. If I hadn’t felt his gnarly ass in my boob, this cancer would probably still be undetected, spreading its shitty, sneaky doom throughout my body.

RIP Turdy

Let’s go through my list of Stuff I Don’t Know and update:

What I don't know

  1. Well, I guess that was rhetorical.
  2. Um…probably not. Here’s why: The nodes that drain from my breast to my armpit were discovered using the radioactive tracer. Dr. Supe examined three of them (the ones that made the Geiger counter click) and took out two. one showed signs that cancer had been there and been killed off by chemo. The other had some stubborn cancer still in it. (probably because the malignant node was so frickin large. Twice the size of Turdy.) So I guess the rest of the lymph nodes looked okay?
  3. A total of 7 grams. 4 for the former Turdy site and 3 for the little scoop where the DCIS was. Here’s what 7 grams looks like: 7 grams of weed
  4. Nope. Nothing left!
  5. We have to assume not, as nothing showed up in mammogram, ultrasound, MRI, or PET scan. My guess is that Turdy’s fat ass obscured the tiny 1mm DCIS. Could there be more? Sure. But we don’t have any evidence that there is.
  6. Buffy says that additional surgery wouldn’t be more lumpectomy or a mastectomy. The concerning area is my armpit, so if there’s more cutting, it would be to remove more lymph nodes. Or maybe all of them in my armpit. There isn’t consensus on that yet…
  7. Well. Because there aren’t many straight answers. Will the cancer come back? No one knows. You can look at stats and probability all day and night but you just can’t predict recurrence. It’ll come back or it won’t. And then you’ll know.

Here are some more things I’ve learned and realized in the last week:

  • When Dr. Moviestar called in March to tell me my biopsy was bad news and that yes, it was cancer, he told me it was Stage 2. Of course that was before a zillion more tests and scans. What no one told me (and I guess I didn’t ask, though I did speculate) was that once Turdy Jr. was discovered in my lymph node, my breast cancer was Stage 3. Which is scarier than Stage 2 and maybe it’s better I didn’t know until I flat-out asked Buffy. Still. Yikes! The survival rate takes a pretty large dip between Stage 2 and Stage 3. From 93% to 72%.
  • I think my terrible reaction to Dr. Supe’s phone call about the path report is due to unrealistic expectations. I expected to hear something along the lines of “you are cancer-free” or “there’s no evidence of disease.” Which equals remission. (Cancer is never “cured.” Sort of like addiction; substitute “remission” for “recovery.”) Why did I think that? Partially I think because my doctors never discussed possible outcomes with me. Never gave me a range of what could be the result. Did I ask? Maybe not. What I did do, a few months ago, was watch Season 4 of Parenthood in which Kristina Braverman gets breast cancer, goes through treatment and SPOILER comes out the other side healthy. parenthood-monica-potter-peter-krauseShe and her husband Adam sit in her doctor’s office after surgery and chemo and he tells her “You are cancer-free.” (Or that’s what I remember happening). So, to me, that’s how the narrative goes. Prince Charming rides up, kisses your dead lips and BAZINGA! Princess Life! Naive? Yes indeed.
  • I asked Buffy if one more round of chemo would have knocked out the remnants of Turdy Jr in my lymph node. She told me that I’d had the most chemo I could have. So I felt relieved that I hadn’t taken Dr. Cap up on his reluctant offer to lower my dose. And also felt a little bit badass. Like I took all there was to take. My chemo was dialed up ALL THE WAY and I got through it. Go me.
  • What I kept focusing on was the presence of cancer. A tiny DCIS in my boob and some extra-stubborn cancer in my lymph node. Forgetting the fact that those two bad boys were cut out of my body. Not inside it any more. Gone.

So here’s what’s next. Tomorrow, all my doctors (Supe, Cap, Buffy, the radiation oncologist, and whoever else) will review the pathology in a “multi-disciplinary breast conference” and discuss what they should do with me. Yes, it’s every woman’s nightmare: people who have seen me naked will be talking about me behind my back. They’ll discuss the armpit surgery and if they think it would make me healthier/safer/less likely to have a recurrence than just going ahead with radiation (which starts soon), continuing Herceptin until May, and hormone therapy (which starts after radiation ends and lasts five years). One of those Super Friends is supposed to call me after the meeting and let me know what went down.

3947706-super+friends+hall+of+justice.jpg

To be honest, I am more leery of the armpit thing than a mastectomy. The more lymph nodes you take out, the greater the risk of lymphedema, which apparently sucks big donkey balls, and they can’t do much about it. But, it’s not like I get to choose. My armpit is being a dick, not my boob.

As for the surgery recovery, Buffy snipped my little stitches and even I have to admit I am healing like Wolverine.

FullSizeRender (9)I still can’t immerse my boob in water for two more weeks and she warned me not to lift weights (ROFL). The grody part of my fingernails is growing out and should be gone in another month or two.

IMG_3287

My hair…well, let’s just say it’s slow going. I still haven’t had to shave my legs.

The chemopause is worse than ever. The hot flashes are pretty fucking terrible. Buffy says that given my current age and the age my mom was when she started menopausing, I probably won’t come out of chemopause, but will just slide right into legit-old-lady-menopause. So, yeah. It’s not like I was going to have more kids, but this is kind of a tough one. However! She told me that exercise and acupuncture can help with hot flashes, and if those don’t work she or Dr Cap can prescribe something for me.

I still have a terrible battery-acid pine cone in my belly. Well, that’s what it feels like. I chalked this up to chemo nausea long ago, but the chemo’s been over for two months today (!) and the pine cone is still there feeling prickly and gross. I think it’s a ball of anxiety and my next step (well, one of my steps in there amongst radiation and Herceptin infusions) will be to maybe talk to a shrink about that shit.

FullSizeRender (10)

Meanwhile! I have lots more energy than I used to. I changed the sheets on the bed without getting winded and I’m doing almost all the stuff I did before. I can eat food and smells don’t bother me and I’m excited about stuff. Like the Star Wars trailer, and my new kitten Loki, and the Halloween party I’m going to this weekend.

Loki Day One

Bad news, confusion, and a giant WTF


I had nearly given up on getting my pathology report yesterday. I’d started second-guessing my memory about what Dr. Superman had told me. (“He said Monday or Tuesday…maybe he meant NEXT week…”) I’d called my surgeon’s office in the morning to make my post-op follow-up appointment that morning and asked the receptionist about my report. She said it wasn’t in yet and she’d call them and find out what was going on. Then I heard nothing all day. So, I was pleasantly surprised when Supe called me around 5:30. He took a minute to apologize for the delay. He said something about how it was taking longer to process or whatever blah blah blah. Get to the good part, I thought. Go ahead and tell me “Congratulations, you are cancer-free.” bad-news-bears1

Only that’s not what he said. One of the lymph nodes he removed had cancer in it. Still. After SIX ROUNDS of shitty, miserable, fucktatious fuckwad chemo. The other node had fibrous shit in it which he says indicates it probably did have cancer, but the chemo got it.

Then the other thing he said was that in the junk he took out of my boob there was DCIS which is Ductal Carcinoma In Situ, also known as Stage 0 cancer. This stuff I guess can’t kill you unless it escapes your duct and becomes invasive (Turdy was Invasive Ductal Carcinoma). From what I understand it’s a sleeper cell. There is debate in the medical world over whether it is being overtreated currently. Right now protocol usually is to cut it out and maybe radiate it. Chemo doesn’t really work because it targets fast-growing cells. Sooooo this is another cancer that had never shown up before. Not on mammogram, not on ultrasound, nor MRI nor PET scan. It’s an October surprise.

So what now? What do I do now. Here’s were Dr. Superman gets infuriating. (Insert a bunch of words about how he’s nice and a skilled surgeon and I respect him, etc etc). Supe thinks in terms of stats. Overall stats. So when I was wondering whether to have a mastectomy or a lumpectomy, he didn’t offer an opinion, just told me that after ten years there was no difference in survival rates. So it didn’t matter which I chose. And he told me the same thing yesterday. That the chance of recurrence of the cancer statistically, over the long term will be the same whether I just go ahead with the radiation I was going to have anyway or if I have more surgery. The difference will be how I feel about it.

“Well, if I just have the radiation as planned, how will we know it worked?”

“You’ll know in ten years when the cancer hasn’t come back.”

Okaaaaayyyyy. That…doesn’t really work for me.

So here’s what I know from this conversation:

  1. The chemo didn’t work completely.
  2. I am not “cancer-free”
  3. I can’t participate in the radiation research study I signed up for.

Here’s what I don’t know:

  1. What the fuck?!
  2. If there’s any more cancery shit in the lymph nodes that are still in my body.
  3. How much boob Supe took out.
  4. If there was anything left of Turdy in my boob.
  5. If the DCIS was in the scoop he took out, is there any more in my boob that they didn’t find before?
  6. What “more surgery” means. Bigger scoop? Mastectomy?
  7. Why no one will give me a fucking straight answer.

Reading back about HER2 + cancer I noticed something that I hadn’t seen the first time.

“According to The New England Journal of Medicine (NEJM), up to 70 percent of patients with HER2-positive breast cancer respond to treatment. However, total remission for the condition occurs in around 7 to 8 percent of patients.”

Maybe I don’t understand it correctly, but it appears that only 7 or 8 percent of HER2+ breast cancer goes into remission. Well, that can’t be true, can it? I mean, was there only ever a small chance that I would, at some point, be cancer-free? Do I not properly understand the term “remission?”

Why did I think I’d get to hear those “cancer free” words? Why was I so convinced I’d be popping champagne corks instead of shaking my head and wondering what the fuck has gone so wrong?

Dr Supe told me he’s on call this weekend and if I have questions to call his service and tell them it’s an emergency. Which is very kind. But I…don’t know that I can ever get a straight-up honest answer out of him. Unless it’s something that I can’t use. When he says it’s statistically identical for me to have more surgery or just the radiation…what does that mean for me as an individual? That I’m fucked either way? Or I’m okay either way? And just what ARE the statistics? He didn’t mention any numbers…and I could spend all day and all of next week looking for that stat and I won’t be able to find it.

I don’t know where I stand. I have an appointment with Buffy the Cancer Slayer on Monday morning and hopefully she will be straight with me. Also, I need to get my hands on that pathology report and see for myself just what is what.

I’m not a child. I’m not fragile or addle-brained. I don’t need to be protected. I’m not asking for nuclear launch codes; I just want to know the truth about what the fuck is in my body, how dangerous it is, and how to make myself as safe as possible.

Is that asking so much?

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