Trixieland

words about words

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.

 

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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.

The Magic Words

Complete Remission.

Hooray, right? When did this happen?! Oh wow!

The Boss

Here’s the thing: I posted those two magical words on Facebook over a week ago. And one of my friends commented “I can’t wait for the triumphant blog post.” So, I’ve been waiting to feel triumphant and have come to the conclusion that…it ain’t gonna happen.

See, I was apparently in complete remission as soon as my surgeon took out those little cancer chunks back in October. But no one told me. See, I’m not a doctor obviously, and this is my first–and hopefully only–cancer rodeo. But I’ve read a lot and I’m a very active patient. I pay attention and I follow up and I ask questions. So the key phrases the search engine in my brain was looking for when Dr. Superman called me with pathology results were: “No evidence of disease” or “remission.” I knew enough to understand that “cured” was off the table. That’s not a word you use with cancer.

So, I didn’t hear those words and I freaked out. I had a meeting with Buffy the Cancer Slayer and still, those words were missing. And in all subseqent meetings with every person on this superfun cancer “team.”

Did I ask “Am I in remission?” No, I guess I didn’t. I’m fairly certain I’ve asked “Is there any more cancer in me?” and have been told that we have no reason to think so. No evidence. No evidence of disease, right? Only no one strung those three words together.

So, the last time I was in for my Herceptin infusion I saw Dr. Captain America and I asked him this question:

“So…do I HAVE cancer or did I used to have cancer? Am I an ex-cancer person?”

He replies. “Ex. You’re in complete remission.”

Well, halle-fuckin-lujah! But could no one have SAID that like maybe two months ago?!

Words are important. And I’m thrilled to hear those magical words and to repeat them to all the friends and supporters who care about what happens to me. And I’ve tried really hard over the last week and half or so to shed the frustration and focus on the outcome. I don’t have cancer anymore! Hooray!!!!!

But, gosh, the last couple months of my life would have been different if Dr Supe had just said “remission” when he called me that day. I was ready to hear it. I was ready to celebrate. And I kinda feel like I got ripped off.

 

Schooled is free this week

Have you been waiting for the perfect opportunity to try the Lexy Cooper mystery series? There’s no time like the…present.

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From December 7 through 11 the digital version of Schooled (Lexy Cooper 1) is absolutely FREE!

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What’s Schooled about?

Lexy Cooper is a Community Manager at Xenon Corporation, maker of the Xenon24/7 videogame console and Xenonline gaming service. When a young woman’s nude body is discovered on the Xenon corporate campus, Lexy’s uncle, homicide detective Mike Malick, catches the case. As Malick investigates the crime, Lexy works the case from inside Xenon and discovers more about the seedy underbelly of the games industry than she ever wanted to know.

What do readers say?

“Filled with great characters, and a twisty-turney perfect murder mystery plot.”
“Witty, empowering, and deeper than you think.”
“Lexy is a character I find myself thinking about even weeks after finishing the novel.”
“A captivating thriller that introduces you to the inside of a big company that sells widely-loved entertainment products.”
“An awesome mix of humor, action, sex and more.”

Download your copy and tell your mystery-lover friends!

 

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.

Chemo Tips for Cancer Buddies

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

CHEMO TIPS FOR CANCER BUDDIES!

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

    Rocking the chrome dome during Round 3

    Rocking the chrome dome during Round 3

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

    Me and Amy. Best friends since 1973!

    Me and Amy. Best friends since 1973!

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

Next time: Chemo Tips for Family and Friends.

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.

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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.

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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.

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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

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