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Archive for the tag “breast cancer”

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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Sometimes I miss cancer.

Are you surprised? I am.

tumblr_static_shrek_3dAprès cancer is a series of milestones. One year since my first chemo! One year since my last chemo! I have come to the conclusion that my cancer-free status dates from my lumpectomy, when Doctor Superman removed those bad lymph nodes and the clip to show where Turdy once lay and that surprise little in situ fucker. That surgery was October 8th.

Boob trouble

As my cancer-free anniversary approached I noticed a red rash on the “bad” boob. It itched and it seemed to emit heat. I didn’t think much of it until a week later when it was worse.

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The redness and heat were bad but I also thought I had peau d’orange.

Then I started to do survivor math: bad boob + persistent rash + one year must of course equal Inflammatory Breast Cancer. Let me tell you something about IBC: it’s a nasty fucker. It’s very rare, but it’s deadly as shit. By the time you notice a weirdness on your boob, you’re probably stage IV. Here’s where it gets really messed up: because it’s very rare, it’s almost always mistaken for something else. It’s sort of like paranoia. If you think you have it, you’re probably just paranoid.

I email my oncologist and fully admit I’m probably nuts but my boob and rash and la la la. He writes back right away (bless that man) and says while it’s unlikely to be IBF, come on in and have the nurse practitioner take a look. So, I go in and she looks and she says it’s probably some sort of dermatitis and she doesn’t think there’s anything suspicious about it. She prescribes some cream, and almost as an afterthought says: “Well, because it’s the right breast let’s give you a round of antibiotics too.” And I was supposed to be relieved. But I wasn’t. Because that’s how every single IBF story goes.

1. Weirdness on boob.
2. Doctor prescribes cream.
3. When that doesn’t work, Doctor prescribes antibiotics.
4. When that doesn’t work, Doctor orders a skin biopsy
5. Patient is diagnosed with IBF and the cancer has had six or eight extra weeks to metastasize.

I went home convinced I had IBF and just had to go through the motions of eliminating non-cancer to appease my doctor. I creamed and antibiotic’d and the rash got worse. It spread across my boob and then it got little pustules.

And then it got better.

I’ve formed a little group of Facebook friends that are breast cancer survivors. They range from a woman who had stage 0 and avoided chemo to one who has been stage IV since her triple-negative breast cancer came back after she’d almost hit 3 years in remission. I messaged them about my rash and they all told me it was super unlikely to be anything; but to have it checked out for my peace of mind.

I reported back to the group that I’d been sent home with a couple prescriptions but that I didn’t feel confident.

“Is my body telling me that something is really wrong, or am I just damaged?” I asked.

“Damaged,” they replied to a woman.

“Damaged,” they wrote.

“Even after four years every headache is a brain tumor, every ache is metastasis.”

So, I guess I’m a hypochondriac now?

Body trouble

Then the election happened and I was so stunned, heartbroken and demoralized that I stopped taking my fat pills, which is what I call my aromatase inhibitors. The first drug I was on, Letrozole, made my joints hurt so much it was difficult to stand up from a sitting position, and climbing the stairs to tuck my daughter into bed was a painful and laborious undertaking.

After six months of that I switched to Exemestane and my knees felt better and my hot flashes weren’t as severe or frequent. But I blew UP. Without changing my diet or activity level at all I gained 20 pounds in three months. My oncologist tells me that this hormone therapy is even more important than chemo (especially when you consider my lymph nodes were involved and I was HER2 positive and my Ki-67 was high….yikes!) and that while a year ago the protocol was to stay on it for five years, now it’s TEN.

So I cut sugar out of my diet–which was tragic because ever since chemo I’ve craved sugar like a child. Still, nothing. I’d lost 20 pounds from chemo, then gained 10 back when my appetite returned. And then 20 more pounds with the hormone therapy. So now I’m 10 pounds fatter than I was before I got cancer. I weigh more than I did nine months pregnant. This weight gain and inability to lose weight is a known side effect and there doesn’t appear to be any treatment. Even the patients who only eat organic shit and exercise every day get and can’t lose the belly. Besides feeling like a fucking monster, guess what’s a risk factor for a cancer recurrence? Yep, obesity.

And I look back at the videos of that woman with long dark hair and little skirts with a gleam in her eye having fun and I don’t even see a shadow of myself in her anymore.

And lordy, back then the whole world and their uncle Bubba just had to tell me how fat and ugly I was. Some of them said I looked like a bulldog. More than a few compared me to Shrek. Not even Fiona—Shrek. And now I see there was nothing wrong with her. She looked pretty okay for a person in her late thirties who had borne two babies.

Now I actually do look like Shrek. It’s not just the weight, it’s what chemo did to my body and my skin and my eyesight. It’s like in a matter of months I went from rather dumpy middle-aged mom to an ancient ogre with wrinkled age-spotted skin and that sick crepe-neck. My physical ailments are more similar to those of my mother’s generation than my peers. I look like an old lady and feel like one too.

Ergo, I stopped taking the damn pills. For all the vain and inglorious reasons noted above and also because I’m not all that invested in longevity if it’s gonna be in a world where Donald fucking Trump is in charge of shit.

Heart trouble

So, going cold turkey on my fat pills may or may not have exacerbated the stress and despair I’d been experienced for two post-election weeks when, after 4 or 5 days of dizziness, shortness of breath and a tight feeling around my chest I went to the ER. Partially because I was too embarrassed by my IBF freakout to talk to my doctor. I just wanted them to whip out a stethoscope and listen to my heart and tell me I was fine. But ER’s don’t play that.

Here’s a tip. If you ever want to go to the front of the line at the ER, tell them you have chest pains. The next thing I know, I’m in a gown, in a bed, getting an EKG, blood test, urine test, a chest x-ray and two doses of a delightful treat called Dilaudid.

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It’s Dilaudid Girl! She fools everyone with the strategically placed sheet. What double chin?

Everything was perfectly fine with my heart. There are white blood cells in my pee, but I don’t have a fever so who the fuck knows.But of course you must know by know I started Googling bladder cancer.

Contributing to my stress is that I’ve been searching diligently for 10 months and haven’t found a full time job. I haven’t even gotten a response for jobs I could do in my sleep. I even threw my hat in the ring for a job I basically created at a former employer…and didn’t make it past the phone screen. That felt almost exactly how I imagine a knife in the heart feels.

Hire me. Please.

I haven’t gotten to a face-to-face interview for any permanent job anywhere. For ten months. So I’ve been doing freelance stuff. But between hustling for work and begging clients to pay their invoices it’s pretty much a big fat ball of stress.

At one point I got superstitious. Like, I’ve been a pretty good person for the past several years, but before that I hurt some people. Not much in the way of real malice, but thoughtless comments, loose lips, taking a joke too far, general bitchiness. So, I went on what I called my “apology tour.” I apologized to former coworkers, online acquaintances, old boyfriends, you name it. For big stuff and for stuff so petty the victim had forgotten about it. It felt good. I felt unburdened. I was like “OKAY! NOW we’re getting somewhere!” And then suddenly a friend I hadn’t talked to in a long time hooked me up with a nice contract gig writing for a large company. I actually had an interview! All systems go! But then these things happened in this order:

  • The budget for my services wasn’t approved – sad face
  • They came up with a test-case to prove my worth – happy face!
  • They want me for three months a 40/hrs week! – happy face!
  • Four weeks pass and the contract isn’t signed. – sad face
  • Company re-org! They want me to contract 3 months then change to full time permanent! – ecstatic face!
  • Two weeks of silence – sad face
  • There’s no budget AGAIN and they can offer me 30 hours a MONTH – what face do I have now? Disappointed face? Jerked around face? Glad to have fucking scraps of work face?

Now, don’t get me wrong, it’s not 100% misery and self-pity up in here. The chickens are laying fresh eggs. We spent a fun weekend with friends in the mountains. My father finally got his ailments properly diagnosed, and I met Bruce Springsteen!

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I told him his music got me through 6 rounds of chemo. He said, “Thank you, sweetheart!”

 

But all in all, I sort of miss cancer right now. It was really liberating to have ONE job: survive.

Cancer Slayer: Post Script

Yesterday I had surgery to remove the medi-port that was installed a year ago ahead of chemo. Since then I’ve had six rounds of chemo, multiple echocardiograms, 11 infusions of Herceptin, a lumpectomy and lymphnode takey-outy, 30 sessions of radiation, a bone density test, I don’t remember how many MRIs and blood tests and zillions of pills. But with the removal of the medi-port, I’m officially done. My surgeon Dr Superman says it’s his favorite surgery because it’s symbolic. I won’t need any more chemo because I’m going to be okay.

So, I wanted to give an update from the winner’s circle. I feel like the “finish line” was my last dose of Herceptin and this is just the clean-up, the victory lap.

My hair is growing back thick and curly (just like it was before it all came out). Unfortunately with curly hair, it tends to get WIDE before it gets long. So I’m sporting a look that’s a little bit Will Ferrell, a bit Bozo, and a helping of Madam Hooch. Ma'am_Hooch

My eyebrows are filling in a little bit, but they still need an assist from an eyebrow pencil, which I had never in my life needed to use being from the Brooke Shields brow club.

My eyelashes are another story. So pathetic. I religiously applied RevitaLash every night and little stubs began to grow…but SO slowly. The few lashes that hadn’t fallen out in the last round of chemo were thin and twisted little bastards. Attempts at mascara just emphasized the sorry situation and made it look as though spiders had crawled onto my eyelids to perish. SO, I got eyelash extensions. I really did. I lay down for two hours (and 200 dollars) while a lady used surgical glue to attach fake individual lashes to my spider legs and lash stubs. And guess what? I LOVE THEM. Worth every damn penny because I feel like a girl again. A healthy, non-cancery female woman. So there. Is it petty and vain? You bet your ass, and I’m going back to do it again in two weeks.

My medication is down to a once-daily aromatase inhibitor. Remember how I said there were no side-effects? Well, once enough built up in my system, I did start to experience some of the common ones, specifically joint pain and this numbness and stiffness in my hands. It’s annoying. It’s as if all of a sudden my body is eighty years old. I move like your grandma when she gets up from the couch to get you another cookie. A lot of pausing and strained smiles. It sucks but it’s better than the cancer coming back, am I right, folks?

Speaking of the potential return of He Who Shall Not Be Named…angy turdy tumor

…I have calmed down so much and am starting to acclimate myself to being cancer-free. It took a lot longer than I’d have thought, but I’m pleased to report I have come down from the ledge of constant fear and worry. It just took time. (and probably the Paxil helped).

So what else is new? We moved into a big house with a ginormous yard. My youngest is going to a new school and already has a new best friend and play dates and birthday party invitations. Her birthday is next month and for the first time in her life we’re hosting the party at our home in our back yard with a rented bouncy house.

Gunny is going to college full time working on a business degree and he also got his realtor license and is working hard to get things going on that front.

My older daughter is thrilled to have her own room again (she was sharing with her sister in the old apartment) and she’s raising some baby chicks named Bellatrix, Luna, Minerva and Tonks.13086632_10153616004177616_2292435789660856514_o

 

Me? I’m looking for a job. My hesitant stabs at healthcare type deals didn’t really amount to much. I have zero experience so I can’t blame them. I find myself applying for the kind of jobs I did before and sort of falling into some old habits that I’d hoped to leave behind. Petty concerns like a long commute or money stuff. My former field of work is small and incestuous and very competitive. I’m disheartened at how easy it was to forget about my priorities and my new-found peace of mind. So my answer is this: I’m going to focus on the future that I’ve now accepted that I’ll have. I’ll get a job, certainly, and do it to the best of my ability, but I am also going to get my degree in something that will fulfill me in the long run. I want to be a counselor–probably an end-of-life/hospice counselor. I will need a lot of school, but the years are going to go by regardless and at the end I can either have something to show for it or not. I choose school. Not finishing my BA is my only regret in life and it’s something I can actually fix! So I’m doing it!

As far as my personal life and psyche? I feel so freaking lucky. Walking my kid to school on a sunny day is just idyllic. Weeding the yard makes me inexplicably happy. We run through the sprinkler and roast marshmallows in the fire pit and make daisy chain crowns.I sleep so well in this house it feels like we were drawn to this place for a reason. I’m…HAPPY. As Allison summed it up this morning on the way to school:

“Ahhhh. I love life!”

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And so, I don’t think I’m going to write about cancer any more unless there is some sort of update. I’m going to take these blog posts and flesh them out and fill in the blanks and publish them as a book. Maybe people will want to read it and maybe they won’t. But it’s something I feel strongly that I need to do.

If you were here for the cancer, I appreciate your interest, love and support. We now return to our regularly scheduled blog posts about books and writing and kids and work and maybe some chickens and gardening. 🙂

 

 

 

 

Breast Cancer, one year later

A year ago today I got a life-changing phone call. I had infiltrating ductal carcinoma: breast cancer. It’s sort of a sad anniversary. I feel in a way as if I lost a year of my life (along with my hair, a chunk of boob, my fertility, and a few lymph nodes). But at the same time I gained so much knowledge. I know now how much I am loved. I know I can handle anything. I know I’m a survivor. I know now precisely what is important to me: My family. My health. My peace of mind. And what’s not: Stuff. Appearance. Impressing strangers. Being “cool.”

The parameters of “success” have changed drastically for me. If I’ve got my family, my health, and peace of mind, I’m good. No matter what I’m wearing, what I’m driving, what’s in my bank account or on my business card.

So thank you, cancer, for the clarity.

To update on medical matters:

  • I have three Herceptin infusions left, and then I’m done! I’m assuming I can get my port taken out, and that will be a huge deal for me.  Already planning a new tattoo to cover the scar.
  • I have had two injections of the estrogen-blocker thus far without any side effects. They were one-month doses. Today, I think Dr. Cap will bump me up to a three-month dose.
  • The daily pill I take to keep estrogen-hungry cancer from coming back is tiny and without side effects. So that’s awesome!
  • I’m supposed to have my annual mammogram this month, but I’m hoping since I just had a breast MRI in January (completely clear, btw!) I can get away with skipping it. Probably won’t fly, but worth a shot.
  • My  hair has come back as thick as before and is starting to curl. My husband loves my short hair and thinks I should keep it this way. I’m more curious to see what happens as it grows, but I’m not ruling out cutting it later.
  • My eyebrows and eyelashes are starting to fill in. I never lost them completely, but they were thin and scraggly AF.
  • I’m feeling normal and healthy. Not sick or weak at all. This seems like a miracle to me. Science is fucking awesome.12772035_10153449574902616_7427532228197249375_o

This still counts as “medical,” but I think it’s pretty important. I have a history of depression, starting in college and off and on throughout my twenties. I sort of figured (or at least convinced myself) I had “grown out of it.” But cancer kinda threw me for a loop. A month ago, I admitted to Dr. Cap that I thought I might be depressed again. That I expected when treatment was over that I would spring up ready to kick ass and take names. “But I still feel broken,” I said, as a tear rolled down my cheek. (Poor Dr. Cap, he’s the only one I ever cry in front of!) He asked me if I felt like hurting myself. “Not today,” I admitted. He told me that depression with cancer is not unusual at all and prescribed Paxil and put in an urgent referral for their shrink. The shrink’s office called two days later to tell me that they don’t take my insurance. [Just want to say here that that’s basically the worst thing you can do to a person who’s depressed: tell them they aren’t “right” and give them work to do (finding a new shrink)]. I still haven’t found a shrink, but…

I’ve been on antidepressants for a month and I feel like I’ve been living in a cave and finally found my way out into the sunlight. I’ve begun actively looking for a new job, I socialized with old friends, I’ve been going to the gym five days a week, and my husband and I just signed the lease for a house on a half-acre after living in an apartment for over a decade. Did I mention science is awesome?

Anyway, I’m feeling like a billion bucks. Like so great I think I’m grateful to Turdy the Tumor, because I can’t help thinking that that little cancery fucker led me here, to this good place with my family, my health, and peace of mind.

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.

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.

 

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.

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