Two Weeks Post Mastectomy/Hysterectomy

I’m a little over two weeks out from surgery. It’s been…a million things, and all those things are still flying around inside my head and hard to sort. I think I’ll write a future post filled with the details for those who might be interested, BRCA mutants like me. For now, though, here’s how the last two weeks have generally gone for me:

First, it was harder than I thought it would be. At one point, as I walked hunched over from my bathroom to my bed four days after surgery, I said to my sister, “I can’t fucking believe I chose to do this.”

It wasn’t the nicest thing to say to my sister, because she is following me with the same surgery next month.

Seven years ago, I had an emergency c-section—the slicing open of my abdomen after it had been constricting on and off during 13 hours of labor. That was pretty painful. My abdomen was extremely sore and bruised and it was hard to pull myself up to sitting for about three weeks.

In my head, I’d compared this surgery to that and I was oh-so-wrong. A double mastectomy is like having Alex Rodriguez take a swing at your chest with a metal bat. Seven times.

I knew the surgeon would open the breast, scoop out the cancer-susceptible flesh, and insert an expander—a sort of placeholder, since I’d chosen not to do full reconstruction at the time of the surgery.

What for some reason I did not know is that the expander is placed under the muscle. I’m fairly small-boned and small-chested, which meant the surgeon had a difficult time pulling the muscle out enough to insert the expander. My surgery ended up taking about two hours longer than usual. I can only imagine, fortunately, the slicing and pulling that was required. No wonder Alex Rodriguez came to mind afterward. (There has been almost no pain from the hysterectomy.)

After the Surgery

I’m hesitant to rip apart nurses because nurses are in my family and, mostly, nurses rock. However, 75% of the nurses working on the 3rd floor of Unnamed Hospital in Highland Park, Illinois from November 4-7 did not rock.

By, “they did not rock”, I mean:

  • I was allowed to remain in severe pain the entire first night of my stay. They had me on no medication save the morphine button in my hand, which I was allowed to push every ten minutes. But since it was, you know, 2am and the previous day I’d had major surgery, it was hard to stay awake to push the damn button. Whenever I did wake, in severe pain, I was told, “You’ve got to push the button to stay on top of the pain.” When my husband and I got angry enough, the nurse finally called the surgeon to get me more medicine.
  • Unfortunately, the same story continued the next day with a different nurse. The new medicine was prescribed to be given every six hours. But by hour four, I was in a good amount of pain. I was told, “Sorry, you need to wait two more hours.” After two rounds of this, again when we got angry enough, she called the surgeon.
  • One nurse put on gloves, typed on a computer, then came and inspected my incisions with the same gloves.
  • I told that same nurse that despite the catheter, I had the very uncomfortable feeling that I needed to pee extremely bad. She sort of shrugged and said sometimes that happens. So I endured the sharp pain in my bladder for an hour until the nurse came back, this time with another nurse. I told that nurse of the problem, she looked at the catheter, discovered it had a kink in it that was stopping all the fluid being pumped into me through an IV from exiting my body, and fixed the problem.

But possibly the most troublesome thing about the last two weeks is that I awoke from surgery with worse vision in my left eye, accompanied by severe headaches and slight nausea about every other day. We’re not sure if this is caused by the lack of hormones, the medications (I’ve tried a few), or the surgery itself. TBD.

All of this sounds like a lot of bitching. Some days, I am pissed. But most days, I’m happy to have the surgery over with. I’m thankful I had the choice to take a big step to prevent me from getting cancer. I feel grateful for the notes and flowers and pumpkin breads and soups and cookies that have been sent to my house.

And I feel deep love from my family. My whole family has been helpful—mom, dad, stepdad, sister, brother, in-laws, aunts, uncles. But there are always standouts, right? The two standouts in my story are my mother and my husband.

My mom, balancing her work bag, her change of clothes, and my daughter's laundry

My mom balancing her work bag, her change of clothes, and my daughter’s laundry

My mom has been at my house almost every day. I was out of my mind for awhile on all the narcotics, but now that I’m more with it, one of the pleasurable side effects of major surgery is that I can sort of feel like a child again. She doesn’t let me get up from my comfy chair. She takes the kids to school. She makes me breakfast. Of course, I have to chat an awful lot with her, but that’s been nice, too. (Love you, Mom.)

Every day for two weeks, my husband cleaned my drains, administered my several medications, helped me shower, brought me everything I needed, reached for all the things I couldn’t, woke with me in the night when necessary, and took care of all of our children’s needs at night and in the mornings and during some parts of the day, too, as he also worked from the dining room table. He did all of this without complaining to me one time. Not once. He never huffed or snorted or rolled his eyes or breathed deeply. He didn’t pause in rising to help me up, in retrieving Chapstick, or bringing water. It turns out there’s a lot you can’t do after a double mastectomy, and he did all of it for me.

I’m trying to think of a joke to make because that’s what we do–if it gets too serious and emotional, my family jokes. But I can’t think of one. So just a big thank you and I love you to Alex, who turned out to be the best nurse.

Alex coloring with Clara while I recovered

Alex coloring with our daughter while I recovered

Boob Voyage

I’m one week from having a double mastectomy and full hysterectomy to prevent the possibility of cancer, since I have the BRCA mutation.

At this point, I’m excited simply because I’m close to getting it over with. Looking back over the last six months, I’ve gone through a full range of emotions and I just wanna get off this roller coaster and be done with it.

Interestingly, I’m forcing myself to write this because I know writing always makes me feel better. But it’s one of the few things I actually don’t want to share on this blog. Perhaps it’s too personal, even for me. In an earlier post, I promised I’d write about it, since it’s as “true” a story as any on this site, but I haven’t felt like it.

So I’ll be quick about this (no editing!) and make a list, and hopefully, as often happens when I write, I’ll feel better. And maybe someone who is going through the same thing will read this and feel better, too.

Things of note.

  • Last week, I got my period. And I realized, “I’ll never have my period again.” And while that would often be cause for joy, it made me cry. Another thing to say goodbye to. (Other times I’ve cried include the moment it hit me that I will have no more children and the moments I’ve thought about losing parts of my body.)
  • Often-present sense of guilt that I feel this sad and emotional about my surgeries, since I don’t actually have cancer. There are groups devoted to the support of people like me, and while at first I thought that was a bit overboard, now I get it. Plus, there are other cancers I still do have to worry about, that I can’t have surgery to help prevent.
  • No, I am not excited about getting a “boob job,” since that’s not what I’m getting, not really.
  • The number of doctor appointments associated with this process is between extraordinary and extra-extraordinary.
  • For a while, I was scared about the surgery itself, more scared than I’ve ever been about anything. I “knew” I wasn’t going to make it through and that was going to be the end of me. I’ve had surgery before, but was never this scared. Fortunately, I’ve passed that phase. If my mom can have a hysterectomy, I can too. This took some mental work, a good reminder that we can change our thinking. Just picture it differently and the picture will change.
  • I’ve never doubted this is the right decision. I’ve definitely freaked out about surgery, but I would freak out even more if I had to get screened for breast and ovarian cancer every six months. As it is, I’ll have to be regularly screened for pancreatic cancer and melanoma.
  • One of the hardest things to put to words is how much I value and appreciate the love I’ve been shown by family and friends. The words “value” and “appreciate” are so ordinary. I’m almost uncomfortable with the wonderful things that have been said to me and done for me. And they remind me that while this isn’t the situation I’ve hoped for, the reality is this: I can largely do something about the shitty situation I’ve been placed in, and that isn’t the case for so very many people. On top of it, I can do something about it surrounded by people I love, and that’s not the case for some, either.

So, really, at the end of the day I feel lucky. Because out of the range of shittiness that can happen in one’s life, I’ll take this any day of the week.

My sister masterminded a surprise “Boob Voyage” party for me, which was awesome in and of itself, let alone considering she will also be having a double mastectomy, one month after me. That’s the kind of people I roll with.

Enjoy some pictures of the party, and I’ll see you on the flip side (meaning after the surgery, not after life).

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Courtesy of my mom and sister.

My mom, me, my sister, and my aunt all carry the BRCA mutation.

My mom, my sister, my aunt, and I all carry the BRCA mutation.

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A table full of some of my favorite people, in a room full of even more of my favorite people.

My husband and sister.

My husband and sister.

I'm quite touched by the number of men who came out to my Boob Voyage.

I’m quite touched by the number of men who came out to my Boob Voyage.

And finally, one of the best cards I’ve ever received, from my friends John and Michelle:

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Endnote: it took some strength for me to call this Boob Voyage, though appropriate. As some of you might remember, I don’t like certain words such as “blog” because they’re too flubbery sounding. Same goes for boobs. But Breast Voyage sounded too serious.

Helping Grandma through Cancer

Ron Estrada and I went to high school together. I haven’t seen him in years, but due to the magic of social media, I’ve discovered he’s a writer. It doesn’t surprise me; he always had a certain sensitivity about him, as you’ll see in this poignant piece about a particular moment in his grandmother’s battle with cancer ten Januaries ago:

January, 2004, I drove to the ranch townhome where my grandma, in her brown recliner, needlepointed table runners for a Thanksgiving that was eleven months away.  She waited for me, for the white bag that sat in the passenger seat of my Jeep, a white bag that may as well have held plutonium with how I considered the ideal temperature and stability and whether it was lit properly in my car in order for it to keep its proper composition and, more, its proper effectiveness.  These were silly thoughts. Nevertheless, when you think that any action you take can further compromise an already troubling situation, you adopt a role where you believe that everything you do holds the utmost causal importance to the immediate future.  So I left the heat off and cracked the windows and sat on my left hand to keep it warm and then switched to the right hand to get it warm and I listened to the Little River Band.

Just a bit earlier that day my aunt gave me the white bag that held a single white pill that was going to be the magic pill that took away my grandma’s cancer.  That’s what we called it, the magic pill.  Hearing it, hearing magic pulled me in different directions.  There was a magic pill in existence and it was sitting next to me in the car.  I thought of the few boundaries in magic.  Coins pulled out of kids’ ears, rouged women made into a cross section with lumberjack saws, warships disappearing in front of hundreds of unblinking eyes.  Magic makes believers.

But I had doubt while being hopeful, tried to establish belief and convince myself with ho-hum adages, the power of positive thinking, so forth.  They all swirled in my head like lottery balls.  Doubt and hope, partners–maybes holding hands with probably nots.

I pulled into my grandma’s driveway with the radio off.  The asphalt whitened by the winter cold, I thought of the seasons, how pavement seems to change color in a deep freeze–uglier somehow and harder looking. She met me at the door, and hugging her was like hugging a newspaper.  She’d lost form and I just tried to fit my arms around the spots that would give me a complete hold, a better covering.  It’s hard to hug someone when you’re not able to relocate all the emotion inside of you that you intend to give away.

“What are you doing?” I said.

“Oh, just working on these tablecloths.”  She showed them to me.

“I like the grapes.  Do you fill them in or leave ‘em like that?”

“No.  You just follow the lines and leave it like a…”

“Border.”

“Yeah.”

“No.  It looks good.  You don’t want to have too much color on it all.  It looks classier with more white.  Your fingers’ll hurt more too.”  I looked at her hands just as she did, thin and veiny, covered in Mercurochrome, as if she’d been into the markers.

“Looks like you got sloppy with the markers.”

She laughed. “Yeah.  They’re cracking something terrible.”

“The winter.”

“And they hurt.”

“Keep putting that stuff on.”  We sat, she on the brown recliner, me on a chair that felt like I was sitting in the elbow of a tree branch. She exhaled and looked upwards and didn’t say anything.

“Here’s the thing from Aunt Nancy.”  I gave her the bag.  I couldn’t say the name.  We talked about it like the room might be bugged. For a moment it felt like we were using sign language. But we were preserving. Keeping the fragile skin of luck unpierced.

“So this is the magic pill.”

“That’s it.”

She opened the box and pushed the tablet through the foil barrier. “Just with water?”

“Umm…I guess.  Probably wouldn’t hurt to eat something.  Bread or something.”

She looked at it, so small in her hand.  Resembling a Bayer.  What you’d pop after a night of booze.  Just a regular pill. She looked at me and smiled, and I was immediately seven years old getting off the school bus.

“Well, if this doesn’t work, sayonara,” she said. She looked at her hand and left me for a moment.  She was a woman looking down at her hand. She was a woman alone facing the dark doorway of probably not.

And this image: Pinocchio, sitting outside on a stone step, feet turned in, he rests his head in his hands, his eyes open only because he’s awake; he isn’t looking at anything certain, his eyes might as well be his elbow as he’s dropped in heavy, masking thought, reflection, and thinking about all he’s done, how it affects the now and, then, naturally, the future.  Pinocchio sits on his donkey/mule/jackass tail, ear tops curled, sulky, his cricket friend sits nearby, mirroring his manner, both: “What have I done?  What now?  What do I have left?”

There’s a marked hopelessness on the faces in this picture, despair. I had the poster on my wall of this scene and there’d be times at night when I would stare at it ’til the periphery would blur and my focus would be so tight that the image would become a short narrative, though only consisting of Pinocchio deeply inhaling and then the quick out, an audible shrug.  Both seemed so lost that that this type of breathing (the kind where you might actually have to tell yourself to do it) seemed like the only thing that they could do.  They were stuck.

It’s kind of a funny poster for a kid’s room.  I did like the cartoon, the story, and I don’t remember if I asked for it at some point.  If not, I like the idea of my parents choosing it as a cautionary tale of sorts. Nevertheless, it was there and part of my small room and stood for something in my life whether or not it stood for something in my parents’.

I thought of that loneliness and also of friendship, the two sharing in the misery, making the situation an “us,” the pursuit for solution a team charge.  And there sat hope, in the collective, in the bond, jacketed in misery, but there because there were two.

I don’t think I could’ve owned that poster if it were just Pinocchio sitting there, alone in the street, transformed and unloved. It’s the two of them, together, not speaking, that makes it.

That January, my grandma got ready to swallow that single pill.  The moment seemed to extend like the blue in your eye after a camera flash.  I imagine that she considered the amount of fight that was left in her during that time. I know she’d been done in by successive hours in a chair with a Star magazine, a needle perforated into her breast plate through a tiny port that pressed against her like a small battery under a Kleenex.  I’d pick her up from the doctor’s office at times in the afternoon and she’d be situated along the perimeter of the room. There were empty seats–permanently vacated?  Had these people been saved, died, moved to a different hospital? What about now with the Thanksgiving runners around her legs like lists of not done yets. The clock ticking. Her wrong colored fingers. These thoughts packed the emptiness and fit around my grandma and me like the withheld name of the pill. Not asking, not saying was the magic and it filled in the spaces.  But there was so much space.

I watched her with that little pill in her hand, it, a compact nub of potential. I sat with her and whispered fierce statements in my head. We’re in this together. We are not done here yet. Think of these out loud—their hope and buoyancy rising around our necks like ill-fitting life jackets, like nooses.  Unspoken, they become the sibilants of belief.

I sat there with my elbows on my knees, my chin resting on my fists, just as unaware on the edge of a couch as in a lonely street, wondering what can be changed, what can be moved, and how much say we have anyhow.

All this, and I watched her sit on the edge of that chair, asking herself things I couldn’t hear and answering them just as quietly.

Helen Hatch Inglesby, "Helping Grandma Sew,"

Helen Hatch Inglesby, “Helping Grandma Sew,”

Ron Estrada lives in Elmhurst, IL with his wife, Emily, and his two sons, Sal and Sonny. He is a writer of fiction and short nonfiction and can be read on his blog 8.187 (www.eightoneeightseven.com). He is also a regular contributor to Today’s Author (www.todaysauthor.wordpress.com) and is the co-owner of a literary greeting card company, Aporia | Chicago (www.aporiachicago.com). He loves garlic, Tom Waits, and Chicago Blackhawks hockey.

I’ll Have to Call It “Cancer”

There’s nothing else to call this post, because it’s all about cancer. But I hope you’ll keep reading.

I remember as a child listening to grown-ups talking about cancer. “The damn cancer. It’s everywhere.” They talked about it as if it were a living being—“evil” and “unrelenting.” I regarded their talk with a removed indifference as if they were speaking of bad weather. Even though I knew my maternal grandmother died of cancer before I was born. And both my grandfathers died of it before I was ten. And my uncle had been battling it as long as I could remember.

The cancer finally got that uncle, Jack. He died of leukemia in his 40s. His wife, my aunt Patty, was diagnosed with breast cancer later that same year. She underwent a mastectomy. That was sixteen years ago.

When I was in my late 20s, I heard of a younger acquaintance of mine who had lung cancer. We were not good friends—I was a senior in college when she was a freshman—but I knew her. I read the blog she wrote during her last months, and wept at work. She was not a smoker.

I thought of her recently when I read an essay in HerStories that remembers a friend who also died young of cancer.

My mom’s best friend, who might as well be my aunt, battled lung cancer a few years ago and underwent surgery. She’s been clean for awhile, although the doctors recently found a “suspicious” spot on her lung. She’s waiting to hear what it is.

Remember Michelle? She was my first friend. We grew up next door to each other. Her mom has cancer for the second time.

So does the man who lived across the street from us growing up. We often played Capture the Flag in his backyard with his children.

So does my aunt. Again. She recently found out she has the BRCA-2 gene and so, in addition to her two mastectomies, chemo, and radiation, she will also have a hysterectomy. My mother will be tested for the gene; if she’s positive, so will my sister and I.

A friend of mine often posts links on Facebook to the blog of her friend, the mother of Superman Sam, a seven-year-old boy battling leukemia. I never clicked on the links—I just couldn’t—until a couple of weeks ago. It turned out that day’s post was about the return of the cancer after a remission, and the prognosis was not good. One of the best, and worst, parts of being a parent is the ability, for better or worse, to empathize completely. My son does not have cancer. But as I read the mother’s words, my breathless sobs were for that boy I don’t know and his mother, and for my own son.

I don’t regard cancer with indifference anymore. Not even close.

Why tell you all this? Because this blog is my bully pulpit. Today I’m going to use it for a selfish purpose. Today is my sister’s birthday.

She smokes. And for the first time, I’m deeply understanding why my mother has begged and begged her to quit. I’m realizing that it’s completely possible that I will not have a sister to grow old with. To go on road trips with. To obsess over Mumford with. To spoil my children. And to know, one day, her own.

So today, in this pulpit, I’m asking her to stop smoking.

Our uncle, our aunt, our grandparents, our neighbors, our friends, and that precious little boy, did not have a choice. For now, you do.

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What You Leave Your Kids

I took my mother’s voice for this piece, and wrote from memory. It’s as true as it can be.

I knew something was up when my dad offered to drive me. I’d been home for a week on summer break and headed to my boyfriend John’s house. I didn’t need him to drive me, he never drove me, so that was the first thing. Then he asked my younger brother, Frank, to come along. We left my 12-year-old sister at home with my mother.

I sat in the passenger seat, Frank in back. He sulked into his madras shirt, a sixteen-year-old on a drive with his dad and sister on a Friday evening. We drove down the two-lane road, headed away from the suburbs to the country estates of Barrington in my dad’s new ’66 Chevy. I watched him drive, noticed that his hair was thinning just a bit on top, making his sideburns look bushy. He smoked with purpose, as if that were the only thing to do at this moment.

I rolled down my window and turned my face to the wind. Tall oaks hung over the road, silhouettes against a darkening sky. Dad pulled onto the gravel shoulder and turned off the car. He took two white pills out of his pocket and asked us each to take one. And we did. Somehow, we just did what our father told us.

He looked at us for a long while, waiting, and finally said, “Your mother has pancreatic cancer, and she will die.”

And for some reason, I thought of my maternal grandmother. She lost another daughter, a stillborn, many years ago. And I remembered that my grandmother once told me that after the delivery, when she held the dead baby in her arms, all she could think was, “Look at those little fingernails. She has fingernails.”

And now my grandmother would lose another daughter, and how different, how similar, would it be?

“The doctor said not to tell your sister. She’s too young.” He stared ahead, not at us, in quiet tears on the side of the road. “It’ll happen sometime this summer, probably.”

(It did happen that summer, six weeks later, and then we told my sister her mother had died.)

And then he dropped me off at my boyfriend’s house, and he and my brother drove away. I waved, lazily, wet cheeks drying, and headed into John’s house. Because that’s what we do, right? We go on?

June Allen Swan

The author’s grandmother on her 16th birthday, 1936