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[icanseeyoufromhere]

In memoriam: Kendra Koivu

I can count on two hands the number of people I know who have had breast cancer. At this point I don’t know if that is a lot or a little. I suppose it doesn’t really matter.

My mom died of her cancer at the end of last year.

Today I mourn the loss of another dear person. And my heart is heavy with the weight of her departure.

Kendra and I went to graduate school together. We started tenure-track positions the same year, and we helped co-found, alongside two other women, an annual workshop that, today, brings dozens of scholars together to talk about mixed methods.

I loved Kendra, and I’d like to think we shared a special bond. I won’t say we were kindred spirits. Kendra had a lot of strengths that, unlike the rest of us, seemed to come to her naturally. She was remarkably firm in her beliefs. A straight shooter, she did not take shit from anyone. She was highly opinionated. I think it’s one of the things I liked best about her. She defended her ideas, her family, her friends with enviable ferocity and brutal wit.

She was also shockingly smart. In grad school or at conferences, she would give voice to complicated ideas effortlessly, as if they were obvious. As if they needn’t be said. (They always needed to be said, of course, as many—most?—of us were just trying to keep up with her.)

And, perhaps most obviously, Kendra was blazingly strong. She came to graduate school as a single mother with a small baby. She raised her first-born, Cosette, with next to nothing. I’m pretty sure she didn’t sleep. But she never complained. She rarely looked tired. As a (fairly recent) mother of two littles, I only now comprehend the enormity of this feat.

She gave birth to her second-born, Enzo, almost five years ago. Shortly after, she learned that she had cancer and that it was terminal. She raised her son with grace and integrity anyway. As a cancer survivor with small children, the enormity of this feat—to this day—quite literally takes my breath way.

***

Anyway. What bonded Kendra and me, beyond our shared scholarly interests, was breast cancer. And so, while Kendra and I worked on joint (academic) projects, we also shared treatment regiments and states of mind/being. This exchange was never equal. It couldn’t be. My cancer was Stage 1. Her’s was Stage 4. We both knew, from the beginning, that I would survive and she wouldn’t. Yet, there were days when I felt she carried the weight of cancer for both of us. She did the work that I couldn’t do. She was and always will be my hero.

The tragedy of her departure—for her friends, for the academy, and, of course, for her family—is beyond words.

***

It feels so easy these days to get caught up in the unbelievably unbelievable world in which we live. The easy route is to accept our fate. Engage in stupid, meaningless debates/fights on social media. Give up.

Here is the thing. Kendra never gave up. She knew she was dying, and she raised children; taught classes; wrote a book manuscript; accepted the position of director of her graduate program; published; edited a journal; earned tenure; traveled; engaged in quite a few of those petty Facebook fights in her own right; supported her colleagues.

Kendra chose life, despite the hopelessness of her illness.

She was undoubtedly a role model. As hard as it is, we must carry on her legacy.

On this point, allow me to be somewhat controversial. To say, “fuck cancer,” is no longer enough. The sentiment is too obvious. We all want to fuck cancer. After all, it’s killed so many people we love.

Kendra’s life, however, is a lesson in choosing the less obvious, more difficult road. And so, in her name, I will be kind. I will speak my mind and try to do so without fear. I will lift others up. I will be gentle to myself and hug my children. I will call bullshit when I see it. I may not accept the things I cannot change, but I will live in spite of them. I will write, read, think, joke, laugh, cry.

I will do all of these things knowing that, of course, they won’t solve the immediate problem. Kendra is gone. Our world is forever a little less bright, a little less sharp.

My sadness, like her impact on those of us who knew her, is infinite.

[icanseeyoufromhere]

This must be the place

Over the past weeks, I spent quite a bit of time sitting in the swivel, gliding chair my mom gifted us before Magdalena was born. It was nestled in the corner of our bedroom, next to French doors that we rarely opened but that let a lovely morning light in when we forgot to close the blinds. I sat in that chair so many times, not just to nurse (which was its original purpose), but also to read, to recover from chemo and surgeries, to give myself a timeout when my kids made me feel crazy, and, when my body let me, even to nap.

It is a comfortable chair, although at night when I’d go to stand and put my (finally) sleeping child back in her crib, the force of my standing, even if I did it as gently as I could, kicked the swivel back, loudly, against the wall. The noise would wake my babe up three times out of seven—enough to be really annoying but not enough to keep me from using it again the following night.

From the viewpoint of that chair, I saw so much. I saw, for example, our enormous, king-size bed. We spent OVER ONE THOUSAND DOLLARS on it. (I use caps because that’s how I say it in my head, every time I think about it.) We bought it just when we moved into our home, after we had returned from living for several months in Argentina. Camilo was barely one, and co-sleeping with him, alongside my just under six foot tall husband, in our double bed (yes, you read that right, a double) had become unbearable. So we bought this ginormous bed. Shortly after we made the purchase, Camilo decided he preferred his crib after all. It’s one of the most expensive things we own, and it’s the best bed we’ve ever had.

Just last week, after months of planning and weeks of packing, we moved that bed, alongside all of our other worldly possessions, to Argentina.

I cannot say this—I sometimes can’t even think about it—without feeling weepy.

I am over the moon about this change, I really am. Matías is Argentine, and I am so happy to take Camilo back to Argentina and to introduce Magdalena to the country. I am thrilled to see his family. I’m excited to work at one of the greatest universities in the country as a part of my Fulbright award. I love everything about this move. Except, of course, for everything we are leaving behind.

And by “everything” I mean our friends, of course, and my big, light-filled office at the University of Arizona. I mean the ease of life that we had. Tucson was an easy place to live. The people were (mostly) nice. The weather was (mostly) great. Most things are a ten minute drive away. My brother and sister and their families were only a three-hour flight away (one of the only non-stop flights out of our tiny, comfortable airport—travel was pretty easy from there too).

What makes my heart feel heaviest, though, was leaving our house. This rather tiny but completely cosy single-family home, which we rented for three years.

If I’m being fully honest here (and I try to be), I had a love-hate relationship with the place. Frankly, it was a bit too porous for my liking. We had more critters run through the rooms in the middle of the night than I’d care to acknowledge. The pipes in the bathroom made a constant groaning noise when it was warm. (It was warm there a lot.) It had concrete floors. They were beautiful, but they showed every crumb after dinner and each grain of sand my kids brought back from daycare. And they were so hard—half of my parenting there was spent warning my kids they would “crack their heads open if they keep rough-housing like that!”

But it was our home. The home where Cami took his first step and where Magda was conceived and grew in my belly. The house received her upon her birth, and, with time, it saw her take her first steps too.

I was in that house when my doctor called with the news of my cancer. Shortly after, I opened its front door to welcome my kids home from daycare and to inform Matías of the diagnosis. It was in that house where he hugged me, where we discussed treatment and prognosis, where I contemplated my mortality at night, in our giant, expensive, comfortable bed.

I often called my mom from this house, telling her of my treatments while she talked about hers. I wasn’t in the house when my mom died (I was lucky enough to be with her), but I was there to grieve. The house watched me manifest my grief in its myriad, sordid forms: tears, rage, anger, depression, alcohol use, more tears…

A move is, by nature, disruptive. It quite naturally conjures up all kinds of emotions. I know this. But our tiny, lovely house in Tucson saw us go through so much. Life. Death. Illness. (Are those the big three? It feels like they should be.) And while I will bear the weight of all of that experience for the rest of my life, I may never step in that house again, where it all happened. It’s unimaginable, really.

To make this move happen—to successfully take my post-tenure sabbatical year (and perhaps longer?) in Argentina—I had to receive the all clear from my doctors. I saw each of them over the past few months. I received instructions for follow-up appointments and monitoring.

You know what? Even if we stayed in Tucson, I probably wouldn’t have seen any of them for at least a year.

And so there’s that, too. The finality that comes with having been diagnosed with cancer and successfully moved past it (for now). Of surviving chemotherapy and immunotherapy and six surgeries and hyperbaric oxygen therapy and early menopause. My plastic surgeon quite literally removed my (last?) JP drain the day before we boarded the plane to head south.

The good news, of course, is that with a new country, a new city, and a new home come new experiences and new opportunities to make more memories. Indeed, our house in Buenos Aires is beautiful. It is, in many ways, the opposite of what we left behind in Tucson: big, airy, with tons of natural light and two stories, and even a separate little space (not unlike a Tucsonan casita) for making asados on the weekend. I haven’t seen a critter just yet on the inside, but a neighborhood cat likes to spend her evenings in our backyard. We have an open garage where our kids can play ball and learn to ride bikes. We live beside a beautiful, massive public park and have most of what we need (groceries, diapers, wine) at just a few blocks’ walking distance.

Our life here will be wonderful. And, of course, I’ll continue to think about cancer and genetic mutations and life in general from this new perch. 

But that tiny house—where our life evolved in ways both imagined and unimaginable—will be so incredibly missed.

Here’s our (messy) back patio, on Easter, aka, the day we have chocolate for breakfast: 

Camilo playing trains in our living room:

Magda jumping on our massive bed, singing “Five Little Monkeys,” while I fret over her bumping that cute little head on the concrete floor.

And, in case you were wondering, we really did move everything to Argentina: 

I’d be remiss if I didn’t include some pictures of our new, beautiful place in Buenos Aires: 

To our lovely place in Tucson, here’s one last picture of goodbye. Peace out, little home. We love(d) you!

[icanseeyoufromhere]

On lists and lessons

March 26, 2018.

December 10, 2018.

January 14, 2019.

February 26, 2019.

April 24, 2019.

June 20, 2019.

These are dates that I’d like to say I’ll always remember, but I probably won’t. I mean, I am terrible with names, dates, all that good stuff. 

For example, I often confuse my kids’ birthdays. 

This gaffe is not totally unreasonable. Camilo was born on 9/18/15, and Magdalena was born on 9/14/17. Both are September babies, and all the other numbers in their birthdates sit in the ‘teens, really close to each other. But I’ve had people look at me twice, because I get the dates wrong. You do not want the receptionist at the ER questioning your maternity in the middle of the night when your kid has got croup.

So I’d like to say I will remember the dates of my six surgeries, but I am just not sure. 

Happily, I have this little blog, and now the dates are forever archived somewhere in the ether, for generations to come:

1. March 26, 2018. First (unilateral) mastectomy on left side, to remove cancerous tumor, with removal of lymph nodes and insertion of expander.

2. December 10, 2018. Emergency replacement of expander with silicone implant so that I could have an MRI of my ovaries. Fat grafting to help fill out the implant so it would look more natural.

3. January 14, 2019. Second (unilateral) mastectomy (prophylactic this time) on the right side, with insertion of expander. Excision on the left side to scrape out some remaining tissue that wasn’t fully cancer free and also to remove a patch of skin that was dangerously thin.

4. February 26, 2019. Total hysterectomy, including removal of tubes and ovaries.

5. April 24, 2019. Emergency replacement of expander on the right side because skin had become blistered and eventually ruptured. 

6. June 20, 2019. Replacement of expander with silicone implant on the right side. Fat grafting on both sides to help fill out the implants.

My kids’ grandkids didn’t even know they wanted this list! And now they have it. You’re (all) welcome.

Anyway, I have had six surgeries in just over 15 months. Four were planned. Two were not. My body has been through the ringer. I’ve taken so many drugs of so many kinds--antibiotics, opioids, acetaminophen, stool softeners, even a bit of valium; had lots of JP drains (including one currently); and have so many scars all over my torso, my breasts, and between my legs.

It shouldn’t surprise that, over the course of these medical procedures, I’ve learned quite a bit about myself. I thought I’d list a few of those lessons here, alongside (or just below, really) the list of dates of the surgical interventions that have marked my life (and my family’s life) since I had my first mastectomy last March 26.

A short-term thing (god, I hope it’s short-term):

1. I now go to bed with the reasonable expectation that I will be up for at least half the night (often more), unable to sleep. 

Early menopause has not been completely unkind to me. The hot flashes are hot, but they’re manageable. I’m feeling generally pretty good emotionally, although now when I get mad (not an uncommon thing, heh) I tend to get really mad, really fast.

But I don’t sleep. I mean, sure, I will fall asleep, often as early as 8:30 (because I’m so damn tired). But I will quite reliably be up again, sometimes at 10, sometimes at midnight, but always before 2 am. And then I’m up. Like, really up, often for a really long time. Hours and hours. With phone, without the phone (I know the screen messes with our sleep cycle), it doesn’t matter. And I am so fucking tired. 

During those sleepless hours, I spend a lot of time wondering. I wonder how long one can function with so little sleep. I wonder if lack of sleep can cause cancer. I wonder if this world will be around long enough for my kids to have grandkids. I wonder about concentration camps and my kids drowning in pools and if I passed along my genetic mutation to either (or both) of them. You get the gist. These are not pleasant musings. I try to shift course, meditate, play Wordscapes on my phone. I run through my old high school balance beam routine, over and over in my head. I get up, kiss my kids, drink water...I NEED TO SLEEP. So, so desperately. 

I’ve learned, in short, that early menopause for me means coping with temporary insomnia.

Other, longer-term lessons:

2. Each surgery has required at least a couple days of repose. I have learned, however, that I. Cannot. Just. Sit. Still. Four hours after my total hysterectomy I was picking up toys and sweeping the floor. You know, just some light housework after having a few reproductive organs removed. It’s rather sick. I’m not proud of this. My inability to lie in bed probably helped produce some of the physical setbacks and at least one of the emergency surgeries (#5. April 24, 2019). It has not, however, produced ANY FUCKING SLEEP. So go figure. 

3. I am a lazy medicator. I mean, I took my antibiotics every six hours for seven days, as per doctor’s orders. But I’m really bad with pain management. To wit: I still haven’t taken the 500 grams of acetaminophen that I was supposed to take two hours ago, even though I feel quite a bit of pain under my right armpit, where the scar is healing and the JP drain is protruding from my skin. It’s the same when I have a headache, or when I used to have menstrual cramping. I just ride out the discomfort, as if science hadn’t created tiny, magical pills to take away the pain. I don’t know why I am like this. I literally just typed about my need for acetaminophen. I have the acetaminophen right next to me, as well as a glass of water. And I still haven’t taken it! What is wrong with me? 

(I just took the acetaminophen.)

4. When I woke up this morning (after falling asleep some time around 4 am), my feet were where my head should be. As in, I decided to flip around and put my pillow at the foot of the bed. As a long-time poor sleeper, I, at some point along the way, realized that this shift in perspective could at times help me fall asleep.

Matias mocked me earlier today about this, saying something to the effect of: “What do you think that does for you? It’s ridiculous.” 

(Oh, the hormonal-induced RAGE.)

Setting aside my offense for a moment, let me put on my social scientist hat. There could be science at play here. Flipping the person is not unlike flipping the mattress, right? And there is loads and loads of research (read: un-verified websites like this one) on the benefits of a flipped mattress! So, yeah, when I cannot sleep, I have learned that turning around at night can help. Insomniacs, take note.

5. Finally, and perhaps rather cheesily, my body is fragile and also fierce. 

When I had the emergency expander replacement (again, surgery #5, April 24, 2019), my plastic surgeon used both stitches and staples to close up the space where the bad skin used to be. It was the most Edward Scissorhands-y of all of my surgeries. The suture crossed my breast, from about 2:00 to 8:00, just missing the nipple. It was creepy. I couldn’t look at it. I didn’t even document it with a photo, so I can’t share the evidence with you here. (Sorry...or, perhaps, you’re welcome?) 

In the matter of a 1.5 hour surgery, my body had been opened and then sealed shut, with metal and twine and glue. For weeks after, I looked like a sewed up ragdoll from the stories (and nightmares) of my childhood. 

My skin, so delicate and yet so robust. Today, you can barely see the scar. 

When I look at my JP drain, my scars, my new breasts, my newly curly hair (it’s called “chemo curl”), I think that we, as humans, are simultaneously strong and weak. So prone to damage, and also so highly resilient. Vulnerable to illness and yet up to the challenge of fighting it. 

I don’t seek to resolve this paradox. I marvel at it sometimes. I cry about it too. I’ve lived with it for months and think it probably best to simply describe rather than explain its existence. 

I will say this. The duality of our physical reality (its fragility and its ferocity) does give me hope, for my kids and for us as a society. (When I get real dramatic I extrapolate all the way out to humankind as a whole.) 

We impart pain, we receive it, we recover. We hurt and we heal. Hopefully, we learn at least something from the process. 

It’s been seven days since my last surgery, and I’m still spending a lot of time in bed, despite a (growing) list of work to do, an impending move to another country, and a house that is just begging to be cleaned. It took six surgeries, but I now know that rest is important--indeed, necessary--for our fragile bodies to recover their strength. 

Add that to my list of lessons learned.

[icanseeyoufromhere]

A love letter to partnership

My husband travels. A lot. It’s always been this way. When we came to Tucson so I could take a job at the university, I’d hold down the fort while he travelled for his job. Flying to South America (he works all over the region) is a long haul from any major city in the US. From Tucson, though, it’s even longer and often entails two, if not three, layovers. He’d come back exhausted. Meanwhile, I spent my solo evenings drinking wine and watching crappy television.

After we had our first kid, his trips—while still exhausting for him—became exhausting for me. When I was pregnant with my second, and our one-year old still didn’t know how to sleep at night, those trips felt excruciating. When our second was born, and we had two sleepless littles—well, you get the picture. His travel was (and is) hard. For both of us.

I’d like to say that I bore the burden of those trips stoically. But you all know me by now. I am vocal. I feel things HARD. And I like others to know how I feel. So, I made him suffer every trip. I’d complain constantly before he traveled. It became, at times, the only way I communicated with him. I’d grant him no mercy on his return: “You’re tired?!? What about me?” I was constantly resentful.

While I will not minimize the toll that these trips had on me as a full-time working mom, I have come to understand that my position toward my husband was hugely unfair. This was, after all, our agreement upon moving to Tucson. Sure, I underestimated what that would mean when kids entered the picture, but it’s not as if my husband lied to me or deliberately sought out trips to make my life more difficult. And, yet, this is how I often acted.

When I was diagnosed with cancer, Matías’ trips did not stop completely. How could they? They were the basis of his work, and he needed to keep his job. He did, however, minimize them to the extent he could. As a result, he went to every session of chemotherapy. He’s been there for all six (seven? I’ve lost count) surgeries. When he had to travel, my siblings, my mom, and even my friends came to Tucson to be with me. We also relied (heavily) on the kindness of our Tucson community. In short, we’ve made things work: His job, my job, our kids, my cancer. Somehow we muddled through.

I do not use this phrase, muddle through, lightly. I don’t even mean to use it figuratively. Through the past year, my husband and I have, to quote the dictionary, “coped more or less satisfactorily despite a lack of expertise, planning, or equipment.” We have, quite literally, scraped by. In my case, resentment—which was already at full mast before cancer—blossomed into this massive ball of anger and rage, and my preferred outlet for it all was my husband.

It has been just over a year since my cancer diagnosis and my first surgery—a year where I have processed, grieved, felt uncontrollable anger about, and (at times) embraced the changes that have happened to me. It has, without question, been a selfish year.  

Through all of it, I took my husband for granted. I didn’t do so happily or on purpose. But with so much going on, something had to suffer. I don’t say this to defend my behavior. Instead, I say it to acknowledge and honor him and all he did for me (and experienced himself) as I dealt with cancer.

I know now that partners are the unsung heroes in each cancer story.

All those feelings that I felt—the fear of death, the anger, the sadness—my husband felt them too. And while he, along with so many others, sought to help me work through these emotions, his feelings often went unacknowledged. So many people asked me (or him) how I was doing; very few asked about him.  

When I think about this now, my heart aches. I am so glad that I got cancer and not him. I am strong enough to fight cancer, but I don’t think I’m strong enough to watch him go through it. To sit with him, knowing there was little I could do. The helplessness.

Matías, though. Man. He didn’t just sit with me. He held my hand. He hugged me tight when I cried. He let me hurl all the negativity and anger I felt straight at him. He did all the parenting when I couldn’t do any.  

He also grieved. He worried. He feared that I might die. And, god bless him, he never once let me see it. He kept these things from me, so that I could focus on my own grief and worries and fears.

Can you imagine?

I can tell you right now, without a doubt, and with 100% certainty that if he got cancer, I could not be so selfless.

My husband is a hero.

I don’t mean to sugarcoat our life. Tomorrow I’ll go back to complaining about his dirty clothes on the floor and his never-ending travel. But today I want to declare to the world that I survived and at times even thrived during cancer thanks, in great part, to Matías. My gratitude has no bounds.

“You carry me along with you, Keep my spirit strong, you do.”

Today I want to thank, to hug, to celebrate all the supportive partners out there. 

And to my own partner, Matías: I love you with all my heart and all my soul and each and every old and new body part.

[icanseeyoufromhere]

Reconstruction, again

Here’s a fun experiment. Can a person write a reasonably coherent blog while blissed out on Percocet?

Let’s see...

Why, hello there. It’s been awhile since I wrote. To be fair, I’ve started three different posts in the recent past. I have not, however, finished any of them. They’re all in my draft box, waiting to be revisited. Still, I always find some reason to put them away again, incomplete, abandoned.

Sometimes I stop writing because of the hot flashes--the rapid onslaught of extreme heat that clouds my vision and provokes waves of nausea--that are now a part of my daily existence. (Early menopause is a real boob.)

Sometimes I stop because (Catholic? Female? Imposter syndrome-fueled?) guilt forces me back to my day job. I am officially behind on everything academia-related, and so my writing time should be focused there, not here.

Mostly, though, I think my writer’s bloc, if we can call it that, has been driven by the content of the posts I initiated. I was venturing into terrain that was less about physical changes--treatments, surgeries, jp drains--and more about processing the past year and everything that happened therein. Writing about that mental journey (ugh, I hate that term) is much more fraught than the mere description of the tangible consequences of cancer, I guess. 

Those posts will be written, I promise. But for now: Percocet! Oh yes. It’s pulsing through my veins yet again. It turns out that I’m not out of the woods just yet with recovery. My body, tired as it is, has had to endure yet another surgery. An emergency surgery--one that was planned just yesterday and executed early this morning.

For those who are keeping count (i.e., me), that makes four surgeries in under five months. I’m basically friends with the OR staff at this point. Operations are a part of who I am. 

So, what happened? 

Well, in a moment of (what we thought was) post-treatment optimism, my husband and I booked a week-long vacation to Playa del Carmen. We wanted to go somewhere and do nothing for several days. Nothing but swim, stare at the sea, sip on a margarita...oh, and take care of two small, wiggly children (of course). We had never taken an all inclusive vacation before. Our trips have always been of the active kind: go to places; see historical sites; walk, walk, walk. But, after the madness of the past year, we decided a different kind of vacation was in order. So we plunked down a pile of change up front; packed some bathing suits and sunblock; and hopped on a plane.

Oh my goodness. We are geniuses. This trip was perfection, even with two children. All-inclusives are like little bastions of paradise for parents. There were hotel-organized games, a kids’ pool, and beach toys to make sand castles. Our kids were delighted by the wild iguanas roaming the grounds, the ice cream that was available at every turn, and the elaborate theater performances each evening. We had unlimited snacks and drinks (milk for the kiddos; tequila for the parents). We didn’t even have to clean up the post-tornado-like mess of sand and toys and towels in our room. I didn’t want to leave. For six days, we really could relax, children and all. It was blissful. I was (and am) so grateful.

Okay, okay, but the percocet. THE PERCOCET. How did I get here?

So the one small catch of our vacation on the beach was that I was not allowed to submerge myself in any water (chlorinated or salty) above my hips. You see, a strange, circular, translucent spot of skin had developed on my right breast, where I still have the expander. I noticed this small circle a few days before our flight. In a moment of rare, proactive pragmatism (I’m really pretty lazy when it comes to post-op care), I decided to see my plastic surgeon. He gave me silver sulfadiazine, a cream that, when applied, increases blood flow to an area and can help strengthen fragile skin tissue. He then issued the water warning and sent me on my way, with a friendly bon voyage.

The thing is, silver cream and all, that little circular spot of skin grew. And grew. It expanded like a balloon, a swelling blister of skin tissue. 

(Do you want to see a picture? Actually, no. I think perhaps it’s too gross, even to be posted here, where I have shared so many of the gory details of my cancer treatment and recovery.)

Anyway, God bless my plastic surgeon. As I sent him almost daily pictures of the swollen growth on my breast (this kind of communication is like the opposite of sexting--”Here’s a picture of this God awful lesion on my boob. Oh yes, it’s oozing liquid. You’re welcome.”), he would tell me not to worry too much and enjoy my vacation. So I did.

When I finally saw him back in Tucson, the plastic surgeon told me the truth. The swollen blister-like growth was, in fact, a very big deal. It was very, very bad. The skin tissue was too fragile to support the expander. Blood flow was minimal. The alloderm that served as a buffer between the skin and the expander had, as a consequence, disintegrated. The papery thin skin tissue, which by then had ruptured, was sitting atop a troublesome cavity in my breast that would continue to grow, exposing my body to infection.

The only option was to remove the expander, wait for the skin to heal, and try to reconstruct the breast again. 

This turn of events, as common as it is with post-mastectomy reconstruction, was absolutely devastating. I have so much work left to do before I will be physically whole once more. I’ve lost two real breasts and now, with this surgery, a fake one. The healing process, even before we can reconstruct once more, can take months. My recovery is not behind me at all. There’s still so much more that my body must endure.

Thank god for the Percocet. I say this with the appropriate amount of respect that opioid use demands. I won’t be on it for long. But it’s allowed me to write this post--and process the enormity of this setback--with a certain amount of detachment, as if it weren’t really happening to me. 

Thank god, too, for vacation, and for plastic surgeons who let you enjoy that vacation before upending your foreseeable future with more incisions, more jp drains, more unknowns. 

My body must be reconstructed, again. And I must rebuild my outlook and my expectations for the future. 

By the way, and as a kind of postscript, allow me to emphasize that, lately, I have so many more good days than bad ones, even though I only seem to write about the latter. I know that my posts are heavy, both in terms of content and mood. I won’t apologize for this, because my goal with the blog has been to reveal the messiness and difficulties associated with a successful cancer journey (ugh, that word again). But I will focus on the positive in future posts. And I am, as ever, grateful that you accompany me as a write. Your time and attention are gifts. Thank you.

[icanseeyoufromhere]

Infertile

On Tuesday I underwent my third surgery in three months. 

Let’s recap.

In December, my need for an MRI provoked the emergency replacement of my expander on the left side. 

In January, I had my second mastectomy (this one preventive). They also had to re-open the previously reconstructed breast to scrape out some tissue in an area that was not fully clear of cancer (pathology revealed nothing, thankfully).

In February, and just five days ago, I had a prophylactic hysterectomy and bilateral salpingo-oophorectomy (BSO). My uterus, ovaries, and fallopian tubes were removed. (BRCA1 mutants have a high propensity for ovarian and other types of reproductive cancers. Removing these organs has long been a part of my preventive plan.)

Overall, in less than twelve months, I’ve had four surgeries, removing my breasts and my reproductive bits. I’ve undergone twelve weeks of chemotherapy and about four weeks of hyperbarics oxygen therapy. I’m roughly two-thirds of the way through my immunotherapy treatment (herceptin), and now, with the loss of my ovaries, I am about to go into early menopause.

It’s been a bit of a year, folks. 

***

After I had my second child, I knew that I was done with having children. I was nearing forty. I was tired of being pregnant. I was tired of the tumult of changes that occur to one’s body during and after pregnancy. I was tired of the lack of sleep. I was, quite simply, tired. 

I knew I was done having children. And yet. When I signed the consent form that noted, among other things, that this surgery would cause infertility, I had to pause and contemplate the finality of this choice. I would be infertile. I am, now, infertile. My ability to conceive is no longer. The choice to conceive is gone. Chemotherapy and breast reconstruction had made nursing impossible. Now, my body was stripped of yet another important function, that of having children at all. Overnight, I no longer produce estrogen. My body has been completely transformed. 

On the other hand, recovery from this particular surgery has been shockingly easy. Yes, there was post-operative pain (more on this below). There was also, as some of you who have undergone a similar surgery will know, quite a bit of discomfort. Laporoscopic surgery of this kind involves filling up one’s abdomen with gas. The gas gives the surgeon the space necessary to both see and remove the organs. The problem is that a lot of it remains after the surgery is completed. My stomach was (and still is) bloated. Passing gas was (and still is) an important part of my recovery. Who knew farting could cause so many people (the nurses, the residents, the attending doctor) such joy? 

(Does this stuff make you squeamish? It’s hard for me to tell anymore. These days I have no filter. Ask to see my boobs, I’ll show you! I’ve already shown so many. Talk to me about passing gas, and I’ll make you a cup of tea and sit down and really get into it.)

Anyway, the difficulty of this recovery is not overdoing it. I feel so good, even just four days out from surgery! But, as per doctor’s instructions, I cannot lift more than 10-15 pounds for at least four weeks. That’s FOUR WEEKS without putting my baby to bed in her crib or cradling her in my arms. (I haven’t been able to lift my 3 year old for months, thanks to all of the breast surgeries.) Still, when your doctor explains that the potential setbacks here include, among other things, your lower intestines trying to push their way through your vagina, you tend to take the no lifting restriction seriously. And, no, I’d rather not have my bowels floating around freely in my torso. A prolapse could provoke either type of setback. And I’d rather not inadvertently force an additional surgery just to give my kid a hug. 

(Anyway, my daughter, God bless her, is part monkey and has been climbing furniture since before she was one. If I want a snuggle I just have to sit down and let her shimmy up my legs like the sprightly primate she is.)

This forced rest isn’t a bad thing, I suppose. As I noted above, my body has been through the ringer. Indeed, when I contemplate the changes over the past year, the physical evolution I’ve undergone, it is, need I say it?, overwhelming. I look at my body. I see new scars, new breasts, new hair. I feel the loss of vital organs and wonder what will fill that space. Movements that used to be so easy--hopping out of bed, picking up my children, downward dogging--are difficult if not (temporarily) forbidden. I don’t know who I am anymore. At forty (okay, okay, forty-one), I have to learn to be me once more. I have a template to build from, yes, but there is still so much to discern...so much newness. How long will it take for me to feel comfortable once more in my own skin?  

***

The post-operative pain following a hysterectomy and BSO is akin to rather severe menstrual pain or contractions. The irony of this is not lost on me. Both types of pain--that which comes with a monthly cycle or when in labor--are now a thing of my past. And yet, there I was at the hospital, completely infertile, feeling the pains of my fertility one last time. 

If I sound ungrateful, I am not. I get to throw out my tampons years before most of my friends. My new breasts look okay (you would never know I nursed for years!), even if I can’t sleep on my side or stomach.  And, of course, I should now be cancer free in those parts where I was most likely to get it. My year of transformation is almost complete. I should only have one (minor) surgery left. There is lots, in other words, to celebrate. It’s important for me, however, to acknowledge the messiness of this cancer journey, and to respect that it has upended who I am (was). 

To wit: I was fertile, and now I’m not. Just like that. 

[icanseeyoufromhere]

Post-op #3

Oh hey. Don’t mind me. I’m just sitting here reading a book after my second surgery in a month (and my third over the past year):

In this picture, which was taken the day after surgery, you’ll see I’m with my coffee, a big cup of ice, a water bottle, that weird breathing tube exercise thingy they give you after surgery to keep you from getting pneumonia (I think), an oxygen tube to help with my breathing (and, presumably, help with my breathing exercises? It’s unclear), and, of course, my extra-large, hospital-grade socks, to ensure I WILL NOT SLIP while I am trapped in bed, unable to go anywhere because of a foley catheter that they’ve so generously given me after cutting off my right breast. 

So, yeah, the second, prophylactic mastectomy happened last week, on Monday, January 14. 

I’m home now, popping pills, looking back with nostalgia at the night they kept me in the hospital and I was blissfully unbothered by my children.

This surgery was planned. (The one in December, where they removed my breast expander to undertake an MRI, was not.) Everything went well, as far as I can tell. But they had to re-open, for the second time in four weeks, the scar on my left side to scrape out some extra tissue that wasn’t fully free of cancer. As a result, I’m recovering from both an incision (on my right side) and an excision (on my left). And while the pain isn’t twice as bad as after the first mastectomy, it’s definitely a lot worse. 

The real treat from this surgery was that I have not one, not two, but three JP drains hanging out of the sides of my torso (one on the left, two on the right). I was expecting two drains. The third was most certainly an unpleasant surprise. For the first few days post-op, I had an additional bulb that self-administered pain medicine every few hours through a small conduit inserted in the cavity between my breasts. All told, I had four tubes hanging off of my body for four days after surgery. (They removed the medicine bulb last Friday.)

It’s a good thing fanny packs are back in style (aren’t they?), because who wouldn’t want to walk around looking like this all the time?:

That’s me in my pajamas in my “konmaried” room (only for the photo: all of the dirty clothes were thrown in a pile just outside of the phone’s peripheral view. Consequently, the joy sparked was temporary). I have worn these green lovelies every day since surgery. Shirts that button up the front are basically a post-mastectomy requirement. 

To be honest, the drains are really dreadful. They are constantly tangled, thanks in no small part to my 16 month-old, who thinks it’s hilarious to pull on them, especially after I sternly say “no.” They are a pain to shower with. I can’t get the fanny pack wet, so the method I’ve devised is to throw all the drains in a Target bag and swap it from wrist to wrist as I rather in-artfully try to clean myself (because I presently can’t lift either arm above my head). And, finally, they really hurt! I mean, like, really hurt. Of all the scars from all the incisions/excisions from this surgery, it’s the points where the tubes of each JP drain exit my body that hurt the most. I literally cannot drop the oxycodone from my pill regimen because of these damn things.

The “good” news is that there is only a 50-50 chance that some of my skin on the right side is not healing (as in, dying; as in, see these previous two posts). My seriously awesome plastic surgeon is as perplexed as I am about a blemish near my nipple that neither turns lighter pink, indicating a bruise that is healing, nor turns deeper purple, indicating skin that isn’t receiving the blood necessary to remain healthy. We are, thank goodness, committed to not doing hyperbarics oxygen therapy again unless absolutely necessary. He promised to cut out the problem area before sending me back to that scary, hyper-oxygenated chamber of boredom.

In truth, I came out of this surgery feeling a lot of relief. Whether that piece of skin heals or not, I’ve removed two of the three problem areas that make (more) cancer such a high probability in my future. Once I have the hysterectomy and oophorectomy (to remove my ovaries), which will be scheduled in the next two months I estimate, then I’ve eliminated the most problematic places where cancer could grow. 

***

Camilo, my three year-old, keeps asking if I am as sick as Grandma. It worries me that he’s begun to associate hospitals and doctors with illness and not with getting better. Last night we spoke for quite some time about where Grandma was. (The picture of me in the hospital bed provoked, I think, his memory of seeing my mom in a similar bed during the last days of her life.) 

My heart breaks that he remembers Grandma in this way. But two things give me hope: 

1. We will remind him of all the wonderful times he spent playing and laughing with her before her decline; and 

2. Thanks to all of these surgeries, I will hopefully have a long, healthy, hospital bed-free life with my glorious, rambunctious, awesome, and rather poor sleeping children. For that blissful future, I’ll happily shove a dozen JP drains in a large fanny pack for as long as necessary.

[icanseeyoufromhere]

In remembrance

I’ve struggled for weeks with this post. I will warn you now, it contains sadness and turmoil. It might not be easy to read. (Although, who knows? I am only just writing it now myself.) But it is necessary that I write this, and so here I am.

On December 29, 2018, my beloved mom, Jane Marie Cyr, passed away.

Her death was not unexpected. She had been very, very ill for months. Her third (!) bout with cancer began in 2016. Unlike the first two rounds, this one was terminal. But she fought it for two years--two years in which she hugged her grandchildren, traveled, sent friends and family cards and gifts, checked in on her own kids daily, and rarely, if ever, discussed her disease. That last part is important. Until only three or four months ago you would never know that cancer was ravaging her body. Can you imagine? Cancer truly is all around us.

Anyway, her decline began at the end of August. In a matter of days she went from living on her own (lunching with friends, driving to the city, gardening) to needing help walking to the bathroom. The cancer, we found out, had spread to her spine and brain. She had leptomeningeal disease, a rare symptom of breast cancer that, funnily (ironically? tragically?) enough, is becoming more common now that we know how to keep breast cancer fighters alive longer. Is there an opposite to a silver lining? Because my mom was strong enough to survive cancer for so long, she became victim to what seems like one of its cruelest manifestations. Toward the end she could do nothing on her own. In August, my mom was in Greece on vacation, riding horses and marveling at the tones of blue around her. (Blue was her favorite color. Greece was her dream vacation.) By November she could not stand by herself. She could barely eat. 

These details are uncomfortable but necessary. My mother was perfectly healthy--her heart, her lungs, her skin, her everything--but for cancer. Again, can you imagine? Such a vibrant woman. Such a fucking awful disease.

Anyway, the months of her decline were a blessing and a curse. I spent a lot of time with her. I began mourning her passing in early September. I had time to grieve before the hard work of saying goodbye, in a permanent sense, began. I thanked her, told her I loved her, made sure my kids touched her, sat with her, gave her hugs.

But, as it turns out, my mother’s rapid decline took off shortly after I had reached a pivotal moment in my own work in therapy. In trying to comb through and better understand my weaknesses, we had come to the (inevitable?) point of discussing my parents and, in particular, my mom. Her weaknesses, as a parent and as a person, became points of contention. I hated the discussion; refused to admit to her imperfections; and avoided whenever possible the topic at all.

In my mind, my mother was perfect. To be sure, I know rationally that no one is perfect. But my mom was always the exception. To come to that conclusion was not totally bizarre. Ask anyone: My mom was kind and generous. She was beautiful. She never forgot a birthday. She’d stay up late to make cookies if she knew they were your favorite and you were having a bad day. She showered her children, and then her grandchildren, with praise and gifts and love. She was always trendy and looked ten, maybe twenty?, years younger than she was. She survived my dad’s death with grace and integrity. She battled cancer three times and never seemed the worse for it. She was, by many metrics, inhuman in her life.

Our in-therapy discussions of her flaws were like a slap in the face. They made me deeply angry. The image of my mother had become irreversibly tainted (because, once you see the chips in the crystal, how can you unsee them?). I stopped going to therapy. I felt betrayed.

And then my mom’s health turned. Her death was near, and all I could think about were her weaknesses. I cried a lot. I stopped writing. I barely worked.

You know, patience was never my mother’s strong suit. She liked efficiency and saw no point in putting off till tomorrow what we could do right now. But there is a (selfish?) part of me that thinks that my mom waited to die until I came out of the other end of the dark tunnel I had entered with my therapist. Indeed, over the months of her decline, I had the time to reflect on my relationship with her--the good, impossibly joyous aspects of it as well as its seedier underbelly.

In that time, my understanding of humanity changed. I began to see that one’s imperfections did not cancel out their strengths. Instead, they worked together in a symbiotic relationship, giving us nuance, shaping our character, making us unique. My mom’s flaws did not obscure her goodness. Instead, they made it brighter. 

What good is unconditional love if there are no conditions to test it?

My usually impatient mother gave me the time to work through these ideas. She waited as I traveled back and forth from Tucson to Chicago, juggling teaching and her care. She waited, still, on the night of her death, as I--her middle child, her gray-hair baby, ever the black sheep of the family--arrived to the hospice care facility. I was famished. I warmed up some leftover food in the room, ate it and even washed my hands before I took my place, next to my sister and brother, by my mom’s side. I took her hand and within minutes she took her last breath. 

***

2018 was quite the year for me. I mothered two small children. I finished writing my second book. I battled cancer. I underwent surgery and chemotherapy and endured serious problems during recovery. 

Without question, however, the hardest thing I had to do last year was say goodbye to my mom. Her way of being seemed, at times, inhuman in its brilliance. But my mother was unquestionably human--a paragon of humanity in all of its brightness and color, light and dark. 

I am so grateful to have known her. I am so proud to be of her. May she rest ever in peace, and may those of us who knew her shine even brighter in her memory.

[icanseeyoufromhere]

The all clear

I’m so glad and relieved to announce that everything appears normal on my ovaries. (Add that to the list of things I never thought I’d say.) The changes that did occur over the last six months mean that preventive surgery will likely happen in the very near future (something I had planned anyway). For now, though, I can ring in the new year with cancer behind me. I’m so grateful.

It’s time now to fully concentrate on healing from surgery...oh, and keeping my kids from being ridiculously spoiled over the next few weeks. That’s the real “joy” of the holidaze, isn’t it? Managing expectations. (Hey, you’ll get no complaints from me! I will revel in this normalcy--I promise.)

Many, many thanks to all of you for your kind words, support, and prayers. My gratefulness is exponential.

[icanseeyoufromhere]

The waiting

The kids are taking baths and reading books with their dad. Holiday music is playing, probably too loudly (and rather garishly) from the living room. Lunch tupperware and sippy cups from daycare sit uncleaned in the kitchen, right next to the uneaten scraps from a last minute meal of pasta, green beans, and orange segments (again, for the kids; there's nothing to show, just yet, for Mom and Dad). And I'm in bed, convalescing.

****

Two weeks ago I had an appointment with my gynecologist. The transvaginal ultrasound was routine--something that I have had every six months since my BRCA+1 diagnosis. The technician asked about two spots on my left ovary. I'd known of one on my right side, but these, it appeared, were new. When the OBGYN came in to review the image, she told me that they were echogenic (I believe that's the term) and very likely not cysts. The findings were concerning. They set off a fourteen-day whirlwind that involved one failed MRI, one successful MRI, and, in between, a rather dramatic surgery to replace the expander in my left breast.

Today I am recovering from it all and wondering if I might have ovarian cancer.

After the ultrasound, which happened on a Friday, an emergency MRI ("it was the soonest we could get you in") was scheduled for the following Tuesday. It turns out, however, that breast expanders like mine--and most expanders, really--include a magnet. The magnet makes inflation of the expander possible. Magnets inside your body, as you might imagine, are a big no-no when undergoing a magnetic resonance imaging scan. I could not, therefore, have an MRI--I could not have one at all--as long as the expander remained in my chest. Flustered, because how could they not know about my expander?!?, I rushed to work to sit through my students’ final presentations. I would have to wait to see my gynecologic oncologist to define the next steps.

I saw Dr. Chambers, my GO, the next day, a Wednesday. She was adamant about the MRI. We had a long conversation, and she remained adamant. I would need the expander removed surgically as soon as possible. I called my plastic surgeon; arranged to see him the next day; and went home, without any answers, to await our appointment.

On Thursday, I saw Dr. Larson. He was up for the surgery. We just needed to find an OR, and, given the time of year (a lot of elective surgeries take place in December, before one’s deductible is renewed), it could be weeks. He promised to do all he could to find an earlier date. I went home to wait some more.

On Friday, Dr. Chambers’ nurse called and asked for an update. The MRI was really important. I had nothing to tell her. We would have to wait until Monday.

Dr. Larson’s office finally called on Monday afternoon. My surgery would take place on Wednesday. For once, the stars aligned. If not for a last-minute cancellation, the earliest they would have been able to get me in for an MRI was December 31. Instead, it would take place the day after surgery.

****

The incidence rate of patients with two primary cancers is thought to be about 2-8%. Those of us with a high propensity for the disease sit on the upper end of that range. I found these data when undertaking a rather cursory overview of articles online. My gynecologic oncologist put it much more bluntly: this kind of situation--where a person has two primary cancers, practically simultaneously--is much more common than we would think.

****

Yesterday I had surgery. Today was the MRI. I’m in bed now, popping oxycodone and colace, forcing myself to rest instead of cleaning up from dinner or playing with my kids. After a grueling two weeks, there is nothing to do now but wait. And--need I say it?--the waiting is unreservedly and without question the hardest part.

[icanseeyoufromhere]

Soundtrack

It has been so long since I’ve written, I know. I have been a bundle of emotions--ranging from near-euphoric to near-catastrophic--and at some point along the way it became too difficult to summarize it all. 

So fuck it. I don’t know what to say (yet), and so instead I’ll resort to the only thing that has gotten me through the past few months, in all of their shocking intensity: Music. Specifically, the music I’ve returned to, over and over again, to mitigate the bad and amplify the good things I’ve felt. There is so much to share. So much great music. (Thank god! Because what else good has been going on as of late in this world?) My preference is to stick in some ear buds, shove my hands in my pockets, tip my head down, turn the music up, and walk. Very 1990s emo and all, thank you very much. That (headphones + loud music + the world around me none the wiser) is my safe space. And this is what’s playing, in no particular order:

1. Cautious Clay, “Cold War”

2. Animal Collective, “My Girls”

3. Frightened Rabbit, “Heads Roll Off”

4. Middle Kids, Lost Friends (the whole damn album)

5. Gregory Alan Isakov, Gregory Alan Isakov with the Colorado Symphony (again, the whole damn thing)

6. Gallant, “TOOGOODTOBETRUE”

7. Sufjan Stevens, Carrie & Lowell (for when I really want to revel in my melancholy)

8. Phospherescent, “C’est La Vie, No. 2″

9. Mates of State, Bring it Back

10. Ariana Grande, “No Tears Left to Cry”

[icanseeyoufromhere]

What a boob

You guys. It’s been a shit week. Truly shit. More on that later. 

Meanwhile, let’s discuss the words we use when we want to express anger or offense. We can call them negative epithets. Or swear words. 

I’ve just invented a new one. “Boob.” 

I know, I know. We’re supposed to celebrate breasts. They look good in a low-cut dress. They provide hours of fun for men and women alike. They give life, for crissakes. 

But my left boob is a real bitch. After giving birth to my daughter, that breast got an abscess and forced me to rely exclusively on my right breast to nurse. She was the one with the tumor (duh), the extraction of which thinned my skin so much that now I have a rash, just barely avoided an infection, and may very well lose the expander that has been implanted therein since March. 

What?! Yes. That’s right. If you look at my left breast currently, you can almost see the hard, thick, plastic skin of the expander pointing through at about 9 pm. The expander. Is about. To break through my skin. This is a thing. A real f**king thing. This is also news to me. Thanks, medical community, for fully informing me of the risks of breast reconstruction. I barely move now without sticking my head in my shirt to see if the skin on my breast has split. 

Anyway, if/when it breaks through (depending on who you ask, said split in the skin is imminent), I have to go to the ER and have the expander removed. I don’t know what happens then. I just know that the scar from my mastectomy will be surtured once more. My chest will be wrapped up with a bunch of white tape, and then...I cross my fingers? Hope the skin heals and accepts the expander once more? But can I trust that (ghost) breast to come through for me? After all, she’s been a real mo-fo over the past year. She’s been a pain in the ass. in short, she’s been a boob.

So when my (now) three year old acts up and throws a tantrum, you know what I call him? A boob. That driver that cuts you off when you’re in a rush to a doctor’s appointment? A boob. The person I am when I haven’t had coffee, haven’t slept sufficiently in many, many days, and haven’t gotten anything done as a result? A real, fucking boob.

Today, I was taking an Uber to Northwestern Medicine (where I am receiving treatment while I reside in Chicago for the foreseeable future--more on that later). The unusually chatty driver gave me some helpful advice, which I now pass on to you. Do you know what makes women 30% more attractive than men? (I promise I am not making this up.) We (us women, I mean) are sweet and kind. We don’t use swear words. This, by default, makes us more beautiful, more pleasing to the opposite sex.

What a fucking boob. Amirite? I mean, God bless her, but sometimes you just gotta dig deep and pull out a swear word. Nothing feels better. Nothing is more appropriate. And if that makes me 30% less attractive, so be it. After all, I’m about two short coughs away from breaking out of my skin. Literally. If that doesn’t deserve a “fuck” or a “boob,” what does?

[icanseeyoufromhere]

Feeling better

Almost three weeks ago I finished chemotherapy. Yes! I know! I finished. I’m done. Also, how could I have not mentioned this sooner?

Truth be told, I was really happy walking out of my last infusion. The nurses all congratulated me. They blew bubbles in a celebratory expression of my renewed freedom. No more weekly trips to the Cancer Center! (Now they’ll be every three weeks. More on that below.) No more highs and lows as the effects of the Taxol cycle works its way through my body! Eventually, my blood counts will return to normal. My immunity will recover. By all accounts, the worst of this cancer fight is behind me. 

The night of my last infusion, my husband and I ordered sushi and drank wine. The following week, we got a babysitter and went out with friends. My mom sent me a cake! (Which is actually a thing, can you believe it?!)

It goes without saying that I am glad that chemotherapy is over. But it is really difficult--overwhelming, really--to get a sense of what comes next. I mean, in terms of treatment, the “what next” is pretty clear:

1. I continue to receive immunotherapy (Herceptin) once every three weeks to finish out a year of infusions. I should be done with these by early May. While a bit of a time suck, these infusions are fairly quick (a total of two hours if all goes well) and have few side effects. 

2. I’ll have a second mastectomy (my second surgery overall), probably early in January 2019. At that time, they’ll replace the expander in my left breast (where I had the first mastectomy) with silicone.

3. I’ll heal from said surgery, hopefully without the help of hyper-oxigenated air.

4. I’ll have a third surgery, where they’ll replace the expander with silicone on the right side. (This will be a minor surgery.)

5. Finally, I’ll have a fourth surgery, which will likely include both a hysterectomy (removal of the uterus) and a bilateral salpingectomy-oophorectomy (removal of the ovaries and tubes), but may only involve the latter. (This last surgery remains undefined, as my gynecological oncologist wants to see how I bounce back from chemotherapy, in addition to other variables, before we make a final decision.) Additionally, like the second mastectomy, this surgery is preventive. As a BRCA-1 mutant (ha), I have a high propensity for breast and also ovarian cancer. 

6. I’ll take a bunch of drugs to control the hormonal explosion that will accompany the early menopause the final surgery will induce.  

In my mind, these remaining steps toward recovery are, for lack of a better term, ancillary. They are important, to be sure, but they are largely preventive. As such, they are secondary to the heavy-lifting that my body has already done. I gave up a breast and pummeled my body with toxic drugs. The tumor is gone. The diseased cells have been obliterated (we think). 

Here is the thing. Now that I am here--post-surgery, post-chemo--I no longer know how to define my relationship with cancer. For example, what do I say when people ask about my bald head? And they do ask, by the way, far more than I would have expected. I’ve been stopped at the gym, the grocery store, a Starbucks, Target.

“I have cancer.” (But do I still have cancer?) 

“I had cancer.” (Do I not have it anymore?) 

“I am recovering from cancer.” (Or am I technically still being treated for cancer, because of steps 1 through 6 above?) 

“I am battling cancer.” (But doesn’t that stop when the chemo stops? Or when does it stop?)

One might see this as a semantic discussion or just a minor quibble about temporal accuracy. After all, if I provided any of the above responses, it would be correct, plus or minus a bit of time. 

On the other hand, at least in my experience, it is hugely unsettling to have this experience with cancer--the surgery, the chemo, the constant string of doctor appointments, the fatigue, the pills, the everything--and then, suddenly, feel like it is over. Of course, it isn’t over (again, see steps 1 through 6 above). But the really intensive, invasive, “death to cancer” part is behind me. With the removal of the last infusion needle, the maelstrom passes. Just like that. I walk out of the cancer center and resume life as if the surgery, the chemo, the doctors, the pills never happened. The academic year commences. My kid gets sick. I grocery shop, run a load of laundry, put toys away. The daily slog continues.

But do I have cancer? 

A big part of me feels silly writing this down. I read what I’ve written and worry that I sound ungrateful, as if I don’t want the cancer to be over. I very much do want it to be over. I want it to be eliminated from my life, even as a future possibility...

Let’s put it like this. In a few hours, my husband will fly into our little airport in Tucson, and a week of flying solo as a parent will come to an end. A week which involved: one VERY. SAD. BABY (caps and periods here are totally merited) who, in addition to having a cold and teething, contracted an ear infection; almost three full days of caring for said baby because she couldn’t go to daycare; one toddler who woke up at 5-5:30 a.m. every day, even though he didn’t fall asleep until 9 pm each night; two new classes, because the semester just began; and one full weekend with two small children, which, frankly, is just hard when you are on your own. (Side note: Single parents are fucking heroes.) I should be--I am!--exhausted. Yet, I have been up almost every night, for hours at a time. Just kind of staring at the ceiling. Feeling calm, terrified, unmoored. Wondering, even though this cancer fight is basically over, if the cancer will come back. If I am doing enough to keep it at bay. If it will, eventually, kill me.

There is luxury in this particular existential crisis. I am lucky enough to have a curable cancer. I can worry about it coming back, because I know, at some point soon, I will be free of it. I will be able to say unequivocally that I had cancer. For this, I am incredibly grateful. 

When I contemplate this gratitude, I feel better. I still don’t sleep, but I feel better. 

I guess that’s what I’ll go with for now: Feeling better. What else is there, really, for any of us? 

[icanseeyoufromhere]

I’m a middle kid

Did you know that? Probably not. Anyway, it’s been a while since I’ve posted. And I have a big, fat, long post coming soon--promise! 

Until then, join me in rocking out to the new album, Lost Friends, by Middle Kids, which is the only thing that gets me through the “oh shit now I have to catch up on work before the semester starts” days at the office.

Huzzah! No days off for me!

[icanseeyoufromhere]

A day of chemotherapy

7:10 a.m. (one hour before blood draw): Apply Lidocaine to portacatheter to numb the area.

8:05 a.m. Check in for 8:10 labs (blood) draw.

8:35 a.m. Blood draw. There are some issues with the blood return once the port has been accessed, so the nurse flushes me with four saline packs. Have you ever been given saline through a port? You can smell it and taste it--it’s quite strong. Four of these suckers make me woozy, but the blood flows better and the draw is completed.

8:50 a.m. Check in for the chemo infusion. I grab some crappy coffee from the urn by the front desk. Then I wait. Specifically, I open my computer and work.

9:16 a.m. I receive a phone call, because the nurses can’t find me (???) in the waiting area.

9:18 a.m. They found me. 

9:20 a.m. I’m now sitting in a recliner in a (very cold) room, waiting for my warmed blanket (I declined the pillow).

9:25 a.m. Blood pressure and temperature taken. I request iced water and a yogurt.

9:35 a.m. I meet Cathy (my infusion nurse). She asks me a bunch of questions. I’m not in any pain. I feel safe at home. These are my side effects [we run through the list]. No, I don’t have an allergy to an “unknown drug.” Yes, you can take that off of my record (they never do). 

9:55 a.m. Cathy administers 4 mg of Dexamethasone (the steroid that helps prevent allergic reactions to the chemo).

10:15 a.m. A nice, older man, Joseph, who volunteers at the Cancer Center usually comes through around this time (or this stage of my infusion) to offer me a wide array of snacks and beverages. (This is so puzzling to me, as the snacks include decidedly non-nutritious choices, such as Doritos and Cheetos, and the beverages are, by and large, Coca Cola products--drinks that are often associated with higher rates of obesity, heart disease, and even cancer. Why are they offering us these products??) Anyway, I am in a new wing of the center today, and Joseph doesn’t seem to pass through here. So I disconnect myself from the IV machine to run to the bathroom and find some snacks. Sun Chips, to be exact. Not completely nutritious, but not as bad as Doritos...? (The Doritos are what I really want, guys. This is called self-control--or what counts as self-control these days.)

10:20 a.m. Cathy gives me 20 mg of Pepcid through my port and 8 mg of Zofran, in the form of a pill. 

10:45: Cathy gives me 25 mg of Benadryl. So far I have only received premeds, that is, the drugs that are administered to facilitate my tolerance to the chemo. They also make me incredibly groggy. I stop working. I contemplate, instead, what to watch on Netflix.

Note, too, that I’ve been here for over 2.5 hours, and the chemo infusion hasn’t yet officially started. And this, by the way, is an unusually fast day. 

10:55 a.m. Premeds have been administered. Now I wait 30 minutes, so the drugs can take effect, before starting chemo.

10:56 a.m. Chemo selfie #11 taken! I have to do this now (technically before the actual chemo starts), because soon I will enter a zombie-like fugue state of drugged out blitziness. 

11:25 a.m. Taxol (chemo!) begins (finally!). I’m totally bombed on drugs. It took me a few minutes to type this. Momma is groggy!

12:40. I’m done. 4.5 hours, from start to finish. They pull out the needle through which they access the port, and I’m free to go. I leave my paperwork and have to come back. I leave my phone and have to come back again. (Did I mention that the drugs leave me zonked? That wears off in an hour or two)

Later the anxious energy will come that keeps me up at night. That will last for about 2-3 days. After that, comes the fatigue. You know that feeling you get when you think you’re on the verge of the flu? The full body ache and the sudden need to crash into bed? That comes on Thursday night. I try to sleep as much as I can (which, with two kids, isn’t much), and by Saturday or Sunday I’m feeling better--a lot better, actually. Then, of course, there are the GI issues, which are just sort of a constant these days. They are a part of me now (insert eye-roll emoji here).

That’s been a fairly typical Tuesday for me for eleven weeks now. (Actually, it often takes more time from start to finish, because the premeds don’t usually come so quickly or there is some confusion about whether or not I need Tylenol or Herceptin. [Yes, I’m being serious.]) It’s not really fun, but it’s not so bad either. The nurses are lovely, and I am surrounded by people like me: bald, tired, annoyed, but smiling and cracking jokes anyway, because what can you do? We have cancer, and today is chemotherapy day.

[icanseeyoufromhere]

An (honest, hopefully) assessment on control. And, also, an apology.

I am a big fan of therapy. I have a therapist. She is awesome. I go by myself. I go with my husband. When Magda was little, I used to take her along too (although her’s was more in a passive, breastfeeding capacity). Anyway, my therapist loves that I have this blog. She loves less the fact that, ahem, I haven’t been fully honest with you about some things associated with my treatment.

Now. To be fair, my struggles with honesty sit squarely in the realm of omission. I have never lied to you, I promise! But today, my goal is to be more honest about some issues I’ve had during my treatment for cancer.

For context, it’s important that I tell you that I value control. It is something that I have cultivated from a very young age. Today it is not an exaggeration to say that it (control) has become something I wish to exercise at all times--over my life, my family, my choices, my everything. It is a big part of who I am. 

This desire for control has its benefits, to be sure. It has given me a certain amount of discipline in my life. I use control to guide my choices, and it, in turn, helps me (I think) in my job and as a parent.

My desire to control, on the other hand, my husband has not been so productive. (This is blindingly obvious, of course, but you’d be surprised how many hours of therapy I have dedicated to the task of relinquishing control--to the extent that I think I have it--over him.) Additionally, while it can be useful in parenting, there are certainly moments where I know I should just let my kids be kids; let the house get messy; and let myself relax and enjoy them rather than think about all of the things I should/could be doing to help them exist/grow/evolve.

Fighting cancer, by contrast, requires a lot of letting go. As the weeks of chemo have progressed, for example, I have increasingly lost control of my body. Remember when I said the chemo’s side effects were minimal? This is partially true: I’ve thankfully avoided the worst of what chemo typically brings. 

But--and here is where I admit to omitting certain facts--I have certainly experienced changes that were, at least at first, more subtle and therefore, I thought, more manageable. The steroids I have to take make me bloated. I have gained weight. They keep me up at night. To wit, it’s 3 am, and I finally just gave up on sleep to finish writing this entry. I am tired, as a consequence, chronically tired. Staying up past 8 pm is a small miracle. And the fatigue really cuts into the (few) hours of productivity I have in a day. Finally, while I may not have the side effect of nausea with my chemo, I have had a lot of GI issues. As in, frequent and painful GI issues. As in (okay, I’m going to say it, close your eyes if you’re squeamish) multiple bouts with diarrhea on a daily basis. 

The other day I went for a hike with my family and a dear, dear friend who was visiting. I didn’t make it ten minutes before I knew I needed a bathroom. There was, of course, nothing anywhere near us. I ran back to the car to find the baby wipes. I did not make it to the car. I ran off the road, found a secluded spot, and lost control of my body, yet again.

I know that this is gross. Frankly, I find this whole GI business terribly embarrassing. Full disclosure: I cried like a baby while I was off-roading my business. It is just so demeaning to lose control of my body. To not fit into my clothes. To miss deadlines for work. To fall asleep alongside my children, leaving my husband on his own every night for hours (the only alone time we’d otherwise get). And I am weak--yoga positions that were so simple, even just a year ago, are near impossible today. 

In sum, I fail every day--all day--to exercise control.

There should be some great life lesson in all of this. As in, I should be grateful, or something, to cancer for humbling me, once and for all, with this long struggle I’ve had with control. But, rather than let go, I desperately grasp at any semblance I might still have. For example, I yell quite a bit--at my toddler, at myself (in my head--I’m not totally bonkers), and, especially, at my husband. I shouldn’t minimize this. I yell a lot. I say terrible things. My behavior is, at times, unforgivable. Rather than accept that I have no control, I grasp almost maniacally at its vestiges. Consequently, I lose control in the worst ways possible (oh, the irony), without gaining the positive side effect of growth or perspective.

This admission is especially shameful, because, to the outside world, it might look like I’ve got this cancer fight under control. I live my life. I see friends. I post photos on Facebook. I write a blog, for chrissakes. 

A friend and fellow cancer survivor told me early on that, as a rule, I should not apologize for much of anything while battling cancer. There’s enough going on in my life, the thinking goes, that shouldering additional burdens is counter-productive. Misunderstandings, missed phone calls and thank you notes, and cancelled meetings and social outings are forgivable offenses that do not, as such, require open acknowledgement. 

But, man, I am sorry for this. Somehow cancer has brought out the worst of me behind closed doors. It’s, as I said above, shameful. Most days I think (or, perhaps better, I tell myself) I’m doing the best I can. And every day, inevitably, I promise I’ll do better than the last. I continue to try to exert control over my life, in any way I can, and I consistently fail at the endeavor. 

I haven’t learned a damned thing at all. I am infuriated by this fact. I am sad. And I am so, so sorry.

[icanseeyoufromhere]

Hair

One of the first things I thought about after my diagnosis was hair. Let me throw some science your way: We have a lot of hair on our bodies. (You’re welcome.) Chemotherapy attacks rapidly growing cells, including those in the roots of our hair. Consequently, it often causes hair loss. You can lose the hair on your head, your eyebrows, eyelashes, nose hair, armpit hair...any hair on your body, really. Cosmetic concerns aside, a lot of this hair keeps germs and dirt away. Losing that protective barrier is not fun. It causes near constant sniffles and watery eyes. There are side effects to the side effect of hair loss that are really disruptive to one’s life.

In my case, the hair loss didn’t seem so bad. To be sure, like many (women? people?), I’ve lived my life in complete and utter tension about how I look. Sometimes I feel like a total badass. Sometimes I avoid walking past reflective surfaces of any kind. Nevertheless, to me, the hair loss seemed decidedly more bearable than some of the other side effects that can come with chemo, especially the nausea (I really hate feeling sick), the changes in our taste buds, and the neuropathy, which I had during both of my pregnancies and, frankly, was really pretty terrible.

Moreover, I prepared for the hair loss. Several friends sent me hats of different kinds (thanks, guys!). I researched how to tie head scarves online. And, to keep the shock of the change to a minimum, I cut my hair in stages.

I went from having really long hair (that’s me on the right, with my mom and sister):

To short:

To even shorter:

To even shorter still (with my husband):

And, finally, to basically nothing at all (featuring my two adorables, Magdalena and Camilo):

The decision to go short slowly was purposeful.

I think a single change, from long to nothing at all, would have been too much for us--for me, for my husband, and especially for my kids. And, to be sure, when I cut my hair the first time, Camilo seemed really freaked out. But by the second cut, he barely batted an eye. When I shaved it off altogether, the wait at the salon was more disruptive than the cut itself. 

(Yes! I had the help of an amazing stylist--Lindsey Bridges--who cut my hair and then shaped and eventually shaved it for free! So amazing. If you can find support like this, lap it up! There’s no reason to feel terrible about your outward self when so much shit is happening internally.)

Lately, I shave my head about once a week. (I’ll complain a bit here. I mean, if my hair is going to fall off, can’t it all fall off, instead of just most of it? Taking a razor to my head on the regular makes me a bit queasy.) In all, the ritual has become a part of my routine. 

But you want to know what is NOT a part of my routine currently? Hair dryers, gel, hair bands, brushes, combs, spray... None of it! I deal with none of it. And, full disclosure, IT IS AWESOME. Never has getting ready for anything been easier. Being bald is pretty damn freeing.

Being bald in the blazing heat of Tucson’s summer ain’t so bad either.  

To be sure, not everything is shits and giggles in the hair department. After all, baldness has become the marker that one is sick these days, hasn’t it? It’s hard to avoid my cancer when it’s looking back at me in the mirror each day. And I regularly feel people staring at me (or, perhaps even worse, pointedly not staring at me) and my bald head. What a confidence killer. 

And there still is the fact that, on any given day, my belief in my badass-ness might be trumped by the Blue Man group-like profile that I now catch out of the corner of my eye when walking past a reflective surface. It’s jarring. It doesn’t feel like me. On my worst days, that reflection can break me. I want to curl up in my bed and hide out until the hair grows back. 

But it doesn’t take much to reset the mood. After all, for some unexpected and incredibly happy reason, the other possible side effects of chemo--the neuropathy, the nausea, and the change in taste--have not yet manifested for me. Can you believe it? Seriously, I give thanks every day since starting chemo that I can wake up and just live my life, without too much pain or fatigue.

Also--and I swear to God this happened--there’s this: The other day, my sweet boy, Camilo, was snuggling with me on the couch before bedtime. And he started rubbing my head and saying “So pretty, Mommy. You’re so pretty.” 

It catches my breath just to think about it. Who needs hair when one’s got a love like that?

Any day now, any or all of the other side effects might come, of course. In the mean time I try and keep my expectations low. I smile as often as I can. I do my best to hold my (bald) head high.