Taking a Hike

In August, my oncologist here in San Diego said that I no longer needed to see her on a regular basis. In cancer parlance, this is called being “exited”. There are other words, too, that describe this: “remission”, for example, and, god forbid, “cure”. These are words I didn’t think I would ever hear. I didn’t think I would hear them when I was a child watching errant strands of hair run down the drain. I didn’t think I would hear them when I was a previvor, because I thought I would have surgeries in time to avoid the need for remission all together. Briefly, after my first diagnosis and treatment in 2015, I allowed for the possibility that the word “remission” would come to me someday. But, after my second diagnosis and grueling treatment in 2017-2018, I let go of that possibility and set about learning how to live well in the shadow of my own death.

Crystal Cove State Park 2020

I headed for the hills, literally and figuratively. In 2019, I dragged my family on a financially inadvisable trip to the Grand Canyon, because post-cancer, I felt compelled to feel small. In 2020, in the midst of the pandemic lockdown, my family and I moved west. We stopped along the way at Bryce NP and Arches NP, entering the rugged expanse of the American west. I decided I would become a hiker. And in the years since, I have.

I’ve been walking all over this damn place. In Irvine, we lived close to Crystal Cove State Park, which has a giant canyon which rewards hikers with 280 degree views of the Pacific Ocean. On some trails, this view lasts for hours. Due to the pandemic and the high cost of living in California, hiking became the thing I did. In 2021, I hiked in Joshua Tree NP, Seqouia NP, Yosemite NP, Channel Islands NP, the Cleveland National Forest, and several California State, Regional, and County parks. In 2022, I even went on my first backpacking trip with my beloved Ward Women in Zion NP. Now, in San Diego, I am slowly exploring the available trails here. It is getting to the point where I start to feel terrible if I don’t get a hike in at least once a week. I can’t imagine this ever not being true about myself. It’s amazing how we can change like this, how we can become something we never could have imagined.

Channel Islands National Park 2021

When my oncologist released me, she said, “I think that if your cancer was going to come back, it would have by now.” I explained to her matter-of-factly that I had thought I would die of cancer; that all of the other women in my family who had gotten cancer had died of it, and so I had thought I would, too. My oncologist said, “Well, my advice to you is to go out and live your life.” I walked out of the oncologist’s office in a daze. I was elated. No–on second thought, I was…there are no words for the level of joy I felt. I did not even feel like a feeling. It felt like being posessed by light and warmth, as if I had in fact died at that moment, and I was in heaven. I told my family. We all cried tears of joy. And, the next day I was overcome with grief.

Yosemite National Park 2021 (photograph by my Dad)

I recently read a story of William Shatner’s experience of going to outer space. At the site of earth, Captain Kirk wept. Shatner is quoted as saying in an NPR story saying, “I was crying… I didn’t know what I was crying about. I had to go off some place and sit down and think, what’s the matter with me? And I realized I was in grief.” Shatner’s response to the view of earth from space has been theorized by SPACE PHILOSOPHER (who knew this was a job??) Frank Wright, as “the overview effect”, where astronauts are struck by grief. White describes the overview effect as “…a cognitive and emotional shift in a person’s awareness, their consciousness and their identity when they see the Earth from space…they’re at a distance and they’re seeing the Earth … in the context of the universe.” (NPR, 2022).

Yosemite National Park 2022

After my experience with cancer, Shatner’s response to viewing the world “in the context of the universe” makes perfect sense to me. When my oncologist released me from treatment, I floated hundreds of thousands of miles above myself, and, like Shatner looking at the earth, saw how cancer and the fear of it had desecrated parts of me beyond repair. Cancer stole the mother I wanted to be for my young babies. It stole my youth. It stole my aunt, and my grandmother, and countless other tiny and seismic things. I saw my own grief, though, in the context of the universe. I saw how right alongside this unspeakable theft were blue oceans and green mountains in my life. My babies grow into full-blown humans, leaving me in wonder and awe. My career summits peaks such that I can see ahead for miles. I remain surrounded by family, by love, friends old and new, a community of people who, every so often when it really counts, let me know that they are happy I’m still alive.

Like earth from space, this view of my own existence is something I can never “un-see”. I can barely even talk about it– it’s taken me four months to even know where to start (highly unusual for yours truly). But, recently I’ve found this new hike near San Diego, in Mount Laguna Recreational Area, in the Cleveland National Forest. I can’t quite find the words to describe it, but sometimes, when I hike, I have a version of the overview effect. In the context of the universe, my cancer and everything that came with it is microscopic, and I, myself, am mercifully larger. We are tiny, terrible, wonderful, and alive.

Mount Laguna Recreation Area- Cleveland National Forest, 2022

Thank you for reading. If you or someone you know is experiencing cancer, know that I am wishing you million mile views of the universe.

With all my love,

Emily

This is not the rebrand I had in mind.

Below you will find a draft of a blog post, unedited, I drafted on April 27th, 2020. I don’t know why I didn’t publish it at the time- perhaps it felt too uncertain, too risky somehow. And, as it turns out, I was wrong about a lot, and right about a few things, too. In any case, here’s this:

Well. I’ll get right to it. It seems impossible that any of this is happening in the world, and because I am self-absorbed, that any of this is happening to me. Is the world seriously telling me that after ONE CELEBRATORY BLOG POST about getting to move ON from illness, that in fact the ENTIRE WORLD would instead move INTO ILLNESS? Do you mean to tell me that I do not, really, get to skip off mindfully into the actual sunset? This is bullshit.

I can tell you that, as this is now the third to fourth time I have spent large amounts of time in my home due to health issues (if you count the modified bedrest I had with Vivian where I watched The Wire in it’s entirety), it’s easier. Chronically ill people are good at surviving long term because it’s the only choice. In the early days of this Coronavirus shut down, I advised my bereft colleagues to watch the sick and disabled people in their lives for tips. One million weeks later, many of the things I was sure I’d learned have humbled me. I’ve yelled at my children- and not in a nice way either. Today, I set the expectation that each person in this house find a way to entertain themselves without a screen and alone, each day, for at least 30 minutes, “SO YOUR FATHER AND I CAN HAVE SOME PEACE.” This was after the kids were like, “We just love you so much and want to sit on you at all times and tell you random things all day”. I have been stress-eating, stress-baking, stress-scrolling social media, trying not to sound off on anyone. I baked a loaf of bread that my family of four ate in six hours. I can’t be sure, since it was my first loaf and we’re isolated, but that seems like a short amount of time.

As a formerly sick person, I find I have little to offer in the way of comfort. Instead, I find myself loosely containing the anger and new grief accompanying the realization that even a worldwide pandemic will have my cancer in it, which I will see through the lens of my own illness. I am incensed that the words I’ve taught my brain to murmur peacefully, “Everything is temporary”, have indeed turned out to be true. In this case, the temporary state was one of joy, where it seemed like we might move on from illness as central to our lives.

THIS IS NOT THE WAY I WANTED TO MOVE ON FROM MY CANCER. I WAS PLANNING TO GRADUATE, TO HAVE A MOMENT OF SCHMALTZY TRIUMPH, AND TO LITERALLY SALLY OFF INTO THE SUNSET, WESTWARD HO.

Yet again, for the millionth (and not the last) time, I must re-learn that in fact there is no moving on from illness and grief. Nora McInerny (author and podcast host; see my next post for a media recommendations) says that we do not move on from grief, but rather that we move forward with it. I am alternately grateful for this realization, and livid it is true. The fact is, you can have one terrible thing happen to you, that can last for years, that rip a hole in your existence larger than what seems survivable, and indeed you can survive it only to experience the fall of civilization. The fact is that we do survive terrible things over and over again. This is the fiber of life, and is, all at once, so beautiful and terrible it makes me want to shout and writhe around on the ground. I wonder how my kids would react if I did that? Still want to smother me, kiddos? I bet not!

Anyways, no matter how much I tell you I know it’s impossible, I can’t stop wanting my experience with cancer to be meaningful for others, for the world, for what we know of existence. As time goes on, and as my friends die and I don’t, I am less confident that there is anything I can say that will insight meaning into the experience of illness. I don’t know about that anymore. I don’t know why illness happens. I don’t understand the relationship between illness and gratitude if gratitude is so fleeting and illness is ever-present.

And yet, I’m back to running again. It’s not going perfectly- there are little-known long-term chemo side effects that can make your feet and joints pretty painful. I walk a lot. But, I did think of one thing over the past few days that cancer taught me, and that I have no choice but to use now: you survive long times of danger, illness, and grief, by a) cutting it into small chunks, and b) by getting really clear about who and what you need in order to survive. Believe me, I hate this, but there is no way out but through. It’s possible that this came to me while I was running because that I use those two principles to make it through something that is enjoyable about 30% of the time: I do short intervals of hard-medium-easy activity, and I do it in view of the hospital where I got my cancer treatment, looking up at the window I spent so much time looking out. I remind myself of where I was, and that I am likely to be there again at some point, and I run.

To survive the pandemic, we need to cut this into smaller chunks. My cancer therapist calls this telescoping- you extend the telescope so you your field of vision is tiny, and you can only worry about that thing. You can only worry about sitting up in your bed. You can only worry about taking a shower. You can only worry about feeding yourself good food. You can only worry about getting rest, or getting the laundry done (ha!), or whatever thing feels small enough at the moment. So, for us, that looks like a work week and a weekend. And, it usually looks like one day a week as “do whatever we want” day. No cleaning. No restrictions. Just pajama dance parties and guinea pig mazes and screens until our eyeballs pop out. Because those are the only things we can worry about on those days.

And, the second thing, we have to get really clear about who and what you need in order to survive. This particular illness context has us draining our mental health in order to preserve our physical health. There are a million ways to make fun of social activities as “not worth” risking lives, and I think we should make fun of ourselves as much as possible, in general. But, on the other hand, this illness has asked us to use our reserves of social connectedness to fight it. I’ve seen people minimizing the impact of physical separation as less important than “staying alive”, but again, after having experience both life-threatening illness and long periods of isolation and loneliness, I’m here to tell you that they are both dangerous. This situation asks us to balance two nearly equal unassailable priorities: our own physical health, and the physical health of our loved ones and communities and our mental health and belonging. Make no mistake- being physically alone for long periods of time is what we do to punish prisoners. When deprive people of touch and closeness, we interfere in our own hardwired needs.

And so, similar to how you have to function when your body is restricted for other reasons, like cancer treatment, one must become crystal clear about their first tier activities, about the activities they must undertake, and in what ways, in order to survive each day. For me, I need to exercise in some way. I need time alone. I need time to write. I need to snuggle my children and have moments where they aren’t asking me for anything. I need to sleep. If these things aren’t happening, then nothing else is happening. Full stop.

If these things are happening at least 80% of the time, then the next thing I need is my people. I need my mom and dad. I need my friends. I need social media to continue to engage in stories of others’ lives and perspectives. I need my work, so I can continue earning money and pursuing my ambitions. MMK. That’s it, though.

There are a whole host of other activities, people, places, and things that I love, and that make my life joyful when they are in it. But we are not in the time of joy. We are in the time of survival, and therefore we can assume that the behavior people engage in means survival for them. And, if you’re not clear about what you need to survive, I suggest you spend time exploring it, and become as kind and efficient as possible about building your life around the things you must have. For me, perhaps because I am a woman, this has been work. Before I got sick, I thought that being pulled in a million directions, having no sense of my physical and emotional priorities meant that I was just available FOR ALL, always. And, when most of my ability to run around getting people to rely on me was washed away by my cancer flood, I had to find a new way to care for myself and feel worthy in the world. This involves compassion. Note my priorities start with my own body, and move quickly to my children’s. That’s really the heart of the heart, and the bud of the bud, and the root of the root, right there. And that means that we do healthy things that make us feel good and strong, and we also do unhealthy things, like make cinnamon rolls, which bring us comfort and make us fat.

Ch-ch-ch-changes!

Hello!

I haven’t written on my cancer blog in almost a year. My last post was about Arya, Game of Thrones (WHAT A BUMMER THEY DID NOT END WITH THE EPISODE I WROTE ABOUT, AMIRITE?), and cancer. When I wrote it, I was suffering pretty heavily from PTSD, which I knew a little bit about, but not much. If cancer was a thunderstorm, PTSD was the sunny, windy, deceptively cold day that follows it, where you go out in shorts and freeze. I was terrified of dying from cancer, of what that would mean for my family, and I thought I was in a short time of wellness before it returned. The pressure to remain vigilant, and get ready for the next storm, was unrelenting.

Now, almost one year later, things are a little different. Our entire family has put in the work of healing through therapy, and today my PTSD is mostly under control. This morning, I had my fifth clear PET scan since I finished my last treatment in 2018. While each clean scan has been a blessing, this one is especially liberating, because it means that my family and I can undertake some pretty significant POSITIVE life changes in the coming months. In February, I successfully defended my dissertation on teacher learning and makerspaces. Call me Dr. exclusively from now on. And, last week we visited the University of California-Irvine, where I’ve accepted a job as the Associate Director/Lab Manager of Creativity Labs, a research body dedicated to studying how people learn through making and the arts. So, in June, Matty, Henry, Vivian, and I will make a new home in Irvine, CA, about 10 minutes from the coast. We are beyond ourselves with excitement!

Readers of this blog know that I think happy stories about cancer are incomplete. There is no “reward”, there is no neat story of triumph. Because, eventually, I am going to die- that is still true. I’ve beaten nothing. Instead, I look at this period of my life as a time of great struggle, and also of growth, when things were really, really hard. And, right now, they’re not.

Vivian’s picture of San Clemente at sunset

I’ve been listening to this podcast and meditation series by Tara Brach, a buddhist psychologist based in Washington, D.C. While I never agree with everything anyone says ever, I have found comfort in her work throughout this past year, which was, in some ways, harder than the years I was in active treatment. Tara Brach talks about approaching life as if we are the ocean, as if we are both the water and the waves. The tumult I’ve experienced over the last six years isn’t outside of me, it is me. I have suffered mightily, but the juxtaposition between that suffering and the hope I feel now feels like inhabiting myself in a way that I could never have imagined. This is not a question of my suffering have “caused” this joy, nor does my joy validate my suffering- they are two different states of equal value. I am grateful for the joy I feel now, and I am sad for how I have suffered. Both. At once. Always. I recognize both as temporary, and this is what brings me meaning.

I plan to rebrand this blog in the coming months- maybe I’ll write about moving to California, when I’ve lived in the midwest most of my life! There will be so much to learn, so many bad days, so much schadenfreude when it snows in April here in Wisconsin. My children will grow, and annoy me senseless, and surprise me with their beauty. My husband and I will continue to find each other out. Our lives will be this weird version of new and normal, calm and unfamiliar. My social media feed will become a parade of all of us at the beach watching work week sunsets. And I will continue to live knowing how short our lives are, trying each day to be grateful for the small trials, to walk with compassion, to let myself be struck with awe.

Thanks for reading my cancer blog!!!

Before I go, I must acknowledge folks whose support helped me to reach these milestones. Thank you to: my children, Henry and Vivian, to Matty, my husband, and to my folks, Ann and Bob. Thank you also to my group at UW, the folks from the Design, Informal, and Creative Education Research Area in Curriculum and Instruction, especially Erica Halverson, my advisor. I love all of you and always will.

Me, at UC-Irvine. Go Anteaters!
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We say “Not Today.”

 

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Last night, I, like many humans across the earth who have access to HBO, spilled into a culminating episode of Game of Thrones entitled “The Long Night”. In this episode, for folks who don’t watch the show, we see a battle between the living (many of whom fight each other under less pressing circumstances in order to sit on top of the iron throne and rule the seven kingdoms) and the dead (led by the Night King). This impending confrontation is what is meant by the tagline “Winter is Coming”; winter means the army of the dead, and in this episode, they’ve arrived. My daddy says that when you’re a hammer, everything looks like a nail: for me, this eighty-some minute portrait of what it feels like to lose to death, only to be saved at the last minute, reminded me so strongly of what it’s like to have cancer that I had to write about it today.

First, a bit of context. I started watching Game of Thrones in 2015, after the show had been around for awhile. Each episode is an hour long, and in general, the show is not the sort of story I usually enjoy. There are tons of characters, creatures, and languages, and while fantasy fans find this a marvel, I often find it distracting from the most complex thing of all: feelings. So. In any case, I wanted to participate in the cultural conversation, and so while I recovered from my bilateral mastectomy, my first bout with chemo, a coinciding soft tissue infection that nearly killed me and resulted in surgery to remove an expander from my chest, I watched just about ten hours a day of GoT while taking copious amounts of narcotic painkillers. In that context, I wanted no part of my true feelings, and the flight of fancy represented by the show was more than welcome.

I’ve continued to watch it ever since, throughout my active treatment, and now, after my active treatment is over and my scans are clear. I take last night’s episode, and the episodes before it (and really, the whole “winter is coming” idea), as an allegory for how humans interact with death in general. We know that it is coming. We fight it anyhow. We prepare for it as well as we can, and when it is imminent, we sit by fires with one another and sing, or extend sacred rituals, like when Jaime knights Brienne. But, in the end, death wrecks our shit.

As I watched last night’s episode, it struck me that the feeling of being swarmed relentlessly by death mirrors the experience of cancer, especially when it’s genetic. Whereas folks like to think about cancer as a bounded thing, beginning with a bad scan and ending with a better one, it is actually more like the experience of fighting against an army of the undead, which grows bigger the longer you fight. The relentless, steady onslaught of zombies reminds me of the way that cancers eats your life, so that every component, every person, event, relationship connected to me has been bitten by it. My existence is populated by white walkers now, who both once were and still are people who fight alongside me.  I am the Night King.

Screen Shot 2019-04-29 at 10.44.47 PMBut, I am also Arya. A girl has been training for this her entire life. My grandmother, and my aunt, and my mother have been my teachers. They have shown me how to die, and how to survive; how to both sit with and rage against the idea that we are important and temporary, often in the context of ordinary daily routines, like on Mondays. They’ve taught me to look for supporters, like Gendry, The Hound, Brienne of Tarth and Sansa. They’ve taught me to be tireless in my pursuit of learning, to strive for excellence in what matters most to me, and at times, the importance of a well-wrought list. Here’s the deal: Arya kills the Night King because she has trained for that moment her entire life, and she knows his one weakness. Death’s weakness is that it can never erase the fact that I am here now.  I have trained my whole life to not only know that, but live it in the decisions I make. And so, I win. What do we say to the god of death? Not to-fucking day.

I have to say that seeing myself so clearly in a television show like this makes me especially anxious for the next episode. My fear is that the story line will say “Phew! We beat death. Thank god that is completely over. Now, back to who gets to rule this kingdom!” If they do this, the world will hear from me. Because that narrative is false. That is not what happens after you beat death. As someone who has now survived a few near death experiences, let me tell you what happens afterwards: paradoxically, you have a harder time living.  Once you become aware of how close death is for all of us, daily decisions become harder. In this context, what does the iron throne even matter? Don’t even get me started on writing a dissertation!

Living after you’ve nearly died is the ultimate “Now, what?”. I sense that Game of Thrones has just reached this crucial question as well, and I am begging for them to answer it honestly. I’d like to know a story about what humans, obsessed by power, do after they have faced down death. How does it change what they value, and what they are willing to sacrifice for what they want? Death does not die. It snuffs the arrogant armies we assemble to protect ourselves, bridges over the moats of fire we ignite around our hearts. It climbs through the walls of the places we’ve gone to hide, because it was buried there all along. It is an ordinary part of the infrastructure of our plans, of our decisions, of our relationships. But, the dagger to death’s heart is swung by a girl who is no one, and who knows she is no one. It does not get to command its armies to overtake everything and everyone, especially not our knowledge of the present, past, and future, because it is not more powerful than those things. It does not get to swallow everything we love or all of who we are. It just isn’t as powerful as that. Death is no match for devotion, or good training, or for a girl who has seen death and realized that facing it unites her with every other living thing.

I am no one.

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The Calm.

Hello!

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Henry and Viv. Chillin’.

I haven’t written this blog in awhile. Honestly, I’ve thought a lot about writing, but I haven’t felt like there was anything to write about. Then, eureka: I want to write about why nothing seems worth writing about.

To be fair, I’m also facing other writing struggles in my life, as my dissertation data collection has finally ended, and my dissertation writing phase looms. Also, I’m applying for academic jobs, which means LOTS of writing cover letters, teaching philosophies, etc. It’s a lot.

But, back to why nothing about my cancer life feels poignant or important enough to share: my cancer life is boring now. That isn’t to say it’s uneventful- things definitely happen. For instance, I finished chemo in June. Then, I went to London for work. Then, I came home. Then, I went to the cabin. Then, I came home. Then, I had radiation. Then, in August, I finished radiation. Then, I started Tamoxifen. Then, I got an infection and took antibiotics to clear it up. Then, everyone started school again. Then, I started a new job. Then, I started working out again.

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Vivian brings me breakfast in bed many mornings. That’s a granola bar on a cookie sheet.

See? Eventful, but unremarkable. I’ve been wondering why events don’t stand out as important, and I think it’s this: I have accepted that I am going to die someday from cancer, and that cancer treatment will just be part of my life. So, from here on out, I am just trying to “live in the now”, as they say. It is unpleasant to think about the past (which includes cancer treatment), and the future (which likely includes more cancer treatment), and so I am weirdly incentivized to think about the present.

Trust me: I pursue zen, and never achieve it, so this calm feels very suspicious. The other day I found myself asking my therapist if perhaps I am numbing my feelings out or something, as I don’t feel terrible, like I did after my first cancer treatment. She said she didn’t think so, since I was asking her about my feelings in that exact moment, and so it’s probably safe to say I’m feeling them.

 

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A new sign on Henry’s door. Yep! Pretty normal, I’d say!

So, nothing feels worth writing about because cancer is now normal for me. This is somewhat unfortunate, but not that bad, all things considered. I get to do yoga, physical therapy, and adaptive fitness each week. I get to do Weight Watchers to lose that steroid weight. I get to write a dissertation. I get to be a mother to my children, which includes pick ups and drop offs, making dinner, going to swimming lessons. You know, electrifying stuff! But, for me, it kind of is. People still stare at my hair or my port, but I don’t really care. I still get tired, but it doesn’t really bother me. I’m forgetful and mentally fuzzy, still, but it’s getting better every day. I think I’m content! This is new. What is wrong with me? (Nothing.)

 

I am extremely fortunate in many respects, but especially this one: I get the benefit of

 

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This is not normal, though.

 

grappling with my own mortality while my body is well. As a result, I feel like I have this knowledge that separates me from many other humans, who perhaps are not in the same phase of life. I sometimes feel lonely, but I’ve stopped expecting other people to understand what has happened to me, because they just can’t, unless they’re experiencing it, and even then, our experiences of death and illness are so personal that they’re hard to share. They say the secret to happiness is to have low expectations, and that is exactly what I have of others with respect to their ability to understand my cancer life. And, so I’m happy.

 

Anyhow, I think I’ll refer to this as my Seinfeld blog, as it appears to be about nothing. But, when you’ve been living a life full of a whole bunch of unpleasant somethings, as I have, “nothing” is a sincere improvement. I will totally take it.

The Frog is Boiling

Hello again.

I’m warning my readers now: if you just really don’t want to hear about how unpleasant chemotherapy can be, this post is not for you. Perhaps you have other stressors in your life. It’s ALWAYS ok not to read my cancer blog, but it is super ok not to read this one. I’m pretty sick, and I can understand wanting to stay away from that fact.

So, chemo. I have now had quite a bit of it. If you count my first go around (four rounds of taxotere and cytoxan) and my current endeavor (four rounds of adriamycin and cytoxan, followed by twelve rounds of taxol combined with four rounds of carboplatin), at the end of this I will have completed nineteen rounds of chemo in my life so far. I missed a round of taxol last week because I was too sick. I’m going to describe what “too sick” means, because again, one of the purposes of this blog is to report back from this experience.

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Henry climbs a tree a few weeks ago.

To begin, I will never forget waking up the day after I had my very first chemo treatment. I remember sitting up in bed and thinking I’d been beaten with a large stick about my entire body, perhaps while I was drinking several bottles of Jagermeister. I think about that first morning often, even though it was three years ago and I have been through worse,  because when I wake in the morning now, I almost always feel that way, only it’s normal and unremarkable. This brings me to an important lesson I’ve learned: humans can get used to anything. We can get used to chemo, or abuse, or living in wildly substandard conditions. Even if something will eventually kill us, while it’s happening, we can be used to it. I have seen this in others. We ask survivors, “How on earth did you survive that terrible thing?” The response is, “I didn’t have a choice” or, “I didn’t know things could be different”, or “That was just the way it was.”

As it turns out, during these past six weeks, I have been pretty sick, and that has just been the way it is. I am ranging from moderately to severely anemic, no matter how many steaks and greens I eat, and I’ve had to have three blood transfusions so far. The most troubling symptom of severe anemia is shortness of breath, because there is not enough oxygen in your body. Carboplatin, one of my current chemo drugs (whose last infusion will be on THURSDAY), notoriously attacks your red blood cells and platelets, which carry oxygen. After I receive carboplatin, the drug itself continues attacking cells for a three-week cycle. I suppose that before I had chemo, I would expect badness in my body to look like being stricken down by some sort of sudden-onset catastrophe. Instead, this drug makes you feel just a little worse, breathe just a little less, every day for about two weeks, until you cannot hold a conversation and breathe, not even when reclining. This happened to me last week. I ended up in the ER, undergoing the usual rigamarole to make sure I don’t have a pulmonary embolism. Thankfully, I never do.

This experience has led me to examine other indicators that indeed, unbeknownst to me, I am super fucking sick. For instance, the other day, two people tried to start IVs in my arm. They found a vein for a minute, but hardly any blood came out. Or, after I had my last blood transfusion, I noticed the next day that my face was “red” and began to panic. But then, I realized that it was just the color of a normal face.  It had been so long since I’d seen it! In another gross example, for several weeks, all of my food has been falling right out of me (dig my discretion). I try to maintain a positive attitude while this happens. The entire affair is reminiscent of that odd, unsubstantiated fact that you can boil a frog to death by placing it in cold water and slowly turning up the heat.

In addition, perfect strangers have been walking up to me in public places and announcing that they are praying for me. This is very kind and I’m pretty sure this means I look like I am going to die. Children stare at me. I get long looks from acquaintances, after they realize WHO I EVEN AM, that betray the quick list of questions running through their minds. I imagine it to be something like this, “Holy shit, she looks like shit! Should she be here? Should I stop what I’m doing and help her get back to her home or the hospital? Why is she here? Is she ok? What should I talk to her about? Should I ask her about her cancer? I want to know about it in case she is going to die. Should I ask her if she is going to die soon? What about when my children talk about her bald head? What is it that I am supposed to do or say right now? I have to go.”

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Vivian. Blue ensemble. Circa sometime in the last four weeks or so.

Perhaps a better tip off to the degree of my poor health is the level of concern and worry from my friends and family. It is an odd experience to sit in a hospital bed, or anywhere for that matter, and watch your loved ones fear for you. I imagine that this is what it might be like to die, if you’re very lucky and you are surrounded by loved ones when you do. But, again, as I’ve mentioned previously, all of this hardship is coming from the treatment, the ostensible cure, the preventer of death, not from death itself. But, in chemo, dying and not dying can look the same. It has been difficult for me to tell, based on how I feel, whether I am a safe or a dangerous amount of sick. The list of bodily concerns resulting from chemo could easily mirror the list of bodily concerns that precede the end of one’s life from cancer. How is this possible? How is it that both success and failure can look so similar? How is it that I can’t tell the difference?

In any case, I was too sick for chemo on Thursday, and I felt terrible about it. Another paradox of this treatment is that it doesn’t feel better not to get it. Ok, in many physical ways it feels MUCH BETTER NOT TO GET CHEMO. But, mentally, the fear that this one missed treatment will mean the difference between life and death does not feel better than the physical side effects. The upside of missing this treatment was that I got to go up to the family cabin for Memorial Day weekend and feel comparatively well. I left the cabin on at least a few occasions, even making it to the beach, and out onto a pier to watch my kids catch fish. I ate and slept. I watched the sunset over the lake.

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One of my sunsets at the cabin this weekend.

This morning, when we were leaving, Vivian grabbed a Powerade Zero out of the fridge and brought it to me (I drink SO MANY electrolyte beverages). Later, in the car on the way home, she said, “Mom, I brought you that drink so you could HYDRATE, because I want you to HYDRATE, so that you can be well again. You have really kind kids.” Again, I’ve been really sick, but in many ways, I am officially the last to know or admit it. At least, it seems that way if my four-year-old is starting to take an active role in replacing my electrolytes.

On Thursday, I have my second-to-last scheduled chemo infusion. I have my last carboplatin and taxol combination, and then the week afterwards, I have my last taxol, my last chemo infusion.  I cannot wait to be done. I cannot wait to begin getting well again.

Happy birthday to me!

Hello! Thank you for all the birthday wishes! I had a pretty good day, all things considered.

I usually try to blog on my cancer blog on or near my birthday. I’m 35 today. It is paradox to feel both so old and too young at the same time. I am often the youngest person in the room, and I often feel most comfortable that way. It’s hard to talk about the accompanying experiences of cancer with anyone who doesn’t have it, but it’s even more weird to talk about it with people who are just living an entirely different phase of life, where death seems far away, unpredictable, and relatively unconcerning. I like old people right now. I hope to be one some day!

In any case, I don’t have THAT much to report. I’m in the dregs of cancer treatment. My treatments are on Thursdays. They take all day, and I’m usually pretty tired through the weekend. I’ve got about seven or eight more weekly chemo treatments. After that, I get about a month off. I’m going to rest a bit, and go to London to attend the International Conference of the Learning Sciences. I’ve never been to London, and it’s been such a beacon through all of this–a real, grown-up professional opportunity to learn about learning from some of the smartest people in the world. After I return, I get a week at my cabin with my kids. Then, I come home to start 28 days of radiation. After that, I’m trying to get into a clinical trial that gives me a type of pill, called a PARP inhibitor, so that I can avoid another recurrence. The days of an “end” to my cancer treatment still seem far away.

Since it’s my birthday, I hope my reader will indulge me in one realization I’ve come to in the past few months. I have resigned to the fact that I am going to die sometime, hopefully not soon, from breast cancer. I don’t want to alarm anyone- I think it’s going to be a long time before that happens. I’d like fifty years, but I will settle for twenty. I realize that by writing this, I might make people sad. It makes me sad to think about a shorter life than I might have anticipated. However, for one, my prognosis at this time doesn’t indicate any immediate danger, so we can relax. But truthfully, I have been afraid of dying from cancer for as long as I can remember. I honestly cannot remember a time where that was not a whirring in the background of my life, not even in my most vital times. I have tried to outrun it, in my early twenties. I’ve tried to outsmart it with genetic testing. I’ve been as vigilant as a person can be about catching cancer early enough to treat it. All of these things have contributed to my survival, and I am grateful. But, I am exhausted from worrying about and trying to avoid death from cancer.

So, I’ve been taking time to think lately, about what life might be like if I did only have a limited time to live. Which activities would I continue? Which ones would I allow to fall away? The good news is that I wouldn’t change most of what I do. I wouldn’t change my career, or my dissertation, or the lines of inquiry I’ve chosen to pursue. I wouldn’t change where I live. I would choose my husband again and again. I wouldn’t change the amount of time or energy I get to give to my children. I wouldn’t change my family. I wouldn’t change my friends. I would DEFINITELY CHANGE the amount of time I spend getting pumped full of poison, but at this point, the benefit far outweighs that cost. I will watch very carefully to make sure that is always the case.

The only real thing I would change about my life is the amount I fear death from cancer,  the emotional energy I expend trying to manage that fear, and then the cover-up work I do to act like that fear doesn’t rule my life.  It’s exhausting to pretend like I’m not carrying death with me everywhere I go, and so I’m not going to pretend anymore. I think we all carry death everywhere we go, but it’s a privilege to be able to tuck that fear somewhere appropriate and unobtrusive, as if in a purse. That is not a luxury afforded me, and truthfully, I don’t know that it ever has been. So, I give up! I liberate myself from the expectation that I have to act in public like we aren’t all going to die, or that I’m not sick, or that sad things happen all the time, each day, right within the relationships that make life meaningful.

This acceptance of my own death, and what it means for my life, has brought me more peace than anything I can ever remember. I am NOT A FAN of people holding up illness or other hardship as like “steps in a journey” or “a process of improvement”, mostly because I think this developmentally-oriented talk often becomes a shame stick with which we beat ourselves, a judgy, well-intentioned, thing to say after we perceive ourselves as “having come through” whatever bad thing. You cannot invoke the concept of progress without invoking a goal, and my whole point here is that the goal is not at the end of this life we’re living, it’s now. It’s now, even if you’re watching Netflix too much, or working more than you’d like, or sitting in traffic. We’re not really in a ton of control about how we spend our time, and I’m just now becoming ok with this. For me, this peace with my own death, even if it ends up as momentary, feels like a sad, beautiful treasure that I might get to keep for the rest of my days. I’d like to learn how to wear my own mortality like a necklace around my neck, a jewel that doesn’t weigh me down, there for all to see.

So, this is 35. My mom says I was born old, and it seems she is right. I used to mind this about myself, and now I don’t. Old is very good.

And now, please enjoy this song I enjoyed on the way to my parents’s house today. It felt great to listen with the windows cracked and the sun shining, my kiddos laughing in the backseat.

Mo’ money, Mo’ problems.

Hello! Unknown

My son came home with a cardboard box the other day that he had received at a half-hour school assembly launching a school-wide fundraising campaign for the Leukemia and Lymphoma society. As a former teacher, I can visualize every part of this assembly. I can see myself scrambling in the morning to be prepared for the day and remembering that I will lose five minutes of each class because of the time taken out of the day for the assembly. I can see the kids wandering into my advisory, learning we have an assembly, and getting excited because it will get them out of less exciting things. It’s March, after all, three weeks before spring break, when all people in classrooms are just a little more pale, and little more irritable, and ready for a break. I can see my class walking down the hallway to the old gym, sitting in a row on the floor. I can see myself warning or even moving kids who I know are going to mess around if they sit next to one another. I can see the 5th graders at the front, beginning the assembly, knowing how they have rehearsed diligently for this opportunity. I can hear the PA thump and squeak as they begin. And I can see myself looking over my class and realizing that I have done nothing to prep this boy, Henry, whose mom has cancer, for a 30 minute school-wide delve into why cancer sucks, and how we can help by gathering our extra change and donating it. I can feel my stomach dropping as I go and sit right next to him, as Henry’s teacher did when this happened to him this week.

UnknownI found out about the assembly from Henry, who told me as soon as he came home. We were in the car on our way to Gilda’s Club, where we attend cancer support groups on Tuesday nights. He said, “We had an assembly about cancer today, and I was sooooo uncomfortable.” I could hardly even control myself from interrogating him about it. I peppered him with questions: What assembly? You’re supposed to do what? Where was your teacher? Did you cry? Did anyone tell you this was going to happen before it happened? He answered my questions, and added, “Did you know kids can get cancer, too? Lots of kids get this blood cancer.”

As usual, when he detected my agitation, he became evasive. Henry never wants me to get mad, and backs off when he senses my blood pressure rising. I tried to control myself. I seethed quietly in the front seat. How could the school do this to my son? It’s fine that they have the fundraiser, but why does Henry have to be a part of it? Could he not have sat this one out, or could we at least not have been notified and asked how we’d like him to proceed? I could have kept him home that morning to play Mario Kart with someone who actually has cancer. We could have engaged in a service project for our own selves, the wretched, blessed recipients of good intentions.

I, of course, emailed. I let the staff know Henry’s reaction to the fundraiser and assembly, images-1and that it might be good to check in with him that day about his feelings. I added that I would be happy to come and talk to Henry’s class about cancer, or send a letter home to parents supporting the fundraiser and alerting them to my illness, but I’ve heard nothing. Again, as a former teacher, I understand the complexities of this, I think. A mom having cancer is scary for 1st graders. Indeed, it is nothing that small kids should ever have to think about as possible, let alone experience. However, my son is experiencing it, and because it’s treated as a private matter in the place where he spends so much time and energy, he’s imploding. He cries at the drop of a hat, over seemingly inconsequential things. His energy and motivation are low. His worry levels are high.

As his mom, I want him to be able to tell his classmates when he’s having a sad day. I want him to be the recipient of love and support from those classmates, who in the past, have done the sweet things that kids do, like sending him little notes or going out of their way to include him in things he’s too sad to join. But, I don’t want him to feel “othered” any more than he already does. I don’t want “kid whose mom has cancer” to be his sole identity, just like I don’t want “woman with cancer” to be mine. I’ve received little response to my requests to send a letter home to parents, or to come and read a story to his class and answer questions. Now that they have a school-wide cancer-related fundraiser, now that cancer has become part of the public conversation in the school, I feel like I should be able to come and show that cancer is regrettably normal. It is not a boogie man. It is real. It is so real for us.

To be fair, the dichotomy between the school’s desire to keep our family’s struggle imagesprivate while publicly raising money for research to cure diseases like mine is one that pervades our society. Each October, our country turns pink and we get to talk about saving breasts. There are video treatments featuring breast cancer survivors interspersed through NFL broadcasts. How sad, we all say, that women get cancer in their breasts. We love breasts! Breasts are so great! We must stop cancer immediately, because the women out here are losing their boobies, which directly affects all of us, because we love those things! Each year I wait for October to end, and for any substantive conversation about healthcare, women’s health, environmental contributors to breast cancer, and supporting people who are sick by contributing to a real social safety net to begin. I am still waiting for that. images-2

And, there is no end. As a society, this is how we have decided to normalize cancer: by raising money to try to cure it. Don’t get me wrong- research dollars matter, and for what it’s worth, the corporate interest in breast cancer has meant that breast cancer has become one of the more curable cancers. When you compare this to less sexy diseases, like ovarian cancer, WHICH DOES NOT EVEN HAVE ONE RELIABLE WAY FOR EARLY DETECTION AND SO IF YOU GET IT YOU ARE VERY LIKELY TO DIE FROM IT, you can clearly see the difference that funding makes. But, it’s a Faustian bargain. These fundraisers mean that people with cancer become objects to be saved, instead of human beings to be known. Am I willing to be an object if it means more research dollars and a potential cure for my disease? I don’t know that I even have a choice.

Anyhow, I’m working with the school for a solution, and trying to take care of Henry the best I know how. I want to teach him to rely on his community, to reach out and let people know when he is struggling, so that he can experience what it’s like when that community scoops him up and supports him, like much of our community has done for us now and in the past. Right now, the situation resembles the scene in the film, The Help, when the women in Jackson, Mississippi, are raising coats for children in Africa at the same time they are working to build separate bathrooms for their Black domestic workers. Just as it did in the film, it is going to take real stories told honestly to expose this cruel hypocrisy, and while I didn’t ask for this, I will be the one to tell them.

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As an update, three chemo treatments down, thirteen to go! Almost a third of the way through! I remain in workable spirits, and am enjoying my few precious days between treatments when I don’t feel so bad. I’m looking forward to nice weather so I can sit outside. Here’s a recent photo of me not sharing a chocolate malt with Matty. Take this as your breast cancer awareness for the day. 🙂

Thanks for reading!

Emily

 

 

Hair

Hi!

This post is dedicated to my hair. I realize that this might seem indulgent, and that’s because it is. However, like many, many things in cancer (the disease, not the astrological sign, lest my super sweet gif below confuse you), things that might seem like yours, like hair, for example, begin to mean something to others.

The first time I had cancer, I did not understand this. I couldn’t really see beyond my own bald head, or the act of losing my hair. As it happened, I began to lose it when I was hospitalized for an infection, and my mom ended up shaving my head there. It was a combination of sad and liberating. It was meaningful that my mom shaved my head. I lost my hair about three weeks into my chemo treatment, so right around the time of my second treatment.

There are certain visuals of cancer that mark you as “a cancer patient”, and baldness, and the accompanying scarves, hats, and wigs, is a clear one. Baldness in women can signal a lot of things: illness, age, and very rarely, just badassery (i.e. Ani Difranco circa the mid-nineties). Personally, I try to turn the first two into the third; however, regardless of how hard I work to cultivate that confidence within myself, there are other opinions which matter.

My daughter, Vivian, is most attentive to my hair loss this time. Like last time, we attempted to make my hair loss a family affair, this time by letting the kids shave my head (with Matty’s supervision and help, of course…I wanted to keep my ears.) I bought clippers so we could all do it at home, and I also bought temporary hair dye so the kids could do IMG_0282something weird to their hair. Last time I had cancer, we had the idea that we would all shave our heads together, and somehow make this not weird. Listen, I have a new lesson I’ve learned, and I feel like sharing: there is no way to make shaving your head before you lose your hair to cancer completely normal and not scary for your children. This makes me feel helpless as a mother. This helplessness, despite all of my planning and efforts, is what I intentionally forgot, or blocked, from my first cancer experience. I am re-learning that even though I try, and I try, and I try to mitigate the sadness, fear, and pain for them, in the end, they still have to feel sadness, fear, and pain. I know that Brene Brown says that these vulnerable feelings are part of an essential process of building resilience and empathy for others, but as a mother, it is so, so hard to watch your own illness be a source of this emotional development in your small children.

Henry has been through this before- the hair thing doesn’t scare him nearly as much as it did the first time. He knows my hair will come and go. This time, his fear, anger,  sadness, and worry rest more with the illness itself. He wonders whether he will hurt me, just by being near. The other night as we were cuddling up after stories, I said, “Come on in here, closer.”

He responded, “Is it ok if I put my head on your breast? I don’t want to hurt you.”

I replied, “It’s ok. I’ll keep you posted.”

And, we cuddled.

But, Vivian. She’s four, and discovering her body. I am the female in the house. She will never remember a time when a feminized body does not include scars, and implants, shaved heads, and hormones (though I doubt she’s aware of the hormones, other than that sometimes Mommy is “not patient”). On the upside, my children are developing an early understanding of the concept of gender as social and internal, rather than tied to the mechanics of one’s body. As in, they know I’m a woman, or a “goyrle”, as Vivian pronounces it, and they also know, or are coming to know that the physical markers of womanhood are not always part of my body. They’ve seen me with breasts, without them, and again with implants. They’ve seen me with and without hair. They’ve watched me recover from a hysterectomy, and they know I can’t have any more kids. So, since the hysterectomy and mastectomy are permanent, the hair has become an even bigger deal for Vivian.

As such, about a week after we gave me a buzz cut, and I spray-dyed my kids’ hair, while I was at my folks’ house recovering from my first treatment, the kids wanted new hair cuts of their own. Matty gave Henry some kind of mod mushroom cut/pompadour. It looks great. He looks like Macauley Culkin circa Home Alone. And then Viv, ever so quietly, later slipped into the bathroom on her own with a pair of her child-proof scissors, cut her hair, and presented her locks to Matty in a leftover gift box. I know she’s four, and this is something normal four-year-olds do, but the symbolism of her watching me strip myself of my hair, my last malleable marker of femininity, doing the same, and then literally making a present of her hair to the man in her life, just rocked me somehow.

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I found out via pictures, and I felt so sad. I had wanted to provide a safe, semi-permanent way for my kids to participate in my transition back to cancer patient. As their mother, I wanted to control that. However, one of Vivian’s apparent purposes in life is to remind me that I don’t get to decide how other people react or process the things that happen to me. I don’t know why it is so hard for me to learn this lesson again and again. I want to protect them, and I can a little, but I must keep learning that my impulses towards protecting my loved ones must never cross over into denying them the opportunity to experience the range of emotions, even the painful ones, that help them make sense of what is happening to their lives. My job is to just be there as they do it. Ugh! Parenting is sometimes excruciating.

So, anyhow, my hair, like everyone’s, I’m sure, could be a lifetime montage of freeness, of bad hair cuts given by stylists who couldn’t cut thick, curly, Mexican hair, like I used to have before giving birth and going through menopause, of the moment I discovered how to style my hair curly on my own in late high school, or when I went short after Vivian was born and I had no more time to devote to it. But, somewhere along the way, the way I look became not only a symbol of my identity as a female, but also a mirror for my children, who are learning from me what it means to be a woman. Their knowledge of the female will always now include the particular ways in which females can become ill, and also, what and how they can recover, and hopefully, thrive.

By way of an update, I’ve just finished my second treatment. I feel alright, all things considered. I got a port installed yesterday in my chest, which will make my treatments go much more quickly! I look forward to shorter days at the hospital, and I also hope it doesn’t get infected.

I leave you with this, as a reminder that we must celebrate our hair.

via GIPHY

 

Magic.

Hello! For anyone just joining, this is my re-booted cancer blog, sort of an “EMILY’S CANCER BLOG: 2018 (cue explosions and like me walking towards the camera with an IV pole in a super boss way. Heavy metal riffs. Someone make me a photoshop, please.)

On the practical front, I had what’s called an axillary lymph node dissection last Thursday. It went extremely well, and yielded extremely positive information: of the 33 lymph nodes they removed, ONE of them, yes ONE, had cancer on it. That cancer was ONE, yes ONE, centimeter in size. My surgeon found it and took it out.

UnknownLet me break this down for you:  two months ago, I had a relatively routine follow-up PET/CT scan. On that scan, a lymph node lit up a little tiny bit. All the medical professionals said to do nothing and re-scan in three months. I said no, now would be better. My doctors indulged me, because they are great, and ordered an ultrasound. The ultrasound showed badness, located in a bad place, that had to be biopsied by like alpha level biopsiers. They biopsied it, and it was cancerous.

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This isn’t me- but this is where that lymph node was. So long, sucka!

The cancer was located about a millimeter from a major artery, and was also crazy close to my brachio-plexus, the nerve that CONTROLS THE FUNCTION OF MY ARM. Also, it was tiny, and indistinguishable from the fat and other lymph nodes around it.

So, my surgeons and radiologists were able to a) use an ultrasound to inject blue dye and a titanium clip into the tiny lymph node, and b) find it without cutting any arteries or nerves, and c) GET THAT MOTHERFUCKER OUT! (sorry for the cussing, but come on). pexels-photo-339835.png

I am telling you a VERY UNUSUAL story. Triple-negative cancer does not get caught this early. These lymph nodes do not usually get removed. What usually happens is these cancers recur aggressively, and then you are on chemo until you stop that because you’re going to die. I spent the last six weeks thinking this would be my fate, that I would follow my grandmother, my aunt, and my great-aunt into death from cancer, with the added blood-red cherry on top of small children watching. Normally, women with recurrences do not live much past ten years from diagnosis. My children are 4 and 6 now. I’ve been doing evil math for two months now, trying to calculate when and how it would be least terrible for my children to lose their mother.

But, hold up, BECAUSE GIVEN THE MEDICAL FACTS BEFORE US, THAT DOES NOT LOOK LIKE IT’S GOING TO HAPPEN. I mean, I could get hit by a bus tomorrow, but for now, I get to hope again that I am going to live a long life. pexels-photo-604694.jpegI am spending a lot of time considering dead people who may be protecting me from beyond. The terrible thing about BRCA families like mine are that there are usually lots of dead people, but then again if spirits have power, it’s nice to have a solid, experienced bench. 🙂

I still have to undergo chemo and radiation, which WILL SUCK BAD, but guess what else? On the day I had surgery, while I was asleep and doctors were taking cancer out of me, the FDA got around to approving the very first PARP inhibitor, called Lynparza (olaparib) to treat breast cancers like mine. The clinical trial results of this treatment were so promising that FDA approval was fast-tracked. So, not only did they get the cancer, but the treatment I’m about to have is the first one that has any promise at all that this cancer will not come back. You can’t make this stuff up.

So, we start with hope. Again. We start again with hope. And also laughter. A few quick small tales….

  1. While under the influence of pain medicine, I tried to DIY my own JP drain stitchimages, which was too tight and blocking the suction of excess fluid from my body. This one is for my medical professionals out there who will get all that jargon. I spent today sheepishly getting it re-sutured. These are the hazards of studying the maker movement and taking narcotics.
  2. Every time I leave, my kids expect me to return bald. Also, Henry would like to know just exactly what kind of “medicine” would MAKE ME SICK IN ORDER TO MAKE ME BETTER. He thinks this is ridiculous. Smart kid.
  3. Vivian calls my incision “Mommy’s scrape”. She’s got me in for regular check ups. Today she painted me a picture, showed it to me, wrapped it in a box, and then made me unwrap it and act surprised. She’s also making plans for matching pink wigs, and painting head scarves for me to wear.
  4. The week after New Year’s, our families pooled money and sent us all to Disney World in Florida. It was mostly magical, however, there was a moment when I began to cry while in line for the Dumbo ride because the Magic Kingdom was so crowded that I witnessed families turning territorial and wild-eyed, nearly feral to provide A GODDAMN HAPPY TIME FOR THEIR GODDAMN CHILDREN, and all of this when I had cancer, goddamnit, and we’d been waiting to ride this fucking Dumbo for like an hour. But then we splurged on a dessert party and reserved fireworks seating. It was beautiful. And then, from 9:30-Midnight, Henry and I ran around and rode the rides that were too crowded during the day. And THAT was magic.