The Panic Room

I went for my first run of the year today. I don’t run entire distances anymore- I do the alternating walk/run method, and I love it. There is no panic about being able to “make it” somewhere, or “having to walk”: walking is built in, and expectations adjust accordingly. I spent today and yesterday trying to re-enter my body after I had to leave it for about a week. A lump in my reconstructed breast forced me into the panic room inside myself, a walled-off safe room meant to survive intruders and atomic bombs. It’s bare bones living there- when I’m inside the panic room, all I can hope for is survival.

The past four weeks have been some of the most stressful of my entire illness, which is surprising since I am nearly two years from diagnosis, and nothing really bad has happened, and I don’t have cancer. I haven’t been hospitalized. About three weeks ago, I got the flu, and I was misdiagnosed with pneumonia when I went to the hospital. I couldn’t breathe all that well, and a preliminary chest X-ray showed pneumonia, so they diagnosed me and sent me home, telling me to return if I felt any chest pain at all. They suspected that I could have a blood clot in my lung, because I had several of the risk factors, like recent surgeries, a history of chemotherapy, and the use of hormonal replacement therapy. Blood clots in your lungs, or pulmonary embolisms, can be fatal.

The next day, I had chest pain. I also had a cough. I thought that the chest pain was from the cough, but they had scared me so badly the day before that I went back to the ER. If you would like to see ER docs hop to it, tell them my medical history. A well-meaning resident came to tell me that in addition to all of the previous symptoms, I had an elevated D-Dimer, which is apparently the blood test that can indicate a blood clot in the lung. He said he was very suspicious that I had a pulmonary embolism. So, I spent about an hour waiting for a chest CT, afraid to move, thinking I might dislodge the clot and send it to my heart. The CT showed that not only did I NOT have a blood clot, but that I didn’t have pneumonia either. In fact, all I had was influenza A. The flu. I had the flu. The ER doc was like, never mind! Drink fluids! See ya!

I healed, but I had noticed another issue. I had a lump in my left breast. It was obvious, and prominent, on the top, where I’d had some fat grafted onto the implant to make it look and feel more natural. I sat on the information for about a week, waiting to make sure I wasn’t crazy. After all, I DON’T HAVE ANY BREASTS SO THE LIKELIHOOD THAT I WOULD GET BREAST CANCER AGAIN IS LOW (although, not zero- it can recur on the chest wall). However, I survived high-grade triple negative breast cancer, which is aggressive and likely to recur within five years of diagnosis, with the highest likelihood of recurrence between two and three years after diagnosis. So, I am on the lookout. Every small, inconsequential thing in my body could be the beginning of the end. Also, contrary to the first time I got it, I now have physical sensations attached to my fear of cancer- I know what I’m in for, and it ain’t good. My naivete worked to my advantage the first time in that I was blindly able to remain positive and I also didn’t ever see what next painful thing was coming. I was able to say, “Thank god that’s over!” when I passed through a particular phase and believe that it was over. This was a blessing!

Anyhow, I finally got in to the doctor last week Thursday for an ultrasound, thinking they would be able to see it as fat necrosis, which is a gross name for a benign condition where dead fat cells clump up after surgery. It’s a common thing in breast reconstruction. I thought they would send me on my way, and that would be it. Except it wasn’t. I had to have a biopsy, because they couldn’t rule out malignancy with ultrasound. They even tried to give me a mammogram with my reconstructed breast. Such a delight. Actually it wasn’t. It was like someone trying to put my fake boob in a vice that was too far away, and it showed nothing. So, I had to wait until Monday morning to have a biopsy.

When the radiologist told me that I would need a biopsy, I wasn’t really aware of it, but I left the whole of my body to get to my panic room deep inside myself. In my panic room, I don’t feel much pain per se, though it is cramped and uncomfortable, and I am angry as hell. Also, the walls are plastered with pictures of my sick self, my kids living without me, my Aunt Elena, images of sadness and pain. I pass the time there by thinking about the letters I will write to people to try to handle the fallout of a recurrence. In my mind, I had written the email quitting my Ph.D program. I had written the letter to get me out of my lease in graduate student housing, because I would no longer be a grad student. I had practiced the talk I would have with my kids to tell them I had cancer again. I wrote the emails to their teachers, to their school psychologists. In my mind, I wrote the blog post talking about my recurrence- it was mostly the “f” word. I had thought about what it would be like to rejoin our cancer support group at Gilda’s Club. All of these things ran through my mind between Thursday and Monday morning.

At the biopsy, like previous medical professionals had during invasive procedures, the radiologist wondered if I was ok during the procedure, because my face showed so little reaction to the fact that there was a gigantic needle in my breast. I wanted to say to her, of course I’m fine; I’m not even here. The body you are poking right now is far away from the room where I’m hiding inside it, and so I can hear ominous steps on the threshold, can hear my world falling apart, but I don’t feel it. I am safe in this little, small space where I go when things become too painful in my own body.

I mentioned this ability to hide in my own body, to have invasive medical procedures and not feel pain, to my therapist, and the look on her face was so sad that it reminded me of the thing I cannot escape: the fact that I have to leave my body because it is too painful sometimes is both one reason I am still alive and it is also very, very sad. Perhaps with more time between traumas, I will be able to stay in my body and experience the pain as a finite experience. Maybe I will be strong enough again, but right now, after two years of surgeries, chemo, infections and overall illness, I can’t.

As it turns out, the biopsy, thankfully, revealed fat necrosis. I am so thankful for this- I get to continue on with this life I’m trying to build for myself and my family. But, I’ve had to spend the past two days recovering from this experience of not having cancer. Not the physical part- I want to assure anyone who ever has to have a biopsy that they really aren’t that bad from a physical standpoint. But, it’s taken me two days to coax myself back into my body, out of the panic room. So, I went for a run today. It felt amazing. I cried, and not just because I am so out of shape. I listened to The Weepies, whose album Sirens is partially about recovering from breast cancer. I haven’t worked in a few days, which, if you know and understand where I’m at in my academic trajectory, is nearly sacrilege. But, as I’ve come out of the panic room into my body, it’s a mess out here! This body is exhausted from being ravaged by stress, and so I’ve been eating and sleeping to clean it up, get it working again. I’ve been holding my children as much as possible: driving them to activities, and stealing their hands to hold.

Tonight, I took Henry to karate. We’re working on controlling our bodies. We’ve both got a long way to go. In any case, I asked him what his favorite part of class was when we were on our way home, and he said, “It was the part where you were laughing so hard.” Then, he proceeded to tell me knock-knock jokes he’d been storing up from a book of knock-knock jokes he’s been reading at school, “to make me laugh again”. I forget that when I’m in my panic room, all the people who love me know it. My kids can feel it, even though I don’t tell them what’s wrong. That’s reason enough to try to never go there again.

I write about this here because I notice that there are parts of the cancer experience that are visible and well-known to folks without cancer, and there are other parts that are less so. The public narrative around cancer recovery is that you get cancer, you recover, and then you just skip off into the rest of your life. Um, I know it’s cruel to reveal this with Donald Trump as president and all, but that’s not really how it goes. It’s a chronic physical condition, for one thing, but more importantly, even if the cancer never comes back, that doesn’t mean the pain and fear is gone. I hope it is helpful to know this, if only to help you be conscious of your local cancer survivor and how their illness affects them, even if they are years into recovery.

As usual, thanks for reading. I am going to try to write a series of posts about post-cancer recovery life, for the reasons I’ve just mentioned. I hope they are helpful!

Love,

Emily

Reconstruction: Not for boobs.

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Me, lately. 

Hello! Long time no writing! I have been very busy, as usual. This summer I’ve been undergoing a process called breast reconstruction, and I’ve found that many people have no idea what this is or what it means. So, I’m going to spend a little time in this post teaching about it. I’m sorry if that seems boring, but honestly, I’ve thought about doing a video PSA, and I think you should all just feel lucky that all I’m going to do is TALK about the process. People do not know what this is, and it’s CRUCIAL part of the “cancer journey”, if there is one. I need to do everything I can to help people understand that women who have their breasts amputated due to cancer are not “getting a boob job”.

 

So, to start: I got cancer. That was step one, in my case, but it almost wasn’t. See, I have a gene mutation (BRCA1), and I knew it, so the process I’m about to describe is one I would have undergone, regardless of whether I developed cancer or not. In fact, one of the decisions that BRCA positive people need to confront is when and if to have what’s called a prophylactic bilateral mastectomy. If you need more information on that sort of experience, you can reference the New York Times Op-Eds by Angelina Jolie, who underwent both a prophylactic (preventative) bilateral mastectomy and a prophylactic hysterectomy (you can find them here and here). So, right around the time I got cancer, I was just starting to plan my preventative surgeries. But, then I got cancer, so they weren’t preventative anymore. They would also be significantly more complicated.

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Mid chemo, with prosthetics. 

So, then: I had a bilateral (that means both breasts) mastectomy, and in addition, I had this thing called a sentinel node biopsy during the same surgery, which looks for cancer in your lymph nodes. They found a tiny bit there. In that same surgery, I also had these things placed called tissue expanders. These are like empty ziploc bags with studs in them, and they are placed underneath your chest muscles to make room for implants. Theoretically, they are slowly filled with liquid, which expands your chest muscles so t

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Mid-infection, Mid-treatment. Mid-hell. 

hat permanent implants can be placed beneath them. However, my first expander (on my right side), got infected, which is very common. What is not common is that this infection coincided with my first chemo treatment, which meant that this infection ravaged my chest and all the tissue on it. I lost that expander. We are up to last July now.

 

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Post-chemo, pre-lat flap. 

And then: I finished chemo, and spent the school year with pretty significant pain in my shoulder and back, which I would later learn was due to the amount of fibrous scar tissue that had formed on my chest. So, I went to physical therapy a lot, got a cortisone shot, and tried to work out. Often, when I would work out, or for no apparent reason at all, I would be crippled with chest spasms. Once, I taught my class via Google Hangout from my bed. Also, as an aside, in December, I had a prophylactic hysterectomy, which brought on surgical menopause, but that’s kind of separate. Kind of.  We made it to May 2016 now.

 

And then: I decided to continue with reconstruction, which meant that I had to have another surgery. This one took part of my Latissimus Dorsi muscle, which is basically your back, detached it, swung it around under my armpit, and sewed it on to my chest. This needed to happen because my right chest area, where I’d had the infection, was so messed up that it would have been impossible to place an expander. Initially, the surgery was successful and uncomplicated. Then, for reasons unknown, I got another staph infection in the same side, and I spent eight days in the hospital. I recovered from that one, and continued through the expansion process. I got another staph infection, or the same one, no one is sure, but I was hospitalized again, though only for one night. That was a week and a half ago.

Today: I got my last expansion. This means that the expanders are full enough that they will support implants that are reasonably close to how I looked before all of this began.

On October 7th, I will have my last surgery. This is outpatient “exchange surgery”, where they will take out the tissue expanders and put in permanent implants, which are less likely to get infected. I might need a revision here or there, to make sure everything gets to and stays in the right spot, but overall, this seems like the end of the line. 

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Me, lately. Again. 


This bolded sentence above contains the entire process of your average cosmetic breast augmentation, or a “boob job” as people call it. I mean no disrespect for women who elect this surgery; I am sure they have their reasons, and it’s truly none of our business. However, my point here is that what I’ve been engaged in, consumed by, ruled by, for the last year and a half, is not a “boob job”. Nearly every previous sentence contains hours and hours of pain, uncertainty, and impossible decisions. The result of this process, new, fake breasts,  is not a silver lining to my illness, regardless of how many jokes I might tell to make everyone feel more comfortable. Also, I get the sense that people do not know the difference between the two processes, and I hope my story helps to illuminate the physical side of why they’re completely different.

In addition to the difference in physical process, I’ve often fielded inquiries from well-meaning folks about whether this surgery is elective, what my election of this surgery says about my relationship to my own female body, and whether or not they would make the same choice in my position. First and foremost, if you are speaking with someone who is considering this process, or undergoing this process, imagine that instead of reconstructing their breasts, they are reconstructing their legs. Or, if you are a man, imagine that your penis and testicles have been amputated, and the conversation is about reconstructing those body parts. I say this not to shock you, but to try to frame the conversation in a way that is more realistic, and that is often left unconsidered, or hidden. Breast cancer awareness has allowed us to talk more about breast cancer, and this beats the shameful silence that women used to have to keep about their disease, but now that we’re here, I think we can and must do better. Reconstruction is missing from public knowledge, despite the fact that it often extends the cancer-related medical interaction, sometimes for years.

So, starting from there, imagine then whether you think it’s appropriate to ask if the surgeries are necessary, if they are elective, if they are evidence of some sort of unhealthy view of one’s body, if they reinforce harmful stereotypes of women’s bodies as objects. I have been asked all of these questions several times, by people who know me well, and people who don’t. I feel like I need to gently correct this behavior, mostly because I don’t have any of the answers to those huge theoretical questions (and that’s weird for me!). All I know is, when I woke up from surgery in May, and I had two breasts again for the first time in a year, I felt better. That is all. I felt like finally it would be possible for me not to lead with my illness, to be a person first, and a sick person second. Taking stock, it’s certain that this process has made me more sick than I otherwise would have been, but it has also made me feel more complete and capable. If you cannot understand that, and you want to, I would encourage you to remain open to the dissonance you feel at those two concepts, which are seemingly opposed. That dissonance is where I live now. I’m not the only one here, unfortunately; as I’ve mentioned throughout, my family and loved ones live here too.

I’m looking forward to being “done” with surgeries! Holy moly, it’s been a tough road. But, (maybe) it’s almost over.

Thanks, as always, for reading.

Much love,

Emily

 

 

 

Cancer Post #?: Death.

Note: This got kind of long. And sad. I have a lot to say on this topic. Sorry!

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Sunrise from my last hospital room

Well, that is a provocative title, eh? DEATH: a topic much considered in the abstract sense, the concrete sense, our senses of humor, and our sense of our own humanity. I have spent an abnormal amount of my year, and really my life, thinking about death. I’m reminded of Woody Allen in Annie Hall, whose books are all about death, which, as he remarks, “is a very important subject”. Still, for as much conversation as there is around living with or without cancer, with or without genetic mutations, there is a place where our words seem to  fail us. We cannot describe what it’s like to be afraid of what will happen when we die, when our loved ones die. We do not have words for what it is like to live in proximity to our own demise or the demise of a loved one, and we certainly don’t understand what it’s like to live in close proximity to death for prolonged periods of time. We have created these expectations that the default state of existence is to be alive, to be free, to be capable and happy, when in fact those states of existence are the exception or the privilege, not the rule.

I know that many of my readers, if I still have any at this point, now that it’s clear what this post is about, may be concerned for my well-being. For Americans, anyway, it’s uncomfortable to consider one’s own proximity to death. I’m sure that people I love will be worried that I’m writing about this, and I want to be clear that you needn’t be more worried for me than you are for anyone, because (NEWSFLASH) we are all going to die. There ya go. I said it. Right there, on the page, in black and white. Also overall, most of the time, I feel reasonably happy, but my happiness or lack thereof, does not change the fact that it’s going to happen. The end, so to speak. This seems an obvious point, but I would like you to consider all of the energy that goes into avoiding death. We spend most of our lives doing it. All of the rushing around, the busyness, the things we have to do because we said we would, is this living, or is this “not dying”? Are those the same thing? Are they parts of each other? Do they happen simultaneously? I’m never sure, but I’ll tell you, nothing makes you consider those questions like getting diagnosed with a potentially fatal disease! That’ll perk you right up!

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Snails in Big Sand Lake. Some are dead. Some are not. 🙂

Further, in all of this rushing around, many of us have the luxury or the burden of figuring out where to put our fear of death. Where should it go? How can I make it fit into the same space where I keep the evidence that I am alive now, and thriving? How can my death exist in my life, preferably in a way that doesn’t scare the bejesus out of me?  It does not necessarily matter whether your proximity to death is “real” or imagined; if you are afraid, you are afraid, and you will have to work harder to function while you carry that fear. Public rhetoric encourages us to compartmentalize in this way; we learn that in America, bodies near death are the exception, not the rule. In America, we are white, smiling and blond, we are healthy, and we are completely normal. We look as if we will live forever, and it won’t even be too hard. Except that, as I mentioned, health and safety are the exception, and not the rule. Many of us have to think about death more than others, and the work that goes into functioning in the face of the threat of death, which feels imminent and real, goes unseen. Temporary bodies go unrecognized, because to see them would force others to have to work harder to compartmentalize their own fears.

I realize that up until this point I have been writing this in the abstract. I want to share how it matters, for my family and me, to live aware of our proximity to death, to consider it as an option, and ultimately as an outcome of our lives. Before I do, I want to say that to even be able to put words to this has taken me years. It will take more, I’m sure, for better words to come.

I will start with myself. I am afraid to die. My cancer is not likely to kill me, at this point, but it could come back. It could kill me. This year, I have had to live with that very real fact, and my fear of my own death has been reinforced by my own temporarily disabled body. My shoulders hurt for most of this year. The next thought was: does that mean there is cancer in my shoulder bone? What of this pain in my side? Should I have it checked out before or after my children’s birthday? When would be a good time to get bad news? IMG_0723

I get tired very easily this year, and often have to break commitments I make, which naturally cautions people (my family, my colleagues) when they decide to depend on me for something. My next thought is: is this what it’s like when people know you’re going to die? Do they write off your capability, first, as an intended act of kindness? When I’m incapacitated, am I also irrelevant?

In the past year, I have had to consider when, in my childrens’ lives, would be the least damaging time for me to die? What’s a good age? Is now better than later, when they will see it and remember it? We have had to work on keeping all of us well; I have had visions of each one of my family members laying next to me in the hospital, sick with me, dying with me. I have prayed that I would get through my own illness in time to care for them, should they need me. I have wondered, in a visceral way, what would happen to my children if they were orphaned.

Unfortunately, about two weeks ago, I was re-hospitalized following the surgery I had in May, which was so successful initially. I had another staph infection. Last year, when I had almost the exact same thing happen at the exact same time, in almost the exact same way, I became severely neutropenic, which means that I had no white blood cells left in my body to fight this staph infection. It was very serious, and although I wasn’t really aware of it at the time, was probably as close as I’ve ever gotten, consciously, to dying. So, to live through a similar situation has been traumatic, for my family and me. The good news is materially, I was not undergoing chemo this time, and so I had some white blood cells to fight the infection, and not only am I living, but I am also likely to keep the tissue IMG_0713expander in my chest. I highlight this example to explain that it is not just the actual possibility of death that is difficult to live with, but also the perception of the threat, that is painful.

As I’ve written previously, the hardest part of this is to watch my family live in this fear. It takes a lot of energy and pain to process because it is constant. There is no break. Every day since I went into the hospital this last time, my daughter, Vivian, who is three, tells me about a “owie” on her body (which may or may not actually exist), and asks me to take her to the hospital. Then, she says, “because I need surgery to make it better, but I don’t want the doctors to cut my body, I don’t want surgery”. Because my cancer is the result of a genetic mutation, and because the women in my family before me have died, I cannot say to my daughter “Don’t worry, that will never happen.” That would be a lie whose price I can’t afford.

My son, Henry, who is five, has decided to try to shoulder the entirety of his own fear for me, and his fear for himself. He can’t, obviously, because the secret to all of this is that we are afIMG_0435raid together, and somehow that makes it possible to bear. Lately, his feelings come out in uncharacteristic bursts of rage, or dangerous physical stunts, meant to challenge this death bogey man who is haunting his life. My work as a parent is literally to hold my children on my body, damaged as it is, and tell them that I cannot promise that death won’t come for me, or for them,(in fact, I can promise the exact opposite).  I hold them and tell them another truth: that I will be with them through that fear, that it matters, and to thank them for being with me through mine.


I write all of this today, July 7th, 2016, and in our country in the last 48 hours two black men have been killed by the police. I know this last sentence seems like a departure, and I recognize that I am white, and my thinking might be a faulty projection of my limited experience,  but I imagine the fear of leaving my children or losing them somehow, the constancy of that fear, the regularity of it and the stress it creates, has some things in common with what it is like to be a black person living in America right now. I don’t mean to say that the experiences of being black and the experience of having cancer are in any way uniform or separate, or that I can ever truly know anyone else’s experience, but as I mentioned earlier, I know how it feels for me to be afraid for my life and for the lives of my children in an unending way.

I also know what it means to watch others be afraid for your life. I know what it feels like to grieve the amount of thinking, talking, and processing you have to do with your children about death when it comes so close, especially when they are so young. In each of the murders that have occurred in the past 48 hours, there have been children present or irreparably affected. I cannot stop myself from connecting  a tiny common string between the experiences of those children to the experience of my own children, who have had to get closer to death during life than I want them to ever be. My presumptuous connections between these experiences have made me cry a lot today.

I grieve the injustice of the time and energy my fellow black human beings have to spend managing the fear of a completely preventable death which can be dealt without warning, or in most cases, without consequence for the dealer. I grieve how reasonable this fear is, given our current social reality. I also grieve for the police, whose inability to compartmentalize and manage that exact same fear leads them to murder, to make such a terrible, unthinkable mistake. I grieve for my LGBT friends, and my Muslim friends, my white friends, my Mexican family. I grieve for how afraid we are, all the time, and for how this constant fear robs us of our sense of freedom. I pray we can choose to at least be afraid together, to validate instead of dismiss this terror. I hope we collectively recognize the unequal fear burden placed on people of color, the disabled, the sick, the otherwise marginalized and their families, who have to work very, very hard to function while carrying this fear of death.

From my own limited experience, I can tell you, it is a constant struggle and it is hellacious. And while my co-survivors of cancer tell me that my fear will recede as I get further away from diagnosis and treatment, I know it will never completely go away, not for me, not for my children, not for my family. At least I can hope it will recede a bit from my daily physical and mental reality, though. This is the privilege afforded me.

Lastly, I want to say why I am writing this today. All day my social media has been filled with sadness and death, more so than other days. For my friends and family of color or my loved ones who have been otherwise marginalized, I wrote this, not to claim I understand, but to tell you I grieve with you and I fear with you. I see you. I hear you. I love you.

For my white family and friends, who perhaps have trouble understanding the reality they are not privy to, I want you to think about cancer, about the fear that brings. I want you to think about hospitals, think about scary tests, think about maimed bodies (think about mine, if that helps).  I don’t mean to torture you or pain you, and for the record, it pains me to even ask this. I want you to think about this so you can imagine that horror as a drop in the bucket compared to what some folks live with day after day, generation after generation, backwards and forwards, with no end in sight. If cancer is an easier point of comparison for you, then, by all means, use mine. And, I love you too.

Life Support in Cancer Country

Hi! I bet that many of you read that title and thought, “Holy shit, Emily’s on life support? Her recent short update was so positive! What the hell?”, and to you I say, CLICKBAIT! I’m not above using your care for my wellbeing to get you to read my writing. Not above it at all. I’m doing great, by the way. I just had this surgery called a latissimus flap reconstructive surgery, which has made it possible to reconstruct my right side, which had both the cancer and then the infection and failed expander. I seriously feel great! My doc cleared out a bunch of scar tissue, and so I have a lot less pain.

IMG_0370Now that I’ve got your attention, I need to write about something really, really important. It’s recently occurred to me, and by “occur” I mean wrung out through hours of therapy and personal reflection, that I am the leader of a group of people with cancer. When I got cancer, so did Matty, Henry, Vivian, my mom, and my dad, and on and on, to my other family and friends whose hearts break a little bit when they think about my illness. I cannot tell you how weird it is to be in this position. First of all, the awesome power of human connection overwhelms me; humans are so connected to one another that we get sick when the ones we love are sick. Second, I am indignant! I am the one who currently has drains hanging out of the side of her body, whose lat muscle has been transported onto her chest, who had a hysterectomy and menopause, who went through chemo and the inevitable pain and indignities, who had a bilateral mastectomy; this experience is all mine, and you can’t take it. Or, if you’re going to have part of the emotional pain, then come on in and take some of the physical experience from me, please. Please.

Further, how am I supposed to tell you all how to handle this, when I am struggling to handle it myself? Is this how President Obama feels? Like he just has to keep making decisions about the next right step when he has no fricking idea what that is? I am the president of the country of my cancer. There’s a cabinet (my main peeps), a military (my docs and nurses), and citizens (friends, families, acquaintances who have graciously followed my story). And I am the goddamn president. I did not run for this, but I was elected anyways. And now we all live here.

This is one of the side effects of cancer that folks don’t talk about, and perhaps that is because they don’t conceive of themselves this way, or perhaps that is because they are so busy fighting their disease and leading their cancer country that they just don’t have the time. Still, and this is the kicker, the one thing that blows my indignation at this forced responsibility away: my citizens have watched their country form around them, saw the injustice of this formation, and have stayed to support me anyways. This is not a country of one, even though, by all logic it should be. I am, shockingly, not alone. Even though the presence of other stakeholders in my illness is complicated, still, I do not have to do this alone.

IMG_0333Matty, my husband, is here. Not only that, but he married me knowing I was BRCA1 positive. He knew that this country was likely to form and he followed me anyway. And from then on, he has been here, getting my water, sleeping on the couch when I need the whole bed, wrangling the children, cleaning our house like a madman. The list of things that Matty does to help our family reminds me of lines of code in a computer; too many to mention, but when combined, they make everything run. Matty’s work is the basic building block of everything that happens for us. He quietly runs the show and asks for nearly nothing. He hasn’t given up on me, and he hasn’t given up on himself. In the time I’ve had cancer, he’s also been quietly changing careers, becoming a new version of himself. He is helping me to build the airplane as we fly it.  He just follows, and in so doing he teaches me to lead.

IMG_0595My children, Vivian and Henry, who have asked for none of this, deserved none of this, and whose citizenship in this cancer country has caused me the most pain. There are too many examples to share of how they have borne my illness. Before this last surgery, Vivian said, “Mommy, when you have surgery, the monsters come out.” When Henry snuggles with me to watch a movie, every move he makes, every wiggle or repositioning of his body, comes with a look or a question: “Did I hurt you? Are you ok if I lay like this?” Every day, when Viv comes home from school she asks hopefully, “Are you feeling all better, Mommy?” It is unbearable, except I bear it somehow. Even in this unbearable state of affairs, my children are my greatest advisors. They help me to remember to laugh at IMG_0281simple things every single day. To use my body, damaged as it is, for love and play. To cultivate patience and faith in goodness, as it abounds even in the face of persistent, terrible distress. They have stayed in this terrible country, true, they have had little choice. But, in addition to their physical presence, they have remained emotionally present. They have opened themselves up again and again to the pain and sorrow that goes along with living here, and in doing so, they have shown all of us how to get up in the morning and look for happiness and love. They have been with me, and so I have not been alone.

My parents. They have been so with me as I’ve tried to lead. In my cancer country metaphor, they are: the IRS, the senate appropriations committee, the chiefs of staff, the secretaries of the state, of homeland security, and also the white houIMG_0158se chefs, nannies, and custodial crew. My mother, in particular, has been the secretary of defense, as she has been instrumental in helping me to communicate with my doctors, and to help me get the most out of the medical establishment. My mom and dad, despite the fact that remaining in this cancer country means witnessing their daughter struggle with cancer, which is the experience I am least able to imagine, have stayed in this country. They have taken up leadership, and in addition to all of that, have remained my emotional sounding boards. They are people I can cry to when I need to cry. This level of commitment is both very ordinary, in th
at it’s daily and sort of just how things are around here, and it’s also unfathomable, in that, can you imagine having to do this for your child? For my mother, we can put this into even deeper context. Because of our BRCA1 status, THIS IS THE THIRD TIME SHE HAS DONE THIS. My mother has watched her mother, her sister, and now her daughter get and fight cancer. She has watched her mother and her sister die fighting this. The only response I can imagine if I were in her shoes is to decide to leave my life; to take off in some way, to run like hell, to say, well, that seems like a bad problem you’re having, and I wish you good lIMG_0555uck. But my mom doesn’t. She stays with me as much as she can. My parents advise me on how to lead this country we all hate. They are present and accounted for.

So, as I mentioned, all of this unwavering support and participation in my illness is enough to make a person just tell everyone to shove it. I mean, not only do I get cancer, become the president of a cancer country, but then I also have to find some way to graciously process and appreciate the depth of love that people have for me? This is A LOT of work. Poor me. I am being both cute and truthful here; there have been many times in the past year where I have taken off into the woods for a walk after displays of affection and self-sacrifice from my family thinking, geez, would everyone please just mind their own business? Would everyone stop loving me so goddamn much? It’s oppressive! But, I can only chalk that behavior up to the trials of leadership, which is a very complicated thing. The challenge is to understand that even though I did not choose this leadership position, and that the formation of this cancer country has hurt me and those I love, that we suffer individually and together, that even through all of that, we simply remain. We are not moving to Canada. We are not leaving, we are not breaking apart. We are not taking off for good or checking out. And so, we are not alone. I am never alone, and I am grateful.

Thanks for reading this long post. Please know that I am doing just great, and that I feel like I’m turning a corner into a new and more positive part of my cancer experience. Thank you for being citizens of my cancer country!

Love, Emily

 

 

Update!

Hello my friends,

I’m not  going to write a regular post here, because I can’t at the moment, but I just wanted to send a quick message to say I’m alright after surgery yesterday. This was a lat flap reconstructive surgery, and it has gone very well so far! Thank you for your support, and more later.

Love,

Emily

Post-Cancer Post #2: One year

IMG_0040

The last family pic before. 

So, I’m starting this post with three minutes left on my 33rd birthday. I know I need to write today, not for anyone who reads this, but for myself. I want to mark the end of the first year of my cancer somehow, but all I keep doing is shopping online. It’s a problem. After everything that has happened this year, I’m finally out of words about it. For so much of this time, words have been racing through my mind like lasers trained on targets I can’t see. But today, when I feel I should have some coherent, inspiring reflection about how cancer has made me into a better person, I’ve just got nothing! Well, not nothing, but half-ideas, cliches, boring stories in which I could try to shoehorn some meaningful moral. Barf. Who wants to read that? Luckily, words are not the only medium available. I’ve peppered this post with some pictures of the past year.

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Memorial Terrace the day before my mastectomy. 


Here are the several directions I’ve thought of going in this post.

1. Gratitude. I am made speechless by the kindness that has come at me from so many corners of my life. From the people who have supported me on a regular basis throughout my treatment and post-treatment recovery to the random folks I’ve never met who have welcomed me onto message boards to old, old friends and acquaintances who have reached out to me with words, or gifts, or reassurance, I will never be able thank people properly. I am at a karmic deficit from here on out, and I know it. I could detail this forever and ever, and I don’t know how interesting that is for anyone else to read. Plus, it’s really hard to write. So, thank you so much, and I’ll stop there. This would be a  very short post.

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Viv moves up in daycare classrooms last summer. I was in bed. 

2. Physical Health Update: I’ve thought about using this as some sort of physical health update, but there isn’t much to tell:

I finished treatment in August.

I’ve had several clear CT scans since then.

I have some persistent shoulder, back, and chest pain related to my mastectomy.

I had a hysterectomy in December to prevent ovarian cancer. It has sent me into menopause, which has made me tired, hot, and cranky. I am a gem right now.

Also, my skin is dry.

I’m having a reconstructive surgery on May 25th, and I’ll be laid up for awhile after that.

IMG_0018

Ol’ Baldy!

I’m meditating and working out now, and it mostly feels pretty good.

Yup.

3. Thoughtful Reflection: I want to have some reflections to share that are hopeful and true, but I don’t have that many, or at least I don’t have any that are novel or non-cliche. My reflections, after everything this year has brought, are pretty simple:

Human relationships matter most. (aka “Love people, not things.”)

IMG_0528

Mid-chemo snuggles. 

If a problem can be solved, it’s probably not that huge to begin with, so allocate emotion accordingly, if you can. Wait for the big, unsolvable problems before you let it all go, if you can. “If you can” is crucial here. (aka “Don’t sweat the small stuff”)

Your body dictates a whole lot of your life. More than you could ever know it does when it’s working reasonably well. (aka “Love your body”)

We’re all going to die, so you better get in there and make something good happen. (aka “Life is short”)

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My cousin, Katie, her daughter, Tara,  and me, mid-hot flash and steroid bloat.  

Identity changes, and your changing identity changes others’ identities.  (aka “We are all unique”)

That’s it for reflection. I feel like Forrest Gump.

4. Plans or Commitments: I thought I would make some commitments moving forward, but the only ones I can commit to are uninteresting:

I commit to trying to live as well as I can for as long as I’m allowed. I commit to doing everything in my power to help my loved ones, especially my kids, have a meaningful life.

I commit to trying to help the world be a more fair place.

I commit to trying to take everything, including myself, less seriously.

I don’t know, doesn’t this sound like a Hallmark card? I need a kitten poster.

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We look normal, right? 


That’s my whole list of ideas. I feel like I should know more, after all I’ve been through. I imagine people reading my blog about cancer and looking to this occasion, my birthday, one year post-diagnosis, and really expecting something good. So, all five of you readers, thanks for reading, and I’m sorry to let you down! Cancer hasn’t really taught me anything surprising. I’m not really better for having had it. It has just sucked, and given the choice, I would choose a different experience. So, maybe the message is, if you can avoid cancer, try to do that? Again, obvious. Sorry.

As I look back over this post, I can see that I have learned some things, but it’s almost as if I’ve learned very simple things in a very deep way. Also, it turns out that this whole “understanding existence” gig isn’t really on the calendar. Perhaps clarity will strike me on some random day, when I expect to be doing something else. As you can see, I’ve been busy.

 

 

Thanks for reading!

Emily

Post-Cancer Post #1: Swimming Lessons

IMG_0532I’ve begun to swim. I would love to say that this is some triumphant return to an activity I enjoyed before cancer, but alas, I haven’t swum regularly since I quit swimming lessons at age 12. That’s correct; my parents forced me to take swimming lessons through age 12, despite the fact that I couldn’t pass out of the “shark” level at the Y because I sucked at the butterfly. My parents said that it was important to stay in swim lessons so that I would be able to save my own life in the event of a ship wreck, but really, I don’t know that I would be butterflying my way to safety in the unlikely event of a boat crash, so at the time it felt like overkill.

As is the case with so many things, I’m glad now that my parents forced me to take lessons so long. For one, the humiliation of repeatedly failing to pass onto the next level prepared me for the many humiliations embedded in beginning to swim after your body has been treated for cancer. Really, since I thought of swimming as a possible exercise, the humiliations just haven’t stopped coming! First, I had to buy a swim suit. Now, everyone knows that buying a swim suit is usually a time to call upon one’s compassionate connection to the universe, to deny one’s shame by mentally situating oneself within the vast network of flawed, beautiful humans. Yeah, well imagine trying to do that WHEN YOU HAVE NO BOOBS. I literally had to whisper to myself, “You look alright…you look alright…”, because the normal mantra of “You are beautiful…you are beautiful…” just felt like a stretch, and I needed one I could accept with minimal objection. So, after four stores, I finally found a two piece suit that covered all of my bits, and if you don’t look too closely, you might not immediately look at me and think I’ve had my breasts removed. Some of you are like, hello, this is what online shopping was invented for, and don’t they make suits for folks with mastectomies, in fact, I know someone who had one, and she got… Well, yes, there are other solutions, but for a bunch of reasons that matter to me and probably no one else, I decided that going to a store and trying on suits was my best option. Perhaps it wasn’t, but that’s what I did.

The humiliation did not end with the shopping! It hadn’t occurred to me that in order to put the swimsuit on, I would have to take my clothes off. In a locker room. FULL OF 19-YEAR-OLD UNDERGRADS BECAUSE I LIVE ON A COLLEGE CAMPUS. I had a couple of choices:

a) I could put my swim suit on over my shirt and then pull my shirt off under the suit. (I did this the first time. It looked so, so cool, and not at all weird.)

b) I could go in a bathroom stall. (I did this the next time, and again, it was totally so cool! It really tipped the undergrads off about how older women are more confident! Who run this mother? Who run the world? Girls! Like me!)

c) I could change really quickly when I made sure no one was walking by. (I did this the third time. Once I got my suit on, I think I slammed my locker door a little louder in celebration, as if to let people know that I, feminist, am now going to swim in the swim suit I am now wearing.)

d) I could get buck naked, regardless of who’s around, and handle the fallout, even if that means actual terrified, pitying looks from 19-year-olds. (I do this now. Every time. Cancer has taught me to seek thrills and suck the marrow from life.)

In the pool, I thud into the lap lane for slow swimmers. I swim for between twenty and thirty minutes, half of it with a kick board. I am absolutely wiped afterwards, and I have to be near a ladder, because I cannot physically pull myself out of the water. In my head, I hear Gregory Peck from Moby Dick, “It’s a great white whale!” The humiliation continues. But, I also feel lighter in water than I ever do on land. My arms fly out of the water in an arc that carries me now back to me at twelve, so capable, wiry, barely-breasted, but so strong and unaware. I didn’t want to change in the locker room then, either. I think of how I could swim continuously for a thirty minute swimming lesson, and I am so grateful to know that once, my body could do that. It makes me believe that my body could do that again. My parents forcing me to take swimming lessons to be able to save myself in the event of a shipwreck was not so off base after all.

IMG_0548Now, my mom is generously financing swimming lessons for my own children. EVERYONE  MUST LEARN TO SWIM AROUND HERE! So, each week Matty and I take the kids and watch from behind glass as they make their way through the water. Vivian spent the first five weeks screaming and crying. Now she loves it, but from time to time, she looks at us and shrieks, just to let us know we’re not off the hook, that she hasn’t forgotten our transgressions. I don’t know where she gets her flair for drama. Henry, on the other hand, has to work very hard to listen to his teacher and not just jump in the water on his own. He looks at us from time to time and smiles, as if to say, “See what I can do?”

It’s helpful now to remember that these little folks came out of this damaged body of mine. They swam around my womb first, and learned to breathe through their nose while they nursed from the breasts I’ve lost. They are part of me, and I am part of them; we are shrieking in protest, and we are jumping in feet first, smiling. Look what we can do. IMG_0270

 

 

Cancer Post #5 : Resolution

I like the word “resolution”. I have been meditating on its various meanings as this year comes to a close. It can signify intention, as in “I resolve to do this thing here…”. It can also mean the end of a story, which you will recall from when you learned how to map plots in your seventh grade English class, and you are so welcome. In the end, the problems are resolved, and that is the end of the story. I would like to trouble this in this blog post here, because really the only places where stories actually end  are in our imagination.

I keep waiting for an end to my cancer story. I don’t have cancer, so this should be the end. By should, I mean that my expectation was/is that when I got rid of my cancer, the ridding itself would be a matching bookend to the diagnosis. I cannot stop myself from wishing this were true, but I see that good health is not something that is or isn’t, instead it is more accurately placed in the sloshy containers of “well, right now…” and “maybe, maybe not” and “it depends”. This tendency towards the linear story line, the plot mountain that begins with an exposition, continues with rising action, peaks with climatic events, and then falls down into resolution is so tempting. I know that when people hear I am cancer-free, they see this as the resolution of my difficult story. Problem solved. The end. And yet…

I don’t know that you so much solve big problems as you subsume them into yourself and keep on moving. Perhaps I didn’t beat cancer so much as imbibe it, drink it down and keep walking. If you think of the hardest problems in your life, dear reader, did they ever actually end? I don’t know. I don’t see a time when I won’t think of cancer every day. I don’t see a time where small, niggling health problems won’t make me wonder if I am going down the rabbit hole again. Maybe that time will exist, and I am certain that folks reading this will want to tell me that it will, but realistically we can’t be sure. This uncertainty is part of me now; the best I can hope for is that it might move to the passenger seat instead of insisting on driving everywhere.

Anyhow, I’ve been thinking a lot about how to be now, how to exist in the new reality I’ve entered. So much of this place is crowded with worry, pain and sadness. I’ve been thinking that instead of a list of resolutions, I would make a list of comforts, with the understanding that I could revisit this in the new year, and beyond. One cancer benefit is that I have become an expert at staving off pain in small bits, and stringing those small bits together into large portions of comfortable time, which might be the best any of us can hope for.

Comforts to Cherish in 2016 (in no particular order): 

1. Being held by my husband

2. Watching my children play

3. Sitting outside

4. Eating with my mom

5. Walking with my dad

6. Hearing “I know, right?” from my sister

7. Screen media in general (Note: I’ve considered writing a media guide for the ill. Still might happen!)

8. Musicals in particular

9. Drinking coffee

10. Reading scholarly research (Note: I’m aware that I’ve just veered off here…it’s ok)

11. Getting a new piece of clothing and putting on make up

12. Going on a date with my husband

13. Hearing my husband give the kids a bath, put them to bed, and start on the dishes. (Note: While this is somewhat cheeky, I want to point out that the reason this gave me comfort this year is because  there were many nights where I couldn’t do this myself, and I would lay there feeling guilty and worrying that my kids wouldn’t get what they needed, and that my home was going to be condemned. So, when Matty just does all the things, with a smile on his face, it is comforting beyond  belief.)

14. 24 hour access to medical advice, assistance, and care, including from my cousin Katie, who was good enough to become an OB-GYN

15. My therapist

16. My office at UW

17. Assigned readings and writing deadlines

18. The music of Yo Yo Ma

19. Chocolate

20. Beer

21. The path along Lake Mendota out to picnic point

22. My kids caring for me (Note: This started as something I felt terrible about, and now I cherish it. Yesterday, Henry brought me a hot roll with honey and butter, and I watched him tip toe down the hall with it, trying not to drop it, and I felt like someone had reconnected the ol’ umbilical.)

23. Cooking

24. Snuggling up with my kids and watching a movie (Note: This is a combo of previous comforts)

25. Friends who ask me how I am and don’t mind when I tell the truth, and who do not tell me that everything happens for a reason, because they know that’s unhelpful. Friends who tell me of their lives!

26. People who open doors.

27. Presents!

28. Massage

29. Physical Therapy

30. Hats

31. PJs from Soma

32. Decluttered surfaces, clean floors

33. Good antibacterial soap and triple antibiotic ointment

34. Nice bedding

35. My kids daycare in Eagle Heights.

36. Eagle Heights in general.

37. Facebook

38. Reading essays
I know there are more, and I hope to really notice them and seek them out in times of worry and pain. I wish you comfort in the upcoming year and beyond. In spite of everything, we are so goddamn lucky.
PS- sorry for the lack of pics in this post. I am on my ipad. However, here is a recent video of me and Viv.

Cancer Post #4: The Hulk

518374_82e9_1024x2000Admittedly, I don’t know a ton about comic books. It’s been a professional liability for years: as a literacy teacher, comic books come up often. Lately, though, I’ve been thinking about The Hulk, or Bruce Banner, depending upon your perspective. I’m not certain why, but this character has been a consistent presence throughout my illness. While I waited for surgery, I suddenly became attracted to the Marvel movies, which was…new for me? To say the least. You are reading the words of a woman who re-watches movie musicals like Funny Girl and dramas like Fried Green Tomatoes periodically, just to make sure the films remain fresh in her mind. So, yeah, THE HULK!

I’m curious about why my interest has coincided with my cancer experience. Like, what is it about this character that parallels my experience? Which parts of my identity are now mirrored or relevant to the The Hulk? As a reader, you might be asking yourself these same questions with regards to the post you’re reading right now. You might wonder why you have to learn about The Hulk in order to learn about me.  I don’t really know the answer to that question, but I think that one of the reasons art persists is that humans turn to it in times of struggle, times of pain, and times of redefinition. If we learn about The Hulk, we might learn about ourselves. Literature is weird that way.

The first thing that I think draws me to The Hulk is that he has been transformed utterly by an unpredictable interaction with gamma radiation. First of all, as an aside to our purposes here, I HAVE TOTALLY HAD A TEST CALLED ‘GAMMA IMAGING’. So, if The Hulk and I met at a cocktail party, I would probably open with that. The entire idea, though, of having your previous identity split by an interaction with some sort of chemical, or in my case chemicals and surgery, is one I feel I know well.

Further, the outcome of that interaction is that Bruce Banner, formerly successful academic (I mean, come on!), is now beholden to his alter-ego, The Hulk, who can appear and shatter Banner’s credibility as a rational person at any time. For me, this is the key detail that joins my story with The Hulk. The next question, then, is what exactly is my alter-ego? Who is the Hulk to my Bruce Banner? What would my Hulk look like? Who would she be?

One way I imagine my Hulk would be similar to the character as it exists :angry, destructive, uncontrolled, yet loyal, and sad. I often feel like I am keeping a lid upon the darkness wrought within me. As if my anger could crush cities and lay waste and ruin to everything and everyone in my path, especially those I love. As it is, my anger and sadness bubbles up in unpredictable ways: as impatience with my beautiful children and husband, as a wave of sadness while I’m waiting for the bus, as a scream of anguish when I listen to an interview on NPR. There is no warning, and suddenly I am someone else.  Suddenly, I am not the engaged and present mom, but instead the mom skyping her children from far away. Suddenly, I am not the confident student, but a child. Suddenly, I am not a normal participant in society; suddenly, I am insane. You know, like the Hulk.

Another way I envision my alter ego is as cancer itself. It remains very possible, though thankfully, improbable (and according to a recent CT scan, not happening right now)  that there is cancer growing somewhere inside my body. It has already altered the way my body functions and looks, and I sometimes think of the possibility of recurrence as one that lays dormant inside my body, waiting, just as this cancer was essentially with me for my whole life, waiting. Was it? Is it? I don’t know, and neither, as far as I know, does Bruce Banner. Was he always also The Hulk, and the gamma radiation just allowed an expression of his true nature? Have I always been cancer, and have the events of my last six months been just the emergence of what has always been? Well intentioned folks will remind me that I am not my cancer, to try to disassociate myself from the medical condition as part of my identity, but I must disagree. I think The Hulk and Bruce Banner are one; they are the yin and the yang, the dark and the light at once. I think that death and illness are part of our humanity, our death is an embedded part of our life, as painful as that thought is. Mercifully, humans are particularly good at compartmentalizing thoughts of our own mortality; as I’ve said a lot in the past few months, there is a good reason that we don’t go around constantly convinced we’re going to die. It’s really hard to be living and dying at the same time, especially if you’re keenly aware of that duality. And yet, isn’t that exactly what we’re all doing, at all times except for the moment you’re born and the moment you die? I just find this fascinating and terrible, and I’m at once glad to think of it and wishing desperately for the days when I hadn’t ever thought of it.

To end on a positive note, one commonality that I’d like to explore more is that both the Hulk and my cancer alter ego, whatever it is, are powerful and capable of extra human feats. As I’ve said previously, I can now witness my own mortality in a way that is helpful. The Hulk can pick up cars. I can see suffering and I have a well of empathy for it. The Hulk can leap really high. Like Bruce Banner, I’m not yet sure about the extent of my capabilities. I have the rest of my life to find out.

Cancer Post #3: How to Win Friends and Influence People

Credit: Matthew Schindler

Credit: Matthew Schindler

By the grace of the universe, I’m back at school now. I know. Everyone thinks this is crazy, including me. In fact, my calendar has been full of activity since I COMPLETED MY CHEMOTHERAPY three weeks ago. And there have been many times where I’ve had to coach myself through the expectations that “normal” life levels against me: one more stair…stay upright…the pain pills will kick in soon…almost time to rest. I can’t describe the radical juxtaposition between being a cancer patient and being a graduate student. In all, the two identities aren’t necessarily at odds with each other; it’s just that the requirements are totally different for each. Most notably, I often find myself introducing my new identity as a cancer survivor to folks in my professional and academic world, and I’m proud to say I’ve learned a few new things about the social part of having cancer.

Here are my preliminary findings:

  1. When people ask “How are you?”, they are mostly unprepared for the reality of an honest response. So, try to soften it for them. Do not tell them that you have to sleep at least twelve hours a day, or else you feel terrible. Do not tell them how you feel in that exact moment, unless you happen to feel unusually good. Say you are fine, great, feeling much better, or you are tired, or you are busy, because these are the acceptable responses that everyone expects, and in some way, can relate to. Do not tell them you have neuropathy, which makes it feel like your body is itching from the inside out. Do not tell them that sometimes your breasts hurt, even though they are no longer on your body. Especially don’t tell them that if they felt like you feel, they would have stayed home today, but you didn’t, because you never want to spend a lot of time in bed ever again. Socially, reinforce everyone’s relief that your bout with cancer has ended, even though in reality you know it hasn’t. The real story is too complicated, and too scary. The reality you are living makes well-intentioned acquaintances shudder, so probably keep that to yourself. Smile a lot.
  2. Try to plan your necessary rests and breaks around the time when you will actually need to engage with others. For instance, if you have a meeting, make sure you spend time inside, resting, preferably with air conditioning, because your colleagues might want to meet outside, and you need to prepare for sitting in the heat. Do not try to teach after walking up five flights of stairs carrying your bag. If this happens, go to the bathroom and sit fully clothed on the toilet until you catch your breath. Fix your lipstick so you don’t look dead. Get a rolling bag.
  3. Become an expert on slipping the fact of your cancer identity into professional conversation, but come by this expertise honestly. For instance, when you teach your first class, tell them when you introduce yourself. Feel the air in the classroom change. Take note for the next section, and withhold the information until a later date. In the classes you take as a student, during first day icebreakers where you have to go around the room and say something “fabulous” or “interesting” about yourself, resist the pulsing urge to say, “Yeah, ok, probably the most interesting thing about me is that less than three weeks ago I had my body pumped full of poison to KILL THE CANCER. Also, I have no breasts.” Do not say that, even though that would certainly be memorable . Tell folks anything but that and then nod, smile, and laugh appropriately as people share their odd talents, travel histories and all of the amazing things they did over the summer. If you must tell people of your cancer, do it with a smile on your face. Have a joke prepared to make them feel more comfortable. Do not breathe between the problem and the solution: “Iamundergoingtreatmentforbreastcancerdon’tworryI’mok.”
  4. Don’t be sad that no one you know recognizes you. It’s not their fault. You don’t recognize you either. Speak, and let them remember you.
  5. Get used to saying no. No, I can’t come to the social hour. No, I can’t go to the orientation, or the networking event, or the guest lecture. No, I can’t be part of this or that project, or that writing group. No, I can’t walk all the way across campus because I’ve already done one big walk today, and if I do another, I won’t be able to walk at all tomorrow. No. No. No. Thank you for asking. Do not think about how many times you can say no before people stop asking you to do things. In addition, get used to reneging on things you committed to because you thought you would be able to do them. Hope people understand that you are not irresponsible, but instead that you are searching for the capacity you once had, searching for the woman who could do a lot and finding instead a woman who needs her bed.

    Credit: Matthew Schindler

    Credit: Matthew Schindler  

  6. Get used to hating your impossible expectations of others. You expect them to know when you are tired, but are offended if they ask.You expect them to care about and validate the hellish experience of your cancer, and yet you also expect them to appreciate the fullness of your identity beyond it. At once. In casual conversation. Get used to knowing that you are being unfair to people, and that you are making them uncomfortable by being there, and that no one can help any of this.
  7. Continue to be overwhelmed with admiration for the people who look you in the eye and listen when your sleek, grateful “cancer survivor” veneer is cracked. Cling to them like rafts on a hurricane sea when they offer you a fan during a hot flash. Every time someone doesn’t expect you to comfort them about your cancer, be speechless with gratitude. Revel in the grace of people who laugh when you make a joke, who know you are trying to take a break from your constant vulnerability, and they kindly let you. Reserve a special space in your heaven for the folks who ask “How are you?” and don’t mind your honest answer, even if it includes diarrhea. Resist the urge to talk about diarrhea at all times.
  8. Above all, recognize that you are blessed by the concern and care of those around you, regardless of how that concern and care might make you actually feel. Recognize how lucky you are to exist, even if you feel like a weirdo most of the time. Feeling like a weirdo is a privilege. Laugh more often about the surreality of the experience, and be grateful for the new perspective you’ve gained. Many will go their whole life without it, or they will get it when it’s too late for it to be useful, whereas you get to use your new relationship with mortality to connect to other humans. Without question, this is a gift.

    Credit: Matthew Schindler

    Credit: Matthew Schindler

I hope you find this advice useful, and I hope you never need it. I envision my re-entry into the world of the surely-not-dying as if I were clamoring onto dry land after being shipwrecked at sea, and I stumble into the closest possible building, which happens to be a classroom. When I walk in, there’s a momentary fuss over my haggard state, after which the teacher says, “Ok, then. Take your seat. Your neighbor will catch you up on what you’ve missed.” And, not knowing what else I do, I borrow a piece of paper and start taking notes. It beats the hell out of swimming for your life.

As always, thanks for reading!

Love, Emily