Kate
Waiting for Diagnosis
November 22, 2017
(This was originally published as a column for the Baltimore Beat, a local independent newspaper.) I’ve been on some pretty kick ass field trips lately. I went to Chicago on a work trip, brought the ladyfriend with me, visited some amazing museums, and fell in love with another public transportation system. I’ve been on some sweet bicycle rides in this cool fall weather and remembered that yes, this is the very best season to see Baltimore by bike. I’ve eaten some amazing cream of crab soup, taken some excellent walks, and have had all the feelings of field tripping in my everyday life.
But mostly I’ve been waiting, and it is the most excruciating field-trip-to-nowhere I’ve ever had. Every other field trip feels like it’s happening to some shell of me. She’s there, I see her, but me, I’m completely disconnected, floating above it all, too busy waiting to pay attention to anything. I see all these other people—my colleagues at work, my students, the guy who brings me happy hour mixed drinks at CVP, other cyclists in the cycletrack—and they all seem to be going about their business like nothing’s happening. HOW CAN YOU DO ALL THAT WHEN YOU SHOULD BE WAITING, I think in my head. Their worlds are moving, and mine is just standing still.
I’m waiting for biopsy results to confirm a likely case of breast cancer. By the time this column goes to press I’ll probably be done with this round of waiting and on to the next one. From what I’ve gleaned from people who’ve been on this road before, there’s always plenty of waiting after this particular round of it. It feels incredibly urgent to me to find out what this 7 mm tumor is like. Is it cancer? Something else? If it’s cancer, does estrogen make it grow faster? How about growth hormones? I get mammograms every year, because that’s what goody two shoes rule followers with health insurance and moms and aunties with breast cancer do. What happened in the last year to make this grow? And are cancer cells shooting around my body right now as I type this, as I wait for the phone call that will likely require another phone call and another appointment and another blood test and a whole bunch of terrible decisions before I start waiting all over again? I know I’m going to die—we all do—but am I going to die of this anytime soon? For the people in the pathology department it’s just another slide of cells, and it’s not really a rush.
From reading through breast cancer discussion board after breast cancer discussion board I can tell that the part where this feels so terrible is pretty normal. Some women even say the period between biopsy and diagnosis is worse than chemotherapy because when you’re doing chemotherapy you have at least the illusion that you’re doing something that might save your life. When you’re waiting your mind is just zipping around to all the worst case scenarios and there isn’t even an illusion of control to cling to.
So what am I doing? I’m scrolling through all the internet information about breast cancer I can find, I think partly because my cerebral self thinks knowing things might lend me some control over this situation, even though I know better. I’m learning about how tumors work. I’m learning about the history of screening mammograms. I’m learning that some feel screening mammograms do more harm than good. 80% of biopsies following suspicious mammograms are benign. Not mine—in my case, more than 95% that look like mine are malignant. That said, the technology for spotting tumors has gotten so good that tumors are found and treated that, if left alone, might never have caused a problem. Some argue that breast cancer is being radically overtreated as people with small tumors in their breasts undergo mastectomies, radiation therapy, and chemotherapy that is physically devastating. We are well but are made so, so sick before we are allowed to get well again.
Many women attribute their survival to early detection, and for the few whose cancerous tumors really would have been deadly and are caught early, this is certainly true. The trouble is there’s not really a good way to know in advance if you’ve got the bad stuff or the totally manageable stuff.
And so here I sit, having an afternoon drink and some french fries, writing a few words to distract me from the part where I have no control over when the pathology results come back, what is or is not growing in my left breast, 5.5 centimeters behind my nipple, and what is coming next. I am already caught totally by surprise by my great desire to keep this breast that has always been too big to make bras affordable or keep back pain at bay. This is a part of my body, and I don’t want to lose it. I know if I have to I will, because I’m much more interested in keeping the rest of me around than my left tit, but good goddess, I want to keep both.
Are there any redemptive moments here? Well, I have health insurance, and that makes me one of the lucky ones. That diagnostic mammogram and ultrasound? Almost $1,000. If I had to pay that out of pocket, well, let’s just say there’d be no Christmas this year, and I’m just barely getting started. I told my boss at work what I’m waiting to hear, and she was quick to tell me I could take all the time I need, they’d cover my workload, taking care of myself is the first priority. I am surrounded by a community that cares about me, a family that loves me beyond measure, a partner whose kindness and care exceed even her good looks—and that’s saying something. No matter what the results are and what the next steps look like, I’m one of the lucky ones. We need universal health care and a real safety net so that everyone can have the security to know that when the thing that throws everything into a waiting race comes—and it will come for all of us, if we’re lucky—we’ll all have the time, space, and resources to sit and wait.
Waiting #1
November 29, 2017
I waited for a biopsy, waited for biopsy results, waited to meet with the surgeon, and now I'm waiting to schedule surgery, waiting to take a gene test that will decide if I can stick with a lumpectomy or if I'll be saying goodbye to my breasts in January, and waiting for an MRI to see if there's more cancer everywhere. It's so much waiting. It's excruciating. Last night I described it as a feeling: my soul is ragged. My body feels fine, but it also feels like it's killing me, and I can't really concentrate for more than a few minutes. I can't believe how many of us have to go through this.
Yesterday I got a call from a machine that asked me to hold and then connected me to a human who asked me how they could help me. "You called me," I said. Oh, right, sorry. Yes. We have a referral in our system for you to do a gene test, but we can't schedule that until your insurance company approves it. Ok, thanks for calling. We need universal health care, not universal health insurance.
The surgery scheduler said she'd call me by 5pm. She didn't. The nurse navigator said the surgery scheduler had been in touch with me. She hadn't. I was enraged and weepy. I am anxious by nature, quick to anger, and this pushed me over some kind of edge. I know there will be so many edges. I have to find a way to deal with these feelings and these waits, but right now I'm in the mood to just cry and be angry. I'm going to sit with this as needed.
I looked at a calendar this morning. It feels like it has been forever already, but it hasn't. Time is a strange business. And here I am, another day of waiting. I'm grateful for the power of words to distract me.
Waiting #2
November 29, 2017
So much waiting, so many tears, and then a whole bunch of appointments made today. I feel like a thousand pounds have been lifted from my shoulders, my stress level from a 9 to a 2. It feels like we're doing something, and that feels really, really good.
Here's the schedule: MRI tomorrow at 10:00am, pre-op appointment Monday at 8:30am, surgery next Thursday at 7:00am. I am open to the possibility that all of this might change. If the MRI shows more cancer I might need to make a different decision--right now I'm scheduled for a lumpectomy, but if there's more going on here, I might need to schedule a mastectomy. Fingers crossed that things keep moving smoothly, but I'm reminding myself that I'm not in control here. What a rollercoaster.
MRI #1
November 30, 2017
I had my breast MRI this morning out at the Hopkins Greenspring campus. I got there early, like I do, flirted with the registration staff, like I do, and then followed all directions with good cheer. I got to wear special booties and chose the big gown and heated blanket. I got a little woozy when they put the IV port in because I'm easily woozed, but the tech let me stroke her fleece jacket to calm myself down. "I'm just going to pet you here if that's ok." She said it was, and also got some smelling salts and an ice pack to help calm me down. Thank you. She told me about her career plans and disappointments to distract me, and I was so grateful, and gushed a little. People have been so *nice* to me at these appointments.
And then it was all clicks and clacks, pings, buzzes, and trying not to puke through the headrest because I ate breakfast too close to having to lie down on my stomach for 30 minutes. I called on my practice from sensory deprivation tanks to stay still, count breaths, and not panic. And then it was over and the staff gave ME a thank you card. Um, y'all got that thanks backwards.
I headed home the long way so I could listen to the radio and cry if I wanted to--I didn't. I pulled into a Starbucks drive thru for a peppermint mocha to take the metal taste from contrast out of my mouth. The radiologist called as I was pulling back onto York Road: "I looked at your films and there's nothing there other than what we expected to see. The size is still 7mm like it was on the mammogram and ultrasound, and you don't need any more biopsies before surgery." How is it possible to get this news so quickly? What a gift, what a gift, and I felt celebratory, the happiest I've felt about having cancer after yesterday's call to schedule surgery.
The radiologist never called it cancer--she called it "what we expected," "what we've seen," and "the material," but never cancer. It's still cancer, but I'm feeling good that it won't be in there for long. And now I get a weekend without tests--next up, preop physical on Monday.
Pre-Op Appointment #1
December 4, 2017
I had my pre op appointment at Hopkins today. I rode my bike over--bike lanes almost the whole way! It was all so efficient--lots of questions about my medical history, reminders not to eat or drink after midnight (so I don't puke it up on the surgical table), and then some blood tests for something that I didn't understand. Then it was back to the breast center to pick up my genetic testing kit and to another phlebotomist for another round of blood. That one hurt. And then I was all done and back on my bike to head to work.
I still have lots of questions: how do I stay ahead of the pain, what should I wear, when should Nicole come pick me up, when's my postop check up, etc. I started asking those questions and was told those are for the surgeon. Preop is for them, not me, I understood. I'll send a quick email to my nurse navigator this afternoon. I'm getting kind of excited for Thursday!
Surgery #1
December 7, 2017
I'm out, exhausted, and everything went as expected. I'll take it. Xo
Surgery Recovery
December 10, 2017
I got home from surgery on Thursday evening, which means I'm over 72 hours out. The pain is managed by some ibuprofen, I'm sleeping great, and I've showered. I've pooped--a big post-surgery milestone, I hear. Today I went for a walk outside for a few miles, and that felt amazing. There's still pain where the sentinel node biopsy happened, and I feel slow, but I'm feeling a lot better than two days ago.
So, what's next? I'm waiting on genetic test results that might suggest a different course of action--maybe even a prophylactic mastectomy. I really don't want that, so I'm crossing my fingers and toes that I don't have to make that decision. My post-op appointment is December 18, likely when I'll learn the pathology of my tumor and the node biopsy. I'm hoping for clean margins and negative nodes. Clean margins just means there aren't cancer cells too close to the edges of the healthy tissue they removed; if they aren't clean, I'll need more tissue removed. Cancer in the nodes may or may not change the treatment options, cancer in the lymph system will most definitely make me more nervous.
My first medical oncology appointment is December 29. I'll meet the doctor who will manage my care from here on out, and he'll be in charge of chemo (though this is unlikely, as far as I've been told) and hormone therapy (likely Tamoxifen for 5-10 YEARS). I'll meet with my radiology oncologist on January 2 to plan radiation therapy (likely 5 days a week for 5-7 weeks). By then these surgical wounds will hopefully be fully healed and I'll be strong for the next phase of all this.
People, including those I don't know very well, have asked me in roundabout ways what surgery I've had and what my prognosis is. Behind the question is, I think, the larger one: Do you have the kind of cancer where you're going to die, or not? That's my question, too, but being asked it feels a little weird, I think because it reminds me that I have cancer, and cancer kills people, and am I going to die? I will, of course, but I really hope I don't die from this cancer anytime soon. I don't think I will, but I'm still scared, because it's scary. I'll slowly figure out how to live with this new reality, I suspect.
For now I'm grateful for the many surprise gifts and treats from friends, for the endless Lyft and GrubHub gift cards that will make my life easier for the foreseeable difficult future, and for my ladyfriend, who is pretty much just taking care of everything. I'm lucky in a thousand ways. Thank you, universe.
Post Op #1
December 17, 2017
Tomorrow afternoon is my post op appointment. I'm getting anxious. And realizing I'm going to have to learn techniques for dealing with this kind of anxiety. I have plenty of time to do that, and I have some in my pocket, but I've just been too oh-my-god-I-have-cancer to activate. I'll get to it when I get to it.
Tomorrow I'll learn if the lumpectomy had clear margins and if they found cancer cells in my lymph nodes. And I'll talk with the doc about my genetic testing results. As I expected I'm negative for the BRCA genes, but I've got a mutation in some other gene that from what I can tell nobody knows a whole lot about but everybody thinks likely increases the risk of breast cancer. Which I already have. I know how I want that conversation to go (put me in a high risk assessment group and throw in a colonoscopy while yer at it), but I am also nervous that it'll go another way (hey, let's be on the safe side and just cut everything off now).
So, I'm nervous and anxious, and right at this moment, as I'm writing this down, I really, really wish I didn't have breast cancer. Meh. I'll let y'all know the updates when I know them. Thank you for your support. Whatever the news, I can deal with it. I'm relieved to know that about myself.
Post Op #2
December 18, 2017
I had my post op appointment this afternoon. To say I was anxious is a vast understatement. I'm all nerves as it is, so when we're talking about learning if you've got cancer cells in your lymph nodes or not, well, it's big time nerves.
The appointment was quick, and my full pathology report actually wasn't available. But my doc did know this: the margins are clear, and there were no cancer cells in the sentinel lymph node, so off I go to radiation and a decade of hormone therapy. I'll take it!
He asked about the genetic test results. I told him, he asked for numbers, I gave them to him, and he said, let's MRI and watch, no more surgery. That's what I thought, and it felt good to have the doctor just straight up agree with me. I'm still going to visit with a genetic counselor, but for now I'm happy to be under good care and to trust my doctors.
Next appointment: medical oncology, December 29th. I can do this.
More Waiting
December 28, 2017
I've been on vacation since I last wrote, and it has been wonderful. The pest few days in St. Louis with the ladyfriend's family have been intensely lazy, and it was just what I needed. But now it's time to head home and meet my new oncologist in the morning. Anxiety is up, though I've got nothing in particular to be anxious about. I think it might just be exiting this vacation from thinking about cancer all the time and heading back to the Land of Many Appointments. I don't expect much news to come out of tomorrow's appointment, but I'll keep everyone updated. First radiation appointment is next week, and then every single day, here we go. I'm so fortunate to have so much support and such good health insurance. Thank you, universe.
Surprise! Chemotherapy!
December 29, 2017
I met my new medical oncologist for the first time today, and I really liked him. He was straightforward, kind, and I implicitly trusted him. Very good vibes--even when he said that contrary to everything I've been told thus far, I need to do chemotherapy before I start radiation therapy. This was totally unexpected, so it was pretty upsetting. He explained his reasoning well, though, so I'm on board with it...even if I don't like it. For a number of reasons I'm looking at a high risk of recurrence, so let's throw what we can at it, I suppose. I'll start my first cycle in the next two weeks, and then we'll say a temporary goodbye to my energy, hair, tastebuds, and whatever else has to go so I can increase the chance to keep right on living cancer free.
We also talked about my CHEK2 mutation, and he's going to discuss it with the larger Hopkins tumor board. I've made it very clear that a prophylactic mastectomy would be my very last choice. Everybody's different, and for me, treatment and high risk screenings are preferable. He seemed on board with this plan, and I'm grateful for that.
I still wish I didn't have cancer, for those following along at home, but I can do all this. Thanks for all the support, friends!
Chemo #1
January 6, 2018
Chemo round #1 is underway, thank goodness. Anticipation is the worst, and I'm glad I only had to wait a week to start. That said, the week felt like a year, and I went through a full range of human emotion leading up to it--fear, terror, sadness, excitement (yes, excitement--what'll these new body experiences feel like???), and, oh yeah, fear. My ladyfriend and my sister both asked me what I was afraid of. I couldn't say. There's something about the word "chemotherapy" that's just scary.
But mostly I'm scared of being out of control of my body. I know that's a fantasy anyway, but it's one I comfortably inhabited most of the time until this diagnosis. That's a pretty good run of luck, when you think about it.
I digress. The ladyfriend drove us to the hospital. It was bitterly cold, and I think she got frostbite from the six minute walk from the garage to the front door. I checked in at the wrong place, was delayed to the phlebotomist, late to chemo class, which I didn't attend anyway because the two other patients and caregivers of the morning needed the same interpreter, and it was easier to give us a separate class. Which we didn't get. I wonder if insurance will be charged.
I was called back into the chemo ward just after my 10am appointment time. We picked a window bed, a nurse gave us a quick rundown of the process, and then a woman dug around on two different veins, unable to get a good line. "I'm going to faint," I said. "You're ok." "No, I'm not." I leaned back, she stepped off, and we got another nurse. "I'm a vein whisperer," she said. And she was.
A flush, 15 minutes of zofran for nausea, and hour of taxotere, a flush, an hour of cytoxan, another flush, and the Neulastra On Pro stuck on the back of my arm for delivery of a drug in 27 hours that will make my bone marrow produce more white blood cells to decrease the risk of infection. And then we went to Target and bought whatever we wanted, I had a gingerbread latte with whipped cream, and home to wait it out. I was scared to go to sleep last night, because what would it feel like to wake up in the morning, all my cells dying from poisons so toxic I have to flush twice with the lid down so my urine won't aerosolize and poison my ladyfriend?
I feel surprisingly fine, edgy with steroids and nerves, but fine. It won't last. But right now I feel fine. Anticipation of side effects--exhaustion, lethargy, mood, mouth sores, loss of taste (I can already taste the chemo, and it's not great)--is overwhelming. I need to practice staying present. I have a lot of chances to practice that, a sort of gift. Sort of.
Don't borrow trouble. I learned that when working through the side effects of quitting smoking. It's a good mantra. I'm trying to keep it in mind.
And I am continually blown away by the kindness of the people in my life, their care, their attention, their checking-in. I have a supportive workplace. I can't believe my luck at finding my ladyfriend on the internet; I wouldn't want to do this without her. She packed Skip Bo, snacks, got us lunch, tucked me in, tolerated my bananas anxiety, and is just the best. Gratitude, universe, for showing me in such literal ways what it means to support each other.
Chemo #1, Review #2
January 12, 2018
It has been a week since my first chemotherapy infusion, and dang, it's been a roller coaster. Here are a few of my side effects: terrible taste in my mouth, jumping out of my skin from steroids, back and bone pain that felt like I'd been beaten with a baseball bat, tears (the crying kind, not the cutting kind) on the edge of my skin, fatigue, indigestion, headache, diarrhea, and an itchy rash. Oh, and the inside of my mouth feels like a sunburn. It seems like there's something new every morning. And all of it has been surprisingly tolerable.
Other things that have happened this week include teaching a three hour class, grading, a dance class, two ten minute bike rides, a three mile walk, a four mile walk, lunch with friends, acupuncture, three fancy lattes, a day at the office, some grading, reading a bunch of chapters in a book about cancer, and a trip to the movies--on a school night. There were parts of the week that felt like any other week, and that was a huge relief. I guess I was afraid every moment would be seized by cellular death, but it turns out that the full range of human emotion is still my life's terrain, even if the shitty embodied part is taking up more space than usual.
The most important thing I learned this week is that even though I can't predict what things will feel like--and I'm under no illusion that it will always feel like it does now--I can get through it. I can tolerate difficult feelings. I knew that, but I know it a little better now, and that feels good.
Chemo #1, Review #2
January 19, 2018
Oh, this week was so much easier than last week! The side effects have largely stopped, and I had almost old levels of energy this week. I took a dance class three days this week, rode my bike to one of them, took a couple long walks, taught my class and felt like myself as a teacher, made dinners, and basically felt like me. I had moments of real joy, and I wasn't sure I'd get any of those during chemo. I think I thought I'd get the first infusion and then everything would be terrible until May. I'm so relieved that's not true. One day at a time, and this week was a string of great days. I'll take them.
The thing that IS starting to happen, though, is the hair loss. I've been waiting for this, pulling on my hair a bit every day to see if it was time. And then two days ago I got some strands, and yesterday my hands were filled with clumps. It's really going right now. It's super upsetting to my partner to see it happening. It's a visual reminder that I'm sick, that I've got cancer. I'm never for one single moment not intimately aware that I'm sick, that I've got cancer, so it's a little different for me. It's actually at this point just really interesting. That said, I'm not looking forward to finding out how the world looks at a cancer patient. But I'll learn a lot from it, so there's that. I'll buzz the hair off soon, I'm sure, but I think I've got a few more days before it's that time. Mostly it's just getting messy.
I don't have the next round of chemo until next Friday, so I'm going to enjoy this reprieve for as long as it lasts, and I'll be ready to kill off some more cells next week. Thank you all for your continued support.
Shaving My Head
January 20, 2018
Today was rough. My hair was really coming out in big clumps and bald spots were showing up and it just got too real. It was interesting until it was really happening, and then it just felt traumatic. So I borrowed clippers and shaved the rest off, and I felt instantly better--instantly. I'm not waiting for the hair to come out anymore, and I still look like me. Phew.
But OMG, the indignities of breast cancer are just bananas. On to the next one, on to the next.
Chemo #2
January 27, 2018
Friday was my second round of chemo, and oh how much easier it is when you know what to expect! I signed in at the right place, was in and out of phlebotomy on time, grabbed my sister from the train station, and then my sister and ladyfriend had time for lunch before heading in for the infusion.
I was bummed that I couldn't get a window seat--shallow, I know, but I wanted to lie down like a princess. And then the technician took my vitals--my pulse was elevated, so I said, "Yeah, I'm a little anxious." She looked at me and said in what felt like an incredibly incredulous tone, "Why?" I lost it. I'm fine, mostly, but the tears and the fear are just right below the skin at times like this, and the part where she didn't seem to understand why I might be a little anxious about chemotherapy, about toxins pouring into my body that I know will make me so fatigued, destroy my stomach and mouth lining, require meds that will make my bones literally ache and my joints fall out. My jaw will roil, my sleep will be messed up, I'll get a rash and signs of thrush, a new side effect every day for a week. Why am I anxious? Are you seriously asking me that?, I asked angrily through tears.
And then she stepped out and Roslyn, the vein whisperer, came over and calmed me down, got my IV in with no trouble, and calmed me down, calling me her little water baby and reminding me that it's ok to be scared. I apologized profusely to the technician who surely didn't mean to set me off (but I'm secretly still mad at her), and settled in for a few hours that went quickly as we played Skip Bo and ate snacks and took selfies. It's ok, it really is, this full range of human emotions.
Afterward we came home, my sister and I lounged about, and sweet Nicole went to the grocery store and made a delicious dinner that we gobbled down before zoning out to some TV. There were plenty of tears yesterday, water baby that I am, but oh my goodness it feels good to have two of four down and to be so much less afraid of this part of the cancer project.
The Flu
February 5, 2018
I want to write about field trips, about leaving the computer and actually going out into the world and doing actual things, an increasingly rare feat in newspapering these days. That’s a good plan until you come down with the flu while on chemo for breast cancer. Yeah, I wasn’t going anywhere. When there are headlines warning of healthy people dying three days after getting a slight fever, the immunocompromised cancer patient gets pretty fucking scared they are next.
I also wasn’t going outside because the fatigue that hit me was so very intense. “Fatigue” can’t capture the weight of how I’ve felt this chemo cycle. I barely remember the first few days with the flu, a hot blur of hours spent in and out of consciousness as the “Great British Baking Show” sang in the background. I can’t say enough about this show for times of trial. After my dad was killed by an errant driver, the family gathered in the silence that follows such an event—what is there to say or do when faced with such unexpected tragedy? The answer turned out to be sitting, looking side eye at the abyss I feared would swallow me if I looked at it straight on, and watching as sweet-natured people with day jobs turned out meringues, sponges, scones, and tarts. When a baker was eliminated, everyone shared hugs and regret. It’s perfect for when everything else is terrible.
Another round of bakers lulled me through some hard days in and out of fever and worry that my developing cough would lead to pneumonia and then sepsis and then become a headline: Unhealthy middle aged woman with a wife and two cats dies, unsurprisingly, after catching the flu despite all best precautions. There are no more seasons left, so let’s hope things look up over here for the next few years.
And then the Olympics started. These aren’t quite as feel-good, what with the casual racism of our U.S.-based announcers and the knowledge that for host cities, the Olympics often herald brutal displacement and transfer of wealth from the poor to the rich. I’m privileged enough to get to put that in the background and just enjoy myself—what a world, what a self. The Olympics also turn me into a rabid “USA USA USA” nationalist in spite of all I know about our brutal history and present of settler colonialism, slavery, heteropatriarchy, and capitalist superexploitation. I weep at the feel-good stories of athletes who have worked so hard and dreamed so long and here they are, living their Olympic dreams. If you can’t leave the house and you have access to cable television, nothing’s better than the Olympics.
I’ve gotten into every sport I’ve watched. Curling is so much strategy and artistry, and the time limits count down how long you’ve got to think about what you’re doing, but the doing can take just as long as the thinking. Brilliant. Luge—the fastest sport at the games, as they keep reminding us—is just death-defying, no margin for error. Biathlon asks people to ski uphill if you can believe that, and then remain a steady shot in high winds. What the fuck. Slopestyle and halfpipe are just bananas, downhill is completely out of control, and who volunteers to get into ski jumping? You start higher than the Statue of Liberty, and a few seconds later you at the bottom and 110 meters away (however far that is). No way.
I love the part of watching the Olympics where I get to share in that moment when you’ve worked so hard for something for so long, had to get over so many mental hurdles—the doubt, the fear, the despair—and you finally reach the goal. I’ll have that moment maybe two or three times in my life, but mostly life is getting up when the alarm goes off, packing a lunch, getting to work and getting back, making dinner when you’re too tired, and then going to bed to get up and do it again the next day. I love and miss the steadiness and reliability of the quotidian, but the thrill of getting that thing you’ve worked so hard for? It is such a rush. I like to feed off somebody else’s when I can, and I appreciate that it makes me cry.
In between watching the Olympics, I’ve been reading books by people dying of cancer. Let me be clear: Cancer isn’t killing me right now. I’m going to die, just like we all are, but likely not of breast cancer in the near future. My prognosis is excellent. That said, I think about dying a lot more than I used to, an abyss that threatens to swallow me whole if I look too close. It’s scary. Writers like Kate Bowler, Paul Kalanithi, and Nina Riggs offer a radical vulnerability about a time that most of us are too scared to even imagine ever coming for us, even as intellectually we know it’s coming for all of us.
Most recently I finished Kalanithi’s “When Breath Becomes Air,” a 2016 bestseller. I lay there in bed reading his words about what it’s like to live when you know you are dying but you aren’t sure when but are sure it’ll be sooner than later and you know too much to let yourself believe too much in hope. I cried. And I wished we talked more about death, that death were more a part of life. It’s the only thing other than getting born that we’re all guaranteed to share, and yet we push it away as long as we can, each of us figuring out our own paths when our dads are hit by trucks and we come down with a case of the cancer. I can feel myself shoving it in the background even as it has made its presence so materially known. And then I got out of bed, put on some clothes, and headed to the bar for a beer and some men’s double curling. I’ve got another round of chemo in two days, the world is on fire, I’m finally over the flu, I think, and hopefully they’ll open up the downhill course tonight so I can watch Mikaela Shiffrin cement her legacy at the ripe old age of 22. Life with cancer, as it goes.
Chemo #3
February 18, 2018
I went in on Friday for round 3, and it is feeling like routine. The phlebotomist was speedy, the chemo technician was my flu urgent care technician, and everything's familiar. It still sucks.
And then I met with my oncologist for only the second time. I was scared to meet with him, because I've learned that cancer is way less predictable than I even thought it would be. You're going to give me bad news and make me cry, aren't you? I said to him.
But there's no news. I'm in treatment. He gave me my Oncotype score--29, the high end of intermediate. It is scary to get numbers, especially ones that show your chances of recurrence and metastases are not as low as you'd like. He said it validates the choice to do chemo, suggested we look into ovarian suppression and aromatase inhibitors at the end of all this, but that's a later conversation, for after radiation.
Cancer changes everything. I still have so much to learn to figure out how to live with this reality, but for now I'm going to settle in with this latest round of side effects and finish up the Olympics.
Getting Over the Flu
February 28, 2018
I thought I'd feel plastered to the bed forever, but I think I'm finally really over the flu and just dealing with basic chemo fatigue now. I got a nice long walk in today, and it felt so good to be outside and moving and not aching with exhaustion. Yay! I had no good days at all after my second round of chemo, so these good days feel most especially like gifts. My last round of chemo is next Friday, so here's to more good days between now and then!
Chemo #4
March 14, 2018
My last round of chemo was Friday. I was excited--this time when I start feeling better, I'll get to keep feeling better. Others were excited too--I'm all done! Except the infusion is the start, not the end of chemo. The fatigue is really intense right now. I know I'll be on the mend soon, but right now it is almost overwhelming how tired I am. And my joints hurt, my digestion is a mess, and my mouth tastes terrible. I'm peeking at the next stage of treatment now, and wow, the indignities just keep on coming. One step at a time, I'll get there, and then I'll deal with whatever is there when I get there.
Taking a Bike Ride
March 19, 2017
I’ve spent the past three months in chemotherapy for breast cancer. It has been rough, not going to lie, made more so by a mid-treatment bout with the flu. Jesus. It’s a roller coaster of side effects, and I’m here, a week out from the last treatment, in a bit of a haze from what has just happened. I haven’t been on my bike except for a couple of really short rides, because I’ve been too exhausted and often unsure of my balance. I got on my bike today, though, because the only way to get back on the bike is to get back on the bike, and I want to get back on my bike.
I got my things for the day together and dug out my bike bag. I cleaned out some of the trash in there, including the CD with pictures of my cancerous tumor. Apparently last time I used this bag I was shuttling between doctors, but today I got to shuttle between home and errands, like the old days. My first stop was R.’s house. She’s got the flu–the worst part of cancer–so I brought her some leftovers and we had lunch together. I’ve learned from being sick that what sick people need is food and company, and it seemed to work for her, too. The ride was fine, though I was almost instantly out of breath, not from the pedaling, but from the nerves. Traffic, terrible asphalt, darting pedestrians–the usual. But it’s not usual for me, and it looks like it’s going to take a minute to get used to it again.
And then I rode over to the coffee shop to do some grading, and it felt like the old days, except I was tired and out of breath from a really short ride. I was nervous about the ride home–could I get up the hill? I went for a short hike with the ladyfriend yesterday, and I had to stop for breath twice on the short uphill at the end. But you know what? Then I caught my breath and kept going, and I made it to the top and it felt amazing. My body is amazing. It has done so many things, and this latest is pretty incredible. It has communicated so many new things as it has worked to kill the parts of it that have gone rogue. And today it rode a bicycle for a few miles, including that uphill to home. I stopped at red lights, and that was all I needed. I made a final stop at the grocery, got stuff for dinner tonight, barely fit it in my bag, and rode my heavy bike, weighted down by more than usual, all the way home. It was all so ordinary, in an extraordinary way. And now I’m tired and will sit down and let my cells figure out what to do now. Other than the cancerous ones, they’re pretty good at knowing what they need.
Scheduling Radiation
March 23, 2018
I'm now two weeks out from my last round of chemo, and I'm feeling good, but also still tired. From what I've read that's normal, and I'm trying to be patient with myself in spite of all my desires to just be back to my pre-cancer self, riding my bicycle and being in the world full time with my light on. But I'm really tired, so I guess I just have to be patient and listen to my body. Neither's a strong suit of mine, but I'm getting better at it.
I met with the radiation oncologist yesterday for a follow up appointment. She repeated everything she'd said in the first appointment back in January, and I appreciated it. I wasn't really in the mood to hear very much back then. Nicole got to hear it all too, and she remembered things I still couldn't hear--I'm so grateful for her. My mapping appointment is next Friday, and I'll start a week and half or two after that. I hope I get a time that lets me keep teaching, but there's no way to know until we get to the moment of scheduling. That's wild to me. I have a very flexible schedule, but a couple things that aren't flexible. But I guess they'll become so if they have to. It's another part of this process that makes sense but is also maddening--I'm a patient being shuttled through treatment protocols more than a human being with needs outside of just cancer treatment.
That said, the radiation team is my favorite so far. They are helpful, explain things fully, and Nurse Boggs is the best. I am glad they are on my side, and I'll take this little break from being made to feel more and more terrible. Onward we go!
Radiation Simulation
March 31, 2018
They told me to get there at 7:15am for my 7:45am appointment, so I got there at 7:00am and sat in the waiting room until 7:45am when they took me back to the room. 20 minutes later I was on my way, my body marked up with tiny tattoos and permanent marker and waterproof stickers. "Don't let these come off until your next appointment," she said. That's on April 12. These better be some AMAZING stickers (and I've heard they are). It was quick, easy, the technician and I made each other laugh, and I'm happy to be moving forward with the next phase of all this.
And then I had the whole day to myself. I spent it walking and bicycling all over town. I used the electric bikes that are part of the Baltimore Bike Share fleet, and oh, they were so much fun! Zip, zip, zip, up and over and through town. I got caught in a rainstorm, spent too much on fancy coffee and just enough on a not-fancy lunch and I got myself a new pair of sneakers because my dogs were barking. It was such a good day. I'm so happy to have good days. Lucky me.
I don't have another appointment until April 12. That's wild. Exciting news.
Waiting to Start Radiation
April 14, 2018
I’m six weeks out from chemotherapy, and I cannot even begin to express in words what a difference it makes to be six weeks out from and not six weeks into chemotherapy. I don’t know how to explain it. It’s like I’d been living in a perpetual present, unable to look outside of my immediate physical self or beyond the precise moment. I’m in a different present now, one that reaches beyond the boundaries of my body and connects to the world again, just a little bit. And I’m starting to make plans for the future, and they aren’t about cancer. I feel so much better. It’s astounding.
I was set to start radiation this past week. People ask me if I’ll get really sick again, and honestly I just don’t know. There are a ton of horror stories on the breast cancer support sites, but the stats on side effects suggest I could get by with some slight pinkening of my skin or maybe a week or two of itching. I could get really fatigued, or I might not notice it. I’m miraculously managing not to borrow trouble, and have just been enjoying feeling good. I’ve started a beginning jogging program, and decided to ride my bike to my first radiation session on Friday. I’ve been so nervous about having the energy to bike, but decided to just try riding my bike to see what would happen.
Friday’s ride took me south and east and south again, opposite rush hour traffic heading downtown. It was already a little bit warm out, and the feel of the wind on my bare legs brought back a rush of memories. It felt like seeing Baltimore for the first time in a long time, and it was glorious. I locked up outside the Sidney Kimmel Cancer Center, parking spot right in front, and headed in. I was early, so sat in the lobby and proudly let social media know that I managed to ride my bicycle. I heard someone call my name–hello! But then I realized where I was, where we both were, and my heart sank. We were both there for cancer. They headed upstairs for chemo, I headed down for radiation, swiped my card, changed into my gown, and waited my turn on the big machine.
This was my second trip inside, the first the day before for an hour of pictures and panic and prone positioning. I’m not ready to write about that. This day would be shorter, and we’d get started, which meant we’d get finished.
But they couldn’t start. They need more pictures, the doctor’s not happy with “the plan,” which is important because the plan is about radiating my breast without radiating my heart or lungs, and I need those things. It is for the best, but months of frustration exploded at this news, and I made a scene. I threw my gown around. I wept. I yelled, I called a room full of people who are trying to save my life “liars” because they said we’d start today, and we didn’t. I wept in the waiting room, wept on another CT table, cried in the lobby, at my bike, with a social worker. I walked my bike and cried on the phone to my sister, to R., to N. Tears fell as I rode my bike to a coffee shop for an expensive pastry, as I rode my bike all the way home when that pastry didn’t make me feel better. I cried so much on Friday. I didn’t even stop long enough to notice that I rode my bike like I used to ride my bike–I can still do it. And then I realized that cancer got in the way of enjoying this victorious bike ride, and there I was, crying all over again. I cried for hours and hours until my face hurt from it all.
I needed to cry, and I’m glad I did. And I’m glad today was another beautiful day, and that I got to ride my bike around–to acupuncture, to a literary festival, to this freeway overlook, and back up the hill to home, just like the old days. Today was a beautiful day to be alive, and so was yesterday. The full range of human emotions. Big range indeed.
Radiation Week #1
April 22, 2018
Once radiation got started I got in a routine, and now I'm just doing it. No side effects yet--the doc said not to expect them for a couple of weeks--and I'm feeling good. I even forget I have cancer for hours at a time. This astounds me. Back at the hospital in the morning for week 2!
A Bike Ride
April 23, 2018
Today’s ride took me over to Johns Hopkins east hospital campus, as per usual. Today is the start of my second week of radiation treatment, and I got up plenty early to ride my bicycle for that 8:15am appointment. The promise of 70 degrees and sunny made me almost too excited to sleep.
The appointment was a quick in-and-out, leaving me the rest of the day to ride my bike around. I walked it through Hopkins and then through Dunbar High School, pausing to greet the ducks washing themselves in a puddle in the faculty parking lot. Oh, Baltimore. I crossed Central Avenue to get my helmet on and head south. I snapped this picture through the fence at this empty field. Johns Hopkins has been doing a number on East Baltimore for a long, long time, and this field is part of the next phase. At a panel at UMBC last week academics and organizers talked about the need to preserve the history of these neighborhoods before they are cemented over with another. It all happens so fast, but also so, so slowly.
I biked down to Harbor East, drank some coffee and ate a baked good delicious enough to almost make me forget I was sitting on top of a toxic waste dump. Barely a mile from Middle East, and it was like I was in an entirely different city. And then I walked my bike east, talking to my brother on the phone, before getting back on my bike to head to Canto to eat lunch and buy a bra without a wire because I’ve got maybe another week before the underwire bra is against medical advice. I rode back slowly, up through Highlandtown and weaving north and west, north and west, back through Middle East and to home. I remember days like this. I though I wouldn’t get them anymore. Just five months later, here I am. Cue tears.
Radiation Week #3
April 30, 2018
I started my third of four weeks of radiation therapy today. I ride my bike there, was in and out am in ten minutes, and rode home to get some work done before an afternoon with a visiting friend. I'm still feeling good, but I can see the fatigue setting in. Around 3pm the past few days I just turn OFF. I'm so, so tired. I remind myself it's temporary, and now I'll head to bed. Thank you for your continued support!
End of Whole Breast Radiation
May 5, 2018
I finished whole breast radiation on Friday! Woot! I climbed on my table like I've done for the last three weeks, face down, arms up, and let them move me around, twist my breast through the whole to get as much tissue (that's what they call my breast) through the hole as possible, and then the machine was whirring around me. "Don't Stop Believing" came on the Pandora, and for some reason it all made me start to cry a little bit. So close to the end of this part. I've got feelings.
And then I asked them to peel the stickers I don't need anymore off of me, and they did, and I lotioned up in the changing room. My phone rang, my sister. She missed the call with her biopsy results. The doc wanted her to come in to discuss them. My heart sank. That's not a good sign, when last biopsy the doc said "benign, see you in six months." I got on my bike and rode home, so when she called from the doctor's office to tell me she had cancer I'd be at home. And I was, when the test came through: breast cancer, 6mm, er/pr positive, her2 equivocal pending FISH. Breathe in, breathe out. I wish she didn't have to do this. And I'm ok, and she'll be ok, and these are separate journeys, but we'll take them together, like we always do. Usually it's more fun.
Four more sessions and I'm done with active treatment. I'm so excited about that.
Penultimate Radiation Appointment
May 9, 2018
Today was a beautiful spring day–sunny, not too hot–and I had my penultimate radiation session at Hopkins. I rode my bike the way I ride my bike to the hospital, down Barclay, a left at the Tool Library, across the street and another left at the cemetery, a right, a left into a terrible bike lane, and a right into a slightly better one. I locked up outside on a rack that’s not bolted down and grumbled about that in my head before spinning through the doors to the elevator down to the basement. It’s amazing how quickly routine becomes routine, and this has been mine for the past month.
I drive some days, so I can then drive on to work, and I’ve taken a car service a few times at the beginning when I was still put out by chemo. But I prefer to bicycle, by far. It makes me feel normal, like there will be a normal after all this. Some people seem to learn a lot from cancer and exit treatment with bold plans to reorganize their lives and priorities. I’ve learned from cancer that I mostly have my priorities in order, and I love the life I have. I’m so pleased to see it peeking through the curtains. I also like riding my bike to radiation because I like taking off my helmet, my still-mostly-bald head telling everyone at the cancer center that I’m a patient, hoping they see that I’m ok, because I am ok. I ride my bike to radiation because I’m ok.
I was in and out in minutes and got a call from my sister as I exited the building. She was waiting at her cancer center for her first appointment with a breast surgeon. She’s at the beginning of this road. I’m at the end. I was right back there, though, in the early days of fear before you know what’s going on and what’s ahead, when every meeting is a reminder of what you don’t and can’t know yet, when the numbers look good but you also know there might be something behind them. From six months out, though, I know that I can roll with the punches and roll on, and so will she.
We talked and texted as I pushed my bike down the hill of South Broadway toward the $4.50 blueberry muffin I found a couple weeks ago. I wanted it again. I stopped to snap this picture of the lacy ironwork on this building at Baltimore Street. It looks like New Orleans, and the air feels a little like that place, too. I used to live there, that used to be my routine, but now it’s something different, and it’s routine here now too. I wonder what it will look like in the coming months as I transition away from active care and to what they call “survivorship.” One day at a time.
And then I rode home, more calls, she’s scheduled for surgery on Tuesday, barring MRI issues. Great. That’s great news. I hopped back on my bike to the dentist, then home again, then a walk to a late lunch, because this is what survivorship looks like today.
End of Active Treatment
May 12, 2018
I am done with active treatment, and my skin is still degrading, open sores developing, itching and painful, my poor left nipple raw from the inside out. It will get better slowly. I am at the end of active treatment. It is glorious.
My sister is at the beginning. It feels like a recurrence already. It is excruciating.
Cancer is such an educator, but I have to admit, I am tired of learning right now.
Tamoxifen
May 26, 2018
I am three weeks out from radiation and almost a week out from a much-needed trip out of town. Maine was beautiful, and I can't wait to go back. I picked up a little something on the trip--my period--and we've now spent 9 days together with no signs of stopping. Ugh. Bodies are the best/worst.
I met with my oncologist on Thursday, and after much discussion we decided to start tamoxifen rather than aromatase inhibitors. That surprised me a little, but I trust him and his judgment, and I'm happy to avoid the many side effects of early menopause. I guess. We'll see how this next phase goes. What I don't second guess is my relief to be moving on from active treatment.
Thank you for your support on this road. I expect twists and turn to continue to turn up, but for now, I'm going to try to get to the business of living.
A Bike Ride as Emily Has Surgery #1
May 30, 2018
The wildest thing has happened, which is that I’m done with active treatment for cancer and I’m already able to do things with my body I kind of feared I wouldn’t be able to do again. The last six months were brutal in so many ways, and also less brutal than I was expecting, but as I emerge on the other side of this round of cancer treatment, I’m getting back to living as I used to live. My sister and I have been talking about those stories of people who survive cancer and then reinvent themselves in amazing ways. We agree those are likely people who didn’t like the lives they had going all that much. Me? I loved the life I was living, and getting parts of it back so quickly is a huge gift. I’ll take that over being a SuperSurvivor any day.
And the best return is the bicycle commute. I think I likely could have done some bike riding throughout treatment–and I did do some, including rides to and from radiation treatments when I didn’t also have to get out to work. The problem was that I couldn’t trust my body in any way whatsoever. There were days–weeks–when I would get out of breath and need to sit for a half hour to recover from walking the laundry down a tiny flight of stairs and hoisting it into the machine. Ride three miles uphill after a workday? Nope, not going to happen.
But now it’s happening again, and it feels amazing. Friday’s ride took me over to Druid Hill Park to check out the work on the new water infrastructure project (dusty), Monday’s to check out a hula dance class at the local move-your-body-in-new-ways-and-see-how-it-feels place (it hurts so good), and Tuesday’s down the hill to check out the cheap gym, up to Mount Vernon to meet a friend for an afternoon beer, and then home again (joined the cheap gym, ate tacos and drank one beer, rode slowly home). These are normal rides, and when I leave to take them, I’m not worried I won’t be able to make it back. I’m in the part of cancer where I get to establish a new relationship of trust with my body, even though it’s trying to kill me. It is a wondrous place to be.
I snapped this picture on my way home on Tuesday as I waited in the cycletrack at North Avenue. There’s a lot of talk about investing in remodels of markets all over the city–Cross Street, Lexington, Hollins–but I wonder what this market used to be. It was an idle thought until the light turned green, I said my how-you-doins, and huffed and puffed up the rest of the hill (I’m not back to my pre-cancer fitness, that’s for sure!), a right on 27th, and the pleasure of pedaling along flat ground after that steady incline.
My twin sister had surgery for her breast cancer while I was out riding around town. I’m sorry she has to do this, but she’s got this on the other side–a heightened awareness of what a great day it is to be alive. I wouldn’t wish it on anyone, but it is what it is.
Follow Up
June 26, 2018
Hi, everyone! I'm six weeks or so out of active treatment, through my first 30 days of hormonal therapy, and am now marching through the many follow up appointments that greet me going forward. I had an annual exam, a transvaginal ultrasound to set a baseline for uterine lining thickness (tamoxifen can cause a thickening that can, in rare cases, become cancerous), a uterine biopsy because why not, and a six month follow up with the surgical nurse. Coming up I've got a physical, a follow up with my medical oncologist, and then scans in November to see if cancer is in remission.
I'm feeling good, almost back to myself. My hair is growing in. I'm back to riding my bicycle for transportation like the old days. I've been exercising every day, finding new classes to take as I try to make friends again with the body that's trying to kill me. I'm not currently falling into that depression so many warned me about, I think because I've been feeling the full weight of emotions all through this thing. And I'm feeling them now--the middle-of-the-night wake up, heart pounding with fear that cancer is back and everywhere; jubilation at being alive; boredom as summer rolls on; anxiety with aches and pains that I know are arthritis in my toes or headaches from not drinking enough water but that make me worry, for a second, that it's back. I feel good, and sometimes I don't feel good, because that's life. And I'm thrilled beyond measure to still be living it.
Thanks, as always, for your support. It's a rollercoaster, and I'm glad to have a stretch of calm at the moment.
One Year Anniversary
November 16, 2018
One year ago today I had a biopsy. At that biopsy, the radiologist told me I had cancer. "If this comes back as benign, I will assume the pathologist made a mistake." I had cancer, but I also didn't have cancer yet. 99% chance still leaves room to not have cancer.
But I did. And here I am, a year later, just through my first round of post-treatment check ups and check ins. Last week I had a clear mammogram and a follow up with my surgical oncologist's nurse. She was terrible, but not for cancer-related reasons, which was a relief.
Yesterday I met with my radiation oncologist and her nurse for our six month follow up appointment. I was so happy to see them, tears in my eyes with gratitude for the way they helped save my life and the kindness they showed me while doing it.
I have all my follow ups for 2019 already on the calendar, including my next imaging: an MRI at the end of May. Now I'm back to my life, mostly. Except, of course, for the part where I think about cancer every day. I think about my sister's cancer, too. She starts radiation today. Someday she'll be doing her six month check ups, but I bet it doesn't seem to her like that'll ever happen. Treatment is the longest marathon, and she's been at it longer than I was already.
Six months. I won't have to find out if the cancer is back again for six months. These six months have flown by, and they've been fantastic. And it's scary how quickly six months can go. What if it comes back, if I have the average of two years left, and six months go this fast already? It's hard not to look ahead, but I am trying to learn how to look down and in, and what is happening right here and now. Today I don't have cancer. I'm alive. I'm grateful. And I'm still scared sometimes, but that seems part of the privilege of being on this earth. I'm dealing with it. I hope all of you are well as well, a day at a time.
Breast Cancer Awareness Month
October 9, 2019
It’s Breast Cancer Awareness Month. This is the month when everything turns pink—in the grocery store, on the football field, at my gym, at school fundraisers, in every sales pitch I get over text or email, literally everywhere. Pinktober is here, in full effect.
For me, though, it’s always breast cancer awareness month. I’m always aware of the disease, all day, every day, because In November 2017 I was diagnosed with breast cancer after a routine mammogram at the American Radiology on Fleet Street. It came as a total shock—I never expected those routine tests to catch anything. But they did—an 8mm tumor in my left breast, at the 10 0’clock position, a couple inches north of my nipple. I thought I understood the disease before this happened. My mom has been through it twice, two aunts, a lot of friends, and every October I was reminded to be aware of it. But I had no idea what breast cancer really meant.
Here are a few things I’ve learned over the past couple of years that I’d like to share with folks as we “celebrate” this month. It’s not about “saving the ta-tas.” It’s about saving people, human beings. All of us have breast tissue, and that’s all it takes to get breast cancer. This month we’ll see lots of images of cheerful cisgender women who are all smiles, but that’s not the reality—people of all genders get breast cancer, and treatment does not make anybody smile. It is absolutely brutal, and whether or not it saves you is largely up to chance.
Except that it’s not, at least not altogether. It is true that there is no way to predict whose cancer will metastasize—spread beyond the breasts and lymph nodes to other parts of your body. This is something I never really understood about breast cancer: once they find the tumor, there’s already a chance cancer cells have moved through your body and taken up residence in your liver, bones, lungs, brain, or somewhere else. If they wake up and grow, you’ve got metastatic breast cancer. The chance of making it to five years once that happens? Around 25%. Some say it’s a chronic condition, but that doesn’t sound chronic to me. That sounds terminal—the end, death.
Some factors in one’s favor to not metastasize and die? Being white, and having access to advanced medical care. Black women, for example, are seven times more likely to die of breast cancer than white women, even though they are less likely to be diagnosed in the first place. This has everything to do with whose health is deemed important, whose voices are heard and taken seriously in the doctor’s office, and who has the time, space, and money for routine and extraordinary care. Having the money not only for health insurance but to cover the unreimbursable expenses from lost work, lost energy, and lost hope makes for better life chances, too. Breast cancer is a solitary experience, but how that experience goes has everything to do with larger social structures of inequity.
Here’s how my experience went. My breast cancer treatment started with a lumpectomy and removal of my sentinel lymph node—the first in the chain that leads from the breast—to see if my cancer had spread there yet. It was an outpatient surgery, uneventful, and afterward my wife and I stopped by the pharmacy to pick up my prescribed pain meds—ten oxycodone pills. The pharmacy wouldn’t fill the prescription for some bureaucratic reason that hopes throwing up roadblocks to access will stem the rise of opioid addiction. Pain pill addiction and abuse is caused partly by the availability of the drugs, sure, but it’s also related to living in a world that pushes many of us to check out by any means necessary. And sometimes, yes, we need the pain pills for pain. It took a lot of weeping calls to a lot of after hours doctors and pharmacies for me to get the meds I needed to stay ahead of the pain, a reminder that my individual issue is part of a much larger war on drugs that doesn’t do much to change the world too many of us seek to escape.
A few weeks later I was in my oncologist’s office to hear the news that though my tumor was small, it had aggressive features, and I should probably do chemotherapy—four rounds over three months. It wasn’t presented to me as an option but as a necessary part of my care. My insurance company paid over $10,000 per round, and that was the reduced price they negotiated with Johns Hopkins. The costs are astronomical, and even if you’re lucky enough to have the costs covered, it’s incredibly expensive to be as sick as chemo makes us. My workplace took a lot of work off my plate so I could take care of myself first. I got paid my full salary for certainly not full work, a luxury few cancer patients could ever afford.
A few weeks after chemotherapy I started radiation therapy. I got a short course, two weeks shorter than most, because I’m lucky enough to live near a cancer research center whose care my insurance agreed to pay for. I had to have the same appointment time every day, and I couldn’t choose the time. They wouldn’t tell me my time slot until two days before I got started. My teaching schedule couldn’t be moved, but I couldn’t guarantee a time slot that would allow me to keep my job, no matter how many white girl tears I cried. It’s a business, and they slot you in when they can slot you in. What if I were also managing child or elder care, or had an hourly wage job some distance from the hospital? It would be devastating, and I might even have weighed my options and skipped it altogether, increasing my risk of cancer’s return by 40%. Nothing but luck that I didn’t have to make that choice.
I lucked into a slot that worked for me, and four weeks later I was done. “Done.” My radiation oncologist announced that I was “fully treated.” I haven’t beat cancer. I’m just fully treated. And now I wait. I’ll know I’m cured when I die of something else. A day doesn’t no go by that I don’t think about cancer, that I don’t wonder if it’s back, or if it is back for my twin sister. She was diagnosed just as I finished up radiation. It has been shattering, and I am the luckiest cancer patient I know. Because not only do I have the structural supports that make extending my life more likely—my whiteness, my wealth, my good state job with benefits fought for by unions I’m not even in, the time and ease to schedule routine screenings—but I have the support of a middle class circle of friends and family who have made this brutally expensive disease affordable as they drove me to work every day, paid for my Lyft rides to treatment, and pitched in for food deliveries they knew my wife and I would need when in the thick of it.
Breast cancer hits so many of us so hard, but it lands a bit easier when we live at intersections of privilege. The Pinktober narrative of the plucky survivor who smiles through treatment and comes out grateful and ready to enter all the walkathons erases the background that got us sick in the first place, and the structural inequalities that determine which of us has a real shot at getting better. Racial, class, and gender inequalities aren’t just talking points. They are violence, they are premature death, and they are at the front of my mind this Breast Cancer Awareness Month. Breast cancer is a social, political, and economic disease, and pink just won’t cut it for me anymore.