Diagnosed with Hodgkins Lymphoma on March 1st, 2018 (18 months after this photo was taken & 12 weeks before I finished grad school), I’ve been telling the internet about it ever since–now in remission and figuring out my new normal. I am a writer, trained social worker (with a focus on trauma), and forever henchwoman for various social justice fights. Midwesterner at heart (STL & Chicago) and currently live in Brooklyn with my husband and tiny, sassy dog.
To the mamas: having kids in a pandemic seems ROUGH—and I know there are factors making everything even harder—if you are doing it solo, like my sister (alone in a house with two boys for five days at a time while working, someone please give her a medal); if you have health issues; if you’re a frontline worker; if you’re out of work; if you’re doing this for the first time, like two of my dearest friends who recently had babies in the midst of a pandemic (babies I can’t meet anytime soon, I’m very sad); or if you’re pregnant in this scary moment. The list goes on and on. Maybe none of those but your kids are losing their shit because none of this is normal and they won’t pretend that it is because they know better. Sorry this is so hard. You’re all amazing. Also: I hope someday we celebrate you with things like universal paid parental leave, better maternal mortality rates, and affordable childcare. That seems better than flowers but maybe we can do both?
I’m also sending love to everyone with complicated feelings of grief or loss today. It’s a loud holiday, especially if you’ve lost your own mom. Or maybe you have a hard relationship with your mom that doesn’t match the roses on social media. It’s complicated.
And finally, to everyone still trying, still hoping, still waiting, not where you want to be, enduring miscarriages, shooting hormones into your body, not sure if it’s right for you, or maybe surrounded by people having babies and just feeling lonely—for anyone who is sad about today for the millions of reasons that exist: I feel ya. I’m sad today too.
I’m with you as you sit through every careless
“your time will come.”
“when’s the next one?”
“you’d make great parents!”
“what are you waiting for? there’s never a GOOD time.”
“you don’t want to wait too long.”
“it really made my life complete.” (suggesting that the rest of us are, ya know, incomplete?)
“what do people without kids even do?”
“wait until you have kids..(insert literally anything, parents say this all the time)”
“I’ve dreamed of these moments with my kids.” (yes, same!)
I’m with you as you sit through appointments with doctors who tell you the grim things you might have to do to have a child, the risks you might face, the odds that are against you.
Society at large seems to think it’s okay to ask questions, apply pressure, make assumptions about these incredibly personal, complicated aspects of our lives. Let’s do less of that. You never know what people are holding.
Sometimes I’m not even sure I want to be a parent when I’m allowed by my doctors to try (a couple years off still)—maybe I won’t want to put my body through it or take any more risks (of recurrence while pregnant and the termination that might have to follow, of heart failure during labor from my chemo drugs) and more hospital visits. I’m not sure what will happen in the future, what will be right for us.
But I still cry every time someone I love gets pregnant or gives birth, which these days is a not-infrequent occurrence. And I still ache a bit when I see baby photos, when Nico does something particularly dad-like (also a not-infrequent occurrence). Luckily, my friends tend to know that. They handle me gently, and I am grateful.
Once, after a careless comment from someone, I quietly excused myself to cry in a public bathroom. I texted a friend who had a hellish-by-any-measure time getting pregnant: “how did you handle the things people said to you back then?” She replied immediately: “I basically alternated between wanting to punch anyone who talked to me about their pregnancy and crying in a lot of bathrooms.” She’d been through way, way more than me on this front, and my desire to punch anyone is less frequent.
But the crying in bathrooms? That’s me in the next stall.
The more I’ve shared about these moments, the more knowing nods and stories of sudden tears I’ve heard from friends: in the bathroom at a baby shower right after a breakup, at the Nutcracker surrounded by happy children and their parents, on the phone with a dear friend who has just given their pregnancy news, after a family dinner when too many questions were asked by a mother-in-law, at Christmas after watching someone else’s kids light up as they unwrap presents.
And, of course, Mother’s Day.
I started to feel less alone hearing these stories. Life is hard and it can be lonely, but it is less so when you feel like someone is also crying in the next stall. They see you.
Today, cheers to all who mother in a myriad of ways. Thank you to my own mom, and the many moms who love me and make my life what it is. And also cheers to complexity, to there being many ways to be a family, to the stories we don’t know, and to our friends, for being gentle.
Today we’re going to talk about COVID-19, what I’m doing, my personal tips on staying sane while social distancing, and what else you can do to help during this pandemic. I hope it’s helpful.
So here we are, Nico and I are back in isolation! For those who don’t live in New York City or a place where COVID-19 feels like a sleeping giant ready to take us all down, you might think I’m overreacting. So far, I feel like the responses to COVID-19 fall into two camps: people who are taking it very seriously, and people acting annoyed that other people are taking it very seriously. To those of you who are annoyed, please do your homework. Read things! Respect the decisions of people trying to stay safe, and ask yourself how you can help.
This article is a GREAT place to start if you’re wondering why people are staying home. It’s not just about YOU not getting sick, it’s about flattening the curve, suppressing the rapid spread of the disease so our health system doesn’t become overwhelmed. Protect your community if you are able to do so. Also: taking precautions does not mean we’re panicking–it’s being deliberate and mindful that we live in an interconnected world. https://www.vox.com/2020/3/10/21171481/coronavirus-us-cases-quarantine-cancellation
Because here’s the thing: we don’t have the health infrastructure—adequate testing, ways to quickly increase hospital ICU capacity, accessible and equitable health care— to handle a pandemic.
For those with privilege—health, racial, economic, to name a few—there’s a lot of talk about using privilege for good. I think sometimes this is a way to comfort ourselves that the privilege we have isn’t an all-bad thing, even though it’s probably the result of structural violence, racism, etc. Setting that argument aside because it’s a whole can of worms, I think most of the time “using privilege for good” looks like donating to the ACLU. Which is fine! But this is a moment when using privilege and taking immediate action can directly save lives: if you are able to work from home (I know this is a big IF), to cancel commitments, to practice social distancing without it being a major financial burden for you and your family, you should do it.
Think this is just about older people and sick people? Maybe you’re perfectly healthy and you can’t quite imagine how this would affect you. Know that that is its own form of privilege. Think you don’t know someone who is in danger? If you’re reading this, you probably know me somehow. My immune system has not recovered from treatment and I’m still considered immune compromised—and my counts at my last bloodwork visit 6 weeks ago were the lowest they’ve been since treatment.
I also traveled to a wedding this weekend because when I emailed my oncologist asking if it was safe for me to go, they said they follow the CDC guidelines, which were not yet telling people like me to avoid crowds and travel. The guidelines literally changed while I was at an airport in Montana about to board a very long flight home, after being around hundreds of people at events all weekend. Now I’m sick—not with COVID symptoms, thank goodness—but this means my immune system isn’t fighting things off and I was vulnerable during all of that contact. It turns out that the CDC tried to change the instructions earlier, and the Trump administration overruled them for no scientific reason. I would never have attended the wedding had the administration listened to the CDC. Our federal leadership always matters.
I can’t change the last week, but right now I can stay home, and so can Nico. Google has recommended that people work from home until at least April 10th. He is privileged to be able to work remotely and have an employer who sees action as necessary and provides health insurance. So we are home. I am trying to get less sick to get my immune system up before we come into contact with basically anyone else. We are flashing back to my chemo time. Fun, right?
But you know who cannot stay at home? A LOT OF PEOPLE. 25% of American workers do not have paid sick leave, and others have employers who won’t create systems that allow people to work from home or to take time off preventively: this is inhumane for a lot of reasons, and we’re about to see how dangerous these policies can be. It means that many people are going to have to keep going to work to pay bills, support their families, and not lose their jobs. It also means that people who can’t take preventive measures are going to need medical care.
A lot of folks also do work that keeps our society functioning and as long as they’re healthy, can’t stay home–this includes health care workers who will be putting themselves at risk to take care of others (and who have not been supported by sweeping protective policies). So if you can stay home (and I’m going to acknowledge again that a lot of people simply cannot and this is messed up): DO IT. Help preserve medical care for those who can’t take preventive measures. Help us keep our health systems from becoming overwhelmed. FLATTEN THE CURVE.
This Twitter thread is wonderful and illuminating as we talk about deciding to make changes to our day-to-day lives. Yes, it is hard to take these measures. But if I could have changed my behavior, whether short or long term, and prevented myself or those I love from getting cancer and being truly sick in a life-threatening way, I absolutely would have done it.
Even if you can’t work from home, you can take steps to not be in crowds–encourage institutions to stop having large gatherings, cancel your plans, and make people around you feel comfortable making the choices that are right for them. If someone else cancels, don’t act like they’re being crazy. Ask yourself what is truly necessary to be at in-person.
Think social distancing sounds annoying and not fun? As someone who did it for almost 9 months, I hear ya! Did you read this blog and think my having to stay home didn’t seem like a big deal? Now you get to try it out for yourself. I would be lying if I said I wasn’t a little fascinated to see how other people respond to it, since people often just nodded along, acted like my having to stay home for the better part of year seemed normal and fine. So welcome to the world of living only in your house.
Yes, you will miss things. It sucks. So far this week I’ve had to cancel my attendance at a workshop with an author I love, which was sad for me. I missed 13 weddings while I was sick. I (mostly) got over it. You’ll get over it too. If you’re lucky, life will go on. It’s been hard to not get annoyed with people already complaining about this because once again, welcome to my world!
And yes, you’ll get cabin fever. Social distancing is not like normal working from home. Maybe you’ll do things during the day, and then there’s not a ton of reprieve from the world of your home. You’ll spend a lot of time alone (unless you have kids, in which case I recommend finding a way to have some time alone, even if they’re home too, so you don’t lose your mind).
Here are some things I did to stay sane, and I recommend to everyone:
- Make your home or space livable: clean up, tidy, move stuff around so it is more workable for you. This is what Nico and I are doing today as we prepare to be home together for at least the next month. When you are stuck at home, those piles of stuff will drive you crazy: get at them now. Clean those floors. Make this a space you want to be in. We are moving a tiny desk into our bedroom so I can work somewhere while Nico is on calls—we have a 700 square foot apartment (huge for NY, TBH) and a postage-stamp sized bedroom, but we’re moving some furniture to make it work better. We’ve actually never been isolated this long or this often together, I was mostly solo, so that part is new for us. Stay tuned for how it goes.
- Worrying about germs is scary and hard. Creating a system for yourself when you leave the house and come back in helps. When you do need to leave, have a system for how to touch or not touch things, when to use hand sanitizer, etc. When anyone comes over, tell them your system: “hey, I ask everyone to take off their shoes and wash their hands, I know it’s annoying but it’s what I do!” When I come home, I do those things, wipe down my phone (please folks, phones are GERM BRICKS–we keep cotton pads and a bottle of rubbing alcohol by the door for this), think about what in my bag needs to be sanitized immediately, and put any bags and coats away. Don’t leave them out to constantly get germs everywhere. That way, I can relax afterward. I also wipe down things I touch a lot around the middle of the day—sink handles, fridge handle, doorknobs. AND WASH YOUR TOWELS. They’re germ factories. It’s all part of my usual higher-caution routine. This is much easier than feeling like you’re making up rules as you go or like you haven’t done enough (this can start to eat at you in particular). You want to feel safe once you’re settled in, and you’ll feel better if you have regular precautions that you take.
- Have a rhythm to your day. Get up, make coffee, give yourself a schedule for what you do and when you do it. Create a fake new normal. This sounds basic and un-sexy but it helps.
- Start watching a show or listening to a book in tandem with people you know. You are no longer going to have as much stuff to talk about—what happened at work, where you went, what you did. When Nico got home from work while I was sick, I used to hear about what he did all day, and then I’d be like “um yeah so today was just like yesterday? Here’s what I read on Twitter?” It got better when we were reading something together or watching a show. I also watched shows a few friends of mine knew like the back of their hands. I could be watching alone (I was mostly alone 5 days a week for 8 hours a day for 9 months, so this was often the case), and I would text them observations or commentary. One of my friends has seen all of Cheers and Frasier and knows the characters and story arcs well, ditto for another friend with the West Wing, and another with the Nanny. I would just spark up random conversations with them about the shows. They were always willing to shoot the shit about these fake worlds with me. I also read the same books as some of my friends (particularly a super-hero-ish YA series called Keeper of the Lost Cities) and would text all my thoughts about it to them. It felt like socializing. This time around, my nephews and I are long-distance watching all of the Marvel movies in chronological order (the order in which they happened in the Marvel universe, not when they were released–apparently an important distinction for Marvel People).
- On that note, read! I couldn’t really read for a lot of treatment due to chemo brain and some floating proteins in my vision from the drugs; they made pages pulsate slightly and I’d get headaches if I tried (I am a big reader and this was particularly punishing for me). I listened to books instead, but this time around I can read. Reading will set you free! And if you don’t usually read fiction, now is a good time to start. Inhabiting other worlds for a little while each day will help. Don’t forget to order books from independent booksellers—NOT AMAZON—because this pandemic is going to hit small businesses hard. Indies ship! Use Indiebound.org to find stores, or order directly from your local bookseller. Guess who is definitely not giving their workers paid sick leave? Fucking Amazon. Those books are important but don’t act like you absolutely need them tomorrow. You’re fine.
- Give yourself social media limits: do not—DO NOT—spend all day on Twitter or Facebook or Instagram. If you don’t usually work from home, this a big temptation. Don’t read every single article, don’t get involved in Facebook fights. Give yourself social media boundaries and challenge yourself to use your time differently. Otherwise, I can personally attest you will become an internet gremlin and hate the world.
- If you are physically able, take walks, and create regular walking routes that start to feel good to you. This is currently a little difficult for me because my nerve pain is pretty bad, and it was even more difficult for parts of treatment when I was in bodily pain and not breathing well—but I did it anyway. I had one short neighborhood walk I did, and then a longer lake walk for better days. I probably did these about 4-5 times a week. Getting out and being in fresh air—no matter how bad the weather—is important. I did it with some pretty major restrictions, and I’m guessing many of you can too. I took some COLD lakefront walks in Chicago but I think they were what kept me sane, kept my blood moving, and ultimately helped my body utilize my tiny supply of white blood cells to stay healthy. Find ways to move: workout videos, online yoga (I used Yoga with Adrienne), walks–if you aren’t physically up for it, even sitting by a window is helpful. Pick a workout video and do it in tandem with your friends. Get creative.
- Video chat! FaceTime is great, but the app I l really love is called Marco Polo. You leave video messages and can continue an ongoing conversation with people—this takes away the need for everyone to be available at the same time. It’s also great for groups of people, so if you’re feeling isolated and just NEED TO SAY THINGS, this app is awesome. One of my friends has had a chronic illness for two years and we Polo pretty much every single day. I honestly can’t recommend it enough.
- Create occasions. As I was writing this post, I came across this great Twitter thread that has some similar recs to mine. I think her rec of finding “small things to look forward to” is perfect. I had cooking projects (made homemade pasta last time, I’m going to try to learn to make bread this month because why not), I read a lot of food blogs to fuel my experiments, and I watched the Bachelor with some friends regularly. These nights became the equivalent of mini-parties for me. Do that long-distance! Declare that you and your friends or family are going to have Taco Tuesday or soup day or pizza night and then text photos, talk about it, watch the same movie together long-distance. Create reasons to feel like you are on the same page and do something small intentionally together. I know this sounds dumb and not that exciting..but social distancing will change your bar for what is interesting and exciting, I promise.
- Set hydration goals: hydration is key to remaining healthy. I have a big 30-ounce sippie cup and I count how many times I fill it per day. My goal is three times by the afternoon. Add lemon, mint, whatever makes you want to drink more water. Goals in general—number of walks, amounts of water, baking a perfect loaf of bread—are good and prevent the crazies.
- Don’t drink alcohol during the day. This is a slippery slope.
- Change out of your pajamas in morning! Nico could tell what kind of day I’d had based on whether I was still in the same pajamas and robe he’d seen me in when he left for work in the morning. Brush your teeth (also important for keeping bacteria out and your immune system strong) and ideally wash your face (live your life though). Even if you change into something just as comfortable as pajamas, which is definitely what I do, it’s still helpful to reset yourself.
All of these things will help you end the day thinking to yourself: “I did things today! I’m a person!” That was my goal—to still feel like a person who did things, no matter what. If this lifelong extrovert who loves parties and being out in the world could stay home for most of a year (while feeling like they could die any day!), you can do it for a few weeks. Buck up. Don’t complain too much. Recognize your privilege and have some grace and respect for those in other situations.
My amazing grad school classmate turned these tips into a series on Instagram. You can see them all on her feed:
What else can you do?
Ask people in your life if they need help. If you’re healthy, ask if they need a grocery pick-up or a meal made. This is going to be difficult for lots of people, and especially difficult for already-overwhelmed caretakers. The idea of something like this happening while I was on treatment and we were already coping with so much is tough to even wrap my head around—think about the people you know who might need help.
Pissed off about worker’s rights? Donate to the action funds of unions like SEIU, the National Domestic Workers Alliance, and to local worker’s rights organizations like the Fair Work Center in Seattle, the Workers Defense Project in Texas, and TakeRoot Justice in NYC (where some of my brilliant dear friends work—thanks guys!). They fight for worker’s rights and better life conditions every damn day.
Wondering how people without savings and other resources are going to manage quarantines because we have no safety net in our country? It’s going to be awful and hard and I hope we keep this in mind as we go into the 2020 elections. Economic inequality is at the heart of all of this. Right now, you can also donate to local food bank projects. They are mobilizing and they need support. I’m donating today to God’s Love We Deliver, an organization in NYC that provides meals to people living with illnesses (it is non-sectarian, and many recipients are living with HIV/AIDS and cancer).
I encourage everyone who can to take action. Talk to your friends and family. Order from local Chinese restaurants, don’t be racist, and buy gift cards to small businesses. Read all the books. Don’t spend all day on social media. Stay safe out there! Thank you for coming to my TED talk!
Two years ago today, I was discharged from the hospital after a five-day stay, a surgery, and on the heels of another day and night’s stay at a different hospital.
Obviously, it wasn’t the best time. Over that week, we went from not quite knowing what was inside of me to understanding that this would be my life for the foreseeable future (even without an official diagnosis, which came later). From my hospital room, we’d emailed and texted and called the people we love to let them know what was happening. I emailed my professors, figuring out what to do about my finals that week and class registration for my last quarter. I got tons of tests and blood draws and was in a fair amount of pain, in addition to the general fear and anxiety of waiting for the diagnosis.
But I also started to feel safe, cocooned by my amazing nurses. I met Dr. K, who swept into my room for the first time at noon on a Saturday with a fleet of people. She exuded capability and knowledge as she explained that she was in discussions with three different surgeons about how to safely do my lymph node excision and biopsy (the tumor itself was not operable and pushing on my heart and lungs, so there was concern my chest would collapse if the surgery was done the wrong way). There was a grownup in charge and I was getting things done, making my plans. My tumor was still pushing on my lung and trachea but if something went wrong, I knew they would handle it. While multiple tests a day was exhausting, it was also comforting that someone was telling me what to do next, what to eat, how to manage my post-surgery symptoms. There was this sausage potato breakfast skillet I loved (when I was allowed to eat) and part of me liked this information-gathering, purposeful phase.
It also felt like we were in a play, and if we all played our little parts well we’d get to go back, return to where we came from. I had to get one more test done on Wednesday morning, and was finally allowed to leave a little before 6 PM. My nurse gave us a pep talk on maintaining some normalcy, on finding a life in all of the strict medical instructions we were receiving. Our moms were both there, chatting with the nurse and writing things down and organizing all the stuff that had accumulated over the stay. Dr. K told us we’d come back the next day for diagnosis, then go straight to a fertility appointment to start IVF. As I left the room, I felt like a brave little soldier, dutifully facing the world as I walked gingerly to not jostle the long new scar on my clavicle.
To leave the oncology floors at Northwestern and get to the parking garage, you have to walk through the pediatric oncology lobby. It has a big aquarium and is brightly colored for the kids—it is as friendly as a hospital can be. But it also leads you past hollow-eyed, worried parents with their bald, impossibly young kids. Every time I passed a bald head, saw a little person with a surgical mask on, I cracked open a little bit.
With that walk, I realized we were crossing over. Into our new life, a different world than the one we’d lived in before we walked into the ER. This was no longer playing house at the hospital, where Nico set up a Chrome cast so we could watch TV and Kate ordered fancy pasta one night for a little party. Now I was one of the stories people walk past in the hospital lobby, a too-young person in a mask.
Nico and I suddenly and simultaneously started sobbing. This is not usually how we operate, and in the two years since it has never happened again: only one of us breaks down at a time, and the other stays calm. But as we walked out, we were both crying so hard that we had to find a bench in the parking garage, chilled by the Chicago evening and gasping in the fumes as we both tried get it together. Our moms were quiet, giving us time and space to let the moment happen. I have a vague memory of of my mom crying too, and Nico’s mom murmuring, “I know.”
We knew that this was the end of a hospital stay, but the beginning of something bigger and scarier.
One year later, in February 2019, we were sorting through everything we owned getting ready to leave Chicago for our move to New York. Now that we are a year out, I can say that I don’t think this was the right decision—we should have stayed longer so I could recover more first. I think Nico’s boss would have been supportive of us continuing to delay the move, and I was definitely not physically ready for the challenges that New York held. But as with everything that’s happened and the bizarre decisions that came with it, we were just doing our best with what was in front of us. Either way, we were busy, and I was still so sick that we didn’t have the distance to reflect on the anniversary. We just kept moving forward.
I again didn’t think much about the anniversary ahead of time this year—and then Valentine’s Day arrived, with its unmistakable reminders of time and occasion. Valentine’s Day 2018 was the week of my first ultrasound, and the day of mine and Nico’s last stupid fight before we knew how bad things were. It was one of the last days that I could pretend the lump on my neck was a fluke, something that I’d get antibiotics for and move on with my life.
This year, Valentine’s Day triggered a deep sense of grief, anger, and isolation in me. I haven’t spent a lot of time being angry in the last two years. Maybe once in a while, but mostly I try to be pragmatic or brave or just sad about missing out on things since I got sick and struggled through recovery.
But suddenly, I was furious. I’m working, doing freelance writing—I am, as always, lucky that I have skills I can use from home doing something I enjoy. But I can still only work for a couple of hours at a time. Then my brain hurts, and I can’t process things anymore. I get headaches and have to take prolonged breaks. Not like a 3 PM coffee to wake myself up (yeah I know, knee slap, we all need a little pick me up, whatever), more like an hour or more of cognitive rest so I can read sentences or talk to a human again and understand what they’re saying. The times when I literally can’t understand things are frequent, scary, and disheartening. I thought they would be over by now.
Last week (the anniversary of my first hospitalization, as we move along the timeline of anniversaries that my brain refuses to shake), we stood in line at the New York DMV, and it started to hit me that I might never have a Midwestern ID again. I am not a New Yorker. I think I’ll always be a St. Louis girl living somewhere else. Now that my family has moved, I don’t go home for holidays. I go to West Hartford, CT and stay in a random hotel while my friends in my real home get together and catch up and text me gossip (if you guys are reading this please keep aforementioned gossip coming).
The losses of the last few years—of my hopes at my planned career timeline or kids in the near-future, of my hometown, of the community I spent seven years building in Chicago, all piled up. For two years I’ve just tried to make the best of situation after situation beyond my control—my health obviously, and with the move, I wasn’t making money, I didn’t have my own health insurance. Nico’s career has an outsized role in our well-being and if he’s even late to work too often I start to panic about what would happen if he lost his job. I know we had to move sometime. But why did we leave Chicago and move somewhere so alien, so overwhelming, so unimaginably enormous? I miss Chicago and St. Louis and the people I love there with an ache I haven’t let myself feel before. This is a great city, but it is not home.
All of this pushed me into a new, unexpected rage phase. After the DMV, I had to email with my Chicago medical team trying to coordinate my next scan in April. I was pissed that I was back on the scan timeline, coordinating my life around it and feeling the worry creep back in, overwhelmed by details as I tried to decide which day to fly in, when to get the scan, which day to have an appointment, and tried to remember which tests I need to ask for in order to potentially get my port removed in May.
I laid in bed at night wired with anger: Why does everyone else get to move on, live their lives, do normal things without these kinds of arrangements? Without the daily fucking calculations about energy use and whether I can handle doing multiple things in a day? Without shooting neuropathy pains in their hips every time they they take a step? The world is a disaster, and I went to an immigration protest but it flared up my nerve pain further—when can I be the active person I want to be again? Why is my career this derailed by ability issues? I thought about my recent bloodwork visit, and the doctor telling me that I need to take extra precautions with Coronavirus: you’re not quite far out enough to be safe, he told me, so if they issue a warning for any population, you need to stay inside. I’ve lived in isolation already, for almost 9 months last year. It made me want to crawl the walls even considering the possibility, and I refused to think about it further. It wasn’t supposed to be like this, I think, over and over.
Then, because apparently this is just how things are going for us, my sister had a rough week in her ongoing, terrible divorce—yet another thing that was supposed to be better two years later. Why are we back here again, as if two years haven’t gone by?
I realized in all of this that, uncharacteristically, I don’t particularly want to see people. I don’t want to go out for drinks and pretend to be normal. Working again has been a big energy adjustment and by the end of the day, I’m too fatigued to be a normal person talking about normal things. So I gave up. I let a few people know that I’m not doing great, but you don’t get tons of follow-up questions when everyone has had to hear all of this for two years. They have their own stuff. This is the lonely time.
And I guess that’s the update today. Usually I try to end my blog posts on a high note, a hopeful glimpse of what’s to come. As always, I know that my life has lots of good things in it. I am deeply lucky and privileged. I know this will get better, that this is a phase I have to go through. I have also learned that intense gratitude can live just fine as a next door neighbor to rage, and that maybe they even make each other a little bit stronger.
I think everyone who goes through a grief process hits this isolating anger stage. It took me a while to get here, but I think it’s been coming ever since I sat on that bench in the Northwestern parking garage. So today, I’m going to give that forced positivity a rest. Hope will come back soon.
Three years ago this week, Nico and I got married, promised to stay together in sickness and in health. We didn’t know at the time, but I was already sick as I stood front of our family and friends in my not-quite-white dress; I’d been having what we now know were lymphoma symptoms for about six months.
But ignorance was bliss. Our wedding was a blast, the best party I could ever have asked for—and in some ways it’s hard for me to look at our wedding photos because I miss the people we were in them. We look so full of hope, so dreamy, like everything was falling into place and our options were endless. (Though I was pretty sick and fatigued our entire honeymoon, which in retrospect is a depressing red flag.)
Today, our life together is not what we thought it would be. I was diagnosed 18 months into our marriage, and our options and outlook have changed pretty drastically. In my first draft of this I wrote a whole bunch more about this part, but WHAT A DOWNER, you know? It also included some thoughts on society overemphasizing marriage as an institution, celebrating the wrong things as accomplishments, but I eventually decided that that wasn’t the right note for an anniversary post.
As I’ve thought about the last few years together, the night that keeps coming to mind is the first night I was admitted to a hospital. I haven’t shared my long, bizarre diagnosis story. But here is a snippet, costarring Nico:
It was February in Chicago, which everyone knows is basically the worst setting you could imagine. If I was going to write an overwrought fictional story about something terrible happening, I would set it in Chicago in February to tell the reader in no uncertain terms: everything is terrible.
At this point I’d had an ultrasound and CT that both showed something large and scary that shouldn’t be in my body. Not wanting to worry anyone until we had more information, we hadn’t told anyone beyond our parents, my sister, a couple of family friends, a couple of my Chicago friends who I hadn’t been able to keep up appearances with—otherwise, we were kind of pretending that there wasn’t a softball between my heart and lungs, that I wasn’t getting a needle biopsy in four days. I did school readings in the waiting room for my CT (I was in finals, one quarter from graduation). Nico kept going to work. It was a strange time.
The tumor was pushing into my left lung, and it had gotten harder for me to breathe comfortably even before the ultrasound a week earlier. My general practitioner put me on a high dose of steroids for about four days to help me breathe more comfortably, then abruptly told me to stop taking them. While she took me off of them because steroids suppress lymphoma cells and make a clean biopsy harder to get, you should never stop taking steroids without stepping down the dose because (as I learned the hard way) your body will freak out (seriously, if your doctor tells you to do this, ask lots of follow-up questions and maybe get a new doctor). It was Thursday night; I’d told my sister about the mass in my chest only the day before, and she’d gotten up at 4 AM, worked all day, flown to Chicago, had some whiskey with me, and was asleep on our pullout couch. A little insomniac already, I finally laid down around 1 AM. Just as I’d fallen asleep, I woke up gasping for breath.
One of the people I’d talked to since the CT was the research partner of my godmother, a brilliant neurologist who also had cancer at a young age. We’ll call him Dr. A. I’d read my CT results to him over the phone—no one walked me through these, my doctor just told me they were bad and I needed a biopsy. So when I dug through the online notes and read the size and general location of the tumor aloud, Dr. A was silent for a moment; he told me it was large, this was serious, and not to mess around if I couldn’t breathe. If you’re in any doubt, he said, go to the hospital.
I waited a while that night to see If my breathing would normalize. I did some yoga breathing, tried to discern if this was the same as the trouble I’d had breathing for the last week or so. If I can take five good breaths, I reasoned, it’s probably fine. I’d try to just get through the night. But I kept coming up short when I inhaled, like there was a stopper in my chest. “Nico,” I hissed, “I don’t think I can breathe.”
And then Nico’s first new superpower emerged: he could become completely awake in seconds. Who was this! Not the man I married. My husband could sleep through anything. When our old Chicago radiator would clang in the middle of the night, he could grab the piece of wood he kept by the bed and bang on it without waking up. Literally IN HIS SLEEP. But that night? Awake, alert, ready to go in seconds. First he held my hand as I tried to relax, tried to catch my breath. I couldn’t. Silently, speedily, we got dressed, me in leggings and whatever first warm black shirt I could find, him in his usual jeans and tee shirt and sneakers. We grabbed our big down coats and he told my sister we were leaving as we hustled to the car.
By the time we were in the car, I’d started to panic. I called Dr. A on the east coast, who luckily also has the doctor superpower of being able to wake up in seconds; he talked to me as Nico drove.
At a stop sign, I remember murmuring Nico’s name, hitting a new level of panic with every touch of the brakes.
You know how in action movies there are scenes where normal people who aren’t spies or bank robbers are suddenly in league with the spies or bank robbers and have to drive a getaway car? And you say to the person next to you “oh so he’s a race car driver now,” and you mock it for being unrealistic? That was Nico, IRL, with his next new superpower.
He immediately flipped on his hazards. The streets were sleepy, but not empty. I held onto my door as he drove on the wrong side of the street to zoom around the cars in our way.
What if we don’t make it? I asked Dr. A. You’ll make it, he told me, in his calm and gentle voice. And when you get there you’ll tell them that you’re a 30 year old with a 12×8 mediastinal mass and probable lymphoma. Tell them as soon as you get in. Got that? I stayed on the line with him, repeating that in a whisper, grateful to have anything to distract me as I tried to breathe.
I squeezed my eyes shut as he ran the red light at the large Clark and Halsted intersection. We’d made it, finally at the ER driveway. Nico sped to the curb with perfect accuracy—fast but just slow enough that we didn’t jerk forward, again like we’d been dropped into the Bourne Identity. Even in my panic, I remember feeling deeply impressed: who knew this mild-mannered man could drive like that?
I only remember flashes of what came next: a tiny area with a bed, nurses trying to keep me still enough to get an IV in. I was sobbing and scared and still couldn’t breathe, and blood fell on the sheets as they tried. Someone gave me oxygen and a nurse helped me take my first good breaths.
If you have ever been an interesting patient in an emergency room, rather than someone they treat one-handed with their eyes closed, you’ll know how scary and strange it is. There were so many doctors; I was wheeled out for tests, and each time I was wheeled back in, there was a different nurse or doctor, but always Nico waiting for me. Sometimes he was sitting on the hard plastic chair, sometimes he was talking to yet another doctor, sometimes he was making sure I had enough blankets in the freezing hospital or trying to get the nurses to give me water. As the many doctors decided to admit me upstairs and we waited for a bed, the hours since we’d slept crept toward 20.
This next superpower I already knew about, but I got to see it reach new heights that night: his ability to make anything cozy, find a way to create comfort out of very little. I couldn’t fall asleep in the noise of the ER, and I was desperately tired. Nico got me yet another blanket and closed the door, making the tiny room even tinier, and pulled out the book I’d brought. It was a Mrs. Pollifax book, a set of old paperbacks we’d taken when my parents moved, about a hilarious middle-aged woman from the suburbs who becomes a CIA agent in the 70s (hijinx ensue). As we sat in that little room with the sounds of the ER slightly muted behind the door, Nico read in a soft, even voice that belied his emotional state and our surroundings, like this was just any random night. A sense of calm settled over that strange little space, transforming it into somewhere only the two of us inhabited. I drifted off. Nico did not—he sat sentry next to me all night, terrified that the doctors were wrong, that I would stop breathing.
By the time my godsister arrived fresh off a red eye around 7:30 AM, I’d been admitted to a larger room upstairs after my few precious hours of sleep. Nico was exhausted. I found out recently that part of the emotional exhaustion was compounded by the way the doctors had talked about me while I was sleeping. An ER doctor pulled him aside, told him quietly that they were taking good care of me, that it was going to be a long battle.
After a week of pretending that this would be fine, even my eternal optimist had finally crashed at the unexpected gentleness of the ER attending physician. Maybe, he realized, things would not be fine. More than a year later, he told me that that night and for a while after, he didn’t think I would survive. I just didn’t see how you were coming out of there, he said, referring to this hospital visit and the next.
Luckily, he had backup. Nico went home around 8 AM and Kate and Meg took over at the hospital. He slept, a necessary thing that caregivers of all kinds forget or ignore or are forced to abandon. This was lucky; he rushed back when a surgery slot opened up around noon, and even though I could tell he wanted to, he didn’t break down as we signed the required end-of-life paperwork before I went to pre-op.
What came next is a much longer story: six days in-patient, two pre-op rooms, two hospitals, and a whole lot more scary paperwork were still to come that week (and that next year and a half, I guess).
But we made it through that first terrible night because Nico grew superpowers when we needed them. And we made it through the next day because I did the same: I bounced back, making decisions and propelling us forward when Nico got overwhelmed—and because we both knew to accept the help our family offered, rather than turn inward and become isolated. He put his own feelings on hold, his own fears about what this meant for his life, the life we thought we would have together.
When I was admitted a day later to Northwestern (we left that first hospital) and Nico first saw me in the oncology ward, fully outfitted with tubes and heart monitors in a room that felt oddly permanent, he broke down in tears. I laughed—which I’m pretty sure is not the appropriate response—and I yelled at him: “No no! This is good! We made it here! You’re only allowed to cry in the hallway!” He wiped his eyes, and in the midst of all the tubes and blood tests and the world turning upside down, we both laughed. How the fuck did we wind up here?
So here’s to my husband, my fellow lover of books and our tiny dog. The person who can always create a cozy little space, and will always find a way to laugh, even when things are dark and scary and absurd. I’m so glad you’re my getaway driver.
Last week, Nico and I went to Chicago where I spent two days in various appointments getting my body checked out. I got a contrast CT to check for lymphoma, and also had a breast biopsy because one of my (many) CTs during treatment turned up a small mass in my right breast. Following imaging in February (almost exactly a year from the day I found out about the first mass, because that is what I needed right at that moment apparently) we needed to get it checked out. It was a long, rough couple of days, but we found out at the end that I continue to be cancer-free six months out. I am relieved and happy and feel lucky and guilty all at once.
Here’s some context: After we moved, I wanted to act like I’d never been sick. I went out at night, I stayed up late, I drank as much alcohol as my friends who hadn’t had poisoned pumped in their bodies for months. I traveled for long periods, ate lots of restaurant food—which was not entirely my fault, we didn’t have cooking gas for the first month in our disaster of an apartment. I was overwhelmed by the move, our apartment issues, the realization that we might never have children, that my life has changed in ways that are still beyond my control. I hated (and still don’t love) how I looked post-treatment, it was cold and I was traveling so I was never home for long enough to develop a routine. I didn’t do yoga, go for many walks, or really exercise at all. When I was in town, I constantly needed to be in the apartment to let in someone to fix something or was on the phone with the city or a housing lawyer or the horrible, deeply sexist management company who ignored all of my messages until Nico started calling instead—this part hasn’t changed, as I write this I’m waiting for yet another plumber and will do the same thing again tomorrow—and so I was stuck here alone all the time without a working kitchen to easily make healthier meals. So I stopped trying, floating along in a haze of exhaustion and pushing myself to seem normal.
In the weeks before the scans, I did everything I could to ignore them. In both New York and St. Louis, I got to see my high school friends, a hilarious group of people I have known for 20 years. There is something comforting about letting your guard down with people who have seen you grow up. But that comfort (and too many drinks) also brings out the sadness and insecurities that I’ve been trying to bury and avoid in my daily life. It’s harder to hide around these people. It also reminded me even more of the person I used to be all the time and now only really get to be once in a while and with quite a bit of effort: fun, lively, running around and playing with my friend’s two year old while drinking a gin and tonic or drinking and dancing out at a bar after a Blues game. I’m fine, I told myself, I’m fine. But I wasn’t, and I’m not, and I’m months behind in recovery. I did a lot of crying on Mother’s Day over the complications of whether we’ll ever have kids, something that is looking far away and out of reach for a lot of health reasons (a post for another time, but that holiday is loud and obnoxious in a way I never appreciated before. We get it, everyone.). I was not handling things gracefully. 10 days before the scans I realized that I wasn’t doing what I needed, but I wasn’t really sure what to do next.
Then last week was a little more eventful than I expected: First, we didn’t hear anything the day of the CT. Usually we get a call the afternoon of the scan, but by 6 PM we accepted that there wouldn’t be news. Nico was fidgety, anxious; I was quiet and calm, turned inward. I focused on the biopsy and put the CT out of my mind, even though the CT tech had switched from warm and friendly before the scan to formal and nervous afterward, a switch I’m familiar with from previous tests.
I arrived the next morning, nervous for an unfamiliar procedure but still strangely calm. I was shepherded through the spa-like breast cancer center (it is so nice, you guys) by lovely, bilingual nurses, changed into a fuchsia gown, got the friendliest ultrasound I could ask for, and arrived in the room to sign my consent forms for the procedure.
The doctor was a man, which in a large suite filled with nothing but women surprised me. Is this very young man lost? But he was polite and walked me through what they would do: injections to numb the area, a small incision, take 4-5 samples, insert a tiny metal tag so that on future scans they’ll already know they’ve checked this particular mass out (like sharks in the ocean, except in my boobs). I knew what the procedure would entail, and probably because I have survivor friends who regularly have to get much worse things like spinal taps and have had much worse procedures myself, I’d come around to being not freaked out about it. Then he told me that they couldn’t tell from imaging whether this mass is a lymph node or not, so they need to do extra testing on the samples, and consequently we wouldn’t get results for at least a week.
This caught me completely off guard. No one mentioned this possibility at my ultrasound and mammogram in February. I immediately jumped in with questions: It might be a lymph node? Do you know I had lymphoma? He looked a little uncomfortable, possibly because he realized this was all news to me, and he said yes, that that’s one of the reasons they need to be absolutely sure it’s not. This was all five minutes before the actual procedure, which for reasons I do not and will never understand, they don’t provide ANY SEDATIVES OR RELAXANTS. Not to constantly use the trope of “if this happened to men,” but I do wonder if they would do an incision on a sensitive region on men without any relaxants. After some research I realized that standard procedure is just to numb women up and hope they don’t freak out. It is insane. After I signed the consent, I took part of an Ativan that I’d brought along, but it didn’t kick in in time for the procedure. So I was wide awake, trying to process this lymph node possibility while I laid on a table and Dougie Houser cut into my right breast. Because apparently I am unable to stop myself even in intense moments, I kept asking questions.
A woman doctor—I think she was the attending and he was the resident—was in front of me, trying to keep me chatting and distracted during the procedure while I laid propped up on my side with my right arm up, Dougie behind me, and two other female nurses assisting. I squeezed the little stress ball they gave me (if you ever get this procedure, I highly recommend the stress ball because it actually helped a lot) and breathed slow and deep as they explained what was happening. I mostly ignored them and continued with my own agenda: I don’t understand, I insisted, why can’t you tell if something is a lymph node? Isn’t science further than this? What would that mean? What would happen next? I asked these in rapid succession, as the woman doctor tried to calmly answer each one in between giving occasional instructions to everyone.
Apparently irregular (read: cancerous) lymph nodes are tricky to identify—“so does that mean it could only be irregular if it’s a node, what does that mean?” The man doctor replied this time: That why they’re taking some extra samples, so that if it is a tumor they can do all the tests they need. This was not the right response and I asked even more questions about whether this could be a tumor. Of course it could, that’s why I was getting a biopsy, but in general I don’t recommend doctors using the word “tumor” while they’re cutting into a patient. He backtracked. It could just be a cyst, we just don’t know, we’re being cautious, etc. At one point, they had to stop and give me more numbing because I started to be able to feel too much of what was happening. He explained that they were cutting at a dense area so the pressure is more intense. “So you don’t think it hurts because you’re cutting into my body?” I asked, and that time got a small laugh from him. Next he claimed that it shouldn’t hurt, and in return I pointed out that he was the only of the five people in the room without breasts. All in all, I was a delight of a patient. But at least I stayed calm and didn’t move even though I wished I was a little chemically oblivious of this situation.
Once it was over, I started to cry. I was annoyed and embarrassed because I have been through so much worse than this, but we still hadn’t gotten the results from my CT and to hear that this could also be a lymph node was an intense combination. They kept asking if I was in pain, I kept shaking my head no, and I silently took the tissues they offered as they comforted me, reminding me that it was over. Half numb, half crying, I went and got the post-procedure mammogram and the nurse was so sweet, telling me that everything would be okay. But once you’ve been told you have a tumor once, you never really believe them again. Back in the changing stall, I sat on the bench and sobbed for a bit. Here we are again, I thought. Then I got my shit together, got dressed, washed my face with cold water, felt the Ativan kick in comically just too late to be helpful, and went on my way.
A couple of hours (of drug-induced sleep) later, we arrived back at the hospital to meet with Dr. K. I tried to check in for bloodwork and my appointment, as I have dozens of times before, and they told me that I didn’t have bloodwork scheduled and would be sent straight to the doctor. This has literally never happened; it felt ominous. Immediately, I started to scenario plan: best case is still a clean scan, medium case is that there’s some swelling of the nodes and they need to do a PET tomorrow, worst is that we need to discuss treatment options, worst-worst is they need to admit me. I started to think through what was in my suitcase at home—I hadn’t packed the robe I like to travel with, which is a favorite hospital item, and I’d need to pick up some shower shoes, but I pretty much had anything else I’d need for a stay.
The weird thing about these moments is that we can’t let anyone else into them in real time. I can’t text my sister or my friends or any of our parents and say hey, something doesn’t feel right, we think we’re getting bad news. You can’t drag anyone else in, because 1. It’s needlessly selfish—telling them won’t change anything and it will only marginally help us and 2. then we’d have to update them quickly. And whether we get good or bad news, our time with Dr. K is precious and we don’t want to be distracted. If I could somehow control all of this this, I would actually prefer to receive bad news totally alone so that I can process and share with Nico later and be prepared for his response. But annoyingly there’s no box you can check that says you want good news with people there and bad news alone. So we sat in the crowded waiting room, not texting anyone, both staring straight ahead, silent. Occasionally one of us would say something like “but this could mean nothing, it could just be a clerical error” and then lapse into silence again.
Finally, we get in the room. Dr. K walks in, upbeat, cute new haircut, ready to roll. “Your scan looks good,” she says as she pulls up my chart. We both exhaled with relief, bringing ourselves back from the point of quiet panic we’d started to approach. She looked almost quizzical at our intense reaction, and I explained that because we hadn’t heard anything and they’d cancelled my blood work, we were convinced something was wrong. Oh! She said, no, the port draw is just really backed up today and they must have cancelled to make sure you still met with me on time. She didn’t even realize they’d done that and I’d need to go to another lab for bloodwork. I laughed—this was such a ridiculous, loaded coincidence.
We talked through my scan: no signs of cancer, but we can see how big the remnant of my tumor is, and it is…not small. At 8×4 centimeters, it’s quite a bit of scar tissue that isn’t going to go away. Right now, some of it is wrapped around the blood vessels at my heart. It doesn’t look like the tissue was constricting the vessels, but she wants me on baby aspirin basically until further notice to keep everything moving. On one hand, I wasn’t surprised. I could still feel things in that part of chest, occasionally sitting up gasping for breath late at night because something wasn’t pumping quite right, sometimes having some swelling or aching in that old familiar spot. I thought more of the tissue was gone and this was in my head, that there was an indiscernible amount left. To hear that I was reading these instincts about my body correctly was a weird little relief. And in the grand scheme of cancer side effects, this is low-impact. It also explained why the CT tech was quiet–seeing something that big on a scan usually means something BAD, so now I know my baseline looks much scarier than it is.
People don’t necessarily know how to respond to how fraught and stressful these days can be. Some barely acknowledged the news as it all rolled in. If you’re ever been sick, this hurtful phenomenon might sound familiar. But others were great, said lovely things, told me they were thinking of me, asked how I was doing, sent me funny pictures and generally communicated that while we’re never out of the woods, they want to be in the woods with me. I appreciated this and it fueled me through the week. But that night I was mad. I wanted this over, I wanted resolution, and I hadn’t wanted to hear that there’s still a softball sitting in my chest, that my old dresses won’t ever fit again, and as I laid in bed with an ice pack over my bandage, the week without results stretched out in front of me like an eternity.
But I slept hard that night, and was emotionally much more buoyant the next day. We will deal with what comes, and just need to put this waiting out of our minds. We switched our flights to leave a day earlier, ready to get back to New York and our usual brand of pretend normalcy. We went to our cousins’ house, spent time with them and their new, adorable and very chill baby, and got back to the apartment we stayed in for the week (thank you to our lovely hosts if you’re reading this!). I got a call from a random 312 number; it turned out it was Dr. Dougie from the day before. He told me that they didn’t need to do the full tumor testing; they had results early because the mass was completely benign. I think he enjoyed this Friday afternoon good news because he ended by telling me: “And we won’t need to see you until your mammogram at 40, everything is fine.” I just sat down on the floor where I stood and thanked him profusely before I hung up. Nico came in the room, I told him, and he sat down on the floor too. I was suddenly deeply, down to my bones exhausted. I didn’t realize how much anxiety I’d been carrying around with me, and I was happy and relieved and temporarily so paralyzed with fatigue that we waited a few minutes to tell our families.
That night, I slept ten and a half hours after weeks of insomnia and fitful sleeping. I am not a good sleeper and really never sleep that long. When I woke up, I thought about these past few months and days. I realized that ever since we left Chicago, I’d been holding my breath. Yes, the move has been hard, but I also never accepted that it was permanent. Unconsciously, in some corner of my brain, I was waiting to be told that we needed to pack up and spend another few months in treatment in Chicago. I didn’t trust remission and we’d been burned on this move before. Part self-protection, part anxiety, part fear, I’d kept myself moving; I hadn’t accepted where my body was in recovery, where we live now, or what this life might become. This wasn’t irrational—the chance that I could recur is not terribly low. But I hadn’t done the quiet, daily work of creating a new routine and taking care of myself.
Here I am: six months cancer free, incredibly lucky, and trying to face some realities I’ve been ignoring. For two years before diagnosis, I worked full time and went to school and interned at intense places while the cancer grew and slowly wore me down. I was constantly fatigued and sick but refused to let it stop me from doing what I wanted to do until I was finally too sick to continue. I have to remind myself that I’m recovering from years of illness, not just this year of treatment. It’s going to take time–something I am infinitely lucky to have more of, especially without intense daily medical interventions.
So no more pretending that I can just flip a switch and be better; I have work to do. More exercise, more writing, more yoga, healthier food (but not too healthy, I still love to eat!), earlier to bed, less travel, less social stuff, less booze. I’m going to do consulting work because I love to work and miss it (and you guys did you know New York is expensive??), spend as much time outside as possible, explore our new city but then go home and sleep as much as I can, read books now that my cognitive effects are finally starting to go away, cook all the things, and generally find a new rhythm in this new life. I’m not going to waste the gift of six months cancer-free, no matter what might come in another six months. No more holding my breath.
And now for a less depressing, more logistical update on what happens next! As I said in my last post, we head to New York next week. Our movers came yesterday, since it was somehow suddenly the last day of the month. By tomorrow we will be done with most moving-related tasks and enjoying our last weekend in Chicago. Then we’ll fly out to beautiful LaGaurdia airport with our tiny dog on Monday morning. For the month of March, we will be living in an adorable Airbnb in Brooklyn (on the border of Park Slope and Gowanus). Then we’ll look for a more permanent place to move into in April, ideally somewhere north or west of Prospect Park (and hopefully close to the park, we will be missing Chicago’s many trees pretty hard).
I guess unsurprisingly, the Google moving package is generous; we’ll be reimbursed for the temporary housing, and it even covered getting our car shipped (for someone who has had insanely scrappy moves in the past in which I asked literal strangers to park the moving van for me, this continues to be unbelievable). AND YOU GUYS SOMEONE PACKED OUR BOXES. This absolute luxury was a moving game changer, one I’m guessing we will not use when we have to pay for our own move again, but it was amazing. And particularly helpful right now, when even sorting through and organizing our belongings was a massive use of energy. The whole package has also been super helpful financially as we move to one of the most expensive cities in the country after living this single salary life for over a year (if one more person tells me New York is expensive, I will yell “and water is wet” at them—we know, you guys! It’s stressful enough!).
Today is also the one-year anniversary of my diagnosis. A year plus three days ago, Nico was offered the job that prompted this move; it was initially posted in New York, where we hoped to wind up after graduation last summer. It was also in an area of the company that he’d been trying to get into for a while. He was excited and nervous throughout the interview process, which happened about two weeks before we knew anything was wrong. The day he found out he was one of the finalists, we got the bad CT that told us this was much more serious than they hoped (even knowing it was most likely a cancer). That day, Nico told the hiring manager what little we knew, and that he understood if they wanted to go with a—we’ll say less complicated—candidate. When they offered it to him anyway, I’d been unexpectedly hospitalized for several days and was about to go into surgery to have a large lymph node removed for biopsy. It was stressful, and pobresito Nico didn’t get to celebrate this accomplishment like I would have liked, but it also felt like a hopeful vote of confidence that at some point, we would make it out there.
A beast of a year later, here we are. It’s been a big week—we went through everything we own, even the mystery boxes tucked away in our basement storage units. Over the last 10 days, I think we’ve probably cut our belongings in half in preparation for what I’m sure will be a much smaller apartment in Brooklyn. It was tiring, but also cathartic. We shed a lot of items that remind us of this past year, and I tossed a bunch of stuff I wore when I was a 23-year-old living in DC and somehow carted around through five different apartments. Why did I do that? Did I think someday I would need four too-small Ann Taylor Loft pencil skirts?
The big physical item that we’ll be letting go of is our beloved tan couch, which Nico bought with his very first paycheck after college (pretty sure I bought something stupid like three gin and tonics with my first post-grad paycheck and am always delighted by the fact that this was his first purchase). I have practically lived on it for the past 12 months, particularly the first few months of treatment when the tumor was pushing too hard on my chest and I slept sitting up almost every night. It is enormous, large enough for an adult even a couple inches taller than me to comfortably sleep on, and soft, lived in like a perfect old tee shirt. Our future closet of a home won’t accommodate its largesse, but that did not stop me from attempting to bring it. “What if we get a place and it turns out to be the perfect size for the couch? Won’t we be so sad?” I could see the concern in Nico’s eyes that I was this attached to an 11 year old, stained inanimate object, but luckily a friend told me (in no uncertain terms and accompanied by some colorful language) what he would not: that I am too attached to this thing, and it is time to let it go.
As it turns out, I’m also pretty in love with the cold, windy, big-shouldered city of Chicago, but it’s time to let it go as well. Our friends here have been incredible, loyal, fun, and helpful in this crazy year, and more than the lake or our favorite Mexican breakfast place (Esencia: highly recommend) or even my favorite couch ever, we will miss them in our everyday lives. They showed up for us again and again—they visited in the hospital, helped me with my IVF shots, checked on me when Nico went out of town, quietly did the dishes when they stopped by, created a schedule for meal drop offs, took care of our dog for months on end and at random last minute times like the past two days, took Nico out when he desperately needed to a break, made us endless cookies, sat by my bed while I cried, buoyed and entertained us with personal and political gossip, and generally made this hellish year brighter every single day.
Thank you all for making Chicago home. Throughout the past weeks I’ve had countless moments where I think we are absolutely stupid and crazy for leaving this community. Would it have been nice to recover in Chicago a bit longer? Yes. Does it feel a little insane to move to a new place 90 days after I finished pretty intense treatments? Also yes! At first I was annoyed that we needed to move a little faster than we wanted based on Nico’s contract, but now it’s kind of nice that the timing wasn’t necessarily a choice–we’re not wondering or arguing about whether we did the right thing. It’s just a thing we need to do, and I think ultimately it will be good to have a fresh start in a new place (and eventually with a new couch). Like a lot of leaving, this step is bittersweet.
But we will be back pretty regularly! Every three months, I need to get bloodwork and have my port flushed, and every six months I’ll get a contrast CT to check for any swelling in my lymph nodes or growth in the mass in my chest (it didn’t full go away but is now just a benign mass—we’ll find out in May exactly how big it still is as it’s hard to tell on a PET scan). I could completely switch my care to New York, allegedly they have hospitals there too, but in order for my results to be counted in the clinical trial I need to be here—this is important to me because if this trial is successful, it could mean a whole new option of less toxic treatment for Hodgkin’s patients. The trial also had what felt like a lot of risks, and knowing I was doing it for a larger reason was helpful for me as we chugged along.
More than all that, though, I am just not ready to leave Dr. K and her team. Up until our most recent visit, I cried any time she brought up the idea of having another oncologist because she and C, the PA we love so much, have become our touchstones of safety and if not certainty, at least a ton of knowledge. We know it’s possible that things could go wrong again, but it’s comforting to have the same team helping us through this next part.
So for a while, we’ll do the commute and get to see our friends. I will be back in May, August, and next November for various medical things, as well as a wedding (one that I am VERY excited for) in July. This means three visits when Chicago is warm and beautiful! I’ll be able to do favorite my lake walk again, which I’ve finally accepted is just not going to happen before I leave on Monday—it’s too damn cold, and I don’t think another eight years here would have changed my hatred of the cold. I know I’m not a true Chicagoan because I don’t even act proud or tough about the weather, I just hate it (and because we are moving to New York, which many Chicagoans see as high treason, and because I will forever be a St. Louisan at heart).
I think those are all the big things for now. On this anniversary, here’s hoping for a better year, but for now just a fun weekend, no snowstorms on Monday, and a Brooklyn apartment that is slightly larger than our Chicago walk-in closet.
I haven’t written in a few months, which is the longest I’ve gone since all of this began a year ago. It’s a little hard to explain why, but the short answer is that I’ve been uncomfortable with telling the truth: that in a lot of ways, this part sucks too. Everything I read and was told by survivors or friends with chronic illnesses is that the time after the most dangerous part is the hardest. But the reasons that I read about were ones I talked myself into believing wouldn’t apply so much for me: your support network moves on; you’re finally processing how traumatic being sick really was; you aren’t actually physically better or emotionally your old self.
Not me, I thought. I have an amazing support network; I was processing this experience as it happened; I would get better quickly and feel like an even better version of my old self! Nora 2.0, right? I would be doing great—but in a lot of ways, I was wrong.
Let’s start with the support network: It’s not that my support network hasn’t been amazing—I am grateful every day for the friends and family and, frankly, friends once or twice removed who have supported me this past year (the lady web is strong!). But the general approach of the world around you changes when you are supposed to be better, and I suddenly realized that everyone has been moving on for a long time. While I stayed home for the last year, everyone else’s lives continued to happen, and I’m constantly playing catch-up.
Accustomed to being a person who Gets Shit Done, in January I looked back at a year in which I accomplished nothing. Yes, I graduated and no longer have cancer, so maybe that sounds ridiculous—but I graduated because I worked toward that degree for three years, not just the 12 weeks when cancer and grad school overlapped. And I don’t have cancer anymore because I have incredible health care and I made it through treatment—it is not an accomplishment. Lots of people do not make it to the other side of treatment, and they have not failed (though sometimes our healthcare system has failed them). Nothing about it felt active on my end, it’s just something unlucky that happened to me and I was lucky enough to survive (I will now proceed to use the word “luck” 100 times in this blog post; I have no regrets).
The moments when I remember I’ve missed a whole year are constantly surprising: I didn’t realize my cousin was graduating from college, I recently told someone that Nico was a year younger than he is, and I was unable to remember what year I started grad school because I kept missing a year in the count. I’m sure you’re thinking that this happens to everyone, this isn’t specific to a recovering cancer patient. But that’s the problem—everyone wants to convince themselves that my symptoms are actually normal, this wasn’t that big of a deal, that we are all safe from illness. “So when are you going back to work?” they ask expectantly, as if this is not a loaded question. My post-grad plan of various intense social work options (domestic violence advocacy, hospital trauma work, legal aid) doesn’t really work now that talking to people is exhausting and I get lost driving in my own Chicago neighborhood. We have to move from our Chicago home to New York on March 4th, find an apartment, learn a transit system, leave the comfort of knowing Northwestern Hospital is 12 minutes away, find a ton of new health care providers. It’s gonna be a minute.
But cancer survivors aren’t supposed to say that they aren’t great! We are supposed to be comforting, inspirational. Look at such-and-such, it’s like it never happened! People are afraid of their own mortality, so they participate in what social scientists call confirmation bias–they list out the evidence that seems to prove their ideas: But it’s gotten better! This is a fact but I am sick of hearing it because it often feels deeply dismissive. You’re out of the house! I’m working hard to be here. You look great! I mean, I think I look like a stranger/my sister/not myself but seriously thank you anyway! You’re well enough to move to a new city! This wasn’t so much a choice as a reality of my husband’s job, the one that has been paying all of our bills and giving me health insurance for over a year, so off we go! You went to a wedding, you got on a plane, you rode an exercise bike. You’re still here.
And that last one, the still being here: that’s the one that I tell myself every hour of every day. Which brings me to thing-I-was-in-denial-about #2: that I was processing this all as it happened. I’ve realized that during treatment I mostly stayed focused on survival and doing what I needed to tolerate the drugs, side effects, isolation. One day at a time—no emotional energy to zoom out and see the bigger picture of my life and that this huge, bizarre thing happened to it. Obviously, I had emotions and occasionally got upset, but mostly I just put my head down and powered through. I read back through my blog recently and it sounds like I was frequently processing the emotions of this experience. Really, I just didn’t write about the many, many days when I laid on my couch and didn’t let myself think about why I was stuck there. If I actually faced all the feelings brought on by cancer while it was happening, I wouldn’t have been able to deal with the fear, isolation, panic, and grief of the life I was missing and might never get back. Now I’m learning the hard way what I used to tell patients at the trauma center: the emotions you ignore in survival mode don’t just magically disappear. They need an outlet. Now everything I tucked away is coming out in the midst of my learning how to live in the world again.
I’m writing this at 2 am after our radiator woke me up just as I’d fallen asleep. When I woke up, I realized my left arm was numb and tingling. Yes, I was sleeping on my left side and this is a thing that happens to everyone. But I’ve had multiple people in the last 6 weeks review my high risk for a heart event for the rest of my life, and it was just scary enough (and I’m just fatigued enough to fall into the fear) that I snapped awake wondering if this was It. And then I’m up for hours.
In these moments, I remind myself: but I’m still here. Writing honestly about this time feels wrong because so many people—people I know, people I care about, people I read about who become numbers in survival rates—are not still here. Who am I to complain? I had a treatable form of cancer and some of the best medical care in the country. I won the cancer lottery (still a shitty lottery) and got on a cutting-edge immunotherapy clinical trial. I love, love my oncologist. I have the financial stability to take a little more time off work while we move across the country and get settled in New York. I am just a big ball of luck and privilege.
But here’s the thing: if it sucks this much for me, it must suck a whole lot more for the people who don’t have all of these advantages. So I’m talking about it anyway, and I hope my candor isn’t mistaken for lack of awareness of my privilege, of my dumb and beautiful luck. I am acutely aware, and I vacillate between gratitude and crushing guilt basically all of the time.
Finally, the idea that I would quickly bounce back and feel like my old self—this was probably the most laughable. Over and over survivor friends told me to just let my expectations of that old self go, to see who shows up in the time after. It’s not so much that I ignored them, it’s more that I didn’t understand what change would feel like. Before I go on, I should explain that everything I’m experiencing is totally normal. I saw my oncologist last Monday for my three-month check in and I’m right on schedule. At the very best, my course has a six-month recovery, with most people falling between six months and a year, so being at or a little below 50% energy at three months is normal—and they’ve warned me repeatedly that the move will be cognitively and physically challenging so I need to expect that timeline to lengthen.
I told them how things feel: that I still need to rest for several hours each day; I calculate how much energy I think things will take and then I rest, cancel, and rearrange accordingly. These calculations include physical demands, transit, noise level, number of people, emotional exertion, etc. There have been exceptions I can count on one hand when my energy somehow miraculously lasted—a karaoke night, an amazing wedding that required only a nap between the ceremony and reception, a few loud hours out with my girlfriends. But cognitively, I get overwhelmed by multiple stimuli—if someone is trying to talk while someone else is talking (this sensitivity has made me realize how much people interrupt, it’s crazy!) or talking over loud music or a TV (sports bars are a living nightmare), if there’s a lot of bright lights or loud noise in general. At first I just can’t follow the thread of what’s happening, and then my brain kind of shuts down, everything blurs together, and I get a kind of physical ache. It is wild.
In those stronger moments, I started to believe that this was over and I somehow beat out the recovery period. I think the people around me understandably felt the same way. But then I pay for it with days of fatigue afterward, days that no one but Nico actually sees—so my outward appearance is often pretty upbeat. I seem like myself (whatever that means) because I’m working hard at it, and it turns out I’m good at appearing to be fine.
Dr. K and our beloved PA nodded, kindly and gently, then told me that this was all normal. Things will eventually improve. Except for the things that maybe won’t, that might be a lifelong difference in energy and lifelong chronic fatigue. But it will be a while before we know whether that’s happened to me, and I should put it out of my mind. Weirdly I have gotten so good at compartmentalizing that I was able to do this after a few days, quite the victory. I pointed out with a laugh that I was never warned that that could happen, which is only maybe true—I absolutely could have blocked it out. Dr. K smiled sadly and put her arms out in a not-dismissive shrug, like, “what can ya do?” It’s not like I had a choice, like I could have said nah, let’s let that tumor crush my heart because I don’t want to risk the chronic fatigue.
But honestly, if you were to hang out with me during my carefully-curated energetic times, you might not hear a ton about this. I talk about it some, depending mostly on who is asking and how they’re asking, and I make jokes about it and about the dumb shit people say to me. And I enjoy the simple parts of getting to live out in the world again. It’s surreal, and I’ve had moments of joy and wonder at big things like being near the ocean, meeting a new baby, hanging with my old roommate in a jungle-y Miami bar, or simple things like grocery shopping and making dinner without having to take a break. There are so, so many things—good and bad—to process, that each day feels different.
So here is my point: if you know or love or work with someone who is recovering from an illness or living with a long-term illness, (or someone who is grieving, I think a lot of this holds) and people talk about how great they’re doing, know that they are probably exhausted. They are probably using energy they don’t really have to push themselves to seem normal, to smile at you. They are probably doing physical therapy exercises behind their office door and silently closing their eyes for 30 seconds to give their brains a break from the constant barrage of noise from the outside world. Has the world always been this loud? They are probably ping ponging between grief and relief and joy and drudgery and back again.
Be nice to them. Demand less of them. Understand when they cancel plans. Respect that their energy is a finite resource (oh and hey, yours is too!) and they have to be incredibly careful how it is spent. You might not understand the calculus they are using, or the decisions they are making–I am super inconsistent because the variation day-to-day is so great. Believe that they are doing their best. And know that they might not tell you how they’re truly feeling. We know that it makes many healthy people uncomfortable and fearful and awkward to hear the gritty details. For me, there are huge exceptions to this: people who do want to know, who ask open, truly curious questions, who consistently say that they understand all plans are tentative, who ask me about the dumbest comment I’ve heard lately and help me mock it. Again, I’m lucky for those people.
By and large, though, I know that you see your fears in me, and I calibrate accordingly. I am most honest with survivors, friends in treatment, and caretakers of all kinds because they’ve already lived with this fear—it’s our old acquaintance. And for everyone else, thank you for continuing to read this; it means you’re trying to understand.
The short version of this post is this: I am in remission and wildly grateful and stunned about the news. To the large number of people I care about who are hearing this via social media or blog post, I am sorry—I usually try to avoid this but have been so exhausted this week that we told very few people individually. It doesn’t mean we don’t want to hear from you! Just that it was easier to explain once instead of many times. Thank you for understanding. Also! If I don’t text you back right away, it’s just because I’m tired and I will respond soon!
So here’s the recap: This week, I had a scan one day and then bloodwork and an appointment with Dr. K the following day. It was oddly comforting to be back in the cancer center after my longest period away in nine months. A few hours after my scan, I got a call from Dr. K that it looked great. Nico and I were both deeply relieved, but the completely honest truth is that we are so surprised by this news that we still haven’t quite made it to all-out happy yet. I feel grateful, comforted, and insanely, absurdly, undeservingly lucky right now, and it’s still kind of sinking in.
When Dr. K told me over the phone, I was relieved but still didn’t really believe it. We didn’t even tell anyone for a couple of hours, I think because we needed to adjust–and I needed to physically see the scan and hear it from her in person. What if she just didn’t want me to be nervous but was actually going to present me with further treatment options in our appointment? There is absolutely zero percent chance that she would ever do that to a patient. She’s a straight shooter and wants patients to have all the information they need, but I still needed more information. The self-protective instincts I grew this past year run deep, apparently.
In the appointment the next day, I kept saying, “really? all of it?” until she pulled up my first and most recent scans. In the first, you basically couldn’t see my heart and lungs because they were cloaked in cancer cells (in addition to the nodes on my neck and underarms). Now there is still some “fullness” (Dr. K’s word) around my heart, which sort of looks like swelling on the scan but is just scar tissue hanging out because the mass is not completely gone—nothing else. The difference is remarkable.
According to other survivor (!!) friends and my therapist, this is all totally normal. “Everyone is excited but the survivor at first,” one told me, which was helpful to know because I mostly felt like a crazy person for not being shout-it-from-the-rooftops thrilled immediately. We were so braced for bad news; I’d been itchy and had chest pains for days leading up to the scans, which were both presenting symptoms before I was diagnosed, which made it hard to feel like we were actually going to get a good result.
Next week, Nico and I fly out to Miami for five days of sun at a condo on the beach (thanks to Nico’s cousins who will be letting us stay there!). I think leaving Chicago and more specifically our apartment will help this all feel more real—I’ve become both weirdly attached to and resentful of it while I’ve spent almost every single day here for the past nine months. Hopefully the change of scenery will help shock my brain into believing that for now (and maybe forever?) treatment is done.
Reading back through, this post doesn’t sound super happy, but I am of course happy and excited for what comes next. I’ve loved the responses from the few people we’ve told, so would love to hear from anyone who’d like to reach out, and YAY is a lovely thing to hear—just because my brain’s hasn’t totally caught up yet doesn’t mean we aren’t happy and aren’t glad that other people are happy too.
Hearing from people I care about has gotten me through this past year. To everyone who has checked in, asked how I’m doing, found ways to be empathetic and in solidarity with this experience, let me feel how I feel, and in general found unexpected, loving ways to show up for me and my family, thank you. This year taught me a lot about how people show care and love, and while I’m not sure I can say I wouldn’t trade that for anything—because boy was this the long way round—I appreciate it all the same.
To everyone who is currently in treatment or has lost someone to cancer, is in remission and still living with the fear of recurrence, or is caring for or has cared for someone you love, please know that I think of you all the time. With you is where my brain feels most comfortable, because you understand the complexities of this past year and how changed we are because of it.
Finally, because several people have asked, yes I’m going to keep blogging for a bit. I’ll do another post about what actually happens after this medically, and probably my adventures in trying to be a normal 31-year-old again, but right now I just wanted to share this big little chunk of news.
Today is my final chemo day!! I’m feeling good—upbeat, ready, and although not terribly strong because I’m pretty fatigued these days, I’d say strong enough considering I’m on month 9 of treatment! Reflecting on the last nine months before this infusion is safely behind us feels like bad luck, so I’m once again not doing that today. This is a two-part post. First, a quick overview of what comes next in terms of appointments, followed by a long explanation about what actually happens on a chemo day—in talking with newly diagnosed people about how things go, I realized it would be helpful to write this all down while it’s still happening so I don’t forget the little stuff that might be helpful. So if you’re not into details, skip the second half! If you’re like me and love some minutiae, enjoy. For those who find medical stuff icky, there’s not really anything too icky in here.
Next up after chemo: on November 12, I’ll get blood work to see if my white blood cell count has bounced back up to a level safe enough to be out in the world and to get our dog back. I could’ve waited 4 weeks post infusion until we’re more sure they’ll be up, but I wanted to check in at 3 weeks because I miss Fanny and have been in this apartment for almost a solid 9 months. See previous post on being Over It.
Then at about 6 weeks from today, the week after Thanksgiving, I’ll get a PET scan/CT/blood work, which is when we’ll find out if I’m truly in remission. Ideally we’ll hear that I’m NED—no evidence of disease. Luckily I’ll be happy and distracted by the holiday and being allowed out in the world (and being allowed to eat soft cheese again) so I won’t have tons of time to feel anxious about the scan (right? right.). And then if all goes well, I won’t get another scan for another 6 months! We are moving to New York for Nico’s job in late February, so I’ll get an oncologist there but come back to Northwestern for 6-month scans probably for the next two years. This is so that my results are included in the clinical trial, which is important to me because Science, and also because really I only trust Dr. K and am not at all looking forward to getting a new oncologist. I know I have to, and apparently NY is a hub of lymphoma research and I’m lucky, but right now I’m not thrilled with the whole new medical team concept. I’ll warm up to it. So that’s the plan once we get through today and the next two weeks of chemo going through my bod!
Back to today—here’s what happens on a chemo day for me: My appointments usually start between 12-1, so I don’t have to get up early. Usually I get up, eat breakfast, wander around aimlessly for a while, always start getting dressed and packing to go a little later than I mean to (for example it’s 11:30 right now and I’m still in pajamas). Even now when I’m pretty used to this routine, it’s hard not to be a little anxious about the whole thing. So we often (with a couple of victorious exceptions) wind up running out of the house a little bit late despite theoretically having plenty of time. Big fun.
Clothes: I always wear a baseball cap, partly because my hair looks gross but mostly because my head is cold and the hours under fluorescent lights can give me a headache. My port is in the right side of my chest, about parallel to the top of shoulder. Like an early aughts college freshman picking a Going-Out Top in January, the trick for clothes is wearing something that is somehow both warm (the hospital, like all hospitals, is always always cold and doubly so because of the no-hair thing) and low cut. I’ve worn low v-neck tee shirts, button downs, tank tops with sweaters or zip-up hoodies, and then a denim jacket layered over it to most treatments. I personally subscribe to a “look better feel better” view on life (adopted from a few of my good girl friends and my entire stylish family of in-laws) so I like to look kind of nice at treatments. Not super dressed up, but also not sloppy. This doesn’t mean that’s what works for everyone or I think people should dress up for chemo, just that it makes me feel a little bit better. I usually wore leggings or occasionally stretchy jeans because it’s a long day, and wearing uncomfortable pants when you’re going to be low-level anxious for 6 hours is no good.
What I pack: I have a tote with a big bottle of water and usually a gatorade, snacks (see below for full food info), little bags (Glossier bags are a favorite because you can easily Clorox wipe them off later) filled with lip balm (this is not a Glossier ad but balmdotcom is my hands down favorite), usually 2 kinds of various colored lipsticks even though they come off on my mask, a scent roller thing of lavender essential oil, and a botanical spray my sister-in-law got me that all help combat the hospital smell and my nausea. I highly recommend bringing some soothing scents because it can help give your brain a little break from all the medical smells. I also pack a fully charged laptop, my kindle, my wireless headphones, a phone charger, an extra layer of clothing, lotion, lavender-scented hand sanitizer. Hospitals are disgusting so I tend to use a canvas bag so it can be washed, and I literally wipe down everything when I get home because I am insane about not getting MRSA.
Food: One of my close friend’s younger sisters once remarked that my greatest fear is hunger (she saw me packing myself an extra sandwich to take on a wedding-day bus, a decision I defend and recommend to others), and she is not wrong. So figuring out food has been tricky and important. Ideally, I try to eat two meals before we get there—once I smell the interior of the hospital I get a little bit nauseous, not enough that I’ve ever gotten sick (I don’t think? It’s been a long 9 months, who knows) but enough that food is unappetizing.
I learned the hard way that whatever I eat right before chemo creates a taste aversion, so I have to balance eating something that is appetizing enough that I’d want it but not so beloved that it would be sad to have it ruined. Finally found that balance around month 4, with oatmeal first thing—usually with walnuts, some kind of fruit, honey, cinnamon, and some almond butter for fat. Why almond butter? Because for the first few rounds of chemo the only thing that sounded good at infusions themselves was crackers and peanut butter, and peanut butter is (hopefully only temporarily) a ruined food for me. It was previously a top favorite food that I ate with everything, so this was pretty depressing. I would say try to resist a bit if you’re craving something you love..but also sometimes you just gotta eat and figure it out later!
Oatmeal has always only kept me full for about an hour (I realize this is not how most people feel; I eat a lot), which turns out to be perfect because as we’re leaving I start to get hungry again. For this, we stop at the Dunkin Donuts around the corner for an egg and cheese sandwich on a bagel because A. They’re filling B. They bear no resemblance to a real bagel so those won’t be ruined and really, if I never had another one of these it would not impact my food-is-joy lifestyle at all C. They are appetizing enough (because egg and cheese and carbs) for me to eat most of one. This combo of early oatmeal and late morning egg and cheese turned out to be the sustenance sweet spot.
I always, always forget this until the last minute, but before I leave the house I put numbing cream on my port and cover it with plastic wrap—this allows you to put a huge glop on without getting it all over your clothes and it gives it about 30 minutes to get nice and numb. In the car, I eat my sandwich and usually listen to Hamilton or Chance the Rapper (Sunday Candy and Blessings are favorites).
Each chemo day includes 3 separate appointment times: a port draw, an appointment with my doctor (I don’t know if this is the case for everyone or if I see her more because I’m on a clinical trial), and then the actual chemo.
The port draw is blood work; they test everyone’s blood before they get chemo to check the white blood cell count (though for me that is practically just for fun because even when they’re critically low they have to just give me chemo anyway), kidney and liver functioning, vitamins, protein, etc etc. Basically 20 different reads to make sure your body is functioning properly before they pump you up with toxic stuff. I’ve become kind of fascinated with reading CBC results.
For a lot of patients, accessing the port is a painful, fraught experience because it’s such a signal to your body that we’re here to get pumped up with poison again. I really only got worked up about it at my second chemo infusion, when I cried a bunch and my favorite port draw nurse started recommending support groups for me (for those with cancer: I wish I had joined a group, I think it would have been really helpful, but I didn’t). After I got past that initial I-can’t-believe-I’m-doing-chemo-at-31 phase, I really don’t mind it and think it’s kind of amazing to watch blood come out and things go in often without really feeling anything. It helps that all of the nurses who access ports at Northwestern are incredibly friendly—I’ve never had anyone who isn’t more or less delightful. This process is extremely sanitary—they wash the port for 15 seconds with a little scrubber, then unwrap a new kit that has brand new gloves already folded for them to just slide their hands in right before they access. Since the port goes through a vein and directly to my heart, they have to be very careful about bacteria and the nurse and I both wear masks during this process so we don’t even breathe on it.
Here’s an illustration of how they access the port:
Once they have the needle in, those yellow butterfly-type clamps come down and hold it in place because it stays in for the rest of the day. Then they put a large, clear bandage thing (Tagaderm) across it—there are two kinds, and I use the sensitive skin kind and they have to use a skin prep swab first because even that I’m a little bit allergic to. If I forget to tell them, it takes a nurse scrubbing the bandage off with an alcohol swab because my skin painfully holds onto it to get it off, and it looks so inflamed that even the chemo nurses are concerned by it. I also ask them to tape up the tube that hangs off because sometimes if it’s dangling it pulls a bit.
After the port draw, it’s back to the waiting room for about 30 minutes until it’s time to see my doctor and her physician’s assistant. For people going through chemo—write your questions down throughout the week (you will absolutely not remember because chemo brain is real) and always bring something to write with on doctor’s visits and ask someone to take notes! Usually Nico, a mom, or a friend did this on their laptop or phone. You don’t want to forget anything and you want to be able to use your doctor’s time to ask everything you need without the distraction of writing. Occasionally I see just the doctor or the PA, but usually I get to see both of them. If you’ve been following the blog, you’ll know that I love them—they’re both super smart, attentive women and I love their all-female team (including their head nurses). Dr. K asks about my symptoms over the past two weeks, does a physical exam, and answers any random questions that I’ve come up with since I last saw her. In the beginning, these appointments took a while—and she never ever rushed us through, constantly asking “What else?” to make sure we got all the information we needed. Oh and before I see my doctor, I get my vitals taken. It’s always a dice roll whether the machines will work for me, so sometimes I have to do the blood pressure one a couple of times before it takes.
For the first few chemo cycles, there’s a lot of trial and error figuring out drugs to alleviate side effects. Occasionally their team pharmacist would also join to troubleshoot and make suggestions. I went from two pills a day to between 6-8 by the end, ranging from antivirals to acid reducing pills to sleep aids to allergy pills (for some reason allergy pills help block some of the inflammatory effects of one of the chemo drugs). We got them figured out after a cycle or two, and then needed to figure them out again in the final few rounds when the cumulative effects hit. At first I generally wanted to take as few drugs as possible and didn’t even try new drugs unless I absolutely had to, but I learned (with encouragement from doctor and nurse friends as well as cancer survivors) to trust the drugs more and at least give them a try. Some things I took less often because their side effects weren’t worth their alleviating effects, like the nerve pain drugs that made me a little manic, but at least I had more information to make those decisions instead of randomly choosing to take less drugs. Right now there is a big “wellness” trend going on that makes a lot of generalizations—people seem to think wellness means less drugs, more buying things, and more dieting? While I think there is an American over reliance on things like prescription painkillers, I learned that making these broad generalizations does not help when it comes to long term illness, and to take it one day, one pill, and one side effect at a time. Cancer patients: random people with little or no medical will have a lot of opinions about this shit. For the most part, ignore them. Do your own research from credible sources (like peer-reviewed journals and posts on websites of major cancer centers—the Canadian and UK ones are great, as is the MD Anderson website), talk to your doctor and pharmacist, and do what works for you.
Lately, these appointments are pretty quick because we’re more in the habit of what my body does in response to chemo. After we talk, it’s back out to the waiting room for between 30-60 minutes, depending on how busy the clinic is that day. At this point, whoever is at chemo with me usually goes and finds something to eat—I’m sometimes a little hungry because it’s been a while since I’ve eaten, but only really snack until we’re all done.
Finally I get called in for the actual infusion. They take us to the room, which at Northwestern can be a single, double, or triple. The singles are a little room with a bed, rather than a big recliner, and are definitely our favorites because we can watch movies during the infusion. There’s wifi good enough to stream, but we sometimes download them ahead of time if we’re really on our game. The shared rooms have the nice recliners and beautiful views, so either way it’s fine. Only once in the 15 infusion visits did I have a bad roommate (loud family arguing over plan of care in a really mean, obnoxious way—and I understand that this is all hard and fights happen, but go in the hallway? They were also talking about the patient like she wasn’t there, which I hate). Luckily they were getting quick chemo and weren’t there very long.
I get my heated blankets (the best part of chemo), take off my shoes, and settle in with the hospital snacks of pretzels and ginger ale. Then they give me the “pre-drugs,” which consists of Ativan (always first, even if it means waiting around because there are complicated sign-off processes for all drugs), three different nausea drugs including one or two (honestly at this point who knows) with a steroid in it. The nausea meds plus steroids help create a three-day effect for the drugs, which is when the worst of the nausea is caused by the chemo. These have some side effects but for me were 100% worth it and worked very well. I can usually feel some nausea the night that they wear off and occasionally the nausea would break through these, but most of the time this kept it at bay or just to some manageable queasiness that is not unlike being hungover (not that I know what being hungover feels like, mom, I’ve just seen it in the movies). Pre-drugs technically take 30 minutes but sometimes more like 45 if they’re busy or if a drug hasn’t come through. There’s a lot of waiting, which I’ve gotten very relaxed about—being antsy doesn’t make it go faster. The Ativan is also given intravenously so even my very low dose hits pretty hard and I’m basically drunk for the rest of the time. If I’ve ever ignored a text on a chemo day, it’s probably because I read it and forgot about it. Sometimes I’ll remember things later, sometimes not! It’s a fun game.
After that we finally get to the chemo drugs themselves, which also takes sign-off with a second nurse listening for me to give my name and date of birth (which happens so often that I’d probably instinctively give this out if someone on the street asked me for it). I get Adriamycin/Doxorubicin (nicknamed in cancer world as Doxy or the red devil) first, which comes in a giant, scary looking syringe of bright reddish/pink stuff and has to be pushed into the port by hand. Different nurses have different Doxy strategies—it’s an intense drug and if they’ve used it a lot and are more comfortable, they push it quick. Others have literally told me that they “respect the Doxy” and do it slow. Either way, they frequently stop and reverse the direction of the port flow to make sure my blood is still coming back out, called checking blood return. This helps them determine that it’s not leaking outside of my vein causing toxicity, which Doxy has the highest risk of for my regimen. For me, it feels a little sting-y/bubbly going in, which was tough at the beginning because if it burns, you might have toxicity, so I was constantly asking how MUCH it would burn, etc. Luckily I often have kind of a tough broad of a nurse who has used tons of Doxy and was very matter-of-fact that we would know and my body would be freaking out if it was leaking. She also introduced me to Ativan so we are forever friends. Doxy has been my harshest drug, causing a lot of port pain outside of the hospital, contributed to my nerve pain, etc. It’s a real bitch. Watching light, funny movies has been really helpful—Sing, the Lohan version of the Parent Trap (my nurse that day was a big fan so that was fun), stuff like that.
Next up is vinblastine, which is administered for thirty minutes through the little chemo machine but needs to be monitored by a nurse throughout. I have no idea why and have never asked because honestly the answer is probably in case of toxicity/something just as or more scary? I intentionally don’t ask questions much more than I thought I would as a usually tell-me-all-the-things kind of person. When all the answers are scary, I’ve found it easier not to ask if it’s about a thing I have to do either way, rather than something I need to make a decision about. Around this time, I get really hungry (probably aided by the steroids) and start claiming that when we get home I want heavy, flavorful food like Indian, Thai, etc, none of which I’ll ever actually want at the end. But this craving happens every time like clockwork.
Finally I get dacarbazine, which takes an hour through the chemo machine unmonitored. It’s my least harsh drug, but because of how inflamed my chest has been and how long I’ve had toxins pumping through my chest by this point, it starts to hurt quite a bit. It happens every time, it’s normal, but it took some getting used to—at the beginning, it felt like it was hard to breathe during this, but a combination of Ativan and adapting to how things feel has lessened the constricted feeling quite a bit. Sometimes we stop and give my chest a break and I catch my breath for a little while, other times it’s manageable enough that we keep going. If we’re in a single room, we’re toward the end of a movie at this point and I always have a little jolt of excitement that it’s almost over and we have on more down. The pain has subsided by the end (mostly and most of the time) and I’m exhausted, but feeling okay because I’m still kind of drugged. They take the port out and slowly peel off the Tagaderm, I make a lot of noises but it’s usually fine, and I’ll sit for a little bit just to make sure I feel good enough to leave. Sometimes I get a lot of redness and a little swelling and I want to double check with the nurses that everything’s okay—basically I need a little reassurance that despite how weird my body feels, I’m okay. Eventually, we head out!
This all usually ends between 5 and 6, just in time to get stuck in traffic on Lakeshore Drive, but even that means we get the beautiful lake views for a bit and we’re incredibly lucky to live close to the hospital. It can take between 12-45 minutes to get door to door, and usually post-chemo averages about 30. By the time we get home, I’m counting the minutes until I can shower (need to wait at least 30 because the needle poke needs time to close up and my body does stuff so slowly these days), I put on clean pajamas, we put sheets on the couch so I have a clean little couch bed, and I eat some plain noodles while we watch something like Parks and Rec that I’ve seen 100 times and don’t need to pay attention to. Then, exhausted, I can hopefully sleep in bed if my chest feels good enough but sometimes I sleep sitting up on the couch. I lay down to go to sleep, and almost always can’t because of the steroids. Sometimes I just wait it out for a few hours until I finally fall asleep past midnight, and sometimes I take medicine to help me fall asleep because I just desperately want to rest.
And that’s chemo! Sometimes there have been bad days that have led to ER visits or whatever, but this is an average, best case scenario type chemo day. Thanks for reading, and thanks for all of the encouraging messages you have all sent this weekend and today!! It is incredibly helpful and I appreciate everything. And now I’m off to do all of the things I just listed!
I haven’t written in a while, partially because every time I get halfway through a post, things (or how I feel about things) change, and I reread the post and am totally exhausted by the idea of rewriting it. And posting something that no longer rings true seems weird—particularly if I say I’m feeling good, I’d get texts from my loyally reading friends celebrating feeling good and have to reply “no no actually today I feel like total garbage but not posting felt like a waste,” so my Notes app on my laptop and phone just kept filling up with two paragraph-long updates. So here’s a recap! First, to situate where we are in treatment: Monday, October 22nd, will be my final chemo infusion. I started treatment in March with three immunotherapy infusions over nine weeks, followed by about six months of chemo (12 infusions each two weeks apart, two infusions per round, six rounds total). The clinical trial I’m in generally calls for between four and six rounds of chemo, and I’m special and got the larger end of that range. But I do not need to do radiation, so as long as this sticks and I don’t recur before my six-week PET scan, I’m completely done after this upcoming infusion. More on being almost done in a later post, though (maybe? I have cancer and am extremely unreliable so I don’t know why I’m making random post commitments. 50/50 chance?). This is more of a recap of the last week or so.
Right now, I’m feeling pretty okay, partially because Nico and I are back at the magical Michigan house for a few days. I desperately needed a break from our apartment, and we are getting our fill of this quiet, beautiful place—and pie—before we head back tonight for the final push.
About two weeks ago, I felt stronger than I had in a while: I ate almost what I wanted without major consequences, I slept well, my energy was up, and suddenly I could see the end of treatment ahead of me. I thought, two more infusions?? I can totally handle that! That one was no biggie compared to the last few, and I thought maybe my body just learned how to handle chemo after all these months. Obviously I knew that that’s not how chemo works, that every infusion is different, it’s cumulative, you can only adapt to it so much, etc etc science. But for a few days, I thought it wouldn’t be so bad for the last six weeks. I started planning post-chemo life, full of exciting things like leaving my house and going out to dinner in public places (bold moves!).
And then the morning of my second-to-last infusion rolled around (last Monday), and my body rebelled. On Sunday my gums were swollen, which is sometimes an indicator that my body is fighting a bug—but also seems to happen a little bit the day before every infusion so I didn’t worry too much about it. A friend of mine is a periodontist (super trained dentist who specializes in gums), and when I asked him about it (you’d be surprised how useful it is to have a personal periodontal consultant during chemo), he said that stress can cause inflammation and it’s possible that the reaction had to do with my knowing chemo is coming. Lots of chemo patients get anticipatory nausea, where their body freaks out before they get chemo from the stress of knowing how bad they’ll feel later. But despite being a naturally anxious person, I hadn’t had many anticipatory symptoms for the last few rounds, just light nausea when I smell the hospital.
Nico had to travel for work Monday-Thursday, which was hard on a chemo week but a rare time when he absolutely had to go. When I got diagnosed, he also got a new job within Google centered around building a brand new training program. It launched in New York (where we are supposed to be living right now for said job) last week, and the timing happened to fall around an infusion–and my best friend also had to travel for work that week. Such is life. And really, such is our life this year. We’re so used to things being annoyingly timed that we are no longer surprised when it happens. I woke up a little while after he left and didn’t feel great, but decided to wait until I knew he was through security to let him know. E, my roommate from when I lived in DC, was visiting with her husband, A, to help out while Nico was gone (because once again, I have the best friends), and I texted both of them that I wasn’t feeling great and asked if they could come over earlier than we’d talked about the day before. They got there fast, and by the time they did I’d thrown up twice and realized I was running a low grade fever— in the high 99s, not quite at the 100.5 threshold of a neutropenic (low white blood cell) fever. One of the interesting things about having cancer has been seeing how my friends deal with intense situations, and in this case E&A were awesome.
We have a mouse in our house, which had kept me up some the night before—I couldn’t sleep in general, which is normal for my chemo regimen, so I went out to the couch to read. Then I saw that bold little jerk run out from under our couch. WHAT IS HE EVEN DOING IN OUR LIVING ROOM?? I’d jumped up on the couch and then dashed into our bedroom, accidentally/on purpose waking up Nico in the process. He walked out to the bathroom and there was the mouse, just hanging out next to the couch. Eventually Mickey thought to be afraid and retreated, but mostly he seems unbothered by our presence. I relayed this to E&A, and A immediately went on a mission to check under the couch (which I didn’t even want to go near) and plug up any possible mouse holes. He went off to the hardware store, moved furniture around, searched our radiators for holes the management company missed, the full treatment. E made oatmeal, nudged me to eat and drink more water and a full Gatorade, made sure I messaged the medical team about my symptoms, and just stayed preternaturally calm about the whole thing.
They both acted like all of this was normal, like we always deal with cancer and rodents on Monday mornings, and that helped a ton. I was freaked out not about being sick, but about whether this would impact treatment. I worried that they would delay me by a week and started to do the math of when I’d be finished with treatment if they did—what would that mean for Thanksgiving? How long would they delay? Nine (time of my diagnosis) or even six (start of chemo) months ago, I would have pushed back on receiving chemo with a fever. I would have worried if my body could handle it, created scenarios in my head in which I become a clickbait story “YOUNG WOMAN SUDDENLY DIES CLICK HERE TO LEARN THE SHOCKING REASON WHY,” and asked my doctor 100 questions about whether I’d be okay. Instead I went in ready to make the case for getting chemo that day—I could handle it, my body would beat back whatever was happening, and if not they’d pump me up with antibiotics and antivirals and we’d hope for the best. But I didn’t need my arguments. Dr. K was in favor of going full steam ahead, appropriately attentive but not overly concerned about the fever. Her confidence calmed me, as it always does, and we moved forward with scheduling various post-chemo appointments. This is going to end, I told myself. I have the follow-up appointments to prove it.
And then the rest of the week was rough. My aunt flew in to take over when E&A headed out, and she pretty much beasted through the week. She is deeply terrified of mice but after our bold ass friend appeared again, she got more traps and continued the mouse-catching mission. Real love is braving your lifelong fears, I think? She also did all of our laundry, cleaned our house, cooked, and ran errands. I slept a lot, icing the swelling on my jaw from a mouth sore, another indicator that my body was fighting a virus. Daytime sleeping happens in kind of a haze, where sometimes I really want to get up but I can’t quite push myself to be fully conscious—a little like waking up from being sedated. My uncle is an amazing haiku writer (this is a weird sentence but it’s true, he has a gift!) and one that he wrote cracked me open a little and I cried, sick of not being able to do anything. My aunt headed this meltdown off with ice cream (which is also what that particular uncle would want, we share this coping mechanism), and watched To All the Boys I’ve Loved Before (I’m no longer disclosing my number of rewatches) and I had a decent evening for a while.
Then my old nemesis, nerve pain, set in and I spent the evening managing that with a foam roller and hot water bottle, trying to get comfortable enough to sleep. This always happens a few days after chemo because it takes some time for the Vinblastine, a nasty drug, to really hit my nerves—and even though it happens each time, it always seems to catch me off guard because it’s right as the worst of the fatigue starts to wane. What didn’t catch me off guard was Nico’s Thursday afternoon flight getting delayed and then cancelled. All week I’d had a feeling he wouldn’t make it home until Friday, and like I said before, we’re just kind of used to things shaking out that way lately!
After my aunt left the next day, Nico’s flight was again delayed and it was just me (and the mouse) at the house. I don’t mind being alone these days because any interaction takes a lot of effort, but I realized I was again too fatigued to get out of bed. I didn’t need anything, I was fine, but I had another little meltdown that escalated into kind of a big meltdown.
I’m just over this season of my life. I’m over being too tired to do everyday things like get out of bed. The nerve pain often hits in the backs of my calves, so I have to monitor for any swelling, redness, or heat in case of blood clots. I’m tired of looking at my calves, which I’ve wished were thinner since I was 16, and seeing them actually be thinner. I’ve kept my weight up in general and don’t look super sick overall, but my calves are the biggest physical change. The left one is thinner than the right, missing more fat and muscle for whatever reason, and my tibias are weirdly sharp—they protrude down the front of my legs when I move at certain angles. These are not the sexy, thin legs I always wanted. These are the legs of someone who doesn’t go many places or do many things, and I’d like my strong, athletic legs back. I’m tired of the fear that all of the monitoring—my legs, my temperature, my gums, my water intake, my port, my chest pain—comes with, that I feel just on the ledge of safe but never quite safe enough to relax. I’m tired of wondering if I could die if something goes wrong.
And then I feel guilty for being tired. Lots of people don’t get the chance to be tired of their treatment and see the end of it, lots of people don’t get to survive cancer or eventually live a life in remission. On Friday, too tearful and tired to get out of bed, I called a good friend and mentor and told her all of this; she suggested that today, maybe I give myself a break. Maybe I just let myself be tired of this. Maybe I don’t push myself to feel positive and all the stuff that I do to keep smiling and getting out of bed. Maybe today I just stay in bed and be angry and sad and done with the constant changes the toxins bring to my body each day. “You’re still afraid you’re going to die,” she said, “that’s not something everyone deals with everyday the way you do. You’re lifting something very heavy.”
So I stopped lifting the heavy thing, just for a little while. I cried and was angry and sad. And it turned out that I didn’t need to do that for very long until the worst of it started to pass. Eventually I got out of bed, took a long shower, and did 10 minutes on my little stationary bike to get my blood flowing. Then I opened some days-old boxes from a burst of forward-looking online shopping during my good period the week before (almost of all it’s going back, but whatever), and I watched most of a season of Younger, embracing the light escapism of fluffy TV. When I finally stopped lifting, and stopped trying to feel positive or brave or grateful, I found relief.