But You Look Great…

Happy Monday everyone! I have a much more upbeat update today than the past few. We are finally getting my surge in chest pains under control—at chemo on Monday, my doctor explained that after reviewing the many tests from my ER visit they think my chest pains are all from chemo-induced inflammation. Basically, my gut lining is inflamed from the chemo drugs and can’t heal as long as we keep smacking it with more toxic sludge. It will take probably a month or so following chemo to heal (also the amount of time it will take for my white blood cell counts to go back up, so November was always a sort of in-treatment month anyway) but in the meantime we are treating it with a combination of more drugs and a new diet plan. The team’s dietician met with me during my infusion—unfortunately she arrived after I’d been given Ativan, so my side of the conversation was a little more unfiltered than was ideal. I was very focused on not being allowed to eat pizza and acted as if as if the dietician was standing in my home throwing away my food rather than giving me a list and some helpful guidance that I could follow or not. But she knew I was drugged and I think she thought it was a little funny, which it was. At first I was disappointed about having even more restrictions in my already very restricted life/anything that takes away from the little joys of things like eating pizza, but after about five days on the new regimen (very low fat, very low acid) I was feeling so much better that I got over it pretty quickly. Now I’m thinking of it as an intentional, semi-vegan cleanse for a few months rather than another annoying thing cancer has inflicted on our lives. People do cleanses for fun! I’m not actually one of them and usually think they’re an unhealthy shock to your system that is unsustainable, but it’s fine for now. The difference in the chest inflammation is pretty remarkable (though this isn’t all diet, I am taking a lot of meds); for the last 6 weeks or so, I haven’t been able to walk more than about half a block without stopping to catch my breath, and pretty much any level of physical activity was too much. Yesterday, my sister and I took my longest walk since earlier in July, with just a couple of breaks. It’s possible that the chemo will make things worse again because we can only influence it so much, but every day that feels even a little better is a huge relief. It helps that one of my cousins is on a similar diet and has been delivering us portions of whatever he makes for the week—it has meant at least double the amount of food I can eat being around our house and has also made a major difference in our day-to-day lives. Today it was quiche, kale, and roasted vegetables, which was extra exciting because our oven is broken so we can’t bake or roast anything…because of course! Between my sister and cousin, though, we have tons of food.

Nico also got a much-needed break with back-to-back visits from my in-laws and my sister. If you are one of the people casually following this rather than a close friend, I should clarify that I love my in-laws, because lots of people look a little horrified when I say my in-laws visited for a week since that would be really stressful for most people. It’s not like that don’t worry! They are the best, and they did tons of errands, cooking, laundry, and helped us celebrate Nico’s birthday.

One of the best pieces of advice I’ve gotten is CELEBRATE EVERYTHING (caps included), so we made sure to follow that. His actual birthday was two days post-chemo, so the weekend before, they went to the White Sox game and then we all went to dinner, and asked a chef friend to make the reservation and explain that we’d have some special requests for my health stuff (which he did because he’s also the best). If you have any dietary restrictions in Chicago, I highly highly recommend Girl and the Goat (and I assume the other restaurants in their group). The servers knew every single ingredient in the dishes, and whether they were pasteurized, cooked through, included mold-ripened ingredients, etc, and were quick to make suggestions for how to alter dishes so I could eat them. Usually going out to eat is pretty stressful between the germs of other customers, not being sure what’s in the food, and worrying about cleanliness, but this was all around pretty amazing. On Nico’s actual birthday, they had martinis, fried chicken, and chocolate cake (also my favorite foods, which I abstained from and felt like a SAINT and I hated it but it’s fine) and we watched the Office. I can also recommend this lineup for all birthdays.

We’ve gotten to do some other fun stuff these past few weeks as well, so here’s a catch-up recap (which excludes visits with several close friends because I never ever remember to take photos, but yay for friend visits!):

Two weeks ago, we finally had a visit with our dog, Fanny. She’s been living an amazing life of luxury in what we call “the fluffy place,” with our friends T&M; they live in a high rise building downtown with carpets (Fan’s favorite thing, her tiny paws slide on our hardwood floors and it’s pathetic), and lots of faux fur pillows and blankets. M has somehow convinced Fanny to be a dog that goes on long walks, and she keeps her bathed and fluffy much better than we did, so her quality of life is higher than any human and we’re so grateful that our friends love her so much! But we also miss her like crazy, and I had started to irrationally worry that she’d forget who I am, so we ordered a bunch of different muzzles to try out on her and prevent her from licking me—the main germ concern since she’s not much of a scratcher—and visited about a day after I left the ER. She looks like Bain from Batman, which is kind of sad and hilarious, but she was delightful and definitely has NOT forgotten who I am. I thought she would be kind of wound up and demanding of attention, but instead she very quiet and very intense with me. She basically ignored Nico, who is often her favorite but who she’s also seen a few times since I started chemo, and just laid silently on me, with her body stretched out on my chest so as much of her as possible was touching me. It was pretty much the most adorable thing ever. Even after I’d been there for a while, I got up to get something in the kitchen and she continued to ignore Nico sitting on the couch, and sat on the edge waiting for me to come back (photo below). For those of you who have heard me complain that she loves Nico more even though I spend more energy caring for her, you’ll know that this was the most gratifying evidence that deep down, I am her favorite. Thanks, Cancer, for providing this high-risk, high-reward experiment on our dog’s love for me.

Next, two lovely things from coworkers of Nico’s. First, I got a shoutout on my favorite food blog from the brilliant, funny writer and podcaster Kara Brown. One of Nico’s coworkers mentioned in a meeting that her sister has a pasta blog, and Nico immediately asked if it was Fancy Pasta Bitch, and after some frantic texting from me along the lines of IS HER SISTER KARA BROWN SHE IS AMAZING AND I LOVE HER the message that I’d purchased a pasta maker and found some fun during treatment thanks to her was passed on. A few weeks later, her post included a delightful get well message to Nora in Chicago and I literally read it and said out loud “ahh that’s me!” AND her post was making Marcella Hazan’s pesto, which I’ve made at least four times this summer. I felt like we were true pasta soul twins and it just made my day. On my first solo/not feeling terrible morning today, I made myself my low fat low acid breakfast and caught up on episodes of Keep It! featuring Kara, and I can also tell you that the last few weeks of episodes are great and you should listen. One episode features Jenny Han, the author of To All The Boys I’ve Loved Before, my current favorite rom com and another highly recommended watch on Netflix. So far I’ve watched it three times and it just gets better with every watch.

A few days after my Kara Brown love increased, another one of Nico’s coworkers offered to arrange a visit to the new Glossier pop-up in Chicago before they open for the day and get too crowded for me to go in. This was totally unprompted, she’s just super considerate and came up with the idea and made it happen. And it was so fun! I brought a couple of friends, bought a pink bag of goodies, and took some photos around their beautiful space. It was a delight and I love my husband’s kind coworkers. Another one sends me funny and sweet cards almost every single week and another makes these incredible chocolate peanut butter cookies (that I’m temporarily not allowed to eat but I am deeply in love with). AND two different groups of coworkers got us gift cards for takeout food and groceries. Google, I know you’re reading this and you’re a little scary sometimes but you have some lovely people working for you.

Just kidding, we’re not revisiting how I got diagnosed because I was too tired last week to finish the post. Instead, we spent the week dealing with a new upsurge in symptoms, culminating in a 16-hour ER visit (everything’s fine, don’t worry). It started with chemo last Monday, which I arrived at ready to roll on our final few months of treatment—I’d spent the week at the lake house and felt rested and, for once, not particularly anxious or stressed about treatment. Chemo flew by (admittedly with the help of my good friend Ativan), and we took photos of me smiling with my big chemo pole (scientific term) of fluids and drugs. Then I got home and things took a turn, which I posted about on social media (and below). Posting anything that’s not yay rah stuff on social media is a vulnerable, awkward thing to do. I don’t really like reading tons of complaints on my instagram feed, but I also think the constant stream of overly positive and heavily edited photos can make anyone feel like their life is full of drudgery. And I worry about feeding the idea that smiling or projecting an all-positive attitude is “fighting” harder than others is a dangerous way of thinking, explained well in this article: https://www.the-pool.com/health/health/2018/24/Sali-Hughes-on-positivity-and-fighting-cancer.

So here’s what I posted on Tuesday morning, and then more details on how our week panned out:

@nfeels: Before and after of how quickly a cancer patient’s day can go badly: infusion went fine and I was all smiles, but by late evening the drugs (2 of them are particularly nasty) had hit my body hard. My entire chest was more inflamed than it’s been since my tumor was full-sized 6 months ago: I couldn’t get a good breath; my port hurt like crazy and looked angry; I could see a whole new set of bright blue veins across my chest; it was 90 degrees out and we forgot to leave the air on during our 7 hours at the hospital so in addition to being an oven, our a/c kept shorting out the electricity. After a lot of crying, wet wash cloths, and trying to decide if I needed to call my doctor late at night, I eventually took 4 different drugs and despite one gasping for breath, heart pounding wake up, I fell asleep sitting up in our semi-air conditioned living room. Social media is a lot of smiling and filters and pretending life is perfect, and I realized I was doing the same. So here it is: not the best, but could be worse. And I just have to keep telling myself that today will be better because really, there’s nothing else I can do.

A little while after I put this up, I messaged my medical team an update and eventually started to feel a little bit better. While the neuropathy (nerve pain caused by the chemo drugs) is almost always present in some form, and most concerning for me the area around my tumor was still swollen and painful, some of the pain started to fade during the day and I thought maybe we’d just had a bad night. My doctor wasn’t sure what would cause this surge in symptoms and ordered a CT, mostly to make sure my tumor wasn’t growing again, but we couldn’t get in until the following Wednesday–and since they didn’t send me to the ER, I tried to just relax. But for the next few nights, I would lay awake with my legs lit up with nerve pain and my chest pains, and when I did eventually try to fall asleep I’d wake up shortly after, gasping for breath. It was..unpleasant. On Thursday, I talked with my doctor and physician’s assistant and we agreed that if anything got worse, I should call them and head to the ER because without a CT, they wouldn’t know if anything was growing back, if my heart was struggling in some way, etc. Then as I was trying to fall asleep that night, I started having shooting pains and tingling in my left hand and arm. Although tingling and pain in all extremities is pretty normal for my course of treatment, whenever it’s flared it’s been in both hands, not focused on one side. So after a call to my doctor, we packed up our hospital stuff and headed in at about 11 PM.

For those that don’t work in a medical setting: emergency rooms are disgusting–the level of caution taken with bacteria is in an entirely different, dirtier universe than what I’ve gotten used to in oncology, where everything is double sanitized right in front of you and we all wear masks.

I should explain why my counts are so low and the idea of being somewhere full of germs is such a problem: while basically anyone on chemo has a compromised immune system, my course of treatment is particularly harsh on my white blood cell count (WBC). For many courses, you have to keep the WBC up to continue administering treatment, so people get injections of drugs like Nulasta that raise your count level and give your body some immunity. Like many other leukemia and lymphoma patients, I’m not allowed to take those drugs because it has contraindications with my treatment. A normal, healthy woman has a WBC between 4,500-11,000. In the breakdown of WBC types, you should have a neutrophil level of 55%-70%, since those are key cells in fighting off infection. My WBC on my strongest days is about 1,500 to 1,600 (and lower on others) with a neutrophil level of 6%, or .1 absolute neutrophils. Lymphocytes are also important, and mine are at a higher level than my neutrophils, which is comforting. But basically I have almost no immune system–which is pretty terrifying, and the reason for all of the precautions we have to take. But it’s also kind of amazing what my body has been able to do–I’ve gotten a couple of low grade fevers so far where I’ll get into the high 99s, and then my body will somehow manage to regulate itself back down. So those few fighter cells are doing their best, apparently, and everyday we wash our hands a million times, I barely go in public places and wear a mask every time I leave the house, and I am never, ever around sick people.

So when I walked in to the ER and the clerk was wearing a mask and gloves, I wasn’t super encouraged that this was a great idea. I asked if she was sick and she said she had a cold, and while I appreciated that she was masked and gloved I was also panicked that I was only a couple of feet from her, surrounded by other sick people. The triage nurse was great, though, and when I told her I was neutropenic she immediately checked me in instead and seated me in a separate area from the other patients. And then we didn’t leave the emergency department for 16 hours. We slowly did all of the tests–bloodwork, an EKG, an ultrasound, finally around 4 AM I got the hoped-for contrast CT. We were in a room in the Mezzanine, still an ER room and still disgusting (literally you can see the dust bunnies under chairs because it is so rarely well-cleaned), but at least it had a sliding door and I was able to sleep between tests. I was so exhausted only a few days out from chemo that I barely woke up for the 4 AM chest CT, only fully awake when they put the dye in that makes my veins feel hot and full. Nico slept on a chair with his feet on another chair and woke up at 5 AM when we were told we needed to pay an enormous ER fee and coinsurance on our health insurance–knowing this was incorrect, Nico got on the phone and haggled with the insurance people, then the hospital billing people, and eventually everyone gave up and said we could deal with it later.

A few hours later, around the time that the cancer clinic opens at 8:30, we heard that the CT was clear and that the mass in my chest had not started growing again. Great! Can we leave? Nope. I’d had a feeling this would happen–my oncologist wanted another echocardiogram to make sure my heart was okay because I’m in a clinical trial and we still don’t totally know what the combination of my immunotherapy and chemo will do to peoples’ bodies. So that meant another 9 hours in the ER where they don’t feed you, don’t give you toothbrushes, and you know, everything is gross.

Luckily, I was on Instagram and saw that my good friend M was at a delicious diner in the South Loop. We hadn’t told anyone beyond our families and our good friend/extended part of our household, A, that we were at the hospital, but I texted M and asked if she might have some time to drop off a breakfast sandwich for me. Nico went home to shower in the hopes of going to work at some point, and there aren’t really any good food options near Northwestern. 25 minutes later, M bounded into my hospital room with a GIANT breakfast sandwich, complete with bacon and fried potatoes. Since I wound up not eating until 6 PM that night, this was definitely the high point and life saver of the day. She then left to do a 2 hour video conference call from somewhere in the hospital, proving that although she claimed earlier to have time to bring me food, she definitely did not. Our friend A also offered to come to the hospital anytime if Nico needed to go to work–we didn’t need to take her up on it because Nico’s boss let him work from the hospital and he could move some meetings around, but I could feel his relief when I told him someone else could help if needed. I know I’m constantly saying we have the best friends, but we have the best friends.

Eventually, we got the echo. Just getting from my room and back took almost three hours, even though the test itself takes about 20 minutes. The tech told me everything looked good–then two more hours went by, and we didn’t see a doctor once. We started asking any nurse that walked by for help, and around hour 14 or 15 we both started to lose it.  Finally, I got a call from my doctor that everything looked good and she was fine with me leaving–but we still couldn’t leave without an ER doctor signing off. So then I just started taking off all the monitors to make as much noise as possible. Nico laughed as I tore all the heart monitor stickies (again, scientific term) off my chest and stomach, took of the hospital gown–at this point covered in gel from all the ultrasounds, and got dressed with the machines beeping and beeping around us. Eventually an ER doctor came in and tried to get me to again recount my story–I stopped him, told him I’d talked to my oncologist and asked if we needed to review this again. He agreed that we didn’t, signed my paperwork, and let the nurse remove my IV while I asked her repeatedly to do things to make that process more sanitary–new gloves, another new gauze, etc. She was extremely helpful and humored me the whole way, and we finally got the hell out of there.

We still aren’t sure what’s causing all this pain. My medical team thinks my body is developing a sensitivity to the chemo, which is not at all surprising. I’m sensitive to artificially scented bath products–chemo is actual poison. Can’t fault my body for that sensitivity, I guess. As I’ve talked to other cancer survivors, it sounds like the last couple of months are always the hardest because your body is just exhausted and less able to fight back against the effects.

So now I’m on my own little mission to do what I can to decrease inflammation. More sleep, smaller and lighter meals, as much exercise as my body can take because movement does seem to relieve the neuropathy a bit.  I’ve started keeping a spreadsheet of my meals, sleep, pains, etc to see if I can identify some triggers/at least create a false sense of control and understanding.

Throughout the hospital visit (at least until our slightly collective meltdown at hour 14), I was pretty calm. My concern was that the cancer had grown and I knew that that would be a long term issue, I’d get admitted, and my unicorn oncologist would come up with a plan, like she does, and I felt like I needed to stay calm if that was the case.

But over the weekend, I think the stress of how hard these last couple of months will be hit both of us. People have said I still seem like myself, but being sick is lonely–people’s lives keep moving and yours stands still. Everyone wants to find silver linings in your life, and yes, it’s great that my treatment is working and I can’t wait to be done. I am lucky. But Nico is exhausted and has to do a ton on his own to keep our lives running day to day in addition to a still-fairly-new job. Recovery after chemo will be long, so it feels like we’re still about 8-9 months, the better part of a year, from any kind of normalcy.

So we had a rough weekend. I cried a lot, Nico cried some (possibly both fueled by exhaustion), we argued way more than usual about stupid stuff like the apartment and our laundry (our building’s already terrible dryer broke, of course, so Nico had to spend an afternoon at a laundromat) and how we’re spending time. We had some reprieves–we got to watch a friend’s daughter’s bat mitzvah on webcast (I used to babysit her, I cried some more), my cousins who I love visited and lounged with me, and we got to see Fanny for the first time in months (more on this another time, but obviously I cried some more). But the hole that is social media was full of glasses of wine by the beach, weddings, bike rides, hikes, and all of the things that feel so far away right now. So I deleted instagram from my phone, logged out of Facebook, and focused on the season of Great British Baking we’re on right now. Trying to look at the outside world wasn’t helping, and eventually we ended the weekend on a less depressed note. I’m guessing I’ll read back to this in 3 years and think ugh Nora you were so whiny–but I think this is probably just how people feel in chemo month 4 of 6, and I happen to be talking about it. And I know it will get better, and I know I am still crazy lucky that my treatment is working! Gratitude gratitude gratitude, as one cancer mentor says.

Today I’m feeling a little bit better–my chest hurts less when I eat smaller meals (though it means I’m a little hungry all the time), my new crazy early bedtime means when I finally fall asleep it’s not 2 in the morning, and so far my energy is steadily improving with my chemo off-week. Here’s hoping that continues, and that maybe my next cycle will be a little less eventful!

Now that we’re in the second half of chemo, here are some updates: first, my brain is fuzzy from the toxins and these blog posts might not be super well-written. I’ve finally decided it’s fine and I’m going to blog anyway. But that’s mostly why I haven’t written in a while: I write stuff and reread it and it’s jumbled and rambly and riddled with typos. Healthy people sometimes joke that they’re spacy all the time too, and while it is often funny, I generally encourage everyone to stop saying that to sick people/pregnant women/people on medications that cause these effects. The difference is what’s normal for you: I don’t feel like myself when I look at my phone and realize my text is missing three operative words or genuinely can’t remember something Nico told me just a day earlier. It’s not my worst side effect, but it’s pretty annoying. But thanks to some encouraging friends, I’m back at writing.

More importantly, treatment is working. The chemo is doing its job and we found out that it will put me into full remission by the end of this 6-month chemo course/9-month overall treatment—I’ve been very receptive to the immunotherapy and the chemotherapy, and so far (knock on wood because I’m sure the cancer is listening, plotting how to knock us all down a peg. Don’t worry cancer, I know you’re still in charge here) I seem to be a solid clinical trial participant. We are incredibly relieved. I won’t have to do radiation or a stem cell transplant, the two additional options that were on the table. The radiation was a greater possibility, and I’ve heard that whether you get it for Hodgkin’s can depend on your cancer center; a person I know in my clinical trial got her first opinion at another large cancer center, and they told her that basically anyone with Hodgkin’s gets radiation there. I should add that I don’t think there’s anything wrong with this. Radiation saves lives and if my doctor told me I needed it, I would absolutely have done it, so please don’t send me articles or messages about how you one time read an article on Facebook about it having bad effects. I, too, have the internet! While apparently Northwestern is not as radiation-heavy, it was still a possibility depending on how treatment went. In response to my repeated questions about whether I can end chemo early (the other person I know from the trial ended two months earlier than me and I went through a phase in which I was convinced I could too), Dr. K explained the numbers behind my plan: someone of my age with Hodgkin’s has about a 30% chance of recurrence (she has thrown around 40% before but we seem to be lower these days, which is v exciting) for a classical presentation of the disease. Since we didn’t catch this until my tumor was so large, I’m in a higher risk range, something like 36%. Before the end of chemo, my scans will technically be “consistent with someone in remission,” and for some people that might be enough to end. But we need get as far into the mass as possible, both to physically get rid of the structure and to hit the cancer as hard as we can to close that risk gap. The mass itself will become benign but may never fully disappear, and lymphoma (like many cancers) likes to hang out and restart based on any lingering, not always detectable cells. Essentially the choice was more chemo or adding radiation to my treatment—and the only reason she could even make that choice was that chemo has been so effective. After that talk, I finally stopped badgering her about my treatment plan (though she was incredibly patient with my persistent questions), and I settled in for the duration. I’m glad it’s working, and know I am incredibly lucky to be this responsive.

But I still have three months to go, and it’s been a rough few weeks. We’re now definitely in the phase where the cumulative impact of the drugs makes things harder—as of last week, my nerve pain (in my hips, knees, up and down my legs, in my chest) and chest inflammation are back most of the time, and I’m sick basically through Friday of chemo weeks. The weekend after chemo, my body seems to have a rebound effect where I feel pretty good for two days, and then I come back down the following week to a steadier fatigue/nerve pain/etc state. Sometimes I overdo it on the rebound days (because it is thrilling to feel a little normal even if I can feel the fatigue underneath) and then it takes me a long time to recover—when my cousins visited, I thought I felt almost normal on Saturday and Sunday, but was so worn out after that I could barely get out of bed for a day and a half. I spent our wedding anniversary laying on the couch without enough energy to even change out of my pajamas, which was depressing but also fitting for this strange year two of marriage. Still, other than one midnight ER visit, it’s been fairly uneventful—and that ER visit went fine; my calf was swollen and tender so we had to check for clots, but it turns out that a vein in my left leg is naturally twice the size of one in my right leg so it swells more in the heat. Fun things you learn about your body when you get all kinds of scans and tests, I guess?

Even with my symptoms intensifying, I’m enjoying this particular off-week. Someone told me when I got sick that things like cancer bring out people’s essential selves—generous people become more generous, self-involved people remain or become more self-involved. This is not a perfect rule; sometimes generous people have shit going on and really can’t do what they’d like to do—but in the case of my week, it’s very true. A friend’s parents (who have never even met me!) were generous enough to let me use their beautiful house on Lake Michigan for a weekend, and in the course of discussing logistics they wound up offering it to us as much as we wanted for about two and a half weeks. I kept asking if they were sure and they kept saying yes, yes, come and go as you please, you’ll love it! So here I am, in a large, lovely home with a well-stocked kitchen and giant screen porch. It happened to fall during a visit from my close friends from home (who are in the middle of a stressful cross-country move and are spending their “vacation” week hanging out with their sick friend who can’t go anywhere, because have I mentioned that my friends are the best?), so I basically got an accidental, unplanned joint vacation with one of my all-time favorite couples. Can you imagine getting to spend a week at a lake house with your oldest friends without sending a single email to plan it? Because through the magic of our friends’ generosity, that’s what I got right in the middle of chemo when I most needed it.

Until I woke up here for the first time, I didn’t fully realize how much constantly being in my apartment was taking its toll. After I counted that it’s been six months since I started treatment and was put on all these precautions, it seems obvious that I needed a break from those four rooms. I was going a little crazy, and it’s a huge mental break to be out here. I do have to miss time here because I go back home to do chemo…but right now, that doesn’t feel like it matters so much. We watch movies, take walks, they cook delicious meals, we all get a lot of rest in the quiet surroundings, and I’ll go home this weekend galvanized for more months at home. So this is a PSA: be generous when you can! People need it.

Finally: what’s next on the blog? I’m not teasing this or rolling this out like a lifestyle blogger (“This week we’re learning how to make one-bowl, sugar-free, gluten-free, dairy-free brownies that taste just like regular ones!”), but thought my next posts might need some context. My diagnosis experience was, for lack of a more imaginative word, crazy. I realized when my cousins visited that only the small number of people who I’ve relayed the long story to in person actually know what happened. So my next few posts will be explaining how we got here, both to share and because I wanted to write things down before chemo and life started to dull the details. It’s going to be broken into several posts because it is frankly a long story. It takes me a while to write each piece and no one actually wants to read a 5-page post at once anyway. So hopefully part 1 is coming tomorrow. In the meantime, here’s a photo from Fanny’s camp counselors—she seems to be luxuriating in her life in a carpeted high-rise with doting caretakers, but we miss that tiny weirdo.

Today I turn 31. I’ve started a few versions of a “how things are going” post that details the last couple of weeks—but being candid would be to describe how sick chemo made me last week, how frustrated I was, the number of times I cried, and generally how miserable chemo really is. Because (of course) the minute I posted (against my superstitious better judgement) that things might be going okay, things got harder. So I think I’ll leave it at this in terms of updates: chemo gets harder as you go because the drugs are cumulative, and that seems to have happened a little earlier than I anticipated. This isn’t a surprise, it’s just impossible to know what worse will be until it arrives—and then you think oh hey Worse, this is what you look like in person? You were cuter in your profile pic! But lots of people go through harder treatments. Many also withstand chemo without this huge amount of hope at the end, and I am acutely aware of that fact. I’m lucky that my cancer is treatable.

Enough about chemo though—instead I’m going to talk about getting a year older in this strange time. Somehow my mom never told her birth story with me until this morning: one week early, she was having normal contractions, and since I was baby #3 she wasn’t freaked out at all. Then her water broke around midnight, and the contractions suddenly became so intense that she actually had trouble getting out of the house. My mother is tough as nails: I once watched her swiftly chop off a snake’s head with a garden hoe because she thought it was coming for me. That level of pain for her is saying something. They made it to the hospital—she was already almost to the finish line, and I was born an hour later. I came into the world literally hard and fast.

During the diagnosis process, there was a period where I didn’t feel like I was going to survive. That time felt completely out of control, and it wasn’t until I was in treatment that I started to see my future again. I remember sitting in my hospital room, wondering what I was supposed to feel beyond a deep sense of fear. What if 30 was the number of years I got? How does this short life look from here? Of course I was in no way okay with that or ready to accept it—but I also felt like, you know what? In most moments of my life, I did the thing I wanted to do. Yes, I am a little disaster-prone…and yes, I have sometimes done things people think are crazy.

I moved to Chicago to be with someone I barely knew, I’ve danced on a lot of bars and have been asked to leave some others after doing indefensible things in defense of my friends, booked many last minute flights, I almost burned down my apartments a few times (by accident-and sorry Harvard Street roommates, I actually do regret that), I moved back to DC to work on an immigration bill at the risk of losing the person I’d moved to Chicago for (thanks for sticking around, Nico), I’ve had many arguments with strangers and friends about the things I care about…and a lot of other things that I’m not going to post on a public blog, but the list is long.

Being both impulsive and instinctive gets me into a lot of trouble—I am not saying I am unapologetically myself because I have given a LOT of apologies (heartfelt, I should add). But I act. Sometimes too hard and too fast, but I also don’t feel like I’ve missed much. I told Nico in the hospital that even though it was a huge leap, I’m glad every day that I moved here. My short life so far has been full of fights for things and people that I care about and I have had a wild, interesting time, even with some low lows along the way.

It seemed like today would be a sad day—it’s an absurd understatement that I’m not where I thought I would be on my 31st birthday. Definitely thought I’d be drinking on a beach in Connecticut by day and applying to dream jobs and apartments (okay livable closets) in New York by night, and I thought I’d feel that intensely when I woke up today. But I didn’t really make any plan, and for once didn’t attempt to engineer some kind of crazy birthday celebration. Instead, I’m doing whatever I feel like doing. I got to hear the surprisingly on-brand story of my birth over breakfast at my favorite place with my mom and one of my besties, watched some shows, ate cupcakes, got a visit and some treats from one of my U. City fam, and later I’m going to eat my mom’s fried chicken and drink (only my 1-2 approved glasses of) champagne and eat more cake. It’s honestly pretty great.

So my birthday wish is that you all go do something your gut wants you to do. Eat the whole pizza on your own, send a mushy text, dance on a bar, tell the creep in your office that they’re inappropriate and finally file that HR complaint, stop reading the book you feel like you should be reading but you secretly hate, speak up when someone says an offensive thing, cancel your obligatory plans and go sit outside alone. Maybe you’ll have to figure out how to handle the mess you made later. Actions have consequences. It is still completely, totally worth it. I’ll be here, temporarily not allowed to crash around because any risks are too dangerous for a bit. But I’ll be back soon.

It’s been a while since I’ve posted—partially because we’ve had lots of guests for both of our graduations, and partially because I think I felt a little superstitious saying that my most recent infusions have been going better than the first couple. They put me on some new meds for various side effects, and now that we are further from immunotherapy it seems like the inflammatory effects of that treatment have decreased. Together, the effect has been less nerve pain and less issues with acid, so my diet is back to normal. On my off-weeks from chemo, I’ve had good bursts of energy. All “things are going okay” messages during chemo are pretty qualified with buts—I get tired really easily, following the plots of book is challenging, I’m generally kind of fuzzy-headed, etc. However, it turns out you can basically adapt to a whole new life in a month or so, and I’m chugging along.

Graduating felt awesome, and I am so grateful that I was able to attend my program’s graduation (not my larger one or Nico’s, but taking what I can get this year). Pretty much summed up my feelings on that on my social media, but it was encouraging and helped put some fight back in me. I will make it through this to other things.

After graduation, definitely had an emotionally down week. While I was getting diagnosed in late February, Nico was getting a great new job in the Google New York office. The plan pre-cancer is that he would move about a month later (late March) and I’d follow after graduation. Luckily his new boss was amazing and let him work from Chicago until we can move, so he still took the job and whenever I’m strong enough we’ll go. But we would have moved to New York between my graduation and now—and being home alone the week after mine was a reminder that we aren’t packing, aren’t road tripping, and I’m not applying for jobs. Our current cloistered existence is so drastically different from what we thought our life would be right now, and sometimes it feels like someone else’s life entirely. I think Nico’s feeling that more this week following his own graduation, so at least we’re switching off and not sad at the same time? We’re figuring it out.

So here’s what I’ve been up to:

• Political stuff: Not working during this political dumpster fire of Trump chipping away at civil liberties and the rights of immigrants..well, it just sucks. If you can do things, please do. Go to tomorrow’s march—this fight is not over because Trump signed that executive order. The detention of immigrants across the country (not just at the border) is why I started working on immigration, and a lot of terrible parts about it are not new. The intentional separation of children is a Trump policy and the numbers of people being detained and deported under Trump are stunning–but as my friend Danielle pointed out, family separation has always been an integral part of our country’s deportation policies. Now that people are paying attention to it, please know that it is all bad. Family detention is horrific, the Flores decision should have done away with it forever during the Obama administration, and for-profit incarceration companies have successfully lobbied for policies that needlessly detain immigrants for years. If you’re reading a lot of articles and it sounds like a massive money-making conspiracy on the backs of immigrants, IT IS. Keep reading, keep getting involved, this matters.
• But YAY OCASIO-CORTES! I’ve watched this video multiple times this week and it’s a little ray of hope for the generation of politics to come:  https://www.youtube.com/watch?v=rq3QXIVR0bs
• Cooking: Inspired by the hilarious Kara Brown on fancypastabitch.com, I’m getting into making homemade pasta. A really good family friend visited and helped me figure out pasta for the first time, and she also taught me to make a galette, which is a delicious open faced pie that can basically be made with anything. So fun! And cooking projects have been good because it’s a one-day commitment, and then I can sleep as much as I want. Or I can give up partway through and it’s no big deal. Here are some recipes I’ve been enjoying, with Smitten Kitchen forever featured:
  • https://www.newyorker.com/culture/annals-of-gastronomy/the-butter-chicken-lady-who-made-indian-cooks-love-the-instant-pot
  • https://smittenkitchen.com/2018/06/watermelon-cucumber-salad/
  • http://www.wrytoasteats.com/heirloom-tomato-galette-w-honeyed-goat-cheese-caramelized-shallots-fresh-thyme/
  • https://smittenkitchen.com/2016/02/everyday-meatballs/
  • https://smittenkitchen.com/2008/02/seven-yolk-pasta-dough/
  • grilled pizza! it’s delicious.
• Reading:
  • Everything I can find about Pete Davidson and Ariana Grande. Especially that New York Mag article about BDE that I won’t link here because my family reads this. But find it, it’s hilarious. Very into the fever dream those kids are living and wish them all the best.
  • Light books: Reading complicated or sad stuff is hard and wears me out, and books that details violence, pain, etc, reminds me of my own physical discomfort. So I’m reading mysteries written for my mom, and My American Dream, which so far is a lot of idyllic detail about growing up on a farm in Italy. A+.
• Watching:
  • A friend sent me seasons 1 and 2 of the Nanny, and we’re both loving it. Fran is hilarious and every episode is like a hug—kind, light storylines and lots of New York talk which gets me excited about our future home. Fun fact: the creators were worried about people not liking that Fran Drescher is Jewish, but she refused to play an Italian American instead and they had to embrace her frequent jokes about shiksas and her Jewish family. The show also has early references to Donald Trump being terrible, Hillary doing more work than Bill, and global warming being a concern. She was basically a woke 90s pioneer.
  • Younger, which is also New York fluff—it’s recent, so more eh that everyone is white, but I’m still watching.
  • The Office-Nico and I have rewatched every season multiple times and I still love it.

Went another while without a post, so this is kind of a mishmash of an update:

Last week was really hard. First off, I missed the wedding of one of my big brothers in my #familynorelation. It was in Memphis, so many people I loved were there, and I was devastated. It looked beautiful and they looked so happy, and I facetimed in for speeches and cried watching the ceremony video. It reminded me that all of this treatment will lead to living life again at some point. I know people complain about weddings a lot—but when you’re not allowed to go, it’s heartbreaking. I’m not going to write more about it because it’s depressing, but for all of my able-bodied friends, enjoy that shit and don’t take it for granted.

My white blood cell count dropped right on schedule, around Thursday/Friday, and it sparked a rough reaction in my body. Starting Friday afternoon, I was breathless—it didn’t hurt to breathe beyond my usual chest pain, but I couldn’t get a full, good breath. Every time I almost fell asleep or did a little bit, I’d get out of breath and need to sit up, lean over, and catch my breath again. At one point, Nico and I were half asleep sitting up on the small couch in our dining room, because I can tip my head back and keep my airway further open there. I tried the doctor line around 2 am, but the doctor on call didn’t have any ideas beyond a lung infection—she didn’t think it had anything to do with my counts (which is what a doctor friend thought it was…and what good internet sources did too, so that wasn’t inspiring confidence in the doc) and said to see how I felt the next day, which is not a helpful 2 am response.

At 6 AM, sleepless and breathless, I finally called my doctor’s cell. She thought it was a response to the combination of low counts, inflammation, and acid, and told me to take Advil to test whether it’s being caused by inflammation. This is one of my favorite things—when she not only magically know what’s happening because she’s brilliant, but she finds a way to test it and make sure she’s identified it properly and it’s not an outlier response to something more serious. As always, she was right. Within the hour, I could breathe much better. Everything is still uncomfortable, but manageable. But on no sleep, I was deep in anxiety about my body, and basically spent the next two days anxious about my breathing and convinced I had a blood clot they hadn’t identified. Finally, another doctor friend suggested I get a little at-home pulse ox machine, which measures how much oxygen is getting into your blood and what your heart rate is—if those things are normal, your breathing and blood flow likely are as well. It was a game changer. When I would try for breath and not feel normal, I’d just look at my 98% oxygen level and tell my body to relax. It mostly worked. But having a tumor around your heart is just such crap placement and I’m ready for it to be out of there.

This weekend I actually started to feel like a cancer patient. Sudden, violent nausea (though not a ton, as long as I avoid triggers I seem ok!), even brushing my teeth left me out of breath, and I could barely eat without it causing inflammation and hurting my chest so I was super weak. It was sobering and hard after a couple of months of more functional treatment in the immunotherapy.

But my best friend since 3rd grade also visited! Daughter of a NICU nurse and asthmatic herself, she was the person you want around when you’re all worked up about breathing. Super calm, helpful suggestions, and ready to make Walgreens runs, do dishes, refill my water constantly (drinking a gallon of water in a day takes constant vigilance!) We watched the entire series of Downward Dog (watch it, it’s amazing and about an actual dog not at all about yoga), chatted, lounged, took walks as much as I could, and it was great. So grateful.

She also came with me to my infusion on Monday. I was really anxious going in after what happened last time. As I got ready to go, I tried to make myself look better to feel better. So I’m doing my hair goop routine, running it through my hair with my fingers..and I came away with tufts of hair for the first time. 20 MINUTES BEFORE WE LEFT. Really, universe? Really, hair? You couldn’t have just waited until we got through this stressful day? Nope. But we grabbed a hat in case it started to clump out and left. Cancer involves a lot of just keeping going even if you’re freaking out.

Meeting with Dr. K, as usual, calmed me down a lot. She did an exam and immediately pinpointed the part of my chest that’s most inflamed, and explained which nerves that spot would be lighting up. Knowing where the pain comes from makes a huge difference in anxiety, because it makes sense and comforts me that it’s not something scarier. And watching her get things on the first try is just comforting as hell-I feel like someone really understands what’s going on in my body, which is doing a whole lot right now. We’re also trying a couple of new medicines to combat the fun new symptoms, so we’ll see if that helps in the next week or so.

And then the infusion. Nothing terrible happened! I had a great nurse who was really experienced with my most toxic drug, which has to be hand-pushed through a syringe and is most likely to leak out of the vein. She was so calm, almost matter-of-fact about it that it helped me not worry about leakage either. Like last time, the final drug made me short of breath. I think it’s just that liquid has been pumping fast and hard into my heart through my inflamed chest for hours at that point, and my body is tired and angry. But she gave me a steroid to open my airway, more pepcid for the acid, and then my doctor’s physician’s assistant offered Ativan. Ativan is like baby Xanax, it’s a fairly gentle anti-anxiety benzodiazepine. If a doctor ever asks if you want this, say yes. My therapy education has made me more hesitant to think drugs are the answer..but it turns out sometimes drugs are the answer! Nico said he could literally see my face relax as it kicked in, and the combination of the drugs calming my chest down and the Ativan calming my brain down was such a relief. Since then, I emailed my doctor asking for Ativan for every infusion. No word, but it would be so nice!

So all in all, not our best week and it’s been harder to stay in good spirits. But hopefully future infusions are like this, and the new drugs help. Happy things to come this week, I’ll post more soon.

Home! I got to leave the ER around dinnertime last night. My heart and lungs looked good on the many tests they ran. My favorite test was the final one, the echocardiogram. The tech was friendly and talked through what we were seeing (they don’t usually do that), which was awesome. Seeing your heart as it’s beating is pretty encouraging (some might say heartening?) when you feel like your body isn’t doing what it’s supposed to do. Look at you, little heart, you got this! There are a couple of places that are particularly painful, and when she got to those I pointed them out and got to see on the monitor that everything looks good. Since heart inflammation or damage are possible side effects of immunotherapy, it was helpful to see that we’re in the clear on that going into chemo.

My doctor thinks the chest pains are worse because of gut inflammation from the Advil I was taking…to help my chest pains (which I think are probably caused my the mass in my chest, which is still there though smaller and much less malignant). But we think we can calm all that down with some meds and “gut rest,” where I eat really low acid food for a while to get my body back to normal. Obviously all I want to do is eat Indian food now that I need to eat really bland foods, but that’s ok!

I ate soup, slept a ton last night, got a call today from the good nurse from Monday to see how things are going, and generally am feeling much better now that I’m home and rested. Thank you everyone for all of your messages of support! And the biggest thanks to my mom, who stayed in the hospital with me overnight and had low-acid but still delicious foods waiting for me when I got home. She’s been an all star.

I wrote this late last night after a LONG day, so apologies for any mismatched tenses or improper phrases. I’m also exhausted today, so if you don’t hear back from me for a while, further apologies in advance! As a spoiler update, I’m still in the hospital waiting for yet another test, but it looks like I’m doing okay.
—————————————————————————————————————————————-This was not my day. It seems like it should’ve been—I got great news at my appointment: my cancer responded really well to the immunotherapy and is significantly decreased. My chemo protocol stays the same (I know because I asked 3 times in case she changed her mind), but seeing how much of it was gone from my body was incredible, and such a relief. SCIENCE, guys. It’s crazy. So I went into chemo pretty excited—while my cancer responded well to immunotherapy, the rest of my body didn’t love it, and we’ve been closely monitoring chest and lung pains for weeks, with some really intense chest pains this weekend particularly. But most people on ABVD and AVD (the one I started today) have typical (read: rough) chemo symptoms they need to mitigate, but there’s less subjective monitoring with big consequences. In chemo, you take your temperature if you feel sick and you keep in touch with your care team about symptom management. I was relieved to hopefully enter a phase with less vigilance and fewer scary possibilities. I was ready to do this infusion, go home, take a medical gummy, watch some Gilmore Girls and just get some rest.

If you’ve spent any number of consecutive days with me, though, you’ll know that somehow things just go wrong around me. The phrase “this never happens” comes up a lot—and admittedly, sometimes this is due to something I did, some weird situation of my own creation. Sometimes it’s the day of a move and I haven’t packed a single box, I really just want to eat Wendy’s and look I can drive there because of the rental van, we only have the moving van for a few hours and didn’t really ask people to help us move, and suddenly I’m asking a stranger on the street to please parallel park the van holding 1/3 (so far) of my belongings for me because did you know those vans don’t really have rear view mirrors? What is that? IT’S FINE. I can admit that that was on me…and this is the most mild example I have. And I think we all know that some guy I was sort of seeing was embroiled in that somehow. I’m an impulsive person and some of these situations are funny and self-inflicted. But cancer has brought the other category to the forefront: just random, unusual accidents involving machine and human error that are in no way my fault.

Back to today, with that in mind: we went into the infusion room feeling pretty good—I had my favorite infusion nurse, J, and a private room. The office was running behind, because Mondays can be a little crazy, but we were fine with it. The lineup for the infusion is a set of “pre-drugs” which in this round includes several long-acting anti-nausea meds. Then I get three chemo drugs of varying time requirements—something like 20 minutes, 10, and then an hour for the last one. Partway through the last one, I started having shortness of breath and trouble swallowing. When your chest is all inflamed, this isn’t a shocking response, but they stopped for a bit, gave me some fluid and did some some deep breathing, then kept going. No big deal. A different nurse, not J, came in to restart the drug. By now there were lots of tubes from the many drugs and salines, and J came in and explained which did what, and then the new girl did some cleaning up of the tubes so they were less confusing. Fine, whatever. She restarted the drug, we turned Netflix back on, and I settled back in.

And then I realized my arm was kind of wet. And then I realized there was blood on said arm. In a brief out-of-body moment I wondered if someone spilled some blood? Whose blood could this be? Then I realized it was MY blood, obviously. It was just pouring out of my port, pooling in my lap, getting on the floor, the bed, and on my clothes. Then a lot of things happened at once. I’d love to say that Nico and my mom calmly handled this admittedly horrifying sight. Instead they leapt up and said things like “what’s happening?? (as if this was some secret crazy part of the protocol I’d kept as a secret surprise from them) what do we do??” and I yelled instructions to pull the nurse chord, go find a nurse, and when those instructions didn’t seem to inspire action I just loudly but clearly yelled, “We have a lot of blood and need help right now please!” The area is small, so the nurse crew was there and fixing things fast. I made my family members leave the room because I realized they were panicking and this wouldn’t get less scary for a bit and I needed to sit quietly while things got fixed. The more I freaked out, the more blood there would be, so I tried to just sit there. Working in a trauma unit for 18 months helped enormously. Their response was totally understandable—it was scary as hell and this is not an “omg let me tell you what my family members did” post, it’s just literally what happened. I think my mom not going into hysterics while her child had blood pouring out of her was pretty impressive. (Note: Nico would like to add that when he eventually took action, he ran down the hall with his laptop in his hand yelling “can somebody help us??” which I don’t remember because I was busy not panicking, but I definitely believe.)

So then there’s a whole “chemo cleanup” protocol—which is used so rarely that the nurses seemed surprised by its contents. Because this never happens! We figured out that the new nurse had continued the drug administration, but removed the adjoining tube meant to test blood return occasionally, while somehow also leaving the valve of that now-empty side turned to an open setting by accident. So the drug was going in one tube, and the drug-infused blood was coming out of the opening for the old adjoining portion..spilling contaminated blood everywhere. Awesome! But luckily it all just got on the floor, the bed, and me, the person who needs to be contaminated anyway—at one point I looked at my bloody hands and thought “I hope I don’t have any small cuts that this could get in” and realized OH RIGHT IT’S ALREADY IN BECAUSE WE’RE INFUSING IT INTO MY BLOOD. I got a good laugh about that from the nurses (“yeah that ship has sailed” they joked) as they put on gowns and gloves to handle it—all except J, a selfless superwoman nurse who just got in there even when I was like shouldn’t you have a gown?? She was cool headed and calming and amazing.

Eventually the blood gets cleaned up, my habit of wearing all black is endlessly handy and you couldn’t see anything on me, I just seemed wet..until I sat on the new sheets and they also soaked through—but other than the blood stains when I sat down it was like nothing at all had happened. Then we finish off the infusion and start to get ready to leave. I’m not feeling great at this point. In the moment of crisis I was solid, but afterward I was feeling kind of light headed from all the drugs, my blood pressure was low, and my chest was tight and my breath short again. Possibly all from stress, but chest pains are scary in general and it’s hard to know.

We went home and I showered to relax (and you know, get that blood stuff off of me) but raising my arms to wash my hair made the pain worse..and if you’re going to go to the ER, you want to go at 8 PM and not midnight. So I consulted a close doctor friend to make sure my instinct was correct, and then called my oncologist on the way to the ER.

Luckily at the ER I got triaged by another amazing nurse who immediately made sure I got where I needed to be. At this point, I was only worried about inflammation from immunotherapy. But they start doing exams in the ER and quickly ask about blood clot history. I am terrified of blood clots, but it was the one time I actually wasn’t thinking about them..so I thought they’d finally caught me on my heels and attacked. Because that’s how it works—vigilance is like a life condom, right? Science.

So they do some tests and we knew fairly soon from an ultrasound that there’s no fluid around my heart (an immunotherapy risk, also probably the biggest concern based on symptoms) and no major blood clot in my heart (great!). Then we move on to x-rays, a CT, and bloodwork. After a few hours, the male supervising resident comes in and says I’m all cleared on the blood clots, he talked to my oncologist, and we can go home. Excellent! Home! But then the attending comes in to give final sign off, and she explains that while they’re pretty sure, there was one test on the CT that wasn’t done properly and could have indicated a small blood clot in an area away from my heart and lungs, but since it didn’t come out they couldn’t 100% rule it out. Oh, and a blood test that is an indicator (though not a perfect one) for a blood clot came back slightly elevated, but she thought cancer alone could cause that. But again, no one had shared that info earlier. I alreaey had my IV out and my discharge papers in hand. She is providing a lot more information, is an attending and not a resident so has more experience..and she’s a woman. There are SO many studies showing that male doctors don’t really believe women when they describe what’s happening, so even though I’d had good interactions with the guy earlier, I was annoyed that he hadn’t explained the full story. So suddenly there’s a faulty CT and an elevated blood test in the mix? Cool.

I was going to do whatever my oncologist wanted—I don’t really understand how significant or not the error in the CT was, but assumed she did and had been given all the details to make an informed decision. I said as long as they’d been up front with her, I was fine..but it’s clear from the call I overheard at 1:30 AM after this talk that they had not. And I feel terrible that she’s gotten a million calls, but all he had to do was give her actual information instead of what he decided was the conclusion of that information.

Long story long, I’m at Northwestern in a private ER room, probably totally fine and without even an IV in, it’s 3:30 AM and I’m honestly just wishing for a bed in the cancer ward so I can choose what I want for breakfast (note from Future Nora: I still don’t have a bed out of the ER). I’ll get an echocardiogram sometime tomorrow..and then I’ll probably go home and revisit my evening plans, just at noon a day later. Same thing.

Welcome to my life, with or without cancer. Never boring! I’ll post again soon so everyone knows I didn’t crash all of the medical devices at Northwestern. Oh and that I’m fine, etc.The mama and me after the super fun blood incident. Nico cropped any evidence out of the picture, which was a classy move. My chest is all red from the tape they use over my port when it’s accessed–my skin does not appreciate it.

Suddenly I’m 10 days out from chemo! It’s been two months since I was diagnosed, and these 9 weeks of immunotherapy have gone fast and slow all at once. Days feel really long because I’m home alone for hours at a time, but then suddenly another week has passed and I’m getting an appointment reminder for the next test. Time feels elastic in a new way that adds to the general surreal feel of this season of my life. Here’s the agenda for the next few weeks:

Every day: Anger at Trump’s immigration policies. It is becoming federal policy to separate children from their parents at the border—this goes against basic concepts of human rights and everything we know about child welfare. The policy even covers asylum-seekers, who have a legal right to enter the country. This is all traumatic and disgusting. My badass friends do immigration defense work for the groups linked, if you want to provide financial support to those fighting for immigrant families everyday: NIJC in Chicago; CDP in NYC.

Most days: Working on school stuff. Finals are due around Memorial Day, and I’m trying to finish everything before chemo starts because we don’t know how I’ll feel after. I’ve got two papers and one take-home final to finish, along with one lingering project for my field work. I’m tired and not doing my best work, but it’s still nice to have things to do. School is feeling more comforting than stressful lately, and I think I’ll be sad when it ends and another change comes in the midst of all this. I’m also trying to eat all my favorite things because chemo often affects your taste buds and everything tastes weird-fun!

May 18th: Morning PET scan. This is part of the clinical trial, and will evaluate how much work the immunotherapy got done on the tumor and general cancer.  We got to see my first PET scan at my most recent appointment—the last time we tried to look at it, the computer wasn’t working. Some of you may know about my (and my sister’s) ability/curse of electronics not working around me, particularly if I’m distressed or worked up. I know a lot of people don’t believe in this, but if you’ve ever spent time with me or another energy-sensitive person on a daily basis you’ve probably seen it in action and it is real. Cancer has brought it out in a big way, and I am constantly waiting longer for tests, procedures, etc because electronics break.  Like when they were administering drugs before my IVF procedure I heard someone yell from the OR (at the very fancy Northwestern fertility practice), “Keep her in there! All the computers randomly went down!” OF COURSE THEY DID. THEY SENSE ME.

Anyway, my original PET scan: there was a lot of cancer all over the top half of my body. Of course in my horcrux tumor, which was in the center of my chest and into my left lung cavity; it was about 13 cm x 6 cm, and I saw on the PET that it kind of wraps around my heart—this was more clear on the PET than the CT, and I’m glad I didn’t understand how close it was to my heart earlier. In addition to the horcrux, there were spots lit up under my arms and on my sides, and up and down my neck. I technically knew all of this, but seeing it was wild.

The new scan won’t change my course of treatment—even if it got rid of a lot, we’ll keep going with 6 months of chemo, and I’m glad I know that at the outset. I’m excited to see what the test shows, though, especially because a woman in the trial described her immunotherapy results as almost magical. So here’s hoping for some (science) magic.

May 20th: We hand off Fanny to her first volunteer temporary owners! Nico’s childhood best friend and his wife will be taking her for a while, and we are grateful and devastated to lose her all at once. It’s going to be a lot. My good friend D will be in town that weekend and I’m sure she’ll eat ice cream and help distract me, so that’s good!

May 21st: Chemo day! My mom will be in town for the week of treatment, and I’ll post more details about what chemo will look like soon. For now, I’ll be studying, eating, and spending time with the tiny dog before she goes away to camp!

Long pause between posts! Hair week turned into “is something wrong” week—spoiler: everything’s fine—so I got a little sidetracked from my hair adventures. Here’s last week’s recap.

Health stuff first: The day I got my hair cut, I started having GI symptoms that don’t really merit details here because I think we all know what that category entails? These issues aren’t a huge shock when you’re on a bunch of drugs. But I started having pretty bad stomach cramps and wound up on the phone with my girl Dr. K at 11 PM. The concern with actual pain is that it’s a sign of inflammation, which could mean that the immunotherapy drugs have turned my immune system on my organs. They worry about colitis, pancreatitis, gut, kidney, and liver inflammation. She told me that we’d need to run tests to make sure I could stay on immunotherapy; if something was wrong, I’d be pulled from the study and start chemo once they got the inflammation under control. So Thursday and Friday I had blood work and a CT with contrast and the delicious barium shake to check on stuff. Being a little sick wiped me out-the immunotherapy makes your body work so much harder, and fighting off something causes pretty intense fatigue. But we knew by late Friday that I was fine, and by Saturday/Sunday I was finally feeling better. So I went into treatment today feeling like my normal self! I celebrated by wearing heeled boots and real jeans instead of leggings and trainers. Small victories.

Family time: my niece was here! She’s almost 3, and she was a tiny adorable delight all week. We share a love of food and dancing around (she’s hilariously partial to 80s music?), so we had a great time. While I got my hair cut, she sat behind me and watched me in the mirror, continuously telling me how pretty I look and how much she likes the short hair. Highly recommend this kind of affirmation, it’s an excellent mental health booster.

Wigs: You guys they’re so expensive! We’re figuring out if insurance will cover anything, but I didn’t get to that last week. The wigs are almost bizarrely realistic (we’re not allowed to take photos, sorry!), but at $3,000 for the Cadillac wig and $2,000 for the lesser quality one, I’m not sure I want one. In terms of affordability, we could figure it out, there are just a lot of things I’d rather do with that money when this is all over (specifically go to the beach). If I needed to keep going to work instead of this happening during a weird in-between school and jobs phase of my life (and if I wasn’t incredibly lucky and privileged that Nico’s job can short term support both of us), and wanted/needed to regularly appear like my old self, that would be different. Or even if losing my hair was something I was really upset about—but oddly it’s not, even though I love my hair. For now I think it will be fine (I say all this now, I’ll let ya know in a month), so I probably won’t do a good wig unless a huge chunk is covered by insurance.

Update because this was originally misleading: This doesn’t mean I’m not getting ANY wigs! I’m exploring less expensive options and will probably get some fun ones or even pretty normal ones that just aren’t as high quality. My cousin is a professional actor and asking her people about the best ways to get some–I’m not trying to go wig-free for the next year!

Hair cut: This part was fun! I’m close friends with my hair stylist, which is pretty much ideal when you’re getting an emotionally charged haircut. Lisa has known me since right after I moved to Chicago, so we’ve kind of done our 20s growing up together over many glasses of wine and many haircuts. She is one of the most generous, kind, and funny people I know, and I am so lucky that she was the one styling! My hair is also super lucky, because she did a great job. She knows me well enough to push back when I try to do too much at once, so my hair stayed long enough to just tuck behind my ears, and then shorter in back. There was a ton of hair on the floor (photo below of just one round of it) and it affirmed my decision to cut it on my terms and not find all that in my shower or on my pillow. We might go even shorter pre-chemo, but I’m going to wait and see. Everyday I adjust a little more to not having it long, and the short hair shower is amaaazing. Men have it so easy! Now that I’ve experienced the ease of not dealing with 10 pounds of soaking wet hair, I’m like wtf long hair is the patriarchy.

Closet redo: My friend Suzanne, who was responsible for my delightful throw down of a wedding, visited this weekend—she’s an organizer extraordinaire, so I asked her to help me put away all the clothes I won’t be able to wear for a while. Particularly my good blazers/work clothes that I had all set for post-grad interviews, and all the pretty clothes I would have worn to the eight weddings happening in the next six months. I held onto a couple things for Nico and my graduations, but everything else is out of sight so I don’t have to look at them while trying to find my daily athleisure outfits. Overall, I think I’m pretty accepting of all the things I’m going to miss for the next year, but not having the daily reminder is helpful.

As always, thank you to everyone for all of your support! I get such thoughtful cards, packages, notes, emails, and visitors, and it makes a difference in my strange day-to-day. So if you’re reading and wondering if it’s weird to reach out, it’s not! I love it. I’m slow to reply, but I get back eventually.

Here are some pics–the first four are from the day I chopped the hair, and the last one is at today’s infusion.