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!