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!