Reflections on Coping: The 1st Six Weeks of the REGN4018 Clinical Trial for Ovarian Cancer (1 of 3 – Feb. 2022)

These posts are excerpts from my free-writing, phone notes, and journal entries from the first six weeks of the REGN4018 trial. While my first posts hopefully capture the facts, data, and information about this trial from a patient perspective, these three posts are about how I coped and managed and the people who made that possible. If not for my family and friends I wouldn’t have made it through the start of this trial.

Feb. 22

All I can manage is 2 loads of laundry, feeding the cats and the dog, and heating food made by others. There’s no shopping or socializing unless someone comes to see me. I am leaning on the strength of others. I’m eating food I didn’t make, getting rides in cars that are not mine. There’s little I can do without help. Weekly treatments are intense and it feels like they bring you to the edge of death. Rigors. Chills. Fever. Sweats. Pain. 

Hard. Hard. Hard.  

Feb. 2023

The Lunder nurse asks me if I am safe at home. I get asked almost every time because it’s a question nurses are legally required to ask. 

Am I safe I think? Physically safe? Yes, yes I am. Am I safe from the stress, fighting, and moods when going through a break-up? No, not so much. But because of the cancer that actually takes a backseat to all else.  

The nurse asks if I am suicidal. I laugh out loud. 

Can one be suicidal with terminal cancer? I guess so but it’s not exactly the same.

And while I appreciate the question, as someone who understands childhood trauma and the lifelong impact – especially as relates to depression and suicidality, I do remind him that I am coming in, voluntarily to get a first-in-humans used drug dose that will give me fevers, abdominal pain, vomiting, diarrhea, and am risking a life-threatening cytokine release syndrome in the hopes of prolonging my life for months or maybe a year. 

“Suicidal” doesn’t seem the right word for desperately fighting to stay alive.

“Fair enough,” he said.

Know your audience, Dude, I want to say but know he’s just doing his job. My patient notes from him will say is: “Remains on standing Tylenol, tmax 99.7 this AM w/ associated chills. Vitals stable, O2 sat 92-95% on RA. Has noticeable dyspnea w/ conversation and ambulating.”

Feb. 2022

The nurse practitioner comes in to do a neuro exam. She is supposed to ask me to count backward from 100 by ten, but says ” I can tell by talking to you you are with it cognitively.”

“I will do it if you want,” I said, because I do not have confidence in my cognitive abilities and no longer trust myself to drive in the city at night or for long distances. I don’t know if it’s chemo brain, iron deficiency, or low blood volume or just aging.

“My reflexes aren’t what they used to be nor is my focus,” is the type of thing I usually say but I’m pretty sure I’m just getting dumber by the day.

The NP flashes lights in my eyes push on my hands, feet, and legs, and makes me resist her. She has me track her finger with my eyes and asks me to stick out my tongue. 

“You have a great smile,” she says, “I’ve never seen your face before.” 

Smiles. Smiles are another casualty of COVID. 

Feb. 2022

Yesterday at 5:30 am I woke up to intense beeping, non-stop, because a patient three rooms over coded. I tried not to stare but more than a dozen staffers are hovering in and outside his room. One of them ran into my room to get some piece of equipment.  

I hear someone yelling, “Do you have a pulse? Do you have a pulse? I don’t have a pulse.”

I wonder if he’s dying. I wonder if he’s on a trial. I wonder if he’s on the same trial I’m on. 

When the resident comes into my room hours later I ask what happened. I learn his heart stopped, they got it started and then sent him to the ICU. I decide he will stay alive and be o.k.
When I tell my friend Heidi this story she asks, “Is it bad I hope he is in your trial and if he is the 1 in 100 who dies than you will not be that one?”

“I don’t think it works that way,” I say and while I’m shocked I also appreciate being loved so much and so hard. 

Feb. 2022

My body has been requiring all of my energy, focus, and attention since I started the REGN4018 trial. I was (am) happy to be in the trial. I was (am) daunted by how much is required of patients to become eligible and once it begins. 

The rigors sucked. To shake, uncontrollably, while fevering was a new twist interrupted only by two doses of something, maybe it was dilaudid? Whatever it was, it worked quickly. The nurses kept saying the shaking had to be controlled and it was though I’m not sure what happens if it’s not. 

I need to note that bad and hard as the last few weeks have been, the love, support, attentiveness, kindness, and care from my loved ones and my medical team is even more intense. It’s almost overwhelming.

Also, pain clarifies and here are my big insights:

• Help helps
• Support supports
• It feels good to feel good
• It feels bad to feel bad
• Much social, emotional, financial, professional, and even creative engagement requires feeling good enough. 
• Rest requires wellness. It’s hard to rest and puke. It’s hard to rest with a fever or with pain because sleep and calm are near impossible to juggle with explosive diarrhea or dropping your glasses in a bowl of your own vomit. 
• It’s hard to feel dignified as an adult almost shitting your pants, unable to hold down food.
• it can feel like a failure when the blood pressure drops or the heart rate spikes or the blood oxygen fluctuates. 

I didn’t know having the breath to go up one flight of stairs was a luxury. 

I didn’t think it would ever feel aerobic to shower or do laundry. 

During the trial I start to wonder if ECOG score is changing. ECOG scores “describes a patient’s level of functioning in terms of their ability to care for themself, daily activity, and physical ability (walking, working, etc.). The scale was developed by the Eastern Cooperative Oncology Group (ECOG). 

When my sister wanted to organize rides for me and my cousin a meal train, I thought both ideas were kind but unnecessary. Through surgery, two rounds of chemo, and maintenance clinical trial, I could still take care of myself and get a daily walk with the dog in. 

My sister would say “let me come over and clean,” and I’d say, “Nope. Maybe someday when I need it,” but thought that was at the end-of-life not the start-of-trial. 

I’ve needed to grab the arm of others when walking. I’ve had to use the wheelchair too. Even when I tried to walk from the Termeer infusion center to the Lunder in-patient building I was told, “You’ve had rigors. You have a fever. We can’t deliver you to Lunder on your feet in this state. Sit down.” 

• I’ve been eating soups I didn’t buy or make, thanks to Jenny-Beth-Karen. 

• I’ve been looking at flowers I didn’t buy (thanks to Worry). 

• Beth got me spearmints and pistachio nuts. 

• Worry had mashed potatoes and homemade ginger ale delivered to the house for me. 

• Heidi got me an organic Pedialyte knock-off with no added sugar. 

• Diane got me pajamas to wear and sends uplifting memes.

• Lynn sent me an uplifting card. Kathy and Lynn got me a sacred “heal” box with such as feathers, a candle, a poem, and stones. 

• My sister visited and helped me organize the house for guests. 

• The lawyer rescheduled and rushed my paperwork (in case the trial doesn’t buy me more time but kills me). 

• The accountant wouldn’t charge for doing my returns though I paid him anyway. He said, “You have cancer and a kid in college, you don’t need to pay me.” 

I don’t know how to say thank you enough or to show people how much everything means, how much difference it makes, how much it lightens my load and reminds me I’m not alone. 

It seems I thank the nurses most. I fever-talk and fever-cry – especially in the middle of the night. To the first nurse who kept me company most of the night, I kept saying:

“Thank you for being so nice to me. Thank you for rubbing my back. Thanks for cleaning my puke bowl. I’m sorry my breath stinks. Thank you for being kind. Thanks for the coffee, crackers, and ginger ale. Thank you for caring.”

When I had arrived at 7 am, I went to the infusion center where they got my weight and started mixing my drug. They also did an EKG to check my heart. 

Then, my brother and I kill time for several hours before the pre-meds started. We talked. We played cribbage. We snack. We tease each other the way only siblings can. When the pre-meds started I got a little tired and dopey but not too bad. My brother threatens to take selfies with me drooling on myself if I fall asleep. He says he’ll do a fundraiser with the pictures. 

But mostly, all day I felt fine. 

My brother walked with me to the inpatient area and I told him to go home after he’d spent 12 hours with me because I thought my night would be as easy as the day. 

I was in my room for maybe an hour before my first fever kicked in. 

I think I fell asleep from 7:30p.m. to midnight because I don’t remember those hours. I know I woke up at midnight and puked, fevered, and got diarrhea til 5 am.. Things eased around 6 a.m., and I slept, but the vomiting and fever returned from 9 am-10 am. 

Though I was better during the day, my oxygen did go down, my heart rate went up, and  I still had abdominal pain bad enough to make putting my shoes on a painful process.

After my first admission, the nurse and resident doctor had debated letting me go. 

“You’re so on the borderline,” the nurse said but she seemed to be pushing for me to stay. She wanted to make sure the fluid wasn’t artificially raising my blood pressure and lowering my heart rate. She didn’t want me to leave only to get home and have to return. I should have listened to her and stayed put but I listened to the doctor who was fine sending me home because it’s where I wanted to be.

At home, Beth made me chicken noodle soup for dinner. Beth made sure I took my medicine. Beth was there when I woke up with a fever in the middle of the night. She was there in the morning as well. I took a ½ pain pill for my stomach pain. It’s worse than I expected, I told her, but “at least I don’t have the ‘kicked in the chest by a horse,’ level of pain Dr. Penson warned me of’ that some patients get.

After my first admission, the nurse and resident doctor debated letting me go. 

“You’re so on the borderline,” the nurse said but she seemed to be pushing for me to stay. She wanted to make sure the fluid wasn’t artificially raising my blood pressure and lowering my heart rate. She didn’t want me to leave only to get home and have to return. I should have listened to her and stayed put but I listened to the doctor who was fine sending me home because it’s where I wanted to be (but maybe wasn’t ready to be)..  

The BEST advice I got a few days after I got home from the first treatment was when talking to my friend Karen who is an ICU nurse who used to work on a research floor. She said, about the nurse and resident debating whether I should go home or stay:

“Who spent more time with you?”

It was the nurse who saw me vomit, moan, what I could and couldn’t eat, that even though I had intended to shower, dress, brush my hair or put on makeup I was too weak to do any of those things. It her who saw me curled in a ball, who saw my temp rise, who saw my blood pressure drop, who saw me counting 1 Mississippi over and over to kill time. 

The resident had seen me twice, each for less than 10 minutes. I will defer to the nurse going forward. 

After treatment 1, I was dehydrated, spiked a fever at home, and continued to have GI issues at home. Though it’s easier to sleep at home it’s harder to get fluids or oxygen if needed. 

I also learned I have to bring my snacks and drinks because so little at the hospital appealed to me when I was sick. And, I needed to have stuff in the room so if I woke up in the middle of the night hungry or thirsty I wouldn’t have to bother a nurse. I even started brining my own coldbrew coffee and soy milk so I could drink coffee as early as I woke. 

On the plus side, the treatment seemed to help my pleural effusion immediately. My lung was draining only 75 ounces and the first times following treatment are the only times there’s been no blood in the fluid. 

Plus, I think the lymph node under my armpit is also shrinking but that may be wishful thinking. 

Could I be doing better almost immediately? I hope so.

Feb. 2022

I got eager and cooked the barley soup, a meal train delivery. As I made it I wondered if I should have only the broth and tested my stomach but did not. I filled the tiny pan and heat it up. I could reach for my plates and cups, pet my animals, and curl up under soft and heavy blankets. I felt well enough to unpack my suitcase. 

First, I put away the unopened chicken broth, apple sauce, cold brew coffee, and soy milk. At the hospital, I woke up hours before breakfast so I started to bring my things. 

I then put away the light blue velour blanket that reminds me of the sky, a gift from a former coworker. I pull out the oversized pink cozy shirt coat my cousin got me for my birthday, the one all the nurses comment on. It looks so warm and comfortable they say, “or “I want one.”

When I bundle up in the hospital, I know a fever is coming. 

It always starts with baby chills and even before my temp gets to 100.4 when it’s technically a fever, or me, who averages a temp of 97.4, I feel like hell whenever my temp reaches 99.

“Do you feel malaise along with the tiredness?” I am asked by one doctor who says I’m iron deficient as well as low on hematocrit and hemoglobin.

“Malaise?” I say, as though someone has asked me to isolate only one shape or color in a kaleidoscope when they all blend to me.

I don’t think so, I say but I’m honestly too tired to know so maybe.

For a moment I forget that it was just days ago I woke up weepy, weak and worn out.

My friend Heidi was worried and texted me on Sat. morning to say, “Talk? Visit? Leave you alone? Just give me an update.” 

“I’m not a fucking warrior,” I said, calling her instead of texting. I’m not a warrior. That’s the shirt I want. I said, Not a warrior today, thanks. 

“I’ll be right there,” she said. 

“Not yet,” I said. I’m not even out of bed. I’m going to try to sleep some more but if you would come at 12, I say, I would appreciate it. I don’t know if I can make it from the lobby up to the lab without help. I can’t do almost anything I say and get choked up. 

“You can’t do anything now,” she said. “Everyone is wiped out by fevers,” she reminded me.

My fever had refused to break, I told her. I was 102 at 2 am and despite drenching sweats and ibuprofen, it was 101 when I woke four hours later. I was thirty, clammy and panicked. 

How can I get more of this drug when these small doses are making me so sick? I’m not sure I can do this,” I confess.

Can you set your alarm clock to ward off the fevers and catch them in advance she said. I’m a fan of fever therapy too, she said but you need a break. 

Ginger ale is the only thing that tastes good I say and I usually hate soda. 

Let’s figure out how much money you are saving on these free fevers she says knowing nothing cheers me like saving money. 

Well, I say, five hours of whole-body hyperthermia and four local hyperthermia sessions would have been done over two weeks and cost me 7500. Now, I’ve had the equivalent of whole-body hyperthermia every day since treatment started. I say I’ve saved 10,000 or maybe tens of thousands.

I’d asked the clinical team if anyone tracked who does or doesn’t get fevers and if that impacts who responds to treatment.

I don’t think so, I was told. 

I say I think it would be wise to track because I can already feel my big lymph node shrinking under my armpit. If it went from a protruding golf ball too hard to find. That has to mean something good.

I hope this is kicking cancer’s ass as much as this drug is kicking yours, a nurse said. 

I try to think of that when I feel bad I tell Heidi. “It feels bad but it’s doing good. It feels bad but it’s doing good.”

“I think I need a performance coach or a motivational coach,” I say. It’s early days and if I’m already this depleted I said I need help to get stronger.

Girl, That is the last thing you need, she says. You need comfort and to just get through this 

I need more mental toughness I say. I’m not feeling strong. I’m starting to waver.

No, she said, that’s just the fever. No one feels strong with a fever and the flu and those only last a few days, not a few weeks and you have all the other pain and side effects on top of it for weeks. You are worn down by the fever and the treatment just like everyone is when they are sick. 

She arrives with ginger ale and Pedialyte and coffee. She says, “You got dressed and put on makeup and a bra?” I didn’t even do all that.

I don’t want you to see how pale I am, I said. 

We get in the car and she places a blanket over my lap. “This blanket is for you,” she says and I almost cry at the sweetness of the gesture and how cared for I feel. Before long, we were laughing and I forgot how bad I felt. 

We get to the hospital and she offers to drop me off at the door.

I can walk now I say, I feel better, and walking helps to prevent clots because I’m on my ass so much. 

Are you sure she said that? 

I am, I said. 

Just because you can do something doesn’t mean you have to, she said. 

I know I said. Really. 

As we walk, she offers her arm to steady me. I point out the familiar places at the hospital, where we get masks, where the healing garden is or quiet reflection, where the infusion floor is, the place where Tom and I wept after I found out my cancer would no longer respond to chemo and a stranger brought us tissue and water. 

And then we arrived at the lab. 

Heidi asks if I can pre-treat my fevers at night by setting an alarm every four to six hours and rotating Tylenol and Advil. “Yes,” the lab tech nurse says, “if your doctor didn’t say not to you can.”

On the way home, I review my labs out loud. 

I’m very anemic. My hemoglobin is 8. When it’s 7, one is at risk for a heart attack. We decide to get burgers on the way home and because I’m also low on sodium we decide fries are medicinal. I rarely eat fast food but it’s the most delicious thing it seems I’ve ever tasted. 

I don’t care if the food won’t stay down for long. I still enjoy it. I’m tired of seeing kale, coffee, drugs, and supplements in my toilet. I remind myself to take small bites so I don’t choke when puking because I don’t want to die choking to death while working this hard to save my life.

I wish you the strength of 10 women Heidi texts when I head to the hospital or my first full dose a few days later. 

My brother drives me in at 6 a.m. I’m too nauseous to take the train as I’ve already been sick a few times that morning. 

The day before I texted him, “I might be too weak to take the t would you be able to drive me in?

He says.

Please tell me all about you and your life I say because I’m so sick of myself and feeling sick. 

He obliges and before long we are laughing and lost in conversation and I don’t use the puke bowl once.