Reflections on Coping: The 1st Six Weeks of the REGN4018 Clinical Trial for Ovarian Cancer (2 of 3 – March 2022)

March 2022

Worry spent hours with me at the hospital after being made to wait an hour, outside, in the cold, for visiting hours. Then, Worry and Jimmy drove me home from the hospital.  Jimmy chatted with Tom in the kitchen and Worry and went to the living room and started unpacking my suitcase.

I had iced coffee, broth, and applesauce in my suitcase that needed to go back to the kitchen.

I brought my pink cozy and blue blanket to the basement to go into the laundry. Both make me feel wrapped in love and make the hospital setting less sterile. Jenny got me the oversized sweater coat which helps me stay warm through fevers. The blue blanket a gift from Ginger at the Attachment Trauma Network. It has inspirational words written in white. The blanket reminds me of sky and clouds and I spread it over the hospital blankets (glorified cardboard sheets) to make going to bed appealing. 

I unpack my sweats and tshirts and notice that this time I’m well enough to go up and down the stairs fairly easily. In weeks prior, I had to unpack the suitcase the day after I got home, and still it took hours. It is humbling to leave the suitcase in the livingroom because it’s too heavy for me to take upstairs. When I can climb up and down the stairs, while holding things, so soon after treatment, I feel victorious. 

After more than an hour Worry and Jimmy head home. I’m ready to try to eat soup, rest, and go to bed. But first, I will fever and get sick while Tom is out doing errands. I’ll be asleep before he gets home. 

March 2022

I was half asleep and Worry texted, “Do you need a ride home tomorrow?”

“I’m taking the train,” I reply. 

“You are getting your lung tapped,” she said. 

It will be straightforward, I think because I’ll be getting an echo right after. If I can do that I’m sure I can take the train. 

“Jimmy will be in Boston anyhow,” she said, “Call him if you need a ride home.”

I am too tired to argue. And the next day, when I in rougher shape than I had expected, I am grateful for that ride. 

My aunt remembers all of my appointments and my infusion schedule. She knows how I’m managing side effects, which foods I can eat, and how tired I am. She checks in with me daily. She mothers and nurtures and cares about me and reminds me I matter. And she does this for so many people, both healthy and sick, and ’m not sure how she manages to do anything else. 

March 2022

I sat in the office, and the nurse came in first. 

“How are you?” she asked. 

“Tired,” I said. 

“Looks like you have a transfusion planned for later,” she said.

“Yes,” I said. 

I can’t remember if I introduced the nurse to my friend Beth or they introduced themselves but we all got friendly and comfy. 

“I don’t even know my blood type,” I said. “I assume that will get tested.”

“Every time a transfusion is done,” she said. “You sit there till I’m ready,” she said, and I realized I looked as tired as I felt. The nurse practitioner popped her head in. 

“Should I come back?” she asked. 

“No,” the nurse said. 

“Did you see her heart rate? The nurse asked the nurse practitioner. It was written on a sticky note and left on the desk. 123 beats per minute. 

“Yes,” the NP said.  

I felt like Harry Potter in the Invisibility Cloak. Did they think I couldn’t hear them? The room was as small as a bathroom. 

The NP explained, “When you get surgery or chemo or join a clinical trial you have to give consent. Well, it’s the same with a blood transfusion, “We have to get consent.”

“O.k.,” I said. 

“Blood transfusions used to be scary, I’m sure you heard things about them in the ’70s and ’80s. They are extremely safe now,” she said, and I don’t remember anything else she said because I needed the transfusion no matter what the risks so I just signed the consent form. 

The NP asked to look at my PleurX site but the nurse wanted to get the labs going first. 

I moved to the clinical chair so my port could be accessed. The nurse rubbed a wet sponge over my port to clean it. Then, she said started counting, “One….. Two….” to warn me the needle was going in on “Three” and to hold my breath. 

“That was so nice and gentle,” I said. “It didn’t hurt at all. THANK YOU.”

“I get that every single day,” the nurse said to the NP, adding, “It’s not like it matters. Can’t put that on my tombstone.”

“Oh it matters,” said. “If I saw, ‘did good port sticks’ on a tombstone or in an obituary,  I’d be ‘F’ Yeah! Because sometimes it feels like we’re being stabbed when it’s bad.”

They both laughed when I swore but I was serious. Having a port accessed or getting an IV put in can either hurt or be pain-free depending on how careful, skilled, and unhurried the nurse is. It’s not nothing I insisted. “In fact,” I said, “When almost every physical thing hurts or is hard kindness matters most.”

“Can I see the PleurX site?” the NP asked as she and the nurse gloved up to peel back the bandage. 

“Oh,” the NP said, “That’s worse than Monday (when I’d been in for my infusion and labs), “It’s draining more,” and “It smells,” she said. “You need antibiotics.”

“And your poor skin,” the nurse said, noting the raw redness. “The Tegaderm can be so rough on your skin.”

“I’m super sensitive to the adhesives,” I said. I got more scarring after debulking surgery from the adhesives than the incisions before asking “Are there any alternatives to antibiotics like lancing the site or local antibiotics?”

“No,” the NP said.

“But antibiotics in the first 60 days of Immuno limit the effectiveness of the treatment,” I said, “What is the point of going through this torture to take a drug that is going to limit the chances it will work?”

“I’ve never heard that before,” the nurse practitioner said. 

“Me neither,” said the nurse. 

“Well, I was just on the phone with a naturopathic doctor yesterday who said that it matters a whole lot plus I’ve read a lot of research that says that,” I said. 

“You have to be careful reading online,” the NP said. 

“Even google scholar?” I asked. 

“Yes,” they both nodded.

“I almost want to quit the trial,” I said, “It’s so hard and now it’s less likely to even work.”

“Sepsis wouldn’t be good for your treatment either,” the NP said. 

“Can I take a picture?” Beth asked. 

“Take a picture of the bandage,” the NP pointing to the trash because it was green and goopy.

I felt defeated. I didn’t drill down and ask if they ever compared the outcomes of the patients who did and who did not need antibiotics. I didn’t offer to share the research or share my naturopath’s name and website. 

I accepted the “bless your heart” I was getting. It was familiar and what I oten got when talking about fever therapy as an anti-cancer approach. 

Weeks before, when I was admitted to the Lunder building at the start of treatment and was getting non-stop fevers for weeks, I talked about fever therapy all the time. Once, I brought in my book on the topic to share with the medical team assuming they would be interested in the topic.

But it seemed I was the one most interested in the topic. When the NP left the room, I said to the floor nurse, “She thinks I’m a wackadoodle.” 

He said, “She’s great and smart but you do you. It’s your body. It’s your life”

I appreciate the reminder. I hate feeling as though my body is just a car or an engine only the mechanic is smart enough to fix. I hate that no one asks why I need the car, where I’ll drive it, and what I’ve noticed about how it operates. I don’t want to be made to feel like I’m just a passenger in my body, soul, and psyche. I want to be treated as though I know patterns, secrets, trends, and the vehicle’s history because I do.

At the office, beore leaving, the nurse told me to hold tight and stay put because the clinical trial team still needed to see me. 

The clinical care coordinator came in little later, a young and competent woman I introduced to Beth. She is the one who manages my complicated schedule and coordinates all appointments. 

“How are you?” she said. 

“I’m o.k.,” I said. 

“No, you’re not,” she said and laughed, telling Beth, “I called her yesterday and she’s like, I’m terrible, might need a transfusion, but I’m fine.” I told her “It’s o.k. to not be fine and to tell us when you’re not fine.”

“She has a hard time with that,” Beth said. 

“We aren’t sure yet about your schedule,” the coordinator said. I don’t want you coming in for the echo tomorrow if you aren’t having treatment next week. I already pushed back the CT. We’re going back and forth with Regeneron on your case and we’re not sure if we will do the full dose of Regeneron outpatient, as was planned, or escalate by adding the Cemiplimab and skip the full dose of REGN4018 as an outpatient.

“I’m not ready for escalation,” I said. “I’m not even sure I’m ready for the full dose of the as an outpatient. I may feel different after the transfusion but it’s unimaginable to me right now.”

“We have three days to play with your schedule so we could push it back within the same week,” she said. “And patient input matters so we can share if you’re not ready for more.”

“Thank you,” I said because I was barely coping with the treatment and side effects I was dealing with.

Plus,” We need to see how your labs are,” she said. “Your CBC is back but not the metabolic panel.” On Monday, my treatment was postponed because my liver counts were seven times normal. 

The clinical trial nurse came in. 

“Cissy,” she said, “How are you?

She’s a forty-something single mom of twins. We bonded over being single parents over the years and always have an easy rapport. 

“I finally had to say Uncle to the transfusion,” I said. “She kind of made me,” I said, pointing to and introducing Beth. 

“Good,” she said. “She needs someone to call her out and help her admit when she needs something.”

“We were supposed to go to lunch today with our daughters today,” I said, but Beth was like, ‘Nope, that’s not happening because you need to go to the doctor.’ 

“Thank you, Beth,” the trial nurse said. “It’s why we need loved ones to come to appointments so we can hear how people are doing.”

“I am upset about the antibiotics and the transfusion,” I said, getting teary. “I’m starting to wonder if I can handle this trial.”

“You can and we will help. The blood will help,” the trial nurse said. 

I lost 7 pounds in the first three weeks. I was keeping up with my fluids to prevent dehydration but I couldn’t eat much. 

“Fevers burn calories. Infections burn calories. You need to eat more,” the clinical nurse said.

“I know,” I said because my naturopath said the same thing the day before. He said i I couldn’t eat more I’d need to move less but that I needed to try to get in more calories.

“Do you like peanut butter?” the trial nurse asked. 

“Love it,” I said. 

“Spoonfuls of peanut butter are good,” she said. “And smoothies.”

Usually, I have both things daily but have been unable to stomach them since this trial started. 

“I will try harder to eat,” I said and then thought about the conversation I had with my siblings. 

“I don’t even know who I am not being hungry,” I’d said to my brother earlier in the week. 

I don’t think I’ve ever not been hungry or had to force myself to eat,” he said. 

I usually finish eating and immediately start thinking about what and when I can eat again,” I said. 

“If I’m not hungry,” my sister said, “Something is seriously wrong with me.” 

“Like advanced ovarian cancer,” I said, “a fever for a month, an infection, and fluid aroung the lungs?”

“Now, it’s hard to know if your fevers are from the drug or infection,” the clinical trial nurse said. “You are the first patient on this trial getting transfused. It’s not bad. It means it’s hitting your immune system hard. Maybe the fevers or infection or impacting it as well,” she said.

“Look at the liver counts now,” the coordinator said to the trial nurse. “They are almost back to normal. We didn’t expect them to recover this fast,” the coordinator said. 

“Wow,” the nurse said. “See what a break from Tylenol can do?” 

I had worried that my high liver counts might get me kicked out of the trial if they were from the drug itself (REGN4018) and not the Tylenol.

“She is happy to hold off on the escalation and even to delay treatment next week to later in the week,” the coordinator said. 

“We can do that,” the nurse said, looking at me.

“Thank you,” I said to both of them. “Thank you so much.”

They also said that the blood typing came back and that my blood type is rare, O positive. I thought O was the most common type. 

“Nope” the coordinator said. “You have o positive blood so you can only get o positive blood for your transfusion.” 

“You’re saying my blood is positive?” I ask.

“Of course it is,” the coordinator said. “‘I’m not surprised.”

I was surprised though because I don’t think of myself as a positive person.

“You can go see if they are ready for you in the infusion center,” the coordinator said. 

—

Beth and I leave the office and head towards the stairs to go down one floor. “Wait, you don’t need the stairs,” she said, “You don’t need to burn any extra calories right now. Let’s hit the elevator.” 

When we got to the infusion center there were only three people ahead of me so we stay in the waiting area. As we sat down, Beth pulled out her homemade banana bread. I ate a slice even though I wasn’t hungry because it tasted so good. It felt good to want to eat.

“Thank you for being here today. Thank you,” I said. “I didn’t realize how bad it got, or how low I was getting,” I said. By low, I meant low energy, low blood counts, and low mood. 

Beth is my health care proxy and she had driven to Boston that morning, to pick me up at the eye doctor’s appointment as I wasn’t sure I could walk the three or more blocks to MGH that day. It’s humbling to be too weak to walk much.

“Thank you,” I kept saying to Beth. 

“Thank you. I didn’t know how bad I was. 

 Thank you. I thought I was o.k. 

 Thank you. I thought I could just keep going.”

“You can stop saying thank you,” Beth said. “You sounded awful yesterday.” 

“I did?” I said

“You did,” she said. 

“We will have to have a measure for your replies from now on,” she said. “Truth or lie?” she says holding both hands out as if I’ll have to pick one.

“I’m not lying though,” I said, “it’s like I don’t know how bad I am.”

“I know,” she said. “I know you don’t lie.”

“It’s more like you need to ask me, ‘What do you hope isn’t true? What do you hope isn’t happening? What do you hope you won’t need?;” 

I said I hold on to the worries. 

I’d hoped I wasn’t infected but thought I might be, I said. 

I hoped the smelly drainage could be reversed with local antibiotics and a turbocharged immune system but started to realize it would probably require antibiotics which I didn’t want. 

Why should I tell my loved ones about my worries? What was happening in real-time is conversation consuming enough and half of what I’m worried about turns out fine. The least I can do is hold back worries. 

‘What are you not telling me yet?’ might be another way to get at stuff, I said, though I share more details about my health with Beth than I do with anyone. 

Beth has come to most of my infusions. She’s seen me drooling on myself while asleep after Benadryl and listened to me blabber when revved on steroids. Every patient has some nerves and mood swings from the drugs and nerves on infusion days. Beth would rub my feet during chemo when the two nurses came in, gowned, masked, and carrying “hazardous materials” warnings on my chemo bags checking and double checking the drugs, patient, and dose. 

The moment the drugs go in terrifies me because I’ve heard of allergic reactions that knock people out, stop treatment, or cause hospitalization.

As my health care proxy, Beth has access to all my medical files, and the doctor and nurse notes were written up after each appointment. There’s little she doesn’t know so I don’t even have to try to tell things with a positive spin. She will see the same blood tests, scan results, and echocardiogram interpretations as I do and just as soon if not sooner. It will be Beth who will have to make hard decisions (with help from my brother and sister) if I lose consciousness or have a medical emergency. 

It is Beth who has been by my side regularly since I was diagnosed.

“Today, was the first time I started to think seriously about medically assisted death,” I confess. “I wondered, before getting out of bed if this trial is not only too much for me but too much for my loved ones.”

“I’m SO needy now,” I said. I’d hated that while my daughter was home for a week’s vacation from college, I spent most of the time on the couch. I hated that after we ate together, less than an hour later, she could hear me vomiting it all up. I hated that she was asking to get me ginger ale. It’s not just that I am no fun, it’s that I’m not well enough to nurture her. If I leave the house, it’s for medical appointments or to fill prescriptions. 

When my treatment was canceled due to high liver counts I thought, “Maybe it’s for the best so I can enjoy the vacation with my daughter. We can get massages or pedicures. Maybe it’s a blessing in disguise,” which it was, but not in the way I’d hoped. 

My ex-husband called two days after Kai got home at 9 am to say there was an emergency, that their beloved cat was super sick and on the way to the vet, and was vomiting and paralyzed. He wanted Kai to know and go to the vet where his wife, Kai’s step-mom, was driving to. 

I woke Kai up and told her what was going on, to get dressed because even though it might be a virus or something treatable it might be the last time she’d get to see Z.  

At the vet’s office, Kai found out Z had thrown a clot, that he was in pain, had serious heart disease, and could not be saved. He was going to have to be put down. 

It was a sad, shocking and sudden loss, and the only silver lining for me was that I was able to be there for Kai because I was not at the hospital, not feverish or vomiting. I was able to rally.  I was well enough to drive her to the vet, to bring her to her step-mom who brought the cat in. I was able to wait in the car as comforted, cuddled, and said her goodbyes and grieved.   

All-day I kept saying thank you to the god-goddess-the universe for a day I could mostly just be a mom. It was me who could drive Kai to her errands so she could be sad and distracted and not have to shove down her feelings to focus on driving.

But the very next day I was couch-bound again, weak, and extremely short of breath without exercising. Everything, including talking, made me winded and wiped.

“I can’t be there for her, for her grief, or to help if I’m dead,” I said to Beth as we waited or the infusion nurse to call us in.  

Losing the cat had been hard enough. I couldn’t help but think of what it would be like when she lost me. I didn’t want to think about it either. Of course I do think about it but I felt about it that day and it gutted me. More than losing my life, I worry about losing my ability to be there for my daughter. 

I burst out sobbing even though we were in a hallway. 

“The tears weren’t all about the cat,” Beth said. “Not yours or hers.”

It was like the weight of my death as a mother hit me in the heart and knocked me over and I couldn’t even admit it out loud til I saw Beth. We kept hugging in that hallway til Beth leaned back and burst out laughing. 

“I’m so sorry,” she said, “but your tears are green, bright green like Chernobyl green, like neon green.”

“No,” I said, “They are?”

“Yes,” she said, “I swear.”

Then I remembered all the drops put in at the eye doctor’s and started laughing. 

“Never speak of this again,” I said. 

“I don’t know if I can promise that,” she said.  

“Do not take a picture,” I said, “I want to forget this.”

As we half-laughed and half-cried, a very pale man went by in his wheelchair. He was at our eye level because we were seated. He smiled and gave thumbs, and said, “to whatever is happening here,” as some sort of solidarity. It was camaraderie and kind because he was heading to or from his treatment and with someone who was pushing his chair. 

The transfusion itself didn’t take long. Within fifteen minutes, my heart rate had already gone down below 100. 

“How do you feel seeing the blood?” the nurse asked me holding the bag up. 

“Strangely it freaks me out more than the toxic chemo that is clear and looks like water,” I said. 

“Do you want me to hide the blood,” she asked?

“Yes please,” I said, wondering about the person and the blood that was being delivered inside my body or it was the blood of several people.

“Am I supposed to see red?” I asked when getting transfused. 

“Um, no,” the nurse said, walking right over to me.

Everything looks a little red or purple, I said and then I remembered my eyes had been dilated this morning and it was the big open windows and sun screwing with my vision. 

“That makes more sense,” the nurse said as she closed the blinds. 

An hour later I asked, “Can I be feeling better already?” 

“Yes, she said, especially on your first transfusion, you even look better.”

“I think I can take the T home,” I said to Beth. “I feel that much better.”

“I’m prepared to drive you,” Beth said. 

“It’s not necessary,” I said,” But thank you.” 

“Is she allowed to take the train home?” Beth asked the nurse.

“Yes, she said if she feels o.k.” the nurse said. 

“O.k.then,” Beth said allowing me to go home via the T.

Kai picked me up at the train station near our house. I’d been gone all day and when I got home, I noticed how she cleaned both bathrooms, vacuumed the living room, and was going to cook dinner.

It was bittersweet to have baby girl taking care of me. I wanted to cry. I will make myself eat whatever she cooks I promised myself even if it all comes back up because it feels so good to be home. 

March 2022

I am hopeful. I am grateful. I am relieved to feel much better than I did last week. I am hopeful about this trial. Last week, I wasn’t sure it was something I could do for long last week but now it feels like it will be manageable

March 2022

“The radiance found under the sparest of circumstances,” is the quote we free-write to. It’s a quote from either Jane Hirshfield or Dorianne Laux that Lynn shared.

My cousin Danny calls me to ask what I’d like to eat this week. It’s his turn on the meal train and he’s wondering if I’m craving anything. It’s his last week off before heading to his new job full-time at Cafe Martin. The restaurant was started by Adrienne, in honor of her now-deceased husband, John Martin who lived with ALS for two years before dying in 2018. While he was sick he, his wife, and friends would hang out in his backyard. His wife Adrienne kept the spirit alive by opening Cafe Martin in Newton, MA. 

My cousin Danny will be a bartender and already he says he loves this place, that the work is meaningful and the hours pretty predictable making it so he can be home four nights a week for time with his own family. Plus, he feels appreciated.

“You’d like her,” he says to me about his boss. “She is into Tarot, crystals, and healing stuff.”

“We should go sometime at lunch, ” I say to Jenny to meet this woman and see Danny at work. 

My cousin Jenny came over yesterday to visit and to help me make the porch look nice (and to help me move around some furniture). She brought her homemade soup too. 

All the kindness feels so hard to accept when it feels one-sided but Jenny reminds me that it’s not one-sided and that there are times I’ve been there for her and expected nothing back. And that even now, visits aren’t meaningless or without joy. But still, it feels like I have little to offer to offer anyone right now. 

It feels like I’m always the one on the receiving end and never the one throwing the football.

Free-Write

Jenny and I do a free-write during our visit and we write to the quote, “Like a ship that took me through the wildest storm of all….” which is an excerpt from a beautiful piece of writing by Rainer Maria Rilke. Here’s some of what I wrote:

Sometimes I think routine sustains me. I don’t mean the tasks of daily living, I mean the machinery of life and the way the world wakes up each morning and at night slows down to rest. The way that being human throughout history hasn’t changed in essential ways. We make love, eat, create families, systems, and homes and sustain them. Sometimes are efforts are all external and we travel, or make a difference or make a mark but equally is important is the grinding of coffee, the showers, the feeding the dogs, the warm shower, and the yogurt, fruit, and toast – whatever ways we greet the world each morning.

The way we look for what is new, bright, and blooming. I’ve come to count on the consistency of momentum, the life force that does adjust, readjusting, calibrating and recalibrating and never skips trying.

Cancer hasn’t crushed me. It hasn’t made my spirit or my life small. If anything, I think and feel more expansively.

Will I be a cloud, someday, that floats about Kai’s head watching down and over her?
Will I join my ancestors who are on the other side?

When my friend Nadia was dying (from ovarian cancer), knowing she’d be leaving who she called her Sun (son) and Moon (husband), I ached for her. Loss is never fair but she was in her early 40’s with a young son (of 6 or 7). Life seems cruel to take a mother from a child and also to deprive that mother of being there to nurture and care for her child. Nadia got to the point when she knew she was dying. A bowel obstruction made it so she could not eat. She started to imagine the foods and feasts she could taste and host from the other side. She said she’s set the table for the rest of us, because we’ll all die, and so she will wait be there to greet us.

I said I pictured she and I together in heaven, looking at a washing-machine sized crystal ball that will let us watch our loved ones (the ultimate reality TV). She said, “I will go first and create our friendship circle where we can watch our loved ones,” but also, she said, “I’m not going to spend all of my focus on the people on earth when there are new things to do.”

I was astounded because while she was sad she was also curious and determined to fully explore the next world. Nadia was a neuroscientist but also a creative who believed in magic. To her, the afterlife wasn’t just a place to look back on this life which was all I could imagine.

“I’m floating in clouds of love and support these days,” she said in her last message to me. “It’s all miraculous,” she wrote. That was seven months ago and she gave me an example of dying that was not only sad, terrifying, or intense and for that I’ll be forever grateful.

March 2022

I ache. Sometimes it’s dull pain and sometimes it’s intense. Sometimes it’s sharp and stabbing. Sometimes, I feel a vague weariness that causes me to hunch forward, as though my head is too heavy for my neck, back, and trunk, as though my spine is no longer straight and solid. Sometimes it feels as though there’s invisible weights on my back, pushing it down and forward, and I recognize how feeble this makes me look and feel, how much it ages me. 

Mediation this morning is from the 10% happier app and the question is asked:

Can you be with what is with gentleness?

I try that. 

Can I notice and observe and see what happens? Can I not feel defeated and run to ibuprofen immediately though it’s fine when I need relief. Can I be with my body and all its experiences and can I regard myself and my symptoms as tenderly as I’d regard the pain of others? 

Can I get curious? Will it stay or get worse or will it pass? Does it have a schedule? Is there some natural cycle or is an intervention needed?

Last week I had horrendous stomach pains and almost went to the ER. Then I remembered that severe abdominal pain is a side effect of my treatment. I noticed that heat helped and went to the floral heating pad Savannah got me using her own money even though she’s a working college student. I noticed that the pain would move from left to right and up and down and was unlikely to be an organ. I reminded myself it’s discomfort from inflammation.

Discomfort seems less intense than pain. While I have pain killers on hand in case it gets bad, I waited to see if I needed them. Somehow, remembering the cause brings enough relief for now, and remembering it’s normal for now helps me to cope.

I spend a lot of time tending to my body. Cancer has required this of me. Cancer treatment has made this my reality. I used to dig deep, to the bone marrow, and seemed to have an endless supply of keep going. Now, I sometimes run on empty. Now, I sometimes can’t run or walk at all.

Last night, I woke with middle-of-the night nausea. I didn’t have my puke bowl by the bed because I’ve not been nearly as sick as I was in the beginning. But this night, my stomach is off. 

I settle back into the bed, into my skin, into my sleepy self. I listen to guided imagery and try to find places in my body to rest, pockets of peace, and this helps. 

There are always places where I am pain-free if I don’t focus only on what ails me. This takes practice, guidance, and prompting because my tendency is to panic when in pain – sure it will not pass and afraid it might get worse. But this hardly ever happens. I’m shocked at what I can bear and “be with” as the meditation app says.

I told my cousin Jenny that my life and heart do not feel shrunk or caved in or crushed by cancer. I tell her PTSD was much harder for me to manage than cancer. Yes, I get distressed, of course, but in many ways, my life feels wider and more expansive. I am not rushed to do or be or accomplish. Much of my time is spent managing things (schedules, pain, and my body), but when you’ve been deep in survival mode, to manage means to have some respite and with respite, there are pockets for peace and windows open to joy. When one has PTSD, it can feel as though survival mode lasts for decades and unlike cancer, people are afraid of trauma whereas most people treat a cancer diagnosis with compassion. 

I am tired and get sick of feeling unwell, but I am grateful to know I’m loved and cared about and I can feel all the love and support and know I’m lucky.

Sometimes I can focus all of my effort on gratitude and joy-stalking. But some days my goals are modest. Sometimes, all I can do is stalk comfort and bide my time til the intensity of symptoms pass. When they do, I practice self-acceptance and self-nurture, and try not to ignore the epic peace that comes with relief.

March 2022

Ellison 210 . It’s harder to walk from the train to the main building. It’s harder to schlep from Elison to Yawkey. It’s not cancer but the treatment making my red counts low. But my heart rate is not as high as it used to be when I walked. 

I qualified for the Ride because of my disability. The guy in the car noticed my bag, “Miss Diagnosed,” and asked what it meant.

My cancer was misdiagnosed I said. My friend Heidi got me the bag. 

I never had cancer, he said. 

I hope you never do, I said.

I had friends that had cancer, he said, but they all died. They didn’t survive. 

I don’t know what to say. I think to File this under things never to say to someone with cancer. 

I text my friends. One of them laughs with me and the other is enraged because she thinks it’s the driver who was insensitive til I explain it was another passenger with his disability.

Once at Elison, I waited for an hour. The place is packed. Every seat is full and social distancing isn’t possible. When I get to the interventional radiology room my lung is tapped. Instead of fluid, they drain pus. 

“Do you want to see it?’ the doctor asks.

“Sure,” I say, and instead of what looks like a jug of beer he holds up a giant needle filled with gray grossness. They explain I’ll need to start a course of antibiotics because sometimes the tap can stir up the bacteria and it can spread to the bloodstream so they want to prevent an infection. They tell me to go to the ER if I get chills or a fever. 

They tell me the pus sometimes doesn’t stay gone with one tap and that I might need to be admitted, and get a chest tube, to drain the pus over several hours while supervised.

Maybe save that info for people only if and when the pus comes back I think because now I’m leaving my procedure worried.

The next day, I’ll be back for treatment but I don’t know if I’ll be there as in or outpatient. It depends on what my clinical team says, and what the trial sponsor says about my possible infection. 

Dr. Penson calls from the airport on his return flight, asks if I saw the pus, and explains that I’ll need an antibiotic immediately. He says that he will ask if the infection can allow me to delay treatment. 

Later I will learn that the infection is staph and that the first round of antibiotics didn’t work and I’ll need a new and stronger round. 

Great.