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

April 2022

How many days did you think you might die during the trial?” my friend Kathy asked when we sat at a smoothie place seeing each other for the first time socially, in public, in months.

Too many,” I said. “It was intense. The only other time I felt that way was at the end of my first round of carbo/taxol chemo. That’s when I started to wonder if the treatment might kill me before the cancer. I told her it took all of my energy just to be a body, to be a person tending to my body, and I’d never known before how consuming that can be.

April 2022

In the middle of the trial, my partner moved out. I was too sick to even process the break-up at the time and maybe that was a blessing because now the pain of separation is not as fresh.

When people asked me why or what happened I say:

“He bought a condo in Portland and moved,” or “The stress of our current situation was too much for the relationship.”

Both things are true.

And while I have lots of thoughts, feelings, and opinions about our situation, as he does, it’s not necessary to go into the details.

The reality is simple. We didn’t survive. He will live and work in Maine and Canada most of the year. I will remain in MA where my friends and family are, where my daughter goes to school, where we have a home, and where I get treatment.

Not all relationships survive and cancer during COVID was more of a mountain than we could climb.

This doesn’t mean we didn’t care about each other, love one another, or commit to each other. We did. And when we did, we thought it would be for as long as we have. We thought we would never again waste energy or trivial issues or forget how precious each and every moment is.

And yet, what we intended, planned, and promised was more than what we were capable of doing.

In the end, I realized I couldn’t fight for the relationship and for my life. I I was getting too tired, stressed, and stretched. I wasn’t strong enough and I had to prioritize focusing on my health.

April 2022

I track my CA125 obsessively. It’s impossible not to because it’s one of the few blood tests that can track cancer progression. It’s not always a reliable marker for diagnosing ovarian cancer (it can be normal when cancer is present and high when cancer is not) but for those already diagnosed, it’s fairly reliable in determining how much cancer is in at a given moment and how one is responding or not responding to a particular treatment. For me, it’s been a reliable marker. And so, when it stabilizes or increases I worry. But, it’s not the only thing that is tracked. According to my oncologist, it’s three things that matter:

1. CA-125
2. Scans to show if there’s been shrinking or progression, changes, etc. 
3. How I feel (and what lab tests show)

My oncologist says that the bi-specific antibody immunotherapy I’m on binds to CA-125 so it’s a bit tricky to reference alone, and might artificially decrease CA-125 when first administered (why scans are so important… 

My CA-125 didn’t jump a lot and it’s still A LOT lower than it was – BUT – for the first time since this new treatment, it didn’t go down. It stabilized as opposed to going down by 50 or 60% which had been the trend.

In the land of CA-125, it’s when the CA125 doubles or goes up for 3 to 4 months that we get worried. Mine went from 138 to 141 in one week. As a cancer patient, I don’t like any news that isn’t good. It makes me worry and wonder what is next.

I’m just getting adjusted to this treatment. The latest treatment has gone from brutal, to difficult, to tolerable, to I-feel pretty-decent. 

The truth is – I don’t have control over what my cancer or my CA-125 does but I do have some control, depending on how I feel, what I do and where I put my focus, and how I spend whatever time I do have (just like everyone else). 

Yesterday, I went to the gym.

I did 20 minutes on the elliptical and two minutes in I was already over it, wanting to quit, and needing to tell myself, “I can do this. I can do this. I can do this.” And I wanted to quit when I had twelve minutes left, and also when I had two left but I did all twenty. It felt like I completed a marathon. 

I felt normal, decent, and alive. I was well enough to take the stairs up to the second floor, things I used to do without thinking.

On my way home, my sister-in-law asked if I wanted to walk the dogs and somehow I still had energy and said yes. 

I don’t praise myself on high-energy days so why do I berate myself when I have no energy? Last Tuesday I woke up at 5 am and by noon was napping on the couch for five hours. I woke for two hours and then went to bed and slept for nine more. Who does that?

I felt bad and had to keep reminding myself I was neglecting no one (not even the dog who had been out). I was simply listening to my body. 

My daughter sent me a text reminding me it was our cat Lizzie’s 10th birthday. 

I remember the moment we got Lizzy. Kai was only nine and home from school so she joined me and my ex at the lawyer’s where we wrapped up divorce paperwork and then went to lunch. As we drove home, Kai saw the pet store and asked if we could go in. 

“Sure,” I said. 

We sometimes went to pet stores to pretend we were shopping just to let the kittens or puppies out of the cages for a while. 

Today, it was the pet store owner’s cat who had kittens, and when my daughter asked, “Can we get one?” I said, “Why not?” It was the moment I realized I was the adult decision maker and didn’t need to check in with anyone before making the call. We went home with a kitty we had not planned to get. 

Now she is 10 and my daughter is 19. 

I want to cry because of the time that has passed and because I’m not promised another ten years. I’m hoping I make it to 60. If I make it to 60 Kai will be 25 and while that’s still too young to lose a parent it’s better than losing a parent at 16 which is how old she was when I was diagnosed. 

I’d love even more time but if I make it to 60, which is 8 years post-diagnosis, I’ll be in the long-term survivor club for this particular disease. More than half of us don’t get five years after diagnosis and 20% of us die within twelve months of being diagnosed. 

So getting to meet Kai on Newbury Street where I take her and her roommates out for a late lunch is a luxury. I’m eager to get to know her roommates the way you can when sharing a meal and that is difficult to do when saying only hi/bye and exchanging pleasantries on FaceTime. This afternoon I will not be a cancer patient. I’ll be just a mom, another anonymous middle-aged patron eating with her daughter and friends. 

April 2022

Yesterday was one of the days I live for. Started out with writing group, then a great walk with a friend and our dogs, and then a late lunch in Boston with my daughter and her roommates. IT WAS SO MUCH FUN. I am still not 100% but had more energy than usual and I even went to the gym twice this week for an easy yoga class and 20 min. on the elliptical. When my Nana had cancer, my aunt was her primary caretaker but I helped. And I remember reading Bernie Siegel books like (Love, Medicine, & Miracles) and learning about exceptional cancer patients and wanting my Nana to be one.

I remember my Nana saying, “I don’t want to be an exceptional patient. I just want to live the same life I was living for longer.” I didn’t understand what she meant at the time as though a life-threatening diagnosis (also ovarian cancer) SHOULD change a person.

But today, I was thinking, “I get it. I totally get it.” I didn’t/don’t want some new and different life or twenty trips around the world (though maybe one or two). What actually felt perfect, wonderful, and amazing was just to be enjoying a regular day of living, creativity, movement, friendship, and getting to spend time with my daughter, my favorite human being and get to know her friends better.

I know I blog about the trial and cancer, and that will continue but yesterday was a long day of ordinary/extraordinary bliss and how aware I was and am of what a gift it is. I’ll do as many treatments as I can possibly endure for days such as these ones. And how lucky am I to have so much love, support, and joy in my life because my ordinary and regular life is magnificent.

April 2022

It’s April 13th and I started this trial 2 months ago. To get an idea of how different my life and schedule in April is, compared to March (and March), just look at these two appointment schedules below. This isn’t my regular calendar it’s my calendar for medical appointments as Mass General and doesn’t even include the unplanned visits (like for removing the PleurX and getting a blood transfusion).

• In April, I have no more planned overnights or eye appointments or echocardiograms.
• In April, I’ve gone from a four-hour infusion schedule down to 1/2 hour (it’s reduced by an hour each week and once down to an hour we can move to a 1/2 hour infusion) which makes for a much shorter treatment day.
• There’s no need for packing up food and clothes which means I don’t have to ask others to take care of my pets.
• There’s no 4:45 am wake-up for a 7a.m. infusion or asking people for nearly as many rides because now I have access to The Ride as well as a more predicatable schedule.
• I’m off all but the nausea pre-meds on infusion day (though I still take Singulair and Zyrtec for three mornings before the infusion).
• I’ve not had a fever in weeks and while I wouldn’t mind one once-a-week for the anti-cancer effect that fevers can have, being fever free means my staph infection is probably gone (after two rounds of antibiotics).
• My yeast infection (from said antibiotics) is also gone.
• My PleurX is out so I can go back to swimming and can do yoga more easily.
• My appetite is back and I can eat, with joy, without pain or vomiting, and I’m gaining back the weight I lost.
• My red counts are improving and while I’m still moderately anemic I’m no longer severely anemic which means I have a little more pep in my step.
• My liver counts have remained normal ever since I stopped taking Tylenol.
• I can sleep, relax, and almost never need to take ibuprofen for the aches and pains I was having earlier in treatment. Sleeping better makes EVERYTHING better!
• I can stay awake and alert longer (though I still sleep 10 or more hours a night).
• I’m eating lots of foods with pre-biotics to try to help my microbiome recover from the antibiotics.
• I’m back to weekly writing group.
• I’m socializing.
• I’m starting to feel good driving later in the day and can even drive TO some of my loved ones for a change.

I’m starting to pay attention to the news and what’s happening in the world. I can now read updates about the war in Ukraine, could follow the confirmation of Ketanji Brown Jackson who will be sitting on the Supreme Court, and have seen the clip of Chris Rock being smacked by Will Smith at the Oscars. I’ve learned about the Amazon warehouse that was unionized and have even been startled by the diagnosis of aphasia announced by the family of Bruce Willis which is a reminder that good fortune and money can’t protect people from health challenges.

When my world is consumed by cancer treatment, and my own worried, it’s good to be reconnect with the joys and sorrows of the wider world. I am reminded that there are so many people in the world who are suffering enormously and unjustly in horrible conditions and circumstances and also, always, that there is progress too and that history is being made at the same time. Brown Jackson is the first Black women ever to become a Supreme Court justice.

I’m grateful I’m thinking about more than surviving and enduring this trial and now feel that I’m on a routine treatment schedule. I hope I continue to respond to this treatment, or even to remain stable, for months and months and months. My daughter will be home from college next month and I hope to enjoy the summer as much as possible, to return phone calls, texts, and emails and to be more present and attentive for others as well as grateful for the all of the love I receive.

I won’t post weekly updates but will share every month or two as scans are done and my labs are tracked because I’m mostly back to normal (or as normal as it gets for being actively treated for advanced cancer.

I’ll close with a beautiful excerpt from the poet David Whyte. It’s from his book Still Possible which was a gift from my dear friend and soul-sister, Kathy. The title of the poem is My Courageous Life. Here are a few stanzas:

“My courageous life
wants to stop
being ahead of me
so that it can lie
down and rest
deep inside the body
it has been
calling on

My courageous life
wants to be
my foundation,
showing me
day after day
even against my will,

how to undo myself,
how to surpass myself,
how to laugh as a I go
in the face
of danger,
how to invite
the right
kind
of perilous
love,
how to find
a way
to die
of generosity.”