Clinical Trial Possibility / Medical Update & Free-Writing

A week ago today I was supposed to start my third round of treatment for my second #ovariancancer recurrence. It was going to be a chemo infusion or pill and Avastin. But, a few days before my appointment I got a call from my oncologist, Dr. P, who told me there is an opening in the clinical trial we had discussed a few months earlier. It’s called “REGN4018 (A MUC16xCD3 Bispecific Antibody) Administered in Combination with Cemoplimab in Patients with Recurrent Ovarian Cancer.” 

I’m nervous and excited. I’m excited to have a break from the traditional course of treatment which, even when they slow or stabilize cancer growth don’t offer any hope for a cure or even a response longer than a few months (at least for me).  

Some patients get long breaks between treatments and some don’t respond to treatment at all. I’m not in either of those camps but somewhere in the middle in the land of it could be better and also in the land of it could be worse.

Anyhow, today begins a series of tests and procedures I must do before I am cleared for and confirmed eligible for the trial. Here’s the list of what must be done:

• CHEST PORT SURGERY (to drain fluid around my lung. Getting “tapped” to remove fluid will make me ineligible for the trial so this surgery is required)
• MRI / BRAIN 
• LABS
• CHEST X-RAY
• PET CT
• OPHTHALMIC EXAM
• EKG
• ECHOCARDIOGRAM

If my pleural effusion (fluid around the lung) isn’t too big, and if I don’t have too much fluid around my heart (pericardial effusion) and no other signs of heart disease, I should be eligible. If I don’t have cancer in my brain or central nervous system, I should be able to get into the trial. If I do, I will be devastated and will need to figure out what to do about that – BUT – one thing at a time…

So, I remain cautiously optimistic and remind myself to remain flexible and to retain hopefulness no matter what happens. Sometimes I’m able to do that with ease and other times I fall flat and hard on my face. Luckily, I have a ton of people who love and support me no matter what shape I show up in (and I’m so grateful for that).

If I get into the trial, I will get weekly infusions at MGH which require one to two days of hospital admissions for the first month, and then, if I tolerate the drugs, just an overnight for a few infusions. Eventually, if the drugs agree with me (I can tolerate the side effects) AND my cancer is responsive, I’ll get outpatient infusions for as long as they work (please visualize this happening for a shockingly long time). 

I’ll blog as often as I can when I have energy and time. It’s a pretty intense protocol and reading things like this can be daunting: 

“This is the first time that REGN4018 will be given to humans.” GULP.

However, that fear is also the cause for excitement because, as the saying goes, “for something to change SOMETHING has to change,” and some of the patients to date have responded, either partially or in one case, for over a year which is a very long time in my world. So, given how poor the standard results to date have been it’s necessary to do something new, novel, and different. 

Plus, at this point, every drug combination comes with serious risks, and not getting treatment comes with serious complications (like more fluid around the lung and heart). So, I’m now in the land of making the best possible choices given what is available to me – which is quite limited. 

I still have a naturopathic doctor, and I’m taking supplements and complementary treatments, as well as staying active and eating relatively clean. I don’t know how life-saving these things are but I do believe they have all helped my quality of life a lot because, despite all the treatments and living with cancer, I’ve been able to remain independent, mobile, and mostly pain-free. 

My naturopath believes I’ve been able to bounce back after chemo (meaning red and white counts resuming to normalish quite quickly) because of the supplements, alternative treatments, and exercise. I choose to believe him. But someday, I hope there are far less toxic ways to treat #ovariancancer and that those are standard and effective. 

And, I keep reminding myself that I can live well with incurable cancer. To that end, I’ve been joining free-writing circles, going swimming, and socializing more even if it’s only online or on the phone.  

I have friends who had this disease, were younger, and had younger kids. They did not get years as I have had. I remember, and love, and honor them. When I get overwhelmed, exhausted, or nervous I remind myself that I am still here, still alive, and still have an amazing life, and time for making memories. Not everyone is so lucky. A high school friend wrote to me yesterday to thank me for my advocacy because she lost a close friend who lived less than a year after being diagnosed. This is tragic. 

O.k., that’s it for the medical update. Below, I’m sharing some free-writing I did last week. Free-writing is healing and helpful and whenever I do it I feel more calm, centered, and connected to others. These are always done in a group setting and we write in a stream of consciousness style without worrying about grammar, spelling, or even how much sense our words are making. Here are a few examples of what emerges from that writing for me. If you want to try free-writing just write these prompts at the top of a piece of paper (or online) and write without stopping for five to ten minutes.

Please note Free-Writing that came from prompts from the Women’s Writing Circle with Jen Minotti & Soul Writing with Joy Reichart which were both last week. 

Women’s Writing Circle Prompt: This Year I’m Going to Put Down

Waiting. 

I no longer wait for optimal conditions, for projects to be done, for me to be in a better, stronger, healthier, or happier place. 

I no longer wait to love myself, to pause, to rest, to invite joy to melt in and on my skin, to bake it into my being. 

I’m not fighting cancer. I’m living with cancer. 

I’m not dying, I’m living aware of my shorter timeline. 

There are cancer perks, I tell my friend Beth, and it’s not just the free Y membership for people with cancer and our families, not just the way the TRide will do picks up and drop-offs, or the way all who love me let me know why and how much, show me with gifts, texts, warmth, and love. 

This year I put down knowing if I will survive or not, how much if, at all, I might suffer. This feels epic and triumphant.

I’ve changed. Last Sat. I was supposed to start two new drug combinations. Old me would have researched both, would have prepared for days if not weeks, or maybe months in advance. Not now. 

“I’m just enjoying the chemo break,” I tell my loved ones. “I’ll learn about the drugs when I go to the hospital. There’s enough time to do research when in the waiting room.

When the oncology nurse used to say, “Leave the worrying to us,” I’d say, “Not a chance,” or even, “Well, that’s not very wise since your approach only cures 15% of people like me.”

But now I do have a doctor and a naturopath and a nurse I trust. I can leave my fears with them (most of the time). 

Last week, I was rewarded, when my oncologist called on Weds. 

“A spot opened in a clinical trial,” he said.

Plot twist, “ I said to my friend Beth who joins me at all my chemo sessions. 

I was so glad I’d not gone down the rabbit holes. I might have missed rolling in the grass.

1/19/22

Women’s Writing Circle Prompt: This year, I will remember to hold…

The pink heart Su got me as a healing stone

The heart of my daughter as she finds her way in the city, as a young adult, untethered to my side but still tethered to my soul. When I visited her for the first time in the city, she was on a street she knew well that I had never been on. This is one of those moments when our roles flipped. She walked on the sidewalk at ease, familiar with the stores, the people, and the hustle-bustle. I do not love the city the way she does but I love her and her love of it. 

Why can’t I love all people as unconditionally as I love my daughter? Never have I looked at her and thought, “I wish she was more x, less y.” Always, my job has been to discover who she is and to hope she’ll show and share that with me without self-consciousness. What if I could love myself like this? 

Soul-Writing Prompt: Refusing the call

I’m pretty o.k. diving into the deep end these days but it wasn’t always that way. 

Today, I went to the pool, even though it was below zero with the wind chill. Once in the water, I am warm. I can layer up to drive and get to the gym and layer down to get ready for the pool. I sit at the edge of the lap lane and let my body slip into the slightly heated water. I let myself submerge without fear. I don’t care that I don’t have my glasses on and that I can’t see anything. I don’t care that I am in what looks like a wrestling outfit – a bathing suit that goes to my knees. It feels too good to stretch and swim and move freely. I don’t let worries about cellulite, flab, or bruised shins keep me from the warmth. 

I wish I knew how to differentiate between pain and suffering when I was younger. 

I wish I understood the release that can come with surrender. 

“Do you pray these days?” My friend Kathy asks me. 

“Don’t push it I say,” and we laugh. I say I’m open to prayers but don’t yet ask for help, support, or divine guidance, per se. 

“I feel like free-writing is a form of prayer,” she says, noting how it helps her to connect to guidance from goddesses or spirit. “It feels good to return to longing,” she says.

We speak of Rumi’s Love Dog poem, how the guy is calling out Allah, Allah, and someone says, “Why do you keep calling out,” and the man says that the calling out, the longing IS the returned prayer because the attempt at sacred connection is sacred.

That I get. That I can do. But I’m less clear on who or what or if anything or anyone answers. Still, I know it matters to be open, curious, and sincere. I know, when I’m able to be open, curious, and sincere everything is better. 

Sometimes I’m so stuck though in habit, in anger, in my default mode. Sometimes pain or fear will grip and shrimp me, compress and test me, make my intestines turn in and on themselves, make me hold my breath, make me clamp down and resist. 

Sometimes, I forget that I can relax and relax, and when I think I can’t relax anymore I can relax a little deeper. This is what age has taught me – not that I can relax and surrender more, but just as with writing, I must be prompted to do so and must prompt myself regularly. I can’t, in fact, always trust myself to remember. I can’t in fact bring myself to my best head or heart or even health space. I need to be prompted by others. 

One day, I have a walkie-talkie buddy.

One day, my besties and I free-write before 9 a.m. 

One day, I took a yoga class.

Every day, almost without fail, I swim or walk. 

I need to prompt myself routinely. 

And even though I don’t pray as much as my friend Kathy does, I don’t go to war with reality or fight facts anymore. I don’t waste energy resisting what is in my face, lap, and life. 

I tune in more to moments of peace, moments of bliss, seconds of serenity where something can move or shift in my body or my psyche. 

Unfortunately, pain is sometimes an anchor that stops me. Sometimes it can pull me all the way in and under. I’m trying to let myself sink at those times rather than live in dread, fear, and resistance. I’m not quite there yet but I’m finding my way.