I Can and I Can’t

AUGUST 30, 2020

My friend Dikla called me last week. She tells me she’s now been living with MBC (metastatic breast cancer) for 18 years.  And then laughing she says, “my cancer is old enough to vote!” The two of us crack up at this irony. Dikla is one of my Sheroes. And a dear friend. And an inspiration.

We met 13 years ago, when I walked into a UCLA cancer support group. I could barely find my way to the room on the top floor of that 300 building. Hyperventilating, with red eyes from non-stop crying, I had just been diagnosed with Stage 4 of 4, terminal! metastatic breast cancer (MBC).  Seven years after finishing treatment for early stage breast cancer!  (Nope, no family history. Yes, I found the lump myself. No, it wasn’t in my lymph-nodes. No braca gene.  Yes, I was supposed to be “cured”). 

Walking into that Living Beyond Limits group, my head was spinning.  Celeste, our facilitator, was one of the loveliest women I’ve ever met. She is a pillar of grace and kindness. And love and support.  She still facilitates that support group, although now via zoom.

13 years ago, that group was my lifeline. I met Dikla that first week. Plus, many others—probably 10 of us around the table. Month after month I realized many of the original women had started to die. It was heavy, and it was freaking me out.

I said to Dikla, pretty soon we will be the last girls standing—maybe we should stay away from group for a while. We laughed, but the fear, sadness and heartache were real.  We continued to show up.

Every three weeks I’m supposed to have treatment. An infusion. Because of Covid, I have to go alone. Thankfully I love my nursing team and because I’ve been in treatment for so many years I feel oddly at home there.  This new drug, called Enhertu, which to me sounds like I-hurt-you, is a cutting-edge treatment for heavily pre-treated people with MBC.   What is it, you ask? Enhertu is an ADC (antibody-drug conjugate) targeted therapy. The combination of the topoisomerase I inhibitor and the linking compound is called deruxtecan. The linking compound attaches (conjugates) the fam-trastuzumab to the topoisomerase I inhibitor chemotherapy. Get it? Well, I do. 

Most of us living with MBC have an honorary PhD in Oncology.  I certainly do.  It took me about 3-4 hours of dedicated nightly reading, researching, watching lectures, listening to science panels, and looking words up, one by one by one by one.  After three years, I was conversant.  By year four, I could weigh in on my own treatment plan and suggest outside the box thinking on drug combos to my team.  I was treated as a colleague but most important, I was respected as an expert on my own case. 

Every three weeks when it’s go-day, I think “I can’t do it again”.
I can and I can’t.
I’m the little engine who obsesses.

It’s been eight months of every three weeks, I can and I can’t.
The little engine who chemos. 

My doctor has done two dose reductions to try to help mitigate my side-effucks.  By the way, I have doubled-down on calling side-effects side-effucks. This was a term I recently heard from a new Twitter friend, Silke. When I attributed it to her, there was a long thread of metastatic breast cancer survivors attributing it to another person and another person and another person. Whomever the original clever-creator, it is my go forward term from now on.

I can and I can’t.
I don’t know if I can take another cycle. 

It’s hard to describe the days following chemotherapy. I feel poisoned. Rotten inside. Like I drank battery acid.  Nauseous.  I have no shortage of meds for my meds.  Steroids to help the nausea.  Anti-nausea pre and post meds. It’s so much medicine, but it’s the only way through. 

This drug is so tough. We have a private Facebook group for people on this regime.  In December 2019, when the group was started, we had about 50 members.  Now we are over 250.  That is still a tiny amount of people for an FDA approved regime.  Usually a chemo-specific Facebook group will have membership in the thousands. 

I have a handful of friends who are still on the original clinical trial for this drug.  Still enduring arduous scans every 6 weeks, tons of blood work, all day observations, and rigid rules of the trial.  These friends have made it possible for me and others to have access to this new drug.  And they’ve also managed to stay on this regime for two years and counting.  They are well past cycle #34. I just finished cycle #11. 

I can and I can’t.

I’ve used my time this summer to become involved in two different initiatives to make life better for people living with MBC. One of the initiatives has to do with patient centered dosing, and how people with MBC should be having conversations with their oncologists PRIOR to starting a new regime, to determine the appropriate starting dose based upon their unique case.  We have gathered data from over 1200 people living with MBC and will present our findings later this year at an annual prestigious conference. 

I can and I can’t.

Another initiative has to do with making clinical trials more accessible for patients living with breast cancer brain mets. When breast cancer metastasizes, or spreads to other organs, like the lungs, or bones, or brain, it is still breast cancer.  It doesn’t turn into lung cancer, or bone cancer.  The same is true for when breast cancer spreads into the brain.  Commonly called mets (metastasis) brain mets are tricky fuckers to treat. 

Patients with Brain Mets, LMD (Leptomeningeal disease) and CNS (central nervous system) mets have a have a much worse prognosis. We’re harder to treat.  Therefore, many clinical trials hesitate to add in this population because it can make their trial results look worse. Yes. Read that again.

I can and I can’t. 

I am working with a team of metastatic breast cancer patients, and some big Pharma partners, and some fabulous allies, under an alliance, to insist that big Pharma include people with Breast Cancer Brain Mets, LMD, and CNS disease in their clinical trials, early on. To give us a fair chance to live. Sharing our stories is the best way for this to happen.  Oftentimes scientists and researchers do not have many opportunities to interact with actual people living with MBC.  There is a disconnect.  Our first step was to share our stories via zoom, to create connection.  It was an inspired meeting. 

I can and I can’t.

Today I feel shaky, weak, stomach pain, short of breath. I’ve been running a fever, have a cough.  All typical side-effucks of Enhertu.  I feel Scared. Anxious. Alone.  My friends call and they check on me, but I’m not well enough to sit outside today. What would be great, is to have people in my background. In my physical space. The sounds of life in the background of my house, while I’m resting.  No can do…Covid has messed that up.

I click online and see some of my beautiful advocacy friends working hard.  They are busy raising money, pod-casting, sharing their stories, promoting diversity, amplifying Black Lives Matter, teaching, organizing conferences, networking, giving support, encouragement, sharing life photos, kids visiting, sharing links - sharing vital information that may be lifesaving in helping others live a bit longer and a bit better.  I see an online community working their asses off at being Brave Thrivers. Everyone living with MBC knows how this will end.  There is no cure.  There is no winning.

These friends deeply inspire me. I draw so much strength from them. More than they realize.  Their ability to push through, inspires me to push through. All of us fighting to keep a toehold while reaching to pull someone up along with us. Keep moving forward.  This MBC community has become my extended family.

I can’t and I can.