Not Dead Yet!: Marking my 2-year anniversaries

On Sunday I marked my two-year “cancerversary” of my diagnosis and on Tuesday a member of the support group I co-founded (for young women who are stage 4) died. Like me, she had triple-negative breast cancer. Like me, she was diagnosed stage 4 two years ago. Like me, she had exhausted several types of treatment (because triple-negative is a beast) and was looking for the one that would work. She asked me about Saci (Sassy!) and proposed trying it to her doctor less than a week before she died. Nine days before she passed she joined our Sunday cancer yoga group from bed at the hospital to join our meditation exercises. Like me, she remained confident and positive and absolutely refused to give up hope. (Like me, she also wore her hair purple sometimes.)

There were many things that are unlike about us too. She had two teenage children who now don’t have their mother. She was twelve years older than me and had had Hodgkin’s before she had breast cancer--even worse luck than mine, to triumph over one cancer only to get this diagnosis. Unlike me, she wasn’t strong enough for Saci, the only targeted triple-negative line of treatment, because her body had reacted badly to immunotherapy. She was in the hospital for two weeks with somewhat mysterious symptoms all of which added up to her body shutting down. On Saturday she went home with her family in hospice care. 2 days later she was gone.

It’s not usual for things to go so fast. Typically, doctors, patients, and family members all have some advance warning and patients spend a solid amount of time in hospice care. I am sure that people will ask me why it went that way for her. I’m asking myself why too, since it is so shocking and so entirely unfair. The fact that it can happen that way at all is frightening to me as a fellow patient since it’s the scenario of nightmares. That really could someday be me. No one ever wants to think that--and I cannot live my life focused on it either--but it has to be acknowledged as a possibility. 

Today, January 28th, is the 2-year anniversary of my stage 4 diagnosis. In a way, it feels more significant than my initial cancer news. I had four days being horrified, but thinking that I would get through this as a phase in my life. It would be terrible--I’d have a double mastectomy, scorched-earth chemo, radiation, anything to get rid of the cancer--but then it would be done. On the Monday following my first set of CT scans I learned that that was not true. My lungs were full of tumors. (Later, after lots of waiting, MRIs and biopsies, I'd find that my lymph nodes, spine, and liver were affected too. I still have tumors in all those locations, but no new ones.) I wrote a description of getting that news in an email to a friend over the summer, after I had read Anne Boyer’s "The Undying”:

“The worst part about the lung tumors for me was that my dad had gotten a very early flight and I learned the news while he was in the air. My mom told me we could not text or tell him on the phone, that he would need to be with us both. So I drove to Newark straight from the doctor's office. It was in the teens outside and windy as we slogged to the baggage area where we were to meet. I saw my dad in his warmest and ugliest puffy orange down jacket, looking small in it, forlorn and horribly vulnerable. I fell into his arms, thinking at least that airports were such horrible places, so impersonal and banal, that no one would look twice. 'It's in my lungs,' I said into his shoulder so that I would not have to see his face. I was crying into the jacket that somehow smelled of winter cold even though he had been inside for hours. 'Please, Daddy. Fix it, please.' I spoke like a child because, on some very deep level, I think I really did still believe that my father could fix anything. I was embarrassed, though, and so I tried to stem my tears as he put his big hand on the back of my head and said, 'Oh sweetie, we'll get through this. We will.' I knew that really he could do nothing--and that this was his nightmare of powerlessness--and so I sniffed and blinked and I did not let myself cry again until June.”

Two years later this moment seems as if it just happened. The impact of my diagnosis on everyone dear to me, and especially my parents, is one of the worst things about it for me. We all know that there’s only so much “better” I can get, with the current science, and we’re all playing for time while the research moves forward towards something better, something that would make this a treatable chronic condition. I go back and forth, emotionally, on how likely I think that is and how good my position is for the future. Right now, comparing myself to the group member who died, I feel relatively fortunate, even as chemo exhausts me, I lose every scrap of hair that was ever on my body, and I spend half of my days being almost unable to eat from nausea and loss of taste. I feel glad that I was able to get Saci, that my body has so far stood up to the ceaseless trials I have put it through, with four treatments and surgery (and full-time work and living alone etc. etc.). I feel strong, not scared, even as I feel the emotional toll of terrible loneliness from covid isolation, winter, and carrying a sick body through my days alone.

I do not love the “fight” metaphor because so much of having an illness is completely out of your control and I never want to take myself (or anyone else) to task for “losing.” And so instead I will praise my body for enduring. I will praise myself for my enduring also, in both an emotional and physical way. I checked back in on how I was feeling as this anniversary approached last year and was pleased to see how much better I feel about it now, partly as a function of being in a treatment that is (likely) keeping me stable rather than in the midst of choosing another new one. Here is what I wrote back to my group of friends in November 2019, the run up to the one-year mark:

“I’m feeling like I can’t plan and don’t want to celebrate, like I can’t perform “fine” for the people in my life to spare them from the pain I’m causing by not doing better and feeling horrible about it. Perhaps it would help if I let them know that they didn’t need to perform “fine” for me? I understand the desire to protect me from the obligation to take care of them and appreciate it. But sometimes it can feel like I’m the only one experiencing anger or grief or pain, though I know I’m not. Feeling so isolated in my emotional response provides no catharsis for it. Compassion and sympathy function on the notion of “fellow feeling.” If you’re just out here, feeling by yourself, you can’t expect any comfort. As always, I think of the moment in the Iliad when Priam and Achilles cry together over dead Hector. Grief (and you can grieve for many things aside from a death) is something explicitly to be shared.”

So I guess I’ve shared it here. I can do that. And I can do another thing, which is to tell you I love you. People don’t really say it enough and reserve it too entirely for romantic contexts. It’s weird--it’s not like we are wartime rationing love! And every time anyone says it to me it helps. It’s an affirmation that I am integral in some way to people’s lives which, in a society that so greatly valorizes marriage/partnership and children, is something I can be in doubt about.”

There are some things I like here, though, and that I would now like to reiterate and invite you, my far-flung friends, to do for my 2-year milestone. Never has the notion of “fellow feeling” in times of grief and depression hit harder or been more important than during covid. In a way, the nation (or even world) was forced into much the same position, emotionally and practically, that my cancer put me in. People are isolated, unable to perform “fine” and wondering if other people feel the same way, or even if any of us can take care of each other at all. I am here to tell you that you can. Maybe not immediately but--sooner than you think--you can. Emotional reserves may be low but reaching out to support someone else can actually replenish them. You do not have to feel alone, or to feel, alone.

And for me, for this milestone and for the cancer-related depression that I certainly do have, I’d like to invite you to help me, so that I can do the same for you. I invite you to write something about how this milestone feels for you (either about me or not), how it relates to all the other insane things going on in the world or with you (not about me at all), how you felt on the original day when I shared my stage 4 diagnosis (definitely about me)--really anything that is on your mind or in your heart.

“Oh great,” you may think, “the English PhD has asked us to do homework!”. But no! It's up to you what you do. Write in whatever form you want, however long, even anonymously. And if you do I will write you back! Not with grades or comments, but with something to connect to what you shared. It is a way to create fellow-feeling; to open up, connect, heal. With me, yes, but also as the group of extraordinary people who have gone with me so far on this hard road. It’s a very different proposition to support someone through time-limited treatment with a good outcome than it is to sign on for whatever comes next. You are all, truly, pretty extraordinary. 

Anyone who wants to send a note or reflection can email me or drop a file or post in this Google drive folder. Like I said, feel free to share whatever and do it anonymously if you’d rather. You can also message me on Twitter. (I'm taking a chance with open DMs for now...we'll see if that needs to change.) 

I am grateful for all of you every day, but especially today.

Love,
Rebecca

p.s. The title of this post refers to the cinematic classic "Monty Python and the Holy Grail," a film my high school self and friends loved. They, along with other wonderful folks. gave me a "cancerversary" cake with "Not dead yet!" on it this Sunday.