A long time passing

And so the winter passed and the writing ceased. I spent time in my body, which seems to me to be slowly failing as I try one medicine after another. I got kicked out of a clinical trial when the cancer progressed right away. I tried another clinical trial medicine that dragged my blood pressure into the basement. I had back surgery again. I got a port. I dug deep into my body and it was not a place of light. Some of you may have noticed I stopped consistently responding to texts--a flurry one day and then the silence of a snowfall the next. 

I got a little cynical, which was not attractive. "Oohh, a clinical trial," people would exclaim excitedly. As if a clinical trial was good news. And I thought of all the mice who took the medicine before I got the nod. These are phase one trials. Of course, the people running the trial have reason to believe there is some efficacy to the drugs, but phase one also means the real goal of the study is to identify a dosage that is not toxic. Yes, you are right, a clinical trial is better than no clinical trial, but as I came in to MGH over and over again, for blood work and scans, for biopsies and CT scans, my life felt diminished. I asked friends and family to send me photos of what they were seeing as they went out and about because I wanted to broaden the horizon of my world beyond my bedroom, my living room, my kitchen, the ride down route 2 to MGH. 

I got a little jealous. I don't begrudge anyone else their vacations, their bike rides, their hikes, the elaborate dinners they made, the elaborate dinners they consumed. Or maybe I do. Begrudge, that is. I wanted health again. To wake up in the morning and go for my slow turtle run of 11 minutes a mile (which I know is actually a brisk walk) and to catch a bird on the wing. 

 Beloved relatives come to town to visit. By late afternoon, they would quietly leave me resting in one of my favorite chairs and go out to dinner. Of course they did. Begrudge is the wrong word. Because I don't begrudge them this.  I just want it too. I long for health and I feel it slipping away.

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I wrote the above a month ago. I found out last week that I am being removed from the latest clinical trial. Kicked out is how it feels. The irony being that the drug itself is actually working on keeping the cancer at bay. But the drug is also causing pneumonitis and that's a showstopper. The pneumonitis will also likely preclude me from taking certain other drugs. The nurse practitioner and my favorite nurse from the trial cried when they told me.  So did I. Having told them I was experiencing leg buckling and falling and failing a test to see if I was properly oxygenated while walking the halls, I was swooped up to Lunder, the cancer floor, and stayed in the hospital for several days while steroids coursed through my body, healing my lungs and providing safe passage for oxygen. I missed the boys' birthday--they turned 12.  We Facetimed in the morning as they opened presents. Pickleball paddles and a portable net won the day, and they have been at it non-stop since opening the packages. 

That same night my blood pressure spiked and I had a panic attack. I tried diaphramatic breathing and an attempt at nice chatter with the doctor on call, but grief and fear kept pushing into my mind, and although I tried keeping up with the conversation meant to calm me down, I couldn't stop crying. My body is breaking down, but my mind is right here, ready to go for another twenty, or thirty, or forty years. Ativan and some bad television got me back to bed and smoothed out the fear.

Travelers in the wilderness of sickness.

When I fracture the world into two, the sick and the well, I forget the multitude of fractures that we cling to in order to understand ourselves and perhaps, more often, in order to pretend to understand others. Are we Jews? Are we pro-Israel? Does that mean we don't mourn? Are we pro-choice? Are we scandalized by the constriction of available choices? Does this mean we don't clasp our own children tightly to our skin and bones, heart beating wildly at the thought of loss? And yet, if I flatten all of the words into thin layers of composite rock, I lose the sharp pain of feeling different and also the real yearning I know makes my heart race in the middle of the night. I want it to be simple to love. To have clarity about protest and youth and history and my aging, dying body. 

And so it's spring and the tiny, tendergreen leaves unfurl and stretch for the sunlight. The tulips briefly are proud and tall and then one day they start to bow, color fading. Those fields of tulips in Holland--how do those flowers survive their trips to various and sundry markets and flower stands? Do they strike out on their adventure only to circle down, over a matter of days, to the limp, drooping faded blooms now in my kitchen? Or am I romanticizing the source of my tulips? My tulips never populated Dutch fields; instead, they grew up in hothouse nurseries or down the road at Wilson Farms, in Lexington. As a young mother, I would sometimes allow myself a trip to Wilson Farms, say if I was having people over for dinner, and I wanted the best basil, or the best strawberries. I coveted so many other things once there: the sourdough bread and the apple crumb pie, the clean, full chicken breasts, the tiny straws filled with honey you could hand to a weeping toddler, crushed in the corner of the cart, the baby strapped to my chest, the older boys at preschool or kindergarten, my brow damp and my hair frizzled.We didn't have the money for me to be pretending to be one of these toned Lexington moms, stopping by after step aerobics, a class I would certainly break a hip doing now, my bones are so fragile. This was before yoga and pilates were the be all, and people still went to jazzercise in church rooms. 

I feel my body's exhaustion. Seven years into this and starting my eighth year this summer. I have asked so much from my body--I can hardly remember the number of treatments and surgeries and procedures and all of the side effects. My poor, tired body. It's not exactly so much that I have given up hope as it is that my body is telegraphing to me: help, slow down, I am weary. I respect my body--I don't think of the cancer as my body. I think of the cancer as an interloper, stranger comes to town. I think when this stranger leaves, I'm going with him. Out west. Beyond the horizon.

I am afraid. I am not afraid. I am scared. I am not scared. I am almost frozen with fear of what happens next, unable to process the idea that nothing happens next. This feels like dangerous thinking--am I scared of judgment? On my soul? Do I have a soul? I think I do. Fear might be less a lack of faith, but more a lack of safety. I'm floating in darkness. Who else is there with me? Fear invites me to contemplate the anger and grief and sorrow of broken promises I think were never made in the first place. I had hoped for a different outcome and late at night I can begin to wonder, a small tap on my shoulder, is it me? Am I not getting what I thought I was bargaining for because I don't deserve it? 

Maybe. But in the scouring light of day, I don't think the tapping on my shoulder is judgment. I don't feel abandoned by God or faith or whatever the right and best words are to describe the small hope still in me that takes the suffering and grief of the world as well the joy and gratitude seriously. But sometimes I struggle to hear a response to my call.

So I'm waiting, again, here on earth, to hear from my oncology team about whether there are other good options for treatment, or maybe just some run-of-the-mill options. I don't think there are no options yet, but I do think hospice is now and forever more a choice I can make. Stopping treatment feels like heading out into the wilderness and I hope (again) I can go with bravery and the fear I know I will feel will be an invitation to experience acceptance. Before I can know love is the deepest, best and only action, state of being, reason, choice, God, I think I have to grieve and live with fear modified and find the blessing in that. I am not just the late night moment of panic and racing heart holding the hand of the stranger doctor in the hospital last week.

I am thick in the living still--chatting on the phone with Avery about worms and composting, watching Zoe plow her way through endless testing to become a nurse, talking with Zachary about Gamestop stock (if you know, you know), watching my over-thirty year old son eat chicken nuggest with delight after picking up Elijah at baseball practice. I am sitting at the kitchen table, helping Elijah with his homework on John Lewis, helping Asher with his citations for his five paragraph essay on how lung cancer causes anemia. The three of us gobble up the leftover birthday ice cream cake with its delicious chocolate sprinkles. These sprinkles are real chocolate, not plasticky. The dog curls up next to me on the bed at night, his heavy sighing as he falls into a deep sleep. I follow him down, into the darkness, not even a little bit afraid.