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January
1
2021

December 31, 2020

Last Sonnet to Orpheus 

Quiet friend who has come so far,

feel how your breathing makes more space around you.

Let this darkness be a bell tower

and you the bell. As you ring,

what batters you becomes your strength.

Move back and forth into the change.

What is it like, such intensity of pain?

If the drink is bitter, turn yourself to wine.

In this uncontainable night,

be the mystery at the crossroads of your senses,

the meaning discovered there.

And if the world has ceased to hear you,

say to the silent earth: I flow.

To the rushing water, speak: I am.

- Rainer Maria Rilke (translated by Joanna Macy and Anita Barrows)

 

I hope it’s been a happy Christmas for you all. Ours was so special, although bookended by a couple of very intense headaches--the first of which resulted in a mild but lengthy seizure and the second of which sent me to the hospital for an overnight stay and some strong intravenous medicines. My reading comprehension is gone entirely, and my field of vision has been further compromised. My blood counts have been too low to restart chemo, and I have just made the decision to discontinue Optune--the head device treatment I have been wearing faithfully for the last 3 months. The seizures and headaches may be linked to edema, which is swelling of the brain. I’ve just been given additional medication to try to mitigate any more symptoms. My recent MRI scans have shown possible new tumor growth, although that cannot be confirmed for another few weeks until a period of possible benign “pseudo progression” post-radiation can be ruled out. It just seems like we have not had a lot of good medical news in awhile, and that’s had me feeling pretty down. 

After the seizure, and with the MRIs showing potential new tumor growth, it seems right to keep facing what is devastatingly true about glioblastoma and its very poor prognosis. I fear my death will come sooner than I first envisioned, although I fervently hope and pray that my intuition is wrong. There are going to be some bad days, and so I am trying to savor the good ones, and I believe there are still many of them ahead.

But my sadness overwhelms me today. And the truth is that I am so scared to die. I want to be strong and enter into all of this gracefully, but I am afraid. My life has been so charmed and wonderful, filled with miracles--deep friendships, incredible parents, hilarious siblings, two children, my loving spouse, the most awesome family I married into, meaningful work, not to mention I have seen the Indigo Girls in concert nearly 50 times!

When I had babies, I remember the postpartum panic that would come over me. Usually my imagination would take me to an anxious headspace in which Robbie died tragically and I was left to raise our children without him. I’ve similarly panicked about one of them dying young too. I’ve believed myself to be strong enough with those fears because I believe myself to be courageous and capable of facing all that pain and loss. But I never really conceived that I could be the one to die first, and this is such an out-of-my-control loss. I cannot stop its progression, or ultimately change it. So I am thinking about what I can do in this time. My recent hospital stay and symptoms have given me a sense of urgency to make a so-called bucket list and set priorities for the ways I’m spending my time. Robbie and I have talked about how our lives may have to get a little smaller in order to focus our time, to let every visit count, to find the courage to have hard conversations because I realize I don’t have a lot of time or a lot to lose. I guess this is the essence of my bucket list. 

I asked my friend John if he would lead my funeral and do my eulogy. He said absolutely he would be honored, but only on the condition that I would do his. What an incredible answer! And what an incredible friend. And my friend Bonnie introduced me to a local nonprofit called Larkspur here in Tennessee that supports the process of natural burial. The site for burial is on a large parcel of rolling, undeveloped land that is held in conservation. I am eager to learn more about this, and consider it as a real and environmentally-sound option for my final resting place. 

Having recently been one of the family members who had the privilege of sitting with my cousin Kirke before he died, I’ve been marveling at how one day we’re holding the hand of a living breathing beloved body and only a few days later scattering the ashes from that very flesh and bone into the eternal fire. The veil between life and death is thin. My friend Scott has been bringing communion to my bedside over the last several weeks. Before becoming ordained as an Episcopal priest, his ministry was as a hospice chaplain, so he’s very comfortable sitting with folks living with terminal illnesses, and thus talking about dying, transition, eternity, angels, and the fears on my mind right now. It is such a gift to be in the presence of those who can hold the sadness and the fear and not try to take it away, but just meet me inside of it.

The Rilke passage above confounds me. When he writes “what batters you becomes your strength” I simultaneously understand that and feel that and yet I find it so problematic. I do not like the theological claims of suffering being salvific. For example, the last line of St. Francis’ brilliant prayer is “for it is in dying we are born to eternal life”--what does it mean? Theologically I struggle with this, and yet I also find comfort in it. There is a passage in the gospels when Jesus says “I came that they might have life and have it to the fullest.” What does it mean to have life and have it to the fullest? There has been, in my interpretation, so much maligned, anti-gospel translation of this passage. Living life to the fullest is certainly not about accumulation or quantities--money, friendships, homes, or hoarding opportunities. I imagine the hope here is about living deeply, with intention, with purpose aligned within the essence of god’s call and hope for us, which is really to deeply love and let ourselves be loved. As I think and feel my way through whatever remaining time I have, I have been reflecting on these questions and asking god to guide me towards answers. I lie awake in my bed at night, and like the disciple Thomas, I say “I believe! But forgive my unbelief!” 

Our family is working through these questions in different ways. We’ve had the privilege of working with a psychologist over the past several months to give our children additional context around my cancer diagnosis and some space to process the many emotions for all of us that accompany it. In a recent appointment with my six-year old son Thomas, he shared quite a bit with Dr. Herrington about my cancer. She asked him to draw a heart and write down words inside the heart of what needed extra special love. His list included “fish caught in nets” (and not released), "Christmas trees that were chopped down" for the holidays, and his family. She then gave him a band-aid to put on top of one of those concerns in need of special love right now, so he put it on top of the word “family.” We finished up our session by reading an incredible children’s book our friend Kendall sent us called The Invisible String. It’s a story about loss, and how people remain connected in their love even after separation or death. Since that appointment, Thomas and I have been using a hand gesture of tugging on the invisible string that connects us to one another in love. 

My mom recently told me about her own version of the invisible string. She takes a bike ride every morning on Jekyll Island, where she lives, and as she rides, she silently talks to her deceased loved ones, like a long telephone call with an invisible cord. First she calls her mother and then her father and then her sister Kathleen, who died in September of this year. Then she moves on to god, and then Jesus. And then, to wrap it up, she asks Jesus if he could put Kathleen back on the line. 

Part of my process these last months has been to open myself to meditation. In one recent meditation, I met a huge salmon--female and strong. She met me at the edge of the water and said “I got you, follow me” and all I had to do was hold onto her tail and follow. I didn’t have to fix anything or worry about anything, all I had to do was hold on. She swam us down and down in the water to a place called the chamber of gifts. I was supposed to pick a gift and then I realized that she was the gift! But I couldn’t take her with me. She told me I could call on her anytime and she would meet me in our place at the edge of the water, and that she will always, always know how to go back, to find me, to meet me there.

Thank you for journeying with me through this “uncontainable night.” Your cards, words, texts, and comments here mean so much to me and Robbie. Thank you for pouring your deep love into our lives, tallu

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December
11
2020

December 11, 2020

In my fourth grade year our class did a deep dive into Tennessee history. As part of the study we spent a while on the rich music traditions of my hometown--Nashville, TN. We were given an assignment to compose an original song about a subject of our choice, and one lucky student’s song would be chosen and performed by Layng Martine Jr., a well-known songwriter in town, who is also a close family friend. The project culminated in a field trip to the Country Music Hall of Fame, where the selected song would be performed live by Layng himself. Since I had a songwriting dad, with a modest recording studio in the basement of our home, he and I worked up a rendition of my song “We’re on Our Way to Disney World“ and set the masterpiece to music. I was secretly so confident Layng would pick my song and perform it in front of the rest of the fourth grade, but instead, he picked Clementine Howard’s song and sang it from the stage. Clementine was my friend with the famous songwriting dad Harlan Howard, who penned legendary hits like “I Fall to Pieces” and “I’ve Got a Tiger by the Tail.” Of course Layng chose Clemmy’s song!

My dad’s songs have been such a formative part of my own identity. He started writing songs and playing music at a young age. He tells a story about a special gift his mother gave him—his first guitar. It was soon after his father died of cancer at the age of 48. My dad was only 16 years old at the time, and from what I understand, my grandfather died in their home in agonizing, audible pain. I lament not knowing my paternal grandfather or even how to refer to him. To my brothers and I, he never had a grandfather name. I’ve always sensed my dad has carried with him a grief that he cannot shake about losing his dad at such a young age. His deep faith in god and his masterful songwriting have no doubt been a balm for his broken heart for more than 50 years. I know my mom’s love has helped too. As I’ve gotten older I have noticed how some of the funniest people in my life also carry with them a lot of sadness, and I think my dad fits the bill. 

But I did have the enormous pleasure of knowing my paternal grandmother Vivian very well, and I treasure the memories I have with her--her pure white bars of Ivory soap, and her ability to wallop anyone in Scrabble, the way she’d take out her dentures for my brother and me when we were good, and her enormous sunglasses with the side panels that she wore over her regular glasses. My dad is the fourth and youngest child in his family; his siblings are 12, 11, and 10 years older than he is. A few years before she died, I asked my grandmother why there was a big gap in years before having my dad. She explained to me that my grandfather’s alcoholism had been so hard on their family in those early years raising their babies. After he got sober, they wanted to try for one more child, and it was my dad. I remember marveling at her honesty, and considering how truly miraculous it is that my dad had been born at all!

But grief. We can name it and face it, but it never leaves a person, and that sadness even trickles into the next generation and then the next. How has my father’s grief influenced my life? How will my own grief influence my children’s lives? And how will my children’s grief influence the rest of theirs? Will the adults surrounding them be able to recognize it and let it be what it is? I am heartened by the human miracle that people are capable of holding enormous suffering, even while finding much joy in life. It’s like the songwriter Shawn Colvin sings in her song “Trouble,” “this world’s a blessing and a beast, every day.” 

In a year when our whole entire world has been forced to grapple with suffering and death in this pandemic, there has also been so much loss in my family. My gorgeous Aunt Kathleen--my mom’s only sister--died of cancer in September, after a six year battle. One of her sons recently visited me--my cousin Pat. Our visit was in the morning and he’d just woken up from a dream about her. He was smiling through a face full of tears and telling me how close he feels to her when he has those dreams. And yesterday I had the honor of sitting with my cousin Kirke--Margo’s dad--who has entered hospice at the end of his battle with cancer. He is now living his final days, and I can’t find the words for the respect I feel for him in this most vulnerable time. I got to climb up on the bed next to him while he was going in and out of sleep. We talked about cancer and heaven and my dad. Their friendship has spanned a true lifetime, since Kirke’s wife Margie is my mom’s dearest cousin. In addition to getting weepy about my dad, Kirke was mentioning loved ones who have already died, as if they were in his presence. His hospice nurse told the family that sometimes the one dying will name deceased loved ones, or even imagine they are there with them. Margo and I talked about this kind of communion with these ancestor angels—the hard leaving and the slow entrance into what is to come. It’s so much like birth, but the labor is different. 

A lot of people die unexpectedly, and tragically there is no time for them or their loved ones to process what they will lose but haven’t lost yet. I have thought often about how difficult it is to have a terminal illness but what a gift it is to have this time to do my best to align my days with what is important to me. I’m not trying to gild the lily here--I hate this cancer. But for me, if I’m going to go out, I’d like to be prepared, and I do believe the way my diagnosis was detected affords me the time. What can I say, I’ve always been a planner! As I sort through my own grief and these generations of sorrow, I feel grateful to have this community of friendly readers. I am finding nourishment as I meditate on my own death, and unbelievably, what I hear when I get quiet and listen is actually a song, crafted inside all this heartache. 

Love, tallu

December
1
2020

November 30, 2020

The dishes that Robbie and I received for our wedding are a set of beautifully handmade pottery that we love. We joke about the pottery often because each of the dishes must be hand-washed. I vividly remember when our two children were very young and the daily work at home was abundant. There was this one night Robbie and I were blaming each other about the buildup of dirty dishes in the kitchen and he turned and said to me, “It’s just that sometimes I come to our sink full of dirty dishes, and I wonder whether anything we have can go in the dishwasher?’” and then we laughed and it broke marital tension in an instant. 

I love the story of our dishes. When we were considering a wedding registry, I pulled out a stack of six small dessert plates in six different colors. I’d bought them in Vermont years before. I flipped over a plate and saw that they were handmade by someone who signed their pots “R. Wood Studios.” We looked online for R. Wood Studios, and it turned out Rebecca Wood Fine Pottery is made in Athens, GA, where Robbie lived for seven years. A few months later, we visited her studio together, which turned out to be located only a block away from his old apartment there, and decided it would be the perfect place to register for our wedding.

Like any pottery that is used every day, many of the bowls and plates have cracked or chipped or broken altogether over the last 10 years. All those meals! We hand wash every piece and even fetch out the dirty ones a babysitter or relative unknowingly places into the dishwasher. Tonight I am thinking about what it will feel like for Robbie, on some distant day, when the last piece of our pottery cracks and gets tossed in the garbage bin. It’s just another image I have when I find myself thinking about him here without me, bravely parenting our two sensitive children in a very scary world, helping them navigate this life that will include much suffering. What will he think about while slogging solo through the hand-wash-only dishes? In times of overwhelm, will he resent my death? Will he feel so alone? Will he embrace his grief? Will he know how to cook dinner? Will he find some other bright companion when he is ready? What will she think of the handmade pottery?

The beautiful pottery is just one of many earthly treasures I think about starting to loosen myself from--the preciousness of all that I cherish in this physical life that I will not be able to take with me when I pass on from this to that. These treasures are not opulent and probably resemble things you may cherish as well: the wobbly clay pinch pots sculpted by young, chubby hands; the pressed, dried wildflowers stashed between the leaves of a book; postcards and photographs and letters I’ve saved; the crushed paper cup Christmas ornaments dangling from a pipe cleaner; the calligraphy and art my mother has made over the years. And not to be forgotten, the bottomless stash of gorgeous yarns I can no longer knit, and the heavy-laden bookshelves of words I have cherished but can no longer read. 

I’ve been thinking about heaven constantly--what I believe about it and what I wonder about it. I have intellectualized heaven so much, but lately I am meditating almost daily on what it will be like to reunite with god without the earthly trappings that prevent full and profound communion. I despair when I think about how in my death I will leave Robbie and our two children--whose bodies and voices I know as intimately as my own. I think about my physical separation from them, and it occurred to me that, in my death, I could reunite with the three babies we lost to miscarriage--one in 2013, one in 2015 and one in 2019. The nightmare of dying young and leaving Robbie and Lulah and Thomas is softened a bit when I imagine the possibility that in heaven I might reunite with all this love I carried in my body but knew only partially. What will it be like to leave this and enter into that? 

I dwell with grief. For me this is the natural consequence of living with terminal cancer and meditating on all I love. Some may interpret this as hopelessness or a lack of faith on my part to believe I can live another decade. But the truth is, as much as I journey to heaven in my mind and imagine who I might be able to love on and hold, I also go to sleep picturing Lulah at her graduation from high school or marveling at Thomas starring in a high school theater production. I can articulate every detail of this imagined future in which I am alive for these far-off dreams, even as I meditate on my own death. Florence Welch of Florence and the Machine has a song called “100  Years” with a chorus that goes lord, don't let me break this, let me hold you lightly, give me arms to pray with instead of ones that hold too tightly.” I am holding both my hope and my grief together in the same hands. It is a loose hold, looser than I am accustomed to. My love is so much bigger than me. tallu

November
17
2020

November 17, 2020

When I woke, 

I was alone.

I was thinking:

so this is how you swim inward,

so this is how you flow outward,

so this is how you pray.


Mary Oliver, excerpt from “Five A.M. in the Pinewoods” 


When I was living in Nicaragua, in my late 20s, I spent so much of my time there feeling lonesome. There was the problem of language--my Spanish was poor, and the problem of money--I had so little that I had trouble finding safe rooms to live in. One late evening I was using my last precious calling card minutes to talk with my friend David who was back home in New York. There is no question in my mind that I was probably complaining about something. While we were talking, a wet, dead rat fell out of my cardboard ceiling and landed at the foot of my bed with a splat. It was the same bed I was sitting in. “David! Some kind of dead rodent just fell out of the ceiling and landed on my bed.” He was even more hysterical than I, and suggested we get to work air-lifting me out of there immediately. Feeling as lonesome as I did then, I can still remember how good it felt to laugh with him on the phone. I faced the large, dead rat only half alone. 


In Nicaragua, each day there I was introduced to the inspiring, life-giving work of the organization I was working with, funded, in part, by my denomination. The people I worked alongside and learned from were exceptional--brilliant, bright, faithful, and incredibly patient with me. In nearly every interaction I had there, I always felt a little bit alone. This was no one’s fault, only the normal feeling any stranger in a strange land has in a situation like the one I was in. I always had the sense that I couldn’t fully show them who I was, and in turn, I couldn’t ever fully know them for all they were. I was simultaneously surrounded by people I deeply respected and wanted to know, and exhausted at the end of every day from all the effort trying. In some very raw and human way, even as lonesome as I was, the best part of every day was making it back into my own room and shutting my bedroom door for a long night, finally alone. God was my closest companion during that time. There was no language barrier with god, no getting frustratingly lost in translation. And there was no smartphone or texting or streaming to hide behind. I cried every day. I prayed constantly. I wrote to god while also feeling like god was writing the story too. It’s funny how we can, in hindsight, look back on an incredibly difficult time and remember it with fondness. When I lived there all I wanted was to go home, and here I am typing away about how close I felt to god and how that time was a true crucible for learning to love myself and coming to know myself as unconditionally loved.


I have experienced intense times of loneliness in my life. The lump in my throat when my parents dropped me off at college comes to mind. The disorienting loneliness I experienced traveling and living abroad. And that painful distance I have felt in some of my closest relationships, even in my own strong marriage. And despite the near-constant presence of those I love completely, I have felt so lonesome in this illness too.


But I have never felt all the way alone. In my earliest memories, I’ve had an always-present sense of god within me, close to me, hitched to me the way my breath is. This benevolent presence is not something I earned or was owed or applied for or remember receiving at some discrete moment in time. God’s loving presence has just been a truth of my life, and it’s been in the emptier, slowed-down, or even painful times I can feel this divine love and the strength of her company the most.


In seminary there was always this theological question that we students would pivot back to again and again--does prayer influence outcomes or does prayer (simply or not so simply) change the one who is praying? Both? I hope prayer has the power to influence outcomes, and I know prayer has changed me. Softened my rough edges, slowed down my anger, increased my capacity to hope, provided courage, and many other things I’m not even aware of. My understanding of what prayer is has changed in my adult years, I used to polish my prayers I would offer publicly when I worked in churches. There is nothing wrong with that, but it’s not really my jam anymore. My dad wrote a song called The Prayer of a Desperate Man. It was never listed on the Billboard charts, but people tell me often, at the grocery store or in the BNA airport, that that’s a song that changed them. One of the lyrics is “He’s known me from my birth, and I think he roams the earth for the prayer of a desperate man, ‘cause that’s what he understands.”


This is an exhausting, emotional illness. I am experiencing life at half-mast a lot of the time. In the same way as attempting to communicate in a language I don’t really speak, it can be lonely trying to translate how I see and what I feel to others. My prayers these days are pretty desperate, completely unpolished, and so immense they aren’t even offered in words, just tears. But what pulls me out of my fear and loneliness are prayers of thanksgiving--naming what I am grateful for--habitually, outrageously, daily. With these prayers, I swim inward, flow outward, and draw nearer to the Love who created me, surrounds me, resides within me. And it is the same Love who will carry me into that great beyond, I believe and I pray. 


With love, tallu


November
11
2020

November 10, 2020

We recently spent the weekend with our friends Johnny and Deb at their farm in Mississippi, just off the Natchez Trace. Johnny is an old friend and mentor. He’s retired now, but is a beloved preacher in our denomination, and now a farmer. We went to Bosnia together when I was in seminary. He has amassed some truly fabulous stories as a result of his vast travels and deep friendships across the globe. And for every story he has increased in compassion too. I treasure our yearly visits, and always leave their place feeling happy and more hopeful than when I arrived.

Typically when we come to High Hope Farm, I get to mow some fields on the tractor. Not this year because of my eyesight, but these parcels of land are no less known to me. A person can work out the knots in her mind spending a few solid hours on the tractor mowing a field. It is one of my favorite ways to pass the time, perhaps because I can visually see my progress as I go along, unlike so much other work in life. At the farm, doing the daily chores is so pleasurable. Everything at High Hope is meticulously and intentionally cared for. The layout of the physical space so reflects the care with which Johnny and Deb approach their work. The trees are mulched. The steers get moved to a new paddock of special grasses every day. The hay is neatly tucked into the barn for the winter. Fences are in great shape. At their farm my family has worked the lambs, mucked the stalls, moved the steer, collected the eggs, clipped the herbs, and during one visit, watched a neighbor check on the beehives.

I am so drawn to this well-cared-for place and these daily practices. Doing these chores does not confuse the mind, but smooths it out somehow. Johnny and Deb’s farmwork is suffused in what I observe to be applied hope. They give to their land more than they take from it. They do not overgraze their fields or use chemical fertilizers or pesticides. They earn a decent wage, but they have made a conscientious choice--and make this choice daily--to trade in the fear-based economic methods of extraction for stewardship that recognizes how the health of their land is always connected to their own health and the health of their community. 

It is not lost on me that the farm is called High Hope. For me, it is a thin place, a place where god’s presence is easily felt and our love of god is freely expressed. The essayist Maxine Kumin has a powerful line of writing I’ve been carrying around for nearly two decades: “It is important to act as if bearing witness matters.” 

As if. There is a lot to those tiny two words. We have to practice what we hope for as if what we hope for might be possible. I thought about this so much while I was at the farm. We have to flex our muscles of imagination, and we have to keep flexing, for the bearing witness matters. The reason I know it matters is because the witness of so many people has mattered to me--the neighbor who picks up trash in our park, the school bus driver I met who slips extra food to the kids on her route, the donor who sends in her $5.15 donation each month, the dad who’s coaching soccer for my uninterested 8-year-old and a gaggle of her friends, and anyone who’s wearing a mask these days. Showing up like this requires effort, but more importantly it requires enormous faith, which I’ve been told, is the substance of things hoped for, the evidence of which is not always seen. 

Since learning I have cancer, my own mental anguish has, at times, found me in a real state of limiting belief and lack of faithful imagination. I think to myself that I won’t live very long. I tell myself I don’t have what it takes to keep going. My impairment and limitations overwhelm any sense of moving forward. For many of us, we don’t dare to live into our imagination until something really bad happens--like a pandemic or the loss of something we loved, like a job or a friend. In loss, perhaps with less to lose, our imagination wakes up, and we find the courage to go towards something we previously thought wasn’t within reach for us or for our community. 

Staying hopeful in a really hard time can feel like such a daunting task. But breaking hope down into small acts, or small daily practices, makes staying faithful easier. The daunting thing becomes possible when approached little by little. Hope has to be not only imagined, but practiced. We have to do the work of imagining what could be possible, and then do our little part to make it real. A current example of this is how voting is an act of bearing witness. You mean my tiny vote could mean something in healing our deep societal wounds? Impossible! But over these last few days, we are all reflecting on how much every single vote mattered in this election.

For me, even writing down these words in this journal has been a practice of bearing witness. I think about how meaningless my tiny story is in the bigger picture of your lives. But in putting this out there anyway, I’m choosing to believe that bearing witness to both my sadness and my hope, in some small way matters. 

I know it matters to me. tallu

October
29
2020

October 29, 2020

I had a mild seizure a couple weeks ago. I was standing on my front stoop talking with my friend Lauren. I remember we were talking about what we would each be making for dinner, and I couldn’t tell her. I couldn’t get a grasp of any words. At some point I must have laid down, which I don’t remember, and Lauren called for Robbie. I came out of it a few minutes later and we all talked about what had happened. A mild seizure like that is not unusual post-radiation, but it was my first one and very disorienting and I have been placed on an anti-seizure medication indefinitely.

This week has been a big one. On Sunday my dad and brother shaved my head completely to prep my scalp for my next course of treatment called Optune--a wearable head device that can prevent new growth in the brain. On Monday morning I was fitted for it and began the Optune therapy. It consists of a series of electric pads on my scalp that I will wear every day, changing them out twice a week. It is a cumbersome intervention, and I am still getting the hang of my head tethered to the many cords that keep treatment powered. On Tuesday I had an appointment with my neurooncologist and got blood drawn. The labs came back and my counts are looking good. On Wednesday I had my first MRI since starting and completing radiation. And this weekend I will restart a pill form of chemotherapy. 

My brain scan this week looked as we expected it would post-radiation. Less expected was that the scan also showed an enhancement in an area adjacent to the original tumor. This small circle was not visible in earlier scans and could indicate new growth or inflammation as a result of the radiation. All of my doctors will meet this Monday at their tumor board review to discuss what this might be and whether to change the course of my treatment moving forward. 

The medical options available for glioblastoma multiforme are so very limited, and they all have side effects or require significant life change. Beyond the standard of care I am following (surgery, chemo, radiation), Optune is the only other FDA-approved treatment known to have some benefit to glio patients. According to studies, using Optune, a patient in my situation has a 20% chance of living five years. It’s still such a low percentage in the big picture, yet that’s up from a 5% chance without it. But Optune and all it involves is bulky and cumbersome and impacts my quality of life as I’ve known it. Of course, so could a fast-moving tumor that Optune could prevent or slow down. But when I consider the possibility of 3 additional years of life, it feels worth it to try. 

Robbie and I are making a lot of decisions about my medical care right now—all of them imperfect among many less-than-ideal choices. We are doing so thoughtfully and carefully. It’s just true that no one else can know all that goes into making these kinds of decisions unless they themselves are living them. I feel like I am walking through these days with thin skin as we navigate this very difficult diagnosis. I feel sensitive to the advice, judgments, and even suggestions of others—what I should or shouldn’t do or be or say or consider. I know I have, with all best intention, doled out plenty of unsolicited advice about stuff I had no business offering or even discussing. I lament all of that now with new, tender perspective. I wish we could all just listen better and be present better and in turn love better. Instead we pile on, put a lot of obsessive effort into making better or making different. To be completely honest, I don’t want advice from you readers who are dear to me. I just want to use this site as a place to put my many questions out there. Anyone who claims these questions are even answerable, I feel, is missing the bigger point, which is that we can only do our best to weigh all the beauty and heartache and find some middle ground of trust and hope. And while nearly all of this is so incredibly devastating, there is gratitude in knowing I’m going to die. Ha! Of course we all know we will die, but I guess I have specific gratitude to think about how I want to live now in the particular as opposed to in the general. 

Thanks for giving me the chance to share my stories here, with a cloud of witnesses both known and unknown to me. Your prayers and affirmations continue to keep us going in every way, and I covet your listening ears and this space. 

With love, tallu

October
29
2020

October 28, 2020

I am thinking about Robbie tonight, and so many funny stories of life with him. There was the summer I flew to New Hampshire to visit him, where he was working at Dartmouth. I arrived at the dorm room where he was living to find his bed made with a new-to-me twin sheet set bearing a scene from Prince Caspian from The Chronicles of Narnia. There was my 30th birthday when he handed me a brown paper sack and inside was a knitted cowl--handmade by him--and I didn’t even know he could knit! There was the time Robbie used our good bread knife with a serrated blade to cut a 2x4 when he couldn’t find a saw. And the time, when we had just started dating, and we were making dinner in his apartment. He asked me “so do you know how to make soups and stuff?” and I looked at him and said, “I’m like a really good cook.” There was the time Robbie spent $1,600 on Lizzo tickets for his little sister without talking to me first. And one of my faves--we were cleaning out a closet with luggage in it. He opened up a suitcase we hadn’t used in a while and inside he found a red Dot--the gummy candy. I watched him pick it out of the suitcase, dust it off, and pop it in his mouth. 

I guess this is a little bit of a Robbie appreciation post. His tenderness and kind words and positivity mean absolutely everything to me right now. He is slow to anger. He is managing so many different things with patience. Robbie speaks to me with so much love. The kids and I woke up sleepy this morning, slow and grumpy. As I came down the stairs, he handed me coffee and started singing “It’s Beginning to Look a Lot Like Christmas,” and he got our children pumped doing a song and dance in his jammies about how it’s recycling week--our favorite week of the month. Miraculously we made it out the door to get to school on time, and Robbie was the kind engine that got us there. 

Nearly 10 years ago, our friend Viki officiated our wedding. During the ceremony she spoke to us referencing our wedding reading—a seven-part poem by Wendell Berry called “The Country of Marriage.” In my fifteen years of officiating weddings several of our closest friends have also used this Berry poem in their ceremonies, many of them I’ve had the privilege of being a part of. Here is part III of the poem:

 

Sometimes our life reminds me 

of a forest in which there is a graceful clearing 

and in that opening a house, 

an orchard and garden, 

comfortable shades, and flowers 

red and yellow in the sun, a pattern 

made in the light for the light to return to. 

The forest is mostly dark, its ways 

to be made anew day after day, the dark 

richer than the light and more blessed, 

provided we stay brave 

enough to keep going in. 

 

Do you understand this metaphor for marriage as both the clearing and a forest? When we marry we think it will be a life in the clearing, but it is a lot of forest. It’s pretty obvious to state it, but this cancer finds us in the darkest part of the forest. Darker than dark. And in stress and fear and grief and the vast unknown, my spouse is bringing forward his absolute very best. I get so overwhelmed and frustrated with my limitations, and he quietly, patiently, lovingly comes to my side with all the kindness I imagine a person can muster. 

When you marry someone, you cannot know how your years together will unfold. You cannot no the forest will contain so much loss or sadness or struggle. You cannot even know how many years you will have together. Recently, I changed the words to the benediction I typically use at the conclusion of each wedding ceremony that I officiate. Now I say “Walk now, into whatever comes next, knowing that god who is love, is always, always walking with you.” Isn’t that all we can know about the unknowable future--that something will happen next, and the great benevolent love who made us will not leave us?

A couple weeks ago our dear friends Cari and Steve got married and because of Covid, there were only a few invited guests, and Robbie and I had the supreme honor of being among them. I was officiating the ceremony and prepared a homily for their service. When I got to the part of the service where I would typically read the reflection, I could tell I would not be able to physically read it. I motioned to Robbie from the altar and asked him to come forward, explaining to the guests that they were my words he’d be reading and that I’d recently been diagnosed with an illness that had affected my ability to read. Without pause Robbie grabbed my hand and held it and began reading the reflection, which referenced the themes of their wedding reading--the same as ours--The Country of Marriage. 

As I think about him doing that for Cari and Steve and for me, I think about how the forest really is richer and more blessed. Robbie and I have spent so many of our married days in the clearing. Despite significant heartache and loss, our marriage has felt like an embarrassment of riches in a wide, open clearing. But we are in the forest now. I feel strangely grateful for the forest tonight, for its blessings, because we are together here, and we were brave today, and I believe we will be brave again tomorrow. 

With love, tallu

October
21
2020

October 21, 2020

When I was in high school--I can’t remember which year--I was awarded the citizenship award on the last day of school. I remember being so surprised to be getting an award, and I also remember coming home to look up the word citizenship in the dictionary to understand what it meant and whether I really had it. 

I haven’t felt like a very engaged citizen the last couple of months, and I am grateful so many of you are. But I’m aware enough to know that these are difficult days for our nation. Covid continues its spread, disproportionately affecting people of color. The political climate is more divided than I have ever known it to be in my lifetime. The movement for Black lives calls for a crucial racial reckoning for justice after centuries of white supremacy and institutional violence. The earth is groaning from the abuse of unchecked human consumption and “business as usual.” The economic disparities shaped by policies that privilege a few while so many fight over the crumbs left behind have resulted in a scarcity mindset in a true land of plenty. The diseases of despair so many struggle with daily have a way of overshadowing whatever hope and resilience we may typically cling to. Add to this the personal battles each one of us may be waging--cancer, addiction, infertility, unemployment--and it’s a wonder anyone gets out of bed anymore. 

My mom called me last week to jokingly let me know she was thinking about divorcing my dad. I laughed and asked what was going on and she said she had a suspicion about how my dad voted. My dad--not a fan of either presidential candidate--made a planned trip to Nashville the following day. When he arrived in Nashville I broached the subject of the presidential election with him. Even considering the possibility that he could vote for someone who to me seems so hostile felt personally offensive. How could someone I respect so much possibly cast a vote for someone whose politics, behavior, belittling demeanor, decisions, and very presence I find so egregious? After talking for a while, my dad said “Can we stop talking about this? I love you too much.”

Sometimes I feel like I was born at the wrong time. The vitriol and division, the sophisticated killing machines, corporations who have more rights than many humans do, no regard for the myriad ways we poison our planet, the gross inequity, all of us constantly on screens, lives of disposable convenience. I know these things existed in their own expressions in previous decades, but in times of despair for humanity I find myself doing some revisionist history and waxing poetic about bygone days. But the truth is there has been progress and I enjoy the access and rights afforded to me as a result of that progress. 

Anyway, I don’t actually know who my dad voted for, or whether he voted for president at all. As a citizen, that’s his alone to know. But last night after a good 24 hours of knotting myself up with anger about it, I built a big fire in our front yard. I made a huge salad and brought it all out to the fire. Neither of my kids wanted to eat the salad and both had a hunger-induced meltdown. Robbie took them inside, and I sat my angry ass down on a stump and ate four bowls of the salad and stared into the fire alone. I thought about this election and all it symbolizes in this moment and I also thought about my dad who’s taught me so much about honesty, respect, generosity, and even citizenship. Eventually he joined me around the fire and when it was time to go in, we untangled the long hose and put out the flames. I heard an expression once--that staying angry at another person is like drinking the poison and expecting the other person to die. There is righteous anger and it’s our duty as citizens to stay awake to the grievances of humanity. I don’t want to lose sight of that, but before going to sleep last night I decided I’m not going to fight with my dad about politics anymore. The days are too precious, and I love him too much.

With affection, tallu