Adding on to the Beatles, I've got to admit it's getting better...
When my nurse last night helped me convince the doctor I didn't need to be on IV fluids all night long
and I slept most of the night
When I enjoyed a veggie omelet this morning, unlike the evening before, when I threw up just looking at the menu
When the steroids helped calm my headache and nausea
When I came home and went to the neighborhood eagle's nest and watched the parents feed their two new babies
When Jenny married me 20 years ago, and continues to inundate me with such unconditional care
It feels miraculous to be home and feeling good. Amen.
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I now have a laser surgery (Laser interstitial thermal therapy) tentatively scheduled for next Tuesday, the 21st. Today we went to the Mayo Clinic and got lots of input from two surgeons, two oncologists--and ended up confirming the same plans we made with my regular doctors.
Yesterdsy, when I was walking at the Minnesota River, I pulled out my phone and unintentionally saw the MRI image I attached to my previous CaringBridge post, showing the new tumor right next to the part of my brain I use for language. The image triggered a wave of despair, as I thought of the medical probability that I won't be be at either of my kids' high school gradations. Medical probabilities aren't certainties, though. I've outlived multiple rounds of medical probabilities already.
When I was freaking out at the river, there was a great egret in the pond in front of me. I think I've seen the same one several other times. His eyes are surrounded with a beautiful green, to attract a mate. After I came home from the river, I had a meditation time with my friend, Beth, where I felt like there was a very tangible web of Great Love moving up and down through my head and the rest of my body.
Most days I read a daily email meditation from Richard Rohr. Today's meditation was about Gods' Ecstasy. He said, "My hope is that others will get a sense of how the universe is radiant and exciting and how we are poised right on the creative edge, right where the new action is happening. God’s action, our action."
The combination of the despair, egret, meditation time, and email clarified for me that I want my next phase of treatment to focus on seeing, feeling, and taking in God's ecstasy--the joy beyond understanding that has space for despair, fear, pain, birds, brain surgery, wrapped in an ecstasy of belonging that doesn't exclude anything.
Want to join me in the treatment? I think it works better together.
I know my language can sound over the top, but since my language is threatened, I figure I might as well get in plenty while I know I can.
We met today with my surgeon, and reviewed the functional MRI that I had this past Friday.
He recommends a less invasive laser surgery, LITT (Laser Interstitial Thermal Therapy). My understanding is that they drill a small hole in my skull, insert something like a straw, and usera laser to burn part of the tumor. After that, they’d do traditional radiation for the new tumor, and some of the area between the new and old tumor, since there is probably cancer in that section too.
I’m attaching an image from the functional MRI, which shows a key area for speech, in red, right up against the new tumor, in light grey. There is risk of impairing my speech from the laser therapy, but not as much as a regular surgery, and the impairment might be short term.
I don’t know yet if my insurance will cover LITT. A team will have to come from Chicago to do it, but they’d do it at my hospital. Scheduling is more complicated, but they hope to do it within the next week or so.
The surgeon thoughtfully reviewed other options too (traditional surgery, radiation, no treatment for now). My wonderful doctor partner, Peter, was in the appointment, and he supported the LITT option, partly because it would be less invasive and disruptive for me.
Because I wanted to make sure I documented some things while I knew I could speak, I made videos this past weekend for my kids, and some others. I feel pretty prepared with financial and practical things, if I can’t speak. It feels a little like clearing off my desk and responsibilities before going on a vacation. For me, having that clean plate can sometimes be as much fun as the actual vacation. I don’t want to wait until death for that kind of freedom.
As we biked to the surgeon’s office, I imagined that when I was there, he might say, “You’re healed, son! Pick up your mat and walk.” While I didn’t hear him say that, I still felt some of that invisible invitation. I also appreciate the possibility of a less invasive medical treatment, to give more space for intensive love and nature therapy as the primary treatment.
I’ve posted this song, Everybody’s Chains Came Off, here before, but it felt appropriate to play it loudly again today, when my family was out of the house. All the chains fell off, even for the shy one in the corner. Freedom is calling. The loss of my language and thinking won’t be the end of me. Death won’t be a failure, and freedom doesn’t have to wait until death.
The weight of my recent MRI news is slowly and intermittently sinking in. Since the cancer has crossed into the left hemisphere of my brain, with significant growth on the left side, there is a new scale of concern, different from the other times of growth on previous MRIs. In talking with my doctors this past week about the MRI, both my optimistic doctor/friend, Peter and my oncologist repeatedly, and compassionately, used the word “bad” to describe the results.
The news is prompting me to do things like review all our financial accounts with Jenny, write a draft of my obituary, and consider what I need to say to specific people in my life.
I still believe in both continued miracles and also realistic acknowledgement. I know that dying in the coming months is a very real possibility, and I also believe living decades more isn’t out of the question. In any case, I know my language abilities are at risk. I’ve been crying more after this news, more than other hard MRIs. The sadness is interspersed with joy and awe too. I just got back from a very joyful hike with my family.
Yesterday, I did a functional MRI, where I moved my right hand and foot, to see which parts of my brain lit up in the scan when I did those things. I also completed sentences like “Little Bo Peep has lost her_____,” thought of different words that started with the letter A, and brainstormed things you can do with a ball--all to see which parts of my brain are used for these functions, to know where I might lose these functions in a surgery. On Monday, we meet with the surgeon to decide if and when I will have surgery.
I love the story from my friend, Brenda Hartman, of going into the woods to prepare to die from her stage 4 cancer, and coming out of the woods with unexpected physical healing. I want to follow Brenda’s example of opening up to both death and life, trusting the healing that comes.
I think of preparing to die as similar to how, as a society, we can use remaining fossil fuels to build sustainable energy infrastructure that can be used as we phase out fossil fuels. I have mental and verbal abilities now that I won’t have at some point. How can I use those abilities now to live in the fullness of the reality of love, in ways that make a hospitable space to receive grace for me and those around me in both dying and healing while alive? I know I can’t control it, but I believe I can influence how I relate to it.
Atul Gawande says that patients tend to lose their happiness when they are no longer getting to be the shapers of their own story. As I look backwards and forwards at my story, I’m seeking to shape my story by asking myself questions like:
Is what I came here to contribute released into the world? What nurture does it need? What is it time to let go of and to assert?
What gifts and challenges are mine to receive now?
What do I need to protect myself from, to make space for what is essential?
How can the pain and connection that crumbles my normal self and relationships allow the radiance of love to come through those cracks?
How can I lighten up about my own mortality and enjoy the ride?
What support do I need to loosen my expectations of the right way to die, heal, and live?
I know that part of the urge behind these questions for me is my ego, grasping to stay around after my body dies--but I also think it is a call to be true to my parts of the whole I belong to, in my family, communities, and ecosystems
A few years ago, my wise friend, Anne, teased me about how I was trying to control how I surrendered, which is ironic. I’m certainly trying to do that again, but my mind tends to always be doing projects, and seeking to design and collaborate on a good way through terminal illness helps me navigate and chill out on this part of the slide. My plans might all be illusions, but they help me lean into the ride. As a bumper sticker says: Jesus is coming. Look busy.
When my oncologist first entered the room, he said, "it is a bad day." I don't want to think of it that way, but I do feel scared and sad. I also feel alive and very grateful to be able to write this to you, to hug my children this afternoon, and to hold Jenny's hand through the appointment.
The next step is to have a functional MRI, to identify more precisely which parts near the new growth I use for language. Then we'll meet with my surgeon to map out the risks and decide together if and when I should have another surgery. The potential surgery could be a traditional surgery, or use gamma knife, a high power radiation. After a potential surgery, I'd then maybe do regular radiation on the area of new growth.
When I did a functional MRI before my first surgery, they had me read a Dr. Seuss book in the MRI machine, so I might have that to look forward to again.
With my use of language being threatened, I want to be especially appreciative of the beauty of language, and just as appreciative of ways of connecting and knowing that don't rely on language. I also want to be fully living in this fleeting time--and in what is beyond time. Sometimes I talk too much and live in words and ideas more than I'd like to. There's a good chance I'll have opportunities to have a new relationship with words and the places they come from.
I want to ask you, as needed, to remind me who I am and who we are, and if there are times I can't understand language, to remind me with your presence, eyes, and prayers.
For now, in the words of Monty Python, "I'm not dead yet." My body feels great, I'm biking, hiking, and writing philosophical posts.A wonderful research nurse is researching possible clinical trials for me. I'm meeting with my beloved friend/doctor, Peter, tomorrow morning to process next steps, and I have an appointment next week at the Mayo Clinic for a second opinion. And with the river and all of you holding me and my family, I'm in very good hands.
Short: I have a MRI tomorrow,haven’t noticed side-effects from chemo yet
This past week I’ve been a little obsessed, biking over the Twin Cities, looking for pelicans. Two years ago, I walked in a shallow lake with hundreds of pelicans, and I’ve been wanting to recreate that experience ever since. I saw a recent report that a bunch of pelicans had been in the river near an industrial part of St. Paul, but they weren’t there after I biked 15 miles to get there. I repeated this a few times, in different places, missing the pelicans each time, except some fleeting glances of them flying over. I can act similarly in chasing promising treatments for brain cancer. I keep pushing health professionals to look for new, possible treatments, even though they keep saying there aren’t any available that I qualify for.
Yesterday, on my way to pray with a friend, I sat next to the rapids of a creek close to his house, reminded that even when I don’t find the pelicans, what I need is available. Sitting next to the creek, it felt like there was a metallic claw rising up from my belly, reaching out from my chest, grasping for pelicans--and also grasping for a good MRI report tomorrow, and for close, growing relationships. I don’t like to admit to myself how strong my urge to grasp is, and how much desperation that can be underneath it. Even with terminal brain cancer, the longing I feel most intensely isn’t for a cure from the cancer, but for authentic, transformative relationships with people I’m connected with. Watching the rapids washed away the top layers of my grasping for pelicans and MRI results. Underneath those longings, there was still a restless longing for Intimacy, belonging, and living with purpose. And I still would love an encouraging MRI tomorrow!
My friend, Elizabeth, recently loaned me a book that helped me see my longing and grasping differently, Love is Stronger than Death, by Cynthia Bourgeault. In the book, the author describes a rather clinging, desiring spiritual friendship she had with a wise monk, as he was dying. The monk kept challenging her to release her grasping for him, and the author kept challenging the monk to lean into their connection.My interpretation is that our desire for closeness, even as we grasp for it, can be an essential part of our transformation and healing, if we combine the desire with ongoing practices of releasing.
After sitting by the creek, I met with my friend, Bob, to pray. We’ve done this every month for the past ten years. I need lots of ongoing practice releasing what I’m grasping for. This time of prayer, it felt like I was sitting in a hair salon, receiving a divine hair combing, slowly working on the tangles and knots in my spiritual hair.
This weekend in an interview with Atul Gawande, I heard him describe a study that showed that lung cancer patients who received palliative care, and did less chemo and fewer surgeries, ended up living 25 percent longer than the standard treatment control group. That paradox--that if we’re less attached and aggressive about our treatment, we might have better health outcomes, is one I think of often.
Right now I’m doing a less intense chemo than my oncologist recommended, but if I think that is the magic trick, that’s not less attached. I’m a desiring, grasping creature--just ask anyone close to me, or any of my health care providers who know how high maintenance I can be. But I’m going to keep watching water go past, praying with friends, and telling you stories about it all, in hopes that both the desire and releasing can be a part of a larger whole.
One larger whole that will be with me tomorrow, in the loud MRI machine and the nervous waiting for the results, will be all of you, and the care and engagement you’ve given me. In addition to tomorrow's appointment, I also have a second opinion appointment at the Mayo Clinic a week from tomorrow. And I'm working on a healing story event on June 10 that you're invited to. Thanks for your many forms of companionship.
I took chemo pills each weekday last week. We know that my blood counts, especially my platelets, tend to go down when I take chemo. I'm getting blood tests twice a week to monitor this. Last Thursday, I was a little nervous when I did my first blood test after starting chemo, thinking that I might need to stop the treatment right away--but, to my surprise, the labs last Thursday showed that my platelets had increased a little, instead of decreased. I knew it could just be a blip in the testing, but I still felt celebratory about the increase. My white blood count also had an increase that surprised me. Today, I had another blood test--and my platelets had an additional small increase. It still could be a blip, but I'm still feeling celebratory.
A peer reviewed study in Japan showed that participants in a particular kind of forest therapy had a boost in their immune functioning. In the past week, I spent two hours every day in the woods next to the river. I like to think that my time in the woods contributed to a measurable boost in my immune system, but I think there is another force that had a much larger impact on my immune system, the unknown. This week, the unknown feels like an active, intimate force that is available for partnership.
No one knows why I'm alive and feeling good two years past the median survival for glioblastoma. We also don't know why I got brain cancer. Sometimes I'm tempted to think that I know what will happen, or that a doctor does. There have been multiple times now that I thought I would probably die within a few months. I was wrong each time. I want to be in humble, reverent, playful partnership with the great unknown, instead of thinking I know what will happen--not a faith that the unknown will always give me what I think I want, but a trust that it will always offer something offer something that can open us up more fully to life.
This past weekend, during one of my forest times, it was the first day this year above 70. I was next to a small lake. Each log in the lake was covered with turtles, sunning themselves. I'm attaching a photo of a dozen of them on one log. After months of a frozen lake, they must've been surprised it was suddenly sun bathing weather. I want to be as welcoming of the unknown as they were.
As the eager turtles were climbing on to and falling off the crowded log, I played the attached Cloud Cult song for them, in honor of their exuberant, communal relationship with the unknown:
May you find faith in the Great Unknown.
Lay it all down… in a calm, safe space.
And if the dream doesn’t come… just wait
I've always had a strong wanderlust. Since my diagnosis, I've cancelled trips to Israel/Palestine, New York, and Boston because of health changes. For this retreat, I took a bus 15 miles up the Mississippi River, and walked and sat by the river, focusing on shorter adventures.
Near the end of the first day, after walking several miles, I was hungry, my phone battery was about dead, and it was starting to rain. I was a little lost, and I felt confused about why I was wandering the suburbs by myself. By that point, I had wanted to be settled into the airbnb I was staying at, having quiet time to be able to take my first chemo pill in a peaceful, intentional way. About that time, eight wild turkeys walked across the sidewalk in front of me, gobbling, squeaking, and dragging their feathers against the concrete as they passed me. After they passed, I made it to my airbnb, with some Chinese take-out I picked up along the way.
I texted a few friends, told them what time I was going to take the chemo, and asked them to join me in the intention that the chemo compliment the river in washing away what is in the way of life and love.
In praying recently with my friend, Christopher, he had the image of an open, expansive field in front of me. Out of silence with my friend, Beth, we agreed that my job now is to let the Earth and river blend with my body. I welcome the open field of possibilities in front of me, and welcome the blending with the land and river now, and not just after I die.
It is fortunate that the river is my primary treatment, because I might not be able to do chemo very long. My platelet count is close to being low enough that I can't do chemo. My platelets are still damaged from the previous times I've done chemo, and they dropped a little this past week, maybe feeling afraid of this next round of chemo. In preparing for the chemo, I made a commitment to myself to increase my dose of time at the river from at least a half hour each day to at least two hours per day. As the chemo dose might need to go down, the doses of other forms of healing might need to increase.
I welcome your help in surrounding the chemo with that expansive field of possibilities.
I decided today to start Temodar, the chemo pill that I’ve done before, and that the Mayo Clinic oncologist recommended for me now. I also decided not to do the more intensive kind of chemo that my primary neuro-oncologist recommended. There are some clinical trials in other locations that I also decided not to pursue right now.
In the absence of medical consensus or a standard practice for my situation, it felt like more of a heart and Spirit decision.
Sometimes in this decision making process the reality of love as the foundation was so clear and immediate. Other times it felt like I was spinning and disoriented, unsure of the reality or accessibility of that foundational love. Sometimes, I couldn’t tell the difference between magical, delusional thinking, and a healing act of faith. I need many reminders and re-orientations back to the foundation. This weekend I sat in silence at different times with Christopher, Bruce, Nancy, Beth, Jenny, and Isaiah, and each time I felt that re-orienting. My friend, Wendy, left a beautiful comment on my last post here, about the shift she experienced from tears about what my family is carrying to a tender smile about the ways we are “abiding in a field of great love.”
When I was more grounded in that field of great love, it was clear that the decision of which chemo I do isn’t the most important question facing me. At one point it was very obvious how closely great love was working in partnership with my friend/doctor, Peter, and how fully I could trust and surrender to that. Not that it is all up to Peter, but it is all up to great love and Peter is one beautiful vehicle for that.
I usually need to stay focused on listening for and taking the one next step toward healing and love. If I try to see too far, I usually stumble. I know in chess and many other places, it is quite beneficial to plan several moves in advance. In matters of the Spirit, I don’t have this gift. I trust there is a larger force of cohesion weaving the steps toward love together.
Last Friday, when my neuro-oncologist asked me, in a pointed way, which chemo I wanted to do, so we could get started on it the following week (now this week), my response was “I want talk to Peter.” That wasn’t answering the question he asked me, but I knew it was the next step. Then after talking with Peter, I knew I needed to spend a lot of the weekend sitting at the river. At the river, I realized I needed to write my neuro-oncologist another letter, about how difficult the meeting with him on Friday was for me, and the kind of partnership I was asking for with him moving forward. I empathize with him for having to deal with my repeated, emotional letters. Then yesterday, the next step was meeting with another neuro-oncologist at the U of MN to talk through the options with her. She and I talked through multiple possible steps, and I started feeling lost and overwhelmed again. She’s wonderful, and my confusion in that meeting helped me return to the one next, simple step, which Peter had already affirmed. I’ll start the chemo pill with my current neuro-oncologist, and adjust as we go. It is less toxic than the other treatment options that we’ve considered, and has the most research behind it, even though it doesn’t promise long-term impact.
The field of great love, that all of you help cultivate, is what is most important to me, both in seeking physical healing, and in healing while dying.
I've been having headaches for the past month, but both the neurologist and I were surprised when they found a tumor in an MRI this week. They did a second MRI yesterday, and I have a consultation appointment with a neurosurgeon on Monday. I'm guessing they'll plan a surgery within the next week or two. We don't know much about the tumor yet, including if it is cancerous or not.
I have felt surrounded by loving support. I'm very grateful for that. I have felt scared, sad, and numb--but I have felt the love of friends and family more deeply than anything else so far. I welcome more of that!!
Physically, I'm mostly feeling great right now, with just a tiny amount of pain on the back of my head.
An image that I'm holding is that this tumor has come with a message, asking me to slow down and pay attention in new ways. I'm also imagining that the tumor has served its purpose, and that, a couple days ago, it started to shrink. I haven't had any headaches in the past few days. I invite you to hold this image with me, of this tumor shrinking and melting in beams of love.
As you may know, I'm quite into that spiritual stuff. I understand this journey as an invitation to become closer and closer in intimacy with God and the source of life--both for me and those I'm connected with. Sharing that path with me and letting me know of your journey is about the most supportive thing I can imagine. I also know many people I love aren't into the spiritual or religious stuff, and I look forward to welcoming love and support in many other ways too.
I'm very grateful that you are with me on this adventure. Jenny and I will put updates on this page and also let you know ways to be supportive and connected.
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