A bunch of hours after sitting and waiting and wondering, Dr. Nagib, Michael's surgeon met with Michael's sister Christy and me to give us an update on the surgery. Turns out they weren't able to get the catheter they were threading into his brain to the right place. They made multiple tries, and couldn't get it into the tumor. Dr. Nagib knows that speech is very important to Michael and was worried they were getting too close to the speech area. So they stopped the surgery without heating the tumor with the laser. I'm grateful to Dr. Nagib for knowing what's important to Michael and for being careful. Although it's a big bummer to go through all that and still have a tumor. (Michael suggested the title for this post.)
Over the next few days we'll be talking with doctors about other next steps. Luckily there are a few options.
I'm signing off for now because the kids have band concerts and track meets tonight. I'm so grateful for all of you for cheering us on in so many ways.
I'm attaching a blurry photo taken whole riding my bike this morning of the amazing 5:30 am sunrise. The photo doesn't do it justice. I love starting a surgery day with Michael on our bikes. (Don't worry, he doesn't bike home.)
I'm planning to ride my bike to the hospital tomorrow morning, for a 5:45 am check-in for my 5th brain surgery. The surgery is currently planned to start at 7:45 am, though, that might change. There's a team of physicists and techs flying in from Chicago to help set up the laser system. The same surgeon who has done all my previous surgeries, Dr. Nagib, will oversee the process. They'll drill a somewhat small hole on the left side of my head, which they'll use to insert the laser in, and burn the tumor from the center of it. Jenny will post updates as she can.
In recent days, I've heard ringing and some other sounds in my left ear, which I think are from the tumor pushing against my ear canal. I had similar sounds in my right ear, before my initial surgery on my right side. I'm also imagining the ringing as foreshadowing of healing to come.
MLK spoke of freedom ringing out from Stone Mountain in Georgia, a symbol of the cancer of racism. I pray that freedom also ring out from lasers burning away cancer in my brain. I imagine a heat that will be amazingly precise, so that it doesn't damage my language, or other abilities--and, at the same time, reverberates out freedom and healing to release any other cancerous cells in my brain, and a healing that ripples out through all of our relationships, releasing other cancers that get in the way of wellbeing.
The urgency and passion in the attached song's call to let it ring feels relevant to my situation too--the urgency to say and release what I need to now, while I know that I can--coupled with the surrender of knowing it is primarily a time to receive, from my deep trust of Dr. Nagib, from all of your prayers and love, and from grace beyond any imagination or words I have. Let it Ring.
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.
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.
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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