In the last couple weeks, I think my trouble speaking and writing has gotten a little worse. Jenny helped me put together my snippets of thoughts to weave this post.
After the partial seizure two weeks ago, in talking with my doctor / friend Peter, he said my comfort is very important and it’s a-ok not rush to do another MRI sooner than scheduled, even though there are some subtle new symptoms.
I think my interpretations from both Peter and my oncologist are clarifying that there’s a good chance there is an increasing advance of my cancer, and there may not be an obvious next treatment for it. They did increase my anti-seizure meds and steroids to help stop seizures and keep swelling down.
In the last few weeks I’ve had more frequent and strong waves of sadness, sometimes while being held by Jenny. I’ve had more times of crying, often cuddling with Jenny, with concern about my communication and fear of leaving my family.
After the last seizure, I took a short break from walking by myself. But now I’ve returned to walking. Jenny said something like, “dying wouldn't be the worst thing.” Not that she wants some accident to happen when I’m out, but we both know that time by myself by the river is essential to me. I think that Jenny and I made a choice to take that risk.
This past week I walked more than a dozen miles along the river. It sometimes feels like I need to keep pushing myself to walk by the river to stay alive. There can sometimes be a lot of freedom in an advanced state of terminal illness. I want to be in the balance of surrendering to the crying and also taking creative risks to move toward what’s alive, as Dylan Thomas encouraged us to “rage against the dying of the light.” I want to also make space for unexpected discoveries beyond the raging, because raging doesn’t always sound fun. Although raging can intensify aliveness.
I’ve been feeling more loneliness, fear, sadness, and irritation, but at the same time, I’ve felt an increased emotional warmth from others and from myself. Like a physical bonfire beneath me that makes more space for the different emotions. I think that the images and feelings of connection I’ve heard from so many of you has added to that. Images from people like Dev eating his first oatmeal with us. Michal imagining our family eating her favorite hummus with her family in Israel. I felt connected with Erin this morning, while watering the plants she and others have given me for my indoor forest. I trust the connection of all these relationships will keep holding me. For most of my life I haven’t felt nearly this amount of warmth either for myself or for others and I want to make use of it. I want to keep cultivating the feeling of warmth with you.
I might live for many years, but it does feel like I’m in another phase that feels like a particularly thin place. I don’t want to miss this period, especially in terms of receiving and sharing love.
In the last six months I’ve had a series of sobering conversations with doctors. Not as pessimistic but realistic, compassionate conversations about my condition and options.
Last fall, my previous neuro oncologist said that if my tumor crossed to the other side of my brain hemisphere, it would be the end of the storytelling work I do with doctors and patients. The cancer crossed to the other side of my brain this spring, but this past week I was able to speak to new nurses, giving them a patient perspective (something I’ve done a number of times over the last few years). I continue to be grateful that stories can change.
This spring, a Mayo doctor said that tumors will often grow back after a couple months after the type of surgery I had in May. It’s been more than a couple months since my most recent surgery and my last MRI was stable. I’m paying attention to see what my next MRI has to show, which is scheduled for this Friday and the meeting with the doctor to find out the results will be the following Monday (Sept. 23).
Yesterday while sitting by my favorite tree next to the river, I was reminded of my favorite quote by John O’Donohue. “I would love to live like a river flows, carried by the surprise of its own unfolding.” I’m grateful to be unfolding in this mystery with all of you.
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Yesterday morning, I had a small seizure while I was talking to my friend Betsy here at our house. We were catching up on each others lives. In the middle of our conversation, I started to either laugh or cry hard with expressive gestures. According to Betsy, I reached out my hands as if to say come closer and stay away, still laughing/crying. And then I started to look around and look as if I was having some kind of hallucination. After a bit of this, I asked Betsy if she saw an opening. Apparently I was moving in and out of the conversation and "regular" reality, sometimes talking and sometimes seeming far away. But I seemed to be mostly ok by the time she left.
After Betsy left, Isaiah came home and found me confused. Jenny wasn't home, and he wasn't sure what was happening. Isaiah said I seemed restless and wanted to go somewhere. So together we took a walk to the river.
In the last few years, I've spent much of my time walking, biking, or sitting by the river. Every once in a while, I'd write a short note to myself about an inspiration, to write something longer, or for a project. When I get back home, I then look at all the random notes, and integrate them into a larger plan, or talk, etc. Lately, it is very hard to integrate the ideas into a cohesive email, document, etc. (Jenny is collaborating with me on this post, integrating my notes, talking it through, and typing.)
It feels like my brain gets tired and stretches the organizing part of my brain. Talking with my dear friend Pat the other day, I said that it's like I’m out in the falling leaves of fall. It feels like I’m quickly moving around trying grasp the leaves as they fall. Within my brain, it feels like I'm trying to make a pile of thoughts. Normally, I can make those fallen leaves into a cohesive picture. But in the last weeks, the wind in my brain makes too much energy to keep those leaves in a pile. Sometimes, after enough energy, I contain the leaves into a picture, but my brain is quite tired. Then I fall down and feel sad and afraid that I can't finish the project I wanted to start.
After Jenny got home yesterday, shortly after my river walk with Isaiah, we pieced things together and realized I'd had a seizure. After talking with my doctor, Peter, we decided it was ok to not go to the ER. Jenny and I took another walk to the river to help feel grounded. I didn't remember I had already taken one with Isaiah -- my draw to the river is so strong that my body was pulled toward it even when I wasn't fully aware. Also, Isaiah knew exactly where to take me when I said I wanted to walk.
The part of my brain that creates projects is beautiful, and I can be addicted. I have always had a list of ideas and projects to start with others. Now that my brain is challenged by managing projects, I want to move toward relationships, emotions, and imagination. Now I feel even more dependent and intimate with love. I spent a lot of yesterday crying about Jenny and how much I love her. And about Isaiah and Grace.
Peter, who I still love, stopped by our house to talk with us yesterday. He along with Dr. Neil, my neuroncologist, increased my anti-seizure meds, and he affirmed our choice not to go to the hospital. He reminded us to appreciate good days away from the hospital. Along with settling times at the river, I'm appreciating the physical enjoyment of taking off the optune device on my head after a few days with it on, and the glory of a warm shower on my head.
Even though my brain is finding it hard to organize things, I'm still excited about a healing stories event my amazing colleagues are putting together in November. Here's more info: https://www.eventbrite.com/e/the-art-of-healing-stories-tickets-64174974075
In the past two weeks, I started a new chemo and also a medical device, Optune, that I wear on my head. I expected the cap to be pretty smooth and the chemo to include some difficult side-effects. But the last two weeks were the opposite. The chemo has gone smoothly so far with just some slight nausea, and the cap ended up being more complicated. At times I’ve felt discouraged by the limited, complicated treatment options. In the moment, however, I feel more trusting of the do-able next steps.
As I was second guessing both of the treatments I started, I was thinking of Vaclav Havel's definition, "Hope is not the conviction that something will turn out well but the certainty that something makes sense, regardless of how it turns out.” After some despairing tears at the river, I had some fleeting moments of rightness and acceptance of the treatments we are slowly leaning into with gusto.
Jenny shaved my head, and helped me put on the medical device, which is designed to stop cancer cells from dividing in my brain. The cap, Optune is supposed to have a little warmth in the cap while I’m wearing it, but after we turned it, I started to feel a strong pulse on my forehead every two seconds. I’m supposed to have the cap turned on almost all of the time, both day and night. The pulsing was strong enough to throw me off-balance, when walking, biking, or thinking in concentrating ways. We worked several times with the device company to try to make it feel better.
There aren't many evidence-based treatments for Glioblastoma, but Optune is one of the treatments that at least points to some research that shows Optune can increase survival. On average, the survival of people using Optune increased by about 3 or 4 months, compared to people who just took chemo. While the possibility of just 3 or 4 additional months might not be dramatic, especially as my kids are still in high school, that time means a lot to me. However, the recent days of using Optune weren't tolerable for me. I've always known I'm a sensitive guy, both to physical and emotional sensations, but the extreme zapping feelings I felt were unusual for most Optune patients. I wore Optune for three months shortly after my first diagnosis, but this month has been much more uncomfortable. Maybe I've gotten more sensitive in the past four years.
David, my first work supervisor, many years ago, was a mentor for me. Like me, David was also a very sensitive man. David joked that if each of us were insensitive enough to allergens and other emotional and physical disturbances, we can all live with peace and ease. I'm thinking this week about David. David was a therapist and facilitator who was maybe the most gifted person I've met at attending to and expressing subtle energy between relationships. He also suffered from depression and often found it painful to be in the world. David took his own life some years after we worked together. Shortly before he died, David and I had an honest, hopeful conversation about what we both learned about conflict. I still frequently mourn the loss of his life, and for the ways the world doesn't make space for our sensitivities and gifts. The only photo I have of David is one where he and I were playfully illustrating the sometimes deep power struggles and conflict in our relationship. David's ability to laugh at our tensions will always be opening me to new opportunities of growth.
When David and I worked together, David would take me out to breakfast every Monday. He would always insightfully ask about and guess what was happening in my inner life. I would often feel mad that David knew much more about my feelings than I did. David’s insightful listening still helps me feel and discover hidden parts of me.
Yesterday, the medical device staff helped me install the cap in a different way on my head. Since she installed my cap, I haven't felt any zaps!
In writing this post, I've been reminded again how easily twisted my language can get, both in writing and speaking. I can feel sadness and anxiety as I try to untangle words from the spider web that has grown in my brain from surgeries and tumors in recent months. I aspire to be calm and accepting of the changes in my brain, but grasping and messiness are sometimes part of those activities as my mind settles. If I didn't have Jenny's editing and loving ears, I'd feel much more lost. Of course being lost in all of your arms is just where I want to be.
This week, I honor David Miller, and all of the ways that conflicts and sensitivities open us to new horizons, in chemos, zaps, and other complicated relationships.
In addition to all those "yeses," I also believe in many important "nos" in healing. For example, "I've been taking antibiotics for six months, because of an infection with my spinal fluid after my surgery last fall. It was a risk to stop the antibiotics, but I pushed for my doctor to approve me to stop the antibiotics. I'm celebrating that small "no" to antibiotics for now.
Today, Grace and Jenny helped me fatten up at my favorite restaurant buffet, so I'll have some extra pounds to burn, to help be a buffer for any coming nausea. While we ate at the buffet, a nurse and a care guide from our "old" oncology clinic called, expressing their connection as we switch to our new clinic. I know there are important boundaries and distinctions in the choices. I want all approaches for healing for all of us. The more experiences I have of health, the more I believe that all healing comes from grace, and always grows out of relationships. I'm very grateful for the healers and friends who are making miracles possible.
Today, I had my first MRI since the radiation I had last month. My belly was full of nervous tightness as I went into the appointment. It is fairly common to see new cancerous growth after as many recurrences as I’ve had. Sometimes I still get my words a little mixed up when I speak, which I sometimes worry is from the tumor growing.
But today, my oncologist said he was happy with the MRI, and that he thought both the tumors on the right and left sides of my brain appeared stable. Yes!
I still need to decide on plans for the next steps for my treatment. Today, my oncologist said that we need to proactively treat the tumor because it is very close to the language area of my brain. If we wait until we see my language functioning changing, it might be too late to stop major damages.
Later this week, we’ll go for a second option at the Mayo Clinic to talk with them about treatment options too. At this point, we’re inclined to include the Optune device that I’ve used before as one part of my treatment. Jenny will help me keep my head shaved, and I'll wear a battery-powered science-fiction device that constantly keeps an electronic field operating in my head to stop cancer cells from dividing. There will probably some chemo, and other drugs, such as Avastin, in the mix. For now, though, we have the luxury of taking the input and discernment slowly for a few days. I also have the treat of staying alive longer!
Last week I took my first trip myself outside of Minnesota in my almost four years of living with brain cancer.
On my trip, my friend Beth, and her friend, Beth (it is confusing) eagerly took me to play in the ocean waves with boogie boards, a first for me. At one of those times there were some ducks swimming a little bit away from the beach. I held the board and rode the waves out close to the ducks, feeling giddy to be bouncing along up and down the waves with them. I felt like I was in the flow of a larger life, blissed out, following along with wherever the ducks led me, lost in time and space, forgetting all about the MRI and cancer plans coming up.
About that time, both Beth and Beth, far away from me both started eagerly waving their arms and yelling in my direction, motioning to me. I didn't hear or see them at first, lost in the flow with the ducks and waves--until their calls and motions helped me realized they were trying to get my attention and bring me back to shore. They worried I was getting too far out to sea, concerned I was getting lost and too deep. Eventually I paddled enough to get close enough to hear them, as they convinced me to get back to safety. I'm so grateful to be held in supportive safety, along with freedom to get lost in play. I hope my next medical treatments could be like that, holding supportive boundaries for me to play with, letting me ride the waves with forces much larger than me, like oceans. As I got back to solid ground, Beth said, "I bet this is going to be a part of one of your CaringBridge posts." Of course she was right, complete with some metaphors about how it applies to healing, love, and mystery. I'm predictable, but it makes me happy, especially with people keeping me grounded, and giving me places to play.
"And we're stayin' alive, stayin' aliveAh, ha, ha, ha, stayin' alive, stayin' alive
There are plenty of opportunities for both shame and joy in terminal illness. Since my radiation this past month, some chunks of hair on the left side of my head keep falling out. My bald spots look distinguished, framing the latest scars from surgery, with some new grey hairs from radiation. I have an MRI on July 29. After the MRI, there’s a good chance my oncologist will recommend more chemo, maybe providing another opportunity for baldness.
It is easier for me to laugh at part of my hair falling out than I can about other things, since my bald spots are so sexy, and because I don’t care much about my hair. My cognitive and verbal abilities are usually harder for me to hold as lightly. I’m kind of attached to speaking and thinking, which will probably provide me many opportunities to reconsider my own identity. I pretend that a consistent “me” is who I am, even as it changes and dissolves. As the “me” that I’m attached to dissolves, and takes in more of “life longing for itself”(in the words of Khalil Gibran) I have a lot of faith (sometimes) that life beyond the constraints of who I think I am is way more interesting than reality.
In the past week, I’ve started using the term, “aphasia,” to describe the difficulty I sometimes have when my words get scrambled as I try to speak. I can get stuck as I try to say a particular word I want to say, when I try to connect my brain and speaking. This can happen to all of us, but I’ve noticed it more since my two recent brain surgeries in May. The language changes I’ve seen are usually subtle, or quickly corrected, but I continue to notice them. The aphasia is probably impacted by the brain tumor on the left side of my brain, which is close to a main area that controls language in the brain. Differences with language and cognition might also be impacted by the radiation this past month and swelling from treatment. Even though there are probably physical reasons that are leading to these mental changes, and I know “it isn’t my fault,” I can quickly feel embarrassed when I make a small confusion or pause when I’m speaking. I’ve found it helpful to sometimes use the word aphasia as a way to acknowledge to myself and others that it is an objective disorder that can be seen and understood. In contrast, I’ve sometimes tried to hide to myself and others that something is wrong, feeling anxious if I say something confusing. I can feel afraid that the confusion is progressing, or speculate on the causes of it, such as the tumor growing. If I feel anxious or try to hide it, I’m less likely to speak clearly in that moment.
A lot of my work in the past few years has included public speaking and storytelling, which now occasionally triggers anxiety about speaking. I still find public speaking fun, though. I was recently interviewed for two podcasts about healing. I stumbled over my words once during an interview, but as a part of the interview, I said that my speaking can get tangled as a part of the brain tumor. After I acknowledged it, I felt more relaxed, and less worried about hiding other stumbles. I sometimes feel shame that if I can’t speak or write meaningfully, then who I am won’t be as valuable to me or others. Part of what I’ve remembered this week about both aphasia and my bald spots are how easily my mind can be seduced by the voice of shame, telling me that I’m bad because of impediments like that. There are so many opportunities for shame, even without cancer! Now I have even more opportunities to think I’m not being as active a parent or husband as I want to be, or lacking as a contributor to society, and more! I can also be paralyzed by doubts that I’ve made the wrong treatment decisions, and that I’m not using precious time while I’m alive and feeling good. I do want to keep learning from mistakes I make, but I want to use the seductive voices of shame to be reminders of how funny those voices can be as they try to convince me to get stuck thinking I’m a bad person because of medical conditions I had nothing to do with. I want to see the shame as a friendly pointer to the grace that vulnerability makes possible, letting shame take me into more aliveness, even if my aphasia can’t smoothly say what I mean. I find it ironic that terminal illness can sometimes free me up to be lighter in relation to shame.
I get many other opportunities to relate to other limitations, like when I frequently bump into walls (and other people) because I now don’t have any left peripheral vision and often don’t recognize faces, or have much sense of direction. Feeling embarrassed about any of these things is silly, but shame must keep showing up for some other helpful reasons!
Brene Brown says that guilt is saying I’m sorry and shame is saying “I am a mistake.” With physical or mental abilities that don’t work for me like they used to, it can be easy for me to tell myself that I am a mistake--that I’m not whole and able. Instead, I want the shame to remind me that my brokenness is a part of a superpower, made available through grace, and through laughing at the absurdity of thinking I understand and caused all these changes.
The longest term shame in my life has been about shyness, not being confident to express myself and connect. I think weaknesses we already had in our personalities can sometimes be amplified through illness or health impairments and/or open us up to new freedoms. Aphasia or other forms of my health conditions can work both to amplify limitations, and also open new opportunities for connecting in new ways, such as by being more transparent about vulnerabilities, which can help me feel more connected. The joy and shame seem to often go together for me.
Thanks for laughing lovingly at shame with me, including the big hole of regret we can fall into in preparing for death, afraid we aren’t aren’t good enough to receive the love that comes with and before death.
The more time I get to ponder death, the more fully I believe that there's always work to be done in receiving more healing and love at any time we relate to death, before and after!
Today I completed my series of 15 radiation treatments over the past month. This is the third round of brain radiation that I’ve done in the past three and a half years. I’m grateful for this treatment option, and I feel ambivalence and dread about the previous and coming rounds of treatment, coming with their own toxic, unproven benefits. The harm and healing are mixed together.
When I was about 14, I was mowing the grass in my family's yard. I was very afraid of snakes. When I saw a snake, which was in retrospect a garter snake, I grabbed a hoe next to me, and frantically grabbed the hoe and repeatedly sliced the snake, as it squirmed and died. I still feel ashamed about my fearful, violent reaction.
As I seek to heal with cancer, I often try to relate with the animals and other life around me, but my violence against that snake years ago reminds me of my harmful reactions to natural life around me. The healing and harm are mixed together within me and around me. The radiation and chemo I’ve taken are also purposefully harmful to my body, as I seek to heal. I haven’t yet noticed any side effects from the radiation. My occasional verbal confusion still happens when I speak, but it hasn’t gotten worse. Given that I have aggressive rumors (I meant to say "tumors," but "rumors" sounds better) on both sides of my brain, I’m very fortunate.
Last week, my friend Cathy Wurzer wrote a beautiful blog post from our experience sitting together at the river, taking in the beauty of the river and tree. At the same time, we saw an injured dragonfly next to us, and we reflected on the complexity of harm and health.
In three weeks I’ll have another MRI and talk with both my ongoing oncologist and a second oncologist I often meet with at the Mayo Clinic, to consider plans for my next treatment. At previous appointments, both oncologists have suggested different kinds of more harmful, intense chemo for me that would both likely have strong side-effects, without much evidence of benefits. It sometimes feels hard to hold both the potential violence and healing of all these treatments. The level of my platelets and other blood counts might also reduce and simplify my treatment options, if my platelet counts aren’t high enough to do any version of chemo. I feel confused by all the options we're starting to consider.
This past weekend, I helped co-facilitate a retreat about contemplative ways of being in New Hampshire, thanks to the Internet (I stayed in Minnesota), powerful partners, and prayers that helped us give and receive connections from a distance.
In the midst of heaviness about cancer treatment, I was very glad for companionship at the retreat to help me move beyond cancer treatment and dread. During the retreat, I sat with the Mississippi River, while the other people brought to mind the rivers and other sources of life they each live with, taking in the ways each of those rivers offer and give life to us. I love hearing the ways that bodies of water are relating with each of us, bringing questions, challenges, and support.
At the river today, a spider was sitting next to me, with poison ivy behind me. Hopefully I wasn’t as frantic in my response today as I was as a kid, but I can feel that my urge to react without thinking, full of fear, is still a big part of me. Thankfully the river, and each of your connections, provides a little buffer to lessen some of that harm.
I’m still doing radiation every weekday. I had been doing chemo pills as a supplement to radiation, but I’m on a break from those now, because my platelet counts are too low for the chemo.
I’m still adjusting to my changing brain. I’m not having any new symptoms, but I still have mild headaches at night, my thinking moves slower, and I sometimes mix up my words. I especially mix up gender pronouns, like him and her. Maybe my brain has an unconscious drive for gender fluidity. I feel more compassion for the ways that my brain, and all of our brains, keep changing to become new brains. Knowing that there are tumors on both the left and right sides of my brain, I’m more aware of how we are each in the midst of physical and internal transformation. As a part of the new “me”s that I keep becoming, I’ve felt more restlessness in my identity and purpose, more frequently unsure what is mine to do. Having probing conversations about the meaning of life is something my brain doesn’t always have the ability to do. I’m not ready to give it up, though!
For those of us with terminal or chronic illnesses, I think that navigating constantly changing, and sometimes dissolving, purposes, can be one of the most complex parts of serious illness. I deeply believe that each of us have distinct gifts and contributions for any particular situation, but it can be quite disorienting and takes a lot of creativity and initiative in the midst of destabilizing illness. To move from a full-time job to reduced abilities that need care can take a lot of re-adjusting. I feel lucky that a lot of my work has been doing self-employed, volunteer, collaborative, creative work that has been outside of full-time jobs. I think that has been a helpful preparation for terminal illness, yet after my two surgeries last month, I have felt more rudderless. I’ve started working with colleagues on events we’re planning, but have felt stuck in knowing how much capacity or reliability I have to follow-through on tasks for that day, or in the coming months. I’m grateful for colleagues that can carry things through when I can’t.
Losing feelings of purpose and identity are some of the main things I fear. I’m also curious who I am without those identities and abilities.
I’ve been reflecting on the practices I need to continue to cultivate my purposes as my abilities change. Some things that I seem to need are:
A foundation of quiet listening, even when I don’t have confidence or clarity where I’m headed that day. I continue to sit and watch the river, trees, and birds for about two hours a day. When I don’t feel motivation or direction for the day, I find the river still helps steady me, and provides a foundation where clarity and direction can emerge. Some new direction might show up, or the river might just help settle me.
Regular rhythms of meaningful connection. I’m dependent on cuddling with Jenny each day, seeing my friend Janne each week for breakfast, weekly dinners with friends Emily and Elizabeth, having times of meditation and prayer with Beth, Bob, and others. Without these rhythms, I’m afraid I might float away.
Wash the dishes. After my surgery, I wasn’t able to wash dishes, take out the trash, or do many other practical things for our house and family. I can sometimes have quite an overdeveloped sense of responsibility. I can also be a slacker sometimes. After I recovered enough to be doing things after surgery, it was a time that I started doing dishes again that got me out of my funk, and feeling more engaged and purposeful in the world. Doing practical things increased my confidence about other purposes.
Find joy: I get a unusual amount of joy from my morning spinach/fruit smoothie each morning, and my afternoon chocolate and nut smoothie. Before my friend Tim died a couple months ago, we compared notes about our shared smoothie appreciation. There’s something to it as a palliative care treatment. My puritan blood needs to consciously seek out pleasure.
My understanding of my purpose today is to make use of the ways my brain and health roller coasters help me move between and visible and invisible worlds, and find ways to share and listen to some of those thin places. Lately, I’ve felt drawn to others who are feeling intimacy with death, for themselves and others. Shortly before she died, my Great Aunt Ruby would come in and out of consciousness, while saying, “it is so wonderful...I had it wrong, life is about love.” My aunt, and others, keep pointing me toward the possibility that these thin places can be an entry that beckons us all.
My hope is that I can be a part of larger forces that use me as an instrument towards wholeness, even when I don’t know what my identity or usefulness is. While I want to grow, create, and contribute--the primary motion I feel I have the ability to do is receive with gratitude. I’m reminded today how much I need to practice cultivating my own evolving sense of purpose, not as a static direction I follow, but as an ongoing relationship that continues changing.
Tomorrow, I’m starting three weeks of daily radiation and a low dose of chemo pills, to treat the tumor on the left side of my brain. Hopefully, the recent surgery removed a lot of the new tumor, but my doctors assume there are still cancer cells active in that region. I feel pretty trusting that radiation is both a helpful treatment and one that isn’t likely to have lots of risks, since I haven’t yet had radiation in that part of my brain. Many things remain uncertain, though, such as if and how to treat the rest of my brain after the radiation.
When I met with my oncologist last week, I asked him how he currently saw my prognosis. He said that he hasn’t previously seen someone with this kind of cancer growing on both sides of their brain survive for many years, but maybe I could be the first he’s seen.
My mental abilities appear still feel slower than after the last surgery, but the changes are subtle, like when I could feel myself stretch to do the self-check-out lane for produce at Target. Or other times I need to take breaks when writing to keep my thoughts clear. I go in circles in thinking of what I want to write more than I used to. I sometimes mess up a word I’m trying to say, but I think the main ideas usually come through.
When I work with my health story colleagues, helping people prepare their stories, two themes we work with are fleshing out both the agency and communion within their stories.
In cultivating my own agency, I want to be proactive as a part of choosing my treatments, in partnership with my doctors, and not just passive, and I want to pursue wellbeing in my diet, exercise, relationships, and attitudes. At the same time, I want to surrender, receive, and accept what is outside my control. I find that the combination of agency and surrender is a quite a dance, with lots of grace needed to mix it together.
I’ve still been getting lots of time to sit at the river each day, one of the main things that helps me notice and receive deep connection and communion. There’s a particular tree that leans into the river that I’ve become quite attached to. I often feel connected there with Bruce Kramer, who spoke beautifully as he approached his death, interviewed by my friend, Cathy Wurzer. When I sit under that tree leaning into the river, I often have internal conversations with Bruce about the process of healing in preparation for dying. Though I didn’t meet Bruce when he was alive, I’ve had many conversations about choices we each made, or want to make, about treatments, quality of life, and opportunities for healing. Bruce made choices such as not getting a breathing tube, even though it might’ve extended his life. I find both the influence of Bruce and my tree companion nurture space for both choices and connections.
I was reminded about this paradox by my friend, Debbie A, who reminded me of Rumi’s invitation to “Be helpless, dumbfounded, Unable to say yes or no. Then a stretcher will come from grace To gather us up.” I honor both my helplessness and power, both in connection with the trees and friendships that hold me.
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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