Journal

Journal entry by Michael Bischoff

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. 

Journal entry by Michael Bischoff

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.

 

Journal entry by Michael Bischoff

In the past week, I’ve only had mild headaches. I’ve stayed out of the hospital, and I haven’t noticed trouble with language or movement, but I’ve felt more mental fuzziness and fatigue since my surgery. That could be from growth of the brain tumors, swelling from the surgery, anxiety about confusion, or passing sensations. Overall, I feel less tethered, and more floating. My brain feels more easily worn out by conversations and analytical thinking. Yesterday I felt mentally worn out by putting a sheet on a bed.


I have an appointment tomorrow with both my surgeon’s office to evaluate the surgery recovery and plan next treatment steps with my oncologist. My guess is that they’ll recommend some additional radiation for the area around the newest tumor that hasn't had radiation yet. I don’t have any new brain scans planned for this week, just the ones we’ll review from my last surgery. We’re all going on some guesses of what is and isn't changing.


Yesterday, my friend Bob reminded me of the value of being centered, but not always looking for grounding. At times, when I feel like a boat far out at sea with waves that knock me over, I have urges for anchors that steady me, but the attempt to hold onto steady anchors can knock me over, instead of allowing myself to drift.


This week, I sometimes don’t notice my bearings or know what I need, but sometimes I’m still buoyed, like the day I spent several hours watching the rain on the porch last week, or watching the ferns blow in the wind in our backyard. I need to be conserving my mental energy and interactions, including writing things like a CaringBridge post, yet I also want to reach out to you from the mysterious worlds I’m in, with gratitude for your care. Waves of sadness, and the tentacles reaching out to me can steady me.

 

Yesterday, my friend Myron asked me what I wish for, in the place I’m currently at. My wish is to live and die rejoicing, not rejoicing that denies what troubles me, but that makes space to feel and move with the waves.

 

Journal entry by Michael Bischoff

This morning, My surgeon said I could go home from the hospital today. I appear to be talking mostly normally, though I was sometimes a little confused about things like heels and toes. There could be swelling from the surgery which impacts my language, but is hopefully just temporary.
In the surgery yesterday, they found an additional area of tumor, so they burned both the intended tumor target, and an additional spot adjacent to the tumor we didn't know about before yesterday.I was sad to see that another tumor had already grown back from last week, which is sobering, but my sister pointed out that if they had not waited a week to do the original surgery a week ago, maybe they wouldn't have gotten the expanded tumor.

My steroid dose can make me emotional, which frequently comes when I'm teary about my family, Peter, or the trees outside my window. The steroids also keep me awake at night.

I thought I'd try typing this, and see how coherent I get. I continue to feel the ongoing strangeness, and the rejoicing for the successes in the surgery. I've been spending a long time sitting on the front porch today, enjoying the sun, listening to podcasts, with a short walk to the river, trying to take it easy. It feels like my brain is moving a little slower than usual, but I imagine two surgeries in the past week kind of catches up to you. I'm grateful for Dr. Nagib's skill and precision, and glad to still be in touch with you.

Journal entry by Jenny Larson

Michael is in the post surgery recovery and surgery went well. Yay! I talked briefly with the surgeon, he's not known for long discussions. He said "the surgery went well," which means they were able to burn the tumor with their fancy laser device. I'm relieved.

A little bit ago they summoned me to the phone to talk with a nurse in the recovery room. I wasn't sure what was going on. But Michael was awake and had been asking about the surgery and if it went well this time. I guess a nurse doesn't really have that info. So I got to talk to him and tell him it went well. He sounded groggy, but good. So sweet to get to hear his voice.

And now I'm being told he's moving to a hospital room, so I get to go say hi. Thank you for all of the love and support, we feel it deeply.

Journal entry by Michael Bischoff

Tomorrow, I report back for another surgery at 5:30 am, to try the laser procedure again on the tumor that has spread to the left side of my brain. I believe the surgery is scheduled to start about 7:30 am.


When I was about 10 years old, I was standing in line at a clinic to get a shot, next to a friend. Right before the doctor got to me, I grabbed my friend, bolted out the door with him, and ran up our Appalachian hills to hide in the woods. I didn’t get the shot that day, but I still did the next day. That urge to run is still with me, though.


Mary Oliver’s poem, “Wild Geese,” tells me that,“You only have to let the soft animal of your body love what it loves. Tell me about despair, yours, and I will tell you mine. Meanwhile the world goes on.” I’m finding it useful to gently coax my soft animal back into surgery, let myself cry next to Jenny for the things I can’t help her with, ask the river to soothe my urge to flee from soft vulnerability and into tight, repetitive thoughts. In the hours awake at night with headaches, I offer you my despair and listen for yours in hours in the places where our soft animals love what they love. I’m grateful to find softness in those places where our despairs meet.


This week, my healing story colleague, Mari, wisely introduced me to the diaries of Etty Hillesum, from her time in the hollocust. Etty wrote, “I know and share the many sorrows a human being can experience, but I do not cling to them; they pass through me, like life itself, as a broad eternal stream...and life continues...We should be willing to act as a balm for all wounds.”

In preparing for this surgery, Etty and Mary keep leading me gently through rigidity to the softness of those wounds. Etty wrote that, “It is possible to create, even without ever writing a word or painting a picture, by simply molding one’s inner life. And that too is a deed.” In times of pain or sleeplessness, I’m comforted by Etty’s reassurance that the molding of my inner life can be a creative, connecting act, even as I fall slowly and uncomfortably asleep. Etty seems to tell me that creating a hospitable atmosphere for our despairs and discomforts is a contribution.

I ask for your help not just to be less freaked out about pain and death, or about the best outcomes for my health, but to enter with you into that stream Etty talks about. In surgery and in recovery, I could use help entering into that stream, from friends who both help receive the treatment, and run with me in the woods. As I did at age ten, we can alternate together between running and surrendering.

 

Journal entry by Michael Bischoff

My medium strong headaches are still continuing sometimes, especially at night. Today we talked on the phone with my surgeon, who didn’t have any suggestions for med changes and didn’t think I needed to come into the hospital now. Taking warm baths help, and so do foot massages from my sister, and tears.


In this time between surgeries, I’m wondering what this time is about for me, in addition to some physical discomfort. What am I being offered, and what is asked of me?


Two different friends have suggested to me that the attached song, “Everything is Holy Now,” fits with the health journey I’m on. Friends pointing out the song to me is helping me see and appreciate this current stage in new ways. I’m finding their message helpful in relating to this time, when the space between here and the holy feels even thinner, just not more comfortable.

I believe that we see each other  into healing--noticing, with empathy, where we are at, and also seeing where we’re being opened to healing in ways we might not see ourselves. I trust your perception and intuition to notice what I might be missing. All of your comments of what you notice, and your listening mean an immense amount to me.


This afternoon, the step towards aliveness that felt most compelling to me was to squat under an umbrella in the rain, in the woods, for an hour. It ended up feeling refreshing today, but I'm sure I’m not always following the most inspired image of aliveness! I try to report what I’m noticing, and I welcome dialogue with you (in and out of words), to help in seeing and feeling where the holy is around me. You never need to leave a written response, but I want to let you know that your responses, on all levels, buoy me, especially when I might be disoriented in discomfort.

 

Journal entry by Michael Bischoff

My recovery from surgery is going well, but the last few nights I've had headaches most of the night that left me with restless nights of sleep.

Those restless nights have moved through sadness and shaking:

  • That I might die soon
  • For the weight that my family is carrying
  • With both the tumor and treatment now causing damage to the left side of my brain, for the ways my cognitive abilities will change
  • For family healing I don’t know how to contribute to

When I’m lost in the night, or the day, one of the main things I do is focus on a presence that I experience as irresistible compassion, which I associate with Jesus--a touch that softens and releases what I’m holding onto. I keep returning to Jesus as a reminder of that possibility and release.
To wake up in the morning, hug Jenny, and release some of those tears is also a deep balm for me. Tylenol isn’t bad either.


When I got up today, I was thinking of writing to you all, to help me understand where I've been and to find some grounding after drifting in restless lands, to feel more human and connected again.
Yesterday I talked with my friend Tyler on his way back from a work trip in Kenya, about how he talked about my healing with the group he was with in Kenya, and a participant who really took me into her heart, which also helped me move beyond the isolation of restless nights. All of your witnessing and receiving helps me understand where I am and what my intentions are.
Part of my intention is to lose my mind joyfully, and face the possibility of death rejoicing, welcoming both miracles and grounded honesty.
In the past week, I’ve made two mistakes in managing our finances that led to a bounced check and some transferred money lost for a while. They were both recoverable, but sobering reminders that I need to be cautious with what I’m doing. As my brain changes, I want to lose my mind both with caution and also boldness in:
Loosening my ideas about the world in ways that let life move more freely
Community that holds where I fall
In love and partnership with Jenny
In nature, blending even more with the river and the leaves surrounding them
Surprised by wellness, not just battling illness
Open to another forty years of life
Always returning to that irresistible compassion that opens and guides
With curiosity for who I am without language or financial management abilities
In an expansive relationship with time, including with ancestors, descendants not yet born. As Einstein, said, “the distinction between past, present and future is only a stubbornly persistent illusion."
With gratitude for tasty smoothies, good health insurance, resilient children, liberating stool softeners, wise doctors who know how far to go and when to stop, unexpected possibilities, and trust that some kind of healing is always possible. 
And laughing at myself and all my serious intentions. Please laugh with me and Jesus.

Thank you for coming with me in the places I go, and for taking me with you in the places I can’t go by myself.
Hallelujah Jesus.

Journal entry by Michael Bischoff

Thankfully, I'm back home from the hospital. Jenny and I have taken a slow walk to the river and back. The new tentative plan is to try the same laser surgery again, on the 31st, with the surgeon making some adjustments based on the first try.

I'm loving the images and themes many of you have shared in comments on my last post this morning, helping expand the story of yesterday's surgery. I can tangibly feel you helping give the tumor and the treatment the attention needed to clear the way for next week's surgery to release the cancer with ease. Keep them coming!And Jenny's exquisite care and radiance continue to overwhelm me with goodness.

Journal entry by Michael Bischoff

My pain and nausea are a little better today, I had a full breakfast, and I'm ready to play.
Yesterday, the surgeon said he wasn't able to get a safe shot at my tumor with the laser, once the catheter was in there, so he stopped the surgery.  I want to ask your help expanding on that story.
Some clinical trials do such realistic placebo surgeries that they do an incision and seal it up just like the full surgery, but without the actual treatment. In some studies, placebo back surgeries have had just as much benefit as the standard surgeries, from the power of the ritual and meaning patients get from undergoing what they think was the full surgery. That's the story I'm telling myself about what happened yesterday with my brain surgery. And  meaning and ritual are created socially, so you can do it with me by imagining and feeling the treatment with me. I believe you were all involved in the intervention, and that it involved "spooky action at a distance," as quantum physics talks about, in ways that removed or transformed the cancer more effectively than the laser would've. Maybe you have a particular image or story of how your action, thought, or ongoing change is contribututing to the impact. I'd love your help. You can add your comment to the story.

Journal entry by Michael Bischoff

I found out yesterday that I have a brain tumor that probably needs surgery soon. Let the healing adventures begin! 

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.

Gratefully, Michael
Michael’s Story

Site created on September 25, 2015

I found out on Sept. 24, 2015 that I have a brain tumor. I had surgery the next week, and started radiation and chemo shortly after that. It is an aggressive kind of cancer called Glioblastoma, that requires ongoing treatment. We've created this site to keep friends and family updated. We set up another web page for people who would to give money to help pay the medical bills and also support our work and healing: https://www.gofundme.com/healing-for-michael-and-family (https://www.gofundme.com/healing-for-michael-and-family.   We) . We appreciate your support and words of hope and encouragement during this time when it matters most. Thank you!!

SVG_Icons_Back_To_Top
Top