Journal

Journal entry by Michael Bischoff





had a stealth MRI yesterday, where they placed little magnetic, sticky circles on different parts of my skull, to be reference points for the surgery. Of my 30ish MRIs, this was probably my favorite one, in terms of my internal experience during it. My friend, Tanya, has suggested that the drumming of the machine can be a signal of entering into a ritual mind-set. This is when that sunk in the most for me. 
During the MRI, I had an internal conversation with MLK about his desire to visit and work with my son, and saw Jenny's mother and grandmother loving on her. Clearer than I've seen before, I could see a place, or way of being, where everything was one--and in another direction, I saw the land of apparent separateness where we normally live. In between there were many layers, and plenty of fluidity between the oneness and separateness. There was space and ability to play and create in those layers in between. The line between life and after life felt thin and malleable. I also felt ease with the timing, with less rush to get everything done now, reassured that in those layers between life and after life, there is space to keep creating and relating. 

 

I don't think I'm going to die soon, but in the MRI, I felt more prepared for and at peace with dying than I have before. I felt at peace with the life I've lived so far, both in terms of my satisfaction, andmy contribution. 

 

When I finished the MRI, I was a little excited about the surgery, to see what awaited me there. I want to visit more people and places in that in-between landscape. To repeat, I don't feel any premonitions about imminent death, and I think it is pretty likely that after part of my brain has been burnt in surgery, it will still contain some fun and useful abilities. I'm in the preopp room now. See you after the next round of adventures.



 





 

Journal entry by Michael Bischoff

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. 

Journal entry by Michael Bischoff

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.

  • 2018
    2018
  • Feeding baby May 2019
    Feeding baby May 2019

Journal entry by Michael Bischoff

 

 

 

Aliveness springs from our making something of what we experience and receiving what experience makes of us. --Ann Belford Ulanov

 

My friend, Elizabeth, uses this quote to describe her work with spiritual memioir, but it also points to what I seek to do with stories of illness and healing, for myself and others. It has been harder to do this today than earlier this week when I was reflecting  on ectasy and egrets, but I still believe in the principle.

Last night I woke up at midnight with a strong headache and nausea. I tried the rest of the night to go back to sleep and let Jenny sleep, but the combination of pain and worry kept me awake most of the night. Eventually I asked Jenny to call my oncologist, who told us to go to the ER. After some vomiting and a scan at the hospital, it seems likely the pain is from swelling in my brain, which steroids can probably help. They're planning to keep me for observation for the night. As different nurses and doctors asked me the same questions over and over today, as I was feeling exhausted, I was wondering what these experiences were making of me, and what I was making of them.  I was mostly wanting to get away from the experience, not learn from it. I've asked both my nurse and doctor if I could have as much uninterrupted sleep as possible tonight, and they both seem sympathetic to that. If I get a decent amount of sleep tonight, that will be some aliveness and meaning that  I will enthusiastically celebrate.

 

Journal entry by Michael Bischoff

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. 

  • My egret friend, at Bass Ponds, Minnesota Valley wildlife Refuge
    My egret friend, at Bass Ponds, Minnesota Valley wildlife Refuge

Journal entry by Michael Bischoff

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.


 
  • From my last MRI: area used for language in red, tumor touching it on the left, in light gray
    From my last MRI: area used for language in red, tumor touching ...

Journal entry by Michael Bischoff

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.


 
  • Hiking today at one of our favorite places, Afton State Park
    Hiking today at one of our favorite places, Afton State Park

Journal entry by Michael Bischoff

My MRI today showed a new area of growth, that is almost certainly cancerous, on the left side of my brain. All the growth so far had been on the right side of my brain. It appears that the cancer crossed over the corpus callosum into the left side of my brain, next to an area that is important for both understanding and expressing language. My oncologist was concerned that there were cancer cells in between the old and new areas of growth, that also needed to be treated.

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.

Journal entry by Michael Bischoff

Short: I have a MRI tomorrow,haven’t noticed side-effects from chemo yet



Longer:


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.


 
  • No pelicans, but a lovely creek
    No pelicans, but a lovely creek

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!!

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