Journal

Journal entry by Michael Bischoff

Short: I'll probably head home this afternoon with IV antibiotics to do at home for 6 weeks

 

 

Longer: The sample of my spinal fluid they took yesterday also has some of the same staph  infection growing in it as the sample the day before does, confirming the doctors' desire for me to do long-term, serious antibiotics. They're planning to put in a picc line, hopefully today, and probably send me home with instructions on how Jenny and I can manage the IV pump ourselves. This will probably be twice a day for about 6 weeks and send my GI system into some tight tunnels. Now I'm waiting on the picc line to be put in. 

 

I've spent a lot of time waiting  for doctors in the past 24 hours, but I've been feeling good, and I've done many laps of walking around my hospital floor. I even found a stationary bike in a lobby on my loop, so I'me getting some good cross-training. 

doctor/friend, Peter, asked me today how I'm feeling about my mortality and illness. He said he thinks I have a lot of living left to do, and he's still approaching my care optimistically.There are so many reasons that I love him. 

 

Last night, my dad's cousin, Joylene, who I invited to visit in my previous post, did indeed show up. At 2:30 am, a kind nurse, Abby, gently woke ,e me up to start new IV meds and check my vitals. As Abby stood at the end of my bed, it felt like Joylene was next to her, with a playful smirk. Joylene seemed to explain this way of flying that I hadn't done before. It felt like Joylene had this way of being personally present and supportive through multiple nurses at the same time, and that she had chosen this form of creativity and care as one of her contributions.I hope she  returns to instruct me more, Imagining her last night also helped me feel less irritated that I was being woken up at 2:30 am.

Journal entry by Michael Bischoff

Short: still at the hospital, starting antibiotics soon.

Longer: I had about convinced the doctors to let me go home tonight and have me come back as needed, when there was an update on the spinal fluid sample they took today, showing that it contained white blood cells, another possible sign of infection. So they will start IV antibiotics tonight and have me stay the night. Eventually, they'll probably set me up to do IV antibiotics at home, probably dailyfor four weeks. But there is a chance that the original lab results for my spinal fluid weren't from infection in my fluid, but some germs that got on the needle as they were taking the sample. If the lab of my fluid sample today is negative tomorrow, I might be able to hold off on the home IV plan.
 

At this point I feel more daunted by the treatment plans than the infection. I also feel curious about the falling, floating, and falling that might happen while I'm here. This evening, two cousins of my dad's are planning to visit me. They're wonderful at keeping extended family connected, and keeping the memories of family alive after they've died. Maybe they'll bring some ancestors with them for me to fly with tonight. One that I'd love to get to know is another cousin of my dad's, Joylene. When Joylene was 9 she was driving with her parents for her dad to preach at a Maundy Thursday service. They were hit by a drunk driver, and all died. My impression is that Joylene has a lot of life to share.

 

As Mary Oliver said to us lastst week as she died, "I look

upon time as no more than an idea,
and I consider eternity as another possibility,"
I think one of the perks of hospital stays is the increased chance of unusual internal visits.
Come on over, Joylene.
 

Journal entry by Michael Bischoff

Short: My spinal fluid isn't leaking, but there's a staph infection in the fluid. 
 
Longer: Last night I was very careful to have my head propped up high in bed, with the area where the leak had been facing up. It didn't make for restful sleeping, but I was very happy that when I got up in the morning, there wasn't any spinal fluid leaking out. 
 
However, this morning, the hospital called and said the sample of my spinal fluid that they sent to the lab yesterday is showing some infection--which means I need to go back to the hospital this afternoon, to be admitted, and probably be on IV antibiotics for a while. Now my eyes are a little leaky, instead of the side of my head. 
 
I am often comforted by an image my friend, Kyoko wrote about, in the context of her husband dying:
"I thought I had fallen off a cliff. 
When would I crash into a thousand pieces? 
I waited to hit the bottom. 
Falling and falling, I asked when? 
 
Never! There was no bottom to hit. A strange opening came with that realization. I am not falling! I sang out. 
This was not a descent to the lowest earth. Something was defying gravity.
I was floating
Suspended in groundlessness. 
 
At first it was disorienting.
I remembered the time I plunged backwards
into the dark warm sea
at night.
 
Drifting in the imperceptible current
without any sense of direction...
In the groundlessnesss, I wondered how wings grow. 
With wings I might be able to navigate this disorientation. 
 
from Kyoko Katayma's beautiful book of her paintings and writing, Wings above the Sea
 
Not surprisingly, the call about the infection this morning brought me closer to the feeling of groundlessness that Kyoko writes about. I'm grateful for her, and my bird friends, for giving me resources to navigate the disorientation. Jenny is planning to take me to the hospital in about a half hour. 
 
While infection in spinal fluid can sometimes be deadly, some doctors believe it can be helpful in activating the body's immune system in a way that also helps fight  brain cancer.It could be that the similar infection I had three years might be one of the reasons I'm still alive today.  There lots of possibilities in this groundlessness. 

Journal entry by Michael Bischoff

Short: Back home from the hospital, and there's a plausible story that my spinal fluid is in the process of settling down.

Longer: the nurse practitioner from the surgeon's office, Sharon, who has compassionately and skillfully walked me through many hard times, came to my ER room. We were so happy to see her. She took a sample of my spinal fluid, from where it had been building up on my head. On first appearance, it looked clear and uninfected. She also sent it to the lab. While she was doing that, she noticed a stray suture underneath my skin, near the leak. That suture trying to push it's way out might've been one cause of the leak, so she pulled it out. Then she put a new stitch in where the leak was. While those things were going in and out of my head, I did some intense squeezing of Jenny's hands.

They watched me at the hospital for a half hour after that to make sure it didn't start leaking again right away. And now, we're home! 

If the leak starts again, today or later, there's a  a good chance they'll do a lumbar drain, the procedure I had before where they thread a tube up my spine and drain spinal fluid out from my back for days, to lessen the pressure of the fluid in my head. It was pretty uncomfortable, but I had some very interesting visits from MLK and circus monkeys during that time.

Jenny and I have actually had some very nice conversations during this time in the hospital, with her in my little hospital bed.

See you around the next corner, as we look for meaning and purpose there. 

Journal entry by Michael Bischoff

Short: back at the ER with a little spinal fluid leak


Longer:When I woke up this morning, I noticed a little spinal fluid had leaked out of the place where fluid had built up under the skin on my head. After talking with the on call nurse at my surgeon's office, we headed back to the ER. I'm now having some quiet time, as I wait for doctors.

My friend Beth recently reminded me of Victor Frankl's idea of "healing through meaning."  As I interpret his idea, a foundation of healing is cultivating meaning and purpose in three areas:
1. What we are creating and contributing in the world
2. Our relationships
3. Our attitude
This helps focus my energy, even as I'm in the ER. I feel like I can always be listening for what is calling me in each of these areas and take a next step in seeking meaning and purpose in each area--expressing appreciation for nurses at the hospital, taking in how amazing it is to be married to Jenny, noticing where my hopes, fears, and attention are going.

While I think attitude can be a foundation of healing, I don't believe I can make healing happen with my attitude. I see healing as a gift of grace that can't be controlled or predicted, but I do believe Frankl's ideas point to practices that can make a hospitable space for that grace to arrive.

I don't have a headache or other symptoms this morning. I'm waiting for someone from my surgeon's office to come. Thanks to Victor Frankl and Beth for helping focus my mind in the waiting. I'll let you know if I get any important news. It might be days or weeks of waiting to see if the spinal fluid relaxes back into it's regular place, or something entirely different.

Journal entry by Michael Bischoff

Short: Headaches and spinal fluid buildup are both better. I'm still at home.

Longer: When I went to the ER a few days ago with spinal fluid building up under the skin on my head, and a persistent headache I'd had for 24 hours, I packed a bag for an extended say in the hospital. Having been through spinal fluid leaks and infections before, I thought it was almost certain I'd be spending multiple days in the hospital. On the ride to the hospital, I told myself many stories of of spinal taps, drains, and surgeries that would be coming up. I felt resigned and afraid, but a little satisfied with my knowledge.

I'm a big advocate of the healing power of stories, but thinking my story is the whole truth is maybe the biggest impediment of my healing.

I've spent the last few days obsessively asking Jenny to look at my head every few minutes, to see if the pocket of spinal fluid looked different. She's quite a patient partner. Jenny would usually say, "looks about the same--a little bulge, not leaking." Then yesterday morning, to my surprise, Jenny said, "it looks smaller. In fact, I don't see any bulge there at all." I felt ebullient. Then, a few hours later, when I asked her again, she said, "well, it got bigger again. It looks more like it did yesterday." I could feel my belly sink, like I was going down a steep hill, into the valley of scary stories. It kept going up and down a little, or maybe it was just the angle Jenny was looking at it. I also had a small fever yesterday, and I started checking my temperature obsessively too, knowing that a fever could be a sign of meningitis. We called the surgeon's office to see how soon I could get an appointment. The nurse practitioner said they might need to do a surgery to put in a shunt, to drain fluid away from my brain, if the pocket of spinal fluid didn't go away by itself. That gave my brain a whole new set of stories to tell. My dad had at least four shunts put in his brain, to drain excess spinal fluid into his belly. All of them got infected or had other problems. I know my journey and my dad's are connected in many ways, but I was hoping the next stage of that wouldn't be a shunt, but some kind of spiritual travel together.

This morning, I met with the nurse practitioner in my surgeon's office. She said it is normal for the fluid buildup to go up and down in the process of stabilizing. She reminded me of the intimidating name of the condition, pseudomeningocele. She also said it is pretty likely that it will resolve itself, and we should just keep watching it and let her know if it gets much worse. We don't need to let her know of every little rise and fall, though.

I was so glad to be wrong about my story of multiple days in the hospital, and I want to be open to my fearful shunt stories being very wrong too. In the last day, I also haven't had any significant headaches, which is a big change from this past weekend. I think the steroids I'm taking are reducing the swelling in my brain, which was probably causing the headaches. This swelling was most likely from the radiation treatments I finished last week.

I look forward to many more times of being wrong and more chances to appreciate the openness of uncertainty, before creating too many scary stories.

A book by I've found really helpful, How Healing Works (by Wayne Jonas) says that 85% of the source of healing comes outside of medical treatment. The body often heals itself, with the help of community and grace. This week has increased my desire to build a friendlier relationship with uncertainty, and appreciate that natural movement of healing.
Today the nurse practicioner pointed to one part of my MRI from this week and said "that could be tumor, or maybe scar tissue. I'm sure your oncologist will keep an eye on it."  I continue to have many chances to practice relating to uncertainty. 

Journal entry by Michael Bischoff

The MRI I got when I went to the ER didn't show any obvious tumor growth. The pocket of fluid on my head is probably spinal fluid, but they are hopeful it will resolve itself. My head still hurts quite a bit, and the guess is that it is from swelling of my brain from radiation. The steroids I'm taking should eventually help with that. It looks like I'll go home tonight. It is partly up to me, and if I want access to the stronger pain meds at the hospital. I'd love to sleep in my own bed tonight. Although as I just changed back into my clothes, I threw up, so they are watching me a little longer. As we were coming to the hospital, it felt like my emotional tunnel of vision was getting smaller, with waves of fear, imaging the chain of events that might come next. Getting to choose to go home, even with some risks, the tunnel looks a little bigger, with fear and sadness still in there, mixed with relief and hope.
I'm grateful for Karen driving us to the hospital, my kids changing their plans to come to the hospital, Jenny's ever present support, and those of you that joined me in spirit through this latest tunnel. Hold on tight, we have just begun... And, home!

Journal entry by Michael Bischoff

I've had a headache since yesterday evening, and today Jenny noticed a small build up of fluid under the skin by the scar on my head. After talking with my doctor / friend Peter, he told us to go to the ER to check things out.

I'm here at the hospital now, and going to have an MRI soon. It could be a spinal fluid leak, as I've had before. I'm grateful in way for the timing, because at the healing story event I facilitated yesterday, I felt great and had a lot of energy. It's nice my body knew to wait until after that event to ask for attention. I'll update when we know more.

Journal entry by Michael Bischoff

Short: 12 of 15 radiation sessions & 16 of 21 days of chemo completed; so far, I haven’t noticed any side-effects. My blood counts have gone down a little, but not to dangerous levels. After seeing an orthopedic doctor, I’m pretty sure the pain in my leg is muscular, not metastatic cancer.




Longer:


When I was biking to radiation this morning in the warm sunshine, a large hawk flew above me in the same direction for a while, then landed on a tree next to the bike path. As the mask strapped me in place before the radiation started, the hawk carried me above the table. I thought about how having radiation zap and kill some of my brain cells fits into my larger story of how healing works. And how does taking a chemo pill of poison every night fit?




The two years before this fall were remarkably and unexpectedly stable. All the scans of my brain in that time failed to show any cancerous growth. My family and I got into a pretty normal rhythm. I went to lots of track meets and concerts. I invested a lot into building a healing story program locally and nationally. I felt like I could build my relationships and focus on supporting others. I made plans into the future, trusting I’d be there.




This fall when I found out cancer had grown in my brain again, and as I prepared for another brain surgery, I entered another stage, like some previous ones, of releasing and dissolving. Like the other times I found out about cancer growing in my brain, I had to hold all the work I was doing lightly, knowing there was a good chance that I wouldn’t be able to complete what I started. I shifted back to considering what I needed to say in my close relationships, in case I didn’t have much time to say it. There have been profound gifts in these times of dissolving and releasing. Don’t most of us wish for the opportunity to release all our commitments, and only pick back up what is full of life? Don’t we long for something to create the opportunity to say what needs to be said in our closest relationships?




These dissolving times sometimes feel like the ground beneath me disappears, and I’m in a free fall. In my relationship with Jenny, when I’m unsettled, I still always feel the unconditional love that surrounds our relationship. Today on the radiation table, as I looked up at the fake stars on the ceiling, both the poison of chemo and the penetrating rays of radiation appeared to be instruments of grace in the dissolving phases, breaking apart my boundaries to let in more of the unconditional love that is holding me.




Most of us, most of the time, have the privilege to see ourselves as separate, independent individuals. Radiation and chemo can break holes in that illusion of separateness, and knock me onto my knees, in need of the generosity of both skilled care providers, and divine healing that I can’t control or predict. In these dissolving times, I feel urgency to see and honor the ways I exist because of and through others. I see how I can’t live outside of relationship.




After radiation this morning, I spent four hours in the wildlife refuge next to the Minnesota River, reflecting on the rhythm of building and dissolving. At the river, I sat for a long time next two swans, who were in a small area of open water that swans return to each winter. I tried to listen for how they find the open water in ice, and how I can find what is life-giving in times of chemo, radiation, and other dissolving forces.




My oncologist has said he might recommend a more hard core, in patient chemo, after my radiation is done. I have a MRI and appointment with my oncologist on Jan. 29 to talk about next steps. Whatever he recommends, I want to investigate with him and others, what fits with the natural cycle of building and dissolving.




Because I’m not feeling any side effects, this week’s stage feels surprisingly stable and smooth. I want to place my hope not just in this stage of stability lasting longer, but I want to learn to trust and identify with the overall cycle of building and dissolving, moving with them, allowing both to open me up to the larger love that contains them.



Because I’m feeling better now than I expected, it appears likely that I’ll be able to facilitate the healing story event I planned for next Saturday, the 12th, in partnership with some amazing storytellers: https://shakopee.eventbrite.com. You’re invited!   
  • Two of my swan friends at the refuge, taken last winter 
    Two of my swan friends at the refuge, taken last winter

Journal entry by Michael Bischoff

Short: The MRI of my back that I did yesterday didn't find any cancer there.
 

Longer: When I was in the MRI machine yesterday, my family had a picnic of Vietnamese food in the MRI waiting room. After my doctor/friend, Peter, finished his work day, he came to look for us at MRI. He found my family and asked my kids if they had any questions about my health. My son bravely asked, how likely it was that the MRI would find cancer in my back. Peter reassuringly responded, "very unlikely." I think we all slept better last night because of his reassurance We'd all been pretty worried.

When the MRI tech put in my IV, he asked the names and ages of my kids, who he saw with me in the waiting room, and asked if they'd like to see the MRI control room. He said he could make it look like they were setting up my MRI. My kids didn't have time to tour the MRI controls, but if anyone says that health care providers have to be cold and distant, point them to me. I have lots of stories to tell them. 

 

When I was in the loud MRI machine, I was telling myself that the most important thing wasn't whether or not there was cancer growing on my spine. It is more important to me to notice and follow where love and aliveness lead. Peter and the MRI tech both softened my fear with their love and aliveness. 

 

I was still scared, though, this morning, when Jenny and I went to my oncologist's office to find out the MRI results. When he came into the exam room, he quickly told us that the MRI was all good. Then we talked about possible next treatments, after I finish the three weeks of radiation and chemo that I started yesterday. 

 

We won't decide what to do next until the MRI I have after radiation ends, but talking through possibilities now helps me begin preparing for that decision, which I want to make in partnership with the doctors, not just passively receiving the plan. I tried to empathize with my oncologist about dealing with my high expectations for communication and processing. Multiple people in my life have that challenge. I also told my oncologist that i wanted to "respect his professional boundaries, and love him and be loved within those boundaries." He responded that I have the love, but that when we talk about treatment that he needs to be mathematical and strategic. Translating from oncologist language to  my language, I think that might've been a passionate, affectionate declaration.  I told him that his strategic brain is part of what I loved about him, and that math and love can work together. 

 

The radiation I did yesterday and today, and the chemo pill I took last night, have all gone smoothly. No noticeable side effects yet. 

 

My leg still hurts, and we don't know why, and I still have brain cancer, but the world feels much brighter and more spacious today than it did yesterday. 

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