Journal

Journal entry by Michael Bischoff

I've been doing IV antibiotics at home for about two and a half weeks now, to treat the infection in my spinal fluid. Yesterday I got a phone message from the hospital saying that I needed to increase the frequency of those IV meds from twice a day to three times a day. Hearing that felt like a ball dropping in my belly. Each time I do the meds, it takes 90 minutes, and requires a careful process to start and finish the meds through my PICC line. Doing that three times a day felt like a big threat to my sleep, and ability to do things out in the world. I met today with the infectious disease doctor who oversees these meds. I came to the appointment ready to push and advocate for a way to keep the frequency to two times a day.
I started by asking lots of questions about what the problem was, and what the options were. I said I wanted to protect my sleep and quality of life. At first, he said that, in order to get enough of the antibiotics in my system to do any good, I would need to do the IV at least 3 times a day, and maybe 4. After some rounds of questions, and me feeling concerned I was being a difficult, nagging patient, my doctor thought through more of the options and concluded that the med option that was least likely to be effective was continuing the IV med that I am currently on. To my surprise, he had the nurse take out my PICC line a few minutes later, and he gave me a prescription for antibiotic pills to take, instead of the IV. He explained that there is a chance the infection will come back. If it does, it will probably be accompanied by fevers and headaches. There is that chance with any of the treatment options. But I was delighted with the freedom of being able to move my arm easily, and not being tied down with the IV process. Unexpected freedom!

A couple months ago, I made plans with my son for the two of us to leave tomorrow for a trip to New York, for him to look at colleges there. I've been looking forward to this time with him so much. But, two weeks ago, as I was dealing with the IV meds, and constantly checking for spinal fluid leaking our of my head, we decided that we would change the plans and have Jenny go with Isaiah to NYC instead of me.

Now that I'm free from the IV, I feel sad to be missing out on that time with Isaiah, but still clear that it is better for Jenny to go instead of me.

For Christmas, Isaiah gave me an essay that he wrote about what it is like to have a dad with brain cancer. In his conclusion, he says, "I get sad, and angry, and I think that’s okay. I think two things my dad has taught me are, how to truly feel things and how to take life as an adventure. I’d like to keep finding new joy and meaning with him and feel the lows of cancer too."

Following isaiah's lead, this week I'll be feeling the sadness of missing out on the New York trip, and also feeling from a distance the the joy of Isaiah soaring as he explores possibilities in the big city. I'll also be enjoying the freedom of easy arm movement as I stay home and try not be too eager about helping Grace with her history day documentary. The ways my kids both accompany and release me into the lows and soaring of life with cancer keep showing me how I want to both release and accompany them on their adventures.

Journal entry by Michael Bischoff

Short: In the 4 days since I’ve been home from the hospital, I haven’t had any headaches, fevers, or leaking spinal fluid. So far, doing the home IVs is easier than we expected.


Longer: When I wake up each morning, I still anxiously check to see if any spinal fluid leaked out in the night, fearing the possibility of many days in the hospital with a tube threaded up my spine, to drain excess fluid.


I was scheduled to have a regular MRI and appointment with my oncologist today, but that got delayed until mid-March, when I’m scheduled to be done with my antibiotics. My oncologist said he wouldn’t want to start my next treatment until after the antibiotics. Because of that and because my unplanned MRI last week in the ER didn’t show any obvious tumor growth, he thought it was better to wait on our evaluation of what the next treatment should be. I was OK with the delay because there isn’t a next treatment that feels clear and good to me yet. Maybe the extra time will allow that next step to become apparent. I’m still waiting on some genetic testing of my tumor from the Mayo Clinic, and new experimental treatments seem to pop up frequently.


I haven’t been brave and foolish enough to walk to the river today. The windchill is currently 40 below, but I’ve gotten in a few other times at the river since the hospital. Each time, of course, the surface of the river was mostly ice and snow. Though I couldn’t see it, I was especially appreciative of the hidden, constant current flowing underneath the ice.


Sometimes in the recent flurry of infection, fluid leaking, and cancer ups and downs, I lose track of the joy and abundant life that comes with the invisible current that constantly flows underneath the drama. I’m grateful for the river reminding me of faith in the invisible, constant current, and how I can see my identity at least as much in the hidden current as I do in the formations on the surface, mesmerizing as they can be. I think the surface of my internal river is crowded with my efforts to build and protect an individual sense of self -- of how I’m distinct and valuable. My health ups and downs also serve the purpose of helping melt and soften those images of myself that I build and protect, sometimes helping me sink into and trust the larger river I’m a part of. The melting isn’t comfortable, but sometimes liberating. On days of ease, like today, I want to focus on that invisible current, so I can recognize it on the unsettling days.

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

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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