Konrad Noben-Trauth, Ph.D.,J.D.

I am writing this blog for two reasons.  First to share with you my experience  with this type of cancer and second to keep myself active and engaged.

    As to the first reason, I found it beneficial for myself to hear from other patients about their pain, suffering and coping with this disease. It helped me to better understand and accept my own symptoms and difficulties. As  to the second reason, a major struggle with the disease is fatigueness and an excessive daytime sleepiness as result of medication, e.g. Temozolomide or Capra and the tumor itself.   reading and writing gets me out of bed and keeps my brain , or whatever is left thereof, active.  I hope this Blog is helpful to you too. Note, however that the Blog is meant to share experiences opinions and impressions. the Blog is not  intended to give advice.  As you read through the varies entries you will notice that this Blog is not a professional Blog as it does not include an archive or a function to leave a comment or subscription. I plan to update the BLOGevery month or so.   If you feel you want to leave a response you can email me to Konrad Noben-Trauth nobentk@gmail.com. but please keep it short and crisp.


INDEX

September2016

October 2016

January 2017

June 2017

July 2017

August 2017

September 2017

October 2017

November 2017

December 2017

January 2018

February 2018

March 2018

April 2018

May 2018

June 2018


  September 2016

I was diagnosed with a brain tumor on Wednesday September 28, 2016.  There were no overt signs that this would be coming although some episodes prior indicated that something was not right.  On the Friday before, I got lost in the TCF Tower downtown Minneapolis where I used to work and go for lunch.  Same day I had white flashes in my left eye and lost balance while talking with a colleague at the phone.On the Saturday I woke up during the night and was not able to figure out the time. In the morning after shaving I fell into the bathtub not knowing why and how. On the Monday I got hopelessly lost with my car in the Macalester neighborhood in St. Paul. and had an accident; not knowing how it happened.  All hell broke loose on Wednesday morning when I found myself being unable to put my clothes on.  buttoning my shirt, tighting my shoes, getting into my coat: impossible.  I desperately wanted to get to work to sign the paperwork to start working as an associate attorney for the patent law firm Schwegman Lundberg and Woessner P.A.  I managed to get to the bus stop, took the bus downtown and got off at the IDS tower .  but by then I looked totally disheveled and disoriented. The security guards stopped me.  They noticed that something was wrong. I called my wife Nancy and they called the paramedics. They did a few tests on my eyes and arms and brought me to the ER at the Hennepin County medical center (HCMC) in Minneapolis.  A CT-Scan and MRI revealed a 5x3x3 cm tumor on the right temporal  lobe.  The docs said  it looks like a glioblastoma grade IV. I am a molecular geneticist. So I knew what it meant. It felt like a k.o. punch. Two days later I had a craniotomy.  Everything went very fast. The day before surgery I made phone calls to my parents, brother and sister and friends.  It was hard to say I am sick.. I  have brain cancer. I didn’t think much bout the risk of the surgery. Surgery seemed inevitable anyway. There was no alternative. The neurosurgeon removed 90% of the tumor. Histology identified the tumor as a glioblastoma multiforme. Molecular tests showed a non-favorable mutation load; e.g. under-methylation of the MGMT promoter, which makes the chemo less effective.

Fortunately the surgery went very well. I could speak, walk and think; but the tumor had destroyed much of the nerve fibers controlling the left vision field, leaving me with a permanent left vision field cut; I have no left peripheral vision.  My left arm and hand is also impaired with reduced mobility and sensitivity; basically everything left is impaired.

A few days  after surgery I started with extensive rehabilitation: physical therapy, speech pathology training; occupational therapy; talks with psychologists and neuroscientists. I was tested on all sorts of things; every day felt like another IQ testing; evaluating and ranking.  the rehab therapy was intense and exhausting. The HCMC staff was excellent; very competent; patient and compassionate.   Three weeks after surgery and rehabilitation I was released from the hospital.


October 2016

I was discharged from the Hospital on Oct. 20 20I6, and started postsurgical treatment: consisting of six weeks of chemotherapy with Temozolomide and radiation five times per week for six weeks.  I tolerated the chemo quite well; cell counts and metabolites were always normal. The radiation caused mild hair loss and some reddening of the skin. the major struggle was with fatigueness and sleepiness.  During that time I also had a few seizures that affected my left arm. All the mobility and sensitivity that I regained during physical therapy was lost.   It took three weeks to get back to pre-seizure function.    There is also significant memory loss. I used to play guitar for ten years but I lost all of it; studies and technical drills that I practiced daily for years are all lost from my memory.  I am physically and cognitively disabled. My wife Nancy takes care of me 24/7.  God bless her good heart.

the first part of standard care ended on Dec. 23, 2016.    several months later I still get easily disoriented and have difficulties navigating parking lots, stores,restaurants streets and such. I get easily dizzy and shaky. I walk slowly and with care always scanning the left side.   I avoid crowded places for fear of running into something or someone. cognitive wise I can read and write. conversations with more than two people drain me out quickly.  I can read the newspaper and light books, but highly technical literature; egg. scientific papers, patents or court opinions are more difficult to read.  I need help with meals, clinical appointments, medication, navigating health insurance and such. In short without Nancy I could do nothing. No chance I could live alone in an apartment. or being anything close to independent. I can’t drive a car or ride a bike. crossing a street at a stop light scares the hell out of me. My bed is my best friend.

During the chemo radiation stage of the treatment we stayed at the Hope Lodge in Minneapolis. This is a hospice run by the American cancer society and supported by the Schulz family.  The Hope Loge was a live saver. We met wonderful people: fellow cancer patients and staff Thank you Schulz family! and staff! Between the first and second stage of the treatment is a one- month gap. During this time we flew to Germany to visit my parents, and siblings.  It was a rather emotional fare well tour and physically very demanding. With Nancy’s help I could manage it.


January 2017

I began the second treatment step, the maintenance phase in Jan. 2017.  The MRI after the chemo radiation step in Dec. 2016, indicated some pseudo progression; that is some residual tissue or recurrent tumor in the tumor cavity.   The maintenance phase onsisted of six cycles, each cycle comprising five days of chemotherapy followed by 23 days off. we started with a dose of 200mg Temodar (also called temozolomide)per day. 



June 2017

The diagnosis and the surgery changed everything. Nothing is like it was before.  Everything looks , feels and tastes different. Even love feels different. a new reality started; the old is gone , a new normal began and with all that many questions came as well.

waking up after surgery and hearing the diagnosis of glioblastoma multiforme felt like someone pulled the floor out under my feet and everything collapsed upon me. I remembered Job who had to deal with one bad news after the next loosing all of his life. Likewise I feel I lost everything, I had started a new life in Saint Pauland was ready to begin the last part of my life for which the first was made when the tumor struck.  some called it a tragedy, being dealt a bad hand or others had no words to express their feelings.   I m a believer in the Christian God. I have difficulties calling the tumor God’s will. I don’t always know what his will is for me.  I know he loves me and wants what is the best for me. Through the prophet Jeremiah the Lord asserts “I know the plan I have for you. A plan for your welfare and not for your harm, so as to give you a future of hope”. So perhaps there is some purpose and divine meaning in this fate  I was raised in the catholic tradition and during law school I joined the Ignatian associates of the twin cities. I followed the spiritual exercises of Saint Ignatius with a spiritual director and prayed an hour a day.  The exercises and the praying helped me to structure my life and get closer to God again. 


ever since the tumor struck, my prayer intensified and I feel closer and drawn to God.  Over the last months the Lord and the father have become close friends of mine. I can relax, lay back in God’s right hand and know nothing bad can happen. 

It never dawned on me to see my tumor as a beast or enemy that needs to be defeated or fought against. I feel accepting it as it is, yes even embracing it keeps me more at peace with myself than engaging in a raging battle against the cancer.    But there have been times when I argued with God  what was the purpose of letting me get so far and then have the cancer pull the plug.

It raises the general question of the meaning of pain and suffering; Why is a loving God allowing it? No one knows for sure. But for salvation it is not necessary to know.  Remember that Job ends on a positive note. The Lord blessed the latter part of Job’s life more than his former part. The general answer is as Jesus said to reveal God’s glory. I think this answer can only be comprehended in faith. It is not a rational answer. That is because faith is not a philosophical principle but a grace of a loving personal God.




Today is June 18, 2017,I am currently in the last cycle of the maintenance phase and have only three more days of chemo therapy to go; the dose meantime was increased to 400mg per day. Treatment then ends; approximately  nine months after surgery.  The tumor cavity and my brain will be monitored every three months with an MRI. the last MRI on June 2017 showed no evidence of tumor growth or tumor recurrence; the other MRIs also showed always a stable result. 

I hope the tumor stays dormant but I am aware of the statistics.

Because of this, during the maintenance phase we organized our finances and set up an estate plan for us consisting of a will, a medical directive and a power of attorney. we also discussed plans for the funeral. Currently, I live with Nancy and her family on the Noben farm in Lake Park in northern Minnesota.


all in all I tolerated the chemo quite well; I had no major side effects aside from fatigueness and sleepiness.  During the days off chemo, and four days after I spent most time of the day in bed; physical activity was at a low so was any sort of cognitive activity; life under chemo is dismal.  sleeping problems back and forth. I had no appetite but had to eat something. Even the thought of food disgusted me.  everything became a burden.

Today is June 21,2017, I finished with the maintenance phase and  last night I took the last tablet of temozolomide. I am again overcoming the fatiguenes  and sleepiness but feel well   As I said, There is no further treatment planned.  I am happy and content with this. There is no evidence that more TMZ chemo has a beneficial effect that would outweigh the side effects. I let nature run its course and monitor the tumor every 3 month with a MRI scan.  statistic says that tumor recurrence is inevitable and nearly universal; mortality rate isnearly 100%So let us see and be prepared.  There are things in life that I still enjoy.   I speak with my sister Susanne, my brother Franz and my parents Elfriede and Erhard about once a week. You all have been tremendeously supportive; thank you for being there hen I call, listening, when I complain and whine and your love! I am engaged with the Ignatian Associates, a catholic lay group of men and women in the Twin cities dedicated to live a life of simplicity,  apostolic availability and fidelity to the gospel.  I look forward to become a promised member of this group at a ceremony in July 30, 2017, and to share the remainder of my life with the life of these faithful servants. Thank you Christine, Paula for the many coffees a caribou cafe! and Mary, Martha, Tom, Denise chris and damien, Maraiah and the many others space prohibits to mention all; thank you for your prayers, soup, desserts,  and love!  thank you most of all Nancy, my beloved wife of 24 years! Thank you for your love and steadfast faithfulness  at all turns in our life until death depart us.You all are part of that human and spiritual f abric that provides my current life with meaning and purpose and helps me to get through the day.  I am sure we will see each other again in heaven and  continue our journey in the next life.

Emotionally life is a roller coaster.  We are approaching the fourth of July 2017.  People are having parties, fun and grill a lot.  I have never been a party person but I am happy for all of them .

What hurts most in those days is not so much of not being able to have a beer but rather not having a future any more.  I am envy and jealous of my former colleagues and friends at law school and others I have met for they have a bright future, with so many opportunities and so much good work that can be done  ahead of them.


July 2017

It is July 6, 2017. It is going to be very hot today, but I am always cold. I wear a thick jacket, wear a scarf and wool hat. It is one of those days where it takes me a long time to wake up and for the cloud to lift.  I still take medication that causes sleepiness: capra and gabapentin; the former helps against seizures ; the gabapentin  helps with the nerve pain in my left arm; the nerve pain is a consequence of the tumor and the resection.  The pain is also treated by occupational therapy specifically through myofascial release therapy.  However, both capra and gabapentin add to the fatigueness and dizziness. I am thinking that the residual tumor adds its share to that too. tumor cells are still being active in the brain, being under attack by the immune system and secreting factors and substances affecting normal brain function.   since the end of the chemo my sleep has become much better. I am more rested in the morning and the sleep intervals seem to be longer.  Yet I still need a lot of rest during the day. I am also very much in need of silence and solitude.  It keeps me at peace with everything .

When I feel ready I read stories of the old testament.  There is always a new insight and fact that I can learn either about the actor or about the Lord.  I am mostly intrigued and moved by Moses and Abraham.  Their interactions with the Lord reveals a lot about this merciful, compassionate and forgiving.  God. See how Abraham negotiates and pleads with God about the destruction of Sodom. Isn’t that nice?  Or Moses telling God, I can’t speak Dude!, you got the wrong man here. I was always puzzled by the old testament stories  but reading the books in context with each other for example Isaiah and the gospels, it all comes together and makes sense. You can’t make this up. 



The biggest challenge during the last four weeks has been the persistent pain in my left upper arm.  The  motion range is fairly limited and I can’t hardly even pick up a book without having pain; but I can use  a fork and can type on a keyboard to some degree. But holding or pulling myself up with the left hand on a handle is impossible.  I learned to avoid certain movements and move the arm mostly slowly and with care.  I take 600mg gabapentin every evening and on demand, when the stinging pain becomes unbearable I take a morphin tablet. That combination gets me through the night and through most of the following day  with pain levels plus minus two. Stretching and shaking the arm so as to emptying it also brings some relief.   There is also a constant burning sensation in my left hand and fingers that recently started to beg my attention. Neuropathies I learn are a common consequence of brain tumors.

For the most part I avoid the noise of the world. I abstain from watching the news and keep web browsing  at a minimum. I feel time has become too limited and precious as to be wasted. I feel meditating and praying is more beneficial  and live-giving.  


The quality of life has become much better after the temodar chemo ended. I can sleep during the night and feel rested in the morning.  Regarding appetite I settled on a few dishes such as sushi and shrimp pasta. For breakfast I take waffles and fried eggs.  I weigh 159 pounds and have a normal body mass index.

Another major challenge has been and still is finding meaning and purpose in the daily activities.  I always had far reaching plans. Now I bake smaller rolls.  I help Nancy with her chores and stay engaged with managing my affairs (appointments, medication, health insurance claims.  I did some research on going full time working again.  But for the most part I feel called to pray and to meditate following Paul’s advice : pray without ceasing always giving thanks because this is what God wants you to do.  The mystic Ignatius of Loyola teaches God has created us out of love and wants to share life with us. We are to respond to God’s love by our praise, honor and service of the God of our Life.  All other things are created to help us to achieve that goal. He says we should use them with a healthy dose of indifference and detachment.  I was exposed to his principle early on in my life and it served me well throughout. It gave me a frame of reference and principle of life. Holding yourself in  balance is key.  So now, I should not fix my desire on  health or sickness, but only on what is most conducive to the end for which I am created, namely God’s deepening love in me. Thank you to my Jesuit friends, HerbertJP, Jim,Warren, Joe  and Mark; thank you for teaching me Jesus!


Today is  Sunday July 23,2017. a dreary day. I didn’t sleep well; the pain in my arm and tingling in my hand kept me awake. I have to take some naps during the day to get back to normal function.  I catch myself making plans again. I’d like to work again. I Spent the afternoon resting and strolling around the farm for an hour.  It is safe grounds. There is only one street I should not get lost on just one road.  Later I listened to some speeches of Greg Boyle SJ, the founder of Homeboys industry, a gang member rehabilitation program. Listening to him always fills me with life, awe, peace and hope.  So too today. I calmed down and was at peace with everything and everybody.


August 2017

Today is Thursday August 10, 2017. The last visit with the docs in early July was uneventful. Just the usual checkup: look at my nose and follow my fingers. Everything was normal but the nose looked funny.   The last two weeks I had visit from germany.by my sister Susanne and her son Philip.  I enjoyed their stay very much! I am totally drained now but their visit felt very good . We cooked, baked, grilled, fished and bonded together. On July 30, 2017, I made the first promises with the Ignatian Associates of the Twin Cities. A major milestone on my faith journey. I participated at the ceremony via facetime. I promised simplicity of life, apostolic availability and fidelity to the gospel and to my associates and Jesuit companions. I look forward to live out the promises and take the associated challenges in trust and one at a time. Today It is rainy, windy and cold outside. Something is wrong with this summer.

My next visit with the Docs and MRI is in September 6, 2017.  Currently I am planning the visit and mtgs. with IA members. 


September 2017

today is Sunday September 10, 2017.  I am at the lake cabin near

Detroit lakes.

I just returned yesterday from  Minneapolis meeting the

docs and my IA companions.  The bonding with my companions was inspiring, consoling and encouraging. I felt home and at peace. understood and loved.  The memories will help me get through the next weeks until the next visit in October.  The good news is that all the tests checked out ok. Some cell counts were at the lower end of the spectrum apparently still the effect of the Temodar chemo. The MRI scan also again revealed a stable tumor: no recurrence, no regrowth. the tumor is still there and some tissue is hanging around in the tumor cavity. I am very happy. I am off the hook for another three months: free again to pursue more interesting things than laying around, which brings up a contentious issue with spouse. During our discussion with the oncologist I said that I would like to go back to work. That did not go well with the doc and social worker who want me to stay at home, spent time with spouse and loved ones and live the day.  I was thinking of starting off with some supervised legal work as a volunteer at a charity and try to get admission to the Minnesota bar. I took the bar exam in July 2016 but missed the passing score by 10 out of 400 points having 250 instead of the required 260 points.   I checked with the oncologist as to whether I prepared for the Bar and took the exam with the tumor. No doubt I took the exam with a mandarin size tumor in my brain right over my right ear and an inch wide ring of swelled neurons around it.That is the tumor pressing against the neurons. Small wonder that I missed 10 of those multiple choice questions after nearly 200 questions and 4 hours of testing. I am not thinking of taking the test again but instead try to get a waiver. That’s where the oncologist got off the track. Anyhow I am determined to spent quality time to be productive in helping others. What was the purpose of radiation and chemo if not for getting better and resuming a normal life?

We also tested my left vision field again and that too came out as last time: No worsening. That is good. No improvement either. but that is not expected given the huge size of the tumor cavity. those nerve fibers are irretrievably lost. We also did some more diagnostic on the arm. the orthopedist recommended a EMG. and pool therapy. That is fine with me. 

On our way back I went shopping at my favorite department store and bought a sweater for the fall.   For the visit with the Docs and my friends I dressed up. Another step towards normality.

Today is Tuesday Sept. 12, 2017.  It is back to reality again. after a few days of feeling good and strong. a strange stomach pain knocked me out all day yesterday. I could not do anything, felt miserable , totally weak and tired. Hence I spent most of the day in bed despite good intentions to be productive. Anyway I took this s a sign that my medical team may not be so far off when they recommended to lay low and give heed to the healing, spouse, and rest. Doc said I have nothing left to proof. ok. So I emailed the charity and withdrew from my volunteer request. I slept well and feel content with this. I can’t force things. My health situation is just unpredictable. No day is like the day before.  I got up at 4am and enjoyed a long quiet morning with a big cup of coffee and an hour long sitting on the porch watching the sun rise. 

Today is Friday Sept. 22, 2017.  Last week the HCMC called to schedule an MRI on the left shoulder. We had that done on Sept. 19.  It turns out that the pain in the arm is due to damage to the tendon at the shoulder and some degeneration of the cartilage. Good news is that it can be treated with physical therapy.  The damage was caused by the steroids and chemo drugs. The armpain hasn’t gotten any better. My day passes low key. I get up early in the morning around 4am do some meditation and reading over a big cup of coffee.  at around 10am I take a nap and have lunch at around noon. Then I go to therapy or do my arm exercises

Today is  Thursday Sept. 28, 2017. It is one year ago that I was diagnosed. What a rough year it was and still no end in sight.  True to Ignatius’ advice I exercise indifference preferring a shorter life not over a longer  and vice versa. Despite all there is now settling in a sense of peace and acceptance.  At the end of the day I enjoy my current life. I can spent most of the day praying and reading. 


October 2017

Today is Oct. 5, 2017Nancy’s birthday God bless her dear heart. It's a typical fall day: cloudy, rainy and a cool breeze.  I am off to physical therapy.  The stretching and massaging is painful but it helps at least for the rest of the day.  I am doing my exercises and take the pills.

Just finished reading an article by Bob Umhoefer about dying and life. I found it interesting how we all find our ways albeit different to cope with the inevitable. As strange as it may sound I look forward to it. I am curious about it  I like to think of dying as going home, or going to heaven.  Finally meeting the Lord face to face in his dwelling place. As Christian who beliefs that God works in my life making things happen I often asked myself and others what do you pray for? What is the right prayer and petition? Everything. God has a big heart. it is bigger than we think. Most often I pray for a peaceful and end in the foreseeable future .  I pray for healing of my arm. Interestingly I never asked God to be cured.  Perhaps my faith in this type of miracle is not strong enough. I am content with being in the middle of the distribution.  I have seen most of life and I am ready to let it go. If God has other plans  I am ready for those too.  I am happy with the life I lived and I am thankful for it. I hope the Lord is happy with it too. At least I tried.  I made most of the decisions. Now it is God’s turn.

Today is Oct. 18. 2017, Last week I was in Mpls for an EMG. The test checked out normal. Both nerves and muscles along the arm and hand returned normal results. That is good news. I continue with the physical therapy.  Injection of steroids would be an alternative but for now I try the physical exercises. There is some relief of the pain but not completely. After the exercises the pain usually ceases for a few hours and then flares up again  around the muscle or at the shoulder cup.   I am still at the Lake cabin. Fall is in full swing still lots of sun, wind, and cold at night. I look forward to move back to the farm house.  I still sleep only a few hours during the night and get up around 3 in the morning.  I do my spiritual exercises, have some coffee, take breakfast at around 7 and nap before lunch.  Twice a weak I go for PT and in the afternoon I do my physical exercises.  Today I made a pumpkin nut cake.  My left arm worked quite well. Patience. and cleverness was more on order than range or strength.  The bread came out quite well.


Today is Sunday  Oct 29.  Last week I was completely knocked down by a strange stomach flue and cramps. I spent four days in bed sleeping unable to do any decent work. I am feeling better now and can eat normally. Last week the physical therapist did a midterm assessment. All measurements came out significantly better. She said I made a whole lot of progress. My arm also feels better: less pain, stronger, wider  range. I have two more sessions next week an then I am finished. I do the exercises at home. If I practice I have less pain. That is a good incentive. I also dropped the morphine from the docket.

last Tuesday we had the first major snowstorm of the season. Not much snow but the wind blew very strongly. I sat inside and enjoyed watching the wind moving the waves on the lake.  I also started work on our IA fall newsletter.  That gives me something to do. I finished reading the autobiography of Saint Therese of Lisieux.   The book gives an authentic view into her young and short life.  She suffered and died of tuberculosis at age 25. Thus her spirituality centers much around pain and suffering.  Some of it resonates with Ignatius’ third degree of humility but by and large I feel more drawn to Ignatius’ way especially as laid out in the principle and foundation . I wished I could do more.

November 2017

Today is Nov. 3, 2017. Two days ago I had my last physical therapy session. I plan on doing the exercises at home and go to the gym for walking and biking.  Yesterday I spent 15 minutes on the treadmill and 15 minutes on the stationary bike.  afterwards I went to the grocery store. That was scary because people walked very fast and cut me off plus even n winter they run the air condition. They have seen me the last time.  I still need a lot of rest and quiet time. I sleep a lot during the day. I can work cognitively  only about 10-15 minutes. then I drain out and get headaches. the illness is a school in patience and humility. The psalmist teaches be strong and wait for the Lord.

Today is Saturday Nov. 11. 2017, veterans day. I keep my exercise routine. Yesterday I walked for 30 minutes and did some weights. My arm feels good and is mostly without pain. I open and close doors with my left hand and also use the vacuum cleaner. I sleep well and get up around 2 or 3 am. I feel good just the usual headaches. I still take the gabapentin just in case and until I speak with the doc in December. the next MRI is on Dec. 13.  I am still at the lake cabin. The lake is frozen and covered with snow. I enjoy sitting in the living room and gazing over the lake and the blue sky. yesterday I walked for 30 minutes on the track and did some weights.  the physical exercise feels very good.  Last night I had a little episode what could have been a small seizure. walking back to my bed at midnight I heard a binging sound in my brain, my head started spinning. I lost balance and rambled against the nightstand then falling on my knees. nothing broken just a bruise on my  left thigh. my brain is still fuzzy and foggy. it is hurting too. the headaches are on the right side and the damage on the body is on the left . It almost feels like the tumor is awakening or working again. the symptoms are those when it all started. I don’t know what  triggered the seizure but looking down makes me dizzy. we’ll see how I can maintain my exercise routine.  I scratch the pool visit but  try to do the walking. Today I stayed inside mostly on the couch  or in the chair. I am sensitive to light  and have the hood pulled all the way over my eyes. the light gives me headaches

December 2017

Today is Friday Dec. 1. 2017, I keep up with my physical exercises go to the gym about three times a week walk around 30 to 40 minutes and pull on some weights. still dizzy and headaches everything else the same.I rest and sleep a lot. do some light reading, meditation, listen to music.  Now is Saturday Dec. 15, 2017. I just returned from my last visit to the cancer center in Minneapolis. The last scan checked out nicely. there was no new enhancement and the images came out as last time.  The oncologist liked the result but also warned that there is still a 90% chance of recurrence within one year  after finishing treatment. I am currently six month thereafter. That means we keep monitoring the tumor on a three-month rolling basis for the next year at least.  I thought this was good news and look forward to a peaceful and joyful Christmas season. On this visit I also met with a number of  friends for talking and soul massaging.  We stayed as usual at the Hope Lodge in Minneapolis.  There too we met old friends others we didn’t.  I always feel a certain level of charm and humanity. we all go through the same struggles and display a certain kindness. to each other.

I am still in the mode of still and quiet acceptance: letting go and letting be.  There is nothing I want to hold on to nothing that I desire except the warming love of the Lord.


Today is Saturday Dec. 29, 2017 I had a quiet and prayerful Christmas. I get up early in the morning usually before dawn around 3 or 4 am. That’s when I watch the dawn and hang out with the Lord over a cup of coffee or two. It is the best time of the day and the hope and love I feel carries me through the day and everything else.  I very much enjoyed listening to Bach’s Christmas oratorio and cantatas.  I also tuned in to a lecture on contracts law. I also do mindfulness breathing exercises once a day that too helps me to stay sane and keep anxiety attacks in check.   Likewise the physical exercise is great. I am now up to 50minutes walking.  The neuropathy in the arm is  under control but the headaches throughout the day and night persist. they respond to Tylenol.

January 2018

Today is Sunday Jan. 8, 2018. The new year started  very cold  up to 30 degrees F below  zero.  I stay warm and inside; play checkers with Nancy and enjoy music  as well as the silence in the morning.  My goal for the new year is to get closer to the Lord, to get to know jesus and the power of his resurrection.

Now it is Friday Jan. 19, 2018. It is still very cold outside but I manage to go to the gym two to three times a week. I walk around 40 too 50 minutes on the track and work the machines with the arms and legs. I have no pain in the arm or anywhere else except the brain. I also feel the exercise improving my overall well being. I get up between 3 and 5 every morning before dawn , enjoying the sun rise and the silence, being still and patient.


February 2018

Today is Monday February 19, 2018. My dad passed away  last Sunday at age 87. I was sad that I could not attend his funeral. I very much would have liked to be together with my family: mom and sister. Instead I stayed here and got up at the time of the funeral to be with them in mind and spirit.


March 2018

Today is Sunday March 11, 2018.  Last Tuesday I had another brainscan.  I read the results at the hope lodge at 4am in the morning because I could not sleep. What I read was not amusing. “A New focus of nodular enhancement measuring 0.6 x 0.5 x 1.4 cm in size is seen along the lateral aspect of the resection cavity in the posterior right temporal lobe. This could represent recurrent tumor or post-radiation related changes. Recommend follow-up evaluation with contrast enhanced MRI brain in 6 weeks. Further evaluation with MR spectroscopy and MR perfusion imaging may be considered if there is interval increase in the focus of enhancement on follow up imaging. The oncologist made a referral to the neurosurgeon.

Today is Friday March 16, 2018.  I had the meting with the neurosurgeon who operated on me on the first tumor.  In discussing the MRI and the pertinent literature we came to the understanding that the new focus very likely presents new tumor growth: the timeline ( nine months after finishing treatment; fifteen months after end of radiation; the location of the new focus ( 2 to three centimeter within the tumorcavity all together is indicative of recurrence rather than radiation necrosis.  The neurosurgeon is confident that she can remove most of the new growth.  risk of worsening my clinical symptoms is low; but there is a risk of infection of the brain due to radiation on the skull.  Without surgery the tumor will continue to grow and sooner or later cause clinical symptoms . With surgery the headaches likely persist.  chances that another recurrence occurs remain the same. So I now have to decide what to do.


April 2018

Today is Tuesday April 10. After talking with my immediate family  I decided against surgery.  I felt the therapeutic benefit was outweighed by the risk. I feel content with that choice and relieved.  I continue with my regular routine,monitor the headaches and keep track of the Tylenol . Sooner or later the earthly end will come and I’d rather die with my brain function reasonably intact. As long as I can pray, talk with Jesus  and be in god’s presence I’ll be fine. 


May 2018

Today is Wednesday May 19. 2018. A few weeks ago I had a severe neuropathic attack in my left hand. I experienced a very painful burning sensation in my left hand starting from the palm and spreading into the fingers; it felt as if the entire hand is in flames and burning; I felt little explosions in the fingers; at the same time my upper arm was constantly cramping. this whole episode lasted about 30 seconds and was extremely painful. I had another of these attacks on May 6 and 9.  Also over the past four to five weeks the headaches increased in severity and frequency.  the headaches occur at all places and tare most intense in the morning. I spoke with my oncologist at HCMC and we scheduled another MRI for May 20.

the MRI revealed a dramatic worsening and rapidly growing tumor surrounded by an edema. we scheduled surgery . I had several more focal seizures and excrutiating pain.

June 2018

I was operated on Friday June 1; everything went well. I am thankful to the excellent care of the neurosurgery team at HCMC in Minneapolis.  and nancy my faithful wife who looks after me with care and love.

the seizures are gone, the headaches remain; I look forward to a reasonably pain-free summer.

today is June 10; I was released from the hospital last Tuesday and now am back home.


Unfortunately the headaches got worse and the focal seizures came back again on Friday June 15. We rushed to the emergency room in Detroit Lakes hospital to perform a series of CT scans,  the images were sent to the neurosurgery team at HCMC. the neurosurgeons asked us to drive down the same evening for shunt surgery the next morning.  there was significant fluid build up in the lateral ventricles that needed to be drained. we arrived at the ER  and ICU at HCMC at around 10pm this Friday June 15.  the shunt surgery was performed on Saturday June 16  at 7:30am.   the surgery lastet three hours. I stayed in the hospital until Tuesday June 19.  then I was discharged and we spent a week at the hope Lodge in Minneapolis to rest heal and recover.

Today is Wednesday June 27. We arrived yesterday at home  at last.


Hopefully the tumor gives me a short break to rest and sleep.  headaches and pain in the abdomen are endurable.

July 2018

today is Monday July 2 2018.   so far I am still doing reasonably well. I enjoy good company and care of my wife.  the weather is fair and I love to eat schokolade. I get around with my cane and rest a lot.